This is from a book called The Cancer Poetry Project, edited by Karin B. Miller. I don't have the book yet, but we saw this in a magazine down at the radiation lab. It made me want to jump up and shout when I read it.
"The Cancer Patient Talks Back" (excerpt)
by Molly Redmond
No.
I don't want to hear about your uncle
and how he lived three years
after being diagnosed.
And I don't want to hear
how many times your cousin threw up when she had
chemo.
Nor how your neighbor's baby
had twelve toes
maybe from radiation.
...the only person I want to hear about
is your Grandma Ruth,
who was diagnosed at fifty
and died at ninety,
skydiving.
Otherwise,
hold your tongue.
Wednesday, March 25, 2009
Thursday, March 19, 2009
Wednesday, March 18, 2009
Breathing in and breathing out
Watch the movie Australia. Afterwards research Australia's lost generation and read about the relocation of the aboriginals and the mixed breed children. The research will give more depth and meaning to the story.
I mention the movie because of a particular scene that touched me. An aboriginal man has been locked in a jail for days maybe weeks. The Japanese (WWII) begin bombing the city of Darwin where he is being held. The air strike is wiping out the city and the guards receive an order to release all the prisoners from their cells. There is chaos everywhere. All the white prisoners bolt from their cells into the night running for their lives and being caught up in the carnage. The old aboriginal man simple walks out of his cell and begins to look around. He watches the bombs exploding around him, the fires, the planes circling overhead, the mass destruction taking place in split second time. He never looks alarmed or afraid he just observes. At first you think he might just be ignorant of such things but then you realize that there is a very deep wisdom in his behavior.
I thought about this movie scene for days. How he quietly walked through the city never seeking shelter or help. Something about it seemed familiar to me and later in the week I spoke to Clem about it. We have been locked in a cell for seven months now. Bombs have been falling all around us. Every day we see illness, dying, and people struggling for their lives. Like the Aboriginal man we too have developed a calm observant acceptance of our situation.
It is much like a beautiful patina that develops on a piece of metal that has spent years being assaulted by the elements. The last seven months have changed us and what we have now is even more beautiful that what we had before. Because of our shared adversity we seem to be living in our own alternative reality. Personally I do not feel a part of the world as I knew it before. So many things seem petty and unimportant. I have spent the last few cold dark months of winter attempting to free myself of fear, anger, and sadness in order to reach a place where I could get up every day and be a person of strength and hope for my husband to lean on. I have not always succeeded but I have tried.
I have rejected/pushed people from my life in order to create an environment where Clem and I could be in a quiet, calm, and healing place. I have thought about the people that mean so much to me everyday but I could not find words to communicate to them what was happening. Consequently I have not read email, not answered texts, or phone calls for weeks maybe months now. I would like to say that I am sorry for this but I can't. I had to have the solitude.
This post is my attempt at letting my friends and family know that I am and that we are okay. We are actually better than okay. Clem's health is a day by day thing still but our heads and our hearts are rock solid. All of your words of encouragement and love have fueled us on and have meant much to us. He is grunting through some tough territory right now and all my attention is on him so I may not post again for a while. Just know that we love you all and know that you love us too. In our alternative reality that means everything.
Pam
I mention the movie because of a particular scene that touched me. An aboriginal man has been locked in a jail for days maybe weeks. The Japanese (WWII) begin bombing the city of Darwin where he is being held. The air strike is wiping out the city and the guards receive an order to release all the prisoners from their cells. There is chaos everywhere. All the white prisoners bolt from their cells into the night running for their lives and being caught up in the carnage. The old aboriginal man simple walks out of his cell and begins to look around. He watches the bombs exploding around him, the fires, the planes circling overhead, the mass destruction taking place in split second time. He never looks alarmed or afraid he just observes. At first you think he might just be ignorant of such things but then you realize that there is a very deep wisdom in his behavior.
I thought about this movie scene for days. How he quietly walked through the city never seeking shelter or help. Something about it seemed familiar to me and later in the week I spoke to Clem about it. We have been locked in a cell for seven months now. Bombs have been falling all around us. Every day we see illness, dying, and people struggling for their lives. Like the Aboriginal man we too have developed a calm observant acceptance of our situation.
It is much like a beautiful patina that develops on a piece of metal that has spent years being assaulted by the elements. The last seven months have changed us and what we have now is even more beautiful that what we had before. Because of our shared adversity we seem to be living in our own alternative reality. Personally I do not feel a part of the world as I knew it before. So many things seem petty and unimportant. I have spent the last few cold dark months of winter attempting to free myself of fear, anger, and sadness in order to reach a place where I could get up every day and be a person of strength and hope for my husband to lean on. I have not always succeeded but I have tried.
I have rejected/pushed people from my life in order to create an environment where Clem and I could be in a quiet, calm, and healing place. I have thought about the people that mean so much to me everyday but I could not find words to communicate to them what was happening. Consequently I have not read email, not answered texts, or phone calls for weeks maybe months now. I would like to say that I am sorry for this but I can't. I had to have the solitude.
This post is my attempt at letting my friends and family know that I am and that we are okay. We are actually better than okay. Clem's health is a day by day thing still but our heads and our hearts are rock solid. All of your words of encouragement and love have fueled us on and have meant much to us. He is grunting through some tough territory right now and all my attention is on him so I may not post again for a while. Just know that we love you all and know that you love us too. In our alternative reality that means everything.
Pam
Sunday, March 15, 2009
False Summits
Sorry guys, I thought Pam had posted something here recently. It's been a very strange week.
Tonight's topic is from a mountaineering metaphor, something known as a "false summit." When climbing a mountain, it's common to see only the shoulder of the mountain and think that it's the summit (the actual summit is hidden from view behind the shoulder.) It's hard for the climber once the actual peak comes to view to learn that the journey will be just a little bit longer. Even so, steady perseverance overcomes such mental setbacks and wins the prize.
Medically speaking the liver surgery was my biggest hurdle. If that hadn't had the somewhat unexpected outcome of complete success none of the other stuff would have mattered. Now that is over and working great, but there is still a lot of hill left to climb. I'm in week three of the radiation treatment, and feeling the side effects now. They include diarrhea, burned or tender skin, fatigue, and falling blood platelet counts. Three more weeks of radiation to go and then it should be behind me. It's no fun, but not all that bad so far.
Last Monday I met with the surgeon who will do my colon resection. He wants to wait for a period of a few weeks for me to recover a bit after radiation before doing his thing, which ought to happen about the first part of May. Though we'd hoped for a relatively easy procedure, it turns out that this one might be more than just a walk in the park. He won't know until he's in there and actually hands-on, but he spoke of things like having to reconstruct a pouch out of intestine to simulate a colon, the possibility of nerve damage affecting sexual function, having a temporary (but hopefully not permanent) colostomy bag, and several weeks of recovery before things get back to normal. I suppose that is "relatively" easy compared to the dire things that are associated with a massive liver resection.
But wait! There's more! After all of that, the oncologist wants to give me seven more weeks of intense chemo "just to be sure". That's the heavy dose kind, like I had before, with the effects such as cold sensitivity, long-lasting numbness in hands and feet, horrible-tasting mouth, and a grey, death-like pallor. Lovely.
With all of that, the goal here is a once-and-for-all cure, and that is what keeps me going. They said that this would be long and hard. Even with this latest extension in the treatment, I'd much rather do it once and do it now than to have this come back at some later time. That's the attitude I have when I tell them to "bring it on" and let's beat this thing and put it down for good.
Thank you all for your attention and support. It means the world to me.
Tonight's topic is from a mountaineering metaphor, something known as a "false summit." When climbing a mountain, it's common to see only the shoulder of the mountain and think that it's the summit (the actual summit is hidden from view behind the shoulder.) It's hard for the climber once the actual peak comes to view to learn that the journey will be just a little bit longer. Even so, steady perseverance overcomes such mental setbacks and wins the prize.
Medically speaking the liver surgery was my biggest hurdle. If that hadn't had the somewhat unexpected outcome of complete success none of the other stuff would have mattered. Now that is over and working great, but there is still a lot of hill left to climb. I'm in week three of the radiation treatment, and feeling the side effects now. They include diarrhea, burned or tender skin, fatigue, and falling blood platelet counts. Three more weeks of radiation to go and then it should be behind me. It's no fun, but not all that bad so far.
Last Monday I met with the surgeon who will do my colon resection. He wants to wait for a period of a few weeks for me to recover a bit after radiation before doing his thing, which ought to happen about the first part of May. Though we'd hoped for a relatively easy procedure, it turns out that this one might be more than just a walk in the park. He won't know until he's in there and actually hands-on, but he spoke of things like having to reconstruct a pouch out of intestine to simulate a colon, the possibility of nerve damage affecting sexual function, having a temporary (but hopefully not permanent) colostomy bag, and several weeks of recovery before things get back to normal. I suppose that is "relatively" easy compared to the dire things that are associated with a massive liver resection.
But wait! There's more! After all of that, the oncologist wants to give me seven more weeks of intense chemo "just to be sure". That's the heavy dose kind, like I had before, with the effects such as cold sensitivity, long-lasting numbness in hands and feet, horrible-tasting mouth, and a grey, death-like pallor. Lovely.
With all of that, the goal here is a once-and-for-all cure, and that is what keeps me going. They said that this would be long and hard. Even with this latest extension in the treatment, I'd much rather do it once and do it now than to have this come back at some later time. That's the attitude I have when I tell them to "bring it on" and let's beat this thing and put it down for good.
Thank you all for your attention and support. It means the world to me.
Wednesday, February 25, 2009
New Tats!
Three days into the next step now, and I have some idea of what it will entail. The perpetual chemo pump is annoying but not a big deal. The daily radiation treatments haven't had any side effects yet, but that's not expected for a couple more weeks.
The funniest aspect of this round has been my new tattoos! They put some marks on my behind with an ink pen, and then added three small "dot" tattoos as a permanent alignment device. I'm bragging about it, calling it my "tramp stamp" tattoo. In reality they are no more than freckle-sized. Is that funny or what?
Mostly, I feel a little bit tired. Perhaps it's just an excuse to take a long nap every afternoon, but that's what feels good to me.
That's about it for now.
Driving on,
Clem
Thursday, February 19, 2009
Monkey Butt Blues
We have a plan! The latest doctor, a radiation oncologist, met with me this week and developed a treatment plan for the next round. We will continue the aggressive treatment plan that has worked so well so far, and turn up the "heat" with some radiation, too. The good news is that the side effects are supposed to be less than the ones I've already had. If that's as bad as it gets, then I can handle it. They said the worst part of the radiation was that I might get some skin irritation. Looks like I'll be singing the "Monkey Butt Blues."
Pam, however, may "bust a gut" laughing at me. They painted target markings on my butt to aid in the aiming of the radiation beam. She is having visions of what they might say down at the nude gay beach. Fortunately, our local one is closed for the winter. ;)
For the next five weeks, starting on the 23rd, I'll be taking a low-level but continuous dose of the 5FU chemotherapy via a pump, combined with a 15-minute session with the radiologist every weekday. The goal is to shrink the colon tumor enough that the surgery on it will be easy and successful, and to eliminate worries about any spreading cancer to the lymph nodes near the colon.
Some time shortly after that, around the beginning of April, I'll do the last surgery. With luck, it won't be half as hard to recover from as the liver surgery. It involves a small, hand-sized incision vertically below my belly button. With that, I'll be cancer-free and working toward normal life. We'll wrap up with some more chemo treatment just to make absolutely sure that it's "gone gone" and be done with the whole thing some time in June.
Woo hoo!
I'm keeping my fingers crossed and my positive energy up here on the final phases, looking forward to being cured.
Cheers,
Clem
Pam, however, may "bust a gut" laughing at me. They painted target markings on my butt to aid in the aiming of the radiation beam. She is having visions of what they might say down at the nude gay beach. Fortunately, our local one is closed for the winter. ;)
For the next five weeks, starting on the 23rd, I'll be taking a low-level but continuous dose of the 5FU chemotherapy via a pump, combined with a 15-minute session with the radiologist every weekday. The goal is to shrink the colon tumor enough that the surgery on it will be easy and successful, and to eliminate worries about any spreading cancer to the lymph nodes near the colon.
Some time shortly after that, around the beginning of April, I'll do the last surgery. With luck, it won't be half as hard to recover from as the liver surgery. It involves a small, hand-sized incision vertically below my belly button. With that, I'll be cancer-free and working toward normal life. We'll wrap up with some more chemo treatment just to make absolutely sure that it's "gone gone" and be done with the whole thing some time in June.
Woo hoo!
I'm keeping my fingers crossed and my positive energy up here on the final phases, looking forward to being cured.
Cheers,
Clem
Tuesday, February 10, 2009
CEA Markers
The doctor just called. If it was worth him calling me, it's worth me writing to you.
They did some lab work yesterday while I was there (of course) and the news was good. There's a chemical in the blood that indicates cancer is growing, it's called the CEA marker. Normal range is less than 5. Two months ago mine was around 3,000! Yesterday it was at 197. Yippee! Orders of magnitude improvement are what we're all about around here.
With that, we're going out to find something nice for lunch to celebrate.
They did some lab work yesterday while I was there (of course) and the news was good. There's a chemical in the blood that indicates cancer is growing, it's called the CEA marker. Normal range is less than 5. Two months ago mine was around 3,000! Yesterday it was at 197. Yippee! Orders of magnitude improvement are what we're all about around here.
With that, we're going out to find something nice for lunch to celebrate.
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