Yesterday, Tim had a check-up appt. I am always anxious about these, some times more than others. This was one of those times. He has had tingling in his legs and feet for several months and noticed he is sweating more(though in truth, we've had VERY humid weather in Jersey lately) I sat down and looked at his last 2 rounds of bloodwork and realized there are very slight ticks up in markers with very slight ticks down in blood cell counts. Nothing to worry too much about, but I wondered what this latest bloodwork would show. It did not help that Tim took the dog for a walk just before we left for the appt. and ran into a woman from PA who still visits here and keeps her apartment around the corner and she told us that her dad, who we know, was just diagnosed with stage 3 lymphoma 3 weeks ago. Something about having stuff like this happen around appts. that always puts us more on edge. Anyway, we are seeing the new doc now. Joshua Richter. Young, nice. He worked with Vesole and Jaggannath at St. Vincents in NYC before it closed so I know he must know his stuff. Well, unfortunately, those ticks continued in the wrong direction. His m-spike is .15 now. It was .08. It has been explained to me, in the past and again yesterday, that when it is this low, it is unreliable and always just an estimate, but I also noticed his Kappa free-lites, and therefore the ratio, ticked up a decent amount and I've been told in the past that that would be the first thing to show he
is coming out of "remission." While the numbers are still in range, they definitely are trending up.
I was bummed. He said this is nothing to be concerned about, that the blood counts can be just normal variations, a 2 mile run would raise his platelets and whites and all that jazz, and that the free-lites were still in range, so he is not concerned. Still said we could go 3 months between appts. I am not happy though. I think this is a sign that we are slipping out of the "eye of the storm."
Nothing to be done, I suppose, there is no way to prepare for this. I've had a chance to get my feet back under me, with this long period of stability. I was a wreck in '07 and '08. I realized this morning, that it would be very easy to go right back there again. A friend told me recently that I have learned things and gotten stronger in this time and thinks I will be more able to be strong. I'm not so convinced of that. I'm trying to remember to take it a day at a time. Trying to project or prepare for the future just produces angst. Tim also has had pain in his neck area for a month. Doc thinks it's muscular and gave us a script for a muscle relaxer. If it gets worse or does not resolve, then we will look at getting a CT scan or MRI. On the way out of the doc's office, I ran into a man who has not been to the last few support group meetings. He is not doing well. I gave him a big hug and kiss, and again when we left, but it's so sad to see people doing poorly. I know too many MM'ers in that spot right now and it's heartwrenching.While Tim and I were waiting to see the doc yesterday, there were 3 men there, all 40's, one a new patient. I thought, "so much for an old person's disease." Younger folks getting it all the time now. Tomorrow, I am dragging Tim and Liv to a cancer survivors celebration at Liberty State Park, which is across the river from the Statue of Liberty. Tim has never agreed to go to any of these things but Aretha Franklin is performing, as is Tim's doc I heard, so I told him we are going. Hoping the weather holds out. They're saying showers. I hope it's uplifting in some ways. I hope to meet a gal from southern NJ who I've only known via internet so far, as well as run into others from our support group. Sometimes I feel like life is "all cancer, all the time." Tim and I got a bit of a relief from that. It's still a hard life when you feel like you're waiting for the other shoe to drop. So, that's the update. Have to learn to adjust to this "new normal" again. Nothing stays the same. Happy autumn to y'all. Keep on truckin'.
Saturday, September 29, 2012
Monday, September 3, 2012
Worry
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.
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.
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