Day 15 Post Transplant
I was overwhelmed by the response to my previous post, and I send a heartfelt thank you to everyone who posted a comment or sent me a private email. The tears flowed like never before as I read your words of encouragement and support. I am incredibly grateful to have you all in my life.
Now, here I am 15 days post transplant, and I feel as if time has slipped away. Some of those days were foggy bedridden days of nausea and bad dreams; others were days of half lucidity. Seems that I’m following the typical trajectory of the stem cell transplant process. Here’s what I can remember of this ride, based on notes I made along the way.
Day -2: Admission Day
It was a day of education sessions, visits from nurses and the transplant ward physician and the pharmacist and the clinical trials nurse . . . I’ve lost track of all the information that was thrown at me. It had me in tears. That day, I often wondered if this was all worth it. At times I wanted to say, “I’ll pass. This is going to be too hard. I’ll take my chances.” I know that this is what the previous five months have been leading up to, but they don’t tell you the hard stuff until you’re here in the hospital. I just wanted to run away! In the evening, it was hydration time—a litre of fluid through my central line, in preparation for the delivery of the high-dose chemotherapy the next day. Then more tears. Then bed.
Day -1: High-Dose Chemotherapy Day
This was an exhausting day. Starting at 10 am, there was more hydration, consisting of another litre of fluid, followed by Melphalan (high-dose chemotherapy) diluted in another litre of fluid, and then another litre of fluid. The fluid was to protect my kidneys from the toxic effects of Melphalan. Then Lasix (a diuretic) to help me pass all that fluid and reduce the risk of fluid overload. I spent a good chunk of the day in the bathroom, with my IV pole. During this approximately-6-hour process, I had to suck on ice chips continually to prevent mouth sores, one of the side effects of Melphalan. This added seven large cups of liquid to my already fluid-filled body.
Melphalan is an extremely strong chemotherapy drug that attacks dividing cells in the body. Cancer cells, like the cancerous plasma cells in my bone marrow, divide rapidly, so the Melphalan targets these cells. But, unfortunately, it also attacks healthy cells that are dividing. That brings a host of side effects, such as nausea, vomiting, and diarrhea, all of which would eventually come, not that day, but a few days later.
Day 0: Stem Cell Transplant Day
This was, surprisingly, far easier than the Melphalan day. Canadian Blood Services, which had been safekeeping my stem cells in some sort of freezer, I presume, delivered my stem cells in the morning.
My stem cell transplant was scheduled for 1 pm, so at noon I started to receive Benadryl to prevent a reaction to the preservative in the stem cells. I declined the Ativan; I dislike taking so many drugs. Ha!!! When you’re on this treatment regime, it’s nothing but drugs. (Prior to my diagnosis, all I took regularly was Vitamin D, the sunshine vitamin.)
Frozen at -190.7 degrees Celsius, my two bags of stem cells were taken out of the canister and put in a warm bath to thaw. Infusion time was about 10 minutes per bag. I felt nothing except drowsiness from the Benadryl. I had a long afternoon nap.
Days 1 to 11 Post Transplant
Wow! Some okay days. Some horrendous days. The side effects of the Melphalan struck hard, the main ones being nausea and diarrhea. The anti-nausea meds became a four-times-a-day routine. Talk of what my bowel movements look like became routine. I lost my appetite. I came to dread the meal trays coming from the hospital kitchen because nothing smelled good or looked appealing. I tried Ensure (a meal replacement drink) only to vomit it up an hour later. These were days that I stayed in bed, feeling as if I was never going to climb out of the misery. On Day 7, I gave up making notes in my journal because the days were all the same—bad.
Days 12 to 15 Post Transplant
The fog lifted on the afternoon of Day 12. No nausea. Minimal diarrhea. Some energy. I feel like I’m getting close to being myself again. My appetite has come back, although I’m having a tough time with the hospital food. I dread the supper meal trays. Even the smells are enough to trigger my gag reflex. I’m not a picky eater, so it’s discouraging for me to be having such issues with food. Thanks to Paul, who spends his days with me, we’re bringing in outside food (it’s allowed) for supper, so I can eat again. We go with something that I can think about without gagging. So far, it’s working.
So, what’s happening to my body? Well, the chemotherapy took my blood counts to super-low levels. The job of my transplanted stem cells is to create new healthy blood cells. The process is called engraftment. The cells that are the most closely monitored are my white blood cells, my neutrophils, and my platelets. The former prevent infection; the latter prevent bleeding. They are all on the move in the upward directions, so engraftment is indeed happening.
Every morning at 5 am, my nurse wakes me up to draw blood, so that by 8 am the results are in. My platelets are the determining factor. Once they hit a certain level, I can be discharged. In the meantime, there is talk of a day pass that will allow me to get out of the hospital for a day, and I’d gladly take that for now. I would love to go home and sit in my backyard. It’s Canada Day weekend, and summer is calling me!
Yes indeed summer is calling you. I hope you get a chance to sit in your backyard and enjoy the sun, the sky, the trees, the grass, the birds. Here we are still in a state of emergency with water restrictions and we were blessed with a major downpour last night. Hurray, my buckets are full of water and my veggie garden got watered! Boy oh boy what a chemical journey this business of chemo and stem cells. I have never heard the details as you described; I admired your honesty and your outlook as you move through the horrendous (I was going to say difficult but it sounds like it’s way worse than difficult) times. Keep hoping, keep writing, keep moving forward my friend. I’m thinking about you and sending healing thoughts. Hugs hugs hugs to both of you.
Thanks, Manon. I hope Calgary sorts out the water issue soon. Hugs back to you. And I’m planning for future. Paul and I already registered for the RI convention in 2025. Go Calgary!
Cynth, I am so happy to hear that you are on your way up and soon out of the hospital. What a trouper you are. You did not give up when it was really tough, you fought like the strong person you have always been.
Soon you’ll be home looking back at the hardest experience of your life and saying I DID IT.
You are an incredible human being. The world should have more Cynthias.
Hugs,
KH
Thanks so much, Kathy. Oooh, a world with more Cynthias. There’s a thought.
Dear Cynthia, what a wonderful news. You are a warrior and everything is going to be excellent. God bless you and keep you for long, long time more whit us. Big hug,
Gloria
Thanks, Gloria. We hope to see you someday soon in Colombia.
We have been thinking about you every day and sending our healing thoughts.
Thank you for sharing your journey with us Cynthia, your strength is an inspiration.
Our wish for you is that you can spend at least a few hours on your deck in the sunshine this weekend, or sometime soon. You have earned it.
Love and hugs Richard and Penny????
Thank you. I am enjoying our deck, our flowers, the sun.
It is amazing what you are going through Cynthia. I am certain it helps you just knowing that there are so many of us who are holding your hand as you go through this difficult journey. We are with you all the way and we pray for nothing but the best for you. Continue to be strong and we will be together soon sharing stories and fun times.
Thank you, and we will see you soon out in the country.
Hello dear Cynthia, I am glad that your wish to some time in your backyard on Canada Day has been granted! It is a beautiful today. I think the weather gods knew you were coming home and decided to give you some good basking weather. Thank you for sharing your journey with us.
Yes, I am loving the sun and being home.
I’m so glad to hear you are home now, Cynthia. Your words tugged at my heart as I read what you went through. I hope you are able to enjoy sleeping in your own bed. I hope your appetite has returned. And I hope you are feeling better than you did while you were in the hospital. I envision you on the upside of this journey as your body does what it needs to do to heal and bring back your energy. I am amazed at your resilience. Sending you hugs and more strength. Your friend always, Suzanne
Thanks so much, Suzanne. I have to say that my days in the hospital were the hardest days imaginable. Being home is a joy, but the exhaustion is intense. I understand that this is normal. I expect each day to get better and better.
Just read your post. You are an amazing person. I am so happy that you are finally home after your difficult journey. You shared similar experiences as my sister did. Such a difficult time, but you both are strong women that set an example of resilience and strength for all of us to admire. Wishing you continued healing. Enjoy your backyard. Always thinking of you. Much love. Denise♥️♥️
Thank you so much, Denise. Someday soon, we’ll see each other.