The Same, But Different – United We Stand With Our Tumors

When I was first diagnosed with brain cancer, lots of people suggested support groups. I cringed at the idea (based on my own avoidance of ‘joining’, rather than personal negative experience). But as I cringed, I simultaneously wondered what other people with brain cancer experienced. Entering the world of social media and starting this blog I’ve connected with people who are survivors, caregivers, advocates, and researchers. Through those connections I’ve met some amazing people and have learned a lot. But I feel like I still remain on the fringe. I’ve spent a lot of time thinking about why I’ve been so reluctant to join a support group – traditional or virtual – or become a more active advocate for brain tumor research funding.

I heard someone once describe attending a traditional brain cancer support group and realizing that they had NOTHING other than a tumor in common with anyone else in attendance. They got very little value out of the experience. Everyone was older, more debilitated, more pessimistic, more ‘terminal.’ Just…more.

As I read more about gliomas (mine was, and could be again, a Glioblastoma Multiforme – Giant Cell Variety. Super Size me!) and other types of brain tumors, I realized that every one of our experiences is unique to each of us. It depends on what kind of tumor we have/had. The number of different types of tumors is astonishing as is the wide range of people afflicted with them – brain tumors are broad and indiscriminate. Where our tumor is/was located in our brain determines what symptoms we had prior to diagnosis and which symptoms we still have or develop after surgery and/or treatment. Some of us suffer from seizures, some don’t. Some have minor to severe motor control challenges, with or without pain. Some have short-term memory loss. Some have complex and frustrating speech difficulties – unable to get the words from our minds to our mouths or our fingertips.

Our experience also depends on whether the surgeon was able to remove a percentage, all, or none of the tumor. What treatment program we’re on and how our bodies react to radiation, chemotherapy, and other medications plays a significant role in our experience. Two people can have EXACTLY the same treatment – doses and all – and have completely different side effects. A big factor is also what our general state of health was before diagnosis – in all manners of the word ‘health’, mental and physical, including our age at diagnosis or recurrence.

Our spiritual beliefs and social support systems and how they bolster our strength, or deplete it, significantly impacts our resilience and optimism. What information we were told, or found, about survival statistics and how effective we were at pushing those statistics into the dark recesses of our traumatized minds if our tumors were malignant and ‘advanced’. So many variables impact our individual experience that very few of us have multiple elements in common through those experiences.

Even with all of those differences, we all have one big thing in common – brain tumors. But we also have fear, anxiety, treatment plans, MRIs, and with any luck, hope.

If I spend too much time on the various social media outlets for brain tumor fighters – just browsing resources for information – I hear more stories of loss than of survival. Even knowing that I’m doing well and have a good chance of becoming legendary, I still know in the back of my mind that the tumor could come back and render me mute, make me incapable of making short-term memories, or kill me at any point. Each time I read a story of someone else who was surviving and leading a vibrant life suddenly losing their battle with the beast, I have to fight not to curl into a ball and cry for all the hope that was just sucked out of me. I need to hear stories of survival so that I continue to believe that long-term survival is possible and I WILL be legendary in my survival, that I WILL be around to see my children grow up.

When I think about support groups or being an active advocate for brain tumor research, I realize that we can all find something that helps to keep us moving forward, fighting the fight and finding camaraderie in our unique and common experiences. Yet, I’m still reluctant to fully join in. I’ve learned that I want to live as much of my life as possible with cancer being a sidebar rather than a headline – while I still can. I don’t want my brain tumor or the experiences of others or the fight for this drastically underfunded area of tumor/cancer research to take over my life. I want to put as much of my energy as I can into my children, my husband, my extended family, my friends and my pets. I’ll continue to write and speak to my experiences – my own version of therapy – and participate in the brain tumor community (the fact that there IS a community is still somewhat hard to absorb) on my own terms… for now. Everyone has to find what works for them and I know I’m not alone in my conflict to balance my desire to connect and my fear of being consumed by support groups, advocacy and social media. #btsm.

Wishes For My Daughter

My daughter turned 10 years old this week. It feels like a big milestone, she’s more independent, more mature, more attitude-prone.

I’d really like to be around for the next decade, or two, or three of her life to see her reach those milestones every child (because they’re always YOUR child) reaches on their journey in the world. I’d like to be there for the moments that she smiles bigger than ever, her heart bursting with joy.  I’d like to be there for the moments when she needs a mother more than anything – to tell me her fears, secrets, dreams, and wishes – just to hold her hand or hug her or encourage her to carry on because ‘this too, shall pass.’ I’d trade anything to just be there. With any luck, I will be.

She’ll make new friends and lose old friends, discovering what true friendship means and how valuable friends are in life. She’ll have first crushes, first boyfriends and have her heart soar and then broken. She’ll love unabashedly and find someone to love her unabashedly back. She’ll have adventures and mis-adventures. She’ll make mistakes and learn from most of them. She’ll read a million books and get lost in every one, going back to her favorites when she needs an escape. She’ll create – words, art, music – whatever inspires her soul. She’ll care for others and hopefully let others care for her. She’ll discover who she is as a person in this world, hopefully always being true to herself and celebrating her uniqueness.

Sometimes we disagree. Sometimes she drives me to tears. Sometimes she reminds me too much of myself. Sometimes I feel like a competent parent and other times a total failure. But she’s beautiful and strong-willed and I love her so much my heart will burst. No one said it was easy – parenting is hard and messy and a series of trial and error, but it’s the greatest job in the world.

I wish that I could easily find the words to teach her the lessons I hope she’ll learn along the way to becoming the strong, confident, compassionate, and loving woman I know she’ll be. I feel a little fraudulent sharing ‘words of wisdom’ using the words of others, but sometimes others find the right words for the wishes and thoughts that are hiding in my heart. One day soon (a dangerous promise in the world of GBM), I’ll start that journal I bought for her and use my own words – hopefully I’ll have enough courage to find them.

There are so many lessons to teach a daughter in a lifetime, but here are some that come to mind as she enters her second decade:

You will always be beautiful, inside and out – believe that you are and know that beauty comes from within

Live in a way that if anyone speaks badly of you, no one would believe it

Treat everyone with kindness and respect, even those who are rude to you – not because they are nice, but because you are

Don’t change so people will like you, be yourself and right people will love the real you

Creativity takes courage – never stop being courageous

Expect nothing and appreciate everything

Nobody’s perfect, accept others for who they are, the imperfections make them more interesting

Think too much and you’ll create a problem that wasn’t even there in the first place

Close your eyes, clear your heart, and let it go

If ever there is tomorrow when we’re not together…there is something you must always remember. You are braver than you believe, stronger than you seem and smarter than you think, but the most important thing is even if we’re apart…I’ll always be with you.

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The Dreaded Lunchbox

I know I’m not alone in this…I’ve heard some of you moms/dads express your joy at the end of the school year. Making interesting, healthy lunches every day all school year long is EXHAUSTING! Especially if you have 2 (or more) kids with different palates – one who refuses to eat ANY nutbutter, applesauce, most fruits/greens and the other who will eat anything as long as it’s only offered on alternate Tuesdays. We’re vegan, just to add to the challenge, and I’d like to send my kids to school with healthy, whole foods – rather than sugary, processed, packaged foods. And WHY is it that they’ll eat things so well at home, but if I put them in their lunch, they label them as ‘gross’?!!

All moms/dads start off with the best intentions at the beginning of the year to be creative, fun…almost adventurous – ‘the kids will eat it if it’s in cute little shapes!’ Then by the end of the year, we’re making the same sandwiches every day and throwing in a couple of pre-packaged snacks, knowing full well that apple we packed will be tossed in the trash, not eaten as we desperately hoped. The reality is that those cute little sandwiches or carefully organized/decorated bento lunches get destroyed the moment our child throws his/her lunchbox into a backpack and deposits it unceremoniously onto the pile of other backpacks the moment they arrive at school. Our efforts to rise extra early to bake fresh and tasty morsels for our little darlings have been abandoned for 10 more precious minutes of sleep. We’ve developed a chronic case of Lunchbox Fatigue.

So, the school year comes to a close and we do a little happy dance because it means that we’re done with the constant pressure of coming up with varied, creative lunches only to have them rejected day after day after day. But then we remember the kids will need to bring lunch with them to summer camp and we sit down and have a good cry.

To you moms/dads who have children who will eat anything or have the time/energy/skills to bake sneaky (i.e. super nutritious) delicious muffins or create artistic bento lunches – we hate you just a little.

Some examples of what we’re up against:

If I attempted ANY of these amazing sandwiches, I’m pretty sure they’d all look like balls of bread thrown up by the cat.

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This is ADORABLE now, but by lunchtime, it’s all one big crazy blend of food which resembles nothing like what you envisioned your child smiling at and devouring with joy, smugly thinking, ‘go ahead friends, be jealous…my mom is awesome’ and 75% of it ends up in the trash.

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THIS. IS. AWESOME. Question is – how could you destroy this work of art by eating it?!

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This is my children’s last week of camp for the summer. I will do a happy dance on Friday as I pack my last lunchbox – until the school year begins again. In the meantime, I will do my best to stockpile ideas, freeze individual portions of healthy somethings-0r-0ther, get over my baking aversion, and re-bolster my energy and enthusiasm for the Dreaded Exciting Lunchbox.

Summer 2013: Day 3

One child is losing teeth – 2 molars on one side – both of which she pulled herself. That huge gap is reminiscent of the dangers of scurvy or meth. And when did the Tooth Fairy get so flush with cash? I object on principle!

Ironically, as one child loses her baby molars, the other child’s are coming in. I’d forgotten how strange and confusing the sensation/pain of getting new teeth can be to a 6 year old.

We have 3 reasonably clean rooms – see ‘after’ picture for the most challenging room in previous post – I’m currently taking bets on how long they’ll last. Also, now the rest of the house looks like a mess. Our work here is not done.

I don’t HATE Taylor Swift, but I’d be happy not listening to her for at least a month.

Sibling Harmony has an inverse relationship with cabin fever and cleaning fatigue.

Car trouble – my car’s ‘get service soon’ light came on last week. How do I know HOW soon it needs service? Is it a ‘soon-ish’ request or is engine failure imminent?

One of the great(ish) things about a brown tabby is that there’s never a shortage of hijinx, but I’m pretty sure people are tired of me posting photos of her antics on Facebook. I’m thinking of starting a new blog – the Kaya Kronicles? Which immediately gets me singing the ‘Chronic-what-cles of Narnia’. Which makes me think we need to visit the library because my daughter really needs to read those books because they’re classics. Which makes me think about how I pay one city’s taxes while my address is another city. Which through a complicated series of opt-in and opt-out decisions between the city and county triggered the loss of my free access to the county’s public library and that makes me mad! The city library system is too spread out and they rarely have the books we go in to borrow. This causes most of our trips to the library to just end in disappointment. Wait…what was I talking about…?

Off To A Good Start

We’ve started Summer 2013.

Here are some highlights from the first few days:

1. Neighborhood driveway/front yard party season opening night was officially declared with a music jam and a broken glass. Sorry to the neighbors who weren’t participating.

2. We’ve watched 3 movies – Holes, Hoot, and Mr. Popper’s Penguins. Note the literary correlation.

3. Songs have been written – solo and collaboratively. Some of them are worthy of sharing with the world. Some are not. (They’re currently working on one that involves riding a fast horse)

4. There have been at least 3 shows written and performed by the kids and their friends.

5. A monorail has been built and played with for hours on end.

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6. A comprehensive, if only a little biased, list of pros and cons of dog ownership has been created. It’s a lesson in making a case, but unlikely to have a positive outcome – in spite of the enthusiasm and effort she’s putting into it.

7. Much time was spent in pajamas during daylight hours.

8. Operation ‘Sibling Summer Harmony’ began with a sibling sleepover (i.e. both kids in one room). They had a great time and so far, the harmony is holding…for now.

9. Breakfast was prepared independently – i.e. I was not a short order cook or waitress this morning.

10. There has only been minor resistance to our plans to thoroughly clean and purge bedrooms (including mine) before we do anything else. Results of this plan are definitely still pending – see photo.

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This is what happens when you stop nagging a 9-year-old to clean her room. The good news is that she’s tired of the lost items and the obstacle course and is embarrassed to have friends over. She’s a lovely, creative girl…who has yet to learn that keeping it clean is way easier than cleaning THIS up. If she’s like her mother, she’ll learn some time around 44 years old and will still put it off.

UPDATE:
It only took 2 days, some tears, some help from mom, and maybe a bribe…I mean incentive or 2, but she did it!!!

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Today: 6/6/2013

Today is the second to last day of school. My baby graduates from Kindergarten tomorrow. My other baby will be a 5th grader.

Today everyone is feeling good – no sign of tummy bugs and chemo has ‘left the building’.

Today, my eldest pulled out her own tooth – don’t worry, it was ready to come out. Hoping that her retainer will now fit again…

Today I start a new book – I’ve just finished ‘Don’t Let’s Go To The Dogs Tonight’ – and I’m looking forward to exploring all of my options and talking about them with friends.

Today I need to get some laundry done…and maybe pick up the house a bit.

Today I have officially resigned from my job after nearly 15 years at the company. No regrets.

Today I drive to Stanford to get my monthly vaccine shots. Right leg today. The Hulk(s) are frozen and ready.

Today I’ll try not to worry too much about what my MRI next Friday might show.

Today, we’ll eat a frozen treat after school, practice our breakdancing moves, and enjoy the warm weather.

The Vomitorium (WARNING: Queasiness May Occur)

Friday Fact: Contrary to what you might believe, there was no Roman room designed for the joy of vomiting – aka a Vomitorium. There WAS a part of the Roman colosseum called a vomitorium that was designed to get mass numbers of people in and out of the amphitheater quickly. I can’t say that none of those Romans ever vomited in the vomitorium, but we do know it wasn’t designed for that.

So, if not a vomitorium, we’ll simply call our house ‘the infirmary’ (my husband has suggested the ‘Castle of Puke’, but I vetoed that one.) The stomach bug I may or may not have brought home from NYC has attacked the rest of the family.

Another Friday Fact: The 24 hour stomach bug hits the 3rd, 4th, etc… harder than it hits the first person in the family.

Our eldest child got it second and bounced back like magic in less than 12 hours. Since she was the last to get it at Christmas time and was miserable the longest, I guess it’s only fair she got off easier this time around.

It hit our littlest one in the middle of the night. I won’t go into details, but he didn’t inform us he was ill and we were greeted with a mess this morning. Luckily my husband has a strong stomach and a kind heart – since he was the one to clean up. Our son is still feeling terrible and is on his second long nap of the day.

I found this blog post from 2011 that PERFECTLY describes what we’ve experienced this week. Since this bug seems to be making the rounds, I highly recommend reading it.

The Twelve* Stages of the 24hr Stomach Flu

Fingers crossed my husband’s cold is his only illness for the week, because he’d be fourth.

Personally, I’ve moved on from the stomach bug and am working diligently to fend off the chemo nausea. I lost that battle briefly, but seem to have things under control again for the moment.

School’s (Almost) Out For Summer!

We’re planning for summer. Camps, activities, trips, play dates…the usual summer stuff. I’m looking forward to not having to pack 2 lunches each day and sleeping in. Other things to look forward to: lazy hot days with popsicles and kiddie pools; beachy days with sand between our toes and if we’re lucky, a sea lion playing in the waves; trips to museums where new things are learned and experienced; trips to see family and friends to enjoy each other’s company and laugh at ridiculously silly things.

This summer will be different than the last, but hopefully not a bad different. I’ll have to figure out how to get quiet time to recharge – nap, write, read. I’ll have weeks where I’m sick and exhausted. I’ll have to remind myself to let go of some things on my long list of wishes. I’ll cherish each moment and try to look past those moments when they bicker at each other, as siblings do.

Last summer, I didn’t coordinate schedules very well. While it’s nice to have just one child at a time, it’s also nice to have no children just every once in awhile. This summer, I mixed it up a bit and will hopefully find there’s a nice balance between 1, 2 and no children (aka as extended nap days for mama). It would have been ideal to know my chemo schedule and plan ‘no children’ weeks concurrently. But alas, I can’t predict my chemo schedule that accurately. We’ll have to adjust and make do if they don’t align. I’ll need to find a babysitter for those days I have appointments or feel too ill to get out of bed…

The kids have started to make their wish list of things they’d like to do. I made a checklist of activities last year and we’ll update it with our new list for this summer. Much to their dismay, we’ll also be fitting in things like chores and errands – there’s nothing my children love more (or is it less?) than going to the grocery store and cleaning their rooms. Adding to that list of responsibilities this year, each child will be making dinner once a week – planning the menu, shopping, cooking. The oldest (and maybe the youngest) will also begin doing her own laundry from start to finish. They can write thank you notes for the new skills and independence they’ll develop to Kay Wills Wyma, author of Cleaning House: A Mom’s 12-Month Experiment to Rid Her Home of Youth Entitlement.

We took weekly trips to the library last year. My youngest would gravitate to the non-fiction area and clear out a section on a particular subject – marine mammals, trucks, insects… We learned a lot about Narwals and construction vehicles. This year, we’ll be working with him on independent reading. Every child typically has a book/series that sparks their passion for reading – hopefully we’ll find his this summer. My oldest would gravitate to the fiction area – searching in vain for the next book in her latest favorite series – usually not finding it and being ‘forced’ to try something new. It was a frustrating experience for her (and me). She’ll usually read anything she can get her hands on – as long as no one has TOLD her to read it. This year, I found a list from Scholastic for their summer reading challenge – I’ll print it out and give it to her so she can be ‘in control’ of what she reads – and we’ll try different, larger libraries that will hopefully have books from the list. There’s also a chance she’ll be joining a book club with some of her friends. Now if I can only get her to write more…

There will be new experiences – breakdancing and hip hop dance classes. We’ll be taking a break from some ongoing activities – gymnastics. We’ll be restarting old, loved activities – soccer and piano lessons. We’ll fill in the gaps as best we can to find the right balance for all of us so that in the end, we can say it was the best summer ever.

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This was our list from last year – we crossed each thing off with a dry erase marker as it was done.  We made it through almost everything on the list and some we did more than once.

How To Overdo It In 7 Easy Steps!

When I’m feeling good (even reasonably good), it’s easy for me to try to do too much. I want to do it all!  I don’t want to miss anything – what if I don’t get another opportunity? I feel I need to make up for all of the other things I missed this school year. Unfortunately, when I pack too many things into the calendar, I don’t often realize it until after I’ve already overdone it.

This last week has been incredibly busy and it’s caught up with me.

1. I chaperoned my daughter’s 4th grade field trip to a semi-local mission. It was an all (school) day trip and the wind was blowing, so allergies went haywire. I had a great group assigned to me and it was fun, but it makes for a long day.

2. I had my monthly pre-chemo doctor appointment – which I wrote about before. Not a big deal, but it requires coordination of schedules and a big chunk of the day. Then there’s the post-appointment anxiety – which is slightly different from the pre-appointment anxiety.

3. I attended my children’s school’s Volunteer Tea (even if I was a crap room mom, apparently I was still considered a volunteer). It was not only a tea, but the 4th and 5th graders performed songs relating to this year’s theme. They did a great job and it made me really appreciate the music teacher at the school (that’s a whole other issue going on, but alas…)

4. I took 4 kids to and 5 kids from an end of year party for a program at school that teaches kids to help peers solve problems during recess. It’s been a great experience for my daughter and many of her friends. This party was at a miniature golf venue and I played with my son and his friend while the girls were partying. I was reminded why I hate golf, but the boys had fun. Somehow my husband got assigned to the BBQ, which he didn’t mind, but vegans aren’t typically the natural choice to assign to the task of cooking 60 beef hotdogs. I was in the arcade and it took about 45 seconds for me to beg to switch jobs with him. We used lots of soap and hand sanitizer that night.

5. We woke at 5:30 AM to get to the Girls on the Run 5K.  It was VERY early. All of the girls and their running buddies did a great job and had a lot of fun at the event. Our coach with a broken foot walked the race on crutches and many of the girls went back to ‘run’ her in after they finished. What a great team spirit they developed this year along with their lessons of empowerment and self-esteem! My son ran too and clearly demonstrated we have a runner in the family (finished his first 5K in 34 minutes). We need to find a running program for 6-year-old boys!

6. An after party at the pool followed the early morning 5K. Great socializing for both kids and parents alike. A great way to end the season and get them excited about doing it all again next year.

7. And finally another field trip – this time with the Kindergarten class to our beloved Happy Hollow – a San Jose institution. It involves a zoo, carnival type rides, a cheesy puppet show, and a massive playground.  It was a hot and very long day. I think the kids had a great time, which is what’s important.

This all happened on top of the regular routine things – helping in the classroom, practices, gymnastics, grocery store trips, laundry…  When I get exhausted, my short-term memory and my word finding get worse. My platelets are also still low, which means my energy levels were low to begin with.

While it was a lot of extra activity for me, I think the thing that made it exhausting was the social stimulation. Every one of those activities, which in and of themselves were fun and I have no regrets about any of it, required that I have conversations, monitor and engage children that were not my own, and process lots of sensory input at once. It was a great test for my limits – which have now been reached. It can be a little disconcerting to be reminded that you aren’t quite as capable of managing a chaotic schedule as you used to be. It’s easy to forget – when you’re feeling good – that you need breaks, you need some quiet time to recharge, and it’s ok to say ‘no’.

Today, I will enjoy the quiet in my house, take a walk, write, and maybe read some of my book. I won’t worry about how clean the house is and I may skip the planned grocery store trip – even though my parents are arriving for a visit today. They will love me regardless of whether I got around to making their bed.

I WILL however take my daughter to the orthodontist – since it was the one thing that got forgotten last week.

Hair And Itchiness Update

Hair: 

I got 4 inches cut off – but it’s still pretty tame (see picture below). After a little discussion, we decided the weight from a longer cut will be better until some of my shortest bits grow a little more. A 2 inch band of fuzz right in the middle takes a lot of volume away from already thin hair, so the more hair the better at the moment. It will also allow me to put it into a ponytail. I like it. I’ll go bolder next time. I may still do a streak of color, but my daughter tells me it would be too embarrassing if I chaperone her field trip with pink or purple hair. And that comment gave us clear indication that we’ve arrived at the next developmental stage in her life…the one where we’re just embarrassing. I suspect it will get worse before it gets better. Even as she gets extremely moody and figures out who she is in the world, I’ll love her with every ounce of my being. Every once in awhile, I may harmlessly embarrass her on purpose.

Itchiness: 

My vaccination appointment went well. It’s definitely more fun with company, though. The itchiness began and continued in waves throughout the weekend. The Hulk did his job commendably. Should be less itchy today. Of course, all this talk of being itchy is making me a little itchy. Apparently, I’m highly suggestible, even to myself.

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Here’s the view of my monthly vaccine appointment experience.  

I hope all of my (US based) friends and family who are blessed to be mothers had a great Mother’s Day yesterday. I know I did.

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