May 8, 2006

 

 

Procrastination has kept me from writing an update.  I wanted to wait until the most current crisis was over.  But crisis has proven to remain current.  But one thing followed another...a two-month continuum of unexpected setbacks.  There will be no inspiration in this report, no quotes to ponder, only the white-knuckle grasp on the rope of hope.

 

In February, a tumor was surgically removed from my right shoulder.  When it had sufficiently healed, ten sessions of radiation were directed to my shoulder and the tumor in my left hip.  A week or so after completion of radiation, my intestine on the left side began to hurt.  The pain intensified.  CT scans and MRIs didn’t show any tumor or evidence of multiple myeloma.  But the pain increased.  On March 17^th, 24^th, and 25^th, I had a series of internal and external ultrasounds, all of which were inconclusive.  Blood labs and another CT scan qualified me for admittance in the hospital for platelet and blood transfusions. 

 

Before discharge, the doctors decided to increase my pain meds.  Not surprisingly, a week of over 80 mgs of Oxycodone a day proved way too much for my 95-pound body.  So, it was decided to slowly lower the dosage.  The next week was torture.  Withdrawal was horrible.  Five days of sweats, chills, tremors, and nightmares gave me a high regard for people who kick “habiits” who conquer long-time addictions.

 

Neither time nor pills dulled the pain in my left intestine that literally crippled me.  When the doctor pressed on my abdomen, he could feel a solid lump, excruciating to the touch.  He assumed that the radiation had “fried” a portion of my intestine.  On April 19^th, an attempted colonoscopy was instantly thwarted by blockage, and was nearly as instantly checked into the hospital for surgery, not knowing what the outcome would be.

 

Later, the surgeon reported that when even making the incision was difficult, they knew something was VERY wrong.  When he opened me up, he was “horrified” by something he had never seen before.  My large intestine/colon was swollen, discolored, and ugly; 12-14 inches were “hard as a lead pipe.”  He removed the entire 8-foot long colon and

created a colostomy.  I woke up to see a 6-7 inch incision up the center of my body closed with stapes.  And to the left of the incision, a clear plastic bag.  When the bag was taken off to show me what had been done, I was sickened by the appearance of a two-inch high, round-as-a-golf-ball, bright red growth protruding from my body.  I shouted, “Is that me?  Is that me?”

 

“Yes,” they affirmed.  “It’s a portion of your small intestine, which will now secrete stool into the ostomy (bag).” 

 

Not exactly what I had expected.  Not the “me” I’ve ever want to see or be.  Once again, lucky me, something rare, unusual, and unknown to the disease.  Radiation “usually doesn’t” cause that kind of damage; the chemo “usually doesn’t” cause the colon to deteriorate.  If surgery hadn’t been done, the tissue would have died within a week and I would have been in big trouble.  “Shudder” fits here.  They medical team is guessing/assuming/surmising that the damage was caused by vasculitis, inflammation of blood vessels.  I don’t think anyone knows the cause.

 

And so I write to say that recovery has been slow, emotional, painful, and discouraging.  Again, I’ve had to increase the pain pills, to the point of sleeping all day in a near comatose state; once again suffering withdrawal as the dosage is lowered.  Once again, wondering when this pattern of “unexpected” the “usually doesn’t” crisis will end. 

 

“Usually doesn’t” hurt much when surgical staples are removed, but on May 4^th, mine were and it did.  It was painful.  One staple had twisted sideways and had to be cut in half, each piece extracted with great effort.  I swear the nurse put her foot on the bed and used both hands to pull out the metal remnants, saying, “You may feel a little tug, honey.”  Define “little tug.”  I cried as I tried not to flinch or move.

 

The good news:   Since coming home, friends have visited every day.  My dear sisters have spent days and nights with me, feeding and giving meds on schedule, helping me bathe, holding on to me as I try to stand up straight and walk.  Dear friend Jan gave me a manicure and pedicure; what a gift is the sense of touch.  True friends don’t care about the shape or state of your body, but the condition of your spirit and soul.  They have prayed for/with me, encouraged me, and loved me beyond comprehension.

 

So, this is what I feel.  In spite of my physical reality, I am blessed; tired, hurting, puzzled, and frustrated, but blessed.  Thank you, once again, for praying continually and fervently.  Jim and I are grateful.

 

Janice 

 

P.S. On Tuesday, I'm in the clinic for an all-day immuinology transfusion.  Wednesday morning, bright and early, Jim and I catch a flight to Boston where we will stay with the boys until Monday, May 15.  A few days after we return, I will begin a new chemo treatment to keep the multiple myeloma under control.  The journey continues...Thanks for going with me.

 

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