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.

OOOOOOONNNNNNNEEEEE TTTTTOOOOOO GGGGGOOOOOOOOO!!! (83.333333% finished!)

After the totally tanked blood numbers I had on my last visit 10 days ago, I was really worried that my counts wouldn't have come back up enough for them to feel comfortable giving me chemo yesterday.  Went in with some trepidation.  Dr. S on vacation, so we saw Kathy the NP before the chemo.  She came in all smiles, and said my blood counts were all within NORMAL range.  Not normal for me in chemo.  NORMAL for a NORMAL person!!  I have such respect for my medical team.  But I also have more and more respect for the crazy good machine my body is.  It's doing it.  It's handling it.  It's working the system.

I have a dear friend Katie who has helped me understand my feelings about being a "cancer fighter" or "cancer survivor."  She had breast cancer and always just saw it as a mistake her body made, and needed to be corrected.  I didn't do anything to cause the lymphoma.  It's not even genetic (or so we say now - never know what research may discover in the future).  It just happened.  Who knows why?  I don't.  But the idea that I'm fighting my own body doesn't resonate with me.  I'm letting my sweet, smart doctor and nurses do the fighting.  I'm letting my body do its thing.  And it's doing it really well.  It is smart and strong and knows what to do, and it's doing it.  I'm letting it.  I'm encouraging it.  I'm trying to stay positive.  I'm doing what I'm told.  The medicine is working.  My body is a great machine and I have great respect for it. I've complained about my body and its foibles and weaknesses for the past several years, but now I am building up a greater respect for it, and I will try not to get annoyed with it in the future.


Chemo day went smoothly.  I had my dear nurse Val, and that made my day.  She knows just how to deal with me.  She's turning 30 soon, so she's like a funny, irreverant, smart, caring, friend of one of my children.  My kids naturally draw those types of people to them, so it's easy to picture.  All went smoothly.  First the premeds - zofran and benadryl - the dopey drugs.  But when I would have liked to nap, time for the shot in my stomach.  Then the detested red stuff, which is really dangerous and scary and must be put in slowly by Val straight into the port with two syringes. (The red stuff is a vesicant, like mustard gas.  Nasty stuff.  Don't read too much about it, or look up pictures.  So says someone who did both. LOL)   Val was talking and talking, trying to distract, and I had music on in a headpiece in one ear.  I was listening to the awesome Spotify playlist a group of us put together of comforting and encouraging Christian music. (https://open.spotify.com/user/emckernan27/playlist/5ZCrRzuwUEQocF7cw0GlMb?si=FDt4JLk8TJqwF1BBrks0Gw)  Between the music distraction and Val's chatter, I got through it without a tear. Then a few more little things, and then the bag of the C.  That takes an hour, so Nancy runs to get our grilled cheese sandwiches, we eat lunch, and we are ready for home. 

I dozed the afternoon away and got up to bed at nine.  Not the best night of sleep (thank you very much, prednisone ;) ) and feel pretty ok today.  I'll nap.  But I'm fine.  Letting my body do its thing. Praising it for its good work.  Appreciating it. Feeling blessed.

My cool sparkly heart tattoo for chemo #5

My awesome inspirational new Tshirt

When you get hot and everyone else is cold, you have to make a big fashion statement...

The hat on top of the head didn't help cool me off, and maybe wasn't the right fashion choice.

Finally just had to go au natural.  There's a lot of fuzz on there, the lighting didn't show it.  It took a LOT for me to take my hat off.  A lot of sweating and encouragement.  

He thinks I'm funny and loves me - fuzzy or not.

BLOOD LEVELS and NEUROPATHY

I went in on Monday for my usual post-chemo bloodwork and visit with Kathy, the Nurse Practitioner.  My blood levels were seriously awful, which wasn't surprising.  I have almost no white cells and neutrophils.  That makes me very susceptible to any bug that might be wandering around waiting to be picked up by an innocent bystander.  I don't go to stores, I rarely hug and kiss people (other than Robbie!) I've avoided humanity in general.  But still there's a concern.  So they put me on prophylactic antibiotics.  That's ok.  Antibiotics don't scare me.  I'm fine.  Whatever keeps me safe and on schedule with chemo.

Meanwhile - I have been having more and more numbness (neuropathy) in my fingers.  It has spread down my fingers to about halfway, and I've got some in my thumbs as well. (Typing is a bit challenging.) Because of that, they're removing the O from my chemo protocol.  So from this point forward I'm having RCHP rather than RCHOP.  Dr. Scola says that the O has done its work so it won't be missed.

Still not feeling totally recovered from the last chemo.  So now I know that the cumulative effect thing isn't a joke.  There are my low white counts, my hemoglobin is below normal  (anemic) and now  my thyroid is a little off.  I've been taking thyroid meds for almost 30 years, so a tweak in dosage isn't a big deal, but maybe it'll help?  I'll take whatever small improvement I can get.

Taking care of Robbie is pure joy for me.  But this week he has decided to change his nap schedule.  Yes - babies do that.  But I guess we were hoping he'd decide not to make any changes until after I've recovered.  Yesterday was TOUGH.  I got him down for his morning nap, but he would not go down for his afternoon nap.  It was a long and exhausting afternoon.  Today Meghan and I decided I should try to get him to stay up and skip the morning nap, and see how that worked.  I kept him busy and fed him constantly from 7-12 and he made it!!!  Then he slept for 3 hours and woke up happy as ever.  Let's see if that works tomorrow.  It's a much easier schedule, and I hope he agrees!

One month from yesterday is my last chemo (if all goes according to plans).  4 weeks from tomorrow.  I keep thinking about these numbers, and they help me.  I hope they don't change.  I just keep looking forward to 6 weeks from now, when I'll be starting to feel better, or 7 weeks from now, when I'll be looking behind and seeing how I made it through.  Or 8 weeks from now, when maybe my hair will start growing back.   The 4 months of yuk are down to a little more than 1.  I'm doing it.  I have super bad days.  I have ok days.  I have good days.  But I'm doing it.  Some days I feel like I'm really doing well.  Some days I don't.  But I'm getting there.

RANDOM THOUGHTS #3

THE DOG DAYS OF CHEMO
These first days after chemo are super stinky.  Exhausted.  Jittery.  Saturday and Sunday are the worst.  I'm hoping that things will pick up tomorrow.


THERAPY DOGS - are a great idea.  But Morristown seems to have a run of really awful therapy dogs.  In fact, I'd say if the only qualifications are that they are dogs and can wear a vest, these dogs are winners.  But if there are more qualifications, I don't know how these dogs passed.  Every time we're there, there's a dog or two.  They don't want to come near the patients.  They don't seem to desire to be pet.  They sniff at food, or whatever you have on your tray.  They only seem interested in their owners.   It's nuts.  They don't bark or bite, so there's that. But I have no idea how they are considered "therapy" dogs.  Robbie could wear a vest and come in and be a therapy baby and provide MUCH MORE therapy than these dogs are doing.  Crazy.


REIKI - is great.  I was never a believer.  I can't do my usual deep tissue massage because of the lymphoma, so this is my option.  And while I wasn't sure it would do anything for me, I do feel some relief from it.  It's strange, but I feel relaxed after.  It's the highlight of my Saturday after chemo.

I'VE BECOME MY MOTHER - and strangely, my father, too.  YIKES
We've all been laughing at how I resemble Pop with my hairlessness.  It's scary but true!  But then I find myself doing things like my mother.  I sometimes do things on purpose to make Nancy laugh that I'm like Mom, but sometimes it's not on purpose.  Thursday night I was rubbing lotion into my hands, and I suddenly saw blood on the magazine I was holding.  My mother had a blood disorder.  She used to bleed and not know the source, and have to go looking for a nick or scab or something.  We sorta laughed about it.  So here I was, and I realized my finger was bleeding, more than 12 hours after the finger prick.  I was carrying on about how crazy it was that I was just suddenly bleeding.  Then Nancy mentioned that the very last med they give me during chemo is heparin, a blood thinner.  SO MANY DRUGS.  I can't keep track!  We got a lot of laughs about that.  Nancy says we will become our parents no matter what.  I've hoped only to get the best of them, but apparently some other stuff comes along too.  I didn't expect baldness and bleeding!