AMA

So I learned a new term this week....Against Medical Advice (AMA)... has a nice ring to it, doesn't it?

I've been at MD Anderson for 19 days.  My stem cells were harvested and frozen and await insertion.

Here's a little summary of what led me to leave MD Anderson AMA on Friday.

First, I made the mistake of reading that Sally Ann Roberts collected enough stem cells for her sister Robin Roberts in two sessions - so naturally I thought they would harvest the required 5 million cells in 2 sessions.  I was so very wrong.  I also harvested during the snow days and the MLK holiday in Houston which added to the cluster.

I'm a CPA, so naturally I was keeping track of my stem cell collection.

First day - 1.23 million
Second day - 1.33 million
Third day - 860K cells (MLK Day)
Fourth day - 550K cells
Fifth day - 330K cells
Sixth day - 680K cells  (at this point I had collected 4.98 million cells)
Seventh day - no idea, because I went left AMA (Friday)

After the third or fourth day of collection I should have started receiving a "boost" shot at night to increase collection the next morning, but because of the weather most of the clinics were closed early and the doctors didn't pull the trigger on the boost shot.  I finally started receiving the boost shot before the sixth and seventh collection.  When I got the call that I hadn't collected enough cells on the sixth day I was very confused.  My total showed 4.98 million which was pretty darn close to the 5 million goal.  And I questioned the nurse, you might say I grilled the nurse, but I was told my numbers were wrong and I needed to collect on the 7th day.

When I showed up to collect on the 7th day I went to battle over these numbers.  And what I finally learned was that each patient's collection is tallied on a simple piece of white paper in a binder (don't get me started on this method).  As I reviewed this very scientific collection poor excuse for a tally I noticed that my collection on MLK day was missing (860K cells), so I really didn't need to collect on the 7th day.  I was relieved until the nurse says, "Well, you got the $12K boost shot last night so we might as well collect".  Twelve thousand dollars wasted!  And no, I don't know what part of that $12K I will eventually have to pay.

I dug the Xanax out of my bag and calmed down during the 4 hour collection and started to casually ask WHY it was necessary to return the next day.  "Blood work", they said.  "It's part of our process", they said.

That was the point that I decided "my process" was to pack the car on Friday and head home.  Forget that Saturday morning blood work.   Better to beg for forgiveness than ask for permission... how's that for my "process"?

So I got to see Morgan play in her final JV Soccer game.  I sampled 5 different king cakes, ate a shrimp po-boy and I pretended that life was normal for a few days.

After a few days of testing I'll head into the hospital for a month for 8 days of chemo and the stem cell insertion.  I printed 16x20 and 8x10 pictures to plaster all over the walls of the hospital room.  I'm as mentally ready as I can be.  Once the hospital stay is over I have two final weeks in Houston and then I should be home on the road to recuperation.  I'm making lists of all of the amazing things we are going to do once I'm healthy again and the lists include plenty of laughs.  Hope you can join us in some of those laughs...

Insurance, or as I like to call it.... HELL

So I'm headed to Houston today with three sets of bags packed - an overnight stay, a four day chemo stay, and a two month stem cell transplant stay.  Frustrating, right?  You have no idea the level of frustration I have right now....

So here are the possible situations:

1. Have 3 tests tomorrow that are required for the stem cell insurance approval and come home while we wait for said approval (side note: I did have a small breakdown during our last visit when I had to sign the financial paperwork agreeing to the $680K down payment if insurance doesn't come through)

2. Have those tests but also stay for the 4 day in patient chemo (looking most likely as of 2:15pm)

3. Do the above two and if insurance approval comes by Friday then I stay after chemo and start the harvesting process on Tuesday

Remember I'm not like a crazy control freak, but one day versus two months makes a big difference in packing - not to mention my sanity.  So for all the people who have reached out today, please know I'm hanging on by a thread (and apparently I haven't taken enough Xanax to feel Zen).

And there is a second insurance issue - AFLAC has denied my short term disability claim.  AFLAC prides themselves in making a decision in 4 days (as stated on numerous letters), yet after almost two months of paperwork I have been denied.  I know it's still a paperwork issue, but it isn't helping my Zen state.

Since everyone is on the edge of their seats with anticipation I'll be sure to spread the news as soon as I find out how long I'll be at MDA this time.  Thank you for all of the texts, messages and prayers.

And while I'm not laughing at this very moment, I will experience my sister Jen's first Bucc-ee's experience on this trip which I expect will create tons of laughs!

The weekly wrap-up

So remember the past two years when I sat in my glass house and worked with a functional medicine doctor (even being featured in one of her print ads) and gave up carbs and caffeine and limited my alcohol all in the name of good gut health and preventing cancer recurrence???  Guess what I have to say to that little bitch health conscious self who said  "oh, I'll never binge on carbs if I ever have chemo/cancer again"???  I say that the egg salad that I made this morning (without relish which I normally like) along with saltines was fine at 10:30am.  But at 2 it was nightmare so I switched to M&M's (regular and caramel) with a side of cheese and very salty crackers.  In fact, the saltier the better.  Because everything tastes like cardboard and at least I can taste the salt.

I've been home from chemo #2 for 2 days and I feel the best when I'm in a recliner being very still and watching BRAVO.  I classed it up a little today with Season 2 of The Crown on Netflix.  This feeling of uselessness sucks, but in all honestly I did put away two dishes yesterday and I did a load of laundry today, so I'd say I'm #winning.

Chemo #2 was terrible - not to sugar coat it.  It was the nausea, and then the panic over the nausea and then obsessing over if I should I get up and try to throw up over the nausea...  You can see how this can spiral out of hand very quickly.  I think next time I will be a little better prepared.  Forget the laptop, I'm bringing an ice chest to provide a constant stream of carbs and protein - because I'm telling you, wait one minute too long to eat and the whole world is ending.  And I am going to need Xanax on regular intervals because it was clear from the blood pressure readings that once the nausea got too bad, I just panicked wondering how long I could survive which made my blood pressure spike and the walls cave in.  I'm sure people without some kind of anxiety disorder in their background have literally NO IDEA what I am talking about - so I'm talking to those of you that do...

I was extremely lucky to make it home for my birthday.  In the South "sneaux" is what we call it - you know with the cute "eaux" on the end because WE NEVER ACTUALLY SEE IT!  But it actually snowed on my birthday in Baton Rouge.  I was expecting it all to have melted by the time I got home at 7pm, but nope!  It held on and it was beautiful!

Chemo #1 and #2 have allowed me to compile a list of attributes in a caregiver:

#1 SILENCE - because I choose to sleep as much as possible, we can chat later over lunch... in a restaurant... when I have hair.....
#2 No eating in the room - Even when the food was delivered to the room next door I could smell it via the air vents and I almost lost my shit mind.
#3 No sudden movements - Just because I'm going into the bathroom to dry heave doesn't mean I need you holding my proverbial hair back.  I will be sure to call you when and if I need you.  By the way - NO ONE needs help vomiting!  It's just gross and a solo event.

I'll leave you with a few pictures of the snow - because snow in South LA makes everything better (for a day.... longer than that and we are just cranky and cold).

And yes, Morgan is the nutball in shorts!  Add hypothermia to our list of health concerns... Whatever you do, keep laughing!

What I call "Dread Day"

So we are heading out for Chemo #2 today.  This week I became keenly aware of how it feels when I need a blood transfusion and spent a day and a half at the hospital getting three bags of blood and two bags of platelets.  I applaud every blood donor, and I know that we all can't give  (hell, they won't take my blood), but when my head has been pounding with a migraine for 3 days and all I can hear is my own pulse in my ears I am completely grateful for blood donors.

We celebrated Avery's 13th birthday this week with no less than 3 events and sadly, one of my presents to her was a shaved head - mother of the year award right?  At least I sent both girls a text before they got home from school with a warning - that counts right?

I could only take two days of  tumbleweeds of hair in the house before I called it quits.  It was a cute "#2 with clippers” on Thursday and Friday for Avery's birthday and Shane's work party, but as of today we are down to "patchiness bordering on baldness" - and yet you know what hanging on?  The GREY!  My nephew and brother-in-law got a matching "#2" this week.

We will see the doctor tomorrow and be admitted to the hospital when a bed is ready.  Last time I was discharged at 10:30pm and I guarantee as soon as the room was cleaned they moved someone new in.  Remember MDA never sleeps...  Shane will head home on Wednesday and a friend will take his place to get me home on Friday or Saturday.

We are super excited for Dutchtown High School's first soccer game at home.  Soccer uses another field until football is over, but Thursday they play at the DHS stadium.  I can't wait for the tons of updates Shane sends me throughout the game.

I'm armed with plenty of pralines from a sweet friend for the doctors and nurses this week.  I find the happier they are, the more "good drugs" I get!  Hope your week is filled with laughter!

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...