Sleeplessness and Its Discontents

I read a novel years ago called Fatelessness, written by a Nobel Prize winner – a fictional account of his experience as a 15-year-old Polish Jewish boy in Auschwitz and other death camps. One surefire way to torture prisoners is with sleep deprivation.

I am not fateless, but I am sleepless. My lack of slumber arises from many contributing factors.

The first one is the liver disease I have (primary sclerosing cholangitis or PSC). Doctors and scientists don’t know why this symptom raises its ugly head, but it is observed in, and experienced by, many patients with PSC.

Another factor is my age. Lots of older people develop sleep problems as they age. They don't get their 40 winks the way they used to.

One more factor I’ve got weighing against me is the form of chemotherapy I’m going through as a result of the type of breast cancer I had (estrogen-induced). To hold back recurrence, I take a tiny pill daily that sucks out all the estrogen from my body. Therefore, I am going through a second menopause; the lack of estrogen causes little drowsiness and lots of hyperactivity.

So, combined, these factors add up to a pretty strong physical inclination towards lack of adequate dozing at night.

I make up for some of the loss with afternoon naps, usually two hours long. Last night I stole about 10 winks of snoozing – about two hours. Most nights it’s closer to four or five hours (or about 30 winks).

I feel crazy in the middle of the night, like jump-out-of-my-skin crazy. I don’t know what to do with myself. My cat is lolling about on the bed with me – stomach, back, side – kicking out long, loud purrs. And I watch her with such envy. 

Long novels help. They don’t put me to sleep, but they distract me from thinking of taking more drastic measures. I don’t like the craziness; it even frightens me. But no matter how the night goes, at around 5 a.m. I return to a more normal state of mind. I’m not sure why this happens, but I’m terribly grateful it does.

I feel ready to add more structure to my day to help solve or ease the sleeplessness. I’m also going next week to see a biofeedback therapist and pry some help from him.

What tortures me most? The utter and complete ease I used to have with slumbering. Anywhere, any time, on any surface. The perfect amount, and if interrupted, quickly made up very soon. That was then. This is now. I hope my fate is to add more sleepfulness to my nights.

Three Reasons Not to Have a Bucket List

Wait, everyone has a bucket list, right? You have one, don’t you?

I don’t have one and here are the three reasons why I don’t and why you should give yours up.

First, you should live a good daily life. That’s right. Every day you should be living your bucket list. Who says you will even get through No. 1 on your list, if you have a list of ten things or places? Why aren’t you living it today?

Shortly after I was diagnosed with Primary Sclerosing Cholangitis (yeah, PSC is a lot easier), a serious disease of the liver with no treatment but transplant, a friend kept bugging me to go back to Buenos Aires – with her this time. She said if she was diagnosed with something like that, she’d want to travel as much as possible. I went with her. For a month. I didn’t have a bad time, but I did get sick down there and I was pretty tired much of my time there.

We were staying in an apartment in a well-to-do neighborhood and for the most part I hung out within a 10 to 12 block area. That’s where my days and my evenings were spent. That part of the trip was quite lovely, the way I spent my days.

I went to the same café every morning for coffee and breakfast. The wait staff got to know me and we would converse in Spanish. My accent improved over the weeks and they trusted to have little conversations with me.

I was writing a lot and also working, tutoring students' writing online in Colorado. I would go to two different internet shops and use their computers. At one, the guy who ran it obviously didn’t like Americans but I was always very polite and soft-spoken (in Spanish) to him. He finally softened to me and slowed down his Spanish.

The national polo grounds were only four blocks from our apartment and though there were no games then, I saw many polo players striding through the neighborhood in their tall black leather riding boots and riding outfits.

If I wanted to go downtown, I got a taxi. My friend Sandra came over and picked me up for tango one night at her favorite club. Another night she drove us out to a special place by the River Plate for dinner at a restaurant called Jumpin’ Jack Flash. Seriously. We looked across the river to see if Uruguay was visible.

I took private Spanish lessons a couple of times a week at a school around the corner from the apartment. And every day and every evening I walked in the neighborhood.

Was it a bucket list vacation? Yes! My daily life was very pleasant and it was filled with people, some very friendly, some not so much, and some standouts. On a daily basis, it was decidedly enjoyable.

But I didn’t get on the train and head south to Patagonia to explore that magical land. I didn’t visit landmarks and as many neighborhoods as possible in Buenos Aires, city of 13 million. My life, just as it is here in Denver, was contained within the radius that I got to know well.

Second, don’t wait to travel – go now. I’ve traveled to and lived in a lot of very cool places all my life. I lived in Hawaii (yes, it is paradise) for most of a decade and graduated from the University of Hawaii, worked, played, really lived there. I lived in Washington, D.C. while Nixon was president and the Watergate scandal was breaking. I went to the Smithsonian frequently, rode the very scary bus, and spent a lot of time in Georgetown. I moved back to Florida, from whence I came, and lived right on the beach for five years, because that’s what I wanted to do. Then I moved out West, became a ski bum for one winter, moved to Denver, and skied for ten years. I never had tons of money, but I made it happen. Somehow.

Three, don’t spend your life yearning – just leave your six-mile radius (this is a scientific fact gathered from cell phone stats) and meet new people, experience new places today, this week, every week. Change your Starbucks now!

I still want to go to some places. But mostly I want to visit people I love. In California, my friend Michelle. In Washington, D.C., my niece Dayna. In Chester, New Hampshire, my nephew Jay and his wife Michelle and their two kids, Jackson and Caroline. In Flagstaff, my niece Kerry and my two nephews Kai and Kenny, and their spouses and many children. And when the weather is cool enough in Florida, my sister and her husband, Diane and Jay, and some very special friends there. That’s about it.

I would love to hear your ideas and your bucket lists and what you think of my advice. And please leave your comment here – you don’t have to put your real name down! – so we can get some fun dialogue going. I look forward to hearing from you.

Paperwork and Illness, USA

My hardest won piece of advice in working alongside Social Security Administration? Laughter and endorphin-raising exercise, when possible!

As soon as I applied for Social Security Disability Income, because of my new-found inability to work associated with my long-term illness, I discovered a new form of work – paperwork performed for the SS Administration. It stupefied me how many forms had to be filled in and how many more records needed to be supplied. What surprised me most, though, was the continuity of the work. Something new every week, a new situation to be solved every month or so. And then waiting to hear the Result. Making phone calls – finding out how much of your day could be eaten up on hold, waiting for (hopefully) the right person. Making trips to SSA offices – as infrequently as possible. That was the Whole Day.

I took up this new form of work in my life at first with wonder, then frustration, impatience, tears, more symptoms of my illness, insomnia, unrelieved stress, and belief there was no one to help. But the paperwork never stopped and the win-lose levels were raised, and I sought relief. That’s when I discovered I could laugh at the worst moments. I could completely let go and find peace inside. I found a new perspective and I began to sleep at night. Stress was relieved. And I got help, too!

If you have Disability Income and have some difficult issues with the SSA to deal with, you can contact a federal legislator – a congressional member’s office. Preferably a well-known, well-connected Senator in your party of preference. And plead for mercy. They have people on staff called Constituent Advocates whose job it is to negotiate with SSA (and other federal agencies) for you. That pleased me no end. I love to pass along that bit of information because it’s so invaluable, and because it helps you laugh when you’re not laughing and should be.

Set this short list to memory and you, too, will be fine –

·      Hope for the best

·      Take names, always always always

·      Relax

·      Exercise as much as possible to build a store of endorphins

·      Eat dessert whenever you can

There are many secrets I have to keep with Social Security. But not these. They are mine, and now yours, too.

Post-Mastectomy Blues – Breast Surgery, Part 2

It’s a secret – no one knows what a mastectomy surgery will leave strewn in its path.

I had no idea what to expect – not really. I knew I’d have a drain and another tube connected to a Pain-Buster, both coming out of the incision after surgery. I knew I could shower within the first 24 hours after surgery. I knew when I’d return to see a nurse practitioner for dressing removal. I was given some exercises from the nurse at the hospital, and she said they were really important to do. I knew it all hurt.

I was in shock after the surgery, though. A shower? Too complicated for me with the two drains. I couldn’t look at the surgical site, even with the dressing on. I couldn’t think or feel anything. Just do exercises, go see nurse about dressing and drains.

When the drain and the Pain-Buster tube were both removed, the extractions created strange sensations in my now foreign land. The nurse touched the incision and there was numbness and then feeling, then pain. I told her. Yes, you’ll get that. Get what? I get nothing so far.

Eventually I was without dressing and drains, and left on my own. I took a look in the mirror at the incision. I couldn’t bear looking at it – I felt so ugly and deformed. Thankfully it was late fall in Colorado and I could wear bundling clothes – sweaters and layers that faked the breast that was no longer there. But when I’d go to the bathroom and take my clothes off to take a shower, one brief glance in the mirror would horrify me. I learned not to look.

Was I supposed to know this? Was I supposed to have asked the oncologists (there were so many of them) and the nurses what to expect physically and emotionally? I didn’t know the questions, and I was too worried about Having Cancer to even consider the other side of Getting Rid Of It.

I couldn’t touch the incision except very infrequently. I would try to imagine a lover ever wanting to touch my body again. My breasts had been so sensitive. They are a secondary sexual characteristic. What do you do without one of your breasts? What about women who lose both breasts to cancer? What do they think, feel, experience with no breasts and two incisions that don’t feel at all like breast tissue used to feel?

I felt de-sexed. I felt cut upon and violated in the worst way. I had submitted to a body part amputation with no knowledge imparted to me of what that result would be.

It took months to go to Nordstrom and be fitted for a prosthesis for my left breast. I wish I had gone to see them prior to the surgery. They treated me like a woman – a woman! – and anticipated my emotional responses. They protected me. They coddled me. They beautified me. They brought me a little bit closer back to being a woman and feeling sexy and feminine.

If you’re diagnosed with breast cancer and mastectomy is offered as the preferred surgical option, are you willing to ask all the questions about the result? Will you go beyond cancer recurrence and ask about the exact physical result? And then, will you go beyond the physical result and ask for information and support for the emotional results of mastectomy – and honestly, any breast surgery? And are you willing to show your naked heart and ask for help?

What’s it really like? Breast Surgery, Part 1

When you’re diagnosed with breast cancer, there is a lot of scientific-medical-surgical consulting that takes place. There is a sense of urgency – for both the doctors and the patient. Get it completely diagnosed, measured through biopsy, PET scan done to see if there is cancer anywhere else in the body. Usually the patient talks first with an oncologist and then a surgeon. The surgeon makes recommendations based on the location and size of the tumor.

“I have a tumor. It’s malignant and growing. How fast? Has it gone into my lymph nodes yet?” These are some of the thoughts I had. “Will I need chemotherapy, radiation?”  

“We won’t know about chemo or rad,” the scientific team says, “until your Oncotype testing comes back two or three weeks after the surgery. It will also measure the likelihood of recurrence and the need (or not) for chemotherapy and possibly radiation.”

No one – No One – asks you how you’re feeling, either physically or emotionally. The decisive and urgent actions to eradicate the cancer growing in your body are the focus of the whole medical team – oncologist, breast surgeon, oncological radiologist.

I was given the choice of lumpectomy or mastectomy. But two surgeons highly recommended mastectomy because of the placement (behind the nipple) and the size of the tumor. I wanted it done, cleaned, gone. I have such small breasts, barely a handful. I chose mastectomy; the doctors noted duly, good choice. Had ... such small breasts. One breast now. And many women lose both at the same time and in the first surgery.

But no one came to tell me how it feels, not physically but emotionally and mentally, to have a breast removed. A lumpectomy, too, can be deeply invasive and heavy scarring results. No one asks something like, “Do you know or suspect that you have PTSD from any other event or process in your life? Who are your caregivers after surgery? We’d like to meet with as many of them as we can so we can prepare them for your physical needs, but also your emotional responses following surgery.”

No. No one comes and asks these questions. Perhaps a woman, with breast cancer awaiting the surgery, has been raped in the past. Maybe even 20 years before, and still has PTSD, and she’s beginning to see and feel the tiny signs of being triggered – rising anxiety, full-blown panic attacks (Oh, I just had one – and then another comes along two days before surgery).

No one prepares you for the full impact of the first minute of awakening from anesthesia, as you slowly remember why you’re in the hospital bed hooked up to IVs and you don’t know what to touch, and you don’t want to touch anything.

Part 2 tomorrow…

Daddy: A Life Remembered

It was my father’s birthday yesterday, July 29th. He would have been 99 years old. He is Daddy. And he will remain Daddy to me for the rest of my life. He died when he was 81 years old. His life remains an inspiration to me, as it was to many others, especially his St. Pete High choral and orchestra students.

Daddy physically suffered so much in his life, beginning with the onset of migraines at eight years old. But he kept his ironic sense of humor and also, more importantly, practiced his art and his philosophy of life. Life was an adventure to him, and he had many adventures. He inspired me with his honesty, his integrity to his art, music, and his sense of excellence and of fun at whatever he did. He was always sweet and kind; I remember a couple of times when he tried to be “enraged” as a parent, but he could never pull it off. Once, he caught me climbing onto the top of the refrigerator to steal cookies, and warned me he would spank me if I didn’t get down. My response was simply, “No you won’t.” And we had a good laugh about it.

He came from a very unemotional family, yet I believe that Papa groused and raged a lot, and was very opinionated. Mama just purely loved David, her third of five sons, and he clearly was her favorite. He loved her in return immensely, completely. She took good care of him, and she brought him to the doctor at age eight when he began having frequent migraines. It was at that visit that the doctor had the intuitive sense to measure David’s legs and discovered one shorter than the other – Legg-Perthés disease where the top of the femur wears away. The treatment was horrible – a cast for two years from his chest to his knees. I don’t know how he managed, but he did and somehow managed to stay active. He walked with a very slight limp as an adult, and I never noticed it until a friend at St. Pete High pointed it out to me. Yet, he excelled as an athlete and was always very active, especially on very long bike rides into his fifties (like a trip across the Gandy Bridge from St. Petersburg to Tampa). In college he achieved the Third Best of the Southeastern Conference in field and track in the javelin throw.

He studied the flute as a teenager and found his true love, music; he wanted to go to college. He was discouraged by his father to do so (even though Papa held a Ph.D. in history from Wake Forest College). It was 1931-32, the Great Depression, and somehow Daddy saved up $300 and hitchhiked to Chapel Hill where he was accepted at the University of North Carolina. On his hitchhiking trip, one of his drivers stole his very valuable Haynes flute, but he was able to track it down and reclaim it. He was persistent and determined always, no matter the task or adventure before him, and he impressed those qualities on all his four children.

He brought his two younger brothers, Truett and Ed (who both went on to earn MDs), to Chapel Hill as soon as he was able to. Truett was only 15 years old at the time. The three brothers all played musical instruments, Truett the oboe and Ed the baritone tuba, and they formed a trio and played in the school cafeteria in the evenings (and cleaned the hall, too) to earn enough money to live on. Daddy became the drum major of the marching band (the guy with the gigantic hat and huge directing staff) and held that leadership position for at least two years.

There’s a lot more to tell, and I know all of you have stories of your father – good, bad, indifferent. My father was my hero. My father was possessed by his love of music and as far as I’m concerned, that’s what he pursued wholeheartedly his whole life. He taught me, by demonstrating it, to live my passion. Oh, he couldn’t fix the slightest thing in our home. He did, however, completely disassemble and rebuild a car’s engine one summer. He only had a few parts left over … but the car ran perfectly for years after that. After graduating from UNC with his master’s degree, he got a book and taught himself how to tune pianos, and he was the best, most musical (and in demand) piano tuner I’ve ever known.

Next year, 2013, he would have been 100 years old. But honestly he suffered so much physically and I wouldn’t have wanted him to live longer than he did. In October of 1993, he got very sick and came very close to dying. But he didn’t, and in his recovery he unearthed his two Haynes flutes and began playing again. He also had an electronic keyboard and began playing that, too. Daily. I don’t think I’ve ever known anyone so inspired to live passionately and to create beauty as he.

On January 11, 1994, though, he passed quietly in the middle of the night. He had told my mother and the rest of us sometime between October and January that there was no one he was going to miss more than her, Doris. Their love for each other was improbable and unlikely, but I could never imagine a more lively match.

I hope, in your comments, dear readers, that you will share a story or two about your own father, the presence, the absence, the good, the bad, and the essence of your fathers.  I look forward to reading them.

Cake

Cake

a six-word, six-line piece

When I was making as much money as possible

as a Chinese doctor, I ate yellow cake

every day. When I was a writer, I ate chocolate

ice cream and danced in the moonlight. I wore purple

dresses and black socks and dreamed of luxury

as a Mercedes-Benz car to drive. When I lived in the convent, I was pure.

It is possible that the chocolate cake appeared on my front porch by accident. A mistaken identity. A drive-by caking. But the note, written in a careful Celtic calligraphy on a light shade of purple linen paper, spoke of the luxury of friendship and bore my name and that of my lover. He was ending the friendship with a beginning of pure love and a dark chocolate heart from Paris buried in the top of a cake from his hands and heart.

6May97

Just a break from the usual entries. Enjoy.