Another Guest Blogger Offers Words of Cope

Danielle DiPietro, National Awareness Director of the Mesothelioma Center at Asbestos.com, bumped into my blog and then contacted me to ask if I would post a guest blogger. Oh yeah! The goal of Danielle’s organization is to help spread awareness about the symptoms and treatment of a rare kind of cancer called mesothelioma. In addition to general outreach, the team at Asbestos.com works one-to-one with patients and families to help find local doctors, treatment centers, and support groups.

If I learned anything from my experience with breast cancer and cancer treatments with symptoms that were often times more debilitating (though ultimately not more deadly) than the disease itself, I learned the need for the village. I learned that I needed a village to inform me, I wanted a village of choices, and I leaned on a village of hearts and strengths. Danielle and her crew are of the village of cancer experts and caregivers, and I am honored to post their article here:

 

Coping with Mesothelioma Cancer                                                               

Nobody ever expects to hear the words “You have terminal cancer.”

Unfortunately, more than 3,000 mesothelioma patients in the United States hear these words each year. Mesothelioma is associated with an average prognosis of one year, and even though survivors continue to beat the odds, patients must still cope with the challenging physical and mental stressors of the disease.

Coping on a Physical Level

Even with the most advanced treatments, mesothelioma patients still experience symptoms with a varying degree of severity. The symptoms typically intensify as the cancer progresses.

Some of the symptoms that mesothelioma patients can expect include:

• Chest pain
• Difficulty breathing
• Coughing
• Shortness of breath

When symptoms begin to interfere with daily life, traditional treatments or alternative therapies can help patients cope. Surgery, chemotherapy or radiation therapy can help relieve most symptoms. However, these standard therapies can cause their own sets of side effects for patients to endure, including nausea, diarrhea, infection or appetite loss.

Although these issues can often be managed with certain pharmaceuticals, some patients elect gentler alternative therapies to avoid the unwanted aftereffects of standard treatments. Yoga, acupuncture and massage are among the most common alternative therapies used by mesothelioma patients.

Coping on an Emotional Level

In addition to physical side effects, emotional side effects can also arise after a mesothelioma diagnosis. Sadness, anger, depression and anxiety commonly affect newly diagnosed patients as they try to figure out what their futures hold. Managing these feelings can be just as important as managing the physical side effects of the disease.

Joining a support group is one of the most common and effective ways that a mesothelioma patient can process the mental aspects of a terminal cancer diagnosis. These groups are specially designed for cancer patients and their families, and they offer a safe forum for open discussion of any topics related to the post-diagnosis journey. These groups offer low-pressure opportunities for patients to process the fear or frustration they are experiencing.

Meditation is another way that mesothelioma patients can release emotional tension. Simply focusing on something other than the body for as little as a few minutes each day can provide a notable reduction in emotional stress.

Author bio: Faith Franz is a writer for the Mesothelioma Center. She combines her interests in whole-body health and medical research to educate the mesothelioma community about the newest developments in cancer care. In Awe and Gratitude for the Village,

L.

Read Full Post »

Infusion #3

Each round of chemo had its distinctions. By the third go round I looked like a seasoned player with my bald head and slight swagger for knowing my way around the chemo ward; but, the truth was, I dreaded this infusion. My fear of needles was rippling through my brain waves, gripping my stomach, twisting my nerve endings. I didn’t want to be a pin cushion again. I didn’t want the initial blood test to check the white cell count, I didn’t want to endure the botched attempts at finding a strong vein. My supply of courage felt depleted. So, I needed to refuel.

Something that occurred to me in the meditative hours between infusions, as I thought about having completed two rounds – just two more to go, I was half way home – was that there were four rounds. Four. Four corners, four legs, four seasons, four directions, four elements – “1, 2, 3, 4 Tell me that you love me more (Feist).” In numerology, four is stability, the builder, and a sort of completion in physical. I wanted these four infusions to be a complete circuit of chemo healing for me and so I determined to honor the fourness of this process and recognize or honor the elements and directions.

There was a song in my head then – it’s in my head now and has been in my head for days, prodding me to write this post – that goes like this: The earth, the air, the fire, the water, return, return, return, return….  The chorus is sung over and over again like wild folk dancers, holding hands, skipping swiftly in a circle around a blazing fire until the mad circling and the song whirl into one.

the earth, the air, the fire, the water

The song seemed to beckon to me to dedicate each round of chemo to an element in the order the elements were listed in the chorus. Rounds 1 & 2 were behind me, so I honored them simply by meditating on each experience and its connections to its respective element.

The first round was earth, the spirit of the north. The first round grounded me in the physical experience, the reality, of chemotherapy. I was introduced to the room, the chair, the players, the system, the instructions, the needles, tubes, plastic sacks of chemicals, plastic mug of ice cubes, miniature cup of support pills; and, therefore, I learned my needs and that I needed  to advocate to have my needs met.

The second round was air, the spirit of the east. The second round was about implementing ideas and breathing my life into the infusion experience. I spoke up and let the winds blow away all that I didn’t need. Then, that which would work for me – a gentle nurse, a loving outlook – was inspired and respirated. I inhaled and exhaled slowly, deeply, meaningfully.

And, now, the third round that I’d been dreading took on a measure of excitement for me as I thought on it as the element of fire, the spirit of the south. Fire is passion, thrill, drive, ambition – I love fire. But it also burns. Therefore, thoughts of fire ignited some fresh fear in me. So, on the evening before infusion day, I emailed my beloved Light Brigade to explain my dismay as well as to describe the refreshed attitude I hoped to bring to the experience, and requested an extra oomph to the energetic support that they offered me.

Gina, our High Priestess, responded with an added note to my idea for honoring the elements and directions, specifically the 3rd round of fire. She wrote: In the Celtic system South is about song- so I propose that we all sing out gold to Linda tomorrow. You can just segue from one Goddessy song to another. I’ll send you out some lyric sheets if you think that would be helpful Let me know.  Linda- We are right there with you girlfriend!!! Do you want anyone in person??? Any songs in particular that sound helpful??

I don’t know whether it was the notion of music that had “the charm to sooth my savage breast” or if it was the offer of accompaniment, but I walked bravely into that fiery third round. As it happened, it was more arduous as the chemo was amassing power and I had an allergic reaction that made my face swell and eyes flame red. Yet, somehow I trusted the fire as a cleansing agent and was at peace with it all. It was as though I was being carried by the hum of a celestial choir.

My sister/friend recounted the experience in an email that expressed my gratitude to the Light Brigade:

Hello Lovelies,

I’ve heard from Linda and she is home, calm, resting and well.  She reports to me that she woke up singing and that indeed today was filled with song.  Over the course of the day and at appropriate moments song could be heard, at the nurses station, here and there – lifting her up.  She felt our holding her in a harmonic embrace.

Seems each treatment so far has brought her new challenges and soulful preparations in how to deal with her worries.  I am glad that in some small way we all have been here to support her through.  Reade was again with her today and steadily at her side.  She tells me she had a reaction to one of the drugs, so they gave her Benadryl to combat the reaction, so on top of everything else, she was in a sleepy, Benadryl haze as well!   The reaction manifested around her eyes, so send some healing to her vision and mind/eye centers.

Needless to say a few days of rest, healing, recovery …. and our continued light, love, holding, lullabies and golden hugs pouring over her house and heart are welcome!

In Her Service,
Deirdre

This is a Celtic song that my friends sang that day called the Prayer of Strength:

   Atom-riug in-diu

 Niurt nime

Soilsi greine

Etrochtai esci

aini thenet

deini lochet

luaithi gaithe

fudomnai maro

tairismigi thalman

cobsaidi ailec

Translated:

Today I go forth with

The strength of the Skies,

The brightness of the Sun,

The splendour of the Moon,

The brilliance of Fire,

The swiftness of Lightning,

The speed of the Wind,

The depths of the Sea,

The steadfastness of the Earth,

And the steadiness of Rock.

In awe,

L.

Read Full Post »

A Guest Blogger with Helpful Healing Advice

A caring and generous soul bumped into my blog and then took the time to contact me to offer encouragement to folks undergoing cancer treatment. David Haas is an advocate for cancer patients, specifically those with a rare and aggressive form of cancer contracted from asbestos exposure called Mesothelioma. David is also a rock climber, golfer, and judging from his twitter and facebook pages, an extremely fit and brave human being. Though we have only exchanged a couple of email, his goodness is readily apparent and I imagine that David’s large heart is strengthened by his physical fitness. Here is the article that he wrote with a link to a corroborating article to share with my readers and all who are impacted by cancer and cancer treatments:

Why fitness is important for cancer treatment

By: David Haas

Cancer patients must go through various treatments, including surgery, radiation, chemotherapy and other types of treatments. As a result, cancer patients’ bodies go through a tremendous amount of stress. Though every treatment method is effective for killing the cancer cells, it can leave patients with horrible side effects. Unfortunately, many cancer patients do not know or have not been told that there are ways they can help themselves.

Fitness

Physical activity is one of the most beneficial things that cancer patients can do for themselves. This applies to patients in any stage of cancer. Of course, physical activity and fitness helps patients with any type of cancer. Whether one is diagnosed with a common cancer like skin cancer or a very rare and aggressive disease like mesothelioma, Fitness during treatments can help.

How fitness helps cancer patients

Physical activity is beneficial for anybody, but it is especially important for cancer patients for a few reasons. First, fitness keeps cancer patients’ body functioning properly. Without fitness, the respiratory system, immune system and circulatory system would not be as effective and efficient. Moreover, treatment can really hurt the body’s healthy organs, though it kills cancer cells. As a result, a cancer patient’s body must work extra hard to recover from extensive treatment and therapy, causing side effects like insomnia, fatigue, pain and dizziness. Fitness can relieve these and other side effects, making a cancer patient’s life a little easier.

Second, cancer can really affect patients’ thought patterns and overall outlook on life, causing them to become very pessimistic, depressed and anxious. Unfortunately, treatment can also further affect patients’ mental health by causing a chemical imbalance. Fortunately, fitness can fix chemical imbalances by producing hormones that act as aphrodisiacs, though not addictive or harmful. Many studies show that optimistic people are generally in better health and can heal faster than negative people. This is especially important for cancer patients.

Third, fitness can help keep the body detoxified. Toxins can severely inhibit the body’s immune system and other functions. By keeping it detoxified, cancer patients will feel healthier and have more energy. The toxins will leave the body via excretion, such as urine, sweat and defecation.

This article also lists why fitness is important for cancer patients. Though fitness is not a cure for cancer, it can greatly improve cancer patients’ quality of life and possibly prevent the cancer from returning.

 Thank you, David. I am inspired

ps. The above is not a picture of me, yet.

In gratitude, L.

Read Full Post »

Once Upon a Time

My father was a man of legends. As the stories go Richard (Dick) Haldane Sperry was:

• A star sportsman who sacrificed his pro golf career for the sake of his family. Dick felt that the touring would be too hard on a young wife and multiple baby daughters, and, thus, quit despite the trophies on shelves and mantles that testified to his talent and the highlight moments of rubbing elbows with the greats such as introducing Arnold Palmer to his wife.

• An up and coming business man. As a strong proponent of Dale Carnegie’s Secrets for Success, Dick quickly climbed the corporate ladder and won many friends and influenced people along the way. The stories told to my sisters and me portrayed our father as a leader among men. Dick clinched the deals and advanced others in their careers as was evident by the amount of gray flannel suits who insisted we call them Uncle. The man we called Grandpa was the president of the company that hired our father after his cancer was deemed inoperable. Legend has it that Dick took a risk to search for new employment, for more money and better insurance benefits for his family when he learned that he was going to die. The man we called Grandpa Johnson hired him based on Dick’s promise that he would increase profits by a certain percentage within the estimated two years that he had left to live. Grandpa and Grandma Johnson told us countless stories about our father’s bravery and gallantry, saying again and again that they “loved him like a son,” and, so, remained important in our lives long after our father’s death.

• A tragic hero who battled a monster molecular melanoma with experimental treatments. In the early 60’s there was little information about cancer. The surgeon general just issued the first report on the connection between cigarette smoking and disease in 1964, and it wasn’t until 1966, the year my father died, that “Warning: cigarette smoking may be hazardous to your health” was printed on the side of the package. Although Dick was not a big smoker and quit when he determined that it cost too much money, he was diagnosed with skin cancer that had metastasized to the lungs at a time when cancer equaled death. There was no cure. So, as the story goes, he gave his body to science by signing on to work with a progressive Dr. Li of Nassau Hospital, Long Island as a guinea pig for cobalt treatments and a new “vaccine”.
• A spiritual warrior with a strong faith in God. Our father’s faith was evidenced by our family’s daily prayer practices of grace before meals and kneeling before bed at night, as well as our weekly attendance at church, and by the Sunday school class Dick taught after he was diagnosed. Yet, the strongest piece of concrete proof we have of our father’s belief in God is the treatise on life that he wrote on his death-bed.

As I understand this story, the treatise entitled “What is the Use?” was dictated to a nurse after Dick came out of a long coma. Upon finishing the piece, he lapsed back into a coma and died six months later. My sisters and I believe that the writing is divinely inspired, that our father met with angels on the other side, and then returned to leave a legacy of divine guidance for us. The single page document of eight short paragraphs in a script-like typeface is framed and hanging in our homes as well as memorized and oft quoted by the four of us. It begins with a recognition that this effort will alarm Dick’s loved ones since the gesture to “summarize opinions on life” might imply that he’s quitting the battle, but he makes no apology for needing to “clearly express (his) view on living.”

“God is love. (This is sure)” he tells us, and then proceeds to delineate the qualities of a “life (that) has been well lived.” After enumerating character traits to strive for such as purpose, daring, perseverance, focus, and self understanding, he concludes that “one (can) know the correct way to think and act” by studying the life of Jesus. “Understand His way and life will be a magnificent adventure.”

Chiseled in our father’s rose-colored gravestone under Richard Haldane Sperry, 1933 – 1966, are the final words of his treatise: A Magnificent Adventure; and I do believe that was his experience. I need to believe that his words were inspired, that his life was Christ-like in its impact and brevity; and that all the legends of his wisdom, bravery, and generosity were true.

The last time I saw my father alive, he was frail in a white undershirt and boxer shorts, and in the thralls of a paralytic seizure. I discovered him. He was stiff as a plank, convulsing, and gurgling, “Marti,” in an attempt to call my mom for help. I fetched my mom and ran for help from our neighbors, then stood at a distance to watch the ambulance with its screeching red light take him away. The last image I have of my dad is of a slender, pale, and lifeless young man in a casket. I was eight. My sisters were six, five, and two. The legends, the heroic stories, are vital for breathing a powerful life into the father of our child minds.

As an adult, as a flawed human still striving for those estimable qualities, it has been equally important for me to meet a life-sized version of my father. The moments in therapy when I had insights into his humanity, the few hints at his fallibility dropped by my mom have helped to liberate me from larger-than-life expectations of myself; and, yet, for the most part, I’ve still relished the glowing eulogy of my father’s life story.

Then, in May 2009 in the thick of my healing journey, my mother’s birthday present for me was to meet me halfway for lunch. I drove an hour and a half from New York, she drove almost two hours from her home in central Connecticut, and we enjoyed a nutritious heart-to-heart conversation over large salads. It was the best birthday present ever, and, at the end of our precious time together, my mom gave me, among other gifts, a letter written by my father.

It took me a few days to find the right time and space, free of responsibilities, to read the letter as I was fully prepared to weep buckets; and I did weep, but I was also sobered by the gift. There, in a yellowed envelope addressed to C.V. (Grandpa) Johnson, were three pages of crude lined stationery. The handwriting was tight and forward slanting, the words evenly spaced and the lines double-spaced indicating the care the author took to be legible to the reader. The penmanship was imperfect, there were punctuation mistakes and misspellings, there were scribbled out errors and corrections. At first glance, it seemed written by a teenager or older child.

Upon reading, it became clear that the letter was written while Dick was in the hospital, awaiting the first injection of Dr. Li’s vaccine. The letter is a thank you note and begins: “What do you say to a man who has lifted you up when you are down and close to out? I know one thing for sure, I don’t have the words in my vocabulary to completely express the gratitude my Family and I feel for the helping hand.” As he believed that he would have had to “rely exclusively on strength of will to defeat the enemy within” if it were not for Grandpa Johnson.

“There is no doubt in my mind that your help in my time of need has made it possible to defeat this cancer. That I will arise and walk out as a whole man. Ready, willing, and able to join in life’s larger wars. Confident in the fact that where there is a will there is a way.”

He goes on to tell how Dr. Li was in the night before to express confidence that the vaccine would work in his case; and then tells how the stay in the hospital gave him time to polish up his sales plan, and plan for the success of the sales program, how the treatments would be timed in such a manner that he would make the Chicago sales trip. “All in all, things are working out beautifully,” Dick writes with the power of his positive thinking. The letter is dated 9/16/65. Dick died a year later.

According to legend, my father had accepted his death sentence. So, it was so painful to read in his own words the extent to which he had suffered and struggled to live. It was so painful to empathize with his fear, to identify his fear as my own. I too have a strong faith and am willing to go to great lengths to heal and have a positive attitude in the face of strife. I too fear the “enemy within” me, and really want to live.

The gift from my mother: the words from beyond the grave written by the man who was my father, made me realize that my faith needed to grow to include an acceptance of death in order to truly be free.

Humbly,

L.

Read Full Post »

Flash Organ Recital

Last week my dear friend Wendy visited me for the first time since her move to L.A. She was in New York for a concert and I was blessed with a day, a precious day with my friend. It had been more than a year since we “tawked” over tea and so we had much catching up to do and started off by comparing notes on health issues. A few minutes in, we looked at each other and rolled our eyes like, oh my God, it’s come to this!?

I said, “Is that what happens – we’re getting on in years so now it’s all about ailments? What happened to commiserating over lovers and money?”

We laughed and Wendy quipped, “OK. We’ll only allot ten minutes for our organ recitals.”

Get it? Organ = body part. Also equals somber and reverential. Sanctuary or Temple music as in ‘the body is the Temple of the Soul.’

Anyway…

Later in the week, I was obliged to go to the endocrinologist for fine needle biopsies on the enlarged nodal clusters on my thyroid. Six needles in my throat. The procedure hurt. I cried. I told the doctor, “These tears are not about you or your needles. I think I’m having Post Traumatic Stress Disorder triggered by additional poking and prodding in search of cancer.”

She was apologetic, of course, and explained again that 60% of all women have nodal clusters on the thyroid, and 80% of all nodes are benign, “but if the nodes grow, we have to check them. Besides, thyroid cancer is the best to have, it’s the easiest to treat. We just take the thyroid out.”

I agreed with “better safe than sorry,” and signed on the dotted line for the biopsies; but, I don’t agree with “the best cancer to have…” No cancer is the best to have. I’m done. I gave more than 10 minutes to my organ recital last year, and I’m willing to give an extra 10 by writing the blog about it. However, my intention is to write that blog in the past tense. I pray. I should hear the results sometime this week.
I’ll let you know.
Sonorously Yours,
L.

Read Full Post »

Checking Under the Hood (continued)

Something I started to grapple with in the “coming out” season of Spring ’09 was other peoples’ responses, reactions, and changed attitudes towards me. It’s not that I wanted to hide my breast cancer diagnosis. On the contrary, my m.o. was to gather a large posse about me and so I was very liberal – unabashed in fact – about spreading the news, which is in keeping with my blogger’s nature. But, just as I blog now in the solitude of my little room, I transmitted information then via phone and email. What shifted in the Spring was the view. After the quiet censor of winter hibernation with its natural intimacy, the sprouts were popping, the birds were twittering, the critters were poking their noses about and so was I which meant I was meeting more mirrors. There were more faces to reflect what was going on inside of me.

At the end of April, I attended a big 60th birthday bash for a dear friend. It was my first time dining out since the diagnosis in February which is the day I quit my sugar addiction, and my first time in a joyous cluster in which small talk is the protocol. Even so, it was wonderful to be a part of a celebration for a friend. It was fabulous to attend a party and eat. Before cancer diagnosis, I ate very sparingly while out with others, and then went home and binged on sweets. Yes, I had a serious, control-freakish, eating disorder for a number of years. It was brand new for me to fully partake of a party buffet and my body, heart, & soul were ecstatic. As I gobbled up multiple helpings of salmon and kale and roasted fingerling potatoes, I felt as though I had been released from the tower to rejoin the feast. Plus, I learned that eating made me feel solid, grounded, better able to feel at ease in an eclectic energy mix. Being well fed helped me to participate in small talk. So, I was having a fine time at the party, and yet, I felt fatigued, and the fatigue scared me.

My journal reports: I feared that the fatigue had to do with my “condition” which is actually a non-condition right now – the cancer was surgically removed, and I am not in the thralls of chemical or radiation therapy at present. The only real condition I have is the idea of cancer. The idea that I had it, the idea that there could be some remaining, lurking, crawling or creeping through the lymph system, the idea that further cancer treatments are pending. I think these ideas are fatiguing me.

Before I left the party, my friend Susan Phalen and I found a quiet corner to sit and talk, and I told her about the visit with the oncologist. I told her about the oncotype dx test, the variety of chemo tracks, and the oncological slant towards riding one of those chemo rails. As I talked, my friend’s eyes pooled with tears which made me realize the heaviness of the ideas that I’m carrying right now. I hugged her, and then I had to go home.

The fatigue was still with me when I woke the next day and so I pushed myself to walk it off. As a young woman alone in New York City, I fought off depression by chanting to myself,”Better and better everyday in every way,” while I walked the thirty blocks from my office in Midtown to my home in Chelsea. I recalled the effectiveness of that practice and chanted, “stronger and stronger everyday in every way,” while I walked our dog Bert up and down the hill near our home, and it worked. With my battery charged, I was able to garden, clean, take my daughter Acadia to a street fair, and attend another friend’s birthday party. Again, I was happy to celebrate a friend and pleased to eat, but something happened at this party that really challenged me.

My journal tells it best: The party was fun but strange for me. The party throwers – a couple I adore – knew about my diagnosis and tried to care for me by not telling me it was potluck. Lovely intention but… I’m a wasp from Connecticut raised by Emily Post – I never come empty-handed. I was mortified. Nobody else at the party knew why my family and I were free-loaders. Well, maybe nobody knew, BUT I knew, and I knew why, and…OK, so I’m learning about how hard it is to be on the receiving end of care. I’m also learning about how others act toward cancer. People seem to think I’m an invalid right now.

My great friend and tennis partner Susan (Ry) Ryan told me that I should “use” this time period. She said, “You should use this experience to take and get all you can like Imus in the Morning is doing with his prostate cancer. He uses his condition to get sympathy for fund raising purposes and he’s totally out there on his radio show.”

I laughed and thought, Ya, I put it out there too. Collected sympathy, prayers, and attention for my healing account while in the privacy of my little home just like Imus broadcast his cancer diagnosis & treatment from his sound booth. It’s a lot easier to receive care when you can’t see the concern or the tears in their eyes.

(to be cont.)

Unabashedly yours,

L.

Read Full Post »

Checking Under the Hood

Even though I was hung-up at the crossroads, the pace picked up a bit after seeing the oncologist. Dr. Hershman had spread a map out across her desk (figuratively speaking) with a variety of treatment tracks each with varying degrees of difficulty and I had to pick one. There was a chemo track for Stage 1 & 2 lymph node positive that involved A/C (Adriamycin Citoxan) in which hair loss was a given, then radiation and hormone therapy. Another chemo track with a slight curve that I recall had the apt initials FU (5-FU Fluoroucil) which involved more doses over a longer period of time and less or no hair loss, then radiation and hormone therapy. Another chemo track called T/C (Taxotere Cytoxan) with a steep incline that required a strong engine because TC was reportedly hard on the heart and the immune system, then radiation and hormone therapy. Or, an express track of only radiation and hormone treatments. So, before I could link arms with the scarecrow to ease on down a chosen road, I had research to do — I needed to submit to the prescribed medical tests, and to turn an eager ear to the stories on the wind.

The track I wanted – the express track – was always an available choice, but in order to get blessings from my western practitioners, I had to, or, rather, my tumors had to score well on the oncotype dx test. This test required little physical exertion on my part other than to give consent to further biopsy the tumors and to be prepared to battle insurance carriers for coverage. The oncotype dx was expensive ($10K) plus it had heretofore been prescribed only for lymph node negative breast cancer. Since I was lymph node-positive, Dr. Hershman felt the insurance company might balk. But, she endorsed the test anyway because the cancer in my lymph node was but a speck, and the oncotype dx was cutting edge and on the brink of branching out to early stage lymph node positive, and, she said, Genomic Health, Inc. offers other forms of financial assistance. Above all else, she felt the test was valuable. The lab examines twenty-one different genes in the breast tumor tissue to determine the aggressiveness of the cancer thereby informing of the likelihood of return, and the benefits of chemo. She said, “The oncotype dx tells the story of the tumors.”

“YES,” I said, “I want this. Stories are essential. I believe that stories are our best teachers.”

Yes, I consented with my fingers crossed while shouting silent prayers for financial coverage. As it happened, the insurance company did balk but a Genomic Health representative assured me that there would be an insurance process of denial and resubmission that they would handle, and that I need not worry about money (powerful healing words). The tumor specimens were delivered to the lab, the results would be ready in roughly a month. All I had to do was wait.

Meanwhile, the good Dr. Hershman prescribed a heart test to determine whether my engine was fit for the T/C track.

My fierce, right-angled, rebellion fills up an entire journal page – TC chemo is hard on the heart and tough on the immune system – Why? would I opt for that??

And yet, I went for the test because I was only gathering information, plus I was curious about my heart. I’d been so focused on worldly stress – finances, career and academic disappointments – that I’d lost sight of my passions. I wasn’t sure how hard my heart was beating anymore.

This is the report in my brown suede medical journal on the day after the test:

The learning is exciting. All teaches me: the fear, the friends, the intricate weave of the drama. Like moving to a foreign land, my every sense is on alert (in the hospital) to find my way.

The echocardiogram experience was interesting. It was essentially a sonogram of the heart. I think of the blips on the graph on the screen, the pixilated blob deflating and inflating, the whoosh squoosh sounds of what I was informed was the rushing of blood through the valves, and I am awestruck by the life force.

I said to the pretty technician, “It’s more fun to see a baby on that screen.” Then reneged. “But I guess it’s equally great to see that it (my heart) is pulsing.”

[This is not in my journal: part of the reason I reneged was that there was more story behind that comment than I cared to share with a chilly echocardiogram tech. In 1996, a black hole on a sonogram screen informed Reade and me that our first pregnancy had spontaneously terminated. That was one of only two times that I’ve witnessed my husband cry. Then, almost a year later, a squirmy little being with a heart as loud as a stomping T-Rex appeared on another sonogram screen, and my hardened heart began to beat again that day. I relived that moment during the echocardiogram, and, in a flash, had a lump lesson revealed on to me – I love my baby, true, and now I love me too.]

Back to the journal entry re: my pulsing heart:

Yeah. It’s amazing to be made aware that there are parts of me – vast & powerful & highly energized parts of me – that are alive without me (my talking mind) directing them to beat, breath, and so on. There’s so much more of me than my thoughts.

The tech by the way was more than pretty. She was a light-skinned, dark Spanish beauty, an Earth goddess – very solid and capable – and way too serious. Maybe she sees hearts everyday and so she doesn’t marvel at the life force? Maybe her heart aches for someone? Maybe she protects her heart and just does her job while she’s in her blue uniform and responsible for taking pictures of every chamber and valve?

Every time I go to the hospital I meet such courageous and kind people. I’ve been loving the people at Columbia Pres. just loving them.

Joanne the adorable and extremely sweet echocardiogram receptionist, secretary, defender of the pre-certs. She was able to soothe my soul after some insurance referral agitations, thereby stilling my heart before the test. Then there was the hilarious elderly Jewish lady, apparently a regular on the floor, who spoke Spanish rather than Hebrew because “Oy, Hebrew is so hard it should be left for the Rabbis.” Then there was another elderly lady that lost her way to the sitting room. I pointed her in the right direction and she squeezed my elbow with such force – a vehement thank you – that I felt she had inoculated me with ultra good vibes.

There are so many heartthrob stories in wheelchairs and on gurneys in the lobby, on crutches or toting oxygen tanks on the elevator, wearing uniforms, or smiling behind the reception desks. I am so touched by the kindness and the courage of patients and staff – the hospital has shown me that my heart is beating before I even took the test.

(to be cont.)

In awe,

L.

Read Full Post »