Come April and I’m still here! That would have seemed a miracle last Fall with the escalating lab results and the tough news from the doctors. Now the latest results:
Calcitonin marks cancer activity in the thyroid specifically. Its high point for testing to date was recorded on 2-27-07; the next comparable test on 4-05-07 (results were extremely delayed) showed a decline of 9%, the first decline recorded for this test since the diagnosis.
CarcineoEmbryonic Antigen (CEA). This is a non-specific tumor marker indicating my body’s response to level of cancer cell activity. Numbers rise, more cancer cells are being created; numbers decline, fewer cancer cells are being created. Comparing the 2-27-07 test with the 4-05-07 test shows a decline of 20%, again the first decline.
These numbers together with the CT scan comparisons and most recent bloodwork results showing liver function back to normal range are very encouraging. We are guarding against complacency and holding our focus on improving or at least maintaining the present situation.
Thanks beyond measure to Michael for unswerving diligence and skill surfing and analyzing Internet information and resources and spearheading the effort necessary to get us to this point. Many of you have sent caring e-mails and loving messages of encouragement. It has been difficult to respond in a timely manner; you WILL hear from me personally as soon as I am able. With gratitude and blessings for the support, encouragement and positive energy, prayers, thoughts, and confidence from all of you.
Copyright 2007
Thursday, April 26, 2007
Wednesday, April 4, 2007
Treatment Review
We met with our oncologist today to review treatment status following a month of alternative/complementary treatment at Oasis of Hope Hospital in Tijuana, Mexico which followed six weeks of chemotherapy here in Virginia.
He confirmed the radiologist’s report of no change in tumor size between the 3 January and 23 March CT scans. I saw the images myself. In a review conducted last Friday (March 30) of the 20 February CT, the radiologist now reports no change from 3 January. A stable condition has been achieved. Whether this occurred because of the initial course of chemotherapy (Jan 18 – Feb 20) or from the alternative/complementary treatment (March 1 – March 28), each conducted independently without other concurrent treatment, it is now difficult to determine.
Other factors taken into account in choosing the next treatment step:
My reports of how I feel: greater stamina, greater strength (less fatigue), improved digestion, improved pain management (no longer require narcotic pain medication), clearer thinking.
Physical examination: liver is softer when palpated and size is unchanged.
Of concern is that two measures of cancer activity related to the thyroid continue to increase. We are taking an UltraSound of my thyroid to see if it can be biopsied and identified or eliminated as the primary site. This may give us a different selection of treatment options in the future.
For the meantime, we will carry on, with our oncologist’s blessing, what we have been doing: administering vaccines made from my own blood, the at-home continuation of the alternative treatment begun in Mexico. This technique is under study by US governmental health agencies and is thoroughly familiar to our oncologist.
We are learning to live with uncertainty and ambiguity. But doesn’t that define life?
Copyright 2007
He confirmed the radiologist’s report of no change in tumor size between the 3 January and 23 March CT scans. I saw the images myself. In a review conducted last Friday (March 30) of the 20 February CT, the radiologist now reports no change from 3 January. A stable condition has been achieved. Whether this occurred because of the initial course of chemotherapy (Jan 18 – Feb 20) or from the alternative/complementary treatment (March 1 – March 28), each conducted independently without other concurrent treatment, it is now difficult to determine.
Other factors taken into account in choosing the next treatment step:
My reports of how I feel: greater stamina, greater strength (less fatigue), improved digestion, improved pain management (no longer require narcotic pain medication), clearer thinking.
Physical examination: liver is softer when palpated and size is unchanged.
Of concern is that two measures of cancer activity related to the thyroid continue to increase. We are taking an UltraSound of my thyroid to see if it can be biopsied and identified or eliminated as the primary site. This may give us a different selection of treatment options in the future.
For the meantime, we will carry on, with our oncologist’s blessing, what we have been doing: administering vaccines made from my own blood, the at-home continuation of the alternative treatment begun in Mexico. This technique is under study by US governmental health agencies and is thoroughly familiar to our oncologist.
We are learning to live with uncertainty and ambiguity. But doesn’t that define life?
Copyright 2007
Tuesday, April 3, 2007
Treatment Results
The radiologist’s report of the 23 March 2007 CT scan from Oasis of Hope Hospital has been translated from Spanish to English now. The results were compared with the CT scan taken 3 January 2007 and show no change in the liver tumor size. This is an improvement because the midpoint CT scan of 20 February 2007 showed a growth in tumor size as noted in a previous blog posting.
The most recent blood tests of 22 March 2007 also show liver enzyme levels have returned to normal range for the first time since last Fall. These levels were the very first indication that something was wrong and led to further testing revealing the existence of cancer.
We meet with the oncologist this week. He will review the results from Oasis of Hope Hospital and we will discuss with him what he recommends as a next step in treatment.
Copyright 2007
The most recent blood tests of 22 March 2007 also show liver enzyme levels have returned to normal range for the first time since last Fall. These levels were the very first indication that something was wrong and led to further testing revealing the existence of cancer.
This CT confirmed again no tumors on my pancreas.
We meet with the oncologist this week. He will review the results from Oasis of Hope Hospital and we will discuss with him what he recommends as a next step in treatment.
More later.
Copyright 2007
Friday, March 23, 2007
Time Management
Tijuana’s sunshine and balmy breezes aside, the Issels doctors set a tough regimen. Here’s how my hours are filled.
DAILY:
(Duration for each task includes preparation and clean-up time)
½ hr - vital signs 2x/day plus weight every morning
¾ hr consume nine juice doses spaced throughout the day (some require mixing with other compounds)
1 ¼ hr two coffee enemas
½ hr one juice enema
2 ¼ hr three meals in dining room; info exchange with other patients and companions, socialization, check daily schedule, eat
¾ hr walk or other exercise/physical therapy
½ hr IV Vitamin B17
3 hr IV Vitamin C
1 ½ hr castor oil poultice with heat for liver
1 hr clay poultice for liver
½ hr schmoozing with the nurses
½ hr doctor exam/consult
¾ hr admin, email, Internet, appointments, phone calls
1 ½ hr personal toilette, body maintenance
½ hr misc medical: blood draw, imaging
1 hr lecture (breathing exercises, relaxation techniques, home follow-up)
Oh, yes, and sleep, blessed sleep whenever possible (I am awakened at midnight for one scheduled medication.)
OTHER SCHEDULED:
1 hr intermittent treatments 2x/week, (photoluminescence, vaccines, etc) 1 ¼ hr colonic (weekly)
OTHER:
1 hr with psychologist, stress management (weekly)
2 hr evening video and popcorn (weekly)
Visualization
Meditation
A few of these can be multi-tasked, but require change of clothing because they are messy. This is just what occupies MY time; Michael takes care of everything else (and there is plenty of that).
FROM MICHAEL:
I haven’t added up all those time segments- maybe Linda has more than 24 hours in each of her days… something I have long suspected! She is a meticulous record keeper- as a look at her jump log will show. Anyway, Linda is just fine, in high spirits and completely engaged with life on its own terms with no preconditions- a great attitude. We have been here together in this room for nearly a month now- and it has been a good and constructive time for us both. We are closer now than ever before.
DAILY:
(Duration for each task includes preparation and clean-up time)
½ hr - vital signs 2x/day plus weight every morning
¾ hr consume nine juice doses spaced throughout the day (some require mixing with other compounds)
1 ¼ hr two coffee enemas
½ hr one juice enema
2 ¼ hr three meals in dining room; info exchange with other patients and companions, socialization, check daily schedule, eat
¾ hr walk or other exercise/physical therapy
½ hr IV Vitamin B17
3 hr IV Vitamin C
1 ½ hr castor oil poultice with heat for liver
1 hr clay poultice for liver
½ hr schmoozing with the nurses
½ hr doctor exam/consult
¾ hr admin, email, Internet, appointments, phone calls
1 ½ hr personal toilette, body maintenance
½ hr misc medical: blood draw, imaging
1 hr lecture (breathing exercises, relaxation techniques, home follow-up)
Oh, yes, and sleep, blessed sleep whenever possible (I am awakened at midnight for one scheduled medication.)
OTHER SCHEDULED:
1 hr intermittent treatments 2x/week, (photoluminescence, vaccines, etc) 1 ¼ hr colonic (weekly)
OTHER:
1 hr with psychologist, stress management (weekly)
2 hr evening video and popcorn (weekly)
Visualization
Meditation
A few of these can be multi-tasked, but require change of clothing because they are messy. This is just what occupies MY time; Michael takes care of everything else (and there is plenty of that).
FROM MICHAEL:
I haven’t added up all those time segments- maybe Linda has more than 24 hours in each of her days… something I have long suspected! She is a meticulous record keeper- as a look at her jump log will show. Anyway, Linda is just fine, in high spirits and completely engaged with life on its own terms with no preconditions- a great attitude. We have been here together in this room for nearly a month now- and it has been a good and constructive time for us both. We are closer now than ever before.
Sunday, March 11, 2007
Newer Directions
We will have the next blood test results of treatment effectiveness perhaps by March 15. These tests are only indicators. A CT scan is the surest way to see what is happening to the tumors in my liver. The next one is scheduled for March 27, a 5 week interval after the previous one, probably the earliest that will show definitive changes in tumor size.
When we left home, we expected to continue the revised chemotherapy treatment recommended by our oncologist scheduled to begin March 1 concurrently with the Issels program. We reconsidered. We wanted to hear what the medical team here at the Issels Clinic had to say after reviewing all that had already been done plus the results of their incoming examinations and testing.
We have done that now. The doctors in the Issels program were willing to accommodate a concurrent chemotherapy treatment, but recommended the Issels program on its own. Our best assessment of the situation is that we gave chemotherapy alone a try with negative results (while delaying start of the Issels program). Now we feel that to continue chemotherapy with a new set of medications concurrently with an entirely different alternative regimen would only present mixed results and the inability to attribute success or failure to one of three treatment plans.
So we are going with the Issels program alone. At the end of the 4 week program, the most we will have lost is a month of treatment by whatever method we choose to proceed with at that point. We had already lost 6 weeks to unsuccessful chemotherapy treatment. We feel we have nothing to lose by full participation in the Issels program and quite possibly a lot to gain.
Copyright 2007
When we left home, we expected to continue the revised chemotherapy treatment recommended by our oncologist scheduled to begin March 1 concurrently with the Issels program. We reconsidered. We wanted to hear what the medical team here at the Issels Clinic had to say after reviewing all that had already been done plus the results of their incoming examinations and testing.
We have done that now. The doctors in the Issels program were willing to accommodate a concurrent chemotherapy treatment, but recommended the Issels program on its own. Our best assessment of the situation is that we gave chemotherapy alone a try with negative results (while delaying start of the Issels program). Now we feel that to continue chemotherapy with a new set of medications concurrently with an entirely different alternative regimen would only present mixed results and the inability to attribute success or failure to one of three treatment plans.
So we are going with the Issels program alone. At the end of the 4 week program, the most we will have lost is a month of treatment by whatever method we choose to proceed with at that point. We had already lost 6 weeks to unsuccessful chemotherapy treatment. We feel we have nothing to lose by full participation in the Issels program and quite possibly a lot to gain.
Copyright 2007
Saturday, March 10, 2007
Getting There
Inspiration is a fine pole star. Schumann’s Fourth Symphony is mine, elevating the goal, tapping glorified energy to direct my path. What is lacking is the push to handle the daily grind on the way to exultation.
Molly (the unsinkable) Brown is my guiding light for simply plowing through whatever the daily grind throws at me. I first made her acquaintance when Burgess Meredith’s Broadway production came to fruition as I was blooming early on in my New York City phase. Three times I returned to soak up the relentlessly upbeat score, a natural affinity for a former cheerleader. Tammy Grimes, a petite powerhouse, epitomized Molly for me, infusing my imagination with an energy that has survived the decades. Her husky voice conveyed Molly’s grit and determination to make a better life for herself. In the Hollywood version Debbie Reynolds added sparkle to grit: a more polished, less earthy Molly.
Molly’s spirit is very much with me these days, the original cast recording filling my hospital room with energy and life. The very first number says it all: “I Ain’t Down Yet!”. Here she sings: “Sure I’m tuckered and I might give out, but I won’t give in. … There’ll come a time when nothin’ nor nobody wants me down like I wants me up. … Oh I hate that word down, but I love that word up. ‘Cause up means hope and that’s just what I got. Hope!”
Molly Brown’s energy accompanies me- along with all of you- on this journey … “WE AIN’T DOWN YET!!”
Copyright 2007
Molly (the unsinkable) Brown is my guiding light for simply plowing through whatever the daily grind throws at me. I first made her acquaintance when Burgess Meredith’s Broadway production came to fruition as I was blooming early on in my New York City phase. Three times I returned to soak up the relentlessly upbeat score, a natural affinity for a former cheerleader. Tammy Grimes, a petite powerhouse, epitomized Molly for me, infusing my imagination with an energy that has survived the decades. Her husky voice conveyed Molly’s grit and determination to make a better life for herself. In the Hollywood version Debbie Reynolds added sparkle to grit: a more polished, less earthy Molly.
Molly’s spirit is very much with me these days, the original cast recording filling my hospital room with energy and life. The very first number says it all: “I Ain’t Down Yet!”. Here she sings: “Sure I’m tuckered and I might give out, but I won’t give in. … There’ll come a time when nothin’ nor nobody wants me down like I wants me up. … Oh I hate that word down, but I love that word up. ‘Cause up means hope and that’s just what I got. Hope!”
Molly Brown’s energy accompanies me- along with all of you- on this journey … “WE AIN’T DOWN YET!!”
Copyright 2007
Tuesday, March 6, 2007
There
We were hit with a lot all at once; even as we walked in the door treatment began. We are confident we are getting the best possible care available anywhere in the world. The individual treatment protocols constitute a holistic plan tailored for each patient. Twice a week the doctors from all four clinics review the status of every patient in the hospital.
This hospital treats the whole person, a concept not well communicated on the Issels website. First hand experience is the best educator.
For physical well being, interventions are administered one to two times every hour and include juices, probiotics, supplements, vitamins & minerals, IV for delivery of ozone, vitamins, and later in the program some vaccines, IntraMuscular injections and the most delectable yoghurt I have ever tasted. An education component includes training for 6 months of home treatments following discharge, coping methods and sessions for caregivers only.
The schedule for therapies for the emotions includes relaxation guidance, laughter, breathing, art, music and more. The spiritual component of the body-mind-spirit triad is addressed with (optional attendance) morning and evening devotions as well as Sunday services. This is an institution functioning frankly as a non-denominational spiritually-based medical delivery system. I know we have faith-funded medical institutions in our culture, however I am not acquainted with how they operate in this context if at all.
Volunteers from an organization comprised of former cancer patients join us at lunch and dinner. They provide perspective on the focus and purpose of the hospital programs. Their presence provides a needed social context in a rotating hospital population.
After six days of treatment, it is too early to identify trends in the course of this illness, but the spirit of this place and the kindness of the staff has brought us a measure of optimism.
Copyright 2007
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