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.
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.
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.
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.
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.
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.
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”!
The last ten years have been quite the interesting ones for me. My social media footprint was just starting out and I really didn’t use it like I do now until about 2012. In that same year I met robert ❤️
In 2013 I started a new job at Court Street Ford and met some pretty amazing people.
In 2014 I was diagnosed with stage iiib (now iv) Lung cancer. Nothing else happened that year except, you know, me trying to stay alive.
In 2015 Denise and I vowed to travel as much as we could. We went to Ensenada on a cruise. This was of course around all the trips to Boston for the clinical trial I was in. The highlight of the year though was the birth of Wyatt.
In 2016 we continued traveling and Denise and I went to the Bahamas. Robert took me on a trip to see the cubs play in Cincinnati. We took a day trip (super fun!) to Texas and hung out with kathy and the kids. And of course the highlight of the year was that I went from Ms. to Mrs.
In 2017 we went on two cruises! A family cruise to the Bahamas and Denise and I went on warped rewind. I travelled solo to Washington DC and joined a group of lung cancer advocates and we “stormed the hill”.
In 2018 I did some more solo traveling by going to cancer con in Denver. Robert and I went to our first bulls game and I again traveled solo to California and met up with a few lung cancer ladies and we went to the stand up 2 cancer telecast. Highlight of the year was Weston was born. Lowlight of the year was that I lost my best bud, Deejay. We decided to bring Ruru into our family.
In 2019 we continued our cruising and seen Andrew McMahon in the wilderness on the rock boat. I got a new puppy and named him Rizzo. I was gifted tickets from Chris Draft to see the bears play in the playoffs and ultimately blow there chance at the super bowl. Also in 2019 Robert and I made a big life change and bought a house. And I started a new job about 2 minutes away from said house.
These last few years have had many ups and a few downs. But I don’t want to focus on the bad.
“Life is tough, my darling, but so are you.” —Stephanie Bennett-Henry
I write this blog to give perspective of what cancer can take away not for the sympathy.
I ‘m going to start this blog off with saying that I never dreamed of having kids. I always felt that if it was meant to be it would happen.
On one of our very first dates, Robert mentioned that he would someday like to have kids and that has stuck with me ever since.
I would have been a great mom. And Robert would have been an amazing dad. But it is just not part of our future.
When I was told I had lung cancer I was referred to a fertility specialist. We discussed freezing some eggs or going straight into chemo. I chose starting chemo ASAP. And I do not regret my decision! I was told that chemo would age my reproductive parts by about 8 years so I will be looking at an early menopause. After almost 6 years pst diagnosis I have found that being referred to a fertility specialist is not always protocol and I am very lucky to have a forward thinking oncologist on my team. Many are told after it is too late that they will never be able to bear children. I consider myself lucky 🍀
I decided to write this blog because I have recently grieved the idea of ever becoming a mom. Since my treatment is going so well I thought, “well maybe” and then quickly decided that would be a bad idea.
I thought about becoming a foster mom and also quickly decided that that is probably not the best decision for us either.
So for now I will go with the idea that I get to be a “mom” in different ways. I get to be an auntie to my niece(s) and nephews. I get to be a dog mom (cuz really my yorkie puppy just doesn’t eat and that makes me feel like a mom!)