"Draw the Line"

At Virginia Mason getting another round of Rituxan right now.  We've played around with the timing and dosage a bit and I finally can do my chemo as an outpatient!  I get double the dose at a time and then I only have to do it twice every six months instead of four times every six months.  Last time (end of May/start of June) we got it done in 7 hours at a max rate of 400mL/h by increasing by 50mL/h every 30-60 minutes with no adverse reactions and just my normal I pre-meds of solumedrol (steroids), Benadryl, and Tylenol.  Today I had a reaction once we hit 250mL/h so that will likely be the max rate of the day.  Thankfully my reactions come much slower and less intense than my initial reaction.  I just get very dizzy and light headed, and then I feel like an elephant is sitting on my chest and I breathing becomes very difficult.  At that point my nurse stops my infusion, gets me on Oxygen, and pushes more solumedrol and Benadryl.  My body starts to calm down and over the next half hour or so I have less and less trouble breathing and I start to get a bit of color back in my face.

During my chemo infusion I alternate between being incredibly sleepy, and incredibly wide awake!!!  Sometimes the Benadryl makes me want to doze, other times the steroids have me wired!  When I used to do inpatient overnight stays I could never sleep because of how much energy the steroids gave me.  We couldn't even find a sleeping aid that would keep me from trying to coax all of the nurses into playing jump rope in the hall with my IV tubing.  No...really...one night I spent almost an hour trying to convince them to do that with me...

Every infusion location is different.  The one at Virginia Mason has both shared or private "suites".  I always am given a private one because my infusions last so long.  This time I have a window in my "suite" AND my chair isn't broken!!!  I have a tiny TV but I always bring my laptop and Netflix because when I say tiny, I really mean tiny!!  I'm not allowed to go walk around or cause trouble because I do have reactions and apparently chemo is a pretty intense drug...who knew!  When dealing with it the nurses have specific protocol and equipment that helps protect them from it.  At some places they even make you flush the toilet twice after you urinate if you're on chemo.  It's very strange to see people be so extremely careful to not so much as touch this drug, yet I'm sitting here with an IV of it being pumped into me!

"Fly Away From Here"

It's been far too long since I've written here!  I'm scared I'm going to forget my story (or more pieces of it) if I don't put it all down soon so let's play some catch up!!

I believe that the last post I wrote about my hospital stay was about Friday, February 15th when I was admitted into VM.  Pain. That night I was in SO much pain.  And had lost all use of my hands.  I remember it taking everything in me to enjoy a sucker that Robbie and Diana gave to me.  I couldn't re-position myself or roll or turn and needed nursing assistance every time I desired to move.  I just cried and cried and cried.

The next morning I was so excited to see Mom and Mama Jo.  I was in severe pain.  I was frustrated as the IV wasn't keeping and nobody could place one.  It was eventually decided that day that I needed a PICC line.  I was terrified.  That was a possibility at Kadlec but it didn't happen. I knew that it was a sterile procedure involving a scalpel and had no desire to be on the receiving end of that whatsoever.  However, by that time I had no other choice.  I finally agreed to do it so long as someone would hold my hand throughout the entire thing.  That's a big thing for me...I can do a lot if someone literally holds my hand through it.  They agreed and said that even if my Mom couldn't go in with me to hold my hand, they'd find someone who could.

I remember closing my eyes in my room as they came to get me for the procedure, holding Mom's hand the entire way there, and finding out that she had to wait outside and a nurse would take over the hand holding.  I didn't open my eyes once.  Not even a sliver.  I was fully convinced that if I didn't see anything I could't be terrified?  Who knows exactly why, but I literally refused to open my eyes again until I was safe back up in my room.  It really wasn't nearly as horrible as I thought that it would be and I made conversation with the dr (or tech?) and nurse as I held her hand sooo tightly.  The PICC line ended up being such a life saver for me.  My IVs kept dislodging and I'm a really difficult stick to begin with so to have a semi-permanent one placed that could both draw blood and accept all of my meds was such a huge blessing.

I know (thanks to Facebook) that Mom and Mama Jo had gone out and gotten me Cheesecake Factory for dinner that night!  That's the best part about being in a Seattle hospital...the Cheesecake Factory!!  Also, according to my Facebook page, they still didn't know what the rash was and the main focus of Saturday was to see if I could use my hands again.  By this point the pain was finally somewhat under control.  The crying because of it was cut back significantly.  I know that I was on two different doses and schedules of IV Dilaudid including an hourly PRN bolus that I was needing every hour, on the hour.  I was also on a quick release pain pill and a long lasting pain pill.  And, of course, a ton of steroids.  And about a million other random meds that were necessary at that time.  If there was ever any doubt that I was high as a kite from the pain meds, the following Facebook status that I posted that afternoon will take care of that: "Mom (DDeby Baketel Sutter, Mama JJonelle and my lovely AAmber Carriganhave been with me most of the time and have better updates than I can even piece together so feel free to use them for accurate health updates. If you'd like to hear whining about chocolate, pain, or on various aspects ofunicorns" High as a kite!