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A year ago today.
May. 15th, 2014 03:58 pm1 year ago today, I was in surgery, having that godforsaken tumour cut out of me. It's been a whole year since then. Happy birthday to the scar on my abdoment, happy deathday to the twisted overgrowth of cells that was the size of a grapefruit, clinging to an organ the size of my fist.
I'm trying to be positive about it all. But in actuality, this is a harder day that I expected it to be. The whole situation just won't leave my mind. The days at work where walking was too much a chore, where I nearly fell asleep in the middle of conversations because I had no energy. The months I spent at home, not working, resting as much as I could, napping every day just to make it to bedtime, hoping each day that maybe when I go back to work, I'll be better, I'll have improved, I can start to recover.
The first time I was hospitalized, and it scared the hell out of me. I didn't go because I thought something might be wrong. I went a few days after the IUD was put in, another in my doctor's long list of "maybe this will work" treatments that all revolved around hormones and things that weren't permanent in case I wanted children, with her stubborn refusal to admit that the tumour was the problem because hey, they're so common and mostly don't cause problems so it must be something else. I knew at the time that the IUD might cause bleeding for at least another month before I'd even know if it was doing anything to stop the bleeding I was already experiencing. I went to the hospital because I wanted just a few more days off work, a few more days of rest and hopefully by then the bleeding might calm down a bit and I could handle it again.
That was the day that I had a doctor feel my abdomen, say, "Yes, I can feel the tumour there," and I just burst out with, "Is that what that hard area is?!" He backed down a bit, embarassed, but he wasn't wrong. The thing was so big it could be felt easily through my flesh, through a very thick layer of fat. That was the day my roommate told me that, when I had to go to the bathroom twice in 15 minutes to change my tampon, that nurses were looking at me with pity and saying that nobody should be going through what I was going through. That was the day I was told that I would be admitted to the hospital for the first time in my life.
A few days later, I finally got my doctor to agree that maybe the tumour was the problem. After all, it had only grown 3 cm in 6 months, which is 6-12 times faster than that kind of tumour grows on average. I was told I'd bled out the IUD, which explained the painful blood clot I'd passed the day after I'd had it inserted in the first place. That was the day I made my doctor unhappy by choosing surgery to remove the tumour, because although she offered it as an option, it was clear that she'd rather have me try another IUD (and another $500 out-of-pocket expense to buy one) or else have radiation treatment to shrink the tumour but not remove it entirely.
Today, 1 year ago, I was being cut into.
Tomorrow, it will be 1 year since I discovered that the tumour was more advanced than my doctor thought, so "her" decision to remove it was a smart one.
3 days from now, it will be 1 year since I found out that my doctor discharged me with hemoglobin as low as it had ever been, and this was after 2 units of blood post-op, after lying to me and telling me it was 10 points higher than it actually was. I saw the test results. I know she lied.
That started the time in which I had trouble getting out of bed as my wound healed. I could walk a little further every day, and was thrilled with myself when I could walk about 200 feet down the street to a little bench where I could sit down and rest before walking home again. It marked more days of lying around, not doing much, because I still didn't have much energy.
Though that period also marked the first time in a long time that I didn't have to nap in the middle of the day. Not unless I wanted to.
Today, I stand in the bedroom and look at where that bed was (roommate took it to PEI and left me the bigger bed), and I remember lying there, head propped up on pillows, alternately reading and looking out the window at the street and the green leaves in the trees, and I can feel everything about that time as clearly as if it happened last week. Today, if I lie on the couch and watch something on TV, I'm reminded very sharply of the times where I couldn't do anything but that.
It's a stupidly emotional day for me today. I wanted it to be positive, a celebration of how far I've come and all the BS I don't have to put up with anymore. And it is. But I can't celebrate how far I've come without looking back on where I was, and where I was is scary.
Statistically, there's a 15-30% chance I will regrow that tumour large enough to require another surgery within 5 years. I'm 1 year down. 20% done. Last scans I had done a few months ago show no sign of regrowth... or so the idiot doctor says. I do have a nice new ovarian cyst that isn't fading, and I can tell that because it's a ender point, but it's a functional cyst and show go away over time. I hope. And I'm not showing any symptoms like I used to. I'm still terrified every time I start bleeding, and I'm always amazed when it stops after 3-4 days and I haven't spent those days in agony and running to the bathroom every half hour or more. I don't have to sleep on towels and get up in the middle of the night to wash the blood from my legs.
If I make it to that 5 year point, my odds of it coming back drop dramatically, at least according to statistics. Until I'm middle-aged and start to go through menopause, anyway. But even then it's not likely anything will grow as large even if something grows at all.
But it's something I'm constantly aware of now. I had an uncommon presentation of a common issue, and something that dozens of help sites and material and doctors pass off as unimportant and more of a nuisance than a real threat.
When I say I was dying by inches, I'm not exaggerating. The way my hemoglobin was dropping because I couldn't stop bleeding, it was a threat. If I'd been stupid and stubborn the way I often get with health problems (a lifetime of having the poor luck to find abysmal doctors who don't take my complaints seriously or who are openly derisive of said complaints)... Well, the hemoglobin dropped by 30 points over a year and a half. I don't want to place bets on how long that could continue. I had already developped a heart problem because of it. A heart problem that healed once the blood loss stopped, but knowing that even temporary damage was done to my heart because of how long my doctor refused to admit that constant bleeding and anemia was a problem... Doesn't make me happy. Also scary as hell.
I hope to all deities that this is over, once and for all. That the tumour never regrows, that I never have to face those conditions again, and that I can let time fade these memories from my mind. That next year on this date, I'll be more concerned with happier things, things that don't involve me looking back on my life and going, "Fuck, I was in a really bad way not that long ago!"
I'm trying to be positive about it all. But in actuality, this is a harder day that I expected it to be. The whole situation just won't leave my mind. The days at work where walking was too much a chore, where I nearly fell asleep in the middle of conversations because I had no energy. The months I spent at home, not working, resting as much as I could, napping every day just to make it to bedtime, hoping each day that maybe when I go back to work, I'll be better, I'll have improved, I can start to recover.
The first time I was hospitalized, and it scared the hell out of me. I didn't go because I thought something might be wrong. I went a few days after the IUD was put in, another in my doctor's long list of "maybe this will work" treatments that all revolved around hormones and things that weren't permanent in case I wanted children, with her stubborn refusal to admit that the tumour was the problem because hey, they're so common and mostly don't cause problems so it must be something else. I knew at the time that the IUD might cause bleeding for at least another month before I'd even know if it was doing anything to stop the bleeding I was already experiencing. I went to the hospital because I wanted just a few more days off work, a few more days of rest and hopefully by then the bleeding might calm down a bit and I could handle it again.
That was the day that I had a doctor feel my abdomen, say, "Yes, I can feel the tumour there," and I just burst out with, "Is that what that hard area is?!" He backed down a bit, embarassed, but he wasn't wrong. The thing was so big it could be felt easily through my flesh, through a very thick layer of fat. That was the day my roommate told me that, when I had to go to the bathroom twice in 15 minutes to change my tampon, that nurses were looking at me with pity and saying that nobody should be going through what I was going through. That was the day I was told that I would be admitted to the hospital for the first time in my life.
A few days later, I finally got my doctor to agree that maybe the tumour was the problem. After all, it had only grown 3 cm in 6 months, which is 6-12 times faster than that kind of tumour grows on average. I was told I'd bled out the IUD, which explained the painful blood clot I'd passed the day after I'd had it inserted in the first place. That was the day I made my doctor unhappy by choosing surgery to remove the tumour, because although she offered it as an option, it was clear that she'd rather have me try another IUD (and another $500 out-of-pocket expense to buy one) or else have radiation treatment to shrink the tumour but not remove it entirely.
Today, 1 year ago, I was being cut into.
Tomorrow, it will be 1 year since I discovered that the tumour was more advanced than my doctor thought, so "her" decision to remove it was a smart one.
3 days from now, it will be 1 year since I found out that my doctor discharged me with hemoglobin as low as it had ever been, and this was after 2 units of blood post-op, after lying to me and telling me it was 10 points higher than it actually was. I saw the test results. I know she lied.
That started the time in which I had trouble getting out of bed as my wound healed. I could walk a little further every day, and was thrilled with myself when I could walk about 200 feet down the street to a little bench where I could sit down and rest before walking home again. It marked more days of lying around, not doing much, because I still didn't have much energy.
Though that period also marked the first time in a long time that I didn't have to nap in the middle of the day. Not unless I wanted to.
Today, I stand in the bedroom and look at where that bed was (roommate took it to PEI and left me the bigger bed), and I remember lying there, head propped up on pillows, alternately reading and looking out the window at the street and the green leaves in the trees, and I can feel everything about that time as clearly as if it happened last week. Today, if I lie on the couch and watch something on TV, I'm reminded very sharply of the times where I couldn't do anything but that.
It's a stupidly emotional day for me today. I wanted it to be positive, a celebration of how far I've come and all the BS I don't have to put up with anymore. And it is. But I can't celebrate how far I've come without looking back on where I was, and where I was is scary.
Statistically, there's a 15-30% chance I will regrow that tumour large enough to require another surgery within 5 years. I'm 1 year down. 20% done. Last scans I had done a few months ago show no sign of regrowth... or so the idiot doctor says. I do have a nice new ovarian cyst that isn't fading, and I can tell that because it's a ender point, but it's a functional cyst and show go away over time. I hope. And I'm not showing any symptoms like I used to. I'm still terrified every time I start bleeding, and I'm always amazed when it stops after 3-4 days and I haven't spent those days in agony and running to the bathroom every half hour or more. I don't have to sleep on towels and get up in the middle of the night to wash the blood from my legs.
If I make it to that 5 year point, my odds of it coming back drop dramatically, at least according to statistics. Until I'm middle-aged and start to go through menopause, anyway. But even then it's not likely anything will grow as large even if something grows at all.
But it's something I'm constantly aware of now. I had an uncommon presentation of a common issue, and something that dozens of help sites and material and doctors pass off as unimportant and more of a nuisance than a real threat.
When I say I was dying by inches, I'm not exaggerating. The way my hemoglobin was dropping because I couldn't stop bleeding, it was a threat. If I'd been stupid and stubborn the way I often get with health problems (a lifetime of having the poor luck to find abysmal doctors who don't take my complaints seriously or who are openly derisive of said complaints)... Well, the hemoglobin dropped by 30 points over a year and a half. I don't want to place bets on how long that could continue. I had already developped a heart problem because of it. A heart problem that healed once the blood loss stopped, but knowing that even temporary damage was done to my heart because of how long my doctor refused to admit that constant bleeding and anemia was a problem... Doesn't make me happy. Also scary as hell.
I hope to all deities that this is over, once and for all. That the tumour never regrows, that I never have to face those conditions again, and that I can let time fade these memories from my mind. That next year on this date, I'll be more concerned with happier things, things that don't involve me looking back on my life and going, "Fuck, I was in a really bad way not that long ago!"