[Dadianne]

Newly diagnosed myeloma complicated by C2 fracture

by Dadianne on Mon May 19, 2014 4:47 pm

Hello, my husband, David, was diagnosed with multiple myeloma - confirmed by bone and bone marrow biopsy - on January 8, 2014.

There was no warning that he was sick, except that he was bothered with back pain that increased in severity over a couple of months and a steady loss of weight. Prior to this, David at 76 years of age lifted weights several times a week, rode his stationary bike and went for long walks. He had not been on any medication for years and did not smoke.

The day he was diagnosed, it was determined that David – who had suddenly started to experience excruciating neck pain - had also suffered a life threatening pathological fracture of the C2 vertebra.

He was rushed from the doctors office to the Nanaimo Hospital [British Columbia], where he received three units of blood, was rapidly hydrated, pumped with drugs and placed in a neck brace. Within a couple of days, he was transported to Victoria for radiation therapy, CT Scans, MRI’s, and a full body x-ray. They found lesions through his body, including his skull. It was discovered that he also suffered a stroke in the cerebellum.

The cancer struck without warning and seems so aggressive.

After a month in the hospital David was released: still wearing the neck brace, still 50 pounds under weight and attending chemo weekly. He was in the hospital for a month. He now uses a walker and is only able to sit, stand or walk for 30 minutes before the pain kicks in.

It has - and remains - a wild and painful ride for both of us.

I find that the role of caregiver is monumentally exhausting: physically, emotionally, and spiritually. Even with in-home supports it remains be overwhelming: the stress, the worry.

I am glad I found this site. The handbook has been downloaded and am teaching myself to interpret the results of his weekly blood tests.

Blessings to all

Dianne

[NZMum]

Re: Newly diagnosed myeloma complicated by C2 fracture

by NZMum on Mon May 26, 2014 12:41 am

Hi Diane,

Sorry to hear about your husband's diagnosis, I know the horrible shock it can be when you are fit and healthy. I am an orthopaedic nurse and understand the stress of a spinal injury on both your husband and yourself. I hope his treatment is going well and he is making progress to get up and going. I have always told patients to aim to do a little bit more each day, but I think with this horrible disease, you need to summarise each week and remind yourself of the highlights.

But you are as important as your husband and need plenty of support as I found my partner worries constantly and that just stresses me out. So I try to give him time out as much as possible. If people offer to help I have found they genuinely mean it and you need help!

I'm pretty lucky because while I am not allowed to do anything due to risk of path fracture until after stem cell transplant. I am aiming for short course triathlon in 3 months.

Try and plan positive things because they do give you hope and that makes the days go faster.

Don't forget to love yourself too because you deserve it (love that is)!

Take care out there!

[Bar-none]

Re: Newly diagnosed myeloma complicated by C2 fracture

by Bar-none on Sat Jun 07, 2014 12:51 am

Hi Dianne, worth checking to see if kyphoplasty is possible. My fractures were T10 and L1 and it has helped me and getting stronger every day.

Blessings to all.

[NStewart]

Re: Newly diagnosed myeloma complicated by C2 fracture

by NStewart on Sat Jun 07, 2014 2:10 pm

Dianne,

As a caregiver you have one of the most difficult jobs of all. We patients are living the disease and know how we feel, or don't, from the inside and can make decisions about how we want to handle things. You, as a caregiver, sees the distresses that we may have and want to help, but don't always know how. You worry non-stop about whether you are doing enough, too much, how long your partner / family member / friend has to live, and on and on and on.

I have been on both sides of the coin as the person with myeloma and as a partner to a man who had lung cancer. One of the things that I learned as a caregiver is that I needed to schedule in down time for me. I made plans to do things with friends that took me out of the house for a couple of hours at a time. Did I stop thinking about what was happening to my partner during that time away? No, but I did get a short time in a different environment talking about different things.

I also learned to make lists of things that needed to be done that could be handled by someone other than me. When anyone asked if there was something they could do to help, I gave them the list and asked them to pick one. Grocery shopping, going to the pharmacy, mowing the lawn, getting gas in the car, picking up the kids from school (or wherever), etc. I admit that I wasn't great at following these suggestions, but when I did it was such a relief to me.

Now as the patient and living alone I have learned to speak up and ask for help when I need it and to accept it when offered. Again, I'm not great at this, but much better than I ever was before. I also am so much more aware of when I am fatigued and have reached my limit of being able to do and letting people know that I need a break. I recently was on vacation in Europe and really had to put this one in action. My limit was about 2 days of activity and then needing a quiet day.

Over time as your husband improves you will be able to relax a little and really take a step back. Learn to let him let you know when he really needs assistance. Schedule little breaks for yourself. Go out to lunch, get a massage, visit a friend for an hour or two. Join a myeloma or caregivers support group if there are any in your area. It's good to get to know other people who are going through this journey, too.

I wish the two of you the best,
Nancy in Phila