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.