Scalpel, just over the mountain

My son,  Cameron arrived a few days ago in preparation to drive me to Denver and be there during surgery.  We’ve had snowstorms for two days and bitter cold. We only ventured out to get groceries, in case we would be snowed in. (No really.) We took a short walk just to get aired out. The rest of the time, he was busy with work and I was busy with prepping, cooking and freezing meals ahead for our return, when I can not do these things.

My little buddy came to have help with his weekly homework. My friend came to drop her two dogs off. Pumpkin and Max. They absolutely enriched our days. Other than that, nothing exciting going on.

Friday, after noon, I’d asked Cameron to give Julianne, Denver coordinator a call to ask how we’re progressing. Then, suddenly we have a date. After all that waiting, it seemed nearly too fast. As in, ‘oh, I’m not sure if  I’m ready for this!’ But, there it is. THE date. Pre-Op appointment is set for Wednesday, 11:00 o’clock in the morning. Anschutz Cancer Center in Denver. At that point I will find out everything.

This means, getting everything ready and set up for a Tuesday departure for the 5+hr trip. Hopefully, the roads and passes won’t be too stressful to get over. Luckily, we have a place to stay with a very generous lady, who offered her home to both of us.

I am ever so grateful to have my son there, to be my ears and common sense, when my brain turns to mush when I walk through those doors. To ask questions and to champion my cause. I will hang on to my daughter’s words, that I have her heart with me. I’m trying to figure out, how we can have her come, at least for Easter, so we can all be together for a little while. She’s so sad, that she can’t be here but we do understand.

Each time, that I’ve had surgery (meanwhile a few), I’ve had this fear of not waking up from anesthesia. At my surgey, ten years ago, to remove cancerous Ovaries and lymphnodes, I started to cry as I lay there IV in my arm, waiting to be rolled to surgery. My son was with me and asked why I was crying and I said “I am soo afraid of not waking up.’ I did, of course but I also remember the horrible pain.

When I was 8 and half years old, I had a tummy ache. Mom was getting ready to go to work, for a few hours and allowed me to stay in bed. (We had no babysitters those days.) I remember laying on the couch, vomiting vile and bitter stuff. Next day, I was already having delirious dreams. I do remember, vaguely, dreaming of large Gnomes. (Honest to God.)

When the doctor came, he pushed on my large, tautly swollen belly and quickly called an ambulance. I remember seeing neighbors gathered outside the apartment house, to see who was sick and I felt very important. I remember getting a thick- needled shot.

I’ve had ruptured appendicitis. Mom told me later, that it was already touch and go. Someone, meaning well in the most awful sense, had told her not to fret too much as she had three more children.

I remember waking up, in pain and after awhile, I felt overwhelming thirst. I’d asked the nurse for something to drink. I asked for peppermint tea as this was what I’d had at home. She said NO. I asked for something else but she said NO. Never explaining why not. After awhile longer, I just got up and went over to the faucet and drank …water. Lots of it. Well, the hoopla after that was bad. They rushed me somewhere but now I don’t remember what they did. (Pump stomach?) I remember, having this dream. I was walking toward a walled city. Everything was gold. Trees, houses, the river winding around, outside the walls, like a golden ribbon. Not made of Gold but like, evening summer-sun-gold. There was a bridge that I needed to cross to get inside. Suddenly, I heard my name . ‘Inge! I-N-G-E!’ I stopped walking. I woke to see my friend, Irene by the window. Since she was so young, she was not allowed to visit but I am sure that she saved my life, by calling me back.

After a few days without having a bowel movement, the nurse came with an enema bucket and hose contraption. At that time, I did not know what this was.  I had also had developed an abcess. When she tried to insert the hose, the pain was so excrutiating, that I screamed bloody murder and wiggled to get away from that source. Well, this nurse came from Haides Hell. She hauled off and slapped me in the face. Hard.  Then continued to ram this hose in. I sat in bed, sobbing when my mom came. She looked at the marks the 5 fingers left on my cheeks and asked how this happened. She took off. I could hear her shouting all the way. Mama-Bear. She went to the Administrator, she went to the Professor. She cleaned up!! I never saw this nurse again. (My daughter is a lot like her. The protectiveness is alive and well a generation later.)

After about a month, I was released. I needed to recouperate. So it was decided to send me to the country. Plenty of good, fresh air and wholesome meals. This was through the catholic ‘Caritas’. The small village was about 1 hr drive from Erlangen. Set in a very scenic and pretty village surrounded by forests, gentle, sloping hills. They call it the ‘Little Switzerland’. The little house was a kilometer or so, outside the village. Two nuns lived there. In their care was a small orchard with plum, apple and other fruit trees. Then, there was a small, lovely chapel. The ‘Sisters’ themselves were very firm and stern. (I suppose, never having had children, they just didn’t know how to interact.) It was not a good time.

My duty was, to ring the bell to assorted prayers. The length of the prayers, decided how long the bells wer to be rung and why. It all went well until another girl came. Then we both got into trouble because we were just not as pious as they expected of us. When we rang the morning vespers, we got to talking and rang and rang that bell. Village people thought there was a fire and ran outside.

When I was in Germany, several years ago, I asked my cousin to take me there. Pinsberg, fifty years later had not changed much. The village fountain, surrounded by geraniums and other beautiful flowers was the focal point. The houses, more modern and added on, white washed with brown balconies, with many, colorful flower boxes.

The Chapel still the same. Walking inside, the smell of  centuries of francincense. A beautiful, crochet, starched, white cloth on the altar as well as flowers. Even though not used much, it was still lovingly cared for. It was emotional to see myself there, as a child. We had lunch at one of the ‘Gasthaus’ there. It was the best Trout I’ve ever had.

I can safely say, that there won’t be any slapping in Denver.

 

 

A new test, no date.

My days consist of the same, daily routine. I try to walk, depending on this fickle weather which is, at times, too cold, too windy, too muddy. Our regular winter weather. The monotony is only broken by short trips to the Organic store, Post Office and other errands. My light, happy moments come in the form of my little buddy. We do his 4th Grade homework together and then visit.  (Are you smarter than a 5th Grader?) I find 4th Grade Math to be a challenge!! So different and strange from my days.) We’ve been friends for 10 years now. Practically since his birth. He says, we may not be related by blood but certainly by heart. Ahh. He does my my heart good.

I try not to be gone very long as I am waiting for the phone call from Denver. Two days ago, even after careful plotting my time, I came home just in time to hear a voice on the answering machine. Quickly I lifted the phone to my ear and it was Dr. D.’s Assistant.

But, not to give a date for surgery but to request that I call Grand Junction Pavilion, to set up an appointment for a new CT scan. As it turns out, the much lauded (and costly) PET, was an inferior view of the needed tumor position. I was to have this CT a.s.a.p and then the disc FED EX’d to the surgical team.

I immediately called and got an appointment for Thursday morning. Since I was not allowed to have any food nor drink 4 hours prior to the scan, I awoke at 3:45 A.M without an alarm clock. My brain and system at the ready for a fast breakfast as the interval would be very long  until I could have sustenance. And, boy, do I need my sustenance. So. I cooked a bucket of Oatmeal and had a cup of tea and then coffee for good measure. Punctually at 4:30 I ceased shoving anything in.

Outside, the wind rattled and tore at the bare tree limbs. As soon as it was light, the clouds chased each other over the horizon. I really would’ve rather stayed home, on such a day. When I watched the news and weather, the report of strong winds and snow stressed me out.

Punctually at 7:30 A.M my friend Inge B. came to pick me up to drive to Grand Junction and be with me. As so many times before. Never complaining. Never using an excuse of not being able to do this kind deed. Monika had to work, so she had to miss out on this grand adventure.

We arrived early and were shown to the waiting area. There we settled in to wait for whatever would come next. What came next, were two women, who upon seeing me broke out in happy greeting and surprised exclamation. They were from Rangely. I had not seen them, in over 20 years. I said, I recognize you. I just can’t place you. Oh… I know. Rangely, right? You’ve friended me on Facebook, right?

Nancy has been fighting cancer for 12 years now. Has a port inserted in her chest for easier access of whatever needs to be pushed through. Her, daughter, who was in school with my son, faithfully goes with her, each time. Soon, the Radiologist came in with a huge, paper cup and gave each of us the ‘drink’. Gatorade with other tastes. Nasty stuff for so early in the morning. But, dutifully we drank large sips and both of us, making a face and shuttering.

Soon after, I was escorted to the preparation room. Needles, plastic hose for the veine insert. Then, off to the scan room. Siemens machine. Nothing but the finest. Laying down on the gourney-bed, I looked up and saw two panels with azure sky and white, puffy clouds. Nice touch. PET people don’t have that one. Radiologist comes and shoots the dye into my veine. Just one minute later, a very warm feeling goes through your entire body. This sensation makes one feel, like urinating on oneself. Always worries me, that I accidently would do so. Then, the voice command to ‘inhale’ hold your breath…………. breath. After about 15 minutes we are done. Needle is removed. (Thank God, I have good veines.)

By now it’s after 11:00 A.M and I am starving. Off we go to Apple Bee’s and celebrate with a big salad. Now, we wait, again. Meanwhile, my son is flying in on Tuesday. Everyone getting ready. I am somewhat antsy about the whole thing. Since I am feeling so well, I wonder how I’ll feel, afterwards. I manage to surpress worries and creepy fear during the day. But, the brain won’t be deprived of this ecclectic fodder. I dreamed: I was in the hospital, a day prior to surgery. A very efficient nurse came in, rolling a cart ahead of her.

On this cart was a long line of injections. Needles of various sizes. She looks at me and declares firmly, all these 20 shots need to be given within the next 20 minutes. All in  preparation for the bag you need to wear after surgery. I woke, heart pounding and terrified that this could be a reality.

Nowhere that I can run. I am tethered to the hospital like with an umbilical cord.

I wonder, if my CA 125 has gone down more points, again? I wonder, if that would be enough to stall chemo.

I belong to a closed, Facebook Support group. Women with Ovarian Cancer. Some of them, like me, survivors of previous cancer. Many of them, like me also, have recurrence. They are very researched, knowledgeable about any and every form of chemo and radiation. They comment on their treatment. They comment on their hugely, elevated CA 125 (Blood test) numbers. Into the Thousands!! One lady’s numbers have gone up to 9000!!! The whole, horrible misery of this disease. Their cancer, unlike mine, goes rampant, aggressive and very fast. It’s in their liver, colon, lung, pancreas and other terminal places. They fear for their very lives and some, have lost the battle and their sons, daughters or other family member will post of their passing. The raw pain of their grief is more than I can bear.

I’ve decided, not to go to this site, for awhile. This is too scary and too close for comfort. I don’t want to have their painful echo and terror in my brain. I feel much compassion but this sucks energy and positivity from me. I fervently hope that they survive.

Meanwhile. I am continuing on my course. Healthful meals. Walks. Tumeric and Curcumin. I have added Black Raspberries and lemon loaded water (Alkalizing). Maybe just pitiful attempts to ward off the beast. But, so far, I have. I have done amazingly well and I’m holding on to that with all my might.

Cabin Fever…

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.

 

More ‘what- for’

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.

Odd message

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.

Flurry of e-mails

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.

 

I had a feeling….

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.

Friday the 13th

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.

‘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.