Thursday, September 27, 2012

Thoughts....


I just wanted to sit down and… I guess vent a little. The dust of the proverbial storm of the last five months of my life hasn't even fully settled yet, but still, there are some things that I think are worth talking about.

The diagnosis:
I can’t tell you how many people have told me that my internist should have caught the lump in my leg when it was smaller. Usually these are people who don’t know me that well, and who really don’t know my doctor at all. The bottom line is that we did catch it, and we caught it in time. It took both of us, me to notice the lump, and him to diagnose it. In the end, finding it sooner would have helped, but not really changed anything.

The people:
Yeah, half of this bloody mess is more about everyone else than me. I’m not saying that resentfully, just as an observation. And on that thought, here are some observations for you.

1.       Less than half an hour after my first FB post stating that I had cancer, my FB adds and (one of) my e-mail address were flooded with advertisements for “miracle” cancer treatments, “real” cures, “alternative” therapies, and coupons for clinics in Mexico, Latin America and Europe. The torrent didn’t end until I put Ad Blocker back on my browser. The scary thing is that it took less than half an hour for close to 100 quacks to try and get their word in. I can’t help but think of what that type of influx of information would do to someone who hadn’t already had a long talk with his doctor.
2.       In less than a week, my other in-boxes were flooded with direct e-mails from actual people I know. To be fair, they were all well-intentioned, and all honestly worried about my well being. But none the less, I was provided with close to 50 websites talking about everything from Laetrile, to cancer-fighting foods, to links to local acupuncturists.
a.       Some of the information was provided with a “this worked for me, just take a look” attitude. This is wonderful, I am glad to learn from personal experiences, and had this done on any longer, I might well have looked up some of the herbalists or acupuncturists I have heard about to help me deal with the chemo.
b.      Some, however, came with explicit messages of “whatever you do, don’t trust your doctor”… and lots of links followed on short order. When a scientifically minded man is fighting for his life is not the time to question his core principles. Those people are no longer connected to my Facebook, my Google +, or my instant messages.
                                                               i.      In short, and in very much a modern sense, I don’t talk to them anymore.

3.       And then… we have the ones that you don’t want to be next to in a crisis. I had one mother of a friend whom I told “I was diagnosed with cancer, and I start treatments net week”. However, what she heard was “I have inoperable cancer”, and proceeded to flood her (adult) child with “helpful” information to pass along to me. Took about a week to decide how to handle that little mess.
4.       And then… we have everyone else.
a.       The supervisor who looked at me and said: “you do what you have to, I’ll take care of the scheduling”
b.      The coworker who laughed and said “and you’ll kick it’s ass like every other challenge you've gotten”.
c.       The child (and daughter of a good friend) who looked at me when I told her and said “what’s cancer?”
d.      I pinged one co-worker with the following conversation

Me: I have some news for you, since it will became obvious in the next few weeks.
Him: What, you’re pregnant? Ha ha…
Me: Actually… I was diagnosed with cancer last week. I’ll be starting chemo soon.

[looooong pause]

Him: Now I feel like a total douche for saying that.
Me: he he… why do you thing I phrased it the way I did? ;-)

[another looooong pause]

Him: Well played.

e.      I can’t tell you how many people I have had to explain chemotherapy, cancer, and even some basic anatomy to. It’s not that I mind, but when I realize how few people don’t understand the basics of biology (“mitosis” was a completely alien term to a lot of people), I really had to wonder.
f.        I had one random woman at church walk up to me in the beginning and say “you’ll be fine, you know that?” I asked how she was so sure, and she pointed to herself and said “Stage four, four times, and I’m still here.”
g.       I’ve had eight people that I can name tell me that I have been “an inspiration”, “heroic”, “stoic”, and/or “aw inspiring” through this whole process. I’m still not sure how to take all that. I know it’s all said with good intents, but for me, the times they were talking about are some of the roughest in my life.

5.       As I have learned in the past, “modern medicine” is  a mixed bag, with no single  profession or skill-set completely good or bad.
a.       All of my doctors were good this time around, sure, some of them were a little rough around the edges, but I don’t’ ask for diplomats, just professionals.
                                                               i.      My general practitioner, who has now had the pleasure of finding two major medical problems with me, and more or less rushing me out the door to get the help I need. The man is good at what he does, and right now I am looking forward to seeing him and having him say “there’s nothing wrong with him.
                                                             ii.      My surgeon: who biopsied the largest tumor and who called me the following Friday and broke the news to me. She’s been steadfast in her support, and nearly predatory in her advocacy on my behalf.
                                                            iii.      To my two oncologists (changed horse mid-race), you’re work is usually thankless, and I don’t imagine you are ever far from news of someone dying. Still, you were there every time, doing the job, hoping for the best, and honestly telling me “this is just going to suck, I’m sorry”… Thanks.
                                                           iv.      To the Ultrasound tech who did theorigionall ultrasound, assisted in the ultrasound-guided needle biopsy, and who did my echocardiogram… Your calm demeanor, conversation, and charisma were a calm in the middle of a storm that I needed. Thanks.
                                                             v.      Oncological nurses who managed my treatment in two cities over four months. They advocated for me, stood up for me, and went to bat for me when others did not take a moment to put a human face on a decision.
                                                           vi.      The fifty or so strangers who applauded the day I randomly announced to the waiting room “I’d cured.”
b.      Outside of the that…
                                                               i.      Everyone at Highland Park United Methodist Church banned together and prayed for me,  offering support and best wishes, and as far as I’m concerned, it all worked.
                                                             ii.      My friends in the SCA mustered behind me from the word go, offering encouragement, help, best wishes and worried looks all where appropriate. The SCA has been a second family for many years now, and this time that family banned together.

All told, I consider myself lucky. Know too many people who have beat cancer, and too many more who didn’t. As much as some people might want to say I beat it because of this attitude or that personality trait, the truth of the mater is what by the end, I was holding on by my fingertips, wondering how much longer I could keep it all together.

I think the best ending for this was my son’s reaction when he got home from school and I told him the news. He jumped up in the air, shouted “Yeay!” and then stopped and added “Can I play on the PlayStation now?”