I recently posted this article (from the Cracked website) on Facebook and was so impressed with the insightful comments my friends had regarding it. I am posting it here for those of you that did not see it.
What are your thoughts? Do any of these “ring” true for you?
This post was written by my daughter for the blog, My Aspiring Soulful Life. Check out the other great posts on the blog.
My wish for you today is that you experience many Miracles,
While attending a conference in Arizona last year, I had the pleasure of hearing Shelley Nasso, Chief Executive Officer of the National Coalition For Cancer Survivorship (NCCS), speak. Her presentation was well done and I learned so much from her about how survivors can play a key role in public policy. I knew immediately that I wanted to know more. Therefore, when I learned that NCCS was doing a conference this year, I signed up. I’d like to share with you some areas that were highlights of the conference for me.
The conference was called the CPAT (Cancer Policy and Advocacy Team) Symposium. Don’t let that fancy name fool you. It was definitely a working conference from morning until evening, plus homework before we attended. The agenda was diverse and practical. The point of it was to help advocates understand the current healthcare system, what the pressing issues are for survivors, and to develop skills to be a part of changing it. Not an easy task, hey?
The priority for the conference was to learn the specifics of the Planning Actively for Cancer Treatment (PACT) Act currently being considered by the Senate and House. This bill will provide all Medicare recipients the option to jointly develop with their doctors a written plan of cancer care. Doctors would actually be reimbursed by Medicare to have this important discussion. Our hope is that other insurance companies would follow what Medicare does. (Did you know 60% of cancer patients are Medicare recipients)?
Our task was to go to visit respective Senators and Representatives on Capitol Hill and request they sponsor the bill. I was joined by another survivor and caregiver from NC and we were able to meet with all the offices and engage in important conversations. We are now following up with our senators and representatives. If you would like to join me, please go to http://www.canceradvocacy.org/cancer-policy/pact-act/write-congress. It only takes 2 minutes. (I was told yesterday that hearing from constituents would definitely help in a specific request).
Some other highlights for me at the conference included the following:
*Why is Survivorship Advocacy really necessary? What is the real impact for individuals, including follow up care? How can we, as “cancer novices”, deal with a life threatening illness and add this role at the same time?
*Who decides what quality of care and shared decision making is and how can we measure it?
* How can we take charge of our cancer care and make sure our team listens to us?
* Learning about the economics of cancer care. Frankly, my head is still spinning on this one.
If you’d like to know more, go to http://www.canceradvocacy.org. I plan to make NCCS a priority in my volunteer advocacy work and would love for you to join me!
Have a great summer!
Today our family will be doing the same thing that many families will do. My children are all in town and we will be spending the day together and being very thankful for all the blessings we have. I’m thinking there might also be some special treats bestowed upon me 🙂 Like many other women, my first thoughts upon waking was how incredibly thankful I am to have such a wonderful family who makes this day so special for me. My next thought was one of those kind of emotions I have that I am almost afraid to acknowledge. I moved very quickly to the overwhelming gratitude I feel to be here today with my family. There were times that I did not want to look into any crystal balls to see the future. The reality was that there was very little chance that I would see many more Mother’s Days on this earth. It’s truly impossible to express how humbled I feel to still be here and the joy of yet another precious gift of a year.
Although I will cherish physically and emotionally being with my family, my thoughts and prayers will be with the many children I know that have lost their mothers to cancer. I have learned to not question why I am here and their mothers are not. In fact, many of their mothers are the very ones that helped me to move pass that guilt and anger. But, I will feel much sadness that my friends are no longer here to be with their children and grandchildren. I feel so many emotions around this. Sadness and much frustration that women continue to die of cancer and that I can impact that in only a small way. My wish is that one day soon I will not be writing this post on Mother’s Day.
Today we will be joining other families in participating in the Lydia Legacy, Inc Photo event. This was established by my friends, Dina and Carin several years ago as a way to remember their sweet mothers. The pictures I receive from the incredibly talented photographers that donate their time will be wonderful. However, the comfort I will receive from the sharing with others in remembering their mothers will be such a blessing to me.
To all of the wonderful children (both young and old) that have lost their mothers, please know what an honor it was to know them and be a part of their life and to continue to be a part of yours.
Much love to you all…
Several months ago, I joined a cancer survivor online support group created by a friend of mine that was having much difficulty. The women in the group were exploring a very specific option and I thought learning about it would be helpful information for me. What I found there was an amazing group of women who had endured so much and were not ready to accept that their life was near the end. This is Margo’s incredible story…
In mid-February of this year, in the office of my Pittsburgh oncologist, I heard the words I was dreading to hear: the chemotherapy regimen that was being used in an attempt to control my ovarian cancer, Carboplatin/Gemzar, was not working. Since my diagnosis of Stage IV ovarian cancer in February 2014, I had “failed” the original frontline therapy, Carboplatin/Taxotere, by very early recurrence, despite the use of Avastin. Therefore, my cancer was now considered highly drug resistant, including platin compound resistant. For this reason, there was to be no further aggressive treatment in my case, with only palliative treatment (low dose weekly Taxotere) to be used. I knew, without the doctor telling me, that this protocol was not intended in any way to be aggressive treatment for my case. I was also told that surgery was not an option either. I also knew from my own research, which he confirmed, that I would not be suitable for the regional clinical trials that now existed.
I walked out of my oncologist’s office, stunned. He had been directing the oncology team of my local rural western Pennsylvania hospital in my case, so it was unlikely that they would take a more aggressive course of action. My housemate, who had driven me to Pittsburgh for the appointment, had heard the same words I did, so there was no mistake. We both agreed that he looked pained upon telling me the news, so it clearly was something he did not want to do.
I simply was not ready to quit trying. A fighter in spirit, I had faced my diagnosis head-on last year by daily walking up to eight miles a day, gardening, and visits to local festivals and occasional kayak trips even while undergoing chemotherapy. Unfortunately, my recurrence between Thanksgiving and Christmas was heralded by blood clots, first in my left leg, and then in my lungs for which I was hospitalized for three weeks. During this time, additional chemotherapy had to be postponed, allowing the cancer to further surge ahead. Fighting my way back, I prepared myself emotionally and physically, to the best of my ability, to confront my cancer once again with the new chemotherapy regimen when it began. Despite the advanced nature of my illness and the harsh chemo regimen of the past two months, I still managed to walk and exercise diligently an hour every day, and had maintained almost normal weight. Giving up simply was not in my vocabulary, at least not quite yet.
Because my symptoms had been increasing, I anticipated the news from my Pittsburg doctor might not be good. I had already scheduled a “second opinion” appointment at Bruckner Oncology, New York City, for the next day. Bruckner has received some degree of fame for tackling many cases of advanced cancers for which patients had often been told there were no more options. They use a multi-drug chemo cocktail of up to six drugs, with dosages and the exact drugs specifically tailored for each patient. Bruckner’s chemo is given over the course of a perpetually grueling schedule, two days every two weeks, in their Bronx clinic. They believe that this multi-drug approach can overcome cancer drug resistance where it had developed previously, and that their combinations provide a drug “synergy” that can be much more effective than use of one or two drugs alone for advanced, aggressive cancers. Since they have had few clinical trials proving the efficacy of their work, they have been under some degree of criticism by conventional oncologists, who believe this approach unproven and possibly even dangerous. But, for many patients who have run out of options offered by their “conventional” doctors, Bruckner has often (although certainly not always) provided an extended time of functional living. Advanced ovarian cancer, a difficult to treat cancer with less than a 30% chance of 5-year survival rate for the Stages III and IV in which it is typically diagnosed, has become one of their specialties. While Bruckner’s approach cannot be considered curative, it may extend the life of a patient to the extent that they might be able to avail themselves of newer effective therapies as these appear.
At Bruckner, I met with one of the oncologists, who used the term “aggressive treatment” several times during the course of our conversation. I felt this term more in line with the treatment I sought, rather than the “palliative treatment” I would be offered locally. When I asked if he thought Bruckner’s treatment would help me, he paused for several seconds, and then carefully replied that it is much more likely to be successful than the one or two-drug approaches that I may receive elsewhere, a response that I knew offered no promises. Knowing I was in a dangerous situation, I liked his honesty much better than the sugar-coated palliative approach that I had been offered just the day before.
In discussing my decision with my local team, they were very understanding. They agree to be there as an emergency backup, such as if I needed to be locally hospitalized again, but will be stepping into a secondary role at this point.
In retrospect, one of my mistakes had been to implicitly trust the local oncology team, along with my Pittsburgh oncologist, and to think I needed to look no further for care that would I felt would fit my needs. I had believed they had my best interests in mind and would always treat me aggressively for as long as I wished, which proved not to be the case. Certainly, there are many more aggressive conventional therapies that I could have been offered. I had only “failed” four drugs total, not a huge number. Why are we seeing a swing towards recommendation of “palliative treatment only” for patients such as me, patients who value life – even under the duress of advanced cancer – and want to keep fighting?
Perhaps, some doctors feel they are being kind and compassionate in sparing the patient the often brutal side effects, and possible diminishing returns, of additional harsh chemotherapy treatments; I suspect that was the case of my Pittsburgh oncologist. Certainly a palliative care approach followed by hospice–for patients with comorbidities or advanced age—may be a kinder, gentler treatment plan. But does that make it the right approach for every advanced cancer patient?
I’ve also read where, in many cases, managed care has something to do with these clinical decisions as well. Many health administrators believe by freeing dollars from expensive, difficult-to-treat cases (as I might be considered), this money would be better off being used for those cases with a better prognosis than mine. Despite my Catholic upbringing, I never did aspire to martyrdom, so I will leave it to others to make their own health care choices based upon a higher moral or social compass than what I possess. As for me, I just want to live, and still make my choices accordingly.
Some of you may know me, but for those of you that don’t, I am Patsy’s daughter (aka “mini-me”) and I work as an Oncology Social Worker at a Comprehensive Cancer Center in Greensboro, North Carolina. It seems the holidays are an extra hard time for our patients and families as they cope with cancer and loss. While we sometimes forget, this can also be very hard for staff at the Cancer Center. Recently, there has been an influx of patients passing away and we recognized that the caregivers often do not have the time to process these losses. We wanted to create a time of reflection for the amazing, compassionate caregivers at our center.
One of my dear friends, Terry Moore-Painter, who serves as the chaplain at our center, always finds a way to bring depth and meaning through stories, poems, art, or just her presence. She adapted a reading from a wonderful book, ‘My Grandfather’s Blessings’ by Rachel Naomi Remen. If you have not had a chance to read this, I strongly encourage you to read this and Remen’s other book ‘Kitchen Table Wisdom’. We met with many nurses and caregivers at our center and read this together and took time to reflect on those we have lost this past year as well as to share how we each find light through our work.
I hope you enjoy the reading below as much as I did. May it bring you comfort, light, and new perspective.
A Reflection on Light
At this time of the year when the days are short and the nights are long, all of us are particularly aware of darkness. And we often equate darkness with sadness or loss, and it is in these times that we yearn for light. Many of us who care for people with cancer have experienced over time a significant amount of loss. Perhaps we, more than those in many other professions, know the feeling of loss and experience of darkness. Because of the suffering and the loss we see, we know the need for light in our lives.
Light figures prominently in all religious traditions at this time of the year. In the Christian tradition, we light candles during Advent and read about the star of Bethlehem, that great light in the night sky, leading the wise men to the Christ child. In the Jewish tradition, Hanukkah, the holiday of light is celebrated. Rachel Remen tells the story of her grandfather, a rabbi, introducing her to the meaning of Hanukkah.
On the first day of Hanukkah, our teacher showed us a Hanukkah menorah, a special candlestick with a place for 8 candles. Each day at sunset another candle is lit until there is a candle burning in each of the eight places. The Hanukkah story is the story of the Maccabees, fierce Jewish warriors, who fought long ago to defend the Jewish people. They fought until all provision had run out, even the oil for the eternal lamp that hung over the altar in the synagogue. This lamp, lit when the synagogue was consecrated, was never allowed to go out. Its burning presence meant that God’s spirit lived among the Jewish people.
Everyone believed the end was near; once the lamp went out, God would abandon the people and they would be lost. But the lamp continued to burn for eight days even without oil to feed it, and so Hanukkah, our teacher told us, is about the “miracle of light”.
My grandfather, who was a rabbi, told me that people throughout time have told stories of light in times of darkness, during the winter and the long nights and in times of sadness and loss. “Winter is a time of darkness”, he told me. “The nights start earlier and last longer. So, in the dark, people tell each other stories about light to strengthen their hope.”
My Grandfather told me about the darkness in the beginning of creation and how the world begun with the gift of light. “Now”, he said, “I will turn out the lamps and there will be darkness like there was in the beginning. We will see what it is like to receive this gift.” At the time I was afraid of the dark, and the thought of turning out the lights was not easy for me. “Will you stay right here with me in the dark, Grandpa?” I asked a little shakily. “Of course,” he replied, “I will be here and God will be too.”
We lit one candle each night for seven days and by the end of the week, the room was filled with light. It was so beautiful that my heart ached and tears filled my eyes. “It’s beautiful, Grandpa,” I told him. “Ah yes,” said my grandfather. “But God’s menorah is even more beautiful. God’s menorah is made of people, not of candles.”
Puzzled, I turned to look at him. “The story of Hanukkah says that God’s light burns in the darkness even without oil, and it is so. That is one of the miracles of light. But there is more. There is a place in everyone that can carry light. We are made this way. And we not only have the chance to carry light, it is possible for us to kindle and strengthen light in one another, passing the light along. This is the way that light will shine forever in the world.”
After many years I have found that we often discover the place in us that carries the light only after it has become dark. Sometimes it is only in the dark that we know the value of this place. But there is a place in everyone that can carry the light. This is true. My grandfather said so.
We are, Rachel Remen’s words, part of God’s menorah. Each of us who does this work has a place of light in us that enables us to care for those who are sick and pass light along to them. Sometimes we get tired or we see too many people die whom we have grown to love, and we are saddened by that loss. But we need to remember what Rachel’s grandfather says about darkness…that our colleagues(or fellow survivors, friends, etc) our families, and God are there with us in the sadness and that we always have that place in us that carries the light.
We also come to remember that our patients (or fellow survivors, friends, etc) give light to us. They show us courage and determination, hope and good humor, love, and peace even in the midst of their suffering. Today we come to remember those individuals whose lives have touched our own and to give thanks for what they teach us about life.
Terry Moore-Painter: Adaptation from My Grandfathers Blessings by Rachel Naomi Remen
I must admit I hesitated a bit before writing this post today. This is a time of joy and love and not a time of talking about sadness. As you well know, we experience different emotions and these are not always happy ones. This is especially true for cancer survivors. We may feel incredibly blessed beyond words. Hey, we are still here to celebrate yet another holiday with those we love! I never, ever take this for granted. However, these emotions are often paired with more scary ones. Will this be my last holiday with my family? I know you are thinking, “well, none of us know that, Patsy. We could all get run over by a truck!” Well, I can honestly say I have never known a single person (thankfully) that this has happened to; however, I have known too many people who died of cancer. ( I know I digress, but please don’t say this to your survivor friends).
It’s very easy for survivors to feel guilt during this time. Why am I here with my family when my friends have passed? I feel very, very sad for those that have lost their mothers and other family members due to cancer. I struggle with how to express adequately my sorrow to them.
I’ve always thought loneliness is one of the hardest emotions to feel. It’s so hard to get into the rhythm of the holiday festivities, church services, and so on, when you know you will be alone. I had a survivor recently say she had many invitations to join others at family dinners when she was initially diagnosed with cancer; however, when her cancer recurred, no one reached out. Folks, that is a powerful statement, isn’t it?
Not only do we feel the physical loneliness, but sometimes we can become what I call “socially lonely.” When you have a terminal disease, life changes. Some of us learn that talking about death, fear of the cancer returning, etc. helps us and we don’t avoid doing that. That’s a good thing. However, small talk doesn’t always come easy. Small talk can typically include talking about many of the things that survivors have lost and will never regain. Also, it is easy to get frustrated with well-meaning friends. How can they complain about having to do Christmas shopping for the kids when you will never be able to have children?
We often find we cannot do as much as we want to for our families and friends. This is very different from the usual “just say no” stuff for those that do not have cancer. I love the holiday season and always have. I am so pleased to host the holiday dinner for the wonderful friends of my kids (ok, maybe they are adults), to have friends over to celebrate my husband’s December 25th birthday and to have my family coming from out-of-town. I will have minimal responsibility for these exciting happenings and no one will expects me to do too much. I know it’s all about being together. So, why do I constantly have to remind myself that I really need to get back to cherishing my energy and saving it?
So, what can we do to get the most out of this wonderful season of joy? First of all, we can let our families and friends know how very much we love them and how much their support has meant to us. Let me be specific about this. In particular, let’s tell those that have been ok with talking about the issues I described above what a gift that has been. Next, we can do something that is very hard. We can let others know what we need in this stressful time. And, we can remind ourselves of that and use our energy for this purpose. To be honest, I think being with us is what we can best give to those we love. Remember, haven’t they also probably asked that hard question about how many more holidays we will have with them?
I am so thankful to all of you for the gift of knowing you and learning from you. My heart is full of gratitude and joy of being allowed to share my thoughts about the emotions I experience with you. What an honor that has been for me this year. My wish for you is that your holiday is full of the emotions of joy, happiness, and much love…
Today I have the pleasure of introducing you to Heather, a very special friend of mine. Heather has been through so much and because she is such an inspiration I have asked her to share what support from other survivors has meant to her.
I was diagnosed with a very rare type of ovarian cancer when I was 27 years old. A visit to my Ob/Gyn showed a small cyst on my right ovary. After checking once a month for 3 months and because it was still slowly growing we decided to remove my right ovary with outpatient surgery. During surgery it was found to be ovarian cancer. When I woke up, I knew I wasn’t going home that day.
I didn’t actively begin connecting with the community of survivors until 2012, over 10 years later, but I did reach out through the health and wellness program offered at my cancer center, specifically survivor counseling. I remember meeting the social worker at my first visit 13 years ago. She helped me deal with the reality of being diagnosed with cancer and was especially helpful during chemo visits later in my journey. In the first few years, I never considered myself as a cancer survivor. Having a rare type of ovarian cancer, I felt that excluded me from the others. Granulosa Cell type was the “good” kind to have, so I was told. It is usually slow growing and doesn’t recur too soon, possibly a 20+ years recurrence rate. And, surgery can remove it, as long as it doesn’t invade a major organ, which it typically doesn’t. Cancer is still cancer and I was yearning to feel “understood” and “normal”. Yet, I was a very busy wife and mother and lived over an hour away from my treatment center.
My husband would have to beg me to so see the social worker. I just couldn’t wrap my mind around being a cancer survivor, a mother of a very active little boy, a wife, the family manager of bills, finances, schedules and our son’s education. Usually, I talked to the social worker before appointments and surgeries. Another way I connected with other survivors was by just talking to them when I was getting chemo. If it felt right, it was easy to connect since we were both there and held captive for several hours. Some of my closest friendships began in the infusion room, including nurses! A few years ago, I joined the ovarian support group called the Teal Magnolias. Immersing myself in the ovarian cancer community in my own special way has given me a sense of ownership. I am comfortable connecting in small groups and one on one, and because of this, I feel I am making a difference in my life and the lives of others.
Just a few weeks ago, I returned from a first-for-me survivors beach trip. It was a “gifted” trip, as all of us needed to get away, but many of us didn’t have a way to make it happen. I was thrilled when I heard from Patsy that she found a place and had already started putting the details for the trip in motion. She orchestrated a beautiful getaway and I felt like a princess in every way possible. She cared for, spoiled and pampered us down to every precious detail.
I have to admit, I was a little nervous, at first, not knowing who would be coming, but I was more comfortable knowing at least two ladies and that made a huge difference for me. We could plan to come and go as we wished and had so much space to move around the house that taking a nap or just sitting out in the porch rocking chair provided any solitude needed after a busy day by the ocean. The timing of this trip was perfect for me. Even a few months ago, I would not have had the energy to even pack, travel and enjoy such a huge gift.
On our last evening, we all took a short walk out to our beach. Patsy had already asked each of us to take our fears, our worries and concerns and write each word on a seashell, later to be tossed out to sea. We also wrote on individual shells the names of survivors who were not able to be there with us and going through challenges and struggles. The soft orange-gray sky and the sound of the waves lapping the shore remain in my mind and I will never forget this special time together.
We thrived together on this trip, we didn’t just survive.
(link to the video is http://vimeo.com/108957312)
Let me begin this post by saying that this is an issue I know a bit about. As a 2 x advanced ovarian cancer survivor, a carrier of the Breast Cancer Antigen gene (BRCA2) and mother of a previvor (survivor of a predispositon to cancer due to being a BRCA carrier), I could play on several teams if cancer were a sport. In addition, I have a list of ongoing diseases, including mast cell and celiac. Each has its own ribbon and finding a cure for each is certainly something I’d like to see happen.
So, let me just get put it out there and say it…SPENDING TIME WHINING ABOUT OTHER CANCERS IS A WASTE OF ENERGY.
I must confess this has been a long road of learning for me and continues to be. When I was first diagnosed in 2006, I often asked myself ” Does anybody even care about this terminal cancer I have?” It’s still hard for me at times. And no, I will not start supporting efforts of those organizations that do not include survivors that have metastatic disease. There is so much more I can say about why this occurs and, believe me, I am really holding back. There are many VERY understandable reasons. Much more complicated when you live in the “cancer world” than just looking in from the outside. It’s not merely about team spirit, folks.
However, it’s just plain not in our best interest. We need to be asking ourselves, as cancer survivors, what the impact is of what we do. Are we promoting colors or really assuring our message gets out? I attend many conferences and the theme I hear from doctors and researchers is clearly that cancer treatment stretches across lines. For example, there are treatments in urinary cancer that have shown promise for those with ovarian cancer. If we want to stay ahead of these cancers on research, we need to get out of our boxes.
Seems to me we survivors need to be asking ourselves some important questions. Am I involved with the cancer organizations that advocate for a cure or just complaining about what’s not happening? Do I even know what efforts are being done? Am I spending my energy and time promoting these efforts or complaining about things? Am I duplicating efforts when I could be joining forces and learning from others?
And, yes, I will probably continue to cringe when I see the commercialization of pink this month. And I will remind myself of wise people, like Frieda, who has used her voice in a positive way to make a difference and reach across the lines.
But, I pledge to work hard to fight this beast and use my energy to address what can be done, not what I dislike about what is being done. I feel quite certain after writing this controversial post you’ll hold me accountable 🙂
Want to join me??
Greetings to you all! I hope you had a wonderful summer filled with peace, fun and whatever fills your soul. I could describe my summer in many ways. It has been filled with trips and fun, but I think in reflecting back on it I am proudest to say it was the summer I needed and strived hard to accomplish. Yes, it has been too long since I have posted. I have been so touched by those of you that have inquired as to how I am doing. Thank you for caring. I am continuing to do well. I am so honored that you continue to choose to spend time reading my blog. I was recently informed that my blog was selected as one of the best cancer blogs. I was, to say the least, surprised and very honored. Go to blog.delimmune.com to check out the blogs selected.
We have had a busy month with events since this is “our cancer” month. Fortunately, we have had lots of success, especially with getting our message out. We recently held our annual Teal Tea Party and Stiletto Sprint. I am so proud of the volunteers involved in both these events because they chose to represent the real side of cancer, not just the “rah-rah side.” I hear too many survivors with metastatic cancer say they are not welcomed to participate at some events because they do not represent the “cured” crowd. In my opinion, this is so sad and so wrong on so many levels. This year I had the privilege of being on the Z team at the sprint. This team was established by my friend, Phyllis. Phyllis was asked to represent survivors in a TV interview and the day of the interview she was informed by her doctor that he recommended she enter hospice, as there was no more treatment available to try. Phyllis, in her usual spunky style, insisted that the interview carry on. The day of the event she kicked the sprint off in her wheelchair and the announcer shared her story.
This month I have lost too many friends. Funerals have become way too often something I attend. For me, this true message at events represents the true support that cancer survivors need. Not “just have a positive attitude, “you can fight this” , “be strong for those that love you” kinda crap. The affirmation that survivors need and deserve is for others to know the reality of the disease and to open their wallets to give $$ to cure it. I’m proud to be a part of a community that did both of these for me and others….thank you, supporters.