Mind Matters: Caught Between Fighting and Surviving

Photo of me after my brain EEG. June and July have been full of tests, scans and doctor visits trying to determine what exactly is going on in my brain.

There is a thin line between fighting and surviving. 

Two years ago, I was fortunate to cross that line and enter remission. 

Remission left me floating in a sea of gratitude and awe at the impossible odds I had overcome, yet I was left with an unsettling feeling as I wondered what was next. 

Once cancer enters your life, either as a patient or caregiver, it seems to become part of you. 

No matter how many years have passed since your diagnosis, the worry and dread are hard to shake. 

Cancer has you constantly looking over your shoulder and second-guessing any symptom. 

Cancer gives time a new meaning and puts a new urgency to make the most of the moments you have left. 

As a survivor, I’m often caught between wanting to proudly share my story and wanting to forget cancer was ever a part of my life. 

 I often question whether I’m doing the right thing.

But each time I start to doubt my purpose, life has a way of reminding me how far I’ve come.  

Every time I start to wonder if I should continue to share my story, God has a funny way of showing me what a difference my experiences can make in someone else’s life.     

I believe situations happen, and people are put in our path for a reason. 

There are no coincidences. 

After a challenging first year in remission, I made it my goal for 2020 to build out my blog and focus on sharing my story across different websites and platforms to help support other cancer fighters.

I’m passionate about sharing my cancer journey and incredible success with immunotherapy because I believe my experience can help advance treatment for others.

Throughout my journey, I’ve found that the right information and the right time can make all the difference when it comes to cancer treatment. 

I had big plans to celebrate being cancer-free for two years. 

As one of this year’s Faces of Cancer at Northwestern’s annual Cancer Survivors’ Celebration in June, I hoped to celebrate my remission by giving back to other cancer fighters at Lurie Cancer Center through my Hopeful Warrior Project.

But life had other plans. 

My summer started with a bang with the news my concussion brought to light: a CT and MRI scan showed what appeared to be a benign tumor in my brain. 

After months of planning and anticipation at launching my Hopeful Warrior Project, the news of a brain tumor couldn’t have come at a worse time. Everything I was working towards was put on hold as I tried to come to terms with having a brain tumor.  

Thankfully, I was able to get a more detailed follow-up scan, which showed there was actually no definitive tumor. Still, some visible changes in my brain require continued testing and monitoring. 

But after months of lockdown, followed by challenging health news at the start of June, I decided I needed to take a break from social media.

It all became too much.

I disconnected from my page and my blog for a little while to focus on my health and continue to process everything that happened in just a few short weeks.

From vision, hearing, and neurological assessments to weekly physical therapy, the rest of June and beginning of July was a flurry of tests, scans and doctor appointments trying to get more answers to what is going on inside my brain.

I restarted neuro rehab to improve my lingering concussion symptoms; however, over a month after my concussion, I am still dealing with chronic headaches, nausea, brain fog, and severe neck pain. This is not unusual as several doctors told me, concussion symptoms can linger for months after an incident. 

Two weeks ago, I consulted with a neurologist at Northwestern who ordered an EEG of my brain to check for seizure activity that could potentially be causing me to pass out when under stress. 

My doctors believe that these episodes which caused my recent concussion, while extremely concerning, are most likely a result of my dysautonomia and underlying vasovagal syncope—not an underlying heart or neurological issue. However, we will know more definitely once I have the results of my EEG. 

There is no cure for vasovagal syncope. The symptoms can only be managed through a combination of diet and lifestyle modifications. Sometimes medication or surgery are needed depending on the severity of symptoms.

I am hoping I will continue to see my symptoms improve over time. Neuro rehab, somatic bodywork, and physical therapy are helping to build my strength and enhance my overall mental functioning. 

Each week, I feel a little clearer and stronger. I’m hoping I will continue to see my symptoms lessen as my therapy continues. 

Life has certainly been a series of peaks and valleys lately, but I’m starting to find the middle ground. 

As I continue to navigate the bumpy road forward feeling caught somewhere between fighting and surviving— I just want to thank you.

…for being here

…for reading this

…for praying and supporting me through it all. 

To learn more about my story and the inspiration behind my Hopeful Warrior Project, check out the recent podcast I recorded with the Neurologic Wellness Institute. You can also listen on Spotify or watch my interview below on YouTube.

Hopeful Warrior Project Update 

As my health continues to improve, I am now able to move forward with my Hopeful Warrior Project. 

Thank you to all of you who have sponsored a warrior bag or expressed interest in a partnership opportunity. I’m working on assembling my warrior bag so that they are ready to be delivered to cancer fighters at Lurie Cancer Center next month. 

I officially finished treatment on August 9, 2018, so my goal is to deliver the bags at the beginning of August to celebrate the two-year anniversary of such an important treatment milestone. 

Thanks again for all your prayers and positive vibes this month. 

Your support means the world to me. 

Learn More

About Dysautonomia

Neurological Rehabilitation

A Complete Guide to Manage Dysautonomia: Symptoms, Diagnosis and Treatment

Vestibular Rehabilitation Can Improve Dizziness After A Concussion

Battling Chemo Brain After Treatment

For decades, cancer survivors have experienced problems with memory, attention, and processing information months and even years after treatment. Because many of these survivors had chemotherapy, this has been called "chemo brain" or "chemo fog.” Early researchers assumed that cognitive problems were a result of chemotherapy alone. More recent research has suggested that the combination of chemotherapy and hormonal therapy, or even hormonal therapy alone, may cause cognitive change.

Source: National Cancer Institute

What do you do when you’re lost for words?

You know the feeling.

Maybe you’re desperately trying to make a point but can’t find the right word.

Maybe you’re trying to tell someone something but can’t remember an important name.

Maybe you were telling a story but lost your train of thought and now have no idea what you were saying.

Maybe it happens to you once or twice and you shrug it off.

But for those of us with chemo brain this is our daily reality.

Going through cancer affects your brain just as much as the rest of your body.

Maybe more.

Neurological issues are hard to pin down.

It can take years to identify the root cause of your problem.

You wonder is there really a problem with your memory or are you simply too stressed?

Maybe it’s both?

It’s hard to tell.

Cognitive effects of treatment can range from simply forgetting and extreme fatigue to difficultly multi-tasking. and staying organized.

It’s frustrating.

It’s embarrassing.

It’s not something cancer survivors always discuss.

But it’s our reality.

It’s a haunting effect of treatment that lasts years, even decades later.

Sometimes it never goes away.

But I’m here to say it CAN get better.

There is hope that these side effects don’t have to last forever.

The body is an amazing machine.

Our brains keep the engine running.

But just like any system, parts break down and become dysfunctional.

Sometimes things happen that send our systems into overdrive.

Other times, traumatic events happen that paralyze us and take away our ability to react.

So we freeze.

Our bodies go into shock.

Even years later, our bodies can react as if the event has just happened or is currently happening to us.

Traumatic events affect us all differently. 

There is no magic pill for treating trauma. 

You have to do the work to heal. 

Yes, our brains can become sick and break down,

Our bodies can feel so broken that we want to give up.

But I have also witnessed first-hand how they can be healed and rewired.

Functional medicine and neurological rehab helped give me my life back after treatment. 

After just a few months of therapy and lifestyle adjustments, I was amazed by my progress.

The underlying agitation and frustration that comes with constantly forgetting things was gone.

The uncertainty regarding my future was alleviated.

I could finally feel my body starting to heal.

I could visibly see the changes:

My vision improved.

My balance stabilized.

My strength was restored.

My digestion improved.

My anxiety lessened.

It wasn’t easy.

For a long time, I doubted it was even possible.

I thought I would have to get used to living this “new normal.”

Functional medicine, neurological rehab along with lifestyle and diet changes helped me regain a lot of cognitive function I thought I had lost due to my cancer treatment.

It isn't a total panacea for chemo brain.

But it’s a pretty good place to start.

I’ll be sharing tips and other resources in upcoming blogs and posts to help other survivors and their families get access to the same treatment options and resources that helped me. I was fortunate to regain a lot of my cognitive function in the first two years of remission thanks to the therapy I received. I am hoping to help others do the same.

 This is a big reason why I started my Hopeful Warrior Project.

Chemo brain affects up to 75 per cent of patients during treatment with 35 percent reporting symptoms post-treatment.

I am hoping to change that by helping connect local cancer fighters and survivors with the resources that have helped me the most.

Learn more: www.hopefulwarrior.com/project

Donate: www.fundly.com/the-hopeful-warrior-project

Sources:

Chemo Brain- American Cancer Society

A ‘new normal’ with chemo brain- Fiona ME Henderson, University of Derby

Neuro Rehab in the Chicago area: Neurologic Wellness Institute