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!

2/3 FINISHED...And PET scan results.

A typical chemo day.  Get there around 8:45 - have a finger prick (which bled very well since I had my finger heater and glove on!).  Take vitals.  Weight still crawling up...  UGH. I was happy it was all with my preferred phlebotomist.   Then Dr. Scola comes in and he's very happy with the PET results.  Lesions have reduced or disappeared.  I'm way less sparkly.  Some of the sparkle can be attributed to chemo, so in some cases it's hard to know.  He explained that the bones now show signs of injury from the lymphoma, and are having to build back up, and that will take time.  But that things are looking decidedly better.  He never said, "extensive bone involvement," so Nancy didn't have to slap him.  PHEW!   I asked about the word "cure" and of course they all balk at that.  But he mentioned a guy who had gone through R-CHOP for Follicular Lymphoma and is now 18 years in remission.  18 years gets me to 76 years old.  I'm wishing for mid-80s so I can just wing it after that!   I asked about "maintenance" Rituxan therapy, and he said that would be a good idea, but he wouldn't commit to a plan.  That should be pretty simple - go in every month or two or whatever for a year or two, and get the shot in my stomach.  It's actually called "Hycele" in the shot form.  If I have to do that, I'm good with it.  It's a short visit, and not as frequent, and side effects are minimal, if any.    Everything I've read has said you can't "cure" Follicular Lymphoma, but if I can get a 25 year remission, I'm good.

I asked about a repeat PET scan - I said, "Will it be a month or two after chemo, or something like that?"  Dr. Scola said, "Yes, a month or two."  Between that and the lack of information about maintenance, my sister said, as we left the office, "You just can't squeeze more than a week or two worth of information out of him."  It's true - no one will commit to a plan beyond the near future.  I'm sure that's because things always change with cancer, but we are a people who like our plans!!!

Next we wait to be called into the infusion center (same waiting room).  When Val came out to get me, I did stand up and say, "YAY" pretty loudly.  Lots of stares and comments, and I "somewhat" loudly said, "I've got to go in.  Might as well go in happy."   Val is so great.  She told me she looked at yesterday's schedule and asked for me.  That made my day.  I'm just hoping she'll be with me for the next two.  We really have fun, and yet have serious moments together.  We talked about God putting people in the place where they belong.  We talked about how she wonders about her career in that way.  I told her she belongs right there with me, because she's making a difference.  I hope our conversation helped.  My scripture tattoos, cross earrings, etc., obviously tipped her off that I'm open to a discussion about faith.  Although yesterday Frank the port was sporting a neighboring Mickey Mouse tattoo, just for a change.  :) 

My chemo treatment is pretty labor intensive for Val.  First  hang the Zofran (anti nausea) steroids (anti inflammatory) Benadryl (antihistamine to ward off reactions).  Then the shot of Hycele (the R in RCHOP - it's a form of Rituxan) in my stomach.  Then the deadly hated red stuff she has to push slowly right into the port line (that takes about 1/2 hour and gets us up close and personal. In the middle of that, I just started crying.  The homemade orange juice ice chips are tolerable, Val is great, there's no pain, but that stuff really bothers me.  (By the way, I now have neuropathy (numbness) in the tips of 6-8 of my fingers.  6 are worse than the other 2.  I thought the red stuff - the H in RCHOP - caused it, and was hoping for a bit of a reprieve on that, but found out it's a different stuff that causes it, the O.  SHOOT!!! If the neuropathy spreads down my fingers, they'll reduce the the O by half.  But I don't care about that stuff.  It's the red stuff I hate.  ARGH).  So after shedding a few tears, and being comforted by Nancy and Val, I got through the red stuff.  Onto the O, which is a shot into the line, but takes just a few minutes.  Then they hang the C bag and it takes about 90 minutes to finish that, and Val finally gets to leave my side for a few minutes.

No foot massage.  I was out at 1:30, and she wasn't available until we were ready to go.  She did show me her crystals.  I'll go for massages, reiki, whatever, but I'm not going for the crystals.  Sorry.  I'll say a prayer.  That'll do me more good.

Home a little after 2, and I was woozy and off balance the rest of the day, and TIRED!!  Managed to stay downstairs until 9 or so.  Ate a good dinner, thanks to my angel Camille across the street.

Didn't sleep too well.  DING DONG PREDNISONE!!!!  Nancy is with Robbie this AM, but I'll go over and hang with them, because it's better than sitting here alone.

TWO TO GO. JUST TWO TO GO!!!!

MID-TREATMENT PET SCAN

Had a PET scan yesterday.  I tell everyone that of all of the scans I've had - MRI, CT, PET - PET is the easiest.  I don't recommend it, because it probably means you have cancer!  But if you have to have one, I think it's the best.

Prep is easy.  You drink 1/2 of a bottle of some delicious stuff the night before. OK, it's not delicious.  It's called Mochaccino Smoothie, and it's not too bad.  The other flavors were not appealing to me at all.   Anyway, you drink that the night before, and you have to fast for 6 hours before the scan.  Mine was at 5pm, so I couldn't have anything but protein before 11am, and then nothing (not even water) after 11.

You get to the hospital, go wandering through the basement of the hospital in a maze made for mice, and then you get to the Nuclear Medicine/PET place.   So you go in, they measure your blood glucose (must be below 150 - mine was 100 - I was HUNGRY!!!), and then they put some nasty radioactive stuff into your veins.  That isn't the most fun part, but it's quick.  Then you get a warm blanket and you sit for about an hour, sipping another bottle of your "smoothie."  After 45 minutes of sitting and sipping (sounds like a wine tasting), you drink the last 1/2  bottle, and you go in for the scan.  The tube is pretty big, so it's not claustrophobic like an MRI.  It moves regularly, scanning you from head to hips.  The whole scan is 21 minutes.  You can ask for whatever you want on Pandora Radio.  I always ask for the Eagles.  Whatever plays from that genre/era, I know every song.  21 minutes is just a few songs, and then you're finished and can go home. 

I made my technician, Nii, laugh.  (Second time he's been my PET scan guy.) He told me to start drinking the stuff after he finished the IV injection.  I said, "YAY, I can't wait!!!"  He really laughed so hard.  I told him that "YAY" is my signature word through chemo.  He laughed even harder! (I'm funny, remember?)  He's originally from Ghana.  We lived in Africa for a few years when I was a child, and he is amazed when I talk about travelling throughout the continent  - my mother (sometimes my father, too) and 3 small children .  It was a different place then, for sure.



So now we wait on the results.  Dr. Scola isn't looking for me to be cancer free.  He just wants to see progress.  I wouldn't mind being cancer free right now!!  I'm sure we'll hear the results when we see him on Thursday.  I just hope he doesn't say, "extensive bone involvement" again.  Nancy might hit him, or scream, or something like that.  HAHAHA (I can't even picture her raising her voice, so this is MOST unlikely.)

I've been feeling pretty good since the first week after the last chemo.  That week is tough - just extreme fatigue and weird jitters and whatnot from the prednisone.  After that, I start to get back into the groove.  Fatigue is a constant.  But I can manage it, as long as I'm careful.  I don't "run" upstairs or downstairs to get something unless it's absolutely necessary.  I carry Robbie a little less than before (and he's more mobile, so that works).  I've been to two concerts in the last week - Toby Mac last Sunday, and Chris Tomlin on Saturday.  I paced myself, and napped, so I could get through the night.  I was very careful about germ exposure (wore a mask in the crowd, wiped down my seat, etc etc).   I didn't stand during the concerts, or do lots of clapping, but I loved them both, and was so happy to be able to go.

On to Chemo #4 on Thursday.  Then I'm 2/3 done.  YAY!!!!!!

Random Thoughts #2

I have an obsession with red meat and waffles (not together - ewwww).  Realize I haven't mentioned that before, but I want to eat waffles every day, and red meat is always on my mind.  I've never been that big a red meat eater, so this is weird.  I'm just going ahead and eating what my body wants.  I can worry about the weight later....because there will be weight to worry about, for sure!! I'm just hungry all day, and eating something makes me feel better, almost as if I'll get a little queasy if I don't eat.


I have cramps in my calves several days after chemo each time.  Just realized the connection today.  Not bad, just makes me need to stretch them a bit.  Strange side effect.


No prednisone today - finished it yesterday for this round, and I'm happier already.

The fatigue hump was much much bigger this time around.  I felt energized and did a lot of stuff on Friday, but Saturday and Sunday were rough and I couldn't manage to do much of anything.  I went for Reiki on Saturday at the hospital (free!) and that was really much more lovely and relaxing than I'd anticipated (already scheduled for next round).  Sunday I went to church, and couldn't even stand for the hymns at all, and left as soon as church was over without saying a word to anyone.  VERY strange for me!


There's a strange thing around the whole baldness/hat/wig culture.  I've talked to a few people about it.  I wear a hat almost all day.  I take it off if I'm alone (or just with family) but I feel awkward in front of ANYONE (except Robbie) without something covering my head.  I still have a bit of fuzz on my head (in a funny combination of colors).  I'd expected to be shiny bald by now.  But regardless, I feel like I have to keep my head covered to protect other people from having to see the evidence of my experience.  I know what I'm going through.  But other people don't need the smack in the face of it, y'know?  I find myself feeling apologetic a lot about my baldness, my fatigue, etc.  Why do I feel the need to protect everyone else from my experience?  I'm not ordinarily that nice of a person.  HAHA  It's strange.  As it gets hotter out, and in the DR (when I'll still be just fuzzy), it's going to be hard to have a hat on ALL the time - HOT.  I am going to have to figure that out in a way that makes me feel comfortable...if that's possible.

I'm going to go eat waffles now.  I deserve them. 

HALFWAY THERE!!!

I had my third of six rounds of chemo yesterday.  Met with Dr. Scola first.   Had bloodwork.  I'm low on white count, low on neutrophils - all expected with the "extensive bone involvement."  Nancy (my sister) hates that he keeps repeating that, because it's depressing.  I sorta feel like it's good to hear it, because it means the RCHOP is worth it and my bones will be free of crap when it's over.

The day went smoothly and quickly.  8:45 finger prick (big ski mitten and handwarmer did the trick - no finger prick residual pain today - and it make people laugh, which is my goal in that place).  9:00 meeting with Dr. Scola (which means 9:20, which is early for him!!!).  We talked about my side effects (fatigue and stomach stuff like hunger and bloating - minimal).  We talked about my weight gain (Frank the port is making me eat much more than I'm used to...) - 6 pounds...so far.  He asked if I'm upset about it.  I said, "Fat and bald is the way it is for me."  He finds me funny.  You should remember that.  I'm funny.     We are scheduling a PET scan for two weeks from now, assuming insurance approves it.  If they don't, a CT scan.  I'd prefer the PET.  They're easy and I enjoy the music.  HAHA Seriously - it will show the bone changes better, but it is an easy scan, as scans go.

Then we went back to the waiting room, and when they called my name,  I did stand and say "YAY" although not as loudly as that one time.

I was lucky enough to have Val as my nurse again.  Same one from last time.  She's young and funny and irreverent, and was thrilled to hear that I'd continued to call the port "Frank," as it was her idea.   I told Nancy that I'm enjoying these little relationships that you develop with the staff there.  She said, "Well, that YOU do.  I wouldn't know anything about any of them."  You know, I'm normally an introvert.  The people reading this might be saying, "WHAT????"  But basically, as comfortable as I am with public speaking, performing, teaching, or whatever, what refills my tank is time alone.  Extroverts are rejuvenated by time with people.  So yes, I'm an introvert.   But I went into this process knowing I'd need to make it more uplifting than isolating.  So I'm writing a blog, and leaving it open to whoever wants to read it.  I'm not trying to hide the fact that I'm bald (hats over a wig - also easier because I don't have an office type of job).  I'll tell whoever asks.  (People don't ask - they avert their eyes.)  But when I'm in that infusion center, I am trying to make people laugh.  It's usually not hard (because I'm funny, remember?)  I've managed to make that kind of connection with two of the five chemo nurses I've had, and the phlebotomist and I can chat about stuff now.   Why not brighten a day in a place where things aren't all that bright sometimes?

Tim is visiting this week because "need to work from home because my mother needs someone for chemo this week."  Of course Nancy is here with me, but it works!  He came to the center and spent most of the time there with us watching me be silly in general, and dopey on Benadryl. And he got to see me get the red stuff I hate.

The infusion starts with premeds.  Tylenol, steroid, benadryl, fluids. That takes about an hour.  Then the Rituxan, which is now in a different form and is a shot into the belly.  The needle stick isn't fun, but the shot takes about 15 minutes, and Rituxan took 3.5 hours, so WELL worth it. There was redness in the area, and some soreness, but it went away within a few hours.  Then the red stuff.  Ick.  Orange ice cubes for 1/2 hours freezing the heck out of my mouth, but doing the job of warding off immediate mouth sores.  The red stuff takes 1/2 hour and is given directly by syringe into the port, so Val and I had lots of good chat time in there.  HAHAH   After that they do a quick syringe of the H in RCHOP (whatever that is) into the fluid line.  Then they hang the C bag and that takes an hour.  We ate lunch during the C bag and finished just about when it was finished. Out of there at 2ish.  Last chemo we were there 8:45-4:30.  This was so much better.  There are some pauses in the midst of things waiting for the meds, etc.  But it was all smooth and easy, given that they're shooting toxins in to your body.  I reread Nancy's blog from her breast cancer treatments 11 years ago and she said something like, "Then comes the Cytoxin (the C).  Why would they have "TOXIN" in the name of the drug that is curing you?"

Fatigue and some stomach bloating are my primary side effects - and not sleeping.  That's the stinking Prednisone.  Had a funny talk with Dr. Scola about that prednisone and everything it does to you.  He said he was on it for an inner ear thing and one day was on the phone with his wife and was just yelling at her, and it felt FANTASTIC!!!  HAHA  he's not the yelling type at all.  It was 'roid rage.   I hope she thought it was fantastic. ;)  He said he knew it was the prednisone and not him, but he didn't care.  My response is more hyperness and emotional swings.   I haven't yelled at anyone....yet!

To that's the long story made longer about my day of chemo.  Oh, and another foot massage!  YAY!!!

The next few days will be hard.  Then I'll have a few days of upswing.  Then I'll feel good for several days.  And then we're back at it April 4.  And then I'll be 2/3 finished!