2 Year Anniversary

Well, I did it. I beat the average survival statistic for a patient with a Glioblastoma Multiforme – the deadliest of all the brain tumors. I have brain cancer thanks to the mysterious golf ball size of aggressive malignant cells that grew in my brain. It’s been 2 years since that beast was removed by my brilliant neurosurgeon.

In those 2 years, I’ve gone through chemo and radiation treatments (which ironically has a risk of creating brain tumors) and began a clinical trial intended to train my body to fight the cancer. I’ve had 2 seizures (not counting the first) that have landed me in a hospital bed – the second one being life threatening. I spent months without driving privileges and still managed to get my kids to school and go to the grocery store thanks to my mom and my kind neighbors. My mom’s love and caring have provided my family with a consistent ‘normal’ life and have allowed me to focus on healing and fighting. I have grown even more fond of my neighbors and our spontaneous driveway parties and planned outdoor movie nights. I’ve napped, a lot. I went to New York with my husband. I’ve witnessed his courage, strength and love each and every day. I went to New York, London, and Paris with my family. I’ve read numerous books – most of them good. I met Diana Gabaldon and got her autograph. I lived through a kitchen remodel (not recommended while going through treatment.) I adopted a dog who is both sweet and crazy needy. I’ve watched my children continue to grow and thrive. My son’s guitar skills, love of soccer, creativity, ingenuity and love for some adventure amaze me every day. My daughter’s kindness, persistence at resolving social conflicts, strength in the face of adversity (like soccer ball kicks to her face), her natural skills in caring for young children, and her love of books and learning make my heart swell with pride. I have so many more things to be grateful for as I’ve attempted to live every day left in my life with joy and appreciation for the moments I’ve been blessed to experience in my uncertain future.

But the fight continues on. I’m fighting to still be here to celebrate my 4 year anniversary and my 6 year anniversary and so on…

Thank you all for the love, support, prayers and healing energy you’ve been sending my way over the last 2 years. They’ve gotten me to this point. I’d appreciate the continuing support to get to another anniversary.

As we continue the debate began by Brittany Maynard’s decision to move to a state that supports ‘die with dignity’ laws, let’s not forget the thousands of other people fighting this horrible disease and other types of brain tumors. We should also be discussing what can be done to develop new treatments and search for a cure so we don’t have to think or make decisions about how to relieve our own suffering in our last moments of life. Many of us with GBM’s have survived for extended periods of time, even if we received grim and specific prediction of the time we’ve got left. Fight on and see what miracles arrive and do your part to help others live longer in the future.

If you feel compelled to help focus on the brain tumor element of this story (not saying the national dialogue around ‘die with dignity’ is unworthy or less important), make a donation to the National Brain Tumor Association or any other organization of your choice that helps support research for treatments and cures, support for families and patients, and raise awareness of the other side of Brittany’s story.

 

My Mom Is Love

I am so lucky to have a mom like my Mom. My children are incredibly lucky to have a Nana like their Nana. My husband is thankful and lucky to have a mother-in-law like his mother-in-law.

I have so many memories of my Mom, but on this Mother’s Day, I’ll share a some of my favorites. I’ll leave out the ones that would embarrass my brother. (You’re welcome Jon.)

1. My mom was always trying new things. Candle making, brining freshly picked olives, macrame, cooking school, spending a summer cooking in a Scottish castle, starting a cookie business. Some of them stuck and some didn’t, but she was always game to venture out to try new things.

2. She lugged me around to the various activities that I wanted to explore when I was young – swim lessons, tennis, ballet, gymnastics, piano lessons, more dance lessons. She supported my enthusiasm for each activity and didn’t get mad (at least not in front of me) when I decided to move on to another. In my defense, having a ballet teacher tell you that she knows your posture is correct because you’ll be able to hold a pencil between your butt cheeks can turn you off ballet in an instant and she agreed it was odd enough to quit.

3. My mom knew EVERYTHING. She had a sixth sense about where I was, what I was doing, and had no qualms about magically finding a phone number of some stranger’s house (where I wasn’t supposed to be) and calling to say she was on her way to pick me up. My mom had a way of scaring the crap out of me by letting me know NOTHING was going to slip by her. Somehow that made me feel loved and safe – even if I didn’t admit it at the time. I can only hope that I can scare the crap out of my own daughter.

4. She encouraged me to continue doing things I loved doing, even when some b#%#h of a teacher told me I was a terrible writer and would never, ever be a good writer (or something equally horrible to crush a kid’s soul and dreams.) It took me awhile to get over that serious blow to my confidence, but my mom never gave up encouraging me and telling me that she had confidence in my skills. And look at me now Mrs. Merrill! Ppssshht (or however you spell a raspberry sound)!!

5. My mom survived my teenage years when I was nearly impossible to live with. She let me know that no matter how horrible I could be, she was still going to love me (even if it was REALLY hard.) The drama and angst of my teenage years were probably awful and I’m sure my daughter will put me through the same sort of torture. Even through that torture, she did continue to love me.

6. My mom has always been there when I’ve needed her – driving 6-7 hours to be there for happy and devastating moments. She was there to take care of me when I had nasal surgery to correct my deviated septum – recognizing the signs of a bad reaction to Valium when I pointed out there were tiny men dancing on my nose and then listening to me swear loudly as they pulled 6 ft of gauze out of each nostril.  She was there when I had my tonsillectomy – learning along with me that foods you’d NEVER think were acidic are acidic and agreeing that baby food was nasty. She was there when my daughter was born – immediately loving her unconditionally as she does all of her grandchildren. She was there when I lost my second daughter and quite possibly saved her twin brother in the process, experiencing devastation and tentative relief in rapid cycles. She arrived in the nick of time before my son was born and went out to buy preemie clothes when he was 2 pounds smaller than expected. She was there when I was diagnosed with brain cancer, taking care of my children, my husband and me as I recovered from surgery, went through weeks of daily trips to Stanford for radiation treatments, and suffered through chemo. All of this happening during a kitchen remodel – proving her status as a saint.

7. When I became vegan and married a vegan and then we decided to raise our children vegan, she made every effort to learn how to cook vegan meals for us. She doesn’t have to, but she does. She willingly cooks 2 meals when we visit, even during holidays. While I help cook some of those meals, she happily makes us feel comfortable, accommodating and respecting our dietary choices.

There are so many memories of my mom, I couldn’t possibly name them all here. She is amazing and I have learned so much from her about how to be a good mother to my own children. Thank you Mom for all of the sacrifices, love, and support you’ve given me through good times and bad. I couldn’t have had a better mother to lead the way in life.

Happy Mother’s Day today and every day.

 

   

My Mother’s Gifts For Life

I am very lucky to have parents who love and support me and my family, who have shown me that marriage can be hard but it’s worth the effort, that nothing is more important than family – blood or ‘adopted’. They’ve also supported me through bad decisions, good decisions, and the choices I’ve made about how to live my life – even if my views don’t always match theirs. I’ve written about what my Father has taught me and I think it’s time to talk about the valuable lessons I’ve learned from my Mom.

1. She taught me how to cook and enjoy both the process and eating the results. My mom taught many others how to cook, but my lessons were private.  One important lesson I got was that you should have at least 3 colors on the plate (ketchup doesn’t count). I still feel like I’ve done it wrong if I see nothing but beige on a dinner plate. She also taught me that sometimes pulling dinner out of the freezer is ok, baking isn’t for everyone, and cookbooks are for inspiration 90% of the time – use your imagination in the kitchen. Family recipes should be passed down and most can be modified to fit chosen dietary restrictions. This life skill has allowed me to make the change to being vegan without losing the joy of being creative in the kitchen.

2. Sit down as a family for meals. No one is too busy to NOT sit down for a good meal and connect with each other ever day – even if it’s a quick meal. As an aside, for bigger special occasion meals, get ‘fancy’ dish ware that can go in the dishwasher.

3. Create a garden – love, nurture and enjoy the bounty. Enjoy the process and take the time to prepare your soil – it’s the foundation for growing. (Yes, the implication was intentional)

4. Play with your children/grandchildren – even when you’d rather be napping, cleaning, or watching cat videos on the internet. They will feel valued and encouraged to continue their creativity. No matter how busy you think you are, there is always time to clean, do laundry, cook later. Love unconditionally now. Building Lego creations or tolerating crazy makeovers with children/grandchildren will always be more important than anything else on your list of to-dos. Let them wear a monkey costume out to dinner and be proud of them for doing it with aplomb.

5. Read as much as you can and escape into each book. Read what you enjoy and share books with friends. If a book isn’t catching your attention, leave it behind – there are too many good books to waste your time on any that you don’t connect with. Teach your children the magic of books, beginning with reading to them every day.

6. Give love and support to others – it may be the only kindness they have that day. Strangers need this kindness more than anyone. Don’t make assumptions about them or the choices that may have gotten them into a place of need. If they don’t accept your support, let them continue on the path they’ve chosen for themselves – sometimes people aren’t interested in what you can offer, even if it’s just a meal or a conversation. That’s ok, some people enjoy being the ‘victim’ of life or choose to live in a manner different from your own. Show them kindness and then let them go.

Your family may have needs at critical times in their lives. Do what you can to help take care of them. My mother saved me by taking care of my family, acting as my nurse when I went through chemo and radiation AND made the questionable decision to move forward with a kitchen remodel at the same time. You know your mother is a saint when she helps set up a temporary kitchen, continues to cook for your family, and washes any non-disposable dishes in a teeny bathroom sink.

7. Every child needs to learn how to cook some basic meals, clean, garden, do laundry (including ironing), and sew on a button before they leave home. Extra sewing, knitting, and gourmet meals are a bonus. These are critical life skills to have when living on your own. And every woman is impressed by a man who can sew and clean a toilet well.

8. You can show love to a child or grandchild when you create structure, establish rules, expectations, and consequences for bad choices. Love comes in teaching morals and responsibility, setting a good example, and understanding different points of view with respect and acceptance. Love comes in sharing time, showing generosity of spirit (rather than in physical things), and celebrating everyone’s unique self. Love comes in encouragement of success, displays of bravery and accomplishments big and small. This love creates confidence, a sense of security and an environment where your children/grandchildren feel safe telling you about their fears, problems, questions and discoveries.

9. People can grow when they’re exposed to new experiences, new ideas, and new points of view with an open mind. Living unwed with a dreadlocked reggae musician can sometimes work out well for all involved – you just may get a good story and a wonderful son-in-law. Traveling the world gives you a broader understanding of others’ experiences and culture than you’d ever get sitting on your couch and watching the travel channel. Sometimes your children need to learn by making their own decisions in life – support them, but let them learn through those choices and any consequences – don’t feel you need to ‘solve’ things. Good or bad, the lessons they learn will stick more than a lecture or having a solution handed to them based on YOUR opinions and life views. Allow them to grow and see the world through their own eyes.

10. Sometimes the ‘small’ things in life are the most important. Enjoy watching the birds at the feeders, the trees in bloom, the changing colors in fall, holding a baby, snuggling with a child, baking cookies – just because, or watching your children play harmoniously. Too many things can be overlooked in the hustle and bustle of life, sometimes you need to just stop and enjoy the journey.

Happy Birthday and thank you Mom for being the best role model a girl could ever have in life.

 

Goodbye Shirley

Shirley Temple Black’s passing touches my heart. Not only was she an inspiration for little girls everywhere who wanted to sing and dance, she was amazingly talented at her young age. Her movies offered an escape from the dark times during the depression era. She became a Hollywood and cultural icon and then, as an adult, became an ambassador. And they named a drink after her that gave children an opportunity to feel special when they went out for dinner with their family. No one can say she wasn’t amazing.

As a testament to her lasting impact on our culture, I had a Shirley Temple doll when I was little – in the 70’s. I loved her corkscrew curls and her smile, always her smile. She came to me with a cute little polka dot dress. I probably played with her for endless hours pretending she was singing ‘Animal Crackers in my Soup’ and ‘On the Good Ship Lollipop’ and dancing along.

My Grandmother loved to sew and she fostered my love of Shirley and dolls to come by making clothes for her. I don’t think I appreciated the talent she had in making complicated tiny clothes to offer Shirley a broad and diverse wardrobe. Shirley had pajamas, fancy dresses, coats, and casual wear – occasionally with a matching outfit for me.

My mom has carried on that tradition, lovingly making beautiful clothes for my daughter’s dolls. ‘Big Baby’ has jackets, pajamas, overalls, and fancy dresses. Her twin dolls, ‘Amelia’ and ‘Jackson’ have clothes she’s made as well – showing us that we’ve moved beyond Ken dolls and realized that boy babies exist in our world. My daughter has loved those babies and those clothes her whole 10.5 years and will likely continue to care for them her whole life – even if  she doesn’t play with them as she moves into her teenage years and becomes an adult. She’ll come back to them and remember her Nana’s love, just as I remember my Grandma’s.

I can sew – as my mother taught me, and continues to teach me – and I’ve occasionally ventured into doll clothes. I’m not nearly as patient or talented as my mom or Grandma, but one day I hope to be. I will continue to practice and hone my skills as I make clothes for friend’s children, getting to a smaller and smaller scale. American Girl dolls are fun, the wardrobes little girls amass are amazing (and expensive), but nothing will be as cherished and valued as the clothes made with a grandmother’s love.

I can only hope that I’ll be around to lovingly make clothes for my own grandchildren. I hope that my daughter (and son) will offer the clothes they’ve been given for their dolls to their children to play with and dress up their own dolls. I believe dolls are meant to be played with, not stuck on a shelf somewhere only to be viewed and not touched. For both boys and girls, I believe having a doll gives them an opportunity to learn how to gently care for another being – translating to the humans in their lives.

Thank you Mom and Grandma for these precious gifts and memories.

A sample of the many clothes my Grandma made for my Shirley Temple doll

An Amazing 100 Years

My husband’s grandmother turned 100 this year in January. She has passed away, leaving a legacy of love and a century’s worth of memories.

She was a powerful force – her brain still sharp as a tack, but her body quitting the game on her through her last years and days. She said, ‘It’s not much fun being 100, I’m not sure why anyone would want to do it.’

She lived a full and interesting life, one that demonstrated her determination, her intelligence, her generosity, her love of her family and her commitment to friends and community.

She went to college and graduated in 1933 with a degree in Chemistry. It was rare for a woman to go to college during that time, let alone study chemistry. Because there were so few jobs during the depression, she ended up teaching until she got married.

She moved her 2 eldest children from Kentucky to New Mexico during WWII to be closer to her husband – who’d been asked to participate in a top secret project in Los Alamos. There was no housing available for them (they weren’t supposed to be there, after all), so they bought and set up tents and lived in a Bandelier National Monument campground for the summer. Her youngest daughter was born in New Mexico, her birth certificate stating that she was born at a PO Box in Santa Fe – the only known address for the families associated with the project.

She survived two fights with breast cancer before modern medicine and treatments were fully formed. A mastectomy and radiation therapy were radical and new, but she made the brave decision to be aggressive with her treatment and showed the beast she was not to be reckoned with.

She had an incredible memory and was a great story teller. She had always been very athletic and taught exercise classes until her mid 80’s, at least. She left an indelible mark on her community, had lifelong friends, carried herself with confidence and grace, demanding respect without ever asking for it. We often use her as our guidepost for manners expectations – ‘would you sit like that in front of Grammie?’

I feel grateful to have had the chance to know her, learn from her, hear about her amazing life, and see the love her family had for her. I am also grateful that my children got to know their only surviving great grandparent.

She is survived by 3 children, 9 grandchildren, and 11 great-grandchildren. She was loved and will be missed greatly. She lived a full, interesting life and was able to leave this earth on her terms with as much dignity as possible.

Her family is remembering her today with immense love in their hearts.