[JoeS]

It's just me

by JoeS on Thu Apr 28, 2016 2:55 am

Hello my fellow multiple myeloma patients and my favorite people, caregivers!

I filled in part of my profile and will finish it in the next couple days.

I was diagnosed in September 2013. I had a bone marrow transplant September 2014. I was told that I am in complete response (CR) in January 2016.

It has been a very rough time physically and mentally. My top concern is how this disease has changed my wife's life.

I have the best caregiver in the world. She is my best friend and lover for the last 39 years. In August we will have our 40th anniversary! She has spent every night I have spent in the hospital, other than during the time I had my bone marrow transplant, with me. We live in Pensacola, Florida and my transplant was in Birmingham, Alabama. She would drive up Friday night and go home Sunday night. It was a 4-hour trip each way. During this whole time, she has continued to work full time and take care of my every need.

I spent many hours in the hospital the first 2 years.

Even though I am in CR, I still have a lot of pain in my back and joints. I still fight nausea even though I'm not on any chemo. The fatigue is not as bad as it was, but I still can't be on my feet for much more than 30 minutes to an hour.

We have 4 daughters, 14 grandchildren, and 1 great-grandchild. I'd like to be here long enough to see all of them get married and have their own families. Yes, I said married. I've never been accused of being politically correct. One thing I will always strive to be is honest and upfront. I don't like to waste what valuable time we have left arguing or pretending.

Joe

[dogmom]

Re: It's just me

by dogmom on Thu Apr 28, 2016 9:41 am

Joe,

My husband was diagnosed in January of 2016 at the age of 58. He has IgA kappa multiple myeloma. He spent four nights in the hospital at diagnosis due to his kidneys being affected greatly. He goes for his last induction chemo of 16 weekly of cyclophosphamide, Velcade, and dexamethasone (CyBorD) today and starts the pretesting / harvest appointments on Monday for a stem cell transplant (SCT) on June 1st.

You and your wife sound a lot like us, but we can truly know how each other feels as he was my caregiver for 10 months 11 years ago while I underwent breast cancer surgery and chemo. I felt a lot like you then, as I am sure he does at times now, but we both would not have it another way, and I am sure your wife feels the same.