So a quick catch up over the last two years. Back in February of 2014, the day before a scheduled vacation to Puerto Rico, Jen went to get a colonoscopy for suspected ulcerative colitis. That diagnosis was annoying, but hey, at least it's not cancer!
Except, shit. It is. And it's bad. At this point, the best data would could find was about a 66% five year survival rate. So Jen does radiation, has surgery and then chemo and things are looking good. It takes her a while to recover from everything, but by February of 2015 she is pretty much back to normal.
Then, in May of 2015, her symptoms come back. She's back to having blood in her stool. She gets another colonoscopy and the nurse anesthetist says "Good news! It just looks like ulcers!" Only that's really bad news, since the ulcers are caused by the return of her cancer. So back to surgery again in June of 2015 and she is doing okay with a permanent colostomy and a free hysterectomy.
So now, by September of 2015, she is back to normal. About a month later, the symptoms are back. It's yet another relapse. Her oncologist and surgeon still think surgery might be an option, but it's going to be ugly. This time, they are going to have to take out the rest of the rectum and anus (apparently everybody has an opinion but not everybody has an asshole!) along with her vagina and possibly her bladder, leaving her with a permanent urostomy.
The day of her surgery comes, and about 3 hours in I get a call from her surgeon. This is never good news. He doesn't think he can safely do the surgery. He says it probably won't kill her, but it might paralyze her. And it almost certainly won't stop the cancer. It's too aggressive and too stuck to everything. So that's it. He closes her back up after fixing up her colostomy a bit. When she wakes up, I have to tell her the news.
After a month of recovery, we go meet her oncologist to figure out what's next. At this point, there is no real chance of cure. Sure, miracles happen, but probably not this time. From now, on, Jen will be slowly dying. She has received her death sentence, but with no execution date. Going in, we didn't expect much of a plan. We normally get an idea, but things are left up in the air. Not this time. Her oncologist gives her a detailed plan. We start with chemo 1, and march through all the possible medicines until she dies or we run out of new drugs to try. Welcome to the rest of your life. It might last 7 months, and it might last 2 years.
It's hard in so many ways. From the day to day of dealing with the chemotherapy that will be part of the rest of her life. To dealing with our two five year old boys, who I will soon become a single parent for. Dealing with her family and all of their emotions. And most importantly, dealing with out feelings. How do you live with somebody who you know is dying? Somebody you've been married to for more than 15 years. Somebody who you've been with for more than 20 years. More than half of our lives have been lived together. How do you imagine life without them?
In some ways, I want these answers. In other ways, I don't. I know that when I get them, it will be because my best friend is dead. My parenting foil will no longer be around to give the snuggle to counteract my discipline. I'll be the good cop and the bad cop.
So instead, I live with joy and dread. I'm so happy and thankful that I've been lucky enough to spend 20 years with an amazing woman. I've been lucky enough to meet and marry my soulmate. But I have to watch her die. And not the hit by a truck, instant death, but the slow and painful death that end with me withdrawing feeding while she's in a coma, or an accidental overdose of the narcotics that will be used to stop the excruciating pain.
And now, I have all of these things in my head while seeing a woman who looks reasonably healthy. Sure, if she lifts her shirt you see the scars from surgery after surgery and the colostomy bag that has been part of her life. 3 days every two weeks you see the tube that poisons her slowly to extend her life. I see the 3 days after chemo where she is tired and nauseated. But I also see the 8 days where she is Jen, the woman I married. It's hard to rationalize those two views of the same person.
And I have to, but only for a while. As one of them slips away and is replaced by the other. Until they are both gone.
Except, shit. It is. And it's bad. At this point, the best data would could find was about a 66% five year survival rate. So Jen does radiation, has surgery and then chemo and things are looking good. It takes her a while to recover from everything, but by February of 2015 she is pretty much back to normal.
Then, in May of 2015, her symptoms come back. She's back to having blood in her stool. She gets another colonoscopy and the nurse anesthetist says "Good news! It just looks like ulcers!" Only that's really bad news, since the ulcers are caused by the return of her cancer. So back to surgery again in June of 2015 and she is doing okay with a permanent colostomy and a free hysterectomy.
So now, by September of 2015, she is back to normal. About a month later, the symptoms are back. It's yet another relapse. Her oncologist and surgeon still think surgery might be an option, but it's going to be ugly. This time, they are going to have to take out the rest of the rectum and anus (apparently everybody has an opinion but not everybody has an asshole!) along with her vagina and possibly her bladder, leaving her with a permanent urostomy.
The day of her surgery comes, and about 3 hours in I get a call from her surgeon. This is never good news. He doesn't think he can safely do the surgery. He says it probably won't kill her, but it might paralyze her. And it almost certainly won't stop the cancer. It's too aggressive and too stuck to everything. So that's it. He closes her back up after fixing up her colostomy a bit. When she wakes up, I have to tell her the news.
After a month of recovery, we go meet her oncologist to figure out what's next. At this point, there is no real chance of cure. Sure, miracles happen, but probably not this time. From now, on, Jen will be slowly dying. She has received her death sentence, but with no execution date. Going in, we didn't expect much of a plan. We normally get an idea, but things are left up in the air. Not this time. Her oncologist gives her a detailed plan. We start with chemo 1, and march through all the possible medicines until she dies or we run out of new drugs to try. Welcome to the rest of your life. It might last 7 months, and it might last 2 years.
It's hard in so many ways. From the day to day of dealing with the chemotherapy that will be part of the rest of her life. To dealing with our two five year old boys, who I will soon become a single parent for. Dealing with her family and all of their emotions. And most importantly, dealing with out feelings. How do you live with somebody who you know is dying? Somebody you've been married to for more than 15 years. Somebody who you've been with for more than 20 years. More than half of our lives have been lived together. How do you imagine life without them?
In some ways, I want these answers. In other ways, I don't. I know that when I get them, it will be because my best friend is dead. My parenting foil will no longer be around to give the snuggle to counteract my discipline. I'll be the good cop and the bad cop.
So instead, I live with joy and dread. I'm so happy and thankful that I've been lucky enough to spend 20 years with an amazing woman. I've been lucky enough to meet and marry my soulmate. But I have to watch her die. And not the hit by a truck, instant death, but the slow and painful death that end with me withdrawing feeding while she's in a coma, or an accidental overdose of the narcotics that will be used to stop the excruciating pain.
And now, I have all of these things in my head while seeing a woman who looks reasonably healthy. Sure, if she lifts her shirt you see the scars from surgery after surgery and the colostomy bag that has been part of her life. 3 days every two weeks you see the tube that poisons her slowly to extend her life. I see the 3 days after chemo where she is tired and nauseated. But I also see the 8 days where she is Jen, the woman I married. It's hard to rationalize those two views of the same person.
And I have to, but only for a while. As one of them slips away and is replaced by the other. Until they are both gone.
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