But what happens on February 3rd?

A screengrab of a video by the tourism website of the state of Pennsylvania shows the groundhog Punxsutawney Phil being watched for signs of his shadow.

NPR reports on Punxsutawney Phil’s prediction of an early spring.

What’s my favorite holiday? After Thanksgiving, it’s . . . Groundhog Day. And if, like me, you’re a fan of redemption movies—and of Bill Murray—then today you watched Groundhog Day . . . again . . . and again. . . .

It's always February 2nd - ThisIsAuthentic.com

Click to relive Bill Murray’s day . . . over . . . and over . . . and over. . . .

My favorite part of this perennial movie is near the end, when Phil—Connors, that is—finally gets it. He starts living—and giving—in the ever-present moment. He hasn’t yet escaped the never-explained time warp he has somehow found himself in; but in time (whatever that means), he accepts his fate and eventually lives a perfect day that only close to infinite re-dos could have made possible as he learns life’s most important lesson. And yet . . .

What is a “perfect” day? The message of the film is that this Scrooge-like guy learns about becoming his best self through genuine interest in and compassion for others—all with a comic and romantic twist (not unlike Bill’s other redemption movie, Scrooged).* His reward for a lesson well learned and a life well lived on February 2nd?

February 3rd.

But on the other side of the screen, we don’t get infinite re-dos. We ordinary mortals need to learn as we go through linear time, not when we’re stuck in an endless loop of it. So how do we learn to live a “perfect” day on February 3rd after learning the lessons of our own February 2nd?

My personal February 2nd, so to speak, was actually on Valentine’s Day 2014. I underwent my last vaginal radiation treatment (brachytherapy) that day following a total hysterectomy for uterine cancer on December 13, 2013. And I was still in the “glow” of having survived a brush with mortality and having learned my lesson that all moments of life are precious and, in their own way, eternal. Or are they? This is a topic for another day, but perhaps all moments of time exist somewhere, in some treasure vault that we can revisit . . . and revisit . . . and revisit—if we learn the combination or find the key. So if the cosmos is filled with all the energy that has ever existed, why not make our contribution positive?

But what if we become disillusioned because we can’t unlock all the secrets of the universe? Such reflections brought me to the realization that, at least in human terms, the most important secret of life is the one Phil learns in the movie. And this thought took me back to the lyrics of the 1967 song by the Youngbloods, “Get Together,” which may hold the deepest human secret:

You hold the key to love and fear
All in your trembling hand
Just one key unlocks them both
It’s there at your command

In an awesome and happy coincidence, when I wrote an earlier version of this post last year, a quick search for those lyrics took me to the February 3, 2015 page on the Huffington Post blog, “The Third Metric,” where that very song happened to be featured that day: “Daily Meditation: Get Together.” Such coincidences seem to point to a cosmic connection, one that I don’t pretend to understand. Yet these occurrences whisper to me that perhaps we do hold a key that unlocks the secrets to at least our private universe.

In the afterglow of that “Whew! Narrow escape!” feeling post-op and post-radiation, I am still figuring out how to incorporate the lessons of my own February 2nd into my February 3rd. Learning how to do this will require me to be awake, aware, and appreciative during all the coming days until I run out of them. And it’s extremely hard.

Maybe tomorrow, on February 3rd, it will be enough for me to realize that aftermaths and interims are just as important as great events. Or maybe they are the great events. Life is still happening in an amazing way, even when we can’t quite feel the miracle of it after an emergency or a major event has melted into the rest of our experience.

Life transitions often feel shallow, muddy, confusing, unfocused, unimportant. But without the respite from urgency that we experience during exciting or traumatic times, we wouldn’t have the chance to dive deeper into our own being. These times spent in semi-mist may actually be mystical. Change is creative. So transition isn’t really a dark place to be feared or avoided, but a space offering a chance to learn and become your own next great thing. As earth transits around the sun, transition is how we experience time . . . and all the times of our lives.

Alone in my personal space, I will celebrate February 3rd, knowing that the ice crystals on the trees will become leaf buds . . . in time. I hope you will never be stuck on February 2nd and will have quietly wonderful February 3rds to look forward to for many years to come.

*And speaking of redemption stories . . .

Ghost of Christmas Past

Ghost of Christmas Present

Ghost of Christmas Yet to Come

Happy New Year from “The Patient’s Path”

Dec31

Blue Globe_Happy New Year 2016_Middle_Reduced

Dear Readers,

Thank all of you for following our sister site, The Patient Path, since its inception in November 2013, when I began my journey with Uterine (Endometrial) Cancer. That site is now dedicated to cancers, particularly those affecting women.

Please continue to visit this site, which covers a variety of health and healthcare topics, and our sister cancer site throughout 2016 for more information, insights, and inspiration for becoming the most important member of your healthcare team as you embark on your own journey with gynecologic cancer and with other challenges to your health and well-being.

As we say farewell to 2015, I wish all of you around the world the best of the rest of the holiday season and much HEALTH, happiness, and prosperity in the new year.

Pamela Bond Contractor

My favorite story, A CHRISTMAS CAROL, was published 172 years ago, on December 19, 1843. Click the book to view the only manuscript version of the novella, which is housed at the (J. Pierpont) Morgan Library & Museum in New York. Do take a look—it’s a treasure. And click these links to read my reflections of two years ago while undergoing treatment for Uterine (Endometrial) Cancer:

My Current Story, Update: Uterine (Endometrial) Cancer No More: Emotional Reflections in Blue Places –December 18, 2013

My Current Story, Update: Uterine-(Endometrial) Cancer No More: Lessons from the Ghost of Christmas Past –December 19, 2013

My Current Story, Update: Uterine (Endometrial) Cancer No More: Lessons from the Ghost of Christmas Present – December 24, 2013

My Current Story, Update: Uterine (Endometrial) & Skin Cancer No More: Lessons from the Ghost of Christmas Yet to Come – December 31, 2013

My Friend’s Story – Leukemia: Update on Her Family

Dec11

SANDEE & MITCH KLINE

Last evening, as I was writing a fictional story based on my childhood, I received a long-distance telephone call from my real childhood friend’s daughter in Israel. She has kept in touch with me over the past five years since her mother, whom I had known since we were seven years old, died of leukemia in the fall of 2010. Each December 6, Sandee’s birthday, I post a remembrance of her, as I did again this year. Not that I need reminding . . . I don’t feel that Sandee ever left. She may be somewhere where we can’t hear her stories or her laughter, or benefit from her compassionate listening or offers of comfort; but I believe that everyone who was close to her can still feel her in their heart and soul. I can. And occasionally she even visits me in a dream. The only thing I don’t like about this is that I have to say goodbye again, and her presence in my slumbering brain reminds me that I could do nothing—absolutely nothing—to help her when she was so sick. That’s something I can’t forgive life for—not letting me do somethingF

After a minute or so of catch-up conversation on the phone last evening with Sandee’s daughter, I happened to ask about one of her brothers, who also had moved to Israel. After a silent pause, I heard the ominous words that the family had undergone yet another major shift: her brother had moved back home to Philadelphia to become the primary caregiver for their father. Mitch, who remained a warrior against leukemia and lymphoma—blood cancers that stole his wife, mother, and mother-in-law from him and from the people in their lives—is now fighting on his own behalf against stage 4 brain cancer. He is recovering from surgery, chemo, and radiation at home, cared for by his son and other close family members and friends.

This morning, I awoke to that heavy-hearted, semi-shocked feeling that stuns you back to the reality that an act of God or nature has just torn another hole through your world. I don’t have many details about Mitch at this point, but I am following updates on Facebook and remain in touch with several members of his and Sandee’s family. People local to the Philadelphia area may be interested in the “Lotsa Helping Hands” site—Pitch in for Mitch—which provides updates and information on how to give support (signup is required; mine is pending at this writing).

Links to leukemia and lymphoma sites are at the end of this post. In addition, people local to the area may be interested in the Philly-based Mark Roy Crespy Chapter of the City of Hope, organized by members of Sandee’s family in memory of her brother, who died at about age 11 from bone cancer.

In two days, on December 13, I will celebrate my second anniversary of being successfully treated for uterine cancer. On that day, Friday the 13th, 2013, I underwent a da Vinci robotic total hysterectomy, followed by vaginal radiation (brachytherapy). My recent checkup showed no evidence of recurrence, and I also just had a mammogram that was clear. (See complete information in Uterine Cancer: My Story & More.) I say this in humility and gratitude, even as I feel the pain of loss suffered by the family of my oldest and dearest friend (she still is).

Much progress has been made in treating cancer. But as my friend’s story shows, it is still leaving broken bodies, minds, and hearts in its wake. At the first sign that anything is wrong with your own or with a loved one’s health, please consult a medical practitioner. Early detection of this insidious disease may save your or your loved one’s life.

The following story was originally posted on December 6, 2013.

SANDRA CRESPY KLINE

12-6-52 — 9-27-10

I met Sandee Crespy when we were both seven years old. We were in the same second-grade class at Ziegler Elementary School in Northeast Philadelphia. Although we had almost distinctly opposite personalities and, on the surface, not much in common, we nevertheless went through four schools together—after Ziegler it was Fels Junior High, Lincoln High, and La Salle College (now University), all in Philly. Our early careers also took roughly parallel paths—she was a legal secretary, I was a medical secretary. I was a bridesmaid at her wedding when she married her high school sweetheart, Mitch Kline, and she was the matron of honor at my wedding when I married my second husband, Farok Contractor, on December 7, 2003. After we graduated college—it took her 18 years of night school, me 11—she went on to become a CPA, and I became an editor-writer. Eighteen years may seem like a long time to go to college, but she and Mitch had three amazing children (Alyssa [Malka], Evan, and Jeffrey) while she also pursued her career and studied—and, of course, socialized with her many friends. (My son, Matt, was born about a year after I finally graduated while working full-time, so I had it a bit easier.)

This synopsis tells you very little about how and why we managed to retain a friendship over 50 years. To give you some idea of that relationship, you can read a brief remembrance I wrote about us in 2012 as an exercise for my writing group: An American Friendship—Associated Memory. In that mini-memoir, you’ll see that I mentioned my recently found sister, Vicki Sue, who was reunited with her maternal family 50 years after we were separated (read her story here). However, the connection is very important because just about a year after we found Vicki Sue, we lost Sandee to her deadly battle with leukemia. But not before the two of them had the chance to meet the previous October. Although Sandee had two lovely sisters, Ronnie and Jackie, you might have thought she’d found another one of her own. (She also had two brothers—Scott, who is doing well, and Mark, who died very young of bone cancer.) Of everyone I knew, she was the most thrilled that Vicki Sue had re-entered our lives—particularly because Vicki had been raised Jewish!

Sandee’s Jewish background was one of the things that had attracted me about her the most when we were young. She came from a big family—Ashkenazy on her mother’s side, Sephardic on her father’s. This mix of Russian and Spanish ancestry may be one of the primary reasons a bone-marrow donor could not be found to save Sandee’s life, despite her myriad of relatives on both sides. But my larger point is that I used to love going to Sandee’s house when we were kids because of all the people—all the life and love—I found there. My family is small and had an unhappier history, so I often took refuge in hers.

In October 2009, my family had its first reunion gathering to honor our finding Vicki Sue. This has evolved into an annual Oktoberfest celebration. But on this first occasion, Sandee joined us—you can see the joy on her face, drinking her last cup of tea in my home:

Sandee and I did share one final cup of tea—at her home in January 2010. She had recently returned from a trip to Israel, where she and Mitch had been visiting their daughter and her family, and thought she’d contracted some sort of bug. Each afternoon she developed a high fever and became very sleepy, so much so that she had to stop working. One snowy January afternoon, I went to see her and took with me a collection of unusual chocolate teas that someone had given me as a gift that I’d never opened. We cracked open the little canisters that day and enjoyed a cup of chocolate tea together. Although she didn’t drink out of “her” cup, which is at my house, looking at that cup brings back these powerful memories of those two last cups of tea we shared:

I didn’t see Sandee again until August 15, 2010, just weeks before she passed. It wasn’t that I didn’t try—I emailed and called her family repeatedly trying to set up a time to visit. But she became sicker and weaker over the ensuing months and was in and out of hospitals, including Johns Hopkins—where our friend Sue and I went for our last girl-thing that August day. The three of us used to get together for our annual fall combined birthday dinner (my day is September 24, Sue’s is November 24, and Sandee’s, of course, was December 6). The last time I spoke with Sandee on the phone it was just a couple of days before my birthday, but she was too ill and too weak to realize it. On September 27, 2010, we got the word from her family that she’d passed away at the local hospital, which was her choice. She was surrounded by her loving family.

Her daughter, Malka, called me and asked me to be one of the pallbearers at her mother’s funeral. I’ve never before or since carried a burden that was so light in my hands and so heavy on my heart.

Click the heart image to read about its significance.

Rest peacefully and as joyfully as you lived, my friend.

See more in Sandee’s memory her e.

* * *

PLEASE SUPPORT THE EFFORT TO ERADICATE BLOOD CANCERS

MITCH’S LEUKEMIA & LYMPHOMA SOCIETY

TEAM IN TRAINING FUNDRAISING PAGE

What happens on February 3rd?

Feb3

It's always February 2nd - ThisIsAuthentic.com

**If, like me, you are a fan of redemption movies—and of Bill Murray—then yesterday you tuned into AMC and watched Groundhog Day . . . again . . . and again . . . and again.**

My favorite part of the movie is near the end, when Phil (also the groundhog’s name) Connors finally gets it and starts living—and giving—in the ever-present moment. He hasn’t yet escaped the time warp he’s found himself in; but he has accepted his fate and lives a perfect day that only infinite re-dos and learning the ultimate lesson could make possible. And yet . . .

What is a “perfect” day? The message of the film is that this Scrooge-like guy learns about becoming his best self through genuine interest in and compassion for others—all with a comic and romantic twist (not unlike Bill’s other redemption movie, Scrooged). His reward for a lesson well learned on February 2nd? February 3rd.

But on the other side of the screen, we don’t get infinite re-dos. We need to learn as we go through time, not when we’re stuck in an endless loop. So how do we learn to live a “perfect” day on February 3rd after learning the lessons of our own February 2nd?

My personal February 2nd, so to speak, was in 2014. At this time last year, I was in the middle of my vaginal radiation treatments (brachytherapy) following a total hysterectomy for uterine cancer on December 13, 2013. And I was still in the “glow” of having survived a brush with fatality and having learned my lesson that all moments of life—even my life, which I have not always valued—are precious, if not eternal.

Or are they? This is a topic for another day, but perhaps all moments of time exist somewhere, in some treasure vault that we can revisit . . . and revisit . . . and revisit—if we learn the combination or find the key.

But what if we can’t unlock all of the secrets of the universe? (Who knows—maybe it’s only one secret.) These thoughts took me back to part of the lyrics of the 1967 song by the Youngbloods, “Get Together,” which I always thought held the deepest human secret:

You hold the key to love and fear
All in your trembling hand
Just one key unlocks them both
It’s there at you command

20150203_103012 (2) In an awesome and happy coincidence, a quick search for the lyrics took me to the February 3, 2015, post on the Huffington Post blog, “The Third Metric,” where the song is featured today: “Daily Meditation: Get Together.” Such coincidences seem to point to a cosmic connection, one that I don’t understand. Yet these occurrences whisper to me that perhaps we do hold a key that unlocks the secrets to at least our private universe.

In the afterglow of that “Whew! Narrow escape” feeling post-op and post-radiation last year, I am still figuring out how to incorporate the lessons of my February 2nd into February 3rd—my reward for having survived. Learning how to do this will require me to be awake, aware, and appreciative in all the days that follow until I run out of them.

On this February 3rd, as I see welcome sunlight turning ice into crystals on the bare limbs outside my window, I guess it is enough for me to realize that aftermaths and interims are just as important as great events. Or maybe they are the great events. Life is still happening in an amazing way even when we can’t quite feel the miracle of it after the emergency or major event has melted into the rest of our experience.

Alone in my personal space, I will celebrate February 3rd, knowing that the ice crystals will become leaf buds . . . in time. I hope you will have a quietly wonderful February 3rd, too.

My Story – Osteopenia: What’s bone loss got to do with uterine cancer?

Sep17

DEXA (Dual Energy X-ray Absorptiometry) Scan

In the August 13, 2014 post, I discussed the second colposcopy and repeat Pap test I’d had the day before. My doctor, concerned about my ongoing vaginal discharge and previous Pap result showing abnormal glandular cells of undetermined significance (AGUS), said he might put me on an estrogen blocker if the repeat Pap also came back abnormal. But before he would prescribe a medication, he wanted me to have a DEXA (dual energy X-ray absorptiometry) scan to check my bone density. It was only after the visit that I realized I didn’t quite grasp the connection between the two. . . .

Bone Density Test & Results

I already knew from a previous DEXA scan a few years ago that I had osteopenia, or bone weakness, which is typical for a post-menopausal woman. So it was with a “just another to-do on my list” attitude that I went to my local mammography center to have a repeat bone-density scan done on August 25.

This painless, noninvasive test takes about 20 minutes or so and is nothing to be nervous about—you’re not even confined in a tube as you are with an MRI. The basic test setup for the phase 1 screening of the lumbar spine (L1–L4) requires that you drape your lower legs over a block with your knees bent and your back flat on the table, as shown in the photo below. (My scan was done using a Norland [CooperSurgical] DXA Bone Densitometer). The scanner passes over your body while you lie still, and the technologist monitors the results right next to you.

For the phase 2 screening of the top of the left thigh (left femoral neck), the under-knee support is removed, and your left leg is positioned inside a sling with your left foot turned slightly inward. (Only one thigh is scanned because it is assumed that an otherwise healthy woman will have the same results in both legs—sort of like blood pressure readings done on only one arm.)

When I was finished, the technologist printed out the preliminary (unread) results, which are based on comparisons with other women in a younger age group and also in the same age group. They looked very much like this:

Sample Bone Density Analysis

An accompanying sheet explained that the results include values called the T-score (which compares your results with those of a young, healthy population) and the Z-score (which compares your results with those in an age- and gender-matched reference population). The T-score is evaluated according to criteria established by the World Health Organization (WHO):

a score of –1 or above (0 to +4) is normal (adequate bone density)
a score between –1 and –2.5 indicates osteopenia (reduced bone density)
a score below –02.5 indicates osteoporosis (severely reduced bone density).

A disclaimer reads: “Although very useful, this test is not the sole determinant of bone health” and goes on to list other risk factors, such as family history, nutrition, physical activity, and others.

Osteoporosis was defined by the World Health Organization in 1994 as a T-score that is 2½ standard deviations below the mean or LOWER THAN -2.5.

My results: Lumbar spine (L1–L4)—T-score = –0.96, Z-score = –0.32. Left thigh (femoral neck)—T-score = –2.02, Z-score = –0.30. “Impression: Osteopenia. Patient is at medium risk for fracture.” In other words, osteopenia, as defined by WHO, “is 10% to 25% below peak adult bone mass, or a T-score between –1.0 and –2.5 standard deviations below normal. Having a T-score between –1.0 and –2.5 is not ’pre-osteoporosis,’ but it is very important for people with low bone density to develop a good plan to prevent bone loss and osteoporosis.”

A T-score of -1.0 to -2.5 signifies osteopenia, meaning below-normal bone density without full-blown osteoporosis. This stage of bone loss is the precursor to osteoporosis.

The radiologist’s report recommended weight-bearing exercises, calcium, and vitamin D supplements. My doctor’s office subsequently called and said I should be taking 1,200–1,500 mg of calcium per day and at least 800 international units (IU) of D3, although my family doctor had previously recommended 2,000 IU. (Vitamin D for bone health is usually sold as vitamin D3, or cholecalciferol, a metabolite of vitamin D that helps your bones absorb calcium; see the resources below.) The doctors did not recommend any bone-health medications at this point.

Bone Scan Results & Uterine Cancer Follow-up

While waiting for the Pap test and DEXA scan results last month, I sought out more information on estrogen blockers in case my doctor decided to prescribe one to reduce my risk of recurrent cancer following my hysterectomy and radiation treatments (vaginal brachytherapy) last winter. A quick Internet search at the time led me to assume that my doctor would most likely prescribe anastrozole (Arimidex) or tamoxifen (Nolvadex), drugs that are often used to treat breast cancer. The thought of taking a “cancer” drug didn’t appeal to me because of side (and psychological) effects; but then I was still concerned that a second Pap report might show abnormal results.

However, as discussed in the August 21, 2014 post, the follow-up Pap was normal (whew). Nevertheless, I still did a little more poking around the Internet to see what I could find out about estrogen blockers. I also wanted to understand the relationship of these drugs to bone loss after I received my DEXA scan results showing osteopenia. What I discovered was that the biochemistry of the drugs used to treat or prevent recurring cancer and those used to treat bone loss is fairly technical and confusing. At that point, I concluded that I could not be sure that my original assumption of what my doctor would probably have prescribed was correct.

Briefly, anastrozole (Arimidex), a nonsteroidal drug approved for treating breast cancer after surgery, as well as metastasis in both pre- and post-menopausal women, works by inhibiting the aromatase enzyme. This enzyme is involved in synthesizing estrogen and can therefore increase the severity of breast cancer—and, of course, uterine and other gynecologic cancers—if left unchecked. However, bone weakness has been associated with anastrozole use, and women who switched to this drug after taking tamoxifen for two years reported twice as many fractures as those who continued to take tamoxifen.

Tamoxifen (Nolvadex or a different brand), which is on WHO’s List of Essential Medicines, inhibits estrogen production in breast tissue, acting as an estrogen antagonist. In other tissues, such as the endometrium (lining of the uterus), however, it behaves as an estrogen agonist (a chemical that binds to a receptor and activates it to produce a biological response). Tamoxifen’s tissue-selective behavior directly led to the concept of selective estrogen-receptor modulators (SERMs), and by the time I read this I started getting lost in the science—especially because I no longer have a uterus. But it was still interesting to read that, unlike anastrozole, a beneficial side effect of tamoxifen is that it prevents bone loss.

Blockers, Bones, Birthdays . . . & Babes

The next time I see my doctor, which is not until November, I plan to ask him about the relationship between prescribing an estrogen blocker and getting a DEXA scan to ascertain the presence of bone loss. At the time of my last visit, he jumped from one subject—estrogen blockers—to another—DEXA scan—without explaining the connection. A number of thoughts have gone through my mind since that time, especially after doing some research. I strongly recommend that readers start with the resources listed below to learn more—and then discuss the use of estrogen blockers and/or treatments for osteopenia or osteoporosis with their doctor before making any therapeutic decisions.

In the meantime, I am taking advantage of the nice weather to do a little more walking and have increased my calcium intake as I continue to take my D3. Degenerative changes in the body are inevitable, and as I approach my 62nd birthday next week I am mindful that I need to learn to age gracefully. After all . . . after all the cancer treatments and so much else . . . the point is that I am still getting older.

This is the first birthday in years that I have not actually minded.

For more information about my uterine cancer story, click here.

Take a look at some of the people I’m keeping company with on Pinterest.

Damn right, Dame Judi .

Resources

American Bone Health – How We Diagnose Osteoporosis—Understanding the Bone Density T-score

BoneDensitomers.com – About Bone Densitometry

4BoneHealth.org – Expert Insights on Osteoporosis (Also see WHO below)

– World Health Organization – WHO Criteria for Diagnosis of Osteoporosis

LiveStrong.com – Do You Need Vitamin D3 When Taking Calcium?

Mayo Clinic

– Bone Density Test

– Osteoporosis

– Osteoporosis Treatment: Medications Can Help

National Institutes of Health Office of Dietary Supplements – Vitamin D Fact Sheet for Consumers

National Osteoporosis Foundation – Get the Facts on Calcium and Vitamin D

University Health News (UHN) Daily – Bone Density Chart: Understand Your Bone Density Scores –T-Score Bone Density Chart

UpToDate.com – Patient Education: Osteoporosis Prevention and Treatment (Beyond the Basics)

VeryWell.com – Orthopedics

– Osteopenia – What You Need to Know

– Overview of Osteoporosis

Vitamin D Council – What is vitamin D?

WebMD – Osteoporosis Health Center

–DEXA Scan (Dual X-ray Absorptiometry) to Measure Bone Health

– Osteopenia Directory

– Osteoporosis Health Center

– Picking the Right Osteoporosis Medicine for You

Wikipedia

– Anastrozole (Arimidex)

Estradiol

– Selective estrogen-receptor modulator (SERM)

– Tamoxifen (Nolvadex)

– Vitamin D

– Cholecalciferol (Vitamin D3)

World Health Organization (WHO) – Model Lists of Essential Medicines (Also see 4BoneHealth.org above)

Do you always have to do what the doctor says? Part 2: When the answer may be NO

Jun17

Informed decisions require weighing all factors.

Don’t get caught in a bubble of confusion—

you might not escape (at least not on foot).

In Part 1, When the answer is YES, I promised to tell you the story of a time seven years ago when I did what a doctor told me to do and never should have. This is a long post that contains much important medical information, not only about my specific problem—a ruptured tendon in my foot requiring reconstructive surgery, but about what caused it—overuse of prednisone.

But the larger problem was this: I failed to follow “The Patient Path” to informed decision-making regarding my own healthcare and well-being primarily because I was busy . . . and I was impatient and just wanted to feel better and get on with it.

This mistake is partly the reason I started this blog last November, after learning that I had endometrial (uterine) cancer—to help myself and others learn to make good healthcare decisions. Don’t let others—even experts—make decisions for you without your full knowledge and informed consent.

By all means get expert advice—but always do your homework before following it.

THE MISTAKE

As a result of not being on “The Patient Path” of informed decision-making back in 2007, I suffered serious consequences after following the advice of an uninformed physician. A friend visited this doctor recently, and, sadly, it sounds as if he is still in the dark about some things—and chooses to stay there. At the time I was his patient, he proudly proclaimed himself to be a non-computer-user. He said the same thing to my friend recently. As it turned out in my case, though, he also didn’t seem to know his way around Gray’s Anatomy—the print version of the classic medical text. But his attitude was just one of the problems that caused me to come very close to not being able to walk again.

It started in October 2004. It had been just 10 months since my second marriage and move to Flemington, NJ and only days before my business trip to Varenna, Italy, a charming town on Lake Como. I was heading there to attend an early planning meeting for an academic conference the following spring. Despite the challenges of organizing a scholarly meeting of biochemists in Europe and also preparing to become the developmental/managing editor of the book based on the conference topic of the essential nature of water, I had a lovely stay. Except for one thing: I was limping around town because of a pain above my left ankle.

After returning home, I consulted an orthopedic surgeon that specialized in hands and feet. He diagnosed tendinitis and referred me to a rheumatologist. I wish he had referred me to someone else, because less than three years later he had to refer me to an orthopedic surgeon for a specialized foot-reconstruction procedure.

I am not an uninformed or unintelligent person. Yet I made a bad mistake based on (temporary) ignorance and impatience. I was too busy—too busy learning to become a second wife in a new house in a new town, too busy organizing academic conferences and editing scholarly books, too busy trying to find time to do something other than what I needed to do for everybody else—to take care of myself. So I turned my care over to a doctor that gave me prescriptions that, after trial and error, made me feel better. But he also gave me some very poor advice. Sadly, I was too busy to do my homework, leaving me unprepared to make informed decisions about my own health.

The working diagnosis back in January 2005 was inflammatory vs. osteoarthritis or tendinitis of the left ankle. I also had, and still have, osteoarthritis of the knees. Although tendinitis seemed to be the diagnosis the doctor was working with, the ankle is not as common a site for this condition as, say, the shoulder, elbow, or wrist.

I mentioned prescriptions. The rheumatologist experimented with the following drugs:

6 NSAIDs—nonsteroidal anti-inflammatory drugs, including

Etodolac (Lodine), 300 MG twice a day
Sulindac (Clinoril), 200 MG twice a day
Oxaprozin (Daypro), 600 MG twice a day
Diclofenac Sodium (Voltaren), 75 MG twice a day
Nabumetone (Relafen), 750 MG twice a day
Piroxicam (Feldene), 20 MG three times a day

2 DMARDs—disease-modifying anti-rheumatic drugs, including

Hydroxychloroquine (Plaquenil), an antimalarial, 200 MG twice a day
Leflunomide (Arava), 10 MG once a day

2 Antibiotics, including

Doxycycline (Vibramycin), a tetracycline antibiotic, 100 MG twice a day
Sulfasalazine (Azulfidine), a sulfa anti-inflammatory related to an antibiotic, 500 MG twice a day

And the biggie and baddie: A corticosteroid (prednisone), 5 MG twice a day, which I unfortunately took for two-and-a-half years. This was the big mistake.

With the doctor’s knowledge and encouragement, I also tried several supplements, two of which worked for my knees (and that I still take), but not for my ankle, and two of which didn’t work for my knees or my ankle:

Glucosamine/Chondroitin / MSM (methylsulfonylmethane) twice a day—this has helped my knees
Omega-3 Fish Oil 1200 MG twice a day—this also has helped my knees, and is also good for the heart
SAM-e 200 MG twice a day—I couldn’t tell whether this helped back then
Avosoy ASU (Avocado Soybean Unsaponifiables) 300 MG once a day—I also couldn’t tell whether this helped back then

Over the course of treatment from winter 2005 through summer 2007, we tried all of the above prescriptions and supplements and discontinued most of them because of ineffectiveness and/or side effects, including gastrointestinal (GI) symptoms (particularly gastritis, which was exacerbated by the NSAIDs and is a condition I still have); increased tinnitus, which is often affected by medications (and is also a condition I still have—see the May 19, 2014 post); and ankle swelling.

Two years after I started treatment, while still experimenting with these various drugs, I took a trip to India that winter with my husband to visit his homeland. We were gone a month. After getting back home, I decided I would try exercising that ankle more to strengthen it. It seemed to be working, but by the spring it was obvious that something was wrong. One day while out walking, I felt a smart snap of pain. That was the beginning of the end of my ability to walk normally.

My left foot started collapsing inward, my ankle tilted toward the floor. I was limping markedly. I went to the doctor and said, “Look at my foot! I’m crippled!” He replied, “I don’t disagree with you.”

THE LESSON

In response to my repeated questions about the potential side effects of taking prednisone for so long, the doctor would always say that I wouldn’t experience any harmful effects at such a low dose—10 MG a day. Because I was “too busy to take care of myself,” even too busy to fully investigate the ramifications of taking a corticosteroid for more than two years (the recommended maximum timeframe is about two weeks), I allowed myself to be influenced by a doctor who told me he refused to use a computer. Yet I myself didn’t take advantage of a piece of equipment I used every single day for my own work, and I failed to research prednisone sufficiently for myself.

In retrospect, I can’t explain this avoidance behavior on my part, but that’s what it was: Getting the information I needed to make an intelligent, informed decision just seemed like too much work when I was already overburdened. I paid for this lack of decision-making—and it was a high price.

In April 2007, I finally started getting concerned about taking long-term prednisone and decided to stop, cold turkey. DO NOT EVER DO THIS. This was one of the stupidest mistakes I made. Abrupt cessation of a steroid can result in adrenal insufficiency, a condition in which the adrenal glands more or less shut down after steroid use because the drug has taken over the glands’ natural function. Steroids must be tapered off according to a gradual schedule to give the adrenals time to recover and start producing cortisol on their own again. Also called hydrocortisone, cortisol is the principal hormone secreted by the adrenal glands and serves as an anti-inflammatory agent. It is also involved in the breakdown of protein and fat, activates antistress and anti-inflammatory pathways, and contributes to the maintenance of blood pressure. After abruptly stopping the prednisone, my adrenals weren’t working, and I went into a state of extreme fatigue and could barely get out of bed. So I resumed taking the drug and immediately felt better.

By May, not only was I still taking prednisone, but the doctor injected my outer left ankle with a cocktail of two parts cortisone and one part Novocain, saying it would spread to my inner ankle. He didn’t inject the area of concern because of the extensive arteries and nerves there, reminding me that he wasn’t a surgeon and wasn’t sure he wouldn’t hit one of them. He ordered an ankle x-ray, which was normal. He also discussed putting me on yet another drug, methotrexate, which is frequently used to treat cancer and also rheumatoid arthritis. Like prednisone, however, this drug has many serious side effects, and he decided against prescribing it for me because he expected I would be one of 10% of patients that experience GI problems (and I already had gastritis). He advised me to start walking again gradually as the ankle felt better after the injection, which, he said, should provide relief for up to three months. But it didn’t provide relief for even three minutes.

When I saw him a couple of weeks later, he advised against a second cortisone shot because I reported somewhat less pain, although this was because I had been resting. Also, my foot, ankle, and calf were somewhat swollen and deformed. He also reminded me that he wasn’t comfortable injecting near arteries and nerves. I continued to suffer over the following weeks. He had no blessed idea what was wrong with me.Finally, the rheumatologist and I both agreed that I should get a second opinion at the University of Pennsylvania because he thought he was “missing something” (!). But I had to wait several weeks for an appointment. In the meantime, I had to continue the prednisone so I wouldn’t experience another shutdown of my adrenals, but I would have to wean off of it when I found a solution to my foot pain.

He also ordered an x-ray, which showed nothing. So in early July, he sent me back to the original orthopedic doctor, who ordered a magnetic resonance imaging (MRI) study. This showed a big something: I had a totally ruptured posterior tibial tendon, resulting in an extreme case of flat foot—my inner ankle was almost touching the floor because the tendon that is responsible for creating the arch had torn completely. Overweight women (guilty) are at an increased risk of developing this condition, in which the tendon tears and the foot gradually rolls inward and flattens.

MRI disk in hand, I belatedly consulted the second rheumatologist at the University of Pennsylvania, both because I wanted to understand what had happened to me and because my rheumatologist “needed help diagnosing inflammatory arthritis.” This diagnosis would have supported his decision to keep me on prednisone. However, the second rheumatologist saw “no clinical findings of systemic inflammatory disease—no swelling, tenderness, stiffness, or AM stiffness lasting more than 1 hour and no findings on hand palpation of rheumatoid arthritis.” She further said that the ruptured left posterior tibial tendon “could have been caused by prolonged use of steroids (prednisone), untreated tendinitis, excess weight, and flat-footedness.” She was uncertain whether long-term use of NSAIDs could be a contributing factor, but I had to stop them anyway because of the gastritis. Her official diagnosis was “(1) osteoarthritis (wear and tear arthritis) of the knees and (2) tendinitis with rupture of the left posterior tibial tendon, with no evidence of arthritis, inflammatory or osteo.”

When my original rheumatologist called me after getting the letter from the second rheumatologist, he continued to defend his decision to keep me on prednisone. When I reminded him that she saw no clinical evidence of inflammatory disease, he said her letter “wasn’t so emphatic, and some information got lost within it.” He offered to be in the background to run questions by. My impression was that he was probably worried about a possible lawsuit, although I had no intention of putting myself through that in addition to everything else. And it would be very tough to prove malpractice.

The local orthopedic surgeon sent me to the chief orthopedic foot and ankle surgeon at Penn. Both orthopedic doctors had asked me to stand against the wall and lift myself up on the toes of my left foot. Not only could I not do this, my brain didn’t even seem to be getting a signal that such a thing was possible. (I was able to lift myself up on the toes of my right foot.) The Penn surgeon told me that my choice was to wear a leg brace for the rest of my life or to undergo reconstructive foot surgery. When I called my rheumatologist, he said he wanted to ask the surgeon to do a biopsy to confirm inflammatory disease. The surgeon later said he would look around the ankle area at the time of the procedure, but he would not do an unnecessary biopsy.

On July 31, 2007, I underwent a tendon transfer and calcaneal osteotomy of my left foot at Penn-Presbyterian Hospital in Philadelphia. A tendon was removed from the outside of my left foot and transferred to the inside ankle region (leaving me unable to move the outer toes of my left foot). The outside of my left heel bone (calcaneus) was cut and moved over about 1 centimeter toward the inner ankle to better support the repaired tendon. It was held in position with a 2-inch screw (which is still in my heel). For at least six weeks, I would not be allowed to place any weight on the foot. This procedure is considered the most common treatment for this condition and offers highly effective results with a low risk of recurrence. But try using the bathroom balanced on only one foot. . . .

When I reported all this to my rheumatologist, he continued to assert that this “shouldn’t have happened,” and he wanted to know what the operative and pathology reports said, still groping for evidence of inflammatory arthritis. There was none. He reminded me that he wanted me to reduce the prednisone at one time, and I reminded him that he repeatedly told me that such a low dose would not result in any side effects and that he had never told me it would weaken my already compromised tendon. His response was that he wondered why prednisone affected only this one tendon. (Maybe because I had tendinitis there?!)

Then, unbelievably, he further said that he couldn’t even find the posterior tibial tendon in his anatomy book! Why he would admit this is beyond me, and why to this day he refuses to use a computer is even further beyond me. A 0.27-second Google search of “posterior tibial tendon” today revealed 362,000 hits. A 0.33-second Google search for “ruptured posterior tibial tendon” today revealed 58,000 hits. And a search of Google Images reveals a multitude of photos and drawings of my condition and surgery: Google – Ruptured Posterior Tibial Tendon Condition & Surgery Images. Shame on you, Dr. No-Compute.

IN CONCLUSION

After surgery, my family doctor managed my prednisone taper, which took a month and went well. Not allowed to do any weight-bearing whatsoever, I used a wheelchair and a walker for two months. I underwent a couple of cast changes, surviving an extremely painful suture removal along the way. When the second cast was removed, I had a wound infection and needed antibiotics. Then I had three months of physical therapy to relearn to walk. While using the walker on an indoor carpet, I fell twice, injuring my right shoulder and sustaining a rotator cuff tear. Painful and limiting or not, I wasn’t about to have further surgery and learned to live with it. All of this could have been avoided.

Seven years later, I have a noticeable scar on my left foot, and the foot doesn’t feel normal. I may need a different shoe size; shoes may fit my foot differently, causing corns and calluses; I may not be able to do anything athletic (as if I ever could–this is not a problem). But I can walk! Just two months of being confined to a wheelchair gave me much greater respect for the disabled. Getting through life is tough enough without having to learn additional survival and mobility skills. However, I will say that many people were kind to me. In public places, I experienced no discrimination—only help. This gave me some hope for humanity.

But I have little hope for doctors who don’t use a computer. And even less for patients who blindly follow their advice.

I do believe I’ve learned my lesson. And when I discovered I had endometrial (uterine) cancer last November, I realized I had to do things differently.

And that’s how this blog was born. Take good care of yourselves. And walk with confidence. Not with a cast, a cane, or a moonboot.

RESOURCES:

About.com – Arthritis & Joint Conditions: Prednisone—10 Things You Should Know

American Academy of Orthopedic Surgeons – OrthoInfo—Posterior Tibial Tendon Dysfunction

American College of Rheumatology – Information for Patients

American Tinnitus Association – About Tinnitus

Encyclopedia Britannica – Cortisol

American Cancer Society – Endometrial (Uterine) Cancer*

Google Searches:

– Posterior Tibial Tendon

– Ruptured Posterior Tibial Tendon

– Ruptured Posterior Tibial Tendon Condition & Surgery Images

Healthline – Inflammatory vs. Non-Inflammatory Arthritis: What’s the Difference?

HowStuffWorks – Magnetic Resonance Imaging (MRI)

Mayo Clinic:

– Gastritis

– Prednisone and other corticosteroids

– Tendinitis

MedicineNet.com – Nonsteroidal Anti-Inflammatory Drugs (NSAIDS)

MedlinePlus:

– Antibiotics

– Methotrexate

– Tendinitis

National Cancer Institute – Endometrial Cancer

New York Times Health Guide – Exogenous Adrenal Insufficiency

The Journal of Bone and Joint Surgery (Britain) – Ruptured Posterior Tibial Tendon Repair

WebMD

– Arthritis: Disease-Modifying Medications (DMARDS)

– Vitamins and Supplements Lifestyle Guide

* Also see the various blog posts under “My Current Story – Uterine (Endometrial) Cancer.”

“Do you always have to do what the doctor says?

Part 1: When the answer is YES”

Illness Is Not Identity: Butterflies Are Free

Mar31

Butterflies

“I only ask to be free. The butterflies are free. Mankind will surely not deny to [me] what it concedes to the butterflies!” Charles Dickens, Bleak House.

If you’re not familiar with Bleak House, which is one of the most complex–and one of the most rewarding–of Dickens’ novels, perhaps you’ve heard this quotation in Butterflies Are Free, a 1972 film (based on a play by Leonard Gershe) about a young blind man, Don (Edward Albert), who rents his own apartment to become less dependent on his overprotective mother (Eileen Heckart). As she still struggles for control, he meets his neighbor, Jill (Goldie Hawn), a “free spirit” who inspires him to become his own person. After she tells him that the Dickens’ line is her favorite quotation, he writes a song about his spirit learning to fly.

For several years, long before I was diagnosed with and treated for uterine (endometrial) cancer, I have thought of the butterfly as a personal spiritual symbol. Many cultures and traditions turn to this beautiful winged creature to symbolize the soul and other essential aspects of life, such as metamorphosis. Few things top the list of shattering changes more than potentially life-threatening illness. Yet, even when it is serious, illness is only part of our life experience. True, it sometimes commands center stage. But in the next act–or even in the next scene–some other, deeper aspect of who we are takes its star turn.

By no means do I intend to diminish the supreme challenges faced by those who are debilitated by illness or injury or to dismiss uncaringly the anguish of those who have lost loved ones to terminal disease or early death. But the message of the butterfly is available to all, even to those who suffer. Because even if we sprout wings that don’t have the strength to free us from the pain and limitation of earthly life, they can still help our spirits to soar. If we don’t have the strength even for that, our spiritual wings can at least help us float gently on the soft winds of the universe as it continues on its infinite course, reminding us that we are part of all that is, ever was, or ever will be.

Having passed through the metamorphosis of serious illness, I think back to decisions I’ve made that both hurt me and helped me arrive at the place I now find myself. And I’ve had to face that many of the external markers of identity are now lost to time–reproductive status (first in menopause and now in the absence of organs), the joys and responsibilities of young motherhood (my only child is now a man), marriage and name change (one divorce behind me and a total of three last names), the comradeship of friends and colleagues (many losses and gains over the years), the pride and sustenance of career and income (gone and none at present), and so on. These things have shifted so significantly that at times I feel adrift in the cosmos, unanchored to earth or to anything that feels comfortable or familiar.

But these moments pass. And I realize that what remains after pseudo-identity is irrevocably altered is the emergence of what lies beneath and within, which can be surprising. Having lost so much, and having spent so much time alone confronting my very existence, I nevertheless have experienced an integration of the essential aspects of myself with how I navigate external life. I discussed some of these things in the March 14, 2014 post, “Reading & Writing as Therapy.” The message was simply this: Find, or rediscover, what you love. This tells you who you are.

It is my hope for all who face grave or passing illness, permanent or temporary loss, and terrible loneliness or even somber solitude that they can find their butterfly selves by turning inward to where they can see that the outward path is visible but ephemeral–and also by connecting with similarly affected, like-minded others, who can not only share their experience, but enter into it with them.

Just a few thoughts for the last day of March as I prepare to take THE PATIENT PATH in new directions. You may notice within the next few days that the URL for the site is now “thepatientpath.net” since I have just registered this domain name. I attempted to register “thepatientpath.com,” but a domain-name reseller had already snatched it up, I believe because visits to the site have increased recently. I should have acted sooner, a lesson I’m still learning–not only about such things as domain names, but about getting certain problems, such as postmenopausal bleeding, checked immediately (take it from me, ladies, and please reread the November 20, 2013 post, “Uterine Cancer Risk Factors”).

As we go forward, we will be addressing health topics in addition to uterine (endometrial) cancer, and some have already been written about in earlier posts. All topics will deal with health, healing, and well-being on various levels. I also hope that readers will feel free to comment and share their stories.

In the meantime, I plan to enhance the resources sections of the blog for the purpose of self-education and information gathering so that we can all continue to learn how to be the most important members of our own healthcare teams–and the stars of our own lives.

My Current Story, Update: Uterine (Endometrial) Cancer–You Can't Unbreak Glass…but the Fragments Can Be Contained

Mar6

Lessons from a pretty, but fragile, aqua bulb lamp.

This story was updated on March 19, 2014.

Shattered Glass & Fragmented Spirits

Part of my personal treatment plan is to sort through all of my possessions–mounds of them, many of them paper records and memorabilia–and consolidate and clear out as much as possible. This is excruciatingly difficult. I am a collector of personal and business organization books and have poked my nose in most of them, but practical advice disintegrates in the face of emotional attachment to the things that give silent witness to your life. Coming face to face with the reality that our time here is finite has had the effect of making me yearn to locate, categorize, and memorialize “lost” mementos from a past that is quickly slipping away while simultaneously making me want to travel lighter and more open into my future. Most of my efforts thus far have been on the order of redistributing, rather than discarding, these things. But I feel the need to know what I have, and where I have it, before I can take bolder steps–I’m not quite ready for big leaps just yet.

I had just managed to clean up my home office to the point that I wanted to prettify it a bit and get it ready for whatever is next. The story of my career is difficult and painful and will wait for another time. At present, my work–my most important job–is to continue to heal and take care of myself while better managing my immediate environment–not only my physical home, but my personal world. So, despite not having an income, I decided to make a few small investments around the house to raise the level of order, calm, and attractiveness a little. Clearing out one small space or adding one fresh touch has powerful cleansing and lightening effects, and the more I do the better I feel. (That is, until I unearth yet more boxes of stuff–my things from my past and my grown son’s things from his past that he swears he doesn’t want–but I don’t quite believe him.)

A week or so ago, I wandered into Pier 1 and found the desk lamp pictured above, which has a white shade lined with the same aqua color as the pretty glass bulbs. I might not have chosen this lamp in isolation, but I knew it would look good in my existing office, which is painted in calming aquamarine colors. It looked so good in the office that I was then inspired to replace a utilitarian black pole lamp with one that matched the desk lamp. Then I looked at the “light naked” second desk in the office and thought I’d better buy a matching desk lamp while it was still available. So I ordered the second aqua desk lamp online and went to Pier 1 yesterday to pick it up, happy with my decision (a rarity).

Well, maybe because it was Ash Wednesday (although I’m not Catholic or a practicing Protestant), or maybe because I was overwhelmingly fatigued (although I’d slept OK), or maybe because I have a lifetime of careless habits (no “althoughs” here), I came home empty handed. I had expected the lamp to be boxed up, as the others were. But it was bubble-wrapped. The saleswoman gave me an explanation I didn’t quite follow, but assured me it wouldn’t have been wrapped if it weren’t in good condition. Nevertheless, she offered to unwrap it and let me inspect it (they don’t offer discounts for floor models). Everything looked good, and the sales clerk rewrapped it and handed it to me over the counter. I put it on the floor as she came around the counter carrying the shade, asking me whether I needed help getting the lamp to the car. As I was rapidly trying to figure out how to manage the lamp, the shade, and my purse, I turned toward the clerk, and the purse hanging from my left arm knocked the bubble-wrapped glass lamp to the floor, shattering those pretty aqua bulbs.

The clerk called her manager over, and they were very nice about it and ordered me a new lamp, returning this one to inventory as “damaged.” This could have gone another way, but I was grateful that these ladies were so gracious and professional about the situation. I apologized and told them I felt terrible, not because I was leaving empty-handed, but because I had “laid to waste” such a pretty lamp. It had felt so heavy and looked so sturdy with its solid metal square base; but in the end, it was quite fragile.

While thinking with sincere regret about being so impulsive and careless, I reflected on the paradox of sturdiness and fragility–this solid-based lamp had survived the handling of manufacture, transport, and store display for who knows how long and had remained upright and intact until circumstances (me) caused it to come crashing down, shattering its delicate heart. It was painful seeing those aqua shards inside the bubble wrap; but as the sales clerk said, at least the fragments were contained.

This seemed like a good analogy to human circumstances, but with a twist: as strong as life may have made us, and as sturdy as we may be on our own feet, some quirk of fate can knock us down at any time. The difference between a shattered lifeless object and a fractured living soul is what we do about it. The lamp had fallen and couldn’t get back up; it couldn’t be repaired–but I could order a new one. I, too, had fallen, but could get back up; I couldn’t order new body parts–but I could repair my spirit.

Maybe we all have a sort of spiritual bubble wrap around our own fragile parts–we may fall, we may crack; but the fragments can be contained, and our essential selves can remain intact. Our attitudes can shift. Our hearts can heal. Our spirits can revive.

Notes of Gratitude

As I sort through my past, I feel keenly what I have lost. My physical losses are internal and invisible. My nonphysical losses are ephemeral and unseen. But I am thankful that all of these things have been a part of my life. Contentment may not be mine, but as spring approaches and I continue to mend, I realize that although I can’t restore what I once had, I can refresh my life. This is a solitary and mostly lonely process. The flood of support and attention I received at the beginning of my health crisis has become somewhat less as the situation has become the new normal and has been absorbed into my changed life–and other people’s perception of it. But as with the bereaved after a funeral, we are all left alone to cope with grief, loss, and an altered life after everyone goes home, back to their own lives and their own challenges.

Yet support still comes, now in an occasional gentle wave. Any act of kindness or caring is balm to the spirit. My hope for us all is that we can journey through life knowing we have our fellow travelers’ hearts in our hands . . . and that they can be shattered like glass lamp bulbs when knocked off of their (apparently) sturdy base.

Pictured here are two symbols of gratitude:

In an eerie portent of things to come, for my 60th birthday in 2012, my sister, Vicki Sue, gave me a “Kohl’s Cares” package of coordinated pink-ribbon birthday gifts–Kohl’s donates 100% of the net profit to support breast cancer. By doing something caring for me, she was doing a kindness for unknown others. The strange thing was that this scarf wasn’t so “pink,” but more a peachy salmon, the ribbon color for uterine (endometrial) cancer–with which I was diagnosed a year later:

And last week, friend Kathryn and I had a lovely lunch in a local teashop, a very special place, at which she presented me with my first and only official uterine cancer ribbon pin:

Finally, a special thanks to the ladies at Pier 1 for ordering me a new aqua glass lamp. I promise to treat it with care.

A Bit More about “The New York Way”

In my February 20, 2014 post, I described “The New York Way” of delivering radiation treatment post-hysterectomy for uterine (endometrial) cancer and also discussed some side effects of vaginal brachytherapy. My short-term side effects are now subsiding, but about a day after the last post and a week after my third and final brachytherapy treatment on Valentine’s Day, I developed full-blown cystitis (constant irritation and burning on urination) and increased bowel changes (gas, frequent BMs, and some leakage). Apparently, these effects were right on schedule according to some of the online patient information I’ve come across. (I’ll update the technical information in a future post.)

Back around the winter holidays, starting a week after my hysterectomy, I had a bout of lymphorrhea, as discussed in the January 10, 2014 post. To make sure I didn’t have a fistula between the bladder and vagina, my surgeon had prescribed a “dye test” using phenazopyridine (Pyridium), pills that turn urine orange–and are also used to soothe the urinary tract for patients with an infection. (I passed the test–no orange showed at the top of the test tampons, and the lymphatic leakage stopped soon after.) I don’t know why, but he had given me several refills of the pills, so (without calling anyone) I went to the pharmacy and got more Pyridium to treat my cystitis. Note that these pills do NOT kill the microorganisms that cause UTIs, but I didn’t have an infection–just burning from the radiation. I took the pills for a week, and they did indeed help. I no longer have burning. The bowel issues have also improved.

What hasn’t improved much is the fatigue, which is worse some days than others. Often, it is related to exertion as I become a bit more active, but not necessarily. I am also waiting for the longer-term side effects to set in and believe I am just starting to notice some of those effects now. But I will discuss these in detail after my first post-radiation checkup, which has been pushed back from March 17 to March 25, when I will also have my first three-month surgical checkup. At that time I’ll know more about radiation effects and how to manage them and will also discuss more of “The New York Way” with my doctors as I continue to read and learn more about different treatment models.

But what’s on my mind now are effects that aren’t physical and healing that isn’t allopathic.*

*A system of medical practice that aims to combat disease by use of remedies (as drugs or surgery).

My Current Story, Update: The Art of Waiting

Jan12

Click: A Few of My Favorite Things_#1

Some of my favorite ways … to spend the time of my life.

Click: A Few of My Favorite Things_#2

Waiting . . . something everyone who has ever lived has had to get used to. Actually, it’s the stuff of life.

The thing is, the inertia of waiting is only a perception. Because while you’re waiting for one thing, another thousand things are going on. At certain times, of course, such as when you’re waiting to get the stitches removed from your head two weeks after having a skin cancer removed from your scalp or waiting to get your first vaginal radiation treatment after a total hysterectomy for uterine cancer, your focus tends to gravitate toward “the thing” that looms so large on the horizon. This is your emotional reality, though, and not a fact that the rest of your life stops and will resume again after “the thing” is all over. I think Franklin Delano Roosevelt had it right: “the only thing we have to fear is…fear itself.” This is not to say, however, that many fears aren’t justified. But expending precious life energy on what may or may not happen is a foolish waste of your most valuable resource: time–moments you’ll never get back.

The past few months have brought me many new lessons in how to wait. I received my cancer diagnoses–(1) first uterine and (2) then scalp–in November, but I had to go through a number of steps before I could have the surgeries required to remove the malignancies. Yet, interestingly, I found I was so busy either taking those steps or preparing for the next ones, as well as–and this is important–also giving myself small goals to meet each day, that I more or less accepted the “wait,” sometimes even feeling annoyed that the next procedure was interrupting what I’d gotten involved in. Most of the time, it felt more as if I was making slow but steady progress toward a goal than as if I was an inert, helpless victim of time.

Five days after I received my uterine cancer diagnosis, I started this blog. I poured a great deal of energy into writing and designing it, although I never planned it out. From day to day, I rarely had any notion of what I’d be writing about. But it fell into place fairly well because things kept happening or suddenly occurred to me while I was actively engaged in creating the next post.

Another thing I found myself doing preoperatively was “nesting.” The last time I did this was in the early summer of 1984, just before my son was born. I’d read about this–that instinct, hormones, or temporary insanity often overcomes expectant mothers, who feel the need to “feather their nest” in preparation for the new beloved arrival. Back then, I did things I’d never done before–and have certainly never done since–such as washing the walls of the house and stripping all the cushion coverings from the living room furniture to wash them and collecting all the new baby clothes and blankets to launder them and rearranging the large shelving in the kitchen because this was the only place convenient to bathe the baby and organizing all important documents so we’d be a legally secure family. . . . I’ll stop there. I don’t remember any more–and don’t want to.

Anyway, I found myself doing something similar on my own behalf before I had surgery to remove my no-longer-functioning-and-potentially-deadly reproductive organs. The Sunday before the Wednesday I had the colonoscopy and upper endoscopy and the Friday before I had the hysterectomy, I told my husband, Farok, that I really needed to clean the house. I wasn’t feeling that energetic, but I was compelled to get my nest ready for when I came home from the hospital. I also bought some new nightwear and reorganized the bathroom closet, where I keep things with which to take care of myself. The one thing I had intended to do but never did was food planning, but somehow this didn’t seem too important. As it happened, a couple of friends brought food over that lasted for several meals, which was great.

Now that the surgeries are over, I have the follow-up phase to take care of–the stitches in my scalp come out tomorrow, the vaginal radiation starts on January 23. I won’t lie–I do have anxiety about both and could easily fall into “rumination” and “obsession” mode if I didn’t deliberately turn my attention elsewhere or find other ways to use the power of my mind to help myself. Another mental technique I use to help myself through tough-ish times is to visualize myself acting as either my own parent or my own nurse. Imaging that I am caring for or guiding myself through what’s gotta be done. It really does work.

This weekend I spent more time on the blog and also did some household chores. And of course there was Downton Abbey tonight (poor Anna!), plus all the movies I indulge myself with almost daily. My stacks upon stacks of books are begging to be read, but it’s only been recently that I could start reading again because my attention and energy had all been diverted to matters of health and healing. And while I’m on the subject, I’d say this is a very good time to thank my local reading group at Twice Told Tales / The Moonstone Mystery Bookstore in Flemington, NJ. After I received my radiation schedule on Friday, I had to scramble to find help with transportation to each of my three upcoming treatments at St. Barnabas. Because Farok is leaving for India on professional and personal business next week, followed by a Sierra Club hike in Viet Nam (both planned before we knew what my life would be like–I was actually supposed to go to India as well), I will be on my own at a vulnerable time. So, a big, heartfelt thank you to three of my reading group friends who have each offered to take a turn transporting me to a radiation treatment. And, by the way, I have had very many enjoyable hours thanks to my book group, which has helped me fulfill my lifelong ambition of being a good reader.

My other lifelong ambition is to be a good writer. So here is another opportunity to acknowledge a group I’m very pleased to be part of–my writing group, which meets every other Saturday morning at the Hunterdon County Library. It’s such great fun and so gratifying to get together with creative counterparts who are not only very talented and insightful writers, but great conversationalists and good company. They are helping me make the transition from technical to creative writer, and although I have a long way to go, I’m enjoying the process.

If you looked at my “favorite things” at the top of this post, you’ll see graphically exactly how I’ve been spending my time, or soon will be, as my life slowly returns to normalcy. So, yes, I am waiting for some things to be over with and for other things to develop. But “waiting,” given the right attitude, is really another word for “living.” If you find yourself consumed with worry–or even eagerness–about something that will be happening in your world soon, remember that the entire rest of your life is still going on and needs your attention. If you identify the things you love most and that have a high priority in your daily life and put your focus and energy there, whatever it is you’re waiting for will be here before you know it–and you will have been a productive citizen of your own life while it was on its way.

My Story – High Cholesterol: A Family History of Cardiovascular Disease

Nov27

One more–and one less–thing to worry about: heart disease. Maybe.

We all need to be aware of our family history as we embark on our personal travels through the world of healthcare and health and well-being.

As discussed in the “My Mother’s Story” posts (see this morning’s update), my mother, Marie Bond, had a heart attack in March 2013 followed by cardiac bypass surgery. She didn’t even know she had heart disease, even though she had known peripheral artery disease (PAD), and her 91-year-old sister, Cecilia Braddock, has a defibrillator-pacemaker. Even more alarming, their mother, also Cecilia, died at age 42 of chronic endocarditis (inflammation of the inside lining of the heart chambers and heart valves) and acute dilatation (enlargement) of the heart. My aunt remembers my biological grandmother, but my mother does not. They had a wonderful stepmother, and Madeline Braddock is the nana I grew up with. I’ll be talking more about my mother’s medical history at a later date.

My mother was put on Plavix (clopidogrel) and baby aspirin (both are anticoagulants, or blood thinners) after her heart attack and also on a statin drug, Lipitor (atorvastatin) 20 mg, as a precaution because her total cholesterol level was a little high at 200 mg/dL (it should be 199 or less). The drug and a low-fat diet brought it down to 137, which is very good. My father was on a statin drug for high cholesterol some years ago. He had a diet rich in fat, which my mother does not–but he refused to change his habits. Also, I recall his saying that he stopped taking the statin because of acute muscle pain, which is a known side effect in some people. (My father died in 2008, but not of heart disease. He also had colon cancer at a younger age, which was cured with surgery alone. It was COPD–chronic obstructive pulmonary disease that caused his death.)

When I went for my pre-D&C blood work in October, my total cholesterol level was 263–dangerously high–and my LDL (low-density lipoprotein, “bad” cholesterol) level was 161–also dangerously high (it should be 99 or less). The only good news was that my HDL (high-density lipoprotein, “good” cholesterol) level was 78, which is high and good (it should be 39 or more in men and 49 or more in women according to the American Heart Association). My doctor warned me that I was at high risk for heart disease and advised me to go on a statin, which I didn’t want to do. She had tried putting me on the non-statin cholesterol drug Zetia (ezetimibe) some months ago, but I had gastrointestinal side effects and lightheadedness and stopped taking it. I told her I’d been on a statin in 2007 and had associated muscle pain, but she said this wasn’t in my records (!). Fortunately, I keep my own records; but by the time I’d looked them up and found that I had been on Zocor (simvastatin) six years ago, which I believed caused my muscle pain, she had already ordered Lipitor 10 mg. So I decided to try it because she said Lipitor is a more effective and safer drug than Zocor. So I started taking it on October 29, 2013.

Earlier this week when I had my pre-hysterectomy blood work done, my doctor also tested my lipids. This was two weeks earlier than she had intended, but I was fasting (needlessly, as it turns out, for the pre-op tests), so she decided to save me a trip (I’ll be otherwise occupied in two weeks anyway). When she called with the results, we were both very surprised—and pleased—to learn that my total cholesterol had dropped from 263 to 178, and my LDL had dropped from 161 to 90; my HDL is still good. And this happened in just under four weeks of therapy and on a very low dose.

Fortunately, I have not experienced muscle pain with Lipitor. My only reaction has been some relatively minor gastrointestinal changes, although I’m under a lot of stress because of the upcoming surgery—a significant contributing factor. My gastroenterologist also said that uterine cancer can cause GI symptoms. (We’ll know whether I have any new GI problems after my colonoscopy and esophagogastroduodenoscopy [EGD] on December 11–two days before my hysterectomy.) My family doctor had advised me to take the supplement CoQ10 (coenzyme Q10), a natural substance similar to a vitamin, to reduce the risk of muscle pain, and I have been taking it.

So although I’ll need to stay on Lipitor indefinitely–I’ll have my cholesterol checked again in three months and then at six-month intervals after that–at least something about me is “normal.” Although I had resisted taking cholesterol medicine, at the moment I’d say it’s very much worth it.

Oh—and I am modifying my diet. But not tomorrow. Thanksgiving is, after all, my favorite holiday.

What’s my favorite holiday? After Thanksgiving, it’s . . . Groundhog Day. And if, like me, you’re a fan of redemption movies—and of Bill Murray—then today you watched Groundhog Day . . . again . . . and again. . . .

*And speaking of redemption stories . . .

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Dear Readers,

Thank all of you for following our sister site, The Patient Path, since its inception in November 2013, when I began my journey with Uterine (Endometrial) Cancer. That site is now dedicated to cancers, particularly those affecting women.

As we say farewell to 2015, I wish all of you around the world the best of the rest of the holiday season and much HEALTH, happiness, and prosperity in the new year.

Pamela Bond Contractor

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The following story was originally posted on December 6, 2013.

* * *

PLEASE SUPPORT THE EFFORT TO ERADICATE BLOOD CANCERS

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If, like me, you are a fan of redemption movies—and of Bill Murray—then yesterday you tuned into AMC and watched Groundhog Day . . . again . . . and again . . . and again.

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Bone Density Test & Results

Bone Scan Results & Uterine Cancer Follow-up

Blockers, Bones, Birthdays . . . & Babes

Resources

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Informed decisions require weighing all factors.

Don’t get caught in a bubble of confusion—

you might not escape (at least not on foot).

THE MISTAKE

THE LESSON

IN CONCLUSION

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“I only ask to be free. The butterflies are free. Mankind will surely not deny to [me] what it concedes to the butterflies!” Charles Dickens, Bleak House.

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Lessons from a pretty, but fragile, aqua bulb lamp.

This story was updated on March 19, 2014.

Shattered Glass & Fragmented Spirits

Notes of Gratitude

A Bit More about “The New York Way”

Other Radiation-Related Posts:

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Some of my favorite ways … to spend the time of my life.

Waiting . . . something everyone who has ever lived has had to get used to. Actually, it’s the stuff of life.

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One more–and one less–thing to worry about: heart disease. Maybe.

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**If, like me, you are a fan of redemption movies—and of Bill Murray—then yesterday you tuned into AMC and watched Groundhog Day . . . again . . . and again . . . and again.**