Living with Multiple Myeloma

I'm lucky and I know I'm lucky.  I feel very lucky to live near New York which is rich with doctors who are great thinkers and innovators.  I had the privilege of meeting a new doctor this week for a second opinion.   He was congenial and kind and fun to talk to.   Then the breakthrough happened. "Your bone marrow cancer and the cancer in your blood are not as bad as the tumor is on your spine.  What would you think if we stopped the KRD (chemotherapy) and just focus some strong radiation on your spine to eliminate the tumor?  You are too young to have to go through years of chemotherapy."  I do indeed love being told I am young.  I am not.   I almost got up and danced.  This was the most thrilling idea anyone has presented to me since November 1.  No chemo means that maybe my immune system could have a little break.  Gamma globulin therapy infusions could support my immune system.   No serious sides effects of those stron...

SEPSIS. PNEUMONIA. ACUTE RESPIRATORY FAILURE WITH HYPOXIA .  I had all of this since I last wrote huddled under my covers, teeth chattering with the chills.  I was released from the hospital late this afternoon following a truly intense six days.  I still have pneumonia.  I awoke, very early Thursday morning to a feeling of hollow dread, as if I had food poisoning.   I could hardly keep water down.  I have never felt sicker.  My son came and sat next to me and fed me glasses of ginger ale on ice for hours, which kept me hydrated.  Finally around noon Thursday it became clear that my breathing was shallow and difficult and I had trouble speaking in full sentences.  Mom, can you get in the car or should we call an ambulance.  I got in the car.  At the ER my pulse oximetry was 84.  People start taking oxygen at 88, so I knew how bad 84 was. I was left in a room with a closed door and I was confused.  I watched the screen and ...

 Day 73 It s Kryopolis Wednesday.  One nurse resigned from the cancer center last week; too much work, too little thanks and too high a risk of catching something.  One of the ladies in the blood draw left, too.  The poor guy that replaced her forget to log my blood test results so I waited an extra 40 minutes for my doctor.  I didn't care. It was his first day.  I sat in my recliner and tried to brainstorm what to write about. It was such a busy day that I'm taking a shot at this now, at 10:30 pm.   Could have written about the 'cream;' the people that always rise to the top because they are amazing. The rockstars that have gone above and beyond to make me feel loved and supported with huge generosity. The angels who send me soup and rolls and chicken dinners and heart shaped brownies.  I love all of you.  CHILLS .  Too much exertion.  I went with my husband and son to get some winter clothes out of our storage unit in Stamford, Ct...

Day 70    God Bless The Saints and the Angels                     This post is about the Saints and the Angels in my life and how important they are to my care and my healing.     The Saints are those who draw my blood each Wednesday, who speak to the specialty pharmacy to renew my prescriptions, who bring me water and tea when I am getting my infusions, who answer my emails when I am confused about dosage of a med that I am taking.  They are mostly all overworked and probably under loved by patients around them.   On January 1, 2022 I asked my children who they wanted to help this year, my youngest daughter said “Health care workers!  They are overworked and put themselves in danger every day and no one is taking care of them!” Amen.    The Angels are my family, my friends, former colleagues and classmates who have reached out and made me feel...

 Day 67  I referred to Whack-a-Mole yesterday without defining it; it is a game in which you hit a mole on the head  in order for him to run underground and show up elsewhere.  Because you can't predict where he will turn up next, it is impossible to get rid of him.  My brief experience with cancer has made me feel like test results can be unpredictable in this way.  Yesterday I learned that some of my Myeloma markers improved, some got worse and my immune system and kidneys paid the price for any gains made.  The point is not to get too fixated on any one reading or any one number: this is a long game.  Some aspects of our health will improve with treatment, at the cost of others.  The objective is to have most of the factors improve over time.   Some people wished me a quick recovery when they found out I had cancer, which brought a smile to my face.  There is nothing speedy about getting through cancer, or at least at the stage I...

  Day 66   Back to reality.     I have been so deeply touched by the kind and loving responses that I have received in reaction to the launch of my blog that I feel like reality has been suspended for two days and I could just focus on the wonderful people who were kind enough to reach out and make me feel loved and supported.  Thank you if you are reading this.  You have made such a difference.  More about this in a subsequent post.  Today is Krypolis Wednesday. Back to local cancer hospital.  First stop is the blood draw.  Lovely friendly women who remind me they “wish they were on someone’s beach” as we stare out the dreary grey January window. They draw my blood.  One woman gets up at 4 am each day to make her son breakfast, pack his lunch, drop him off at school and drive to work.  She does not complain.  She is usually smiling, often laughing and she makes a big difference in my Wed...

  Day 64 SLEEP. Sorry that was loud. Sleep.   Not all days are created equally.  You already know that sleep gives your body a rest and recharge but importantly it rinses your brain, your mind and your thoughts each night.  You know what a good night's sleep feels like.  You wake up feeling like it is easy to smile.  Nothing hurts.  You don't feel 20 years older than your biological age.   There are those days, however, that you are obliged to get up after a night of broken, interrupted sleep and everything hurts.  You do feel at least 20 years older than you biological age.  These mornings are scary.  Coffee, tea, matcha, Coke, Pepsi, Mountain Dew don't work, sometimes they even make you more tired.  Try to avoid them to let your body rest.  DOCTOR'S ADVICE  I asked a doctor at MSK (Sloan Kettering Memorial Hospital in New York) what was the one, most important piece of advice he would give me, given my diagnosis and...

Written on January 1, 2022 Day 62 Happy New Year.  Today feels like a new day, new week, new month, new year, filled with hope, the chance to change bad habits, give love to so many who need it.  It is also the beginning of month #2 of my life with Multiple Myeloma.  Bright and early on the morning of November 1, 2021 I was awakened by a call from an orthopedic doctor with my MRI results:  a tumor on my spine had cracked my T4 (vertebra) and that is why I was having excruciating back pain.  Please call your primary care doctor and find an oncologist.  I don't treat cancer.  This is for anyone newly diagnosed with Multiple Myeloma.  By passing along what I have learned, I hope to help others feel less scared than I did when I received my news.  My diagnosis has given me the privilege of finding where the saints and the angels live on this earth.  There are many of them.   I am not a doctor.  I am not a psychiatrist, psychologist...