After quite the hiatus, I’m back, and ready to update everybody on all the things. Let’s get right to it, shall we?
Recovering From Round 2 of Consolidation
I’ve been laying low since getting out of the hospital from round 2. This consolidation seemed to take a bit more out of me than previous rounds. That, or I just wasn’t really able to ever get a good nights sleep, so the fatigue kind of kept piling onto itself. I managed to go for a few bike rides with my sister, and some friends, but for the most part, I just kind of read and tried to relax in my apartment.
It was kind of nice, to be honest, though I think I went a little stir crazy at times.
This past Tuesday, though, I started to feel a bit off, and by 1:50 AM Wednesday morning, I spiked a 101.4 fever, and had some serious pain in my mouth/throat. Called my sister, and she brought me to the ER.
Luckily, this time, the ER wasn’t nearly as swamped as it was the last time. We fairly quickly were assigned a private room with its own bathroom (nice!), but unlike the previous visit, there didn’t seem to be any rush to get me on the IV antibiotics, or to get me some pain killers (boo!). It wasn’t too big of a deal, because by 11:00 am, we were on the leukemia floor, back in a normal leukemia room. I’ll take ~8 hours from admission to having a bed any day, compared to the 27 hours it took the first time.
I meant to update the blog somewhere around here, but I kept needing dilaudid to help with the mouth/throat pain. It was making me super dizzy, and a bit nauseous, so sitting up, eating, or writing were all basically out of the picture. Then, once my mouth/throat stopped hurting quite so much, I got a huge mother of a headache. Nothing would really help with it, which made life pretty unpleasant. Considering this isn’t the first major headache I’ve had since starting treatment, I’m starting to think that when I’m anemic, I’m just more susceptible to my normal headaches. When I look back, before I was diagnosed, I was getting headaches almost every day. I just assumed it was from lack of sleep / stress. I keep telling them that the only thing that got rid of my headaches was excedrin, but since excedrin has aspirin in it, which is a blood thinner (and I’m already thrombocytopenicand anemic (low platelets and low hemoglobin respectively) so taking additional blood thinners is bad), I am limited to mainly the major narcotic type pain killers.
Unfortunately, most of them either do nothing (oxycodone, percoset, tramadol), make my stomach hurt (oxy), or are kind of big drugs that shouldn’t be taken lightly (dilaudid). Luckily, they had the thought that it might be a migraine headache. They gave me imitrex, which worked. I’ve heard mixed things about imitrex helping migraines, but for me, it was nice to finally find a drug that worked as expected. They also finally listened to my repeated statements of “only excedrin helps” and found another similar drug to give me specifically for headaches. That also seemed to work. So the upside of that whole painful episode is that in the future, I know exactly what to ask for when I feel my head getting all uppity.
As for now, I’m kind of just relaxing in the hospital, waiting for my numbers to go up. My mouth and throat are both still pretty irritated, but so far, my head has mostly cooperated. I have to wait for my numbers to recover, which right now, is looking like will take at the very least the weekend. Possibly longer. We’ll see.
THE BIG NEWS
Last week I got a phone call that kind of changed some stuff. My stem cell transplant doctor called, and we discussed a few things. First up, they found better cords than Cornell had found. They found 2 cords that both matched 6 out of 10. This is pretty solid, and is about what I expected. Dr. Barker said she is happy with these cords, and we’ve made preliminary plans to schedule the transplant for October 24th.
I’m going to try to get it pushed back a week so that I can see Louis CK on the 27th…I bought 4 tickets back in January, and if it’s not going to mess things up, I would really like to see him. If I can’t…I can’t. But it’s worth asking, I think.
But the other interesting reversal is that she said she wanted to do a Haplo boost. This was the process she had initially poo-poo’d, saying that it made the initial process easier, but increased the long term risks of relapse.
Well, apparently, she’s done some additional research, and found that this isn’t the case. There’s apparently no change in relapse rate, but it does reduce the initial recovery time. So…my Dad is getting tested to see if he would be a possible healthy haplo donor. Don’t have the results there yet, but we’ll see.
Sloan also does things differently with haplo boosts. The rest of the world uses just one cord with the haplo boost, whereas Sloan does everything exactly the same as their normal cord transplant (2 cords fighting it out in a baby battle royale), but just adds in the haplo boost to give you a pseudo-initial immune system so that you’re out of the danger zone of nuetropenia sooner.
So it’s looking like the transplant is real. I’ve kind of avoided writing it down anywhere, because it’s fairly terrifying. Straight up 25% of people don’t make it through the transplant. That is…frightening. To say the least.
But the relapse rate is drastically lower. So much so that it makes the following 5 years much more tolerable. Pretty much what I’m reading suggests that going chemo-only is just as big a gamble, if not a larger one, than the up front 25% mortality rate.
So it’s time to roll the dice, as it were. Starting late October, I’ll be laid up in Sloan for 3-4 weeks if I do the Haplo. 4-6 weeks if not. Wish me luck. I had initially intended to make this a longer post, but I’m kinda pooped at the moment. So I’m going to eat, probably take some pain meds, and take a nap. Thanks for reading 🙂
Wow….this is sure some big news!!! Terrifying, indeed, but so glad that there is some positive movement on the match! Thinking about a lot, and wishing you LOADS of luck!
(meant to say “thinking about YOU a lot” in that previous comment!)
Hope you have a good night and get some sleep. Don’t know how your looking so great with headaches, fever and sore throat but today you looked fabulous! Keep up the wonderful positive attitude you have – your an inspiration to all your family. Love you Godson
Yea go Tony! This is effing huge news. You have youth and fitness on your side.
That’s the plan, haha
Good to hear from you! Someone asked me the other day why they can’t give you the whole plan upfront. I said it would be like asking for the moves of a chess game when you start. Your report is a great example of that. It’s why trying to plan one’s life can be frustrating. Good luck with the next round. I just posted a long update too. There’s been no time!
Yeah…it’s tough to write updates when there’s not much to say, or when there is, your head is clouded with heavy pain killers. Hope you’re doing well too 🙂
Hey! I’m so so SO happy for the good news about the matches!!! It sucks that round 2 didn’t go quite as smoothly as the other, but it sounds like you’re managing as you could expect/ imagine.
It’s thanks giving here in Canada this weekend, and I am sure am grateful that you’re able to go through with the transplant.. and, the date it’s scheduled for (although I know you want to move it..) is actually my Mom’s birthday. I personally feel like that’s a good sign 😛 even if you do change the date, it landed there in the first place, right ? 😛
I’ve been keeping my whole family posted on your situation, and they all wish you the best of luck, and are super happy for you, and proud of you for how hard you’ve been working/ fighting. Keep it up man!
Happy Thanksgiving my Canadian friend 🙂 I might be a little belated, but I hope you and your family were able to have a nice holiday despite all the drama you’ve been forced into dealing with. I also hope school is going well for ya 🙂
Thanks 🙂 our weekend was great, and school has been pretty good too. Hope to read more from yah soon 🙂
sorry, that should say managing as WELL as you could expect/imagine.. 😛 oooops