When Everything Went Wrong

100millionlogoI wish this were fiction, or that I were reading this story, rather than remembering it.

About a year and half ago, my boss pulled me into his office. “We have to put you to part time,” he said. “Budget issues. But, we’re able to keep your benefits.”

Thank God, because what felt like a minute later (OK, 2 months later), I found out I was pregnant.

My husband had recently graduated from one of the most prestigious law schools in the country. A place that could make you swell with pride, but still couldn’t get you a job in this economy, apparently.

After my first trimester, he got an unpaid internship near his family. No longer able to afford our rent, we moved in with his parents, super optimistic that soon he’d get a job offer, and we’d have our own place before the baby came.

When I moved up there, he was acting weird. He’s usually the happiest, most fun person in the world, but he’d transformed into a really cranky hermit. Kind of like when my cat was sick and hid behind the furniture.

“You’d think you had cancer the way you’re acting,” I said. “Jeez, it’s just money and job. At least we’re not like other people with those kinds of problems.”

Why did I say that? Did I sense something? It makes me cringe now.

Days later, I watched him walk across a department store. He was hunched over like an old man. His skin looked gray. He had been complaining for months about extreme fatigue.

He has cancer, I thought, then chastised myself for being pregnant and paranoid. Why was I forever catastrophizing?

That night I prayed, “God, thank you that he does not have cancer, but if I’m right, we need to know before it’s too late!”

A week later, he called during lunch. “I have good news and bad news. The good news, I finally have a job interview. The bad news, I have some pain in my left side. I’m going to the ER after work.”

Take an antacid, I told him, and then sat and worried. This was the man who once walked a mile with a broken leg, uncomplaining. If he said he hurt, something was wrong.

I didn’t go with him to the ER. I didn’t want to expose the baby to any unnecessary germs.

He texted me “They think it’s a kidney stone.”

I googled kidney stones and started to cry.

Next text: “They think it’s an abscess.”

That worried me. Abscess was getting closer to tumor in my mind.

“Do you think its cancer?” I asked my mother-in-law.

She had that look, like, are you a crazy pregnant lady? “Of course not, do you know how rare that is?” she said.

No more texts. No more news. His parents went to the ER to pick him up.

When they walked in the house, they all looked shell-shocked. No one could look at me.

“It’s cancer.” Someone mumbled.

None of us could say a word. My husband and I held each other, and tried to sleep.

Your 100 Million Prayers for Cancer

Lotus Temple, India

Lotus Temple, New Dehli, India

I had this idea. Why don’t I ask all the people who are praying for us to post photos with a sign that says “100 Million Prayers for Cancer.” Wouldn’t that be neat?

I can just envision all the fabulous photo opportunities. “I’m going to launch today,” I think.

Days pass. “Problem is, “ I think to myself, “I don’t know how to do it. Maybe I’ll get some student to do it for me. I’m too busy.”

I called an old college friend of mine, who I haven’t talked to in ages for advice. She’s great at social media stuff. “What are you waiting for?” she finally asked.

“I don’t know,” I thought. “To plan everything just right? To feel confident? What if I mess up? What if I look stupid?”

Then I thought, “Who cares?”

You know what? We get so caught up in how we look to others—OK, I get so caught up in how I look to others that I lose track of what’s important sometimes.

When it comes down to it, I really don’t care if everyone in the world sends me a photo or says a prayer. I just want my husband to get better. I want his cancer to go into remission. I want cancer researchers to come up with more breakthroughs. I want more patients to have access to clinical trials and new medicines. I want cancer to go away!

Today is the 10 year anniversary of when my husband and I first met. I want another 10 years! And then another, and another and another! I’m greedy for time.

I like to remind myself that all of my dad’s doctors said he couldn’t live one year, let alone the 15 he actually did. Dad walked me down the aisle on my wedding day! “Impossible!” they all said. I dream my daughter will have that same joy.

I’m calling this idea 100 Million Prayers for Cancer, but I don’t think I actually need 100 million prayers to get God to listen to me. I don’t need this to “go viral” in order to have a miracle (or not.)  Do I really need people to pat me on the shoulder here? No. I’m over it. There are more important things.

Cancer is something that regardless of what you believe or don’t believe, whatever your politics, your culture, your nationality, your age, how you look, how much money you have, or where you live— we all can agree that CANCER HAS GOT TO GO.

So, wherever you are, please say a prayer or send positive vibes, that cancer will finally get its cure. And while you’re at it, please pray for my husband’s healing and for everyone out there, whether you know them or not, who is fighting this crazy, scary battle.

Underneath it all, this is what matters. This is what we all share. Love and fear and loss and loneliness. We forget that we’re all connected, that we’re not alone.

Please post a photo in my gallery with a sign that you’re praying. I guess I’ll start a tumblr site soon. Bear with me. I’m a little technically challenged.

Thank you.

If you would like to do more than pray, please feel free to make a small donation, or heck, if you can afford it—a large one, to Memorial Sloan Kettering Cancer Center’s rare kidney cancer research fund.

Please post your photo on 100 Million Prayers’ facebook page, or tweet #100millionprayers. 

100 Million Prayers on Every Continent!

antarctica-mapIt occurred to me that we had folks praying for us on every continent except Antarctica. On Friday, I decided to remedy that. I soon received the following email from the point of contact at Amundsen-Scott South Pole Station:

Jen,

Your email has been passed on to our personnel in Antarctica who will be saying prayers for you and your family.

E

Here’s what I had written. (I’ve omitted names.)

To Whom It May Concern,

I’m guessing this is the first request of this kind you’ve received, but please bear with me a moment. My name is Jen . I currently live outside of New York City in a New Jersey suburb, and I’ve just had a year for the record books.

But first—my “ask.” I’m writing to request good thoughts, positive vibes, good hopes to the universe or prayer—whatever your personal beliefs call it. (I’m not worried about labels.)

My 35 year old husband has a rare advanced form of kidney cancer with no effective treatment. We discovered this last year when I was 28 weeks pregnant with our first child. We were living with his parents at the time (and still are) as he was unemployed, and I was down-graded to part-time. He had half his kidney, the tumor, and 12 lymph nodes removed. Afterwards, the surgeon said it was a technical success, but his expression appeared grave. The tumor was “curious.”

By this time, I was 32 weeks pregnant and completely freaking out. I had had a perfectly normal pregnancy up to that point, but my blood pressure suddenly spiked, and I had a seizure and nearly bit off my tongue. Within an hour, I had a c-section, and fortunately they were able to save my life and our daughter’s.

She was in the NICU for six weeks, on a breathing monitor for six months, but she is one year old now, and is doing miraculously well. She’s a gorgeous, hilarious, golden child, with the happiest smile. She made friends with all the people on the airplane last weekend when we flew down to X. (What baby does that?)

Anyway, soon after my husband’s surgery, we found out he had this terrible cancer with no treatment. The doctor seemed so pessimistic, it was depressing, but the next two CT scans were clear! We were feeling hopeful!

Then Christmas time, CT scan three. The cancer was back. He was able to be put in a clinical trial that would contain his cancer for a time, but not cure it.

I felt pissed and miserable. All this stuff HAPPENED to us, and I was sick of it. How could I fight back in a creative way? I started a blog called www.100millionprayers.com, and we’ve managed to raise around $70,000 for kidney cancer research for my husband’s specific cancer at Memorial Sloan Kettering Cancer Center in New York.

I also have been lighting up the world with prayer. We have friends and strangers on every continent praying for my husband. Villages in Kenya, Nigeria and Uganda. Prayer chains from Lima, Peru, up through the Andes and into the rain forests. Cities and tiny towns all over the USA and Canada. Friends in Russia, China and Mexico. I wrote a letter to every discalced convent in the English speaking world—U.S., Canada, England, Ireland, Scotland, Wales, New Zealand and Australia. Friends translated it into Italian and Spanish and I sent it to Italy and half of South America. Nuns all over the world have been writing me the sweetest letters that they are praying for my family.

It occurred to me that I had people praying and thinking of us on every continent except Antarctica. Will you help me remedy that?

We have the best oncologists and scientists in the world and thousands of loving thoughts behind us. We have so many caring friends, old and new, pulling for us. I don’t know what’s going to happen, but I believe there’s beauty and power in all of this mess.

So, please join us, Antarctica inhabitants. Just you and the penguins, I guess. If you would please pray/send good thoughts/ good vibes/ light a candle/ wish on a star that my dear husband will be healed, I will be eternally grateful.

He is starting a new experimental treatment in two days, so this is a very critical time.

With sincere thanks,

Jen

The Gene Sequencing Plan is On! Please Pray We Find the Key.

For months, I’ve been calling the hospital where my husband had his surgery. “I want to have the tumor sequenced.  Where is the rest of it?” “I don’t know,” or “I don’t know, I think we already sent out all the slides for diagnosis.” Always a negative response, or an unreturned call. It was so discouraging.

During this time, everyone I spoke with told me story after story about tumors that were discarded after the surgery, making genetic sequencing impossible for so many. This made me feel certain his tumor was gone. I felt almost foolish for trying.

It finally occurred to me that “I don’t know” is not a definite answer. I decided to give it one more shot. With almost no hope left, I asked my husband’s oncologist to help me speak with the right person. He did.  More confusing phone calls ensued, but I worked my way up the food chain to the head pathologist at Columbia.

Imagine my delighted surprise when I found that the rest of the tumor is still at the hospital! I also learned that MSKCC already ordered 15 more slides of my husband’s tumor and healthy tissue back in March. Evidently, his cancer is being studied somewhere. My husband signed up for every possible test and trial, so it could be in a variety of places. We’re trying to find out where it is. If possible, I’d like his doctor to keep an eye on this specific research, in case they find something that could help.

Anyway, we ordered the gene sequencing test the very next day! I simply had not made the right connections.

A company called Foundation One is mapping the DNA of my husband’s tumor. We hope they’ll find a connection with another cancer that has an effective treatment. We could come up with nothing, or we could “find the key.”

I’ve heard stories of folks that have had gene sequencing, and it didn’t help (e.g. Steve Jobs.) But then, you hear stories like this man, who had the sequencing; they found a similarity to another treatable cancer, and now he’s cancer free.

I don’t know if we’ll find something useful or if it will be a dead end, but I’m so grateful we can try.

Please keep praying or sending positive vibes that they’ll find the key to this cancer, and that the key will work. Please ask everyone you can think of to pray, too. I believe these connecting prayers and thoughts are vital. It gives me strength knowing that so many people are pulling for us. Thank you all so much.

 

Please continue to pray for the 30 others in Robert’s clinical trial, that they will be healed, too. Please pray the treatments will work. Please pray for all people with cancer. Please pray for the researchers and doctors, that they’ll finally have the breakthrough of our dreams.

The MSKCC Research on My Husband’s Cancer

I’ve received details about the research we’re supporting at Memorial Sloan Kettering. I had thought it would exclusively study my husband’s type of cancer (Papillary Type 2), but they are studying his type of cancer along with several other rare types of kidney cancer. The rationale is that these types of cancer are SO rare, that it would be difficult to get a pharmaceutical company to support a treatment for just one of them. The hope is that there will be a common connection between several of these cancers, widening the pool of possible patients. I’ve copied below the complete proposal. It’s pretty impressive, exciting stuff. I asked them for a few more details, and here’s what else I know. It DEFINITELY includes my husband’s type of cancer. (Unfortunately, since his tumor was removed at another hospital, they don’t have his specific tumor to study, which seriously bummed me out.) However, they have 100 tumors that they are going to gene sequence. Three of those tumors are papillary type 2 and seven others have not yet been identified, but they suspect are my husband’s type of cancer. I do not know the exact status of where they are in this research, or how much more money they need. (I guess that would be helpful to know!)

I wanted to let those of you know who have already donated what we’re supporting. If you haven’t donated yet, but were considering it, this could help you with your decision. It’s really happening, and you’ll understand why I keep reliving my story of losing and then finding our rental car key in Hawaii. It’s the same idea.

It’s impossible to guarantee that this research will help my husband. But, it’s the best thing we know to do. I believe in God and science (most days, both).

We donate, and we pray, and we enjoy today. Thank you for your prayers and support. If you look at our donation page, you’ll see that we’ve raised about $64,000 for MSKCC. That’s not entirely accurate because it doesn’t include the checks that people have mailed in. The real total is closer to $70,000, which is amazing!! What we give matters. Even small donations matter. You matter. I matter. My husband matters. The 30 people in his clinical trial matter, and all others with rare kidney cancer (and all cancer!)

Think of your donation as buying lottery tickets for those who just found out they won the “anti-lottery.” Cancer or misfortune could strike any of us at any time. Pay it forward. Pray for a cure.

MEMORIAL SLOAN-KETTERING CANCER CENTER

KIDNEY CANCER RESEARCH OVERVIEW

OVERVIEW

Memorial Sloan-Kettering Cancer Center (MSK) is the world’s oldest and largest private institution devoted to cancer. MSK’s mission is to carry out extraordinary patient care, leading-edge research, and transformative educational programs. Since our founding in 1884, MSK has played a major leadership role in defining the standard of care for people affected by cancer. This is a particularly exciting time for us as we look forward to building upon our groundbreaking research to provide more effective and safer treatments for our patients; to define strategies to help people reduce the risk of developing cancers they might be genetically predisposed to develop; and ultimately, to prevent the disease from occurring at all.

RARE KIDNEY CANCER RESEARCH AT MSK

Under the leadership of Dr. Robert Motzer, MSK is a leader in treating rare kidney cancers. We have been the predominant source of the data and publications that are driving kidney cancer understanding and treatment worldwide. MSK has made rare cancer research a top institutional priority, committing critically-needed resources and recruiting high-profile investigators such as Dr. James Hsieh, a world-renowned physician-scientist and medical oncologist focusing on kidney cancer.

Using our basic knowledge of rare kidney cancer, our goal is to gain insight into all forms of rare kidney cancer through long-term research and development, including papillary (or chromophil) carcinoma. As you know, this is a rare type of kidney cancer that can develop as individual or multiple tumors appearing either in the same kidney or in both kidneys. There are two types of papillary cancers, type 1 and type 2. Type 1 is more common and usually grows slowly. Type 2 papillary tumors represent more than one category of disease but, as a group, are more aggressive and may follow an unpredictable growth pattern.

Our cancer research efforts have all benefited from the sequencing of the human genome, which has provided valuable insights into the way genes function in normal tissue, and what goes wrong in cancer. Our increased understanding of cancer at the molecular level is what has yielded remarkable new technologies, diagnostic procedures and new drug discoveries that are resulting in more effective therapies and clinical interventions.

MSK has established an efficient infrastructure to quickly absorb work related to rare kidney cancer. This includes resources such as a tumor bank and the High-Throughput Screening Facility, an exceptional, industry-grade resource that can test thousands of chemical compounds quickly against specific cancer targets.

Biobanks are crucial to our research endeavors in two ways. First, they provide inputs for the gene-based and protein-based studies that are involved in developing targeted therapies and improved diagnostics. Second, combined with patient records, they provide an invaluable resource from which to undertake correlative studies on patient outcomes.

MSKCC’s leadership in rare kidney cancer research stems from collecting specimens of the majority of kidney cancer patients seen at MSK since 1992. This resource is now the largest and most comprehensive in the world – allowing investigators to ask crucial research questions about history, staging, pathologic features, prognostic indicators, and identification of high risk patients.

Based on experience, we expect our sequence efforts to find many mutations that have occurred during the formation of the cancer, from which only some will be important in promoting cancerous growth. Those important mutations will usually occur frequently in the disease. Sequencing tumor and normal DNA from as many patients as possible will allow us to prioritize mutations that occur in patients and validate them further.

Once a specific molecular mutation has been identified as meaningful in a cancer progression we can attempt to target the mutation with existing or new therapies. Clinical trials are the testing ground for treatment effectiveness and toxicity of such therapies. Of course, clinical trials require several layers of approvals and take a long time, often requiring studies on necessity, efficacy, risks and safety before being ready to present the study to the institution’s own Internal Review Board (IRB). All of this takes place before we can present the study to the Food and Drug Administration (FDA) for approval.

Clinical trials are particularly difficult to organize for rare conditions such as rare kidney cancers because multiple clinical institutions need to coordinate in order to enroll a sufficient number of patients. It is far simpler to plan the scientific, logistical, regulatory and statistical elements of a clinical trial within one hospital or cooperative group. Fortunately, in large part due to a generous donor like you, over the past year Dr. Hsieh has embarked on building our collaboration with all of the relevant institutions world-wide to enable this work.

CONCLUSION

The R. F. Williams Papillary Type 2 Kidney Cancer Research Fund will help to expedite the development of targeted therapies in order to provide more individual-based treatment methods. Thank you for your generous commitment to kidney cancer research at MSK.

Robert Motzer, M.D. is a board-certified medical oncologist with more than 20 years experience dedicated to improving the lives of patients with genitourinary tumors. His primary area of expertise is kidney cancer (renal cell carcinoma) and testicular cancer (germ-cell tumor). In addition to providing patients with the highest standard of medical care, he has led more than 50 clinical trials in patients with kidney cancer and testicular cancer, including national and international multicenter clinical trials.

Dr. Motzer’s research has helped to identify three targeted anti-angiogenesis drugs — sunitinib (Sutent®), temsirolimus (Torisel™), and everolimus (Afinitor®) — as effective first- or second-line treatments for patients with advanced kidney cancer. He has also helped to develop a system to aid in the prediction of treatment outcomes for patients taking medications for advanced kidney cancer; this risk system is widely applied by physicians internationally to direct the care of patients.

On a national level, he works to improve the quality and delivery of cancer care for individuals diagnosed with kidney cancer and testicular cancer through my healthcare policy and advocacy activities. He is the chair of the National Comprehensive Care Network Kidney Cancer and Testicular Cancer Guidelines Panel.

James Hsieh, M.D., Ph.D., is a renowned physician-scientist and medical oncologist who focuses on kidney cancer. Dr. Hsieh received his Ph.D. at the Johns Hopkins University and before joining the MSKCC he held faculty positions at Harvard Medical School and Washington University School of Medicine. With Dr. Motzer, they founded the MSKCC translational kidney cancer research program (TKCRP). After its inception in the early 2011, TKCRP has rapidly expanded its research agenda to include generation of new kidney cancer cell lines, establish human in mouse kidney cancer models, develop novel treatment strategy, and initiate cell death mechanism-based clinical trials. Their mission is to decode molecular bases underlying treatment response and cancer metastasis, and develop personalized treatment regimens for kidney cancer patients.

The Hsieh laboratory has made landmark findings in cancer biology. Dr. Hsieh and his team revealed that the oncogene MLL is regulated by site-specific protein processing, leading to purification of the responsible enzyme, which they named “Taspase1”. This discovery uncovered a novel class of enzymes. Taspase1 cleaves its substrates to enable fundamental biological events that dictate cell fate, cell cycle, and stem and cancer cell biology. Recent studies in the Hsieh laboratory suggests that Taspase1 can serve as a novel anti-cancer target, which leads to a joint venture among top medical institutes and NCI for the development of Taspase1 inhibitors for cancer therapy.

We Found the Key

20110814(085808)I haven’t written in awhile. To be honest, it’s been a long, dark winter. Everything I wrote seemed too dismal to share. I’ve been struggling, so I’ve been silent.

Yet there was one story I’ve been telling myself again and again. In August 2011, Robert and I went to Hawaii for two weeks to celebrate his law school graduation (Kauai and the Big Island). We spent a day at Waipio Valley, an ancient, sacred valley of kings. Most people don’t go into the valley. Its private land, but one of our friends knows a local man. He said if he came with us, then we could go.

Robert drove our rental car, a four wheel drive Jeep Cherokee, down the mile long, one-way dirt road with no guard rail, multiple hair pin curves, and a 45% grade. It was essentially straight down. When we reached the bottom of the mountain, we ventured through two and a half miles of lush wilderness, over gravelly paths and rushing streams. Through palm trees, bananas groves, bright orchids and fragrant plumeria. Several wild horses approached our vehicle until finally we reached a waterfall at the back of the valley.

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There were a handful of non-Hawaiian folks from Kona, a beach town about two hours away, swimming in the natural pool beneath the waterfall. Our friend’s friend, “the local,” encouraged us to climb the waterfall. He said there was a second tier with a natural Olympic sized pool created by an even larger waterfall above.

I gave it a valiant effort, but it was too hard for me. I was frightened of falling. So, I told Robert that I’d wait below and they should go ahead. He grabbed my hand to help me down, and as he did so, our rental car key—the one with the big sticker that said “Do not get wet or I won’t work” slipped out of his pocket into the murky depths below the cascading water.

His face turned ashen. This was not a clear pool. The water was dark green and cloudy. Nothing beneath the surface was visible. It would be miraculous if we found the key, and even if we did, we weren’t sure if the soggy chip inside it would still work.

The Kona crowd started hooting and laughing. “Hahaha! You’re screwed! You will never find that key! It’s impossible! People lose things forever in this water! Don’t even try!”

My friend and I held hands and began to pray. I prayed to God, and she prayed to God and to Pele, the Hawaiian volcano goddess, so that all bases would be covered. Robert kept diving down, again and again, swimming deep under the water, making small circles around where he thought it dropped.

“Get ready to walk back to Kona!” our nay-sayers continued.

I imagined trekking through the rough roads, rivers, and banana groves, practically barefoot in my plastic flip flops that looked more like Barbie doll shoes. We’d have to retrace our steps, literally over rivers and a mountain, drive two hours and then spend several hundred dollars on a new car key. Such a terrible ending to an incredible adventure.

Robert repeated his dive under the surface, over and over for 15 minutes. My friend and I kept praying. Our audience kept laughing.

Finally Robert came up gasping for breath, triumphant. “I found it!”

Thank you, God.

The laughter stopped. “Wow, man, that’s pretty cool!”

“Yeah, good for you, I didn’t think you guys had a prayer!”

“Well, let’s just see if the key works,” I said nervously.

It did.

We drove off to the black sand beach, built a fire, watched the moon rise and cooked steaks on a stick over the open flames.

I remind myself over and over: Against all odds, we found the key. Maybe it’s a sign that some researcher will find an unexpected answer, a key if you will, to unlock this cancer.

Who knows! Anything is possible with prayer, determination and maybe a little luck.

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Please continue to pray for my husband’s healing, the 30 other people in his clinical trial, and that the researchers will find the key to help them all.

 

From the New York Times Vows Section to Cancer, What Next?

Williams0373The numbers 00000000 popped up on my caller ID, and I knew it was The New York Times. We were standing on top of Whiteside Mountain, North Carolina on our honeymoon. Our wedding announcement had appeared in the Times’ venerable Vows section the day before, which I thought was a hoot since we were not rich, overly successful, or particularly well connected.

“Are you available today to be interviewed for a video story?” the reporter asked. I imagined that their first-choice couple had cancelled.

I looked at my dirt stained hiking boots and regretfully declined. However, if the Times had covered our story, you may have heard something like this.

When I met Robert in August 2003, I was coming out of another bad time. Six months earlier, my dad had another one of his heart attacks; my mom had a near fatal car accident and was in a wheelchair; my brother shattered his ankle in a freak hacky sack accident and needed surgery, and I went home to find the basement covered in vomit and cat shit. Our poor little Hazel had to be put down. I took six weeks of family medical leave to care for them all. Depressed, I was talking about quitting my publishing job in New York, moving back to Pennsylvania, adopting six kittens and taking up quilting when my friends staged an intervention. They posted a dating profile on salon.com.

I’d tried online dating before and had low expectations, but the headline “Fair and Balanced” caught my eye. His name was Robert, and he entertained me with stories of sassy southern relatives and archeological digs in Ireland. We decided to meet at Angel’s Share lounge in the east village for cocktails.

Robert teases me that I was late for our first date. On the way out of the subway, I noticed a street artist’s necklace that reminded me so strongly of my late grandmother that I felt a strange sensation, like she was standing beside me. I hurried to get cash at a nearby ATM so I could buy it.  As I raced to meet Robert, I had a premonition. Had Nana chosen this moment because Robert was going to be important?

It was instant attraction. We discovered many odd coincidences in our stories. Both our fathers were ministers from blue collar backgrounds. Our mothers were both daughters of bank presidents. In the weeks before meeting, we had crisscrossed each other twice, practically brushing sleeves at the Howard Dean rally in Bryant Park and at Marble Collegiate church, where his dad was an associate pastor.

I felt like my world suddenly switched back to color. One typical Saturday shopping in Park Slope, I told him that I felt like we were on vacation. How could normal life be so fun?

We traveled everywhere: Cape Cod, the Berkshires, Vermont, Russia, Finland, Estonia, Ireland, and the Caribbean.

We dated for five years before he proposed on the eve of my 30th birthday. He gave me his great-grandmother’s Edwardian engagement ring, which fit perfectly. We were married a year later, three days shy of what would have been her 100 year wedding anniversary.  We held the service at New York Avenue Presbyterian in Washington, DC where Abraham Lincoln worshipped, where Peter Marshall preached “one nation under God” and where Robert’s maternal grandparents had married during the Second World War. My father walked me down the aisle, beating all medical odds, and turned and performed the ceremony along with Robert’s father.

Our wedding day was one of the shiniest, happiest days of my life.

I remember telling our story to a stranger soon after the wedding. She said, “Damn, you’d better never get divorced. It would be too embarrassing.”

I laughed and thought, “Nothing will ever tear us apart.”

This past summer, a week before Robert’s kidney surgery, we sat on the deck of my grandparents’ lake house wondering if cancer would do exactly that. While I was inside napping, Robert heard a loud buzzing behind his ear. He swatted and turned to see a hummingbird staring him in the eyes. I felt it was Nana reminding me that she was still there watching over us. If she could, I know she would try to protect us from the disease that stole her life.

Please remember to pray for my husband, for successful treatment and healing, for the 30 others in his clinical trial, and that the researchers will find a breakthrough.

Wedding photo courtesy of Aaron Spicer. www.aaronspicer.com

What to Say to Someone Who’s Going Through Hell (Part 2)

Star Jimenez Johnson
By Star Jimenez Johnson

I first met Jen when I shared an apartment with her in Astoria, New York. I moved in on a Saturday & on Sunday night it dumped feet of snow and so we immediately got to know each other. We shared books, cups of tea, traveling stories, and dating advice. I remember when she first met Robert. Her spirit was up and Robert balanced her perfectly. Jen was in love. And more importantly Robert loved her back. To see how their love has grown and their family has blossomed was beautiful to see. Along with you, my heart aches to see Jen and Robert facing their own hell. I pray her hell does not become my own.

I left New York City in 2005 and moved back to Orlando, Florida where I had some friends. I met my own knight, Roger, who was patient, kind, loving, and taught me how to truly love. He could handle my shenanigans and balance me. The best day of my life was the day we were married. Finally I had my ultimate teammate & confidant. My own person to lean on forever. I remember one particular day over that summer where I really felt happy & true joy.

My own hell started on the early morning of August 22, 2008 – the day before our six-month wedding anniversary. A moron travelling on bald tires on wet Florida roads came across the median of a major Orlando highway into the driver’s door of our car. My husband was driving and never regained consciousness. His body was wrecked and his brain swelled so much that it lost all the wrinkles. The space between the two hemispheres of his brain was gone not to mention all his other injuries. And I was left when a shell of man that I loved and needed. Doctors informed me that this was it. The man who had saved me from myself was gone. Six days later the plug was pulled and I was left in hell. At 27 years old, I was a widow.

I heard lots of gems along the road since that day. “Oh you are young, you’ll find love again.” “At least you don’t have kids.” “You are so brave.”

But I could see what they were really thinking: “I am so glad it is not me.”

Many people offered to help me. But it is hard for me to accept help. Not to mention, I had no idea what I really needed. I had no idea how to put into words or actions or requests of what I needed. Here are things I did need and did help.

  1. Keep plans with me. My life had just drastically changed in a matter of less than a week. I needed things that were not going to change suddenly.
  2. I did not have an appetite and ended up losing 30 pounds in about five months. But I still enjoyed having people come over to cook dinner for me and inviting me to their homes.
  3. Be patient with me. Losing my entire daily existence is not something that has a timeline. Grief is not finished in a month, six months, or even a year.
  4. Talk about my person. It helps to know you are thinking about them too. But talk about other stuff too. My mind was always on it. So some distraction was nice but do not ignore it.
  5. If you know a movie, book, or show that I normally watch is going to be too touchy, warn me. I could not watch “PS I Love You” at first and I had episodes of “Grey’s Anatomy” that were a little too much for me. I adored those friends who would call or text to let me know ahead of time. I still have commercials I cannot watch and have not read the “Twilight” books since Roger loved that kind of book.
  6. Do not look at me with pity. I hate that look. It is one of the reasons I don’t tell a lot of people my story. I am not that strong. I just did not have another choice. I had to keep breathing and living like everyone else even when I did not want to.
  7. When I do start dating again, it does not mean I am over it all. It is never over. It scars and does not hurt as bad. But it is still there. Always.
  8. I will cry randomly. I will have meltdowns. Don’t judge me. It may seem stupid and over reacting to you but I cannot control a lot of things around me. Please be patient with me and try to be understanding. My “silliest” meltdown was over a restaurant forgetting my salad and putting bacon on my meal. I went off on the waiter and burst into tears. Poor waiter but some of the “friends” at the table could not forgive me.
  9. I may find something insignificant to control since I cannot control anything else. For me, I started to control my laundry sorting to an obsessive level and recycling. My nickname among friends became “The Recycling Nazi”. Be patient with me. Some of it will fade. Now I am just a recycling enthusiast.
  10. Don’t ask me what I need, find something I need. Come take out my trash. Offer to take my car in for service. Go with me to appointments. Clean my house.

Visit Star Jimenez Johnson’s blog, And you may ask yourself, well, how did I get here? http://www.facebook.com/#!/starswidowblog

What to Say to Someone Who’s Going Through Hell (Part 1)

Nothing feels more socially awkward than going through tough times. It’s hard to admit to myself and the world that some of my wildest nightmares, not my wildest dreams, have been coming true.

It’s disappointing. Who wants to be “That poor family with the sad story?” I don’t.

Contemplating my husband’s cancer makes me feel overwhelmed, vulnerable and strangely shy. I have absolutely no idea what to say to anyone. (Which if you’re one of the folks waiting for me to call or write you back, um, that’s why you haven’t heard from me yet. Sorry.)

Based on my own experience, I’m sure you don’t know what to say to me either. I’ve seen others go through hard times, and I am ashamed to admit that sometimes I’ve let moments, months, years (!) pass by and have said nothing to friends and acquaintances for fear of saying the wrong thing at the wrong time.

Now that I’m going through one of the biggest challenges I’ve ever faced, I would say that I’ve loved hearing from every person who’s thought to reach out to me. There’s no bad time to contact me, as long as you don’t care if I’m extremely slow at responding.

I know there are no magic words. I’ve appreciated receiving simple, heartfelt thoughts like, “I think of you often. I’m praying/sending good vibes, or I want to help if I can.” I’ve enjoyed funny stories, inspirational quotes, and reminders that good things can happen, too.

I think the best thing you can say to someone going through hell is to just say something, even if it feels like it took awhile.

Now, let’s see if I can take my own advice and pick up the phone.

 

Tomorrow I will be posting Part 2, written by a guest blogger—Star Jimenez Johnson, a friend “who’s been there.”

Please remember to continue to pray for my husband, his researchers, and all others who are facing cancer, serious illness and feelings of hopelessness.Thank you.

Don’t Stop Believin’

Don't Stop Believin'!I don’t like to dwell on statistics. Instead, I think about my dad.

Dad died almost two years ago of a heart attack, and I think of him so many times throughout the day, it’s as if he’s still here with me. In 1996, his doctors told him that he had two months to two years to live. This went on for fifteen years! Every doctor’s visit the same: “There’s nothing we can do, maybe another year if you’re lucky.”

At first he felt crushed and depressed, but then he stopped thinking about it. He’d focus on cooking something delicious for dinner. He’d put tea lights all around, polish the furniture and make iced tea. He’d find something funny to watch, call an old friend and tell a joke. He’d go to the store and buy someone a present. For years, he’d call me every month and say, “I just bought you the best birthday present.” He’d have to tell me right away what it was.

Once dad went to the cardiologist. “There’s nothing we can do. This artery is 100% blocked.”

The next time they did a scan, it showed that his heart had spontaneously grown a tiny vein that circumvented the artery. This happens sometimes, but it is rare.

Dad told me this story about one of his particularly bad heart attacks. He said that the EMTs put him into the ambulance. His heart rate was very high. They said “We’re losing him.”

Dad grabbed his hand and said, “Please tell my family how much I love them.”

When he woke up in the hospital, his cardiologist peered down at him and said, “I have no idea why you’re here. There is no medical reason why you should be alive.”

I believe Dad’s secret weapons were prayer and a joyful zest for life. I wish I had the same joie de vivre he did; I am prone to getting scared. But, his story inspires me every day. We are not statistics. We don’t know what the future will bring.

I keep reminding myself, “Don’t Stop Believin!” No one knows what’s on the road ahead.