Sunday, February 19, 2012

A great Valentine's Day

Last Tuesday was a pretty special Valentine's Day for me. The first big good news was that I got my CT results and everything looked normal. It was 2 Valentine Days ago when I had some suspicious bumps in my neck. I didn't tell Susan about them because I didn't want to spoil the day. But inside I was worried that there might be some trouble brewing in my neck. A couple of days later I went to the doctor and started down this fun trail called living with cancer. So to be demonstrably more healthy in 2012 than 2010 was certainly a great part of the day.

The other really awesome part of the day was getting some original art as a present from Susan. Every once in a while - usually to commemorate some milestone in our lives - Susan will write some original prose or poetry. I can do nothing like that and to me it's always an amazing gift when she creates one of these pieces. Here is the gift I received this Valentine's Day. Read this and you can see what a lucky guy I am to have such love in my life and have it expressed so beautifully.

The Perfect Man

I tried to make the perfect man
of clay and hair and cloth -
I pulled his limbs
long and strong, 
smoothed his head 
into a faultless shape to lock out all unhappiness.

I lit him with a match.
His eyes kindled,
And he listened, really listened.
He always got his proper nouns right
He had no bumps and bruises,
Didn't need to figure anything out
or fight because
he had everything he needed.

But he had a problem - 
He couldn't say anything that I hadn't taught him,
He didn't know anything that I didn't know.
His heart had not been cracked
By terrifying fate - 
he had no grace or courage,
having endured no hardships.

He wasn't you.

I shelved my statue
and forgot about him,
to seize our love, in all its craziness.
I exploded with
wild happiness, grief,
broken skin
unbridled laughter
unexpected white truffles
the cat's paws in first snow
the scent of an unimagined shore.

to George with love from Susan
Valentine's Day, 2012

Thursday, February 16, 2012

2 year survivor!

Well, I'm two years old today. IOW, I'm a two year cancer survivor today. Looking back at my early posts brings home the fact that it's been a hell of a ride. I like the concept of being two years old because in many ways, that's where I feel like I am with all this cancer stuff. Like most 2 year olds, I'm  pretty well behaved. But I get cranky at times or suddenly get exhausted and want a good nap. Sometimes I just throw a total shit fit (see my previous post about waiting to get my CT results).

I read stories about cancer survivors and they sound like they've received some great philosophical insight, have been given some great gift that have changed their lives for the better. Well, I wish I had their kind of cancer. And at some level, I think that anyone that says that is totally full of shit and is putting on some lame ass marketing program so the rest of the world can see how cool they've become. I don't believe it, to be honest with you. For me, the whole experience has been one I would never, ever wish on another person and I'd be extremely happy to have never had. Oh, sure, I've learned some things about the world that maybe I didn't really understand before. Here's the list of things I've learned:

  • Love is important. Without it, life is pretty shitty. With it, life is pretty awesome.
  • Family is important. Probably a repeat of the previous item but worth its own bullet point. As rough as things have been over the last two years, without family it would have been way worse.
  • I'm tough. Stubborn, courageous, tenacious as well. And oh yeah. I've been plenty scared, angry, worried, anxious, depressed and beaten down over the last two years.
  • I'm sad that my body has been damaged by this process. I've always liked my body and it's enabled me to do a bunch of fun things in the world. Here is the list of things that have gone wrong with my plumbing:
    • blood clot in my left arm, probably from the power port I had inserted into my left pectoral area in the spring of 2010. But perhaps from all the blood draws I had in my left arm in 2010. I can't swim more than about 200 yards of freestyle without my left hand turning purple from lack of blood return flow in my left arm.
    • Fractured T7 vertebrae in my back from low bone density caused by prednisone.
    • Lung damage from bleomycin toxicity
    • Peripheral neuropathy in my toes
    • Various skin sores, rashes
    • Scar tissue in my left neck area from the cancer in my lymph nodes
    • Reduce aerobic capacity caused by the anemia which in turn is being caused by the SGN-35 chemo I'm getting.
    • Have lost my taste for most fish, can't eat red meat, don't like cheese any more, beer and alcohol are less fun
  • I'm either a very spiritually advanced person or a complete rookie. I've though a lot about dying and what's next. I believe there is something next but I don't have a strong idea of what it's like. I'm scared that what's next might mean being separated from my family forever. That would suck. But the whole thought exercise of dying hasn't driven me towards any need for more organized religion or some great epiphany about how I should live my life. Maybe those insights are still to come.
  • Life is good. Like, really good. And precious, Oh, so precious.
  • I am not ready to die. Not by a long shot. Maybe when I'm 85 and my body is really broken down I'll be ready for the next thing. But not now.
  • I can understand how people give up on living. I think if your body is f__ked up enough, for long enough, and you hurt for long enough, I can see how you'd be ready to let go of this existence and move on to the next thing, whatever that might be. Especially if people that you really love (aka your spouse) has already moved on. My mom lived for 13 years after my dad died and she thought about him every day and missed him every day. I get that. At some point, I think my mom was happy to die because she really believed that she would get to be back with my dad. I hope that's true and that they are in some existence right now, surf fishing together. Minus the part where my mom hooks my dad in the nose with a big ass lure because of an errant cast. True story. Or perhaps she's busy hooking a seagull with an errant cast. Another true story. And my dad gets to capture the seagull, wrap it in a jacket (hard to do, but important when the seagull is struggling) and uses his needle nose pliers to cut the barb off the hook. This is a reminder that you should always, always have your multi-tool with you. In this life or any other existence you might be in.
  • Having people die that you know is bad. Really bad. The closer they are to you, the worse it is. But really, it doesn't take much for you to feel close enough to someone that when they die, it feels like someone has punched you in your private parts, puked down your shirt and thrown broken glass into your eyes. Yeah, it's that bad. I've known a couple of people with cancer that have died. And perhaps a 3rd one that I've lost track of. Which begs the question, what is the social etiquette of trying to track someone down just so you can find out if they're dead (yet)? I haven't figured that one out yet so I haven't tried to figure out what's going on with Reuben. But I think about him a lot and hope he's OK and wonder if I'm a chicken shit because I'm not tracking him down or just being respectful of his family's privacy. More the former than the latter, I think.
  • I like to exercise. I need to exercise. When I can't exercise, life is harder. And exercise can just mean walking down the hallway a few times. Movement is fundamental to how I live. 
  • Compassion. Feel like I've maybe got some more of it for people that have cancer. Still need to work on this. Feel less compassionate towards people that worry about problems that don't seem very important to me.

So have I been changed by the process? Absolutely. For the better? Physically, definitely not. Emotionally? Probably a toss up. Maybe I've got some more wisdom but I've also had a lot more sadness and loss.

But the big, big lesson that I'm enjoying today is that I'm still here. I love my family, I have a great circle of friends, my health seems to be improving and I can visualize a reality in which I'm here in this existence for many years. I still have many things to do in this world and I'm not anywhere near ready to go on. So today I'm happy. Happy to be here, happy to be more or less healthy, happy to be typing this note to you, whenever you read it.

Sometimes I feel like closing with some advice, or some pithy comment. Not tonight. I'll just end here and tell you that I've got another blog coming tomorrow that is a great example of some of the great, wonderful things I have in my life. Bonsoir!

Wednesday, February 15, 2012

Another clean CT scan. Joy, happiness, relief

Had another cat scan last Thursday. As always, in the days leading up to the scan I become more and more anxious. Because of the type of Hodgkins I had (nodular sclerosing) it's pretty common to have scar tissue in the nodes affected by the cancer and the follow on chemotherapy. I also had an excisional biopsy in that area to diagnose the disease (look at this for the result of that little adventure) which probably caused some scaring. Because of all of this, the left side of my neck still feels a little funky compared to the right side of my neck. As the time for the next CT scan draws near, I start checking my  neck more and more frequently and any little twinges quickly lead me down a path of fear, uncertainty, anger, sadness and general emotional chaos that I have some more malignant cells growing in the war zone that is my left neck. I do lots of visualizations that my cells are happy, healthy and normal. But by the time of the scan, I'm basically a basket case, thinking through how great it will be to get good news and how I will deal with bad news. Good news = happiness, joy, relief, another 3 months of normal living. Bad news = a PET scan (to confirm hypermetabolic activity indicating tumor growth), followed probably by another stem cell transplant. This probably means another leave of absence from work and 3 months of tests, massive chemotherapy, stem cell transplant (basically a transfusion of your own blood), more transfusions for platelets and red blood, nausea, constipation, fatigue, hair loss, possible pulmonary complications and another step down the road of not living so long. In a nutshell, this is stuff that You Don't Want To Do.

As I lay down on the table prepping for the CT scan, I send one final message out to the universe. If you've ever heard of foxhole conversions, this is what happens to me. In the space of about 30 seconds I think about joining every possible religion on the planet and broadcast a heartfelt message to any deities (either at the cellular level, the spiritual level, the n-brane cosmic level, wherever and whenever I can get anyone to listen) that I would really, really, REALLY like to have a clean scan. The actual scan itself is pretty uneventful - it takes about 10 minutes and unlike an MRI machine, the CT machine uses a torus that's about 2 1/2 feet wide inside, so there's no feeling of claustrophobia. After a few minutes of lying there, you're all done.

And now the waiting game starts. The radiologist will read and interpret the scan in about 2 hours. So having had the scan at 11:00 in the morning, it's reasonable to think that by late in the afternoon both the radiologist and the oncologist will have done their thing and I'll get some news. Now the one thing I've learned in these situations is that you don't want to be popular and important. Similar to being popular and important in the ER, being popular and important to your oncologist usually means that Bad Shit Is Happening (To You). So as Thursday afternoon and evening goes by, I try to convince myself that not getting a call probably means good news. And then Friday morning goes by. And then Friday afternoon. Part of me just wants to call the goddamn fucking oncologist and say "WTF!!!!" Don't you know that I am a nervous wreck and that this waiting is turning me inside out. Have you no sense of compassion? Tell me WTF is going on. Or I will drive by your house and smash in all the windows of every piece of your property I can lay my hands on." Well, I didn't really think that but you get the idea. What I did think was that there are people in the same program I'm in that are way more messed up than I am and that probably (PROBABLY) everything is fine and I should just chill out. So I wait all weekend and do a pretty good job of not getting too spun up about the uncertainty. So Monday morning I finally crack and send a little note to my oncologist saying "hey, just btw, how did my scan turn out?" Cuz, you know, I am an uber-cool and with-it guy and I am totally not rocked by the fact that these test results will have a major impact on you, know, like THE REST OF MY LIFE. So you know, if you could just FUCKING LET ME KNOW WHAT THE FUCK THE TEST RESULTS ARE, that would be really, really nice. And 10 minutes later - bing! I see e-mail from my oncologist. So, with my junk pulled up into my throat, I click the link to read the message. And she says - "I'm not working today, I'll look at your results tomorrow." And I'm immediately relieved that at least it's not bad news. And then I think, wtf, wtf, WTF, WTF!!! Now I have to wait until tomorrow morning? Crap, shit, fuck, damnit to hell. I just want to know. But I sort of don't want to know. Because knowing could be really good. Or it could be really bad. So not knowing is sort of better than knowing because you can sort of trick yourself into feeling ok. But that trick doesn't really last long and then you're just back to being anxious and nervous.

So - sigh. Another night of waiting. I meditate before going to sleep and work to get centered and convince myself that whatever happens, it's really not the end of the world. There are lots of treatments still available to me and because I can't feel any giant lymph nodes, if there is some malignancy there, it's not super advanced. Surprisingly, I sleep pretty well  Monday night. Tuesday I am on campus doing some job recruiting and am just waiting for the damn phone to ring so I can get this chain off my neck. And finally, about 1:30 I get the call. And in 15 seconds I know that everything is good. No signs of abnormal structural changes, everything looks fine. And the world is suddenly a beautiful, happy, awesome place to be. Relief, joy, giddy happiness, exultation. And also emotional exhaustion. Worrying is really hard work! It feels like I just ran a marathon. And of course, you get off the phone and the world continues on like nothing has happened. Business meetings continue, people still type away at their keyboards and chat on the phone. Part of me wants to run down the halls at work screaming that I've just been given another 3 months of healthy living. But another part of me just wants to be a normal person at work. Of course, I can sit in a meeting, read my e-mail, do some work in my office and then drive home to dinner. I am a normal, healthy person. I can do normal stuff. I am not about to go through six months of invasive medical procedures that may or may not save my life. Nope, not me. I'm just an average guy with no life threatening illness sitting in the wings waiting to rip everything I hold dear away from me and plunge me into an abyss of - what? Nope, don't have to worry about that because That Is Not ME. Or at least not me for another 3 months.

So as crazy as these last few paragraphs sound, I believe that I'm relatively calm compared to some people in this situation. So know that if someone is waiting for these kinds of test results, they are undoubtedly a giant mess of emotional angst inside. So give them a hug, get them a beer or maybe give them a little break in life because trust me; if you've never gone through this, you have no idea how scary it is or how brave they are being just by putting one foot in front of the other and trying to live a normal life with this giant safe poised above their head, ready to either disappear or come crashing down on their head.

So, I'm doing well! Another couple of posts to catch up on some other thoughts but I'll stop this one here. Thx for reading and sorry for the foul mouthed potty words.