Last Sunday I posted a diary, Where I've been & why I have to cancel March NEK meet up.
In the diary I was rather vague about all that is going on.
Then yesterday after I saw my GYN I emailed family and friends a letter telling them what was going on. When Nurse Kelley read it she emailed back:
OMFG! What are you trying to do, re-write the "Book of Job?"
To which I replied "Yes, yes I am! It will now be known as the "Book of Clytemnestra."" ;-)
Kelley is all over the cardio angle and yes Kelley I will be calling today.
It was suggested by others that I post my letter since my last diary was a bit vague. So below the orange squiggy is the letter I sent to my parents, sister, bil, sil, children, cousins, niece and nephews, oldest friends, etc..
I have deleted a few aspects of the letter to keep it tighter and just because . . . . plus I have also changed the names of the people I am referring to with their relationship to me.
If I can't even make it to the Boston Kossack meet up, this is why.
Subject: An update OR it's all news to you ;-)
Hi everyone,
I’m sending out this one email to es’plain things. . . there are people/family members and friends asking for updates, etc. So here we go:
Background
Many of you know that for 11 years I was having terrible bleeding problems - and that was all solved with a procedure called a “uterine ablation.” (I wrote a diary about it here.)
But there still seemed to be a missing piece of the puzzle. That piece came last year (I wrote a diary about it here.) and I changed doctors. I now have a specialist GYN (in Boston) who deals with DES exposure.
From December 2012 to Yesterday
Things started to go south in December when I had a torrent that I haven’t had for years. [My husband] took me to our local ER because I didn't want to go to far (it was [midddle son's] birthday). The ER said to contact my GYN that next Monday and get an appointment since there was a possibility it was cancer (which there is an increased incidence of in women with DES exposure).
I saw my GYN, and a pap smear and endometrial biopsy was done and it was decided to do another hysteroscope and D&C (one was done at the time of the ablation). That was scheduled for the end of January. I had some chest pain in recovery and was kept a few hours longer.
Nothing was found on the hysteroscope (no polyps) and they got very little material in the D&C. This was strange as it was done around the end of my cycle.
Everything seemed to be fine until a week and a half later when the torrent began again. This produced even more questions – because this was really abnormal. My gyn wanted me in his office immediately [thankfully my neighbors drove me].
He examined me and then sent me immediately to the ER. I called [my husband] and he left work shortly there after.
Anyway, I was rehydrated, another biopsy was done and I was taken off all estroven and put on a very high dose of another hormone, Norethindrone. He said that a hysterectomy is very risky for me, not just because of my weight, but all my other surgeries and the chest pain after the hysteroscopy and D&C (they only had me sedated for that), etc.
The Norethindrone makes me feel like crap. It did stopped the bleeding BUT it also stops me from eating. It was (and is) doing a number on my stomach. If I eat I am in pain and then comes the gas and bloating. My doctor hoped that this would go away once my high dose regimen was over and I went to a lower dose. (It didn’t)
A few days later I saw my doctor. He said that the last biopsy showed my uterus was “granular (swelling) and disorganized.” Then he outlined the game plan. I was to stay on (and am still on) the Norethindrone, but at a lower dose.
He also wanted to put me on a drug that would put me in complete menopause NOW so we could avoid risky surgery. The drug would likely increase my weight and make me more prone to anger, etc.
After meeting with him I walked out to my car and texted [my husband] saying “You may want to divorce me before we enter the next circle of hell.” He called back and for the first time EVER expressed confidence in my doctor, his team/colleages.
So after I finished the very high dose of Norethindrone I went on the lower dose. It didn’t help with my stomach, I still felt like hell. While [Eldest son] was back here getting [his fiancee] settled (they are moving back piecemeal) he gave me a GS Thin Mint cookie. One cookie and I started burping.
I was so hungry and they tasted so good I didn’t care, I ate some more.
Then Sunday night Feb 24 the torrent started again. [My husband] drove me back up to Boston to Tufts Medical Center where my doctor is on staff. One of his associates saw me. After they gave me morphine for the pain and rehydrated me again we talked about what they feel is going on.
My body is telling them that there are polyps in my uterus, despite what the hysteroscope said. She felt that there must be an adhesion in my uterus that prevented them from seeing the “whole cavity” and therefore did not hit the “whole cavity” with the D&C. So one of the options would be to go back and do this all again but with an ultrasound too, to help guide the camera on the hysteroscope and the D&C (here after known as “the procedure”).
She also said that my iron was low, which even though I have iron deficient anemia, is strange because with the supplement I take it has always been okay. So I now take a double dose of iron. She also increase the Norethindrone to being exactly half of the highest dose I was given in the beginning of the month.
TODAY
I had an appointment with my GYN this morning.
Despite his arguing with Blue Cross Blue Shield, our health insurance company will not allow me to have the drug to completely shut down my system and put me in full menopause. Because I don’t have any of their two indicators … I forgot what one was but the other is FIBROIDS. And here I was, so happy that I had caught a break and didn’t have that.
I love how my health insurance company is coming between me and my doctor.
So now the most risky, and what was to be our last option, our “hail Mary,” a full hysterectomy, is now in the mix.
First however, we are going to try the less risky hysteroscope and D&C again. This time with an ultrasound and he may even do another ablation (I may have a paper thin, “see though” uterus when all this is done – LOL )
I am losing weight though. I have lost more in a month than they usually think is healthy – but there is not much that can be done about that. I do have 6 packs of Ensure to help.
I am having tinnitus (ringing in the ears) and major migraines now – this, plus the over all crappy, nauseated, sometimes dizzy, sleeplessness, can’t really eat because my insides feel like there is a civil war going on, are all side effects of the Norethindrone.
They will call me when they’ve set up a date for the next “procedure.”
If I have any more torrents I need to get to Tufts Medical Center immediately. (if they are flowing a 2 week schedule, that should be this Sunday)
I’m sorry I am not on my email much, not in a mood to talk much on the phone and am not on Facebook as much. Most often now I have my head stuck in a book (on my Kindle) because it’s quiet and I am either in bed or on the sofa.
Please understand. I'm not angry at or ignoring anyone - I just feel really bad right now. And sometimes phone calls come while I have a huge headache or while my ears are really ringing - so talking isn't something I really want to do.
So now you know . . . . . . . the rest of the story. ;-)
