This morning, between walking this dog and my thrice-weekly trip to the Fitness Center, I was exposed to three news items: (1) the Obama-Cheney exchange on security policy (WSJ); (2) Lymphoma-afflicted Daniel Hanson's abduction by his mother (CNN); and (3) "Cougars," the sobriquet for 40+ women who frequent bars trolling for young men, on the way to becoming a reality TV show (CNN).
I was gobsmacked** by the moral and ethical issues represented and the seemingly irresolvable dilemmas they represent. In the first instance, we loudly descry, condemn, and eschew "torture" of terrorists, the consequence of which may be saving thousands, even, in the case of the use of nuclear or biological materials, hundreds of thousands if lives. In the second instance, by creating the illusion of free choice, we support and applaud the coercion of children and adults into being tortured by chemotherapy on the possibility of saving one life, even at the cost significantly reducing the person's quality of life, and to make matters worse, issuing an arrest warrant for a parent who undoubtedly believes she is doing the "right thing for her child.". (See my prior post, "Evaluating Options," May 21, 2009).
What a pickle! If nothing else, we have become a society that is consistent in it's inconsistency.
The third instance confirms this observation. Predatory women out for sex are called "cougers," derided and laughed at. Predatory men trolling for sex are called "studs," and admired by their wimpy peers.
Is there a Stage 5 for cultural "cancers?"
**"Gobsmacked" - English slang for "unexpectedly stupendously, stunned"
Friday, May 22, 2009
Thursday, May 21, 2009
Evaluating Options
In April 2005, two years after the initial diagnosis of melanoma in my right ear (Stage 1), I developed a tumor in a lymph gland on the right side of my neck (Stage 3). I was offered two options: (1) radical neck dissection to remove the tumor and all identifiable lymph glands in the vicinity; and (2) chemotherapy, followed by surgical removal of the tumor. The former was to be done at St. Mary's in Grand Junction , the latter at University of Colorado Medical Center in Denver.
I went down to Denver to learn more about the chemo option. During the pre-admission interview, I asked the nurse for a graph of survival rates. Apparently, no one had asked for one before and she had (a) to find it, then (b) get permission to show it to me. This struck me as slightly weird unless the people you deal with are in extreme denial or don't care how quickly they might die. The annotated chart below is an updated version similar, but more elaborate, to the one I saw.
The treatment consisted of a cocktail of 6 or 7 toxic chemicals, each of which had shown some positive effect on melanoma. The side effects, as I understod them, were pretty horrendous - total incapacitation for 6 - 8 weeks, with a potential 40% weight loss. With some more strenuous digging, I finally deduced the that a successful treatment might improve my survival rate by about 3%.
The capper was when the doctor returned after about 40 minutes, his first comment was to the nurse, "What, he's still here? What are you doing making him your life work?"
She was obviously embarassed, I was slighty stunned, "Well, I thought, "I certainly hope so."
In any event, my conclusion was the that risk-reward did not warrant the reduction in the quality of my life and this wasn't the place for me.
Lessons Learned: Gather as much hard data as you can before making any decisions and don't ignore the human factors.
These graphs compare the relative survival up to 15 years for patients with localized melanoma (stages II and I), regional metastases (stage III), and distant metastases (stage IV). The numbers in parentheses represent the number of patients from the AJCC melanoma staging database used to calculate the survival rates. The differences between the curves are significant (p <.0001). Data from: Balch, CM, Buziad, AC, Seng-Jaw, S, et al. Final version of the American Joint Committee on Cancer staging system for cutaneous melanoma. J Clin Oncol 2001; 19:3636.
I went down to Denver to learn more about the chemo option. During the pre-admission interview, I asked the nurse for a graph of survival rates. Apparently, no one had asked for one before and she had (a) to find it, then (b) get permission to show it to me. This struck me as slightly weird unless the people you deal with are in extreme denial or don't care how quickly they might die. The annotated chart below is an updated version similar, but more elaborate, to the one I saw.
The treatment consisted of a cocktail of 6 or 7 toxic chemicals, each of which had shown some positive effect on melanoma. The side effects, as I understod them, were pretty horrendous - total incapacitation for 6 - 8 weeks, with a potential 40% weight loss. With some more strenuous digging, I finally deduced the that a successful treatment might improve my survival rate by about 3%.
The capper was when the doctor returned after about 40 minutes, his first comment was to the nurse, "What, he's still here? What are you doing making him your life work?"
She was obviously embarassed, I was slighty stunned, "Well, I thought, "I certainly hope so."
In any event, my conclusion was the that risk-reward did not warrant the reduction in the quality of my life and this wasn't the place for me.
Lessons Learned: Gather as much hard data as you can before making any decisions and don't ignore the human factors.
These graphs compare the relative survival up to 15 years for patients with localized melanoma (stages II and I), regional metastases (stage III), and distant metastases (stage IV). The numbers in parentheses represent the number of patients from the AJCC melanoma staging database used to calculate the survival rates. The differences between the curves are significant (p <.0001). Data from: Balch, CM, Buziad, AC, Seng-Jaw, S, et al. Final version of the American Joint Committee on Cancer staging system for cutaneous melanoma. J Clin Oncol 2001; 19:3636.
Music to Make You Smile
I had the privilege of meeting Mack Bailey when he played at an Aspen Chapel concert service several years ago. His Mom had succumbed to cancer in 2003. His song"Choose Your Attitude" and the album of the same name, were written and compiled at the time. According to Mack, "The saying was my mom's mantra during her last year."
I also included his "No Longer Afraid" from the same album. If you're feeling a bit down about life, I urge you to listen to both songs. When you do, I think you'll feel renewed, as I do.
Please note: Because the the limitations of Blogger to host audio files, it is necessary to use a third-party host. To avoid copyright infringement issues, please do not download these songs to your computer. You may listen to them by choosing the "Play" option. (First, turn off any music players in use). If you wish to download a song for your own use, please use iTunes or the music source of your choice. Thank you.
Choose Your Attitude, Mack Bailey/Chris Nole
No Longer Afraid, V. Buddy Renfro/Mack Bailey
Produced at The Parlor in Nashville, TN by Chris Nole
2006 Copyright Spa Creek Music, ASCAP All rights Reserved.
Recorded by an All-Star crew including Sam Bush playing fiddle on these cuts.
I also included his "No Longer Afraid" from the same album. If you're feeling a bit down about life, I urge you to listen to both songs. When you do, I think you'll feel renewed, as I do.
Please note: Because the the limitations of Blogger to host audio files, it is necessary to use a third-party host. To avoid copyright infringement issues, please do not download these songs to your computer. You may listen to them by choosing the "Play" option. (First, turn off any music players in use). If you wish to download a song for your own use, please use iTunes or the music source of your choice. Thank you.
Choose Your Attitude, Mack Bailey/Chris Nole
No Longer Afraid, V. Buddy Renfro/Mack Bailey
Produced at The Parlor in Nashville, TN by Chris Nole
2006 Copyright Spa Creek Music, ASCAP All rights Reserved.
Recorded by an All-Star crew including Sam Bush playing fiddle on these cuts.
Wednesday, May 20, 2009
My first Cyberknife Session
A day at the beach - After the predictable wait, I was given three small pills, two steroids to minimize swelling, and one sedative. After that I had a semi-nap for 90 minutes immobile on the Cyberknife table, while it did its robotic thing through three cycles of zapping me at the rate of about 1/minute from a multitude of different angles. I couldn't help thinking about it as a robotic laser welder on an auto assembly line. (I was assured no touch, no heat without having to ask).
There was a pause between cycles for the technician to change the collimator.** Apart from a slightly stiff neck when I got up, there were no detectable effects during or after the treatment, other than a slightly elevated blood pressure.
If it works, it's a great way to deal with an otherwise inaccessible location. It's shown to be highly effective with pancreatic, liver, lung, brain, and kidney tumors. I asked the technician if she had ever done one on the heart before. She said "...we've never done one here before, but I think there was one other, maybe in California." The Cyberknife Coordinator subsequently confirmed that mine was their first such treatment.
Hoo Haa - first on the block again!
**A device capable of collimating radiation, as a long narrow tube in which strongly absorbing or reflecting walls permit only radiation traveling parallel to the tube axis to traverse the entire length. For non-geeks, think of it as a hose nozzle or shotgun choke.
There was a pause between cycles for the technician to change the collimator.** Apart from a slightly stiff neck when I got up, there were no detectable effects during or after the treatment, other than a slightly elevated blood pressure.
If it works, it's a great way to deal with an otherwise inaccessible location. It's shown to be highly effective with pancreatic, liver, lung, brain, and kidney tumors. I asked the technician if she had ever done one on the heart before. She said "...we've never done one here before, but I think there was one other, maybe in California." The Cyberknife Coordinator subsequently confirmed that mine was their first such treatment.
Hoo Haa - first on the block again!
**A device capable of collimating radiation, as a long narrow tube in which strongly absorbing or reflecting walls permit only radiation traveling parallel to the tube axis to traverse the entire length. For non-geeks, think of it as a hose nozzle or shotgun choke.
On the Opaque Language of Medicine...
Talking with a doctor is akin to a calf crossing a meadow of succulent grasses - from the patient's point of view, the conversation tends to wander unpredictably, often into areas where the terminology is unfamiliar at best, totally opaque or misleading at worst.
In my initial discussion of treatment options, I heard my condition described as "unique" and that I was an "outlier." I understand the former and, as a statistician, the implications of the latter, so I pretty well knew the unvoiced meaning - the doctors didn't have any data or prior experience about how to approach my problem.
The CT surgeon, initially proposed open-heart surgery, promising to do more research, subsequently deciding it was too risky, leaving radiation as the only alternative. The radiation oncologist told me he had found "a very limited number of somewhat similar" situations in which radiation had been successful a very high percentage of the time, which in statistical terms means little, which he voluntarily admitted.
The remaining options, were euphemistically "watchful waiting," a clinical trial which might take months to find, if ever, and radiation using Cyberknife, which is non-invasive and offered at least the hope of an immediate successful treatment, even though they couldn't insert the markers used for accurate targetting -- Hookay, guess which one I chose.
In describing radiation treatment, the term "palliation" was used several times. I know what palliative care means (keep them comfortable until the pop off), but I'd never heard the term used as a noun. I didn't like the implication of this, so I used my Alt-Click to look it up on Answers.com:
Pal·li·a·tion
n.
In my initial discussion of treatment options, I heard my condition described as "unique" and that I was an "outlier." I understand the former and, as a statistician, the implications of the latter, so I pretty well knew the unvoiced meaning - the doctors didn't have any data or prior experience about how to approach my problem.
The CT surgeon, initially proposed open-heart surgery, promising to do more research, subsequently deciding it was too risky, leaving radiation as the only alternative. The radiation oncologist told me he had found "a very limited number of somewhat similar" situations in which radiation had been successful a very high percentage of the time, which in statistical terms means little, which he voluntarily admitted.
The remaining options, were euphemistically "watchful waiting," a clinical trial which might take months to find, if ever, and radiation using Cyberknife, which is non-invasive and offered at least the hope of an immediate successful treatment, even though they couldn't insert the markers used for accurate targetting -- Hookay, guess which one I chose.
In describing radiation treatment, the term "palliation" was used several times. I know what palliative care means (keep them comfortable until the pop off), but I'd never heard the term used as a noun. I didn't like the implication of this, so I used my Alt-Click to look it up on Answers.com:
Pal·li·a·tion
n.
[Cf. F. palliation.]
1. The act of palliating, or state of being palliated; extenuation; excuse; as, the palliation of faults, offenses, vices.
2. Mitigation; alleviation, as of a disease. Bacon.
3. That which cloaks or covers; disguise; also, the state of being covered or disguised. [Obs.]
Hmmm, not exactly what I hoped to see - elimination, cessation, eradication, gone bye-bye
Tuesday, May 19, 2009
What's It All About
Yesterday, I had my first Cyberknife* treatment at UNC Medical Center for a Melanoma met on, or immediately adjacent to my heart, with two more treatments to follow this week. (I'm telling people it's my week off to get a sun tan). Early this morning, really early this morning, I was lying awake thinking trivial thoughts about little things like, "what do I do next if this doesn't work," other unfinished business," and "how do I really feel about the prospect of dying."
This blog will, I hope, serve several useful purposes: A place to capture these musings for further analysis and reflection at a more appropriate hour; a place to share my learnings and experiences in the hope it will be of use to others; and a place for others to contribute their thoughts and resources that may be of value to me.
Sounds a bit self-serving, but I suspect those of you in similar circumstances will forgive me for my interest in seeking and finding help from any useful source.
In the sidebar you will find, lists of books, articles, and webs sites, Facebook, LinkedIn, and Twitter groups, and other social media sources. Feel free to contribute your own sources, suggestions, and thoughts. If there is enough interest and need to warrent a wiki or Ning social network site, I'll be glad to create one as a means of facilitating the exchange as a multilog.
In the meantime, "Live long and prosper." ( Sorry, I just saw the new Star Trek Sunday)
*If you are intersted in learning more about Cyberknife, please go to UNC Cyberknife.
This blog will, I hope, serve several useful purposes: A place to capture these musings for further analysis and reflection at a more appropriate hour; a place to share my learnings and experiences in the hope it will be of use to others; and a place for others to contribute their thoughts and resources that may be of value to me.
Sounds a bit self-serving, but I suspect those of you in similar circumstances will forgive me for my interest in seeking and finding help from any useful source.
In the sidebar you will find, lists of books, articles, and webs sites, Facebook, LinkedIn, and Twitter groups, and other social media sources. Feel free to contribute your own sources, suggestions, and thoughts. If there is enough interest and need to warrent a wiki or Ning social network site, I'll be glad to create one as a means of facilitating the exchange as a multilog.
In the meantime, "Live long and prosper." ( Sorry, I just saw the new Star Trek Sunday)
*If you are intersted in learning more about Cyberknife, please go to UNC Cyberknife.
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