On the News

Today I was interviewed by a local TV station about our Concert for the Cure. I was calmer than I thought I would be, which is probably a good thing. I was wearing my “Hug Like David” t-shirt, and I could almost hear him saying, “It’s only awkward if you make it awkward.” While I’m not sure that is true in all situations, it worked for me today.

We are slowly gaining momentum on the concert, and as usual, I’m behind on a lot of things… Including updating you all on the Race for Hope and the Head to the Hill events that took place over the last few days. I will write about that when I can share some pics. Both went really well and made me excited for next year!

Remember to keep wearing your grey this month and send me a pic!

UPDATE: I have heard from a few people that the link to sign the stamp petition doesn’t work. I tested it, and I believe that if you have signed it in the past, it won’t work. If you haven’t signed it, it should. Also, if you have signed it, you should be able to successfully click on the link to share it with others. If someone finds that to be incorrect, will you please let me know? Thanks!

 

Snowballs in May!

Not sure if you’ve seen the weather, but Kansas had snow on May 2nd. SNOW! In MAY! That’s a little crazy, but it is a good representation of how different THIS May is going to be.

There has been a lot going on for brain cancer advocacy, and it is only the 3rd day of the month! I’m so excited to see the real differences we are making! All day yesterday, I was getting updates on stuff, and I felt like my list from yesterday was inadequate by the end of the day so I made a new list.

Let me remind you that this is just a small sampling of what is going on out there. We are trying to post stuff on the Operation: ABC “Annihilate Brain Cancer” page, but please forgive us if we miss something. Likewise, if you know of something we can help promote, please let us know.

Here’s my updated list of things you can do no matter where you are:

1. Wear Grey. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it! #GreyAllMay

2. You can donate via IndieGoGo to make sure the concert is a big success:

http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

3. You buy something in the Origami Owl fundraiser that is going on throughout the month of May:
Origami Owl designer, Karletta Pergeson, has offered to donate 10% of your purchases made between now and May 30th to “Concert For The Cure”. Origami Owl is a unique line of lockets. Every Living Locket™ is custom designed with charms that tell the story of your life and represent the things you love. They even have a grey brain cancer awareness ribbon!

Please place your orders online at http://www.momoftwo.origamiowl.com. There you will find everything you need to design yourself a beautiful locket! The website is set up in an “a la carte” style, where you choose which locket you would like, then pick the chain, charms and plate you want for the inside. And if you choose, you can have dangles to hang outside the locket. Upon check out please select “Concert For The Cure” so that your purchase will be counted.

4. Take a trip! Eaglewings Travels will donate 10% of any bookings in May to Concert for the Cure! You don’t have to travel in May – just book the trip before the end of the month!

How awesome is that? Take a wonderful vacation and know that you are helping others at the same time!
To book, you can email Colleen Atherton, Owner at catherton@cruiseholidays.com or call her at
316-214-5426 http://www.eaglewingstravels.com

5. Change your Facebook profile pic. If you haven’t seen an image you like, you can find a few here:

http://campaign.customink.com/grayinmay

6. Go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

7. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

8. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

9. Send a Tweet. Novocure will donate $5 to the Chris Elliott Fund (a charity that helps patients and families with GBM diagnosis and supports brain cancer research) when one of their tweets are retweeted – using the hashtag #TuneIn2GBM Look for them on Twitter, @EndBrainCancer ! Follow them, then retweet our messages that uses the hashtag #TuneIn2GBM.

To retweet: put your mouse over the message. A small menu pops up at the bottom. Click the one that says RETWEET. This will copy our message to all of the people who follow you. Then follow up with that tweet by posting a message to your followers, asking them to retweet the message you just sent.

10. When you do any of the things on this list, you can use #GreyAllMay on Twitter to let people see your activity for brain cancer advocacy.

We’ve made the snowball, now let’s push it down the hill!

Five Things You Can Do To Save Lives

Since Alexander Moore already took the best blog title (see his post here:https://alexandamymoore.wordpress.com/2013/05/01/may-day-may-day/#comment-808), I’m going to go with the tried and true list. You see, today is May 1st. The first day of what the U.S. calls Brain Cancer Awareness Month. For many of us, it is every month because we have seen first hand the damage this particular cancer can do.

I’ve talked about this before, but here’s a little recap if you are new. Brain cancer does not discriminate. It can happen to anyone at any time. They don’t know what causes it. You can live a healthy lifestyle or be a complete degenerate.

I have a few theories on why you don’t hear about brain cancer much. Bear with me on this for a minute because I believe it is part of the reason why brain cancer doesn’t get as much attention as some of the other cancers.

When a person is diagnosed with brain cancer, it is frequently in a stage that requires immediate attention. There are not clear winners on what treatment to choose, so that means you have to research for yourself what course of action to take. Unfortunately, a lot of the reasons you would be diagnosed with brain cancer are also things that can impact your ability to reason through these situations. Fatigue, extreme headaches, and confusion are a common part of the symptom package sometimes rendering the patient a less than active participation in the search for treatment options. Add to that that the patient may be too old or too young to use today’s research tools effectively, and you can begin to see a problem.

It doesn’t stop there, though. Let’s say you are patient who doesn’t have debilitating symptoms (like my son was) and you are of an age to both understand some of the research and use the research tools (like some of my friends are). Good for you! But now, you have to decide if you want the world to know that you have a disease that could impact your cognitive skills. How will your employer react? Your friends? If you have a “good” prognosis, you may decide to tell as few people as possible so you can get back to “normal” as soon as possible. I can’t say that I would do it any differently, but it is one less voice in the fight. No, it’s more than that. Because if that person doesn’t speak out against brain cancer, then there is a large possibility that their friends and family won’t either.

But let’s go back to those too young or too old patients. Why don’t those families speak out? Well, a few of them do. A quick search will find stories of brave little tykes running touch downs or visiting Disneyland. But for every story you see like that, there are more who are too sick to do that. Or who don’t want those precious few days they’ve been given to be taken away by the media and strangers. Or who are just simply too overwhelmed with treatments and symptoms to find a way to reach out.

And those older patients? I think more and more of those families ARE speaking out thanks to social media. But the mainstream media doesn’t care that your 75 year old dad is dying. That is an “acceptable” age to die. Nevermind that people in your family live into their 90′s and your dad was out playing golf the day before he was diagnosed. I know this sounds a little cynical, but I really believe that is the case. I give a lot of credit to the TRBC “sisters” (find them here:https://www.facebook.com/pages/TRBC-for-TRBC/179797368810544) who united via Facebook because they had each lost their dad to brain cancer.

We are finding our voices, but we need your help. It’s not even hard! Here are 5 EASY things you can do to raise awareness for brain cancer research:

1. If you are on Facebook, go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

2. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

3. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

4. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it!

5. Attend an event or sponsor one online. I happen to know that even $5 would mean the world to the people who are organizing an event or running a race. For $5, you can tell them that what they are doing matters. Of course, you can tell them with more money, too, but you get the idea.

You can even sponsor our Concert for the Cure online:

http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

I’m gonna go make a donation to a friend’s team right now. Why don’t you join me?

 

Addition: The lovely Amy Moore reminded me that you can also show your support by changing your Facebook profile and/or your cover photo to show your support. If you don’t already have one, there are some great images here: https://www.facebook.com/media/set/?set=a.457134687694742.1073741826.109926575748890&type=1

Are You Taking Extra Precautions?

Our neighborhood has been having some break-ins lately. So a lot of us have been taking extra precautions. We’ve been beefing up security at the perceived threat to our homes. And it got me to thinking, why don’t we treat cancer the same way? It is lurking out there, ready to attack, frequently without cause, always without warning. What are we doing to protect ourselves against this monster that will attack half of us over the course of our lifetimes? Half of us will get cancer before we die. Isn’t that enough to make you want to get out there and fight? Or is it that you think most cancers are “treatable”? I’ve seen those treatments first hand, and believe me, you don’t want to go through that. And let’s say the treatment is successful. Yea! But do you know that a cancer survivor is much more likely to have cancer again? Not to mention the other life-changing side effects from the cancer and it’s treatment.

This is a lifelong diagnosis – if you are lucky enough to live past your initial bout with the disease. We can’t just sit idly by and let this disease keep stealing lives!

If I seem a little “fired up” today, it is because I am. I just read about two little boys this week who are both going on hospice care. Their parents are trying to make decisions like, “If he stops breathing, do we revive him?” I can’t even type that without crying. How old are your kids? Can you imagine having to make that kind of decision at any age? Or what if it was your sister or your dad? Your best friend?

I focus a lot on brain cancer because 1) it killed my son and 2) it does not discriminate. It can strike any of us out of the blue. We don’t know what causes it and there are few (if any) effective treatments. Are you scared yet? I am! But I’m also more determined than ever to find a cure. I don’t want to read one more heart-breaking account of a family burying their loved one from cancer.

Please do something to join this fight. There are fundraisers all the time in neighborhoods all across America. Go to one of them. If you don’t have any money, volunteer. Write letters and call your Congressmen. Take food to families who are waiting by their sick loved one’s bedside. Do SOMETHING! Imagine what change we could make if we all did something. We can beat this disease if we work together. I know we can!

As always, we have info posted on the Operation: ABC “Annihilate Brain Cancer” page about events around the US. The Spotless Mind kids have a big event in April in VA (and need volunteers!) and we are having a concert in Wichita in May (and need sponsors, attendees, and volunteers). I’d love to hear what you are doing to fight!

Thoughts on Fairness

Reblogged from The New Normal:

I'm up in Seattle for the weekend. Sadly though it's for a memorial service for someone who was one of my best friends in high school and college. It feels unjust, unfair, and just plain wrong to be up here for that reason. My friend would be turning 33 today and it was a tragic unfolding that lead to his death and I'd rather not go into the details for the sake of protecting him and his family.

Read more… 999 more words

I've tried hard not to say "this isn't fair". Not because I don't think it all the time, but because it would become my mantra if I let it and that doesn't seem very productive. Alexander Moore has some thoughts worth sharing on the subject, so I thought I'd share his post here for you guys to read.

#greyallmay

It is Random Acts of Kindness week, which is the kind of thing that keeps my kids at the forefront of my mind. All of them have a deep appreciation for the truly random, and they have made me have an appreciation for it as well. As cool as random surprises can be, they don’t usually have an impact that lasts beyond the moment or the day. Making a big impact takes planning… which got me thinking.

May is Brain Cancer Awareness Month, and we have been pretty vocal about that in year’s past. There hasn’t been much of an impact, though, despite our efforts. I think a big part of that is the lack of a large, concentrated effort. We are all out there doing our own little things, but without an umbrella covering it all and pulling us all closer together. I’d like to change that this year.

Before I tell you how I think we can change it, let me explain why I think it is important to change it:

1. Brain cancer patients frequently can’t advocate for themselves. Why? Well, first of all, the disease is attacking their brains. That means that communication skills can be affected, but beyond just speaking, it can make them more irritated with social situations. Too much stimulation (in the form of conversation or even background noise) can be overwhelming and frustrating. Secondly, if they are not affected by these issues, they don’t want people to assume that they are… so they may try to hide the fact that they are fighting the disease. Some people, like my son, for example, spend much of their time with few visible symptoms and in the fortunate cases, even few non-visible symptoms. They can go on with their lives… but that doesn’t mean the disease isn’t there. It doesn’t mean that their lifespans aren’t being exponentially shortened. This is an insidious disease, and it  may lurk or leave without signs that a casual observer could ascertain. The disease may be defeated, or it may take their life, frequently without friends knowing that they were “that sick”.

2. As clever as it is to use grey as the awareness color for a disease affecting our “grey matter”, the color grey is as “blah” as you can get. Think about it. If an NFL team decides to wear pink for breast cancer awareness, they have immediately gotten everyone’s attention. Pink is bright. It is unusual for a man to wear. But grey? Everyone wears grey. It’s the “new black”. It’s plain, and dare I say it, a little boring. If we got every major league baseball team to wear grey in May, you may not even notice. Half of them already have grey uniforms! It’s not outstanding in any way.

3. There is no marketing firm working on brain cancer awareness month. Breast cancer has some pretty heavy hitters who are willing to spend large portions of their budget on marketing and public relations to influence companies to help them make an impact. Brain cancer charities spend their budgets on research. Frankly, I’m pretty happy that they do, but if we want their money going to research, we need to help them out with the marketing.

So here’s what I propose:

1. I think we should ALL use #greyallmay for all of the events that we do. Whatever brain cancer organization you are raising money for, tag #greyallmay. We can build some sort of basic webpage to rally everyone and explain why this is an issue. We can list links to the various organizations that are making a difference in brain cancer research. We can post pictures of people going “greyallmay” to build the hype.
2. The rally cry should be for everyone to wear grey every day in May. Is that a commitment? You bet it is. But I figure if Johnny Cash can wear black every day of his life, we can all commit to one month a year.

Who’s Grief Is Worst?

I have a very compassionate friend who lost a daughter at a young age. He has a family at his church that is struggling with the death of their daughter who was a young adult. He wants so badly to help them with their grief and he reached out to me to see if things are somehow different when you lose an older child. He is trying so hard to put himself in their shoes so he can try to help them through this. I was so touched by his thoughtfulness, and I thought long and hard about how to answer him. Below is my response:

“I can’t really say if it is different to lose a child at a younger or older age… my educated guess is that it doesn’t matter to the person grieving. It makes me very sad when I think of David’s dreams and what he wanted to accomplish. He had so much to offer the world and brought such joy to others. Sometimes I think it is particularly hard to have lost him on the cusp of adulthood, but I have family who have lost babies and adult children, and I think it is just plain horrible no matter what.

I don’t feel particularly qualified to offer advice, but since you asked, I’ll tell you what I’ve done to try to cope with every parent’s worst nightmare.

1. I gave myself permission to be mad at God sometimes. I know He is wiser than me, and that He will see me through every situation. But I’m still His kid, and kids can be mad at their parents sometimes. It’s ok. But I still have to maintain a relationship with him no matter what.

2. I gave myself permission to be snarky sometimes. I try to keep it “private”, but I vent to 2-3 moms that who’s children have died or who were particularly close to David. They don’t hold it against me when I say stuff that I only mean for the moment.

3. I don’t even try to ask “why”. It’s futile. There is no answer that could ever be good enough, and it would just drive me crazy if I tried to figure it out. There is no reason. Sometimes life just sucks. But David never let the sucky things get him down, so I’m doing my best to live by his example.

4. I give myself permission to grieve – but I set time limits. Sometimes it’s an hour, sometimes it’s a day. Whatever the time period, it’s ok to cry, be mad, be sad… just let those feelings take over. And then put them aside. If I take a day to be sad, the next day I must go out into the real world and act like a normal person. I know that I’m a person missing a chunk of myself, but the world doesn’t need to know that. “Fake it ’til you make it” is a popular expression for a reason.

5. I try to do something daily that makes a difference to other people. I do advocacy work. I mail birthday cards to friends who would never expect to get one from me. I send care packages to David’s friends who are freshmen in college this year. Those little things help me feel a little better about the world.

I have a friend who participates in a “Grieving Mothers” group on Facebook. I’m part of the group, but I don’t feel it really helps me much. It’s like watching a sad movie. Life is sad enough. I don’t need to look for ways to be more sad. I actively seek out ways to be happier. I know David would have wanted that, and I really feel bad about myself when I don’t try to honor his memory. Most days, just thinking about the gift of life I have been given is enough to make me at least somewhat productive.

It’s hard to figure out what to do to make things seem “normal” again when the fact is, it will never be normal again. But no one’s world should revolve around a single person. And there is almost always someone else who really needs you to get through the grief. “

I know there  are a few people who read the blog that have lost loved ones. If you have any coping techniques to share, I’m sure it would be helpful to everyone.

Busy

Busy means a lot of different things to different people. Lately, “busy” for me means being fairly constantly active with work and home projects. Depending on the day, I will gravitate toward thinking or non-thinking projects, but there are so many things to do it hardly seems to matter what I pick.

Through all the activity, I miss my kids. David’s birthday came and went and we all survived it. Austin wrote about it quite eloquently on Facebook. Kinsley honored his memory by preparing and ultimately delivering gifts to the pediatric unit at our local hospital. I ordered some “birthday cookies” and we shared them with the Spotless Mind kids. Nothing major, but I think he would have approved of it all.

On top of getting our home and company back on track, we are undertaking a fairly large project. We are going to have a concert in May to raise money for brain cancer research. David died in May, so it has special significance for us. The really special thing about it is that a lot of our friends from the Apple community are also planning to have concerts. I’ll post more details as we get them, but I am so honored that David has inspired so many people to become active for brain cancer research.

 

Share this:

Blogging is an interesting thing. You feel like you need to do it regularly… even when you don’t really have much to say. This blog has a “theme” so I feel like my posts need to be mostly about brain cancer and my struggle with grief over David’s untimely death. Kind of dark and depressing stuff, which I don’t really like to focus on a lot. So today, I’m going to try to update without being too dark and depressing… wish me luck.

We’re coming up fast on David’s birthday. It’s next week, and I find that this week has me far more sensitive than normal. To be expected, I guess, but I don’t like the mood swings. Still, it hasn’t seemed to effect those around me overmuch, so I guess I’m dealing ok. It does make me all the more sensitive to how much time has passed since he died, and I’m not altogether pleased with what I’ve accomplished since then.

I did have a very pleasant lunch today with Richard, Jacob (a co-worker), and Kim (Jacob’s long-time friend) to discuss some fundraising plans for May. Jacob was introducing us to Kim, and she was a delightful person to get to know. She is going to help make some introductions around town, and I’m excited to meet some other people locally who want to fight this cancer beast.

We also have a meeting scheduled next week with a local tv station to talk about advertising for work and hopefully convince them to get involved in our May campaign. It’s a station with a big heart, so I think it will go well.

We are also putting together tentative plans for a larger involvement in the brain cancer research world. That has been slow going because of how busy we’ve been at work, but with the new year comes renewed vigor toward that goal.

Speaking of the new year, I don’t normally make resolutions, but I decided to this year. I sort of started last year, but I thought I would make it more formal this year… so here it is:

1. I will do something EVERY DAY to forward the cause of brain cancer awareness and research. This may be something simple like wearing an awareness shirt or bracelet, or something bigger like attending (or running) an event or contacting my congressional representatives.

2. I will continue reaching out to David’s friends who are starting their own independent paths in this world. David was always a supportive friend, and he had talked to me briefly about his desire to make sure his friends were always supported. I started this at the beginning of the school year (most of them are in college, but a few have chosen other paths). It has been very rewarding to be able to continue to be a part of their lives, and I hope that they will benefit from the relationship as well.

That’s it. Just two. There are certainly a lot of other things I need to do to make myself a better person, but I am starting with these two things. I’d be interested in hearing what your goals are for the new year if you feel like sharing.

Child-like enthusiasm

I always told my kids that I would love them no matter what, but I really hoped that they would also turn out to be people I could like. When you really like someone, it is usually because they have personality traits that you enjoy. David had that in spades. He was always fun to be around, and I guess I never spent a lot of time analyzing why.

One of the reasons why, sort of snuck up on me this week. I’m traveling for work with a colleague, Jacob. We’ve definitely spent some “quality time” together this week, and last night at dinner I had an “ah ha” moment. Jacob has this wonderful, youthful enthusiasm and appreciation that is fun to be around. He was expressing his appreciation of the restaurant and its owner, and the way he did it reminded me so strongly of David that I had to stop for a moment.

It was a simple thing that had happened. We were the last customers at this locally owned pizza shop, Nick & Willy’s, and the owner stopped cleaning to thank us. We talked for a minute, told him we liked his place and his food, and left. People have encounters like that every day. But I was impressed with the owner, and so was Jacob. But Jacob expressed it in such a way that it made the whole experience more fun. David did that. He took ordinary things and made them extraordinary. Better yet, he took ordinary people and made them feel like rock stars. That is a really special gift.

As you go through your day today, try to find something you can enthusiastically appreciate. And show it. You’ll make someone’s day.