David Beach's Blog

Weekly Update

Perhaps I'll try a weekly update on the ins and outs of what's going on with me? That's what this is anyway.

I've been trying super hard to be positive. I was reading Rick Steve's Europe Through The Reach Around book (I think that's what it's called... either way it's good.) And he says something about how to approach travel.

"Be fanatically positive and militantly optimistic. If something's not to your liking, change your liking."

There's something about that I like. It's the determination in it that resonates with me. I'm not normally a overtly possitive person. The designer or product manager in me is always looking for problems. What isn't working. Things that could be better. Things to fix. It's easy for me to apply that to a product or service or thing I'm working on, it's not quite so easy to turn that focus on me. But if that's what I have to do, then that's what I'll do. 

This week, I've been hit hard with insomnia. I don't want to take a pill for it, just because I'm trying to reduce pills, but I may have to do something. If someone told me that they were experiencing insomnia, this is what I'd say to them. Go to bed without distractions. Breathe. And when you wake up write in a journal about all the stuff that's swirling in your head. Hand write it. Two or three pages. Just dump that crap out. And keep doing it. But have I done this? No... not yet. Let's see where I am next week. I'll let you know.

On Monday I'm gettting a little surgery. It's outpatient. They are going to put in a thing called a "port". It goes in my chest and connects to a big vein. This will make it easier for them to give me blood tests and infusions. My veins have always been difficult to find, but the chemo and all the poking doesn't help. This thing should. It's a simple surgery, but I'll be under for a little while. In and out. 

Then next Friday is my second infusion. That's the half way point. 

I should say that besides the lack of sleep, I'm feeling pretty normal, I had minimal queasiness and nothing ever came up. I was expecting the worst, but it was really mild compared to what I was told would happen. The drugs I'm getting are much stronger than last time, but so far so good. I still have my hair as well. No signs yet of it coming loose. A little ringing in the ears, but that's gone now. So this round wasn't too bad. However, if I remember correctly, it gets worse after each infusion. It builds up. I'll just be mindful of how I'm feeling.

I've been coughing a bit more the past two days. Just lots of clear stuff. But that may have nothing to do with this. Just part of my normal seasonal respitory and sinus issues. I'll speak to the doc about it when I see him next. 

Speaking of Rick Steves. I am looking at planning a trip to Europe or somewhere with the family for sometime this summer. I'm going to be "militanly optimistic" about that.

Remission

When I was first diagnosed with Lung Cancer, I never said that I had "Lung Cancer". I kept saying that I had a tumor in my lung. And it was cancerous. I had a hard time saying that I actually had Lung Cancer. I had a tumor in my lung. That's how I broke the news to people. I think it made me less scared. And perhaps I thought that it sounded less scary to other people. 

But the fact of the matter is that right now I am in remission for Lung Cancer. Remission. I'm not cured. It can come back. The reality of the situation is that I have a 40% to 50% chance of surviving beyond 4 years. It may be better than that. I like to think so and my doctor says it probably is considering my age... but for the next 4 years, you'll forgive me if I'm a bit jumpy. 

I just made my appointments for my 6 month check. I'll have another full-body CT Scan and blood work done at the end of May. Then I see my Oncologist in early June. I'm sure I'll be fine. Yes I still cough like crazy, and my back hurts, and I have cancer fatigue, and brain fog, and all of that, but I chalk that up to recovering from everything I went through the past year. Not anything new to worry about. At least that's how I stay half sane.

I haven't written about this stuff in a long time. There's a lot to say actually, if I want to be totally honest. But I don't think it's the right time. Basically I've changed, I'm a different person. I don't know if the old me will ever come back and I'm still trying to figure out who the new me is. 

Video About Lung Cancer

Here's a nice piece done by the Bay Area's ABC affiliate about Lung Cancer. I encourage you to watch.

November is Lung Cancer Awareness Month

Break out your dingy gray ribbons because November is Lung Cancer Awareness Month!

Hooray!

No, you will not see a Lung Cancer Awareness iPod or cute lung cancer apparel, or little lung cancer teddy bears. There will be no product tie-ins here. No NFL games supporting lung cancer, none of that. Not that I'd want it. The exploitation of a disease to sell product, or boost brand, or for any other financial gain just doesn't feel right. But what do I know?

• Approximately 219,000 people are diagnosed with lung cancer in the U.S. each year – over 103,000 women and nearly 116,000 men.

• Lung cancer kills more than 160,000 people annually – more people than breast, colon and prostate cancers combined.

• Lung cancer is responsible for more than 28% of all cancer-related deaths every year.

• Smoking is the primary cause of lung cancer. Approximately 87 percent of lung cancer cases occur in people who are currently smoking or have previously smoked.

• Although the risk of developing lung cancer goes down with smoking cessation, a significant risk remains for 20 years or longer after quitting.

• Approximately 50 percent of all lung cancers (106,500) occur in people who have already quit smoking.

• Radon exposure is the second leading cause of lung cancer, and the leading cause of lung cancer among never-smokers.

• More people who have never smoked die from lung cancer than do people from AIDS or liver cancer or ovarian cancer.

• Risk factors for lung cancer other than those from smoking include lung scarring from tuberculosis, and occupational or environmental exposures to radon, second-hand smoke, radiation, asbestos, air pollution, arsenic and some organic chemicals.

• Only 16 percent of lung cancer patients are diagnosed before their disease has spread to other parts of their bodies, (e.g., regional lymph nodes and beyond), compared to more than 50 percent of breast cancer patients, and 90 percent of prostate cancer patients.

• Roughly 84 percent of people diagnosed with lung cancer die within five years of their diagnosis, compared to 11 percent of breast cancer and less than 1 percent of prostate cancer patients.

• Less money is spent on lung cancer research than on research on other cancers. In 2007, the National Cancer Institute estimated it spent only it spent only $1,415 per lung cancer death compared to $13,991 per breast cancer death, $10,945 per prostate cancer death, and $4,952 per colorectal cancer.

I don't know what the numbers are for people who have never smoked, never been around radon, never been around asbestos, or never been around much smoke. Like myself. More research needs to be done.

Visit the National Lung Cancer Partnership for more information.

Going Through Chemo

This is my story about what it was like to go through Chemotherapy...

Do the Chemo Stomp! on 12seconds.tv

I found out a few weeks after the surgery to remove the upper right lobe of my lung that Chemotherapy was recommended. I had a Stage 1b malignant tumor in my lung. Lung Cancer. It is not known how I got it. I don't know if I'm predisposed to cancer or what other factors I was exposed to that would have encouraged this growth.

After the surgery, the surgeon, as excellent as he is, did not think that I would need to have any other treatment, and seemed surprised when I told him that I was going to see an Oncologist the next day. In some aspects, he was correct. The surgery was successful in removing the tumor and the tests on my lymph nodes determined that the cancer had not yet spread. However there was one thing that was troubling. The tumor breached the pleural space between my lung and chest wall. It was a pretty aggressive tumor. I'm lucky they caught it when they did. 

It happened pretty fast at the Oncologist. He took me through my diagnosis and went online to show me what the most recent research said about my condition. It was very simple. I had 65% to 75% 5 year survival rate and a 2002 study showed that patients who were in the same situation as me and had adjunctive chemotherapy increased survival by 3% to 5%. However as the study continued, it looked as though there was no statistically significant gain in survival. It came down to a choice. Do I go through chemo for a possible 5% bump or not. My doctor put it plainly... "If it does come back and you know that you could have possibly done something to prevent it, how would you feel?" If it does come back, that's it, I'm more than likely a goner. It was a no brainer. Do the chemo.

I set up an appointment to with the infusion nurses to go over the procedure and side effects. They pretty much tell you every bad thing that can happen. Nausea, infection, shock, fever, fatigue, severe fatigue, etc. They tell you when to call the nurses and when to go to the emergency room. The main concern is fever. Anything over 101 is cause for alarm and probably warrants a trip to the ER. They also tell you to bring books, magazines, DVDs, your laptop, and any other diversion because you could be sitting there for a while.

I was to have four infusions over 12 weeks.  One every three weeks. I guess I was lucky because often times people get a lot more. They said I could have a treatment on a Thursday and be back to work the following Monday. Apparently people have no trouble with this. I was not so lucky. I tried this for a while, but the physical and emotional drain was overwhelming. I could get around between sessions and do most things, but it took twice as long and I needed lots of breaks. Work though, was pretty difficult. I'm not saying that a person going through chemo can't work, I did some things, but for me, I was at nowhere near the performance level I was used to. Granted I had slowed down the past year, probably due to the cancer, but I'm used to shouldering a lot. When I did go to work, I shuffled from meeting to meeting and stared off into space. After the second infusion I broke down a few times and just sobbed at my desk. I had no control over my emotions. But I didn't care, it felt good. My boss was more than understanding and let me take the time I needed. I'm still very grateful.

The worst part was the bone pain. I was given a shot the day after my infusion to boost the production of white blood cells and fight off infection. I think the stuff is called Neulasta. (Gee that sounds good! It's new and it will help me last!). This shit wreaked havoc on my bones. It felt like they were breaking from the inside. Like the worst growing pains. The pain lasted 3 days and even with Vicodin and Oxycontin I was super sore. I guess it doesn't affect everyone like this, but apparently it was better than getting an infection.

My hair started falling out after about 2 weeks. I would pull on it and strands would just fall out in my fingers. It was amazing. I first gave myself a mohawk and then when it looked like there was no turning back, I shaved my head. I recommend shaving your head before your hair falls out on its own. It lets you have some control.

My chemo sessions lasted 6 to 8 hours. I was given a bag of Benadryl then Carboplatin and Paclitaxel. It's a fairly simple and benign process. First you check in and are taken to an infusion room. For me this room was a pleasant, open space with about 8 to 10 leather reclining chairs lined up. Some people were already there by the time I showed up at 10AM. You sit down and the infusion nurse greets you and goes about trying to find a vein. After the second session and with all the blood tests I was getting this was a tricky prospect. I was poked 8 times on my third round because no veins were showing themselves. I imagine that they were needle shy. Once they get a good one, they set it up just like an IV. A bag of whatever it is they are putting inside you is hooked up to a pole with wheels. There is a tube that goes from the bag to a timed regulator. This controls the speed of the drip. Then there's another tube that goes from the regulator to the vein in your arm. After you're all hooked up, you just sit. And sit. You don't feel anything except maybe a bit of a burn from the Benadryl, but that doesn't last. Sometimes blood comes back through the IV and sometimes they have to wash it out with some saline. After all the hours and all the drips, they unhook you, tape you up, slap your bottom, and send you home.

You really don't feel anything right away. The next day is when I got that Neulasta shot, but nothing happens until the day after. This is when the bone pain starts. This is when you don't feel good. I got a sore throat, low fever, and nausea. But for me, the bone pain was the worst.

Then you just feel like you're living at high altitude. You are out of breath and totally fatigued. I remember trying to walk around and having to stop every 5 minutes. I remember losing my balance and falling over then using a cane for a few days. I remember trying to go to my kids' baseball and softball games. I remember looking like a freak. But most of all, I don't remember as much as I should. That's the troubling thing...

I wrote this in my journal while going through the process...

Infusion
They put bags of poison
in my veins
sat in a leather chair
stuck with needles
hard to find a vein
Infused with a syrup
that kills my cells
It makes me feel like
i'm living on a mountain
at 15,000 feet
hard to breathe
what the fuck is going on?
then my hair comes out in my
hand. then i'm bald
and sick.
It hurts so much to cough.
to breathe.
getting out of bed is hard.
But I try to be normal.
And live my life.
Because I feel it,
but I don't.
It's okay,
But it's not
Not until later do you realize
how rough it's been.
My brain has changed

Kizza me
I want to feel...

Let's kill him
so he can live
I've been resurrected!
Chemo is Jesus juice.
Thank you friends!

My next post will be about what has happened to me after Chemo.

Here are some links for reference. These are the sites my Oncologist used:

1. http://www.chemoregimen.com/
   
2. http://www.nccn.org/index.asp

The Color of Cancer

October is Breast Cancer Awareness Month. This month you will see pink ribbons and pink promotions all over the place. Pink products, pink merchandising, and pink web sites. Yahoo has a ribbon and a cute, little bird animation next to the logo. At least they did. It's gone now. I absolutely think this is a good thing. At least the intention is good. My grandmother died of breast cancer and like you, I've known many other women who have passed because of it. I know others who are fighting it bravely right now. They will beat it, I know it. But something about all the pinkness seems off to me. I want people to be aware of breast cancer, but sometimes it feels like companies use the disease and the awareness campaign because it's fashionable or marketable and not because they really care about the cause. Yes they donate money and provide information, but they have to. They couldn't get away with it otherwise. I've been on the creative side of the marketing world for over 15 years and I've seen it. Branding or exposure or greed is the first motivation, the cause comes in second.

Pink has a lot to do with it. Pink is a very marketable color. People like pink. Pink sells. Pink is also a feminine color and breast cancer is a feminine cancer. Except that men can get breast cancer too. It's true, but I'll let that slide.

Who chooses these colors? Red is the color of blood, so let's make that the AIDS ribbon color. Ladies get breast cancer, so naturally it must be pink (I know lots of women who hate pink). Prostate cancer is blue for boys, and guess what the color is for bladder cancer... you got it... Yellow! I don't think the person in charge of these ribbon colors is very imaginative. Perhaps they are even a tad inconsiderate. At least the color for colon cancer isn't brown.

November is Lung Cancer Awareness Month. Quick! What is the color for lung cancer? Tick tick tick tick ding! If you guessed gray... then you would be half right. The official color for lung cancer awareness is "pearl". Is pearl even a color? It's sort of a wispy blend of white... wait! Kind of like SMOKE! They did it! They linked the awareness color for the most deadly cancer in the world to what everybody thinks causes that cancer. Yaaaaay! Fuck you person who thought of this. How about green for fresh air or light blue which represents, oh I don't know... FRESH AIR? Hell, the color of healthy lungs is pink... so why not pink?? Fuck you and your inconsiderate color bias.

Come this November, you will not see lung cancer iPods, or gift items, or pearl ribbons on Yahoo or Football games dedicated to the victims and survivors, or hardly anything like that. People with lung cancer deserve what they get. They did something, it's their fault, right? They brought it on themselves. Apparently my crime was breathing. The stigma of lung cancer needs to be eliminated. It doesn't matter how you get it, it's an awful, awful thing have. Most of the time, when you're told you have it, you're guaranteed to die within months. So don't think about it as a smoker's problem. It is not. It is not. It's deeper than that... Because of this stigma, lung cancer research funding is much much lower than other cancers. Because of this stigma, early detection in non smokers is very rare. Because of this stigma the stupid color for the stupid ribbon is not really a color at all.

The Bonnie J. Addario Lung Cancer Foundation does a good thing. They use green and pink and totally ignore the "official" color. I like that. I think they get it. I support them and so should you. I find it interesting that most of the lung cancer or lung disease organizations reject the pearl thing. Even the American Lung Association uses red and blue. 

No matter what, if you can, please support breast cancer awareness this month. Even if it means wearing pink things. We need to look beyond the marketing to what the cause is really about... stopping a terrible and deadly disease that affects people we love dearly.

The New Normal

I went in for my 3 month oncology check up today. I had blood work done two days ago and this was the first visit with my doctor since I had a CT scan after chemo 3 months ago. I hope this makes sense. I'm seeing my oncologist every 3 months and this was the first of those visits. Everything is good. Some aspects of my blood are goofy but this is because I've had chemo. Some cells take longer to regenerate.

This is the first time that I've felt a little safe since the surgery. It's a new page. I can maybe start thinking ahead. I have a future.

My doctor (Dr. Wu) is awesome. We talk about gadgets and the web and the Yahoo! / Microsoft search deal and iPhone apps before we talk about cancer. I told him about the post chemo side effects I've been experiencing. Chemo Brain and the like. The side effects include:

• Numb feet (especially toes)
• Numbness and pain in my fingertips
• Difficulty focusing
• Inability to multi-task
• Memory loss
• Difficulty writing and spelling
• Difficulty speaking
• A general brain fogginess
• Confusion
• Frustration
• Depression
• Anxiety

He said that what I'm experiencing is common. There hasn't been a lot of research about life after chemotherapy. Everyone has been focused on killing cancer cells and there hasn't been as much attention on what survivors experience. Now that there are more cancer survivors it's becoming a little more clear what chemotherapy does. Basically more people are saying the same thing so doctors are starting to take notice on a collective level. I'm feel okay about living with these side effects. It's not known how long they'll last, but I'm willing to live with them. Dr. Wu said I have a "new normal".

The new normal. Basically life is not the same. I've had cancer, I'm missing a lung, and I've had chemotherapy. My life is not like it was a year ago. That "normal" no longer exists. My new normal includes this trauma. Now what do I do about it? Dr. Wu said it is like a person who has had a leg amputation. The person can either stay in a wheel chair or can get up and learn to use a prosthesis. The latter is much more difficult and can be painful, but a transformation happens. The person has learned to live as best they can given the circumstances.

I'm not totally certain yet, but I think my new normal means that I take things a little slower. I do less. I simplify. I think it also gives me a clear opportunity to shift my focus to my health and well-being. I look inward more. I don't take on too much. I breathe.

My new normal is to breathe. Deep breaths. Because I can. My new normal is to live the best I can given the circumstances.

Lung Cancer Mortality Reduction Act

When I read that lung cancer kills more each year than breast, prostate, colon, kidney, melanoma, and liver cancers combined, my stomach flipped. I mean I think I knew this, but when I read it this time, it really hit home...

This is a press release from the Lung Cancer Alliance (LCA) about an important bill "to establish the first ever mult-agency, comprehensive program targeted at lung cancer." Please read and do what you can to support it.

Thank you.

SENATOR BEN NELSON (D-NE) JOINS AS CO-SPONSOR OF LUNG CANCER MORTALITY REDUCTION ACT

Visit by Lung Cancer Alliance Advocate, Kevin Atkinson, Spurs Action

Washington, DC (August 14, 2009) - Today, Lung Cancer Alliance (LCA) hailed the support of Senator Ben Nelson (D-NE) who has signed on as a cosponsor of a bill to establish the first ever multi-agency, comprehensive program targeted at lung cancer.

Entitled Lung Cancer Mortality Reduction Act of 2009, S.332 authorizes a five year program to reduce the mortality rate of lung cancer which continues to be the number one cancer killer.

Lung cancer causes more deaths each year than breast, prostate, colon, kidney, melanoma and liver cancers combined.

“We must elevate lung cancer to a national public health priority because hundreds of thousands of families are—and will continue to be—hurt by this disease,” Senator Nelson said. “We need to commit every available tool and avenue of research to reduce lung cancer mortality as quickly as possible and that is what the Lung Cancer Mortality Reduction Act is posed to do.”

In thanking Senator Nelson for his support, LCA President & CEO Laurie Fenton Ambrose, said, “Senator Nelson’s co-sponsorship of this landmark legislation is very significant. His willingness to join other colleagues and demand that lung cancer no longer be ignored and that it be addressed with greater compassion, increased resources and a comprehensive plan – is what will ultimately end lung cancer as we know it.”

The bill requires the Secretaries of Health and Human Services, Defense and Veterans Affairs to combine forces on a comprehensive, coordinated plan of action with funding authorized for five years to accomplish the mortality reduction goal.

LCA advocate Kevin Atkinson, was inspired to come to Washington, DC and advocate for more lung cancer research after his brother, John, a never smoker, passed away from the disease this June. “My brother’s goal was to raise awareness and research funding for lung cancer. I came to DC to make my brother proud and to carry out his mission.” Kevin is also the Executive Director of the John Atkinson Lung Cancer Foundation which will provide scholarships to children who have lost a parent to lung cancer.

The National Cancer Institute (NCI) is required to review its funding priorities in order to meet the lung cancer mortality reduction goal and more national institutes are called on directly to take part, including the National Institute of Heart, Lung and Blood, the National Institute of Biomedical Imaging and Bioengineering and the National Institute for Environmental Health

To insure accountability, the bill requires an annual report to Congress and creates an oversight board composed of the three Cabinet Secretaries and representatives from the fields of lung cancer treatment, research and advocacy.

In addition, the bill directs the Secretaries of Department of Defense (DOD) and Veterans’ Affairs (VA) to implement an early detection and disease management program for military personnel who are at high risk for lung cancer because of smoking or exposure to carcinogens during active duty.

The bill also:
--Authorizes the Food and Drug Administration (FDA) to create a new Lung Cancer Mortality Reduction drug program with incentives for new treatments, targeted therapies, vaccines and chemoprevention drugs for precancerous conditions.
--Requires the Centers for Disease Control and Prevention to carry out an early disease research program targeted at the high incidence and mortality rates among minority and low-income populations.

The bill includes specific authorizations of $75,000,000 for certain NIH agencies in FY10 and authorizes such additional sums as may be necessary for all the cited agencies to accomplish the goal for FY 2010 through FY2014.

Cancer Fighting Eating

I promise that I'll write about Web stuff and social media again... soon. But I need to get this cancer info out there as I continue to learn more about the disease. And specifically the one that clobbered me...

Non-Small Cell Lung Cancer -Adenocarcinoma. Stage 1b with a breech or spread of the pleura.

I've learned that it can take years even decades for the initial affected cell to do its thing and mutate to become a tumor. This information is interesting because it could help pinpoint how I may have gotten lung cancer as a non-smoker.

Cells becomes tumors through several steps. The first step is "Initiation" which is the disturbance that affected and modified the cells to begin with. This could be chemicals, radiation, virus... and in my case, probably second hand smoke. The next steps are "Promotion" and "Progression". This process can take up to 40 years. During this time it's not yet cancer. The bunch of modified cells begin to band together to maybe start to do something dastardly upon an organ. These are not detectable. Lung cancer is one of those that may stick around in the progression stage for decades. After progression, detectable cancer appears in the form of a primary tumor(s). Then there's metastasis. That's when it spreads to other organs in the form of secondary tumors. There's nothing after that. Nothing.

Here's the scary thing for you... You may have modified cells in the promotion and progression stages working away in one of your organs right now. Again these are not detectable. But it's very possible.

So what do you do?

A major thing is to eat foods that fight cancer. Change your diet. There are several studies that say a proper diet can keep the already existing modified cells at bay so that they never form a tumor.

Here are the books that I've found that are really cool and do a great job explaining how and why certain foods reduce the formation of cancer.

Foods to Fight Cancer by Richard Beliveau, PhD. and Denis Gingrass, PhD.
Great illustrations and photography in this too. The first chapters are about "knowing your enemy" so it goes into some nice biological detail about what cancer is and how it works. Basically start eating lots of fruits and vegetables and you might want to take an Indian cooking class. Tumeric... it's all about tumeric! :)

What to Eat if You Have Cancer by Maureen Keane and Daniella Chase
I just got this one, but it seems to have a great reputation. It's mostly about eating during the disease, but it's good advice no matter what. Plus it has recipes.

Anticancer - by David Servan-Schreiber
I mentioned this one before, but I thought I'd bring it up again. He really goes into the science of the diet and how it fights and prevents cancer. It's told as a personal story so it's not to nerdy. I haven't finished this one either, but trust me, it's good.

Just after my surgery, I had to stop reading about cancer. I couldn't pick up anything non-fiction in fact without getting depressed, so I started reading all fiction to help escape. I've read some awesome stuff during this time. A bunch by Sherman Alexie, Neil Gaiman, Terry Pratchett (Good Omens), The Princess Bride, and lately the Octavian Nothing books by M.T. Anderson. Oh and my favorite of the bunch has been Sweetness at the Bottom of the Pie by Alan Bradely... So if you get tired or overwhelmed by cancer books, I don't blame you. Pick up something fun to read. Then go eat anticancer foods!

Cancerless

I had a CT scan on Tuesday. It wasn't pleasant. In fact it was one of the most uncomfortable experiences that I've had since all this started. Okay it's nothing compared to lung surgery, but it wasn't fun. It's the barium... this thick acidic liquid that you have to drink, drink, drink, and drink some more. It does a number on your innards. Plus there's the IV and pants removal. 

I suppose it was worth it though. This test told my Oncologist who then told me that there was no sign of cancer. My organs are normal. No tumors, all clear. Cancerless.

Obviously this is good news. I don't need another test for 6 months and I can start to plan ahead a little bit. Now I continue to heal from the chemotherapy and the surgery, start back to work on Monday, and start living a little.

I have 5 years to go, but this is the best way to begin.