Tuesday, April 26, 2016

From Anger to Appreciation to Depression to Love

Any cancer diagnosis is bound to make a person sad and most of all angry.  My diagnosis had me wrapped up in every emotion imaginable for the first 2 months.  After the initial shock wears off you feel like SuperWoman and ready to fight this disease and then 2 minutes later, you're crying your eyes out angry at the world because you are the one that has to battle cancer.  I would be driving in the car and see families out walking their dog and it would literally make me angry, all I could think was I have cancer, they do not, they are happy, I am not and I felt like it wasn't fair, still do.

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


Monday, April 25, 2016

How did I get here?

My life has pretty much always been a whirlwind.  I've never had that calm, secure life as a young adult. So when my life was looking up and I was finally happy, I never questioned it, I was enjoying it. I got re-married in June 2015 and had settled into a wonderful life with the two loves of my life, my daughter, Kaela, who just today, turned 13 and my husband Jonathan. I felt pretty much untouchable, life was good, I was happy, Kaela was excelling in school and stress was limited.



When December 2015 rolled around, it was a busy time, we were preparing for the holidays and I had seemed to come down with a cough, it was light at first, and yes, I was a smoker, smoked half a pack of cigarettes a day for the past 15 years, but had planned on quitting for New Years.  I just thought it was a cough and pretty much ignored it through the holidays.  We traveled to Vegas for New Years where it started to get worse.  I began to feel a heaviness in my right side of my chest and it was very concerning.  Googling symptoms didn't help, but bronchitis seemed to be the likely culprit.  Once we returned from Vegas, I quit smoking and went to Urgent Care, the Dr diagnosed me with bronchitis, put me on steroids and an inhaler and sent me on my way.  During the month of January, the symptoms got worse, my cough got worse, my chest ached a lot so I went back to a different Urgent Care, they did an X-ray and the Doctor stated I had Pneumonia even though I never had a fever.  Okay, well, let's take these antibiotics and knock this out of my system.  Except, it never went away, it got worse, the pain got worse, I would be in tears at times and it was scary.  At times I felt like it was better, then the next day it would be the same.  I went back the day before Valentine's Day to get another X-Ray done at the request of my Primary Care Doctor to make sure the Pneumonia was clearing up.  The Doctor stated it wasn't and in fact, looked a bit worse and after running some tests thought I might have a blood clot in my lung and she sent me to the Emergency Room.

The Emergency Room was depressing and after an X-Ray and a Cat Scan, the ER Doctor basically stated to me, you have lung cancer, here are some anxiety meds, pain meds, I have set you up for an appointment on Monday with an Oncologist, have a good night.  WOW!  You see, my grandfather passed from Lung Cancer and it was pretty quick, less then a year from diagnosis to death, so that was all that was in my head, I am going to die in less then a year.  I knew smoking was a bad choice of extra curricular activities, however, it was hard to quit.  What I didn't know is that down the road I would find out that smoking had nothing to do with my diagnosis - an even more shocking factor!

I told my mom what the ER doctor said, she was in shock and disbelief.  Jon and I went to the drug store to fill the prescriptions and we were both in shock. I remember sitting in the car in a fog, not really realizing it was real.  After that, I cried, and I cried and I cried so more.  I couldn't eat, I couldn't focus and I really just could not think clearly.  The only person I could think about was my daughter, how was I going to tell her, how am I going to deal with dying in less then a year? Kaela was with her father that weekend and although she knew of my urgent care visits and going to the hospital, I did not tell her everything immediately, because I needed to know more. All I could think about was why me? Why now? Why when everything was good, I was sooooo happy, life was positive for once, why was I being put through this?

Jon, my mom and I met with an Oncologist the next week who looked at my scans and saw inflamed lymph nodes in addition to whatever was in my lung and she stated Top 5 guesses of mine are all Lymphoma. This was a more positive possibility as Lymphoma in early stages is pretty easy to beat.  We then went to visit with the Thoracic Surgeon who stated he didn't even know if it was cancer after looking at my scans and stated it could just be an infectious disease.  We scheduled a biopsy to see what was going on.  My biopsy took place the next week and let me tell you, patience is not one of my strong points.  I was in pain as my lymph nodes were swollen so sitting up hurt, my lung hurt, my shoulder hurt, my back hurt, headaches constantly, life was just miserable, I couldn't sleep, and barely ate a meal a day.

The thoracic surgeon conducted a biopsy and the results were inconclusive from the day of the surgery, but they sent it for further testing to find out what was going on.  It gave me a glimpse of hope was the surgeon stated he couldn't state it was cancer or not.  The results came back and we went for our appointment to get the results.  Stage 4 Adenocarcinoma of the Lung with mets to the bones and further testing of an MRI showed 3 very small spots in the brain.  I broke down, literally, I couldn't even look at the scans and how the Oncologist was showing us where the disease was.  It was all a blur. I met with a Cancer Patient Navigator, her name is Brenda and as nice as she was trying to be, I was in shock and wasn't even paying attention to any word that she was saying, but in a nutshell, she was my go to person, she was there for me, for anything I needed.  One of the things I do remember the Oncologist stating was that they were going to take more blood and sent my biopsy for genetic mutation testing, because this stage of Lung Cancer for someone of my age is very uncommon, and that there are great treatments if indeed I did have a genetic mutation. Genetic mutations make it more likely for someone to develop cancer and my Oncologist believed that since I had this late Stage cancer, that genetic mutation was probably the reason behind it. At the time, I didn't understand it all, but down the road, it had a direct effect on my future.



I told Kaela that night. It was not something I wanted to do, but I knew I had to do it.  No parent ever wants to tell their child that they have cancer and don't know how long they have to live.  It was the most heartbreaking and sad moment I have ever had with my daughter and I've been through a divorce with her father so imagine that times a million.  Trying to be positive is hard when there are so many unknowns. All I wanted to do was hold Kaela in my arms and tell her everything would be ok, but I couldn't say that, because that would be a lie.  So all I could do was promise her that I would fight this, with every bone in my body.   I vowed to travel as much as possible with her, to start writing a book for her, to do everything I could as soon as possible because life is short.





My husband took this hard as expected.  We were just married in June and less then 9 months later I get diagnosed with Stage 4 Cancer, not exactly the honeymoon year we were looking forward to.  My husband is that man that wants to fix everything for me, he will do anything for me, at a moments notice and for him to not be able to fix this was devastating.  I just wanted to us to be happy for once, we both had rough previous marriages and we were eachother's happy place.  He was stressed to the max, he couldn't sleep and was constantly worrying about me and how I was holding up both mentally and physically.  I love the man more than words could ever describe so knowing that our dreams of growing old together and moving to an island in the Caribbean were not going to ever come to fruition, completely broke my heart.   We love to travel and that was thrown out of the window when I was diagnosed.  Would we ever be able to get to Mexico like we planned for June 2016? It didn't look likely as of then.  No one tells you how to handle this, they tell you there are counselors, but is there ever a right way to grieve this diagnosis with your loved ones? If there is, we haven't found it yet!



The Genetic mutation profiling came back, my phone rang downstairs after 9pm one night, Kaela and I were upstairs talking and laying in my bed.  Jon was downstairs on the phone with work, he missed the call on my phone, then got a call on his phone, same number, but he missed it as well as he couldn't get off his call in time.  Then again, my phone rang again, he answered it and it was Brenda, my Cancer Navigator. I couldn't understand why she was calling so late at night and it had me worried but she called with good news, I had EGFR (Epidermal Growth Factor Receptor) positive genetic mutation, which was a positive sign, it enabled me to take targeted therapy for my cancer instead of relying on normal chemotherapy and radiation. The mutation is a Catch 22 sort of thing, it is what brought on this Cancer, however it is also what can keep me alive longer and able to try all of the targeted therapy treatments that are working so well now.  The news brought tears to my eyes and for the first time in months, I felt some relief. I literally cried and hugged Kaela and Jon.  Although I still had Stage 4 Lung Cancer, I was able to get prescribed a pill called Tarceva, an oral chemotherapy pill.  This treatment has had great trials and many people have lived years upon years on this pill.  Brenda stated they are doing the paperwork and will get the drug to me as soon as possible.  It was a relief, but I was still in pain and because I am not a big pill person, I never asked for more pain meds, until I couldn't sleep at all.  Brenda explained I needed to take Hydrocodone like clockwork every 6 hours for the pain, so that is what I did and it helped immensely.  The next chapter of my life was going to begin that first day I took Tarceva and as much research as I did on the pill and it's side effects, I was still no where near prepared for what I was about to go through...