The only bit of hope I had was my gene mutation and being able to take Tarceva, a targeted therapy chemotherapy pill. I really thought it was going to be easier then it was. I thought it's a pill, I don't have to go through actual chemo - so this should be a breeze. Then I started researching online the side effects, I read other cancer fighter's stories of their experience on Tarceva and it all scared me. A rash, especially on your face was almost guaranteed to occur and could occur the entire time I was on the pill. Diarrhea is a big side effect - great! Dry skin, another side effect, so much so, that you have to moisturize your entire body twice a day to keep it in check. I thought, I can handle this, I will keep my body lotioned up at all times and the rash should be minimal. Drinking water is also key in this side effect battle, so I drink 80 ounces of water a day, which is a task for me as I do not enjoy water at all, but I can definitely tell the difference when I am not hydrated and so can my skin!
The first week I took the pill - my symptoms vanished, my nagging cough disappeared, my pains were gone, my chest no longer hurt, my lymph nodes were no longer swollen and best of all, I could sleep! I thought, wow, this is great, I can do this! Then the worry that I was not going to get the rash kicked in. My Oncologist stated the worse the rash, the better the medicine was working. So the first week went by, no rash, then one day my face was pretty red - like I got a sunburn. I immediately went out with Kaela and Jon and bought some makeup - I don't normally wear anything but eyeliner and mascara but from my research I knew to buy some foundation for my rash so I could feel good about going out in public. The next day, the rash set in. I was no where near ready for it. It looked like I was a 12 year old pubescent boy...I had small whiteheads ALL over my face in addition to red splotches everywhere. It wasn't so bad at first, I thought I could get through it unscathed. I was wrong. It got worse as time went on and for a good 2 weeks, I was in a scary depression. No one likes to look in the mirror and hate what they see. My face itched, it was swollen, it was full of the rash, it didn't matter how much lotion, almond oil or coconut oil I put on it. I had to take Benedryl at night to sleep because my face itched so bad. But you know what kept me pushing? Kaela and Jon continued to tell me how beautiful I was and how temporary the rash was. Red face pic below!
I'll admit, I had days where I wanted to give up, I wanted to stop taking the pill. I was in so much misery, but the truth was, I wasn't in pain and that's what was important. I did have many breakdowns where I said forget this, I'm done, let the cancer kill me. It scared Jon to death and I can't blame him. I got in many fights with my mom because of my depression and I felt like a failure of a mother because I wasn't doing the normal things I did as a mom for Kaela. I couldn't function and it was eating me up inside. The rash spread to my chest and back. Finally just last week my face rash subsided some. As long as I keep lotion on my body, the rash isn't bad and is able to be covered by makeup and I look halfway decent! It's still there but not half as bad. I am now on my 2nd month of Tarceva and managing the side effects as best I can.
The funny thing about cancer is it brings out the worse and the best in people. To be able to manage both is a miracle, but I am getting pretty good at it. I have my days like yesterday when a little cough makes my anxiety go through the roof, or a pain I haven't had before makes me think the pill isn't working. This is my daily life and most likely all cancer fighters go through the same feelings. Any small thing and we worry about it non stop.
My Doctor's appointments have been good, I am going to Duke and have had a great experience with them so far. My Oncologist is positive that my first set of scans will be good and this makes me happy. I will have my first set of scans mid to late May to see how well the Tarceva is working. In a lot of people, it shrinks the tumors and kills the cancer cells. I will never be cured. But I hope to one day be something called NED which means No Evidence of Disease.
My relationships with my family have improved. I feel closer to my mother now then I ever have. Same goes for Jon. My relationship with Kaela is the one I treasure the most. She's a young teenager who doesn't deserve to see her mom go through this and the fact that she doesn't have a choice breaks my heart. The one good thing out of all of this is it is making our communication better. A lot of teens shut out their parents and although she wants to, I won't let her. We have a future full of fun things to do and see, traveling to do and just days of being silly that she is going to have to endure with me!
I returned to work last week after being out since late February. Being in the house worsened my depression. I have always worked my entire life since I was a teenager so not working for so long was different for me. I needed to get back in the real world, to get some social interaction and to get out in the fresh air. I'm tired sometimes, like this morning when getting out of bed was the last thing I wanted to do, but staying in the house is worse for me. I could file for disability and receive it based on my diagnosis but then I wouldn't have the good health insurance that I do through my job, and that is most important right now. I figured out the best thing for me mentally and physically is to live the life I was living before my diagnosis with some changes here and there.
It's funny because I get a lot of messages, texts and calls of friends/family wanting to visit and see me. If you google Lung cancer Stage 4, statistics show that 50% of those diagnosed with Stage 4 Lung Cancer die within a year. To educate you, those statistics are so outdated and no longer apply due to all the new developments in treatments. For my friends that think they need to come visit me asap because they think I won't be around for long, please know I will be around for a long time! I hope to be on Tarceva for a long time and after that there are more treatment options available for me including more targeted therapy. I do not look like I am sick, yes, I've lost 20 lbs thanks to the depression and appetite changes that Tarceva gave me in the beginning, but I haven't lost any more weight in the last few weeks and my appetite is coming back. So if you saw me on the street, you wouldn't even know I have cancer, let alone Stage 4. I feel good and I'm ready to enjoy life.
One thing I've learned from this is to really appreciate everything. Just the little things have a huge impact on me now. I told Kaela, don't get mad at me when we are shopping in a store and I just break out singing and dancing! Or when I just book a last minute trip because it's some place we always wanted to go to. Life is short, no one lives forever, cancer diagnosis or not! Money is here one day and gone the next. My Oncologist stated that once my first set of scans is in and looks good, I can travel and I cannot wait. Kaela has yet to go to New York, and we can drive there so I'm hoping to take her there for Memorial Day weekend. Jon and I are also hopefully going to Mexico in June as a belated Honeymoon. More traveling plans include Europe with Kaela and Florida to visit with my Grandmother.
I'm positive, most days, I still get angry, I still don't understand why me, I still get mad that I'm fighting this horrible disease, but I appreciate life more. I love harder and I enjoy more. To Kaela and Jon - I love you more then life itself, I thank you for putting up with me so far and I look forward to all of the fun times we are getting ready to have in the future!
Thank you all for your continued love and support. The calls, FB messages and texts are all appreciated, even though I don't always respond, please know I love you all. Below is our donation page, my medical bills are mounting, not all of my medical expenses are covered under my insurance so every donation counts! Thank you all who have donated already! <3
https://www.youcaring.com/nicole-russell-543263#.VvV3G_PDzhe.facebook
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