Wednesday, August 24, 2011

A difficult blog to write...

Last October, when I had to go on insulin, I asked my endocrinologist [for my diabetes only] if I could go on estrogen. He sent me to an Everett Clinic hematologist who ran like $3500 worth of labs on me to determine why I had blood clots before and if it would be likely I would get them again if I was on estrogen. Most of my blood tests came back clean. We discovered that I am heterozygous [the only way I am hetero] for a gene that promotes clots in the veins or Deep Vein Thrombosis [DVT's]. That means that of two genes that I could have that would increase the likelihood of DVT's I only have one. That translates to a increase of 2-8 times the probability of DVT's compared to people who don't have this gene. The hematologist was not concerned about this and any estrogen therapy I might start. She was concerned about an indication of particular antibodies that can cause blood clots in the heart which are much more likely to travel to the brain and cause strokes. Antibodies can go away. We tentatively scheduled a retest for the Spring of 2011. I have no medical insurance and a lot of my health issues took a hit this year to save dollars; this test was one of those things that got put off. August 10th [my Mom's birthday] I went in for my lab draw for this antigen test. I was told it would be 3 to 5 days before the labs came back.

The weekend of the 13th, my 2nd Daughter and I went to Leavenworth, Washington to have some time just us and get away from a lot of the things we'd been busy with at home. We had a fabulous time! In the middle of all this, I haven't been sleeping really well and when I would wake up at night, one thing I do is check my email on my smart phone. Sunday morning, I saw that the labs had been posted. I looked at them and wasn't really sure what they said. Back to trying to sleep. Around 4, I woke up again, checked my email again, and checked my labs one more time. I was pretty sure I understood what was there and again went back to sleep. I'd tell my daughter in the morning, before I said anything to anybody else. I was ok. No big deal. I knew this was a possibility.

I got up and cleaned up and waited for Sleeping Beauty [or is it Rapunzel?]. She was up and got her shower and was getting ready for the day when I stuck my face in and told her the labs were back. She had a concerned look on her face and I told her, "I can't go on estrogen, the labs were positive."

She said, "I'm sorry, momma."

I replied, "Doesn't change the woman I am. I've been post-menopausal for a year and a half. Doesn't make me any less your mom."

"No, it doesn't."

Have I said that I love this child?

So I let her get back to making herself pretty [which is as redundant a statement as I can think of] and I go and sit down on the bed.

And started to choke up.

And I started to sob.

The things my heart doesn't tell my head …

As I am weeping for my loss, these strong, warm, loving arms wrap me up and and her head lays on my shoulder and she holds me like I'll die if she doesn't. And she let me sob my heart out.

I didn't know …

I really did not know how much I had hoped to go on the estrogen!

I had no idea how much that hope meant to me!

And it was gone …

On Monday, I called the hematologist to confirm what I read in the labs. She told me she really, Really, REALLY could not recommend I go on estrogen therapy! She did tell me if I decided to go on estrogen therapy, she would Insist! I go on the blood thinner, coumadin. I knew beforehand coumadin therapy would not be a guarantee that I wouldn't have clots and has it's own problems. She left it up to me.

It is surprising how painful no-brainer decisions can be.

I knew that Sunday when I told my daughter that I couldn't go on estrogen that I would have to blog this. I have so many friends pulling for me wanting to know how things have gone. I would have to say something! But it has taken me ten days! to get to a place where I can write about it. And even now my eyes are brimming with my tears. Hope dies hard!

I am a 58-year-old, post-menopausal woman. I will not be dieing to have my estrogen. I can _live_ with this. But it hurts.

Saturday, August 6, 2011

A Tangible Step...

The consultation with Dr. Meltzer went very, Very well.

Once I got there.

No one at the conference knew anything about any consultations that Dr. Meltzer might or might not be doing. This was actually a good thing for my nerves. I could get a little miffed at the snafu. Eventually, the Gender Odyssey people told me that Dr. Meltzer was doing consultations at his hotel. By the time I got to his hotel [a couple of blocks away so no big deal] my nerves were a little jangled again. I call and am told to come up to the floor and they'll call me when they're ready. So, I'm just about to settle in to this incredibly plush chair and continue reading my nook [A Game of Thrones] when a woman opens a door and calls my name.

I go in and there are two women working at lap tops at the desk and a third woman who gets up and greets me. Then I'm introduced to Dr. Meltzer. He is a very pleasant presence and I am put at ease right away. We sit down and tell him a bit about what I'm thinking and my concerns about my blood clots and my diabetes. I tell him that my PCP feels my diabetes will not be an issue when I get my A1c under 8 and that my clots aren't an issue either. He tells me under 8 is a good idea and that for patients with a history of clots he keeps them on a low dose of heparin for longer after the surgery. He hasn't had a patient with clots after surgery for years. He is very, very easy to talk to. His staff seemed extremely efficient. They had a package ready for me before I left and I will get an email package later in the week.

And it was over.

I was not nervous at all when I was talking to him. But going back down the elevator my feelings came back full force. Not from being anxious, but from relief and hope and joy and a positive expectation. Had I been at home instead of the lobby of a posh hotel, I would have come unglued and sobbed my heart out. Sometimes I am as surprised as I can be to find I have been keeping feelings under lock-and-key, hidden away from even myself. Before the consultation, I would have told you that GCS was something I wanted but I would have said from a logical point-of-view that I can live without it, just fine! And I would have believed my own words. After today, I know how much I want this. I know how much I need to be right in my body. I need the confirmation of this surgery. There is still a strong yearning? an ache? in my breast from the consultation and the hope I now have.