A good friend recently pointed out to me that if there is one silver lining to the cancer adventure, it's that I've had the opportunity to connect and re-connect with friends like never before. It's true. People talk about how some friends start to avoid them when they get sick, and I'm thankful that I've experienced the opposite. I'm very lucky to have great friends that want to hang out with me despite my deathly pallor and stories of lung catheters.
Also, I am thinner, less hirsute, and seemingly no longer allergic to blueberries.
Plus, waiting for my CT scan yesterday I got to catch up on my reading with this gem, the June 1993 issue of the official magazine of Star Trek: Deep Space Nine.
Sure, Major Kira was kind of foxy and all, but come on... Nineteen Ninety fuckin' Three! That's older than OK Computer. Kurt Cobain was alive when this was published. I've hired students younger than this magazine. Folks, don't just donate your stem cells, donate some magazines to the Ottawa Hospital, general campus.
And, finally, I got some unexpected good news from my GP today. I wasn't supposed to get my CT results yet, but she got two of my three scans back (abdomen and pelvis, chest will come in next week). It turns out that my giant spleen has shrunk, my pancreas is showing "no residual measurable disease", and, at least as far as my abdomen goes, I'm showing "significant improvement and treatment response". There's "near total resolution" regarding my lymphatic system and "no newly developed lymphomatous involvement of the abdomen and pelvis". Some of that reads like gibberish, but the bottom line is that things on the inside are even better than I'd dared to hope for, and this gives the stem cell transplant a better chance of success. I hope the rest of the scan shows the same.
I will celebrate by demolishing some pizza. Yes, I've already abandoned the ketogenic diet after just two weeks. Something to do with the lack of peer reviewed research, no real positive case studies, and an absence of pizza in my life...
That's it. People tell me my blog is a downer so I'm just sharing my glass half full kind of day.
For a guy with nothing to do, things have been a bit busy. There's my excuse for the lack of updates lately.
I'd love to report that I can no longer feel any swollen lymph nodes on my body, but the last of them just refuses to go away. I mean, it's still not growing, and hey, it does seem to be the last one, so I shouldn't complain. But it might have adopted some of my stubbornness. My next CT scan is in a couple of days and it will tell me the full story of what's happening on the inside. I'm pain-free, have for a while been absent the stabbing sensations in my lower spine, and am exercising again, which is all good. So hopefully the scan just confirms what I'm feeling.
From what I can tell the magical Brentuximab is still working. I wish it was a first line treatment for this kind of cancer so folks could avoid going through painful chemos that are unlikely to work, but I suppose the $10k per dose price tag of the brentuximab relegates it to an option of last resort. Hopefully that all changes once the medical community is able to study the drug's effects in the longer term (and hopefully I don't grow any horns or tails from it).
Brentuximab works like a smart bomb, targetting very specific proteins that exist in tumour cells and dropping a toxic payload after it binds to them. Meanwhile, it wreaks (relatively) little havoc on the rest of my body. Contrast this with the first two chemotherapies I tried, which were less targetted and more like a napalm carpetbombing that obliterated a whole host of cells, tissues and processes in my body (my fingernails still look like they belong to something that crawled out of a swamp this morning).
I had my fourth treatment of the Brentuximab a few days ago. It wiped out my energy for a few days this time, and I've got a tingling sensation in my toes and in a couple of fingers. That's not uncommon, but considering the alternative it's a small price to pay. If the numbness spreads the hospital will cut my dosage back in order to prevent any permanent nerve damage, but I say full speed ahead. I won't need fingers and toes if I'm dead.
That said, my hematologist thinks that might've been my last treatment anyway. The stem cell transplant team at the Ottawa Hospital has apparently found some closely matched donors for me on the international registry -- not 100% matches, but matching in 7 out of 8 HLA markers. Those are human leukocyte antigens: proteins in cells that your immune system can use to determine if cells belong or need to be rejected. In a transplant situation, a patient's HLA markers are compared with a donor's, and if 8 out of 8 markers or 10 out of 10 match, it's perfect. The better the match, the less likely you are to face a risky graft-vs-host rejection situation (although sometimes that can actually be good in terms of the new immune system rejecting any remaining cancer). So it is slightly disappointing to not have a perfect match, but as some people don't find matches at all I'll consider this lucky. I think the individual donors still need to be contacted to make sure they remain healthy and willing, so it's not a done deal yet, but things seem to be on track for an October transplant. I'll find out more about the plan next week.
Bethematch.org has a good description of this stuff. Once again, I'd encourage everyone to check it out or the Canadian equivalent at onematch.ca and consider being a donor. Think about it: Brentuximab is likely not a cure, just a temporary treatment, so this transplant might be my one shot at a permanent cure for this disease, and out of millions of people on the registry there are as few as two matches for me - two people who don't know me, but who have signed up for this regardless. You might be the one match for someone else out there.
They won't tell me where the possible donors are from -- they like to tell everyone "they're from Cleveland." I might have the option after a year or so to find out. I wonder how much it costs to send a case of beer overseas.
What else is new? Well, it's been a few weeks since I got my lung catheter removed, and I couldn't be happier. I no longer have to sleep with something that feels like a spoon jammed in my back. Showering is once again pleasant and my lungs remain clear. I'll spare you the story of its removal, but it did involve a not-so-awesome (but kind of awesome-in-hindsight) kurosawa-esque splash of blood.
Finally, I saw a naturopath last week. I had some reservations going in. Given the effectiveness of my current pharmaceutical experience I don't fully buy in to the benefits of alternative treatments, especially considering the junk science around cancer and nutrition that pollutes the internet. Nevertheless, it was a positive meeting. I learned a bit about the functioning of my body and how healthy and unhealthy cell growth works. After some discussion, he has me trying out the ketogenic diet which has (apparently) shown (supposedly) good results in (maybe) limiting cancer growth by limiting glucose levels and the development of "insulinlike growth factor 1", or IGF-1, which is an important hormone to support growth. Unfortunately, it also is key to tumour growth. So yeah, I'm basically on a low-carb, adequate-protein diet. I'm not really confident that this will have any impact on the cancer, and there seems to be no peer reviewed research on it, and it's kind of counterintuitive, but A) I feel good and B) it can't really hurt at this point.
But, my new hobby, baking bread, was ill-timed.
I'm realizing that most of the "keto" community on the internet has absolutely no idea what good food should taste like, so I might have to start putting some recipes on here.
If I die during the transplant having spent the last month of my life eating this low carb garbage instead of pizza and focaccia, I'll be very upset.
