jm's Adventure with Multiple Myeloma: Relapsed High Risk Myeloma Update - September 8 2013

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Sunday, September 8, 2013

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

29 comments:

  1. Thank you Jani (the best sister in the world) for the update. It was sad to read and learn of Judy's condition. She is home in MacKay where it is so important she be
    Susan

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  2. I have been following Judy's blog for 6-8 months. I enjoy the Idaho pictures (my son-in-law is from Hailey, ID but I've never visited the state). Judy, you have been such a strong, positive MM patient. I am always amazed to read about your treatment schedule and you still have time to go run errands about town, visit your Dad and neighbors, and be with your beautiful dogs. My thoughts and prayers are with you. Elizabeth from Florida

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  3. Thank you Jani for the news about Judy although I have never meet her I have grown very fond of her and have the utmost of respect and admiration for her and the way she has fought the myloma battle and by reading her blogs I feel like I have known her for years it is with tears and a broken heart in which I read your news I will pray for her and your family,I know you were such an important part of her life and were there for her when she needed someone the most my respect for you for all you have done and your commitment and love for her is a great thing to have had read about from Judy,with the most of love and respect.Joe

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    1. Joe....one of the last things Judy asked me to do was to send/mail you a Mackay ball cap. Would that be OK???? Please send me your mailing address to my email jlmgolf1@comcast.net
      Jani

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  4. Thanks Jani, Judy has become a friend through her blog and MM journey. She is with the people and dogs she loves in a town that is special. She is an inspiration of strength and courage. Healing energy and prayers. Cindy Walsh Scottsdale, AZ.

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  5. Jani, Judy, Kemmer and Jeff, my love is with all of you. What awonderful family and community you have. Lovey

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  6. Thank you Jani for the update. God Bless.

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  7. Jani, Thank you so much for keeping us up to date and for being there. You are so special. JM really wanted the care of her sister, family, and friends, and you are there in so many ways. With love and support, Cheryl

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  8. Thanks Jani for the update, Judy is lucky to have such a devoted sister and family to be with her. I live in Durham, NC and was diagnosed with MM 2 years ago and have enjoyed her posts from Idaho and Colorado (saw you lived in Greeley--our younger daughter lived there for almost two years-working for Boys & Girls Club)her courage and fight against MM and the wonderful support of you & family. Prayers are with your family. Carol from NC

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  9. Thank you for the update, only wish it were different. Prayers to Judy...

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  10. Jani, this is hard, for me but more importantly for you! Please know your nursing friends will be there In a minute especially me. We are able to help! Judy has been such a wonderful person and I love her dearly! I am here for you both! I just went through hospice with my mom and emotionally it is very hard! Sending you good vibes! Ann

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  11. Jani, I was glad to see you've updated the blog for Judy's many "fans and followers". Of course if you need us we can be there in 30 seconds or less! Love, Wayne & Shirley

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  12. I've read Judy's blog over the last few months, and admired her attitude in the face of the horridness of mm. I hope I can keep the faith with her, in my own response to mm. I'm so sad to hear this news today, and I'm thinking of you all.
    Alex

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  13. Thanks Jani for the update on Judy. Even though we live in different parts of the world I enjoy Judys inspiring blog.
    I will light a candle for Judy and you her family. Sending best wishes and ease. Mary from Ireland

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  14. Thank you for the up date on Judy...I missed seeing her messages. I have been reading her blog all summer, also finding out that you are both related to me on my Grandfather's side of the family. Jensen's My prayers to both of you. Carol

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  15. Thank you, Jani, for the update. I'm so sorry it is this way, but at least she is home. I've followed her blogs for quite a while and always enjoy her pictures and of course the dear doggies. It is a sad day for me to read this, but she has you and is home! Give her hugs from me and best thoughts to you all in this very difficult time .

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  16. Thank you Jani for continuing with the blog and sending on this sad news. I have never met you but am sure that you are an Angel. Please take care of yourself as well.

    Love
    Jane - a friend of Judy's from college - a long time ago

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  17. Thank you, Jani, for the update on Judy. She and the family are in my thoughts and prayers. Wishing peace for all.

    Toni in Portland, OR

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  18. Thank you for your update. Your sister and I have communicated occasionally and I follow her blog. I am keeping you all in my prayers. Love. Terry Lytle from NJ

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  19. Jani, I appreciate hearing the update on Judy. I have followed Judy's blog for the past two years and have silently wished her well from sidelines. I have been vastly impressed by her strength and her joy in her loving family and community. I am wishing you all peace.

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  20. i also have myloma and i know that back pain can be murder i had four fractures of the spine i also could and still can not lay flat I truly will miss Judy I enjoyed writing and reading her blogs and the pictures I am truly sad reading about her condition I cant help but wonder is there not anything more they can do for her she is a wonderful person and has been an assist to the world and for me to have know her from a far.xoxoxo Joe

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  21. Thank you for updating us. I am so sorry to hear this horrible news. I am heartbroken over this. Your sister has been an inspiration. MM is a horrible disease. Thoughts and prayers are with you all. Please let Judy know that we are thinking and praying for her.

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  22. Thank you for taking the time to share Judy's update. I found Judy's blog while desperately seeking MM information regarding the type of treatments and MM that my mom was undergoing at the time....she battled a similar MM for 6 years and I lost her on may 5, 2013. Judy has been such an inspiration to all who have crossed this page....and has touched so many hearts... As I have silently prayed and shared her story with my family. I will keep you all close in prayer and please let Judy know how much she has helped me to better understand this terrible disease. -Dina (Dixon IL)

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  23. Jani, YOU are the bestest sister EVER! Hang tough girl! Thoughts out to you, stay strong like I know you are.

    I also have been following Judy's fight against MM over the last year or so and was so sad to read your update on her condition. Tough genes run in your family, cause she is also one tough chick.

    Love and hugs to you both, and your family during this trying time.

    So sorry and sad for you, but your family/sisterly ties have been such an inspiration on how to truly handle a life circumstance such as this event in your lives. You and Judy have no idea how many lives you truly touched.

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  24. Judy, you have given so much to the rest of us mm patients! Thank you for your spirit and the beautiful way you have shared your story. While lurking on your blog, I have prayed many times for you and will continue to do so. As so many have said, you an inspiration, a soldier and a true gift. Love and hugs, Dana

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  25. Hey Jude, I've followed your blog for some time. Years ago we always argued as to which of us was the bigger wuss. You have proven to be the furthest thing possible from a wuss. I look forward to playing softball with you again some day. Always, Tuna

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  26. Thanks for the update. I missed her blogs . I followed her since months and Has been so inspiring for me . Thanks to keeping us updated and all my prayers are for her and for her lovely family. Carla from Italy

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  27. I found her blog a couple of years ago and have been following her journey. She is a brave and beautiful soul. I hope she finds peace.

    Judy is so lucky to have a caring family that she can count on. Jani your are a wonderful sister to her.

    Ron

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  28. Hi Jani, This is Kathy in Mt. Pleasant. I became acquainted with Judy because of her interest in Mt. Pleasant and my blog "Mt. Pleasant Pioneer Relic Home and Blacksmith Shop". Judy has posted many of her histories of family, Lundberg, Anderson, and Jensen on my blog and I always look forward to something new. She has also shared many pictures of your grandmother and her friends.

    Judy is very caring person; and You are as well . You both come from a very good family. I have followed her journey of Multiple Myeloma and you have always been there for her. God Bless You All.

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