life reveals her mystery;
to live is a gift, to feel is a blessing,
and to take part in her beauty
is a miracle renewed each day."
It was Thoreau who said, "Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each." I have to keep reminding myself not to rush and not to push too hard. I don't know why I can't stop. Just stop. Stop to breathe the air and drink the drink. Stop long enough to savor the moment. Instead I run and run and run myself in circles. At times I wonder if I am running from cancer or even from myself.
Some days I awake feeling invigorated and unstoppable. Other days it is difficult to find joy and purpose. I'm in this weird limbo where I don't feel like I connect with the people around me and cancer is somehow that divisive element. In my haste to "live" each day to the fullest, I somehow find myself avoiding it with a chaotic schedule when possible.
I just want to find that place of peace where I embrace the day and feel the joy in the simple beauty of the miracle of life. I don't expect orchestral background music and fade-to-black each evening. I just want simplicity. Peacefulness. Joy. Perhaps I'm seeking a new reality.
“Patients who have good relationships with their doctors tend to be more satisfied with their care -- and have better results” (from Yahoo Health).
I have been spoiled by oncologists. Of all the people I would have loved to be spoiled by before having breast cancer, they were no where on the radar. I think they may have been outranked by famous rock stars and hall of fame athletes, but I digress. Oncologists know how to respond quickly. If an oncologist can’t respond quickly, they have people that respond for them. If there is an issue, it gets taken care of immediately.
“It feels like it may be infected.”
“Can you come in today?”
“I’m having pain.”
“I’ll call in a prescription right away. Which pharmacy would you prefer?”
“There is tremendous swelling and pressure.”
“The Doctor lives close by; he said he will come in just to see you. What time can you be here?”
It happens that quickly. That was my experience with my medical oncologist, my surgical oncologist, and the oncology-reconstruction team. For goodness sake, it’s cancer. A whole host of things can happen and the faster you get to it, the better.
Now that I’m considered “all tests indicate cancer free at this time," I have lost rank. No more special treatment. No quick response without a new referral. I understand, there are people with more pressing situations and issues. I have been pushed back to my primary care physician who has a huge patient load and is basically, only available for annual physicals booked well in advance. All I need is a referral to have some nagging symptoms tested and I have to wait three months to see the doctor or three weeks to see the nurse practitioner. The responsiveness warms my heart.
Not to worry. Should I have, oh I don’t know, renal failure in the meantime, urgent care is available. You know, that place you can go where your file does not exist, no one has any idea of your history, and by the time you provide your history and the intern attending to you has had the time to research the implications, you have gone into toxic shock? Pardon the drama. I’m sure it isn’t as bad as all that. This is the first time I have had unusual symptoms since being treated for cancer. I just want peace of mind. Apparently, that isn’t covered under my HMO, not even with a co-pay.
As you can tell, the Relay for Life was a great event. As I run into people who were part of the event, we get all giddy and start with,"Remember when ...." And there are knicknames and inside jokes that have now become part of the fabric of our friendship. It is both beautiful and ironic how we have bonded over cancer.
Speaking of bonding, for those of you that have not been within verbal earshot, I feel the need to immortalize within the pages of this blog, the highlight of seeing my favorite surgeon at the Relay. If I have already told you this story personally, then by all means skip this post.
Before I start this story, I want to add that I never thought I would have a "favorite surgeon", let alone "a" surgeon. Throughout this process I have had five. My favorite one performed three separate surgical procedures (lumpectomy, sentinel node biopsy & catheter insertion, catheter removal). Then there were four that worked on my bilateral mastectomy with immediate reconstruction: two that worked together on the mastectomies (chief of staff and his chief resident) and two that worked on part one of the reconstruction (chief of staff and his chief resident). They have all been highly qualified and performed excellently. My favorite surgeon was much more significant on the overall journey as he was the one I started with and he is the one who gave me such great guidance along the way including the procedures he wouldn't be performing.
I had this weird premonition that I might see him and, at one point, as I looked up at the people walking the track, there he was. He gave me a big hug and seemed really pleased to see me (Or was that a reflection of my joy to see him?). I got the chance to talk with him for minute each lap and again when he returned the next morning. He had a big smile each time he saw me that was reassuring. A smile that somehow said, "Look at you - you made it." Even though I know I am here and all results to date have been positive, to see it in his eyes was significant for me.
After I last saw this surgeon last November, he told me to keep in touch and let him know how everything turned out with the pending mastectomy and pathology. When I received a copy of the pathology report, I sent him a copy with a personal note expressing my gratitude. You know, a sappy note basically stating I would name my children after him if I could have children and that I have a classic case of infatuation and much sadness that I don't have any legitimate reason to see him again. He responded with a very nice note that melted me like a snowman in Southern California. What can I say, I feel pretty lucky that he was part of my team. He will likely always melt me.
I first saw Joe as I was entering the stadium. He was wearing a shirt that was a tribute to someone who had recently passed away. During the lunch break, he sat down next to us and we started to joke and laugh. It was one of those natural conversations where it seemed like we were old friends. Someone asked what brought him here or what team he was with and he said that he and his family were here because his son passed away two months ago. While we continued to talk to him and get to know him better throughout the event, I was most impressed by his determination and commitment to both his son and the event. Not only was he on the track the majority of the day, but he walked all night as well. He must have walked well over 40 miles. Every time I talked to him, I grew to love his son, Josh, more and more. Josh was only 13 years old. He was diagnosed with bone cancer last October and he passed away in March. Most children would be lucky if they were loved half as much by their fathers.
During the opening ceremonies I found myself walking next to a dad pushing his young daughter in a stroller. Her name was Shelby and she was six years old. She had the most beautiful big brown eyes and golden brown hair pulled back in a long ponytail. I talked to her father at length in our booth while I made Shelby a purple bracelet – her favorite color. She has only been out of the hospital a couple of months after having brain surgery to remove a benign brain tumor that required the removal of 25% of her cerebellum. She has some motor skill issues that require rehab right now. They were such a sweet family, but I was most taken by the gentleness in which he spoke to her. He didn’t treat her like a sick child and he didn’t baby her. He treated her with the same kindness and love as his other children. They were a beautiful family with beautiful smiles.
Another little girl came into our booth to make a bracelet. She looked about three years old. Her hair was just growing back. She had the sweetest dimples and smile, but her eyes looked wise beyond their years. I didn’t hear her story, but I didn’t need to. I saw enough to know that I should hug her and show her love and keep her in my prayers.
During the luminaria ceremony that evening, the lights were dimmed and paper luminaries lined the track. Each of the luminaries was decorated in memory or in honor of someone. All the participants were invited to walk as a bagpiper playing “Amazing Grace” led the way. As I walked the track it was shocking, sad, touching, moving, and very emotional to see that my co-workers and family members had several bags made in my honor. It was one of those moments that made me realize that the last ten months were indeed reality, and that yes, I too am living with cancer. I walked several laps in the dark with tears streaming down my face. Sad tears and happy tears. It was a cathartic experience.
I could list so many more stories of people who touched me this weekend, but I fear that it would depress someone or scare someone away from a Relay event. That wasn’t the feeling at all. This was a celebration of life in every way. This was an event that spread hope and built community among people with similar experiences. This was 24 hours I won’t soon forget.
Dozens of people of all ages in purple t-shirts (the color signifying all cancer survivors) waited patiently for the okay to move forward and begin the 24-hour relay. The event participants gathered around the edge of the track and applauded as we walked by. I was so uncomfortable. Why the applause? What did I do that anyone else wouldn’t have done? It still escapes me, yet I think if the roles were reversed, I’d be clapping the loudest.
I don’t know why I have trouble identifying with survivors. I had the same experience at the Race for the Cure. When I think of the word survivor, I think of examples such as, “she survived Auschwitz” or “he survived three tours of duty in the Middle East” or “the nation survived eight years under the leadership of (insert the name of your least favorite two-term president).” I have the image that survivor implies finality in relation to whatever one has outlasted. This is where I have difficulty. Have I outlasted it? Will there ever been finality in a positive sense? My struggle to embrace living with cancer conflicts with my struggle to embrace survivorship. Somehow I feel I am still on the island waiting for tribal council, not yet declared a survivor . . . no cash prize, no endorsement deal.
Two survivor laps later, the 24-hour relay was off to an enthusiastic start, even if my conflicting emotions were still surfacing.
As you can tell, I also have a new look to this site. Thanks to Catherine at Blog Togs for her design skills and creativity. She captured my feelings and mindset perfectly!
More later . . . after I've rested!
I haven't mentioned the reconstruction process in quite a while. I completed the expansion process in late March filling them to 610 cc's. While I am still most comfortable wearing the prosthesis to fill out my clothing, I have reached capacity. I have been in a "resting" period these last two months adapting to the expansion prior to placement of the permanent implants. I think the permanent implants will look and feel somewhat different and for this I am grateful. I am not so pleased with the feel or the placement of the expanders.
I see my doctor on June 13th to check things out and schedule surgery. I am looking forward to crossing this milestone off my list and moving on. I'm tired of my "breasts" and all things related. First it was the surgery, then it was finding the prosthesis (and insurance hassles), then it was the biweekly expansions, and next surgery. Don't get me wrong, I am glad I am having reconstruction. It is amazing how much more you notice your stomach when there are no breasts obscuring your view. Surprising to me, the social and psychological aspects have been more trying at times than I anticipated.
The other day I was pulled over by a police officer for not securing my seat belt. I was only traveling less than a mile down the road on a residential street and opted not to wear it for comfort sake. Before I get the safety lectures, I understand the potential repercussions of this act. I opt to trade the risks to avoid the pain of the seatbelt against my breast bone. That area has been sensitive since surgery and during the expansions. Just to keep your mind at ease, I do wear my seatbelt for longer trips and anything involving a freeway. And did I mention I was pulled over in the City that is also my employer and the whole thing occurred in front of the police station which is also across the street from the university where I am an adjunct professor? The officer was doing his job and I don't begrudge him his duty to pull me over for a citation. While I would have rather gotten the ticket and moved on sheepishly, I tried to answer his question, "Why aren't you wearing a seatbelt?" Of course in my embarrassment a tear or two escaped.
By the time I got to the office I was more embarrassed. I was joking with a co-worker that I did a total "chick thing" when I got pulled over. His reply was, "Did you show him cleavage?" To which I turned away, went back to my office and cried. It didn't end there. Later in the afternoon we were celebrating a co-worker's birthday with a chocolate cake. One of the guys turns to me and says, "Got milk?" imitating the numerous milk commercials seen in print and on television over the past few years. Of course, in my now identifiable hormonal state, I replied with an emphatic "No," as a tear silently fell down my cheek.
I realized I have started thinking about the perception and social importance of breasts since Rae wrote about her insurance woes as she faces ovarian cancer treatment. Is it strange that legislation that states 100% of breast cancer care and reconstruction costs (including protecting symmetry) are to be covered by insurance, yet Rae's insurance increases exponentially due to multiple claims involving her ovarian cancer care. I started to wonder if this legislation was passed by a congress dominated by men because of the social and sexual status of breasts. The justification for this legislation was the psychological trauma and physical deformities experienced by so many women who experienced mastectomies (unilateral or bilateral) and the impact on quality of life. Can't the same be said about ovaries? Or is it that they aren't physically seen and adored, and, therefore, not as important since they don't require reconstruction?
Maybe I am reading too much into it and perhaps I have misinterpreted the legislation. Either way, the emphasis on breasts is astonishing. Am I getting on a soapbox because I don't have them any longer? Maybe or maybe not. I may be more aware because of the focus I have had to place on my breasts this last year. I would be lying if I said I didn't miss my breasts and the natural, comfortable feeling that natural breasts have. However, the breasts weren't more important than getting rid of the cancer and reducing my risks for future recurrences. In my head, I am just trying to find a balance. I certainly won't find it in the media or in public perception. I don't criticize anyone's personal preferences. Who can explain the reason for attraction to any thing/part/person? I just wonder why breasts have become an alter at which many worship. Why does an increase in size relate to an increase in status and/or beauty?
Most days, dealing with breast cancer and reconstruction are very clinical for me. I have my reflective and deep moments, but I don't often have lots of drama and trauma over the mental aspect. Part of my current reflections can be attributed to a hormonal surge that have sent my emotions and moods swirling into space, exploding, and showering me like the sparks off a bottle rocket. Like my quest before cancer, I am just searching for peace of mind and peace of heart. These days, it just takes a little digging in different directions. Y
I am not in this event alone. A few months ago, I approached the city manager where I work about putting together an official team. He was very supportive and even pledged our first donation. I knew there was a small core of people who were committed to this event. I wasn't sure there would be enough support to make a good showing. My organization is made up of very generous people that are already committed to supporting other very worthy causes. Was there room for one more?
The people I work with are amazing. The response was overwhelming. Our team has 40 participants and to date we have raised over $6,000 (and counting). As I bundled up our donations and registration forms to submit for the event, I also had to sort through the donations for the luminarias. These are paper lanterns that are lit in the evening in a special ceremony. People can purchase luminarias in memory of someone or in honor of someone. As I sorted through the forms and donations, my eyes filled with tears as I opened forms with luminarias purchased in my honor. I never did this to bring attention to my cancer, I did this to do something positive for cancer treatment and research. I have said it before, I work with amazing people who have generous hearts. I will always defend these people when they are labeled "government workers" (as though it is a bad thing!). I work with people who are committed to serving the community in many ways. Their actions prove it time and time again.
I don't think it would be difficult to raise awareness and funds for cancer if people took the time to read some very poignant blogs to which I have become addicted. I never did attend any support groups, even though I know how beneficial some people find them. Perhaps I have that type of forum here in the blog world. When I read the stories of Louise, Rae, Cancer Baby, and others I do find a kinship. These women are very eloquent and are able to articulate what I feel, but cannot say. While they have dealt with ovarian cancer, the experiences and repercussions are similar. These are courageous women I walk with in spirit and hold in my prayers. Read their stories and you'll understand why my commitment to events like Relay for Life and Race for the Cure are so important to me. No one should have to face this journey, especially not as young as these women. I respect them so much for sharing their lives and keeping it real in print.
The other day I started to list the people in whose honor I will walk at the Relay for Life. Unfortunately, once I start to shake that family tree, the cancer nuts shake out in bushels. Frankly, I don't think I have the stamina to walk individual laps for everyone. It is disheartening to see the ages get younger and younger with each generation, but there is also hope in seeing the number of us that are survivors.
So to sum up this long and rambling post, I am excitedly anticipating Relay this weekend. I look forward to joining my co-workers and hundreds of people who wish to bring joy and hope to a world of pain and sorrow and despair. I know this makes a difference. I know this brings light to the world. I know that one day we will win this war . . . one battle at a time.
Our booth will be offering three things. First, we are providing ribbons that people can personalize and wear in memory of or in honor of someone they know who has or is battling cancer. Also, we are participating in the “Picture a Cure” program where we solicit letters and attach pictures from people whose lives have been touched by cancer. These letters are provided to our political leaders because it provides a face to the disease. It helps us personalize the requests for additional funding for research and treatment. And finally, as part of our fundraiser, we will “Craft for a Cure.” We will be inviting people to come and make a bracelet for people they know or in honor of people they know using beads of the colors that symbolize the various cancers (i.e. pink for breast cancer). Hopefully we will be able to make a few additional bucks in addition to all the donations we have currently raised. I’m very proud of the response of my fellow employees. There is a dedicated core group of about five or six of us that will be staying the entire 24 hours and many, many more that will be coming and walking for an hour or more each. I work with an amazing group of people and this is only one way they show it.
One thing I love about this event is that it is a celebration. It celebrates so much: the lives of people living with cancer, the incredible job that caretakers do, and hope for the future. We learn new things everyday in regard to treatment and quality of life as we inch toward a cure for many forms of cancer. It is an amazing, inspiring, uplifting, and most importantly, fun event! If you would like more information about this event and would like to make a contribution, please email me. There is always room for one more!
I have decided that I am dedicating each lap I walk to someone. First and foremost, I am walking in memory of my Unlce Alfonso, my friend Steve Kelley, my co-worker Gary Schelin, and my friend Harrison Sanborn. Next I am walking one lap in honor of all the survivors I know, including my sisters Joanne and Jan. Next I am walking a lap in honor of my family, near and far, who gave me so much support and strength on my journey. Finally, I am walking a special lap in honor of my sister and caretaker, Joyce, without whose quiet strength and joyous laughter I would not have made it through treatment and recovery. I walk in celebration, I walk in gratitude, and most importantly, I walk in hope. -
After this week is over, I am officially declaring the beginning of my summer slack. Stay tuned for details… Y
That's how it began. Exactly one year ago today.
I kept my promise and called the doctor, but it took another six weeks, several tests of varying results, and a definitive lumpectomy before the diagnosis was positively confirmed. When I think of all that has happened in that time I am amazed. It seems like an eternity has passed, yet at times it feels like mere seconds. The last twelve months have been a whirlwind of treatments, operations, a rollercoaster of emotions, and a journey I will not soon forget (even if I tried).
Frankly, at this moment I am not sure how it feels to be here. Here, in my shoes, at this moment. A strange part of me feels like this was a project, albeit a tough project, that I unwilling received and now can check off my list. Something like being assigned to clean the garage. I rolled up my sleeves, did what I had to do, and now I have a clean garage to show for it and it is over. Somehow sitting here all prematurely menopausal with short spikey hair, no breasts, and ill-placed tissue expanders feels nothing like a clean garage.
A part of me recognizes that cancer made me stop and take a harsh look at life and decide what is important and what is not. It has made me change my life. I admit I was rushing through life doing doing doing and never never never stopping to enjoy the moment. Am I grateful that I have had this insight and awareness? Well, yes. Am I grateful it was cancer that brought me this great lesson? Who answers "yes" to that? Unfortunately, cancer is the gift that can keep on giving. Or not. We just don't know.
And then there is that tiny part of me that feels victorious. I got through this far in my own style, on my own terms, and I won. In cancer terms, I won. I'm here and the cancer isn't. The sacrafice was immense, but I won. Or did I? Is the battle over? Is that abdominal discomfort my ovaries? What about that cough -- is it my lungs? That pain in my leg must be bone mets, right? How long will I be looking over my shoulder? How long until I can sleep at night? This isn't what winning should feel like.
Somehow I get up each day, I thank God for giving me a new day, I put on my prosthesis, I gel the spikes into my sexy short hairdo, I smile, and I face the day. I refuse to look back. Every day I try to do some little thing to make the world a better place, whether it is to hold the hand of a friend going through chemo, or encourage someone at work, or challenge a student, or volunteer for a worthy cause, or smile at a stranger. . . I will add to the goodness in this world each day and not dwell on the sadness or be part of the madness. I don't only want to walk in the light, I want to be light to others. Not because I am a breast cancer survivor, but in spite of it. This is what it feels like to win.
Many blessings to all moms and nurturers today.
In honor of the world's most pefect mother, I'll finish the words of the hymn that I began in the title:
On this day, O Beautiful Mother!
On this day we give thee our love.
Near thee, Madonna, fondly we hover,
Trusting thy gentle care to prove.
On this day we ask to share,
Dearest Mother,thy sweet care.
Aid us e'er, our feet astray
Wandering from thy guiding way.
Queen of Angels, deign to hear,
Thy dear children's humble pray'r.
Young hearts gain, O Virgin pure,
Sweetly to thyself allure.
P.S. Jeannette, get well soon!
Today this site will have its 25,000th visitor. I'm not sure where you all came from or how you continue to find me, but I am honored that you come here nonetheless. I can't believe that only nine months have passed since I began this site. Really, time has passed so slowly this last year. I had three goals for creating this blog:
- To share all my research with my four sisters so they would better understand their risk associated with breast cancer.
- To be able to keep family and friends updated in case I wouldn't be strong enough (physically or at times emotionally) to answer questions in your calls, email, or visits.
- Most importantly, I wanted people to understand the physical, emotional, and spiritual ramifications of dealing with cancer. I wanted people to know that we have come so far with breast cancer treatment and there is so much hope. I wanted to remove the fear that keeps women from having regular mammograms and medical exams. I wanted to show myself and anyone willing to listen that life, even during cancer treatment and beyond, has value.
If even just a few of you got my message, then it has been worth it. What I didn't realize when I began this blog was the number of people who started out as strangers in far corners of the world and would become such wonderful support, make me laugh, and share their lives with me. I guess it is indeed true that in giving you truly do receive. Y
Location: Southern California, USA
This is my story about being diagnosed with breast cancer at age 39. I thought I was out of the woods, but four years late it came back. This is my quest to be a two-time survivor.
E-mail me here
A link to information about my diagnosis, treatment plans, gene testing, chemo, surgery information, reconstruction, and recurrence.
Thoughts on Anniversaries, Healing, and Abundant J...
Time, time, time; Look what's become of me....
A New Year
Did I just hear Santa?
The Giving Tree
Faith or Fear?
Is That a Heart on Your Banana or .......
As Breast Cancer Awareness Month Comes to A Close....
Stand By Her
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