Dragon Power

     My friend George Ivan Smith promised to make me an angel bread sculpture in a few months to celebrate the end point of my Hero's Journey. But to tide me over, he made me this dragon. He delivered it warm, fresh from the oven and insisted it was made to eat. While I don't generally eat art, I ingested this beast with butter and jam. I feel the fire in my belly and I'm ready for battle because of it. (My kids helped me indulge after getting quite a chuckle when they spotted it resting on our counter.) 

      Here's a poem by Jack Prelutsky (from an accompanying book George lent me) that speaks to this moment in time, and perhaps says a little something about positive thinking.  

If you don't believe in dragons, 
It is curiously true
That the dragons you disparage
Choose to not believe in you.

Ingesting Sunshine

     When I visited my internist to have my blood pressure checked, she asked what medications I was taking.

     “Nothing,” I said.  I’d stopped the daily aspirin and the fish oil to avoid any bleeding issues during surgery. While I was at it, I halted everything including my daily Calcium and Vitamin D.

     "You should be taking Vitamin D,” she said.

     So I restarted my daily Vitamin D supplements and remembered why I started taking them in the first place. I was woefully deficient in Vitamin D, like many of us in Oregon. We simply can’t count on luscious sunny days like today. And if you don’t get enough Vitamin D naturally through the sun, you need to load up on salmon, tuna, sole, milk, eggs, mushrooms or beef liver! -- or take supplements.

    
     Research supports the benefits of Vitamin D supplements for a number of reasons.  Here are a few recent findings:

     In one study, kids getting Vitamin D supplements showed a 47 percent lowered risk of cavities. (Nutrition Reviews.)

     In another, healthy adults taking 800 IU of Vitamin D supplements per day experienced lowered blood pressure. The top number fell by 10 points on average after a year and the bottom BP number fell by four points. Vitamin D was also responsible for lowering heart rate from 74 to 70 beats per minute. (Nutritional Influences on Bone Health) 

     Low Vitamin D levels impact pregnant women. In 31 studies of pregnant women with Vitamin D levels less than 30 ng/ml, there was an increased risk of developing a complication such as preeclampsia or gestational diabetes.

      Low Vitamin D levels have also been linked to increased incidence of suicide. One study showed that people with the lowest levels of Vitamin D, less than 15 ng/ml, were roughly twice as likely to commit suicide as people with Vitamin D ranging from 17 to 41 ng/ml. (PLOS One). 
     What’s more, researchers suggest that Vitamin D curbs the growth of cancerous cells.  A report presented at the latest meeting of the American Association for Cancer Research (AACR) showed a link between increased Vitamin D intake and reduced breast cancer. It found Vitamin D to lower the risk of developing breast cancer by up to 50 percent.
     Not everyone is as certain. The National Cancer Institute says claims of Vitamin D’s cancer fighting benefits are inconclusive and unclear. 
     The bottom line is: sunshine makes you feel good. And from my vantage point, Vitamin D’s the next best thing. Mine come in adult gummies.

Teachable moments

     Teaching at the community college feels like important work. Students bare their souls on the page and I listen and respond. Most students are in their 20s, but this past term I had ‘kids’ ranging from a 16-year-old high schooler to a 60-something retiree.
     Each night class, we sit in a circle and share; personalities range from anxious to theatrical, inhibited to cocky, sweet to angry.
     Each session, there are surprises on the page and in the room. By night end, my mind is nimbler, my knowledge of diverse lives expanded and my understanding of the Millennial generation richer.
     The last class of the term, we go around the circle and share inspirations: a quote, book, movie, musician, artist or idea. This term, I toyed with the idea of sharing my personal story, reiterating the points I’d reached on “The Hero’s Journey.” This would be a good review of the story model we talked about the first night of class, and not just a review, but a working tool of one positive way to cope with the obstacles life will undoubtedly throw your way.  

     Monday night’s class came and went; I opted against being a downer with my story of breast cancer. Besides, no one knew I wore a wig. Why ruin the illusion now?
     On Wednesday, I had a surgeon appointment and mentioned I was toying with the idea of sharing my chemo, my hair loss, the obstacles I’d reached so far on “The Hero’s Journey” with my class that night.
     “They’ll probably say, ‘Sucks for you!’” she said.
     We laughed.
     Wednesday night came and, again, the timing didn’t feel right to go into my personal story. But a day later, I recapped my tale via the 12 elements of “The Hero’s Journey” and sent an e-mail to my Wednesday night class.
     Five students responded with e-mailed notes. One student, Larry, gave me permission to share his story.
     The funny thing is Larry probably didn’t need to hear about a good story model to apply to life’s struggles. To share the power of “The Hero’s Journey” with someone like Larry is hammering home a coping mechanism to someone who’s already spent a lifetime soldiering through obstacles.
     Larry is a good decade older than most of the community college students. He struggled with ADHD and dyslexia as a kid. He hated English teachers and never learned to read until his mid-twenties when he finally taught himself. He’s struggled with writing ever since, working on bringing to life the stories he ‘composed’ in his mind while growing up on fishing boats in Alaska. He attributes a kind and patient writing instructor at one of the community college campuses as honoring his story-telling ability and making a difference in the way he viewed his writing.
     Distractions continue to plague Larry and this past term was particularly difficult. For starters, he had a hefty workload and then he had to move. For much of the term, he lived in two places to accommodate bus travel to school.
     Despite his personal challenges, Larry wrote me a three-page letter in response to my email. Here’s an excerpt:
     “Your letter made me realize how many of my obstacles were trivial. We all have a space where we keep our troubles. No matter how big our troubles are, that space is the same size. Each of us takes our troubles and expands them to fill that space. We say to ourselves 'look at all I am going through. No one is enduring my tribulations.'
     “The reality is most of us expand the difficulties we experience to fit our space for our troubles, never thinking some people have to deflate their troubles to fit into that space. Your story is a testimony of how little all of our problems really were during last term…
     “…I hope that very soon you will be back like the rest of us having to inflate your troubles to fill your trouble space. Better yet after this storm passes may that space be so big you can never fill it.” 
     His letter made me cry. It also made me remember why I like teaching so much: I learn as much from students as they do from me.

Questions

     If I gauge what to document here by how much the incident impacted me emotionally I have today’s topic.
     By all accounts, I’m in the waiting zone -- on the approach to surgery. As soon as I feel 100 percent from my final bout of chemo (give me two more days) I’ll ramp up my workouts so I’ll be in good shape for surgery. Apparently, surgery is equivalent to an intense workout.
     The purpose of the pre-op appointment is to make the surgery plan. The first thing Dr. Garreau asked me was if I wanted anything done with my right side. She started to speak and I started to speak and then she waited for me to go first.
     “Well, no,” I said. There’s no cancer on my right side. Why would I want anything done?
     She nodded. “Okay,” she said, “because nothing you do to your right side will cure the cancer on your left.”

     I started tuning into the nuances of language. Thought we were going to be laughing about this in a year. Thought she had promised, “I will cure you.” My mind rewound to the negative news couched in positive terms by the breast center nurse who called me at Disneyland. “If you have to have anything, this is good to have,” she said. Then the follow-up call from a doctor from my OBGYN office on my return home. When I told him I’d already heard the news, that it’s a low aggressive cancer, the best kind to have, he stopped me. “Well, cancer is cancer,” he said. Add to that, the weeks of conversations with the doctors including all of the unknowns about my case. And now the discussion of lymph node involvement, how the imaging doesn’t reflect any involvement, but we won’t know for certain until after surgery. We won’t know for sure. 
     What do I want done with my right side? The question hung over my head. She didn’t say “statistically speaking you have a higher incidence of … or medically speaking, chances of recurrence are greater on the right when you have it on the left.” She simply posed the question.
    The more I thought of it, the more uncomfortable I became.
    The next day, I had my last chemo and met with my oncologist, Dr. Vuky. She said “Did you make a decision with Dr. Garreau regarding surgery. Will it be a bilateral mastectomy?” 
    “No, just the left side,” I answered.
     Dr. Vuky nodded. And days later, here I am, still wondering what was that about? Why are they asking me if I’m having both breasts removed when this all started with a lump so miniscule you could hardly feel it?
     I brought it up with the nurse coordinator, Ellie, who checked in with me during chemo.
     “Many women make that decision for cosmetic purposes.”  She went on to reiterate that if a double mastectomy was something the doctors recommended, they’d have specified that. “Sometimes in very young women, they recommend both,” she said. I asked her lots of clarifying questions and none of the answers were that satisfying. 
     I’m focused on the left. That’s the problem area. That’s what my gut tells me to do.  If they’re going to ask me the question, I’ll give them my answer.

Good luck on a stem

     I've received so much from friends and family in the past months. Gifts, cards, messages, miscellany kindnesses. Each one has touched me. It's almost a shock to the system to have folks from your present and past reach out to share how much they care about you -- or even remember you. There's this off-balance feeling of not being deserving. Could be discomfort with being the center of attention. I'm still figuring this out. If I've delayed sending timely thank yous, it's because I'm overwhelmed and still processing the extent of the kindnesses.  
      Ron brought me this gift the other day. He's a zen-like guy with a natural intelligence and some days his world revolves around his walk in the neighborhood. With the last of my chemo treatments, I've been in the need for external stimulation and had made a comment about how we needed to broaden our world a bit. Add some excitement. Something external, not internal. So he went for a walk and came back with the biggest four-leaf clover ever in his small patch of world. It's a good four-inches across.
  

     This is not new. Ron has always found four-leaf clovers and so have our girls. When they were little, they had a routine of lowering to their knees whenever they'd spot patches of green surrounding trees and poles. More times than not, they came up grinning with good luck on a stem.
     Me, I've never found a four leaf clover. Could be I never really searched. Or have I simply missed them all along?   

Duct Tape Update and more

      I’ve stopped the duct tape treatment at my wrist where the IV from my second chemo treatment exploded into my vein, causing a quarter-sized clump, a.k.a. clotting or thrombosis. The duct tape wasn’t helping diminish my bump.
     However, I still stand by the duct tape wrap for joint and muscle pain on feet and knees. As far as tear-off pain, it doesn’t hurt in the feet or knee area since there’s not much hair and it didn’t hurt on my inside wrist for the same reason. But as some of you pointed out, there would be tear-off pain if you cover a hairy arm or other hairy body part so user beware (or shave first.)
     The clot at my wrist bothered me more this week when a small pea-sized bump or clot suddenly appeared on my inner arm. These body changes concerning my veins freak me out. I applied heat all day and massaged the bump. By the day’s end, it diminished in size. I’ve kept applying heat intermittently to the wrist bump as well, but no real change.
     So when I went in for a pre-op surgeon appointment on Wednesday that was my main concern. I addressed it with the nurse and Dr. Garreau. Ron got to sit through my repeated story. It’s a story I repeat to absolutely every medical person I’ve met in the past month.
     And here’s where having a good dialogue with your doctor comes in.
     “This is just really bugging me,” I said, holding out my wrist. I shared this with the doctor last visit as well.
     She checked my arm and compared it with my other, commenting it looked a bit swollen. Then she inspected my wrist and felt the red bump, reiterating what she told me last time, that it could take a long time for it to go away.
     “Does it hurt?”
     “It’s tender when I touch it.”
     “How about when you don’t touch it?”
     “Well, no, but it just bugs me having this clot.” And then I got to the truth of my story. “It scares me. I mean what does this mean?”
      And for local readers, you may understand this isn’t as much about me as about the loss of our beloved assistant principal at our neighborhood grade school a half-dozen years ago this summer. Bernard was 41-years young and had just undergone routine knee surgery. He was a gregarious personality and a talented musician who touched kids in our school by visiting classrooms and playing his guitar. His story, as I understand it, is that he went back to playing in his band too early after surgery, experienced a blot clot during the gig and died suddenly. His loss shocked the community.
     I told my doctor this story.
     “No, you don’t have to worry about that. This is superficial clotting. It can’t go anywhere. It cannot travel to the lungs, which eventually stops the heart. It could possibly go up the arm and then, bleep, stop. This is not going to kill you.”
     “Can I massage it then? Ron’s been telling me I should massage it.” Ron always gives me do-it-yourselfer medical advice, but lately I’ve chosen to clear it with those who have M.D. after their names. I admit I’m ignorant of how the body works.
     “Yes, massage is okay.”
     So I’ve been massaging it for a day and it appears to be getting smaller. It’s less red. Most of all, I’m no longer worried it’s going to kill me.
     And some of us in my house are hoping I won’t have to repeat this story again. Toward that end, I’ve discovered yet another use for duct tape!

The Stuff of Life

     Here's a little miracle I found in my inbox last night. An image of an angel bread sculpture made by my friend George Ivan Smith, who's been making bread sculptures since 1969. He says this image of an angel he made last year is my promissory note for a real one to come at my beckoning. I want one with butter and jam after this journey is completely over -- I'm thinking six months.  

     In the meantime, I do feel surrounded by angels.

Just Saying

    My fourth chemo treatment (and hopefully last ever) will be tomorrow.
    I've been thinking how perhaps my "Hero's Journey" started last fall when I met up with a group of MFA friends in New Orleans. We spent an afternoon moseying in and among the art and artists at Jackson Square. My friend Marjorie commented on how she noticed I was attracted to angels. I've always loved the simple emotion of folk art but hadn't quite made that connection before.
     Here are a few pieces I bought which have significant meaning right now. 
     This painting --  "Can't Steal My Joy" by Sister Raya -- speaks to me each morning, especially in the days immediately following chemo.

And I wasn't necessarily thinking angels, but rather a tongue-in-cheek message for my teens with this metalwork by Jack Wittenbrink, crafted from debris from the ninth ward, an area of the city devastated by Hurricane Katrina. It says "My Mother is the Queen of All that Is."  There are angels as well as a demon child, and depending on how and where it's displayed, it casts the most amazing shadows.

And I love this acrylic painting by Cary Chunlee. It's far from angelic, but nonetheless quite appropriate right now.  I think of the voodoo doll as the Big C. Gotta love those eyes.

Tinkerbell

     My oldest child is 30, my second, 17, and my youngest, 15. This means I’ve spent three decades getting my kids to the age of 15. Over the course of those many years, we’ve had two cats, multiple hamsters, mice, goldfish, a canary, walking sticks, two bunnies, a dog plus a number of temporary guests, including chickens, guinea pigs and a turtle. I’ve cleaned fish bowls, bird cages and litter boxes; scoured alleys for walking- stick-food, a.k.a. blackberry leaves in rain and snow; walked both bunnies and a dog on leash.
     These facts are significant because truth-be-told, I am not a pet person. In particular, I am not a dog person. This is what some might call ‘dangerous writing’, particularly in Portland, Ore., where everyone has a dog and everyone loves their dog. That is not me. I’m the demographic who does not want the daily duty of caring for a dog. I don’t want weekend get-aways cancelled, curtailed or expensed by a dog. At this stage of my life, I want to write and do art and travel and have freedom from responsibility. 

     I made my non-desire for a dog clear when our girls began their letter-begging campaign to get a Yorkie-Poo two and a half years ago. I told Ron and I explained to our girls: “I do not want a dog. If we get a dog, this will be your responsibility, not mine.”
     And so it goes. Within a day of the girls’ campaign, we got a sweet spirited Yorkie- Poo, Tinkerbell. And over the past two and a half years, I’ve fed, bathed, walked, and cleaned up after her. Ron’s done his share of walking, but the teens have fallen short in stepping up to the daily routines. Despite constant reminders, they’ve dropped the ball. As their schedules get busier, their commitment to their beloved pet has decreased.
     I always believe the universe is trying to teach me something. So for two and a half years, I’ve tried hard to make doggie an essential part of my life. “You need to open up and embrace her,” I’ve told myself as I worked at finding enjoyment in the necessary chores. I especially enjoyed the end of our walks where I’d set her loose to run the last block home: “Go Tinker go, run like the wind,” I’d call and she’d race home, her ears flapping, a joyful sight.
     My resentment, however, has increased over the months and years as the bulk of the responsibility has landed on me. We’ve made threats to find her a new home but never carried through because, well, who wants to be the bad guy, and be responsible for taking away your children's pet?
     When my most recent bout of chemo-mood struck after last treatment and I had my Tourette’s outburst, I realized: Embracing this little creature, who is lying on the couch almost depressed, is not what the universe is telling me after all. The universe is telling me: Gail, set some limits.
      And so, with the help of a friend, we found a new home for our dog. She now lives on a half-acre with a dog door and a new owner who recently lost her beloved pet, someone who wants a sweet doggie as part of her family. My hope is she’ll have a magical life.        

     

Shades of gray

     Before I started on this journey, I didn’t want to give much thought to breast cancer. I tried to support research in small ways, but didn’t care to dwell on the disease. The reality is: breast cancer is scary. A shocking 12 percent of women will have breast cancer in their lifetime. That’s one in eight. We’re catching it early and treatments are better, but still.

     In my family alone, adding first cousins on both sides of my family, I have eight female first cousins, including myself, and three of us have had breast cancer. Adding in cousins by marriage and sisters-in-law on my side of the family, four out of 21 of us have had breast cancer, still significantly higher than 12 percent. One of my cousins was diagnosed the same month as me.

     I’m keenly aware that people might not want to linger on my blog reading about this topic. I’m also keenly aware that sometimes I don’t have anything positive to write about. When I first started on this journey a local friend, who’s been on this journey herself, told me I’d meet many angels along the way (and I have -- both in the form of friends and medical staff). She also wrote that at times the journey would be “dark.” 

      I didn’t understand the dark then, but I do now.

      For me, the effects of chemo feel cumulative, making the recovery from each treatment a tad lengthier. Here’s what I’ve experienced after chemo: I don’t feel like myself. After the steroids wear off, I’m cranky. Nothing tastes good. I have no motivation. I’m boring. I’m so boring to be around, I’m bored with myself. And whether that’s the chemo or the cumulative effects of visiting so many doctors, I don’t know, but it’s depressing. The dark, dank, wet weather after my last chemo didn’t help. I choose to not add to my cocktail mix by taking anything for depression. I’ve found that a week after chemo, I’m starting to feel like myself again.

      Last week, I visited my internist to have my blood pressure checked. The appointment was emotional. I’d been stressed for a couple days because I had to see yet another doctor. I was experiencing what I’d call ‘performance anxiety’ about my blood pressure. The tears came as soon as the nurse, a gentle male, took my blood pressure. The numbers were good. Low.

     I started sobbing.

     “What medications are you on?” he asked me.

     “Nothing other than the ?!?! they’re giving me in chemo.”

     He asked a few more questions. I answered curtly and then apologized, explaining that the chemo was making me cranky.

     “Oh, you’re not being cranky,” he said softly.

     I looked at Ron who sat in the nearby chair.

     “Oh, she’s cranky,” Ron said. 

     We both chuckled.

     The best way I can describe the extremes of my crankiness is that at times if you walked in on me, you might think I have Tourette’s.

     But extremes can bring about transformation. For one, in preparation for my next chemo -- which will hopefully be my last ever! -- I’m planning better. For starters, I’ll have a stock of my favorite comedians to watch (Eddie Izzard, Ricky Gervais, Steve Carrell). I’ll also have my foods of choice -- mashed potatoes and rice at the ready.

    My last chemo round resulted in a huge emotional transformation that has resulted in positive change in our household. I’ll share it in my next post. 

Beyond the usual side effects

Chemo can have side effects beyond the usual ones of general malaise and crankiness. These are disconcerting (okay, creepy) because they underscore the message that one’s body is no longer within one’s control.

After my first treatment, it took two weeks for my skin to recover from the tape at the IV site.

            Unrelated, ten days after my second treatment, I started itching all over and broke out in hives. After a couple days I took Benadryl and after three more days it went away. I’ve since learned skin sensitivity is fairly common with chemo.

            Just before my last treatment a distinct red mark appeared on my arm. Depending on one’s viewing direction, it looked like a parrot with a little hat or a dove in flight or maybe a king’s crown. Before the chemo session was over, it began to fade. In the writing world, we’d call it a shape-shifting character. The involuntary tattoo is gone now and I am thankful.

            Also before my third treatment, I noticed a quarter-sized knob at the previous IV site at the wrist. The doctors say it’s a blood clot (superficial thrombophlebitis) resulting from leakage of chemo chemicals or blood from the vein, which is smaller at the wrist. The problem is the knob is hard and sizable and not changing. The oncologist says it may be there for months or longer. What’s more, my vein may never be the same. I’ve taken the prescribed antibiotics like a dutiful patient. I’ve also been doing hot compresses, which seem to have a temporary positive effect, but nothing lasting.

My primary ‘hero’ action, which I took at the third treatment was a directive to the nurse: stay away from the smaller veins on my wrist or hand. Apparently these veins are used often and without incident, but I won’t let anyone risk this again.

My second action is to listen to Ron, a.k.a Dr. do-it-yourselfer. He introduced me to one of his secret remedies a few years ago for when my feet ache. (This remedy may sound laughable but when the joints on your feet hurt, you’ll try anything.) Here’s the treatment: Ron wraps my feet at night in duct tape. I wake up the next morning and they are as good as new. He shared this miracle treatment with his mother, who has knee issues, at Christmas time and she’s now a believer of the duct tape wrap. For those of you who know Ron, you know he has duct tape at the ready. He’s also a recovering athlete, who had years of experience with athletic wraps for injuries. The duct tape works in a similar fashion; it keeps the heat in, keeps the wound area warm. In short, we have it on hand. We use it.  And my skin does not react to duct tape. 

I even have fashion colors of duct tape on hand from prior craft projects. I’m using a skin color and I’m keeping my wrist knob covered at all times; I’ll report later on whether it works. I'm hoping.