What happens on February 3rd?

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.

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 will become leaf buds . . . in time. I hope you will have a quietly wonderful February 3rd, too.

My Friend’s Story – Leukemia: In Memoriam on Her Birthday–Two Last Cups of Tea

Dec6

Reposted from 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

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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.