Today marks Day 172 post bone marrow transplant! One year ago, I went to see my internist, Dr. C., for “stiff muscles,” and she referred me to a rheumatologist, an infectious disease specialist and a neurologist within a week. I had no idea what the next year would entail: 263 blood tests, 4 bone marrow biopsies, 54 platelet transfusions, 47 blood transfusions, a bone marrow transplant from my brother, lots of various biopsies and infusions and thousands of pills! A year ago, Todd and I thought I had tendonitis 🙂
Speaking of biopsies, one of the most exciting was my open muscle biopsy of my left thigh. For the first several months following my surgery, ILLFRMT – It Looked Like Frankenstein Ravaged My Thigh. A hematoma grew to the size of a baseball, and my docs kept a careful watch on it. It has now come full circle, and is actually concave at this point.
The Graft vs. Host Disease that I have developed is fairly common following a bone marrow transplant. We caught it early, so I should be able to off it with no major lasting problems. Dr. Fantastic has me taking some new meds (Prednisone, Dexamethasone, Rapamune and a doubling of my Tacrolimus), which seem to be working their magic in keeping the GvH under control. My hideous mouth sores have gone away, leaving only a light colored rash on my gums, which I prefer. I have several inflamed taste buds (feel like bonfires) on my tongue and my lips are still blistered. MTAPFUFTC – My Teeth Are Pretty F-ed Up From The Chemo (and subsequent meds), and it looks as though I have emerged from a coal mine after a year with no Global Grins toothbrush in sight. Even though it is way painful to eat, I am managing to cram everything in sight into my hurtin’ mouth. My appetite is raging. Ironic that I cannot gain weight (I’m down 12 pounds since my hospital stay) with all this food. It’s actually a huge advantage and time saver when it comes to getting dressed. Imagine not having to mess with zippers, snaps or buttons on your pants! It’s all about just pulling them up and being on your way. Some may confuse me for an Emerald Bay housewife gang banger, with my waistband half way down my ass, but that’s cool. With this special look, I am also now available for plumbing projects: www.buttcrackplumb.net. My purse contains a pipe wrench at all times, so I am able to get right to work under any sink. I am sporting a red rash all over my face now, too, which causes some stares, but what ev. Dr. F is confident that my graft of Leason’s marrow is very strong, and a full rejection is highly unlikely. So, for now, GVHPMBOTPPT – Graft Vs. Host Has Put Me Back On The Prednisone Party Train. I am hopeful that we can start a taper of this loathed med before all the side effects that blow kick in.
I greatly appreciate all the compliments on my balancing skills in keeping a vomit-filled styro container from spilling on my new interior while making left turns, avoiding medians and continuing to barf. I have to say, I’m impressing myself as I recount this amazing feat. As you might remember, I doused my crotch with much of the yellow broth, then pulled over so Todd could pour out the remains of the tray in the front yard of a very unlucky resident. After driving by that house again on our next visit to City of Hope, we noticed a new feature to the front yard. Coincidence? Perhaps. Perhaps not. I may be responsible for a massive crash in the Duarte housing market.
Athletic dedications updates:
Todd’s volleyball team, Western States Laguna, dedicated their play at the National Championships this year to me. I know, I know ~ warm and fuzzy. World renowned libero, Harold Noriega, arranged to have “Jos” printed on the jersey sleeves. After competing against a field of 25 teams from all over the U.S., Canada and Venezuela, they came home with the silver medal! I am so proud and thankful of their support 🙂
Rex, Mychaela and Mych’s good friend, Dana Kent, ran the San Diego Rock & Roll Half Marathon also in my honor. Dana spearheaded the effort, running to honor her father that she lost to leukemia, and raised a good chunk of cash for the Leukemia and Lymphoma Society. Thanks to these three and to all of you who supported Dana in her fundraising!
I have been able to get out a little more socially as of late, and I’m loving the opportunities to be out in the normal world again. I had a few lunches at actual restaurants with friends, which have been so wonderful! My mom and I ventured to Fashion Island for a heavenly lunch and my first trip into a few stores in about a year. Todd and I have gone to a couple of matinees recently, making sure we sit far away from our fellow movie-goers. It’s been great just to be back in a theater, even though our last flick totally sucked! Hangover 3 was SO not funny ~ I loved the first and gave the second a thumbs up, so I was kinda bummed when I was forced to throw rotten tomatoes and curse at the screen as soon as the credits rolled after the third. I attended a beautiful wedding shower this past weekend, and even though I grossed out everyone there with my facial sitch, I had a great time and was warmly welcomed. No rotten tomatoes and no cursing. It was a truly lovely event. Todd and I also recently hosted a Global Grins “work day,” where some board members and supporters spent the afternoon preparing 150,000 toothbrushes for shipment to those in need all over the world. Thanks to everyone who participated! We greatly appreciated the enthusiastic support from every volunteer 🙂 Check out www.globalgrins.org, the non-profit Todd and I started a few years ago.
I have been feeling the creative pull of my art room, and decided to create a dress for myself, which was a very fun, stimulating project. Here is a snap of the dress. My lip blisters messed with my smile. You may notice another of the side effects of Graft vs. Host, which I failed to mention above. My right arm fell off 🙂 It’s a very rare, inconvenient complication, but leave it to me to defy the odds once again.