Remission

Life After Cancer: Finding Meaning & Purpose

Photo by Patrick Fore

Photo by Patrick Fore

Now what?

Now that my scars have healed and my hair has grown back, what’s next?

Fighting cancer challenges your body, mind and spirit.

When treatment ends, we often find ourselves picking up the pieces of our lives we put on hold or were too exhausted to manage on top of staying alive.

Adjusting to life post-treatment can be just as challenging for our battle-weary bodies and minds.

One of the hardest parts about remission is learning how to bridge the great divide from patient to survivor.

After my treatment ended, all the emotions and fears I had been suppressing to get to remission seemed to boil over when there was finally space to process everything my body endured.

I wondered, how will I ever trust my body again?

I struggled to remain positive with all the ongoing uncertainty.

Soon the anger, depression, frustration and fear became so loud it was impossible to ignore.

I had to dig deeper into these shadowy aspects of myself and get to the root of these feelings to truly heal.

Now that the cancer left my body, it was time to focus on healing the invisible wounds the cancer left behind.

Therapy was incredibly helpful, but I was still struggling to find a constructive outlet.

I was feeling stuck.

I read several books that provided incredible insights, but something was still missing.

It wasn’t until I joined a support community and started journaling that something finally clicked.

Putting pen to paper helped me make sense of all the chatter in my mind.

Connecting with others in the community on a similar journey helped me identify my limiting beliefs and learn more about the trauma that has kept me stuck.

Instead of fearing what may come next, I’m learning to take back control by doing what I can to stay healthy and surrendering to the fact that the rest is simply in God’s hands.

It’s still a daily struggle, but I refuse to let my future be dictated by the fear of relapse or a new disease.  

Although we aren’t always able to control what happens to us, we can change the way we THINK about the negative events that happened to us.

And that is how we connect with our POWER and our PURPOSE.

I may not always view cancer as a gift, but it certainly has been a catalyst in my life, pushing me to make many necessary changes, from my health and fitness to my finances.  

Cancer will always be part of my story, but I refuse to let it be the whole story.

I get to decide how the rest plays out from here.

And as terrifying as that can be to embrace fully being alive, I’m so thankful I’m still here to watch how the rest of my story unfolds.

Treatment Update

I recently saw my oncologist for a six-month check-up.

It was the longest I went in-between visits since being diagnosed.

Now that I’m over three years in remission, I don’t need to be seen as often.

I still get nervous before every visit, but thankfully my exam and all my counts checked out, so there are no concerns at this time.

I also learned the results for the clinical trial I participated in at Northwestern were recently published. To date, I and all the other patients in the clinical trial continue to show no evidence of disease.

As difficult as treatment was, knowing that I was able to help advance cancer care by taking part in a clinical trial has helped me find purpose and meaning within the pain.

My oncologist continues to reassure me now that I have passed over two years in remission, my risk for relapse is about the same as the general population.

However, due to the risk of secondary cancers, cancer survivors under 40 are urged to get yearly skin cancer screenings because of radiation exposure during treatment and scans.

I had been putting off visiting the dermatologist, but I had a couple of moles that appeared to be changing after treatment, so I decided it was best to get a consult. Fortunately, the dermatologist had no concerns either at this time, so I am feeling very relieved.

Thank you for your ongoing support. As hard as it can be navigating the uncertainty that comes with cancer treatment and remission, I’m so grateful I don’t have to travel this journey alone.


Join the Hope Warrior Community

Please check out the following resources if you’ve also been feeling stuck, disconnected, or would like some additional encouragement. I’ve found this program and support community incredibly helpful throughout my journey.  

Hope Warrior Academy

A 5-week virtual program, helping you focus on one key area and get to the root of why you’re stuck.   

Learn More

Support Community: Encouragement During Uncertain Times

This is a community of hope warriors who love reminding you of your worth and power to make positive change. In uncertainty, words of encouragement can make all the difference! This page is free to join and strictly for sharing hope, encouragement, and positivity.

Join Group

Worrier and Warrior: Between Grief and Gratitude

Photo credit: Antonio Jeneski

Photo credit: Antonio Jeneski

Some days I'm more of a worrier than a warrior.

Some days, hard as I try, I can't shake the heavy feeling of dread running through my body.

Most days, I find myself walking a thin line between grief and gratitude.

Don't get me wrong. I'm so incredibly thankful to still be here.

I do my best to praise God every day for the breath that fills my lungs. But no matter how much gratitude fills my heart, there is still a giant piece of me grieving how life used to be.

I'm grateful to be a cancer survivor, and in a few months, I am hoping to celebrate three years in remission.

And the longer I'm in remission, the more distant my treatment becomes.  

I remember right after I was diagnosed, a recent breast cancer survivor told me, "one day you will wake up, and cancer won't be the first thing on your mind."

That thought stuck with me through treatment and into remission. I continue to keep this in mind as a quiet gauge of my progress and recovery.

When you face a traumatic event like cancer, I've learned you often can't fully process or grasp what happened until long after the event has ended. I personally didn't start fully processing my cancer journey until my first year in remission.

After nearly a year of immunotherapy and cancer treatment, once my body was out of survival mode, it was time to heal. But how and where to begin?

I soon discovered the trauma of fighting cancer lasts long after treatment ends.

Still, three years after finishing treatment, the smell of rubbing alcohol is sometimes all it takes to put my body back in fight or flight mode. Any unusual aches or symptoms, and my mind immediately starts to panic.

 Is the cancer back? Is this a possible side effect from treatment?

Emotionally, I have been struggling with increased anxiety, anger and PTSD. Weekly therapy sessions have been helping me learn new strategies and techniques for coping with such intense emotions.

Online cancer support groups have been a tremendous resource, helping me connect with other fighters and survivors who genuinely understand my ongoing fears and concerns.

Thankfully, since having my port removed in August, my treatment has started to feel more and more like a distant memory. 

Some days, cancer is the furthest thing from my mind. 

Other days, when I'm jolted awake by a painful leg spasm, I'm reminded just how much my body has endured and that my journey is far from over. 

Since my treatment ended, I've been struggling with a variety of cardiovascular and neurological issues. Cancer drugs cause various long-term health effects, from brain and vision changes, heart and lung damage, to increased risk of secondary cancers and fertility issues. 

I've been struggling with neuromuscular and mobility issues the most. Getting diagnosed with dysautonomia and POTs helped explain some of my more concerning cardiac symptoms after treatment, but painful neuropathy in my arms and hands and chronic leg spasms have been debilitating at times. 

Physical therapy, medications, and supplements have helped provide a little relief, but I've come to accept some of these issues may be permanent, lasting effects of my treatment. 

At the end of 2020, my neurologist was concerned that my newly diagnosed dystonia and persistent neuromuscular and mobility issues could be a sign of early-onset Parkinson's disease. In December, I had a DAT scan of my brain that thankfully did not show evidence of Parkinson's. 

My first Botox treatment helped ease my chronic headaches and loss of mobility in my neck. However, the persistent issues I've been having with my legs require additional testing. Lower limb spasms are a common sign of Parkinson's but also common after cancer treatment.  

I have an EMG, a nerve conduction test this week to determine what exactly may be causing my frequent leg spasms. My next big scan to ensure I'm still in remission is coming up at the end of March. 

As I continue to move forward further into remission and recovery, I am learning:

 God draws straight with crooked lines.

Although I may not be where I wanted or hoped to be by now, I'm not where I used to be, either.  

Courage often sprouts in the depths of sorrow, and from painful beginnings come stronger roots.

 Without the darkness, we wouldn't see the light,

 Without sadness, we wouldn't know happiness.

 Without pain, we wouldn't find relief.

 Worrier and warrior—I can be both and still be hopeful. 

 

If you are looking for some additional support during these trying times, I highly recommend checking out these communities and groups: 

Cancer Blogs & Support Communities

I Had Cancer

Stupid Cancer 

Cancer Patient/ Survivor Facebook Support Community 

Taking Back Your Life After Cancer

General Support & Encouragement Facebook Group 

Encouragement During Uncertain Times 

Check out the podcast I recently recorded with the Hope Warrior Project to learn more about my journey and how online support communities have helped me cope with cancer and more.

Melanie Mogensen is a writer, wife, and mother of three who knows all too well how life can change in an instant. In late 2017, Melanie was diagnosed with St...

Lucky and Blessed To Be Cancer-Free

My latest CT scan on 3/16/2020 showed I am still cancer-free. I will be celebrating two years in remission on May 1st, 2020.

My latest CT scan on 3/16/2020 showed I am still cancer-free. I will be celebrating two years in remission on May 1st, 2020.

So happy to share the news…

My latest scan showed I am still cancer-free!

As luck would have it, I received a message from my oncologist on St. Patrick’s Day letting me know my scans looked great overall.

I had some questions on my results so I wanted to wait to share the news until I spoke with my doctor.

I was supposed to see my doctor today to go over the results, but Northwestern has decided to make all non-essential visits phone appointments during this time.

 My doctor confirmed my bloodwork looked great and I was so relieved to find out that my lungs are now completely clear after my earlier bouts with pneumonia this year.

 I still have a small nodule on my lung, but that has remained unchanged since 2017 so they are thinking it is most likely scar tissue from a past infection.

My latest scan noted an enlarged lymph node in my stomach; however, it has gone down in size since my last scan, so my doctor is not concerned.

 The best news is since this scan is clear, I will be celebrating 2 years in remission on May 1st!

Getting to the two-year mark is a crucial milestone because now my chances of relapse are about the same as the general population.

I will continue to have blood draws and follow up visits every 6 months, but NO MORE SCANS are needed unless my bloodwork or symptoms suggest further testing is necessary.

I will also be able to have surgery to have my port removed before the year is over.   

I am incredibly lucky and blessed to still be cancer-free.

still cancer free family.jpg

We had plans to celebrate spring break and our 8th wedding anniversary in Phoenix and Sedona.

However, with everything going on we decided to postpone our trip.

As much as I would have loved to get away to celebrate, the news I am still cancer-free is all I needed to relax.

I am holding my fellow cancer fighters in my prayers because they are facing incredibly uncertain times right now.

Many are struggling with canceled surgeries and delayed treatments due to being at increased risk of infection.

Please keep all cancer fighters and survivors in your thoughts and prayers during these challenging times.

Thank you for your prayers and continued support!  



A World Without Cancer is Possible

waiting room.jpg

Your time is up.

You hear your name being called.

Your number’s up.

You’re next.

How did you get here?

This is a mistake.

This HAS to be a mistake.

It can’t be real.

Cancer?

Three words you never thought you’d NEVER hear attached to YOUR name.

But here you sit in the oncologist’s office waiting to learn your fate.

What treatment you should take.

The possible side-effects.

Calculating your odds of survival.

How did this happen?

Why?

It is said that cancer doesn’t have a face until it’s yours or someone you love.

You never think it’s going to be you or your loved one until it unfortunately is.

Cancer knows no borders.

It does not care if you have money to pay for treatment.

It does not care if you were just married.

It could care less that you are pregnant or just had a baby.

It does not matter that you are mother or a father.

It does not care that you are only a child.

Cancer is unfair, untimely, and a great uncertainty we all must face.

2 years ago I was diagnosed with Stage 3 Hodgkin’s Lymphoma two weeks before Christmas.

I was fortunate to be able to take part in a clinical trial at Northwestern where I had access to one of the latest cancer treatments: immunotherapy.

To my surprise, just 6 months after a stage 3 cancer diagnosis, I was in remission and I STILL AM today thanks largely to the advanced immunotherapy/chemotherapy treatment I received at Northwestern’s Lurie Cancer Center.

I believe in a world without cancer.

Do you?

February 4th, 2020 marks the 20th anniversary of #WorldCancerDay. Let us help raise awareness so that we can help transform cancer from deadly and treatable to entirely preventable.

Human colorectal cancer cells treated with a specialized drug combination under study for a cancer therapy. Cell nuclei are stained blue; the chromosomal protein histone gamma-H2AX marks DNA damage in red and foci of DNA replication in green.Created…

Human colorectal cancer cells treated with a specialized drug combination under study for a cancer therapy. Cell nuclei are stained blue; the chromosomal protein histone gamma-H2AX marks DNA damage in red and foci of DNA replication in green.

Created by Yves Pommier, Rozenn Josse, 2014

Source: National Cancer Institute @NCI

Click here to learn more about my treatment and the clinical trial I took part in at Northwestern’s Lurie Cancer Center.

Visit the American Cancer Society to learn more about immunotherapy treatment options.

#IAmAndIWill #cancersurvivor #worldcancerday #lymphoma

 

 

 

 

Overcoming the Trauma of Having Cancer

“My past is an armor I cannot take off, no matter how many times you tell me the war is over.”

“My past is an armor I cannot take off, no matter how many times you tell me the war is over.”

Tomorrow I will walk through the doors of the Lurie Cancer Center as I have many times before. This routine has become all too familiar. Over nine months of treatment mixed with numerous other visits and hospitalizations allows me to walk the halls of Northwestern with ease and eerie familiarity.

It starts with a visit to port draw to get my blood drawn. This is hands down one the hardest part of the visit for me. Hours before my appointment I begin preparing for this by applying a numbing cream to my chest port—a small device surgically implanted into my chest that helps deliver medication and make for easier blood draws during treatment.

For many cancer patients, our port devices stay in long after our cancer treatment—sometimes for years because of the risk for potential relapse.  Until then, it requires routine flushes by a medical professional. While showering or getting dressed, this protruding bump in my chest is a constant reminder of my treatment and the fact that my journey is far from over.

Next, I will wait to see my oncologist and get the results of my latest blood work. I will hold my breath as she palpates the lymph nodes in my neck, chest and lower body. I pray that I hear the words, “Everything looks good. See you in a few months.” Yet I also try to mentally prepare myself for the potential ‘what ifs’. Will I need another repeat scan? What if my blood work is off?

Many people believe that going into “remission” means victory—that one has defeated their disease and they have moved on to recovery. Surely, remission marks a major turn in cancer care, but it is more complicated than simply being done with cancer treatment.

The following is a vivid glimpse into the reality of being a cancer survivor.


Imagine you're going about your day, minding your own business, when someone sneaks up behind you...

You feel something press up against the back of your head, as someone whispers in your ear.

"Sssshhhhh.... don't turn around. Just listen. I am holding a gun against the back of your head. I'm going to keep it there. I'm going to follow you around like this every day, for the rest of your life."

"I'm going to press a bit harder, every so often, just to remind you I'm here, but you need to try your best to ignore me, to move on with your life. Act like I'm not here, but don't you ever forget... one day I may just pull the trigger... or maybe I won't. Isn't this going to be a fun game?"

This is what it is like to be diagnosed with cancer. Any STAGE of cancer. Any KIND of cancer. Remission does not change the constant fear. It never truly goes away. It's always in the back of your mind.

Please, if you have a loved one who has ever been diagnosed with cancer, remember this. They may never talk about it or they may talk about it often. Listen to them.

They aren't asking you to make it better. They want you to sit with them in their fear... their sadness... their anger... just for the moment. That's it.

Don't try to talk them out of how they are feeling. That doesn't help. It will only make them feel like what they are going through is being minimized. Don't remind them of all the good things they still have in their life. They know. They are grateful.

But some days they are more aware of that gun pressing into the back of their head and they need to talk about it. Offer them an ear.

Source: The Teal Society, @thewombtangclan


No Evidence of Disease, Lingering Trauma

There is no timestamp on trauma. There isn’t a formula that you can insert yourself into to get from horror to healed.
— Dawn Serra

In the US, 1 in 2 women and 1 in 3 men will develop cancer in their lifetime. It is often said there are four phases to dealing with cancer; diagnosis, waiting for test results, treatment and the period following treatment or remission.

Thanks to advances in treatment and early detection, more people than ever are becoming cancer survivors.  As survivors, it’s often understood but less often spoken about that the assault to our bodies and minds as cancer patients extends far beyond our last treatment cycle.

Remission itself brings reassurance and a sense that period of calm and recovery is now within reach. You have been given a second chance to rewrite the rules and try living differently with greater appreciation. In truth, remission does NOT mean you are all clear. Instead, remission the hope that your active cancer treatment is about to be a closed chapter in your life. It means finding a way to move forward while still under routine monitoring for potential relapse.

 Life goes on and relief flourishes after you are told you are in remission. Then, a few months go by and the next appointment looms on the horizon. The cycle of dread and worry repeats. This cycle repeats over and over for the first few months and sometimes up to five years or more after you are diagnosed.

I’ve learned part of living in remission is learning to manage the fluid emotions of joy and gratitude intermixed with the feelings of guilt, shame, anger and fear. Post-cancer life is often interwoven with moments of empowerment followed by a somber reckoning that this way of life has become your “new normal.” There are periods of immense joy and elation that come with the news you are “in remission.” Then there are long periods of waiting and worrying if the next visit to the doctor will bring more freedom or news of a potential relapse.  There are countless daily reminders of what you have been through and the reality of what could be around-the-corner.

Guilt

At times, I’ll be the first to admit I often feel a sense of guilt when it comes from my cancer treatment. Guilty for being able to receive one of the latest advancements in cancer treatment (immunotherapy) and surviving when so many others who were diagnosed after me, some younger than I, have since died. Guilty for going on about my cancer journey long after my treatment has finished. Guilty for not always remembering to be thankful and seize the day. And guilty for all the trouble and worry I put my loved ones through.

Anger

Some people (myself included) become angry after treatment. Some struggle to get past the trauma, while others learn from it and use it as a catalyst to live life in a completely different way. Any traumatic life event that you go through will leave scars and people survive in different ways. Chemo and radiation save our lives, but they also cause a hell of a lot of side effects, including secondary cancers and painful, lingering side effects like neuropathy and gastrointestinal issues.

Feeling Broken

For most cancer survivors, the first year in remission is often the most difficult This is because when you’re in remission, it finally hits you that you literally almost died and spent the majority of the last year fighting for your life. It’s a startling realization to take in and fully process. When you’re going through treatment, you’re in survival mode—too sick and tired to actually realize what’s really going on. Remission lends the opportunity to reflect on the good and the bad. Getting diagnosed and treated for cancer can leave you at times feeling broken, helpless and largely distrusting of your body. In my experience, remission at first turned my survival mode into a state of hyper-vigilance where any unusual symptom made me flip out and almost convinced I was in the throes of a possible relapse.

Cancer survivors are tasked with carrying on with their lives by learning to adapt to a “new normal” that comes with being in remission. We must rediscover who we truly are under all the layers of trauma our cancer treatment may have caused. We must learn to find our footing and move forward amidst the shifting sands of fearlessness and fear, confidence and worry, relief and calm, certainty and uncertainty. Our sense of cautious optimism grows with each disclosure that our cancer has not spread and there is no evidence of disease. Over time, we learn to breathe a little easier, while the fear is always there—it seems to move further and further to the back of our minds.

Addressing and understanding the emotions you are experiencing as a result of cancer or any disease is difficult. It’s painful. But I’ve come to learn and accept it’s entirely necessary to heal. Seeking out community—a therapist, friend or family member, or a support group of others who have experienced similar trauma like cancer—is a crucial step in recovery. I’m hopeful that in time I will be able to transform this horrible, traumatic experience from an endless stressor into a source of strength.

Overcoming Fear with Gratitude

One way I am trying to overcome my anxiety and lingering fear regarding my treatment is by expressing daily gratitude. The latest research in neuroscience shows that when we practice gratitude we are actively rewiring our brains and naturally boosting our serotonin levels. According to neuroscientist  Dr. Alex Korb, all we need to do is simply ask, “What am I grateful for?” No answers are necessary. Just searching helps.  

Some ways to practice gratitude:

  • Keep a gratitude journal.

  • Tell a loved one or a friend something you appreciate about them.

  • Look at yourself in the mirror and think of something you like about yourself.

  • Sit in a quiet place and think about when something went well. How did that feel? Practice that feeling every day for a week.

  • Next time something bad happens consider 5 good things that happened as a result of this event.

  • Write someone a thank you note.

  • Write it down, talk about it, think about it, re-live it, meditate.

 

It has been said that trauma creates change you don’t choose; whereas healing creates change you do choose. There is a great transition from patient to survivor. I believe the journey from patient to survivor begins with patience. We must be patient with ourselves and give our bodies and minds time to heal from all the trauma we have endured. Healing comes moment by moment and one breath at a time.



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Sources:

  1. Cancer Truths- The Teal Society  

  2. '1 in 2 people will develop cancer in their lifetime'- Medical News Today, 2015

  3. The Upward Spiral: Using Neuroscience to Reverse the Course of Depression, One Small Change at a Time  by Alex Korb, PhD