Chemo Session 1

Let me start by explaining what many of you may know but which I did not which is that chemo is not just an infusion session where you are in and out and then you get to just hang and relax until your next session.  Chemo is a full-on cycle of activities like a machine with prep work and post work and consultations and evaluations and so while the infusion is the thing I was focused on, that is just the BIG piece in the cycle, but there is so much more to it than the infusion. 

Each cycle starts two days before the infusion with a urine and blood analysis to make sure you are healthy enough to get the infusion.  (Which sort of reminds me of the whole process of making sure death row inmates are sane and healthy enough to be killed…weird and I am trying not to make an analogy there in light of my partnership with my chemo where I am trying hard not to see chemo as a poison or a killer!)  If you are healthy enough then yeah, if you are not then there is a whole bunch of stuff they can do to get you healthy but your infusions will be delayed or halted until you are healthy enough to take them again.  If you pass the urine and blood, then you start taking your pill-based steroids the day before chemo, and then a Zyrtec (sorry, had previously said Zoloft which was wrong) the day of chemo before you even show up for the infusion.  At the infusion they give you additional anti-nausea pills and Tylenol, and then they actually do a saline drop to hydrate you before they start putting in any drugs, and then you complete your infusion.  After the infusion, you have five days of shots (that you are supposed to administer yourself, yah right!!!) that go into your stomach to help your bone marrow produce more white blood cells to keep you healthy enough to take the next infusion.  (I got five days of appointments with the infusion nurse bc there is no way I can stick myself with a needle!)  You also go home with Imodium AD in case of diarrhea, stool softeners in case of constipation, a recipe for a mouth wash that you have to use after every meal to avoid mouth sores…and a whole slew of instructions for the many weird things that can happen during the “cycle.”  During week 2 you visit with your oncologist to make sure everything is going well, and then week three you start your urine and blood tests again and get ready for the next cycle.  That is what the next 17 or so weeks will be like for me.  It’s a lot, definitely a full time job, but I am good at tasks and lists and steps and so I feel very well in control now that I know all the steps involved. 

So the best way to describe MY first chemo “cycle” is to say it was bearable.  I am happy to report that there were no tears.  I wasn’t sure what to expect and you all probably saw that I woke up at 1:15 that morning and could not get back to sleep so I was worried.  But I think I was so jacked up on the steroid that I was more like hyper and jittery than scared or sad.  My cheeks were burgundy and I was winded and the infusion nurse let me know that I probably had woken up bc of the pill-based steroids and not necessarily bc of anxiety.  That actually made sense to me and made me feel a little bit better.  The day started out with some frustrations, though. 

The Kaiser infusion center has maybe 15-20 infusion rooms, some private rooms for longer infusions and some curtained rooms for shorter infusions.  We were promised a private infusion room bc my infusion was supposed to be 4 hours, but when we showed up they had no private rooms so we went into a curtained room that was like 4x4 feet without enough space for Chris and I and all the comfort amenities I brought and I was super bummed.  I was scared and jacked up on steroids and have no privacy plus I was privy to all the beeps, shouts, conversations, aggravations, etc of the fellow chemo patients, plus the laughs and jokes of the staff which probably irritated me more than anything because didn’t they realize this was NO TIME FOR JOKING OR LAUGHING!!!  Then before they even started the infusions, the infusion nurse came in and starts telling me about the shots I am going to have to self administer for the white blood cell counts, and I am like, yah, that's not going to happen. So they set me up for appts with an injection nurse every day (this is for the white blood cell shots, I actually got my first one yesterday and it was fine but there is no way I could have done it myself).  Then the thing that really killed me is that they had trouble getting an IV in so they had to try three different veins and it was painful and it sucked and I was like, um isn't this what you do all day every day?  It was crazy.  I had specifically been told not to worry about getting a port bc I had great veins and then they couldn’t get the damn veins to work and it was just not a good start to the day!!  (I’m a whiny, baby I think, sorry!)

Once they got me started the day was fine, but long.  The staff was nice, Chris stayed with me the whole day, my mom and sister brought me a yummy turkey burger for lunch, and I binged on Scandal episodes during the entire infusion.  We ended up getting moved to a private room about 2- 2 ½ hours into the appointment which was much nicer, but what should have been a four hour appt turned into seven hour appt bc of the vein issues and because I had a reaction to one of the drugs, I think the taxotere, which gave me incredibly painful back and pelvic spasms similar to what contractions feel like.  Not fun.  They said it was pretty normal but they had to stop the drip, give me a steroid, flush me with saline and then start the drip again with the drug but at a reduced rate.  So we went in at 10 AM and got out at 5 PM.  It was a long, draining day.

I slept great that night and yesterday felt pretty normal- a teeny, tiny bit of nausea, a little bit weaker than normal, but I got in a 2 mile walk, did some squats and lunges, went shopping for some more feminine looking clothes so that when I am bald no one will think I’m a boy, and just sort of rested during the afternoon.  Today (two days out) I feel a little bit weirder.  Like sort of heavy and slow and my stomach is a bit more unsettled so we’ll see what the day brings.  I will still try to get in a walk...and will probably do some more Scandal bingeing.

Mostly everyone I have talked to says day three to like five or seven are the most difficult so I am just sort of waiting to see what this feels like for me.  the infusion nurse said she sees all sorts of patients who get no side effects at all so it's anyone's guess what this will be like before I go through the complete cycle, but really despite my whining I am optimistic. 

I asked Chris what else he thought was noteworthy about the session, and there wasn’t anything except he did point out that the infusion nurse laughed a lot.  Which was true.  And the main nurse in the oncologist department laughs a lot too.  I suppose it makes sense that you have to have that sunny disposition to get through the process of working with cancer patients all day, but I can be very snarky and so I got really irritated with the oncologist nurse during our chemo class bc she thought everything was so funny that happens as far as the side effects and it was so funny that many of her patients hair grows back differently than their original hair and I could not understand what was so funny about that. It made me mad.  I told Chris I wanted to shave her head and see if her hair grew back the same way and then see if she thought it was funny.   With the infusion nurse, when she was laughing and cheerful about them not being able to get a vein I also wanted to punch her in the face, which I'm sure she gathered bc I did not laugh or smile or commiserate with her at all.  But throughout the day as things calmed down and I settled.down and maybe relaxed off the roid rage, I really liked her.  She was nice and sincere and calming...hoping she will be my nurse throughout but we'll see.

I think that's it.  Really so far so good.  Hoping it stays this way.

Thanks for reading.

Sherri