Over time, and I am happy to be able to continue saying that, you discover that human suffering is ubiquitous - that each day there are new struggles to overcome, and news of others that are now traveling the difficult roads of health challenges. Dear friends and family are struggling against cancers, against relationship challenges, against accidental injuries. For me, these are additional reminders of the fragile connections between us, and the most beautiful and tenuous link that we have to this existence. Life is such a short and rich journey.
Years ago, an aggressive throat cancer took a beloved aunt-in-law from my experience of this world. Taken long before anyone expected, Teri left a gaping hole in many lives. We traveled far to support her in her fight... And it was a fight. She had to have aggressive radiation therapy - with a hard plastic mask to help ensure that the radiation was targeted precisely each time. The cancer made it difficult for her to breath and to swallow. It was a difficult visit for so many reasons.
I remember several scenes so vividly. This was Toronto in the winter. There was snow, though not much. It was cold and sunny. I walked around the area of the hospital, and in a small music shop heard (and purchased) my first Eva Cassidy CD. Eva was from the Washington, DC area... her voice was beautiful, her covers of existing music fresh, and her range of musical interest broad. I did not discover until later that Eva had died in 1997 of melanoma. Her wonderful bright music haunts my memory of Teri and that miserable time in Toronto in early 2001.
Namaste.
Saturday, April 13, 2013
Sunday, April 7, 2013
How are you doing?
So... here we are... it's been about fourteen months since my last blog post, and the silence has been both welcome and worrisome for some of my readers. Many (rightly) have assumed that no news is good news, but there are others that seem to ping the blog every so often and need to know what has been going on.
We are maintaining a watchful attention to my insides. This entails a monthly visit to the oncology nurses to flush out my Powerport. Every three months, I see either my oncologist or my liver surgeon for a brief physical exam, and every six months (just before the meeting with one of the docs) I have a CT scan of everything from my neck down to my groin. So far, no evidence of disease from the two scans and four blood tests from 2012. My first CT scan of 2013 is scheduled this month.
These semi-constant reminders of my physical mortality can be uncomfortable. The palpable feeling that I do not control the length of my stay on spaceship Earth is hard for me. But it is also hard to try to control too many things about living a life. I am exercising regularly, and plan (again) to conquer some challenging bike rides this summer. I am in either a spin class or weight training four-five days each week, at what some consider to be an ungodly-early hour (5am-6am each morning). I am trying to eat a mostly vegetarian diet, but my surgeon has suggested that I may need to eat animal protein regularly if I expect to be a healthy cyclist. His point is that I am not a "religious" adherent to the vegetarian philosophy and may be unable to provide all the nutrients an athlete needs by eating a non-meat diet without a lot of commitment and education. And he is right, in that I am unwilling to do the "all-in" commitment that vegetarianism and high-performance cycling demand. So meat has re-entered my diet to a small degree. Mostly animals that are locally-grown and fed a "natural" diet.
I find my work challenging, but also find myself ready for a change of scenery. I am not sure what that will mean, or when it will play out, but it is on my mind.
Family drama is mostly absent these days, though life with a teenager has its ups-and-downs. I remember the thoughts of willfulness and worldly knowledge that I had 35 or so years ago, and try to keep perspective on things. It is not always the easiest thing for me to do, though, and I need to work on that continuously. While being a parent is very rewarding, it is not for the faint of heart.
Bye for now. I will try to come back more regularly. Namaste.
We are maintaining a watchful attention to my insides. This entails a monthly visit to the oncology nurses to flush out my Powerport. Every three months, I see either my oncologist or my liver surgeon for a brief physical exam, and every six months (just before the meeting with one of the docs) I have a CT scan of everything from my neck down to my groin. So far, no evidence of disease from the two scans and four blood tests from 2012. My first CT scan of 2013 is scheduled this month.
These semi-constant reminders of my physical mortality can be uncomfortable. The palpable feeling that I do not control the length of my stay on spaceship Earth is hard for me. But it is also hard to try to control too many things about living a life. I am exercising regularly, and plan (again) to conquer some challenging bike rides this summer. I am in either a spin class or weight training four-five days each week, at what some consider to be an ungodly-early hour (5am-6am each morning). I am trying to eat a mostly vegetarian diet, but my surgeon has suggested that I may need to eat animal protein regularly if I expect to be a healthy cyclist. His point is that I am not a "religious" adherent to the vegetarian philosophy and may be unable to provide all the nutrients an athlete needs by eating a non-meat diet without a lot of commitment and education. And he is right, in that I am unwilling to do the "all-in" commitment that vegetarianism and high-performance cycling demand. So meat has re-entered my diet to a small degree. Mostly animals that are locally-grown and fed a "natural" diet.
I find my work challenging, but also find myself ready for a change of scenery. I am not sure what that will mean, or when it will play out, but it is on my mind.
Family drama is mostly absent these days, though life with a teenager has its ups-and-downs. I remember the thoughts of willfulness and worldly knowledge that I had 35 or so years ago, and try to keep perspective on things. It is not always the easiest thing for me to do, though, and I need to work on that continuously. While being a parent is very rewarding, it is not for the faint of heart.
Bye for now. I will try to come back more regularly. Namaste.
Saturday, April 6, 2013
Guest Post: Becoming a Caregiver - How My Wife and I Dealt With Cancer
The following blog post was written by Cameron Von St. James, and I am posting it here at his request. It is a story of hope, and struggle, and persistent love, and honesty in the face of bad news. For those of you that want to contact him, please consider his blog (http://www.mesothelioma.com/blog/authors/cameron/).
In sidebar news, I am still "NED" but we are monitoring my insides every six months via CT scan and I meet with my liver surgeon and/or oncologist every three months. For now, all systems are "go."
GUEST POST: "My wife has often said that she has no idea how hard it was for me when she was diagnosed with mesothelioma. I still remember that day like it was yesterday. It was three months after Heather gave birth to our daughter, Lily. Those three months were filled with hope and joy and happiness. All of that was stolen from our lives when Heather’s doctor looked at her and told her about her cancer. I remember wondering how we were going to get through this.
I was angry. I was so angry that sometimes I was only able to use profane language to communicate. I quickly realized, however, that I needed to gain control of my emotions and be strong for my wife. She needed someone with optimism and strength; she needed me to be her rock. It wasn’t easy for me, but I managed to do it. This time in our lives was very difficult and very busy. I was overwhelmed with all the responsibilities that I’d been given. I was working, taking care of my wife and daughter, making travel arrangements, and taking care of our pets and home. If it wasn’t for all the help our loved ones offered during this time, I’m not sure how I would have made it through.
Of everything we endured while my wife suffered from cancer, it was my two-month separation from Heather and Lily that was the most difficult on me. Lily was in South Dakota with Heather’s parents, while Heather and I were in Boston for her surgery. Heather left Boston and flew to South Dakota to be with Lily and her parents for her recovery immediately after her surgery. She needed the recovery time to prepare for her next phase of mesothelioma treatment: radiation and chemotherapy. Because I had to stay behind to work, I saw Heather and Lily only one time. It wasn’t an easy decision to make, but we had to do what was best for our family. Fortunately, we had Heather’s parents in our lives to help her with Lily and her recovery so that I could work to continue supporting our family.
The one time I saw my wife and daughter was when I drove 11 hours in a snowstorm to see them. I left Friday after work and had to be home in time to go back to work on Monday morning. The trip was long, exhausting, and entirely too short. I was only able to spend Saturday and a few hours on Sunday morning with the two of them, before driving back home for work on Monday.
This was not an easy time in my life, but it was something I don’t look back on with regret. We were very fortunate to have the ability to make the decisions we made. All the help that was offered to us was invaluable, and it was because of this help that I was able to prioritize the many things that needed doing and help my family. What I learned most was that I had to accept help as it was offered to me. Without this help, I don’t know what we would have done.
When Heather first received her diagnosis, we learned that most mesothelioma patients typically have a life expectancy measured in months. It was difficult to hold on to hope when presented with information like that. However, my family stuck together and stayed strong, and Heather has defied the odds. After intense treatment and with a never-give-up attitude, months turned into years. Heather is here, healthy and cancer free, over six years later, and we couldn’t be more thankful for the second chance we’ve been given. Heather has been able to watch our daughter grow up, and our lives have returned to a state of relative normalcy. We hope that our story can be a source of hope and optimism for people currently struggling with cancer."
- Cameron Von St. James
In sidebar news, I am still "NED" but we are monitoring my insides every six months via CT scan and I meet with my liver surgeon and/or oncologist every three months. For now, all systems are "go."
GUEST POST: "My wife has often said that she has no idea how hard it was for me when she was diagnosed with mesothelioma. I still remember that day like it was yesterday. It was three months after Heather gave birth to our daughter, Lily. Those three months were filled with hope and joy and happiness. All of that was stolen from our lives when Heather’s doctor looked at her and told her about her cancer. I remember wondering how we were going to get through this.
I was angry. I was so angry that sometimes I was only able to use profane language to communicate. I quickly realized, however, that I needed to gain control of my emotions and be strong for my wife. She needed someone with optimism and strength; she needed me to be her rock. It wasn’t easy for me, but I managed to do it. This time in our lives was very difficult and very busy. I was overwhelmed with all the responsibilities that I’d been given. I was working, taking care of my wife and daughter, making travel arrangements, and taking care of our pets and home. If it wasn’t for all the help our loved ones offered during this time, I’m not sure how I would have made it through.
Of everything we endured while my wife suffered from cancer, it was my two-month separation from Heather and Lily that was the most difficult on me. Lily was in South Dakota with Heather’s parents, while Heather and I were in Boston for her surgery. Heather left Boston and flew to South Dakota to be with Lily and her parents for her recovery immediately after her surgery. She needed the recovery time to prepare for her next phase of mesothelioma treatment: radiation and chemotherapy. Because I had to stay behind to work, I saw Heather and Lily only one time. It wasn’t an easy decision to make, but we had to do what was best for our family. Fortunately, we had Heather’s parents in our lives to help her with Lily and her recovery so that I could work to continue supporting our family.
The one time I saw my wife and daughter was when I drove 11 hours in a snowstorm to see them. I left Friday after work and had to be home in time to go back to work on Monday morning. The trip was long, exhausting, and entirely too short. I was only able to spend Saturday and a few hours on Sunday morning with the two of them, before driving back home for work on Monday.
This was not an easy time in my life, but it was something I don’t look back on with regret. We were very fortunate to have the ability to make the decisions we made. All the help that was offered to us was invaluable, and it was because of this help that I was able to prioritize the many things that needed doing and help my family. What I learned most was that I had to accept help as it was offered to me. Without this help, I don’t know what we would have done.
When Heather first received her diagnosis, we learned that most mesothelioma patients typically have a life expectancy measured in months. It was difficult to hold on to hope when presented with information like that. However, my family stuck together and stayed strong, and Heather has defied the odds. After intense treatment and with a never-give-up attitude, months turned into years. Heather is here, healthy and cancer free, over six years later, and we couldn’t be more thankful for the second chance we’ve been given. Heather has been able to watch our daughter grow up, and our lives have returned to a state of relative normalcy. We hope that our story can be a source of hope and optimism for people currently struggling with cancer."
- Cameron Von St. James
Monday, February 13, 2012
Big Pharma...
OK - in keeping with the moving things along theme, there are two physical residuals from the second lost year. The first is my power port. It is still implanted in my upper left chest wall, ready to deliver any kind of wonderful drug therapy directly into my heart. My oncologist said that I could have it removed any time I wanted, but that if there was another recurrence I would need to get another one put it. And it is still useful for the CT scans. And it does not hurt or bother me in any physical sense. But it is a constant emotional reminder of severe yuckiness... and I am of mixed thoughts on the value of its presence. Let's just say that the jury is out on whether it is staying or going, and that I will revisit this thinking after my next CT scan in April.
The second residual is this pharmacopeia that remains from my dance with the chemicals... pain relief, anti-nausea, anti-anxiety, insomnia, mucle-relaxants, steroids, anti-fungals, mouth sore rinse, anti-heartburn, stool softeners, and even body wash that does not require water. It is amazing what kind of chemical flotsam remains after the chemotherapy ship sails into another port. And I am truly unsure what the proper disposal mechanism should be... any ideas?
Namaste.
The second residual is this pharmacopeia that remains from my dance with the chemicals... pain relief, anti-nausea, anti-anxiety, insomnia, mucle-relaxants, steroids, anti-fungals, mouth sore rinse, anti-heartburn, stool softeners, and even body wash that does not require water. It is amazing what kind of chemical flotsam remains after the chemotherapy ship sails into another port. And I am truly unsure what the proper disposal mechanism should be... any ideas?
Namaste.
Sunday, February 5, 2012
Moving on versus moving along
It's February of 2012. I am not sure where all the time goes, but it is sure gone. A little over a month ago we were sharing the sunshine in Hawaii with some dear friends, claiming a little recompense for a trying year. I think we were successful - I know that the warm ocean, the bicycle riding with the Hawaii Bicycle Club, and the luau were a welcome distraction from both the cancer-related knowledge that we gained and the anxious anticipations that characterized 2011. It was a hard journey.
Now I am training my body for healthy, physical challenges in the coming months. I have a number of bicycle rides planned (including my fourth Reach the Beach, and my first Tour des Chutes and Crater Lake Century). I am creating strength in my upper body that I have not felt for 25 years, to match the power and endurance of my legs. I am moving on, and moving along, in physical terms. And I am still monitoring the health of my organic systems too. We had a follow-up appointment with my oncologist, and she is very happy with the state of my bodily affairs. My CEA level - the blood test that singularly signalled the metastases to my liver - is back down to the barely detectable amounts that are characteristic of "normal" for me. I was holding my proverbial breath over the Jan. 21-22 weekend while that test was being carried out, and the phone call from my oncologist's assistant on Jan. 24th was indeed a welcome one.
I am just returned from a cancer survivor visit at the Seattle Cancer Care Alliance. In 2007, I went to them becuase they were leading an effort in the Pacific Northwest that was meant to ensure that cancer survivors had an integrated and managed follow-up care system. It is surprising to me to know that sometimes cancer patients do not have any kind of coordinated, post-treatment health management plan. So I was (and am) determined to not allow that ball to be dropped in my case. I spoke to a Physician's Assistant for the better part of an hour, describing my general sense of being at peace with where things are (to her repeated amazement, I might add). She wanted to hear about the pains and trials of cetuximab, and a liver resection, and all of the healing that had to happen to get to the place I am at today. She pronounced me mentally well, she laughed with me about the future, she helped me to see that I continue to do the right things, and she asked me a couple of hard questions about my understanding of the next few years. I am still mulling those questions - fodder for future blogging, no doubt. But my mental condition is also good (despite all jokes and friendly observations to the contrary).
I am moving on from another hard chapter. I am glad to be through it, though the lessons will certainly remain with me a while. And I am moving along the journey of living too. There is no obvious ending to declare, there is only patient reflection on what can only be described as an interesting life.
Namaste.
Now I am training my body for healthy, physical challenges in the coming months. I have a number of bicycle rides planned (including my fourth Reach the Beach, and my first Tour des Chutes and Crater Lake Century). I am creating strength in my upper body that I have not felt for 25 years, to match the power and endurance of my legs. I am moving on, and moving along, in physical terms. And I am still monitoring the health of my organic systems too. We had a follow-up appointment with my oncologist, and she is very happy with the state of my bodily affairs. My CEA level - the blood test that singularly signalled the metastases to my liver - is back down to the barely detectable amounts that are characteristic of "normal" for me. I was holding my proverbial breath over the Jan. 21-22 weekend while that test was being carried out, and the phone call from my oncologist's assistant on Jan. 24th was indeed a welcome one.
I am just returned from a cancer survivor visit at the Seattle Cancer Care Alliance. In 2007, I went to them becuase they were leading an effort in the Pacific Northwest that was meant to ensure that cancer survivors had an integrated and managed follow-up care system. It is surprising to me to know that sometimes cancer patients do not have any kind of coordinated, post-treatment health management plan. So I was (and am) determined to not allow that ball to be dropped in my case. I spoke to a Physician's Assistant for the better part of an hour, describing my general sense of being at peace with where things are (to her repeated amazement, I might add). She wanted to hear about the pains and trials of cetuximab, and a liver resection, and all of the healing that had to happen to get to the place I am at today. She pronounced me mentally well, she laughed with me about the future, she helped me to see that I continue to do the right things, and she asked me a couple of hard questions about my understanding of the next few years. I am still mulling those questions - fodder for future blogging, no doubt. But my mental condition is also good (despite all jokes and friendly observations to the contrary).
I am moving on from another hard chapter. I am glad to be through it, though the lessons will certainly remain with me a while. And I am moving along the journey of living too. There is no obvious ending to declare, there is only patient reflection on what can only be described as an interesting life.
Namaste.
Monday, December 26, 2011
Mele Kalikimaka, part deux
So - a week in the tropical sunshine was an unexpected pleasure. Honestly, I am not a hot weather kind of guy. When it gets warm (and especially if it is also humid) I retreat into a kind of preservation mode. It is like I am a walking radiation detector - feeling heat radiating off of everything. I know that I can be somewhat prickly when I feel like there is a way to keep cooler that others do not seem to recognize (say, quickly closing a door to keep cool air inside, closing window curtains to keep sunlight from entering and warming surfaces that then warm the air, etc.) Waikoloa at Christmastime has been magnificent. 80 degrees during the day, sometimes windy, 68 degrees at night, usually breezy, gorgeous clear mornings with stars stars stars in the sky.
Green sea turtles hauling themselves up onto the beach and rocks for their afternoon constitutional naps. Why they do that right now in front of us is less important than the evolutionary impulse that created this insane variety on life. Birds adapting to isolation on an island in the middle of a vast ocean of saltwater. Grass growing amidst the lava. We Earthlings are a hardy group - plants and animals alike.
Peace and happiness for the coming years,
Namaste.
Green sea turtles hauling themselves up onto the beach and rocks for their afternoon constitutional naps. Why they do that right now in front of us is less important than the evolutionary impulse that created this insane variety on life. Birds adapting to isolation on an island in the middle of a vast ocean of saltwater. Grass growing amidst the lava. We Earthlings are a hardy group - plants and animals alike.
Peace and happiness for the coming years,
Namaste.
Thursday, December 22, 2011
Mele Kalikimaka
Monthly blogging? That is kinda pathetic,really. So there is nothing to say for a month? From Ed??
OK - so the drama of chemotherapy has wound down, and the time pressure of work deadlines has eased enough to take some time off. We decided (with the financial help of familial generosity) to spend this holiday season someplace warm and near a beach. Between work and vacation planning, I have been a little bit preoccupied, but in a good way..
Yesterday, we walked the half-mile to the beach, paraded (gracelessly in flippers) into the Pacific Ocean, and cavorted with colorful fish for a few hours. Then, as a kind of dessert we watched six sea turtles haul themselves onto the sand and rocks to warm their bodies in the tropical sun. There appear to be competing explanations for this beaching action, according to a decidely unscientific poll of observers. Theory one (sounding plausible, since it was delivered authoritatively by someone that claimed to witness these actions for a month each year) has that they need to get into the sun so that the UV rays from the sun will eliminate the algae that grows on their shells. Theory two (sounding better to me since it was delivered by a biology professor) explained that the sun warms the turtles and helps them with digestion - under water they can only get to the temperature of the sea, whereas on land they can get much warmer! And we all know how nice it is to curl up for a nap after a big lunch, don't we?
There is so much that we don't really know about our biology, or even our mental capacity. For as long as I have walked this wee planet, I have thought that there were true answers and false ones - that we could figure out the right and the wrong. I learned (initially through a study of mathematics and then again through a practical study of cancer) that there are many right answers, and an awful lot of questions for which the best answer is that we don't know. And I have also learned about warmth, and how it helps with digestion, but more about how it can mean a world of difference in how we interact with other people and our world.
So, rose-colored glasses are a choice we can make each day - put them on! What is the harm in seeing things as positively as possible?
Namaste.
OK - so the drama of chemotherapy has wound down, and the time pressure of work deadlines has eased enough to take some time off. We decided (with the financial help of familial generosity) to spend this holiday season someplace warm and near a beach. Between work and vacation planning, I have been a little bit preoccupied, but in a good way..
Yesterday, we walked the half-mile to the beach, paraded (gracelessly in flippers) into the Pacific Ocean, and cavorted with colorful fish for a few hours. Then, as a kind of dessert we watched six sea turtles haul themselves onto the sand and rocks to warm their bodies in the tropical sun. There appear to be competing explanations for this beaching action, according to a decidely unscientific poll of observers. Theory one (sounding plausible, since it was delivered authoritatively by someone that claimed to witness these actions for a month each year) has that they need to get into the sun so that the UV rays from the sun will eliminate the algae that grows on their shells. Theory two (sounding better to me since it was delivered by a biology professor) explained that the sun warms the turtles and helps them with digestion - under water they can only get to the temperature of the sea, whereas on land they can get much warmer! And we all know how nice it is to curl up for a nap after a big lunch, don't we?
There is so much that we don't really know about our biology, or even our mental capacity. For as long as I have walked this wee planet, I have thought that there were true answers and false ones - that we could figure out the right and the wrong. I learned (initially through a study of mathematics and then again through a practical study of cancer) that there are many right answers, and an awful lot of questions for which the best answer is that we don't know. And I have also learned about warmth, and how it helps with digestion, but more about how it can mean a world of difference in how we interact with other people and our world.
So, rose-colored glasses are a choice we can make each day - put them on! What is the harm in seeing things as positively as possible?
Namaste.
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