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.

Writing and Life in August

"...there was no one with more common sense, no stonecutter more obstinate, no manager more lucid or dangerous, than a poet." G. Garcia-Marquez, from Love in the Time of Cholera.

I loved reading this book and I particularly liked this quote from it. The protagonist is a poet who is pursuing his true love. For fifty years! Nothing is small about García-Marquez’s books. One Hundred Years of Solitude. Broad canvas.

Our lives here are not small either. We may think they are. We may get confused and lost in the itty-bitty details. But lives, I believe, are meant to be painted with very big brushes and lots of vibrant colors. No matter what comes down the pike.

I have had some very tough stuff land in the middle of my seemingly all-worked-out-now path. Ha! The laugh is always on me. There are lessons to learn and the main one I’ve learned is this:  they don’t get easier. I’ve learned much from my other lessons. So now I get – ta-dah! – new lessons that really have nothing at all to do with the lessons that came before.

When I was diagnosed with breast cancer last fall, a good friend said, “God isn’t done with you yet.” I still had lessons to learn. I moved back to Denver from Florida. It’s been a good move and it’s been hard, too. I’m not even ready to tell those stories yet. I’m not secretive, but the stories are still being formed and I don’t know where to start. It gets too noisy and too busy in my life to write the stories. They’ll come. But I don’t know when.

In August I signed up for two writing activities. One is a repeat of a Free Write Fling. Participants are given a prompt and a photo each morning and asked to write just 15 minutes – from the prompt or something else on your mind. You don’t have to share the work, or even read it when you’re done. You’re just working your writing muscles. There’s a blog where you can write about your experience in the writing that day, reply to what others have said, or ask questions of the facilitator, Cynthia Morris of Original Impulse. Just 31 days. If you write every day, you are entered into a drawing where, if your name is selected then you get two free 30-minute coaching sessions with Cynthia. That’s what I want this year.

The other activity is called the August Postcard PoetryFest. I’ve participated in it three times now and it is a lot of fun. Only 31 people can sign up (I was one of the first this year) and a few days before the end of July, you begin by writing a poem on a postcard and sending it to the person on the list just below your name. Some participants are in England, Ireland, Germany, Canada, but most are scattered around the U.S. It must be a new poem each day, not one you’ve written in the past. It’s quite a challenge but it’s really fun. Because … you’re receiving postcard poems everyday from all over the country and the world! I haven’t started collecting blank postcards yet, so I’ll make a trip downtown where there are tourist shops and look around. I’m considering making some of my own from the standard post office postcards. A collage, oil pastels, crayons, colored pencils, stickers.

Both of these activities will keep my mind off more mundane issues like health, finances, the heat, what’s for lunch, trips to the grocery store and doctors’ offices. Yeah. :D

My Current Relationship with Liver Disease

I have a liver disease. When I tell people that, I get The Look. So right away I say, I didn’t get it from drinking too much alcohol. The Look remains. I have something called Primary Sclerosing Cholangitis. PSC. It’s rare, it’s subtle, sometimes not subtle at all, it’s cruel, it’s like being part of a cruel science experiment. There is no treatment. (I'm on the transplant list, and am looking for a live donor now - again.) But they do know it is these things:

1.     an autoimmune disorder

2.     of the bile ducts (which carry away toxins and by-products from your liver

3.     the bile ducts harden on the outside and get inflamed on the inside

4.     sometimes they get completely blocked and they have to go in and open them

5.     hopefully

6.     sometimes they put in stents to keep the ducts open for while, 3 months at the longest

7.     then the stents have to be removed or they cause infections

8.     you get infections anyway, called cholangitis

9.     which quickly turn to blood sepsis. Real fast.

10. You either stay in the hospital and get IV antibiotics or

11. You can stay home and take a couple powerful antibiotics which

12. Wipe your gut flora out

13. Then you have to take A LOT of probiotics, and now I’ve found out

14. Prebiotics (chicory root, raw asparagus – uck, and a few other things like that)

15. And they promote the growth of probiotics in your gut

16. And then you feel better

I read a lot about PSC. In spurts. Lately, since my last bout of cholangitis I have a new symptom. I can’t sleep. The doctor prescribed Ambien (worked for 3 weeks), Lunesta (worked 2 nights) and now Restoril (temazpam). The most sleep I was getting at night was 6 hours. This sounds okay to most people – "Oh, that’s all I ever get!" But I’m sick, I’m fatigued, I am one hurtin’ gator. I need a lot of sleep. About 10 hours a day. So, 6 hours is just a little over half of what I need.

Last night I took two Restoril at 9:15 pm and didn’t wake up till 6:15 am. Nine hours. I feel better, but what I’m looking forward to is a repeat performance. Many of them.

When I visited my hepatologist, Lisa Forman, an awesome, smart, caring physician, last Monday she talked and questioned and listened to me a lot. Then she said, I think you have the early stages of hepatic encephalopathy, the sleep disturbance part. She prescribed Xifaxan 550 mg for me, the preferred and the best treatment. HE is not something you get and then keep from that point on. But it can recur and Xifaxan helps suppress those recurrences. But it’s a very expensive drug. $1393/month retail. Oh, the pharma gives you a $100 coupon good for 6 months. Whoopee. Right now I’m waiting for authorization and pricing from my Medicare Advantage insurance, Anthem Blue Cross-Blue Shield. So far, they’ve been complete assholes with me on just about everything I try to talk to them about. I don’t have much hope of getting this drug.

So I read this article in the scientific journal Nature. I’m not a member so my cousin Vann, a med researcher at Duke, emailed it to me. Says that prebiotics and probiotics work well at treating HE. Better than Lactulose. This morning I’m going to a health food store that carries chicory root in bulk for $1.58/bag and add that to my smoothie in the morning.

When I can’t sleep for this long, I begin to worry about having a seizure. I do have a long-standing seizure disorder which is controlled by meds. But the last time I had one was when I had an internal bleed and basically lost all my meds. The medical staff was too busy saving my life to worry about a little ol’ seizure. I was in ICU when I had it, so that was good. I didn’t end up on the floor. That was about 4 years ago. The one before that was 10 years prior to the one in 2008. And they can be caused by a combo of lack of sleep (prolonged) and stress. BUT, I think I’m going to be okay now.

If you've never read it, go look up The Spoon Theory on the website of a woman with lupus. It’s really good. Oh, her URL is butyoudontlooksick.com . The Spoon Theory is in her menu bar.

I get so many spoons per day. I think yesterday I had about 3 or 4 or 5. I like it when I have 20.Today I think I’ve got about 10. I will use them all up. You know why? Life is good. It’s the only game in town. I want it and I want a good one. I want more people to write to me – waterbear7@gmail.com or waterbear7@aimhigh.net.

Or call me – 303-596-0316. Just say hi. I get way too many calls from bill collectors. I need some real laughs! And I need your love. I need it from anywhere I can get it. I am a Love Hog.

You’ll have to look up those terms I threw at you above. I get tired of explaining scientific shit. But if you don’t want to know about it, that’s okay, too. I completely understand.

I love reading your comments here. Not on FB, okay? And please, please, please subscribe. You'll get a blog post from me in your inbox. Easy peasy.

Just don’t give me The Look, okay? Deal.

Learning to Swim

I remember learning how to swim for the first time. Putting all the moves together. Age somewhere between four and six years old. I did it myself.

Our family, plus the high school kids in my dad’s choirs, had traveled by bus to a place in central Florida called Lake Ellen. Try as I might, I’ve never been able to locate a Lake Ellen in Florida again. It was beautiful and the lake was huge and fresh and clear. There was a sandy beach that sloped very gently into deeper water. A diving platform out in the deep water was popular with the teenagers. My brother and sister, David and Diane, were along on the trip, of course.

I was in love with that water. I wanted to get in it and just stay there – it was fresh (not salty like the Gulf) and really clear so you could see things. If I’d been allowed, I would have eaten my peanut butter and banana sandwich while sitting waist-deep in the lake.

I was experimenting with swimming a lot that day. I could already dog-paddle around and I’d watch big people to see how they swam. My mother had a very distinctive version of the crawl, the main purpose of it to never get her hair wet. She would pull each arm out of the water crisply with her elbows high and then kick vigorously so she could keep herself as high in the water as possible. I would occasionally try to copy her, but I couldn’t pull it off. Besides, I wanted to get my hair wet.

Most of my swimming was done underwater, and no dog-paddling. I was definitely doing the breaststroke with my arms. And trying hard to coordinate my leg movements with what I was doing with my arms. At one point, I brought both legs up toward my chest with knees bent and then pushed them out and back so they met and were straight again. At the same time, I was pulling back my arms in my well-practiced breaststroke. I realized I was really swimming and moving forward with what I learned much later was a frog-kick. The Whole Breaststroke. I knew I had mastered swimming.

I kept it up for a couple more coordinated strokes, ran out of air, then leaped up and shouted, “I can swim! I can swim!” I had to find my brother and show him.

Learning takes place like that for me. If I want to learn something – to do it, to just know it – I dive in and mess around with it myself until I do make some sense of it. Oh, I took swimming lessons later on. And I took piano lessons for years. I have taken a lot of writing classes and written together in groups. But it really depends on my heart, my passion, my curiosity, my energy to learn something new. I loved the water, I adored the piano and music, I crave writing and telling stories. And so that is what I have done.  

What is your heart telling you? Where does your passion lie? What are you truly curious about? What energizes you endlessly? I’d love to hear from you.