Wednesday, December 8, 2010

Pokin' and Proddin'

As with many things in life (one can argue life itself), one goes in much the same way as one goes out, transplant being no exception. Way back in August, before being admitted for conditioning chemo and transplant (can you believe that was like, 120 days ago or something?!), I underwent a battery of barbaric testing and procedures to be sure I was 'fit' for transplant and to gain a baseline of my health. All of those were documented in detail on here, if I may, I suggest checkin' out those entries if you're new to this blog (I can't believe I get to say THAT!) for a kick. Otherwise, you know the deal. Over the last two weeks those same tests, most of them at least, have been repeated to see exactly how fucked up (if at all) they and/or GVHD managed to get me. Turns out, I'm not very fucked up at all.

First up, and this was actually several weeks ago, was a Pulmonary Function Test. A PFT is really no big deal to be honest, nothing terribly dramatic involved, it's just....long...and weird. Basically, you sit in this weird pod that sort of looks like a smart car and are instructed to huff and puff into a tube for a half an hour. Remember Hospital Pranayama? It's totally like that but with a nose plug and pure oxygen. Way cool. Chemotherapy, reduced activity and GVHD can severely reduce lung function (read: capacity) and the pre-and post-transplant PFTs show my team whether or not I've suffered any damage. Nope, all good.  Lungs checked out in stellar shape. Gooooood stuff. Oh, as a cool aside: apparently I have very 'long' lungs- which was discovered in my chest x-rays after my port was placed. Maybe that helped?

Next, and this is everyone's FAVORITE: Opthalmology Exam otherwise known as The Paper-in-the-Eyeballs Test. At least this time I a) knew what was coming, b) had my Mom there to document the experience and c) did not have an asshole for a technician. In this gem of a test, the idea is to measure my 'real' production of tears against my 'fake' production of tears to determine if GVHD has damaged my tear production. "What?" you say, "I have 'real' and 'fake' tears without trying?". Why, yes, yes you do. Here's how it goes: they shove these little paper strips under my lower eyelids (the strips look like Ph strips for a fish tank) and then leave them there for 5 minutes. The paper turns blue where my eyes have teared up, indicating volume just like a dipstick does in a car. When those strips are removed, the technician gives numbing eye drops and the test is repeated. The first test shows 'fake' tears- fake because they are from the irritation of the strips being in the eye (uh, DUH) and the second shows 'real' tear production because the eye is numbed to the sensation of the strip. Creative torture, eh? My eyes are perfect apparently. Oh, and I basically LOVE my Opthalmologist here, Dr. Lee. She's this fabulously dressed teeny tiny woman who gushed over the scarf I was wearing (my Hermes from Maggie) and insisted on showing me her 'Hermes of the day' (I kid you not, she owns enough of those scarves to have an 'Hermes of the day'), it was gorgeous. Mom documented the Paper-in-the-Eyeball test (oh yes, the puff again, ugh, it's horrible for me to look at these but, it's what I look like sooooo....)

Test one: double chin included!

Test two: numbing drops make this MUCH easier.

Today was the final test in this battery, the dreaded Bone Marrow Biopsy. This will tell my doctors how well my marrow is doing- no CML? Donor cells doing alright in there? How much blood are you making? No surprises here, this one is painful, it is not fun and this is number....uuuuuhhmmm.....six? Seven? There are as many pencil-eraser sized scars over my hips and back of my pelvis and one more was added today so I don't know. My last BMB was done while I was inpatient during Itchfest 2010 and I was given Versed (a WONDERFUL drug that keeps you awake but leaves you with no memory of the event, just a nice mellow feeling) so I don't remember it at all. These have all gone basically the same way, with the exception of the very first one (just wait for THAT's coming): lay on my stomach, chosen side of the pelvis is injected with copious amounts of lidocaine (I have learned to ask for two vials, much more tolerable), large needle shoved through flesh and into bone (you feel the needle hit and penetrate the bone because bone can't be numbed)- always with the comment that I have very strong bones which is then followed by 'lots of pressure' (fucking pain) and some grunting, bone marrow sucked out by one to four syringes which feels like being punched HARD in the back, then some scraping around for a bone sample and you're done. Yep, that's how this went. The results will be back in a week or so. And I can't get the bandage wet for 24 hours.

Wanna know what the best thing ever is though? Like, THE BEST THING EVER???

I managed to talk my team into having my CVC removed TOMORROW (Wednesday) instead of the Thursday! Yes, ladies and gentleman, this is the LAST NIGHT I will EVER have a FUCKING OCTOPUS burrowed into my chest. FUCK YEAH! Before this stupid thing is torn out of me forever, I wanted to share a video of exactly what the hell goes into living with one of these things. My next post will be that video (broken into two parts apparently because Youtube only allows 10 minute uploads and I'm a jabberjaws).

Having this taken out of my chest is the final symbol, to me at least, of leaving this behind. Well, not really leaving this behind, because I'm still very much experiencing it, but I am no longer a cancer 'patient'. I am a Survivor. I will have the scars to prove it too. The cancer is gone, left the building, so it is time to remove the constant flopping plastic reminder of the bastard as well. The removal of my CVC is a symbol of freedom. I am no longer tied to an IV pole to get the things to keep me alive- I'm able to either provide those things myself or my body is producing what it should. No IV Mag, no drugs pumped into my heart, no blood products. Just my body. So much like an infant having their umbilical cord cut. It always seems to come back to that infant analogy with transplant, doesn't it?

Tomorrow will be an emotional day, I'm sure. The day after, even more and Friday most of all.  What a spectacularly exciting and terrifying thing this all is. Thank you for sharing in this journey with me. As I've said before, it's far from over, the scenery is just changing a bit:)

Before I say goodnight to dream sweet catheter-free dreams, there are two very special shout outs that must be made. First, to my friend Sarah, who has been both a 'cancer friend' and very much a real friend too. She's back in the clink this week with a viral infection, which is a total fucking bummer considering that she JUST finished her last inpatient round of chemo over Thanksgiving. Sarah has been such a blessing to get to know, as well as her family, and I am so thankful for her. Please send Sarah some of that super powerful good juju y'all have been sending my way. Girlfriend kicks major ass. Also, I promised her friend that I would put his supercool local music website and broadcast on my blog because, well, it's supercool and you should always support local music. Check it out and enjoy:

The second shout out goes to the students in Stacey Roses' (Professor Rose? Health Educator Rose? What do you all call her?!) class at Springfield College in MA. Thank you all for following with me, cheering me on and most of all BECOMING DONORS ( y'all)! It is beyond humbling to hear your responses to my writing from your teacher. I hope you all had a wonderful semester and enjoy a restful winter break!

So, until tomorrow, dear friends. Deepest gratitude, as always, for everything and my heart is bursting to see you soon!


1 comment:

  1. You are an amazing blessing to so many people. So so so excited for you to have come through this incredibly difficult process with such flying colors. Thinking of you as you pack and TRAVEL HOME!