This week, I am completing my 35th round of chemo! It always blows my mind when I stop and think about the amount of treatment I have completed (and likely still have to go). Treatment has been part of my daily life for five years, so sometimes the numbers just get away from me. I am aware of the numbers, but they lose their value with time. Nonetheless, I am embarking on something that is extremely familiar to me.
The difference with this round is the added element of a pandemic: COVID 19. Things actually started to surface in the states during my last round, but the severity has amplified over the last four weeks.
This is similar to day to day life for me in many ways. The precautions that my family and I (and hopefully you) are taking mirror precautions that I have had to take with tougher chemos or post-transplant.
With the added risks and my already immunocompromised system being weakened from the chemo, this round differs from the approaches I was taking with the comfort time provides. For the last seven months, I have been able to do the chemo outpatient and return to my apartment afterwards. I was able to go to class before and after infusions. My family would come and stay with me to drive me to chemo, but some days I would feel well (and independent) enough to take myself.
Now, I am quarantined at my parents’ house. My dad is driving me to Little Rock and back every day. We will average 25+ hours on the road this week. We both mask and glove to enter the hospital (something only I would normally do). We limit what we take into the hospital, because everything has to be sanitized when I get home. We typically would get takeout for lunch, but we are packing our lunch to limit contact. We use disposable containers so we are bringing less back into our home. When we get to the waiting room, we stand instead of sitting on chairs that others have sat in. We limit touching door knobs and elevator buttons. There are no hugs with my nurses and we try to get through clinic quickly to avoid contact.
This all sounds extreme, and perhaps it is, but these are the things we have been taught throughout treatment. This way of life is common for us. It is not fun, but it is what we have to do.
With my transplant, any vaccines I had received were wiped out. I had just started to get vaccinated again after my first transplant when I relapsed and had to get a second transplant. That means that at this time, I am not currently vaccinated for anything (except the flu). I live everyday knowing in the back of my mind that I am not protected. I rely on herd immunity to keep me from getting polio or the measles.
With no vaccine or cure for COVID 19, everyone else is experiencing the fear that I do, except there is no vaccine to protect us. This virus is spreading and killing.
I understand better than anyone that it is not fun to stay home. I have had to stop college many times and I missed my entire senior year of high school. I am not saying it is easy, but sometimes we have to do hard things that are not fun. I struggle to comprehend how others do not understand the importance of social distancing at this time. The selfishness that others display by living their lives as they normally would is disheartening. but I am proud of those who are limiting contact.
At the end of the day, this sucks. I have always heard that all good things must come to an end, but trust me when I say that all bad things must come to an end too. The end is coming, and sooner if we all just cooperate for a collective goal of one day returning to normal.
Stay safe, stay home, and say your prayers, friends.
I talk about so many aspects of fighting cancer. It is easy, because I have been doing it for five years and I am still taking chemo. It is as much a part of my life as doing homework or deciding what to eat for dinner. But, one thing I do not share often, is the emotional toll. … Read More The Emotional Cycle of Fighting Cancer (multiple times)
I rarely share the nitty gritty about treatment, but today is different. With every type of treatment I have done, I have been able to talk to someone who had done it before. When I started this treatment of DLIs, that changed. I still do not personally know anyone who has done this. To have been able to have talked to someone when I was first started would have immensely helped my mental health. My hope is that by documenting this while it is all still so fresh, is that someone, somewhere, one day, will benefit from my experiences. … Read More Donor Lymphocyte Infusions