How I got here

I have officially had cancer for almost two weeks and right now my biggest problem is keeping up with messages from friends.  What a great problem.  But, I realized early on I should come up with some sort of central location to update my progress, look for chemo dates, and basically steer my cancer talk.  I don’t want to race Farmville to the Hide button on Facebook.  This post in particular is for those just finding out-to those who already know, my feelings will not be hurt if you bypass the next 1500 words.

So to those who haven’t heard my story yet, the magic really started happening May 23rd.  I was sitting on my couch not moving when I got the feeling of a muscle ripping in the lower left side of my abdomen.  It felt a lot like the same pain I’d felt a month earlier that I wrote off to some sort of ladyproblem, and went away after a few days.  This time however I woke up a few days later with a painfully bloated stomach and made an appointment that day with my GP, who diagnosed me with Diverticulitis.  Two rounds of antibiotics helped a little, but eventually I would have to see a gastroenterologist.  After an extensive wait due to new patientness, I did.  I asked if he thought I might have colon cancer, and he quickly dismissed it.  ”Nah, you’re too young.  I’d be really surprised if it was”.  He ordered a routine CT scan for my “diverticulitis” and scheduled  a colonoscopy for the end of summer.

So here’s where it gets meaty.  After my CT scan, the technician told me I could leave, but the phone quickly rang and she said the radiologist wanted me to wait.  Didn’t love the sound of that, but I waited, and after half an hour was told I could go.  Early the next morning I got a message from my gastro’s nurse saying my gastro was on vacation, but a different doctor wanted to go over the scan results with me, in person, and could see me early that afternoon.  Oh, and when I called back to have her paged overhead.  Shit.

I met with the new guy, Dr. A, and he told me the scan turned up a tumor in my colon.  He kept saying “I’m so sorry.  This is a lot to take in, are you okay?”  I wasn’t about to break down; I just kept thinking “Can I leave?  I have to go get chemo or something, I don’t know”.  That colonoscopy was moved up from the end of the summer to the end of that week.

COLONOSCOPIES REALLY AREN’T THAT BAD YOU GUYS.  It sure as hell beats the predicament I’m in right now.  The worst part was drinking the juice that makes you pee out your butt.  It tastes like flat, thick, salty Sprite.  But it’s not that bad coming out.  And the procedure is fine too; they put you to sleep.  The last thing I said to the doctors before passing out was “Enjoy my ass, boys!”  Afterwards they wheel you into a little room and you fart a lot.  If colon cancer runs in your family, grow a pair and get your butt scoped.  I’ll be your best friend.

Anyway, duh, during the colonoscopy Dr A located the tumor and biopsied it.  My sister and I spoke to him afterwards and I said I assumed it would take awhile to get another new patient appointment with a surgeon or oncologist, could I make one now while I wait for the pathology report?  He said no, just sit back and wait until Wednesday, then he’d be happy to help me pick out who to see next.  My sister, the cancer sherpa, had already asked around and had gotten a few names, one being this surgeon at Seattle Cancer Care Alliance her doctor referred to as “Batman!”  We asked Dr A if he knew Batman, and he said he didn’t know anyone at SCCA.

Well too bad, because I do!  This is the part of the story I love.  I researched some of the oncologists and surgeons whose names had come up, and decided I really wanted Batman, and this one particular oncologist at SCCA.  I thought Batman was probably within my reach but the oncologist probably had a bigger caseload and would be more of a long shot.  Bring in my friend, the assistant to the director at Fred Hutchinson Cancer Research Center, a partner of SCCA.  He knew the oncologist, wrote him Monday morning telling him about me and asked for advice.   Within less than an hour, the oncologist wrote back, copied Batman, and said let’s get her in Thursday or Friday.  Right after the path reports.  Every time I spoke to his assistants they’d remark how he never agrees to see patients without seeing their charts first.    I was starting to feel pressure to show up with spectacular cancer!

Wednesday’s appointment to get the path results were just a formality to me; things were going to start happening when I met with the oncologist as far as I was concerned.  I hadn’t been putting all my hope in a benign outcome, frankly I didn’t even care what type of colon cancer it was.  Dr A told me it was adinocarcinoma, the most common form and was probably shocked when I said “oh good”.  Hey, to me that meant no surprises or rare and unknown diseases.  He said “So we should probably talk about next steps, you’ll need to find an oncologist” I cut him off and said “Found one, I’m seeing him tomorrow at 10:15 AM”.  His expression changed, the I’m Sorrys stopped and he figured out I didn’t need any coddling.  I really liked that part.

Oncology!  SCCA!  Love, love love SCCA, and my oncologist.  He definitely needs a nickname equal to or greater than Batman’s.  I don’t think he ever told me he was sorry, which is good.  In my mind, there are a million reasons I can beat this and no good reasons why I can’t and the guy who is going to help me beat cancer should absolutely feel that way too.  Basically I just got a bad haircut and he’s going to help me figure out how to grow it out.  I told him my sister’s oncologist said her body responded really well to the chemo and could he please tap into that gene.  His eyes lit up and he said that was really good news.  We were going over what I should eat and what I should not eat, and when I asked what about sushi, he thought for a second and said “Sushi’s fine…  But not bluefin tuna, because it’s endangered”.  Best.  Oncologist.  Ever.  He never mentioned anything close to “this many months to live”, but outlined my treatment path, which is long.  He kept writing next steps, and the flowchart took up one line, then wrapped around to the next, until finally he wrote STOP. I exclaimed “thank you!!” and he said “Well, getting to the end is a big deal.  Not everyone makes it that far”.  Oh right.  That’s what we’re doing here.  Here’s an edited version of what I’m in for:

Chemo -> surgery -> another round of chemo -> another surgery -> radiation ->more  chemo -> light chemo  -> STOP

There may be a step or two I’m forgetting or not reading right, but that’s pretty much my social calendar for awhile.  After our appointment, I met his nurse, who is just a doll.  She’s one of those nurses who loves “flair”.  She gave me a huge tour of the center, walked me through my welcome guide, gave me giant hugs, and introduced me to my Coordinator.  So this is great; I have someone who schedules everything for me, and I just have to show up.    I may need reminders over the next several months, but right now I’m honestly somewhat excited to get going.

I have no idea how I got here.  Colon cancer in people under 35 is extremely rare, in fact my GP said they didn’t even discuss it when he was in med school; they were just told it didn’t happen.  Colon cancer doesn’t run in my family; my parents who are both in their late 60′s (sorry Dad) have both had clean colonoscopies within the last six months.  The dietary recommendations my oncologist gave me were nothing outside of what I was already doing for the most part.  Sometimes I get caught wondering what would have happened if I’d just gone to the ER that first time I got a pain in my side, or why other people who do meet the risk factors are healthy, but I quickly remember that even if I had the answers to all those questions, I would still have colon cancer right now.  I haven’t looked up any of the colon cancer statistics.  They’re based on older medicine, and they’re not my numbers.  I’m not preoccupied with the whys and the worrying; I’m laser rocket focused on getting better.

And hey, at least I don’t have Diverticulitis.