LAST CHEMO DAY ....and updates on what the future holds.

I was heading into today with some dread, and not just because of the recovery I know I'm facing.  I can handle that.  Not fun, but I can do it.  What I've been thinking about, and not articulating until today, is my knowledge that I have a cancer that doesn't have a "cure."  They don't really use that word with lymphoma.  "Remission" and "progression free" are words they use.  So I had to corner the wily and elusive Dr. S.  But Nancy and I had a plan whereby she'd block the door until he answered.  LOL  Poor guy was uncomfortable, because I'm guessing oncologists don't want to make promises.  But I said I'm a planner, and I just need enough answers to formulate a picture of what to expect.

So here's the plan.

1.  Friday, May 24.  Go see the NP for Nadir day.  Get the expected bad bloodwork results and go on antibiotics right away, rather than waiting to see what happens.

2.  Three weeks from now - meet with Dr. S and see how things are going.

3.  Two months from now - PET scan.  See how the results look.  Make some decisions based on that.

4.  Most likely, in about 2 months, start Hycela shots (gel-like version of Rituxan, the targeted immunotherapy).  I'll have these every 2 months for 2 years.  It will prolong (most likely - no promises) my "progression free" period.  Minimal effort - a weird shot in my stomach. I've had them 4 times during treatment.   Minimal time commitment - maybe an hour?  Worth it for the possible plus.  Only downside is some immune system compromise.  Not too bad - I've become a serious germaphobe anyway.  No hand shaking.  No touching door knobs, elevator buttons, etc.  Dr. S says it's "fashionable" to do this now.  I've always been known as "fashionable."  HAHAHAHA 

I asked about removing Frank, my dear port.  He said, "a year."  What?  Well, I could probably have it removed before then if I want, after the first PET results.   A family vote (with friend Lynne's educated response weighing heavily), and Frank stays for the year.  WHY?

The first year is the vital year for me and my "progression free" period.  If I make it through the year with no progression of disease, I'm good to go forward with yearly PET scans for another year or two.  After that, PET scans happen if I feel I want them,on some schedule.  (I do.)  They would normally not do them until/unless you're symptomatic.  But Dr. S agreed that I was riddled with the crap and had no symptoms, so maybe my symptom meter doesn't work? Or I'm just too stoic?  Or not tuned into my body?  Whatever.  He agreed my case has been weird.  OOH - you do NOT want to be weird in medicine.  Nope.  You want to be "routine," "typical," "average."  Anyway - my remission could be 5-10-15-20 years - or lifelong.  Who knows?  (No one on this earth, for sure!)  If I leave Frank in - it'll be like carrying an umbrella and it won't rain, right?

So - if/when it comes back - if it's after a year, they treat with a different type of treatment - probably oral chemo - if it returns.  NOT this RCHOP crap, which I can't see doing again.  And if it's 10-15...years, who knows what they'll have come up with by then? 

If it comes back within the year - different ballgame.  More intense chemo.  This is absolutely not in my plan at all.  Why?  Because I said so.  I never used that on my kids, but I'm willing to use it on my own body!!!!

By the way, my sweet Val wasn't there today.  She was off in Nashville celebrating the big 3-0.  She had texted me how sorry she would be to miss it.  She texted me this morning, again.  So sweet.  I missed her.  But in a way it was interesting that I ended up with the two nurses with whom I started my journey - the first day when I had the allergic reaction.  The one was still in training at the time and now is well into her stride in the job.  She was sweet and smart and great in handling my tears during the stupid red stuff.  (Thank you again, Liz, for that spotify play list.  Cranked up much louder than I'd regularly listen to anything, it helped me mentally block out some of that awful.)  And it wasn't hard to say "goodbye and thank you" when I left, as it would have been with Val.  Maybe that was good. 

I wore a special shirt today to commemorate my big day.  I took a thank you gift of a big basket of snacks in for the chemo nurses.  But I wouldn't ring the "good news" bell on the way out, because I'll hold that for a year from now.  The receptionists did shake their silly pom-poms for me.  LOL

YAY!!!!

Today's temporary tattoo - Mickey Mouse.  A celebration kinda tattoo.  :)