Living with Multiple Myeloma

Happy almost February.  There are good resources for patients and caregivers that I would like to pass along.   The first one is Suleika Jaouad's  Isolation Journal s.  When our body's ability to support us disappears, it feels very scary and lonely.  The Isolation Journals answers letters from patients writing with issues for which they are seeking help.  I find Jaouad's answers and the gentleness with which she communicates them to be very touching.  Suleika Jaouad is the author of Between Two Kingdoms, which I mentioned in a previous blog.  She wrote about her heartbreaking struggle with Leukemia as a 20 something.  It is beautifully written, although rather graphic in parts (she talks about her experience with a bone marrow transplant that is really scary - my experience was better than hers).  It is heartbreaking to read about a beautiful young person so full of enthusiasm and hope whose life was short-circuited ...

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...