Rode Test

Staff tested the functionality of the subject. Early impressions point toward continued testing as the first test was considered a success.

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

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

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')

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

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

Home

We are coming home! Mike is being discharged today and we are coming home.

Peace Karen

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

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

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

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

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

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

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

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

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

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

Survivor Man

We are in at the Radisson in Minneapolis and feeling a little lost. There seems so much to be said yet words won't come. Mike is doing his bowel prep and waiting for "things" to start happening. Oddly enough Survior Man is on the TV. Some stupid guy taking risks to show the world how brave or stupid he is. You want brave....you should be in Mike's shoes right now.

Surgery is at 1:20 pm so it will be a long dry morning for Mike. We have to be at the hospital at 11:20 am to prepare. I guess. How do you really prepare for any of this? I don't have anything to tell you about how long he will be in surgery or how long he will have to stay at this point. I bet we know that tomorrow.

What I do know is that we will take all the prayers and thoughts we can. I will post as soon as I am able to after surgery.

In the meantime...Peace,
Karen

Lucky

We don't think we are anything special. A friend of mine once said "The harder I work the luckier I am." We are lucky.

We have been hearing from you our friend and readers what a special thing Mike and I have and it is humbling to hear this from you. Today this email came from our friend Sharon and I am taking it on good faith that she won't mind my sharing it with you because it is a beautiful tribute.

We are lucky to have all of you in our lives and we are extremely grateful for all the love and care you have shown us. Tomorrow we start on an incredible journey. A journey that won't come without pain and difficulty. But because we have you to share our load with it will be a little easier.

Keep tuned to the blog and I will update you as I can and as always keep us in your thoughts and prayers in these next few days.

Peace and lots of love,

Karen

Email from Sharon

I know these people ~ miss them exquisitely ~ they’re quite an amazing couple that have amazing journeys together.  And they have shared many of them with me in many ways—words, silence, photos, laughter, tears, food, drink, and most of all love.  To be in their presence is to be in the presence of some of the most raw and intense love I’ve been witness to.  And I’ve learned much … by watching/experiencing them navigate their relationship living in a tepee –- figuring out how to keep things dry, warm, cold, how to BE, separate and together, in a small, round area with no doors (physically) to shut, yet keeping emotional/psychic doors open – even having to sometimes push hard on those doors, with love.  Then there’s all those amazing, carefully orchestrated but nevertheless beautifully flawed (cuz nothing is perfect, and yet it is), trips through the BWCA.  They paddle, portage, set up camp, tear down camp, cook, write, take photos, catch dinner; sometimes in cold rain, sometimes in warm sunshine; slogging through and gliding through.  They are a well-oiled, so to speak, team that works well together in all types of situations.  They have systems, a rhythm, a love, that gets them through it all.  They always, even facing daunting odds, figure it out.

They sow, grow and reap, they honor, shoot and butcher, they bless, tap and boil, and they gaze into one another’s eyes/souls with sacred adoration that is truly a sight to behold.  And now their current journey ~ the cancer/ostomy fucking deal.  I know they will figure this one out too.  But WHY?  And HOW?  I don’t know these answers.  What I know is that they will.  They will figure it out.  With laughter and tears and silence and screams and rants and tenderness and honor and LOVE.  For they have that kind of love, and courage and strength. 

Dearest Mike and Karen, I adore you both, want to hug you gently and long. And one day in the not-too-distant future I will physically do that.  Until then, in my thoughts, prayers, dreams, deep and safe in my heart, I hold you dearly.  Thank you for gracing my life.  Sharon

Peeps

We are a week out from surgery now and it's all a little to real.

This afternoon we go to the clinic for the ET nurse to mark Mike for his ileostomy. We are going to be sticklers for where the stoma is placed because Mike plans on being active. We plan on going on with our lives. He's even taken his backpack with so that placement doesn't interfere with the hip belt. What this means for me is that I'm not going to get out of hiking the entire Superior Hiking Trail, the Border Route and Kekekabic Trail in Minnesota. It's all a little scary....

Our entourage is building. We have my sister Linda flying back early from a Hawaiian vacation to be with us on surgery day and stay with us until we are settled at home. My friends Karen and Tammy are coming to wait with me on surgery day. I think Justine will be with us too. And, we just got word that Mike's brother Terry and his wife Judy will be coming here this week and then will follow us to the big city to be there for Mike and I on surgery day. It's good that Mike will have some of his own family there. He needs all the love and support he can get.

Back here I know all of you will be thinking and sending good thoughts, prayers etc. Dave, Tammy, Claire and Caleb will be house/critter sitting and that takes a huge weight off my shoulders.

So, that's where we are today. I have salsa on the stove and more tomatoes to deal with yet today. I've decided that tomatoes are like zuchini - you don't have to plant them because sooner or later someone will have too many and want you to take them. That's my case. My boss Carol gave me plenty and now they need tending. Our garden is done except for a few carrots and beets which can just wait. I don't have the dead plants out but that will give me something to do this spring. Later this week I will take my bulbs out and call it good. It was a pretty good year for our garden and we have plenty to eat for the winter thanks to my son and daughter-in-laws help!

I'm gonna go have a cup of coffee and watch the snow fall for a while and head back to the 'matoes.

Peace to All
Karen

First Day of Winter

Yesterday morning we had 20 degrees. By the time I returned home from work the sunflowers and cosmos had shriveled to blackened husks of their former glory. The beets and carrots were ok, but they are in the ground. Everything exposed was suddenly dead. At work, the lakes had tempered the air, keeping it from being as cold but frost was there nonetheless. As the day warmed, leaves began to fall, letting go and drifting without force or direction till they landed on the grass, wet with melting frost.

Last night we went to see Judy Collins in concert in Grand Rapids, with our friends Jeff and Cindy. I have to say Judy Collins was great.  She is 70 some and her voice is nearly as good as it was back in the day.  Afterwards we met with Sue and John and all of us went out for coffee which was really just an excuse to eat breakfast late at night.  While we sat in the restaurant heavy wet flakes of snow began to run before the wind, slapping down on the wet ground, creating slush on the road, making the drive home a challenge for Jeff. I was thankful I didn't have to drive. I could barely stay awake and dozed most of the way home.

This morning the ground is covered by a thin veneer of snow, deep enough to hold tracks from the dogs running out to do their business but not deep enough to hinder movement.  The next few days are supposed to be more of the same; cold, windy, chance of snow with no real accumulation.  Soon enough the weather will moderate and autumn will return briefly, though in an altered state. By then we will be in November and the reality of winter will be a fact of life.

Karen is at work now.  The store is sponsoring a 'Quiltorama' at the country club and there has been lots of activity related to getting ready, lots of stress for my woman who is already carrying the weight of hell on her shoulders. And last night was difficult; stress and being too tired and worried and afraid and having to begin the process of grieving the losses we will face in 10 days. This has been too much, even for Angelique. Today we are skating on the thinnest of ice, holding our breath to make ourselves lighter, hoping not to break through the brittle layer to the cold abyss below.

I worry for my wife. I don't know how to help her, don't know how to make happiness appear in our lives again. I don't know how to make light and hope blossom on Karen's face again.  We try to talk but effective words escape us. Nothing we say offers solace. I struggle with the feeling I made the wrong choice, that somehow if I had chosen a different option Karen would be happier. But maybe she is right, none of the choices were good. We have to go on and looking back won't help.  I try to tell myself we will never really know if I made the best choice. In life there seems to be only one thing that is guaranteed.

Karen won't be done till 7 pm. That's just too damn long today; for both of us. We both need sleep and release from our tensions and fears.  We both need to find a way to let our tears flow. My head aches and I can only try to imagine how Karen feels. We know, but scarcely believe that our lives will get better. We feel we are already locked deep in winter with no hope of moderation or relief. Today we are the blackened shriveled cosmos and sunflowers and it is hard to believe in spring though we know life, in an altered state, will return again.

Thank you for the birthday and anniversary cards and wishes and gifts.
Peace, love, happiness, sunshine and the hope of spring, to all of you.
Mike

Wake up call

5:00 am and I answer the phone.  "Hello, this is Anita from the response center. You have a Zone 1 malfunction at the Bemidji Wastewater Treatment Plant."  She apologized for getting me out of bed so early and hung up. The days keep coming even when you aren't ready to face them.

Lately our days have been too full of anxious indecision.  Most of that is due to me.  For me, there were too  many choices and none of them looked inviting.  In the end, (no pun intended) I went with my gut, (again, no pun intended) and made the choice to avoid having colon cancer ever again. Today I called Kelly, the Clincal Nurse Specialist who works with Dr. Madoff and told her I wanted my colon removed.  I chose the permanent ileostomy because I never want to go through colon cancer again.  I know with my family history and the presence of Lynch Syndrome, I may still have the opportunity to get a different cancer. But I am taking this risk now, to avoid the possibility of something worse, later.

There are so many ways to argue this; back and forth, pro and con. I feel I have been through all of them by myself, and with help, for the past week and it has been hell.  Enough is enough. I had to make a choice. Waiting was killing us and we were running out of time. It has been one of the most difficult things I have ever done and I am not happy about the process. I don't feel there is anything to be happy about, yet.  I know I will come out of surgery alive. I have a job and insurance. And most of all I have a lovely wife.  I am thankful for all those things. It is just that the available choices made me think of a condemned man waiting for the firing squad. "Hey" the captain asks, "do you want to get shot at dawn or wait till noon?"

So, that's that. Today I feel beat up and my eyes ache with tears and we go on.

O, one very important thing before I go tonight. I called home this morning as Karen was getting ready for work. She said she was curling her hair and putting on makeup because some people had come into the store and told her she was looking terrible.! Can you believe that! My lovely wife is going through hell and someone is thoughtful enough to tell her she looks terrible.  How can that possibly be helpful?  How can anyone be that stupid?  The whole thing just pisses me off! I bet that whoever said that is the kind of person that steals candy from kids at Halloween. I don't even know why I am telling you about this because I bet that person can't even read.  I don't ever, repeat ever, want to hear that kind of crap from anyone or I will put my foot so far up your ass you will have to untie my boot to swallow! Got that?

There; that's my mindful Buddhist thought for the day.

We have a direction now and can start moving our feet again. Life will be different but we will still have life.

Peace and love to all of you except for the idiots that insult my wife,
Mike

Never say Whatever

Today, I need a miracle. Mike has made his decision and I'll let him share that with you. What I will share is how completely exhausted and scared I am. I'm ok with what course Mike wants to take. I need to say that. I want for him, what he can live with and what will give him the most piece of mind. What he can live with I can live with. I'm glad the deciding is done and we can move forward. We need to move forward.

Still, no matter what surgical option he/we chose there is still a high risk of  imparment or loss of urinary and or sexual function. This is what hit home last night as we lay in bed. It breaks my heart to even consider we would have making love taken by this cancer. How much do we have to loose?  How will we deal with that? How have we dealt with all this so far? When is enough...enough?

I'm tired. I need a break, we need a break. I can't imagine what it must be like to be in Mike's shoes; what it must be like inside him. He's dealing with his own stuff and watching me, trying to help me deal with my stuff. (and lately I suck at that - dealing with my stuff) He's being so brave right now and I admire him for that. He finds ways to smile and breathe. All things I can't find in myself right now. I have envy.

Yesterday, we met with Dr Roy for a consult. Dr Roy repeated everything we had heard before. Roy is a kind, empathetic man and I think it bothered him to not be able to give us what we wanted to hear. We left the clinic no further ahead, no closer to a decision, or rather Mike no closer. From the armchair it's easy for me to say what I'd do; I'm not down on the field getting dirty and beat up.

For the past several days I've been impatiently trying to pry a decision out of Mike. Not helping but hindering the problem in doing so. In the parking lot I tried one more time to elicit an answer without any luck. I left Mike standing alongside the car as I  drove away in anger. What I wanted from Mike was an answer. An answer so that I can grieve it and move on. Move on so that I can be ready and strong for him. So I can educate myself and prepare for the days ahead and be a good wife, a strong wife, his rock.

Instead, I got nothing and got nowhere except stuck. I carried the anger around all day and drug it home with me. Over dinner Mike called me on it, we had the conversation, the decision was made and then I was stupid. Stupid came rolling out of my mouth and sounded like this:  "Whatever"   I'm talking about his life. I'm talking about the hardest decision he'll ever make. I'm talking about our future, HIS future and I say, "whatever". As if he isn't hurting enough. He comes to the one soft place he has, throws out his heart and I selfishly dismiss it.

I understand my own pain, I get that I'm tired and stressed - my job right now, garden stuff that still needs taking care of, appointments, the house etc. I understand some dumb things will get said but why did it have to come from my mouth? I am so sorry I said it. Mike talked to me later and told me how much that had hurt. I apologized and tried to take it back but it went out there into the universe and I can't take it back, but I bet I get it back someday - the universe has a perverse sense of humor.

We are down to counting days now. Days till our world changes. I'm looking forward to the cancer being gone and moving on. I believe they will get the cancer, nobody has indicated they wouldn't. I want the surgery to go off without a hitch. I want there to be no complications. I need this, Mike needs this. We need this small miracle. This all needs to stop...it just needs to stop. We just need a miracle.

Peace,

Karen

It could be Monday...

It could be Monday, if it has to be, I guess.

We are evaluating the options and I think it is fair to say Karen is probably more certain about what she would choose, if that were the case.  I found a discussion board of 'ostomates' and put my questions out to them.  I want to hear what people who walk the walk, would say. And tomorrow we will meet with Dr. Roy, to bounce some of this off of him.

Yesterday we received a copy of the pathology report concerning my messed up gene. If, (there is always an if) Fairview had followed up on the genetic link back in June when they first suspected it, we could have had blood work done in time for a positive confirmation. We can still do the blood work but the result wouldn't be available before the surgery date.

Like Karen told some of our friends, it is so surreal to have these conversations. "No one should have these conversations" and she is right. So we had one last Friday night in a very noisy bar while waiting for a burger and a beer.  Complete privacy in the midst of a very public uproar.

O, before I forget. Apparently some friends thought one of my comments in my last post meant we do not want people showing up. That is not the case. Karen and I are very comfortable with just each other for company but we do love visiting with friends and family. In our early history together, we only had each other.  I think some people see what Karen and I have together and make it their choice to stay away; i.e., to not intrude.  Somehow I have the feeling I still didn't get it right.

O well, it is Monday, again, after all.
Peace,
Mike

Bittersweet...

Sorry folks, the love of my life beat me to the blog and left me with tears in my eyes. I cannot improve on what Karen said. We are best friends as well as lovers and our days keep getting better in spite of what we are facing. I cannot ask for more from anyone and I cannot ask for anyone better for me than Karen. I love you too, babe.

What I am contributing today is an excerpt from yesterday's journal entry.

(6:15 pm-WJF)
"Chicken pot-pie in the oven- the biting scent of garlic fills the kitchen-drifts out to fill the living room. Carrots, potatoes, onions from the garden along with a handful of peas- the second planting coming to a late fruition.

Grey, misty day. Longfellow hauled Karen's GMC out to Keith so we can have the transmission looked at, fixed. In town we bought steaks for tomorrow- a few other groceries. Achy, tired, needing both a nap and a long walk to work the kinks out. Instead we dug potatoes, onions- picked in the squash and pumpkins, one beauty set aside for Seth Lee.

We worked side by side; first in the garden, then the kitchen, making supper, doing dishes. That is who we are. We are at our best together. Others must know this- they notice and tell us or they notice and stay away, leaving us to ourselves. And often that is the best.

Bittersweet is what fall is about. Bittersweet is what I did with my mother and grandmother, collecting the orange berries to hang inside above the oak buffet-flanked by skinny cattails. MacIntoshs and Jonathans and Sharp Cheddar cut with the paring knife, kept always in the glove box of the old '41 Ford. Bittersweet is Sunday afternoons in the refuge looking for berries on vines in trees in the autumn woods. After all these years autumn is still about bittersweet- the metaphorical message too bright to ignore. Bittersweet is what time feels like these days and the thought crosses the mind but not the lips because one cannot, must not, should not, admit that we do not know when the end will come and if what we are doing, perhaps picking red-orange berries to hang in the house- might not be the last time, at last, forever."

Peace and love to all of you.
Mike
and
Happy Anniversary to Angelique,
I am lucky to have found you when I did.
Love,
Portagerat

Happy Anniversary

Six years ago on a perfect blue day I married the love of my life.

Our road has not always been easy.  We've had to work hard and fight for what we have and I'm not talking material things. We've worked at our relationship;both of us allowing growth and change in our lives. We've become better people, more understanding, more patient. We have made it safe to be ourselves and say what we feel without fear. We are, I believe, as intimate as two people can be.

Six years ago the sky was blue, the leaves were at peak color and the day was warm. Our friends and family gathered as we joined our lives and we danced into the night in a lighted hay shed. Today, it's cold and drizzling. We had plans to go to the river, sit in the sun by the water, drink tea and watch the vultures soar on the thermals overhead and maybe pick some cranberries. We may still do that if the rain lets up, though I'm sure we will be bundled up - high of 47 today. If we don't, so what? We'll spend time here with each other and that's what matters to me. The time.

Time is all I ever really wanted and time is what I didn't get in my first marriage. Time is what I get with Mike and why this all works so well. We make and take time. So, on this, our Anniversary, we'll spend time together. Maybe we will read, play a game, make some salsa out of our tomatoes, take a nap together or go for a drive. I don't know and I don't really care as long as we are together.

Mike is my best friend and love of my life. There has not been one second of one day that I have regretted being his wife. Not even now when this is all so hard.

Happy Anniversary My Love

Karen

aka - Angelique

Let's Talk

We need to talk. Mike and I need to work our way through this and talking is the key but how can you talk when you don't even know what to say? I have some big unnameable feeling that I can't find the words for. It feels hollow and empty yet, there is something big lurking in all that hollowness. It feels like all my contents have been emptied out and are lying there on the floor and I'm just too tired or maybe apathetic to bend over and start putting them back. I keep kicking them with my toe; nothing seems worth picking up.

We need to talk but how do you start the conversation? How do you start talking about how to make a decision like taking your whole colon out of your body? How do you talk about the risk of leaving it in? How do you decide to try for a resection vs just going for the full Monty? How or, better yet, why do we have to have the conversation of future cancer? It's all so much, too much.

Yesterday I found myself becoming angry at an old guy at a coffee shop who looked old but healthy. Why him? I don't know his story, I get that, but I want that for Mike and I want it for me. I don't really want a hole in his side with a bag attached and fecal material oozing forth. I don't want that at all. I don't want him to have a resection that could potentially impair his bowel control either. I don't want to think about how the surgery, regardless of what we decide to do causing impaired urinary function and or sexual dysfunction. How do you think about this? Seriously? How do you make this decision?

How do you know there is a break in a genitic code which puts him at higer risk for recurring cancer and then think there are any other options besides taking his colon?

It's so much. It's too much. In the end my goal is to have Mike. That is the only thing I know. I'm tired of the stress. I'm tired of having to think about this cancer. I can't think. I can't process and I can't fix it. I can't fix Mike and I hate that.

I need to pick myself up here soon and keep my feet moving. I need to do this for Mike. I need to be there for him and I need to be strong and brave for him. I'm sure I'll find that, I just hope it's soon. Right now, it all just seems too hard.

Peace,

Karen