Living with cancer

Last modified: 2/29/2016 7:06:09 PM
Recently, I’ve been talking about living with cancer. I realize for many people it is very difficult to talk about or face, for others they don’t want to make the news public knowledge; for some it is easy because it is personal therapy to be able to talk about it and still others like talking about it because it might help someone else.

I find myself in the latter two categories. For me, talking helps me and my hope is it helps others as well. I have always been a teacher and have loved being a caregiver. I was diagnosed with breast cancer in September 2007 when I was the second-grade Well School teacher. I had a mastectomy, chemotherapy and radiation.

At first, the parents of my students were very worried about me staying and being their child’s teacher. They were worried the cancer would get in the way of teaching and would scare the kids. Obviously, the parents were very worried for themselves as well — having to discuss disease and dying with a 7-year-old just sounds scary and difficult.

I remember how my own mom had trouble talking to me about death when I was a child, but as an adult I figured out that I just needed to be honest and attempt to be as comfortable as possible with whatever I said to help children feel safe. My second-graders were like my own children. They helped me so much through that year’s treatment, and I hope I helped them too.

I don’t believe in keeping secrets and I don’t believe in telling lies. So I decided that when I told my children, I was going to tell them the truth and, whatever I was asked, I would answer truthfully. If I didn’t know the answer, I promised I would find out and would let them know. I wanted them to understand that at some point in everyone’s life they will face something very hard and they have to decide how they want to deal with it, with courage, optimism, fear, etc. We all have choices, even when the situation is tough.

What I discovered from my second-graders was none of them were scared or worried. In fact, they asked amazingly interesting questions, such as what does cancer look like, what color is it? They were fascinated that I would soon not have any hair. I tried on many different wigs and took pictures of myself and showed the kids what I looked like with serious as well as funny wigs on.

They found it all very humorous; it was like Halloween came early. They understood I would lose my hair in about 17 days. Honestly, they couldn’t wait to see me bald. I had promised them that they could. A few parents were very concerned about that aspect. They were fearful their kids were going to have difficulty seeing me that way. Boy, were they wrong! The first day wearing a wig to school, the children begged me to take it off. “Take the wig off,” and when I did they said, “You look better bald than with a wig or your own hair. We want you to always be bald in class.”

Then, they asked what they needed to do to take care of me. I explained that I just needed to always make sure that people were not sick and their hands were clean. So we instituted a policy, you can either wash your hands with soap and water before you come in or use the hand sanitizer we had in the room. We often would have a visitor come to our class, and my students would stop them at the door and say, “Wash your hands before you come in here, we are taking care of our teacher.”

The rest of the day was just normal; we would read, study history, science, Spanish, work on being in a play, knitting, playing outside, all the normal things second-graders do. I learned more that year from my kids than any other year. They showed me that they are naturally kind and caring, and they’re not afraid of something different. They made it easy for me to go through treatment.

I never missed a day of work, except when I went in for eight chemo treatments. Even when I went for radiation every day for six weeks I would go to school first and work, and then go to Boston. Each day a different parent from the school would drive me to Boston and back. I realized that I had an incredibly wonderful community willing to help me, even today. I also realized the importance of being completely open and honest with people. The benefit to me was being able to talk about cancer openly and have a very strong relationship with my class of students and parents.

Some of those kids today are sophomores at ConVal. My students even gave me the nickname “lizziebet.”

I came away from cancer feeling I was lucky to have learned so much and have so many wonderful people in my life. I never felt unlucky about getting cancer, or asked the question “why me,” because so many people in this world are diagnosed with cancer, and it’s not a punishment, it’s just an unfortunate thing that happens.

Things I learned in 2007

Number one: The importance of accepting help and being comfortable with assistance. This was a very hard lesson, given I love being a caretaker, but I slowly realized when I accepted help from someone, I was giving them a gift as well. People worry and are frustrated about how they can help you when you are sick. They want to feel good and helpful. The way to help that person is to allow them to help you, that is your gift to them. You ease their frustration, worry and struggle to find something that will help.

Number two: Always look for the silver lining. If you look for the positive, you will find something, guaranteed. I discovered I am so lucky to have amazing people in my life, family, friends, students, parents, as well as strangers.

Number three: When you are looking for silver linings and being positive, life is much easier to live and it helps those around you. Number four: You never know what anybody is working on or dealing with personally. Everyone in life has something difficult they’re struggling with. Often we do not know because the person has kept it to themselves and on the outside looks fine, but the fact is we should have empathy for everybody. Everyone struggles with something, and should be respected and cared about.

Fast-forward to 2013

After that I did not have cancer until September 2013. The very end of August, I had a seizure, which my daughter witnessed, and she and my husband saved me. We discovered that I had some cancer cells that moved to my brain and were hiding, and suddenly were beginning to show their evil heads. It was determined that the cells went to the interior brain prior to the original surgery and that my body from the neck down was clean of cancer. The 1 cm encapsulated tumor was removed from my head. It was considered the best prognosis I could get, because if there were additional encapsulated tumors, the doctors simply had to give me one or two radiation treatments for the new tumor and I would be done with the treatment. For a year, I was going every three months to have an MRI and everything looked good.

Last fall, I went for my three-month check up and the MRI showed a change. It showed that the outer brain was lit up a bit. This was not good. Imagine your outer brain looks sort of like the state of Maine with all the coastal inlets. The MRI cannot see everything in the inlets, so basically they can never say for sure they got everything. This type of cancer, called leptomeningeal disease, is very rare, less than 1 percent of people with cancer in the world end up with this type of cancer. It is even more rare for those with breast cancer. If breast cancer comes back, it usually goes to the lungs, liver, kidney, or bones.

Currently, the doctors are trying this experimental treatment on me because they are trying to see what works to keep this cancer at bay. I am beginning to see changes in me. I have difficulty walking now, which makes it very difficult to do things. I try to stay active and help others, but it is much harder given my walking and driving ability.

For me, this timeframe has been the hardest emotionally. At times, I have felt worthless, and I realize it is due to my love of helping. It is hard to help when you have trouble physically moving. It’s sort of comparable to an older person not being able to drive a car or who is losing their memory. I think about people with Parkinson’s or Lou Gehrig’s disease. Imagine suddenly not being able to walk well, or talk, or take a bath or shower, unable to cook, clean the house or do the laundry. You feel you are losing your own freedom.

I believe there’s something I’m supposed to learn from this. I’ve spent a lot of time thinking about it, and I think here’s what it is.

When something physically fails, it is suddenly difficult to complete everyday chores. I need lots of assistance now with things that I have always been able to do. As a result, I’ve learned I need to be much better at accepting help.

Believe it or not, I miss terribly not being able to do chores, even chores that I used to hate, like cleaning the house. But I’ve learned that I can still do some ordinary tasks, which — because I can still do them — makes them truly extraordinary! These are my silver linings. Ordinary has become extraordinary in my life. I enjoy every moment of these mundane activities. For me, chores are now joys.

I hope all of you can enjoy every moment you have, even the mundane ones. Every moment is an extraordinary gift you have been given. Ordinary is extraordinary. Every ordinary moment is the gift of life.

Elizabeth Marble, of Peterborough, is a former Well School teacher.


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