Tag Archive | uterine cancer

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

Dec11

Sandee & Mitch

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

Sandee

 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 Holding Her Cup_October 2009

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:

Sandee's Cup

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.

Sandee's Heart

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

See more in Sandee’s memory here.

* * *

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Update: You Can't Unbreak Glass…but the Fragments Can Be Contained

Mar19

Final lessons from a pretty, but fragile, aqua bulb lamp.

Aqua Bulb Lamp_Desk 1 #3

   The Patient Path . . .

Aqua Bulb Lamp_Desk 2 #2

       Yields Illumination

Last weekend, I got the call from Pier 1 that my “new new” lamp was finally in. I had broken the “old new” lamp 10 days before while making the purchase and had felt so bad about it I had to do something with the experience. That something was the March 6, 2014 post. I had waited patiently for the new lamp so I could properly illuminate my office with this second lamp on my second desk.

I went to pick up the lamp and was helped by a different store clerk than the one who’d helped me previously. Thankfully, this lamp, unlike the other one, was in a box and not just bubble-wrapped. Then I looked at the top of the box, which, strangely, was printed with a different model name on it. The clerk called the manager over, a different one and not the one who had helped me during the initial purchase. The manager offered to unpack the lamp so I could make sure it was the correct one. On second glance, the correct model name was printed on the sides of the box. Odd. We opened it, and “my” lamp was inside despite the identity confusion on the outside. I quietly took my new lamp home, eager to set it up on my second desk.

While putting it together, I saw that the threaded top where the finial is screwed on to secure the lamp shade had been soldered on crooked, which meant the lampshade pitched forward. Hmmm.

Bent Lamp Harp_30%

So, I called the 800 customer service number, and the representative said I could swap out the lamp for a new one. I couldn’t bear to do this again, and she offered to call the Flemington store on my behalf to see what they could do. She did, and the store had another lamp in stock (in case I should need it?). I called the store and spoke with the manager, who had already dealt with me once that day, but she was agreeable and she said I could swap out either the harp or the entire lamp. I took the bent harp and went back to the store.

While the manager was unpacking the stock lamp, the first young woman who had sold me the one I’d broken 10 days before appeared. She didn’t recognize me, but I “confessed,” and the manager said with mock anger, “Oh, she‘s the one.” They were good natured, but I was uncomfortable and wanted to turn the experience around. So I thanked them for being so nice about the situation and told them about the story on the blog. The young woman looked it up on her smart phone and seemed eager to read it, especially after I said I’d complimented her and the store for their handling of my bungling. I swapped out the harps and left the store, feeling that all had ended well.

When I got home, I finished setting up the second lamp and stood back to admire how softly pretty and glowing my office looked. Then I took the box to the garage and thought about the two different model names on it, unsure of how such a thing could happen. But I decided to take it as a final message about the entire lamp experience. Whereas the first lesson was about the paradox between sturdiness and fragility, and then how vulnerability can become strength once again in the human heart, this lesson seemed to be about patience. But more than that.

This final lesson was also about identity. Just as sturdiness can mask vulnerability, external labels can create confusion about what’s inside. In this case, the true thing–my lamp–was inside a box with two names. Currently, I am working on a story about identity for my writing group, so the occurrence of labeling ambiguity has symbolic meaning that I will be exploring more deeply as I continue to write.

In the meantime, though, I am thankful that the “wrong” name was on the top of the box. Because that name was Sophia–Greek for “wisdom.”

________________

MARCH 6, 2014 POST

Aqua Glass Desk Lamp - 2_50%

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

Radiation-Related Posts:

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

Mar6

Aqua Glass Desk Lamp - 2_50%

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:

Peach Ribbon 1_50%

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:

Peach Ribbon 2

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).

Other Radiation-Related Posts:

My Current Story, Update: The Art of Waiting

Jan12

Click: A Few of My Favorite Things_#1

A Few of My Favorite Things_#1_200%

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

A Few of My Favorite Things_#2_200%

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.