I got more information from the surgeon today. It's a lot worse than they were letting on when I was in the office, which I suspected, but am still upset at having the confirmation today. I understand why medical people try to minimize stuff, but it really drives me insane when the message goes from "it's just a hernia" and I do all my research on that phrasing and recovery, and then get the information from my doctor today to expect to be in the hospital for a solid week post-op. It's definitely open. Just as invasive as the first surgery, if not more so (but in my abdomen only this time, no impact on my chest or arms). I need to look into filing disability paperwork again, tomorrow.
And that's where I hit the wall. I'm still not afraid of the surgery itself, and not the hospital stay either. This will be my 8th. EIGHT. Three of those have been outpatient. The other five included stays of 2-7 days. And I've had two other week long hospitalizations too. This is old territory.
So here's how it goes: I drink as much water as I possibly can hold until midnight on Sunday the 20th. I take some ativan and pretend to sleep for five hours. We get up at 5am and drive into the city so we can check in at UCSF (Parnassus this time) by 6, I get to have a meltdown about the IV. I freeze my ass off in the gown that doesn't fit right and the air blanket that doesn't quite cover my feet while the cold saline and pre-meds go in. Somebody delays something because nothing ever happens on time. Sometime between 8 and 9 they roll me in for the surgery that was supposed to start at 7. I wake up in pain, not quite enough pain meds, in recovery and won't really recall anything that happens over the coming week because I'll be in a drugged stupor the entire time. They'll send me home once I've pooped and climbed three stairs in the occupational therapists office. And they'll do it despite the fact that I'm unstable and have to climb two full flights to get in my house. And then I'll sit in the bed in my office for weeks? Months? It was about six months last time before I was done with the wound vac and ready to move upstairs again.
And the fucking wound vac. Nobody's mentioned it yet, but the last two surgeries I had I needed one, so might as well expect it this time and enjoy being pleasantly surprised if it doesn't happen.
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This life that I have now. Working and sleeping and seeing the light at the end of the tunnel disappear again. Being unable to do the physical things that would make me feel better - can't exercise, can't go get a massage or sit in a hot tub (still an open spot on my stomach from over a year ago), can't even comfortably hug my husband because my body is so fucked up.
This is what scares me. Makes me depressed and want to throw things. Makes me wonder why I keep bothering. This is not the life I wanted. I try to do the best with what I've got, but today that's nowhere near good enough. I have so been looking forward to trips to Yosemite with my family at the end of January and to Puerto Rico in February with Bob. Not anymore. We still haven't had our honeymoon.
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Still here? I've realized that I should clarify a couple of things because of questions people have asked over the last few days. This is definitely a result of the last surgery a year ago. Not a common side effect, but a possible one. When they transplanted the tissue from my abdomen to my chest they peeled off the outer edge of my ab muscles to get the blood supply to support the transplanted tissue. So my abs were already super weak and damaged, and then I took longer to heal than anybody expected and it all atrophied more than it should have. There's no way to know now if I actually had the beginnings of the hernia when I started physical therapy, but the weakness was definitely there, my physical therapist called it out on my first or second session - the beginnings of the alien. She was super cautious about it. The surgeon specifically told me to exercise with no restrictions, even when I pointed it out, and said that if it's still a problem we could "address it surgically". And here we are.
And that's where I hit the wall. I'm still not afraid of the surgery itself, and not the hospital stay either. This will be my 8th. EIGHT. Three of those have been outpatient. The other five included stays of 2-7 days. And I've had two other week long hospitalizations too. This is old territory.
So here's how it goes: I drink as much water as I possibly can hold until midnight on Sunday the 20th. I take some ativan and pretend to sleep for five hours. We get up at 5am and drive into the city so we can check in at UCSF (Parnassus this time) by 6, I get to have a meltdown about the IV. I freeze my ass off in the gown that doesn't fit right and the air blanket that doesn't quite cover my feet while the cold saline and pre-meds go in. Somebody delays something because nothing ever happens on time. Sometime between 8 and 9 they roll me in for the surgery that was supposed to start at 7. I wake up in pain, not quite enough pain meds, in recovery and won't really recall anything that happens over the coming week because I'll be in a drugged stupor the entire time. They'll send me home once I've pooped and climbed three stairs in the occupational therapists office. And they'll do it despite the fact that I'm unstable and have to climb two full flights to get in my house. And then I'll sit in the bed in my office for weeks? Months? It was about six months last time before I was done with the wound vac and ready to move upstairs again.
And the fucking wound vac. Nobody's mentioned it yet, but the last two surgeries I had I needed one, so might as well expect it this time and enjoy being pleasantly surprised if it doesn't happen.
---------
This life that I have now. Working and sleeping and seeing the light at the end of the tunnel disappear again. Being unable to do the physical things that would make me feel better - can't exercise, can't go get a massage or sit in a hot tub (still an open spot on my stomach from over a year ago), can't even comfortably hug my husband because my body is so fucked up.
This is what scares me. Makes me depressed and want to throw things. Makes me wonder why I keep bothering. This is not the life I wanted. I try to do the best with what I've got, but today that's nowhere near good enough. I have so been looking forward to trips to Yosemite with my family at the end of January and to Puerto Rico in February with Bob. Not anymore. We still haven't had our honeymoon.
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Still here? I've realized that I should clarify a couple of things because of questions people have asked over the last few days. This is definitely a result of the last surgery a year ago. Not a common side effect, but a possible one. When they transplanted the tissue from my abdomen to my chest they peeled off the outer edge of my ab muscles to get the blood supply to support the transplanted tissue. So my abs were already super weak and damaged, and then I took longer to heal than anybody expected and it all atrophied more than it should have. There's no way to know now if I actually had the beginnings of the hernia when I started physical therapy, but the weakness was definitely there, my physical therapist called it out on my first or second session - the beginnings of the alien. She was super cautious about it. The surgeon specifically told me to exercise with no restrictions, even when I pointed it out, and said that if it's still a problem we could "address it surgically". And here we are.
Sonya,
ReplyDeleteI've kept up on your situation from afar. Seeing similar situations in my family somewhat help put your situation in context but I can never physically feel your pain, only through emotional color do I relate. One thing I've always loved about you so much is: YOU. ARE. A. FIGHTER. You have more courage, compassion and conviction than most anyone I know. I love you lots whether I'be shared these words with you. Both Bob and You have such amazing beauty that is beyond words. Well, I'm ashamed for just monitoring from the sidelines. Please let me know what my family can do for you. We are here. We love you.
Thanks Shar. Once I'm in it, it's really Bob who needs the support. I'll be too stoned to care while he has to cart me around to appointments and take care of everything else in the household. If you make it into HQ while I'm out, take him out for a whiskey tasting or something. :)
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