I just had the love of my life collapse crying in my arms. This is so incredibly scary even for someone without severe panic attacks, I just can't even imagine how my beloved feels right now.
I think she's incredibly brave, and stronger than she thinks. My mom and daughter are ready to help her recover, and we'll be taking good care of her.
My heart, however, is breaking at the moment.
Thank you everyone, for helping support her. I'll keep you posted tomorrow. Surgery starts at 8:30 (eastern).
Love,
Annie
Tuesday, July 1, 2008
Saturday, June 28, 2008
Another day down
We had a nice day at the mall and then the farmer's market. Kind of took Claire's mind off things while she and kiddo tortured and harassed me into buying a pair of jeans.
$60!!!!! They couldn't even pick a pair on sale? I never, ever buy anything at retail. To make matters worse, they are Tommy Hilfiger, a brand I *swore* I would never, ever wear. Oh, I feel I just sold my soul to Macy's.
They were merciless. And what's more, kiddo took the receipt so I can't return them!
Luckily, I was able to dodge the Sephora makeover they planned...
Looks like Monday morning Claire not only gets bloodwork done, she also gets an EKG and will meet with the anesthesiologist to discuss what can be done to medicate Claire enough to let her squash her severe anxiety enough to actually get her there.
Not sure what the plan is tomorrow, right now seems like it will be a movie day at home.
Thanks for tuning in.
Annie
$60!!!!! They couldn't even pick a pair on sale? I never, ever buy anything at retail. To make matters worse, they are Tommy Hilfiger, a brand I *swore* I would never, ever wear. Oh, I feel I just sold my soul to Macy's.
They were merciless. And what's more, kiddo took the receipt so I can't return them!
Luckily, I was able to dodge the Sephora makeover they planned...
Looks like Monday morning Claire not only gets bloodwork done, she also gets an EKG and will meet with the anesthesiologist to discuss what can be done to medicate Claire enough to let her squash her severe anxiety enough to actually get her there.
Not sure what the plan is tomorrow, right now seems like it will be a movie day at home.
Thanks for tuning in.
Annie
Friday, June 27, 2008
Counting down...
Just a very brief update as we close in on surgery day.
Kiddo arrived home from Iraq last night. Claire's *really* starting to stress.
I'm getting into the mode of trying to get everything arranged - overseeing mom coming in, changing the car headlight for her, making sure Claire's questions are answered about stuff, getting a futon for kiddo to sleep on... which is strangely calming.
The dog has allergies bad now, so I have to work in a medicated shampoo for him this weekend too. Glad kiddo is here to help.
Annie
Kiddo arrived home from Iraq last night. Claire's *really* starting to stress.
I'm getting into the mode of trying to get everything arranged - overseeing mom coming in, changing the car headlight for her, making sure Claire's questions are answered about stuff, getting a futon for kiddo to sleep on... which is strangely calming.
The dog has allergies bad now, so I have to work in a medicated shampoo for him this weekend too. Glad kiddo is here to help.
Annie
Wednesday, June 25, 2008
July 2nd draws nigh.
Just a quick update.
Things are definitely careening at us pretty quickly now. As I write this, kiddo is in Germany, preparing to fly home. She'll be here tomorrow, for at least 6 weeks. Thanks to the Red Cross and her CO for getting her home for us.
Claire is hanging in there. She's quite calm, in a way, but I think she's drawing on years on suppressing emotions.
As for me, I'm hanging in there. My mom is coming up July 1st, and honestly, I'm glad she'll be here. Fearful thoughts keep trying to invade, but so far I'm keeping them at bay.
Annie
Things are definitely careening at us pretty quickly now. As I write this, kiddo is in Germany, preparing to fly home. She'll be here tomorrow, for at least 6 weeks. Thanks to the Red Cross and her CO for getting her home for us.
Claire is hanging in there. She's quite calm, in a way, but I think she's drawing on years on suppressing emotions.
As for me, I'm hanging in there. My mom is coming up July 1st, and honestly, I'm glad she'll be here. Fearful thoughts keep trying to invade, but so far I'm keeping them at bay.
Annie
Tuesday, May 13, 2008
The Big One... telling the best friend
Claire left her best friend behind in England 8 years ago. They had limited contact back and forth for 5 years or so, and then stopped.
Well, the best friend emailed the other day to see how his old mate was doing in America. He had noticed that some information about 'James' had been taken offline. Wanted to know what was up.
So, we talked and talked, and talked some more instead of sleeping that night. Decided to email him and tell him the story, and she tried to come to terms with the fact that the best friend she loved like a brother wouldn't laugh at her or attack her. It was a very scary thing, because these two were best mates for quite a long time.
With family already excommunicated, he was really her last happy tie to England.
The next day, she sent a long email off basically telling him she is a transwoman. For hours, we waited for a response back from England.
When it finally came, he said it didn't matter to him. He said he'd always thought that she was a bit effeminate, and laughed and said 'who knows, had you been born in the right body we might even be married today'. He then told her he always loved her like a brother, and now he'll love her as his sister.
He went on to say that he's apologizing in advance for screwing up and saying the wrong gender or name. In short, he confirmed that he is an wonderful friend and kind human being. It's only been a couple of days but his stance is that bodies don't matter, just what's inside.
I adore happy endings.
Peace and Love,
Annie
Well, the best friend emailed the other day to see how his old mate was doing in America. He had noticed that some information about 'James' had been taken offline. Wanted to know what was up.
So, we talked and talked, and talked some more instead of sleeping that night. Decided to email him and tell him the story, and she tried to come to terms with the fact that the best friend she loved like a brother wouldn't laugh at her or attack her. It was a very scary thing, because these two were best mates for quite a long time.
With family already excommunicated, he was really her last happy tie to England.
The next day, she sent a long email off basically telling him she is a transwoman. For hours, we waited for a response back from England.
When it finally came, he said it didn't matter to him. He said he'd always thought that she was a bit effeminate, and laughed and said 'who knows, had you been born in the right body we might even be married today'. He then told her he always loved her like a brother, and now he'll love her as his sister.
He went on to say that he's apologizing in advance for screwing up and saying the wrong gender or name. In short, he confirmed that he is an wonderful friend and kind human being. It's only been a couple of days but his stance is that bodies don't matter, just what's inside.
I adore happy endings.
Peace and Love,
Annie
Thursday, April 10, 2008
Of MRIs and Surgeons
We went for Claire's MRI yesterday. We chose MRI because it wouldn't involve contrast, and therefore no needles. Well, after an hour of MRI stuff ( they let me stay in there with her during it) they came in and said they needed a contrast agent. It was just a butterfly needle and although you could see the panic attack trying to happen, Claire fought it off and went with it. I'm so proud of her :)
On a funny note, a young tech asst was setting her up with earplugs and asked the MRI operator if "mom needed to be given a pair too?" The woman looked at the tech and said "That's not her MOM, that's her PARTNER" which made Claire and I bust out giggling. The poor young tech didn't GET it and called me her mom again later. I was glad it happened though, because Claire needed to giggle and relax a bit, and hey, I can take a joke ;)
Yesterday late afternoon the surgeon called and said it isn't vascular, so it's not the aorta. Big sigh of relief. His best guess right now (since this is not a normal presentation of any of the possibilities) is that she has a thymoma, cancer of the thymus gland. Most cases are non-invasive, so kind of classed as a benign issue, since surgery removes it completely. Because of the massive size (my god, the MRI pictures really put it in focus, this bastard takes up 1/3 of
her chest cavity on the right side) it is hard to read if anything else is affected, because it is pushing arteries and a lung out of the way. http://www.lifesteps.com/gm/Atoz/ency/thymoma.jsp
The type of surgery used for open heart will still be needed - split the sternum and open the ribs - and my poor phobic sweetheart is having a rough time. So, although the news isn't perfect, at least we're getting there.
Oh yeah, and the dog had to have emergency surgery Monday night. The dog is now fine and whiny as ever. Just like me. *grin*
Annie
On a funny note, a young tech asst was setting her up with earplugs and asked the MRI operator if "mom needed to be given a pair too?" The woman looked at the tech and said "That's not her MOM, that's her PARTNER" which made Claire and I bust out giggling. The poor young tech didn't GET it and called me her mom again later. I was glad it happened though, because Claire needed to giggle and relax a bit, and hey, I can take a joke ;)
Yesterday late afternoon the surgeon called and said it isn't vascular, so it's not the aorta. Big sigh of relief. His best guess right now (since this is not a normal presentation of any of the possibilities) is that she has a thymoma, cancer of the thymus gland. Most cases are non-invasive, so kind of classed as a benign issue, since surgery removes it completely. Because of the massive size (my god, the MRI pictures really put it in focus, this bastard takes up 1/3 of
her chest cavity on the right side) it is hard to read if anything else is affected, because it is pushing arteries and a lung out of the way. http://www.lifesteps.com/gm
The type of surgery used for open heart will still be needed - split the sternum and open the ribs - and my poor phobic sweetheart is having a rough time. So, although the news isn't perfect, at least we're getting there.
Oh yeah, and the dog had to have emergency surgery Monday night. The dog is now fine and whiny as ever. Just like me. *grin*
Annie
Thursday, April 3, 2008
Update on Claire's situation
I don't know how time flew so fast since my last post.
Claire has been taking Valium at doctor's request to help her break the grip that her anxiety had on her. He was concerned her adrenal system would wear completely down if she kept going the way she was. I agreed, and was glad when 5 days after he prescribed it she finally tried it. She's been on it around the clock (sort of, lighter dose during the day) and it seems to have helped.
I think it's really been the only thing that has kept her in check right now. Even then, there are days when she says things like "I'm just not going to do it" that make me want to scream. The doctor told her to nap during the day when she can and just try to relax a bit. She has been, and it seems to be helping. She doesn't look like hell anymore - the sunken eyes are gone and she's starting to look very healthy again.
Thank goodness she was working on starting up her photography thing instead of trying to hold down a regular job right now, because it is wearing on her tremendously. I know she feels bad sometimes because this phobia has such a hold on her, but the fact is that you can't really control a phobia. I understand this, and so does her doc.
I do wish she would TRY to meditate - but she dismisses it out of hand. She is a die hard pessimist and I am the opposite, and it has been really hard sometimes lately.
Anyway, fast forward to today's appointment.
We went in with questions planned like "how long will she be in the hospital" (5-6 days) and worries in our minds about mistreatment because she's pre-op and hasn't finished full facial hair removal (so she'll have hair growth while she's in there - and she's horrified at the thought). Thoughts of if we should put F or the dreaded M on the admission forms... since they will obviously be able to tell she has outdoor plumbing right now - having not done a remodeling job yet.
(side note: By the way, at least at this point, the hospital has been FANTASTIC about being sensitive to the trans issue. They have her in the system as F and said that anything else is "her personal business" and she will be addressed as Ms. Claire.)
We expected, with the radiologist's report, to have the surgeon say "yup, ok, here's the surgery date" and answer some basic questions.
Ha.
Did I say "ha" yet?
Of course, we got something we didn't expect. He looked at Claire's tall, lanky bod and said "We could have something completely different on our hands."
Apparently Claire fits all the physical body type characteristics of someone with Marfan's Syndrome. He said that he couldn't see a separation between her aorta and the tumor. He also disagreed with the radiologist's determination of teratoma, because teratomas don't normally occur as high as Claire's is, and Claire's tumor is completely rounded (more oval actually) it suggests growth of a liquid nature under pressure. This could be just fluid filled cyst or it could actually be an aortic pseudoaneurysm - something common to people with Marfan's. Obviously, cutting into something to biopsy it that is actually part of the aorta would be fatal, so the surgeon has requested that Claire get an MRI on Wednesday to see if there is blood flow in the tumor.
The tumor (or aneurysm) is the size of a small baking potato, 8cm x 6cm x 4.5cm.
If he can rule out the aortic connection, then Claire can just undergo a biopsy, and decide about full "open the ribs" surgery if needed - or she can skip the biopsy and decide to just have it removed (since it does cause her pain).
So, now we wait. Again.
We'll keep you posted.
Love,
Annie
Claire has been taking Valium at doctor's request to help her break the grip that her anxiety had on her. He was concerned her adrenal system would wear completely down if she kept going the way she was. I agreed, and was glad when 5 days after he prescribed it she finally tried it. She's been on it around the clock (sort of, lighter dose during the day) and it seems to have helped.
I think it's really been the only thing that has kept her in check right now. Even then, there are days when she says things like "I'm just not going to do it" that make me want to scream. The doctor told her to nap during the day when she can and just try to relax a bit. She has been, and it seems to be helping. She doesn't look like hell anymore - the sunken eyes are gone and she's starting to look very healthy again.
Thank goodness she was working on starting up her photography thing instead of trying to hold down a regular job right now, because it is wearing on her tremendously. I know she feels bad sometimes because this phobia has such a hold on her, but the fact is that you can't really control a phobia. I understand this, and so does her doc.
I do wish she would TRY to meditate - but she dismisses it out of hand. She is a die hard pessimist and I am the opposite, and it has been really hard sometimes lately.
Anyway, fast forward to today's appointment.
We went in with questions planned like "how long will she be in the hospital" (5-6 days) and worries in our minds about mistreatment because she's pre-op and hasn't finished full facial hair removal (so she'll have hair growth while she's in there - and she's horrified at the thought). Thoughts of if we should put F or the dreaded M on the admission forms... since they will obviously be able to tell she has outdoor plumbing right now - having not done a remodeling job yet.
(side note: By the way, at least at this point, the hospital has been FANTASTIC about being sensitive to the trans issue. They have her in the system as F and said that anything else is "her personal business" and she will be addressed as Ms. Claire.)
We expected, with the radiologist's report, to have the surgeon say "yup, ok, here's the surgery date" and answer some basic questions.
Ha.
Did I say "ha" yet?
Of course, we got something we didn't expect. He looked at Claire's tall, lanky bod and said "We could have something completely different on our hands."
Apparently Claire fits all the physical body type characteristics of someone with Marfan's Syndrome. He said that he couldn't see a separation between her aorta and the tumor. He also disagreed with the radiologist's determination of teratoma, because teratomas don't normally occur as high as Claire's is, and Claire's tumor is completely rounded (more oval actually) it suggests growth of a liquid nature under pressure. This could be just fluid filled cyst or it could actually be an aortic pseudoaneurysm - something common to people with Marfan's. Obviously, cutting into something to biopsy it that is actually part of the aorta would be fatal, so the surgeon has requested that Claire get an MRI on Wednesday to see if there is blood flow in the tumor.
The tumor (or aneurysm) is the size of a small baking potato, 8cm x 6cm x 4.5cm.
If he can rule out the aortic connection, then Claire can just undergo a biopsy, and decide about full "open the ribs" surgery if needed - or she can skip the biopsy and decide to just have it removed (since it does cause her pain).
So, now we wait. Again.
We'll keep you posted.
Love,
Annie
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