Follow up visits

I'll have frequent (at least they feel frequent) followup visits for a bit.  I saw the NP today and will see the Dr in 2 weeks.  Then the PET scan will be scheduled, as well as a visit to have my dear port Frank flushed and to get the Hycela shot in my stomach.  I'll know the timing of these things when I see Dr. S in 2 weeks.

Meanwhile, this recovery is certainly worse than the others, as expected.  So much fatigue.  Just talking is exhausting.  The cramps in my legs and feet started being really bad last night and this morning. Hard to walk until they started to work themselves out.  The heartburn/acid reflux is just horrible.  I have a real empathy for people who suffer with regular heartburn now. It's hard to eat.  Baked potatoes are my staple for the last few days.  It's hard to sit still with all of the pain and burping and the feeling of it all backing up into your throat.  When you lie down to sleep, it all feels like it's gonna come on out in a pretty unpleasant way.   I know it's temporary, but it's still unpleasant.

My numbers are super low, of course.  But they're all so happy I made it through without needing Neulasta, which will raise your white counts.  Neulasta has some unpleasant side effects, like bone pain, and I'm happy to have avoided that.  I start antibiotics today, and will keep track of my temperature, as usual, until this period has passed.


I keep saying - just a few more days and I'll start to be on the upswing....and not have the impending downswing.  Part of me feels "I"ll believe it when I see it." 

In a couple of weeks I'm going to start PT to try to get some of my strength back.  Yes, I'm still carrying Robinson around.  Yes, I'm still able to walk up the stairs at the Dr office (I swore I'd do it every time).  But it's all exhausting.  I need to get back to where stairs don't wipe me out!

No hair growth yet.  HAHAHA

I know people are happy for me that chemo is over.  I'm happy for me, too.  But for me, the real celebration will occur in a year.  Frank will be removed, and I'll be able to feel like it's all behind me.  That'll be the big moment for me.  Until then, I'm in Phase 3.  Phase 1 -surgery and diagnosis and annual scans. Phase 2 - 4 months of yuk.  Phase 3 - scans and shots.  Phase 4 - get on with life.

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.  :)

Nadir day....

I can't remember what I've explained, so I'll explain.  Nadir means "the lowest point."  In my case it means the time when my blood levels reach their lowest point.  That's today.  And, as expected, they are super low.   No surprise. 

This round of chemo has been harder than the last in terms of recovery.  Again - expected - but that doesn't make it any easier to get through in the moment.  Lots of bad days.  Lots of difficult side effects.  Terrible muscle cramping.  Terrible indigestion/heartburn.  Headaches. Breathlessness that causes coughing just from talking for a few minutes or walking across the room.   Lots of tears. Plenty of feeling sorry for myself.  Today I've turned the corner and just feel tired.  At last, "just tired" is awesome. 

On Saturday evening my temperature hit the 100.4 benchmark.  At that point you have to call the Doctor.  Lucky for me, my own Dr was on call.  He called me back and said that I should just start antibiotics right away.  We are REALLY trying to avoid a trip to the ER.   Talk about germs....  No way I want to end up there.  Today "my" NP said that next time I'll just get on the antibiotics and we won't wait for a reason.  Next time.. LAST TIME!

You'll be happy to know (I'm sure you've been worried about it  LOL) that Robbie has settled comfortably into life with one afternoon nap.  Life is much easier for all now, but especially him.   He's back to his usual happy and chill self.  I'm happy to be back to feeling well enough to enjoy his company fully.  I will enjoy these next days with him, knowing that next week will bring another treatment with another 10-12 days of recovery.  FOR THE LAST TIME!!!!


Funny thing about certain side effects of chemo.  Some people lose all of their hair - everywhere. For some people their nails stop growing.  My fingernails are still growing but my toenails seem to have stopped growing.  Some of my hair is gone totally, some partially.  I've lost of a lot of my eyelashes and eyebrows and almost all of the hair on my head, but not all.  Some of the hair I've lost could stay gone forever and I wouldn't be sad.  It'll be interesting to see how long it takes for all of it to grow back.  I am sick and tired of hats (only wear them in public) and once I have an inch of hair on my head, I'll ditch the hats for good.  And good riddance - they're hot!

That's it for today.  Next update....I hope it'll be once it's behind me and only recovery left to go.