What Ho, All !

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

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

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.

"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

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

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

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.

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

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