The End

April 23, 2012 at 10:56 PM (Awareness, Cancer, Energy, Faith, Family, friends, Happy, Karma, kids, Real Life, Silver Lining, Uncategorized, Zen) (, , , , , , , , , , )

Wait, what? The End? What do you mean?

Well, Sarah wanted me to write this. So, I’m writing it.

A year ago, as Sarah was getting ready to say good-bye to our world as we know it, she was coming to terms with what she felt was the most likely afterlife. She had decided that she didn’t really believe in God or heaven. At least not in the way they talk about it in Church. We both used to be more comfortable with something that was closer to “the force” from Star Wars. An energy that bound everything together in a beautiful way.

A friend asked Sarah where she thought she might go after death. On April 27, 2011, Sarah responded with the following:

“I believe that life flows and ebbs and forms beings (trees, fish, dandelions, dung beetles) that get their energy from a giant pool of energy that surrounds everything (don’t ask me to get specific). When a new baby (lion cub, cockroach, seedling) is born, it takes its energy from the same pool, and when it dies, its energy returns to the pool and dissipates into a million(?) (billion?) pieces. I would prefer that our souls get to keep some of their individuality so I can come back and haunt everyone, visit the kids, go places I’d like to see. There are also a great number of people and pets that I need to see when I get there; I’ll be very disappointed if I can’t have lunch with my grandpa sometime! Maybe there’s a special package you can choose when you get there… if it’s merit-based, I certainly won’t win, but I can get a little extra-credit for making people laugh? Even if the jokes were raunchy and politically incorrect?”

Since Sarah died, she has convinced me that while the energy thing might be part of it, she also got the other part of her wish – maybe a bit of heaven on Earth.

Sarah’s nurse called the day after Sarah died, not knowing that she had passed, and asked how she was doing. When I told her she had died, she said, “I had a dream last night and Sarah had taken out her oxygen tube and wasn’t using it. I told her to put it back in so she could breath. But Sarah looked at me and said, Rose, I’m okay.”

We had a birthday party for Sarah in November. 85 people came to the house to remember her and have a nice evening meeting other friends and sharing wonderful stories. The evening was a success and I was happy to get in bed that night. At about 3 AM I woke after an experience that I cannot call a dream. Sarah was there with me before I woke. She was dressed in something resembling a Halloween costume (it was only a few days after Halloween and she loved to dress up). I said to her, “Thank you for coming.”  She looked at me and smiled. There was a very warm sensation between us. She never said anything, but she didn’t have to.

Over the Thanksgiving holiday, our boys, Sarah’s parents, her sister, our nephew and I went to St. John, USVI and took Sarah with us, too. We had a wonderful week there. On Friday morning, we each took a turn spreading her ashes on the beach and in the water at Francis Bay. A place that was dear to Sarah – where she had wanted to be. It was a somber occasion, but one of great relief to us all as well. Sarah was now “home.”

The boys and I returned to St. John for another week this March to spend some time there, just the three of us. We wanted to be close to Sarah and feel her with us. And we did. The weather was perfect. We spent lots of time on the beach, we sailed a few times, we met new friends. It was fantastic. Then on the way home, Sarah spoke to me in a way I could not have ever even made up.

It turns out that Harry Connick, Jr. and his family were on St. John the same week we were there. I didn’t know, but I’m sure Sarah was all over it. When we were leaving to fly back State side, we found out that Harry Connick and his family were on the same flight we were taking back to Newark.

Before I go on, if you have not read the story about Sarah meeting Harry Connick, Jr. on April 28, 2011, then you have to read that first. Otherwise, read on…

The boys and I boarded the plane knowing we had three separate seats around the plane. I had hopes of getting people to move so at least the boys could sit together, but with a full flight I was not feeling very good about it.

Sarah stepped in, and made it all come together.

Seat #1 was in row 7. A nice woman and her 6 year old daughter had an empty seat for my youngest. He was thrilled and very happy to have a playmate for the flight. Of course, my oldest said, “Dad, I want to sit with a kid, too!”

Seat #2 was in row 11. A nice woman and her son with the empty seat next to the window. #2 was happy. So was I. Stress relieved! Now back to my seat.

Seat #3 was in row 29. I arrive at my seat to find an empty row. Oh well. The boys are happy, no sense in dragging them back here. And, I’m sure someone will end up sitting here anyway. I sat and waited.

After the plane was almost full, a man ended up standing next to me. I looked up and it was Harry Connick, Jr. I played it cool, but was in complete shock. He and his younger daughter ended up sitting next to me for the flight.

Harry was really nice. We talked for maybe 15 minutes, but that was all I needed. I really just wanted to be able to thank him for what he had done (unknowingly) for Sarah. He was honored to hear the story and was very thankful.  When we got off the plane, he introduced me to his wife, Jill, and his older daughter as well. To be honest, they all were wonderful and asked about Sarah. It was a very nice experience.

Good Karma? Crazy coincidence? There are chance things that happen in our lives, but I firmly believe that this was Sarah, in a higher power, intervening and saying, “Ed, thank you. I’m doing great. And so are you and the boys.” Funny, now that I think of it, maybe she was also saying “thank you” to Harry at the same time. Two for the price of one. Nice work Sarah.

So, is this “The End”?

No!  The Carcinista is to be continued…

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A Run for Sarah

April 10, 2012 at 10:11 PM (Awareness, Cancer, Energy, Faith, Family, friends, Happy, Karma, kids, Mood, Real Life, Silver Lining, Uncategorized, Zen) (, , , , , , , , , , , , )

On Monday, April 16, 2012, I will run in the Boston Marathon as part of the Dana Farber Marathon Challenge team.

While this will be my third Boston, it will be the first without Sarah cheering me on from the sidelines. I last ran in 2009, and I remember running through Wellesley close to the half-way point, seeing her there with our boys. I yelled out as loud as I could, “I love you, Sarah.” I remember the pride and love I felt as I saw them there together. And I remember my tears, knowing we had a battle ahead of us that was not going to be easy.

As I trained throughout this winter, I’ve thought long and hard about Sarah. I’ve thought of things we used to talk about, or things we did together. The way she used to encourage me. There were so many wonderful things she did for us. An integral part of our family that made us whole.

I’ve also thought of her strength and how she just kept going, on and on with all the surgeries, chemotherapy and trials to see if we could find something that would work. She never gave up. And this is a lesson that I take to heart. She’s with me every day. Every time I go running I find a deep strength knowing she is there.

I made a short film about running and training for Boston over the winter. But, it’s really not about me. It’s about Sarah and all she did for our family. It’s about that amazing strength she gave us.

When I run on Monday, I will be running for Sarah. I will be running for our boys. I will be running for all our friends and family. I will be running for our friends who have died from cancer over the past year. I will be running for our friends who are still fighting and surviving.  And I will be running for a future without cancer. If you would like to support my run, please watch this short film. It’s only 3 minutes long. And if you can make a donation to the innovative research program at Dana Farber, please visit my donation page. 100% of funds raised go directly to cancer research programs.

Lastly, please share this with your friends. Let’s remember Sarah, the Carcinista, as we approach May 3rd.

With love,

Mr. Wonderful

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Transformation, turning points and clarity in life.

September 25, 2011 at 10:12 AM (after chemo, Age, Awareness, Energy, Family, friends, Karma, Real Life, Silver Lining, Treatment, Uncategorized, Zen) (, , , , , , , , , , , , )

Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month.  I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.

For all you Carcinista fans, I think you will enjoy this. See it here.

Let us know what you think!

Be well,

Mr. Wonderful

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Up In the Air

December 3, 2010 at 2:19 PM (Real Life, Research, Treatment, Uncategorized) (, , , , , , , , , , , , , )

With apologies to Mr. Clooney (and if he’d like to drop by, I’d be happy to deliver them in person), this week has been the definition of “up in the air”. I’ve been to The Cancer Factory three times looking for a plan, and each visit has given a teensy glimpse of what my upcoming schedule could be, but also another question or two that need answering before any decisions can be made.

So if there’s any truth to that “chronic-stress-causes-cancer” thing, I’m fooked.

Today’s downtown journey revealed another medical truth: no matter how much iron you consume the night before, you cannot pass a failing hemoglobin test. (Although if you’re looking for an excuse to eat grilled grass-fed buffalo rib-eye and sautéed spinach with pancetta, garlic and shallots, which I HIGHLY recommend, I won’t blow your cover.)

Wednesday I met with the urologist, who aside from being a nice guy, said he could fit me into his schedule for my left stent any time, all I had to do was figure out when the Phase I gang wanted me to have it done and call his nurse to book it. But I couldn’t get an answer from the Phase I gang until my hemoglobin was re-tested; 8.9 was not the 9.0 the “sponsor” (Pfizer) needs it to be for me to start the trial.

Yesterday, despite the fact that I hadn’t called to schedule it, I got messages during my nap from: the urologist’s office, the anesthesiologist’s office, and the admissions department at New England Baptist Hospital (where the procedure would be done) all telling me that I was to arrive this morning at 10:30 for my stent insertion. So I had to scramble and check with Phase I – no, they wanted me to get a transfusion (for my pitiful hemoglobin) before I had the stent placed, and I couldn’t start the trial within two weeks of a transfusion, so “no-go” with the stent procedure for today.

TODAY, I had a re-check of the hemoglobin, in hopes that my yoga, steak and spinach had helped it rebound from chemo, but no luck. Still 8.9. SCRAMBLE again to find Mr. W (and get him to answer his phone) to pick up the boys from school this afternoon, so I can get a two-hour transfusion (starting at 3:00 PM, yaaaaaawn), so I can start the trial two weeks from Monday. Which, in case no one has noticed, is the 21st of December. I’m sure I’ll have TONS of time that week to be down here three days in a row.

What I still don’t know is when I’ll be having my stent placed, but now that I’ll have a transfusion on board, I hope they can fit me in next week. But not too early, so I don’t miss Mr. W’s company Christmas Party, the only one (pathetic!) we’re scheduled for this month. And not Wednesday, ’cause Mr. W’s in an off-site meeting all day. Guess it’ll be Thursday or Friday… maybe?

It’s still up in the air.

Clooney? On second thought, I’ll meet you in Como.

Hopefully Elisabetta will be out of town.

Photo credit here.

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Speak Your Piece

November 2, 2010 at 11:58 AM (Uncategorized)

I’m sure your inbox has been as crowded as mine, over the past six weeks, with emails from senators, the veep, even Barry O. himself, exhorting you to cast your vote this way or that, choose this candidate over that one, save our country from certain destruction at the hands of [insert opposing political party name here].

So I’ll keep this brief: make sure you vote today, and not just for the party you like best but for the candidates who will do the best job. And I don’t need to remind you of the importance of thinking carefully about the recent health-care legislation and its potential benefits for the illin’est of us, in terms of lifetime healthcare limits, pre-existing conditions, and coverage for the young adults under their parents’ policies.

Okay, I’ll get off the soapbox now. The most important point to remember is: if you don’t vote, you can’t bitch about them later.

Photo courtesy.

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Health-Care Legislation: Good For Us?

March 22, 2010 at 12:01 PM (Uncategorized) (, , , , , , , , , )

I’m not a political junkie. I feel like the current slate of crap I have to worry about (chemo, dinner, second-grade projects, emptying pockets before laundering, my backhand, spring fashion forecasts) is full and engrossing enough that I really don’t need anything else in my brain. But I have kept an ear to the ground over the health-care debate, and I am very glad it’s over.

Except it’s not. (And let me just preface the following by saying that although I’m not an ignoramus, I do NOT have all the details of the plan neatly laid out in a flow-chart in front of me.) What I’m seeing is like a little plaintiff winning a big lawsuit against a major corporation: yes, the gavel went down, but the money is soooooo far away. States are filing suit; Republicans are heralding the end of civilization as we know it; Democrats are patting themselves on the back; retirees are sharpening their voting pencils; patients who need treatment NOW are still four years from a doctor’s appointment. Will more uninsured Americans get health-care coverage? Probably. Will the overall balance of people-getting-what-they-need-at-reasonable-prices swing into the positive? No one knows.

I love that insurance companies don’t get free rein to cancel coverage or raise rates the way they used to. But upon whose shoulders will they lay the cost of adding all the people they denied in the past? I’m guessing we, the payers. I have been quietly grateful for my outstanding insurance coverage over the past four years, and the fact that we’ve been able to see the doctors we want and get the treatments I’ve needed with only a couple of surmountable hiccups. Now I’m more than a little curious how that will change.

For those of you who had nothing, and need health care desperately, I share your excitement. I know that access to care is a huge problem for young cancer patients, and it’s beyond not-fair. I agree that some reform was sorely needed and I’m so glad we got some. I’m just  going to hold back on my ticker tape scattering until more of the facts are in.

Are you celebrating today?

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Starstruck

March 7, 2010 at 4:10 PM (Uncategorized) (, )

PLEASE NOTE COMMENT #2 ON THE PREVIOUS POST BELOW!

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Feelin’ Funky

February 22, 2010 at 5:10 PM (Uncategorized) (, , , , , , , , , )

I kinda spent the weekend moping. Not off-by-myself, staring-at-the-TV, gorging-on-chips moping, but quiet reading, contemplation, unusual lack of exercise. I even vacuumed.

I don’t want to say that the results of the scan have gotten me depressed, but they threw me for a little loop, more than I would have expected. I guess I’ve been feeling so fine on the Avastin that I started to get a little cocky, and as anyone can tell you, that’s a sure sign of a fall waiting to happen. It’s not as if I’d stopped worrying about it (“Just say it, wimp, ‘the cancer'”), MY cancer, but it had receded to a place where I was actually thinking about learning about a new job, going on a kayaking adventure trip and feeling strong, planning summer trips and activities and not worrying about exhaustion or side effects.

Now, it’s not as if I’m going to keel over next week. The tumors are in the one- to three-millimeter range, and won’t impact my lung function for another six months or so even if we do nothing about them. And I still have lots of options for treating them. But as I was making pizza dough on Saturday, it hit me: some clinical-trial med they put me on might have hideous side effects. This might be the best I feel for a while. And before I could stop myself I took a little march down memory lane: summer 2006, unable to climb stairs without a break; nannies; supporters delivering meals. Mom trekking up here ten out of every 20 days to help run my household. Bald, rotund, shredded.

I feel like Mike Myers on SNL when he played that little hyperactive boy Phillip tied with a leash to the jungle gym: no matter how I try to get away from the damn cancer, eat right and exercise my feet off and do yoga and live in the moment and play with my kids and take tennis lessons and plan kayaking trips and chairing committees and all of it, I’m still tied to this effing jungle gym. 

At least I look better than Nicole Kidman’s duck-lips.

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Two Steps Forward, Three Steps Back

February 19, 2010 at 11:08 AM (Uncategorized) (, , , , , , , , , , )

Have you ever had that dream where you’re running, something’s chasing you and you’re running as fast as you can, but no matter how fast you move your legs you don’t go anywhere? Yeah.

Got the results of the CT yesterday. (You see where this is going, don’t you.) The Avastin is successfully holding down the pelvic tumors – they’re even smaller than they were in November. The lungs, however, don’t seem to be getting the message. Old (tiny, glacially progressing) nodules have grown a millimeter or two; new subcentimeter nodules are appearing. No lymph node increases, nothing in the abdomen or bones. But those lung guys, off by themselves, clearly on their own program, making trouble.

I’m working on my optimism, but today it feels like my balloon is a little deflated. I know all the things I’m doing to take care of myself, exercise, diet, good attitude, and all the things my medical team are doing to take care of me, scans, great medicines, oodles of treatment options, are the best in the business. Seems the glacier’s gonna carve that canyon anyway.

The Avastin will continue; I’m meeting March 1 with the head of the clinical trial department to see if there are any open studies looking for a guinea pig who’s totally healthy except for the damn cancer. Let’s hope the nasty make-your-hair-fall-out-again studies are all full.

One thing’s for sure, I’m going shopping with my usual post-tax-return IRA deposit this year.

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Kids Say the Darndest Things, Vol. I

February 9, 2010 at 4:11 PM (Energy, Family, kids, Sleep, Uncategorized) (, , )

I was heading off for my daily kip when I realized that I had put the blanket and comforter from my bed into the wash, and they weren’t finished yet. Never one to let a minor inconvenience come between me and forty winks, I stopped by the playroom to ask my five-year-old if he would mind if Mommy borrowed his comforter to wrap up in for her Quiet Time.

He looked up at me with his big brown eyes, and in the sweetest, most concerned voice, asked, “Will it get cancer on it?”

You can’t make this stuff up.

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