Fleas and Lice

My goodness. I just cannot believe how long this took to hear anything.

Biopsy was 2 weeks ago. Total disaster. I was in LOTS of pain and awful nausea. Scheduling nurse and I had talked 3 different times about taking my MJ vapors, so I wouldn’t vomit. She said she would make a note of it. Next time, when I brought it up because I remembered the ‘circus’ when having a CT scan.

Once there, however and barely registered, I was taken to the Financial Office to ‘see if they can help me.’ Well, NOT on that day! Just before a procedure.

Again, this ‘nurse’ came up to me as I was waiting on the Gurney to admonish me about ‘smoking’. GOSH! NOT again. I just moaned, cried and rocked with pain. I ‘think’ they finally gave me something for nausea. Speaking of nausea: This last bout of ‘bowel problems’ has been responsible for me losing 35 lbs in 5 weeks. This had me so very worried and concerned. I finally put the symptoms in search engine and there was a NEW word. (New for me.) ‘CACHEXIA’. This is the terrible ‘wasting disease’ caused by cancer. Cancer cells feed and suck the protein out of the healthy cells. NO MATTER HOW MUCH YOU WOULD EAT, even if you could, it would not matter. You starve to death. Being so passionate about food and a decent cook, I thought this would be the most cruel end. Many a night I cried with terror of this death and no one told me different. This was an older dated research and I’ve not had time to find more. BUT, other than some Opiates which they say may or may not be effective, what I did see was that this ONE medication for this ‘condition’ has shown good promises: “CANNABIS”. At that time (2006) it was only legal in Europe. Well, was I happy to see that. I’m already on my way. Then, after a break through 2 weeks ago, when I finally had some peace and less pain with bowels. Three days ago, I strted eating ‘NORMAL’ (organic) food. Just small plate but ‘plate’ never the less. My weight had spiraled down to 155 lbs. I’ve gained 5lbs since. I cannot convey the PURE JOY of feeling ‘Hunger’. I’ve also learned, that I have to have 3 different forms of MJ.

First: ‘Tears of Phoenix’ cannabis oil for cancer. One grain of rice-size about 5 times a day. Ingested with applesauce, 1 mini, tiny piece of ‘European butter’ (fat content is higher.) I found the perfect way to get it down without ‘gagging’. I cut off a slice of lemon, suck on it, throw down the ‘cannabis’ and suck on lemon again. THAT way, no taste of MJ.

I’ve also learned, that when you are so very sick, you cannot eat from a plate or ‘chunky food.’ I was still drinking this powerful bone-meat-veggie-broth. In the middle of the painful night, to soothe my poor abdomen, I would get my beanie bag heated and then 1/2 cup of thus HOT broth.

When Cameron was here and we sat down to eat and I couldn’t, he looked at me with such naked fear and tears brimming, that it broke my heart that I can’t do better. But then, if it had been this disease, nothing matters.  I took a photo of my ‘first food’ and posted it on FB. 🙂

Meanwhile, I have also had an appointmenbt with my ‘regular’ doc whom I beseeched to help me get better with the ‘other stuff’. Also asked him, if he would ‘monitor’ me and note changes and improvements.

I guess, we are still doing the CA 125 even though the Diagnosis is in question. When I learned, that even though the Liver has lesions, it is not cancerous. Once I had shared this, I received many ‘congratulatory’ mails and phone calls.

This does NOT mean, I don’t have cancer anymore but only that not now, on the liver. Everythinbg else was still there, last CT scan. The one with the MOST worrying feature, is the tumor on the aorta. No help for that. This is why the Cannabis has to work because THAT could be my death sentence.

I had asked a friend from the medical field to look at a few things. He graciously did so. Since I don’t have a ‘workable’ diagnosis, I asked what it could be? He answered:’ Lice and Fleas!’

WHAT!?  “Some people have a definite cancer (lice) and some people have a definite cancer ( fleas) and some people have LICE AND FLEAS!”  Best medical explanation I ever had. Thanks.

Had to get another batch of cannabis. This one seems to be much improved and so am I. When you consider, that ALL I am taking for the remaining bowel problem, is ONLY 1/2 of an Ibuprofen and ‘maybe’ 1/4 of a Tramadol, then be assured that’s my entire PHARMA. Less and less pharma pills.

Still envisioning going to Germany and Austria. I guess I will know more after next week’s test.

At the hospitas, later, I vomited all over the place. Horrible experience. I made some decisions. I will have all my tests done here, at home. That will reduce the ‘Misery time’ of about 3-4 hours or more. I live only a few blocks from our Hospital. (They are NOT as rude, either.)

I am supposed to have another Biopsy. (Will call my surgeon and ask if he does this as well.) Not sure if I shoud have before or After the trip. (I will interject that if the ONLY option they will offer me is chemo, I probably won’t take it. My bowels and blood clots would not withstand a new toxic assault.

The other day, I felt soo good, I put some ‘Strauss’ on and  I cleaned my fridge, kitchen, changed guestroom, made Pear Strudel, cleaned my bathroom and THEN….. then I danced a waltz. Alone in my kitchen, the pale sun shinig in and tears running down my face for the JOY of just doing this simple, little thing.

“Chemo never felt this good.’  Cannabis can do a lot but it cannot sew. Healing (sewing) damage. Researching new concepts and treatments.

Lost a few ‘friends’. One, because I take Marijuana. (Gateway to Hell) hahaha. The other one, because I won’t play the Political-Hate game. I JUST do NOT care right now. I am trying to save my life and ignorant opinions do not interest me.

Sure wish I could see my grandkids. It’s been over 2 years with Kaleb and 3 years for Brianna. (Dylan is working, still and busy in the high country.)

 

Camino Not Chemo

This took much longer to do than anticipated. Every turn and test was either lost or Doctor was out of town and left us hanging without results.

Meanwhile, I had received a new batch of cannabis/hash oil. Three vials to see which one I would respond best to. I took the first syringe and tolerated it well. I noticed that small improvements happened. A wart on my index finger disappeared. Blood clots gone. Whatever type of horrible, painful bowel obstruction that was, it’s nearly gone. Thanks to cannabis. It’s all I take.

Second syringe hash oil was still alright and I started feeling hungry. Great feeling. By now, I have lost nearly 30 lbs. A great downward, scary spiral. Just the mere ‘thought’ of food made me ill.  However, I know what happens once you can’t eat. So, I would cook these great, tasty bone broths and I would sip out of a cup. The heat of the broth felt so nourishing, especially in the middle of the night.

Now, it was time for the third syringe with cannabis. I took the first ‘grain of rice size’ and felt just a momentary ‘burning’ but then it was O.K.  When I woke up around midnight with the same rollercoaster spasms, I took the prepared hash oil, which I had near my bed. Barely had landed in my stomach, when immediately I became so very nauseous and the feeling of hell fire burning me alive in my stomach!! I vomited all over myself, the bed and was so sick I thought I may have to go to the Emergency room. By the time I changed my bed, got into a bath (warm, not hot!) and went back to bed, I was totally exhausted, shaking and crying.

I was very upset with this batch. THEY FORGOT TO BURN THE ALCOHOL OFF!! That is nearly 95% PROOF that hit my stomach full force AND without food.

Lost so much valuable time just trying to figure out what type of strain and oil to use. How much of it to use? With food? or not? No one to ask all these questions. What if people cannot take 1 gramm per day? Will it still perform? Meanwhile we had the new CT scan. Finally had it interpreted. I may have had a ‘mis-diagnosis’. I may NOT have Ovarian cancer, which was treated with a non-working chemo for nearly 1 year. But, instead I have lung and liver cancer. (Oh, still the tumor on the aorta too. It’s been there so long, I tend to forget.)

At least I can eat. I am starting to ‘think’ about food again. I wonder what people do, that don’t cook ? Or know what to eat? Had friends over yesterday and cooked ‘crackling pork roast, potatoe balls, Sauerkraut and mixed salads. I ate 1 potato ball with sauce. MMM. I guess comfort foods it is.

The CA 125 (which stands for ‘ovarian’ may not be the proper test anymore either. Right back to where I was, nearly 4 years ago. After diagnosis, going to Europe. I still have my frequent flyer mile ticket and am planning going this spring. As I said to my oncologist ‘come hell or high water.’ Want to celebrate my 70th birthday with whatever family I have left, and old school friends.

When I had my INR finger stick to determine how well my blood was running (clots) my local doc was soo amazed how quickly this had healed. I had questioned the nurse to take less of the Warfarin but she argued and insisted. So, for another week I took the strong dose only to measure 8.6 which is WAY too fast.

I am losing energy. This is getting so very long. Friends are still close and caring. Some of my family, not so much. Hurts but ‘it is, what it is’.

So, for now I feel so very much improved and the thought of even having to go onto an ‘Oral chemo’ just really has me in a ‘flight mode’.

Cameron still having to do all the hard stuff. I can’t even begin to imagine, how it would be or where I’d be, if he were not helping me. So, this ‘crap shoot’ keeps going and we’ll see what comes next.

 

24 Hours in the life of….

Aside

As days passed in a haze of pain and misery, not knowing why I was hurting so bad.. and why the Vapors were not working. Coupled with such debilitating nausea and loss of appetite that I rapidly lost 22 lbs before one month was out. I was trying desperately to slow, halt this slide toward starvation…As a total Foodie and passionate cook, not being able to cook/eat was so sad. Cameron came to help out and take me to the store. It had been days since I’d been out. But only a few minutes in the Grocery store I had to leave very nauseous. Sight and smell of food was ‘disgusting’ to me. I asked to hurry home.

Weak and sick, so sick. So much in pain. PLEASE-DEAR-GOD-MAKE-IT-STOP-PLEASE-PLEASE-PLEASE…..crying and snot running down the same time. That’s all I have against the pain. If I take morphine, constipation so severe, same pain.

I had been off the cannabis for 3 days and decided to restart with the original  ‘rice size’. I swear, that only 3+ hours later , pain subsided and I could ‘go’. But, at night, still between the hours of 1-4 A.M I was in Painhell!! I noticed, that this pain was like a ‘rollercoaster’ peaks and valleys. I thought: this is NOT the cancer, this is the COLON trying to PUSH and if it is blocked, then the matter pushes against your stomach, which immediately makes you sicker than a dog! Being nauseous from NOT eating is different. Learn to listen to your body. The cycle continues IF there’s no relief. In the pain category,

I would judge this way: 1. Kidney stones, 2.Bowel obstruction, 3. Childbirth. (I’ve had all 3.)  Bowel and Birth pain is about the same with ONE HUGE difference: After labor pains you get a lovely, little baby and then it’s over.  With bowel obstruction, all you may end up with is a bag that doesn’t match anything you have.

As lay helplessly weeping and hiccupping, Cameron came to sit with me, talk and hug me.

Then I learned these small but oh so important improvements.

First: I manage the pain throughout with smaller portion but more times. Right now, I take this times 4, so it covers me DURING the spasm time. Then, I take some ‘vapors’ against the NAUSEA. I’ve cooked a strong beef-bone stock and this is what I divided into 2 batches. I take 1/2 cup of hot stock and the warmth that I feel going down, is priceless. The instant relief one gets is miraculous. So. Now I could start to eat. (Cameron did not inherit any cooking genes.) When I woke in the morning without ANY pain nor NAUSEA, I sank to my knees, just overwhelmed with blessed, heavenly relief.

BRAEKFAST: 1/2 cup stock. 1/8th Melon, a few vapor puffs, wait 10 min then 1/2 sandwich.  ( A few vapor puffs, wait, then LUNCH: 1/8 of Melon, 1/2 bowl of Spaghetti with only a little garlic taste and butter, plus 1 German Hamburger. Later: Tea with 1/2 slice bread.

DINNER: Left over Spaghetti, same way with 1 more hamburger.

I have learned to PUREE my food so it will NOT become a harsh mass. BE kind to your colon and learn to eat ‘different’. Your brain only knows ‘what was’. That’s why we want to ‘sit down with the family and eat a nice dinner.’ Well, of course you can sit down with them BUT you cannot EAT like them. We now have a new way of eating. Small portions, pureed so I can have (organic) meat-protein as I’m not allowed much Vitamin K. (Blood clots from chemo). When my friend Silke took me to CT scan and then out to Lunch, I’d asked to have this great soup ‘pureed’ and they are more than glad to do this.

To fight cancer successfully, you should really RESEARCH well. Go to: www.phoenixtears.ca learn how to make it. http://phoenixtears.ca/videolibrary  THIS IS NOT IN A DISPENSARY. You have to find someone to make it. IF it is NOT high in THC content and it’s not been decarboxylated FULLY— then it is NOT Rick Simpson’s oil (RSO). Suggested is 95-98% of INDICA strain .( SATIVA is what is used more for brain matters such as Epilepsy, Alzheimers.)

The latest link is from a Swiss clinic, which reports marvelous successes. When you click on link, there are little Flags which depict language uses.

http://www.qcmaf.eu/our-swiss-clinic-opens-on-the-28th-october

Friends have asked, how much do you take? Well, it is different for everybody. That’s why you start so small. But, rule of thumb: If you ‘poop’ like an elephant, it’s too much, if it’s like a Hummingbird, not enough. (That’s one of the ‘side effects. Great, huh? FOR US it is. I have managed to get it nearly right after 3 mos of hit and miss.

Still waiting on CT scan results. SOO many desperate phone calls and messages. SOOO many people in PAIN. SOOO many ignorant people.  Be at least open minded. Research. You may just save your or your child’s life. There has been an Exodus to Colorado by parents who bring their very sick children to have this PLANT medicine. NO one should be denied to help themselves and their child.  I had to make a decision, when Chemo was in-effective, I remembered this quote: When you are on the edge of a cliff and there’s no way out, you better grow wings OR take a LEAP of faith. This is what I did.

 

48 harrowing hours

I am astounded that I am still here. I am not exaggerating. The whole past months I was continuing with cannabis, I was in so much pain that I was just an exhausted, weeping mess. Every night, between 1:00 and 4:00 A.M I woke up with great abdominal pain. I would try to take 1/2 Ibuprofen, with a half of Tramadol. Might as well spit into the wind. I would put heating on it, I would fix tea, etc. I twist and turn and I could not sleep. Could not figure out why MJ was not helping much.

The next thing that happened was as I was on the couch and my abdomen was extented and I had ‘gained’ 17 lbs starting chemo. I kept telling the nurse, I don’t know why I gain  as I can hardly eat and have to have Marijuana vapors just to get a few bites in. Well, December 29th, the day when this ‘hard knot seemed to ‘snap, break, sharp pull, etc. I nearly blacked out with pain. Some time after I had the urge to use the bathroom. Seemed like an elephant got there first.  I had lost 16 lbs in 2 days. I am holding my ‘old’ weight even though appetite is still a problem.

The way  I am dealing with food is different now. It occured to me that we always expect to sit down and eat our plate. When you’re nauseous that way too much food to look at. So, I wouldn’t eat. BUT you HAVE to eat. Then I had the idea to minimize. I am using my small, tiny prep bowls and would put 3 grapes in one, 2 apple slices in the next, banana, etc. In between, I would use my MJ vapors to produce appetite long enough so I can eat a few bites but I ate throughout the day. I’ve become addicted to Wendy’s Chili. When I can’t cook, that’s is great to have.

The other worrisome change that happened was my mental agility. I felt as if there was a  steel band around my head. Pressure. I would talk to my friends and after every 5 seconds I would ask, ‘what was I talking about? Where am I going with this? It made my friends pay excellent attention as they had to remember.  NAUSEA. NAUSEA. That was my companion all day. I just did not know why. Then came: Depression, anxiety, paranoia, nausea, loss of appetite,  I was getting scared as I felt I am falling into an unknown hole. But by being unable to eat, I was nauseous because I had no food. Terrible catch 22. Since I was already up, I researched Rick Simpson again. I had always used the You Tube video info. I knew that one cannot overdose on Marijuana. You may get really sick, they said, like bad drunk but you will not die as one  would with alcohol. I am the living proof.

There were the ‘Side Effects listed, if you take too much stuff. I had overdosed regularily for 2 months. All of the symptoms that are listed  further up are the ones. My goodness. Trying so hard to save my life- may kill me! But from chemicals NOT MJ. I stopped right away to hydrate and try and flush it out. But I was so nauseous. VERY surprising, I had absolutely no withdrawal or anything like one would with some REAL BAD drug. Not addictive UNLESS you decide. When I’m well, then I’m done stuff!

Doctor exams, all well. They said not to try to diagnose myself. I said, well, I’m sorry but I had NOT HAD the best of luck with proper diagnoses. Besides, that’s what we do. When things are not really helping, you just want to do it to get it done. Just want the pain to stop. Just that tiny bit of ‘mental problem’ the weeping, etc. is so very painful (even if it is not you) that ‘anything’ would do to ram it in there to STOP.

My blood pressure , three hours later when I saw doc, was still 190/95. She said, she could not believe that I did not have a stroke. Also, the horrible, horrid abdomina pain was an “bowel obstruction’, which is fairly common with chemo. (Also, chemo injures the colon. A woman from my support group, died because most of her colon had become thin as paper and then broke when fecal matter moved through. Because I had been regular I did not know.

CA 125 cancer marker numbers were UP but not much. Doc said, what with all that trauma of colon and nausea and a new Lab may be responsible. I am NOT starting another chemo. My colon is trying to repair itself. I did say again, that I did NOT think that this was the ‘Cancer’ . Maintaining that 1/2 of an Ibuprofen would not help managing cancer. Besides, it would also be painful during other hours. (Oh, excuse me. I just ‘diagnosed’ again.  :-)I think it’s healthy LOGIC. I’ll just keep it to myself. Tuesday CT scan to see ‘inside’. At the cancer center I was so manic and wired, that I had to ‘suck’ on my vapors to get rid of feeling. The problem was, that there was too much SATIVA in it. This works on your mental receptors. That’s why they are using it on Alzheimer patients now. INDICA is the one for cancer and many other illnesses. It is usually mixed because Indica seeds are very hard to come by and GOVERNMENT does NOT allow the cultivation. So, we have a ‘lower’ quality. I suppose, Gov wants to make money too.

A friends’ 95 year old mother is on this for Alzheimer’s and doing pretty well. (She still has Alzheimers but not so severe and has bright times.

While I was gone, my sweet friend cleaned the whole house! Vacuumed. Had taken the morning off to give me this gift. THIS IS WHAT WE NEED. Someone to help. When I walked in, I cried. She also came after work to stay with me until my other friends came. They had gone out for their anniversary dinner. (My friend texted if it was possible t come, not knowing. ) I will cook you a 5* menu when I’m better to make it up. Love you guys.

Also had to get back on Warfarin because ‘those numbers’ were too low.

Trying to get cannabis after my son left for a little time off, turned out to be a very stressful circus. It has become harder and harder for me to get this ‘paste’ down, even with aplesauce. My gag reflex is the best working thing in my body.  I was anxiously awaiting my appointment for blood work to see new results. Also had appointment with my ‘old’ Oncology surgeon who gave a big hug and smile. I had wanted a CT scan to see if the tumors had less or more activity. I mean, I had 2 hours between appointments and I didn’t want to make an extra trip.  Not till Tues.

The night before my appointments, I was not feeling well. But, as usual since there is nothing  else I can do, I used my homespun tricks. Finally, I got up at 1:28 A.M to take a hot bath with epsom salt, which always helps. I ran the water into the tub, added salt and could hardly wait to go into that wonderful warmth. I figured since I’m already here, I might as well shave my legs, now that’s it’s growing agin. Suddenly I was overcome with a nausea so severe that I thought this is BAD..black spots in front of my eyes and I could hardly breath. I propelled myself out over the rim of that high, old tub, as I was afraid of ‘blacking out’ and drowning. There I was. The skin of my whole body was Lobster red. Never experienced anything like it. I looked over to the tub and all I said was, ‘well, that won’t do.’ I crawled to the bedroom because I was shaking uncontrollably and felt like fainting. I need  HELP I thought. I called my good friend Bonnie. There are REALLY friends you can call at that time. She drove right over. She stayed with me until my other friend Berle, came to take me to Grand Junction. As we were sitting there, talking, I remembered suddenly a sentence in a conversation that I had with a nurse friend, right after the blood clot incident. I was telling her about my tub/salt preference. She looked at me funny and said: YOU CAN’T TAKE A HOT BATH WHEN YOU ARE ON CUMADIN! WARFARIN!! I had a severe reaction and nearly had a stroke. That’s what that bright lobster red was. I had taken the pill the evening before.

Some people received wealth, Beauty, talent at the time of their births. I? I received 9 Lives. THANK GOD!

This is for my support group “TEAL Warriors:

Dear friends. I’m using this way to answer requested info.

Marijuana is the plant.  Cannabis as a product, divided into INDICA and SATIVA  (many otherstrains and combinationa.) ONE product dowes not work on everything. It’s like cooking. Let’s sa, recipe calls for Parsley and Dill , they go well together but if you add some curry that’s not good. The right strain for the ‘right’ illness. You need the TEARS of PHOENIX model, not just ‘some oil. I can’t afford Rick Simpson’s oil as it is %4000.00 for 3 mos. Still WAY cheaper than chemo but WE have to pay this. I needed an EXTRA $1200 per month to buy my cannbis. My son thinks, that these prices were before it became legal in a few states.

My son gave me the Link to a Foundation to help financing the treatment. I can’t access the link right now but I will later.

You remember how you start? a small rice-grain size with European butter to take it. The higher fat content will intensify the healing properties. What cannabis does, is to instruct the cancer cells to committ suicide without harming surrounding cells. This could have been the reason that my first month on it, the numbers were lower.

Tears of Phoenix is NOT like cooking OIL. It’s a dark, dense PASTE. You take it x3 a day. Also supplement with Tinctures, Vapors and WEW. (What ever works.)

Victoria, and all of you precious friends try to get this. I cannot promise ‘it’ will do exactly the same with you guys. Everyone is different. The break through from blocked bowels was the prolonged (2.5 mos) use of cannabis. The properties of the LEAF PLANT had worked it’s way through, THANK GOD. After that, the terrible pain was gone, the nausea dissipated. Oh MAN, I can take a deep breath without thinking I’m throwing up. Just the next day, I’ve eaten more than the other 3 days combined.

Research : Rick Simpson but this time NOT on You Tube. There’s a new web site full of GREAT info, testimonials. Go to www.marijuanadoctor.com  If you need more info, CALL> xxxooo

CANNABIS vs CANCER

At first, I wanted to wait until I had results from CA 125 blood test. But, meanwhile, things change and my memory is not the best these days. In 2 weeks, I will start my 3rd month on cannabis oil ONLY. People have asked me why I would not take anything else with it. Like, chemo or pills. How would we know WHAT had worked? I need to know that it was the cannabis. It’s vitally important to many people who are waiting to ‘see’ how things turn out with me. Of course, many cancers are different and this treatment is too new but we do know, it works!

I don’t understand it. Someone has cancer. They do all the conventional treatments. Then, one day, while they are settling into their chemo line and sit there, while Toxins run into the body and they’re trying so very hard to use gentler Visualization of this ‘liquid’; why they would NOT run out and get something far less damaging. I thought, once they see that it works and cancer numbers are coming down, that this would convince them. Well. Knock me down with a feather!! That did not happen. I suppose people will do what they KNOW. No matter that it fries their intestines, damages veines, loss of hair, appetite, sick, sick, sick till the cows come home. And you want to use it again? How many people know that Chemo comes from Mustard gas??

Well, then comes the day that they tell you, you have become “Chemo resistant’. When you have no choice, then you eat dirt if it helps!! Wouldn’t you think that in over 50 years of cancer reserarch and the BILLIONS of dollars for research, they’ve not come up with something better and more humane. Already in 1989 the Cancer Industry made more than 100 MILLION per year from cancer, in the US alone. What does that tell you? Huge business.

Christmas was a quiet affair and sad. Grandkids are too far away, and so is family. No tree this year. No money for frills. It all goes to ‘Cannabis.’ This ‘new’ batch though was MUCH more pleasant to ingest and it only takes applesauce to get it down. The taste for that split second in my mouth, gags me. I would never make a ‘Druggie’.

Here is a BIG shout out of THANKS to the group: German Girls Living In America.’ It is due to their compassionate collection and donations, that have made this possible. Ihr Lieben. I cannot thank you enough. Also, your never wavering Belief and support means the world to me. Other friends have made generous christmas checks and so I could have another month.

Cameron is in New York. A well deserved Respit. I’ll try not to bother him while he is there. (Hope you have LOTS of good times, son.)

To get a refill on cannabis, I called the producer of this oil. (Usually, Cameron does this for me as it takes over an hour to get it to Montrose.) This turned into a circus of frantic messaging. But, finally that nice guy got a ride and DROVE all the way to bring me my medicine. At $550.00 this makes it very expensive and NO Ins pays for this. (NOT even Affordable Care  Act. 🙂 This last about 2 weeks.

I’ve read that to be better equipped to fight cancer, one needs to be ‘comfortable’ with death. Accept it. Only then can you move on. (Seems paradox but, if that’s what it takes?)

So. I’ve written and determine what is to happen with my (meager, few) possessions. I’ve decided, that this spring I will go to the gorgeous Black Canyon, find me a pretty spot and when the time comes, put the Ashes there. Take a photo of the area and breathtaking surrounding of the canyon and its Billion year old rocks. But, of course this little excercise is not what is meant. Taking stock, asking and giving Forgiveness.

In pondering this one, it surprised me how many people are holding on to ‘Stuff’. Someone very dear to me, brought up an incident which happened over 25 years ago! It was nothing earthshattering but obviously bothered enough for so many years. Need to forgive. The heart is big and elastic. It will adapt to any size. Just not too small.

I’ve been doing pretty well for most part. Twice, there was an episode and always at night, that the pain was so excrutiating that I layed on the floor, in fetal position, just howling. I put my feather comforter over my head, so the neighbors wouldn’t hear. But, there was nothing else I could do. This took about 2 VERY long hours before it abated.

I have had big problems with loss of appetite. (One of the 4 symptoms of ovarian cancer.) I look at food and I’m hungry but then it nauseates me. No matter what it is. THIS is what is soo debilitating for cancer patients. They starve to death.  If I did NOT have my MJ Vapors to produce appetite, I could not eat at all. This way, I can eat small amounts and get appetite.  Even though, I’ve lost 15 lbs so far. Cannot and am NOT allowed Dairy as it produces painful inflammation. (Eggs are not dairy.)

Yes, I have Morphine, Tramadol, Oxycodon, etc. I cannot take ANY of it. The side effects are too severe. All I have, is my little 600 mg Ibuprofen. I don’t ‘like’ it either. It damages your liver and I already have a ‘cancer leasion’ there. But, what to do? At some point I said, ‘Dear God. I’m not doing this anymore. I can’t stand it anymore. It’s been (nearly) FOUR years with this bout. I just want the pain to stop! Yes. Cannabis helps and I do take it when I go to bed. But then, it wears off and by the time I get more in, I’m already in pain. (GOSH. This is sooo BORING to talk about. I’m sick of it myself. 🙂

Wishing all of you the VERY best of 2014. Make it YOUR year. Change your lifestyle. Walk a little more. Be kind. Be tolerant. Thank you for sticking with me through this journey.

             HAPPY NEW YEAR.

Look Ma! .. No net!

So. How does this saga continue? On Oct. 14 th with Cameron in tow as well as Adam, who was visiting, I showed up at the Cancer Center. I visited Sue first.

Sue has had ovarian cancer over 3 years ago and dealing with a recurrence right now. It is really upsetting and worrisome that NOTHING was detected. She had her bloodwork and tests, she had her CT scan and all showed ‘clear’. She had complained about pain but also ‘diagnosed’ herself… thus saving docs the trouble and cost of medical school. She kept telling her oncologist that she may have ‘appendicitis.’!!!! I believe that ANY time a cancer patient complains of a long lasting pain, you don’t send her home. They all trusted these tests. And then, she had emergency surgery and it was finally noticed that she has new tumors. So. Now a much worse scenario. But she’s fighting the fight. As one motto says in our group: Fight like a girl”. Big shout-out to Gerald, her husband, who is such a tremendous help with everything.

We’ve lost 3 of our ‘Teal Warrior’s. Wow. So young. There’s Sonya, not quite 48 years  who did not get to see her grandchild being born. Not even the measly-amount of 3-6 mos ‘given time’, was upheld. We are all reeling. Of course, the unspoken fear is, that ‘YOU’ are next. We’re all moving in a little closer to each other, as if for protection. Who will the Boney guy pick next? You all duck!!

Here I am, after a whole month being absent from the ward and visiting Sue, I went to Doc’s office. Cameron was there. First thing: Scan shows no new growths. No significant changes. I asked her if she thought I could stay off chemo for another 6-8 weeks and give this Tears of Phoenix’ a chance. If we start chemo and, at the same time, take this, I won’t ever know if it really worked. Since the last 2 chemo’s did not work anyway, I’m not losing a lot.

It does feel odd. No chemo. No radiation. No magic pill. Only a tiny, dark powerhouse. I spread that grain of rice-size cannabis on my cracker and the taste of it, errupts in dramatic shakes all over me. I do not like this at all. Yuck. I have now sheduled my ‘waking errands and chores’ before I take anything because I am totally useless, once I have it.

It’s a good thing, one can’t overdose. I thought I was ready to doulbe my dose. It had been 10 days, although when I have an appointment or some things to drive to, I won’t take anything because I cannot function. After about 35 min there was this pressure around my forehead and my surroundings were compromised. Like swimming through Molasses. I tried to get up but couldn’t. It took all I had to GET up! When I finally managed to be upright, I bounced off the wall like the bumper-game machine. That night was really horrible. Dreams and images, torn and loud.. …but I noticed that was me coughing my lungs out. Terrible cold to boot.

My grandson, nearly 19 years old, is here to help me. All the way from Alabama. They move 10 years ago but he’s till our Colorado boy. Have not seen him in a long time and I sure hope he can withstand my present life. We had the ‘booze-drug’ talk and a few others. Done. He has worked in the yard, cutting down some of those silly trees that have thousands of seed pods to procreate and they’re such a nuisance.

What if ‘Tears’ of Phoenix’ does not work? Well, there are a few chemo’s left (that may not work either.) Meanwhile I now have problems walking with these compromised legs. Still taking Werferin but can’t go far. Maybe around the block. I really have to increase my distances. I am just tired.

I borrowed Pumpkin. My best Poodle buddy. He snugggles up and stays close and is totally devoted. I wish he could fetch and carry. But, I have to get up and go for a walk with him. (NO! Please. No dogs for a gift.) I have Cassie next door, whom I love and visit. There’s Bruno, another fun dog and Pumpkin. Those are enough.

 

 

 

Chemo Limbo and Tears of Phoenix

There is always something else to rattle my brain and make me shake all the way to my “argyle socks’, if I had any. I’ve had another CA 125 (the cancer marker blood test) after my second ‘Doxil’ chemo to find out how it is working. Well, the Hawaiian Punch carried NO punch. My numbers went up a few points. In itself not a drastic change were it not in the middle of CHEMO treatment!! Now what? I can’t quite understand it. This had never occurred to me that chemo may not work. Doc is not giving me another chemo until we find out why this one has not worked.  She will say:’ Cancer cells got smarter’.

What is our option now? Atom bomb? Next step is CT scan. Is there, perhaps a new tumor? Is this the preventing factor that cancer cells don’t die? In a few days, this question will be answered. Wait for blood test, wait for phone call, wait for news, wait for next step. Wait for CT scan. Wait….

I had researched the ‘Tears of Phoenix’ quite a bit a few years ago but

THC and CBD mixture the size of a grain of rice

THC and CBD mixture the size of a grain of rice

could not find anything on where they make them, who makes them, what it is exactly. Meanwhile, there is a LOT of information on You Tube. The founder’s name is Rick Simpson. He had to leave the country, years ago because the Fed’s were after him. This goes with all the horrid meds are allowed but let someone invent something cheaper that actually helps, well there’s hell to pay. Of course, Medicare (Nor any other ‘care’) will  pay for this. So it was out of my budget zone.

Then, something absolutely wonderful happened. A Facebook friend told me that she and a few of her friends were talking about my situation. The exorbitant cost of being sick. She asked if I had a Pay Pal account because her friend would create a “Widget’ for me. (A ‘what’s -it??) Never heard of it. But soon, there was this Widget on our Camino page (under ‘Read our Story’) as well as on the group page.

Pretty soon, I heard the ‘ding-ding’ of e-mail alerts on my I-phone. I looked and saw names I did not recognize, sending money. More names, some I did recognize from my German Group. ‘German Girls Living In America.’ Had not known much about the other group called ‘Laester Schwester’. Seems they are at odd with another. BUT, for my sake, this time, there was only the desire to help, putting aside their differences. (Unlike the Government, this seems to work.) So, with utmost gratitude and waves of overwhelming feelings of so much kindness and sharing of even a few dollars, had me crying. Their generosity now allowed me to purchase the very concentrated Hash oil to ingest. For the amazing hash properties to go in and tell this ‘smart-ass’ cancer cells to commit suicide.

I really, really want to thank all involved of helping me so I could buy this stuff. I was a little apprehensive. Here I am again, taking and trying more ‘stuff’. Going on some Internet info and FAITH that this will not only work but better and cheaper than chemo!! –which does not work.

Help Inge get treatment that works.  You can do so here (ignore the ad on top) where it says “Pitchin“:

I take this on a cracker, with just a little butter. The size not much larger than a half a grain of rice, and take it 3x per day. The tiny Powerhouse looks like a ‘ mouse-turd.’

So. I had my first cracker with the oil on it. My son took me out for breakfast. Not knowing what to expect, I thought oh, this is not so bad. Other than a little off center, I didn’t feel anything. Luckily not, till I got home. Then had to sit on the couch. Fog descended, things seem to move much slower. I felt like I was talking very slow myself. My son, meaning this in a good sense gave me a double dose for lunch… just before he left to drive to a wedding. Well, I sat there much later, still. I thought, ‘good Lord, I sure hope somebody comes and feeds me’. Couldn’t get off the couch. Fell asleep in the middle of one of my favorite programs. I’m thinking, the world needs more of this. They won’t argue, fight, kill each other. My foot started to feel much better but I’m not sure if this is a coincidence or some ‘early healing.’  I can’t believe that this tiny, eensy =weensy bit has that much POW.

So. After 4 days, we double the dose. I hope I have enough time taking this hash oil, before someone decides to throw chemo after it. I want to see how it helps but if I do get another chemo, I won’t know for sure whether the cell death is due to chemo or hash oil. But then again, if chemo does not work…again… except make me miserable and sick, I may ask for more ‘non-chemo’ time to allow hash oil to work. I guess, it depends on the CT scan results.

Meanwhile A BIG, HUGE Thank you to my German ‘Girls.’  Ich druecke euch alle in tiefer Dankbarkeit, das ihr mir diese Lebenschchance ermoeglicht. 

 

Door Number 1-2 or 3?

A few years ago, there was a T.V show with that title. Contestants would go through a series of differnt question they had to answer correctly and then they got the choice of the 3-curtained doors. Two had nice and sometimes valuable prizes, one of them a ‘boobie’ prize. A bale of hay, or a pile bricks.

I feel like I got one of those doors.

Two weeks ago, I had a CT scan to determine how well (or not) chemo therapy was doing and, what change, if any, about the ‘tumor.’ As many scans as I have had, this result was very much anticipated.

Lab person was going to use my port to access veine for dye. Not sure what happened but the pain and burning sensation was so severe, that I yelled and came off that chair. Startled, nurse pulled it out quickly. To allow her to do this again took great effort.

My friends and I went to have lunch down town and theybought  bought this delicious Gelato for me to minimize ordeal.

After I got home, I waited for the call which would give me results. There was Tuesday evening, Wednesday, Thursday. Nothing. Friday I called Oncologist’s office only to find out she had left.

Then, I called local doc. I knew they also would get a copy. Left message. Then I went grocery shopping. Walking is still an effort. Although swelling has receded, there are places which are painful and I have to wear compression hose, which go up to the thigh. After walking some, they roll over and then there’s a big, red indentation and I constantly have to pull it up. Annoying. I need one of those stocking holders. As I drove home, my cell phone rang and it was the nurse from local doc. She said, they were looking at scan and that blood clot had not dissipated. Was still there and in precarious place. I needed to go to Hospital as soon as I could and have another Ultra sound. I was really confused why they would see the ‘clot’? She said, that scan reaches a larger area.

So. Went to hospital and got scan. Waited till they send it to doc before I was allowed to leave. He did tell me that tumor had receded. But not how much, or anything else, since this was not his expertise. Waiting some more.

Tuesday, chemo day and appointment with Oncologist. So. This is the good news. Tumor has shrunk from 5 cm to 2.2. Doing the happy dance for that. Now I am hoping, that these 2.2 cm will be gone in another 2 month. Then she says, that blood clot did not originate in the leg but in the abdomen. It was very unsusual that the clot would travel DOWN instead of UP. Which would’ve been very dangerous. I totally believe, that I had my little miracle. My blood tests, which I have to have prior to each chemo is ‘perfect’.  (I asked what I was doing there if everything is so perfect!!)

The down side is, that the chemo is destroying my veines. There’s the catch. I can’t stop chemo now but for the veine, it’s a horrid thing. Which door to choose??

After so many rounds, the effects from the chemo are felt more and more . Most of the time I am very fatigued and can’t catch up with house and yard work. For 2-3 days, bones hurt and I am freezing form the inside out. Depression is marching in as though it belonged. Watching a commercial the other day, I started crying although there was nothing about it to cause this. At the store, suddenly there are tears. My nose is dripping constantly, until we figured out it’s because I have no ‘nose hair’. No eye brows, lashes … nose hair. Now that it is getting warmer, the pretty wig feels like a fur cap. My memory is becoming faulty and this what we call ‘chemo brain’.

Bills are piling up and that one night stay at the Hospital cost a whopping $6800.00 and of this $1,133.00 which I have to pay fully. I am feeling overwhelmed. It shows that one cannot be allowed to get sick in the ‘Golden U.S.A.’ I’ve not opened the bills from St. Mary’s.

I have had wonderful and caring support. Some from people I have never met. (I received a $25.00 donation from a ‘Stranger’. I was so very touched.) I get uplifting and caring posts nearly every day from a new and precious friend ‘Michele M.”  Two days ago, I had a particular hard time, when a beautiful sun flower appeared on my Facebook wall. This helped more than any pill I could have taken.

I also got to drive to Telluride to visit my son. A dear friend drove as she was certain, this may be too much for me, to start. (She was right). A most beautiful, perfect day and drive. His new apartment is gorgeous and roomy. I had prepared lunch to take up. (Hungarian Gulash, Spaetzle, cucumber-tomatoe salad and fresh strawberries for dessert. We drove to the end of town to see the many waterfalls. Azure sky and awesome surrounding. Good to breath and be out of this house. It was slow going as the altitude was making walking more labored but I did walk from mid town to the apartment. Small victories.

In a few days, it’ll be my birthday. I am totally grateful that I get to be here and celebrate, although this will be the first time in many years, that I won’t (can’t) host a party.

I still try to reconcile the actual number of my years with my internal years. Where have the last 20 years gone??

 

Too close for comfort.

If this were not my life, I would believe someone made it up! What more can possibly happen?

It’s nearly two weeks ago, now, that when I went for chemo, we noticed my right leg being really swollen. All the way up to the groin and down to the toes. Immediately an Ultra Sound was ordered and performed to check on blood clots. I could hear the return ‘swooshing’ of the blood. NO obstruction, they said.

By the time I got home, it was worse and I was in a LOT of pain and could hardly lift that leg. I called twice on that Thursday, needing help and asking what to do?

They said, it was ‘probably’ lymphatic blockage and I needed to go have it ‘drained.’First, there was this thorough process of marking and measuring certain points, up and down the leg. By the time it reached the groin, we had 68cm. (Used to be almost my waist size.)

The massage felt rather pleasant and I was happy that finally something that didn’t hurt. Came home and was miserable.

I cannot move. Cannot walk. Two steps and I’m done for. The skin is so very tight that I’m afraid it may just crack open. I was to have another massage on Friday. Cameron took me there. When the Therapist saw the leg, which now sported a huge, red-hot area of 20″ inches, she became very concerned. Thought it might be cellulitis. (I thought that meant ‘fat-handles’.) Absolutely no massage. I was so worried and requested that this leg should be seen  by a doctor. Easter was coming up and people go out of town and help may be scarce.

She called over to the E.R and then wheeled me over. They inserted an IV. (They did not access the port as that may bring a different problem.) My ‘old’ doc came and I sure was glad to see him. He just knows my whole history. They decided I should be admitted and stay for observation overnight. They were not sure whether this red area was an infection. The Ultra Sound showed at least 3 blood clots. What? Where do they come from? Well, that’s the $64,000 dollar question. Could be from chemo. Could be from the port. Could be from not being able to move a lot. Could be that when I stopped the Ibuprofen, the blood thickened? Well, just a guess. I feel ‘betrayed’. I was soo good to my body the last few years and this is how it pays me back? Childish outcry.

I felt so removed from reality. This is now my LIFE!! A leg that is the size of small tree.  Luckily, cellulitis was ruled out. (Staff and hopsital were great.)

A friend, who is a retired nurse had agreed to stay with me, so I could have help. That fell through. Cameron had already left for Telluride. He has to find a new apartment since winter season is over. We were supposed to fly to New York for a dear friends’ wedding. Certainly I can’t go.

As I layed there, leg way up and in white TED hose, totally feeling sorry for myself, the thought came to me HOW VERY LUCKY I WAS! Yes.  In all of that, I was so very close to disaster. IF she would have massaged the leg, the blood clots could’ve been set loose and traveled to lungs, heart, brain. BOOM!

Had I ignored all the little signs, at that point and went to Germany, this could have turned into a full blown disaster. So, even in all of that, I was protected. Now, all I want, is to just walk again. Do all of the mundane chores. I would LOVE to clean the toilet.

Friends have been a big, big help. Sending food and coming by. But, there are many hours in the day to fill. I have never been so ‘still’ in all of my life. Whole different reality. Having a problem adjusting to these blows, one after another. Back on pain pills. Of course, there’s MJ. My good buddy. Have very little appetite but this could be because I am not busy enough.

I had to give myself shots. Twice a day, in the abdomen.  There were 8 shots in all. That cost? $611.00.  There’s nothing generic or anything else. Either that or you could die! Also taking Warfarin to help thin the blood. It did come up from 1.1 to 2.8.

I think, somewhere along the lines, I lost a portion of my positivity and good humor. I am cranky and whiney. I am in pain and general discomfort. Now, I have to deal with constipation from the darn pain med. (I don’t know me like that either!!)

No breaks to catch…

I was finally on board with bald and cold head and all inclusions thereof. I was being strong and gracious (except a tiny fraction here and there).

Back in December, on one of my visits to Cameron in Telluride, I had noticed that my upper thighs seems to be really heavy. I thought, this was because I had not been able to excercise since the last two surgeries. I blamed the high altitude and steep incline to his apartment. When I was back home, it disappeared only to repeat this on my next visit.

I had mentioned it to Cameron because this puzzled me but did not give it more thought.

I was starting to feel better. The different pains in my abdomen were GONE. I thought ‘O.K. that’s one good point for chemo.’ Still awful stuff but hey, no pain. I could finally stop the 600 mg Ibuprofen. Felt great about that as at that point ALL I was taking was my daily Thyroid pill. No other meds.

After a couple of days, the pain in my thighs returned. Funny that. I walked a few steps, had to stop and rest before I was able to walk another few steps. What the heck?? I thought, it would ‘go away’. I thought, this is only temporary. No such luck. I could not walk much farther than half a block.

Now this really scared me. I had walked 500 miles only 18 mos ago and now couldn’t even walk around the block? I was stunned. What to do? What IS this new calamity? If I can’t walk, they may as well shoot me. No matter about the ‘hair’, no matter even about chemo. THIS was a real big, black shaky fear. My mind could not even go there. Ever since I was a child, I hardly ever ‘walked’ I ran, skipped, jogged. As an adult my strides were always longer and faster than the person next to me. (Except my son, who is always ahead. )

I could not think straight. My mind was crowded with terror. I remembered Doc’s urgent words when he had called me that Sunday. ‘ The tumor is pressing on the Aorta and can restrict blood flow to your legs. Once the damage is done, it cannot be reversed. You must have chemo and it must be soon’.

Was this that point of no return? Is this going to be my life? Had I brought this on by my own ‘stubborness’ NOT to have chemo sooner? Am I to blame for this? ‘Oh GOD. OH GOD.’

I had foot therapy and could barely do the exercises prior to being hooked to the machine.

Last week, I had had enough and called Oncologists office in Grand Junction. No live person to talk to, so I left a message. Nurse called back and I explained this in very careful words. I had told her that this was NOT due to chemo since I had this before I started. She passed the message to the oncologist and then called me back. Onc said ‘this is probably neuropathy, caused by chemo’. I frowned on that because it was opposite of what I told them. I had also asked to have a CT scan to see what the tumor was doing and if chemo was helping with anything. Too soon for CT scan, they said. Chemo had not had time to really work but we will do a CA 125 this Tuesday.

I could not find anything online that would give me an answer or, even a starting point. My legs hurt and I took a bath in Epsom salt. My veines were more pronounced and there were ‘blotches’ on my upper thighs. I think I need oxygen to my legs, is what I thought before I absolutely broke down and horrible keening bounced off the bathroom walls. I screamed and cried and thought I would lose it completely. Only a few times in my entire life had I felt like this.

So far down in despair. NO one near, no one here. Very alone and felt abandoned. ‘Always have to go through the hard stuff by myself’ , is what I thought at that point. Of course, that’s not really so. But then, I also have chemo brain and along with it, comes its faithful friend ‘depression’.  There is absolutely no way to cut this tumor off and out. There is no way I can have radiation. There is NOTHING anyone can do. The perfect Storm.

I won’t be able to travel. I won’t be able to go walking, hiking in Austria when this cancer part over. I may never be able to leave this house. Those were my darkest and blackest thoughts. It seemed unbearable and I wished I would just die.

I also took a break from Facebook. Couldn’t deal with people’s petty, little problems. Talking about if they couldn’t find the perfect, water proof mascara, that this would RUIN their day. That was the last straw. I know that this is not their fault. They just do their lives. But, when one battles on so many fronts, this was just too much.

Other people just stay away. Don’t even visit or call. I am ‘pruning’ my frienship tree as well.

I sat on the couch, took some ‘puff’s of my vapor marijuana’ so I could just calm down. Had a fitful night.

I had an appointment with my Foot Therapist early in the morning. I ranted and complained about not knowing what ‘this’ was and what to do? Where to go?

He looked at me thoughtfully and said, ‘I think, I know what it is you have. Give me a few minutes to research’.

He came back with some medical research. ‘Here, he said, this is what you probably have.

ATYPICAL INTERMITTENT CLAUDICATION.

What? What? What the hell is that??

‘Claudication or limping . The Term is associated with the Roman Emperor Claudius, who was notably lame. As a medical term it refers to a cramplike pain in one or both legs, which developes on walking and may eventually cause a limp.

The usual cause of claudication is typically that theyhave to stop walking a set distance because of pain in the calves. After a short rest, they may be able to walk another few steps. This is called Intermittent Claudication.

A rarer cause is spinal stenosis (narrowing of the canal  carrying the spinal cord, causing pressure on the nerve roots that pass into either leg.

My cause is different, that’s why it’s ‘atypical’ but the end effect is the same. With me, it’s the tumor that’s pressing on the aorta and restricting the bloo flow.

Oh, my goodness. That’s IT, I said. I was so relieved that ‘it’ had a name and a starting point for me to research and get help. He gave me some pills “Argenine Plus’, which is a cardiovascular aid. I looked at that little, brown bottle as if it were Manna itself.

I took 2 Pills that Friday without noticing anything but then, it was to soon.

Meanwhile, my best and childhood friend had flown in and what a rock she is. We met in Kindergarten, in Germany 60+ years ago and went through all the trials and tribulations good, bad and horrid times. No matter what, she’s always there. I was soo glad to see her.

Saturday morning we got ready to do some shopping and I stopped at the bank to get a few dollars. I came back out and as I approached the car, suddenly I noticed I was ‘running’!! My usual fast stride. Ohh, I cried out loud, ‘did you see me? Did you see me running?’ Tears yet again. Joyous ones. Once, the pills wear off, then it’s the same but in between, I can almost walk normal. So. I am hoping that with the next 2-3 chemo’s that sucker in there, is GONE!!

Then, finally the book which my son had ‘ghost written’ came out. That was a proud moment. ‘The Cat Whisperer’, by Mieshelle Nagelschneider My ex-daughter in law. A beautiful and great expert on cat behavior.

Next book?  “Camino not Chemo.”  Maybe not that title but our adventures. Cameron will unveil the new working title soon.

Tomorrow is chemo day. Friends are coming with me. My relief and new hope were so enormous, that I planned and had a wonderful Lunch for friends and my son on Sunday.

The worst nightmare in recent history is receding. THANK GOD!

Goldilocks no more.

As the days were bumping along and I was just about to catch my emotional equilibrium, there came the next surprise, courtesy of chemo.

Went to take shower and got my stuff ready and shampooed my hair, when I felt something weird and unsusual in my hand, as I wiped the soap out of my eys and looked, there it was. A whole big fist full of hair.

Now, of course I knew this was going to happen and I had told Cameron, that I would definitely lose my hair ( I remember saying that this would happen in 3 weeks and 20 minutes) but he had said, ‘you don’t know that. Maybe it’s different this time.’ Cancer people cling to every little lie. So. No matter what you tell yourself and how strong one deals with this, when hair loss happens, many say, it’s the toughest part of chemo. It’s tied in with the little girl brushing her dolls hair, her friends hair, the dog’s hair. It’s having good and bad hair days, when just a few strands look out of place. It can ruin the first good moments in the morning, when after gel and curls and spray, the outcome is not what people expect. So very much is tied up in hair, or the lack of it. The feminin thing. Guys always look good bald. Hair is overrated.

 And so, I stood there with water running furiously, and sobbed. I felt very vulnerable, exposed and naked. Eye lashes will follow and brows as well. Well meaning people say, oh, it’ll grow back’ and they have so many new things now’.  Others, who had cancer previously would say, Just embrace your baldness’. But, we must be allowed to moarn. It’s not business as usual. There’s no strength that lasts 24/7. No matter how old you get, you want your mother at this point. A pain that runs that deep that it goes all the way back to childhood and needing that comfort. (Besides, I already embraced it once, with grace.)

I had asked my Ovarian Cancer Support Group, what it was that they wished people would NOT say to them. Here, some of the comments. When you want pople to hear you and not for them to keep saying how strong you are. When people dismiss their feelings  because they don’t like having to comfort. When they say, ohh, you look so good. Which is quite suspect because, how on earth did I look before this? They are also annoyed because they do not want to talk about cancer all the time. Or, that someone elses’ grandmother’s brother’s cousin had this cancer. They don’t want to hear every cancer story in the universe. Meanwhile we do stay strong because there’s not much else to be. Once in a while, you just want someone to take your hand and tell you, ‘it’ll be alright’.

Thank you, Sue for your warmth and wonderful comforting e-mail.

When I had sufficiently gathered myself, I thought I would like to walk to the Post Office. Had to return the wig, that my daughter chose because it was too narrow, too tight and the color did nothing for my face.

I was about a block and half, when the pain in my upper thighs was so severe and felt like they weigh 50 lbs each, that they just went out from under me and here I sat on the street. Forget the hair. THIS was serious. If I can’t walk, then we have a huge problem. Since it was right by my Beauty shop, I was helped and sat on their chair to collect myself but then it was just too much and a torrent of tears came unbidden.

I remember when I had the frog ‘Timothy’ in my throat while walking the camino at certain times. Here he was back. I just could not talk. My Beautician offered to do my mailing for me as well as re-do my wig from last time. I also found a few scarves/turbans. They sure got expensive. Up to $30.00 each. Everyone cashing in on cancer.

My neighbors saw me come back and came to check on me, since they had not seen me. No word was needed, they just enveloped me in a big hug and told me how much they cared.

My good friend Peggie came by to cheer me up and took me to a new wig shop. I didn’t even know we had one right on Main Street. I’d tried a few on and chose a blond one, that they all really liked on me. ( My daughter said, do NOT get blond.’ Sorry, Sweetie. There just isn’t anything else that looks decent.)

My friend Silke came to take me to foot therapy. This is called ‘Sympathetic Therapy’. I like that name and it really helps with neuropathy.

Yesterday, a gray and dismal day but here again, my friends show up. Peggie took me for a walk while we had ten minutes of sun and then, my favorite Mike came with wife Jodi and son. They brought chicken and we spend a few very nice hours. Thank you. This means a LOT.

I am alright now. Got over the hair-thing. Come Monday, I’ll call my Oncologist to find out what this weirdness is in my legs.

Then, I’ll find out how many chemo’s she thinks I should have.

 

Port and Chemo

February 22nd was a cold and snowy day. My friend Lynne came to pick me up and drove to Grand Junction. I was extremely anxious. The whole idea about insertion of Port and then Chemo, was a hrash tig to swallow. During the ride I made liberal use of my MJ.

The day before my little buddy and Annika came to visit. Their mom had just told them about my situation. When I opened the door, I saw the solemn faces and the minute they came in, started to cry. I asked what was the matter and he said;” I am so sad’. I patted the couch beside me and told him to come sit. I actually put him on my lap and held him as he cried and being scared for me. I told him, that even though this was not what I had wanted or planned on, it would be alright. That I would do all I could to get well and he could help me.

I saw Annika sitting there, crying as well and I told her how I remembered the last time, when she was only 3 years old. She had asked me, if she could see my bald head. I said, sure and took my wig off. Ever so tenderly she touched my head and petted softly, saying “awww.’ Brought tears. She said, she remembers it too.

Blood pressure was still 159! I asked Nurse, who approached with IV, if she was any good with inserting the same. She said, ‘yes’. Well, she lied. It took her several tries and finally called someone else.

As we were waiting to be wheeled into OR, there came the ominous ‘Code Blue’ over speakers. Not something you want to hear before going in.

The surgeon came to talk with me and to explain procedure. Tears came unbidden and this  Doctor said to me:’ We don’t force anyone to do this. If you don’t want to continue, then we’ll call Dr. M and tell her you want to stop.” Well, being chided was not what I would expect. Do they not teach compassion 101 anymore? But, I can imagine if you put people through like cattle, there’s not much left. I told him, that I’d only had 3 days to get used to this whole thing. It was also, the inevetability of it. That nothing would stop this now. That after 3 years of out running chemo, there it was.

The Twilight sleep was very nice. I did feel gentle pulling on my upper chest but no pain. Afterwards, I was starved and we went to lunch.

Next anticipation was the dreaded chemo. Cameron came Monday afternoon to take me next morning to GJ. I woke early, as usual and when I looked out the window, fat, thick snowflakes and everything white. Geez. What else? We had a white-out as well but got there very punctual.

One of my support group ladies had told me to have a cream (Lidocaine) prescribed, which goes on top of the port, so that way I would not even feel the ‘Poke’. Anything I can have and take and do to minimize the trauma, I will. (Got me a MJ refill and I used that a lot as well.)

Nurses in the chemo ward, were not sure about this protocol but I told them since it is NOT smoke, I would use it. The ward itself could use some nice paint and some greenery. Some pictures and ‘warmth’. Very generic and blah. Had some very nice and compassionate Volunteers. Ready to give you anything you’d want. Among a few documents I received a beautiful quilt. Sewn by Lutheran church ladies. I must send them a nice card. I was very touched.

Then it was time for all the ‘liquids’ to be hung. Saline, Carboplatin, Toxil.  I worked very hard not to resist. For that chemo to come in and do it’s job. My Onc promised I would not get sick. She said, ‘I know you’ll be pleased how easy this will be, this time.” I assured her that I really wanted to believe.

We came home right after chemo. In the back of my mind, I was wondering if I can really go past the nausea which was soo very debilitating, the last time. I had prescriptions for anti nausea but 20 pills are $91.00 so I’d left them there. Cameron said, no, I’ll get them for you, in case you need them. Plus he bought all supersize Miralax and Softeners, etc. (That has been more miserable than anything else. To be in that situation again, after I’d just got everything to work normal.)

This morning, now 2 days after chemo, just a tiny bit nauseous but immediately took a pill.

Now, waiting for Tuesday and round two.

I do want to say a few words about the great social media, when it’s used to the good. I have so many, many people, most whom I’ve never met and don’t know personally, wishing me well, cheering me on and supportive with words and deeds.

Now, that the decision has been made, I’ll try not to whine or become a Prima Donna!

My daughter picked out two very nice wigs and I shall order those.

GOTCHA!!

After that little pondering session in my last post, I was still clueless about what might come, running over me like a dump truck.

I was waiting for the doctor to call with results but figured what with the weekend and then a holiday, it might be Tuesday before I would know.

Sunday, early afternoon, I was watching this great show on T.V. when the phone rang. Unsuspecting of anything, only mildly curious who it might be (I canceled caller ID since it’s over $10.00 a mos.), I heard a long-forgotten voice of my former local doctor. He asked pleasantly how I was doing. He’d given up Private Practise to work at the hospital, so I didn’t even know he was still involved but then, he been still listed as my Primary Physician and he got the results. He always works on weekends at the office, clearing things up.

He told me, he as looking at the result and it was NOT good. At this point, my breathing became shallow. He continued to say that the tumor had increased and pressing on that veine and it would cut off my blood supply to legs. Worse, the return of said blood supply would be near impossible and legs would fill with fluidds and that would be disastrous. My CA 125 blood test had risen to 159. Nearly 2.5 times higher than previous. Alright! He now had not only my attention, he had me scared to death. All I could think of was:  I already booked a flight to Seattle and then a flight (with frequent flyer miles) to Germany.

He said I could not go because this tumor was creating big problems and I had new ‘spots’ on my lung and liver. He urged me to have chemo. He said that I would be fine, that a lot was different than last time. That I was in good shape and that my Immune system was great and I could live ‘forever’. (Now there’s a lie 🙂 I said I didn’t want to live forever but a little longer.

When we hung up, I was shaking and my brain was truly fuzzy. I nearly hyperventilated with fear of CHEMO! I called my son who told me he would come.

I cancelled my flights, barely being able to talk. I thought I was in a real dangerous place and my system kicked in with that ‘flight for life’ response. Only, I wanted to run away. (Yea. And then what??)

Cameron arrived and then called Oncologist’s answering service for her to give us a call back.

I called my family and told them I could not come after all. Set off this upsetting motion.

Mom listens to her oncologist, Dr. Melancon

Mom listens to her oncologist, Dr. Melancon

Then everything went very fast. Hardly time to think. Met with the Oncologist Tuesday, early morning. When she came in, the first thing she said, was “Who scared you to death?”

Although things do need to be dealt with, she was NOT as dire as my local doctor made things out to be. I was really angry that I fell for this, in the end. He’s been trying to scare me into chemo for nearly 3 years and now, that’s where we are. But, for these reasons. The tumor on that vein does need to go. We can’t do any other localized treatment because there are a few spots and they need to be gotten at once. I do not want to have to worry about this on and on and on. She promised that this would be ‘gentler’. Funny, that. To use in the same sentence as ‘chemo’. We will do a lower dose of carboplatin and Toxil, same stuff I had last time. Once a week but for longer. I ‘may’ have constipation or diarrhea. I may be nauseated, I may get neuropathy (very painful) but all in all I will be fine! (In what way has chemo changed?? Sounds like the same horrible side effects I had!) Except this timeI have marijuana for the nausea. A few, little pills she had called in are $91.00. Pot is cheaper, better with no side effects. It is a NATURAL plant.

I had finally got the Diverticulosis under control where everything worked well. But, I do have pains in my lower back now, where tumor sits. So, I am now symptomatic. This bitter cup does not pass me by. I can’t be ignoring things just because I want it to be different. Could I have waited another few months? Possibly but then, perhaps would have had more unpleasantness to deal with.

Friends are gathering with their love and support, like a beautiful coat. My son will be

Carrie and Mom reunite for another camino, or path

Carrie and Mom reunite for another camino, or path

here this time to help as well.

But look, I say. How many things I have done those last 3 years, while running away from chemo? Germany, Holland Venice. The following year, Camino de Santiago. Wow! Would have never done this except for cancer. Cameron says, there will be another camino now. The North Route. It’s just as long, perhaps even a little longer. But, I don’t have to do the whole thing.

I am calmer now that the decision is made. At the same time, I started to juice Marijuana leaves. Went to Dispensary and got me some fresh leaves. I washed them and juiced them with a little apple juice to sweeten the bitter taste. Only a couple of ounces. I would have needed 40 days for this treatment. There are lots of great testimonials about this.

I made a wholesome Lentil stew with Kale leaves. Then drank my juice. It was pleasant. The name not so much. This strain is called “Agent Orange’. Good thing I am not superstitious.

So family and friends, we have started a new journey. A detour I had not planned and am so reluctant to go. But, I can’t fight the chemo otherwise it’ll be that much harder to tolerate. Friday morning I will go to the hospital to have to port placed (in my chest.) They put you into a Twilight sleep, as they do with Colonoscopies. Tuesday then, is my first chemo.’

( It occurred to me, that maybe I need to change blog name? camino not chemo only fitted for 3 years.. Now, that I have to have it, what name can I choose?)

Green light for Green Juice

The last few weeks have been mostly uneventful. (Aside from whining silently as everyone, including myself is getting tired of the ‘same ol’ thing.’

There were also some pleasant days. When Rebecca and her friend came to visit. When we celebrated my son’s birthday. When I received a gorgeous bouquet of flowers from my friend Peggie. When friends just dropped by…. because. And, when my granddaughter send loving messages on FB.

Then came the appointment at the Cancer Center. CT scan and CA 125, last Wednesday. I am just a little anxious as I had not had a CT scan in 7 month. Strange pains in the back, in the abdomen. But, I don’t think it would help to get appointment with doc. What would they say? Unless we could look inside, they wouldn’t know. I don’t want drugs, so, I use my stand by heating pad. (I already burned up one and my Beanie bag as well.)

Still wake up, each night out of sound sleep, due to harsh, abdominal pain. I wanted to get off the Ibuprofen but can’t quite manage without any pain med.

Meanwhile, some other exciting things have happen. I was invited to fly to Seattle to help an aquaintance manage his health problems/ weight loss, etc. They are very interested how to do this Lifstyle ‘diet’ I’ve been on. Although I have been somewhat lax with it, due to Diverticulosis. So, soon I’ll be doing just that. It will help me to restart too.

I thought, I would wait until I had the results of theses tests to decide whether I could go to Germany. I have some frequent flyer miles and wanted to know the value. I called UA and got ahold of a very nice, young man who checked and worked on a good deal. He then told me, I had enough miles for a Round trip. I was ecstatic and told him to go ahead and book. Especially, when he told me that the miles would expire in March. Lucky call. So. I decided I would go, no matter what the results were. If they were not good, I’d go because I wouldn’t know when I could go again. If they are good, I’d go anyway. So, I’m going. Running away again.

I am also lucky to have good friends and neighbors who help with house and plants and stuff.

While I am researching all the time for new options or treatments, I came across the newest Marijuana treatment. To juice the leaves. Each day drink some juice. It is purported that this would kill the cancer cells without harming healthy cells. Shrink and or destroy tumors. NO side effects. (Unlike chemo!!) One could also use the fresh leaves in a salad. One does NOT have to smoke it. Many, new options. There are many testimonials reporting this awesome success.

I’ve read in the newspaper that a lady, who is suffering from debilitating Fibromyalgia, tried marijuana pills. It stated, that she was (as are many) reluctant to try this because of the ‘stigma’ but has not had any uniterrupted sleep in years and the pain was getting worse. Well, she came back to the Dispensary the next day, in tears and ever so grateful as she had had her FIRST good night’s sleep.

It’s really unfortunate that Medicare would pay for devastating chemo, approximately $5000.00 EACH to the tune of $30,0000 for the course of treatment but not for marijuana juice that’s much cheaper and harmless.

I am starting next week. Another adventurous decision and becoming my own ‘Guinea Pig’. It sure appeals to me a LOT more than the thought of chemo and /or radiation which would destroy my colon among other vital things.  I am optimistic that it will help. I definitely will let you know. We will have plenty of P.E.T scans and CT scans and blood test to compare.

Any feed back?

Tomorrow…

It’s getting very close and I’m getting very antsy. Hospital called yesterday with pre-op instructions. NO food/drink after midnight, tonight. I’m already worried about food or, the absence of it.

I’ve requested that they add anti-nausea meds into IV so I won’t get so sick upon waking. (I also worry about waking, or not waking.) I remember, some time ago when I saw a medical show where the patient was given anesthesia and they started to cut him open and all the while he was wide awake, felt everything but couldn’t move. I really know that this is silly and I don’t know why my mind conjurs up these oddities.

Friends have been steadily visiting and asking how they could help best. It’s great to have this circle of friends embracing me with a big hug. They will clean house while I’m in the hospital, also shampoo carpet and work in the yard, trimming tree limbs and bushes. (That alone is worth going to the hospital.) Others will prepare soup.

Last night, when I woke with pain and took meds, I was so hoping that this was the very last time I’d feel it. That, in a few days, other than the soreness of the incision, I’m done. My son Cameron is offering for me to come to San Francisco after I’m healed as a Reward. I  am so excited. Also, making plans to go to Austria. It may be cutting it a little short with time. May have to postpone it until spring.

Professor Koebe wrote a nice note to wish me well. Still laments the fact that he can’t personally do this surgery. I am definitely going to go to Wuerzburg to see him again and Marion, his secretary.

My daughter called the other day and we had a nice, long talk. I know that her not being able to come is tough on her as well. Grandkids sending notes of love and support.

So. I’ll meet you all here, in a few days. Gung-ho and ready to roll.

I will put myself into the hands of our Lord.

Full circle and Dr. Two

I drove to Grand Junction myself, the other day for my appointment with Oncologist/GYN/Surgeon. (I had been there just two days prior for a CT scan. )This was, after all, ‘number Two’. This was the one, I had meant to see when Dr. Giggles insisted that I go to Denver, ‘because Dr. D. was ‘number one’.

We all know how that worked out and ended. Wasn’t too impressed by number ‘one’.

So, I was a bit curious how I would find this good doctor? Would she be brusk? Unfriendly? Arrogant? I sat in the treatment room and nurse did the vitals. Bloodpressure up a but it seems to match the surroundings.

After that, I sat there and waited. Nothing so boring as to sit and wait. Not even a magazine in there. My cell phone didn’t work in that little room. I took my checkbook out and tallied the sums. Not very exciting nor fun. Noticed how much I spend on medical bills and holistic stuff. I just heaved a sigh and put it behind me. Light knock on the door and in came Dr. ‘Two”. Nice smile, handshake. Then we discussed the lengthy tirade of my futile visits so far.

She examined me, then told me that she could not tell the source of the pain. There are many choices. But the CT scan was alright. No changes. No new growths, or movement from the old one. THAT is good news.

Here are my options: Try to manage pain ( not an option because it’s not managed.) Or: have a laparoscopy, go in, look and see’ then discuss further steps. (WHAT??? Go in twice? No. No.) third: Make a larger cut, so she can get her hand in (too much information!) to feel around. She said, they really can’t ‘see’ much therefor have to also ‘feel’. She wants to remove the cluster of small lymphnodes. They are no problem at the present but could be. Then, take out that piece they placed there over 10 years ago, for the adhesions to grow onto. (Should have been taken out and exchanged for a newer one, years ago. Maybe that’s the culprit??)

She will then place a new material in the abdominal cavity, the material being  similar to ‘Saran Wrap’ so adhesions can’t form. We will NOT touch the ‘errant lymphnode’ which is too overgrown with veines and blood tissue.

Surgery would take under two hours and I’d have to stay there 2-3 days.

So. Our number TWO doctor has no such hesitations to help me, as did doctor number One in Denver, or my GYN here, or, even worse Dr. Giggles with his arsenal of chemo.

I like her and I absolutely trust her to do her best for me. Finally. Someone to help alleviate this horrid pain. She asked me to think about it and then let her know. I was already pretty sure when I left, that I would do this surgery. She also assured me that we’re not doing chemo until ‘absolutely’ necessary. That was balm to my fearful soul.

I met with Carrie and Laurel, Gracie and a couple of their friends for lunch. Fun to have young, vibrant people around.

When I came home, I called Cameron to discuss these new options. He said they sounded good to him, too. He offered to come out again as well but I can’t ask so much for just a few days. Besides, sometimes we need a woman to do ‘womanly’ things.

Friday morning, I called Angela, her nurse and said I’m ready to set the date for ‘redecoration of the pelvis.’ She laughed and we settled on the 24th, July.

Now, that this is settled, once I have passed the unpleasantness of waking up right after, which is always so bad as the pain hits severely before they can give you anything. I remember this from every other surgery I’ve had but yet, this is not enough to deterr me.

Now, I’m setting up the friend rotation schedule, for after when I’m released. I so wish my daugher could’ve come to help me physically (she helps with the writing of my story with her brother)  but with the children and no money for the trip, it’s not possible. Cameron can’t come this time as he has to move. But, I think it’ll only be for a couple of days. Friends have offered right away to stay the night. Even from far away, like Boulder, my friend Rebecca has offered. Many, many well wishers and so much kindness.

Of course, sneaking into my brain are the thoughts that I usually have before any surgery. That very thought that woke me, early this morning before even the birds were up. I sure hope I will wake up. What if I don’t?? Well, I wouldn’t know about it but the (even remote) possibility makes me sad with missing my children, grand kids and friends already. And then, there’s my little buddy.

I better push all that out of the way and concentrate instead on my trip this fall. I’ve seen some pictures of ‘Meteora’ and ‘Valley of the fog’, in Greece. I really, really would like to go there. But, I speak no Greek, ‘that’s Greek to me,’ ha (even less than Spanish!) So. I better stick with Austria. Just the thought that I could plan and actually go gives me new vigor. A very nice Facebook friend, from Austria, who’s a singer- (You Tube-Peter Martell) wrote the nicest comment. He told me that when he recorded ‘Amazing Grace’ he was thingking of me and praying that I’d find relief soon and asked the Lord to listen. Touched me to tears. Also said, when I come to Austria, he and his lady friend would sure show me around and help me find reasonably priced rooms.

It seems a long time now, since I’ve started this ‘cancer-health-journey, to now. I told my friends how grateful I am for their loving, never wavering support. For listening to my woes and tirades. For coming and helping, no matter how big or little the problem. In this, especially my ‘favorite Mike’. My son, who took a big chunk out of his life and time, to come and help me find treatment. My friends, Monika and Inge, who always take me for tests. Others who bring food, laughter warmth. Strangers, who, after reading the blog have called or written e-mails with suggestions and links to doctors and or Naturopathics. Others, who have become new friends and presented me with a Pedicure. Others again, bring vegetables, soup, cage free eggs etc. Or, bring the dogs when I had a particular low day, to cheer me up.

(I’d written an e-mail to recommended Naturopathic doctor in New York but have never received an answer). Never again heard from that woman Dr. in Boulder. That 15 min phone call cost me $75.00.

So. Next week, I will pack my bag. (They have T.V. computers in the room). I can wear my own PJ’s. Hopefully, this will be my last surgery. I sure would like to have a few years without pain or some other health problem. As long as the cancer behaves, I’m good to go. I  will write after surgery, as soon as I’m able.

Thank you all. Hugs all around.

Oh, I want to mention that it rained yesterday. A true ‘Gully-washer’. Everything looks brigher, greener and grass is finally green and not brown. Birds are singing and the scent of fresh washed air is coming in through the open windows, carried by a light breeze. Great Sunday morning. Thank you GOD.

 

Venus in Transit

It seems that a lot of time has passed since my last entry. Actually, not really. If I start to recount the past days and describe these painful bouts, I will get very bored with myself. I can’t believe that there’s nothing else to talk about than constant pain. But, it is my life right now. Just trying to work the meds to where I can ‘outsmart’ it, is a full time job.

Yesterday morning I managed a 40 minute walk. (Last year, I managed 8-10 hours). I miss, really miss this good feeling and energy I’ve had. I have very poor appetite!! I feel like I’m slipping and can’t get a good hand-hold.

I spend a lot of time in my back yard. Now, that the Medicine Wheel Garden is finished and so lovely, it gives me such pleasure.

This past week, there was all the attention on Venus’ transit. I had brought free newspaper home and started reading. Good things are going to happen to me, I’d read in my horoscope. Venus is in MY sign. It’s always nice to read something nice. I was really very pleasantly surprised when this ‘love’ promise actually started to become reality.

I had befriended a young lady over FB and would share comments, pictures, with Lori A.H. She had sent me a message asking if she could meet me. After a little scheduling back and forth, she came Thursday. With a potted plant in hand and big, lovely smile.

We got along like ‘a house on fire’. She was so complimentary and credited me with lots of wisdom. The time was too short before she had to leave but, there will be other times, I am sure.

Then, Saturday I received a letter from Amber. She is the daughter of an old acquaintance  who’s life I had saved about 28 years ago, when his two gas tanks caught on fire under his pick up. Lonely, empty stretch of highway, on a Sunday afternoon in January and the Superbowl on, no one else traveling.

Her dad and a few family members and Amber were coming through Montrose and wanted to visit. I put up all six people, fed them and next day they left. That was 2 years ago.

She had just found my address. The letter is filled with Thank-you’s. She states that even though the time was so short, I made a profound difference in her life. In part, she writes: Thank you again. You are a special person who really makes a difference. Please know how truly amazing and inspirational you are. Thank you a million times over!

I was totally and wonderfully surprised. To think, whatever I had said and done in these few hours, made such a difference in this young Woman’s life. (I think she is 29).

So, how very accurate this Venus Transition was in my life as well. I felt warm and appreciated, even 2 years later or maybe, because it was 2 years later and she still remembered. So, I am glad that I was kind and hospitable. I have no clue what in particular I’d said. This letter and Lori’s  and Julie’s visit really made my day(s). It buoyed my stale energy. Another new friend (met her through the blog) invited me to have a pedicure, next week.  It’s raining Love and Kindness. Venus in Transit.

Oh. With all of that, I nearly forgot the awful day I’ve had.  For days I smelled something musty. I kept saying to Julie,’ I smell something wet’. She couldn’t really smell anything so I let it go another day. Then, Thursday morning when she left, I thought to check the cellar. I went downstairs, turned on the light, openend the door And … WATER. Lots of it. All over. Immediately I called ‘my favorite Mike’. He came at once and at least shut off the water. All hot water. Hundreds of Gallons. Water heater valve had broken and so it kept running over. He called the Plumber. Luckily, the warranty was still in place. I was overwhelmed with all these tasks plus hurting like the dickens. I called my friend Bonnie, at work, trying not to cry and asked her to come help me for a bit. Which she did. She handled the Insurance company and just to have someone here, had me much calmer. Is it the meds? Is it my age? I seem to have a harder time dealing with sudden mishaps, or changes.

Meanwhile I had yet another appointment with Dr. Michael. He has performed several colonoscopies and my lung surgery, last year. It’s actually on the same date this July 5th, that I will have a colonoscopy. I am sure, my colon is fine. But, ‘just in case’ as the last one was 6 years ago.

Another doc, more tests and CA 125

I can’t believe how unraveled my whole life is becoming. More questions than answers piling up. I have faithfully taken those Chinese Herbs. (They look like little BB’s.) I’m sure that some of the debris from the kidneys got out. It gave me temporary relief and I thought, I nailed it. Until the pain came back with a vengeance. It feels like some little gerbil is biting its way through the abdomen. Really. Although not much faith, I called my OBGYN for an appointment. This was de ja vue of 11 years ago, when I came to his office, crying in pain.

Well, we now know how that ended. This time, I already know that I have cancer, so I just needed help with this pain. He was not encouraging. Would not advice laparoscopy because they may encounter something much worse, i.e. cancer stuff and won’t be able to deal with that kind of surgery. He suggested a colonoscopy. Wow-yay! But, since I’ve not had one in 6 years I said O.K. I am not, at all looking forward to that procedure.

I remembered that I had some dealings with pain two years ago, which had me visit the Emergency room. I got my diary and went back and sure enough I’m describing the very same symptoms, place and severity. They hooked me up to Morphine and I remember saying , ‘Thank GOD for drugs’ as it flowed through the veines and I could feel the relief at once. No diagnosis though. As I was still losing weight at that time, it seemed to disappear after awhile. I wonder, if these is the same scar tissue that I’ve had so much problems with, over the years. I’ve had 2 surgeries to alleviate that pain but it always returns-worse. Research shows, that it’s a chronic disease. To think, I may have to live like this, is not an option. I wouldn’t care if I got ‘just’ another 10 years out of it, I’d go for it.

I will have to call my Oncologist and see what she says. We know, this has nothing to do with the cancer, although my Doc, here, always seems to want to place it there. I’ve had my CA 125 blood test (cancer marker) the other day and doc called me yesterday to give me the result. It went up. He said to start thinking about oral chemo. He thinks this is the cancer pushing on something or has grown to where it gets in the way. I am going to be contrary again, and say no, these are adhesions. My oncologist says: This is not the cancer. Radiologist and her went over that CT scan with a fine tooth-comb and nothing has changed. (Except numbers are a bit up. But we won’t worry until numbers go up 35-45 points.) They went up only 6 points.

I was not surprised as my Immune system is fighting this inflammation and taking these meds will always change numbers. I can feel myself slipping. I wonder where all this great energy went? I am uninspired about cooking. I feel no great need to eat. (That worries me a bit). I am not motivated because I am in pain so much that nothing else seems to matter. I just want to reach in there and rip it out. I tell myself to ‘buck up’, to get over it, to stop being a wimp’. But time is starting to wear me down. I can’t concentrate on helping myself against the cancer, as I have to get my energies toward this  issue now. If it isn’t one damn thing, it’s another. I am starting to feel overwhelmed, again. Since I have not been able to walk much, I’ve gained weight. That has to go so now I am back on track. But, my friends are not making it easy. They invite me, either out or to their home and surprise me with wonderful food, but not the kind I’m allowed. Then they say, oh, go ahead, it won’t hurt you this once! Yes, it does. And it’s not just once. I’m struggeling with low appetite and so they want to tempt me, so I’ll eat. Loving gestures but I need to get back into my lifestyle.

My friend Julie called and she will come on June 2nd to  help me for a week. Help clean, cook and go walking with me. I wish my family lived closer.

My BFF Irene, send a birthday card with money and although I told her NOT to, she ignored me and did anyway. I’ll use it to have acupuncture since that is helping a lot. (And, maybe a pedicure because my feet hurt.) All these extra treatments and herbs and supplements are costing a mint. Not something that Medicare pays but yet vital to me, in fighting this fight.

I still try to envision my trip to Austria, this fall. I can’t seem to see myself there, yet.

I’ve been walking again because I can’t just sit here. I need to move. I’m taking Ibuprofen before I start and hope I can finish.

Tomorrow is my 68th birthday. I look at that number and it looks so strange. I don’t feel ‘that old’. On the other hand, two years ago when I didn’t know where this journey would take me and the ‘C’ loomed huge and scary, I am sure glad to see 68. If I just get to feel better, I don’t want anything else. Ever. I don’t care about a new house, or furniture or keeping up with certain people. I don’t care about sleek cars and who’s got more. I just want to feel  better. In that is a richness beyond compare.

I am trying to get my ‘umph’ back.

 

Constantly Questioning What We Think We Know

Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah.  However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions.  In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians).  So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases.  I view the results of that kind of discussion more favorably.  While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer? 

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer.  And that another doctor had deemed that nonsense, saying it had to be ovarian cancer.  Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.”  The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor?  Ovarian?

“I have no doubt,” Dr. Denver said, emphatically.  The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon.  He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate.  (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion.  If this was a high-grade cancer, she likely would have died of it by now.  In that sense she’s fortunate.  But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.”  (I now see ambiguity in that “it”  — to see if what shrinks down?  The cancer generally, or the difficult lymph node?  Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?  

She didn’t have the reports in front of her (note to doc:  buy a tablet), she said, but said mucinous was the histology of her ovarian cancer.  “These tumors aren’t known for being chemo-responsive tumors,” she said.  I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous?  I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?”  I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific).  By “everything,” did she mean everything that looked problematic? That was my understanding.  I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable.  This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much.  It will be all scarred in, it will grow back, and any attempt to resect will be even harder.”  As I did many times on the call, I restated this to her in different words to ensure I had understood it.  She went on:  “When you operate and disturb the natural tissue plain, you create more scarring.  If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future?  And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals.  It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science.  The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning.  Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission.  It can get aggressive and resistant to treatment.  Almost every patient on IPT will go into remission, he said.  They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said.  He said it was very good that Mom felt well.  If she feels well with no symptoms, he said, she’ll do better with IPT.  “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”.  She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies?  I’d been unable to find any original studies on the web, and only scant reference to any studies.  I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies.  The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true.  They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United).  There is no money to be made in therapies that aren’t conducive to being patented.  If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices.  In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies.  Doing studies properly costs a lot of money.  IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals.  And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy.  Anything else is just investigational.  She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said.  “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed.  That she hadn’t even heard of it proved that much.  It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said.  She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”:  the systemic assault of chemotherapy was the solution to such a case.

Biopsy

What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay.  There are a variety of them in use; some are good and some are not.  The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said.  A certain amount of tissue.  And she was doubtful you could do that safely.  She concluded:  “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.”  This is the kind of language I look for.  It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us.  We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.

Paging Dr. Chutzpah

I came to Colorado near the end of February because my mother’s Denver surgeon had

What I brought from Oregon

What I brought from Oregon

said, unequivocally, that surgery on the last of Mom’s tumors would take place “at the end of February or in early March.”  Once I was already in Colorado, the doctor, whom Mom had told I would be flying in for the scheduled surgery, told us removal of the entire tumor would be risky, and was not viable.

Still, I’m glad I am here now to sort out this curious breed of people they call doctors, and to help Mom reason her way through important medical decisions.  I am finding that being a patient-advocate means being a very patient advocate.  Here I am, calling the proton therapy center in Loma Linda, California:

Me:  What do you mean you can’t take people with Stage IV cancer?  Why not?

Bureaucrat (not her actual name or title):  We only do the proton therapy on Stage I and II.

Me:  She’s not symptomatic.  Another proton therapy center thought that made a difference.  No?

Burcrat:  We only do I and II.

Me:  So is there some distinction, as regards proton therapy, that makes Stage I and II different from Stage IV without symptoms?  Or could it be a distinction without a difference?

Burcrat:  Stage IV is the stage we don’t do proton therapy on.

Me (trying another tack):  Can you tell me why that is?

Burcrat:  That’s our policy.

Kafka Was Lucky

The works of Kafka became famous for situations that make more sense than talking to someone who doesn’t know why her organization does what it does.  If only the woman had uttered one of my favorite lines from The Trial, in which two mysterious men materialize in Joseph K.’s apartment and are unresponsive to his queries, the day would have been at least aesthetically perfect.  In The Trial, Joseph K. eventually tries to leave his apartment, but the men tell him:  “You can’t go out, you are arrested.”

“So it seems,” K. replies. “But for what?”

“We are not authorized to tell you that,” he is told.  “Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course.”  And then the hilarious line:  “I am exceeding my instructions in speaking freely to you like this.”

K. tells himself this must all be a practical joke, or at least a mistake, for he lives in “a country with a legal constitution.”  But no.  K. is now in the surreal, irrational world that would come to be called Kafkaesque.

And I am in the world of American medicine, the bloated, inefficient thing we find ourselves stuck with in 2012.  I’m an advocate for my mother in a different kind of trial.  And one of the lesser trials is of our patience.

Witness our experience with the Denver-based gynecological surgeon and oncologist we met above.  We’ve taken to calling her Dr. Chutzpah.

Dr. Chutzpah:  Part I

Nearly two years ago, Dr. Chutzpah told my mother that she, Dr. Chutzpah, would not perform surgery on the tumor now in question unless my mother underwent chemotherapy afterward.  (Yes, afterward.  As if she could legally bind my mother’s post-surgery conduct).  My mother told the doctor that she couldn’t go through another round of chemotherapy.  The doctor said she would not operate without chemotherapy.

Last Monday, Dr. Chutzpah told us that the tumor is now too wound up with veins from the aorta to allow for a safe operation.  She also said that Mom has a mucinous tumor, and that such tumors are usually not responsive to chemotherapy.

Dr. Chutzpah to a White Paging Telephone, Please

So Mom and I unpacked that as best we could.

In order to perform critical surgery, two years ago, that could have prevented the further growth of the tumor, had she required a likely waste of time, my mother’s scarce money, your taxpayer money (Medicare), and, not least, a great deal of statistically unnecessary suffering?

So what should we do now? we asked, two years later.

Dr. Chutzpah suggested that Mom should go through chemotherapy, just in case it worked.

Mom and I were perplexed.  Hadn’t she just said this tumor was unlikely to respond to chemotherapy?

Dr. Chutzpah: Part II

In mid-January, Dr. Chutzpah told Mom to get another $8000 PET scan.  Mom had just had a PET scan in mid-November.

Dr. Chutzpah then had Mom and her friends drive over the Continental Divide, in January, to Denver, for a pre-op procedure – and then sent her home, saying the hospital in Grand Junction had failed to send the critically necessary PET scan.  Once Mom had arrived back home $400 lighter, Dr. Chutzpah’s office located the PET scan.  It had been in her office all along.

But then Dr. Chutzpah said the $8000 PET scan that she had ordered, and which was necessary to the $400, two-day trip to Denver, didn’t show the right information.  She called it “blurry”.  Then Dr. Chutzpah did an interesting thing.  She told my mother to get a CAT scan.

Now, you would think that if a PET scan had been the best choice all along, Dr. Chutzpah would have ordered another one.  Or, if PET scans had a tendency to be “blurry” or to be unlikely to show the object in question, Dr. Chutzpah would have known that and ordered the CAT scan the first time around.

So far, two PET scans and a CAT scan in 60 days.  Who absorbs this cost?  We do.

In any event, Mom, her immune system struggling with the fearful thoughts this confusing process was causing her, immediately went to St. Mary’s Hospital in Grand Junction and underwent a $4000 CAT scan (thank you, readers!).  The hospital again sent the doctor the CD.  Then we heard nothing for several weeks.  How to explain the time-sensitivity that says a November PET scan may not be current enough — but surgery can wait for several weeks after the third scan?  Maybe there is an explanation, but if Mom was given one, she didn’t realize it.

Mom’s nerves were fraying.  She wasn’t sleeping well.

Finally, Dr. Chutzpah left a message last Saturday saying she’d call Mom on Sunday.  On the appointed day, Mom chained herself to her phone and did not go out all day.  There was no call.

Late on Monday, Dr. Chutzpah reached Mom, said she’d called both of us earlier in the day (a curious fib in the age of missed-call lists), and said she hadn’t called on Sunday because, she said, “I thought you might be in church.”

When Mom (who does not go to church) got off the phone, she was incredulous.  “Did she think I’d be in church all day?”

This, too, affected Mom’s sense of trust, and well-being.

Dr. Chutzpah:  Part III — Primum non nocere, or First, do no harm

I watch these things with the eye of a consultant, a coach, a businessperson.  (And a comic, sadly).  I have been passionate about best practices and efficient systems since before I knew their names.  I’ve devised the best ways of doing things, used them, recommended them, helped others build them for my entire career.  And I too am incredulous — at the avoidable waste, inefficiency, and poor service I see in medicine.

Dr. Chutzpah, for example, does not have in place the fundamental operating policies a competently-run business has in place to make a real effort to respect clients’ time, money, and emotional energy (which is, or may as well be, the immune system).  Leaving aside the possibly wasteful scans, here are just a few policies Dr. Chutzpah could implement as easily as creating checklists for them:

  • Waste no patient money, I.  Establish a procedure to ensure that a patient does not even cross town, much less the state, unless the doctor possesses all the tools and information the appointment requires, including a PET scan.
  • Waste no patient money, II. Establish a procedure to ensure that a patient does not expend the time and money to come to an appointment unless all tools are in working order, such as clear PET scans.
  • Take responsibility. If doctor’s office does cause a patient to foreseeably waste time and money, the patient’s overall bill should be reduced to compensate for the increased expense caused by office’s negligence.
  • Pay attention to foreseeable consequences. If you know that a patient is making plans based on what you say, pay attention to what you say.  For example, if you haven’t yet reviewed the CAT scan that would alone tell you if surgery was or was not possible, do not set a date for surgery that others will rely on at their expense.
  • Do not substitute authority for evidence. When you do recommend courses of action, explain why.  Cite a scientific basis for a recommendation.  For example, if chemotherapy doesn’t “usually” work for a particular situation, give the patient, at a minimum, statistics for your interpretation of “usually.”  Better yet, provide the actual studies you are referring to.  Otherwise we have to wonder how cutting-edge your knowledge is, how good your memory, and how well you interpret data.  And because you’re a human being and I’ve read the research on medical errors when doctors don’t implement good systems, I don’t want to rely on you alone.
  • Have the courage to talk about ideas you disfavor. Please address those actions you do not recommend, even if you think they are absurdly alternative.  Because we are going to find out about them, and we will want to know the scientific bases for your dismissal of them.  We’re probably going to ask you anyway; why not be thorough and streamline things in advance?  (Another doctor inspired this addition:  When you are asked about alternative therapies, discuss them rationally and unemotionally, rather than with anger and contempt.  The latter is about your ego.  The former is about your patient).
  • Better yet, write it all down.  It is madness to expect a terrified person to hold in her head everything you tell her, or to take flawless notes.  The mind screams:  What are you thinking?

Dr. Chutzpah’s Last Ride?

Because no doctor had clearly laid out the options for my mother, nor written anything down for her, we were left with a raft of questions.  I called Dr. Chutzpah’s office and left a voice mail saying we had questions.  I asked for her email address.  I said that we would not rent, sell, or barter the email address, but if the doctor was concerned about getting inundated with emails, I could put the questions on a web page and they could view them there.

I mean, right?

Dr. Chutzpah’s nurse called, several days later, to say that I should leave the questions on their answering machine.  Twice she stressed that I should not be worried about leaving “a long message”.  In fact, I was quite brief.  I read off these questions:

  1. What is the primary cancer here?  We have heard ovarian and lung.
  2. How was the stage defined?  What does it mean to be in Stage IV without symptoms?  Is such a Stage IV not qualitatively or quantitatively different from more symptomatic Stage IVs?
  3. Is this tumor metastatic (spreading) from the primary?
  4. Why was chemo required 2 years ago when she’s saying now that Mom’s type of cancer typically doesn’t respond to chemo?
  5. Why not do a chemo compatibility test?
  6. What are your thoughts on partial removal of the tumor first?
  7. Can a biopsy be done without surgery, or in this case is a biopsy about the same procedure as surgery?  If the latter, does it not make sense to do the surgery in order to learn what kind of mass it is?

The next day, the nurse called us back.

“Dr. Chutzpah,” she said, “said that if you have so many questions you will need to make an appointment to see her.”

No, Seriously

“I’m disappointed to hear that,” I told the nurse, “because I think we shouldn’t have that many questions.  Their answers should have been included in a well-thought-out presentation.  And if there’s not going to be any medical exam, it doesn’t make any sense to travel all that way for a conversation that can be done by phone.  Does it?”

Eliminating the only remaining reasonable objection, I added, “We’d be happy to pay her for her time on the phone, but it makes no sense to drive four or more hours to Denver when there won’t even be a physical examination.”

“I will communicate your views to Dr. Chutzpah,” the nurse said.

 

Eleventh hour cancellation and more questions..

Well. Knock me over with a feather! After waiting all day, Sunday for Dr.D. to call and being anxious about it, it never happened. Another beautiful day wasted and gone.

Monday morning I called Denver and left messages with Dr. D’s Onc nurse and the Co-ordinator. Another beautiful day was promised and I had enough of being cooped up. As soon as Cameron was finished with his coaching call, we got ready to drive to Ouray and have lunch. Mosey around that pretty, little town. I already had my coat on, when my cell rang. Dr. D. herself. She started out by saying why she had not called Sunday. She assumed I was in church. (Even if I would’ve been, I doubt it would be an all day service.) Anyway, I digress.

She then launched right into why surgery was not an option at this time. Seems that the lymphnode has wrapped itself in and around the vene (the aorta and therefor would be difficult and risky to remove.) I held the phone so that Cameron could hear her as well. She suggested ‘ a few chemo sessions’ first, to shrink tumor and then do surgery.

Although, this type of cancer may not respond well to chemo?? She said that it was a good thing, that the tumor showed so little growth in all this time. When I pointed out that my CA 125 numbers had gone down as well, she brushed that off as lab differentials, or something else. Funny, that! When these points had gone UP, my local doc and Ocologist, Dr. Giggles, both remarked how urgent it is that I see Dr. D. ‘You must do something soon’, they stated.  But, when those same numbers go down, they’re dismissed. Of course, I never mentioned that I am taking these supplements.

I used many of those idle Sunday hours to research. What I found was this:

The Promise of Proton-Beam Therapy -Us News and World Report

I had filled out their online info sharing form and at one point they’d call me. Free consultation.

We drove to Ouray, mainly in silence. The thoughts were bumping around in my brain but didn’t find landing a spot. We parked and went up the street to find a place for lunch. The early March sun, in this high altitude was wonderfully hot. Felt great behind my cloesd eyes, to soak it in. And the fresh mountain air. Since it is still off-season, there was not much going on. A few stores trying to get rid of long kept merchandise, with offers of 20-50% 0ff. In one window, a display of rings made of semi-precious stones, caught my eye. Not too much for $75.00 but… I don’t need more stuff. There would not be much joy in wearing this bauble with tumors’ Damocles sword hanging over me.

The  Vegetarian Bistro, that I’d been to before was closed. So, to Brian’s Pub we went. Semi Irish decor. The minute I went in, the cheap fry-oil smell was so strong, it made me want to get back out and breath. We ordered a Black Bean Burger with red pepper pieces and caramelized onions. I chose potato salad and Cameron had sweet potato fries.  I ate half the burger (which was previously frozen and luke warm) left the bun alone. Cameron ate the burger but not the fries. By that time I was nearly nauseous from that hot-oil-grease-smell. Since I have not cooked with ‘industrial’ oils/fats, this is an assault on my taste buds and senses. (See my recipe entry about Oil Change in the Kitchen.)

We walked to the book store and I purchased two books. My sleeping pills as I read in bed, every night. Cameron expected another work call, so we decided to drive home and pick another day for going to Box Canyon Falls.

My little buddy came to have help with weekly homework. In between trying to make 10 word sentences with him and preparing dinner, the phone rang. It was the Protone Docotor.

He asked me some questions about first diagnosis and recurrence. I repeated the diffilculty of tumor place, etc. He said, oh, Inge, I can get this.’ Told me of the many success’ they’ve had with inherently worse tumors and cancers than mine. One of the worst ones he’s ever seen was a CA 125 (Ovarian cancer) with a 12,000 number! (Mine is 52). Then we got to the REAL point. Cost. One treatment would be $1200.00-1700.00 and about 8 treatments would be required. I quickly figure this to be around $10000.00 Of course , added cost the flight and stay at ? hotel? I thanked him for his time. He gave me his private phone number, encouraged me to call 24/7. No Medicare help on that one either.

Meanwhile, I had received my reply from Professor Koebe. Quick as always to reply. Never have to wait to hear from him. He’s adamant that no matter how little could be removed, to do so. Not to mess with Cyberknife and doesn’t like the idea to start out with chemo. He suggested a vene graft. I would imagine, he means to clamp off either side of the veine area, then cut it all out and graft a piece in between to make the bridge.

When Dr. D. heard that, she immediately negated that idea. ‘People can die doing this and it’s not standard practise of care. Then, post care would be near impossible.

What to do? What to do? Where to turn? Who has the best, workable treatment? Instead of final clarity, I’ve got more, hard questions.  Where would I get this sum for Protone, even if I would want to try? We wasted nearly 3 months with back and forth. We wasted $16000.00 of Medicare’s money (hello, Dr. L) for 2 useless PET plus nearly $4000 more for CT. Already so much without any real help for me. (And, of course I have to pay 20% of all that.) The only one, working for free is Professor, Dr. Koebe. He gets a whole heart and ‘sack full’ of Thanks.

 

 

Prayers, Angels and Candles…

As I was waiting these many weeks for a surgery date, many people were waiting with me. In various corners of the world. There’s my family (what’s left of it) in Germany and Switzerland. With e-mails, Skyping and phone, they kept in touch. There are my FB friends who inquire daily. Everyone wishes me well, supportive with words, deeds and prayers. There’s my good friend, Ingrid in Csakany, Hungary. The rest sprinkled across the United States.

My sister and niece, drove to Heroldsbach, Germany. A place in the countryside purported to have had a sighting of St. Mary in 1949-1952 by several children. The spot, where St. Mary was said to have hovered, had supposedly brought forth a spring. She told the children that this would be sacred water. To heal. This sighting miracle was not supported by Rome. But, this did not keep people from coming to this small village, by foot, by car and later, by bus from all over Europe. I had never heard of it, until about ten or so years ago. I was in Germany when my sister asked if I wanted to come with them. I was curious and agreed.

The place is beautiful. Set on a large, sloping meadow, fenced in with a discreet, unobtrusive, wooden fence and a well trimmed hedge. There are the 14 stages of the cross with altars placed in between. There are flowers everywhere.  There are also a lot of wooden crosses, in various sizes and weights, for serious pilgrims to carry, depending on what their self-imposed penance may be. In the middle is a small pavilion with several steps going down on 2 sides to the origin of the spring. You can see the small body of water underneath a polished, ornate brass grill.

I was having these undiagnosed, abdominal pains at that time and I placed my hand over this spring and said a silent, little prayer. A little further is a Glass Chapel with the statue of Mary inside. In front of her, huge profusion of flowers. Mostly roses.  A large book, on a stand is right by the entrance, where people can write their concerns for prayer intervention, into the book. All that St. Mary required for her help is that everyone would then give written notice of any healing they received. There are plaques all over the place, running up to the ceiling, all 4 walls. Mostly with grateful, short sentences. Mary has helped. Or, with heartfelt gratitude for our miracle.

Since we finally had a date for the surgery, my sister had called with the promise of driving to Heroldsbach and placing my name into the big book. As well as spending 5 Euros for a candle to be lit on the day of surgery while the good nuns would pray for a successful outcome. I was touched.

Then Julio wrote a very nice e-mail, that he too, would go to the cathedral in Bilbao, Spain, on the day of surgery to light a candle on my behalf.

My friend Carla and her husband pray for me daily. The cashier at the Natural Market also offers prayers. As do many friends and acquaintances.  I am sent Angels by e-mail, promising to keep watch over me. I should be well covered in Prayer Insurance.

BUT. There’s a bit more drama. Yesterday, I had just finished a nice, surprise call from Julio and Marianne with their happy news that they are booking their flight to the U.S. in mid April.  First they’ll fly to New York, where they will spend a few days, then take the train to come West, ending in Grand Junction. We made great plans and I told them we would have a fiesta with friends to welcome them to Colorado.

Cameron was getting ready to go skiing in Powderhorn, which had just received about 2 feet of new snow. Sort of a last hurrah before the medical route with me.

I was scurrying around, letting my friends know that we have a pre-op date and went on last-minute errands.

When I came home, the light was blinking on the answering machine. Without much of any thought, I pressed the button. It was Dr. D. from Denver. She said that she and the Oncologist/Surgeon were looking at the latest CT scan. (She thanked me for getting it done as it gave them a different view and perspective of this lymph node that had gone beserk.) Then, continuing, she said that they had grave concerns as the tumor had intertwined with the veins in such a way that there would be great risks in removal. She would call me this morning to discuss this in person.

Needless to say I was stunned. I felt like I had been running and someone put a stick out to knock me off my balance in mid run. I just stood there and couldn’t even manage to produce a thought. The next thing, CRAP. What NOW? If there are grave concerns, should I even go ahead? Of course, I don’t know the detail of these concerns but I don’t like the sound of that AT ALL!!  Next thought: Well. Maybe back to Cyberknife. Also. Write the Professor in Germany, ask him if he had received copy of CT scan and what did he think?

Then. Must do more research. Maybe alternate is my other only option? How do I get this damn blood-sucker out??? De ja vu!  I was in this spot months ago when I agonized over the decision to even have surgery. It took such great, inner force to wrap my brain around being cut (“fileted”). Now, I have to again entertain different course of action? Should I have chemo first? To shrink this tumor and then surgery? Should I check into Proton Therapy? How is this different from Cyberknife? There’s one in Loma Linda, they’ve done this procedure longer than anyone else. As I understand it, the machine is 3 stories tall and cost EIGHT Million dollars. But is painfree. I filled out their online intake form. Someone will call Monday and explain it to me.

I’ve also drafted an e-mail to Cyberknife Oncologist. There are still all these alternate centers. GEEEZ! Nothing easy about me and my stuff. More prayers. More angels and more candles are needed.

Bye, New York- Hello, Denver

I am a lucky person.

Met my grandson in Denver and we flew to New York together. Dylan grew so tall in the four years I had not seen him, that I did not recognize him and had to call my daughter, who called him, to find him. My daughter with grandson Kaleb came later. What a most generous present from my son, to have all of us together for the Holy days.

We stayed at the home of Cameron’s buddy from Harvard days. They generously moved to couches in the Living room, to make room for 4 more people. And, we did the town. World Trade Center with the perpetual pools. Somber mood and sadness, running fingers over the carved names of so many people.

Madame Tusseau’s wax museum.

Ripley’s Believe it or not. Carriage ride around Central Park. Fifth Avenue with Christmas splendor deco. Ferry ride and Statue of Liberty. A special treat, going to the movie in Greewich Village, ‘The Way’. Cried some just for the recognition of what we had done and places we’d been.

China town, twice and good Vegan food. I’ve just really loved every minute of it and we walked 4-5 hours each time. My 8 year old grandson was just fascinated with everything and chattered, asked, talked. He also walked every bit without complaining.

But, all good things must come to an end and so on my last day I caught a cold and brought it home.

Bills, lovely christmas cards and a few presents from friends were here. Also, a call from Denver University Oncology Dept. I suppose that my reluctance to do chemo had resonated with someone as I have two appointments. One with Alternate Doctor and one with Surgeon/Chemo Doctor. I also have been offered a ride and Laurel said she would take off work, if she had to, to take me. Others, living in Denver offered their homes.

So, on January 11th we shall leave and head over the mountains, once more.

I’ve come to a point where I will do whatever is necessary to make this cancer history. I will also use ‘meditation and visualisation’ techniques to help myself and not keep predicting that I would get so sick. Mind over matter.

I’ve received the nicest note from German Professor-Dr. Koebe, (Hans-Guenter) with good wishes, encouragement and general up lifting. I wonder whether he would realize how much these notes help me? The same for his secretary, Marion. These are people I’d only met twice and I know he’s a very, very busy man and yet, he takes time out to pen a few words because he’s kind.

I really can’t help but compare Dr. ‘Giggles’ to him. And, the former falls way short. Professor Koebe tells me not to worry about ‘stuff’ and concentrate on Austria/Tirol trip in fall. To look forward eating potatoe balls and ‘Palat Schinken’ (a really good speciality) as this helps more than any medicine. His good thoughts and wishes will accompany me and to keep my fine spirit. Maybe he’ll even read this and knows that I am really grateful.

My son is in holding pattern, ready to come on a moments notice. My daughter is helping with love and support. She felt sad that she can’t be here and help as well but there are children, school, etc.

Thank you, my wonderful family and special friends. My little buddy, who always lights up a room.

Happy New Year.

Musings

As I am waiting on word and schedules from Denver coordinator, I am in a fog-like state of limbo. I am still researching and still holding out some hope.

Cameron came, the other day, driving his big, red scout across the many miles from Bend, OR., to Montrose. He had brought odds and ends from his former life including his big, brown leather chair/office. It now squats in the living room as a silent reminder of his future presence and changes of things to come. His willingness, kindness to put his future and plans on hold is an amazing gift. Also not lost on all friends who will be involved with  support and with chemo care. (At the same time, I am researching different chemo availability.) Now, he is en route to New York as we will spend Christmas together with my daughter and grand children, all put in place before these changes. I am very much looking forward to a ‘last fling’ before surgery/chemo.

We definitely need someone to help cook.

As I reflect on some of the parallels of last cancer journey to this one, I see many changes in myself. Last time I didn’t know diddly. Although being informed is not a doctor’s dream of a compliant patient. Now we can challenge and argue and ask and suggest, (for all the good it does.)

I’ve been corresponding with a friend from my courthouse days. (Bailiff that I was and loved it immensely). She’s going through cancer as I write. After my dis-enchantment with this oncologist, who in the last 20 min of our meeting talked solely to my friend, Monika and ignored me completely, an attempt of reversed psychology? Once home again and when the smell of the place had dissipated, the more I thought about his manner and behavior toward me, the less I cared for him. This is where my friend comes in as her experience was very similar to mine with same doc.

She is very happy and well cared for by Oncologist in Grand Junction. I shall call and ask to be accepted there as well. Tired, disppointed of these two, here.

One of the things I’d suggested to my friend was to have a visible goal to concentrate on and to look forward. This helps immensely on stronger brain activity, over powering negativity.

When I had cancer 10 yrs ago, I had taped a fold out from a magazine, showing gorgeous pictures of Tuscany, to my entertainment center. When the time was rough from chemo, in between vomiting and general misery, I would look at the pictures and mentally climb the stairs to the tower. There were 52 of them. I would imagine, walking through the colorful market and hear the cries of the vendors, offering their wares.

Three years later, I had the good fortune to go to Germany with my BFF Irene and my son. My cousin, generously loaned us her Lincoln Town car to use. We drove to Switzerland to visit my brother and sister-in-law. He was still Chef owner of this his little Chalet Hotel, Rubschen. We had 3 mavelous days there with the best food. He’s such a gourmet genius.

On we went through Italy. Staying at wondrous places, seeing beautiful, old towns, villages and country side. We came to Lucca (birthplace of Giuseppe Verdi.) The big car could not be driven through the small streets and we parked it outside the city walls. On we walked on cobble stone, narrow roads to the town square. And, there it was… the tower I had seen so many times in a much smaller version. I nearly fell to my knees with the joy of actually being there. Of being alive to see it. The gratefulness I felt was overwhelming. I ran over to see the steps and yes, there were 52 of them. Florence was anticlimactic to Lucca, for me.

Now, once again, I am searching and selecting a goal of a place to tape up, to strive toward.

A few years ago, I was in las Vegas visiting my BFF and we went out on the town. One place had a small, colorful tent with a ‘gypsy’ woman offering to read our future. Full of vim and vinegar the both of us laughed and said ‘oh, why not?’ I take these predictions with a grain of salt. But, a few came true. One thing she said, was that I would live to be 93, after a health challenge. I remembered that, the other day and so I wrote it on a large piece of paper and taped it to my kitchen wall. A visual reminder of what could be possible. In case you shake your head, I will hasten to tell you that I choose to believe this prediction in place of a more dire one a doctor told me, ten years ago. He’d said, that I would only have a 60+ percent chance of survival. Even though, for most cancers, this is a good number, I, who didn’t know diddly at the time, said to him, you don’t even know me. If I turn this number around, it becomes 90+ percent.

Just a matter of engaging different thoughts to take an entirely different course. It’s a choice. YOU can tink yourself better or you can think yorself into a dark place. I want a sunny spot for my future and, have some more moments of joyful recognition when I come upon a chosen place.

‘Gotcha’.

Looking at the title of the blog is almost mockery. My lofty illusions. My brave attempt to keep my body safe from harm. Yesterday, I folded. I aquisced. I capitulated. I gave up.

After more research for more natural treatments and found only slammed doors bolted with large money locks, I agreed to see local cancer center oncologist. Came highly recommended by my Dr.

A little before the appointed time, I arrived and my friend Monika, met me there (for support.) When they built this new Cancer Center, I used to drive by on my way to visit a friend. They had a huge thermometer looking board where they tracked money collected to finish this project. I remember thinking, I will NEVER go in there. Funny, isn’t it?

The appointment was for 11:30 A.M. I had to wait one hour. I found that to be rude and of course by that time, the place and its meaning had done their toll on my blood pressure. The nurse took my bloodpressure and fever indicator and pulse. Climbing up like my cancer marker. I wasn’t sure why I needed all that just to get information. But, … rules, you know.

Finally Dr.K. came in with a young lady (I imagine to observe how to handle a stubborn patient who clings to alternate medicine.

He took apart the treatmend possibility of Cyberknife. Too risky and not thorough enough to remove the ‘Squatter’ lymphnode, now a large blob. Only surgery will do this and also look into surrounding area for possible, espcaped smaller, cancerous culprits.

He took away Metronomic chemo, saying this is only for colon cancer. He took away holistic clincis as quackery. He said they used to try the hyperthermo treatment, where they removed the blood ‘to boil out’ the cancer but more died. So, they gave it up. ( My doc had informed him very well of what my ideas had been.)

He was, One of Those.

He alluded, since I’ve waited so long, maybe even Dr. D. (whom I ran away from 19 mos ago) couldn’t remove the tumor by means of serious surgery. That, perhaps radiation was the only way left. This intricate surgery can not be done even in Grand Junction. I must go to Denver and Dr. D. is the best. He said, I needed the BEST.

I’d told him, in the beginning of our talk, about the lifestyle change and its first, promising success. He said that, You don’t do away with cancer just by a diet!’  giving a dismissive wave with his hand. I replied, with all due respect, that indeed I had removed one tumor and even the ‘bad’ one had retreated a bit  and no one was going to take that away. His expression was mildly condescending and I could see the words “Gotcha’ imprinted on his forehead.

I  swallowed the bile that threatened to rise and I added, that even by waiting this long, it was perhaps to get ready for this fight as I am in the best shape I’d been in a long time. I imagined myself standing up and motion to pick up a mantle and say “I am the Warrior Queen,  You may get me now but I will determine the rest.

They will send my medical records to Denver and in a few days I will know the date of my consultation with Dr. D. I wonder, if she’ll say, what took you so long? Or, I knew you’d be back. (Tail between my legs.) Right now, I’m just concentrating on breathing, in-out. So as not allow fear to rule. I don’t want to ponder the particulars of this ‘intricate’ surgery and all the things that ‘could’ go wrong. The ‘could’ word, with which they scared me into submission.

What did I do after this meeting? I went to the Organic food store and bought some more ‘Dessicated raw liver’. Then, I went shopping to buy a few things, luckily on Sale, for my trip to New York. I will do what I see fit as far as my food-lifestyle and supplements are comcerned. Maybe, after chemo, even go to a nice Wellness place, to remove the toxins and poision out of my body. I am going to have a Wellness Sale. (Anyone want a diamond wedding set? A men’s Turquoise silver bracelett? An antique painting with a scene from Russia, in Winter, with a Daka lighted windows?

Friends are gathering, once again, to help with loving support. To stand watch outside OP to pull me through with their Love. My daughter, sending up her own wishes in prayer and support. My son, prepared to come at a moments notice, to mop up vomit.

I will not dismiss God’s Grace in all of this. That, even though He did not accept my offer at the cross, that He’s given me all these months, to experience, to enjoy these marvelous gifts of travel and The Camino.  That I am in the best physical health, otherwise. That was his generous gift to me. I just didn’t see it right away because I was so focused on the THINGY being gone.

I have my moments. Stark fear and shaking terror. I remember. I remember. I think, even Mother Teresa had her moments. Can’t be Pollyana 24/7. Must be allowed to deal with disappointment and change of venue.

Fifty reasons..

Sunday started out rather nice. I had found a German channel on T.V. that played snappy music. I cleaned house to that and gleefully did the polka and waltz while dusting and waxing. When I was done I watched a beautifully done fairytale.

A friend came by and we had coffee and just baked Gingerbread Muffins, which were divine. After she left, the phone rang and it was my Doc. After not hearing for nearly 2 weeks it startled me. So. He expressed his great concern and launched into a thorough explanation of what I should do and why. (I think I covered that in a recent post). The risks were covered as well. Surgery would not be an easy one and as previously stated, the lower bowls are in the way! Once the cancerous lymphnode was removed, clips would be used to mark the spot for later radiation. And then, for good measure the dreaded, long avoided, running away to do the camino, CHEMO! There it is. I can hardly stand to look at the word.

Then I fell apart. Just howled with the memory of pain and crap and that I would have to do it again. I could barely get my breath. If they slipped, horrible things could happen. That was a bad night and a very long one. Friends would say, why didn’t you call me? I’m open 24/7. I said, well I could not have talked.  Dawn took a long time coming. This long time… the blue hours. I have to catch my emotional equilibrium again. Spirit, don’t leave me now. Strength and faith— where are you??? Someone else said I can imagine how you feel. NO. You. Don’t. I was just a quivering mass inside, scared out of my wits. I was caught. Just like an animal in a net.

I feel my control is slipping away. I have to bow to their treatment as the others are now too ureachable. Moonwater.  I said to him, wow, now I have to go to Dr. D. with my tail between my legs to do surgery. (She was the Specialist from Denver University, whom I saw 19 mos ago.) The one that lit my fire to run away. And look, what all I have done in that time. So, no. I’m not sorry nor filled with regret. I am  soo proud of what I’ve done and so very pleased all the places I went to think it over. But now, I am at the end of my tether. The things I ground up, swallowed, mixed, pureed, cooked and ate raw. The vitamins and irons I faithfully swallowed. The good thoughts I thought. The optimism I stroked so tenderly. I have to work hard to recapture this again.

As I commented the other day, they can kill me but they can’t eat me. I will be up once more and I will put my warrior coat on and I will fight for the best life I can have. To even get another chance is a blessed gift from God. That the cancer has not spread throughout is remarkable. To have removed the largest one JUST with lifestyle changes, was enormous. I am in the best shape, physically, that I’ve been in, in a long time. I am not defeated.

So. I start marching.

Thumbscrews

Flying to Denver

After many days of amazing peace and tranquility inspite of negative (or medical ‘positive’) news I went to Colorado Cyberknife in Denver. A good friend had secured buddy passes to fly there rather than our driving over snow-packed passes and enduring long hours. We would’ve spent more on gas.  I remarked how rich I felt just to fly to Denver, overnight, and maybe even get a bit of shopping in.

The Hotel shuttle picked us up and whisked us away. Barely put our stuff into the room and set off by shuttle service that took us to the nearest shopping center. (Nice Russian driver, married to German wife.) I spent very little.

The beds were a dream and I slept really well, until… this sound woke me at 3:11 a.m. …. snoring! For a second I thought I was back on the camino. I clapped my hands a couple of times and that took care of it.

The transportation to Lafayette was a quite a problem. There are no buses, except to get a cab to Bus station, get on, transfer twice and then it would take awhile to drive those 26 miles and then walk back to Cyberknife address. Renting a car was out of the question as I would not be able to navigate through Denver with all these crazy, speeding drivers, trucks and everything else. Especially, not knowing where I’d be going. My friend couldn’t drive as she’d had surgery 2 weeks ago.  Neither of us wanted any added stress and so we took a cab.

The driver had to use his GPS to find it as well. Cyberknife is a couple of miles outside Lafayette.  Nothing else there. We wondered how other people would get there? My appointment was 2 hrs away. Luckily, we’d stopped at a German deli and brought food. The recepionist was nice enough to make us tea. There are no stores or anything close by.

Cyberknife Disappointment

The nurse took us to the examination room, took blood pressure (was up a bit and I suppose I was a bit anxious, or, as the nurse said “because you are here”. I filled out pages of medical forms and possible problems, which went fast because I don’t have ANY, except for the little c. I don’t want to name it the BIG C since I think I am bigger than it.

More manageable that way too.

The oncologist, Dr. S., came and we started talking. He asked me what I knew about this tumor. I told him that, according to my doc it was a cancerous lymphnode, now the size of a golf ball.

“What!? What?” he exclaimed, startled. “I don’t remember anything like that.”  He turned his monitor on and there was my internal picture of organs, etc. Then, there it was. Colored in primary red. The Thingy, the cancer, the nodule, the beast. It seemed strange that this was really inside of me. I viewed it with curious detachment. But it was not a GOLF BALL. Not this round mass which I’d envisioned all this time. It’s smaller and rectangular and sits with squatters rights next to the aorta, feeding. Although that feast quite curtailed, lately. Starving it.

The risks are the same as with conventional surgery. The lower bowels are in the way to a straight shot to the back of the abdomen, to the spine. It would be a bit tricky but could be done, if not a desired 3-4 treatments but lowering radiation strength and having 10 treatments instead so as to not damage my bowels. Non-invasive and pain-free. This is the plus side. On the other side, it cannot detect anything else. My PET scan was clean in any other way, I said.

I asked Dr. S. about metronomic chemo, or RCT. He had not heard of either but was willing to check into it.

There could be recurrence and there could be this and there could be that. I would be treated as an outpatient. That means I’d have to get a hotel, nearby and for 10 days go there for 30 min a day. Then, nothing else to do in this ‘nowhereness’. Well, I guess I could walk unless the icy northwinds blow.

Survival for the Wealthy

I had researched and found another natural treatment clinic, in Arizona. The cost? A mere pittance. ONLY $8000 per week with a minimum of 3 weeks plus it’s out patient so there’s an added $1500 for an apartment. So, there I realized that all these gentler, healthier options are out of reach and felt defeated in that desire. Although, ther’s still Bad Mergentheim in Germany. Lot less and that includes plane fare.

I have not heard anything from my local doc. There was to be this meeting with medical professionals, discussing my case and giving recommendations. I had called to ask about CA 125 date. No call back. Nothing. I feel very much alone in this search and all the questions I would have. I called again and was told that Dr. had been out of town and was on an emergency call. Then, I received a call from local cancer center, telling me I’d missed my appointment. ???  I said, I have not been informed of one. We rescheduled for next week. This is on an information gathering only.  I want to be informed of ALL options and newer technology and/or treatments. I want the BEST because I AM WORTH it.

Being on this poverty level has now taught me, that this is what it is. If you’re poor, you’re screwed. You have to do what mainstream says or live (die?) with the consequences.

I was not very peaceful nor tranquil yesterday. I feel pressured by my well-meaning friends, who called in a steady stream, after my return from Denver, to ask “What are you going to do? What have you decided?” I had said, time and time again, I am going to make a decision AFTER Christmas. That I was still researching and working as hard as I can to help myself. So. I will tell them, PLEASE. No more questions. Stop asking.

I had sent Dr. Professor Koebe (in Germany) an e-mail, asking for his advice. As usual, his reply was fast and kind. He congratulated me on my ‘fabulous spirit’ and to keep that one up. He also put another, seemingly disappointing outcome into perspective by stating: “You don’t know how things were and don’t know what may have happened and what it was before you went to the cross.” Ohh, that soothed my spirit again. His advice is still, open up and go in there after it, examine and take care of it.

Other people have been working on my behalf and offered advice and suggestions. I will follow up every lead, gratefully.

Next decision would be, where to have surgery.

Brain freeze

Can I trust my brain to make the right decision? Or, does it beat a path to least resistance? I think I’ve made good decisions over the past few years. I’ve tried to make the proper ethical, moral choices. In emergency situations, I did act and react with good speed and choice of treatment.

It’s amazing what one can learn when we start to educate ourselves and do not allow for pre-chewed ideas and opinions to cloud our minds.

Although I respect the genius of the cancer cell; it’s clever deception to sneak past the vigilant immune system, I do not want to get comfortable with it. Certain sources suggest that one should make peace with various, chronic illnesses. I feel that if I do this, I’ll become complacent. What with all this respect and mutual admiration, feelings of peace and light I am a complice and co-dependent in my own cell problem. Like a snake charmer who concentrates soley on the snake.

I shook myself free of this warm, fuzzy peace with cancer feeling and declared a serious Tumor Hunt. I have a few sneaky tricks up my sleeve as well to circumvent that tough, little outer wall of the C cell and obliterate it.  So there. This includes different measures at the time being. Holistic measures until I have assimilated all information, main stream medicine as well. It also includes very different culinary tastes.

Starting in the morning, upon rising, I take 3 enzyme tablets. For breakfast, 1 cup cottage cheese with 5 Tbsp Flax seed oil (from Johanna Budwig, German bio chemist who states that this will carry vital oxygen to the cells.) Add 1 tsp ground flax seeds and whip it into a frenzy to combine. To hide the oily-cheesy taste, I add frozen blueberries or other berries and this makes it tolerable and looks like a nice smoothie. It is very, very filling and I have to work to get it all down.

Then, I continue with the ‘Hufeland Clinic’ protocol, plus Tumeric, Curcumin, Vitamins: C-E-and B12, followed by the metals: iron, zinc, magnesium, copper, etc. More recently, added visits to Hyperbaric oxygen chamber.

After 1 hour I continue with juicing. Mostly carrot with apple and add ‘Green Pro’. Foul tasting and looking but filled with important chlorophyllic properties. I take fermented wheat germ which looks like dirt and when you add water/juice, it tastes like sweet mud. Yuk. Have to try hard not to get nauseous. But… this is not business as usual. I am working with everything I have to help myself so as not having to be ‘filet’ and filled with Toxins and poision.

Radiation Oncology Sydney Cancer Center studied 5 year survival rates of 22 types of cancer in the U.S.A and Australia. They studied 154,971 Americans with cancer, age 20 and older that were treated with chemo therapy. Only 3,306 lived to the 5 year mark. Study results: The overall contribution and adjuvant cytotoxic chemotherapy to 5 yr survival in adults was estimated to be 2.3% in Australia and 2.1 % in the U.S.A.

Cancer is a message. It wants to show you that something is running off the tracks in your life. ‘You go ahead”, said the soul to the body “because it’s not listening to me.’ “Alright’, replied the body, I will become ill, then he will have time for me.’  Although how this translates into children, even babies having cancer, I don’t know.

Another study, in Germany: Group A- 389  patients who underwent conventional therapy . (41.38 %)

Group B-patients who denied conventional therapy, including patients that could not be helped w conventional therapy methods. 312 patients (26.7%)

Group C: patients who did not even appear to consult and who’s fate could not be followed: 312 patients (33.0%

After 8 years, group A -only 102 (26.22% patients were alive with conventional therapy.

Group B- after 8 years, 183 were alive (85.11%) these were treated ONLY with Biological Conflict Therapy.

This is part of a treatment used in Germany. Brain scan is used to identify the spot, which highlights where those signals come from ad being sent and then this exact spot is treated with above mentioned thearpy. They also use a whole battery of holistic ingredients. ( Dr. Andreas Puttich, Darmststadt.)

Prof. Dr. Charles Mathe, leading Oncologist and Specialist for Oncology, in Paris, France stated openly: If I were to have cancer, I would not allow myself to be treated in  conventional cancer centers.  Only those cancer patients will have a chance to survive, if they stay away as far as possible. (Scientific Medicines Nouvelles, Paris.)

NOW, can you appreciate my dilemma??

Two days to go..

As I am waiting on P.E.T scan appointment I’ve been very busy researching my options.

Time is  somewhat of essence now and no more playing with it, nor running away. There’s a wealth of information to wade through.  Family and friends have been helping to find possible solutions. So many different approaches and everyone claiming theirs is best. Cancer, especially Lymphoma stage 4 as they claim,  does not leave a lot of room for erroneous trials. I still do not have any of those symptoms.

I have had an offer for a holistic treatment, handed down by many generations from Shaman’s. Even for free. A most touching and generous offer. This person would even come to my home., or have me at theirs, or even go to Shaman.

In the end I must decide. That is a very scary thing to do. What if it’s the wrong decision? Should I have done anything different?  I feel very much alone in this. Uncharted waters. So far, I’ve not had a strong feeling that I would be on the wrong track. So far, I’ve not freaked out. I am not trembling with fear as I have at previous times when results had increased. I am peaceful. Maybe this is what I brought back from the camino?

I have started on a new supplement, recommended by a trusted friend as well as the others I’m taking.

In yesterday’s mail, arrived an envelope from the Surgical Team. At first glance, I thought it was another bill and so it was with delight and joyful laughter that I read the card, which showed 3  letters on front -‘WOW’. Opening it, there was congratulatory sentiments over my accomplished camino miles and bravo’s to keep it up. ( I will bring them my wonderful Pumpkin- raisin- hazelnut-cranberry, low fat/low sugar, cookies.)  Also, a lovely card from Julio and Marianne.

Going back to my research this morning, I’ve found a place in Scottsdale, AZ., called New Hope Unlimited. A different approach. A holistic approach under controlled circumstances with a huge medical team at one’s disposal. Combining traditional medicine with holistic but one is give a choice. This feels like a good decision. Tailor made for what I would like to have happen while my body is still ‘pristine’ without chemo/radiation and thus can respond readily. I am already on lifestyle ‘diet’. Now, we just have to find out if Medicare will pay?

 

 

 

Twilight Zone

Over the last few days, since my CA-125 bloodtest, I’ve been wondering about the result. Not stressing, more like being very curious.

Yesterday was doctor’s appointment. He wanted to know about my camino hike and said what a tremendous accomplishment that was. Then he showed me the paper with result, which was high. Another few points added to the fear scale.

I said, “Oh this just shows that there is more sugar in my blood.”  

He just smiled but didn’t reply. Checked my lungs, which were clear. He noticed my weight and said I’d lost 8 pounds since May. I said I would hope so as I’d just walked nearly 500 miles. But, back to discussion as to what treatment.

I told him I did not want chemo. Should be the very last choice. He said that in his opinion I should have surgery. When I reminded him that the Denver specialist we consulted did not want to touch me without chemo, he assured me that we could find someone else. He was concerned about possible “seed pods” in the abdomen. He explained that P.E.T can’t “see” those and if they’d turned cancerous, I would be in a difficult place. Only through surgery could they look around and see other areas. Of course, this surgery would not be without dangers. The same is true, though, with Cyberknife or any other.

I asked if he would go “outside the box” with me and help me with alternate treatments. I still have about $500 worth of Iscador and other holistic meds I’d brought from Germany, and which have to be injected but ONLY by a Physician. He said he knew of 2 holistic docs in Ridgway. I said O.K. we’ll wait until P.E.T results and then I need to do something quickly. He said:  “Inge, you really need to. This is cancer we’re dealing with.”

I told him that chemo had not done too well for my friend Phyllis, who died while I was on the camino. Different cancer but same effect, as for so many.

My blood pressure was up but I’d imagine it was due to anxiety. After my walk, it had dropped 10 points.

I’m scared but want to have ONE more chance before pumping poision or radiation inside and kill off half my cells and then experience those side effects. Once this is done, any holistic approach would be extremely difficult to remedy the situation. Of course, holistic means also very expensive.

I am still researching for places which have a different approach. There are quite a few choices.

I needed to breath and I needed to walk. I made a quick salad, a small sandwich, took a bottle of water, grabbed my poles, and drove up to the Black Canyon.

We’d had a week of rain, snow, gray and I couldn’t walk a lot. I drove in and parked my car. Snow-covered brush and canyon walls. Beautiful view, sun, and only a gentle breeze. I was the only person. I took my day pack, which was astoundingly light, my poles, and walked. I noticed soon that where I would’ve been slowing down or was out of breath, previously, after all, this is 10,000 feet. I just plowed through. It felt so good to just walk. Then, the familiar click-clack of my poles. Stillness, peace.  I saw tracks in the snow from all sorts of wildlife. Rabbits and large tracks, probably elk.

I thought back to just a couple of months ago, when I walked and wondered what the camino would be like. Now, I was back looking around and noticing how similar the view and the absence of noise. I’d also noticed that I clipped that 1.3 miles in under 25 minutes.

I stopped at the picnic bench, brushed off the snow and had my lunch , I looked around  and enjoyed the peacefulness. I walked up to the edge of the cliff and looked down. The Gunnison river was like a small glittering ribbon. The walls of the canyon looked like they had been dusted with powedered sugar. It is so very beautiful there.

I didn’t come home with any answers to the decision I have to make but it sure made me more peaceful. I won’t be able to go up there when it snows again as I won’t have the proper boots and the terrain will be too difficult to walk. But, there are plenty of nice trails close to town.

Now, meanwhile, waiting for P.E.T scan and those results. That’s the BIGGIE.

 

Ode to feet

During our daily camino walk and climbing as well as blisters and other foot related maladies that I observed in other people, I was thinking about feet.

How unappreciative we usually are of our feet and the miracle they perform without us giving it a second thought. We spend a lot of money on hair, make up, nails. O.K. Some people have pedicures. I had my first one only a couple of months ago.

Usually, we just put on socks, shoes and run off. The first time I thought how very grateful I was for my feet was 2 years ago. One morning, while walking into the kitchen, I felt a sudden, sharp pain. I cried out and looked down what I’d stepped on. There was nothing. Puzzled, I looked at my right heel, sure that there would be a glass shard embedded. Nothing. The pain continued with each step and was so bad that I tried walking on tip toe.

I figured I probably pulled some muscle or small ligament and it would disappear after a few days. Well, it didn’t. I hobbled around doing my chores. I went on errands with the car and then hobbled into the store. I really have a high pain tolerance but this was getting worse. I had to stop walking. I had to stop volunteering at the soup kitchen, where I’d been chef once a week for 3+ months.

I took Ibuprofen, Tylenol, the usual. I was stuck in the house and getting depressed. I kept saying to my friends, ‘If I can’t walk anymore, they may as well shoot me.’ No one could tell me what the matter was. I gained weight for lack of walking. One day, I put the symptoms on Web MD. There was this odd name: Plantar’s Fasciitis. Now, I had a name but the prognosis was not very encouraging. I asked around and found a very capable therapist. For a month I went there and had electro-therapy.

While laying there, with nothing to do, for an hour, I talked. Poor guy had no choice . I’m glad to say that he and his wife became dear friends. Shortly after that, I changed my lifestyle due to cancer.

If someone would’ve said to me, a few years ago that what I was putting my mouth was wrong, I would’ve scoffed at them. I mean, I selected my vegetables carefully, I did not eat fast food, had no cokes or sweet tea, I didn’t even eat a lot but still had gained weight.

Well. Then when I did all that research on cancer and other immune illnesses, a light bulb came on. (Ten years prior, when I had cancer, I had eaten better and healthier but after my chemo and tests I thought ‘now, it’s gone’ and went back to my meat, sauces and oil/butter cooked foods.

It wasn’t long after I converted to Vegan, that a host of problems disappeared. Plantar’s Fasciitis has not returned.

I was absolutely certain that once people saw what it did for me, they’d be just so happy. They’d immediately copy it. (Some did.) Others were so full of resistance that I had to shut up about it.  Others tried it for a little while and because it’s not easy, in the beginning, they stopped, or, they changed it without the getting the great results. That was huge surprise and it continues to amaze me how people just want to have their crap (and eat it too.)

But, when I think of what my FEET accomplished I feel so very happy and grateful that something made me listen and change. I am in awe, that they carried me these hundreds of miles without a whimper. (The blisters don’t count.) I treat my feet much better now. I don’t need expensive pedicures.

Last kilometers into Santiago

Read Our Story

ORDINARY MAGIC

I was married, briefly.  The nature channels tell me there are penguins with longer relationships.

Read Our Story

The ultimate Camino de Santiago Journey

By the time a judge brought down the curtain, my mother and I were six thousand miles away, standing at a waystation on a yellow-arrowed path, like characters in some 21st century update to the Wizard of Oz.  My mother wanted a cure for her cancer, or at least a break from “all the cutting and poison”, as she put it.  I hadn’t believed there were any answers for my uncertainties high on the wild-dog-infested and wind-swept spine of a mountain range in northern Spain, so I had sort of convinced myself I wanted nothing.

blockuote-white.png
Inge in Bilbao, Spain, days before starting the Camino de Santiago

NEW ADVENTURE

I stood at the foot of a high rubbled mound. I was holding my new Nikon SLR, which I’d just bought from Costco via the rationale of this very trip. The video was on: Mom had talked about this moment for months, and I am nothing if not a catcher, or perhaps I mean a chaser, of moments. She was picking her way up the mound, through the powdery gray and white rocks. My fifteen-year-old second-cousin, Carrie, had abandoned her massive backpack and was watching the scene from my left. In a field to my right an older man, very tall, sturdy boots, backpack, was weeping.

Camino de Santiago Cruz de Ferro
Offerings left behind at the Camino de Santiago’s Cruz de Ferro

The mound was pierced at its summit by a thirty-foot-tall oak post, about as big around as a telephone pole. The very top of the post was fitted with an iron cap, like the sort of hat an English bulldog might wear, if an English bulldog had scored an audience with the Queen. For a structure with the grand appellation of El Cruz de Ferro, an old Spanish-Latin term that means Cross of Iron, the cap supported an almost comically tiny iron cross whose three free arms ended in fleurs-de-lis. For thousands of years, some version of the Cruz de Ferro had spied on countless pilgrims – first Pagan, later Catholic, now mostly Pagan again – as they formed meaning out of this very waystation.

For thousands of years a mound of rocks marked the summit of this mountain range. A million pilgrims before us had built up the mound with hand-placed relics from their own private rituals of letting go: of anger, of grief, of resentment, of illness – letting go even of the fear of death. Because that is what people do on pilgrimages, of any kind, whether they mean to or not. They let go. That’s what the verb to forgive means. To forgive others, and, harder yet, to forgive oneself. Jesus was telling us what he knew about forgiveness, but the bastards killed him before he could show us how to forgive ourselves.

Sign up – or watch the new Camino movies on OrdinaryMagicBook.com!

An ancient tradition held that pilgrims should bring to the Cruz, from their own homes, a small stone and a more personal item, and to leave them behind at the Cross. My mother was now placing, among the rocks, a small stone she’d carried from an ancient canyon near her house in Colorado. Previous pilgrims had also brought and left behind other, more telling things. A tube of lipstick. A postcard of Bruges, scrawled in a woman’s hand. Folded pieces of paper and fragments of words in Spanish and English, German and Dutch, Korean and Basque. Underwear that raised certain questions. A Matchbox car that looked to my inner-nine-year-old’s eye like a ’68 Corvette, give or take two years. A toy soldier – missing a leg, poor bastard – and the half-eaten cookie on which he’d been subsisting among the pebbles.

On the wooden pole itself I could make out a tacked-up orange baseball cap and a clip-less biking pedal, a gourd on a string, a black-and-white photo of a European peasant family, circa 1930s, a 1970s photo of a boy, in a shirt with blue stripes, holding a Bible, a pre-printed fortune cookie’s fortune: Do not throw the butts into the urinal, for they are subtle, and quick to anger. I saw a Prada label, an AC Milan futbol jersey, and a broken pair of cheap sunglasses. A German pilgrim had erected a small German flag among the rocks. Not to be outdone, so had a Belgian. Or vice versa, let’s not start another war.

My mother, still with her back to my cousin and me, had reached the top of the mound. The Iron Cross now loomed over her, standing stoutly in the wind. She bowed her head and pulled her second, more personal offering from a pocket in her field jacket. She cupped it with both hands and held it over her head, a modest proposal to the cosmos about what she should be allowed to let go of. When I saw her shoulders start to shake I began to cry, too, but quietly, because I was the expedition videographer, not to mention its chief biographer, photographer, legal counsel, and practicing podiatrist.

I handed the camera to Carrie and went to join my mother.
And now the book, Ordinary Magic: Promises I Made to My Mother Through Life, Illness, and a Very Long Walk is finally here!

100_1652
SAM_1968

Inge – Rabanal to Mercadoiro and the Iron Cross

Read Our Story

ORDINARY MAGIC

I was married, briefly.  The nature channels tell me there are penguins with longer relationships.

Read Our Story

The ultimate Camino de Santiago Journey

By the time a judge brought down the curtain, my mother and I were six thousand miles away, standing at a waystation on a yellow-arrowed path, like characters in some 21st century update to the Wizard of Oz.  My mother wanted a cure for her cancer, or at least a break from “all the cutting and poison”, as she put it.  I hadn’t believed there were any answers for my uncertainties high on the wild-dog-infested and wind-swept spine of a mountain range in northern Spain, so I had sort of convinced myself I wanted nothing.

blockuote-white.png
Inge in Bilbao, Spain, days before starting the Camino de Santiago

NEW ADVENTURE

I stood at the foot of a high rubbled mound. I was holding my new Nikon SLR, which I’d just bought from Costco via the rationale of this very trip. The video was on: Mom had talked about this moment for months, and I am nothing if not a catcher, or perhaps I mean a chaser, of moments. She was picking her way up the mound, through the powdery gray and white rocks. My fifteen-year-old second-cousin, Carrie, had abandoned her massive backpack and was watching the scene from my left. In a field to my right an older man, very tall, sturdy boots, backpack, was weeping.

Camino de Santiago Cruz de Ferro
Offerings left behind at the Camino de Santiago’s Cruz de Ferro

The mound was pierced at its summit by a thirty-foot-tall oak post, about as big around as a telephone pole. The very top of the post was fitted with an iron cap, like the sort of hat an English bulldog might wear, if an English bulldog had scored an audience with the Queen. For a structure with the grand appellation of El Cruz de Ferro, an old Spanish-Latin term that means Cross of Iron, the cap supported an almost comically tiny iron cross whose three free arms ended in fleurs-de-lis. For thousands of years, some version of the Cruz de Ferro had spied on countless pilgrims – first Pagan, later Catholic, now mostly Pagan again – as they formed meaning out of this very waystation.

For thousands of years a mound of rocks marked the summit of this mountain range. A million pilgrims before us had built up the mound with hand-placed relics from their own private rituals of letting go: of anger, of grief, of resentment, of illness – letting go even of the fear of death. Because that is what people do on pilgrimages, of any kind, whether they mean to or not. They let go. That’s what the verb to forgive means. To forgive others, and, harder yet, to forgive oneself. Jesus was telling us what he knew about forgiveness, but the bastards killed him before he could show us how to forgive ourselves.

Sign up – or watch the new Camino movies on OrdinaryMagicBook.com!

An ancient tradition held that pilgrims should bring to the Cruz, from their own homes, a small stone and a more personal item, and to leave them behind at the Cross. My mother was now placing, among the rocks, a small stone she’d carried from an ancient canyon near her house in Colorado. Previous pilgrims had also brought and left behind other, more telling things. A tube of lipstick. A postcard of Bruges, scrawled in a woman’s hand. Folded pieces of paper and fragments of words in Spanish and English, German and Dutch, Korean and Basque. Underwear that raised certain questions. A Matchbox car that looked to my inner-nine-year-old’s eye like a ’68 Corvette, give or take two years. A toy soldier – missing a leg, poor bastard – and the half-eaten cookie on which he’d been subsisting among the pebbles.

On the wooden pole itself I could make out a tacked-up orange baseball cap and a clip-less biking pedal, a gourd on a string, a black-and-white photo of a European peasant family, circa 1930s, a 1970s photo of a boy, in a shirt with blue stripes, holding a Bible, a pre-printed fortune cookie’s fortune: Do not throw the butts into the urinal, for they are subtle, and quick to anger. I saw a Prada label, an AC Milan futbol jersey, and a broken pair of cheap sunglasses. A German pilgrim had erected a small German flag among the rocks. Not to be outdone, so had a Belgian. Or vice versa, let’s not start another war.

My mother, still with her back to my cousin and me, had reached the top of the mound. The Iron Cross now loomed over her, standing stoutly in the wind. She bowed her head and pulled her second, more personal offering from a pocket in her field jacket. She cupped it with both hands and held it over her head, a modest proposal to the cosmos about what she should be allowed to let go of. When I saw her shoulders start to shake I began to cry, too, but quietly, because I was the expedition videographer, not to mention its chief biographer, photographer, legal counsel, and practicing podiatrist.

I handed the camera to Carrie and went to join my mother.
And now the book, Ordinary Magic: Promises I Made to My Mother Through Life, Illness, and a Very Long Walk is finally here!

100_1652
SAM_1968

The Cross of Chemo

Read Our Story

ORDINARY MAGIC

I was married, briefly.  The nature channels tell me there are penguins with longer relationships.

Read Our Story

The ultimate Camino de Santiago Journey

I was married, briefly.  The nature channels tell me there are penguins with longer relationships.

By the time a judge brought down the curtain, my mother and I were six thousand miles away, standing at a waystation on a yellow-arrowed path, like characters in some 21st century update to the Wizard of Oz.  My mother wanted a cure for her cancer, or at least a break from “all the cutting and poison”, as she put it.  I hadn’t believed there were any answers for my uncertainties high on the wild-dog-infested and wind-swept spine of a mountain range in northern Spain, so I had sort of convinced myself I wanted nothing.

I stood at the foot of a high rubbled mound.  I was holding my new

THE WORLD

IS YOUR HOME

blockuote-white.png
Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt.
andre gide

NEW ADVENTURE

I stood at the foot of a high rubbled mound. I was holding my new

Camino de Santiago start
Inge in Bilbao, Spain, days before starting the Camino de Santiago

Nikon SLR, which I’d just bought from Costco via the rationale of this very trip. The video was on: Mom had talked about this moment for months, and I am nothing if not a catcher, or perhaps I mean a chaser, of moments. She was picking her way up the mound, through the powdery gray and white rocks. My fifteen-year-old second-cousin, Carrie, had abandoned her massive backpack and was watching the scene from my left. In a field to my right an older man, very tall, sturdy boots, backpack, was weeping.

Camino de Santiago Cruz de Ferro
Offerings left behind at the Camino de Santiago’s Cruz de Ferro

The mound was pierced at its summit by a thirty-foot-tall oak post, about as big around as a telephone pole. The very top of the post was fitted with an iron cap, like the sort of hat an English bulldog might wear, if an English bulldog had scored an audience with the Queen. For a structure with the grand appellation of El Cruz de Ferro, an old Spanish-Latin term that means Cross of Iron, the cap supported an almost comically tiny iron cross whose three free arms ended in fleurs-de-lis. For thousands of years, some version of the Cruz de Ferro had spied on countless pilgrims – first Pagan, later Catholic, now mostly Pagan again – as they formed meaning out of this very waystation.

For thousands of years a mound of rocks marked the summit of this mountain range. A million pilgrims before us had built up the mound with hand-placed relics from their own private rituals of letting go: of anger, of grief, of resentment, of illness – letting go even of the fear of death. Because that is what people do on pilgrimages, of any kind, whether they mean to or not. They let go. That’s what the verb to forgive means. To forgive others, and, harder yet, to forgive oneself. Jesus was telling us what he knew about forgiveness, but the bastards killed him before he could show us how to forgive ourselves.

An ancient tradition held that pilgrims should bring to the Cruz, from their own homes, a small stone and a more personal item, and to leave them behind at the Cross. My mother was now placing, among the rocks, a small stone she’d carried from an ancient canyon near her house in Colorado. Previous pilgrims had also brought and left behind other, more telling things. A tube of lipstick. A postcard of Bruges, scrawled in a woman’s hand. Folded pieces of paper and fragments of words in Spanish and English, German and Dutch, Korean and Basque. Underwear that raised certain questions. A Matchbox car that looked to my inner-nine-year-old’s eye like a ’68 Corvette, give or take two years. A toy soldier – missing a leg, poor bastard – and the half-eaten cookie on which he’d been subsisting among the pebbles.

On the wooden pole itself I could make out a tacked-up orange baseball cap and a clip-less biking pedal, a gourd on a string, a black-and-white photo of a European peasant family, circa 1930s, a 1970s photo of a boy, in a shirt with blue stripes, holding a Bible, a pre-printed fortune cookie’s fortune: Do not throw the butts into the urinal, for they are subtle, and quick to anger. I saw a Prada label, an AC Milan futbol jersey, and a broken pair of cheap sunglasses. A German pilgrim had erected a small German flag among the rocks. Not to be outdone, so had a Belgian. Or vice versa, let’s not start another war.

My mother, still with her back to my cousin and me, had reached the top of the mound. The Iron Cross now loomed over her, standing stoutly in the wind. She bowed her head and pulled her second, more personal offering from a pocket in her field jacket. She cupped it with both hands and held it over her head, a modest proposal to the cosmos about what she should be allowed to let go of. When I saw her shoulders start to shake I began to cry, too, but quietly, because I was the expedition videographer, not to mention its chief biographer, photographer, legal counsel, and practicing podiatrist.

I handed the camera to Carrie and went to join my mother.

100_1652
SAM_1968

Running away from chemo

Read Our Story

Ordinary Magic

START NOW

FEEL ALIVE

Consectetur adipiscing elit curabitur condimentum, mi id volutpat mattis, enim nec arcu tristique dolor, eu mattis quam metus non justo donec id mi justo sed, lorem
eu erat porta accumsan a et erat. Integer lacus diam, fringilla sit amet dolor sit amet dapibus, maximus turpis phasellus semper vel est quis suscipit.
earth.png
Exotic Routes
Ulllamco laboris nisi ut aliquip ex ea commodo consequat.
calendar.png
Weekend Trips
Minim veniam, quis nostrud ullamco laboris nisi ut aliquip
photo.png
Great Shots
Lorem ipsum dolor ad minim veniam, quis elit nostrud
man.png
Friendly Guides
Minim veniam, quis nostrud ullamco laboris nisi ut aliquip

OUR FAVORITE

STORIES

Group-187.png

DON’T MISS THE LATEST VIDEO
FROM NEW ZEALAND

A little more info – Avemar Wheat Germ

EXPLORE

THE WORLD

photo-1484910292437-025e5d13ce87.jpg

START NOW

FEEL ALIVE

Consectetur adipiscing elit curabitur condimentum, mi id volutpat mattis, enim nec arcu tristique dolor, eu mattis quam metus non justo donec id mi justo sed, lorem
eu erat porta accumsan a et erat. Integer lacus diam, fringilla sit amet dolor sit amet dapibus, maximus turpis phasellus semper vel est quis suscipit.
earth.png
Exotic Routes
Ulllamco laboris nisi ut aliquip ex ea commodo consequat.
calendar.png
Weekend Trips
Minim veniam, quis nostrud ullamco laboris nisi ut aliquip
photo.png
Great Shots
Lorem ipsum dolor ad minim veniam, quis elit nostrud
man.png
Friendly Guides
Minim veniam, quis nostrud ullamco laboris nisi ut aliquip

OUR FAVORITE

STORIES

Group-187.png

DON’T MISS THE LATEST VIDEO
FROM NEW ZEALAND

The Cutting Edge

Yesterday, late afternoon, my little buddy was here and we were just enjoying a movie and a sandwich when the phone rang and my ‘other’ reality interferred. Oncologist/Radiologist from Cyberknife asked to speak to me and then explained the following to me. (Very nice and patient Doctor.)

Seems that I am a candidate for this procedure. Seems it’s not quite that simple, yet again. Pro- there may be only 3-4 treatments necessary to get rid of that tumor. Con- there may be some damage to some areas due to location of that tumor. AND, I still may need chemo!

Conventional treatment: Surgery, would be more informative as they could check surrounding areas, IF there could be additional nodules, which then would be biopsied for positive/negative results. Then follow up with chemo for a better quality of life. (Sounds backward to use ‘quality’ in the same sentence with chemo.)  Still not an easy choice. Still wondering which road to take? If, if, if.

I have to wonder again, WHY they did not take this lymph node out 10 year ago? I’ve had two surgeries within 2 weeks.  That’s when they told me, afterward, IF this lymph node made any problems, it would be diffilcult to remove. (I had purchased a long, purple zipper which I’d put under my hospital gown , so when they’d took it off before surgery, they saw it laying on my belly. Message: You sew that in there for easier access. They had a good laugh about that.) So, now I’m stuck with this cancerous, enlarged lymph node, like some ugly souvernir and have to make these awfully hard decisions. ( Am I whining? Well. Sometimes I get to do this.)

Even though there were other health problems that came in rapid succession, I was always in gratitude and proclaimed, “As long as it’s Do-able.” It’s still do-able but in a more sinister way and it’s not leaving a lot of room for erroneous decisions.

There’s another choice: Cancer Centers. Closest one is in Phoenix. I have some good friends, living close by.

Before all of that, there’s still hope that some ‘miracle’ will happen and through this long walk on the Camino, my body will heal itself. Then, we do a P.E.T scan, bloodwork and SEE what happened. (Although the P.E.T does not show everything, either, I am told.)

I’ve been up since 4:00 A.M again and these thoughts are circling like big birds. (Sure hope they don’t turn into Vultures.)

Any medical voices out there that want to weigh in?

 

Eat fresh, organic and raw

Well, at least raw twice a day. That does not mean a raw potato.  You don’t have to wait until you have a life-changing illness to change your lifestyle.

During my cancer journey, last time, I could barely eat anything. Chemo changed the taste of so many food items. Then, there was hardly any appetite due to long lasting nausea.

I would buy fresh products and create dishes. I would experiment with new items but what I neglected was organic. First reason, there was no organic market here. I’ve learned just because something looks green, or like a sweet potato, it doesn’t make it organic. It’s been sprayed into oblivion. It’s been trucked across and sometimes left sitting in the hot sun or cold weather. By the time, we pick it up, it’s been altered considerably. I thought I bought fresh. I did not know about mercury in fish. I did not know a whole lot about GOOD healthful food.

Then, about 3 years ago my health started to deteriorate. I had a myriad of ‘phantom’ complaints. I made the doctor rounds and no one knew what was the matter with me. I had heart palpitations. My hair started to fall out. I started to gain weight and had fluid retention. My eyes were so grainy and burning, I thought that I had severe allergies. My right kidney hurt. I had to go to the bathroom 12-14 times a day. (I went to the Urologist and he diagnosed me with ‘Interstitial Cystitis.’ This is when the mucuous lining of the bladder ‘eats itself’,breaks down. Very painful and chronic. Finally, I couldn’t stand the pain any more and went to a different Urologist, who diagnosed me with kidney stones. Geez. Eighteen month of pain. and a wrong call. I had a Lithotripsy to remove them. I finally got some Thyroid medication for the other problems.

Then, I got Plantar’s Fasciitis and couldn’t walk. It felt like I stepped on broken glass.  Months later, I finally saw a very good Foot Therapist and he helped with that. My friend Carla, tried to get me to eat ‘organic’. She  tried to impress its importance. She said, I needed to change my food. I kept saying to her, ‘ but I eat well and fresh. I can’t afford organic’.  When the lab report came back, it stated the stones were ‘calcium’ based, meaning ‘you eat wrong.’

On the right, this is what they look like The most painful ordeal. Child birth is a low 1 point on that scale!! This procedure cost $16,000. (Imagine the amount of organic food that would’ve bought.)

Finally, when I was re-diagnosed with cancer, 18 mos ago, I was so scared I changed my lifestyle over night! One of the first things I did, was, to appologize to my friend, Carla. For being stubborn, un-believing of her many years of knowledge and the gentle, loving way she tried to make me see.

I learned that even though, I knew a LOT about food and butter and cream sauces and wonderful dishes and pastries, I knew very little about NUTRITION. You can eat and still be nutritionally malnutritioned. That’s where the trouble starts. Your Immune system is falling apart, sending desperate signals of ‘symptoms’, which we ignore or, silence them with prescription drugs because hardly anyone is interested in the CAUSE. God forbid, we should do without that cheeseburger and lab-created, plastic maccaroni and cheese. Or, we think, that this only happens to other people.

I look at the many cooking shows where some designer Chef pours massive amounts of oil into pots and pans. Or, like the one lady who uses pounds of butter and sugar to make things taste good. Well, it takes a better chef to make food taste good without all that stuff.

Changing my lifestyle, even as a senior citizen, was the best thing I have ever done for myself. I’ve lost all that piled-on weight (43 lbs so far.)  No more pains, no more kidney stones. My skin is glowing, my eyes are bright. I have very good energy. I am full of Tatendrang (desire to do great things.) Some people do not really believe that I have cancer. How can I look, feel this good?  Well, I have no clue. The scans, bloodwork and tests say, I do. The first P.E.T scan showed 3 tumors. One in lower abdomen, this one disappeared with lifestyle change and never came back. One, in my lung (removed with VATS (1 at the inside of my spine (it’s the last one and that’s the one I’m researching for Cyberknife procedure.  (Remember? Non invasive, painfree, hard to get to place?)

I have renewed my attention and committment to eat better. I eat two raw meals a day (salad with 5-8 ingredients and home made, wonderful tasting dressings. I juice and do smoothies. I walk for miles, at least 3-4 days in the week. I feel great.

What I would like to impress on my family and friends, especially for my grandchildren, is, to start NOW. Start better habits. I worry about the sugar they eat, the bad carbs, the lack of raw, organic foods. Just think about it. Just love yourself enough to change.

The medical side wants to do surgery, chemo. I still try to hold that off and walking the camino is one of my ideas.

Let’s all go Nuts

I spend a large amount of time researching. On all German speaking websites, too. (Austria, Switzerland). I go to ‘Heidelberg, Munich, Cologne and other Universities. I check their wellness program and cancer approach. Last spring, when I went to Wuerzburg University to have a CT scan and bloodwork, I also visited the famous ‘Immunobiology Therapy’- Hufeland Clinic in ‘Bad Mergentheim’, Germany. It was an amazing experience.

They treat all kinds of Immuno-problems, holistically. Their Motto is:

1. Detox

2. Regenerate

3. Activate Defense.

They had a waiting list as patients come from all over the world. People come  to be treated without chemo or radiation but especially after they’ve already had one or both, to help put them together from all that toxic mess. I would have loved to stay but I just couldn’t afford it. While I waited for my appointment I ate a bowl full of nuts.

What I have learned, is that they all use the same dietary approach. Organic, local if possible and seasonal, low fat, very little sugar.

I have gone nuts over the nut approach. They’re easy to get, easy to eat and have tons of healthy attributes. MOST importantly though, they must be raw, organic, and unsalted. Here are the most important ones:

(Clinic is near this wonderful park.)

ALMONDS: have as much calcium as milk. They contain Vitamin E, selenium, magnesium and lots of fiber. (Most people need that, for sure.)

CASHEWS: are rich in minerals, like copper, magnesium, zinc, iron and biotin. Good news is that they’re low in fat and have a high concentration aleic acid which is great for heart health as well. Research states that one, big handful of cashews provides one, to two thousand milligrams  of tryoptophan, which will work as well as a prescription of Prozac.

BRAZIL nuts are a great source of protein, copper, niacin (more on that important one later) magnesium, fiber, selenium and vitamin E.

PINE nuts have vitamin A,B,D,E and contain 70% of required amino acids. Sprinkle lots on your salad, in your soup.

PECANS  are loaded with vitamin E and A, calcium, aolic acid, magnesium, copper, phosphorus, potassium, manganese, zinc and a few B-vitamins.

WALNUTS your heart and brain loves them and they contain cancer fighting antioxidants as well.

Now, maybe you’re looking for the PEANUT. Well, it’s missing on purpose from this honorable line up. Peanut, is not a nut but belongs to the bean family. It is very high in Omega 6 fat acid, which suppress the immune ssystem and can increas tumor growth.

Most (if not all) Peanut Farms use pesticides and therefor all is contaminated. They can also contain a carcinogenic mold, called aflatoxin.

Use ORGANIC Nut butters. Almond or Cashew. I’ve recently posted a recipe how to make that one yourself.

So. Mix up a bowl of nuts and seeds and go NUTS.

Same green, amazing smoothie

I’ve learned a new word, yesterday and thought it was most

fitting. “Entheogen” is from the Greek and means “Creates God within” (en=within, theo=God, gen=creates or generates).  This smoothie was created with kale, a stalk of celery, baby spinach, Italian parsley, and a green apple. All organic, of course. (I served this in a Bavarian hand carved glass. Because I’m worth it.)

Yesterday, I also spent a couple of hours creating this scrumptious Bolognese sauce. Also, known as a different form of Ratatouille. (Without the rat.) This is a true labor of love but it makes a whole bunch and freezes very well.

This gorgeous Bolognese sauce is made from: peppers of all colors, celery, carrots, onions, garlic, (sauteed in coconut oil and just a little butter) Italian parsley, mushrooms (sauteed in dry sherry) canned-salt free tomatoes, tomato paste, home made vegetable broth, red wine, oregano, a few chili flakes. Simmered about 2 hours.  This can also be served with potatoes and brown rice. Of course, I’m using spaghetti squash.

Super Green start of the day

I have been going a little side ways with my healthful lifestyle. I am coming back to it this morning, hailing it like a dear old friend, sorely missed. A super green smoothie will make my cheeks pink and my cells smile. (I’m trying to make this very appealing)

You will need:

1 hand full of fresh, organic spinach

2 celery stalks

1 green apple, cored

sprig of parsley

1-2 Kale leaves

Throw into mixer, add some good water (not from faucet) and give it a good whirl. To sweeten just a little, you can add a banana. I add 1 Tbsp of ground Flax seeds which makes this look like Pond scum but the taste is great.

 

Enema bag for sale….

The past few days have been extremely busy, what with all this cleaning, juicing, preparation of food, very early morning enema, and occasional adjustment of attitude. After all this I have come to the conclusion that I am not cut out for this particular therapy at this time. I am still juicing just not hourly.

The sheer amount of food and cost was staggering as well the exhaustive way to implement all of it. Friends came and helped out with tasks as well as buying bags of raw veggies. (God bless good friends!!) My emotional equilibrium had hit a few pot holes, trying to manage it all. I had to stop hiking which gave me such peace and joy and this whole thing was becoming overwhelming and stressful.

After the fourth or fifth juice I was nauseated. No matter what I said to myself, I was a hair away from vomiting and my stomach revolted. No matter what I tried and I did try, I could not hold the enema liquid for longer than three minutes. ( I fixed the connecting tubing problem with Duct tape. My best friend.)

I remember, after the last cancer I’d said: ‘I’m almost grateful for the cancer because it taught me so much and I learned so much about myself and loved ones and attitude, faith and gratefulness toward things.’ While this was true, I know I carried this acceptance too far. The object is to get rid of it. That’s why I did not wish to ‘own’ it, this time.

I should not have created such a nice, cozy environment for cancer to move into. (Of course worry, problems, financial matters, errant cells, etc) did the rest as well. Cancer is a symptom. We must find out the cause and must become our own detectives in this search. Having a medical professional, who is supportive certainly makes things easier. Not always the case when opinions differ from main stream medicine. An Italian oncologist believes that cancer is a fungus.

I am in search of another workable solution to treat myself. It’s like the Holy Grail. Everyone you ask for directions gives you a different one.

I remember when I talked to Senior Physician at the ‘Hufeland Clinic’ in Germany. She said that, in some cases they opt for lowering a person’s blood sugar. Cancer cells are really hungry for sugar, so they receive it as it along with a low dose of chemo and this does the trick, sneaking past the guard. The cancer cells really slurp up that sugar, then sneaking to those cells and  ‘BOOOM’. In this case the cells get poisioned, not the patient. Do we know this approach, here? Makes sense to me. This is different than toxic overload chemo usually done here.

What I remember too, is that each Physician that I saw, here and across the big pond, was telling me how lucky I am. I was of course puzzled and not only a bit irritated. Here I sit and have cancer and they’re telling me I’m lucky! Then explanation was added. To have had that many years without recurrence is extremely rare. (It had been nine years). Especially with ovarian cancer. My Doctor had told me, way back that if cancer would come back, it would be very difficult! I really wish they wouldn’t tell you things like that. I stays in the back of ones mind. So. To have ‘only’ a few small, tumors and they had not spread, was amazing. The one in the lung, was right at the edge. Clean, without creeping ‘fingers’ and easy to pluck out. Which we did. Only one left. At the spine attached to the aorta. What a place to be. Very hard to get to. This one, I’ll walk off on the camino. (There’s a plan B as well.)

Tomorrow, more tests to see the internal picture and cancer marker. I have stopped all supplements, vitamins, etc. I want a true reading.

Can we talk?…

You will excuse my hurried post this morning. I’ve been up since 4:00 A.M. although surpised, somewhat, that I could sleep at all after the ‘not-so-new-news’.  I am thankful to the powers that be, to give me peace of mind after the initial shaking and quaking. The running hither and fro with terror and flight of life feelings. After I’d told a friend, she suggested that, perhaps I had to ‘own’ the cancer to start to get better. I said, I ‘owned’  it last time and this time I’d just want to rent.

I thought, I may as well start my increased attention to the matter on hand. Coffee enema. I lost precious time while trying not to upset my ‘tender sensibilities.’ Yesterday came the push I needed. So. I boiled my (organic) coffee (with distilled) water the prescribed method and time. After it cooled I put it in the bag. Well, I’ll spare you the details. Let me just say, that the hosing is a piece of crap (no pun intended) and as I was laying there, being quietly pleased how well this was going, the coffee (four cups ) ran without interruption all over the bath room. Looked like a battlefield. Me included. After cleaning it up the first time, trooper that I am, I did it again with nearly the same results. Ninety minutes later, I am exhausted and it’s not even 7:00 A.M.  Definitely need a new contraption. I am now preparing laundry!

This I must do for the next four weeks. I am committed and serious in doing all I can to avoid chemo/radiation. Inspite of a messy start, this is so much easier than having to do chemo which, by the way has the same bathroom results when you’re sick and everything within you wants to come out. God, that was sooo bad!!

Then, I had to hurry to get my first juicing in as I have to follow the schedule, every hour on the hour. Who would come and help? Need someone for shopping or prepping food. I promise I’ll do the  enema’s myself.

Got to run.

Answers…

I need to order my thoughts before I try to put the kaleidoskope of thoughts down, following the phone call from Doc.

The explanation of the test would be long and in medical language. The slide that was done (and they’d stake their reputation on it) is, that it is cancer and as there is still that last tumor, near my spine, we need to proceed with a therapy and or treatment. Of course, the first thought was denial in some form. Maybe 50%. I don’t want it to be there, or, with all that I’m doing the tumor has regressed.

I forgot to ask about a ‘name’ and I forgot to ask if there’s a ‘stage’. (Maybe I don’t want to know until way down the road.)

The word ‘radiation’ surgery/chemo, nearly took my breath and I’ve begged off for a time, yet. I told my Doctor, I really want to do the camino first. He agrees that this would be a grand thing to do. I am doing so well that it is very difficult to perceive there’s anything traitorous going on in my body. This is the push that I needed to go ahead with Gerson’s therapy. Now, that the juicer is working and I have little else occupying my mind other than taking care of myself. Having my coffee in a different way.

There are still more tests on August 2nd and waiting for those answers. If camino and my faith in a higher power do not work, the next step would be plan ‘B’ and Cyberknife’. But before that, I want to have a scan to make very sure that there is actually something there. My thoughts right now are really like wild birds flying in every direction.

This, I know for sure. I am going on the Camino de Santiago and nothing will deterr me.

The Gerson Therapy: Cancer Cure, or Health Risk?

It sounds reasonable enough.  According to the Gerson Institute the Gerson diet:

is naturally high in vitamins, minerals, enzymes, micro-nutrients, extremely low in sodium and fats, and rich in fluids.

The following is a typical daily diet for a Gerson patient on the full therapy regimen:

  • Thirteen glasses of fresh, raw carrot/apple and green-leaf juices prepared hourly from fresh, organic fruits and vegetables.
  • Three full vegetarian meals, freshly prepared from organically grown fruits, vegetables and whole grains. A typical meal will include salad, cooked vegetables, baked potatoes, vegetable soup and juice.
  • Fresh fruit and fresh fruit dessert available at all hours for snacking, in addition to the regular diet.

Then things get confusing.  Reading about the Gerson Therapy is like my first weeks as a judicial clerk for a federal judge, where I could still be swayed by whichever argument I was reading.  Witness the Gerson Institute’s common-sensical explanation:

Throughout our lives our bodies are being filled with a variety of disease and cancer causing pollutants. These toxins reach us through the air we breathe, the food we eat, the medicines we take and the water we drink. As more of these poisons are used every day and cancer rates continue to climb, being able to turn to a proven, natural, detoxifying treatment like the Gerson Therapy is not only reassuring, but necessary.

The Gerson Therapy is a powerful, natural treatment that boosts your body’s own immune system to heal cancer, arthritis, heart disease, allergies, and many other degenerative diseases. One aspect of the Gerson Therapy that sets it apart from most other treatment methods is its all-encompassing nature. . . . [T]hirteen fresh, organic juices are consumed every day, providing your body with a superdose of enzymes, minerals and nutrients . . . break down diseased tissue in the body, while enemas aid in eliminating the lifelong buildup of toxins from the liver.

With its whole-body approach to healing, the Gerson Therapy naturally reactivates your body’s magnificent ability to heal itself – with no damaging side-effects. Over 200 articles in respected medical literature, and thousands of people cured of their “incurable” diseases document the Gerson Therapy’s effectiveness. The Gerson Therapy is one of the few treatments to have a 60 year history of success.

The Institute goes on to add that “it is rare to find cancer, arthritis, or other degenerative diseases in cultures considered ‘primitive’ by Western civilization. Is it because of diet? The fact that degenerative diseases appear in these cultures only when modern packaged foods and additives are introduced would certainly support that idea.” Gerson’s solution:  “Stay close to nature and its eternal laws will protect you.”

The Gerson Therapy seeks to regenerate the body to health, supporting each important metabolic requirement by flooding the body with nutrients from almost 20 pounds of organically grown fruits and vegetables daily. Most is used to make fresh raw juice, one glass every hour, 13 times per day. Raw and cooked solid foods are generously consumed. Oxygenation is usually more than doubled, as oxygen deficiency in the blood contributes to many degenerative diseases. The metabolism is also stimulated through the addition of thyroid, potassium and other supplements, and by avoiding heavy animal fats, excess protein, sodium and other toxins.

Degenerative diseases render the body increasingly unable to excrete waste materials adequately, commonly resulting in liver and kidney failure. To prevent this, the Gerson Therapy uses intensive detoxification to eliminate wastes, regenerate the liver, reactivate the immune system and restore the body’s essential defenses – enzyme, mineral and hormone systems. With generous, high-quality nutrition, increased oxygen availability, detoxification, and improved metabolism, the cells – and the body – can regenerate, become healthy and prevent future illness.

According to critics, however, the evidence for the efficacy of the Gerson Therapy is lacking.  While the Institute cites “peer-reviewed” studies, critics claims Gerson’s people (Gerson being deceased half a century ago) haven’t provided any objective, peer-reviewed evidence for its efficacy, and Wikipedia cites numerous authorities who refuse to endorse the therapy, and even claim evidence of harm. So which is it?

Peer-Reviewed Studies:  Gerson’s Side

I’m not able to evaluate the “peer-reviewed” studies the Institute cites.  Most, though, are around sixty years old, and many of them pre-date the diet’s use on cancer specifically (first uses were on migraines and tuberculosis), with the latest study in 1978.  In the current climate, so favorable now to raw and whole foods, the lack of any studies since 1978 is a red flag.

I also see in the Institute’s explanations a certain anxiety in the war of propaganda apparently being waged: “No treatment works for everyone, every time. Anyone who tells you otherwise is not giving you the facts. . . . In most cases your trusted family physician only has knowledge of conventional treatments, and is either unaware of, or even hostile toward alternative options.” They sound defensive, which does not give me confidence. On the other hand, some proponents of the Gerson diet say they are battling far better funded pharma companies and doctors who have an economic interest in remaining indispensable. But is that enough to explain even the Institute’s own apparent failures to cite evidence supporting their claims?

Peer-Reviewed Studies:  The Critics

The American Cancer Society (ACS) – which I do not assume is without economic and other bias, says:

There have been no well-controlled studies published in the available medical literature that show the Gerson therapy is effective in treating cancer.

In a recent review of the medical literature, researchers from the University of Texas MD Anderson Cancer Center identified 7 human studies of Gerson therapy that have been published or presented at medical conferences. None of them were randomized controlled studies. One study was a retrospective review conducted by the Gerson Research Organization. They reported that survival rates were higher than would normally be expected for patients with melanoma, colorectal cancer and ovarian cancer who were treated with surgery and Gerson therapy, but they did not provide statistics to support the results. Other studies have been small, had inconclusive results, or have been plagued by other problems (such as a large percentage of patients not completing the study), making it impossible to draw firm conclusions about the effectiveness of treatment.

Quack Watch reviews the Institute’s claims in more seemingly devastating detail, saying the Institute’s claims are typical of several “Typical Misrepresentations”:

Proponents of questionable methods typically claim that marketplace demand and testimonials from satisfied customers are proof that their remedies work. However, proponents almost never keep score or reveal what percentage of their cases end in failure. Cancer cures attributed to questionable methods usually fall into one or more of five categories:

  • The patient never had cancer.
  • A cancer was cured or put into remission by proven therapy, but questionable therapy was also used and erroneously credited for the beneficial result
  • The cancer is progressing but is erroneously represented as slowed or cured.
  • The patient has died as a result of the cancer (or is lost to follow-up) but is represented as cured.
  • The patient had a spontaneous remission (very rare) or slow-growing cancer that is publicized as a cure.

I know enough about statistics and the scientific method to find these critiques worth a pause.  If the critics are correct, the failure to produce any evidence of effectiveness over six or more decades is a serious one. An even-handed review by the seemingly more sympathetic (and Europe-based) Complementary and Alternative Medicine for Cancer (CAM-Cancer) also could not find support for the Institute’s claims, summarizing the matter thus:

Overall, the treatment has not been found to be effective as a cure for cancer. However, attempts to evaluate the Gerson therapy as a whole are problematic due to the complexity of the treatment, time taken for its possible effectiveness and poor record keeping/tracking of previous patients by the Gerson Institute.

So What?

Does it matter if the method isn’t effective at curing cancer?  Only if (1) it precludes using or slows the efficacy of other methods or (2) it’s actively harmful.

My understanding is that Mom doesn’t intend to use the Gerson diet in lieu of any effective therapy.  Chemotherapy, for instance, is not effective on lung cancer like hers. So it may not matter at all that the Gerson Institute does not recommend the use of chemotherapy with its diet (on grounds “the chemotherapy is seen as a poison in the body, and during detoxification the body would find difficulty in dealing with the level of toxins” – see CAM-Cancer).

Can the Gerson diet be harmful?  Apparently it can, according to the critics and CAM-Cancer:

Gerson therapy can lead to several significant health problems. Serious illness and death have occurred as a direct result of some portions of the treatment, including severe electrolyte imbalances. Continued use of enemas may weaken the colon’s normal function, causing or worsening constipation and colitis. Other complications have included dehydration, serious infections and severe bleeding.

The therapy may be especially hazardous to pregnant or breast-feeding women.

Coffee enemas have contributed to the deaths of at least three people in the United States. Coffee enemas “can cause colitis (inflammation of the bowel), fluid and electrolyte imbalances, and in some cases septicaemia.” The recommended diet may not be nutritionally adequate. The diet has been blamed for the deaths of patients who substituted it for standard medical care.

Relying on the therapy alone while avoiding or delaying conventional medical care for cancer has serious health consequences.

(Citations omitted; see Wikipedia).

How can we prevent these negative effects, Mom, while still getting the undeniable benefits of whole, raw food?

The Verdict: Cancer. Again.

A few days ago, Mom must have been having thoughts of mortality again, because she arranged for me to have power of attorney over some funds she has in an account in Germany “in case anything happens to me”.  She also mailed me her “UBC [USB] stick”, which has her notes on her life story, illness, and, not least, recipes.

Today she Facebooked this:

Dr. just called with Pathology report. Yes. It was cancer but he’ll send it off to Mayo clinic as he disagrees with pathologist [who erred in one of his key premises, that Mom’s lung cancer was her “primary” cancer, when her primary is the one from ten years ago:  ovarian]. It was “clean” without any others in there.

And she sent me a message from there too:

Just got report and it’s what I knew. Will now start the ‘Gerson method’ for sure. Need a different juicer. Mine’s crushing and not expelling the juice.– Will you start checking on flight cost? Where are we starting? French side? It’s the prettiest. :-)

In other words, she’s as determined as ever.  So here’s where things stand:

1.  We expect a report on the actual kind of cancer, and type of cells, from the Mayo Clinic within several days’ time.

2.  She’s throwing herself into the Gerson Method.  We’re looking into juicers that actually facilitate the whole point of juicing – at costs of around $1000 on eBay, but stay tuned to see who – we humble deserving sorts or the faceless eBay masses — wins the next auction (I’ll even take bets on who wins the betting).  Pricey, but we think it’s worth it.  Penny-wise, pound-foolish – and Mom’s pounds, so to speak, make up some very precious cargo!

3.  Mom is now clear that she wants to spend six weeks in Europe, walking as much of the Camino as she’s able, and then – and this thrilled me to hear it, Alp-lover that I am – reward herself with a few days in some Alpine spa, a la the old-fashioned “rest cures” popularized in Nobelist Thomas Mann’s The Magic Mountain.*

4.  I’m researching online and asking Don Julio, our Man on the Ground, what city to fly into, where to begin, what to bring, what it should weigh (a critical consideration), and so on.  As I do that, I’ll build our Resources page . . .

 

* Except that, if I recall correctly, Mann’s hero, Hans Castorp, a symbol of [pre-WWI Germany? European bourgeois society?] was sort of in love with being sick and dying. Though he visited the Swiss sanatorium of the title (based on the famous Waldsanatorium in Davos, Switzerland) only to see his tubercular cousin, his health got mysteriously worse and worse, so that he spent seven years there before being called up for World War I and, presumably, his end.  Mom is the anti-Hans.