Burying the lede

I know updates to EveryDayLeft are less than frequent and even less scheduled. This is my fault (husband reporter), and chiefly for two reasons:

1. Life — it won’t stop happening for even a minute; and

2. I really don’t want to speak for Karyn any more than necessary. She has always had a direct relationship with you wonderful folks and I don’t want to get in between you. What can I say? I’m just not the jealous type. Therefore, I’ve always felt a need to write as little as possible.

Still, when we hear from multiple people asking how Karyn is doing, and outright telling me it’s about damn time to write, I listen.

The latest for Karyn is that it’s been rough, to be honest. Headaches are have mercifully been less frequent (great news), but they do cluster around Avastin infusions. That’s ironic, considering Avastin is supposed to help with headaches that might be caused by intracranial pressure. A big issue of late is that energy has been low. Whereas a nasty headache would keep Karyn inside for much of the day, fatigue is now doing that. We walked around the block last weekend, and that was great, but it was the first long walk she’d taken in quite a while.

Dealing with background noise and visual stimuli has become more difficult, to the point where concentration on a conversation or task is easily broken by nearly anything in the environment: music; talking in another room; someone walking by; the dog scratching his ear; etc. It means trying to keep things quiet and still whenever possible. As you can imagine, the natural kinetic energy of two kids, a Jack Russell terrier and me (officially part of the problem) make “whenever possible” largely impossible.

On top of that, Karyn’s ability to communicate has been diminishing. For someone so articulate, witty and with such impressive writing skills, this is heartbreaking. She starts to say something, and the words get caught on their way out. In trying to push them out, the whole thought evaporates. Trying to write it down is no better. It’s like there’s massive construction on the communication pathways, and very few words can get passed the flagman before the sign gets turned to “Stop.”

This was the state of affairs leading into last week’s MRI, and that had us dreading the results. So — and this is me burying the lede — you can imagine our happy surprise when the doctor said the scan looked “really good.” He said it hadn’t changed much since the one in February, which means radiation did what we hoped it would: Tumor growth has, at least for now, stalled. Totes amazeballs, right?

It really is great news, but it left us without an explanation for the increase in symptoms. If the difficulties are caused by her radiation treatments (radiation is, after all, the gift that keeps on giving), they may be here for a while as Karyn’s brain heals. Her steroid dose also increased, and that slightly improved her language for a couple days, but it hasn’t lasted. “Frustrated” only begins to capture the feeling. Other “f” words also come to mind.

We’re staying in touch with her amazing team of doctors and wizards to discuss other options. Ritalin might be something that helps with fatigue and thus language. It’s always harder to communicate when exhausted. We are hopeful this is just another bump in a road that has already been pretty bumpy. Good thing Karyn is equipped with those heavy-duty badassery shocks.

Open Ended Death Sentence

A few people have asked me about my reaction to Brittany Maynard’s death. How do you feel about it? Does it upset you? Do you think it was ‘right’? Would you do the same thing? Do you think she gave up and should have gone through surgery and treatment? And so on. Brittany isn’t the first one to die of this disease, there are many others who fight the battle and lose. We lose people to GBMs every day. We also see survivors who inspire hope and promise.

Very few of us know what was really happening with Brittany. We can all make assumptions and quickly move into criticism, judgement or support for her choice to die with dignity. Some will quickly call her decision, her ‘suicide’, immoral and she shall be damned for eternity. Maybe some people don’t believe Brittany should have ended her life, some say she should have fought harder, and others called her brave for making that hard decision and bringing the ‘die with dignity’ discussion to the forefront.

No one but Brittany, her family and her doctors know her circumstances, the details behind her tumor, and her final decision. She was diagnosed in January and ultimately chose not to seek aggressive treatment. She chose to die her way. She chose to use her situation to bring attention to ‘Die with Dignity’ laws in the country.

The one thing that I AM bothered by is the fact that her story brought a lot of attention to the ‘Right to Die’ laws, but very little discussion about brain cancer. It was a lost opportunity to open a dialogue about the need for awareness and funding to find treatments and even a cure, making sure that no one suffers through this disease of has to choose how they die. But I’m stating that disappointment from the perspective of someone fighting the same deadly tumor, which gives me a little bit of a bias.

NBC was one of the only news outlets that seemed to focus on the issue of brain cancer.  The article is here.

In contrast, Lauren Hill – another terminal brain cancer patient – has chosen to spend her final days raising funds and awareness for Diffuse Intrinsic Pontine Glioma (DIPG). This pediatric brain cancer is as deadly as Glioblastoma Multiforme. Her community has rallied around her with support and love.

Both Brittany and Lauren had/have terminal illnesses. They both chose how to raise awareness for what was most important to them. Neither decision was right or wrong, it was their decision and we should respect that even if it’s not what we would choose to do ourselves.

Living with a terminal illness with an open-ended completion date can be a little stressful at times. Ok, very stressful. Knowing you’re going to die from a terminal illness, just not when, can lead you to become paralyzed with fear OR it can lead you to enjoy the beauty that each day offers. More realistically, however, it’s a combination of both – sometimes in the same day. It will cause you to plan for the inevitable, privately or publicly.

Many of us might not make the same decisions as Brittany OR Lauren. Does that make one of us ‘stronger’, ‘braver’ or ‘weaker’ than the other? No. It just means that we’re all individuals fighting a disease that we know will eventually take our lives…sooner or later…and how we each deal with that is going to be a very individual experience from diagnosis to treatment to death. Brittany and Lauren made their choices and so will we.

 

 

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.

Lifesaver face

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.

One Year Ago…

…in a pumpkin patch far, far away…I was feeling cranky and blue. Distant, perhaps in a fog of mood. It was warm, much like today will be.

Everything changed that day. I had a seizure and got to ride in an ambulance. I was told I had a mass in my brain and that I needed surgery as soon as possible to save my life. I later found out I had stage four brain cancer.

As much as I don’t remember of that day and the next, and the next…I remember very clearly waking up in that ambulance to see the EMT smiling and talking to me with a reassuring voice that stopped the panic before it could even begin. I remember the ER doctor holding my hand and sitting close while she told me about the beast in my brain. I remember the frightened looks on my kids faces as they walked in to see me before they left for home. I remember my husband’s face as he fought to remain calm while he asked all of the questions I would never have thought to ask. I remember the kindness of the nurses and doctors as I arrived at Stanford and settled in for a multitude of scans and tests while I waited for a craniotomy.

It seems a strange anniversary to celebrate, but here I am…alive and functioning. I’ve had some setbacks, but to think where I could be: the risks and potential disabilities as a side effect of brain surgery, the physical damage of chemo and radiation, the financial devastation if we didn’t have insurance, the psychological trauma if we didn’t have such loving friends and family… I could be dead. But I’m not.

As hard as this past year has been, I feel blessed to be here. To have the time to cherish my family, to teach my kids critical life skills and watch them do the things they love – like play guitar and dance, to hold my husband’s hand as we walk down the street, to read yet another great book. All things easy to take for granted when you’re not counting every day as one more chance.

The typical survival rate for someone with a Glioblastoma Multiforme is dismal. As my neurosurgeon told me ‘Now we know HOW you’re going to die, we just don’t know WHEN.’ Well, so far, I’m beating the worst of the odds. The beast is locked away for now and I have a team of doctors and specialists who are the best at what they do. I am lucky to live so close to Stanford and to know that my doctors work together to give me the best care possible. I am lucky to qualify for a clinical trial that just may help make my survival legendary – along with so many other people who will discover they have a GBM.

BUT – the options for brain tumor patients are terrifyingly few. I’ve been lucky so far, but so many have been lost because research into new treatments for brain tumors is dramatically underfunded. Brain tumors are mysterious and complex – just like the brain itself. Unlike so many other cancers, people don’t know about them until they or someone they know and love discovers they have one. Awareness is shockingly low.

There are no known causes and often people have no knowledge they have a tumor until it reaches a large size. I had no significant symptoms until I had a grand mal seizure in a pumpkin patch in front of my children and 300 or so strangers. There are 120 different types of tumors and depending on the location in the brain, even a benign tumor can be devastating to physical, cognitive or psychological abilities. Over 600,000 people in US are living with a primary brain tumor and over 28,000 children.

Help me celebrate this first of what I hope will be many survival anniversaries by donating to the National Brain Tumor Society – an organization committed to raising awareness, advocating for and funding research to help improve treatment options and increase the survival rates of brain tumor patients. My friends and family will be walking on October 26 in the Silicon Valley Brain Tumor Walk – join Team EveryDayLeft Right Left in our march to find a cure. Help us all to become legendary in our survival.

Thank you to everyone who has helped feed, drive, babysit, and care for my family in so many countless other ways this past year. You are loved and appreciated in ways we could never express.

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

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

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

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

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

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

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

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

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

Toxic Chemicals

The weird thing about a grade 4 Glioblastoma Multiforme is that even when there’s no immediate evidence of a tumor in your brain, you still have to continue fighting it as though it’s there, hiding and ready to pounce out from behind the curtain at any moment. Actually, even with lower grade primary brain tumors, you have to treat it so it doesn’t BECOME a grade 4 GBM. Which means that I intentionally ingest toxins each month in an effort to keep the lurking beast behind the curtain – or better, behind a locked door that can never be unlocked again.

Because my platelets started off low, the chemo (Temodar) will drop them below an acceptable level pretty quickly. Which is why I ended up skipping a month of treatment. During that month off, I felt pretty awesome. I had energy and was able to exercise regularly (meaning I walked) without trouble. My thoughts seemed more focused and clear. My long-term memory seems to be in pretty good shape – can’t say the same for my short-term memory, but that’s ok. I went on vacation and relaxed. I was able to chaperone a field trip with my son’s class. Generally, I was feeling more like myself – the self that I remember – than I have in a long time.

I started this month’s chemo on Tuesday night. That puts me at day 4 (I just had to count that on my fingers). I felt so good last month that I forgot what it was like to feel foggy – to have to count 4 days on my fingers. I forgot what it was like to feel nauseous constantly – to have even the thought of food make me cringe, but know that if I don’t eat, I’ll continue to feel nauseous. I forgot that simply climbing the stairs would sap me of energy. I forgot what a burden it is on my husband to have to help with the kids in the morning and then come home to make dinner.

I thought I’d prepared better this time. I knew I needed to stay on top of my anti-nausea drugs. I knew I needed to have easy food on hand – for me, sourdough toast and peanut butter and vitamin water zero become staples. I knew that if I was feeling good at any point, THAT was when I needed to prep dinner or get a load of laundry done or just eat – whatever didn’t make me gag at the thought. I knew that I might not get a lot done – I might need to just sit and read or watch a movie or take a nap – and I had to be ok with that, allow myself to get nothing done. And yet, I sit here feeling slightly shocked at the nausea and feeling guilty for all that I feel and all that I have not done.

He conquers who endures.  ~Persius

Let perseverance be your engine and hope your fuel. ~H. Jackson Brown, Jr.

It’s Not a Tumah. Oh Wait…Yes It Is.

I’ve mentioned that I had no obvious symptoms before that first seizure. But, there it was, a 3.5-4cm tumor in my left frontal lobe – pushing from one side of my brain into the other side. I have an aggressive form of brain cancer – so they guess that my tumor grew in less than a year. They don’t know what causes these tumors, but you can find all kinds of theories. And it’s only natural to wonder. It’s not something any of us should spend a huge (or even medium) amount of time on, because it’s already happened. If someone has built a time machine, THEN we should dig a little deeper. The only benefit of the digging and wondering (and it should probably be done by scientists, not me) is that if we know the cause, we can help others avoid this experience.

Here are some of the theories of cause that I’ve found.

1. PVC exposure. I DID make a marble maze for my son using PVC last summer…but it’s unlikely that cutting one 4 ft piece of PVC pipe into smaller sections would trigger brain cancer. I think they mean PROLONGED exposure. Not likely, then.

2. Tumor Progression. GBM 4 (Glioblastoma Multiforme) can start off as a lower grade tumor. Did I have a lower grade tumor first? And if I did, how long did I have it? Were there signs? What would have happened if there were and we got to it before all this serious business began? We’ll never know and it does no good to guess.  Ok, fine.

3. Virus. Some viruses have been loosely connected to Glioblastomas. Cytomegalovirus and SV40 – these are monkey viruses found in humans as well. I should say right now that I have NEVER owned nor fraternized with a monkey. Cytomegalovirus, from what I can tell from the big words used to describe it, is associated with chicken pox and mono. Both of which I had when I was little. It’s true. Both of them. The virus can remain latent and infects 50-80% of people in the US – I read that on the internet, so it must be true.  There may be some truth to this one, but if there’s a link, why is a GBM 4 so rare.  Hmmm….

4. Alcohol consumption. I do enjoy (or used to) the occasional cocktail and am, by marriage, obligated to know a little something about wine. I would hardly say that my alcohol consumption was excessive or a significant risk factor. If it IS a risk factor then I know any number of people who should be having brain scans right now. I don’t buy this one.

5. Ionizing radiation (x-rays, essentially). I started getting x-rays when I was about 11. I have scoliosis and it was just below the % of curvature where they would have put me in a brace. I don’t remember how regular these were, but I know I’ve had LOTS of x-rays over the years. Was this the cause?  In reality, probably not. But I always wondered why the techs went behind a protective wall if x-rays were so safe. Remember that radiation therapy also has a risk of triggering brain tumors – how’s that for irony?

6.  Diet. Well, I’m vegan (22 years) and I had already made a very conscious effort to cut out most of the processed food in my diet – which isn’t easy, by the way. I changed other aspects of  my diet about 2 years ago (maybe longer) to try and control my psoriasis (yeah, I got that too). I cut out nightshades (tomatoes, eggplant, peppers) and some other things – it worked really well for a while. But then it didn’t – such is psoriasis. Those things I stopped eating, interestingly enough are anti-angiogenic. Hmm…could that be it – have I inadvertently fed cancer cells lying in wait in my brain? Could I be doing ‘vegan’ wrong? Should I switch to a Raw diet? Do I need to be juicing? While any of these may be true, we just don’t know. Continuing to look at my diet can’t hurt.  There are a lot of great ideas and information out there about the relationship between diet and cancer. Some suggest diet INSTEAD of chemo. I don’t think I should risk that experimentation, but I’m certainly willing to add diet changes into the mix.

The lessons here are that we still don’t know a whole lot about cancer and the internet (Wikipedia, specifically) is largely an unreliable source of information, even if they use big words and sound convincing. We can spend a lot of time trying to guess or we can take a leap of faith and try some things JUST in case they might help – I’m talking about diet, of course. I’d say that it also helps to stay positive (except for the occasional bad day); surround yourself with people who build your hope with love, prayer, healing energy – they all help; believe that you’ll be legendary in your survival; and avoid the statistics you can find online since we all know that we can’t believe everything we read on the internet.

Misty Watercolor Memories

Ah, the frontal lobe…memory, emotion, speech.  Let’s take a look at memory for a minute.

Everyone forgets things every day. Ever walk into a room and forget why you went in there?  Gone to the grocery store and realized the moment you got home that you forgot the one thing you really needed to buy? Forgot a birthday of a loved one? Forgot to pick your child up from practice? You know what I mean. Everyone forgets. Our lives are over-busy, over-scheduled and over-stimulated.

While I was recovering from surgery – idle time is not good for me – I was going back through the previous year and wondering…was that an unreasonable amount of forgetting? What about that? Now, that wasn’t normal forgetting, was it? I was looking hard and finding all kinds of examples of where my brain may not have been functioning ‘normally.’ Many people have told me when I’ve mentioned these examples that they experience the same kind of forgetful moments.  So, were they signs or was I just a regular ol’ over-worked, over-tired, over-stimulated human being?  I really don’t know.

Then, I have days that I straight up don’t remember. I have days or moments that I feel like I’ve forgotten, but then I get a prompt from my husband and I remember, mostly. I have moments that if I think hard enough about the context around the moment, I MAY remember. Then there are those strange, unnecessary memories that I pull out of my head without hesitation – like our phone number from 10 years ago or a name of an actor from some random show I watched twice in the ’80s.

The most unsettling, as you might imagine, are the days I don’t remember at all. The days in the hospital before surgery. Most of the days following surgery. Some moments during chemorad. The days after my second seizure. Having absolutely no memory of those days, having to be told what happened, what I said, what the doctors said is very strange and frustrating.  Luckily, I didn’t do or say anything during those times that I’d be embarrassed about – so it’s not really like drinking WAY too much and blacking out. I don’t like feeling out of control, which is why I’d never make a good drug user.  These days that I have no memory of are terrifying to me (and frankly to my husband and kids), but they’ve luckily been few. I’ve had people who love me there who can later remind me that it was all ok and I didn’t dance on the tables in my underpants trying to sing some MC Hammer.

The anti-seizure drug (Keppra), when my dosage was increased, made my memory worse. It’s a common side effect (not an uncommon one, like possible brain tumors from radiation treatment…for brain tumors.) I think it got better as I acclimated to the dosage. But, I find that sometimes my internal thoughts veer off from the words coming out of my mouth. Most of the time, I catch it and get back on course after explaining what I really meant to say (like when I told my husband that my sister-in-law really said TORNADO warning, not TOMATO warning), but sometimes I don’t. I used to be able to make lists in my head and remember them more than 5 minutes later. I’ve always been a list maker (and yes, I’ve sometimes written down ‘take shower’ just to have the satisfaction of crossing it off), but now I have to write it down immediately or I’ll forget. Even the simple things – do laundry, fill bird feeders, clean up that huge pile of papers sitting in the middle of the floor that you have to step over to get out the door (ok, maybe not that one). I used to be able to multi-task, now I can’t do more than one thing at a time if one of those tasks requires any level of concentration. I have to write things down to remember them most of the time. I’ll sometimes get an email or voicemail from a friend or family member and if I can’t respond immediately, I’ll forget to write/call back for days until I happen to stumble across it again (my apologies folks, but don’t take it as a sign that I’m ignoring you, I’ve just forgotten temporarily.) That’s not so bad in the grand scheme of things that could have happened to my memory. And I’m learning that maybe my expectations for myself are sometimes a little too high and looking for those examples of imperfect memory is probably a waste of my precious time.

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.