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.

Special Delivery

My Snow Day Week O’ Fun does not come without a few housekeeping items.  I have to take potassium pills for two days, and these things are about the size of a banana.  And my immunity is officially so nonexistent I have to take antibiotics just in case.  And finally, I have to give myself a Neupogen shot every day for five days to get my blood counts up.

What’s cute: These teeny tiny little bottles of Neupogen!   They are cuter than if Anne Geddes took pictures of those adorable mini ketchup and mustard room service bottles instead of babies.

What’s not cute: Waking up at 2 AM when the Neupogen kicks in.  YEOW.

My first shot was intense all around.  I guess for diabetics and other conditions shooting up is no big deal, but the first time I did it was pretty weird.  And empowering.  Wipe everything down with an alcohol pad.  Uncap the needles a certain way so they don’t stick you.  Wipe down the area I’m going to pinch and stick myself with another alcohol pad.  Try several times to get the right amount out of the bottle without air bubbles.  Push the cat off the sterile counter and remember to close the door next time.  Dispose of needles in really cute new box labeled BIOHAZARD.  Wipe everything down with another alcohol pad.  Wonder what everyone else is doing right now.

The wake up call is nasty.  Same pains as before, in my hips and lower back, and the first night I had no idea how to handle it.  Do I take a few aspirin and hope for the best?  Painkillers?  Is it too late to take a sleeping pill?  I never got back to sleep, not even that inevitable 45 minutes before the alarm clock goes off.  I went to work, but was rendered absolutely useless by 2, so I went home to sleep.  I only slept for 20 minutes and was cranky as hell for the rest of the night.  For shot #2 last night I drugged myself to the hilt.  According to a few message boards, Claritin seems to help the pain, no clue why.  So Claritin was joined by some Tylenol, a Lorazepam, 6,000 IU of Vitamin D, and a Percocet.  Is that how Jim Belushi went or do I need to do more coke?  I slept like a brick though, and was in full Snow Day mode today.

I also went to see my General Practitioner for my headaches.  I’ve had migraine problems for years, and with the chemo (or more likely, all the pills I’m taking for the side effects) headaches have become routine and have ruined otherwise great days.  Honestly though, my oncologist offered to prescribe whatever I needed for my headaches but I really just wanted to have a doctor appointment that wasn’t about cancer.  I told his nurse I was going through cancer treatment and she said “What kind?  Obviously not chemotherapy”.  YESSSS!  Cancer looks good on me apparently!  She really said “obviously”.

And a few days ago, two people I really like welcomed a new member of their family.  I have a soft spot for baby Liam because I got the invitation to his baby shower right as I was first getting diagnosed.  I was so mad at that invitation.  I had CANCER, and I have to go oooh and awww over little shirts and little pants, and weird contraptions I had no idea what to do with?  I kicked that meeting request around in my inbox begrudgingly for a few weeks, then realized that this is a HUGE thing for Liam’s parents.  Huge.  Things aren’t going to stop happening because I have cancer, and it’s totally dumb to expect the world to drop everything and mourn with me.  Big happy events are going to happen to people around me, and if I sit here pouting about my situation I’m going to miss out on a lot.  I think I accepted the invitation the day before the shower, but by then I had figured out my feelings, gotten over myself, and I had a very good time.  So, welcome Liam!  You may just be hours old, and I think you are a long way from forming coherent sentences, but you have already taught me something very important.

SNOW DAY!

I flunked my blood test.

My last cycle was a breeze side effect wise; I’ve got a prescription for just about everything now.  Emotionally it has been the toughest yet.  I’ve been wanting more than blind faith to know the chemo is working, I have been a little angrier, and again I made the mistake of internet research.  I can get pretty resourceful with the Google, but I have self imposed a No Research policy for colon cancer as much as possible.  Curiosity got the better of me this weekend and I looked up the recovery time for my second surgery on my liver.  I found people talking about how difficult the recovery time was; one lady didn’t feel herself for a year and a half after her surgery.  Which probably means that how I feel right now, going through intense chemotherapy, might be the best I’m going to feel for a very long time.

Don’t worry, this post gets better.

My morning began like other cycle mornings; go to the lab, make a joke with the receptionist (today’s: “I’m here for cash and prizes”), get blood drawn.  The girl who drew my blood had drawn it before, so I was trying to remember what we’d talked about last time so I could be that considerate patient who asks follow up questions.  Then I remembered: we talked about her boyfriend having gout.  It was kind of awkward then, she didn’t mind, but I figured it’d be really awkward to bring up again.  I let it go.

Waiting for my oncologist was more exciting than usual.  My mom is very active in the local club for Italians, and had talked to one of her friends whose son not only had colon cancer, but had gone to SCCA and had my same doctors.  On a hunch I guessed that it was one of the patients whose profile I’d read on their site.  My favorite part of his story is that as a UW professor, he loosely knew Batman and emailed him for some advice after he was diagnosed.  Batman called him within 10 minutes and had him in his operating room 72 hours later.   Batman is the #3 surgeon in the country for colon cancer; people fly in from all over to see him.  Oh, and the University of Washington Medical Center is ranked #5 in the country for cancer treatment.  Think I’m in good hands here?

I’m off topic now.  I whispered to my mom that I thought he was sitting behind us in the oncology waiting room and got confirmation when he was called in shortly before I was.  I had my weight taken, blood pressure and temp checked, all that, then waited for Sam.  Big surprise, he wasn’t alone.  I guess Italian moms don’t keep secrets; this patient’s mom had told him I would be in on Tuesday as well, so he had been looking out for me also.  Sorry to state the obvious, but once again it was so uplifting to hear from someone who had gone through what I’m going through, and I’m not just talking about having an Italian mother.  The first thing I asked him about was the liver surgery and he said “Oh, it was a breeze.  I was back at work 7 days later”.  So I’m not sure what surgery I was reading about a few days ago, but I seem to be in for practically a drive through procedure.  He assured me the neuropathy would get ridiculous soon and we bitched about one of the drugs in my chemo routine, Oxaliplatin, like Jerry Seinfeld talking about airline peanuts.  He’s just about on his very last chemo treatment, so I asked when he was diagnosed.  Dr. Whiting almost cringed when he said two years-he quickly jumped in to say that was extremely fast, and I should not take that as a guarantee I will be off the hook in 24 months also.  Oof.  So for those of you who have told me you love my blog, you’ve got two more years to look forward to at the very least.

My meeting with Sam continued, and yes, flu shots are a go.  I learned I’m no longer getting Avastin (*guitar solo*) because I’m getting closer to surgery (November 5th), and I learned I didn’t have to take those steroids if I didn’t want to, they were just there to help with side effects.  I happen to feel better without them, and I don’t want to put my baseball achievements in jeopardy of never making it to Cooperstown.  I asked him for more reassurance that the cancer is losing and he pulled up the results from my blood tests that morning.  I think my CEA levels are in the 80′s, continuing their downward spiral.  Then he said “Oh, your potassium is too low”.  TOO low?  Not just really low, but too low… for what.  Oh, and my platelets, also TOO low.  I knew there was a chance that certain blood test results might mean I am not currently strong enough for chemo, I just had no idea that could happen when I felt so good.

He said “It’s mandatory that you follow what I’m about to tell you.  This is a snow day.  You can’t have chemo for another week, so use this week to feel good, get strong, and have fun.”  Do other oncologists talk like this?!  He just put the most positive spin on something that I assumed was bad, bad news.  There are actually some pretty big perks to this; one being that it bumps my last cycle to within one month of my colon surgery.  Previously I was in a weird spot where I might need a mini chemo to make sure I didn’t go too long without it, but this puts me in a more comfortable range.  And it works out much better for the two concerts on deck; now I will be wearing the red sequined fanny pack to see Hall & Oates, which just feels so right.

I told him a Hall & Oates concert was on the bucket list, and immediately regretted it.  It’s so weird to use the term bucket list when you might actually be holding your bucket.  We had a great talk about it though.  He thinks it’s important to have bucket lists-he has one but hasn’t gotten to work on it yet.  And having cancer doesn’t make me immune to getting hit by a bus tomorrow.  Going into this I was probably less afraid of death than most people.  At least I had accepted that it happens to everyone, but this has made me realize I might be okay with it some day, but I’ll do whatever it takes to delay it.  This brings up all kinds of feelings for another blog post some other time (I’ve got at least two years to cover now), but I brought this up to illustrate how sorry I felt for his next patient, because overall, we spent so much time talking today that I’m sure a few poor saps had to sit waiting on that stupid exam table for quite awhile because of me.  I know, you’re probably wondering if no chemo also means no celebrity guest but you’re wrong.  After we left SCCA we went out for mediocre Mexican food and sat next to local sportscaster Paul Silvi.

Snow days are awesome.  I could have gone home and logged on to get some work done, but that’s totally not how you have a snow day, limited PTO banks be damned.  I took a giant nap this afternoon, but I want to carpe diem the crap out of this next week.  Instead of being queasy this Saturday I’m going sailing.  I might go back to Quinn’s to swim in that delicious wild boar sloppy joe.  I might even take the twelve vials of prescriptions to combat all my side effects out of my purse to lighten my load for a few days.  I’m going to not have cancer this week.

One Month Cancer-versary

That ill fated CT scan was July 13th and perhaps my celebration choices are questionable.

My parents are on vacation and I am in their house right now, about to steal one of their cars.  Okay, they know about it, but still.  I think I finally have the hang of these anti nausea pills and have figured out how to stay ahead of that side of chemo ickiness.  There’s still my gut issues to work out, but we’re definitely making progress.  Today could have been a blue ribbon day were it not for an unrelated migraine.  Come on body, get it together. 

I have lost 17 pounds since this started.  I found a box of shortbread cookies my mom reserves for semi special occasions and got to work.  Normally I would balk at one person leaving the amount of cookie wrappers my entire family might not go through in one sitting, but I know my mom won’t mind.  And to make it a cliche binge eating session, I was crying as I was shoveling cookies in my mouth in front of the tv.  Rather than tears, I prefer to call them liquid feelings-I was actually rather happy during all this.  I was thinking about how lucky I am to have parents who will let me steal their cars and eat their cookies, about cousins who have been sending encouraging notes even when I am slow to write back, about friends who still treat me like a normal person, about coworkers who enthusiastically ask me about treatment, about people I haven’t seen in a long time who have passed along hilarious and upbeat messages, text messages accusing me of being a diva, about the people I don’t even know who I hear are reading this blog, about finding a good explanation of Chemo Brain, about the secret teams my friends have created to take care of me (I don’t even know half of what they’ve planned), and about all the reasons I have begun calling myself the Luckiest Cancer Patient Ever.

I really hate that whiney “chemo sucks” campaign, but it is so true.  I’m basically going to have the flu for likely the next year at best.  Lately I do spend a lot of my time rolling around in bed groaning, but at the same time I’m still able to remind myself of all the support you guys are sending.  Having a little glimmer of positive energy during all that truly helps.  Thank you. 

Now let’s close out this post so-sappy-it-would-make-Hallmark-barf with the Butt Joke O’ The Week, courtesy of my old high school friend Heather:  Now when someone asks “What crawled up your ass and died?”, you can say “Cancer”.  Seriously you guys, one good PET scan in and I will be running around in a faux-crabby mood just waiting for one of you to set this one up.  Save the date.