Relapsed High Risk Myeloma Update – September 8 2013

Hello everyone, this is Jani, the sister, reporting.  I know many of you have been concerned about Judy’s missing blogs.  And yes, as you probably have concluded, things have changed. 

Last week Judy was scheduled for the final week of her 3-week cycle of chemo.  We were unable to complete it the week prior because her ANC was too low.  So MSTI scheduled her treatment for 7:20am on Thursday.  We were up at 4 am, and Judy started to complain of more back pain at this time.  We loaded up and were on the road at 5am, but by 6:30am she was EXTREMELY uncomfortable and complaining of pain.  At this time she had been taking 10mg of Oxycontin Controlled Release two times a day.  We would then add an occasional 5mg of Oxycodone Immediate Release and she had at the most taken maybe 3 during a 24 hour period.  So not that many pain meds.  After arriving at MSTI at 7:15am, she was barely able to walk inside.  MSTI nurses immediately did her blood draw and included a cardiac enzyme test.  Then she had a EKG.  Both those tests were normal, but her pain continued.  Judy’s Doctor, Dr. P, was not on duty Thursday, so they called Dr. Simonton to assess her.  She was insistent that Judy go to the ER for additional tests.  At first we thought it might be her episodes of pain that move around her chest (very severe but dissipates usually in about 45 minutes).  However her pain now included chest and neck pain so off we went to ER.  After another normal EKG and chest Xray, they attempted a CT scan but she could not tolerate laying flat.  After a few hours, a “Hospitalist” physician came into to talk to us.  He recommended hospitalizing Judy to get her pain under control, which it definitely was  not.  He also did not think it was a clot in her lung (the CT scan would have helped determine this) since her lung function and oxygen levels were good.  He believed that her myeloma had simply proliferated into all of her bones and perhaps she has numerous micro fractures.  He also brought up hospice and the decision whether to continue to pursue treatment – chemo and transfusions.  He told us we could discuss this with the doctor on the floor.  So off we went to the 4th floor of the St. Luke’s Hospital in Twin Falls.  Still in great pain, they administered 20mg of Oxycontin Controlled Release and then gave her a 50 micron push of Fentanyl.  After some additional doses of Fentanyl, her pain was under control by late afternoon.  I left her around 10pm and stayed in a motel that we had previously reserved for our chemo stay.  When I returned on Friday, she was still comfortable and we discussed with the doctor, the hospice option along with discontinuing treatment.  Judy chose the hospice path.  At least twice during the day, I would ask her if she understood that we were stopping treatment and that included chemo and transfusions, and she indicated that she understood.  Judy was very groggy at this time, but I believe she did understand the choices she was making.  She also told the doctor that she would like to stay in the hospital for a second night.  Thank goodness for our good friends Shirley and Wayne and our father Frank….they all pitched in and took care of our special Triever friends, Kemmer, Kady and Zoe.

Judy remained relatively comfortable in bed throughout the day.  However in motion or attempt to get out of bed is very painful.  Her pain returned at 5pm on Friday, and I discovered that the nurse had only dispensed the 20mg of Oxy CR and not added any additional Oxy IR, which had been prescribed for every 4 hours.  So after an additional Fentanyl push and Oxy IR, she was feeling more pain free….as long as she didn’t move.

Saturday morning after I arrived, she had a shower and we prepared to depart for Mackay.  Judy is unable to walk more than a couple of steps now but I managed to get her into the front seat of Bart in a reclining position and off we went.  We stopped in Arco for another dose of 10mg Oxy IR, and we arrived home about 1:45pm.  I did manage to get her into the house and on the sofa, but I should have had a wheelchair ready….something Shirley had suggested.  She slept most of the afternoon and remained very very groggy.

I had contacted the Lost River Hospice and had our first assessment at 3:15pm Saturday.  Basically, they will provide meds and equipment.  A hospice nurse will come 2-3 times per week along with an aide 2-3 times per week.  Our brother, Jeff arrived from Colorado around 4:30pm and is now staying at Judy’s with me. (He usually stays with our 92-year old father at his house.)  

Judy has eaten some small meals and is drinking, however her mobility is a BIG issue.  We do have a wheelchair and hospice will bring a hospital bed and the like sometime on Monday.  Last night, my plan was that she sleep on her sofa.  That was not her plan.  So after a great deal of hollering and tugging and prodding, I got her into her bed.  Remember, Judy weighs about 185 pounds now and with her own inability to move herself, this is QUITE a challenge.  (You are all asking, where was Jeff  – well he had gone to bed and I was kind of in the moment with Judy….remember the hollering part!!!)

She slept pretty well all night and I woke to give her the Oxy IR at 2:30am and 6:30am.  I have reduced this to 5mg in an effort to see if she is a bit more lucid without sacrificing pain control.  It is a balancing act.  I did inquire with the hospice nurse about Fentanyl patches.  This was suggested by our friend Randy, who is an anesthesiologist, and the nurse thought this a good idea which could help Judy’s lucidity.  We cannot get any until Monday though.  Right now the 5mg seems to be working along with the 20mg Oxy CR twice a day and she is not quite so out of it.  I have read her your messages and emails and will continue to do so.  Sometimes she gets them and sometimes she just closes her eyes.  She is sleeping now on the sofa and seems comfortable. 

I am so glad Jeff came so quickly.  He and I get along great and he will help in anyway he can, I know.  My life partner, Robbyn will come at a moment’s notice, we are still just trying to figure when that is…..big question????   Just a day at time!

Thanks again for all of your comments, texts and emails.  I have shed many a tear while reading them.  Thanks for your love and support.   Jani