My Obituary

Note: I’m not really dead. But 365 days ago I was convinced I was going to die when I found out I had cancer. I wrote this soon after and unfortunately my dog Merlee and my cat Oscar have both passed away. I still miss my long hair but am so grateful for these last 52 weeks of life. I’ll write more soon xoxxo

Nicole Rei Burm, from Custer, was born on a warm July 2nd day 1982, lived a beautiful life.

She was the daughter of Patricia (Pat Epright) Burm, Custer and Jack and Linda (Iczkowski) Burm, Amherst Junction. She was the sister to Jocelyn Barnwell, outside Bozeman Montana and the aunt to Jadyn and Jazzelyn. Nicole was a dog mom to Merlee, Kooper and Madison. Cat mom to George and Oscar. And chicken wrangler to many happy hens and a few roosters on her farm Pleasure Pastures. She was also the girlfriend to Mike Proulx.

Nicole attended local schools in Stevens Point and graduated from SPASH in 2000. She moved to Minneapolis and attended The University of Minnesota for three semesters before transferring to The University of Wisconsin at Madison where she was proud to be Wisconsin Badger. Nicole graduated with a degree in Zoology and Environmental Studies in December 2004. She later received an additional Biology degree from UWSP in May 2007.

Nicole was a hard worker and worked hard to provide herself nice things. In high school she worked at Culver’s, in college at Home Depot and then in 2008 she started working at Associated Bank. She always wanted to use her college degrees but her dreams were much bigger.

After a few years as a delivery driver in Central Illinois, Nicole moved home and started her farm, Pleasure Pastures in April 2012. Raising chickens was a dream of hers since she interned at Wildwood Wildlife Park in Minocqua. The funny part was Nicole rarely ate eggs.

Nicole became the Training Specialist in the bank call center in December 2013 and poured her heart into training new colleagues to be the best they could be, not only while at the bank, but in life.

She enjoyed writing, reading, watching tennis, playing volleyball, throwing darts, drinking beer, eating tacos, and most especially spending time with her dogs. Nicole became focused on her health in April 2017 when her grandmother passed away. Fitness and working out was part of her daily life.

In June 2018, she was diagnosed with cancer.

Preceding Nicole in death were her maternal grandparents Fred and Bertha Epright, her paternal grandmother, Alice Burm. Her step mom’s parents Willard and Cecelia Iczkowski. Her cousin Tony Gigliotti and her favorite dog Kosmo. She is survived also by her paternal grandfather Donald Burm, many aunts, uncles, cousins, cousin’s kids and Mike’s amazing family who treated her like their own.

Life is so short and so precious, be grateful for every minute.

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A Year Ago

I was sick but telling myself I’d get better.

I was working out, hard. And it was hard. But I told myself it was because I was out of shape.

I was tired. So tired. But I was working a lot.

And finally I had to do something about it. Mike begged me to go to the ER… and I finally did. It was June 6th.

It wasn’t pneumonia or bronchitis like we thought the chest wheezing was from. It wasn’t anything in my lungs at all. It was a large mass growing out of my thymus spreading over my heart, penetrating my lungs. It was cancer. Within a week I would have had multiple labs ran, two more CT scans, an EKG followed by a heart echo. I would talk to a surgeon about something being permanently placed in my chest, and cried so many tears… I had cancer.

On what would have been my grandmothers 89th birthday, June 14th, after my three chemo cocktail, I had my first PET scan. Though I didn’t know the full extent of my cancer, though I didn’t know if it was the dreaded, usually fatal double hit lymphoma, and before that awful chemo port was placed, I had a radioactive tracer pumped into my vein. It attached itself to my cancer like a moth to a flame.

I often find myself looking at this terrible image. I don’t look very human. My thighs aren’t that big, are they?

I have had two additional PET scans. The cancer is still “gone” but the word remission isn’t used. I’m not out of the woods yet. I don’t know if I’ll ever be. Cancer changed me in ways I never thought possible. But how can it already be one year ago?

One year ago

Last March I was fighting off headaches. They were a constant battle. I was and still am so thirsty. I felt like I could never get enough hydration. I blamed it on the fact that I worked out an hour a day.

I blamed the headaches on my sinuses. I had called my ENT doctor to set up an appointment. Six years prior, a different ENT doctor thought I had a cyst growing in my right cheek sinus, which was blocking the natural drainage. This in turn was causing the annoying sinus infections I battled every single year.

On my CT scan, they didn’t find a cyst or any reason for my constant infections, but they found a mass growing on the lining of my brain, a meningioma. This tumor measured 10 mm round, like the size of a dime and is positioned behind my left ear, over the temporal lobe. The tumor was calcified and they didn’t seem too concerned. I would need to follow up in six months for another scan to determine if it grew any.

I was so upset. I had a mass growing in my head. Little did I know that the headaches weren’t caused by that tumor but one much more severe growing off my thymus gland.

So much has happened in 12 months and I know so much will change in the next 12 months. Life is short and precious. Be grateful for everyday. ❤️

What about us?

Thursday I walked into the cancer center for my daily dose of radiation and one of the volunteers came in and talked with Sara, the receptionist.

The volunteer was talking about the new Breast Cancer Center that was put in at the other end of the hospital. She wanted to know who came to this clinic and casually mentioned, “what about us?”

There is a long list of the different types of cancer, however breast cancer has the highest diagnostic rate overall, over 268,000 people in the US in 2018. So with being the most common cancer, there is a lot of research and funding into finding a cure.

But what about us?

I found a cure for my lymphoma, it’s called R-CHOP chemotherapy and it worked well for me. However my body aches, my brain is foggy and I forget words and thoughts easily. I’m exhausted and always thirsty but I’m alive.

I don’t want a cure, I want to prevent cancer. Why are so many of us, young people getting cancer? Why is it so common that we know so many people that have had cancer? Cancer was not as common 100 years ago as it is now, so what’s different?

Our diet, our lifestyle.

I won’t get on my high horse and preach because I think life needs to be enjoyed in moderation. But you control what you put into your body and your children’s body.

The sad part was that prior to getting diagnosed with cancer, I was the healthiest I had ever been. I exercised daily. I ate healthy. I never eat fast food. I always ate salads. I drank beer. So how healthy do I need to be to prevent cancer from coming back? I honestly think it is too late to prevent a recurrence. I’m going to continue working out daily and eating healthy. All I can focus on is staying healthy, avoiding colds the best I can and getting enough rest.

There are many types of cancer out there. I have learned so much in the last 6 months. I hope that cancer researchers continue to learn more ways to cure cancer and don’t forgot about the rest of us.

Anxiety is Overwhelming

At work, another trainer and I were talking about anxiety. It is a common theme we have as trainers. So much of what we do is out of our hands and causes us to work on the fly. For a planner like myself, this causes extreme anxiety. I used to have my whole life planned out… and then life started happening. Now I’m lucky if my day goes as planned.

Another thing I get anxious about is scans. CT scans, PET scans, MRI scans

I used to not have a care in the world when it came to my health. I was healthy as a horse. My good cholesterol was perfect. My bad cholesterol was low. My blood pressure has always been low, sometimes too low. My weight has typically been “normal”. So when I needed any scans done, I’m good. I got this.

Until cancer.

There is life before cancer and life after cancer. There was carefree, healthy, live life like it will last forever Nicole and now anxious, fearful, do I still have cancer, has the cancer spread, when am I going to die Nicole.

Everyday I mourn my old life like I mourn the loss of my grandparents. Everyday I deal with the grief of what could have been. Everyday I deal with the guilt for still being alive, or being “healthier” than other cancer patients.

Last week I had an abundance of energy for work, however I was tired by the time I stopped moving. This week, I am getting more sleep than last but I’m exhausted. I don’t want to get up. I don’t want to stick with my routine. I don’t want to work and once I stop working, I’m so extremely exhausted.

I had my PET scan Thursday afternoon. I had to eat a restricted low carb diet on Wednesday. No fruit, no grains, no sweet veggies, no sweets, no alcohol. Pretty much avoid any sugar. Thursday after 6am, I couldn’t have any food. I love to eat. I am still active.

The first PET scan I had was the day I received chemo, so I wasn’t eating anything anyways. But this time, I took the Thursday off from work. A hangry Nicole is not a good thing. I worked out. I kept busy around the house. I drank as much water as I could. My appointment was at 2:45. I left the house at 2:30. I didn’t get called back to the mobile unit until nearly 3. My scan didn’t start until after 4 and I wasn’t finished until after 5.

I finally got some food and the long wait until the following Tuesday began.

Friday night at darts I missed the board more often than I could count. Sorry not sorry. I had the rest of my life on my mind.

Saturday we had a wedding. I’m socially awkward to begin with and then add some alcohol and a bunch of people I only kinda know… and no one really to talk to. So when I ran into my ex-boyfriend and his sister at the beer keg, I was happy to talk to someone but awkwardly excused myself after I told them I didn’t shave off my beautiful long hair just because. Cancer rings through my head. Watching the reaction of people who care about me (or cared about me) is pretty intense. I have become more compassionate in the last twenty weeks. But it’s still cancer!!

Sunday I was distracted for the morning as we ran up north but found myself overwhelmed with emotions and anxiety when we returned.

Monday I worked for a few hours but was physically ill. I could barely stay out of the bathroom and ended up going home after five hours.

Tuesday morning I worked out and headed to the cancer center. My port was flushed and blood was drawn.

Then I saw my oncologist. I could tell from his smile that I was ok. He hugged me and said, “let me show you!”

My first scan showed my large tumor. Don’t mind how extremely creepy these scans make me look.

My post chemo scan only shows an extremely creepy sloth-like head.

My cancer is gone. Completely gone!

Fuck off cancer, I won!

Next is port removal and then radiation to prevent cancer from coming back in this location.

Headaches and my Heart

Headaches have been the common theme throughout 2018, whether stress or health induced. Most of the time I am too stubborn to do anything about them or even take a Tylenol.

But my heart is another story. I am always checking my pulse. And when my heart started to act funny, I became very concerned. I could feel the palpitations. The beats were strong and were freaking me out. I am guessing my heart was getting used to the poison of the chemotherapy drugs. I also still workout and have a HIGH STRESS job.

One morning in July my pulse was 26. That can’t be right, so we took it again. Low 40’s. And again, 48. Mike was really concerned and I called the cancer center and went in right away. I had an EKG completed and Premature Ventricular Contractions (PVC) were found. These were not found on the first EKG that I had in the ER when this cancer crap first started. I then had another ECHO on my heart. I could see the PVCs. I was scared. My sister has congestive heart failure. Now my heart is junk.

They ordered a 48 hour Holter Monitor on my heart. I was also prescribed a beta blocker. I will never know why they were giving me something to slow down my heart when it was already too slow but I did what the doctors said.

The first Holter didn’t work. The second one was ordered and I was still on the beta blockers.

Fast forward to the week after infusion 4, mid August. I had R-CHOP on Tuesday and five days of 100 mg of prednisone. Sunday I was finished with the steroids and feeling “normal” which is tired but no headache. We had a family gathering and I was excited to see Mike’s family.

I noticed I wasn’t drinking as much water as I usually do and started to feel yucky. We left for the grocery store and I remember the lights and noises in the store were just too much. I wanted to get home and in bed.

I laid there practically until Tuesday. The overhead lights were too much. The dog’s smell was too much. I slept for hours at a time. I didn’t know at the time but I had a migraine. I couldn’t eat and barely drank, only making things worse.

I had labs on Tuesday morning and remember driving in thinking I probably should not have drove. I told Sara I had two things 1) I am really dizzy 2) I still hadn’t heard from the cardiologist and something else. She laughed and said that was three things. I wasn’t funny that day. The lights hurt. My head hurt. I kinda wanted to die.

My nurse Kathy came and got me to go back into a chemo room. They wanted to start an IV and had to use my port. Did I mention how much I hate my chemo port? But thankfully it was there as I was extremely dehydrated. Kathy gave me ginger ale.

Since starting chemo over two months prior, I gave up coffee, sugar and alcohol. So ginger ale was something new and something I normally did not like.

I told Mike I was at the hospital and called my dad. I needed someone to take my Jeep and I home. Thankfully my dad and step mom are retired. Dad is always willing to help out and was at the hospital within an hour. He is simply the best dad.

Kathy gave me a small dose of morphine and left me in the darkness. The migraine finally started to reside and I was talking again.

I saw the neurologist that afternoon and he suggested to stay hydrated and to follow the doctor’s orders. The cancer center thought my migraine was caused by abruptly stopping the prednisone. Prednisone is a corticosteroid and these are naturally produced by the adrenal glands on top of the kidneys. Mine probably stopped working while taking the high dose of prednisone and then suddenly stopping them caused the migraine. I would need to taper off them after infusion five and six.

Now let me tell you how much I hate steroids. I have no idea what would happen if I wasn’t taking them but they suck. I get moody. I get puffy. I am hungry but don’t have a taste. I’m in pain and my headaches are off the charts.

As I type this (September 28th) I am on the last day of 100 mg. I have one day of 50 mg and then two days of 25. I am more ready to be done with prednisone than I was for chemotherapy.

The day of the migraine was also the last day I took beta blockers. While in the midst of the morphine, the cardiologist had called too. The lady said there was nothing wrong with my heart. I was short, probably a bit rude and said “what about the PVCs and then why am I on a beta blocker?” She didn’t have anything to say and I decided to be my own advocate and stop the drugs. They called a few days later and explained the findings of the Holter Monitor, the PVCs and how my heart should rebound after chemo is finished.

Listen to your body. Ask a lot of questions. And don’t be afraid to ask for help.

When I said Goodbye

I wrote this in July of 2017. A mere three months after we lost our grandmother. I couldn’t publish it then and even now, I find it hard to hit publish. Grief is different for us all and we tend to not discuss it. This is how I feel and how I deal. ❤️

I have been quiet lately about a lot of things. I have been quite busy at the same time. I try not to talk about the things that bother me deeply as I am best at processing them internally but I can’t help but cry when I think of the hole my grandmother’s passing has left behind.

I would like to say we were close but we had been closer.  We used to talk weekly and I used to visit as often as I could but two years ago it became difficult for me and I used that as an excuse for my distance.  I know it hurt her I wasn’t calling as often as she would always say “it’s so nice to hear from you Niki.”

I thought about my gramma often, especially after talking to an older customer at work.  I would call her on my lunch or after work just to let her know I was thinking about her.

It was so nice to see her face light up at Christmas with most of her grandkids and great grandkids at my aunts house. She was so excited to see my cousin’s twins.  She loved babies and reminded me often that I should have children.

I called Grams one random day in March and she sounded tired.  She admitted she wasn’t feeling well and hadn’t been for awhile.  She was 87 years old and I knew how lucky I was to still have her but at the same time I tried to prepare myself. So when I got the text from my other aunt the following Friday, I knew I had to be with her.

Gramma was so much more than my mother’s mom. She pushed me to study hard in school. She helped me study math and English with flash cards. She always encouraged me to keep trying.  She knew it wasn’t easy putting myself through college, taking out loans and working more than full time. She thought my move to Texas was irrational but she knew I was going to do it anyways.

Gramma was the person I always called on April 30th and she would always remind me that grandpa had passed on May 1st. But we both knew he went to the hospital on the 30th. This year was especially hard when there was no number to call.

Her birthday passed last month and I tried hard not to think about all the things she still wanted to do.  I’m trying hard to do them for her.  I went to get the mail yesterday, a few days after my own birthday, and realized I don’t get cards from heaven. Gramma had always sent birthday cards signed “with all my love”. And this Sunday would have been my grandfather’s birthday.

Every year since 2005, I would always call gramma on his birthday with the exception of last year as we were all together celebrating my cousin’s wedding.  I sat with gramma for a long time and finally mentioned how grandpa would have loved to know his youngest granddaughter was getting married on his birthday.

My favorite part about talking with my grandmother over the years was all the stories.  Some I would make her tell me over and over again so I would remember.

I can hear her now, “Niki, don’t cry,” but I would give anything for one more goodbye.