First of all, I hope that everyone reading this that lives in the North East made it through Snowpocalypse Nemo ok. Where I’m at, it was fairly benign. No power loss, no real problems of any kind, and probably about 10″ or so of total accumulation. Nothing really to have worried about. I know that Connecticut and Boston got much more snow, though, so I hope my friends in those places are all ok. So far, reports have been good.
Second, I made it to MSKCC on Friday with a minimum of fuss. We were a little worried about Nemo, but we really just had to deal with some light rain on the way in, and some hail on the way out.
On to the results of the doctor visit!
Blood Test Results, Numbers, and Levels
My blood counts continue to be stellar. Last week, my reticulocyte was very high – 6.5, where the average range is 1-2.5%. This means the baby cords were really working hard on making more red blood cells. Last week, my hemoglobin was hovering in the high 11’s, low 12’s. This week, my hemoglobin was 13.0 – that’s actually at the bottom end of “normal”. Since I never really had a baseline hemoglobin to compare it to, this could actually be what my “normal” was before the leukemia. This is great news – it means my bone marrow is functioning well, despite being on multiple medications that actually suppress your blood counts. As Dr. Barker put it when I was still in the hospital “This baby has balls”.
My white blood cell count continues to bounce around between 5.5 and 6.5, which is again, well within “normal” boundaries. My neutrophil count is generally around 4, which is awesome. If not for the immuno-suppressant drugs that I’m on, these numbers would be enough that I could lead a normal life. Unfortunately, I’m still on my restricted diet and restricted visiting people …er… restrictions until I get off the anti GVHD meds. Which won’t be for a while.
My platelets are continually above 100,000, though they still haven’t reached “normal” levels (which range from 190,000 up to 450,000). The upside here, though, is that since my platelets have stabilized at such a high number, I’ve finally been allowed to take my imitrex and excedrin to deal with my headaches (more on this in a little bit). I can’t even begin to explain how nice it is not to have to try to use Dilaudid to deal with a headache. It’s amazing to me how effective dilaudid is when given IV, versus how absolutely worthless it is in pill form. It gives me a bit of insight on how someone could get hooked on injecting narcotics that I never really thought I’d have. Just some food for thought.
A new number that we’ve started to pay attention to is my IgG level. It stands for immunoglobulins (don’t ask me where the second G comes from). What this number boils down to is that it represents, essentially, your body’s effective immune response. So while having a high neutrophil count is important because it tells you how many cells you have to fight bacteria, your IgG level tells you how effective your body would be at fighting off infections. Before I was discharged, I got an infusion of IV IgG to help my immune system out while I was recovering. Since then, I haven’t needed another injection, and my doctor said that it was one, very surprising that I hadn’t needed one, and two, that it was a very good sign that my bone marrow was able to produce IgG at almost normal levels. Last week, my level was 637, and the normal range starts at 650. This week, it was in the high 500’s, which was still plenty high enough to be considered “good”.
All of this points towards a recovery that is progressing exactly how we want it.
Day 100 and Bone Marrow Biopsy
We asked my doctor about throwing a small party to celebrate reaching day 100 next Friday, and we were slightly approved. Adults only, nobody with any inkling of any kind of sickness, nobody exposed to anybody that’s been sick recently, and everybody must sanitize their hands upon entering, and upon touching surfaces. Also, no hugging or kissing me. And keep the numbers down. So, I can do a small gathering of adult family, which is nice, but I really miss my extended family, and can’t wait until I’m allowed to throw a big party and invite them and all my friends to come hang out. Gotta keep waiting, which I guess I’m getting pretty good at.
I was also expecting to get a bone marrow biopsy on day 100, which would make having people around less fun, but the other good news is that we’re bumping down to ONE hospital visit a week. Very cool! So next week I only have to go in on Wednesday, and my doctor is going to be away at a conference, so she bumped the biopsy to the following Wednesday. That leaves me clear for the day 100 party, though it means I have to wait an extra week to find out the results. Always with the trade offs.
Bumping Down the Meds
This week were able to reduce the steroid medication again, and we bumped down on my marinol (THC). I’d really like to be able to start coming down on some of the shittier meds (namely, the cyclosporine, which is responsible for basically every major side effect that I’ve experienced to date), but it’s nice to start to be able to take fewer pills per day.
Unfortunately, we had to increase my blood pressure medication, as my BP was still in the 140/90 range. Quite a far cry from my normal 100/50.
I’m No Longer A Cyborg!
I am now officially PICC and Hickman Catheter free! No more dangling lines, although this means that every weekly visit will result in a poking. Annoying, considering the amount of blood labs I have to get drawn every visit, but it’s nice that I don’t have to worry about getting things wet when I shower. The patches they gave me never stuck well, and so I was always rushed and paranoid during showers. Now I can take my time, and its funny how that changes the whole experience for the better. To be honest, though, I wasn’t really in a rush to have the hickman out, and I’ll probably miss having it after a month of getting pricked.
The funny thing about medicine, to me, is that despite all the advances we’ve made, sometimes “procedures” are pretty primitive. Removing the catheter was a doctor holding the line, picking up the sutures, then literally just yanking the line right out of my chest. No fancy machine, apparatus, drugs, techniques, nothing. Just a nice solid yank (which kind of felt like someone giving me a half strength punch to the chest) and that was it. It was in the trash before I could even ask to take a picture of it.
I’ve been having more and more frequent migraines (3 in 3 weeks is where we’re at currently, and I used to get maybe 3 migraines in an entire year). My doctor suggested I see their neurologist, who approved me for a man-sized dose of imitrex. Previously, I had finally gotten approval from my doctor to take 25mg at the first sign of a migraine, and 25mg more if that wasn’t enough. The neurologist laughed at that dosage, and said that I should just take 100mg at the first sign of a migraine, and potentially an additional 50mg if needed (though he said that if taking 50/50 worked before (which it had, during my stay at Cornell), taking 100 up front should be plenty). So far, I had one migraine since seeing the neurologist, and I stupidly split the dosage into 2 doses of 50. I should have taken his advice and front loaded the 100mg, but instead, I had to suffer a few extra hours. Oh well.
Oh, and an interesting story about insurance. So far, Oxford has been absolutely unbelievable. They’ve covered everything that we needed covered, they haven’t taken extended periods to approve really anything (except when I had a weird pain in my right leg – they wouldn’t approve an MRI until about a week later when the pain had gone away), and we’re talking a total bill well in excess of a million dollars to date. However, trying to fill a prescription for imitrex has been a ridiculous nightmare. My plan covers FOUR pills as a monthly supply. Considering a single migraine requires 2 50mg pills, this could range from plenty of pills, to not nearly enough pills rather easily. So, we had our doctor call the insurance agency up to get what’s called “prior authorization” to approve giving me up to 18 pills at once. However, every time we try to fill the prescription, the pharmacy says they’re only allowed to give me 4 pills at once. So, I have 3 bottles of imitrex, all with 4 pills in them, all at differing doses. I’ve been assured, though, that waiting at my CVS is a bottle with 27 pills, and that should basically last me a year. We’ll see if they actually give me that many pills, or if we just get 4 again.
Insurance is so god damn weird. You’d think that after spending so much on my treatments that they’d just give me whatever the hell pills I need. Hell, my regular drug costs are already totally over $80k…what the hell could the imitrex cost in comparison?
I asked Dr. Barker when I could go back to work, when I’d likely be able to get back in the gym, and when I could move back to my apartment. She said that we could start talking about moving back into my apartment in the next few weeks. She said the fact that we were even able to have that discussion at day 100(ish) was a really good sign. She said that most of the time, it takes 6 months total (so 3 more months) to get back to work, and that when I went back to work, I’d likely be able to get back into the gym as well.
The major thing we’re watching for now is a virus called CMV. They check for it every time I go in, and for the next ~4 weeks or so, I’m still at risk for it flaring up. Additionally, the upper gut GVHD that I had that we controlled with the steroid could also flare up, which would make us have to slow down on weaning me off the steroid. Those two things could range from serious to an almost non-issue. If the CMV flares up, they have a pill I can take that should take care of it, but I might have to get a PICC placed to get a medication via IV. So that’s one of the worst case scenarios that could happen in the next few weeks. My doctor was confident, though, that I should be fine, and that if it does flare, that the pill form would be able to take care of it.
The crappy thing is that I went into the transplant CMV negative. About 80% of the American public has been exposed to CMV, and for people with a normally functioning immune system, CMV is basically just there, hanging out, doing nothing. However, when you’re immuno-comprimised, CMV is a big deal. Going into the transplant CMV negative actually significantly improved my prognosis. Unfortunately, while at the hospital, I was exposed to CMV somehow, and became CMV positive (meaning, my body produced CMV anti-bodies, not that I actively got CMV). I’m not entirely clear on how this happened, exactly, but my doctor assured me that it’s okay, and not that big of a deal. I trust her, but I hope I don’t get burned because of it.
What I’m doing with my free time
The other night I spent about 3 hours going through my kindle purchases since 2009, and updating my goodreads profile. Goodreads has a cool feature that lets you view stats like the total number of books you’ve read, and the number of pages those books represented. In 2011, I read 21 books, or about ~12,000 pages. In 2012, I read 52 books, or about ~22,000 pages. One thing is for sure – cancer gave me a lot of free time to read.
I’ve watched all of season 2 and part of season 3 of Shameless. I watched the entirety of the Newsroom (awesome show). I’m starting up on Dr. Who (which is going to be a MAJOR time sink). I’ve gotten sucked into the Alaskan reality shows on discovery (Bering Sea Gold and Gold Rush), sucked into the antique type shows on discovery (Storage Wars, American Pickers, Pawn Stars), and watched so many episodes of Restaurant Impossible and Diners, Drive-Ins and Dives that I’m actually starting to see repeats in the re-runs.
I’ve also been cooking for my family a lot more frequently, and I’ve been experimenting with making doughs. Last weekend, my sister and I made cinnamon buns (we got the wrong kind of yeast and had to make some emergency adjustments, but the end results were pretty solid), and this weekend, I made everything bagels from scratch. The bagels were a resounding success, and they were surprisingly easy to do. Considering I haven’t been able to have a bagel (one of my favorite breakfast foods ever) since Halloween, I was a pretty happy camper this morning. Take a gander at the finished product:
It was well worth the wait. It’s also probably the first time I’ve ever baked something that the first attempt didn’t end in misery, nor would I have really changed anything in the process. A big thanks goes out to my friend Jenna for the inspiration and the recipe.
Oh, and I made the wings again, and this time, they came out even better than my first attempt. The key is to keep your initial oil temp below 250 degrees, and to watch the wings really closely. As soon as the meat starts to pull away from the bones, you pull them out of the initial low-temp fry, and let them cool on a wire rack. Then, the second key, let the oil re-heat between batches. The first time, I didn’t let my oil get above 400 degrees before I dropped more wings into it, and so the initial batch was perfectly crispy, but secondary batches were sightly less perfect. My brother in law also brought a locally bottled extra hot buffalo sauce along, and that really made a difference in how delicious the wings came out. Unfortunately, I have no pictures of the wings, as they were devoured pretty much instantaneously from being batch cooked.
Next on the list;
I started the Dark Tower series by Stephen King. It’s one of the classic fantasy series that everyone says you have to read, and I just have never gotten into it. I’ve heard that the middle gets really wonky (as it was written after a horrific motorcycle accident that almost claimed his life), but that the end makes up for it. It’s 7 books long, so we’ll see what I think at the end. I like that the series is already completed, because I have about 5 series that I’m reading that I have to wait for books for years at a time. I don’t need more of those.
I finally remembered that I purchased a year’s subscription to Top Chef University, an online video course that teaches you everything from kitchen basics (like how to hone your knife) up to how you want to plate a fish course vs plating pastas, and everything in between. So far, I haven’t really learned anything new, but I am learning fancy french words for things I was already doing. Like when I add tomato paste to my onion/garlic/pepper mixture when I make chili, what I do is called “concasse”, where you let it cook out with the veggies. I also learned that most tomato sauces have celery in them, which is anathema to me, as my Dad’s gravy has no celery (or carrots), and therefore, these people are all wrong.
Get back on my bike. That’s next on the list of things to find motivation for, and while I’m struggling, I think once I set the thing up on the trainer, I’ll start to use it regularly. Have to get ready for when the season warms up and I can ride with my sister and brother in law, who will both be worlds better than when we last road, while I’ll be worlds worse. They’re training for St. Anthony’s triathlon in April, while I’ve been sitting on my ass, eating like a horse. Oh well. I’ve made this journey from out of shape to in shape twice before. Third time’s the charm, and hopefully, nothing will get in the way of me attempting an olympic distance triathlon in the fall. I might have to settle for a sprint distance, but we’ll see how training goes. I might also have to settle for a cycle-only event, as I was a terrible swimmer even when the rest of me was in great shape. I have no idea if I have the time to be able to get into swimming shape for a mile swim. We’ll see how things go!