My consult at the University of Colorado Cancer Center was well worth the expense of the trip, and yielded information which we did not expect.
I met with Dr. Ross Camidge, the man who is the nation's leader (maybe the world's) in researching treatment for the ALK mutation of non-small cell lung cancers. This was what I presumably have had.
Then again, maybe not.
Dr. C has sound reasons to suspect I have been misdiagnosed. With ALK, I SHOULD have responded much more aggressively to both the infusion maintenance drug I was on for a year AND the oral chemo I have taken for the past 2 years. With ALK, the disease should have responded much more rapidly. Mine has been in a holding pattern, more or less.
He discovered that the tissue which was biopsied (which determined the ALK) was done using a process called staining. The process he uses to do molecular-level testing on tissue is FISH (don't ask me what it stands for), which is the only licensed and standardized way to test this. Non-FISH testing can yield false positives.
I have plenty of emotions about this possibility of being misdiagnosed, but the negative ones do not help me at all. Resentment just breeds anxiety and I will try instead to be grateful that my lung program nurse practitioner pushed me to go see Dr. C in the first place, and that the information may be useful in the present.
After we see what my next PET scan shows (3 weeks), Dr. C would like me to come to Denver for a new biopsy (done through the lung and not the throat as I had here) and the FISH testing which UCCC would do themselves.
If I have an entirely new type of identification for my cancer, he may have some targeted chemo therapies to offer me, depending upon what it is. IF I do, indeed, have ALK, then I am an odd-ball case which does not respond in the way that most people do.
Whatever they find at that point, we then will entertain our options and make decisions. Our faith in God's promises to heal me have not faltered. My cancer, no matter what kind I have, is considered medically incurable, and God is still the only "option" I have for total healing. I do not deviate from that. Somewhere on this very long road named cancer, I believe He will show His hand and remove every trace of disease from my body. My faith will not move from that.
Until that happens, I will continue to ferret out knowledge, all given by God, which I can use.
Dr. Camidge is such a class act, a British man, who inspires great confidence. I will choose to have him "call the shots" from here on, meaning more trips to Denver. UCCC is where I need to be for this lung cancer. They are at the epicenter of the research.
And the funniest moment of the consult? He knew that I had to stop taking Zykadia, one of his drugs, which I have been attempting to take for a month, which was killing me with side effects and stealing my life, and in the end was shooting my liver values off the charts. He looks at me and says, "That Zykadia is the most terrible drug EVER, isn't it?"
I told him how affirming it was to hear that!! He said, "I created it, but nobody is handling it well. Nobody. In two years, it will be off the market." Loved his honesty and humility.
Fortunately, he has at least 3 other drugs in clinical trials for the ALK, and 2 others that are now FDA approved. I do have choices If ALK is my cancer.
Dick and I haven't road-tripped in many many years. We learned we don't have the stamina for the 10-12 hour driving days we used to have. A motel at 4:00 in the afternoon is our speed now. We learned that driving 70 instead of 75 yields a 3-mpg difference in gas. We learned that the best donuts in the entire world are in a dingy little main street bakery in Brush, Colorado, run by a sweet old geezer for the past 22 years. They were 8 inches in diameter and to die for. (And yes, we got off the freeway on the way home to get another one, and oohed and aahed all over again!) We learned that I-80 to Denver is about the most desolate drive on the face of the earth.
We were able to see our niece Anna and her family, husband Tim and the two kiddos, for dinner one night. They live in a northern suburb. They made a wonderful meal and we had a great visit. It was so special to see them and to now be able to picture them in their home and neighborhood.
Thank you all for praying about this consult. Every prayer was answered. God was there, and meeting all of our expectations for the consult and the trip. There was not one flake of snow on any road, miraculous after last week's fiasco across the midwest and upper midwest.
God is good. All the time.