Getting Diagnosed with Dystonia

Remission doesn’t stop the effects of cancer.

When treatment ends, the battle turns from physical to mental, as you try to reclaim your health moving forward.

Although I’m now two years in remission, I still struggle with the fears of relapse.

 Each time I feel a sore muscle or unusual bump in my neck, my mind immediately jumps to the worse possible scenarios.

 “Is this cancer back?…this is exactly how you were feeling right before getting diagnosed.”

 One of the first things I noticed while looking in the mirror one day was one side of my neck was raised higher than the other.

For a while, I thought it was just a bad muscle knot. I had spent the last three years carrying my twins around, so some tightness and a few sore muscles were normal, right?

But my symptoms quickly grew worse.

I was extremely fatigued, and my hands and joints were so weak and sore I was losing mobility.

At first, one doctor believed I had early-onset rheumatoid arthritis.

But a few months later, I noticed a large bump near my collar bone.

Soon I learned I had Stage 3 Hodgkin Lymphoma.

I responded well to treatment, but I still struggle with fears my cancer will return.

Thankfully, I have an excellent team of doctors and therapists who have been incredible at helping me cope with the effects of treatment. They patiently help reassure me I am still cancer-free, despite how hard the story in my mind tries to convince me otherwise.

Unfortunately, recent health challenges have made me more on edge.

Since treatment ended two years ago, I’ve dealt with several concerning health issues from irregular heart rate, vision changes, and frequent fainting. After a concussion in June, I’ve also been struggling with leg and hand spasms, chronic headaches, and extreme neck pain.

My neck was one of the main areas of lymphoma in my body, so it’s always been challenging to know if my residual neck pain is muscular, caused by enlarged lymph nodes or a result of my treatment.

Fortunately, recent scans showed I do not have a brain tumor as once feared, and my last scan in mid-September showed no evidence of lymphoma. I still have some enlarged lymph nodes in my neck, but my doctor believes that is most likely due to treatment and should lessen over time.

According to my oncologist, reaching two years in remission is a huge treatment milestone because now my change of relapse is about the same as the general population.

I’ve been doing my best to try to put the fears of relapse behind me, but I haven’t been able to shake the discomfort in my neck and some other troubling symptoms.

Getting diagnosed with dysautonomia and POTs last year helped explain some of my more concerning cardiac symptoms, but my chronic headaches and neck pain haven’t improved despite physical therapy and neuro rehab.

I’ve been unable to break my headache for more than a few hours each day.

I felt pretty discouraged until I came across a long-forgotten part of my family medical history a couple of weeks ago that gave me a clue to a potential cause of my chronic neck pain.

My chronic symptoms along with new family history led me to a related neurological movement disorder called cervical dystonia.

Cervical dystonia is a rare neurological disorder that causes painful neck spasms and abnormal head postures. It can also cause tremors and severe cramps in your hands and feet and impact your ability to speak.

Last week I was fortunate to get evaluated by a neurologist at Northwestern who confirmed I have dystonia. My doctor believes the dystonia was possibly caused by a combination of genetics, medications, and past surgeries in my neck area.

Unfortunately, there is no cure for dystonia, and without proper treatment, it can sometimes get progressively worse.

Thankfully, there are several treatment options, and I believe this new diagnosis will help explain many of my troubling symptoms and chronic pain.  

For years I have struggled with a variety of complex medical issues.

Now that pieces of my medical puzzle are coming together, I feel a strange mix of validation and excitement to finally be on the verge of some relief.

Later this week, I am scheduled for my first set of Botox injections to help relieve the painful muscle spasms in my neck.

While the thought of multiple injections to my neck, back and shoulders is pretty terrifying, many patients have reported a lot of relief from a combination of Botox and physical therapy, so I am hoping for the best.

After all, a diagnosis can be a double-edged sword.

The upside is your struggle finally has a name and a possible game plan. The downside is a diagnosis can leave you feeling a bit discouraged, dependent on long-term care or, at worst, stigmatized by a label.

A diagnosis can lead to many possible outcomes. But it does not determine your worth or future success.

I am hopeful this diagnosis is simply the start of better days to come.

Learn more

Cervical Dystonia

Dysautonomia/POTs

Hodgkin Lymphoma Signs & Symptoms

My Treatment

Botulinum Toxin Injections for Dystonia

Hopeful Warrior Project Update  

Thanks to your generous support, I was able to donate 30 warrior bags to Northwestern’s Supportive Oncology Program at the end of September. It was the perfect way to celebrate being two-years cancer free and help support other cancer fighters at Lurie Cancer Center.

Click here to see pictures and learn more about the Hopeful Warrior Project.

To My Fellow Warrior Who Was Just Diagnosed with Cancer

To My Fellow Warrior Who Was Just Diagnosed,

3 words can change everything can’t they?

I’ll never forget the soul-crushing anguish that washed over me as soon as I heard the words, “You have cancer.”

I’ll never forget the weight I felt carrying the news of my dreaded diagnosis and having to tell those I love and care about, especially my three young children, just how sick I was.

But I’ll also never forget the bear hug I received from a complete stranger after I broke down in tears at my children’s school explaining I had just been diagnosed with cancer.

I’ll never forget the outpouring of love and support my family and I received after the news that I had cancer spread.

Know that it’s okay to be terrified. It’s okay that your tears won’t stop and the worry won’t leave.  And even though you don’t feel like it now, you are strong and incredibly brave.  You are not alone in this fight. You CAN get through this. And you WILL.  Many times you may wonder how you will go on.  But I’ve learned the HOW isn’t important. It’s ultimately your WILL that matters.

Your willpower is more than staying positive. It’s digging down deep into your primal will to survive. It’s focusing on the WHY you are fighting when you start to feel like WHY should I keep going? It’s focusing on WHO you are fighting for when you feel like you are losing yourself amidst all the pain and uncertainty of this battle.

Cancer has been by far the worst thing that has happened to both me and my family, but in many ways it has also been a blessing. Overcoming cancer has caused me to view every day as an opportunity rather than just an another obstacle I have to get through. It has brought me closer to family and friends and helped me to realize the depth of my own strength.  And it has taught me to see and appreciate my own beauty even when I hardly recognize the face staring back at me in the mirror.

Although the testing, treatments, procedures and waiting for answers seems like it will never end. I promise you it will.  Believe it or not, this crazy, wild ride will one day become a blur in your rearview mirror.  And even though it seems like cancer has taken everything from you—YOU, my warrior, are still here.

Your story isn’t over yet.

Fight on!

The Hopeful Warrior