That's Bertie Wooster's typical greeting. We have been watching Jeeves and Wooster on Netflicks. Light British comedy that we can highly recommend. Especially if you are a fan of House because Hugh Laurie, the main character in House, is one of the main characters in Jeeves and Wooster except he is about 30 years younger.
It has been a while since I have posted. Time was taken up with finishing some Christmas projects. My energy was flagging and I had quit a bit discomfort with nausea. Medication helped take the worst of the icky urpiness away but one gets tired of tasting puke everytime one has an eruction. Plus there has been time taking up with processing.
The Monday before Christmas we were in Duluth, meeting with the genetic counselor. It was her job to tell me what I already knew; that my cancer was hereditary and not just limited to the tumor. I knew that in the same way I knew they would find a tumor back in May. This means my daughters and siblings have a 50% chance of inheriting Lynch Syndrome and if they test positive for the Syndrome, then they have to actively monitor for various cancers throughout their lives. Even though I cannot get colon cancer ever again, I do have to consult with my oncologist and primary care doctor, to set up plan for screening for other cancers. Lynch Syndrome can produce colon, endometrial, ovarian, stomach, kidney/urinary tract, brain, biliary tract, pancreas, small bowel and sebaceous adenomas. The list is too damn long.
In our first visit with the genetic counselor we tried to give her what we knew of my family medical history. I was handicapped when it came to Orville's side because Mom never talked about him. I mean never. And the little bit I know about mom's side is a perhaps a bit sketchy too, but certainly not encouraging. Mom's sister died of colon cancer (I think) and her brother died of brain cancer and mom had a bout of colon cancer in her 80's and maybe had breast cancer when she was younger. Grandpa died of pancreatic cancer and all the time I thought Dad died of cirrhosis of the liver it is possible he died of liver cancer.
Whatever. I know what I had and I know what I have to look for in future screenings. And that is not something I look forward to at all. On one level the idea of having to deal with more of this shit really makes me mad. NO ONE wants cancer once, let alone a second or third time and I am tired of dealing with what we are going through right now. Enough is enough and I want, we want, our lives back.
Like I said, we are processing. Karen and I know we have to make our life work, even with the knowledge we may have to face cancer again.We know we have to live our life, creating a place of joy and hope and peace and love. We have to go on: there is no other way.
Yesterday was my fourth of eight chemo treatments. I know it is too early to start looking toward the end. The long fat part of this goddamned portage is still ahead and the end is nowhere to be seen. Not from this point, not yet. I personally know people who have it way worse than we do; people who are in their third and fourth bouts with cancer and they are still fighting. So I can complain a bit, but I can't give up.
Karen got me my own drum for Christmas. Up until then I had been using a drum loaned to me by Lisa, to aid me in my healing process. The whole story is pretty interesting and maybe Karen will tell it at another time. This new drum, my own drum, has a very thick bull hide and I can whale on it which is proving good because in my drumming I often find I am releasing a lot of anger. The volume and rhythm increase- fasterlouder, fasterlouder, FASTER/LOUDER, FASTER/LOUDER.FASTERLOUDER!!!!!!!!!!!!!!! Sometimes I wonder when to stop drumming. Sometimes I wonder if there ever will be an end; a place from which we can both look back and say "Now it is really over".
Peace and love,
Mike
Wednesday, December 30, 2009
Saturday, December 26, 2009
Winter has arrived
Christmas at Whiskey Jack Flats was quiet. Fall finally gave way to winter in a matter of hours. Here's what we look like this morning.
Peace
Karen
Wednesday, December 16, 2009
Laughter in the Infusion Lab
Today was chemo day. Third round with five more to go. Nearly halfway there. During Mike's first round of chemo we didn't spend much time at the infusion center. It was a pretty quick in and out type of thing, maybe taking all of an hour on a long day. A flurry of activity: weight, lab, standardized "how are ya?" questions followed by short wait before his pump was hooked up. This time is different; we spend about 4 hours at the center.
It's not what you might think. No room crammed with rows of chairs filled by gaunt looking ghost people. There isn't anyone moaning in pain, nobody's trying to hurl up an intestine in the next room, people aren't being wheeled by in chairs, looking like death. Oh, occasionally there is somebody with an obvious head rag on due to hair loss and another looking Minnesota winter pale, but for the most part the people look like you or me.
The infusion center is bright with private rooms; some with windows and all with a curtain at one end for the occasional privacy. There are reclining chairs, TVs, DVD players, phones and a computer on the wall. There is a lounge with books, games, coffee, juice, and a snack machine. The sound of The Price is Right comes from one room, Christmas music from another and most surprising of all laughter. The nurses laugh, the patients laugh and those accompanying the patients laugh. Surprising huh? People fighting cancer laughing. Laughing!
Mike laughed at chemo today (something I said I think). He laughed that big loud laugh that he is most noted for. The one that Trish lives for. The laugh that makes him throw his head back and makes me laugh with him. This is astounding. Laughing and life inside a chemo infusion center. It's clear that there is too much TV drama depicting chemo patients as albino raisins with wisps of hair and toothpick limbs, permeating our collective brains. Cancer used to equal death. Chemo was just something used to "give ya a little time to get things in order" back in the day. Least that was the way it seemed. A few people got lucky and lived for a long cancer-free time after but most, it seemed, didn't. Today chemo is something to "give ya the rest of your life." And that's what all those people who are taking chemo are doing there, claiming the rest of their lives and living it in the process. Including us.
Personally, I gotta tell you I was petrified of Mike's chemo and I'm still not really excited about this go of it, but those people today, all those living lives, looking good, smiling and laughing, well they give me hope and strength. There is life after cancer but there is life with cancer too and when we can laugh about it....well good for us.
Peace,
Karen
PS: Of note is that I beat Mike at two games of Scrabble during chemo today though he's gonna tell you I cheated on the second game.
Thursday, December 10, 2009
"B" Stands for ...?
Thursday night and Karen is at work so I am on my own for supper. No hardship though. Tonight I am cooking comfort food: stir-fry venison with onions, garlic, carrots from the garden and celery. Brown rice tossed in and topped off with chowmein noodles. Yum! Yum!
The first time I ever ate anything like this was over 30 years ago when my friends Curt and Larry rented a shack north of town. The shack was one of many 'rental' properties owned by Old Man Fairbanks and his wife. Lots of college kids paid rent to the Fairbanks. The old man was a huge man, hulking in appearance but not threatening. His wife was tiny, quiet and wore a scarf on her head. The shack is now gone but used to be up near Red Pine Lane. Curt and Larry thought they were in hog heaven. The had a hand pump outside, an outhouse, a cold drafty shack with about 3 low-watt bulbs and a tempermental woodstove. Curt was an accomplished camper and backpacker but he grew up in West St. Paul. Larry, grew up on a farm in the Red River Valley. When Old Man Fairbanks learned Larry was a farm boy he clapped him on the shoulder and said "they'd be all right".
Being a farm boy meant he had lots of homegrown beef, especially burger and that is what Larry used in the first stir-fry I ate. I still remember those meals as being some of the best and it is the memory of the food that keeps me cooking my own version after all these years.
It is not just the comfort aspect I am after tonight. I apparently have some kind of intestinal distress and I remembered the acronym BRAT, stood for ???, Rice, Applesauce and Toast. Damned if I can remember what the B is supposed to stand for but I substituted beer instead. My tummy has been yucky all day and our trip to the Cities yesterday did not go off as planned because of the 'blizzard' and because I was really sick yesterday morning. I feel better today except for my tummy. If I had a complete gut I would probably have the shits or something nasty. As it is, I have my own ostomy version.
Being sick is no fun. Everyone knows that. Our concern is that this is a new chemo related side effect. In that case, we have lots to look forward to over the next few months. The best case scenario is that I got a touch of the flu; maybe because my blood counts are low or something. Well, the beer is getting warm and the stir-fry is getting cold. I still don't know what the B stands for though...
Peace,
Mike
The first time I ever ate anything like this was over 30 years ago when my friends Curt and Larry rented a shack north of town. The shack was one of many 'rental' properties owned by Old Man Fairbanks and his wife. Lots of college kids paid rent to the Fairbanks. The old man was a huge man, hulking in appearance but not threatening. His wife was tiny, quiet and wore a scarf on her head. The shack is now gone but used to be up near Red Pine Lane. Curt and Larry thought they were in hog heaven. The had a hand pump outside, an outhouse, a cold drafty shack with about 3 low-watt bulbs and a tempermental woodstove. Curt was an accomplished camper and backpacker but he grew up in West St. Paul. Larry, grew up on a farm in the Red River Valley. When Old Man Fairbanks learned Larry was a farm boy he clapped him on the shoulder and said "they'd be all right".
Being a farm boy meant he had lots of homegrown beef, especially burger and that is what Larry used in the first stir-fry I ate. I still remember those meals as being some of the best and it is the memory of the food that keeps me cooking my own version after all these years.
It is not just the comfort aspect I am after tonight. I apparently have some kind of intestinal distress and I remembered the acronym BRAT, stood for ???, Rice, Applesauce and Toast. Damned if I can remember what the B is supposed to stand for but I substituted beer instead. My tummy has been yucky all day and our trip to the Cities yesterday did not go off as planned because of the 'blizzard' and because I was really sick yesterday morning. I feel better today except for my tummy. If I had a complete gut I would probably have the shits or something nasty. As it is, I have my own ostomy version.
Being sick is no fun. Everyone knows that. Our concern is that this is a new chemo related side effect. In that case, we have lots to look forward to over the next few months. The best case scenario is that I got a touch of the flu; maybe because my blood counts are low or something. Well, the beer is getting warm and the stir-fry is getting cold. I still don't know what the B stands for though...
Peace,
Mike
Tuesday, December 8, 2009
Bicycle Riding
They say, once you learn, you never forget how to ride a bicycle. They also say an elephant never forgets. Yesterday was my first day back to work after seven weeks off for surgery and recovery. I have been off for extended periods of time in the past, but never for this long at one stretch. And I am a bit surprised to say, in some respects it was like I was only gone for a weekend. For the most part the daily tasks fell into place. I know I was slower in executing the normal chores and I did have to pause and think about some of what I was doing, but ... old elephants never forget how to ride bicycles. Kind of funny. I feel like an adult returning to his childhood home because the whole place seems smaller, more compact than I remember. I am sure after a cold winter of shoveling snow the plant will actually grow in this respect, but the change in perspective is interesting.
The other night I was doing the dog chores by headlamp. The evening was clear and a light frost was falling in the still air, individual faceted crystals shining back at me while the last of the twilight sky changed from salmon, to green, to purple, to the dark indigo of a winter night. We have two dogs, Sadee, the spaniel and Anna, the shepard. They are both dogs, yet in the light from the headlamp their eyes reflect different colors: Sadee'e eyes shine like fiery little pumpkins; Anna's, like cool green summer foxfire. Both of them dogs, but with different eyes.
Karen and I have been talking about how our life has changed; how we have changed. Nothing is ever the same, we know that, but letting go of expectations is difficult. Individually Karen and I mourn the losses we have experienced and dread the arrival of even more. What we are willing to settle for depends on our point of view, our perspective; our memories of the past and our projections for the future. We are both human, we have both been through the same thing. Yet our eyes reflect different colors when the light of reality shines on us.
This is still a long portage and we go about our life together, often relying on habit to see us through, guiding us around obstacles without conscious thought. We hope, we always hope for a good outcome, for never having to deal with cancer ever again, for even just a few parts of the life we used to know, to be there when we reach the end. We want a new and larger life than the one we are living now. We want to forget how to ride this bicycle.
Peace,
Mike
The other night I was doing the dog chores by headlamp. The evening was clear and a light frost was falling in the still air, individual faceted crystals shining back at me while the last of the twilight sky changed from salmon, to green, to purple, to the dark indigo of a winter night. We have two dogs, Sadee, the spaniel and Anna, the shepard. They are both dogs, yet in the light from the headlamp their eyes reflect different colors: Sadee'e eyes shine like fiery little pumpkins; Anna's, like cool green summer foxfire. Both of them dogs, but with different eyes.
Karen and I have been talking about how our life has changed; how we have changed. Nothing is ever the same, we know that, but letting go of expectations is difficult. Individually Karen and I mourn the losses we have experienced and dread the arrival of even more. What we are willing to settle for depends on our point of view, our perspective; our memories of the past and our projections for the future. We are both human, we have both been through the same thing. Yet our eyes reflect different colors when the light of reality shines on us.
This is still a long portage and we go about our life together, often relying on habit to see us through, guiding us around obstacles without conscious thought. We hope, we always hope for a good outcome, for never having to deal with cancer ever again, for even just a few parts of the life we used to know, to be there when we reach the end. We want a new and larger life than the one we are living now. We want to forget how to ride this bicycle.
Peace,
Mike
Monday, December 7, 2009
Familiar
Today felt more familiar. I hesitate to use the word normal because we have a new normal. Never will it be like it was before cancer and in some respects that's ok. We've grown as a individuals and as a couple. We've learned some valuable life tools and we have already been able to help a few others learn how to use those tools.
Today, however, felt familiar and it was nice. There was the sweet kiss good-bye, coffee already cooled to the perfect drinkable temp, and the notebook opened to a page with freshly inked words by Mike. Notes have been scarce lately, we've been able to spend mornings together saying the things to each other that might otherwise find their way to the mottled black and white composition note book. There were phone calls to take from my sister (over an hour) Justine and friend Lisa. Pie was made, bread baked, kitchen cleaned and dishes washed. There was a very quick trip to town to pick up mail and medical supplies for my friend Karen who is in a rehab center in Apple Valley after having broken her pelvis. We are heading down to see her after a Dr's appointment on Wednesday. The rabbits were fed, the dogs played fetch and best of all a whole case of wine showed up via FedEx.
Now the sun is turning the snow from salmon to blue. Mike will be home soon for a special first day back to work dinner. This all seems familiar. A comfort a long time coming.
Peace
Karen
Friday, December 4, 2009
Chemo, Cancer and Eggs Benedict
This morning when I woke there was only one thing on my mind - eggs Benedict. I've been thinking about eggs Benedict for something like three weeks now and this morning, knowing we'd have to go to town to have Mike's chemo pump discontinued, seemed like a good day to go out for breakfast. Over coffee in bed I announced to Mike that I was taking him to breakfast at Country Kitchen and he could have anything he wanted to eat while he watched me eat eggs Benedict.
For the past three weeks I've been thinking about this very breakfast: two perfectly done eggs, sunny side up, deep orange islands with creamy centers surrounded by a snowy sea of whites, reclined on top of a smokey slab of Canadian bacon and a crispy English muffin topped with that sunny yellow sauce of butter, lemon juice and egg yolk, served next to a perfectly brown and crispy nest of hash-brown potatoes.
Before the waitress came back with the object of my desire Mike's pump began to alarm. First a beep-beep-beep then into an alarm which can best be described as the sound a British emergency vehicle makes. We were passing the pump back and forth across the table trying to make it stop when the waitress came back with our food. My eggs Benedict were a work of art. I looked from the plate to my frazzled husband and back again. He was struggling to put new batteries in the machine. I pushed my plate aside and reached for the pump to help him open it. New batteries didn't remedy the situation. Once the machine was back on the beeping resumed. It would only be a matter of moments before the Bobbies showed up again. People around us were looking. Wondering, I suppose, why those people don't know how to work their cell phone. I looked at my plate and back at Mike. "Can we just shut it off so we can eat?" Selfish, I know but....the eggs.
The machine went off and back into it's case with an exasperated sigh. Mike picked up his fork, muttered something about the skillet breakfast being much smaller than he remembered then began to eat in silence. I took up my first bite of the "benny". The eggs were done perfectly, the sauce was very good, the bacon and muffin exactly as I'd hoped except for one thing...it was all luke warm, a bit of a disappointment. I did get my butter to melt into the hash browns and that was good. There would be no leisurely savoring of each bite. No oooooing and ahhhhing at this flavor or that texture. It would be just straight out eating and I did so without hesitation knowing Mike would want to get to the clinic to get the pump problem checked out. There wasn't much left on my plate when JoAnne brought the check. Mike had eaten everything he had but stopped short of spooning jelly out of the two packets left on his plate. The skillet didn't do much for his Incredible Hulk appetite. I knew he'd have to eat again soon. As for me, I had a full belly of wonderful eggs Benedict and I was happy, even if it was a little over seasoned with chemo and cancer.
Peace and eggs for everyone,
Karen
*The tubing had collapsed inside the pump which caused the alarm. The fixed it and sent us away for an hour. We strolled HomeDepot, had the pump discontinued and went home where Mike ate all the leftovers we had.
Thursday, December 3, 2009
35.75 feet per roll
Ok, so this is a bit of a rant. Why is it that the businesses that sell quality toilet paper, stock the crappiest stuff imaginable in their restrooms? Don't you ever wonder that while you're sitting there? More than once, I have wanted to hike up my jeans and take a stroll down to aisle 9 and grab a roll of the good stuff from the shelf and return to finish the job. I mean, you can have your choice of Ultra-Soft, or Extra-Strong, or Super-Aborbent, or Aloe or lotion, or perfumed or not. The choices are there. So why do retailers insist on shitty toilet tissue?
Honest to God, I swear the paper they use is recycled from discarded sheetrock, dug up in landfills and reprocessed to the thinnest degree possible. How else can they get 10,000 feet on one of those giant rolls? I checked the rolls in our bathroom closet and did the math. 35.75 feet per roll. To get the same quality from the rolls in stores you would have to fold their product back on itself a million times. Granted I do not use the toilet paper on my bum anymore, but I do need the protection of some absorbency when I am in a public restroom. For those of you who played the Home Ostomy game, you may understand what I am talking about. By the way, when emptying your bag in a toilet, you face backwards.
Sorry, I jumped the track. I am remined of an old Bill Cosby routine where he talks about going to school for the first time and buying one of those Big Chief notebooks, where pages have big spaces between the lines for young hands learning how to print. He remarked on the quality of the paper as being so crude, it still had the knots from the trees on all the pages. Kind of like some of the cardboard that accompanies most of the stuff that comes from China; it still has straw in it.
Like I said, I just don't get it and probably I am the only one who thinks it is not only wrong, but wierd. Then again, maybe it is just the 'roids talking. Not hemorrhoids, but the steroids I am on during my chemo cycle. Life is interesting on drugs. There is no way I would be up this late doing this blog without the influence of steroids.
So, peace and love and goodnight. Thanks for your indulgence on a subject no one talks about.
Happy Wiping!
Mike
Honest to God, I swear the paper they use is recycled from discarded sheetrock, dug up in landfills and reprocessed to the thinnest degree possible. How else can they get 10,000 feet on one of those giant rolls? I checked the rolls in our bathroom closet and did the math. 35.75 feet per roll. To get the same quality from the rolls in stores you would have to fold their product back on itself a million times. Granted I do not use the toilet paper on my bum anymore, but I do need the protection of some absorbency when I am in a public restroom. For those of you who played the Home Ostomy game, you may understand what I am talking about. By the way, when emptying your bag in a toilet, you face backwards.
Sorry, I jumped the track. I am remined of an old Bill Cosby routine where he talks about going to school for the first time and buying one of those Big Chief notebooks, where pages have big spaces between the lines for young hands learning how to print. He remarked on the quality of the paper as being so crude, it still had the knots from the trees on all the pages. Kind of like some of the cardboard that accompanies most of the stuff that comes from China; it still has straw in it.
Like I said, I just don't get it and probably I am the only one who thinks it is not only wrong, but wierd. Then again, maybe it is just the 'roids talking. Not hemorrhoids, but the steroids I am on during my chemo cycle. Life is interesting on drugs. There is no way I would be up this late doing this blog without the influence of steroids.
So, peace and love and goodnight. Thanks for your indulgence on a subject no one talks about.
Happy Wiping!
Mike
Wednesday, December 2, 2009
Going there
"I used to wonder why the sea was blue at a distance and green close up and colorless for that matter in your hands. A lot of life is like that. A lot of life is just a matter of learning to like blue."
Miriam Pollard
The Listening God
So sometimes life looks a little prettier at a distance and is fairly concrete. Sometimes that same life up close looks a little puzzling. My life seems a little puzzling these days. My husband who I used to know like the back of my hand is now, well, um, well now he's on steriods. Not like all the time steriods. Just every two weeks steriods. Kinda like, um, roller coaster steroids. He gets this mega-dose prior to getting all the chemo meds (leucovorin, oxoliplatin, 5FU). They say it helps him not get so, what was the word Erin used, oh yeah, inflamed. Right!
Ok, so Erin said the Dexamethasone will make him irritable and hop him up and she said it would last for a few days and then he would come crashing down. What she didn't say was how hungry Mike would get in addition to all of this. What I mean by hungry is he flips out if food isn't right there. It's not a look in the fridge decide what you want to eat hungry it's specific and it is a HUGE gotta have it now hunger. Last week on the way to Duluth we had to pull over to find food, several times. When he is hungry his empty light goes on and you have less than an ounce of gas to find fuel.
And he does get irritable, but that I get. I found myself a few nights ago apologizing to him for all the years of PMS he's had to endure because now I get it. He is also, for a few days anyhow, exhaustingly full of energy. Kinda like when I come home from work all pumped and talky and running at the mouth with stories and ideas and he's worked all day and is tired. Again, sorry baby. I get it now.
Then it all settles down just in time for.....it....to....START ALL OVER AGAIN. Gimme a freaking break!
Today we started the cycle all over again. His taste buds are funky and everything tastes all wrong. Cold drinks bother him. Touching cold bothers him. The cold outside bothers him. And I am expecting his PMS any time now.(God forbid we both go on the rag at the same time). I also expect he will start to crash on Wednesday when we will be driving to Minneapolis and back for an appointment with Dr Madoff. I'll have to pack a cooler of food and what else? Pamprin?
Mike has six more of these treatments to look forward to before it's all done. Now, having said that brings me to the real point of this blog and those of you who like the "K-Rant" are in for a treat. K? Here we go.
Let me repeat that last point: Six more treatments left = we are not done yet. Why do I say that? Because someone said, and I quote, "Please put this cancer thing to bed. You won. Take your medicine, and live the life you have left. " Uh Huh.
My first response to this was: WTF? I mean really what was this person thinking? Does he/she think we are just hanging out at Whiskey Jack Flats with a party of cancer cells drinking booze and crying in our popcorn? Cuz boy, I'd like to put this thing to bed. I'm tired of it. I'm sick and tired of watching what surgery and chemo does to Mike. It's no trip to Vegas to be me right now and it certainly is no real trip to be Forbes either. We are trying to live our lives and do the things we like to do. Believe me if I could have my/our pre-cancer life back I'd take it. But we don't get a freaking do over now do we? We got what we got and we do the best we can with that. We aren't sitting in our chairs staring out the window with drool on our faces waiting for a fairy god-mother to show up and shake her ju-ju wand over us and make it all sunshine and sparkles. Take a walk in these shoes and see how it all looks. Just walk on over here and see if you can make every day a Disney day.
Ok so that was my first response. Mostly happened in my head. Didn't get up in this persons face and say it so I'm ok. Didn't trash out anybody's feeling. Thank age and a lot of Buddhist and Toltec teachings for that.
But what did happen was I put myself in that person's space and thought (and we thank Thich Nhat Hanh here)...hmmmm wrong perception and wrong understanding.
Here that? Wrong perception based on wrong understanding. So, whose fault is that? In this case it is ours. What ensued after this revelation was a long conversation between Mike and I in which we realized we have not, as of late, been very good at bringing you our reader or those of you in our lives to clear understanding of what this whole cancer thing means in our lives. So, I'm going to be a little more present and a little more honest and as our friend "Lucious" (name changed to protect the innocent) says a little more raw. Raw as in with no additives or preservatives.
You might want to gird your loins and stock your fridge because we're going there.
Peace
Karen
Sunday, November 29, 2009
DIY- Home Ostomy
Yep, that's right. I am going to explain how you too, can have your own ostomy experience. Maybe you're wondering where in the hell this came from? Has Forbes lost his freakin' mind? Well, kinda, I guess. Some of the impetus for this came from conversation Karen and I had last night. Lots of people ask how I am doing with my ostomy but as Karen pointed out, I have never really addressed the issue; I have never really talked about what it is like living with an ostomy. And some of it is prompted by a line from yesterday's journal entry: "Will I ever get used to squeezing my warm shit out of bag stuck to my belly?"
Would you?
So, when I wasn't sleeping last night I thought of how 'normal' people like yourselves, can get a feel for dealing with ostomy, day in and day out. Chances are you probably have most of what you need for your own ostomy at home. I would recommend a trip to your local grocery where you should stock up on lots and lots and lots of those little pudding packs. You will probably want chocolate and fudge varieties and maybe butterscotch, if you want something that looks like your poo when you have the shits. You may also want to get a bit of double-stick tape.
First, you will have to make your ostomy bag. For some reason these are often referred to as 'an appliance' but that's just med-speak. Start with a quart size Ziplock type baggie. Lay it flat and trace a circle about 2 to 3 inches in diameter down in one corner of the bag. You may want to use a glass as a template. Get this circle close to both the horizontal and vertical edges. Then, using a quarter, trace a 1 inch circle in the middle of the larger circle and cut out this smaller circle. This will be the opening for your ostomy.
Now take off all your clothes and make a mark on your belly about 2 inches to the right of, and 2 inches below your navel. This is the site of your ostomy. Take a look at yourself in the mirror. It will be the last time you see yourself with a normal body. Now, take the double-stick tape and apply it within the large circle on your ostomy bag. Be sure you do not cover up the 1 inch opening. When your are done with the double-stick tape center the small opening over the mark you made on your belly and stick the bag to your skin. Did I forget to mention that you may need to shave your belly first? Sorry.
You want to create a pudding-tight seal so you will have to add some tape around the baggy.You may need some help here. If you used a glass for a template I think I would place the glass inside the baggy, over the larger circle, and apply tape to the baggy around the glass. When you think you have it good and snug, remove the glass from the baggy. In real life, an ostomy bag has a thick vinyl flange with a strong adhesive that sticks to your skin. The opening for the ostomy is cut with a scissors and a paste, similar to caulking, is applied to make sure the bag does not leak feces or gas.
Look in the mirror again. Do you feel a bit ridiculous with a baggy stuck to your side? Do you think you are sexy and attractive? Wait till the damn thing is full.
Ok, now here is the fun part; filling your bag with poo. Open the ziplock edge and put about 1 1/2 cups of pudding in the baggy, without getting any in the ziplock seal, and shut the bag. Now get dressed. Underwear, t-shirt, shirt, pants. With any luck at all, you will find your ostomy is right at your waistline. You may find it a challenge to make your pants fit. Now, bend over and put on your socks and shoes. Anything in the way? Hmmm. This part must be like the early stages of pregnancy
Go about your normal daily activities with your full ostomy. You may find the tape pulling and itching. After a couple hours it can be time to go to the bathroom. Now, without removing any of your clothes, empty your ostomy into the toilet. Do not get any poo on you, your clothes or the floor. Clean up the ziplock seal nice and clean so it will perform correctly and put yourself back together again.
After about an hour put some more pudding in your bag. You don't have to fill up all at once. The goal here is to fill and empty your bag 4 to 6 times per day. You may find it to be real challenge to keep everything clean and together. You may find the bag hanging down to be awkward. They do make ostomy support belts that allow an ostomate to wear their bag sideways. I have one and it makes all the difference in comfort. You can try supporting your bag with your belt or you can simulate an ostomy belt with several wraps of Ace bandage or maybe by using one of those back support belts. Just leave it fairly loose because you still have to fit your full bag under the belt. If you start wearing a faux ostomy support belt remember, you have to wear it 24/7. You can take it off to take a shower, but that's it.
When you want to share an intimate moment with your loved one be sure to empty your bag first and keep the support belt on as well. Nothing says "I want you" more than making love while wearing an ostomy belt. Keep at this for a few days or weeks. For fun variations try going out of town. Fill your bag, put on some nice clothes and drive for three hours. Then find a public restroom and empty your bag without making a mess of yourself or your clothes. Hopefully your bag didn't leak along the way and if it did, hopefully you planned ahead and brought a change of underwear and jeans and enough supplies to replace your 'appliance'.
For you outdoor types, here is something fun. Go for a long walk in the woods. This time of year is perfect. Cold weather means more clothes. After an hour or so, about the time you have to pee anyway, stop and try to empty your bag. Remember, try to keep all your clothes on and out of the way. You may find that squatting just doesn't work anymore. I really miss the days where I could squat in the snow and I never minded using snow instead of toilet paper.
I really hope some of you try this at home. What can it hurt? You will be dealing with pudding after all, and not the real poo. You may find that in the middle of the night your nose will detect the sweet odor of leaking pudding and wake you before you mess the whole bed. If you make it that far, you have arrived. O, I left out the part about using disposable gloves. I use them all the time to protect myself when cleaning the opening to my bag. I figure it's bad enough to have to mess with my own shit. I don't want to wear it or smell it on myself.
Hope you enjoyed this little exercise and got a feel for what I, and lots of other people, deal with everyday. As the late Jim Reeves used to sing "Welcome to my world. Won't you come on in?... Miracles I guess, still happen now and then."
Peace and love from the DYI Ostomy World Headquarters,
Mike
Would you?
So, when I wasn't sleeping last night I thought of how 'normal' people like yourselves, can get a feel for dealing with ostomy, day in and day out. Chances are you probably have most of what you need for your own ostomy at home. I would recommend a trip to your local grocery where you should stock up on lots and lots and lots of those little pudding packs. You will probably want chocolate and fudge varieties and maybe butterscotch, if you want something that looks like your poo when you have the shits. You may also want to get a bit of double-stick tape.
First, you will have to make your ostomy bag. For some reason these are often referred to as 'an appliance' but that's just med-speak. Start with a quart size Ziplock type baggie. Lay it flat and trace a circle about 2 to 3 inches in diameter down in one corner of the bag. You may want to use a glass as a template. Get this circle close to both the horizontal and vertical edges. Then, using a quarter, trace a 1 inch circle in the middle of the larger circle and cut out this smaller circle. This will be the opening for your ostomy.
Now take off all your clothes and make a mark on your belly about 2 inches to the right of, and 2 inches below your navel. This is the site of your ostomy. Take a look at yourself in the mirror. It will be the last time you see yourself with a normal body. Now, take the double-stick tape and apply it within the large circle on your ostomy bag. Be sure you do not cover up the 1 inch opening. When your are done with the double-stick tape center the small opening over the mark you made on your belly and stick the bag to your skin. Did I forget to mention that you may need to shave your belly first? Sorry.
You want to create a pudding-tight seal so you will have to add some tape around the baggy.You may need some help here. If you used a glass for a template I think I would place the glass inside the baggy, over the larger circle, and apply tape to the baggy around the glass. When you think you have it good and snug, remove the glass from the baggy. In real life, an ostomy bag has a thick vinyl flange with a strong adhesive that sticks to your skin. The opening for the ostomy is cut with a scissors and a paste, similar to caulking, is applied to make sure the bag does not leak feces or gas.
Look in the mirror again. Do you feel a bit ridiculous with a baggy stuck to your side? Do you think you are sexy and attractive? Wait till the damn thing is full.
Ok, now here is the fun part; filling your bag with poo. Open the ziplock edge and put about 1 1/2 cups of pudding in the baggy, without getting any in the ziplock seal, and shut the bag. Now get dressed. Underwear, t-shirt, shirt, pants. With any luck at all, you will find your ostomy is right at your waistline. You may find it a challenge to make your pants fit. Now, bend over and put on your socks and shoes. Anything in the way? Hmmm. This part must be like the early stages of pregnancy
Go about your normal daily activities with your full ostomy. You may find the tape pulling and itching. After a couple hours it can be time to go to the bathroom. Now, without removing any of your clothes, empty your ostomy into the toilet. Do not get any poo on you, your clothes or the floor. Clean up the ziplock seal nice and clean so it will perform correctly and put yourself back together again.
After about an hour put some more pudding in your bag. You don't have to fill up all at once. The goal here is to fill and empty your bag 4 to 6 times per day. You may find it to be real challenge to keep everything clean and together. You may find the bag hanging down to be awkward. They do make ostomy support belts that allow an ostomate to wear their bag sideways. I have one and it makes all the difference in comfort. You can try supporting your bag with your belt or you can simulate an ostomy belt with several wraps of Ace bandage or maybe by using one of those back support belts. Just leave it fairly loose because you still have to fit your full bag under the belt. If you start wearing a faux ostomy support belt remember, you have to wear it 24/7. You can take it off to take a shower, but that's it.
When you want to share an intimate moment with your loved one be sure to empty your bag first and keep the support belt on as well. Nothing says "I want you" more than making love while wearing an ostomy belt. Keep at this for a few days or weeks. For fun variations try going out of town. Fill your bag, put on some nice clothes and drive for three hours. Then find a public restroom and empty your bag without making a mess of yourself or your clothes. Hopefully your bag didn't leak along the way and if it did, hopefully you planned ahead and brought a change of underwear and jeans and enough supplies to replace your 'appliance'.
For you outdoor types, here is something fun. Go for a long walk in the woods. This time of year is perfect. Cold weather means more clothes. After an hour or so, about the time you have to pee anyway, stop and try to empty your bag. Remember, try to keep all your clothes on and out of the way. You may find that squatting just doesn't work anymore. I really miss the days where I could squat in the snow and I never minded using snow instead of toilet paper.
I really hope some of you try this at home. What can it hurt? You will be dealing with pudding after all, and not the real poo. You may find that in the middle of the night your nose will detect the sweet odor of leaking pudding and wake you before you mess the whole bed. If you make it that far, you have arrived. O, I left out the part about using disposable gloves. I use them all the time to protect myself when cleaning the opening to my bag. I figure it's bad enough to have to mess with my own shit. I don't want to wear it or smell it on myself.
Hope you enjoyed this little exercise and got a feel for what I, and lots of other people, deal with everyday. As the late Jim Reeves used to sing "Welcome to my world. Won't you come on in?... Miracles I guess, still happen now and then."
Peace and love from the DYI Ostomy World Headquarters,
Mike
Tuesday, November 24, 2009
How do you spell 'exhausted'?
I cannot remember the last time I was this tired. Maybe it was when I was in the hospital. Sometimes I find it difficult to believe I have been 'out' for a month. Today is a repeat of yesterday- cloudy, foggy, damp, dark; too dark for me right now.
We made a trip to Duluth yesterday and visited with the genetic counselor. It should have been a fun trip; most of our road trips are, but I hadn't slept well and I had things on my mind and I forgot to bring the sunshine I needed to sustain me. I felt bad for Karen, who had been looking forward to the trip, as I had been, but I just wasn't very good company. I am sorry, baby.
We drove in rain most of the way. I kept looking into the wet empty woods wishing I could just walk and walk and walk. Somehow that seemed like the best thing I could do for myself and yet, it was the least likely to actually occur. Dianne, the genetic counselor, asked me questions about my family history and I tried, I really did try to answer them, but Dad's side of the family is just a big void in space and time. To this day, I never really know what happened. I just know that Mom never talked about my dad or his relatives. We had our short interview, discussed some of the questions and then they drew a vial of blood that will be sent to Mayo for analysis. In three weeks or so, we may know whether the genetic factor I have is limited to me or is inherited throughout our family. If the syndrome is inherited, then at least the specific gene will be identified and then my children and siblings can have that looked at without having to do the whole sequence all over.
So now we wait. The girls are inside, keeping me company, dozing on the floor. I think today is a major nap day. Right now, I have all I can do to stay awake. When I am more coherent, I will try to post something that is a bit more upbeat.
Later,
Mike
We made a trip to Duluth yesterday and visited with the genetic counselor. It should have been a fun trip; most of our road trips are, but I hadn't slept well and I had things on my mind and I forgot to bring the sunshine I needed to sustain me. I felt bad for Karen, who had been looking forward to the trip, as I had been, but I just wasn't very good company. I am sorry, baby.
We drove in rain most of the way. I kept looking into the wet empty woods wishing I could just walk and walk and walk. Somehow that seemed like the best thing I could do for myself and yet, it was the least likely to actually occur. Dianne, the genetic counselor, asked me questions about my family history and I tried, I really did try to answer them, but Dad's side of the family is just a big void in space and time. To this day, I never really know what happened. I just know that Mom never talked about my dad or his relatives. We had our short interview, discussed some of the questions and then they drew a vial of blood that will be sent to Mayo for analysis. In three weeks or so, we may know whether the genetic factor I have is limited to me or is inherited throughout our family. If the syndrome is inherited, then at least the specific gene will be identified and then my children and siblings can have that looked at without having to do the whole sequence all over.
So now we wait. The girls are inside, keeping me company, dozing on the floor. I think today is a major nap day. Right now, I have all I can do to stay awake. When I am more coherent, I will try to post something that is a bit more upbeat.
Later,
Mike
Sunday, November 22, 2009
Almost Feels like the Tipi
Today is quiet. The morning started out that way; light fog, no wind, not even much for frost. This is so unlike a typical late November that I can't help but feel we are being given a gift. I welcome the gift and I am thankful.
We have not done much today and that has been good. Karen is sewing, the joy of complete concentration and happiness fills her face. I walked for three miles this morning and put up a rude platform bird feeder. Then I froze some Italian sausage we had made from the doe I shot last week. The radio is off and when the breeze can muster enough energy the wind chimes sing and hum. Otherwise the space around us is one of stillness and peace and feels like the old days under the canvas. All we are missing is stew cooking on the woodstove.
Tomorrow we go to Duluth. I contacted a genetic counselor last week because I want to follow up on the implications that come with my Lynch's Syndrome. I don't know much about the syndrome and even less about what we will find. I am expecting blood work that will be used to determine if my mismatched genes are limited to my tissue, (my tumor) and hence, not inheritable; or if the whole thing is systemic, meaning it can be inherited by Justine and Meredith and may already be in my siblings. I dragged my feet on this for awhile, partly because I was just trying to recover from my own surgery and partly because it was just another medical hoop to jump through. I am glad I have started on the process and hope most of it will be covered by insurance and be done before I start my new deductible next year.
Chemo went alright this week. I am tired today and Erin said that would happen after the steroids wear off. But overall I am doing well.
Time is so slow today. The sky is light with a haze of cloud that makes the afternoon endless. We are living in a dream and I relish this peace. It is good to feel the tipi again.
Peace and love to all of you.
Mike
We have not done much today and that has been good. Karen is sewing, the joy of complete concentration and happiness fills her face. I walked for three miles this morning and put up a rude platform bird feeder. Then I froze some Italian sausage we had made from the doe I shot last week. The radio is off and when the breeze can muster enough energy the wind chimes sing and hum. Otherwise the space around us is one of stillness and peace and feels like the old days under the canvas. All we are missing is stew cooking on the woodstove.
Tomorrow we go to Duluth. I contacted a genetic counselor last week because I want to follow up on the implications that come with my Lynch's Syndrome. I don't know much about the syndrome and even less about what we will find. I am expecting blood work that will be used to determine if my mismatched genes are limited to my tissue, (my tumor) and hence, not inheritable; or if the whole thing is systemic, meaning it can be inherited by Justine and Meredith and may already be in my siblings. I dragged my feet on this for awhile, partly because I was just trying to recover from my own surgery and partly because it was just another medical hoop to jump through. I am glad I have started on the process and hope most of it will be covered by insurance and be done before I start my new deductible next year.
Chemo went alright this week. I am tired today and Erin said that would happen after the steroids wear off. But overall I am doing well.
Time is so slow today. The sky is light with a haze of cloud that makes the afternoon endless. We are living in a dream and I relish this peace. It is good to feel the tipi again.
Peace and love to all of you.
Mike
Wednesday, November 18, 2009
Deja Vu All Over Again
It begins, again. Karen and I barely sat down in the lobby before Erin grabbed us for the first of my last rounds of chemo. Shoes come off and I step on a scale and she records my weight. We follow her to one of the treatment rooms and I take my place in a recliner where I will sit for the next four hours. Normally the process won't take this long but there is protocol to follow. We go through the meds I will be receiving and the wonderful side effects. My port is accessed and flushed and a dextrose drip is started to go with one of the drugs that will help combat nausea. Orders for my chemo are sent out to the doctor and we wait. The actual chemo drugs are administered over a two hour period, followed by a 10 minute push with 5FU. And then we are done. For this time, for the next two weeks.
Really, when you think of it, the compounds, the drugs and medicines we receive are pretty amazing. The medical community can take your pain away in few moments and yet, sometimes anti-biotics can take a long time to have an effect, and occasionally, they don't work at all. A half hour ago I just finished throwing the ball for the girls; (Anna and Sadee) and I was feeding the rabbits when I noticed a tingling in my left arm. The sensation was similar to when your arm falls asleep in a big way; the kind of pain that gets your attention when the blood flows back into your arm. And then I felt the same thing in my right arm.
WOW!! I knew I would probably experience nerve tingling because that is one of the major side effects, but I did not expect to experience it this soon. But... this afternoon when I touched a cup of cold pop my fingers reacted with kind of mild burning. And when I was out for my walk the cool evening air felt sharper on my cheeks than would be justified by a temperature in the mid-30's. I ran my gloved hands below my eyes because I thought I could feel tears on my face. An increased tendency for tearing is another thing I will have to live with this winter. When winter really comes I was told I will have to cover my mouth so I don't take in the cold air because it can make me feel as though I cannot breathe.
So, here we are at a sort of beginning; a beginning of what I hope will be the end of this particular part of my journey in life. My pump buzzes every few minutes, giving me my dose of chemo. For the next few days I will be juggling the pump, and my ostomy, and then on Friday, the pump is removed. But the chemo goes on and on. This is our life now, but it will not be our life forever. I am thankful for the staff that help us, for the friends and family that give us their love and support. And I am thankful for Karen. I could not do this without her.
I heard winter will arrive next week. Get out and enjoy the weather while you can.
Peace and love to all of you,
Mike
Really, when you think of it, the compounds, the drugs and medicines we receive are pretty amazing. The medical community can take your pain away in few moments and yet, sometimes anti-biotics can take a long time to have an effect, and occasionally, they don't work at all. A half hour ago I just finished throwing the ball for the girls; (Anna and Sadee) and I was feeding the rabbits when I noticed a tingling in my left arm. The sensation was similar to when your arm falls asleep in a big way; the kind of pain that gets your attention when the blood flows back into your arm. And then I felt the same thing in my right arm.
WOW!! I knew I would probably experience nerve tingling because that is one of the major side effects, but I did not expect to experience it this soon. But... this afternoon when I touched a cup of cold pop my fingers reacted with kind of mild burning. And when I was out for my walk the cool evening air felt sharper on my cheeks than would be justified by a temperature in the mid-30's. I ran my gloved hands below my eyes because I thought I could feel tears on my face. An increased tendency for tearing is another thing I will have to live with this winter. When winter really comes I was told I will have to cover my mouth so I don't take in the cold air because it can make me feel as though I cannot breathe.
So, here we are at a sort of beginning; a beginning of what I hope will be the end of this particular part of my journey in life. My pump buzzes every few minutes, giving me my dose of chemo. For the next few days I will be juggling the pump, and my ostomy, and then on Friday, the pump is removed. But the chemo goes on and on. This is our life now, but it will not be our life forever. I am thankful for the staff that help us, for the friends and family that give us their love and support. And I am thankful for Karen. I could not do this without her.
I heard winter will arrive next week. Get out and enjoy the weather while you can.
Peace and love to all of you,
Mike
Tuesday, November 17, 2009
A Bucket That Doesn't Leak...
Yes, I do like peace. For many, many years that is all I wanted. Peace was the one thing I always asked for when I stepped out and looked up at the night sky before turning in for the day with the hope that tomorrow would be better. Peace...
I think it fair to say that my life is more peaceful now than it was, even a few years ago. I have worked hard; Karen and I have worked hard, to bring more peace into our lives. Without that basic foundation in our lives the past six months would have been much worse. It is a case where the harder we work, the luckier we get.
Today is sunny, breezy and for November, unseasonably mild. More of the same is forecast for the rest of the week and I cannot say I am disappointed. November is typically the cloudiest month of the entire year and I do need sunny days. I know there are some people waiting for snow. Sue and John would like to have snow because then people would want to buy skiis, and many hunting brethren would like tracking snow for the rest of the deer season, but I will take days like this as the gifts they are.
Deer season has been a success. I was lucky enough to receive a nice doe; very fat and evidently fond of corn though Jeff and I do not know where she found corn up in the woods around Hines. Maybe someone has a small field of corn, or maybe someone is baiting deer, which is illegal. Either way, she came to me and now she has joined us for the winter. We are thankful. I still have a tag for a buck and will probably hunt for at least part of Saturday with the idea that any further luck that comes my way will have to go to someone else's freezer. When I finish this blog I will take the remains of the doe back into the forest, to a nice place with a good view, arrange her as respectfully as possible, say a few final words of thanks and leave her to rejoin the earth. I cannot abide the thought of throwing the remains of deer I kill into a dumpster or garbage bag. I cannot dishonor the spirit of the deer in that way.
The other night Karen and I were taking a shower and running out of hot water long before Karen was ready to be done and she was mightily pissed off. So yesterday I went to Fleet and bought two new elements for the water heater and we played plumber last night. I always enter these type of projects expecting the worst- something is going to break, or leak, or the parts will be wrong, etc., etc. Turns out the most difficult part was getting the water to drain down fast enough. But we did get the project completed. No one got yelled at, nothing got thrown, we don't have any leaks and now we have lots of hot water again. It was only after we were done that I wondered why we didn't call my plumber nephew down in Arizona for advice. I am still convinced the most reliable plumbing is a five gallon bucket that doesn't leak. I can say that, having lived without running water for two years. For me, simpler is often better.
I took advantage of the hot water this morning and enjoyed a long hot shower, completely naked. That is, without my ostomy bag on my belly and that was wonderful. My little rosebud behaved, no pooping in the shower and the hot water felt so good on skin that is often completely covered for days at a time. We are, I am, still learning more about the day-to-day management of my ostomy. We went on line yesterday to the United Ostomy Association of America website and perused the pages for advice on a couple of concerns we have. Theses people, these ostomates, represent a huge wealth of knowledge and experience and their contributions are invaluable.
Tomorrow I start my next, and I hope, my last round of chemo. We always knew this was coming but many people who have followed us in this journey, are surprised to hear I have to go through chemo again. I thought we had always mentioned this last bit of chemo, so we are surprised that this is news to so many people. I have some anxiety about this round of treatment. I will have a two hour infusion and then go home with a pump attached to the port in my chest. I will only have to wear the pump for two days at a time. I can only imagine the fun I will have managing the pump and ostomy at the same time. This cycle of infusion-chemo pump, will take place eight times over the next four months, meaning I have the treatments every two weeks. The break between treatments is designed to let my body recover before the next round. That is the part that makes me nervous.
But hey, how bad can it be? I mean, I should be ok with potential side-effects such as an increased sensitivity to cold, especially in my hands and feet. And temporary numbness in my fingers. That should be great, too. Especially if the numbness makes managing my ostomy or use of my hands, difficult. What the hell, right? Winter is coming after all, complete with cold and clouds and shorter days and longer nights. But we do have hot water.
And we do have peace and that is worth any price.
Peace and love to all of you,
Enjoy these days and the love of friends and family,
Mike
I think it fair to say that my life is more peaceful now than it was, even a few years ago. I have worked hard; Karen and I have worked hard, to bring more peace into our lives. Without that basic foundation in our lives the past six months would have been much worse. It is a case where the harder we work, the luckier we get.
Today is sunny, breezy and for November, unseasonably mild. More of the same is forecast for the rest of the week and I cannot say I am disappointed. November is typically the cloudiest month of the entire year and I do need sunny days. I know there are some people waiting for snow. Sue and John would like to have snow because then people would want to buy skiis, and many hunting brethren would like tracking snow for the rest of the deer season, but I will take days like this as the gifts they are.
Deer season has been a success. I was lucky enough to receive a nice doe; very fat and evidently fond of corn though Jeff and I do not know where she found corn up in the woods around Hines. Maybe someone has a small field of corn, or maybe someone is baiting deer, which is illegal. Either way, she came to me and now she has joined us for the winter. We are thankful. I still have a tag for a buck and will probably hunt for at least part of Saturday with the idea that any further luck that comes my way will have to go to someone else's freezer. When I finish this blog I will take the remains of the doe back into the forest, to a nice place with a good view, arrange her as respectfully as possible, say a few final words of thanks and leave her to rejoin the earth. I cannot abide the thought of throwing the remains of deer I kill into a dumpster or garbage bag. I cannot dishonor the spirit of the deer in that way.
The other night Karen and I were taking a shower and running out of hot water long before Karen was ready to be done and she was mightily pissed off. So yesterday I went to Fleet and bought two new elements for the water heater and we played plumber last night. I always enter these type of projects expecting the worst- something is going to break, or leak, or the parts will be wrong, etc., etc. Turns out the most difficult part was getting the water to drain down fast enough. But we did get the project completed. No one got yelled at, nothing got thrown, we don't have any leaks and now we have lots of hot water again. It was only after we were done that I wondered why we didn't call my plumber nephew down in Arizona for advice. I am still convinced the most reliable plumbing is a five gallon bucket that doesn't leak. I can say that, having lived without running water for two years. For me, simpler is often better.
I took advantage of the hot water this morning and enjoyed a long hot shower, completely naked. That is, without my ostomy bag on my belly and that was wonderful. My little rosebud behaved, no pooping in the shower and the hot water felt so good on skin that is often completely covered for days at a time. We are, I am, still learning more about the day-to-day management of my ostomy. We went on line yesterday to the United Ostomy Association of America website and perused the pages for advice on a couple of concerns we have. Theses people, these ostomates, represent a huge wealth of knowledge and experience and their contributions are invaluable.
Tomorrow I start my next, and I hope, my last round of chemo. We always knew this was coming but many people who have followed us in this journey, are surprised to hear I have to go through chemo again. I thought we had always mentioned this last bit of chemo, so we are surprised that this is news to so many people. I have some anxiety about this round of treatment. I will have a two hour infusion and then go home with a pump attached to the port in my chest. I will only have to wear the pump for two days at a time. I can only imagine the fun I will have managing the pump and ostomy at the same time. This cycle of infusion-chemo pump, will take place eight times over the next four months, meaning I have the treatments every two weeks. The break between treatments is designed to let my body recover before the next round. That is the part that makes me nervous.
But hey, how bad can it be? I mean, I should be ok with potential side-effects such as an increased sensitivity to cold, especially in my hands and feet. And temporary numbness in my fingers. That should be great, too. Especially if the numbness makes managing my ostomy or use of my hands, difficult. What the hell, right? Winter is coming after all, complete with cold and clouds and shorter days and longer nights. But we do have hot water.
And we do have peace and that is worth any price.
Peace and love to all of you,
Enjoy these days and the love of friends and family,
Mike
Monday, November 16, 2009
Friday, November 13, 2009
News Flash from the Forest
Mike shot a nice doe....all fat and corn fed. Details to come later!
Peace,
Karen
Peace,
Karen
Monday, November 9, 2009
Another postcard from Recovery Camp
It has been awhile since I last wrote but I have been a busy boy. I have a better understanding of people who are retired and too busy to get anything done. That is what life is like for me these days. So many things to do and so little time to do them, even though I am not working.
I paid a visit to work last week to check in on the boyz. They were happy to see me because I brought donuts. Nice to be appreciated. And I spent part of another day in town getting groceries and a new chimney cap. My whole grocery shopping experience took place in the dark because that section of town lost electricity about the time I was making my way down the produce aisle.
Friday we ventured to Roger Maris Cancer Center to visit with Dr. Shahidi, my ocologist. My new chemo regimen may begin on the 18th of this month. I will be receiving an infusion which is a two hour procedure and then get hooked up to my friend, the portable chemo pump. I only have to wear the pump for two days at a time. My chemo will be every two weeks, not every week as I had thought earlier. I am a bit worried about the infusion. Something in the way Dr. Shahidi explained the process leads me to believe this infusion is going to kick my butt in all sorts of evil ways. What is kind of ironic are the side effects I will experience. This past summer I had an increased sensitivity to sunlight and heat. Now I will have an increased sensitivity to cold. This should be fun with winter coming on. Plus I may experience tingling and numbness in my fingers and toes. Hopefully that won't get bad enough to affect my dexterity and the ability to use my hands and fingers. These side-effects are supposed to leave when the treatment is over.
Friday was a long day for me. Lots of sitting and that can still be difficult for my rear end. But Karen and I had a great time. She was very patient with me and shopped extra slow while I tried to nap in the van. I was beat when we got home.
I made a late-morning appearance at Brother Wiebe's deer camp on Saturday. I did see 4 deer but had no shots. I even got up way too early yesterday and went again. No deer for me but Jeff got one. When the rain came in the afternoon I took shelter in their sugar shack. Cindi had us up for dinner along with Mark and Wendy, and Tommy. Mark and Jeff sure like my Tullamore Dew. I took this morning off and slept in and I am glad I did. This morning is just beautiful and would have been so even in the deer woods but I feel better for staying home.
Last night in the shower, with the benefit of lots of hot water I discovered why I have been uncomfortable down in my groin. My left testicle is about 50% larger than my right testicle. I presume this swelling is an aftereffect of the surgery and related to the pain I have had in my abdomen. I thought that pain was related to the drain that had been in my belly. The whole thing is vaguely reminescent of a vasectomy and I hope that it can be resolved easily. I put in a call down to Fairview to let them know what's up so we will see what they say. My man junk still works but the moment of ectasy is somewhat diminshed by the twinges of pain that are not part of your normal intimate experience.
I know Karen blogged about beauty and it is true, my self-concept of beauty is marred at present. I expect that will diminish over time. What I have read from other ostomates indicates that before long you come to accept yourself and don't even think twice about your ostomy and the visual aspects of a bag on your belly.
Karen has been very supportive and keeps telling me I am beautiful. She also searched on-line and found a support belt for me. The belt allows me to wear my bag horiznontally. This means I can wear most of my pants just like before. I sometimes wear a belt, depending on how my belly feels but a belt was a real problem when the bag hung vertically. I have taken to wearing suspenders because they help hold my pants up if I don't want the tightness of a belt. Now that part of life is approaching 'normal' except that I have this bulge on the right side of my belly and the bulge grows until I empty it.
The bulge is my ostomy bag and serves the same purpose as your colon, rectum and anus for those of you with all your parts intact. I have to empty the bag several times a day and it is another aspect of my life that will take some getting used to. It is a real trick in the woods but that can be a different story for a different day. I have no regrets about my surgery though I sometimes find myself wishing my life and body could just be normal like everyone else. Or what passes for normal these days. I am not naive enough to believe everyone is normal. I know some of you better than that.
Today will be a walking day and a day to get caught up on some things that have been put aside in the past few days. John and Sue will be coming over for supper tonight and tomorrow we have Homz. And I will keep walking and taking myself out into the woods on nice days when I feel strong. I am trying to keep up on correspondence and emails but I am notoriously inconsistent when it comes to making myself check the computer. The visions I had of working on small projects while at home is not even close to my reality so far. Like I said, I have a better understanding of what retired people mean when they tell you they don't know how they got anything done before they quit work.
So, that's it from camp. The counselor is beautiful and I have a crush on her. She likes it when I bring her coffee in the morning. Thanks to all of you who have supported us. We have no doubts about the positive effects of all the prayers and good wishes you have sent our way. Take care of yourselves and your loved ones and know that Karen and I send our best to all of you, wherever you are.
Peace and love,
Mike
I paid a visit to work last week to check in on the boyz. They were happy to see me because I brought donuts. Nice to be appreciated. And I spent part of another day in town getting groceries and a new chimney cap. My whole grocery shopping experience took place in the dark because that section of town lost electricity about the time I was making my way down the produce aisle.
Friday we ventured to Roger Maris Cancer Center to visit with Dr. Shahidi, my ocologist. My new chemo regimen may begin on the 18th of this month. I will be receiving an infusion which is a two hour procedure and then get hooked up to my friend, the portable chemo pump. I only have to wear the pump for two days at a time. My chemo will be every two weeks, not every week as I had thought earlier. I am a bit worried about the infusion. Something in the way Dr. Shahidi explained the process leads me to believe this infusion is going to kick my butt in all sorts of evil ways. What is kind of ironic are the side effects I will experience. This past summer I had an increased sensitivity to sunlight and heat. Now I will have an increased sensitivity to cold. This should be fun with winter coming on. Plus I may experience tingling and numbness in my fingers and toes. Hopefully that won't get bad enough to affect my dexterity and the ability to use my hands and fingers. These side-effects are supposed to leave when the treatment is over.
Friday was a long day for me. Lots of sitting and that can still be difficult for my rear end. But Karen and I had a great time. She was very patient with me and shopped extra slow while I tried to nap in the van. I was beat when we got home.
I made a late-morning appearance at Brother Wiebe's deer camp on Saturday. I did see 4 deer but had no shots. I even got up way too early yesterday and went again. No deer for me but Jeff got one. When the rain came in the afternoon I took shelter in their sugar shack. Cindi had us up for dinner along with Mark and Wendy, and Tommy. Mark and Jeff sure like my Tullamore Dew. I took this morning off and slept in and I am glad I did. This morning is just beautiful and would have been so even in the deer woods but I feel better for staying home.
Last night in the shower, with the benefit of lots of hot water I discovered why I have been uncomfortable down in my groin. My left testicle is about 50% larger than my right testicle. I presume this swelling is an aftereffect of the surgery and related to the pain I have had in my abdomen. I thought that pain was related to the drain that had been in my belly. The whole thing is vaguely reminescent of a vasectomy and I hope that it can be resolved easily. I put in a call down to Fairview to let them know what's up so we will see what they say. My man junk still works but the moment of ectasy is somewhat diminshed by the twinges of pain that are not part of your normal intimate experience.
I know Karen blogged about beauty and it is true, my self-concept of beauty is marred at present. I expect that will diminish over time. What I have read from other ostomates indicates that before long you come to accept yourself and don't even think twice about your ostomy and the visual aspects of a bag on your belly.
Karen has been very supportive and keeps telling me I am beautiful. She also searched on-line and found a support belt for me. The belt allows me to wear my bag horiznontally. This means I can wear most of my pants just like before. I sometimes wear a belt, depending on how my belly feels but a belt was a real problem when the bag hung vertically. I have taken to wearing suspenders because they help hold my pants up if I don't want the tightness of a belt. Now that part of life is approaching 'normal' except that I have this bulge on the right side of my belly and the bulge grows until I empty it.
The bulge is my ostomy bag and serves the same purpose as your colon, rectum and anus for those of you with all your parts intact. I have to empty the bag several times a day and it is another aspect of my life that will take some getting used to. It is a real trick in the woods but that can be a different story for a different day. I have no regrets about my surgery though I sometimes find myself wishing my life and body could just be normal like everyone else. Or what passes for normal these days. I am not naive enough to believe everyone is normal. I know some of you better than that.
Today will be a walking day and a day to get caught up on some things that have been put aside in the past few days. John and Sue will be coming over for supper tonight and tomorrow we have Homz. And I will keep walking and taking myself out into the woods on nice days when I feel strong. I am trying to keep up on correspondence and emails but I am notoriously inconsistent when it comes to making myself check the computer. The visions I had of working on small projects while at home is not even close to my reality so far. Like I said, I have a better understanding of what retired people mean when they tell you they don't know how they got anything done before they quit work.
So, that's it from camp. The counselor is beautiful and I have a crush on her. She likes it when I bring her coffee in the morning. Thanks to all of you who have supported us. We have no doubts about the positive effects of all the prayers and good wishes you have sent our way. Take care of yourselves and your loved ones and know that Karen and I send our best to all of you, wherever you are.
Peace and love,
Mike
Sunday, November 8, 2009
Beautiful....just Beautiful
There was an man named Michael Finnegan,
He had whiskers on his chinnegan,
Along came the wind and blew them in again,
Poor Michael Finnegan. Begin again!
He had whiskers on his chinnegan,
Along came the wind and blew them in again,
Poor Michael Finnegan. Begin again!
Whiskers grow back. Every time you shave them they begin to grow again starting over from the root. Certain plants are this way; prune them back to the terminal bud or cut them back to the ground, feed, water and give them sunlight and the bloom again. Of course they go through a short unattractive period where they are all foliage and nub. Still the beauty is inside the plant hiding, waiting for the right conditions to blossom. It all takes patience, nurture, care and intimate knowledge, on the part of the gardener, who knows the secret of what is held within barren branches
Mike is not feeling especially beautiful. He's feeling a little pruned and barren. He's not feeling especially attractive as a result of cancer and surgery. Dr Madoff and his team took more than a colon and cancer out of Mike; in six and a half hours they undid what took me eight years to accomplish.They saved his life but they took his sense of self beauty. And now I am having a difficult time getting Mike to see that he still holds beauty in his heartwood. While I think he wants to believe he will feel beautiful again he doesn't exactly trust it. Mike feels unbeautiful.
When I first met him I was drawn to Mike's ability to see beauty in extraordinary places and his ability to write so succinctly about those observations. He was a broken shell but there was an inner light which seeped out through cracks in his shell. I wanted to touch and be touched by that light. I thought, if I could bring that beauty outward, if I could show Mike how beautiful he was inside, if I could get him to believe in that beauty he would, well heal and bloom. And he did. Beautiful!
It took eight years. Eight years before he finally came to believe he was beautiful and when he did he unfurled like a flower bud in warm morning light and became even more beautiful. Other people began to notice. Family and people who have known him for years began to see his beauty. I finally could tell him I thought he was beautiful without his eyes darting away to look for what? affirmation or permission from the cosmos to take the compliment or believe it? He came, after eight long years, to look at me, smile and say, "thank you" instead of "I just don't see it Karen. I feel broken."
Mike is still beautiful. Inside and out he is beautiful. Nothing has change there. Not for me. Not for many of you who have come to know Mike; who have watched him grow as a man and watched his long suppressed beauty unfold. For Mike, however, things have changed. His outward appearance is a little altered and it's hard for him. So much of our society is based on outward appearance. Our acceptance of self and others is tied up in what we look like. We base our concept of beauty on what we see with our eyes. Mike sees his entire sense of "beautifulness" as linked to his outward appearance. This is a normal reaction to an altered appearance. It's grief.
As I laid my hand upon Mike's chest the other evening I reminded him that beauty comes from the heart. What makes a person truly beautiful is not the outward appearance but what is in and what comes from the heart. I see Mike with my heart first and I still think he is still beautiful. He is still so very beautiful. I know there are others in our lives who see Mike with their hearts and believe that he is beautiful. We just have to care and nurture Mike until he sees it again. Until it's time for him to flower.
There was an man named Michael Finnegan,
He had beauty in his heart again,
Along came a storm and pruned it back again,
Poor Michael Finnegan. Begin again!
He had beauty in his heart again,
Along came a storm and pruned it back again,
Poor Michael Finnegan. Begin again!
Bloom again!
Peace,
Karen
Thursday, November 5, 2009
Jaques Cousteau and Heartburn
It's midnight o'clock and do you know where your kids are?
This kid is dead dog tired and battling a case of mondo-grosso heartburn. Gimme a break already!
The week has been pretty good. I'm back to work and Mike is doing just fine home alone. He's feeling better every day. I am impressed by how well he has done and how well he is handling his stoma. He seems to be accepting of it which is huge. I know there are still some image issue for him and that with time and patience it will resolve.
The stoma is actually a bit of a fascination for me. I know how strange that sounds but really it's a little miracle. I mean there is part of his small bowel, an internal organ, functioning as it should on the outside of Mike's body. Pretty cool. The stoma is also kind of neat looking and reminds me of soft sea creature, I once saw on a Jaques Cousteau show, blooming on his side. It's not gross or disgusting nor is it shocking it's just simply there changing every day, becoming smaller and duller in color.
In the days preceeding surgery I was saddened by the fact that Mike's beautiful belly was going to be altered by the stoma. I felt the same way about the port and the pump (which we will be getting back shortly). But really, it's not that big of a deal. I mean in one respect it is, this is true, but really, it doesn't change who Mike is and what he means to me. Except for ocassionaly bumping into the port with my cheek when I'm hugging or snuggling with Mike, I don't even see it anymore. I suspect with time the ostomy will be the same. It will be no different than the scar on his belly or the one on his shoulder. I just won't notice it so much.
The worst of the heartburn is over now. My wind chimes are singing a sweet bedtime song and I think I can go back to bed and snuggle up to the lovely warm skin of my husband and sleep.
Today was good. Today was fun. Tomorrow is another one.
Peace,
Karen
Monday, November 2, 2009
Expectation Revisited
"Expectation is premeditated disappointment."
The best advice I received about this cancer journey came from my husband on the day he was diagnosed. He said, "People in our lives will behave in ways we don't expect. Some of those close to us will move away and those we least expect will step up and be there and help in ways we never would have dreamed of."
That is exactly what has happened. We have had some of the people we thought we were closest to step back into the shadows or disappear all together from our lives. No phone calls, no visits, no nothing. I've heard things like: "I don't know what to say." "It makes me uncomfortable." "It makes me too sad to think about it." "It all hits too close to home."
On the other hand, we have had people we've kept on the fringe and people who have just recently come into our lives, be there in some very unselfish ways. These people have stepped into the void left by those whom we "expected" would be there for us or more to the point whom I thought would be here for Mike. I am VERY thankful to those who have given freely of themselves and I look to them as my own example. I just don't get the rest and their reasons for bailing on Mike he needs them most. Seems cowardly.
Maybe I'm being a critical, mostly I'm surprised and, ok, disappointed. It just seems selfish to not be able to put your own uncomfortable feelings aside and be there for your friend or family. I don't understand it; makes me mad actually.
The surgery is over. Mike is alive and home.Chemo re-starts in a few weeks. Mike is still healing and needs a good deal of rest. He can't do much because of a 10 pound weight restriction. That means he can't lift more than a gallon of milk. He can't do any real chores around the house. He can't really do any yard work. It means he can't haul gear out to deer hunt. He can't gut a deer by himself and he can't drag it. What it means is that on my days off I will go with him if he wants to hunt or wait here while he hunts alone (walking with a light pack and his gun) and then go back to the woods and help him gut and drag a deer if he gets one. Oh, sure, he could call one of his "buddies" and ask to hunt with them but you know there is a little pride left in Mike and he doesn't want to feel like a burden. So, will he call....I say no.
Why wouldn't he call you ask? Let's reverse this a little: Would you call and ask for help? Would you ask if you could tag along on a hunt if you were in his shoes? Why? Why not? Why would you not ask for help? Is it hard to ask? Do you have too much pride? Would you feel like a burden? If someone showed up and said let's do this or fix this or go do this???? Would that be different? Asking for help is a difficult thing now isn't it?
*sigh*
Well, now do I feel better for taking a few people to task? Not really. I should be happy for all the new and beautiful people in my/our lives and I should be "cleaning house" and making room for them in my/our life but I'm having trouble letting go of those of you who have been in our lives for a long time. I'm having trouble understanding your actions and reactions. I mourn for old friends and family who are not "available" who for whatever reason can't be there, especially for Mike. I don't understand you and "holy pre-meditated disappointment" I keep expecting you will change.
*dope slap*
Clearly this is my problem...sorry for putting the expectation on ya! I sure have a lot to learn.
Peace,
Karen
Saturday, October 31, 2009
Rode Test
Staff tested the functionality of the subject. Early impressions point toward continued testing as the first test was considered a success.
Thursday, October 29, 2009
Postcard from Recovery Camp
If Garrison Keillior was doing this he'd say, "Well, it's been a wet week in recovery camp.." The weather has been kind of a bummer; too cloudy for too long for my liking but I can't change the weather. I am feeling better every day. Still walking at least a mile a day and I would like to try to get another mile in this afternoon but looks like I will have to wear a raincoat to make that happen. Life is settling down here at Whiskey Jack Flats. We are using our vacation to sleep late even though lights out still comes around 9 pm. My belly is starting to feel better; the staples were removed this morning. My butt hurts when I sit too long or on hard surfaces and I squirm like a little kid while I try to get comfortable.
We have had a bit of company and that has been nice. Karen's part of vacation ends next Tuesday when she goes back to work. Me? I'll be off for quite a while yet and that is ok. Kind of difficult to deal with the restrictions because I sometimes feel like an infant, or a very old and feeble man. My mobility is good; I just can't do much in terms of lifting or carrying weight in excess of 10 pounds. That is pretty limiting.
We were on mission today to find some side-clip suspenders for me. I am wearing my normal work jeans but am reluctant to use a tight belt yet. My belly is still a bit swollen and the bag is a whole 'nother aspect. After striking out in 6 places I remembered Duluth Trading Company and bought a pair on-line. Karen is winterizing our windows with plastic weatherproofing. The plastic really cuts the icy winds and is a small price to pay for the slightly occluded view we have till spring. But.. spring is coming!
That's enough for today. I am glad to be home and safe and whole and healing. Thanks to all of you for your support in the past two weeks. I have no doubt of the efficacy of prayer and healing wishes in helping people with recovery.
Peace and Love
Mike
We have had a bit of company and that has been nice. Karen's part of vacation ends next Tuesday when she goes back to work. Me? I'll be off for quite a while yet and that is ok. Kind of difficult to deal with the restrictions because I sometimes feel like an infant, or a very old and feeble man. My mobility is good; I just can't do much in terms of lifting or carrying weight in excess of 10 pounds. That is pretty limiting.
We were on mission today to find some side-clip suspenders for me. I am wearing my normal work jeans but am reluctant to use a tight belt yet. My belly is still a bit swollen and the bag is a whole 'nother aspect. After striking out in 6 places I remembered Duluth Trading Company and bought a pair on-line. Karen is winterizing our windows with plastic weatherproofing. The plastic really cuts the icy winds and is a small price to pay for the slightly occluded view we have till spring. But.. spring is coming!
That's enough for today. I am glad to be home and safe and whole and healing. Thanks to all of you for your support in the past two weeks. I have no doubt of the efficacy of prayer and healing wishes in helping people with recovery.
Peace and Love
Mike
Wednesday, October 28, 2009
For Your Personal Enjoyment...
Mike Forbes in his natural environment! Eight days post-op and looking good!
Peace,
Karen
DIY Remodel
Today we begin the rebuilding process. We begin to rebuild, or maybe remodel is the better word, our life. Like any big project there is the point where you just wander around and look at the site. A feeling of overwhelming work washes over and you just can't visualize what it will all look like when it's done. I feel a little like that today. I feel a little lost in my own home as we begin this project.
I don't quite know what to do or where to start today. For the past months we have been planning and working toward this surgery. Emotions have been high and overwhelming. I've been walking around with fear in my belly, stress hanging on my shoulders and worry on my face. Now that the worst seems to be over I feel a little lost. The past few days I've thought I was really tired but now I have come to realize that what I am feeling is a lack of that fear, stress and worry. Oh don't get me wrong, I still am worried about Mike, it's just not that desperate worry I had even a few days ago. I am more relaxed and it seems unfamiliar after such a long absence.
Finding my way back into our regular life will come, this I know. Soon we will be back at work. We'll pick up a new routine and our life will be ours again. All of this will still take months because it isn't over yet. Mike still has chemo coming up. There is an appointment in Fargo on the 6th of November with Dr Shahidi and we will get a start date for his chemo. He tolerated his last round and hopefully will do well with this upcoming round. It's a different compound than his last chemo so we really won't know how it will affect him until he is knee deep in treatment. Still, it seems the worst is over and for that I'm glad.
Soon, we are going to go to town and run a few errands and I like the thought of that. It seems...normal.
Peace,
Karen
Monday, October 26, 2009
Wintering In...
Today, like yesterday and many of the past days, is cloudy, cold and wet. Only a few degrees separate us from snow. Only the calendar tells us it is not time.
I woke Saturday morning in my hospital room to a clear sky. The leaves on the cottonwoods lining the Mississippi River below me held a tarnished bronzed color and the sky was warming from a cold orange to a pale blue. It was the first sunshine I had seen since I was admitted on Tuesday and I was happy be sitting up and alive. I did not know that soon the morning would become a flurry of activity, aimed at my discharge to home. The question was put to me and for a moment I thought there was a wrong answer. I was not prepared to decide so soon and without any adult medical supervision. But if the doctor thought I was good enough, why not?
The trip home was difficult, mainly because my 'cushion' has been altered a bit and sitting for long periods without padding is painful and I have to shift around a lot. But Saturday night I slept with my love in our own bed. There is nothing like being home after trauma. Familiarity and safety and love count for a lot; much more than it is possible to provide medically. Those of you who have had similar experiences know what I mean. The doctors can only do so much. The rest is up to us.
So, I was at hospital camp for four nights and now I am in recovery camp. Yesterday I walked a mile. I felt good outside and was able to unfold and stand straight and move. Walking is likely to be one of the best things I can do for myself, mentally and physically.
I know I am still in the early stages of recovery and learning how to deal with my new life and new look. I do not mean to be derogatory, but I feel like a really old guy with skinny, flabby arms, no muscle tone and my pants hiked up halfway up to my armpits, with my belly pooched out. I am too young to look like that already and I hope I can gain back some muscle tone and strength as I heal.
I also have this crinkly baggy stuck on my belly that has to be emptied every few hours. I won't go into what that is like today. It is the price of being free from colon cancer and being alive. I expect after a while I won't even give it a second thought.
Today I feel like an old time voyageur that reached the post before winter. Hivernant is the term used for those that stayed overwinter. They were the true men of the north. Pork-eaters is the term for the voyageurs that hauled the gear in and hauled the furs out, back to civilization before winter set in. Most of our pork-eaters are gone now. Only Linda remains and she will help dump the garbage at the transfer station today. After she leaves tomorrow it will be just Karen and I and the other local hivernants. We should be alright. So many people have stepped up to help us and I cannot thank all of you by name at this time. You know who you are and again, we thank all of you from the depths of our hearts.
So, this is life in recovery camp. I believe another walk will be order. The goal is to keep our feet moving and keep the healing strong. My best to all of you.
Love and peace,
Mike
(and Portagerat, the old 'homme du nort')
I woke Saturday morning in my hospital room to a clear sky. The leaves on the cottonwoods lining the Mississippi River below me held a tarnished bronzed color and the sky was warming from a cold orange to a pale blue. It was the first sunshine I had seen since I was admitted on Tuesday and I was happy be sitting up and alive. I did not know that soon the morning would become a flurry of activity, aimed at my discharge to home. The question was put to me and for a moment I thought there was a wrong answer. I was not prepared to decide so soon and without any adult medical supervision. But if the doctor thought I was good enough, why not?
The trip home was difficult, mainly because my 'cushion' has been altered a bit and sitting for long periods without padding is painful and I have to shift around a lot. But Saturday night I slept with my love in our own bed. There is nothing like being home after trauma. Familiarity and safety and love count for a lot; much more than it is possible to provide medically. Those of you who have had similar experiences know what I mean. The doctors can only do so much. The rest is up to us.
So, I was at hospital camp for four nights and now I am in recovery camp. Yesterday I walked a mile. I felt good outside and was able to unfold and stand straight and move. Walking is likely to be one of the best things I can do for myself, mentally and physically.
I know I am still in the early stages of recovery and learning how to deal with my new life and new look. I do not mean to be derogatory, but I feel like a really old guy with skinny, flabby arms, no muscle tone and my pants hiked up halfway up to my armpits, with my belly pooched out. I am too young to look like that already and I hope I can gain back some muscle tone and strength as I heal.
I also have this crinkly baggy stuck on my belly that has to be emptied every few hours. I won't go into what that is like today. It is the price of being free from colon cancer and being alive. I expect after a while I won't even give it a second thought.
Today I feel like an old time voyageur that reached the post before winter. Hivernant is the term used for those that stayed overwinter. They were the true men of the north. Pork-eaters is the term for the voyageurs that hauled the gear in and hauled the furs out, back to civilization before winter set in. Most of our pork-eaters are gone now. Only Linda remains and she will help dump the garbage at the transfer station today. After she leaves tomorrow it will be just Karen and I and the other local hivernants. We should be alright. So many people have stepped up to help us and I cannot thank all of you by name at this time. You know who you are and again, we thank all of you from the depths of our hearts.
So, this is life in recovery camp. I believe another walk will be order. The goal is to keep our feet moving and keep the healing strong. My best to all of you.
Love and peace,
Mike
(and Portagerat, the old 'homme du nort')
Sunday, October 25, 2009
Tired Out
Our first day home has been wonderful. Linda is still here with us until Tuesday and has been an enormous help. I can't stess enormous enough.
I'm cooking some sloppy joes (per Mike's request) for supper while Linda is folding laundry and Mike is reading the paper. He and I took a walk this afternoon down the road and back. A mile all total. Mike used his new Nordic Walking poles and did very well. He continues to impress me with his strength and determination. Even at a slow pace he is hard to keep up with. Ok, so maybe I was a little over tired myself but still he can put a move on.
I am seriously tired today and everything feels like a great effort. I keep looking at the clock wondering if it's bed time yet even though we had a nap this afternoon. Maybe this past week has caught up with me finally. It was long and hard that much is for sure.
I'm looking forward to a much lower key week. I do know we will have Home Care out to check on Mike and make sure he is doing well. At first the thought of it made me feel like an old person but now I kinda like the idea of a nurse checking on him. I hope it's someone we know.
I think tonight we are just going to veg in front of the DVD player and call it an early evening. Sound just like what I need...what we all need.
Peace,
Karen
Saturday, October 24, 2009
Home at last
After an uneventful trip we are home and boy does it feel good. Mike is reclining on the couch looking relaxed and content. My sister and I each have a long awaited glass of Talisker and it's peaceful and quiet.
Our home is clean thank you Tammy and Claire. We love the mirror art!
Soon it's off to bed for what we hope to be a long restful sleep.
Jan, I think you can cook. Maybe you should ask Jeff though. *wink* Mike is on a low residue diet meaning nothing with skins, peals, nuts, corn...that sort of stuff. Probably no cabbage or broccoli or anything spicy.
It's great to be home. See you all tomorrow here at Whiskey Jack Flats
Peace,
Karen
Friday, October 23, 2009
Drum roll please!
Mike has had a better day today. Many things are going his way...sleep is not one of them though I did get to crawl in with him and we took and hour and a half nap. Which did us both a world of good.
He's up and walking again. He even went down to the hospital lobby for a coffee! His temp has stayed down. His pain is managed. He has been managing his ostomy which has suddenly come to life. I think that has helped him the most. He is eating cautiously. Has kicked our butts at Scrabble and (Elaine are you listening) is wearing sweats and his I-POOD shirt. The Docs are getting a kick out of that.
And now for the BIG news....his catherter is out and he is peeing! I could have cried I was so happy.
We are both tired. I'm going back to the hotel early and will be taking my sleeping pill and looking forward to a real night of rest. I am releived that Mike is better. Thankful. Pleased and relieved.
Peace and good night.
Karen
He's up and walking again. He even went down to the hospital lobby for a coffee! His temp has stayed down. His pain is managed. He has been managing his ostomy which has suddenly come to life. I think that has helped him the most. He is eating cautiously. Has kicked our butts at Scrabble and (Elaine are you listening) is wearing sweats and his I-POOD shirt. The Docs are getting a kick out of that.
And now for the BIG news....his catherter is out and he is peeing! I could have cried I was so happy.
We are both tired. I'm going back to the hotel early and will be taking my sleeping pill and looking forward to a real night of rest. I am releived that Mike is better. Thankful. Pleased and relieved.
Peace and good night.
Karen
A really long night....
It was a long night at the hospital. Mike as I said ran a fever he also had a good deal of pain, reflux and belly cramps and spasms. Watching him struggle was difficult and there was little I could do. I ratted him out to his nurse at 7:30 pm. By 8 pm we had the Colo-rectal Doc on call up to see him. They drew urine and blood cultures. Hit him with some Tylenol, gave him IV pain meds, gave him hot packs for his belly, something for his reflux and also gave him some extra IV fluids.
Mike continued to be restless and uncomfortable until about 1:30. At that time his night nurse came in and he got a sleeping pill, more IV pain meds, another hot pack and a muscle relaxant. I got chased down to the visitors lounge to sleep with two other people. One whom emitted every bodily sound known to man in various and interesting combinations.
At 5:30 I went to check on Mike. One of the student Docs was in checking him and said that Dr Moonie would be in shortly. Dr Moonie checked him over. Said she wasn't really concerned about his temp, which was down to 97.8. She said his urine was fine and that we were still waiting on the blood cultures but she didn't expect that to show anything. Sometimes people just run temps after surgery she said and we would just keep an eye on him. She also thought we may have advanced his diet too quickly. Mike will be backing up on his food for now. He will be getting something stronger for his reflux.
Dr Moonie ordered his catheter removed. He has 6-8 hours to try to urinate on his own or it goes back in. She added that there was still swelling down in the pelvis and that he may not be able to go on his own yet and that is normal also.
I'm back at the hotel for a shower and breakfast. I hope to be back before Dr Madoff shows up. I'd like to get the bosses blessing on all that Moonie said. Not that I don't trust her I think she is a hell of a doc...it's just that Madoff is the boss.
I'd like Mike to have a better day today. He needs it and deserves it. This has all been so hard on him and he could use some easy. I'd like to see him smile today...that would make my day.
Peace,
Karen
Thursday, October 22, 2009
Ups and Downs
Here I am in worry mode. Mike hasn't walked very much today. I just asked him if he wanted to go walk and he said, "NO!" He's really sleepy. In fact he just can't keep his eyes open and he is still running a fever. The fever has just steadily climbed today to 101.3 at last check.
All this is making me nervous. Yesterday I had Mike back and now...well not so much. Justine called a little while ago and has decided not to come tonight which I think was a good call on her part.
I just talked with his nurse and she is going to check on him. I'll update in a bit.
Peace
Karen
All this is making me nervous. Yesterday I had Mike back and now...well not so much. Justine called a little while ago and has decided not to come tonight which I think was a good call on her part.
I just talked with his nurse and she is going to check on him. I'll update in a bit.
Peace
Karen
Life in Oz
It's cloudy, cool and grey in the Emerald City with no signs of witches or flying monkeys. I think there must be poppies somewhere today because Mike is tired. Actually, Mike didn't sleep well last night. He has these things that look like shipping boots (for those of you horse saavy people). These boots pump up and down and help with the circulation in his legs. They are on to prevent blood clots (Sue you get this right?) They, according to Mike, are also on to disturb your sleep.
So, he is tired, a little impatient and a little cranky today.
Even though he is all these things he is still a trouper. He's been up walking seveal times today. He's been unplugged from his IV, started on oral meds, his diet has been advanced, he did stairs with Jessica and Adam from Physical Therapy (did you hear that Al? Stairs!) He also changed his ostomy while MJ his ostomy nurse looked on. Dr Munera Kapoura, aka Moonie and the rest of the staff are seriously impressed with Mike.
I am impressed by my husband. He continues to make excellent progress and for that I am greatful. I am so greatful.
Peace,
Karen
So, he is tired, a little impatient and a little cranky today.
Even though he is all these things he is still a trouper. He's been up walking seveal times today. He's been unplugged from his IV, started on oral meds, his diet has been advanced, he did stairs with Jessica and Adam from Physical Therapy (did you hear that Al? Stairs!) He also changed his ostomy while MJ his ostomy nurse looked on. Dr Munera Kapoura, aka Moonie and the rest of the staff are seriously impressed with Mike.
I am impressed by my husband. He continues to make excellent progress and for that I am greatful. I am so greatful.
Peace,
Karen
Wednesday, October 21, 2009
Marathon
What kind of day is today? A much better day.
This morning Mike greeted me with a smile and shining eyes. He was sitting up in bed AND spooning Jello into his mouth! YES!
So, our day has been full of visits from Occupational Therapy, Physical Therapy, Wound/Ostomy nurse in addition to the regular nurse checks. Mike is an incredible trouper. He is brave and strong. He has gone for two walks today - one of them a three lap tour of the floor. The nurses are teasing him about marathon training. Mike took a lesson in ostomy care from MJ and tomorrow will attempt to change his ostomy bag. His incision looks clean and pink and I got to touch his new stoma. I know that sounds a little strange but it's part of his new look and I want to be comfortable with it.
Doc dropped in just as Mike was coming back from his first walk and was elated to see his progress. He assured us again that Mike had made the best choice for himself. He told us once again that all had gone very well in surgery and that our lives would start getting back on track. Today, I believe this.
I believe the worst is past. I believe we are stronger and I believe we will have a long and happy life together. I believe in love and I certainly believe in our love. I believe there is nothing Mike and I can't get through together.
Mike looks good and is making nice progress today and for today...that is enough.
Peace,
Karen
This morning Mike greeted me with a smile and shining eyes. He was sitting up in bed AND spooning Jello into his mouth! YES!
So, our day has been full of visits from Occupational Therapy, Physical Therapy, Wound/Ostomy nurse in addition to the regular nurse checks. Mike is an incredible trouper. He is brave and strong. He has gone for two walks today - one of them a three lap tour of the floor. The nurses are teasing him about marathon training. Mike took a lesson in ostomy care from MJ and tomorrow will attempt to change his ostomy bag. His incision looks clean and pink and I got to touch his new stoma. I know that sounds a little strange but it's part of his new look and I want to be comfortable with it.
Doc dropped in just as Mike was coming back from his first walk and was elated to see his progress. He assured us again that Mike had made the best choice for himself. He told us once again that all had gone very well in surgery and that our lives would start getting back on track. Today, I believe this.
I believe the worst is past. I believe we are stronger and I believe we will have a long and happy life together. I believe in love and I certainly believe in our love. I believe there is nothing Mike and I can't get through together.
Mike looks good and is making nice progress today and for today...that is enough.
Peace,
Karen
Walking on Thread
At 10:15 pm last night Justine and I finally got to see Mike. He's been through a lot. Six and a half hours of surgery takes a toll on a guy even if he was asleep for all of it. He was tired when I saw him, so tired he could barely keep his eyes open. He was in a good deal of pain. He said all his back muscles were burning. They have him on a PCA (patient controlled analgesia)for pain management. He was able to have ice chips which was his main focus while I was there. At 11 pm Mike asked me to go so he could sleep.
It was hard to leave him. I wanted to stay with him. Be near him. Be there if he needed me but he wanted me to go get some sleep and let him sleep. I regret going now. I've been awake since 3:30 waiting as fast as I can for morning and to go see him again.I should have stayed. I just want to be with Mike. I need to be with him. I'm still scared and sad and even though I'm surrounded by people, good people, people who love me and love Mike I feel alone.
The surgery is over and that's good. Still, there is so much looming. Many unknowns yet. There are long days ahead for both of us and we will need a great deal of strength to walk this portage. At 5 am it's hard to figure out where that strength is going to come from. I am completely exhausted yet sleep eludes me. I feel thin, precarious as if I am walking on a thread. I'm getting weary of crying or fighting tears. I'm tired and I can't sleep.
Terry and Judy will be leaving for Hudson, Wisconsin. Tammy will head back to Bemidji. Linda will remain and Justine will be here after class. I have no way of knowing what today will bring or how Mike will do. I will be at his bedside and do whatever small things I can to help him along on his recovery. I'm thankful all went well and that I had good people near me. Still, it's Mike I need and when he's ok I'll be ok. We need to be ok.
Peace,
Karen
It was hard to leave him. I wanted to stay with him. Be near him. Be there if he needed me but he wanted me to go get some sleep and let him sleep. I regret going now. I've been awake since 3:30 waiting as fast as I can for morning and to go see him again.I should have stayed. I just want to be with Mike. I need to be with him. I'm still scared and sad and even though I'm surrounded by people, good people, people who love me and love Mike I feel alone.
The surgery is over and that's good. Still, there is so much looming. Many unknowns yet. There are long days ahead for both of us and we will need a great deal of strength to walk this portage. At 5 am it's hard to figure out where that strength is going to come from. I am completely exhausted yet sleep eludes me. I feel thin, precarious as if I am walking on a thread. I'm getting weary of crying or fighting tears. I'm tired and I can't sleep.
Terry and Judy will be leaving for Hudson, Wisconsin. Tammy will head back to Bemidji. Linda will remain and Justine will be here after class. I have no way of knowing what today will bring or how Mike will do. I will be at his bedside and do whatever small things I can to help him along on his recovery. I'm thankful all went well and that I had good people near me. Still, it's Mike I need and when he's ok I'll be ok. We need to be ok.
Peace,
Karen
Tuesday, October 20, 2009
Update #3
Mike is out of surgery finally. He is heading to recovery as I write.
The tumor had, with the help of chemo and radiation shrunk to the size of a pea and Dr Madoff is confident that he had good margins and has all the cancer.
He said Mike did well during surgery and I should get to see him in an hour and a half to two hours.
It's been a really long day. I am thankful for all the support I have had and I am thankful Justine was here. She did really well and I'm proud of her.
I will probably not write more tonight. I do want to take a few lines to thank all of you for your long distance prayers and thoughts. We will never be able to thank you enough.
Peace,
Karen
The tumor had, with the help of chemo and radiation shrunk to the size of a pea and Dr Madoff is confident that he had good margins and has all the cancer.
He said Mike did well during surgery and I should get to see him in an hour and a half to two hours.
It's been a really long day. I am thankful for all the support I have had and I am thankful Justine was here. She did really well and I'm proud of her.
I will probably not write more tonight. I do want to take a few lines to thank all of you for your long distance prayers and thoughts. We will never be able to thank you enough.
Peace,
Karen
Update #2
Dr Madoff just came out to update us. He said that they have Mike's colon detatched and they are flipping him over to finish taking out his rectum. He said there was a good deal of adhesions and scar tissue that he had to work around and all of that took time. Dr Madoff said there was no additional cancer and no surprises. Mike will be in surgery another hour and then in recovery for a while.
So, I'm guessing I'll see Mike again some time around 8 or 9.
Peace,
Karen
So, I'm guessing I'll see Mike again some time around 8 or 9.
Peace,
Karen
Update #1
It's 5:05 pm. Mike is still in surgery and is expected to be in surgery for two more hours. I've had two phone calls from the OR and a visit from the Anesthetist. They say all is going well and his vitals are rock solid. It's just taking time.
Dr Madoff I'm told is double and triple checking everything. I have a pinky swear from him that this will all go well and Mike will be ok.
Still, this waiting is killer. I just want him back.
Peace,
Karen
Dr Madoff I'm told is double and triple checking everything. I have a pinky swear from him that this will all go well and Mike will be ok.
Still, this waiting is killer. I just want him back.
Peace,
Karen
Jumping Off Places
Sigurd Olson talked about jumping off places in one of his books; the places where you step off into the wilderness and leave civilization behind. At home the past two weeks have been a frantic flurry of activity, trying to get ready for today. Managing our respective work requirements, the chores at home that need to get done before winter, assembling various medical tests and records and visits left no time to catch our breath, to be us. alone. I don't know how many times stress and fear filled my eyes with tears, yet I was never in a place where I could let them go. Or it was never at a 'good time'. Now I am a few hours away from surgery and I still don't feel like there is time, or that this is the place. I think perhaps, the moment has passed.
This morning Karen and I are in a jumping off place we did not choose. The anticipation has not exactly been positive and the preparations carry a somber tone. This is not my idea of an ideal six week canoe trip. This is our summer vacation. I am glad I have PTO saved up for this trip and I am glad I have insurance but this is not the trip of our dreams.
Outside the window I have a view of the U of M Aquatics Center, parking garages, the new stadium, students and traffic zipping back and forth. There are no Duluth packs waiting by the shore. No canoe waiting, no spruce and pine on the horizon. This is the strangest jumping off place I have ever seen and now it is one of the most important in my life, in our life. The maps are vague and we are not sure what difficulties we will encounter along the way. Unlike most of our trips we have the support of friends and families and we appreciate all their efforts and kindnesses. But in the end we will probably depend most on each other. That is just the way we are.
Karen and I made love for the last time while I am still normal. Now we are showered and she is going to breakfast with her sister Linda, who cut short a vacation trip to Hawaii, to be here with us. My brother Terry, and my sister-in-law,Judy, drove up from Georgia and spent the past few days with us. They drove down with us yesterday and are staying with us for the surgery. Justine is taking the day off from school. She has been through this before but so many years ago. Why couldn't the cancer have stayed away forever? Two other friends, Tammy and Karen, are also coming down to be with my Karen. The waiting room may look like a full house before we are done.
A whole lot of time and money and effort is being expended to keep me alive. And to what end? I guess I can spend the rest of my life trying to figure that one out, trying to see if in the end I was worth all the bother.
Karen and I are wet-foot canoeists and sometimes getting your feet wet for the first time is the hardest step. Let's see if the water is cold...
Peace and love to all of you,
Thanks for all your wishes and support and love and care.
Mike
This morning Karen and I are in a jumping off place we did not choose. The anticipation has not exactly been positive and the preparations carry a somber tone. This is not my idea of an ideal six week canoe trip. This is our summer vacation. I am glad I have PTO saved up for this trip and I am glad I have insurance but this is not the trip of our dreams.
Outside the window I have a view of the U of M Aquatics Center, parking garages, the new stadium, students and traffic zipping back and forth. There are no Duluth packs waiting by the shore. No canoe waiting, no spruce and pine on the horizon. This is the strangest jumping off place I have ever seen and now it is one of the most important in my life, in our life. The maps are vague and we are not sure what difficulties we will encounter along the way. Unlike most of our trips we have the support of friends and families and we appreciate all their efforts and kindnesses. But in the end we will probably depend most on each other. That is just the way we are.
Karen and I made love for the last time while I am still normal. Now we are showered and she is going to breakfast with her sister Linda, who cut short a vacation trip to Hawaii, to be here with us. My brother Terry, and my sister-in-law,Judy, drove up from Georgia and spent the past few days with us. They drove down with us yesterday and are staying with us for the surgery. Justine is taking the day off from school. She has been through this before but so many years ago. Why couldn't the cancer have stayed away forever? Two other friends, Tammy and Karen, are also coming down to be with my Karen. The waiting room may look like a full house before we are done.
A whole lot of time and money and effort is being expended to keep me alive. And to what end? I guess I can spend the rest of my life trying to figure that one out, trying to see if in the end I was worth all the bother.
Karen and I are wet-foot canoeists and sometimes getting your feet wet for the first time is the hardest step. Let's see if the water is cold...
Peace and love to all of you,
Thanks for all your wishes and support and love and care.
Mike
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