[Catchy organ music intro] "Here comes Johnny singing oldies, goldies. Be-bop-a-lula, baby, what I say..."
I love that song - more so now than I suppose that I did in the 1980s when it came out. At that time, I was just finishing my undergraduate degree, and was hanging out with my volleyball friends a lot. MTV was a new thing, and the songs that were being "video-ized" were pretty popular. Mark Knopfler and Dire Straits put together a video that showed sports players' bloopers with his music playing in the background. I found it to be both funny and refreshingly unlike the other videos being shown - of bands playing the music live and trying to tell the story of the song in snippets, or even creations where the artist lip-syncs to the lyrics while "acting" then out. He was different, and imagined a wonderful walk of life that sometimes went awry.
I like it now for the memories of my life that it provokes... of many evenings with those volleyball friends in a bar called Dante's on Roosevelt in Seattle's University District - the smell of cheap beer (Tuesdays were $1 pitcher night!), the old video games that ate more quarters than they registered for play, the abused pool tables. We had some marvelous (though tipsy) times in that place, regardless if we won or lost. I wonder what Dan, Nebosja, Jim, Katie, Pam, Micky, and Bunny are doing these days...
Sometimes that walk of life is a trudge. Other times, it is skipping and laughing and burbling along. But we only get this one walk, and to me that bears remembering. Maybe I have said stuff like this before, maybe even in this blog (truth? I have not gone back to read through it... hard walk, that). But I felt like I should recall that we daily choose the path and the tempo of our walk. That we are not walking alone, and that the pace changes regularly. So, today, let's make the walk purposeful.
Namaste.
[Catchy music continues... "Here comes Johnny gonna tell you a story - hand me down my walkin' shoes!"]
Sunday, November 2, 2014
Sunday, October 26, 2014
Cancer bloggers
We all know who we are. We have been through a scare or two, and we think that perhaps there is something personal that needs to be said - for family, for friends, and even for the "just curious" out there in the worlds of the Internet. I am guilty of lurking my way into other cancer patients' and survivors' lives through the pains and fears, joys and triumphs, and even tragic losses that we post.
So, what is my point? Not sure, except that I still find myself drawn into some of these stories - almost like they are chapters in a novel. "Ed has a mostly normal, mostly carefree, mostly OK life and then "BAM!" cancer appears." Insert stages of grief, frantic internet searches for information about [fill-in-the-blank carcinoma, melanoma, etc.], tears, stoicism, decisions, fatigue, surgeries, injections, nausea, more tears, and so on. It is a consuming story, punctuated by sometimes charming or poignant insights, and sometimes those are recorded for some kind of posterity in a blog.
When you are following a cancer blogger, you engage in their dance with death. For a person diagnosed with cancer, well, for this person at least, that reality forces its soulful way into consciousness rather quickly. I remain hopeful for my longevity, but still harbor a suspicion that the proverbial "other shoe" is hanging in the air, ready to drop. Maybe that is what other survivors think too?
So when I see a blog "go silent" I worry. Recently, after a several month hiatus, a blog-friend posted anew to her blog. It made me happy. So, in the spirit of happiness, I plan to write here more often. I-know, I-know, I wrote similar words before, but now I mean it. I will try for weekly at first. Call me on it!
Namaste.
So, what is my point? Not sure, except that I still find myself drawn into some of these stories - almost like they are chapters in a novel. "Ed has a mostly normal, mostly carefree, mostly OK life and then "BAM!" cancer appears." Insert stages of grief, frantic internet searches for information about [fill-in-the-blank carcinoma, melanoma, etc.], tears, stoicism, decisions, fatigue, surgeries, injections, nausea, more tears, and so on. It is a consuming story, punctuated by sometimes charming or poignant insights, and sometimes those are recorded for some kind of posterity in a blog.
When you are following a cancer blogger, you engage in their dance with death. For a person diagnosed with cancer, well, for this person at least, that reality forces its soulful way into consciousness rather quickly. I remain hopeful for my longevity, but still harbor a suspicion that the proverbial "other shoe" is hanging in the air, ready to drop. Maybe that is what other survivors think too?
So when I see a blog "go silent" I worry. Recently, after a several month hiatus, a blog-friend posted anew to her blog. It made me happy. So, in the spirit of happiness, I plan to write here more often. I-know, I-know, I wrote similar words before, but now I mean it. I will try for weekly at first. Call me on it!
Namaste.
Sunday, October 12, 2014
Latent cancer ravings?
Hello to blog-land... yeah, it's been a while. Not been up to much, you? It's been such a long time, and I really do miss your smile...
Wait, hold on - no ripping off cheesy lyrics from 80's songs. OK, well, maybe...
A dear friend claims that she checks this blog for posts in a manner that could only be called religious (or maybe obsessive). This is mostly a test to see if her claim is true (you know who you are!) But at the same time, I am feeling a little anxious about my upcoming CT scan and CEA tests. You see, there is a pattern to my interactions with colon cancer - a periodicity of four years. Now I will grant that I have only two data points (March of 2007, and then January of 2011), but if that serves as any kind of predictor then we are looking at cancer detection in say, November of 2014. This is right around the proverbial corner. Alas.
So, the next month or so will be filled with varying levels of angst. I have a very distracting (and somewhat stressful) job these days - which is both good and bad. And I am still nursing a "broken" thumb (though it may actually be a detached tendon). EASY to forget the pattern, right? Oh, and my friends and family are always here for me.
We may be having our last throes of summer today and tomorrow. So - there's a warm wind blowing the stars around. And I'd really love to see you tonight.
Namaste.
Wait, hold on - no ripping off cheesy lyrics from 80's songs. OK, well, maybe...
A dear friend claims that she checks this blog for posts in a manner that could only be called religious (or maybe obsessive). This is mostly a test to see if her claim is true (you know who you are!) But at the same time, I am feeling a little anxious about my upcoming CT scan and CEA tests. You see, there is a pattern to my interactions with colon cancer - a periodicity of four years. Now I will grant that I have only two data points (March of 2007, and then January of 2011), but if that serves as any kind of predictor then we are looking at cancer detection in say, November of 2014. This is right around the proverbial corner. Alas.
So, the next month or so will be filled with varying levels of angst. I have a very distracting (and somewhat stressful) job these days - which is both good and bad. And I am still nursing a "broken" thumb (though it may actually be a detached tendon). EASY to forget the pattern, right? Oh, and my friends and family are always here for me.
We may be having our last throes of summer today and tomorrow. So - there's a warm wind blowing the stars around. And I'd really love to see you tonight.
Namaste.
Thursday, August 15, 2013
How not to say the wrong thing...
I usually steer clear of re-posts, but this one is too good to pass up.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
I hope that I can remember the "comfort in, dump out" mantra whenever I am in a position to: (a) not be at the center of the attention, and (b) interact with my many survivor-friends. It is so easy to forget that we are fragile humans, but we are especially fragile when an unexpected illness takes over the world that we know.
Namaste.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
I hope that I can remember the "comfort in, dump out" mantra whenever I am in a position to: (a) not be at the center of the attention, and (b) interact with my many survivor-friends. It is so easy to forget that we are fragile humans, but we are especially fragile when an unexpected illness takes over the world that we know.
Namaste.
Monday, April 29, 2013
Tsunami
Last night I
had a memorable dream - memorable for two reasons... (1) I do not usually
remember my dreams (or if I do they quickly fade away), and (2) I seem to have
a context for this one that is poignant. Wow, with a lead-in like that, this
sounds like it's going to be a good one... So, let's go!
I dreamed
that I was on a sunny beach with my daughter, and that we were playing in the
surf. For some unknown reason, we were both surfers and we were playing in some
gentle waves - but not really surfing. Suddenly, I noticed that the waves are
getting a bit bigger, and that we could actually surf on them. One or two of
the bigger ones rolled by me, as I was out a few hundred feet, but then I
managed to time a wave and "belly-boarded" my way all the way in to
the beach itself. Exhilarated, I stood up and looked around to find Julia, but
she was nowhere to be seen.
Then I looked
out toward the ocean again, and saw that the water on the beach had withdrawn
far out to sea, and could not be seen even in the distance. Hyper-concerned
now, as I recognized the tell-tale evidence of an approaching tsunami, I
shouted that we must get off the beach. I then yelled for Julia, and saw her up
above the beach on a small bluff running down toward me. I yelled and pointed
for her to move up and away from the beach, which she understood and started to
do. We would meet up off the beach. Then I tried to get myself off the beach by
jumping up to grab at a knotted rope, and began to pull myself up. I was
struggling, but making progress, when I wondered if I would be able to put
enough height distance between me and the beach before the first tsunami wave
arrives...
And then I
woke up.
That was a pretty
powerful dream. Some rudimentary after-analysis quickly points out some serious
factual issues - like, I have no idea how to surf (or even bellyboard), and Oregon's
offshore areas are quite steep so the water would not disappear like it might
on a shallower beach, and the water is too cold for me to ever want to put my
whole body in it anyways, etc. But dreams are rarely true depictions of a
reality, right?
This morning
I had a routine CT scan scheduled – of the “every six months” variety. And
while I have no symptoms that would indicate that anything is amiss, the idea
of another cancer recurrence somewhere in me has the feeling of a pending
tsunami. It has been over a year since my last chemotherapy treatment, and over
two years since the metastases showed up in my liver. But I am anxious about
the effect a recurrence might have on me and my family. We are just getting to
a place that seems normal again.
Peace.
Saturday, April 13, 2013
Recollections
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.
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.
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.
Sunday, November 27, 2011
Fitness - conceptually speaking, that is...
OK - as I noted in my last post, things are looking more and more normal. And they are feeling pretty normal too. I will admit to several second thoughts when it comes to a beer or a glass of wine, and my weight is at a place where I need to think about saying "no" to a second helping (or two). But all-in-all I am ready to think and act like 2011 just didn't exist.
As you will all remember, I have made a point of exercising throughout the whole non-existent 2011 cancer odyssey (redux). I highly recommend to any cancer patient/survivor that they explore the possibility of regular group exercise before, during, and after surgery/chemo. Even though there were (and will be) occasions when you just feel too fatigued to pull off any repetitions, I encourage you to stay with it. In the group setting, with other cancer patients/survivors, I gained a lot of energy and solid support. I cannot say enough about how good that ultimately made me feel. Having a trainer that is aware of cancer and its limitations was an unbelievable experience, and I think I am a better (and stronger) person for that.
Alas, stronger does not mean strong. A couple weeks ago I was chatting with the trainer, wondering if maybe I was ready to "graduate" since I was done with treatment. She simply asked me what my exercise plan was, and when I said I didn't have one she said I had to stay until I did. Wow. Sooooo.... I decided to try out the exercise class/trainer that my wife has been using, in a very basic "CrossFit" program that he was hosting on Thanksgiving Day. Now let me say that he is a great guy, and was very accommodating with my revealed weaknesses, but that class kicked my proverbial butt (and I was using only 15 pound barbells). For context, I have been benching 40+ pound barbells in each hand for a couple of weeks now. As it turns out, my core muscles are terribly weak.
Several "duhs" later - I now realize that I am in no condition for long cycling yet. Apparently have someone slice across your abdomen weakens your core incredibly, and sometimes it takes years to recover strength "down there." My lower back muscles are proportionately over-strong, and they are quick to cramp. I have a lot to learn, and lots of muscle to restore... but I plan several long rides in 2012 - maybe an STP and a Cycle Oregon? Anyone interested in joining me?
Namaste.
As you will all remember, I have made a point of exercising throughout the whole non-existent 2011 cancer odyssey (redux). I highly recommend to any cancer patient/survivor that they explore the possibility of regular group exercise before, during, and after surgery/chemo. Even though there were (and will be) occasions when you just feel too fatigued to pull off any repetitions, I encourage you to stay with it. In the group setting, with other cancer patients/survivors, I gained a lot of energy and solid support. I cannot say enough about how good that ultimately made me feel. Having a trainer that is aware of cancer and its limitations was an unbelievable experience, and I think I am a better (and stronger) person for that.
Alas, stronger does not mean strong. A couple weeks ago I was chatting with the trainer, wondering if maybe I was ready to "graduate" since I was done with treatment. She simply asked me what my exercise plan was, and when I said I didn't have one she said I had to stay until I did. Wow. Sooooo.... I decided to try out the exercise class/trainer that my wife has been using, in a very basic "CrossFit" program that he was hosting on Thanksgiving Day. Now let me say that he is a great guy, and was very accommodating with my revealed weaknesses, but that class kicked my proverbial butt (and I was using only 15 pound barbells). For context, I have been benching 40+ pound barbells in each hand for a couple of weeks now. As it turns out, my core muscles are terribly weak.
Several "duhs" later - I now realize that I am in no condition for long cycling yet. Apparently have someone slice across your abdomen weakens your core incredibly, and sometimes it takes years to recover strength "down there." My lower back muscles are proportionately over-strong, and they are quick to cramp. I have a lot to learn, and lots of muscle to restore... but I plan several long rides in 2012 - maybe an STP and a Cycle Oregon? Anyone interested in joining me?
Namaste.
Saturday, November 19, 2011
Seven weeks later...
My last chemotherapy treatment was on October 3rd. It feels like a lifetime ago, and yesterday at the same time. I am well into the "normal" catching-up that needs to be done - had a major dental review (full mouth x-rays, which led the dentist and I to conclude that (1) 18 months is long enough for a cavity to form - but just one, (2) two composite fillings have ungainly shadows below them - meaning that I need to have them replaced, and (3) three of my crowns were not correctly seated when they were put in - and they need to be watched/fixed so that the little spurs do not trap food and become cavities or worse. I have two more appointments scheduled for teeth cleaning and dental work to be done on items (1) and (2).
We are also tracking down some of the other (seemingly random) small stuff that has been noticed over the past year. Back in January, one of the things that my oncologist noted - slightly elevated calcium levels - is being checked out by my new endocrinologist. To date, it appears that I may have a slightly hyperactive parathyroid, which may be causing calcium to leach out of my bones slowly. About two weeks ago I had 9 vials of blood drawn for a complete battery of tests and a bone densitometry scan, and I find out about what all that means on Monday. Should be interesting... And then there is the toenail fungus that is being treated by the daily application of anti-fungal toe polish. Turns out that it takes about 6 months for your toenails to completely grow out - and that is how long I have to polish (and un-polish) my toenails twice each day.
My hair has decided to start growing again, but have no fear - the male pattern baldness has been unaffected so far. No one need fear that I will turn into a 2011 version of Grizzly Adams! I am sleeping well enough (though I am told that I regularly snore).
Perhaps most importantly, my energy is back. I am working out twice a week with a trainer at the hospital - but figure that starting in January I will be ready to be on my own. I need to get onto my bike. We are planning a warm, relaxing trip in the near future - I wonder if they rent bikes in Hawaii?
Namaste!
We are also tracking down some of the other (seemingly random) small stuff that has been noticed over the past year. Back in January, one of the things that my oncologist noted - slightly elevated calcium levels - is being checked out by my new endocrinologist. To date, it appears that I may have a slightly hyperactive parathyroid, which may be causing calcium to leach out of my bones slowly. About two weeks ago I had 9 vials of blood drawn for a complete battery of tests and a bone densitometry scan, and I find out about what all that means on Monday. Should be interesting... And then there is the toenail fungus that is being treated by the daily application of anti-fungal toe polish. Turns out that it takes about 6 months for your toenails to completely grow out - and that is how long I have to polish (and un-polish) my toenails twice each day.
My hair has decided to start growing again, but have no fear - the male pattern baldness has been unaffected so far. No one need fear that I will turn into a 2011 version of Grizzly Adams! I am sleeping well enough (though I am told that I regularly snore).
Perhaps most importantly, my energy is back. I am working out twice a week with a trainer at the hospital - but figure that starting in January I will be ready to be on my own. I need to get onto my bike. We are planning a warm, relaxing trip in the near future - I wonder if they rent bikes in Hawaii?
Namaste!
Friday, October 28, 2011
Unremarkable
Adjective. "Not worthy of note or attention; found in the ordinary course of events; not exceptional in any way especially in quality or ability or size or degree."
This may be my new favorite word. Way back in 2007, I was very happy to hear "no evidence of disease (NED, for short)"... but now my watchword is unremarkable. This is what the professional readers-of-CT-scans (aka radiologists) write down when they do not see anything worth talking about relative to the many organs that a CT scan makes "visible." So, the bottom line is that nothing was noticed (by folks who are trained to notice things) in the CT imagery that we gathered on Tuesday. My oncologist was happy - and that is another reason for me to be happy. Stuff in the square brackets below is color commentary from [Yours Truly].
To wit:
PROCEDURE:
Following the administration of both oral and IV contrast, volumetric CT imaging was performed from the lower neck to the upper thighs, with reconstruction of planar images [requires an hour of drinking barium contrast, a pressurized IV contrast delivery through my port, and a certain level of no-clothing-ness - just thought you would like to know...].
FINDINGS: The lungs remain clear, and no developing nodular mass is seen in either lung. ... No areas of airspace consolidation are seen in either lung. No pleural effusion [buildup of fluid between the layers of tissue that line the lungs and chest cavity] is present bilaterally. No developing adenopathy [swelling or abnormal enlargement of the lymph nodes] is seen throughout the chest. Heart size is normal. [WHEW!] A central venous port is implanted in the upper left chest wall, with its catheter entering the subclavian vein. [Yup... I have a PowerPort there for easy blood draws, chemotherapy transfusions, and CT scan contrast infusions.]
When compared with prior exams [4/7/2011 and 5/22/2011], laparotomy [a surgical procedure involving a large incision through the abdominal wall to gain access into the abdominal cavity] has been performed with resection of two metastatic lesions of the liver. A portion of the left lobe has been resected, and additionally [a little redundancy there, eh?], a portion of the right lobe has been resected. Several small cysts are seen within the remaining liver [perfectly normal, I am told], stable in appearance when compared with prior exams. No new lesion is seen within the remaining liver parenchyma [tissue that is characteristic of an organ]. Pancreas, spleen, adrenal glands, and kidneys all appear UNREMARKABLE. Collecting systems are not dilated.
There are postsurgical changes also identified related to distal colon resection [the surgical procedure I had in 2007]. A suture anastomosis line is seen at the rectosigmoid junction. GI tract appears UNREMARKABLE without areas of wall thickening or dilatation [same as dilation]. No developing adenopathy is seen throughout the abdomen and pelvis. No ascites [excess fluid in the space between the tissues lining the abdomen and abdominal organs] is present. Bladder appears UNREMARKABLE.
IMPRESSION:
(1) When compared with prior imaging studies, there are new postsurgical changes related to resection of two metastatic lesions previously seen within the left and right lobes of the liver. No new lesions are identified within the remaining liver parenchyma. Several hepatic [related to the liver] cysts appear stable.
(2) Postsurgical changes related to distal colonic resection.
(3) At this time, there are no findings of metastatic disease within the chest, abdomen, and pelvis.
Sooooo..... can we have a collective woot-woot and a huge sigh of relief? Thank you, thank you very much. My weight is recovering (now at a nice 172 lbs...) and my energy is returning as well. I worked full-time for the past two weeks, and did not even once feel too fatigued during the day to remain at my desk. November is going to FLY by, with trips planned to New Hampshire, Seattle, Manzanita (OR), and Portland, and a huge gathering for Thanksgiving.
Thank you all for your attention - you will now be returned to your regularly scheduled program.
Namaste.
This may be my new favorite word. Way back in 2007, I was very happy to hear "no evidence of disease (NED, for short)"... but now my watchword is unremarkable. This is what the professional readers-of-CT-scans (aka radiologists) write down when they do not see anything worth talking about relative to the many organs that a CT scan makes "visible." So, the bottom line is that nothing was noticed (by folks who are trained to notice things) in the CT imagery that we gathered on Tuesday. My oncologist was happy - and that is another reason for me to be happy. Stuff in the square brackets below is color commentary from [Yours Truly].
To wit:
PROCEDURE:
Following the administration of both oral and IV contrast, volumetric CT imaging was performed from the lower neck to the upper thighs, with reconstruction of planar images [requires an hour of drinking barium contrast, a pressurized IV contrast delivery through my port, and a certain level of no-clothing-ness - just thought you would like to know...].
FINDINGS: The lungs remain clear, and no developing nodular mass is seen in either lung. ... No areas of airspace consolidation are seen in either lung. No pleural effusion [buildup of fluid between the layers of tissue that line the lungs and chest cavity] is present bilaterally. No developing adenopathy [swelling or abnormal enlargement of the lymph nodes] is seen throughout the chest. Heart size is normal. [WHEW!] A central venous port is implanted in the upper left chest wall, with its catheter entering the subclavian vein. [Yup... I have a PowerPort there for easy blood draws, chemotherapy transfusions, and CT scan contrast infusions.]
When compared with prior exams [4/7/2011 and 5/22/2011], laparotomy [a surgical procedure involving a large incision through the abdominal wall to gain access into the abdominal cavity] has been performed with resection of two metastatic lesions of the liver. A portion of the left lobe has been resected, and additionally [a little redundancy there, eh?], a portion of the right lobe has been resected. Several small cysts are seen within the remaining liver [perfectly normal, I am told], stable in appearance when compared with prior exams. No new lesion is seen within the remaining liver parenchyma [tissue that is characteristic of an organ]. Pancreas, spleen, adrenal glands, and kidneys all appear UNREMARKABLE. Collecting systems are not dilated.
There are postsurgical changes also identified related to distal colon resection [the surgical procedure I had in 2007]. A suture anastomosis line is seen at the rectosigmoid junction. GI tract appears UNREMARKABLE without areas of wall thickening or dilatation [same as dilation]. No developing adenopathy is seen throughout the abdomen and pelvis. No ascites [excess fluid in the space between the tissues lining the abdomen and abdominal organs] is present. Bladder appears UNREMARKABLE.
IMPRESSION:
(1) When compared with prior imaging studies, there are new postsurgical changes related to resection of two metastatic lesions previously seen within the left and right lobes of the liver. No new lesions are identified within the remaining liver parenchyma. Several hepatic [related to the liver] cysts appear stable.
(2) Postsurgical changes related to distal colonic resection.
(3) At this time, there are no findings of metastatic disease within the chest, abdomen, and pelvis.
Sooooo..... can we have a collective woot-woot and a huge sigh of relief? Thank you, thank you very much. My weight is recovering (now at a nice 172 lbs...) and my energy is returning as well. I worked full-time for the past two weeks, and did not even once feel too fatigued during the day to remain at my desk. November is going to FLY by, with trips planned to New Hampshire, Seattle, Manzanita (OR), and Portland, and a huge gathering for Thanksgiving.
Thank you all for your attention - you will now be returned to your regularly scheduled program.
Namaste.
Sunday, October 9, 2011
Stepping forward (and back)
The 2011 treatment regimen is officially complete. May we (please) have seen the last chemical infusion pump...
This second lost year is harder to reflect on than 2007. Then, it seemed like I could just put the whole cancer business behind me, and go on living. I upped my exercise (some might say manically, especially in the cycling department). I remained moderate in drinking alcohol, and backed off on the consumption of red meats (though that too was not high to begin with). I threw myself into work and projects. And we all grew older together. Regular checkups were positive and unremarkable. Unremarkable became a favorite word.
But 2011 feels qualitatively different. The pre-surgery biochemical therapy, the major liver surgery, the post-surgical chemo... all were harder than last time, and there has been a significant jolt to my thinking about life, the universe, and everything. Two steps forward, one step back? Or is it two steps back? I guess I would like to think that some progress has been made, but I am already loathing the CT scan that I have in two weeks. "We are establishing a new baseline" sounds so practical and ominous... but metastases are now no longer hypothetical for me. I fear another crushing blow to my spirit.
But I am working to remember that chemo is done, for now. I am slowly restoring my internal organic activities to some semblance of normal. I still have a few side effects to deal with, but each day is getting better in terms of appetite and energy. We have a lot of fun planned for the next couple of months, and are making firm plans to find someplace warm for a vacation during the cold and rainy period that we call the "holiday season" up here in the Pacific Northwet. Being done with the bi-weekly chemotherapy is a great physical burden lifted from my shoulders. This is a very good thing, and something that I am glad of.
Namasté, my friends!
This second lost year is harder to reflect on than 2007. Then, it seemed like I could just put the whole cancer business behind me, and go on living. I upped my exercise (some might say manically, especially in the cycling department). I remained moderate in drinking alcohol, and backed off on the consumption of red meats (though that too was not high to begin with). I threw myself into work and projects. And we all grew older together. Regular checkups were positive and unremarkable. Unremarkable became a favorite word.
But 2011 feels qualitatively different. The pre-surgery biochemical therapy, the major liver surgery, the post-surgical chemo... all were harder than last time, and there has been a significant jolt to my thinking about life, the universe, and everything. Two steps forward, one step back? Or is it two steps back? I guess I would like to think that some progress has been made, but I am already loathing the CT scan that I have in two weeks. "We are establishing a new baseline" sounds so practical and ominous... but metastases are now no longer hypothetical for me. I fear another crushing blow to my spirit.
But I am working to remember that chemo is done, for now. I am slowly restoring my internal organic activities to some semblance of normal. I still have a few side effects to deal with, but each day is getting better in terms of appetite and energy. We have a lot of fun planned for the next couple of months, and are making firm plans to find someplace warm for a vacation during the cold and rainy period that we call the "holiday season" up here in the Pacific Northwet. Being done with the bi-weekly chemotherapy is a great physical burden lifted from my shoulders. This is a very good thing, and something that I am glad of.
Namasté, my friends!
Thursday, October 6, 2011
Weirdest ride thus far...
So, yesterday was not easy. For those of you playing along at home, my chemo treatments for the past three months have looked something like this - treatment day 1: 2.5 hours of chemical infusions followed by aches and bed rest, but not much sleep due to steroids; treatment day 2: slightly better than day 1, but still receiving 5-FU via portable pump that goes whirrrr-click every couple of minutes and sleep is still evasive; day 3: pump is removed but I receive an injection to stimulate white cell production (which adds to fatigue for the subsequent two days). But by day 5 things are feeling almost normalish.
Yesterday, day 3 of this last cycle, I was "awakened" by my pump beeping like crazy. I was barely asleep anyways, so that was not a big deal, but the pump indicated that there was an "upstream occlusion" and would not be whirrrr-clicking anytime soon. So I managed to silence the incessant beeps, and called the clinic. They said to bring myself in and they would manually pump the remaining chemo (9 mg in solution) into me and disconnect the pump. That is about half of the infusion that I receive at the very end of every day 1 prior to hooking up the pump, and it really knocked me back. To say that this led to a sub-normal day 3 is an understatement... and I did not even have the injection to stimulate my white cell production!
Exercise class ended with me sitting in a chair with my head down, trying to stay conscious. After ten minutes, I regained enough color that my instructor allowed mr to leave. I had a scrambled egg, slept for an hour, then went to a reiki appointment... which usually energizes me. Unfortunately, not this time. It was a busy day, and perhaps I should have slowed down. But with the sad announcement of Steve Jobs' death, I really wanted to seize my day. And every day.
This morning feels pretty good, relatively speaking. I may even try to catch up on some of my workload - which unfortunately does not seem to realize that I am not there! Best part of the morning so far is that I am hungry.
Namasté.
Yesterday, day 3 of this last cycle, I was "awakened" by my pump beeping like crazy. I was barely asleep anyways, so that was not a big deal, but the pump indicated that there was an "upstream occlusion" and would not be whirrrr-clicking anytime soon. So I managed to silence the incessant beeps, and called the clinic. They said to bring myself in and they would manually pump the remaining chemo (9 mg in solution) into me and disconnect the pump. That is about half of the infusion that I receive at the very end of every day 1 prior to hooking up the pump, and it really knocked me back. To say that this led to a sub-normal day 3 is an understatement... and I did not even have the injection to stimulate my white cell production!
Exercise class ended with me sitting in a chair with my head down, trying to stay conscious. After ten minutes, I regained enough color that my instructor allowed mr to leave. I had a scrambled egg, slept for an hour, then went to a reiki appointment... which usually energizes me. Unfortunately, not this time. It was a busy day, and perhaps I should have slowed down. But with the sad announcement of Steve Jobs' death, I really wanted to seize my day. And every day.
This morning feels pretty good, relatively speaking. I may even try to catch up on some of my workload - which unfortunately does not seem to realize that I am not there! Best part of the morning so far is that I am hungry.
Namasté.
Tuesday, October 4, 2011
Energy expended, now what?
Number six is now coursing through my veins, with a little boost of 5-FU every few seconds for the next two days. Fatigue, but not sleepiness,idead and gut aches, warm flashes and dry mouth. No appetite to speak of, and way too much time to think. No googling info on side effects anymore - they are all too familiar.
Called some medical providers today - one to straighten out a toenail fungus cream (leftover from the ingrown toenail treatments in May, I think) and the other to straighten out billing for lab work done in January. Insurance companies are a bane and a boon. Given my extensive treatments over the years, I am happy to have their support. But sometimes things go awry. Alas.
Going to turn out the light now (it's almost 1am) to try sleeping. Wish me luck!
Called some medical providers today - one to straighten out a toenail fungus cream (leftover from the ingrown toenail treatments in May, I think) and the other to straighten out billing for lab work done in January. Insurance companies are a bane and a boon. Given my extensive treatments over the years, I am happy to have their support. But sometimes things go awry. Alas.
Going to turn out the light now (it's almost 1am) to try sleeping. Wish me luck!
Tuesday, September 27, 2011
Where we get energy...
So, the blogger feels like he has once again let himself down on his commitment to post more frequently (and seems to have adopted an annoying habit - referring to his very own self in the third person). As I am sure I have said before, the idea of thinking and writing about my cancer journey has become less appealing as time marches on. Unfortunately, that leaves my loyal readers and supporters in the proverbial dark. And there have certainly been some dark days this year!
Right now, I am in Boise (pronounced "boy-see"), enjoying the marvelous early fall weather and the amazing energy of the National States Geographic Information Council - NSGIC (pronounced "niz-jick"). This is truly one of the most satisfying professional engagements that I have ever had, and this group has had big impacts on the way that geospatial data are created and used all across the nation. Most if not all of the background imagery that we see on GoogleMaps, Bing, Yahoo, etc. is provided by federal/state/local government collaborations, and NSGIC has led that effort for many years. And that is only one small example of the work that NSGIC does year-round. I get a lot of energy from the excellent NSGICers that work diligently year after year to promote the efficient and effective use of geospatial technologies in government, and consider many of these people among my close friends.
It was also wonderful to have a chance to ride 20+ miles with several NSGICers on Sunday morning. Riding along the Boise River in the sunshine was a great reminder of what my near-future will look like. Over the past few years, my return to regular cycling has energized my life and has created a means to re-engage my self in mindful (and healthy) exercise. Planning and accomplishing long rides are a healthy distraction from the difficult reality of next Monday - my final treatment of 2011. So expect to hear about long-ride options that I am considering in future posts!
Namaste.
Right now, I am in Boise (pronounced "boy-see"), enjoying the marvelous early fall weather and the amazing energy of the National States Geographic Information Council - NSGIC (pronounced "niz-jick"). This is truly one of the most satisfying professional engagements that I have ever had, and this group has had big impacts on the way that geospatial data are created and used all across the nation. Most if not all of the background imagery that we see on GoogleMaps, Bing, Yahoo, etc. is provided by federal/state/local government collaborations, and NSGIC has led that effort for many years. And that is only one small example of the work that NSGIC does year-round. I get a lot of energy from the excellent NSGICers that work diligently year after year to promote the efficient and effective use of geospatial technologies in government, and consider many of these people among my close friends.
It was also wonderful to have a chance to ride 20+ miles with several NSGICers on Sunday morning. Riding along the Boise River in the sunshine was a great reminder of what my near-future will look like. Over the past few years, my return to regular cycling has energized my life and has created a means to re-engage my self in mindful (and healthy) exercise. Planning and accomplishing long rides are a healthy distraction from the difficult reality of next Monday - my final treatment of 2011. So expect to hear about long-ride options that I am considering in future posts!
Namaste.
Monday, September 19, 2011
New old news
So, here I sit again, staring out the window into grey cloudy skies that predict an early fall, attempting to drown out the whirrs, clicks, and alarms of the chemo infusion clinic with a healthy dose of Enya. My bloodwork was encouraging this morning, with my neutrophils 'recovered' to a nearly-normal 3000 per milliliter. The bone pain in my left femur was a predicted (and predictable) side effect of the Neulasta shot that I received two weeks ago, and I anticipate another one of those beastly injections on Wednesday to be sure we can finish Chemopalooza 2011 on time. All evidence points to finishing the fifth treatment this week, and then a final transfusion has been scheduled for October 3rd. Woo-hoo.
Karen and I went to the coast this last weekend with three other couples - dear friends that form a wonderful little book club / drinking association. I have been virtually a teetotaler for the past eight months, but let myself get a little wild by having a couple Bud Lite Limes. Lest anyone miss the irony of that, I have long been a fan of handcrafted and small lot beer batches. Local favorites include the Deschutes Obsidian Stout, the Ninkasi Tricerahops, and just about any Oregon-produced India Pale Ale. Drinking Bud Lime is like drinking a weak shandy. But I digress. We had a fun time laughing and playing games together, canoeing in the Siletz Bay, and traipsing around Robert's Book Shop in Lincoln City. It was a perfect relaxative prior to today, and we even got to watch the Packers win.
Namaste.
Karen and I went to the coast this last weekend with three other couples - dear friends that form a wonderful little book club / drinking association. I have been virtually a teetotaler for the past eight months, but let myself get a little wild by having a couple Bud Lite Limes. Lest anyone miss the irony of that, I have long been a fan of handcrafted and small lot beer batches. Local favorites include the Deschutes Obsidian Stout, the Ninkasi Tricerahops, and just about any Oregon-produced India Pale Ale. Drinking Bud Lime is like drinking a weak shandy. But I digress. We had a fun time laughing and playing games together, canoeing in the Siletz Bay, and traipsing around Robert's Book Shop in Lincoln City. It was a perfect relaxative prior to today, and we even got to watch the Packers win.
Namaste.
Subscribe to:
Posts (Atom)
