I spent the whole 20 mins with Dr. Patel today. Im really struggling with the fact that I’m 38 with lung cancer. We talked a bit about mental health and she is going to refer me to someone to talk more in depth about these feelings. It’s just heavy. It will be 8 years since I was diagnosed in April and I feel like it is just now sinking in and to put it bluntly I’m angry. I’m grateful that I get to take a pill to control the cancer because I know so many do not get that option but I’m angry that at 38 I take 12+ pills a day. With that comes with making sure all pills are covered under insurance and then dealing with the pharmacy to fill them. It’s draining. We talked a little bit about work (probably more than I should have) and how they have been accommodating by letting me work from home which she was happy to hear. Not everyone at work knows I have cancer (my choice) and so I get the “you’re so lucky” comments. But honestly there is nothing lucky about this. It sucks. I was supposed to have scans in November and I pushed them back because I didn’t want to use my last vacation day on scans. And I told her that. She is either going to help me get approved to use FMLA or start having me get scans on Saturdays and then use telehealth for the results. After my appointment I felt like I had just been given chemo. I felt awful! I thought it was because I had not eaten but I think it was that new barium drink. My head hurt and when I did eventually eat, sorry TMI, I ended up puking it up in the side of interstate 57. I’m ready to get back to my day to day life and not worrying about scans for another few months.
The holy grail of medicines
If you haven’t been unfortunately thrown into the world that is lung cancer (like my family and I have) then this article may not be of much interest to you BUT this drug that they are talking about was my holy grail of medicines so to speak.
I have talked about this in a few different places but when I was diagnosed I didn’t realize that the expectation was to get TIME out of each treatment. I failed tx after tx in the beginning and thought that was the norm. I started on a second clinical trial with not much hope and by the end of it,… it still seemed bleak. I developed some pretty severe neuropathy with which I still suffer from to this day. My hands constantly feel dry making flipping thru papers painful or even gripping the steering wheel as I drive gives me cramps. I had to have physical therapy on my feet to get to walk “normal” again.
I was out of the trial and my oncologist kept me on the dual drug (which is the tx I’m still on). She then almost two years later told me I was considered NED. Non cancer folks – that means no evidence of disease, the best you can get when you are stage four. Our version of remission that you always hear about in the movies.
And that is where I sit today. I will have my routine scan on January 20th and if anyone is keeping track that is a whole 8 months since my last scan. Call me crazy but I just didn’t want to go in for scans on November.
If you would so kindly as to offer up any sort of happy juju, vibes, prayers or anything else you can muster so that I can remain NED that would be grand.
I’ve been out of the loop
I feel like I have been out of the loop when it comes to the lung cancer community. When I was diagnosed I jumped in head first and learned everything about the disease. Mainly that there are a lot of different types of the disease that many people just label as lung cancer.
I realized though that the main reason that I can be “out of the loop” is because of some pretty significant research and advocacy, more than likely from people who are no longer with us. I have participated in two clinical trials myself. The second trial I was in was the golden nugget and I was deemed NED. I still have cancer and I still see my oncologist every 3-4 months but in between those visits I get to live.
I work full time and if you have ever talked to me you know I kinda like my job. It pays the bills and I get some pretty decent health insurance. I started saving into a 401k and I think that’s a BIG deal! It does not escape me that not every lung cancer patient is like me. I posted on my Instagram a picture of a unicorn that said “I am a lung cancer unicorn”. I know a bunch of people who have lived longer with lung cancer but I know far too many more that didn’t get to this point.
This is my proof that research is needed so that everyone else can be like me. And also so that in the future I will not hear the word, progression.
Please support the LUNGevity foundation, Go2 foundation and lung cancer foundation of America.
We are all in this together.
It’s been a minute since I updated my blog but it’s only because I am truly living life.
I have my quarterly scans on Thursday and the scanxiety is creeping up on me.
I feel great so there is no reason for me to be concerned. Except the last time I had progression I didn’t have any symptoms so that weighs heavy on me.
I will make another update to my blog after scans to let you all know how it went.
I appreciate all happy vibes and prayers.
Writing prompt 4.21.2020
Write about a recent time you were really happy
My most recent happy moment was during the quarantine. I had worked all day from home and Robert was there because it was his day off. He has a crazy work schedule right now. We were gifted a patio table and chairs from a friend and we were able to finally put it outside. I cooked dinner, I don’t remember what it was now but we sat down and ate. It was really one of the first nice weather days emerging after winter. We enjoyed one of the bottles of wine that I hard ordered from Round Bard. Side note: that is the winery that Andrew Mcmahon played at and it got cancelled about 2/3 of the way thru due to weather. We finished the night off sitting outside until it got to be too cold. I think I like that memory so much because it shows how far we have come since I was diagnosed with lung cancer. We have our own little part of the world and it is nice. We had the dogs outside with us, out little family.
Writing prompt 4.14.2020
“Make a list of what brings you peace”
Sometimes I have a hard time coming up with things to write about in my blog. I love getting my cancer story out into the world and I’ve explained this before. I want someone newly diagnosed to not feel as alone as I felt when I was diagnosed. I am going to start doing the writing prompts from Lacuna loft. Writing is supposed to be for 5 minutes, we will see where this takes us!
Things that bring me peace include my normal life. Getting up for work during the week and having the weekends free. Planning for the future gives me peace. I always have a running list of things I want to accomplish. This year I would like to get a car so that I can give my mom her car back to her. I would like to start my own small business as well as get my podcast up and running. I would like to continue my lung cancer advocacy. I have started a website with an advocacy resume so to speak. I am currently researching ways to bring bees, butterflies, and dragonflies into my yard. I am also looking into patio gardening. My sister gave me the idea to make a “salsa garden” so I’m working on that. I would also like to someday acquire a small RV, whether a pull behind or a class b camper van.
I’ll be back as soon as time allows…
The social distancing and #quarantine life wasn’t so bad today. We got up early and had breakfast from the neighborhood kitchen. You know the people from the Kankakee farmers market that have the most delicious egg rolls? Well, they decided to treat us last week and sell by the dozen, our favorites. I got myself the pam, which is pickle and ham and for Robert we got grady, which is biscuits and gravy.
After breakfast, we headed outside. It was nice out! Robert set up the grill and I worked on my patio garden. I was able to plant some flowers and onions. I will work on the rest of the plants once we go to the greenhouse. We had the pups outside with us. Ruru gets to run free but Rizzo stays on a leash or he will run!
A lot of sun and fresh air but it got chilly so we are sitting inside about to eat frozen pizza for dinner.
Its been a whole six years
Today I celebrated my sixth cancerversary in quarantine. Well kind of. We had planned on bringing Robert lunch from Buona beef but because of time constraints, we ended up getting him Pops beef instead. It’s right by his work. We then got Buona beef for ourselves lol. After that, we had planned on breaking quarantine and going to Costco. I know its usually busy on a Saturday but then add in that they are limiting the number of people in the store? It was nuts. The line was wrapped around the building and you know how big that building is! We made a hard pass and headed home. Mom helped me sew buttons on headbands that will later be donated to St. Marys, Citadel and other local places that need them. We then went through some boxes in my office and we didn’t make too much of a dent but we threw out a bag of stuff and got some items for a yard sale. That’s a win! Robert got home from work at 7 and I cooked the three of us breakfast for dinner. I think it came out Yummy! All in all my cancerversary was superb! Even though Robert had to work I am glad my mom kept me company. The past six years have been very tough and I do not want my rose-colored version to make it seem like it hasn’t been. I have learned a lot along the way and I hope to share some of this with anyone who will listen. Here are a few things that I have compiled about being diagnosed with stage IV cancer at an early age:
- Be selfish in the beginning but then make up for it later on
- Eat when you can because you never know when you will lose your appetite or have constant nausea
- Let someone else do the “google” searches
- Only change your diet if it is something that you truly want to do
- You know your body the best, if something feels off, tell someone (preferably your oncologist)
- Eat the ice cream, or in my case drink the mountain dew
- Take pictures of the things you want to remember or if you don’t want to remember don’t take pictures (I took 0 pictures in Boston, it was something that I did NOT want to remember)
- Always know where the closest bathroom is, just in case, and on that note have spare clothes handy
- Reach out to your friends and make new ones, people going through the same things as you will be what pulls you through
- Have a furry friend (or 2!) to confide in
- Figure out how to live each day in the moment (this one can be tough)
- Nap when you need to but make sure you are keeping your lungs moving and stay active, the best cure for fatigue is to keep moving
- Take your pills at the same time every day and keep a diary if you tend to forget to take them or forget if you took them and try to take them again (been there!)
- On that note order your pills with enough time in case the mail is delayed
- Apply for financial aid through your hospital, CANCER. IS. NOT. CHEAP.
- Seek out good counseling (I have yet to do this but know I would benefit from it greatly!)
- If you have to have cancer you might as well reap the cash benefits from it, sign up for focus groups! I have made as little as a $25 amazon card to as much as $2k.
- Be. Your. Best. Advocate! This is for you but then also advocate for others.
- Do not take anything for granted: People, time, and the closest bathroom
Please let me know what you have learned from your diagnosis in the comments or if you related to any that I have mentioned.
My take on Covid-19
As you are fully aware, we are in the midst of a full-on pandemic. In this age of information at our fingertips, there has been so much good information but also a lot of bad information going around. While I will not try to decipher which is which in this post I want to encourage you to use common sense.
There is a post going around and I have seen 2 of my 600 Facebook friends share. The basis is that they do not know anyone personally with coronavirus so mainstream media is blowing this out of proportion. This is not a joke and to someone who has compromised lungs, I need all hands on deck. Washed, of course!
If you have ever read any of my other posts or know me personally then you know that I was diagnosed with non-small cell lung cancer at 30 years old. I am by the grace of God 36 years old and going on my 6th cancerversary in April 2020.
I consider myself an extroverted introvert. I quietly like to be around people. Since moving into my house in October of 2019 I have not stayed indoors a full day once. I am always out and about whether that is to the grocery store or just to work, I love being around people. This is where my life is going to change. I have stocked up on 30 days of supplies and will start working from home on Monday, March 16th, 2020.
To stop the spread of this rapidly moving virus I plead with you to take these precautions as well. For some of us, it is life or death. I have battled pneumonia once and I do not want to take on that beast again.
For those of you who cannot work from home (ie my husband), please use extreme caution when around others. Keep at least a 6-foot distance and stay away from those who are sick. And for the love of God PLEASE wash your hands! If you find that you are the one that is sick please stay home.
In closing, I have not lived with lung cancer for almost 6 years to be taken out by a virus.
Is there such thing as a “lung cancer influencer”?
As I am sitting here I am listening to a podcast that is very uplifting and just gets me all sorts of pumped. It ranges from topic to topic but it focuses mainly on how to market yourself and get your name out. How to make money online to live the life you wish, when and where YOU want to.
So it got me thinking, I know we call ourselves “lung cancer advocates” but what if we also called ourselves “lung cancer influencers”?
What exactly is an “influencer”?
Now this is just me thinking out loud so to speak so I haven’t done the leg work and researched this. And by no means am I “up with the times”. I feel this can get our faces out there and tell people this is a BIG deal. I mean for most of us this is life or death.
I say it all the time. I wish I could have met someone like me when I was diagnosed and I TRY so hard to be that person to those newly diagnosed.
I hear by announce that I will be called a “lung cancer influencer”!
Thank you for coming to my TED talk.