Don't Mess with Texas...or my new T-cells

So last year in 2017 I was told by my oncologist at MD Anderson that there was a potential clinical trial that I could take part in that had promising results. This trial dealt with T-cell therapy (t-cells are a type of white blood cell that fight disease. They fail to recognize cancer, which is mostly why our immune systems fail to fight cancer). Basically--it's a T-cell transplant. (They took some of my t-cells back in November of 2017, mutated them, and then will reintroduce them to my system).

This type of treatment has shown positive results in blood cancers (leukemias) and some sarcomas...but in other types of solid tumors they have not tried testing very much yet...I'm one of the first.

I've undergone multiple tests both in Texas and back home in Michigan to make sure I am able to participate and be a part of this. As of right now--it's a go!

I will be admitted to the hospital on Monday (12/17) and I will be there for about 2 weeks.

Tuesday (12/18) I will begin lympho-depletion AKA they will give me certain types of chemo to kill my white blood cells and bring my levels down to neutropenic levels. I will be spending Christmas in the hospital...not able to leave....possibly not even able to leave my room...and having to wear a mask so I don't get sick with some type of major germ that can kill me (Even something as simple as the common cold could kill me)

On Wednesday (12/26) the plan is to infuse my mutated t-cells to my system. There are some scary side effects...but I guess I've decided to take the chance. It's a choice of trying to live longer and finding cures for this cancer...or just continuing with what I'm currently being treated with...

I'm scared. I'm terrified. I'm afraid of the side effects and the potential outcomes that can occur....but...here goes nothing and everything all at the same time.

Hair today...Gone Tomorrow

On Sunday (11/18) at about 10:00pm, I was laying in bed and took out my hair tie...attached to it were like 4 random pieces of hair...and I wanted to put my hair in a new pony tail. I ran my fingers through my hair (just like any girl would do) and I pulled out a good 20 pieces of hair. Ummm....WHAT??? that didn't happen...I thought "well maybe my hair is just dirty because I don't wash it ever"...I ran my fingers through my hair again...this time pulling out about 30 pieces of hair.

Hair taken from running my fingers through
**The fuzzies were on my bed because of slippers**

I texted the girl who does my hair and instantly said "Not sure if this is what chemo hair loss looks like...but this just happened." She responded and asked if my hair was dirty...I said it probably was. She then told me to shower and to text her a picture of what I combed out of my hair after I shampooed it....

Weeeelllllll.......more came out. In between the comb throughs...I cleaned out the brush...so this was two different comb throughs.

Comb through 1

Comb through 2

I had to force myself to get out of the shower and stop touching my hair because I probably would have pulled it all out.

To be honest...when this started happening--the only thing I could do was laugh about it. It was oddly satisfying pulling out pieces of hair.

Monday (11/19)  I woke up and more hair fell out. I made the decision to shave whatever hair I had left on my head and donate it to whomever would take it (or just throw it out--I don't care anymore). I walked around wearing a hat, constantly touching my hair and pulling more and more hair out each time! I was starting to obsess over it. Is it falling out? Is it not? There was hair all over my clothes,  in my food...EVERYWHERE. I was losing my mind.

One thing that I always wanted was that I wanted to shave my head in front of a group...I think it's so I wouldn't chicken out about it...but also just to show--IT'S JUST HAIR PEOPLE!! MY LIFE IS MORE ABOUT ME THAN MY STUPID HAIR! Granted--I loved my hair.

On Monday, I also received a phone call from one of my school administrators/previous volleyball coach who had said that the football coach was willing to let me shave my head at the pep assembly (our football team is going to the state championship this Saturday!! GO BIG REDS!!!!)) The coach even offered to shave his, as well as many teachers I work with. I don't feel the need to make anyone else shave their head. If they wanted to--they could, but I'll just do mine. HOWEVER, if the football team loses--They owe me a wig!

With that offer being made--I did it. I decided I was going to have my head shaved. In front of 600 some ninth grade students. It was on my terms. It was in front of a group of people, it was for a good reason. I could do this.

The next day I arrived at the gym, I could barely say hi to people because my anxiety was just through the roof. A few people asked if I was ready and I responded with "Nope--but I'm going to do it anyway." I walked out when I was announced. I sat down. My hair had been braided into two braids so the hair I did have could be donated. Those were cut first. Once they were cut my instant thought was "oh my god. Put it back, put it back!!" I had to breath. I had to focus. Then the head shaving started and I couldn't focus on anything except my breathing until it was done.

Once it was done, I couldn't even look at photos of myself. I needed a minute. My emotions were on a roller coaster. It took time and then I finally looked. I LOOKED GOOD!!! I looked the same. The only thing that was different was my hair was gone. BUT I WAS STILL ME!!!

The best part wasn't even the head shaving, which all the kids just stared at me not believing what they were watching. It was the fact that when I was finished having my head shaved--I took off my zip up to reveal a shirt that said "Bald and Badass" The kids went NUTS!

I have two wigs...one I currently have and the other is ordered. But to be real...I'm going to attempt to rock this bald head. I'm gonna wear awesome lipsticks, cool hats, big earrings, fake nose rings and just do what I want to do. Hair is not going to stop me from being myself...I'll miss it...but I'm going to rock what I am.

In the end--I'm glad I did it. I feel liberated. It's definitely cold and I've been sleeping with a hat on.

I AM A BALD, BEAUTIFUL, & BOLD 

BADASS.

 

 

Treatments Thus Far

So my diagnosis is Stage IV adenocarcinoma of the lung with metastases to the brain with a HER2+ mutation. In total I've been on 6 different treatments for my lungs, 5 of which that have failed at some point and the most recent one to just keep me going until we hear from Texas about a T-cell therapy clinical trial. I have also been treated 4 times for the lesions that have been found in my brain...here is all about those treatments!

Lung Cancer Treatment:
Treatment 1: Six Infusions of Carboplatin Alimta (chemotherapy). This was my first type of cancer treatment. I thought this was going to be like the chemo you see on TV...it wasn't. I dealt with nausea, fatigue, etc...had to get shots of Neulasta to increase my white blood cell count, but I didn't lose my hair, it just thinned. Many people talk about that being a major thing...I didn't experience this here. Once I had done my 6 treatments of carboplatin, it was decided that in order to avoid reaching the toxicity of carboplatin it should be time to switch to a different treatment. I could use Alimta again if I needed to eventually (which I did), but it was time for something new...time for a new treatment...

Treatment 2: 6.5 Months on Gilotrif/Afatinib (targeted therapy). This treatment has been by far the best for my quality of life. I took one pill once a day...the side effects were a skin rash that looked like acne and mild diarrhea that could turn crazy. But if I took Imodium--it was manageable. When this treatment stopped working--I was extremely upset because my QOL changed. Scans eventually showed lung progression...time for a new treatment....

Treatment 3: 4 months on Kadcyla and Nerlynx (targeted therapy). This treatment for lack of a better term SUCKED. It was an infusion ever 3 weeks, plus Nerlynx pills every day. The diarrhea with this treatment was RIDICULOUS!!! I was in the office 2/7 days due to dehydration from pooping soo much....and when people said "just drink more water"...I wanted to punch them in the face. Anything I ate or drank went right through me. IT. WAS. AWFUL. So when this one stopped working...I wasn't too upset...I was just sick of crapping all the time. Kadcyla wasn't the problem...it was more the Nerlynx. This treatment was super shitty. Cough started to get worse, scans showed growth...enter next treatment.

Treatment 4: 3 Months of Carboplatin Alimta (chemotherapy) and Keytruda (Immunotherapy). I was back on Chemotherapy, but this time it was a lower dose because it was mixed with Keytruda, an immunotherapy. I still had side effects from chemotherapy, got neulasta shots, etc. I eventually reached my toxicity level with Carboplatin and it almost killed me...sent me to the hospital with a BP of 80/40, Heart rate in the 180s, temperature around 102....yea that one was rough. Once that reaction occurred, it was just Alimta and Keytruda for a bit. Scans showed growth that were confirmed with a lung biopsy...enter next treatment.

Treatment 5: 1 Month of Opdivo (Immunotherapy). This treatment didn't last very long. It did have minimal side effects....but not long after 2 infusions I noticed my cough getting much worse along with my breathing...scan showed growth...time to change...again

Treatment 6: Current Treatment: Taxotere and Cyramza (Chemotherapy and Targeted therapy) I've only had one infusion of this mixture. Apparently this one is supposed to cause hairloss. The first week after this infusion was rough. I felt nausea, fatigue, I broke out in a rash (But that was probably from steroids). It wasn't easy, but my blood levels look OK so my body is handling it. This treatment was chosen for the time being while I wait to hear from MD Anderson regarding a clinical trial that I am eligible and have given my consent on...

The clinical trial is called Adaptimmune. The goal is to use the patient's T-cells (already harvested), mutate them to fight my cancer..kind of working like a transplant in a way...We are waiting to hear what happens with this...but the goal is CURABLE....It's a hope...it's a chance...it's a scary chance...but it's one that we are hoping to take.

FYI for anyone that uses Neulasta--the bone pain is ROUGH. Take the Claritin, heat worked better for me than ice, and don't be afraid to relax. It goes away...eventually.

Last thing--getting my port was one of the BEST decisions I have made in my life. It is so convenient. To be fair...I haven't had any issues ::knock on wood:: and it just looks like a third nipple on my chest...only noticeable if you actually are looking for it.

PHOTO EVIDENCE

T-cells

Brain Lesion Treatment:

For those of you that don't know what Gamma knife is...it's targeted brain radiation. They basically take high doses of radiation, target the lesion that is in the brain....zap it...and let it try to be the treatment. It has less side effects than whole brain radiation, which is another option eventually. The only...challenging part...is the nifty headwater they screw into your head. I don't feel any pain from the radiation, the pin sites just take time to heal.

How the Day of Gamma Knife Goes: You have to arrive to the Gamma Knife facility SUPER early...like 5:30AM early. Once there, they start an IV, go over paperwork and make sure everything is ready to go. They give you medication to help you relax, then take you to have the headpiece placed on your head. (yes they actually screw it into your head in four places) They do use lidocaine to numb the spots, but you still feel loads of pressure and they will always say "we almost have it", but once it's on...you're good.

After the headpiece is placed, the nurses will take you for a Brain MRI, the a Brain CT for the doctors and staff to make a plan as to how to treat the lesion(s) and to make sure everything gets treated. Then you FINALLY get to eat breakfast...while they come up with a plan on how to radiate your brain ;)

Once the plan is set, and they can get started, they wheel you into a room and set you up on the gamma knife table...they will manipulate your placement so they are able to better target what they are aiming for...the machine is VERY similar to an MRI (very enclosed). After everything is treated, they take the head piece off by unscrewing it, they tell you how to take care of the pin sites and then they send you home!

PHOTO EVIDENCE

Gamma Knife 1: 1/18/17 to treat 1 lesion

Gamma Knife 2: 10/13/17 to treat 8 lesions

Gamma Knife 3: 12/1/17 to treat 1 lesion

Gamma Knife 4: 11/2/18 to treat 2 lesions

A total of 12 different brain lesions that have been found and treated. So far Gamma knife appears to be working to keep the lesions at bay. The scary part is just when more appear. Eventually I will have to more than likely do whole brain radiation...but for now--I'll take Gamma Knife any day of the week.

Why I Go Where I Go:
I get asked all the time why I go to a private practice linked with Royal Oak Beaumont Hospital rather than Karmanos or U of M or Cleveland Clinic, etc.....The truth is...I've seen other opinions. I've visited MD Anderson in Texas and a doctor at the University of Michigan to seek second opinions. They communicate...I'm very happy with my choice in doctor and my medical team....I trust her more than anyone will ever understand. She has the one of the most challenging and stressful jobs...but she does it well! She researches, follows up with me, communicates with me and the other doctors...she knows what she is doing. From the doctors, the PAs, the nurses, the lab workers...everyone there has been great towards me. I'm very thankful.  💖

The best advice I can give someone going through treatment is to find someone that YOU feel comfortable with, a doctor that supports you, and an office where you feel you are being treated fairly. Sometimes we don't get to pick and are forced to attend facilities based on our insurance or the type of treatment we need to receive... but if you get the choice--go where you are comfortable!

My "Romantic" Life

When I was first diagnosed with cancer....I was as single as can be. I was 27, I was dating, I was having fun, I LOVED being me. Sure I had a few dates or boyfriends here and there, but I hadn't had a serious relationship in like four years.And I was happy with that. I didn't care. I didn't want one. I was happy in my life without it. I knew that eventually I would meet someone that would make me happy--but during that time I was good.

When I was diagnosed...I for some reason changed my point of view to "I'm happy being single" to "I'm going to be single forever because no one is going to love the cancer girl."

When I was first diagnosed I remember asking if there was a dating website for cancer patients...my sister laughed at me and said "I'm not sure, but why does it really matter?" (I was kind of joking when I asked it--but was curious! They have dating websites for everything else)

As the weeks went on with cancer treatment, I was getting more and more concerned that I was never going to date again or dying alone. Around Valentine's Day I was back in the hospital with a chemo fever and I was at the point in my treatment when my hair could potentially fall out. While brushing my hair I watched like five pieces of hair fall out of my head....and I started crying. My sisters felt so bad and couldn't understand why I was crying even a nurse came in to see what was wrong. I finally blurted out "MY HAIR IS FALLING OUT" and I held up the 5 pieces of hair that had come out when I combed my hair. My sisters and the nurse kind of stared at each other like.."ooook?" As I continued to cry, they still didn't understand why I was upset. I then shouted

"NO ONE IS GOING TO LOVE THE FAT,BALD AND UGLY CANCER GIRL!"

They just started laughing. Firstly, I was far from fat. I weighed about 150 pounds and my cheeks were just puffy from steroids. Secondly, when you lose your hair from chemo and cancer it normally will come out in clumps. My hair was just coming out from natural shedding. (My hair did thin from my original chemo, but it didn't fall out). Lastly, I was being ridiculous. Of all the things that I could possibly be worried about--this probably shouldn't be one of them.

As months went by I started to feel more like myself, I went off chemotherapy and was put on my second treatment which was a pill, and I was off oxygen. People didn't look at me and think to themselves "what is wrong with that girl?" I had been spending time with a male friend of mine, but I wasn't sure if I had feelings for him or not...I was kind of unsure and didn't want to put anyone through what I was going through...

When reading about dating with cancer online (yes--I did my research) they say not to tell the person that you have cancer right away. I get that...The information can be slightly overwhelming for others to hear. You may want to be friends with the cancer patient, but why would you want to date them??

Well the problem with not telling the person about my cancer is if they searched ANYTHING about me online (my Facebook, Twitter, Instagram...hell even googling my name) they would know within .05 seconds that I had stage IV cancer. Yet again my thoughts of "Why would someone want to date someone that is just going to die?" continued to come into my head.

Near the end of July in 2017, my best friend from high school's husband had sent me a text about a guy he wanted to set me up with. I was unsure about the situation in general because I hate set ups and he had been trying to set me up with this same guy even before I had cancer. When he first sent me a picture of the guy a year before my response was "eh--he's really not my type and I'm not in the place where I want to date. I need to get to know myself". (Remember--I was loving the single life 😉). Throughout the year he brought the guy up a few times and each time I denied the set up...I didn't want to get set up, I didn't want to date, and I had been diagnosed with cancer a few months before...I didn't need anything extra on my plate, that included a boyfriend.

Anyway--during the month of July I was feeling a bit more adventurous with my life, but I was also annoyed that he continued to bring this guy up even though I politely avoided the situation before. I decided to tell my best friend's husband to give this guy my number. I figured I could really easily scare this guy off. I was really good at being intimidating and awkward...plus I had "the cancer" so that was scary enough.

A few hours past that day and I received a text.

"Hey, this is Robert"

Who the f*** is Robert?!? I didn't respond for a few minutes because I couldn't think of why someone named "Robert" was texting me. Eventually it was made clear that he was the guy I was being set up with. 

I tried to be short with him to "scare him off," but in the end he was super patient, funny, he knew the difference between to, two and too....plus he was really cute. So after a few weeks, when he asked me out on a date. I gave him a chance.

He gave me two options on where to go on a date. We decided on dinner and then a comedy club. I can honestly say--it was the best first date I have ever been on. We talked, we laughed, we had fun, and I really felt like I could get to know him.

The second date, we went to dinner and a movie and when we said good bye he hugged me and he nearly broke 3 vertebrae in my back...but then when we stopped hugging he kissed me....so I think he was a little nervous.

Time has gone by, he has been super understanding of everything that happens to me. He is always super supportive. We have our ups and downs...but he is still such a great guy to me and so far I am very thankful.

So in the future we will see how things lead, but here are some pictures of Rob and I...I love you 💗

UPDATE: (1/15/19)

About 2 weeks ago Rob and I split up. We were growing apart for a few weeks and the stress of any given relationship in addition to me being sick caught up. The split was mutual, however, unfortunate. I'm thankful for the time we had together--but it didn't work out.

For the time being--I'm focusing on myself and my life. My body has been through a lot in the last few years and I need time to self heal.

Olllldddddd Journal (video) logs from Early 2017

Two years ago when I was diagnosed---right from the very beginning I decided I wanted to "share my story." When I made that decision I thought a video documenting everything would be the way to go...unfortunately, I kind of just stopped after a few weeks. Plus...who wants to watch these lonnggg fricken videos??? Well--maybe someone

During these videos I put in some time talking about little things that had occurred so I could remember them. To be honest....I haven't previewed or even watched these before posting them... But I wanted to show my audience how I looked, felt, sounded, and the image I had even when I was just diagnosed. As time has gone on I remember most of the things that occurred, but forget many of the small details.....

With that being said...I hope you enjoy (laugh, cry or even just smile) at me trying to believe I could make a difference with my experience.

My Reason

1/25/2017

Cancer Day

1/25/2017

Hospital Stays & Goals

1/25/2017

Chemo Days & After

1/26/2017

Gamma Knife

1/29/2017

Family

1/29/2017

Day of Diagnosis

And we are back...to the worst day of my life!

After I finally came back from my zone out in the doctor's office and regained my sense of life. Lung Cancer??? I instantly thought...it isn't me...there's a mistake. The medical office swapped my results with an 80 year old smoker or some coal miner from down south....it's wrong.

After the doctor was done giving us this news and I still had yet to respond to anything, my dad kindly asked the doctor to give us a minute alone in the room. He had said "of course" and excused himself from the room.

The second the door shut when he left...I cried. I didn't even realize I was crying...my whole body just gave in to my tears and I sobbed while my dad held me. I believe he was crying too but I can't remember. I've rarely seen him cry...and to know he was would attribute this to the fact that the diagnosis was real...which it couldn't have been.

After about 2 minutes of sobbing--I just stopped. I sat up and I said "Well crying isn't going to fix anything. Let's go see what the oncologist has to say." and we walked out of the office and to the oncology building.

On the walk over I had a conversation with my dad that I wanted to make sure went my way. My mom had been dealing with chronic back pain for a few years. She had finally found a surgeon that could potentially help her. I made my dad promise me that he would make mom get the surgery still. He said he would think about it. I repeated myself that I needed him to PROMISE ME. He finally did. I knew this would be an argument between my mom and me and I needed my dad to be on my side.  One of my fears at the time was of me going through some sort of treatment or possibly dying without my mom being able to be by my side...

Eventually we made our way to the oncologist's office. When we arrived, the staff walked us to this small room with a round table and chairs in the back of the office. While sitting with my dad in the room the door swings open and my older sister bursts in. She is crying, walking directly towards me  saying "Nichole... I'm so sorry." She immediately grabbed me and hugged me so tight. A few minutes later--my mom (who left work early because she felt something was wrong...) walks through the door with tears in her eyes and begins to hug me.

And with another knock on the door, I met the person that would be in charge of my medical team... My Medical Oncologist.♡ 

She was young, and according to my sister, she was one of the smartest doctors that she had ever met. During the next hour or so she prepped us with loads of information about the cancer that I was diagnosed with, told us they were going to check for genetic markers first to see if there were targeted therapies that could be used, had about four different treatment plan options on her mind depending on the what the labs brought back. It helped just to hear something...mostly anything.

To this day I am forever thankful for the personal way that she spoke with my family and me, for the comfort that she was able to provide to us just be answering questions, and communication with us in a way that could be understood what was going on! She was kind, she was intelligent, hard working, and deep down she is a shark! She was the best possible doctor I could ever ask for...and to this day she still is!

During this visit however, my family and doctor had talked about how pale I was looking...so they tested my pulse oxygen level...which consisted of placing a pulse ox on my finger and having me walk up and down this very narrow hallway. A normal level is between 98-100%....mine was at 82%. Turned out I wasn't getting enough oxygen in my blood to my extremities...so not only was I 27 and just found out I had lung cancer....

I WAS BEING PUT ON OXYGEN!!!

Instantly--I laughed. I couldn't think of any other way to react...this was absolutely OBSURD! I joked and said that we should go to the casino with my oxygen tank...which I at that time had name Linda.

Linda
The Oxygen Tank

Me
January 2017

The last part about this meeting is that my two younger sisters had been unable to attend this. They had both worked nights the day before and asking them to wake up and hear bad news...I just wasn't willing to do. I didn't want to tell them over the phone either. I lied to them on the phone when they called and said "Everything is fine. Just come over for dinner later and we will tell you what they said!" My boos, Shelby and Madison, deserved to hear this in person and not over the phone. I don't regret waiting to tell them...I love my family enough that I would have wanted to keep them from this information for months...but I never could have done it.

The other part that I loved about the oncology office I went to...was the staff. My older sister, Christine, worked there so it made the place feel like family. You would think a chemo center is sad, scary, depressing. I have had more happy times and laughs in that office that I can even count. That office is great. One of the nurses came up to me and said "I know you don't know me--but if you EVER need anything, ANY time or ANY day...this is my phone number. You can call it, you can text it. I will ALWAYS answer" She wasn't the only kind one...she just definitely made a huge impression...and now often calls herself my other big sissie. ♡

After going over all of the basic information with my oncologist going on oxygen and getting my intro to the office, the doctor discussed that in order to be proactive we should have a brain scan. Lung cancer has a tendency to metastasize (spread) quickly. Most commonly it spreads to the bones or the brain. My bones looked clear in the PET scan and the CT Scan, so the only thing left to check was my brain.

Christine, my older sister, and I left to go get the scan done at another branch of the hospital. Before the MRI we stopped Wendy's for a quick bite to eat, and we talked about what was happening. I remember asking her on the way there "Christine am I going to die?"....I don't know if it was the nurse inside of her or her trying to be my big sister...but she replied right back to me "I don't know, Nichole, and neither do you. We can't tell the future!" She then told me she would name her child after me....I then made a stupid joke about wanting to name her daughter some hooker/stripper name and she slapped my arm....I love this relationship I have with my sisters. We used to not even be able to be in the same room as each other when we were younger...but as we grew up....we knew we were going to make it.

After Wendys, we finally arrived to get the MRI...and I realized one thing right away-- I DIDN'T WEAR SOCKS IN MY SHOES...One of my laziness problems shows its head. And Christine comes in to change with me just to give me her socks....Thinking back now--it makes me want to cry. She could have made me wear those hospital socks they offer..those nasty ones that aren't soft at all and have the skids on the bottom...you know the kind...they're awful. But my older sister took the socks right off her feet to give to me.

The MRI was unlike anything I had experienced before. It was loud, they strap a cage around your head so you can't move, and you have to lay still for about 40 minutes...The entire time I was in that machine I just thought about the day I had...and how it could possible get any worse..

It Definitely Did Get Worse...

After the MRI, I decided I would go to school to talk with my principal and my union rep about taking some time off work so I could begin treatment. Everything was going well, I was thinking of the future and figured after a few weeks (missing a few random days through the year) I would be back in no time.

...and then the phone rang.

My oncologist was on the phone. I couldn't understand why she was calling me so soon after I had just seen her. It had maybe been 25 minutes after the brain scan.

She immediately told me they found a spot on my brain...

Brain Scan w/ 11mm Lesion on Left side
January 2017

I just blanked...I couldn't think, I couldn't move, I didn't hear a thing she said once those words came out of her mouth. It was in that moment that I realized that all of this was real.  Up until that point I had assumed it would be something that could be easily fixed or changed, I still thought there was a high percentage that it was a paperwork mishap. One that we were going to find out was a total mistake and we would have the hospital apologize to us with thousands of dollars as a settlement....but it wasn't any of those things.

This was real.

I had lung cancer....and the lung cancer had spread to my brain. I was going to die.

I eventually came back to reality and remember my oncologist repeating my name. She asked if I was alone and I said Christine was with me...so I handed my phone to her and walked out of the room. I was numb...I felt absolutely nothing, I didn't see anything around me, I didn't hear anything around me...there wasn't anything...just numb....

I walked and walked and walked in the hallway of the school....until I reached the gym and found my friend Claire, who had been at the school late for an Open Gym for softball...and I just grabbed her and started crying.

There was nothing left for me to do. I was absolutely terrified. I watched images in my head of having a wedding, having kids, buying a house, going on vacations in exotic places, running races, growing old...they all started to disappear and I hugged my friend tighter and tighter as each one was taken from me.

My sister found me in the gym holding onto Claire and had said we were going home.

We stopped at CVS to pick up some prescriptions. Not only did I still have to tell my younger sisters that I had cancer at all...I now had to share with them and my parents that the cancer I had was already spreading.

HOW WAS THIS EVEN POSSIBLE!?

My heart felt broken that day...but I will say that eventually my spirit woke. I made the choice...along with my family that we were going to fight this through to the end.

I have worked hard for so many things in my life, I refuse to just give up now. Even though many people say they would trade places with me or go through it for me...I would never let them.

This is now my battle and my fight. I may be the one fighting it...but I'm NOT Fighting Alone!

Wouters Warriors T-shirt
I Can Fight Cancer

Later that evening....
word got out at the school to my students and fellow teachers...and some of the stories started turning. and giving incorrect facts. I was already exhausted from the crazy day I had...I was getting 100s of texts and phonically of people wishing me well. I was thankful but I was overwhelmed.

It was at this point that I decided I wanted to be able to share my story with my students, friends and my community....so I took to twitter (https://twitter.com/nwouters515).

I did this for a few reasons. To keep in touch with students since I was going to be out of the classroom, to update people quickly and not get 100s of emails and phone calls and texts. To use technology in order to spread the word. To potentially meet other people going through the same things. Lastly, I chose that I wanted to share my experience and stories with those around me.

Over night....I went from 10 followers to 1200 followers...

It doesn't sound like that many...but for a 27 year old teacher in suburban MI...I felt pretty cool.

The next day...everything would start. I would talk to a radiation oncologist about the brain lesions and I would speak with my medical oncologist about my line of treatment to help me get better.

But at the end of that day, my diagnosis day,  I was now a 27 year old woman with stage IV adenocarcinoma of the lung with metastases to the brain. I was on oxygen all the time. My chances of living the next 5 years was less than 10%...

My entire world and entire understanding of life changed in the blink of an eye.

Public Speaking

Over the last few months, I have had the opportunity to share my story at two wonderful events. One was a cancer organization that provides so much to young adults fighting cancer. The other, was to my students at the 2018 Chippewa Valley High School graduation.

If you're interested in hearing my words to others--feel free to listen! I attempt to do my best in both venues to address the audience in how I feel about cancer and what I have done in my life since. I'm a teacher, but that doesn't mean that public speaking comes naturally. Enjoy

Cassie Hines Shoes Cancer Foundation Gala Speech 

March 2, 2018

Chippewa Valley Graduation Speech 

June 10, 2018

About Me & Before Diagnosis

Selfie
June 2016

Alright so--Here's me

My Name is Nichole Wouters. I was born and raised in South Eastern Michigan, about 35 minutes outside of Detroit. I am the second born of four children. 

I have three beautiful & hardworking sisters and the two most supportive parents a girl could ever ask for. My dad is a retired Police officer, my mom is a middle school teacher, and all three of my sisters are registered nurses. I have two brother in laws, one soon to be brother in law, and now a BEAUTIFUL NIECE!!! We are a tight group and we like it that way!!!

Family Photo
December 2015 

Family Photo
December 2016

As for the rest of my life up to cancer....

I graduated from Dakota High School in 2007, I then went to St. Clair County Community College (SC4) in Port Huron to play Volleyball and continue my education. Once I finished my two years of eligibility at SC4, I transferred to Macomb Community College to be closer to home and finish my prerequisites. From there I transferred to Wayne State University to obtain my Bachelor's of Science in Secondary Education Mathematics with a Minor in History in 2012.

Before/After Working out

Once I received my degree I began teaching mathematics at the WONDERFUL Chippewa Valley High School, began coaching volleyball, undertook the task of getting my Master's in Education Technology from Central Michigan University, and was loving every minute of the career I chose for my life. I made great friends, I was making an impact in the lives of young adults, and I loved the community that surrounded Chippewa Valley.

During 2015 I had been unhappy with my body shape, and being a previous athlete I knew that things needed to change. I started to work out! It wasn't until the summer of the following year that I went hardcore with this. I lost about 35lbs, was 17% Body Fat, I was strong, fit, beautiful and confident.

Abs
October 2016

Back Muscles
October 2016

Leg Muscles
October 2016

So I guess you could say that by the fall of 2016 I felt like I had everything I could want in life.....I had a great family, I had a perfect job in teaching and coaching, I looked reaaallyy freaking good, and my life was absolutely amazing. I had made plans to start looking for a house in the coming months so I could keep making my life better day by day. I was going out and having fun...I loved being me.

Then EVERYTHING started to change....

For a while I was getting in this awesome shape...I developed a cough. Just a dry cough and I didn't think much of it. Reasons being: 1) I'm a teacher...we get sick all the time and a cough is not something major, 2) It was the fall...weather changes happen and everyone has a cough. 3) I was coughing more when I would exert myself (AKA workout) so I just thought I was not pushing myself hard enough. I kept pushing through and pushing through...I avoided going to the doctor because I didn't want to spend money on going to the doctor. I actually told someone "I'd rather buy a new pair of shoes than spend my money at the doctor...the cough will figure itself out". Weeks and weeks went by until the cough got really bad and I started feeling tired.

The night before Thanksgiving I was playing board games with my girlfriends (yeaaa I know--I'm super exciting) and I wasn't feeling well so I left early.....that doesn't happen. Then on Thanksgiving I woke up vomiting...weird. I don't get sick. After I started to feel better I decided to go workout (duh!) I got to the gym and began to do my workout...and collapsed. I couldn't do it...I went home to get some rest...slept through the entire day, and then slept through the next day. So by Saturday I was somewhat feeling better, and Sunday I felt recovered enough to go to work the next day! During all of this my family wanted me to go to the doctor. It was the holiday--the office wasn't open so we tried urgent care....which had a 2.5 hour wait. YEAAAAAA RIGHT am I waiting in that. I felt better so I could continue on with my life.

I showed up to work on Monday and felt like GARBAGE. Coworkers telling me I looked like death and needed to see a doctor. I finally went to the doctor. JUST looking at me my doctor said I had pneumonia and needed to take a few days off of work. Sent me for a chest X-ray, put my on steroids and strong antibiotics. You can see in the picture of how I looked the day after I went to the doctor...YIKES!

Me
November 29, 2016

The next morning I got a call from my doctor saying that they needed me to come back into the office to get another round of steroids and for immediate follow up. Turned out that the x-ray showed bilateral pneumonia in 3 of my 5 lobes of my lungs....AKA I should be hospitalized but we were going to attempt to not do that and treat it outside the hospital...that meant more time off work.

I continued to try to recover, but on a repeat chest x-ray it didn't just show the pneumonia...it showed that these "nodules" or markings were appearing all over my lungs. The worded it as "an innumerable amount of nodules"....aka more than they could count...There were so many unanswered questions. What were these nodules? Why were they there? Were they new? More tests, more scans, more time off work...and eventually I met with a Pulmonologist who very....not nicely put it that we needed to rule out cancer. Luckily because of my sisters, I was able to get with an AMAZING oncologist quickly and get all the testing done even faster. I had a CT of my Chest, abdomen and pelvis (showed the abnormalities in my lungs), had an echocardiogram (showed that I was in heart failure because of the issues with my lungs), had a PET scan (lungs lit up like a Christmas tree), and finally a lung biopsy of the questionable tissue. Doctors had been saying that it was potentially an autoimmune disease so I would have to work with a pulmonologist. I had made plans the following week to meet with one recommended by the oncologist.

The next week on my way to meet the pulmonologist...there was a really bad snow storm. It took my dad and I almost 2 hours to get to the appointment. While on the way there--my phone rang. It was the oncologist office, saying that they had a cancellation and wanted to move my appointment up to today. I thought that was so convenient! I didn't have to come back another day to meet with the doctor. About 10 minutes after that my older sister sent me a text saying that she got switched to her other office location today and she would be able to attend my appointment today too! Everything seemed to be going really well...optimism!!

My dad and I made our way to the office of the Pulmonologist, we were waiting in the room to speak with the doctor and my dad looked anxious...and I wasn't sure why. A few minutes later the doctor came in, SUPER friendly and talked about what he had heard about me and then his tone changed as he said "I'm not sure if you knew or not but your biopsy results came back today...and unfortunately it is cancer."

umm....WHAT?!

And just like in the movies when you see someone receive bad news....I zoned out everything in the room....

Welcome

Hi--My name is Nichole. I am a 29 year old young woman. I'm a teacher, a volleyball coach, aaaaannnnnddddd a Stage IV Lung Cancer Patient/Fighter/Survivor.

I've been fighting my cancer for almost 2 years and it's starting to become a struggling journey that I want to share parts with people around me. Some of it is funny--some of it is dark-- some of it is probably not going to be worth anyone hearing about...

However, as time passes and I begin new treatments....and those treatments begin to slowly fail...I'm getting a feeling that I'm watching my life tick away. How much time do I have left? I don't know...but does anyone REALLY know?? I could go into heart failure tomorrow morning and this will never get started OR I could join a clinical trial that cures all the cancer and I become an "inspiration....and turn this into a book...or a movie...or a tv series. NEVER KNOW!!!!

So why not share my thoughts not just for myself but eventually for the people that I love.

Reasons I "fight":
My Family. 
My Friends. 
My Community.
My Life.

THIS IS ME--I'm not just gonna lay back and act like it doesn't matter.

Most of these people don't know how I feel and even if they do...when I die--they may forget!! So just to remind them when I'm gone....here's all the crazy things that happened!!

I'll take a few posts to kind of introduce my past...and then I will make my way up to my current days and follow along with those until the very bitter end.

A word of caution--if you don't like the things that I say in my blog...DON'T FEEL LIKE YOU HAVE TO READ IT. Everyone is entitled to what they think or feel...but you can take your negative opinions elsewhere... Leave this as it is and take your negative comments out of my life.

Much love,

Signed: Nichole aka Hoots aka Wouts

CancerCon 2018
Denver, CO