Mrs. 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.
Last year at this time I was reeling from the effects of my second chemotherapy. Now, I’m healthy and happy and grateful for every moment. I’ve spent the summer relaxing with my kids and various friends and family members, but also doing things that I wasn’t able to do last year. One example is eating – fresh fruit and veggies were on my no-no list because of the risk of infection from any bacteria. I have been eating fruit and salad like it’s going out of style. (I had a strawberry and spinach salad with sesame dressing the other day – WOW!) I have been swimming a few times, which I never did. I also went white water rafting and zip lining in Harper’s Ferry West Virginia with some amazing friends. The entire time I kept pinching myself – I was just so grateful for the air on my face and being outside and using my body to enjoy myself. It might sound hokey to you, but I have been focused on appreciating every moment I have.
Today I went to see Nancy Emamian at Images Salon in Chevy Chase, MD. You might remember that about a year ago, she shaved my head as my hair started to fall out and she made it as lovely and gentle of an experience as possible. Today I needed a haircut. We both said a little prayer of thanksgiving as she trimmed my growing mop. She is such a warm and loving person – and a wonderful stylist to boot! I am thankful to be under her care. Here’s how the hair looks now. Still curly!
What a life! Enjoy your summer, wherever you are.
The bracelets themselves are from a company called Alex and Ani. Popular in the U.S., the company mission embraces values such as mindfulness, positive energy, sustainability and corporate consciousness. They pride themselves on supporting local business and manufacturing in the United States. Every piece of their jewelry is accompanied by an explanation of its meaning and phrases of empowerment. It is a great business model to support.
My first bracelet was a birthday gift. My darling friend Bonnie’s daughter bought it for me. Bonnie’s birthday is just a few weeks after mine, and Julia (age 15) bought the best friend bracelets for us. (Bonnie is the friend who managed my cancer care from start to finish, you might remember) I treasure the meaning of the charm, the sentiment behind gift, and most of all, the friendship it represents.
My second bracelet I bought myself in November, just a few weeks after Dr. Siegel pronounced me cured of lymphoma. It says “Live a Happy Life” on it. The card it came with says that the bracelet embodies the spirit of courage, appreciation and choice. The full content says, “Choose kindness, love, and joy. Live life to the absolute fullest and open your mind up to spontaneous ideas. Live fearlessly, be optimistic, and become blissfully aware of life’s gifts. Adorn yourself with the Live A Happy Life Charm to acknowledge the blessings in your existence and to be an inspiration to all.”
I don’t know about inspiration, but I do know that I strive to live every day acknowledging my blessings, for they are myriad. The jingle that I wear reminds me all the time that I am loved and even in times of challenge, I am strong and lucky.
So please, next time you see me, ask me about my bracelets; I’m proud to show them to you.
Some days are better than others with a teen and a tween in my home. Last week I fought with Bailey about money, and with Sydney about her hair. That doesn’t even scratch the surface of a few contentious evenings regarding schoolwork, reading, and Facebook chatting. I don’t want to make it sound more difficult than it is, but it is definitely different. I keep wondering at this phenomenon. Different how? Different from when? It turns out that in my six months of absence due to successful cancer treatment, my kids changed as much as I did.
In the past two months since being reunited with them, I’ve had to get used to a high school freshman who is more likely to think about dates and ski trips than the video games over which he used to obsess. (It’s not that he never plays anymore; he just doesn’t obsess.) I now have a middle school daughter who gave up her colorful backpack in favor of a trendy Vera Bradley bag to be just like everyone else. I’ve had to get to know these kids all over again. It turns out that Sydney loves a TV show called “Dance Moms” and has switched from playing the violin to playing the guitar because it’s an instrument she can sing with. Bailey was on the freshman debate team this year and has discovered a passion for argument. He has buddies across ages and genders with whom he talks daily.
The boundaries are new; the thought processes are different. For the first few weeks, I was arguing with Bailey all the time until someone said to me, “Aimee, you have an entire lifetime to be on his case, but you only have three more years to build your relationship with him because once he’s out of the house, the building part is done.” The words resonated: I have to think about I want Bailey to interact with me not just now, but in the future. How on earth was I going to achieve that balance between strengthening our relationship and being an authoritative parent?
Being a reader, I sought out writing to and for parents – often mothers – with teenagers. A lot of it focuses on encouraging the mothers, validating their frustration and acknowledging what a tough time it is for the entire household. But in general, having read parenting books, articles and blogs for all of my child’s life, I note that so many of the articles I found on the topic minister to desperation. Sharing becomes more difficult because instead of cute little problems, our kids have bigger problems, ones that could potentially affect the rest of their lives. That little saying about little kids and little problems turns out to be true!
My favorite piece, posted by my friend Carrie, is “Dear Lonely Mom of Older Kids.” It’s a blog post that reminds parents that they’re not alone – and that parenting middle school and high school kids can be a lonely business. Fewer people are willing to talk about the trials and tribulations of having older kids and the bigger problems it can cause in the family. The piece is reassuring, comforting Moms and telling them that everything will turn out all right – eventually – and Moms will discover an inner strength they never knew they had in the process.
To that end, I also enjoyed the piece given to me by my friend Jacqueline from New York Magazine cleverly titled “The Collateral Damage of a Teenager.” People never talk about how tough it is on the entire family when the cuddly kid turns into a sullen teen. The piece is long but worth the read, covering topics such as parent conflict (with the teen and with each other) and resolution, sibling effect, and the most interesting part, about how and why the suffering ebbs but changes once a kid leaves for college.
These days my friends and I discuss our kids in light of behavior expectations, technology interruptions and distractions, and getting into college. But we’re still talking. One friend’s kid can’t pass math; one friend’s kid got on to the baseball team while another kid didn’t. There are ups and downs and the only way to survive them is to derive support from those who have gone through it before or are going through it with you. It doesn’t matter if your kid isn’t getting a 4.0, playing an instrument and five sports. Parents need other parents who won’t judge or compare. We need to do that for each other.
And then there’s the communication with the kids themselves. I have learned to listen more and talk less. I have learned to ask questions before making demands. I have learned to shoot off a quick text instead of calling if I want a response. I shouldn’t say “I have learned” but rather, “I AM learning.” It all happens in fits and starts and some days are more successful than others. My children and I had to spend some serious time apart from each other and so we’re all interested in spending time together now. That instinct might fade, but it might not. So far the kids are still communicating with me. What a gift.
Everyone grows and changes over time and it seems that the trick is to allow kids to do it safely and securely while hanging on to your own sanity – even if by a thread. I have no magic solutions or ideas, but simply gratitude for the kids I have raised so far and the loving friends who laugh with me as we go through it all together.
As you probably know, I was away from the kids for more than six months due to my successful battle with lymphoma, so I wanted to do something special, something meaningful for them to remind them that I’m here, I’m here to stay and I love them. Beyond that, though, being away has given me a little distance on the kids and I feel like I’m looking at them with fresh eyes. These kids are not perfect, not even close! But for an 11-year-old and a 14-year-old, they’re pretty great people with a myriad of talents, ideas, and activities. These hearts also serve to remind me of the things that make them special – to me and to others with whom they interact. And it shows them specifically that they are valued by their dad and me. I continue to be grateful.
Bring 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!
I’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.