Give a Little Bit

Hi Everyone!

I was gonna try to get a whole bunch of different stuff in on this entry, but I'll wait for the latest numbers to do all of that and get to something equally important that's a little more time-sensitive.

I'm going to be involved with the American Cancer Society's Relay For Life this year. It's an all night event that will be held at Elgin Community College on June 12th/13th, from 6 pm to 6 am. There are a number of different activities all through the night, from honoring cancer survivors and memorials for those who have lost their battles, to more light-hearted things like live bands, food eating contests and such.

The main focus of the Relay is to raise funds for the American Cancer Society through team pledges. My sister Amy is the captain of our team, which is called "Where's Waldenstrom's"; in addition to fundraising, I'm hoping to come in contact with some other local people with WM and compare notes. The teams will be having at least one member on ECC's track all through the night to symbolize the fight against cancer, which never sleeps.

SO- if you would like to help with this event, there's plenty of things you can do:

- you can pledge a donation to our team by going to the website at www.relayforlifeecc.com and click on the Where's Waldenstrom team. Donate to the team, or pick the person you know and help them make their goal. You can donate directly online, or print out a form to send a check to the local office.

- you can join the team! We'll be there all night, and Amy assures me that it's a fun time (I'm also thinking that breakfast has to be involved somehow). So if you'd like to be involved and want to collect pledges as part of the team, just click on 'join team' and sign up and you're in. If you have any questions just contact one of us!

- you can come to the event itself! There's no charge, and there will be all kinds of activities going on all night, including at least one set by the Lennys!

I didn't actually use any of the ACS services myself, but I have been extremely fortunate. I have good health insurance, I live very close to my treatment center, I had the best home nurse/caregiver I could have in Kathy, and I had the support of all of you! But there are plenty of other people who need the services the ACS provides, and they also support research for a cure, which I can definitely use- even though my cancer is considered to be in remission, the malignant cells are still present and there is no known cure to get rid of them completely at this time.

So if you can contribute anything, please do at www.relayforlifeecc.com. Times being what they are, we know that not everyone will be able to donate much, but anything and everything you can do will be appreciated! And come on out and join us on June 12th!

Thanks!

Dave

Everything's Gonna Turn Out Great

Welcome back!
All is well here- things are getting normaller and normaller all the time! I went back to work last week (limited hours for now), went grocery shopping, to The Venue in Hammond, to a movie (Watchmen), and all sorts of places I haven't been in a long while. I'm still getting used to it, but it's all great. I don't even mind all of the idiots on the road!

Oh, here's those latest charts I promised:

As you can see, the white blood is within the normal range, the platelets are rocketing up there, and the hemoglobin is getting there. .3 to go to get to the low end of normal! The next doctor visit isn't for a little more than a week from now when I go in for the first of the Rituxan treatments, so all the levels should be way up there by then. Of course, the treatment will knock them down a bit, but supposedly not nearly as much as the normal chemos did.

Here's another bit of back to normal- The Lennys have their first show since last fall this Saturday! Here's the ad:

I actually scheduled this show way back in December after the second bone marrow test results indicated that everything was on track. There have been a few snags since then, the worst of which was the temporary nerve damage that was caused by one of the chemo chemicals, but we're ready to go! We've had plenty of time to practice over the last couple of months, so we've got over a dozen songs we haven't played in public yet. We probably won't play all of them at this show; that way we'll have new stuff for the next couple of shows.

Obviously, our photos have been altered for the above picture. While my hair has been growing back, and I'm told that sometimes it will grow back with a different color or texture, I don't have an afro a la Freddie 'Boom Boom' Washington.

Here's a photo from a recent practice:

As you can see, it was a bad hair day. I'll probably get it cut before the show. If you've got any questions about where it is and you're not on our email list, let me know. The more the merrier!

See you out and about!

Dave

Well, well, well

Hi all!

Great news!

But first, let me apologize; I have been remiss(ion) in my aim to keep updating this blog updated lately. It's been my sincere (re)mission to report everything that's been going on, but there's been a lot of things going on lately and I kept putting it off since there was always something else happening in a day or two that I didn't want to (re)miss(ion) out on...

Have you guessed the great news yet? That's right, I have a new hat!

Oh yeah, I also have official word that the cancer is in remission!

OK, there's a few catches. I will still have to go for 'maintenance Rituxan' every two months for the next two years; the upside of that is that Rituxan, unlike the other chemo chemicals I was getting, should have very few, if any, side effects. Also, we heard it's developed with mouse antibodies, which explains all of those cats hanging around my house. At least that'll solve the chipmunk problem.

I'll also be known to some as a "cancer survivor". I'm not sure I care for that title. It's not like I go around saying that I'm a chicken pox survivor, or bragging that I've survived all the major earthquakes. I'm just Dave.

And Dave is getting back to normal.

Here's a bunch of stuff that's happened in the last couple of weeks:

-6th chemo - last one and done!

-last batch of shots from Kathy, who has done a great jab/job for the last number of months...

-another bone marrow test - ouch!

-more doctor visits, and another trip in to Rush. It's sort of ironic that patience is one of things I've learned most about, and the final confirmation that the cancer is in remission came from a place called 'Rush'...

-the picc line has been taken out - finally!

-there's another doctor visit on Monday, so I'll post the best charts ever that afternoon, promise!

There's been a few more challenges lately as well:

-on one of my rare car trip outtings, I accidentally rolled down the passenger window in Kathy's van. Bad move. It's been broken for awhile; it rolls down, but usually not up. We tried to pull it up, but no dice. After leaving it open all night, Kathy started the van the next morning and tried the button out of habit, and it went right up, saving a probably expensive trip later on to the repair shop... We'll have to get it fixed eventually, but right now would not be the best time.

-Kathy had some tests done which initially showed a possibility that she had some sort of autoimmune disease. This caused a few anxious days while we waited for further test results, since she might have given me something while my immune system was down. To our relief, she's just fine, and the data showed that there was no serious problems...

-Kathy's dad came down with double pneumonia and suffered a mild myocardial infarction (that's a fancy way to say heart attack) on Super Bowl sunday. She had tried to call him during the day a number of times since we had some groceries to take over, but when he hadn't called back by that evening, she decided to stop by anyway and found him laying on the floor, but still conscious. He went to the hospital for about a week, and is now at a rehabilitation center to regain his strength.

So to all of you that have been praying for me, I'd like to say 'thanks' to you, and would request that you give a big 'Thanks!" as well, and add Kathy's dad (Bill Dohm) to your list of people who could use a little help.

Speaking of which, my brother Tim could use a little help finding a job. He was laid off a couple of weeks ago and is actively searching, and said I could mention it here. So if anyone needs a someone for managing accounts receivable and/or managing a department of that type of work that looks somewhat like me but with more hair, let me know. Or you can contact him directly at firecatjoker@yahoo.com.

In spite of all these latest small and large tribulations, I realize that I'm blessed to be here to deal with them. And although they've been frustrating at times, it's nice to talk to Kathy about something other than me, me, me all the time.

A big thanks to everyone who voted for The Lennys in the Best of the Burbs contest nominations in January! We made it into the finals in every category that we were nominated for! Of course, if you kept voting you know that, and hopefully you did. If not, get out there and vote- the finals voting is open until March 15th, so there's still another couple of weeks. You can- and should- vote once a day. If you haven't voted yet, go to nitelife.com and get started!

Here's those categories again:

Vote for The Lennys under:
-Best Classic Rock Band
-Best Cover Band
-Best Musician - Bass (Dave Perrin)
-Best Musician - Drums (John Perrin)
-Best Musician - Guitar (Cory Devlin)

Vote for John's band The Takeouts under:
-Best New Band
-Best Under-21 Band
-Best Local Band Original Album
-Best Local Band Original Song

And vote for Cory's other band After the Fight:

-Best Alternative Band

We thank you for your support! And if anyone is interested, the awards ceremony/banquet is Sunday, March 22nd, and open to everyone! A few of us went to it once and it was pretty fun, so let me know if you're interested and we could all meet up there and see if we won anything!

That's plenty for now, I think! If I think of anything reeeeealllly important, I'll update this weekend, otherwise I'll check in with the latest and greatest on Monday afternoon--

Dave

Reasons To Be Cheerful, Part 3

Hello again! It's been a busy couple of weeks- the best of times and the worst of times if you need a quote. Actually, it hasn't exactly been the worst of times, but they've been worrisome all the same.

Since the graphs are first today, let me talk about me. I am still doing well, as the graphs show if you look at them right. I had the last chemotherapy treatment- yaaaaaayyyyyyy- two weeks ago. Something that I've learned that I was wrong about through all of this: I had the impression that the chemos and their aftereffects would get easier as I went through more of them. Nope! They were all bleah. Not horrible- I still think that other people have had it worse from the stories I've heard, but definitely not my idea of fun. But I'm 6-and-0 now, and better for it!

This post was started and put off too long... I've got better news, so I'm starting over with a new one. But since the new charts are still pretty good, we'll post this one too...

Down With Disease

Hi Everyone!

A big thanks to everyone who dropped Kathy a birthday greeting over the weekend! She was very surprised, although I was immediately suspected as having a hand in the proceedings (probably by around 8 am). She received almost 60 emails/ecards and had a lot of fun hearing from you all. It was a big part of a restful and happy birthday weekend all around, so again, many thanks!

Hey, Monday's blood test results are in, and they're.... down!

I was definitely hoping for an upturn, specifically in hemoglobin, but it was down to 7.8 this week. Kathy's been especially watchful since the fevers a couple of weeks ago, almost to the point of over-analyzing things, but she said it seemed like I've been less energetic over the last couple of weeks. Over the weekend I did notice that I was getting a little dizzy after running up the stairs, or after the short time that I was 'allowed' to go out and clear the driveway a bit, so I wasn't entirely surprised or disappointed. However, Dr. Stan was neither surprised nor overly concerned, and commented that the chemo normally is at work for 10-14 days after infusion, and Monday would have been the 14th day. It also depends on the 'booster' shots you get every week, so that could have been a factor in the higher levels of earlier weeks.

He also informed us that the CHOP-R chemo regimen that I'm getting is fairly aggressive and will naturally wear a person down over time, which is why they rarely give anyone more than 6 rounds of it; if a cancer is particularily aggressive they might give 8. Fortunately the bone marrow test in December showed significant progress and this coming Monday will be my last treatment! Then after a couple weeks recovery I'll have one more bone marrow test to (hopefully) confirm the suppression/elimination of the WM, and then it's back to 'normal'!

I don't know how often I'll need to check in for blood tests, but the new 'normal' will include monthly B12 shots (supposedly forever) and going in for a 3-hour infusion of Rituxan every couple of months (for two years). I'm good with that, since normal will also include being able to leave the house, growing hair back (Chicago area winters are not the best time to be bald, I've found), getting back to work, and of course returning with with the Lennys for more shows!

Meanwhile, it's more of the same this week; I had to get 3 shots on Monday, and we got 5 more to take home this week. But my sense of taste seems to be completely back to normal this week, which always seems to make my appetite better, even better than when I'm taking the Prednisone which is supposed to increase it.

Anyway, here's some updated charts for you numbers geeks:

By the way, one of the things I've amused myself with over the last week or so was fixing our dryer when it conked out, so if anyone's having dryer problems, feel free to just drop it off and I'll work on it for you...

Hey, are you still voting daily at nitelife.org for the our Best of the Burbs categories? There's only about a week left until the nominations are closed, so please help us out by voting every day! Here's those categories again:

Vote for The Lennys under:

-Best Classic Rock Band

-Best Cover Band

-Best Musician - Bass (Dave Perrin)

-Best Musician - Drums (John Perrin)

-Best Musician - Guitar (Cory Devlin)

Vote for The Takeouts under:

-Best New Band

-Best Under-21 Band

-Best Local Band Original Album

-Best Local Band Original Song

Those last two are new additions to the categories- John's band The Takeouts just finished recording their first ep last weekend, and it sounds really good! They'll be having a 'release party' for it in the next couple of months, but get on the bandwagon early and vote for it now!

And let me know if any of you win one of the daily raffles that you're entered in every day that you vote! We haven't won anything yet, but I'd still like to know what the prizes are!

Thanks!

Vote early, vote often, vote Lennys!

Hi all,

Well, last week's post was mostly about that fever scare, so I thought I'd do something a little more light this week. But before I get to that, you probably heard about Patrick Swayze and his battle with pancreatic cancer, and how he was in the hospital on antibiotics this week. That's the same thing we were concerned about. It's all about the immune system.

That said, my numbers were all down this week, as was to be expected for a week after the last chemo treatment. They were actually a little lower than I wanted them to be, so I was sort of bummed about that, but Dr. Stan wasn't concerned and still thinks things are going well, and that I'll be able to start getting back to normal not too long after the last chemo round. I guess that I'm probably just getting more impatient as we're getting towards the end of the scheduled chemo sessions. I don't think I counted on how lousy it all makes you feel with all of the little side effects, and figured I'd be able to be up and around a lot quicker. But one thing this has taught me has been to learn to be more patient, especially in matters I can't control. Like WM.

But enough of all that. I'm feeling better, and it's time for me to share some other things I've learned so far in this whole experience:


THE TOP TEN GOOD THINGS ABOUT HAVING CANCER!

10. Heated blankets are mmmmmnice when you're in for an 8-hour transfusion

9. I'm a shoo-in to win the weight loss challenge

8. Currently learning Japanese through daily Godzilla movie marathons

7. Distinguished company:

6. Home confinement= pants are optional!

5. Finally feel like I'm getting my money's worth from all those years of insurance premiums

4. Saved $9 by not being able to go out to that crummy "Day the Earth Stood Still" remake

3. Hours of fun trying to find something that rhymes with "Macroglobulinemia"

2. No bad hair days

1. Hmmmm. Well, I thought I had ten, but I guess not. Tell you what, send me an email with anything you can come up with, and I'll compile 'em for next time...

And now for some REALLY good news!


The Lennys will be playing our first show of '09 on Saturday, March 14th, at Mad Maggie's in Elgin! This is a brand-new place right downtown with multi-levels of entertainment and a great sound system! We had a date scheduled here for November that we had to postpone/cancel, but we'll definitely make this new date worth the wait!

In the meantime, I'd like to ask for some help! It's time for Suburban Nitelife's 'Best of the Burbs' contest, and we were alerted by one of our friends that we'd been nominated for a bunch of categories! But we've got to keep getting votes to stay in the race, so here's how you can help out:

-Go to their website at nitelife.org

-You'll need to register and set yourself up with a username and password if you don't have one

-Click into the 'Best of the Burbs' menu

-Vote!

The Lennys are nominated in the following categories:
-Best Cover Band
-Best Classic Rock Band
-Best Musician Bass (Dave)
-Best Musician Drummer (Johnny)

Cory was nominated as best guitarist under his other band's name, so rather than split his chances by nominating him with us, we're just voting for him with After the Fight!

Also, John's other band has been nominated for Best New Band and Best Under 21 Band, so check into those categories and vote for "The Takeouts"!

The winners don't actually win anything but bragging rights, but that's good enough for us! But they say that there's daily prizes randomly awarded to voters, so vote every day, and good luck!

That's about it for now. I'll post some new charts next Monday with all the latest numbers- it's always more fun to show charts with improvement, and I'm confident about next week!

Cold Turkey

Hey all-

'Cold Turkey'? What's this, a post about Christmas dinner leftovers? Nah, we finished most of those by New Years. It's more in reference to the 'temperature's rising, fever is high' first line of the song, which is pretty much what happened to me within 48 hours of my last post of how everything was going oh so well.

Now the one thing that these doctors and staff will tell you is to watch out for infection. In fact, I think they want you to worry about that more than the cancer itself. So fevers? Bad, generally speaking. Dr. Stan's rule of thumb warning from the beginning has been that if my temperature got to 100.5, I'd be heading off to the hospital to get hooked up to an IV of antibiotics. So when I was sort of sluggish and out of it on New Year's Eve (not even making it to midnight for the first time in probably 37 years), then woke up with a low fever on New Year's Day, it was not the best way to start 2009.

It was a fairly low fever, usually below 100, but sometimes getting down to normal levels. We checked with the doctor 'on call' for the holiday, and got pretty much the same mantra: nothing to really worry about, give us a call if it gets to 100.5. Friday the fever hung in there, and after calling the office we found that this week's Leukine shots (for boosting the white blood cells) often have the side effect of a low grade fever. Would have been nice to know that in advance! On the other hand, I have had these shots before, and don't seem to have had the fever before. We'll ask more about that Monday. At any rate, Friday was the last of the shots, and Saturday night saw the last of the fever. I can take the fever or the indigestion or the numbness in the fingers, as long as I know it's to be expected or a possibility.

LATER....

The fifth chemo session was Monday; my temperature was 97 degrees, and everything went as fine as it could go. I'm usually pretty alert until they put a shot of Benedryl in the IV, then I'm out for a while. Went home and slept a lot afterwards, but no new fever. We've got more Leukine shots this week, but won't be starting them until Thursday, probably because my white blood cells were up to 6.7 over last week's 2.1. The chemo will knock it back down over the course of the week, so starting a little later makes sense. It'll be interesting to see if the fever comes back when the shots commence. In the meantime, there's the anti-nausea pills (Emend), and the Prednisone and all of its less-than-stellar side effects for 5 days. Bleah. No need to go into details, but it really makes you appreciate the time when you're NOT taking it.

I mentioned numbness earlier on: I started to experience some of that in my fingertips a couple of weeks ago and mentioned it at the next checkup. Dr. Stan says it's not an unusual side effect of one of the drugs in my chemo treatment (Oncovin aka Vincristine). You can look it up in Wikipedia to read about all of the side effects, but the only thing I'm getting so far is a little numbness and weakness in my left hand. To prevent further complications, the Oncovin was not included in Monday's chemo and will be left out for the last one as well, and I'm taking a B complex vitamin daily to correct the problem. It's more of an occasional nuisance than a real problem; it doesn't effect my typing, but it makes using the touchpad unusual sometimes.

But in spite of this new bump in the road all is well, the lines on the graphs are still going the right way, and we're five down, one to go!

Alleluia!