Sunday, July 26, 2015

Hard weekend

I had a couple of upsetting things this weekend and wound up paralyzed, getting nothing done other than a load of laundry. And just now I had an upsetting conversation with my mother, and I want to turn off emotionally.

I believe in alternative medicine- I really do. But it isn't always enough. And when you need surgery, you need surgery.

My mom sort of believes in alternative medicine- but I really think it is more of a way of rebelling against conventional medicine rather than a full understanding of the alternatives. And she is rebelling right now.  I had called to tell her that curcurmin was good to take- that is has been shown to increase apoptosis of cells in bile duct tumors. Although I didn't know if she should take it now or wait until after her surgery.

And then she started going on about all the second opinions she wants- not from oncologists or surgeons but from alternative people. She is not sure about the surgery. She does not want to be pushed into this, rushed,etc. And allopathic medicine is out of date, there are better things out there that can strengthen her whole body, etc.

She doesn't know how lucky she is that this tumor is resectable. Most aren't. What is true is that, even when they take it out, more people than not will have a recurrence somewhere else. But if they don't take it out she will be jaundice again in a few weeks.

Yes I do think she should have a second opinion. This is major surgery with a long recovery. Is it needed? And is she really a candidate for it- is it really resectable?  Or has it already spread too far.

I should never have gotten my airline tickets this far in advance. I don't know if the surgery will take place as scheduled. And I just can't think about it. My mom is very stubborn and rebellious, as well as suspicious, especially when it comes to the medical establishment. I can't make her do things she doesn't want to do, she will just get more stubborn. I have to step away.

Wednesday, July 22, 2015

Waiting is the hardest part

My mother had her knee surgery today and it went well. Now on to the next surgery, the Whipple procedure- but that isn't until mid August. The surgeon wants my mother to get strong before the procedure and be in good shape going into the surgery. That is well and good, but I might not survive until August 17th. I just want the cancer out of her. And I want the answers that won't come until after the surgery- namely, has it spread. Is this cancer going to kill her, or will this surgery be a cure?

Meanwhile I continue to feel like I am going to collapse. I had been attributing it to stress- but now I think it is low blood sodium. It explains the headaches, the lack of concentration, nausea, the occasional muscle spasms, as well as the fatigue that makes me want to go to the ER- but takes so much energy away from me that I can't even call my doctor. I think I have been eating low sodium recently, drinking too much water between the lithium and the hot weather, plus Effexor can cause low blood sodium, and my IBS has been really bad so I have been losing fluids and possibly sodium that way.

So I dragged myself home and have been trying to eat salt. If I don't feel better soon it is probably something else.

And of course I am on the internet looking up bile duct cancer. I have to stop it. I'm no longer learning anything new. And it is so rare that there isn't even a whole lot out there. I didn't even know you could get bile duct cancer! I mean, sure, you can get it anywhere- but I had never given it a thought. I've had my breast cancer scares and I have been on my mom's case for not getting colonoscopies. But I never worried about bile duct cancer. It makes you wonder what is around the corner, and if it will be anything like what we are preparing for.

Saturday, July 18, 2015

What are the odds?

The odds of a specific person having a specific rare or uncommon disease is pretty low. But I decided that there are so many rare diseases that odds are, someone you know will someday be diagnosed with something rare or at least uncommon.

Bile duct cancer is pretty uncommon. I see conflicting reports, but maybe 4,000-5,000 people a year in the US are diagnosed with it. And my mother is one of those people.

My mother was hospitalized for jaundice last week. After a number of tests and a procedure, they found a tumor in her bile duct. I was hoping there was some other explanation. And people were telling me I was being melodramatic and that she would be fine. But by the time she had the procedure I didn't know what else it could be.

The good news is that it does not seem to have spread. And she is a surgical candidate. She will be having the Whipple procedure next month. Hopefully there is no cancer anywhere else. This could be a cure. And yet, it usually isn't. When I look at 5-year survival rates, it is not encouraging.

I am so glad I was there. I was there for the other surgery, for her leg, that didn't happen. But they are going to fix her leg before the Whipple so that she will be stronger. It is a very taxing surgery.

Fortunately I think she has a really excellent surgeon. I was really impressed with the hospital.

It is hard living so far away. I am back here. And yet, I don't want to move there. I just don't. I used to think that she would move here some day- I hate to say this- but I used to think that after grandma died then we might have some good years here. And now my Grandmother might outlive my mother.

Saturday, July 11, 2015

When misery is not depression

My mom is sick, really sick. I am miserable. I have not had one suicidal thought.

Pre-op testing showed that my mom had jaundice. She has had a lot of unexplained digestive issues for months, with a possible diagnosis of autoimmune pancreatitis- but that was never clear. She never had a colonoscopy because of a very long wait- it was supposed to be in a couple of weeks. I can't believe they didn't get her in sooner. Plus she has dilated pancreatic and biliary ducts- which is often seen with pancreatic cancer, only they didn't see any cancer. Still, she needs to follow up every few months because of the high risk.

So now this. I am guessing an obstruction of her bile duct. I just talked to her- the doctor said the blood work does not suggest autoimmune pancreatitis. And that was one of the better options. Now I am scared. She had an ultrasound yesterday, an MRI scheduled for today.

I have my tickets for Tuesday night- for the surgery she was supposed to have on Wednesday. It isn't going to happen. But I'll go anyway.

Thursday, July 9, 2015

My dad is okay, now it is my mom

My dad is out out of the hospital and fine. Now it is my mom.

I was visiting her- I had some time off- and we were walking down town and she tripped and fell on the sidewalk. I asked her if she could get up and she couldn't- she couldn't put any weight on her leg. So I had to call 911. What did we do before cell phones?

There was an ambulance ride and a trip the the Emergency Room. It turns out she has a broken patella, and it is displaced so unlikely to mend on its own without surgery. She is on coumadin so they can't do surgery right away- she was discharged with a knee immobilizer and crutches which she couldn't use and a walker that I asked for.

I spent the next couple of days in full OT mode, trying to get her walking with the walker and transferring as best I could. It still wasn't good. And getting into and out of the house- which has steps- was a nightmare. I ordered a wheelchair ramp (from, of course). She lives with her mother and sister- so she doesn't live alone. I hope they can manage with her until next week. Fortunately they already had a wheelchair and raised toilet seat with bars because of my grandmother, along with a tub bench.

Wednesday she has her surgery. I am back at work, but got the time off to go back for the surgery. I have a flight late Tuesday night after I see most of my patients. Fortunately my schedule is pretty light this week- it was totally crazy not too long ago. But by late summer it gets really light. Then it picks up again in the fall.

I need a vacation from my vacation. I think I am going away in the fall- I just have to hope that no one else gets sick or hurt.