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.

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.

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.

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 Amazon.com, 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.

I don't want to think that my parents are old, or mortal

Pneumonia is an old man's killer, and my dad just got admitted to the ICU with pneumonia. My stepmother is there and I will go in the morning. So much for yoga I can't help thinking- I was on a roll with getting myself there... I can't help thinking this is a really bad weekend, I need to get so much done. And I can't help wondering how severe it is, and how he will do, and what this will take from him. He has had two cardiac surgeries in the past few years, and both took him a very long time to recover from and to be himself. I am worried.

Normally he is a pretty amazing 84-year old who works out with a personal trainer and is sharper than I am. But he is still 84, and no one gets out of here alive.

If I don't die an early death then I will outlive my parents. I will be an orphan. Someday. But not today.

I quit therapy

I left a message on my therapist's voicemail. I didn't think I had been seeing him long enough that I had to do it in person, and I was glad that it went to voicemail and I didn't have to actually talk to him.

I tried to be very pleasant. I guess I still have memories from the time I left an angry message on my psychiatrist's voicemail and the police and an ambulance show up at my door. I didn't want anything like that happening! I didn't even want a return phone call, and I didn't leave my phone number deliberately. He hasn't called back. I don't know what therapist etiquette is- if someone quits over the phone, are you supposed to call them back? I don't know.

I have thought a little about going back to my last therapist- but even if I had the money I just can't imagine spending $125 a session when I no longer have any out-of-network benefits. So I think I will go without for now. I don't have the patience to keep trying out therapists.

I think I was in a better mood today. Still struggling with anxiety/agitation, but not nearly as much as on the 100mg of Lamictal. I am taking little bits of klonopin- so tiny that I think half of the effect is placebo, and that is enough to take the edge off of things. I feel more awake, more alive. It is good. I am not feeling despair. I did not wish to be dead today, and that is an improvement.

Latest interest- winning the New Yorker cartoon caption contest

I wasn't going to say obsession- that is so in these days, to say something is an obsession, just because you are doing it. And I am not quite obsessed. Just determined to find something funny to say once a week no matter how difficult it seems.

My half brother is a writer and does the New Yorker cartoon caption contest. Then my brother started doing it. So I decided that I had to start doing it. I have just submitted my third entry. And it was good, except that I put an unnecessary "that" in it. I wanted to redo it but I can't. I am still impressed with myself that I managed to find something funny to say with this one, because initially I wa stumped. But as with all that I have done so far- I just pull from current events.

I wonder if, between the three of us, any of us will ever win? A lot of the winners aren't even funny- although the last winner was very good, in fact pretty perfect.

I really wish I could redo my entry. I did it so fast- not thinking I should take the time to edit a one sentence entry. But I am wordy, so I need to. It will never make it as is. I will take more time next week.