Sunday, February 27, 2011

one year survivor. thoughts and reflections

The 16th of February was my one year survivor anniversary.  I was waiting to see how the PET scan turned out before I blogged about this. But now that we have that in our rear view mirror, I wanted to write a bit about getting to the one year mark. So here are some insights and feelings:
  • First and foremost, I'm actually healthier than I was a year ago. Last year at this time I had a bunch of nodes in my neck and chest that had malignant cells growing in them. As of now, I have no nodes that are obviously malignant, given the diagnostic technologies available. Statistically, I'd have to say that  I probably still have bad cells in my body. But way less than last year at this time. That comparison makes the whole year seem worthwhile. I'm fighting hard to get my body to a place where I'm healthy and will be around for a long time. The fact that I'm heading in a positive direction makes all the work over the last year seem worthwhile.
  • It's been the scariest year of my life. I guess that's pretty obvious but still worth noting. The other thing about being scared - it sucks. And another thing - it's a lot of work and at some point, kind of boring and unproductive. I still have periods where I worry about dying and feel guilty about maybe not being here for Susan and the kids. But I mostly don't feel scared - the emotional energy of staying scared is just too much work and really doesn't get you anywhere. So maybe I'm just an emotionally lazy person and that helps me process things without going to pieces. I don't know.
  • Chemo can be hard on your body. Here's the list of stuff that's gone wrong this year;
    • Bleomycin toxicity in July. Put me in the hospital for 4 days. Maybe some long term problems but in the short term, pulmonary function has returned to normal. At one point I had trouble climbing two flights of stairs and for a period of 2-3 weeks I had trouble talking. Talking apparently requires a non-trivial amount of pulmonary function. And try waking up in the middle of night because you can't breathe well enough to stay asleep. Breathing is a really, really nice thing to do and to do effortlessly. That little session in July really gave me a bunch of compassion for anyone with bad asthma or any lung disease. Not something I would wish on anyone.
    • Fractured T7 vertebrae.  Happened in early September. Probably from the prednisone I took to help my lungs recover that weakened my bones and some yard work I was doing lifting heavy bags over my head. Took a few months to heal and I still have some mild pain in my back if I bend over without loosening up my back. But functionally my back is in pretty good shape and I don't have any significant pain.
    • Drugs that change your personality are scary. When I was on high doses of prednisone I was definitely a bit postal. Susan did a great job of helping me manage it and she was pretty saintly about not letting my little outbursts rock her world too much. We have a friend who has been on prednisone for some health issues and we got some good coaching from him and his wife on how to manage the 'roid rage. But it's a weird and troubling thing to think that a little pill you take in the morning changes the way you feel and the way  you interact with other people. That was troubling and something I'm not anxious to repeat.
    • Blood clot under my collarbone near my left shoulder. This has been going on since August. I was on a blood thinner for a while in the fall but have stopped once I started the current round of chemo. This has prevented me from swimming since the motion of doing freestyle causes the vein under my collabone to get pinched and my left arm swells and my left hand turns a scary shade of purple. I'll probably have some more work done on this issue once I'm doing with all the chemo. There are some enzymes that can be injected directly to a site to dissolve a clot that I'd like to try since I would like to have a fully functional left arm at some point.
    • Reduced fitness. Most people look me on a day to day basis and are amazed at how much energy I have. But for those of my friends that see me running or biking it's really obvious how much function I've lost over the last year. I'd like to be able to work out hard and enjoy the benefits of being fitter. Again, this is on the list of things to accomplish after I'm done with chemo.
    • General chemo ickiness. I've said it before and I'll say it again. I hate being constipated. If you're not constipated, this seems like a whiny and trivial issue. But if you've gone around for a week with a feeling that there's a bowling bowl lodged in your GI tract you know that this is really an unpleasant feeling.
  • Ok, enough of the gruesome details on how my body has been beaten up over the last year. To change pace a bit, here's a good thing. I have a lot of love in my life. It's kind of embarrassing, really. I've gotten so much support from friends and family over the last year. It's been absolutely great and a huge source of strength for me. But at some point it gets to be a bit overwhelming and it's hard not to feel unworthy of all the love and support. One day last month I was in the cancer center and a 20-something guy was in the waiting room. Recently moved into town, there for the first day of chemo and he was alone. Not one friend or family in town to come sit with him as he started a seven hour chemo session, the first day of a 2 year treatment plan he was on. I felt really bad for him. Chatted him up a bit and tried to give him support but it just struck home to me how lucky I am to have all of you in my life. So thanks again for all the positive energy and support. It has been the biggest single thing that's kept me (somewhat) sane and functional this year.
  • Having cancer and getting treated is a slow process. I've never had an illness that moves so slowly and that takes so long to treat. A whole year of stuff and we're not done yet. And of course, during that year, your life goes on. You still go to work, shop, clean the house, exercise, pay bills, do  home improvements, whatever. I'll be in the middle of some mundane activity and be reminded of the fact that I've got some cells in me that could kill me and that I'm fighting them. But with every other disease I've had, you get sick, get treated or rest on your own, get better, get on with life. I had the mumps when I was in the sixth grade and I was home for a week. I think that was the longest I'd been sick prior to last February. So the timing on the whole thing is pretty weird and emotionally kind of draining. It's kind of a slow, long grind that I wish we would just be done with. But apparently not for a while yet.
  • Spirituality. Lots of people that go through cancer search out some sort of spiritual comfort, usually through some sort of organized religion. I haven't felt that need. I think my two biggest source of spiritual comfort have been family and being active outdoors. Playing ping-pong with Kyle, chatting with Caitlyn on the phone, waking up in the middle of the night and feeling Susan lying next to me, skyping with my brother in England. Those are the important things. And moving around in the world, on my bike, running, walking. Last week we did a night mountain bike ride. Working to climb a hill, working to keep up with people on the flats, flowing down the hills with the headlights and taillights of your friends around you. All of these are my spiritual moments. I guess everyone gets their strength and centering from different places. It's probably one of the most personal things you do and for me, it hasn't happened in some building called a church, but rather in the little moments you spend with people you care about.
  • Things that seem important at work aren't life threatening. Our business has had some ups and downs the past year and that's been hard on everyone. But our work doesn't directly have life or death consequences. So with some immediate life and death consequences to consider, I've gained a perspective on work. Yup, it's really important that we do things at work that allow us to take home paychecks that provide for our families. And it would be a big bonus if being at work was fun or at least tolerable. But when I see people in the business world get all dialed up about some topic, it really doesn't phase me much. In the grand scheme of things, most people can find another job if they lose the current one they have and  things will work out. That perspective has probably allowed me to keep a more even keel than I might have had prior to having this illness. An interesting side effect of the journey, I guess.
  • I really like living. Another trite, obvious statement. But maybe not so obvious given that there are suicides every day. If there's one thing that this illness has pointed out to me, it's that I really enjoy being here. Yeah, like everybody I have parts of my life that are irritating, boring, frustrating, etc. But when you think about your mortality it really, really makes you want to be here for a long time. At least, that's been my reaction. I hope that in the end, this will be my biggest weapon in this fight I'm in. I have so many things to do, to learn, to experience in this existence. I'm not even close to being done with everything and I hope that strength of will can overcome any crazy metabolic shit that's going on inside of me.
So that's the quick summary of what I was feeling as my one year anniversary came and went. Nothing earth shaking I guess, but meaningful for me.

Well, off to bed to get read for a day of diagnostics tomorrow. I hope you have a good week and I'll post some more after we get our training session on Tuesday night on doing a stem cell transplant procedure as an out patient.

Passed the lumps and bumps test - that's a big milestone

Last week I had my sixth (!) PET scan of the last year. This was a big one - if the tumor wasn't responsive to the ICE protocol I was on, I wouldn't be able to do the BEAM protocol and stem cell transplant we have planned for late March. So I was super nervous about the test. Each week for the last six weeks the tumor in my neck has shrunk so I was pretty confident that things were going in the good direction. But boy - getting that DVD from the PET scan technician, putting it into my laptop and looking at the scan. Man, that's a pretty nervous 30 seconds or so. My stomach tightens up, I can feel my heart beating. All the typical stress reactions.

And - drumroll - the scan looked great! No obvious signs of increased metabolic activity in my neck or anywhere else in my lymphatic system. Here's the picture:
My layman's interpretation was confirmed by the radiologist - nodes greatly reduced in size, only a tiny bit of increased metabolic activity, which isn't visible in this view. So this was really good news - this is basically my admission ticket to the chemo next month that will hopefully completely stamp out these bad boy cells and get me set for many a year of healthy living!

what do you see when you look at an old person?

When I used to look at old people that were white haired, wrinkled, slow of gait, I always thought - man, that sucks. Getting old must be really hard. Having your face change, hair change, losing strength, flexibility, mental acuity - like most young people I was not looking forward to any of that.

But now I've got a different perspective. Now I think - wow - they made it. They got to live a long life, have lots of experiences, got to see their kids grow up and get out into the world, hopefully gain some wisdom. They've done it. And man, I'm envious. I WANT that - to have a long life, see lots of changes in the world. So I used to look at old people and feel kind of sad that they were trapped in that kind of body. Now I'm envious and hope I get to be old and have wrinkled skin, be a bit stooped over, ask people to speak up, need 3 pairs of glasses to get through the day, pee 3 times a night - whatever.

So for those of you that are worried about getting old. I think it's a good thing. Let's all do it. Sure beats the alternative...

re-staging (again)

Well, tomorrow I get re-staged. Again. Echo cardiogram, pulmonary function test, CT of my sinuses (I have no idead why they're doing this) and bone marrow biopsy (aka ass-drilling). All this work will be done with my new chemo group that focuses solely on blood cancers. For them to treat me, they want to know what they're dealing with in terms of medical condition. The whole thing strikes me as kind of unnecessary as I had this restaging in December and with the chemo I've gotten and the positive response, it's hard to image that anything has changed in a negative way. But they have to do this to practice good medicine so I'll just grin and bear it. I asked them to get out of the bone marrow biopsy - it's not terribly painful but having someone drill into your ass (well actually, a bone in your lower back) isn't much fun. But I failed in my efforts to dodge this procedure so away we go!

Tuesday this week we go in for a training session on how to keep our house clean so that I can stay at home during the high dose chemo and not get an infection. We've already read a big manual so I think we're pretty much set on what to expect but we do have some questions.

Physically, I'm feeling quite good. My RBCs are still kind of low so I do run out of gas if I push very hard on the bike or run. But every day I do feel a bit better. I'm sleeping well,  eating well, getting good exericse in and in general, just trying to get as healthy as I can before I start the next big stage of chemo on the 21st of March. This period has been kind of nice - it's been a month since my last chemo, my last PET scan showed that the tumors have pretty much gone away and all I've got to do is hang out and build up energy and endurance for the next big push.

One other nice plus was that I went to yoga this week. I've been feeling very tight in general since I finished the chemo in August but I've been worried that yoga would either be just really uncomfortable or, after this last round of chemo, not even doable. But the yoga felt really, really good. I think I will do more yoga in the next few weeks - it feels like that will be a nice addition to my routine that will help my body function better as I recover from the last 2 rounds of chemo.

Sunday, February 20, 2011

Livin' on a Prayer (by Susan)

It has been a while since I've added to this blog.  A lot has happened since my last post, as George has described in great detail.  After our Fabulous Fall, we were very disappointed to learn that the cancer had come back in two tumors in George's neck.  So, now we are on round 2 of treatment.   It was really hard to have to go back to the infusion center after we thought we'd never see it again.  But, the good news is that it is treatable and so we have every hope of a good outcome.  George remains incredibly strong and positive, which is really the best prognosis of all.    He just finished up his second round of chemo with flying colors, and we will wait until March for the stem cell transplant that will get rid of the cells that are creating the cancer cells.   And now we are, as Bon Jovi sings, "Livin' on a Prayer".

On February 16th is was one year since George's original diagnosis - so he is officially a one year survivor.  I remember last year on Valentine's Day it was bittersweet, because George didn't tell me about the lump in his neck, which he suspected was cancer, until we were done celebrating, and then, boom, two days later the whole ball started rolling.  It took me a while for me to believe what he already knew in his heart.   I have been writing poetry my whole life, and every year for Valentine's Day I write George a poem.  I though I'd share the Valentine's poem I wrote this year because it's the best way I know how to express what I'm feeling.

If Not Love

If not love then what
can break the long bands of despair
that bind our hearts?

If not song then what
can still the howls of coyotes
under full moon beside the highway?

If not laughter then what
can lift our hearts above the pain
so that we float, as light as thistles?

Reach out to me -
with hand to wrist and wrist to hand
we will hold tight
and not let go
until we cross this canyon.

And so we are holding tight, sharing love, song, and laughter to get us through this.  Many thanks to all of our dear friends and family for your support, your prayers, and your love.

Wednesday, February 2, 2011

ICE chemo is done, PICC line is out

Just a quick note today. Finished my second (and final) round of ICE today. Not too bad a day. Feeling a bit off from three days of chemo in a row but nothing too bad. The good part of the day is that I had my PICC line removed since I'll be getting a port for the high dose chemo I'm getting towards the end of March. The fun thing is I got to take the PICC line home with me. And of course, I wanted to share that with you:

Yup, that's an 18" plastic snake that ran from my right tricep up into my chest and down into the superior vena cava, which is right above my heart. Hot dog! Now I have a real Borg accessory I can add that to my list of gear. Gross? Cool? A bit of both? You be the judge :)

In any event, I'll be appliance free for about 5 weeks which is really nice. Not having to wrap up my arm up every time I shower and being able to stand under the water and not have to keep my right arm elevated is certainly a nice little treat I will enjoy over the next month or so!