Monday, April 8, 2013

Can't Fix This

The thing that I've had the most difficulty coming to grips with is the permanence of this disease I've contracted. It somewhat washed over me in the beginning. I heard the doctor say it, but didn't let it sink in. It wasn't until I went in for my March oncology visit, with the nurse practitioner instead of the doctor, that it became clear.

She mentioned that I would be taking the Xgeva shot for the rest of my life and it was at that moment that I realized that I had misunderstood things. I had heard them say that the Lupron would be my permanent date, but I thought that the Xgeva was temporary fling, that it would get this crap out of my bones and from that point we would just keep the prostate in check. Apparently I had misunderstood that both parts require permanent bombardment and I hadn't really prepared for that.

Further discussions a few weeks later at NIH further cemented it, but by then it had finally sunk in. Terms like "remission", "cured", and "cancer free" are not to be in my future. I will never lick this thing or "kick cancer's ass", as many have encouraged, unless some new medical miracle comes along in the next few years, this will be with me for the rest of my life. It is something that I will battle until the end and the best that I can hope for it to get it under control and keep it there.

People often ask me what my prognosis is and the fact of the matter is that there isn't one and there won't ever be one. The time that I have left is unknown, like it is for everyone, but it's a little more certain to be shorter than it would have been otherwise. I will never be a former cancer patient. I will have to continue to check my PSA at regular intervals, along with several other tests. I will have to keep my testosterone level suppressed permanently. I'll probably have to get regular bone scans, CT scans, MRIs and who knows what else at regular intervals. I'm getting better, or at least I'm feeling better, but it's possible that I may never feel good enough for extended travel again. I may not be able to visit my family regularly down in Texas and I have no idea what the impact will be on my wife and kids down the road however long that road happens to be.

It also means that I'll have to be more careful with my career as things progress. I've been with my current employer for 10 years and I have no inclination to go elsewhere. I enjoy working there and they have been good to me, especially since all of this has started. They also have really good health coverage, at least for the present. Before, that wasn't much of a concern. I never got sick, rarely went to the doctor, and had no "pre-existing conditions". Now, if I were to consider making a change, I have to take that into consideration. What would the next opportunity offer along that front? What kind of hassles would I have transitioning? I know the new legislation supposedly did away with the pre-existing condition objection, but is that the reality in practice? What if something were to happen to the company? In my current condition, would I be able to start another job? Would I be able to search for one? These are all questions that weren't even a consideration 5 months ago.

OK, fine, it is what it is. I'm stuck with this like a poorly chosen tattoo. I'll have to continue treatment for as long a God allows me to continue walking this earth. It's just a couple of shots, really not that big of a deal, right? Well, then I visited the fine folks down at the National Cancer Institute at NIH where they explained to me that often the hormone therapy that I'm presently on only works for a certain amount of time before the cancer figures out how to get around it, usually about 2 years, at which time I'll have to switch to something else. Apparently in some cases, the cancer, starved of testosterone by the treatment, figures out how to synthesize it's own testosterone to keep going like some kind of perpetual motion engine. Not really something that I wanted to hear.

After my last visit on Monday, they called me back on Thursday to let me know my PSA score from the blood test they took, 1.42. It was back up from the score of 1.09 three weeks earlier. It certainly doesn't sound like that big of a deal to me, as I've heard that PSA can fluctuate, but apparently the fact that it went back up instead of holding steady or continuing to go down and that it moved that amount in only 3 weeks, caused the doctors there at NIH some concern and they would now like me to come back for some further tests and to consider possibly going into a study that they have going on that would be in addition to my current treatment.

One reason for their concern is that there are a lot of unanswered questions like the fact that my second PSA reading from back in February was taken a week after I finished my radiation and since the radiation has some carry over was the downward trend caused by the radiation rather than the treatment? Is this upward change now a movement back toward "normal" as the radiation wears off? I hesitate to say there is an upward trend as we only have only one data point in that direction, but it is a negative change nonetheless. Don't get me wrong, I'm glad that they "caught" this and are concerned about it. I'm scheduled for my next test with my oncologist on May 9th. It will likely come back at some number lower than 3 and my oncologist would have assumed that we have a positive downward trend with three readings of 12, 3 and less than 3 had I never visited NIH. If something truly is amiss, it would not be caught for several months so I'm glad for the extra attention. I just wish the roller coaster would level out for a while.

Whatever the future holds, I'm praying that a breakthrough will be discovered in the meantime while my treatments keep me going. I'm praying for a breakthrough that will allow me to have a prognosis and to be able to use words like "remission", "cure" and "cancer free". I'm praying that somebody can find a way fix this.

No comments:

Post a Comment