Yesterday I received my bone marrow transplant.  I don’t want to say it was uneventful, because, well that’s the reason we’re all here.  But it was pretty uneventful, which is good.  I got a big bag of Nancy’s blood and marrow transfused into me over a 3 hour period along with lots of fluid.  I didn’t have any big reactions.  I was mostly just very tired (that’s the theme around here these days).  It was exactly the experience were hoping for and Nan’s marrow was absolutely perfect.  My nurse described the transaction as if the chemo and ATG were making holes and space inside my bone marrow, and yesterday Nan’s marrow cells were going to make their way into those spaces, make it their new home, and start growing new blood products.  Now we just have to wait 11-21 days for that last part to start happening.  Ugh.

I don’t think I have yet to describe how the days are tracked in the transplant world.  Yesterday, transplant day, was Day 0.  All the days leading up to that day were negatives, Day -1, Day -2 and so on; I was admitted on Day -6.  That makes today, Day +1 (99 days until this blog self-destructs!).  So even though I have been in the hospital for 8 days now, I’m only on Day 1.  It’s like time travel!  Just not in a good way.

So, what’s been going on the last couple of days?  Welp, as you know I had some serious reactions to the ATG, which is both quite common and thoroughly unpleasant.  This happened again the day before the transplant which was supposed to be my “rest day”.  Not quite.  I had pretty much the same reactions I described in my “ATG-Chemo Cocktail – Shaken not Stirred” post, minus the nausea, thank God.  This was made more frustrating by the fact that this hospital really wants to protect my liver (apparently more than I do) and therefore will not give me Tylenol on demand.  I mean you’d think I was asking for heroin or bath salts the way they react to my request for some simple Tylenol.  No, first my fever must get to a particularly awful range until they will even consider giving it to me.  The chemo is apparently already doing a number on my liver, so they don’t want to do any more damage by giving me Tylenol without a serious reason.  They also don’t want to mask the fever so that they know where it is coming from.  I DON’T BLOODY CARE WHERE IT’S COMING FROM, GIVE ME THE DAMN DRUGS!  No.  This was the conversation that happened several times between me and my poor nurse who happened to have me on 2 of my bad nights (I’m sure she has since requested to be moved elsewhere on the floor).  Anyway, I spoke to my sister Nancy and she said this is standard protocol at any hospital, and I basically just need to deal with it.  Nancy’s word = law.  Luckily, I have not had another fever since the night before the transplant.

Aside from all that loveliness, I’ve had a rash/hives on my legs and arms for the last several days that won’t go away.  It’s really attractive looking.  My feet also feel like they are on fire all of a sudden, so that’s fun.  They just switched up my antibiotics a few minutes ago to try and help with both of these things, I hope it works.  Also, all of the fluid they gave me with the transfusion built up a bit causing me to be short of breath last night.  I got Lasix again and oxygen overnight which helped a lot.  I’m back to breathing normally today.

In other news, my knight-in-shining-armor of a husband just hooked up our Amazon Firestick to the hospital TV, so I can watch all sorts of stuff without having to balance my brand new iPad (I love it, thank you Allen & Company!) on my belly when I’m trying to fall asleep.  The things this man has done for me in the past week, I can’t even describe.  Yet.

“There are good days and there are bad days and this was one of them.”

Hi everyone,

After 2 great days I had a rough one again today. 103 fever, chills, hives, headache;you name it (except nausea thankfully). Feeling a bit better now though.

Nancy’s procedure went beautifully and she and Dave were just visiting with me in my room. She’s a little sore but doing great. The doctors said her bone marrow is the absolute best it could possibly be.

Jenn and Sully were with me all day and I don’t know what I would have done without them. Thank you all for texts, messages, emails, calls, comments. Each one makes me feel loved and gives me strength.

Day Zero

My transplant is scheduled for 11:00AM tomorrow. I am looking forward to a new day and  will update more tomorrow.

Tomorrow morning my sister Nancy will be coming to Sloan Kettering for the procedure to harvest her bone marrow, for my transplant.  The procedure will take 1-2 hours under general anesthesia.  She will be tired and sore for a few days, and I pray that it won’t be too bad.  There will be 2 doctors, one on each side of the back of her hip bones.  They will go in with a hollow needle and pull out blood and bone marrow (50 small holes on each side).  Nan donated a pint of her own blood 2 weeks ago, so that she can receive it back during her procedure. 

Let me tell you a little about my little big sister (I call her that because I am taller than she is).

Nancy is a nurse.  When you meet her you will understand why.  She is one of the most giving, selfless people on this Earth.  She will move Heaven and Hell to help you the best that she can.  She will stay late at night after her shift is over to make sure her patients are taken care of and her work has been properly documented.  She will comfort you with her soothing voice and disarming laugh.  She will hold your hand until you feel better, and you will feel better just by her being there.

Although I have never been one of her patients, I know all of this to be true.  Last year was a trying year for the Walsh family (2 trying years in a row, can we catch a break here!?).  My dad had multiple surgeries on his spine which kept him at the hospital for 6 weeks.  Not only was Nancy the family spokesperson and liaison with the medical staff, she actually saved my dad’s life by demanding he be scanned for blood clots. The doctors said the test was not warranted but she would not back down.  Low and behold, he had several large blood clots in his legs.  He was immediately scheduled for an emergency procedure the next morning to have filters put in his Vena Cava to prevent the clots from going to his heart, lungs, or brain.  We don’t want to ever think about what could have happened if Nancy didn’t insist on that procedure.

In addition to that, 2 of my other sisters had knee surgeries, and a hernia surgery last year (which Nancy insisted she go to the ER for which resulted in emergency surgery).  Nancy again was head nurse of the Walsh medical team, as she always is, advising on medication, the best protocols, best ways to communicate with the medical staff, and just general comfort.

Not only did she take care of her entire family, she had to take care of herself after an extensive and highly complicated surgery to treat her longtime battle with endometriosis.  Nancy suffered through the pain of endometriosis her entire life.  But it finally came to a head last July when she had trouble just doing day to day activities.  It was discovered that the endometriosis had taken over and was strangling some of her vital organs, namely her bladder and a vital artery.  She endured a 9 hour surgery with multiple specialists including the top endometriosis doctor in the world; he said it was the worst case he had ever seen.  When Kath and I went to see her in the recovery room after the surgery, the first thing out of her mouth was “How are you guys?  Are you ok?”  Seriously?  You were just in surgery for 9 hours, WE’RE FINE!  But that’s Nancy, always thinking about others before herself.  Thankfully she was recently given a clean bill of health and is free of endometriosis for the first time in her life.

When we found out she was my 100% perfect match (I called her and told she had won the Golden Ticket!), Nancy promised she would do anything for me.  I was scared because she was still recovering from her own surgery, I was afraid it she might be too fragile to go through another procedure less than a year after hers.  But she assured me she would do whatever it takes to save my life.  And that is exactly what she is doing; literally saving me so that I can go on to lead a happy healthy life with Sully and the rest of our friends and family, and God willing, our children.  The risks of complications from the procedure are small, and she should heal quickly, but the risks are still there, and she will be literally laying down and telling the doctors to take whatever they need from her and give it to me so that I can live.  She is a special, special person; a real life angel walking amongst us, I kid you not.  This is my sister Nancy, chosen to save me and doing so without hesitation.  I love you Nan.

Side note: when Sully first met Nancy he thought she was the sweetest, nicest person he’d ever met. (Two adjectives that neither he nor I would ever use to describe myself, by the way).  The words he said after meeting Nancy went something like this: “I wish we could take a little of her niceness and inject it into you”.  Well babe, you are getting your wish!  Let’s hope you like the new and improved Nice MaryKate!