Reality changes.
Looking back at the 12/15/06 posting, I see that optimism rained, no, poured from a wide-open spigot. The reality in the catch basin was meager. The idea of a holiday trip to Texas was born of optimism, but faltered in a new reality.
The "don’t plan, do" model doesn’t work any more. Approaching the trip more reflectively, I now see a long preparatory "To Do" list dwarfing my measure of stamina available to apply to it.
Updated reality: "don’t do, plan." Grab inspiration once, think twice about what it will take to make it happen: energy expended, time consumed, other "To Do’s" postponed. My rosy holiday plans for travel were based on an outdated understanding of my current abilities.
Does this mean the joy of spontaneity will be wrung from my life? I don’t think so. Perhaps I will cultivate a keener awareness of the opportunity for spontaneity, a quick assessment of options, and a lightning fast opening to the pleasure at hand.
New reality, new perspective, meeting and learning to know another aspect of "me."
Written 12/22/2006.
Copyright 2006
Thursday, December 28, 2006
No Progress
The results of two additional diagnostic tests are in, and we are no closer to a firm diagnosis.
One exotic test screened for a gene mutation that would, along with other factors, support a diagnosis of medullary carcinoma of the thyroid. This proved negative.
On the other test, all indicators were within normal limits.
We are still in territory labeled "mixed results." Each round of tests eliminates one or another possibility for the primary site of the cancer. That one nugget of information will help shape a treatment plan. More tests are likely in Houston; none are scheduled for the interim.
In the meantime, we wait until our appointed time in Houston and quietly celebrate the holiday at home. The sun in shining here; we welcome the warmth of the season, the day and the moment and open our arms to share it with you in the spirit of the holiday season.
Written 12/22/2006
Copyright 2006
One exotic test screened for a gene mutation that would, along with other factors, support a diagnosis of medullary carcinoma of the thyroid. This proved negative.
On the other test, all indicators were within normal limits.
We are still in territory labeled "mixed results." Each round of tests eliminates one or another possibility for the primary site of the cancer. That one nugget of information will help shape a treatment plan. More tests are likely in Houston; none are scheduled for the interim.
In the meantime, we wait until our appointed time in Houston and quietly celebrate the holiday at home. The sun in shining here; we welcome the warmth of the season, the day and the moment and open our arms to share it with you in the spirit of the holiday season.
Written 12/22/2006
Copyright 2006
Friday, December 15, 2006
Progress
MD Anderson Cancer Center has reviewed all the diagnostic materials collected to date, has agreed to see me and to provide a second opinion.
The diagnostic label, for the meantime, is Carcinoma of Unknown Origin, Stage IV.
Treatment: Next week we will head west for a Texas holiday with family, and report to Houston on January 2nd for 5-7 business days of interviews and, most likely, further testing. The result should be a recommended treatment plan from the MD Anderson doctors.
Our preference is for a treatment that can be administered close to home. Not only is it more convenient and less costly, but, I suspect, is more effective in familiar surroundings with the support of family and friends nearby.
We have investigated and continue to evaluate complementary and alternative treatments for cancer. We believe an integrated approach makes fullest use of the body’s natural desire to nourish the life force while bringing to bear the latest technological and curative tools and methods available from medicine and science. Our final decision regarding treatment will take this into account.
Prognosis: Without a firm diagnosis, difficult to say. None of the likely outcomes are particularly sunny. The characteristic slow growth of carcinoid tumors (if that is confirmed) gives us a bit of time to formulate a plan and treat. On the other hand, the spread of tumors is extensive and continues while I remain untreated. Now we are moving again!
Every day is a gift. Every morning I unwrap that gift and give thanks.
More news as available. Happy holidays everyone!
Copyright 2006
The diagnostic label, for the meantime, is Carcinoma of Unknown Origin, Stage IV.
Treatment: Next week we will head west for a Texas holiday with family, and report to Houston on January 2nd for 5-7 business days of interviews and, most likely, further testing. The result should be a recommended treatment plan from the MD Anderson doctors.
Our preference is for a treatment that can be administered close to home. Not only is it more convenient and less costly, but, I suspect, is more effective in familiar surroundings with the support of family and friends nearby.
We have investigated and continue to evaluate complementary and alternative treatments for cancer. We believe an integrated approach makes fullest use of the body’s natural desire to nourish the life force while bringing to bear the latest technological and curative tools and methods available from medicine and science. Our final decision regarding treatment will take this into account.
Prognosis: Without a firm diagnosis, difficult to say. None of the likely outcomes are particularly sunny. The characteristic slow growth of carcinoid tumors (if that is confirmed) gives us a bit of time to formulate a plan and treat. On the other hand, the spread of tumors is extensive and continues while I remain untreated. Now we are moving again!
Every day is a gift. Every morning I unwrap that gift and give thanks.
More news as available. Happy holidays everyone!
Copyright 2006
Tuesday, December 12, 2006
Oncologist Dies in Plane Crash
Oncologist Christopher Desch, MD was killed Sunday December 10, 2006 when the single-engine airplane he was piloting lost power and crashed into trees near the Charlottesville-Albemarle airport, Virginia. He was flying a 30-year old Piper Lance owned by the Wingnuts Flying Club of which he was a three year member. He held a pilot’s license with instrument rating.
Dr Desch was highly regarded in the cancer care community both locally and nationally. "He was an absolutely wonderful physician … very compassionate and skilled … very concerned about the effective delivery of cancer care," said Dr Gordon D Ginder, director of Massey Cancer Center. (Richmond Times Dispatch).
His leadership and guidance gave heart to the Rappahannock General Hospital Cancer Clinic. His national reputation brought notice to our petition to MD Anderson to review the diagnosis and consider my case for treatment there. In the short time we worked with him we came to appreciate his attentive, caring manner and the respect with which he listened to what we had to say.
We mourn his loss for the sake of all whose lives he touched.
Copyright 2006
Dr Desch was highly regarded in the cancer care community both locally and nationally. "He was an absolutely wonderful physician … very compassionate and skilled … very concerned about the effective delivery of cancer care," said Dr Gordon D Ginder, director of Massey Cancer Center. (Richmond Times Dispatch).
His leadership and guidance gave heart to the Rappahannock General Hospital Cancer Clinic. His national reputation brought notice to our petition to MD Anderson to review the diagnosis and consider my case for treatment there. In the short time we worked with him we came to appreciate his attentive, caring manner and the respect with which he listened to what we had to say.
We mourn his loss for the sake of all whose lives he touched.
Copyright 2006
Monday, December 4, 2006
"An Interesting Case"
No definitive answers yet.
Our oncologist reviewed the results of the tests done last week. The octreotide scan came up normal all around. The urine analysis was negative for the tested component. The blood work came up elevated for colon/gastrointestinal and thyroid cancer; normal all other. The thyroid ultrasound shows cystic areas. Put together, an inconclusive picture.
At this point, we will do additional bloodwork to investigate two possibilities: 1) Medullary carcinoma of the thyroid (a slow growing tumor), and 2) Neuro endocrine tumor of the pancreas.
The bloodwork results will determine whether to do a biopsy of my thyroid. Our Oncologist will submit these and all prior findings to the MD Anderson specialists who have the techniques, technology and experience to sort through these mixed results and call for further diagnostic work-ups and/or determine a final diagnosis as a foundation for a treatment plan. He is pressing for an early review, not only to get an answer for us as soon as possible, but also because MD Anderson is beginning a research program in January for a new medicine (serafamib) that could apply to my situation if in fact the thyroid diagnosis is confirmed. At present there is no standard treatment plan for this type of thyroid cancer. The good news is that this is a slow growing type of cancer.
More blood drawn today for the follow up tests. We await word about progress in being seen at MD Anderson. Our oncologist feels this is the best place for an accurate diagnosis and quick entrée to a treatment program as they see people from all over the world with weird forms of cancer and have the latest information and programs available to deal with such rare situations. There is a good chance that at least some of the treatment can be arranged locally so that the stress of travelling and being away from home can be reduced.
The plot thickens. I've always loved a good mystery ... now I AM one! Next chapter as soon as we have information or results.
Thank you all for your positive energy, your prayers and affirmations.
Copyright 2006
Our oncologist reviewed the results of the tests done last week. The octreotide scan came up normal all around. The urine analysis was negative for the tested component. The blood work came up elevated for colon/gastrointestinal and thyroid cancer; normal all other. The thyroid ultrasound shows cystic areas. Put together, an inconclusive picture.
At this point, we will do additional bloodwork to investigate two possibilities: 1) Medullary carcinoma of the thyroid (a slow growing tumor), and 2) Neuro endocrine tumor of the pancreas.
The bloodwork results will determine whether to do a biopsy of my thyroid. Our Oncologist will submit these and all prior findings to the MD Anderson specialists who have the techniques, technology and experience to sort through these mixed results and call for further diagnostic work-ups and/or determine a final diagnosis as a foundation for a treatment plan. He is pressing for an early review, not only to get an answer for us as soon as possible, but also because MD Anderson is beginning a research program in January for a new medicine (serafamib) that could apply to my situation if in fact the thyroid diagnosis is confirmed. At present there is no standard treatment plan for this type of thyroid cancer. The good news is that this is a slow growing type of cancer.
More blood drawn today for the follow up tests. We await word about progress in being seen at MD Anderson. Our oncologist feels this is the best place for an accurate diagnosis and quick entrée to a treatment program as they see people from all over the world with weird forms of cancer and have the latest information and programs available to deal with such rare situations. There is a good chance that at least some of the treatment can be arranged locally so that the stress of travelling and being away from home can be reduced.
The plot thickens. I've always loved a good mystery ... now I AM one! Next chapter as soon as we have information or results.
Thank you all for your positive energy, your prayers and affirmations.
Copyright 2006
Monday, November 20, 2006
Revised Diagnosis
Revised Diagnosis
Carcinoid Neuro endocrine tumor
Meaning hormone-related symptoms are prominent
Usually slower growth than regular cancers
Unknown when growth started, therefore difficult to determine level of Stage 4 status
Numerous tumors throughout liver
Still unable to identify primary site; definitely NOT pancreas, although a tumor is there
Further Diagnosis and refining the level of Stage 4 based upon:
Blood tests
Ultrasound of neck (check status of thyroid)
Urine analysis
Octreotide scan (locates carcinoid tumors)
Prognosis: not curable
Focus of Treatment:
Sustain liver function as long as possible by eliminating tumors there
Treatments suggested:
Chemo embolization of tumors in my liver OR
Radiological liver ablation
Other treatments may be suggested by results of the current series of tests
Surgery NOT indicated because distribution throughout liver is too widespread
Medical centers that focus on this type of cancer:
MD Anderson (Houston)
Sloan Kettering (NYC)
Duke (Durham, NC)
More info:
www.carcinoid.org
Next appointment: December 4
Copyright 2006
Sunday, November 19, 2006
Diagnosis
Latest from my family doctor from the liver biopsy pathology report:
Metastatic Carcinoma with neuro endocrine features
(this means pancreatic cancer)
CT scan of 11/17 revealed a 1" tumor in the pancreas, likely spread to liver from this primary source. Aggression can be inferred from results of two Liver Function Tests (LFT) measuring enzyme levels, one taken in May (normal levels) the second taken in October (slightly elevated levels). This together with the apparent size of the tumors in both organs indicates a "somewhat aggressive" growth/spread pattern given the time frame. This is MY OWN interpretation, and synchronizes with my intuitive "body knowledge" and awareness of the development of the illness.
More Monday (11/20) after we see the oncologist: a tighter diagnosis, a preliminary treatment plan.
Here are some links that describe pancreatic cancer and some treatment options.
http://www.mayoclinic.com/health/pancreatic-cancer/DS00357/DSECTION=1
http://pathology2.jhu.edu/pancreas/index.htm
http://nccam.nih.gov/
Love to all and my boundless gratitude for your support; the knowledge of your love sustains me.
Copyright 2006
Metastatic Carcinoma with neuro endocrine features
(this means pancreatic cancer)
CT scan of 11/17 revealed a 1" tumor in the pancreas, likely spread to liver from this primary source. Aggression can be inferred from results of two Liver Function Tests (LFT) measuring enzyme levels, one taken in May (normal levels) the second taken in October (slightly elevated levels). This together with the apparent size of the tumors in both organs indicates a "somewhat aggressive" growth/spread pattern given the time frame. This is MY OWN interpretation, and synchronizes with my intuitive "body knowledge" and awareness of the development of the illness.
More Monday (11/20) after we see the oncologist: a tighter diagnosis, a preliminary treatment plan.
Here are some links that describe pancreatic cancer and some treatment options.
http://www.mayoclinic.com/health/pancreatic-cancer/DS00357/DSECTION=1
http://pathology2.jhu.edu/pancreas/index.htm
http://nccam.nih.gov/
Love to all and my boundless gratitude for your support; the knowledge of your love sustains me.
Copyright 2006
HELLO from Michael
Very simple: We are closer to each other now than we have ever been.... and as you all know that is pretty close! Linda is wonderful, I love her more each day, and I am proud to be at her side - now and forever.
Michael
Copyright 2006
Michael
Copyright 2006
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