Scans

Christmas has come and gone already! The day after Christmas, Caroline and I get up at 5:30 and are on the road to the Dana Farber Cancer Institute in Boston at 6:00 for a 7:10 check-in time on L1. Traffic moves at a clip and we arrive in plenty of time.

My name is called. I confess I took an Ativan when we were half an hour out. So I am relaxed as I strip down to the waist and cover myself with the front-opening hospital “jacket”.  A nice male nurse sits me down to insert an IV for the contrast portion of the test. He then explains, “You will have a panic button in your hand and if you need to stop, you may. However, if you do, the test is over and we will have to re-schedule you.” I ask how long I will be in the machine. Twenty minutes, he says.

As I am escorted into the MRI room, I immediately see a vaguely familiar contraption. I’ve done this before. I am to drape myself, face down over the apparatus while positioning my breasts through the two openings where they suspend into the open air beneath. Both arms are stretched out in front over my head.  I have to catch my breath from the impact of the apparatus on my diaphragm. 

They are quick. The panic button is placed in my right hand. “What genre of music do you like to listen to?” I say, “Contemporary Christian, if you have it.” Moments later a headset is placed over my ears. I hear the technician’s voice faintly say the test is beginning. I don’t hear music. The machine whirrs and knocks. I am so uncomfortable. It seems to take longer than 20 minutes. My arms hurt. I wish I could move them just a bit, but I can’t. I will NOT hit the panic button. I will not. I can endure. And I do. 

“You can get up now,” the technician says. My arms are weak. When I try to lift myself up onto my knees, I can’t do it. I struggle, grunt and groan. No offer of help comes my way. It takes 3 tries, but I finally make it and roll off the edge of the narrow bed. It is done.

The CT scan of my chest is quick and easy. Caroline and I are on the road and home before 11am.

Now I wait for results which drop into my E-Chart the next afternoon. It is the weekend. I won’t get any calls to explain the results for several days. I try to decipher the medical terminology. I see nothing that looks like cancer words. Monday afternoon, I get the call. It all looks good. No evidence of cancer anywhere else. Phew! Another hurdle cleared.

The days are counting down to January 15th. One more office consultation. This one with the plastic surgeon. Hopefully I will feel confident my breast-less chest will eventually be healthy skin. Those images come and I resist dwelling on the what that will be like. Most of the time, I am successful.

I am consciously leaning into my faith, my trust in God, the creator, the power that raised Jesus from the dead. I am re-reading Manifesting God by Thomas Keating. He writes that as we spend time “praying to your Father in secret” that “God’s actual closeness at all times and in every place begins to penetrate our ordinary consciousness. To live in the presence of God on a continuous basis can become a kind of fourth dimension to our three-dimensional world. Forming an invisible but real background to everything that we do or that happens in our lives.”

I close my eyes and pray that will be my experience.

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.