Routine Disruption

Everyone gets into routines – processes that you do often enough that you don’t think about it when you’re going through the motions. Imagine your morning routine – shower (shampoo, soap, rinse, dry), deodorant, brush hair, etc…  You probably go through that routine without much thought. Occasionally, you forget to check if your shoes match or to pack your underwear to wear after a morning post-work out shower.

If you have children, getting ready for school is probably another routine. Such a routine is only modified by a sleepy, grumpy child who is unsatisfied with their clothing or breakfast options.

One of my routines involves taking medication twice a day to ensure I don’t have seizures. My alarms – mine, my husband’s, and my daughter’s verbal reminders – go off at regular times in the morning and night so that I don’t forget to take these essential medicines. If I have a seizure, I can’t drive for at least 3 months, I end up in the hospital, and if my seizure is not brought under control I could get (further) brain injury or worst case, die.

99% of the time, this routine goes off as planned. IF there’s a lot going on at the designated times (usually non-routine activities), even with all of the alarms, I can forget. My alarm goes off and I get up to take my meds and I get distracted between the family room and the kitchen (where my drugs are stored). I’ll stop to do any variety of things on that short journey from one room to the next and then carry on with another variety of things – sometimes ironically trying to remember . Forgetting the one critical thing I got up to do. My short-term memory issues create some risk with my high level of distractibility. 99% of the time, there’s someone around to remind me. Every once in a while that’s not the case, and I have to ask someone with a better short-term memory to recall whether they saw me swallow my pills.

Occasionally I have to leave the house before the morning drug ingesting hour and alarms. This is where the routine of the drugs takes over. I carefully dispense my handful of drugs to take with me. Then I grab my bottle of water and swallow them…early. The downside of a regular routine. While I still manage to get my drugs morning and night, they’re sometimes a little off in timing. The important thing is that they’re working and I feel pretty great.

But it continues to be a learning process. While the alarm system works very well, sometimes a fail safe is a good idea. This is where pill containers come in handy. I never thought that at 45 years old I’d be looking for the perfect pill container to organize my daily drug regiment. I’m looking for a pill container with a full week of am and pm compartments. There are so many choices, I’ll probably get distracted and walk to another aisle to find some shampoo.

And so the battle to live life with brain cancer continues.

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.

momciame

 

One Less Thing On My List

I talked a while ago about my revised bucket list after my diagnosis.

One of the things on that list was ‘get a tattoo’ and I can now cross it off my list.

I’ve been thinking about getting a tattoo for a long time, but when you’re going to put a permanent piece of art on your body it better be something that has meaning to you. It doesn’t matter if it has meaning for others – it’s yours and yours alone. It’s also something that you have to live with the rest of your life – so that meaning has to mean something to you 5, 10, 30 years from now. I’m old enough to not go into this lightly – no spontaneous decisions. My experience with brain cancer, the support of my family, and the promise of life gave me the inspiration I needed to come up with an idea for a tattoo that meant something significant for me.

The next step is finding images of the elements of the tattoo to bring to a tattoo artist, giving him/her enough to do what they do best. The right tattoo artist will use those elements to design a tattoo that incorporates them into a piece of art that reflects the image you had in your head. That tattoo artist should be someone recommended to you by someone who has experience with him/her and who’s work you’ve seen and like.

Then you need to convince your 10-year-old daughter that having a tattoo won’t change me as a person. That it won’t be on my face. That I’m old enough to make decisions that don’t require her full approval. That once it’s done, I’m certain she’ll like it. Finally to dispel the stereotypes that have obviously settled into her mind about what a person with a tattoo is like – reminding her that you can’t judge a person by their outward appearance.

This is the result of that experience for me:

IMG_5198

The tree of life
Blooms and leaves of new beginnings and the promise of ongoing life
Sisu – a Finnish (I’m a Finn) word generally meaning courage, persistence, and resilience
A heart representing the love and support my family offers to hold me up and keep me fighting
And 3 birds representing my children and my husband (also an homage to Bob Marley’s ‘Three Little Birds’)

This is a very personal piece of art for me. If you were to get a tattoo, it would likely be very different from mine. I think it’s beautiful and perfectly reflects the image I had in my head. I am confident that I will proudly display it for the rest of my life – which will hopefully be a very long time.

Assume Nothing

I was thinking about the assumptions that people make about others – specifically people they don’t know.

Having an invisible disease, I’m very much aware of the fact that what I do and say sometimes doesn’t indicate that I’m fighting for my life each and every day. People who know, but maybe don’t have the details, assume I’m cured. People who don’t know may wonder why I’m not working; why I close my eyes and pause when I can’t find words that used to just slip out of my mouth; why I forget to return phone calls, emails, or complete action items; why it seems like I’m ignoring people when our surroundings are overstimulating; why I have multiple reminders/alarms on my phone for things I do EVERY SINGLE day, but would forget if it weren’t for the reminders/alarms.

I’ve occasionally wondered what it would be like to be someone else. Specifically random people I see on the street. Maybe that’s weird, maybe everyone does it, I don’t know. But knowing what my life is like, I wonder what theirs is like – to experience living in someone else’s world for awhile. But wouldn’t it be interesting to see the world through someone else’s eyes? What choices have they made about what to do for a living? What political/social/religious views do they have and why? What would it be like to excel in areas that we stink at in our own lives – like speaking 2 or more languages fluently, skateboarding without risking life or limb, singing without making the dog howl… Or experiencing more serious things like having a mental illness, making the decision to pay rent or buy food for your family this month, feeling ostracized for being ‘different’ in the eyes of others.

So, while we are quick to make judgements about others – and we ALL do – maybe we should pause and think about what it might be like in their world. Don’t assume that mother with 3 children under 6 who’s lost her patience and yelling is a bad person. Maybe she’s exhausted and just really needs a break to take care of herself for a couple hours. Don’t assume that the quiet guy in your building is reclusive and perhaps mentally unstable. Maybe he’s an introvert and has a hard time initiating conversations and is working out an engineering challenge in his brain while he gets his mail. Don’t assume that the tattooed guy driving by your house in his jacked up truck is a self-centered ass – maybe he’s a giving person who has a happy family, but has an affinity for big trucks and body art. Appreciate his cautious driving down your block and the wave he offers each day.

Don’t assume you know someone based on the way they look or their actions in a single shot of their lives. Take the time to get to know them or at least consider what it might be like to live in their shoes and see the world from their eyes. Maybe you’ll be lucky enough to have them doing the same for you.

(Thank you Craig for the reminder and the inspiration)

Today’s Beautiful Things

Cuddling with my son in the car while we waited for the first bell to ring (his sister starts 20 minutes before him)

Sunshine on my back and the cool winds of California winter/spring

The smell of flowers in bloom and the beauty of the blossoms filling the trees

IMG_9258

Watching birds gather nest materials for the first nest in our birdhouse (our new tenants) – my dad confirmed that they’re Oak Titmouses

IMG_9264

Seeing the finches eat through 3 bags of seed in less than 2 days

IMG_9255

Witnessing the squirrels risking their lives to come into the yard in search of nuts they buried in the fall (the dog has yet to catch one)

Wearing sandals as we approach a few days of summer-like temperatures

Finding so many signs that life is renewing and vibrant as we approach spring

Reminding myself that I’m still tumor free

Add to list: seeing the first butterflies of spring

Take A Risk And Live Truly

Death is not the biggest fear we have;
our biggest fear is taking the risk to be alive -
the risk to be alive and express what we really are.
- Miguel Ruiz

What risks are you going to take today?

What have you always wanted to do, but haven’t for fear of judgement? For fear of failure? For fear of…?

Who is your true self?

Time is short. Live for today. Let that true self shine through.

Take a risk. If it doesn’t work out, try again.

The real regrets in life are the risks you didn’t take.
- Habeeb Akande

What If?

It was MRI day for me today. The typical anxiety and ‘what ifs’ set in this week.

What if it’s back. What if we have to explain the possibility of more surgery and associated risks to our kids. What if we have to explain that I may die. What if I do die.

Every mother out there is familiar with the ‘what ifs’. Once you have children, a whole new set of fears enter your brain. You know what they are. This is really no different, except that to address these ‘what ifs’ I can’t double check the window locks. I can’t tighten the straps of a helmet. I can’t teach them about stranger danger. I can’t teach them how to defend themselves against the bad guys.

I’m fighting as hard as I can against the bad guy lurking in my brain and so far, I’m winning. The ‘what ifs’ have lost.

MRI was clear. 17 months clear.

Suddenly, Everything Can Change

We’ve seen so many losses recently. Sudden, unexpected losses. Some of those lost were actors, survivors, musicians, and other creative contributors that enriched our society and culture. Some of those losses were friends and family members. Some had been bravely fighting illnesses, some were killed in accidents, some succumbed to the frailty of age.

My family alone has experienced some of those losses in the last few months. We’ve lost good friends and those close enough to call family, even if we weren’t related by blood. It’s inevitable, these losses, because everyone dies at some point. I don’t mean to be morbid, but it’s a fact of life. No one lives forever, no matter how hard they fight. Sudden loss gives us a shock, makes our heart stop while we process the news. We begin to grieve without the chance to prepare.

These losses remind us how it can all change in the blink of an eye. One day you can be happily living life and the next the lives of those you leave behind can suddenly change.

So, as we grieve the losses, remember that you shouldn’t put off getting your affairs in order. Don’t go to bed angry with your spouse. Tell your children that you love them and are proud of the way they go through life with courage. Remember to teach them how to do those critical things that so many parents do for them these days – cook, clean, mend clothes, fix a broken pipe, change a tire. Remember to teach them manners, how to respect others, how to love unconditionally, how to have lifelong friendships. Set an example for how you want them to live in this world – how to fight for their beliefs, understand right from wrong – and how the right decisions aren’t always the easiest, how to stand up for others, and to set a good example for their own children.

Make your mark today. Prepare to reduce the burden on your family when you go – don’t put off getting your affairs in order. Express your wishes, in writing, about the decisions you want your family to make regarding your health. It’s hard, extremely hard, to discuss these details because no one wants to think about their death. But be brave and get it done now. Even if you’re not ill today.

Remember that suddenly, everything can change.

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

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

Sleep Away Camp

I never went to sleep away camp when I was a kid. The opportunity just never arose. Instead, I went camping, backpacking or took road trips with my family.

My kids have the opportunity to go to sleep away camp this summer. This camp is designed for kids with a parent who has (or had) cancer. It’s meant to allow kids to have a great week just being kids, with the opportunity to talk about their experience if they want to, or not talk about it if they don’t. It’s not therapy. They have the chance to make friends who are going through the same kinds of things they are.

My littlest is excited to go. My eldest, not so much. She wants to bring a friend. Since none of her friends have parents with cancer (thank goodness), that’s not really an option. She fully believes this will be a week of therapy, even with multiple assurances that it’s just meant to be fun – no therapy involved. She’ll meet new friends, try new things, laugh a lot and come home asking when she can go back. She still doubts us.

She’s normally resistant to trying new things, even though experience has shown that when she does, she enjoys it. Soccer being a good example. So we weren’t surprised when she replied to our announcement with a firm, “I’M NOT GOING!” So, we dug a little deeper.

With as much as we’ve talked about it and as open as we’ve been to questions, she doesn’t want to talk about my cancer with others. It’s not that it’s embarrassing (like everything else to a 10-year-old), she just doesn’t want to talk about it. I understand this, since it’s not something I want to talk about every moment of every day either. But it brings up a some thoughts about cancer from a child’s perspective. While we’ve been very open with our kids about what’s happening, when there’s nothing happening it becomes easy to ignore it or push it to the back of the closet. How do explain to a child that Mommy is doing well now, but it can all change in a heartbeat? Can you explain that to a 6 and 10-year-old without setting off extreme anxiety? Getting them to a point where they are constantly on edge waiting for something traumatic to happen? Or does that prepare them for the possibility of the trauma? We don’t know what or when, but we’ll likely see some more drama in our lives. How do you explain to children that something MAY happen, but we don’t know what or when?

So, coming back to camp. We asked her who, besides us and her grandparents and neighbors, she has talked to about it. She said no one. We asked if she had anyone who’s gone through something similar. She said no. We asked if she felt she could talk to any of her closest friends if she got worried or anxious or just felt like she needed to talk to someone about it. She said no and mentioned that some people don’t even know and she’d like it to stay that way. I understand where she’s coming from – I don’t want cancer to be everything that I am, with people treating me like I might keel over at any moment, dancing around me as though I might break. She doesn’t want to be seen as ‘that kid who’s mom has brain cancer.’ She just wants to be a kid.

I think the week at camp will be good for both kids, to be able to talk to other kids who’ve experienced similar things with their parents. But is that enough? Should we be taking the kids to family therapy? Should we be helping them to process the possibility of the worst case scenario more? Or should we just keep allowing them to ask questions, sharing information if anything changes, and continue to let them have their childhoods without their mother’s cancer interfering with their days and friendships?