Living with MCL

I’ve heard it said, things happen in 3′s. I sure hope that’s the case, and it doesn’t turn into 4′s or ………..

Ever since returning from Vegas things have just not been going as I would hope. First it was the abnormally low platelet count, which fortunately seems to have resolved itself [for now], and then our cat Chloe decides to disappear, and despite repeated searches of the neighborhood has not turned up yet. I just hope if someone finds her they will call (Morris misses her), or at the very least give her a good home.

Even worse, this morning I crashed on my bike. It wasn’t a bad crash (we weren’t going that fast), and fortunately it wasn’t my fault (they’re always worse when you’re to blame). The person in front of me fell, and I ran over their wheel, scraping up my shin and knee, and screwing up the rear wheel. I didn’t even tear any of my riding clothes, but now that I’m home, my knee has started stiffening up some, I’m starting to feel some new pains in my thumb and hip.

And I’m not going to count the fact I haven’t been sleeping well at all the past two weeks, because that would make it a fourth thing, and I don’t want it to go beyond three.

I’m just hoping I’ll be able to ride tomorrow. I’ve been riding really good the past month or so, and I’d hate to lose any of that fitness. I can’t think of too many things that could upset me more, but I’m sure there are plenty I haven’t thought of either.

Oh well, we’re having dinner with some friends to celebrate their 45th wedding anniversary tonight. Hopefully that will cheer me up a little, and if there’s one thing I could use a lot of, it’s cheering up.

The further there is to fall.

As if it wasn’t bad enough I started having withdrawal pains Monday night about not riding my bike, after not riding for about a week, and then over sleeping yesterday morning, and not able to get a ride in before work [and it was too hot afterwards], today I had a visit with my oncologist, and discovered my platelets dropped to a minuscule 112 thou/cumm, well below the norm of 140 to 400 thou/cumm.

I had noticed a little more fullness in my spleen the last couple of days, but that isn’t really anything unusual. I often have those feelings. They come and go all the time. Even this morning they seemed to have dissipated, and I felt good riding the bike, but that was before seeing my oncologist.

Of course now I am experiencing a sensation of fullness again, along with a some feelings of trepidation. Low platelets and fullness in the spleen is a good indication of a malfunctioning spleen, especially when all my other counts were essentially stable.

It’s as if I’m being punished for having had such a great time this past weekend, and/or pissing off that friend of mine a week or two ago.

My best hope is it was a lab error, and if not, a few good hard bike rides, might shock my body into recovering. I will definitely be riding my bike into work tomorrow.

Or maybe it’s the 1000 IU of vitamin D I just started taking a couple of weeks ago. I knew there was a reason I don’t like taking supplements.

Oh well, stay tuned. I’ll know more next week. I’ve got another blood test scheduled for Monday.

That sure doesn’t sound like such a long time, does it? Heck, the typical home mortgage is 180 to 360 months. Even some car loans are in the range of 84 to 120 months.

But when you’re talking about cancer survival it’s an entirely different story. It is a long time. And I should know, because that’s how long it’s been since that fateful blood test that led to my diagnosis of mantle cell lymphoma (MCL).

That’s 100 months of living with a terminal illness, 100 months of blood tests (121 total) watching my numbers gradually degrade, and 100 months of stress, waiting for the next shoe to drop.

But when I read the results of trials, which consider remissions of 6, 12 or 24 month as being good results, along with the numerous problems and complications experienced by others, I can’t help but also think of 100 months as being a milestone. Especially considering I haven’t had any treatment, and still feel like I’m in pretty damn good shape. I even rode my bike 70 miles this morning, and managed not to get dropped [until the very end], despite a pretty rapid pace. Of course I am pretty tired right about now.

I know I’ve obsessed over this before, but I can’t stop wondering how I’ve managed to be so fortunate. Like I’ve said many times before, if I didn’t know I was sick, I wouldn’t know I was sick. And I doubt many others would think so either.

I had an appointment with my oncologist on Tuesday, and the one thing of note, besides the fact my numbers were essentially unchanged, was she made mention of the benefits discovered in cancer progression by increasing Vitamin D levels.

She researched other patients of hers, and discovered they were essentially all Vitamin D deficient, and recommended taking a Vitamin D supplement (1000 IU per day).

Considering the constant reinforcement [hype] by the dermatology lobby, and sun screen manufacturers, of the hazards of extended exposure to sunlight, the major source of Vitamin D, and me being the uber cynicist I am, I find that fact very believable.

She also knows I’m not much into taking supplements, plus I do get a lot of unprotected sun exposure when I ride my bike, but she put it out there for me to at least investigate.

So I did some research on the subject, and came across this very interesting article on the benefits of Vitamin D, performed at the Mayo Clinic, in newly diagnosed Diffuse Large B Cell Lymphoma (DLBCL) patients.

Of course it was only one study, a relatively small sample, and it wasn’t even performed on Mantle Cell Lymphoma patients, so how much benefit it will be to me or others is still open to question. Heck, I’m not even sure I’m Vitamin D deficient (that will be checked next month), but none the less, the data is compelling, and IMO worth further consideration, if not for me, then at least others.

So even if you don’t like taking supplements [like myself], at least have your Vitamin D levels checked, and consider spending more time outside exposed to the sun, without using any sun block. If nothing else, at least it will get you out of the house, and doing something a little more beneficial than simply sitting around the house reading some blog.

Who knows, they may even discover it’s just one more benefit to exercising outside, beyond the obvious.