New news...we have more forward progress.
Mike has an appointment with a Medical Oncologist on July 6. Granted it's in Fargo, but we'll take that! Dr Shahidi will run the chemo part of the treatment along with Dr Bollenger, Radiation Oncologist (appointment on July 10) and it can be done here in little old Bemidji!
Today, I can't say enough about two nurses at MeritCare - Natalie and Heidi. They did in a matter of hours what has taken the University of MN weeks to do; they got us an appointment.
Now don't get me wrong. It's not that we are ungrateful for what the U has done. It's just the time frame. We begin week 7 of Mike and Karen's Big Cancer Adventure tomorrow and it hasn't exactly been smooth paddling and mostly the map has been broke. Finding someone who knows where we are and who can send us in the right direction with a guide is huge.
So, next Monday it's another road trip. This time "not that far." (Gerch, that was for you!) We are looking forward to getting started with radiation and chemo and stopping the progress of Mike's cancer...remember, for later use, that I did say that and in writing.
We are also looking forward to going to Fargo. Well, at least I am. Going to Fargo means going to Nicole's Fine Pastry, www.nicholesfinepastry.com, which is not fine as the name would say but AMAZING! Great coffee, excellent pastry and sandwiches and these delicate little white chocolates with passion fruit filling that melt in your mouth and are on par with great sex. And if you like Napoleons...this is your place! It is always on our stop list when we visit Fargo. I am really looking forward to this!
So, here's another SO... So, instead of wrapping this piece up nice and neat I'm just gonna leave you a bit of good news and thoughts of passion fruit candy dancing in your head....mmmmmmm! And maybe, just maybe, I'll bring you some back!
Peace
Karen
Monday, June 29, 2009
Saturday, June 27, 2009
Ripples in the pond...
This is a great day for napping. Cool, with gusty winds blowing the humidity from the air and pulling more storms into view on the weather radar. Really, it is quite a feat for me to get the computer from Karen when weather is approaching. She is a weather radar junkie.
The washing machine is still not working so after we came back from doing laundry I put bread together and we took a nap. Seems like I am tired more than I used to be. This week was especially tiring. I had already wound myself up with anger at not hearing the results of my prostate biopsy so that when the results came back negative for cancer I was relieved but incapable of joy. That made our lives, well... not interesting. Karen and I are finding out that we are going to be getting better at communication and venting without consequences attached.
Being honest is so essential. If we are self-censoring for fear of hurting each others' feelings I am afraid we will find ourselves in separate corners of a dark room, waiting the other to bring in the light. I think this depth of honesty will become a skill we get better at with practice. As Karen said a few weeks ago, life is all about practice.
Two good things came this week. After my prostate came back clean I was free to get the treatment process started. In the absence of clear leadership from the medical community, I assumed the role of bus driver and started the next round of phone calls to get appointments for radiation and chemo. This is so frustrating. Monday will be the beginning of the seventh week since my cancer was discovered. I do have an appointment here in Bemidji, with the radiation oncologist on the 10th of July. I am still trying to get a referral for the medical oncologist and will try calling Katie on Monday to see if Madoff can shake something loose. At the rate the treatment is progressing I may be getting surgery in November. At least I will have more PTO banked by then.
The really good thing that happened is that I am becoming more and more aware of the community of friends and family gathering around Karen and I. We have become the pebble dropped into the still waters of the pond. The ripples circle out, growing and growing as they move farther away from the center. Longtime friends, John and Sue Tibstra came by the other night to see how we were. We had a few beers and a lot of laughs and we were all better for the time spent together. They put together a CD of John Prine songs and gave it to me. We had it playing last night in Ruby. Karen said it is the first time she heard me sing a whole CD. What a treat to hear Prine! I suspect there are some people out there who were in my YCC crews years ago, that still remember the chorus to "Flag Decal" because I sung it so much while we were cutting brush and killing horseflies.
We listened to Prine as we drove to Gerchy's house. Jon and Trish invited us out for a fish fry. Jon makes the best deep fried fish, period. Jon is our 'Uncle Jon' and we enjoyed a symbiotic relationship when we lived in the tipi. He took care of us and we tried to take care of him. Karen and I could not ask for better friends.
I sat by Jon while he was cooking and listened as he told me that if there was anything we needed, we should just let them know. I have such a hard time asking for help. Some of that is pride, some of that is because I have often and still do, feel like a loner. I guess I have always been kind of on the fringe and never in the center of anything. To know how much I am, we are, loved by our friends and family, is one of those times when tears just well up. And after a week of such ups and downs, my emotional resistance is so thin it is all I can do not to be all tears and snot. I will have to learn to ask people like Jon, to listen while I vent my fears and angers and hopefully, share my joys. I am not sure how to do this; to find and trust friends and be honest: to be part of a bigger community. Loners like me have few close friends and spend too much time in our own heads because we are sure we are misfits, or crazy or broken.
I felt broken the other night. I hate that feeling but wrap myself up in it because old habits die hard. This week I am learning my life doesn't have to be that way anymore. Karen has spent so much time telling me that over the years and now, friends are telling me too. I can't say thank you, enough.
The bread just came out of the oven. I thank Karen every time my bread turns out. I am always surprised at the little miracle of fresh bread. And today I am touched and honored by the larger miracle of a loving community of support. Thank you, thank you, thank you.
Peace,
Mike
The washing machine is still not working so after we came back from doing laundry I put bread together and we took a nap. Seems like I am tired more than I used to be. This week was especially tiring. I had already wound myself up with anger at not hearing the results of my prostate biopsy so that when the results came back negative for cancer I was relieved but incapable of joy. That made our lives, well... not interesting. Karen and I are finding out that we are going to be getting better at communication and venting without consequences attached.
Being honest is so essential. If we are self-censoring for fear of hurting each others' feelings I am afraid we will find ourselves in separate corners of a dark room, waiting the other to bring in the light. I think this depth of honesty will become a skill we get better at with practice. As Karen said a few weeks ago, life is all about practice.
Two good things came this week. After my prostate came back clean I was free to get the treatment process started. In the absence of clear leadership from the medical community, I assumed the role of bus driver and started the next round of phone calls to get appointments for radiation and chemo. This is so frustrating. Monday will be the beginning of the seventh week since my cancer was discovered. I do have an appointment here in Bemidji, with the radiation oncologist on the 10th of July. I am still trying to get a referral for the medical oncologist and will try calling Katie on Monday to see if Madoff can shake something loose. At the rate the treatment is progressing I may be getting surgery in November. At least I will have more PTO banked by then.
The really good thing that happened is that I am becoming more and more aware of the community of friends and family gathering around Karen and I. We have become the pebble dropped into the still waters of the pond. The ripples circle out, growing and growing as they move farther away from the center. Longtime friends, John and Sue Tibstra came by the other night to see how we were. We had a few beers and a lot of laughs and we were all better for the time spent together. They put together a CD of John Prine songs and gave it to me. We had it playing last night in Ruby. Karen said it is the first time she heard me sing a whole CD. What a treat to hear Prine! I suspect there are some people out there who were in my YCC crews years ago, that still remember the chorus to "Flag Decal" because I sung it so much while we were cutting brush and killing horseflies.
We listened to Prine as we drove to Gerchy's house. Jon and Trish invited us out for a fish fry. Jon makes the best deep fried fish, period. Jon is our 'Uncle Jon' and we enjoyed a symbiotic relationship when we lived in the tipi. He took care of us and we tried to take care of him. Karen and I could not ask for better friends.
I sat by Jon while he was cooking and listened as he told me that if there was anything we needed, we should just let them know. I have such a hard time asking for help. Some of that is pride, some of that is because I have often and still do, feel like a loner. I guess I have always been kind of on the fringe and never in the center of anything. To know how much I am, we are, loved by our friends and family, is one of those times when tears just well up. And after a week of such ups and downs, my emotional resistance is so thin it is all I can do not to be all tears and snot. I will have to learn to ask people like Jon, to listen while I vent my fears and angers and hopefully, share my joys. I am not sure how to do this; to find and trust friends and be honest: to be part of a bigger community. Loners like me have few close friends and spend too much time in our own heads because we are sure we are misfits, or crazy or broken.
I felt broken the other night. I hate that feeling but wrap myself up in it because old habits die hard. This week I am learning my life doesn't have to be that way anymore. Karen has spent so much time telling me that over the years and now, friends are telling me too. I can't say thank you, enough.
The bread just came out of the oven. I thank Karen every time my bread turns out. I am always surprised at the little miracle of fresh bread. And today I am touched and honored by the larger miracle of a loving community of support. Thank you, thank you, thank you.
Peace,
Mike
Wednesday, June 24, 2009
A Layover day
"There are only two prayers you really ever need." says one of my favorite authors Anne Lamott. "Help me! Help me! Help me! And, thank you! Thank you! Thank you!" Today, I am saying "Thank you! Thank you! Thank you!"
There was good news yesterday. Finally, some good news. Now, I"m not foolish enough to think there won't be more difficulties ahead, I know there is going to be more tough portaging. I get that. But today feels like a layover day on a long canoe trip. A respite day. A day where the packs have been put down and won't have to be carried. A day where I can take a little inventory; see where we are on this trip, see how much food we have, get a little laundry done (not literally because my machine is still belly up). I get a chance to sit down with the map and look over the topography and try to get a feel for this new land. It's the kinda day I look forward to after about 5 days of travel.
I know that tomorrow I'm going to have to pick up and carry my pack again. I know it will be a little easier because it's going to be a little lighter and I'm going to be a little stronger but, today I'm going to "lay around on a slab of granite and soak up the warmth. Eat a Poptart. Take a nap and I'm going to be grateful for days like these. I'm going to enjoy a reprieve from the badgering wind of bad news AND I'm going to say "Thank you, thank you, thank you!" A LOT!
Peace everyone, Karen
Tuesday, June 23, 2009
The Verdict is in!
I thought about drawing this out and teasing you all but I thought better of it...so I'll just out this news:
NO PROSTATE CANCER WAS DETECTED IN MIKE'S BIOPSY!
Nuff said! It's happy at the Forbes house.
Thanks everyone for your prayer & good thoughts.
Peace
Karen
NO PROSTATE CANCER WAS DETECTED IN MIKE'S BIOPSY!
Nuff said! It's happy at the Forbes house.
Thanks everyone for your prayer & good thoughts.
Peace
Karen
Monday, June 22, 2009
Expecting
Since last Thursday morning I have been actively doing something which I have pretty much quit doing. I am expecting.
I've been trying to be present and expecting takes me out to the future which has not happened yet. Moving into the future takes me out of present and presents a whole new level of stress. I have no ability to accurately forecast the future and so therefore have to guess or as I call it, play the "What IF" game. Now "What If" is a fun game say at Church Councel meetings: What if we change the time of church? What if we use Ritz crackers instead of communion wafers? But in this situation it's not so fun. In this case there is a lot at risk. I can't possibly foresee all the "what ifs". I can't cover all my bases. I can't possibly plan for what I can't concieve. The end result? Frustration, anxiety, sadness, helplessness - violence against self.
We cause a great deal of our own pain with expectation. We also cause a great deal of pain to others because of our own expectations. For instance: I expect you will call me every Tuesday at 9:23 am. On Tuesday you don't call me at all. So, then I'm angry at you. You did not meet MY expectation and I'm mad at YOU? How does that work? I should be mad at me for being unrealistic not you. If I had not expected at all...we'd all be fine.
So, here I am. I'm expecting. Last Thursday I got specific and asked the Universe to give us some good news. I've also asked that Mike's prostate not have cancer and I've asked that radiation can be given here in Bemidji where we have friends and loved ones nearby. And...I'm expecting to get what I asked for.
Setting myself up for disaster? We'll find out I guess. I just figure we can't keep getting bad news. This has got to let up sooner than later. We are five weeks out from Mike's cancer diagnosis now and still no plan. We are waiting on the biopsy results from his prostate (they took 20 samples via needle). The good news was the PSA was normal and I'm expecting more good news to follow.
I expect we will hear this week.
Peace,
Karen
I've been trying to be present and expecting takes me out to the future which has not happened yet. Moving into the future takes me out of present and presents a whole new level of stress. I have no ability to accurately forecast the future and so therefore have to guess or as I call it, play the "What IF" game. Now "What If" is a fun game say at Church Councel meetings: What if we change the time of church? What if we use Ritz crackers instead of communion wafers? But in this situation it's not so fun. In this case there is a lot at risk. I can't possibly foresee all the "what ifs". I can't cover all my bases. I can't possibly plan for what I can't concieve. The end result? Frustration, anxiety, sadness, helplessness - violence against self.
We cause a great deal of our own pain with expectation. We also cause a great deal of pain to others because of our own expectations. For instance: I expect you will call me every Tuesday at 9:23 am. On Tuesday you don't call me at all. So, then I'm angry at you. You did not meet MY expectation and I'm mad at YOU? How does that work? I should be mad at me for being unrealistic not you. If I had not expected at all...we'd all be fine.
So, here I am. I'm expecting. Last Thursday I got specific and asked the Universe to give us some good news. I've also asked that Mike's prostate not have cancer and I've asked that radiation can be given here in Bemidji where we have friends and loved ones nearby. And...I'm expecting to get what I asked for.
Setting myself up for disaster? We'll find out I guess. I just figure we can't keep getting bad news. This has got to let up sooner than later. We are five weeks out from Mike's cancer diagnosis now and still no plan. We are waiting on the biopsy results from his prostate (they took 20 samples via needle). The good news was the PSA was normal and I'm expecting more good news to follow.
I expect we will hear this week.
Peace,
Karen
Sunday, June 21, 2009
Communion
Tut, tut it looks like rain.
This morning is cool and quiet. Just a hint of breeze. Blue clouds rim the horizon and suggest rain later. Another cup of coffee or so and I'll head out to the gardens; play with my plant buddies. Mike's at work for a few hours and while I'm waiting as fast as I can for him to come home I'll do some weeding, tilling and mulching. Garden therapy.
I played in the garden a little last night. I hesitate to call it working in the garden because it's more fun than work. I love the feel of the dirt in my hand and under my feet - I spend a lot of time in the garden without shoes on. I get a kick out of planting seeds and then waiting for the little plant babies to poke out of the soil. I am in awe and wonder each time this happens. The excitement wells up inside of me makes me giggle and I can't wait to tell Mike what new thing is growing in the garden.
I like the newness of each day with the garden for, like the river, you never step into the same garden twice. Each day brings new plants, new leaves,new fruit, new flowers and occasionally some new challenges: weeds, blight, bugs, critters. But you gotta take the bad with the good and there are more good days than not in the garden and more joy than frustration. It's life.
After dinner last evening I went to the garden. The sun was warm; not hot as it had been earlier. I left my gloves in the garage and my shoes at the gate. I wanted nothing between me and the earth but skin. I weeded; replanted some carrots and beets, scratched in some additional cilantro and basil (you can't have enough basil) and planted a few more flower seeds. Most of the time, however was spent with my hands on my hips surveying all I've grown.
Out in the yard our dogs were running around like idiots, chasing after the possibility of rodents in the woodpile. Humming birds were zooming back and forth from the feeders. Dragon flies were coasting on warm gold sunlight. Through the open windows of the house I could hear northern Minnesota playing Green Cheese on KAXE (for those of you not familiar KAXE is our local community radio station and Green Cheese is a call in trivia show that is played from 7-9 each Saturday. www.kaxe.org) and I could hear Mike's giggle as he pulled two perfect loaves of bread from the oven.
Mike learned how to make bread about a year ago when we decided to quit buying "not good for you", yucky store bread. Now we take turns making bread; each of us with our own favorite recipe. Mine is a maple oatmeal bread. His is a cottage cheese bread which always turns out tall and light with a delightful, chewy crust. While I'm the one who taught him to make bread it's a case of the student surpassing the instructor. He's more patient I think.
Mike's bread is better than mine and I think I discovered why last night: it's the giggle factor. He's like a little kid with the bread. He gets such delight from every aspect of the process and it builds up inside of him until the crowning moment when it comes out of the oven hot and golden and smelling of home. The oven door comes open and out comes this lovely, warm, deep....giggle. My bread comes out with an air of smugness but Mike's comes out with wonder, joy and "that" giggle. It never gets old.
So, as the dew started to settle, I finished up in the garden, fed the rabbits, threw the squirrel for the dogs and took my dirty hands and feet into the house. I cleaned up a little, sat down at the counter and let Mike slice a piece of warm bread for me. As I spread butter across my slice I thought, "this is what breaking bread is all about, this is true communion." I closed my eyes, bit down into the sweet, warm taste of love and home and I giggled.
Peace
Karen
This morning is cool and quiet. Just a hint of breeze. Blue clouds rim the horizon and suggest rain later. Another cup of coffee or so and I'll head out to the gardens; play with my plant buddies. Mike's at work for a few hours and while I'm waiting as fast as I can for him to come home I'll do some weeding, tilling and mulching. Garden therapy.
I played in the garden a little last night. I hesitate to call it working in the garden because it's more fun than work. I love the feel of the dirt in my hand and under my feet - I spend a lot of time in the garden without shoes on. I get a kick out of planting seeds and then waiting for the little plant babies to poke out of the soil. I am in awe and wonder each time this happens. The excitement wells up inside of me makes me giggle and I can't wait to tell Mike what new thing is growing in the garden.
I like the newness of each day with the garden for, like the river, you never step into the same garden twice. Each day brings new plants, new leaves,new fruit, new flowers and occasionally some new challenges: weeds, blight, bugs, critters. But you gotta take the bad with the good and there are more good days than not in the garden and more joy than frustration. It's life.
After dinner last evening I went to the garden. The sun was warm; not hot as it had been earlier. I left my gloves in the garage and my shoes at the gate. I wanted nothing between me and the earth but skin. I weeded; replanted some carrots and beets, scratched in some additional cilantro and basil (you can't have enough basil) and planted a few more flower seeds. Most of the time, however was spent with my hands on my hips surveying all I've grown.
Out in the yard our dogs were running around like idiots, chasing after the possibility of rodents in the woodpile. Humming birds were zooming back and forth from the feeders. Dragon flies were coasting on warm gold sunlight. Through the open windows of the house I could hear northern Minnesota playing Green Cheese on KAXE (for those of you not familiar KAXE is our local community radio station and Green Cheese is a call in trivia show that is played from 7-9 each Saturday. www.kaxe.org) and I could hear Mike's giggle as he pulled two perfect loaves of bread from the oven.
Mike learned how to make bread about a year ago when we decided to quit buying "not good for you", yucky store bread. Now we take turns making bread; each of us with our own favorite recipe. Mine is a maple oatmeal bread. His is a cottage cheese bread which always turns out tall and light with a delightful, chewy crust. While I'm the one who taught him to make bread it's a case of the student surpassing the instructor. He's more patient I think.
Mike's bread is better than mine and I think I discovered why last night: it's the giggle factor. He's like a little kid with the bread. He gets such delight from every aspect of the process and it builds up inside of him until the crowning moment when it comes out of the oven hot and golden and smelling of home. The oven door comes open and out comes this lovely, warm, deep....giggle. My bread comes out with an air of smugness but Mike's comes out with wonder, joy and "that" giggle. It never gets old.
So, as the dew started to settle, I finished up in the garden, fed the rabbits, threw the squirrel for the dogs and took my dirty hands and feet into the house. I cleaned up a little, sat down at the counter and let Mike slice a piece of warm bread for me. As I spread butter across my slice I thought, "this is what breaking bread is all about, this is true communion." I closed my eyes, bit down into the sweet, warm taste of love and home and I giggled.
Peace
Karen
Friday, June 19, 2009
Closed on Sundays
Just a quick note to let everyone know that we are closed on Sundays. Karen and I have elected to pick one day in the week where we do not have to actively deal with my cancer and the effects on our lives. It is not as though we won't be thinking of this new life we have been given. Rather we have chosen to take the day off and take care of ourselves and let everything else fall by the wayside for just one day. So if you stop by or call on Sundays, please understand we are 'off duty' and will be willing to talk about cancer some other day.
We are telling people that we have three jobs; each of us goes to work to earn money. We have all the work tied to taking care of the house and bills and lawnwork and critters and garden, etc. And we have this new full-time job of dealing with cancer. This last job costs us a great deal but like an investment, we are looking for great gains in the end.
Sometimes we find ourselves reminding friends and family to use the blog to keep up with what is happening. This is important. We will not always have the time, energy or inclination to answer every phone call or email to explain what is happening. Read the blog. We are dedicating what time and energy we have left at the end of the days, to updating the blog.
Remember; Sundays we are closed and read the damn blog.
Peace. Really I mean it.
Mike
We are telling people that we have three jobs; each of us goes to work to earn money. We have all the work tied to taking care of the house and bills and lawnwork and critters and garden, etc. And we have this new full-time job of dealing with cancer. This last job costs us a great deal but like an investment, we are looking for great gains in the end.
Sometimes we find ourselves reminding friends and family to use the blog to keep up with what is happening. This is important. We will not always have the time, energy or inclination to answer every phone call or email to explain what is happening. Read the blog. We are dedicating what time and energy we have left at the end of the days, to updating the blog.
Remember; Sundays we are closed and read the damn blog.
Peace. Really I mean it.
Mike
Chickadees
O no, not another bird blog!
I listen to KAXE alot and there is a segment called "Speaking for the Birds" by Laura Erickson, a well known birder. One of my favorite stories of hers has to deal with chickadees and their ability to grow new neurons in their brains. Each fall, chickadees get these new neurons to help them remember where they have been caching food. Come the next autumn and the 'old' memory cells with locations of 'old' food caches are replaced with new memory capability; they only remember what they need to remember to survive. Pretty neat, huh?
Karen and I cannot grow new memory cells, and speaking for myself, I know my mind is overly cluttered with bits of mostly useless detritus and arcane knowledge of limited value. We are, I am, limited by my ability to learn and remember new things. Karen and I are getting better at navi-guessing our way to the U of M-Fairview. This is good but I hope someday I do not need to remember how to get there.
I am re-learning lessons from 1991 and 1992 because my memory failed me: how to be pro-active and speak up for myself in dealing with medical people, the absolute necessity to keep track of all paperwork related to treatments, diagnoses, expenses, insurance. Karen has been a great help here, especially in keeping us organized and in asking the correct questions. And of course, we did learn something new this week; never head out of town without bags packed with necessities for an overnight stay.
I am reminded of what my friend Denny LaCroix says "It cost money to go to school." And this week we did have an expensive lesson. We went to school on taking people at their word and the sometimes faulty communication that exists in large medical institutions. An unexpected night in the hotel, another day of PTO, another day without pay for Karen; it all adds up. It is only money. I know that but none of it was necessary and in very kind words, I let Fairview know that this afternoon.
Today we are recouperating from the past two days. The emotional ups and downs, the lack of sleep, the long days of waiting and then the drive home late at night; all these take a toll on us. We are thankful for being able to call up our bosses and say we won't be at work tomorrow. And we are thankful for being able to call family and ask them to take care of the dogs and rabbits on short notice. And I am thankful for Karen. She has made me her priority and sticks by my side through thick and thin. Or as it was yesterday, through wince and grimace.
Now we just wait. Prostate biopsy reports should be available next week and the results will probably set our course for the next few months. Thanks for all the support, prayers and good wishes. Keep the good vibes coming.
Peace to you all,
Mike
I listen to KAXE alot and there is a segment called "Speaking for the Birds" by Laura Erickson, a well known birder. One of my favorite stories of hers has to deal with chickadees and their ability to grow new neurons in their brains. Each fall, chickadees get these new neurons to help them remember where they have been caching food. Come the next autumn and the 'old' memory cells with locations of 'old' food caches are replaced with new memory capability; they only remember what they need to remember to survive. Pretty neat, huh?
Karen and I cannot grow new memory cells, and speaking for myself, I know my mind is overly cluttered with bits of mostly useless detritus and arcane knowledge of limited value. We are, I am, limited by my ability to learn and remember new things. Karen and I are getting better at navi-guessing our way to the U of M-Fairview. This is good but I hope someday I do not need to remember how to get there.
I am re-learning lessons from 1991 and 1992 because my memory failed me: how to be pro-active and speak up for myself in dealing with medical people, the absolute necessity to keep track of all paperwork related to treatments, diagnoses, expenses, insurance. Karen has been a great help here, especially in keeping us organized and in asking the correct questions. And of course, we did learn something new this week; never head out of town without bags packed with necessities for an overnight stay.
I am reminded of what my friend Denny LaCroix says "It cost money to go to school." And this week we did have an expensive lesson. We went to school on taking people at their word and the sometimes faulty communication that exists in large medical institutions. An unexpected night in the hotel, another day of PTO, another day without pay for Karen; it all adds up. It is only money. I know that but none of it was necessary and in very kind words, I let Fairview know that this afternoon.
Today we are recouperating from the past two days. The emotional ups and downs, the lack of sleep, the long days of waiting and then the drive home late at night; all these take a toll on us. We are thankful for being able to call up our bosses and say we won't be at work tomorrow. And we are thankful for being able to call family and ask them to take care of the dogs and rabbits on short notice. And I am thankful for Karen. She has made me her priority and sticks by my side through thick and thin. Or as it was yesterday, through wince and grimace.
Now we just wait. Prostate biopsy reports should be available next week and the results will probably set our course for the next few months. Thanks for all the support, prayers and good wishes. Keep the good vibes coming.
Peace to you all,
Mike
The Cast of Whiskey Jack Flats
I'm going to break up all the new info into several posts over the next few days because...there is a lot of new and potentially new info. Mike will also ad his special twist to the blog so stay tuned.
What I thought I'd do is introduce you to our ever growing cast of medical characters in order of which they appear. Here goes:
THE DOCTORS (with major roles)
(bit actors with non-recurring roles such as Dr Malgren aka Swedish Chef, will not be listed.)
Dr Sebastain Mangiamele - our little Italian family doctor from Brooklyn who is a martial arts fanatic and is a boxing Dr in his spare time. I know the Mangiamele family because our sons are friends and their daughter took riding lessons from me. Dr M started the ball rolling on this gig.
Dr Benjamin Roy - general surgeon, did the colonoscopy on Mike and found the cancer. Dr Roy is our liaison between Minneapolis and Bemidji and our "shake it up, shake it loose, shake it down" guy. Grand Rapids boy. Normal down to earth kinda man. Shoots straight from the hip and knows his limits.
Dr Behanin Sahin - Pronounced Shine, medical oncologist Masonic Cancer Center, University of Minnesota Medical Center. Dr Sahin was the first doc we saw in the Cities and also the wrong doc for what we initially needed. Dr Sahin got us an appointment with Dr Madoff by pulling strings. I understand Mike will probably get sent back to him for chemo plans. Serious kinda guy who gets things done.
Dr Robert Madoff - Colon and Rectal Surgeon Chief at the Masonic Cancer Center at the University of Minnesota AKA by everyone we've talked to down there as GOD. Madoff is our boat driver and will do the surgery on Mike. Relaxed, confident guy. Straightforward. Very likable. Seems the staff like him too.
Dr Adolfson - Radiation Oncologist Intern at the University Medical Center, Minneapolis. Intern of Dr Margaret Reynolds. Intern in charge of staging Mike's radiation. Competent, kind, patient and empathetic with a sense of humor.
Dr Margaret Reynolds - Radiation Oncology, University Medical Center, Minneapolis. Dr Adolfson's mentor. Compassionate, direct and together with Dr Adolfson very chatty. We didn't spend much time with her.
Dr Kenneth Koeneman - Urology at the Center for Prostate Cancer. Fast talking, quasi mulleted 40ish doctor who is an aggressive risk taker. Get things done. Dr Koeneman did Mike's prostate biopsy and will be advising Dr Madoff and Drs Adolfson and Reynolds in regards to treatment plan if the biopsy comes back positive.
There will also be a genetic counselor to appear in later episodes. And we are just going to keep you in suspense on that one! So stay tuned! New cast members are introduced weekly.
I know you are thinking GEE WIZARDS! Yeah, us too. Dr Adolfson, my favorite so far, said it best when he said, "I know this looks a lot like a Chinese Fire Drill, but, pretty quick now everything will line up. Everyone will be on the bus and there will be a driver."
So, until then...woooo, whoooooo, wooooooooooooooooooooooooooooooooooooo
Peace out people,
Karen
What I thought I'd do is introduce you to our ever growing cast of medical characters in order of which they appear. Here goes:
THE DOCTORS (with major roles)
(bit actors with non-recurring roles such as Dr Malgren aka Swedish Chef, will not be listed.)
Dr Sebastain Mangiamele - our little Italian family doctor from Brooklyn who is a martial arts fanatic and is a boxing Dr in his spare time. I know the Mangiamele family because our sons are friends and their daughter took riding lessons from me. Dr M started the ball rolling on this gig.
Dr Benjamin Roy - general surgeon, did the colonoscopy on Mike and found the cancer. Dr Roy is our liaison between Minneapolis and Bemidji and our "shake it up, shake it loose, shake it down" guy. Grand Rapids boy. Normal down to earth kinda man. Shoots straight from the hip and knows his limits.
Dr Behanin Sahin - Pronounced Shine, medical oncologist Masonic Cancer Center, University of Minnesota Medical Center. Dr Sahin was the first doc we saw in the Cities and also the wrong doc for what we initially needed. Dr Sahin got us an appointment with Dr Madoff by pulling strings. I understand Mike will probably get sent back to him for chemo plans. Serious kinda guy who gets things done.
Dr Robert Madoff - Colon and Rectal Surgeon Chief at the Masonic Cancer Center at the University of Minnesota AKA by everyone we've talked to down there as GOD. Madoff is our boat driver and will do the surgery on Mike. Relaxed, confident guy. Straightforward. Very likable. Seems the staff like him too.
Dr Adolfson - Radiation Oncologist Intern at the University Medical Center, Minneapolis. Intern of Dr Margaret Reynolds. Intern in charge of staging Mike's radiation. Competent, kind, patient and empathetic with a sense of humor.
Dr Margaret Reynolds - Radiation Oncology, University Medical Center, Minneapolis. Dr Adolfson's mentor. Compassionate, direct and together with Dr Adolfson very chatty. We didn't spend much time with her.
Dr Kenneth Koeneman - Urology at the Center for Prostate Cancer. Fast talking, quasi mulleted 40ish doctor who is an aggressive risk taker. Get things done. Dr Koeneman did Mike's prostate biopsy and will be advising Dr Madoff and Drs Adolfson and Reynolds in regards to treatment plan if the biopsy comes back positive.
There will also be a genetic counselor to appear in later episodes. And we are just going to keep you in suspense on that one! So stay tuned! New cast members are introduced weekly.
I know you are thinking GEE WIZARDS! Yeah, us too. Dr Adolfson, my favorite so far, said it best when he said, "I know this looks a lot like a Chinese Fire Drill, but, pretty quick now everything will line up. Everyone will be on the bus and there will be a driver."
So, until then...woooo, whoooooo, wooooooooooooooooooooooooooooooooooooo
Peace out people,
Karen
Thursday, June 18, 2009
One tiny bit of good news
Ok, I said it and I meant it and we got some good news today...Mikes blood test for prostate cancer was within normal limits. The doctor took 20 little biopsies of his prostate and put a rush on the results. We should know those at the beginning of the week.
There is of course more to tell and that will happen tomorrow but I wanted to let you know we got a little good news and we'll take that!
Becca....there was a PT dpt on the floor where the urologist was. There was a big board in the hallway with all the pictures of the physical therapists on it...all except for one...who simply had a stick figure drawing of herself!
Peace,
Karen
There is of course more to tell and that will happen tomorrow but I wanted to let you know we got a little good news and we'll take that!
Becca....there was a PT dpt on the floor where the urologist was. There was a big board in the hallway with all the pictures of the physical therapists on it...all except for one...who simply had a stick figure drawing of herself!
Peace,
Karen
Changing the Stars
Today, we are going to get some good news. We, I , need some good news and I have decided we are going to get it today. The universe can't just keep dealing us bad junk. We can't keep going to see doctors and getting more complications it's gotta stop some time and and today is that day.
So, here is what we are going to hear: there is no cancer in Mike's prostate and we can proceed with radiation and chemo in Bemidji.
It's just that easy...right?
I mean, a man can change his stars.
Peace,
Karen
So, here is what we are going to hear: there is no cancer in Mike's prostate and we can proceed with radiation and chemo in Bemidji.
It's just that easy...right?
I mean, a man can change his stars.
Peace,
Karen
Wednesday, June 17, 2009
Pockets...
If I am wearing something with pockets; pants or shorts or whatever, you can be sure I have these three things or I am underdressed: a pocketknife, a bandanna and some type of lip balm. I feel ready for most of what life will throw at me as long as these things are in my pockets. I guess it is a kind of carryover from my old Boy Scout days; "Be Prepared" and all that. Some people take this 'being prepared' to greater extremes but really, how much junk does one actually need to carry with them at any one time? How goddamn prepared do you need to be anyway? How much freakin' disastrophe will you have to deal with in one day?
Too much, today: that's the answer. Karen and I are camped out in the Radisson again. The room is nice enough. The problem is we did not expect to have to stay tonight so I did not put things like toothbrush, clean clothes, Karen's meds, charger for the cell phone, razor, deodorant, etc, etc, in my pockets when I got dressed this morning. We did not put enough hope and patience in our pockets before we left home at 5:30 this morning so by the time we saw the radiation oncologist, our pockets were already empty.
I believe that the amount of hope and patience and confidence we need could not have been carried in any pockets we have, or in any number of pockets. There just aren't enough of them and they just ain't big enough.
Tomorrow we have a 2:00 appointment with an urologist to get opinions about the state of my prostate. I may get to have a prostate biopsy. This is because the MRI suggests possible involvement (cancer) in my prostate and that would change the treatment plan, especially when it comes to radition therapy.
We are hoping for a 'clean' biopsy from the prostate. That is the best case scenario. If the prostate is involved the radiation is more complicated and could mean I would have to stay in the Cities for the duration of the radiation treatment. And that of course, will raise hell with PTO and money and taking care of things at home etc, etc. There are more details involved but I am not taking time to go there now because it is 11:10. So for those of you that just have to know, you will just have to wait.
Karen and I are kind of back in the beginning stages again and that sucks little green donkey dicks: anger, fear, frustration, tears, questions, questions, questions and not one useful answer. O so good to be back on familiar ground.
Sleep well friends. Check your pockets. Apparently there are some things one should not leave home without.
Peace, Mike
Too much, today: that's the answer. Karen and I are camped out in the Radisson again. The room is nice enough. The problem is we did not expect to have to stay tonight so I did not put things like toothbrush, clean clothes, Karen's meds, charger for the cell phone, razor, deodorant, etc, etc, in my pockets when I got dressed this morning. We did not put enough hope and patience in our pockets before we left home at 5:30 this morning so by the time we saw the radiation oncologist, our pockets were already empty.
I believe that the amount of hope and patience and confidence we need could not have been carried in any pockets we have, or in any number of pockets. There just aren't enough of them and they just ain't big enough.
Tomorrow we have a 2:00 appointment with an urologist to get opinions about the state of my prostate. I may get to have a prostate biopsy. This is because the MRI suggests possible involvement (cancer) in my prostate and that would change the treatment plan, especially when it comes to radition therapy.
We are hoping for a 'clean' biopsy from the prostate. That is the best case scenario. If the prostate is involved the radiation is more complicated and could mean I would have to stay in the Cities for the duration of the radiation treatment. And that of course, will raise hell with PTO and money and taking care of things at home etc, etc. There are more details involved but I am not taking time to go there now because it is 11:10. So for those of you that just have to know, you will just have to wait.
Karen and I are kind of back in the beginning stages again and that sucks little green donkey dicks: anger, fear, frustration, tears, questions, questions, questions and not one useful answer. O so good to be back on familiar ground.
Sleep well friends. Check your pockets. Apparently there are some things one should not leave home without.
Peace, Mike
Tuesday, June 16, 2009
I can change. If I have to. I guess
It's been a month since Mike was diagnosed with rectal cancer. As my sister so aptly put it, "Your journey with cancer was thrust upon you without your permission and is a journey you never ever wanted to take. There is no doubt that this journey will forever change you and Mike...but is also changing the lives of all those who love you in ways you may never know."
For weeks now I've been whining about how I want my "real" life back; the life before cancer changed everything. I've been digging my heels in, clawing for some crack or crevasse where I could wedge a finger and stop the free fall. I've been swimming for dear life not realizing that all I had to do was stand up.
It's true, some things in our lives have changed and still there is more change to come. Some change is planned and some isn't. Some change we want, some, well not so much. Change is inevitable. Everything changes all the time (how's that for dealing absolutes!) the only real variable is the speed at which things change. It's like....hmmmm...what? It's like driving in snow at night. If you have your brights on it looks like it's a blizzard, dim the lights and it's not so bad, look out the side window and well...it's just flurries. It's perception. It all depends on how you look at it.
Oh holy rambling metaphor!
Ok, so what I'm saying here is this: Not everything has changed for us, for me, there is still a great deal of sameness. And while I've been focusing on what has changed I've failed to notice how much still remains the same. There's grass to mow, gardens to tend, meals to fix, a house to clean, laundry to fold and jobs to work. There are quilts to be sewn, knitting to knit, birds to watch and fish to catch, or as the case was the other night, NOT. There are still rivers to paddle, dogs to throw balls for, sunsets to watch, coffee to drink, chocolates to eat and mornings in bed.
There's all this normal stuff I've lost focus of! (ohhh...she ends in a preposition!) A bunch of my "real life" has been sitting here all along and I've been looking so hard at change I've completely overlooked it. I'm an idiot!
So, tomorrow we head to the Cities (for those of you who are not familiar with this term, this is what we call Minneapolis/St Paul here in Minnesota) for an appointment with Dr Madoff and then an appointment with a radiation oncologist and MORE change. Some forward movement. Change we've been waiting for. We've had a month now to live with cancer and I'm beginning to accept this change or at least I think I'm getting there. Well at least today I say this, tomorrow that might change...
I know there are a lot of you out there (I don't really know how many) who are reading along; who are brave enough to follow us on this journey. Some of you are changing as a result of what you read here. Some of you are reassessing your lives and making positive changes because of what you read here, because of what we write here, and this just blows my mind. We just wanted a place to keep everyone up to date on what is going on it never occurred to me that we might change anything or anybody. Holy crap!
So, I've got some attitude that needs adjusting, because after all, accepting change is about changing attitude. I'm hoping to get better at giving into change that is out of my control. I know there are many of you who'll help me out. Many of you already have and may not know it and I thank you.
So I'll leave you with the words of a few famous people who said this about change:
"Things do not change, we change." Henry David Thoreau
"It's a good thing." Martha Stewart
"I'm a guy. I can change. If I have to. I guess" Red Green
Peace everyone!
Karen
For weeks now I've been whining about how I want my "real" life back; the life before cancer changed everything. I've been digging my heels in, clawing for some crack or crevasse where I could wedge a finger and stop the free fall. I've been swimming for dear life not realizing that all I had to do was stand up.
It's true, some things in our lives have changed and still there is more change to come. Some change is planned and some isn't. Some change we want, some, well not so much. Change is inevitable. Everything changes all the time (how's that for dealing absolutes!) the only real variable is the speed at which things change. It's like....hmmmm...what? It's like driving in snow at night. If you have your brights on it looks like it's a blizzard, dim the lights and it's not so bad, look out the side window and well...it's just flurries. It's perception. It all depends on how you look at it.
Oh holy rambling metaphor!
Ok, so what I'm saying here is this: Not everything has changed for us, for me, there is still a great deal of sameness. And while I've been focusing on what has changed I've failed to notice how much still remains the same. There's grass to mow, gardens to tend, meals to fix, a house to clean, laundry to fold and jobs to work. There are quilts to be sewn, knitting to knit, birds to watch and fish to catch, or as the case was the other night, NOT. There are still rivers to paddle, dogs to throw balls for, sunsets to watch, coffee to drink, chocolates to eat and mornings in bed.
There's all this normal stuff I've lost focus of! (ohhh...she ends in a preposition!) A bunch of my "real life" has been sitting here all along and I've been looking so hard at change I've completely overlooked it. I'm an idiot!
So, tomorrow we head to the Cities (for those of you who are not familiar with this term, this is what we call Minneapolis/St Paul here in Minnesota) for an appointment with Dr Madoff and then an appointment with a radiation oncologist and MORE change. Some forward movement. Change we've been waiting for. We've had a month now to live with cancer and I'm beginning to accept this change or at least I think I'm getting there. Well at least today I say this, tomorrow that might change...
I know there are a lot of you out there (I don't really know how many) who are reading along; who are brave enough to follow us on this journey. Some of you are changing as a result of what you read here. Some of you are reassessing your lives and making positive changes because of what you read here, because of what we write here, and this just blows my mind. We just wanted a place to keep everyone up to date on what is going on it never occurred to me that we might change anything or anybody. Holy crap!
So, I've got some attitude that needs adjusting, because after all, accepting change is about changing attitude. I'm hoping to get better at giving into change that is out of my control. I know there are many of you who'll help me out. Many of you already have and may not know it and I thank you.
So I'll leave you with the words of a few famous people who said this about change:
"Things do not change, we change." Henry David Thoreau
"It's a good thing." Martha Stewart
"I'm a guy. I can change. If I have to. I guess" Red Green
Peace everyone!
Karen
Thursday, June 11, 2009
Einstein's Bluebirds
Years of waking too early so I could be at work at 6 am, have wrecked my ability to sleep late. In that hour before my alarm is set to go off I am easily disturbed by small noises so I am often already half awake before the alarm wakes up. Yesterday morning, while my consciousness was floating slowly to the surface, I heard a soft Pat-Pat, coming from somewhere in our home. There was a pause, then the sound came again, Pat-Pat-pause...Pat-Pat. My mind was already awake so I got up and wobbled out to the living room to see what was making the noise.
I found a male bluebird was trying to repel an intruder in his territory. The intruder was his own reflection, challenging him from our window. The Pat-Pat came from the bluebird hitting the window, bouncing off, then hitting it again before perching on the shepard's crook that holds our hummingbird feeder. The pause was the bird waiting a few moments before leaving the perch to attack the reflection again and again... Pat-Pat... Pat-Pat...
I turned away to put on water for coffee and remembered something Karen told me a long time ago. I may not have the quote correct and Karen may have been paraphrasing anyway, but basically it goes like this: Einstein's definition of insanity is- Doing the same thing over and over again while expecting different results. It is Ok to laugh or give yourself a dope slap if you have been guilty of this in the past. I know I have been 'insane' many times.
This week is a prime example. Not knowing what else to do in an effort to get answers I kept doing the same thing; over and over. Compared to an adult human, a male bluebird has little in the way of reasoning ability. Yet I was no better than that bluebird that kept hitting the window, again and again.
In our situation Karen and I are insulated from the person holding the answers, the power if you will; by distance, by intermediaries, by lack of understanding and poor communication. I much prefer face to face for important issues and fighting this cancer is an important issue. So I am already at a disadvantage trying to communicate my frustration over the phone. I cannot talk to the doctor but I can talk to Katie and I am sure she understands my words and I am also sure she feels the frustration in my voice and I am sure she means well and wants, genuinely, to help, but... Maybe there is only so much she can do. That is hard to accept sometimes; very hard.
So I call her in the morning and wait for her to call back. By the end of the day I haven't heard from her so I call again. And we are, all of us, no closer than we were in the morning so we have to try again, tomorrow. Call and wait, call and wait, call and wait. My frustration mounts and my patience wears thin and finally by Tuesday evening I had enough. I wanted to kick something or someone. I wanted to scream and growl and yell and rage. I complained loudly, in clear terms, to Katie and later to Emily, Dr. Roy's nurse. I wanted answers, or a head on a plate, or a different doctor. I was willing to go to Mayo, or anywhere, if we could just get started.
What did I get for all that; my little tantrum? My stomach hurt almost right away and when I got home I banged my head on the cupboards for a long time because it felt good and I liked the sound. Predictably, later on, I felt a mix of shame and stupidity. I mean, Katie and Emily are doing nothing wrong. I know they are trying their best. And the doctor is not at fault. I have to believe they all chose medicine because they wanted to help people, not fight bureacracy and get their asses chewed out on the phone in the process. Perhaps it is cliche' but the problem is -the system- and who can fight that?
These good people do understand what I say and what my fears are and why I don't want to waste my PTO and money making multiple trips to the Cities, to OZ, if I can do it all in one shot. But they can only effect change in small ways. At least this is what I choose to believe. Somehow we have all become pawns in a game that has no clear strategy, no fun outcome, even if you do get the answers to your questions.
Mick Jaeger said it "We don't always get what we want, but if we try, sometimes, we get what we need." That's where we are now. The doctor called yesterday and I got to ask at least the most pressing questions and we got answers. We got what we needed, for now. Next week we will make a run down and back to meet with him and the radiation oncologist and possibly we will get more of what we want. Getting all of what we want just isn't in the cards, but we have a start. And that is a step forward.
After my talk with Dr. Madoff, I felt relieved, almost elated. I had answers, we had a plan and a direction. That lasted for about 20 minutes. Then I crashed. The anger fell away, leaving me exhausted, with a stinging headache, a headful of tears hiding behind my eyes. This is why I do not like anger. It takes so much out of me and usually all the ranting, the raving, do nothing to help change the situation. Things change because people change them. Anger is a choice and for a while I gave up and let anger be my choice. Insane people will do that occasionally.
This morning the Pat-Pat was missing. Maybe the bluebird chose to try something else for a change. If so, I like to think Einstein smiled a little. And I hope that someday, when he's done laughing at me, I will give him a reason to smile too.
As always, Peace to you all.
Mike
I found a male bluebird was trying to repel an intruder in his territory. The intruder was his own reflection, challenging him from our window. The Pat-Pat came from the bluebird hitting the window, bouncing off, then hitting it again before perching on the shepard's crook that holds our hummingbird feeder. The pause was the bird waiting a few moments before leaving the perch to attack the reflection again and again... Pat-Pat... Pat-Pat...
I turned away to put on water for coffee and remembered something Karen told me a long time ago. I may not have the quote correct and Karen may have been paraphrasing anyway, but basically it goes like this: Einstein's definition of insanity is- Doing the same thing over and over again while expecting different results. It is Ok to laugh or give yourself a dope slap if you have been guilty of this in the past. I know I have been 'insane' many times.
This week is a prime example. Not knowing what else to do in an effort to get answers I kept doing the same thing; over and over. Compared to an adult human, a male bluebird has little in the way of reasoning ability. Yet I was no better than that bluebird that kept hitting the window, again and again.
In our situation Karen and I are insulated from the person holding the answers, the power if you will; by distance, by intermediaries, by lack of understanding and poor communication. I much prefer face to face for important issues and fighting this cancer is an important issue. So I am already at a disadvantage trying to communicate my frustration over the phone. I cannot talk to the doctor but I can talk to Katie and I am sure she understands my words and I am also sure she feels the frustration in my voice and I am sure she means well and wants, genuinely, to help, but... Maybe there is only so much she can do. That is hard to accept sometimes; very hard.
So I call her in the morning and wait for her to call back. By the end of the day I haven't heard from her so I call again. And we are, all of us, no closer than we were in the morning so we have to try again, tomorrow. Call and wait, call and wait, call and wait. My frustration mounts and my patience wears thin and finally by Tuesday evening I had enough. I wanted to kick something or someone. I wanted to scream and growl and yell and rage. I complained loudly, in clear terms, to Katie and later to Emily, Dr. Roy's nurse. I wanted answers, or a head on a plate, or a different doctor. I was willing to go to Mayo, or anywhere, if we could just get started.
What did I get for all that; my little tantrum? My stomach hurt almost right away and when I got home I banged my head on the cupboards for a long time because it felt good and I liked the sound. Predictably, later on, I felt a mix of shame and stupidity. I mean, Katie and Emily are doing nothing wrong. I know they are trying their best. And the doctor is not at fault. I have to believe they all chose medicine because they wanted to help people, not fight bureacracy and get their asses chewed out on the phone in the process. Perhaps it is cliche' but the problem is -the system- and who can fight that?
These good people do understand what I say and what my fears are and why I don't want to waste my PTO and money making multiple trips to the Cities, to OZ, if I can do it all in one shot. But they can only effect change in small ways. At least this is what I choose to believe. Somehow we have all become pawns in a game that has no clear strategy, no fun outcome, even if you do get the answers to your questions.
Mick Jaeger said it "We don't always get what we want, but if we try, sometimes, we get what we need." That's where we are now. The doctor called yesterday and I got to ask at least the most pressing questions and we got answers. We got what we needed, for now. Next week we will make a run down and back to meet with him and the radiation oncologist and possibly we will get more of what we want. Getting all of what we want just isn't in the cards, but we have a start. And that is a step forward.
After my talk with Dr. Madoff, I felt relieved, almost elated. I had answers, we had a plan and a direction. That lasted for about 20 minutes. Then I crashed. The anger fell away, leaving me exhausted, with a stinging headache, a headful of tears hiding behind my eyes. This is why I do not like anger. It takes so much out of me and usually all the ranting, the raving, do nothing to help change the situation. Things change because people change them. Anger is a choice and for a while I gave up and let anger be my choice. Insane people will do that occasionally.
This morning the Pat-Pat was missing. Maybe the bluebird chose to try something else for a change. If so, I like to think Einstein smiled a little. And I hope that someday, when he's done laughing at me, I will give him a reason to smile too.
As always, Peace to you all.
Mike
The River
It's a quiet morning both in the physical and mental world. If I had the day off I'd be at the river.
I'd be there fishing or paddling or maybe just sitting with the river listening. Listening for the strength and wisdom that comes in soft trickles and gurgles. Taking in the advice of flow and bend. Learning to go around what I can't go through. I'd be there to heal because every single time whether I need it or not I come away from the river whole, healed and a little bit wiser. The river is my teacher, guide and example. The river reminds me that things change yet remain constant. Or as Heraclitus says, "You can never step into the same river; for new waters are always flowing on to you."
So, where is this river you ask? And I'd have to reply with this:
The River
I could say, “the river”.
I could say,
“I’m going to ‘the river’.”
and you’d never know
which river I’m going to
because
I call them all
“the river”
and I love them all
like the river I love the most:
the one with the otters
and the swans
and the rainbow colored fish
the river below the trestle
and the falls
that thin ribbon in the great wolfed valley
the shallow one with buffalo
and that one river
I love to paddle
fish
and swim in,
you know…
“the river”.
~Karen Forbes
Peace my friends
Karen
*I took the dragonfly picture on the Turtle River.
Wednesday, June 10, 2009
A Quick Update
It's tired out and we are heading to bed soon but wanted to let you all know progress was made today!
Dr Madoff called Mike this morning around 8:30 am. He said that the cancer is a stage 3 cancer, that regardless of what Mike opts for surgically radiation and chemo must happen first. He also wants to do a PSA which is a blood test for Prostate cancer. We have appointments at the U of M next Wednesday to see (and in this order) the lab for tests, Dr Madoff for the plan and then see a radiation oncologist to get set up for radiation.
We are feeling better about this, at least we have forward movement. I don't know who rattled the cage and got this all moving but we are both glad for it.
Now, we are going to go to bed and sleep the sleep of the dead.
Night
Karen
Dr Madoff called Mike this morning around 8:30 am. He said that the cancer is a stage 3 cancer, that regardless of what Mike opts for surgically radiation and chemo must happen first. He also wants to do a PSA which is a blood test for Prostate cancer. We have appointments at the U of M next Wednesday to see (and in this order) the lab for tests, Dr Madoff for the plan and then see a radiation oncologist to get set up for radiation.
We are feeling better about this, at least we have forward movement. I don't know who rattled the cage and got this all moving but we are both glad for it.
Now, we are going to go to bed and sleep the sleep of the dead.
Night
Karen
A Little Rant from the Spousal Unit
Morning boyz & gurls!
I'm back from town and on my second cup of coffee. I took Mike into work after dropping the van off at the shop to get it's Johnson Rod fixed. I'll head back in to work in about an hour.
While the sun is shining out and there is more sky than clouds this morning it's a little dark and dreary at the Forbes household. Mike is very upset, frustrated, and discouraged. He, we, don't seem to be getting any place with the U of M. It's been three weeks and we still don't have a clear plan. In fact at this point we don't have
1) MRI results
2) Final Rectal Ultrasound results (just a sort of verbal from Dr Swedish Chef)
3) Stage of Cancer
4) Any sort of appointment with Dr Madoff
There was some talk two days ago and, apparently, a little yesterday of seeing a Radiology Oncologist and THEN seeing Madoff. This makes no sense to us as we were given options at our first appointment, thought we'd be talking about options after all the tests were done and now it would appear a decision is being made for us. And that's NOT OK. There was also talk of seeing radioloy on Tuesday and the Dr on Wednesday and this was AFTER Mike told Katie (you remember her from yesterday) that we were already going to be in Minneapolis on Monday on a return trip from a wedding and could we possibly do this on Monday?
It appears that Katie has no concept of where Bemidji is (4 hours from Minneapolis) and that work hours and PTO hours must be used for such appointments plus hotel rooms and travel expenses and we don't have unlimited funds for this. It also appears that there is no sense of what all this waiting does to a person. It's enough for a person to find out they have cancer and be devestated by that news, it's hard emotionally, but then to further add to the distress by handling the treatment process in a totally inadequate manner and further add to stress is incomprehensible to me.
Back when I was in nursing school my instructor told us all that 90% of healing occurs in the brain. I belive this. I don't know if they don't teach this anymore, or if the medical profession like so many other professions is being driven by the money factor or what? Some important part is missing.
I understand Mike is not the only one in the world with cancer but tell that to him! To him...he IS the only one with cancer. To me he is the only one with cancer. You can't and shouldn't hand a cancer diagnosis to a person like a cookie to a little kid and then tell them to go play until I call you. That is not OK.
So what do you do? I can't call. All the Privacy Laws in place make that impossible. How do you get the medical community to understand that they are treating people not diseases and with those people come entire communities?
Mike called Emily (Dr Roy's nurse) yesterday who, in turn, talked to Dr Roy, who said, he'd call Madoff. I suspect we will get some answers today, test results I hope, a real plan with real appointments I pray. I believe if we don't have something today we will be looking for an alternative to the U of M.
It should never have had to get to this.
Mike is at work and upset for the day. Feeling a bit impotent I believe. Me? I'm at a loss. I don't know what I can do except be here and be calm for Mike. It's a hard thing this watching. I don't know what I can do for Mike except love him and I do love him, like I've never loved anyone.
Peace,
Karen
I'm back from town and on my second cup of coffee. I took Mike into work after dropping the van off at the shop to get it's Johnson Rod fixed. I'll head back in to work in about an hour.
While the sun is shining out and there is more sky than clouds this morning it's a little dark and dreary at the Forbes household. Mike is very upset, frustrated, and discouraged. He, we, don't seem to be getting any place with the U of M. It's been three weeks and we still don't have a clear plan. In fact at this point we don't have
1) MRI results
2) Final Rectal Ultrasound results (just a sort of verbal from Dr Swedish Chef)
3) Stage of Cancer
4) Any sort of appointment with Dr Madoff
There was some talk two days ago and, apparently, a little yesterday of seeing a Radiology Oncologist and THEN seeing Madoff. This makes no sense to us as we were given options at our first appointment, thought we'd be talking about options after all the tests were done and now it would appear a decision is being made for us. And that's NOT OK. There was also talk of seeing radioloy on Tuesday and the Dr on Wednesday and this was AFTER Mike told Katie (you remember her from yesterday) that we were already going to be in Minneapolis on Monday on a return trip from a wedding and could we possibly do this on Monday?
It appears that Katie has no concept of where Bemidji is (4 hours from Minneapolis) and that work hours and PTO hours must be used for such appointments plus hotel rooms and travel expenses and we don't have unlimited funds for this. It also appears that there is no sense of what all this waiting does to a person. It's enough for a person to find out they have cancer and be devestated by that news, it's hard emotionally, but then to further add to the distress by handling the treatment process in a totally inadequate manner and further add to stress is incomprehensible to me.
Back when I was in nursing school my instructor told us all that 90% of healing occurs in the brain. I belive this. I don't know if they don't teach this anymore, or if the medical profession like so many other professions is being driven by the money factor or what? Some important part is missing.
I understand Mike is not the only one in the world with cancer but tell that to him! To him...he IS the only one with cancer. To me he is the only one with cancer. You can't and shouldn't hand a cancer diagnosis to a person like a cookie to a little kid and then tell them to go play until I call you. That is not OK.
So what do you do? I can't call. All the Privacy Laws in place make that impossible. How do you get the medical community to understand that they are treating people not diseases and with those people come entire communities?
Mike called Emily (Dr Roy's nurse) yesterday who, in turn, talked to Dr Roy, who said, he'd call Madoff. I suspect we will get some answers today, test results I hope, a real plan with real appointments I pray. I believe if we don't have something today we will be looking for an alternative to the U of M.
It should never have had to get to this.
Mike is at work and upset for the day. Feeling a bit impotent I believe. Me? I'm at a loss. I don't know what I can do except be here and be calm for Mike. It's a hard thing this watching. I don't know what I can do for Mike except love him and I do love him, like I've never loved anyone.
Peace,
Karen
Tuesday, June 9, 2009
Today and Tomorrow
Some words to share from my wise sister Linda and Mr Emerson:
Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be encumbered with your old nonsense.
Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be encumbered with your old nonsense.
-- Ralph Waldo Emerson
Monday, June 8, 2009
For those of you who are playing along at home....
Katie is a name you will all want to commit to memory. Katie is our Nurse Coordinator down at the Masonic Cancer Center at the University Medical Center in Minneapolis.
If you want to get to Dr Madoff you get there through Katie. If you want lab results, x-ray reports or an expedited appointment, you get there through Katie. Now I'd like to tell you what she looks like, I met her last week, I think she is my height, blonde and cute, but stress has a way of interfering with an otherwise impeccable mental recall. I can tell you she makes things happen and is a total sweetheart. I think Mike is falling in love with her. He may be able to describe her.
Mike has been on the phone with Katie a lot these past few days and things are starting to move a bit (no intestinal pun intended). I know you are all waiting as fast as you can for what the next step will be. I know you are waiting for new info, I mean besides what birds we've seen or which tree is our new favorite, how many cups of coffee of which kind we are drinking or the ever entertaining meltdown posts. We are waiting too.
Katie is working on our life, on Mike's life and right now that's ok. At least something is happening. She's gonna call him again tomorrow with more detailed info regarding appointments with the Wizard (if you are joining this game already in process you will need to go back to Karen's 5/31/2009 post). It sounds as if we will have appointments next week. We'll give you more when we know more...how's that?
In the meantime, thanks for playing and pay attention. There will be pop quizzes periodically and cheap but fabulous prizes will be awarded. All prize winners will be entered into a sweepstakes (no purchase necessary) to win an amazing prize which will be awarded at our "We Made It" party.
Peace Out
Karen
If you want to get to Dr Madoff you get there through Katie. If you want lab results, x-ray reports or an expedited appointment, you get there through Katie. Now I'd like to tell you what she looks like, I met her last week, I think she is my height, blonde and cute, but stress has a way of interfering with an otherwise impeccable mental recall. I can tell you she makes things happen and is a total sweetheart. I think Mike is falling in love with her. He may be able to describe her.
Mike has been on the phone with Katie a lot these past few days and things are starting to move a bit (no intestinal pun intended). I know you are all waiting as fast as you can for what the next step will be. I know you are waiting for new info, I mean besides what birds we've seen or which tree is our new favorite, how many cups of coffee of which kind we are drinking or the ever entertaining meltdown posts. We are waiting too.
Katie is working on our life, on Mike's life and right now that's ok. At least something is happening. She's gonna call him again tomorrow with more detailed info regarding appointments with the Wizard (if you are joining this game already in process you will need to go back to Karen's 5/31/2009 post). It sounds as if we will have appointments next week. We'll give you more when we know more...how's that?
In the meantime, thanks for playing and pay attention. There will be pop quizzes periodically and cheap but fabulous prizes will be awarded. All prize winners will be entered into a sweepstakes (no purchase necessary) to win an amazing prize which will be awarded at our "We Made It" party.
Peace Out
Karen
Thinking outside the box.
It is interesting that neither one of us placed blame but rather tried to claim it. I hadn't thought of it like that. I haven't blamed Mike for any of this. I'd have to think pretty hard and look back with binoculars to see if I've blamed anything but genetic code for Mike's cancer. Mike can maybe tell you different but I can't think of it right now.
Mostly I'm frustrated with the pace of forward progress, there is forward progress being made, and the fact that there is little I can do at this point. I also find myself occasionally wishing I were STUPID, it's sometimes hard having been in the profession to know so much or too much. Still, my inner-counselor reminds me, there is power in knowledge. Power to the people!
It's pretty cool that my Bro-in-law suggested making a circle in our main living area...my sister suggested the same thing an hour or so ago on the phone. I know exactly where there is a circle and I think I'm going to go get it and bring it into the house. I'm also going to go get the tipi door and bring that in also. On the door are all the handprints of people who are important to us...many of you read this blog. It is a reminder of the strength and love each of you show and continue to show us.
The tipi was good for us and the lessons we learned there carry over. Sometimes we just need to be reminded.
Thanks Mike for reminding me to think outside of the box! I love you bunches.
Karen
"There is no power in a square."
Yesterday Karen and I woke up in different places, mentally, and spent a good part of the morning trying to find our way back. Maybe in the everyday dance of life you find that you and your loved one are not in sync; someone is out of step. If the mental place you woke up in isn't fun, then trying to get back together, trying to find and establish the rhythm of life together, won't be fun either. Somehow, when I should have just listened to what Karen had to say, I went somewhere else and there was no dancing allowed.
No one was really at fault, though we each wanted to claim part of the blame. When we did talk about what went wrong I pointed out that sometimes these things just happen. O the depths of my wisdom. Of course these things happen. We all know that. We don't like it much when they happen in our lives but often we are better off by not giving them too much credence. The thing is, Karen and I didn't have this happen very often when we lived in the tipi and when it did happen, we got back in step, a whole lot sooner.
The title of this blog comes from a quote by Old Lodge Skins, one of the main characters in the novel Little Big Man, by Thomas Berger. An outstanding movie was made from this book but of course, the book is better. When I started to write about our life in the tipi I used this quote but there is a lot of truth in what Old Lodge Skins said.
The tipi we live in now is all straight lines and corners and hallways and rooms. We like our home a great deal, especially in rainy weather and we especially like our main living area because of the openness and the windows which let the outside in as much as windows can. One of the things we are not fond of is that we can get lost in this tipi. There are too many places one can hide if you don't feel like facing a problem, or a loved one, or, I suspect, oneself.
Living together in a circle we had no place to hide. Our thoughts and emotions, our energies, could not get lost in a rats' maze of turns and hallways that always led to a dead end sooner or later. And then you have to find your way back. Karen and I had no place to retreat to, when we felt off. We had to stay in that small circular space and work things out, together. We found out quickly, that was the magic of the circle. Everything we projected went 'round and 'round but never left, never hid and always came back to the center. We still had times when we were 'off' but they didn't last very long. We grew closer and closer because we had to and we had fewer and fewer 'off'' times because of the power of the circle. We look back on our time in the tipi as one of the best things in our life together and we cherish what we learned living there. I guess, for a few hours yesterday, I forgot the lesson. It happens.
Karen and I did talk and did find a rhythm that got us through the rest of the day. I may cover that some other time. I have to get ready for work now. Enjoy your lives, people. Enjoy each other and stay out of corners. Old Lodge Skins is right: There is no power in a square.
Peace to you all.
Mike
No one was really at fault, though we each wanted to claim part of the blame. When we did talk about what went wrong I pointed out that sometimes these things just happen. O the depths of my wisdom. Of course these things happen. We all know that. We don't like it much when they happen in our lives but often we are better off by not giving them too much credence. The thing is, Karen and I didn't have this happen very often when we lived in the tipi and when it did happen, we got back in step, a whole lot sooner.
The title of this blog comes from a quote by Old Lodge Skins, one of the main characters in the novel Little Big Man, by Thomas Berger. An outstanding movie was made from this book but of course, the book is better. When I started to write about our life in the tipi I used this quote but there is a lot of truth in what Old Lodge Skins said.
The tipi we live in now is all straight lines and corners and hallways and rooms. We like our home a great deal, especially in rainy weather and we especially like our main living area because of the openness and the windows which let the outside in as much as windows can. One of the things we are not fond of is that we can get lost in this tipi. There are too many places one can hide if you don't feel like facing a problem, or a loved one, or, I suspect, oneself.
Living together in a circle we had no place to hide. Our thoughts and emotions, our energies, could not get lost in a rats' maze of turns and hallways that always led to a dead end sooner or later. And then you have to find your way back. Karen and I had no place to retreat to, when we felt off. We had to stay in that small circular space and work things out, together. We found out quickly, that was the magic of the circle. Everything we projected went 'round and 'round but never left, never hid and always came back to the center. We still had times when we were 'off' but they didn't last very long. We grew closer and closer because we had to and we had fewer and fewer 'off'' times because of the power of the circle. We look back on our time in the tipi as one of the best things in our life together and we cherish what we learned living there. I guess, for a few hours yesterday, I forgot the lesson. It happens.
Karen and I did talk and did find a rhythm that got us through the rest of the day. I may cover that some other time. I have to get ready for work now. Enjoy your lives, people. Enjoy each other and stay out of corners. Old Lodge Skins is right: There is no power in a square.
Peace to you all.
Mike
Friday, June 5, 2009
Strange Love, Doctor....
Or- How I stopped worrying and learned to love (not) the probe.
So, there we were; Karen and I in a stuffy little procedure room, waiting. And waiting. Karen is reading "Mutant Message DownUnder" and I am trying not to be wigged out by the apparatus surrounding us. I am to have a 'rectal ultrasound' and I can hardly wait. Dana, the nurse, told me to strip down and cover myself with the sheet. "The doctor will be in when he is finished with another patient." Finished? As in done? Or done in? She went on to explain. "During the procedure a probe the size of a quarter will be inserted into your rectum and the doctor will ..." I stopped listening after she said 'quarter'. I suspect they want you to think quarter, as in 1/4. But I know a quarter is one inch in diameter. Besides, I have already seen the evil device.
A gleaming stainless steel Love Rocket of Doom waits to probe me; to- (cue the theme song from the original Star Trek) 'boldly go where no man has gone before.' This sadistic machine the size of the solid fuel booster rockets that propell the space shuttle into orbit, is going to reach an 'asstral plane' inside me. I am not giddy with anticipation.
I look around the room, hoping to find something that will distract my mind from the impending rendevous. I look at the ultrasound monitor. My name is there, along with the doctor's name; Dr. Anders Mellgren. "He sounds Swedish" I tell Karen. "If he talks like the Swedish chef on the Muppets" she says "we're outa here."
A few moments later, in strolls the good doctor. He introduces himself and... of course. You knew it already. He has a Swedish accent. I steal a quick look at Karen but she dodges my eyes. At least, I tell myself, he doesn't look like he just got off the boat. The procedure is uncomfortable, to say the least. How do you describe a deep throbbing pain moving all around in your abdomen? And of course he did not have the data telling him how far in the tumor is, so there was a good deal of unnecessary rectal probing before he asked, in his most deliciously accented English, "How far is it?" I know, I know, there could be all sorts of answers at this point, but I reach around with my hand, extend a forefinger and tell him, "5 centimeters". He backs up a bit and the ultrasound begins. "The worst is over" he says and I am O so grateful.
Karen has not just been waiting patiently while all this is going on. She has been holding my hand, stroking my forehead to help me relax the tension there; and she"s talking to me, making me listen to her voice, reminding me to breathe, just breathe. I try to focus on her words, her touch and I meet with some success. I am sure there will be other times to practice this teamwork.
When Dr. Mellgren is done he gives us a quick rundown of what he found and the news is good. No apparent involvement in fatty tissue or muscle outside the rectum. He leaves and Dana gives me some cold wet paper towels to wipe my brow and then we are alone, again. I clean up and we leave, starting the long road back home. Today I called down to find out if the surgeon has looked at all the test data. We want to know what he has found and what he recommends. But we are still waiting. Waiting requires patience which is why we are called 'patients'.
I am, we are, thankful to all of you for your support. I am glad angels have found Karen. I worry most about Karen and how she is holding up in all this. The last time I had cancer I knew an angel too. Maybe someday I will tell you about her and all she did for me and many other people living with cancer. Have a great weekend and take care of each other. We love you all.
Mike
So, there we were; Karen and I in a stuffy little procedure room, waiting. And waiting. Karen is reading "Mutant Message DownUnder" and I am trying not to be wigged out by the apparatus surrounding us. I am to have a 'rectal ultrasound' and I can hardly wait. Dana, the nurse, told me to strip down and cover myself with the sheet. "The doctor will be in when he is finished with another patient." Finished? As in done? Or done in? She went on to explain. "During the procedure a probe the size of a quarter will be inserted into your rectum and the doctor will ..." I stopped listening after she said 'quarter'. I suspect they want you to think quarter, as in 1/4. But I know a quarter is one inch in diameter. Besides, I have already seen the evil device.
A gleaming stainless steel Love Rocket of Doom waits to probe me; to- (cue the theme song from the original Star Trek) 'boldly go where no man has gone before.' This sadistic machine the size of the solid fuel booster rockets that propell the space shuttle into orbit, is going to reach an 'asstral plane' inside me. I am not giddy with anticipation.
I look around the room, hoping to find something that will distract my mind from the impending rendevous. I look at the ultrasound monitor. My name is there, along with the doctor's name; Dr. Anders Mellgren. "He sounds Swedish" I tell Karen. "If he talks like the Swedish chef on the Muppets" she says "we're outa here."
A few moments later, in strolls the good doctor. He introduces himself and... of course. You knew it already. He has a Swedish accent. I steal a quick look at Karen but she dodges my eyes. At least, I tell myself, he doesn't look like he just got off the boat. The procedure is uncomfortable, to say the least. How do you describe a deep throbbing pain moving all around in your abdomen? And of course he did not have the data telling him how far in the tumor is, so there was a good deal of unnecessary rectal probing before he asked, in his most deliciously accented English, "How far is it?" I know, I know, there could be all sorts of answers at this point, but I reach around with my hand, extend a forefinger and tell him, "5 centimeters". He backs up a bit and the ultrasound begins. "The worst is over" he says and I am O so grateful.
Karen has not just been waiting patiently while all this is going on. She has been holding my hand, stroking my forehead to help me relax the tension there; and she"s talking to me, making me listen to her voice, reminding me to breathe, just breathe. I try to focus on her words, her touch and I meet with some success. I am sure there will be other times to practice this teamwork.
When Dr. Mellgren is done he gives us a quick rundown of what he found and the news is good. No apparent involvement in fatty tissue or muscle outside the rectum. He leaves and Dana gives me some cold wet paper towels to wipe my brow and then we are alone, again. I clean up and we leave, starting the long road back home. Today I called down to find out if the surgeon has looked at all the test data. We want to know what he has found and what he recommends. But we are still waiting. Waiting requires patience which is why we are called 'patients'.
I am, we are, thankful to all of you for your support. I am glad angels have found Karen. I worry most about Karen and how she is holding up in all this. The last time I had cancer I knew an angel too. Maybe someday I will tell you about her and all she did for me and many other people living with cancer. Have a great weekend and take care of each other. We love you all.
Mike
Angels
I've been seeing Angels lately and they look nothing like Caravaggio's angels with their dark clothes and bent brown wings. They don't resemble Raphael's round faced cherubs.They don't descend from the heavens, robed in white, with glowing halos on great swan wings. They look nothing like the Hallmark card image of angels in fact they look just like us.
So, how do I know they are angels? Because they just show up, when you aren't paying attention and they bring you the very message you need to hear even when you don't know it. They appear in your life for no explainable reason and give you things you need, give you things you didn't know you need.
The Angel I had yesterday, we'll call her Jeanette, arrived in the store while I was working. She tells me she has heard of Mike's cancer and wanted me to know some things. She tells me she's walked my walk. She says she "gets it" and that not everyone will get it because you have to be in it or have been through it to really get it. She says it's hard, and I believe it because it is. She says there are really big benefits to come and that I can't see those now but I will. She says that cancer will either drive us apart or bring us together and after she listens to me talk about my relationship with Mike she says that if Mike and I are close and our love is strong now and if we make it through this as a couple that I will look back and see that what I feel for Mike now is nothing compared to what I will feel in the future.
She tells me to keep on living our days and making the most of them and not to put our lives on hold waiting for appointments and treatments but to do things while we wait, do what we love and love it while we do it. She tells me stories of her husbands battle with cancer and hers too. She tells me that it was love that kept him going even when the doctors said he had a year. She tells me even the doctors were amazed he lived for 40 some years afterwards.
She says I'll be OK and that I will be strong and that we will get through this and we will learn how to cope. She says this all while looking at me with bright eyes and a smile and I believe her. She hugs me tight and tells me once more that I'm going to be OK...that we are going to be OK and leaves.
So, this is an angel, no wings, no feather, no halos, no fanfare, just jeans and a red T-shirt. Just a regular looking person...like you, like me... sent at the right time to the right place with the right message and a handful of hope. A miracle...a freaking miracle.
Peace,
Karen
So, how do I know they are angels? Because they just show up, when you aren't paying attention and they bring you the very message you need to hear even when you don't know it. They appear in your life for no explainable reason and give you things you need, give you things you didn't know you need.
The Angel I had yesterday, we'll call her Jeanette, arrived in the store while I was working. She tells me she has heard of Mike's cancer and wanted me to know some things. She tells me she's walked my walk. She says she "gets it" and that not everyone will get it because you have to be in it or have been through it to really get it. She says it's hard, and I believe it because it is. She says there are really big benefits to come and that I can't see those now but I will. She says that cancer will either drive us apart or bring us together and after she listens to me talk about my relationship with Mike she says that if Mike and I are close and our love is strong now and if we make it through this as a couple that I will look back and see that what I feel for Mike now is nothing compared to what I will feel in the future.
She tells me to keep on living our days and making the most of them and not to put our lives on hold waiting for appointments and treatments but to do things while we wait, do what we love and love it while we do it. She tells me stories of her husbands battle with cancer and hers too. She tells me that it was love that kept him going even when the doctors said he had a year. She tells me even the doctors were amazed he lived for 40 some years afterwards.
She says I'll be OK and that I will be strong and that we will get through this and we will learn how to cope. She says this all while looking at me with bright eyes and a smile and I believe her. She hugs me tight and tells me once more that I'm going to be OK...that we are going to be OK and leaves.
So, this is an angel, no wings, no feather, no halos, no fanfare, just jeans and a red T-shirt. Just a regular looking person...like you, like me... sent at the right time to the right place with the right message and a handful of hope. A miracle...a freaking miracle.
Peace,
Karen
Wednesday, June 3, 2009
That which does not kill us....
There's frost on the marigolds this morning. I covered the tomato plants out in the garden but left everything else to fate. Most of the other plants are closer to the house and I'm hoping that their proximity has spared them. The house is cold and I refuse to turn the heat on - it's June 3rd after all. I'm sitting in bed with a cup of coffee and the heated mattress pad on low. One of the rabbits is thumping in her cage. I'm going to guess her water is frozen and this is her way of voicing dismay. I'll go out in a little while and see what I can do for her. Right now I'm taking care of me. It's so beautifully quiet. No city buses rumbling by, no beep beep beeping of trash trucks, no jets taking off, no cars alarming, no people shouting....just quiet punctuated by the soft voice of a bluebird now and again.
Mike is off to work already and I will be following suit in about and hour and a half. It'll be good to get back into some routine and feel like "normal" or at least familiar. Maybe, familiar is the better word choice? Familiar, where the path is even and the pace slower. Where change is more deliberate and gradual occurrence. Life changes everyday, I get this, but we now seem to be on such an accelerated track I can't keep up. OOOf!
The past few days have been....have been....what? Hard? As if hard could describe it. Emotional roller coaster? Too cliche'. How about this? Dredge up every emotion you can find, tuck it in your purse and then go running across a crowded street, trip, fall and watch all the contents spill out across the pavement. Now, try to get up, find everything, put it back in your purse and try get off the street before a bus runs you over and don't forget to try to walk away pretending nobody as noticed.
It's like that.
This weekend we were sent to the wrong doctor. Thankfully, he pulled strings and we were able to see who we needed to see and get the tests we needed to make the plan. We don't exactly have that plan yet...Dr Madoff needs to read the reports from the 3T MRI and the ultrasound and get back to us, hopefully today. So, we are waiting, again. And our life is on hold and I'm not going to complain about that because while we are on hold it's more familiar and this is good.
I'm still scared, we are still scared. We have options but they are all complicated and this whole ordeal is going to be long and ugly. I saw first hand just how ugly during the sigmoidoscopy and the ultrasound. Both Mike and I have seen the "lesion". Picture a ping pong ball, now squash it, then picture a cold sore or fever blister that size. That's what we are up against.
I also got my first glimpse of the pain Mike must walk through as I watched the hurt rip across his beautiful face during the ultrasound. And then there is the grief, fear and anger...wow. I'm going to see more of this, feel more of this, I know that but don't know how a person gets used to it? I know we'll get through it...but seriously...how DO you get used to it?
Peace,
Karen
Monday, June 1, 2009
And then the wicked witch said...
Ok, this has been one long day and we are in a daze. There was some misunderstanding in the scheduling and the visit with the oncologist was not all that necessary because he told us what we already knew. But he intervened on our behalf and got us in to see a colo-rectal surgeon, saving us another trip and starting the process on its way.
Two enemas later the surgeon did a sigmoidoscopic exam and we all, Karen too, got to look at the monster in my ass. The surgeon did a 180 with the scope and we got to see the monster from behind as well. Ugly f-------. The monster, not the surgeon.
I will see if I get this correct. Karen is right beside me and can correct what I get wrong before I send it along. Options- we have...3? 1st-radiation and chemo to shrink the tumor before surgery. If the tumor shrinks that means I have a chance to get out of this without a permanent colostomy. If the radiation/chemo option is used I will probably get that for 6 weeks, then something like 2 months off and be looking at surgery in the fall. I will have an iliostomy while I heal
Number b. Surgery first, probably a colostomy or iliostomy, then some kind of treatment.
Option 3. Removal of my colon with a permanent iliostomy and no more colon cancer.
Glossary- Iliostomy- an opening through my abdomen where the small bowel would be attached to a bag to collect what the colon used to collect. Depending on the option this would be permanent or temporary(few months).
Colostomy- another opening for a bag, usually lower on the abdomen to collect what the rectum used to collect. This may or may not be a permanent solution.
Part of the problem is that the tumor is so low in my rectum that if the tumor doesn't shrink and surgery affects the sphincter muscles, then I will be an ostomy patient.
This has hit us very hard, very hard and we have at times felt hopelessness and tears and anger and other things too, I guess. Personally I remember what anger and rage are like and I remember how in-effective they are; nothing changes and I usually felt even more stupid or whatever. So today I felt impotent because there was no good way to deal with the emotions. I guess just trying to breathe in and breathe out is a good way but the smile that is supposed to follow has escaped me so far. I want to be angry and know it won't help so WTF am I, are we, supposed to do? Then there is the head game of trying to deal with the idea of an ostomy and self-image and what it will do to my six-pack abs, etc, etc.
And then what?
Dunno.
Tomorrow- rectal ultrasound and then head home. We went to see the wizard and we already knew there is no place like home
Love and peace to all of you from Mike and Karen
Two enemas later the surgeon did a sigmoidoscopic exam and we all, Karen too, got to look at the monster in my ass. The surgeon did a 180 with the scope and we got to see the monster from behind as well. Ugly f-------. The monster, not the surgeon.
I will see if I get this correct. Karen is right beside me and can correct what I get wrong before I send it along. Options- we have...3? 1st-radiation and chemo to shrink the tumor before surgery. If the tumor shrinks that means I have a chance to get out of this without a permanent colostomy. If the radiation/chemo option is used I will probably get that for 6 weeks, then something like 2 months off and be looking at surgery in the fall. I will have an iliostomy while I heal
Number b. Surgery first, probably a colostomy or iliostomy, then some kind of treatment.
Option 3. Removal of my colon with a permanent iliostomy and no more colon cancer.
Glossary- Iliostomy- an opening through my abdomen where the small bowel would be attached to a bag to collect what the colon used to collect. Depending on the option this would be permanent or temporary(few months).
Colostomy- another opening for a bag, usually lower on the abdomen to collect what the rectum used to collect. This may or may not be a permanent solution.
Part of the problem is that the tumor is so low in my rectum that if the tumor doesn't shrink and surgery affects the sphincter muscles, then I will be an ostomy patient.
This has hit us very hard, very hard and we have at times felt hopelessness and tears and anger and other things too, I guess. Personally I remember what anger and rage are like and I remember how in-effective they are; nothing changes and I usually felt even more stupid or whatever. So today I felt impotent because there was no good way to deal with the emotions. I guess just trying to breathe in and breathe out is a good way but the smile that is supposed to follow has escaped me so far. I want to be angry and know it won't help so WTF am I, are we, supposed to do? Then there is the head game of trying to deal with the idea of an ostomy and self-image and what it will do to my six-pack abs, etc, etc.
And then what?
Dunno.
Tomorrow- rectal ultrasound and then head home. We went to see the wizard and we already knew there is no place like home
Love and peace to all of you from Mike and Karen
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