3.13.14

U2 once sang "Sometimes You Can't Make it On Your Own." I've been determined to prove that false re. my cancer. I've endeavored to assert my will over my cancer, not vice versa.


Control. Perhaps the most difficult thing re. all of this has been the possibility of having to give up control. I've mentioned over and over the frustration of not being able to control what is going on within my own body, and that is something I likely will never adequately accept. I do have the utmost faith and confidence in the care and choices that my oncologist has presented me with; I trust in her judgment implicitly. But as much as I cannot control the cancer itself I can control what I wish to do about it, how I wish to have it treated. Those are ultimately my decisions, my choices, ultimately it is up to me to control what I wish to do in terms of treatment.


Similarly I have not wanted to give up control over myself, become dependent upon others. I have had so many good- no, great- people offer me all sorts of assistance and support, be it driving me to treatment and other doc appointments (or giving me public ridicule- always welcomed!) offering to visit me while I've been undergoing treatment, etc... offering to allow me to vent. I appreciate these, much more than you folks know. The offers are truly touching, and humbling. But from the get-go with this one thing I've been determined more than anything else not to do is to be a burden upon nor a bother to anyone. Besides the fact that many people have significant issues in their own lives to deal with and overcome- ideally I'd like to be the one who is there for them, I'm far more comfortable in that role- I also do not feel comfortable giving up that sense of control over myself that comes from letting others do too much for me. Again, I do not- can not?- want to be a burden or a bother to anyone, nor dependent upon anyone. I'm more comfortable being there for others, in whatever way/s I can.


Lastly, and not to be morbid as- hopefully!- this choice is still quite a ways off but when that time inevitably comes when things take that last turn for the worse, I will control, it will be my choice, how to handle the end game. I'll make that choice, I will not let cancer make it for me.
The ultimate control.

3.07.14

I believe I had mentioned that my oncologist and I had decided to embark upon participation in a phase 1 clinical trial for my cancer (the particulars can be found at this link for those interested: A First in Man Trial for Patients With Cancer.) In preparation for/to determine if I was physically eligible to participate I had a series of tests done this past Wednesday (lab work, ECG, chest x-ray, CT scan, PT scan- a lot of radiation!) I received the results earlier today. The lab work showed some increase in liver function #'s as well as CEA but not significantly changed from the previous sets of labs done about a month ago, and the increases were consistent with having been off of treatment for a month+ (to participate in a trial they also have to let previous meds completely exit the body, hence my month of non-treatment.) My oncologist didn't seems especially concerned with the #'s, again, given my time off from treatment as well as trending we had seen, and the fact that this has been going on for almost three years now. Somewhat more troubling were the results of the x-ray and scans; the x-ray indicated some- small- nodules within my lungs, which was/is something new. The CT scan showed that the existing tumors on my liver had increased somewhat in size (in and of itself not especially worrisome, again, due to time off from treatment, trending, and how far along I am into all of this) but also showed a tumor on my spleen, which is something else new and previously undetected. The PT scan confirmed that the areas on both my liver and spleen where the tumors were seen are more metabolically active than other areas (it didn't detect that re. the lungs, which could indicate that they may not be cancerous, or are simply so small as to not show up.) None of these findings affect my eligibility for the trial; I begin that this coming Wednesday. What they do indicate is that things do appear to be progressing, which obviously isn't great news. While concerned my oncologist believes that, given where I am so far (organ function hasn't been adversely impacted yet) and how I'm feeling overall (still damn good!) we ought to be able to manage things for awhile yet- several months at least- but likely not years (plural.) She didn't give me the equivalent of the two-minute warning!


Honestly, I was anticipating worse news than I received. I've had some aches (nagging more than limiting) recently and was concerned that there might be massive spread, organ failure, who knows what. And as I was telling a good friend just this morning, for me the worst part is the not knowing, the waiting, the uncertainty; good or not-so-good I can manage and deal, I can handle that, but being left hanging, uncertainty, those things drive me batshit crazy, so I was appreciative that my onc gave me the results in a timely manner.


So I move on. I'll see what, if any, benefits accrue from the investigational drug I'll be starting next week. There are still one or two things beyond that to go to as well. The damnedest thing is, minor aches aside, how well I still feel physically- hit the treadmill for a run this am, got back from the gym a little while ago, have good energy, appetite, etc... And I'm fully aware that there are a LOT of people who have health issues- hell, issues of all sorts- to deal with in their lives, many of them far more challenging than anything on my plate. I have admiration for and gain strength from them, seeing how they deal, and it fills me with gratitude that my issues are manageable.


And damn... will this winter ever end?! It has been way too cold for way too long- I want a cold drink (or several!) on a hot beach!