Anger, and a Request

Just a quick note from the East Coast on yet another beautiful Spring day (they say the rains will stop by the 40th day; if you have an Ark I am interested in making a reservation).

Like Andy, I too am blessed with a great brother, friends and family. And they have been doing a great job checking in with me on how my parents and I are handling this. Everyone asks "What Can I Do?"

Some have asked "Are you Angry?" This is understandable - Andy's a young, great guy with a beautiful family, good job, great heart and strong mind - no one 'deserves' to have cancer, and it seems even more 'unfair' and even unbelievable that a healthy, young, non-smoker would be diagnosed with Lung Cancer. Am I Angry? Sure, I, my parents, and our friends, I am sure, go through periods of anger at this situation.

The reality is It's Not Fair - but I remind myself to vent as I need to, to step back from that precipice, to let the anger and pity go, because, really, neither one will help - and focus my energies on doing all that I can for Andy and the countless others out there in the same boat.

For those of you who really know me, you know that when I need to fight back I research and get the facts. And the more I learn, the more I Am Angry.

Everyone has heard about the impact of Breast and Prostate cancers to women and men; each is the #1 cancer killer in their respective gender. Lung Cancer is genderless - it kills more than breast, prostate, colon, liver, melanoma and kidney cancer combined. Yet Lung Cancer receives the lowest amount of federal cancer research funding. Full details about Lung Cancer and the lack of appropriate federal research funding can be found here on the Lung Cancer Alliance website.

There are theories as to why this is. Lung Cancer is political - for two reasons. I, like most, until recently assumed incorrectly that Lung Cancer just struck smokers; while cancer of any type is a tragedy, there is an unspoken prejudice that since someone chooses to smoke, it could have been prevented. While a majority of Lung Cancer patients have smoked, the number of new patients is trending towards non-smokers: since 2008, 60% of newly diagnosed Lung Cancer patients are non-smokers.

The other 'hidden' reason is something else that I had assumed until recently as well. Anyone remember the movie "The Insider" about the tobacco industry researcher that went on the 60 Minutes television program? That 1994 interview led to the landmark agreement between 46 states and Big Tobacco (the "November 1998 Master Settlement Agreement"). The 46 states, plus US territories, are to be allocated over $200 Billion (that's right, Billion with a 'B') over a 25 year period. Per the agreement, the money is to go towards treating health issues associated with tobacco.

Since the agreement was at the state level, there is no federal oversight into how the states use the money. So guess what? As there is no policing of the use of the funds the estimate is that less than 1% of the funds allocated through 2009 is being used to fund research into early detection methods and new treatments.

Is anyone else angry when they read that?

Washington finally woke up to this disparity between Lung Cancer and federal research in 2009, and submitted the Lung Cancer Mortality Reduction Act of 2009.

Malcolm X wrote "Usually when people are sad, they don't do anything. They just cry over their condition. But when they get angry, they bring about a change."

So here's my challenge to you. Here's what you can do to help. Get Angry. Reach out to your Senators and Representatives and ask them to Support the Lung Cancer Mortality Reduction Act. Fill out this form. The form will generate a letter to your political leaders and email it to their Washington offices.

Alright! I'll get off my soapbox now. Turns out that this is not a quick note. But it is important, and I thank you for reading it, and acting on it.

Tim

Coming around

Well I was anticipating that I would have a tougher time recovering from this round of chemo and radiation, and boy was I right. The side effects of radiation really took their toll on me and continue to do so. My throat is extremely sore all the time. It's starting to get better now. I've had trouble eating due to this, and my weight is down to my high school weight. As my throat has improved I've been able to eat more and hope that I can get my weight up over the next week. My blood work showed that I have a low platelet count and white blood cell count, so I have to be careful to not get sick. The other side effect of the radiation is that I've been coughing up phlegm nearly non-stop. I look at that as my body getting rid of cancer cells, and that helps me get through it. My back pain is constant, but the vicodin helps with that. It's now muscular, not from the bones, so hopefully as I get more active and move around more it may subside.

Enough of the bad stuff. My mom's visit was good, we watched a bunch of movies (thanks Liz) and spent time playing with Nicholas. Dad comes out next week, right before the next round of chemo. Tim has been in touch with Dana Farber and has made some progress in getting me in with a team there. This is good news as they have some of the best cancer doctors in the world.

That's it for now. Thanks for all your support.

Rough Days Behind, Better Days Ahead

Hello folks. Just a quick note to let you know how Andy is doing following the completion of radiation (yahoo!) and his second chemo injection... not good right now but like the weather earlier this week on the east coast, improving.

Andy received his tenth and last directed radiation treatment for the sites on his back, ribs, and neck on Wednesday AM then proceeded to get green-dyed chemotherapy. A little bit shorter this time as he did not receive the bone strengthening medication (which is prescribed on a 6 week cycle) and less of the second line drug. And, true to form, he requested that it be dyed green in honor of St Patty's day.

Wednesday night and Thursday were fairly rough, as expected. Andy was pretty sick both days, exhausted and in a bit of pain due to the radiation. He slept a little bit better last night, and is hoping to eat today.

On a lighter note, Andy's Brother-in-Law in South Africa saw the 'Bald Andy' photo and created this cartoon:

Happy weekend all!

Tim

Big week

It's a big week for me. I had radiation today, again tomorrow, and finally Wednesday. Right after radiation on Wednesday I go straight to chemo. The radiation has put me out a bit lately. I'm tired, my taste buds are messed up, and some back pain has come up (should all get better in a week or so). I meet with both my radiation oncologist and my regular oncologist on Wednesday. After that I should have some solid re-coup time. Looking forward to Thursday, no matter how rough I'll be feeling.

Mom comes in tonight. Jen's going to get her soon. I'm looking forward to seeing her. I'm sure it'll be emotional. She's here for almost two weeks. It'll be fun for Nicholas. I was telling Jen today that in a strange way cancer has made me more a part of the family. I've been able to spend a lot of time with Jen and Nicholas and we've grown tighter. I cherish the moments now and have a new outlook on life.

Some friends came by this Sunday to visit. It was good to see them. We had quite a spread to eat. I showed off my baldness in all it's glory. I guess I have a decent shape to my head.

I felt crappy this morning but the afternoon's been good. I went for a walk with Nicholas for about 35 minutes. I'm going to try to get exercise when I can. Still have a lot of work to do with finances and taxes. Everything takes a lot longer for me these days.

That's it for now. I'll try to update this weekend to let everyone know how Wednesday went.

Bald is beautiful

Well, I knew it would happen eventually. My hair has started falling out. I looked at my hand after running it through and there it was. Now I can start dressing like The Edge and wearing beanies all the time. Been looking forward to it!


Another day in the radiation tube today. My back is feeling better all the time and sleep is getting easier. All good things heading into round two of chemo next week. My Dad just left for the airport to head back to Boston. Mom comes out next week. I think next week will be tough after round two and I know my Mom will probably see me at my worst so far. She's tough. She can handle it.

So the beat goes on, I've made strides in getting my life together this past week and preparing for what's to come. There's a good chance we'll make that move to Boston this summer so I can be treated at Dana Farber and live with my parents. There's a lot to figure out with all that coming and we've been working it out. Priority one is to get healthy, after that jobs and health insurance stuff will fall into place.

I'm open to calls and visits, just let me know when if you want to come up and we'll make it work. I'm feeling better now so I have more energy than the past few weeks. I have to say thanks again for all the support from everyone, whether they are local or across the globe, the outpouring of support is overwhelming. I love you all!

-Andy

1st radiation a success!

I had a successful first radiation yesterday and it worked for my pain already! I slept in my own bed for a full night for the first time in months. I didn't have to sleep on a chair at all. It was heaven! My back is feeling much better. I go in today again for the second of ten treatments. This is a turning point for Team Andy!

I also learned yesterday that whatever lesions were in my right leg are gone. The chemo must have taken care of them and as a result I don't have to do as much radiation.

I'm very excited today!

Pain relief in sight!

Hello everyone, it's Andy. First I want to say thanks for all the amazing support you have all shown over the course of the past few weeks as I've started down this journey. I haven't been able to answer all messages and emails but just so you know it has given me great comfort to hear from so many of you and each email and message lifts my spirits.

Today I went in for my radiology fitting. Basically the technicians fit you with a special body pillow that keeps you motionless for the radiation. Usually it takes five days from the fitting to your first radiation treatment, but the doctor called tonight and wants to start with me tomorrow! This is great news because the radiation should alleviate much of the pain I've been dealing with in my back. I have been unable to really sleep because of the pain and it is fairly constant so relief will be a huge step for me. I'm set up for 15 appointments, once daily until the regimen is complete. I should finish shortly after my next chemo injection so hopefully my body will be in full fight mode for that round!