The days drag on with no news of surgery date. Everyone is in limbo. Both of my computers had crashed with serious ‘Trojan’ virus and so I was without any communication for several days. When I went to pick up my little Notebook and didn’t have enough money, we agreed to barter. One Applestrudel for the remainder of the debt.

When I came home, last week from running errands, there was a crate at my door step. Filled with fresh vegetables. Carrots, Root of celery, egg plant, Mango, Apples, etc. The attached note read: Thinking of you, with Love. Your Friends. I was very touched and so grateful. These medical bill are leaving a big hole in already meager finances. It’s so heart warming that some people recognize the need without my having to spell it out. It’s a very difficult thing, to accept help. Since there is no date, I can’t even schedule cooking classes. By the time we’d get the word out and bring people together, it may have to be cancelled because of the trip to Denver. I really, really want to work.

Some friends have been with me through the last cancer journey. One, in particular. My friend Bonnie. Every time I had chemo, she was there all day, next to me, sitting on this hard chair. She had worked through her lunch hour, each day the week before chemo, so she could spend that day with me.

Yesterday, the trio went to Grand Junction. Inge B. drove and Monika texted and I sang along some German songs. We arrived ahead of the appointed time. I really am a very punctual person. That being one of my ‘virtues’.

I filled out the 3 page in-take form. (Should just have one copied and pass it out.)

Then, the nurse called my name and off we went to the exmination room. She sprayed my throat with very bitter stuff and thus I waited. Doctor came in with a smile, shook hands and chatted a bit. He then ran a thin scope with a small pin light through my nose, down  the throat. It was just a bit uncomfortable but otherwise bearable. Then, the other nostril. Declared that I was doing great and that there was absolutely nothing to worry about. Not sure why the PET lit up. (Medicare does not pay for Consult. So this was on me.) But, to hear news like that, I will eat beans for the next week.

Professor wrote an e-mail and wanted to know what they decided to do with me… and why the wait? He also told me, that when he looked at the latest PET scan, he saw a slight tumor reduction. No one had told me that. I was very happy. Even ‘slight’ reduction  is ever so much better than growth. It shows and is proof that what I am doing and all of this hard work is paying off. Let the doubters doubt. They cannot dissuade me.

The next day I went about my business when the phone rang. It was my doc. He chastised me, once again and I answered the thoughts I’d had, yesterday.

Before I could launch into the financial aspects, he told me to ‘get on with it as he was in between patients’. I think, that was the last straw. I am looking for a new doc. Had enough of this verbal abuse, for which I am paying. Not much… after all it’s only Medicare but still, I am employing him.

It reminded me, when I was married, to ‘what’s his-name’. He was perfect in the art of verbal abuse. I remember one incident, now rather comical. He was reading something to me while having breakfast. So this was the sentence;’ This fakuhd had interesting structures.’

I asked, ‘fahkud?’ I don’t know what that is. ‘What!?” he yells, you don’t even know what a fahkud is? You always want to be so clever! Puzzled over this outburst, I said, no, I’m sorry, this is a word I’ve never heard, would you show it to me, please?  He did and it was ‘facade’.  Meaning: front. Spelled the French way with the accent under the c. “Oh’, I’d exclaimed, delighted, that indeed, I did recognize the word, ‘you mean ‘Fassade’, pronouncing it the proper way.

Before I knew what was happening, he picked up his cup and threw it against the sink.  I was not allowed to be intelligent. He couldn’t handle it. He was throwing a whole, complete hissy-fit. (I’ve been divorced for many years.)

The rest of the day was spend in self created harmony. Feeding the birds and listening to their excited chatter, when saw me approaching the feeder. A walk by the river, azure sky and sun on my face.

I’d called Denver camp and they promised that Dr. D’s nurse would get back to me She did. Could not give me result of PET since Dr. D said, that she didn’t have the Radiologist there to interpret. My scan and case history would come before the board, this Thursday, to be discussed and then I would get their recommendations.

I’ve also made an appointment with ENT docs in Grand Junction. Another red flag for my doc,  as he questioned why I wouldn’t go to local. I didn’t have time to explain, how that one missed the whole symptoms and only diagnosed ‘increase mucus production’, when it was the cellular changes of lung cancer. Why would I go back to him??

Fenruary 15th is my appointment. I really don’t think, it’s anything to worry about. This is ‘just in case’. A Raiologist and friend of mine, who had looked at the scan, told me he’d never seen anything, that would show cancer, ‘in that area’. This was later confirmed, by the nurse, who said, that Dr. D. noted, she had never, ever seen ovarian cancer end up in the throat. I have no symptoms of anything. (Other than some scratching-tickle, when I had a cold after getting back from New York.)

I got busy baking an apple cake and made myself  a big salad. I’d called my friends, Monika and Inge B. and invited them for Coffee and cake for Saturday afternoon. Cleaned house, ironed and had a good evening.

Saturday, while setting the table with Bavarian China and bright, yellow tulips, the phone rang. Caller I.D. showed doc is calling. I didn’t pick up right away. Didn’t even want to talk with him but then, I didn’t want to have resentment brewing and be so little. I picked up and he gave me the result of our ‘disputed’, un-necessary CA 125 blood test.

SHOUTING FROM THE ROOFTOPS!! My CA 125 has lowerd 7 points. Seven, heavenly points. DOWN. Not the same, not UP but down. My Immune system is fighting like mad to get rid of mutant cell problem. I was elated. I would’ve cleaned the street to earn this money for the cost of test. The boost it gave me, the delight and joy of having my hard work confirmed, my faith substantiated is awesome. You cannot pay for this feeling.

So. What did he say?? ‘Don’t get too excited. You still need surgery.’ Gosh. I am going to find this golden nugget in the med world, who can be supportive and applaud my victories, whether they co-incide with his/her beliefs, or not.

I celebrated with a double amount of carrot/red pepper/celery juice. I had the music on and danced around my living room, singing along, loudly. More endorphins to shake up errant cells. Right now, I am a happy camper.

Thank you, GOD.

Since I’ve not heard from anyone, nor from anywhere, I’ve had to make my own decisions.

No news from Germany, either. (?) But then, they have Sibirian weather there and perhaps the words froze mid -flight in Cyberpsace. Or, it was just too crazy trying to figure it all out.

It has been one month since my last CA 125 blood draw (cancer markers). So, I’ve decided to go to the lab and have one, should Dr. D. (Denver) need that as well. She had been unhappy that I had so few ‘recent’ tests done. After PET disc was send to her, again, it was placed on her desk,  for review on Wednesday or Thursday and then, hopefully a word about decision to me, about yes, no, to do surgery.

Since my doc wasn’t there and I’d done this multiple times before, I just had the draw and left him a note for an order. I had a few more questions for him, as well.

This waiting is really getting on my nerves. Sitting home, waiting for the phone to ring. Just like in (long) days past, waiting for an elusive, unavailable boyfriend to call.

I went to lunch with a new friend. Then, came home to my (boring) vigil by the phone.

I thought to charge my cell phone, as I’d wanted to call my son about questions he had. There I noticed a message. Curious, I accessed my mail box. (Very few people call my cell.) It was my Montrose doc. He said, that I don’t need a CA 125 this time. Wouldn’t matter if it was elevated or, even if it went down as I had to have the surgery. ‘We must  save Medicare money for your surgery,’ he said. And, why would I need a ENT (Ear, Nose and Throat) doctor? That Denver Dr. may not have excellent people skills but she does have excellent surgical skills and to wait.

Perhaps, they think, that since I’ve waited this long, a few weeks won’t matter now.

After I got over the sting and puzzlement, I was glad I wasn’t here to take this call. Here is my side: I’ve paid into Medicare my whole, adult life. It’s not charity. So far, I’ve not been a big burden nor expense to them. Then, if we needed to save, it would’ve been to dismiss the P.E.T scan of $8325.00  (German Professor said, I didn’t need one.)

Doc here also wouldn’t mind, that I use what little money I had and get into debt with charge cards, to go to Germany to have surgery and let them pick up the rest of the tab. Last time, with the cancer rodeo, I had NO insurance and was really crippled financially. Sold everything I had to help along and it was never enough. Cleaned houses and offices while vomiting from effects from chemo and cleaning supplies. Did baby sitting as well just so I would not end up a welfare case.

Friends were helping by leaving cash and checks around, hidden, easy to find but so I wouldn’t have to lose face. In return, I baked and cooked and baked and took these goodies all over town. Some church members, whom I didn’t know, donated $500.00. When I was feeling better, I baked 15 Apple Strudels and took them to their church, the following Sunday.

Then, I paid medical bills each month, for years. The State of Colorado stepped in and paid the rest. I felt very embarrassed.

I’d acted on my doc’s advice to have throat examined due to PET hot spot!

Had they all acted sooner on my symptoms, perhaps I wouldn’t be in this boat!

I was really upset and woke up early from stress dreams. To get rid of these negative emotions, I put  Mozart’s ‘Le Nozze de Figaro’ into stereo with volume up. Baked an Apple cake.

I am ready for when he calls back today.

Since the last 12 days and most them of them without any word from Denver camp nor Montrose, I had Dr. D’s words running incessantly around my head. ‘Maybe we can’t remove this tumor surgically.’ I was in a deep shock. So, how else can it be removed? She did not address this issue. I imagine, perhaps it would be chemo and for good measure, radiation.

I had a call to my doc, here, well, we already went through all of that. I even called again. No answer. I felt totally alone in trying to figure out what to do with this huge problem.

Several e-mails were sent back and forth to Professor in Germany, who was my only link. He replied at once, every time.

I’d sent medical records and scan results. He answered promptly and was concerned, as the tumor had grown and did not see why we had to do another, expensive P.E.T. When I told Professor that Dr. D had stated she ‘may’ not be able to remove tumor, his next e-mail said, ‘if this is so, then to come Wuerzburg. I’ll be here for you.’

Denver co-ordinator had called Thursday afternoon to schedule a P.E.T scan, in Denver, for the following Wednesday morning. I was totally stressed out, how on earth could I manage to get there, again. Who could drive? Where to stay? How to get around? I don’t have unlimited funds. I’d spend over $350.00 on the last, useless trip. I asked, if I could have this done in Grand Junction. I said, I don’t live around the corner and to expect me to come there for a scan and then be told she may not be able to do surgery, was unreasonable. Unless they could tell me, why a P.E.T in Denver was more sophisticated than the one in Grand Junction. (I had called my son while coordinator was conferring with doc and he led me through the mental maze.)

She called back to tell me that this was alright and they’ll set it up. My blood pressure has been really high with all these stressful talks, then e-mails to figure out, if I had to go to Germany, where I could convalesce? How much would that surgery cost?  All my adult life I’d paid into Social Security, to have some help in my ‘old age’. Now, that I was finally old enough for Medicare, I’d have to pay 100% over there? NOT fair. Not fair at all. But, to even have someone offer this kind of help has me very emotional.  In one e-mail, he wrote that he could not open the disc and so could not look at it. But, he was sure he could do surgery.

(Remember? Dr. D. had not looked at it either but cautioned, that she may not.) I’m not giving up on her because she is good. I need good, or, as they said, ‘the best’.

Yesterday morning, my friends, Monika and Inge B. and I, drove to Grand Junction. They’ve been with me, for every P.E.T scan, starting nearly 2 years ago. It had been snowing when we left. For a large part of the way, there was very thick fog. I was so very thankful that I did not have to go to Denver, over those passes. I would’ve stressed out a lot more.

The ladies at the reception recognized me and were glad to see me, although not glad (she said) that I had to be back. The nurse, who inserted the catheder, also remembered me and said, ‘How nice to see you again. You’re just like a breath of fresh air when you come.’ I had to be poked 3x before it my veine finally agreed. She also gave me a large cup of (nasty tasting) thick, contrast. Then, to lay down, resting in the big chair. Curtains drawn all around. You can’t read. You can’t talk. Just laying there. For nearly an hour. That’s such a long time and feels like punishment for me. I’d tried to visualize the tumor hanging in there, dried up. This would be so ideal compared to what I’d be facing.

Finally, bathroom break and then into the room with the big, doughnut shaped, scan machine. At least, they’re not closed in any more, like those narrow coffin-ones they had, even just 2 years ago. Both arms go over the head and are strapped down. Then, mid section is strapped in. (I asked, if this was a straight jacket? Was I in the right place. ha.)

Then, the scan began. Of course, right away, my nose itched. Can’t scratch. Have to lie perfectly still. Then, my eye itched. I’ve tried very hard to ignore all those suddenly, itching body parts. It seemed like a long, long time. Finally the movement to get out of the scan. The nice radiologist, who has done my last 3 scans, assured me that he would give me extra discs, so I would not be anywhere without them. Of course, he can’t tell me what he saw.

My friends were outside waiting and after I received the discs we left. It’s a good place to go and I was not stressed at all. I know, it’s because it’s not so huge and impersonal like Denver University. It’s also because I know these people and they know me.

My doc had finally called Monday eve. He appologized as he was at the hospital all week. He told me all my decisions were really good ones, and ‘right on’ and to involve Professor, as well. He also told me, he would call me at once, today, when he received P.E.T result.

So. Pilgrims. Within a few hours or tomorrow, I should know where to go. Denver or Wuerzburg. My son has agreed to come with me, no matter where I go. My daughter, who has family and can’t leave, is close with support, love and keeping the home front.

( I am selling some ‘stuff’ to finance at least the ticket.) I try not to think about this huge obstacle of money.

After I had some time to rest and think, I became pro-active once more. Gloria from medical records at my local Dr’s called me, to assure me that she did, indeed, send the records. I, in turn assured her that I knew it was not her fault. Since it was a holiday, no one was at the office and I need to wait for my dr. to call. I’m still waiting. She worked on having records transferred on Tuesday as well. (I will bake her a cake.)

Meanwhile: I had send an e-mail to Professor, Dr. Koebe in Wuerzburg. I’ve described what had happend and asked for his advice, as I was really worried how I would get rid of this last cancer tumor.

With efficient speed there was a reply as I checked my e-mail, first thing, yesterday morning. My heart beat a bit faster wondering whether he would say, ‘so sorry but I can’t help you. You live too far away and it’s not my jurisdiction and I wish you well’. Something like that. But, what I saw instead was his reply to their incomptence and failure to communicate. How sorry he was that I had to drive so far for practically nothing.

He offered to look at my scans and surgical records, at the slides from lung surgery, etc.  He wrote, to hold off on expensive P.E.T ($8000.00) until he could view all of my stuff. Then, he wrote, ‘Marion and I are always here for you.’ This simple, caring sentence made me cry. ( Marion is Executive Secretary and a warm, caring woman who has also written uplifting and cheering notes. I was so relieved that there was someone, looking out for me.

I also received a very nice comment/e-mail from a woman, who, as it turned out lives here, in Montrose. She has video’s of alternate treatments which she offered. She is convinced that traditional medicine helped to kill her son. After a few e-mails back and forth, I am invited to her home and we’ll look at this info together. I offered to bring Apple Strudel. Through this blog, I have met the nicest people.

Since Dr. D. (Denver University) had made the remark that ‘it may now be too late to remove tumor through surgery’, I started to research that very subject. (I can’t sit home scared and chew fingernails.) Why did she say this? Because she was cranky that I did not listen to her 20 mos ago? Really small of her. I have the right to look for the best, ost gentle treatment for my immune system. I have done very well until last October, when things started to move and I took immediate action, although it was ‘conventional’ treatment option because I was scared.

I’ve found CRYOABLATION. This treatment was first used in Bejing, China, about 9 years ago. It’s a process that uses extreme cold (cryo) to remove tissue (ablation) as salvage therapy when there is no other way to get to a tumor. It is also minimally invasive. (I’ve heard that one before). It’s injected at the tumor site then substance is released which freezes the tumor and it shrivels up and is ‘dead’. It only costs $26,000.00 plus air fare. Down went my excitement. But, further research showed that they also use this at Dana Faber, Harvard cancer center. My one shot to get into Harvard? 🙂 I will check this out. ‘Just in case’.

I’m also thinking of sending my records to #2 Dr. in Grand Junction. Dr. Giggles had told me that she was Nr. 2 and that Dr. D. was #1. But, just like Avon, maybe Nr.2 tries harder.

Meanwhile, everyone is on hold. My son, my daughter, my friends- me. Not knowing what to do, how to do it or where?

If Professor in Germany could remove it, do I go there?  Would my son come with me? (note to self: ask son.) I could but have to pay myself and who knows how much that would be? Where could I go after surgery for convalescing? It would be so lovely, if I had their insurance and could go to one of those marvelous Wellness Centers. Maybe in the Black Forest? Upper Bavaria? Of course, if it works out that I can stay near home with loving support that would be most ideal.

Laurel, Carrie and I, left January 10th a little late but still in good time to get to Denver. Only had one pit stop in Silverthorn but boy was it frigid! Icy wind blowing and I was worried about the rest of the way, over snow packed passes, icy patches and ever more urgent warning for Trucks to stop and chain up.

Finally made it and stopped at the Marriott right across the Children’s Hospital and next, University of Denver Hospital. Huge buildings and a whole campus with medical facility for each body part.

We checked in and the room was at a ‘patient discount’. Offered Hot Tub, pool weight room and breakfast. The girls took off to check it all out but I had stayed behind, just to rest and get my thoughts in order. Later, we asked at the front desk, where they would recommend that we go for dinner. She mentioned a name, that I already forgot and the shuttle took us over there. At first, I thought it was a double wide with christmas lights still strung up, by the door.

It was an older, ‘established’ Western theme place. I noticed a large, gilded framed painting on the wall as we waited to be seated. It depicted a white cow, sitting up, short horns with a bibb around its neck and long, pink tongue lolling in anticipation of having a ‘good steak’??

I said to the girls, ‘I have this suspicion that they do not serve anything Vegan nor Vegetarian, here.’  They laughed and agreed. We observed the waitress as she went to another table and pronounced that this was a ‘verbal menu’. Rattled off the choices but not the prices. Well, with our turn, I did order Prime rib, baked potato, salad. Recklessly, I even ordered a Margarita but after 2 sips had enough guilt feelings to pass it to Laurel. Carrie and I shared one order of Prime Rib and she opted for her favorite Spaghetti (they serve it with Prime rib?)

Same waitress came to the table with this huge 3 foot peppermill to sprinkle on the salad but in retrospect, this cutesy idea did nothing to excuse the tough meat (and the mediocre spaghetti.)

My one fling before the long ordeal next day and that’s what I got. As we waited for the shuttle, people came to the foyer and looked at the pictures of past rodeo Queens and prize bulls. A whole row of this one, big black bull. Some guy remarked how the owners got quite a long run with this bull. I said, I think, we had him tonight’. The girls just doubled over with laughter, especially after some other patrons asked if our meat was tough?

I said, we should’ve called Gail and ask her where to go. Beds were great and so I had a good night. Woke up at my usual, early time and tried to be very quiet. Fumbled with the coffee maker, in the dark and then re-searched Dr. D. online. It stated that she has 27 years experience, Board certified and has, a generous 5 star rating.

Visiting the Surgeon and Oncologist

I was getting antsy and got ready to go down for breakfast. The girls just opened their eyes at that point. I went down and had some of the Institution scrambled eggs, a gray sausage patty but then felt really guilty and exchanged it for oatmeal. Promptly at 8:00 A.M. the shuttle took us over to the Cancer building. Huge. First appointment wit Dr. Lisa C. Intergrative Medicine.  Her nurse came to take Vitals and remarked at my high blood pressure (168/95) I assured her, that this was only due to the surroundings and that I had very nice, normal numbers. Then, Doctor came and we went to Consultation room. (Girls came with me.) I thought, that this was akin to Alternate but no, that’s not so. Very nice doctor though. She recommended a ND. (Naturopathic Doctor)- Oncologist, in Denver for me to see but the subsequent events made this not possible. She was thrilled that I was already a a good diet, had all my thought process in order, seemed cheerful (not depressed) definitely not a couch potatoe and upon hearing of our camino adventure, exclaimed what an awesome thing to do. She kept saying, that this ND would absolutely ‘love me’ and what an inspiration I was. My blood pressure went down 30 points. She listened to my medical history and then gave me lots helpful material. i.e. Dieticians, Pharmacy, Supplemental advice and assured me, that all of this was free. Part of their program. She’s also a great advocat for Acupuncture.

Then, it was time to see Dr. D. We all went there and, after seeing this big CANCER CENTER sign, I could feel my blood pressure again. Luckily, not quite as high. All that talking helped. More vitals, weight, height. More forms to fill out. Back to Waiting area. I could see Carrie getting pale. Even a little green around the gills. I told her, she would not have to stay. This was not a nice place to spend some hours. But, she insisted on  staying and even going into the room, once more, to listen to all this history, again.

They went out as I was getting ready for exam. There I sat, in the gown, in this bare room, dangling my feet and wishing I was miles away.  Then, Dr. D. came in and greeted me formally and briskly. After examination, she asked her resident for P.E.T scan disc and OP slides from lung surgery. She responded in the negative, as it was not send from Montrose.

She shook her head and was upset and muttered, that ‘heads would roll’. But, she also told me, that now she had doubts, whether this tumor could be removed surgically. WHAT??

Well, it may be too big, she said and since she could not look at it, she had no idea how to proceed. They (Montrose) would need to get her this information, we also need another P.E.T scan, as the one I’ve had in October was too long ago. She said, it was really a shame that I did not have better info.  Denver would now set up a P.E.T appointment, for middle of the week so I would have time and would have to do all these other tests and maybe, pre-operative, if possible. Coming on a Thursday was not a good idea.

My head spun as I tried to take all of that in. I also felt extremely guilty, stupid and ‘wrong’ to have wanted to try to help myself, in a different manner. Like, this is what you get when you go against medical advice. Good one, Dr. D. More to deal with on my full plate.

I was really shaken at that point. I felt the tumor like a monkey on my back, or more so, in my back. This was fast becoming a nightmare. I had psyched myself up, finally, to have surgery and chemo and now, we don’t even know what to do????

Now, I have to wait, again until all these appointments are in place and i’s are dotted and t’s are crossed. I think, I need something to keep me calm. I need to call some of the people, who offered their guest room, in Denver, so I can stay and get those things done. I may need someone here, to help me do all this. I think, this may be more important than having someone here at chemo.  Heck, I don’t even know what’s up.

I felt very much alone, coming home this early morning. Some animal, probably a Racoon? came dashing across the road and I could’ve clipped it. Not sure. At least there  was no thump, or, worse, thump-thump. But it was enought to start me crying all the way home. The dim headlights being swallowed up by the dark road and dark sky. Right now. I am out of ideas, cheery, little remarks, etc.

I am just scared.