Battle Wounds

There are doctor visits where I come away with wounds. Slightly less dramatic than an arterial line bruise that lasts weeks or a craniotomy scar, but that experience was a while ago. Wounds these days usually occur when my veins don’t cooperate. They might also include some emotional wounds, but those aren’t visible to the naked eye.

So, as I mentioned in my last post, I was going in for an MRI last Friday. I’ve gotten to the point where I can fill out the necessary pre-MRI form without reading the long list of questions about potential ailments and metal implants. I should have a stamp made for my drug allergies. When they ask if I’ve had previous scans, I say ‘too many to count’. When they ask the date of my last scan, I say ‘8 weeks ago’ and ‘8 weeks before that’. I’ve stopped trying to remember dates. Clearly I’m not a fan of having to fill out this form repeatedly. And I get to do it again in a month! Yippee!

My MRIs require contrast, so each one requires an IV. Sometimes the nurse gets lucky, sometimes not. This last one fell into the ‘sometimes not’ category. Two nurses, two failed attempts and one success sticking my tiny, scarred veins with a tube to insert some strange chemical into my veins while they’re scanning my brain. MRI rooms are ALWAYS freezing cold, warm blankets are a must – never turn the offer down. They also help keep you warm if you’re prone to napping during the scan. I am. I ask them to refrain from talking to me as each section of the scan experience is about to begin so that I can have a little snooze.

They tell me my results will be available in one to two business days. I say, ‘I’ll see them at 11:00 today. Thank you, have a great day. See you in a month.’ This isn’t my first time to the rodeo.

First bruise begins.

The waiting begins to see my neuro-oncologist. He’s usually over scheduled, rooms are overbooked, and he actually spends time with his patients if they need his time or he’s got news for them – usually bad news. I typically don’t mind waiting since I’ve been hearing nothing but good news for so long, but this time I was anxious. There have been signs of inflammation OR a tumor making its comeback. My MRIs are more frequent. We’ve discussed our approach of ‘waiting/monitoring’ since whatever it is has been growing slowly (GBMs are reported to double in size every two weeks) bringing the tumor regrowth theory into question. We’ve discussed our options in a distant, ‘don’t need to do anything now’ manner. But when something other than an empty spot and scarring shows up, the anxiety level raises slightly. This MRI showed that  questionable area growing…maybe. We don’t know what it is, BUT all of a sudden our discussions about potential next steps became more serious. More like we needed to consider which of those options we would like to pursue and what it would mean to my participation in the vaccine trial.

The invisible mental wound begins.

I went across the street for my vaccine shots. I have my vitals taken for the second time in the period of an hour. My temperature was the same, in case you were wondering. In these visits they have to draw blood for the study’s purposes. I don’t know, honestly, which test they’re running since I don’t get the results. When I get a nurse who knows my veins and their temperamental ways, it usually only takes one attempt. One and done. But this time, despite the success, my vein showed its displeasure.

Second bruise begins.

My vaccine shots involve a rotation between my right and left legs. This was my right leg’s turn. A circle is drawn with a Sharpie. No bunny ears or flower additions this time. My regular team of nurses and coordinators had the day off. Then four intradermal shots are injected around that boring, unadorned circle. They swell, turn pink and become itchy almost immediately. That lasts for a few days.

The vaccine ‘wound’ begins.

This has become such a regular MRI/vaccine day for me, that I’m largely unfazed by it all. This was slightly different given the wounds of the day. I’m hoping I can go back to unfazed on May 1st. But, I understand that given my survival thus far, I may be on borrowed time. Until I survive through the next steps, whatever they may be. Then I’ll go back to being unfazed.

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What If?

It was MRI day for me today. The typical anxiety and ‘what ifs’ set in this week.

What if it’s back. What if we have to explain the possibility of more surgery and associated risks to our kids. What if we have to explain that I may die. What if I do die.

Every mother out there is familiar with the ‘what ifs’. Once you have children, a whole new set of fears enter your brain. You know what they are. This is really no different, except that to address these ‘what ifs’ I can’t double check the window locks. I can’t tighten the straps of a helmet. I can’t teach them about stranger danger. I can’t teach them how to defend themselves against the bad guys.

I’m fighting as hard as I can against the bad guy lurking in my brain and so far, I’m winning. The ‘what ifs’ have lost.

MRI was clear. 17 months clear.

The Days I Forget

As I was thinking about those long periods of between days I mentioned in my last post. The days between appointments (only 1x month for me at the moment.) It occurred to me that there are days where I forget. Not forget the day – though some moments leave my brain fairly soon after they occur – but forget that I’ve got brain cancer. I’m in this fortunate period of time, where I don’t have an active tumor, have few major symptoms, and have been seizure free for over 3 months. I don’t spend as much time writing about my life and experiences or visit Twitter as much – maybe because I’m unsure where I stand. Am I in remission? Is this just a slight break in the battle? Do I have the right to say I’ve got brain cancer? There are days when I forget about the fact that I AM in a constant fight against the beast. It doesn’t mean I’ve forgotten about the others fighting the beast as well.

When I remember, I have some feelings of guilt. Like I’m being selfish for focusing more on my family (which I know is ridiculous to feel guilty about.) But I do feel like I’ve neglected those others, I’ve neglected our connection, I’ve neglected any support I can offer and the support I receive. Through those connections I’ve gained strength in knowing I’m not alone, but I see so many stories of people who’ve lost the battle and those they’ve left behind. I try to avoid those stories because I’m afraid it will hinder my optimism and take away some of my hope that I’ll be around for my family for many years to come. I’m not under any disillusion about my condition, but my support system has gotten me this far by truly believing I will be legendary. I want to be a success story that will inspire others to fight and have hope. I want to survive. I WILL survive (sorry about the ear worm.)

So, there are days I forget. I feel healthy. I listen to the bickering of my children and worry that they’ll do it forever. I laugh at the thoughts and observations that come out of my son’s mouth – making me wonder what the wheels in his brain are doing. I find joy in seeing my daughter get excited about dancing or designing the latest fashions. I relish the moments when I can have conversations with my husband over the nuances of the latest movie we’ve seen. I walk the dog and marvel at his ability to jump 3 feet up a tree in an effort to catch a squirrel – he never catches one, but he never gives up trying.

But the next MRI will come along. I’ll get anxious, as we all do before an MRI. I’ll hope that it will be clear. I’ll think positively. All while I wait nervously for the other shoe to drop, but at the same time trying to convince myself that it won’t.

I’ll come back to Twitter and the connections I’ve made. I’ll never forget that you’re out there fighting too. But sometimes I just need to take a break from the fear and burden of having brain cancer. I’ll manage the conflict of feelings I have as I retreat from the community for just a little while, but I’ll be back. I’ll never forget that this is a group effort.

Childhood Anxiety

My son’s reading light has developed a ‘twitch’. It behaves like a strobe light when you first turn it on. Eventually, after some effort, it behaves like a reading light should. While in strobe light mode, I cover it up with my hand – sensitivity to the flickering on my part. Last night, he asked me to not cover it up because he liked it when it flickered (this is the kid who wanted to put the Instant Party Machine on his Christmas list when we got yet another catalog in the mail.) I explained that the light hurt my eyes when it flickered and I wouldn’t remove my hand. He asked why so I explained that for some people, that strobe light activity is hard on their brains and can sometimes trigger a seizure and I wasn’t taking any chances. Keep in mind, my kids have seen 2 of my seizures and have to walk home from school because of them. After we finished our book and were snuggling before he fell asleep, he asked if he was going to have a seizure. I explained that he wouldn’t likely have seizures in his lifetime. I went into a little more detail about why I do and what we’re doing to avoid another. He was confused why I had a seizure BEFORE I had brain surgery – but finally understood after I explained a little more detail. He had an ‘OH, now I understand’ moment and went to sleep peacefully.

As an aside – my desire to put the 7 person tricycle from that same catalog on MY Christmas list was nixed. I thought this was unfair and tried to make the argument that surely we could find 7 people to ride it with us. No luck. Clearly it was a matter of where to store it rather than the $20,000 price tag.

Back to the anxiety… This morning, I woke up and had no voice (thank you lingering cold.) I woke my children up with whispers. My daughter was unfazed. My son, remembering the expressive aphasia preceding the grand mal phase of my seizures, was not quite as unfazed.  He asked if I was ok at least 4 times. I explained in a whisper that I was fine and had just lost my voice, but it would likely come back later in the day. Unconvinced, he kept a close eye on me while we went through our morning routine. Once he saw that the routine hadn’t changed and I still had enough awareness of the time – 5 minutes to get glasses and shoes on, so move it! – he finally relaxed.

While most of the time, our kids handle the new me and all that comes with it calmly and bravely, every once in a while the anxiety comes through. It’s a reminder to us that we need to check in from time to time and remind them that all is ok and they can always ask questions if they’re worried about something…anything. I don’t think this is necessarily unique to our family, so remember to tell your children you love them and look for the signs that maybe, just maybe they need to talk about their worries.

Happy MRI Day!

It was MRI day today.

A bright and early, first of the day MRI.

So early that my coffee hadn’t kicked in to give me time to really panic or get overly anxious.

While there’s always some anxiety before you get an MRI when you have a brain tumor, especially a GBM, for some reason I wasn’t particularly anxious before this one. I may have been too busy to worry. I may have felt too healthy to worry. I may have had fewer made-up symptoms to make me worry. Last night, as I was putting a load of laundry in, I thought I saw a spider out of the corner of my eye. I looked at the spot where I thought I saw it and there was nothing there. I had a moment of panic – one of the vague things I remember pre-discovery was ‘seeing’ things that weren’t there – mere glimpses out of the corner of my eye. Turns out this particular spider existed…well he did exist, until I squished him (while others in the family are believers in ‘catch & release’ method, I believe in squishing when it comes to spiders.) I sighed in relief, which may be the one and only time I was relieved to see a spider. This spider being real and not just a figment of my imagination provided me with indisputable proof that the tumor had not returned.

So I was not surprised that my MRI showed no changes this morning. The tumor has, in fact, not returned. I passed all of my neurological tests…again. I have at least 3 ideas on how to mess with them the next time I do these tests. Doctors and nurses LOVE it when patients mess with them while testing for signs of trouble in their neurological functions.

Timing of my appointments for the day allowed me to have a free chair massage, eat lunch, and shut my eyes while we waited. A good wireless connection allowed my husband to work with minor interruptions.

There’s nothing I like more than good news.

Your challenge of the day: Why did Peyton Manning get suggested as a Tag on this post?

Mission: Almost Normal Childhood

Having young children, we’re always very conscious of what we say around them. We offer opportunities for them to talk and they have total freedom to ask any questions they want. We try to keep their day-to-day lives as normal as possible – homework, chores, lessons, etc. We don’t want them to worry or spend their days being anxious, we want them to live life and experience their childhood without fear of what might happen, what if… WE don’t even know, so how would you explain that uncertainty to a child?

They are pretty typical kids and siblings. They resist doing homework. They have messy rooms and leave their stuff all over the house.  They pester us to watch TV. They use their imaginations and create music, art, and cool dance moves. They fight and bicker about pretty much anything. They look out for each other and sneak in acts of love and kindness. They get silly and loud. They like to cuddle and read together. They throw fits when they can’t find the ‘right’ pants to wear on a cold morning. Pretty normal kid stuff.

But they’ve still seen their mom have seizures and be taken away in an ambulance. They’ve still seen their mom in the hospital with ~35 stitches in her scalp. They’ve seen their mom suffer through chemo and radiation, unable (or unwilling) to get out of bed some days. They know I have brain cancer and that it’s serious, though we’ve avoided discussing the ultimate risk of death. They’ve seen me going to Stanford for frequent appointments and taking a handful of medicine twice each day. They have gotten a little too comfortable with my memory loss and have learned to play it in their favor – well, at least the tween has tried.

While they lead pretty ‘normal’ lives, we can see the trauma and anxiety come through from time to time. If I pause in the middle of a sentence, I get a rapid, ‘Mom, are you ok?’ If I cough while I’m reading a story, I get a ‘Mom, are you ok?’ If I get lost in a thought, I get a close look-over and a ‘Mom, are you ok?’ My daughter often double checks that I’ve taken my medicine (after 2 alarms and text reminder have already occurred.) Occasionally, my son will tell me ‘that I’m going to live a very long time’ in our bedtime cuddling. I catch the hidden glances in my direction any time they sense something is out of the ordinary.

Unfortunately, a few people have made comments like ‘everyone with cancer dies’, which WE know is not true. Those who make these comments don’t think of the impact those four words can have since I’m not THEIR mom and they’ve not experienced what our kids have lived through in the last year. But to our 6 and 10-year-old it’s a scary thing to hear. It makes the fearful ‘what if’ come to their minds and we have to spend a few days talking them down from the fear and anxiety – to get them back to spending more of their time just being kids.

The brain cancer is perhaps a little harder for them to grasp, because it’s less visible. But the seizures are VERY real and VERY visible and VERY scary. Being able to talk about it helps, but sometimes it’s easier if you can write it down. This blog has been great therapy for me, and since my daughter also loves to write, I asked her if she’d like to write something about what it’s like to have a mom with brain cancer. She immediately said ‘yes.’ This is what she wrote:

It is sort of scary to have a mom who can have a seizure, but knowing what to do and that we have neighbors that will help makes it a lot less scary. It is annoying that we have to walk a lot of places, like soccer practice and home from school. I am still a little scared when I hear a siren. Now she has a special medicine or as I like to call it ‘miracle medicine’.

That ‘miracle medicine’ is Ativan. I got a prescription after my last seizure, which was a status epilepticus. I’m supposed to take it if I seize in an attempt to avoid another life threatening episode. We can only hope that the secondary seizure medicine I now take will work, and that potential emergency doesn’t happen.

A fire truck and ambulance came into the neighborhood last night after bed time. She called out for me and I had to reassure her that I was fine and they weren’t coming for me.

I feel like we’re doing a pretty good job of keeping our kids’ lives on track and ‘normal.’ We don’t coddle them or excuse any bad behavior, but it’s important to remember that they feel anxious and have experienced trauma too. Sometimes a little more patience and an extra hug are needed. Then they need to go finish their homework and clean their rooms, just like any other kid.

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.)

Waiting For My Toxins

Assuming my platelets are cooperating, I’ll start my next round of chemo tomorrow.

I, being forgetful (or a master procrastinator), waited until the last minute to order my refills. My particular brand of toxins have to come from a specialty pharmacy, they deliver them right to my door. They scheduled delivery for this morning. That’s how specific they get with the delivery window – ‘Tuesday morning.’  Of course, receiving my toxins requires an adult signature. So, I quickly ran my kids to camp and left a note on the door saying I’d be right back. An hour and a half later, they’re still not here. Did I miss them? They don’t leave a note like UPS. What’s their definition of morning? Will they be here before I have to go pick up my child who doesn’t want to ride the bus 45 minutes away to sit on the side of the pool in the wind and rain? What if I get in the shower and THEN they come? What if I’ve missed them? When will they come back? What if they have to come back tomorrow morning? I’ll be at Stanford visiting the vampires, peeing in a cup, and chatting with my Neuro-oncologist about my platelets and his cruise to Alaska. What will I do if I don’t get my toxins in time?!  (Run around the room in a panic waving my arms in the air)

I understand I’ve brought this on myself because I didn’t order them sooner. I don’t like generic delivery windows. I’m impatient, I don’t like waiting around…even if I was going to be home anyway.

I guess I’ll just go ahead and do some laundry.

Planning Ahead

I’ve mentioned that pre-scan anxiety, the blend of hope and fear. There’s also, I’ve discovered, a post-scan funk. I’ve been trying to figure out how to describe it and how to allow myself to work through it without guilt. Maybe writing about it will help…

Having a clear scan is great – it’s like being given permission to live your life fully for another 8-12 weeks. Everyone is relieved and congratulates us on the good news. We all breathe again. We celebrate with champagne. It IS good news, after all.

But somehow, I find myself wanting to remind people that it’s good news FOR NOW. That it can all change in a heartbeat. That I’m still fighting Stage 4 cancer. That I had the most aggressive brain tumor known and while there’s no sign of it now, it could reappear at any point – jumping through that damn door yelling ‘Surprise! I’m back!’ Those words my neurosurgeon said, ‘Now we know HOW you’re going to die, we just don’t know WHEN’ stream through my thoughts daily. The chances of this tumor coming back are high and while we’re fighting it with a full arsenal, that reality is always there.

I know I should relish the good news and live life fully in those 12 week intervals. I know I should think positively and assume I’m ‘cured’ until I hear otherwise, but it’s hard. Maybe it’s because I’m a planner and I’m struggling with the varying degrees of uncertainty in our lives. Maybe 12 weeks isn’t enough time for me to fully enjoy the planning. Maybe it’s because I’ve left my career behind and am still trying to adjust to the idea of being a stay-at-home mom (even though I’ve been doing it for a year). I need to contribute and feel productive, but I just don’t know how yet. I still want to do it all, even though I understand that I can’t. It’s sometimes easy to forget my new limitations until they present themselves with a slap in the face. I know I’ll figure it out, but not having the answer now adds to the funk.

My treatment schedule makes it hard to plan anything too far ahead – I can’t get beyond 2 weeks, let alone 12. I’ve got vaccine appointments, visits to the vampires, appointments with my neuro-oncologist, rounds of chemo, recovery from rounds of chemo… Finding time to plan a family trip for more than a couple of days is tricky when we don’t know how my platelets will respond to and recover from the chemo – which would throw the whole schedule off yet again. So maybe the reality is that 12 weeks to fully live my life doesn’t really exist.

The worrying me, the ‘what-if’ me, the compulsive planning me comes out after a scan. Even a good scan. I’ve given myself a week to wallow in it and to work through it – I’ll keep working out the guilt free piece. It’s now time to carry on living, even if it’s only 2 weeks, or even one day, at a time.

 

“Make every day count… Even when you think it’s the worst day of your life; for you never know when it’ll be your last.”  – Solange Nicole

“Every instant of our lives is essentially irreplaceable: you must know this in order to concentrate on life.”  – André Glide