Yellow Love and 2nd ‘new’ chemo

After my ‘new’ chemo, I was trying to be as ‘normal’ as I could. Doxil, the charmer had different ideas. The depression and deep, spiral to darkness had me scared and overwhelmed. I absolutely can understand when people, who hurt like this, committ suicide. Even though a tiny part of my brain did whisper that this is ‘chemo effect’, and interlectually I understood, it is very hard to deal with it. I’d go to the store and as I stood before the pasta a wave of such sadness came over me, I started weeping. I ran to the bathroom to control myself.

It also happens while watching T.V., going for a walk. Even in the tub and the howling that was produced scared even more. I definitely need to ask what is available to help. (Probably Xanax or another drug which will have its own side effects. Maybe hash oil would work, if I took a larger amount to put me to sleep.

On the other hand, however excrutiatingly real this feels, it is NOT a reliable emotion. The brain has been altered by chemo and therefor we need ‘sound minded’ family and friends to help differentiate. Those people who know me best and can sort through this mental mess.

On the tail of this darkness comes paranoia. ‘I’ll probably die. I won’t be able to get well, this time.. and other, similar thoughts. I think of my daughter, grand daughter, grand sons and my son. And I weep because I already miss them so much. I weep because, well, because. A song, a bird, a flower, a word, blue sky, rain, the mountains , because I have cancer, because I have blood clots, because I feel sorry for myself and because of no reason. My emotional equilibrium is way off. Its pendulum swinging from one extreme to the other. Friends call and ask ‘how are you?’ I don’t know what to say anymore. This has been going on for sooo long. I want it to be over. I want some semblance of my life back. I want to walk and just enjoy nature around me. I definitely want the pain to stop. Backache, abdominal pain, constipation, heart burn , on and on and on. I am exhausted by it. And now the question remains whether this chemo would work. I have no date scheduled for the nextinfusion, since we don’t know. Added stress. (What do you mean, it may not work?? What is in that bag? Sugar water?)

I get so tired of people complaining about such small and crazy ‘problems’. I know it is not their fault that I am in this situation and I really don’t blame them for getting tired of this long journey. Not as much as I am.

So. My wonderful friend, Bonnie came last week, holding out a plastic container with paper towel cover. I asked what was in it? She told me that her 2 grandsons (9 and 5)  Harrison and Mason (whom I know and love) had gone mushroom hunting with their dad. They remembered that I LOVE chanterelles. They had walked 8 miles ( 4 in and 4 out) to find these for me. Imagine. Walking that far and that age. I was in tears from this gift of LOVE. Impressed and proud as well. You can’t PAY for this sort of thing. I cooked them the next day and ate them with great appreciation.

 Then, it was time for my 2nd Doxil. Short check up: Heart, lungs, prodding and pushing on abdomen, blood tests (which were ‘excellent’.) Then, off to Infusion room. After the pre-meds, here came Hawaiian Punch colored Doxil. It woud not go in. Something wrong with the tubes. After a while, new tubes were attached and then it flowed pretty quickly. Had another CA 125 drawn to check whether cancer marker went up? Oncologist told me ‘not to freak out, if it went up because usually it take the 2nd one to bring marker down.

Meanwhile, I saw on my support group posting, that 2 more ‘Teal Warriors’ had died. Had me very upset as I had just ‘conversed’ with them, not so long ago.

Then there’s my friend Sue, who has a recurrence. Shout out to you Sue. Fight like Hell. If you want to know other and or additional information, call or come.

After the 2nd chemo, Cameron had to leave for a couple of days and invited me to come along to Silverton, where he had an offer, for the free work he had done, to stay in this B&B.

A very nice, Victorian house, blue and white trim. Lots of flowers and gorgeous views. Since this was short notice, the owner had previous engagement and so we had the whole house to ourselves. My room was lovely and next to it a huge bathroom with BIG tub and jets. I was (what else?) in a lot of pain and so Cameron got some Eucalyptus Epsom salt and I took a hot bath and felt some better. We took a couple of drives around the area and we saw just the most gorgeous surrounding. (We are on the ‘Western Slope which is many hours away from the devastating flood zone.) We went to the grocery store and I fixed our supper. I tried to go into a couple of stors but my back was killing me and so, frustrated and upset that I simply cannot DO anything, we went back.

I believe now, that this has to do with high altitude. Silverton is nearly 10,000 feet. My veines are compromised due to blood clots and the thin oxygen may deprive organs and extremeties of needed blood flow and thus cause pain. (Right? Dr. Inge??)

My Bonnie came Tuesday, punctually as always and for so long now. She took me to diner and then a movie. “The Butler”. Except for Eisenhower, the rest of the presidents is the same time I have been living in U.S.A . September 16th marked my 50th year. I went through all those growing pains and historical times of this country.

One week after chemo, the horrid depression has disappeared. THANK GOD. I have not called for my cancer marker result. Same reason as before. IF it went up, nothing I can do (except get upset). On Sept 30th when they draw new test, THIS one will show what has, or has not, happened.

 

New Chemo… and no Germany

I had 2 weeks in between being thrown out the ‘carbo/toxil’ chemo club and had to wait to set up the new ‘Doxil.’ Had to have a heart test prior to receiving this new one. Tech said, I had a good heart.

So. Tuesday, August 13th Cameron drove me to Grand Junction. I was pretty anxious. How would I react to this? What side effects would it give out? What IF this one does not work either?

Saw my Oncologist and we took blood tests to see what happened in the 2 ‘off” weeks. Then on to the chemo room. Sat in a recliner and waited to be attached. The chemo nurse wanted to tell me all the things and side effects that ‘could’ happen. I told her, I did NOT want to know. She said, ‘really’? I nodded and said, well, if it’s not in my head then I can’t wait for it to happen. Otherwise every twitch or sudden cramp will mean ‘is this it?’ I knew one of the side effects. Painful, swollen red hands which will crack open. (Of course, my old chemo companion ‘constipation’.)

Here came the nurse and she hung the clear, liquid bag with pre-meds. Saline and other things which I can’t remember because I have also ‘chemo-fuzzy brain’. (Oh, yes, there it is.. Benedryl.)

Soon after, here came a bag with red liquid in it. Leaning way back in my chair, I asked “what the hell is that?’ They should have told me that the chemo would be red. Just like ‘Hawaiian Punch.’ I had to really breath and work on my psyche to allow it in. Even to bless it.

We went home and then worked the next few days on loosening up  constipation. I am soooo tired of that. It’s painful and uncomfortable.

We had also drawn the CA 125 cancer marker. I did not call to ask what that number was. Usually, I’m on the numbers like a tick on a dog but not this time. If it’s up, I reasoned, there’s nothing I can do, if it’s down, goody. (They did not call me either, following my lead.)

As always, there are my good friends (Bonnie, Silke, Monika, Inge and more) as well as my Support Group ‘Teal Warriors’. Then, lots and lots of cheerful messages and support from ‘German Girls in America’ group. It sure helps a lot keeping some of the fears in check.

But, I had a real strange feeling as if something had shifted, internally, irrevocably. As though, all my cells ‘moved’. I can’t explain it any better. But, it had given me night mares. (No, no drugs, pills or whatever.) I have also had two dreams of my own funeral. THAT was weird! And upsetting. It occured to me, that ‘this’ could get me. Maybe I can’t outrun it. Maybe it’s nipping at my heels and I can’t run any faster. Premonition? I don’t believe so. Hopefully, just a strange time. Oh, I know. Let’s blame it on the chemo.

I had asked about Germany trip. She said, you have 28 days in between chemo. At first I was happy that I could still go but then, abdominal pain started again and every night, pain would wake me about the same time. I got my beanie bag and heated it, or when it is particularily worse, a hot epsom salt bath. I had asked my local doc for pain med. By the time I picked it up, 3 days went by and then they had ordered the wrong pills. I decided not to do anything as I remembered that any of these ‘stronger pills’ also caused constipation. So I would have to take one due to the pain of that source, just to have the same problem. I asked about Ibuprofen. Not really allowed on my regiment with Werferin, as Ibuprofen would also be blood thinning. But, perhaps I could take a half one? they allowed. Sure enough half a one helped.

When I gave up being worried about eating this or avoiding that because of the blood clot and vitamin K, my test for that improved as well. I eat what I want but careful about K and so now my number is ‘excellent’.

After figuring out that I would NOT have 28 days to go to Germany. I called and heavy hearted canceled. I could not have chemo and run to the plane and leave. The same on the return. I would need a few days either way to feel up to it. That way I would only have 2 and half weeks. Not enough to do what I wanted. Then too, I do NOT want to come back to chemo. I want to be DONE. This is now the 3rd time I have to postpone. Hopefully I’ll get there in May.

A new friend, Michele was coming all the way from Abu Dhabi to meet in person and visit for a week. I got things ready and was going to pick her up on Monday, then spend the night with the Lane ‘girls’ as I had an appointment with Oncologist, last Tuesday, early morning.  Saturday, I went shopping so I would have a few things and finished Cameron’s frozen meals as we were going to Telluride Wednesday. As I left the store, I thought perhaps, I should get chicken, in case we needed some more food. Back I went and bought organic chicken. Got home unloaded groceries and then did not go anywhere the whole weekend. Monday morning I got ready to pick up Michele. As I walked to the car, (wanted to clean it out a bit) I was assaulted by this horrid smell. Well, it was Garbage pick-up day and I hollered to the neighbor, ‘ man, it stinks like something died’. I looked in my shed, worried an animal got in there and couldn’t get out. Nothing there. We decided it was the grbage because it had been hot.

I walked to my car and opened it and LORD have mercy!! I got so nauseous, that I was worried I would vomit my toenails. Not sick from chemo but .. chicken. There it was, the plastic bag, laying on the front seat, forgotten to bring it in. I rushed to the grocery store to buy ‘Febreze’. You’ve seen the commercials? Blind folded people being put into raunchy, dirty, smelling cars or kitchens. They all exclaim how wonderful and spring like it smelled. Blind fold off, BIG surprise. Yes? Well, NO!! This is not true.  I emptied half a can till I was sick from the mixture of rotten chicken and Febreze. But, I had to leave for the airport.  I turned on the air conditioner, all the windows and as I drove, sprayed some more. OH, I thought, to be a dog and hang your head out the window. Luckily, by the time I arrived, it was not so bad.

I recognized Michele right away and was teary when I hugged her. We met up with Laurel, Carrie, and her new boyfriend and precious Hayden. We had a lovely visit with the girls and nice dinner.

Next morning, cancer center. I told Michele, I only take her to fun places. I did ask, this time what my numbers were. Sure enough, during the 2 chemo free weeks, they had doubled. After the first Doxil, no change. But, it was too soon. Maybe test after 2-3chemo’s. My blood test were ‘excellent’. Right to the pint of where my bone marrow is still producing red blood cells. I am grateful that inspite of everything, my body/Immune system is trying to help.

I took Michele to the Black Canyon and next day to Telluride. Went to Karaoke and watched as Cameron (and others) sang. Lots of wolf whistles and female appreciation.  He’s got good moves, my son. (Of course this is from me.)

Cooked a nice dinner for the gang but after 2+ days and the altitude and not being able to hike, etc. I needed to come home.

Cameron brought Michele back on Saturday and I took her to the airport Sunday. Sure glad she was here. House is empty and still.

Meanwhile, my son’s and (ex) wife’s book came out in German  “Die Katzenfluesterin”.  The Cat Whisperer. I am so excited and tickeled. I am going to order it in German.

Next chemo, September 10th. I have all this time to spoil my body and be gentle and kind.

 

 

BIG Rollercoaster ride…

As I was envisioning the end of chemo, other forces were hiding, internally and getting ready for a big surprise. 

Oncologist had ordered a CT scan to find out why cancer markers are going up. (In the middle of treatment!) My friend Inge B. drove me to Grand Junction last Monday, to do just that. I put enough Lidocane cream on the port side to last a week. I don’t like the needles. It sure works. After that, she treated me for lunch and then we drove home.

Chemo Tuesday, my friend Lynne took me, dropped me off while she ran some errands. Nurse came to prep for chemo, when Oncologist came in with paper in hand. I looked at her face and my heart started pounding. She shook her head just a fraction but enough to have icy cold fingers grab my heart.

What is it?’ I asked. ‘Seems that there is a new lesion on the liver. It was there prior but now it is 10 mm and positive for cancer, she said.

“LIVER??” What the hell happened there? I had problems assimilating the words in their proper order. But as if that wasn’t enough, she also told me that chemo quit working. We took another CA 125  test and it came back, again elevated. So. That means, that the 6 rounds of chemo (18 in all) stopped working because the cancer cells are ‘getting smarter’, she said. I told her, that if this Crap wasn’t inside me, I would definitely be in awe of so much brilliance.

I was absolutely stunned. Shocked. Scared. What to do? Well, she said, we’re going to have to use a different chemo-DOXIL. Once a month. Your hands may get red (inflammed) and skin peels off but you won’t lose your hair! HA  I was silent. Just thinking of the misery and wasted MONEY of these chemo’s.

She gave orders to stop the chemo as there was no use putting me through it, when it’s not working. So. I left the chemo ward and felt like I had been thrown out of this ‘exclusive club’. All others were getting their (workable) infusion, except me. I just didn’t know what to do. I called Cameron and told him. I called Bonnie and Monika. Each time it felt more unreal.

Back home, I just wandered around the house, trying to absorb the shock. I had asked about Germany. The whole six month of mental preparation and Joy of being able to go. She said, I could still go, if I can handle new chemo. I would have 28 days before the next chemo and have to be back. We’ll see.

My childhood friend, Irene would also go and that would be the first time in many years we’d be there together, revisiting all the places we played at as children.

I was not thrilled having the whole week and week end looming before me, waiting for new instructions. I did not want to think about, research nor deal with it. My friend Lynne was going to Salt Lake City to visit her parents and she invited me to come along. So I did. Forgot how long a drive this is, for nearly 6 hrs. But, it was nice. We went to Cosco and next day, to the German Deli.

Back home, I was still waiting. So I called them, left a message and Oncologist called back and told me Tuesday- 13th we start. I feel like I got a big chink in my Armor. Things don’t fall together as well as they did. I feel that my body betrayed me. No matter how good I treated ‘it’. I am getting so exhausted by this whole thing. It’s over 3 years now and people are getting bored by it, too. It’s a though I have a whole sack full of rocks and must climb the mountain, only to slide more than half way down and have to repeat, repeat, repeat.

I need to go ‘somewhere’ and regroup. Be still, think and refill my ‘fighter tanks.’ That would be the Black Canyon. I’ll get off the beaten path and sit and look at the awesome surroundings. I will do the best I can.. the rest is up to bigger sources.

Yesterday, my Sydney came and worked in the wild looking yard. She also took me to Dispensary as I needed more Hash oil for this pain in my pelvis and couldn’t drive. (What’s that all about?) Peggie brought me some fruit and other goodies. My Teal sisters surround me with their love and support as do the ‘German Girls’ and my FB friends. Huge support and I am so very grateful.

Not so nice changes

After I have had such a nice week off chemo and doing what I like best, I had to return to my 6th cycle of chemo. To ordinary folks that means 18  of those cocktails. That day was uneventful, aside the toxins.

I woke up 2 nights later to use the bathroom. I usually go in the dark, since I know my way so well. This time, I felt strange and thought it was my eyesight and the dark. I turned the light on and the whole room was spinning. Like a BAD drunk. But, I had to go and bumped against the wall and could barely get there. Back in bed, it continued. I tried placing my foot on the floor and sat up but this got worse. Little, black spot, cold and clammy and I thought I’d pass out.

Was getting anxious and freaking out a bit. Who do you call, at this ungodly hour? It was 1:00 o’ clock. Went mentally through the list of my friends, who had assured me that I could call ANYTIME but they all lived a distance away and I thought I needed someone fast.

So. I called my nice neighbor, Nancy. Asked her if she would come over. She was here fast, in nightgown. Sat on the other side of the bed and rubbed my back . I was getting nauseous as well but took some hash oil and that worked in a few, miracilous minutes. At least no vomiting the bed.

She asked, ‘what do you want to do? ‘  I said, I didn’t know but we could call Doc’s office here and night operator would know how to get ahold of one.

Luckily, my old doc was on night shift and therefor I did not have to explain all the way back to Adam and Eve.  Although, he said, he could not determine over the phone what this episode was. I should come to ER. This ‘could be Vertigo’ OR this ‘could be a tumor on my brain!!’ Great choices in the middle of the night to be told! ( I tallied up the several thousands of dollars this would cost.) I said, NO, I think I’ll wait till morning and come in. If I pass out, my neighbors will drag me to ER.

Nancy stayed with me all night. I told her to try to get some sleep, I would wake her if something happens. The hash oil put me to sleep as well. Woke early and though I was still dizzy, it was not as much. At 8:00 A.M I got a call from doc’s office with appointment.

I went (different doc) and they took Vitals (bloodpressure, pulse and finger stick to see how blood thinners work. He had no clue as to what to contribute this episode to. “Probably from chemo’, he said and that was that.

I hung around on my couch pretty much all day. Was listless, fatigued and still off kilter. Tried to figure out, as so many times, what could have happened and why? Well, I don’t have the answer either.

Went on with my business. Tried to clean house a bit, had to go shopping, cook something. Every time I go to the store, prices have gone up. A few tomatos are $3.99 (Do they really think that one cent difference to $4.00, makes us buy with joy??)

Cameron came Monday eve to take me to chemo Tuesday. I was a bit anxious as CA 125 blood test was on the plan. (To measure cancer marker.) I packed my ‘chemo bag with bottled water, a few yoghurts and cherries and 2 pieces of coffee cake. I can’t leave to eat and I can’t eat what they offer. Salad and an awful potatoe bisque.

I was kidding with receptionis as I had not received the usual ‘reminder to come’ call. I said, Chris didn’t call but I came anyway. They said laughing, they were happy to see me. Lab tech came and we filled 4 vials of blood. (I’m thinking, each week that much, wonder what to eat/drink to replendish? Beets came to mind.)

Then visit with Oncologist and retelling of episode. She also thinks, it’s an accumulative effect of the chemo. I said, I think I reached my tether with chemo and I hopefully could stop and CA 125 would be in normal range!  She said, will you kill me if it isn’t? I said NO, that’s against the law and I want to go to Europe NOT jail.

Then we went to the infusion room and hooked up for my cocktails. Cameron went outside to work and calls.

After a little while I saw Oncologist come in and holding a piece of paper. I looked at her and said, YES? what is it? She shook her head slightly and for a second a cold hand twisted my heart. IT WENT UP!! I felt a little betrayed by my body! Ok. Ok. I said, 8 points is not that much. We all know that this is not an exact science and other factors could have contributed. Change in diet, which has me upset since all the ‘healthful foods are almost off the table. Because of the vitamin K and blood clotting factor. Also, taking Warfarin. I’m disappoined but this will not change my plans. Instead of waiting to the end of chemo (which we anticipated by having a good number) to have a CT scan to see what the tumor is doing, she scheduled a CT scan right away and as soon as they call with appointment, I’ll have that to contend with.

Cameron came back in and saw the expression on my face. He hugged me and said, this is just a temporary, little set back. We’ll do this too.

I had sent a message to my support group, my TEAL sisters and immediately the comments and loving support poured in as was the same with my FB friends. Nothing from some family members but it seems they have a different priority.

My good friend Bonnie came with food. We had decided on a baked potatoe with all the trimmings, since this is what I’m allowed to eat. Had a good visit and talked this new thing over. It’s so good to have good friends.

I have decided to regroup and circle the waggons. I will renew my efforts and eat as closely healthy as I can. I KNOW this makes a difference. I have proven it before. This is just a little ‘hiccup’. I have 4 weeks before the next CA 125 and hopefully can walk as leg and foot feel better. Some may think that this sounds like ‘Denial’ but  I asure you, it’s not. Coincidentally, I saw a man on T.V. who said, YOU CAN DO ANYTHING THAT YOU PUT YOUR MIND TO’ , as he levitated several feet off the ground. The MIND is more powerful than anything. We just have to learn to harness more of it. “You can think yourself well and you can think yourself sick.” I will do what I can.

 

Hot days and cool cooking

The continued heat makes everything harder to do. There is a certain inertia, when you step outside and a hot slap assaults your face. No rain since May. I am going walking early in the morning while it’s cooler.

Last Tuesday, was chemo day and a friend drove me to Grand Junction, so Cameron can have some days ‘off’. I was so sure, that the scheduling nurse had made a mistake, I called her over to ask what happened to July 9th? I didn’t want to get it all confused and somehow miss having a chemo. She and another nurse checked and it was my ‘chemo brain’ that had lost an entire visit there.

While I was waiting in the lobby of the cancer center to sign in, a woman spoke to me. ‘Excuse me,’ she said, ‘where did you get that shirt?’ At first, I was bit puzzled because this is an old shirt, white with two colorful parrots painted onto the right front. ‘Oh, my niece painted them a long time ago. She’s very talented’, I said smiling. 

She really liked that shirt. A man was sitting across from her and a younger one opposite. She asked me, what I was doing there? Waiting on someone? I told her, no, I’m waiting on chemo. She said, you are too cheerful to have chemo. Ohhh, I said, ‘not always.’ But, I can decide, each time with which degree of fear, dislike, etc. I approach this treatment. I then told her of the lifestyle changes I had made. I told them about walking the Camino de Santiago. I really had their attention then. She told me, that her husband also was just diagnosed with colon cancer.They were there to find out all the hard stuff. Stage, treatment, possible surgery, etc. They looked like they been hit. Which, of course they were.

Before too long, they were called to their oncologist’s appointment. I quickly tore a bank deposit slip (had my adress, phone number on it) and told them, that if I could help in any way, to call.

Meanwhile, it was the 4th of July celebration, which I was invited, first by the neighbors and then later that afternoon, at a friend’s house. Ate hot dogs, a burger, beans, and 6 salad leaves (because of the Vitamin K thing.) Then, they talked me into a slice of home made apple pie. At first, I was steadfast and said, ‘no thanks, I think I quit while I’m ahead.’ Well, that didn’t last long when I heard all these happy sighs. So, I did eat a slice… with whipped cream and a dollop of ice cream. My Goodness. Nausea hit like a well aimed arrow and I ran for the bathroom. Luckily, I had my hash oil pen and immmediately took some deep puffs. After a few, I coud feel the nausea receding. Just like someone threw a soft blanket over it. A little shaky but otherwise restored, I went back to the kitchen. I tell you for sure… Pure Magic’. I was upset with myself for eating like that. I had not had a hot dog in over three years. I had not eaten as much in long time.’ If you dance, you got to pay the Piper’.

Yesteray, I was invited to a concert, given by a very talented Bob Milner. Plays some ‘mean’ piano tunes. From Blues, to rag time to Boogie-Woogie. Had us snap fingers and tap toes. Nice break in an otherwise boring Sunday.

Came home and sat back with a good movie, when the phone rang it was the son of the people I’d met at the cancer center. He told me, that theye were now ready to change lifestyle and would I consider coming to Grand Junction and show them how to do this. Of course, I said, I would be delighted. (Of course, they will pay me.) He told me, that his parents (as well as he) really liked my positive outlook inspite of the C world. His father could really benefit to be around me, especially since this was my 2nd time around, dancing with the ’emperor of all maladies’. I told him that having cancer was not automatically a death sentence. It is a definite change in ones life but we have a choice how to react.

We decided on Saturday. Sure hope my car will not be expensive to fix as I first, drive to Telluride to visit and bring (frozen) dinners to Cameron and hopefully go up into the mountains and see those awesome wild flowers. ( I really want to see Cameron singing Karaoke.)

I am thrilled to be able to ‘cook’ and teach about healthier lifestyle, so at least bump up the Immune system to have a fighting chance.

I am still struggling on finding something to eat which does not throw off the ‘Cumadin’ blood thinning med. Can’t eat too many greens. Can’t eat too much fruit which contains K. I never even thought about ‘K’ and now it absolutely controls my life.

I am excited to design menus for my new friends. I love having a ‘purpose’. And, just in time, my leg feels much better to where I can stand, walk for more than 30 min. Life is good.

 

 

CA -125 Ovarian cancer blood test

Last week, was my OFF chemo week. I felt somewhat like I was playing ‘hookie’. I felt pretty darn good, well except for the bum leg but even that one is improving. For the first time, in many months (nearly a year) I walked 25 min. I had my old camino poles and set out for a few blocks because I was ‘lazy’ and then I rememberd how, only a short few weeks ago I had to lay on that couch, not being able to walk at all and I pushed myself onward. Ended up going longer. I was pretty proud of myself.

I visited friends and did some ‘normal’ stuff. I went to second hand shops to find a lamp and night stand for Cameron. I cooked and baked. A friend of mine had a yard sale and I put some things in it but hardly anyone came. I think, she sold a few of my books. Not enough to help with costs.

A lovely surprise was the visit of my long time friends Garwen and Garci. Have not seen them in several years. Had a nice few hours. Always too short but better than nothing.

Also trying to stay cool as temps are up in the 90’s and the daily hot, strong  winds are a great fire danger. Very low humidity makes a tough job for forefighters in Eastern Colorado and trying to contain the “Black Forest Fire.”

As the day to another cycle of chemo came closer, I also became more anxious as I also had a CA -125 scheduled. This is a tumor marker and stands for : Cancer Antigen, which is measuring the protein in a cancer cell to determine how much is floating around. This test is NOT an exact science and it has its faults but it’s the only one we have. Different cancers have different numbers. Beast cancer has CA-138.

My whole system had just returned to normal. Everything was working well. But… I had to go back on Tuesday. Cameron came from Telluride, Monday eve and we took off at 8:00 A.M for that 1.5 hr drive. At 9:00 A.M it was already 90F. Another hot, dry day.

I had baked a dozen Muffin shaped, little white-chocolate-raspberry cheese cakes for Oncologist and nursing staff. They said, it was more than delicious.

I put the Lidocaine cream on about 1 hr before we got there so it can really numb my port entry. Most cancer people are not that worried about chemo, since it does not hurt going in (side effects later) but the needles going into port causes anxiety. My blood pressure, which is a nice 120/78 most of the time, went to 147/94. Anticipation. Even though outwardly, not even I can tell.

I requested that they would call me as soon as they had the result as last time it took several days of nail biting worry and phone calls before I found out it was 116. Not as bad as some but not as great.

As I sat in the Lazy boy lounger attached to the IV’s, the nurse came and handed me the result. (Oncologist had rushed it through). She also came by my station with a big grin. We had made a little bet. She had said, it’s probably around 50 and I had said 45 (well, a little more hope.)It was a LOVELY, lovely 59. Normal range is 0-35. Next time, next month there will be another one and GOD, let it be 30! or, lower. There is an end in sight. Later on we will also have a CT scan (racking up those test costs) to see what the tumor is doing. I am envisioning that it’s dried up, shriveled and useless, even to the ’emperor’, hanging by a tiny thread.

I also asked Dr. M. to check on CT scan picture to see if there’s anythting left of the small lung tumors, which I had called ‘seedlings’. None there as far as she could determine. Ohh, a pocket full of miracles.

So. This morning, I have to go for a little finger prick to check on slow moving blood. Professionally, it’s known under: prothrombin time test, PIT for short. It is reported as an International Normalized Ration (INR).  Hopefully, this too has improved and the blood clot is disappearing.

I have also ordered a ‘Cumadin cook book’. It’s annoying having to consult the Internet each time I want to prepare food, to see how much ‘K’ Vitamin is in stuff. All these numbers, what a crap shoot.

I am not complaining at all. This gives me renewed energy and hope and strength to think, that this is NEARLY over. Only a few more months before I want to go to Europe. Use up my frequent flyer miles and staying with relatives and friends. I could not afford this any other way. I will have to go to a medical facility to have my port ‘flushed’. It’ll have to be in there for several more month, just to be sure. I am not sure if I’ll have it removed, which would be another invasive surgery and then the worry, “What if IT comes back?” Then I would have to go through all that again. I would have to have it flushed once a month though. I’ve had 10 years of remission ( very rare with ovarian cnacer) but also know that each time there is a recurrance, time is getting shorter in between. But, I’m not thinking about that. I’ll have at least another 10 years.

I am very grateful again. Not getting caught up with superficial stuff. Thanking my friends, who go through the hard stuff with me, as well as Cameron. Never complaining as he drives 6 hrs round trip.

Also, my support group ‘Teal Warriors.’ A fine group of ladies with some bad, crappy cancers and side effects, many far worse than mine. We lost a dear ‘sister’ a couple of weeks ago. They are there when I want to whine and complain because I KNOW they understand. That’s one place we can unload, ask questions, get great, joyful Hurrah’s when tests go better and each tiny improvement is celebrated. Thank you, dear sisters.

 

 

Eyebrow….wigs?

The other day, my friend Bonnie came for her weekly visit and to either take me out to dinner, or picking up something. 

This time, I felt well enough to go out. After ordering our dinner, we talked about ‘everything’. She asked me why I had not posted anything. I looked at her, a bit puzzled and replied ‘because nothing is happening and I don’t want to just whine what I can’t do, or used to do, etc. Well, she said, people don’t know that and they are worried when they don’t hear from you. When you suddenly stop.

I was properly chagrined. So, I apologize. But, I do have ‘sort of an excuse’. Chemo is messing with my brain. My memory is faulty. I have a hard time thinking of the word of the moment. In one sentence in can happen that I’m searching, or my brain searches for several words. I feel like we’re playing charades. (Just  a moment ago I had to look up ‘apologize’. Couldn’t remember if it’s one ‘p’ or two. I have learned to be patient (most of the time) with myself. I was wondering aloud, to Bonnie, if there would be someone to invent ‘eye brow wigs’?  We have false lashes and mustaches and hair but nothing for brows. Mine are all gone. I try to pencil them in but am not good at it. Oh, let me tell you what had happend 11 years ago, when I had now brows either, (from chemo.) After I had had my last chemo, a couple of weeks later I visited Cameron in Portland, (OR). 

I was still bald as well. Put on my hair and my make up. The bathroom lighting was not the best, so I did most of it by memory.

Then, cheerfully went shopping. I noticed that people were really looking at me. After awhile, when this kept on happening, I worried that I may have something on my nose, teeth, etc. So, I went to the rest room and looked into the mirror. Ahhh! I had grabbed the wrong color pencil and instead of brown, a bright blue. Really noticeable.

My birthday was absolutely wonderful. I’ve received so many (paper) cards and flowers, books and chocolates and a French coffee press. Then phone calls from Hungary, Switzerland, Germany and a few states in U.S. Lots of Facebook birthday comments and pictures. I felt truly special.

My friend Peggie and husband took me to a Puerto Rican restaurant for lunch where I had a great ‘fish ceviche’.

Cameron’s aunt Jayne came from Rangely and we packed up food and other important stuff to take to Telluride and visit Cameron and be spectators for the grand balloon festival. Cameron had asked us to bring his bike, which had wintered in my cellar. Jayne has a big pick up and we could haul just about anything. I went to the cellar and saw the he had chained and locked the bike around some pipes. I texted and asked for the combination. He send three. None of them worked. Jayne tried, the neighbor tried. Nothing. Could not unlock that bike. I saw in my minds eye, the bike would be there, still in 150 years, chained to the furnace.

Jayne remembered that she had bolt cutters. So, this was brought down. It totally cut through the rubbery part and exposed 4 shiny, thin cables. I tried, she tried and the neighbor tried. Nothing. That is one good lock! Wondered how they steal bikes so easily when we couldn’t get one milimeter out of it.

I researched ‘how to unlock cable chains.’ Most of the websites  suggested to go to a bike shop.

Meanwhile we took off and drove to Telluride. A most beautiful day. The majestic views of the mountains, still capped with snow, the blue, blue sky, then the greening trees and meadows. Never gets boring.

I cooked lunch, which I had prepared ahead of time and only needed to reheat. Then, out on the town. Gosh, Mercy! That altitude had me huffing and puffing. ( It’s over 8000 feet)My leg hurt but I wasn’t about to stay inside.  We went to see the beautiful library. Since we had time before the balloons, I asked if we could go to ‘La Marmot’. A long established Restaurant. A bit pricey (like so many things in Telluride) but I had always wanted to go. Cameron said, sure, let’s do that, since it was my birthday present.

I had ordered French Onion soup and a Goat cheese and caramelized onion Tart. Cameron had the Squash soup. The tables had white linen, beautifully folded napkins, sparkling glasses, flowers and the ambiance was nice. The waiter gracious and polite.

When the soup came, in a small bowl ($12.00) I didn’t recognize it. I got the waiters attention and asked ‘Is this a classic French onion soup?’ He pointed out that it had stated Creamed’ on the menu. Well, I guess my eyes just ran over that word without recognizing it. In the middle of the ‘cream ‘ soup was a small ball of melted cheese.

Cameron asked me to try his soup. It was bland. Oh! I said, how disappointing. He asked me what I would put in to perk it up. I said, well, a bit of nutmeg, cinnamon and Sea salt. (Starting with a good stock). My soup was bland as well with just a ‘hint’ of caramelized onions. Every seasoning had galloped past the Goat cheese tart. I have no idea how much Cameron paid for the whole thing. We don’t mind paying for food that is GOOD. I don’t have to have that again, any time soon. (I’ll cook it at home.)

After we came home and Jayne went on, I went to the bike shop. I told the owner our problem and he offered to bring his bolt cutters. I told him, we already tried that but he said, HIS bolt cutters were the best. Asked me to come back the next day. I did. He forgot to bring them. He said he would go home at noon and get them and call me. He never did and I was tired seeing his face. 

After Peggie and husband brought me back home, he had brought his bolt cutters. Down we went. The first couple of trying did not produce results. Then, oh, brilliant idea!!! He cut through the ‘plastic’ tumbler part and VOILA!! The bike was liberated.

Last week was my ‘chemo OFF week.’ I was treating my immune system especially well with juicing and eating spinach, etc. Well, the spinach was not a good ida. It has too much vitamin ‘K’ and slowed blood flow more. I MISS my greens but can’t have them right now. Not going to whine about other side effect of chemo. Next week, back for more. (My 4th cycle) Each cycle is 3 chemo’s. (That’s $15.000 each month for only that.) On June 25th, thorough check, lab and CA 125. That’s the one I am really curious about. The ‘cancer marker’ blood test. Asking for good thoughts and a couple of prayers that the numbers have gone down. I am soooo ready to stop chemo.

My hair, inspite of the toxins, wants to grow. I look like I have baby-chick-down. This had better not be permanent.

O.K. Enough rambling. Just so my friends know that I am still kicking.

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??

 

‘Lawd… Lawd have Mercy’.

Before anyone thinks I am making fun, that’s not so. This came to me the other day when I was still hugging the couch.

It was a long time ago, when I first arrived in Long Island, N.Y. as a nanny. After I was there a few months my aunt and uncle came from Munich to visit and we took off to see New York.

It was a hot, sweltering July day. I believe it may have been the 4th because I remember a long Parade with music, drums and everything.  When it was over, the people dispersed and we were thirsty and started to look for a diner or Cafe. Not knowing the area and had no map, we got lost.

We ended up in a very different neighborhood. Not another white person. We were watched and looked at but had no idea why. No one bothered us though.

We came upon a building with multi-colored windows. From inside we could hear a Tamborine and singing. I thought it was a bar. We stepped inside. Right away I noticed that this was not a bar but a church. Filled with Black people. Dressed in their absolute best. Hats, gloves and pretty dresses, the men in somber dark suits. We just stood there, not knowing what to do. The Pastor was saying that someone should start giving ‘Testimony’. My English was still in its infancy, so I was not sure what that meant. Suddenly, a lady got up and started shouting’ :Lawd, Lawd have Mercy!’ She was looking toward the ceiling and lifted her arms, while repeating. (I thought she said ‘Lard’ and couldn’t understand why someone would shout to heaven, to get it.)

My aunt and uncle who spoke no English asked me where we were. Before I could answer, the Pastor waved me forward and greeted us nicely. Asked where we were from and how we found our way to their church. I told him that we were glad to be there. The congregation gathered around us, talking and smiling and being very friendly. When the service was over, the Pastor walked with us to the edge of Central Park and pointed us to the right direction. We did stop at a diner and had a Cola. We had got lost in Harlem, in the 60’s. It was for us a very nice experience. I still smile when I think of the ‘Lawd’ and hope whatever that Lady wanted, she got.

When I started walking, with the bum leg painful and heavy, I too said ‘Lawd have mercy’.

I couldn’t write anything for awhile as a horrible tragedy happened to a very good, dear friend of ours. Just a few days before his wedding, his Fiance’was murdered by her sick and violent ex-husband. Shot in front of her teenage daughter, in broad daylight, in the parking lot of the dressmaker where they had gone to try on her dress. (He too was shot by Police after he opened fire.)

I was stunned and cannot imagine the grief and sadness over such a senseless act. Instead of the wedding, there was then a funeral. Anything I had to say about my problems, paled immensly in light of so much pain. I was supposed to be there for the wedding and had so looked foreward to a visit and to get to know this beautiful, vibrant lady that our friend had chosen for the ONE in his life. Due to the Thrombosis, I couldn’t go. My son had flown to be ‘best man at the wedding. What does one say? What words can possibly be used? What sense can make someone out of this hellish act? So many people who will miss her. The mom, the daughter, the aunt, the good friend to so many. I’ve cried for days. For her, her daughters, her family and our good friend. From the very beginning when he told me about her, I loved her name– ‘VIOLETA.

For the last few days, the leg has improved. I am doing ‘baby-steps’. I can now walk 3 blocks. In between, I had chemo. The blood test shows that the numbers are down. I am grateful. In 2 weeks I will have a CT scan to check on tumor. I envision that it is ‘dried up’ hanging by a thread, and I can stop having chemo.

Meanwhile, life goes on and my beautiful granddaughter is now 22. My daughter will have a birthday soon and then, it’s my turn. So much has happened in that year. And, we are molded once again by all the  happenings in the tapestry that is Life.

Couchsurfing…

Couchsurfing’ – Travel the world- explore your city and host new friends. Couchsurfing is the world’s largest travel community.

Well now. My couchsurfing has been everything BUT that. I am counting now 16 days, on this rust-terra cotta colored couch. It’s a nice one really. It has big, fluffy back cushions and seats are comfortable. It also sports a Queen size bed. The fabric is micro-suede. Easy to clean, should there be spots.

My day starts early in the morning, since this is when I wake up (thank God.) I take my Levothyroxin and read  another 20 minutes so the pill can work. Then, I go and brew my ONE cup of coffee. It’s nearly a ritual. NO automatic drip pot for me. I boil my water, add 3 scoops of (German mild, non acidic) coffee, a few salt crystals and a ‘breath’ of cocoa. I heat my cup, so the coffee won’t be luke warm when it hits the cup. Just a dash of half and half. That first swallow is sooo good.

See? How much my life has shrunk? Not much happening when you lay on the couch. I bought a big pillow to rest my leg on, which is encased in Ted-hose. Those white stocking that prevent new blood clots from forming.

I can’t stand long, well, not even short time. So, most mornings, I eat Oatmeal or cereal with coconut milk. I try to get dressed, which is not easy to lift that leg to fit into pants. It still seems to weigh 50 lbs. It is still swollen and very tight, and that is the source of the pain.

Now, that I spend those first few minutes on whining, I will also talk about the good things happening. My friends come with food. (I’ve eaten more Kentucky fried chicken the last two weeks, than I have the last 10 years!) But, that’s what my chemo brain wants.

I get home made chicken, potatoe and other soups. I had my favorite Mike come, with family and bring ribs. (Do you all remember that I had NOT eaten meat in nearly 3 years??) Right now, it’s all by the way side. No juicing. Not many salads nor veggies. Chemo has changed my taste buds and I have very little appetite. I still have to have MJ vapors to get ‘hungry’.

I watch T.V. and can’t believe all that mindless crap that’s on. I have read and re-read books. My family calls from Germany and friends and relatives call, so that takes up some time. I watch German T.V. which is some better because it’s not all about killing, blowing up stuff, etc. Sometimes, I wish people had a little more time to spend with me. Like, the length of a movie. But, I am grateful I have so much help and support. My friend Berle is a champion. She cooks and does the vaccuming like a little dynamo. She shops and puts it away and spends time. People do what they can. I am rich beyond measure. My friend Marie came while I was getting chemo and she cleaned house, put fresh, beautiful flowers on the tables and I was so touched and emotional when I came home. My friend Peggie made a late Spaghetti run because my taste buds wouldn’t accept other food.

I never did get Home Health because they don’t ‘help’ . They will give medication, help with bathing but not food or a little cleaning. I only take 1 pill and can bathe, so this is not for me, even though Medicare would pay 100%. But just because I CAN, I won’t squander resources. I thought, they would be the same as in Germany. My dad, brother, cousin all had Home Health and it’s a very efficient, good help with everything. A new, lovely friend is Michelle M. Lives and works in Saudi Arabia. Beautiful, eloquent and so tender hearted. My personal cheerleader.

I want to thank my other friends, who donated money to reduce some of the medical cost. It’s a bit humbling but I so appreciate it.

The other ones are my TEAL sisters. My Ovarian cancer support group. Great ladies. Each batteling her own, tough fight but they’re always there. Supportive. Non Judgmental.

No one has looked at my leg. They say, ‘just keep taking your Warfarin and we’ll see you in 2 weeks.’

I WAS going to go out but a short trip through the kitchen and looking out the window… I see SNOW!! Dang it.  My apricot tree blossoms froze and we’re not sure about the other things I had planted last fall. This is a LONG, cold winter. I am ready to put my toes into some turquoise, mild ocean water. But, that will remain a Fantasy. Bills are coming by the droves and just to tell you: ONE chemo is nearly $5000.00 I have had 9 so far. This is why cancer won’t be ‘cured’ that fast. It is such a money maker.

Just reading this, shows what a boring life it is, right now. I only complained the first week and was very depressed. Mainly, because I did not know what the matter was and have never had anything like that. After that hard week, I decided that I would change my attitude as this would be more beneficial to my mental well being.

I fervently hope, that by next week I can walk. Just normal steps. Nothing huge. Sending out hugs and a heart full of gratitude.