Chapter 14 - August 2003 -The School Year Begins

Chapter 14 - August 2003 - The School Year Begins

We have yet to go school shopping, a tradition my children love. They like buying backpacks, shoes, socks; you name it, if it's new they like it, even school uniforms.

This year Alex will be a freshman in High School, Katie will be in seventh grade, the Junior High years, and Frankie will be in the fourth grade. Living with the fear of losing a parent isn't something these young kids should have to think about. They have grown-up a lot over the past few months. Alex tried out for the freshman volleyball team and made it. She felt guilty because she prayed to make the team when in her mind she should have prayed for me to get well. I told her that one prayer doesn't cancel out the other.

My illness has changed all of my kids. Alex deals with it by trying to be as good as she can. Katie doesn't like to think about it or talk about it; she has begun to keep her feelings even closer to her vest, because what she feels just hurts too much. And Frankie clings to me like glue for fear of losing me. This illness will be paramount in shaping their lives. Alex carries the fear that she'll have to be mother to her two younger siblings, Katie, thinking she's the strongest one, also feels like she is going to have to be the rock for everyone if something happens to me. And Frankie is already showing signs of separation anxiety. I pray that I can be here long enough to raise them.

School starts in a few days for me as well. I have been working on an Associates of Applied Science Degree. I have just two classes left; one of them is a group exercise class which means it will be a physical class. I'm fearful about my energy level because of chemo and my ability to participate in the class, but I want this degree whether I use it or not. I've resolved myself to just doing it.

At the beginning of a school year there has always been excitement in the air, whether for me or for my children. It is the start of something fresh. I like schedules, and organization, school or work fit that bill. As a child I didn't see many friends over the summer so the new school year meant seeing old friends and perhaps meeting new ones. The end of summer soon leads to the beginning of the fall with football games, crisp sunny weather and leaves turning all sorts of beautiful, brilliant colors. This time of year brings back many wonderful memories for me. Now I wonder how many more times I will witness the fall of a year or see my kids off to school. My daily prayer starts with the request to get them all graduated from high school. I know I say that a lot, but in my opinion you have to state what you want over and over and over again and keep it in the forefront of your mind to realize it.

Today we have a mandatory parent, back to school meeting. I'm feeling apprehensive about going because of the scarf I'm wearing. I feel conspicuous. People stare at me in sadness or shock or in confusion about what to say and do. I still have the $1,000 wig from my original Breast Cancer, but it is hot, uncomfortable and awkward to wear. I wore it about ten times because it is adhered to the head with double stick tape which created a hassle when putting it on, and when you sweat there is nothing to stop the perspiration so it drips down your forehead. Not to mention, I look like Joan Collins on a bad day in it.

Harm is not meant by the stares, it's just unusual to see someone in a scarf. When I meet a person's staring eyes they quickly look away. Generally, I try to make people feel comfortable around me by pointing out the obvious, or making a joke, but that behavior, even though it is all me, is tiring and I don't have the energy. I continually try not to care so much about what others may or may not think of me.

Losing one's hair through chemo is one of the many difficult aspects of this disease. Your hair frames your face. It has a personality of its own. Eyebrows and eyelashes also come in handy to complete your look. When you don't have these things people know immediately that you are sick. It is hard to hide behind the "look" of chemo. However, I do try with make-up. The other day I was putting on mascara but my lids kept getting black. I looked closer in the mirror and realized I only had one eyelash left. I decided to spruce it up with a little mascara. If I ever write a book I may title it; I had one eyelash left, but it still had mascara on it. Remember, humor is a necessary ingredient to my survival.

Chemo can save your life so you put up with it. Some chemo is worse than others. My current chemo is the most difficult to date. As I've stated, food has lost its taste. The Macrobiotic diet is gone and has been replaced by Ramon Noodles, baby food and Swiss Miss Pudding, the only things that my mouth, full of sores, can tolerate.

My weight loss is getting more noticeable. I look like a refugee from a concentration camp. Forcing myself to eat is a daily grind and I can only eat until my hunger is somewhat satisfied, partly because it is a painful process and partly because I have try to maintain my weight. This convinces me that eating, dieting, having to eat, is all a mind game. When I was young and overweight, trying to diet, all I could think about was food and how much I wanted it. Now, I know I have to eat to keep my weight up and it is the last thing I want to do.

When I had the original breast cancer I knew I would be on chemo for a short period of time. My Doctor is telling me now that I'll probably be on some form of chemo for the rest of my life. Is this how I'm going to feel all the time? If so, my life's quality will be diminished. This is the time that I need to get my mind around how to survive. It is much more difficult to fight for your life when you feel like crap most of the time, so right now I'm doing it for my loved ones.

My first thought is to live for my children and husband. If I can stay alive for them, I'll eventually be able to stay alive for me, I'll find a way. I keep the thought in my mind that there are other chemo therapies out there. There are advances in medicine all of the time. If this one gets too bad, I'll try another. There is always hope.

Keeping my head held high, whether I feel like it or not, is imperative to me. Everyone around me feels more confident about my survival, which puts them at ease and it makes me feel better as well. Being strong in this fight is not just a show for my loved ones. A thought is a precursor to an action. Therefore, positive, strong thoughts create positive, confident actions. This is my motto.

Today I have another round of chemo and an appointment with my Oncologist. We discuss the less than positive side effects of the drugs. He tells me that I need to stay on the chemo as long as it shrinks the tumor, if it stops doing that, he'll put me on a hormone therapy. In addition to my mouth sores, my nails are separating from their beds and they smell, really bad. I told one of my sisters that my nails were dying and she informed me that nails are already dead. I told her that they were deader now. My eyes are also watering constantly so I have to bring my fingers with my dead, stinky nails to my eyes to dab them with a Kleenex. So Gross!

The only good thing I found from this condition was getting out of a moving violation from my friendly neighborhood Police Officer. I was in a hurry and little lost. In my confusion, I didn't make a complete stop at a stop sign. He pulled me over, he was a young fellow, and slowly walked up to my van. When he got to my window, he took one look at my scarf, my watering eyes and my dead nails, got a look of shock and pity on his face, and said, "miss, are you aware that you made a rolling stop back there at that stop sign?" I replied, "I realized it when I saw you driving after me." He told me, in an, oh so polite manner, to be more careful next time and sent me on my way. Chalk one up for the cancer card.

Advice
A serious illness will change the dynamics of a family; do the best that you can to acknowledge this by keeping all lines of communication and love open, this will help.
Chemo is a tough pill to swallow, realize that there are different medicines out there that may be better suited for you. Talk with your Doctor.
Hold onto anything positive that you can to get you through the roughest patches. There is always a light at the end of the tunnel.
Find the humor in your situation because it is there. It all depends upon how you look at things.