Eeyore Days

It's just going to happen.  I will have some Eeyore days.  I'm an optimist.  Eeyore days aren't something I generally embrace.  But I'm determined to embrace them when they come, and allow myself the experience.

I'm a strong person.  I also cry at commercials.  Those two things can coexist (and do, in me).  But I generally don't wallow.   I'd say I've had a couple of mornings where I've just wallowed and cried.  At first I was trying to tell myself to get over it, and stay strong, and all of that crap.  Then I decided that I need to allow myself to feel every emotion that comes my way through this process.  Still...yesterday morning...when it hit me...I felt I needed to apologize to Michael for the tears.  He told me to stop apologizing (which was hard). 

Meanwhile, I am also working really hard at just accepting that I'm not as strong as I always have been.  I get tired.  I don't feel 100%.  I suspect you're thinking "No duh."  But it doesn't come easily to me.  So when I said that maybe Meghan and Robbie shouldn't come over tonight, I felt awful about it (and apologized).  Need to work on that, too!

(I have a sneaking suspicion that the prednisone is affecting my moods.  Both of my Eeyore days have come mid-prednisone.  I'm going to track this going forward, and then I'll have something to blame....other than the fact that I have cancer and am going through chemo.  LOL)

I'm embracing my dark side.  HAHAHA

33% of the way through it!!!!

YAY!!!!

Today went off without a hitch.  Full R-CHOP all in one day.  An 8 hour day, but it went smoothly, so I'll take it.

First you have to picture my entrance to the hospital.

I was told that in order to reduce the pain of the finger prick (I really do hate those) you should have really warm hands.  Great phlebotomist recommended a hand warmer.  I took it one step further (shocker!) and had a hand warmer and a big ski mitten of Michael's.  So that's my left hand.

Meanwhile, they had given me lidocaine cream to put over the port so that the needle going in would be less painful.  I remembered it last minute, and took the cream in the car with us.  I rubbed the cream in, and then remembered you're supposed to cover it with a bandage, plastic wrap, or something.  I had nothing like that.  But I did have an Applebee's to go cutlery set, wrapped in plastic.  Aha!  Tore it open, turned it inside out, and pressed it down on the cream and buttoned my shirt over it.

The phlebotomist was really impressed with the warmth of my finger (my hand was sweating) and said I'd be her best finger all day.  It really really made a difference.  PSA - use a hand warmer if you're going to the Doctor and know you'll have a finger prick.  A big mitten over that is preferable.  HAHA   The blood flowed like crazy, and no pain at all.

As for the lidocaine and cutlery packaging?  Didn't help at all.  It did make for some laughs with the nurse.  But not worth it.  It's like any other needle.  It hurts a bit.  But then it's over.  I noticed no difference with the lidocaine. Fail.

The nurse suggested I name the port to make it seem more friendly.  She said "Frank" several times, so that became my port's name.  Since I've named my gum grafts (George, Herbert and Martha), it seemed fitting.  So during the day she was talking about Frank.  At one point she disconnected the IV line and just the 6" line from the port was hanging out.  So I started pretending to whistle into it, talk into it, listen to Frank talking through it.  She was entertained.  Nancy is very patient with my craziness.  She's lived with it my whole life, so it stands to reason....

My meeting with the Dr. provided some interesting information.  He told us that my bone marrow had quite a bit of lymphoma in it.  So my first treatment saw a near disappearance of my neutrophils.  Neutrophils are white blood cells.  They comprise the majority of your white cells, and are leaders in your immune system.  The first treatment went after the bone marrow, as it was supposed to, and the result was the killing of my neutrophils, which was expected.  Puts me at risk for infection, for sure.  Now my neutrophils should start to recover.  But obviously my immune system could be more and more compromised as we go forward (why am I using the editorial "we" all the time?  I feel like everyone is doing it with me, I guess  LOL).  If I develop a fever of 100.5 or higher, they'll go to Neulasta (you've seen commercials for it, I bet) and antibiotics.  With any luck I'll avoid that by taking extra care to avoid exposure. 

Now I'm really tired but still oddly wired (thanks, Prednisone!) Michael and I are driving to Toronto tomorrow to celebrate Tim's 25 birthday this weekend.  We'll visit Hockey Hall of Fame and the guys are going to a Habs/Leafs game. Danielle and I will find something to do - like eat our way around Toronto.   Michael and I are also stopping at Niagara Falls tomorrow!!  Looking forward to it, and hoping my energy stays with me.

THIRTY THREE PERCENT!!!  I'm excited about that. Can you tell? 

GOODBYE HAIR!!

I'm just going to go on the record that I had the best possible experience having my hair buzzed.

But leading to that - today was hair buzzing day.  For two nights my scalp has been hurting.  I'd read that it can mean the hair is about to come out.  Today's the day it decided to do so.  Annoying.  I took a shower and it was just everywhere.  Time for it to go.

So this evening Uzias got out his buzzer and took it down to SHORT (and gray!!!).  I wasn't feeling emotional about it, but I know everyone else was.  But when it all started, Robinson found the buzzer to be hysterical.  And he just laughed and laughed throughout the whole thing.  And so we were all laughing.  How could you not?  I'll attach the video below.  And I have to say - I wish everyone had a Therapy Baby to get them through this step of the chemo journey.  But I'm not letting anyone borrow MY Therapy Baby.  HAHA

Then Meghan applied my first little temporary tattoo opposite my port.  And now I'm happy with that.

Everyone in the family has been feeling that this is the last shoe to drop - the hair loss.  But honestly - I'm feeling fine (thank GOD) and don't look at myself often, so it's harder on them.  Tim was honest enough to mention that he can tell himself everything's ok if he doesn't have a visual reminder.  The baldness is a visual reminder for all of them.  For me - I'm not very vain, and it was hurting and annoying me, so I'm happy to be rid of it.  I'm sure in June I'll be wishing it would hurry up and grow back.  But for now, I'm over it.

NEUTROPENIA

Neutropenia doesn't sound like something you want.  And I guess it's not.  It means that your neutrophils, a type of white blood cell, are low.  This puts you at a great risk for infections.

I went to see Kathy, the NP yesterday.  Did bloodwork and everything looks great, except I'm neutropenic.  Not unexpected.  Just puts me at risk.

I need to be very vigilant about avoiding infection.  That means lots of hand washing, and generally avoiding humanity.  For the most part, I avoid humanity in my day-to-day life anyway. LOL   Just me and Robbie hanging out together, and whatever germs we have, we're already sharing.  Now Meghan is extra careful about hand and face washing when she comes home.  Michael said it might not be worth washing his hands, so he'll just stay away.  HAHAHA

I've instituted a no hugs/kissing/touching rule at church already, so I'm ok there.

I have some disposable masks.  I'll use them when/if it seems necessary.

I have to take my temperature every day.  I've been doing that.  Never above 98.6.  But if it goes above 100.4, they take action, figuring I've contracted an infection.


Overall the NP was amazed at how healthy I am.  Everything looks and sounds good.  Very very few minor side effects of the chemo.  My constant hunger is a good thing - way better than loss of appetite.  My little bit of elevated heartrate (which is about 75-80... normal for some people) is an annoyance, but not a big deal (and Lynne was right that excessive hydration brings it down).

I asked if the side effects will come as I continue through treatments.  She said she doubts it.  The only one that will accumulate is the fatigue.  Fatigue I get.  Fatigue I can manage, I think.  But the idea that I won't be suddenly struggling with mouth sores/nausea/constipation/diarrhea/etc etc etc (the list is LONG) is really encouraging.   If the biggest thing this does to me is fatigue and baldness, I'LL TAKE IT!!!


No hair loss yet.  I yank on it every day.   HA

And my tattoos arrived yesterday - so prepare yourself for a picture or two or eight, as I start using them. 

Step 1 to bald....haircut

Thankful for Pat for coming over and making it all seem so nice and comfortable...and like it's a choice I was making for fun.  And for the honest talk about cancer treatment.   Hate to have friends who are going through it, but sometimes it's good to know you have someone you can say things to...

It's not drastic, but it's shorter and she really thinned it out.  When it starts thinning on its own, it won't be as much hair to lose.

BEFORE:

 Thanks, Pat!

AFTER:

Things that freak me out...

THE PORT:  The port site is really bothering me.  I feel like an alien is trying to come out of my chest.  It's finally healing, and the bruising is now mostly yellow, and I don't care at all about the scars, but the lump on my chest just freaks me out.

So I ordered a bunch of temporary tattoos.  I'm going to put them opposite the port.  No one will see them.  But I'll know they're there, and it'll make me feel more balanced.  I bought Mickey tattoos, scripture, some pretty crosses, and I think some Olaf tattoos.  They will only last a few days, but they'll make me feel better.  I'm a weirdo.  There was no denying that!


The Rituxan freak out day is behind me, so I'm feeling good about that.

THE HAIR:  I know it's coming.   I'm generally a calm person.  So "freak out" is probably not exactly the right term.  My mother would have been saying "PANIC!!"  I mean freak out more in the way that I keep thinking about it.

My sister has been whipping up hats.  She's a prolific crocheter.  I've bought hats (a cool Yankees one!).  It's a challenge, because my head is ginormous.  I bought a sun hat for the DR, and was so deflated when the XL size was still too small.  I'll keep trying.

I have plans to cut my hair shorter - just a stepping stone toward no hair.  Need to do that soon.

I know it's coming.  I pull on my hair (Nancy made me yank on it yesterday LOL) and it's still intact.  Another week and that'll change.  Even though I'm not at all vain, and never look at myself in the mirror, I know this will be a challenge for me.


OH, AND CHEMO:  There are toxic chemicals shooting through my body.  That can't be good, right? 

$53000

Just saw that charge on my patient portal site for the hospital on Rituxan fail day.  Now obviously that isn't the final negotiated rate.  But $53000.  That's pretty incredible.  Unbelievable.

Not to get into any political discussion, but that number just made my jaw drop.

Thank God for excellent insurance.  I pay.....nothing.

YAY - I WON!!!

I got through the Rituxan.

So now I'm officially at least 16% of the way through chemo.  (Depends on whether they decide on 5 or 6 treatments, in the end.)

Today was a crazy day, emotionally.  Medically it was more standard.

I had hyped myself up so much about getting through the Rituxan without any reaction, that when we got to the infusion center (which is a part of my doctor's office area), I was pretty anxiety ridden.   I got there and signed in and was told to get a finger prick to check blood levels.  So I did that and was then waiting to be called in for the infusion.  When the woman called my name, I actually stood up, raised my hands and said, "YAY!!!"  The 10-12 people in the waiting room got a good laugh about that.  Really...who is that excited about going into the infusion center?  The nurse tech/aide who called me in had a lot to say about my enthusiasm, suggesting I make the "YAY" my signature move every time they call me in. (My poor sister, being associated with me.  LOL)

Then "my" nurse for the day assessed me and said, "Did the Doctor suggest any Ativan or Xanax or anything for you?"   HAHA - a little revved up?

Once they get that big bag of Benadryl into you, the hype is gone.

Well, thankfully the whole thing worked out and I tolerated it without any problem.  And towards the end of the infusion, just when I really got antsy from sitting and everything...a massage therapist  came through and I got a nice foot massage.  Everyone else was saying "no" to her.  Crazy people!  I've never met a massage I didn't like.   Once they saw my foot massage, people started saying, "Yes."

So it's done.  The next infusion - the whole RCHOP this time - is Feb. 21.  Nancy will be back again for that, bless her.  Her steady restfulness is invaluable.

Got the CHOP part of RCHOP yesterday...

Had to make up for the fail on the Rituxan part on Wednesday.   Got to the hospital at 10:30, got started at 11:30, and was out of there by 3:00 with the 3 toxic chemo drugs in and no real issues.  For one, you have to suck on ice cubes the entire 25 minutes.  I was compliant, and grateful for good dentistry and not-so-bad cold sensitivity!  LOL  Thanks, Dr. Goodkin and Sandy, who took care of me in a rush on Tuesday so I'd be ready for this!!

Learned more about why they pulled the plug on me on Wednesday.  My first reaction was histamine - resolved with an anti-histamine (benadryl).  My second reaction was pre-anaphylaxis.    They think that with my body having been exposed, and with the next five days of prednisone to PUMP ME UP, I'll tolerate it just fine on Tuesday when they try again.

But wait - is Tuesday like ROUND 3 of chemo?  Wishful thinking!!!  Still trying to complete round 1.

Prednisone and exhaustion are a funny combo.  Poor Nancy sitting there with me all day.  I'm hyped up but tired, and can't stop talking.  When we got back to Meghan's house to pick up Nancy's car, and I had to drive my car the whole mile home, I told her I'd either drive 5 miles an hour or 100, depending on whether the Prednisone talked louder than the exhaustion.  I kept it to the speed limit, FYI.  No citizen's arrests necessary.

I have one real noticeable side effect at this time.  Dry mouth.  But I'm dutifully following all of the instructions with rinses and whatnot, and it's tolerable. And it makes me want to drink more, which is a very important thing to be doing.  Gotta flush that crap out of my system, and the cancer with it!!

And YAY for sleeping pills.  I slept 8 hours last night with 2 bathroom interruptions.  Best sleep I've had since the propofol induced sleep when I had the colonoscopy 2 weeks ago.  HAHAHA   For a long time - years -  I get 4-5 hours on a routine night.  So this was a GREAT night.  So I'm thankful for good pharmacology today.

My sweet boy is waking up, so our fun day is beginning.  I'm so happy to feel well enough to enjoy his company.  Praying it stays that way!!

Thank you to my chemo team, which gets longer every day.  The well wishes, the support, the help.  I'm making a list.  And at the end of my treatments, I'm going to list everyone, and you'll be AMAZED how long that list will be.  But I won't, because I'm feeling it daily!  Bless you!