March 2022

NED! HOW'S IT GOING FOR YOU?

In the cancer world, there is one place that everyone wants to get to: No Evidence of Disease. In short, we call this being ‘NED.’ For those who like to have fun with it, we also say things like living in NED-ville, or dancing with NED. No matter how you say it, NED is an awesome place to be for any cancer patient or survivor.

In this month’s edition of the Trailblazer, we ask men of the Howling Place group to talk about their experience being NED. Special thanks to Christopher Berberabe, Boyd Dunleavey, Stephen Westphal, Warren Taylor, and Joe Richardson for contributing.

— Joe Bullock, lead administrator, Man Up to Cancer - The Howling Place (Also known as The Wolfpack)

Christopher Berberabe

Port Washington, New York

Stage 3C colon cancer

In May 2020, I was diagnosed with Stage 3C Colon Cancer. To remove the tumor, I had to remove part of my colon, then go through 4 months of adjuvant chemo. In September 2020, I finished treatment, had post treatment scans and was declared NED (No Evidence of Disease). Those not going through treatment or being a caregiver, that meant it was the finish line, the goal to reach so you can go back to living life like normal. You can put cancer behind you! Except you can’t…

I soon realized that the life I had before cancer no longer exists. I tried to forget about it but cancer didn’t forget about me. Every symptom I felt was a reminder that cancer could be back: pain in my shoulder, a headache, a PIMPLE! I’ve become hyper aware of any abnormalities and have to try to assure myself it’s not cancer. I live my life in intervals. Every few months, I check with my oncologist to see if he will give me another lease until the next scan/bloodwork… I try to talk to my friends and family about how I feel, but they don’t understand, or maybe I don’t understand, or maybe both. I hear things like “You got this”, “Stay Positive”, “You look Great!”, but my thoughts just respond with “You don’t get it”, “How would you know”, and “if you only knew how F#@%‘d up my head is”…

As I lament the loss of my old life, I’ve also discovered that cancer is empowering. There is something freeing about being reminded that life is short. I have done things in the past 2 years that would have probably taken 8-10 years to finally decide/work on pre-cancer. I am willing to take more risks and focus on what makes me happy. Cancer has helped me filter out people who are not “life giving”, and appreciate those that bring me joy. It also strengthened my faith; for the first time in my life I knew that no matter how hard I worked, this was not something I can do on my own, and truly understood what it meant to go down on my knees and ask God for help.

Yes, my old life is gone, but I’ve also been granted this new one. What would my life be like if I never had cancer? Life is too short to dwell on what I can’t change. Each new day is a challenge, but each new day is another blessing to be thankful for, another day I can spend time with loved ones, and another day I’ll live my best life, until my next scan…

Boyd Dunleavey

Moncton, New Brunswick, Canada

Two time blood cancer survivor

Thanks for allowing me to share my story! I am a two-time blood cancer survivor, and it was a decade ago in 2012 that my cancer finally got into remission for a second time and there was no more cancer... NED (no evidence of disease).

I needed to be in remission to be able to have my life saving stem cell transplant (May 2012). That was one of the hardest experiences of my life. Coming home from the hospital I got a virus that caused permanent spinal cord and brain trauma. I started running in 2013 in spite of the ongoing health issues, and a lot of that was for mental health reasons.

The other really neat part about my story is my stem cell donor is an American Naval Serviceman named Nathan Barnes who was in Japan when he saved my life! I met him at Disney in 2019.

https://disneyparks.disney.go.com/blog/2020/05/disneymagicmoments-runners-who-inspire-us-part-2/

I am training for the 2022 Boston marathon and it will be my 10th marathon 10 years after my life saving stem cell transplant!! This one is for those touched by cancer. NED is a blessing. Getting free from people's judgements or criticisms is as big of a blessing! I chose to look at the blessings and stay away from negative people.

People have criticized me at times for being able to run but not work. I don't have the time anymore for foolish arguments. I had over 200 medical appointments one year, about 4 a week. Dental care, eye doctor, chiropractor, psychologist, cancer check ups, blood work... the appointments did not stop.

One of the silver linings to being permanently medically disabled was being allowed to run the Boston marathon 3 times in a row; from 2016-2018.

Steven Westphal

Filer, Idaho

Squamous cell carcinoma

I was told in March 2020 that there was no evidence of cancer in my jaw. My oncologist thought that was a very positive sign for a very aggressive cancer that came out of the blue. There's no history of cancer in my family, but I drew the short straw. The squamish cell carcinoma that I had was very rare.

My oncologist told me that 1 in 10 million people will have this cancer. I constantly think about it even though it's gone. How did it happen to me and when will it happen again? That thought never leaves me. I have decided that I have to share my thoughts and feelings with others as a way to keep my mind together. It helps and this group is a huge part of my life now. Cynthia has told me several times that my attitude about life has changed since I became a member of MUTC.

My faith in God is strong as he is always with me. He has given me the opportunity to share my experiences with others and lift others up. Thank you Joe for your leadership.

Warren Taylor

Lake Forest, California

Stage IV colorectal cancer

3 WORDS 3 LETTERS “You Have Cancer” AND "NED"

The 3 words that open your eyes, drop your chin to the floor and put your heart in your throat in an instant. I will never forget. Those of us who have heard the 3 dreaded words know the “Club” you have joined. Over the next 3 years it took a lot out of me physically. Mentally all I could concentrate on was how to get through the next round of chemo or the next surgery.

Numerous planned hospital visits or unplanned ER visits with extended stay in hospital begins to take their toll on you mentally and physically. As a football coach an ex athlete I pushed through the mental state without ever giving it a second thought, not knowing how this would take its toll in time.

With a diagnosis of Stage IV CRC and given the percentages of life expectancy you battle. As the days, months and years pass from the first day of diagnosis to now I have come to know that the mental part of it is not “sunshine and rainbows. I have worked hard mentally to keep up the hope for a longer life.

At last, about 4 years into treatment I heard the term NED and the doctors told me I was stable and I could extend my time to 6 months for my next scans and checkups. You would think that you would “Dance like no one is watching”, “Sing like no one can hear” or “Jump on the bed like a Kid”. That was some of the feeling I had as I left the doctor’s office that day. But that quickly changed. The hidden struggles began almost as soon as I left the doctor’s visit that day, I just did not know it.

Soon the anxiety or depression and even survivor guilt started hanging over me like a dark cloud. I remember when I first noticed it. The anxiety made it hard to leave the house. I would lose sleep because of it and that would increase the depression. My friends began to notice that I would not return calls or would not answer the door, they called it hibernation. In the beginning they thought and would tell me later that I had been through so much that I wanted time alone. Completely the opposite, I needed some adult conversation and some coaching to go to therapy.

The mental part of being NED is just as hard as the physical part of treatment if not more difficult. Your mind works overtime trying to find a balance in all that we go through. The chemical changes from chemo and the drugs you are taking change. Physically we learn to listen to our bodies, rest when needed, hydrate as much as you can and try not to stress. The new normal they call it. Yes, life changes, but understanding the mental part of your treatment and post treatment is what I think is the most important. Why because we have control over the mental, we do not necessarily have control over the physical.

PTSD, survivor’s guilt, anxiety and depression can come to you after the treatment. Doctors work with you on the symptoms, treatment and medication, don’t be afraid to ask or tell the things that are going on mentally so they can point you in the right direction.

You or anyone else cannot help if you don’t speak, keeping it bottled up does not work or thinking with your pride that you can push through doesn’t work. Man up and ask for advice or help. I finally did!!!

Joe Richardson

San Diego, California

Soft tissue sarcoma stage III

Here is a synopsis of my journey of NED.

1. The Beginning of NED - After radiation, followed by 2 major surgeries that rendered all clear margins, I was declared NED. After 7 weeks in hospital/rehab, this skin & bones skeleton body finally got to go home under the care of a visiting wound nurse. Everything was so different & so strange after being so closely watched & monitored constantly for over 6 months in a secure environment. It was like a lone wolf being released into the wilderness & reborn where I felt like a stranger in my own life. Just over a month into recovery, a major Southern CA wildfire hit as roaring hot dry Santa Ana winds were pushing this fire westward & mandatory evacuation for me. With a large open surgical wound, right flank, lower back that needed changing 4 times a day, I could not go to a shelter. Panicking & getting upset was not useful. I slept in my car with my faithful dog at my gym parking lot w/24-7 bathroom access 7 miles away overnight. I was eternally grateful to come back to my home unscathed. I realized there are many things in this life I cannot control. Cancer & raging wildfires are at the top of that list of feeling vulnerable & at its mercy. I would soon accept the harsh reality, nothing would ever be the same again. I had fiercely fought cancer & was ready for this new challenge.

2. The Months Following NED - CT scans went from every 6 weeks to every 3 months. The 24/7 fight/battle mode has simmered down at this point as the trauma & reality of what I went through settled in. I mourned my old life before cancer & the friends, family & neighbors who chose to abandon ship or figured I would be 6 feet under in 6 months. It is always important to never ever repress your grief. They took shelter in avoidance of facing their own mortality. My response? I forgive them & set them free. Yet, I embrace the ones who were there by my side as well as my oncologist, oncology radiologist & the skilled surgeon who saved my life. I have had several recurrence scares & grateful they all turned out to be false alarms. That triggered PTSD & depression. My best weapon to effectively fight this is regular exercise. I am very passionate about physical fitness & no one was going to stop me from going back to the gym or stop my enduring power walks. My surgeon estimated post surgery, I would be back to the gym in 9 months, I was back just under 3 months. Cancer had already destroyed & stolen enough from my life. It was NOT going to take my gym away from me. HELL NO! It felt great to establish a sense of normalcy & not having constant doc appts, CT scans, blood work, crisis moments at the centerpiece of my life. The gym is truly my psychological healing as well as the motivation & discipline of the spirit.

3. The Year After Being Pronounced NED - At this point, CT scan schedule expanded to every 4 months. Sadly, I lost 3 close friends who I battled cancer together within a 5 months period. The sadness was overwhelming as we shared a close camaraderie. I never ever wanted to be the lone wolf survivor. Survivor's guilt is very real. I had gained more muscle & 30 pounds back onto this ravaged body. I am hitting the gym stronger at this point & overhauled my dietary needs & created my own healthy blender drink. Remaining NED was my goal. People see how visibly healthy your physical appearance is. However, on the inside, emotionally & psychologically fragile & I could not relate to many around me who had never gone through this & I strongly sensed they could not understand my thought process.

4. Years into NED - After I reached the 3 year mark, CT scan schedule widened to every 6 months. More false alarms added to the PTSD of scanxiety. You go through so many phases of it. Kind of like 2 steps forward, 1 step back. Draconian covid shutdowns had a negative impact on me psychologically. NED is a sacred gift. I wish that for every man in this group. You are relieved you are in the NED zone, but yet, wonder, how long will it last? It can be taken away at any time, without notice, symptoms & without warning. You can never ever take it for granted. Cancer is a wake up call. It is a very humbling life changing experience. SO many lessons learned in this journey. I have endless empathy, support & compassion for anyone from all walks of life fighting this sinister, passive aggressive, cruel disease. It crushes me on the inside to see so many suffer. It's so damn unfair & wrong! Yet, I have zero tolerance for petty, insignificant, drama & have had to kiss those energy thieves goodbye. After going through hell & back, it is so easy to let go of the negative disrespectful ones & set them free forever. Cannot allow the fear of recurrence to prevent anyone from living your life. You can choose to be a survivor, thriver, fighter & live your life with passion on your terms like it's your last day on Earth. Ever so grateful to be alive & kicking. For everyone in this journey, from the recent shock of the diagnosis, going through surgeries, treatments, side effects, crisis moments, recoveries, recurrence & NED, up close & personal, perhaps not realizing it, you are all teaching the living what it truly means to fight for your life. Time is our greatest gift. Spend it wisely. Sincerely, Joe Richardson. Survivor, thriver & conqueror of a very high grade soft tissue sarcoma stage III. Currently at 4 1/2 years NED.

Joe Bullock

Durham, North Carolina

Stage 3B colorectal cancer

The winters here in North Carolina can be trivial at best and it can be a bit of a mixed bag of winter weather depending what part of the state you live in. My buddy JJ Singleton ( pictured to the left) who is a cancer slaying badass, lives in the western region of the state. He can see much more of a wintery and snowy mix than I do where I live in the eastern part of the state.

I grew up in the city of Durham which is known for its Tobacco Road Sports Rivalry, Durham Bulls Baseball and being known as 'The City of Medicine'. The funny thing is that in this part of the state snow and ice can shut the region down for days. This happened the last week of January 2019 right before my first scheduled follow up blood work and CT scans to see if the six months of chemotherapy had stopped the cancer from spreading to other parts of my body.

Since being diagnosed with Stage 3b colorectal cancer I know there was a chance it could metastasize. Even though I was being told there was very little chance of this happening we know that cancer can be a bit of a tricky foe. I wanted to see the scan results that stated my body was 'unremarkable' and there was NO EVIDENCE OF THE DISEASE any longer in my body.

The snow and ice that week had shut down my cancer center, The Duke Cancer Center, for a couple of days. I had been receiving treatment there for the past 10 months for my cancer and I was ready to get this chapter of my life behind me. When I arrived for my scheduled follow up appointments that day you could tell the center was extra busy. My patient navigator had already told me that they were playing catch up from being closed for a couple of days because of the weather. My oncologist was doubled booked and they warned me to expect delays but would get through all my appointments that day.

After hearing this I had overheard the person next to me complaining of the two hour delay to get a CT scan and that they wanted to reschedule their appointment. I was determined not to leave that day without hearing those three letters ' NED'. After about a three hour delay, sitting on pins and needles and two cups of venti size Starbucks coffee, my oncologist walked in the room that day with a smile on his face. He said 'Remember what I told you eight months ago that we were going to kill it. The cancer is gone and there is 'NO EVIDENCE OF DISEASE' ' .

He seemed surprised I wasn't happier because of the news he just gave me. I asked him what do I do next? He said 'Go live your life, be happy and I will see you in three months.' I told him thank you but felt a bit shell shocked as I walked out of his office that day. That's all the information he gave me with no further direction from my medical team. At least when I was in treatment there was a plan to go after the cancer.

Now What? Do I just sit around and wait for the cancer to return? Being that I was stage 3B CRC there was a high probability of that happening. My eyes started to well up with tears as I walked out to the hallway and sat on a bench near the exit of the cancer center. Now that I had heard those letters I started to realize what was happening to me and became overwhelmed to say the least. My wife had been trying to call me for a couple of hours to find out the news. When I finally called her back that day I could barely get the words out. I just said ' IT'S GONE' . She said 'Do you feel better now?' I said yes and then I told her to get the kids together so we would go celebrate. To be totally honest I was terrified but this wasn't about me. It was more about celebrating the ones that help get me to this point and getting our lives back. So much focus had been surrounded by my cancer the last few months it was time to let the ones I love know that I was ok. Even Though my cancer journey was just beginning and major changes were about to happen because of it.

I spent the next three months mourning the death of my cancer till the next follow up appointment. It was as if something had died inside of me and I was left with a hole that needed to be filled. My wife looked at me one day and said ' I think cancer has taken your passion for life away from you and it has stolen your joy'. At the moment I didn't like that she said that to me but she was exactly right.

I decided to return to a couple of months of therapy to get my head on straight and started to find ways to accept my survivorship. I began to reconnect with a few cancer survivors in my local cancer support group. I continued to look for ways to support others in the fight with cancer and to be an advocate in many ways. A few months after Trevor Maxwell asked me to be an administrator of Man Up to Cancer’s Howling Place group, my wife noticed how much happier I was because of the work I had been involved in as an advocate. Being an advocate in the cancer community had become a passion of mine. I had made the decision that cancer might be done with me but I was not done with cancer. I had chosen to be a cancer advocate; it didn't choose me. It has given me a new purpose and helped me find ways to live my best life.

JWT - Volume XXIII

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JWT - Volume XXIII

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