Thank you Mr. President

There are many things which lots of people can life or dislike about this President but there is one thing which I think it is hard to dispute the improvements the Affordable Care Act has on the live of cancer survivors and all other citizens of this country. While I do try to keep separated the cancer fighting aspect of my life and my political views I was reminded about the significance the Affordable Care Act.

Thanks to President Obama and the Affordable Care Act, I now no longer have to live my life in fear of being denied healthcare coverage because I had cancer (a pre-existing condition) or that I have reached a lifetime cap on medical payouts because I underwent 4 months of chemo, 30 odd days in the hospital, PET scans, intrathecals, a dozen blood transfusions, fligrastim injections (Neupogen, brand name) used to stimulate the production of white blood cells which are decimated by the chemo, and countless other drugs, simply to keep me alive.

I wanted to say Thank you President Obama. Thank you for taking action and instituting badly needed healthcare reform.  The United States of America, no longer allows insurance companies to deny coverage to individuals if they have bee sick before or cap their lifetime benefits.

 

(Read more about other aspects of the Affordable Care Act here: http://www.healthcare.gov/?gclid=CJDEm6KEvK4CFSEQNAodjzwHFA)

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Financial Toxicity

Great article talking about the troubles and issues cancer patients face, not all medical problems.  The article talks about the increased rates of bankruptcy for cancer survivors and highlights the importance of good health insurance BEFORE one is diagnosed. http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1792 

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Check out some friends of mine

Check out my story and lots of other young survivors at http://www.stupidcancerfaces.com/

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Staying Positive – the little things

Staying positive is key during treatment, and its the little things that help keep you sane through the pain.  My dad and I had a little fun with my chemo drugs one day…

 

If only it was really whiskey would have been more fun - the nurses did love it though

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Guest Post: How Cancer Networks Help Patients Gain Knowledge

How Cancer Networks Help Patients Gain Knowledge

 

Doctors take great care of their patients. However, the knowledge they give cancer patients may not always answer all of the questions that cancer patients may have. The technical terms reinforce doctors’ authority and expertise in their field, but they are not always personally beneficial to cancer patients.

Moreover, the more intense or rare the cancer is, the more questions the cancer patient may have. Therefore, patients with mesothelioma may have more questions than patients with other less severe cancer have. Luckily, there is one type of group in particular that can provide extra knowledge to cancer patients: Cancer survivor networks.

Here are just a few ways that cancer networks can help patients gain knowledge about their condition.

Experience

The primary way that new cancer patients receive information is through other patients who are farther along in their journey to recovery. Because cancer groups are full of patients in different stages, it provides brand new patients with a plethora of knowledge and first-hand experience.

Patients in remission often still attend cancer groups to help other patients learn what it is truly like to go through treatment and therapy.

Group talk

Most cancer networks have a session for patients to talk about their condition. Though most people think that it is during this time that patients relieve themselves of fear and anxiety, it is actually a time for much learning. While it is true that many patients express their fears, other patients chime in with advice to help the anxious patients combat their fears. In this respect, many doctors confess that they believe that cancer networks are also therapeutic for patients.

Family members and friends can join

Cancer networks are not exclusive to patients. Virtually anyone can attend these sessions, and many people with loved ones who have cancer attend these groups to get a first-hand look at the lives that many cancer patients have. It is hard for healthy people to directly relate to cancer patients, but with the help of cancer networks, they can have a greater perspective on the situation.

Conclusion

No doctor would keep his or her patients away from a cancer group. However, you may have to ask your doctor to recommend you to a group. If you have cancer, you should consider joining a group near you. The knowledge you receive from these groups is beneficial and can greatly aid the information you receive from your doctor. This article also lists the importance of cancer groups.

 

David Haas
Mesothelioma Cancer Alliance Guest Blogger -
http://www.mesothelioma.com/blog/
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Guest Posts

So first time for everything  I was contacted by a fellow cancer advocate and he asked if guest posts were available here. I hadn’t had the question asked before and so I feel like I should outline what the policy is moving forward. Individuals looking to submit their own content here are more than welcome to email me and ask! So long as the post fits with the general themes of this site I am more than happy to post your content here.

Thanks!

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Why I will never be anything but a Patriots Fan.

Living in southern CT where Red Sox and Yankee fans live next to each other, and Patriots and Jets/Giants fans encounter each  other daily there are few ways to avoid the rivalry.  From a young age I remember my uncle saying something along the lines of “You can be any baseball fan you’d like, just you can’t be a Yankees fan.” There was never any real question of where my loyalties would lie but that sentiment pretty well encapsulates where my sports allegiances stem from. So while my Patriots allegiance was never in jeopardy this post describes why there is absolutely no chance I will ever root a team over the Patriots.

Sometime during treatment my Uncle Ed, huge sports fan, mentioned he’d read an article a few months prior that one of the former Patriots, Joe Andruzzi, member of ’01, ’03 and ’04 Super Bowl Teams, had lymphoma maybe even the same kind.  A few Google searches later I found the best Sports Illustrated article ever! Joe Andruzzi, was diagnosed in 2007 with Burkitt’s Non-Hodgkin’s Lymphoma. Same type as mine, though different location, his was abdomen rather than neck in my case.

Now I am not even coming close to doing the article justice I can’t hope to sum up the enormous complexity of the emotions conveyed in the article about a young boy who passed away years before Andruzzi was diagnosed, his brother’s involvement in 9/11 as FDNY who were in the Towers, you should defiantly read the full article. But some key points I wanted to highlight relative to the experience of Burkitt’s:

“Ultimately he was determined to have Burkitt’s Lymphoma, a form of non-Hodgkin’s lymphoma that advances with such haste that it can double in size in just 24 hours.

“There was much work left for Joe. It is the paradox of Burkitt’s Lymphoma that while it is ruthlessly aggressive, it also responds well to equally aggressive chemotherapy. That phrase — “aggressive chemotherapy’‘ — is so antiseptic as to be misleading. Joe Andruzzi tosses off admissions of pain like manhole covers, yet he says, “It was real tough.’”

“He spent nearly the entire summer as an inpatient at Brigham and Women’s Hospital in Boston. The chemo took his hair, his weight (he lost more than 40 pounds) and his energy. He was known as one of the toughest people in the Patriots’ locker room, making the NFL as an undrafted free agent from Division II Southern Connecticut State and enduring multiple surgeries in addition to the relentless physical work performed by offensive linemen. Yet now he says, “I went to 10 training camps in the NFL. I’d rather go to any training camp than what I went through last summer.” -  Tim Layden, SI.com 1/31/2008

 

Andruzzi’s story meant a lot to me. Reading it during treatment to see that someone as strong as him felt beat down made me feel a lot better about barely moving from my couch. Though I’d be surprised if he played as much as xbox as I did that summer…

Reading how his cancer had presented in his abdomen was another key kernel of knowledge for me, it once again reinforced how lucky I was that my tumor was on my neck. A place that visually showed far before any physical symptoms occurred, with a tumor the size of a golf ball on my neck and otherwise asymptomatic and already stage II I can’t even imagine when I would have been diagnosed if the cancer had presented in my abdomen or some other location and then how much worse my survival changes would have been or how much harder/longer treatment would have been…

So in 2009 when I rode my first Pan Mass Challenge and I learned Joe Andruzzi was to be riding and at the Opening Ceremonies in Sturbridge I was understandably excited. Listening to him speak was pretty awesome and echoed a lot of what the SI article talked about. When the ceremony was finishing up I wandered to the front of the seating area in hopes of maybe talking to Andruzzi. I was able to get his attention (I think my Dad my have been the one who made initial contact but that’s not the point).  I told him I also had Burkitt’s and we ended up talking for 5-10 minutes about treatment and swapping stories. the coolest part was when some other fans came up and asked for his autograph, he was very gracious and gave it to them, but still maintained eye contact with me and kept engaging about our shared cancer. It was the first time that I can vividly remember the power of cancer connections being so instantly connecting complete strangers.

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3 years post treatment check up- All’s good

Went into Yale’s new awesome Smilow Cancer Center today for my 3rd year post treatment check up. Got a clean bill of health from  my doc which is pretty sweet.  A lot has happened in the last 3 years far too much to go into now (maybe another time). Just wanted to say thank you to everyone who has supported me through treatment and beyond. Couldn’t have done it without you and I appreciate it all. – Thank You.

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Half Full Tri Recap

So my 2011 racing season is complete. I wrapped up the season with a 70mile triathlon, The Half Full Tri, put on by The Ulman Fund for Young Adults. 70 miles to represent the 70,000 young adults diagnosed with cancer every year. This is the second year of the Half Full Tri and my second year competing. You can see my results here.

This year was amazing. The organization of the event is truly impressive last year I was very impressed with the organization of the event for it’s first year and this year they continued to impress me with the improvement that were made. (They altered the run course to loop through the spectator area so the spectators could see the athletes at mile 7 as well as the finish.) This year my race plan was simply “to finish” since unforatunatly with job search transitions I haven’t had the opportunity to set a training schedule.  I for the last 4 out of 6 weeks I’ve been recovering from injury (6 stitches in the bottom of my foot from an oyster shell). So the plan was to simply finish but this race was certainly an adventure.

The swim kicked off at 7:20am on Sunday when the air temp was a sweltering 41 degrees. Though the water was 65 degrees, if memory serves, it was still quite a breath stealing first 200 yards. Nothing compared to the fabled CUSDF FL Training Trip of 2010 when iguanas were falling out of trees it was so cold but still not my usual start to the day.

The swim went pretty well. Was the 2nd into the water and 1st in class out of the water. I got caught by a swimmer in another class with about 20 yards left to go. Despite zig zaging more than an antelope evading a lion I somehow managed to not see the guy coming up on me. By the time I saw him he was at my waist and I didn’t have enough distance to kick up the speed and fight it out.

The transition and the bike started off great. Though by mile 8 of the 54 I had to stop and put my arm warmers on. I’d stashed them in my uni and threw on my shell. The shell wasn’t as windproof as I thought it was so I definitely needed to put on the arm warmers despite having a jacket already one.  The weather was overcast so there wasn’t the nice solar heat that I had last year. The battle for who controlled my body with 54 degrees of overcast damp air last the whole ride. By the end I’d managed to avoid my legs cramping or locking up due to the cold. Even with the constant motion of the pedal strokes my knees and legs felt like rocks getting off the bike.

In transition I could feel my feet were pretty cold since I wore my tri bike shoes which vent awesomely well (great on hot days, not so great on cold ones).  I didn’t realize until I started to run the extent to which my feet were actually cold. It felt like I was running with blocks for feet for the first 3 miles or so.

The run went better than expected. At mile 7 one of the survivors I was talking with at the start, Matt, caught up with me and we ran together for most of the rest of the race. I apologize the run didn’t generate many stories worth telling.

Though there was one point where the course ran through paved path through a densely wooded park with plenty of underbrush. About 70 yards before the course was about to open up to the road I heard a woman scream around a bend but then nothing more. I wasn’t concerned since there wasn’t more cried of agaony or anything, figured she probably saw someone she wasn’t expecting on the course or her teammates she was running with did something to elicit the scream.  Only 30 seconds after I learned why she screamed.  As I came around a bend in the path I saw some movement in the underbrush on the right side of the trail and then again on the left side, half a second later I saw that it was two kids in gillie suits! (For those of you who didn’t spend their childhood watching discovery and history channels, a gillie suit is the outfit worn by snipers when they are in the field on a mission and need to blend in to be nothing more than maybe a shadow.)  I didn’t end up screaming like the woman ahead of me had but I certainly did jump more into the middle of the trail to get away from the person on the left side of the trail haha. Not sure if it was their slow movement that didn’t get me or if it was the fact the 13 year olds didn’t really feel like jumping out in front of a guy my size with a serious look on his face? The world may never know…

 

I crossed the finish line and all of the cold which I’d been ignoring for the last 70 miles hit me like a sack of bricks. I grabbed the foil at the finish line put on my finisher medal and made my way to the massage tent while stressing to my dad the importance of going to the car and getting everything warm that I had in there. After the massage and warm clothes we headed out, back to my aunt and uncles for a few more hours before the drive back to CT.  Def doing the race again next year and hopefully with this job I’ll have more time to train early in the season and also avoid those vengeful creatures known as oysters…

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My CT Challenge Video interview!

 

Thanks to the CT Challenge for doing a great job with the video my interview this summer!

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