It’s been a while, hasn’t it? Well, I figured I’d stop by and drop some updates out there.
Hospital Stay
The last hospital stay was a rough one. First 2 days were rough because I could barely talk, couldn’t swallow, barely ate, and was just generally uncomfortable. Luckily, the antibiotics cleared up the fever and the throat infection pretty quickly, and once those were gone, I felt pretty much normal again.
Unfortunately, my string of unluck with roommates has continued. Granted, the median age of leukemia / lymphoma patients being 67+ means I will likely not have a roommate who is in a similar situation to me (tolerating things pretty well), but what can you do.
This roommate would wake up at all hours of the night, turn on the light, call the nurse for something, but would pass out before the nurse got there, and then leave the light on. Over and over. All night.
Normally I sleep like a rock. In that once I’m asleep, waking me back up is, for all intents and purposes, impossible. However, at the hospital, you just have so much crap going on all the time, and the bed is just so god damn uncomfortable that sleeping for extended periods of time is just about never going to happen. Despite telling myself a long time ago (well before this whole cancer business) that I would never resort to sleeping pills (I’ve always been a troubled sleeper), I have asked for and gotten various bits of sleep aid, just because without it, I don’t fall asleep until 4-4:30, and they wake you up at 5, 6, and 9:30 for vitals, blood draw, and rounds respectively.
Then I get home, and my sleep schedule is just upside down. And I try to help out at work, but it’s tough, considering I haven’t really woken up earlier than noon since getting out – and that’s not even like I’m sleeping that much because I don’t fall asleep until 5.
I read an article about a way to cheat your sleep cycle into resetting itself using your food schedule, and I’m debating attempting it. It’s either that, or chug some ZzQuil for a few nights in a row and try to get back to a regular-ish schedule that way.
Being Home
So far, so good. No additional issues since getting discharged. No major aches or pains, just the regular shortness of breath I’ve been experiencing since finishing round 1 of chemo. I’m back into the safe zone of platelet levels, so I’m going to finally get on the bike and get outside, and see what kind of damage the chemo (and lack of exercise) has done to my conditioning. Let’s just hope it doesn’t start pouring every time I try to saddle up.
I ate a steak for the first time since April, which was awesome. I eat my red meat basically raw (rare warm or rare cool, depending on the mood), so it’s a big fat NO while you’re nuetropenic. With no immune system, you have to eat steak well done, and for me, there’s just no point. My dad took me to Delfrisco’s in the city, though, and it was pretty much glorious to eat a big fat strip steak after so long without it.
Basically, I’ve been trying to see as many friends as I can, help with work when I can, relax, see movies, and gather up some stuff to do for my next hospital visit, which should be coming up fairly soon.
That Dread I Mentioned
So we come to the namesake of this post. I’ve mentioned quite a few times about “the decision” that I have to make, and we are rapidly approaching D-Day on that one. I met with my 2 main doctors today (just as a post-consolidation check up, confirming numbers, confirming thoughts about the plan, and just generally checking in).
The good news is that my numbers are recovering as planned. I apparently was misinformed about my white count when I was discharged (I was told it was 7, which seemed shockingly high to me at the time, but I was fine with it), but the numbers are:
Hemoglobin – 12 (not sure if this will go higher or not – it seemed to be about where my red cells ended up after round 1. Sometimes after chemo, your “normal” hemoglobin just drops, and either doesn’t ever recover, or takes a REAL long time to recover. Again, “normal” for someone my age/size/weight/gender would be between 14 and 18. So…almost in the normal range)
White Count – 3.4, neutrofils somewhere around 1.7ish (we didn’t wait for the diff, but when I was discharged, they represented about 1/2 my total count)
Platelets – 74,000
So we’re right on schedule. Next week I’ll get another bone marrow biopsy just to confirm the remission, and by then, my platelet count will be back up to most likely 150-190,000.
And then there’s the Big Deal(tm) tomorrow. Tomorrow, I finally get to see the cord blood transplant specialist, Dr. Juliet Barker. She works over at Memorial Sloan Kettering, and she is pretty much the best in the world when it comes to specifically cord blood transplants. She should have an idea of what my specific numbers will be, with my specific cord matches, and my age group, and all the other things. Once I hear from her, it’s pretty much going to be up to me to come down with a decision. I should also finally be getting back the TET2 results, which will also help weigh in on what side I come down on.
Again, the frightening things here are a multitude. And my two main doctors are both basically leaning in opposite directions, with both wanting to hear Dr. Barker weigh in on the subject.
My main doc, Dr. Roboz, has pretty much been leaning towards stem cell from day 1. She hasn’t really come out and said that, but it’s just the impression that I’ve gotten. The numbers she’s been using are the follows:
Currently, with the info we have (still waiting on the last 2 genetic tests), she thinks I have between a 40 and 45% chance of getting a 5 year remission with just chemo. She thinks the chance of a 5 year remission (5YR because I feel like being lazy) with stem cell jumps up to between 55 and maybe even 60%. The risk of mortality (just straight death) from the transplant, she thinks, is very similar, between matched related donor (best case), matched unrelated donor (2nd), and matched/semi-matched cord blood source (3rd). So if you have a matched, related donor, the mortality risk is anywhere from 5-10%. Matched unrelated tends to be 10-15%. So somewhere around there is where she’s thinking cord blood transplants will be. She also feels like Haplo-identical stem cell is a viable course of action, and if need be, the dude to see about it is her boss. So that’s cool.
Tallman, my other doctor, however, is painting a different picture. First, he basically poo-poo’ed haplo transplants (where you take a cord and supplement it with a “boost” from a half match (typically a parent) to the point where he said, if chemo was remotely an option to cure his own luekemia, and the only other option was haplo, he’d still take his chances with chemo first. He also seems to feel that the chance of a 5YR for me with just chemo is solid enough that we really shouldn’t do the transplant first. He says my prognosis is good enough to risk the chemo first, and if I relapse, get back into remission and do the transplant then. And hope that in the intervening time, an unrelated living donor will have shown up in the registry. He seems to think that related and unrelated living donors give you a mortality risk of 10-15%, but that a cord blood transplant is 20%+, maybe even as high as 25%, even for someone my age. He said that if this had happened even 10 years in my future, I’d have as high as a 30-35% risk of mortality going with the cord blood.
Whoa. That is some serious shit to be processed right there. 1 in 4 people that get transplanted, die. Er – not really a positive way to spin that, considering those are the same odds for someone to experience bone pain from neupogen, which I definitely experienced. So there’s that.
But again, this is why I wanted to talk to Barker in the first place. She’s the specialist, she’s the one that knows these numbers and has the data to back it up. It’s why I’ve tried to reserve judgement until I hear from her.
Which happens…tomorrow. Hence the dread.
But there’s also hope. Hope that she’ll be able to provide some sort of guidance. Hope that I will have a clear plan after tomorrow morning. Hope that this decision weighing on my mind will finally be done with, and I can just focus on dealing with the treatments as they come.
And I have to reiterate something – if I go with the transplant, it looks like I won’t actually get transplanted for 2-3 months. That puts the transplant into October/November, which puts my estimated time of recovery into the winter. And I swear.
The person that tells me I’m not allowed to snowboard. Is SERIOUSLY. Going. To. Regret. It.
Because God Dammit if I’m going to miss this season because of this stupid ass cancer.
I’m only partially kidding.
And I leave you all with a video that has gotten me singing along, cackling like a mad man:
I love the break down in the middle, because the man makes a solid, solid point.
Hey bro, it’s one hell of a decision. I know you will pass with flying colors regardless of the decision. Stay calm and know you have the support of all your friends and family.
wishing you the best for what-ever happens. I know first hand how frustrating cancer treatment can be. I am in remisson from NHL-. Keep positive and moving .. and eating what you want when you can ………..
Hope you are feeling better this week and enjoying being home. Keep writing 🙂 it’s good for you and reading your posts I’m sure helps lots of other folks. Wishing you lots of delicous rare steak dinners and a good night sleep!
PS that video is hilarious
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Just wanted to say that I have been dealing with this for 8 years…………The first year I had chemo it put it into remission for 5 years and then came back with a vengance…………I had 4 more rounds of chemo and full body radiation…..I then had stem cell transplant last year it was tuff had to stay at the Cleveland Clinic for 5 months but all is going well good luck……….It will all work out
Thanks Joe, sorry to hear your struggles have been so difficult, but I’m glad you’re doing better now. I hope you have continued success, and thanks again for reading the blog and the well wishes.
Heyy, glad to hear you’re home! I hope you can get on your bike soon 🙂
Thats a major decision.. its so hard to just calm your mind and push things out until its time to deal with them – cuz you cant let it eat you alive while u wait for the time to come.. I can’t imagine how much u must have on your mind, but I’m happy to see you posting and that you have your family and friends supporting you. Its just one day at a time.. Take care.
Thanks! Yeah…my doctor today told me to just not think about it for a few days while the 3 main ones confer, discuss, and come to an ultimate conclusion/recommendation for me.
Not the easiest thing in the world to do, but I’m giving it my best shot.
And I have made plans for biking tomorrow afternoon…so provided my luck doesn’t make it rain, I’ll finally be able to get back on the bike outside for a while!
So with the allosct is there a chance of a cure? That the disease will not return.
Is it certain that with the chemo only that there will be a relapse?
Yes/no:
With SCT, the rate of relapse is 11%. Which is awesome. But the risks and side effects are waaaaaaaaaay more predominant. Plus, there’s a 20-25% chance of death when you do a cord blood SCT.
With just chemo, there’s only about a 1 or 2% chance of death, there are much fewer side effects, and its generally easier and less risky. However, the relapse rate can be as high as 55%.
So basically, it’s take the biggest risk up front, hope to survive the transplant, then be basically ok (although if you relapse after a SCT, it’s more or less a death sentence). Or, you take your chances with the chemo, have an easier time up front, and just hope that you get all the leukemia and it doesn’t come back.
Eff Leukemia 
Hey bro, it’s one hell of a decision. I know you will pass with flying colors regardless of the decision. Stay calm and know you have the support of all your friends and family.
Thanks Mace.
wishing you the best for what-ever happens. I know first hand how frustrating cancer treatment can be. I am in remisson from NHL-. Keep positive and moving .. and eating what you want when you can ………..
Good luck with your NHL, I know that can be rough at times as well.
And that’s the plan…
Hope you are feeling better this week and enjoying being home. Keep writing 🙂 it’s good for you and reading your posts I’m sure helps lots of other folks. Wishing you lots of delicous rare steak dinners and a good night sleep!
PS that video is hilarious
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Haha thanks! I have a few more posts in the works, so keep your eyes peeled.
And I seriously just cannot stop singing along to that video. Dying over here.
Just wanted to say that I have been dealing with this for 8 years…………The first year I had chemo it put it into remission for 5 years and then came back with a vengance…………I had 4 more rounds of chemo and full body radiation…..I then had stem cell transplant last year it was tuff had to stay at the Cleveland Clinic for 5 months but all is going well good luck……….It will all work out
Thanks Joe, sorry to hear your struggles have been so difficult, but I’m glad you’re doing better now. I hope you have continued success, and thanks again for reading the blog and the well wishes.
Heyy, glad to hear you’re home! I hope you can get on your bike soon 🙂
Thats a major decision.. its so hard to just calm your mind and push things out until its time to deal with them – cuz you cant let it eat you alive while u wait for the time to come.. I can’t imagine how much u must have on your mind, but I’m happy to see you posting and that you have your family and friends supporting you. Its just one day at a time.. Take care.
Thanks! Yeah…my doctor today told me to just not think about it for a few days while the 3 main ones confer, discuss, and come to an ultimate conclusion/recommendation for me.
Not the easiest thing in the world to do, but I’m giving it my best shot.
And I have made plans for biking tomorrow afternoon…so provided my luck doesn’t make it rain, I’ll finally be able to get back on the bike outside for a while!
Sounds like a good plan 🙂
So with the allosct is there a chance of a cure? That the disease will not return.
Is it certain that with the chemo only that there will be a relapse?
Yes/no:
With SCT, the rate of relapse is 11%. Which is awesome. But the risks and side effects are waaaaaaaaaay more predominant. Plus, there’s a 20-25% chance of death when you do a cord blood SCT.
With just chemo, there’s only about a 1 or 2% chance of death, there are much fewer side effects, and its generally easier and less risky. However, the relapse rate can be as high as 55%.
So basically, it’s take the biggest risk up front, hope to survive the transplant, then be basically ok (although if you relapse after a SCT, it’s more or less a death sentence). Or, you take your chances with the chemo, have an easier time up front, and just hope that you get all the leukemia and it doesn’t come back.