Tuesday, July 23, 2019

I am a ticking time bomb

lots of leopard lilies now

we have had three impressive storms. One causing us to lose power for more than 24 hours when it was 98 degrees No water on that day too as our well has an electric pump This was right before the 60 mph winds hit. Everything was blown down

later

A few days before torrential rains hit causing Shanna's neighborhood to flood. Their car was wrecked when they tried to drive through this

Me and an ever suspicious Hannah

this silly thing kept jumping into my pond and was found three times floating on my fake lily

flowers

and more flowers

hostas in bloom

Today this time bomb will be partially defused. I will go to the hospital shortly and have my ovaries and tubes removed as this nasty gene I recently discovered I have puts me at high risk for ovarian cancer. A particularly scary cancer as it has no symptoms until it is too late though I have been imaging symptoms ever since I learned of this. Aside from the slicing and dicing, they will look inside for anything suspicious and also biopsy everything they remove. I am also at high risk for breast cancer, no credit for having it already but my treatment would have been different HAD I KNOWN!!!! but I am aging out of the risk, I hope. Also I am being screened reularly. Other cancers I am on the hook for, though at a lesser degree, are pancreatic and melanoma.

I scheduled this surgery 4 months ago giving me plenty of time to get authorization from the insurance. What a nightmare that was. Denials, sending forms over and over again, numerous calls to incompetent people. I finally got an authorization via automated phone call a month ago. I naively assumed that they would send a written copy. Didn't happen. Finally less than 24 hours before the surgery, the hospital called them wondering where the authorization was and they were told the whole procedure was denied. I thought I would have to cancel. Four straight hours on the phone yesterday resulted in the  authorization. They had no record of the authorization previously given me or the phone calls, despite me giving them the exact time and dates. The surgical office spent an hour on the phone too. Do not use Humana!!!!!!! Meanwhile I was supposed to visit my friend which probably will be for the last time as her condition is quite dire and I will be immobile in the short term.

How did I get a gene that only 1 in 800 Northern Europeans get? Jewish people get some version 2.5% of the time. I was not tested even though I had a cancer consistent with the gene, as I was thought to be too old and didn't have a strong enough family history to warrant the test. They have since changed the guidelines so I was tested. I have found my gene. It is a founder gene in Norwegians. How Norwegian am I? 3% according to ancestry.com. I am assuming I got it from my mom who had breast cancer though not the super aggressive kind I had and so did her sister. I did have a cousin who died young of a probable gene induced cancer. I felt I owed it to my relatives to warn them. One cousin who I was especially friendly with, will no longer speak to me. They do shoot the messenger.I did get a hold of the widow of my cousin to urge her to have their children tested. She said she would send me the results. Didn't happen but at least she responnded. I have sent several letters and messages to the sister of my dead cousin. No acknowlegement. Another cousin, who is probably the least at risk pretended not to read my message but she is still friendly.

This gene is autosomal dominant so each of my children have a 50% of getting it. All I will say that they didn't all get away scot free which breaks my heart. Although gene carriers are not to be discriminated by the Obamacare, this can change in a heartbeat with the orange turnip brain around.

I do go to meetings of fellow gene carriers. I am the oldest by far but the younger one is, the more risks and decisions that  have to made .  The worst is knowing before you had your kids. And if you are having kid, theoretically you can preselect gene mutation free embroyos, which some consider. And people not wanting to know their gene status despite it potentially saving their life is really common. Part of me gets that. I was floating through life fairly happily until I learned this.

Iceland is a small country founded by a few Danes. One of them was a gene carrier and so the prevalence of that cancer  is relatively high in that country. The health service wants to test everyone but some are suing for 'the right not to know' even though it could save their life.

I am very nervous now. I don't like being in pain, being immobile and potentially finding out they found something.

1 comment:

Elephant's Child said...

Good luck.
I really, really hope that you have dodging this particular bullet - though the treatment is scary in itself.

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