Iron Nan(a)

Many people remark on Karyn’s incredible strength. They talk about how amazing it is and how surprised they are that anyone could be so strong.

You know who isn’t surprised? Anyone who has met Karyn’s mom.

Mary Kantola, AKA WonderMom, AKA SuperNana.

I’d argue she’s from another world, except for the fact that she’s so damn human. Take that, Superman.

If you’re lucky enough to know her, you not only know what I’m talking about, you probably collect the comic books.

Hold onto those comics and keep them in good condition. They, like her, are priceless and only increasing in value.

 

 

Finding The Words

I’m not experiencing expressive aphasia (today). But sometimes I find it hard to say/write what’s in my heart and on my mind.

I’m afraid that I won’t find the right words to say all that’s in my heart to my husband and my children in time. I’m afraid that I won’t find words that will properly express my love for them – words that will help them feel that love forever and always, words that will tell them what I dream for their lives, words that will sink into their souls and wrap them with warmth when they need to be reassured, words that will help them remember and smile.

I’m afraid that if I do – if I find the courage to write in those journals I bought for them all – it will mean that I’m done.

But how could I possibly ever express all that I feel and wish for them – it would take a lifetime – so I’ll just keep writing and fighting and living.

What Do We Tell The Kids?

We have young kids – 6 and 9 (5 and 9 at the time of seizure, surgery, diagnosis, etc), so once we knew it was cancer and potentially bad, we debated long and hard about how much to tell the kids. There’s a fairly big gap in maturity between 5 and 9, so we had to think about what each child would be ready to hear and capable of understanding. Our kids are also very sensitive and worry – which seems a strange thing to say, but it’s true. Our son will leave the room if the music in a show (we’re talking PBS Kids or Disney here) changes and indicates suspense or emotion. He thinks Good Luck Charlie is scary. If you’ve never seen it, it’s not scary in the slightest. Our daughter has gotten less sensitive to peril in media as she’s gotten older, but she’s definitely a worrier. She’s a mini-me.

So, we were honest but limited on the details. They knew I had a tumor and was having brain surgery. They knew I was going to have to do treatment and we explained as best we could what chemo and radiation were. They witnessed my first seizure, so they received a brief lesson in seizures and what happens in the brain. Our neighbor found her children’s book on brains for them to look through. We explained as best as we could in terms they’d understand without over-sharing so that fear and worry prevent them being kids. We didn’t use the word ‘cancer’ outright because….well, what do YOU think of when you hear the word ‘cancer’? THAT’s why.

If you were in my situation, what would you tell your kids?  I don’t know when the tumor will come back, maybe it won’t.  If it comes back, maybe we can remove it or treat it.  Maybe it won’t create new, worse symptoms or long term side effects, but maybe it will.  Maybe I’ll be just another statistic in the world of a GBM4 patient, but maybe I’ll be legendary in my survival. But I’m not dying yet.  So, what would you tell your 5 and 9 year old? Would you tell them that this cancer is aggressive and commonly terminal, but we just don’t know when? Would you give them information that makes them so anxious that they start doing poorly in school, act out in fear and confusion, or spend their nights waking up from terrible dreams?

But on the other hand, you want to be honest and open. You want them to be informed – to hear it from you rather than someone else. You want them to be prepared.

We bought books and read them. We made sure the kids knew they could ask any question they wanted and we would do our best to answer. We answer the questions asked and don’t add to it a bunch of additional information they may not be ready to hear. That said, we sometimes sense there’s more anxiety about something and have to dig a little to get the 9 year old to talk. We have to respond carefully when the 5 year old says, ‘Mommy, you’re not going to die for a long, long time.’ We have to watch how much we talk about things around them. We don’t want to keep things secret, but when your daughter says she’s worried because she forgot where she put something she’d had in her hands moments before, you realize you’ve probably been talking a little too much about your memory issues. We don’t want to overprotect, but we don’t want to cause unnecessary anxiety either. So, we haven’t talked about death with them. We hope we won’t have to, we hope every day for legendary.

For me, I want to prepare my kids for the day I do go. I want to know that they can cook, do some laundry, do some cleaning. I want to know that they’ll be open about how they feel – even if it’s hard to share the hurt – with their Dad and friends. I want to know that they’ll look after each other and their Dad. I want to know that they’ll ask neighbors and friends for help if they need it. I want to know that they’ll be loved, cared for, and nurtured; allowed to experience life and make mistakes knowing someone will be there to catch them as they grow into the amazing adults I know they’ll be.

I know that’s not so different from what any other parent wants for their children. But I have to think about that future today. I have to balance the realism with the optimism to make sure we’re ready, just in case.

The New Kitchen

My old kitchen was fine. It worked. Mostly. At a very surface level, it looked pretty good. But if you took a closer look, you’d see that the cabinets were the originals – with a moderately fresh coat of paint – but they were starting to fall of the hinges, literally. Our appliances started failing and were being replaced one by one (making a home warranty worthwile for the first time EVER.) Then the counter top (black granite tile) started falling apart. We’d put it off as long as possible. Something had to be done.

We hired a designer. She helped us make a plan that used the space more efficiently; make it more modern; make it more ‘us’. She recommended contractors and cabinet makers to make sure we stayed within budget. We selected and purchased appliances and fixtures. We selected cabinet materials and design and paid a deposit. We hired a contractor. The ball was rolling and we were very excited to finally be going through this process.

Then I had a seizure and brain surgery. We found out that I’d have to do 6 weeks of chemo and radiation.

The question was do we continue with the project or do we postpone it? Everyone said we should postpone. It would be too much. It would be too noisy. There would be strangers in my house every day while I was feeling terrible. There were some very good reasons for not doing a kitchen remodel while I was going through intense chemo and radiation.

But, I argued that it would be a distraction. I argued that the appliances were about to arrive and fill up my garage. I argued that when I finished chemo-rad, I’d have a new kitchen. No one wanted to argue back, I guess.  So, we moved ahead.

Our designer had to do more than we had originally planned. She took over project management and some other activities. She was great and kept things on track whenever they started to veer off. She helped with the overwhelming tile, flooring, counter decisions.  She was patient, kind, and supportive. I couldn’t have asked for better. The contractors planned for 5 weeks – which is crazy fast – it took 6 because of an issue that was out of their control.

It was dirty. I had strangers in the house every day. It WAS loud. The noise was unbearable at times. It was hard to nap when I really needed to nap. I was asked to make decisions that seemed really overwhelming in my condition – ‘do you want this here or here?’

We set up a decent temporary kitchen in the living room – functional, but definitely temporary. We had to wash dishes in a teeny bathroom sink – and by ‘we’, I mean my mom and my husband. We had a toaster, a microwave, and a single butane burner. We used paper plates and bowls. Our friends and family had been bringing food when I was in the hospital and immediately after to help lighten the burden. They continued to bring meals 2-3x a week through the remodel. It was hugely helpful and my family ate well.

It would have been dreadful were it not for my designer (see above) and my mom – who packed up the old kitchen, helped set up the temp kitchen, cooked, washed dishes, and mediated some of the minor crises that cropped up. Never once did she complain and tell me I was nuts for allowing this chaos to happen while I was slightly incapacitated and hypersensitive to noise and overactivity.

I ended my treatment with a new kitchen. A beautiful, functional space with new appliances – all of them work. It felt like a new beginning.

Would I do it all over again? Probably. Would I recommend anyone else do it? Probably not.

The Days Between

When you have a GBM 4 – even if the doctors are confident it was likely all removed – you’re told it’s not a matter of IF it comes back, but when.  In order to survive, you have to be constantly vigilant. You must continue treatment, the standard of which means that you spend 5 days on chemo, 23 days off every month and get an MRI every 8 weeks (they get more or less frequent depending on your situation). If you’re in a clinical trial, you go for extra scans, blood tests, whatever it takes.  You must be willing to forge your way through the side effects each month.  You must push the anxiety leading up to an MRI aside, so that you get out of bed in the morning and appreciate the day.  You work very hard not to let cancer be all you are in the world.

Your future is uncertain, so you plan that future in 8 week increments and you live your life as best you can between brain scans.  You know you’ll feel like hell by day 4 of that 5 days of chemo and that hellish feeling continues into day 8, so you plan your projects, shopping, socializing, and activities for your kids between day 8 of one round and day 4 of the next.

THESE are the days between.  These are the days when those of us with brain cancer try to be wives, mothers, friends, humans and push the cancer off center stage. We try to live every day to its fullest, enjoying as much as we can, while we can.  And we also try to live the more mundane every day, keeping our kids’ lives as ‘normal’ as we can. Our mortality and the reality of our cancer is always looming over us – will I have 1 year? 2 years? 5? or will I be a legendary survivor?  We hope for legendary.

I have brain cancer and I will continue to fight like hell. Some days the cancer demands my attention, but in the days between, I can be a mom and a wife and a woman first.

All for Science…and Hope

After the 6 week “chemorad” adventure (chemo+radiation), the standard course of treatment is 5 days of chemo (at double the dose from the 6 weeks) every month. Giving me about 23 days or so between. I’ll get back to that later.

One of the things about cancer is that we haven’t quite figured it out, in case you hadn’t heard. We don’t really know what causes it – though there are some pretty good guesses in many cases. We know something about how to treat cancers – some more successful than others. We can’t cure it…yet.  And there are LOTS of ideas and theories about how to treat it and those ideas have changed dramatically over the years.

This one is interesting to me at the moment about preventing and treating cancer. I’ll talk more about why another time.

William Li – Anti-angiogenisis

One good thing about all of this focus on treating and hopefully curing cancer is that there are options. If one drug doesn’t work, there’s another.  Nutrition and diet are gaining attention not only in the treatment, but in the prevention of cancer. The mind-body connection – exercise, meditation, positive attitude – is recognized as a benefit in treatment success.  And then there are the clinical trials. I’m not a HUGE fan of putting drugs, let alone experimental drugs, in my body – but if there’s a chance it will help me survive, I’m game to try and willing to risk the side effects.

Turns out I have (or had…it’s ‘gone’, remember?) a protein in my tumor that was necessary to qualify for a Phase 3 trial of a vaccine that’s intended to teach my body to fight those darned brain cancer cells. OK, well maybe it’s more complicated than that, but it involves big words and things I don’t really understand. I am test subject xxxx in a double blind phase 3 trial of said vaccine. I may be getting the vaccine, I may not…but there’s a 50-50 chance I am AND I’m doing my part for science AND it bolsters my sense of hope that I’m going to beat this thing.

What the study entails (in addition to everything for the standard treatment) is another visit with the vampires, peeing in a cup, and getting four intradermal injections in my thigh each month. It’s not hard and doesn’t hurt…much. It takes up some time. But, honestly the worst part is the itching post injection – which lasts for about 3 days. They tell me that indicates an immune response (which is good), but imagine super hives, concentrated on a very small area of your leg. I’ve figured out that if I’m wearing jeans, I can fit one of my kids’ ‘owie’ ice pack in the front pocket and I have a hands-free form of temporary relief. I can’t take allergy medicine or use hydrocortisone creams, so ice packs are it. So far, I can handle that, but allergy season is kicking in, so we’ll see how this goes. As I’m sneezing uncontrollably, I’ll try to remember that I survived brain surgery and my 6 week very un-spa treatment. Homeopathic remedies anyone?

Assuming I have no new tumor growth – this chemo/vaccine routine will continue ad infinitum – i.e. for the rest of my life, however long that is. IF I do get tumor growth, we go with new treatment plans and potential new trials…but we hope it won’t come to that.

This Ain’t No Spa Treatment

The standard post-surgery treatment plan for a GBM 4 does NOT include a sugar scrub, a pedicure, OR a massage. Instead, it involves an intensive 6 weeks of chemotherapy and radiation. I think the only ‘benefit’ of brain cancer is that the tricky blood brain barrier means chemo is taken 7 days a week in pill form rather than intravenously – with a drug that doesn’t cause you to lose your hair, usually.  Radiation is 5 days a week and involves a mask and being attached to a table – and hair loss.  Damn.  There are weekly blood tests – what I call visits to the vampires.  Regular appointments with my Radiation Oncologist, my neuro-oncologist, my neurosurgeon…all attended by nurses, residents, and medical students. At these visits, I’m weighed, examined, questioned, and tested for memory and motor controls.

4 weeks post surgery, I went for a ‘planning’ appointment for this treatment. This involved vampires, a CAT scan, physicists (no kidding), and being fitted for a mask.  The mask is made out of this odd material that becomes pliable when warmed up, but hardens when it cools back down, so it can be used each day.  The material reminded me of those meshy, styrofoam ‘jackets’ they put on Asian pears.  I should mention here that I started this process with a slight case of claustrophobia.  Multiple MRI’s, being fitted for a mask and then being attached at the head to a radiation table 5 days a week for 6 weeks is an extreme form of immersion therapy, but it works.

I found out quickly that while my neurosurgeon had an excellent bedside manner – my radiation oncologist did not.  He is a lovely man and very good at his job, but either I’m not very funny or he lacks a certain sense of humor or an appreciation for bad Star Wars and Hobbit references.  Yes, an ability to laugh at my ridiculous jokes is required for passing my bedside manner test.

Aside from being a very tedious process, I tolerated it all pretty well.  I was tired, nauseous and gradually got more so.  The treatment accumulates – particularly the radiation – resulting in more side effects – fatigue, headaches, hair loss….

1. At the beginning, I napped most days, but usually not much more than a cat nap.  Toward the end, I was napping 3 times a day.  Walking up the stairs was exhausting.

2. The thought of food was gross, the smell of food was gross, seeing food was gross – but I had certain things that tasted good so I could still manage to eat.  Those things changed over the course of treatment.  For instance, I hated a specific kind of ‘cheese’ at the beginning, but craved it starting somewhere in the middle of treatment.  The funny thing about constant nausea is that I found myself thinking about food a lot.

3. The thirst was insane.  I was ALWAYS thirsty and water did nothing to quench it.  I started adding Vitamin Water Zero to my water bottle and it did the trick.  Who knew?  Every one is different, but this is one piece of advice I’d share with anyone going through radiation because unquenchable thirst is very frustrating and I would never have thought that just a little something slightly fruity would make such a big difference.

4. Radiation will likely cause hair loss.  I ended up with what I call a ‘reverse monk’ – imagine a friar with his ring of hair around his head at ear level – THAT is where I went bald.  Sometimes people don’t lose hair until after treatment is over.  I was a ‘3 weeker’.  When you know it’s coming, it’s easier, but it still freaked me out a bit and hats became a wardrobe staple.  There are stories about people not growing hair back or it coming back a different texture or color.  When you only lose PART of your hair, this possibility can create all kinds of anxiety.  Turns out it’s coming back the same color, same texture and I only have one spot where I’m still bald.

5. Radiation can cause swelling in your brain.  Which will give you headaches.  Which requires you go back on the steroids you took post surgery.  These steroids will make you irritable and ravenous.  I ate…a lot.  No seriously, a lot…and constantly.

6.  Chemo will mess with your blood levels – it’s inevitable.  The thing that they watch are your platelets. The platelets are essential for clotting.  The lower your platelets are, the greater the risk of bleeding to death from a paper cut.  OK, so that’s a bit of an exaggeration. I started out with a low(ish) platelet count, so I asked every nurse and doctor I met, ‘what can I do to raise my platelets?’, ‘I’m vegan, so is there something I can eat to reduce my risks?’  EVERY one of them said there was nothing I could do – ‘chemo will lower them, it happens.’ (More on this topic later) Some people live full and active lives with low platelet counts – but if mine went below 60, I was going to have to stop chemo.  That happened in my last week – so not REALLY a big deal in the overall plan, but I felt like I was missing out on the opportunity to hit the cancer full throttle.  What surprised me is how many people congratulated me when I mentioned that I had to stop chemo.  It made me angry that they didn’t ask what it meant, why I had to stop, how I felt about it – but just jumped to an assumption that….well, I’m not sure what the assumption was…but I didn’t like it.

It was an experience.  Not a day-at-the-spa kind of experience.  It could have been worse based on stories I’ve heard or read.  But radiation is something I’d rather not do again, if possible. Chemo, however, I’m stuck with.  But now it’s 5 days each month at double the dose I took daily for those 6 weeks.  Everyone asks, ‘how long will you have to do that?’  Each time, I answer ‘as long as it keeps working, for the rest of my life’ – however long that is.

Brain Surprise

On Oct. 7, 2012, I had a seizure – at a pumpkin patch – with my family and a friend and about 300 strangers. One minute I was watching our kids eat snow cones and the next minute I was waking up in an ambulance, confused. I was taken to the emergency room, where they stuck me with needles and ran tests – including a CT scan. I was told I had a tumor in my brain and was being transferred to Stanford Hospital immediately. More tests and scans and visits from various specialists and residents and medical students and nurses. Surgery was scheduled for October 10. It was all a blur – my husband tells me that we watched movies while we were waiting for Wednesday to come around.  I don’t remember. Memories are hard to make after a seizure and with a big mass in your brain. Surgery went remarkably well – I was lucky enough to have a brilliant surgeon with a startlingly good bedside manner. He believed he got 99.9% of the tumor, but couldn’t say 100% because it wasn’t encapsulated. We knew at that point it was cancer, we just didn’t know how bad. I had more tests, more scans, more below average hospital food – and went home on October 12. I was tired and my memory was sketchy, but I was feeling pretty good under the circumstances.

We went back for a follow-up and the first shoe was dropped. Lab tests had come back, confirming that 3+ cm mass in my brain was cancer: aGBM 4. The worst kind of brain tumor.  Aggressive and persistent – meaning it’s not a question of IF it will come back, it’s WHEN. The words I’ll never forget were spoken: We now know how you’re going to die, we just don’t know when. To all of my doctors’ credit, no one shared the grim statistics for people with a GBM 4. They told me that my age, the fact that I was symptom free (in retrospect, there may have been SOME symptoms, but it’s funny what you find when you start looking), the near 100% resection of the tumor, the Giant Cell variety, my overall health…essentially, I had a lot going for me. BUT, it was still time to put my affairs in order, spend time with my family, take that trip, etc.

In June of 2012, after 14 years, I started a year-long leave of absence from work to spend time with my kids (5 and 9), nurture my relationships and my soul (cook, knit, sew, garden), and recharge before I went back to the grindstone. I spent the summer doing just that and it was awesome.  The kids started school and I signed up to be room mom for my son’s kindergarten class. I had 4 months of stay-at-home-mom bliss before my brain surprise.

I have brain cancer. I’m a realist. I’m a planner. I’m a worrier (a what-if thinker, if you will). So…I’ve cried. I’ve panicked. I’ve spent some days not wanting to get out of bed. I’ve bought journals for my children so I can tell them things I might not be around to tell them later. I’ve appreciated my husband even more than I did before – for his ability to be my advocate, ask the questions I was too dazed to ask, to hold my hand, to keep visitors at bay when I couldn’t face anyone, for being my strength all while he was just as terrified as me. I’ve started to put my affairs in order – lawyers and all.

Since I have young children, I’ve also tried to maintain some semblance of normal. “I’m still mom” kind of stuff. The kids still have chores, they still have to follow the family rules, they still have lessons and practice. They still have play dates and birthday parties. They still get to be kids even if their mom has cancer. My mom and dad, my friends, their teachers, their friends have helped to make that happen. Especially during the six weeks of intense treatment and kitchen remodel – but that’s another story.

I am also an optimist – I know it’s a contradiction, but I’m complicated. Many people who have 3+cm GBM 4 tumors discovered in their brains are FAR worse off than me – they don’t live next to a world-class medical center with brilliant neurosurgeons (with excellent bedside manners) and top-notch neurooncologists; they have to FIGHT to get to one and then TRAVEL FAR for treatments; they don’t have family and friends who can and will drop everything to help; they have inoperable tumors, major side effects pre or post surgery; they don’t tolerate treatment or worse, the treatments create new health issues; their doctors tell them from the start what the grim statistics are – taking away whatever hope they would have been able to muster.

So here’s my optimism coming out: When I had my seizure, there was a nurse close by who knew what to do. My friend was there to take my kids and keep them calm and safe and allow my husband to be by my side. The emergency room doctor at the local hospital didn’t give me any medication that would have made my situation worse (it’s happened) AND she didn’t just send me home – she managed to get me transferred to Stanford and placed under the care of a brilliant neurosurgeon (did I mention his bedside manner?). I didn’t have to fight for or think about what treatment course to take for the mass in my brain – it was decided and done before I had time to think about it. I handled the surgery well and went home 2 days later. I recovered well and had minimal side effects from the surgery. I was already on leave from work, so I didn’t have to deal with taking a leave or worry about who would manage my job.  My family and friends are awesome. Of all the myriad of things that could have gone wrong – think: driving when I seized, further injury when I fell, inoperable tumor, unsuccessful surgery or side effects (they told me I’d swell and bruise severely – I didn’t), and so on….none of it happened.

I have brain cancer, and yet I feel very lucky. I am balancing that fine line between my realism and my optimism. Failure is not an option, but let’s prepare for the worst, just in case. I try to live without worrying about when the other shoe will drop, but it’s always there…looming.

This blog is about how I struggle to find that balance while I continue treatment to fight the beast in my brain and live my life as a mother, wife, friend and citizen of the world. It’s about how I spend every day left in my life – however long that is.