Here’s to “Hot Widows” and New Beginnings!

 

Six weeks ago, I was laid off. For a long time, I’d felt like I was running on half a tank, but I had finally sputtered and stopped. I had nothing left. That press release I sent out for approval? Yeah, it came back with every word rewritten. Ouch.

Time to go. Getting laid off felt like a blessing. It was a respectful and friendly parting. It felt like one more act of generosity and kindness from a company that had gone above and beyond in supporting me through the worst time of my life.

If you’ve ever read my blog previously, you’ll know that my 36 year old husband died of cancer in March 2014. And I haven’t posted anything since, until now. Felder’s death broke me. I took A LOT of time off work. I should have been pulling up my bootstraps alone with no support, dammit, this is America! Instead, I had legions of family, friends, co-workers and strangers knocking themselves out to be generous and supportive. Their love, along with my daughter’s, helped me realize that I needed to love myself.

When Felder died, I felt this empty chasm where he once was. All of the love and energy that I gave to him had nowhere to go, suddenly. I dreamed about being a philanthropist, or dreaming the Peace Corps. I finally realized that I had to direct some of that love towards myself.

I took a good look at myself in the mirror. I couldn’t recognize this person. I had been drowning my sorrows in packages of Oreos, ice cream, cheese, and casseroles. I felt I “deserved” these treats. Suddenly, I realized that feeding myself this way was not a loving way to treat myself, and it wasn’t making me feel any better. I deserved to be healthy. I deserved to feel beautiful.

I said out loud to that face in the mirror, “If I have to be a f***ing widow at 36, then I am going to be a f***ing HOT WIDOW!”

“Hot widow.” Well, that made me smile. I stood a little taller. It wasn’t easy, but I gave up my sugar addiction, along with the white flour and butter. Within seven months, I lost 40 pounds! (Thank you, 17 Day Diet.)

This culture loves a good makeover story, but I’ll admit that as of today, I’m still not quite where I want to be. I finally look like a confident, successful person, but I feel overwhelmed with the prospect of new beginnings, and getting started.

I’ve finally gotten rid of all the obstacles, and realized that the only one holding me back at this point is me.

My favorite poet, John O’Donohue wrote “To refuse to begin can be an act of self-neglect.”

I felt like not getting started on my dreams was just another way I was being unkind to myself.

“You haven’t re-launched your blog yet,I say to myself.

“You’re not really a writer. Writers write. You are all talk!” that voice inside me (whom I shall call “Mean Jen”) won’t stop saying.

Ugh! I hate “Mean Jen!” She’s such a bully! No wonder I avoid myself and phase out over stupid Internet stuff instead of working. “Mean Jen” is such a drag! I swear, she makes me feel so ashamed of myself that I focus on guilt rather than creating something new.

“Above all this: Love one another as you love yourself,” Jesus commanded.

How do you even love YOURSELF? This is what I’m still figuring out. I’ve come to realize that I’m really good at loving other people, but I’m I have a lot to learn when it comes to loving myself.

So, I am re-launching this blog as an act of self-love. I have a story I need to tell. I have habits to change. A new life to build.

I started 100 Million Prayers in an effort to save my husband. It actually saved me.

 

Remembering Felder Williams

Felder and KellaWILLIAMS, R. Felder, 36, of Ridgewood, NJ, died Saturday, March 22, of kidney cancer. Note that he did not “lose the battle.” Cancer never took his hope, humor, intelligence or love. The strength he maintained throughout his illness would put any superhero to shame. He fought for life until his last breath.

Felder was an extraordinary soul masquerading as a regular human being. He was proud to protect children as a deputy attorney general for the state of New Jersey. He always questioned authority, fought for the underdog, and closely followed world events from early childhood. Felder was a gentleman and a scholar, passionate about literature, music, poetry, history, law, travel and food. Sadly, dinner conversations will never contain the same wit or substance.

Felder studied hard, partied hard, and was an outdoor enthusiast. He hated small talk, bad coffee, Facebook, and stupid TV. He was sensitive, authentic, and could be endearingly clumsy. He was always kind.

Felder adored his wife, Jen and their 20-month-old daughter, Kella. Their love was true, and it will continue forever.

Felder was loved, liked and deeply esteemed. His family would like to extend their deepest condolences to all those who did not know him.

A memorial service will be held Saturday, April 5, at 2 pm at the United Church of Spring Valley, Spring Valley, NY. In lieu of flowers, please consider donating to the Felder Williams fund at Memorial Sloan Kettering Cancer Center.

What’s Happening??

Sorry for my long silence, friends and readers. Last fall, I was feeling hopeful. My husband had been enrolled in one of the most exciting clinical trials in cancer. It was for one of these PDL-1 immunotherapy drugs that everyone is gushing over as a breakthrough treatment. Indeed, some patients have had a phenomenal response and have gone into a seeming remission.

Unfortunately, Felder was among the 50% of people who did not respond to the drug. He tried three more types of chemotherapy, and finally this week, he entered into home hospice. He is too weak to try anything else.

I told him I was still praying, but obviously my prayers weren’t doing a heap of good, maybe I should stop.

He grabbed my hand and said, “DON’T STOP.”

So, I told him despite all medical evidence, I will continue to ask for a good old-fashioned, “Praise Jesus,” rock-n-roll miracle.

When I think, “Well, why should I get a miracle when so many others don’t?” I just ask God to give one to everyone who asks. The world needs more miracles, don’t you think?

Bad News for Christmas

100millionlogoTwo months had passed. It was time for that dreaded CT scan.

I felt tremendous anxiety. When I’d be up with Kella in the middle of the night, I’d stare out into the darkness and focus on a pinprick of light in the neighbor’s yard.

There’s a light! Over at Frankenstein place,” I’d sing to her. (I always loved the Rocky Horror Picture Show.) Somehow, it felt like a gospel song.

My husband insisted that I not come to the appointment with him. He promised to call me.

After I dropped Esther off, I wondered why I hadn’t heard from him yet. I saw a street sign. “Robert St. Dead End.” My husband’s first name. Was this an omen?

A few minutes later, he texted me. “Cancer is back. Starting clinical trial December 20.”

Shit. The day after his 35th birthday. Five days before Christmas.

When he came home, I learned that it was a small amount of cancer, but the chemotherapy was not expected to kill it, only to contain it for an uncertain amount of time. And after that? The doctor had no idea.

I felt like I’d been body slammed. For days, all I could do was stare into space. I could not concentrate. I could barely speak. I would look at all of our wedding pictures and cry. I’d see a particular snapshot that I loved and imagined placing it by the guest book at his funeral.

Three days later, I told myself to knock it off. The future was imaginary, so I’d better imagine a good one.

I glanced over at the front page of the New York Times, and my eyes practically bugged out. “In Girl’s Last Hope, Altered T-Cells Beat Leukemia.”

Emily Whitehead! This was the little girl from my hometown! I had gone to high school with half her cousins. The news article explained how she had been close to death. There were no more treatment options, so they tried something that had never been done. They deactivated an HIV cell and reprogrammed to attack the cancer. Miraculously, it had worked! Six months out, remission.

The article went on and on about all the science, but I knew the back story.

The doctors had told her parents that she had a 1 in 1000 chance of surviving the night following the experimental treatment. My facebook feed had been blowing up with prayer requests. (My mother-in-law and I had prayed for her.) I heard somewhere that tens of thousands of people were tweeting about it. People hung purple ribbons all over town in her honor. “We believe!” was their mantra.

And she was from Philipsburg, Pennsylvania. My connections to Philipsburg ran deep. It was a tiny, middle of nowhere town where I had spent my teenage years. At the time, I felt like I didn’t fit in there, but I later learned that my paternal great-great-something grandfather had settled there in 1760, after he’d completed his 10 year stint as an indentured servant. I could write a whole book about why I took this odd coincidence as a good sign. (Maybe I will.)

I thought, “Well, I guess it’s a good thing I got put to part-time because now we live close to New York, and my husband is seeing the very best doctors in the world for this particular type of cancer. Problem is, there’s not much research happening, as the cancer is so rare.”

I felt discouraged for a moment. Then I thought, “I guess I’ll just have to support the research, too, and get as many people as I can to pray for him.”

I laughed to myself. It seemed so hopeless. “Maybe I need 100 million prayers.”

That struck a chord. “That’s what I’ll do! I’ll start a blog, and I’ll raise a whole bunch of money. Then I’ll get a prayer campaign going, too. Who knows what could happen?”

I was getting revved up. I was sick of feeling so helpless. Plus, I was hating my life. All this stuff had just happened. Could I turn around and make something happen? What did I have to lose?

I immediately called my husband’s oncologist. “How much money do you need to research this cancer? Ballpark.”

“$250,000 could do a lot. $500,000 a whole lot more. $1,000,000 could fund a whole program.”

“If I could raise it, would you study his type of cancer?”

“Yes,” he said. “But how do you intend to raise it?”

“Social media. I’ll start a blog. I do PR,” I said, with some bravado.

“Talk to my development department. I’ll send you their contact information next week.”

After we hung up, I cold called the development department.

“How can I raise money to support research for my husband’s type of cancer?”

“Do you want to start a memorial fund?”

“No, my husband is still alive. Wouldn’t it be great to give money toward a cause that might actually help?” I laughed nervously.

“What fund do you want it to go in?”

“I don’t know,” I said. “I want it to go towards studying his particular type of cancer. Can I just start a fund in his name?”

“We don’t open funds in someone’s name without a $25,000 starting amount.”

“I’m on it,” I said, feeling like I was really talking out of my ass.

Next up, convincing my incredibly private husband that I wanted to share our story.

“No way,” he said. “I’m still trying to get a full-time job. I don’t want my employer to know I have cancer.”

“Who cares about your job, I want you to live!” I cried.

“Just don’t use my name, OK?”  Fine.

I was thinking, thinking, thinking. When I picked up Esther the next morning, I barely spoke to her.

“This is insane,” I thought to myself, pausing at the stop sign. “Truly, my craziest idea yet! How do I even know if God answers prayers?

That moment a huge, red truck drove by. In big, gold scrolling letters, it said, “God answers prayers.”

My mouth gaped open. If I was waiting for a sign, it couldn’t be clearer. I knew then I was going to go for it.

A blessing.

100millionlogoMy brain was still showing as abnormal in scans, and my blood pressure was still too high, so my six week maternity leave grew to twelve weeks.

Suddenly, it was October. I was going back to work (still telecommuting), and we needed a baby sitter. I had put zero thought into this. Kella was not allowed to go to daycare because her prematurity put her at high risk for RSV, a common cold virus that could either a) kill her, b) put her in the hospital for weeks, or c) give her asthma.

We were not allowed to have friends over, take her to a mall, a church or any indoor public place. She could not be exposed to sick people or small children. Before we could touch her, we had to wash our hands. We were to be housebound until the end of flu and RSV season—six months.

I could only afford to pay someone minimum wage, and this person would have to come to our house, four hours a day. This did not sound promising in my mind. I envisioned a college girl watching TV while my child cried in her bassinette.

I asked the Bolivian lady who cleans my mother-in-law’s house if she knew anyone.

“How much?” she asked.

“$8.50 an hour.”

“Sorry, that’s too little,” she said. “I don’t know anyone who would babysit for that. It’s hard work!”

“That’s all I can afford,” I said, apologetically.

My husband’s best friend called. His wife is Peruvian, and their next door neighbor, a sweet woman from Lima was looking for a job. She couldn’t drive, so her options were limited.

“She’s the kindest person,” he enthused. “You will love her!”

I picked Esther up on Monday.

Esther is three years older than I am, but when it comes to homemaking, she is well beyond me. She married at 18 or 19 and had her first son maybe a year later. (He’s in college.) Her three younger boys are six, nine and thirteen.

She told me she’s been taking care of children since she was eight years old, when she was put in charge of her parents’ house. She would cook and clean before going to school. In the evenings, she’d babysit her premature niece. Practically raised her.

She cooked everything from scratch, using vegetables and fruits from their garden. Orchids grew in their yard. She adopted 15 stray dogs and trained them all perfectly.

Other aspects sounded less idyllic. After she had her first child, she had to hand wash his cloth diapers every day in a big boiling pot and hang them out to dry. She said it was so miserable, she’d cry.

Her husband worked on a cruise ship for a few years, and they’d only see each other three months a year. He spent most of his time in Finland. Finally they moved to the U.S., and they’re going through the process of obtaining citizenship.

If you ask me, we should beg this family to become naturalized citizens this moment. Esther is involved with every community activity in town to help the poor. They go to church twice a week, and she’s always cooking, bringing her famous tres leches cakes and banana bread to all the neighbors every few days. She seems to know everyone.

I think she fell for Kella instantly. Esther was worried about her choking again, felt intimidated by Kella’s breathing monitor, so she just held her the entire time.

She would read her Bible with one hand, while Kella slept, and would tell me that she was praying for my daughter and husband.

We’d have lovely conversations in the car each day. For many months, she was almost the only friend I could see because of Kella’s quarantine.

She would bring us apple cake, homemade breads and little samples of her Peruvian cooking. It seemed like every time I’d pay her, she’d come the next Monday with a new outfit for Kella.

I told her, “I am paying you so little. Please don’t give us too much.”

But, I realized that she is one of those people who shows her love that way.

She was a gift to us.

Oh Right, This is a Cancer Story, Isn’t it?

100millionlogoIn the midst of all this, my husband went to see the world maven of kidney cancer at Memorial Sloan Kettering Cancer Center in New York. The doc said it was rare, advanced, aggressive, no treatment. He wanted an immediate CT scan, and depending on what they saw, my husband could start an experimental clinical trial.

The first CT scan showed… nothing. No cancer! Take that Mr. Negative Doctor!

I didn’t understand why they didn’t put him on chemo now to prevent cancer growth in the future. It had to do with the terms of the clinical trial. There needed to be visible cancer. No standard treatment, remember?

We were in limbo, and so we just focused on being new parents for a bit. As I mentioned, Kella was keeping us busy.

Two months later, in the early fall, he had a second CT scan. I sat in the waiting room with his dad while he talked first to the doctor.

“You need to pump, don’t you,” my father-in-law said, kindly.

“How did you know?” I asked.

I glanced down at my soaked shirt. “Oh.”

My husband came back again, I assumed to bring us back for the big scary talk with the doctor.

“Let’s go,” he said, breezily. “The CT scan was clear.”

I felt like a large animal had been sitting on my chest, and it finally stood up. I could breathe normally again.

We walked out on the Manhattan sidewalk, squinting into the sun.

All the worries, anxiety, fear had suddenly lifted.

“Now we can worry about normal stuff, like jobs, saving money for a house. Stuff we’re supposed to think about,” I thought.

You never saw three sunnier smiles.

Home at Last!

100millionlogoKella’s six week stay at the NICU was coming to a close. She was a whopping five pounds!!!! (Woot!)

She was doing well, but was still more fragile than your typical newborn. She had central sleep apnea, just like all the other preemies in the surrounding cribs. Her brain was too premature to realize that she had to continue breathing during sleep, but her neonatologists assured us that she’d grow out of this. In the meantime, we had to keep her attached to a breathing monitor while she slept. A piercing alarm would sound if she stopped breathing.

By this time, I felt like old friends with several other “NICU mommies.” A sibling is the only person who can understand your childhood; these women are the only ones who will truly understand this experience. (Read their stories here.)

In order to “graduate” from the NICU, we were required to take a baby CPR and Heimlich maneuver class. We all laughed at our creepy looking baby dolls that we had to practice on. They gave me the heebie jeebies.

Finally, it was our turn to put our baby in her brand new car seat, little dress and hat. We waited for the valet to bring our car.

“Can you believe how long that took?” he complained.

“I know,” I said, half proudly. “It took us six weeks, but we can finally bring our baby home!”

“Oh, I meant how long it took me to get the car,” he mumbled.

I nodded. “Normal people problems,” I thought wistfully.

We brought her home. Let her grandparents hold her for the first time. And just stared at her. What were we supposed to do?

It was baby boot camp. I thought the NICU was exhausting. Every three hours, we had to feed her. I was only allowed to breastfeed her twice a day, so I was continuing to pump. Feed. Burp. Put her down. Pump. Wash. Maybe I’d have an hour to rest, bathe or eat before we had to repeat.

My husband was still convalescing from his surgery. His law internship was over, but he’d be working as a contractor soon. (Kind of like a full-time employee, but without benefits. Another stepping stone in the bullshit cycle of free labor, to “part-time” 35 hour work weeks, to full-time, 70 hour work weeks. God bless America.)

For three days straight, we didn’t sleep more than two hours a night. In the first 72 hours, she came down with an eye infection and a diaper rash. We had been to the pediatrician every day. I was worried that I might become best friends with these people.

Finally, we decided to divide our sleeping shifts.  I would fall into bed at 9 pm. My husband would wake me around 2 am, and I’d take over until about 6 am, when my mother-in-law would watch her for two hours, and I’d take a nap.

We were trying to get her to gain as much weight as possible, and to keep her growing.

It was both grueling, and beautiful. The schedule was awful, but here we were together caring for this amazing little person. We couldn’t understand how we could love her more each day, when we had loved her so much yesterday. It was like we were the Grinch that stole Christmas, and our hearts kept growing three sizes bigger. You’ve never seen prouder parents.

I was changing her diaper one day, when I noticed she’s suddenly stopped crying. I looked at her face, and her eyes were bulging, glassy, and her arms were stiff at her side. Milk was flowing out of her mouth. She looked like a corpse, or that creepy baby doll from the hospital.

I yelled for my husband. “She’s stopped breathing!”

Omigod, omigod, omigod.

Everyone came running up to the nursery. I looked at my mother-in-law—a doctor; my husband—a man, unsure of what to do next. They stood there looking at me.

“Jen,” my husband screamed, “Do it!”

I broke out of my reverie, and started pounding on her back, flipped her to my other arm and gave her three chest compressions, flipped her back over and pounded again. I blocked every thought out of my head, concentrating completely.

“Breathe, BREATHE!” I kept repeating.

It must have been 30 seconds, the longest half minute of my life, when finally she began to respond. I started crying.

“Is she breathing? I think she’s breathing.”

“Yes,” my husband replied, and held her tightly.

We stared at each other, dazed by another life-threatening moment. We wondered if this was the way things would be from now on.

We took her to the emergency room to make sure she was OK. Thankfully, she was.

Still, we worried, “What’s going to happen next?”

Hospitals Suck, Too.

100millionlogoAfter I finally left the hospital, a new routine emerged. My husband went to bottle feed our daughter at 9 am. I’d pump, then wash all the plastic parts with Palmolive. (They’re lying about it being gentle on the hands. My skin was practically peeling off.)

Then I’d go do kangaroo care at 11 am. Stay an hour or so, come home, pump and wash again.

Every two hours… pump, pump. I watched a lot of “Curb Your Enthusiasm” those days, and I’d try to fit in another NICU visit in the evening. I’d fall into bed and feel guilty for not waking up to pump. I did a handful of times, but it was miserable.

Get up, repeat. I felt like an exhausted cow.

At the time, six weeks of visiting our premature newborn at the NICU seemed like it would never end. I’d feel a pang every time I’d see a happy family leave the hospital with balloons, and their gigantic looking baby smiling in its car seat. That was how it was supposed to be. What had happened to us?

Kella was so tiny. When I’d hold her, she’d tuck her head under my chin and her feet would touch my navel. Her toes were like grains of rice.  Her hands the size of my husband’s thumb nail.

She slept a lot, but when she woke up, we’d get these little clues that this kid was a total card.

One day, my mom and I were talking to her in her “little glass house.” I told her she looked just like ET with that pink light on her toe, and I burst out laughing for the first time since she was born.

Honestly, she lifted her head, stared into my eyes, gave me a huge smile, and laughed back!

I thought, “This is my daughter.”

Sometimes I would stare at her and feel guilty. I’d stroke my slightly smaller stomach, and think, “You should still be there sweetheart. I’m sorry I failed you.”

A lot of time, I really didn’t think much of anything. I was still on blood pressure medication. Maybe that was it? I look like a lost psych patient in many photos from that time. It was strange to look in the mirror and not recognize myself.

One day, I was hobbling across the crosswalk to the compounding pharmacy for some of Kella’s medications. (I was walking slowly because I’d sprained my ankle a few months previously, and it was still bothering me a lot.)

A car was driving through and slowed, so as not to run me over. “You’re welcome decent lady!” the guy yelled out the window and peeled off.

I was dumbstruck. “Jeez, I just nearly died in childbirth. My daughter is in the NICU, and my husband has cancer. So sorry, I don’t look absolutely gorgeous right now, and by the way, thanks for not killing me, asshole,” I muttered under my breath.

It was a far cry from the old “hey beautiful lady!” I’d so often hear in my 20s. I’d hated that, too. Both felt dehumanizing. It occurred to me that my appearance was the least interesting thing about me. I may not look so hot, but I was a better person now.

It was a shame looks matter so much, I mused. How many beautiful souls do we overlook every day?

I went home, pumped, washed and visited my baby.

On the Day You Were Born

100millionlogoThe morning after his surgery, I woke up crying and puking simultaneously. What to Expect says vomiting in the third trimester is normal. (Well, I think it did. In retrospect, I was kind of out of it.)

On Tuesday, I called in sick from work. I felt spacey. Anxiety, I thought. Only five days previously, I’d been to my 32 week check-up, and everything was fine.

On Thursday, I went to therapy. What a dreary session. Talking about everything that had gone wrong and what might happen next had upset my stomach. I couldn’t eat anything, which was odd because at that point in my pregnancy, I ate like a 15 year old boy.

My husband was home by that time, lying in our room with a pain patch.

I slept in the back bedroom, so I wouldn’t disturb him. I missed our previous life. Happy in our own bed, in our own place. My mom was visiting us. She knew I needed her.

“Mom, will you stay with me tonight?” I asked. I didn’t want to be alone. I fell asleep and woke up around midnight. Mom was dozing at my feet.

“I don’t feel well,” I told her. I googled my doctor’s name, but couldn’t find his phone number.

I went to the bathroom, held my upper abdomen, and thought, “This pregnancy feels toxic.”

I gingerly lowered myself into bed, and that’s the last thing I remember.

They tell me I had a grand mal seizure caused by a sudden spike in blood pressure. It’s called eclampsia and is quite rare these days. When she noticed me convulsing, my mom ran downstairs to wake up the house and call an ambulance. When she came back, I was covered in blood. I had nearly bitten off my tongue.

(Months later, all you Downton Abbey fans will know that Lady Sybil died in childbirth from eclampsia. Who knew I was so chic and cutting edge? Most women have pre-eclampsia. I did not. I’ve told my story to several doctors, and they all say it was a weird presentation. No one could have predicted it. Yeah, we’re special.)

Anyway, we live a block from the hospital. It was the shortest ambulance ride in the history of our town. Within an hour, my husband was in scrubs, in a wheelchair situated at the foot of my unconscious body, while my doctor performed a C-section to save my and my daughter’s lives, pausing only to sew up my tongue so I wouldn’t choke on the blood.

My husband told me that little Kella—her name Irish for “warrior”—emerged from behind the surgical screens, cried and kicked the doctor before they whisked her to the NICU.

“Feisty little thing,” they all said approvingly. “She’s going to be fine.”

It would be a few days before they could say the same about me.

I remember waking up in a dark room, with a morphine drip and a nurse asked if I knew where I was. I must have said no.

“You are in the hospital. You had a seizure two days ago. You had a C-section. Your daughter is fine. She is in the NICU.”

The piece of my brain that was still functioning was like, “WHAT? OH MY GOD!!!!!”

But all I could muster was a moan, and I soon fell back to sleep.

I must have slept for days. I’d wake up from time to time and see my mom asleep in the recliner at night. My father-in-law sat there in the morning, and my mother-in-law took the afternoon shift. My husband sat with me, too, but I don’t remember it.

He told me later that I woke on one occasion, and he asked me if I was in pain. I looked him in the eyes and said, “Yes, I have blood coming out of my vagina,” or “Yeth, I haff bwood comin out o my vadyina.” Alarmed, he called the nurse.

That story makes me laugh.

For a time, my family worried that something terrible had happened to my brain. I wasn’t making any sense. I was barely responsive and when I tried to communicate, they couldn’t understand a word I was saying. The doctors assured them that I was on heavy duty meds, and my tongue injury had caused my sudden speech impediment.

Five days and a glorious shower later, I was me again. Well, a fragile, frightened me, but off all the anti-seizure drugs that had made me a shell of my former self.

And I was pissed! My doctor walked in my room and said, “Boy am I glad to see you again!”

He must have sensed by my dramatic scowl that I was feeling sorry for myself. I had missed my daughter’s birth. She was in the NICU, and would be for at least another month. My husband and I were both in wheelchairs at the moment. He was still unemployed and in terrible pain, and there was still that “curious tumor” to diagnose.

“Look,” my doc said, “You have every right to be mad about all this, but you should know, it might not seem so, but you are a lucky woman. 10% of women in your situation never wake up again. Things were very touch and go for you for a time. You are lucky to be alive, and your daughter won’t be in the NICU forever. She is going to be fine.”

I hadn’t realized how close to death I’d come. It must have been the post-partum hormones, but I suddenly felt euphoric.

“My God, WE WERE ALL ALIVE!!” I wanted to rejoice.

Funny how emotions are. Mine were everywhere.

Doctors’ Offices are Such a Drag!

100millionlogoUgh! Doctor’s offices. We worked our way up from the local doctor, to the teaching hospital two towns over, to the Chief Urologist at Columbia Medical School in New York.

This very prestigious surgeon was booked, of course, but the when the receptionist asked me my husband’s date of birth, she got very quiet. “That’s my brother’s birthday, too, she said. “Thirty-four years old. Don’t worry, I’ll get him in.

The summary translation from all the “doctorese” was this: my husband had one big, weird looking tumor that might be about 5 different types of cancer, and there were some funny looking lymph nodes, too. Yikes!

After each appointment, I’d come home, sit on the back porch and cry. Pregnancy hormones, young husband with cancer, slim savings account, baby on the way, living with in-laws (thankfully, really nice ones.) Not how I had envisioned my life. I felt like actor in a really bad play, kind of how I described the Valentine’s Day, a year and half ago when my father was found dead in his car along the highway. Heart attack.

We went with the surgeon at Columbia Presbyterian, a reassuring, kind man, who believed he could do a partial nephrectomy (remove only half the kidney), but he recommended doing open surgery, rather than laparoscopic, because some of those lymph nodes looked fishy. He thought we had about a 50/50 shot that they weren’t cancerous, and that the tumor, although a bit atypical, seemed likely to be a rather common type of kidney cancer with an excellent treatment. Of course, we wouldn’t know for sure until the pathologist had a look at the specimen.

Best of all, he said, “There is nothing I see here today that makes me think this is incurable.”

Everyone had a glass of champagne that night to celebrate, except pregnant little me—OK, puffy, huge me.

A month later, Friday the 13th, we all drove to Columbia Presbyterian at 4 am. We sat in a beautiful waiting room with a view of the New Jersey skyline. It was odd to feel frightened in such a posh setting.

I saw a man hugging a crying old woman. I’m about 99% certain he was my old publisher. I’d heard he’d been struggling with cancer. I figured anyone high up in the medical publishing world would go to the best docs. I felt reassured again that we were in a good place, but felt sorry to see him. (I didn’t say hi. Kind of awkward, right?)

They made an “X” on my husband’s left side, so they wouldn’t pull out his right kidney by mistake. We hugged him, went to the food court, and waited.

The surgeon came to find us in the waiting room four hours later. He looked upset.

The surgery was a technical success. It was a partial nephrectomy, 12 suspicious lymph nodes removed, some surrounding tissue, too. All the cancer out, “clean as a whistle.”

Then the kicker. The tumor was “curious.” They were sending it to Memorial Sloan Kettering to confirm, but it was probably a rare variety with little treatment options, or something deadly that would require more surgery.

This was not computing. Deadly, didn’t want deadly, and what do you mean, no treatment options? That sounded ridiculous, impossible. I couldn’t decide which one I wanted it to be.

Feeling brave, I said, “Doctor, you said that nothing you’d seen on the CT scan made you think this was incurable. After opening him up, would you say the same thing today?”

“Yes,” he said, gruffly, almost tersely. It felt like a lie.

“When I can I see him.”

“He’s in the ICU, vomiting. When he’s stabilized, you can go in.”

They called me over an hour later. My husband was hooked up to a hundred wires, and a nurse was by a computer monitor at his feet.

“What did the doctor say?” he asked weakly. (It broke my heart seeing him like this.)

I told him the surgery was a technical success.

“Really, he looked pissed about something when I saw him.”

Damn, even after being cut half open he was still sharp. I couldn’t bring myself to tell him about the ‘curious’ tumor, and the moment passed.

Machines started beeping. They told me to go, and I blew him a kiss goodbye, with what I hoped was a reassuring smile on my face.

The door slammed behind me. I hobbled down the hallway on swollen ankles, praying for his life. I never could have predicted in less than a week’s time that I would be the one who’d almost die.