I guess I have put it off long enough. I will now reveal to you all what has been going on. I caved to the multiple calls and emails politely asking, "Are you okay? Haven't heard from you and I'm worried." or just those of you that are brazen enough to write, "What the fuck is up?"
I had a MRI of the right hip/pelvis/femur 2 weeks ago and the bone mets have woken up and are back in action. My CA 27-29 took a 40 point jump and my oncologist said maybe that the spike in tumor markers coupled with my pain was probably indicative of new activity. The pain in my hip has become unbearable. I can barely walk and simple things like getting in the car, getting in and out of bed and stairs send me through the roof with pain. I am already on round-the-clock sustained release pain killers and have had to take more meds than ever for breakthrough pain.
My extremely aggressive cancer it acting extremely aggressive again. I had a Breast MRI and Mammogram last week. Two new tumors in the left breast. The right one, for the time being is clear.
I got in to see the Endocrinologist about my elevated estrogen and high DHEA levels and she told me that she had never seen anything like this. She was my kind of clinician. To the point, friendly and to wrap up my appointment she said she needed to go, so she could start looking at my films. I like someone who makes me feel like she is on it. She said when and if we get to the bottom of this medical mystery (she didn't bite at my 3rd ovary theory) she will have to write a paper for submission BECAUSE IT IS SO STRANGE! Freaks & Geeks on the Discovery channel here I come! She has some ideas about what it might be:
1. Adrenal hyperplasia
2. An estrogen secreting tumor on the adrenal glands
3. Some ovarian tissue that was left after hysterectomy
I asked if the adrenal glands can be removed and apparently one can have an adrenalectomy. There is a local surgeon that does the procedure. Problem is that the adrenal glands secrete "life necessary" (her words) hormones like cortisol. So, if I had the adrenals taken out it could potentially cause a whole host of endocrine related problems and I would have to take supplemental hormones for the rest of my life. This is not an attractive option to me.
She also said that a round of chemo might be prudent. Even though the endocrinologist, my gynecologist and my oncologist don't know what it is that is elevating the estrogen and DHEA levels it is clear that the cancer is feeding off the estrogen and causing growth.
Matt and I saw Dr. K today and he said that he could see it in my face that I am in agony. He said because I don't complain about pain this must be serious. He said I can't live in pain like this. It is probably not helping to contain the cancer spread if I am constantly in pain. I am off to get the hip radiated next week. I am fine with this because it should help within 2-3 weeks and apparently the side effects are minimal.
Then he said that I should probably prepare myself for some "tame" chemo. He doesn't know what kind yet and won't until he chats with the endocrinologist but it might start in May. It feels like everyone is looking to chemo to sort of interrupt the process or just kill it. It will work, of this I am certain.
So for now I am a little cranky and a little scared and a little angry. I hate these times when I am supposed to be accepting my "new normal." My "new normal" sucks. I want my "old normal" back.
I know that you are all out there rooting for us, praying for us and just waiting for something you can do. Don't worry we will be calling on friends/family soon. I am trying to get a lot of rest and have good pain control. Matt is displaying his rock solid command of the home and work front. He is busy preparing for what the future holds for our family. We will know more after Thursday when we meet with the radiation doctor.
So for now please no calls. Emails and texts are cool. We need to talk to the girls first.
Saturday, March 28, 2009
Estrogen is crack & cancer is a junkie.
Labels:
CA 27-29,
cancer growth,
chemo,
family,
pain,
planning for the future,
radiation
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3 comments:
Meesh,
I read your story. I watched your video. You touched my heart. You have made a difference. You will continue to. I am here for you you. I would like to come and visit in the next two week.
xo apes
Ok, so this is the other April. I think of you daily and am not sure how to best help. I don't want to be in the way or make you feel like a spectacle. I want to do what ever I can to be what ever kind of friend you need right now. Just let me know, and I'm here.
Love you.
Hi Meesh,
Hang in there. Keep the faith. You're an amazing woman and I love you.
I hope to see you when I'm back in town later this month. Give the girls and a big hug and kiss from me and call anytime - I'm on my cell.
With much love and prayers,
Your "cousin" and friend - Ellen
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