Getting Better All the Time

Yikes! It's been awhile since I've updated, and thanks to all of you who have emailed me about that. It's not that I haven't been well; far from it. In fact, every day in every way I am getting weller and weller. Or gooder and gooder. Something like that. I'm fine.

And I've got proof! I finally assembled all of my 'numbers' into some official-looking graphs for your entertainment. Check 'em out!

So the hemoglobin is the most important number as far as I'm concerned. That's the red blood cells, and if you remember, you get dizzy and fall down if that number gets too low (like 5.3) The increase in hemoglobin also shows that the disease that prevents the production of red blood cells is being wiped out. If there was a pre-chemo chart for this, it would've shown a steady decrease over the last year or more. The norm for me should be 14 or 15, so I've got a ways to go, but 12/29's number of 9.8 was a new high, and the 1/5 number should be over 10!



The white blood cells represent the immune system, or your ability to fight infection and disease. The chemo drugs knock this down a lot, and this is probably what most of the shots Kathy gives me are for, as 'boosts' to keep it up after and between rounds.

The platelets are what you need for blood coagulation. Before I started the chemotherapy treatments, the doctors and staff were cautioning me not to cut or bruise myself. I guess I was about the same as a hemophiliac at that point. We've gotten a few 'do-it-yourself' shots for this as well, although as you can see on the chart the platelets rebound pretty well after about a week.

You might notice the early weeks of the charts are missing some data; that's either because we didn't get a copy at the doctor's office, or perhaps because it got lost in the shuffle in the early days of all of this.

And that's one of the reasons why I think it took me so long to start posting again: the weekly checkups, shots, chemo rounds, etc, have all become the new Normal for me, and as such the whole routine just seemed kind of repetitive and well, boring.

But things are going well, so that's news enough I guess. And I'll be posting more and keep updating the charts from week to week, as well as any other info that seems interesting.

Like this: sharp eyed TV viewer and my nephew Tyler was watching a rerun of the doctor comedy 'Scrubs' and one of the subplots concerned a guy who seemed to be a hypochondriac who kept coming in and complaining that he didn't feel right in one way or another. In order to get him to stop coming to the hospital and taking up valuable doctor time, they threaten to give him a bone marrow test, which consists of 'sticking an enormous needle all the way through your hip, and it's very, very, very, excruciatingly painful' Of course the guy agrees to the test, and it turns out he has: Waldenstrom's Macroglobulinemia! So if everybody had been paying more attention to this show six years ago it would have been obvious what was wrong with me. Or maybe not; they did even admit on the show that there are almost no symptoms for WM. Anyway, it seems like there's reruns of Scrubs on every other hour, and it's Season 2, episode 12- watch for it! Good catch , Ty!

If anyone else out there hears anything about WM out there anywherer let me know and I'll post it here!

Happy Thanksgiving!

Hi All-

I probably got carried away with the whole "hair today..." thing last time, but it was pretty interesting to me, and a number of people were curious about how all of that would happen. Either that, or they just thought it was funny I was losing all my hair (just kidding, but you've gotta admit there's a certain humorous irony there)

So others have been asking "how's it been going on the medical side?" since I didn't really get into that. I am happy to say that things have been going very well as far as we've been told/observed. I felt pretty darn good right before Week 4 (the second chemo) a couple weeks ago, and the day of the treatment my red blood/hemoglobin level was at 8.7, which Dr. Stan deadpanned was 'terrifyingly high'... at least, for me, haha. The chemo went well, although I dozed off in the middle of it. No issues afterwards- I take all the pills I'm told to and on schedule, which is a new thing for me (especially if you know my attitude towards taking medicine), and Kathy's an old pro now when it comes to the shots. I've had some problems with indigestion, but had that before for years off and on, so I can deal with that.

Week Five's checkup was sort of a nailbiter- would I need another transfusion? Thankfully, my level only dropped to 6.6, which made the nurses nervous, but which Dr. Stan thought was fine, since he knew I could function with those numbers. I definitely noticed more fatigue and a need to pace myself going up the stairs after the chemo; I had gotten used to moving a little quicker again at the higher levels. But it wasn't bad- no dizziness for normal activity.

Last week (6) my levels were improving; 7.7 for the hemoglobin, and 7.8 for my white blood cells, which had started out at 3.0. We also had a return visit to Rush that day, and Dr Stephanie was also pleased with the progress so far. She also had some ideas for the future- more on that later.

So here it is week 7, and I had my third chemo yesterday (Tuesday), two days early due to Thanksgiving. My levels were even better today- 9.4 for the hemoglobin and 1.31 for the white blood cells, new highs for both! Plus, the white blood is almost in the lowest rungs of the 'acceptable' range now! Granted, the chemo will knock everything back now, but I'm definitely on the right track.

I do have to go back for more chemo on Wednesday, however. This is for a new drug called Rituxan which I'll be getting for the first time. They wanted to wait for all of my levels to build up before adding this to the regimen since it gives an extra smackdown to everything. There are also a number of possible side effects for Rituxan, so they want to give the first dose very slowly to make sure I'm good with it. It could take as long as five hours to get through it, or shorter if they think it's going well. The list of possible side effects is, well, scary, but you have that with any of the truth in advertising for drugs these days. If you want to read up on it, check it out on the webmd website.

That should catch you up on my health and satisfy all of you statistical numbers freaks. Maybe I'll start keeping track of that on a nice graph or a pie chart (mmmmm....pie) - it's always good to have pictures when things are going well!

On a more frivolous front, a few brave/loyal/crazy people volunteered to shave their heads for me, and we got that done last weekend. Why did they do this? Solidarity, goofiness, friendship, maybe even... head envy! Who knows? But I'm grateful, and it was nice to see my first non-medical real people in six weeks for awhile. So thanks to Jeremy, Tim, Dad, and Sean for stepping up to a new look! And extra big thanks and hugs to Joyce for shaving everyone for free (and for the cookies)!

Here's some pictures from this small yet grand event:

Now here's some handsome dudes: Jeremy, Tim, Sean, Dave, and Dad Mike

The 'Timmohawk'

(I think he enjoyed this look entirely too much for the 7 minutes he had it- don't be surprised if you see it again)

Dave, Becky (with green extension), and Tim

I'm doing my best Yul Brynner 'King and I' imitation... etcetera, etcetera, etcetera...

and The Lennys played/practiced some songs acousticky-style! Longhaired hippie-type Cory declined a shave for now-- he'll be growing is hair for a few more inches and then donating it to Locks of Love so some lucky kids can have his rockstar hair, so he's excused...


I'd also like to take a moment to thank all of YOU once again. I have received so much support via emails, letters, advice, and gifts from so many friends from my church, work, band, and community I can hardly believe it. You are all very thoughtful and Kathy and I both appreciate every one of you. I'm trying to keep up on all of my thank you notes, and while I'm running behind, it's good work and keeps me busy. You know, I've always felt like my life has been pretty good before this little glitch, but the times are such now that I realize how blessed I have been for all of your friendship. I'd like to quote the Iron Horse in saying that "I feel like the luckiest man on the face of the earth" (there ya go, Wayne). Of course, I'm looking forward to a better outcome than Lou, but it doesn't change a thing either way. God is good.

And here we are, the day before Thanksgiving, an officially-sanctioned day to thank God for all of our blessings. I've got a lot to be thankful for this year, and best of all I think I realize it more than ever. Being homebound with family is ok with me, although I'll miss the extended family gathering. Well, at least they'll have a few bald guys there to remind them of me.

So on behalf of Kathy, Chris, Jeremy, and John, I'd like to wish you all a safe and happy Thanksgiving and to thank you all once again. We hope you take some time to recognize the good things you have been blessed with and give thanks for them, and if you have an extra moment, say a prayer and raise a toast for absent friends.

We will!

Dave

"When I Get, Older, Losing My Hair..."

Hello all-

Well, it's been an eventful couple of weeks since the last update, so here's what's been happening around here...

One thing I really look forward to every year is Halloween. Not that I go out and do anything, but I just like seeing all the kids' costumes and handing out candy. Our neighborhood usually gets a decent amount of trick or treaters- a lot of families with smaller kids early on, then the slacker old kids who sometimes aren't even wearing costumes. Or maybe they are? I sometimes feel like hassling them about it (since I doubt that they'd be prepared to play tricks either), but I don't. Kathy always has plenty of candy for the evening, so nobody goes away emptyhanded.

So with the weather looking so good for Halloween this year, I was especially disappointed that I really shouldn't be at the door coming into contact with all of these people. Kathy came up with the perfect solution, with additional thanks to Jeremy, who was working as the manager of a Halloween store this fall....

I felt sort of ridiculous, and a lot of the kids were a little taken aback when I opened the door, but the parents got a kick out of it and nobody even knew why I was dressed that way, or that the mask and gloves were real. I only did it until it got dark, but it was fun. And we've still got leftover candy...

The next day, I noticed that I was starting to lose some hair. Then later that evening, I discovered that I could actually pull it out by the fistfull. And I did, many times. Remember when Moe or Curly would grab Larry's hair on the 3 Stooges and rip out a chunk? It was like that. It didn't come out in patches though; looking at me, the visual effect was just that it was getting thinner. Quickly.

By Tuesday or Wednesday, most of it was gone. Pulling it out was easier than brushing it, and made less of a mess. And it was something I could do while watching election coverage. For some reason I put most of it in a plastic bag. Don't know what I'm gonna do with that. Any ideas?

Thursday I had another chemo date. Dr. Stan looked somewhat pleased that he now had more hair than I did. At this point I only had strands of that 'crazed-guy-combover' type sticking out here and there. The beard was hanging in better, but thinning out. Once I realized that some of the hair just didn't seem to want to come out, I had Kathy just trim off all the goofy looking stuff.

If you look at the final pictures, you can probably see that I'm not quite at that 'shiny bald' stage yet. I don't know if that'll happen, or if it's just gonna stay fuzzy. Kathy seems to like the new look; she's intrigued by it and just keeps coming over to rub my head and laugh, and calls me 'Babyhead'. I told her not to get used to it; I'm fine with it not being there, but I'm definitely not going to be shaving my head on a regular basis.

Not that it's all that bad. I never really realized how much heat your hair keeps in. I've been wearing hats around the house sometimes, not because I don't want to see myself, but more because I seem to feel any draft or breeze now.

Well, if you made it this far, I'm sure you want to see some pictures! Kathy took a LOT of them, the collecting and cataloging of which has kept me pretty busy for the last week or so. To save some space here and make it sort of interesting, I put together my first slideshow! By the way, the 20 pictures shown are from 11/2 through 11/10.

(WARNING: May Frighten Small Children; Please View With Caution)

Now after watching that, if anyone seriously wants to take a shortcut to join me in this cool new look, it's all happening this Sunday! There's a few brave souls who have volunteered to shave their heads, but the more the merrier, so if you feel like you're ready for a change and are sick of all that tiresome combing, send me an email at heylennys@yahoo.com and I'll let you know where we'll be! It'll be fun, and when was the last time you had a free haircut?

Take care,

Dave