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