Waiting With Bated Breath

Most of us with stage IV brain cancer (or any type of cancer, really) talk and think about how far ahead we plan our lives. At first it’s ‘recovering from surgery’, then ‘getting through radiation’, and other short-term, cancer related ‘milestones’.

Then it’s 4 week MRIs…8 week MRIs…12 week MRIs… And with any luck it doesn’t go backward from there. We feel nervous about planning anything beyond those timeframes. We live MRI to MRI.

At some point, when things are going well, we might venture out beyond the 12 weeks and plan a trip/vacation or buy concert tickets for a show 6 months away.

BIG family milestones might be too much – entering high school, first dates, driver’s license, graduations, weddings, babies. Those may be too far out and we can only tentatively hope beyond hope that we are here to witness it all. (My kids are 8 and 11, so we’re a ways off from most of those)

So, you start to find other, safer perhaps, big events that push you forward in your fight. Maybe it’s the World Series, the Superbowl or the World Cup if you’re a big sports fan. Maybe it’s the harvest if you’re a gardening fanatic and have been waiting 3 years for that Avocado tree to produce something…even just one avocado. Maybe if you are glued to political drama, it’s to view actual bipartisan decision-making in Congress or witness politicians representing the people instead of the money. Ok, that last one isn’t very realistic, but you get the idea.

For me (family milestones aside), I aim my survival goals at when the next Diana Gabaldon novel is coming out. I aim for making it through the final part of season one of Outlander on Starz (April can’t come soon enough.) I aim to see if I finally make a decision on joining a yoga studio. Can I get to 10,000 steps a day? Are there enough recipes to use all of my son’s harvest of sweet potatoes? Will the dog EVER learn to get his leash on his own when we’re going for a walk instead of staring at me while I suggest the idea? Will I ever get up the courage to make artisanal vegan cheese? Will we ever learn who was responsible for making that idiotic last call for the Seahawks causing them to lose the championship?

These may not be the most important survival goals in the grander scheme of things, but they all take me past the next MRI. They get me back to living for tomorrow and beyond regardless of what my brain tumor cells decide to do.

My next MRI is Friday, by the way.

Thoughts on potential employment

As a follow up to my Existential Conflict self-pity extravaganza, I was giving some thought to any and all job prospects.

Jobs that would be completely out of the question:
Driver – Truck, Taxi, School Bus, Delivery….you get the idea. While I’m completely capable of driving and have been approved by the respectable government organization which makes such decisions, I’m doubtful that any business would hire me to drive.

Strobe light tester – flashy lights and seizures have a long history of incompatibility

Surgeon – I’m not skilled for this role in any way, shape, or form

Mathematishian – I can’t even spell it right…clearly I’m not qualified for complex number problem solving. Also, I like words WAY more than numbers. Which is ironic since I spelled mathmatishian wrong…again.

Rave DJ – 1. Loud, repetitive techno music 2. Afore mentioned strobe lights 3. My aversion to rooms full of young adults under the influence of mind-altering drugs with various forms of glow sticks and pacifiers.

My non-negotiable requirements for any job I might consider:
Nap time – Liberal policies on crawling into a comfy corner or business-provided cot to have a little shut eye when my body tells me its time to take a little break with my eyes closed

Flexible schedule – Not a boiler plate policy allowing me to work at home (though that would also be required as well), but a level of flexibility that would allow me to pick up my kids after school, take days off when the kids are off of school (including summers), attend my regular doctor appointments, and unlimited random days where the Nap Time clause is insufficient for my needs. My hours will need to be strictly limited to 9am to 12pm only.

Fragrance free workspace – Perfume and ‘fragrances for men’ are offensive to the nose, as are artificial smells like cinnamon candles, air fresheners, or unreasonably scented hair and beauty products. All fragrances must be pleasing and approved by ME.

Vegan, protein rich snacks – Blood sugar balancing nutrition, vegan and delicious, must be readily available to prevent states of hangriness. No one wants to see me when I’m hangry, it’s not pretty.

Dog friendly workplace – My dog has separation anxiety and needs to be with his people or he cries. No one wants to be responsible for making my dog cry.

After giving it more thought, maybe I don’t really want a traditional job. I realize that not HAVING to work is a luxury and I am very grateful for that. Being a stay-at-home parent is something that not everyone can (or wants to) do. It can be hard, but rewarding work. I have the opportunity to volunteer in the school library, accompany my son’s class on field trips, and go grocery shopping in relative solitude.

While occasional feelings of guilt and insecurity for not being a rare Super Survivor may pass through my mind, I realize that my life is pretty awesome (aside from the cancer part). Self pity posts are hereby over. We shall now return to our regular programming.

Childhood Favorites

Your favorite childhood junk foods.  Have you tried them lately?

I recently told my kids about Circus Peanuts. How when I was a kid, my friend and I decided to eat a whole bag. We decided that they were, in fact, disgusting. We felt quite ill for the rest of the day.

Doubting my claims (as any strong-willed child does), my daughter insisted that she try them. Thus began the Great Circus Peanut Hunt of 2014. While they’re a classic (Me: WHY?) finding them in all of the usual places proved to be difficult. But with persistence and determination, we found some. In the sixth store (yes, I willingly went to 6 stores as any strong-willed mother would do to prove to my daughter that Circus Peanuts were not the delicious confection she was imagining in her mind) we finally found them…on sale. She had convinced herself that I was clearly wrong and decided that 2 bags were needed – they were on sale after all. It was after one bite of the first orange, ‘marshmallowy’ classic that she declared they were disgusting. I resisted my urge to gloat and tell her ‘I told you so!’ Instead, I just laughed.  Side note: if anyone wants 2 bags of Circus Peanuts – one opened, but still contains all but 2 ‘peanuts’ – let me know.

Speaking of sugary orange things… I also had a fondness for orange soda when I was young. So did my friend (different friend) and we took a couple of bottles to the playground with us. We thought we were pretty cool, sitting in the park drinking Orange Soda – which honestly tastes only vaguely like oranges and more like orange colored, bubbly sugar-water IMHO. Then we decided to go on the merry-go-round – not the kind with the horses, but the metal spinny kind that is powered by hanging on and running around to get it going before you jump on to enjoy the rapid whirly spin. Well, turns out that spinning in circles and orange soda don’t mix well for my friend. Up it came and I’ve never been able to drink Orange Soda since.

We’ve all probably had experiences like these that have destroyed our memories or experiences with favorite childhood treats. But there are others that we might look back upon fondly. BUT what if you tried them today? Would they be exactly like you remember? Or would you find them to be disgusting after your palate has matured over the years?

My son and I watched a series of videos about Americans trying junk food or local delicacies from around the world. It was an interesting way to kill an hour. Some were quite funny, some weren’t. But, I digress. One of these videos had the cast of characters trying their favorite childhood junk foods. Between the Circus Peanut Hunt of 2014, memories of Orange Soda vomit, and this series of videos I got to thinking…

We discussed it at dinner last night and discovered that our favorite childhood treats were the ones created and carefully prepared by our mothers and grandmothers (not to be sexist – that’s just who prepared them in our families). Peanut butter, rice crispy treats with a layer of chocolate on top. Corn Flake candy (corn flakes and chocolate.) Peanut butter balls dipped in chocolate. Apricot-coconut cookies. Ground raisin, oatmeal cookies. Strawberry rhubarb sauce. The list could go on and on. Disclaimer: both our mothers and grandmothers were from Minnesota – the land of delicious home made treats filled with love…and chocolate…and peanut butter.

We also discovered that some of our favorite (not home-baked) treats had special meaning to us or brought back fond memories of family, friends or first experiences.

What are some childhood treats or junk food do you recall and have you tried them recently?

We’ll be waiting for your replies while we’re making Corn Flake candy after school today.

 

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.

mommebaby mommeteen

momlucia   momciame

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:

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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.

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

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

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

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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

Every Day Moments

When the holidays come around, you’re likely to see some people you haven’t seen in a while. Even if they have some insight into how you’re doing through friends, posts, the general grapevine, they sometimes tread carefully. It means they look at you, searching for the ‘real’ clues of your condition. It means they ask how you’re doing, sometimes with a voice that’s tinged in pity and a touch of condescendence – desperately trying to make it come off as empathy. I understand that it’s hard to talk to a person with an often terminal brain tumor, so I don’t mean to be unkind.

You have gotten caught up in the bustle of the holidays and living every day life with your family, trying not to let the thoughts of ‘when will it come back?’ hover over you, pushing out the enjoyment of the moments. Sometimes the questions about your health catch you off guard.

When there’s nothing much going on health wise, you try to skip the details of living with short-term memory loss, the monthly vaccine trial shots, the need for naps when the activity gets to be too much. You skip the fact that your hair is nearly evened out (meaning the hair that grew back after your random baldness is almost the length of your other hair), or that you’re done ramping up on your new seizure medications and you live every day doing what you need to so you don’t have another life threatening ‘episode.’ You skip the fact that your children are showing their anxiety, even in the excitement of Christmas. The kids ask if they’re going to get sick like the kids they saw on the St. Jude’s ad on TV. They ask about things that people have said in front of them, thoughtlessly forgetting that kids hear every word they say, even if they don’t LOOK like they’re listening. They avoid books in which one parent has died.

So I’ll  just answer ‘I’m doing great!’ If they continue to look at you like, ‘No, really, how ARE you?’ I’ll throw in a ‘the tumor hasn’t returned yet.’ They still stare, expecting more details. Details that I’m tired of sharing and don’t want to share now, at this party I’m enjoying. I don’t want them harshing my mellow, as it were. So, I answer, ‘Well, I’m still alive, so I’ve got that going for me. Which is nice.’ I appreciate the interest in my health, really, but please take the cues. I’m taking the opportunity to live my life ‘normally’, don’t take that away from me. It can all change in a heartbeat, so let me enjoy my very fortunate string of Between Days. Let me enjoy the beautiful moments I’m lucky to have every day while I’m still fighting to be legendary.

Beautiful moments of happiness. You too can have them if you stop and appreciate the world around you.

Cigars Are Nasty Gross

We went to a lovely outdoor mall the other night on our way to a family dinner. The Christmas decorations and lights were up and we were strolling along enjoying the view. Then the first cigar arrived. Then the second. Then the third…as we approached the Cigar Bar.

I’m sorry if you like cigars. But I think they are nasty gross. They make me ill. Not just ‘ew, that stinks’ ill. Serious full on headache, nauseous ill that lasts long after I’ve escaped the cigar smoke. I know there are some people who LOVE the smell of a cigar, and clearly enough to smoke the nasty things. While it’s unfathomable to me that everyone doesn’t hate the smell, I understand that sensitivity to smell is a fickle thing.

Sometimes my sensitivity to smell is a blessing, sometimes it’s a curse. Some smells trigger a headache immediately, while others soothe or bring up fond memories. I know this isn’t uncommon, but I find it interesting that my triggers are often very different from other people’s. I know that some smells are linked with an experience – positive or negative – you’ve had. The same is true for flavors, which is why I can’t drink rum. But I digress…

Our dog managed to eat the cat food recently – never having showed interest before, we didn’t think there was much danger. He has a gluten sensitivity and with anything you stop eating for a while (milk, meat, etc..), once you eat it again, it’s going to upset your tummy. Let’s just say that crate training and the after effects of a gluten sensitive dog chowing down on non-gluten free cat food = poop, and lots of it. The associated cleaning experience was unpleasant at best and the smell stuck to me like super glue – even after a long, hot shower. Everyone would hate this smell (and if you wouldn’t, keep it to yourself), but if I made a list of smells I hate and smells I love, I bet it would be different from your lists. So, here are mine…

Smells that trigger headaches or nausea:

  • Garret Station pizza – warmed up leftovers smell almost exactly like the poop. Will never, ever eat there. (sorry if you’re a fan)
  • 99.9% of perfumes & cologne or scented anything – candles, air fresheners, laundry soap, lotions…
  • Cinnamon scented anything – I can eat cinnamon rolls or bread, but just like banana flavored candy tastes nothing like bananas, cinnamon scented things smell nothing like cinnamon and are evil, wicked things.
  • Spearmint – gum, tea, shampoo – doesn’t matter what it is, if it smells of spearmint it’s on my list.
  • Whatever toxin they use to dry flowers – between the cinnamon scented evil and toxic dried flowers, craft stores (like Michael’s) are a horrible experience for me this time of year.
  • Oh, and did I mention cigars?

Smells that make me happy:

  • Lavender in any shape, variety or form
  • Orange blossoms, cherry blossoms, almond blossoms…and night blooming jasmine – from a distance
  • Coppertone suntan lotion (note the ‘suntan’ vs. ‘sunscreen’ – shows how long ago this smell settled itself in my memory) – distinct and unmistakable, it reminds me of trips to the beach in my youth.
  • Freshly mowed grass – I’m not allergic, so I’m lucky.
  • Saw dust – reminds me of my dad building things.
  • Rain – specifically wet concrete right after the rain begins.
  • A certain weed/plant that smells like my grandparent’s farm. Not sure what it is, but every once in a while, I smell it and I’m right back there with my cousins, playing in the barn, throwing a ball over a shed or walking with my grandma to pick wild blueberries or raspberries.

What smells would be on your naughty or nice lists? Or are you completely smell indifferent?