Monday, January 31, 2011

Day 1, Cycle 2. And oops, a bad hair day

Today I started cycle 2. Got into the infusion center pretty early (7:30) and got my blood work done. CBC results were pretty good:

  • RBC 3.98 (low, but normal is 4.4-6.38 so not terribly low)
  • Hemoglobin 12.6 (low, normal is 14.4 to 18.3 for an adult male my age. As this goes lower, I feel punkier on my workouts)
  • Hematocrit 36.9 (low, normal is 41.1 - 53.2, also another sign for workout punkiness)
  • WBC 6.14 (normal range is 3.83-9.22, still coasting off the Neulasta. Last cycle on day 8 I was down to 1.86, then rocketed up to over 8 in 4 days after the Neulasta injection)
  • Platelets 335 (normal is 164-412) This was down to 74 at the nadir of my chemo so this is another good sign that I recovered well from the last dose.
So in summary, blood chemistry is looking good, lymph nodes are shrinking, all systems go! I had a pretty mad few days of working out. Rode the bike on Thursday and Friday, two bike rides on Saturday (one doing part of Morgul/Bismark by myself, one doing a loop through Marshall and East Boulder with Susan.) Then a run with Susan on Sunday. BTW, details on all my workouts are in a Garmin site here. As an example for those of you too lazy to click through, here is info from my Saturday ride around part of MB in Superior:

So quick summary: I'm feeling pretty normal and I've been able to exercise quite a bit, which really helps me cope with all the chemo. I'm certainly feeling the chemo as my RBC chemistry gets messed up but it's not horrible. I can do stuff, just not at the level I could pre-chemo. And after the workouts my body feels pretty good so I'm pretty confident that I'm not overdoing anything. So, all good stuff on that front.

The only bump in the road is that I'm losing my hair. I've been doing a hair stress test the last week as my hair follicles were hurting which I thought meant that things were probably going on with my hair. Well, on Saturday, the engineer in me decided to do an experiment by pulling on my hair. Which I did. And it came out. Easily. In big clumps. Which  for most people would illicit a giant "OOhhhh! That's gross! And sad! And now I'm going to cry - or barf - or something..." I had a bit of that, but I also had a "Ahhh. This is cool." Kind of like the feeling you get when you pick at a scab or peel off sunburned skin. You kind of know that you shouldn't do it. But in some strange, primate grooming way, it's kind of fun. So I did some sampling around my head, thinking, well I'll just get another buzz cut and all sins will be forgiven.

Well, not really. Unless you get a real buzz cut, these mistakes in hair grooming are not covered up. In fact, they're made much more visible. So kids, don't try this at home:

So now I have a bald patch on the top of my head. And both sides. And the back (had to stress test all four quadrants to get an accurate sampling!).

And here's a clump of my newly orphaned hair:
Some care givers have to worry about their chemo patients being stuck on the couch all day with no energy. For Susan, it's more about trying to keep track of me and limiting the crazy things I do. Not an easy job, judging from the results on Saturday!

I asked Socrates what he thought. No response - he was too busy sleeping on one of Susan's sweaters. So I upped the game and threw my shorts on him. Nope, still not interested. Cats have got priorities and one of the most important ones is to sleep about 22 hours a day. So I have to respect his focus on keeping to his priorities!

Other good news is that I'm officially on schedule now to get my bone marrow transplant (following high dose chemo therapy). If all goes well over the next three weeks, I'll start the prep work for that in early March, get blasted the week of March 21st and should have a shiny new immune system by the middle of April. We're chatting with the bone marrow transplant coordinator and I'll post more info as we get it.

And oh, yeah. One more comment for Josh. Go Packers! Watched the Donald Driver video from your recent blog post with my son and both LOLed. Extremely cool. Couldn't bring myself to read the link about the kid that died. Still a bit too close to home. Hopefully I'll get my mojo together enough to watch that but not ready for that intensity just yet.

In Boulder it's going to get very cold tonight and tomorrow, so if you're local, keep warm! (And for my peeps in Cleveland, hope the incoming storm doesn't hammer you with too much snow!)

Monday, January 24, 2011

Day 15, cycle one. More good news and crazy bone pain

Howdy, all. Today is day 15 of cycle one and it's been a pretty good day so far. Items of note:
  • Looks like I will only have one more 21 day cycle of ICE. I think I misunderstood the protocol and thought I would do 4 doses. Turns out that for this protocol, the three doses at the beginning of the 21 day cycle constitute an entire cycle (in ABVD a cycle is 28 days long and consists of doses on days 1 and 14). So this means I will only get one more dose of ICE and the entire schedule will move up by six weeks. Yeah!
  • My nodes that are misbehaving are continuing to shrink. Most people would call these tumors but having seen them on an ultrasound, I prefer to think of them as misguided lymph nodes. They have normal lymphatic cells in them but they are also resident to some black hat cancer cells. So not purely a tumor like you'd get with a hard tumor cancer like prostrate or breast cancer. Anyway, they're definitely still shrinking. One has gone from marble to pea sized (4 cm -> 1.5 cm) and the other one isn't detectable by an external exam. So this means that I am responding well to the chemo which is a big first milestone to get over to pave the way for the stem cell harvest and transplant. There's no use harvesting your blood white cell stem cells if you'll still got a bunch of cancer in you so to even get into that program you have to be NED/CR (No Evidence of Disease, Complete Response). So this is all really good news.
  • I had a crazy day last week from the Neulasta, which is given to boost your WBCs after a dose of chemo. One night last week I had some weird bone pain. One manifestation was that I could feel my heart beating in my sternum and my lower back. I would stand up, walk around and then sit down and could feel my heart beating - and my bones would hurt with each beat of my heart. Not fun and sort of scary. The next issue was that I stood up from a chair in the evening and felt shooting pains through both my hits. Felt like I had broken my pelvis in two places. Ouch! And the next day I woke up and felt fine. Went for a spin on the stationary bike, had a normal day at work, no issues. And over a 4 day period starting with that crazy day, my WBCs when from 1.96 to 8.02. (normal is 4-9). So my bone marrow has been busy producing new white blood cells. My oncologist noted that this means I have very healthy bone marrow since it was so responsive to the Neulasta. Yeah! This is another good indicator that I will come out of the stem cell transplant process and recover well.
So the summary is that things are going well and my initial treatment will be six weeks shorter than I thought. Now we've got to get going on the whole stem cell transplant process. I've read a handout and have some sense for what's next, but we'll get some training on the details so we're well informed before we start that protocol. I'll keep you up to date as we lock in the specifics.

Many folks have asked how they can help and there is one area where you may be able to lend a hand. During the 4-6 week period after the transplant I will hopefully be at home (not in the hospital!) but I will need 7x24 babysitting since I won't be able to drive and need someone nearby in case I suddenly take a turn for the worse. When your immune system is so depressed you can get sick pretty quickly and if that happens, I'll need someone to drive me down to Denver to the oncology office. We'll definitely ask for help as needed to give Susan and other family members a break from being my baby sitter, so think about whether your schedule would allow being a during-the-day chauffeur during a period that will probably run mid-March to mid-April.

Ok, that's it for now. Have a good Monday, and enjoy the fact that your bone marrow is making happy, healthy white blood cells without making you feel like you just fractured your hips in multiple places!

Tuesday, January 18, 2011

week 1 - bumps are shrinking. Take that, bitch!

Had a pretty good day today. But before the big news, a summary of last week. I did the ICE protocol last week. Kind of a pain logistically. With ABVD you get it all in a 3-4 hour period, typically on monday. With ICE, you get it over 3 days.  So I was in the chemo center 4 days in a row. 3 infusions, including an overnight infusion administered by a little pump in a fanny pack I had to take home with me. Then a WBC booster shot on Thursday. And I felt kind of punky through the weekend. Luckily the chemo center is about 5 minutes from my office and only 15 minutes from home so it's really easy to get over there.

But the good news is that the two bumps on my neck are definitely shrinking!!! I went into the oncologist this morning and one of them is a bit smaller and the other one has pretty much disappeared. Man, when these drugs work, they WORK! And this week, I'm feeling pretty much back to normal. Sleeping well, GI plumbing pretty much back to normal (I HATE being constipated..) and I'm working out with moderate energy (10 mile bike Saturday, 2 mile run Sunday, 6 mile ride yesterday, 20 minutes on the running treadmill tonight).

I will probably lose my hair but that typically doesn't happen for another few weeks. So for now, I'm feeling ok, feeling really good that the cancer cells are getting their asses handed to them by the chemo and I look pretty normal (well, as normal as I ever look).

So that's the quick status. I've got some other more philosophical ramblings I'll post here in a bit but for now, that's it. Hope you're  having a good week!

Sunday, January 9, 2011

uh-oh. Failed the lumps and bumps test. More chemo starting tomorrow

 Well, shit. About a month ago I went in for my monthly checkup and my oncologist felt some enlarged nodes in my neck. Turns out I have some more malignant cells growing in my neck. The oncologist thinks that they're probably holdovers from the cancer I had last spring (as opposed to new stuff that started in my bone marrow).

Getting a recurrence this quickly isn't great news and the next round of chemo to root it out will be more extreme than the treatment I had last spring and summer. Here's the game plan:
  • 3 months of ICE, a protocol typically used for non-Hodgkins to get rid of this latest set of malignancies. I'll probably tolerate this ok and will be able to continue to work. Will probably lost most of my hair (again).
  • Harvest my white blood cells and separate out some white cell stem cells.
  • 5 days of very intensive chemo that will really wipe out my immune system. After this I will be pretty beat up and without getting a white blood cell transplant (from myself to myself) I'd be at great risk for a whole host of nasty infections.
  • Get my own white blood cells back and regrow my immune system (4-6 weeks of feeling pretty beat up while I recover from the high dose chemo). I will take a 2 month leave of absence which will allow me to recover at home without much exposure to bugs that could get me sick. I envision lots of walks and  hopefully (slow) bike rides to help me recover my health through this period.
  • Participate in a clinical trial over 21 weeks that gives me a maintenance dose of a very successful new drug for getting rid of any residual cancer cells. At this point I will be back to work. I'm not sure if this maintenance dose will prevent me from regrowing  my hair or not and what impact the dose will have on my blood chemistry.
  • Live a long time!
During the last month I went through the standard set of diagnostic and staging activities -PET scan, core biopsy, echo cardiogram, PFT for lung function, bone marrow biopsy, PICC line insertion. The good news it that I'm pretty recovered from the last chemo protocol - all my numbers are equivalent to where I was last February. So I should be able to tolerate this next round of chemo well. And the cancer is much more localized than it was last February and will hopefully respond well to the ICE protocol I'll receive here over the next few months.

As you can no doubt guess, this has really rocked our world and I've spent the last month or so coming to grips with this next step of the journey. It's been a pretty scary, sad and angry time for both Susan and I. We've gradually let our friends and family know what's going on and have received great support and love. With this post, we've now gone completely public with our status. I'll probably start blogging some more as it does provide a way to express what I'm feeling and it's also a great way to keep people in the loop on how things are going.

One perspective I've gained that has helped a lot is that this latest treatment doesn't need to cure me for 30 years. It just needs to keep me healthy long enough for the next advance in medicine to combat whatever strange things happen in my lymphatic system. That perspective has kept me from going totally psycho over worrying if this next treatment can do what the previous ABVD regimen could not do, namely keep these malignant cells from multiplying in my lymphatic system. I've also been doing a bunch of guided meditation to think really positive thoughts about my health and longevity to help my body do the right thing.

So this pretty much sucks but it is what it is. Tomorrow I'm back in the big chair for more medicine that will help me get better! So I'm psyched to get that going and feel the nodes in my neck shrink back down to normal levels.

That's it for now. Send positive energy my way and I'll keep you up to date on how things go!