Recovering from a stem cell/bone marrow transplant truly is a family-friends effort. Prior to the transplant, my primary caregivers (husband, brother, sister) had to sign a document acknowledging their roles and responsibilities in caring for me – the patient. Why? Because the recovery period is arduous…I wasn’t able to drive for 7 months, go to public spaces or do any of those basic activities of daily living we take for granted. I don’t know if they realized that by signing the Caregiver Agreement they were committing to me and to the BMT (blood and marrow transplant) physician group that they accepted full responsibility for my recovery and well-being.
Before the transplant, my family coordinated who would be responsible for what…such as: driving me to the BMT clinic every day; staying with me at the transplant clinic for 4-6 hours a day, staying with me inpatient, if necessary; sanitizing all horizontal surfaces; grocery shopping; preparing meals; ensuring I ate nutritious meals; doing the laundry; cleaning the house; and bossing me around.
There are many types and levels of caregivers…direct caregivers, secondary caregivers and indirect caregivers. All are important during the entire recovery period, which can take up to several years. For the direct caregivers, they are the ones who gave (or gave up) the most…their lifestyle and lives. I also consider my donor (brother) a caregiver…he willing gave of his time and stem cells so I could live. My life was literally in their hands. Without them, I would not be alive. It’s hard to find the words to thank those who saved you from death. I have much to be thankful for.
The indirect caregivers are those who you may or may not know but are fighting for you in spirit. Your interactions with them are brief. They are the ones who check on you via phone, email, texts and make you laugh. They are the ones who take time to pray for you and send snail mail cards. Let me tell you a couple stories.
The first story is of a person whom I’ve never met, but distantly heard of…a friend of my husband’s parents. Pat is a retired teacher and a devout Catholic. From the time I was diagnosed with leukemia and recovering from a stem cell transplant, Pat went to mass EVERY day and prayed for me. She also submitted my name on novenas. For those unfamiliar with Catholicism, novenas are prayer lists with names that many churches then pray for on their behalf for nine straight days.
The second story is also of a person I never met and is the aunt of one of my sisters-in-law. Nancy sent me a card EVERY week for over 1 year. Receiving these weekly cards (my direct caregivers opened the envelopes) helped me immeasurably.
In both instances, these simple gestures from unknown persons had a profound effect on me, and on my recovery.