[ruettd]

Caregiver for Mom

by ruettd on Fri Jan 09, 2015 2:19 pm

My mom was 72 when she was first diagnosed with myeloma in June of 2013. Wow - Have I had to learn a lot. I have 7 other brothers and sisters scattered about, but, as anyone knows who has been through more then one or two doctor appointments, the numbers and chemo gets so confusing so quickly. It is hard to relay all that information to a new set of ears at each appointment. So I do most of the appointments and keep all the others up to date.

Mom is Stage 3 with t(4:14) and del(13). Her first bone marrow tap showed >35% plasma cell involvement. We don't even ask for bone marrow taps anymore. Depending on where she is at in the various cycles of chemo, her other blood numbers and light chain ratios have been all over the board. Everywhere but normal, of course.

She went through a 6 month course of Velcade and dex and managed to stay off chemo for about 2 months before her numbers skyrocketed. The docs wanted to try Revlimid but quickly decided it had potentially damaged mom's heart and she now has cardiomyopathy. So, after months of basically watching her beta 2 and light chains climb while they tried to resolve the heart issue, she was finally able to start pomalidomide (Pomalyst, Imnovid) and dex. Unfortunately, she became so neutropenic, the recommended treatment of 4 mg daily for three weeks is now down to 2 mg every other day. But, thankfully, her numbers are dropping for now, even with the reduced chemo.

Her bones have taken a hit, however. She has damage in her hips and pelvis and a fracture in her sacrum. She was able to stay off pain meds until just this week. We really hope to see those kick in soon!

Mom is amazing - I've only seen her cry once throughout this whole process. And, ironically, that was about a year after her initial diagnosis over something trivial the nurse asked. My dad is also great - getting her to the appointments so I can stay at work longer. They both have such a great sense of humor. When mom worries about her weight, dad steps on the back of the scale with her. When asked how they managed to stay married for 53 years, they both simultaneously responded "Whoever left first had to take the kids!" (Remember, there are 8 of us ... and 18 grandchildren and 1 great grandchild). And she prefers the term "chemo-nesia" to chemo brain.

We know the prognosis isn't good. But, as with everything else, Mom has taken that in stride too and has what she calls her "pull the plug" papers ready. Given how quickly her myeloma recurred after stopping Velcade, the fact that she is Stage 3, and now her heart condition, we aren't sure exactly how long she will tolerate the pomalidomide. Her neuropathy and overall weakness keep her from playing piano and directing the church choir, but she still sang songs to her newest grandbaby.

She can no longer work on creating beautiful quilts, but she managed to crochet a doily for each of us for Christmas. She recently burned her arm while making some cookies for the grandkids and told the doctor when questioned about the burn that she was conditioning herself for hell if things didn't work out. She still likes to laugh and hold her grandbabies. She has a lot of life left in her, and we are hoping for enough quality time with her yet to enjoy making some more memories.

Thanks for letting me vent!

[Cheryl G]

Re: Caregiver for Mom

by Cheryl G on Sat Jan 10, 2015 1:17 am

What a wonderful intro­duc­tion, Diane! I was very sorry to hear that your mother relapsed so quickly after her first treatment, but she seems to have incredible spirit, and you and the rest of your family are doing a great job supporting her and each other.

Welcome to the forum. I hope all of us here can be of help as you and your mother continue on this journey. I suspect you'll also be able to lend a hand now and then, as well -- I get the sense you've already learned a lot about myeloma.