June 3. 2013 – June 7. 2013

John Milton (English Poet) once wrote, “the mind is its own place for it can make a hell out of heaven and a heaven out of hell”. This is so true! Try to make this journey a beautiful one instead of an unpleasant and depressing one. I’m starting Cycle 2, I’m almost there. I looked at it this way, I know what to expect as side effects, and I have learnt ways to fight them, I know exactly what to eat, I faced my biggest worry (hair loss), so what’s there left to worry about? Absolutely nothing. The side effects might be better or worse, if they were better that’s good news for me, and if not, so what? You’ll just get more spoiled :). It’s just a matter of weeks and I’ll be better. Keep yourself entertained; don’t say to yourself “Oh I’m sick and tired, I can’t do anything”. That’s not the kind of thoughts you should be having. Be a fighter. That’s what I have been and still am. That voice that talks within me, I talk back to it. Sometimes, I notice myself staring at a wall and just talking to myself (silently). It’s funny. It’s like I’m fighting with myself internally, BUT my positive attitude always wins :). I did get my ups and downs, but my downs were really nothing. When I felt weak and tired, time was just slowly passing by, and I would look at parents and say: “Now what? I’m bored!” Dad and Mom would tell me, “it would be done before you know it, you are almost there.” My husband was visiting me during my cycles, so that was something to look forward to. Although I wished he could come during the time I was feeling better, but his presence did make me feel better, and he just loved playing with my hair, I mean my head :).

A couple of days before my 2nd cycle, I had a hearing test (as I mentioned before Cisplatin causes hearing loss); in my case, this test was done at the end of the 1st cycle so that my doctor can monitor my hearing (as I was experiencing clogged ears). The test is pretty interesting, and the nurse told me “your hearing can’t be any better”. That’s good news. A few days later, my husband & my Mom were in the kitchen whispering, not wanting me to hear what they are talking about, well guess what? I heard them!!! I said, “Hellooooo, I can hear you”. And of course Mom replied, “Good, we are testing your hearing ability.” Yeah right!! I just love her sense of humor. Anyway, on the first day of Cycle 2, I had my blood work done, my vital signs as usual, and a lung test. The reason they do a lung test at the beginning of every cycle is because Bleomycin affects your lung function and so you need to be monitored to make sure all is well. The first couple of days were going well, I would have an apple every morning (it basically helped with my nausea). I, by now, know what to eat and what to avoid. Also, writing everything in my logbook helped me a lot. I would open it every day and know what to expect. You really tend to forget what you went through during the 1st cycle, so keeping record of everything helps. On day 4, my doctor called me during my session and informed me that my diffusion capacity rate has declined by 20% and for this reason I will not be given Bleomycin anymore as he believes if I continued with it, I might, and most likely will, develop a disorder. BUT, 3 cycles of BEP are equivalent to 4 cycles of EP so I may need a 4th cycle, but that’s not confirmed yet. He will be discussing this with a team of oncologists to come up with a final decision. They will basically wait until I am done with my 3rd cycle to see how I am feeling and make a decision then. That’s what I like about this center. They work as a team. You just feel you’re in good hands at MSK and so you really have not much to worry about.

I was lucky during this cycle that my side effects were not as bad as the 1st cycle, although I did experience new ones. Fatigue and nausea were less; although I still felt so weak to the extent that I can’t open a bottle of water, nor push a door. I just felt the need to exert a lot of energy to do that so I might as well save that energy for something else. The new side effects that I experienced were: brown spots on hands and feet, strong heart beat, tightness in the chest, and chemo brain. I’m sure you’re probably wondering what chemo brain is; it’s a term they use when you are feeling sluggish, unable to focus or concentrate, have a short memory span, unable to multi-task, thinking slower, and having trouble remembering common words. Yes, you feel stupid! When I shared with my doctor what I was feeling and he told me this is known as chemo brain. I just felt stupid. I went back home and said to myself “No I will not let this decrease my IQ”. I started playing every night SUDOKU, as it is known to have a positive effect on the brain’s memory performance. I must admit I used to play the “hard” level and finish it in max 15-20 minutes, now I am not even able to finish it. But that’s okay, I am practicing with the “medium” level and I am doing pretty well, 10 minutes :). What’s funny is that when my Mom started noticing that I am forgetting a lot, she started testing my memory everyday. She was worried. Memory loss didn’t seem to me a big issue. I just thought maybe I am not being able to focus because of the fatigue. Well it turns out that these medications do have an effect. Fortunately, this effect is reversible. It might take a while to recover back to normal brain activity (around 4 months) but that’s okay; try to exercise your memory.

June 10. 2013 a day I will NEVER forget! I was taking a nap in the afternoon and I open my eyes and see “someone” just sitting on my bed. I open and close my eyes like 10 times not believing what I am seeing. I look at my mom and husband and say, “Please I need water”. I really did not believe who was on my bed. It was my cousin Tarek!!!! He came all the way to New York to surprise me :). I was soooo ecstatic! Thank God it was few days after the worst days of my side effects or else I would have definitely had a heart attack. It was one of the most touching events in my life. It really meant a lot to me, and I’ve always considered him as my older brother and well it was touching to know how much someone could really care about you. All my energy was restored! We spent the next 4 days doing so many activities! It was GREAT!

The phase between Cycle 2 and Cycle 3 was so eventful. When Tarek left, my mother-in-law came :). She is an amazing woman, very caring and thoughtful. I was really happy to see her and spend time with her; her visit meant a lot. Well not having Bleomycin sessions anymore turned out to my advantage; I had enough time to rest and have energy to be able to enjoy my time, and that’s exactly what I did.


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