Shout Out For The Boobs

One benefit of a primary brain tumor is that it won’t spread to other parts of your body. No Metastases! yeah.

That can’t be said for other types of cancer.

Breast cancer for example. Breast cancer can spread to lymph nodes, to the brain, to bones, etc… The blood/brain barrier creates a challenge, but it can be overcome. It’s treated with different chemotherapy than a primary tumor, but it can be treated.

We know much more about breast cancer thanks to research, development of new treatments, earlier detection, and increased awareness. If you’re not doing regular breast exams, you should be.

Because of the research, we know there’s a familial relationship to risk factors. There are gene mutations that can increase your risks of developing breast cancer (BRCA1 or BRCA2). There are rare syndromes (like Cowden’s Syndrome) that dramatically increases risk of breast cancer (by 85%) along with a long list of other cancers. (Read my friend’s blog about her own experience with Cowden’s: https://hopeforheather.wordpress.com

There has been a lot of press coverage recently (thanks Angelina Jolie-Pitt) about preventative double mastectomy for those with increased risks. I can imagine that even thinking about this decision is incredibly scary and difficult. A mastectomy is not an easy operation, a double mastectomy is doubly difficult. I understand why women make the decision, but I can only begin to understand the thoughts and conflicting emotions.

I have many (too many) friends who have been diagnosed with and undergone treatment for breast cancer. My husband’s grandmother was diagnosed and treated (including a mastectomy) in the 60’s. She lived to be 100 years old. Survival is possible and can sometimes be a legendary story.

I have a dear friend who has just made that pre-emptive decision to have a double mastectomy. She has two small children (younger than mine) and she doesn’t want to risk having to live with the fear of her cancer growing and spreading. The surgery is underestimated and under appreciated for how difficult it is to go through and recover from – not including the reconstructive process.

She is one of the kindest, most loving people I know. She taught both of my children in kindergarten. She taught my neighbors’ children. She always has a smile on her face and a hug to give. She’s approached her cancer with an amazing amount of humor and hope. She’s willing to do anything she can to be there for her children through their lives. Her positive attitude and enthusiasm for the chance to get ‘new boobs’ is genuinely amazing.

As a teacher, the most under appreciated job around, she’s got limited leave and resources to take the full doctor prescribed amount of time off  from work to recover. Another friend started a GoFundMe campaign to help support her family so she can take that needed extra time. Teaching kindergarteners is not a low stress, sedentary job. If you’d like to support a wonderful woman and family in their fight with cancer and survival, consider making a donation here: GoFundMe

 

 

 

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.

 

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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Ice Buckets for Sale

Ice buckets. Ice buckets everywhere.

I know the wildly popular Ice Bucket Challenge has raised a lot of money and some great awareness for the ALS Association. ALS is a disease involving the motor neurons in the brain and spinal cord. It is devastating in it’s ability to slowly take away a person’s ability to control their body until they ultimately die.

The Ice Bucket Challenge is sweeping the nation (if not beyond), causing multitudes to pour freezing water over their heads and then challenge others to do the same all in the name of ALS. Hopefully all of these people have gotten out their checkbooks once their shirts were dry and made a donation. While it’s mildly entertaining to watch your friends and favorite celebrities dump ice over their heads, eventually it ‘jumps the shark.’ The message about ALS and how horrible it is, not only to the person afflicted but to their families, begins to get lost in the freezing merriment and giggling. How closely are people REALLY paying attention to the disease this gimmick is trying to draw attention to? Eventually, they start talking about who looks good in a wet t-shirt instead of the reality of ALS.

ALS is definitely worthy of the donations it’s received during this phenomenon. It’s raised something around $23M and certainly some awareness, which is amazing. A bucket of ice over your head has very little, if any, relationship with ALS, but it worked. Despite the overwhelming success, it’s frustrating that people need a gimmick of any kind to make a donation to a worthy cause.

While we don’t aim to raise $23M, we are trying to do our part here in the Silicon Valley to raise funds, increase awareness, and get a little fresh air for those of us living with and fighting brain tumors and cancers. Join our team to walk on September 27 or make a donation to team EveryDayLeft Right Left to help us reach our own impressive fundraising total for the National Brain Tumor Society. Last year we raised nearly $23K and it would be amazing if we could get even close to that amount this year. No ice buckets required, but you can still challenge 3 others (and so on) to make a donation and/or join the team.

Oh, and if you have any incredible ideas for instant-viral-fundraising, let me know. No association to brain cancer necessary.

Want To Help?

Rant warning

We live in an age where women (and a few men) are famous just because they’re rich; where the ‘media’ follows them around just to get that one great photo; where ‘reality shows’ outnumber anything creative; where our sense of self-worth is based on our bank accounts or our ‘physical beauty’; where apathy outweighs empathy.

Why is it that ‘pop musicians’ get more attention for their bad decisions and are made millionaires because they perform songs written by other people? Why do media companies spend fortunes creating tv shows that follow families that have contributed little to better society or follow celebrity newlyweds as they navigate through their private relationships? Our priorities seem to have gotten jumbled along the way. Kindness and generosity seem to have waned. Our politicians seem to be working for the lobbyists rather than the people who elected them – afraid to make the hard decisions because it might risk their ability to be re-elected. Our obsession with celebrities has become more important than community engagement. Toddlers and Tiaras is a thing. Westboro ‘church’ selfishly pickets a family’s grief at a funeral for their loved one?! No one would consider that christian, it’s just plain hate.

Those people who are fighting for the less fortunate, for accountability of our largest corporations (Monsanto, for instance), for social programs that provide job training, safe havens for at-risk youth or victims of domestic violence, outreach programs to support the mentally ill or the aging populations seem to be fighting an unending uphill battle. Our schools are more focused on standardized testing than teaching life skills, problem solving abilities, recognizing individual interests and abilities. They remove enrichment programs like art and music which help provide the only experience and appreciation for the arts that some children will receive. Recess and physical education are being cut or dramatically reduced for the sake of classroom time when most children need to exercise and move their bodies to prepare their minds for learning and develop healthy habits.

Why are they called ‘Random acts of kindness’ rather than kindness just being a normal part of how we treat others in our communities?

Why aren’t we funding research to develop new treatment options to extend lives or cure diseases? Is it there that much apathy? Is it because it’s not important when it doesn’t impact you personally? Is it because these diseases kill so ‘few’ people that it’s not worth the money? Is it because it’s not profitable? Why are we and our families less important than the Kardashians or Honey Boo Boo?

This is the society that we live in. I think we can do better, how about you? Do you want to help improve our world? Helping others is a powerful, empowering, rewarding experience. So do something, anything to allow yourself that experience.

Pick a cause. Become an active participate. Become an advocate for change. Donate, fundraise to support an organization’s efforts. Talk about it, write about it, raise awareness. Volunteer your time. There are so many ways to help. Don’t make excuses for not participating in some way, any way.

Some options that are close to my heart (not a complete list):

National Brain Tumor Society

The Humane Society

Humane Farming Association

Sierra Club

National Psoriasis Foundation

National MS Society

 

Do something. Help. Give. Act.

Friend With a Brain Tumor?

Do you have a friend with a brain tumor? Do you have friends who have friends with a brain tumor? Do you have a family member, perhaps a distant cousin with a brain tumor? How about some random acquaintance at work, does he/she have a brain tumor? Does a close family member have a brain tumor? Do you have a brain tumor?

Every body knows someone who has or had cancer of some kind in other parts of their bodies – there are really too many out there. But chances are you know someone who’s experienced living with a brain tumor – primary or secondary. You may have known someone who died from brain cancer. Maybe you just heard about someone who was diagnosed with a brain tumor, but you really don’t understand what that means.

When you start to look around and listen to the rumblings, you and everyone around you has been touched by brain tumors/cancer in some way.

The 120 different types of brain tumors are indiscriminate of age, sex, ethnicity, race. There are no known causes. There is no known cure. There are rarely severe symptoms to prompt CAT scans or MRIs to identify that there’s a brain tumor growing. The first symptoms for most are a seizure, motor control issues or speech difficulties. Not all tumors are cancerous, but they all impact us since they’re in the control center of our bodies. Some tumors start off benign and then grow into a malignant tumor that tries to devour your brain. Regardless, treatment options are very limited.

In the 18 months since my own diagnosis with a brain tumor/cancer, I’ve learned of far too many acquaintances or acquaintances of acquaintances that have also been diagnosed with a brain tumor or cancer. Is it that the numbers are increasing or is it like that car phenomenon – when you ‘never’ see a car until you have a conversation with someone about said car and then you see them EVERYWHERE.

Hopefully, it’s not an increase in cases. It is disconcerting though when all of these other cases start appearing before your eyes once your own life has been touched by brain tumors/cancer. Those people fighting with their brains have always been there, we just haven’t noticed. It’s enough to make you feel a level of guilt for not knowing, for not doing more to support them and their families. Now that you understand what a brain tumor or brain cancer is capable of doing to you and your family, you feel guilt for not supporting people you never knew existed before you became a member of this horrible, elite society.

As is often the case when someone you know is first diagnosed with cancer, you don’t know what to do to help. You may not know how to start a conversation. You’re afraid to ask. You make so, so many assumptions about what’s happening. Or perhaps you ignore it altogether because it terrifies you.  When you see them and they don’t look sick, maybe you’re relieved that they’re ‘cured’ and don’t need to address their experience.

Having gone through the bad days, the REALLY bad days, and have been lucky enough to have many good days, I’d offer a few tips (from my perspective) on how to interact with someone diagnosed with brain cancer:

1. We will designate a family member who understands what’s happening to provide updates to those people who need to know. This person will NOT be the patient, their primary caretaker (in my case, my husband) since they are already over their heads with shock, research, information overload and serious decision-making. They’re dealing with fear, terror, worry, anger and healing. Please do not try to ‘go around’ this designated family member. Respect our privacy as we process how are lives have changed dramatically and figure out what to do next.

2. If you want to help, offer to have the kids over for play dates (not therapy, PLAY), drop off food – this is NOT the time to try that new recipe by the way, help take care of the animals left at home, make sure the garden stays alive, drop off movies or magazines… Notice these are all things that do NOT involve short or long visits. Everyone is overwhelmed and exhausted – having to ‘entertain’ will just make that worse (and don’t say you don’t expect to be entertained – when someone comes into your home, you naturally feel like you need to be a good host.)

3. Try not to start every interaction with ‘How are you?’ Because, really, you know. We’ve just received devastating news and have likely gone through brain surgery and are facing months on chemo and radiation. How would YOU feel? I understand that it’s a natural question and its well-intentioned. But if it’s asked too many times, it begins to feel like you should just make a recording and hit PLAY each time it’s asked.

4. Help take care of my caretaker – he’s scared out of his mind too. He’s trying to be my advocate, make huge decisions, keep it together emotionally, take care of our children, and be my body-guard – trying to keep people away while we process what’s happening as a couple. Once things calm down a little, take him out for a beer, LISTEN to him, go for a hike to look at a beautiful view, remind him to take care of himself, ask him if he needs anything (or better yet, make some suggestions on how you can help), let him cry without judgement or attempts to placate and remind him to shower and brush his teeth.

5. Remember that just because I have cancer, I’m still me. I have not regressed in age – don’t treat me as if I’m all of a sudden a child again. Condescension or offering theories on why I may have gotten cancer or suggesting things I might want to do in terms of treatment doesn’t help. At all. Not one little bit. Respect my decisions about treatment, period and treat me like the adult I am.

6. My cancer is not about you. If I don’t want to talk to you or see you, don’t take it personally. If I ask you to leave after a short visit (which all visits should be), don’t take it personally. Don’t tell me how devastated you are about my cancer. Don’t ask me about my cancer every time you see me – take my cues and ask me about every day things and tell me about your every day things.

7. Read about brain tumors/cancer. Understand the difference between them. Educate yourself and don’t assume that it’s a death sentence. Don’t tell me about all of those who’ve lost their battles, give me hope with the positive stories. However, when I’m doing well, don’t assume I’m ‘cured’. There is no cure for brain cancer. Even if I have no sign of a tumor at the moment, it will likely come back at some point. Help me fight to make sure it’s a long, long time from now. Don’t tell me it’s all going to be ok, because it is NOT ok. It will never be ok. Don’t pity me or others in similar circumstances. No one did this to us. Understand that I’m fighting, we’re fighting every day of our lives. Know that we’re all hoping that one day there WILL be a cure. Know that we’re all fighting the odds to try to live as long as we possibly can. Pray, send positive energy, and hope along with us.

8. Don’t be afraid that I’ll have a seizure at any moment. I’m taking medicine to control/prevent my seizure disorder. But ask what you should do if I happen to have one.

9. Brain tumor/cancer patients need the support of family and friends. But no one can really know what they’re going through better than another brain tumor/cancer patient. Ask that person you know, or the person you know who knows someone if they’d be willing to talk to that newly diagnosed individual. 99.9% of the time, we’ll say yes. We know what its like. We can offer a willing and patient ear, without judgement. We can explain what they might expect. We can refer them to resources that will help them learn more. We can discuss clinical trials and what to ask the doctors/coordinators. We can share what our own experience has been on trials. But most importantly, we can reassure them that they’re not alone.

Support groups aren’t for everyone. General support groups often don’t provide the support that brain tumor/cancer patients need. Specific brain tumor/cancer support groups will likely be better. Either way, know that some people will find a support group helpful, some will not.

10. Understand how my brain tumor/cancer has changed me, understand that even if my tumor is on hiatus, I still have a brain injury thanks to the neurosurgeon cutting out a piece of my brain. The impacts might be obvious or invisible. For me, I have short-term memory loss, I will stammer, I will forget common words or references – or use the wrong words. Have patience and don’t complete my sentences for me. Don’t make me feel bad if I tell you something for the third time this week. On occasion, I have slight balance issues. I can’t take anti-histamines, so pollen is more evil than usual, requiring me to stay inside some days. Once a month, I will walk around with an ice pack on my leg. I have not lost my mind or received a strange, repetitive injury. I’ve received my vaccine injections and am extremely itchy and ice helps.

11. Donate to the cause to support research. We’ll be walking every year to raise money for National Brain Tumor Society. Help us raise money and awareness. Walk with us to show your support and possibly get a free t-shirt for joining Team Every Day Left.

Brain tumors aren’t as uncommon as you think if you listen to the rumblings.

 

 

 

 

But You Don’t LOOK Sick?!

When you don’t have visible scars, noticeable physical impairment, or speech impediments (and can still use $20 words like impediment), it’s hard for people to understand that you’re fighting an illness or trying to manage a health condition. Sometimes those of us fighting that illness can even forget. We call those ‘good days’.

Once our hair grows back and looks relatively normal, once the effects of our last seizure wear off and we can stop wearing sunglasses under fluorescent lights, once we acclimate to our new drugs or new doses (and our stammers and memory lapses ease up) we seem like everyone else walking around in the world.

But, as much as we wish we were, we aren’t just like everyone else. We have psychological scars and anxiety every day about having another seizure, tumors growing or coming back, having a brain bleed, or running out of treatment options. This is a kind of anxiety that ‘everyone else’ doesn’t experience. We have invisible effects of our tumors or our treatments – surgery, radiation, chemotherapy, anti-seizure medications. We can’t concentrate for longer than 5 minutes.  We struggle to read or write even simple things. Our impaired balance prevents us from riding a bike. We get exhausted when we try to do too much or are surrounded by too much stimulation – those definitions of ‘too much’ dramatically lower than pre-tumor definitions. We can no longer multi-task. We forget names we used to know, shopping lists of 3 items, to move laundry from the washer to the dryer, what we ate for breakfast (did I remember to eat breakfast?) We are less independent that we used to be. We can’t drive. We can’t swim alone. Our friends and family are always on alert for emergency situations or they hover because of their own, understandable worry. Everything can change in a heartbeat.

Most people will make assumptions about us, if they know we have brain tumors, brain cancer, or seizure disorders. They are surprised when we tell them our chemotherapy won’t make our hair fall out and we take it via pills rather than infusions. They assume that we’re going to die, and quickly. They assume brain tumors are a death sentence because that’s how they’re portrayed in the media. They are shocked to find out that there are 120 different types of tumors and many of them are benign. They are shocked that brain tumors are indiscriminate – they can strike children, teens, adults – male and female. That there is no known cause for ANY of those tumors. That our treatment options have changed very little in the last 20 years – largely because brain tumor research is dramatically underfunded.

Even if there are no outward signs – we are fighting a battle every day. We are hoping for better treatment options and a cure. We are hoping that more people will become aware of brain tumors and help us fight. That during Brain Tumor Awareness month (May, by the way), we’ll see sports teams, products, Celebrity PSAs, fundraising campaigns showing their support with the color grey – helping to spread information and increase awareness. For us, grey (though perhaps not as sexy or eye-catching) matters just as much as pink.

Help us make a change. A donation to The National Brain Tumor Society (or your country’s brain tumor association) would be a good start.