FAMILIAR BUT DIFFERENT
​
            Ten years ago, I was going through my cancer treatment. I was in turmoil, my future uncertain. And the world, that had so involved me, was going on, as if it didn’t notice.
            At the time of my diagnosis, I’d been carrying a backpack full of stressors. Like rocks they suddenly scattered at my feet. At the moment, I had to concentrate on being brave and tolerant and saving my life. If I lived through this, I would later decide what to pick up.
            Sheltering in place has served up a flashback. Except, this time, the outer world is in turmoil. Some people have stopped for a while. Others don’t believe there is any reason to.
Since my cancer was related to the HPV virus, my hope has been that the world might better understand viruses, how capricious and nondiscriminatory they are. That they don’t have morals. They don’t see your value, your humanity. Unseen, they just do what they do to proliferate.
            Since my cancer diagnosis, I have let go of a lot – my job, my boyfriend, my exceptionalism, my victimhood. Navigating the medical system with a cancer that is rare and stigmatized became a full time job. Speaking out empowered me, even as I approached each follow-up scan, exam and lab test with a haunting PTSD. Death always seemed right around the next corner. Statistics that seem to be in my favor mean little. I got a cancer that is two in a hundred thousand. I know I’m an outlier. I never feel totally safe, nor do I take anything for granted.
            Which brings me to our pandemic. And it is ours. The invisibility of a virus is real, and so without question or resentment, I have sheltered. The rocks I have picked up since my cancer treatment, are more like bubbles. But they keep me busy none-the-less. And it is that busyness that I have let go of. Don’t get me wrong. I am still occupied, but the calls now come from inside, from a place in my soul that had been asking for a little more precious time.
            Loss forces change. It encourages us to examine what we’re made of and to define what we value. Sometimes these insights light up as epiphanies. Sometimes they trickle in as small moments while we’re baking bread, hearing a bird’s song or remembering what is feels like to be hugged.
            I once heard a hospice nurse quip that no one on their death bed says, “I wish I had watched more television.” Each of us will emerge from this once-in-a-century adventure having a gleaned a different lesson. Is the message that no one is going to tell me what to do? Is it that, I thought it was serious, but I was on my last nerve and wanted out? Is it that I learned a new skill, zeroed in on a long-forgotten talent? For me it is to again let go of what I don’t have control over, to embrace relationships and conversation, and, yes, once again to contemplate mortality.
            This pandemic is inconvenient and elusive. It can’t be fought with guns or words. It can only be partially mitigated. The devil is in the details. Accept or deny. Shelter or socialize. Distance. How far? How long? Go virtual. Mask, no mask or half-mask? Each day we are defining who and what we love and value. And we wait, not always patiently.
            My cancer diagnosis felt like a ticking clock. How long I will be here? And as I suffered through, I lost perspective. Time became fluid, and I wondered who I even was before this was thrust upon me.
            It’s not unlike a pandemic – scary, painful, boring, demoralizing, frustrating, unfair and unpredictable. You may never feel totally safe. You may never again take your life for granted. My wish is that we will emerge with wisdom, gratitude and hope.
            It won’t always be like this.
 
June 30, 2020

...May 17, 2019 to benefit HPV Cancer Prevention & Research.
Survivors and advocates are changing the narrative about all HPV - cancers. No more shame. Awareness saves lives.
The Anal Cancer Foundation is donor-supported. We survivors feel supported and empowered to get the word out about awareness, prevention and treatment. Coupled with the Farrah Fawcett Foundation the Anal Cancer Foundation supports treatment research.

Six years ago I wrote in a piece published in Coping with Cancer Magazine, From this moment, from the speaking of those words, nothing will ever be the same for me. I could never have predicted how the intricacies of that initial insight would play out.
https://www.copingmag.com/coping-with-cancer/on-the-other-side-of-the-diagnosis
In the eleven years since my initial diagnosis and the eight years since my recurrence and finishing chemo and radiation, my sense of having things to do has opened up more possibilities than I could ever have imagined.
It's as if all the pieces of me have come together. As I juggle them, I feel blessed to be alive and to be contributing.

 
I love visuals. A picture can cut through all the words and deliver a message straight through to our consciousness. An image can clarify, warn or encourage. It can stick in your head and maybe even change how you look at yourself and your goals.

January’s resolutions are perhaps a distant memory. Maybe you’ve hit your target and lost a hundred pounds or run your first marathon. Amazing! Or you’ve achieved your modest goal of shedding a pound or two a week or walking in your neighborhood for twenty minutes.

Or maybe not. There’s a good chance that whatever you’ve not done or whatever has taken longer than you planned will cause you to feel discouraged. You step on the scale and wonder, if you were meant to keep your resolutions, then why stick Valentine’s Day in there before you’ve even had a chance to hit your stride.

As spring approaches, guilt may have to set in. Most of us begin the resolution process with resolve. This dedication gets tested many times before tax day. We go to the Farmers’ Market to stock up on fresh fruits and vegetables and end up with a bag of Kettle-corn. It has roughage. Right? We go to the gym for three days, and then work gets busy. Overtime and we are too exhausted to even considering a workout. Isn’t sleep important too? There’s never enough of that.

This winter you’ve had the flu, or your kids have. You had a party or two you had to attend. After all you have social obligations. Of course there was food there and you stayed too late and missed another workout. Or you were on a roll, and then your shoulder started hurting, so you couldn’t swim. Or you had that long-avoided foot surgery. Well, at least while you convalesced you spent a few minutes a day practicing your relaxation breathing, meditation and mindfulness.

You didn’t? Instead you spent hours on Facebook and Twitter? Just yesterday, when you’d been good for two whole days, you walked by a doughnut shop and an apple fritter called out to you.

The time that has passed since January has included many lost hours, days and weeks. Is this month a loss too? Is it hopeless? Should you wait until next year and write some really extraordinary 2019 resolutions?

No, I’m suggesting you switch your focus and go for a long-term approach. Resolutions are helpful, but this health thing is a life-long journey measured by choices you make every day.
So ditch the all-or-nothing approach and take the all-and-more attitude. Most of the time, eat your fruits and vegetable and exercise. Sloth is one of the seven deadly ones, but endorphin addiction can make you a gym junky with no time for higher goals.
Balance. Play. Spend time with friends or with creative endeavors. 

Sleep enough. Don’t delude yourself into thinking your productivity is more important than rest. 

Finally, consider that apple fritter, or whatever it is that makes you forget your inner compass. Our bodies are wired to resist deprivation. Don’t deny yourself all the time. But don’t indulge yourself all the time either.

A wise friend said to me, “It’s never too late to have a good day.” Translated, it’s never too late to get back to your good habits.
Another one advised. “Everything in moderation.”
That has a certain visual appeal.
 
           

          I just wanted to be home, in my bed, but that was more than an hour’s drive. It was 8:30 at night, my location a tasteful bathroom at a world-class performing arts center in Beverly Hills. At this point in the evening, I thought I might be looking down into a margarita at this elegant fundraiser. Instead I was staring into a toilet bowl, retching.
         “Are you all right?” a concerned voice asked.
       Anyone in my position likely would be in this condition because they’d had too many shots of tequila.
       “I’m sick,” I answered and apologized that anyone should have to hear the repulsive sounds I’m making. I explained that I’d come to volunteer at the event and gotten sick. “I’m embarrassed,” I add.
            “Don’t be. It could happen to anyone. I just wondered if you were okay.”
          The person didn’t ask if there is anything she can do. I don’t know what I would have said anyway. “Oh yes, can you drive me back to Ventura. I need to go to bed.”
          I just said, “Thank you,” and went back to staring into the toilet and flushing the disgusting contents of what felt like my entire G.I. tract.
         I’d been looking forward to this event for months – the second Tex-Mex Fundraiser. I wasn’t a volunteer just tonight but had made myself available anytime The Foundation or Stand Up 2 Cancer needed me to play my role as survivor/advocate for anal cancer. I showed up because of my work and my status as someone who lived through what Farrah didn’t.
        Even though I’d survived cancer, sick isn’t something I’ve ever totally accepted. I generally push myself to appear normal, when I feel anything but. Pelvic radiation has left me cancer free but with a plethora of malfunctioning organs– bladder, female, bowel. I often think of Farrah who died before she had to experience this. Even now, as wretched as I felt, I knew she’d have traded places with me.
         If she had been in my condition, someone would have taken her home, cared for her, apologized for her, missed her. I felt none of that, just a sense as I heard the mariachis, the clinking glasses, the laughter that I’ve made a terrible mistake being here. I'm sure everyone thought I'd already gone home.
         I’d arrived at 3:30, a half-hour earlier than expected. I’d felt slightly ill the night before and that morning, but I’d given into sleep, hoping that this too would pass. The nausea, that comes on sometimes for reasons I don't understand, was annoying but not incapacitating. Right before I left the house, I threw up, but then I felt better.
      You can do it, I assured myself.
     I did feel better for about an hour and a half, while I sat folding the events’ multicolored cloth napkins. This was a job that required little physical movement, so masked a bit of what was to come.
     I marveled that my advocacy, educator self was just where she needed to be, as I listened to a conversation about private schools and heard about kids who were precisely the age of those who should be getting the preventative HPV vaccine. Outside from a video that I knew well, I heard the familiar voices of Dr. Haddad and Dr. Reinherz talking about HPV and the therapeutic vaccine for which Farrah’s Foundation had helped fund the research.
       One of the napkin folders, a well-dressed woman slightly younger than me looked my way. I had explained earlier who I was, so she asked, “HPV. I didn’t know that was the type of cancer that…” She hesitated, changing direction. “What exactly does the Farrah Fawcett Foundation do?”
            So I explained the Dana-Farber connection and a little more about my diagnosis, treatment and the counseling I offer to the frightened, devastated women who contact me through the Foundation. I told her about the relationship between HPV and anal cancer. Next to me, a younger woman, who had been talking about what sounded like her pre-teen or teenage children, heard the words “vaccine” and “HPV.”
      She reminded me that all would be well with the younger generation if they "just use condoms".
       I explained what we know about the transmission and that condoms aren't sufficient, that only the vaccine would prevent HPV infections. "The vaccine prevents cancer."
         I addressed the issue of how the virus was transmitted. That celibacy until marriage seemed like a good idea for other STDs. I suspected that was what she was expecting of her children. I broke down the thought process. If both people were virgins and had never experimented in the past and never would in the future…
       “There’s always the reality of cheating, divorce, rape.” And just for the sake of her children’s health, I added. “Of course, some people don’t know, but oral sex is one of the ways it’s transmitted.”
          In fact, oral and anal sex are two of the behaviors that some kids think are safe - behaviors they are unlikely to run by their parents.
         The napkins were folded and off the two women went. I wondered if they would question their assumptions or block out the unpleasant woman they’d just spent an hour with.
            I never got to find out or see them again, or anyone for that matter. The sickness (the result of my radiation) was abrupt and, over the hours, draining. I rested on a couch in a nicely appointed room that the house manager found for me. I waited for improvement, but, when none came, finally made my way to my car. As I walked passed the twinkling party lights, I chalked up one more thing that this cancer had taken from me. I slipped out unnoticed.
     When I finally made it to the parking lot, dehydrated and weakened, I guessed that the garage attendants saw me as just another drunk party-goer,
     I struggled to pay my fee. Again and again the machine spit out my credit card with about the gentility that my stomach contents have been ejected ten or so times in the last four hours. Finally, I pressed the “phone” button to ask for help.
      A disembodied voice told me that there were people to help me “in the booth.”
      Booth? I desperately looked around and saw none. I stuck my Master Card in again, daring the machine to reject me. Couldn’t the woman hear how sick I was? I called again, hoping some human would come to help me. No.
         “I don’t see it,” I pleaded. Finally, with some vague directions from the voice, I found the helpers. The guy used another machine, which worked. At that point I realized the diminished state of my problem-solving skills.
          My GPS guided me out of the town of beautiful people, and in less than an hour and a half, I staggered into my house.
         My son and his wife had spent the evening there barbecuing and watching my dogs. Our plan had been that my son would have a fire going in our outdoor pit, and we would have a relaxing glass of wine together while I regaled them with stories of celebrities I’d met and ordinary people whose lives I’d influenced. I imagined at some point, someone – maybe the SU2C board or Alana, Farrah’s doctor or even Ryan O’Neal and I would have an interesting conversation or two about what it was really like to survive Farrah’s cancer, and why this fundraiser was so important. I’d hoped for a few photos to put on my website too.
         Instead, I headed straight for the most elegant place in my world – my bed – fortified with guidance from my son, advice I should have given myself. “If you feel sick, Mom, stay home.”
          When I could get myself to look at the photos of the event, what I’d missed made me even more disappointed. But as the days went on and I regained my health and strength, I was thankful that I’d been guided home safely.
            I think even more now about Farrah and what she would have thought and felt. She would have understood. Perhaps, she would have been like the woman in the stall next to me who asked me if I was okay.
            For that matter, maybe she was.
 

It’s the same worldwide. When the doctor prescribes a couple of pills and weight loss, the seriousness of a permanently elevated blood sugar doesn’t register. Diabetes only seems serious when Insulin or the threat of it is brought into the conversation. Then terror strikes. The threat of complications loom large when the diagnosis is new, but over time take a back seat to the occasional doughnut or the daily round of sugary sodas.

It’s understandable. The silent, often invisible nature or the disease encourages misunderstandings.

As a diabetes educator, I walk a fine line between encouragement and concern. I never intentionally scare anyone. My worries and dooms day scenarios are my own.  I’m only too aware that I can’t predict with certainty who’ll have which misfortune when or who’ll be spared life-altering complications. Besides fear is a short-term motivator. It’s disrespectful to nag and hound and counterproductive to out and out petrify. Even a skillfully worded message is will elicit a glazed look if I don’t know when to stop.
           
To avoid this I’m-checking-out look I have developed some skill at reading body language. I can tell a lot when talking directly to someone and from observing. I recently had the opportunity to do just that. I was one of two grandmothers who’d traveled many miles to celebrate a first birthday.
           
My cohort and I had discussed diabetes before. The first time was in Bahia, almost three years ago, when my son and her daughter were about to marry. I don’t speak Portuguese, and she doesn’t speak English, so who knows how we ever got on the topic? Vaguely, I remembered discussing carbohydrates, while inches away bowls of mangoes, papayas and bananas beckoned.
           
What could possibly be wrong with plenty of fresh fruit?
           
But it wasn’t just the consumption of fresh fruit that had tickled my tongue with uninvited advice. I’d swallowed the wad of warnings. After all, she’s the other grandmother, not a client.
           
This visit was different. Vovo was recently put on twice-a-day combination long acting and intermediate acting insulin.  For the first time I thought some of my expertise was being solicited.  An air of doom and gloom had descended. I’m the cancer survivor, but my son and daughter-in-law were genuinely thinking that the clock was ticking for the younger of us. The death knell had sounded.
           
“We need to talk to you,” they said seriously.
           
Of course, I saw the addition of this wonder drug differently. To me, it seemed like good news. In fact when I saw her this time, she’d never looked better. To my trained eye, I would have guessed she had been shed fifteen to twenty pounds. I complimented her on her weight loss.
           
At that point my son and daughter-in-law, Vivian, asked me to talk to her mother.

Vivian interpreted as I went through some basic questions – What was she on and what was her dose? How long she’d been on it? What were her self-reported blood sugars? How is her A1C? Any insulin reactions, dizzy spells? I did a quick overview of how she’d changed her diet, what she’d already done.

The conversation went as it might have if she were my patient, new to insulin. I made sure she was safe, for the time being.  I explained the onset, duration and peaks of her insulin and gave a bit of advice about eating and nighttime snacks. I asked her about her next doctor’s appointment, since follow-up is critical. About ten minutes into this, Vovo’s expression became blank.

“I’ll be here a while. We can finish this some other time. Just tell her that I think it’s a good thing you are on insulin. Your blood sugars will be better controlled.”

My daughter-in-law seemed to relax, and Vovo smiled before she picked up her phone and began checking her Facebook messages.            
“I could see when she’d heard enough,” my son said. His observation was keen. He’s teaching now, and he knows that overload look.
           
I had her attention for long enough. During the week we talked again without the human interpreter. My phone has a convenient app. During this exchange we practiced reading labels and discussed carbohydrates again. I suggested she ask her doctor about increasing her dose. I could tell from watching her food choices that week that she was doing well with her diet. Our chat this time engaged her longer, maybe fifteen minutes.

The most important part of the of out exchange came at the end.
I typed a question into my phone for translation Como voce se sentiu desde que voce esteve na insulina? How have you felt since you’ve been on insulin?

She stood tall and smiled, “Estou menos cansado. Eu tenho mais energia.”

I didn’t need my translator, nor did she. “Insulin is your friend,” I said

For the past eight years, AACR has been the proud scientific partner to Stand Up To Cancer (SU2C), the groundbreaking initiative that galvanizes the power of Hollywood to fund cutting-edge translational cancer research. Last month, SU2C-affiliated scientists came together in Santa Monica, California, for the sixth annual SU2C Scientific Summit to report on and hear about recent progress made by the multi-institutional translational and clinical research “Dream Teams” that are the core of SU2C’s grant program, as well other members of the SU2C scientific community. As part of its expert scientific oversight and grants administration for SU2C, AACR organized and ran the two and a half day meeting. Attendees, including most of the SU2C Scientific Advisory Committee members, discussed the newest research and latest clinical trials in areas such as immunotherapy, precision medicine, and early detection and prevention in a focused, sometimes intense, and highly interactive atmosphere.

I was honored to attend as the Patient Advocate with the HPV team from Dana Farber Cancer Institute. We are living in a time of great hope because of the SU2C and its partnership with AACR.

           Have you ever wondered what people in cancer support groups talk about? Everything.
            In an Op-Ed piece in LA Times, Nora Zamichow wrote about her husband’s death at fifty-eight from a brain tumor. She made the interesting observation that doctors have a lot of trouble saying the word dying. She writes, “In a recent study of doctors whose patients were dying, only 11% said that they personally spoke with their patients about the possibility of death.”
            On one hand Zamichow asks why she didn’t know her husband was dying, on the other she speaks of “an obstinate desire to cling to every shred of hope in spite of evidence to the contrary.” Could it be that doctors have the same desire?
            She says we have a medical system that “treats death as a separate event having nothing to do with life.” All those observations are true. But how many non-medical people actually use the “D” word, as Zamichow refers to it? Yet don’t most people have our own pet phrases – went to a better place, passed on or simply passed? The author takes doctors to task for their euphemisms and avoidance. She questions whether it’s lack of training or an admittance of defeat that keeps the word perched on their tongues, never to be uttered.
            The closest her husband’s doctors got to it was to recommend the H-word, hospice – a stand-in for, “hopeless?” Hopelessness and their own helplessness is what some doctors have trouble dealing with. They know when hope of cure gone. They know when we’re not going into remission when we will never return to our lives as they were. They know that death comes even if they can’t predict exactly when. It comes even when our doctor is aware that we’re not ready.
            Everything. Today, our women’s cancer support group talked about death. Again, one of our members is dying. She has been the support goddess for all of us. Before the recurrence of her long-gone cancer, she noted, “I really don’t want to be part of this club.”
            Now, she is getting palliative care. Did her doctor say the word, or did he and others withdraw, and leave silent the answer to her question, “What else can you do?”
            In a roomful of women who have heard the C-word and talked openly about the D-word there is sadness but not gloom. We engage in anticipatory mourning for our friend and even ourselves. We don’t brag about our survival skills, we brag about our latest test that “didn’t show anything.” Anything meaning cancer. We wait for the next marker, which will tell us where we are and maybe even who we are. We’re not unusually brave, but we aren’t afraid of the D word. Could our doctors understand that?
            Recently, I experienced a milestone. My radiation-oncologist discharged me. I considered him my main guy. Now, he only wants to see me once a year. When I told my group my news they all congratulated me and then asked how I felt. They already knew. Scared.
            The group facilitator asked me to say more. What did this milestone mean to me besides insecurity?
            “It means I have moved to a new phase, that I have to give myself permission to think of myself as…” I hesitated. The word that came next sounded arrogant, “well.”
            There, I’d said it, the W-word. When did that become so foreign? When did the one-foot-on-the-banana-peel self-image take over? When did I stop identifying myself as well?
            “Chemo ages you,” my young oncologist said a while back when I complained of this annoying post-treatment fatigue.  Some days I feel 102 inside, but no one would guess unless I shared with them what my everyday challenges are.
            My radiation oncologist knows. He wasn’t sending me off unattended. He was passing the baton to the four specialists who are caring for the downside of what he did for or to me.
            My right of passage inspired a fascinating discussion about aging and how cancer treatment affects our experience. We all admitted that we didn’t know anymore what aging felt like. That we would never would experience normal aging.
          Each woman in this support group knows what it’s like to leave her old self behind. As we talk, I begin a familiar inner dialogue of who I used to be. Then I stop myself. My memory of my old self becomes more vague as time passes. I talk about her less and less. I have mourned her passing. I have come to believe this post-cancer body is just as dramatically different as the body that morphed from childhood to puberty. I become acquainted with her every day, and every day she is more me. I say that, and everyone nods agreement.
            We talk about embracing the next stage of our lives. It doesn’t resemble normal aging. It isn’t healthy and well. None of us even know what to call it. Perhaps it’s what happens before death.
             It’s life.
 
 
 
 
 
 

For fifteen years I was a jogger, slow but avid. After the first, always-painful mile, the movement of one foot in front of the other became meditative. Most mornings, often before the sun rose over the Oakland Hills, I ventured out with my trusty, overweight Labrador in tow. En route I encountered two or three regulars, other obsessive-compulsives addicted to endorphins. For eleven months I tread the long and lonely road.
            Then every January, I’d get the distinct impression Juniper and I were in the middle of the training grounds for the Olympics. Men and women in fashionable outfits and the latest athletic shoes would smugly whiz past. Where did all these runners come from?
            When my back gave out, and those around me couldn’t stand my crabbiness anymore, I took up an alternative exercise, swimming. The pool is not as lonely as the road, but most mornings I encounter the same few, people. Many of them acknowledge they aren’t loving being there. They’d rather be in bed, but they admit, they have a habit. Occasionally I have to share a lap lane, but usually it’s with a regular.
            Then every January, new Speedos, goggles, flippers and paddles attach themselves to unfamiliar bodies and invade my liquid space. Sometimes I even have to sit on the side of the pool waiting for my lane! Where do all these swimmers come from?
            These exercise enthusiasts have traveled from the distant realm of Resolution-Land. They are beginning their New Year armed with the magical weapon of good intention. Creo en milagros! Even though my thoughts say “good for you,” I try not to get too attached to these lovely incarnations, because by the end of the month most will have moved on to another activity or interest. I still applaud each individual effort, because I know one or two will make it into February or even March. Some will actually become regulars.
            If you have ever engaged in writing New Year’s resolutions and even been so bold as to save them from year to year, you might have noticed that the same maddening, but differently worded, self-reform mandates will appear several years in a row. It’s okay. Be proud of your effort. To work toward bettering your life is the best exercise! My own list of needed improvements could have its own aisle at Home Depot.
 
Here are some resolution guidelines that might help you succeed:

• Keep your list short.
• Be careful about what you resolve. Winning the lottery is out of consideration; buying a ticket isn’t. Resolutions should be things over which you have control.
• Be realistic. Losing 100 pounds in two months probably won’t be a good one either, but you can resolve to eat one extra portion of vegetables a day, or to switch to whole grains most of the time.
• Behavioral change is a journey. Anyone who has ever completed a marathon has started the process with those first excruciating, breath-defying 5,280 feet.
• Write it down, and put your resolutions in a place where you can refer to them frequently.
• You don’t have to share your intentions with anyone.
• Resolve to add things to better your life. Giving up stuff is for another season.

            During a period of personal stagnation, I resolved to have a new experience every week. One time the only thing I could come up with was to eat a slimy, sea urchin sushi. But a promise is a promise, even if it’s to yourself.

• Build your resolutions around what you value.

            Recently, the capable woman who cuts my hair asked me, “Why do I do everything for everyone else first, and then don’t have the energy to take care of myself?”
            In order to continue to be able to take care of others, you first need to nurture yourself without guilt.

• Resolve to do just that!

Happy 2016.