Social Media and Bikur Cholim

CMrs. R. (as I’ll call her) posted on a Facebook Group I read called the Tokyo Mothers Group that she was just diagnosed with lymphoma and asked if anyone knew anything about it. In fact, it’s a little more complex than that: my friend Kacie, whose daughter is just six years old, was reading the board and mentioned me in a comment to make sure I’d see it – I don’t often read that board anymore since my kids are twelve and fifteen years old, and the group most often has playgroup and play date recommendations and breast feeding support on it. Feeling a bit of social media pressure, I responded vaguely to the post – at first. “I did the treatment and now I’m fine!” She then took that bull by the proverbial horns, first friending me on Facebook, then sending me a private message asking all kinds of questions about how I’m feeling now, how my treatment went, and where I took the treatment. She and her husband had only been in Tokyo for two years and she needed advice. She wanted to talk. I didn’t answer her fully right away; I was struggling a bit inside. I’ve never spoken with another lymphoma patient; I’ve shied away from that blunt of a reality check. I just told her over social media that I had returned to the U.S. for treatment and asked her for the name of the hospital where she was being treated. And then I decided to just drop the façade and go see her. My husband was supportive immediately; sometimes I get these ideas in my head and I can’t let go – he senses when that’s happening and doesn’t fuss at me. At the same time, I could tell he was concerned – for me, there’s a lot of emotion tied up in lymphoma. I did not want to re-live the experience. I often tried to pretend it never happened to me. On the other hand, there was something nagging at me – if I could ease her suffering just a little, tiny bit, I probably should. Judaism teaches that the mitzvah (literally translated as commandment – but often meaning good deed) of Bikur Cholim – Visiting the sick – is one of the most important and meaningful of all of the 613 mitzvot. There are rules regulating how often (as often as possible for short periods) and when (after three days of suffering) and the common Jewish wisdom is that a visit from a caring friend or relative alleviates one sixtieth of a person’s suffering, and for that reason, it’s an important thing to do for someone. I had never met Mrs. R. in my life, but when I walked into her hospital room, I couldn’t help but hug her. She’s a beautiful woman with rich, dark hair and a shiny, wide smile. She was unpretentious and open, hankering for a talk – hungry to be understood and understand what was happening. She kept thanking me for coming, as did her brother, who had flown in from London to be with the woman who was clearly, judging from his protective attitude, his little sister. The magnitude of her youth hit me slowly, like a seeing a glass fall off a table in slow motion. Her daughter is only two and a half. We swapped diagnosis stories and she asked me if I thought she should go back to India, where she is from, to take treatment. I struggled with answering her because her type of lymphoma is not the same as mine was, and I have no idea if medical treatment is better in Mumbai or Tokyo; I just know that being treated for a serious illness in one’s native language is a huge comfort. In the end, the details of the situation didn’t really matter anyway. I stayed with her only an hour that day, just connecting with her, reaching out to her, letting her know that she is not alone. I swallowed the bile of my own illness, so recently passed, and offered the olive branch of hope to her, which she grasped with both hands. Leaving her was hard. I wanted to stay, to hug her and tell her she’d be okay no matter what happened really. I had my own babies to get back to. Even when I returned the next day, it was for just a few minutes, to bring her my own book on hope and strength before returning to my regularly scheduled life. She says I helped her decide to return to India to be near her family, where she can be with her daughter all the time. Her husband is going with her, able to work from the Mubai office of his company instead of the Tokyo office, to which he had been transferred from India anyway. I don’t know precisely what I did or said, but she seemed at peace with the decision, with the process ahead of her. When we parted, it was with pressed hands and promises to see each other again, be it in Tokyo, in India or even someday in the U.S. I’m sure we will, too. It might not be so soon, but I will see Mrs. R. again somewhere, someday. What began with a social media posting became the physical fulfillment of a mitzvah, and will now return to the world of the virtual, as I’m sure we will be in touch over some type of technology or social media. She might think that I did something for her, and perhaps I did, but what she did for me, giving me the opportunity to fulfil a beloved mitzvah and come to terms with sharing my story both in person and over social media, with those similarly afflicted, was the real gift. Godspeed, Mrs. R.  I am waiting to meet you again.

The Grace of a Moment

CLately, instead of thinking about big things, I’ve been struck by little ones.  Here are a few examples:

Today Marc and I were driving to Bailey’s school to meet with his counselor.  There’s nothing wrong but this is our first child and we don’t know how to guide him, what he’s capable of doing, and what his options are, ergo, we asked for help.  I was sitting there in the car when it struck me.  It was this feeling of, for lack of a better word, shininess.  The sun was peeking out and burning off the morning fog; we were in one of the most exciting cities in the world; we were about to talk about our young teenager who, as of today, is still one of the “good” kids; and we were together doing all that.  The immediacy of it made me catch my breath a little with the sheer gratitude I felt.

The same thing happened last week.  Marc, the kids and I were sitting together at the dinner table doing nothing special except eating some yummy food when one of the kids brought up the idea of patents and patent protection (Marc is a patent attorney).  A very lively and interesting discussion ensued with the kids asking some very pertinent questions.  While Marc was answering one of these questions, that shiny feeling struck me.  I just sat back for a moment and watched the three of them interact, soaking it in and inking the picture of it in my mind more fully.

Over the weekend, we were out to dinner with some close friends at a wonderful Mexican restaurant in the trendy Marunouchi district of Tokyo. It was my first time venturing out to dinner and taking part in any sort of night life since being back. I had to stop and take a breath from the wonderful realization that struck me – I was sitting there in that hopping joint of a place, having a fantastic mojito, and surrounded by people who care deeply about me. How lucky is that?? (It really was a grand mojito, by the way)

I can list twenty-odd more little tiny events like that over the past week or ten days that have struck me deeply.  They were not moments of deep and lasting meaning.  On the contrary, they were moments of near-meaninglessness.  But they were moments. And they were my moments – little things that were important to me and maybe nobody else.  Two or so weeks ago I was so overwhelmed with the task of getting back to my life that I couldn’t even see these snippets. Progress.

Clearly my gratitude-o-meter is running overtime as I start to feel more and more normal – and get more and more in sync with my general life and the lives of the people around me.

I don’t know how long I’ll feel this stroke of grace, but I do hope it lasts a while.

Clean Bill of Health

CBring out the champagne! Dr. Siegel officially pronounced me to be cancer-free as of last week. There is a lot for which to be thankful this holiday season, and I’m looking forward to starting 2014 with a clean bill of health.

As I celebrate however, I have a lot on my mind.

I have spent the past five months with a singular identity: Cancer Patient. By necessity, I have been dependent on others. But it’s not mere dependency – I haven’t even had to make my own decisions.  Someone else has decided what I eat and where I go, how I get places and my schedule. I have pretty much decided what to wear by myself, but that’s about it.  I fell into the Cancer Patient identity pretty easily – I was too sick to protest.  When I think back on those terrible summer days, I am grateful for the people who took over my life and functions so I could concentrate on simply breathing on some days. Now that I feel well, and the label is gone, I have to re-learn how to be a fully functioning, forty-something adult who is responsible for herself. It feels a bit daunting, though when I think about it rationally, I know I’ll be fine and back to normal in a pretty short time. I do, however, think it will be a new normal. Cancer has changed me in ways I can’t yet imagine as I work to get back to myself. I really hope I will be able to keep the best of the lessons I’ve learned and get the bad stuff out of my head.

The love and support I’ve received in the past five months is overwhelming in its depth and breadth. My friends have taken me into their hearts and their homes in fuller and more meaningful ways than before. My relationships are changed in wonderful, beautiful ways and for that I will forever be grateful. I don’t have to name names; they know who they are.

The singular most important lesson I’ve learned has to do with patience, but it’s really beyond that. I have learned to meet people where they are. I control myself and only myself, and in general other people are most often doing what they feel is right, even if it feels wrong to me. It’s not my business to tell others how to live when all of us are just muddling through, doing the best we can. That alone has made me a calmer person and I hope to keep that lesson handy as I move more and more into the “real” world beyond cancer.

For now, however I have five more weeks until my husband and children meet me in the U.S. To ring in the New Year.  There will be a lot to celebrate when they arrive, and even more when we head back to Tokyo in early January.

There is more writing on this topic to come, but for now I want to thank you for sharing my journey. I’m thankful and grateful for your company. Onward Ho!

Lessons in Control and Empowerment

CI’ve been reading Sheryl Sandberg’s controversial book Lean In.  Chief Operating Officer at Facebook, Sandberg took a lot of heat for her views about women in the workplace.  Many women felt her expectations and ideas were great for a family of a certain means and that her advice is not applicable to “every-woman.” Sandberg writes convincingly and powerfully, but many of her suggestions come with the double-edged sword of a position of privilege.  That being said, the book has wonderful ideas about how both men and women can change themselves AND the workplace to create an environment of equality.

One thing that resonated with me is Sandberg’s chapter on how women need to make their husbands true partners if they want to succeed in the workplace.  By true partner, Sandberg means that division of labor has to be equitable in the home when both partners work.  Sandberg admits that in her house, the labor is divided along gender lines – he pays the bills; she plans the birthday parties. She also says that it’s a constantly evolving balance that they negotiate often.  The key, she says, as with many things in marriage in general, is communication, not always an easy task in itself.

In the chapter, Sandberg encourages, no, instructs women is to empower their husbands.  She cautions that if women are constantly criticizing the way men actually DO the jobs they are assigned in the house, then the men won’t feel motivated to continue doing the jobs and women will be worse off than before – doing their husbands’ jobs themselves when the men give up for lack of support.

This reminded me of a story.  When my son Bailey was born, my control-freaky self went ballistic trying to have everything done perfectly.  It actually took a therapist to tell me that it didn’t matter if I did the top of the carseat buckle first and my husband buckled the bottom latch first – the end result is a baby who is safe in the car.  I had actually been criticizing the way my husband was buckling the baby into his seat! It’s no wonder I was feeling overworked and annoyed all the time – if my way was the best and only way to do everything, then I was causing my own problem by making Marc feel unmotivated to do anything for the baby, or for me. I learned to let go – a little.  Letting go is still an evolving process for me fourteen years later.

But is precisely now, fourteen years later, that this lesson is coming back to haunt me, both in light of the carseat story and Sandberg’s point. I have been in the U.S. since June taking chemotherapy for lymphoma.  My husband took the kids back to Tokyo in August to start school again.  There was no reason to take them out of their “normal” lives in Japan, especially when we don’t have a home in the U.S. and I was in no position to take care of them.  Marc has done an exceptional job of primary parenting so far, with about six weeks to go (if all goes well).  The kids are happy, healthy, doing well in school and haven’t missed a single event. Marc attended back to school nights, grade-level coffees, football games and violin lessons. He does some of these things in our “normal” life, but not all of them.  He has done it all while holding down a full time job.  Yes, we have a great nanny, so that has helped, but the primary responsibility is still Marc’s.

My job, my only job, has been to focus on getting well.  That being said, I generally talk to the kids twice a day and try to help where I can – sending emails and doing any necessary online research.  It’s not much, but it’s the best I can do. There are a thousand things I think of every day I would like to do for my kids – or do differently than Marc is doing.  I would like to handle the homework situation in a stricter way, make arrangements for playdates further in advance and even allow the kids less TV time.  But I would never tell Marc any of that (please keep my secret). As often as possible I sit on my hands and keep my mouth shut. I want him to feel like he’s doing a great job and motivated to continue the hard work. If I criticize, he’ll just feel defeated and then we would all be up a creek.  I mean it when I say Marc is doing an amazing job – handling everything with grace and aplomb.  Even when I don’t agree 100%, I still cheer him on.  From what he tells me, Marc appreciates the support I can give him, and in some ways, is enjoying the experience – certainly enjoying being with his kids more than he ever has been in the past.

This is yet another unexpected gift cancer has given us: Marc has had a taste of primary parenting and consequent juggling, and I have had a real lesson in abdicating control.  Obviously I’m not yet sure what parts of this we will take away from the experience, but I hope we have all gotten messages about control and support – both in giving and taking.  Sheryl Sandberg is right: it’s not about perfection – it’s about empowerment. Marc and I can appreciate each other for doing the very best job we are capable of doing, and thus all four of us are motivated to improve on our best selves.

Patience, More or Less

CYet another unexpected gift from Cancer is an increased level of patience. I have no choice: I wait in doctors’ offices; I wait for test results; I wait for people to pick me up and drive me places; I wait for dinner to be ready – I just wait.  Sometimes, like with a CT scan, I have to wait while the disgusting drink settles in my system and then try to wait/relax in that ridiculous machine while avoiding thinking about how tiny the opening is. What I’ve learned to do is always have something in my mind that I need to mull over, or notate in my ever-present journal.  It’s one of those lessons that I would like to take back with me into my “real life” which really isn’t too far away.

I also have more patience with people.  Lousy store clerks don’t annoy me, nor do slow waiters. I’m hoping that carries back into my “real” life also – in terms of being patient with my kids.  Don’t forget, it has been almost three months since I’ve seen my children in person, though we speak once or twice every day on Skype or FaceTime.  I miss them wildly and often wonder how our family dynamic will be different after this experience.  I do hope my new-found patience carries over into it.

There are a few things, however, for which I have LESS patience.  Here are a few examples: I have no patience for people who complain and have no intention of finding a solution to their problems because it’s more fun to complain.  I no longer have patience for people who worry about wrinkles – while everyone wants to look their best, me included, wrinkles have become a badge of honor to me – a badge of honor of a life well lived.  I have lost my patience for people who drive distractedly.  Just wait until you stop to text or call! If you miss a turn, don’t try and cross five lanes of traffic for a correction; wait until it’s safe to turn around. In the long run, what’s a few extra minutes?

The thing that really gets me is people who expect other people to change their circumstances.  Women who expect men to make them happy or vice versa – kids who are supposed to make their parents happy, or vice versa. Each of us is in charge of our own lives.  In the best case scenario, we make ourselves happy and are then lucky enough to share our happiness with someone else – a spouse, a child, a close friend.  But the happiness, really deciding to be happy, is an individual choice we each have to make every day.  Some days it’s easier than others, I get that.  But I really have no patience for people who choose to wallow in misery or negativity.  In this horrible exercise called Cancer, I’ve had a lot of dark days, but none so dark that I can’t get up and live my life the next day.  That’s my favorite mantra with my son, Bailey, age 14: the greatest part about bad days is that THEY END. My friends Brian and Bonnie use the mantra all the time now, too. I have had endless support in this endeavor from wonderful friends and family who support me daily, and for this I am grateful. It seems impossible to me to wallow in lousy circumstances when there are so many people who love me and want to help me.  I have been very lucky, and lucky enough to have the ability to appreciate it.

Forgive me for sounding preachy, but I think it all comes down to gratitude really. It’s okay to spend a little time mourning for the things we don’t have, but the more useful exercise is being grateful for the things we do have.

Right now I’m struggling to have patience as I wait until next week for the results of a bone marrow biopsy. I had a clean PET scan that shows no lymphoma present, and so this biopsy, which had to be repeated for accuracy, is my last hurdle.  I am trying my best to fill my time with fun activities with friends and things that I love to do, including eating really good food.  There is a lot to celebrate already – and I’m trying to stay focused on that as I wait.  Patience… patience…

Post-Chemo Testing

CSometimes, in a case like mine, I feel badly for the doctor.  She was young and cheerful, anxious to do a good job for me.  Dr. Yu is a Fellow in Hematology/Oncology under my wonderful Dr. Siegel and I trust her completely.  This was not my first time meeting her and every time I’ve seen her, she has been competent, thorough and respectful.

My chemotherapy is now finished, and while Dr. Siegel is pretty sure that everything worked well, we have to go in and double check.  By going in, I mean scans and another dreaded bone marrow biopsy.  In June when I was first sick, I went into the hospital and spent the entire first day in testing.  In one day, they put in a port, did a bone marrow biopsy, and took an EKG, chest x-ray, CT and PET scan.  There might have been more; I just can’t remember.  The Lymphoma was in my bone marrow, making it a stage four disease.  With Lymphoma, there isn’t a different protocol for a different stage of disease, but they want to know the exact details before starting and want to know for sure that it’s gone at the end. Now that I’ve been through six rounds of chemotherapy, Dr. Siegel went ahead and ordered another bone marrow biopsy and CT and PET scan. He told me Dr. Yu is the biopsy expert and we scheduled it.

The first time I had the bone marrow biopsy, I was supposedly in “twilight” sedation, but I remember the entire thing and how horrible it was.  I also bled a lot afterward because the doctor didn’t put enough pressure on it or bandage it well.  The experience was awful and I was not looking forward to the repeat.  In fact, the idea of it was keeping me up at night worrying.  The night before the big day, I took an Ativan, a muscle relaxant, to ensure I would sleep.  I didn’t sleep a lot, but even a little bit was better than nothing.  I took another pill an hour before the test, and then one more a few minutes prior – I wanted to be as relaxed as possible.  In addition, my chemo nurse, Katy, gave me a shot of morphine to dull pain.

There was another doctor in the room to assist Dr. Yu, but I barely remember him.  It was clear from the beginning, however, that he had never done this before and Dr. Yu was teaching him.  That’s the thing about a teaching hospital: there’s always someone learning “on” you. It is a little odd at times, but generally it doesn’t bother me; it’s worth it to be under Dr. Siegel’s care – he’s teaching his interns and fellows his wonderful technique and bedside manner.  This doctor assisted Dr. Yu by handing her instruments and vials, but I never heard his voice like I heard Dr. Yu instructing him and speaking reassuringly to me.  Bonnie said he was a little green – it can’t be fun to watch this procedure from any point of view.

To do a bone marrow biopsy, the doctor has to numb the hip on the surface, then numb inside, right down to the surface of the bone.  Then she has to put a needle into the bone to draw out some blood and marrow – four vials worth –and then she has to use the needle to take off and hold a chip of bone, pulling the chip all the way out with the needle. In June it had taken the doctor two tries to get the bone out.  As we joked, I am a literal hard-ass.  But the joke was a cover; I was white with fear – and by that I mean that my brain felt like a cloud of white.  I couldn’t think; I could barely form a word in response to a question.  I felt blank and just focused on the task at hand.  I’m not sure if that was fear or medication, but emotion went out the window, replaced by determined action.

Katy was there for a few minutes and had given me an encouraging hug and wink.  Ellie was there, too, just outside the room, and she did her reassurance move where she looked me in the eye and nodded. Bonnie was in the room with me and she positioned herself by my head as I curled into the fetal position, as instructed, on the bed in the little room in the corner of the chemo center.  I just wanted to get it done.  I focused on getting through it to done.

As Dr. Yu started, she told me she would talk me through the entire procedure.  Bonnie wove both of her hands through my left hand and my right hand held tight to the bar against the wall.  We commenced.

I squeezed my eyes shut.  The initial numbing wasn’t a problem, and the numbing of the bone, while mildly painful, wasn’t a big deal.  I used a lot of Yoga breathing techniques to get through the collection of the marrow as Bonnie did her best to chat us through it, talking about TV shows, funny kid stories, some of my writing experiences, and anything else that came into her head.  Dr. Yu, for lack of a better word, had to wiggle the needle to get the bone chip off and out.  The pain referred from my right hip where she was working, directly to my left hip.  A little whimpering, a lot of Yoga breathing.  Then the worst thing: it didn’t work – she didn’t get the bone chip out.  We had to do it again.  “Just do it,” I said, gritting my teeth. “Don’t talk about it; just do it.”

Dr. Yu numbed another spot on the bone. This time, however, when she wiggled the needle, she hit a nerve and pain flashed relentlessly down my right leg.  That was the only scream I let out completely.  I couldn’t help it.  I actually swung my right hand toward it and Bonnie had to grab my hand so I wouldn’t accidentally hit the doctor.  She murmured and stroked my head and Dr. Yu told us she was going as quickly as she could.  The pain rumbled up my leg and into my back.  It seemed like ten minutes, but in reality it was only another second or two until Dr. Yu cried out, “Got it!” She quickly pulled out the needle, pressured the wound and covered it.

“You’re okay,” Bonnie murmured again, still stroking my head.  “It’s done.”

“Is it done?” I asked, “Because I really need to cry now.”  And I finally proceeded to cry, Bonnie’s voice in my ear telling me it was all right.  All done.  I let all of the angst and fear out, just allowing the tears fall.  All done.  I did it.

Bonnie and Dr. Yu helped me move from my side to my back to further pressurize the wound and I was still breathing hard as Dr. Yu was cleaning up.  She apologized again for needing to take two tries, but I knew it wasn’t her fault.  I am a hard ass right to the end. She left with a smile for Bonnie and me, telling me she’d see me next week with Dr. Siegel to give me results of the tests.

Trying to get up a few minutes later, I realized I couldn’t walk well because of the nerve hit on the right leg – it was like my leg was made of spaghetti and I couldn’t put pressure on it.  However, once I started using it and just moving the leg, the nerve calmed down and started working again.  It took a few hours, but my leg was fine.

I had a long day ahead of me with scans that needed contrast dye, and Katy was able access my port so I wouldn’t have to have an IV inserted. I had to drink that yucky barium, but then I could just rest and lie down on a table that moved me in and out of a machine. In the end I walked out of the hospital on my own steam, tired, but really just fine.  Bonnie was with me for the entire biopsy.  I still can’t believe what a rock she has been.  I wouldn’t be getting through all this without her. Ellie was there all day – the entire day – holding my arm to walk me back to the car so I wouldn’t fall.  She takes excellent care of me every day.

Dr. Yu is a compassionate and careful physician.  Her patients are lucky to have her skill and grace. I wish I hadn’t been so much trouble for her, and while I hope I don’t have to meet her often in the future, I know she will have a very bright career as a doctor.  I’m glad to have experienced her art and skill.

I’ll get back to you next week with results…

A Great Karma Story

CI squinted at the parking meter machine in front of me. All I had to do was put money in, tell it how long I wanted on the meter, and it would spit out the proper receipt for me to place on my windshield. The October morning sun lay out over the car and glinted in the windows of the tall buildings in a way that told me the car would be in the shade shortly.

Just as I put the ticket under my windshield wiper, I looked back and saw a man walking toward me. This was a city – Baltimore; there were a lot of people walking toward and away from me, but this guy was headed on a beeline right for me. I wasn’t really worried.  It was a crowded street in broad daylight. But I didn’t have any idea what he could want from me.  He was a big guy, tall and broad, with a deep chocolate complexion and a wide mouth full of teeth – one of them large and gold.  I only noticed his teeth because he was smiling.

He held out something in his palm. “Hey,” he said, “I just donated to cancer research over there.” He indicated down the street with his head. “I got this pink bracelet. You’re kinda cute. Do you want it?”

It took me a minute to catch my breath as I looked at the standard-issue pink, rubber bracelet in his hand. Who was this guy? “You know,” I said slowly, “I have cancer.”

“You’re kidding me!” he exclaimed, his palm still outstretched.

I shook my head. “It’s true. I just finished my last treatment and hopefully I’ll find out soon that I’m well again.”

“Then you have to take this bracelet,” he said, putting it into my hand, which I had put out.

“I will,” I said, nodding. “I’ll take all the good karma I can get.”

He shook his head a little. “This is so cool. Hey, you have a good day.”

“You just did your good deed of the day,” I told him, “I hope you have a great one too.”

“I will,” he assured me. The guy grinned even more broadly and continued on his way up the street.

I was headed in the opposite direction from him and grinning, too, as I clutched my pink bracelet tightly.  I might have been skipping instead of walking as I thanked the universe for thinking of me.