My last day of work until 1/5/09 (or if I can swing it, 1/6/09) was Monday. Since then I've stayed up way past my bedtime, woken up way too early each morning and spent way too much money. And it's only been 1 day!!! Still, I'm feeling pretty good. We've got just enough Christmas decorations up to make it seem like a holiday, but not enough to have to dread taking them all down. We've had two great meals with each side of the family, and have at least two more to come. Rachel (my sister) is in town which I love, and this is the first time that Matty and I won't have to part ways for Christmas. I'm generally more tense around this time of year than I am now, which is lovely- growing up a bit I suppose. Plus, we've learned quickly not to sweat the small stuff.
Yet another wonderful thing about right now is how much I'm looking forward to our trip to Philly. In the past, we've hosted New Year's here, in large part because Matt and Randy are generally around. This year we're being hosted by Philly and I couldn't be happier about that. I can't wait to see the progess Wis and Puddin have made on the house- see it in person rather than on flickr. I can't wait to sneak a cocktail w/ Ryan or exchange jewerly with Jane. I can't wait to not be responsible for any major decisions except what sort of cocktail I'm having (for breakfast.)
Happy Holidays.
December 24, 2008
December 15, 2008
We Waited 2 Hours for THAT???
When Matt was diagnosed with MS, he was also told that he had a heterozygous factor V mutation. That's what the PA that gave us the diagnosis "opened" with. Factor V is a specific gene mutation that promotes blood clotting, and having this mutation (does this make Matty a mutant? I THINK SO!) means that you are at a higher risk for blood clots. Matty calls it his "bonus disease". Anyhow, the neurologist recommended we go see a hematologist. He knows a guy in the building who could also use some of our time and money.
Our appointment was at 10:15. At 11:15 Matty asked the woman at the front window if she could predict how much longer it might be. She couldn't. So we continued to sit in the waiting room, the youngest people there by 20 years at least, and watched people get called in and leave and we're just sitting there. I should mention that the vast majority of hematologists, especially here in the 'burgh are really called hematologist/oncologists. This is because many cancers are treated with "liquid therapies." So not only are we the youngest by at least 20 years, it also looks as though we might be the only people there without cancer. Happy Holidays.
At 11:45 Matt asked the woman at the front window again. She explains that most of these folks are just here getting their treatments, and isn't sure how much later our doctor will be. Oh, and the treatments are administered by nurses, not doctors (I don't imagine many hematologist/oncologists actually hook their own patients up to the chemo machine) so who knows what the hell was taking this guy so long. Well, second inquiry as to where the doctor might be hiding seemed to do the trick. A couple minutes later we were escorted to an exam room. To wait for another 30 minutes in place where it was not possible to inquire about anything. There weren't even magazines in the room. Not a Southern Living or Redbook to be found.
At 12:20 or so the doctor came in. He was nice enough - very clinical, very doctory, very short and skinny. He went over a couple of things and then basically told us there wasn't really anything to worry about. Mutants like Matty are only at a slightly increased risk for developing blood clots, so unless a clot happens he doesn't need to even bother to take an aspirin. This of course is good news. We figured it was nothing, but it's good to hear it from a very very busy doctor. Plus we got to eat lunch at Kings since we had been there so long.
Our appointment was at 10:15. At 11:15 Matty asked the woman at the front window if she could predict how much longer it might be. She couldn't. So we continued to sit in the waiting room, the youngest people there by 20 years at least, and watched people get called in and leave and we're just sitting there. I should mention that the vast majority of hematologists, especially here in the 'burgh are really called hematologist/oncologists. This is because many cancers are treated with "liquid therapies." So not only are we the youngest by at least 20 years, it also looks as though we might be the only people there without cancer. Happy Holidays.
At 11:45 Matt asked the woman at the front window again. She explains that most of these folks are just here getting their treatments, and isn't sure how much later our doctor will be. Oh, and the treatments are administered by nurses, not doctors (I don't imagine many hematologist/oncologists actually hook their own patients up to the chemo machine) so who knows what the hell was taking this guy so long. Well, second inquiry as to where the doctor might be hiding seemed to do the trick. A couple minutes later we were escorted to an exam room. To wait for another 30 minutes in place where it was not possible to inquire about anything. There weren't even magazines in the room. Not a Southern Living or Redbook to be found.
At 12:20 or so the doctor came in. He was nice enough - very clinical, very doctory, very short and skinny. He went over a couple of things and then basically told us there wasn't really anything to worry about. Mutants like Matty are only at a slightly increased risk for developing blood clots, so unless a clot happens he doesn't need to even bother to take an aspirin. This of course is good news. We figured it was nothing, but it's good to hear it from a very very busy doctor. Plus we got to eat lunch at Kings since we had been there so long.
December 11, 2008
Home for the Holidays
Well it's official. We aren't going to visit Matt and Randy in Delft, Netherlands, for xmas or new years. Like Matty said, we just don't have the ching for it right now. I admittedly wasn't as eager as Matty to go over there - not because I don't want to spend the holidays with Matt and Randy - because I do - but because I felt like it simply made more sense to do it in the spring - we would likely have a longer time, better weather, time to save, and I'll be done w/ grad school. Still, knowing that we're not going is sad - disappointing to say the least. Matty gets so much from spending time with those guys. It's amazing and lovely to witness. They are family, they are his best friends, they are soulmates and I know Matty could use a big dose of those guys for sure. So basically I'm super bummed. I know that we won't be able to spend each holiday with them, but our time together around Christmas has become such an important tradition that Christmas will certainly loose something without their companionship. I'm sorry Toots; even though I was a bit skeptical, I really did want this to work out for you. For us. And them. For the whole family.
December 10, 2008
Power of Knowledge
I just posted, and then read Matty's latest blog entry (http://mwstory.blogspot.com/). It reminded me how little I actually know or understand what is happening to him - physically and emotionally/mentally. I remember when we first went to see his PCP about his symptoms (I am so grateful that he is not only willing but glad to have me at his appointments) I suggested that he write a list of symptoms. When I saw the list I was floored. I had no idea the severity or the frequency of what was happening to him. I felt so sad - I had no idea this was happening to him literally just about all day,everyday. The 'signs' if you will, can not be seen by anyone other than Matty really. For all I know, they would happen to him while we were together having dinner or watching tv. There is no sense in 'what if' ing. He was diagnosed and is being treated before any physically life altering effects happened. His body is still in control of itself; he is physically almost unaltered. Yet when I saw his list of symptoms, when I just read his last post, when I know things are ok enough to step back and really look, I can't help but think how much this must have been weighing on him all along. I go back to the snake bite reference. The man is certainly not perfect, no one is, but I wish I could go back in time and take this from him. Still, as early as it is and as odd as it may sound (especially coming from someone who is at the very least agnostic), this has been and I will make sure it will continue to be an overall positive experience. A blessing in disguise if you will. To the exent that it is possible for any human being to win, we will. Trust me.
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Old Issues, New World
Those 'cute' relationship 'nuances' don't go away when your partner (or yourself) has any diagnosis other than a shrink saying "she/he is cured" - which let's be honest, never happens. One's (my) reaction to said 'nuances' may or may not change, however. And to be honest, initial reaction is to flight rather than fight. After all, this is a rough time; wouldn't want to exacerbate it. Wouldn't want to upset anyone.
Let me digress just a bit. Since posting my first post, I've thought quite a bit about what this blog should be, or should mean - to me and to anyone who might read it. And I've decided that this blog, for what it is worth, will not be a stream of consciousness, a first draft, or a rant. I hope to leave those more raw thoughts, reactions, emotions to an actual journal. Journaling is something I still believe is important, even if I've yet to swallow my own advice pill in that regard.
Ah, I actually have just streamed, ranted and first drafted (this post has taken much longer to write than to read.) And I already feel better. In short, being a partner to someone who has just been diagnosed with MS, or just being diagnosed with MS, doesn't mean there are any 'get out of jail free' cards. Real life still happens, including the parts that make you (or your partner) pancake mad.
Let me digress just a bit. Since posting my first post, I've thought quite a bit about what this blog should be, or should mean - to me and to anyone who might read it. And I've decided that this blog, for what it is worth, will not be a stream of consciousness, a first draft, or a rant. I hope to leave those more raw thoughts, reactions, emotions to an actual journal. Journaling is something I still believe is important, even if I've yet to swallow my own advice pill in that regard.
Ah, I actually have just streamed, ranted and first drafted (this post has taken much longer to write than to read.) And I already feel better. In short, being a partner to someone who has just been diagnosed with MS, or just being diagnosed with MS, doesn't mean there are any 'get out of jail free' cards. Real life still happens, including the parts that make you (or your partner) pancake mad.
December 8, 2008
Avonex Becomes a Member of the Family, Day 1
Matty started his MS medication this afternoon. A nurse came to the house, compliments of Avonex, and she was great. Expensive meds sure have their perks. The shot is an IM (intra-muscular) that's self administered weekly. It seems Matty's feeling better (emotionally) than he has been the past couple of days. The reality of MS, or being diagnosed with MS, started to set in late last week, and he had a rather sad weekend. The fact that he was going to have to give himself an injection, and that injection would likely have flu like side effects (at least) did not help calm his fears.
The reality kicking in for him affected me too - you can't not be affected when someone you love, your family, your partner, has such a heavy mind and heart. I wished, and still do, that I could take this from him - that I could lift the weight he was feeling, and will no doubt feel at times in the future. I want to be able to suck it out of him like poison from a snake bite. I want to have more control than I do. I'm willing to bet large that control, or lack thereof, will be one of my biggest challenges, one of my biggest lessons. That's ok. I'm ready.
Mary was real, she was happy, she was encouraging and she wasn't full of shit. Matty successfully shot himself up for the first time (he will likely have to do this once a week for at least a year and possibly for the rest of his life. An oral medication for MS is set to come out next year, but who knows if it will be the right stuff.) Anyhow, the most common side effect, and the one that Matty was most worried about, is flu-like symptoms in the 24 or so hours after medication. This should go away after some time - no one can say how long; weeks, months - in unlucky and rare cases the side effects can last for years. Happy Holidays. Mary said that symptoms generally start between 2-6 hours, but in her experience the 5 hour mark seems to be the 'sweet spot' for lack of a better term. Go figure, it's ben just over 5 hours since his shot, and Matty is feeling achy. He also seems to be feeling very positive, and on his blog listed his mood as peaceful. I am overjoyed given his worries etc. over the weekend. So there's ibuprofen and nyquil and lots of fluids, and hopefully he'll sleep through the symptoms and be ready to go tomorrow. If not, he can hang w/ Basil on the couch and drink tea tomorrow. Either way, he'll be fine - we both know this and it feels nice.
The reality kicking in for him affected me too - you can't not be affected when someone you love, your family, your partner, has such a heavy mind and heart. I wished, and still do, that I could take this from him - that I could lift the weight he was feeling, and will no doubt feel at times in the future. I want to be able to suck it out of him like poison from a snake bite. I want to have more control than I do. I'm willing to bet large that control, or lack thereof, will be one of my biggest challenges, one of my biggest lessons. That's ok. I'm ready.
Mary was real, she was happy, she was encouraging and she wasn't full of shit. Matty successfully shot himself up for the first time (he will likely have to do this once a week for at least a year and possibly for the rest of his life. An oral medication for MS is set to come out next year, but who knows if it will be the right stuff.) Anyhow, the most common side effect, and the one that Matty was most worried about, is flu-like symptoms in the 24 or so hours after medication. This should go away after some time - no one can say how long; weeks, months - in unlucky and rare cases the side effects can last for years. Happy Holidays. Mary said that symptoms generally start between 2-6 hours, but in her experience the 5 hour mark seems to be the 'sweet spot' for lack of a better term. Go figure, it's ben just over 5 hours since his shot, and Matty is feeling achy. He also seems to be feeling very positive, and on his blog listed his mood as peaceful. I am overjoyed given his worries etc. over the weekend. So there's ibuprofen and nyquil and lots of fluids, and hopefully he'll sleep through the symptoms and be ready to go tomorrow. If not, he can hang w/ Basil on the couch and drink tea tomorrow. Either way, he'll be fine - we both know this and it feels nice.
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