Confession

When you find out you have a GBM, it’s a terrifying and lonely experience. Some may seek other patients through support groups. Some find others through various online sources – Twitter, Facebook, etc. It’s important to find people who have an understanding of what you’re experiencing, to know you’re not alone. Caregivers need those contacts too, sometimes even more critically than the patient. Perhaps you get to the point where YOU can provide that support to others who find themselves with the same or similar diagnosis. It can be very inspirational and motivating. But it can also be very emotional.

Seeing your friends and/or loved ones decline or die – as many with GBMs do eventually – can become too much. Being reminded of what may be in store for you can become more than you can handle. Losing so many people to a disease you also have can send you into a serious downward emotional spiral. It eats away at hope and distracts you from the joys of everyday life. It’s your fate, be it tomorrow or 2 years or 10 years. Watching or hearing that someone is at the end of their journey can pack a wallop to your positive thinking.

And then there’s the guilt. You know that there are others out there that need your support and encouragement. You know that they may be suffering – emotionally and/or physically. You know they’re probably scared. You know they’re worried about their families. And yet, you’re afraid to get too close, become friends only to watch them suffer and potentially lose their battle. At least I am. Sometimes it’s easier to just stay in my little bubble of fear, self pity, and self imposed ‘ignorance’. I’m not strong enough to bear the burden, to watch them succumb to this disease. I’m selfish and uncaring, I’ve abandoned others, I’m emotionally weak. At least those are the thoughts that flow through my mind. It’s hard to admit this publicly, but I’m pretty sure I’m not the only one.

It’s okay for us to admit our weaknesses and fears throughout this process. It’s a whirlwind of emotions and there are good days and bad days. Other patients may have the strength to experience loss after loss and that ability is like a super power. I wish I had that strength, but knowing I could be the one suffering as I die at any point is too much for me to handle. If someone asks for my support or advice, I’ll be right there to offer it. But then I’ll likely retreat back into my hobbit hole of ‘ignorance’ until the next request. Honesty and guilt while compartmentalizing my experience between an open ended death sentence and managing my everyday life – just another part of having an aggressive malignant brain tumor.

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 Irony

There are lots of things in this crazy world that are ironic. Just ask Alanis Marmoset (I know it’s Morissette, Marmoset is just more fun to say.) Rain on your wedding day and all that.

The irony in some of the treatments for a myriad of conditions are ridiculous. I guess that’s likely true for most medical treatments of one kind or another. Just listen to the legal warnings at the end of each commercial for the latest drug. Antidepressants that may cause thoughts of suicide. Erectile dysfunction drugs that may cause erections that won’t go away (yes, I said erection.) Blood pressure medicine that may increase your blood pressure or cause a heart attack. Any number of biologics carry multiple risks, but risks that so many are willing to take to manage an illness or relieve their pain.

With cancer, most of us willingly accept and take those risks and more – chemotherapy, radiation, experimental drugs.

Chemotherapy kills cells, attacking the cancer, but also attacks healthy cells. It makes you feel like hell. Perhaps because of this effect, it carries the risk of serious infection and potential development of unrelated cancers. Irony.

Radiation treatment specifically for brain tumors – targeted or more broadly focused – carries the risk of brain swelling, brain damage, OR brain tumors. Irony.

Anti-seizure medication or combinations of medicines carry the risk of triggering seizures. Irony

Some drugs – like antibiotics, meant to rid your body of potentially deadly bacteria, can reduce seizure thresholds and trigger a seizure. With a history of status epilepticus, it might kill you. Irony.

Experimental drugs carry a series of risks and depending on the phase of the trial, some of those risks are unknown – hence, why they’re in trial. These drugs can trigger new illnesses, potential fatal reaction or extend the impact of the disease you’re trying to fight. Irony.

Most of us are willing to take the risk, but the irony is not lost on us. While we battle a disease that is trying to kill us, we risk possible death and do so willingly. Ironic indeed.

The trick is knowing what to ask your doctors about the risks when you’re prescribed medicines or begin a new treatment, take the time to consult with your pharmacist any time you start a new medication, and read those long lists of potential side effects for the medications you’re taking to understand any risks and contraindications. Essentially, be informed and don’t assume that what you’re prescribed is safe – especially if you have multiple doctors – as we all seem to in the world of cancer. Carry around a list of your medications – with doses – so you can make sure you don’t forget any of them when you are discussing new treatments. Don’t become a cautionary tale and get added to the next Alanis Marmoset song about the many ironies in life.

 

As an aside – there are thousands of plants in the Amazon jungles alone that can be used to treat a wide range of illness and disease – including cancers – but in the name of ‘progress’, those forests and all they offer the world are being destroyed at incredible rates. Not only are we destroying the homes of the indigenous people, we’re destroying potential sources of a cure. Irony or ignorance?

 

 

I’m Fighting a Battle – No Really I Am

I’ve heard a lot lately about concerns in using words like ‘fight’, ‘battle’, ‘win’, ‘lose’ because they are battle references and some take offense to them being used to describe their experience living with and [unknown term] cancer. They feel that ‘survivor’ is a better term. I’m not sure how that works actually while you’re going through treatment and doing all you can to rid yourself of this disease.

This is a quote from Kate Granger in a recent Guardian article that sums up the argument fairly well:

As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.

Kate Granger

It implies that if I use the words ‘fight’ or ‘battle’ that I’m not living as well as possible, coping, accepting, being positive, or drawing on the support from those closest to me. I call bull shit. My short-term, achievable goals are to get through my next MRI with flying colors and teach my kids to be kind to each other and everyone around them.

I can do all of those things to help me become a ‘survivor’, but let’s be honest – I’m battling cancer. I’m fighting against the malignant cells that mysteriously popped up in my brain. They are attacking my body and I don’t accept them as a symbiotic partner in my life. I want them gone, never to return again. I do not welcome them – I consider them trespassers and they should be prosecuted to the full extent of all treatment options available. I will fight them to my last breath. It IS a battle. Perhaps it’s a battle of wits, a staring contest, or a thumb war, but it’s definitely a battle. Saying that ‘battle language’ is negative and does us a disservice as cancer patients is ridiculous (IMHO.) I don’t deserve to have cancer, nor does any one else who has it. We have a right to be angry. It doesn’t mean we’re not hopeful, positive, living life as well as we can, or drawing on the love, prayers, and support of our friends and family.

I’m angry. I’m hopeful. I’m positive. It doesn’t mean I’m not fighting a battle. It doesn’t mean I can’t beat this cancer. A little anger is healthy (letting it fester and prevent you from being positive is not so healthy.) I may not beat this, but I’m sure going to fight like hell as it tries to take me down. Yet, I’m living every day with love, joy and gratefulness for the moments I’ve got left with my family and friends.

I’m not sure there are better terms to use under the circumstances. ‘Survivor’ is what we all strive to be and yes, if it hasn’t killed us yet, we ARE survivors. But until someone comes up with a better option, I will battle on. I will gather my forces and protect the castle (‘I fart in your general direction’.) I will raise my symbolic weapons in the form of chemotherapy, radiation and clinical trials. I will not raise the white flag, I will continue to strive for a ‘conscious uncoupling’ from my cancer in any way possible.

The battle rages on.

2 Year Anniversary

Well, I did it. I beat the average survival statistic for a patient with a Glioblastoma Multiforme – the deadliest of all the brain tumors. I have brain cancer thanks to the mysterious golf ball size of aggressive malignant cells that grew in my brain. It’s been 2 years since that beast was removed by my brilliant neurosurgeon.

In those 2 years, I’ve gone through chemo and radiation treatments (which ironically has a risk of creating brain tumors) and began a clinical trial intended to train my body to fight the cancer. I’ve had 2 seizures (not counting the first) that have landed me in a hospital bed – the second one being life threatening. I spent months without driving privileges and still managed to get my kids to school and go to the grocery store thanks to my mom and my kind neighbors. My mom’s love and caring have provided my family with a consistent ‘normal’ life and have allowed me to focus on healing and fighting. I have grown even more fond of my neighbors and our spontaneous driveway parties and planned outdoor movie nights. I’ve napped, a lot. I went to New York with my husband. I’ve witnessed his courage, strength and love each and every day. I went to New York, London, and Paris with my family. I’ve read numerous books – most of them good. I met Diana Gabaldon and got her autograph. I lived through a kitchen remodel (not recommended while going through treatment.) I adopted a dog who is both sweet and crazy needy. I’ve watched my children continue to grow and thrive. My son’s guitar skills, love of soccer, creativity, ingenuity and love for some adventure amaze me every day. My daughter’s kindness, persistence at resolving social conflicts, strength in the face of adversity (like soccer ball kicks to her face), her natural skills in caring for young children, and her love of books and learning make my heart swell with pride. I have so many more things to be grateful for as I’ve attempted to live every day left in my life with joy and appreciation for the moments I’ve been blessed to experience in my uncertain future.

But the fight continues on. I’m fighting to still be here to celebrate my 4 year anniversary and my 6 year anniversary and so on…

Thank you all for the love, support, prayers and healing energy you’ve been sending my way over the last 2 years. They’ve gotten me to this point. I’d appreciate the continuing support to get to another anniversary.

As we continue the debate began by Brittany Maynard’s decision to move to a state that supports ‘die with dignity’ laws, let’s not forget the thousands of other people fighting this horrible disease and other types of brain tumors. We should also be discussing what can be done to develop new treatments and search for a cure so we don’t have to think or make decisions about how to relieve our own suffering in our last moments of life. Many of us with GBM’s have survived for extended periods of time, even if we received grim and specific prediction of the time we’ve got left. Fight on and see what miracles arrive and do your part to help others live longer in the future.

If you feel compelled to help focus on the brain tumor element of this story (not saying the national dialogue around ‘die with dignity’ is unworthy or less important), make a donation to the National Brain Tumor Association or any other organization of your choice that helps support research for treatments and cures, support for families and patients, and raise awareness of the other side of Brittany’s story.

 

Childhood Favorites

Your favorite childhood junk foods.  Have you tried them lately?

I recently told my kids about Circus Peanuts. How when I was a kid, my friend and I decided to eat a whole bag. We decided that they were, in fact, disgusting. We felt quite ill for the rest of the day.

Doubting my claims (as any strong-willed child does), my daughter insisted that she try them. Thus began the Great Circus Peanut Hunt of 2014. While they’re a classic (Me: WHY?) finding them in all of the usual places proved to be difficult. But with persistence and determination, we found some. In the sixth store (yes, I willingly went to 6 stores as any strong-willed mother would do to prove to my daughter that Circus Peanuts were not the delicious confection she was imagining in her mind) we finally found them…on sale. She had convinced herself that I was clearly wrong and decided that 2 bags were needed – they were on sale after all. It was after one bite of the first orange, ‘marshmallowy’ classic that she declared they were disgusting. I resisted my urge to gloat and tell her ‘I told you so!’ Instead, I just laughed.  Side note: if anyone wants 2 bags of Circus Peanuts – one opened, but still contains all but 2 ‘peanuts’ – let me know.

Speaking of sugary orange things… I also had a fondness for orange soda when I was young. So did my friend (different friend) and we took a couple of bottles to the playground with us. We thought we were pretty cool, sitting in the park drinking Orange Soda – which honestly tastes only vaguely like oranges and more like orange colored, bubbly sugar-water IMHO. Then we decided to go on the merry-go-round – not the kind with the horses, but the metal spinny kind that is powered by hanging on and running around to get it going before you jump on to enjoy the rapid whirly spin. Well, turns out that spinning in circles and orange soda don’t mix well for my friend. Up it came and I’ve never been able to drink Orange Soda since.

We’ve all probably had experiences like these that have destroyed our memories or experiences with favorite childhood treats. But there are others that we might look back upon fondly. BUT what if you tried them today? Would they be exactly like you remember? Or would you find them to be disgusting after your palate has matured over the years?

My son and I watched a series of videos about Americans trying junk food or local delicacies from around the world. It was an interesting way to kill an hour. Some were quite funny, some weren’t. But, I digress. One of these videos had the cast of characters trying their favorite childhood junk foods. Between the Circus Peanut Hunt of 2014, memories of Orange Soda vomit, and this series of videos I got to thinking…

We discussed it at dinner last night and discovered that our favorite childhood treats were the ones created and carefully prepared by our mothers and grandmothers (not to be sexist – that’s just who prepared them in our families). Peanut butter, rice crispy treats with a layer of chocolate on top. Corn Flake candy (corn flakes and chocolate.) Peanut butter balls dipped in chocolate. Apricot-coconut cookies. Ground raisin, oatmeal cookies. Strawberry rhubarb sauce. The list could go on and on. Disclaimer: both our mothers and grandmothers were from Minnesota – the land of delicious home made treats filled with love…and chocolate…and peanut butter.

We also discovered that some of our favorite (not home-baked) treats had special meaning to us or brought back fond memories of family, friends or first experiences.

What are some childhood treats or junk food do you recall and have you tried them recently?

We’ll be waiting for your replies while we’re making Corn Flake candy after school today.

 

Thank You!

It’s hard to be an advocate. But it can be done. We can imagine an advocate as someone who travels around the country representing an organization or group of people with a cause. We can imagine an advocate as someone who supports children/families in a court setting when they need a little extra support. We can imagine an advocate who volunteers their time for a cause they feel passionately about. But, you can be an advocate simply by being there, supporting someone you care about, learning more than the surface details and telling people about what an organization is there for, walking in an awareness driven 5K, or making a donation to a non-profit of your choice.

Advocacy comes in various forms and each of you can be an advocate with as little or as much time as you wish or have to spend.

With that in mind, I’d like to send out a heart-felt Thank You! to all of you who donated, sent messages of encouragement and support, re-posted messages, helped us raise donations, told friends about the National Brain Tumor Association, and took the time to walk with us this last Saturday in the second annual Silicon Valley 5k.

Team EveryDayLeft Right Left had at least 34 walkers (I’m sure I’m missing someone in my count) and 2 dogs with us. We had family and friends who traveled across the state, across the bay and flew in from out-of-state for a special visit. There are so many more who weren’t able to join us in the walk, but were there in spirit. The support and love we receive every day as we go through this journey always amazes me and I can’t express how grateful we are to have such caring friends and family around us. Your support warms our hearts and fills us with hope.

Our team was the top fundraiser (again) and your donations will go to help develop programs to support families, raise awareness, and contribute to research for new treatments and hopefully a cure.

When I walked (and talked) last year, I hoped I would be alive to attend again this year. Well, I’m still here and look forward to attending next year!

With all of our hearts, we thank you!

Team EveryDayLeft Right Left walking for hope.

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Life With a Chronic Illness

I saw this video and felt I needed to share it. Morgan articulates what its like to live with a chronic illness in a way that illustrates the struggle, the loss, the prejudice, the heartbreak, the fear, and the hope of it all.

Morgan Grindstaff’s “What is Cystic Fibrosis?”

While Morgan is living with Cystic Fibrosis and not a brain tumor, his words resonate. We’re all hoping to survive.

Warning: there is some language that the more sensitive of you may find offensive.

Unchaperoned Meals

When I was young, my dad traveled on business trips regularly. My mom traveled less frequently, usually to Las Vegas to play some Black Jack or chat with the counterfeit characters lingering on the street corners about what they plan to do with their lives when they decide to climb out of their costumes in the dangerous heat. Ok, not really, but it’s a funny image thinking of my mom counseling strangers in Elmo-ish costumes. None the less, my mom DID travel…just not to Las Vegas. And everyone knows we played our Black Jack games at home.

These brief experiences with single parenting correlated with some culinary adventures.

When my dad was gone, tuna casserole was invariably made, complete with the potato chip topping. My dad HATED tuna casserole (or ‘hot dish’ if you prefer), so it was our opportunity to partake in this traditional midwestern delicacy.

When my mom was gone, we ventured into Spam and beans – previously only a camping cuisine. My dad and I quickly determined that Spam and beans tastes MUCH better 3 days or more into a backpacking trip and should be reserved only for those occasions.

When my husband travels, I venture boldly into child oriented meals. ‘Chick’n’ nuggets, macaroni & ‘cheese’, ‘vegan pigs’ in a blanket, plain noodles with margarine, grilled cheese sandwiches…you get the idea. We’ll also take the super lazy route of having cereal for dinner – enticingly called ‘Breakfast for Dinner! Yay!’ Last night, my children decided to make our evening meal. We had toaster waffles and ‘sausage.’ These meals aren’t particularly healthy, but I’m certain we’ll recover. We survived the tuna casserole and the Spam and beans after all.

What are your favorite culinary adventures when you are left unchaperoned?

Attack Of The Killer Cells!

It’s a little like the Body Snatchers. We look a lot like we used to, but something is off. We have begun fighting our own bodies. We are being attacked by killer cells! Some of those killer cells are defeated, some are just put into hibernation temporarily and they return again and again. Sometimes we win, sometimes we lose, but the fight goes on.

What helps with this fight is funding research, treatment options, and advocacy. The National Brain Tumor Society is one of those organizations that helps us with that fight. They are working hard every day to get us beyond ‘extended survival rates’ to ‘a cure’.

On September 27 I, my family, and many of our friends will be walking in the Silicon Valley Brain Tumor Walk. I invite you to join the team (EveryDayLeft Right Left – get it? Cuz it’s marching?) if you’re local, and donate to the team if you’re on this planet. Help us spread the word and do our part to raise awareness and offer some hope to those fighting brain tumors that someone is working toward a cure.

If you donate and would like to do it in honor of a loved one or friend, add it to the notes and we’ll carry signs on your behalf. We do this not only for ourselves but all of the other people in the world who have been impacted by brain tumors.

If you’d like to join the team, register and set a fundraising goal for yourself (or set your goal at whatever donation you make yourself.)

Team EveryDayLeft Right Left

Thank you!