“And may you roam where roads are free
And rest where nights are fair.
Then wait a little while for me
Till I shall join you there.” JCH
This has been one of the hardest blogs I’ve done. This blog has taken me longer than any before. This blog isn’t about travel or a beautiful trip I’ve just been on. It’s about a photo project I’ve been working on. It’s about miracles and heaven and breast cancer culture and history. It’s about Beauty and the Dark.
As I sit here typing I’m listening to the pandora classical station and one of my favorite pieces by Paul Carrell comes on. It’s called Life and Death. In 1973 when Paul was born he suffered from a congenital heart defect and was given only days to live as a baby. He lived. I believe some coincidences are more signs than anything else. To me, there are signs everywhere. I’m so thankful I can see them.
As I posted in my last entry, my most recent brain scan was considered ‘clean’. I remember how I felt that day, the disbelief, the joy, the renewed optimism. I found out a few days later that it actually wasn’t ‘clean’. There is something up there but it’s too small to treat. This is a glimpse into my journal of that week:
10/4 – clean brain scan! miracle?
10/5 – day after clean brain scan. holy shit.
10/7 – the scan isn’t clean. fml.
I understand that I will be in treatment for the rest of my life. I understand I will live my life in 2 month increments. A fellow cancerful friend refers to the time in between scans as ‘gulps’. Sometimes my two months consist of gamma knife surgeries which leaves me with about a month of feeling like a human but actually like two weeks because then I stress for two weeks about my upcoming scan. I haven’t had two months ‘off’ yet except for this time. Although it doesn’t really feel like time off. This news has made me feel consistently sad and discouraged. To be completely honest it’s a real mind F%@K actually. Yes it’s clean, no it’s not, well maybe it sort of is…I guess I’ll find out on December 8th.
Life is not permanent. My life is definitely impermanent. I accept this. I know that there’s little chance of a ‘miracle’ or a cure in my lifetime. I choose to live my life the best way I can now. I wish I had done this before. Sigh…how different life would’ve been. I choose to try and make this whole cancerful situation mean something, to me and others. I am not afraid of my impermanence.
The photo project I have mentioned has successfully begun. This last week Part One was completed. I’ve decided, with a little help from my friends, that I’m titling it, Beauty and The Dark, Cancer: My Photo Memoir. This project is going to be one of the most meaningful and significant things I’ve ever been part of and that makes me proud. It’s a project representing the different sides of my cancerful life and the different sides of cancer in general. It represents my story and many others.
I’ve wanted to do this since I was diagnosed and introduced to ‘The SCAR Project’ by David Jay. This book and documentary completely changed the way I viewed breast cancer and ultimately myself. I’m so grateful for these rare glimpses into the reality of this disease. Forbes magazine describes The SCAR Project as a “shockingly raw, yet strikingly beautiful, photo series that shows a side of breast cancer we’re not used to seeing: the reality.” I don’t believe we see enough of the ‘real’ side of cancer. I want people to see it, to see how dark and light it can be. It will be three parts and the first one represents the title in its entirety. The photos below are by David Jay.
My photographer, Liesl Clark of Liesl Clark Photography (www.lieslclarkphotography.com), has been in my life for over 5 years and has become a dear friend. We have worked together before and this will be our third project, the most important one by far. She is so beautiful down to the very roots of her being. As grateful as she says she is for me and being involved with this project, I feel exactly the same way. I would never do this project with anyone else. I’m honored that she’ll be with me for these moments.
The location for this part is saturated with incredible history. A 513-acre park is set on the eastern slope of Rattlesnake Mountain in Chesterfield, NH. It’s called the Madame Sherri Forest. The forest is named after a former owner, Madame Antoinette Sherri, originally Antoinette De Lilas. She was born in Paris in the early 1900s and eventually made her way to New York City. There, she created a life and a name for herself. She and her husband built a French-inspired chateau summer house here in NH. In the 1920s it was here that they lavishly entertained their New York City friends.
Madame Sheri’s life was filled with fame, wealth, mystery and tragedy. She was described as exotic and unique. She furnished her NH home with extravagant items she bought during her travels around the world. There were a lot of rumors that filled the local towns about this Madame. With so many beautiful women always at her chateau, some believed she ran a brothel. There’s a well known story about her driving around town in her fur coat with nothing on underneath. I wish I could have known her.
In time, Madame Sherri’s fortunes declined, and her castle fell to ruin and vandalism. She returned to the house in 1959 to find it in such state. She left, heartbroken, never to return again. The house ultimately burned down completely in 1963. There have been a few people who claim to have witnessed Madame Sherri walking down her grand staircase and hearing laughter and music. Her mantra was known to be “Only the best”.
The main staircase, now called, “the stairway to heaven,” was cut into the side of a rock ledge. The stairway still exists and stands out amongst the other ruins that surround it. It almost takes your breath away when you walk up to it. It towers up and just over the top of it, is a break in the trees. The light shines down on it just like a stairway to heaven. Below the staircase, are pockets of crumbled ruins and darkness and graffiti. I couldn’t have dreamt up a better location, filled with significance and stories and a connection to my own life.
I have a desire to make something beautiful come from a sometimes very ugly and dark reality. It’s been a struggle to accept my new self as beautiful. I want to document all the emotions I’ve had regarding my illness and representing them through photo has been a goal since the beginning. My need to do this now has been growing since the disease spread to my brain. I want to capture the present, my present. I want to capture beauty and the dark. I want to do this project so that I can look back, so my family and friends can look back.
I wanted to hold onto this moment of my illness. I wanted to maybe even provide some inspiration to others that may be in similar situations in life. It’s incredibly difficult to pull myself up to the light some days. I’m sure this is the same for so many people, even without cancer. I like looking at the photos and thinking about how my illness has not taken my soul from me. I haven’t allowed that. I feel that when some people think of terminal disease they don’t picture someone like me or many of my cancerful friends who actually don’t look cancerful at all. I feel like I want to remind people that terminal doesn’t always look terminal and that you never know what’s underneath someone’s surface.
The few people I have shown some of these photos to have had wonderful feedback. It validates this project for me. I feel understood and seen by the people closest to me. Liesl captured the very essence of me in these photos, the light and the dark. I’m proud of myself and this project. It’s about my journey and adventure with my cancer. It’s about my dark fairytale. It’s about capturing the process of my own self discovery through the chaos. It’s about remembering who I am and being true to myself. It’s about honoring others and remembering that there is beauty in the dark.
Below are the photos taken by Liesl Clark.
While I was researching content for this blog I wanted to learn more about heaven, how it has been described and documented over time. After doing a photoshoot on the ‘stairway to heaven’ I better understand it a little! I also wanted to learn more because I genuinely believe in such a place. I don’t want to be scared by what lies ahead. I want to understand what may lie ahead. I found that often heaven is described as a higher place, the holiest of places, a paradise. Regardless of my belief in an actual God, or whether I just have faith in something more, heaven is there for me.
One way I educated myself was from documented near death experiences (NDE), recent and past. Many people who have opened up report meeting relatives in a dreamy, mystical, otherworldly dimension. These stories are of places with big puffy clouds and brilliant rays of light, green landscapes and butterflies and the most beautiful music one will ever hear. The most consistent and similar descriptions of heaven include, “at the center of it lies love, peace and joy, beyond human comprehension.” The following passage is from the Bible.
“A river, clear as crystal, will flow from the throne of God and of the Lamb [Jesus] down the middle of the city. On each side of the river there will be a tree of life, yielding twelve kinds of fruit every month. The streets will be pure gold, like transparent glass. The walls of the city will be adorned with every kind of jewel, emerald, onyx, amethyst, topaz, etc. There will be no need for a sun or moon, and no need for a temple or church. The presence of the Lord will be its light.”
I was recently given a book called Proof of Heaven, written by Dr. Eben Alexander. A neurosurgeon, Dr. Alexander had a near-death experience (NDE) while suffering from a very rare illness. He lay in a coma for seven days and states that during that time he met and spoke with the Divine source of the universe itself. He also describes being guided through the transition by an angelic being. His doctors describe his recovery as a medical miracle.
Before Dr. Alexander underwent this journey to the beyond, he couldn’t argue scientifically that Heaven exists. Despite the number of documented NDE’s and medical miracles, scientists have argued that they’re impossible. This is the age old debate between science and philosophy. Are these just fantasies that our brains are producing? Are they just a result of extreme bodily stress? Dr. Alexander now believes,
“Love is without a doubt, the basis of everything…this is the reality of realities, the incomprehensibly glorious truth of truths that lives and breathes at the core of everything that exists or that ever will exist.”
In Dr. Alexander’s follow up to Proof of Heaven, he wrote The Map of Heaven. He starts the book by discussing Plato and Aristotle. He describes Plato as being the father of philosophy and religion and Aristotle the father of science. Throughout the book he describes how various religions and belief systems view the afterlife and the idea of Heaven. This is fascinating to me. He includes the story of Socrates’s death, Plato’s master. Plato describes how his master’s life came to an end in a heroic and tranquil way. Dr. Alexander states that, “Socrates’s supreme nonchalance in the face of death was the result of knowledge of what death really was: not an ending but a return to our truest home.”
In both of his books Dr. Alexander talks about his travels through a dark and murky place before he ‘arrived’. He feels that souls that are not open and ready to the idea of their death and the beyond are sometimes stuck in this place until they are ready. He says that, “We end up, in the end, where we belong, and we are led by the amount of love we have in us, for love is the essence of heaven. It is what it is made of.” I believe this with all my heart, always have. I also believe that this life, this ‘realm’ is for learning the lessons of love, compassion, forgiveness and acceptance.
Dr. Eben Alexander is referred to as a medical miracle. So are many others throughout history. A 14 year old teenager from South Carolina lived without her heart for 118 days. A 10 year old boy suffered internal decapitation in an automobile accident and he lived. What about the girl that doesn’t age or the 8 year old girl that feels no pain? What is a miracle? How is it viewed by people that are lucky enough to be close to one? How do we judge if a miracle is a miracle?
By definition a miracle is a “surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.” Whether the subject of a ‘miracle’ has survived a terminal illness or escaped a life-threatening situation, who are any one us to say to that person “that wasn’t a miracle”? Like Heaven, Miracles are dismissed by many scientific thinkers for being physically impossible. I’m not on that side.
Along with Dr. Alexander’s books I was recently told to watch the movie Miracles from Heaven. This movie is based on the true story of Annabel Beam, a 10 year old girl who had a rare and incurable disease. She also had a near death experience when she fell down into the center of a tree. It was after this accident that she was cured. In 2015, Annabel said this about her accident, “I believe that I was cured because when I went to heaven, I asked Jesus if I could stay with him and he said, No Annabel, I have plans for you on Earth that you cannot fulfill in heaven. Whenever I send you back, there will be nothing wrong with you.”
During the movie Annabel had the opportunity to view a painting by Monet, Reflections of Clouds on the Water-Lily Pond. She is captivated by this piece and the similarities to what she saw during her NDE. For some reason, this part turned up some serious emotions in my heart and I cried and cried. A founder of French Impressionist painting, Monet painted the Water Lily series at his home in France. Many of the works were painted while he suffered from cataracts.
Are Heaven and Miracles connected? Do they need to be? I believe in miracles, no matter how small or large. I believe miracles aren’t always seen but they’re happening. I believe most anything is possible. I do not believe there will be a cure for metastatic breast cancer in my lifetime. When there is, this will be a miracle. C.S. Lewis says, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”
Before bringing this entry to an end, I want to talk a little about metastatic breast cancer. Breast cancer awareness month has just finished and I say that with a little relief. I don’t like this month to pass by without recognizing it and taking the opportunity to thank my family and friends for their unending love and support. I also like to talk a little about the statistics we don’t hear about and the history we don’t know about.
90% of deaths from breast cancer are due to metastases which account for 40,000 deaths annually. 10% of metastases occur in the brain. The majority of patients with brain metastases have already had a spread to their bones, liver or lungs. Not me though, I’m skipping all those parts! After lung cancer, breast cancer causes more deaths in women than any other type of cancer. Almost 100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it.
These are the dark realities of breast cancer. Underneath these discouraging statistics lie the controversy over allocation of research funding. 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die. I am one of those numbers. The ‘popular’ fundraising movements only give on average 2% of their research funds to actually researching metastasis. Only 2%!? This is shameful, when so many will lose their lives to this disease.
These ‘popular’ organizations focus on prevention, which does nothing to help those of us already diagnosed. I support groups like METAvivor, whose goal is for cancer organizations to devote 30% of research budgets to breast cancer metastasis. Someone dies from breast cancer every 14 minutes in the US. Unfortunately, this number has not decreased significantly in nearly 40 years, despite a huge movement to raise awareness and funds. Many of us know all too closely that research specifically focusing on metastasis is critical to significantly reduce the breast cancer death rate.
Maybe this is why I feel so passionately about breast cancer research and organizations that actually get it right. Maybe this is why I feel so separate from the pink ribbon frenzies. Through the documentary Pink Ribbons Inc., I learned that a 68 year old woman named Charlotte Haley created the ribbon. It wasn’t pink. It was peach in color. She began this project in her dining room and with each pack of five ribbons she attached a postcard that read, “The National Cancer Institute’s annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up legislators and America by wearing this ribbon.”
Don’t misunderstand, I do have the ability to appreciate and respect certain organizations and fundraisers and tributes. Even the pink apparel being worn in the NFL. Any help is help and kindness is kindness regardless of the disappointing facts about metastatic breast cancer research funding. I think about Charlotte and her life and what her intentions were and how genuine they were. This is what I connect to.
I am so deeply affected by this controversy. At the rate I’m going these are my statistics:
6 brain MRIs per year
4 CTs of my chest, abdomen and pelvis
4 bone scans
2 liver MRIs
Craniotomy and gamma knife surgeries when needed
Appointments every 2 months with these doctors: Radiation oncologist, Neuro oncologist, Breast oncologist
$12,000 on average a year in medical expenses
I write about this side of cancer and my experience because maybe it will make a difference someday, even just to a few people. I write this to shed some light on the reality of health care, the costs and the emotional toll of cancer. Even though I may not be working anymore, I still want to feel worth, like I’m doing something good. And the super cool part is that this something is actually really good for me. It gives me motivation and purpose.
I hope you enjoyed this post and the first part of my cancer through photos project. I’ll talk to you soon. All my love…Angela
“Every moment of light and dark is a miracle.” Walt Whitman