Mar 09, 2012 - 3:42 am
16 months ago I moved across country to be with Michelle, the woman I love. We met at a wedding, did the long distance thing for a while and the decided that life is to short, and moved the 3000 miles so we could be together. We had a lot of fun the first few months, but she seemed to get so tired. Allergies, a cold, Just need a good night sleep we said. She begun to have some pain, and when it didn't subside she had a colonoscapy. 4 months after my arrival, just about 12 months ago now, she was diagnosed with Stage III-c Colo-rectal cancer.
You can't help but to look at survival rates, even though you know that there are new treatments, and that the numbers don't account for that, and that the statistics are essentially meaningless on an individual scale. Still, and night, when those demons come and whisper in your ear, it's those numbers that dance behind your eyes.
I thought I knew what to expect. My mother had a a battle with Lymphoma a little over a year before my move (Truthfully, the idea that none of us live forever was part of my motivation for the move. We only have so many days, spend them with people you love.) The chemo had been miserable for her, and both she and my father had some moments of despair, but when the smoke cleared she was (and is) still standing.
Michelle's battle is very different. Before the treatment began the tumor was growing. As it grew it pushed on a number of nerve endings. It started as soreness, and built to agony. 40 MG of Oxycontin a day, and two 5-325 Percocet every 4 hours didn't so much stop the pain as much as make her sleep until about 20 minutes before the next dosage was due. I would set an alarm on my phone every 4 hours so if I was asleep I would wake up and make sure she got the pain killers. If I didn't she would wake up screaming. Once the pain gets ahead of you, it's harder to get ahead of it again. Fortunately she responded well to the chemo, and a few days after the first treatment the pain had subsided quite a bit.
The chemo was much more aggressive than my mother's. She had to go in every week, and then wear a bottle that continued to infuse the chemicals for two days after. My mother's hair had fallen out all at once. Michelle's came out in stands and clumps over the weeks. Somehow, that was harder. In darker moments she will apologize, and tell me it's OK if I leave, and go back to the West coast. Three. thousand. miles. I love this woman enough to move that far from the only home I'd ever known, I am not leaving.
The radiation came next. As bad as I thought the chemo was this was worse. You see, for this there was chemo AND radiation. She got no break from the chemo this time. She had to wear a pump 24 hours a day, seven days a week. Her hair, which had filled back in all short and curly between the treatments did not fall out this time, This pleased her quite a bit. The pump not so much. It was summer, and hotter than hell. I'm not used to the East Coast humidity. the pump made showers difficult for her, but we worked it out. The radiation was something else. As I said, it is Colo-rectal cancer. you don't think about it, but radiation moves through things, and the location of the tumor meant she had some burns in some very sensitive places. The pain was bad, but not as bad as before the treatments started. Still it was a great relief when that round ended.
The colon resection was scheduled for Halloween. We both felt some relief going into it. This was the last nasty bit. She even wore a pirate hat and an eye patch when she checked into the hospital. The nurses were quite amused, as was I. The surgery was nearly 12 hours long. Myself and her Michelle's mother were the last ones in the waiting room. the surgeon showed up and it had all gone well, that they had been able to get all of the tumor, and that, thought he'd have to wait for the biopsies, he felt it looked good. The biopsies would bac up his gut instinct. They let me in the recovery room shortly before midnight. She looked waxy and beat. "It hurts she said." And then recognized me and smiled. I went home and slept deep and dreamless.
Recovery went OK. After a week in the hospital, she could walk well enough to get around the apartment and function well enough to eat, sleep, etc. and they sent her home. She has an ileostomy, but it's temporary, and we learned to deal (not to say it is without trouble. I think sometimes it is the thing that bothers her most) About a week after she got home we had a where I made popcorn, and we watched a Mythbusters marathon together on the couch. She fell asleep leaning against me. i knew things were going to be OK.
Except they weren't. After that every day she was in more pain. it would build and build. We'd call the doctors and they'd say "well, you did have major surgery..." and at first we would sort of look at each other and go along with that. But it got worse. So we went in, and the doctors said, "Major surgery..." And I would push and say shouldn't things get better? Not worse? but they would sort of shrug and say everyone is different. Soon I was setting the alarm on my phone to make sure she got pain killers. She could barely stand. She got dehydrated, and started to hallucinate from the dehydration (she was sleeping 23 hours a day, and would not drink or eat) and pain killers. She would ask me who was there, and the scream at me when I told here there was no one in the apartment, but me and her. For four days she lay in the hospital bed alternating between screaming, crying, and passed out. I called the doctors, and they admitted her tot he hospital. Ever night they would say they were going to do a CAT scan that night, and when I returned in the morning I'd be told they changed their mind and didn't think it was necessary. That the pain was from the dehydration. One of the older nurses became upset. She agreed with me. This wasn't right. I over heard her talking very sternly to one of the doctors, and they finally did a CAT scan. There was an abscess where the tumor had been. It was pushing on those same nerve endings, and causing the same level of pain. A few days after draining the abscess, she was doing a lot better. With some physical rehab she was home by Christmas, and we had our nice little Christmas with a few little goof gifts to exchange, hot coco, and A Charlie Brown Christmas.
And for a while everything seemed OK. She even started working again (albeit in a limited capacity). But pain returned and she felt sick. and while it was nowhere near as bad as before, it is here that something clicked in her. She became depressed. Snappy. She would say some very harsh things to me. Almost every night she would wake up crying in the middle of the night. It would wake me up, and I'd try to comfort her, but there was little I could do. On days I worked (I have a good job, but deeply weird work hours) she would tell me to go back to sleep, but the apartment is tiny and there is no place where I could not here here. Even if I couldn't hear her, I'd know how upset she was, and have a hard time sleeping.
"I'm going to die." she said with a sniffle. It was the first time she had said that.
"No you aren't." I said, "We've been through the hard parts. We're on the downhill slope now." But those Demons would whisper in my ear. Sometimes when I worked the overnight and it was slow. I'd look up those cold statistics, and weep.
The pain got worse. There was a fistula. The doctors repaired it in an outpatient procedure. She had been dreading the hospital stay, and fortunately didn't have one.
Again though the pain got worse. And worse. And she got more and more tired, sad, and angry with me. She'd accuse me of hating her. She could barely get up again. I'd call the doctors and tell them. More pain meds. I'd tell her we should go in, so that could see how much she was suffering, but she didn't want to go.
"You don't get it, I'm done. I'm not going to make it!" she said.
"Please don't say that, your kicking the cancer's ass with both feet." I reply
She had a follow up with her Oncologist. They want to do one last round of chemo "just in case." She didn't let me go with her. She's been doing that a lot lately. Not telling me what doctors say, and getting angry when I ask. She'd also been so tired, and dopey. She's fall asleep when I asked her a question. "Go hang out with you friends or something. you need a break." she's right, I do. I can't tell you when I got more than 4-5 hours of sleep a night. I've been an insomniac since I was a child. Once I wake up, I am up for hours. The thing is, I really don't have any friends here. There is no one to go out with. I've spent every waking moment looking after her, cooking, doing laundry, picking up prescriptions, etc. So, I when she heads out I explore the neighbor hood. I've really not had much time for that sort of thing. I don't have an back up or support. Visiting nurse service came for a while, but they just took he blood pressure, and talked to me about God. I get the call a few hours later. She's on her way to the emergency room. Her kidneys are in failure.
"I'm gonna die! I'm gonna die! I'm gonna DIE!" the last die turns into a shriek that pierces my skull and make me involuntarily cringe.
"You'll be alright babe, I got ya." I say.
Another hospital stay. They determine that the kidney problems are because she cannot urinate properly. With a catheter the kidneys return to normal. But there are swollen lymph nodes. The oncologist tells her not to worry about that right now, but he tells me (I am her health care proxy) that they could be the source of the problem, and that it could be cancerous, but he doesn't know anything yet. He wants to wait a bit to see if the swelling goes down. He says if they are cancerous it could be very very bad, but he doesn't want to worry her yet until he has a better idea. Every night she would call me around 3:00 AM, terrified.
Two weeks ago that was. They sent her home, and though the kidneys are doing better the pain is worse. I don't get more that a hours sleep at a shot any more, and never more than 4 hours a night. I learned in wild land firefighter training that you can run indefinitely on 3 hours a night. You're unlikely to collapse and you won't hallucinate. You'll just be really unhappy.
"I give up. I'm sorry." she said softly.
Though I felt my heart wither and limbs grow heavier than I thought possible, it took her hand in mine and said, "You will be OK. Your' winning this fight."
She spends most of her awake time sobbing right now. She's seen the doctors almost every day this week, and goes in again tomorrow. When she's with them, she seems together and strong and says everything is OK, but as soon as they are gone, she sobs and tells me how bad the pain is. She begs and pleads with me to make it stop. To help her. Bu when I ask what I can do she says nothing. At night she sobs and gets angry with me when I try to comfort her. "Get some Sleep!" She says, "You look like hell! You need sleep!" She's right of course, but the apartment is tiny, and as tired as I am, it's just not possible. So I sit and hug her, or hold her hand. but I'd be lying if I wasn't seething sometimes inside. I want to sleep so bad. 8 hours. Uninterrupted. I fantasize about my old place out in the quite of the woods. No man made light, and almost no sound. The kind of quiet where you can hear your own heart beat. I dream of sprawling on the middle of the bed and pulling the covers up to my head, and drifting off in a warm haze until late the following morning. But it won't happen. I will be woken up. She needs me. Even upset I keep calm. Anger will only make it worse. Tomorrow she goes to the doctors again. I hope they take her complains of pain seriously, and that she doesn't gloss over her pain when she talks to them. I am at my wits end. I don't know how much more I can take. I'm so tired physically, spiritually, emotionally. My family is to far to help, and her family are having their own serious crisis that prevent them from really helping. Her brother says he will, and he would, be he's as burnt out as I am now and has his own serious health issues. What fuel do you burn when you've got nothing left?
I've not told anyone one person all of this before...
One year and counting...