Linda Later

The Cricket Kit

2011-04-03T14:12:00.000-07:00

With the first hint of cooler weather as Autumn approaches, the crickets return, seeking a warmer environment: inside the house with us, not outside in their summer houses. They appear in our guest bath and the surrounding area having squeezed through the small slit between the guest quarters and the garage. Unwilling to squash them under foot, leaving a gooey mess to scrape up, we have developed a technique for capturing them, carrying them to the nearest door to the outdoors, and flinging them into the grassy lawn far enough out so that they would have a hard time finding their way back indoors. We call this The Cricket Kit. The Cricket Kit consists of two parts: a plastic cup, the short kind with a large opening in which punch is served at overpopulated outdoor summer weddings and bar mitzvahs by the pool; part two is a thin 6x9” flexible rectangle of light cardboard. The procedure upon spotting a stealthy cricket intent on securing a warm winter berth, is to grab the “Kit,” approach the cricket from behind and quickly pop the plastic cup over it. This part of the capture is the trickiest; the little devils have 360 degrees of vision and move like the proverbial drop of water on a hot skillet. Often, three or four attempts are required to secure captivity. The chase does wonders for sharpening one’s reflexes! The next step is to slide the rectangle of cardboard between the rim of the cup and the floor without creating an escape space or inflicting a crippling injury to the cricket’s legs. Carefully lift the assemblage so that light pressure between the cardboard and the upended cup secures the contrivance for the journey to the great outdoors. It is even possible, with a minimum of repetition, to master the journey single-handedly so that the free hand can open the door. You now have a humane way to rid your home of the occasional cricket while righteously donning an enveloping mantle of virtue toward other living creatures. Do, however, be sure that your safari is aimed at a cricket, an essentially harmless, if nervous, insect. Save the fly swatter technique for those critters of dubious origins or spider-like configurations. The cricket, incidentally, is NOT a euphemism for cockroach, a creature deserving, in my opinion, instant execution energized by a tsunami of revulsion. But that is my entomological bias; my empathy and respect for the integrity of other living creatures does not extend beyond the world crickets. Completed July 11, 2010

Three Years Ago

2009-12-01T05:36:00.000-08:00

Three years ago I assumed responsibility for the LindaLater blog to stay in touch with those who concerned themselves with our thoughts and reactions to this medical crisis. At that point my medical condition was quite critical, and regular bulletins posted to the blog were the speediest, most efficient way to communicate, especially during the year-long search for an accurate diagnosis and identifying an effective treatment plan.

Circumstances since then have changed considerably as treatment progressed. The CT scans taken every three months have shown a progressively slowing rate of growth of the liver tumors and, finally, a full halt sustained over the past six months. This can’t be considered a “cure” or even a remission. It is merely a different stage of the illness, one substantially less critical than that of three years ago.

I am still in the thick of the cancer forest, so to speak, but the trees seem to be thinning. As I gain strength and am able to do more, the drama of my situation diminishes. My complaints have become progressively more picky. I’m really scraping the bottom of the barrel looking for significant signs of illness. The positive signals of good health have begun to predominate, cause for celebration.

With suspense diminishing from post to post, the initial purpose of the LindaLater blog has been fulfilled. Now a new, more personal form of communication seems more appropriate. I invite those of you who are interested to contact me directly by email so that we can carry on a two-way “conversation.” I want to keep in touch and know how you and those dear to you are doing.

Each of you has contributed hugely to lightening this load for both Michael and me. The tsunami of thoughts, prayers and affirmations you sent our way has sustained us, delivered a miracle of ongoing life, and graced us with your loving companionship in our passage through this trial. You have our deepest enduring gratitude.

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted December 1, 2009

Turnabout

2009-10-10T10:12:00.000-07:00

Michael:
After living for the past three years inside Lynn’s Cancer Universe, I had adjusted to the situation: Lynn has cancer. She is The Survivor. I don’t have cancer. I am The Caregiver. Suddenly that neat division of roles disintegrated: I have cancer. But I am still The Caregiver. Lynn still has cancer. But she is now The Caregiver also. All very unsettling, apart from the collapse of my conviction that it could never happen to me.

Diagnosis was Malignant Melanoma, right ear, not too advanced but very dangerous, confirmed by positive biopsy August 24th, mandating immediate ear surgery plus removal of lymph nodes (neck). Lynn assumed The Caregiver role instantly with her usual love, dedication and organization. She drove me to my appointments and surgeries, was at my side every moment.
Together we sweated out the absurd delays in finally scheduling the surgery. It was supposed to have been not just “ASAP”, but “Yesterday”. But it took nearly six weeks (of sleepless nights) before the two specialty surgeons (Oncology and Reconstruction) could manipulate their schedules to meet me in the O/R on Oct 2nd.
Result: all biopsies now negative; I’m left with a weird right ear, Back to my Caregiver role but now a legitimate member of our local Cancer Survivors Group.

Lynn:
A wrenching surprise! No less anxiety-producing, but coming from a very different viewpoint.

Instant guilt: why didn’t I notice the telltale mark sooner? How long had it been there? Guilt is all about self-involvement, not a sterling quality for a caregiver. I was jarred into looking beyond myself and finding ways to comfort Michael and bring a sense of normalcy to our lives.

This role reversal has sharpened our attention to the moment, what we can do for each other now. I perceive more balance. The timing is good, coming when I feel stronger, more capable and more confident about managing, with ongoing help from my spouse, two illnesses.

We have scraped by another hard place in the road, we are still here for each other, and continue to draw comfort from having you in our lives.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: October 10, 2009

No Change

2009-10-09T08:04:00.000-07:00

“No interval change in hepatic metastatic disease,” reports the radiologist of the abdominal CT image.

“No change mediastinal nodal mass,” reports the radiologist of the chest CT.

Lymph nodes are “Unchanged” in five views and “stable” in the sixth view with “No evidence of disease progression,” in the neck CT.

These are the results of the imaging series. Blood analyses results not yet available.

Lovely words! I could bear hearing those words over and over again!

Each of you had a part in bringing this about. Our thoughts, prayers and affirmations are with every one of you with joyful hymns of thanks.

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: October 9, 2009

Check Up Itinerary

2009-09-19T09:01:00.000-07:00

Soon we will be returning to Charleston for the every-three-month check up to monitor the status of the cancer tumors.

The CT scans of my thyroid, and chest/abdomen/pelvis will be checked against those taken on the previous visit. Any changes in the size of the tumors will be noted in the radiologists’ reports and passed along to our oncologist for his meeting with us.

We are concerned about the amount of radiation I absorb and accumulate from these frequent scans over the long term of the study. This is one of the risks we accepted in order to participate in the study of the experimental chemotherapy Zactima.

The check up concludes with a blood analysis of seven different cartridges of blood, an electrocardiogram and consultation with the oncologist. He reviews and explains the results of the imaging and blood work, notes any changes I report for symptoms and side effects, and conducts a physical exam. He also patiently answers the many questions we have accumulated during the previous three months.

One of my responsibilities as a participant is to maintain a log for the twelve weeks between visits. These track the frequency of bowel movements, prescription pain medication taken, measurements of pain – where and how much – and “Quality of Life.” For the latter, I rank, on a five-point scale from “Not at All” to “Very Much”, such things as the severity of symptoms and side effects, how close I feel to friends and family, the emotions I experience, such as worry and anxiety, and how the illness affects work, sleep and fun.

In addition to the medical necessities, we make sure we include the fun part by exploring the many fine museums and traditional Low Country cuisine offered in this gracious and elegant city.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: September 19, 2009

Mood and Food

2009-09-10T06:44:00.000-07:00

Nausea is thoroughly disabling, sometimes stealthy, other times striking with meteoric impact. It sours a cheerful mood, disarms initiative, clouds reason and skews perception. Positive thoughts languish while negativisms multiply.

This kind of nausea persists without the satisfaction of a good, stomach-clearing vomit, signaling the beginning of relief. I spend hours on edge, expecting any moment to fling the contents of my stomach into a basin. Then the nausea slinks off, snatching away the satisfaction of bringing it to fruition, then stomping it out.

During this illness, I have sought explanations for nausea in hopes of concocting a remedy. I looked first at my food intake: patterns or ingredients provoking a gastric rebellion against a culinary insult, such as too many jalapenos. I log the fluctuations of nausea in a vain attempt to identify recurring connections with various foods. A year of scribbling has revealed no suspicious relationships.

Nausea fuels mood swings. I have learned to tolerate a low level of constant nausea with minimal flattening of mood. As the nausea level rises, my mood plummets. This illness has tilted me from an awareness of the need for preparedness, formerly an admirable character trait, into a world-class worrier, a burdensome status. For each situation, I seek all possible causes for concern. Since preparedness didn’t help avert cancer, my reasoning goes, perhaps worry can compensate, ex post facto, for this failing and help restore a sense of productive self-management.

Ah, the meanderings of an under-occupied mind! This is the point at which my more tolerant friends would say: “Get a life!” Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: September 10, 2009

Grief

2009-09-04T09:17:00.000-07:00

During the last year of my mother’s life, I made four trips to Texas thinking I was preparing myself for her departure and wanting to spend as much time as possible with her. Reflections on what my life might be like afterwards collided with a wall of incomprehension, a conscious awareness that I was unable to gain insight into my feelings or prepare a First Aid Kit for Feelings that would help me get through the aftermath of her passing.

The best I could do was to attempt clear communication about what our life together had meant to me and how her being in it made a difference for me. That was my resolve. But the wall of incomprehension remained unbreachable. Throughout her life we had difficulty communicating, and simple desire to do so as the end of her life approached was insufficient to clear the hurdle. My first thought as she stepped across the threshold of awareness was: “Oh! Just one more thing, Mom.”

Grief, to me, has come to mean simply the inability to converse. All conversations with the absent one become one-way communications with imaginary responses. Mostly I grieved for her through my dreams with a sense that we were having another visit, perhaps another chance to communicate that “last thing.” In the four years she has been gone, I have gradually come to know her better by revisiting memories through the prism of common experience that she negotiated before I passed that way. In that sense I feel she is still with me. That is a comfort.

Stay well; your company comforts me.

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: September 4, 2009

Misconceptions

2009-08-25T12:14:00.000-07:00

Several years ago, as newcomers in a homogeneous community of seasonal Florida residents, we duly visited our neighbors, introducing ourselves and inviting them to drop in for an evening of conversation and a nibble or two, to get to know one another better.

Expecting a moderate turnout and wanting to encourage conversation and promote circulation we arranged the furniture in a number of 2, 3 and 4 person groupings.

Our first hint of plans gone awry was that a throng of guests arrived at precisely the designated arrival time; a line actually formed outside the front door, limiting our ability to acknowledge each guest with due thanks. Over the years, I had come to expect guest arrivals a decent interval after the stated starting time, usually about 15 minutes. These precious moments were my sweet reward for prodigious effort and thoughtful consideration of my guests’ comfort before welcoming them at the front door.

The next misconception was food: every guest couple carried a contribution fit to feed a well-attended church supper. Since we already had enough to feed everyone the equivalent of a meal in appetizers, we were hard put to find counter or serving space. We had tapped into an unsuspected mother lode of provisions, culinary creativity and generosity.

We poured drinks and divvied up bins of food, asking people to find themselves a seat. Then we turned to circulate among our carefully arranged conversational groupings and whip up some witty repartee to be carried from cluster to cluster as people shifted and reformed according to conversational whims.

While we were busy our guests had rearranged the offered seating into a single large circle lining the perimeter of the room. The result suggested an oversubscribed therapy group stifled into uncomfortable reticence by the expanse of the circle’s girth: an occasion for performance rather than an opportunity for conversational intimacies.

Our lesson: the best intentioned plans may not survive encounters with unfamiliar social customs. After that halting start, we never fully connected with our neighbors and eventually moved out.

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: August 25, 2009

Waving Etiquette

2009-08-20T06:26:00.000-07:00

To add interest to the exercise regimen recommended by our oncologist, we acquired the habit of early morning walks on the local roads (no sidewalks here) to inspire us and lift the mantle of drudgery associated with mandated exercise. While doing so, we developed an appreciation of the etiquette, as interpreted by Tidewater Virginians, of signaling silent passing courtesies upon encountering one’s neighbors on a dead end road frequented only by residents, contractors and real estate agents. (we afoot, they behind the wheel of their car, SUV, pick-up or other conveyance).

We wave at every passing vehicle and mentally note the caliber of response. Broad categories of motivation can be attributed to those who respond: from simple courtesy to strangers, to “I see you every day and acknowledge your get-up-and-go” to “keep at it” to “your persistence is admirable” to “You go, girl!” Finer gradations of salutation emerge when contemplating the styles or responders.

The single finger raised from the steering wheel is the minimum acknowledgement signaling recognition without encouragement. No guarantee of repetition. Slightly more forthcoming is the four-finger raise, palm still firmly pressed against the wheel, probably the safest response for both driver and walker. Next warmest greeting is the hand lifted from the wheel with a single abbreviated motion in frank acknowledgement of the fleeting encounter with a minimum of commitment. More intense greetings scale up from a broad swing from the elbow reminiscent of a parade queen's gesture, to several vigorous waves, and on to the ultimate hand extended out the window, fingers splayed in warm recognition of a fellow wannabe athlete.

Stay well, and keep waving!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: August 20, 2009

Moving On

2009-08-06T06:52:00.000-07:00

During the past three years, I have faced the greatest challenge of my life so far.
The thunderbolt of the diagnosis tipped me into a deep and ongoing review of the premises upon which I had built my life to that point. The old comfortable handholds of memory and habit have faded; the new ones are as yet not fully realized. My dilemma now is: do I choose the easier path and just return to an approximation of my former belief set, or do I embark on a more challenging course, redefining my foundations as they appear to me now from an expanded and informed viewpoint.

As the struggle to free myself of this illness occupies less of my daily allotment of energy, I use the liberated time to explore who I am now while concurrently reacquainting myself with who I was before Diagnosis Day. I find, in meditating on that prior individual, that I am now working to shed the old skin that fit just fine for many years, while simultaneously growing a new skin, one more comfortable to the evolving me than the previous one.

All of this is happening on the back burner of my mind while I attend to tasks that don’t require thoughtful reflection; gardening is the most satisfying. I can pay attention to distinguishing weeds from perennials while subliminally concocting recipe alternatives for a “revised” me, checking an ingredient list, noting “keep this” or “replace that.”

I have been given a reprieve. How will I use the time left to me? Since I don’t know how long that will be, I’d better get on with it!

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: August 6, 2009

LOCKSTEP

2009-07-26T15:18:00.000-07:00

The latest blood work results are in from our recent trip to MUSC in Charleston, SC. For the first time in many months, both cancer markers are tracking downward meaning there are fewer cancer cells counted this time versus the last count in April.

The CEA (CarcinoEmbrionic Antigen) test that measures cancer cell generation is down 16% versus the April measure. This is the lowest level recorded since August 2007 when I volunteered to participate in the experimental drug study, a 74% drop from the starting point. The oncologists give greater weight to the CEA results than the Calcitonin measure which they consider relevant, but of lesser significance.

The Calcitonin (thyroid specific) measure is down 10% versus the April result; since August 2007 a drop of 57%. As opposed to a basketball game in which the highest point makers win, this contest becomes more successful as the numbers in the blood tests decline. Fewer cellular bad guys swimming around my circulatory system frees up the good guys to get on with their job of restoring my health. The lower the count, the healthier I become. The last time these two measures both dipped down at the same time was one year ago.

I know I’m healthier now than I was then because I feel stronger. The icing on the cake is the test results that prove it.

We hold you in our thoughts. Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: July 26, 2009

Graduation

2009-07-22T07:39:00.000-07:00

Doctors’ visits delineate the life of a person with cancer, marking the passage of time and the progress of the illness. During the initial diagnosis and development of a treatment plan I saw the oncologist every two weeks, just barely enough time to note changes in symptoms or the appearance of side effects indicating response to treatment. With the illness in a critical, fast moving phase, frequent assessments afforded a nimble response to intercept and deflect further decline.

In my case this was especially crucial because surgery, radiation and targeted chemotherapy were all ruled out. At that time, the origin of the cancer was still unidentified to a certainty: without a target, treatments were meaningless. The source would simply continue sending cancerous cells back to the liver and perhaps to new sites as well.

Then, an experimental drug clinical study to treat the form of cancer I have was found at Medical University of South Carolina. Participation in this study mandates check-ups there with the study oncologist every three months. With active treatment underway, my primary oncologist here in Virginia, ever watchful of developments with this new treatment, extended visits to 6 week intervals: the first graduation. Later, when tumor growth began to slow, however gradually, and then halted, he extended visits to three month intervals.

Last week, after seeing the MUSC reports of tumor shrinkage, he promoted me from 3 month visits to SIX MONTH check ups, a significant change signaling confidence in the efficacy of the current treatment. This is cause for celebration!

A wonder! The power of many to shape positive results! Our gratitude to each of you for staying the course with your contribution of positive energy to our cause.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: July 22, 2009

Scale-iness

2009-07-09T06:13:00.000-07:00

Each doctor’s visit begins with a question: “How do you FEEL?” They see and quantify symptoms and side effects by observation, lab results and imaging reports. They want to know how I rank unobservable measures such as pain and nausea on a scale of 0 – 10, zero being normal and ten being the worst imaginable. Many elements, experienced individually with varying degrees of intensity, contribute to an overall sense of wellbeing or gloom that in itself influences perception. Here is my current self-assessment compared with the last taken ten months ago.

Each item is assessed by selecting a number representing how I feel at that moment from the 10-point scale. When the list is complete, I check back and compare the current reading with the previous one to see what, if any, changes occurred. The periods between assessments are long enough that the likelihood of carryover influence is minimal.

PAIN 4 (↓ 1)
NAUSEA 3 (↓ 2)
FATIGUE 4 (↓ .4)
STRENGTH 5 (↓ 1)
DIARRHEA 6.5 (↓ 1.5)
RASH 2 ( ↔ )
EDEMA 1 (↓ 1)
SKIN SENSITIVITY 2 (↓ 4)
SIGNATURE 2 ( ↔ )
TASTE 0 (↓ 3)
APPETITE -4 ( ↔ ) 0=norm;<0=high;10=none
DRY MOUTH 3 (NA)
POSTURE 2 (↓ 2) weakness on left
SLEEP DISTURBANCE 3 (↓ 1) distress, insomnia
ANXIETY 3 (↓ 1)
DEPRESSION 5 (↑ 1)

This exercise may appear to be an obsessive infatuation with numbers. However, it is in my own interests to attempt to accurately communicate these criteria to the doctors so as to balance the information found through accepted scientific methodology. My self-assessment becomes one factor in their prognosis. The professionals have their tools; these are mine.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: July 9, 2009

Michael Returns to (His) Life

2009-07-02T05:23:00.000-07:00

For almost three years Michael has been anticipating my needs plus shouldering the Chores of Living – everything that keeps the engine of life going from day to day. Prior to D(iagnosis) Day it took two of us to keep a finger in the dike. As this health crisis engulfed us, we immediately pared back to essentials.

Now, with my returning strength, we are reverting to a more equitable division of responsibility: I feel better for carrying my share and Michael can return to his choice projects without guilt or incurring an insurmountable backlog.

Relieved of a dual share of responsibilities, Michael is now resuming HIS life. Mostly that means puttering aboard Prudence, tinkering with new ideas and realizing creative improvements to make her sail better. The great seven year rebuilding project was finished in 2004 but, paradoxically, the To Do list never gets shorter.

A major project, released from hold and recently completed, was assembling and documenting the life work of Michael’s father, the inventor/engineer Solomon Adler. The objective was to find a suitable home that would preserve his scores of patents and drawings, along with a collection of hand-made working prototypes demonstrating the developmental stages of what became the PaceSetter sewing machine series, still being manufactured by the Brother Corporation. Now, a deed of gift has transferred ownership of this meticulous collection to The Smithsonian Institution’s Museum of American Invention.

With greater frequency these days, I find Michael stretched out in the recliner with a book and a glass of iced tea at his elbow. I grin with pleasure to see him, if briefly, stepping aside from a demanding burden to refresh himself and take care of his own health.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: July 2, 2009

I Ran

2009-06-28T06:48:00.000-07:00

The traffic was heavy at morning rush hour along Staples Mill Road past the Amtrak station. Mindful of gasoline economy and environmental pollution, we opted to walk the block and a half separating us from a caffeine boost at Dunkin’ Donuts. No crosswalks defined pedestrian safety zones for crossing at the intersection. A sidewalk offered safe passage to walkers, although scattered pebbles and random tufts of grass suggested lack of use in this auto-dependent, strip mall-saturated suburb of Richmond.

Spying a break in traffic between signals, we (unlawfully) stepped onto the six-lane highway and began to cross at a brisk walk. As we reached the midpoint, traffic began to move, devouring the gap between us.

Move out! every instinct screamed at me. Before I realized it, my mind had leapt past the assessment, judgment and decision processes, bringing me directly to action: Run!
With Michael keeping pace at my side, a brisk sprint brought me safely, with margin to spare, to the far side of this heavily traveled roadway.

Without a conscious thought, I had run for the first time in almost three years! I feel as if I have leapt a giant chasm on the way to recovery. Recently I have been subliminally aware that I was approaching a milestone: pushing myself to the next level of my treadmill workout by adding sprint intervals. Now the real life spontaneous evidence has forced me to accept that I am ready to move on without delay.

A sense of capability floods my being. I am grateful to have your company; your support has put wings on my feet and determination in my heart.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: June 28, 2009

"Relay for Life"

2009-06-26T13:59:00.000-07:00

This is the third year I have qualified to participate as a cancer Survivor in this nationally sponsored, locally organized event and the first time I have been able to attend. Not being much given to social welfare gatherings that throw together persons largely unknown to one another who nevertheless share support for the designated cause, I set off with a sense of obligation rather than anticipation to join fellow survivors, their caregivers and other concerned parties.

The event was not a cookie-cutter replication of scripted, rah-rah half-time style boosterism to court media attention. The keynote theme is HOPE. Cynically, I suppose, and subconsciously I expected to hear: “Look what we are doing for you to keep your hope alive.” What I heard instead was an appeal to reach out to each other for support and inspiration. The unexpected turn-around rattled loose my expectations, allowing me to hear a broader message with diverse meanings.

It was a moving event, especially so to see persons with illness far more advanced than mine smiling, their eyes triumphant as they completed the quarter-mile course, their caregivers beaming at their sides.

Despite the size of the gathering and my negative expectations, I felt a one-on-one connection with the employee of a local retirement community who packed the box lunch I enjoyed. I could envision a person spreading the tuna fish salad on a roll and filling the deviled eggs, then, with heart, assembling the contents and sending it out directly to me. The idea that someone who didn’t even know me would reach out to me in that caring manner was comforting. The gesture reinforced my commitment to keep stepping along with a positive attitude toward whatever outcome awaits me.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: June 26, 2009

Comforts of Family

2009-06-10T07:20:00.000-07:00

One of my six brothers just departed after a four day stay. Each family visit has its own flavor depending on the menu of participants and the recipes of current and past events that evoke the aroma of emotions long dormant.

If the Gallup organization were looking for a poll sample they would have no need to look further than our family for diversity of age and occupation. From the oldest (me) to the youngest covers a span of 16 years, a generation’s worth of viewpoints. So, when I want support, I call the siblings closest to my age in the family lineup. Their viewpoint is more likely to incline towards mine where wisdom is measured by the extent of life experience. They are less skeptical of an older sister’s dicta, since the divergence between their life experience and mine is smaller.

When I want to open windows and let in the fresh air of contemporary thinking, I consult with the younger end of the family. If I hear “Hey, dude, what’s up?” I know I have reached back far enough to connect with the entire spectrum of contemporary opinion.

We have an attorney, an editor, a teacher, a retired marketer (me), a computer genius, a retired clamdigger, a retired phlebotomist (now a professional grandmother), a mechanical whiz, and a retired quality control specialist and former Marine. And that is just siblings; the range of occupations becomes yet more diverse if you include spouses, children and grandchildren, cousins, nieces and nephews.

If it takes a village to raise a child (thank you, Hillary), then it required an entire suburb to raise the Chapmans.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: June 10, 2009

Uncertainty

2009-06-04T06:33:00.000-07:00

The final piece of April’s blood analysis has dropped into place with mixed results. CEA (CarcinoEmbryonic Antigen) monitors the creation of new cancer cells. A decline in the cell count indicates improvement in the body’s ability to curb cancer cell generation. April’s report is down 28% from January’s. Of nine consecutive measures since the beginning of my participation in the experimental drug study in August 2007, seven declined from the previous measure.

The second measure is the Calcitonin level, specific to the thyroid function. A decline indicates less cancerous activity than before. The April results are up 34% from January’s total, continuing an erratic up and down pattern: four of the last nine measures increased and five declined.

The two measures do not track each other. True, they measure different aspects of cancer activity. But I would feel far better if they marched, shoulder to shoulder, in the same direction (down!). I feel the disappointment a child might upon hearing disappointing news after months of effort to conform to a discipline believed beneficial but displaying snail-slow results: “I did everything you said, and it hasn’t turned out all right. At least not enough to calm my fears.”

The three doctors (two of whom are oncologists) who monitor my status vis-à-vis cancer don’t share my concern about erratic results. Far more significant, they say, is the overall improvement: reduced intensity of chemotherapy side effects, thicker hair, returning strength, reduced fatigue and nausea, and weight stability. Listen to your body, they say; trust what it tells you. I hesitate to trust my interpretation of where I am because I cannot measure or quantify the weighty bias of hope. My personal bête noir, the unrealistic, storybook ideal of perfection, lures me on while cunningly remaining just beyond grasp.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: June 4, 2009

Vacations

2009-05-29T11:37:00.000-07:00

Vacations are for gaining perspective and adjusting assumptions. Michael and I have been out on the boat for almost three weeks. As ties to our home dock became more tenuous, fundamental perceptions gradually illuminated our awareness.

Our hometown: Its rural charm has been nibbled away and elbowed out by the seduction of convenience, expedience and fashion. Wal-Mart has come to town, challenging local merchants to upgrade their curb appeal and to keep an alert eye on current trends. The downtown area has been “quaintified,” with remodeled shoppes and special events (farmers’ markets, monthly walk-abouts, annual festivals) evolving from rural to suburban, less a geographic designation than a socio-cultural phenomenon. Expectations have ratcheted up so that “going to town” is more a mall experience of selecting from many options than, as formerly, determining what we will “settle for” among what is available locally.

The towns we visited reminded us why we chose this area for our retirement. The whip lash of deceleration, stepping aside from the constant sprint of a fully-packed retirement to the sauntering pace of a paradoxically recent earlier era was extreme.

For example, thinking we could post blogs from an Internet “hot spot,” we packed the computer and sailed away. The hot spots were inadequate to non-existent, isolating us from the world of the Internet. Many towns had no groceries or adequately stocked convenience stores within walking distance of the local wharf (although most boasted an ice cream emporium within steps of the dock). So until my health has stabilized we will sail closer to home and the comforting presence of practitioners familiar with my exotic medical requirements. Remote is okay as long as it is near home.

You are never far from our thoughts, no matter where we are. Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: May 29, 2009

Middle Ground

2009-05-07T17:28:00.000-07:00

For years I have claimed to seek a “nice boring life,” relief from the intense engagement required for riding a torrent of experience. Well, here it is and this is what it looks like: The mental landscape around me is arid, an occasional tuft of brown grass ground to a nubbin by barely stirring air. Dry moguls relieve the sere sameness; they grope for the company of the next anomaly. I have a prairie dog view, eyes at ground level, eyebrows raised in barren hope of relief from the daily blah-dom.

I still have the option of hunkering down into the dim world of disengagement, or leaving the flavorless safety of the burrow behind and stepping out in search of new experiences. I finally have the stamina to take on a few non-cancer-related commitments, lifting some of the burden from Michael and giving me opportunity to catch up on a two year plus backlog of paperwork and projects.

By no means do I imply that the battle with cancer is won. We are at a new plateau, a resting place on the trail between avalanche and the bunny slope. The remainder of my life will be spent in watchful observance of my health and adherence to positive physical and mental disciplines. Cancer is well known to lash back after a period of quiescence. Here is where Michael and I look for your company. To know that we have such loyal, caring companions for this trip is comforting.

This is the most exciting period of boredom I’ve had in my life!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: May 7, 2009

A Regular Person

2009-04-30T09:48:00.000-07:00

Recent changes in my condition at first glance looked like a return to the bad old days of new symptoms and weird side effects appearing unexpectedly.

I’ve come up lame along the right side of my neck causing acute pain when turning my head. Other pain has lodged in my right hip making any movement excruciating. At my chiropractor’s office last week I described my “symptoms.” The doctor immediately put his finger on it, literally, as an injured shoulder muscle and a strained gluteal muscle.

In a way these are side effects, but not of illness or chemotherapy. They are common to people who have “over trained” in their personal exercise routine. A light massage of the injured areas gave immediate relief; I was sent home with a stretchy band and instructions for its use to speed recovery. He also advised trimming my overly ambitious workout routine (six days alternating 90- and 30-minute workouts). The fact that any exercise enthusiast can have the same injuries encourages me. I feel like a “regular” person!

Another recent episode reinforces that feeling. At a social gathering, several of our friends (really!) teased me about my scrawny butt. I was aghast until I realized the humor and friendly intent of the jibe. Apparently others see me as strong enough to take a tease, and that’s a valid reflection of their assessment of my health.

Just recognizing that some of the aches, pains and vicissitudes I am experiencing are shared by others free of illness encourages me to wallow in the pleasure of feeling like a “regular” person. I haven’t forgotten what it’s like to feel that way and am hugely grateful to all of you who have supported us in this quest.

Stay well!

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: April 30, 2009

Belly Laugh

2009-04-18T18:26:00.000-07:00

It’s spontaneous. It’s strong, deep and satisfying. And it caught me off guard.

Now, I can’t even remember what plucked my sense of fancy. Some silliness crept up on me, enfolded me in a bear hug and liberated my sense of whimsy. Suddenly I found myself laughing with abandon, fully experiencing the physical and psychic tickle of mirth.

Reactions moved at lightning speed, piling one on top of the other. I threw my head back, creating a clear escape route for the bursts of laughter scrambling their way up my throat to freedom; closed my eyes, the better to shut out extraneous stimuli and focus singly on reacquainting myself with the pleasure of abandonment I had almost forgotten existed.

A sense of discovery illuminated the experience. The authenticity of my laughter rang out clearly, even to my own ears. Long-estranged sensations rushed in to settle into their corner of home, welcoming and embracing the moment and each other. The comfort of self-at-home instantly reasserted itself, polishing up psychic furnishings that had long faded from my awareness of now.

As my health improves, I am reminded by contrast with two years ago how very ill I was then: more ill than I realized at the time. So, too, as I laughed, I instantly recognized how long it has been since succumbing so completely to a thoroughly satisfying belly laugh.

Norman Cousins (Anatomy of an Illness) proved again: laughter is the best medicine; I’m looking forward to more “comedic therapy” treatments.

Stay well.

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted April 18, 2009

Hello Again

2009-04-09T08:31:00.000-07:00

Thank you for your phone calls and messages. Hearing your voices and news of your lives has been a great lift to my spirits during this self-styled sabbatical and throughout this journey of discovery.

JANUARY: The news from January’s trip to Charleston for the experimental drug clinical trial check-up continued holding steady with more or less equally balanced changes. Four tumors in my liver were scanned: the two smaller tumors showed some growth while two larger tumors actually shrank. This is the first conspicuous shrinkage we’ve had since I joined the trial a year and a half ago. Blood testing also turned up few variations from “normal range,” and those were close enough not to be a worry or require treatment. We’re building an impressive track record!

APRIL: The most recent trip, completed last week, is even better. From four radiology reports: “Essentially unchanged” (abdomen, liver); “without evidence of metastatic disease” (pelvis); “Stable…without new nodes or masses … thyroid unchanged” (neck); “no evidence of … abnormality. Unchanged … lymph node.” (chest).

As for the blood work, the CEA (carcinoembryonic antigen) is down 22% since the January analysis. This means that the cancer cells are creating fewer new cells than before. The results of the second (Calcitonin) markers will be available soon. I’ll pass them along when I have them. Other results from the blood testing are all Within Normal Range or close enough not to be a concern. Overall, a “no change” situation, the third consecutive check-up showing little or no changes.

Thank you for being with us so faithfully.

Copyright 2009
Lynn Chapman-Adler
www.lindalater.blogspot.com
Posted: April 9, 2009

Yoga

2009-01-02T13:40:00.000-08:00

As a long time jock, my habit has been to gather myself for an effort much as a race horse collects itself preparing to burst from the starting gate. A sporadic mix of jogging and fast walking satisfied my impatient nature for a long while, though the accumulated years eventually slowed me down, not by intention, but by performance.

Creakiness of my movable parts gradually eroded my enthusiasm for getting started and sustaining a respectable pace. To help counterbalance the excesses of cardio vascular indulgence, and to stretch me out between keyed-up activities, I explored yoga.

During yoga practice, I am constantly impressed with how, instead of relaxing into a pose to gain the greatest possible stretch, my body tenaciously clings to the habit of tensing for effort. As I shift my awareness to the particular part of me being stretched in a pose, I discover that my muscles are clenched against the stretch, limiting the value to be gained from holding the pose. The effect of this discovery is profound. I become aware of a whole different concept of movement, to engaging and disengaging, to energizing or relaxing various parts of my body to achieve grace, ease and flexibility of motion.

Now the regular practice of yoga helps to reduce morning stiffness and complaining joints. Recently I added Pilates to my regular exercises to complement yoga in rebuilding my core strength for structural load bearing. By restoring the muscles that support my upper body to their intended condition, I will rebalance my posture and reduce stress on parts of my body not meant to bear weight. Good-bye creakiness!

Keep well. Our thoughts fly to you carrying messages of good will for you throughout 2009.

Copyright 2009
www.lindalater.blogspot.com
Posted January 2, 2009

Christmas 2008

2008-12-26T08:21:00.000-08:00

Christmas memories from childhood creep into my awareness and I swear right now I can smell the aroma of a mince pie cooking despite an empty oven. I relive the agonizing anticipation that built in me during that last half hour on Christmas morning before the household started stirring and we could inspect the goodies in our bulging Christmas stockings. Magically, during the night while we slept, they were tucked next to our beds so that they would be the first thing we saw when we awoke in the morning.

The stocking experience is the quintessential spirit of Christmas for me. Our family is large (10 of us kids), so the production of the elf squad was severely taxed to meet the Christmas Eve deadline. The stocking contents varied each year, but as the years rolled along, a collection of essentials became mandatory. Especially memorable are the wind-up toys: drum-beating marching musicians, dinosaurs stomping, race cars clattering, every creative incarnation imaginable.

Nuts, fruits and sweets filled the smaller spaces, with a Clementine in each toe. Exotica included tinned smoked oysters, clams and mussels. A yearly set of jacks or paddle balls were expected. All the edibles were consumed willy-nilly before breakfast: smoked oysters on top of marzipan on top of freshly cracked walnuts.

The stocking tradition has become one of our most treasured family memories. All year long we remained on shopping alert collecting oddities, squirreling them away for the Christmas Eve wrapping and stocking stuffing marathon. One year two of my sisters in adjacent beds shared real stockings: ready-to-be-discarded panty hose; they each got one stuffed leg.

Michael and I wish each of you a warm Christmas season filled with treasured memories: those of the past as well as those yet to be generated.

Copyright 2008
www.lindalater.blogspot.com
Posted December 26, 2008

A Nice Boring Life

2008-12-18T07:15:00.000-08:00

As a fifteen-year-old I dreamed of having an exciting life. I’m not sure I had a clear idea of what that entailed, but I was sure I would recognize it if I saw it. Countless exciting opportunities flung themselves across my path through life and rarely did one go by without my investigating if not actually acting on it. Curiosity urged me on to many adventures. (See http://www.flickr.com/photos/lee_guilfoyle/2739015404 for one example.)

Ultimately, over time and with a developing sense of self-preservation, I balanced unbridled curiosity with an ever-improving skill in risk analysis. There eventually came a tipping point at which the discarded opportunities began to outnumber the presenting possibilities. Life by Chance was beginning to pall. I yearned for a “nice boring life.”

It has taken me years to craft a Life by Choice rather than awaiting the capricious appearance of opportunities. Now I seek miniature wonders in the world around me. A plethora of corn and soybean fields nearby comfort me with their verdant textures fluctuating through seasonal changes. Morning walks take me past telephone wires laden with societies of song birds that, alarmed, rise in concert to flee my approach. As spring nears, we look forward to welcoming the return of nest-building ospreys and the appearance of their fledglings.

I am thankful for a rich life crammed with many diverse experiences and fascinating people eager to share their zest for life with a kindred soul. Fortunately, many are still in my life, including my beloved mate with his endless forbearance and leavening influence on my most ambitious enthusiasms. Thank all of you for being there with me over the long haul and advance thanks to those of you who have yet to appear.

Copyright 2008
www.lindalater.blogspot.com
Posted December 18, 2008

Windows on our World

2008-12-11T06:59:00.000-08:00

The first thing I notice about getting better is my energy level. Stretches of time stitch themselves along when suddenly I notice that I am doing significantly more than I was able to do a few months previously. A window opens and the fresh air of awareness arouses my senses to an appreciation of returning health.

Despite the onset of winter, the days seem longer because we are living each day more fully. As the sun sets, I can look at a list of minor accomplishments and extract a sense of achievement for having crossed them off the “to do” list. Before Diagnosis Day two years ago, the approach of dusk typically ignited in me a flair of frustration at the list of chores undone.

My criteria for finding daily satisfaction from accomplishments was high and inching ever higher back in my “normal” days. Instead of savoring the past or anticipating the future, I now find more time for smelling flowers, for tending to the moment, for throwing open windows.

What is different now is the magnitude of energy required to complete each task. As recently as two months ago completing every tiny little task required totally exhausting my energy reserves. Now I can string together several tasks before crumpling. Discovering fresh energy is like throwing a log on a dimming fire: Sparks fly celebrating their liberation. Flames dance with renewed vigor hungrily devouring fresh fuel. Embers glow, radiating intense contentment. All is well with our world.

As the year draws to an end, we wish the same renewal for you and your family in the minutes, months and years of your lives to come.

Copyright 2008
www.lindalater.blogspot.com
Posted December 11, 2008

Thanksgiving

2008-11-25T17:59:00.000-08:00

Today is our third Thanksgiving observance since Diagnosis Day. Considering how grim the picture was at that time (2006), it is a miracle that I’m even here, and THAT is worthy of celebration!

We are thankful for all the nausea; it signals that the chemotherapy is at work. That side effect is now mostly gone so we celebrate the strengthening of basic health. One signal of health is the “WNL” results on the quarterly blood analysis. Within Normal Limits means that, except for the cancer markers, my blood looks just like any normally healthy person’s blood. Let’s celebrate!

The cancer markers are less consistent. The overall trend since starting with the AstraZeneca chemotherapy (8-13-07) is down to within celebratory levels: The general cancer activity marker, CEA, is down 66% since then; the specific thyroid cancer marker (Calcitonin) is down 71% in the same time frame. Down is good because it means a lowered level of cancer cell activity. Let’s celebrate!

Your support, prayers and affirmations have been a wave bearing us up through scary, uncertain times. There aren’t Thanks enough in all the world to adequately express our gratitude for your staying the course with us. Our constant love goes to you and your family with wishes that your Thanksgiving is as bright as you have made ours.

So let’s go directly to the bottom line and serve the turkey!

Copyright 2008
www.lindalater.blogspot.com
Posted November 25, 200

2008-11-25T17:57:00.000-08:00

Down Days

2008-11-20T07:51:00.000-08:00

At this time of year my spirits droop, weighed down by added hours of darkness, the preponderance of days with anemic daylight and chill breezes. Too few are the days that elevate my spirit with the joy of being alive: crisp, clear skies, bracing gusts and sunlight warming my face. It is time for a seasonal inventory of my arsenal of weapons to combat weather- and spirit-weariness.

My criteria for inventory assessment: Antidotes must be able to be started within hours if not minutes, completed in less than three days, and have a lasting effect. Bingeing on antidotes is not the answer; the point is to savor the process and extend the enjoyment of the outcome. For fellow seasonal sufferers here are some pre-tested suggestions that have worked for me.

Bake cookies for a neighbor. (Choose a different culinary strategy if your neighbor happens to be a dentist.)
Simmer up a pot of soup for a shut-in (and save some for yourself). The chicken soup “myth” is actually true!
Find out about light visors to compensate for fewer hours of natural daylight. The one I use is Bio-Brite (www.biobrite.com)
Find an interactive blog site and post an opinion. Someone is reading responses.
Visit a resident of an assisted living facility. Everyone has a history; some are spellbinding.
Telephone a classmate you haven’t seen since high school. Have they lived their dreams?
Invite a sister/brother/cousin/friend to visit for a few days. (Specify length of stay.)
Write a Letter to the Editor of your hometown newspaper. Find a forum for your (printable) opinions.
Read some Ogden Nash poems.

This is only a partial list to get the creative juices flowing. Add more from your own experience. Pick one, mix with a dash of sunlight and let a smile break through.

Copyright 2008
www.lindalater.blogspot.com
Posted November 20, 2008

Exercise Evolution

2008-11-13T08:29:00.000-08:00

My exercise plans evolved in halts and starts through the years starting before the fitness revolution was a gleam in Jane Fonda’s eye. After graduation ended my high school sports programs, and feeling fidgety without regular exercise, I took up jogging.

While living near San Jose, California in my mid-thirties, my friend Judy and I decided to train together to prepare for the Bay to Breakers race, a 7.46 mile (12K) cross-San Francisco route from the eastern waterfront ending at the Pacific Ocean in the west. We trained for months at a local high school track, gradually extending our distance and endurance.

The event attracted about 7,000 runners that year with thousands more lining the route to cheer us. Even though we trained on a flat track, Judy and I finished in respectable time for amateur runners facing San Francisco’s daunting landscape. While many runners walked Hayes Street Hill, I am proud to say that Judy and I held to a jogging pace throughout. It may seem a modest achievement to more accomplished runners. But then challenges are relative and this one is the longest run I have ever tackled (or hope to).

The evolution of my personal plan of exercise is apparent in scanning the titles of my collection of fitness VCRs and DVDs starting with Jane Fonda and continuing with Callanetics, Kathy Smith, Richard Simmons, QiGong, Dancing Grannies and Kripalu Yoga, each of which offers it’s own special benefits. A few are catching dust; many find themselves back in favor as I search for variety in my current exercise plan.

Stay well as faithfully as you have stayed the course with us … and keep moving!

Copyright 2008
www.lindalater.blogspot.com
Posted November 13, 2008

Renovation Project

2008-11-07T07:58:00.000-08:00

As I become stronger, I am reclaiming bits of my former self by pondering how to rebuild my life and label the process: Recovery, Reconstruction, Remodeling, or Renovation.

Many think of my journey with cancer as a path to recovery. Recovery has come to bear connotations associated with overcoming addictions. My situation differs. I used to believe recovery was a passive process that occurs while lying in bed waiting until health magically returns to its former state.

Reconstruction connotes restoring as perfectly as possible to the previous condition. I emerge from the episode of illness the same as before the onset.

Remodeling constitutes reshaping the original using same or similar materials, a bit of polishing and some rearrangements resulting in a more convenient or agreeable environment.

Renovation differs from the above in not simply returning to a former condition, but rather by “making new” being actively involved in the process. This means thinking myself back to before this illness, examining each component of my persona for aptness to a new vision of “me” including “keepers” and discarding unwanted or unnecessary parts, re-creating each facet of my health, physical and spiritual being. The Katrina survivors of New Orleans’s 9th ward know a lot about this process.

One big “keeper” is my experience of your overwhelming support and expressions of caring concern that will be part of me always.

NOTE: Future blog postings will occur weekly on either Thursday or Friday unless events dictate an “extra edition.”

Copyright 2008
www.lindalater.blogspot.com
Posted November 7, 2008

Sleepy Head

2008-10-30T10:50:00.000-07:00

Poets have lauded sleep with fancy images and mythologized its restorative qualities. When sleep is elusive, it is worth whatever the soul is willing to pay to recapture it. Its gates cannot be breached, only persuaded to part briefly to admit the sleep-seeker for a limited sojourn.

To help reach this temporary nirvana I have successfully in the past taken herbal teas like Celestial Seasonings SleepyTime Extra. The ceremony of heating the water, pouring it over the tea bag and watching the steam rise inspires reflection and welcomes drowsiness, ushering me into sleep’s anteroom. My family doctor frowns on herbal remedies, citing negative interactions with other of my medications. He is a conservative guardian of my health, so I toe the line and seek alternative ways to encourage the companionship of sleep.

Most nights, sleep holds the gremlins at bay. When their presence becomes too overbearing, I topple over into vicious wakefulness, the gremlins plucking at the remnants of sleep.

My first defensive maneuver against the worry gremlins is to remind myself that little decided in the middle of the night has value after the sun rises. The fun house of Morpheus distorts reality so cunningly and subtly that I can’t rely on decisions or perceptions stumbled upon in the depths of the night. Any dream-thoughts that bear a hint of brilliance I scribble down on a notepad by my bed and re-evaluate in the cold light of morning.

The remembrance gremlins are more tenacious. Their carping reminds me of all the roads not taken, poor decisions and flat-out mistakes I have made throughout my life.

To close the gates on these persistent gremlins, I borrow from my yoga practice by focusing my awareness on the breath moving in and out of my lungs. The effect is like a cradle rocking me closer to restful sleep, a miraculous escape!

Until morning … sweet dreams!

Copyright 2008
www.lindalater.blogspot.com
Posted October 29, 2008

MUSC

2008-10-24T09:04:00.000-07:00

With our last visit to Charleston, South Carolina still fresh in our minds, we will try to give you a flavor of Medical University of South Carolina, the institution, and what it means to us to return every three months.

The Hollings Cancer Center is well-recognized nationally as a major cancer treatment center and especially for its expert head and neck oncology medical staff.
Basic reference information is at the website: http://hcc.musc.edu/ .

The best part of each visit is the people. The hospital staff greets us with genuine welcome. Most recognize our faces by now if not our names. The lab technicians draw my blood (seven vials full!) and bring me up to date with local goings-on, upcoming weather and how the River Dogs (Tampa Devil Rays’ minor league) are doing at their nearby arena.

The imaging lab technicians talk me through each scan with smiles as if this were their first day on the job; no monotones bred from hundreds of repetitions. They maintain caring eye contact, a gentle demeanor, an apology with each double dose of super-sized contrast liquid, and never a pinch with the dye injection.

The clinic staff is equally attentive and alert to any discomfort I may be feeling. One time I happened to mention that I was feeling nauseated. Within minutes they delivered an appropriate dose of a prescription medication along with a cup of water to drink it down. The doctor and his nursing assistant really listen, not only to our words but also to the tone of worry in our voices. They are never rushed; I feel as if they have no other patients to be seen that day. This is the doctor that caught the Deep Vein Thrombosis development back in August 2007 and called ahead to the Emergency Room so that they were ready for me when I arrived a few minutes later.

We are discovering a home community away from home!

Copyright 2008
www.lindalater.blogspot.com
Posted October 24, 2008

Better and Better

2008-10-17T08:02:00.000-07:00

I know I’m getting better because …

… I’m driving a car again … even alone. And better yet, occasionally even with Michael kibitzing from the passenger’s seat. Very few events in my life have the significance of this freedom reclaimed. I feel like a whole person again, a fine commentary on our society’s assumption of one person = one car. I’m grateful knowing that I can get myself to my own appointments, or can go off on my own for a latte and a good read or to meet a friend for a cuppa and a good chat. The burden of knowing that my needs or wishes have been diverting Michael from activities he would rather be doing in order to cart me around has overshadowed my days, but not nearly as much as I imagine it has curtailed Michael’s planning and doing for his own life.

… I have gained weight. Partly because of side effects of a new medicine, partly because the terrible tastes in my mouth have abated. Currently I am super sensitive to pepper; eating something with pepper in it, together with the taste aberration, leaves me panting and my mouth tingling. Compared with a year ago, though, it is quite tolerable.

… I wear makeup more often, dress more carefully, trim my nails and have my hairdo shaped more frequently. I like the way I look now. Apparently others do also judging by the number of genuine compliments that accompany hugs of greeting.

… I have attended to my need for exercise and have come to enjoy my daily walks as much for the elevated heart rate as for the endorphin rush that plumps up my ego and keeps me motivated to continue regardless of weather or lassitude.

… I have been true to your faith in me through the writing of this blog and posting it regularly to keep company with each of you. Thank you for joining me on this incredible journey.

Copyright 2008
www.lindalater.blogspot.com
Posted October 17, 2008

UNREMARKABLE

2008-10-13T12:50:00.000-07:00

Love that word!

We just returned from the Medical University of South Carolina Hollings Cancer Center in Charleston where good news awaited our arrival this morning.The CT scans from last Thursday (thyroid) and Friday (Chest, Abdomen and Pelvis) have been interpreted and compared with those taken in July to determine what changes have taken place.

The changes are small this time, but they also show a distinct improvement, meaning a shrinking tumor. This is the first time the word improvement has been used since we began participation in the study. All other observations are labeled "unremarkable." We find that exhilarating!

The next finding will be the blood work results, hopefully available by the end of the week. These numbers will reveal the cancer activity on a cellular level. We will post these results as soon as we have them.

Thank you for your ongoing support and loving caring.

Copyright 2008
www.lindalater.blogspot.com
Posted October 13, 2008

Going to Charleston

2008-10-04T17:54:00.000-07:00

Last year, we tried three courses of treatment that failed to halt the growth of cancer tumors in my liver. As Autumn approached, our oncologist learned that a new drug in clinical trials was having above average positive results in treating persons with the type of cancer I have. The drug is Zactima, made by AstraZeneca. The double blind protocol assures that no one involved in the study knows whether the participant receives a placebo or the actual drug. The study site is in Charleston, South Carolina.

Here are elements of the decision:
1 - Do we travel to Charleston, a round trip of 850 miles, for an initial interview to see if I qualify?
2 - If I qualify, are we willing to be there for seven appointments in the first three months?
3 - How will we know if I get the placebo or the Zactima? If I get the placebo, I will have received no treatment for three months while the cancer tumors grow unchecked.
4 - If I receive the Zactima, are we willing to make regular return visits every 3 months for check ups and to receive another supply of the oral one-a-day tablets?
5 - Are we willing to give the time involved? Driving requires a two day trip each way.
6 - How about other typical travel expenses: meals, lodging, transportation?
7 - Will Michael be willing to take on the additional tasks associated with such a strict schedule?

Each element required thoughtful consideration and discussion with each other about the further implications of each decision. Here’s what we decided each point and the results of each decision.
1 – Yes. A preliminary telephone screening was hopeful. Other than the cancer, I have a long history of robust health. The risk of being turned down seemed minimal.
2 – Difficult, but do-able. Much tiring travel and a long time away from the comforts of home, family and friends for support. Telephones and email minimized the isolation we felt.
3 – A risk, but a moderate one. One of the three months is necessary anyway to “wash out” traces of all previous medications before I could start the trial drug.
4 – Yes. If we see positive results in blood work lab values, imaging to compare the status of the tumors versus the previous images, and the appearance of expected side effects the contribution to improved health trumps all other considerations.
5 – Yes. In the event, we chose to travel by Amtrak from Richmond. The costs averaged out to be almost the same, and we saved two full days of travel time on each trip.
6 – Some are reimbursed. That helps.
7 – He has been by my side throughout this journey. He understands what is needed and says “Bring it on!”

When we say “Next week we are going to Charleston,” we have paved the way with all these decisions and look forward to returning on that yellow brick road of hope and glad tidings.

Copyright 2008
www.lindalater.blogspot.com
Posted October 4, 2008

Circling, Waiting to Land

2008-09-29T14:22:00.000-07:00

In ten days, we leave for the next round of imaging, blood work and physical exams at MUSC in Charleston, South Carolina. I live in limbo, anticipating improvement, dreading reversal. Doubts most often plague me during these pre-trip days. Subjectively, I feel better now than I did prior to the last trip in July, almost too well. I ask myself: Do I really feel better, or is what I am feeling merely hope coloring my perceptions. For the most part, the numbers on the lab values show favorable trends to which I credit belief that a return to health is underway.

The pace of treatment has slowed to a steady repetition of the same pattern of treatment: Take a Zactima tablet once a day to treat the cancer lesions in my liver; take Warfarin (the generic version of Coumadin) to treat Deep Vein Thrombosis, a side condition often brought on by cancer.

One by one we find ways to reduce the side effects of chemotherapy and incorporate them into my treatment plan. The collective effect of these minute changes becomes the reality of sustained improvement. I see a favorable progression of hope to belief to reality taking shape, and it encourages me as I face the uncertainty preceding another round of testing.

As I wait for action, I am set on edge as by a continuous screech of fingernails on a blackboard. Distracted and unable to concentrate, I feel like Elizabeth Taylor’s portrayal of “Maggie the Cat” in Tennessee Williams’ film classic Cat on a Hot Tin Roof without the solace of playing opposite Paul Newman.

Yours from Fantasy Land.

Copyright 2008
www.lindalater.blogspot.com
Posted September 29, 2008

Crossing the Threshold: Growing Up

2008-09-26T09:09:00.000-07:00

On D-Day (October 26, 2006) the doctor diagnosed my collection of complaints as cancer. I had crossed the threshold. Looking back, I now recognize the true significance of that event; though the truth has been slow in dawning. No thunderbolt tore the skies; no scales fell from my eyes; no sudden clarifying vision overtook me. I had to live the consequences before I could recognize them.

The passage was rather like emerging from adolescence and realizing suddenly that adulthood was upon me. I was disoriented, with few reference points. I still looked and sounded the same. But inside something had shifted; my mind had stepped slightly to one side while my body remained where it was.

The old habits of thinking, of expectations, the routine that carried me through the day had dissolved, and no amount of clutching could stanch the dribbling away of the familiar. It is rather like crossing a stream on stepping stones, losing sight midway, leaving only the mind’s eye to reconstruct the pathway to safety.

Gradually I became aware of subconsciously reframing my definition of adulthood, given a new set of circumstances. I dropped old ways that were no longer useful to me, and began to investigate ideas and practices that had long been dormant or unknown to me. For example, humor. Formerly I thought of it as a weapon, aimed by me or at me. Now I more often think of it as a hot air balloon, easing life’s burdens especially when I climb into the basket and light the burner. With each reinterpretation of life’s building blocks, I perceive others more sympathetically, and feel more human.

Have I grown up yet? No, but I like the path I’m traveling. Please join me in this journey of discovery.

Copyright 2008
www.lindalater.blogspot.com
Posted: September 26, 2008

Sampson Syndrome

2008-09-23T15:32:00.000-07:00

Throughout my youth, Dad-built gymnasiums appeared in our backyards shortly after each family move: trapeze, swing, slide and horizontal bar. They kept us kids at home, occupied and growing up with healthy habits. Even the neighborhood boys admired the Chapman girls’ athleticism. Enduring physical strength was the legacy for our young growing bodies.

As a result, my muscle memory still hungers for satiation. It goads me into regular, physically challenging activities. My body doesn’t feel comfortable until it has achieved a balance between activity and rest.

For this gift, I thank my father for providing and my mother for fostering an active, healthy attitude about sports. I draw on this memory daily to help me rebuild the strength I lack right now.

From the early days of this illness, strength has been a crucial indicator of health. My gauge is the Lift Own Weight (LOW) scale. This came about because, being sailors, we plan Man Overboard Recovery routines. One of them, for able persons, is to bring the boat alongside so the individual can climb aboard using a ladder. During a rehearsal ashore, I realized that I could not Lift my Own Weight to make such a climb. My LOW number was ten, scaling zero as “perfectly able” and 10 as “totally unable.” That frightened me; a patina of anxiety overlay each sailing excursion.

Now, two years later, I happily report that I have regained enough strength to lift 40% of my body weight. I have yet to figure out which combination of body parts will allow me to hoist the remaining 60% of me aboard. Ahoy to progress!

Thank you for your support of returning health.

Copyright 2008
www.lindalater.blogspot.com
Posted: September 23, 2008

Weight

2008-09-19T06:36:00.000-07:00

For most persons with cancer, weight is a critical issue. Every doctor’s visit starts with the routine of “checking vitals” to spot trends (up, down or stable) as early as possible and start appropriate treatment.

A year ago, I weighed in at 90 pounds after having lost 24% of my pre-illness weight of 118 pounds. That was the lowest point to date. My normally muscular legs couldn’t even be called slender. They were stringy. Twenty-eight pounds on a person of my size (just over 4 feet 11 inches) is a ton of chubbiness!

Very soon thereafter, however, I climbed back up to 95 pounds with the assistance of an ice cream diet recommended by my doctor. (Such a hardship!) After a few months of adding several ounces a day, I now hover in the vicinity of 100 pounds. My fervent desire is to stay there permanently. My only regret is having done it with the unwelcome assistance of a very scary illness.

The gremlin of thwarted goals, however, has reared its ugly head. A new medication, begun a week ago to treat side effects of the chemotherapy, has its own side effect of weight gain, and today, the first extra pound appeared. A close watch now will tell me whether or not I have slid back into the old habit of see-sawing weight. I welcome this if it signals a return to health.

Any breakthrough inspirations on managing the cold war of weight management will be bulletined out at once. Stay tuned.

Copyright 2008
www.lindalater.blogspot.com
Posted September 19, 2008

To Sleep, Perchance to Dream

2008-09-16T07:12:00.000-07:00

Dreams have always been a form of entertainment for me, like watching movies in the ultimate home theater. The impact of a film, can be measured by the degree to which viewers are drawn into the story. Think “Psycho”, for example, and the shower scene immediately comes to mind. One dream frightened me so when I was a child that I shiver now when I recall it. I can still clearly see the awful terror on the face of a Pilgrim girl, having dipped a bucket of water from the common well, being chased up a hill by a loud, terrifying tribe of angry Indians brandishing tomahawks.

Before now, I have had few dreams of paralyzing fright. The usual assortment of mildly disturbing dreams have played on my mind’s marquee: the embarrassment of appearing naked in public, or the anxiety of being unable to deliver a critical message. Occasionally I have awakened myself to laughter caused by the antics of my mind’s imagination. Lately, however, I have begun to have dreams of violence in which I am threatened with bodily harm by knife-wielding assailants or lurking shadowy figures.

My personal film producer has been working double time over recent months concocting situations that carry me to the extremes of fear. One recurring theme places me on the roof of a ten story building, crouched on slate with my toes desperately gripping the tiles closest to the gutter, perspective magnifying the height and paralyzed with fear. I cry out in terror, awakening myself before the predicament becomes more critical or resolves itself. Michael gives me a gentle shake and a few comforting pats, and I return to a sound sleep.

I would rather awake laughing, so these days I more often read humorous books before sleeping rather then the absorbing mysteries I usually favor.

Sweet dreams!

Copyright 2008
www.lindalater.blogspot.com
Posted September 16, 2008

Walking

2008-09-11T07:22:00.000-07:00

“Walking is good for you.” All my life I have heard that ad nauseum. Repetition, however, has not deterred me from periodically slipping away from the habit. The worst part about walking is getting started again after a lapse.

If I miss a day or, worse yet, two or three days, the guilt begins to pile up, making it even more difficult to get back on track. When I finally do, the payoff is relief from guilt and an intense rush of virtue that somehow brings everything back into balance. Walking is great exercise, but for me the emotional benefits, in terms of self-regard, outweigh the physical benefits.

Time of day for walking is important; mine is the morning. Aside from waking and taking my medications, walking is the next highest priority of my daily “To Do.” The only way I can insure that it happens is to walk before anything else intrudes. All else waits.

If Michael joins me, as he often does, the walk time is spent in amiable companionship: comfortable silences interspersed with long and short term plans, items for the grocery list, menus, the calendar, and current events. It is a challenge after all these years to come up with entertaining topics to keep the conversation going.

We walk 1.4 miles total, usually in about 30 minutes. If the weather is inclement, we hop into the car and head for the YMCA treadmill machines. The environment there isn’t as scenic as our local walk but it keeps guilt at bay with an unbroken string of walking days.

Remember: “Walking is good for you!”

Copyright 2008
www.lindalater.blogspot.com
Posted September 11, 2008

Progress in Perspective

2008-09-07T05:42:00.000-07:00

Progress is blindingly fast when viewed in a nano-blink of a geological eye. But, lived day to day, progress seems interminably slow, especially when looking for change. Looking back from now, I am appalled to realize how sick I was in the final days of 2006 without being aware of it at the time. The illness was gaining momentum, entrenching itself more firmly while we searched for an understanding of what was happening and what to do about it. We worried about not having enough information to decide whether or not to worry!

Many factors blocked what we defined as “progress” toward therapeutic interventions. The death of my oncologist with attendant grief and memorial events, reassignment to another oncologist, seasonal delays due to holiday time off for medical professionals critical to the diagnostic process and, finally, the need to enlist a second opinion to clarify the diagnosis. There was no foot-dragging, just unavoidable delay due to immutable obstacles.

Now my status is “stable.” The changes in the most recent 6 month period marked by three measures are minimal as measured by imaging and palpation of my liver. CEA blood analyses continue to decline (good) and Calcitonin, equivocal at best, is actually fluctuating within a fairly narrow range, trending downward (also good). These are hard won positive benchmarks. I should appreciate them more. But being a creature more prone to action that reflection, it seems to me the improvements are taking an inordinately long time to show themselves. I must tone down my “hare” instincts and take to heart the lessons in patience and persistence demonstrated by Aesop’s turtle barely a geological blink ago in ancient Greece.

I’m counting on you for turtle company!

Copyright 2008
www.lindalater.blogspot.com
September 7, 2008

Same Time Next Quarter

2008-09-04T11:27:00.000-07:00

Our oncologist greeted us yesterday for our 3-month visit with polite handshakes and an open, receptive manner. His first words are always: “How do you feel?” The inquiry probes well beyond a polite cliché. He really wants to know. And so we launch into a recital of observations meant to track changes between appointments.

We read from our log, in which we record symptoms, side effects and medications in hopes of correlating one with another to get a tighter grip on effective treatment. So far, the observed changes don’t track with any change in medication or behavior. Symptoms waft into and out of my awareness, some with punch, and others with subtle shifts toward or away from discomfort. Nausea, for example, is the most creative and persistent of all side effects, sometimes hanging around for hours or days and other times departing as quickly as five minutes after manifesting itself.

Both oncologist and nurse diligently searched for something to counteract nausea, prescription or not, that would not interfere with other medications I take. It is so constantly with me that I am almost convinced it is “normal” at least for the course of this illness. Its presence takes the edge off my pleasure with life, living and friends and erodes a positive attitude, a vital component in fighting the challenge of this illness.

A liver and thyroid palpation complete the visit by checking the size and location of tumors shown on the most recent CT scans. When asked what the palpation indicated, the doctor shrugged like someone saying “What can I say? Nothing new to report.” This confirms the findings of the imaging, that is, conditions are stable. The MUSC head and neck oncologist found exactly the same condition and expressed his reaction with an identical gesture. How encouraging to have consensus!

Thank you for being with us.

Copyright 2008
www.lindalater.blogspot.com
Posted: September 4, 2008

Segue to Blog

2008-09-01T12:39:00.000-07:00

November, 2006. The liver biopsy procedure was finished in less than 45 minutes. With gritted teeth we waited the promised 3-4 days; a week later we still had heard nothing. The reply, when it arrived, was ambiguous: metastatic carcinoma with neuro-endocrine features and an unknown primary, the source of the cancerous cells. Another two months would pass before enough diagnostic clues accumulated to suggest a treatment plan.

Meanwhile, we kept our own counsel and awaited more accurate information or, at the very least, an informed prognosis. Withholding news of this magnitude was agonizing. We yearned for, and needed, the support of loved ones but felt we could not saddle them with the weight of the news without also passing along information, however tenuous, that would help them understand what we were going through and faced in the future. After six weeks all we had learned was: I have cancer but we don’t know what kind or the source of the malignant cells spewing throughout my body. Imagine a general receiving the message to attack without an identified enemy or a direction in which to aim weapons!

With Thanksgiving looming and a family trip scheduled, we were obligated to notify the family. The task was daunting, and the prospect of repeating the devastating news over and over was exhausting even before beginning. Starting a blog seemed the most efficient means, staying in touch while preserving our resources for the enormous task of self-education ahead.

At this point, the narrative is taken up by the November 19, 2006 blog posting. It was quite a roller coaster ride before finding a measure of stability with the Astra-Zeneca Zactima experimental drug, started August 2007. Your support has been invaluable in sustaining our spirits, and a positive outlook does indeed make the medicine work better, just like our parents told us.

Copyright 2008
www.lindalater.blogspot.com
Posted: September 1, 2008

Through the Diagnostic Wringer

2008-08-30T08:10:00.000-07:00

The presence of cancer cannot be verified except by biopsy, a microscopic look at cancerous cells taken from the suspicious tumor. Any opinions prior to that analysis are merely suppositions. To collect a sample tissue from a tumor on my liver, the procedure applied was an “UltraSound guided needle biopsy,” a minimally invasive surgical procedure, conducted in early November, 2006.

The surgeon introduced himself, and, not waiting for my response, leapt into legally required disclosures for which I had already signed an agreement printed in three point type. First item he mentioned was that the procedure he was about to perform could result in my death. He then recited a lengthy list of successively less dire possibilities until he ran out of doom and gloom.

With a considerably subdued patient and having finished his legal duty to the hospital and his practice, he brought my insides into focus on the monitor. How many of us get a chance to see our insides while they are functioning? I wasn’t going to miss this show especially since the surgeon had pointed out that I might not survive, so I declined a sedative.

Surgeon, pathologist, nurse anesthetist, and UltraSound technician, each armed with specialized equipment, squeezed around me in a closet-sized room. We watched the careful progress of the needle through my skin, into my liver and positioned to suck up a tissue sample from the tumor. The surgeon passed the first extraction over to the pathologist for approval. Thumbs down; a second pass at my liver produced a sample that satisfied him.

Next: segue to treatment.

Copyright 2008
www.lindalater.blogspot.com
Posted August 30, 2008

Diagnostic Whirlwind

2008-08-25T11:27:00.000-07:00

This blog was born to keep family and friends informed of new developments in diagnosis and treatment of this cancer. Now, almost two years later we return to look at that time to better understand the flurry of events and emotions between the first whisperings of illness and November 19, 2006, the date we started the postings.

Our family doctor reviewed my complaints in early October: diarrhea, fatigue and leg pain. The series of tests he ordered would help us, he said, eliminate possibilities and zero in on a single likelihood. The ultra sound was to investigate complaints of persistent leg pain over a long period. It came up clean, no anomalies. Next, a chest CT to check the condition of my lungs. The results of this suggested a CT of the abdomen/pelvic area. Next was an extensive array of blood analyses. After a thorough review, the doctor called me into his office three weeks later on October 26, 2006 at 4:30pm. I went alone. The first words out of his mouth: “The results of these tests indicate cancer.”

That is what I appreciate so much about this doctor. He is unfailingly direct, leaving no room for misunderstanding or misinterpretation. He showed me the CT scan which revealed a 1” diameter tumor on my pancreas and numerous shadows showing more tumors piercing the smooth grain of my liver like potholes in macadam. My reaction split at once: I set aside the impact of his words in order to clearly hear the information. I gazed at the shadows on my liver, willing them to disappear, yearning for a rewind and revision of the scene, wanting to defer acceptance just a little longer.

Next: Refining the diagnosis.

Copyright 2008
www.lindalater.blogspot.com
Posted August 25, 2008

On the Brink

2008-08-21T06:18:00.000-07:00

August 2006: Two weeks in New York City: a dream vacation made possible by a house swap. We walked the riverfront each morning, feasted on ethnic delicacies, and stoked ourselves on the unique flavors and aromas of New York. We shopped the farmers’ market, applauded park concerts and reveled in the end-of-summer giddiness before returning to the “real world.” It was a magic time.

September 8, 2006 we drove from The City to visit friends and attend two reunions. This day marked the first appearance of a common symptom of this illness: diarrhea.

During the next three weeks, I developed skills I never guessed I would have to learn. Each stop tested my ability to identify with all due speed the location of a public rest room. Courtesy gave way to urgency in ladies’ room lines. Hasty excuses presaged a flight to a loo. There was no time for witty euphemisms or demure excuses. My body felt dissociated, acting independently without forethought, and failing to give me sufficient advance notice to gracefully tend to excruciatingly private urgencies.

During the remainder of the trip, other symptoms appeared. Daily walks took longer to cover the same distance. My ankles and feet became chubby with edema. Any sparkle I might have brought to the events dimmed, replaced by anxiety.

Back home at last, I delayed calling for a doctor’s appointment. A tinge of dread replaced the uneasiness I had been feeling in July. Then the pictures from the two reunions began to arrive and I saw myself not as in a mirror but as others saw me. I was stunned: “That is a sick woman!” my mind shrieked. I picked up the telephone immediately and arranged to see my doctor the very next day.

Next time: Diagnostic tests.

Copyright 2008
www.lindalater.blogspot.com
Posted August 21, 2008

Analyze This *

2008-08-17T06:18:00.000-07:00

Bloodwork results from the last trip to Charleston are mixed. CEA measures my body’s response to general cancer cell activity. That is down 23% from the last measure in April. (Down is good.) Calcitonin measures the activity level of cancer cells specific to the thyroid. Now it is up 8% versus April’s measure. (Up is not good; we want it to go down.)

The last seven months summarized:

2-4-08 vs 12-27-07 CEA ↓15% Calcitonin ↑11%

3-28-08 vs 2-4-08 CEA ↑ 13% Calcitonin ↓ 32%

4-25-08 vs 1-31-08 CEA ↓ 12% Calcitonin ↓ 50%

7-21-08 vs 4-25-08 CEA ↓ 23% Calcitonin ↑ 8%

Analysis: CEA is trending downward. Results fall within a range of 11 percentage points for each of the last three periods framed by four measurements over a span of seven months. Three (75%) were down.

Calcitonin, conversely, is moving laterally: two up, two down in a range of 42 points. The two measures showing the greatest change (32 and 50%) are both down, a total of 82 percentage points during a six month period. By comparison, an 8% rise in the most recent three month measure is only 10% of the previous 6 month decline. This view puts the current increase relative to the historic changes in perspective. The momentum of the trend is still favorable despite a small “adjustment” as the Wall Street analysts are fond of saying in a different context.

Applying financial analysis tools to interpret results of a blood test may be a stretch. My training in financial analysis assists (warps, some might say) me to look at an imminently threatening situation more objectively. The interpretation: the illness continues in retreat.

Let’s cheer retreat and focus on continued positive trends! Thank you for your invaluable support and good cheer.

*Copyright 1999 Warner Bros.

Copyright 2008
www.lindalater.blogspot.com
Posted August 17, 2008

This is Retirement ! (?)

2008-08-14T05:44:00.000-07:00

Late Summer, 2006. My thoughts hovered over a lifetime “to do” list reviewing what I wanted to check off before I checked out. We had sold our business importing feathering and folding sailboat propellers from Europe a few months earlier. (Check one off the list!) By July we had returned from an extended cruise on Chesapeake Bay in our own sailboat. (Check another off the list!)

We were preparing for a six-week auto tour of our favorite haunts in New England visiting family and friends and attending two reunions: one gathered my parachuting buddies from 40 years earlier and another celebrated the 50th (!) anniversary of high school graduation. It was an exciting, happy time, not one to brood about the fragility of life and its ultimate destination.

And yet, I felt rather than heard a distant bass vibration sifting through to my bones leaving a trace of uneasiness. I brushed the sensation aside.

Being an intensely visual person, I often translate feelings into mental images, sometimes abstract, other times realistic. They reside with me for a time, then dissolve to reappear later or never again. As the summer wore on, an image was evolving, strong and implacable. Negative thoughts whirled, melding at the center of a vortex into an immovable form, a stainless steel column at the core of my being. Worn thoughts clustered, coalescing into an unassailable object as if compressing all the dust, out of place objects and dirty windows in a fury of house cleaning. (Freud would have a field day with this!)

Carrying this image around in my head was exhausting, a burden added to my flagging energies. Pre-diagnosis recollections continue in future blogs.

Keep well, dear ones. Guard your health fiercely!

Copyright 2008
www.lindalater.blogspot.com
Posted: August 14, 2008

Early Days

2008-08-10T15:25:00.000-07:00

Sometimes delaying reflection brings events into sharper focus and promotes a clearer understanding of their meaning in the context of our lives. As the approach of the second anniversary of survival nears, events at the onset of this illness have been on my mind. I can identify stirrings of awareness of something seriously wrong as early as three months prior to Diagnosis Day (October 26, 2006).

For example, in July 2006 I found myself telling Michael, out of the blue in a lull in dinner preparations that I hoped he would remarry after my death, surprising myself as well as him. Where did that come from? We discussed it briefly, mostly along the lines of “what are you thinking of?” and “what brought this up now?”

In the months that followed other similar non-sequiturs burst without bidding from my lips. There had been no recent deaths of family or close friends that might cause me to reflect on my mortality. No physical cues appeared to alert me that illness lurked in the near future. At that time I felt the same as ever.

I tried to puzzle out the meaning of these thoughts. They didn’t alarm me but their appearance gave me a vague sense of uneasiness. I was curious about why they popped up. Looking back, some might say they revealed unconscious premonitions. Perhaps it was simply a natural cluster of thoughts about “putting my affairs in order” appropriate to that time of my life. At no time did I share these thoughts with Michael. More about pre-diagnosis days in a future blog.

We are grateful to have had these two years to find an effective chemotherapy treatment that has extended my life and to all of you who have so actively given your time and prayers on our behalf.

Copyright 2008
www.lindalater.blogspot.com
Posted: August 10, 2008

Credibility Gap

2008-08-08T13:03:00.000-07:00

You look great! they say. Or on the telephone: You sound wonderful! So strong and healthy! I don’t argue because hearing that gives me a lift, an especially beneficial remedy. The surprise in their voices reveals their expectation of seeing an emaciated, tottering, critically ill patient, the stereotype of a person with cancer. Or, it may be due to a comparison with a remembered version of me earlier in this illness. Then I wonder: How did I sound or look before?

The fact is that I am feeling somewhat better, though not as much better as I would like to feel, nor as well as others perceive. Right now I feel fundamentally stronger than I did a year ago, while simultaneously experiencing a wave of momentarily (meaning days or weeks) more intense side effects or symptoms, especially nausea.

We briefly glimpsed what feeling better means a few months ago when I was experiencing exuberant strength and gleeful good spirits. I immediately started planning a Fall full of enticing travel plans which we have had to cancel one by one as strength and spirit have eroded. A small step back even as the imaging and bloodwork numbers improve.

So a credibility gap has developed between appearance and reality. One reason is the carryover effect of my previous persona. I have spent a goodly portion of my life in public “on stage” as a presenter and a marketing person, promoting the best aspects of a product or service as well as myself. Furthermore, I am an unabashed Pollyanna, always looking for the positive in any situation even in the shadow of a daunting reality.

Here’s to bringing reality closer to perception! Thank you for being here and living this time with us.

Copyright 2008
www.lindalater.blogspot.com
Posted: August 8, 2008

Linda by the Numbers

2008-08-05T05:55:00.000-07:00

Last Fall, we developed a rating scale to rank the relative impact of the side effects of the Zactima chemotherapy trial (see blog October 28, 2007). A subjective evaluation of each category would provide a base for future comparisons. I ranked each side effect/symptom on a scale of 1-10 (10 is most severe, 1 is hardly noticeable). Now, 10 months later, I have again ranked each side effect/symptom according to how I feel now. Here are the results, showing changes up or down.

NAUSEA=5 (↑ 1)
FATIGUE=5 (↑ 2)
DIARRHEA=8 (↑ 1)
RASH=2 (↓ 3)
ANXIETY=4 (↑ 1)
DEPRESSION=4 (↑ 2)
EDEMA=2 (↓ 1)
SKIN SENSITIVITY=6 (extreme dryness has replaced bruising) (↑ 1)
SIGNATURE=2 (↔)

Disclaimer: These are subjective evaluations based purely on my “sense” of my status compared with a theoretical personal “norm.” I certainly wouldn’t expect “norm” to describe everyone equally. Precise category definitions exist in my head. The abbreviated definitions above are self-evident. The descriptive strength of this profile is that the subject remains the same; the weakness is that the state of mind of the subject may vary from one evaluation to the next leading to non-comparable results.

This is only the roughest of profiles meant to give me a semblance of progress or lack thereof in the course of an illness that defies definition and confounds prognosis. In my experience, the illness appears to be “custom designed” for each individual, making it difficult to compare notes with others diagnosed similarly or even with professionals having broad experience.

Until next time … yours, as ever.

Copyright 2008
www.lindalater.blogspot.com
Posted: August 5, 2008

Crossing the Threshold: Goal Setting

2008-08-02T11:32:00.000-07:00

This series of musings focuses on my experience of learning that I have an incurable illness and the significant ways in which that knowledge irreversibly changed my world view and actions. The change was instantaneous (Diagnosis Day October 26, 2006), while my awareness of the implications has been slow to evolve. An occasional epiphany helps to clarify my current view and further an altered understanding of myself.

All my life I have been an inveterate goal-setter, working in reverse linear, that is, to identify a goal and work backward, mapping a route to fulfillment. Ultimately, I find myself at the starting point: what can I do to take the first step now. In my post-diagnosis world, I am far slower to set goals. I ask myself: Can I really count on having the energy to carry me through to completion? Are others counting on me to meet my commitment? So I have cut back on the number of goals I have at any given moment and concentrate only on the quality of those I commit to. That way, I unburden myself of half-hearted efforts and savor the true delight of a worthwhile accomplishment.

Some goals may seem trivial, disguising their true value. For example, my “Therapy Afghan,” which I crocheted during a stressful period of my life bringing me great comfort and calm. With deliberation and care, I selected the mohair yarn, warm, strong and exceedingly light, in my favorite colors. For months I experimented until evolving a pattern that appealed to me. It took several starts and a few unravelings before, two years later, I finished. A bonus was the loving companionship of our cat Felix who blissed out on the luxurious mohair whenever I took up my yarn and hook.

Other musings will follow as they present themselves to me. Thank you for being with us; your support is our strength and comfort.

Copyright 2008
www.lindalater.blogspot.com
Posted: August 2, 2008

The Curious Case of a List to Port

2008-07-28T16:39:00.000-07:00

Last Fall curious symptoms began to present themselves. I found myself unable to maintain a normal posture, either seated or standing. Rather, I slumped to my left, somewhat like a sailor’s list to port. The shift occurred so slowly that I wasn’t aware of it until I suddenly discovered my left shoulder drooping to the left and forward, my left elbow jabbing into my belly.

Other times this syndrome presented itself as my being unable to walk a straight line, but drifting, crab-like, to my left. (Without even a whiff of alcohol to blame the unsteadiness on!) To support myself in an upright, sitting posture required an intense focus and effort, something one doesn’t normally even have to pay attention to.

These symptoms sound to me like lingering effects of a stroke, but no other evidence presented itself to confirm such a diagnosis. And so, with more urgent and critical issues to address, this condition remained unidentified and untreated. It is hard to know if this is a weird manifestation of cancer or something else entirely. Like so many other symptoms and side effects I’ve experienced during the course of this illness, the appearances are ephemeral with minimal disability.

Recently, Michael and I were out walking. He trailed behind a few steps and noticed that I was walking a straight line and that my posture no longer tilted to the left. This must be the fabled straight and narrow path! Again, the improvement was so gradual that I was barely aware of it.

A medical mystery remains unresolved. We are inching forward towards “better” slowly but surely. Thanks for the companionship on this, occasionally weird, journey.

Copyright 2008
www.lindalater.blogspot.com
Posted July 28, 2008

Food

2008-07-24T17:33:00.000-07:00

The aroma of salmon on the grill tickles my nose, my mouth waters in anticipation of a fine dinner to come. When served, my eyes hungrily take in the moist pinkness striped by a hot grill, the flakiness revealed as I separate the first bite from the serving. Then I close my lips over my fork and tenderly munch on the succulent treat.

But the salmon taste I remember so well is not there. Replacing it is a peculiar flavor bearing only a distant relationship to what I expected seconds earlier. A blanket of disappointment settles over me as anticipation gives way to the startling reality of yet another unexpected taste.

These sensory tricks began shortly after Diagnosis Day. My “mouth tastes” change from time to time without correlation to other changes such as medication, amount of sleep or diet changes. An early “mouth taste” was salt. Food and drink did not dissipate or mask the extreme saltiness of everything I ate. This effect gradually disappeared, to be replaced with another “flavor.” Several cycles of taste distortion have come and gone since then, each one unique.

Previously, food was a major pleasure for me. My appetite was robust, my imagination fired by recollections of superb meals. Now the idea of food is often repellant, or triggers nausea. Nevertheless, I eat more, searching for a flavor that matches my expectations and memory. To date, I have avoided weight gain. As food begins to taste better, that may become a problem, but for now, the search continues.

Until next time, bon appétit!

Copyright 2008
www.lindalater.blogpost.com
Posted July 24, 2008

Sweet Words

2008-07-21T15:07:00.000-07:00

Our oncologist here at the Medical University of South Carolina in Charleston examined me today and read the radiologists' reports of the CT scans taken last Thursday of my neck and Friday of my chest, abdomen and pelvis. He compared these with the CTs taken of the same areas on April 24 and 25,2008 and finds "virtually no change."

Specifically: CT Neck: The radiologists are tracking four lesions in four different locations in my thyroid. All are unchanged since April's images of the same areas. In sum, the neck CT shows "no evidence of disease progression." HOORAY!

CT Chest: A substernal anomaly noted on previous CT scans has small adjustments in size, essentially remaining "stable." HOORAY!!

CT Abdomen (Liver protocol): "Multiple hepatic metastases without significant interval change." Other organs reviewed are normal, unremarkable and without abnormalities; no lymphoadenopathy, no vascular abnormalities; no bony lesions. HOORAY!!!

CT Pelvis: "No evidence of metastatic disease to the pelvis." HOORAY!!!!

And let us not forget the human aspect of this visit. A palpation by the oncologist of my liver was found to be normal. Another HOORAY!!!!!

I love those sweet words: unchanged, unremarkable, stable, no evidence, normal. Other than that noted above, all the rest of my innards are boring, thanks to all your prayers and positive messages of wellbeing. I'll stick with boring. HOORAY!!!!!

Copyright 2008
www.lindalater.blogspot.com
Posted July 21, 2008

Instant Old

2008-07-17T14:31:00.000-07:00

Overnight, I became old. A year and a half ago, I learned that the persistent symptoms I was having were actually an advanced case of cancer. After considerable pondering, I came to the view that I had acquired a surrogate to take the blame for the gradual appearance of minor infirmities suspiciously like those I had observed among the previous generation as they aged.

Very convenient to have a serious illness to cloak the signals of the aging process. Take forgetfulness (please!). This side effect of some medications is also a sign of advancing age. Note the participle which obscures the state of the process. i.e.: "--ing" indicating an unidentifiable stage of progress. I could have written "advanced," a state closer to the end of the process. But I assure you, I have a long way to go before achieving that distinction!

Needing more sleep is commonly considered another sign of "aging," e.g. early to bed, or daytime napping. My claim is that the ravages of a severe illness steals away my endurance. I consider sleep a form of treatment, not a sign of "aging," and therefore I indulge myself.

Shaky, wobbly handwriting is another manifestation of aging, one I noticed especially in my grandmother's letters. These days, evidence of this is harder to find, what with emails and instant messaging so universally used for communication and so optimally legible. Now I use my signature as a key indicator of the status of this illness, swinging from spiked, awkward letters during peaks of illness to free-flowing, vigorous characters when I'm feeling better. A diagnostic aid, surely NOT aging!

The question boils down to this: Would I trade a symptom of illness for a milepost of my journey through life? You bet! The signs of aging are proof positive of the continued existence of life. I think I've just talked myself into embracing aging and abandoning symptoms of illness as a validation of my drive to fully realize the remainder of my life.

Join me in an enlightened salute: Le chaim!

Copyright 2008
www.lindalater.blogspot.com
Posted July 17, 2008

Jitters

2008-07-14T07:55:00.000-07:00

With fingers drumming, I wait. Next imaging and blood tests are scheduled in Charleston, South Carolina for Thursday, Friday and the following Monday. Tension builds daily.

I become jittery: restless, distracted. Not fully engaged with what I’m doing, I repeat myself. I initiate a task only to realize that I had finished it earlier. My lists are my salvation. Remembering to cross “done” items off when completed is another memory hurdle.

Repetition plagues my conversation. Ever-patient family and friends disregard these lapses, a true sign of love and caring. Telephonic customer service personnel attend to my needs professionally without impatient sighs or expressing exasperation with an audio equivalent of rolling their eyes.

Tuning out of conversation is another distraction. I appear to be listening attentively until someone says “So what do you think of that?” and I haven’t the faintest idea of what I should be forming an opinion. My mind is preoccupied. Tension sneaks up on me, insidiously blocking awareness of the present. My mind must be napping while my body carries on, half dozing.

The most taxing “jitter” is what I call sleeping “uptight.” I awake to discover my muscles stiff with tension, my fists clenched. How can anyone sleep that way?!

Time to renew meditation, calm my mind, slow responses and focus on resolving the turmoil of ambiguity and uncertainty that storms through my mind. Time to step up my yoga practice and clear the small still space within that keeps me centered and in balance.

Jitters will resolve in their slowly unfolding fashion next week. Thank you for being with us.

Copyright 2008
www.lindalater.blogspot.com
Posted July 14, 2008

Saint Michael

2008-07-10T07:16:00.000-07:00

In my view, Michael has achieved sainthood. A secular saint, perhaps, but a saint nonetheless. Here’s why.

Michael has endurance: 25 years with me, a remarkable achievement given my independent nature, and the catastrophic events of the past two years. We know several couples whose marriages succumbed to unexpected stresses of medical origin. Each partner is a good person. The situation just wasn’t part of the dream they signed on for. And, in the end, they found themselves overwhelmed by circumstances.

Michael can shift focus on a dime. He jumped into our situation at once, educating us about cancer and the resources needed to assess and acquire superior quality medical care. As a result, he developed excellent Internet skills that continue to serve us well.

He is stalwart. He has accompanied me to every meeting with medical professionals, questioning and probing their knowledge and its applicability to our situation. To their credit, they continue to bear up under his inexhaustible questioning. And let us not forget the countless hours he has spent in medical waiting rooms acquainting himself with the contents of current periodicals.

Michael is steadfast in the face of the mundane and boring. He assumed responsibility for keeping our lives in order. Financial tasks that I formerly managed, are now shared. He also pitches in with the housework even more than previously, tackling necessary daily chores that make life bearable. So he sweeps, launders and tidies the yard when I am unable to do so.

Virtually every aspect of our lives has been adjusted so that my energy is conserved for the physical challenges of this illness. Most notable, and a skill that delights us both, is his evolution as a creative, efficient chef.

There is much more, but how much sugar can you stand? Bravo for Michael!

Copyright 2008
www.lindalater.blogspot.com
Posted July 10, 2008

Now & Then

2008-07-07T10:33:00.000-07:00

Time moves slowly because changes happen in small increments over a long period of time. Individually, they seem unworthy of note. Looking back collectively and comparing what is true for today versus what was yesterday’s reality helps me to be more aware of progress. A steady increase in ability over time is NOW my personal measure of the course of this illness. Here’s a sampling of changes.

I continue to observe the cancer chemotherapy: one tablet each afternoon. Add to that, Coumadin for DVT (Deep Vein Thrombosis), a side effect itself of cancer, painkillers and Over The Counter relief for nausea. So NOW there are, blessedly, fewer primary medications and far fewer meds for side effects, versus THEN, a year ago, when I was taking handfuls of pills daily. Less tracking, less stress, no slowing of improvement.

NOW I weigh in at 102. THEN, 6 months ago, I was struggling to maintain a high of 95 pounds. NOW my blood pressure is close to pre-illness levels at roughly 130/85. THEN, a year ago, I regularly measured above 160/100. Best of all, now the great swings are gone, and I see consistent readings virtually every day. NOW, no edema; THEN it came and went without explanation. NOW, no dry mouth; THEN, just a few weeks ago, I awoke with all my mouth surfaces glued together, barely able to take a sip to get the juices flowing again. NOW, after being in the sun, I can tolerate some tender, pink skin that disappears in a few days leaving a light tan behind. THEN, a year ago, sunshine caused a severe burn that required almost a month of painful itchiness to clear (and no tan).

NOW I’m back in the yard, pruning roses and pulling weeds; THEN, last Fall, I could not even lean over to pull a weed without fear of losing my balance and crashing to earth, unable to thwart the fall. NOW my stamina is improved so that we can welcome guests occasionally and I don’t have to excuse myself early for need of sleep; THEN, for over a year, we had virtually no social life. NOW I prepare meals faster and I enjoy it; THEN Michael went hungry (or stepped in to speed things up) until the food hit the table.

There is much more. Overall, however, my life has improved substantially. So much so that our oncologist has said that if I continue on this track, we may have to start discussing longer term results, even the possibility of Remission(!). These are the happiest words we have heard in a long time. What energy you all have put into helping to bring this scenario into view. Thank you for your patience and persistence.

We will return to Charleston in a week for our regular periodic imaging and blood tests for the experimental drug (Zactima) clinical study. Some results will be available the following week and others the week after that. As soon as we have them we will post them. We’ll see you at the beach … soon!

Copyright 2008
www.lindalater.blogspot.com
Posted July 7, 2008

Bulletin

2008-05-09T08:50:00.000-07:00

Final results of the bloodwork are in: both CEA and Calcitonin are down substantially, heading in the right direction.

CEA measures general cancer cell activity. January 31 was 5567, April 25 is 4926, a decline of 12 percent. Calcitonin, the specific measure for thyroid cancer was 8105 on January 31 and now is 4036, a drop of 50%! Since the beginning of the Zactima experimental drug trial in August 2007 the CEA has dropped 45% and the Calcitonin is down 79%. These are very positive changes, so we are optimistic. However, we still have quite a way to go to get to a level that indicates “cured.”

All other lab values, such as hemoglobin, potassium and such are within normal limits. These results reinforce a perception of a “stable” condition, meaning my body is successfully rallying to return to good health.

Thank you all for the support and reassurance that keeps us resolute in spirit and effort.

Copyright 2008
http://lindalater.blogspot.com
Posted May 9, 2008

Charleston Findings

2008-04-30T13:14:00.000-07:00

We are back from South Carolina with the verbal report on the CT scans taken last Thursday and Friday at the Medical University of South Carolina where the Zactima clinical experimental drug trial is taking place. These show virtually no change in the size of the tumors in my liver compared with the previous scans taken January 31st and February 1st. This is the third set of images with comparable results. We may conclude that my condition is “stable” at the moment.

One more set of results are due soon from the bloodwork accomplished during the visit. These results will either reinforce the “stable” pronouncement or present conflicting information. We rely on these measures to track the activity of the cancer cells and to keep an eye on other health indicators, especially those relating to liver function and the oxygen-carrying capability of the red blood cells.

These results could become a habit! I have found the news so hopeful that I have taken the bold step of renewing my AARP membership for five years. How’s that for confidence in the future! Although these results are encouraging, I am resisting the urge to jump to conclusions from three consecutive hopeful reports. The overall diagnosis of Stage 4 metastatic cancer of the thyroid remains, nonetheless.

As soon as the bloodwork results are in, I will post them. In the meantime, we thank you for your support and faith in a positive outcome. Knowing you are there means a lot to us.

Copyright 2008
http://lindalater.blogspot.com
Posted April 30, 2008

2008-04-16T12:03:00.000-07:00

Hair

Mine is still with me, clinging tenaciously more than a year after the start of chemotherapy. Three times we have prepared ourselves for this most significant side effect of cancer treatment with three different types of medication; I have no explanation for the hardiness of my top mop, Pure orneriness, I guess.

Some hair loss is evident though minimal. Evidence: the appearance of naturally curly regrowth where before were limp strands with barely a wave. New growth is stubbornly independent. It goes where it wants, resisting all sprays, creams, gels, ointments and exotic hair treatments.

My hair is shaped by an expert hair stylist into what might be called a “Pixie” if it appeared on someone thirty years younger than me. At my age, nothing is going to make me appear pixie-like, so I’ll have to come up with another descriptive adjective.

Every time I see myself in a mirror, I am reminded of Judy, a high school friend. She frequently expressed frustration with her “naturally curly” hair. After the briefest contact with a comb her topknot appeared perfectly coiffed ready for a prom, a hike, a game of volleyball or the classroom, the envy of the rest of us.

We are, however, prepared due to the kindness of a craft-y dear friend. Thank you, Kristen, for the crocheted beret, made of the colors most flattering for me and ornamented with a silk ribbon in rainbow shades of blue. Just charming! and not at all pixie-like. With luck, it may be pressed into service only as an ornament, not an item of attire.

We heard of one family’s demonstration of solidarity with a child experiencing chemotherapy and resulting hair loss. Every family member had their heads shaved!

Dear ones, we treasure and feel all the positive energy headed our way. Thank you for being with us. Please forgive the delay getting this message to you. Google swallowed Blogspot; they had me jumping through hoops getting reconnected! Next stop: Charleston, SC and more CT scans. We'll be in touch soon.

Copyright 2008
www.lindalater.blogspot.com

Close Call

2008-03-13T09:57:00.000-07:00

It was a regular doctor’s visit scheduled a month earlier to check on INR blood levels because I am on Coumadin, a blood thinner, to prevent clot formation. These reflect relative thin-ness of my blood, ideally in the 2.5 to 3.5 range, the higher the number, the thinner my blood. Levels below 2.5 indicate thicker blood, and associated risk of clots forming; higher than 3.5 and the risk of internal bleeding increases. The blood literally oozes out of the capillaries under the skin forming the appearance of a bruise, or deeper internally where bleeding is harder to detect.

The finger prick yielded a print-out seconds later on the digital blood analyzer of 8.0. I’ve heard of higher INR readings, but not often. After the “how are you?s”, the doctor asked me if I was aware that my nose was bleeding. Other than a tiny sniffle, I was not. What I had first on my question list was my black, swollen tongue first noted two days earlier. I brought this to my dentist’s attention, fearing a metastatic appearance of a new cancer tumor. My dentist put my fears to rest, but was more concerned about the fact that I had no idea how the bruise had come about: no accidental bite or blow to my face.

Putting this evidence together with a urinalysis that proved to be almost pure blood left only one course of action: immediate hospitalization. Half an hour later I was lying in an Intensive Care Unit bed being hooked up to an IV of Fresh Frozen Plasma plus two shots of Vitamin K. (The tongue was black from bleeding inside.)

The next morning I went home with the doctor’s words echoing in my mind: “You were only hours from departing this life entirely”. I always thought dying was preceded by accumulating pain and suffering. The truly scary part of this experience is that I had no symptoms to warn me that I was in peril. Now I have an even keener awareness of what I take in and how it interacts with other medications I need for maintenance of a stable condition. The effects of Coumadin are powerful and far reaching. It needs close, careful attention.

Once again I am happy to be able to sign off for both Michael and me. Bless you for standing by us so faithfully.

Copyright 2008
www.lindalater.blogspot.com
Posted March 13, 2008

Walk on the Wild Side

2008-02-26T12:41:00.000-08:00

Walk on the Wild Side

Between our arrival home from Charleston and meeting with our oncologist last week, a new symptom introduced itself. I don’t know what to call it so I’ll describe what happened.

Part of my regimen is exercise. Typically I’ll walk for a half hour: 15 minutes out and 15 minutes back at a comfortable brisk pace. Until recently, I walked alone, but lately Michael has joined me for companionship, conversation and his own exercise. Three weeks ago, Michael was not available, so I set out by myself and completed three quarters of our regular walking route in cheerful sunshine and a mild balmy breeze.

As was my habit, I walked in the middle of the road, atop the crown of the roadbed to avoid the graded slopes to either side of the yellow line. Then, involuntarily, my pace slowed, little by little, like the Energizer bunny finally running out of battery power, and I collapsed slowly to the pavement. I could no longer support my body weight.

I had fallen to my hands and knees. Wanting to get out of the roadway as rapidly as possible for obvious reasons, I crawled to the edge of the road to a driveway entrance marked by two brick pillars. Thinking a crumpled body by the side of the road might be cause for alarm for some unsuspecting passing motorist, I pulled myself to an upright position using a brick pillar for support. For 10 minutes I twiddled my thumbs, gathering strength. Finally I felt strong enough to complete the journey home at a much reduced pace. Fortunately the road is very lightly traveled, runs arrow straight between the corn fields with visibility of a half mile left and right of our lane.

The medical professionals are still scratching their heads about this. In the meantime, we are treating it as an episode of dehydration. And for now and the near future, I won’t be walking alone!

Copyright 2008
http://lindalater.blogspot.com
Posted: February 26, 2008

Up and Down Test Results

2008-02-14T08:12:00.000-08:00

Most recent blood test results are “mixed” showing changes within a narrow range in both directions as follows:

CEA on 2-4-08 is a 15% drop compared with 12-22-07 to 5567 from 6569 respectively. The Calcitonin levels are up slightly from 7313 to 8105. The objective is to lower the numbers as far as possible. Zero would be just fine, thank you very much. We are definitely headed in the right direction. And, like political candidates, we hope to keep the momentum going!

More results will be out to you as they arrive. In the meantime, look for various reflections on life with (and sometimes without) cancer.

Our steadfast gratitude for your reassurances and shared joy.

With heartfelt feelings on this Valentine’s Day!

Copyright 2008
www.lindalater.blogspot.com
Posted: February 14, 2008

Steady As She Goes

2008-02-06T16:31:00.000-08:00

We met with our MUSC (Charleston SC) Head/Neck oncologist on Monday afternoon (2-4-08). The CT scan of my chest and abdomen revealed essentially no change in size of the tumors in my liver and thyroid. The results are within a “margin of error” that could be accounted for by the slight differences in the number of millimeters between comparable November and February image slices. This is good news in that it signals a stable status of the illness. Now that we have two measurements to compare, the February results confirm the hopeful figures from November. This warrants optimism!

As yet, I don’t have the results of the lab analysis on the blood draw also taken Monday. All the numbers will be in by next week at which time I will pass them along, comparing these results with the previous analysis taken at MUSC in November.

Two subjective small improvements in the way my body works have appeared during the past two months that I consider significant to returning health. During this time I have gained 8 pounds. Never in my life have I rejoiced about GAINING weight!

The other is that my skin is no longer as fragile as it was as recently as December. Back then small cuts, scrapes, skin tears or abrasions required up to three weeks to completely heal. Now similar cuts heal in one quarter of that time. I imagine my immune system flexing its figurative muscles as it grows stronger!

We thank you for your prayers and an almost palpable flow of positive energy.

Copyright 2008
www.lindalater.blogspot.com
Posted February 6, 2008

Catch Up

2008-01-31T12:49:00.001-08:00

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

41%

2007-11-12T14:27:00.000-08:00

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

2007-11-08T11:29:00.001-08:00

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

Values Plummet!

2007-11-01T06:31:00.000-07:00

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

Chemo "Lite"

2007-10-28T09:28:00.000-07:00

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

First Anniversary

2007-10-12T12:55:00.000-07:00

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

Near Normal

2007-10-06T11:10:00.000-07:00

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

Forever Charleston

2007-08-26T13:26:00.000-07:00

We can't seem to get out of Charleston!

In quick succession, a number of unexpected events have extended our stay. After the trip to the Emergency Room (see previous posting of 8-16-07), we learned of a shipping glitch that delayed delivery of the trial medications and materials. This required us to postpone the start of the clinical study four days to 8/21/07. Like cascading dominos, this adjustment affected the timing of the follow-up appointments for the study, making a return home inbetween both uneconomical and stressful ... a 1200 mile round trip just to have 1-1/2 days at home. We extended our stay to the pleasure of our motel management.

It is just as well we stayed because I experienced some frightening spontaneous bleeding Saturday 8/18 that brought us to the Emergency Room again. A sequence of three blood tests over as many days revealed a loss of two full points of hemoglobin to a new low (for me) of 7.5, well under the acceptable "normal" range. In view of this trend and the equivocal status of the Coumadin/Lovenox levels in my blood, the ER attending physician mandated hospitalization and a transfusion of two units of blood which took place during the early hours of Sunday morning. They kept me two more nights, reconfiguring my medication schedules and feeding me surprisingly well-prepared tasty meals.

During this time, an Ultra Sound defined more clearly the clot in my left femoral vein as recently formed, probably within the past two months. We are hoping this means an improved chance of resolving the clot and reducing my risk of further complications.

By now I am well stabilized on the Coumadin upramp, I am fully integrated into the clinical study for Zactima, pain is manageable again, and my arms are clearing of the considerable bruising occasioned by approximately 40 vein sticks during the two weeks plus of our stay in Charleston. As a bonus, our Honda Accord offered us the opportunity to replace a worn out alternator whining for attention before the 600 mile trip home.

Tuesday we turn North for home with thanks to two MUSC medical teams notable for their uplifting spirit as well as their gracious professsional demeanor.

Copyright 2007

ER Redux

2007-08-16T04:07:00.000-07:00

Yesterday, a neck to knee CT scan established the baseline for tumor status in the clinical trial for Zactima. The CT also delivered an unwelcome surprise showing a Deep Vein Thrombosis (DVT) in my left femoral vein. The medical doctor from the study team organized the response to this discovery paving the way through an affiliated ER.

I haven't seen the radiologist's report so I have no details about the clot, although the ER attending physician explained that DVT is not an uncommon occurence as a sidebar to cancer. In lay terms he explained that cancer cells feast on the protein content of blood leaving a thickened fluid prone to forming clots that adhere to vein walls and, untreated, can break loose and lodge, usually in the lungs, creating havoc with life essentials such as breathing.

Coumadin, orally once a day, is the standard treatment for DVT and started immediately. The exact dosage for this medication, however, must be adjusted for each individual over a period of 1 - 2 weeks at the start of treatment. For the first few days I take a companion drug (Lovenox) in addition to the Coumadin to moderate introduction into my system. The Lovenox prescription comes in a funny little pre-loaded syringe with a very fine, ultra sharp stubby needle that I stick into a pinched up roll of fat (what little is left) on my belly.

After a few days, I'll have enough Coumadin on board to put my blood into an acceptable range of fluidity to start making the final adjustments to the dosage. Lovenox stops and blood draws start to monitor Coumadin levels.

We will be looking for stability over time of several blood factors strongly influenced by diet, including Vitamin K mostly from green leafy vegetables. I'll have to cut back on my beloved spinach and big green salads that, especially in summertime, I dote on.

At the moment I am feeling fine and have no DVT symptoms or side effects from the medication for this condition.

We are proceedinig with the Zactima clinical trial as there are no adverse medication interactions. It is truly amazing what the human body can accommodate!

More details on the clinical trial soon -- first dose to be taken on Friday August 17th. Thank you for your continued support for both of us. We enfold you in our thankful embrace.

Copyright 2007

Heading South

2007-08-05T14:32:00.000-07:00

We found a clinical trial site for vandetanib (Zactima) at the Medical University of South Carolina in Charleston and have an appointment for a physical exam and to meet the medical staff who will determine eligibility. They have reviewed my history and see nothing yet that could exclude me, so most of the hurdles will have been cleared by the time we head South.
We will be just 6 hours from home and find a lot of peace of mind for that in the face of a hurricane season NOAA forecasts as "active."

At this point, I am strong enough to tolerate a more lengthy trip, having finished the last course of chemotherapy on July 2 and the alternative vaccines last week. "Getting away" is a great relief from feeling house-bound during the treatments with so little energy, strength and stamina. So we are learning how to be tourists. I now have a far better understanding of why tourists dress as they do … for comfort! Those long days take their toll trekking from museum to attraction to restaurant in the relentless pursuit of documenting "been there." We find selectivity more suitable for our abilities. Fortunately we are both insatiably curious and find a leisurely pace through historic sights, museums and such very much to our liking.

Charleston’s history and charm await us; we hope they outweigh the gravity of the reason for the visit.

More next week.

Copyright 2007

Optimistic Neutrality

2007-07-29T09:41:00.000-07:00

Calcitonin blood level is a measure of thyroid cancer activity: the higher the number, the greater the cancer activity. Most recently, July 12th results vs those of June 6 show calcitonin down 25%. This is very significant and very encouraging.

On the other hand, the CEA (cancer antigens) marker is up 3% for the same period, essentially the same. Taken with the CT results reported in the last blog posting (no visible changes in size, location or number of tumors in the liver), these indicators encourage us to view the current status of this illness with "optimistic neutrality."

I am always ready to nudge momentum in a positive direction with a reasonable dose of optimism, just in case it is possible for mere humans to influence outcomes.

This "lull" comes at an opportune time as we search for a nearby clinical trial site for Zactima (vandetanib) (see last blog posting). The manufacturer designates research facilities scattered across the country as sites for human tests and requires a flurry of in-person appointments to launch participation. Early feedback from the Burlington, VT site is promising for my qualification. Trouble is distance – a two day drive – and the alternative of air travel – stressful and costly. For various reasons three sites originally designated that are closest to us are no longer participating in the trial.

Friday we cast a net of telephone messages to pin down more information. No responses: seems everyone was already bound for the beach. We’ll see what we fish up Monday to move treatment along a path we can characterize in terms more robust than "optimistic neutrality." How about "swell of hope?" "Positive surge?" "Affirmative momentum?"

Thank you for staying the course with us.

Copyright 2007

Change No Change

2007-07-14T11:16:00.000-07:00

We met with our oncologist yesterday to review the CT scan taken Wednesday July 11th. Compared with the previous scan of 5/14 there are no changes. We appear to be at a stalemate in this confrontation.

But life and research march on. A new drug now being tested on humans is still accepting participants for the "Phase 2" part of its clinical trial and shows promise for persons with the type of cancer the doctors now think I have: metastatic medullary thyroid cancer. The generic name is vandetanib, trademarked ZACTIMA.

This drug is designed to inhibit growth of cancer cells and the capillaries that supply them with blood. So far 20% of study participants with this type of cancer have experienced significant reductions in calcitonin (tumor markers that measure activity of cancer cells in this particular form of cancer). This excites the research doctors very much and is so promising that the FDA has designated vandetanib "Orphan Drug" status. I’m checking into what this actually means to us.

If it excites the doctors, then I’d like to have more of this type of excitement in my life!

Vandetanib is a one per day pill taken so once I’m signed up and registered, I’m sent home with a bottle of pills and a report card. We have no details at this time. The research unit is at Washington (D.C.) Hospital Center which is associated with Georgetown University School of Medicine.

So we stand at another crossroads. We’ll see what vistas open to us as we learn more.
The best news is that here it is July 2007, 9 months since the diagnosis, and I’m still here! Thank you for staying with us through a difficult time. We look forward to your company as the journey unfolds.

Copyright 2007
Posted: July 14, 2007

Latest Results

2007-06-17T18:25:00.000-07:00

The lab results from blood tests are flying in. Summary of the latest flurry:

Cancer markers: June 6th vs May 4th –
Calcitonin down 13%. Lower numbers are desirable as they indicate less cancer activity in the thyroid. There is still a long way to go to "normal, " but the physical exam of the same date as the blood test corroborates the improvement: shrinkage of the thyroid mass continuing a favorable trend from a peak of activity on February 27. Nice to have the corroboration and to see steady improvement over time.

CEA up 23%. This is worrisome because it indicates an increase in production of cancer antigens throughout my body.

Liver function: June 14th vs May 16th –
Remains within normal range. I’ll be sprucing up my diet and nutrition to reinforce and maintain improved health of this vital organ.

Red Blood Cells and Hemoglobin: June 14th vs June 6th –
These numbers reflect the degree to which I feel weak and tired: low numbers=low energy; higher numbers=higher energy as the oxygen-carrying capacity of the RBCs improves. For me, both remain low of the normal range, but not as critically as the May 16th tests that triggered the transfusion. Something to watch.

My subjective perspective: I’m holding my own. Sometimes I feel as I imagine a tightrope walker must during a traverse over the abyss: intensely concentrated on remaining
balanced by making minute adjustments to keep progress on track.

When I reach for support I find Michael by my side, and your energy lightening the load and guiding my balance. I am grateful for your presence with me on this journey.

Copyright 2007

New Meds

2007-06-13T06:22:00.000-07:00

The new medications are taken orally, so we aren’t tied to the Cancer Center’s IV equipment. The regimen is complex and specific, requiring Xeloda be taken at the same time every day, twice each day, with food, on days 1 through 10. Temodar is added on days 10 through 14 taken three hours before or one hour after food once a day. Zofran counteracts nausea and is taken (WITHOUT FAIL!) one hour before the Temodar. I spend a lot of time setting cookie timers, then figuring out what has been timed.

For any given course of chemo, side effects are difficult to anticipate. WITHOUT FAIL is no mere caution. Once I forgot the Zofran and spent the night wrapped around the toilet bowl. That will never happen again. Side effects now are moderate and manageable, though unpleasant. This could change as my body accommodates itself to ongoing treatment. Nevertheless, they are unpleasant. So is the illness.

The results of the transfusion and ProCrit treatment noted in the last blog: RBC up 35%, HGB up 39%, an excellent response that set me up for the subsequent chemotherapy. This rebound speaks well for the status of my immune system: happy news!

The PLEASANT part is waking up each morning, greeting the sunshine of a new day, squeezing Michael’s hand and rejoicing in the gift of time.

Copyright 2007

Mixed Response

2007-05-18T17:32:00.000-07:00

Mixed response is medical-eze for "no clear indicators of treatment efficacy." Recent tests returned offsetting results. In sum:

*Cancer markers May 4th vs April 5th – Calcitonin (thyroid) down 27%. This is promising, indicating less cancer activity from the thyroid. CEA up 6%, a marginal movement, indicating increased overall cancer cell activity in my body. Something to watch.

*Liver function May 16th vs May 4th – all three improved to within normal range. This means my liver is doing its job separating the good stuff from the waste and sending the unwanted on to the next stop out.

*Red blood cell and hemoglobin are markedly down. This is a matter for concern and may indicate suppression of the bone marrow’s ability to generate new RBCs.

Treatment recommendations discussed with our oncologist today:
*Blood transfusion to boost my body’s ability to withstand a course of chemotherapy. We have scheduled this for Monday, May 21.
*Resume chemotherapy using different medications: Xeloda for 14 days supplemented with Temodar days 10 through 14 to begin Tuesday, May 22. Rest for 14 days; resume cycle on day 28.

My subjective perspective: I have been losing ground very gradually during the past four weeks, particularly as to strength, endurance, and stamina. This is disappointing. Nevertheless, I am focusing on retaining gains and moving on to the next step.

We will confer with the medical team at the Issels Treatment Center/Oasis of Hope Hospital to discuss the advisability of concurrent treatments: their vaccine therapy plus the Xeloda/Temodar course of chemotherapy both administered here at home.

Maybe now is the time to dig out those best-of-the-best Seinfeld episodes and generate some giggle time here to loosen things up a bit.

Copyright 2007

Happenings

2007-05-08T14:38:00.000-07:00

In chronological order: Friday, May 4

Laboratory Bloodwork: Calcitonin (thyroid cancer indicator) and CEA (cancer antigens) plus the periodic complete blood and metabolic scan including liver function indicators. Results due this week.

Needle Biopsy of two nodules in my thyroid. This was done because an earlier test showed activity there plus the until recent continuous rise of Calcitonin. The need to do the biopsy sooner was overshadowed by the urgency of starting an effective treatment to protect my liver from further tumor growth. Results due this week.

That was just the morning!

Emergency Room visit. In late afternoon a surge of pain and pressure unlike anything I have experienced suddenly gripped my lower right abdomen. We are acutely sensitive, despite recent good news, that my liver continues under stress and that we must be alert to symptoms of failure.

To my good fortune and great comfort we found my own internist on duty in the ER. Over the course of the next four hours, one CT scan and the second complete blood work-up of the day he suggested possible causes: gallstones, kidney stones, gall bladder enlargement of unknown cause or simple gas. Now we "wait and see" and track the symptoms, mainly pain. Hard on the nerves, but each episode yields more nuggets of diagnostic usefulness. As a precaution, I stayed overnight at the hospital.

The GOOD NEWS: the CT scan from the ER noted that the liver tumors are still the same size they were on the January 3 CT!

We have much to be thankful for as we await results in your supportive company.

Copyright 2007

Still Here

2007-04-26T08:08:00.000-07:00

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

Treatment Review

2007-04-04T19:17:00.000-07:00

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

Treatment Results

2007-04-03T07:01:00.000-07:00

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.

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.

Time Management

2007-03-23T11:52:00.000-07:00

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.

Newer Directions

2007-03-11T21:04:00.000-07:00

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

Getting There

2007-03-10T13:51:00.000-08:00

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

There

2007-03-06T16:42:00.000-08:00

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.

New Directions

2007-02-23T07:30:00.000-08:00

We have taken a breather and had a chance to absorb unwelcome news. During the three months of uncertainty as to appropriate treatment, we prepared for the next step by exploring options for each likely treatment outcome. We didn’t hope for this, but at least we are prepared to make an informed choice.

We are moving forward with what we believe to be the most sensible, productive and safest plan: to proceed with complementary treatments concurrently. We will initiate the oncologist-recommended chemotherapy as scheduled next week. Starting the same day, I will receive a 4-week program of in-patient care at the Issels Clinic across the border from San Diego in Mexico: www.issels.com .

This treatment program was first offered by an MD in the late 1940s in Europe and continues to be practiced at a clinic there as well as in Mexico. As science advances, new treatments have been added, including the production of an anti-cancer cell vaccine from my own blood, a method now being studied by several government agencies including the National Cancer Institute.

The Tijuana clinic is located in a hospital, a benefit for me since the current chemotherapy plan has harsh side effects at a time when my liver function is becoming increasingly stressed. I will feel very much better having emergency care available within seconds and Michael close by my side.

Meanwhile, I continue my own integrated program: prancing around the living room led by a Richard Simmons video, meditating (really works!!), eating my vegetables, thinking pure thoughts and happy to wake up to your greetings each day.

Copyright 2007

Not Good

2007-02-21T14:44:00.000-08:00

The largest liver tumor has grown from 5.7cm to 8.3cm, a 46% increase in size. Therefore we are stopping the current protocol of Cisplatin and Irinotecan.

We will resume chemotherapy on March 1 with Temozolomide (Temodar) and Capecitabine (Xeloda), a self-administered treatment in pill form.

Of 17 patients monitored on this treatment with conditions similar to mine:
1 had a complete remission
9 had a partial response surviving for 9 months
6 had a greater than 50% decline in tumor markers (blood test results)
1 had a less than 50% decline in tumor markers

More later.

Copyright 2007

Crossing the Threshold: Independence

2007-02-20T16:15:00.000-08:00

As first-born of ten I was expected to be independent.

Mother loved telling the story of how I learned to walk at the age of 8 months. One day she peeked into the nursery to see if I was still napping. She saw baby Linda, balanced upright, intensely concentrated, stepping hands-free from one side of the crib to the other. I had mastered this adult activity while no one was looking, assisting or encouraging. Fiercely and aggressively independent from the beginning!

Being a burden or bother to others has always been anathema to me, to ask for help, a sign of my incompetence and poor planning. Fortunately, those who don’t learn life’s lessons until later can learn them quickly! On Diagnosis Day, October 2006, I was alone and baldly inadequate to confront a stealth opponent that commanded the very resources essential for life.

I was back in that crib making the alternate choice. For help, I turned first to my stalwart companion of 26 years, my loving husband. He urged me to take the next step: to reach out for support and encouragement from others. The clincher was to take a step yet farther: to accept the aid of family, friends and an army of unknowns volunteering their caring and prayers for the strength to separate myself from the greedy appetite of this illness.

As we approach the first treatment benchmark, I take great comfort in feeling your presence at my side. You have been patient teachers of a most recalcitrant student who thanks you with unbounded gratitude.

Copyright 2007

from MICHAEL

2007-02-16T03:41:00.000-08:00

A note from me to everyone who has written, phoned, messaged, or faxed to Lynn:
Words cannot suffice to express my thanks to you all. Your messages of hope, support, humor, warmth and- yes, Love- are invaluable. Lynn is enormously buoyed up by the surety that out there in the great world beyond pain and anxiety there are so many folks who hold her in their thoughts with such great affection. Please keep the good feelings flowing to this valiant lady!
Michael

Composed 02 14 07
Copyright 2007

Anthem

2007-02-04T08:53:00.000-08:00

With treatment underway, the new waiting game is checkpoint test results. While waiting, my busy little mind searches for ways to improve this situation: perhaps add a component that will contribute to a positive outcome. So far, the search has been for substances to put into my body to improve the physical condition, and into my mind to improve the mental state in which the physical operates.

For straight to-the-heart sustenance, however, music has fed my soul in a deep and complete way leaving me more whole than other artistic media. As I reflect on inspiring music, Schumann’s Symphony #4 in D Minor springs to mind. Right from the start, it is triumphant! I favor the version by Paul Paray conducting the Detroit Symphony Orchestra for its vibrant intensity and architectural robustness, qualities that add a supportive dimension to my healing effort.

This choice represents a special legacy for me. Long ago, my sister bought it for her record collection and left me the original LP when she moved out as my roommate and married. A few years later she died, and the record became mine. I played that LP until the ridges and valleys in each groove wore down to a white hiss. Then I bought a tape cassette and played that to a howling whine. Now this music is on a CD, ready to serve as anthem for this journey, almost as if sent ahead by my sister’s spirit to help me through this time.

As the angst of waiting builds, I’ll keep cool with Schumann. So pass the ipod, and play on, Paray!

Copyright 2007

Treatment Protocols

2007-01-30T09:54:00.000-08:00

For those interested, following are the various protocols in their accurate and final forms during the treatment phase of this situation. Some of you have asked for this information.

Chemotherapy single session, 4-1/2 – 5 hours (from nursing discharge notes) in sequence delivered (cycle=Treatment Day 1, Treatment Day 8, Rest Day 22; repeat):
Saline w/electrolytes:
Potassium 20mg IV
Magnesium 1 gram IV
Kytril 2mg orally )30 minutes before
Decadron 20mg IV )Cisplatin (for nausea)
Cisplatin 42mg IV
Irinotecan 70mg IV

Post therapy for side effects:
Zofran 8mg orally 2x/day for 3 days following treatment (for nausea)
Compazine 10 mg 1ea/6 hours if needed (for nausea)

Ongoing:
Potassium 20mg 1 ea 2x/day orally ongoing for low potassium levels
Pain medication: propoxyphene HCl 65mg, 2ea every 5 hours while awake

Supplementary Protocols:
Systemic Formulas OXCC Cleanser Cell #482 (combines the characteristics of healthy cells as it normalizes, maintains and cleanses), 1 ea 2x/day
Systemic Formulas OXOX Activator Cell #483 (supports healthy cell structure in deep tissues), 1 ea 2x/day
Systemic Formulas P #78 (nutritionally supports normal function of the pancreas), 1 ea 2x/day
Acupuncture: points for boosting immune and liver functions day following chemotherapy
Coffee enemas, 2x/day (facilitate elimination of toxins)
Renew Life, Digest More Ultra: Plant Enzyme ProprietaryFormula (digestive enzyme blend)
Renew Life, Essential Flora 50 blend Proprietary Formula (acidophilus blend)

Complementary Therapies:
Meditation: 20 min/day
Visualizations: Daily
Exercise: ~30 minutes/day, 6x/week, Rotating: Cardiovascular, resistance, QiGong
Yoga Class: 1-1/2 hr, 1x/week
Diet/Nutrition Counseling, as needed
Stress Management Counseling, as needed
Cancer Support Group, 2x/month

Vitamins & Minerals:
Vitamin E, 400 iu, (as di-Alpha Tocopheryl Acetate), 1 ea / day
Vitamin D, 800 iu, (as Cholecalciferol), 1 ea / day
Includes: calcium 119mg as dicalcium phosphate)
Selenium, 200 mg (as Selenium Yeast)
Includes: Vitamin C, 60mg (ascorbic acid)
Bioflavanoid 386mg
Brewers Yeast Debittered
Selenium Yeast
Citrus Bioflavanoids (orange peel extract=citrus sinensis)
Folic Acid, 400mcg
Includes: Calcium 75mg
"Other" = dicalcium phosphate
Vitamin C, 1000mg (as ascorbic acid), 1 ea 2x/day
Omega 3 Fish Oil, 1000mg softgels, 1 ea 3x/day
Saturated Fat 0.5g
Polyunsaturated Fat less than 0.5g
Monounsaturated Fat 0g
Cholesterol 5 mg
EPA 180mg
DHA 120mg

Each treatment team has this information. If anyone sees worrisome interactions, please notify us so that we can review for suitability.

Thank you with gratitude for your participation in my care.

Copyright 2007

Treatment

2007-01-24T16:46:00.000-08:00

At last! Chemotherapy has such a bad reputation, I never thought I’d be looking forward to it! This transition marks the end of a long period of intense anxiety and suspense between the first diagnosis of cancer and the final treatment plan. During that time, the cancer was presumably progressing at an unknown rate, the tumors in my liver further curtailing functions essential to life.

The low point came between Thanksgiving and Christmas, skating on thin ice without treatment and a feeling of slipping away. Unanticipated setbacks (death of our oncologist) and holiday downtime prevented developing the diagnosis while adding to uncertainty and tension. We consulted qualified professionals to learn what could be done to bolster liver function and my immune system while waiting. Herbal supplements, vitamins and a rigorous nutrition/diet plan to reduce toxins as much as possible apparently worked. Just before Christmas, I began to gain a bit of strength with less fatigue, improving my spirits. A rekindled clarity appeared in my eye along with a sense of purpose.

Now we’re back in unknown territory. Each person responds to chemotherapy individually, just as they manifest the symptoms of the illness uniquely.

The mechanics are simple: a 6-hour IV drip delivering in order: hydration, Cisplatin, anti-nausea medication, and Irinotecan. The cycle: two consecutive Thursdays, skip one; repeat. Blood tests provide weekly glimpses of my response to the treatments. Monitor progress at the 6-week mark with a CT scan.

These benchmarks are engraved into our calendar; we eagerly await results.

Copyright 2007

Leavening

2007-01-17T18:26:00.000-08:00

Optimism is infectious, spread by cheerleaders, fitness consultants, inspirational speakers and myself, a perfect Typhoid Mary of optimistic viruses. I do, however, harbor a reserve of realism used to identify obstacles, hurdles, and roadblocks before staking out benchmarks toward a goal. Here is my adjusted assessment of this situation after meeting with our new oncologist, a reasonable, level-headed and practical man. At the top of the To Do list he prepared for me: "Don’t panic any more than necessary."

The facts have been previously posted. To summarize:
Goal of treatment: shrink liver tumors; control symptoms
Chemotherapy starts tomorrow: two weeks on, one week off; repeat; check progress with CT
Prognosis: Not curable; IF treatment works, "you could last weeks to years". Here are the numbers for those with the type of cancer I have who have been treated with the chemotherapy I will receive:
43% have tumor shrinkage of greater than 50% of the pre-treatment size
29% have stabilization of tumor size (no growth during treatment)
28% experience growth of the tumors
We have a 72% likelihood of improving on a precarious, but not irretrievable, situation. This deserves optimism, especially considering the positive factors:
My overall sturdy health, especially recent recession of symptoms
My intrepid husband
My unfailing family
Help and encouragement from an army of friends and supporters
A standard protocol for chemotherapy
A green light for continuing herbal supplements during chemotherapy

This is the biggest challenge of my life and a formidable task for those who join me on this journey. Embrace and spread the virus of rational optimism!