new music events

I've added some entries to my birdwatching page, which lists my upcoming music activities. As mentioned below, I'm playing at the historical society's ice cream social next Sunday, at 1:15 and 2:10ish (about half an hour each).

I've also agreed to play for my first post-hiatus/post-chemo musical, A Funny Thing Happened on the Way to the Forum, which one of my friends is directing.

Perhaps coolest on the list is singing the Star-Spangled Banner at Jacobs Field come this September. I'm now the accompanist for the Cleveland Athletic Club Singers, who rehearse once a week and perform two concerts a year. But since the Banner will be sung a cappella, I offered (asked?) to sing instead. Yay.

rads

I started my "rads" today (that's what us in-the-know Hodgkin's folks on the Hodgkin's e-mail list call it). Because of the protocol of the study I'm a part of, I couldn't get radiation until my white blood cell count was at least 3, so they had to do a blood test today (last week it was too low).

It took TWO AND A HALF HOURS to get my blood test results. Apparently the somethingorother machine was down and someone didn't tell someone, so they gave me a free lunch coupon to pass the time. But seeing as I'll be missing work for the next 19 mornings, even though I got home at 3:00 I went in for a few hours to catch up.

As I said before, there shouldn't be any side effects for a few weeks yet, so the treatment was painless. And because of the placement of my cancer, I don't even have to change into a hospital gown; I just take my shirt off.

Other things going on in my life:

• Cedar Point this Wednesday after work
• Elyria fireworks this Friday at Cascade Park; always a good show in a great setting
• going up to the cottage this weekend
• no work Monday, no radiation Monday!
• Cedar Point next Wednesday after work with a group of friends
• Relay For Life, Friday, July 8 (evening to Saturday morning) with the group from my church; this year it's in honor of me and in memory of a woman from our church who lost a battle with cancer last year
• Ice Cream Social with the Lorain County Historical Society, at which I'll be playing the keyboard (twice, so I guess you'll just have to stay the whole time). The ice cream social is a big annual fundraiser for the Society and takes place outside in the shade of the hickory trees. The $5 ticket includes your choice of pie/cake and ice cream and a tour of the house museum (which is now air conditioned). Hot dogs, popcorn, root beer floats, chips, sloppy joes, and freshly squeezed lemonade are also for sale. Uncle Sam top hats and early 20th Century speech patterns optional, dagnabbit.
• Monday, July 25: last day of radiation!

no more chemo!

Hey there everyone, just another e-mail update to let you know I'm DONE WITH CHEMO!! I start radiation therapy Monday.

If you haven't been following my blog (http://blog2.bryanbird.com), a bit of explanation: chemotherapy goes after rapidly reproducing cells, which includes cancer cells (and hair, hence the hair loss). But since the cells toward the center of the tumor are older and have a slower reproduction rate, the chemo may not tackle them. The deal with Hodgkin's Disease NS (nodular sclerosis) is that it leaves scar tissue which is indistinguishable from cancer on the CAT Scan. So, just to make sure the cancer is gone, they go in with radiation as well. Radiation uses three beams at 1/3 dose, and where the three beams overlap gets the full impact (thus less exposure to the surrounding, healthy areas). The radiation damages the DNA of the cells in that area, and healthy cells are able to repair themselves, while cancer cells aren't specialized enough to do so -- this damage is passed on as the cancer cells reproduce, the damage accumulates, and eventually they die.

Each treatment takes about 15 minutes, and I've been tattooed with three tiny dots so they know where to position me each time. I have to go in Monday through Friday for 20 days (not including July 4th). Unfortunately that means I have to drive all the way to the Cleveland Clinic main campus all those days... but oh well. Monday's appointment is at 10:30, and then we can pick a regular time. They're there as early as 7 a.m., but I doubt I'll be doing that. It's mostly a question of how much work I want to miss vs. what's most convenient.

Side effects usually show up during the third week and last about two weeks after treatment ends. Some people experience more than others; it just depends. There is generally some fatigue, but nothing like it was with the chemo. The most common effect is a sunburn-like red area on the chest where the radiation is strongest; for this, they gave me some special cream. Also, since it's so close to the esophagus, there will probably be similar "burning" inside, so it may feel like I have a lump in my throat or be painful to swallow. They gave me a powder to mix with water and drink 4 times a day if this happens, and also said to avoid acidic foods like spaghetti sauce and orange juice.

So I guess that's about it for now. I'm feeling fine otherwise and am so glad I don't have to go through another day of chemo fatigue. Thanks for all the thoughts, prayers, mojo, cards, phone calls, e- mails, blog postings, haiku and cuneiform tablets... we're almost done!

-Bryan

a bit more information

Today my onc said the treatment would be 18 days, which is the first I'd heard anything beyond 3 weeks (I guess it was just "most people" who get 3 weeks, i.e. 15 days). Thursday I'll find out the exact schedule.

They also said -- and said that the radiation oncologist tomorrow will also say this -- that the side effect warnings are much less worrisome today because of improved technology. Previously you'd have one beam of a certain dose aimed at the area, but now you'll have three beams of 1/3 dose aimed at the spot, so just that spot (where the beams overlap) gets the full dose and the surrounding areas get less. Being near the heart and lungs, that's rather important.

My understanding of chemo vs. radiation was pretty accurate. The CAT Scan shows the tumor area hasn't shrunk much more since the CAT Scan I had in April, which means the chemo has done all it can. However, there's no way to tell if what's left is still malignant or merely scar tissue, which is why we go in with radiation to make extra double sure. Better to take care of everything the first time around, than to take a chance and let it come back and have to do a stem cell transplant or something.

I'll probably send out another mass e-mail update tomorrow. Stay tuned...

NO MORE CHEMO

If you've been following my blog, you know that I finished my 6th cycle of chemo two weeks ago but there was a possibility I may need more. Basically, if the chemo is still shrinking the mass, we'll keep doing it; if not, we'll go on to radiation. Most people only get six cycles.

One of my oncologists called me today at work to let me know... NO MORE CHEMO!!!

I'll still be meeting with them tomorrow to go over the CAT Scan and have the usual blood work and X-Ray. Then on Thursday I'm meeting with the radiation oncologist for the first time, and we'll set up my radiation schedule, which should be at least two weeks away yet.

As I understand it, chemo works by inhibiting the reproduction of rapidly reproducing cells, which includes cancer cells (as well as hair). Since Hodgkin's Disease has a high "growth fraction," it's more easily treatable with chemotherapy. But because the center of the tumor is made of older cells that reproduce more slowly, the chemo has less effect. The radiation, focused specifically on the tumor area, instead damages the DNA of the cells. Normal healthy cells will repair themselves, but cancer cells are not developed and specialized into a specific type of cell ("differentiated"), so they don't quite have the mechanism to repair such low-level damage. This is inherited through cell reproduction and the damage is accumulated until they reproduce more slowly or die.

Hopefully the rad onc will be able to give me more of an idea of what to expect as far as side effects are concerned.

The fatigue hit pretty hard last time; I'm glad I don't have to do that again. HOORAY.

More details tomorrow, I'm sure...

i hope that was the last one

Wouldn't it figure that my last (hopefully) chemo session would get screwed up? One of my chemo drugs is red and comes in two large syringes that are inserted into my IV tube. Another drug comes in the same type of syringe but is clear.

The pharmacy technician filled all three with the red drug, but labeled the third one as the clear one. This also made it past two pharmacists who check these things, possibly because the red drug is often given with three syringes (other types of chemo use a higher dose than I get).

Because of the anxiety I've had regarding this drug previously (remember the deer-in-the-headlights nurse?), I've taken to paying more attention to watching TV and eating my popsicles than thinking about my treatment. When the nurse got to the third syringe of the red drug, she noticed that the clear drug was nowhere to be found... but went ahead with the third syringe of red anyway. I, thinking they had simply split the correct amount into three syringes instead of two for some reason, asked, "Is it the same amount as usual?" and she said yes.

Apparently that was incorrect. I got 150% of what I should have. I'm not even sure at which point I was the most pissed off, whether at the pharmacy tech who filled it wrong, or the pharmacist who didn't catch the error, or myself for not noticing the mistake sooner, or the nurse who didn't show me the labels before giving me the drugs (which they're required to do, and I would've caught the error had she showed them to me).

My oncologist said he didn't think it would be a problem from a safety standpoint, because as I said other patients get more than my dosage with other types of chemo. However, because it would lower my white blood cell count more than usual, he opted not to give me the missing clear drug lest it lower the WBC count even more (and possibly not be able to receive chemo again in 2 weeks if necessary, aside from leaving me more vulnerable to disease/infection).

Nothing has been different afterward, although this was the most tired I've been. I didn't work at all Thursday and only worked 3 hours on Friday. I'm still not quite with it yet. I have a CAT Scan next Friday, and we'll see the results the following Wednesday, at which point I'll either go home or start another cycle of chemo.

I hope to God that was my last chemo. Let's just get on to the radiation and be done with it!

speed

Well, I joined the ranks of most other Americans today by getting my first speeding ticket. I've been driving to work in Grafton for over two years, and have never seen a cop clocking cars. But last week I looked at a map and found I could take a different road which was a little faster because there weren't any school buses stopping and no people driving 10 miles under the speed limit, as there are along Route 57.

Unfortunately, the street that connects to said road is a residential, 25 mph street that I thought was 35. And there happens to be a driveway to a city park there, which is where the cop was stationed. I'll call tomorrow to find out how much the fine is.

In other news, tonight I took advantage of my season pass to Cedar Point and went with a friend after work. We rode Top Thrill Dragster, Millennium Force, maXair, and Raptor... in under 3 hours. If you're not familiar with CP, those are pretty much the top four rides in the park at the moment, with pretty long wait times. We waited, respectively, 45 minutes, 1 hour, 30 minutes, and 5 minutes -- and I got to sit in the front on Millennium Force and Raptor for the first time (that usually creates a longer wait too). For comparison, last time we waited almost 2 hours for Millennium Force.

The weather was great too. And now that I've been to Cedar Point twice this summer, the cost of my season pass has broken even and every trip from here on out is "free". :)