May 13. 2013 – May 17. 2013, May 24. 2013, May 31. 2013
Walking to the center, all sort of thoughts start running through my head. What’s going to happen after today’s session? How will I feel? Will I be able to walk? Will I be able to go shopping? Eat? Will I start noticing any physical changes? Will the side effects start to kick in right away?
As I sit in the waiting area for the nurses to call me in, I look around and see all the other cancer patients. That’s when the idea really starts to kick in. I start noticing how most have lost their hair. Then I see myself touching my hair and think, “will I really lose it one day?”. I just could not believe it; that was my MAJOR concern. Okay the side effects I was told about will be difficult, but eventually I will start feeling better, it’s a matter of weeks, or maybe few months. But once I lose my hair, it’ll take quite a long time for it to grow back to a reasonable length. I really did not know how I would handle my “hair loss”. That’s all I could think of.
I was keeping most of my feelings bottled up, trying not to share my worries with anyone. I did not want to worry my parents, nor my husband. I just wanted them to believe I was fine, so they can be fine. Seeing them in pain is just too much for me to handle. I would share few of my worries with my close friends (and by the way, during this time, you really know who truly cares for you), and it helps. It’s good to speak out your feelings and thoughts (to the right people of course), and the motivation you get and the morale boosters you get from your friends really help. My sister would always ask me questions to trigger me to speak out my feelings (Yes, she’s smart!); I would share few things with her to show her that I am sharing but again just a few, not wanting to worry her (Oops, I’m smarter :)). My husband, who also knew very well how to handle this, was showing me that he is fully confident that I am and would be fine, and was always cheerful, and this made me handle things better. Having supportive, strong and cheerful people around you, makes you even stronger. It’s really important how you hit the road because your psychological aspect plays a role in your treatment. I must admit, I did cry on the first day in that waiting area, but that was it !!! The reason I cried is because that’s when the idea really kicked in, and I felt I was the only young person in that room; I felt and I WAS !!!! It was an isolated feeling.
After having your blood work & vital signs taken, you wait again until your medications are ready. Once they call you in, you walk into the chemotherapy suite, you sit in your room, and the process begins. The nurse introduces herself and gives you an overview of the medications. She starts looking for a “good” vein for the IV, and there you go, the needle is in. They usually start by hydrating you (for like an hour), then each medication at a time follows, then hydration again. Every time the nurse walks in, I would ask her: are the chemo medications in now? Are they in my body? I was just so nervous. I would look at my body and would say to myself: the bad stuff is starting to kill me from the inside. Well I mean its normal to think like that. I was really nervous (but of course trying not to show it) about what is going to happen to my body, what symptoms will I experience, how will I tolerate them and when will they start to appear. The doctors can’t really tell you how your body will react to the chemo medications, each body reacts differently. I thought that I looked fine, and was convincing myself that I was fine, and the nurse even asked me “Do you want to take anti-anxiety medication?”, and I said, “Why? I’m fine”, she replies, “well you don’t look fine”. And of course, I did not accept to take the medication because I just did not want to believe I was anxious; well I was anxious, very anxious but in denial. The whole process takes about 4 hours. The medications don’t look evil at all, they look just like water. This is just too frustrating. You’re looking at the medications and they look so pure, yet they are pretty harmful. They have a double-edged sword; they kill you yet, they treat you. But again, your strength and confidence will just kill them back. Try to keep yourself entertained during those 4 hours. I always had 2 people with me; my mother would always make me laugh (my brother refers to her as the family clown), my father & husband made me smile by just being there, and my sister doing her research on what I should and should not eat, preparing questions for the doctor, and basically just taking care of my medical file (I can’t ask for a better & more caring sister). I thought I would be able to read a book during the sessions, but day after day, I was getting tired and was not able to focus, and didn’t have the energy to make an effort. I figured the best entertainment is to watch series. I downloaded “Revenge” and was watching it almost everyday during my sessions (Thanks Tarek for the addiction :)).
The same process continues for the next 5 days (Monday through Friday); Bleomycin is introduced on Friday. The duration of the session doesn’t change much; the Bleomycin only takes around 15 minutes. The first few days, you will not feel any changes, not until day 4. That’s when the medications would have started to accumulate. Although you’re stuffed with anti-nausea medications, you still feel nauseous. The side-effects I was experiencing were mainly: nausea, fatigue, shortness of breath, loss of appetite, pain in left shoulder, difficulty swallowing water, tingling fingers, headache, and clogged ears. I did not get all of these side effects in one day, NO! A new symptom(s) would appear almost everyday. Basically, day 4 through day 9 are the days where you really need to rest; most, if not all, side-effects are present during this time. So you really need to listen to your body and rest. Basically, the Bleomycin was causing me headaches, tingling fingers, and shortness of breath. Clogged ears were caused by Cisplatin, and Etoposide causes hair loss (Ugh!!). Everyday, after each session, I would come back home, have lunch and sleep. Taking a nap in the afternoon was an energy-booster for me. I would take a 2 hour nap, wake up and have fruits and then would go for an hour walk (if I am able to). Do not force yourself to do something if you are incapable of doing it. I enjoyed my walks; I would go to Central Park, get some fresh air, or go shopping (that was the most effective medication :)).
Few tips: 1) Ask for a copy of your vitals signs everyday (it’s good to have a copy of them to monitor your weight, and blood pressure); 2) Get a log book and keep record of the following: a) the medications you take, the time you take them, b) any sort of side-effects you experience [fatigue, nauseous, …], c) bowel movement, d) what you had for breakfast, lunch, and dinner; 3) Whenever you have a question, write it down immediately (so you don’t forget it later on), and if it’s something that’s worrying you, call your doctor right away. 4) Rinse your mouth with a mixture of water and salt around 3-4 times daily; this reduces the chances of getting mouth sores.
It took me just a few days to really grasp what is going on at the moment in my life, and I felt emotionally great. I really did. I think no one was believing me, and I think I shocked my family, but I was really doing fine. I have accepted the fact that I was undergoing chemotherapy, I have accepted the side effects that come along with chemotherapy, but I was still unsure of my reaction to hair loss. During my first visit with the doctor, he told me about a girl who had the same type of cancer, she is around my age, and recommended that I meet up with her. He thought talking to her would ease my worries and would be a means to assure me that I will eventually be fine and lead a normal lifestyle. I got in touch with her, and we decided to meet up on May 29th. Now on May 25th, that’s when I started losing my hair. I was brushing my hair and baaammm !!! A big chunk of hair was on the brush!! Called Mom to show her and said, “Oops, I’ll miss you”. Mom starts singing, “Good bye my love Good bye …” (a popular song back in her time by Demis Roussos), and that made me laugh. I was always wondering, how will I lose it? Will I gradually lose it or just wake up one day and find it gone? Well, basically, it starts to gradually fall off. Yes, you try to think of ways to prevent that from happening, but don’t bother! It will fall off, yes all of it! You wake up, with a couple of hair on the pillow, you shower and you notice hair falling, you brush your hair and a chunk of hair is stuck to the brush. It was pretty annoying. I just felt my hair was everywhere. On May 27th, I stopped brushing my hair thinking that maybe, maybe this will make it last longer. But for how long am I gonna keep it in a bun and not brush it? It was getting harder in the shower. Still, I refused to cut it. On May 29th, I met up with her. It was a pretty exciting experience. She’s a lovely girl, we have so much in common. We were actually born on the same day, May 23rd, and same year. Yes we were the same age; we had the same type of cancer, and even the same Grade!! We shared our experiences; I asked her lots of questions about things that she experienced during chemotherapy, and post-chemotherapy. Talking to her was really helpful and informative. And of course, we talked about hair loss. She advised me to shave my head; she didn’t do that but wished she did. I gave it a lot of thoughts that day, and thought that it would be less painful to shave my head than to see my long hair slowly fall off. It will fall off eventually, so why not just shave it? I wake up the next day and tell my Dad that I want to shave my head. Mom was in Boston visiting my brother, so I went to the hair dresser with my father (the hair dresser turned out to be half Lebanese :)) and I was ready to do it. I think Dad was more nervous than I was. He was afraid that I would really get hurt after I shave my head, and he wouldn’t be able to hide his feelings, and Mom wasn’t even there. Well it was a really fun and exciting experience. He started cutting my hair with scissors until it was really short then he used a razor (I told him I wanted it 1-inch long). I had a huge smile on my face because I really thought it was a fun experience, a new one! The moment my hair was becoming really short, Dad said “Wallah it looks great on you :)”. Well, it wasn’t as bad as I thought it would be. I left the hairdresser, took few pictures to send to my husband, sister, and brother, and then went to buy hats. As long as shopping is involved, I am fine :). Mom came the same day and I surprised her with my hair, and she said “yiii shou mahdumeh”. She liked it, and so did I. When my brother came to visit me, he would make a joke about it and would say “I’ve always wanted a brother”. There’s always a bright, positive side to every story!