When Good News Requires a Translator

I’m writing my latest Caring Bridge update on my personal website, ControlFreakPublicRelations, because Caring Bridge doesn’t handle full-size photos and YOU HAVE GOT TO SEE THIS. So if you clicked on a link to get here, thanks. I am trying to show you my written PET scan report, not steal your credit card numbers or hack into your Ashley Madison account.
Isn’t technology great? I can sit in bed and use a hand-held computer and share the results of my Sloan Kettering medical test with people who live anywhere in the world.
So, take a glance. Seriously, don’t try and read it. This is just the last page, anyway.

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Huh? Thoracic inlet? Adnexal cyst?
Here’s all you need to know, and here’s why I didn’t include the entire report, which would just make you squint and make a lemon-face, with all that jargon.
Stable. Stable. Stable. Stable.
Yes!!! Praise God.
“Stable” means my cancer isn’t growing. In some places in my bones, the lesions are actually smaller.
The reason this news is especially awesome is because it was so unexpected.
I started a new cancer treatment several months ago, called Afinitor. It doesn’t help every patient. My doctor believed it could help me. I was unable to tolerate the usual 20 mg dose, or a half-dose, or even 7.5 mg. At the time of the scan, I was taking 2.5 mg every other day, the only level I could take without constant stomach pains, skin rash or depression. And the results are great!
I’m feeling so relieved and joyful right now.
My next hurdle is getting my pain under control. I’m experiencing some withdrawal symptoms, and pain during activities. But none of this lessens the joy I feel, particularly in sharing this news with you. Thank you for caring about me.

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A Marathon Tale: An Unlikely Duo

Desert Grit

Heading home to Buffalo, NY for the marathon over Memorial Day is an annual delight. The weather is always perfect, the trees are green, and the city has a winter-is-finally-over-buzz that instantly doses me a contact high. It also arrives at an opportune time for relief when the heat is ramping up in Tucson to the triple digits. “It’s not bad, it’s a dry heat,” they tell me. Yeah, well so is an oven.

It’s a quick trip. I arrive at my folk’s house at midnight on Saturday. I’m up at 5:30am the following morning sipping coffee and going over my strategy for the marathon that begins at 7. The last marathon I ran was Boston a couple years ago. I ran a PR (personal record) in 2:47. An hour or so after I finished, the thrill of my fastest marathon to date became trivial and insignificant as the horrific…

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3 Years Living With Stage IV Cancer

People often ask me about how I discovered my breast cancer had returned. When breast cancer first presents itself, it’s often a lump felt by the patient. Sometimes it’s a total surprise, and only a mammogram or other medical test detects the cancer.

I know some people ask because they are curious. Some are frightened of discovering their own cancer or their own recurrence, which means the cancer comes back in the breast, or metastasis, when it spreads outside the breast.
Today, Dec. 19, is the day my doctor called me to tell me that my cancer was back after 3-1/2 years as a Stage I cancer survivor. Some folks call it a “cancerversary.”

The terrible tasting liquid I drink every 3 months as part of my PET scan. The test shows cancer activity in my body,

The terrible tasting liquid I drink every 3 months as part of my PET scan. The test shows cancer activity in my body,

Perhaps it’s more accurate to say that the cancer had been there the whole time, but had not been detectable until that time. It’s a controversial subject, whether women whose breast cancer metastasizes have had it in their body the whole time, or did it “escape” from the breast before, during or after treatment? I won’t say anything else about that issue here, except it can cause a lot of heartache and guilt for the cancer patient, wondering what they did wrong.
I had been in pain for several months when I had the CT scan that found the breast cancer had spread to my lungs. I had gained 20 pounds despite daily stair-climbing (15-30 stories). I was getting weaker and weaker and had to break up my mid-day climbs into 3 sets of 10, morning, noon and night. I don’t know how I exercised. I self-medicated with 4-5 Advil every 4 hours and huge amounts of wine to get through every day. I would wake up at night with terrible pain in my chest, unable to get my breath, even worse than when exercising.
I couldn’t do anything about the pain until Jeff and I married in November
and I could be on his health insurance. I had already looked up pre-existing conditions — I had been treated for breast cancer more than 3 years ago, so I was OK there.
It was a slow process of diagnosis. I had X-Rays, sonograms and mammograms, and NOTHING showed up. Which was very frustrating, to be in such horrible pain, with nothing to show for it. I was so happy when my mammogram was clear. Then terrified when I realized that just because my breasts were clear didn’t mean I didn’t have cancer somewhere else. I had experienced mild bouts of asthma, so doctors told me it was just asthma.
My family doctor, Emily Taylor, was my ally. She had done an internship on the breast cancer floor of Sloan-Kettering Cancer Center. I had tried to call Sloan-Kettering in October and get an appointment, but the nurse told me I needed a diagnosis to be seen.

Meanwhile, the rest of my newlywed life in New York City was a disaster. The face Jeff and I tried to present to our friends and family was of stability and strength, but despair followed us around like a new puppy. I won’t even begin to describe our lives, because it was so unbelievably sad. We kept hoping that one day the bad news would stop, but it didn’t.
Just one example: In the summer of 2011, we learned that the “corporate apartment” that we had been living in didn’t belong to Jeff’s boss at all. It belonged to a man who wanted to move back in, right away. We didn’t have the 3 months rent required by most New York landlords (first, last, and security deposit). I found a 3-month sublet on Wall Street, with only one month’s deposit required, and we hoped by the end of the lease, we would have enough money saved to sign a 1-year lease on the apartment. Only the owner decided he wanted to sell, not lease, so we had to move twice in 3 months. I managed to find ANOTHER short-term lease. But the apartment was furnished, so we had to pay to store our belongings.
My CT scan was on a Friday afternoon. Afterward I drank enough alcohol and swallowed enough Advil to go to Jeff’s company Christmas party that evening and seem jovial. But I was worried.
The next morning, we took the train to N.C. for the Christmas holidays. I was working about 30 hours a week online as an English-language assessor for non-native speakers. I had scheduled myself a week of work at home, starting on Monday. I look back now and wonder how I managed to work at all with the amount of pain I had. I am proud of my strong work ethic. I worked the day my father died, the day my mother-in-law died, and even the day I found out my cancer had returned. (If I may further boast of what God has helped me do, I moved into a new house, 9 months pregnant, from 8 am until 11 pm with only 2 meal breaks. My water broke at 2:45 am and I delivered a son at 6:30 a.m.)
In North Carolina at my in-law’s house, I worked on the morning of Dec. 19. My husband came upstairs a little bit before lunch to tell me that my family doctor had called his phone. My phone had been stolen out of my pocket on the way back from the hospital after the test on Friday. I had emailed my doctor this news, along with my husband’s phone number.
On my lunch break, I called Dr. Emily Taylor. I know doctors must dread these calls, so I tried to sound upbeat in my responses to her. She told me I had lesions in my lungs and pleura. The breast cancer was back. Later tests would show the cancer in my ribs and spine. The cancer was not in my liver, which was good. And it was nowhere in either breast. To this day, I am a huge opponent of double mastectomies for tiny Stage 0 or Stage 1 cancers. I respect a woman’s right to choose, but I believe too often, decisions are made out of fear and ignorance. I see many women who are sad and angry after going through multiple surgeries and chemo, and yet the cancer returns. I know there are some types of breast cancer where the patient does not have a choice, she must have her entire breast removed. It is not my intention to criticize, only to beg people to educate themselves.
So, back to the news. It was horrible news because we didn’t know how long I had to live. We were hoping the cancer was slow-growing, as my original breast cancer was. The doctor wanted me to go immediately to a local lab and have some blood work done. And we started that day setting up appointments for biopsies, oncology visits, and on and on. It sounds so bleak to write it now, but it was not a sad time. That Monday, I had a special lunch planned with both my sisters and my mother. My sisters were sitting downstairs in the living room as I spoke to the doctor about my cancer. What a comfort it was to have my sisters, husband and mother-in-law there to hug and console me. As tragic as it was to lose my phone and the photos, had it not been stolen, I would have heard the news about my cancer in New York, possibly before the work party. Or before a 13-hour train ride.
As it happened, I heard the news surrounded by the people who loved me most.
The journey was just beginning. Shock cushioned the blow. A local doctor who had previously treated me was able to give me some strong pain medicine, but just barely enough to get me back to New York. And my son was coming back with me to New York to spend New Year’s Eve. He had lived with me in New York for awhile, but was now living with his father in Winston-Salem, which was heart-breaking to me, yet I knew it was best for him. How was I going to spend time with my son when I was in so much pain and distress?
God found a way for it to all to work out.
When I tell my recurrence story to friends or strangers, I am often laughing as I talk. It’s not nervous laughter. It’s joyful laughter. God found a way to bring exceptional riches to my life through Stage IV breast cancer. Managing my pain has been the most difficult task. Despite the pain and sorrow of cancer, I feel blessed beyond measure.
In the year that followed my diagnosis, my sister-in-law, then my sister, came to stay with us in NYC for a few weeks at a time, to take care of me. We became even closer and I learned so much from them about how to be a better cancer patient. My sister-in-law, Stephanie, cooked for my husband and me, helped me organize my medicine, helped improve my diet. My sister, who is a nurse, helped me to be a more demanding patient, to not be satisfied with half-answers. Her meals were delicious too. Both ladies slept on the same lumber-hard fold-out sofa, never complaining.
My husband has continued to be the most wonderful, constant husband, provider and comforter in my life.
He had been drinking too much when I was diagnosed. It scared me, I told him I couldn’t take care of myself if I was worrying about him. He immediately stopped drinking, then stopped smoking. He began running and competing in races, 5k at first, to marathons and half-marathons. He ran his first NYC marathon in 2013 and deferred this year’s entry until 2015. He amazes me every day, and is now in triathlon training.
I have had many wonderful experiences since being diagnosed with stage IV breast cancer. I celebrated my first birthday after the stage IV diagnosis in Jamaica with my husband, my ex-husband, his spouse and our children. (How’s that for togetherness?) I’ve also travelled to California wine country; Disney World and Universal Studios; Savannah; N.C.’s Outer Banks, St. Petersburg, Florida and other memorable places. Every three months, I travel to New York City for tests and doctor consults at Sloan-Kettering Hospital. I still have more good days than bad days. I know it won’t always be that way.

I’m preparing myself for tomorrow and the next life, at the same time, as much as I can.

Me and my sister-in-law Stephanie right before my lung biopsy. When the doctor introduced himself to me, he said, "This isn't the most difficult biopsy I've ever done, but it's close."

Me and my sister-in-law Stephanie right before my lung biopsy. When the doctor introduced himself to me, he said, “This isn’t the most difficult biopsy I’ve ever done, but it’s close.”

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Today, a New Business Is Born

When I was diagnosed with Stage IV breast cancer, one of the saddest things for me was saying goodbye to work. At the time of my diagnosis, I was working about 20-30 hours a week as an online editor and other tasks related to the English language. Slowly, that dropped down to 10 hours, and then none. It hurt. The medicine affected my memory and the pain affected my concentration. It’s been almost 3 years, and while my cancer isn’t any better, I have been able to get my pain under control, and for the moment, my condition is stable, meaning, there’s a lot of cancer in my body, but it’s not growing very fast.

I’ve felt led for months to do something to help others, breast cancer patients in particular. I am not ashamed to say that on sleepless nights, I would pray a lot, asking God to point out where he wanted me to go. I have found that it’s a very effective prayer for me, to remind God that I need more than a little nudging. I would go to church and sob, not with confusion, but with utter happiness to be a child of God. “Here I am, Lord,” my heart would say. “Send me.”

Like most opportunities that come my way, it started with me saying no several times. My mom invited me to a Mary Kay makeup party. I didn’t want to go. I went, and immediately connected with Amber Smith, the Mary Kay consultant. I found out that Amber’s mom died from breast cancer. Amber invited me to join her team as a Mary Kay consultant. I told her I didn’t want to sell.

One night soon after, Amber was working at an event downtown, and I walked over to say hello. I later ran into a fellow board member from Sister Cities Winston-Salem. I resigned from the board when I moved to Texas, but the chairman had been asking me for months to rejoin. Suddenly at that moment, I felt like God was giving me the OK to try some things. I told the board member that I would be back on the board soon. Soon after, I found myself considering the possibility of selling Mary Kay.  What was fueling my desire was the belief that I could use Mary Kay to make women with cancer feel pretty, to feel like their old selves again, as I did that evening in downtown. But I wasn’t ready to commit yet. I ordered a starter kit, and began dreaming big and praying hard.

Last week, my Mary Kay starter kit arrived. It was very exciting. The box was adorable, with motivational statement inside and out. I began discussing the idea with my husband and he helped me tremendously with my mission statement and general advice on running a business.
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I haven’t even begun to explain the financial miracle that allowed this business to begin. I’ll share that later.

In the first photo, you can see me with my own set of Mary Kay potions. I’m not giving anything to cancer patients I haven’t tried myself. My cancer treatment had made my skin crazy-sensitive. Some nights, I slather on Benadryl cream 2014-09-15 001 2014-09-15 008 2014-09-15 001 2014-09-15 009like some women do with night cream, before bed.

Today, I announced my business on Facebook. It’s actually 2 businesses. The one I announced today is Look Closer, the project that will deliver gift bags of Mary Kay products to women with breast cancer. I want to do much more with this organization, but for now, I’m starting with gift bags. The other part of my business is simply selling Mary Kay. I will be accepting donations to help pay for inventory for the gift bags, but I will also be in business for myself, and I hope to make enough money to contribute regularly to the inventory of Look Closer. I am ready for my life to change and to change lives. Here I am, Lord. Send me.

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Don’t Box Me In

A couple of weeks ago, I ordered makeup online from a division of Nordstrom. Nordstrom is my favorite department store, but one I am unable to visit often, because the closest one is an hour and a half away. To be exact, I ordered four Laura Geller i-care waterproof eyeliners in navy. Regular price is $20. I had paid that on Amazon a few months ago. The Nordstrom price was two for $12. Yeah, I jumped on that!
The shipping charge was $7.95. I added a couple of pairs of panties to the order, because that’s what I do when good stuff’s on sale, I buy MORE panties stuff. With $7.95 in shipping charges, I wanted to get my money’s worth. I think I made out OK. I’m not so sure about Nordstrom.
About a week later, a box arrived. 016ca00539d6ceda638f31460ac17eaa0c02136539
It wasn’t my order, in total. It was part of my order. One panty.



 

 

 

 

 

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There was plenty of room in the box for the other things, don’t you think?

 

 

 

 

 

 

A few days later, another box arrived.

With … one panty.

Poor, lonely panty.

 

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Today, the last part of my order came dragging in.
Each set of two eyeliners was packaged in a separate cardboard box. Each box was wrapped in a padded envelope, because we know how fragile pencils in cardboard boxes inside other cardboard boxes can be.
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All of the items that cost $7.95 to ship will fit on a small envelope. I didn’t unbox the other two pencils. Use your imagination. (The pencils! Not the panties.)
 

 

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Take a look at the amount of cardboard it took to deliver those smaller-than-an-envelope-items.
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I do not dislike cardboard. My sister works for a cardboard manufacturing company. I encourage responsible cardboard use, for her prosperity.
Once or twice, I have had to make multiple trips to the post office with a package I am mailing because I miscalculated. I didn’t weigh the items carefully, or the box that held a $10 item was too tall and would cost $27 to mail. All the while, I would scrunch up my brows, suffering because of all the precious resources I was wasting: gas, or shoe leather; time; packing tape; labels; boxes. I learned how to carefully prepare my package to protect my money and restore brow smoothness.
Have you had a package-mailing make your brows scrunchy? It only takes a couple of times and a few cuss words and you will learn to measure twice, cut once, and all those other important rules of economy. What I want to know, is, when is someone from Nordstrom going to learn about shipping?

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Maternity Words

I’ve got a beach vacation coming up, my weekend birthday plans are set, and I’m going to hear some great Winston-Salem music tomorrow night …. and yet, I have a bittersweet, long-ago memory in my heart that is playing in an endless loop.

When I was a publications editor at the Winston-Salem Journal, I was in charge of the annual Mother’s Day contest for elementary school students. Guess who got to read all 800+ essays. One year, the grand prize was a gift certificate to a toy store for the child, and a restaurant gift certificate for the mother, so that the family could celebrate Mother’s Day with a fancy dinner on the town. When I called the teacher of the winner, it was clear she was proud of her student, but she called me back later, and sounded panicked. “This child is very low income, and I don’t know if a gift certificate to that restaurant will mean a lot to the family,” she said. “They are struggling to buy groceries. Could you offer the mother a cash prize instead?”

I wasn’t sure I could help. When restaurants sponsor contests like this, they often do what is known as a “trade-out” — they trade a gift certificate for advertising space in the newspaper. I knew that getting cash out of that deal to give to the winner wasn’t going to be easy, but somehow, the advertising director pulled some strings. A lot of the details have faded from my memory, but I can clearly remember calling the mother, and telling her how special and talented her boy was. As I read the essay to her over the phone, I could tell she had tears in her eyes, too.

Mother’s Day is here again, a hyper-commercialized holiday for women who carry us inside of their bodies for 9 months. When it comes to expressing my emotions on this occasion, I so often stumble with my words and my actions, and the fact that I have more than 15 years of experience as a mother doesn’t seem to help at all. Not only that, I’m a writer — I’ve been a writer my whole life. I have written thousands of essays, short stories, poems, and letters. I have decades of experience editing and improving what others have written. I have worked for several years at educational testing companies, reading and scoring thousands of essays written by children of all ages. Despite all that, I fail at writing one original line inside a preprinted Mother’s Day card. It’s not easy, no matter how much I wish it could be. I think that’s why today, as I sealed that card and wrote “Mom” on the yellow envelope, I thought of that sweet school boy, the caring teacher, and the prize-winning essay that flowed as effortlessly as maternal love.

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Soft Eloquence Vs. Fierce Persuasiveness

A friend shared this poem by Robert Frost as I was launching my public relations business. I’ve memorized it, because I think it’s important to store beautiful words in my brain for nourishment. These days, I memorize passwords or directions, and very few words for the simple pleasure of recall. I hope to commit more verses to memory.

Never Again Would Bird’s Song Be the Same

He would declare and could himself believe
That the birds there in all the garden round
From having heard the daylong voice of Eve
Had added to their own an oversound,
Her tone of meaning but without the words.
Admittedly an eloquence so soft
Could only have had an influence on birds
When call or laughter carried it aloft.
Be that as may be, she was in their song.
Moreover her voice upon their voices crossed
Had now persisted in the woods so long
That probably it never would be lost.
Never again would birds’ song be the same.
And to do that to birds was why she came.

I loved Frost’s depiction of the influence of Eve, the biblical first woman, and her influence. That’s what drives me, makes me passionate, the quest to have an influence on others. Eve wasn’t just softly eloquent, as she is portrayed in this poem. She persuaded Adam to try a new product, the fruit from a tree. She was the first advertising genius, using the power of her gender to sell. Or at least, that was his excuse for trying the apple. “She told me to do it.” Caveat emptor, Adam.

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