- Hemoglobin 13.5 (WHO normal 14.0-17.3) — normal by UM standards
- Absolute neutrophil count 2.4 (normal 1.4-7.5) — NORMAL
- White blood cell count 3.1 (normal 4-10) — subnormal but expected
- Platelet count 201 (normal 150-450) — NORMAL
They actually had to make me go in for the blood test. I thought Dr. B had put me on a 3-month schedule, but the nurses thought otherwise, so I grumbled but I went. I won't have another until mid-May, at my next followup with Dr. B.
It's been 6 weeks since my last headache. Once in a while I get a twinge that reminds me the underlying condition's still hanging around, but otherwise I am absolutely, completely normal now. I can do anything. Bring it on.
Median time to relapse is 8 years. Retreatment usually works. Some people never need more treatment. And I have a normal life expectancy. That shakes out as victory — which is never permanent anyway, so why the hell not.
In fact I feel better than I have in 2 years. The other day I suddenly realized I'm taking stairs 2 at a time again, something I did all my life until I gradually started slowing down as my hemoglobin dropped. I made up all kinds of excuses — aging, tired that day, didn't want to sweat in my work clothes. But I sometimes wondered why I couldn't just bound on up the stairs, like I always had.Anyway. Balance. I had in mind "balance sheet," adding up a bit of what I learned from all this. Today that seems like a bigger job than I want to tackle, so I'll just throw out this:
Time is short, and precious. Don't waste it wishing you were somebody else.
If you've got a good life, you don't need another one. Just do what you do, use what you have, give everything you can to everyone who needs you. Chop wood. Carry water.
5 comments:
Hi there- my name's Steph, and my dad was just diagnosed with CDL (I believe at Royal Oak Beaumont, not too far from AA, interesting coincidence, I think!). I was wondering if you'd feel comfortable emailing with my dad (or more probably myself, as I'm not 100% sure about how he'd react to a "pen pal" situation; he's certainly no blogger!)
I know that this may seem like an odd request, and may take up time that you'd prefer not to waste, but I'd really, really appreciate it if you could "mentor" us a little, from time to time? (I'm pretty much scared to death of what's going to happen to my favorite person in the world, you know?)
Anyway, I've created a new account for you, please email me if you feel comfortable? I hugely appreciate your time!
harris.steph84@gmail.com
Steph
PS- HUGE congrats on going into remission and feeling better again!!! It's extremely heartening to read that you're doing well, and I'm extremely happy for you and your family!! :)
Paul,
I'd like to know how you're doing. My blood test just came back with a phenotype indicative of HCL and I'm waiting for the bone marrow biopsy result. The doctor got a dry tap and then went in with a long needle, so I'm bracing myself. Your blog has been extremely helpful. I've come to find out that my old house's well was contaminated with perchlorethylene and other chemicals from a gas station up the street. I'm wondering if that caused this disease.
Jon
jonhoward1@verizon.net
I responded to Steph's comment right away, and we had some exchanges over a few weeks' time.
Turned out that was a good thing. Her dad had wound up with an idiot doctor who decided he should get five rounds of 2-CdA, one week on, two weeks off. This guy is in his 60s, has a few other medical problems. If he'd gone for that he might have died. (Where do these lunatics come from?)
Anyway, he got a second opinion, got set straight on the treatment plan, and that's the last I heard. Hope he's doing well.
- Paul
Hi Paul,
I am so glad to hear that you are doing well and gone into remission. Thanks so much for your blog. It's been very helpful to me. I've just been diagnosed and trying to figure things out. I've gone through so much of what you describe in your early diagnosis process.
I also am relatively health and strong, as well as younger and female-- different than most HCL patients so it was quite a surprise to my hematologist. Like you, I found out due to an abnormal result on a routine test for a minor surgery [to fix a orthopedic injury to allow me to get back to contact sports!] I am originally from Michigan and think highly of UM medical. So, I am actually going to be at the same clinic seeing a Dr there next week for a second opinion and confirmation.
You might want this to be behind you and you are off enjoying the wonderful summers in A2 with your wife and son. Let me know if you are up for having a little e-mail exchange.
Paul, I've really benefitted from your blog and other posts. I was diagnosed last Oct 2009 and had Cladribine for five days 16-20 Nov 2009. I am in remission and all of my blood counts (except B-Cells) are in normal ranges. My biggest problem is I'm tired all the time. I looked up the symptoms of chronic fatigue and they fit me perfectly. I wake up tired and every time I push myself at all I end up taking two or three days to recover. My son is a nurse and he tells me that the chemo got into my bone marrow and is still releasing when I exert myself. My Doctor says things should start to improve and my energy level increase over the next six months. I don't think its depression as I'm perfectly happy when I'm not doing anything more than watching television. Any thought you have on this would be appreciated. My email is FLCoyote@knology.net. I wish you a permanent remission.
John
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