Tuesday, May 28, 2013

Friday, May 24, 2013

White Coat Syndrome?




     I’m noticing numbers again.
     My blood pressure’s been high, a fact my oncologist says could be a symptom of ‘white coat syndrome.’ This refers to the anxiety patients feel upon entering the doctor’s office. She says there’s a debate as to whether to treat for that. The first visit my top number was a shockingly high 175; this visit it was 165.  A couple days ago, at the surgeon’s office, my top number was 155, still unreasonably high. My surgeon and oncologist chat frequently and the numbers shared across offices have my surgeon concerned. She says they won’t do surgery with my blood pressure that high due to risk of stroke or other complications.

     This makes me sad. I’m definitely in the Approach part of the Hero’s Journey, now looking ahead to the Ordeal, which I’m defining as the surgery. I’m getting prepared.
     My surgeon gave me a choice: visit my internist or one of their cardiac specialists to find out for sure what’s going on. I met my internist once two years ago after my eighth grade daughter signed up for a trip to China with a group led by her friend’s mother. Shortly after committing, the thought of sending my shy child, who hadn’t managed to stay the whole week at camp the summer before, to one of the farthest places on earth panicked me to the bone. (This was my refusal of the call; my daughter was having hers as well.) Of course she’d be among friends, but still. My heart raced and I felt dizzy.
     I met internist Hanny Tan, who has a cardiac focus. She was bright and sensitive and also Chinese. She took a number of tests and a couple days later called to say everything was fine, especially my heart. She made a fine first impression and now I’m going back for my second visit on Tuesday. My blood pressure was once remarkably low so this is a turn. There’s no way I want to get on blood pressure medication.
     In the meantime, I’m working out as much as I can.  Eating celery like Ron! I’ve joined his club (although I prefer it thinly sliced at a angle with apple chunks, a dollop of yogurt and walnuts, my version of Grandma’s Waldorf salad). I’m watching my salt intake. Not drinking alcohol (I haven’t drank anyway since treatment started.) Avoiding caffeine. Admission: I squeezed in a cup of coffee before the surgeon (155 top number) appointment. I’m trying to stay unstressed, which might be my hardest challenge, what with my need now to worry about my blood pressure and my teens and my students not turning in work on time and any of the other uncontrollable thoughts on my journey. I mentioned to the oncologist the much talked about New York Times article I read about the overabundance of breast cancer treatment and then the language surrounding the triple- negative and my sensitive doctor said, “You need to stop reading things like that. That’s an intellectual discussion. Save that for after this is over. And you’re not totally triple negative. You need to hear that.”
     There’s a time for everything, and I acknowledge this is the time to crack open the meditation tapes. A friend suggested acupuncture and Ron’s nudging me to join him in yoga, but first things first.
     Finally, I’m monitoring my blood pressure over the next several days when I’m not in the presence of ‘white coats,’ who incidentally don’t dress in white coats, but colorful sweaters and slim skirts.
     Last night, Ron took my blood pressure at rest at home and it was 122 over 68. This afternoon, I took it at the pharmacy and it was 118 over 55.  This morning we just took it; it’s 134/68.
     I don’t know what’s going on, but my doctors do listen to what I tell them. It makes sense to listen to my body and give them the information I have. We’re all working together for the best journey possible.  Hopefully, like the one my daughter had to China two years ago. It was life changing.

Thursday, May 23, 2013

The Not-Knowing Place



         It’s student conference time and last week, a student expressed concern for how he was feeling about his script. He said he was so sure of where he was going at first and now after hearing others’ scripts, gaining ideas from workshop, readings, discussions and just lingering with his own words and his own work, his story has changed. In short, he’s uncomfortable. He’s not particularly unhappy with where his story is going; it’s more the fact that it’s beyond his control and he doesn’t know what to do with that. The next day, two other students echoed a similar feeling of not knowing.
         I tell my students something I discovered years ago. A place of not-knowing is part of creative problem-solving. A writer must anticipate that at some point he or she will enter that space and be uncomfortable. One should strive to get comfortable with being uncomfortable because not knowing is (likely) exactly where you need to be. It’s a stewing place. And it’s temporary.
           The not-knowing place is not limited to right-brained problems. It might be the space in calculus where you have no idea what’s going on, where you’re processing new concepts and trying to make connections before it finally clicks and you get it. It could be the feeling you have your first month on a new job. A time you simply have to trust and take it all in until you’re comfortable.
          Not knowing is a feeling I need to remind myself about on this journey. I’m uncomfortable and it’s beyond my control. If you’ve read my last posts, we’re at the ‘we don’t know if its Secretory Breast Cancer or Breast Cancer with Secretory Features’ place. The experts differ. My surgeon confirmed yesterday that all the stuff that doesn’t make sense truly does not make sense. If it’s Secretory, then I don’t really need the chemo that I’m doing my third round of today. If it has Secretory Features with the possibility of rogue cancer cells, then as my surgeon says, “you’ll do better with chemo first.” Either way, I’m triple negative (or close to it). Secretory is always triple negative and not a problem. If it’s Secretory Features, it is a problem. It’s highly aggressive. That’s the ‘doesn’t make sense part’. We won’t know until we know, which is after surgery. If it’s Secretory, I won’t need radiation afterwards. If it’s not, I will.
          So I’m on the thorough course, finishing the chemo just in case. But what we all wish for, my doctors and me, is that I don’t need what I’m doing. We wish it to be pure Secretory Breast Cancer. Surgery on July 9 will tell.
          My place of not-knowing is not about creative problem solving, but since I’m writing a script about a woman who discovers that whatever she paints comes true, I’m putting myself in her shoes and tossing that wish out there. I did a doodle. 

I can’t help but see the word ‘Secret’ in Secretory. It reminds me of Rhonda Byrne’s best-selling positive-thinking book, “The Secret.” The key message is visualize what you wish for and it comes true. Some call it magical thinking. Either way, I’m stashing the sadness and sinking feelings should my case prove to be a more aggressive cancer with high incidence of recurrence. They say 99 percent of the things one worries about don’t happen. 
     That’s my mantra for today. Tomorrow I'll start my mediation tapes to help me stay there.

Saturday, May 18, 2013

Words and Numbers



     Some days, I notice words. Last oncology visit, I noted all the words in the examining room as I awaited my doctor. I was seeking a sign -- or hidden poetry. The Cover of Sports Illustrated said: The Notre Dame Miracle. A posting by the door read: Please check out before you leave. I tried not to check out while I was there, but hoped I wouldn’t be kept waiting much longer. Above the examining cot, a red alarm shouted Fire Fire. My heart pounded. Scrolling on the computer screen: Clinical Care Workstation, Authorized Use Only. By the sink: Hand Hygiene Quick Reference. Okay. Key Points. 
     In hindsight, I should have browsed those key points and given myself a refresher because I caught a cold a few days later. Chemo lowers one’s immunity so one needs extra vigilance. I didn’t wash my hands after class before snacking (on broccoli!) and that got me. The cold hit hard, concentrated in my head, especially in my eyes. My tears were acid; they stung and the skin under my eyes grew dark and crepey. I aged 10 years in a week. I don’t know if that was a chemo thing, or a cold thing, but it’s over now (I’m growing younger again), so all’s well.


     Lately, I note numbers. They’re on bills from the doctors, hospital and labs and on Explanation of Benefits notices from the insurance company. At first, I avoided these envelopes before opening. Now, I rip them open, seek the bottom line and, since we have high deductible insurance, call the provider and ask for a discount. The providers comply when I pay in full, so I’ve been racking up miles on my credit card (for the grand vacation when all this is over!) But yesterday, I got an envelope from the insurance company so thick, I moved into not-ready-to-deal-with-this mode again. When I opened the envelope this morning, I find six ‘not a bill’ summaries for services rendered: $3,619.56, $100.88, $31.24, $108.33, $285.15, $200.86 And good news: the insurance company paid them all! I’ve met my deductible and insurance has kicked in without me needing to call to advocate for myself. All those premiums, all those years were worth it. It’s a Miracle. Those who were once threshold guardians have become my allies. At least for now. 

Friday, May 17, 2013

Action Hero




       It’s easy to connect Angelina Jolie to her action hero roles (think Lara Croft Tomb Raider) after she made the choice to have a double mastectomy as a breast cancer preventive measure. Learning she carried the faulty BRCA1 gene, which gave her an 87 percent chance of contracting breast cancer, Jolie took action and in doing so, lowered her risk to 5 percent. The fact that Jolie lost her mother at age 56 to cancer was a powerful motivator.

      Jolie’s news got me reading the net. First, I found a much talked about New York Times Magazine article from April 25, 2013 entitled “Our Feel Good War on Breast Cancer,” which weighs the pros and cons of preventive mastectomies as well as mammograms and breast cancer treatment. For the most part, the article questions the frequency of treatment and surgical procedures, and suggests a bit of an environment of fear-mongering surrounding breast cancer in general. It reminds me a bit of some of the controversy surrounding the frequency of Caesarian sections in America.      
      When my son was born 30 years ago, I labored for a dozen hours, dilated to 9 centimeters and then failed to progress. The doctors did a C-section and I went home with a nine lb., 5 oz. healthy baby and a quick recovery. Contrast this to my grandmother who labored for three days to give birth to my father, who was a ten-pound baby. My father suffered such head trauma through the birthing process that shortly after birth he had a seizure, which somehow righted things. He ended up being perfectly healthy and both my grandmother and father lived a long life. But many women in those days died during childbirth, including my husband’s grandmother after giving birth to his mom. In my case, when my second and third children (girls) came 14 and 16 years after my first, I had scheduled C-sections. My recovery was again quick in both cases. I never felt I missed out on anything by not having vaginal deliveries. I do remember a support-group visitor at the hospital bringing me a pamphlet after my son was born, entitled  “Having a C-section is having a baby too.”  The visit left me confused; I was happy, not in need of support. After each of my children was born, I felt blessed to go home with healthy babies, each over nine pounds. 
     The thing about the NYT Magazine article is that it prompts more questions than answers, at least in me. It throws out so much information about breast cancer. Triple negative, which the doctors say I have (or am close to having), is not a good thing. It’s highly aggressive. This got me searching the net further. Secretory cancer, found in one percent of the population, is almost always triple negative, but it’s extremely slow-growing and highly treatable. Huh? Then again, it has a higher incidence of recurrence and more likelihood to metastasis. Hmmm? I’m compiling questions for my doctor next week. All the information is too hard to process on one’s own. The reality is each case is different. Each woman is different. It seems we have no choice but to rely on our doctors, our allies on this journey.


Tuesday, May 14, 2013

Magical Realism



     I believe in holding fast to dreams. That's why in February, I started a six-month online screenwriting intensive with a Hollywood maverick and a cohort of 35 writers from across the country. There were daily assignments with a 24-hour turnaround. I conceived 50 ideas, stalked friends and family for their feedback, chose one high concept and began outlining a feature length screenplay. It was fun and I made good headway.
     Since Easter, I’ve been derailed. I'm backlogged 20-plus assignments. Life has been interrupted. My oncologist warned me of this.
     But I’m thinking this could be the part of the Hero’s Journey where the ‘personal movie’ I’ve been blogging kicks it into another gear. It could be like the film “Adaptation” where things really get weird. Or simply the part where I up the action because action is what heroes do. Action makes people feel good.
     I’m feeling great and I’ve got 9 days before my next chemo treatment will knock me down a notch. I’d like to pick up where I left off with my project and see how much headway I can make.
     This I know: creativity works in wondrous ways particularly when you are open to the possibilities.
     In January I was compelled to paint after not touching a paintbrush to canvas for 30 years. I did two landscapes inspired by photos taken on our Christmas trip to Wisconsin.  In both paintings, I strayed from reality and added characters. The one on the left depicts the heart of the farm, a decomposing old barn, and inspired Amish folk, including a child in a red coat reminiscent of my daughter Mattie’s at age 4. I see breast when I look at that barn now -- and light on the other side. The one on the right inspired me to paint a man looking at a barn, which casts a shadow like a church. The man has just made a snow angel. The man reminds me of my Dad, who I lost five years ago. It’s like he’s there for me. 

 
           
     In my screenplay in the works, my heroine Dabny is the new first lady of the United States. She’s a dabbling, artsy type who needs an initiative and is hassled by the press secretary to get one. Instead, she’s distracted by historic paints she finds in the bowels of the White House. The magic begins when she discovers that whatever she paints comes true -- and she sets out to change the world.
     That's the premise. I need to see where this goes.
           

Sunday, May 12, 2013

Lack brings inspiration


Terry Gross interviewed Ray Bradbury on NPR several years back and I heard a replay of the broadcast after his death last year. Gross commented on how Bradbury detested technology (he didn’t use a computer, never owned a car). She asked him how a writer of his caliber of science fiction could imagine the amazing worlds he did while avoiding all forms of technology?
       He responded, “It’s lack that gives us inspiration.”
       This fascinating idea strikes me as opposite of ‘write what you know.’ Do those lacking in love write the best love stories, those lacking freedom the most compelling escapes, those lacking in stability the most emotionally-centered dramas, those lacking in mothers the most maternal stories, those lacking in health the most comprehensive wellness advice?
       The idea of lack bringing inspiration goes for writing -- and reading too.
       Earlier this week, lacking in joy and lacking in words to express what I was feeling, I spent the morning reading from a random stack of books at my bedside.  I pulled a 1972 bright red anthology I’d picked up at the 4th of July book sale in Condon, Oregon, our annual trek to the desolate high-desert half of the state. Entitled “The Joy of Words,” it was filled with classic poetry and essays from writers of yore. I had scarcely noticed the “Joy” in the title until Ron commented on it, finding it particularly apt that I chose it to read.
       There were essays by Thomas Jefferson, Abraham Lincoln, Benjamin Franklin, Carl Sandburg, Mark Twain, Will Rogers and Erma Bombeck along with poems like “Invictus” by William Ernest Henley and “The Way of the World” by Ella Wheeler Wilcox (Laugh and the world laughs with you, weep and you weep alone…). Of all the pieces in the book, the one I remember most was a sports essay by Ira and H. Allen Smith written about the Brooklyn Dodgers, pinpointing the details of one game in 1926. The Dodgers had bases loaded when Babe Herman hit a line drive, and in an unusual chain of events, three Dodgers found themselves on third base at the same time. Admittedly I’m no sports buff, but I didn’t recall ever hearing the anecdote and I got to thinking how historical tidbits are gone once they’re not repeated and how important it is to document the happenings of one’s life (even when no one is listening) or else they are lost forever. This story was the talk of Brooklyn at the time and Bennett Cerf, who I only remember from watching ‘What’s my Line’ as a kid, expanded on the story by sharing its repercussions throughout the city. Apparently, years later, a later-comer to a Dodger game was advised to hurry up by an enthusiastic fan in the stands. “You’re missing something big,” the caller yelled down. “The Dodgers have three men on base.”
       “Yehr”” cried the fan. “Which base?”


       There are many ways to find abundance and three men on third (however short-lived) could be one. In the days ahead, I’m keeping any and all bases loaded with whatever brings me joy.

Saturday, May 11, 2013

Deliverance


One perplexing aspect about documenting a Hero’s Journey while you’re living it is that you really don’t know for certain which of the 12-points on the cycle you are reaching until after the fact. (It’s comparable to writing a memoir without the looking-back perspective of time.) Midpoint through the journey is the Ordeal, the big battle, the dark night of the soul. Just before that is the Approach, the spot where one plans for the battle, the outlook for what’s around the next bend.
     I anticipate my Ordeal will be my surgery and the Approach could be where I am at now, planning for that event. I was thinking about this yesterday, then ring, my surgeon’s office called and set up a meeting for the end of next week. I could write appointment but my relationships with my physicians feel like give-and-take collaborative sessions, rather than appointments with medical experts. I find this particularly indicative of how far we’ve come in 2013.
     My 16-year-old diary from 1972 lists all the movies Ron and I saw as teens including many which fall into the pattern of Hero’s Journeys: Romeo and Juliet. Funny Girl. Gone with the Wind. 2001. Planet of the Apes. Ryan’s Daughter. Billy Jack. Love Story. 20,000 Leagues Under the Sea. The Godfather. Airport. Kansas City Bomber. What’s Up Doc? Bad Company. Fiddler on the Roof. Jeremiah Johnson. Deliverance. Walking Tall. Shaft. Virgin Spring. The Graduate. Brian’s Song. Sleeper. Great Gatsby. American Graffiti. Godspell. Jaws. Bob & Carol, Ted and Alice…
     Of all the films, the thriller “Deliverance” (1972) left the strongest impression on me.  The scenics were compelling because we frequently canoed the Wisconsin River. They were also groundbreakingly experiential at the time; I was running that river with Burt Reynolds. Secondly, I was drawn to “Dueling Banjos” and still want to learn to pick and play (and maybe this will be the summer to do it.) But "Deliverance" is also a Hero’s Journey. 


     In the story, four city guys decide to leave their ordinary world and take a ride down a scenic river in Georgia before dams change the river forever. On the way, the men meet suspicious locals. Tests and trials start happening the mens’ first night on the river. The group is soon separated; two of the men are accosted by a pair of shotgun-wielding hillbillies. The hillbillies tie one man to a tree and violently attack the other. As the hillbillies prepare to continue with the attack, the other two arrive on the scene. Using his bow, the hero Lewis (Burt Reynolds) kills the attacker and scares off the other man. This gets us through the ordeal. From there, the story continues with the men on high alert, and, by the end, all characters have changed. 
       My antagonists are two spots of cancer and, using her bow (or rather scalpel) my surgeon will extricate these enemies (hopefully suppressed by the chemo.) That’s where we’re headed with my story. The music and action, I need to think about a bit more. Right now, I’m focused on navigating the river.   

Friday, May 10, 2013

Unremarkable



I still have my diary from when I was 16. It does not show literary promise. It’s not gushing with raw emotion or poet underpinnings. Most entries are a few sentences long. For the most part, I recorded whether Ron made me mad that day or if I was bored. I also logged the movies we saw (whether we actually watched them from our back row seats or not) and had a coding system for other matters worthy of document. Apparently, I was worried one of my three brothers would find my secret diary and read it. 


            Ron and I still go to movies but no longer sit in the back row. (Children, this is what happens in real life.) Early 2013, we started a tradition of Friday Date Days, taking in a matinee since we both had the day off. The standing date worked well. With the kids at school, we could get through a movie without having a text requesting a pick-up or transport. Lately, though, our schedule has changed.
           “It’s Date Day,” I explain to the amiable technician, Abbe, who has taken pictures of me on two different occasions in two separate buildings on two kinds of imaging equipment.
           She peers at me, then over at Ron. “I think you two might want to work on your idea of fun.”
           In truth, I am thankful, make that lucky, to have a date throughout this process. If my situation had occurred 20-some years ago (at an age that more closely matches my case), when I was an already overloaded single parent of one son, striving to keep my business afloat, my sink unclogged and my lawn mowed, each day would have been hell. I have it easy now. My 2/3-time teaching job meshes with my chemo schedule. Beyond that, if I’m not feeling up to it, the writing (cooking, cleaning, dog-walking, pleasantry-making) waits.
          Sometimes writing waits so long friends and family email and call to check in. Thank you for calling, Chip, Cinda, Grandma. I’m still figuring out how to convey the I've-felt-like-crap feelings into words anyone would want to read. It's an obstacle I'll get through.
         The thing that’s different about my “Hero’s Journey” Dates versus movie dates is that there’s generally tea (served by kindly volunteers) instead of popcorn. So far, I prefer the mint. The other difference is that most of these dates come with a written report so I don’t need to document notes in a diary. The language is vastly different than what you’d find in a personal diary. One of my now favorite words was repeated on a recent report describing my lungs, heart, bones and a smattering of other organs: unremarkable.
         Who would have guessed an unremarkable date could be so exciting? 
 

Sunday, May 5, 2013

Easing the pressure



My once-low blood pressure was high at my last two doctor appointments. This could be attributed to anxiety about the chemo that followed. But it’s also a call to action to get back on track with my cardiovascular program.
     I haven’t been to the health club for a month. I haven’t been walking regularly. I’ve been preoccupied in mental and emotional distractions, tests and appointments of this journey along with teaching and every day life.
     But what I need most is to get moving. My coach Ron, the most diligent and disciplined exerciser I know, told me this. He always tells me this. It’s hard to measure up to his model. However, I don’t want any additional complications to my health. When I go back to the doctor in three weeks, I’d like to see lower numbers.    


     My friend Sally went through breast cancer 10 years ago and is doing great now. We talked for a long time on the phone. Diet, of course, is also related to blood pressure. I tell Sally how I’m trying to eat healthy (lots of fruit and veggies, staying away from high-fructose syrup) but how I don’t want to obsess and make diet the focus of my life.
I ask Sally if she still drinks green tea. She says no, she doesn’t like green tea. She echoes lots of fruits and vegetables, little red meat and the moderation message.
     Ron eats for sustenance and health. He eats the quesadilla, but refuses the tortilla shell. He eats the quiche but not the crust. He concocts morning cereals full of seeds and grains and nuts. He avoids meat and, lately, carbs of all kinds. A treat to him is munching on celery in front of the TV. (We’re trying to negotiate cutting it in slivers.) He dissects every food that crosses his plate. This isn’t a new thing. Like his exercise regime, it’s a lifetime thing, one I’ve learned to accept.
     But for me, food is life. The doctors’ advice is essentially: balanced diet and moderation. From what I’ve read, though, foods, like sugars, are best avoided or greatly minimized.
     I’m starting to browse the net. Here’s what I found. Unlike other cells in the body, cancer cells try to live forever.  Sugar or glucose supplies cancer cells with the energy necessary for growth.  Cancer cells have defective mitochondria. The only proven way to grow new mitochondria and enlarge existing ones is to exercise. The more vigorously you exercise, the greater the growth in size and number of mitochondria. In short, there’s something at the cellular level that’s saying “exercise.”
     Sally opts for moderation in food but the one thing she’s religious about is exercise because the studies that have proven exercise to be associated with reduced reoccurrence of cancer. Sally’s also a nurse.
     Sally and Ron are both mentors and allies on my journey. I’m listening.

Friday, May 3, 2013

I'm special





     Yesterday was another twist to my story.
     I had the option to stop chemo.
     My case is complicated. My doctor is being fully transparent. There’s background buzz among the extended experts behind my case. There is not consensus as to what they’re dealing with. If we were talking about a book, buzz would be a good thing.
     Warning: this is a more medical posting.
     Eighty percent of breast cancers are Ductal. The other 20 percent consist of a variety of cancers, Secretory Breast Cancer being one of them. Secretory Breast Cancer is rare. It generally hits women in their mid 20s and is highly treatable. Mine was identified by the pathologist as “having Secretory features” versus being “Secretory” which apparently is an important distinction because “features” means it could contain some other combo of breast cancers. Because of that factor, chemo was recommended before surgery to kill any and all potentially flighty cancer cells.
     My “case” was brought to the Tuesday “tumor board” (yes, they have a tumor board!) early on and consensus was reached. My doctor also consulted with other oncologists and pathologists not at the board. Then my “case” was discussed at a cancer conference (talk about exposure!) last week and was classified by some as “Secretory” which means the chemo was not necessary, at least not as a first treatment plan. Others feel you cannot be sure exactly what you are dealing with until you do surgery and get it out, rather than go by the pathology sample.
     “So it’s an evolving science then?” I asked and my doctor said, “not in most cases.”  I guess this makes me special. 


     She laid out the options. We could halt chemo.  Do the surgery now. Get the absolute answer as to what this is. Resume chemo if necessary afterwards.
     The negatives of this course?  It’s not good form to halt chemo. If we need to resume chemo, there’s a chance the body would have built up resistance to it and it wouldn’t be effective.
     The negatives of continuing chemo even if I don’t need it? The side effects. There aren’t long term side effects, she said, but it’s a matter of how I’m handling this now. I’m handling it fine now. I’ve lost my hair, but I’ve already accepted that. And so have my kids as long as I don’t take off my hat or wig.  I’m getting steroids for five days so I get to pretend I’m a hero like Lance (hence this 4 a.m. posting). I know there’s a potential for intestinal issues after my three days of anti-nausea medicine. I know not to eat a big fat Greek gyro with feta that first medication-free day. I now know the BRAT diet (bananas, rice, applesauce, toast) to calm things if need be. My friend who went through this 10 years ago said chemo was three days of being drugged and then she was fine. I expect the same.
     I’m good.
     I’m staying the course. I’m already halfway through.
     My doctor said there shouldn’t be any more surprises.
     We’ll see. :)
             

Wednesday, May 1, 2013

Amping up


Two six-word stories:

1. Prescribed steroids today. Prepping for tomorrow.

2. Tour de Chemo, here I come!