Learning A New Language Called Cancer

The thing about Cancer and the medical world is, if you haven’t had to navigate your way through it before, it’s like learning a new language. It feels like you are in a foreign country where everyone seems to know what is going on but you.

You see, my husband has this large mass atop his right lung which was spotted in an X-Ray in an Urgent Care Facility almost exactly one year ago. How and why it was detected is a whole other story which I will tell you now.

Paul seemed to be slowing down a bit in the months leading up to our findings. He was slowing down on our walks, resting more and I just assumed he was “buying in” to the fact that he had turned seventy and was “getting old”.

Around Christmas and perhaps even before that, I had noticed that when he sat in this particular chair his neck looked a bit larger. I was thinking that it was probably because we had been enjoying the food of the season and maybe he had put on a little weight or that the chair didn’t have good head support. It was not so noticeable that it made me really think anything more about it, but every once in awhile, I would think “hmmmmm”.

As the New Year came along, I began to notice that his face seemed a bit puffy or swollen, particularly on one side and mostly in the morning. I thought he should check in with a doctor. He didn’t notice it at all and thought I was crazy when I brought it to his attention. It got better as the day went on so he didn’t feel the need to go. I also noticed he was sighing a lot when he exerted himself. I would ask what was the matter, and he attributed it to allergy season etc. I bought it because he has allergies and the seasonal allergies were different on Cape Cod than when we lived closer to Boston. I urged him to have it checked out. When the swelling seemed to get worse on the right side of his face, and his eye was very puffy, I finally called the doctor myself and set up an appointment for him.

I went with him one evening and met his new doctor who decided to treat him for a sinus infection. A little time passed and it got worse. Paul went back a second time thinking his medicine wasn’t working because the swelling had progressed. The doctor added a medicated nasal spray. No changed occurred with the nasal spray.

Next he began waking up with purple colored ears. Then purple spider vein blotches appeared on his chest. Paul didn’t even notice them and there were many. We were in the bathroom together one morning when he appeared from the shower and I saw all of these blotches and was quite alarmed. Paul still didn’t see what all of the fuss was about. One more trip to the doctors occurred to show him these blotches, and the doctor looked at his recent blood work and said that there was no indication of any problems. He didn’t seem concerned.

When he woke up one morning with a very swollen face, purple blotches on his chest, purple colored ears and a purple colored hand, I got extremely concerned and turned to Google. I typed in “purple blotches on chest” under Images. Up popped two pictures of a man with a swollen face and the time stamped on the bottom of the picture as 7:30 am. It showed a second picture of him looking like his normal self. It was very similar to Paul. There were also pictures of purple spider vein blotches on his chest strikingly similar to Paul’s blotches. Then I saw the letters SVCS. Superior Vena Cava Syndrome. “Superior vena cava syndrome (SVCS), is a group of symptoms caused by obstruction of the superior vena cava (a short, wide vessel carrying circulating blood into the heart).”

I called an RN I knew who I had been talking to about Paul’s unusual symptoms and she seemed a bit alarmed when I told her what I found. She said that he needed to go to Urgent Care right away where they would be able to do an X-Ray and that I should tell them what I thought it was. I called home to let Paul know what I had found and that we should be going to Urgent Care that very day and he agreed.

X-Rays were taken. A large mass sitting atop his right lung was found. Our learning of a new language had begun.

(if you read my first blog “Without Our Permission”, you will learn what happened next.)

Without Our Permission

     “Who decided you should come here for an X-Ray?” the Urgent Care doctor asked eagerly.  Paul and I looked at each other for a moment and then I replied, “I did!” “What is your profession?” he asked.  It felt a bit accusatory, so I sheepishly replied, “I’m a theater educator.” “Hmmm…well it was a good call. You were right on!”  His gaze shifted to Paul. “The X-ray showed a large mass sitting atop your right lung.” It was the first time in my life I didn’t want to win the “prize” for being right.

  The word “mass” hung in the air for what seemed like forever, and we were both transported to a place we didn’t want to go.   I’m not sure I remember much of what happened next. We were sent a few miles down the road to the hospital emergency room for further testing. I really don’t remember that ride or the hours of waiting, testing and admittance to a room. After Paul was admitted and asleep, I drove home in the wee hours of the morning. I have a faint recollection of pulling off Route 6 as the realization hit me and I couldn’t see through my tears to drive. I went to bed that night in shock and curled up in a ball.

  I awoke a few hours later and called my sister, knowing she would be awake early. My words spilled out in a flurry of choking sobs.  She could barely understand me. “They found a large mass on Paul’s lung” I tried to say. I was unintelligible. When she finally got the message, she comforted me in the only way she could.

    After the call, I got ready to go back to the hospital. My mind shut down, and the normally organize part of me was overshadowed by that one word…”mass”.  I was numb. In that one fleeting moment in Urgent Care, everything in our lives had changed forever.

    Next, were the difficult and emotional calls to all four children, and then a flood of confusing events. A wave started rolling and picked up speed as my mind tried to catch up and snap to attention.   A whirlwind of family visits began, with doctors and nurses fading in and out. We quickly had to educate ourselves with a new language as we navigated aimlessly through a sea of doctors, nurses, MRI’s, CT Scans, PET Scans, oncologists and radiation oncologists. Hospital trips, a collapsed lung, lost biopsy material, back and forth cancer diagnoses too place, and then finally on to Dana Farber Cancer Institute. “Stage four non-differentiated Thyroid Cancer”. Cancer…the one word which would now define our lives every day.  Words and phrases that also swirl around in my brain continuously are “ metastasize”, “aggressive”, “tumors”, “incurable”, “chemo”, “whole brain radiation” and a plethora of new words and phrases pertaining to my husband’s illness. “Get your affairs in order!” That was the phrase that hit us the hardest.

   Almost a year has passed, and I still shake my head wondering how this could’ve happened to my amazing husband, friend, and the love of my life. This man, who is such a loving father and grandfather, who was and still is loved by his former students and the person who is at the center of my heart.  Paul taught music in a public high school for over thirty years and rarely called in sick. Now, every day we have Cancer at the forefront of our minds as we deal with Paul’s treatment and the havoc it has wreaked on his body and our lives.

   We had moved to Cape Cod just three years ago to enjoy our lives together in a place we love.  It took us years to get there. We spent most of our thirty-four years together giving of ourselves to others and we wanted a little piece of mind in a place we love.  We wanted to walk on the beach, smell the sea air, enjoy the quiet off season and spend real time with each other and our family and friends. This is the script we had written for ourselves. This is what we had to look forward to. The script has been rewritten without our permission.