I think that an update here is far overdue. I’m sorry for not keeping up with this, but over the last ~6 weeks I’ve had little energy or motivation to say much. It has been a major challenge just to keep up with the basics of life.When I got out of the hospital (previous post), I desperately needed and wanted to get some strength and vitality back. I was run down, deconditioned, and generally fragile from the adverse reaction to the chemo protocol that landed me there.
However, being on water / liquid restriction made it very difficult to eat enough to gain much back. The cancer on my adrenal glands had left me with electrolyte imbalance that could have serious implications for my hearts ability to function. So yes, I had to take the liquid restriction seriously. Have you ever tried to down a chicken parm or a subway with little to drink? Meats / proteins start to feel like mulch in your mouth and breads like eating a giant sponge. Soups and protein shakes would be wonderful, but remember, …fluid restriction.
So there was that. Then, the pain in my hips, thighs and pelvis went from bad to excruciating. Brutal. There was no respite; no position or activity or even medicine that would allow me to get some rest. [Yes, this was apparently from bone metastasis returning with a vengeance]. Just in July I was squatting and deadlifting moderate loads with ease and no pain at all. To try even a minute fraction of that (of course I did) would have me paying for it for 12 hours. The meds…A small to moderate dose of some pretty heavy prescription drugs did nothing for me. So we bumped up the dose “to try to get ahead of the pain.” That finally provided some relief. The problem now was that I could barely stay awake to take care of myself, eat, you know… basic activities of daily living. I could literally barely make it to the bathroom from our living room couch due to stiff hips and fatigue. My brief text message responses to friends and family were cut-off, incoherent, and probably quite hilarious given a different context.
It probably wasn’t truly too long of a wait, but it seemed like it. Radiation day! I do not understand how this stuff works, but I laid on the table of Dr. Barron, radiation oncologist, for 30 minutes of various careful (apparently precision) measurements and approximately 45 minutes of “treatment.” A huge high tech looking machine slowly sweeps over you at various angles. You think that you may possibly come out in the future or Jurassic period. The machine moves about like some kind of reiki or something. You see nothing. You feel nothing. Nothing at all.
What kind of placebo is this??I remain completely and utterly shocked that his huge placebo machine completely took the pain away. With one…ONE single treatment?? And my hips which would not straighten out SUDDENLY have full range of motion again??? Serious miracle of miracles, praise God! And thank God for Dr. Barron.
That led to a fiasco of tapering off the heavy meds. No, you don’t go off them as you went on them, I found the hard way. Another 3 or 5 days of near comatose state sleeping all day, but feeling downright miserable from plain old withdrawal. A much more graduated approach advised by the oncologist did the trick. But ugh…
At this point, as you could imagine, my body was weaker than ever. I had not received any -effective- treatment since early July, and now it was early October, and all the above plus an aggressive cancer stealing my body’s resources… The simplest activities were major efforts. I don’t even want to say how low my weight dipped, but I was literally in tears wondering how we are going to “turn the ship around.”And…I missed the far majority of my kids fall soccer season, which of course I love. Sitting in on the chair or couch watching football and soccer on TV constantly, fighting the cold, too frail to journey out much…more tears.
Around 3 weeks ago I began a protocol of two immunotherapy drugs that are supposed to specifically target the cell surface markers of my cancer. I have not yet had a follow-up scan, and it’s early to say, but so far, it seems to be working. There are a number of small but favorable changes in my blood work, including electrolyte levels that would indicate the adrenals and kidneys are better regulating those areas. I’m able to drink (and therefore eat) more and I drive limited distances and I’m completely tapered off all pain meds. My energy levels are up slightly, but I do not know how much to expect this to improve.
Side effects of these immunotherapy drugs are not nearly as harsh as chemotherapy. But fatigue, various skin problems, and shortness of breath are some of the minor side effects that you just suck it up and live with. It is an odd thing to have the form of someone malnourished in the 3rd world and yet feel short of breath (like morbid obesity) and need to stop and breath when you walk up the stairs. So for now, I move slow, yet trying to regain some strength and simply fight off the cold (With such low weight and certain blood levels, I’m always cold). Hey, I’m writing an update here, so that says something in itself!
I would like to comment on how being at such a low point, and just now barely climbing out of it, changes you…more than just mentally. But this is long enough, so perhaps another time. For now I’ll just say that you REALLY reach out for God, and have a different understanding. I would not wish this on anyone, but there are legit and real…benefits? Is it just desperation? It does not matter. In the end, The Lord is really all there is.
Thank you for the continued prayers and meals and various ways of support too numerous to mention. You have blessed Amy and I greatly.