5 years ago today a doctor walked into my exam room and said, “you have cancer.” This blog entry is about that experience. It covers April 28th and 29th of 2005. Before jumping into that event, I looked up the 5 year survival rate. One website (see reference at bottom of post) put the rate for those diagnosed with late stage head & neck cancer at 27%. It feels pretty good to not be in with the 73% of the people who are no longer with us. Although the cost physically, mentally, and financially to me and my family and friends has been high, I take some solace in beating the odds.
A few blog entries ago I had written that I was writing a book on my cancer journey. I have since abandoned that idea as I did not find it a compelling enough story. I did however crank out 100 pages of pretty solid text before coming to this conclusion. My goal was to write a story that gave the reader a true non fairy tale feel for what it is like to walk in the shoes of someone with cancer. The following are 4 pages from my writings that you may find insightful. It begins with my first exposure to the head & neck cancer clinic at M. D. Anderson.
April 28 2005
===========
The patients in the head and neck cancer unit waiting area were generally older than me, but not all of them. One big difference between here and the Sarcoma unit was the evidence of massive facial deformities. An older woman whom I guessed to be in her mid 70s had a piece of gauze straight across the front of her face between her eyes and her lips where her nose should have been. When she turned sideways and the sun from the window backlit her head I could see a straight plain where her nose used to be. This disturbed me. There were people with blue and red markings on their face with indelible marker. There were multiple patients with tracheotomies. I had never seen so much misery in one place. These were images out of a horror movie.
My wife and I stood until two chairs were vacated. After a few hours my name was called. We both got up and went into the clinic. They took my vital signs: weight, blood pressure, and temperature. We were told to go back into the waiting area until an exam room opened up. Every time we asked how long we would be waiting, we were told “you will be seen shortly.” We waited another hour before being brought back to an exam room. Here again we were asked to wait. “How long?,” I asked. We were told the doctor would see us shortly.
A physician’s assistant joins us in the exam room. She examines me and takes down notes on my background. Yes, I smoked during high school. No, I haven’t smoked in over 30 years. Occasionally, I have a glass of wine, nothing else. She finishes with her note taking, says the doctor will be in shortly and leaves. After more waiting my doctor enters the room. He asks similar questions as those asked by his physician assistant. It is late in the day. We had originally come to the Cancer Center for a scheduled early morning Sarcoma exam and now here it was pushing 5:00 P.M. He examines my neck visually and by feel. He maneuvers an endoscope down through my left nostril which gives him a clear view of my pharynx, upper esophagus, upper windpipe, and vocal cords. He asks me to say “eeeeeee” a few times. He removes the endoscope without difficulty. He tells me to open wide and reaches in as far as his gloved right hand can reach and feels the back of my throat and the base of my tongue with his finger. I gag. It is unpleasant. I ask him what he is seeing and feeling. He provides me with no verbal assessment on one hand or assurances on the other. He says he would like to schedule me for a Fine Needle Aspiration (FNA) and to do it as soon as possible, would tomorrow work for me? We learn that he is from Pittsburgh. My wife is from Pittsburgh and I lived and went to undergraduate and graduate school there. This gives us an instant mini-bond. We’re all Steelers fans. Go Steelers. He has me scheduled for a FNA the following afternoon.
We leave there. My wife is under the impression that I have cancer. I am still under the belief that whatever is wrong with me may be cancer, but it could be something less serious. After all, it is just a few swollen lymph nodes. We meet a friend and her spouse for drinks at a restaurant near our home and neither my wife nor I mention how we spent the day.
April 29 2005
===========
I drive down to the Cancer Center the next day, park, and walk the quarter mile to the Fine Needle Aspiration facility. There is a small waiting room and no other patients are there. I check in with the clinic receptionist and my name is called quickly. I’m led to an ordinary looking exam room. There are a few chairs, an exam table with the white paper pullover to help keep it clean between patients, cabinets underneath and above the counter top. There are a few medical exam devices in the room, but nothing out of the ordinary. A female Asian doctor comes in and introduces herself. She feels and gently palpates my neck and lymph nodes. She tells me that she is going to take sample fluid from multiple spots in each swollen lymph node and examine them. She retrieves a huge hypodermic syringe. The needle is about 4 inches long and the syringe can hold 20 milliliters of fluid. I ask if it will hurt. She says a little, but not too bad. I sit in one chair; she sits in the chair next to me. She pokes the needle slowly into my swollen lymph node. She draws some fluid. She repeats this 3 or 4 times. The syringe is almost full. She excuses herself from the exam room. She returns a few minutes later with a new syringe and wants a few more samples. I am of course thrilled because her fluid extraction shrank the size of my lymph nodes by 50%. I asked her to take all the fluid or as much fluid as possible. She repeats her exercise: stab, pull plunger, remove syringe, put syringe in a vertical position with the needle pointing up, push plunger in until all the air is removed, and then repeat. I continued to be thrilled. My swollen lymph nodes were practically gone, my face and neck contour was almost back to normal; it hadn’t been this way for over 2 months. She had succeeded in 10 minutes what a month of antibiotics had been unable to accomplish. She excused herself again.
I liked her. She was nice and the procedure didn’t hurt too badly. She returned two minutes later. She said, “You have cancer.” I was stunned! I had prepared myself for this mentally, but somehow I did not expect it to play out this way. I thought she might come back into the room and say, “we’d like to schedule you for some additional tests” or “my findings were inconclusive.” That’s not what happened. What happened is that in the two minutes she was out of the room, she squirted some of the fluid on a microscope slide, slid the slide under a microscope, looked at it, and quickly and unequivocally came to the conclusion which she unabashedly shared with me in three life-altering words, “you have cancer.” I wasn’t prepared for this. Sure, I liked how my lymph nodes were no longer swollen, but I HAD CANCER. I did not know what to ask, or where to begin. So, I asked if my lymph nodes were now better. How dumb is that? She said they would continue to swell as they fought the cancer. I asked her what type of cancer I had. She was as matter of fact when answering as the women behind the deli counter when you ask about a type of cheese or salami. She said, “You have squamous cell carcinoma.” In asking what I should do next, she said she would send her findings to my doctor and he would be in touch with me. There were a dozen questions I should or could have asked, but I was in a state of shock. I had watched my mom suffocate from lung cancer less than 4 years earlier. She went from appearing perfectly healthy to being dead in 6 months. My siblings, dad, and I spent the last week of her life with her. It was terrible to watch someone you love go from active tennis player to bed-ridden paraplegic in a matter of months.
What was going to happen to me? I was scared. I had cancer.
====================
Reference
http://emedicine.medscape.com/article/1289986-overview
Thursday, April 29, 2010
Friday, April 2, 2010
All Quiet on the Western Front
The literal translation of that title is "Nothing new in the West" with the West being the war. It was a routine dispatch used by German soldiers during World War I.
On March 31st I had blood drawn and clinic visits with my oncologist and surgeon at my cancer center. They did not see anything suspicious, said I looked well, and will schedule me for a follow up in 3 months. That visit will involve a CT scan of my H&N, maybe my chest, and an x-ray. I have been taking a daily chemo pill, Tarceva, for 28 months. My oncologist thought it best for me to continue with this treatment. This all leads back to the above title, there is nothing new with my own personal war on cancer. I'm still in clinical remission having had no evidence of disease for 30 months.
While at the cancer center, I was able to talk to my speech therapist who scheduled me for a modified barium swallow test later that same day. The results this time were different than the test last August. I'm 100% convinced that my anatomy had not changed. The difference was the skill of the therapist performing this test. The test showed some constriction in my esophagus and felt a consult with a gastrointestinal doctor (and a possible esophageal dilation procedure) may yield some progress in my ability to consume additional types of food. I have been living off of Boost nutrition drinks for over 3 years now. It's good, but not that good. I'm encouraged by this latest development.
I was also able to have a great catch up with a friend that works at the cancer center. So, all-in-all a pretty good day.
Stay well and take care.
Ed
On March 31st I had blood drawn and clinic visits with my oncologist and surgeon at my cancer center. They did not see anything suspicious, said I looked well, and will schedule me for a follow up in 3 months. That visit will involve a CT scan of my H&N, maybe my chest, and an x-ray. I have been taking a daily chemo pill, Tarceva, for 28 months. My oncologist thought it best for me to continue with this treatment. This all leads back to the above title, there is nothing new with my own personal war on cancer. I'm still in clinical remission having had no evidence of disease for 30 months.
While at the cancer center, I was able to talk to my speech therapist who scheduled me for a modified barium swallow test later that same day. The results this time were different than the test last August. I'm 100% convinced that my anatomy had not changed. The difference was the skill of the therapist performing this test. The test showed some constriction in my esophagus and felt a consult with a gastrointestinal doctor (and a possible esophageal dilation procedure) may yield some progress in my ability to consume additional types of food. I have been living off of Boost nutrition drinks for over 3 years now. It's good, but not that good. I'm encouraged by this latest development.
I was also able to have a great catch up with a friend that works at the cancer center. So, all-in-all a pretty good day.
Stay well and take care.
Ed
Wednesday, March 24, 2010
Nothing New in ex-Cancerville
One week from today, on March 31 2010, I go in for a quarterly check up with my oncologist and an annual check up with my surgeon. I'll have blood drawn for testing at about 6:00 AM and am scheduled to see both doctors later in the morning. I am not scheduled for any scans and I don't feel any abnormal growths (e.g., lumps or bumps) in my body, so I'm hoping to skate through there without incident (i.e., cancer detection or other concern).
Take care everyone.
Take care everyone.
Tuesday, March 16, 2010
With Cancer, Let’s Face It: Words Are Inadequate
The above title is from an article published in the New York Times Health section today by Dana Jennings. I found it well written and reflected many of my own thoughts since this journey began.
The following is a link to the article and below that, for ease of reference, the article itself.
http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/
With Cancer, Let’s Face It: Words Are Inadequate
by Dana Jennings
March 15 2010
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.
It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.
But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.
I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.
We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.
As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.
It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.
Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.
Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.
Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.
And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.
I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.
The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”
I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.
And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.
Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.
Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.
Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.
Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.
So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.
The following is a link to the article and below that, for ease of reference, the article itself.
http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/
With Cancer, Let’s Face It: Words Are Inadequate
by Dana Jennings
March 15 2010
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.
It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.
But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.
I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.
We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.
As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.
It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.
Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.
Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.
Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.
And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.
I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.
The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”
I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.
And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.
Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.
Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.
Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.
Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.
So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.
Wednesday, February 24, 2010
Roger Ebert
Esquire magazine wrote a great article on Roger Ebert, the well known film critic. He had thyroid cancer which spread to his head and neck. It is a beautifully written piece. Here’s a link to the article...
http://www.esquire.com/features/roger-ebert-0310
The following is an excerpt from the article on page 7 and is so well written by Roger Ebert that I’m including it here for ease of reference…
Ebert is dying in increments, and he is aware of it.
From Roger Ebert... I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear, he writes in a journal entry titled "Go Gently into That Good Night." I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter. You can't say it wasn't interesting. My lifetime's memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.
All for now, stay healthy and take care.
Ed
http://www.esquire.com/features/roger-ebert-0310
The following is an excerpt from the article on page 7 and is so well written by Roger Ebert that I’m including it here for ease of reference…
Ebert is dying in increments, and he is aware of it.
From Roger Ebert... I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear, he writes in a journal entry titled "Go Gently into That Good Night." I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter. You can't say it wasn't interesting. My lifetime's memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.
All for now, stay healthy and take care.
Ed
Friday, February 19, 2010
Advances in DNA Sequencing and the Impact on Cancer Treatment
Johns Hopkins University's Kimmel Cancer Center Researchers took a novel approach in detecting cancer in patients. Instead of looking for tiny DNA changes within cells, they looked for large sections of the genome of tumor cells which have been rearranged. The DNA of tumors varies genetically from that of normal tissue, and the rearrangements are essentially a fingerprint of the cancer.
The findings suggest that by testing blood for this fingerprint, doctors will be able to learn whether a patient treated for cancer is free of disease or needs additional or more aggressive care.
Here’s a link to the article…
http://online.wsj.com/article/SB10001424052748704269004575073640581947242.html?mod=djkeyword
What makes this so important to me and millions of others in remission is the establishment of a clearer path for how long we continue maintenance therapy. To help put this in perspective, my maintenance therapy runs into the five figures annually and there is little evidence based guidance on how long this should continue. As long as this therapy is not harming me, the risk of a head and neck cancer recurrence (in pain, suffering, and dollars) far outweighs the cost of continuing the current maintenance regimen. I suspect there are millions of others in a similar situation.
The above article states that advance in the cost of sequencing a patient's entire genome has fallen sharply—to less than $10,000 now from about $1 million three years ago. Experts predict that the cost will soon get to about $1,000, potentially making it affordable for medical centers to routinely run the genome of patients with cancer and other diseases.
In our need as a nation to reign in health care costs while balancing the quality of care, this has the potential within the next 5 years to begin saving billions of dollars, yes that’s billions, without sacrificing health care quality.
Stay healthy and take care.
Ed
The findings suggest that by testing blood for this fingerprint, doctors will be able to learn whether a patient treated for cancer is free of disease or needs additional or more aggressive care.
Here’s a link to the article…
http://online.wsj.com/article/SB10001424052748704269004575073640581947242.html?mod=djkeyword
What makes this so important to me and millions of others in remission is the establishment of a clearer path for how long we continue maintenance therapy. To help put this in perspective, my maintenance therapy runs into the five figures annually and there is little evidence based guidance on how long this should continue. As long as this therapy is not harming me, the risk of a head and neck cancer recurrence (in pain, suffering, and dollars) far outweighs the cost of continuing the current maintenance regimen. I suspect there are millions of others in a similar situation.
The above article states that advance in the cost of sequencing a patient's entire genome has fallen sharply—to less than $10,000 now from about $1 million three years ago. Experts predict that the cost will soon get to about $1,000, potentially making it affordable for medical centers to routinely run the genome of patients with cancer and other diseases.
In our need as a nation to reign in health care costs while balancing the quality of care, this has the potential within the next 5 years to begin saving billions of dollars, yes that’s billions, without sacrificing health care quality.
Stay healthy and take care.
Ed
Tuesday, February 9, 2010
“Cancer cure” or “I Am Legend.” Time will tell
A friend sent me an article this past weekend on a new drug in a phase II clinical trial for squamous cell carcinoma of the head and neck (basically head and neck cancer). The drug is Reolysin and is owned by Oncolytics Biotech (ONCY) based in Alberta Canada. It is nearing completion of a phase II trial for head and neck cancer and has shown a positive response on 42% of the patients compared to 10% in the control group.
Reolysin is derived from a virus. According to this article, the virus is harmless to healthy human cells. One of the primary issues with chemotherapies is targeting the cancer cells while leaving the healthy cells alone. Cells have pathways and scientists and cancer researchers have been using different cell pathways to specifically target cancer cells.
This drug is attracted to the Ras pathway which is turned on in many cancer cells and turned off in healthy cells. Reolysin is infused into the body daily over a few day time period. The virus enters the cancer cells via the Ras pathway, multiplies, and overwhelms the cell until it dies leaving all healthy cells alone. The virus dies along with the cancer cell. This is pretty remarkable stuff.
The success of the phase II trial is prompting active planning for a phase III trial. Here is a link to the article…
http://www.dailyfinance.com/story/this-virus-could-be-the-answer-to-cancer/19344145/
For those that did not see the movie "I Am Legend" staring Will Smith, the storyline is a cancer vaccine derived from a virus which turns 90% plus of the population into flesh eating zombies who are killing the remaining human race.
Stay healthy and take care.
Ed
Reolysin is derived from a virus. According to this article, the virus is harmless to healthy human cells. One of the primary issues with chemotherapies is targeting the cancer cells while leaving the healthy cells alone. Cells have pathways and scientists and cancer researchers have been using different cell pathways to specifically target cancer cells.
This drug is attracted to the Ras pathway which is turned on in many cancer cells and turned off in healthy cells. Reolysin is infused into the body daily over a few day time period. The virus enters the cancer cells via the Ras pathway, multiplies, and overwhelms the cell until it dies leaving all healthy cells alone. The virus dies along with the cancer cell. This is pretty remarkable stuff.
The success of the phase II trial is prompting active planning for a phase III trial. Here is a link to the article…
http://www.dailyfinance.com/story/this-virus-could-be-the-answer-to-cancer/19344145/
For those that did not see the movie "I Am Legend" staring Will Smith, the storyline is a cancer vaccine derived from a virus which turns 90% plus of the population into flesh eating zombies who are killing the remaining human race.
Stay healthy and take care.
Ed
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