Black Friday Update from the Couch

I’ve been home from MD Anderson for a few days and I’m pleased to report that the chemo effects are manageable. There are 14 medicine bottles on my kitchen counter, and they are managing... And I know it gets worse so there is no use complaining now....

That might be part of the problem – I’ve been through this once and I kind of remember how it goes... it might be better if I was innocent and naive. 4 day in-patient chemo is no joke - it’s like 4 times the chemo I had 7 years ago - all at once.


I have a picc line hanging out of my arm which is not only repugnant but makes showering difficult. So I’ve succumbed to daily baths at home and hair washing at the local Fantastic Sams. Shane did wash my hair in the laundry room once, but bless his heart it broke my back. So I’m gonna treat myself to the fanciest blowout $20 can buy! Right until all of my hair falls out.... tick tock tick tock.

My white blood count is low - dangerously low one might say, so that means if you touch me I’d appreciate you bathing in hand sanitizer first. So relieved Avery tested negative for strep and the flu this week. I was about to get shipped to Saigon. And my adorable husband (the one who moonlights as a hair washer) sprained his ankle. We are testing the limits of our health insurance this week!

Morgan had a huge cheering section for her soccer game this week. The Dutchtown High School JV team is on fire! And we had a relaxed Thanksgiving day at my mom’s house who managed all the cooking and hosting after moving into her house on Monday. A woman who loves a challenge....

It’s ironic that 8 years ago today we got the call that I had Lymphoma (on Black Friday). I guess history does repeat itself, but please, let this be the last chapter of this story!

And we have a plan!

MDA called yesterday.  They weren't able to test the material from the lymph node biopsy, but the cancer is in my bone marrow so they were able to test that.  Cancer being present in the bone marrow wasn't exactly ideal and it lessens my chance of being able to use my own stem cells, but still I have a chance.  It's 50/50 whether I'll need a donor or can use my own.  They won't know until the three rounds of chemo are done.  They have to see if the chemo kills the cancer in the bone marrow - never a good idea to harvest sick stem cells and stick them back in.... The best news is the same cancer I had in 2011 is back.  That's great because it's curable - apparently it can return but it's "curable" each time.  Now let's get this straight, I prefer that this doesn't become a "thing".  I don't want to personally test HOW MANY times a person can survive Diffuse large B-cell lymphoma.  Is someone listening?????

For people who have done this before (and I hope you haven't), in 2011 I had R-CHOP chemo.  This time I'll have R-ICE chemo.  R-CHOP was an outpatient situation (go to the doctor's office and sit in a chair for 8 hours and then go home).  Since EVERYTHING IS BIGGER IN TEXAS, R-ICE requires me to be inpatient.  So here's house it goes:

Monday - drive to Houston and TRY and sleep through the nerves

Tuesday - see the doctor in the morning, get admitted to hospital and start the chemo drip

Wednesday, Thursday and Friday - watch chemo drip painfully slow through the IV.  Play pin the tail on the donkey, Sudoku and lots of UNO.  Catch up on trashy BRAVO TV (lord I hope MDA has BRAVO) and try to read an inspirational book (this is for looks).  This first time I plan to address my Christmas cards, but cancer makes my handwriting really wonky (as evidenced by 2010 time when my sister Jen grabbed then from my hands and refused to let me write them).   But I have three days, I'm going to go slowly - but feel free to laugh at the old lady wobbly handwriting when the card arrives...  You're welcome.

Saturday - discharge and maybe drive home?  But if I feel terrible we can stay in the apartment and drive home on Sunday.  PS - This time Shane will be with me Monday - Wednesday and my sister Ashley will take over from Wed to Saturday.

Now if you are reading this and laughing at me bc you REALLY know how this whole thing is going down - PLEASE LET ME KNOW.  I've asked a ton of questions but they could be giving me the rainbow and unicorn version.

I will be at MDA for chemo from Nov 13 - 18, Dec 4 - 9 (birthday party at the MDA - whoop whoop) and Dec 26 - 30.  Here's the GREAT news - I will be home for Thanksgiving, Avery's bday, Shane's bday, all the Christmas family parties and Christmas morning.  If I had to pick a perfect schedule this would be it!

Now once these chemos are over I move from the Lymphoma doctor to the Stem Cell doctor and that process starts. That one isn't nearly as accommodating bc it includes 6-7 weeks where I'll be in Houston.  Clearly cancer doesn't care that I will completely miss Mardi Gras 2018.

I can't wait to start gathering the true story of  MDA in-patient stay.  It's going to be a list of "what not to do" bc I'm sure to break all the rules.

A few people have asked about a meal train.  I don't cook, so when people I know need food they get a Costco rotisserie chicken and the Costco Mac-n-cheese.  But for those of you that enjoy cooking (insert eye roll) feel free to sign up on this site.  Ashley will open up more dates now that we have an idea of what's going on.  My family prefers filet mignon and shrimp kabobs ;)
https://mealtrain.com/wo5y0e

Jim Gaffigan was hilarious and I'll be sure to download and watch every one of his specials next week.  I hope that there is a lot of laughter coming out of my room!

Choose your seat wisely...

Or you could be sitting next to the 24 Hour Urine Collection bottles like Shane.  Who really does have the patience of a Saint because I make him do some pretty shady stuff...

So a recap of the week:

Shane and I arrive in Houston and the Astros win the World Series.  Coincidence?  I think not.

Whoever marketed these candles is a genius and I don't think it was the Catholic Church.

MDA is like a medical city that never sleeps.  What takes 2 weeks anywhere else gets done in 2 days.

I ate the whole bag of LWDs.  If confused, please see my previous blog post.

The discomfort in my hip from the bone marrow biopsy is only surpassed by the discomfort in my neck from the lymph node biopsy.

MDA does not perform neck lifts with neck biopsies.  I'm working on this...

The bone marrow biopsy will tell us if I can use my own stem cells for the transplant or if I need a donor.  That whole repaying someone who saves your life with their stem cells thing is overwhelming, so let's pray I can use my own.

There is a chance the lymph node biopsy wasn't successful and I have to go back for a spleen biopsy.  Seeing that your spleen is filled with blood it seems a little nuts to try and "nick it".  But we'll see...

A team of moms helped save Halloween.  To them I'll be forever grateful.

We met an amazing family who handed us the key to their garage apartment and said "stay as long as you need".  This invitation comes with a keg of Bombshell Blonde in the backyard.  We have found our soulmates.

My sister and my mom are heroes of the week.  Pray that my mom recovers from the 5am alarm clock before we leave again and Ashley was at our beck and call all week.  I hope she never has to overnight us a pet scan disk again!

Currently the treatment plan looks like 3 rounds of 3 day inpatient chemos spaced 21 days apart.  The transplant process will take place after chemo and spans 7 weeks (all of which I need to be in Houston) and includes a ton of crap that sounds horrible.  So I forgot most of it.  This will be confirmed after the pathology reports are back from the biopsies.

But we made it home for the comedian Jim Gaffigan.  So the laughs will keep rolling...