I spent almost a week at my mother's. My brother was there too. We had scheduled the trip because she was supposed to be having surgery this past week, but that had been cancelled after her last MRI. But we went anyway to support her and go with her for second opinions, to get her port put in for chemo, for her appointment with an alternative doctor, to organize and copy documents, etc. It was good that we went. And good to go away.
I feel like a bad daughter for saying that. But it wasn't even my mother that was the problem, it was my grandmother- who has a mean streak and I never got along with, and now that the is old and her memory is going when I get angry I can only feel guilty, I can't defend myself. And the drama in my family, between my mother, sister, and grandmother- who all live together- it just too much for me. I hate conflict.
I feel incredibly guilty that I will not be there next Thursday when she is supposed to start chemo. I don't have a lot of PTO left. I do have 12 weeks of unpaid PTO that I can take- but I don't want to take it too soon , because that is all that I can take. And if she is going to have 3 months of chemo and then surgery- I can't use it up all now.
I also have doctor and dentist appointments in September. And I am trying to save up money for unpaid leave. I have enough money for 1 month. I need two months more.
My boss asked me if I wanted to move to Atlanta. I felt like she was trying to get rid of me. I don't know if that was her intent or not. I feel like I should move there, I just don't want to. I don't like it there. Plus if I start a new job there I won't have any FML for a year.
I have to stay at my current job until January to get that little bit of a pension I will get, before they froze it and went to a 403b. I don't know if taking a FML changes that, if I would have to stay longer. I should ask HR. Also, with my implants, I think I don't get the actual teeth until March- so I will at least need to be coming back here until then.
When I have thought about moving, it has always been about moving closer to my brother and nieces. Never farther away. But for now I am staying put.
Saturday, August 22, 2015
Sunday, August 9, 2015
I can't imagine what my mom is going through
I am still trying to understand this. How is it that one month ago, in the hospital, they only saw the bile duct tumor- nothing in the pancreas in the MRI or other imaging. In fact things looked good enough that they thought they could wait on the Whipple surgery for her to have her knee fracture surgery first.
Then a month later another MRI finds pancreatic cancer that is so advanced that it is no longer resectable. Did it grow that fast? Was it a bad MRI in the hospital? Was it misread? I know, I know. MRI's don't show everything. I tell my patients that. But it is different when you are on the other side of that fact.
I also don't know what my mother should do. When it was bile duct cancer that hadn't spread- the surgery was a no-brainer. But now I don't know. Pancreatic cancer has pretty bad outcomes no matter what you do, do you want to spend that time getting chemo and surgery that might buy you a few months or at most a year or two if you are really lucky?
From what I am reading, there are two categories- and I'm not sure what category she is in. Borderline resectable might do okay with chemo first and then surgery. It might give her some time. But if she is in the locally advanced category, then even if they shrink the tumors enough to have the surgery- which is less likely- it won't even give her as much time.
And then mom really wants to go the alternative medicine route. And when it comes to pancreatic cancer, I am not sure I disagree. I don't think that conventional medicine has much to offer. Especially if you are not a surgical candidate.
But this is why we need a second opinion. And in the end it is her cancer, her life, and she is going to handle it the way she feels is best.
Then a month later another MRI finds pancreatic cancer that is so advanced that it is no longer resectable. Did it grow that fast? Was it a bad MRI in the hospital? Was it misread? I know, I know. MRI's don't show everything. I tell my patients that. But it is different when you are on the other side of that fact.
I also don't know what my mother should do. When it was bile duct cancer that hadn't spread- the surgery was a no-brainer. But now I don't know. Pancreatic cancer has pretty bad outcomes no matter what you do, do you want to spend that time getting chemo and surgery that might buy you a few months or at most a year or two if you are really lucky?
From what I am reading, there are two categories- and I'm not sure what category she is in. Borderline resectable might do okay with chemo first and then surgery. It might give her some time. But if she is in the locally advanced category, then even if they shrink the tumors enough to have the surgery- which is less likely- it won't even give her as much time.
And then mom really wants to go the alternative medicine route. And when it comes to pancreatic cancer, I am not sure I disagree. I don't think that conventional medicine has much to offer. Especially if you are not a surgical candidate.
But this is why we need a second opinion. And in the end it is her cancer, her life, and she is going to handle it the way she feels is best.
Friday, August 7, 2015
False hope
In the hospital my mother was diagnosed with bile duct cancer. They said that they caught it early and that they could take it out. Awful surgery, and no guarantee that there wouldn't be a recurrence eventually, but generally hopeful.
Now that has changed. My mother went to see the surgical oncologist and had another MRI. And she has a new diagnosis. Pancreatic cancer. And supposedly this is primary, and it spread to the bile duct. Somehow it never showed up on any of her previous MRI's, except as a shadow on the last one. But now there is a tumor. And the surgeon doesn't think he can get it all out, so there is no surgery.
He does want her to try chemotherapy and radiation, in the hopes that this will shrink the tumor enough to make it resectable. Then would do the surgery. But I don't know what the odds are that it will, or even that it will prolong her life.
I wish that I had been there. They didn't have the presence of mind to ask the right questions. It is so hard not living there.
Pancreatic cancer does not have a good prognosis. It is worse than bile duct cancer.
Yesterday I was a wreck. I left work in tears. Today I am mad. Mad that they didn't find this sooner, with all the doctors she has been to and emergency room visits for pancreatitis and pain. Mad that in the hospital they told us that this was something else- and something that they could operate on. And what I don't know is, if the MRI at the hospital was just unclear, or if her tumor has grown since then, and if she would have been a surgical candidate if they had done the surgery right away.
And I'm mad at all of the doctors who didn't want to give her pain medication over the past few months because they didn't see anything "structural" causing her pain on imaging when she really had pancreatic cancer.
Now that has changed. My mother went to see the surgical oncologist and had another MRI. And she has a new diagnosis. Pancreatic cancer. And supposedly this is primary, and it spread to the bile duct. Somehow it never showed up on any of her previous MRI's, except as a shadow on the last one. But now there is a tumor. And the surgeon doesn't think he can get it all out, so there is no surgery.
He does want her to try chemotherapy and radiation, in the hopes that this will shrink the tumor enough to make it resectable. Then would do the surgery. But I don't know what the odds are that it will, or even that it will prolong her life.
I wish that I had been there. They didn't have the presence of mind to ask the right questions. It is so hard not living there.
Pancreatic cancer does not have a good prognosis. It is worse than bile duct cancer.
Yesterday I was a wreck. I left work in tears. Today I am mad. Mad that they didn't find this sooner, with all the doctors she has been to and emergency room visits for pancreatitis and pain. Mad that in the hospital they told us that this was something else- and something that they could operate on. And what I don't know is, if the MRI at the hospital was just unclear, or if her tumor has grown since then, and if she would have been a surgical candidate if they had done the surgery right away.
And I'm mad at all of the doctors who didn't want to give her pain medication over the past few months because they didn't see anything "structural" causing her pain on imaging when she really had pancreatic cancer.
Tuesday, August 4, 2015
Generic Zyprexa
I have been handling the higher dose of Zyprexa, 7.5mg, so much better than I have in the past. I am not as sleepy or flat or tired or even hungry. And I wonder if it is because I am on a new generic. They can vary quite a bit in their potency, up to 20% either way. Perhaps this one is not as strong. At least that is my theory. I hope they don't change generics on me again anytime soon.
The Zyprexa has helped my anxiety and agitation to the point that I am totally off of klonopin. That is a really good thing. I didn't realize how much it was affecting me, even those little bits I was taking. I still feel anxious, it is not like I don't, but I can stand it. I don't have to leave work or crawl into bed or take klonopin.
I am determined not to take anymore klonopin, but I also cannot imagine life without a prn med- which seems really pathetic to say. But having been out of control manic- there was a time I wouldn't go anywhere without klonopin in my purse. Just in case. I guess instead of klonopin I could use a little extra zyprexa if it came down to it.
The Zyprexa has helped my depression but not knocked it out- but I wouldn't expect it to. It is life. I have a lot going on. And it hasn't gotten me off of ambien either as I had hoped. At least not yet.
A part of me is still not okay with the Zyprexa increase- but I am okay with it for now. Maybe if I get to a place where I am getting a lot of regular exercise and have a lot of good things in my life I could take less- but not now. It will have to be. I will get fired if I can't get my notes done again. Curiously I am better with my paperwork on more Zyprexa.
The Zyprexa has helped my anxiety and agitation to the point that I am totally off of klonopin. That is a really good thing. I didn't realize how much it was affecting me, even those little bits I was taking. I still feel anxious, it is not like I don't, but I can stand it. I don't have to leave work or crawl into bed or take klonopin.
I am determined not to take anymore klonopin, but I also cannot imagine life without a prn med- which seems really pathetic to say. But having been out of control manic- there was a time I wouldn't go anywhere without klonopin in my purse. Just in case. I guess instead of klonopin I could use a little extra zyprexa if it came down to it.
The Zyprexa has helped my depression but not knocked it out- but I wouldn't expect it to. It is life. I have a lot going on. And it hasn't gotten me off of ambien either as I had hoped. At least not yet.
A part of me is still not okay with the Zyprexa increase- but I am okay with it for now. Maybe if I get to a place where I am getting a lot of regular exercise and have a lot of good things in my life I could take less- but not now. It will have to be. I will get fired if I can't get my notes done again. Curiously I am better with my paperwork on more Zyprexa.
Sunday, August 2, 2015
Learning to wait
My mom's surgery isn't for another couple of weeks- for reasons that make sense, and yet- the more I read about this cancer, the more I wonder if it was the right decision to wait. And I wonder if the biliary stenting that was done to treat her jaundice was a mistake- if that could just spread the cancer as some suggest (but there isn't good data yet), and if they should have gone straight to surgery. But I don't even know if that was medically an option. Maybe her body couldn't have handled the surgery like that.
The prognosis for this type of cancer is not great, even when it is apparently resectable. But knowing a more precise prognosis will depend upon biopsies of the margins and lymph nodes. If these are clean, it is much better. There isn't a lot of published research out there on whether chemo or radiation help. Some of it is contradictory. It is just such a rare cancer.
Whatever issues I have with my mother, I just cannot imagine her not being there. There was a time when I thought that 74 was old- now it seems so young.
The prognosis for this type of cancer is not great, even when it is apparently resectable. But knowing a more precise prognosis will depend upon biopsies of the margins and lymph nodes. If these are clean, it is much better. There isn't a lot of published research out there on whether chemo or radiation help. Some of it is contradictory. It is just such a rare cancer.
Whatever issues I have with my mother, I just cannot imagine her not being there. There was a time when I thought that 74 was old- now it seems so young.
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