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.

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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.

Chemo Port Surgery

June 18th started like most days, working out. I workout for me, for my mind and for my body. However I couldn’t eat anything since I had surgery at 9am.

The doctor had a cancellation so I was to come to the hospital ASAP. Dad drove my Jeep since his old Dodge had a funny smell that made me nauseous.

I was whisked away to a room, had to change into a gown and an IV was put in. I am very chatty and was joking around with everyone. Weird because I’m so socially awkward normally but at the hospital I’m hilarious. 😳😬🤣😜

The anesthesiologists told me that due to the size of my tumor, I would be conscious the whole time. Trying not to let my concern show, but secretly I was freaking the fuck out. I don’t want to be awake. I’m allergic to lidocaine. What were they going to numb me with?? This wasn’t a simple biopsy. This was cutting my chest in two different spots and splicing my jugular open to insert a catheter line, running a loop under my skin and over my collar bone. I prayed to myself, “please have strength of a warrior“.

I was bald, tears were leaking from my eyes and I was in so much pain. I could feel my own blood. I could feel the pressure, the pulling, the slicing, the stitching.

I am fairly certain I had nightmares for weeks about the pressure I felt during surgery. The doctor said I was a trooper but I HATED every second of that experience.

I remember my fingers flicking back and forth under the sheet covering me as I tried to control my breath. I was hearing Autumn from 80 Day Obsession reminding me to breathe. I was in so much pain. The port sits on top of a nerve line the runs across my chest. The same nerve I was initially complaining about when we went to the ER that life changing night. Every time they changed the position, the nerve shot pain deep into my armpit.

I had to have the placement checked via CT scan and then back off to the little post op room I went. I immediately hated my port. We are not friends, still four months later. It’s like a college roommate they place you with in the dorms; you don’t have a say in the matter and but you have to coexist.

Back in the room a nurse asked if I wanted pain medication and I said hell yes. Oxycodone was prescribed and I had taken one. I had never taken this drug before and by the time they wheeled me out to my father, I was high as a kite. It was probably worse than the surgery. Drugs have a pretty severe effect on me. I remember going through the Culver’s drive-thru thinking “I am going to faint” then thinking “I am going to puke”. I only took one more of those pills and it took three full days to recover from their side effects. I was seeing tracers and felt nauseous. It was hard to focus my sight and I just wanted to sleep. Between the chemo and Rituxin melting my tumor and hardcore pain meds, my kidneys and liver were working overtime… which was good because I sure wasn’t working. I had been off of work for 11 days.

My port was installed low, like two inches lower than most. The oncology nurses joked that the surgeon musta like my boobs. 🤣🤣 But since my port is so low, it causes pain daily. Working out is painful. Wearing a bra is painful. Laying on my side is painful. I HATE IT. And have asked my doctor every time, when can I have it removed, when can I have it taken out. I feel like a little kid, “are we there yet?”

This is a good photo taken four days after surgery of how low my port placement is and the tube that runs up to my jugular. I remember asking the surgeon what was the likelihood of this thing exploding out of my neck and me bleeding out… he said unlikely. I do workout pretty hard and thankfully it’s still in there. I noticed the other day, the tube that runs up to my jugular isn’t as prominent… not sure if that’s a good thing. I can just imagine it buried in my muscle and skin and when they go to remove it, something awful happening. I’m a realist… I plan for the worst.

But yes, I was working out two days after surgery. Just couldn’t move my right arm very much. Sitting around drives me bonkers and my routine has been wake up, workout for so long that if I don’t do it, even if it’s completely pathetic and modified, I get cranky. I need my workout to get my endorphins elevated and my lymphatic system flowing.

Overall I am grateful for the port. It makes infusions easy. After my first infusion, my arm were the IV was hurt for a week. Minus the port being painful itself, I don’t have any complaints. But I am counting down the days to get it removed. The doctor told me at our last meeting that if my PET scan is clear with no evidence of disease, we can schedule it to be removed. Part of my is scared though… what if cancer comes back, what if it spreads. But the other part is like bitch please, you met your out of pocket maximum this year, get that thing out ASAP!!

PET scan and results

After chemo on my grandmother’s birthday, Flag Day, I had my first PET scan. I was hungry as I couldn’t eat for 8 hours and wasn’t feeling well from all the chemotherapy drugs and tumor lysis syndrome prevention fluids. I felt full and kinda ill.

The PET scan uses radioactive dye to determine the stage of cancer I had. By now I know that my brain tumor is benign and unrelated to my lymphoma however I didn’t know if my cancer had spread to other lymph nodes.

It took a week to get the results and I was elated to find out not only was I simply Stage 1 X but the FISH analysis for Double Hit Lymphoma came back negative. The X is due to the bulky nature of my tumor.

I had never been so happy to be stage 1. I can beat this shit. I got this.

Then the neuropathy started. My fingertips felt like they were immersed in water too long. I also had a pain in my groin. Like a pulled hip flexor.

But I was stage one.

Game Plan and drug talk

Wednesday June 13th, my dad picked me up in his old Dodge. I was nervous. I didn’t want to die and I was annoyed with the wheezing and the persistent cough this tumor was causing. Since it was so large it was actually pressing on my Superior Vena Ceva. This was causing my severe headaches which I had been complaining about since March. We may never know how long my tumor was growing or what actually caused the cancer cells to start rapidly dividing. I did know that if I didn’t start chemotherapy immediately, I would probably die.

I have learned in my four short months is that everyone has cancer cells naturally occurring in their body. However the immune system and apoptosis typically keep them in check. Lymphoma is a blood cancer typically affecting the lymph nodes. B cells are a type of white blood cell called a lymphocyte. B cells may mature into plasma cells that produce antibodies to fight off infections. B cells originate in the bone marrow.

My cancer is based off the thymus gland. This is a small gland that sits on the heart. Now from what I gather, the thymus works with immature T cells, another type of white blood cell. This is where the little cells learn to fight off pathogens and activate the B cells to produce antibodies and remember the infection. The thymus completes it’s job in childhood and actually shrinks during puberty and turns fatty.

Something went seriously wrong with mine and it grew, a lot. We didn’t have exact measurements yet but we knew it was 11 centimeters by 11 centimeters and a few centimeters deep. HUGE!!! My cancer was very aggressive and needed to be treated immediately.

I had blood work drawn as I always do along with my weight and height. The doctor still didn’t have the pathology back from Mayo Clinic but were very concerned for my life. He wanted to start me on R-CHOP right away, for six infusions, three weeks apart. This is typically used in lymphoma patients and has a good response. (For those of you not interested in drug talk, skip to the end)

R-CHOP is the acronym for chemo cocktail I was about to receive. Rituxin (rituximab) is a monoclonal antibody. It is given with Benadryl since there are many allergy related side effects. The monoclonal antibodies attach to a specific antigen leaving the immature B cells alone. I had to take a tumor lysis Syndrome prevention fluid as well due to the bulky nature of my tumor. The Rituxin infusion can take up to four hours however by the end, that shit was speeding into my system in just over two.

C stands for cyclophosphamide. And I now know this shit is nasty. This is actually the last chemotherapy drug I get and takes about an hour. It is an alkylating agent. Since cancer cells don’t undergo to normal cell death when they run into each other, chemotherapy damages the DNA to cause cell death. Chemo works great on cells that are rapidly dividing, like cancer cells but healthy cells may also divide fast. Hair follicles, inside of the mouth and gut are also rapidly dividing. This causes hair loss, constipation, diarrhea, mouth sores and also low blood counts.

H stands for doxorubicin. It has a longer name but I know it as the red devil. It’s a ten minute push chemotherapy IV drug. It’s red. It causes my pee to be red. It’s a vesicant. Bad shit. It is known as an anthracycline antibiotic. It affects the hearts pumping ability… more on my heart later.

O stands for Vincristine (or Oncovin). This is a ten minute drip IV chemotherapy drug. It is also a vesicant. It is classified as a plant alkaloid.

P stands for prednisone or as a fellow cancer survivor calls it, the devil’s tic tac. Prednisone is a steroid with anti- inflammatory properties that will help prevent allergic reaction, prevent nausea and stimulate appetite. I would need to take 100mg a day for five days.

I would start the Rituxin that day and come back for my chemo cocktail Thursday. I had to take a few different prescription drugs as well to protect my kidneys and liver from the waste products of the massive tumor.

I had hair and eyebrows. This is what “healthy” Nicole looks like, prior to chemo starting.