Yesterday, for five brief minutes, I was in heaven. Heaven turned out to be the infusion lab at MeritCare's Medical Oncology Clinic. Funny, but there weren't any puffy white clouds, golden gates or winged cherubs flying around playing trumpets but I heard Drew Carey from a TV across the hall asking people to "come on down" so maybe?????
We were there to get Mike's "port-a-chemo" changed out. They pull the needle from the port, clean the site and insert a new needle every week. What this means is that there is a small window where he doesn't have tubing or the pump hanging from his body. There is no tape, no tubes, no needle...just skin. I asked our nurse Erin if she could just let me hug Mike for a few minutes before she put all the paraphernalia back on and she said yes and left us alone for a bit.
It's hard to believe that two and a half weeks ago I was all bent out of shape because his port was in my way. Yesterday the little bump didn't matter not even a little bit as I ran my hands over and over Mike's skin where it's been covered with tape and tubing for the last 14 days. I wrapped my arms around him without worrying about pinching the tube or bumping and dislodging the needle. There was no medicine bag to move and I was able to close my eyes and nestle my face into the sweet pocket of his shoulder. For a few brief moments there was nothing between us but skin and I could forget there was cancer. It was heaven. This one little bitty thing...was heaven.
So, now, for the next three Wednesdays I have five minutes of heaven to look forward to. That is, if Mike continues to tolerate the chemo. And if it all goes well, August 21st will be a day of celebration when he is scheduled to be done with treatment and I will have all of his skin back and for the next two months all that will be between us will be skin.
Peace,
Karen
Thursday, July 30, 2009
Tuesday, July 28, 2009
Side Effects...
When you start out on this portage the information you are given mentions side effects: acute and longterm. Acute side effects are those that are more immediate and tend to diminish when active treatment stops. Long term effects are those that linger long after treatment stops, or those that show up later. The pamphlets mention those that are most likely to occur and what can be done to treat them. There are so many possible things that can go wrong I can't remember them all or keep them straight in my mind. I think any time I don't feel good or have something that is not right, I will call it a side effect.
Most everyone knows about hair loss, which is something I could care less about. In my case the major things to watch for are diarrhea, mouth sores, fatigue, dry mouth, burning and redness of the skin in the treated areas, sensitivity to the sun, reduced resistance to infection and lowered blood counts. Two weeks into treatment is when we can expect these delights to make their appearance.
I can't have late nights anymore. This past weekend proved that. Have you ever been so tired that you have this penetrating headache and you feel a bit dizzy? Fun, ain't it? I have that now. Hot sunlight makes me feel flushed and headachy right away. I rinse my mouth with salt water several times a day to prevent mouth sores. And there are other things that are showing up but I really don't need to go into all the details.
Not all the side effects are physical.
Last week someone Karen knows went through emergency surgery to repair a blockage. This gal has been a tough survivor. In the past few years she has been through the gamut of treatment and surgeries and now she is at the end of her road. Watching this is tough for Karen and I: contemplating the end for someone else and hoping it is not the path we have to follow. Hoping, but not talking, about that possibility. I remember the awkwardness I felt visiting people in the hospital who were not going to survive. This was back in '91 and '92 when I was going through cancer the first time. I was doing well and not really sure what I was supposed to do. Cheer them up? Give them hope? Sometimes these were people I knew from the support group and we saw each other when we had blood drawn before our chemo treatments. When their counts were too low they took the news gracefully and left for home. It was a time where, if you weren't careful, you could feel bad for being healthy enough to endure another round of poison.
I'd be lying if I tried to say I never think of the end; of being terminal and what that would mean to me, to us, to Karen. I can't ignore it but I certainly don't have to water that seed. Still, something about this weekend made me pause. I found myself wondering how do you know when what you have just done, or seen, will be the last time? I remember coming home from the wedding reception with this great line in my head but, as usual, didn't write it down. Some thing in the program at the reception touched me. I apologize for not being able to remember so I could tell you how the thought planted itself in me. I suspect people in my shoes wonder about this more often than most. Still I doubt you can deny the thought and only a liar would say they have never looked upon a loved one and wondered if they'd ever see them again. All the more reason to be kind, loving and thoughtful in the present moment.
As busy as this past week has been, the good side effects have been worth whatever they cost me physically. Friends showed up and we shared meals and laughter together. Family members came to visit. We played together and slept late on the weekend. Old friends dropped in via email and sent their wishes for a good recovery. Nearly every day, either Karen or I, or sometimes both of us, are touched by the kindness and consideration of others. These blessings come like antidotes to counteract the necessary evil of my treatment. We'll take all of those types of side effects that we can get.
Thanks to all who are supporting us. Even if we don't know you, we know you are there because of the strength you send our way.
Peace,
Mike
Most everyone knows about hair loss, which is something I could care less about. In my case the major things to watch for are diarrhea, mouth sores, fatigue, dry mouth, burning and redness of the skin in the treated areas, sensitivity to the sun, reduced resistance to infection and lowered blood counts. Two weeks into treatment is when we can expect these delights to make their appearance.
I can't have late nights anymore. This past weekend proved that. Have you ever been so tired that you have this penetrating headache and you feel a bit dizzy? Fun, ain't it? I have that now. Hot sunlight makes me feel flushed and headachy right away. I rinse my mouth with salt water several times a day to prevent mouth sores. And there are other things that are showing up but I really don't need to go into all the details.
Not all the side effects are physical.
Last week someone Karen knows went through emergency surgery to repair a blockage. This gal has been a tough survivor. In the past few years she has been through the gamut of treatment and surgeries and now she is at the end of her road. Watching this is tough for Karen and I: contemplating the end for someone else and hoping it is not the path we have to follow. Hoping, but not talking, about that possibility. I remember the awkwardness I felt visiting people in the hospital who were not going to survive. This was back in '91 and '92 when I was going through cancer the first time. I was doing well and not really sure what I was supposed to do. Cheer them up? Give them hope? Sometimes these were people I knew from the support group and we saw each other when we had blood drawn before our chemo treatments. When their counts were too low they took the news gracefully and left for home. It was a time where, if you weren't careful, you could feel bad for being healthy enough to endure another round of poison.
I'd be lying if I tried to say I never think of the end; of being terminal and what that would mean to me, to us, to Karen. I can't ignore it but I certainly don't have to water that seed. Still, something about this weekend made me pause. I found myself wondering how do you know when what you have just done, or seen, will be the last time? I remember coming home from the wedding reception with this great line in my head but, as usual, didn't write it down. Some thing in the program at the reception touched me. I apologize for not being able to remember so I could tell you how the thought planted itself in me. I suspect people in my shoes wonder about this more often than most. Still I doubt you can deny the thought and only a liar would say they have never looked upon a loved one and wondered if they'd ever see them again. All the more reason to be kind, loving and thoughtful in the present moment.
As busy as this past week has been, the good side effects have been worth whatever they cost me physically. Friends showed up and we shared meals and laughter together. Family members came to visit. We played together and slept late on the weekend. Old friends dropped in via email and sent their wishes for a good recovery. Nearly every day, either Karen or I, or sometimes both of us, are touched by the kindness and consideration of others. These blessings come like antidotes to counteract the necessary evil of my treatment. We'll take all of those types of side effects that we can get.
Thanks to all who are supporting us. Even if we don't know you, we know you are there because of the strength you send our way.
Peace,
Mike
Monday, July 27, 2009
Still Here
It's been a busy week at Whiskey Jack Flats. We've had visitors from Vermillion South Dakota, LaCrosse Wisconsin and Antioch Illinois (the latter being my sister who is here till Wednesday. We went to a wedding rehearsal dinner where we visited with guests from England and Scotland and we attended a very lovely multi-national wedding on Webster Lake. I got to meet some old friends of Mike's at the party and had a delightful time visiting with them both.
Mike's been doing fairly well. Late nights don't bode well with him right now so we have to be mindful of time and get him home before he turns into a pumpkin (I never know what to do with his stem when he does). He is still eating like a pair of teenage boys and his basic energy seems to be holding. We are thankful for this.
Today Linda and I are going to kayak on the Turtle River and then if Mike is feeling up to it we are going try to paddle on Big Turtle Lake this evening. Our friend George brought us two new carbon fiber paddles and needless to say Mike and I are excited to try them out. Thanks George!
So just a note to let you know we are still here and hanging in with some really beautiful days and good friends.
Peace,
Karen
Wednesday, July 22, 2009
Crystal Balls, Chicken Bones and Miss Cleo
Prognosis - a prediction of the course of a disease
"What is Mike's prognosis?" I've been asked this question quite a few times in the last week. Almost exclusively by someone who doesn't know either of us very well. The answer has been the same each time, "I don't know?"
The question puzzles me and I don't know because, in all the medical visits he's had these past few months that question has never come up. Mike hasn't asked it. I haven't asked it. No doctor has volunteered it and no statistical number has been assigned to his cancer. All I know is that nobody has said the "T" word - terminal - so to me that means a full recovery. That's what we are planning anyhow. A full recovery.
I am not a big believer in statistics. People beat them all the time. Statistics can be manipulated to support any case, argument or outcome. They aren't concrete and they certainly are, without any certainty, unable to predict the future. So, what is a doctor doing when he is prognosticating? Does that prognosis carry any more weight than say, what a palm reader does with your hand in hers? What about tea leaves, horoscopes or casting chicken bones? Are these any more sure? Why is it that because a man goes through a million hours of education at an Ivy league school his prediction of the future carries more weight than say Miss Cleo? Really, can any of us foresee the future?
Not!
All we have is now. The past is gone. The future is always the next breath away and never here. We can only play those painful mind games with the future. The kind I was playing tonight in bed. The kind that is robbing me of sleep. The "bad head" game that has me here blogging some sense into myself instead of lying with my arm across Mike's chest sleeping. We all have these times, it's a sad part of our human condition.
Tich Nat Han says: "The most precious gift we can offer others is our presence. When mindfulness embraces those we love, they will bloom like flowers."
Be present my friends and family. Enjoy what you have in front of you each and every moment. Enjoy your flowers.
Peace and sweet dreams,
Karen
Tuesday, July 21, 2009
Maple Oatmeal Bread
Several of you have inquired about this recipe and it can be found at http://www.thefreshloaf.com/recipes/mapleoatmealbread
I will post the Cottage Cheese Bread recipe when I have a bit more time. Until then....happy baking!
May your dough always rise!
Karen
I will post the Cottage Cheese Bread recipe when I have a bit more time. Until then....happy baking!
May your dough always rise!
Karen
Monday, July 20, 2009
A Change of Menu
Back in 2001 when Mike first found me I was subsisting on hazelnut lattes and pop-tarts. I ate at McDonald's, drank Coke by the gallon, loved boxed mac-n-cheese and didn't so much as know what a black bean was let alone eat one! Salad was something you just had to get through before you got to the main entree' and the floor of my truck was littered with Zebra Cake wrappers. My eating habits were at best...deplorable.
Then came Mike. He loved me and he loved to eat.He loved to eat well and with great patience changed my eating habits. He helped wean me off of pop-tarts - they are now reserved as a treat for camping trips - and onto a healthier style of eating. Over the years we have investigated different foods, new ways of preparing meals and healthier alternatives to what we already love. We rarely eat processed foods. Lattes are a treat not a daily habit. We have all but wiped out high fructose corn syrup from our diet. We don't use bleached flour and honey and maple syrup are the sweeteners of choice. Black beans are now part of my life, I eat more rice, salads have become meals. A whole new world of food has been open to me. In fact I'm sitting here thinking about eating an avocado for breakfast! An AVOCADO! Who knew?
A few weeks ago my sister gave me this wonderful book called The Flexatarian Diet. It's written by a Wisconsinite for those of us who want to be "sometimes" vegetarians but would occasionally like a bratwurst. Mike and I have been experimenting with some of the recipes in the book and are really loving them. Less animal protein; more new flavors and textures. Less meat ; more plant protein. More whole foods and less refined foods, more fiber. And that is where the new problem lies. Fiber.
Because of the side effects of Mike's treatment he has to cut way back on fiber! Mike's man plumbing is going to be irritated by the radiation and chemo. So, what he can and can't eat has completely changed. Whole grains are out, spicy food is out, nuts and seed are out, pickles, popcorn, fresh, unpeeled fruit, pears, melons are out. Raw vegetables are out (in mid garden season....great!). Veggies that aren't cooked to death are out. No granola, oatmeal or wild rice. No alcohol. And this is the short list!
So, what can he eat?...refined food. White bread. Mac-n-cheese. Lots of pasta but not so much with the tomato sauce. Mashed potatoes. Non-acidic fruit. Cookies, instant rice, canned veggies and cream soups. Pop-tarts? Probably.He's in the store looking at boxed dinners, noodle side dishes and canned soup. I managed to walk him past the bread isle without him noticing. It was brutal. I about had a heart attack in the grocery store last night as Mike threw stuff into the cart that I haven't seen in our cupboards in years! It's all so counter intuitive now! I've changed and we've worked hard at what we choose to eat and now...this!
So, I tell myself, it's only for five weeks, but doesn't it take like 3 weeks to develop a new habit? What if...? I can't think it. I don't have to change my eating only Mike does. But I pledged my solidarity to him. I said, "where you go I go." And here I go feeling like a recovering alcoholic at a kegger. All my old favorites are whispering, "Come on Karen, you know you want me." I'm afraid to take that first bite of Kraft Mac & Cheese or wants Hamburger Helper? What if he wants 99 cent pot pie on minute rice? I'm doomed! I'm doomed! Damn this cancer!
So, I tell myself, be strong, strategize, plan what you can. Make most of it yourself. Baking white bread isn't the end of the world. In fact, Corlis and Pam just sent us an awesome artisan bread baking book, the first batch is n the fridge and will go in the oven today (white bread, thanks you two). We can do this I remind myself as I walk out to the garden, pick a pea pod and pop it into my mouth. I brush my hands over the tops of the tomato plants, move a squash runner to the fence, smile at a pole bean tendril climbing the wire and bend over to look at the happy little broccoli guys. I smile and tell them all...we can do this.
Peace
Karen
Friday, July 17, 2009
And the Winners Are!
Susan Chapman with 7 correct wins a bottle of Asira body cream donated by the Minnepolis Radisson Hotel on Washington Avenue
Elaine Kelly with 6 correct wins a bottle of Asira mouthwash donated by the Minneapolis Radisson Hotel on Washington Avenue
Cindi Wiebe with 4 correct answers wins a simulated leather eye glass case donated by MeritCare Same Day Surgery in Bemidji Minnesota
We only had three brave souls give the quiz a try and all were winners! Congratulations to everyone. Your prizes may be picked up at the Forbes' residence or if you prefer we can mail them to you.
Now for the answers to this week's quiz:
1.What is Karen's favorite bread recipe? Maple Oatmeal
2. Who do we refer to as the Swedish Chef? Dr Malgren
3. What does Terry carry in his pocket for good luck? Buck-eye
4. What did Mick Jaeger say? You can't always get what you want but if we try sometime you get what you need.
5. What got fixed on 'Ruby'? The Johnson Rod
6. Karen's nursing instructor said "___% of healing takes place in the brain." 90%
7. What type of tumor does Mike have? Adenocarcinoma
8. According to the blog, where is the Emerald City? Minneapolis
9. What was Mike's first CEA result? 1.5
10. Which Carl Sandburg poem is posted on the blog? Fog
As always, thanks for playing along and stay tuned for more quizzes and fabulous but cheap prize give aways!
Elaine Kelly with 6 correct wins a bottle of Asira mouthwash donated by the Minneapolis Radisson Hotel on Washington Avenue
Cindi Wiebe with 4 correct answers wins a simulated leather eye glass case donated by MeritCare Same Day Surgery in Bemidji Minnesota
We only had three brave souls give the quiz a try and all were winners! Congratulations to everyone. Your prizes may be picked up at the Forbes' residence or if you prefer we can mail them to you.
Now for the answers to this week's quiz:
1.What is Karen's favorite bread recipe? Maple Oatmeal
2. Who do we refer to as the Swedish Chef? Dr Malgren
3. What does Terry carry in his pocket for good luck? Buck-eye
4. What did Mick Jaeger say? You can't always get what you want but if we try sometime you get what you need.
5. What got fixed on 'Ruby'? The Johnson Rod
6. Karen's nursing instructor said "___% of healing takes place in the brain." 90%
7. What type of tumor does Mike have? Adenocarcinoma
8. According to the blog, where is the Emerald City? Minneapolis
9. What was Mike's first CEA result? 1.5
10. Which Carl Sandburg poem is posted on the blog? Fog
As always, thanks for playing along and stay tuned for more quizzes and fabulous but cheap prize give aways!
Wednesday, July 15, 2009
Holy Ghost of Elvis...
Hey, Hey, I'm all pumped up
I am not trying to make a bad pun, but I am pumped. I have a small chemo pump that whirrs every few minutes, giving me another 0.1 mls. of 5-FU. While this stuff is a poison, in a sense, and we have our own chemo spill cleanup kit, I prefer not to think of it in a negative sense. You won't catch me calling my medicine a bad name; that's just bad juju, plain and simple.
I know Karen is, or was, having some difficulty dealing with what this whole process is doing to me, and us, because we are in this together and what affects me affects Karen as well. I feel a similar loss for 'her' spot on my shoulder. I know there are other considerations as well, that make dealing with this cancer, difficult for the woman I love. This is a process and we will have to work on it one day at a time.
I know that in a day or two I will feel more comfortable with my medicine bag. The tubing and fittings feel a bit awkward and the port is lump that stings a bit because of the needle. I just try to tell myself this is only temporary and that I, we, can do this for the next 5 1/2 weeks. I know that we will look back and be grateful. We may even wonder what all the fuss was about. I am in this for a complete cure and I don't want any obstructions, or slowdowns. I don't want to have to stop because of low blood counts or mouth sores or diarrhea. We have started and I want everything to be forward progress from here on out.
Karen and talked last night about some of the aspects of this that are so hard for her. And she is correct. The cancer patient has an easier time than the loved one, or spouse or caregiver. We each have our unique areas of worry and interest. Where they intersect, we are one in seeking a cure. When our areas don't intersect we are sometimes alone, with our worries and fears. I like to think Karen and I are aware of this and the need to continue to improve our communication. This is too big and scary to do all by yourself. We need each other even if we aren't always looking at the problem in the same way.
On a funnier note, I believe she mentioned 'old people sex' which always gives us a laugh but then I guess you'd have to be there and believe me, you don't want to see that. Anyway, we should probably mention some of the 'interesting' aspects of the recent changes to this part of our life.
The first Pop Quiz is over. Three contestants came forth and we will be anouncing the winners in a future blog. Take care everyone. We'll see you again, soon.
Peace,
Mike
Pumped up - not so much
Today is the day we've been waiting for since May 18th. We begin to actively fight Mike's cancer. I think Mike has more to do with it than me I'm just a kind of pit crew standing by with my torque wrench and grease. Still, today is the day. Mike is pretty excited. Me, not so much.
I know, weird huh? It's hard to explain. I, myself, can't quite finger it. I feel a sense of trepidation.We are about to make him sick to make him better and I don't know exactly how sick (nobody can say). We are going to be living cancer for 24/7 for the next 5 1/2 weeks. I'm not excited about that. Up until now there have been times when it was almost easy to forget it, especially these last two weeks. It was easy to pretend we were "normal." But on Friday Mike got three little tattoos - one on each hip and one low on his back just above his tailbone. In time I may forget they are there; become accustomed to them. Right now I know they are there. I know his body well enough that I see them and they remind me that cancer is with us.
On Monday Mike got his port put in and every time he takes off his shirt cancer is right there below his left collar bone. Of special note: the port is in my spot! This especially irritates me. It's been placed right where I nestle my head on Mike's shoulder. Damn cancer.
Today, Mike gets his pump or as our friend Becca calls it his Porta Chemo. She thinks 24/7 chemo is cruel and I think so too. However, I can't think of it as being cruel to Mike. I need to think of it as being cruel to the cancer. The cancer is cruel to Mike.
This pump will be with us 24/7. It will be hooked up to his port to deliver a continuous metered dose of 5FU (5 Fuck You????) to injure the cancer cells and make them more susceptible to the radiation and shrink the tumor for better surgical outcome. Yay, right? Ok, if you say so. It's just seems like another invasion. This pump is going to be living with us for a month and a half. It's going to be like having a baby and we are too old for babies! This pump will go everywhere with us, with Mike. It will be at dinner every day. It will watch movies with us, garden with us, shower with us and jeez it will go to bed with us and I mean that in all senses of the term "go to bed" with us! That ought to be interesting. Old people sex is hard enough what with bad backs and leg cramps now we'll have a little black box and IV tubing to deal with. Stay tuned for updates on that!
The pump will be a 24/7 reminder of cancer. Yuck. So, it's not very exciting for me to think about all this starting today. I'll be excited when someone says the tumor is responding to treatment. I'll be excited if Mike doesn't get mouth sores, if he doesn't get sick, if he doesn't dehydrate, if this all goes well. If it doesn't, I'll just hate the cancer and it's imposition on our lives and I'll do my best to be there for Mike; to take care of him as best I can because that is all I can do. I can't fight this for him. I can't fix this and that's my frustration all along.
My friend Karen G took me to lunch yesterday. She's been on both sides of this cancer gig. She says it's way easier to be the person with the cancer than the loved one of someone who has it. She's right...this is way damned hard.
Peace,
Karen
I know, weird huh? It's hard to explain. I, myself, can't quite finger it. I feel a sense of trepidation.We are about to make him sick to make him better and I don't know exactly how sick (nobody can say). We are going to be living cancer for 24/7 for the next 5 1/2 weeks. I'm not excited about that. Up until now there have been times when it was almost easy to forget it, especially these last two weeks. It was easy to pretend we were "normal." But on Friday Mike got three little tattoos - one on each hip and one low on his back just above his tailbone. In time I may forget they are there; become accustomed to them. Right now I know they are there. I know his body well enough that I see them and they remind me that cancer is with us.
On Monday Mike got his port put in and every time he takes off his shirt cancer is right there below his left collar bone. Of special note: the port is in my spot! This especially irritates me. It's been placed right where I nestle my head on Mike's shoulder. Damn cancer.
Today, Mike gets his pump or as our friend Becca calls it his Porta Chemo. She thinks 24/7 chemo is cruel and I think so too. However, I can't think of it as being cruel to Mike. I need to think of it as being cruel to the cancer. The cancer is cruel to Mike.
This pump will be with us 24/7. It will be hooked up to his port to deliver a continuous metered dose of 5FU (5 Fuck You????) to injure the cancer cells and make them more susceptible to the radiation and shrink the tumor for better surgical outcome. Yay, right? Ok, if you say so. It's just seems like another invasion. This pump is going to be living with us for a month and a half. It's going to be like having a baby and we are too old for babies! This pump will go everywhere with us, with Mike. It will be at dinner every day. It will watch movies with us, garden with us, shower with us and jeez it will go to bed with us and I mean that in all senses of the term "go to bed" with us! That ought to be interesting. Old people sex is hard enough what with bad backs and leg cramps now we'll have a little black box and IV tubing to deal with. Stay tuned for updates on that!
The pump will be a 24/7 reminder of cancer. Yuck. So, it's not very exciting for me to think about all this starting today. I'll be excited when someone says the tumor is responding to treatment. I'll be excited if Mike doesn't get mouth sores, if he doesn't get sick, if he doesn't dehydrate, if this all goes well. If it doesn't, I'll just hate the cancer and it's imposition on our lives and I'll do my best to be there for Mike; to take care of him as best I can because that is all I can do. I can't fight this for him. I can't fix this and that's my frustration all along.
My friend Karen G took me to lunch yesterday. She's been on both sides of this cancer gig. She says it's way easier to be the person with the cancer than the loved one of someone who has it. She's right...this is way damned hard.
Peace,
Karen
Monday, July 13, 2009
First "Pop" Quiz
Loyal Readers of Whiskey Jack Flats, here is the moment you've all been waiting for:
Yeah! (hear the roar of the crowds?)
The Rules
READY? (hushed anticipation)
HERE IS YOUR FIRST QUESTION!
1.What is Karen's favorite bread recipe?
2. Who do we refer to as the Swedish Chef?
3. What does Terry carry in his pocket for good luck?
4. What did Mick Jaeger say?
5. What got fixed on 'Ruby'?
6. Karen's nursing instructor said "___% of healing takes place in the brain."
7. What type of tumor does Mike have?
8. According to the blog, where is the Emerald City?
9. What was Mike's first CEA result?
10. Which Carl Sandburg poem is posted on the blog?
Good Luck!
Mike & Karen
The PlayAlongAtHomeWJFPopQuiz!!!!
Yeah! (hear the roar of the crowds?)
The Rules
- We are asking 10, count 'em, ten questions.
- The top 5 players with the greatest number of correct answers will win a cheap but fabulous prize.
- The time of submission will be used to determine who wins if there is a tie.
- Players may respond to the blog via a comment or to our home email-mkforbes@paulbunyan.net.
The quiz will close at 5pm (our time) Wednesday the 15th of July.
READY? (hushed anticipation)
HERE IS YOUR FIRST QUESTION!
1.What is Karen's favorite bread recipe?
2. Who do we refer to as the Swedish Chef?
3. What does Terry carry in his pocket for good luck?
4. What did Mick Jaeger say?
5. What got fixed on 'Ruby'?
6. Karen's nursing instructor said "___% of healing takes place in the brain."
7. What type of tumor does Mike have?
8. According to the blog, where is the Emerald City?
9. What was Mike's first CEA result?
10. Which Carl Sandburg poem is posted on the blog?
Good Luck!
Mike & Karen
Sunday, July 12, 2009
The Fishing was GREAT!
The catching....no so much but who cares when you have this kind of eye candy! Wonder what exactly he was using for bait?
Peace,
Karen
Friday, July 10, 2009
The Ides of July
Funny how we remember the dates of significant events in our personal lives. We find a landmark or event and tie it to what is happening for us and later on, we remember that mental flag we planted, before we remember the special date. On Tuesday, July 15th, the Ides of July, I will have my first radiation/chemo treatment. Every month has an Ides and of course we remember how Brutus celebrated the Ides of March. April has its' own special Ides. And now I have one of my own.
Karen and I met with Dr. Bollinger this morning. He reminded me of my brother, Terry; tall, redhaired, Georgia drawl though Dr. Bollinger's is eroded by years of exposure to Minnesota and North Dakota. O, and he is nice, like Terry. We got the rundown on the treatment, what to expect and got to ask all the questions we had. Our list of questions is shrinking. This due to the literature we have received; some of which has been difficult to read because of the subject matter. And all the questions we have asked other physicians and friends and survivors, have shortened our own list a great deal. That is great in my opinion. Enough talking. Let's get this dog and pony show on the road!
We toured the actual radiation treatment area: lasers, but no laser light show. I was put in the simulator and they did some CT scans to make sure they will have me lined up correctly for treatment. This involves 3 tiny tatoos; one on each hip and one at the top of my butt crack. At least I think that is where it is. And that was all.
Monday, the port is installed. Wednesday the 15th- 9:15 radiation, followed by chemo at 10:00. Karen is kind of nervous with all this. I can hardly wait to get the damn ball rolling though I confess a huge backlog of stifled emotions waiting for a chance to let go. Right now it is time to go out and build a campfire. The evening is summer-cool; reminescent of early autumn and our friends Elaine and Lisa have come out to sit in the smoke, talk smart and laugh.
Thanks, everyone for your support. We appreciate it all so much and love you all.
Peace,
Mike
Karen and I met with Dr. Bollinger this morning. He reminded me of my brother, Terry; tall, redhaired, Georgia drawl though Dr. Bollinger's is eroded by years of exposure to Minnesota and North Dakota. O, and he is nice, like Terry. We got the rundown on the treatment, what to expect and got to ask all the questions we had. Our list of questions is shrinking. This due to the literature we have received; some of which has been difficult to read because of the subject matter. And all the questions we have asked other physicians and friends and survivors, have shortened our own list a great deal. That is great in my opinion. Enough talking. Let's get this dog and pony show on the road!
We toured the actual radiation treatment area: lasers, but no laser light show. I was put in the simulator and they did some CT scans to make sure they will have me lined up correctly for treatment. This involves 3 tiny tatoos; one on each hip and one at the top of my butt crack. At least I think that is where it is. And that was all.
Monday, the port is installed. Wednesday the 15th- 9:15 radiation, followed by chemo at 10:00. Karen is kind of nervous with all this. I can hardly wait to get the damn ball rolling though I confess a huge backlog of stifled emotions waiting for a chance to let go. Right now it is time to go out and build a campfire. The evening is summer-cool; reminescent of early autumn and our friends Elaine and Lisa have come out to sit in the smoke, talk smart and laugh.
Thanks, everyone for your support. We appreciate it all so much and love you all.
Peace,
Mike
Thursday, July 9, 2009
Mostly over it....for now
Ok, I'm mostly over it. Thanks to all you who sucked this along with me.
Tomorrow Mike sees the Radiation Oncologist here in town. Dr Bollenger will be running the radiation portion of treatment. On Monday Mike gets his port (http://www.portadvantage.com/patient/about_implanted_ports.html) if you want to look at it go to this website. He goes to outpatient surgery where Dr Roy will put it in. It will stay in for the duration of this cancer treatment - 8-9 months or longer.
I got to see an actual port the other day. One of my advertising reps for the store has one and let me see and touch it. She says it's the best thing that happened to her with treatment. It doesn't hurt and unless she's getting chemo she doesn't even know it's there. I hope it works out well for Mike.
We should find out tomorrow when the chemo/radiation starts. It will start together and last a total of five weeks. It seems like a long time now but I'm sure it will go fast and we will figure out how to work around Mike's port and continuous pump. They say he'll have a fanny pack to carry it in, which will work out good for me, I won't have to carry my purse!
I'm guessing everything will finally get going next week. We'll keep you posted.
In the meantime, jump on the blog, give us a "howareya or a that sucks". We'll leave the light on!
Peaceout
Karen
Tomorrow Mike sees the Radiation Oncologist here in town. Dr Bollenger will be running the radiation portion of treatment. On Monday Mike gets his port (http://www.portadvantage.com/patient/about_implanted_ports.html) if you want to look at it go to this website. He goes to outpatient surgery where Dr Roy will put it in. It will stay in for the duration of this cancer treatment - 8-9 months or longer.
I got to see an actual port the other day. One of my advertising reps for the store has one and let me see and touch it. She says it's the best thing that happened to her with treatment. It doesn't hurt and unless she's getting chemo she doesn't even know it's there. I hope it works out well for Mike.
We should find out tomorrow when the chemo/radiation starts. It will start together and last a total of five weeks. It seems like a long time now but I'm sure it will go fast and we will figure out how to work around Mike's port and continuous pump. They say he'll have a fanny pack to carry it in, which will work out good for me, I won't have to carry my purse!
I'm guessing everything will finally get going next week. We'll keep you posted.
In the meantime, jump on the blog, give us a "howareya or a that sucks". We'll leave the light on!
Peaceout
Karen
Wednesday, July 8, 2009
Listen...
I just want to follow up on what Karen said earlier. And what Arrows and Jan and Jeff said, as well.
How bad does it have to be before people quit saying "Well, you know, it could always be worse."?
What was it Steve Martin said? "Well, EXCUUUUSE ME!" Karen and I know it could be worse; we get that but when your life is fine, when you have nothing to really complain about, then having cancer is the worst. I really don't want to know how bad my life has to be before people quit saying, "Well, you know...". I just want them to quit saying it, period.
'Long as I am on a roll, here's another great one. I had a friend tell me something like this. "There's good in the world and there's bad in the world and somebody has to have the bad stuff and you just have the bad stuff." Man, you gotta love that. What complete and utter BS. I suspect there are still a few people that would like to see my head on a plate but the truth is, I have worked damned hard to be a better person and turn my life around and I don't want any bad stuff. I have had enough bad stuff in my life, thank you very much. I have held my dead infant daughter in my arms. I have already had one go-round with cancer. I have survived depression. Why can't the really and truly bad people get the bad stuff? I have had more than my share. Let someone else carry this load and see how happy they feel.
Notice the last word in the last sentence: FEEL. That's the key word. We don't need to be asked "How are you?" We need to be asked "How do you feel?" And then stand back and listen. In our house the rule is: Don't ask the question if you don't want to know the answer. When we tell you how we feel and what we feel, you will know how we are.
Let's drop the cliches', no matter how well-intentioned. Say something real and meaningful. When we need help, then say something helpful. How will you know when to say something helpful and when to just sit and listen? You won't know: unless you ask or we tell you. This is the real deal and we did not want it in our lives and it is as bad as it needs to be.
"Have a nice day."
Peace,
Mike
How bad does it have to be before people quit saying "Well, you know, it could always be worse."?
What was it Steve Martin said? "Well, EXCUUUUSE ME!" Karen and I know it could be worse; we get that but when your life is fine, when you have nothing to really complain about, then having cancer is the worst. I really don't want to know how bad my life has to be before people quit saying, "Well, you know...". I just want them to quit saying it, period.
'Long as I am on a roll, here's another great one. I had a friend tell me something like this. "There's good in the world and there's bad in the world and somebody has to have the bad stuff and you just have the bad stuff." Man, you gotta love that. What complete and utter BS. I suspect there are still a few people that would like to see my head on a plate but the truth is, I have worked damned hard to be a better person and turn my life around and I don't want any bad stuff. I have had enough bad stuff in my life, thank you very much. I have held my dead infant daughter in my arms. I have already had one go-round with cancer. I have survived depression. Why can't the really and truly bad people get the bad stuff? I have had more than my share. Let someone else carry this load and see how happy they feel.
Notice the last word in the last sentence: FEEL. That's the key word. We don't need to be asked "How are you?" We need to be asked "How do you feel?" And then stand back and listen. In our house the rule is: Don't ask the question if you don't want to know the answer. When we tell you how we feel and what we feel, you will know how we are.
Let's drop the cliches', no matter how well-intentioned. Say something real and meaningful. When we need help, then say something helpful. How will you know when to say something helpful and when to just sit and listen? You won't know: unless you ask or we tell you. This is the real deal and we did not want it in our lives and it is as bad as it needs to be.
"Have a nice day."
Peace,
Mike
Just say, "IT SUCKS"
If I had my say I'd stay under the covers today and pull Mike in with me. We'd talk, play scrabble, order in pizza. Maybe, watch a funny movie on Netflix and talk about getting outside and going for a walk but never get around to implementing the idea. But that's not going to happen today. I'm already out of bed and Mike's gone to work. I just like the idea of it. I like the idea of hiding.
Yesterday was a tough day for me and I can't exactly finger why. Maybe just a composite of a bunch of things? Maybe, as we are moving towards imminent treatment and the side effects and more life changes, maybe, it just feels more real?
Personally, I've taken a two week break from acceptance. It's been a nice vacation on the river denial. Yesterday and today it feels like "vacation letdown." You know what I'm talking about. You've been away from it all for a few weeks. Sun, beach, water, fresh air. Then it's time to head for home and you start dragging your feet. If you are Mike and Karen you head for home by first going in the opposite direction. It's kind of our way of prolonging re-entry. It's like ascending from the deep slowly so as not to get the bends. So, you finally head home and as you get closer your belly starts to ache as you think about all the things which will need doing. You start wondering what went wrong while you were away and how much work has piled onto your desk. You pull in the drive and the garage door won't go up, something died in your fridge, the dogs ate their dog house and nobody watered your house plants. The phone is blinking and there are a zillion messages to be answered; half too late to do anything about and the rest need tending to in the next few days. Argh, why'd you even leave in the first place?
Vacation letdown, aka vacation punishment.
Well, here I am on the other side of vacation and feeling a little....what? There's so many emotions all tangled up I can't separate them into individual items. If I could I would and then I could deal with them one by one. I tried to talk about what I was feeling yesterday but I think since I can't be clear in my head about what I'm feeling I can't be clear with my words and that makes it difficult for others to help me.
I know my thinking right now is not rational. I've got a lot of emotion in the way. I understand the difference between rational and emotional thinking. I can even watch it going on in my head. But I'm stuck in EMO mode right now and if I can't get past that, if I can't let it out and get it out of the way, I can't get to rational! It's frustrating to tears.
Yesterday, I cried my way to work. I don't know where it came from. I'm not a crier. My motto used to be "Die before Cry." But there I was stopped in road construction crying. I was thin and afraid yesterday. I needed comfort but I'm not sure what kind of comfort. It might have been the kind where someone just listens and says, "God, Karen, that sucks. It's not fair. You have every right to be ______________ (whatever that emotion was). Instead, I heard: settle down, it could be worse, you'll get through this, it's not that big of a deal, you need to focus, think about something else, you'll still have Mike in the end...(the end of what?)
Well, no shit! It doesn't take a fucking genius to know that. Yeah, I'll have Mike when it's all done but we are walking through hell to get to that part. And I don't want sunshine blown up my skirt. I don't want people telling me that we are lucky because I don't feel lucky. I don't want to be told how I should think about this, I KNOW how I should think about it. I know that nobody has said the word terminal and that LOTS of people have cancer and live with it and act like it's no big deal. And maybe we'll get to that point too but right now it's a big fucking deal. And it sucks and I want someone who doesn't feel compelled to fix this right now to tell me....God Karen, that sucks.
Peace,
Karen
Yesterday was a tough day for me and I can't exactly finger why. Maybe just a composite of a bunch of things? Maybe, as we are moving towards imminent treatment and the side effects and more life changes, maybe, it just feels more real?
Personally, I've taken a two week break from acceptance. It's been a nice vacation on the river denial. Yesterday and today it feels like "vacation letdown." You know what I'm talking about. You've been away from it all for a few weeks. Sun, beach, water, fresh air. Then it's time to head for home and you start dragging your feet. If you are Mike and Karen you head for home by first going in the opposite direction. It's kind of our way of prolonging re-entry. It's like ascending from the deep slowly so as not to get the bends. So, you finally head home and as you get closer your belly starts to ache as you think about all the things which will need doing. You start wondering what went wrong while you were away and how much work has piled onto your desk. You pull in the drive and the garage door won't go up, something died in your fridge, the dogs ate their dog house and nobody watered your house plants. The phone is blinking and there are a zillion messages to be answered; half too late to do anything about and the rest need tending to in the next few days. Argh, why'd you even leave in the first place?
Vacation letdown, aka vacation punishment.
Well, here I am on the other side of vacation and feeling a little....what? There's so many emotions all tangled up I can't separate them into individual items. If I could I would and then I could deal with them one by one. I tried to talk about what I was feeling yesterday but I think since I can't be clear in my head about what I'm feeling I can't be clear with my words and that makes it difficult for others to help me.
I know my thinking right now is not rational. I've got a lot of emotion in the way. I understand the difference between rational and emotional thinking. I can even watch it going on in my head. But I'm stuck in EMO mode right now and if I can't get past that, if I can't let it out and get it out of the way, I can't get to rational! It's frustrating to tears.
Yesterday, I cried my way to work. I don't know where it came from. I'm not a crier. My motto used to be "Die before Cry." But there I was stopped in road construction crying. I was thin and afraid yesterday. I needed comfort but I'm not sure what kind of comfort. It might have been the kind where someone just listens and says, "God, Karen, that sucks. It's not fair. You have every right to be ______________ (whatever that emotion was). Instead, I heard: settle down, it could be worse, you'll get through this, it's not that big of a deal, you need to focus, think about something else, you'll still have Mike in the end...(the end of what?)
Well, no shit! It doesn't take a fucking genius to know that. Yeah, I'll have Mike when it's all done but we are walking through hell to get to that part. And I don't want sunshine blown up my skirt. I don't want people telling me that we are lucky because I don't feel lucky. I don't want to be told how I should think about this, I KNOW how I should think about it. I know that nobody has said the word terminal and that LOTS of people have cancer and live with it and act like it's no big deal. And maybe we'll get to that point too but right now it's a big fucking deal. And it sucks and I want someone who doesn't feel compelled to fix this right now to tell me....God Karen, that sucks.
Peace,
Karen
Monday, July 6, 2009
Catch and Release
(Preface: I wrote the following blog in my journal on Sunday morning but have not had time to post it till tonight. Chronologically, it would have come before "Any Port in a Storm".)
(Sunday, July 5th, 2009. 10:30 am, WJF)
My wrist, my left wrist, my writing hand, is already sore.
Pulling and twisting against the tension of the garden hose to rinse sand from our wading boots, aggravated what has been a chronic inflammation these past 2 or 3 weeks; maybe even the past month.
With the windows open and shaded, the breeze moving through the living room is cool. We ate breakfast in the shaded breeze and I watched the distant field for the rest the view brought to my eyes. Karen wondered where the horses were that pastured there last summer. How would we now what happened to the gray, and the brown, horses? Certainly they brought movement and color and obvious life but for me, this morning, the field is just restful for my eyes.
The sky is full of hot July blue and the grasses in the distance wear the coppery tarnish of a field gone wild with sunlight and neglect; gone wild with freedom to grow, to be a field and nothing else.
The morning is quiet- a few sparrows; no mowers or wheelers or leftover firecrackers, no dogs chopping the stillness up into hoarse, bite-size chunks. The pine plantation is stippled with black shadows, giving depth to offset the flatness that comes with distance.
Last night we fished the river again. Two nights in a row we waded the slow cool waters trying to lure trout up from the depths. We fished with our friends, Jeff and Cindi. Together we went down to the river to look first, to gauge the water- the speed, the clarity, the depth; all relative. And we looked for rises: there were none. Just the surface dimpling of chubs. And maybe we just went to look at life, at some living thing. flowing by, inviting and somehow, yet, out of reach.
Out of reach? Maybe.
Fishing for trout is a reason to visit a river. One should not need a reason and I am glad Karen and I visit these waters just as often without a rod and waders. I did not need a trout as much as I needed to be in the wild, to be out of walls and alarms and people and work. I needed to be out of, away from, that part of me that takes up too much of my life and I cannot help feeling just a bit smug because I got what I asked for: two nights on the river.
Karen almost got what she always asks for because she found a perfect otter print in the soft mud at the water's edge. Seems like if we aren't looking for trout we are looking for otters. Either one is a good enough reason for coming back again and again and again. They are both symbols of fluid grace and strength, flashing speed and vitality. One, at least, will mock you out loud. The other just splashes your fly away.
Karen also got the deer. She said it was my deer because the other day I mentioned a red doe stepping from the wall of green grass, into the river, to drink. The deer Karen got was a buck, velvet antlers beginning to swell into forks; large liquid eyes peering down a long red nose at the yellow-shirted intruder in the water. From three rod lengths away he regarded my wife, moving his head from side to side and up and down, trying to gain a measure of her depth- perhaps to see what lurked behind her. For her part, Karen's intent was pure. No deer yet has reason to fear my wife armed with a flyrod in her hand.
When the trees on the horizon grew tall enough to hide the sun and a slight chill filled the air in the river bottom I lost a trout. In a deep hole where the high spring run-off scoured a cavity under a bankside willow, a trout, or as we found out later, several trout, spend their days waiting for the cool of evening, I caught and promptly lost a large, heavy, strong rainbow. Shortly after that Karen came up on her way back to the van. The twilight was growing into darkness and I hooked and lost another trout. Possibly the same one, or a brother perhaps; we could not tell but my evening was complete. I caught, I lost, I laughed.
That was the first night. Last night I caught and released another fat rainbow deep in the shadows of overhanging willows and alders. The light was so dim I cut the line to release him rather than risk injuring him to remove the fly. I worry, always, about letting them go when they are hooked deep. The struggle is hard on them and at this time of year the warmer water is stress enough. I pray his strength kept him alive for he was strong. He pulled my old bamboo into a stiff arc and dug for the bottom and hung on in a way known only to trout. I pried him against his will but maybe at that point it was a matter of my pride? Like the previous night I could have lost him and that would have been ok. But sometimes we have to touch that wild we seek; sometimes we have to hold it a moment before letting it slide back into the dark waters.
Peace friends,
Pinch those barbs down,
Mike
(Sunday, July 5th, 2009. 10:30 am, WJF)
My wrist, my left wrist, my writing hand, is already sore.
Pulling and twisting against the tension of the garden hose to rinse sand from our wading boots, aggravated what has been a chronic inflammation these past 2 or 3 weeks; maybe even the past month.
With the windows open and shaded, the breeze moving through the living room is cool. We ate breakfast in the shaded breeze and I watched the distant field for the rest the view brought to my eyes. Karen wondered where the horses were that pastured there last summer. How would we now what happened to the gray, and the brown, horses? Certainly they brought movement and color and obvious life but for me, this morning, the field is just restful for my eyes.
The sky is full of hot July blue and the grasses in the distance wear the coppery tarnish of a field gone wild with sunlight and neglect; gone wild with freedom to grow, to be a field and nothing else.
The morning is quiet- a few sparrows; no mowers or wheelers or leftover firecrackers, no dogs chopping the stillness up into hoarse, bite-size chunks. The pine plantation is stippled with black shadows, giving depth to offset the flatness that comes with distance.
Last night we fished the river again. Two nights in a row we waded the slow cool waters trying to lure trout up from the depths. We fished with our friends, Jeff and Cindi. Together we went down to the river to look first, to gauge the water- the speed, the clarity, the depth; all relative. And we looked for rises: there were none. Just the surface dimpling of chubs. And maybe we just went to look at life, at some living thing. flowing by, inviting and somehow, yet, out of reach.
Out of reach? Maybe.
Fishing for trout is a reason to visit a river. One should not need a reason and I am glad Karen and I visit these waters just as often without a rod and waders. I did not need a trout as much as I needed to be in the wild, to be out of walls and alarms and people and work. I needed to be out of, away from, that part of me that takes up too much of my life and I cannot help feeling just a bit smug because I got what I asked for: two nights on the river.
Karen almost got what she always asks for because she found a perfect otter print in the soft mud at the water's edge. Seems like if we aren't looking for trout we are looking for otters. Either one is a good enough reason for coming back again and again and again. They are both symbols of fluid grace and strength, flashing speed and vitality. One, at least, will mock you out loud. The other just splashes your fly away.
Karen also got the deer. She said it was my deer because the other day I mentioned a red doe stepping from the wall of green grass, into the river, to drink. The deer Karen got was a buck, velvet antlers beginning to swell into forks; large liquid eyes peering down a long red nose at the yellow-shirted intruder in the water. From three rod lengths away he regarded my wife, moving his head from side to side and up and down, trying to gain a measure of her depth- perhaps to see what lurked behind her. For her part, Karen's intent was pure. No deer yet has reason to fear my wife armed with a flyrod in her hand.
When the trees on the horizon grew tall enough to hide the sun and a slight chill filled the air in the river bottom I lost a trout. In a deep hole where the high spring run-off scoured a cavity under a bankside willow, a trout, or as we found out later, several trout, spend their days waiting for the cool of evening, I caught and promptly lost a large, heavy, strong rainbow. Shortly after that Karen came up on her way back to the van. The twilight was growing into darkness and I hooked and lost another trout. Possibly the same one, or a brother perhaps; we could not tell but my evening was complete. I caught, I lost, I laughed.
That was the first night. Last night I caught and released another fat rainbow deep in the shadows of overhanging willows and alders. The light was so dim I cut the line to release him rather than risk injuring him to remove the fly. I worry, always, about letting them go when they are hooked deep. The struggle is hard on them and at this time of year the warmer water is stress enough. I pray his strength kept him alive for he was strong. He pulled my old bamboo into a stiff arc and dug for the bottom and hung on in a way known only to trout. I pried him against his will but maybe at that point it was a matter of my pride? Like the previous night I could have lost him and that would have been ok. But sometimes we have to touch that wild we seek; sometimes we have to hold it a moment before letting it slide back into the dark waters.
Peace friends,
Pinch those barbs down,
Mike
Any Port in a Storm
Just a quick update: more will follow when have a few more details. Plus, I believe Karen will want to update the cast of characters.
We just returned home from our visit to Fargo. I guess it is kind of mixed blessing that I can find my way to the Roger Maris Cancer Center, blindfolded. Karen appreciated not having to naviguess, like we do in the Cities. As much as RM is a great institution, I never really wanted to visit the place as a patient, ever again. So my eyes wanted to leak a bit as I made the turns along the tree-lined avenues that led us to a new world. The coffee machine in the alcove off the lobby, still made an "ok" pre-meditated brew, and the little donut balls, tasted homemade. At 53, I still feel like a youngster in the crowd that waits in the lobby for their names to be called.
Dr. Shahidi has the smallest hands I have ever seen on a physician. Karen said she kept waiting for him to make eye contact. He was able to answer some basic questions relating to my treatment. For those playing along at home, my cancer is a T3,N1, which is a stage III B cancer. I will be the fortunate recipient of a 'port'; an implant in my chest, for the administration of my chemo. I will be having chemo, "24/7" during my radiation. My radiation treatment will be 5 days a week, for 5 weeks. Sometime this week or perhaps early next week, I will have the port surgically implanted in my chest. It will be an access point for the little pump I have to wear for those 5 weeks. I will be carrying my 'medicine bag' all the time. Maybe I can add my own special touches; personalizing it, if you will. That whole 'port thing' will be a learning experience, with its' own special potential for problems but really is an effective way to administer meds over a long period of time. I will have the port all the way through the chemo that will follow my surgery.
So, to summarize, we are closer than ever to actually beginning treatment. I should know more tomorrow, or the next day, in terms of when I have the port installed. And I still have my radiation oncology visit set up for Friday.
Peace,
Mike
We just returned home from our visit to Fargo. I guess it is kind of mixed blessing that I can find my way to the Roger Maris Cancer Center, blindfolded. Karen appreciated not having to naviguess, like we do in the Cities. As much as RM is a great institution, I never really wanted to visit the place as a patient, ever again. So my eyes wanted to leak a bit as I made the turns along the tree-lined avenues that led us to a new world. The coffee machine in the alcove off the lobby, still made an "ok" pre-meditated brew, and the little donut balls, tasted homemade. At 53, I still feel like a youngster in the crowd that waits in the lobby for their names to be called.
Dr. Shahidi has the smallest hands I have ever seen on a physician. Karen said she kept waiting for him to make eye contact. He was able to answer some basic questions relating to my treatment. For those playing along at home, my cancer is a T3,N1, which is a stage III B cancer. I will be the fortunate recipient of a 'port'; an implant in my chest, for the administration of my chemo. I will be having chemo, "24/7" during my radiation. My radiation treatment will be 5 days a week, for 5 weeks. Sometime this week or perhaps early next week, I will have the port surgically implanted in my chest. It will be an access point for the little pump I have to wear for those 5 weeks. I will be carrying my 'medicine bag' all the time. Maybe I can add my own special touches; personalizing it, if you will. That whole 'port thing' will be a learning experience, with its' own special potential for problems but really is an effective way to administer meds over a long period of time. I will have the port all the way through the chemo that will follow my surgery.
So, to summarize, we are closer than ever to actually beginning treatment. I should know more tomorrow, or the next day, in terms of when I have the port installed. And I still have my radiation oncology visit set up for Friday.
Peace,
Mike
Friday, July 3, 2009
Straight Pipes and Dirt Bikes
They suck. Period.
It is 3:50 am and I am awake because of some testosterone impaired youths and their right to run up and down the new blacktop, squealing tires and revving their motors. Then we have the dirtbikes buzzing up and down the ditch. Mind you, this is taking place about 1/2 mile away but in the still of the night, with open windows, the noise carries very well. This is exactly the kind of noise issue that had me calling the sheriff at 2:30 am, when a barking dog woke me a couple weeks ago. I probably should have called tonight. I am not sure why I didn't. I guess I thought the whole thing would turn into a Dukes of Hazard chase scene. YeeHaw!
It must be time to consider getting some meds to help me sleep; or to stay asleep once I get there. Not all sounds in the night are disturbing. Wolves howling is something I like to hear; coyotes too. Living in the tipi we heard the calls of trumpeter swans as they passed overhead, the mating calls of the saw-whet owls, the roaring of the ice lions. We also heard mice running amok, the distant barking of dogs with nothing to do and the furtive rustling of the canvas door as a skunk paid us a visit.
If what they say about radiation is true, then getting good sleep is going to become more and more important as my treatment progresses. Ok, that is assuming I actually get treatment. The point is, I don't deal well with with the kind of disturbances that woke me a little while ago. I just don't get the whole idea of making noise in the middle of the night just for fun. The mean -minded part of me wants to find the people that woke me and... Nope, I just can't tell you. I guess I was born without the genes that find loud motors appealing. That goes for 'motor sports' in general.
The night, what is left of it, is quiet and now that I am done venting, maybe the soft buzzing of the vesper sparrows and the chirping of the birds as they wake, will help me get back to sleep. Wait, if the birds are beginning to sing that means night is over soon and ...Crap.
Good night or good morning, whichever.
Peace,
Mike
It is 3:50 am and I am awake because of some testosterone impaired youths and their right to run up and down the new blacktop, squealing tires and revving their motors. Then we have the dirtbikes buzzing up and down the ditch. Mind you, this is taking place about 1/2 mile away but in the still of the night, with open windows, the noise carries very well. This is exactly the kind of noise issue that had me calling the sheriff at 2:30 am, when a barking dog woke me a couple weeks ago. I probably should have called tonight. I am not sure why I didn't. I guess I thought the whole thing would turn into a Dukes of Hazard chase scene. YeeHaw!
It must be time to consider getting some meds to help me sleep; or to stay asleep once I get there. Not all sounds in the night are disturbing. Wolves howling is something I like to hear; coyotes too. Living in the tipi we heard the calls of trumpeter swans as they passed overhead, the mating calls of the saw-whet owls, the roaring of the ice lions. We also heard mice running amok, the distant barking of dogs with nothing to do and the furtive rustling of the canvas door as a skunk paid us a visit.
If what they say about radiation is true, then getting good sleep is going to become more and more important as my treatment progresses. Ok, that is assuming I actually get treatment. The point is, I don't deal well with with the kind of disturbances that woke me a little while ago. I just don't get the whole idea of making noise in the middle of the night just for fun. The mean -minded part of me wants to find the people that woke me and... Nope, I just can't tell you. I guess I was born without the genes that find loud motors appealing. That goes for 'motor sports' in general.
The night, what is left of it, is quiet and now that I am done venting, maybe the soft buzzing of the vesper sparrows and the chirping of the birds as they wake, will help me get back to sleep. Wait, if the birds are beginning to sing that means night is over soon and ...Crap.
Good night or good morning, whichever.
Peace,
Mike
Wednesday, July 1, 2009
"A Hole in My Bucket"
Tonight we are both kind of cranky; nothing really bad, just kind of wanting answers and energy and our old life back.
I am getting more tired, more often and I wonder if this is what life is like with a big parasite inside you. I have to bring more and more food to work to make it through the day or I run out of energy. Lisa told Karen that was due to mal-absorption in my colon. No matter how much I eat my bucket always has a hole in it. I am one of those people that can pretty much eat breakfast at 5:30 when I get up. Then I can eat it again about 9:30 and still be hungry at lunch time. By the time I get home after work I am hungry again and so tired all I want is a nap.
This has me worried. I haven't started treatment yet (I won't go there tonight) and I am already tired. Fatigue is one of the major effects of radiation; fatigue that isn't relieved with sleep. I am afraid I will be in the hole before I even get going. And when I am tired I have more difficulty keeping my spirits up. It is hard to be enthused about doing much or starting projects. I know I should not be putting life on hold but I sure have difficulty generating enough mental and physical energy to do the things I used to do without thinking. I feel like I should be doing something for exercise because as we all know, exercise generates energy and makes us feel better. I have given up on biking to work this summer. I did it last year and usually liked it but with my energy deficit it is not happening this year. Most evenings we are both so tired that even getting out to paddle is something we put off till the weekend.
We just got a couple informational books from the Roger Maris Cancer Center. The really useful one is so intense I just had to put it down. I will try to read it later because I am pretty sure I will come away with new knowledge and new questions to ask the oncologist. About a month ago I met a woman whose husband just went through rectal cancer and I am planning to send them my questions. No one knows the truth of this experience till they walk the walk and I figure Dave and Ann could be great resources.
We are so hoping that next week will be a turning point in getting treatment started. I don't know what I have to do- take hostages? Getting a case manager assigned to us was huge. I hope she can help me deal with Fairview in a more productive manner. I don't understand how a 'world-class' facility can drop people like they dropped us. I have no qualms about the surgeon or other doctors or nurses. I am beginning to think the patient care part is run by a paralyzed, blind, deaf mute. Did I say that? Was I rude? Tough. Like I said, it is kind of crabby out tonight.
The evening is beautiful; calm and warm. No wind today and temps in the 70's - a perfect summer day. I think, -no,- I know, we will be going to the river this weekend. Twice if I have my way. I don't need to catch a trout as much as I just need to be out in the wild, on the water and away from people and the whole 4th of July hoopla. In fact, right now is the perfect time to be in the river. After the past couple days the water wouldn't be too warm. A red doe might step into the river to drink and get out of the mosquitoes for a while. And just when the sun sets and the bats can't decide between the mosquitoes and your fly, the trout will begin to rise...
Pinch down your barbs.
Peace,
Mike
I am getting more tired, more often and I wonder if this is what life is like with a big parasite inside you. I have to bring more and more food to work to make it through the day or I run out of energy. Lisa told Karen that was due to mal-absorption in my colon. No matter how much I eat my bucket always has a hole in it. I am one of those people that can pretty much eat breakfast at 5:30 when I get up. Then I can eat it again about 9:30 and still be hungry at lunch time. By the time I get home after work I am hungry again and so tired all I want is a nap.
This has me worried. I haven't started treatment yet (I won't go there tonight) and I am already tired. Fatigue is one of the major effects of radiation; fatigue that isn't relieved with sleep. I am afraid I will be in the hole before I even get going. And when I am tired I have more difficulty keeping my spirits up. It is hard to be enthused about doing much or starting projects. I know I should not be putting life on hold but I sure have difficulty generating enough mental and physical energy to do the things I used to do without thinking. I feel like I should be doing something for exercise because as we all know, exercise generates energy and makes us feel better. I have given up on biking to work this summer. I did it last year and usually liked it but with my energy deficit it is not happening this year. Most evenings we are both so tired that even getting out to paddle is something we put off till the weekend.
We just got a couple informational books from the Roger Maris Cancer Center. The really useful one is so intense I just had to put it down. I will try to read it later because I am pretty sure I will come away with new knowledge and new questions to ask the oncologist. About a month ago I met a woman whose husband just went through rectal cancer and I am planning to send them my questions. No one knows the truth of this experience till they walk the walk and I figure Dave and Ann could be great resources.
We are so hoping that next week will be a turning point in getting treatment started. I don't know what I have to do- take hostages? Getting a case manager assigned to us was huge. I hope she can help me deal with Fairview in a more productive manner. I don't understand how a 'world-class' facility can drop people like they dropped us. I have no qualms about the surgeon or other doctors or nurses. I am beginning to think the patient care part is run by a paralyzed, blind, deaf mute. Did I say that? Was I rude? Tough. Like I said, it is kind of crabby out tonight.
The evening is beautiful; calm and warm. No wind today and temps in the 70's - a perfect summer day. I think, -no,- I know, we will be going to the river this weekend. Twice if I have my way. I don't need to catch a trout as much as I just need to be out in the wild, on the water and away from people and the whole 4th of July hoopla. In fact, right now is the perfect time to be in the river. After the past couple days the water wouldn't be too warm. A red doe might step into the river to drink and get out of the mosquitoes for a while. And just when the sun sets and the bats can't decide between the mosquitoes and your fly, the trout will begin to rise...
Pinch down your barbs.
Peace,
Mike
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