Thursday, November 24, 2011

Happy Thanksgiving! And hi-tech kitty making phone calls

Susan's off singing at church so this morning it's just me and the cat kicking around the house. As is fairly typical of most families, we spent a bit of time this morning on the phone catching up with remote relatives. Caitlyn gave Athena a call and got caught up on the goings on of Mrs. Grimsby-Whiskers, aka Knives Chow, aka Athena Popidopalus Florentine. When you don't have an oppose-able thumb it's a bit tough to hold a phone but the Bluetooth headset works pretty well as long as you stay still in your kitty bed:

I for one am pretty happy to be not dying of lymphoma. That's pretty cool! I've dropped that line on people a couple of times this week and it's a bit of a conversation stopper so I guess I should mellow it out a bit. Maybe something like: "Yeah, I've got a lot to be thankful for this season." So here's my list of things I'm thankful for, in perhaps something like priority order:

  • Not dying. Yup, that's #1, for sure
  • Loving family (including the high-tech kitty pictured above)
  • Great friends, both socially and at work
  • Riding my bikes
  • Hair
Well, that's probably enough for now. I've got a date with some leaf raking, then a bike ride, then off to some friends' house for thanksgiving celebrations. I hope that today you take a moment to appreciate the good things in your life. I've had my share of shitstorms in the last couple of years but today things are looking pretty good so I'm going to focus on that and enjoy the day.

BTW, Athena is a bit shy about giving out her cell phone # so I'm afraid I can't share that with you. If you need to chat with her, drop Susan and I a note and we'll see if we can get her to call you back. No promises, though :)

Sunday, November 13, 2011

Dodging the Sword of Damocles - another clean CAT scan

Well, it's been 3 months since my last post. So - hello! Life is going pretty well and we had another big milestone this past week so I wanted to update all of you with the good news.

First and most importantly, I had another clean CAT scan. This means that there are no obvious malignancies growing in my lymphatic system. It's hard to describe in words how thankful I am for this result and how anxious I've been about the results. The left side of my neck has never felt the same since I had the excisional biopsy in February of 2010 and with all the lymph node malignancies and scarring in my lymph system, the lymph chain in the left side of my neck is anything but normal. From all this trauma, I occasionally get little twinges when I turn my neck, do anything with weights over my head, etc. So of course, anytime this happens I immediately worry that it's a sign that my lymph nodes are getting inflamed with new cancerous cell growth. I've been going into the doctor every 3 weeks for a dose of SGN-35 and every time they check my neck and assure me that things feel normal. So there really was no reason to think that bad things were happening in my neck, but I spent most of the last month or two worrying that I was going to be back where I was last December - feeling ok but actually getting sick again with more cancer.

So you want to talk about an anxious moment - the phone rings and the caller id says it's the hospital. And you know, without doubt, that the next 30 seconds are either going to bring really good or really bad news. Good news, life goes on normally. You can go to work, ride your bike, be with your family. And the odds go up that you might be around for a while. Bad news and another bomb detonates in your life. More chemo, another stem cell transplant, stop work, financial insecurity for your family, feel like shit for months, and the odds of death in the not too distant future ramp up. All that as a result of answering one phone call. So, a big breath and you answer the phone. The temptation is to not answer but that obviously doesn't change anything. And the news is good - a normal scan... And everything in your life is given back to you - your family, your joys, your plans for the future. In this post right after my diagnosis I mused that we're all one phone call away from Really Bad Things. But for me, last Thursday, I was one phone call away from some awesome news. For now, some combination of the chemotherapy I'm taking and my immune system are keeping everything normal. So a huge sigh of relief and life can now go on with some semblance of normalcy. The scariest 10 seconds of the last 3 months resolved into the happiest phone call in the last 3 months. Just like that, everything opens up. Such an intense range of emotions it's difficult to describe. If you've had cancer or been a support person for someone with cancer this all is probably really familiar to you. If you haven't had cancer in your life, be thankful that you don't have this experience - it's not something I would wish on anyone. I've read that some people get to the point where they feel thankful for their cancer or wouldn't change having it because the experience has become part of who they are. Maybe they're more emotionally advanced than I am or maybe it's just a coping mechanism or maybe I'll understand that some day. But for now, I still feel like I Don't Want This Fucking Thing In My Life. But it is and I'll have to deal with these phone calls for the new few years. So one down, more to go!

That's the summary of the intense stuff. A brief update on other things that have been going on for the last couple of months:
  • My health in general has been pretty good. In late August I had some bacterial or viral visitors that took up residence in my lungs and were giving me some fevers. A combination of rest, anti-virals and antibiotics seems to have cleared that up. A good event coming out of that incident was that I had another pulmonary function test in early September and it showed that my lung function is very good - better in fact than last January before I had the stem cell transplant.
  • The chemotherapy continues to lower my hematocrit which in turn impacts my ability to work out hard. I'm riding and really enjoying being on both my road and mountain bike rides but the social structure of my rides have changed. There are a set of rides and people I can't ride with anymore because I'm not fit enough. Everyone suspects that after I complete this round of chemotherapy my hematocrit will improve but no one's declaring that it will come back to where it was pre-illness. That's pretty sobering but it's probably a 2nd, 3rd or 4th order effect, where the big 1st order effect is that I'm not dying from lymphoma.
  • Susan and I are starting to get more excited about doing more cancer survivor related community service. We're in the midst of planning the year for our Livestrong cycling team and we're both looking forward to getting more involved with helping cancer survivors cope with the issues they face as they navigate through the illness and their recovery from it. As you can tell from the amount I talk about riding my bike, it's been a great source of joy for me during this journey and I really think it's helped me manage the illness better from a medical perspective. I'm hopeful that we can share this message with other cancer patients and help them use exercise as a way of improving their quality of life and their disease outcome.
  • My hair has grown back. A little less white hair and a bit finer than it used to be but basically my hair. The best part of having hair is that it's evidence that I'm not on any crazy chemotherapy so I love seeing my hair every morning in the mirror!
  • I've completed 8 cycles of SGN-35 (usually a dose every 3 weeks) and I've decided to do another 8 doses. That will mean I'll be getting chemotherapy until next May. Which sucks. But I think it gives me the best chance of being disease free for the long term so I'm ready to do the work. It's not a horrible drug in terms of side effects but I do feel it. Some lethargy, various levels of weirdness the first few hours after I get the dose but no big side effects. Since it's a clinical trial they don't have any long term data yet on how this affects survival rates but everyone on my care team is of the belief that as long as I don't get any bad side effects that More is Better. It probably also means that I stand a good change of being protected from any cancer growth in the next 24 weeks so I get 6 months of chemo air cover before I need to face the world without the protection of chemotherapy keeping my immune system intact.
That's it for now. I hope all of you have a nice holiday season. I'll try to blog a bit more frequently than every 3 months so check back now and again and look for new updates.