Sunday, February 14, 2010

Knocked Back Down

I've taken a break from blogging this past two months. I've been depressed and not eating right nor exercising.  Nor have I felt like writing.

Sue had her stem cell transplant in September, then had a relapse in December and had 12 sessions of radiation specifically directed to eradicate a pocket of active myeloma cells in in lower back.  Some of you wrote to caution against radiation.  While we felt that there really was no alternative to radiation for eradication of the myeloma cells in her thecal sac area, it is apparent that the whole course of radiation treatment has caused a lot of damage over a short period of time.

During and following the course of radiation Sue's doctor also had her taking the steroid dexamethasone. She's been backing off that stuff and will stop next week.  The steroids have her face all swollen up and she has a chubby chipmunk-cheek look about her face.  The steroids may also have contributed to a rapid decline of Sue's health.

 Prior to and during the radiation and continuing after the radiation through today, Sue has experienced a significant decline of muscle strength and muscle mass.  She is weak to the point that she has difficulty getting out of a chair, difficulty getting into or out of a car, and difficulty walking -- especially up hill or up stairs.  She also has trouble with her balance, and she has fallen a number of times.  Additionally, she's lost a lot of weight.  She is down to about 100 lbs.  Pre cancer diagnosis -- ca. April 2009 -- Sue weighed about 140 lbs.  When I first met her, about 30 years ago, she was about 115 lbs.  She was a little thin following the stem cell transplant, but she's lost so much weight in the past two months that her legs look like tooth picks and she has very little body fat.  Her skin hangs on her in several places like elephant skin, and she has the gaunt appearance of prisoners of war who've been on near-starvation diets.

Worst of all, her neuropathy in her feet has intensified and creeped up such that now she has numbness, pain and tingling from her knees down.  This past week she's had a disturbing pain in her back between her shoulder blades accompanied by numbness of her finger tips.  We are hoping this isn't another relapse with active myeloma cells again.

We don't know what has caused the muscle weakness, loss of muscle mass and the increased neuropathy.  Some say it is the steroids; some say it is the radiation; some say it could be from the nerve root damage caused by the myeloma pre-radiation. 

Sue's general decline of health in the past two months has been accompanied by a general decline of energy for the daily tasks of living.  She is very tired and easily falls asleep at night and seems to need 10 to 12 hours of sleep.

The only bright spots since December are that the lower back pain Sue was experiencing pre-radiation seems to be resolved and Sue has stopped taking the Dilaudid (morphine) that had been prescribed for her pain.  Getting off the pain killers has given her a better grasp of reality and brought her a little closer to her pre-chemo mental acuity. 

Aside from these  bright spots, this past couple of months has seemed a bit like a death watch.  That's probably overstating the grim reaper's case, but that how it has seemed.  For the time being we are both running low on optimism. 

Don't want to end on a downer note.  We're finding some inspiration in the winter Olympics.  One can only imagine the work that goes into the pursuit of a single Olympic medal.  It isn't just the winners who have been in pursuit of that medal.  A lot of effort goes unrecognized on the medal stand.  Every athlete who trains hard and competes with her best effort is a hero in my eyes.  I'm giving the same accolade to the cancer warriers who fight hard; some get the prize and some don't.  But they're all winners and heroes in my eyes.


  1. I am so sorry to hear this. I had thought things were looking up. Thanks for being real about it all. I will continue to keep you in my thoughts and prayers!

  2. George-
    So sorry to hear your wife's SCT wasn't successful! I just recieved several inquiries about why and when to transplant on my daily blog: I would like to use excerps of this post on my blog. Too many patients assume a transplant will work. Often the do but, in some cases, like your wife, they don't. E-mail me: pat@HelpWithCancer.Org or call 866-336-1696 to discuss. Please--it might help you and I know it can help some of my readers! Pat

  3. George-
    I too suffered greatly from a dex/radiation therapy combo... My loss of muscle mass was staggering! Just wanted to with both you and your wife well... My comment above seems so mercinary and a bit detached as I read it...That was not my intent! Be brave and strong! I know many, many myeloma patients and cargivers who recover even after battling myeloma symptoms similar to yours. Our thoughts and prayers are with you- Pat & Pattie

  4. So sorry to read about these hardships. That loss of muscle tone could certainly be from the steroids and when you say she has pain between the shoulder blades and finger numbness, that makes me think vertabra collapse and nerve compression there. Has she
    had an MRI of her thoracic spine lately? Hope
    things turn around soon.

  5. George and Sue,
    Hadn't picked this up till today (Ash Wednesday). Sunday, once again, a parishioner remembered you for prayers - this particular young woman seems to sense when you need it, so I thank God for her - & for both of you.
    My love and God's blessing