Welcome to my wonderful, terrible, soap opera sit-com world.
Saturday, March 15, 2008
I haven't written very much about everything that's gone on. I'll write a little now. Maybe it will help me clear my head.First, thank you all for your kind wishes.
When I came out, we had CT and MRI scans of my mother's liver that showed something "suggestive of metastatic disease." Metastatic disease is a less-powerful way of saying cancer that starts somewhere else in your body, but spreads to somewhere else. In this case, it was her liver.
My mom had been fighting various medical problems for a little while, and the main one was she was having some irritable bowel symptoms and a lot of diarrhea. She had a hernia repair surgery (emergency surgery) on 12/6/07 and the doctors' answer to the "I have diarrhea and it won't go away" was initially that when you have GI or bowel surgery, diarrhea is a side effect of recovery. So they asked her to wait a week and then come back. She waited two.
They saw her again and thought maybe she had an infection in her bowel after the surgery, and that could be causing the diarrhea. So they gave her ten days worth of antibiotics and asked her to come back after the antibiotics were gone.
She still had diarrhea. By the time she saw the doctor on January 21, she essentially camped out in his office until she could be seen because her diarrhea was every 90 minutes and she couldn't sleep through the night with it. He felt her abdomen and referred her for a CT scan.
On 1/23 the CT scan showed metastatic disease. An MRI two days later showed the same. The tumor was big. Really big. I told her I was coming. She said, "Don't you get on that fucking plane." I said, "Look here lady, my plane lands at 8am, and I will be in the driveway at 9am, so you better have your dancing shoes on 'cuz we're going to boogie." She said, "Then you better be prepared. I'm not doing very well. I've lost 25 pounds, and I'm too weak to make up the hide-a-bed in the guest room."
"I can make the bed," I said.
"I can't get the pots and pans out from under the counter to cook."
"I can cook for you," I said.
"I don't always understand what the doctors tell me."
"I'll understand and explain it to you," I said.
"Okay. Then come," she said.
While all of this was going on, the chasing of the symptoms after her surgery, one of the doctors had noticed that her thyroid seemed "a little enlarged." So they ordered a CT of her thyroid and she had scheduled a thyroidectomy because they just remove nodules when they get like that, especially in older people. She considered postponing the surgery because it seemed like it was secondary to everything else, but they encouraged her to "get it off her plate" so she didn't have to worry about it any more. They told her that even if it were thyroid cancer, it was probably not what was on the liver, because thyroid cancer "doesn't spread."
So on 1/31/08, she had a thyroidectomy. She wanted to drive herself to the hospital. She had, in the last week, had a brain scan (clean), and an abdominal X-ray (clean) and she and I had met her oncologist. We called him our Dr. House. He ordered a shit-ton of tests and assured us we were going to track down the cancer -- because you can't treat metastatic liver cancer without knowing where the cancer came from. Different kinds of cancer respond to different things.
The thyroidectomy came off without a hitch, and she went home the next day. We took walks around the block and she was going like a bat out of hell. "Mom, slow down," I said, "it's better if we walk a long way at a steady pace than a short way at a fast pace." She walked her bony little butt off wearing a compression neck brace and compression stockings, holding my hand as we went round and round the little neighborhood walking. Then two days later, she started slowing down.
We had a colonoscopy scheduled the following Wednesday. She had to fast for the thyroid surgery - then she had to fast a few days later for the colonoscopy. They didn't find any tumors. We didn't know what to think. The oncologist seemed convinced we were going to find a colon cancer tumor in her bowel, but there was no such thing. The oncologist scheduled a liver biopsy for the following Friday - two days later. She had to fast again for that. We had the biopsy on 2/8.
On Monday, 2/11, my birthday, we went to see the thyroid surgeon so he could take out her stitches. We walked in and my mother said, "Dr. H----, I want you to know that all this, me moving around so slow, and me having so much trouble doing things, this isn't because of what you did."
"Actually, I think it's related," he said. He told us that my mom had a very rare kind of thyroid cancer, called MEDULLARY THYROID CANCER. Of all cancer in the U.S., thyroid cancers are 1% of all malignancies. Of those 1% of all malignancies, 2% of those are medullary thyroid cancer. And it spreads. "I think that's what's on your liver," he said. "The oncologist will be giving you a call."
When the oncologist did call that day, he spoke to me directly. "Your mother has a very rare condition. Her liver is massive. And she has medullary thyroid cancer metastatic to her liver. Conventional therapy would be doing you an injustice. I am trying to find a doctor in Phoenix that can try to get her into some cutting-edge therapy or a clinical trial," he said. That's how we met Dr. G-----. We called my sister. She came out right away.
The following Friday, my mother had slowed down substantially. She didn't want to get off the couch or out of bed. She refused to eat. She was significantly confused. She couldn't hold a conversation with you, and acted very, very sleepy and tired all the time. We took her to our appointment that day with Dr. G-----, one of the foremost research oncologists in the country, who took our case. He told us there was a special medicine - just out of clinical trials - that had shown to help medullary thyroid cancer. And he said he thought she'd be a candidate for the medicine.
Saturday, we had to admit my mother because her lethargy and confusion had reached an all time high. We took her to the emergency room under Dr. G----'s guidance and she was admitted. Her blood ammonia levels were 170. Normal blood ammonia levels are 5-20. She was being poisoned by ammonia in her blood because her liver was starting to fail.
To shorten a very long story, my mom spent the last two weeks in the hospital taking laxative medicine to try to lower her ammonia (that's the treatment, poop it out) and she would bounce back to being lucid from day to day, sometimes only awake enough to say hi to us and tell us she loved us, but sometimes able to have enriching conversations. She fought. She fought and fought and fought. She did everything the doctors told her to do. She did things no human being should have to do. She was poked and prodded and submitted to so many tests. My sister and I had to work 12-15 hours a day at the hospital helping to take care of my mom because the medicine made her poop so much the nurses couldn't keep up -- so we would clean her up, change her bed pans, try to feed her, keep her hydrated, we did everything but administer her medicine. She was taking the cancer medicine from Dr. G-----, and her cancer wasn't getting any bigger -- but we were just too late.
One day I showed up to the hospital and she was unresponsive. I called my sister, who had temporarily gone home to be with her family and children, and told her I thought she needed to come back. I called my husband and told him I thought he needed to come out and be with me, because I could feel what was happening. My sister and her family came immediately, my husband followed closely behind.
On 3/3/08, they told us that her ammonia levels just weren't going to be able to stay down and they were in fact going up despite everything we were doing. My mother sat up and listened as the doctor told us that she would have no quality of life and that the cancer had swallowed up 90% of her liver. The remaining 10% was starting to fail. The cancer was inoperable, and incurable, and there was nothing else they could do for her. They asked us to let her go.
My mother had blessed us with the gift of a living will so that decision wasn't ours to make. She had already made it. Having a terminal condition that wasn't going to get any better with no improvement in quality of life meant the only choice was to discontinue my mom's medicine. We knew it would draw her into a hepatic encephalopathy coma. And that she would die.
Monday night we talked to her, told her what we were doing, and stopped the medication. She told us she loved us, and we told her she didn't have to fight for us any more. That she could let go.
Tuesday we had a day with just us family and her closest friends around her as she slipped in and out of consciousness, in an unresponsive state. We talked to her, did her hair, gave her massages and rubbed lotion into her dry skin, and told her how much we loved her. Last night, we left for the night at 1am and told her if God came for her, she didn't have to make him go around the block or anything -- that she could go with him. And that we would be okay.
On 3/5/08 at 8:45am, God stopped by to see her and she went with him.
Call your parents. Tell them how much you love them. Understand that every day with them is a blessing. If a doctor ever tells you to come back in a week, don't listen to them. If you aren't well and you know you aren't well, you fight and fight to do everything you can do to get diagnosed.
And if you are ever in the position that I was put in, to give someone the blessing of peace, to relieve them of their suffering, and to encourage them to move on to whatever comes next -- know in your heart that you are doing the right thing. You are giving them a gift. You are freeing them. Give them the gift of peace.
-+-+-+-+-+-+-+-+-
My job as a military wife is
to make it as easy as possible
for my beloved husband to do his job.
Where he leads, I will follow.
Name: Rose
Age: 36
Religion: Pagan
Husband: SSgt, USAF
Current Location: Tinker AFB, OK
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