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Thursday, November 9, 2017

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!

Friday, November 3, 2017

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... 




Monday, October 30, 2017

It's bigger in Texas

Shane and I arrived at the mega Houston medical complex. It’s as overwhelming as I expected.  I literally saw an “Entrance 35”.  Are you kidding me???  Our appointment is at 9:30 tomorrow morning and I’m so anxious I might have to sample a few of those medicine bottles tonight.

Leaving the house today was way more emotional than I thought it would be.  It’s hard to believe I had time to shed a tear with the 14,000 notes I left for the girls and my mom.  Avery texted me when she got home “you labeled everything in the fridge??”  Well, yeah....

During the teary eyed packing (where I did stop to dust the interior of my car), my mom snuck in a care package complete with LWDs (that’s little white donuts for those of you that didn’t grow up in the Hirschfeld house).  So far I have resisted but the night is young.

According to Shane (and apparently most men in the South) my life was not complete without a visit to Buc-ee’s.  Well call my life complete because I have experienced the mega “gas station” Buc-ee’s along with the Beaver mascot.  From the meat counter, the jerky counter, the shelves of pickled EVERYTHING, the home decor area which included a COW section, the blinged out belts in the apparel section, the boudin kolache in the bakery section to the ONE healthy item - the vegetable cup (no one was buying those).... I have seen it all!




My mom has everything under control at the house so far.  She has 14,000 notes... what could possibly go wrong?  I’ll update again as soon as possible.  We expect the next few days to be a blur,  but we’ll find some reasons to laugh!

Tuesday, October 17, 2017

Halloween isn't just for candy

It's also for visits to MD Anderson.  After a few hiccups I am set up to see Dr. Yasuhiro Oki at MDA on October 31.  Can you believe my care manager said his first name is spelled exactly like it sounds?  Wait, what?? 

I'm actually relieved that we have a little time because I have a list a mile long to get done before this circus starts.  Like filing for our Homestead Exemption - that sounds like a blast.  I'm sure my car needed an oil change and tire rotation 5,000 miles ago.  And without a doubt someone is overdue for the dentist or the eye doctor.

I've shared the news with my RPCC students, my clients and the Facebook world and the support has been heartwarming.  So many people offering to do "anything".  Really??  Because no one has offered to the clean toilets yet, so answer with caution if I call.  I did have an offer to clean out the fridge and I'm seriously considering that one.

On another note, my mom has been "researching" medical marijuana.  I'm not sure if this is for my benefit or hers... but I'm pretty sure someone ends up laughing.

And as much as I'd like to get to MDA I was so happy to be able to see Avery and the Dutchtown Middle Volleyball team finish the season today as Co-Parish Champs.  Congrats to the team and a very pregnant coach!




Saturday, October 14, 2017

The Resurrection

Yes, I went to Catholic school for 12 years, but not THAT Resurrection...

It seems like time to resurrect the blog.  And not because you like to read the about the mundane drivel that is my life, but because the cancer is back.  I always knew it would come back, but I thought I would be elderly and I'd just let Shane give me the same pink juice you give to dogs and I'd drift off the sleep.

At 42 I guess I can't opt for the pink juice yet, so I'm gearing up for the fight.  We have told the girls.  I think they've seen me sick so many times they are a little immune.  The word cancer doesn't even scare them anymore  - at least it appears this way, but as the mom I constantly worry that they ARE more affected than they appear and that's the part that makes me cry a little.  I only allow myself to break down for a few minutes every 5 hours or so, but I've got to get a handle on that because I'm getting pretty dehydrated and the concealer stopped working today.

So in 2011 the lymphoma was in my liver, spleen and lymph nodes. This time it's definitely in my lymph nodes, my spleen looks horrendous and here's the bonus - my bone marrow is lit up like a Christmas tree.  A visual is always super fun so here goes.  Note, the top pics are from 2013.  Those dark parts are my brain, heart, kidneys and bladder.  Those are supposed to be dark.  Did you notice how much darker the bottom pics are?  That's not good (as explained by an accountant).  I really thought I was going to get the call that this was all a mistake, but I can't deny those pictures, dammit.



I had the PET scan on Wednesday at 7 am and here's a PSA - it's NEVER good when your Oncologist calls your cell from his cell at 2pm in the afternoon.  It just isn't - you can trust me.  

The good news is that Dr. Spell says it's treatable.  The less good news is that it's treatable in Houston at MD Anderson.  Baton Rouge doesn't have the capability to do a bone marrow transplant and that's on the horizon.  MDA got my records on Thursday, so we are just waiting on a call to see when we head over.  MDA is the wild card for me.  It seems so big and overwhelming.... and far...

For now we just do normal life - 2 soccer games for Morgan, LSU volleyball and a volleyball clinic for Avery, get Morgan and friends to the movies and get Avery to a birthday party - sprinkled with a trip to Costco, 4 loads of laundry and I'm really hoping the Magnolia collection is out at Target.  So if you are wondering what we might need in the next few months it will definitely be an Uber!!

We are still laughing though.  I laughed at myself in Jazzercise this morning when I made up my own routine - I call it a solo.  We laughed a ton at lunch, but since both of my daughters can read and find my blog this time I can't recount those details.  We aren't going to stop laughing and that's all I know for sure.

Heather

Monday, December 7, 2015

Dance 10... Looks 3

Sunday I took the girls to the Baton Rouge Symphony Orchestra for the Home for the Holidays performance.  Maestro Muffitt is a blast.  He entertains and educates the audience with a wonderful sense of humor (“I love all of the festive outfits today.  For everyone wearing those adorable reindeer ears, just remember it’s hunting season….”)

We were treated to an amazing original arrangement of The First Noel by David Lindenfeld.  Mr. Lindenfeld is a member of the Baton Rouge Symphony Chorus and he was singing on the stage during his rendition.  It was really cool….

The performance included Gospel pieces by Greater Baton Rouge Interfaith Ensemble, hand bell music by the Red Stick Ringers and singing from the Sherwood Middle Magnet school choir.  They really incorporated so many people from the community.

Still with me??  I’m getting to the point because clearly I'm not trying to take Keith Spera’s job…

When Quiana Lynell started singing Oh Holy Night it hit me...  If I hadn’t made it through the last few years, M&A would not only never brush their teeth and hair, but they would also be tomboys (there was probably a double negative in there and my sister jen will call me)...

If Shane was raising the girls alone they would be expert BB gun marksmen, proficient bow hunters, excellent fisherman, and well trained athletes.  And although all of those things are fantastic (and by fantastic I mean horrifying....), I realized today that come hell or high water my girls will be exposed to the arts.


I can’t be the only mom who feels like her sole job is to remind them of personal hygiene and homework.  And even though Avery tapped her imaginary watch during the performance (only once) and she rated it a 4.5 on a scale of 1 to 10 after the show – I will not be deterred.  Morgan gave it a 10, so there is hope (I'm blocking out that she's more of the people pleaser and she remembers Christmas is around the corner)…


You know what else we did?  Laugh!  We laughed because "Mommy" took a selfie, we laughed at Maestro's floppy hair and we laughed at the little boy who clapped long after everyone else.  It may have been a 4.5 for Avery, but it was a 10 for me....

Keep on laughing....


Friday, November 27, 2015

5 years ago today....

We found out that I had Stage 4 Non-Hodgkin's Lymphoma.  Stage 4 is only bad if you realize that Stage 5 is death...We didn't exactly dwell on Stage 5.

There was no time for worrying or crying that day because we had a birthday girl - a fabulous 6th birthday party - complete with Build-A-Bear, Sushi, a fashion show, custom flip-flops AND a sleepover...  Murphy's Law, right?



But that was probably the perfect day to get the news, because it set the pace for the next few years... It reminded us to roll with the punches- because quite frankly there were WAY too many punches - chemo, baldness, 2 blood transfusions, meningitis, a seizure that caused temporary blindness and months of reduced brain activity, erythema nodosum (go ahead and google that) and physical therapy... How the hell did we survive??

We survived with the help of good friends and family, gallons of tears and plenty of laughter.  Oh - trust me -  I screamed and cried when I was home alone, but we found plenty of reasons to laugh together.  Ashley and I laughed when we bought my wig.  I laughed when the girls paraded around in my wigs and hats.  Shane and I laughed when I laid on the cold tile floor to relieve the pain.  I laughed when Shane had to suit up like a Ghostbuster to enter my isolation room in the hospital.

I survive today because I packed up the bad memories and put them in a box on the shelf.  If I think about that time, I only focus on the good memories.  Why dwell on the bad?  People joke that women forget how bad pregnancy and childbirth is - otherwise everyone would be an only child.  It's the same kind of thing...

That time taught me many important life lessons.  They aren't always easy to follow, but I remind myself that the lessons were the gift of the disease.  That allows me to laugh about it - and keep laughing...

Heather