Climbing Beyond Cancer

Sunrise on top of Doe Mountain Trail in Sedona, Arizona

Surviving cancer is like hiking a mountain.

Your climb begins the day you’re diagnosed.

At first, a giant obstacle is all you see.

The challenge ahead seems impossible.

“How will I make it through this?” you wonder.

You don’t know how, but slowly you start putting one foot in front of the other.

Before long, you hardly recognize your surroundings.

Instead of counting by days and weeks, you start to measure time by the number of treatment cycles.

The life you left when you started this journey seems so distant now.

A series of uphill struggles led you to this point, but there isn’t always a clear-cut path.

Then you start to notice footprints scattered in the rocky dirt of those who came before you.

Although this journey can be lonely, knowing others have been in the same place and survived gives you hope.

You don’t know how you’ll make it to the other side.

The only certainty is you must keep moving.

This journey pushes you to your limits.

Bodily changes.

Emotional challenges.

Debilitating side effects.

You feel every emotion from grief and terror to a deep sense of determination.

You begin to question everything and every relationship in your life— especially your connection to God.

Many times, you feel like giving up.

But you keep showing up regardless of how you feel.

Surviving cancer is like hiking a mountain.

Little by little, you start making headway.

The journey down can be just as challenging as your climb.

Progress isn’t always obvious.

Sometimes, it’s a series of switchbacks that slowly direct you to where you need to be.

With the support of family and friends and knowledgeable doctors, you’ll find strength, courage and surprising beauty along the way.

You gain far more than you lose.

You earn a new perspective and foster a deep sense of knowing— you can face and survive— more than you ever imagined.

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.

Looking Back: 7 Lessons I Learned Fighting Cancer

Looking back on things, the view always improves.

Two years ago today, I finished chemo.

 It’s one of those anniversaries you want so much to celebrate but also forget. 

 I’ll always remember the thoughts racing through my head as I feverishly rang the bell I brought from home to help mark the end of my treatment. 

My body was weary from battling cancer for 9 months, but my spirit was ready to reach the finish line and celebrate my hard-won victory. 

Reaching the end of treatment is a huge milestone. 

Although I had reached remission months earlier—now I finally felt like I could take a breath and celebrate beating cancer. 

As treatment went on, I silently wondered how much more I could take.

I worried how much worse the side effects would be as time went on.

Nausea. Pain. Fatigue. 

“What if it gets worse?” kept echoing in my head. 

I thought the feeling of uneasiness would end once I reached remission.

I hoped the dread would dissipate once treatment ended. 

It didn’t.

The worry simply comes out in different ways now.

It’s the anticipation of watching my hair grow back.

It’s the anxiety that proceeds my doctor visits.

It’s the crippling dread that follows any unusual symptoms. 

I’m cancer two-years post-treatment and while I’m now cancer-free—my mind is never free from worry about cancer. 

Although I want to put the memory of my treatment in the past, this cancerversary is an important marker to celebrate because it’s a reminder of just how far I’ve come. 

As much as I want to forget cancer was ever a part of my life, I believe helping other cancer fighters is one the best ways to honor this treatment milestone.

Looking back on these last two years in remission, here are my seven biggest lessons from cancer: 

1.     Think of your illness in terms of waves not war. 

Battling chronic illness is often related to going to war. We are called fighters and warriors. However, while the war-torn feeling and adrenaline from constant fighting resonate with many—life isn’t always about fighting. It’s important to think of your illness in terms of waves not war. There will be ups and downs. Chaos and calm. Uncertain. Unpredictable. Uncomfortable times. But learning to navigate this new life builds resilience. After all, we all may face the same stormy seas in time, but we are not in the same boat. 

2.     Cancer treatment is constantly evolving. 

Cancer treatment has come a long way. Now, new developments like immunotherapy are changing how cancer is treated. Take the time to research your options and available clinical trials. It’s important to remember cancer treatment affects everyone differently. Some people lose all their hair. Others may not. Some people experience many difficult side effects. Others deal with very few. Although I lost my hair and felt extremely weak at times, I was still able to work part-time and care for my three children.

3.     Never be afraid to get a second opinion. 

There is no one-size-fits all approach to health. There is not always one answer to every issue. What works for one person won’t necessarily work for everyone. It’s so important to be your own health advocate. Never be afraid to ask questions. Your diagnosis may not always be correct. You shouldn’t feel rushed to decide about treatment, even when your health challenge is severe. You’ll never regret getting a second opinion. At the very least, it may simply confirm your treatment choices and give you peace of mind.  

4.     Build a support network. 

Being chronically ill or going through cancer treatment can be one of the loneliest experiences in the world. While you may feel alone at times, focus on building a strong support network around you — family, friends, partners, doctors, psychologist etc. Find doctors and other health professionals you can trust and consult with during treatment and beyond. A strong support network is critical because you will continuously have to communicate with them and lean on them during uncertain times. 

5.     Connect with other survivors. 

Social media platforms like Facebook can be a great way to connect with other cancer fighters. One of the best things I did shortly after getting diagnosed was to join an online support group. There, I was able to ask other fighters questions that my doctor couldn’t necessarily answer like how to break the news to friends and family, why I should get a port for treatment and the best way to prepare for my first chemo. Simply type in your health challenge or cancer type in the search bar on Facebook, and you will find different support groups to join. Now, Facebook groups also include the ability to connect with others directly for one-on-one mentoring through the messenger app. Outside of social media, Imerman Angels and I Had Cancer are great ways to connect with others and find additional one-on-one support. Getting connected with other fighters and reading the stories of other survivors gave me the added hope that one day I will reach remission too. 

6.     Focus on what you can control. 

In times of great stress and uncertainty, it’s easy to feel helpless and even hopeless. But it’s important to ask yourself, what’s most likely to affect you? What can you control, and what is impossible to control? Keep asking yourselves these questions. I’ve found the key to coping with anxiety and uncertainty is learning to focus on what you can control. Try to use your thoughts as an anchor. It’s important to be aware of all sides of a situation but only pay attention to the things you can directly control. Feeling overwhelmed? Start by organizing the space around you. Feeling stuck? Move your body. Feeling depressed? Get out in nature. You may not always be able to change your situation, but you can always focus on the things you can control.  

7.     Staying grateful and curious helps you find the silver lining. 

It is normal to think there’s no hope. No better tomorrow. To want the pain to end. It’s understandable to worry if things will keep getting worse. But I’ve found gratitude and curiosity are the best cures for uncertainty. As difficult and challenging battling cancer was, there was always something to be grateful for, even on my worst days. A warm blanket, fuzzy socks, a text from a friend—taking the time to write down 5-10 things you are grateful each day is a great way to stay positive and shift your perspective. Staying mindful of the words you use to describe your situation is also important. When you become aware of the words and phrases you are using, it becomes easier to spot negative thoughts and rephrase them into more positive ones.  

 Two years later, my treatment is starting to feel like a lifetime ago. 

While the worry and dread are still there—things are starting to change. Now, instead of wondering if things will keep getting worse, I’m asking myself if this is simply the start of things getting better. 

Hopeful Warrior Project Update:

I’ve been busy putting the finishing touches on the warrior bags I will be delivering to newly diagnosed cancer patients at Northwestern later this month. Thank you to all those who sponsored a bag as part of my Hopeful Warrior Project. Because of your generosity, I was able to put together over 30 warrior bags. Learn more and see more pics here.

Related Posts:

Ringing the Bell: Celebrating Milestones During Treatment

10 Tips for the Newly Diagnosed

Immunotherapy Nearly Cleared My Stage 3 Cancer Before Chemo

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

Scars Are Beautiful Reminders

Scars remind us what hurts us can also lead to what heals us.

It doesn’t take more than a glance in the mirror to let me know how much life has changed.

I’m slowly getting used to the face staring back at me.

No matter how much I try to resist the urge, most days my eyes can help but fixate on the jagged scars on my neck and collarbone.

These scars are a vivid reminder of how far I’ve come on my journey and how far I still have to go.

Scars are a reminder that trauma and transformation can coexist.  

As much as I want to conceal my scars, their presence reminds me imperfection is a natural part of life.

My scars tell an incredible story of survival.  

Each scar scattered across my body is a little signpost, reminding me that the pains of my past will always be with me— yet life goes on.

No matter what odds may be stacked against you, healing is possible.

Our scars remind us that there is more to life than simply surviving.

Our scars remind us there is another side to our pain.

Our scars remind us that our pain has the power to separate and unite us.

Our pain can lead us to discover our purpose and our people.

It’s a matter of how we view our scars.  

What will you discover about yourself when you learn to embrace pain rather than run away from it?

In a strange way, as I learn to embrace the painful events of my past, I’m becoming thankful for my scars.

This May I was blessed to celebrate being two years cancer-free from Stage 3 Hodgkins Lymphoma. 

Each year I am blessed to celebrate as a survivor, lets others know they can survive too.

The Power of Growing Slowly

365 days of hair growth in this picture. (May 8, 2019-May 8, 2020)

“Be not afraid of going slowly, be afraid only of standing still. ”

— Chinese Proverb

There is power in growing slowly.

Losing my hair to cancer two years ago taught me that moving on and returning to our old ways is not always possible— but moving forward is.

Watching my hair gradually grow back has taught me that growth is not always measurable, but whether we realize it or not…

Each day we are constantly changing.

But it’s how we measure our personal growth that makes all the difference.

Real growth is not always visible.

After my treatment ended, I so desperately wished I could snap my fingers and my life and appearance would return to my “normal” pre-cancer days but watching my slowly grow back has taught me a valuable lesson in patience and self-love.

Transformation takes time and when we focus too much on our end goals, we miss out on the process of growing.

We tend to overlook our tiny successes because we become frustrated, we haven’t achieved our end goal yet.

Life doesn’t always give us want we want; but when we look closely enough, we can see we are always being given opportunities to grow.

And our growth often occurs in darkness.

Just as a tiny seed struggles to reach the light; our challenges often push us out of our comfort zones and require us to adapt, grow or fall behind.

And this growth is hard.

Sometimes it feels like parts of us are dying.

Maybe those parts are dying.

But from the remains of what was, we can start to rebuild our lives.

This last year taught me that the in-between stages are some of the hardest parts of growth.

But when we are being stretched and challenged in a new way and pushed far out of our comfort zones—that’s when the most growth happens.

All of us must continuously grow and adapt throughout our lives.

Slowing down enough to enjoy the process of learning and growing helps us find joy in our individual journeys.

In the end, it doesn’t matter how you grow or how long it takes; all that matters is that you are growing.

May we continue to grow in faith and not fear.

May the love in our hearts and for one another continue to expand.

May we continue to move forward; despite all the obstacles in our path.

---

On May 1, 2020 I was blessed to be able to celebrate 2 years cancer-free!

Here is a look back at some of the highlights from the last two years of my journey:

Surviving Suicide: Overcoming Grief and Loss

Two?

People often find the news hard to believe.
It’s not the fact that I am a mom of three, including TWINS, that leaves them stunned.
It not that in just TWO days I will be cancer-free for two years now that leaves people speechless.
It’s the fact that I’ve lost two loved ones to suicide and nearly lost myself too.

My story is more than my journey with cancer.

My story is not one that I can easily share but I do my best to write and speak about it when I can because I know that’s one of the main reasons I’m still here.

A big part of my journey is overcoming the grief and heartache that comes with the pain of losing two loved ones to a tragedy that I now believe could have been preventable.

I was reminded about my family’s legacy of loss when I heard the news of a coworker’s unexpected death this week.

Due to the untimely and tragic nature of her passing, there was a lot of immediate speculation, shock and heartache as the news of her death spread.

The pain and stigma surrounding losing a loved one to suicide clouds their memory and makes their untimely passing so much harder to accept.

As if their death wasn’t hard enough, now you are faced with a new level of grief that few understand.

There are often no words for this type of loss.
Just like when someone you love is diagnosed with cancer—words can’t seem to touch the gravity of the situation.
So many of us are at a loss of what to do or what to say when it comes to mental health, especially our own.
We hide behind the “fines” and “I’m good.”
But if what’s going on in the world right now is teaching us anything is that at the most basic, primal level we are all in this together.

We are all scared out of our minds while doing our best just to survive.

Part of the reason I began blogging about my journey with cancer over three years ago was to also be able to open about my struggle with mental illness.

I started to speak up about mental health to help break through the silence and stigma around suicide that has taken far too many of our sons, daughters, sisters and brothers.

I continue to reach into my vault of heartache from my family’s legacy of loss because I believe my grief can be channeled for good.

I’m continuing to share my extraordinary losses and gains, whether they come in twos or more so that hopefully, one day, my words are met with a “me too”.

I keep sharing the uncomfortable details of my past that I wish I could lock away and forget about, because if it can help save just one life then it was worth it.

My journey with cancer and mental illness has taught me that many of us are fighting silent and invisible battles every day.

Some we lose. Some we win.
But our pain always has a purpose.
Sometimes you can’t find the words to say and that’s okay.

You don’t always need to know the right words to say.
Sometimes all you need to do is be brave enough to ask for help and to take it.
All it takes to help your family or friend who is struggling right now is an open mind and heart and the wilingness to listen to their concerns without judgment.

Check on your family and friends. Let them know they are not alone.

Reaching out today could create the ripple effect of kindness and bring the hope we all so desperately need.

*** If you or someone you love is struggling right now, please call ‪1-800-273-TALK‬ or text HOME to 741741

Faith Over Fear

We are all scared.

Are you walking in faith or are you reacting out of fear?

Fear is fed by doubt.
Faith is led by trust.

When we feed our faith, we stop fueling our fears.

Fear keeps us trapped in the small details, while faith gives us eyes to see the bigger picture.
My journey with cancer showed me our greatest fears can become our greatest blessings.

It is up to us to choose faith over fear.

We must always remember:

Where God guides, God provides.
While we are waiting, God is working.

It’s time to stop trying and start trusting.

Better days are coming.

Healing is Not Linear

“Some people cannot be cured, but everyone can heal.”

Healing is not a linear process, but rather, more of an upward spiral. You process things cyclically and each time it comes around, you peel back another layer and get closer to your core.

Healing is not linear.

But nothing in life ever really takes a straight path, does it?

Rivers wind.
Valleys dip.
Branches bend.

Many times, in my health journey I thought I was coming to the end, only to realize it wasn’t actually the end— it was the start of a new beginning.

Is there a good time to get cancer?

No.

But I think I came pretty close.

By the time I was diagnosed back in early December of 2017, I was showing signs of advanced cancer.

When I was told I was Stage 3, part of me felt guilty I had let my health reach this point. But I ended up getting diagnosed at the perfect time because it allowed me to take part in a new immunotherapy clinical trial.

Had I been diagnosed sooner, I would have missed this opportunity. I believe this trial is a large part I’m still in remission today.

It’s funny how things tend to work out for the best, even when all can seem lost.
One unexpected turn and it turns out you were exactly where you needed to be all along.

I’ve found that when we are worrying all is lost, God is working.

Just as our heart rate rises and falls, God draws straight with crooked lines.

We may not always see the big picture, but God sees the entire canvas.

We often expect the events in our life to unfold in a linear way.

We believe we must go from point A to get to point B.

We believe we must have XYZ in order to be truly happy.

But, my journey has taught me there are no short-cuts to coming full circle.

Healing takes time to unfold.

Each arc in the path of our journey is an important part of our story; without those experiences, we wouldn’t be the person we are today.

Maybe this struggle was sent to help anchor your faith?

Maybe what wounded you was meant to help remind you of your true strength?

It may not make sense now, but one day it will.
There is purpose is our pain.
There is meaning behind all this madness.

I’ve found that is only in overcoming ourselves that we able to help others heal too.

Laughing Through the Pain: Funny Cancer Memes

If you can laugh in the face of adversity, you’re bullet-proof. - Ricky Gervais

I’m a little under a month away from my next scan.

 It’s a big scan because if it is clear, I will be celebrating being 2 years cancer-free on May 1st, 2020.

 As soon as February began to fly by, I started to notice a shift.

The nagging “scanxiety” is back.

I feel a sudden tightness in my throat as my appointment creeps closer on the calendar.

Countless tests and endless waiting are some of the most difficult and mentally exhausting parts of cancer treatment and remission.

I try to look at my scan as another hurdle I must pass on my journey to long-term remission.

I can’t change the fact it’s coming and I can’t avoid it.

But I’ve learned that it’s best not to focus on my scan until it’s right before me.

Working myself up over the what-ifs and possibilities of relapse won’t help.

I do best mentally when I stay productive and distracted with work, housework and my kid’s activities so that I don’t start to dwell on all the possible outcomes of my next visit.

Trying to find a little humor in the situation always helps too.

One thing I like to do is keep a collection of memes on my phone so that when I’m feeling a little down or anxious, I can quickly scroll through them for a little pick-me-up.

Laughter really is the best medicine!

So, I thought I’d share some funny memes about cancer and chronic illness to hopefully brighten your day as much as they did mine.

Music Has the Power to Heal & Connect Us All

What if hospital bands came with special perks for patients?

“Music has healing power. It has the ability to take people out of themselves for a few hours.”

— Elton John

Getting diagnosed with cancer feels like you were just admitted to a special club you never wanted to join.

But what if that were different?

What if the hospital bands we are given when we are admitted come with special perks like meal discounts, free parking and other local perks?

When you’re going through treatment, you have a lot of time to sit and think while you are getting your infusions. I liked to tell myself during treatment that just because my body may be stuck in this hospital bed or infusion chair, my mind can still grow, and my heart can dream BIG.

One thing I liked to do during this time was to listen to music or podcasts to escape my present reality.

Music has the power to heal and connect us.

Do you remember the days when you used to spend hours waiting for your favorite song to come on the radio, just so you could record it on a tape?

Who else remembers sitting for hours at your computer downloading new music to craft the perfect mixed CD?  

Friends and family that know me well, know that I love sharing my mixed CDs and playlists AND I have a sound track to match just about everything.

So, in honor of Valentine’s Day and to say thanks for all your love and support, please feel free to check out and download my shared playlist on Apple Music, “Love to Heal.”

Click here to play my shared playlist.

Let me know in the comments, what songs you like to listen to during treatment or what song you would add to this mix!

Ponying Up: Coping with Hair Loss & Regrowth

“Be not afraid of going slowly, be afraid only of standing still.” - Chinese Proverb

It’s not just a ponytail.

From my roots to my wiry ends,

Each strand on my head has survived to tell quite a tale.

It took two full years to get to this point.

Through many cycles of death and regrowth.

Wispy and wild, to shaved mullet and the ‘mom bob’,

No choice but to make peace with my changing appearance.

The mirror, both friend and foe,

Reflecting just how much everything has changed.

Strands turned into clumps;

Clumps soon became handfuls.

Losing a little bit of myself with each broken strand.

“It’s just hair.”

I tried to reassure myself.

“It will grow back.”

Healthier, thicker, maybe even a different color?

“All this hair loss means the chemo is really working.”

I tried hard to find the silver lining.

Not having to pay to get my hair colored or highlighted.

Not having to spend hours dying, styling and fussing with it.

All the time and money I saved.

My hair is a crowning achievement of womanhood.

Losing my hair meant saying goodbye

To the version of ME

I had known my entire life.

Accepting the painful reality,

The cancer patient in the mirror is really me,

Head wraps, scarves and beanies,

Painting in my eyebrows, ensuring my wig’s always secure.

How I longed to be able to run my fingers through my hair without the fear of falling clumps.

How I missed being able to tie my hair back and let it down after a long day.

How I forgot the feeling of my ponytail swaying with my every move.

 No, it’s not just another ponytail.

Every inch is a marker of progress and a sign of resilience.

From the turmoil of what was; the new me is taking shape.

After unimaginable pain and destruction,

Change has taken root.

It’s not just another ponytail.

Each millimeter of hair growth,

A tangible symbol of healing and progress.

One step closer to long-term remission,

Transforming my treatment into a distant memory.

It’s not just a ponytail.

It’s more than just hair.

It’s a symbol of hope,

Reminding us that our comeback

Will always be greater than our setback.

Here for Life

 As the wind and rain scatter seeds that bloom into flowers, spring is a time for growth, renewal and the celebration of life.

Springtime, especially the month of May,  has always been a special time for me and my family. From meeting my husband to birthing my twins and going into remission —the month of May brings lots to celebrate and be grateful for.  

May also brings Mother’s Day, a time of remembering and celebrating the moms and special women who have shaped our lives.

Just as Mother Nature brings forth new life each spring, in becoming a mother to my three beautiful children, I’ve learned that motherhood is a time when we are called to be both a vessel and to be a passage. No matter the length of time, whether you carry a child in your womb or now in your heart—both ache the same. To be a mother is to pour yourself out over and over out of love. To let yourself be broken open so that others might draw forth life.

I’ve come to realize that regardless of whether or not we are mothers—all of us are vessels in some way. Just as a mother’s body brings forth new life; we all carry things—both tangible and intangible within us throughout our lives. They are the seeds and weeds that build us up and weigh us down. At times they can even break us wide open. Some of them are unwanted. Some of them we’re not even sure how they got there.

Over time this emotional cargo builds quietly and steadily that often, we often don’t even realize how heavy the weight we carry has become. Day after day, week after week, year after year, it slowly mounts on our backs, our hearts and the recesses of our minds. Over time, we begin to wonder why we are so tired or why we feel so emotionally worn-out. This is because we often underestimate the weight of the things we carry within us. We feel the consequences, but don’t know the root of the suffering. The question soon becomes, how do we solve this? How do we begin to unload such a burden?

Just like the moon, we all go through periods of emptiness, to be full again.

Some things we may be able to get rid of— we can unload some of the weight. Some of our loads are more noticeable than others. Some of the things we carry are given to us, placed upon us, sometimes even dumped on us. These are the things we don’t have any control over. They often have deep roots in our family trees. These are the things that we carry that our parents or other family members gave us. Things we’d never choose to carry on our own like traumatic loss, mental illness, or abuse from a family member.

Some of the things we carry, like suicide, will be with us forever.

 The impact of this type of loss carries a strange kind of presence. However, I have come to learn that the only way to carry the gravity of this immense loss is by accepting and surrendering to the pain so that you can move through it rather than constantly fight against it.  

May is also Mental Health Awareness Month.

Nearly 20 years ago it was in May that my family first encountered the tragic effects of suicide. In late May of 2000, my aunt, a former police officer, lost her battle with depression. My aunt’s tragic death sent shockwaves of grief and depression rippling through my family. It is said that the person who dies by suicide dies once, but those left behind die a thousand deaths, trying to relive those terrible moments and understand…why?


While we may never know or fully comprehend the ‘why’ behind a tragedy like suicide, it’s important as survivors to change the “Whys” to “What can I do now?” by taking action and getting more involved in our local communities. The reality is 1 in 5 adults in the U.S. (46.6 million) experiences mental illness in a given year, and suicide is the 2nd leading cause of death for people age 10 to 34.  I truly believe it is by raising awareness for mental health that we are able to help establish broader community support for those struggling with mental illness.

I’ve been blessed to be surrounded by incredibly strong and resilient women my whole life.

Women who continue to love openly and deeply, even though their hearts have been shattered by unimaginable loss with the untimely deaths of their children. Yet, despite their inconceivable grief and pain, they continue on, grounded in part by their unshakable faith and the love and support from their family and friends.

Grief over losing a loved one knows no timetable, especially when they pass tragically. Losing a loved one to suicide compounds this by adding another layer of confusion, shame and guilt that they missed the signs or could have done something to prevent it.

 It’s for this reason that I dusted off my running shoes and ran in my first 5K this weekend—SPS Services of America’s Here for Life Run in honor of suicide prevention. While at times I walked more than I ran, no matter how small the step or slow the pace, any forward movement is progress and one step closer to becoming whole again.  I’ve come to learn that whether you carry your life or your life carries you, in the end, all that matters is whether or not you are going in the right direction.

We all struggle but we don’t have to face our struggles alone. 

Although the stigma surrounding mental illness often urges us to remain silent, it is only by sharing our struggles and our triumphs over our mental hurdles that we gain true resilience while helping others in the process.

Overcoming cancer and battling my own mental health struggles has taught me that we all go through periods of losing ourselves…only to find ourselves again.

I have learned that like the moon, I too must be empty and almost invisible so that I can grow to be glowing and full again.

The feeling of extreme emptiness comes in many forms.

Some call it depression. Loss. Others call it grief.  

No matter what we call it—we all face similar struggles. The older we get, the more we lose; this is the law of impermanence. We lose loved ones, cherished dreams, physical strength, work, and relationships. Often, it seems like loss upon loss. All these losses bring up enormous grief that we must be prepared to embrace completely if we are to live with open hearts.

Ram Dass and other spiritual teachers often encourage us to surrender to the experience of our pain and grief.

They say that to counteract our natural tendency to turn away from pain, we must open to it as fully as possible and allow our hearts to break. We must take enough time to remember our losses –friends or loved ones who pass away, the death of long-held hopes or dreams, the loss of homes, careers, or health we may never get back again. Rather than close ourselves to grief, it helps to realize that we only grieve for what we love.

Grief passes in time— yet the time it takes varies by person. 

It is often said that the grief process is more like a spiral, bringing us to a place of release, decreasing for a time, then continuing on a deeper level. Many times when we are grieving, we think that it’s over, only to find ourselves swept away by another wave of intense feeling. Over time we soon realize that these deep feelings don’t disappear completely; the pain of their loss merely transforms us. Ultimately, we soon realize love is stronger than death, and our loved ones are indeed still with us—just in a different form.

Life is full of peaks and valleys; unfortunate twists and turns. Highs and lows. Death and rebirth.

Time and time again we are forced to make difficult decisions and say goodbye to those we love. We are repeatedly broken apart, over and over, and through the cracks we catch glimpses of the mysteries of living and dying.

The cycles of nature remind us that nothing is permanent, and although we may be in the midst of a difficult season right now, relief will soon be here; if we just hang on a little longer.

While the things we carry may define us, we are equally capable of defining them. Whether we are currently weighed down with depression, anxiety, loss or illness; ultimately the first step to relieving our burden is opening up to it.

It is only by opening up to these emotions and fully feeling them, that we are able to move past them.  I’ve found by opening myself up and sharing my story; my struggles with depression, anxiety, suicide and loss, it helps ease the burdens of others and lightens the weight on my shoulders too.

“Maybe I can’t stop the downpour, but I will always join you for a walk in the rain.

”

Read More about Coping with Grief on my blog, Unpacking Grief: The Ball & The Box Analogy.

Sources:

Mental Health By the Numbers- NAMI

Ram Dass Meditates on Learning to Grieve- Ram Dass

What I Learned a Year into Remission

May 1st, 2019 marked 1 year in remission from Stage 3 Classical Hodgkin’s Lymphoma.

“In the depth of winter, I finally learned that within me there lay an invincible summer.”

— Albert Camus

A year ago I got the call saying my latest scan showed there was no cancerous activity in my body. I officially made it to the other side of my diagnosis, but I still had 4 months of chemo left.

A year into remission, I’ve found hardest part of remission is simply being. During treatment the goal is to reach remission but once you do, you’re often left feeling...okay now what? What do I do next? Resuming your old ways seems impossible. So ...much in your life has changed. Some things for the better. Some for worse.

My cancer journey has taught me accepting the changes— both positive and negative are part of healing. Healing is a paradox. It’s a constant push and pull between watching your appearance drastically change while celebrating any progress you make towards healing. Because all these bodily changes indicate something very powerful is happening, right?

I had big plans to celebrate my first year of remission. I planned to run in my first 5K at Northwestern next month. But as I started to train and push myself to get into shape I soon realized my body isn’t ready…YET 😉

So this year I may walk the Northwestern’s Cancer Survivors’ 5K instead of run but I’ve decided any positive change is PROGRESS. Instead of pushing myself to accomplish lofty goals, I’m giving myself grace. Grace to not push myself so hard and enjoy the healing process one day at a time.

Healing is becoming whole again and that wholeness comes in many forms. We are shaped by our positive and negative experiences. But I’m slowly learning it’s how we find balance that truly makes all the difference.

Today, I’m so grateful to be able to enjoy dinner at home with my family. We’re counting our blessings and hugging each other a little tighter tonight. I hope I am fortunate to count my remission by the number of years but until then I am learning sometimes all you can do is not think, not imagine, not obsess. All you can really do is take a deep breath and have faith it will all work out for the best.

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If you want to donate or join me next month for the Northwestern Cancer Survivors’ 5K please visit my team site: https://secure2.convio.net/nmhc/site/TR/Walk/EVE_LCCWALK…

Thanks for your continued prayers and support!

Scanxiety: 6 Ways to Cope

“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety. So MANY thoughts and what ifs course through my brain. SO hard to shut it off.” – Katie Edick, METASTATIC AND MAKARIOS.

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One of the hardest parts about cancer is the waiting. Waiting for results. Waiting for answers. Waiting to know if you’re in remission or the fight is still raging on.

 Going through cancer treatment is like being on a giant emotional roulette wheel that spins you around for a few days and then shoots you out the other side. Land on red, you’re in for another trip to Cancerland; land on black, you have three more months of freedom  until your next scan. Couple that with my tendency to pass out from needles/ stress and you have a recipe for some serious scanxiety. Fortunately, my life-long battle with anxiety has taught me some good ways of coping with such gut-wrenching uncertainty.

Here are 6 ways to cope with scanxiety:

1.       Sometimes, the unknown is the greatest cause of our anxiety. Cancer treatment brings a new level of uncertainty to your life. If you are unclear about anything from what to expect during the scan, to when and how you can expect to receive your results, or what those results might mean, don’t be afraid to ask your doctor. I’ve found having a clear understanding of what you may or may notexperience allows you to be better prepared and often helps calm your mind.

2.       Distraction is often the best antidote for anxiety. Before my scan, I make sure to watch some funny videos or clips of my favorite movies. I also listen to music while waiting for my appointment to help relax my mind and shift my mindset. After my scan, I do my best to stay active and preoccupy myself with work, or exercise or household projects. Yoga and walking meditations are some of my favorite ways   to stay active when I’m not able to do more strenuous exercise like running.

3.       Focus on your breathing. During my test, I keep my eyes closed the whole time and focus on my breathing. Fast, shallow breathing increases anxiety. I make sure to take a big deep breath and hold it, then slowly breathe all of the air out of my lungs. Once I get that breathing down I add a mantra. A powerful mantra I love to use is “I am (breath in, pause, long exhale) my breath”. This helps me quiet my anxious thoughts and stay more present.

4.       Remind yourself this is only temporary. Worrying can be a great distraction but it really never solves anything. Worrying my cancer will return or that it has returned robs me of precious moments. Moments where I’m still very much in remission...so why waste that time worrying about something that may or may not be true?  Worrisome thoughts will arise but I do my best not to entertain them for long. Instead I try to shift my focus to the things I can control each day and make those my priorities. I remind myself to be grateful I’ve reached remission, no matter how long it lasts.

5.       Prepare for the worst but visualize the best possible outcome. Scanxiety often feels like a rollercoaster of hoping for the best but preparing for the worst. Creating a strategy for the worst-case scenario can give you a better sense of control. Cancer often makes you feel powerless, but creating a basic action plan just in case can help you regain your power as well as help you maintain a more optimistic and resilient attitude.

6.       Your mind is more powerful than you realize. Visualization and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the reassurance you need to overcome your scanxiety.

Remember, while we can’t control what is happening to us in life, we are always in control of how we respond to what’s happening.

To the Doctor(s) that Misdiagnosed Me:

Throughout history, doctors have often been looked up to as gods for their ability to heal others. But even the best and brightest people make mistakes. Upon graduating from medical school doctors take a Hippocratic Oath professing to “first do no harm”. But in certain cases, it is believed by many doctors that it may be better to do nothing rather than intervening and potentially causing more harm than good. As patients, here are 5 things we would like you to remember before you diagnosis us.

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To the Doctor(s) that Misdiagnosed Me:

In my 30 plus years on this planet, I’ve been the unfortunate witness to the wide spectrum of care that exists in the medical field. As a cancer survivor, and after personally dealing with several chronic medical conditions myself, as well as both my daughter’s and husband’s serious medical conditions (heart surgery and brain surgery), both which required almost immediate life-saving surgical intervention upon diagnosis, there are 5 important things that I would like you to keep in mind when diagnosing a patient or a member of their family with a potentially life-threatening illness.

1.    We are beyond scared. Please be patient and kind. We may be just another patient on your schedule or a last-minute appointment that got added to your day, but please keep in mind patients often seek out the best medical experts when we are in life or death situations. We are scared for our lives. We want reassurance and false hope if necessary, to get us through this difficult time. Please remember to see us as fellow humans first. Patients second. 

2.    We are more informed patients thanks to Google and other online resources. Thanks to technology, I now walk around with 24/7 to my complete medical history for the last 4 years of my life. I have access to every blood test, scan and test result you can think of. I also have access to medical research articles and you’d be surprised by the valuable medical information you can get from Facebook and other online support groups filled with other’s going through similar health struggles. Please respect my ability to research my medical condition and listen with an open mind to my concerns regarding my health.

3.    By the time we are coming to see you, we have likely consulted with numerous other doctors and specialists. As moms and wives, we are often the ones in the family who are often on the frontlines of our families’ medical struggles. We manage the appointments and research the best doctors and specialists we feel can best help us. Please see as us more than as an unnecessarily worried, anxious, stressed ‒or worse a hypochondriac, a person who has an irrational underlying fear or belief of having a serious disease without medical evidence to back up their symptoms. Sometimes fears are valid. Sometimes it is CANCER or the worst possible scenario so all options should be explored until a valid theory is reached.  Sometimes symptoms can’t be explained with routine tests.  Please take the time and have the patience to get to the root cause of my issues, rather than simply prescribing me a prescription and calling it a day or dismissing my concerns as simply “in my head” and that “I’m simply stressed or depressed” and should seek out some ways to reduce my stress levels.

4. “Statistical improbabilities” exist. I’m one of them. As a cancer survivor, I’m a walking medical statistic and so is my daughter and my husband. No matter how outrageous my claim or statistically unlikely based on your initial assessment, realize that the human body is a mysterious and complicated machine and although you are extremely well-educated and highly trained, even the best doctors overlook symptoms and miss diagnoses. Please dig deeper and don’t settle for the first, easiest explanation you come across. If something doesn’t make sense, please continue to investigate.

5.    I’m trusting you with my life or the life of my loved one.  As humans, most of us are on the cusp of life and death all our lives and may never realize it. But as a mom to a child born with a congenital heart defect, a husband who had a serious brain malformation and now as a cancer survivor myself, I understand first-hand how fragile life can be. However, I also believe in miracles and the incredible power of people like you to help fix our broken bodies and uplift our spirits by giving us the power to have hope even in our worst times. Hearing you or someone you love has a life-threatening diagnosis is almost indescribable. But as a patient, what matters MOST are the words that come next. I’ll never forget hearing the words from my Ear, Nose and Throat Specialist on November 27, 2017:

You have Hodgkin Lymphoma. This is a type of cancer that starts in your white blood cells which are part of your immune system. However, this is extremely treatable cancer. Even curable in a lot of instances.

When I first met with my oncologist who specializes in my type of lymphoma cancer. One of the first things she did after explaining my diagnosis, was to compassionately look me in the eyes, hold my hand and tell me, “My job as your doctor (and a mother myself) is to cure you.” I believe her conviction at that moment was instrumental in helping me have the courage to go through with pretty aggressive 9 months of cancer treatment. And thankfully I did because I’m now in remission, largely to my doctor’s clinical trial and the trust we established during my initial consultation. Please remember that you are giving more than a diagnosis. You are sometimes giving a life-changing label, one that once spoken out loud by an esteemed medical professional can be quite unforgettable and even damaging‒ whether or not it is correct. Please also be careful with how you explain our diagnosis. As a patient and the mother of a patient, I want the good, bad and ugly. I want to be prepared by educating myself on all possible outcomes so I know what to expect. And remember, if you don’t tell me, I’ll probably just look it up on online anyway.

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The Hippocratic Oath:

I swear by Apollo the physician, and Asclepius, and Hygieia and Panacea and all the gods and goddesses as my witnesses, that, according to my ability and judgement, I will keep this Oath and this contract:

To hold him who taught me this art equally dear to me as my parents, to be a partner in life with him, and to fulfill his needs when required; to look upon his offspring as equals to my own siblings, and to teach them this art, if they shall wish to learn it, without fee or contract; and that by the set rules, lectures, and every other mode of instruction, I will impart a knowledge of the art to my own sons, and those of my teachers, and to students bound by this contract and having sworn this Oath to the law of medicine, but to no others.

I will use those dietary regimens which will benefit my patients according to my greatest ability and judgement, and I will do no harm or injustice to them.

I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

In purity and according to divine law will I carry out my life and my art.

I will not use the knife, even upon those suffering from stones, but I will leave this to those who are trained in this craft.

Into whatever homes I go, I will enter them for the benefit of the sick, avoiding any voluntary act of impropriety or corruption, including the seduction of women or men, whether they are free men or slaves.

Whatever I see or hear in the lives of my patients, whether in connection with my professional practice or not, which ought not to be spoken of outside, I will keep secret, as considering all such things to be private.

So long as I maintain this Oath faithfully and without corruption, may it be granted to me to partake of life fully and the practice of my art, gaining the respect of all men for all time. However, should I transgress this Oath and violate it, may the opposite be my fate.

Translated by Michael North, National Library of Medicine, 2002.

Sources:

The Hippocratic Oath

https://www.nlm.nih.gov/hmd/greek/greek_oath.html

Myth or Fact: Is "First Do No Harm" Part of the Hippocratic Oath?

https://www.thoughtco.com/first-do-no-harm-hippocratic-oath-118780

Hair Today. Gone Tomorrow.

My hair loss journey from Stage 3 Classical Hodgkin Lymphoma, a type of cancer that starts in white blood cells.

My hair loss journey from Stage 3 Classical Hodgkin Lymphoma. Diagnosed in November, 2017. Currently 9 months in remission and counting thanks to immunotherapy and AVD chemo. Learn more about my treatment here.

My last chemo was August 9, 2018. I was notified I was officially  in remission on May 1, 2018 prior to completing my full 6 cycles of chemotherapy.

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One of the most difficult parts of the cancer journey is watching your appearance or the appearance of someone you love drastically change before your eyes. Watching my reflection slowly change was one of the most painful parts of my cancer journey, particularly losing my hair, because once my hair began to go, everything became SO REAL.

When clumps of my hair started to fall in the shower, I watched in horror as the amount slowly gathered by the drain. All my life, I have been blessed with thick, beautiful, healthy hair. I never in my life did I ever think I would ever have to worry about losing it… but there it was slowing going right before my eyes. 

Where at one time my hair was so thick, I could snap a rubber band just with the sheer weight of my ponytail, now there was nothing I could do to stop the growing patches of my scalp that were beginning to show.  I tried makeup to cover my growing roots from my last color months before my diagnosis. After all, I was going to lose my hair, what was the point of a touch up now?  My hair was becoming a mess but it was the least of my worries. I knew in my heart holding onto it was a losing battle.

“Mommy, are you gonna lose all your hair?”

As a woman and a mom of three young children, losing my hair was one of the most gut-wrenching things I have had ever tried to explain to my children, particularly my youngest twins who were 3 at the time.

Once you find you or your loved one has cancer your thoughts immediately go to hair loss. Pictures of chemo patients you have seen in movies and on TV float through your mind. I know because it went through mine.

You start to search for all the remedies to counteract hair loss: Castor oil. Cold Caps. Extra biotin supplements. You cling to stories where others went through chemo and were fortunate to go through treatment and not lose all their hair.

I thought preparation of some sort was definitely a necessity. Once my diagnosis was confirmed, I got a couple books for my children to read to help them understand what our life was going to be like and most importantly what mommy was going to maybe look like for the next few months. One of the best books I got for my young twins was “Nowhere Hair” by Sue Glader which offers a  wonderful way to explain hair loss to young children.

As much as I knew I could deal with my changing appearance by wearing hats and wigs, I knew mommy’s changing looks could be scary for my children so I wanted to be compassionate and considerate of their feelings too. I thought it would be best to let nature take its course and not try to do too much to prevent my hair loss. I decided I would shave my head if it became absolutely necessary, but I was hopeful that my thick hair would be able to weather the trauma of treatment.

Before I began treatment I had shoulder length thick wavy hair. Before I began my immunotherapy treatment I decided to cut it as short as possible, while still being able to pull it back into a ponytail.

During my three infusions of Keytruda prior to chemotherapy, I was fortunate not to experience any hair loss. The only hair loss I can attribute before I began chemo was likely an effect from all my scans prior to being diagnosed and then during the staging process. 

The Hair Loss Begins

Most hair loss for patients having the AVD or ABVD chemo regimen like I had for my Stage 3 Classical Hodgkin’s lymphoma significantly increases by the 4th chemo treatment.  I definitely noticed my hair loss picking up at that point. Many other lymphoma cancer survivors report hair loss starts after the second chemo treatment. I’ve also heard of people would did not lose all of their hair even with several cycles of chemotherapy.  Other patients with RCHOP chemotherapy report different patterns of hair loss. Some people just reported extreme thinning. I believe I would classify as extreme thinning because I never ended up shaving my head during treatment. Once it got bad I started wearing wigs and had fun experimenting with different hairstyles.

The worst of my hair loss from stage 3 Hodgkin Lymphoma. This is the aftermath of 3 cycles of Keytruda immunotherapy plus 6 cycles of AVD chemo. 6 cycles = 12 individual chemo treatments.

A look at some of my different wigs.

Making the Most of My Hair Loss

Through the first part of my chemo, I made the most of my hair loss by wearing slouchy beanies and winter caps because my chemo treatment started in February in Chicago. However by midway through my treatment around May I knew I was going to need to consider starting to wear a wig.

The changing weather made wearing hats uncomfortable. I decided to look into my insurance benefits to see if they reimburse for a wig and surprisingly a wig was a covered benefit.

It’s important that hair loss in chemo takes many forms than just the hair on your head. It means hair anywhere is up for grabs. Leg hair. Eyebrow hair. Nose hair.  Even those pesky other hairs women get. Which meant less shaving for once in my life. Sweet victory!

After having long, thick hair all my life one of the greatest blessings is now how must faster I can get ready. And how much money I can save on hair styling products because now I can share them with my husband.  Always a silver lining.

Going through cancer has taught me time and again that even our most difficult seasons can bring many blessings if we know where to look. Sometimes, when we hardly recognize the face staring back in the mirror, that’s okay. It’s okay when that happens because I believe it means we’re in the midst of transforming into something better.

Losing my hair has helped me gain a new level of self-confidence. Never in my life did I ever think I would proudly rock this short of hair. I thought for sure I’d stay in my wig for months. But, as of right now, I’m also enjoying rocking a lot of hats too.

Hair loss is a journey for everyone, regardless if you are the patient yourself. It’s important to do what you feel is best, when you feel it is best. I learned there is no magic time table. But thankfully, I also learned hair grows back pretty quickly.

 Hair Loss Resources for Cancer Patients

Real-hair wigs can cost thousands of dollars and are often only partially covered by health insurance, but there are ways to get wigs for FREE:

• American Cancer Society: To support cancer patients undergoing chemo, the American Cancer Society offers brand new FREE wigs at wig banks and cancer centers around the country. Click Here and go to the “About Us” tab for resources in your area. Or call 800-227-2345.

• Cuts Against Cancer: This nonprofit organization and foundation is dedicated to creating and donating free Medical Wigs for women and children who cannot afford to purchase a Real Human Hair Medical Prosthesis. For a FREEwig for anybody facing hair loss from any type of cancer living anywhere in the world, Click Here.

• Friends are by Your Side: Celebrity hairstylist Martino Cartier founded this charity to help cancer patients get FREE wigs through a network of hundreds of salons across the US, Canada, Mexico, England and Australia. Click Here to see whether there is a salon in your area.

• Lolly’s Locks works with wig providers across the country to connect cancer patients in need with high-quality wigs. Created in honor of Lolly Toll, who lost her life to cancer in 2012. Lolly understood the relationship between looking good and feeling good, and it was her wish to help those who could not otherwise afford a stylized wig. Click Here

• EBeauty Community Inc.: Provides FREE wigs for cancer patients undergoing chemotherapy treatments. They also have a national wig exchange program through which you can donate wigs you no longer need to others who do. To request a wig or donate one, Click Here

• HairToStay: This nonprofit offers need-based grants to offset the expense of scalp cooling systems for breast cancer patients in the US to minimize hair loss during chemotherapy. To learn more, Click Here

Good to Know

• It takes at least six ponytails to make one wig. If your friends and family have hair to spare and want to help the cause, tell them about the Pantene Beautiful Lengths campaign that collects healthy hair to make FREE wigs available to cancer patients at the American Cancer Society’s wig banks. Donated hair must be a minimum of 8 inches long (measured from just above the elastic band of a ponytail to the ends). Click Here, or call 800-945-7768, for more details and where to donate.

Source:  https://breastcancerfreebies.com/wigs/

Books to help children understand hair loss from chemo:

“Nowhere Hair” by Sue Glader

Amazon link: https://www.amazon.com/Nowhere-Hair-Explains-Cancer-Chemo/dp/0984359168/ref=sr_1_1?ie=UTF8&qid=1549460550&sr=8-1&keywords=nowhere+hair

“Our Mom is Getting Better” by Alex Silver

Amazon link: https://www.amazon.com/Our-Getting-Better-Alex-Silver/dp/0944235859/ref=sr_1_1?ie=UTF8&qid=1549460629&sr=8-1&keywords=Our+mom+is+getting+better

The Audacity to Choose Hope

In my posts I talk a lot about hope. It is undoubtedly my favorite four letter word after love. I believe both those four letter words hold tremendous power.  I believe all great things are possible through them.

 I’ll be the first to admit, I wasn’t always able to find hope. I’ve struggled with severe depression, anxiety—even been so hopeless I’ve wrestled with thoughts of suicide.

For years, it was like I was stuck under disabling clouds of fear. Fear of failure. Fear of the unknown. Upset with where my life was, but afraid of changing it. But then, hope stepped in.

At first it was a quiet voice in the back of my head. I could barely make out what it was saying over the noise of my worst fears.

But little by little…

As I learned to silence my fears and anxiety through meditation and mindfulness, I learned to trust the voice that said, “I’ll try again tomorrow.”

And little by little, I started to change.

Little by little…

I started to let go of the belief that I was not good enough. That I would probably fail, so it was better not to try.

Then one day I felt a shift. I could see the sky again, bright with hope and the possibility of change.

By listening to the voice of hope, I started to believe that I could be better. I started to believe that things would get better.

And you know what? They did.

I think it all comes down to faith, hope and belief. You have to have faith in something more than yourself. You have to believe that there is more to life that what you are going through. Believe that these things aren’t happening to you; rather, they are happening for you.

Those struggles. This difficult season. Perhaps this fire wasn’t sent to destroy you, it was meant to forge you into a stronger, more resilient version of yourself. But you have to be brave enough to hold on to the hope that life will be beautiful again.

Because I believe hope is faith in action. When life gives you every reason to question and doubt the reason behind your struggles and if you will be able to overcome, hope swoops in to provide possibilities—even when things seem impossible.

Hope refuses to give up—no matter the magnitude of the obstacle. Hope is stubbornly, unapologetically optimistic against all odds.

Hope is also a choice. It is reaching for the glimmer of goodness when you are drowning in a sea of awfulness.  Because I’ve learned that once you reach for hope, it starts to multiply—spreading and uplifting those around you.

Having the audacity to choose hope when most would fall into fear is incredibly powerful. Because once you choose to focus on the good that could come it instead of agonizing over the what-could-bes, you will start to change the way you think. You will start to recognize and appreciate your own strength. And once you recognize your own strength, you can use the scars from your struggles as signs of hope for others. 

“Hope is not pretending that troubles don’t exist. It is the hope that they won’t last forever. That hurts will be healed and difficulties will be overcome. That we will be led out of the darkness and into the sunshine.”

Time

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As a wife and mom of three, I can definitely say there is truth in the saying, “the days are long but the years are short.” The years seem to be flying by at an incredible speed, yet sometimes it feels like the days are crawling by at a snail’s pace. Sure, it feels like I blinked and my babies are now 4 and my oldest, now 11, is heading to middle school in the fall.

Admittedly, this is a year I hoped would fly by. Since I was diagnosed with cancer in November of 2017, I wished so bad I had that nifty remote from the movie Click with Adam Sandler where I could fast-forward through all of the pain and uncertainty of this year. 

But as much as I would have loved to run and hide from it, I knew in my heart I had to face it head-on. There was no mistaking, this was going to be incredibly difficult on all of us, but the only way to beat it was to go through it—together.

Now, instead of counting down the days until our next family trip, we’re counting down the days until my last chemotherapy treatment. Now, every other Thursday, I’m counting down the minutes as my chemotherapy slowly infuses into my veins. Instead of focusing on my summer tan, I’m trying to regrow my hair. It’s a new twist and I’m trying my best to accept my current state—bald and all.

This is our life now.

These are the days in the trenches. It’s week after week of doctor appointments, labs, tests and trips to the ER. It’s been nearly 8 months since my initial diagnosis, and I’ve come to realize chemotherapy isn’t like it’s shown on TV and the movies. It’s a slow process filled with a lot of ups and downs.

But I’ve been surprised to find that I have been feeling better during the course of my treatment. Sure, I still have good days and bad days, but there is a predictable pattern to my symptoms, and with just three treatments to go, the end is in sight and the light at the end is getting brighter by the day.

All of this had me thinking about the nature of time, and how it often feels so relative to our surroundings. For instance, we all have had those times where it seemed time seems to warp around whatever we are experiencing, both good and bad.

Like the feeling of time standing still when we are with our partner, or how hours can fly by in mere moments when you’re talking to a dear friend or someone you love. Then there are the times, when the hours seem to drag: when you’re waiting for your last class or work to end, standing or sitting anywhere and waiting for longer than 15 minutes.

But that is the paradox of time. We boldly treat it as a commodity we have plenty of. If we aren’t always mindful of how or where we spend our time; we tend to waste it.

I know I sure was guilty of it and still probably am.

Like most women, I would often tell myself, I will be happy when “X” happens. I would often tell myself I’d finally be happy and able to relax when I lost the 10 pounds, got the job or when my kids are more independent.

It wasn’t until I discovered my time was in jeopardy of running out, that I began to truly appreciate what a gift each day is. Because cancer insists on its own time.

To me, cancer is analog in a digital world. Each phase of the disease — diagnosis, surgery,  chemotherapy and other treatment — carries its own distinct sense of stepping outside traditional time, and its own sense of separation from the world around you.

However, one of the blessings of cancer, is that it cements you to the present moment. All I have is NOW. I can no longer get to hung up in future events or beat myself up over past transgressions. In many ways, the certainty in which I use to naively eye the future is gone.

When you’re diagnosed with a serious illness like cancer, it makes sense to wonder how many birthdays, holidays and events you will be able to witness.  Because when your days start to feel numbered, it’s only natural to start counting them.

But I’ve learned that when we become too preoccupied with counting our days, we forget to fill each one with things that matter. Sure, now that I’m in remission, we have new milestones and anniversaries to celebrate. I hope I am fortunate to count my remission by the number of years that have passed. But for now, I am thankful for today and I’m focused on making the most it because the way I see it:

Now is the time.

Now is the time for more hugs and fewer words left unsaid. For more belly laughs and less tears. For extra late-night cuddles and butterfly kisses. For letting the dishes and the laundry wait while we make more family memories.

I’ve come to realize and appreciate that there is a reason God numbers our days.
It’s to make them precious. NOW is the time to appreciate all we have because NOW is all we truly ever have. And the only thing more precious than our time is who we spend it on.

Facing My Fears

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Too often, we allow fear, worry, and doubt to creep in and control our lives. We allow them to steal our joy, our sleep, and even our dreams. It is said underneath your fears lie great opportunities. As scary as having cancer is, it is giving me the opportunity to face some of my greatest fears.  

As long as I can remember, I’ve had a severe phobia of needles. Pretty much every time I get a blood draw, IV or shot I pass out. I can’t even watch injections on TV, let alone being done on someone I love. One time I even passed out and fell off the examination table after getting a shot and started convulsing. Scary stuff.

When I was younger, I dreamed of going into the medical field. I initially wanted to be a nurse but my fear of needles kept me from pursuing my dream. In college, I briefly majored in Occupational Therapy but later changed majors after my oldest daughter Ava was born. One time when I was in college, my volleyball coach had us pick out an inspirational quote that would become a mantra. I picked the following quote:

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

— Eleanor Roosevelt

Later that year, I became pregnant with my daughter. I was scared beyond belief about becoming a mom at 20. But I knew what I had to do. I taped that quote on my dashboard and promised to do everything I could to honor the new life growing inside me and bring my daughter into this world healthy. In facing my fear of becoming a young single mom, I gained the best gift imaginable: my beautiful, smart and kind-hearted daughter Ava. 

Although I chose not to pursue a medical career, I feel like it keeps coming back into my life.  After my oldest daughter, Ava was born with a severe heart defect that required surgery, and my husband had his brain surgery, I again felt called to pursue a medical career. As I wrote in an earlier blog post, "Connecting the Dots", being there to support my daughter and husband through their health crises prepared me to face my own health battle. Once I’m in remission and my twins are in school full-time, my dream is to get certified in medical writing and editing. It’s part of the reason I started this blog. 

Now it seems everything in my life has come full circle. I am continually surprising myself at how much I can endure and how many fears I’ve faced in the last few months. Since my ordeal began: I’ve had surgery, an unsedated bone marrow biopsy and a port surgically inserted under light sedation in my chest for my treatment. I’ve had more IVs and shots than I could ever count.

I know I have a long road ahead but sometimes you need to pause and appreciate how far you’ve come. And I’ve come a long way. We all have fears. Being afraid of something is a natural part of life, but it's important to overcome your fears. If you let fear control your life, then you won't be living life to its fullest. By facing my fears head on, I not only am confronting what is making me so afraid, I'm also taking back control.

So what has helped me face my greatest fears?

Awareness

Before you can begin overcoming fear, you have to be aware that your fears are causing difficulty or creating chaos in your life. It’s easy to get so attached to your thoughts and feelings that you think they are all that exist, which simply is not the case. You are not your fears. You are the awareness that experiences it.

Being Vulnerable

Brene Brown, a researcher from the University of Houston Graduate School of Social Work and author of Daring Greatly, found that the belief in our own unworthiness causes us to live fear-based lives. We are afraid of letting people see who we really are and potentially exposing ourselves, so we avoid the one thing that can make us more courageous: vulnerability. Courage and vulnerability are closely aligned, says Brown, and the two qualities can greatly improve our lives. According to Brown, to conquer our fear we must “dare greatly,” or go out there and expose ourselves to failure and criticism.

Changing My Mindset

Learning to deal with fear is all about putting your negative thoughts in perspective. We tend to focus too much on the negative, so by looking at all the options, you often realize that you’re making a big deal of nothing. There are so many things that can happen that it’s impossible for you to predict. In order to help myself have a positive mindset in treating my cancer, I tell myself every day that "every discomfort I’m facing is temporary and getting me one step closer to being cancer free."

Thinking Positive

Whenever fear strikes, turn it around in your head. Instead of thinking of something bad that can happen, think of something positive. What’s a positive outcome to your fear? In my case, my fear led me to seek medical treatment and may have undoubtedly saved my life.

Gratitude

Whenever you feel fear, switch your focus to what you are grateful for instead.  While I still have a strong fear of needles, I have shifted my focus to be thankful I am able to receive treatment that can save my life. All of the injections, infusions and IVs are necessary to get me well again. I'm also thankful for the many skilled doctors, nurses and technicians that are caring for me.

Exposing Myself to My Fears

When it comes to fear, the only way out is through. One of the most effective ways to overcome fear is to repeatedly force yourself to face what you’re afraid of. Research has found that this repeated exposure lowers the psychological fear response until it is more manageable or in some cases gone altogether. In order to combat my fear of the unknown about my treatment, I was able to lessen my fear by reading articles about what to expect with my surgery and other procedures like my bone marrow biopsy. I also reached out to others that have gone through similar experiences to help get a better idea of what to expect.

Although the role of fear is to keep us safe, we do ourselves no good by living in fear. To reach our full potential and draw in greater opportunities we must eliminate fear from our lives through daily efforts that promote our strength and well-being. Your fear may never be fully extinguished, but hopefully it will hold less power over you and not prevent you from achieving important goals and enjoying your life. In the words of Mark Twain, “Courage is not the absence of fear. It is acting in spite of it.”

So what fears have been holding you back?  What’s one fear you need to face sooner rather than later? 

Leave a comment below and share your thoughts.

Sources:

Huffington Post

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