Sunday, August 24, 2014

26 Days

Tomorrow morning, on my 26th day as an inpatient on the Bone Marrow Transplant Unit at Roswell Park Cancer Institute, I will be discharged!!!  It's 99% certain which is as close to 100% you'll ever get from a doctor.

Thank you, thank you for your prayers and support.  This process is not over for me, but this is a huge and welcome obstacle cleared.

Please pray that I will never be admitted here again.  Please pray that I can leave this behind and raise my babies with the love of my life and tap dance into old age with him.

Please pray for my husband and kids.  I'm still not going home...I'll be at my Mom and Dad's for 2 weeks.  These 2 weeks are critical in ensuring that I don't end up readmitted.  This is the best decision, but it is a very difficult one.  We'll be able to see each other as much as we want, but they just want Mommy home.  Mommy just wants Mommy home too.

Pray for my Dad who will be in charge of my care and supervision for the next 2 weeks.  If anyone can snap this patient into shape it's him.  He's going to be in charge of my meds, making sure I'm exercising, monitoring my symptoms, and taking me to my appointments.  He's also going to be in charge of getting me to gain back the 10 pounds I've lost.

Please offer a prayer of thanksgiving for my husband who was nothing short of heroic during this time, for my Mom and Dad, for my In-Laws, for many dear friends and loved ones who supported us with prayers and meals and rides to swim lessons.

Please offer a prayer of thanksgiving for the Doctors, Nurses, Health Care Aides, Nurse Practitioners, and everyone who cares for the transplant patients on 5 East at Roswell Park Cancer Institute with great compassion and skill.

Thursday, August 21, 2014

Day +13: Sometimes You Just Cry

*The management makes no promises for coherence, grammar, or punctuation.

I'm kind of a crier.  I cry a lot.  Happy, sad, mad, relieved, undecided....cry, cry, cry, cry, cry.  I cry enough over random stuff that now if my 10 year old son finds me crying about something and I start to tell him not to worry he kind of rolls his eyes and says "I know, Mom, sometime ladies just cry."

In the car, when there is ANY country music playing except Luke Bryan, if I see a really great bird, almost EVERY time I see my husband,  if I think one year--sometimes one month ahead in my children's lives.....etc.

I try really hard at the hospital to not cry at all.  I try very hard to be super special patient that causes zero trouble.  I say thank you for every pill, every IV pump reset and I say sorry for every single gross thing such as puking.  I apologize between pukes as though they'd assume it's my hobby and I just decided to fit in some recreational puking right now and I regret I've inconvenienced them with my poor timing. I need them to know I did not want to cause puke for them to handle.  I wish I had a stack of $5 bills on my tray to hand out every time I have to push the call button.  I HATE pushing the call button. I basically only push the call button when my IV is beeping because I know if I let it go they'll say "why'd you do that".  Anyway, I try to be sunshiney patient in their day and yesterday I was an epic fail.

Yesterday was day +12, or 12 days since my transplant.  I cried all day yesterday.  All. day. long.  Did I get some bad news?  Nope. Great news.  Yesterday was the day my Absolute Neutrophil Count was almost where it needed to be for us to tentatively maybe discuss, barring any unforeseen bumps in the road, the possibility of me being discharged at some point.  Possibly.  (It's hard for doctors to commit to anything). Today the news was even better.  My Absolute Neutrophil count needed to be greater than 1.5 and it's 1.76.  They're giving me one more growth factor shot to keep things jumping up and hopefully  after today I'll get a break from them.  They make me very achy.  I might even get unhooked from my IV's tomorrow.  It's awesome.  I might even go home sometime next week.

But I spent all day yesterday just crying and crying.  I just want to go home.  I just want to walk around with out dragging an IV pole everywhere I go.  I want to see my kids.  They've visited once and I was so happy to see them and they were happy to see me, but they each only got to visit with me for 3-5 minutes because there can only be 2 visitors in the room at a time and the people who weren't with Mommy had to be entertained in the waiting room.  I can't help but wonder how that feels to a kid, to not see their Mommy for nearly 2 weeks, then see her for literally less than 5 minutes, and then leave.  I can't think about it much because I know what it did to me.  It hurt like hell to watch them leave.  It hurt like hell to see their eyes darting around the room and taking inventory of "Everything they're doing to Mommy".  It hurt like hell to not just scoop them up and hug them properly because we have to be careful of my lines.  So anyway, yesterday I was a total sad sack loser.  I barely walked any laps, I just sat around crying.  If it weren't for my Dad coming to visit I wouldn't have done any.

Even now, when things continue to look up in very concrete ways and I'll be home sooner rather than later, I'm on the edge of tears.  I try really hard with the Medical Types to be super cheerful and courteous at all times.  Their job is really hard and the last thing they need to deal with is Mrs. Weepy McWeeperson.  Plus I'm paranoid that if they see my runny nose from crying they'll assume it is microbe related and ruin everything by making me stay longer.  No way.

I'm pretty mad at myself for crying.  Things could be so much worse.  I carry a lot of shame about the privileged life I lead, but today, I'm just going to say this is hard.  It really stinks.  I don't feel like doing this anymore.

Anyhoo, despite the whining and crying, 13 days out from the transplant, there is progress being made on multiple fronts and I am grateful for it, truly.  I still wish it never happened and sometimes when you carry something this big, you're just gonna cry.

Day +13 ended up much better than I expected when I started writing this.  There are lots of good things happening today and there is a light at the end of the tunnel.

In case you'd like to know just how easy it is to make me cry with even the weirdest things...

Go to this link and understand that EVERY TIME I watch it I start tearing up by :44 and full on cry the rest of the time

I realize cool kids embed videos.  I just didn't have it in me.  But seriously you guys?  That video makes me ugly cry EVERY time.  That video is 3 years old.  Perdiodically for 3 years I have revisited this video to see if I am free from it's clutches and can be considered  marginally sane again and I CANNOT.  I cry everytime.

So there ya have it, sometimes I cry about cancer.  Sometimes I cry about Lester Holt holding up a cardboard TV cut out and some intern getting to bust out her backyard backhandspring on asphalt for the Today Show.  That's a lotta range.