jm's Adventure with Multiple Myeloma: Relapsed High Risk Myeloma Update - September 12 2013

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Thursday, September 12, 2013

Relapsed High Risk Myeloma Update - September 12 2013

Hello everyone, Jani here again.  First off, I would like to thank all of your for kind, loving and generous comments for Judy and our family.  We are so appreciative. 

It's Thursday now, and much and maybe not so much has happened since my last posting.  Faye Hummel, one of Judy's closest friends flew in from Colorado on Monday afternoon and stayed the night, leaving at o'dark thirty Tuesday morning (5am) to return to obligations in Colorado.  It was wonderful having her here, I think Judy was sometimes aware, however, now she does not remember.  We have successfully weaned her off almost all the Oxycontin and Oxycodone and she is now relying on a Fentanyl patch (50 mcg/hh), which is applied every 72 hours, for pain management.  She has some very lucid moments and at other times just wants to know "what has happened to me".  We, including our brother Jeff, have had numerous conversations about what is next.  She will ask when we are going to Twin Falls and I have explained that we no longer will travel there, and then explain to her about her condition.  Last night before going to bed, while sitting on the toilet (we are doing ALOT of sitting on the toilet, but that's another story), she asked again and I told her about her 100% plasma cells in her bone marrow.  She said "I am going to die" and we replied yes, but we were both here with her, to keep her comfortable and out of pain.  Jeff told her that it would be ok to let go and she seemed to listen and process this info the best she can.  This talk brings forth great emotion from Jeff and I and I feel like Judy feels that too.  It's a most difficult conversation, but we will continue to help her understand the best she can.

Judy has had some small meals everyday - french toast in the morning, cottage cheese, fruit cocktail, pudding.  Then yesterday afternoon she announced "I am hungry."  She has a very difficult time finding the correct words for things, so Jeff and I do a lot of guessing.  She kept saying she wanted soup yesterday, but I brought her soup that was not what she wanted.  We finally settled on a chicken sandwich, of which she ate half.

Judy spends her days in her favorite location in her house - her SOFA.  We move her back and forth to the bathroom with a wheelchair.  And then in the evening, we move her to her hospital bed.  This bed is from the Lost River Hospital in Arco.  It's not so modern, but does have an electric lift for the head/foot and some side rails.  It's much easier than her own bed.  We have placed her personal bed next to the hospital bed in her room and I sleep in there with her in case she needs anything.  The 1:30am potty stops are killing us!!!

To be true to the character of Judy's blog, I would be remiss if I did not mention her bowel movements....oh joy.  She went 5 days without one, but there was success when Faye was here.  We had added Senna and Milk of Magnesia and that did the trick.  However now, she has had 2 days of diarrhea, which is hard on all of us, but you do what you must.  Just be thankful, we have added no photos of this....Judy would have!

I have become an expert at checking her glucose and administering her insulin.  This may not seem like much, but for me it's a big thing...I have always had a huge aversion to I am rather proud of myself!

Hospice care includes an aide on Monday and Thursdays and the hospice nurse comes on Tuesdays and Fridays.  They have provided supplies like underwear, pads, wipes, the bed, commode.  In addition, they provided the Fentanyl patches which arrived on Monday morning.

Thanks again for all of your loving support.  I will attempt to post more as I can.
Judy and her fellow Sag (Sagittarius), Faye Hummel.
Brother Jeff and father Frank visit with Judy on the her SOFA, with Zoe and Kemmer nearby.
Judy on her hospital bed in her bedroom.
Judy giving Kemmer a pat - how could I not take this photo!!!


  1. it is with such sadness to read what you have wrote, i do hope she is in no pain, does she know what is going on? I will miss her and will pray for her that is all thats left to do i guess,you are an angel sent from above to be doing what you have been doing for her.

  2. Dear Jani,
    How kind of you to think of us, JM’s blog followers, in the midst of all that you are doing. The picture of Judy and Kemmer speaks many words of emotion. I’m delighted to hear that Faye Hummel came by and Judy’s other friends are just a call away. As I told JM in an earlier email, I feel I know her friends, family, and the community. She has graciously shared her world with us and informed us with her medical knowledge. You have presented her blog in true JM form: the pictures, talk of o’ dark thirty, candor, and humor. Again, thank you for thinking of us. May peace and strength continue to be with you, friends, and the family. My children always ask about Ms. JM’s blogs ever since I started reading them in 2011 after my husband’s SCT. Tonight, my family will say a special prayer for all of you. Cheryl from Charlotte, NC.

  3. Jani, be very proud of your nursing as you are doing very well, want to change careers? The pictures are wonderful, thank you! Also I cry when I read your blog but know that Judy is being given the best of care and love by you and Jeff and your father. The dying process is hard work both physically and emotionally, I admire you and appreciate all you do! You are a very good sister! Again, please know I can be there in a moments notice. Love, Ann

  4. To too thank you Jani for taking the time to update us on Judy.
    I would be grateful if you could please thank her for allowing us to follow her journey with her MM. I have loved reading her blog and looking at her gorgeous photos. The love she has for her family, town and Kemmer is evident in every photo.
    May her remaining days be continued to be surrounded by those she loves and be as pain free as possible.
    Love and hugs to you all. Sharyn from Australia

  5. Once agin, thank you Jani for the updates. I too would like to thank Judy for allowing us to accompany on her MM journey. And you also, Jani, as this journey has also been your journey.


  6. Dear Jani,

    It is very sad to read all that is happening. Needless to say, thank you to Judy and to you for making the good effort.

    Comfort and rest to all there.

    My love,
    Danny Parker

  7. Been praying for all of you. Followed your sister's blog as my mom was loosing her battle with this horrific disease. Thinking of all you soon.

  8. When you're down and troubled
    and you need a helping hand,
    and nothing, whoa nothing is going right.
    Close your eyes and think of me
    and soon I will be there
    to brighten up even your darkest nights.

    You just call out my name,
    and you know wherever I am
    I'll come running, oh yeah baby
    to see you again.
    Winter, spring, summer, or fall,
    all you got to do is call
    and I'll be there, yeah, yeah, yeah.
    You've got a friend.

    If the sky above you
    should turn dark and full of clouds
    and that old north wind should begin to blow
    Keep your head together and call my name out loud now
    and soon I'll be knocking upon your door.
    You just call out my name and you know where ever I am
    I'll come running to see you again.
    Winter, spring, summer or fall
    all you got to do is call
    and I'll be there, yeah, yeah, yeah.

    Hey, ain't it good to know that you've got a friend?
    People can be so cold.
    They'll hurt you and desert you.
    Well they'll take your soul if you let them.
    Oh yeah, but don't you let them.

    You just call out my name and you know wherever I am
    I'll come running to see you again.
    Oh babe, don't you know that,
    Winter spring summer or fall,
    Hey now, all you've got to do is call.
    Lord, I'll be there, yes I will.
    You've got a friend.
    You've got a friend.
    Ain't it good to know you've got a friend.
    Ain't it good to know you've got a friend.
    You've got a friend.