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

Update 2, or Needles and Pins (mostly needles)

Hi Everyone,

How are you? I am fine. Well, other than that. Besides, I learned long ago that this classic salutation works for any situation, so why not?

Thanks to everyone who dropped me a line in the last week or so since the first 'infogram'; it was great (and touching) to hear from you all, whether it was a humorous one-liner, advice, support, or offers to help out in various ways. I really appreciate the contacts with the 'outside' world, besides all of the medical staff I've been seeing lately. They're all nice people too, but they keep sticking me with needles.

Speaking of which, this is a new skill that Kathy's found she has, since I've pretty much needed to have a shot every day since the first chemo 2 weeks ago. They gave us the option of coming in every day to the office to get it, or 'do it at home'. So Kathy got a quick training on how to do it and then the next day we were on our own. It's just in my upper arm, so it would be pretty awkward for me to do myself. The first day, she said she closed her eyes before 'the plunge', but I didn't feel a thing (I also wasn't watching her, so I didn't know she wasn't looking), and haven't really since. I think she's even sort of getting used to it, so if anyone's ever in one of those Hollywood movie situations where someone desperately needs that crucial shot, you know who to call!

The week after the first chemo treatment I noticed a definite increase in fatigue and lack of energy as the days progressed. They had told us in no uncertain terms that this would happen, saying that I'd feel worse before I'd feel better since the chemo kills everything. By the time of my checkup on Thursday, I was starting to get dizzy if I stood up for a couple of minutes or so. Moving around made it a little better, but I got tired fast. At the checkup, Dr. Stan informed us that my red blood count was 5.3 - a new low! And low enough that he said I would need to get a transfusion. Calls were made, innocent receptionists were badgered (apparently, Dr. Stan gets what he wants), and I was set to show up at St. Joseph's Infusion Center in Elgin at 6:30 am the next morning.

Top Picture: Dave's First Day of Chemo

Right: Hooked up to the machine that goes 'Ping!'

We arrived at said time after a semi-sleepless night- a combination of anxiety about the transfusion and worrying that I'd wake up late for it- and they got straight to work. Now I had never known anything about transfusions other than what I'd seen in the movies: people laying flat on their backs, blood tubes going in one arm and out the other, lots of beeping machines, etc. The reality of it all was only slightly different: I was in a recliner chair, had only one line into my arm, and they gave me a heated blanket since I started falling asleep...mmmmm, nice. There was a beeping machine, and they did wake me up about every half hour to take my blood pressure and temperature, but other than that it was a fairly painless and nondescript way to pass the day. I needed two units of blood and a unit of platelets, so it did pass most of the day- we were there for a little more than seven hours.

I felt much better by the end of the whole process. Kathy said she could actually see more color in my face, and although I was still pretty tired, there was no dizziness upon walking out that afternoon.

Top picture: 7:00 am is too early for blood, wake me when the donuts arrive...

Right: Reading the afternoon away...



Last week I felt okay most of the time, not too many side effects other than a lot of annoying heartburn/indigestion, and the fact that by Tuesday afternoon my weight had dropped to 163 pounds. I think this was a combination of me not working up an appetite during the day, the side effect that my sense of taste seems to be blunted so nothing tastes all that good, the fact that I don't generally eat a lot anyway. It also may have been since I was trying to follow instructions to drink a lot of water I felt full most of the time anyway. In any case, I immediately started paying more attention to trying to (sensibly) put on some weight before Thursday's appointment. And it worked- by Thursday I was a more reasonable 168.

What did I eat? Pretty much anything. The doctors say the only things I need to avoid are salads and the skins of any fruit, since they contain bacteria that my weakened immune system might be susceptible to, although harmless to most people. The Mayo Clinic's website basically tells you to not hold back and to actually go for things that have more calories. Having ice cream? Add some whipped cream! Glass of milk? Make it chocolate! Vegetables? Throw on some butter or cheese sauce! Of course, they still recommend that you eat as balanced a diet as is comfortable for you. But it's pretty open.

Thursday's appointment went very well. My blood count came in at 7.7- the highest it's been since before I was even diagnosed! Dr. Stan pointed out 'Of course, it's not your blood' that was completely responsible for the jump. At this point, though, I'll take whatever I can get. The count should actually be improving slightly this week, as this Thursday I go for the second round of chemo, which will knock everything back down again.

Not much hair loss as of Friday, although there is a little more on the brush. I'm told that most of it will be gone within a week. I'm planning on letting it fall out naturally rather than shave my head. I think it'll be sort of interesting to see how it happens exactly, as long as it doesn't create a mess or drive Kathy up the wall.

So that's the latest! Again, please feel free to forward this to anyone who's interested. And if you got this forwarded to you, send me an email so I can add your address to the list. I'm planning on having another medium (one with pictures!) by the end of this week, but I'll still use this email occasionally just because I like the letter-writing thing.

Once more, thanks to everyone for the support. There's way too many people to list this time, but please know that I appreciate anything and everything you all have done for me and/or the family. By the way, if anyone would like to drop Kathy a line, she has a new email: klperrin(ampersand)att.net. She's been unbelievably supportive and brave through all of this and could use a few words of encouragement (besides from me).

Take care, and don't forget to vote!

Dave

I Woke Up This Morning....

Hi Everybody-

Okay, first off, my apologies for using the Lennys email for this bit o' news, but most of your addresses are conveniently on this list's address book, so you're all sort of in one place here. Not everyone on the Lennys list is getting this, but I tried to get all of you who we're a little closer to, and anyone might want to know what's going on.

Also, my apologies for not telling everyone personally about this, but there honestly just hasn't been time. It's been a whirlwind the last couple of weeks.

Okay, everybody ready? It's sort of bad news. On October 10th I was diagnosed with a rare form of blood cancer called Waldenstrom's Macroglobulinemia, also known as lymphoplasmacytic lymphoma, Waldenstrom's Lymphoma, or just plain ol' WM which is easiest. It accounts for less than 1% of cancers diagnosed every year, with only 1000-1500 cases a year, depending on who you Google. And by the way, before you Google, just know that there's a lot of different info out there and a lot of stuff is worse than what we've found. If you want some facts, check out the American Cancer Federation's website. Kathy (who looked at everything she could find) says that they're the most objective and fact-based.

A short history of how I arrived here: I started getting shortness of breath, fatigue, an accelerated heartbeat and occasional chest pain upon doing cardiovascular activities around August. Thinking "uh-oh, heart trouble", I went to the doctor and a battery of tests ensued, including a full bloodwork. The heart stuff was all normal, but the blood showed deficiencies in a number of areas, most disturbingly my red blood cell count, which was about half of what it should have been. This accounted for the heart/breathing difficulties; the rbcs in the blood are responsible for carrying oxygen, and since there's not enough of them, my heart was speeding up to get the oxygen my body was demanding by whatever activity I was doing.

So it was off to the Elgin Hematology/Oncology Center and another battery of tests. Lots of shots and drawing blood all the time (any aversion to needles I may have had is gone now). One by one possible problems were ruled out, until I needed to have a Bone Marrow Test to check for leukemias or lymphomas. You can look that up on wikipedia if you want to know the procedure; it doesn't sound fun (and it isn't), but it really wasn't as bad as it sounds. We had to wait a week, and then we got word. We were advised to get a second opinion, and did so at Rush Presbyterian later last week. Everyone was in agreement on the diagnosis and a course of chemotherapy treatment was set (along with a few more tests, of course).

And here we are now. I had my first regimen of chemotherapy yesterday. I was hooked up to an IV drip for about 4 hours. It was okay. Read a book, had some snacks, took a nap. I will be off work for a while, and since my immunities will be brought very low due to the chemo I need to sort of stay in a no-contact 'bubble' to avoid colds and infections which could drop me straight into the hospital. Obviously, all Lennys shows for the rest of the year have been cancelled, which is pretty disappointing. On the other hand, the doctors said that we can still practice as long as I feel up to it and no one comes to practice sick (trust me, Kathy will be checking everyone at the door!) So that'll be a bit of normalcy in this weird new world. And if all goes well we should be back from our hibernation around April, so book those 2009 shows now, people!

Some good news in all of this: Waldenstrom's is considered by my doctors to be a treatable cancer, and although there is a possibility that it will go into remission and then pop up again somewhere 5-10 years later, there are new treatments being discovered as we speak, and my treatment plan has been set up with an eye for that. Some other positives are that the doctors consider me to be in fairly good shape and think that I'll be able to come through the chemo well without the necessity of blood transfusions or whatnot. The normal onset age of this cancer is approximately 65, so much of the data is based on that. Keep that in mind if you've gotta google all of this. So if all goes well, I should be wrapped up with most of this goofiness by late winter/early spring.

That's about it. Feel free to ask me questions, and also feel free to share this email or tell anybody about this who doesn't know since I'm sure there's people I missed or don't have emails for. If you don't want to hear about any of this, don't be shy about letting me know; I won't be offended and will take you off the list. Actually, I'm hoping to put some sort of online webpage update where everyone can just look at what's going on at their leisure. It might be a little more entertaining, and I'd be able to post some pictures and stuff.

Some of the pictures would be of some of the folks who are helping out in innumerable ways these strange days who I'd like to mention and thank right now: Drs. Stan Nabrinsky (Elgin) and Stephanie Gregory (Rush Presbyterian), who have both been honest, positive, and great; the finance lady at Elgin; my kids Chris, Jeremy, and John, who have been very understanding and supportive; my mom Karen Perrin, who overcame her fear of Chicago and the tollway to take us on an occasionally hair-raising drive to Rush since our car was acting up; her mom and my grandma Vivian Hopp, for always being there for everybody; and most of all my wonderful wife Kathy, who has already spent countless hours talking about, crying, and praying about all of this with me, along with almost all of the preparations necessary for my days ahead (and also trying to make sure I stay down and keep out of it since I'm supposed to take it easy). If you see her, give her a hug or a pat on the head and tell her she's great. She might cry on you, but she does that, and it's okay.

One more thing since I mentioned hair: like a lot of chemo treatments, one side effect will be that I'll be losing mine eventually (temporarily). I've already had 4 people volunteer to shave their heads in solidarity (even my dad, who doesn't have much to shave, so that's sort of a gutsy move in my opinion). So if anyone else wants to get in on this let me know, and maybe it can turn into some sort of get-together where everyone can have a little fun. Frankly, I think y'all are all a little nuts if you do it, but I truly do appreciate the gesture and thank you all. My sis-in-law Joyce'll be doing the cutting for free, and it'll be a good 'ol time for sure. So let me know.

That's about it! Don't hestiate to drop me a note if you have any questions or concernsl. And keep the folks I mentioned above in your prayers in addition to me- they've been in on this for all of the pre-diagnosis drama, so they especially deserve it!

Thanks for listening and take care,

Dave