Living with Multiple Myeloma

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, or anyone who has benefitted from professional training in the field of helping others.  I am merely a 50 something whose life was turned upside down by my diagnosis and I want to share some hope. 

I will write more about my stage, my doctor and the wonderful nurses that surround her in later posts.  Today I just want to talk about the treatment as it begins soon after the diagnosis.  My experience has been a pleasant surprise.  

MY CANCER TREATMENT (KRd) began on Dec 8, 2021, day 38, the day before my birthday.  The first three Wednesdays of each month I get an infusion of Krypolis (carfilzomib). Each Wednesday I also take 40 mg of Dexamethasone, a steroid which apparently "stops cancer."  Each of the first 21 days of the month I take 25 mg of Revlimid.  

Each Wednesday that I get a Krypolis infusion,  I get a blood test and then I see my doctor so that she can tell me if my blood is still able to generate red blood cells, white blood cells and platelets despite the onslaught of meds I am taking.  So far, my blood work has been stable.  

OTHER MEDS which support my bones and my immune system that I take every day are Acyclovir (antiviral), Xarelto (to help reduce the risk of blood clots caused by Revlimid), a multi vitamin (my choice) and once a month I get an injection of Xgeva to support my bones. 

SIDE EFFECTS have been rather minimal so far.   Saline solution and Krypolis make me very thirsty all Wednesday and Thursday.  Dexamethasone makes me jittery and sleepless Wednesday night and starving on Thursday.  Light stomach upset from time to time, otherwise, nothing unmanageable. 

A few thoughts: 

- Don't read the side effects on these drugs more than once.  Honestly.  Be aware of danger signs like swollen ankles and debilitating headaches, but the listed side effects scared me more than the idea of having an incurable cancer.  

- Call the Multiple Myeloma Research Foundation, The International Myeloma Foundation or the Healthtree Foundation as soon  as you have a doctor suggest that you might have Multiple Myeloma.  I will talk a lot about this foundation later in this blog, as it is the most amazing group of women (I'm sure there are men there, but I have only spoke with women) I have had the privilege of meeting.  They know this disease, they know how to explain it, they have financed and supported  many (if not all) of the medical initiatives aimed at making this disease less life threatening.  I will get back to this later. 

- Never read prognosis info (!).  It is confusing and constantly changing.  When first "staged" I was convinced that I had less than 3 years to live, in the best of circumstances.   Believing this would have killed my will to fight.  The truth is that there are new protocols and medicines coming out constantly which make the prognosis numbers nothing more than statistical estimates.  Forget trying to estimate a prognosis.  Live.  Make healthy changes in your life.  Surround yourself with reliable and wonderful friends.  

Take care of your health.  Breathe.  Eat vegetables.  Sleep as much as you can.  Turn the lights on.  Walk.  Furnish your life with people who impart kindness, warmth and love.  Forget the rest.  

As scary as this diagnosis might feel, we are lucky to have had wonderful people (like those at the Multiple Myeloma Research Foundation) pave the way to new and sophisticated treatments.  In the relative scheme of things, this is not the worst cancer one could have.   

Sending wishes of love, good health and hope to you for the year ahead. 

PLEASE keep reading ;). 

PRESS THE SMALL WHITE ARROW AT THE TOP LEFT OF THE PAGE FOR THE NEXT BLOG POST. 

Comments

  1. UnknownJanuary 2, 2022 at 5:26 PM

    God Bless Laurie

    ReplyDelete
  2. UnknownJanuary 6, 2022 at 2:58 PM

    Hugs and prayers Laurie! Love your sleep section 100% on target. Feel good. We are rooting for you!

    ReplyDelete
  3. SharoneyJanuary 9, 2022 at 7:55 PM

    Glad to have come across your post, Laurie. Sending you much love and a big hug! You got this! 💞

    ReplyDelete

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