Sunday, October 12, 2008
The Empty Mirror
God, it is official, I looked in the mirror and the person looking back was not me - there was just a vapor trail of particles left behind as my soul departed. I blinked again and there was a face in the mirror but it was not my face. In the brief period since the diagnosis, my face has become swollen and puffy and my nose is an entirely different shape - Lyn verified this last night when we went to the movies. Yes, after all these years, I have finally achieved the Hayley Mills look. My formerly very straight nose is now a cute, turned up version of a nose. Great on Pollyanna, on me, not so much. And there are so many black heads on the skin of my nose - I wash my face every day but I cannot scrub there the way I used to, it hurts too much. I don't look like me. And you know what, I guess I actually had grown accustomed to my own face after all these years. I only hope the treatments will make me look like myself again.
Thursday, October 9, 2008
ME Again - Treatment Options
My favorite subject these days!
Yesterday, I went in to San Francisco to see Dr.Tom Engel and I felt the conversation and the outcome were a bit overwhelming. OK, a lot overwhelming. He is very adept at not answering direct questions - so much so that I was tempted to ask him if he is running for president (but I did not do that, I was good). Dr. Engel felt very strongly that I have a good chance to beat this cancer - with radical surgery and/or radiation, which is what he told me on the phone. I finally nailed him down and he recommends trying radiation first. He did not think a visit to an oncologist would be helpful for this type of cancer and told me FLAT OUT that oncology is only for chemotherapy (Not TRUE). I told him I was considering MD Anderson Hospital in Houston and he said that was a good choice. He ordered an MRI (next Thursday) and encouraged me to keep my appointment with the radiation oncologist today. Dr. Engel did not feel the cancer had spread to my lymph nodes at all, based on viewing the actual PET scan in color he said he though the areas which lit up in my neck were areas of inflammation.
So today, I went back in to SF and spent 3 hours at Cal Pacific in Dr. Abendorff's office (spelling). I liked the doctor a lot and I liked the practice. This doctor concurred that the cancer is medium to advanced stage but he feels that it can be handled successfully with radiation and possibly, radiation and chemotherapy (with surgery as a backup plan) so he gave the name of an oncologist - Dr. Alan Kramer, whom i will see next week. Dr. Abendorff also said MD Anderson was a good choice and I really should go there for a consult, no matter what. I will do that and also maybe go to Sloan Kettering in New York. Working on getting appointments set up for Houston for the week of October 20. No matter where I go, I should start treatment by November 1. Dr. Abendorff DID feel there is involvement in ONE lymph node and that we can get it with radiation.
Some good news from Dr. Abendorff - I probably will not lose my hair (not that I have much left) and it is safe to get back into the dye pot (YAY!). Also, long term side effects of radiation are not completely awful - worst is a high likelihood of developing cataracts due to the nearness of my eyes to the radiated sites. During treatment, it will be as if I have a bad sunburn inside and outside the area being treated, but he did say that given the amount of irritation currently in my nose, probably not much different than the pain I am now feeling inside. Outside will be a little tough but at least I will have my face, even if I do develop dry skin (God, and I have worked all of my life to maintain my skin).
Other good news - Dr. Goldfarb called this morning with Koukla's blood test results from yesterday and she is doing WONDERFULLY WELL (as I knew).
Yesterday, I went in to San Francisco to see Dr.Tom Engel and I felt the conversation and the outcome were a bit overwhelming. OK, a lot overwhelming. He is very adept at not answering direct questions - so much so that I was tempted to ask him if he is running for president (but I did not do that, I was good). Dr. Engel felt very strongly that I have a good chance to beat this cancer - with radical surgery and/or radiation, which is what he told me on the phone. I finally nailed him down and he recommends trying radiation first. He did not think a visit to an oncologist would be helpful for this type of cancer and told me FLAT OUT that oncology is only for chemotherapy (Not TRUE). I told him I was considering MD Anderson Hospital in Houston and he said that was a good choice. He ordered an MRI (next Thursday) and encouraged me to keep my appointment with the radiation oncologist today. Dr. Engel did not feel the cancer had spread to my lymph nodes at all, based on viewing the actual PET scan in color he said he though the areas which lit up in my neck were areas of inflammation.
So today, I went back in to SF and spent 3 hours at Cal Pacific in Dr. Abendorff's office (spelling). I liked the doctor a lot and I liked the practice. This doctor concurred that the cancer is medium to advanced stage but he feels that it can be handled successfully with radiation and possibly, radiation and chemotherapy (with surgery as a backup plan) so he gave the name of an oncologist - Dr. Alan Kramer, whom i will see next week. Dr. Abendorff also said MD Anderson was a good choice and I really should go there for a consult, no matter what. I will do that and also maybe go to Sloan Kettering in New York. Working on getting appointments set up for Houston for the week of October 20. No matter where I go, I should start treatment by November 1. Dr. Abendorff DID feel there is involvement in ONE lymph node and that we can get it with radiation.
Some good news from Dr. Abendorff - I probably will not lose my hair (not that I have much left) and it is safe to get back into the dye pot (YAY!). Also, long term side effects of radiation are not completely awful - worst is a high likelihood of developing cataracts due to the nearness of my eyes to the radiated sites. During treatment, it will be as if I have a bad sunburn inside and outside the area being treated, but he did say that given the amount of irritation currently in my nose, probably not much different than the pain I am now feeling inside. Outside will be a little tough but at least I will have my face, even if I do develop dry skin (God, and I have worked all of my life to maintain my skin).
Other good news - Dr. Goldfarb called this morning with Koukla's blood test results from yesterday and she is doing WONDERFULLY WELL (as I knew).
Thursday, October 2, 2008
The Results Are In
When I arrived at the medical office for the scan, the receptionist asked me a series of questions. Have you had chemotherapy? Have you had radiation? Things like that. And it hit me: I am now a cancer patient. All staff were very nice and compassionate and took the time to explain to me each step along the way as well as the why behind each step. I really appreciate that!
And the results of the scan came back: there is major involvement in my nose as well as some evidence that my lymph nodes of the right side of my neck have been affected. There is no other sign of any activity at this time (thank GOD). My doctor was most concerned with the lymph nodes and this will probably mean I will have them removed (I am not attached). But the scary thing is the amount of involvement with my nose - I could be facing extensive surgery that may mean removing my nose and using a prosthetic. How many different ways can I say NO WAY to that? Of course, if it comes down to my life, I will do whatever I have to do to stay alive. But I am scared to death.
I have consults set up for next week with my doctor and with a radiation oncologist in SF. After that, I will schedule consults with the doctors at MD Anderson in Houston, Texas, which is where Dr. Anderson (my former primary doc who is now retired but looking out for me, I love you, Jeff) thinks I will have the best treatment. Since Dr. Anderson is himself a survivor of this cancer, his opinion on this means more than usual. My sister actually reminded me, this morning, that cancer due to building materials and chemical exposure is a concern I have had since 1987 when Dr. Anderson first treated me for Multiple Chemical Sensitivity.
And the results of the scan came back: there is major involvement in my nose as well as some evidence that my lymph nodes of the right side of my neck have been affected. There is no other sign of any activity at this time (thank GOD). My doctor was most concerned with the lymph nodes and this will probably mean I will have them removed (I am not attached). But the scary thing is the amount of involvement with my nose - I could be facing extensive surgery that may mean removing my nose and using a prosthetic. How many different ways can I say NO WAY to that? Of course, if it comes down to my life, I will do whatever I have to do to stay alive. But I am scared to death.
I have consults set up for next week with my doctor and with a radiation oncologist in SF. After that, I will schedule consults with the doctors at MD Anderson in Houston, Texas, which is where Dr. Anderson (my former primary doc who is now retired but looking out for me, I love you, Jeff) thinks I will have the best treatment. Since Dr. Anderson is himself a survivor of this cancer, his opinion on this means more than usual. My sister actually reminded me, this morning, that cancer due to building materials and chemical exposure is a concern I have had since 1987 when Dr. Anderson first treated me for Multiple Chemical Sensitivity.
Monday, September 29, 2008
Welcome
Hi all!
While this blog is new, I am not new to blogging. But after reviewing my latest blog entries on my main blog page, it has become clear to me that I would be better off confining my posts about my illness to one specific site in the hope that other cancer patients will find my observations and experiences useful.
Basically, I have been having issues with my health for several years. In spite of numerous visits to a multitude of doctors, it was only last week that I was diagnosed with squamous cell carcinoma of the nasal septum. This is nobody's fault - nothing showed up until now. Here is a brief history:
In May of 2005, I noticed a little blood in my "morning sputum" - if you have allergies, you know that it is not uncommon to spit up mucous first thing in the morning. I went to the doctor where I was tested for problems with my lungs - not a stretch since I have had asthma all of my life. Nothing showed but as a precaution, I was given antibiotics and told to call back if the problem didn't clear up. Well, it didn't clear up but the problem was so small and intermittent that I didn't call back. A year later, it occurred to me that perhaps this blood was in my post nasal drip so I visited an otolaryngologist (ear, nose and throat doctor) who said he saw a small lesion high in my nose but "I don't think it's cancer." He cauterized the area and prescribed Flonase. The problem persisted so I went back to the doctor as a follow up. He said there was nothing new and to give the medication time to work. Yadayadayada.
A year later, I went to see a different ENT who told me that she saw nothing there. So I let it go. Meanwhile, the occasional bloody sputum had turned into occasional nosebleeds. I consulted a 3rd ENT (in the same practice as the 2nd) who told me there was definitely something in my nose but again, he did not think it was cancer. He did suggest I not use Flonase because it is too drying for the nasal passages, so he prescribed an ointment call Muciprocin (antibiotic) and told me not to use NSAIDs or aspirin, only Tylenol, if I had pain, or to call for a prescription. The nosebleeds increased and became so bad that I wondered if I was single-handedly supporting the Kleenex company. I returned to the 3rd ENT and he said the problem was worse and suggested a biopsy. That was earlier this year - April, I think. I was to call and set up an appointment to do this.
Before I could schedule the biopsy, I became ill with what turned out to be pancreatitis. I was hospitalized twice for that - each stay a lovely week at Marin General Hospital - and following the 2nd stay, my gallbladder was removed. It may be noted here that only once or twice during my hospital stays did I experience nosebleeds and as they go, they were pretty minor.
When I was sufficiently recovered from the surgery and the illness, I scheduled a biopsy. The news came back in one working day: cancer. That was one week ago today. A PET scan was ordered and performed and I am now awaiting the results of that test to see if the disease is contained and where exactly in my nose it is located.
While this blog is new, I am not new to blogging. But after reviewing my latest blog entries on my main blog page, it has become clear to me that I would be better off confining my posts about my illness to one specific site in the hope that other cancer patients will find my observations and experiences useful.
Basically, I have been having issues with my health for several years. In spite of numerous visits to a multitude of doctors, it was only last week that I was diagnosed with squamous cell carcinoma of the nasal septum. This is nobody's fault - nothing showed up until now. Here is a brief history:
In May of 2005, I noticed a little blood in my "morning sputum" - if you have allergies, you know that it is not uncommon to spit up mucous first thing in the morning. I went to the doctor where I was tested for problems with my lungs - not a stretch since I have had asthma all of my life. Nothing showed but as a precaution, I was given antibiotics and told to call back if the problem didn't clear up. Well, it didn't clear up but the problem was so small and intermittent that I didn't call back. A year later, it occurred to me that perhaps this blood was in my post nasal drip so I visited an otolaryngologist (ear, nose and throat doctor) who said he saw a small lesion high in my nose but "I don't think it's cancer." He cauterized the area and prescribed Flonase. The problem persisted so I went back to the doctor as a follow up. He said there was nothing new and to give the medication time to work. Yadayadayada.
A year later, I went to see a different ENT who told me that she saw nothing there. So I let it go. Meanwhile, the occasional bloody sputum had turned into occasional nosebleeds. I consulted a 3rd ENT (in the same practice as the 2nd) who told me there was definitely something in my nose but again, he did not think it was cancer. He did suggest I not use Flonase because it is too drying for the nasal passages, so he prescribed an ointment call Muciprocin (antibiotic) and told me not to use NSAIDs or aspirin, only Tylenol, if I had pain, or to call for a prescription. The nosebleeds increased and became so bad that I wondered if I was single-handedly supporting the Kleenex company. I returned to the 3rd ENT and he said the problem was worse and suggested a biopsy. That was earlier this year - April, I think. I was to call and set up an appointment to do this.
Before I could schedule the biopsy, I became ill with what turned out to be pancreatitis. I was hospitalized twice for that - each stay a lovely week at Marin General Hospital - and following the 2nd stay, my gallbladder was removed. It may be noted here that only once or twice during my hospital stays did I experience nosebleeds and as they go, they were pretty minor.
When I was sufficiently recovered from the surgery and the illness, I scheduled a biopsy. The news came back in one working day: cancer. That was one week ago today. A PET scan was ordered and performed and I am now awaiting the results of that test to see if the disease is contained and where exactly in my nose it is located.
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