Cait and Bob came with me to meet with Dr. C yesterday. She did do an ultrasound and it showed that the tumor is about half the size it was the last time she saw me, and it has flattened out into an entirely different shape now, and she agrees with Dr. T that it's entirely possible that what is left is mostly non-malignant tissue. So she's on board with what she dubbed the "sandwich" plan (surgery between two courses of chemo) if the tests go my way in the next couple of weeks.
She gave me referrals to two different plastic surgeons that I'll get separate consults from, and then I'll pick one or move on to others if I don't like either. She also referred me to a gyno-onco surgeon (there's a better term for that, I'm sure) surgeon to do the oopherectomy. Can't remember if I've explained that bit, so here goes. The BRCA mutation pretty much guarantees I'll get ovarian cancer if I don't have them removed in the next couple of years, regardless of the success of my treatment now. "Ovarian cancer" in this case also includes major risk in the fallopian tube tissue as well, so all of that has to come out. And it basically means taking a cone section out of the uterus around the fallopian tubes since that tissue tunnels all the way through to the inside of the uterus. So I need a specialist there because it's just a much greater level of detail in the surgery than it would be if I was having my ovaries removed for some other reason, or my tubes tied, for example.
So next week I go see the ortho about my ankle (which I think is fine) and make appointments with these three surgeons and get more details on what the options are for reconstruction.
My ankle hasn't gotten any more painful, although it is really colorful at the moment. I'm keeping it under compression and the extra swelling is gone now. But I am feeling numbness down the outside of my foot. But I'm also feeling numbness down the outside of my other foot, which makes me think this is neuropathy from taxol, not necessarily damage from the fall. No pain, it just feels a little off, like my pinky toes are going to sleep. But I can move them fine and walk fine and my circulation is clearly OK.
The other thing that happened this week is that I finally went anemic. It took me a lot longer than they expected it to - apparently most people get there around week 6 or 7 on taxol, I made it all the way to 10. Which I take to mean that my pate plan was successful. And I'm continuing to eat it regularly (really this is food as medicine at this point, I cannot imagine ever eating it again) to keep my iron levels as high as I can. But it's just one of the functions of chemo - you burn through it faster than your body could possibly absorb it, so I was always going to get here. If it gets bad enough I would need to have a transfusion, but I'm just barely over the line now and will try to maintain the habit for the next couple of weeks. I can feel it though. Weaker by the day. I still try to take Dexter out for his morning walk and I can't describe the feeling of climbing the stairs any better than just being completely out of gas.
And another thing that is happening is that I've developed a "pleuritic cough" - this is another one of those side effects of the LCL that everybody gets eventually, apparently. It sounds so dainty and victorian, right? Dry cough. It started while I was at the conference last week and I assumed I was just wearing myself out talking. Nope. It's intermittent and annoying, but I can still reliably take a deep breath without coughing 99.9% of the time, so we're not doing anything about it for now. If it gets worse, I get......more steroids!
And finally. Totally TMI again. You've been warned. The Lomotil has been the miracle maintenance drug as far as I'm concerned. I can deal with puking (about once a week recently), but complete bowel incontinence is abject misery and disgusting. This solved that problem and I think is really the thing that has kept me sane and able to keep living my life over the last couple of months. But. Those two pills stop everything dead in my gut for a couple of days. And the steroids make me hungry. So by Thursday night I'm still hungry but very full of...shit. It's kind of disturbing. I tried taking a stool softener a couple weeks ago, and it just gave me the runs again which defeats the purpose of the Lomotil in the first place. On Friday when it all breaks loose, at least it does so in an orderly fashion. No pain. No diarrhea. It's just. A lot. And I'll leave it there.
Two weeks to go, and then everything changes again.
She gave me referrals to two different plastic surgeons that I'll get separate consults from, and then I'll pick one or move on to others if I don't like either. She also referred me to a gyno-onco surgeon (there's a better term for that, I'm sure) surgeon to do the oopherectomy. Can't remember if I've explained that bit, so here goes. The BRCA mutation pretty much guarantees I'll get ovarian cancer if I don't have them removed in the next couple of years, regardless of the success of my treatment now. "Ovarian cancer" in this case also includes major risk in the fallopian tube tissue as well, so all of that has to come out. And it basically means taking a cone section out of the uterus around the fallopian tubes since that tissue tunnels all the way through to the inside of the uterus. So I need a specialist there because it's just a much greater level of detail in the surgery than it would be if I was having my ovaries removed for some other reason, or my tubes tied, for example.
So next week I go see the ortho about my ankle (which I think is fine) and make appointments with these three surgeons and get more details on what the options are for reconstruction.
My ankle hasn't gotten any more painful, although it is really colorful at the moment. I'm keeping it under compression and the extra swelling is gone now. But I am feeling numbness down the outside of my foot. But I'm also feeling numbness down the outside of my other foot, which makes me think this is neuropathy from taxol, not necessarily damage from the fall. No pain, it just feels a little off, like my pinky toes are going to sleep. But I can move them fine and walk fine and my circulation is clearly OK.
The other thing that happened this week is that I finally went anemic. It took me a lot longer than they expected it to - apparently most people get there around week 6 or 7 on taxol, I made it all the way to 10. Which I take to mean that my pate plan was successful. And I'm continuing to eat it regularly (really this is food as medicine at this point, I cannot imagine ever eating it again) to keep my iron levels as high as I can. But it's just one of the functions of chemo - you burn through it faster than your body could possibly absorb it, so I was always going to get here. If it gets bad enough I would need to have a transfusion, but I'm just barely over the line now and will try to maintain the habit for the next couple of weeks. I can feel it though. Weaker by the day. I still try to take Dexter out for his morning walk and I can't describe the feeling of climbing the stairs any better than just being completely out of gas.
And another thing that is happening is that I've developed a "pleuritic cough" - this is another one of those side effects of the LCL that everybody gets eventually, apparently. It sounds so dainty and victorian, right? Dry cough. It started while I was at the conference last week and I assumed I was just wearing myself out talking. Nope. It's intermittent and annoying, but I can still reliably take a deep breath without coughing 99.9% of the time, so we're not doing anything about it for now. If it gets worse, I get......more steroids!
And finally. Totally TMI again. You've been warned. The Lomotil has been the miracle maintenance drug as far as I'm concerned. I can deal with puking (about once a week recently), but complete bowel incontinence is abject misery and disgusting. This solved that problem and I think is really the thing that has kept me sane and able to keep living my life over the last couple of months. But. Those two pills stop everything dead in my gut for a couple of days. And the steroids make me hungry. So by Thursday night I'm still hungry but very full of...shit. It's kind of disturbing. I tried taking a stool softener a couple weeks ago, and it just gave me the runs again which defeats the purpose of the Lomotil in the first place. On Friday when it all breaks loose, at least it does so in an orderly fashion. No pain. No diarrhea. It's just. A lot. And I'll leave it there.
Two weeks to go, and then everything changes again.
Wow things are really moving fast. Eric asked how you were doing yesterday and I gave him all the latest. He sends many cancer kicking thoughts your way (as do I of course).
ReplyDelete-s
Yes. Crazy fast. I think it's good, I don't have time to be too stressed out about it.
ReplyDeleteHi Sonya. I've been thinking about you, and asking Kevin if he has heard from you. Then he remembered your blog, and gave me the link. I hope everything keeps going in the right direction, and that you are as comfortable as possible in the coming weeks. Our best wishes always <3
ReplyDeleteThanks! So far so good. :)
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