Coping with Ovarian Cancer: A Personal Journey

Yesterday I had a conversation with a woman who has ovarian cancer. She has gone through surgery, radiation, and at least two rounds of chemotherapy. She had just had another PET scan and she was eager to get the results. “I know my last blood work showed I have cancer markers,” she said without emotion, “but I don’t know whether the cancer will show on the scan yet.” One way or another we will die, it’s just a matter of time. The dying isn’t the hard part, it’s the staying alive that takes some endurance.

Day 17 (of 31 days of free writing)

Tea Service

The first time I went to the outpatient infusion center the nurse who checked me in took my blood pressure, recorded my weight, then smiled. “Your lucky, you’re just in time for the tea ladies.” Sure enough, just as I settled into the reclining chair a volunteer rolled a tea cart loaded with choices in front of me. My worry about how difficult my veins were for a nurse to stick evaporated as the “Tea Lady” poured me a cup of steaming mint tea and handed me a cookie.

That was twelve years ago.

For the next ten years I made regular trips in for infusions of clotting factor. I scheduled my appointments for mid-afternoon when the Tea Ladies would be there. When I discovered that I would no longer need infusions of clotting factor, I told the nurse, “I’m going to be a Tea Lady.”

“You don’t need to come back any more. Just enjoy your freedom,” she replied.

When I had fully recovered from transplant surgery, I told a friend I was volunteering once a week at the Cancer Center, she asked, “Doing what?”

“Serving tea,” I replied.

“Your grandmother would be so pleased!” she exclaimed.

The thought had not occurred to me. I had not known my grandmother at all. I had only seen her once briefly when I was five years old, but I was very familiar with the country farmhouse in Canada where she had raised her ten children. There the tea kettle sat steaming on the wood stove. It was ready to make tea all day. Although the china cabinet in the dining room was battered with wear, the fine English bone china cups and saucers behind the glass doors glinted. Some of the fragile fluted edges had gold rims that sparkled when the sunlight came through the dining room windows. All the cups had paintings of delicate pink, or yellow, or blue petals, and trailing leaves. These treasures were not kept for special occasions, but were pulled out and used whenever a cup of tea was served. My mother had learned to brew a pot of tea for guests from her mother. In turn my mother had taught me by her example. Steeped in tea by my mother’s hospitality, I had watched as every person who entered our home was offered a cup of tea. Tea was just how we welcomed people.

Now each Tuesday afternoon I take the empty carafe to the coffee shop to be filled while we arrange the cart. Then I fill the electric kettle and click the tab to set it boiling. I open the cabinet to check the tea supply on the cart. The cart should have a generous sampling of teas, Earl Grey, English Breakfast, decaffeinated tea, herbal teas and, green tea. As I do this my team mate arranges the tray of cookies and cupcakes donated by two local bakeries. She has an artistic sensibility and the platter looks scrumptious.

I double check. Are there enough packets of sugar and a variety of sugar substitutes, napkins and, stirrers? Despite the checking and re-checking there seems to always be one thing we forget. One week we forgot the single-serve cups of half and half. If we forget or run out of something, one of us dashes back to the supply room.

When the cart is loaded we head towards the Cancer Center elevator, “Let’s not forget to pick up the coffee this time,” my team mate chuckles as I round the corner pushing the cart. We both look forward to seeing the faces of outpatients and their companions relax and smile as we come into view.

“When you have nobody you can make a cup of tea for, when nobody needs you, that’s when I think life is over.”

― Audrey Hepburn

Rare Disease Day 2016

 I see a dermatologist once a year just for a check. It happened that my appointment this year was on Rare Disease Day. The doctor said, “How long has this spot on your face been there?”

“I don’t remember,” I said.

“I don’t like the look of it.” He left the room and came back wearing magnifying goggles. After he stared at it through the glasses, he said, “I’m going to biopsy this spot.”

“Remember, I have a bleeding disorder.”

“It won’t be a problem,” he said. “I’d sleep better tonight if I biopsied it.”

If my brain had not shut down after hearing the word “biopsy,” or if he had not made it sound so urgent, I would have said, “I’ll need to get an infusion before you do any cutting.” When I feel afraid, it shuts down my thinking temporarily. I was in flight response and I just wanted this suspicious spot on my skin off.

The doctor left the room and the nurse snapped a photo of the spot. Then she turned her back to me while she uploaded the photo into the computer. Much to my surprise she had a syringe and was pointing the needle at my cheek. “This will sting a little, but it will numb the area.”

“No,” I said switching to fight mode. “You’re not going to inject anything. It will only make a second place to bleed.”

She made a face and said, rather gruffly, “I’ll have the doctor come speak to you.”

When the doctor came in he said, “What do you want me to do?”

“Either use a topical anesthetic or nothing.”

“We can put a topical cream on and wait several minutes,” he offered. I could hear the hesitation in his voice. Was I slowing down his efficient routine?

“I’d rather you used nothing for pain.” I glanced at the nurse who visibly cringed.

“Ok,” and off he went to get his surgical kit.

In two seconds he was done. Then he put a gauze pad on the wound and told the nurse to hold pressure on the spot for five minutes. “It’s just oozing,” the doctor said confidently.

That was when I began blaming myself for allowing this procedure to be done before getting a dose of fibrinogen first.

Five minutes later the nurse pulled up the pad and peaked. “Still oozing,” she said.

I refrained from saying, “I told you so.”

After another five minutes the cut was still oozing. Again in another five minutes, it was still oozing.

“Can you hold the pad while I get the doctor?”

“Sure,” I said. I sighed heavily, realizing that half of tomorrow would be spent getting an infusion. It was too late in the day to get it done now.

The dermatologist came in looking a bit concerned, but not apologetic. What was normally easy for him, looked more challenging now that he understood the consequences of what he believed was a simple procedure.

“We could put some jell foam on it and bandage it securely,” he offered.

“That would be a good idea,” I responded trying to cleanse my tone of sarcasm.

The nurse muttered, “I’ve never used jell foam.”

Before the doctor could respond, I said “You’ll have to sterilize scissors and cut a small piece to put over the cut. We used to keep jell foam in the house when I was a child and my mother sterilized the scissors with rubbing alcohol.”

“Right,” the doctor said, “and crisscross the tape to keep the bandage on tight.” Off he went to another patient.

I left the office with a bandage that covered more than half my left cheek. The waiting room was standing room only by that time. I got in the car and called the hematologist to see if I could get an infusion the next morning.

The hematologist removed the bandage after the infusion so she could see the cut. It was less than a half-inch slit, but three days later she had me come back for another infusion, just to make sure the cut healed fully.

The following week the report came in the mail. Benign.

“It never fails to amaze me how so many doctors – your’s in particular – always know so much better and refuse to listen. I mean, you’ve lived with your body for six decades. Is it a guy thing?” my cousin commented afterwards.

In truth, I think it is just part of the territory for having a rare disease.