Monday, March 22, 2010

Finishing a thought...

I couldn't finish my thoughts last time.  I started on a big idea but couldn't get the thoughts out before I ran out of steam.  The ideas that generated those thoughts is fading and therefore the impetus to write about it.  And thank god.  I became aware recently that I am tired of suffering.  Maybe the only way for it to stop is for me to give up.  I began to wonder if I'm ready for that yet.

I think I have accepted that my life will be shorter than originally expected.  We talk about travel or vacations and i stop myself before I have to say "if I live that long."

I am also just plain tired; i mean sleepy.  i'm going to hit the hay as my dad always used to say.  I just couldn't leave this thought from last time unfinished.

Sunday, March 21, 2010

Still here...still fighting?

I have spent most of the last three months in the hospital.  I have tubes coming out everywhere: a colostomy, 2 nephrostomies, a G tube and a PICC line.  Sleeping with all those tubes is bad enough.  Lately I've been bleeding from my bladder.  Urinating blood clots is a unique experience.  It feels like one is passing jello.

Enough of the litany of complaints.  It is understood by anyone who glances at this that this reality sucks. 

There is hope.  My doctor wants to operate and relieve the bowel obstruction.  I may still need IV nutrition when they are done but I should have less pain and I could eat.  Food.  I could put food in my mouth.  I want that bite of an italian sub where all the meet and cheese are pressed together moistened by the tangy dressing and crunchy lettuce.  I just want the end off of a Ho-Ho.  Is that the one I want?  The chocolate cake cream filled roll covered with chocolate?  That's the one.  Pulling the chocolate off the end with a little of the cream with it is the best part.  Hot french fries.  lobster and butter.  PB&J made with strawberry jam.  You get the picture.

Before surgery was on the table I was starting to get tired.  I was counting my days and starting to pick dates that i wanted to live until.  Fear and grief accompanied this exercise of course, but also fatigue.  It has been months of unmitigated pain.  Although I am young and therefore treatment should be aggressive, it is wearing me down.  One of the nurses complimented me on my strength to go through all this.  I said, "well, I'm young with young kids.  What choice do I have?"  She told me some women in my position still gave up.

In a way this was frightenining.  I don't want to be unique in my ability to suffer.  I want lots of people to have gone through what I am and survive.  Let this be ordinary.  Maybe, just maybe it is ok to give up?  Am I at that place yet.  No I am not.  I feel as though another door has opened in this process which I'm not ready to walk through yet.  Oh god, another metaphor.

I had more to write here but i am too distracted now.  Gonna go finish my walk.

Saturday, September 12, 2009

More bags than a recycling center

I was back in the big house again.  I had another bowel obstruction.  They seem to hit on Friday mornings.  By 9:30 I was in too much pain to see patients.  By 10:30 or so I was home puking in bed.  I went into the hospital an hour or so later.  The upside of all the puking was that it decompressed me enough not to need the NG tube into my nose and stomach like last time.  Things resolved on their own.

My kidneys are another story.  They've been getting progressively blocked and started to fail a little in the hospital.  Not really renal failure but mild insufficiency and some electrolyte abnormalities.  I so desperately wanted to go home but even I had to admit a potassium of 3.0 was worth sticking around to get fixed.  I am home now with bilateral nephrostomy tubes.  They stuck tubes into my kidneys through my flanks and hooked them up to bags at my waist.  If I thought the ostomy bag was intrusive it's nothing compared to these babies.  the tubing fully stretched hangs to my feet and each bag can hold 600 cc's.  As my husband puts it, that's almost 2 beers.  If you want the funny version of this story go to drbifsworld.blogspot.com for all the details.

While getting chemo yesterday a nice lady gave me a manicure.  She did one hell of a job.  She needs a new eyeglass prescription.  For all her shmearing around they ended up looking ok.  She was a hoot to talk with.  She's a sephardic jew, very old school.  We have  a mutual friend who is dying of uterine cancer.  My manicurist was one of those annoyingly optimistic people who believes in the power of positive thinking.  I think people who believe in this have never had anything really catastrophic happen in their lives.  Either that or they are just stupid.  Forgive me G-d.

She mentioned the book "The Secret" which several well meaning people have told me about.  It tells you that you will get what you most desire in life if you just wish hard enough for it.  Then cosmic forces will magically align to make it happen.  Uh huh, sure.

Now to give these people they're due I have managed to make the things I wanted in my life happen.  I became a doctor against some unlikely odds such as nearly failing intro chemistry in college.  I married the love of my life after spending my entire young adulthood devoid of any meaningful relationships or even good sex.  I even learned to sing a solo after years of stage fright.  But I don't think I can wish this cancer away. 

When I was about 13 I became immersed in the books by JRR Tolkien just as that crowd is obsessed with Harry Potter today.  I finally read one of the books.  JK Rowling's got nothin' ol' JRR.  I remember wondering if I could go to Middle Earth.  If I thought about it hard enough and wished for it hard enough could I just go there?  I'd moon out the window at night, staring at the full moon and try and commit my mind to leaving everything I had to go to this fiercesome place.  I couldn't do it.  I couldn't let go.  It was not that I wasn't stupid at that age and new that however fantastic the story sounded to read it was probably hell to live through (as all good adventures are).  I just couldn't let go completely.

I'm not sure it's the same now but i can't bring myself to a place where I can wish the cancer away or pretend it doesn't exist.  I think it is because if I fail I would be devastated.  This is the failure of this "Make a Wish" doctrine.  If your great wish does not come true it must be your fault for not believing enough in the positive force of your dreams.  I don't need guilt along with my suffering.

I will continue to live, not as if I don't have cancer.  I will continue to live life despite the cancer.  I will continue to look for clinical trials and aggressive treatments but I will also continue to work and spend time with my kids and have fun.  I will try, it is hard, but I will try every now and then to forget.

Tuesday, July 28, 2009

The world absolved of thinking first.

I have every right to feel sorry for myself. I am a 43 year old woman with a great marriage, 2 beautiful kids and a satisfying career and I am dying. What does it mean to be dying? Despite having cancer for almost 6 years I've never given the question much thought. There is the philosophical loss of hope, resignation, anger, self pity. All of that is to be expected. But what does it feel like to be dying?

Obviously it is different for everyone. For me it is a slow ebb of my health. Those moments free of discomfort become fewer and fewer. I'm having a pretty good day today. In fact, compared to some I am quite healthy and energetic. In the last few months however, I feel as though the fabric of my well being has been jabbed with a pencil point in several places. I am rarely without some kind of gastrointestinal issue. From the radiation I am bloated or cramping or having diarrhea or reflux. I have paroxysms in my rectum as the stored up mucus tinged with blood, smelling just like old mucus with blood in it would smell, decides it must exit my body whether I can make it to a bathroom or not. This occurs several times a day. I urinate constantly. I have not been dry for over 60 seconds in months. I urinate, take a shower, urinate again and get dressed. As I lean forward to pull on my pants I feel about a teaspoon full leak out. Where the hell is it coming from? I have learned never, ever to be without a pad. I carry them everywhere, in my purse, my knitting bag, in my desk, in my car. I have lost all modesty and care not one little bit who sees them.

My colostomy has made some of the digestive issues easier. I can see a patient while having diarrhea. It brings multi-tasking to a new level. I hate changing the appliance. If I'm not careful liquid poo will shoot out with no warning whatsoever. At least it's not like real poop with that special aroma. It's more like digested stuff, only marginally better when I reflexively put my hands down to catch it before it spatters all over the bathroom floor.

Lately the skin around my ostomy has been a problem with irritation and bleeding. Here's the point of this whole thing. I called the medical supply place for some suggestions and yes, I whined a little. The woman helping me admonished me, "now, now! You're still here!"

That's just great. I shouldn't feel bad about all this crap; I shouldn't complain that I will never truly feel healthy ever again; I shouldn't pity myself because I have started to fall into the abyss of death because I'M NOT DEAD YET?

Who's day was made better by that statement?

That's all I've got for now.

Dr. Bif

Monday, June 29, 2009

A glimpse of my future?

I've been hospitalized again. I developed an acute bowel obstruction at work. The cramps started as I finished up with my second patient of the morning. They were bad, very bad. I went around the corner in the office not sure how dramatic I was being. I told myself as one came on, "I will not make noise, I will not make noise." Still little grunts came out. I was crying and shaking by the time I got over here to the hospital. They got me a room right away. By the time I was in a gown and into the bed I was yelling in pain. I've been through a lot but I've never done that.

Finally the dilaudid was in. It was like being wrapped in a warm blanket and I could breathe. Not for long, I threw up once and then Mr. NG tube came along. One nurse held my head while the other rammed that thing down my nose and into my stomach. Excrutiating. Not sure how much good it did initially since I threw up 2 more times.

Why am I telling you all this? I was sent for a CT scan which showed what we expected, a pretty good obstruction. One of the nurses asked me about it. They didn't know I was obstructed from adhesions and radiation. They thought it was tumor. I guess most women with bowel obstructions come up here to die like this. Oh my god.

As I get better now I think of putting another foot in the abyss. For years I have been sleeping at the edge of the abyss looking down on the death that will come. Sometimes I can only see the edge some times I can see in from where I lie. This time I put a foot in. Water's a little chilly for me. I don't want to die like that.

Tuesday, June 2, 2009

conversation with a friend

this is part of a conversation I've been having with a friend. she's struggling after several years with the tragic death of her mother and I'm, well...just stuggling.


Wow, J. I was floored by the story of your mother's death. I keep imagining you driving as fast as you could, praying and hoping. I imagine getting the news and what that devastation must have felt like. that your mother died is bad enough but the traumatic circumstances of her death are so awful it isn't surprising at all to still feel that raw grief. it's only been a few years. I know a little what you must feel. My sister had an MRI because like me she's BRCA1 positive. they called her to give her the results and just left a message for Katie to call back. she called when their phones were off and left a message. Phone tag, you're it! They never called back to give her the message that she needed to have more views because they found something. Katie figured they'd call if there was a problem and forgot about it. She found the lump 6 months later. at this time it was node positive and ER negative. she had bilateral mastectomies, chemo and radiation when she could have just had surgery and been done with it. she had a bunch of complications resulting in an infected seroma and lost one of the implants which can't be replaced because of the radiation.

when she got diagnosed I was so angry at her for not following up and then angry at Dana Farber (where the blame really lies) and then just mad period. luckily she's done well since so for me the grief is gone but i remember feeling so impotent when it first happened. i kept saying "if only she had called...if only they had called..." I can't imagine what it must have been like for you. You have high expectations of yourself to "handle this well."

Some wounds only heal with scars. we are changed forever. I feel that way about John. I'll never accept that he had to die. it was a useless death. at his memorial we all sat around trying to figure out who, if anyone, knew that he had AIDS. We don't think anyone did. I suspect John didn't even know until he got sick. He died in October but had been hospitalized with pneumonia in August. I'm guessing he came down with PCP and that was the first anyone knew about it. he probably was discharged and went home stopping on the way to buy a pack of Marlboro Menthol Lights. Those last few days must have been so dark for him. he died alone. His father was coming to pick him up for a trip to Vegas and found his body. I think he'd been dead only a day at most. His friend A. wrote a eulogy that I read at his memorial and I emailed her to see what she knew but she never answered any of those questions. she's a big TV star and gay and not out of the closet so I think she was protecting her privacy. I guess I'll never know what really happened to him.

Phew! it's been a while since I've thought about all that.

Are you angry? I'm angry these days. I'm pissed off at my whiny patients who have no idea what pain and suffering are. Between recurrences of the cancer I could pretend or forget that I had it because I was healthy. Now there are reminders every day with the ostomy and the incontinence (probably the worst reminder) and the radiation enteritis. I have to work at being my old self. it's hard. I don't know that I feel picked on, or that this is unfair (it is); I'm just pissed off. A day doesn't pass that i don't think about dying of this because eventually I will. No one knows how much time they have; I get that but I feel like I've been shown most of the cards and they aren't good. My autistic 7 year old is struggling with understanding what death is because we just lost a little frog and buried it in the back yard. he doesn't have the language to have a conversation about it. How is someone going to explain to him that his mother died? it's so awful i can barely type that last sentence without bawling (and I am).

I haven't been to synagogue in a while. it almost makes me sadder to go. it just doesn't seem to help right now. I wish I believed in something after death but even that doesn't help me feel better about those left behind.

Well, this is depressing for a Tuesday. I'd better sign off so I can go pick out flooring for the kitchen. Life goes on.

b

Saturday, May 30, 2009

Death of a foodie.

When we first moved here to Pittsford one of the major draws was the local grocery store. It being the flagship store of the chain it is a veritable Taj Mahal, a palace of food. The blue cheese bin was bigger than the entire cheese selection at our local Schnuck's in Missouri. I was in heaven. It actually hasn't turned out to be the culinary mecca that I had dreamed of but it's not bad. For several years now I have tortured my family with the evening meal way too late because I can only seem to make elaborate dishes. I have stacks of cooking magazines next to my bed which I read cover to cover, even (and especially) the weird ads in the back. We got cable so that when I was laid up after my first surgery I could watch the Food Network and public television cooking shows. Those days are over. Le Foodie est mort.

Don't get me wrong. I still love food. I just can't eat it. The two rounds of pelvic radiation I've had have destroyed my gut. In addition to the really special bloody mucous I discharge a couple of times a day from the little bit of rectum I still have (why do they leave it there to do that? why not just seal the passage and put up a No Trespassing sign?) I have an ultra-sensitive digestive track. It's called radiation colitis (in my butt) and enteritis (everywhere else). A spinach walnut wrap I ate for lunch yesterday made it through in four hours. Collard greens whizzed through apparently completely unaffected by the digestive process. The speed with which vegetable matter is propelled through the tubing is also accompanied by large volumes of gas. Enough that if a weather balloon was attached to my stoma instead of the decorative, putty colored bag I'd have hit the jet stream by now and be somewhere over Greenland.

Well so what, right? Just a few more trips to the bathroom during the day. The bloating is horrible and diarrhea is still diarrhea even if it flows unimpeded into a bag at one's waist. It hurts. My gut doesn't suffer in silence either. Several times this week I was in an exam room with a patient when the stoma erupted with the most embarassing squelches. I slap my hand over my abdomen to quell it but as soon as I remove it the squelch finishes what it started. Like I said before, it's got to go somewhere.

You'd think I'd be losing weight with this since in addition I can't eat the volume I used to; I fill up quick. No, I manage to find the calories somewhere. there's no justice. If I have to have chronic cancer, why can't I at least look fashionably gaunt?