While getting this blog organized to be published, I realized I had written virtually nothing about my hospital adventures. I spent 90 days and nights at City of Hope’s Helford Hospital, but I never really felt up to writing while I was there, and even if I did – and I know this sounds like a big fat lie – I had no spare time. I was insanely tired. I was on Dilaudid (Hydromorphone Hydrochloride), which caused hallucinations to rival any at Woodstock. In addition, there was a constant stream of individuals in and out of my bubble round the clock. Even with my chemo brain, I can recall my 2,000 + hours there quite vividly.
Here’s what I mean by extreme fatigue. It was Christmas morning, and Todd, Mychaela, Rex and I had planned how it would go down. I had contracted with Santa early in the game, as soon as I knew I would be celebrating my favorite holiday in a small room in Duarte, CA. I had gifts wrapped and stockings stuffed by early November. We decided that at 8am, we would Skype each other and I could “be there” for the openings. As traditional as we could get, ya know? I had already been up for hours. Actually, it was a very surreal morning, as one of my favorite nurses came into my room at sunrise and asked me to pick any Christmas carol. She sang the most exquisite rendition of O Holy Night – really belted it out – as I lay in my bed, focusing on her, then out my window to the sun rising behind the San Gabriel Mountains, then back to her. Tears streamed down my puffy cheeks. When 8 o’clock came, I opened my computer and fired up Skype. I was beyond excited to celebrate Christmas with my family. Soon, the three of them signed on and set their computer on the coffee table, so I had a fantastic view of them with their gifts piled up on their laps. We exchanged quick greetings, then Mychaela started to open her first gift… My eyelids had become impossibly heavy. I c o u llll d nn o ttttt k k eeeee pp my yyy ey yyyy essss o pppp e nnnn…. The next thing I knew, I awoke to the banging of pots and pans and lots of yelling. It was T, M and R trying to rescue my laptop from sliding off my lap and smashing onto the hard, cold floor of my bubble. My unconsious, bald head was slowly making its way off their screen as my computer got perilously closer and closer to the bed’s edge. The plan was a failure, as I was not able to stay awake for any gift opening.
As far as the hallucinations, I had some real doozies. It was very typical for my team of docs and P.A.s to make an early visit to room 6211 on their rounds. I can remember being awake when they would gather at the sink just outside my door, scrubbing their arms and hands, then putting on their gloves and masks, but then as soon as they entered, my mind would completely desert the present circumstances, and I couldn’t control my bizarre outbursts. My favorite – telling my team that the giraffe was much too tall for the Winnebago. Their faces were priceless. One of them would gently pat my leg and ask, “Joselyn, are you okay?” I’d snap out of it, and say, “Ya, I’m good. Sorry about that.” Then we’d discuss HGB and ANC counts, and they’d decrease the amount of Dilaudid I could launch into my IV by pressing my magic bedside button.
So this is a typical 24 hours of my life at Helford. It doesn’t sound too exciting, but I really didn’t mind spending my 3 months there. I was surrounded by photos, a garland of well wishes, a Nerf target consisting of “f-ing mouth sores”, “chemo” and “Aplastic Anemia”, homemade games, Christmas trees, loving nurses and doctors, and my family.
BIG NEWS: Rex has been named as a perfect match for a 65-year-old patient needing a stem cell transplant! While my entire family was at City of Hope’s Transplant Survivors’ Reunion in May to celebrate my brother, Leason, saving my life with his bone marrow, Rex joined the Be The Match Registry. About a month ago, he was contacted as a potential match and was asked to fill out a health questionnaire. From there, he was asked to go to City of Hope and have 8 vials of blood drawn for further match testing. A few weeks later, he got word that he was a perfect match, and that they would like him to commit to donating stem cells to save a man’s life. The chances of being called to donate are 1 in 600 if you are on the Registry, so this is quite a rare and amazing honor for Rex! He recently went back up to City of Hope for a 4 hour physical, which he passed with flying colors, so he’s scheduled to return on November 18 to donate. He’ll sit for about 8 hours with IV’s in each arm, while his blood is drawn out of one arm, passed through a machine that removes the stem cells, then returned to the other arm. The cells will then be packed in ice and flown to another country (the patient is from outside the U.S.), where the mystery patient and his doctors will be waiting for it. It will immediately be transplanted into the recipient, who will have prepared his body with chemotherapy and possibly radiation to kill off his damaged blood cells and his immune system. This will hopefully prevent his body from rejecting Rex’s cells. Rex may get to know the identity of this man after one year, if he agrees to exchange information with Rex. We are all hoping for a meeting. That would be quite an emotional and wonderful encounter! The fateful circle of life!
UPDATE: My vision is on the verge of returning to my pre-cataract bliss, but I developed scar tissue during cataract surgery. I then had “frickin’ laser” surgery last week to remove the tissue in the hopes of returning to my 20/20, but that didn’t seem to get the job done. In fact, I had a couple of excruciating episodes of intense sensitivity to light with the most agonizing pain right behind my eyebrow. I had to keep my eyes closed tightly, not even looking outside in the darkness of night, because the light emitted from the moon was unbearable. The diagnosis was iritis. I think the official name should be changed to eyeritis to take advantage of the obvious. It also just looks like a more staunch disease, right? If the “frickin’ laser” doesn’t work its magic, I’m probably looking at LASIK in the near future. Not even in the realm of disaster, but it would be nice to be able to identify some of these blurry blobs in front of me. I’ve had some additional enchanting eczema patches creep up on my arms and legs in addition to 4 or 5 enormous zits placed strategically around my bod. The largest was a Granny Smith apple sized beauty on my right shoulder blade. After getting my first round of baby vaccinations (to replace all the immunities lost during the transplant process), my arms were sore, like you’d expect from having 3 needles stabbed into your right deltoid and 4 in your left, but after a week, my right arm had developed a rash, was hard to the touch (even more rock-like than my usual buff), and was quite warm. It finally returned to normal, but wouldn’t you know I couldn’t have a normal injection fest, I had to BOTFUC – Bring On The F’ed Up Complications 🙂 It has since quieted down. In fact, I’ve had my first booster shot and look forward to 5 more at my next COH visit.
I couldn’t let this glorious occasion slip by without fanfare, so I celebrated with Disney princess and Hello Kitty (now supposedly not a kitty) bandaids.
Todd and I recently went on a little vacay to Bermuda, where we hit it pretty hard (scuba diving a 400′ wreck, fly boarding, swimming with dolphins, riding scooters all over the island (on the left side of the road), playing beach volleyball, smoking Cubans, and i can’t even remember what we did on the second day…) I came home with a cold, which Dr. F wasn’t thrilled about. He was planning on starting a taper of my immune suppressing anti-rejection meds, but that’s been delayed. Oh well, I have to say, the fly boarding sesh was worth it 🙂 While going through airport security at JFK, the TSA chick pulled me out of line and said she needed to do a “hair pat down.” Wow, my fro could be used to conceal weaponry and other various and sundry contraband! Another on the long list of awesome benefits of a BMT 🙂