chemo -- only three more to go! (hopefully)

This week's chemo was business as usual, other than my Aunt Martha accompanied me on the trip since my parents were on vacation this week (unintentional conflict there -- the hospital stay pushed everything back a week, but I told my parents I'd be fine without them and they should just go enjoy their planned time off).

I had a CAT Scan last Friday, which showed that the chest mass is still shrinking. When I was diagnosed in November, it was 9x9 cm, when I was in the hospital a few weeks ago it was 4x2 cm, and now it's down to the size of a quarter. My oncologist says I'll have another scan after the 6th cycle (two sessions = 1 cycle = about 1 month). Here's the somewhat confusing part: if it shrinks significantly further, like to the size of a dime, we'll continue with another cycle of chemo. If it only shrinks a little bit, like to the size of a Canadian quarter, we'll just go on to the radiation therapy. That is to say, if the chemo is still shrinking the mass (dime size), we'll do more so it can continue doing its thing. But if it has run its course and isn't really doing anything more (Canadian quarter), we might as well stop the chemo and go to the radiation. Just for comparison, most Hodgkin's cases are treated with 6 cycles.

He also informed me that whatever caused my hospital stay has completely cleared up, and since they haven't been treating me for any infection and it's still gone, this would lend credence to it being bleomycin toxicity. So obviously, the good news there is that we probably made the right choice to discontinue the bleo, and we caught the problem early and it appears to be gone.

The fatigue seemed to hit earlier this time; I was really tired Wednesday night, and not too bad Thursday morning (I even went to work for a few hours, but ran out of steam and came home to take a nap). The eating thing is almost more annoying than the fatigue. Yesterday, I had a bagel for breakfast, applesauce and popcorn for lunch, then my brother brought over pizza for dinner so I didn't have to cook, which was cool -- I just wish I could've tasted it. I'm feeling better today as far as appetite goes, and I think I hear Li'l Chet's chicken calling my name from Convenient, so I'll wrap up this post and go have lunch now.

no one mourns the wicked... but they do give standing ovations

As mentioned previously, this weekend I went to Toronto with my friends to see Wicked, a new ("new" as of 2003) musical based on the book of the same name that tells the story of the Wicked Witch of the West and Glinda the Good before Dorothy came along. I've had the CD of the original Broadway cast for about a year, so it was great to have the visuals to go with it.

You never know what you're going to get with the touring casts, but this one was really strong -- from the principals to the chorus. Stephanie J. Block as Elphaba had an incredible set of pipes, and although I still wish we could've seen Idina Menzel in the role on Broadway, Block fit the bill perfectly.

Unfortunately, the weather put a damper on our plans. There were probably 10 minutes total the entire way there and back that it wasn't raining, and because of that we didn't stop to do any touristing in Niagara Falls on the way up. We also didn't walk around downtown Toronto, other than a few blocks to find a place to eat lunch and another few blocks to the theatre.

Further, the "adult pool" at the hotel was closed for renovation and the "family pool" was small and crawling with noisy kids -- including in the hot tub -- so we opted not to swim despite the temptation of the 130-foot indoor corkscrew waterslide. (Side note: I'm pretty sure the Delta Chelsea has been under renovation all three times I've been there, years apart.) But in typical taco fashion, we were able to pass the time simply by having coffee and dessert and talking. Other than the few hours before the show, we didn't really have much free time anyway, as we left for home Sunday morning.

But, the point of the trip was to see Wicked, which was awesome, so it was well worth it. I'll definitely see it again when it comes to Cleveland next summer (that's next summer, as in 2006), or if we ever make it to New York to see Avenue Q.

Since I knew I'd be gone this weekend, I scheduled a vacation day for Monday. On top of that, my parents are on vacation down south this week, away from the ridiculous Ohio weather, so I'll get to show off my culinary prowess to, um, myself (I actually kinda like cooking now and then, but I imagine it would get old when you have to do it every day). I was hoping I could get out and do some photography at Cascade Park on my day off, but I guess Mother Nature had other plans.

no more bleo

There was a lot of information to take in today, so I hope I can recall everything here. Let's start off by stating that I'm now taking the following medications:

• Neupogen, the injections I've been giving myself for seven days after each treatment, ever since the second session, to keep my white blood cell counts up
  
• Prednisone, for lung inflammation, which I'll be weaning off slowly over the next three weeks since I've been taking it more than seven days
  
• Bactrim, in case I had a bacterial infection last week, to keep it away; taken three times a week, Mon/Wed/Fri
  
• Acyclovir, to prevent shingles; taken twice daily

Essentially, the last two medications' purpose is to protect against infection, since the Prednisone reduces the immune system's response. I'll only be on them as long as I'm weaning off the Prednisone.

But the major report is that all the tests and cultures taken last week came back negative. No penumonia, atypical or otherwise. Obviously there was some sort of inflammation, what with the thing making me cough/gag when I took a deep breath (which has been gone since Sunday). The Prednisone is probably what made that obstruction go away, and probably also the reason I've had a bit more energy over the last week. I started taking Prednisone the same morning I had the antibiotics, and before we had the results of the bronchoscopy and all that, we were thanking the antibiotics for reducing my fever, but generally it wouldn't work that fast, so it was most likely the Prednisone doing the work.

So what about the bleomycin toxicity? From WebMD: "Rarely, this drug can also cause swelling/inflammation of the lungs (pneumonitis), which could lead to permanent lung damage (pulmonary fibrosis)." But that usually occurs after the chemo is done, sometimes even as much as five years later. In even rarer occasions, signs of toxicity will show up during treatment, such as shortness of breath (however, my only "shortness of breath" was the obstruction when I took a deep breath). It is possible that I am in the latter group.

The two options are pretty obvious: continue receiving the bleo and hope that it's not actually bleo toxicity and just some other sort of inflammation... or stop getting the bleo. The lung injury the bleo can cause is pretty scary, and as a 24-year-old going on 25, it's not exactly something one would want to live with for the rest of one's life (especially considering the high cure rate of Hodgkin's).

Of the four drugs I get for chemo (ABVD), bleomycin is probably the least important. But because toxicity is so rare -- and toxicity during treatment even rarer -- there aren't good statistics on how effective ABVD is without the B. However, we're over halfway done with my treatments, and the X-rays and CAT Scan show that the mass in my chest is shrinking (it was originally 9x9 cm, it's now 4x2 cm), so we've made it this far. Taking out the bleo at this point may not make much of a difference. Also don't forget that after the chemo is done, I'll be getting three weeks of radiation therapy right on the spot itself, which will have even more of an effect.

And even if my cancer does return at some point (whether as a result of eliminating bleo, or simply because it's possible regardless), there are further options for treatment, namely a peripheral stem cell transplantation: "A method of replacing blood-forming cells destroyed by cancer treatment. Immature blood cells (stem cells) in the circulating blood that are similar to those in the bone marrow are given to the person after treatment to help the bone marrow recover and continue producing healthy blood cells. Transplantation may be autologous (the person's blood cells saved earlier), allogeneic (blood cells donated by someone else), or syngeneic (blood cells donated by an identical twin)." Stem cell transplants, according to various WebMD articles, seem to be more effective than bone marrow transplants, though that claim is not entirely conclusive.

In other words, the good news is that the treatment I've received so far is obviously working, and even if eliminating the bleo reduces the effectiveness of my treatment, we still have further options for treating Hodgkin's. So today's chemo was business as usual, except I didn't receive bleomycin.

My oncologist, the first time we met, said "apparently your Hodgkin's has been reading the textbook, because it's been doing everything we'd expect Hodgkin's to do, so it will probably continue reading the textbook." Today we mentioned that my Hodgkin's is attempting to edit the textbook. Quoth Dr. Pohlman, "OK, but you're only allowed one complication per disease." :)

I think that's everything. Like I said, it was a lot to take in, so I hope I've accurately represented everything here (I type out these long posts not just for friends' and family's benefit, but also to help me remember what's going on, as I occasionally read back through the archive). I feel fine right now, but should be getting to bed. I'm hoping that the Prednisone will help me be less lethargic and less indecisive about eating tomorrow... we'll see.

chemo round 8 scheduled for today

I've felt fine since I came home from the hospital (actually, I felt fine in the hospital too, once they gave me antibiotics and the fever went away). They sent me home with six days of Levaquin, an antibiotic, as well as a month's supply of Prednisone, which they may take me off early. There's a slight chance I may not have chemo today, depending on what the chest X-ray shows regarding last week's atypical penumonia. But seeing as I've felt fine for the past week and the obstruction that was cutting off my throat when I took a deep breath is now gone, I'm guessing I'm fine.

I was originally scheduled for a CAT Scan today to check on the progress of my treatment (and give the docs an idea of whether 6 months will be enough), but since it's supposed to take place after the 4th cycle -- originally last Wednesday, but now today -- we've rescheduled that. So today will pretty much be business as usual, except I'll meet with my oncologists first to make sure I'm OK for treatment.

And actually, I've felt a lot better in the past week than I have in the past few months, in general. I don't know if it's the extra week off from chemo or one of the medications, but I seem to have been more motivated, less tired, and less indecisive about what to eat/what sounds good. It will be interesting to see if that carries over to tomorrow, which is traditionally the day I have the most trouble deciding what to do, including what to eat.

bad parenting

OK, this was entirely too amusing not to post:

Update on me

Hello all! I'm testing out something new here. What I've done is set up some bryanbird.com e-mail accounts to automatically forward to my friends, family, Romans, and countrymen, as well as to automatically post to my blog (so you'll see this exact same message on the blog). This way, if I'm in the hospital again (where I don't have easy internet access and could be busy with tests, meeting with doctors, sleeping, etc.), my mom can easily send e-mail updates to everyone who wants 'em. So if you *don't* want to be on this list, just let me know -- I won't be offended, really! I just rummaged through my address book and old e-mails to find everyone I thought would like to stay informed. And if you're reading this on the blog and would *like* to be on the e-mail list, let me know.

So yeah, you didn't know I was in the hospital? Well don't feel left out, because a lot of people didn't, hence this list. :) As it happened, I did have enough time before we left to post a quick blog note saying I was being admitted, but not much else. I do like keeping people informed, and it has the added bonus of me not having to repeat the story multiple times.

And if you're *really* lost and don't know that I was diagnosed with Hodgkin's Disease back in December, I apologize for missing your address in my original round of e-mails. If you check out my blog (http://blog2.bryanbird.com) and click on November 2004 in the archive, you can read the saga from the beginning. I'm over halfway done with my treatments now, but this past weekend I had a fever and they wanted to make sure it wasn't toxicity as a side effect from one of the chemo drugs. The most likely suspect, though, is "atypical" pneumonia, because the fever went away with antibiotics (which I'm still on for a few days yet). Other than this little setback, the chemo has been going well, and the masses are shrinking. Hodgkin's has a very high recovery rate; most people never have it again.

Once I'm done with the chemo in June, we'll wait a few weeks then I'll have three weeks of radiation therapy as well. So be looking toward late July for being completely done here. Thanks for everyone's concern, thoughts, prayers, mojo, all that good stuff!

-Bryan

back home

So now I can elaborate, assuming I can remember everything that was said to me in the last three days... it's been quite a lot. One possibility is "atypical pneumonia" (atypical "can be caused by viruses, fungi, bacteria, or chemicals (such as when stomach contents are inhaled into the lungs)"). So, they gave me antibiotics intravenously one night, and by morn' my temp was lower, and perfectly normal all day Tuesday and Wednesday. Hence that's the most likely cause.

BUT! since I was there anyway (and scheduled for chemo Wednesday), they went ahead and tested for the bleomycin toxicity as well. "Bleo" is the B part of the ABVD quartet of drugs I get every other week for chemotherapy. One of the *possible* side effects (each drug has a laundry list of "possible" effects) is lung damage -- to quote the original document I got back in December, "permanent scarring of the lungs may occur. Report any cough or shortness of breath to your doctor immediately."

I haven't had cough or shortness of breath, but there is some sort of "thing" that causes me to gag/cough when I take in a deep breath, e.g. to yawn or blow my nose (or the 2305983 times I had to take a deep breath for the 103598 different doctors I've seen in the past 3 days). So some sort of obstruction is definitely there. That, and the CT Scan I had Tuesday showing something, and the possibility of bleo tox are the reason for the bronchoscopy I had today. That's the thing where they drugged me up with morphine and cousin of valium and stuck a fiber optic camera up through my nose and down into my lungs to see whazzup. They also took a tissue sample while rooting around in there. Once they said "it'll go into effect in less than a minute," things went blurry and I don't remember a thing.

They sent me home with a prescription for an antibiotic to continue fighting the pneumonia-or-some-type-of-infection route, as well as prednisone for, um, well all that lung stuff prednisone does. I'll see my regular oncologist next week for more details on how we're going to proceed. I have to go back to the Clinic today for a lung test (I think like the one I had back in December, but not sure).

All this means I didn't have my scheduled chemo Wednesday -- it's now pushed back a week, as well as all subsequent sessions. That means I won't be having it the Wednesday before we trek up to Toronto! So that's a silver lining.

In other news, whilst I was in the hospital with an IV in my arm, my car at home was hit. I normally park on the street since my parents both have cars in the driveway and it just makes things easier. Never mind that there were plenty of other cars parked on the street for this idiot to hit, no no, he had to ram mine. It almost looks more like someone *swerved* into it, as it's hit more from the side than the back. The police basically told my dad "well if we find a car with damage like this on the front right side..." blah blah blah. They didn't even want to take the leftbehind broken pieces of the other car. In any case, we just recently got rid of the insurance coverage for this type of collision, since the deductible would be half the value of the car anyway. So I guess we'll be getting an estimate on the repair... new car time?

OK, I think that's everything. :)

Updated to add: I would be remiss in not thanking everyone who called and visited and e-mailed and prayed and sent mojo and all that good stuff. My parents, of course, for driving me to and from the Clinic at all hours, and my brother and his girlfriend for the book of crossword puzzles that kept me busy in-between tests and doctors (I never even got around to reading the books I brought). Not to mention the little stuffed animal hound they brought me. :D

admitted to the hospital

OK, here's what I was *going* to post:

I wish I could give more details, but every time I talk about it (even with my doctor) I get nauseous from anxiety. The basics are that I went to the Clinic's emergency room last night because I had a fever (which was increasing throughout the day). We got there around 11:30, got home around 4 a.m. Obviously didn't go to work today.

So hopefully I can give more details later. Other than feeling hot and/or cold at times, I pretty much feel fine, but the anxiety is getting to me because it's hard to think about anything else.


And now, the update:

My fever went up to 103.7, my doc called back, and now they're admitting me to the Clinic's hospital for a few nights. They want to make sure it's not "bleomycin toxicity", which can sometimes have an effect on the lungs (bleo is one of the chemo drugs I get; if it turns out to be toxicity, I won't be able to take it anymore).

I'm packing some stuff at the moment (some Dilbert books, some The Onion books), and just wanted to finish up my post here so people would know what's going on. I don't know what room I'll be in yet, but it's Building H of the Cleveland Clinic.

BOOOOOOOOOOOOOOOO.

p.s. my most recent temperature was 101.7