Valerie Harper Inspires

I am so touched by Valerie Harper. As I am sure my readers are aware , not only is Valerie an incredibly accomplished actress, but her warmth and grace has been so touching during this terrible diagnosis of leptomeningeal carcinomatosis, a rare condition that happens when cancer cells invade into the fluid-filled membrane that surrounds the brain. She has been told by her doctors she will likely be able to survive about three months.

I had the good fortune to meet Valerie at a hair salon that I used to go to. She was always down to earth and always friendly while at the salon to others. When I thought her appointment was ahead of mine she told me it was not and that I was to take my turn.

valerie-harper-00-300She has bravely gone on television, visiting The Today Show, The Doctors, The Talk, Good Morning America , and spoken with People Magazine. Each interview had her glowing with life accepting her diagnosis when you know she is in shock. It is so wonderful to see such a loving relationship with her husband.

She is also a lung cancer survivor. She never smoked. So many lung cancer survivor’s never  smoked or quit a very long time before their diagnosis. I think that lung cancer is the cruelest of all cancers because so many people assume it’s only from smoking and I know many people who have had or are living with lung cancer and they are all non smokers. It’s a disease that deserves no blame. There is a campaign around lung cancer where we attach the words, “no stigma”. Meanwhile Valerie caught the lung cancer early and survived it.

Now she faces such a difficult diagnosis. We see her looking healthy and beautiful and as so many with metastatic cancer do. People are surprised because they not look as though they are very ill especially at the beginning of their diagnosis. Different cancers at different metastatic stages are like that and each one has a different set of statistics for how much time a patient has a chance of living. With my close friend Li when she was metastatic we often talked about living through the dying and making the most of the time we have. Like Valerie we wanted quality of life, not quantity.

There is a wonderful article by Donna Kaufman in I Village that talks about the 10 most inspiring things we’ve learned from Valerie Harper that I am going to copy and paste here. Valerie’s courage and willingness to share this private part of her life with all of us teaching us so much is just beautiful.

The 10 Most Inspiring Things We’ve Learned from Valerie Harper

1. Don’t blame yourself for tragedy. “If you die, you’re not a failure,” Harper said on Today. ‘You’re just somebody who had cancer. And that’s the outcome.”

2. Live in this moment, right now. “I’m not dying until I do,” Harper told Today. “I have an intention to live each moment fully.”

3. Remember that death is part of life. “I really want Americans, all of us, to be less afraid of death,” Harper said on The Doctors. “Know that it’s a passage, but don’t go to the funeral before the funeral. While you’re living, live.”

4. Let yourself be sad — but stay hopeful. “I don’t mean this to be Pollyanna! I allow myself the grief,” Harper told Today‘s Savannah Guthrie, when asked if she ever felt sad. “What I’m saying is keep your consciousness, your thoughts open to infinite possibility and keep yourself open to miracles.”

5. Don’t give in to despair when there’s more pasta to eat. When Harper first heard her diagnosis, she said on The Doctors, “I broke down. I absolutely sobbed. I let myself do it. Then I said, ‘Okay, you’ve been the drama queen. Now get over it and make the pasta.'”

6. Deal with your battles in the way that makes sense to you. When one of the Doctors asked Harper why she was spending her final days on a press tour, she responded, “Dr. Travis, this is not for everyone. This is my way of dealing with it.”

7. Don’t live in denial. “I’m trouble,” Harper admitted in a video message for People, “but when the smoke clears, I’ll be standing. Until I’m not. And I’m ready for that, too.”

8. Don’t forget to live just because you’re dying. “‘Incurable’ is a tough word. A lot of people were calling — ‘Can I come by the house?’ ‘Are you in a wheel chair?’ — because they hear it as this death sentence,” Harper said on Today. “Which it may be. But I’m not dying until I do. I promise I won’t.”

9. Never be afraid of what’s next. “I don’t know what’s ahead, but I’m ready for it. Onward!” Harper told fans in her People message. “I love you. And know that I’m okay. I am okay on this venture.”

10. Keep your loved ones close. Harper says she’ll be spending her last months with her husband and daughter while she undergoes treatments to try to slow the progress of her disease. “My doctor said it’s incurable — so far,” Harper said on GMA. “And I love that possibility. We all need to live in infinite possibility.”

Valerie speaks of how important it is not to blames oneself for a cancer diagnosis. She talks about living in the moment and not focusing on the dying. She says to deal with your battles in your way. For her it was going on Television and speaking to her fans. Most important she speaks of keeping family close. Even though she knows that her disease is “incurable”, she still lives in a world of “infinite possibility.”

Her message is one of so much hope for so many that have faced incredible obstacles in their lives. I just love everything about Valerie!

Happy New Year – Flying Home

I am sitting on a plane with wifi and reading other breast cancer blogs which I did during a wonderful holiday with my family. They have me thinking a lot. My need to write today has to do with the fact that as I take this flight home I am flooded with memories and feelings of my past flights going back to California when I was living closer to my family on the southeast coast. I flew many times on this flight to California running to my friends especially my very close friend Li who went through chemo with me and had stage IV MBC , while on the east coast my brother was going through stage IV esophageal cancer. His health climbed faster downhill then my friend because of the stage at which he discovered his cancer.

I have been so happy working away at being a patient advocate and doing everything I can to make a difference and I am reading different things and all I can say is this may sound crazy but for me it was so much easier being the patient in jeopardy going through my primary chemo at an earlier stage than having to watch my brother and best friend go down their line of chemo drugs and disease progression. I ask myself over and over why it wasn’t me and why it was them as I stood by and they let me in fearlessly clinging to the joy they could find in life and wanting to have as much quality of time in life with them.

After I had breast cancer twice in California I decided to move closer to be with my family, because I just was drained from all the constant treatment and I missed my family. Little did I know seven months later my father would find out that he had pancreatic cancer and luckily I had moved close to the family and was able to be with him, since he died 10 days from finding out his diagnosis. I think in some ways he was better off not knowing that he was so sick until the end.

Being with my brother and my best friend as they went down their line of drugs was just as special, yet at the same time I have so much guilt that it wasn’t me. I luckily rented a room in California so I could fly back and forth and keep my medical Doctors in California.

gene-technology-7830After my brother died I moved back to California as everything shifted and luckily I had been at the right place …at the right time…while my friend got close to the end. I am on another flight knowing this cycle will not stop. A very close friend has Stage III – IV lung cancer and is such an inspiration. I have a few more friends who are going through Stage IV breast cancer. I have stepped in cancerland and there is no turning back. I am not Stage IV and for that I should be grateful and (don’t get me wrong) I am but it’s hitting me as I return to my home. I am saddened by the sheer loss of things around me.

At the same time, I refuse to keep complaining and continue forward with all of my advocacy work to make a difference…It’s just that I am in a moment where I feel like that rat on the ferris wheel as more people get bad news. Yet my father, my brother and my best friend all gracefully lived in the moment as much as they could to hold on to joyous days of life while they knew they were going to be taken away from their disease. I asked my brother if he was scared and he said he wasn’t….Life…death…he just accepted to his fate and made the most of what he had. I asked my best friend and she said she wasn’t scared either. To her she was looking forward to seeing people when she died.

With these things happening around me I can’t help asking myself why them? At the same time I refuse to push myself in to the dreaded corner of anger and resentment at fate and get a grip knowing I must be smart enough to make the most of whatever time I have. In the back of my mind one of the bloggers was angry because they are stage IV and they were sick of hearing they should live in the moment. I think the reason she was angry is the word “SHOULD”. Instead we all COULD try to live in the moment.  If we don’t and we can’t make the most of out time while we are here, then why bother fighting to live. This is it. Take it or leave it. I have to try to make the most of my moments no matter how little control I have over what Stage of disease or peril I or my closest friends are in. At the same time, I am not trying to pat myself on the back as much as be grateful I have the ability to make a difference and while I believe I have NED (no evidence of disease) make the best of it. My father made the best of his life and had no idea how sick he was. I think he was better off not knowing until the end.

It’s not the analogy of “I could get hit by a bus” at any time before my friends who are in Stage IV cancerland know the bus is coming as much as why waste time getting so upset that I bring a harsher depression on myself as I have enough of that from all the hormones that have been stripped from me to theoretically keep me NED. The truth of the matter is I can wallow in anger and resentment or forge ahead with optimism and lack of fear for what is happening inside my body and live my best life. That is truly the only way I can make sense of all that is surrounding me.

Honestly I am proud of how I talked myself out of wallowing in self pity as I return to California after a wonderful holiday with my family. I am also thrilled that I have this wonderful machine and social media to help make the most of this flight as I plan to return to all the enormous tasks I have facing me and get back to my routine while I know there is so much work ahead of me to make a difference in Breast Cancer Land. And whether you are healthy, having health issues, in cancerland, affected by cancerland or just reading this because you care about me and what I have to say…thank you for letting me use this platform to express what is happening around me.

Meanwhile it’s a new year. Make the most of it, love yourself and try to enjoy everything around you no matter where your body or mind is at. This also includes what your loved ones are going through. That is the only way all of us can live our best lives and appreciate so much of what we have.

The Relationships we don’t think of when we see the same people every day

My fellow blogger Lori at “regrounding, of chemo, cancer and red, red wine”  wrote a great blog talking about the man who makes her coffee every day at Panera and that she realizes that she sees people every day and doesn’t know their names or wonders about all the people around her that she sees but doesn’t know. When I went to live in Nashville for a few years in between living in Los Angeles, I got used to asking people their names and trying to remember them. I knew my mail carrier, the people cleaning the apartment complex, people at the gym, etc. My postal worker Steve was so kind that when I needed to send my business mail to my home address from my brother’s office because my brother died, he wrote me the kindest note about my brother’s death and wrote me when he was changing his route.

I carried this way of life with me when I permanently moved back to Los Angeles, and I love saying hi to the woman delivering my mail, waving at the UPS man who I also see driving when I walk my dog, other dog owners and their dog’s names, the women who clean and vacuum at my gym, etc. It’s a great feeling smiling at them everyday and asking how their day is going. Sometimes it takes me two times to remember a name, but I do my best.

I think it’s important to take the time trying to get to know the people around you especially as our lives have gotten so complex and we are so used to being dialed in to our work and daily life on the computer. This in no way takes away from the amazing friendships I have made as a result of social media and I cherish the friends I have met online especially when it comes to breast cancer.

I think it is helps me feel connected to my surroundings by acknowledging the people who I run in to most days. There’s an office building I walk by every day when I walk my dog Shelby and I always wave to the security guard at the front desk  as I pass him. One day he was on the street talking and I walked over and learned his name is Juan, so now when I walk by I wave  at him and say “hi Juan”.

Taking a moment to ask the names of people I see often always lifts me up even if I am having a rough day. If you are reading this and it is not your custom or practice, try it. I think you will find the same joy that I do in being surrounded by wonderful people working hard every day to do a service that helps your day or is just someone walking their dog  just like you are.

Patient Advocacy in Research: Merely an Afterthought? : The Patient: Patient-Centered Outcomes Research

HELPA8FC549B4C08CBC78-main(I found this article very interesting for all of us who are patient advocates. It was written by Musa Mayer of advancedbc.org.)

———————————————————————————————————————————–

In 20 years of breast cancer advocacy, I’ve witnessed major changes in attitude toward advocates on the part of basic researchers, clinical investigators, and others involved with the science of the disease.

Not so long ago, even a seat at the table – much less a vote – was hard to come by. Advocate presence was met with puzzlement, if not outright resistance. How could we possibly understand the complex scientific issues under discussion? What, exactly, was our expertise?

Within the space of a very few years – not coincidentally with the increase in advocate-driven research funding – waves of change began to wash away this resistance. Appreciation for our fundraising efforts, mixed with grudging recognition that people who actually live with a disease have useful perspectives, were contributing factors. In the wake of the 1970s and the women’s health movement, medical paternalism was relaxing its grip, and a new generation embraced the patient-doctor relationship as a partnership of equals. In the late 1980s, AIDS activists demonstrated the power of organized pressure on access and policy when lives were at stake. In the early 1990s, the Internet began to connect and empower a steady stream of newly informed patients.

It was in just such an online community, the first breast cancer mailing list, that my own advocacy was born, from a desire to ‘pay forward’ the information and support offered me when I was diagnosed. What began as a small, personal ripple expanded outwards as I recovered from treatment and moved from helping the members of my support group to reaching out to women in emerging organizations and communities, then to all women with breast cancer.

I joined with other advocates. Not satisfied with offering only emotional support, we called for better, less toxic treatments available to everyone. The standard of care seemed harsh and crude. Some referred to chemotherapy, surgery, and radiation as ‘poison, slash, and burn.’ Rejecting the metaphors of war, we called for gentler, targeted therapies with less ‘collateral damage.’ To accomplish this, more and better research was needed.

We were not content with just handing over the research funds. We looked with suspicion at the minor progress made in Nixon’s war on cancer1 and began to raise questions about the direction of cancer research, and the lack of collaboration and support for novel ideas. Funded through the efforts of advocates, programs such as the US Department of Defense Breast Cancer Research Program[1] were born.

In the years since, the presence of advocates has become commonplace in the world of cancer research. We sit on US FDA advisory committees as voting members, on Institutional Review Boards (IRBs), and data safety monitoring boards for clinical trials. We serve on Specialized Programs of Research Excellence (SPOREs) and in the Cooperative Groups.2 We rate grant proposals in study sections, and help determine research priorities. We speak at conferences, and are co-authors of papers, posters, and abstracts. We offer input to industry about trial design and enrolment, drug safety, and access to new therapies in the pipeline. Our activism runs both ways. By translating what we learn of the research back to the patients we serve, we help them to make better, more informed treatment decisions.

In preparing this article, I shared my concerns with Patient Advocates in Research (PAIR), a long-standing mailing list. The flood of responses spoke candidly about our difficulties, as well as our roles and strengths.

Several emphasized the important role we play in encouraging collaboration rather than competition among researchers, helping them to concentrate more on meaningful goals, and less on professional and career concerns. This is no easy task. It is the nature of research to “meander from one disparate place to another,” explains Deborah Collyar, President and co-founder of the PAIR mailing list, “which keeps the focus on the individual PIs [Principle Investigators] who compete with each other for grants. It’s like a game of musical chairs.” To make an impact, she suggests, “We have to speak up, and remind them to act like big boys and girls to get something done.”

Colorectal cancer advocate Kate Murphy agrees, “Research can answer interesting but irrelevant questions, provide statistically significant but clinically insignificant results … but in the end, does it matter to patients? Researchers can lose sight of the real goals, and we can keep them honest.”

The very presence of advocates can make a difference. “Not only does my face and my story inject reality into the cancer research enterprise, it seems to add some sense of urgency,” says Murphy. “We need to get the job done now without quibbling and without egos.”

Sometimes, advocates are the only ones who bring a real-world perspective to research discussions, says breast cancer advocate Cheryl Jernigan. “We’ve got to get beyond incremental steps that simply add to already unsustainable growing healthcare costs, to research that makes a substantial difference in the length and quality of life, that will be accessible in the community setting and not break the bank.”

An education in the language and methods of science is critical. Trained advocates challenge biases researchers may have had, by presenting themselves as thoughtful and intelligent peers and colleagues, well versed in the research process. But still they are underutilized at times, and unsure of their roles. “Most researchers who have engaged with us seem to really appreciate our involvement,” says Jernigan, “but don’t really know when, where, or how to engage us, and we don’t always know what it is we can do.”

Joyce Graff, advocate for patients with Von Hippel-Lindau (VHL) disease, a genetic blood vessel malformation, has experienced little support from the SPORE on which she serves: “Periodically, they will turn to me in a meeting and ask whether a proposed clinical trial design will appeal to patients.” But her opinion is solicited only after trial proposals and informed consent documents have been submitted to the IRB.

Being invited to endorse, or recruit for, research studies without participating in their creation is a familiar complaint. I’m not alone in having been invited to join steering committees for registries and clinical trials only after the important initial decisions are made. Substantive roles for advocates can be hard to come by.

But when we are brought in early in the process, we can make a genuine contribution, Collyar feels, “We help them think about how they will actually implement the trial and how to reach as broad an audience as possible, ethnically speaking, as well as eliminating bogus eligibility requirements.”

Many of us have experienced last-minute calls and emails from researchers a day or two before grant proposals are due. Clearly, the PI has discovered that advocate involvement is required and is scrambling to find someone. We become an obstacle to be surmounted, not a resource to be used.

I’ve been fortunate enough to have also had the opposite experience. Involved in a major research grant to study brain metastases in breast cancer,[2] my input, and that of other advocates, has been invited and welcomed at all stages of planning and implementation, with the complete confidence and trust of an enlightened PI who has worked with advocates for years.

Central to drug development, regulatory policy is also of intense interest to advocates. I first served as a voting Patient Representative[3] on the FDA’s Oncologic Drugs Advisory Committee a decade ago. At the open public hearings, diverse advocacy perspectives are on display, ranging from passionate pleas for access to calls for tightened regulations. While some view the agency as a bureaucratic and unfeeling barrier to access, the FDA’s mandate always made sense to me. I too was concerned about risks and benefits of new treatments, about levels of evidence and adequate proof of safety and efficacy. Having witnessed the rise and fall of bone marrow transplants in breast cancer, I knew how catastrophic the premature adoption of unproven therapies could be.

As a graduate of Project LEAD, the National Breast Cancer Coalition’s science training course,[4] I fervently believed that advocates needed to understand the research process, and to be able to look beyond immediate needs to what would offer current and future benefit for all patients. To that end, I co-developed a free, online training curriculum for the US Cochrane Center in evidence-based healthcare specifically for advocates.[5]

If advocates only understood the research process, I reasoned, they would surely take more nuanced, thoughtful positions on issues of evidence and access. But reason trumps emotion only rarely when lives are at stake, and desperation fuels inflated hopes for treatment efficacy. Described by ethicist Rebecca Dresser as “advocacy’s emphasis on the bright side of medical research,”[6] this unwarranted optimism has the potential to increase demand for unproven treatments, and to make it harder to recruit definitive studies. Patient bitterness and public disillusionment with the research enterprise are sure to follow.

Science is hard. “Most of our experiments fail,” a researcher I work with reminded me recently. For advocates, removing the blinders of wishful thinking, replacing them with a clear-eyed, cautious view of scientific research, is sobering but necessary. To do so while maintaining a hopeful stance with the patient communities we represent is harder still. But then, no one promised the truth would be easy.

Back to Top | Article Outline

References

1. Congressionally Directed Medical Research Programs, Department of Defense. Breast Cancer Research Program [online]. Available from URL: http://cdmrp.army.mil/bcrp/default.shtml [Accessed 2011 Jan 30]
2. Center of Excellence, DoD Breast Cancer Research Program [online]. Available from URL: http://brainmetsbc.org/en/content/about-center-excellence [Accessed 2011 Jan 30]
3. US FDA. Patient Representative Program [online]. Available from URL: http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates [Accessed 2011 Jan 30]
4. National Breast Cancer Coalition. Project LEAD [online]. Available from URL: http://www.stopbreastcancer.org/learn/project-lead/vision [Accessed 2011 Jan 30]
5. Mayer M, Dickersin K. Understanding evidence-based healthcare: a foundation for action. US Cochrane Center [online]. Available from URL: http://us.cochrane.org/understanding-evidence-based-healthcare-foundation-action [Accessed 2011 Jan 30]
6. Dresser R. When science offers salvation: patient advocacy and research ethics. New York: Oxford University Press, 2001: 153

: Patient-Centered Outcomes Research:

1 June 2011 – Volume 4 – Issue 2 – pp 69-71
doi: 10.2165/11590710-000000000-00000
Editorial

Author Information

 AdvancedBC.org, New York, USA

Correspondence: Ms Musa Mayer, MS, AdvancedBC.org, 250 W 82nd Street, Apt #42, New York, NY 10024, USA.

E-mail: musa@echonyc.com

See on adisonline.com