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

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

Update on Claire

Just a quick update.

We got the news last night that the mass on Claire's x-ray is not in her lungs.

*deep, deep sigh of relief*

She has what is called a teratoma. About 85-90% of these are benign. However, it has to come out.

Claire has struggled her whole life with severe phobias about doctor related things. It takes xanax and a couple of days to prepare for a blood test, so this is obviously really overwhelming for her. Although I am thrilled at the news that it isn't lung involved, she's way too stressed about the idea of an operation to really feel relief at this point.

I'll keep you posted.

Annie

It snowed.

I woke up to lovely gift this morning. It snowed, and it's enough to leave snow on the ground and the car. Gives the world kind of a calming, peaceful look this morning. I think I needed it.

We're hanging in there. I feel like I'm finally kicking the pneumonia, and getting to a solid, grounded place in which I can support Claire this week.

Primal scream therapy in your car on a deserted stretch of road is amazing.

I talked to my mom, a breast cancer survivor, for 20 minutes Monday night, and she kicked me into fighting and staying strong.

Practicing "walking meditation" is starting to come back under my control. I can't quite get myself to believe my normal mantra learned from Thich Nhat Hahn. I have changed the last line to be "This is the only moment".

Breathing in, I calm my body.
Breathing out, I smile.
Dwelling in the present moment,
I know this is a wonderful moment!

I'd like to thank everyone that has loaded us down with thoughts and prayers. It's making a difference knowing we're not alone as we play this awful waiting game.

Love,

Annie

And the world comes tumbling down.

I worked myself into exhaustion a week ago, while I had the flu. Worked around the clock on a project to the point where I gave myself pneumonia. Now I'm glad I had it.

Yesterday, I took Claire in because she's been sick too. Having bacterial pneumonia, I wanted to make sure they she didn't get it while down with the flu. The doctor took a routine chest x-ray, and my world has been upended since that moment.

See, there was something on the x-ray. Not pneumonia, but a mass in the upper lobe of her right lung. One that looks pretty scary. The doctor sent the film to a radiologist, and called last night to tell us that the radiologist said it looked like a mass that needs an immediate CT scan.

Apparently the shoulder pain that the Savannah orthopedic surgeon dismissed as cubital tunnel syndrome might have been this.

We were supposed to have a CT scan today. However, between Claire being pretty ill with the flu, having the shock of this hit us, and the fact that she would need an iodine injection with a severe anxiety issue about needles made us postpone it.

So, until Friday, we're in the dark. All alone with this specter over our heads.

We've called my folks, and told our best friends. We've both cried, and tried to be brave. The next few days will be really hard, and I know it.

I still have hope in my heart that Friday's CT Scan will leave us walking away breathing a sigh of relief that it was scar tissue, or other anomoly.

All I know right now is that I'm scared, and she's scared. Prayers, good thoughts, etc. are welcome. We'll make it through this; I know we will.

In the meantime, Claire insists that this will be a piece of cake to get through, since she has already survived 36 years stuck in the wrong body.

Annie

A Valentine's Card to my Claire

Claire,

This is the first Valentine's Day since you started living full time in your proper gender.

I look back on everything we've gone through and am amazed at so many things.

I am amazed at the depths to which I've seen you plunge into depression, and the highs I've seen you reach now that you are battling all those demons that plagued you all your life.

I am amazed at the openness with which my family received your news, and the embrace they've drawn you into since they learned they had a new daughter instead of a son.

I am amazed at how we've coped, and loved, and adapted, and grown into better people, both of us.

I am amazed at the physical changes brought on by hormone therapy. You're beautiful, and you really certainly don't look like the James I met 7 years ago.

I am amazed at how smooth a transition it was to uproot ourselves and move to Atlanta, and how friendly Atlanta is.

But mostly...

I am amazed at how strong our love is, and how simply overwhelming it is to me. I think of you always, in the back of my mind while I work, play, make jewelry, and even sleep. Random thoughts of you will filter into my head, and I can't suppress the little smile that makes me actually feel my eyes twinkle.

I love you with all my heart and soul. Will you be my Valentine?

Love,

Your Annie.

It's snowing in Atlanta :)

What a cool couple of weeks. We bought a nice new bed, Claire had her Spiro doubled, and tonight it's snowing.

This poor little gardenia is pretty darn cold.

I played and left a message for Claire while I was out with the puppies. That's a paw print from one of our shepherds to the left of the word Claire. Totally by accident but looked really cool. Shh, don't tell Claire I didn't plan it that way.

Not much else to tell this week. Been really busy - doing another big project at work that will be over Tuesday, and been working on my metalsmithing business. Good stuff, that metalsmithing.

Have a great rest of the week everyone! Oh, and a special shout-out to my buddies Brian and Frances back home. Miss you guys.

Annie