Time is flying by fast and I’m not complaining one bit! I was told the transplant process is much more like a marathon than a race, but I didn’t really understand what they meant for the first few days.
Even though these days can hold the potential for a lot of risk and complications leading up to and after your transplant, for now I’m trying to appreciate how great I feel (thanks steroids AND sleeping pills!), while understanding it wont last forever (and how much I want to eat everything in sight) before my mouth and throat fill up with sores and I stare at food like I wish it would disappear instead of replicate magically ?
Today we did the normal same rounds of chemo as the last two days, but added a 6 hour Rabbit ATG drip to help deplete my t-cells before the transplant. It’s a long time to be attached to a pole, and they definitely want you to stay active as much as possible so I’ve been roaming the same loop of the ward for a large part of the day and have enjoyed getting to meet some of the other people experience this journey when they are out for their walks as well! The best way to get info about what to expect is from people who are only a week or two ahead of you, and today I met a man who said that his chemo ‘honeymoon’ ended about 10 days after transplant, so that gives me some hope that at least I will still be feeling not too bad for a little while longer.
I do know some people on this ward by attending AYA group and Hearth place groups (Thanks networking!) so it has helped make things feel less alone, but it’s always sad to see people you care about sharing this hard journey along side you. Today I had the chance to see a friend from my Hearth Place Leukemia group (But my chemo brain is already kicking in, and Bill had to remind me who he was because I knew I recognized him, but his name was just too far out of reach, and nothing was making sense.)
Chemo brain kind of feels like chain smoking 10 joints back to back, and focusing on anything for more than a few minutes can get challenging. It’s almost like someone just cuts out a huge chunk of your brain where you store information that would typically seem useless, but then isn’t there when you need it and feels kind of confusing. But I’m working hard to keep my brain and body engaged and I know everything will heal and I will find my way back to my nerdy, ‘on the ball’ intelligent self.
My counts started to dip again today, and my nurse said they would likely do the same over the next few days as my existing marrow begins to die and make room in my bones for the donor stem cells to build new marrow. Apparently the death and creation of marrow can cause a fair bit of pain, so I’m prepared, but it hasn’t happened yet, so I’m not worrying! I always tell my team, if you’re not worried, I’m not worried. I will only fear something, if they tell me they are also afraid of that outcome, or a bad outcome is likely. It’s made letting go of the control and so many other things around this process way easier, to let other people also determine my fear scale too. ??♀️
My mouth is definitely starting to get SUPER dry and taste like a metal pole. They told me to rinse it with their special solution every time I go to the bathroom (which is A LOT because they also make you drink three litres of water, and flush your body with 2 more through an IV). There’s a chart outside my door where I am supposed to log all fluid in and out so they can monitor my kidney function and fluid retention, and my nurses are so impressed with my nerdiness and how much I’m ‘On it’ about every aspect of my bone marrow transplant. You know what? I’m proud of myself too. Even though there are still many miles ahead of me, I’m gonna soak up these easy miles, and reflect on how far I’ve come in a year, because I can truly see and appreciate the strength, resilience and trust in myself that this experience is teaching me.
I made myself a promise when I checked in on Friday, that in exchange for living in such an amazing country where this procedure is free, and where I have a real chance for a cure from my cancer, that every time any PMH employees come to my room, for any reason, that I would always try to greet them with a smile and say hello, even if I wasn’t feeling overly friendly.
Before Checking in when I spent three weeks at the condo in Toronto, I spent a large part of the day assessing and increasing the level of gratitude I felt to have lived not just one amazing life, but to have a second chance at life too. Now that I’m here, I spend that time now expressing and feeling filled with gratitude for this team, and for this hospital (It’s off the charts!) and I try really hard to indicate to them how lucky I feel, by always saying thank you, asking questions no matter how dumb I think they are to ensure I’m not making their job harder than need be, and asking them about their own lives outside of these walls. I have tried to embrace this experience with as much love as I can, and it feels much better than the fear I was filled with just a few months ago.
Bill had to leave a bit early today from visiting me, because the sump pit leak monitor told us our house was flooding in the middle of watching a movie on Netflix right in the middle of rush hour ??? Sorry babe! Hope cleaning up the mess isn’t too bad ? Right now I’m just really grateful you installed those alarms. I’m also super grateful you have wonderful friends and family to help you out and lean on throughout this, so that I can lean a little bit on you and not feel so badly.
Definitely still filled with love, light and gratitude today! Sending anyone else out here going through the cancer journey so much of my love. You are not alone. You are doing amazing. You can make it through today, and the day after, and all the amazing days of life that lie just around the bend. Just take it one hour at a time ❤️ You got this.
Debbie KennedyApril 16, 2019 at 8:21 pm
Thank you for your insight as to the process you are going through. I was told that a bone marrow transplant would be my only probability of a cure. But for now my meds are working and my counts are getting back to almost normal… This makes me realize why we do not jump right into a marrow transplant as it is a complicated and strenuous, marathon, as you said. Keep us posted! Love to hear how you are doing, and what you are doing. I care.