It Is the One-In-A-Million

 A week ago, I sat in a Dana Farber exam room face to face with a surgical oncologist. His business card says he's an "Associate Surgeon, Division of Surgical Oncology, Harvard Medical School." He had grim news. This angiosarcoma that has invaded my body requires what I can only describe as a mutilation of the whole right side of my upper body. 

The graphic images my mind conjures make me shudder. A plastic surgeon will have to close up the area by pulling skin from my abdomen up and skin from above my collar bone down and scrape off skin from my thigh to overlay the gap where the two can't meet. What in the world? Really?

But I will do it. I will do my best to use the treatment available if there's promise of a few more years. Lucas, my 10-year-old grandson, told me today that one of his friends has a great grandmother who celebrated her 99th birthday this year, but she has died since. "You're going to live till you're 100, right LeeLee?" I had to break it to him, "Um, no. I don't want to get that old." This child cannot wrap his head around his world without me in it. My heart melted. 

It took a conversation with my primary care physician, Dr. Emmick, to finally let the tears flow at the thought of this radical surgery; this disfigurement I'm about to undergo. Each day seems to expose my inner battle; my sadness deepens. Despite the emotional and spiritual challenge, the practical still needs to be considered. 

Today my order of three front-buttoned pajama tops arrived from Amazon. It seemed reasonable to me that pulling pajama tops over my head won't be practical. Preparing ahead of time like this -- it seems healthy. It seems like acceptance. 

Yup, one day at a time, stay present, receive all the love coming my way from friends and family following me on my Caring Bridge site. My God will continue to provide and be my strength.

Waiting

I am forced to wait for word from the Cleveland Clinic and their second opinion about my diagnosis. Clearly I won’t hear now, after 6pm on a Friday, until Monday. It is a place of unknowing about several things which are difficult to get my mind distracted from. 

Like, the possibility is high that I have a cancer that is definitely going to shorten my life but maybe I don’t. Maybe it’s very treatable. Don’t think about it, I tell myself.

And, even if it isn’t this cancer that 1 in a million people get in the United States each year, cancer has definitely returned to my body. So what is the treatment? My sense is probably a mastectomy, oh joy! It isn’t easy while falling asleep at night to push away images of what that will be like. Somehow I manage to and have been sleeping pretty good.

Then, when I’m alone in the kitchen preparing a nice dinner for the family, I can’t help but think about what their life will be like when I am no longer here. I’ve never had to really contemplate my death except in the abstract. It has always been just something in the future, 25 years down the road. My grandkids will be adults established in their lives. Yes, they will be sad, but it won’t be a huge impact. 

However, if this cancer is going to kill me early, oh the sadness I will leave in my wake. I shake away the thoughts and distract myself as best I can.

I wonder if my dear husband found himself thinking about what my life would be like without him. He knew he wasn’t going to live, he knew it when we made the decision to cancel our family plans for Christmas at Disney in Florida. He was gone six months later. I’m sure he thought about it, but I never thought about how he would be thinking about it. Now, facing a diagnosis with not a great 5-year survival rate, it’s amazing the thought processes that emerge.

While the stress of waiting feels interminable I know time ticks by and I will have answers soon enough. 

Enter the Fray

"Surprisingly I'm quite calm," I respond to my sister-in-law's text. She can't imagine the stress on me right now. "My faith gives me uncommon strength because I know all will be well whether this side of heaven or not," I write. And I do believe that.

AND then, today happens. My doctor messages me through my portal that she agrees contacting Boston sooner rather than later makes sense. I'm in my car, leaving Walmart, when I see her message. My hands shake as I gather my thoughts. Can I do this on my phone right now? Within seconds the Dana Farber contact form pops up. Name, birth date, email, phone number. Easy enough. Then the diagnosis pull-down list. Brain tumors, breast cancer, gastrointestinal cancer. Nope. As I scroll I begin to wonder if angiosarcoma is listed. I scroll past all the different kinds of leukemia and then it pops out at me under the heading Sarcoma (Adult), "angiosarcoma." 

There it is. It's time to truly enter the fray. I click SUBMIT.

Less than an hour later as I sit with my best friend from high school having lunch, my phone rings. A 617 number with Healthcare in the caller ID. They received my request for an appointment. She doesn't see the pathology report. I explain the situation. She will call me back after talking with the doctors to find out if we should wait on the Cleveland Clinic's second opinion. The actual tissue sample sits somewhere in a lab in Cleveland, Ohio. Dana Farber needs it before any decisions can be made about treatment.

Before we finish our lunch I receive a second phone call. My napkin is my paper. I jot down Tuesday, December 10 at 2pm, and the names of a surgeon and medical oncologist who I will meet with. 

All of this is provisional on the Cleveland Clinic timely response.

It's difficult to know exactly how this step has impacted me. I'm sad. Now it seems more real for some reason. I'm not so sure I'm as calm as I think I am. Images of the near future run through my mind. Drives into Boston. Caroline juggling her busy schedule between work and 3 kids' activities. It's overwhelming to contemplate.

It is real. It is happening. Oh God, let me see and feel your presence.

We All Face Death

I have often thought about what the end of my life will be like. Especially since I began the 7th decade of life 2 years ago. It's such a blessing to be living in this loving, multi-generational home. Collaborating on meals, like Thanksgiving Dinner we put together today. 

But in the wee hours of the morning when I have to get up to pee, my mind's eye always sees my mother, living alone in the apartment over our garage. Did she think about what the end of her life would look like? 

She dreaded the thought of getting Alzheimer's. As a nurse's aid for many years, she had seen her share. She always had a crossword puzzle going and loved her word search magazines. "Have to keep my brain exercised," she would say. She ended up in a locked Alzheimer's unit for 3 years until she died of pneumonia at age 92.

It's funny. I dread the thought of getting Alzheimer's too. I saw it up close and personal walking with my mom through that devastating illness. I don't do crossword puzzles or word searches. No. I try to learn Spanish with the DuoLingo App. It is a well-known fact that learning new things is good for our brains as we age. By the time I had managed to rack up 1,000 days without losing my streak, I still wasn't able to speak Spanish. (I gave it up.)

Now I'm facing the likelihood that Alzheimer's will probably not be my experience. Oddly, it's comforting to imagine being spared that fate. It's inevitable we all will face death. The challenge is to face it with courage and grace. 

Not Again!

In August of 2024, I noticed a quarter size dark spot on my right breast at the site of my 2009 lumpectomy. By the 27th of August, I was getting my breast squeezed, and slathered with ultrasound gel.

The radiologist said, "I can see something going on in the skin that's a little concerning, so let's have you back in 3 months and see if there's any change." 

So last Thursday, November 14th, I found myself back in the ultrasound room at the Elliot Breast Health Center. This time the radiologist said, "It hasn't changed." And I said, "That's good news then." She said, "Well, I wanted to see it smaller. I'm referring you to one of our surgeons." 

A week later, Dr. Shikhman entered the exam room and with a pout on her face, said, "Oh my darling, this is not good. Let me see this." Without any hesitation, she knew from looking at it that this was a radiation-induced cancer. "It's not good. Treatment options are limited. We'll send you to Boston. They see these things all the time." She numbed the area and took a sample for biopsy analysis to know exactly what kind of cancer it was.

Not what I wanted to hear. A little stunned, I drove home wondering what in the world I'm facing now. My first words to Caroline were, "Well, we're in for another ride on the cancer roller coaster." We decided to wait for biopsy results before telling the kids.

Yesterday, I got a call. The nurse apologized they don't have biopsy results to share with me because Dr. Shikhman decided to send the sample to the Cleveland Clinic to get a second opinion. The diagnosis is that serious. She and the lab think I have angiosarcoma. Here is a quote from the Cleveland Clinic website: "Angiosarcomas are rare malignant soft tissue sarcomas, which are rare tumors in and of themselves. Each year, approximately 1 person in 1 million people in the U.S. is diagnosed with angiosarcoma."

Somehow I'm left thinking that will not be the diagnosis. It's too rare. The chances are so low, right? Well, I have to wait until next week. All in good time. All will become clear. I will know what my future holds in more detail. Right now, I know doctors and hospitals are in my future. One day at a time. That's the best way to live through something like this.

An Anniversary

Exactly two years ago I had my final chemotherapy treatment for triple negative breast cancer. It seems a fitting date to resurrect my blog. Breast cancer has been conquered for now and I have my life back. However, my life is vastly different because I had breast cancer. Just this morning when our cat, Jeremyah, woke us up at 4:45 yowling for us to put food in his dish, I thought about those early mornings during treatment, waking up, alone with my thoughts, unsure of what was coming at me in the days ahead. Here I am, in those days, and it feels good.

I volunteered for a breast cancer walking study, "Moving Forward Together," sponsored by the Centers for Behavioral & Preventative Medicine in Providence, RI. I'm rapidly approaching the goal of walking 5 days each week during this 12-week program. I just completed week 3 and walked 4 days, 2 miles each time. Now that's progress! Considering I could barely walk the length of a football field during and immediately following chemotherapy.

Before cancer, I worked -- the same job I'd had for twenty years. Post cancer, I am retired and busier than ever. I babysit two of my beautiful grandchildren on Mondays and Fridays. I take care of my 86-year old mother in the early stages of Alzheimer's. I am meeting every other week with two close friends as we engage in St. Ignatius exercises using Journey with Jesus: Discovering the Spiritual Exercises of Saint Ignatius by Larry Warner. I'm having fun making clothes for my grandchildren as I reengage with Simplicity and Butterick patterns I learned to sew with in 9th grade Home Economics class. Thank you Mrs. Lombard!

My husband and I celebrated our 40th wedding anniversary on October 16, 2011! I feel so blessed to still be married to my best friend, my rock, my support, my devoted husband. Sometimes I feel like I don't deserve him, he is so good to me.

So I celebrate two years cancer-free and the new life that breast cancer has unexpectedly brought me to.

Life is Good

My radiation oncologist tells me my skin will start to get red after 12-14 treatments (out of the 36 or so total). I just had my 8th treatment yesterday. So far so good. I know the 35-minute drive one way every afternoon for my 2:00 appointments is going to become more and more of a drag, but I'm determined to remain positive and upbeat about it. The good news is both of my children and their families live within minutes of the Elliot Hospital. My hairdresser is there too and pretty soon I'll need to get my new head of hair trimmed and shaped. That is really good news!!

My 7-month old granddaughter, Anna, loves to rub her hands over this soft, new growth on my head. I stand her up in my lap and drop my chin as she squeals in delight to touch it with both hands. It's quite comical actually. Lots of people want to feel of it because it looks so fluffy and soft. It's fine with me. I invite them to if they mention it.

So now here I am, near the end. Because the pathology report from my lumpectomy and the sentinel node came back completely clean, we know the chemo took care of the cancer. My oncologist tells me I have a 90% chance of being cancer-free from now on. I recently read about someone who had been given that good news who had a recurrence after three years, so nothing is certain. If I approach it from a philosophical point of view, we're all going to die from something someday anyway, so if my cancer recurs, it recurs. I'll deal with it then. In the meantime, I'm not going to dwell on the possibility.

Looking back over the past eight months, I think about the three New England seasons it has spanned: Summer, Fall, and Winter. The Summer and Fall were actually nice seasons to go through chemotherapy because I could enjoy the open windows and listen to the birds and watch the leaves rustle in the breeze on days when all I could do was lay on the couch for hours on end. The easy recovery from surgery in December and January flew by. And now, with Spring just around the corner and timed pretty much after my radiation treatments will be done, it will be the season of renewal and reclaiming my life even though it is going to be much different than the day before my diagnosis!

Life is good!