Life Continues to Happen

While we wait (happily hoping it will be a long time, but always on alert) for other things to happen with my brain, we’ve been out living our lives. Traveling always produces some anxiety – remembering medications and calculating any needed adjustments, packing for kids and dog, locating the closest hospital at our destination, did I remember my bathing suit. Managing that anxiety while staying enthusiastic about a trip is a balancing act that requires list making and delegation of responsibility. For instance, the kids packed their own bags with guidance from a list I made for them on what to pack. I did a quick check to make sure they packed underwear and more than one shirt, then moved on to other things.

We took a trip to Southern California to have Thanksgiving with my family. It was the first time we’ve been there in over a year. My brother and his family were there as well, so it was good family time. We ate too much and had some much needed Sauna time. For those of you who don’t know, I’m half Finnish and Sauna (pronounced Sow-na, not Saw-na) time is essential to keep our Finnish genes happy. The kids earned their provisional Finnish cards this trip by staying in the Sauna for more than 2 minutes and then getting into the freezing cold pool. With 6 adults and 5 kids in the house, the noise and chaos was exhausting at times – I needed a nap every day to rest my brain and avoid the possible triggering of a seizure. It’s amazing how aware you become of your level of energy, the over-stimulation, a regular eating schedule when you know you could have a seizure and ruin everyone’s day.

Legoland has been on our son’s wish list for some time, so we took the opportunity to pay it a visit. The models made of Legos were amazing. That’s all I’ll say other than our son was happy – which was the whole point of going.

We also picked up our newest family member – a tortoise. Thank you to my parents for being foster parents until we could pick him/her up. Much debate was had about what to name him/her – made challenging due to the fact that we won’t know if it’s a him or a her for some time yet. Ultimately, we agreed that his/her name is Charlie. Other names that were in the running were Olie, Tomato Jack, Bob, Tumu (which is a Native American name that means ‘Deer who is thinking about eating wild onions’) and Mr. T (my dad’s vote and he swore he could find gold chains small enough for a tiny tortoise.) His/her name is really ‘Inigo Montoya, you killed my father, prepare to die’, but we call him/her Charlie for short. He’s settled in and managing to stay warm in this cold front moving through California.

We realized as we drove the 6.5 hours down and 6.5 hours back (a good time, by the way, requiring only a slight amount of exceeding the speed limit) that our children’s limit in the car is about 4.5 – 5 hours max, even with snacks and entertainment options provided. Those last couple hours were brutal for us all. We will plan accordingly before the next road trip.

Ultimately, it was a good trip and passed more quickly than we expected. We look forward to more family time soon.

A Day Off

In celebration of all of the veterans who have served and sacrificed for our country, my kids had the day off from school yesterday.

Since I can’t drive at the moment, we had to find things to do around the house & neighborhood. We decided on a photo safari, making art, cooking and reading books. Sounds like a pretty awesome day to me!

We went on our photo safari and looked for fall colors, interesting textures, and other cool things we found along the way. There’s a construction site a few blocks away, which was one of those cool things we found. The dog found a squirrel, which was another cool thing…for him.

Here are a few of the photos we took on our safari:

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We experimented with melted crayon art. My son wants a HUGE canvas to paint a masterpiece, but I couldn’t figure out how to get 3 of us to the art store and then get that huge canvas back home again…on bikes. So, we compromised with a small canvas and a few crayons. I didn’t really think through the physics of using crayons and a hair dryer to make a work of art. But we managed to improvise and came up with something worthy of a gallery – even if it’s our home gallery. A little clean up with a broom and sponge, you couldn’t even tell that the first and second methods to make our ‘painting’ created an enormous mess – inside the house. Here’s what we made:

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The book of the week was “The One and Only Ivan” – now read by both me and my daughter. Easy and wonderful read. We also read the fourth Stink book – “Stink and The Great Guinea Pig Express” with my son. But the favorite read of the day were old National Geographic Kids and Highlights magazines.

The cooking was left to me, because of some pressing ‘makeover’ activities. I had to promise not to post pictures of said makeovers. So, left to my own culinary devices, I modified a recommendation by the kid supposed to be helping me make dinner. My Chili Mac & ‘Cheese’ was a hit and we had just enough left for Tuesday lunches.

Along with a rousing game of ‘2 minutes 10’ – which involves coming up with a list of things in a given category in under 2 minutes, which we shortened to 1 minute (easy if you’re the first one to go, less easy if you’re second or third) – we had a pretty great day. The kids were amiable most of the day and I think we made some memories along the way.

While we may not have made it to a Veteran’s Day parade, we appreciate our veterans immeasurably, especially our family members and friends who have served. While we enjoyed having the day off, we believe you deserve to be celebrated every day. Thank you.

Knitting Lessons, The Sequel

This weekend, I revisited knitting lessons with my daughter. I first attempted them in the summer of 2012 and discovered that neither of us had the patience for it. I asked if she wanted to try again and her response was, ‘kind of, but you’re just going to get mad at me again.’ Oh boy, time to swallow my pride. I admitted that I was less than patient with her, but I felt that I’d do better this time. She agreed to try again and the lessons began.

During our first lesson (this time), she learned how to cast on and count stitches. She had the sense to start easy and make a scarf. I had the patience to explain it and show her with my own needles and yarn repeatedly, without snapping whenever things went sideways. I explained that it takes practice and there will be times that she’ll just have to start over – as I, and most knitters, have done many times. After some trial and error, she got it down. She decided how wide her scarf will be and got enough stitches cast on to start the next step.

I showed her how to hold the yarn and do a basic knit stitch. I explained that there are 2 ways to hold the yarn and the way I learned has its issues. She may go visit our neighbor to get a lesson in the other (probably better) way. That’s as far as we got, but it was further than the first attempt.

I’d love it if she learned to knit because it’s something she’d have in common with me, her Nana, and our neighbor, not to mention a few of our friends. It’s a skill that used to be a given for children to learn – girls AND boys. Perhaps less critical a life skill than it used to be (given the general availability of socks), it is still a very valuable skill to develop. It exercises fine motor skills, hand-eye coordination, concentration, creativity, and generosity – since a knitter is likely to make gifts for others. It’s a skill she can continue to hone as she grows and offers the satisfaction of accomplishment with every project finished.

I’ll keep offering lessons and demonstrating my ability to be patient. I’ll continue to encourage her through her triumphs and mistakes, showing her the extremely awkward and probably quite humorous way I held my needles when I started my first project. She’ll hopefully see that she’s already further ahead than I was at this stage in the learning process. She’ll also learn that I have limits to my knitting prowess, which will likely motivate her to improve beyond me so that she can become the teacher and I, the student.

Perhaps my son will want to learn too.

We’re Walkin’ Here!!

I thought I better write about something non-brain cancer related lest you all think it’s taking over the rest of my life given my latest writing.

Since I’m not driving and scooters are exhausting after more than a couple blocks, we’ve been walking home from school. There has been only minor whining from the kids – mostly about how heavy their backpacks are or the weather (which is perfect). But I love these walks home and we’ll continue to walk home until the weather turns ugly. Then we’ll adjust.

The dog gets a nice long walk and IF we see any squirrels, he’s as happy as a squirrel loving/hating dog can be.

My son and I love stepping on the fall leaves to hear them crunch. We can count all of the different colors falling to the ground and discuss which ones make the best crunching sound. If you’ve never taken a walk and stepped on the fall leaves, I highly suggest it. That crunching sound is very satisfying.

My daughter tells me all about her day in much greater detail than ‘it was good.’ I get to hear the latest escapades and social drama in the fifth grade set. Occasionally, I get to hear the latest story she’s made up or an idea she’s got stewing in her head.

I get my exercise (two miles round trip) and fresh air for the day. I’m reminded that I’m alive and doing well. It gives me time to forget about my brain and focus on the beauty of fall.

Most importantly it’s one mile of greatness with my children every day.

 

The Alternative Anniversary

My mother-in-law thinks that we should be celebrating my one year anniversary today since it’s been one year since my tumor was removed (instead of discovered). Who am I to argue with that?! Any excuse for a party.

I said most of what I wanted to say about surviving a year after diagnosis in my last post, so to commemorate this alternative anniversary, I’ll focus on some of the highlights of the week I spent at Stanford after learning about the ‘beast’ and my experience (though perhaps vague) with brain surgery. It’s interesting what I remember when I look back a year later. The people who cared for me stand out the most – probably because they helped me feel strong, safe, and reassured that I was going to be fine. It never occurred to me during that week that I wasn’t going to be fine, that something could have gone terribly wrong, that I could have died. But maybe it was just the drugs they pumped into me during my stay…who knows.

Coincidentally, today is Brain Tumor Thursday (as is every Thursday.) The social media community of brain tumor survivors, caregivers, and loved ones post information about brain tumors (benign or malignant), research, treatment, facts and personal experiences. We’re trying to educate and raise awareness while offering support for each other. It’s an uphill battle, though – we don’t yet have major sponsorship or color campaigns even though brain tumors can often be more deadly and devastating to those who have them than other kinds of tumors/cancer (I’m not belittling the need for awareness and funding for other types of cancer, just observing the disparity in research, funding and awareness.)  #BrainTumorThursday, #btsm

One year ago TODAY, I had a craniotomy. In a million years, I’d never have imagined that someone would drill holes in and take a saw to my skull to be able to remove a clump of unwelcome cells from my brain (~4 cm worth of cells, to be moderately precise.)

While the days between Oct. 7 and Oct. 10 of 2012 are a little foggy – thanks to postictal haze, drugs, and that unwelcome mass pushing from my left frontal lobe into my right frontal lobe, here’s what I remember…

Hospital food – as a vegan, options are limited and are usually Indian oriented. I say ‘oriented’ because they claim this food was Indian, but it barely resembled the delicious food my Indian friends cook. This is where my weight loss began and even if I LOVED being in the hospital otherwise, the food would have motivated me to do what I needed to be released.

Nurse rotation – we had some amazing nurses taking care of us. I must have had my vital signs taken a thousand times during my stay at Stanford that week. Not to mention the blood draws, the MRIs, the CAT scans…and probably a few other things I don’t remember. But the nurses were amazing – all of them, even though they had to wake me up every couple of hours to make sure I was still breathing, didn’t have a fever, and that my blood pressure was still normally low. They also gave me some lovely drugs, so there was that bonus.

TV and Movies – during the down time while we waited for surgery, we watched a lot of TV and movies. As an example of my mental fog, I remember starting to watch Rango, but I don’t remember actually watching it (though my husband tells me I was awake and alert). This is in no way a review of the movie, I promise.

IV lines – I had at least a dozen over that week for various reasons and they left bruises. The worst, however, was the arterial line placed just before my surgery by a resident anesthesiologist.  It took a few attempts, hurt like a bitch, and left a bruise that lasted for weeks. They said my face would bruise badly, surprisingly it didn’t…but that arterial line bruise more than made up for it.

Blood – If you aren’t aware, your scalp will bleed profusely when cut. I had a 6 inch incision – from above my left ear to the top of my head – and my face was pulled back from my skull during surgery. Gross, but true. Well, turns out that bleeds a LOT. I came out of surgery with ~35 stitches and hair crusty with blood. I looked like a macabre medusa. I don’t think anyone took a picture…sorry. I don’t think anyone wanted to remember. One of those awesome nurses I mentioned helped to wash that blood out of my hair BEFORE my kids came to see me after I left the ICU. I am forever grateful to her for helping to spare my children from that image of their mom. Aside from my blood covered head, to give you an idea of the quantity of blood ‘donated’ during surgery, I was swabbing it out of my left ear for weeks after surgery.

Doctors, specialists, residents, medical students – Stanford is a teaching hospital, which means I was a learning opportunity. Rounds – morning, noon and evening – included a gaggle of people. You get used to repeating yourself and losing all sense of privacy – lying in a hospital bed in front of 5-10 people asking questions, looking at me as though I weren’t really there. One of the residents who DID notice I was there and was incredibly kind was responsible for shaving little spots on my head to attach lifesaver like stickers that would help in the MRI guided surgery. He did way more, I’m sure, but that’s what I remember him doing…coming in with a razor and ushering in my year of weird hair.

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The Operating Room – Again – amazing nurses. The OR was FREEZING. Even with a sedative, the panic started to set in once I was wheeled into the OR. The nurse got me 2-3 more warm blankets (one benefit of hospitals is they keep blankets in a warmer) and sat close, holding my hand and talking in a calm, reassuring voice until I was sleeping, oblivious to the drills, saws and scalpels. Unlike so many neurosurgery patients, I didn’t need to be awake for surgery (thank goodness.) 4ish hours later it was over and I was taken to the ICU to recover.

ICU – Coming to out of anesthesia can be an unpleasant experience if you’ve never done it. This time, however, wasn’t so bad – probably because I was happily drugged up for the pain. I remember opening my eyes, and seeing a nurse at another patient’s bed – she smiled at me and gave me a little wave. That was it. That smile and wave will forever be etched in my brain – I was alive and well. If I wasn’t, she would have been in my face and certainly not smiling. She also bent the rules a little to allow my husband to stay with me and let me sleep for longer periods of time.

The next morning I was moved back to a regular room – I lucked out with private rooms my whole staycation at Stanford, which meant I had some level of privacy and quiet, allowing me to sleep better and recover faster. There were more tests, more doctors, residents, students and nurses. There was more bad hospital food, flowers from loved ones, short visits from family and close friends, and slow walks around the ward in my desperate attempt to prove I was well enough to get the hell out of there – which I did on Oct. 12.

But before we left, we were told that I had a stage 4 Glioblastoma Multiforme of the giant cell variety. The neurosurgeon said he felt confident he got it all, but there were no guarantees because it was not encapsulated. I would require radiation and chemotherapy and we met my Neuro-oncologist for the first time. We officially entered the world of brain cancer – but didn’t fully get just how serious it was until our post-surgery appointment with the neurosurgeon when he told me this tumor would likely come back and would kill me – it was just a matter of when. Well, I’m not dead yet and I’m still fighting like mad.

Given all that could have gone wrong that week and after, I really was very lucky. I had no post-operative complications or infections. I didn’t have any reactions to medication (until later). I didn’t have any major physical disabilities occur because of the tumor or surgery. Most importantly, I had a strong advocate by my side at all times and an incredible team of nurses and doctors taking care of me.

That tumor has yet to return and with any luck, I won’t have to repeat this experience ever again.

I think my mother-in-law is right – this alternative anniversary is also a day worth celebrating.

More Memories, Less Stuff

Today, we dove into the mighty task of cleaning our garage. Here are some things I learned:

1. NO ONE needs that many rags. NO ONE!

2. Don’t collect so much crap to begin with and you’ll have less to clean in the end.

3. If you haven’t used it in 6 months or more, you clearly don’t need it. Get rid of it, it’s just taking up space.

4. It can be hard to let things go, but remember, it’s just stuff. Be ruthless in your culling of that stuff. The memories are more important.

5. The kids will play more and clean less. Don’t try to force it, it’s an exercise in futility. Give them small tasks, a game to play, or send them to the neighbors to paint pumpkins to keep them busy while you work.

6. One (or more) of those kids will try to sneak stuff back into the garage. They’ll do it with tears in their eyes (as an attempt at a sympathy win) – even if what they’re trying to sneak back in hasn’t been looked at by them in 3+ years, is broken in 3 places, or is missing half of the necessary pieces.

7. If you’ve decided to get rid of something do NOT put it back in the garage. Take it straight to Goodwill and collect a donation receipt. Garage sales and/or Craigs List require a lot of work and if you’re not desperate for money, are rarely worth the effort.

8. Stay hydrated and stop for snacks, dog walks, visiting with neighbors and rides around the block on your bikes. Make an umbrella fort, draw a sidewalk chalk masterpiece, move some stuff around with the hand truck just because.

9. Try on old costumes while you hang a few Halloween decorations. Just be careful not to trip on the hem of that evening dress.

10. Relish your accomplishment, even if  you didn’t get it ALL done. You can always tackle the rest of it another day. Getting rid of the stuff collecting dust is quite liberating, but it’s exhausting and dirty.

We cleaned most of the day. We actually sold a few things to people driving past to the yard sale down the street. Our garage is 80% more organized, the floors have been swept, and I can almost do a spin in the laundry area.  It’s pretty awesome, and I can guarantee I’ll never regret getting rid of the clutter.

Some of you may be perpetually neat and organized. We are not. This is a big deal in our household and it felt great to tackle this monumental task.

There were very few thoughts of cancer or epilepsy. Just a normal day in a normal family’s life.

Tomorrow we play.

It’s A Platelet Miracle…OK, Not Really

I drove to Stanford today to visit the vampires. It took me 5 times longer to drive there than to have my blood drawn. I got stuck behind a newbie to the Cancer Center and had to patiently wait while he figured out how the valet parking worked – stopping to ask the attendants along the way from one side of the driveway to the other. I took a deep breath and tried to understand the anxiety and confusion he must be feeling.  No one wants to visit the Cancer Center, let alone deal with weird parking practices while the new hospital is under construction. I’ve been at it a lot longer and have had time to sort it all out, expecting the chaos and backup and friendly attendants patiently directing confused drivers every day, all day long.  But I digress from my minor ‘miracle’…

Drum roll, please.

My count is up to 111. Ok, not so miraculous (reminder that the lowest end of ‘normal’ is 150), but it’s over 100. Technically, that means I can start my next, and possibly last, round of chemo this weekend. I’m still waiting for the Dr. to give me the go ahead before it’s set in stone, however.

I’m starting to embrace the idea of not putting toxins into my body each month (or so.) Not having chemo brain might be kind of awesome – I may write more, sew more, cook more…create more in general. I’ll have more energy, less fatigue. I’ll think more clearly and perhaps spend less time retracing my steps trying to remember why I went into one room or another, only to forget I was retracing my steps when I walk into the original room. I’m thinking I’ll have to rewash at least 50% less loads of laundry I’ve forgotten in the washing machine. Maybe I’ll even be able to sit in a restaurant with ambient noise AND music and not get exhausted in 30 minutes!  Maybe I can’t blame the chemo on all of my issues – the tumor, cancer, a craniotomy, months of treatment, and some of my own high levels of distractibility should take some of the blame I suppose. But, I can’t help think that there may be more days of productivity and inspiration ahead.

Today, I saw more stories of survival than loss. The skies were blue and the sun was warm. We got the chance to visit with new friends from the Northeast. The dog met new doggy friends and saw a few squirrels. The kids got along surprisingly well, even with an abundance of energy.  I had a lovely date with my husband last night (I know, not technically today, but let it slide, ok?)

All in all, it was a good day.

 

New Life

We had a wild game of tree trimming on our block this week.  Here are the rules:

One neighbor decides to trim their trees and calls a bunch of tree guys to get quotes.  She tells us who she selected (based on price, reviews, and interviews) and we all hire him to trim our trees as well.  All in all, it’s a win-win for everyone.  He got 4 jobs in one day and we all have safer, healthier trees.  We really must bake something for the neighbor that did all the leg work for the lazy neighbors (the rest of us).

One thing about trimming trees this time of year is that there are some hazards to the wild things. We’re pretty sure the casualties were few, but there was one nest that created some buzz about what newborn squirrels can ‘eat’, where the nest should be placed to increase the chances of Mama Squirrel finding her babies, how long they could survive without her and what should be done with those babies if Mama Squirrel should not return.

Some people will find the video I’m posting below ‘freaky’ because the squirrel babies look very different from their fluffy tailed, cute grown up counterparts. I am not squeamish about naked mammal babies, however, having had some experience with raising rats. That was an unplanned adventure in rat husbandry after we found out one of my rats was not a Eugene, but a Eugenia. But I digress…

It’s not often you get to see baby wild things and we’ve had some great views into new wild life this year with finch nests, hummingbird nests, and now a recovered squirrel nest.

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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Mortality vs. Invincibility

It’s a part of the roller-coaster ride of brain cancer…feeling your mortality vividly in every cell of your body one day and then completely forgetting you’re fighting a likely deadly illness the next. (Remember: ‘We know how you’re going to die, we just don’t know when’)

When I feel my mortality: I avoid commitments further than 12 weeks in the future. I think it would be silly to buy new shoes. I take therapeutic yoga classes because I need to move, but don’t have energy for more. I ignore the messes piling up around me. I smile at the wonder of small things. I cry harder at the tragedy of loss – or Hallmark commercials. I feel less motivated to do, to be – recklessly forgetting that I have interests, hobbies, friends. I crawl into my shell a little deeper, building a wall against the fear – unconsciously preparing others for the inevitability of my absence. I selfishly savor every breath, every moment of quiet, every touch of my family, every word spoken, every word read.

On the days when I forget about the beast, I feel invincible. I think more clearly. I find more inspiration in every moment, every interaction, every ray of sunshine or drop of rain. I plan for the things I can do with my officially unemployed time – volunteering, writing, making and maybe even earning. I dream of trips yet to be taken, experiences yet to be had. I make lists of books that NEED to be read. I drink a cocktail with a giant ice cube. I anxiously await the release of a movie or show I want to see – next year. I walk taller and quicker and believe I can go to a regular yoga class attended by people my own age. I clean, do laundry and garden with efficiency. I think the callouses on my heels are a big issue that needs addressing – promptly. I spend my time imagining the endless possibilities and conjuring up grand ideas. I selfishly savor every breath, every moment of quiet, every touch of my family, every word spoken, every word read.