Since Mr. B was diagnosed with MM just over a year ago, I have felt like I've been holding my breath. And at times, I have felt like I'm drowning. I have paddled upstream for much of the journey. I have navigated uncharted waters. I have learned to make my voice heard and I have learned to be the voice for Mr. B. But mostly, I've felt so totally alone that the weight was almost unbearable at times. Only those that have walked this path can understand what I mean. It is a walk that I would never have chosen for myself or for Mr. B. Nor would I wish it on anyone else.

Yesterday we had our first visit from the palliative care nurse. She spent two hours with us. During that time, she took a complete history of what Mr. B had been through. She wrote down all of his medications, all of his doctors' names and the phone numbers of his nurses. She also recorded any appointments or tests that were scheduled. She said that she would be the liason from now on with all of his doctors. I felt like a huge weight had been lifted from my shoulders and I could finally take a big breath. All that I have asked for continually during this nightmare is that there would be some communication between all of the doctors. They all seemed to be worried about their area: cancer, kidneys, pain but no one seemed to look at Mr. B as a whole person and how he was progressing. Now at least I felt like I had someone in my corner. Even though Mr. B is not officially on the palliative care program, they did say it was ok for him to see the palliative care nurse. I was very thankful for that. I believe that this is just the first step before Mr. B enters that program and I think his pain doctor recognized that this was the way things were going when we saw him on March 14.

Today we had an appointment with Mr. B's cancer doctor. Since Mr. B has refused dialysis for his kidneys, the doctor cannot recommend continuing with the chemo treatments. He said that it would be counterproductive because the kidneys would continue to fail. Right now the treatment he is on (Revlimid & Dex) is not working to bring down his Lamda Free Light Chains and this is causing his kidneys to fail. If he does take the dialysis, the cancer doctor could try only one more option and that is a stronger dose of a drug that Mr. B had been on previously but had made him very sick (Cyclophosphamide). I fear that it would kill him anyway. So the doctor left Mr. B to make a decision about what he wants to do. At this point he is standing firm that he does not want dialysis. I said I would support him in whatever decision he made. We both cried in the office and when we got home. I know that Mr. B will have to make the decision soon and at that time he would be eligible for the palliative care program if he declines all treatment. I cannot begin to understand what he is experiencing right now. It is not an easy decision to make but the truth is that his body is growing weaker each day and it could be possible that the decision will be taken out of his hands. :-(

And yet, through all of this hell there are moments that bless me beyond words. A few days ago a dear friend sent me a text.  She said to me, "Hey we are going out for an after supper treat to Dairy Queen. Can we bring anything back for you guys?" I was sure Mr. B would refuse since he wasn't feeling that great but he surprised me and asked for a strawberry sundae. I passed on the message to my friend. As soon as I hit "send", Mr. B asked what I was getting and I answered that I was getting a blizzard. So he said that he would like one of them instead. His mind is a bit indecisive right now. LOL  I quickly texted my friend back to make the correction. A little while later she arrived with our treats. It was so neat to see him enjoy his mini blizzard...just the right size for him. And it also brought me to tears that such a small gesture could bless me so much. I wondered if this would be the last time that Mr. B would experience a blizzard ice cream treat. Thank you, Nicky. I will never forget that small act of kindness.
Peggy
3/21/2013 01:32:55 am

The sun is shining and it IS going to warm up...and I truly hope the next time you both enjoy a Blizzard, it is going to be on your deck!
I'm happy for you that you now have someone to help you with all the co-ordinations of the various appointments/doctors. I'm sure all of that was extremely tiring. You have done a such a fabulous job and it is time for you to have a rest from all of that. May it give you extra energy and time to do what you truly want to do...spend quality time with Mr. B doing just the simple little things that he enjoys...while you walk the path together. xoxo

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Shelley
3/21/2013 03:33:31 pm

Although the nurse will be over seeing Daryl's treatments and well being, I will still be the one to manage his appointments and medications. But now I will have someone to advocate for him with all of the doctors and hopefully stop any problems before they start. And the biggest thing is that the nurse will view him once or twice a week to access how he is doing. Right now he is not doing very well. Each day he is with us is a gift from God. I know he is fading fast. :-(

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3/22/2013 12:20:30 am

Shelley,
I can only imagine how good it must feel to have someone else compassionately watching over Mr. B and coordinating his care and meds between all the doctors. When my mother received this type of care as my father battled lung cancer, it meant so much to have someone she could talk to as well.They just understand...

Praying for your strength and wisdom and so thankful your friend provided a much needed treat for both of you!

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Shelley
3/22/2013 02:56:34 pm

We had the second visit from the nurse that will be our regular palliative care nurse. The first nurse was just a replacement and had said we would be seen by someone else most of the time. I'm so glad that she will be coming twice a week. I see that Daryl is getting worse every day. I think that he might not last very long. :-(

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mary
3/22/2013 09:10:15 am

Those little things come to mean so much, don't they? Hopefully you'll have more moments like that in the near future, a frozen moment in time that takes the ache away, even for a heartbeat. My thoughts are always with you, wishing you the best.

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Shelley
3/22/2013 02:58:19 pm

Our moments together are very few these days. Mostly Daryl just sleeps either in bed or in his easy chair during the day. I fight to get him to eat or drink anything which tells me that his body is shutting down. It breaks my heart every day a little more. :-(

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3/23/2013 03:35:15 am

Dear Shelley -- I hold you and Mr. B in the Highest Light of Loving energy, knowing that whatever is ahead - today, tomorrow - that you are both feeling loved and supported and I wish I could do more.... huge hugs!

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Shelley
3/23/2013 03:08:53 pm

Thank you, Sandy. I'm realizing that sometimes friends can give you more support than family can.

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Pat
3/23/2013 11:44:01 am

I am a total stranger to you and your Mr. B, but I found your blog while researching MM. The son-in-law of a dear friend was recently diagnosed with MM; he is in his early 30's and the father of three small children.

While I have no personal experience with the dreadful disease of MM, my own husband suffers from a chronic illness, has had numerous surgeries, takes many medications and sees five specialists in total for his conditions.

In reading your blog posts, I can relate to a lot of what you are saying/feeling. I admire your courage in speaking about your situation!

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Shelley
3/23/2013 03:11:44 pm

Welcome to my blog, Pat! I think that when you are a caregiver it doesn't mater what kind of sickness or disease is involved. Many times you feel alone and need to have people that can relate to what you are experiencing. I hope that I can offer some encouragement to others that are struggling. :-)

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Nicky
3/24/2013 11:56:11 am

Hi Shelley,

I am so very pleased that such a small gesture on my part has blessed you in this way. All I did was answer a little nudge. I am very glad that you now have a palliative nurse to help coordinate things for you. Now maybe your 'full-time job' can be spending quiet time with Daryl.

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Shelley
3/24/2013 04:24:04 pm

I'm just very glad that you answered that little nudge. You are a true friend. God bless you!

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3/27/2013 01:24:56 pm

dear shelley,

i feel so relieved for your finally having a respite from the terrible lonliness and exhaustion you have endured. i know there are still so many things that may be overwhelming, but just knowing that daryl will have the holisitc assessments that he needs and deserves is a huge improvement.

i hope you are able to feel embraced with much love and support, and that you know that you help so many others as you write what you are living.

love, XOXO,

karen, TC

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Donna Sutherland
4/2/2013 06:37:17 am

Dear Shelly,

Thinking of you both today!

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