Living with Multiple Myeloma

It is still November 1st.  I have decided how I am going to celebrate the fact that I am still alive after my diagnosis four years ago today.   I have decided to start swimming again.   Water soothes and heals me.  It calms me.  Long before I understood that many of us feel soothed in water because of its similarity to our amniotic chapter, I loved swimming.  I actually learned to swim about the same time that I learned to walk.  I remember as a two year old having someone hold my head in their hands as I lay on my back and kicked in the water.  This is how I learned to swim.  I was scared to death, by the way, at that time, but once I learned to swim without assistance, I found a great lifelong love.   My brothers and I swam for our country club as early as they would have us (age 6).  Fueled by frozen Snickers, we swam double sessions every day in a huge pool with the diamonds of July sun dancing on them.  It w...

November 1, 2025.   Four years ago today I was diagnosed with high risk Multiple Myeloma.  Cracked T4.  Seems like such a small problem now that I have had ten other vertebral fractures.   I have had 11 vertebrae crack in the past four years: one due to cancer the other due to a medical error.   I am a different person than I was four years ago.  I am still flawed like most humans, but I am so much happier.  I feel like the person that I was in my early 20s.  Optimistic, positive.  I go to bed feeling happy.  I wake up feeling happy.   For this I feel very lucky.  So what have I learned... 1. All time is borrowed time.   2. Each person in your life gives and takes.  Some give more than they take and the contrary.  Some make you feel positive or happy or inspired.  Some make you feel terrible about yourself because they feel terrible about themselves.    Most of those who ma...

This is a story of a leadership failure.  A medical mistake made by a senior doctor who neglected to take responsibility for his mistake.    When he found out my spine was collapsing on September 1 as he did, he should have said, "I'm sorry.  We will figure out what happened and we will fix this.  Biphosphonate injection tomorrow.  Let's try to stop it before it gets out of control."  That is not what happened.  At all.  His hospital covered for him, but he never apologized or took responsibility for his mistake.  A little apology would have gone a long way.  Quick action may have prevented ten vertebral fractures.  This is the second time that he made me feel bad for his mistake.  It was his last.   Here is the timeline of my story of the fallout from the denusomab rebound effect.   August 31, 2025    I went to my local emergency room with terrible back pain.  I wanted to drive 22 hours ...

I am an auditory learner.  I cannot read a map but if someone tells me "go left for 3/4 of a mile then take the second right, then the next right thereafter and you will find it on the left side of the street about 700 feet ahead" I will easily find my destination.   I read/listen to about 85 books a year, about 45 of which are non-fiction.  I read a lot about eating healthier food, sleeping better, getting more sun, less plastic,  improving posture, lengthening my telomeres, etc.    I have read many pretentious books on how to live forever.  I can't wait until this hype ends.  I've read a few good and simple ones.  My favorite health book of 2024 was Casey Means' book Good Energy .  It was very simple.  It explained what to eat, what not to eat, how to store food/water, whether to drink (or not), how much sleep, sun, peace, love, alcohol, vacation we should have.  Keep a diary and bad habits are easier to spot and then fi...

My once strong, fun and beautiful mother sits up in her peach nightgown and declares "I think that the best years of my life were at the lake."  My parents came home one 1980 s weekend and announced that they had purchased a house on a lake near Middlebury, VT.  I grew up in a town with a beach and I did not understand the value of a lake.   This house was a wonderfully exciting way to learn.  It was an annex to an inn, so it had six bedrooms with ensuite bathrooms overlooking the biggest lake within Vermont's borders.  We each had our own rooms and when we walked into that house all of the stress generated by city life evaporated.    The centerpiece of the lake, that looks and feels very much like Lake Como to me, is Neshobe Island, the summer camp of the literati of the 1920s Algonquin Round Table.  Rumors of Dorothy Parker,  Robert Benchley, George S. Kaufman, and Edna Ferber running naked on the island made adults laugh and children...

It is Chemo Tuesday.  I'm back at the place where I remember I have Myeloma but I am lucky to come in on my own two feet, with all of my hair intact.  This is about the many divides in this country. It causes such profound stress that it may compromise my health.  This is why I am writing about this here. If you are surprised about any of this, you will not want to read what I have to say.  Stop now. I called in to my Congressman's Town Hall last night.  He was eloquent and for an hour there was a verbal tennis match of educated Fairfield County patriots expressing incredulity and frustration and the Congressman lobbed back measured and thoughtful responses.   Of discussion was the $880 m that the richest man in the world was trying to cut from Medicaid;  money that kept poor and sick people able to go to the doctor.   Discussion of the shocking, pathetic minor league interaction on Signal. Honestly, the Secretary of Defense sounded like...