Last Oil Change! (…for a little while)

Tuesday marked the last chemo cycle of my first round.  I have a month off to go crazy and get healthy for surgery on November 5th, then I will most likely be down for the count for about a month recovering.  Then more chemo in December!  Hooray!  …right?

As usual, the day started with a blood draw, and the waiting room was PACKED.  The girl who drew my blood recommended I go to Hawaii to recover from my surgery next month.  I doubt I will, but doesn’t her recommendation count as medical advice?  Instead of meeting with Sam this time I met with the RN, Charlie, who is an absolute sweetheart.  After my blood counts were all the way at 16 point something last time, I have dipped to 1.8, or “right on the ropes” of another snow day.  It’s crazy to think I could drop so fast, but hey, another painful Neulasta shot will clear that right up.  Charlie and I talked for a long time; I felt bad for cutting into his lunch break but he had a lot of reassuring things to say about my upcoming surgery.  One of his recommendations was to get a lot of protein in, which I figured might be a challenge.  I eat meat when I go out, but when I cook for myself it’s a mostly vegetarian diet.  He checked my protein levels though and much to my surprise I’m in a good range.  He also poked around my belly to see how things were going.  This brought me some closure; lately I had been thinking about similar exams from my General Practitioner and the Gastroenterologist before I found out I had cancer.  If this tumor is fist sized, shouldn’t they have felt something that made them speed up the testing or something?  Charlie said he couldn’t feel the tumor at all, so I forgave the previous doctors.  Yes, the tumor MUST have shrank some due to the chemo, but I think it’s also one of those sneaky tumors that has been hiding from such exams this whole time.  Jerk.

Then it was up to Infusion.  The good news this time was that Judy was my nurse.  The bad news was, IT WAS NOT JUDY.  I was somehow assigned to a different nurse named Judy.  She was nice, and competent, and followed all of Judy’s orders from previous treatments, but it just wasn’t the same.  Good Judy came over eventually and said she was mad at the scheduler who screwed up.  She made sure I was taken care of and assured me we’d be reunited in December.  As she was leaving she told me she loved me.  I feel so lucky to be at SCCA.

 

I had the most festive chemo pole in the whole cancer ward.

 

As usual, my guests and I were up to no good, in a fun way.  At one point I was in the bathroom (I do that a lot on Infusion days) and could hear my friends laughing from my room.  The Nurse Bait was out of control this time; we had four kinds of cookies for everyone.  FANCY cookies.  My mom and sister have gone above and beyond with the baking this round.  I hope they know how much chemo I’m in store for here, they certainly aren’t pacing themselves.  And celebrity guests were right in line with a grand finale.  We learned that Kinko’s can make a really fabulous, sturdy David Hasselhoff for a very reasonable price, and we also got a lesson in British pop culture via a whole calendar of Cliff Richard.  Apparently he’s the UK’s answer to The Hoff, but while the Hoff will pose for calendar shots in the buff with real live Shar Pei puppies, Cliff poses with fake parrots.

I have to say, my chemo experience was never a horror story.  In the last two months I’ve thrown up a few times, but I’ve never spent a day hugging the toilet bowl like they love to portray in the movies.  I don’t really feel too bad on the three days I’m plugged in.  I do feel pretty lethargic, stupid, queasy and generally not awesome for the week following, but my doctors have been really good about prescribing things to help with that.  My purse is FULL of prescription bottles, it’s a borderline depressing sight.  There are a lot of things to like about my infusion days.  SCCA has created a wonderful environment for its patients; I have no idea where they find their employees, but everyone is always happy and helpful.  They have people wandering the waiting rooms with juice, water, and crackers, or offering hand massages.  People turn down the hand massages a lot, I haven’t figured out why, but I’m one of them.

Most importantly I am grateful to everyone who came and turned my treatments into a Party In The SCCA.  My tiny room was always full of friends who took time off work to come hang out.  There were a few times I thought I was going to be productive and write some overdue thank you notes, but never could because someone was always dropping in, so if I owe you a thank you note, let’s blame my supportive friends for my tardiness.  Really, I had long days in those rooms; at least 5 hours at a time, and over the course of this entire first round, I was only alone for 5 minutes.  I am overwhelmed by the amount of time you guys took out of your days, and humbled by the “where else would I be” attitudes you showed up with.  For those who didn’t make it this round, don’t worry, I’ve got a lot more cancer I’ll save for you.

Party In The SCCA

First Chemo!

My day started in my oncologist’s office, and this time I brought my parents.  Since the most soul shattering thing one can do is make their parents cry under any circumstance, I have been forthcoming with my situation, but I may have left out a few specifics along the way.  Kinda forgot to tell my doctor this, so they got the full punch to the gut, medical terms and all.  My dad also gave my oncologist a new term: “tougher’n a woodpecker’s lips”.

After we talked to the oncologist, we went up to Infusion on the 5th floor, where I was given a pager as though I was at the Cheesecake Factory. My parents waited for me to start buzzing, then we got a mini tour of the Infusion area.  I don’t know if past teachers of mine gave them a heads up or anything, but I got a corner room right next to the main nurses station.  I was also right next to the warm blanket station and bathroom, which came in super handy.  My cancer entourage which on this day consisted of my sister, Vicki, and Brandi all showed up at the same time, which meant it was time to kick my parents out.  I didn’t think they could handle the kind of partying we had in store.

Man, did these girls bring it.  My sister brought some serious Nurse Bait: Mexican Chocolate Chip Cookies.  I shot this offer down initially, but was told if you want to get on the nurses’ good sides, you bring chocolate.  It worked!  I think my nurse Amy was kind of sizing us up as we unpacked more than enough entertainment for the long infusion.  We had gossip magazines, teen rags sprayed with Justin Bieber, old Circus magazines for leather panted inspiration, and I think a Northwest Living or something  snuck its turtleneck-with-blazery self in as well.  And a major, I mean *major* celebrity guest joined us for the day:

We stuck Bret Michaels in the window facing the nurses station and waited for people to notice.  I’m sure our peeking around the curtain was totally inconspicuous.  So back to the chemo.  I am on a combination of different drugs, and I learned that they are not all mixed in one bag.  They are delivered at various points throughout the day, and each time they’re dropped off, two nurses have to verify with me who I am and when I was born.  Even Amy asked me my name several times.  She didn’t have amnesia, it was just procedure.

My first drug was Avastin, and it kind of needs its own guitar solo when you mention it it’s that cool.  My very unscientific definition of it is that tumors create a certain protein that signals my body to create more cells that the tumor then feeds off of.  Avastin blocks the protein the tumor gives off, cutting off the signal to make more cells, which eventually starves the tumor.  Sadly I only get this awesome drug this one time, but it sounds like everything else I’m on is a colon cancer bazooka anyway, so I’ll be okay.  After that was done, I got a bunch of little bags of everything else I couldn’t name, one at a time.  One of the drugs had to be given between two doses of electrolytes, which made me kind of queasy.  Amy to the rescue!  She gave me injections of anti nausea medication to counter it, but it was definitely those electrolytes that screwed me each time.  I now have a large arsenal of anti nausea pills at home, and I asked if I should bring them all in next time, but she shrugged and said “I’ve got them in injectable form, may as well get a quick fix and save your stash for later.”  I loved Amy.

One other nurse whose name escapes me was in to help a lot.  She reminded one of us of Liza Minelli and had a ton of insight on my various drugs.  She warned me one might cause relatively normal bleeding to turn into quite significant bleeding, like bloody noses, trouble shaving, bruising from just brushing against something.  I said “So what does that mean for the ladies during (gesture gesture)… Shark Week?”  My friends all just about died, but God love those nurses, they didn’t even blink and got totally excited about a challenge.  Liza left and came back to quickly report that nobody at the nurses station knew, so she had a message in to my oncologist’s nurse to ask around up there.  Oh yeah, I brought the trivia.

A sadness fell upon us later when discussing my future infusion days, which will now move to Tuesdays.  Amy only works Wednesdays and Thursdays, so we had to be brave and not get too attached.  She did say that the other nurses were already starting to fight over who would get me going forward.  I suggested some sort of Bachelor-y system where they could all vie for the honor of being my caregiver.  Sure enough, the girl with the coolest Nurse Dress came in shortly after to say hello.  I still liked Amy best though.  Or Liza.  As much as I would love to have Amy give me all my injections and be there to meet future celebrity guest cardboard cutouts, everyone at SCCA has been so fun I doubt I’ll get stuck with anyone who isn’t up for my shenanigans.

I got tired as the day went on and abandoned my guests for naps here and there.  Perhaps I was a bit ambitious with the full day date idea and drop ins will be the way to go for future infusions.  I totally partook in the Snack Station, they are down some delicious pasta salad, a string cheese or two, and a full on organic macaroni and cheese dinner.  That station is FULL of snacks and I just get to go for it!  I will try not to be such a mooch in the future and bring my own food, but that entire macaroni and cheese thing was quite thrilling.  Somehow I missed the point that I was hooked up to all kinds of fluids and was shocked at how often I ran to the bathroom, until the girls kindly pointed out to me what that machine I was dragging was doing.  The rest of the day is kind of foggy; I think I got out sometime around 9, and I know Vicki drove me home, but I don’t remember the ride at all or how I got into bed.  Yes, infusion day transportation other than in my own car will certainly be a must.

I think that covers the main excitement.  I’ll save my review of the To Go bag of chemo for another post, and welcome any suggestions for future celebrity cardboard puppet guests.  We will definitely resurrect Richard Simmons for a session, probably Oates, a little Tony Danza , Jackee from 227, maybe a little Bea Arthur.  We’re undecided as to whether Mel Gibson should show up so he can hurl insults at my tumor, might want to feel the nurses out a little more on that one.

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.