I spend my fair share of time on the www. I have come across two websites recently that have stood out above the fray. One is dedicated to head & neck cancer; the other is for a wide range of cancers.
The first is the Oral Cancer Foundation at…
http://oralcancerfoundation.org/
They have the most complete site dedicated to H&N cancer for everything from diagnosis to rehabilitation. The section on “Emotional aspects” and within that “Survivors – What Now?” is what caught my attention. Here’s a link directly to that section (it has 2 parts)…
http://oralcancerfoundation.org/emotional/survivors_1.htm.
Until one goes through this experience, it is difficult to fathom the impact it has on one’s psyche. This section resonated with me and confirmed that I am not overreacting to my current circumstances. I found it helpful and wanted to pass the information on to others.
The second site is CancerCompass at…
http://www.cancercompass.com/
They have an active forum (message board) section covering 35 different cancers. The direct link to this section on their website is…
http://www.cancercompass.com/message-board.htm
In reading the posts and responses for head & neck cancer, this site has quickly grown an active and knowledgeable community that has been there and done that. I can’t speak directly for the other cancers, but I doubt you will be disappointed. Again, it covers the gamut from diagnosis to rehabilitation. There are also caregiver perspectives.
Dealing with cancer is tough. But, these sites make it a bit easier.
Take care.
Ed
Friday, January 29, 2010
Tuesday, January 5, 2010
Quick Health Update
Happy New Year 2010!
I had a blood draw, head & neck CT scan, and clinic visit with my oncologist on 12/30/09. My health remains stable. My doctor used a term in his follow up written clinic report with which I was not familiar. He said I was in "clinical remission." Up until this point, I had been in a state of "no evidence of disease (NED)." I can not find an exact definition of clinical remission, but I infer from my Internet searches that it means the following: as a result of my ongoing treatment, my disease is not detectable. He has left me on a daily chemo drug, 100 mg of Tarceva. There are limited guidelines as to how long I should continue this treatment, but since I am tolerating it well, the risk of a cancer recurrence outweighs the current side effects. My next scheduled visit is in three months.
As to my psychological state, I feel trapped, both physically and mentally. I could write about this, but for now, I'll leave it at that.
Take care and great health during this new decade.
Ed
I had a blood draw, head & neck CT scan, and clinic visit with my oncologist on 12/30/09. My health remains stable. My doctor used a term in his follow up written clinic report with which I was not familiar. He said I was in "clinical remission." Up until this point, I had been in a state of "no evidence of disease (NED)." I can not find an exact definition of clinical remission, but I infer from my Internet searches that it means the following: as a result of my ongoing treatment, my disease is not detectable. He has left me on a daily chemo drug, 100 mg of Tarceva. There are limited guidelines as to how long I should continue this treatment, but since I am tolerating it well, the risk of a cancer recurrence outweighs the current side effects. My next scheduled visit is in three months.
As to my psychological state, I feel trapped, both physically and mentally. I could write about this, but for now, I'll leave it at that.
Take care and great health during this new decade.
Ed
Sunday, December 13, 2009
December 13 2009 - It's my Cancer Anniversary
Three years ago today on December 13 2006 I received terrible news of a major cancer recurrence. The CT scan showed five inoperable tumor hot spots in my throat and oral cavity. My surgeon suggested that the palliatative care unit was a reasonable option. That is a group most commonly known for helping to make you comfortable via pain management and psychological counselling but without treatment or the hope of a cure for your disease. At that time I had made major strides towards a recovery from an extensive surgery five months earlier and was considering going back to work. In addition to becoming a patient in the palliatative care unit, I also met with my oncologist and one week later began an endless non-stop regimen of different chemotherapies, one of which continues three years later as I write this blog entry. Last year and the year before on this date, I wrote about that day in 2006 and said that I hoped to be able to write about it again the following year. Well, as Jimmy Buffet named his nationwide tour last year, “The Year of Still Here.” Well, I’m still here too.
On the health front, I have been in a state of no evidence of disease (NED) for 26 months. That is remarkable. It has not been an easy three years. Long term chemotherapy is physically tough on my body. I have neuropathy in my toes and the balls of my feet, I’m constantly chilled, I have severe aches, pains, and cramps at times, and my muscle tone is less than it should be. I feel like I’ve aged 25 years physically in the last 3 years. I’m 57, but that puts me in the body of an 80+ year old. Plus, I have eating and speaking disabilities. I won’t address them in this blog entry as they have been addressed ad nauseum in past entries. I frequently ask myself, “Why go on?” “Why not just give up?”
The answer is: 1) because I’m stubborn and 2) I don’t think my purpose on this planet is yet complete. Plus, among the physical hardships, life is still good. I visited with 90% of every close friend and relative at least once this past year. We spent quality time together. Some of these people I had not seen since before I had become ill in April 2005. It was so good to see everyone and to see how well they are doing in their lives. If you are one of those 90%, please know how much once again I enjoyed our visit(s). I continue to try to shape my daughter into the grownup I hope she will become someday. We visited six Ivy League college campuses over her spring break. I’m currently teaching her to drive under the firm belief that I’ll do a more thorough job than she will get from a Driver's Education course. (My driving instruction is supplemented by an online driver's ed course.) I took two courses this year; one of which was on writing a non-fiction book held at Rice University, and the other was in analyzing a company’s financial statements at Lone Star College. The latter was a tough course, but I aced it. Although my body is compromised, my mind is still intact. I read some great books this year: The Snowball (a 900+ page authorized biography of Warren Buffet), The Big Rich, The Help, A Million Little Pieces, Nothing To Lose, Gargoyle, and many others. The course at Rice University gave me a finer appreciation for how tough it is write a great book. I began writing a book on my cancer experience. It is a long term work in progress.
People undergoing cancer treatment pass through different phases. I have passed through the period of intense treatment. The intense treatment phase lasted over two years. I do not intend to offend anyone who has been on active duty in a war zone in our Country’s armed services with my next statement, but I feel that intense cancer treatment is similar to being in the heat of physical battle. The enemy is cancer, the treatment is tortuous, painful, and physically and mentally exhausting, and one’s very existence is continually tested. In me it created symptoms similar to post traumatic stress syndrome (PTSD). With the help of a psychologist I have passed through that phase. I’m now looking with some optimism at how to make my best of the time left on this earth. I’m still looking to make a positive contribution. I volunteered to become involved in three worthy causes this year. I was accepted by none of them, but I’m keeping my eyes and ears open for good future opportunities. I hope to find something meaningful before my time runs out. Long term serious illnesses reinforce the reality of mortality.
On a more tactical note, I have my quarterly cancer checkup at the end of this month. I’ll have blood work, a CT scan of my head & neck area, and a visit with my oncologist. I currently feel okay physically. I also felt okay three years ago today when I got that terrible diagnosis. I hope my check up will be a non event. I do have some anxiety about it and will share the results with you all in January.
One last note before signing off… Cancer has also taught me how important love and hope is. I don’t know how to quantify that, but I do know that it plays a huge role in my life with my family and close friends.
Stay healthy and Happy New Year!
Ed
On the health front, I have been in a state of no evidence of disease (NED) for 26 months. That is remarkable. It has not been an easy three years. Long term chemotherapy is physically tough on my body. I have neuropathy in my toes and the balls of my feet, I’m constantly chilled, I have severe aches, pains, and cramps at times, and my muscle tone is less than it should be. I feel like I’ve aged 25 years physically in the last 3 years. I’m 57, but that puts me in the body of an 80+ year old. Plus, I have eating and speaking disabilities. I won’t address them in this blog entry as they have been addressed ad nauseum in past entries. I frequently ask myself, “Why go on?” “Why not just give up?”
The answer is: 1) because I’m stubborn and 2) I don’t think my purpose on this planet is yet complete. Plus, among the physical hardships, life is still good. I visited with 90% of every close friend and relative at least once this past year. We spent quality time together. Some of these people I had not seen since before I had become ill in April 2005. It was so good to see everyone and to see how well they are doing in their lives. If you are one of those 90%, please know how much once again I enjoyed our visit(s). I continue to try to shape my daughter into the grownup I hope she will become someday. We visited six Ivy League college campuses over her spring break. I’m currently teaching her to drive under the firm belief that I’ll do a more thorough job than she will get from a Driver's Education course. (My driving instruction is supplemented by an online driver's ed course.) I took two courses this year; one of which was on writing a non-fiction book held at Rice University, and the other was in analyzing a company’s financial statements at Lone Star College. The latter was a tough course, but I aced it. Although my body is compromised, my mind is still intact. I read some great books this year: The Snowball (a 900+ page authorized biography of Warren Buffet), The Big Rich, The Help, A Million Little Pieces, Nothing To Lose, Gargoyle, and many others. The course at Rice University gave me a finer appreciation for how tough it is write a great book. I began writing a book on my cancer experience. It is a long term work in progress.
People undergoing cancer treatment pass through different phases. I have passed through the period of intense treatment. The intense treatment phase lasted over two years. I do not intend to offend anyone who has been on active duty in a war zone in our Country’s armed services with my next statement, but I feel that intense cancer treatment is similar to being in the heat of physical battle. The enemy is cancer, the treatment is tortuous, painful, and physically and mentally exhausting, and one’s very existence is continually tested. In me it created symptoms similar to post traumatic stress syndrome (PTSD). With the help of a psychologist I have passed through that phase. I’m now looking with some optimism at how to make my best of the time left on this earth. I’m still looking to make a positive contribution. I volunteered to become involved in three worthy causes this year. I was accepted by none of them, but I’m keeping my eyes and ears open for good future opportunities. I hope to find something meaningful before my time runs out. Long term serious illnesses reinforce the reality of mortality.
On a more tactical note, I have my quarterly cancer checkup at the end of this month. I’ll have blood work, a CT scan of my head & neck area, and a visit with my oncologist. I currently feel okay physically. I also felt okay three years ago today when I got that terrible diagnosis. I hope my check up will be a non event. I do have some anxiety about it and will share the results with you all in January.
One last note before signing off… Cancer has also taught me how important love and hope is. I don’t know how to quantify that, but I do know that it plays a huge role in my life with my family and close friends.
Stay healthy and Happy New Year!
Ed
Thursday, October 8, 2009
I’ve become a Hypochondriac…
I wasn’t always a hypochondriac, but it is another side effect of my disease. Every ache and pain becomes a potential deadly form of cancer. 90% of the time I keep myself in check and wait until I have a clinic visit to share my concerns. For the most part, they are just that, concerns, not deadly diseases. In reading the following article from yesterday’s Philadelphia Inquirer, I had to laugh. Although the author is a 7 year survivor of breast cancer, she still recognizes each malady as her imminent cause of death. I don’t know if those who have not had a serious disease will find this humorous, but there are enough of us out there, that I’ll share the article here.
Take care everyone.
==================
The Philadelphia Inquirer
October 7, 2009
More than the sum of my medical records Cancer survivors need doctors to know their names.
By Missy Stein
October has arrived, and so has Breast Cancer Awareness Month, as it has come to be known since 1985. For me and others who have been affected by the disease, breast cancer is something we are aware of 12 months a year. For the rest of the world, designating this month provides an opportunity for special events, media attention, and bringing a number of issues related to breast cancer to the forefront. I have one that doesn't get much attention.
As a seven-year survivor of breast cancer, I am a cancer graduate. In other words, I've reached that stratospheric level where I have to visit the oncologist only once a year for an unceremonious checkup.
I recently switched from a doctor I had been seeing at Fox Chase Cancer Center for four years to a doctor at the University of Pennsylvania. My impetus was a letter I received after reaching the point where I had survived five years and was therefore no longer considered to be at high risk.
I had been seeing an oncologist regularly every six months, as is customary for a survivor who has finished treatment. Then, much to my surprise, not long before my first post-five-year annual appointment, I received a form letter from a nurse at Fox Chase. She informed me that I would no longer be seeing the doctor, and that my appointments would be with her from then on. And that was my last contact with Fox Chase, other than having the center transfer my records to Penn.
I recently had my second visit with my new, young, smart, spunky, talented doctor at the Rena Rowen Breast Center at Penn. And the best part was that she knew my name! I mean, she knew who I was without looking at my records.
She didn't ask me when my last mammogram was, because she actually remembered that I had bilateral mastectomies. She asked me about my husband and referred to the fact that he is a rabbi. And she told me that, within three weeks of my transfer to her, three other patients were referred to her for the same reason.
Yes, we are survivors, but for every ache and pain that another person would forget about after taking a Tylenol, we think we have cancer. During my annual visits, when the oncologist asks me if I've had any health issues since we last met, my joking reply is, "Yes, I've had elbow cancer and neck cancer, but I'm fine now."
When you are in the midst of breast cancer treatment, your doctors and nurses become a part of your life. The breast surgeon and plastic surgeon become friends you look forward to seeing, even if you have to sit in their well-decorated waiting rooms for more than an hour.
And if you go through chemotherapy, as I did, the oncologist and the oncology nurses are people you see several times a month, who comfort you when you think you just can't do it anymore, and who laugh with you when you recount the story of how, halfway through your conversation with the UPS guy, you realized you forgot to put something on your bald head before you answered the door.
They know about your frightened children, your crazy in-laws, and the friend who brought you dinner. I didn't realize how much I missed that until I walked out of my appointment with my new doctor that day. I guess I'd been worn down.
Seven years ago, when I had five small children, I gave it my all. I found the best doctors, and I went through a 14-hour surgery and six months of chemotherapy. I learned to be an advocate for myself in every aspect of my treatment, always rising to the challenge.
Over the past few years, though, I'd let my guard down. I'd settled for being just another medical record.
But those days are over. Today I want to say "thank you" to my new doctor for saying my name - not "Mrs. Stein," not "Melissa," but the same name that I introduced myself with when I walked into her office for the first time: Missy.
I wasn’t always a hypochondriac, but it is another side effect of my disease. Every ache and pain becomes a potential deadly form of cancer. 90% of the time I keep myself in check and wait until I have a clinic visit to share my concerns. For the most part, they are just that, concerns, not deadly diseases. In reading the following article from yesterday’s Philadelphia Inquirer, I had to laugh. Although the author is a 7 year survivor of breast cancer, she still recognizes each malady as her imminent cause of death. I don’t know if those who have not had a serious disease will find this humorous, but there are enough of us out there, that I’ll share the article here.
Take care everyone.
==================
The Philadelphia Inquirer
October 7, 2009
More than the sum of my medical records Cancer survivors need doctors to know their names.
By Missy Stein
October has arrived, and so has Breast Cancer Awareness Month, as it has come to be known since 1985. For me and others who have been affected by the disease, breast cancer is something we are aware of 12 months a year. For the rest of the world, designating this month provides an opportunity for special events, media attention, and bringing a number of issues related to breast cancer to the forefront. I have one that doesn't get much attention.
As a seven-year survivor of breast cancer, I am a cancer graduate. In other words, I've reached that stratospheric level where I have to visit the oncologist only once a year for an unceremonious checkup.
I recently switched from a doctor I had been seeing at Fox Chase Cancer Center for four years to a doctor at the University of Pennsylvania. My impetus was a letter I received after reaching the point where I had survived five years and was therefore no longer considered to be at high risk.
I had been seeing an oncologist regularly every six months, as is customary for a survivor who has finished treatment. Then, much to my surprise, not long before my first post-five-year annual appointment, I received a form letter from a nurse at Fox Chase. She informed me that I would no longer be seeing the doctor, and that my appointments would be with her from then on. And that was my last contact with Fox Chase, other than having the center transfer my records to Penn.
I recently had my second visit with my new, young, smart, spunky, talented doctor at the Rena Rowen Breast Center at Penn. And the best part was that she knew my name! I mean, she knew who I was without looking at my records.
She didn't ask me when my last mammogram was, because she actually remembered that I had bilateral mastectomies. She asked me about my husband and referred to the fact that he is a rabbi. And she told me that, within three weeks of my transfer to her, three other patients were referred to her for the same reason.
Yes, we are survivors, but for every ache and pain that another person would forget about after taking a Tylenol, we think we have cancer. During my annual visits, when the oncologist asks me if I've had any health issues since we last met, my joking reply is, "Yes, I've had elbow cancer and neck cancer, but I'm fine now."
When you are in the midst of breast cancer treatment, your doctors and nurses become a part of your life. The breast surgeon and plastic surgeon become friends you look forward to seeing, even if you have to sit in their well-decorated waiting rooms for more than an hour.
And if you go through chemotherapy, as I did, the oncologist and the oncology nurses are people you see several times a month, who comfort you when you think you just can't do it anymore, and who laugh with you when you recount the story of how, halfway through your conversation with the UPS guy, you realized you forgot to put something on your bald head before you answered the door.
They know about your frightened children, your crazy in-laws, and the friend who brought you dinner. I didn't realize how much I missed that until I walked out of my appointment with my new doctor that day. I guess I'd been worn down.
Seven years ago, when I had five small children, I gave it my all. I found the best doctors, and I went through a 14-hour surgery and six months of chemotherapy. I learned to be an advocate for myself in every aspect of my treatment, always rising to the challenge.
Over the past few years, though, I'd let my guard down. I'd settled for being just another medical record.
But those days are over. Today I want to say "thank you" to my new doctor for saying my name - not "Mrs. Stein," not "Melissa," but the same name that I introduced myself with when I walked into her office for the first time: Missy.
Monday, September 21, 2009
99% Great News
I had a series of tests and visits at my cancer center today. It began with a blood draw at 6:30 AM, a chest CT with iodine contrast at 8:00 AM, and ended with an oncology clinic visit at 10:00 AM. I was done at 10:30 AM. The phlebotomist left me with a nice little gift… a black blood mark the size of a half dollar on the inside of arm where it bends at the elbow. It may take months for that to disappear. My chest CT was completely clear. Yahoo. My doctor saw no areas of concern during my physical exam. He looks for lumps and bumps, discoloration, tissue tone, etc. That makes it 23 months with No Evidence of Disease (NED). All of this is great news. I’m not sure who enjoys this more, my doctor or me. Needless to say, we’re both very pleased.
The other 1%. We talked about my continued use of the Tarceva. It’s a daily chemo pill and I’ve been on the maximum dosage of 150 mg for 21 months. Prior to the 23 months with no evidence of disease, I had my original cancer diagnosis and 3 recurrences in a 2 year time frame. He believes what I suspected he believed. The Tarceva is keeping my cancer from recurring. The drug side effects have been tolerable. As such, I will continue this treatment. The scary part here is, when will this drug stop being effective? No one knows. It could be days / weeks or it could be years. I’m so much better off than others, but this 1% is raining on my parade.
Take care everyone.
The other 1%. We talked about my continued use of the Tarceva. It’s a daily chemo pill and I’ve been on the maximum dosage of 150 mg for 21 months. Prior to the 23 months with no evidence of disease, I had my original cancer diagnosis and 3 recurrences in a 2 year time frame. He believes what I suspected he believed. The Tarceva is keeping my cancer from recurring. The drug side effects have been tolerable. As such, I will continue this treatment. The scary part here is, when will this drug stop being effective? No one knows. It could be days / weeks or it could be years. I’m so much better off than others, but this 1% is raining on my parade.
Take care everyone.
Saturday, September 12, 2009
Upcoming Clinic Visit
I’m scheduled for my first 3 month check up on Monday September 21st. My doctor decided that a CT scan of my chest is warranted. This is based on a note I sent to him regarding what I suspect is a pulled muscle in my left side that has not healed in 2 months. I thought he might start with an x-ray and then, if needed, move to a CT scan. This produces a high degree of anxiety… somewhat out of proportion to the actual pain. Now, only a clean scan will put my anxiety at bay.
June and July were terrific months for me. I was feeling great and saw a lot of friends and family. August and so far into September have not been as kind. Small aches and pains get in the way of enjoyment.
Today is the 9th anniversary of my mom’s death. She died of lung cancer at age 72. This too weighs on my mind.
Take care everyone.
June and July were terrific months for me. I was feeling great and saw a lot of friends and family. August and so far into September have not been as kind. Small aches and pains get in the way of enjoyment.
Today is the 9th anniversary of my mom’s death. She died of lung cancer at age 72. This too weighs on my mind.
Take care everyone.
Friday, August 14, 2009
Modified Barium Swallow Test
Hi. I had my modified barium swallow test today. Given the phrase that a picture is worth a thousand words, a video must be worth a lot more. Here’s a 40 second clip of someone (not me) taking the test…
http://video.google.com/videoplay?docid=4375530805602416900
About 30 seconds into the clip you can see how the liquid being swallowed collects for a few seconds (just above the Adam’s apple), then a swallow, and then it goes down the esophagus. As a result of my radiation and surgeries, much of my tissue in the pharynx region (that’s between one’s mouth and esophagus) is fused and just doesn’t move properly. This causes some food and liquid to enter my airway (a.k.a. aspiration). There are techniques I have learned over the past 2+ years to minimize aspirating. This includes eating in a reclining position and holding my breath while swallowing. The therapist administering the test was surprised by how much reclining helped me reduce aspirating. She also felt I had mastered the breathing while swallowing technique. I was surprised to learn that even with all I do to minimize aspirating, I still do aspirate. I could see it live on the motion x-Ray. Although it wasn’t a lot, she feels I am at high risk for pneumonia. One of the best ways for me to avoid pneumonia is to stay active. I guess this is good advice for just about everyone regardless of the circumstance.
The esophageal dilatation that I wrote about in my last two posts will not do me any good. The problem is in my pharynx, not my esophagus, and can not be used to widen an area in my pharynx. I feel good about trying, but disappointed in the result. The therapist that performed this test is setting up an appointment where they will show me some new exercises for my throat that may help with swallowing. That will be in about a month during my next clinic visit to the cancer center.
Take care everyone.
http://video.google.com/videoplay?docid=4375530805602416900
About 30 seconds into the clip you can see how the liquid being swallowed collects for a few seconds (just above the Adam’s apple), then a swallow, and then it goes down the esophagus. As a result of my radiation and surgeries, much of my tissue in the pharynx region (that’s between one’s mouth and esophagus) is fused and just doesn’t move properly. This causes some food and liquid to enter my airway (a.k.a. aspiration). There are techniques I have learned over the past 2+ years to minimize aspirating. This includes eating in a reclining position and holding my breath while swallowing. The therapist administering the test was surprised by how much reclining helped me reduce aspirating. She also felt I had mastered the breathing while swallowing technique. I was surprised to learn that even with all I do to minimize aspirating, I still do aspirate. I could see it live on the motion x-Ray. Although it wasn’t a lot, she feels I am at high risk for pneumonia. One of the best ways for me to avoid pneumonia is to stay active. I guess this is good advice for just about everyone regardless of the circumstance.
The esophageal dilatation that I wrote about in my last two posts will not do me any good. The problem is in my pharynx, not my esophagus, and can not be used to widen an area in my pharynx. I feel good about trying, but disappointed in the result. The therapist that performed this test is setting up an appointment where they will show me some new exercises for my throat that may help with swallowing. That will be in about a month during my next clinic visit to the cancer center.
Take care everyone.
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