Before I get started on what will almost undoubtedly be a lengthy, boring post, let me first say two things
1) Thank you for your show of support with my last post. This week and a half has been murder and I appreciate everyone supporting me through this rough time especially
2) TODAY IS THE LAST DAY OF CHEMO FOR ME! One more shot of Methotrexate to suppress the ol’ immune system of mine and that’s it. It’s up to my body to fight and get back to its old fun self. It sucks because I was just getting over my Mucositis and this will surely bring it back in full effect, but on the other hand, if they deem me healthy enough to suppress my immune system one last time so that the stem cells will have an easier go of it. BRING IT ON! I guess..
Here are days +8 & +9
So what have I not told you and what’s been going on since day +7? Remember when I whined about being afraid of my hair falling out? Well…. It did… Sort of. On Day +7, a day that I cherished as I got to see Anita after an entire week of our relationship being relegated to our phones, the Internet (Thanks, Mr. Gore!), and Skype, a day that saw my blood count fall below 8.0 and required me to have a transfusion and the promise of energy for a weekend with El Jefe, as she laid me to bed before she was to depart to my sister’s house, she rubbed my head as she knows I love to help me to sleep. She stopped short her breath, withdrew her hand quickly, I looked up at her worried face as she declared silently, “It’s starting.” I got up enough to turn around and see that my hair was indeed falling out in clumps. It prompted this face as she wanted to take “one last picture before it was gone.”
No, my nose is not snotty, it’s got moisturizer in it to keep it from getting bloody fro the Mucositis. Which doesn’t stop it from getting bloody inside, but I’d hate to think what it would be like if I didn’t add the moisturizer or do the saline rinse… Blech. Oh, and if you think it looks like I’m about to cry…. Well…. It’s because I’m about to cry. Don’t pretend like you didn’t expect it! Anita stayed a little longer to console me and made sure I went to sleep before leaving.
The next morning, my nurse (Nurse Ashley) was totally a Yankees fan. If nothing else, it assured me that I was in the most capable hands in the hospital. The day started with my asking Nurse Ashley if we could clip/buzz my hair so that I wouldn’t be subjected to the agony of watching it fall out in clumps (yes, I meant for that sentence to sound as dramatic as it sounded… It’s me people). She said that she’d get my meds ready, get the clippers and be back in 20 minutes. My sister rushed over not realizing that 20 minutes in “UPENN Hospital” time could really be over an hour. Anita followed shortly thereafter and while the first pair of clippers didn’t work, the second pair did. And slowly but surely, with that unmistakable barber shop buzzing sound, my hair fell to the floor, clump by clump. I sat in the chair with a mixture of shock and relief on my face. Relief that I could now stop worrying about it and shock that I WAS LOSING MY HAIR! Even if by my own hand! Everyone knows I love my hair! It’s basically the only physical part about my body that I like. And there it went. Bzzzzzzzz.
It felt like an eternity later, but when it was over, I was handed the clippers, walked over to the bathroom for the final trimming of the beard. This is how I emerged on the other side:
I know everyone keeps telling me that I pull the bald look off pretty well, but come on, if that doesn’t say “douche wad” to you, nothing does. And that’s all I could muster for a smile. I really miss my hair. Especially my facial hair!
As devastated as I was by my ailment of alopecia, I didn’t have time to wallow in it. According to to my trusty Google Calendar, I was to be visited by two angels, Sabora and Sandy! Two of Anita and my good friends from up in the Poconos. While we waited for them to arrive, the team in charge of the transplant---- OH WAIT ---- There’s an important story we’re missing.
So, a few days before this, I started to notice the underside of my feet started getting a really raw feeling and when I took a shower, they were kind of hurting afterward. Fast forward to day +9 and my foot is swelling up faster than a fat kid in a cake factory. ---- Back to our story… The team of doctors came to visit me and they’ve decided that my feet are officially swollen and would like some rheumatologists to take a look at my poor dogs as they were definitely barking. This part of the story is going to get interesting later.
Finally, after a day full of bad and sad news, Sandy and Sabora arrive and they’ve brought with them a few surprises, namely James and Phil and Sabs’ little brother! Even better still they were soon to be followed by Sarada. Having them there was absolutely great When Anita first told me that Sabs and Sandy were coming to visit, as excited as I was, I had assumed they were going to be in Philly and were just going to be polite and come through. This was not to be the case. Their entire purpose here was just to spend time with me and take my mind off of everything that was going on and BOY DID IT WORK. I don’t get to spend much time with our Poconos friends so it was just great to sit around and act dumb (well, I wasn’t acting.. This is the real deal here, baby). I couldn’t believe how long they stayed. It made me so happy AND! AND! While they were here, Anita had made a bet that the exercise portion of the BMT manual states that if you’re HGB is <8, you need not attempt to ride the bike. She said it didn’t and I, of course, KNEW that it stated as much. So what now? Well, one weekend in the distant future when I’ve regained a good portion of my strength, the lot of us are going to spend some time down in Ocean City, MD and Miss Anita is going to be purchasing James and I some delicious crab cakes. She said she “doesn’t care” because at this point, it’s all “our money” and she’s still going to he able to have some delicious banana crepes (What happened to our wedding diets?!?!?!) to which I say, of all the things she will taste that weekend… The one thing that won’t approach those beautiful lip of hers is the sweet taste of victory. And nothing tastes sweeter, Mmmm Mmmm mmmm..
Anyway, they stayed forever but finally did have to leave. We took some pictures and they were off. Anita and I spent the rest of the evening watching the movie Stone (well, she watched it while I nodded in and out… I was tuckered out after all that hot brown on brown action earlier). I think with all the sleeping I’m doing, Anita and I are switching places! Hahahahaha.
Alright, all, thanks for reading. Today, instead of leaving you with a funny youtube video… I leave you with something infinitely better… PICTURES!!!!!!!
I was really crying. What an embarassment. Why was this picture taken?? (Again, that’s MOISTURIZER!)
Everyone setting up
Phil, being the gentleman he is, made sure he took the comfy chair.
There’s a picture of my pole
Here’s a picture of Phil commenting on my pole (Damn, you got a huge Pole, Paulash!) (Yes.. I will always be 13 years old)
I’m trying to get my pole in the frame
Anita is stuck behind me so she tries to cop a feel… That girl needs to calm down a bit. Maybe have a crab cake or something.
James “the photographer” set this picture up. I hope he told the laptop to smile!!
Now you KNOW James set this picture up. He’s HUGE!
Finally a nice one, but why is Sarada trying to elbow me in the nuts? Aren’t I going through enough?
A picture of me in pain. Anita enjoyed taking this picture.
James: “So, I like to rub the nuts together right by my chin!”
Oh Good, Zombies…. Now I won’t be able to sleep.
Anita can’t go ONE DAY w/o thinking about blood soaked vampires!
Finally, the attention right where it needs to be.
You're still hotter than Donald Trump and he's got awful hair.
ReplyDeleteI'm not quite sure how that's relevant, but I'm counting down the minutes until I leave work.
Trump and I have similar ATM receipts. }o-)
ReplyDeletePaulash...your strength and willpower are amazing! Hopefully by this time next week, you will be feeling much, much better :)
ReplyDeleteAnd YAY!!!!!! for your last day of chemo!! That is definitely worth celebrating..!!!!!
Love and hugs coming your way....
Sue D.
I am glad to hear that everything is going well for you and wish your body to respond well to the transplant.
ReplyDeleteI have followed your blogs since I was dx with MF in 09, then you seemed to disappear, then saw a post in regards to your BMT. I have been following you prgress with you, your family and friends.
I am also a young 44 yr old with MF and you enspire me with your strength and courage to fight this evil disease. I will have to go through the same thing some time down the line.
Again I wish you well and please continue to post your great results. Take Care!
Cindy T.
Nice to see the pictures...especially the last one because you really looked good and on the road to recovery with the support and fellowship with Anita and your friends. So glad NO MORE CHEMO! Will continue to pray for you. I hope when it is my turn to go through this that I will have as much love and support as you have had. You've never mentioned if your donor was family or from the registry and how close of a match you had. If you think about it I am very interested in information like that. Keep strong, hang tough, heal and bask in the love that surrounds you.
ReplyDeleteDiane