Today was Tim's oncology appt. He goes every three months and we pushed this off just a bit as he was due when we went to Disney. We saw the original doctor that he started with there. We've seen him a few times to say hello but have not had an appt. with him in 3 years since he last did a bone marrow biopsy on Tim just as that pilot landed a plane in the Hudson River. Note: they were trying to get him to land in a small airport right near the doc's office where we were but he couldn't make it. Anyhoo, I warned Tim to take any negative comments with a grain of salt from this doc. Don't get me wrong, I LIKE this doc a lot
but he said some very grim things to us a few years back and he was wrong about several of them. Kinda sucks when you live through the grief of dealing with that for nothing. So he comes in, we exchange pleasantries. I said, "Did you miss me?!" He said, "Who the hell are you?!" He's a jokester. Then he starts to say that the really strange thing about Tim's labwork............PAUSE- I am already thinking "HOLY MERDE, here he goes already. STRANGE, what's strange? I read the reports. It looks great." So he says that his immunofixation and SPEP show this slight band BUT
the immunoglobulins are trending up. I'm thinking "WHAT, whaddaya mean they're trending up?" Then his head nurse says, "The uninvolved immunoglobulins are going up!" When we finally got to where he was going
with this, what he meant was his IGA and IGM are in normal range, not below normal like they used to be. The IGG's are the ones that were WAY high at dx, but the others were low because the cancer affects the bone marrow's ability to make healthy cells and is too busy making the bad guys. They are all in normal range now. Whew. He scared the heck out of me. The doc explained that this meant his immune system was working really well and that even though his m-spike test is no longer zero, all the rest of his tests point to the fact that his MM seems to be inactive still. He said it's a VERY good sign to see these immunoglobulins in normal range and it really negates the m-spike test showing anything. Kinda. OY. Thank goodness. So then I ask him something that has been on my mind for a long time. When I told him, 3+ years ago, that we were not sure we wanted Tim to be revaccinated after his SCT, he said, "I'm fine with that." Some MM docs don't do this. Tim's transplant docs rec. it but I was afraid of the effect as I'd heard from people who blamed their relapses on it. I then asked the doc about tetanus. Tim cuts himself a lot at work. He said, "I'm not worried about that shot either." I was surprised. I had read that once you get tetanus, it's 90% or more fatal and said somthing to that effect. He shrugged and said he was not worried. I wondered if this was another illness that is really not seen these days, but I didn't think so. I think you can get this from soil, etc. So, just before he walked out of the room today, on a whim because it never made sense to me, I asked him about it and he says, "Of course he needs a tetanus shot! with what he does for a living!" Tim proceeds to show us where he pulled a huge splinter out from under his fingernail just today. I was like, "BUT YOU SAID...." He said, " in the context of being vaccinated after SCT, I was not worried about it. But if it's been past the amount of years that he needs a tetanus shot, you better get him a shot before he gets tetanus."
Holy cow, did I feel like a boob. I had not wanted to get any shots he didn't need, especially after we had
3 friends relapse right after getting all their shots. He's gotten the flu shot every year and just got the pneumovax shot a few weeks ago. I've not wanted to mess with this remission by messing around with his immune system too much. I've been wracking my brains now about when he got his last tetanus shot. I finally remembered he had it done in a hospital ER when he had an infection in his knee so even though I'm getting
him a shot(he has had an SCT in between so there's every chance his immunities to it are gone) I'm gonna
call them and see what year that was. If it hasn't been 10 years, it's gotta be close. I think I'll get one now too. I can't remember my last one. I think I'm passed 10 years. I tell ya, I was just at my MM support group yesterday saying how scary it is to be the one researching and taking so much responsibility for his health and a man told me that he felt sorry for me because he sees that I have immersed my life in cancer and don't even have it. And, it's never enough. I still made a BIG boo boo and my husband may be walking around in real jeopardy. UGH!!!! I was in shock when I left and it was just because the doc had not elaborated. Too many balls in the air. So scary to think that if you miss catching one, it could be a life or death situation. Any wonder my hair's turning gray?
Friday, February 17, 2012
Monday, February 6, 2012
Back from the house of mouse
If ever there was a feeling of being dropped, hard, back into reality, it is when you return home from
Disneyworld. It is a magical place of make-believe. I don't think there is a better place to forget your
troubles. So hard to come home, made all the more painful that it was 82 degrees with a slight breeze
moving the palm tree fronds, and 42 degrees back here in Jersey. But, as I kept telling my depressed
13 year-old, we were very lucky to have been able to take this trip. She has been to Disney 3 times
in the last 8 years, some people never go at all. It was a great time. I'm not fond of flying but having half
my family on the plane made for some helpful diversion. The laughing started right away at the Orlando
airport as my father somehow used coupons to score a souped up Dodge Charger as a rental, while us
and my sister's family spent even more to drive a Toyota Camry and a Mitsubishi Galant. (Cathy upgraded
with one of Dad's leftover coupons to a nicer Chevy model when she went to pick up my other sis and nephew from the airport 2 days later) As we walked to pick up the rental cars in the parking garage, of course we came to my parents' metallic orange muscle car first, hence Tim and Chris arrived at our rentals looking like they'd just lost their best friends. We had a ton of laughs on our trip. We drove out to visit Tim's Aunt and Uncle and had dinner with them one night. The weather was superb. It was in the mid 70's in the beginning of
the week and 81 and 82 by the end. Gorgeous. We actually got to use the huge pool and hot tubs.Tim had started getting a cold before we left, which I caught by Wednesday, which stunk, but it could be worse, right? It isn't easy trying to do Disney with a lot of people. We were 9 and then 11 by Tuesday. Different ages, different priorities. My brother-in-law is an "always late" type. My sister warned him for weeks that he was not to hold our whole family up. The warnings didn't work much. We waited for him constantly. One day, we just left to go to the park and they had to find their own way. He rarely missed stopping at a food stand or drink kiosk and I marvel at the fact that one can spend several thousand dollars going on a trip and have eating and drinking be the first priority. Heck, I can do that at home. To each his own. It was great fun, despite that. I have been catching up with facebook and blogs this morning. I read something about "new normals" for cancer patients and caregivers over at Sarah's blog(Our journey with Multiple Myeloma). One thing, that I don't think anyone can understand, unless they're in the position, is that part of living with this "new normal" is that we know that
coming back on vacation here is not a given. While Tim, Olivia, and I wanted to make sure we got to see everything we wanted to see while there, (we didn't but hit most of it), my sister and her husband knew that they'd be back again when their kids were older so there was no such urgency on their part to get to everything. That's the way it is when you are living with cancer and checking off a bucket list. You may not
speak of it, but you are thinking that you may never come this way again. Even at holidays, you know that others think of future ones as foregone conclusions. For us, this is simply not so. We have to experience each thing with the knowledge that we may not experience it again. There is an underlying sense of urgency in our
lives that people cannot understand. They can project into the future with some sense of assurance that it will happen. We have to live in the moment and enjoy what is happening today only. I've said it before, kids are
great at this, adults..................not so much. But Disney is a place that makes that as easy as it's gonna get. I
did not think we'd see it again after our "08 trip. I guess I should be hopeful and say that we just may go again some day. That's what this "new normal" kinda is. Trying to be hopeful, yet dealing with a very harsh
reality too. It's a daily balancing act that I see as mainly trying to stave off depression. Well, my way of dealing with it is vacations. They are my breaks from reality and I'm so grateful that we are able to get them.
A lot of really good memories were made this past week. We are blessed.
Disneyworld. It is a magical place of make-believe. I don't think there is a better place to forget your
troubles. So hard to come home, made all the more painful that it was 82 degrees with a slight breeze
moving the palm tree fronds, and 42 degrees back here in Jersey. But, as I kept telling my depressed
13 year-old, we were very lucky to have been able to take this trip. She has been to Disney 3 times
in the last 8 years, some people never go at all. It was a great time. I'm not fond of flying but having half
my family on the plane made for some helpful diversion. The laughing started right away at the Orlando
airport as my father somehow used coupons to score a souped up Dodge Charger as a rental, while us
and my sister's family spent even more to drive a Toyota Camry and a Mitsubishi Galant. (Cathy upgraded
with one of Dad's leftover coupons to a nicer Chevy model when she went to pick up my other sis and nephew from the airport 2 days later) As we walked to pick up the rental cars in the parking garage, of course we came to my parents' metallic orange muscle car first, hence Tim and Chris arrived at our rentals looking like they'd just lost their best friends. We had a ton of laughs on our trip. We drove out to visit Tim's Aunt and Uncle and had dinner with them one night. The weather was superb. It was in the mid 70's in the beginning of
the week and 81 and 82 by the end. Gorgeous. We actually got to use the huge pool and hot tubs.Tim had started getting a cold before we left, which I caught by Wednesday, which stunk, but it could be worse, right? It isn't easy trying to do Disney with a lot of people. We were 9 and then 11 by Tuesday. Different ages, different priorities. My brother-in-law is an "always late" type. My sister warned him for weeks that he was not to hold our whole family up. The warnings didn't work much. We waited for him constantly. One day, we just left to go to the park and they had to find their own way. He rarely missed stopping at a food stand or drink kiosk and I marvel at the fact that one can spend several thousand dollars going on a trip and have eating and drinking be the first priority. Heck, I can do that at home. To each his own. It was great fun, despite that. I have been catching up with facebook and blogs this morning. I read something about "new normals" for cancer patients and caregivers over at Sarah's blog(Our journey with Multiple Myeloma). One thing, that I don't think anyone can understand, unless they're in the position, is that part of living with this "new normal" is that we know that
coming back on vacation here is not a given. While Tim, Olivia, and I wanted to make sure we got to see everything we wanted to see while there, (we didn't but hit most of it), my sister and her husband knew that they'd be back again when their kids were older so there was no such urgency on their part to get to everything. That's the way it is when you are living with cancer and checking off a bucket list. You may not
speak of it, but you are thinking that you may never come this way again. Even at holidays, you know that others think of future ones as foregone conclusions. For us, this is simply not so. We have to experience each thing with the knowledge that we may not experience it again. There is an underlying sense of urgency in our
lives that people cannot understand. They can project into the future with some sense of assurance that it will happen. We have to live in the moment and enjoy what is happening today only. I've said it before, kids are
great at this, adults..................not so much. But Disney is a place that makes that as easy as it's gonna get. I
did not think we'd see it again after our "08 trip. I guess I should be hopeful and say that we just may go again some day. That's what this "new normal" kinda is. Trying to be hopeful, yet dealing with a very harsh
reality too. It's a daily balancing act that I see as mainly trying to stave off depression. Well, my way of dealing with it is vacations. They are my breaks from reality and I'm so grateful that we are able to get them.
A lot of really good memories were made this past week. We are blessed.
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