1st Chemo Treatment

On Wednesday, my mom, dad, and stepmom piled into the car to head to Duke.  We drove to Cary, NC to spend the night with my dad's cousin and wife, whom I consider my aunt and uncle :)  We had dinner with my cousin, and another aunt and uncle. It was nice to see the family, and it was so very nice to have a place to stay close to Duke.

Our day at Duke started with a 9am arrival time (10 mins late) to the Lab area.  We waited about 30 minutes before my pager went off.  My dad came went back with me to get my blood drawn which will be used as a baseline.  They will run a CEA test, which can sometimes be used as a baseline for cancer tracking - or not, so don't get your hopes up.  They also told me that the redness of the skin around the portacath was an aversion to the adhesive during surgery - that wasn't normal!  I thought it was just a damn big bruise!  It's gotten so much better, but it was also nice to hear that this wasn't normal :)  So I need the super sensitive adhesives.  They inserted a needle into the port in my chest, applied adhesive around it to secure it, and the taped the short tube up until I needed it for dispersion of the chemo via IV.

Then we headed up to the GI Cancer Clinic to met with Dr Zafar.  After another 30 minutes or so, I was paged and we all headed back.  Fortunately the rooms are big enough to have 4 people, plus the resident and doc in the room :)  The resident came in first and explained what was going to happen today.  About 10 mins later, she came back with Dr Zafar.  He explained the possible side effects of treatment and what to do (page him, leave a message, vs send an email).  He explained how he did not want to get an email explaining how I just woke up off of the bathroom flooring having passed out.  That would make him pass out and then where would we be?

We were instructed to check out of the clinic to schedule another appointment for chemo in 3 weeks, and then we could go up to the Chemo Lab and check in for treatment.  I mentioned that our appointment wasn't until 12:45pm so we were thinking about going to lunch, which was fine too.  We were also instructed to go downstairs to the pharmacy and pick up the nausea meds that I was getting along with the Xeloda, which is the oral chemo that I'll take for 14 days (with 7 days off).  At the pharmacy, the guy taking my info told me that my prescription service, CVS CareMark, sometimes doesn't allow dispersion of Xeloda on site, only via mail order. He said he would call me if there were any issues with the prescription.  More on this later...

We headed out to lunch at a French bistro, La Rue Cler, and had yummy, yummy, yummy french food. And we were almost 45 minutes late to the chemo appointment - oops!  We sat around for 45 minutes or so, while they mixed my chemo treatment, and then i went back with my mom.  They hooked me to the IV, and first dispensed 20 minutes of steroids, then 30 mins of calcium magnesium, then 2 hours of Oxaliplatin (the chemo), then 30 minutes of calcium magnesium, and then the flush my port with saline and heparin to prevent blood clots.

During this three and a half hours, I was in a nice little infusion room against the window, with a comfy recliner, and warm blanket, and a TV (cuz daytime television rocks!) My mom had a smaller recliner and a warm blanket as well.  We took some short naps, but kept being interrupted by the beeping of the IV whenever the drip ran out at 20 mins, then 30 mins, then the pharmacist came back to discuss the side effects in great detail with us.

My mom switched out with my dad for a bit while my stepmom ran downstairs to the pharmacy to get my meds.  She came rushing back through on the phone telling us each to perform some task because of the prescription problems.  The pharmacy guy early decided NOT to call me and inform me of the pending issue with getting the Xeloda.  So I talked to CVS CareMark and got instructions to get a prescription to them from my doc, which my dad pager Dr Zafar to ask about starting the Xeloda later than anticipated.  I was totally annoyed with all of that, and my health insurance support contact from Aetna that calls to check on my progress through this journey was very apologetic today when I told her about this debacle because that was something she was supposed to assist with, but didn't realize that I was to take Xeloda.  She made up for it by calling CVS to check on the status of the prescription.

Side note on this "health insurance support contact" from Aetna.  Is it weird that I'm getting phone calls from my health insurance company to "talk" about all of this?  It's all confidential, but it's Aetna, so it's not confidential to them.  It just feels a little too "in my business", but I feel like I have to talk to them to "play the game" with the insurance company.  Don't get me wrong, I am extremely grateful to have excellent health insurance to cover all of this, but this just seems a little too big brother-ish.  Maybe it's just me.

Then it was all over and we headed home.  I immediately felt a little tingling in my hands - that's the aversion to cold.  And on the way home, the indian food leftovers tasted a little less spicy.  I drank some room temp water and it was tingly in my mouth.  I was hungry and munched on my snacks during the car ride home but also felt this new sense of fatigue.  I wasn't tired enough to sleep - just tired.

I also had a light dinner of soup and hot tea, and then headed to bed.  I slept a bit poorly.  I was cold when I got home, but hot in bed.  I tossed around every once in a while instead of sleeping the whole night through.  I awoke about 9 hours later and was awake, but not as refreshed as I have been lately.

The day started out well, with the exception of the result when I forget not to touch cold, or even cool, items.  Even the glass of water that was sitting out all night was cool to the touch, and therefore a bit tingly on the fingers.  Such a weird feeling.  I wanted to wash my hands and I usually just turn on the cold water, because it's never really cold water in the summer/fall, and then stick my hands under to get them a little wet.  Boy that is a shock of pins and needles to the hands - OUCH!  I can't go in the refrigerator nor the freezer.  I've got to buy some gloves to get around in the kitchen.  This is gonna get old real fast.  These are even more barriers to me actually doing things in the kitchen.  It's like I'm just not destined to cook.  Where is my cooking house boy???

I felt like being productive, so I started the day by downloading some of the pics off of my phone into iPhotos, since I'll be getting an new iPhone 5 soon.  Then I started working a bit, and ended up going all day.  I've got so much work to catch up on, and I felt like working.  After lunch the nausea started.  I thought it went away for a little bit, but then it came back.  I took a nausea pill around 3pm and there really hasn't been much change.  It just feels crappy, but not debilitating.  I could still work, although I bitched to colleagues about my nausea (just I like to bitch about my uncomfortable state).  I felt hungry every once in a while, and that seemed to help.  And then I had a bite of sugar and that really seemed to liven me up.  So I think sweets will bring on appetite.  Note to self, do not eat sugar until food is ready.

I also had a mild, dull headache for most of the day.  So the side effects are mild, nothing I can't deal with, but it will take some getting used to.  This is a new normal, and hopefully I will only have to deal with all of this for less than a year.  Oh, and I think i'm losing my taste buds - damn it!

Tomorrow I need to get move around more.  I need to exercise, although I was informed that I can't lift weights heavier than 5lbs with this portacath.  So that limits my personal training sessions.  I'll have to see if PT will even be worth it if I so limited with weights.  But I can still walk/run on the treadmill, and use the sauna and steam room at the club.  I NEED to get back to the club and into a routine again.

And I need to figure out my food situation.  I have this awesome meal from Nourish tonight. Nourish is this healthy food service that delivers one a week.  You choose from a menu that is posted Monday afternoon, and this place is so popular the menu is sold out in less than 5 hours every week!  Tonights meal was Falafel with grains and excellent raw vegetables.  And it tasted like cardboard to me :(  I was so disappointed.  I know I still have my salty and sweet tastebuds, but I wonder if that's it.  I get this pang in my jaw during the first bit of food - kind of like the sour feeling when eating a watermelon jolly rancher.  It's very weird.

Wow, so that was one help of a post.  A lot has happened over the last 48 hours.  And so much more to come.  I'm still in good spirits but just a little shocked by the side effects.  And I'm a little more nervous about the side effects of the Xeloda that I will start tomorrow night.  Hand/Foot Syndrome, which is basically like getting a sunburn on your hands and feet. yay!

So one chemo treatment down, only 4 to go before we re-evaluate the situation.  I can do this :)

much love,
Sarah xoxo