Do you ever stop worrying when your husband has MM? I guess worry has always been a part of my life. Wish it wasn’t. Tim started complaining of tingling and numbness in his legs back in July when we were on vacation in Cape May. Said it had been happening for awhile. Just last week, he told me again. He has tingling that goes from his knees down to his feet. I went to the vitamin store and got the supplements that Dana Farber Cancer Institute recommends for PN. He hasn’t taken them yet.
He hates swallowing pills and is not good about taking vitamins and stuff. I don’t know what else I can do to help protect his nerves. PN is a big “quality of life” thief for people with MM, and this latest turn of events has me upset about that, and worrying what his next check-up brings. He also started having some real bad pain in his neck which is travelling up his head and giving him headaches. We’re hoping it’s just muscle related, but, of course, you always wonder if it has something to do with the MM. He saw his original MM specialist about 7 months ago and he let him stretch his 3 month intervals to 4 months. This makes me a little wary but his numbers were that good and he’s been that stable. Tim got PN by the second cycle of Velcade, back in 2008. We took him off after 4 cycles, as it was becoming bothersome and his numbers were so low. Miraculously, he went into CR, on his own, within the next 2 months and has been either in stringent CR or stable with only a slight band showing up on immunofixation tests. I’ve always known since then that he is not going to be one of those MM’ers who don’t get PN. MM alone can cause it, but many of the chemos used to treat it cause it too. I
was so glad when Carfilzomib got FDA approval, because it is the same type of drug as Velcade,
yet doesn’t cause PN, either as much, or at all, not sure which. There is a chance that we would use Velcade again though, since it worked SO well for him, but we would try the tummy shots, instead
of IV delivery, which has been shown to decrease incidence of PN. We’re in another sad stretch of time in the MM blog and listserv world. We’ve lost several MM’ers recently, including a woman who called herself, “Boogie Barb”, who was a frequent poster on the ACOR listserv and lived more than 20 years after dx. Also, Dan from Colorado has been told he is at the end of his MM journey. He has been thru so much treatment and now needs blood products every few days and has 2 broken arms that they can do nothing about. SO, SO SAD!!!! Susie, widow of Hamada, from the UK posted some e-mails that were written between her and Susan, Dan’s wife. 2 women, brought together by the fact that their husbands had/have MM, trying to support and console one another across the miles. I read this post and thought, “we’re all just sitting here, holding our breath, knowing someday it will be our turn to be in that very desperate, excruciatingly sad place.” I’ve said it before, don’t know what’s worse, a sudden death, where there is so much shock and things left unsaid, or having to watch someone suffer from a terminal illness and face their mortality head on. For the one lost, the sudden thing definitely seems easier on them. But what are we comparing here, 2 incredibly painful tragedies, especially when someone is taken down in their prime. As the last niece and nephew on Tim’s side of the family graduated high school this past June and just went off to college this weekend, I can do nothing but pray and hope that Tim is still with us when Olivia reaches these milestones. Most people want their kids to stay young. I exhale with each birthday, thinking it’s one more year down, that she still has her dad. No way to live, but it’s how we are forced to roll here. We try to take things one day at a time, but it’s impossible not to worry about what the future holds for us.
Liv goes back to school on Thursday. 4 years of high school, which everyone tells me will fly by. ALL the years are flying by. Time stands still for noone.This past year saw so many changes in her. Changes that Tim’s family has missed due to this estrangement. So very sad. Well, not sure how to end this post on a happier note. The only thing I can think of is, I lost 4 pounds. Got more to go, but it’s a start. Can’t take much credit for it though. Happened due to appetite loss from being on and antibiotic, but, hey, if you’re gonna have a bladder infection, might as well get something positive out of it. Onward.