Friday, November 26, 2010

Scandalous

Being an overachiever and well steeled, I thought I could make it through the usual pitfalls—holidays, change of seasons, and Toy Story 3—without crazy tears. I did not. I am a common bereavement statistic. At 2am on the eve of Thanksgiving, hot and messy, I was searching for a friendly voice to be awake. For the first time, Facebook let me down. Friends online? Zero.

But joy and sadness can coexist. I have to admit that my first Thanksgiving without Ron was one of the nicest ever. Is that scandalous? It goes without saying that our first choice would have been to spend the day with Ron, but since that wasn’t in the cards for us, I decided to abort plans to stay home alone with my memories [yes; that was indeed my first plan] and joined good friends and neighbors nearby. It was virtually impossible to feel sad surrounded by such love, generosity, humor, and good cheer. The food was delicious, the settings beautiful. One of the gifts Ron left me, in witnessing all that he suffered, is to cherish goodness when you experience it, and to drink it up for those days when your glass may be less than full. It is an amazing privilege to be alive. Each joy feels that much more exquisite, and this Thanksgiving day was so wonderfully lovely.

I have long thought that my friends were particularly sparkly and kind, but I had no idea how much their gifts would lift and sustain me over my darkest days. You all have made it impossible to feel unlucky.

I am thankful for knowing what love looks like and where my home is. The value of joy and people who can make me laugh. A well-crafted cookie. Warm, familiar faces around town. A visit from an old friend. Or a new friend. People who love well. A community of widows who—having experienced death so closely—feel the importance of living fully. And of course, my family, Mai and Tal, and the man I will always see in them.

Happy Thanksgiving.

Thursday, August 19, 2010

Four months

I couldn't fall asleep last night until 5am, which is late, even for little widow me. I stayed up going through all of the thousands of new emails (mostly junk) that have come to Ron's address over the last month, and reading some of his archived sent mail. I cried, missing the familiar tone of his writing. I tossed. I turned. I cried some more, for no apparent reason. I ate chocolate--long after I had brushed my teeth.

Because I've done my requisite widows' lit reading, I was not surprised that our journey in grieving and healing would be non-linear. We are coping well, and then we are not. We are feeling capable and hopeful, and then... so not. It's happened before on the anniversaries of Ron's passing that I've felt the sadness first, and then remembered the date.

This past month, the kids have delighted me with their resilience and strength--their ability to remember and celebrate their father, their compassion for others, and their instinct to live joyfully. On Ron's birthday, we toasted him with strawberry sprinkle donuts for breakfast, rode horses, and capped the day at the Pond. A good day.

I have been initiating efforts that seem to me like a measure of moving forward: sorting through Ron's drawers, giving away clothes, purging furniture, going to the office, and venturing out for fun without the kids. Most of the time it feels natural, but occasionally it feels like my own spin job.

What I miss most these days is emotional honesty. There was no need to edit with Ron. If something was on my mind, I could always share it with him. If I felt the desire to smooch him silly standing at the sink brushing his teeth, I would--shamelessly. If I was annoyed by something big or small, I'd get it off my chest. If I felt desperately needy, fearful, jealous, or sad, I could lay it bare to him and find comfort. There was no need to temper my emotions, good or bad, so emotional honesty was easy.

Living honestly as a widow is challenging. I'm constantly working to be the best version of myself around the kids, and--let's be clear--I'm not naturally that good. I'm stuffing emotions down my throat so I can pass for normal in public, and smiling when I check out at the grocery store. I temper my emotions for friends because they are so amazing and generous and the last time I sobbed about being lonely on the phone, one hopped in the car the next morning and drove four hours to visit, bless his heart. And when he left? I worked hard not to cry like a baby. Gestures of kindness and pleasure feel so deeply satisfying that I sometimes feel aware of suppressing my reaction because it just wouldn't be appropriate. Family friends took us on a wonderful boating adventure, and I was so moved to feel the wind on my face. If I had really let myself go, those few silent tears rolling down my cheek could have quickly evolved into the ugly cry. It's easier on a blog, but in real life, truly, you don't want honesty from me.

And I'm not on this roller coaster ride alone. I found dear little Mai hiding under the sheets this week, sobbing in the middle of the afternoon. Said she missed Ron. I did, too. We had a good cry and cuddle, and then moved on.

In case you think this post is all doom and despair, it is not: I've lost another 5 lbs. Unlike the caregivers' diet, the widows' diet is effective. It's like the heroin diet--no sleep and no food--but without the heroin, which makes it eminently more affordable on a widow's budget. I'm thinking of adding yoga once the kids start school.

Signing off with honesty made easy online: I love you. Thank you for reading. And caring.

Sunday, August 8, 2010

Your gift

Ron died at home in bed on a Monday, just before midnight. I held him until morning. The funeral home took him away Tuesday. I have no memory of Wednesday. Thursday morning, we escorted Ron from the funeral home to the crematorium.

Against the advice of trusted friends and family, I decided to take the kids. I hardly felt sane those first few days, but I felt strongly that including Mai and Tal was the right thing for us. Plus, I gave them the choice, and they wanted to go.

Ron and I had matching Life is Good shirts with “Honey” printed on the front. Never a suit-and-tie man, I dressed him in his Honey shirt so everyone who handled him at the funeral home would know he was beloved. Mai tucked a little bear with hearts under his chin “so he [had] something to cuddle” on the next leg of his journey. The three of us pushed his coffin from the parlor to the hearse.

For years, Ron and I had a running joke about how I would one day wheel him around in his old age, pureeing all his favorite meals so he could enjoy them through a straw. But we simply weren’t imaginative enough to take the sketch any further, and never had I anticipated pushing the coffin that would eventually replace the wheelchair.

Our minivan followed the hearse for nearly an hour. I think we played “I’m thinking of an animal...” in the car. 

At the Linwood Crematorium, the kids and I helped move their father from the hearse to the retort. Mai and Tal pushed the button to start the flames. They understood that the process would take the water out of their father’s body and leave us with ashes and bone fragments called “cremains.” I knew there would be questions about how Daddy could fit into a smallish box, so I used the analogy of a grape becoming a raisin. 

In life, it was always an event when Dada came home. Ron would call as he was leaving his office, and during the warm summer months just before the cancer returned, the three of us would wait in front of the house, riding bikes, climbing trees, or doodling on the bluestone. When Ron’s car pulled into the driveway, the kids would jump up and down cheering, waving ferociously and throwing kisses. It was a rock star’s welcome. 

So when we returned to Linwood that afternoon to pick up Ron’s cremains, the kids were happy. We were excited to bring him home one final time. We instinctively hugged the box, and said that it felt warm, just like Daddy. Before we buckled back up in the car, Mai and Tal eagerly asked to open the box. My stomach hollowed, but I didn't want my hesitation to dampen their fearlessness, so I smiled and enthused, “Let’s do it!” There in the backseat, we pulled away all the layers and fingered the still-warm ash and bone fragments through the clear plastic bag. Daddy.

Mai insisted on holding him on her lap, and as much as I wanted to cradle him myself, I relented. After nearly 14 years together and 18 months of illness, bringing Ron home to rest was the last physical thing I could do for him. It was a great privilege.

A few days later, Mai told me she showed Ron's cremains to a friend. Alone in the bedroom, those fearless little girls removed the outer box--much heavier than one might expect--shook out the interior box, and opened it to reveal the clear plastic bag. Mai explained the cremation process, beginning with the removal of the water and ending with the raisin.

Tal is equally at ease with the cremains and the story line. He's never asked if Daddy is coming back, and if you ask him where his father is, he'll tell you in his halting toddler voice, "He is in our heart."

One of the challenges of parenting alone is trusting an inner voice. Ron and I had a history of choosing less popular paths, and together we always offered the nod of agreement and reassurance to whatever kooky idea the other proposed. Now, I have to listen for that voice on my own, and have faith in what I know to be our shared instinct.

Mai and Tal survived. I felt triumphant.

I couldn’t articulate why at the time, but I felt absolutely that the kids needed to be present and involved in all parts of their father's life and death. Then I found this, which said it beautifully:

"What you resist persists, but what you befriend, you transcend."

Tomorrow is Ron’s birthday. 

Sweetie, my gift to you is to raise our children fearlessly; to imbue them with enough love, resilience, and strength to embrace life’s highs and lows and feel equal to anything. Also, a baked stuffed lobster—but I’ll have to enjoy it for you.

Happy birthday, Love.

Sunday, August 1, 2010

Will it end in tears?



I've always been drawn to text-driven art, and my friend had this wonderful piece hanging in his New York apartment. It reads: Will it end in tears?

Two years ago, I would have answered a resounding NO. I would have ignored the clich├ęs about all good things coming to an end and sung along to "only the good die young" without fear.

Ten years ago, I stood with Ron overlooking the water and recited--enthusiastically--"til death do us part." We said it smilingly then, and only understood it to mean that we'd be together forever. How could we comprehend that one of us would die and the other would grieve?

Beneath the Brooklyn Bridge, I saw a newly wedded couple posing for portraits, their shiny faces full of promise and bliss.

Will it end in tears? I sincerely hope so. I hope you've loved deeply and wildly and recklessly enough to howl at the moon.

Tuesday, July 20, 2010

Three months

The first week after Ron died, Mai asserted that there were some good things and some bad things about Daddy dying. I had to take the bait. “What?”

“Well, the bad things are that I’m really sad that I’ll never get to spend time with him again. But the good things are that he won’t have to take shots anymore, and he won’t have to sleep at the hospital anymore, and they won’t have to take blood anymore, and...” the list went on and on, as if the sheer quantity of the good things could compensate for the enormous gaping hole left by the one bad thing.

Mai has become a very careful listener of song lyrics. The other day, James Taylor’s version of “Only One” was playing on the iPod and Mai remarked, “Mommy, I really like this song because it makes me feel like I can still have a lot of love with just one parent.” Mai consistently digs deep to come up with the most positive spin she can muster surrounding our great loss. The actual refrain from the song is:

“You are my only one
You are my only one
Don’t be leaving me now
Now you’re my only one.”

Mai also commented on the lyrics of Les Miserables’ “I Dreamed a Dream” which I have been playing as part of my malaise mix. She opined that the words aren’t really happy. What’s not cheery about:

“I had a dream that life would be
So different from this Hell I’m living
So different now from what it seemed
Now life has killed the dream I dreamed.”

Joking aside, three months later, I think our family is doing OK. We all still have our very sad moments, but we also have a lot of joy and love, which is absolutely what Ron would want. 

I’m stealing a George Bernard Shaw quote I found on another widow’s blog: “Life does not cease to be funny when people die any more than it ceases to be serious when people laugh.”

Tal, at age two, has always understood the permanence of his father’s death, but doesn’t yet realize our situation is not universal. During a playdate, his friend was crying and Tal threw in his two cents: “I think he misses his Dada.” In the early weeks after Ron’s passing, the structures Tal built out of his magnetic tiles were mostly hospitals. Now, they’re more often horse stables or dog houses. It’s progress. Mostly, Tal is still his exuberant self. 

In that way, Mai and Tal have saved me. It’s so clear that there’s just one way for us to play the hand we’ve been dealt, and that’s to celebrate life and to live as beautifully as possible; to surround ourselves with joy and great love, because that’s the way we lived with Ron and he would be so heartbroken to see the cancer take that away, too. 

So we are enormously thankful for those of you who are committed to joy, and who have the capacity to live it. You are the beautiful souls who know that peace and happiness are choices, and that laughter is as life sustaining as air and water. 

Tuesday, June 1, 2010

Slideshow


Our dear friend Jim created this slideshow for Ron.
It makes me happy.

Click here to view.

Wednesday, April 21, 2010

Too soon

My sweet Ron took his last breaths late Monday night. We are beginning to plan a memorial celebration in his honor at our home this Saturday.

Sunday, April 4, 2010

Party for Ron

Ron's cancer has spread to his liver and the disease progression is rapid. We know it's no notice (and Easter!) but we hope you can join us at our home this afternoon between 4:00-6:00pm. Ron would love to see friends and family while he's home. We'll have dessert out in the yard and games and tennis rackets for the kids. Just bring yourselves. It should be a beautiful day.

Much love,
Ron, Ha, Mai, and Tal

Sunday, March 7, 2010

long, overdue update

My sincerest apologies for not posting since January. A lot has happened since then, which I will explain, but I think I hit a wall where it just became too much and too long to deal with all that was being thrown at me (and us). As I explained in my last post, this process just always continues. Everyday brings a new issue, new information, progress, failure, joy and sadness. It is difficult to explain, and I never would have understood it myself a couple of years ago, but it is physically and emotionally exhausting and sometimes feels like it will never end. To coin a phrase from a Broadway show years ago (I am really showing my age here), "Stop The World, I Want To Get Off" is sometimes how I have felt over the past few months. The news, the process, the steps to get from A to B, sometimes feel overwhelming and so I think I just shut down a bit and grew tired of talking about it all of the time, which is why I stopped writing and took a break.

All that being said, this blog has been an important part of this journey for Ha and me, and I cannot express how much I appreciate all of you who take the time to read it and the support you have all provided. It is also an important piece that I feel privileged to pass on to Mai and Tal. Regardless of what happens, whether I live 1 year or 50 years, to have a journal of their Dad to read from years ago, I hope will be something they can find meaning in.

So... my medical update. In January, as I was approaching my 100 day marker, I was not feeling well. Lots of stomach pain, fatigue etc. It persisted for some time and coupled with the clotting issues I was having, my doctors decided it might be best to get a ct-scan to see if my disease might be returning. What they discovered is that all of the disease that I had prior to my transplant was gone (good), however, there was new growth that was already occurring and it was in multiple locations (definitely bad). I believe my doctors were as surprised as I was and they were quite candid with me, expressing that this was not the result they were expecting nor hoping for. It appears that the radiation and chemo prior to the transplant did it's job and eliminated what I had leading into the transplant, but my disease relapsed very quickly and did not allow enough time for my new immune system to strengthen and fight any new disease. The concept of the transplant is to eliminate and then build a new immune system that will fight back against any new growth, but my disease returned in less than 90 days. My immune system was about as strong as a infant's, and not developed enough to do its job.

So, the plan they have developed is to put me back on more chemo cycles to reduce the disease, essentially buy some time, and allow my new immune system more time to strengthen. They are theorizing that if they can keep me stable for many months, that eventually my new system will gain enough strength to begin doing what it is supposed to be doing...fighting the disease. As of today, I have undergone 2 rounds of EPOCH chemo, the same chemo I had prior to the transplant and will begin my third cycle on Thursday 3/11. If EPOCH is found to be ineffective, there are two other "cocktails" they would alternatively try. So far, the results have been positive. They ran a ct-scan last week and it appears that the largest lymph nodes have reduced in size, the smaller (but still enlarged) nodes are stable, and there is no new growth. The side effects have been considerably worse this time around though. They had explained that because my immune system was not as strong as prior to my transplant, I might not tolerate chemo as well, and that proved to be the understatement of the year. I now realize how lucky I was previously, experiencing minimal side effects throughout chemo and the transplant itself. The past few weeks have been filled with fevers, significant pain, blood transfusions, multiple day hospital stays to stabilize my blood counts and eliminate fevers and just general misery.

It has been hard on me, but equally hard on Ha, Mai & Tal. Ha has had way too much thrown on her plate, but continues to keep her strength and kindness, caring for me, Mai and Tal, managing our household, paying bills and trying to keep a sense of normalcy in our home. Mai and Tal are getting old enough to understand more of what is going on, and at times it is heartbreaking. Having them pull my legs as they say they do not want me to go back to the hospital, is sometimes almost too much to bear. Mai now understands that if my fever spikes above a certain number, I am required to check back in to MGH, so she is constantly offering to bring me drinks and food to "help me get better" so I can stay home. Tal is her constant side-kick, mimicking Mai's every move and his favorite activity is to bring me Cheerios in bed when I am napping (although he tends to eat most of them himself). They are so innocent and sweet and none of them (Ha included) deserve any of this.

I am doing ok but realizing the battle is getting more complex and more difficult with each new day. This has been extremely difficult since day one, but as it continues to progress, it also becomes more frightening. When you feel sick, you are constantly reminded of your plight, which is a whole other mental challenge to fight. I am a "glass half full" kind of guy and always have been, so as long as we are seeing progress, I remain hopeful. But, I do recognize the difference of my current situation as compared to 6 months ago. I have now relapsed twice, my disease is a huge question mark as far as treatment and success rates, and the disease is no longer localized. On the other side, I am working with about the most capable team of doctors you could find on this planet, we are seeing some progress, and I am one tough, determined guy who has three beautiful treasures at home that I would do absolutely anything for. So the battle continues, each day is a gift, and we will continue to gain strength from the love and support we receive from all of you.

Ron

Thursday, January 14, 2010

Day 72

I am getting closer and closer to that 100 day milestone, and we have our fingers and toes crossed that all continues to go well for me and for our whole family. One of the most common topics discussed lately has been our battle with not just the physical side-effects, but also the psychological side-effects of this very long process. It is hard to explain, but the stakes are obviously so high for all of us, and the waiting has become an extreme challenge. Additionally, after the 100 day marker, there are still going to be a number of risks and dangers that we will need to deal with, so some days it just feels like this process will never end. But we push forward and take every day as a blessing, hoping that these days string along and eventually join together into 1 year, then 5 years, and then 20 years or more. But it is difficult, because Ha and I are generally not very patient about anything!

We had some scares last week, as there was some concern that I had more blood clots, which landed us an evening trip down to the MGH emergency room. But everything turned out to be clear and it was an apparent false alarm. The emergency room was quite an experience. Hundreds of people all looking for various forms of help. Some young, some old... the emergency room does not discriminate and it was fascinating to see people from all walks of life traveling through there. By the time we left at about 11pm, they were so crowded, there were stretchers lining the hallways with patients waiting, and there was simply no place to put them. It was quite a scene and we were glad to go home.

Mai and Tal are fully back into their school routine and really enjoying all of their activities. They especially love Tuesdays and Thursdays when they both go together and this past Thursday, they had "Animal Adventure" come to their school. They were able to meet and touch a number of animals, and they claim they touched a tarantula, which I was (and still am) in disbelief about. Brave kids... braver than their own Dad! Ha has taken a tiny bit of time to try some sewing projects, although she is still swamped managing our household, so the more serious sewing projects will probably come when I am feeling better and doing all that laundry, dishwashing and grocery shopping that I am going to owe her!

On a final note, my thoughts today are with the victims in Haiti. The earthquake was devastating and I hope they are able to receive aid quick enough to save the many hundreds of thousands who are affected.

Take care,

Ron

Friday, January 1, 2010

Happy New Year

It has been a busy couple of weeks and I did not realize how long it has been since I provided my last update. Generally, things have been going well and I continue to feel healthy on most days. Channukah, Christmas, Mai's birthday and then New Years all crowded into a 2 week period always makes the end of December a very busy time for us, but all of the activity has been a nice diversion. We lit the candles each night for Channukah, exchanged gifts on Christmas, and celebrated Mai's birthday and rang in the New Year together yesterday, thankful to be home and celebrating together as a family.

Tal's fascination with horses has continued and he now has many more plastic and stuffed horses to play with (thanks to the holidays), and our beautiful daughter Mai is 5 years old (going on 10), and so excited to be all grown up. Ha continues to keep it all together, juggling a huge list of "stuff" (we always wonder why we have so much stuff to manage) and I continue to offer my driving skills and waiting skills when I can, looking forward to the days when I can actually start to do things around here.

On my last weekly checkup, they found two blood clots in my leg, which does occasionally occur after the treatment I have endured. So, I am on bed rest until Sunday and back to giving myself 2 shots per day (blood thinner) to reduce the clots and stop more from forming. Otherwise, my last two checkups have been fairly uneventful.... blood counts and liver enzymes have been stable, and it appears that the graft vs host disease is greatly reduced for now. I am at day 59 today and Dr. Chen confirmed that if all continues to go well, I am on track for release of many of my restrictions at day 100... very welcome news for me, as my latest excitement has been keeping our bird feeders filled.

Wishing you a very happy New Year and all the best for 2010.

Ron