Demystify the stoma

I’ve decided I have earned the right to claim some phrases and coin some new sayings. To reclaim the language for ostomy patients everywhere. Maybe encourage everyone to adopt new colloquial language in the interests of demystifying the stoma; celebrating that little nub of gut that separates we few from all those everyday assholes out there.

Next time that twelve year old working at Rona tells you caulking and grout are the same thing, he’s not a dumbass, he’s a dumbostomy. The guy that cuts you off merging onto the freeway is just a colostomhole. When you are up to your ileostomy in alligators, its hard to remember you came to drain the swamp. Some people just need a good swift kick in the stoma.

So whenever you run across an ass related frustration and it feels like the old stand-byes have lost there punch, you have our permission to substitute the new ones our GI surgeons have cut for us. Just don’t be stomanine about it.


Catching up

I have no more excuses. It is time to sit down and write. I think losing the post I wrote last Tuesday had a depressive effect on my desire to express myself literally, literally. Or, a computer glitch pissed me off.

So lets retrace the week as best we can.

Tuesday: My sister Shirley Crawford and I got an early start so we could see my doctor at his drop-in clinic where it is first come first drugged. I needed to have the staples removed from the zipper in my abdomin and to get my Oxymorphone prescription renewed. Giving ourselves plenty of time, we arrived at his clinic a good 2 hours before we had to be anywhere else. It was closed. Not for the day. The building was for lease. Nice. The sign on the door explained that he had moved to another clinic up the road a few blocks.

Up the road a few blocks we were welcomed by who is possibly the least appropriate person ever to manage a medical venue. If I remember correctly, her nametag said Miss Dongivashit. I explained my needs and informed her how busy the rest of our cancer clinic day would be. She said, “no, Dr. Blane did not bring your file with him from the other clinic and you will see him in about 2 hours if you wait here”. I explained again that my cancer clinic appointments were kinda important and asked how we might still see Dr. Blane at some point. She said to call when I was done at the hospital and she would put me on the waiting list then. That, I figure, would save about three minutes; the time it takes to drive to the clinic from the hospital. Shirley dubbed the place “The Bitch Clinic” and we left for the hospital.

So we arrived at the blood clinic over an hour early. No problem. The pre-teen student nurse introduced herself and asked if I would mind if she collected my samples. I quickly checked her hands for the nervous jitters and concluded she was probably ok. I told her my delicate veins are sometimes difficult for even the most experienced bloodletters. Then checked her hands again. Now she was nervous. I thought seriously about suggesting the real nurse take over at this point but one glance at her and I was pretty sure she wasn’t nervous but woudn’t hesitate to go on a deep vein drilling expedition in retaliation for undermining the confidence of her student. “You’ll do fine!” I assured the twelve year old. She did fine. Better than many experienced nurses.

Now we were over two hours early for my oncology appoinment so I figured I would stop by the outpatient daycare and see if they would remove my staples. Yes they would. I just needed to get a doctor to tell them to. So it isn’t yet 10:00 when I arrived at the oncology clinic to tell reception I have an 11:40 appointment but would like to talk to Dr. Shan (the medical oncologst) now so that I can go back to daycare. She won’t be in until 11:00.

Which brings me to the most pleasant part of my day. I remembered that the radiation oncologist, Dr. Rose, told me at our last appointment to call him if I needed anything. I called. As I was explaining the situation to his office, the man himself walked through the door. “I can do that for you”, he said and ushered me directly into an examination room. He snipped, tugged, slipped and shrugged, “sorry”, for ten or twelve minutes while I, in turn, laid, winced, shook and laughed, “its ok”, and the staples were gone. He said it was great fun doing something he hadn’t done since his surgical rotation as a medical student. As soon as he was done, and now that he know my surgery had happened, he said he was going back to his office to check the necropsy results. As I understand it, the tissues removed by Dr. Brown went to a biopsy team that will slice, dice, scan & test the bits and learn all kinds of cool stuff about my particular tumors. One of the things that can be learned is just how well the radiation worked its magic. Dr. Rose just had to go have a look right now. I guess its kind of his tumor too. I love that guy.

Shirley treated me to a latte and a cookie while we waited for the appointment with Dr. Shan. We won’t be doing any chemo until at least a month after the surgery, so early March. Even then, there is one drug in particular she can’t give me in the first round because I am still healing. She figures four to six rounds of chemo (that will be 8 – 12 weeks) then more scans for the the benefit of the liver surgeon. If the tests show that he can operate, that would be at least a month after chemo ends. So we are most likely looking at July sometime. Dr. Shan kindly but reluctantly, renewed my morphine so we never did need to return to The Bitch Clinic.

However, Dr. Shan did notice I was due for a port flush so what already seemed like a long day got a little longer. Then it got a lot longer. If they don’t use my power port to deliver poisonous chemicals to my bloodstream for a month, then they have to wash it out with a couple big syringes of saline. No big deal. Unless my overzealous platelets have decided to heal the exposed end of the pipeline running from the port into my jugular. My platelets, even while discouraged by daily blood thinner injections, will tend to do that. The nurses had to squirt a couple ccs of clot buster fluid into the port and leave it there for an hour. Shirley and I went to the pharmacy to get my drugs, returned to the hospital to complete the flush and got home around 4:00. It wasn’t the longest day by most people’s standards but we were both exhausted.

That, my friends, replaces the mysterious disappearing post from last Tuesday and is just about all I can manage to do today. It isn’t the week I sat down here to write but my bum hurts from sitting here so I’m done. I don’t know if it is as good, bad, accurate or as interesting as the original but it feels good to have it done. Now, to just click “post” aaaaand …

Not a good night

Terrible day yesterday. I meant to rewrite the mysterious vanishing post but somehow never found the time or energy between all the diarrhea, puking, crying and writhing in pain. The cause is another mystery. Maybe I ate something I shouldn’t have but, more likely, my body is trying to reject my body.

This morning I’m feeling fine but weak and managed, with Wendy’s help, to have a shower. Funny how it feels so good just to not stink.

Sister act II

The tag team passes the baton. It’s been so relaxing and pleasant to have my big sister Evelyn Henkel here the past 5 days that I feel quite thoroughly spoiled. You and Kelsey and that beautiful baby girl have a safe trip home, Evelyn.

The next few days with Shirley don’t look to be quite as relaxing. She arrived with sets of Urban Poling poles and a determined look on her face. It seems I will be getting the exercise prescribed as part of my recovery. I must admit, the short practice hike, a very slow one, shows some promise. There is definitely something to this. I could tell it increased my pace, lengthened my stride, improved my posture and took pressure off my lower back. I might look like a absent minded cross country shusher who lost his skis, but I think this might do me some good. Check it out?…

Phantom poops

I have phantom poops.

Like losing a leg and having itchy toes later, I get that feeling of slight pressure that comes just before the urge that says, “get thee to a toilet”. From what I understand, the lower bowel still works even though no food gets to it any more. Still absorbing water and producing mucosa and churning around but any gasses and such actually go out the ileostomy. It works from both directions!

I’m a little stronger and have a little less pain every day now. By June or so I’ll be Superman if they don’t stop me soon. Thankfully I won’t have to wear the silly blue tights and red cape. They intend to start pumping me full of chemicals again on the 14th, so that should put an end to this “improving” silliness.

I’m having a lovely visit with one sister and have the other one coming for a few days starting Saturday so may not be posting on here as often as I would like. Please don’t feel neglected my friends.

Tea time! Later, my friends.

Stitches and sisters

Very excited today. My sister is about 5 hours into her 13 hour trip to come for a visit and the weather is cooperating. This will be an awesome week.

My stitches are healing up nicely and sitting up hurts a little less each time. Walking around the block still takes it out of me but it takes less rest and blueberry juice to put it back in. Now I’m not bragging or being over optimistic, so the cancer gods don’t need to assert corrective measures. I’m just particularely happy today and looking forward to a pleasant game of Scrabble with my sister.

I hope everyone takes a few minutes to just enjoy the outdoors today. I am.

Morphine is my friend

We’ve all been out in a blizzard or caught walking in a sudden pounding rain. Maybe challenged a long hard day of work or play and pushed the limits more than a little. What we remember best about those times is reaching the warmth, shelter, comfort and great food of home. What a wonderful, deeply meaningful word; home. I have never been so happy to wake up there.

I brought some things home from the hospital that I would rather have left there. Pain tops the list but it is so common now as to be normative. And I have opiates. The strange dreams are a mixed evil. I woke in the night to Stephen Colbert’s monologue amid images of my inner body parts magically changing places and shifting in and out. Later, those images included tiny mechanical replacement parts. My mind tells me there is a cure for cancer hidden in there while warning that it can’t be found among the confusion. The physical spasms caused by (or maybe creating) the dreams are not nice to wake up to when you’ve overslept your morphine dose.

I overslept my morphine dose. Overslept it. What I am telling you is I slept something like 6 hours. Be awestruck. I am so very happy to be home.

A very important lesson for today. Next time you get home from a week in the hospital with a brand new ileostomy and a sore bladder, make damn sure you drain both thoroughly before you enter your own warm comfy bed. You may oversleep your morphine dose and wake up with bulging bags inside and out. A very painful trip to the bathroom. It was worth it.

Something is missing. For years there has always been at least a slight discomfort when I sit down. Not always something I would even describe as painful. Just not comfortable. Its gone. Noticeably absent. A strangely wonderful feeling, or lack of feeling.

There are few things I dislike more than dwelling on the past, but today I am going to indulge myself. If I had only taken notice several years ago that I was wincing when I sat, riding a bicycle was uncomfortable, my stools were flat and ribbon-like. If I had simply listened one of the times I heard that men of a certain age should get a colonoscopy. Well,
listen to your bodies, people. Listen closely. The most subtle and gradual changes can have a lot more meaning than you might think. All you guys over 40… get tested. Go to a doctor and let them stick a camera up your ass. It might save you a world of hurt.

Indulgence complete. I’m going to go for a walk now.