Ugh. Last night sucked.
10:30pm got hooked up to my IV - a little late but in the ballpark.
1:30am the pump started screaming its head off - low batteries. I was dead asleep and G replaced the batteries with the ones he saw lying around handily, which also happened to be dead. So he had to (chose to; *g* but my mom is visiting) put on some pants and run downstairs for actual new ones.
4:30am the pump starting wailing again, and displayed the message "MALFUNCTION_ 7". After shutting the pump down and restarting it three times, and having it work for about five minutes and then break down again each time, I call the night number for the health care service, who page a person, who calls and has me do the same thing, and then we give up and I unhook and go back to bed. Oh yes, and while I am unhooking I have my first vomiting episode since 24 hours before I left the hospital. *sigh* I had had my very first soft food yesterday (half a cup of cooked diced potatoes, oh, how exciting!) and I guess I'm not ready for it.
Supposedly infusing at night makes one's days more free, as you aren't hooked up and can go wherever you want. In reality, the support staff isn't awake and neither are you when there's a problem. :-P
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Yesterday wasn't too bad, though.
My surgeon is very pleased with my recovery. I'm healing extremely well. He found a staple that the med student who unstapled me had missed. It was kind of funny, he seemed actually delighted with himself as he removed it. It was snuggled in the curve of the incision that goes around my belly button. (I had wondered what happens to your belly button when they make a giant incision that extends above it and below it. The answer is, it looks like they put a quarter over it and go around the edge.) I still have some puffiness (aside from my usual natural puffiness *g*) in my abdomen and so there's a deepish crease there and it was hiding in the bottom. He mooshed around on me, and it didn't hurt, which was good, and proclaimed everything good.
Except. (And this explains the vomiting last night.) I still have an area of the small intestine which is narrowed; which is what constitutes a partial obstruction, and is causing my digestive troubles. It is possible and he is hopeful that this particular area of narrowing is a temporary result of the surgery and after I heal up it will go away; but no guarantees.
He said I could graduate to soft foods in small amounts. :-P (And I haven't called yet but my expectation is I'm now demoted back to clears. I hope I can hold down water today.)
And then we talked, with most of my immediate family, about options. He's not sure yet exactly what he's going to recommend. But the gist of his current thought goes like this.
I am not a good candidate for radiation therapy, partly because of how this tumor presented, but mostly because when they went in for this surgery they found so many adhesions from the last one that it makes radiation guaranteed to kill me faster than doing nothing.
I am not a good candidate for doing nothing, as we know my cancer is recurrent and it is not conveniently restricting itself to manifesting in my toenails.
I am not a good candidate for hormone or antibody therapies because those they can test on the tumor samples they have, and they have done so and it is not reactive.
Which leaves chemo. I've already had the most aggressive combined therapy approach available/recommended for endometrial cancers, and six months after it ended had significant tumor recurrence. So, now the strategy will be first to wait a few more weeks until I heal as much as possible/prudent. Then try single drugs and see if they have an effect. Whether they have an effect will be judged by how I feel and how I look in CT scans (which have an imperfect record of showing my tumors, but are still the best thing available).
He is pretty sure this is the approach he wants to take, but is not yet sure what drug he wants to try first. He is also open to dialogue on the matter, with me and with anyone I care to consult. My personal case is so weird that there is no literature on what approaches have been used on people like me - there aren't (and haven't been) any.
So, say hello to peaberry, human guinea pig. *shrug* I don't mind particularly -- it's certainly better than throwing in the towel -- although I truly hope I get to be a winning piggie. I have not asked any questions, yet, about what this means as far as how long I may have to live. I mean, I 'may' have decades, and I may fall down the stairs and break my neck tomorrow. Certainly the longer I'm around the better chance there is that someone will have a significant breakthrough in treatment; and I'm all for being around to take advantage of that. But I think how I would spend my time would be different if I had a projection of six months vs. six years or sixteen.
I have sent off my records to a friend of my uncle who happens to be a pooh-bah at the National Cancer Institute, and we are waiting for his feedback as well.
And now I'll call in and find out what they think I should be doing wrt fluid intake today.
1:30am the pump started screaming its head off - low batteries. I was dead asleep and G replaced the batteries with the ones he saw lying around handily, which also happened to be dead. So he had to (chose to; *g* but my mom is visiting) put on some pants and run downstairs for actual new ones.
4:30am the pump starting wailing again, and displayed the message "MALFUNCTION_ 7". After shutting the pump down and restarting it three times, and having it work for about five minutes and then break down again each time, I call the night number for the health care service, who page a person, who calls and has me do the same thing, and then we give up and I unhook and go back to bed. Oh yes, and while I am unhooking I have my first vomiting episode since 24 hours before I left the hospital. *sigh* I had had my very first soft food yesterday (half a cup of cooked diced potatoes, oh, how exciting!) and I guess I'm not ready for it.
Supposedly infusing at night makes one's days more free, as you aren't hooked up and can go wherever you want. In reality, the support staff isn't awake and neither are you when there's a problem. :-P
------------------------------------------------------
Yesterday wasn't too bad, though.
My surgeon is very pleased with my recovery. I'm healing extremely well. He found a staple that the med student who unstapled me had missed. It was kind of funny, he seemed actually delighted with himself as he removed it. It was snuggled in the curve of the incision that goes around my belly button. (I had wondered what happens to your belly button when they make a giant incision that extends above it and below it. The answer is, it looks like they put a quarter over it and go around the edge.) I still have some puffiness (aside from my usual natural puffiness *g*) in my abdomen and so there's a deepish crease there and it was hiding in the bottom. He mooshed around on me, and it didn't hurt, which was good, and proclaimed everything good.
Except. (And this explains the vomiting last night.) I still have an area of the small intestine which is narrowed; which is what constitutes a partial obstruction, and is causing my digestive troubles. It is possible and he is hopeful that this particular area of narrowing is a temporary result of the surgery and after I heal up it will go away; but no guarantees.
He said I could graduate to soft foods in small amounts. :-P (And I haven't called yet but my expectation is I'm now demoted back to clears. I hope I can hold down water today.)
And then we talked, with most of my immediate family, about options. He's not sure yet exactly what he's going to recommend. But the gist of his current thought goes like this.
I am not a good candidate for radiation therapy, partly because of how this tumor presented, but mostly because when they went in for this surgery they found so many adhesions from the last one that it makes radiation guaranteed to kill me faster than doing nothing.
I am not a good candidate for doing nothing, as we know my cancer is recurrent and it is not conveniently restricting itself to manifesting in my toenails.
I am not a good candidate for hormone or antibody therapies because those they can test on the tumor samples they have, and they have done so and it is not reactive.
Which leaves chemo. I've already had the most aggressive combined therapy approach available/recommended for endometrial cancers, and six months after it ended had significant tumor recurrence. So, now the strategy will be first to wait a few more weeks until I heal as much as possible/prudent. Then try single drugs and see if they have an effect. Whether they have an effect will be judged by how I feel and how I look in CT scans (which have an imperfect record of showing my tumors, but are still the best thing available).
He is pretty sure this is the approach he wants to take, but is not yet sure what drug he wants to try first. He is also open to dialogue on the matter, with me and with anyone I care to consult. My personal case is so weird that there is no literature on what approaches have been used on people like me - there aren't (and haven't been) any.
So, say hello to peaberry, human guinea pig. *shrug* I don't mind particularly -- it's certainly better than throwing in the towel -- although I truly hope I get to be a winning piggie. I have not asked any questions, yet, about what this means as far as how long I may have to live. I mean, I 'may' have decades, and I may fall down the stairs and break my neck tomorrow. Certainly the longer I'm around the better chance there is that someone will have a significant breakthrough in treatment; and I'm all for being around to take advantage of that. But I think how I would spend my time would be different if I had a projection of six months vs. six years or sixteen.
I have sent off my records to a friend of my uncle who happens to be a pooh-bah at the National Cancer Institute, and we are waiting for his feedback as well.
And now I'll call in and find out what they think I should be doing wrt fluid intake today.