Monday, October 3, 2016

Ribbons Are Not a Cure

I appreciate the power of the ribbon. It is an easy-to-recognize symbol, and an important tool in promoting cancer awareness. Early detection and prevention is the key in several cancers.  My gynecologist once remarked, "Almost no one dies of cervical cancer if they get regular pap smears." And if colon cancer is caught early, during a routine colonoscopy, pre-cancerous polyps can easily be removed and debilitating progression prevented. But some cancers, like breast cancer, are lurking beasts. Breast cancer, even after successful treatment, can sit silently for years, sneaking back to penetrate bones, brain, lung, or liver — ultimately killing the unlucky victim.

Cancer survival rates are reported based on five-year survival. The five-year survival rate of breast cancer is 91 percent. The truth, though, is that 30 percent of those diagnosed at an earlier stage of breast cancer will eventually develop stage 4 metastatic breast cancer. Stage 4 breast cancer has a survival rate of zero. But in spite of the prevalence of metastatic breast cancer, the disease gets very little funding for research — roughly 7 percent of the breast cancer research investment.

The pink ribbon has done a lot of good. It has reminded people to get screened, and it has helped to raise a huge amount of funds. But at the same time, it has been used to raise money for purely corporate pockets, including the pockets of several prominent breast cancer charities. It has become a symbol of the idea that everything will be OK, breast cancer is only an annoyance, just a year out of your life, and you'll go on happily from there. The pink ribbon as a brand is a misrepresentation of the truth of breast cancer. And, most importantly, it is not a cure.

What the ribbon should represent is the need to fund medical research in order to save lives. Cancer continues to be the second leading cause of death in the U.S., behind heart disease. Lung is the greatest cancer killer, followed by breast cancer for women and prostate cancer for men, leaving colon cancer as the third greatest killer.1 All of these cancers have their own ribbons (white for lung cancer, blue for colon cancer, pink for breast cancer and light blue for prostate cancer), but still, millions die from these diseases every year.

Cuts In Medical Funding

Yet, in spite of these death rates, medical research funding in the U.S. has been cut every year since 2004, according to a 2015 study from the Journal of the American Medical Association (JAMA). Cuts in medical research funding in the U.S. has mostly hurt early-stage research, specially "proof-of-concept research," which demonstrates the feasibility and usefulness of a treatment. This means some potentially life-saving discoveries never go further, due to lack of funds. A big part of the reason for the cuts is due to the economic downturns of the early 2000s, and an increasing emphasis on national security following 9/11.

As a co-author of the JAMA study states, "If the U.S. wants to ensure that the health of its citizens is taken care of in the future, or that research in the country won’t be hindered by non-U.S. patents, the U.S. needs to increase spending in biomedical research."

The cuts continue. The Department of Defense Congressionally Directed Medical Research Program (CDMRP), a peer-reviewed research effort studying several diseases such as prostate, breast, lung and ovarian cancer, multiple sclerosis, spinal cord injury, and autism, is the next target. Sen. John McCain (R-Ariz.) attempts to cuts this program, introducing an amendment to the Senate each year.

Becoming An Advocate

What can you do to push for the restoration of funding for life-saving medical research? Certainly, the American Society of Clinical Oncology (ASCO) has made this one of their major issues, creating the ACT Network  to help regular folks like you and I become advocates. ASCO also offers a helpful guide to Being a Cancer Advocate , along with a link to the Coalition of Cancer Cooperative Group's list of advocacy organizations. The list is lengthy but obviously does not cover the entire scope of advocacy groups. For instance, metastatic breast cancer groups such as METAvivor and the Metastatic Breast Cancer Alliance are missing from this list.

But in addition to working with an advocacy group, research organizations often seek patient/consumer perspectives on proposed or ongoing research.

The DOD CDMRP has its Consumer Reviewer program where consumers read and evaluate research study applications for relevance to the consumer community's needs and concerns.

NCI's Research Advocacy program looks to incorporate the collective patient perspective into NCI research and help keep NCI research focused on patient benefits and outcomes.

The FDA Patient Representative Program allows patient representatives the opportunity to advise regarding drugs, devices, and biologics currently being considered for approval.

Social Media and Advocacy

Finally, social media has become increasingly important in healthcare, with doctors, researchers and patients from around the world joining in disease-specific Twitter chats to exchange ideas, information and experiences. Twitter communities like #BCSM (breast cancer social media) and #LCSM (lung cancer social media) hold regularly scheduled topic-centered chats.

The hashtags not only provide quick access to information, but have begun to be used as an advocacy rallying cry. Tagging a Tweet with #BCSM serves as a call to the breast cancer community, and helps bring the realities of living with cancer to the medical community's attention.

“When you see two women in the middle of the night having a real raw conversation about their chemotherapy side effects, it is very different from what you see in the office,” says Dr. Deanna Attai, clinical professor of surgery at the David Geffen School of Medicine and co-moderator of #BCSM.

In addition, cancer advocates are using social media hashtags as a call to action or to coordinate advocacy efforts. Metastatic breast cancer advocates, for instance, have begun to use the hashtags #PinkIsNotaCure and #DontIgnoreStageIV to highlight the group's under-served reality and to call for more equal funding of metastatic cancer research. Healthcare social media has become such a movement, the Symplur Hashtag Project was created to provide a taxonomy for healthcare hashtags.

Every Little Bit Helps

Whatever way you get involved, even the smallest effort will go a long way. Sign up for ASCO's ACT Network or contact your Senator or Representative directly. Talk about your cancer experience using a disease-specific hashtag on Twitter, and let the world know that we are more than just a ribbon. Apply to be a patient representative and provide invaluable patient perspective to researchers. However you choose to fight, fight. Fight for medical research funding. Fight to demand a cure. Fight to stop cancer from killing millions more worldwide. Fight so that we no longer need cancer awareness ribbons. Ribbons are not a cure.

Also published on CureToday

Cancer Calls

Originally written February 2012
There have been people who have not been in my life for many years. At least not much. My father has been 98% absent (his choice). My brother has been 70% not around (my choice). These are people I have had some difficulty interacting with.

With my father the difficulty comes from the fact that he has been absent. Totally absent.  He doesn't call, doesn't visit, the expectation is that I come to visit him and even when I do come to visit, a 6 hour drive, he won't cross the room to say hello.  He waits until we run into each other as we mingle at the family gathering.  In the over 20 years I lived in Wisconsin as a child and adult, he visited twice.  In the 11 years I've lived in Washington, DC he has never come to visit. He came to town for a conference, called me the night before to join him for dinner, and even though he was in town for a week and I invited him to my house, he never called again.

The problem has been that I have blamed myself for my father's behavior. I thought it was something I did or said that made him go away (he's been going away since I was a young child).  I thought there was something wrong with me, that if my father didn't love me, then no one would.  It has taken years and the million-time repetition of the statement "Your father blew it"  for me to realize that it was he, not me, who was broken.

With my brother the difficulty has come from his belief that the best way to live life is his way, and his insistence on lecturing me about this during almost every conversation. He means well. He cares. But it was a constant lecture.  It got tiring. I finally cut back on my contact with him.  In the last few years I've begun to initiate contact with him more often, but it's been slow.

Since I've gotten cancer though, the calls from my father and brother have been coming in weekly.  I call them Cancer Calls. My weekly Cancer Calls.  Perhaps they think I'm going to die. Who knows. But I'm actually kind of liking the conversations.

Still, the calls come at a bit of a price.  My father is the same man he was before. He hasn't changed.  He somehow manages to be absent while being present.  For example, because he's been calling me, I decided to return the favor and call him one day. I unwittingly called him during his meal time. He was in the middle of eating. He didn't really want to talk.  Instead of saying, "Can I call you later," he simply made it clear he wanted to get off the phone.  As a friend put it, "He wants to pay attention to you, but only on his terms."  Point taken.  Keep my expectations low.

And then there was his visit to my house recently.  My father has never visited me here in DC before. We've lived 6 hours away from each other for 11 years. I've tried to ask him to meet me half way. I've driven most of the way down toward him and asked him to meet me there. I've driven all the way down to visit him and he's made little effort to seek me out and speak to me while I was there.  I just want him to make an effort toward me. Anything. Even driving 1 hour to meet me would help. Even just walking across the room to say hello.  Suddenly he decides he's going to visit me at my home in DC. He's bringing his posse, two of his children (i.e., my half brother and sister Adam and Sarah).
The first date he names to visit is February 3rd.  By February 2nd I've not heard from him, so I email him. He replies, telling me he's planning to visit on February 24th instead. February 23rd I've heard nothing. I assume he'll be arriving around dinner time on Friday, February 24 since that is my chemo day and I need someone to be there to keep tabs on me after chemo.

Thursday night he emails. He tells me they will be leaving after work on Friday and will arrive at my house late Friday night. A 6 hour drive. This means they'll arrive maybe 11:00 pm or 12:00 am.  This also means I will need to wait up for them after just having had chemo and suffering from post-chemo exhaustion. The idea that the three visitors in question couldn't take the afternoon off from work to arrive earlier in the evening on the day of my chemo stupefied me.  It spoke of insensitivity and self interest, rather than of helping. It confirmed everything I'd experienced of my father before, he cared the most for himself, rather than about helping or really caring for me.

I broke down sobbing. I sobbed over the phone to my friend Lisa and after that to my friend Frank. Both said the same thing, but it was Frank who put it best. As he explained, "An asshole with a daughter who has cancer is still an asshole."  That hit home.  Both Lisa and Frank spoke to me of doing what I need in order to take care of myself, that I should ask my father to either come the next day or stay in a hotel so I could sleep.  And then I was advised to find someone else to stay with me Friday night. Lisa volunteered, God bless her.  The point was taken emphatically this time.  Keep my expectations really, really low. Do not expect anything from my father. He is the same man as always. Just do what I need in order to take care of myself. And don't do anything that would harm me such as agreeing to wait up on Friday night through post-chemo exhaustion to fit his schedule.  This was about me and my physical and mental health. I need to protect it.

My father agreed to these conditions. The posse showed up early Saturday afternoon. I spent the day with them. My brother Adam did much work around my house and when my father left, my father gave me money to help defray the cost of my treatment.  The money was greatly appreciated. My father would not help pay for my college education back in 1983 since he had decided to use the money to pay for my brother's medical school, an action that offended my brother, God bless him.  But he could help pay for my cancer.  I went to a public college which was cheap but still a good university.  At this point I figure I've gotten my Freshman year of college money back.  Thanks, Dad. It is a big help.

As they say in Alcoholics Anonymous, acceptance is the key.  If I can accept my brother and father for who they are, I can talk to them without a great deal of disappointment or pain. With my brother it's been learning that his intent is good, his follow-through sometimes a challenge, and I can end the conversation. With my father it's been learning that my father is who he is and don't get my hopes up about him or our relationship.  Still, I find it ironic that after all the years of my desperately trying to get my father to pay attention to me and fix myself and become lovable to him (I did finally give this effort up, by the way), that now that I have cancer he's acting more like the father I wanted all along; a father who calls, seems to be concerned, makes some effort towards me.

Would I have gotten cancer before this in order to develop a relationship with my father? No way in hell. That ship has sailed. My father blew it and anything that happens at this point is more about my healing myself than about us having a bond. But, hey, now that it's here, I'll take the Cancer Calls with a grain of salt.Who knows what will happen.  All my efforts will go to keeping the interactions positive and keeping me safe.

Also published on CureToday

Medical Emergencies and the Single Girl or How I Use Medical Identification Jewelry to Keep in Touch

When my mother suffered a hemorraghic stroke in August 2008, we could not find her living will for two days. Now my mom had watched her own father die a lingering death, his body tied to a hospital bed by tubes, IV's and a catheter, while he hung in a tenuous coma for over a month.  Mom had sat by my grandfather's hospital bed the entire time, watching her father fade as the medical staff moved constantly in and out of the room to tweak the dials delivering the medication that kept him in delicate balance between life and death.

As soon as my grandfather died, my mother made sure she had a living will, or advance directive, in place to make sure the same thing never happened to her.  The thought of being trapped in a coma for the rest of her living days scared her so much, in fact, that she purchased a copy of the book Final Exit, and kept it close at hand so she could feel she had control over how she would die.

So not being able to find my mother's living will, while she lay in a hospital bed, her brain destroyed by the hemorrhage, her body tied to tubes in the same way her father's body had been, scared the heck out of me.  Finally, we found the document, and my brother, my mother's health Power of Attorney, flew in from Florida, and we sadly helped my mother die.  According to her wishes.

I would not recommend the experience of helping a loved one die. It is a horribly sad experience. But I knew this was what my mother wanted in that situation. And I know it is what I want for myself if faced with the same thing. So I also have a living will.

The question became though, what if like my mom, I collapsed suddenly?  I live alone, far away from family. What if I were to fall in the middle of the street, only strangers nearby to help? How would they know who to call?  And what if my loved ones could not find my living will?

At the time I was friends with a woman who wore a medical alert bracelet.  I began to look at wearing one myself. I discovered that medical alert identification companies often offer a service that links your medical ID to a living will/advance directive filed with their organization.  They'll also keep a list of your emergency contacts, your doctors, and a list of current medications.

Morbid it may be, but I was thrilled.  I paid the $35 a year membership to the MedicAlert Foundation, and got my own little medical identification bracelet.  The humorous part of the membership came when a representative called me asking what medical condition I wanted engraved on the bracelet.  "Well," I said, "I have high cholesterol."  We both laughed. The sad thing was that only three years later, I would truly qualify for a medical identification bracelet with Stage IV breast cancer, a medical port, and blood thinners.  I feel honored.

But the most important thing is that when I wear my medical identification bracelet, it gives me a feeling of safety and assurance. I know that if I were to suddenly lose consciousness, hopefully an unlikely event, medical personnel will be able to quickly find my emergency contacts, talk to my doctor, find my living will, and receive an up-to-date list of all my medications and conditions.  I know that more than 95% of medical personnel check for medical ID jewelry. And with current medical information, hospital staff will be able to make better decisions in my care. What more can a single girl need?

Here's the complication.

I am a stylish gal.  I wouldn't be caught comatose wearing the dreary stainless steel drab of a typical medical identification bracelet. You know that I found sources for fabulous yet practical medical ID jewelry. Of course I did. The wonderful things is that all a good piece of medical alert jewelry needs to work as planned is the Caduceus symbol, the phone number for the organization with my records, and my medical alert ID number.  Stylish and safe. A single girl's dream. 

Where can you find this stylish jewelry?  Well, let me tell you about a few sources.  There are many other sources out there, so keep in mind that this is only a start.
Another great source of medical identification jewelry is the site, which is sort of like eBay for artists.  There are many beautifully crafted and affordable pieces available through this site.  Just search for "medical alert" or "medical identification".

So get shopping, gang. Buy that beautiful piece of jewelry. Send in that medical information, contacts, and advance directive for easy retrieval.  And then relax, enjoy, and go live your life.  We'll be here when you need us.

Also published on CureToday