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Archive for October, 2015

Cancer Research Funding is Scary

A ghost saying cancer research funding is scary instead of boo

 

During Joe Biden’s announcement that he would not be running for president in 2016 he stated,

“And I believe we need a moonshot in this country to cure cancer. It’s personal. But I know we can do this. The president and I have already been working hard on increasing funding for research and development — because there are so many breakthroughs just on the horizon in science and medicine.”

 

His statements and vigor about increasing cancer research funding during his last 15 months in office were great to hear. However, was this just rhetoric or, based on his past 81 months in office, are his intentions and efforts futile?

 

In 2008, The Obama-Biden Plan to Combat Cancer promised to double federal funding for cancer research focusing on the National Institutes of Health (NIH) and the National Cancer Institute (NCI). But, this has not occurred, as funding of the NCI has not shown growth since 2003.

 

In my opinion, funding for cancer research is plain scary. Five years ago, I made a post about how U.S. consumers spend more on Halloween than the NCI does on cancer research. Unfortunately, it appears that the gap is getting worse.

 

According to the National Retail Federation (NRF), Americans are expected to spend $6.9 billion on Halloween this year. In contrast, the NCI’s budget for fiscal year 2015 was just $4.95 billion.

 

It is impressive that, as consumers, we spend more on candy and costumes than the NCI does on cancer and cures. The NRF estimates that 157 million Americans will spend an average of $74.34 on Halloween this year.

 

Perhaps the power of the people’s purse is the approach that is needed to properly fund cancer research.

 

If President Obama and Vice President Biden have really tried in earnest to double cancer research funding for the NCI for almost 7 years and failed then perhaps our tax and political system have failed us as well.

 

Why don’t we try a different approach?

 

What if, as the people, we were given a $100 tax rebate if we can document a $100 donation to the NCI each year?

 

Now, that would be “an absolute national commitment to end cancer as we know it today” as Mr. Biden mentioned was needed in his announcement.

 

We the people have paid our taxes and elected our officials based on the promises to increase funding for cancer research and yet our efforts via those avenues have failed. Let us decide to fund cancer research. Let us crowdfund our tax dollars to the right place and put an end to this scariness.

 

Thanks for Reading,

 

Mike Signature

 

 

 

 

 

Advanced or Metastatic Cancer Patients Needed

Flyer for My Grateful Self Research Study

 

MyGratefulSelf is an online program designed to enhance well-being and promote positive emotion in young adults with advanced or metastatic cancer.

 

We are currently seeking volunteers between the ages of 20-39 to help test the program. 

 

The study is entirely online and can be done from anywhere – no travel is required!  For more information, head over to the study website: www.mygratefulself.org.  There, you can learn about the study in detail and fill out the interest form. 

 

You can also contact the research team directly at mygratefulself@virginia.edu

 

Caregivers Needed for Cancer Communication Research Study

Cancer caregivers needed for communication study

 

My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer. You may access the survey at the following links:

 

https://www.linkedin.com/pulse/request-assistance-cancer-caregiving-research-alexis-johnson?trk=prof-post

Or

https://ssp.qualtrics.com/SE/?SID=SV_2sFW9AGUN3Gf98V

 

To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current or former family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research.

 

Sincerely,

 

Alexis Johnson, M.A.

 

Primary Investigator                                                 Secondary Investigator

Alexis Johnson, M.A.                                                 Jody Koenig Kellas, Ph.D.

Dept. of Communication Studies                           Dept. of Communication Studies

University of Nebraska-Lincoln                              University of Nebraska-Lincoln

Phone: (708) 772-2626                                             Phone: (402) 472-2079

Email: ajohnson9e@gmail.com                              Email: jkellas2@unl.edu

 

Thank you so much for your consideration. My goal is to help people cope more effectively. I’ve dedicated my life to helping others who are going through or have had to go through this experience.

Enhancing Cancer Supportive Care Survey

Enhancing Cancer supportive Care survey

 

A group of researchers at CeRGAS, the Centre for Research on Health and Social Care Management of Bocconi University, Milan, Italy, invite you to participate in the project we have developed together with Helsinn Group: “Mhealth for improving quality of life: enhancing cancer supportive care”.

 

We would ask you for your cooperation to complete our short survey, which you can find at the following link:
https://unibocconi.qualtrics.com/SE/?SID=SV_bqDTTTSSSCQH46V

 

 

Survivor Spotlight: Dennis Kochis

A Family After Testicular Cancer Is Possible

Picture of testicular cancer survivor Dennis Kochis and his wife

 

My name is Dennis Kochis. I am 37 years old and a testicular cancer survivor. My diagnosis occurred on April 25, 2012, but to tell the true story I need to back track a little. The year 2012 was starting out amazingly. I was recently promoted, I was engaged to be married to my now wife, and my New York Giants had just beat the Patriots to win the Super Bowl. Also, I was set to head to Boston for my bachelor party with my friends, brothers and father to watch the Yankees take on the Red Sox and some good old fashion guy’s time. Sounds like a story out of a movie doesn’t it? Little did I know what was about to happen when I returned from Boston.

 

The Monday after my bachelor party I was working from home. I was sitting at my computer when I started to get a blunt pain in my left testicle. It wasn’t uncommon to be sore in that area after long drives, walking or standing a lot, and under normal circumstances I would’ve ignored it as I’d done in the past. But this time was different. Why? Well, a few weeks earlier on Easter night, I was in bed and grazed my testicle to feel a bad pain shoot through it. Like most men, I ignored it, chalked it up to playing with the kids and must’ve gotten hit there. I never considered checking myself. Testicular cancer wasn’t discussed when I was growing up. We weren’t taught in school about it and to check. I heard about it from Lance Armstrong , Tom Greene and John Kruk, but never thought it could happen to me, so to check never crossed my mind. As I sat at my computer that day, I realized this doesn’t seem like a coincidence, so looked up how to check myself. I gave myself a screening and felt what seemed like a large lump on the side of my left testicle. I already had a physical scheduled with my doctor the next day, so I figured I’d tell her and get checked there.

 

As I sat in my doctor’s office, I had all types of thoughts going through my head, always going to the worst scenario for some reason. Much to my relief, the doctor told me she didn’t think it was serious by where it was and how it felt. She thought it was a harmless fluid sack that could be drained. The doctor ordered an ultra sound and gave me an urologist to visit. I went for the very uncomfortable, cold and embarrassing ultra sound of my testicles and slept soundly that night.

 

The next morning when I woke up to go to the urologist (which I never even heard of until this btw), I received a call from my doctor saying – it’s amazing I can quote this word for word – “I got the ultra sound results and was expecting to see fluid, but didn’t. Worst case scenario, this is cancer, but it is treatable. Dr. Rosen will tell you more.” My stomach sunk, and I was never so nervous for a doctor’s appointment in my life.

 

The urologist came in, gave me a quick test (which has become a norm in my life now), sat back in his chair, and uttered those dreaded words, “This type of tumor is cancer.” Cancer. There is that word again, but now it’s reality. I didn’t even know what to say or do. I’m three weeks from my wedding and was just told I have cancer. I asked the doctor to get my fiancé in the waiting room. She came in and I cried. As he went through the next steps of what will happen, my head was spinning. I was about to lose a testicle, I may need chemo or radiation, what if it spread, what if I can’t have kids, am I going to leave my wife a widow right after we are married? It was the scariest and most emotional moment of my life. The emotions continued as I informed family and friends. As hard as it was for me knowing I had cancer, making it harder was the fear in my fiancé and families faces. I was scheduled for surgery the next day. At this point it was still unknown if the cancer spread, but all I kept thinking was I’m a guy about to lose a testicle.

 

After my surgery, I struggled mentally. The change to my body. The fear of if the cancer spread (a question that wouldn’t be answered until after my wedding). I remember the first time I felt the prosthetic in my body I had a complete meltdown and anxiety attack. But thanks to my wife, family, friends and a great set of doctors I was able to manage through this time. My wedding day came and for the first time cancer wasn’t on my mind. A week later I was back at the doctor. My marker results were in and there were no signs of cancer in my body anymore! The surgery was enough and now it was time for the monitoring phase. I started to see an oncologist whose first words to me I will never forget: “Testicular cancer, when caught early, is not something we hope we can cure, but it’s something we CAN cure.”

 

As the next year progressed, I was at the doctors constantly for check ins, catscans, and x-rays, which made it difficult for me to mentally get a grip. Each visit was lead with fear of bad news. That was until June 2013. Why? Because that’s when my wife came out of the bathroom and told me she was pregnant! The joy, relief, happiness and emotions I felt at that moment were so overwhelming. I can’t even describe it. A year removed from having my testicle removed, a year of stress both physically and mentally, lifted by the fact that I was going to be a dad!

 

Picture of Dennis Kochis son who was conceived after testicular cancer

 

Today I’m three years removed from my surgery. While I still have my moments of stress, mainly at doctor visit time, I am in a great place. I am 100% cancer free and a husband and a father. In fact, we are expecting our second child as I write this. I am thankful that I had a pain and checked myself; I caught the cancer early, and because of that, surgery was enough to rid the cancer out of my body and allow me to produce a baby naturally and have a second on the way. Every minute I look at my son, I am thankful I gave myself that test and I am thankful for the wonderful doctors and amazing people I have in my life to help me get through this. Early detection is the key. Most men don’t feel pain and testicular cancer can be an embarrassing subject to young men. But I will always make sure my son, my nephews, and my cousins all know to check themselves regularly, and if they find something, get it checked because, like me, if you find it early you can live a long “normal” life.

 

Testicular cancer survivor Dennis Kochis and his family

Life Insurance for Testicular Cancer Survivors

 

Why Cancer Survivors Should Try to Get Life Insurance

A guest post by: Brad Cummins, founder of Local Life Agents

Testicular cancer survivor asking about life insurance

 

A cancer survivor is just that: A survivor, through physical strength and personal resolve, of a vicious condition. The survivors I know have an encyclopedia-like awareness of their illness; they can cite, chapter and verse, every treatment they have undergone, every round of radiation or surgery they have received, and name every major research center or pharmaceutical company they have contacted.

 

What many survivors do not, however, know is this: Some of them can purchase life insurance. Cancer is not an actuarial scarlet letter, the sort of Big C that underwriters use as an excuse to deny all applicants coverage.

 

And, while it is true that someone who is a survivor of testicular cancer (to cite one example) often has a better chance of getting life insurance than someone with breast or brain cancer, a life insurance agent should nonetheless pursue all opportunities for each customer.

 

If this fact is news to many, and I am sure it is, please accept my apology on behalf of the insurance industry. For insurance agents need to do a better job educating the public in general and cancer survivors in particular about the options – yes: options, plural – available to men and women of different ages, incomes, interests and medical conditions.

 

Consider the alternative, which is nothing of the sort, because there already is a $15 trillion (in unmet needs) life insurance crisis in this country. That means, among U.S. households, the percentage of families with life insurance is at a 50-year low.

 

At least 70% of those households would be unable to meet everyday living expenses within a few months if a primary wage earner were to die today.

 

Bottom line: America’s families are on the brink of a massive “Quiet Depression,” where there are no conventional warning signs – there are no alerts from the S&P 500 or the NASDAQ – that a catastrophe is about to strike.

 

Analyze these numbers from the perspective of a cancer patient or a survivor, who, though he or she may not be privy to certain industry facts, recognizes the obvious: That, in the event this disease were to recur, and without any savings to offset a multitude of debts, including expenses related to out-of-pocket medical costs, credit card bills, monthly mortgage payments, student loans, and the charges (food, gas and utilities) of everyday life, a cancer survivor – a cancer survivor without life insurance – would leave his or her family without the financial means to survive.

 

I return, therefore, to my earlier point about the false belief that a cancer patient or a cancer survivor is never able to get life insurance. In fact, there are many life insurance policies for applicants with one or more of the following types of cancer: Bladder, breast, cervical, colorectal, leukemia, prostate, skin and testicular cancer.

 

Each of these conditions is serious, but none of these ailments is always an automatic rejection from a life insurance underwriter. 

 

The problem is, instead, the triumph of perception over reality. For example: Since every individual is different, and since an underwriter evaluates an application based on medical factors that relate exclusively to that specific applicant, denial of coverage – from only one life insurer – furthers the mistaken belief that a cancer survivor (any cancer survivor) is ineligible to buy life insurance.

 

Upon further review, that applicant may have a so-called captive life insurance agent, who only presents policies from a single insurer. That means an agent works for one company, thereby preventing that person from offering similar policies – perhaps even cheaper and more comprehensive types of coverage – to any and all clients, cancer survivors included.

 

In contrast, an independent life insurance agent has the freedom to shop rates from over 40 of America’s top life insurance companies.

 

An independent agent is impartial; he or she has no ulterior motive, there is no secret incentive or special commission structure, regarding what that agent shows a potential customer. 
It is the agent’s job to help a cancer survivor through the underwriting process, and to find a policy that best meets that person’s budget and financial goals. 

 

The underwriting process is, as stated previously, a case-by-case analysis not only of the type of cancer a person has, but a review of so many additional factors – such as age, gender and a person’s complete medical history – that influence whether an applicant will be approved or denied to get coverage.

 

Cancer survivors need agents who know.  

 

For any survivor who may need more information we have put together a great resource just for you. You can read in detail about what it takes to get life insurance after cancer here.

 

Guide to Life Insurance for Cancer Patients and Survivors

 

We touch on many different cancer types, underwriting guidelines, and even give possible underwriting outcome. So feel free to take a look.  

Survivor Spotlight: Nate Goodman

Cancer The Second Time Sucks More

 

Finding out you have cancer once, sucks. Finding out it decided to come back, well, that sucks even more.

 

My first go at this went like many others. I had a lumpy testicle. You can deny, for as long as I did, that you have testicular cancer but ultimately, lumpy testicle=cancer. For two years I was in denial. Didn’t do a damn thing about it. All you ever heard was Lance Armstrong’s situation and mine was NOTHING like that. Had it grown to the size of a grape fruit, I’d like to think I would have gone to the doctor. But no, mine never increased in size. Just a lumpy shape shifting testicle.

 

I ended up getting that taken care of, AKA, I have one less testicle. I didn’t have good insurance at the time and that is where this story really begins and if you think you might have an issue or just went through all this without insurance, like I did, this is when you need to pay attention.

 

24 years old, with less then impressive insurance and just had my testicle removed. Needless to say, it cost me a few bucks. As I am typing this, it reminds me to write the check for a CT scan that happen 6 years ago.

 

I went into debt because of cancer, like many do. I’m a big fan of Dave Ramsey. Not only for his knowledge of personal finance but for his faith he isn’t afraid to share. If you have ever listen to him, “debt is dumb and cash is king”, is a saying you have heard a time or two. This first battle with cancer only put me in debt around $20,000. This is a minimal sum of money for this disease, I know, but for a 24 year old, it is the majority of your annual income. I was lucky enough to have my Urologist be a family friend and everything he did was for free. Surgery included. After surgery, I had one CT scan a week later and everything came back fine.

 

One year later and now having awesome insurance, I had a follow up CT scan, due to pressure from my then girlfriend, now wife, to check things out. I did it and it came back all clear. My thought process, I had a lumpy ball for two years, nothing happened, I checked it a year later after surgery, I’m good forever. That’s where follow ups stopped.

 

Boy I was wrong.

 

February 13, 2015

 

It is absolutely amazing how things can change over night. One of my best friends, a guy I’ve known for 20+ years was in town and hung out the night before and I felt fine. Friday morning, I woke up pretty early with some dull back pain but thought nothing of it. The morning progressed and the pain kept getting worse and worse. The back pain reminded me of the back pain I had due to the cancer the first time. The pain kept getting worse and worse, all the way to the point that I had to call my wife and tell her to come pick me up and take me to the hospital.

 

Now let me take a break and give my wife the credit she deserves. My wife, when she was just the girlfriend, was only 21 years old and a junior in college when I first had to go through this. If you are battling this and you have a wife, girlfriend, partner, whatever, holding your hand through this, you are a lucky man. This is equally difficult, if not more, on them.

 

Back to the story

 

My wife swoops me up but before she got there, I took the time to WebMD myself and I figured I had a kidney stone. Obviously, the Internet told me so. That kidney stone hurt like hell and caused me to hunch over in the car the entire ride to the hospital. Luckily, my wife works for a hospital and made some calls on the way there and I was able to go in the back door and not have to wait in the ER line. At this point, I was in the most pain I had ever been in, in my entire life. Apparently lying down on the cold hospital floor is frowned upon and gross, I didn’t care, I went full fetal position.

 

They get me in an ER room and then they drugged me. That was great. What wasn’t great is the fact that they thought it was a kidney stone too and I didn’t need to pee. One test for kidney stones is checking for blood in your pee. Well, if you don’t have to pee, then they have to got get it, via catheter. WOW, that is not enjoyable, especially when they don’t find blood in your pee. CT scan time.

 

Post CT scan

 

Hanging out in the room, somewhat drugged up, with the wife and in walks the ER doc. She walked in, closed the door and instantly you can tell she is not looking forward to the news she has to share with us. “There is a sizable mass in your abdomen, pressing on your kidney. Presumably, cancerous.”

 

Without hesitation, I grabbed my wife, Sara’s, hand.

 

Sara instantly jumps into “for better or for worse, in sickness and in health” mode and asks, “What do we need to do next?” Clearly upset but being the tough as nails woman she is, she powered though it. I’m just sitting there thinking, well, this is going to be expensive. That sizeable mass was the size of a football. How a football grows inside me without me knowing, I have no idea, but there it was. Pressing on a kidney and making it bleed. AWESOME.

 

This is why I wanted you to pay attention, if you weren’t before, and you think you might be in my situation. I was ignorant enough to think that after a year, I was scott free, and didn’t have to worry about cancer anymore. Had I continued my check ups like I was suppose to, this would have been caught well before it got the size it did.

 

The first battle with cancer, no chemo was involved. Just the snip snip.

 

The second battle I spend 11 days in the hospital and received the first round of chemo there too.

Picture or testicular cancer survivor Nate Goodman in the hospital

 

CHEMO ……. SUCKS

 

If you thought chemo might not be that bad, you are in for a rude awakening. Testicular cancer is super treatable by chemo. But, in order to do so, they literally kick your ass with it.

 

Wanna feel like you are having the life sucked out of you? Get hooked up to chemo for 5 days in a row. Two bags of chemo, two bags of hydration, 4-5 hours total and a tube hanging out of your chest for those five days too. I forgot to mention, you get a port in your chest. It makes it easier for them to “plug you into chemo” as it’s just under the skin on your chest. Yes, you can tell its there but you get used to it.

 

I had friend ask me, “ Is chemo like being really hung-over?” No. If you have to experience chemo, it will be like nothing you have ever felt before and not in a good way. I have never experienced anything like it. The actual infusions aren’t that bad. Sure you can taste it in your mouth and you get kind of sleepy, but the five days aren’t the worst part. It’s the days after chemo that tend to be less fun. It’s progressive too. You feel shitty after the first round but you bounce back in two days. The next round, it takes maybe 3 or 4 days to recoup. The following round it takes, 5 to 6 days. My last week was the worst. I went into the hospital weighing 190 pounds the biggest I had ever been in my life. As my brother in law would say, “I was swoll!” Thank God I had that weight to loose. I had always been right around 150-160 pounds post college. Coming to Texas, I put on some weight but mainly muscle, a lot of muscle. I did not weight myself that last recovery week of chemo, that was the last thing on my mind, but I guarantee, I was in that 150-155 ballpark, if not less. I threw up for a week straight and ate nothing for 5 days. Popsicles. Saved my life. You can keep those down. Remember that.

 

Your hair falls out too.

Nate Goodman receiving chemotherapy for testicular cancer

 

I loved my hair. I had great hair. I cared for it. I styled it daily.

 

It’s a sad day when you notice it coming out in the shower. It comes to the point that it’s annoying to have any hair left because everything you rest your head on, tugs at the hair and ultimately pulls it out. Pillows, hats, blankets, and don’t you dare run your fingers through your hair. Just shave it off. It eventually falls out everywhere. And by everywhere, I mean everywhere. Your face is going to swell up too so be ready for being hairless and fat faced.

 

The worst part of chemo… My vote goes to the sweating

 

Chemo is essentially a poison. The tumor doesn’t like it but neither does the rest of your body. If you think about it, God went all out when he made the human body. It’s nuts. Your body is going to do its damnedest to push that poison every chance it gets. It is going to come out in your urine and it is going to come out of your pores. Both of which smell horrible but for some reason, my wife couldn’t smell it. The sweats were sooo bad that my nurse in the hospital had to change my sheets nightly because they were soaked from it. Even when I was home, for the five days of chemo, all out patient, I slept on the living room floor so we didn’t have to change the sheets every night. Do you like long showers? I hope you do, they are one of the few things that are actually relaxing. Lay down in the bathtub and let the water just wash over you and the piece of plastic covering the tube in your chest. It makes you feel better. Kinda normal.

 

The last week of April, I had my last infusion. Thank God that was over and I started to lead a normal life again. We use to live in Indianapolis, for about 4 years. When I went into the hospital and told everyone where we were from they kept asking, did you get treated at IU health, in Indy, the first time. I did not and I am not joking, every doctor asked that. Doctor Lawrence Einhorn, works for IU Health, treated Lance Armstrong, and truly wrote the book on how to treat testicular cancer. Sara use to work for IU before we moved to Texas. Sara, being the amazing wife she is, made an appointment with him, to get a second opinion. Again, you are going to get mad at whoever is lucky enough to take care of you through this, there is no question about it, it will happen. But in the end, you realize that they only want the absolute best for you and they want to do everything in their power, to keep you around. And that’s what Sara did. She made the appointment, booked the flight, rented the car and told me we were going to Indy whether I wanted to or not. She loves me and wanted me to see the best.

 

Dr. Einhorn was great. My Doc here is great too but his specialty isn’t testicular cancer. There are about 8000 case of testicular cancer in the U.S. every year. There are equally the same number of Urologists in the U.S. This means, each doctor sees about one testicular cancer patient a year. When you toss in it reoccurring, like mine did and the size of the tumor, even less have dealt with it. Lets face it, testicular cancer is a cancer that doesn’t get talked about. It doesn’t take that many lives and it’s really treatable out of all the cancers. But is it still CANCER! We went to Einhorn and he basically told us we were on the right track. He went into more detail with my doctor in Texas and was able to explain things to but both Sara and myself at ease.

Nate and Sara a month after chemotherapy for testicular cancer

 

The tumor is no longer the size of a football but more like a baseball. It is continuing to shrink and as long as that happens, I won’t need any other treatment. If it does start to grow, I will start chemo again.

 

I apologize if I scare anyone with the whole chemo talk. It does suck a lot but it does work. You’ll be ok.

 

If you take anything from this, do your follow ups. No matter what the cost is. This could have been caught a long time ago had I been doing my follow up.

 

Lastly, I just had my 3-year wedding anniversary with my wife Sara. She has now had to deal with me and cancer twice and she is only 27. I cannot stress how important, loving, strong, caring and helpful she was throughout all of this. She sat there for every minute of every infusion I had. She stayed all 11 nights with me in the hospital. She drove me to every doctor’s appointment. She changed the sheets in the middle of the night after I cover them in sweat. She stayed with me as I was throwing up everything in my stomach. She took care of our home, did all the laundry, all while putting in 50 hours of work a week. I can’t ask for a better wife. I love you Sara and I thank God you are in my life every day.

 

To those of you battling this, God bless and remember to always smile and laugh, you only have one ball now.

Nate and Sara Goodman after treatments for testicular cancer

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