Coping Strategies

My daughter attends Solomon Schechter Day School here in Connecticut. The community of parents, teachers and Rabbis at the school really rallied around us. I liken it to circling the wagons with my family in the center. They arranged for meals to be sent home with Sarah 3 days a week. People who had never met me cooked meals. They didn't cook enough for 3 people they cooked enough for 20 people. The meals were well balanced with protein, vegetables and starch.

The one thing you hear over and over again during Chemo is complaints about your weight loss from your doctors. You will most likely have no appetite and eating will be a chore. For me cooking was very difficult. If I had the energy I couldn't stand the smell of the food. Honestly I had 3 days each cycle I could barely get out of bed. I was losing 7 to 10 lbs a week. I finally came up with an eating strategy.

• Drink Boost twice a day outside of meal times. It tastes yucky but is loaded with things you need and the chocolate wasn't horrible.
• Cut your entire meal up before eating anything. My husband would do this for me.
• Eat as much protein on your plate as fast as you can. Don't talk don't stop don't drink. Remember eating fast gets more food into you before you are full.
• Only eat foods that are high in things you need. So junk food is out.

It doesn't sound like a big deal, but once I started eating this way I stopped losing weight and boosted my immune response.

Parents of kids in Sarah's class drove her home when I couldn't get there. They had her sleep over on school nights if I had early doctor's appointments. In general they treated her like she was their own child. You certainly don't expect this and I would bet you can't depend on the support, but it made everything easier for us. In earlier posts I talk about accepting help from people. This is a great example of this point. My daughter's school is a 40 minute drive from my house. As much as I still wanted to pick her up everyday, I just couldn't. I needed people to pick her up from school till my husband could get her.

This was the hardest coping strategy for me. I threw all thoughts of Self Sufficiency away. I needed help and asked for it. I made keeping things sort of normal for Sarah my priority, my ego be damned. I never forgot to say thank you when people helped me and did so publicly in the school bulletin when Chemo was over.

I found at the beginning of treatment, I was having the same conversation 10 times a day. It was also the same conversation every day. This was taxing for many reasons.

• All that time on the phone was exhausting.
• I felt like people had nothing to say to me that didn't pertain to Cancer and Treatment
• It was really boring. You know you have a problem when you bore yourself.

We set up contact points. These where people who could call and ask about treatment or how I was feeling. We had five of them and each had a different day. Everyone else was told that they could call if they didn't talk about my health. Each was given a contact point who filled them in on the details. I suppose this sounds harsh or maybe selfish, but is there a better time in your life to be selfish? I think not. In the end, I got more rest, had conversations that were more interesting and enjoyed my time with my friends and family. All of these things improve your outlook and therefore your outcome.

I want to speak a little about depression. While I never really felt sorry for myself, I did have a very bleak period when I had an infection and was very sick where all I wanted to do was run away from home. I was aware enough to realize I was depressed and sought the help of a social worker who pointed me to a Therapist who specializes in Cancer patients. I ended up on Cymbalta, an Antidepressant that works well on Cancer patients and has the extra added side effect of increasing your appetite (also good while you are on Chemo). I continued seeing my Therapist even after Chemo was done and stayed on the antidepressants for almost a year. Really needing some help with depression is not a big deal. Chemo causes physiological changes that can lead to depression and it can take a year or more for the effects of the Chemo to leave your system.

Coping Strategies - My Daughter

First off, I am not a psychologist or therapist in any fashion. I can only tell you what I did and if it worked or not.

My Daughter
My daughter Sarah was 6 at the time of diagnosis so I had a somewhat difficult time explaining things to her. We explained that everyone's body is made up of different kinds of cells that do all the things your body needs. We said:

"Mommy's body has some bad cells in it. Those cells grow very fast and the doctor is going to take them out. I am going to go into the hospital and have my surgery and you can come and see me. After the surgery mommy will have only one breast, but she will get a fake one made of rubber that she can wear. When mommy is all healed, she will start treatments to kill any bad cells the surgery might have missed. The treatments may make mommy very sick, it will make her hair fall out and she might not be able to do all the things that you are used to."

This quote may not be verbatim but it is very close. We didn't feel we need to say more and we then allowed her to ask any questions she wanted. She only had one, "Are you going to die?" I can't even begin to explain how gut wrenching that question was. I answered her honestly with, "I don't know but I am going to do everything in my power to get better." This is one of the things I think we did right. We were honest with out Sarah every step of the way. We took her to meet all of the doctors and let her "approve" them. I am not sure what I would have done if she was really uncomfortable with ones I had chosen.

I was fairly certain my daughter wasn't sure I was going to be me anymore after my surgery. My husband and I decided together not to bring Sarah to the hospital until I was up and walking fairly easily. Luckily the nurses wanted me up and around as fast as possible and it was only one day before she could come and see me. I got up and walked around the hall with her. She climbed in the bed and snuggled with me which was one of those things we did all the time at home.

Sarah was thrilled with the fake boob and wanted to take it to school for show and tell. We thought some of the parents, especially those of the boys, would think this was a bad idea so we passed on it. She did tell everyone we met including strangers about mommy's fake boob. We decided that there was no harm in this and didn't try and curb the behavior. I felt it helped her deal with things.

I had long hair when I was diagnosed but cut it shorter before the initial surgery. I knew I would be hospitalized for four days and would possible not get a shower for a week and I felt long hair would be a drag. I was fortunate that my hair dresser, Ellie, had experience with her mom having breast cancer. She was happy to work with me on my hair. We made a plan to cut my hair a little shorter ever week until I started Chemo. My hair was in a very short boy cut the day I started. We did this so the change from hair to no hair would not be so drastic for my daughter. My husband also made arrangements with Ellie for me to stop by on the way home from the hospital and get my hair washed. This was a great idea. I felt better and I looked normal when I got home.

I planned my Chemo treatments for Monday mornings so that the days I might be the sickest would be days my daughter was at school and her exposure to it would be the least. Our goal was to strive for normalcy. I think we achieved a level of normalcy that was acceptable. Unfortunately, after my first course of Chemo I got an infection which delayed my next course by four days which meant treatments were now on Thursday and my worst days were on the weekend and Sarah got to see me at my sickest. This was a huge disappointment but you do what you have to.

After Chemo started I still picked Sarah up at school everyday. As my hair began to loosen up Sarah would tell the kids on the playground how it came out in chunks. She would have her friends pull out bits of my hair. Children are fascinated by the hair loss and I let them take bits out for two weeks until I shaved my head. The kids then took to rubbing my head. I have no idea why they enjoyed it so much.

The Neulasta injections I needed in order to have my Chemo had some bad side effects. I had severe bone pain for 2 to 3 days after the injection. For my family, where we all pile in the bed and snuggle together, this was devastating. To cope with the pain we had different types of days. No Hug Days for the 2 to 3 bad days. Small Hug Days for the next 2 days after the really bad ones and Big Hug Days for all the others. Sarah would ask "what kind of hug day is it?" On Big hug days we got in all our snuggles. The evening before an infusion was a big snuggle time.