TBI

I was at the hospital yesterday for a long planning session with the folks of the BMT, the Blood and Marrow Transplant program (BMT, not just a Subway sandwich anymore).

They seem to be a kind, dedicated and committed bunch, which is encouraging, and the meeting was informative, if slightly horrifying. I'll be back there next week to meet the radiation oncologist and to do some dry runs of the actual irradiation process, partly to get some measurements and partly to keep me from freaking the hell out when they drop me into the microwave for the real thing.

Our euphemistic initialism of the day was TBI -- total body irradiation. I will get a lot of TBI. GFY, TBI.

I'm frequently asked why I would be given both chemotherapy AND radiation for this -- it seems like overkill. Yes, but I suppose overkill is the idea. The reason for this conditioning regimen is twofold: to kill any remaining cancer, and to suppress my immune system to let the new one take hold. The radiation, a high-energy x-ray, is on occasion very effective against lymphoma and gets into the darker nooks and crannies of the human system that chemotherapy sometimes does not reach. Like your brain. Or your nuts. Of course, THE EXACT TWO PLACES I DON'T WANT RADIATION. I'll get six blasts over the three days preceding the transplant.

I might have mentioned this before, and forgive me for dwelling, but it comes with some charming possible side-effects: nausea, mouth sores, diarrhea, swollen and painful salivary glands, rashes, itching, cataracts, fatigue, hair loss, sterility, mild burns inside and out, secondary cancers, etc. Not so different from the chemo, or living in Chernobyl.

As a bonus, though, I might also actually pick up a tan from this, which is always a positive in Ottawa in November.

I also got the details on the cocktail of immunosuppressants I'll be receiving to keep my new immune system from waking up too quickly and rejecting the various vital organs I rather rely on: methotrexate and antithymocyte globulin.

I'll get the standard package of antinauseants (zofran) and steroids (decadron, or trimspa as I've come to know it), plus an assortment of other meds that could include neulasta (to stimulate white blood cells), ativan and maxeran (to chill me out if I need, I guess), eprex (to encourage red blood cells), hydromorphone (drugstore heroin for pain), benadryl (for the various allergic reactions to various things), stemetil and haldol (apparently in case I get twitchy...is that really a risk?), antibiotics (trimethoprim/sulfamethoxazole), antivirals (acyclovir), and antifungals (fluconazole, nystatin). Yes, antifungals. It's a thing. I am singlehandedly supporting an entire sector of the economy. Between the whole pharmacy I'll be eating every day and the radiation, something is bound to give me superpowers. I just hope they're useful, and not like Aquaman's.

I'll take part in some research along the way, because why not. I'll be a test subject to help assess when it's most advantageous to provide blood transfusions to address low hemoglobin levels (a side effect of the chemo and radiation). I'll also be wearing a heartrate and breathing monitor to see if there are earlier ways to identify the onset of infection. Because apart from the cancer itself coming back, infection remains the biggest risk in this process. Identifying infection early and treating it quickly with antibiotics is key.

Oddly enough, the biggest risk of infection comes from, of all places, me. Since the gut lining gets thinned out and damaged by the preconditioning, there's a chance the nasty bacteria in my gut gets into my blood stream.

Infection risk also means that after October 26th there will be no takeout for a while, no delivery, no restaurants, no fresh fruit, no raw vegetables, no unpasteurized or moldy cheeses, no unpasteurized honey, no more questionable basement charcuterie, no rare meats, and sadly, still no sushi. Fuck you, cancer.

Many have called me fat-headed...

When is it awesome to have an infection?

Right, well, never. But when your head swells to the size of a pumpkin and you think cancer has returned to send your lymph nodes into overdrive again, hearing your doctor say "this is weird, but it doesn't look like the lymphoma and is probably just an infection," is just such sweet music to the ears.

This all started about 10 ten days ago. It was a lovely Sunday afternoon, and I was just relaxing, being myself. 

Then by about 10PM I noticed my head was growing and I seemed to be transforming into the great John Lovitz.

And within about 24 hours I was looking like an orangutan extra from the Planet of the Apes.

My head had become alarmingly huge (okay, huger than normal). I've had weird allergic reactions to random things before, so perhaps this wouldn't usually warrant a great panic. But it felt like my lymph nodes were swelling, taking me back to the worst days of the cancer when the lumps in my neck and jaw were visible from Mars. So I'd be lying if I said the first thought I had wasn't: "fuck, the cancer is back, and just when I'm so close to getting my transplant."

The secondary concern was that my throat was slowly closing. Swallowing was getting very, very difficult. I can survive, however unhappily, without food for a couple of days, but I'm far less adept at surviving without air. Thankfully it didn't come to that.

After some steroids to reduce the swelling and some emergency CT scans the docs were able to give me some reassurances, though qualified, that my cancer was probably not active. Instead, infection became the chief suspect. Relief.

After a second flare-up following some smoked fish for dinner a couple of days ago, it seems that allergic reaction to certain fish is actually now at the top of the list of probable causes. As it turns out, I'd eaten fish when the whole thing started as well. I've never had a fish allergy before - quite the opposite in fact, as I love all the tasty fishes in the sea  -- but chemo can do very weird things to the immune system, including both eliminating existing allergies and crafting surprising new ones for you. 

Hopefully after the stem cell transplant I get a whole different set of allergies and can go back to eating fish. I can live without chocolate and swiss chard. Just leave me everything else.

Give 'im the gas!

Just before that all started, the hospital ran a few tests on me to make sure my heart and lungs could withstand the rigors of the chemotherapy and radiation that will precede my stem cell transplant. I've had many odd sensations since this whole this started, and I can add to those the opportunity I had to watch my own heart beat via echocardiogram.  

After that, they locked me in something that can only be described as gas chamber-like, and tested my pulmonary functions. 

Happy to report that the heart and lungs are strong like a horse's, which I'll say I'm a little proud of given that they both took a beating from the lymphoma. I had a tube in that fucking lung two months ago.


Transplant News

Finally, I've got transplant news. 

Looks like on October 26th I will begin the preconditioning phase of the transplant process. 

That means two days of intense chemotherapy, which will apparently be far worse than I've had so far. 

That's followed by three days of full body radiation, which I've not yet had. 

Then I receive the transplant itself on October 31, which is itself actually the easiest of the procedures. 

That's followed by a month or two of extreme infection control and daily hospital visits to monitor my status (they really want me to do this as an outpatient, which just doesn't seem like a great idea). Then I get to slowly re-expose myself to the world and build my new immunities over the subsequent months.

I'm looking forward to finally getting it done... but I am not looking forward to it. Needless to say, November will be an unpleasant month. I've seen this movie before. Nausea. Fatigue. Full body pain. Leaving a trail of dead skin a meter wide everywhere I go. Skin feeling like it will tear every time I move. Not being able to eat. Not seeing people. Not being able to play with the kids. Plus, the charming new experience of radiation burns, on the inside as well as the outside. 

The odds of this whole thing being a success are less than I thought, and unfortunately, far less than I'd hoped for. 

But as high risk as it is, it's a chance to be rid of cancer. It's one not everyone gets. And we take what opportunities we get and make the best of them.