Part 3: I Couldn’t Seem to Stop Holding My Breath

Part 3 of a four-part series on Attleboro resident Melissa Riley's experience with breast cancer. 

After my lumpectomy surgery, I didn’t think I was actually sick so it was with a guilty conscious that I accepted weeks of home-cooked meals from my neighbors and friends at work. I thought that I would be losing weight during the radiation treatments so I helped myself to more brownies than I am willing to admit!  I learned later that many people gain weight during radiation, eight to15 pounds! Oops!

While rereading my first two journals, I noticed that I wrote more about what actually happened rather than having shared my feelings. This reinforces to me that I truly wasn’t feeling anything. In fact, I was numb, until the treatments ended and the cancer “sunk in.”

Because my surgery was a week and a half prior to the April school vacation, I was fortunate to have three weeks of physical and emotional lumpectomy recovery. I needed it.

I was feeling OK, but still went into Borders asking for a “trashy” book recommendation for a “sick friend” who was having trouble concentrating. Yes, I did enjoy a few trashy books. They were a great distraction.

My daughter, wanting to cheer me up, took me out shopping for a few new spring blouses to wear when I returned to work. She did all the picking. I couldn’t concentrate or make even a decision as insignificant as color or style.

I didn’t realize I was depressed or needed cheering up. I didn’t realize that I was holding my breath, I guess in anticipation for the next “cancer” step.

Under Pressure

Of course, by now, I had told my mother who became manic in asking everyone she knew and people she didn’t know about my diagnosis and what they thought my best options were.

A worried nurse friend was insistent that I go to Boston or Providence to one of the bigger hospitals for a review of my cancer.

So now in addition to not being able to concentrate, not being able to make decisions, feeling depressed and holding my breath, now I felt pressured. At this point, I wanted the doctor to just tell me what to do. I didn’t want any choices. I didn’t want to read anymore about it. I just wanted this over with and behind me.

Luckily for me, one of my neighbors is an oncologist, although not practicing. She was extremely patient in re-explaining for my husband and me the surgery that I had and the treatments I would undergo next. She made an appointment for me with a former classmate of hers who now specialized in breast cancer at Massachusetts General Hospital in Boston.

Going to Boston would calm my mother and my insistent friend. Maybe a modern setting would reassure me as well.

In the meantime, my surgeon was pleased to tell me that my healing process was going very well, but I was surprised to hear that I had to now have radiation therapy. I guess I was fooling myself thinking that because my cancer was small and caught very early that I was done. Or maybe I just blocked out the whole idea of radiation.

The doctor went on to say my cancer was “on the cusp” of requiring chemotherapy as well. I didn’t have chemotherapy. Maybe I should have, I often wonder.

Later on, when my treatments were completed, I read "After Breast Cancer" by Hester Hill Schnipper, a book that I would certainly recommend. The author advises not to refer to the cancer as “my cancer.” I’m not really sure how to refer to it, but I will try not to say “my cancer” again.

Visit to Mass General

Now that the lumpectomy was healed I was ready for my appointment at Mass General. After completing a registration procedure over the phone, I was given instructions regarding what to bring to my appointment. I needed every mammogram that I have ever had and I needed to request that a tissue sample of my tumor be sent to Mass General.

My team of doctors at Mass General Breast Center all specializing in breast cancer included an oncologist, surgeon, pathologist and radiologist. Prior to my appointment this team reviewed my mammograms and tissue sample. During our appointment with the doctors, my husband and I learned that they agreed with the Sturdy reports that I had stage 1, invasive lobular cancer of an aggressive nature.

The doctors carefully studied and discussed the tumor “margins” before deeming them to be “clean.” That meant that the surgeon removed the entire tumor, because all around the removed tumor was the required margin amount of healthy tissue.

My prognosis was excellent. I was to undergo 35 sessions of radiation and then take a medication called Arimidex for the next five years. I would see the oncologist every six months and continue having mammograms every year.

I didn’t need chemotherapy; I think, in part because my lymph nodes were “negative,” meaning no cancer had left the breast and invaded any other part of my body.

I don’t know think, but if I hadn’t been going for yearly mammograms, my cancer, which was spreading, could have made its way into my lungs or other parts of my body. I learned that stage 0, 1 and 2 breast cancer cells are still confined to the breast. Stage 3 and 4 breast cancer cells have entered the lymph nodes and are now in other parts of the patients’ body.

Luckily there is an oncology center in Mansfield so it wasn’t necessary for me to travel to Boston everyday for radiation. Before starting my husband and I met the doctor who was an oncology radiologist. He explained that radiation is necessary to kill off any microscopic cancer cells that may not have been removed during surgery and still may be lurking in my breast. No, he didn’t use the word “lurking.”

Tattooed at Sturdy

He sent me back to Sturdy for a mammogram so he could compare pre-radiation with post-radiation films. Ouch! After only a month post surgery I was still a bit sore.

I also needed a bone density test. The radiation lowers your immune system can cause “thinning” of the bones. In addition to a multi-vitamin, I also need to take extra calcium for bone health. The bone density test is easy, a bit like an x-ray and only of my arm.

After getting to know the doctor, my next appointment was scheduled for “mapping.” Since radiation will kill off healthy cells as well as cancerous ones, it’s crucial that the radiation doesn’t touch the heart or lungs.

So, lying down, with my arms stretched over my head on the table of a huge, I think, MRI machine, three ladies arranged me, measured me, X-rayed me, arranged me, measured me, X-rayed me again and finally called in the doctor.   The doctor checked all of their measurements with the MRI computer and gave the OK to tattoo me! In all, this took about an hour.

There was a giant flat screen television on the ceiling with a photograph of a beautiful landscape with a hot air balloon and music of your choice to keep you distracted.

The two permanent tattoos, used to guide the radiation ray into my breast at the exact location of the excised tumor are about the size of pencil tips.

I drove ten minutes to my radiation treatments, right after work, Monday through Friday. I never had to wait. I was in and out of the center within 20 minutes. The radiation ladies were always cheerful and no, it didn’t hurt.

I never got into my car and said, “Oh, my God, I might still have cancer.” I never thought about what I was doing. One of the teachers at school who had also undergone radiation assured me that I would be OK and that helped.

I had a card that I scanned when I went into the center. I went into a dressing room and came out wearing a “top johnny.” In less than five minutes a technician brought me into the radiation room. The technicians were always pleasant, wanting to know how my day at work went, how I was feeling and if I had any exciting plans for the weekend.

There was a television on the ceiling displaying a sequence of beautiful nature photographs. Again there were two ladies sometimes three who would make sure the table was angled up correctly, my arms were stretched correctly and I was arranged with foam cushions exactly right before leaving the room and shooting the radiation through the breast. If it were chilly, the ladies would drape me with a heated blanket.

The radiation went in one tattoo and then the machine rotated and a second ray was sent through the other tattoo.

During a few of the radiation appointments, I was taken back into the “tattoo” room and had “pictures” taken. After a long day at work, I never thought to ask what these pictures showed.

Heartburn and Sunburn

I began having chest pains during this time. Thinking the cancer had now invaded my lungs; I went into see my primary care doctor who told me that I had heartburn. Medication and a change in diet solved the heartburn. The heartburn disappeared, once the radiation treatments ended.

During the seven weeks, 35 sessions of radiation I was not allowed to use a deodorant containing aluminum or any lotions other than what was given to me by the doctor.

The oncology radiologist doctor checked me every Monday. I am fair-skinned so instead of tanning me the radiation sunburned me. He was sympathetic seeing how burned I was becoming and gave me lotions, which he upgraded as the sunburn worsened. By the last week of radiation I was using a lotion with lidocaine to numb the pain. The doctor assured me that once I was done, my skin would heal and it did.

My students at school were very sympathetic, too. I wore loose fitting sleeveless tops and if I stood with my hand on my hip, like Paris Hilton, my bright red armpit wouldn’t hurt so much.

My breast was enclosed in a perfect bright red square of radiation-damaged skin. Wearing scoop-necked tops, one of the radiation bright red corners was visible. Wearing very lightweight tops, no bra, only light undershirts helped, but as the radiation continued the radiation sunburn became very painful.

I tried listening to relaxation tapes. I tried writing in a journal. I tried talking “about it.” I tried listening to everyone else’s stories. I tried reading more about cancer online. Nothing worked. It wasn’t the radiation that was worrying me. I continued to hold my breath thinking about what was next.

Need to Breathe

I must have been breathing, but I didn’t feel like it.

My teaching teammates encouraged me during the radiation treatments to work four-day weeks. I was hesitant at first but after the first two weeks I agreed.

June was a crazy time for me because while I was involved in radiation treatment, I was also getting ready to retire after 35 years of teaching. I was so consumed with the radiation and holding my breath that it was hard to enjoy my last weeks at school.

Once school was over, I had five treatments left. My husband took me back and forth to these last appointments, even without teaching at this point, I was exhausted.

I was grateful to hear from a cousin who also had breast cancer that even after her radiation treatments were completed, she spent her days going from her bed to the couch back to bed and then to the couch for weeks.

Hester Hill Schnipper in her book "After Breast Cancer" explains, “The rule of thumb is that it will take at least the same length of time to regain your usual sense of well-being as was the total duration of your treatment.”

This worked pretty accurately for me. I was diagnosed in March and finished my treatments four months later in July. As it happened, four months from July was November and sure enough I was beginning to feel like my old self again. I was finally beginning to breath again.