So, many several years ago, during my graduate school odyssey in central PA, I got a little bit hooked on spelunking. Crawling around in limestone caves (and there are dozens of them - big and small - in central PA) taught me quite a lot about myself. For example, if you do not look around - especially to the rear - you may have a difficult time retracing your steps. And, if you are the least bit concerned about tight spaces, you probably ought to avoid a little section of the J4 cave that is nicknamed "the birth canal." Lessons learned from spelunking definitely can apply to many aspects of above-ground living.
Silence in the blogosphere can provoke many thoughts and conclusions for a blog reader, and I realize that some folks see silence as a harbinger of news they do not want to hear. To be brief and to the point, I am tiring of the constant thought-space invasion that we label 'cancer.' The quotes signify that there are many non-physical characteristics to this ominous word; it's not just the surgery and chemotherapy effects that make up my cancer world. There are the thoughts and hopes for the future - sometimes dim, sometimes bright. There are the constant reminders from others that are newly diagnosed and starting treatment or survivor companions that have been walking a parallel path - that things are different now. And these intrusions into a normal (read - chaotic, unpredictable, semi-planned) life are unpleasant. But they are also uncontrollable.
A cave is an interesting metaphor... we wear headlamps in a cave, so that we can see any distance forward (and backward) at all... we invent tricks that help us understand where we are in reference to where we have been and where we are going... the noise of everyday living is absent (no cell phone reception, no background traffic sounds, only your breathing and the scrabbling echoes of your party's passage underground). Living with cancer feels like a cave sometimes. In the cave, it's all about concentrating on your journey. It can be lonely. It is certainly very dark at times, most notably when you are without a headlamp's light to help you to see. Sometimes, in a cave or in a life, you turn off the lamp - to rely on your other senses for a while. You can hear your own breathing much more clearly, and there are fantastic smells and tiny sounds that you do not hear without consciously trying. Sometimes we need that sensory deprivation in order to recharge.
I remain focused on finishing my six post-surgery chemo treatments. For whatever reason, the infusion days are harder now - I know what the crumminess feels like, and I dread it. I also know that the crummy feelings end and that there are only five more to go, with my next drip session on Tuesday. Please know that I am optimistic and getting stronger every week through exercise and cycling. I have tentative ideas about a bunch of rides for the fall and next year. The darkness is only temporary, and I know where the switch is for my headlamp.
Thanks for your support. I will try to be better about the frequency of my blogging. I promise. :-)
Sunday, July 31, 2011
Monday, July 18, 2011
Chemo, part III
So, started on FOLFIRI again today. Have a feeling that my body is not quite ready for this poison. And only 5 more treatments. Whoopee.
The dexamethasone (anti-nausea glucocorticosteroid, really hypes me up!) seems to have made my eyesight all jittery and my head is achy. I am only comfortable lying down, and my gut is all kerfluffly again. Forced myself to eat some dinner, and back in the bed again. Hope that i am able to get some sleep tonight. Working tomorrow is still a bit of a variable.
I looked up the pharmacokinetics of dexamethasone, and it is resident in plasma for about 10 hours total, but the total time in-body is 36-54 hours. OMG. No wonder I crash on day three! And guess how the stuff is eliminated... Wait for it, wait for it... the liver! Guess we will find out how I am doing in that department real soon too.
Not to worry though, I am still in a good mental place. Oncologist complimented me on my blood work (you know I crammed for that blood test today) and thought my incision was "healing beautifully". And there were no real surprises during the chemotherapy infusion. My buddy Alison came to stay with me and gave me a ride home (after killing me two games out of three at backgammon). She even bought me some lunch. Love her to pieces, I do. And family took care of us at home all afternoon. Thanks tons. Love you guys too.
Done with this newsblog for today. Amen.
The dexamethasone (anti-nausea glucocorticosteroid, really hypes me up!) seems to have made my eyesight all jittery and my head is achy. I am only comfortable lying down, and my gut is all kerfluffly again. Forced myself to eat some dinner, and back in the bed again. Hope that i am able to get some sleep tonight. Working tomorrow is still a bit of a variable.
I looked up the pharmacokinetics of dexamethasone, and it is resident in plasma for about 10 hours total, but the total time in-body is 36-54 hours. OMG. No wonder I crash on day three! And guess how the stuff is eliminated... Wait for it, wait for it... the liver! Guess we will find out how I am doing in that department real soon too.
Not to worry though, I am still in a good mental place. Oncologist complimented me on my blood work (you know I crammed for that blood test today) and thought my incision was "healing beautifully". And there were no real surprises during the chemotherapy infusion. My buddy Alison came to stay with me and gave me a ride home (after killing me two games out of three at backgammon). She even bought me some lunch. Love her to pieces, I do. And family took care of us at home all afternoon. Thanks tons. Love you guys too.
Done with this newsblog for today. Amen.
Monday, July 11, 2011
Clarifications
Two quick things...
(1) All is proceeding apace. My physical recovery is going well, and I am exercising under the supervision of my friend and trainer Nancy. But this does not mean that I am ready for river rafting (did not try this) or for backyard volleyball (tried and failed... stitches are still all secure... :-) ).
(2) The "post date" from the "Dreams" post is correct - it is when I began to draft the post. I only posted it the other day, though, and so it has generated some concern from folks. All remains well in blogland too.
Thanks for staying in touch.
(1) All is proceeding apace. My physical recovery is going well, and I am exercising under the supervision of my friend and trainer Nancy. But this does not mean that I am ready for river rafting (did not try this) or for backyard volleyball (tried and failed... stitches are still all secure... :-) ).
(2) The "post date" from the "Dreams" post is correct - it is when I began to draft the post. I only posted it the other day, though, and so it has generated some concern from folks. All remains well in blogland too.
Thanks for staying in touch.
Thursday, June 30, 2011
Dreams
One of the beautiful frustrations of communicating in English is the way that words can have so many contextual meanings. Take dream for example. It is both a noun and a verb, and it reflects both conscious and subconscious thoughts. We can dream of a fairer future, where justice is both understood and predictable. Or we can dream in our sleep, sorting through the confusion of thoughts, impulses, and observations captured each day and over a lifetime.
So dreams look both to the future and to the past, dreams are both fantastical and mundane, dreams try to make sense of what we are/were/hope to be.
I have been having an interesting couple of weeks in the dreaming department. While we all know that someday our tenure here on Earth will end, there is nothing quite like a recurrence of cancer to focus your attention on the importance of family and friends and the impermanence of stuff. My thoughts have alternated between frantically thinking about the future (you know, retirement savings versus college savings versus mortgage payoff, vacation memories and travel plans that *must* occur, bicycle events that I want to do...) and living in the present. Internal decisions about how I will live over the coming few years - alternative diets, vitamin supplements, exercise regimens, work (and the number of hours to work) - all jumble around in my head.
Then there is that other kind of dream - the ones that arrive unbidden in the night as you try to restore your energy for the coming day... These last few weeks have found me recalling strange dreams - walking through a giant metropolitan marketspace (some kind of retro European space, with basement bars, brick buildings, tons of people, and rich smells) with an assortment of friends, all dressed to attend a wedding and arguing about relationships along the way - or an entire night spent trying to figure out why my clipper sailing ship needed to be filled with balsam logs as ballast rather than granite or iron (as if I have any idea about that topic at all!) I am certain that there is a reasonable pharmaceutical explanation for these dreams, and the fact that I am remembering them in detail, but I do not know what that explanation might be. My brain is knitting together pieces of thoughts and coming up with a story. What a wild tale this must be!
"When I want you, in my arms, when I want you, and all your charms, whenever I want you all I have to do is dream." - Everly Brothers
So dreams look both to the future and to the past, dreams are both fantastical and mundane, dreams try to make sense of what we are/were/hope to be.
I have been having an interesting couple of weeks in the dreaming department. While we all know that someday our tenure here on Earth will end, there is nothing quite like a recurrence of cancer to focus your attention on the importance of family and friends and the impermanence of stuff. My thoughts have alternated between frantically thinking about the future (you know, retirement savings versus college savings versus mortgage payoff, vacation memories and travel plans that *must* occur, bicycle events that I want to do...) and living in the present. Internal decisions about how I will live over the coming few years - alternative diets, vitamin supplements, exercise regimens, work (and the number of hours to work) - all jumble around in my head.
Then there is that other kind of dream - the ones that arrive unbidden in the night as you try to restore your energy for the coming day... These last few weeks have found me recalling strange dreams - walking through a giant metropolitan marketspace (some kind of retro European space, with basement bars, brick buildings, tons of people, and rich smells) with an assortment of friends, all dressed to attend a wedding and arguing about relationships along the way - or an entire night spent trying to figure out why my clipper sailing ship needed to be filled with balsam logs as ballast rather than granite or iron (as if I have any idea about that topic at all!) I am certain that there is a reasonable pharmaceutical explanation for these dreams, and the fact that I am remembering them in detail, but I do not know what that explanation might be. My brain is knitting together pieces of thoughts and coming up with a story. What a wild tale this must be!
"When I want you, in my arms, when I want you, and all your charms, whenever I want you all I have to do is dream." - Everly Brothers
Tuesday, June 28, 2011
Peace and quiet
Dear readers - apparently silence can be rather upsetting and anxiety-building for some people. I am fine, and still marching steadily along the road of physical recovery from surgical intervention number two. My incision is healing nicely, though I am in a constant state of itchiness. This, I am told, is a good thing (but the definition of good has been called into question). I am trying to get back into the work routine, and have been granted permission to work up to 20 hours a week. Still no lifting anything greater than 10 lbs... And sleeping on one's side is not yet an option.
But, I am officially back in the saddle as of this morning... 15 minutes at a modest 70rpm on my stationary bicycle setup. I am thinking that three times a week, gradually increasing my time to an hour, is the recipe for this summer' s cycle training. May be able to do a real road ride in September... I am also allowed to start my exercise class again tomorrow - but no lifting, no abdominal strain, and no twisting. I guess this means leg work (squats and stair climbing), balance, and stretching. But it will help with the creation of new muscle mass, which is the main point of my surgeon's order to eat five meals a day (which is harder to do than it may sound).
All else is good. Next surgical consult is Friday, July 1... more blogging after that.
But, I am officially back in the saddle as of this morning... 15 minutes at a modest 70rpm on my stationary bicycle setup. I am thinking that three times a week, gradually increasing my time to an hour, is the recipe for this summer' s cycle training. May be able to do a real road ride in September... I am also allowed to start my exercise class again tomorrow - but no lifting, no abdominal strain, and no twisting. I guess this means leg work (squats and stair climbing), balance, and stretching. But it will help with the creation of new muscle mass, which is the main point of my surgeon's order to eat five meals a day (which is harder to do than it may sound).
All else is good. Next surgical consult is Friday, July 1... more blogging after that.
Saturday, June 18, 2011
Hot air
So, another five days have elapsed in my journey toward, well, the next place. I continue to recover, and think that I have found the proper combination of medications that will allow me to sleep. Aspirin is my shoulder-pain alleviator, and I am now going to restart the wean-Ed-off-oxycodone process. The abdominal pain has remained steady (and modest) since just after the surgery, and I am sure that the narcotic nightmares will go away once the narcotics do...
But what does any of THAT have to do with hot air, Ed? Excellent question. Almost wish I'd asked it myself. Yesterday, I received a phone call at about 7:30am from a friend that I was planning to see later in the afternoon. I almost did not take the call, as I was actually still in bed and sleepy, but thought that maybe something had come up and he needed to cancel. No big deal. He said hello, and then there was this awful loud static. I wondered where he was, and soon found out that not only was he in a hot air balloon (the loud sound was the gas burner firing to provide some immediate lift), he was landing in Bush Park right outside my bedroom window. Literally. They were about 100 feet from our front door, landing themselves on the park lawn. The sun was bright, the day beckoning... so I went downstairs, got a cup of tea, and watched. Very impressive.
And, as usual, that prompted me to do some thinking. Hot air balloons are relatively simple aircraft. Pump heated air into an enclosed space, and it will lift. Attach a passenger bucket, and you have a transportation system. But the steering can be complicated, and landings are not always smooth and their location can be unpredictable. Winds shift the flight path here and there, and the cooling of the air in the balloon can leave you in an awkward position if you are not paying attention. That may be the reason that balloonists are not as ubiquitous as, say, car drivers. You need to know when to add more hot air, and how much, in order to maintain a steady and enjoyable flight. And you need a team supporting the landing, to protect passengers and balloon alike.
On a regular basis, we all launch metaphorical balloons - perhaps hoping for a change to our daily circumstances. We wonder how much energy (hot air!) to inject, and how to sustain the effort. Sometimes the effort to insert additional hot air is loud, and drowns out all other sounds... We look around for the support we need to make changes (sometimes the support comes from unexpected places). We look around at our environments, our landscape, from a different perspective, and sometimes see what we can (or cannot) do differently. It is good to have trial balloons in our hip-pocket, so that we do not get stuck in place.
We just need to remember that they are there, and to not float too many at one time...
Namaste.
But what does any of THAT have to do with hot air, Ed? Excellent question. Almost wish I'd asked it myself. Yesterday, I received a phone call at about 7:30am from a friend that I was planning to see later in the afternoon. I almost did not take the call, as I was actually still in bed and sleepy, but thought that maybe something had come up and he needed to cancel. No big deal. He said hello, and then there was this awful loud static. I wondered where he was, and soon found out that not only was he in a hot air balloon (the loud sound was the gas burner firing to provide some immediate lift), he was landing in Bush Park right outside my bedroom window. Literally. They were about 100 feet from our front door, landing themselves on the park lawn. The sun was bright, the day beckoning... so I went downstairs, got a cup of tea, and watched. Very impressive.
And, as usual, that prompted me to do some thinking. Hot air balloons are relatively simple aircraft. Pump heated air into an enclosed space, and it will lift. Attach a passenger bucket, and you have a transportation system. But the steering can be complicated, and landings are not always smooth and their location can be unpredictable. Winds shift the flight path here and there, and the cooling of the air in the balloon can leave you in an awkward position if you are not paying attention. That may be the reason that balloonists are not as ubiquitous as, say, car drivers. You need to know when to add more hot air, and how much, in order to maintain a steady and enjoyable flight. And you need a team supporting the landing, to protect passengers and balloon alike.
On a regular basis, we all launch metaphorical balloons - perhaps hoping for a change to our daily circumstances. We wonder how much energy (hot air!) to inject, and how to sustain the effort. Sometimes the effort to insert additional hot air is loud, and drowns out all other sounds... We look around for the support we need to make changes (sometimes the support comes from unexpected places). We look around at our environments, our landscape, from a different perspective, and sometimes see what we can (or cannot) do differently. It is good to have trial balloons in our hip-pocket, so that we do not get stuck in place.
We just need to remember that they are there, and to not float too many at one time...
Namaste.
Monday, June 13, 2011
Upbeat meeting with surgeon today...
Well, things appear to be progressing well. Dr. Billingsley thinks that my incision is healing nicely. He shared with us the OHSU pathology and CT scan reports (I generally need as much information as possible, in case folks don't know or remember that about me from the 2007 cancer adventure), and that clarified many things for me. His only concern, shared by Karen and me, is my weight. For the first time in over 30 years, I weighed in at something less than 160 lbs (158.4 lbs, with clothing on but no shoes, sweatshirt, or pocket paraphernalia). His prescription for me for the next two weeks? Wean myself off the prescription oxycodone (transitioning to tylenol/acetaminophen or aspirin) and eat at least five times a day. He focused a lot of attention on the eating. Thank goodness I managed to build muscle-mass prior to surgery through the RISE fitness program at Salem Hospital!
So, some additional details for my super-curious friends and family...
(1) A normal human male liver weighs a little more than 3 lbs. Based on the pathology report, nearly a pound of my liver was provided for pathological analysis. That means I "lost" about a third of my functional liver during the resection. The exciting news is that about 90% of that resected liver volume will regenerate in four weeks. No wonder I have been so tired!
(2) The "clear margin" around the tumor from my left lobe was 0.6 centimeters, and from the right lobe was 0.1 cm. On the right lobe, the surgeon then resected an additional 0.4 centimeters of liver mass, and that "re-excision" was completely cancer-free. Good news there!
(3) The OHSU CT scan was generally unremarkable or consisted of confirming stuff we already knew (e.g., I have a port installed in my chest with a tube that runs to my heart, and I have some "subclinical foci" in my kidney (probably related to recent kidney stone)). It is great to be unremarkable!
Dr. Billingsley was concerned that I not start the remaining chemotherapy until I have had enough time to recover physically from the surgery. It sounded like maybe the second week in July (?), and he was glad to hear that I have an appointment scheduled with my medical oncologist (Dr. Tiffany) next Monday. We will be discussing chemotherapy with her, too.
Until then it's "Eat Santa, eat! The children expect a fat Santa!" (from Rudolph the Red-Nosed Reindeer)
So, some additional details for my super-curious friends and family...
(1) A normal human male liver weighs a little more than 3 lbs. Based on the pathology report, nearly a pound of my liver was provided for pathological analysis. That means I "lost" about a third of my functional liver during the resection. The exciting news is that about 90% of that resected liver volume will regenerate in four weeks. No wonder I have been so tired!
(2) The "clear margin" around the tumor from my left lobe was 0.6 centimeters, and from the right lobe was 0.1 cm. On the right lobe, the surgeon then resected an additional 0.4 centimeters of liver mass, and that "re-excision" was completely cancer-free. Good news there!
(3) The OHSU CT scan was generally unremarkable or consisted of confirming stuff we already knew (e.g., I have a port installed in my chest with a tube that runs to my heart, and I have some "subclinical foci" in my kidney (probably related to recent kidney stone)). It is great to be unremarkable!
Dr. Billingsley was concerned that I not start the remaining chemotherapy until I have had enough time to recover physically from the surgery. It sounded like maybe the second week in July (?), and he was glad to hear that I have an appointment scheduled with my medical oncologist (Dr. Tiffany) next Monday. We will be discussing chemotherapy with her, too.
Until then it's "Eat Santa, eat! The children expect a fat Santa!" (from Rudolph the Red-Nosed Reindeer)
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