Since I continue to not be feeling well enough to write, I’m having Craig transcribe a basic update that I’m narrating. I’ve been in the hospital for 21 days and it’s been 14 days since the transplant. I have not left this isolation room.
Many of the side effects I recently experienced have left. Unfortunately, new ones have come in. The debilitating bladder spasms and pain is gone. I’ve regained control of my bladder and no longer have to use the commode at night. It seems chemo caused this bladder irritation.
Turned out my Hickmann Catheter line was infected so with a minor surgery they pulled that line and put in a new triple lumen catheter right next to it. Unfortunately it is in an awful spot, basically coming out of my armpit, making it tough to maneuver around, but it is working. At least the pain from the infection site is gone.
One-week post transplant my curly locks started to come out in clumps off of my head. In the shower I wet my hair and the weight of the water was enough to pull much of it from the back of my scalp and leave clumps in my hand. My scalp itched and burned so after a few days of discomfort, Craig helped me to buzz it off. I still have some stubble patches but it’s much easier to watch that fall out than longer hairs. While my eyebrows and eyelashes are still in tact, I’ve lost all my nose hair and delicate inner membranes.
I’ve had a few transformations to my bottom lip. I got incredible sores on them as well as in my mouth. The lip area has been particularly uncomfortable because it has been bumping against my teeth, is very dry, swollen, and bloody. Twice now, it has completely sloughed off. That has not been a fun experience. Right now it is pretty normal and I am just working on keeping it moisturized with vitamin A and D ointment. The sore on the back of my left inside cheek is also healing slowly.
Mentally and emotionally, I’ve been better than I anticipated. It wasn’t until day 21 that I said out loud that I’m ready to get out of here. I think it’s because I’m feeling so tired and fatigued and every day brings some new symptom so I wouldn’t want to be anywhere else right now. Here, the experts can do their best to alleviate pain, assure me that this is temporary and expected, and make me as comfortable as possible. I’m still so pleased with the caregivers and have gotten quite close with some of the nurses who have seen me in some very vulnerable moments and positions.
Craig has been with me just about all day every day, my parents have made a few trips in, and I have had visits by a few local friends. Mostly though, I have not had the energy to visit with anyone, return phone calls or emails, nor even be on the computer much. I’ll literally fall asleep typing mid-sentence or the room will spin and I’m too nauseous to focus on the computer screen.
Every day cards, packages, and messages come and I am so appreciative of these warm and gentle distractions. My room is filled with so many reminders of all of the love and support that I have behind me. The medical team is constantly remarking about how bright and well decorated it is in here.
June 29th brought my 29th birthday. My closest nurse knew she wouldn’t be here on the day of my birthday so she came in the day before in street clothes to bring me some funny birthday balloons. More balloons and ice cream cake arrived from the rest of the nursing staff along with tons in the mail from friends and family. On my birthday eve, friends came by for a short visit of laughs, complete with luau themed decorations. Though I was drugged up and not feeling well for most of my actual birthday, Craig was here to cheer me up with some games of Family Feud on the Wii and other distractions.
The engraftment of my sister’s cells has started and blood counts have begun to rise. My white blood cells are now at 2.5 and my neutrophils are 1.1. This means my new immune system is starting to grow and things are on track in that regard. The emerging white blood cells have helped to fight the many infections that I’ve had. My platelets and red blood cells are still low but holding. I haven’t required transfusions in the past few days. Previously, it was nearly daily that I was receiving blood products. To add some excitement, I had some scary reactions to platelet transfusions. So now, I need to be heavily pre-medicated before they transfuse.
I haven’t been able to pick up a book nor get through a movie without falling asleep. Somehow the days go by pretty fast, mostly working with the different medical professionals that come through this revolving door, and there’s a lot of napping. I’m nauseous, have been having diarrhea, and vomiting most days, sometimes many times per day, and getting very little bits of food down without it coming up. My stomach and back pain have been very uncomfortable. I can tell that my GI tract is a real mess from the chemo.
My legs and back feel very cramped up since I haven’t been able to walk more than back and forth across the room. I’m getting sick of being attached to a huge IV pole. There are many fluids running 24/7. This caused me to gain up to 15 pounds of fluid. In one night with a little over dose of Lasix, I dropped 8 pounds in just a few hours. This left me dizzy and light headed with nurses rushing to replenish my electrolytes. I am now back at my admission weight and it feels nice to not have all the swollen parts.
I miss my dog Sammy tremendously. I can’t wait to go for walks and cuddle with her when I get home. She has been staying at two wonderful “summer camps” at friend’s houses. The frequent photos and even a Skype session have helped keep me close to her.
Focusing on all that I have to return to when all this is over is a huge help. I daydream constantly about swimming, the beach, hiking, kayaking, picnics with my family, BBQ’s with friends, fire pits, camping, and smiling, laughing and joking without having any pain or discomfort to deal with. I dream about starting a family, becoming a better writer, driving my car, and being able to eat delicious foods whenever I want. I dream about exploring everything and being at the pique of carefree physical health.
The reality is that soon these side effects will stabilize and I’ll get a little bit stronger. I may be discharged as early as next week to recover at The American Cancer Society’s Hope Lodge in Manhattan. With that will be a whole new set of adventures, but most importantly I’ll enjoy some freedoms like being untethered, not getting woken up throughout the night for vitals to be checked, walking in crowdless places, and fresh New York City air. That will be nice.