REMISSION

That's the word the Doctor used.  I love that word.  That's my status.  IN REMISSION.

Looking back on chemo, I don't remember it being all that bad.  I've just reread my whole blog, and I know there were tough days, weeks, times, but I don't remember feeling like I was at death's door or anything.  Rewriting history some, maybe, but also I tolerated  RCHOP well, as most people do.  There were more emotional difficulties than physical, aside from the major steroid crap.

So it's behind me.  And we can just hope that IN REMISSION lasts a long long time.  With follicular lymphoma, they don't ever say "cure."  It's just trying to keep remission going as long as possible.  I will go for the targeted therapy shot in my stomach every other month for 2 years.  PET scans maybe annually for a couple of years.  Then just going forward like a regular person until, or I should say, "IF" remission ends.  (It most likely will end, but let's hope not for decades.)

Two things lit up on this scan.  A polyp or something in my colon, but I had a colonoscopy in January, so he's not concerned about that.  And my thyroid.  But I've had thyroid disease for almost 30 years, so he will order a thyroid scan just to be sure.

And I get to have Frank removed.  My beloved and hated port, Frank.  Goodbye to you! 

Now if my hair would straighten out instead of being all poodle- curly, I'd appreciate it.  But it's a dang sight better than wearing hats!!!!!!!

I'm feeling a little blah about it all, maybe because I guess I expected this result, or maybe it hasn't sunk in, or maybe I'm in disbelief.

As we approach Thanksgiving, I know I have much for which to be thankful.  One of the things I'll be thanking God for are the gifts of cancer.  I've had special encounters - met wonderful, loving, people - connected with some people in a special way.  I've been the recipient of so much prayer and love.  So many people have helped out in ways big and small.  I have felt richly and truly blessed, despite having cancer and going through chemotherapy.   No one has ever felt more loved than I have these past months. 

#4monthsofyuk

#worthit

Hair is more important than it should be.

My eyebrows and eyelashes, nose hair, arm hair, hair that needs shaving...ugh...it's all coming back. 

I have just about 1/4" of hair on my head, but it was freaking me out a little because it was mostly grey.  So I was sure that coloring my hair back to the color it was for the last 20 years would solve everything.

I've known Trish, my hairstylist, for more than 20 years.  She said she'd never seen me worried/freaking/concerned about my hair the way I was today. 

So it's colored.  And now I have to get used to how I look...again.  I've had to do that so many times in the past 6 months.  I just want to get back to looking like myself.  Not there yet, but getting there.  I think, sometimes, I look like an old man.  Who's that old man in the mirror?  Shoot - it's me.  LOL

So - although I'm not used to how I look, and I'm not 100% sure I look right, I'm going hatless and just going forward.  I'm a chemo survivor.  Get over it, those of you who are looking at me with "that look." Then - maybe I'll get over it, too.  HAH

I'm not sparkly any more...

...except in personality.  HAHA   My PET scan results show resolution of the lesions.  There are 4 spots of some inflammatory activity.  Three are on my spine and one on my sacrum.  Dr. S feels that these are just residual activity from bone reaction to chemo and recovery, not active lymphoma.  So for right now - no active lymphoma showing on the PET.  That's great news.

My mother had a huge crush on Dr. S. She was his patient for 15 years before she passed.  I like him and all, but I don't "like him like him." LOL   For me, he's more McBrainy than McDreamy.  Today he was - as usual - McSlippery.  He doesn't not like to be pinned down....at....all.....  So when I mentioned the next steps..he balked.  Meghan said, "Mom needs a plan" and I agreed that a plan can change, but there has to be a plan to start.  So, after a lot of hemming and hawing, he put the future in another new way.  Every time I go, there's a new look to my future, based on his responses. 

In 4 months I'll have another PET scan.  If there's no active lymphoma on that, we can call my status "remission."  At that time, we can schedule dear Frank, my lovely port, to be removed.  That means standard IV chemo is behind me.  Worst case scenario is there is active lymphoma on that PET and we go to a more intense chemo protocol, and potentially harvest and then later transplant bone marrow.  He indicated he did not expect this to happen at all.  He even commented that we pushed into the RCHOP chemo protocol to keep this movement into a more intense lymphoma from happening.  So we don't expect that.  We expect remission.

Lymphoma is slippery, too.  We anticipate a recurrence.  It might not happen during my lifetime, but 15 years is considered a good remission for follicular lymphoma.  If/when there's a recurrence in the future, the current protocol is an oral chemo or targeted immunotherapy.  There are also always clinical trials.  And let's face it - in 15 years anything could have been discovered.  But not traditional IV chemo.  Thank GOD!!

I'm ready to say goodbye and good riddance to lymphoma for however long.  Can't wait for the four months to pass, although I don't wish time away.


Meanwhile, I'm feeling good.  I made it through the DR trip without any issues at all.  I felt strong and able to handle everything I needed to do.  (I didn't do any actual work, and avoided the sun, according to doctor's orders.) The PT I started beforehand really helped a lot.  (I'm still going  - building myself up.)

Now I just need to get this hair to come in a bit more.  Oddly enough (not odd at all) it's very grey.  It's only 1/4" long, but several friends have said to just let it grow in grey and be done with it.  I've dealt with a bunch of stuff in the past 6 months, but never in my thoughts did I see myself having grey hair in my near future.  So next Tuesday I'm getting it colored.  It'll be a challenge, given that it's 1/4" long, but I can't take the q-tip head look any more.  And this way, when we go on vacation August 3, I can go completely hat free and not feel as conspicuous when I'm swimming and whatnot.  Can't stand the HOT hats any more.  I went hat free in the DR and must say I've been mostly hat free ever since (except when I'm in "public.")

I'll post before and after hair pictures next week.  :)

And my next follow up...

Yesterday was 3 weeks from my last chemo.  If I were still getting chemo, it would have been chemo day.  I didn't miss it.  Not one bit.

I saw Dr. S yesterday, instead.  My blood counts are still low.  He seemed a little surprised by that, but indicated that it's because my bone marrow is having to work hard to regenerate itself (since the chemo killed so much of it) and doesn't have time to be worrying about making white blood cells and stuff.

In the last two weeks I've been going through the usual side effects.  Horrible leg cramps.  Horrible heartburn/indigestion.  Headaches almost daily for about 10 days.  The usual.  Just when I was thinking things were getting better, a week ago, I started with fevers.  Not too bad on Thursday, but enough that I started back on antibiotics.  Friday it went up to 100.4 (100.3 is the "call the Dr." number).  Lucky for me, Dr. S was on call again.  He said to continue the antibiotics, call back if I really started to feel ill, or if the fever went to 101.3.  Luckily, I started to improve and didn't have to do all of that.  The night sweats were annoying, but I think I sweat it all out.

I started PT on Monday.  My stamina is a joke.  I walked on the treadmill for 6 minutes and made it a total of .2 miles.  Lots of joking from Michael about that - and how I must have been walking like  Arte Johnson from the Gladys and Tyrone skits on Laugh In.(YouTube it if you're too young to know what that means. Haha)  I swear I was walking  I guess just not very fast.   Dr. S says I shouldn't expect too much from myself and get disappointed about my recovery.  It will take 6 months and it's not a simple linear progression.  I might feel great for a few days and then not feel great again.  He really believes that 6 months from now I'll feel better than I have in a few years.  He says I'd become accustomed to symptoms of the disease, figuring it was just my age.   Now that the crap will be gone, he thinks I'll feel stronger and have fewer aches and pains.  From his lips to God's ears!

I'm still immunocompromised.  I told him about my latest germaphobic tendencies - won't touch a stylus or touchscreen barehanded in a store (those things are never cleaned), won't touch an elevator button or parking garage button - won't touch a door handle or knob (except in one of our homes). I carry a lot of tissues and wipes to get all of the required touching done.  Dr. S that the human body is made to practically swim in bacteria safely.  But that right now, not so much for me, and my germaphobic behavior is a good idea, and will be for another month or so.  What about the DR trip?  Lots of Purell!  He also said I should stay out of the sun, and not work much.  I've always managed those two things on the DR trips, so that should be easy.  ;)

PET scan July 16.  Meet with him again July 23, and have my first post-chemo Hycela shot and have Frank, the port, flushed.  Then I'm on a semimonthly schedule.  Another PET scan in 6 months.

I asked the big question - from what date are we counting the "one year no disease progression" status?  He didn't answer.  He's a slippery one.  He indicated that after the PET scan in 6 months, there will be another.  Maybe that's the date where we'll say I made it.  I'll try to nail him down next visit.

Until the next scan, I'll just be working at PT, taking care of Robbie, going to the DR in 3 weeks, and watching for hair growth.  OK - not so much that last thing, since it's a little early for that.  But man do I hate hats.  So HOT.  If you are following this blog (and I'm guessing you are, since you're reading this), tune in for the next installment after the next Dr visit - July 23.

Meanwhile - check out this comedienne.  Gary W turned me onto this.  Her cancer and story are different from mine, but she says a lot of stuff that speaks to how I feel EXACTLY.  A great funny outlook. Even the story about the masses on her ovaries - although mine were lymphoma, not ovarian cancer.
 https://www.youtube.com/watch?v=ZGJMSPXuCFU

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.