Suddenly, Everything Can Change

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

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

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

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

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

Remember that suddenly, everything can change.

Stuff To Do When You Feel Blue

I know what you’re thinking. ‘Oh no, not another list!’ But here it is anyway.

I’ve heard so many people talking about feeling blue this week, and the same trend has happened over the last few months. It seems that we may have a collective blueness cycle. I thought I’d share some ‘super helpful’ tips on ways to feel just a little better. These are things that work for me (sometimes), maybe they’ll work for you when you’re feeling a little blue. Please note that this list may be more relevant for the introverts – extroverts may want to call a friend, go out dancing, or something else that sounds awesome to an extrovert.

1. Watch Peep And The Big Wide World. Yes, it’s meant for the preschool crowd, but this show will make you giggle. I swear.

2. Run, walk, bike, swim, dance, do yoga, kickboxing…whatever exercise you chose, just get your body moving.

3. Buy/borrow your favorite book – as an audiobook. There’s something very comforting about listening to someone tell you your favorite story.

4. Find a movie that will make you cry your eyes out – like full-box-of-tissue cry your eyes out – and watch it the whole way through. I personally recommend Marley & Me, The Notebook, Up…but everyone has something that turns on their waterworks. Whatever it is, sometimes a good hard cry does wonders.

5. Make a list of things to do – chores and errands, even if you write down ‘shower’, ‘get dressed’, ‘eat breakfast’ – then cross them off. It may help you feel like you accomplished something. Some days, it’s ok if all you can manage is to get out of bed and eat a bowl of cereal.

6. Do something nice for someone else. Send a card to a good friend, just because.

7. Go somewhere really dark – outside – and see if you can find a satellite floating through the sky. It will remind you how big the universe is. Then remind yourself that you’re an important part of that universe – especially to those who love you.

8. Write it down. Journal your feelings, fears, angers. You don’t need to make it public, but sometimes you just need to get it all out of your head.

9. Go get a massage or a mani/pedi – let someone else take care of you for an hour or so. Do NOT go get a haircut – rash choices are typically made when blueness and hair are combined. You may regret it later.

10. Think about your diet – what have you eaten in the last few days? Food is fuel – are you fueling yourself with goodness or junk? (I will always feel like crap after I eat too much sugar or skip a meal or realize I’ve forgotten to eat fresh fruits/vegetables.)

If none of this works, maybe you have other ideas. Otherwise, it’s maybe time to talk to someone – a good friend, a therapist, your doctor. There’s no reason to feel miserable and if you feel like there’s nothing you can do to climb out of the blueness, it’s time for some help. Ask for it and feel better.

(A note for all of my parents and parents by marriage – I’m not feeling blue just now. It’s ok, relax.)

You Are What You Eat

<Soapbox Alert>

I eat. Every day. Sometimes I eat more, sometimes I eat less. Sometimes I eat only because I know I have to. I usually enjoy eating. I usually enjoy cooking. I’m a pretty good cook, in fact – or so I’m told.

I’m vegan. That means I don’t eat anything that comes from an animal. I’ve been vegan for a long time – since I was 22. My family is vegan – my husband and my children. My mom is an occasional vegan. My brother-in-law is vegan. I have many vegan and vegetarian friends. The truth is that sometimes there’s some animal product in our food (which sounds really gross when I put it that way.) Occasionally, we get some egg in a baked good. Caseine can be tricky to avoid. They hide ingredients derived from animals by calling them something unrecognizable. We eat honey – we don’t believe in bee oppression. But we only eat one kind of honey unless we can’t avoid it. Heitkam’s Honey makes all other honey seem like high fructose corn syrup. Craig didn’t pay me to say that, it’s just the truth. You can find Craig and his honey at the San Jose Flea Market every weekend.

Cancer can be a very effective diet (as in weight loss) plan. I don’t have the kind of cancer that eats away at my body. I didn’t spend my 6 week non-spa treatment vomiting. I did start eating way less (except when I was on steroids). I stopped drinking alcohol (except for an occasional glass of wine). I have small snacks between my small meals. I do a better job of drinking water throughout the day. I read labels and I eat lots of fresh fruits and veggies. I’ve lost weight – enough to need new clothes. While I wasn’t overweight, it was weight I probably needed to lose, so now I’m where I really should have been before. I’m trying hard not to lose more. Even so, I would not recommend cancer as a way to lose weight. Ever. It’s extreme and unnecessary.

While I’d highly recommend the vegan diet, it takes work and practice and diligence. It’s the one my doctors were happy to hear I already practiced. It’s the one my kids’ pediatrician puts her overweight patients on to get them back on a healthy track. You can read story after story about people who have lost a lot of weight when they went vegan. But it’s not really about the meat or the cheese or the eggs. It’s about eating healthier. It’s about moderation. It’s about being informed. It’s about knowing about the food you put in your body and your family’s bodies each day. There is proof of a link between diet and health – if not cancer. It doesn’t seem like rocket science when you really think about it. What you eat determines whether you have the nutrients your body needs to grow and thrive and function as intended.

There seems to be cancer everywhere around me. Maybe it’s like when you learn about a new car and then all of a sudden you see that car EVERYWHERE…you probably saw it before, you’re just looking for them now. BUT, ask yourself – what effect does genetically modified produce, factory farmed meat (full of hormones and antibiotics), produce full of pesticides or highly processed ‘food’ have on your body.

My diet couldn’t have prevented my kind of cancer, but it could prevent other kinds. So, climbing on to my soapbox, I’d suggest:  Eat more whole foods, less processed. Eat more green, less beige. Eat more fruit, less sugar. Cut out the soda, buy a re-usable water bottle and keep it filled and at your side. Don’t feel like you have to clean your plates when you eat out – some American portions could feed an entire family. Learn about where your food comes from. Understand what Organic and GMO really mean. Learn about food additives like artificial food coloring. Read labels and ask yourself if you want to eat that thing you can’t pronounce. Ask yourself why some chemicals, additives, and GMO are banned in other countries and not in the US.

I’m not saying you should be vegan, it’s not for everyone. But maybe read, learn, and make even small changes. I know it’s not easy to change the way you eat, but it can be done and it just may save your life or the life of someone you love.

Some resources I’d recommend:

100 Days of Real Food

Food, Inc.

The Non-GMO Project

The Vegetarian Resource Group

Dr. Weil

Dr. Sears

(Climbing down off of my soapbox. Happy eating!)

Silence, I Command Thee!

Another post surgery / treatment side effect:

It started post surgery, so I’m assuming it was the cause, and it continued throughout the 6 week treatment phase. This one effected everyone around me, so I’m sorry friends and family.

I became ridiculously hypersensitive to sound and activity. This in my house full of musicians and music lovers – including a child who sings constantly.  No seriously, he rarely stops. We played no music from October 12 to late January. No radio, no CDs, no iPods and worst of all, no instruments. In my house are drums, cajons, didgeridoos, bongos, a cuica, tambourines, flutes, electric and acoustic guitars, a piano, a keyboard and an accordion. You might ask, ‘How can you stand it when you’re NOT hypersensitive?!’ Good question. I think they found any reason for me to leave the house just to be able to play something…anything for even a few minutes.

In the car, the sound of the turn signals was excruciating. The little repetitive noises that my children make were excruciating. The television, at what any other human with normal hearing would call quiet, was loud. The gym where the kids take classes – that was the worst. Multiple sources of noise at once sent me into a desperate attempt to escape.

Aside from the moratorium on music, the hardest part of this new super hearing was living in a house with 2 young kids – who, being young kids, naturally make noise.  They play, they argue, they get mad, they make noise. My husband and my mom (who basically lived with us for a few months) spent a lot of time reminding them to be quiet, asking them to lower their voices.  Essentially, asking them to be less childlike.

Earplugs became my constant companion. I used them inside the house, when I went out, when I went into stores/restaurants, when I saw a movie, pretty much any situation where I couldn’t ask someone to turn the sound off.

Next time you walk into a restaurant – put yourself in the shoes of someone who is sensitive to noise, someone who falls into the autism spectrum for instance. I walked into a ‘restaurant’ with my husband for a quick lunch one day and within seconds, I wanted to leave. I couldn’t hear the questions my burrito builder was asking. The volume of the music was bad techno club level. I couldn’t believe I hadn’t noticed the volume in these ‘restaurants’ before then.

I was worried, of all the things I had to worry about, that this would be my new normal.  My neurosurgeon hadn’t heard of anyone developing this new hypersensitivity before. My neuro-oncologist hadn’t either. I like nothing more than throwing curveballs at my medical professionals.

Eventually it got better. If I’m tired, I still can’t handle multiple sources of noise at once. Music is now being played in the house – live AND recorded.  Which is good for my family’s happiness and harmony.

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.