Christmas in the hospital

December 28, 2022.  In my bed at Greenwich Hospital where I have been for six days.  I spent Christmas Eve and Christmas Day in the hospital.   When I left the hospital on Dec 28, I had spent 31 nights in a hospital bed in 2022.  This does not include my nights at Hope Lodge.   I am as tired of writing this as you are of reading it.  

I went to the hospital because I had a fever and my children just brought me to the ER.  I didn't really feel that sick,  just a little weak.   It was about ten minutes after I received my December health insurance card as our previous insurance had expired.  When I came into the hospital I watched my pulse ox drop to 77 and my blood pressure to 70/30.  I was septic again.  Flood the body with saline. Then antibiotics.  Rinse, repeat.  

This is the issue with constant chemo: you have very little margin for error.  You, your body and your Doctor are playing a constant game of 'keep away.'   Keep away from edges of the cliffs: cancer or neutropenia.  They are both scary.  

Neutropenia happens when one's Absolute Neutrophil Count ("ANC"), or aggregate white blood cell count, is below .5, such a dangerously low level that it is easy to catch any disease. Mine was .23. There were too few white blood cells in the body to combat much of anything.  It is easy to become septic, a state in which one's body is panicking in reaction to being weak.  When I was in the hospital last week,  there was a panic in the ER that reminded me of when I was in the hospital in January.  A flurry of activity and whispers of "she's septic..."  Hearing that I had sepsis scared me terribly both times, it was proof that my body was at its limit if fighting infection.  Both times it was scary as hell. 

I will never be completely cured.  I will continue to bounce around back and forth from worrying about cancer to worrying about neutropenia.  The trick is to understand how to know if one is being over-treated or under-treated.  Being over-treated for cancer is as dangerous as being under-treated.    If I die of sepsis instead of cancer I am still dead.  I am not being dramatic, it is extremely easy to move into the neutropenia danger zone when a little too much stress or too much chemo makes one's body weak.  I had no pneumonia, I just had a flu diagnosis, but because I had been under a very high level of stress in December, my body had few reserves.  The December stress suppressed my appetite, so although I walked every day and slept well, I probably did not eat enough to stay strong, this is a constant challenge with cancer patients. 

I pass along what I've learned, with the hope that this doesn't happen to you. 

Eat, eat, eat as many protein and fat calories as you can when you are under stress to give your body something to fight with.  I fiercely avoid sugar, horrified by even a single gram of sugar in my food (including fruit).   It would have been better for me to have tried to force calories down than worry about the chemicals like sugar that can cause harm.  

Believe that even a little stress wreaks a lot of havoc.  Your body consumes more calories when you are under duress. Stress causes a release of epinephrine which makes your heart and breathing beat faster, burning more calories.  Stress can also cause a release of cortisol into your system, which activates energy stores.  Some people "stress eat" when cortisol activates their energy stores.  Some people do not.  Those who don't often need to force themselves to eat and if they cannot, it is hard to keep enough energy reserves to stay healthy during times of stress. 

GO TO THE HOSPITAL if you feel sick or have a fever or the chills, and you have a suppressed immune system.  I am constantly amazed how quickly a seemingly innocuous feeling can turn very dangerous.  

I pray that 2023 is a year filled with steady health, happiness and good sleep for you.   Gaining weight is a sign that you are beating your cancer, so take even small gains as a sign of progress.  May your life be filled with peace, happiness, improving health and a lot of love.  Happy New Year. 

 “What drains your spirit drains your body. What fuels your spirit fuels your body.”

― Carolyn Myss