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.
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.
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.
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?
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.