Eleventh hour cancellation and more questions..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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One thought on “Eleventh hour cancellation and more questions..

  1. Inge, I can’t even imagine what you are going through. All the ups & downs….decisions, then more decisions. I know you just want that “thing” out of you and I’m praying for you & your family. Stay positive……I’m just sure everything is going to turn out ok. 🙂

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