,We don’t know what good we do when we do what we’re good at.

When I was first diagnosed with anal cancer I felt hopelessly trapped. My anguish and restlessness as I waited for my treatment plan to unfold was almost unbearable. During that challenging time something came into my life that allowed me an escape – The Office.

I’m not much of a TV watcher, but I will always have a special place in my heart for the actors on that show, especially Meredith.

During that dark time, my son, Craig, arrived with some DVDs. He knows my sense of humor. “You’ll love this,” he assured, as he forced his restless mom to sit.

At that point everything reminded me of my predicament, except this show. The goings on had nothing to do with anything I had ever known. I could watch it and have no “triggers” to bring me back to my unpleasant reality.

“Would you like to watch the next season?” my son would say as he loaded another DVD. I love him for knowing what I needed, and I love every character that gave me something to look forward to – an escape into serious gut-wrenching laughter. They helped me heal.

On Wednesday night, at The Farrah Fawcett Foundation Fundraiser, A Tex-Mex Fiesta to benefit Stand Up To Cancer I got tell Kate Flannery how grateful I was, how grateful I still am!

Oh yes, and I had the pleasure to meet George Hamilton. But that’s another story.

Cancer is like walking through a door into alien world. Recently, I’ve come to think of this world as having outposts, stop-off points where I can get perspective
before proceeding on my journey.

This past week I traveled 12,304 miles. Aside from racking up points for future flights, the excursion nudged me forward. I didn’t realize I was ready to move on, nor that I had, until I shared my experience with my cancer support group. In fact, it wasn’t until our meeting was over that my transition dawned on me.

 This was not my first trip alone to Brazil. It was the third and my second on Aero Mexico. The first time I’d flown this airline was a year ago. I was flying to Sao Paulo for the birth of my granddaughter. My son had sent me a ticket. This time, despite last year’s travails, he’d chosen Aero Mexico again. The price was right, and now Lillie was having her first birthday. I thought, oh no, here I go again. I thanked my son and daughter-in-law and assured myself that I would do better this time, that this time I’d be less disoriented.

For the Aero Mexico flight attendants, Spanish is no problema. But for me, well…Even though I faithfully attended weekly classes for four years and was at least fluent in diabetes, it had been seven years since I’d used Spanish in my work. Except for interactions with my gardener, no tuve opportunidad de practicar – unless I was flying Aero Mexico, of course.

On last year’s trip the onboard announcements were garbled in both my native tongue and Spanish. As we landed, I picked up some words that indicated that when I changed planes in Mexico City something was about to happen to my luggage. I was clueless that my checked bags (two, gigantic ones, jammed-packed with baby gear) would be again subject to inspection. I was equally unclear about the need to go through customs. Worse yet, the forms to declare my presence and purpose for being in Mexico were not passed out on the plane where I could have asked questions. So once in the terminal I found myself floundering around with a drug-sniffing dog, wondering if the various foodstuffs I’d packed would land me in jail. I passed. Guess they were more interested in sniffing for drugs than maple sugar candy.

This year I was more prepared, although no more fluent. Conveniently, the customs forms were passed out on the plane. Thank God! While I joined the line to wait for my turn with the grim-faced officials, volunteers checked to make sure I had filled out the form correctly. No dogs, this time, and I had a singular, much lighter suitcase to deal with.

I had an unforgettable visit with my son and his family and made it back and forth to South America with only jet lag. My accomplishment didn’t occur to me until it was mirrored by my fellow survivors making me realize how truly amazing I was…am!

My cancer treatment had rushed me from a place of pride in my fitness and stamina to one of almost instant vulnerability. After chemo and radiation, things I had always taken for granted like expecting my body to behave appropriately now became a point of weakness. The downward slope was quick and remarkable, the journey back less so.

My friends reminded me that the someday of near normal that had seemed so elusive was reflected in this recovering body. That five years ago this body couldn’t make it around the block without support. This was the same body that couldn’t trust its bladder or bowels for a short outing. The realization was exciting. Time had healed and even restored a little of my pre-cancer arrogance.

A moment of recognition with my fellow travelers once again shifted my focus – sick to surviving, anxious to confident, around the block to around the world.

 What a journey!

http://www.ucsfhealth.org/michael.berry
Chemo brain strikes again!

How could I have left out one of my favorite speakers of The UCSF Forum evening – Dr. Michael Berry? 
The final professional speaker was anal dysplasia specialist. Dr. Berry. He helped pioneer the technique of high-resolution anoscopy (the procedure we love to hate) to examine and biopsy abnormalities in the anal canal. He is involved in studies to develop and evaluate more effective and better-tolerated therapies for anal dysplasia. Kinder and gentler therapies are coming from his direction.

On May 13, 2014 in San Francisco a Public Educational Forum addressed the short and long term quality of life issues that effect anal cancer patients after chemotherapy and radiation.

The event was a collaboration of  UCSF Helen Diller Family Comprehensive Cancer Center, The HPV and Anal Cancer Foundation and the Farrah Fawcett Foundation and was co-sponsored by the UCSF Alliance Health Project, Project Inform, Shanti Project and the International Anal Neoplasia Society.

Dr. Joel Palefsky, of the Anal Neoplasia Clinic UCSF and President of the International Anal Neoplasia Society http://www.ucsfhealth.org/joel.palefsky
and Justine Almada, Executive director of the HPV and Anal Cancer Foundation http://www.analcancerfoundation.org/
opened the event, which was the largest gathering of anal cancer survivors –EVER.

Dr. Palefsy discussed his $89M grant to study anal cancer. The study will focus on determining the effectiveness of treating anal high-grade squamous intraepithelial lesions (HSIL), which are caused by chronic HPV infection. The study will have application to early detection and treatment of other HPV related cancer and in reducing the incidence of anal cancer. “Given these strong biological similarities, it is very possible that biomarkers and treatments identified in the study will be applicable to cervical and HPV-associated oral cancer as well,” said Dr. Palefsky.

For those who didn’t know, Justine Almada introduced attendees to the amazing work of the HPV and Anal Cancer Foundation. Justine told us about her mother, Paulette, who was diagnosed with stage IV anal cancer in 2008.

She and her siblings saw first-hand how few resources were available for anal cancer patients, caregivers and providers. After their mother’s death, they started a non-profit to advocate for much needed attention to the disease, to provide services, such as support groups for caregivers and patients, and to fund research in an effort to improve the therapeutic standard of care that has remained the same for the last 30 years.

They understand that anal cancer carries an incredibly difficult stigma. Many patients discuss the solitude they feel after being diagnosed with life threatening anal cancer, because they are not comfortable discussing anal cancer openly for fear of judgment.

http://www.analcancerfoundation.org/about-us/our-story/

She and her siblings believe that every cancer patient deserves resources, support and hope, including those with anal cancer. Through the HPV and Anal Cancer Foundation, they give other patients and their families the guidance, the information and the chance for saving a loved one’s life that they did not have.

Panelists, Dr. Albert Chang, Radiation Oncologist at UCSF http://radonc.ucsf.edu/faculty/physicians/chang_a.html
spoke about his work investigating the advanced imaging technologies, radiation therapy techniques, and targeted drug therapies that allow for the maximization of therapeutic effect while minimizing treatment side effects.

Katherine Van Loon, MD, MPH, Medical Oncologist at UCSF, a gastrointestinal cancer specialist with a particular interest in colon cancer http://www.ucsfhealth.org/katherine.vanloon
discussed the importance of diet and healthful lifestyles during and after treatment.

Allison Palandrani, DPT, Pelvic Health and Rehabilitation Center http://www.pelvicpainrehab.com/
spoke of the benefits of this specialized physical therapy to assist with pelvic health post radiation, including reduction of pelvic pain, incontinence and vaginal stenosis.

The professional presentations were videotaped. (Availability to be announced)

I was one of three thrivers who spoke. Our presentations were not videotaped, though we had the opportunity later to be interviewed. (Availability of those interviews will be announced) 

The evening before, I had dinner with Pamela Tom, the founder of HPV and Me
http://hpvandme.org/
In 2011 her husband was diagnosed with HPV-16 related throat cancer. During the course of her husband’s diagnosis and treatment, she spent hours on the Internet researching information about HPV throat cancer. Who gets it? What’s the prognosis? Why had she never heard about it before? What she learned was frightening: according to the American Society of Clinical Oncologists, by 2020, the number of HPV throat cancer cases will surpasses those of cervical cancer.

We talked about importance of education. Anal cancer is rare, but HPV related cancers aren’t. They are connected and they can happen to anyone.

                                My Presentation

It was the third time in a month I’d had the opportunity to speak about my personal experience with anal cancer. Last month I had been on two panels at American Association of Cancer Research AACR meeting in San Diego. For each of those, I had 3 minutes. At the Public Forum I had a bit more, but how does one tell of such a journey in 5 minutes?

As I sat waiting for my turn at the microphone, I flipped through 10 - 12 pages of notes. I’m always over-prepared, because I look at this from both sides – I am a patient, but I am also a health educator. I could talk for hours on the subject from either point of view. But, I asked myself what was my brief message to my fellow thrivers, not just about what happened to me, but what I saw as the bigger picture.

I decided to share:

·      That I am incredibly ordinary and that if this cancer could happen to me, it can happen to anyone.

·      That viruses don’t have morals, they just do what viruses do – they find places to proliferate.

·      That this cancer is not our fault. We didn’t do anything wrong.

·      That this cancer grows in inconvenient places

·      That not only did we need to support each other here in this room, but that we needed to take back the narrative and combat the mythology  about anal cancer and other HPV related cancers.

·      That we need to lift the stigma for ourselves, before anyone else will. That we need get rid of the yuck factor.

·      That it’s okay to acknowledge a perfectly normal part of our body, the anus.

·      That no one should die of embarrassment.

·      That in the future, my hope is that there will be a post HPV cancer generation.

·      Yes, that I’m talking about the vaccine.

·      That we look ordinary, even healthy, but if people could see our suffering, past and present, parents would be waiting in line to get their children protected.

·      That a hemorrhoid is not always a hemorrhoid. 

·      That we need to get the word out about early signs and symptoms. This cancer is curable if caught early.

·      That the future is hopeful. Research is underway that may open the door to a kinder, gentler treatments.

After a question and answer session, we doned our purple Kick Cancer’s Ass t-shirts and posed for photos.

https://www.facebook.com/analcancerfoundation

A friend once told me than every time she gets a hangnail, her mind blows up it up until she’s sure she’s dying of cancer.

You know the feeling – the ache or pain, the mole, the lump or bump that you’ve been trying not to think about? You’ve been hoping it will go away.

And now, you finally have health insurance. People in Washington are still fighting, but for the first time in years you can go to the doctor without risking your life savings. So, why haven’t you gone?

You confess to your closest friend that you’re overdue for a colonoscopy. You haven’t had a mammogram since forever… And you’ve got this hangnail! Catastrophizing and procrastinating are now your constant companions. What if they find something? What if I have cancer? What if…

May as well eat that box of chocolates. I'm going to die anyway. 

I’m imagining that a lot of people are struggling with getting back into the medical system after years of neglect and over-the-counter reassurances. I’m guessing that facing that first doctor’s visit is not unlike the first day of school (for those of us who hated school).

I’ll let you in on a big secret. Those of us who have had cancer, who have had surgeries and the worst of the worst – chemo and radiation, who have endured all the anxiety-provoking follow-up examinations and scans are not any braver than you are.

We still hate going to the doctor. We still fear at each check-up that this is going to be it. We still race ahead in our minds and turn every minor ache into a death sentence. We cancer survivors call it PTSD. But how about pre-traumatic stress disorder? How about the anticipation that the health-returnee is now putting himself through? You are not alone. Many are playing catch-up with their health, and most are terrified. Most have already self-diagnosed terminal illness. Most are probably wrong.

Ask yourself, what’s my biggest fear - Cancer? Diabetes? Alzheimer’s? When you think of it, can you feel that 1000 pound rock at the bottom of your stomach or that flight or fight response?

I’ve been told by a wise psychologist to delve into those feelings. Give them a place in your mind. Don’t fight them off immediately, because they will come back.

But, don’t entertain them forever either. Invite them in. Feel your terror, then let it go for now. Honoring your fear is not the same as giving in to it.
      
Break down this health maintenance project into small steps. Likely, the first should be to find a doctor, not an Urgent Care Facility. I mean a medical person who will get to know you and your needs. Check out that list that your insurance provider has given you, and look at it as if you are interviewing this person for a job. You are.

Your primary care provider is your link to the care you need either right away or in the future. This person needs to be qualified and accessible. That means that even though you may not enjoy seeing the doctor or nurse practitioner, you will at least consider this person a member of your team. Shop around. If you find yourself unsatisfied with your first pick, keep looking. Because once you find someone, you should be willing to do what he or she suggests (after all they are the expert) or to at least negotiate another plan. Communicating honestly is critical.

Next, make an appointment. Dave Ramsey suggests the snowball approach for getting out of debt. Pay off your smallest debts first. The thinking is that this allows you to see yourself making progress on what may have felt like an overwhelming task.

Some people like to jump in and do the scarier stuff first. Okay, go ahead and schedule your long-overdue colonoscopy. Only you know what you’re up for, but do something.

Denial and procrastination can be fatal, but that hangnail - likely not.

On April 7, 2014 I had the honor to represent the Farrah Fawcett Foundation as their patient representative at the AACR, American Association of Cancer Research Annual meeting in San Diego.

I participated in the symposia - the President’s Cancer Panel Report “Accelerating the HPV Vaccine Uptake: Urgency for Action to Prevent Cancer” – Scientific Advances to Help Achieve Policy Goals.

Nearly 1 in 4 people in the U.S. are infected with at least one strain of the human papillomavirus. HPV related head and neck cancers are on the rise. Yet, vaccines that prevent infection with the two most prevalent cancer causing types are substantially underused.

Worldwide, every year, more than 600,000 new cancer cases are caused by HPV, an infectious disease. HPV vaccines provide an effective, safe means of prevention. 

In the U.S., only one-third of adolescent girls and less than 7% of adolescent boys have received all three recommended vaccines.

The CDC estimates that increasing the HPV vaccination rates from the current levels to 80% would prevent an additional 53,000 future cervical cancer cases in the U.S. among girls who now 12 years old or younger. 

The Presidents’ Cancer Panel finds underuse of HPV vaccines a serious but correctable threat to progress against cancer.

The vaccine uptake is a function of initiation - the first dose, and completion - getting all three doses.

Missed opportunities on the part of the provider to communicate with both parents and children, both boys and girls, is the most important reason the U.S. has not achieved high rates of uptake. The committee recommended that Providers discuss the vaccine, that receiving the vaccine doses should be made more convenient and also that health care payers should reimburse for this cancer vaccine

Widespread adoption of the HPV vaccine requires comprehensive, targeted interventions aimed at providers, parents or other caregivers and at the adolescents themselves.

Later that day, the press event Stand Up To Cancer and the Farrah Fawcett Foundation, along with the AACR, SU2C’s Scientific Partner, with an additional gift from the HPV and Anal Cancer Foundation, announced the formation of a new research team dedicated to HPV – related cancer.

Ellis L. Reinherz, M.D., Ph.D, chief of the Laboratory of Immunobiology at Dana-Farber Cancer Institute, Boston and Robert I. Haddad, M.D. disease center leader for head and neck oncology at Dana-Farber, received a 1.2 million dollar grant.

They will lead the research to develop new vaccines and immunotherapeutic approaches for treatment of patients with HPV-associated cancers, including head and neck, anus and cervix.

“Our project involves the development of vaccines that stimulate immune cells to attack HPV-driven cancer cells,” said Reinhertz. “While we have vaccines to prevent HPV infection from taking place, these vaccines will help attack the cancers once they have already developed.”

Alana Stewart, president of the Farrah Fawcett Foundation spoke of her friend’s struggle with anal cancer. Of the research Stewart said, “I know that Farrah would be very pleased to see this project going forward.”

My presence at both events was to give a real face to HPV related cancers and to tell my personal story.

With approximately 4 minutes for each presentation and about 10 pages of notes, I could have spoken for hours. In the end what I said came from my heart and experience and the experience of other survivors whom I’ve gotten to know. I tried to tell our story.

I didn’t need to tell the researchers that HPV related cancers are everyone's problem.

“If this could happen to me, this could happen to anyone.

"There’s this view that people with HPV associated cancer did something wrong. These cancers grow in inconvenient and sometimes embarrassing places. I call it the yuck factor. As a nurse, the body has no places like that for me. Maybe that’s why I’m alive today. I lived a life of prevention. Yet, a tumor grew. How can we pick these up earlier?”

I told those assembled for the President’s Report, that I had been a polio pioneer in the mid-50s. In those days polio was visible and scary. My parents signed me up to be part of a double-blind study to test the vaccine. Can you imagine that happening today?

Perhaps, if people in the U.S. could see the ravages of HPV related cancers – hear the stories of lives forever altered, perhaps we would be eager to see to it that our sons and daughters are vaccinated against cancer.

At one end of the day was the hope of prevention, at the other the hope for the future.

“I am lucky to be alive and am grateful for the opportunity to speak out. Perhaps some day prevention and early detection won’t be a matter of luck.”

Dr. Reinherz  shared some of his thoughts about what my presence meant.

“Advocacy is extremely important. We need to rid society of the mythologies and bring awareness and truth. …funding to do science will be greatly helped via thoughtful commentary, offering a patient’s personal perspective. It truly takes a village and we each have a part to perform to conquer this dreadful disease.”

Take it to heart. We are all important in this struggle.

Two weeks ago, on my morning dogwalk, I caught my toe on a crack in the sidewalk.

I felt the oh-no as I braced for a scraped chin, hands and knees.

I didn’t have time to let go of the two leashes, so my head was the first to hit.

My neighbor found me bleeding and confused, sitting on the sidewalk, the dogs still in tow.  

The ER report read – contusions, abrasions, small lacerations, and a concussion!

My face was badly bruised. I had a headache and over the next few days found myself surprisingly irritated by sounds, specifically voices on some of my favorite radio programs. I was also tired, very tired.

As the week went on, I learned to give into the fatigue. My face was slowly changing shades, but my mind kept replaying the oh-no moment.

I see my toe catch. I realize I am falling, and then I don’t remember…
I see my toe catch. I realize I am falling, and then I don’t remember…
I see my toe catch. I realize I am falling, and then I don’t remember…

It repeats, like a scene in a bad movie. Over and over, I watch, hoping that I might figure this out. How could I land on my head? Knock myself out? Nothing like this had ever happened to me before. I was a marathon runner. I ski. I hike. I walk all the time…

I finally come up with a theory. The night before my fall, I’d hung my art show. There was something about one of the paintings that bothered me. I’d spent the walk thinking about whether I wanted to fix it.

Distracted! Yes, I fell because I was distracted. It was a bad fall, so I came up with a few other explanations. Sometimes I don’t pick my feet up as completely as I should. The dogs were probably pulling, AND…

After a week and a half, I'm still terrified to go out for a walk, afraid even to venture beyond my driveway. It isn’t being alone with the dogs. I don’t trust my ability to walk at all!

Finally, my son accompanies me to the spot where my neighbor found me, bleeding and confused. I examine the sidewalk and determine that there was something to catch my toe on— for sure! We verbally replay which part of my head hit first and then the ricochet, the chin injury and my amnesia. I feel reassured.

I’ll be just fine from now on. Won’t I? But later the replay begins again, followed by the anxiety and the insecurity…

“PTSD,” my psychologist friend tells me.

“Oh great!” I already have PTSD from my cancer diagnosis and treatment. Now, I’m going to feel like a basket case whenever I walk too?”

I start to explain the mental loop my brain is on. I share with him my logic about how this happened.

My friend holds up his hand to stop me. “It was an accident. You didn’t do anything wrong.”

“No, I fell, because…”

“You had an accident, a chance happening. You need to go back out and walk.”

I’m horrified at the thought.

“Set a goal,” he says. “Walk to the corner. Retrain your brain to believe that you can do it, because you can.”

“That’s it?”

“Yup. It’s just walking. You know how. Retrain your brain.”

“And what am I supposed to do about the loop?”

“Resist it. Don’t allow yourself to obsess. It’ll only make your fear worse, prolong the recovery.”

The next day, shaky and unsure, I set a goal to walk around the block. I begin slowly. I position my feet in a broad base of support, and take each step with exaggerated accuracy. I stop often making sure the dogs are not pulling. I attain my goal.

Now, my brain remembers that I used to be a long-distance runner who often went beyond her comfort zone. That part of me kicks in, and I walk around another block, then another. I’m not feeling secure or safe, but I’m definitely doing my assigned brain retraining exercise.

I keep waiting to feel much better, but I still lack confidence. I’m still anxious.

I put one foot in front of the other and try to override the fear – You can’t do this. Go home, an inner voice warns.

I start back, and then as I have done some many times in the past, I reach somewhere inside and press on instead. One more block. Push yourself. You can go another block. Then, you can go home.

On the next corner I see it. I’ve been looking down a lot making sure I didn’t trip, but it’s not another crack in the sidewalk that catches my attention. I stop. A ten dollar bill. I look around. Noone is in sight. I bend down and pick up my reward.

At home, my son offers to go for another walk with me today.

“I’ve already been.” I tell him my ten-dollar bill story.

He smiles. “The universe provides.”

Yes.

Now, when I walk, I still look for cracks, but I also am alert to positive reinforcement.

Some links to information about concussions:

http://www.cdc.gov/concussion/feel_better.html

http://www.cdc.gov/concussion/signs_symptoms.html

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001802/

 February is National Heart month. It is also the month when we think of romantic love. Is there a connection?

When I was in my twenties, I received a Valentine with an illustration of a heart, not just a heart, the human heart, ventricles, aorta, vena cava and all.

The person who made this unique Valentine for me was a medical student, on whom I had a tremendous crush. I didn’t know back then, that his February 14th greeting had a not only a positive effect on my romantic soul, but also on my physical well-being. Being in love is good for us.

In 2004 book Why We Love: The Nature and Chemistry of Romantic Love, anthropologist Helen Fisher relates that much of romance is hard-wired. Behavioral research tells us that crucial chemicals are released when we fall in love. Two, nor epinephrine and dopamine, create dramatic surges in energy, passion and joy. We suddenly feel invincible, powerful and even feel less pain. 

As I awaited my treatment nearly four years ago, I felt vulnerable and alone. But my subconscious was sending me messages that things weren't what they seemed. That I didn't need to escape, but rather to hold on.

3/29/10

I wished to be free of my troubles, and that night, I had a dream about kites.

Large translucent white kites with beautiful designs floated against a cerulean sky.

I had never seen kites in my dreams, so I looked up the image in my dream interpretation book, and found what I already knew. I wanted to be free of my cancer and to be joyful again. I read further and found that I was subconsciously wishing to let go of the tethers that controlled my life.

But I had awakened feeling hopeful, so I wondered if the tiny strings really did restrain. Or were they there to connect the wishes I’d sent into the heavens with my reality on the ground? Were they offering perhaps not restriction but an opportunity to see my life with a different perspective?