I apologize for taking an exorbitant amount of time to get another post up, but I have been feeling rather sh*tty as of late. I am sitting here in a slightly morphine induced haze, trying to update you on the previous 5 weeks of my life. Here goes nothing: On December 3rd, a couple of carolers started singing outside our house just after sunset. I walked outside to see about 200 of my friends and family singing Christmas carols to me, Todd, my mom and dad, and Santa Claus, who all happened to be there hanging out with me :). It made me feel beyond honored and extremely loved to see everyone there and feel the Christmas spirit. After about 15 minutes of some of my favorite Christmas jingles, Todd said a few words to thank everyone for their support and then he introduced Santa as my brother Leason 4, my bone marrow donor. The crowd erupted with cheering and it truly lifted my spirits like never before!
I found out later that many of the carolers were also writing me well wishes that night on these awesome little cards and all of them are hung up in my hospital room right now in the form of a garland. It is quite the sight and I love looking at it each day. Thank you to everyone who put the caroling together, especially Micki Rach, amazing soloist Lynn Nolan, Gretchen Miller, Mary McDonald and Jennifer Martin. Thanks to all my Pi Phi sisters for helping put the notes together.
The moment doctors or nurses walk into my room, they are amazed at the way it is decorated. It is far removed from the sterile hospital environment I first walked into. It includes a nerf dart board (areas of target include “chemo,” “bloody mouth pain,” and “aplastic anemia” as the bullseye). This game has become so popular among nurses and doctors that they usually take a few shots during their room visit to better their scores. I also have three Christmas trees, a bulletin board full of pictures, the garland of hundreds of notes from friends and family, two new games my parents have come up with, and a creative display for all of my new head wear. I’m feeling quite at home here, and it definitely helps to have my family here supporting me each day as well. Todd has brought me a very creative and encouraging card each and every day!
On December 14th, as the sun was rising behind the City of Hope, my brother, Leason, had a quart of his bone marrow removed from his hips. To do this, Dr. P drilled a total of 6 holes in the back of his hips to retrieve the bone marrow. As the sun set later that same day, the precious life-saving marrow was transplanted into my body. Leason was able to recover enough from his surgery to come into my room and be there with me during the transplant. I felt so lucky that my brother was a perfect donor match. I was thinking about that day for so long leading up to it, and to watch his bright red bone marrow move through the clear IV tubing and enter my vein in my arm with him and my family there watching was one of the greatest experiences of my life. I’m happy he is almost fully recovered from his surgery. I will always be eternally grateful for my little bro.
You know how when you close your eyes and you can still see the pattern that the light has made, through your eyelids? Shortly after my transplant, I started falling asleep for short little bouts and saw what looked like millions of red dots flowing across my screen of vision… Jimi Hendrix, Transplant Haze.
Now onto the serious stuff….I’m bald. I have a strong affinity for the morphine button next to my bed. My mouth, throat, esophagus and stomach have been hacked up from my chemo, causing me an intense amount of pain. It basically looks like someone blasted a blowtorch down my throat, leaving me with many oozing sores. I am constantly coughing up a bloody mucous from these sores as well. Hence the acronym: CIDNFPAIIB = chemo is definitely not for pussies and is indescribably BRUTAL.
Other than that, there have been minimal complications. Many of the doctors and nurses around here refer to my transplant day, December 14th, as Day 0 and have different benchmarks I should be hitting from there. Today is Day 20, and my team told me that my transplant should ingraft to my bone marrow around Day 21, or January 4th. I got a nice early start! The next big hurdle I’ll be aiming to reach is Day 100, or March 17. I’ll be pretty much in the clear from any “graft vs. host,” or rejection complications. Celebratory green beers and gold chocolate coins are all “on Todd” this St. Paddy’s Day.
My daily routine mostly consists of hanging out with my family, watching movies and all of the recent college bowl games. My parents have two trivia games that I get to play each day as well. One of them is titled “A Little Less Hair and Proud of It” and I am given clues to guess show-biz people (and cartoon characters) lacking in the hair department. Speaking of which, Todd shaved his head as well as his sign of solidarity and love. The other game involves a charm bracelet my parents have started for me. I get a new charm each day and I’m given clues to guess what it is before they add it to the bracelet. Each charm has something to do with my life. Todd brought up every Christmas card as well as all the wonderful letters I’ve received, which I love.
I have a physical therapist visit me each day to help keep me in somewhat decent shape and help prevent my muscles from any major atrophying. I also have a mouth care regimen where a specialist comes into my room every four hours to help prevent any infections from starting in my chemo sores. One of the medications they give me for this resembles a peace pipe, at which point I invite all into my “hookah lounge”. Because of the current state of my mouth and throat, I’m not able to eat. I get all of my calories from a giant bag of yellow liquid that resembles urine through my PICC line. As you can probably recall from a previous blog, I couldn’t stand the low bacteria diet I was on during my previous 43 day stay at the hospital, so I’m a big fan of my new diet.
In addition to my mouth care medications and new bag o’ calories, I have an average of about 6 other meds going into my PICC line each day. These include different antibiotics, liver meds, blood pressure meds, and anti-fungal meds. The longest break I get to myself is about 2 hours during the night, as I have nurses continuously coming in to check my vitals, give me mouth care, do blood draws, and renew or change speeds on my IV meds.
I can’t believe I have already been here for 3 and one half weeks. I am so happy to have my family here and to hear from friends and my extended family each day. I love the blog and facebook posts too. My nurses and doctors have been truly amazing. I hope the rest of my stay goes just as smoothly, and I’m so stoked to start seeing some improvement from the transplant. My white blood cell count is currently 1.6 (up from a recent 0.0 – normal is between 4.0 -12.0)!!! I hope you all had a Merry Christmas, and here’s to a great 2013. I’m not exactly sure when I’ll be going home, but it looks like around 2 weeks from now.
Before I left for City of Hope I had Dora cut my ponytail off and give me a new pixie cut. I sent my ponytail to Locks for Love 🙂