My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Wednesday, May 28, 2008

Where The End of Cancer Begins: Stand Up to Cancer

I have mentioned Dr. Wahl, the cancer research scientist I met in San Diego who so inspired me as to the importance of funding for cancer research. At the time I met him, he was speaking to a group of us involved in the Scientist-Survivor Program. Towards the end of our discussion, he told us to watch the date Sept. 5th, that something new and important would happen regarding cancer research funding. Though we asked, he would not tell us what it was, just told us to "watch the date".

It's officially now been announced on TV and the web site is up and running. Stand Up To Cancer. On September 5th all three major television networks will join hands and work together to donate an hour of commercial-free television time to education and fundraising devoted to a cancer cure. The special will feature live performances by recording artists, television and film stars. There will be interviews with patients and scientists, information about cancer screening and information about potential ground-breaking discoveries in cancer research.



The web site (http://www.standup2cancer.org )is wonderful and loaded with information on this new initiative which I will do my best to make people aware of. Cancer affects all of us. One in every two men and one in every three women will one day have a cancer diagnosis...unless cancer is beaten.

With so many resources and people and hopefully the many citizens in our nation coming together, this truly may mean the beginning of the end of cancer. Major league baseball has already donated $10 million to Stand Up To Cancer.

Please check out the web site and listen to some of the videos. Click the link "Get Involved" at the top of the web page and maybe add a face to the Stand or a star to the Constellation. Search the Constellation and see if someone you know is already there.

I think this is a truly wonderful and good thing...people from so many different walks of life joining hands and coming together in an attempt to defeat cancer. It's so appropriate, too. When I was diagnosed, I realized cancer was the great equalizer...being rich or smart or successful did not offer any protection. This is kind of the flip side of that coin. We are all potential victims, but we can all make a difference in defeating cancer. We can all join together to battle an enemy that affects us all.

Tuesday, May 27, 2008

Safety

I was talking to a friend recently. Her son was diagnosed with leukemia over a year ago. He was just beginning first grade when he was diagnosed. He finished treatment and did well, but he will have to repeat first grade. He only attended classes for a few weeks last year as he was so involved with chemo, testing, doctor appointments and all of the traveling that entailed. She said the doctors now feel he is done with cancer forever, though they will continue to follow him.

So the crisis is over. Kind of. She said the first symptom her son had before she knew he had cancer was drenching night sweats. So she checks him at night to make sure he is dry. A lot. She wonders if there is any genetic component. Will her other children also develop leukemia? She watches them closely for the same early signs. Will her family's world come crashing down again?

They aren't safe anymore. A vicious enemy snuck into their home and into their lives once when they weren't looking. Will it come again? Or will a new and different unexpected enemy announce it's presence later?

One of the greatest insults of a cancer diagnosis is that we never quite feel safe again. We are always waiting for the other shoe to drop. Are we safe to move forward? Are we safe to plan a future? We don't want to be caught unawares again, so we are hypervigilant. We long for enough time to pass that we might feel the same sense of safety we did before cancer, but it is a long time coming. For a long time after my diagnosis I could not even say the word's "next year". I almost felt as if I'd jinx myself if I tried to plan that far into the future.

In the past 5 years was the landmark. If you made it 5 years you were considered "cured". You could leave the world of cancer and move on. Now, though, the medical community has replaced the word "cured" with "long term remission". There are enough survivors now that they've learned cancer can recur even after 5 years. When I first heard that shortly after my own diagnosis I was so disappointed, even angry. I know of another woman who read that we were all considered long-term remission vs. cured in a magazine while waiting in an oncology office.....she threw the magazine across the room. Would we never be allowed to feel safe again?

It's what makes cancer tougher than many other enemies. We never know when it's over, we never know when it's okay to feel safe again. We can't get past the crisis and declare it over. Seven years later I still am tested for cancer recurrence.

The trick is to learn to move forward in spite of the fear, in spite of knowing we may never really feel safe again. Someone told me that moving forward in spite of fear was the definition of courage. I looked up the definition: "also known as bravery, will and fortitude, courage is the ability to confront fear, pain, risk/danger, uncertainty, or intimidation."

All of us who have battled cancer and who move on to the next day are courageous. We need to acknowledge that in ourselves and celebrate our courage.

Wednesday, May 21, 2008

Relationships in the Cancer Community

I read something recently that struck home and made me think. It compared cancer patient relationships to those of survivors of natural disasters or other community tragedies. In my experience, those are sometimes situations that bring out the best in humanity, the best in human nature. I was thinking about a terrible snow storm in my old neighborhood many years ago. Suddenly my neighbors all looked out for each other and checked on each other even though we didn't know each other well. My car was stuck and as my wheels spun, several people suddenly came out of their houses and pushed my car free. We kind of developed an all-for-one and one-for-all attitude while the emergency existed. It was great. It made me believe in humanity and in the human spirit.

At first I didn't want relationships with other cancer patients. I feared loss, and feared that relationships with other cancer patients would make me feel more vulnerable. If their cancer came back, maybe mine would too. If chemo didn't help them, maybe it wouldn't help me. Everyone said I had to think positive. I was afraid someone else's bad news might have a negative affect on my positive attitude (in hindsight, I know we can't always think positive and that's okay).

I've never had a lot of patience with superficial relationships where conversation revolves around small talk. That's okay at first, but I love conversations that go deeper, that have more substance. I value conversations where we are safe to feel vulnerable. I've found I have those kinds of conversations easily with others who have a cancer diagnosis. We don't waste a lot of time on small talk, we cut right to the chase and talk about fear and faith and feelings and the epiphanies our diagnosis has brought into our awareness. I can talk to another cancer patient on the phone and we can easily talk for over an hour about things that really matter. We become close rapidly and understand each other easily. We probably spend 5 minutes talking about our marital status, houses, kids activities and our jobs. We move right past those vital statistics to what's on our mind, what we care about, what we want from life, our fears, what brings us joy, how we view death. We are unitied in a profound and meaningful way. We share perspectives those who have never had cancer can't understand. We all hate to waste time. We sometimes have the same warped sense of humor. We share the best of human nature as we weather our storms. We are in a sense related by circumstance; we become a sort of family.

I know now life is short. I have come to value being part of a community...and I have come to enjoy very much the privilege of being part of the community of cancer patients and survivors. There are people I never would have met had it not been for my cancer diagnosis. For that I am grateful.

Wednesday, May 14, 2008

Response from a Legislator

I actually got a response from one of the many legislators I emailed. Peter Visclosky, a Congressional representative, wrote me what seemed to be a personal and not canned email about government funding for the National Cancer Institute. I appreciated that. He said in part "In his Fiscal Year (FY) 2009 budget request, President Bush has allocated $4.8 billion for the National Cancer Institute (NCI). This is an increase of $5 million over the FY 2008 funding level.".

I knew the $4.8 billion number, but the increase of $5 million is not a substantial increase. I cannot understand how we can afford to spend $177 million daily on the war in Iraq while only appropriating an additional $5 million for an entire year to the NCI budget. We spend $7.4 million in a single hour to battle the war against terrorism. I'm not understanding the math.

We need more in the fight against a disease that kills over half a million Americans annually. If we are somehow able to come up with an extra $177 million daily to fight the war on terrorism, can't we come up with more than $5 million additional dollars in entire year to battle a disease that kills more than 500,000 in the US every year, more than 10,000 people every single week, 1500 every single day?

I looked up other causes of death. The homicide rate in the US is usually between 20,000-24000 a year, cancer kills that many in one month. AIDs has killed over half a million people in the USA, but it took 25 years for AIDS to kill that many, cancer does it in only one year. Motor vehicle accidents kill approximately 43,000 a year, cancer kills more than ten times that many annually. Cancer is a much larger threat than any of those killers.

It's not that I don't think we should spend money on our nation's defense, and I truly don't know enough about the war in Iraq or the defense budget to criticize the expenditure there. But when we had what was considered an emergency, the war on terrorism, we were able to find $177 million a day to fight the enemy. We were somehow able to come up with the funding.

Isn't cancer an even bigger threat to our society? Doesn't it deserve emergency funding also? I wonder how many lives would be saved if cancer research received that kind of investment? Would cancer be defeated? If $177 million a day were devoted to beating cancer, maybe even half that much, I truly believe cancer could be forever conquered.

I don't know where to go with all of that information from here, but being around scientists who sound like they are on the edge of something big but who can't pursue their findings further for lack of funding truly had an impact on me. Learning that many of these scientists are leaving the field as they can't get funding for the research they are so passionate about truly saddens me. I wonder how much have we already lost in the war on cancer?

Tuesday, May 13, 2008

AACR and CR Magazine

I felt very privileged to be a part of the American Association for Cancer Research and their Survivor-Scientist Program. The goal of the program is strengthening the connection between the research scientists and those affected by cancer. I don't belong to any other organizations, not even my own professional organization, but was so impressed by the AACR that I wanted to become more supportive and involved. I have applied to become a member of the organization as I truly value their vision and mission.

Prior to my involvement with the AACR, I was asked to interview for a column in a magazine that featured a cancer blogger in every issue. It turned out the magzine was CR magazine, the CR standing for Collaborations-Results. The magazine is the journal of the AACR Scientist-Survivor Program. In a kind of fun coincidence, I didn't know they were the journal of the Scientist-Survivor Program, and they didn't know I had applied to attend the upcoming Scientist-Survivor meeting. I only learned that after I'd interviewed.

The goal of the magazine is that of the Scientist-Survivor Program, to "strengthen collaborations and communications among cancer survivors, patient advocates, physicians and scientists with the goal of accelerating the prevention and cure of cancer". My involvement in that process through the AACR has made those goals profoundly important to me.

I was given several issues of the magazine to evaluate when I was asked to interview for the article. I loved the magazine and subscribed. It has a lot of credible and easy to understand information about ongoing studies and new findings in cancer research. It combines that information with inspiring stories and information about many of the surrounding issues we all face in living with a cancer diagnosis. I recently added a sidebar link to the magazine as it is a new publication not many are aware of yet.

I learned today that because Congress has declared May National Cancer Research Month, CR Magazine is offering a free issue to those of you who would like to evaluate the publication. This isn't an advertisement and I am getting nothing to promote the magazine, I just truly am impressed with the quality of the publication and it's mission. I think we all need to stay informed and be part of the cancer research loop; this is a great avenue in that direction. I've met many of the staff on the magazine, and they truly believe in the mission of the publication. I've subscribed to professional nursing journals as I need to stay informed. I subscribed to this journal for that reason also, as a survivor and advocate I need to stay abreast of what is happening in the world of cancer research and advocacy.

You can learn more about the magazine at:

CR: Collaborations and Results

The link to the free preview issue is:

FREE PREVIEW ISSUE

The magazine is a great link to inspiration and information for those of us struggling with cancer.

Monday, May 12, 2008

Attempt #2 to Influence the Political Process

Okay, I am very new at this but do want to attempt to make a difference in legislation addressing funding for cancer research. I found this WONDERFUL link on the American Association for Cancer Research's web site:

Find Your Legislators

You plug in your zip code and this page will list your state and local representatives (and the President). It will even walk you through easily emailing these representatives. You just need to input your own information and email message. They will add the salutations, put the email in business letter format, address and send the emails to your legislators. Can't get easier than that!

I encourage all of you to do this. It's easy, especially through the AACR link, and it can only help our goal of seeing cancer defeated. I talked to a woman recently who runs a marketing business. She said mail flyers are thrown away the first time and usually the second time they are delivered as junk mail, but by the third time the flyer is delivered, it is finally read. Maybe emailing politicians is kind of the same, they can disregard the first and maybe even the second email as not representative of the majority, but when they get a whole lot of them they finally really pay attention.

Via the AACR link I sent them all the email in italics below. Maybe you can do the same with your own story? My cancer experience has taught me not to do things that waste my time, and I truly believe this is not a waste of time, that it is something we can do to make a real difference. Something that may one day mean my web site and blog will become obsolite. I would love to see that day, a day when no part of my life is devoted to cancer causes because there are none.

I am a registered nurse and seven year survivor of a terminal cancer diagnosis. I was diagnosed with Stage IV signet ring appendiceal cancer when I was 41. My children were 10 and 11 years old at the time. This year I will see my eldest graduate from high school, being alive to see her graduate is a gift beyond words.

I have made the decision to use my survival to advocate for those diagnosed with cancer. To that end, I created a web site specific to my cancer over 2 years ago, www.appendix-cancer.com and also created the Appendix Cancer Survivor's Blog.

I am also involved with the American Cancer Society as a member of the Colorectal Cancer Awareness Network and have recently founded a non-profit cancer support organization for those diagnosed with advanced abdominal cancers, the Abdominal Cancer Connection. My organization is in its infancy and was just granted 501c3 status by the Federal government.

I have most recently become involved in the American Association for Cancer Research's Scientist Survivor Program and attended their annual meeting in San Diego last month. I became aware of innovative ideas for cancer research that cannot be pursued due to lack of funding.

Through my advocacy activities, I have become aware of the great need for funding for cancer research. Cancer affects all of us. Cancer kills 1500 daily in the US. We lost 3000 in one day in the Twin Towers, but we lose 3000 EVERY 2 days to cancer. Over half a million in the US die of cancer annually. The NCI budget is 4.8 billion dollars, but we've spent over 500 billion dollars on the war in Iraq. Cancer researchers who are unable to receive funding for their studies are leaving the field, or worse yet, leaving the country to do their research where their work can receive funding.

On behalf of myself and the many people fighting cancer that I communicate with daily, I ask that you please consider supporting or authoring legislation to increase funding for cancer research in the United States.

Sincerely,

Carolyn Langlie-Lesnik RN BSN

Friday, May 9, 2008

Cancer Research Funding and the Political Process

I'll start this off with a confession. I don't always vote, and sometimes when I do vote, I don't really know who I'm voting for. I've never done a lot in the sense of investigating candidates prior to voting. I guess I'm one of those apathetic people who doesn't have a lot of faith in the bureaucracy of government. I don't really feel my vote or my voice counts for much. I slept through high school government and never wanted to invest the time into learning about or understanding the political process.

But my encounter with Dr. Geoffry Wahl challenged me. He is a cancer researcher passionate about finding a cure for cancer. He has a PhD in Biological Chemistry from Harvard University and was a Postdoctoral fellow at Stanford University. He was the president of America's oldest and largest cancer research organization. He's someone worth paying attention to. His passion for defeating cancer is contagious.

Dr. Wahl challenged me to become involved in the political process that can direct our tax dollars towards cancer research, he feels that is the best thing we can do to help the cause. I also have a new friend who is a past graduate of the same Scientist-Survivor Program I just attended. She as a cancer advocate and survivor has become very involved in state legislation in Indiana that supports cancer patients. I really like her and admire her work also. That in addition to what I learned about Randy Pausch's efforts has inspired me.

I've decided to take on the challenge. I have no clue how to influence the political process but have decided to learn. I began today.

I know I'm supposed to contact my government representatives. Well, I don't know who my local or state government representatives are. So I Googled "Who are my state representatives in Indiana". A link appeared at the top of the search page, www.in.gov/apps/sos/legislator/search/.

I clicked the link and another search engine appeared that directed me to government positions and to a map identifying my congressional district, then to the Senate (we have two senators per state elected for 6 year terms. I guess I learned that in high school government, but I'd forgotten). The page also directed me to legislation our representatives had authored and co-authored.

My two state senators were names I had heard before, Evan Bayh and Richard Lugar. The senators names linked to their individual web sites, so I went to the sites. Each of the senator's web sites had search engines, so I plugged in "Cancer Research Funding" to see what came up. I hit pay dirt! On Senator Bayh's site this popped up "US Senator Evan Bayh today introduced legislation calling for a dramatic increase in cancer research funding". He's on our side!

I sent Senator Bayh an email via his web site telling him a bit about myself and my cancer advocacy efforts. I requested to be contacted to learn how I could support his efforts to increase cancer research funding.

Not bad for my first day ever trying to become involved in the political process, I don't think! And it took me less than an hour!

I was asked by the American Cancer Society long ago if I was interested in becoming a legislative ambassador, at the time I said no (I didn't do politics). I think I need to go back and talk to them to learn more about that.

Tuesday, May 6, 2008

Final AACR Post: Cancer Research

I am going to finish my series of posts about my AACR experience, which was so enlightening, with a post about cancer research funding.

In the United States, cancer kills about one person per minute, 1500 people a day. We lost 3000 in one day in the Twin Towers attack, but it takes cancer two days to kill that many...but it does that EVERY two days. We lose 564,000 people a year to cancer. Seventy-two percent of cancers occur in those over 60 years old, and as the baby boomers age, the number of cancer cases in the US will increase 30-50% by 2020. Cancer isn't going away.

In the US we spend $226 per person per year on soft drinks, but only $16 per person per year on cancer research. The National Cancer Institute budget for 2008 is 4.8 billion, and we've spent $517 billion on the war in Iraq. Funding for cancer research has not increased since 2004, and in real dollars factoring buying power, that represents a 15% decrease in cancer funding over just the past 4 years.

Only 10% of grant proposals for funding new research are now being approved by the National Cancer Institute because of lack of funding. So only one in every ten potential cancer cure gets a chance to be tested and explored. Young scientists who have the best and brightest minds in the field are leaving cancer research as they cannot obtain the funding to do their trials and cannot make a living in the field.

Many scientists who want to stay in the US are now finding careers outside of cancer research, but those who are willing to leave the states are being paid large amounts of money to conduct their research in other countries like China, Singapore and India. Any discoveries they make will become the intellectual property of those countries. We may one day have to travel to China to have our cancer cured, or die at home wishing we knew what might have saved us.

I listened to a cancer researcher and former president of the AACR, Dr. Geoffry M. Wahl, speak about cancer research funding for about an hour. He was passionate about funding for cancer research, passionate about seeing cancer defeated, passionate about supporting the great scientific minds who want to do research. He made such an impression on me, his passion was contageous. He so inspired me. I asked him just how I could help when he was done speaking. He told me to get involved in government, to talk to my state representatives, talk to my congresspersons.

Yikes...I'm ashamed to say I don't even know who those people are, I've never done anything like that, I've never been involved in the political process. The idea intimidates me, but so does cancer; so I'm going to try to learn what to do. Maybe I can help some of you reading my blog learn from me as I muddle through figuring out how to make a difference in the political process.

I found a great example of someone who is doing just that, though, Randy Pausch. I was told of Randy Pausch by cancer advocates I met in California. Randy is a 47 year old professor, husband and father of three young children. At the university where he teaches, professors give a "Last Lecture" to their students, a hypothetical lecture they would give if they were about to die and had to impart final words of wisdom to their students. He gave that lecture, but with a twist, it really was his last lecture. Randy Pausch has advanced pancreatic cancer with a 100% chance of dying in a few months. He is using some of his last days to do what Dr. Wahl told me to do, get involved with my state representatives, do work in the political environment to help get more government funding for cancer research.

This is an 8 minute video of the talk Randy Pausch gave to congress. PLEASE watch the video below. It will amaze and inspire you. His experience with pancreatic cancer in some ways is like our own, we have a cancer that's almost as deadly. Much of what he says applies to many cancers, including our own. Maybe some of us can follow his example.