Catch Up
Thank you, thank you, each and all, for keeping in touch, for your cards, notes, emails, letters and calls, especially during what I call the “dark days.” These were the days between the recent holidays that were especially difficult for me: constant nausea overshadowed with the gloom of depression, probably due to the anniversary of D-Day (Diagnosis Day). As the days become colder and the hours of daily sunshine decreased, I spent more time mourning the fading days of a summertime filled with a light heart and optimism.
But now that I’ve had a couple of weeks with frequent strings of “good days”, and am managing the nausea a bit better, I find my spirits lightening. The beginning of a new year always has brought me renewed optimism. Now I’m celebrating just being here to write ANY date in 2008.
Recent highlights:
Laser-blasting a kidney stone on the day after Thanksgiving (out-patient surgery at Medical College of Virginia in Richmond).
A meeting with our oncologist on January 2. He confirmed the improvement shown by the imaging done in Charleston in early November. The cancer marker blood tests showed a decline in one marker of 57%, and the other marker of 44% (lower numbers are better). Furthermore, the physical exam of my liver, in the oncologist’s estimation showed “softening” of the liver area that had been hard and distended due to the size and mass of the tumor. We are all thrilled by the test results.
Dancing however briefly on New Year’s Eve (to Credence Clearwater).
Now we are back in Charleston for more CT imaging: chest & abdomen today and neck tomorrow, blood work on Monday and an appointment with the study’s principal oncologist to review imaging results and plan the next phase of the study participation. It is hard to imagine better results than those noted above, but we shall see. And I will pass along the news either way promptly.
A special thanks to Michael and his amazing endurance. I don’t know how he puts up with my recalcitrance and oftentimes difficult behavior. You can choose when and how you communicate with me. He’s stuck with me!
Copyright 2008
http://lindalater.blogspot.com
Posted January 31, 2008
Thursday, January 31, 2008
Monday, November 12, 2007
41%
The latest results are in!
The CT scans of Thursday and Friday last week show a decrease in area of the largest lesion in my liver from the first CT taken August 14 to the present taken 11/9 of 41%!
Previous = 6.3 x 7.5 cm
Present = 5.2 x 5 cm
The remainder of liver lesions have not shown change.
There are obstructions of the ureter that have to be dealt with; kidney stones are a family inheritance.
For the meantime I continue on the (presumed) Zactima at least until the next scans which are scheduled for February. By that time we will be happy to head south for a small break in the Virginia winter.
We both thank you all for your positive energy ... look at the results!
Copyright 2007
http://www.lindalater.blogspot.com
The CT scans of Thursday and Friday last week show a decrease in area of the largest lesion in my liver from the first CT taken August 14 to the present taken 11/9 of 41%!
Previous = 6.3 x 7.5 cm
Present = 5.2 x 5 cm
The remainder of liver lesions have not shown change.
There are obstructions of the ureter that have to be dealt with; kidney stones are a family inheritance.
For the meantime I continue on the (presumed) Zactima at least until the next scans which are scheduled for February. By that time we will be happy to head south for a small break in the Virginia winter.
We both thank you all for your positive energy ... look at the results!
Copyright 2007
http://www.lindalater.blogspot.com
Thursday, November 8, 2007
Nuggets
Occasional flashes of wisdom/humor/insight/wonder streak through my mind; I’ve taken to recording them quickly before they evaporate. They are not thoughts substantial enough to support further reflection. I offer them here, however, as evidence of the diverse nature of those phenomena that capture my attention during glimpses of the world as it exists for me now.
Surprising things I’ve unexpectedly come to know/learn:
How to quell a queasy feeling upon seeing a syringe.
Telling loved ones and strangers I have a chronic, often thought to be terminal, disease.
That the timetable to my final destination is typeset and on the printing press.
How to apply a really cold clay pack to a warm belly without flinching (haven’t mastered it yet, but I’m working on it).
How to dine as a vegetarian without soy products (become a soy detective).
A profound understanding of the concept of gratitude.
The rapture of a successful colonic.
Managing healthcare decisions utilizing sources with widely divergent philosophies of treatment.
Every arcane nuance of coffee enemas, from preparation to fulfillment.
Living with a catheter (even temporarily) for IV medications, implanted in my chest like an extra appendage requiring special maintenance.
Utter reliance on caregiver assistance to maintain medical treatments. Togetherness to the extreme.
I’ll not use 95% of the items stored in the kitchen “string drawer.”
Signs of Hope
Thinking about (even planning!) vacation travel excursions.
In January, planning the next Christmas holidays.
Several seasonal clothing exchanges: pack away winter; unpack summer. Repeat as necessary.
The New York Times coverage of the reality of living with cancer in the Sunday, July 29, 2007 issue. Excellent article, insightful especially of the swings between hope and despair through the course of the illness.
Disagreeable side effects indicative of medication efficacy.
Copyright 2007
Posted: October 19, 2007
http://www.lindalater.blogspot.com
Occasional flashes of wisdom/humor/insight/wonder streak through my mind; I’ve taken to recording them quickly before they evaporate. They are not thoughts substantial enough to support further reflection. I offer them here, however, as evidence of the diverse nature of those phenomena that capture my attention during glimpses of the world as it exists for me now.
Surprising things I’ve unexpectedly come to know/learn:
How to quell a queasy feeling upon seeing a syringe.
Telling loved ones and strangers I have a chronic, often thought to be terminal, disease.
That the timetable to my final destination is typeset and on the printing press.
How to apply a really cold clay pack to a warm belly without flinching (haven’t mastered it yet, but I’m working on it).
How to dine as a vegetarian without soy products (become a soy detective).
A profound understanding of the concept of gratitude.
The rapture of a successful colonic.
Managing healthcare decisions utilizing sources with widely divergent philosophies of treatment.
Every arcane nuance of coffee enemas, from preparation to fulfillment.
Living with a catheter (even temporarily) for IV medications, implanted in my chest like an extra appendage requiring special maintenance.
Utter reliance on caregiver assistance to maintain medical treatments. Togetherness to the extreme.
I’ll not use 95% of the items stored in the kitchen “string drawer.”
Signs of Hope
Thinking about (even planning!) vacation travel excursions.
In January, planning the next Christmas holidays.
Several seasonal clothing exchanges: pack away winter; unpack summer. Repeat as necessary.
The New York Times coverage of the reality of living with cancer in the Sunday, July 29, 2007 issue. Excellent article, insightful especially of the swings between hope and despair through the course of the illness.
Disagreeable side effects indicative of medication efficacy.
Copyright 2007
Posted: October 19, 2007
http://www.lindalater.blogspot.com
Thursday, November 1, 2007
Values Plummet!
Lab values have plummeted. Unlike the stock market, for us, the slide in values is good news!
Calcitonin (thyroid cancer marker) is down 24% on Oct 15 vs the prior labwork of September 26. The CEA (carcineoembryonic antigen) is down 37% for the same period. (See more complete description of these tests in blog of April 27, 2007.) Both markers are now four-digit numbers, below the 10,000 mark, whereas previously the Calcitonin was bouncing between 15,000 and 22,000, and the CEA hovering around 10,000. This is an exciting development!
As we wait to see future results, I’m sure you can understand why persons with cancer become numbers-obsessed.
More results as we return from Charleston in about 12 days.
Copyright 2007
http://lindalater.blogspot.com
Posted: November 1, 2007
Calcitonin (thyroid cancer marker) is down 24% on Oct 15 vs the prior labwork of September 26. The CEA (carcineoembryonic antigen) is down 37% for the same period. (See more complete description of these tests in blog of April 27, 2007.) Both markers are now four-digit numbers, below the 10,000 mark, whereas previously the Calcitonin was bouncing between 15,000 and 22,000, and the CEA hovering around 10,000. This is an exciting development!
As we wait to see future results, I’m sure you can understand why persons with cancer become numbers-obsessed.
More results as we return from Charleston in about 12 days.
Copyright 2007
http://lindalater.blogspot.com
Posted: November 1, 2007
Sunday, October 28, 2007
Chemo "Lite"
One informal, intuitive measurement of the effectiveness of chemotherapy for the treatment of cancer can be defined by the severity of the side effects of medication. Using one of the more common side effects, nausea as an example, one might say that the stronger the feeling of nausea, the more effective the medication is in treating the illness assuming, of course, that dosage of the medication has been accurately calculated.
As the Zactima clinical trial proceeds, we are reviewing the side effects I am experiencing assuming that the appearance of the known side effects indicates the presence of clinically effective Zactima, not the placebo. On a scale of 1 to 10, with 10 the most severe reaction, here is a list of known Zactima side effects plus a few I have added, ranked compared with past experience with the same side effect or a subjective evaluation of what severe might mean:
NAUSEA=4
FATIGUE (need for naps, motivation to "do," stamina, endurance)=3
DIARRHEA=7
RASH (red, patchy, itchy skin condition appearing following exposure to sunlight enduring for several weeks)=5
ANXIETY=3
DEPRESSION=2
EDEMA=3
SKIN SENSITIVITY=5
SIGNATURE (For me, a primary indicator of overall "health:" executed with flourish and verve demonstrating strength vs wavering, indecisive character formations with tremors evident demonstrating weakness)=2
Compared with previous courses of chemotherapy, the present Zactima trial feels relatively tolerable, thus "chemo lite."
We are thankful for the appearance of side effects that reinforce our intuition that we are receiving the real Zactima and we cheer: "Bring them on!"
Copyright 2007
As the Zactima clinical trial proceeds, we are reviewing the side effects I am experiencing assuming that the appearance of the known side effects indicates the presence of clinically effective Zactima, not the placebo. On a scale of 1 to 10, with 10 the most severe reaction, here is a list of known Zactima side effects plus a few I have added, ranked compared with past experience with the same side effect or a subjective evaluation of what severe might mean:
NAUSEA=4
FATIGUE (need for naps, motivation to "do," stamina, endurance)=3
DIARRHEA=7
RASH (red, patchy, itchy skin condition appearing following exposure to sunlight enduring for several weeks)=5
ANXIETY=3
DEPRESSION=2
EDEMA=3
SKIN SENSITIVITY=5
SIGNATURE (For me, a primary indicator of overall "health:" executed with flourish and verve demonstrating strength vs wavering, indecisive character formations with tremors evident demonstrating weakness)=2
Compared with previous courses of chemotherapy, the present Zactima trial feels relatively tolerable, thus "chemo lite."
We are thankful for the appearance of side effects that reinforce our intuition that we are receiving the real Zactima and we cheer: "Bring them on!"
Copyright 2007
Friday, October 12, 2007
First Anniversary
October 26, 2007 marks my first anniversary as a survivor of cancer and Michael’s as a surviving caregiver. Back then, the doctors were counting my remaining days in weeks and months, chary of going out on a limb with a prognosis of as much as a year’s survival. The statistic the medical community uses to measure a successful outcome for this illness is the five-year mark without recurrence. I am not yet in remission, and I continue to conduct a vigorous daily campaign to rid myself of this evil companion.
The signs of improvement are solid, particularly in the underlying strength of my health. A recent brief spell of "normalcy" reinforced this perception. While crossing an Amtrak waiting room on our last return trip from Charleston, I suddenly became aware of myself in full stride, fueled by energy and bounce, glowing with health, propelled forward rather than dragging myself along. What a thrill to experience my former energetic self. Instantly my eyes smarted with tears of wonder and gratitude. This is cause to celebrate!
And so we are! We are piggy-backing onto our next trip to Charleston, leaving directly from the Hollings Cancer Center for the warm sun and cool mountain breezes of Puerto Rico. The yoga retreat has minimal amenities: no room telephones or TV, no bathtubs (shower only). A pool and stupendous mountain views soothe the body and spirit. In these inspiring surroundings with few distractions, we hope to reduce stress, divest ourselves of mental baggage, and free up our spirits to continue the campaign to eliminate this illness from dominating our lives.
You have made it possible. Our everlasting thanks for being with us on this journey.
Copyright 2007
The signs of improvement are solid, particularly in the underlying strength of my health. A recent brief spell of "normalcy" reinforced this perception. While crossing an Amtrak waiting room on our last return trip from Charleston, I suddenly became aware of myself in full stride, fueled by energy and bounce, glowing with health, propelled forward rather than dragging myself along. What a thrill to experience my former energetic self. Instantly my eyes smarted with tears of wonder and gratitude. This is cause to celebrate!
And so we are! We are piggy-backing onto our next trip to Charleston, leaving directly from the Hollings Cancer Center for the warm sun and cool mountain breezes of Puerto Rico. The yoga retreat has minimal amenities: no room telephones or TV, no bathtubs (shower only). A pool and stupendous mountain views soothe the body and spirit. In these inspiring surroundings with few distractions, we hope to reduce stress, divest ourselves of mental baggage, and free up our spirits to continue the campaign to eliminate this illness from dominating our lives.
You have made it possible. Our everlasting thanks for being with us on this journey.
Copyright 2007
Saturday, October 6, 2007
Near Normal
We are intensely grateful to be home for a stretch after the initial flurry of appointments with the staff of the experimental drug clinical study in Charleston. They seem satisfied with the way things are progressing, meaning that we show up in the doctor’s office on time per schedule with their questionnaires about mood, pain levels, and bowel movements duly completed, my veins continue to stand up to the blood draws, and the ECGs reflect continuing good heart health.
I am experiencing some medication side effects cited in the study materials including mild nausea and fatigue plus some that are less common such as sensitivity to sunlight and a rash appearing on forearms, neck and face.
I am tempted to conclude that the presence of these effects means I am getting the drug, not a placebo. The frustration of this situation is that the effects can also be attributed to symptoms of the illness.
And just to be fair, a third possibility exists: that the side effects are merely confirmation of an even more common, ultimately deadly condition called "aging." I cringe to accept the inevitability of succumbing to such a malady. Small comfort to know that my mind is still stuck at age 27!
We met with our oncologist on 10-3, who gave us the most exciting news since the October 2006 diagnosis: every lab value is in the normal range! That means my liver is functioning as normal, my hemoglobin is carrying adequate oxygen to keep me alert and my kidneys are doing their job.
The cancer markers, however, are up: Calcitonin is up 3% and CEA up 75% vs the previous readings on 7-12-07. The oncologist points out that dying cancer cells can also raise the CEA, which is encouraging in that the trial drug may be responsible, not growth of the cancer itself.
In summary, my underlying health is becoming more stable; the strength will serve me well in rallying my immune system to fight this illness.
My apologies for a long absence from the blog. I pledge to do better in the future. Thank you for standing by me so loyally. I’m sure your support and caring concern has produced the good results I’m feeling today.
Copyright 2007
Posted: October 6, 2007
I am experiencing some medication side effects cited in the study materials including mild nausea and fatigue plus some that are less common such as sensitivity to sunlight and a rash appearing on forearms, neck and face.
I am tempted to conclude that the presence of these effects means I am getting the drug, not a placebo. The frustration of this situation is that the effects can also be attributed to symptoms of the illness.
And just to be fair, a third possibility exists: that the side effects are merely confirmation of an even more common, ultimately deadly condition called "aging." I cringe to accept the inevitability of succumbing to such a malady. Small comfort to know that my mind is still stuck at age 27!
We met with our oncologist on 10-3, who gave us the most exciting news since the October 2006 diagnosis: every lab value is in the normal range! That means my liver is functioning as normal, my hemoglobin is carrying adequate oxygen to keep me alert and my kidneys are doing their job.
The cancer markers, however, are up: Calcitonin is up 3% and CEA up 75% vs the previous readings on 7-12-07. The oncologist points out that dying cancer cells can also raise the CEA, which is encouraging in that the trial drug may be responsible, not growth of the cancer itself.
In summary, my underlying health is becoming more stable; the strength will serve me well in rallying my immune system to fight this illness.
My apologies for a long absence from the blog. I pledge to do better in the future. Thank you for standing by me so loyally. I’m sure your support and caring concern has produced the good results I’m feeling today.
Copyright 2007
Posted: October 6, 2007
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