“Are you at home?! I’m surprised you’re not required to stay at the hospital,” was the comment made by an individual in the cancer Facebook group I belong to. The group is filled with members from around the globe who are undergoing, or have had a stem cell transplant. Being part of this group has allowed me to see how relapsed or refractory Hodgkin's Lymphoma is treated around the globe.
In many locations, stem cell transplants are done as inpatient procedures. The patient stays in hospital, isolated in a small room, and hooked to an IV for approximately 30 days. I can’t imagine being in a hospital for that length of time. The thought of completing this procedure as an inpatient depresses me. I can say with certainty that my mental health would have taken an even bigger beating if I was staying in hospital for 30 days.
In Ottawa, Canada, the procedure is done as an outpatient if you live less than an hour's drive from the hospital AND you have a caretaker with you 24 hours a day for 30 days.
I chose to have my autologous stem cell transplant as an outpatient and I chose to isolate myself from my family. Both of these factors have been positive experiences and I am thankful that I was able to organize my care in such a way.
“Home” is an apartment that I live in with my caregiver. For the first ten days, my caregiver was my mother, and I am forever thankful that she was able to stay with me. My childhood friend also volunteered to care for me, and she is living with me for the duration of my recovery. My caregiver’s role is to help keep me organized or to help with the things I don’t have the energy to do. Like dishes, who has the energy to do dishes?! LOL!
My days are on a wash, rinse, and repeat cycle. For the most part, I feel well, but I have very low energy. I get up in the morning, shower, get dressed, and eat breakfast. At some point in the day, I am driven to the hospital. Upon arrival at the hospital, I have my vitals taken, blood drawn, any new medications are given, and a litre of saline drip is started. Then I wait for the bloodwork to come back. Based on the bloodwork, I might receive additional medication or a transfusion. Today, I got a platelet transfusion. My platelets are really low at 6x10*9/L, and my blood refuses to clot. The transfusion of platelets will keep me topped up until my own body starts making them, or till the next transfusion. I’m usually at the hospital for 2 to 3 hours and then I get to head “home”.
Once I’m home, I putter around the apartment and keep myself amused. Each day I go out for a walk as I am determined to keep my fitness level up. I will not be running any 5km races soon, but I expect by summer I will be.
Although I miss my family, living apart from them and having no demands placed on me has been instrumental in why I feel so successful with my recovery. There is no pressure on me to be a mom, or a wife, or homemaker. All responsibilities like cooking, cleaning, or chauffeuring children to sports have been removed. My sole job is to recover. I have a checklist of things I have to do every day to support my recovery. I’ll be honest, some days, I don’t feel like doing them, but I get on with it no matter what. Some days I don’t have an appetite, but I eat. Some days I don’t feel like washing my mouth with a salt rinse every two hours, but I do. Completing the checklist of items is one of the reasons I feel as well as I do.
I knew not seeing my kids daily would be a terrible experience. So, we organized a visitation schedule so that I can see my boys and husband most days. To keep me safe, we are masked and visits are usually outside.
In terms of my treatment and recovery, we are about halfway through the procedure. The chemotherapy has done its job and my blood work shows that my red blood cells, white blood cells, and platelets are reaching all-time lows. It's been 7 days since my stem cells were transplanted and we are still waiting for engraftment to happen. Engraftment is when the transplanted stem cells graft to my bone marrow and begin making cells. The medical team is optimistic that this reboot of my body will happen within the next few days and then we wait for the numbers to go up, up, up.
Following with much admiration for your tenacity and positive outlook. Big hugs and looking forward to a walk with you (when everyone in the house is virus free—not been the case for last 4 weeks. Xox