Back in July I told Mike that I would shave my head in solidarity if the effects of chemo were to make his hair fall out. I even had friends willing to shave for the cause. While Mike appreciated the gesture he made it clear that he preferred I keep my locks. Instead of taking a razor to my scalp I, instead, disavowed the clipping shears. Since July my bangs have been the only part of my hair to see the scissors and only on a rare occasion.
Today, Mike has his chemo pump pulled for the last time. He's done outstandingly well. Only half a day of work has been taken off due to treatment. His blood work has been very good up until this last treatment where his platelets were down. He's gained weight instead of losing, the steriods have given him a moon face, he's been tired, had a rash on his back off and on, a dry mouth, a few leg cramps and the occasionally he's had this "urpy" sensation but nothing terribly severe AND he's kept every hair on his head. Beginning today we should see an increase of his symptoms and then a slow progressive decline. He should begin to feel better.
My hair has grown down past my shoulders in the length of time is has taken to walk this portage. At 10 am I will be sitting in Annie's chair directing a hair cut. I don't think I will return to the short hair I had at the start of all this. I'll have her take "a little off the top" and call it good. It's my intention to have my stubby little braids sticking out from under my head rag while we paddle some big ass lake under endless blue skies up in BFE Canukistan. It's who I am. It's who Mike and Karen are. Freaking bush-hippies with the desire to put miles between us and the nearest civilized hamlet. And we are so ready to shed civilization.
As Mike has already said, "Thanks to all of you who have followed us on this journey." We've been asked if this blog will come to a close. The answer is HELL NO! While this trip is coming to a close there will be other trips to come. More pleasurable journeys and we will try to take you along on those.
So stay tuned. We'll be back. Same Bat time. Same Bat channel.
Peace,
Karen
Thursday, February 25, 2010
Tuesday, February 23, 2010
It is OK to cheer now
In a few hours I will be hooked up for my last chemo. Did you hear me? I SAID, MY LAST CHEMO!!!!
Out freaking standing! It is ok to cheer now and smell the breeze coming off the water and dream of setting down the pack that has been cutting into your shoulders for the past 8 1/2 months. It is time now to dream of a future without side effects. It is time to move on and leave the world of cancer behind and begin to live our normal lives all over again. I know some aspects of our life together will be different because Karen and I will choose to live life with more passion and more purpose. Hopefully with less drama and BS. We will still have some medical stuff to do; follow-up checks that will involve blood work and PET scans to find baselines for monitoring Lynch Syndrome but we will be done with the day-to-day world of chemo and cancer and we are SO glad and thankful.
I want to take this moment before I head off to work to thank all of you: family and friends and unknown blog readers, for your support and prayers and wishes for good health. I know I am better because of your efforts. Thank you.
Peace and love to you all,
Mike
Out freaking standing! It is ok to cheer now and smell the breeze coming off the water and dream of setting down the pack that has been cutting into your shoulders for the past 8 1/2 months. It is time now to dream of a future without side effects. It is time to move on and leave the world of cancer behind and begin to live our normal lives all over again. I know some aspects of our life together will be different because Karen and I will choose to live life with more passion and more purpose. Hopefully with less drama and BS. We will still have some medical stuff to do; follow-up checks that will involve blood work and PET scans to find baselines for monitoring Lynch Syndrome but we will be done with the day-to-day world of chemo and cancer and we are SO glad and thankful.
I want to take this moment before I head off to work to thank all of you: family and friends and unknown blog readers, for your support and prayers and wishes for good health. I know I am better because of your efforts. Thank you.
Peace and love to you all,
Mike
Monday, February 15, 2010
First things first
That's the way it is today. It takes all my concentration to stay on task, to do the first thing and then the next thing. I am in the exhausted part of my chemo cycle and I am glad it is a government holiday because I would be pretty worthless at work.
Karen is on her way to the airport to pick up her sister, Linda, who will be with us for about a week. Linda is fun and easy to have around. She was a big help back when I had surgery. This time she should just be able to hang out. Karen and I spent the morning picking up the house, getting it clean for Linda, and ourselves too. Funny how things can get away from you. All those little moments that we let pass pile up eventually until we have to devote a whole morning, putting things in order again. This is usually a bigger chore for me; I tend to put things down and get back to them later, sometimes.
Besides being so completely tired, I am also running on empty. All I want to do is lay around, nap and eat. I even embarrass myself with my appetite. Seems that my hunger is never far away on days like this but Karen reminds me I am healing and my body is fighting to stay healthy against the chemo treatments and that I should not feel bad for eating. So I nod my head and shovel another mouthful into my gaping maw.
We spent part of yesterday with our friend, Trish, out snowshoeing by the river. We headed down to what Karen and I call "the buzzard hole". Last autumn we spent an hour or so there, watching turkey vultures work the air currents above the river, sliding upwind before peeling away and down to do it again. Since then it has become one of our favorite spots on the river and I intend to prove to Karen that yes, one can catch a trout there.
The short trek down to the hole just about did me in. It has been an awfully long time since I worked that hard while wearing a pair of snowshoes. I broke trail on the way in and still sank about a foot with each step. I was glad to set the pack down on the bank above the open water and just catch my breath. We made tea and had cookies and crackers and cheese and salami and life was good. Until my bag leaked. Then it was time to go. I have to make myself get good info on how to manage the damn thing so this doesn't happen anymore. For a few minutes I despaired of ever enjoying the things in life that I love without having the bag seal fail. I cannot for the life of me conceive of me without paddling or hiking or ... and this bag is the thing I have to come to terms with or life could be ugly for the boy. On days like yesterday and even a few minutes ago, I sometimes have great difficulty not resenting the presence of my ostomy: I just wish it wasn't there.
Small flakes of snow are dancing in the air. The wind sings in the chimes and blows like smoke across our open yard. I am content to be inside today, trying to get better, trying to pay attention, trying to do one thing at a time.
Peace and love,
Mike
Karen is on her way to the airport to pick up her sister, Linda, who will be with us for about a week. Linda is fun and easy to have around. She was a big help back when I had surgery. This time she should just be able to hang out. Karen and I spent the morning picking up the house, getting it clean for Linda, and ourselves too. Funny how things can get away from you. All those little moments that we let pass pile up eventually until we have to devote a whole morning, putting things in order again. This is usually a bigger chore for me; I tend to put things down and get back to them later, sometimes.
Besides being so completely tired, I am also running on empty. All I want to do is lay around, nap and eat. I even embarrass myself with my appetite. Seems that my hunger is never far away on days like this but Karen reminds me I am healing and my body is fighting to stay healthy against the chemo treatments and that I should not feel bad for eating. So I nod my head and shovel another mouthful into my gaping maw.
We spent part of yesterday with our friend, Trish, out snowshoeing by the river. We headed down to what Karen and I call "the buzzard hole". Last autumn we spent an hour or so there, watching turkey vultures work the air currents above the river, sliding upwind before peeling away and down to do it again. Since then it has become one of our favorite spots on the river and I intend to prove to Karen that yes, one can catch a trout there.
The short trek down to the hole just about did me in. It has been an awfully long time since I worked that hard while wearing a pair of snowshoes. I broke trail on the way in and still sank about a foot with each step. I was glad to set the pack down on the bank above the open water and just catch my breath. We made tea and had cookies and crackers and cheese and salami and life was good. Until my bag leaked. Then it was time to go. I have to make myself get good info on how to manage the damn thing so this doesn't happen anymore. For a few minutes I despaired of ever enjoying the things in life that I love without having the bag seal fail. I cannot for the life of me conceive of me without paddling or hiking or ... and this bag is the thing I have to come to terms with or life could be ugly for the boy. On days like yesterday and even a few minutes ago, I sometimes have great difficulty not resenting the presence of my ostomy: I just wish it wasn't there.
Small flakes of snow are dancing in the air. The wind sings in the chimes and blows like smoke across our open yard. I am content to be inside today, trying to get better, trying to pay attention, trying to do one thing at a time.
Peace and love,
Mike
Wednesday, February 10, 2010
Almost There...
Sometimes the last portage of the day is the longest portage. This can be true in fact though it is more often it is the longest because it is the last one of the day and you won't have to pick up the canoe and food pack again till you reach your camp for the night. Your arms and legs were already tired before you left the lake behind and all you knew was that the map showed a very long portage ahead. As good as they can be the maps never show the downed trees you scrape over or not-quite-down trees that you have to scramble under, or the slippery log walkways across sucking bogs, complete with knee-twisting boulders thrown in for fun. The maps never talk about sweat and ache and the bugs that travel with you, swirling around your head. The maps assume you know these things all too well.
Portages are a head game, as much as a physical trial, and at some point you find you are looking ahead for the end. You sense that it should be near and you shift the weight of the canoe from your right shoulder to your left as you tell yourself to hang on a bit longer, just a bit longer.You have already gone up and down the 'last ridge' three times and still you haven't caught a glimpse of blue shimmering through the birches, still haven't felt that breath of cool air wafting up from the lake below and now the portage is hard and you want to quit but there is nowhere to quit to, and with the end so very near, why not keep on?
You are so busy in your head, trying to hang on, that when the lake does become visible and the cool breeze caresses your sweaty brow you can scarcely believe the end is near. The pack and canoe don't magically become lighter but you square your shoulders and shake your load back into place. In a few moments you will heave the canoe off your burning shoulders onto the water with a heavy splat! because you are too tired to flip it up and off with grace. The pack will slide heavily into the canoe, nearly taking you with it and at last you will be able to stand upright. With the sudden loss of weight you feel floaty as you stand at the water's edge, catching your breath. Naturally your eyes gaze out over the water. There is still a camp to be made and a short paddle to get there, but, you are almost there...
Chemo number 7 is almost under our belt. Well, it rides in the fanny pack on my belt as I type this. Only one more treatment to go and then we can make camp and start to get our life back. I am having a hard time this morning. I woke an hour ago, at 4:30 with a headache from tears held back for too long. I found myself thinking of friends and family, doctors and nurses that have gotten me, gotten Karen and I this far, and the tears just came. In spite of knowing better, I even caught myself beginning to plan the celebration we hope to have this summer.
I got up when I became worried that my sobs and shaking would wake Karen and came out to the kitchen to post this blog. She will probably be a bit upset I didn't wake her so she could hold me and listen but... She needs her sleep. The space behind my eyes still aches, the tears are still there. They will be for quite some time. After all we are closer to the end. I can almost feel the breeze coming off the water...
Peace,
Mike
Portages are a head game, as much as a physical trial, and at some point you find you are looking ahead for the end. You sense that it should be near and you shift the weight of the canoe from your right shoulder to your left as you tell yourself to hang on a bit longer, just a bit longer.You have already gone up and down the 'last ridge' three times and still you haven't caught a glimpse of blue shimmering through the birches, still haven't felt that breath of cool air wafting up from the lake below and now the portage is hard and you want to quit but there is nowhere to quit to, and with the end so very near, why not keep on?
You are so busy in your head, trying to hang on, that when the lake does become visible and the cool breeze caresses your sweaty brow you can scarcely believe the end is near. The pack and canoe don't magically become lighter but you square your shoulders and shake your load back into place. In a few moments you will heave the canoe off your burning shoulders onto the water with a heavy splat! because you are too tired to flip it up and off with grace. The pack will slide heavily into the canoe, nearly taking you with it and at last you will be able to stand upright. With the sudden loss of weight you feel floaty as you stand at the water's edge, catching your breath. Naturally your eyes gaze out over the water. There is still a camp to be made and a short paddle to get there, but, you are almost there...
Chemo number 7 is almost under our belt. Well, it rides in the fanny pack on my belt as I type this. Only one more treatment to go and then we can make camp and start to get our life back. I am having a hard time this morning. I woke an hour ago, at 4:30 with a headache from tears held back for too long. I found myself thinking of friends and family, doctors and nurses that have gotten me, gotten Karen and I this far, and the tears just came. In spite of knowing better, I even caught myself beginning to plan the celebration we hope to have this summer.
I got up when I became worried that my sobs and shaking would wake Karen and came out to the kitchen to post this blog. She will probably be a bit upset I didn't wake her so she could hold me and listen but... She needs her sleep. The space behind my eyes still aches, the tears are still there. They will be for quite some time. After all we are closer to the end. I can almost feel the breeze coming off the water...
Peace,
Mike
Monday, February 8, 2010
Sensitive Skin
On Friday we went to Fargo to meet with Mike's new oncologist.
We arrived with time enough for a bit of shopping and lunch. Our first stop was Zandbros. A cool little shop which is half bookstore, part hard to find toy store, one of a kind jewelry, kitchen ware and most importantly skin care. This is the only place I've ever been able to find AHAVA, the skin lotion and soap I use.
In Minnesota winter wreaks havoc on a persons skin. Cold outdoor temps and dry indoor heat causes the old epidermis to stand up in scales and itch. Lines and cracks form. Your face begins to look like the National Geographic pictures you've seen of Death Valley. You flake so bad you have to sweep your bed in the morning and carry a dust pan full of yourself to the garbage. Your skin becomes sensitive.
My skin isn't the only sensitive skin in our house. Mike has sensitive skin too. He applies Bert's Bees Hand Salve to the tips of his thumbs to prevent them from developing deep painful cracks. There is this acne type eruption on his back that comes and goes with chemo. It's the 5 FU says Dr Gross and there is nothing to really put on it to make it go away. It will resolve when the chemo is done. Then there is the general overall skin sensitivity he has had since October. His skin isn't as thick as it used to be. Things that wouldn't bother him in the past now rub him in all the wrong ways. What do you put on that?
AHAVA!
In Hebrew ahava means love. So, I'll just slather Mike in some ahava and keep applying it liberally until he feels better. I know I feel better after a little ahava. Who doesn't?
Peace and Ahava
Karen
Sunday, February 7, 2010
What's All the BrewHaHa?
BrewHaHa is also a tongue in cheek reference to the brouhaha we have gone through with oncologists of late. Friday we journeyed to Fargo to me with Dr. Gross, the oncologist who will be overseeing what is left of my chemo treatments; and maybe the follow-up as well. We learned more from him in a few minutes than we learned from Dr. S., in the past six months.
First of all, Dr. Gross read my file. He told me I could be considered "cured" because of the great response we got from the chemo/radiation that I went through this past summer. "Cured". That has a damn fine ring to it. Between the treatments and my surgery I am cured.
When we touched on side effects, especially the acne-like skin problems he said, "Oh yeah, that's the 5 FU". What? I always felt that my chemo was the cause because I didn't have the bad skin till chemo started but Dr. Gross said that was the cause. Dr. S. just wanted to refer me to a dermatologist.
We addressed the lack of my libido(what a word) and Dr. Gross said the chemo I am getting lowers my testosterone. That goes a long way to explaining things to us and gives us reassurance and hope that when I am done with chemo and this stuff clears my system, I will be returning to my old self. I should get more energy, regain muscle mass and chase Karen around all the time.
Another interesting thing Dr. Gross told us is that apparently Dr. S has a history of not doing well when his authority is challenged. Dr. S has "fired" patients who buck him. I am glad we beat him to the punch and got rid of him first. Karen and I will probably be sending Roger Maris and Meritcare a letter detailing our experience and questioning the ability of Dr. S. to treat chronically ill patients effectively with his attitude, lack of compassion, and hubris, (I like that word).
We left our LONG visit with Dr. Gross feeling uplifted, hopeful and a need by both of us to shed some tears of relief. Instead we went to Nicole's and had fine desserts and a small glass of port to celebrate the good news.
That's the short version of the brouhaha, that will go well from now on. And the other brewhaha? Maybe you'll have to drop by and find out for yourselves.
Peace and love from Whiskey Jack Flats, where the snow is falling.
Mike
Tuesday, February 2, 2010
Ouch!
At work yesterday I ran into a fellow who asked how I was. "Ok" I said, "how are you?"
"Well, I'm not wearing a bag so I must be doing all right."
OUCH!!
This guy wasn't trying to be a smartass, or insensitive; he was just being jovial. I get that and I get that perhaps I am a bit too sensitive myself when it comes to certain matters relating to cancer or ostomies. But still, I was hurt a bit and still am or I wouldn't be writing about it now. What do you do?
I guess it is the personal and intimate nature of my condition that gets to me and makes me more sensitive to comments like the one I heard yesterday. Unless you are an ostomate, or the parent of s kid in diapers, you just don't have the same type of in-your-face relationship with bodily functions.
"Lucy, let me 'splain you dis" The part of my life I am talking about isn't pretty, or fun, or particularly funny. I am having a difficult time, mentally, making peace with having to deal with my ostomy once or twice in the middle of the night, as well as several times during the day. I do not like having a soft, potentially disastrous bulge on my abdomen, restricting my movements. Roll a small pillow up and stick it in your pants and then try tying your boots. And I do not like having to 'assume the position' by a toilet so I can empty my bag, again, and flush the bag with water, hoping I do not get splashed or make too big a mess in the process. Believe me, there are times I really miss the convenience of pooping like 'other' people; (I won't call you normal).
I am thankful to be alive and I am trying to make adjustments to the physical and mental requirements of my condition. I guess I just want acknowledgement that hey, it isn't all pretty or fun and sometimes you are going to say something stupid or I am going to be a bit too sensitive, but, there is a reason why and we both need to be aware of the reason and why it was hurtful.
I am sure that wearing a bag isn't the worst thing in life but I also know I have heard enough well meaning, yet inconsiderate comments, to last me for a long time. I know I have made my share and probably will still make a grievous faux-pas, at times. The point is, use your head and think before you make that innocent jest because unless you are that person, with their particular experience, you may be treading on sensitive ground and become the unwitting focal point for anger or resentment that has been built by others. And that wouldn't be good.
I think that today I am going shopping for a few cartons of instant pudding. It's time for my 'friend' to have a bag of his own.
Peace and love,
Mike
"Well, I'm not wearing a bag so I must be doing all right."
OUCH!!
This guy wasn't trying to be a smartass, or insensitive; he was just being jovial. I get that and I get that perhaps I am a bit too sensitive myself when it comes to certain matters relating to cancer or ostomies. But still, I was hurt a bit and still am or I wouldn't be writing about it now. What do you do?
I guess it is the personal and intimate nature of my condition that gets to me and makes me more sensitive to comments like the one I heard yesterday. Unless you are an ostomate, or the parent of s kid in diapers, you just don't have the same type of in-your-face relationship with bodily functions.
"Lucy, let me 'splain you dis" The part of my life I am talking about isn't pretty, or fun, or particularly funny. I am having a difficult time, mentally, making peace with having to deal with my ostomy once or twice in the middle of the night, as well as several times during the day. I do not like having a soft, potentially disastrous bulge on my abdomen, restricting my movements. Roll a small pillow up and stick it in your pants and then try tying your boots. And I do not like having to 'assume the position' by a toilet so I can empty my bag, again, and flush the bag with water, hoping I do not get splashed or make too big a mess in the process. Believe me, there are times I really miss the convenience of pooping like 'other' people; (I won't call you normal).
I am thankful to be alive and I am trying to make adjustments to the physical and mental requirements of my condition. I guess I just want acknowledgement that hey, it isn't all pretty or fun and sometimes you are going to say something stupid or I am going to be a bit too sensitive, but, there is a reason why and we both need to be aware of the reason and why it was hurtful.
I am sure that wearing a bag isn't the worst thing in life but I also know I have heard enough well meaning, yet inconsiderate comments, to last me for a long time. I know I have made my share and probably will still make a grievous faux-pas, at times. The point is, use your head and think before you make that innocent jest because unless you are that person, with their particular experience, you may be treading on sensitive ground and become the unwitting focal point for anger or resentment that has been built by others. And that wouldn't be good.
I think that today I am going shopping for a few cartons of instant pudding. It's time for my 'friend' to have a bag of his own.
Peace and love,
Mike
Monday, February 1, 2010
Bare Skin
When I was a young boy one of my greatest bedtime pleasures came when my mom used to tickle me. Not the best way to get a kid calmed down for bedtime but I loved it when she asked "Where's the bare skin?" before she started tickling my ribs. I was too young to know she was talking about naked skin. I always thought she was talking about real bear skin but my enjoyment was genuine.
Karen and I are both sensual people; ie., we both love the feel of each others' skin. We try as much as possible to make sure there is nothing between us at bedtime, but skin. But real bare skin is more of a rarity at our house these days. My ostomy restricts the amount of skin and the time available for us to share that skin. So when Karen read my morning note saying maybe we could have bare belly time tonight, she almost cried.
The shower is where we find bare skin these days. Like lots of things in life, timing is everything and sometimes I have the timing right. Tonight wasn't really one of those times. Bare skin comes about by removing my bag and hoping my ostomy doesn't decide to poop but we weren't that lucky.
For a moment put aside your squeamishness or inhibitions and try to imagine what you would do to get something you really want and need from your loved one. Would you risk taking a shower when you know their belly might poop at any moment? Would you accept that chance to get your bare skin time? Wouldn't you be willing to share these moments that are both intimate and embarrassing, to preserve one of the pleasures you used to take for granted?
We cannot change my ostomy; we can only change how we deal with it. If we let my ostomy limit every aspect of my life, of our life together, what do we have? We try to limit the intrusions and we do have many things we still have to learn how to manage in our day to day living, but we do have choices. And our choice is to live as normal a life as possible. So we put up with a pooping belly as the occasional price we pay to continue sharing one of our greatest intimacies. Wouldn't you?
Peace and love to our friends and family,
Mike
Karen and I are both sensual people; ie., we both love the feel of each others' skin. We try as much as possible to make sure there is nothing between us at bedtime, but skin. But real bare skin is more of a rarity at our house these days. My ostomy restricts the amount of skin and the time available for us to share that skin. So when Karen read my morning note saying maybe we could have bare belly time tonight, she almost cried.
The shower is where we find bare skin these days. Like lots of things in life, timing is everything and sometimes I have the timing right. Tonight wasn't really one of those times. Bare skin comes about by removing my bag and hoping my ostomy doesn't decide to poop but we weren't that lucky.
For a moment put aside your squeamishness or inhibitions and try to imagine what you would do to get something you really want and need from your loved one. Would you risk taking a shower when you know their belly might poop at any moment? Would you accept that chance to get your bare skin time? Wouldn't you be willing to share these moments that are both intimate and embarrassing, to preserve one of the pleasures you used to take for granted?
We cannot change my ostomy; we can only change how we deal with it. If we let my ostomy limit every aspect of my life, of our life together, what do we have? We try to limit the intrusions and we do have many things we still have to learn how to manage in our day to day living, but we do have choices. And our choice is to live as normal a life as possible. So we put up with a pooping belly as the occasional price we pay to continue sharing one of our greatest intimacies. Wouldn't you?
Peace and love to our friends and family,
Mike
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