Relapsed High Risk Myeloma Update September 19 2013

It’s a beautiful day here in Mackay, Idaho.  Blue blue sky with just a few whispers of white clouds.  It’s the kind of day where Judy and I would have found some kind of adventure.  Maybe a walk on the Mine Hill with the Triever Trio, perhaps a drive in Jonah with the pups, or maybe one of our favorites, the quest for Shay railroad spikes up on the Trestle road.  I will sorely miss those times with mine sister!!!

Memories of this past week are quickly turning into a blur.  Initially Judy was spending day time hours on her sofa and Jeff and I would move her back and forth to her bathroom with a wheelchair with great difficulty.  Moving her about seemed to cause great pain.  A few days ago, when she quit asking for sofa time, she has remained in her hospital bed in her bedroom and using the portable bedside commode with much less movement.  

However, the bowel movement thing has definitely turned ugly.  She has had no bowel movements since last Thursday, so on Tuesday, hospice nurse Mary advised us to give 2 T. of Milk of Magnesia.  On Wednesday, after displaying great abdomen pain, we gave her an additional 2 T. of MofM.  Last night at 9pm, she awoke and said she had to go to the bathroom….now!!!  We got her on the portable commode, however in her confusion she saw this as a chair and not a commode and it took alot of sibling yelling to get her to “let go”.  Then while trying to clean her, she could not longer help us hold her up and Jeff could no longer hold her up and she crumpled to the carpeted floor.  We straightened her out and decided we needed help and called Judy’s great friends, Wayne and Shirley Olsen.  They came right over and Wayne devised a way to get her on a sheet so that we could lift her back onto her bed.  Needless to say, it worked and Judy fell fast asleep.  This morning it appears that none of her parts are broken, as she was able to help us with a potty break.

After starting with a 50mcg/hh Fentanyl patch and supplementing this with 4-6 hours doses of 2.5 mg of Oxy IR, we added an additional 25mcg/hh Fentanyl patch and now have not needed to add any Oxy.  However she still indicates she is in much pain when we try to move her.  After she is laying down the pain seems to dissipate for which we are indeed thankful.

Judy’s cognitive awareness continues to wane.  We have had numerous small exchanges when she asks us “how did this happen to me” or “how did I get this sick”?  I have explained numerous times about the multiple myeloma and her treatments and sometimes she remembers and sometimes not.  She also asks when we are returning to Twin.  All of these questions remain extremely difficult to answer and none seem to resolve her questions.  This morning she asked Jeff, “do you think I am going to die” and he replied, “yes, probably so,” trying to explain what’s happening to her.  Just hurts your heart to see sadness and tears in her eyes.

Jeff is the sweetest man I know.  He is so tender and loving with Judy.  I love him so and also know how much Judy, my father and I appreciate his love and help through this time.  I could not have done this without him.

Judy is sleeping much of the time now, probably 90 per cent.  She drinks some liquids through a straw, Kellogg’s Protein Shake and juice.  She has not had any solid food since Tuesday when she had some cottage cheese.