We know it could be worse...

I just had to say it: We know it could be worse so please, please, please don't let those words come out of your mouths or leap off your keyboards. Ok?.. Ok.

This morning was a case of not very good news and a bit worse news. See, there is almost always a choice.
The good news is that the tumor we saw back in June is now just a bump on the inside of my rectum; a bump connected to a red line marking where the whole ugly thing used to live.  The bump we saw today is actually kind of a two- headed bump. So, the chemo/radiation did do something good. The tumor is still so very low the chances of getting a good resection are not very good. There may not be enough healthy tissue below the tumor to allow reattachment to the rest of the rectum.

Dr. Madoff is still leaning toward a permanent ileostomy. He sees the removal of my colon as one of the best surgical options.  That means I wouldn't have hemorrhoids anymore because the rectum and sphincter would be removed as well. There are some options which are more a matter of degree.  The choice is ours, or mine, and we are still in shock and still trying to learn what we can.

This is complicated, or simplified, depending on your point of view, by the introduction of a possible genetic factor.  I am going to be a bit confused here, because that is how I am right now but, they looked at my old tumor from 1991 and found that there is a genetic thing missing and this thing tends to make it look like I have Lynch Syndrome.  This is found in a small portion of the general population but people with Lynch syndrome have a greater risk (60 to 80%) of getting a colon cancer, than the general population.  I think I will try to get a copy of that report to study it and we may be pursuing testing for confirmation.

So, with the real possibility of having Lynch Syndrome, which means I have a greater liklihood of getting more colon cancer again later, we have some difficult choices to make. Karen found more about Lynch Syndrome on the Mayo Clinic website and you can go there too.

Surgery is still scheduled for October 20th and we have a fair idea of what has to happen between now and then. And we made reservations at the Radisson for Karen and Nelson. We are still waiting for the definitive results from yesterday's MRI and I will be having a chest/pelvic CT scan too.

SO, Give Us a Break- for a few days. We need time to process this. Pretend it is Sunday till we tell you it is Monday. Just keep us in your prayers and thoughts and we will keep you in ours.  We are in this together though I do not want all of you in my room in October. It will be too damn crowded.

Peace and love,
Mike and Karen

Do or Do Not

We are an hour from Mike's appointment with the surgeon. The MRI results should be in his hands when we get to the office. It holds news we want to hear or may not want to hear.

My belly is fluttering and I keep reminding myself to breathe. I'm nervous. Anxious. It feels like we are going to hear about the rest of our lives today and I guess we are. I want good news. Mike wants and needs good news. Last evening over drinks with Justine he said he didn't know if the news was the cancer has spread if he could do this, fight that is. He said he was tired and sick of fighting for sleep, for a good life, for happiness for cancer.

I don't know how to make him fight. I don't know how to carry all the bags, the paddles, the boat and him over this portage. He said he wanted to quit but there was no place to quit to. That is my line, a discovery I made on a difficult portage on our first trip out. It's my rule and I hope beyond hope that Mike hears himself and understands because with this cancer there is a place to quit to...he can quit if he wants at any time and death is the place to quit to.

I don't want that. I don't want to hear anything today that would indicate that quitting would be a viable option. So, I'm trying hard to suck it up, to "butch  up" or as Diane would say , "Snap out of it bitch."

This is a  case of do or do not there is no try. Wish us luck, in 45 minutes everything changes.

Peace,
Karen

Heck of a Deal

Well didn't that just go the way all our appointments go down here in OZ. We got to the MRI at the prescribed time, 10:30 and were told your appointment isn't until 12 noon. Come back later.

Seriously, is this not Wizard of Ozish? So, we had the front desk call someone in Patient Relations, Kristen, who listened to us complain about the communication in the system and what lack of confidence we were having with both the hospital and clinic. ARGH what is their deal?

The short story goes like this: Mike got in to his MRI before noon. Thank goodness we hadn't left the facility and someone heard us. Still, we are extremely frustrated. Tomorrow is the appointment with the surgeon and a flexible sigmoidoscopy. We'll see if they get this right and I believe Mike is loaded for bear and Dr Madoff doesn't know it yet, but he is invited along on this hunting trip.

What a deal!

Wish us lots of luck!

Peace,

Karen

Back to see the Wizard

Yup, road trip! Not the kind we usually like to do - spontaneous and without a map. This one is to Minneapolis to get a 3TMRI and "the rest of the story" from Dr Madoff (Maddog). To say we are looking for good news would be a huge understatement.  It's what we both need. Heck it's what we all need!

We are taking the puter with and when we know something you will know something. Tonight we will be staying with our friends Jon and Trish in St Cloud and tomorrow is the MRI. Wednesday is the appt with Maddog. The tenative date is still October 20 unless we learn something different.

Keep positive thoughts heading Mike's way and we'll letcha know when we know!

Tammy and Clarity! Thanks for watching the house!

Peace,
Karen

Oh- Bark -Thirty

Mike is out with some of our friends and I am here in our home where it is currently quiet! Again, last night it was barking dogs or more specifically one barking dog at our immediate neighbors. Two calls to the Sheriff produced no relief since the people would not answer the door. We are beginning to understand the torture effects of sleep deprivation.

Our animal control guy finally, after a week, made contact with these neighbors by leaving a voice message asking which member of the household wanted their name on the citation he was going to issue. During the course of the conversation our neighbor referred to us as "those ass-hole neighbors". Awesome, a new nickname. Like I care. Two years we've tried to deal with this on our own and now because we just want to sleep we are...well you know. Our "guy" suggested to the neighbor that perhaps he'd like to tell a judge what kind of people we were who wanted to sleep all night without a dog barking. I'd like to be there for that. So, there was promise of a bark collar. We'll see. I'm sick of it.

We will see how tonight goes. I think we've had something like 5 or 6 nights this month where we've been able to sleep all night. Wish us luck.

Peace

and quiet please

Karen

6:30 Yoga

My head is on better today or....maybe not. I did after all just go to a 6:30 am yoga session with my friend Tammy. After the initial shock of getting up early and finding they didn't have coffee and donuts at the studio, it was pretty darn nice. I felt even a little smug as watched people hurrying past the studio in their cars while I was stretching my way into the day. It was a nice start and I feel all bendy and focused now.

It's easy to forget the simple things that work for us; the things that bring us back to center, like yoga and good friends.So here I am, relaxed and ready for work. My head is screwed on straight and the day looks just fine. Thanks Tam for knowing what I need when I don't know what I need.

Peace and love ya,
Karen

Oh look! A Chicken!

I'm finding it hard to focus today. I flit between things - reading three books, cleaning, the computer, knitting, a lame attempt at a nap and a bath. Nothing of any substance or meaning has occured today. Each time I begin something I'm distracted. Even the short visit I had with Tammy today was a staccato of words and ideas. Nothing formed just a scribble of words in the air.

Yesterday, I walked along the shore of the big lake - Superior- in bare feet. Waves, portending of a wind shift, fanned under my feet, pulled sure footing away in grains. Still, my mind and eye stayed focused on finding smooth, lake tumbled rocks and pebbles and I kept moving. The occasional THONK of one wave's retreating stopping another wave's advance caught my attention but only briefly. Same with the odd wave crawling foam up my calf. I was able to take myself back to my task even with the gulls crying and Mike showing me what stones he had found.

Today, not so much. Maybe I'm still at the Lake. I needed to be there yesterday and maybe I still need to be there today?  Even now, in the writing, I'm not entirely here I'm somewhere else. I'm thinking that this writing will take me to some special place where the answer will be wrapped up in a tidy little paragraph that will make even me go, "ahhhhh." I was even thinking earlier that I was going to have a poem to write. Now I'm thinking...OH Look! A Chicken!

I have a run-away brain, monkey mind, KFKD playing on the ole cerebral stereo. I'm restless. I've lost my focus. I've lost myself.

If anyone has seen me please send me home. You can keep the chicken.

PIECE

Karen

Sorry, it's about my 'Bad Head'

Today I am broken.

Days like this used to fill my life for days and weeks on end; for months and I have to believe, for several years as well. My head aches and my eyes ache with tears that won't fall and I want to run, but where? I can't get away from myself. I know because I used to try.

I cannot remember the last time I felt this way.  I suppose I could find out by perusing a past journal. More likely, Karen might remember but I can't. And that is a good thing. I used to call this 'bad head'; not very original but certainly apt. Today I am just trying to outlast this feeling; just trying to keep it from digging in to stay because I know that my life doesn't have to be this way. Karen showed me this and is trying so very hard to help. My heart breaks because I can't even tell her what is wrong. Words fail and I feel so stupid because I should be able to say what is wrong; should be able to put it out there so we can fix it.  I want that feeling. I need that feeling. O, I need that feeling more than I can say.

Few things in my life are, or have been, more frustrating than days like this. Today I am afraid of having that devil, depression, coming back into my life; like I need more bad shit. I remember back when I had to deal with this all the time and telling someone that having had both cancer and depression, I found cancer easier to deal with because at least you can find the tumor and treat it with drugs and surgery; you can do something about it. I know there are drugs to help combat depression but I do not want to return there. My seizure two years ago from my 'head med' was quite enough, thank you.

Maybe I am just too tired.  The neighborhood dogs were busy a lot this past week. I finally went in to the law enforcement center one morning and told a very nice deputy, that I couldn't do this anymore; couldn't go on and on without sleep because some people let their dogs bark and bark and bark. Just so you know, I am biting my tongue here. All kinds of cruel and nasty epithets come to mind along with the very real desire I had one night to load the shotgun, walk over to those dogs and blow the fuckers away. Anything, if I could just get some sleep. I now understand the effectiveness of sleep deprivation as a torture technique. The deputy was attentive, offered some support and a plan and I didn't break down but I wanted to. And the local animal control person has been helping too.  The past two nights have been more quiet but I think the owners are just trying to placate us in the short term. At five this morning one of the dogs barked but only for a very little while: not long enough for a willing deputy to find the offender. Another dog barked too but he sounded like he was in a garage. Ah, there's no end to the sneakiness out there. Still, we do have improvement and a good chance for continuing this trend.

Tired, what else? I still have things on my mind. Karen and I are going to sit down and compare our respective lists. Maybe we will take Susan's suggestion and try to get a work day organized.  I have a difficult time with that. I do not like asking for help though I can't really say why. I do know that often, just talking helps me air out whatever is bothering me. Today speaking hasn't been working too well. Journaling helped and I guess, venting on the blog is working; sort of. That is, I hope this is working. I guess I may be taking your indulgence for granted. I need to tell you this is difficult for me.  Being able to be honest enough to say these things is kind of scary in its' own right. People have said they appreciate the honesty Karen and I are bringing to this blog. I hope I haven't overdone the honesty bit today.

Earlier this afternoon I gave in to Karen's repeated suggestion and took one of my pain meds for my headache. I really didn't think it would improve my situation but I do feel slightly better. At least, I can smile a bit now.  Yesterday I found myself whistling for no other reason than I felt good and today... ? I don't get it and I may never really understand what goes on in my head or why. But I do know I feel better and I thank you for listening. Maybe now the tears will come and I can get on with having a better day.

Thanks to all of you for your support and prayers and thoughts. Thanks to Karen, too. Without her, I wouldn't be here.
Peace and love,
Mike

Whaddya do?

I don't know where to start; nothing is terribly wrong. It's just that I feel this ...general malais?

I can tell that days are getting shorter. I am one of those people affected by light, or lack of it and every autumn I feel the beginning of the downhill slide into darkness. Less daylight often feels like less time and I still struggle with the 'things' that should get done. And there is less time to do these things, before surgery. And then there is the question of surgery and the ostomy and somehow I never find the time to go online and do the research. Avoidance? Yeah, guilty; along with not getting my advance care directives and medical power of attorney and making sure I have a living will, and, and ...

Why does this happen? I kind of want to blame it on the weather. I mean, what with hot summer days in September and glass waters begging to be paddled, who wouldn't want to avoid those 'unfun' chores? Who wouldn't want to just sit and soak up the sunshine? But using the nice weather is just a poor excuse for laziness, for procrastination, for letting fear run part of my life.  My mind wants to play "what if?" with all the things that could go wrong in the next several weeks. So, I went for a walk today at lunchtime. I moved my feet in the sunshine and fresh air and came back feeling more energized and a bit more relaxed.

This state I am in right now is a work in progress and I probably really won't know why I feel a bit lost for a while.  This is the way things work, or don't work, for me.  Little by little, situations, and things, pile up; tears held back turn into tension headaches. I can't put my finger on the reason I don't feel right and eventually Karen and I end up on our couch while I ramble about 'all these things'. Sometimes it works, and sometimes I get to do it all over again till I find the cause. It is frustrating for both of us. Karen has the patience of a saint.

Peace,
Mike

Sisters

That's my sister Linda up there and that is where she would follow me to. Same goes for me. There isn't anything I wouldn't do for her. So, today, when I mentioned that my sister was flying back early from a vacation in Hawaii to be with me when Mike had surgery and another woman, whom I just met said, "Not me. You'd be on you own." I was appalled.

I'm trying not to judge. And I'm trying not to take it personally. I've learned in the past four months that people will say really dumb things and it's not about me. It really bugs me though and I can't imagine why she'd even say it.

I knew Linda had a trip to Hawaii planned for October and when I found out the date of Mike's surgery I didn't want to tell her. I wanted her to have this trip because I knew how excited she was about it. I put off telling her hoping there would be tickets that couldn't get changed so she'd go. But, she is relentless when she wants information and I suck at lying so I told her. I also told her I wanted her to go and that I could find someone who would sit with me while Mike was in surgery. What followed was a lecture on family importance and sisterhood and when it was all said and done she was going to be there for me and that was that. Amazing, I never asked her to give this up for me....she just did. Why? Cuz she's my sister and that's what sisters do.

I am still overwhelmed by her love, dedication and unselfishness. I am very glad she is going to be there with me and I am VERY glad she is my sister. And I have other sisters not related by blood but related by their sisterly deeds. I have a new sister whom I barely know ask to be there on Mike's surgery day and when I said ok she said "Good, I was coming even if you said no." I had sisters take care of me two years ago when Mike had a seizure. I've drank beer, killed chickens, put up fence for and chased horses with a sister. I have inherited sisters whom I love dearly. I have older sisters and little sisters and I love them all. 

My sisters are good people with one common trait. Unselfishness. I learn a lot from these women and I admire them all. My blood sister the most. 

This cancer journey has been one learning experience after another.Today I learned another lesson from this woman, I learned exactly what I have in all of you and I am so lucky for it.

I hope I am a sister to all of you and if I haven't had the chance to....I hope it comes soon.

I'm going out to the prayer tipi to tie a rag on in thanks of all of you.

Peace,

Karen

Behind the Camera

My big bro-in-law was wondering why there aren't many pictures of me on the blog. The answer is simple. I'm usually the one behind the camera!

There are a few times when Mike does actually get to run the shutter and fewer times still that I allow him to take a picture. I'm posting one picture from this past weekend that I did let him take when we were canoeing on the river with friends.

If any of you who are following the blog wish to see more photos (some with me in them even) you'll have to go to: http://picasaweb.google.com/karisa61

Peace,

The not so photogenic

Karen

Otter Obsession

Otter Obsession I

(desire)

this has become my ritual

to go to the water

looking for otters

driving to the river bridges

staring into black winter water

scanning frozen banks for one brief glimpse

of that thick muscled sleeve darting in the current

~Karen Forbes

It's true. It's an obsession. This is the first of five poems I have in the Otter Obsession series. Over the next few days I'll be adding a sixth because today in the bright light of the late morning the river gave us the otters you see in the picture. Right in front of our canoe and if you ask me where I'll just say, you know, the river.

Peace and otters,

Karen

Happy UnLabor Day

The garden looks tired this morning. Looks like it needs a vacation from all the blooming and growing. Long, fat cucumbers speckled with dew dangle from their vines. A few squash push one last bloom into the morning. I should be, should have been, plucking the flowers these last few weeks to get the already formed fruit to set, but the bees seemed so happy to have them I couldn't do it. What is a few unripe squash to me anyhow?

The potato plants have called it a day and are browning up. The beans have thankfully slowed down. They have provided abundantly. Not so with the tomatoes. They've done their best with what they had and given us a few small candy-like fruits but not much more. Green orbs which will never make it to red hang from tired spindly limbs. Thanks for the effort.

I'm feeling like the garden today. It's been a long difficult summer and I need a break from blooming and growing. Mike and I have a three day weekend and the time together is what we need. No big plans. Paddling, dinner and fishing with friends. Sleeping in. Just time. And that is what I need. Time...not stuff...time.

This weekend will be a nice break for both of us and we hope for all of you too - all of you who we know and who we don't, all of you who have touched us and who we've unknowingly touched. Thanks for being here with us and have a happy Labor Day or as in our case an UNlabor Day.

Peace,
Karen