[cancer] Still here, still overwhelmed
Some basic nutrition and lifestyle issues got in the way of well, everything. They still are, but things get better. I had a major rebalancing of my medications, which has made me even more listless and goofy but has restored (more or less) my ability to eat.
Tomorrow I have CT and MRI appointments at NIH. I never mind CTs, but MRIs are the soul of tedium.
Tuesday morning I have a follow up apheresis appointment, my last I believe, then in the afternoon I see my NIH doctors in clinic for an initial analysis of the trial results.
We already know this won’t be a full and final declaration of whether the trial was a success or not and my status going forward. There are number of possible data artefacts both positive and negative. But we hope to get a trend. I’ll come back in mid-May where we should nail it down better.
My anxieties are easy to imagine, though mostly masked by the medication right now. Sorry to be so low-bandwidth, it’s very hard to focus lately.
Posted: 1:55 pm Sun April 13 2014 | Comments(10) |
[cancer] Which way am I going?
Just had another slo-mo meltdown with the gracious Lisa. I am having a very hard time.
Part of the problem right now is we can’t tell which direction I’m going in. Most of my current health issues (other than the food, which is both dominant and a special case of conditioning and attempts at deconditioning) could point to either me slipping further into my terminal decline, or to me responding to the recent experimental immunotherapy protocol. Or both. And we won’t know for sure until mid-May, though it’s possible negative evidence will emerge in my consultations on 4/14 and 4/15.
So, yeah. Am I living or dying? What does all this exhaustion mean? How tired can one human being be?
Hence the lack of blogging and email. Fragile hope is under great duress, and my energy levels are similar to late chemo after six months of treatment. And we just don’t know…
Posted: 10:10 am Fri April 04 2014 | Comments(16) |
[cancer] Still alive, still low bandwidth
Because people keep asking, I am still very low bandwidth on email and social media as explained before. Lisa updates here. I’ll be back when I can focus.
Posted: 4:31 am Fri April 04 2014 | Comments(2) |
[cancer] Quick update re email, comments and social media
As recently discussed here, both my body and my mind are fully occupied with some fairly serious food issues, post-treatment. As such, I am very dilatory about responding to email, blog comments or social media chatter. My apologies. When I am back to full functioning in body and mind, I’ll return to my usual online response times.
Posted: 10:35 am Mon March 31 2014 | Comments(6) |
[cancer|food] How I spend my days
The lead suit slowly improves. So does the giant clamp on my brain. The problem is and continues to be food.
The protocol I was on at NIH had the incidental effect of deconditioning me from being able to eat. Right now we spend most of my waking hours preparing me to eat, tricking me into eating, calming me down when I react to food, and planning how I will eat.
It is a freaking misery. Everything is about food right now, and not in a fun way. I feel ill at my stomach most of the time. And hardly anything works.
This is one reason I have not resumed regular blogging. My entire life right now is focused around managing enough food intake to try to switch from a starvation metabolism to a fat metabolism. You have no idea how all-consuming that can be. Not to mention miserable.
Posted: 4:30 am Sun March 30 2014 | Comments(9) |
[cancer] Struggling with the lead suit, body and mind
I continue to not return email and avoid online chat. This is not a permanent state of affairs, but it will continue for a few days yet. I plead for continued amnesty.
My body continues to be a lead suit, albeit with a few of the plates falling off. This is much like emerging from the back end of months of chemotherapy. That’s not the hard part.
The hard part is the lead suit which encloses my mind. I can still barely single-task. My usual level of everyday multitasking feels like a moonshot project. Focus is a stone bitch. The medications I received on this protocol kicked my mind hard, and I’m still not up off the mat.
Which is scary and sad and difficult to cope with. Especially while the meat-and-and-bone part of me is also so afflicted with lead. I’m trying hard. I’m coming back, I swear. But each step is like climbing a mountain.
Posted: 4:24 am Fri March 28 2014 | Comments(11) |
[cancer|personal] Slowly coming back
That was easily the most brutal medical experience of my life. This I say from a life well populated with brutal medical experiences these past six years.
I’m so physically deconditioned from three weeks in bed and some deeply weird medications that just walking around feels like I’m wearing a lead suit. My thoughts are still slow and single focused and erratic, hence the lack of blogging. But I am back, and I am working my way up.
Hopefully this blog will resume its normal schedule sometime in the next few days. I’ll try to blog retroactively about my experiences on the study protocol, though frankly some of them are already lost to medication haze.
At any rate, it’s me, and I am here once more.
Posted: 2:16 am Thu March 27 2014 | Comments(20) |
[NIH Day 15]
Buy here but winding down now int recovery period. I’m still fat fingering most f what I try to type. This post absolutely included.
Friday midday I received 43.3 billion of my TIL cells infused back to me. A while raft of helper drugs came with, notably IL-2. I lasted 4 doses of iL-2, and was willing to tolerate more, but the doctors thought I was already at risk of serious lung and kidney issues from drug.
More to come I have it, not to mention recovering some of my writing skills. This post took over 30 minutes to compose on a full sized keyboard. Ah, cancer.
Posted: 2:48 am Sun March 16 2014 | Comments(7) |
[cancer] NIH Day 10
Getting overwhelmed fast here. Yesterday was busy and spoon-burning both. An hour of deep science talk with Dr. Tranh about how the genetic selection of my TIL cells was done, and why, was sort of like a Masters degree in a bottle. I will report that when I can. (Notes were taken.) A 75-minute EMDR session to deal with my aggressive emergent food aversion gifted unto me by the cyclophosphamide. Likewise to be described. The massage therapist turning up. And the intensity of treatment dialing up sharply last night, half a day ahead of what I had expected.
Oddly, I got a good nights sleep.
The dance begins in earnest at noon today, with the TIL cell infusion. I do not expect to be able to blog or function on social media effectively after today for a while. I will either be silent, or possibly have Lisa make posts if need be. Expect erratic posting until further notice.
Posted: 4:04 am Fri March 14 2014 | Comments(12) |
[cancer] NIH Day 9
Yesterday was a weird day. Very tough in some ways, easy in others. I was quite discouraged to jump from a one-hour infusion to about six hours of infusion due to reduced electrolytes, but since I have been eating almost nothing, well, duh, I guess. It was supposed to be sort of a day off.
The food aversion problem continues to get a little better, but not soon enough. And I accidentally gave myself a setback. Also, spoke at length to the EMDR specialist here, who is going to start working with me today to see about reconditioning me back to being able to take solids and fluids by mouth easily. Right now it’s very tough, a result of last weekend’s cyclophosphamide infusion being so terribly hard on my upper GI. I’m pretty sure Dad was fascinated by the EMDR guy and the intake process, which he witnessed almost all of.
Also, a rocking rash all over my chest from the adhesives in the dressing. I tell people and tell people I react to medical adhesives. but nobody ever does anything until after the problem presents. This happens with every new clinical. Sort of like my eternal conversation about why I really, really don’t tolerate opiates well, and no, I’m not crying “wolf”.
I walked outside the ward more, which was as much about boredom as anything else. Various of us had some good chats, but I’m mostly too unfocused to read or watch Netflix or hop on the phone.
Meanwhile, this morning was the last of my kamikaze chemo sessions. One of the doctors reluctantly confirmed that the cyclophosphamide which knocked me back so hard was basically mustard gas. That gave me a whole new perspective on WWI, I can tell you. I start the TIL infusions tomorrow around noon, and the IL-2 infusions tomorrow evening.
I am still afraid.
Posted: 4:25 am Thu March 13 2014 | Comments(6) |
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