Joe Bullock

How you doing? I know grammatically it’s not the correct way to make that statement. It became a popular phrase in the mid 1990s because of the television series “Friends.”

I remember being young, single and wishing I had the charisma of the character Joey from that TV show. I know it’s silly, but generally the responses I got were not very truthful and I was just trying to impress the person I was speaking to at the moment. Namely my girlfriend that I was dating at the time, and I guess she saw past my facade. For some reason she agreed to marry me a few months later and we've been together 30 years.

Shortly after we got married, I had a scare with testicular cancer, and I quickly avoided anyone asking me that question. I just got tired of explaining the fear and anxiety I was feeling at the time. My wife and I had not gotten back the test results or the pathology from surgery I had undergone at the time to see if I had cancer. I just felt very misunderstood by anyone other than my wife at the time.

The results did come back negative for cancer at the time, but the experience did give me a better understanding of how responding to that simple question can be paralyzing for so many people affected by cancer.

A few years later, I would face this similar question as a caregiver for my dad battling prostate cancer. He had a long road that would eventually lead him to hospice care in the end. I never had to ask him how he was doing because it was always right in front of me. I could tell by the look on his face how he felt or would respond.

I quickly focused more on how I could help him and less on how he felt during the ordeal he was facing. He told me he hated it when doctors would come in the room and ask him how he was doing. He would say to me, “Can’t they tell how I’m doing? Aren't they doctors?”

He would eventually ask me to take over and respond to the doctors on his behalf. I learned through that experience to focus on how my dad was feeling and just listen to him. The greatest and most caring thing I could do for him was to be in the moment with him. At that moment I didn’t understand what he was facing, but this would give me a greater understanding of the path of a caregiver as I faced becoming a cancer patient myself in the not-so-distant future.

A couple of years later when I was 50 years old, I would be faced with a stage 3b colorectal cancer diagnosis after a routine colonoscopy. My GI doctor who performed my procedure didn't ask how I was doing nor how I felt about being diagnosed with cancer. He would say three simple words to me that day that would change my cancer journey immensely at the time. Those three words were “I got you,” as he laid out a plan of action for me.

He had already contacted my colorectal cancer surgeon and my new oncologist that day. His response to my diagnosis would completely change how I saw my cancer. and in many ways, how I supported others in the cancer space as an advocate many years later.

I left my doctor’s office that day with a lot of worry about an unclear future with my cancer diagnosis, but I did have the confidence that we had a clear plan going forward with my disease. How my doctor approached me about my cancer made a huge difference in how I saw myself as a patient.

It’s something I would have to remember in the months ahead as I face the barrage of well-meaning people who would ask me how I’m doing on any given day. People generally mean well as they face the idea that they could be diagnosed with cancer themselves. It’s a fact that one out of two people may be diagnosed with cancer in their lifetime. That was a fact that scared me before I was diagnosed with cancer myself.

So next time instead of asking a cancer patient “How you doing?” Just ask “How can I help you?” Sometimes they just need you to be in that moment with them. Just reach out a hand and tell them that “I got you and I’m here for you.” Those are the people who offered me the most support as a cancer patient. Now that I’m a five-year survivor of cancer I look for ways to offer that same support every day. There are days we all need each other in the fight. We cannot let the fear of cancer prevent us from offering help to one another.

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Articles

When I was in the throes of cancer, I didn't know how to answer well-meaning people who asked, "How you doin'?" 

'How You Doin'?' Can Be a Tricky Question to Ask Someone With Cancer

Being a cancer survivor, there are those moments that unexpectedly just hit me and make me feelcheated in life. It can either feel like I have lost something inside of me or it can be the worry about the unexpected path that might be ahead of me. It can also be the guilt of my existence as a survivor that presents itself at a certain moment because I don’t believe that I deserve to be alive.

It’s hard to explain these type feelings and emotions to my loved ones. Many times, I have felt different emotions like anger or extreme sadness, and I often feel very misunderstood.

The other day I went outside to rip apart an enormous wild cedar bush that had grown next to our house. I recently had felt those waves of emotions hit me over the days prior because I lost a friend to cancer, and I also had some physical pains that made me worry my cancer might have returned. It felt good to take my aggregations out on doing something physical with my hands instead of navel gazing and worrying about something I could not control at the time. It’s this type of physical therapy that gets me past those moments.

I have sat in my therapist's office trying to explain these feelings and left with no real clarification. Sometimes it helps me to just let others know these feelings exist in my life. I tell them that they can’t fix how I feel because it’s about my survivorship. I just make sure they know it’s OK to be in that moment with me.I'm not rejecting them; I am just trying to get through that moment. I’m certain It won’t be the last time I feel this way. It is something I am learning to accept but I don’t expect others in my life to understand. 

There is an unexplained sadness that lives with cancer survivorship. I think that’s what causes the survivor’s guilt that I struggle with so much as I try to move forward in our survivorship. Sometimes I feel like an imposter in a foreign land because I survived cancer.

There have also been a lot of missed opportunities because of my disease and sometimes I just feel cheated. I have spent some time the past couple of years trying to regain some of the times I had missed while I was in treatment for my cancer. Unfortunately, those days just can’t be regained.

There are days I feel the guilt of my own survivorship. I can choose to stand with it or deny its existence. I can make the choice to move ahead from it and not allow it to overtake and consume me. Cancer didn’t take me down and today I moved forward. Sometimes I have to remind myself of that fact.

I’m not perfect and I make mistakes. I give back the best way I can no matter how cruel the world may be by denying the survivorship to the ones I love in the cancer community. As cancer survivors, we need each other in this world because no one should have to battle cancer alone. We need to do better as humanity because life is a gift that shouldn’t be denied to anyone. Everyone should have access to the health care they may need. No one should be cheated out of that opportunity.

Cancer took so many experiences away from me, yet I sometimes feel guilty that I survived and others did not.  

I Feel Cheated as a Cancer Survivor

I have never been one for new years’ resolutions, but every year since being diagnosed with stage 3B colorectal cancer in 2018, I know we are all in the throes of the resolutions we might have committed to this year. I have tried to take on a new challenge to celebrate my survivorship from cancer each year.

In the fall of that year as I was going through chemotherapy treatments, I thought my goal for 2019 was just going to be to survive cancer. I had a few more treatments to go through into early 2019. At the time I was honestly living in a fog of depression and the worries that my cancer might recur.

When I was at my last oncology appointment of that year my oncologist asked if I had any goals for the upcoming year. I said to him, “just to survive cancer.” He paused for a minute then said to me," Let me worry about the cancer. I want you to focus on life. If I have anything to do with it, you will live a long one." He was so confident in his words that I started to believe him.

A few weeks later I was fumbling around the house, and I was feeling a bit lost in myself. I was just starting to accept that I was found to have no evidence of disease. It’s something that can be a bit shocking to most patients like me after the months of treatments I had endured.

One day my wife said to me, “I think you need to find what you are passionate about again in this life.” I decided she was right, and I needed to find that passion for life that cancer had taken from me. The loss of identity and purpose in life can be a struggle for survivors of cancer. I had found my goal for the new year, and I just had to figure out what I was passionate about again in this life. I knew there were three components to this passion that was being fueled in me: my wife who believed in me, my children who loved me and oddly enough the cancer that I had been battling at the time.

I had decided at that point that cancer might be done with me but I wasn't done with cancer. Every goal needs a mission statement. I think I had found mine, and the passion to go with it. I just had to figure out what I was going to do about it.

I would learn in the coming months that a goal can not be reached alone and you need support from others to make it happen. My cancer journey in many ways was just the beginning for me.

Early into the year 2020, I decided that I would continue to build my life as an advocate for others battling cancer, especially men. I joined a Facebook group called “The Howling Place,” with manuptocancer.com created by my friend and fellow cancer survivor Trevor Maxwell. We affectionately call it a “wolfpack” because of how wolves care for one another in a pack. I was so involved in the weeks going forward that he asked me to be the lead administrator for the group. I had been seeking a way to encourage men in the fight with cancer and I thought this might be it.

I would quickly find out that was to be true. I began inviting all the men that I knew battling and surviving cancer to join the group. There would be about 400 of them joining the group over the first few weeks after the group was created. We currently have 2,000 male members strong in the group.

My wife told me in the months ahead, “I think you found your passion again with that 'wolfpack' group.” I think she was right, and I could not have done it without her. I had found my passion for being an advocate in the cancer community and that would fuel my survivorship. Over the next couple of years, I struggled with survivor's guilt in the months ahead and to find my footing as a cancer advocate. It sparked a lot of personal growth and helped me to emotionally connect to my cancer as I helped other cancer patients in the fight.

In 2023, my goal is to continue building my role as a patient advocate and to support other cancer survivors in the fight through the various organizations I am involved with. I hope to take opportunities to meet up with local members of the Howling Place group for lunch or coffee. It was something that I desired early on when I was diagnosed but wasn’t available to me at the time. It was hard to find anyone, especially men to talk about their cancer. It’s something as a goal I am trying to work on with the support of others because no one can be a lone wolf in the survivorship of cancer. 

In 2023, my goal is to continue building my role as a patient advocate and to support other cancer survivors in the fight through the various organizations I am involved with.

Celebrating My Cancer Survivorship

Another day, another cancer screening. A lot of men fear getting diagnosed with cancer, so they avoid their regular health screenings. Honestly, I did as well because if it wasn’t for some common symptoms for colorectal cancer like blood in my stool, change in bowel movements and unusually fatigue I would have ignored it myself. Luckily my wife encouraged me to get screened, which ultimately saved my life.

I had an appointment with my dermatologist recently to check if any more skin cancer is found on my body. I have had three skin cancer surgeries over the last four years. The last surgery she had to go into the second layer of skin to get clear margins. Those sunny days working on my grandfather's farm and the endless sunbathing at the beach in my younger days are playing against me today.

I also had a colonoscopy a few months ago as follow-up care after surviving stage 3B colorectal cancer almost five years ago. I had no new polyps and my recent follow-up scans show I continue to be cancer free. I am relieved but realize I must continue my follow-up care to prevent recurrence. I will move into a five-year surveillance plan for colorectal cancer in a few months.

The proper screening age today for colorectal cancer is age 45, but I did not get my routine screening for colon cancer until age 50. The cancer was known to have been living in my body for seven to 10 years before I had any symptoms, as a precancerous polyp eventually turned into a 10-centimeter tumor that had to be surgically removed along with three cancerous lymph nodes. If I had gotten screened earlier, I might not have had to endure the chemotherapy I did to survive it.Early screenings could have prevented this from happening. A colonoscopy is not fun for anyone, but I learned that a couple days of discomfort can save you from years of treatment to save your life.

I have my PSA checked yearly for prostate cancer screening because my dad developed prostate cancer in his early 60s. My recent follow-upsscan for my colorectal cancer also showed my prostate to be of normal shape, and my PSA is low and normal as well. Being over 50 and with a family history, I make it a point to have it checked yearly.

In my early 20s, I had an undescended testicle surgically removed to prevent the development of testicular cancer. I thought I was just born a “uniballer” until a doctor told me during a routine physical the risk of developing this type of cancer. Testicular cancer is a fairly common type of early onset cancer in men between the ages of 15 to 35. A simple monthly self exam or routine physical from a doctor is the best way to detect testicular cancer.

Many men go to a doctor when they have a serious medical condition, which can be a major misstep in men getting proper cancer screenings done.

Just because you survived one type of cancer doesn’t mean you can’t be diagnosed with another. It’s essential to keep up with your regular health screenings.

Many men — my former self included — can be stubborn when it comes to cancer screenings or visiting the doctor. Thankfully I’ve changed my ways, which saved my life.  


I’m No Longer Stubborn When It Comes to Cancer Screenings

Early on in my cancer journey I read this statement a number of times: “Don’t waste your cancer.” 

I think I had even read a couple of articles that may have mentioned this statement or quotes written that may have referenced it. Being a fairly young cancer survivor amid my own cancer journey, I even had that same statement directed towards me by both survivors and well-meaning supporters of the cancer community.

Honestly, in the beginning I did not understand the meaning of this statement. I would lie in bed at night recovering from my cancer treatments and wonder how I am wasting my cancer. Wasn’t it enough that I was going through treatment for my cancer at the time? Do I need to do more? 

This was one of those insomniac-fueled nights that chemotherapy can bring as one of its many gifts. I think my brain was just so overloaded with all I had been through up to that point and I just ignored the thought at the time.

I get it we need to raise funds to support the nonprofit organizations that support the much-needed research for a cure.I totally understand the statement and its purpose in trying to motivate survivors to share our stories to have an impact. I’m all for early detection and saving lives. Sharing our individual stories is one of the most powerful ways to create progress in getting this done.

Looking back, I think telling us not to “waste our cancer” was just a way for various cancer organizations to play on the guilty emotions we all feel as cancer survivors. It was created to manipulate us into thinking we aren’t doing enough to promote the various causes. 

I know I’m being a bit harsh, and it’s a statement that can be triggering for some but a source of motivation for others. I have felt both in my cancer journey.

As I am about to approach being five years no evidence of disease (NED) from stage 3b colorectal cancer. It's hard to believe how much I would lie in bed at night after my chemotherapy treatments reading through 

 looking for some sense of support as a patient. Honestly with all the Google posts about treatments and research I just felt a bit lost, and I decided to just stay the course that my medical team had laid out for me. Dr. Google definitely wasn't helping at the time and it was the more personal stories about my fellow cancer survivors that drew me in which at the time gave me hope.

So, no, I am not wasting my cancer, but I survived it. If you have fought this battle with cancer and survived, you have not wasted it. You now have the opportunity to live the life you choose full of love and light. I decided long ago on this journey that I do not choose whatever this cancer experience brings to me. I would consider my interest and be at peace with my decision to choose what I choose to take part in the cancer community.

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I’ve heard the phrase, “don’t waste your cancer,” as a way to encourage survivors to tell their stories and donate to nonprofits.  

Are You ‘Wasting’ Your Cancer?

In my cancer journey, one of the best statements I have ever heard was “It’s OKto not be OK. Just don’t live there very long.”

When I was in treatment for my stage 3b colorectal cancer, I would lay around most of the time feeling guilty because I was so sick from the side effects of chemotherapy. I would hide in my room because I felt disgusted and just did not want people to see the shape I was in at the time. It was like all those stories I would read as a child about the troll who lived under the bridge or the ogre in the cave. I felt that I quickly became something frightening, cruel and difficult to deal with at times to my family and friends.

If it wasn’t for my dog,Wren, I probably would not have left the house at all during those dark days of chemotherapy treatments. It was that kind of emotional turmoil that prevented me from seeking support in the beginning of my cancer journey.

Cancer is not pretty, and it's not meant to be, no matter how much the media may glamorize it. Always being positive and staying strong isn’t the reality of a cancer patient no matter how much people try to convince us we should be at times. When you are in treatment you just feel sick and tired of being sick and tired. People tell you that you are an inspiration for what you are going through with your cancer treatments but in the back of your mind you know they are just hoping it never happens to them. I say that because I did the same thing before I was diagnosed with my own cancer.

My wife has been a nurse at our local hospital for over 30 years. Early in our marriage and before we had kids, I would go visit her for lunch. I would walk on to the hospital campus and often watch people, hoping I would never find myself in that situation. I would smile as I walked by and offer assistance when I could, at times thinking I would want someone to do that for me.

I remember telling them “God bless” or “stay strong,” if only to just appease myself but not really to encourage them. I even had a scare with testicular cancer in my mid-20s and feared I would be the one getting so sick because of all the images I had seen of what men go through with this type of cancer. I remember that if I even mention to my male friends the possibility that I might have cancer they would cringe, and the conversation shifted quickly to another topic. Even though at the time, I really needed to talk to someone about the fear I felt of being diagnosed with cancer at the time.

I think a lot of times as a cancer survivor we live in the “seen-and-not-heard’ mentality. People see us or know we are a cancer patient; they just don’t want to hear about the struggles and pain we are going through. We are typically 

I’ll admit I did the same thing before I was diagnosed with cancer myself. It’s just the fear of the unknown and it’s something we understand even more with worry of recurrence with cancer.

I think the first time I heard the saying,“It’s OK to not be OK.Just don't live there very long,” I think it gave me the ability to face my own sorrow in my cancer. There were times during chemotherapy treatments that I would spend most of the day in tears.

My therapist would encourage me to get up and go for walks, take a shower, play with my dogs and go outside to sit in the sun. I guess that's where the“not living there very long” comes into play. I would even do crazy stuff like put a bag of frozen peas on my head to change my body temperature. Honestly the last thing I wanted to do was to talk to someone about my cancer.

I would finally open up to my therapist to not burden my wife because it was becoming hard for her to be my only sounding board. I would eventually join a cancer support group at my cancer center, seek support through a couple of online and Facebook cancer support groups. I slowly started to understand as a cancer survivor there are days when I just am not going to be OK but I can choose to not live there very long. 

I did start to open up to more people about my cancer, but it was all just a process. Today I lead a men’s cancer group on Facebook called The Howling Place group created by my friend Trevor Maxwell as a part of manuptocancer.com webpage. We encourage men to share what they are going through in a private space that is for men only. We have grown to about 2,000 members since we started it in early 2020. It given me purpose in my survivorship and a way to offer support that was hard for me to find in treatment.

Going through chemotherapy treatment was extremely difficult, and eventually I learned that sometimes, it’s OK to not be OK.

It’s OK to Not Be OK With Cancer

When I was diagnosed with stage 3b colorectal cancer four years ago, my life completely came to a standstill. That one sentence said to me by my GI doctor that day was one of the shortest ones I had ever heard but had left the biggest impact on my life.

When you are suddenly diagnosed with cancer in the middle age of life, it kind of marks your life into “before” and “after” cancer categories. There are a lot of spaces that are taken over in your mind because of cancer.

My family had plans for the future before I was diagnosed with cancer and quickly put everything on hold, which I hated to do to them.

The guilt of becoming a cancer patient creeps in slowly. These "cancer voids" are no longer just impacting your life, but the people that you love.

At a time when my wife and I should have been enjoying all our teenagers’ extracurricular activities, home renovations and planning future family vacations, I was left working with my care partner and medical team on exactly how I’m supposed to survive cancer. 

We all felt those voids creeping in on us all together.

I think when you spend months going to treatments, followed by years of appointments and various scans to make sure the cancer is not recurring, it can be so mentally exhausting to the point you just can’t get your head above water.

Then slowly you can find a break in the tide that opens your life to leave those voids that cancer has created. I felt, at times, that we lived in limbo as we waited in those spaces or voids between follow ups and scans appointments. Those periods would spread out even longer and filling those voids would become longer. As a patient, it made me feel guilty for what I was putting my family and friends through.

I have spent the last couple of years filling those voids of time by supporting various cancer organizations and sharing my story of survivorship when given the opportunity. Much of my focus has been trying to support other men whoare dealing with a cancer diagnosis. Most of the time, it's just being a listening ear, giving them a place to vent or advocating for them — something that I probably burdened my wife with when I went through treatment.

A couple of months ago, I went to a men’s cancer survivors retreat called “The Gathering of Wolves” with the members of a Facebook group called “The Howling Place,” which is a part of the Man Up to Cancer platform created by my friend, Trevor Maxwell, a stage 4 colorectal cancer survivor.

I am the lead administrator for the Facebook group, which is one of the ways I have filled some of those cancer voids.

The Gathering of the Wolves event was the first time I had met many of the cancer survivors of the group. Some of them I had spent much time over the last couple of years supporting their journeys, which none of us ever expected to be a part of together.

Being around that group of men during the retreat inspired me to break through those voids and start to live life again.

I started looking at a few of the things that my family had put off because of my cancer diagnosis, including building a new deck behind our home. My wife and I decided to put it off when I was diagnosed because we did not know where my cancer might lead us and it probably wasn't the best financial decision for us at the time. I would lay on the couch and feel totally guilty that I couldn't get that done for the family.

Then when I did survive cancer, I worried that the cancer might recur, and we would need that money in case I couldn’t work if I had to go back into treatment.

But now, since I am almost five years cancer free, we decided to build the new deck.

Sometimes as a cancer survivor you must take risks and hope for the best. Building the new deck was a risk worth taking because I was no longer allowing those voids that cancer caused to control my life or that of my family.

A couple of weeks ago, our family had our first dinner on our new deck. I was no longer just a cancer survivor, but a grill master. I was finally able to give back to my family what cancer tried to take from us.

My family put off future plans because of my cancer, but now I’ve decided to take risks and do what we always hoped to accomplish. 

On Living Life and Filling the Voids of Cancer

There is a greenway that runs through the heart of Durham, North Carolina known as the American Tobacco Trail. About 50 years ago, it was a railway for tobacco farmers from the eastern part of the state to send the tobacco harvest to the auction warehouses that Durham was known for at the time.

My grandfather’s property was right along the edge of the railway at the time. It was across a large corn field and through a rugged tractor trail into the woods to reach the railway. I would hear a train whistle a couple of times a day as a kid. One of my favorite books as a child was "The Little Engine That Could” by Watty Piper. My grandmother would read it to me many times before nap times. I would ask my grandfather if we could go for a tractor ride through the woods to see the 4:00 train pass the property.

I can’t exactly remember when I stopped hearing that train whistle or when the trains stopped using that rail, but over time it slowly stopped service.

About 20 years later, the rails from the track were removed and it was transformed into the greenway it is today. My wife and I walked on that very greenway and talked about our future together. We would eventually build a house of our own on my grandfather’s property. Many times, we brought our kids out to ride their bikes and go for family walks with our dogs on this very trail.

Five years ago, I was walking on this very trail to gain perspective about my cancer diagnosis and the unquestionable road ahead. That was one of my longest walks I have ever had on this trail. I think I walked for hours in disbelief at the time that I could have been diagnosed with cancer. I have had a couple of scares with cancer in my life, but never believed I would be diagnosed.

A few days before this walk, I was officially diagnosed with stage 3b colorectal cancer after a routine colonoscopy at age 50. Shortly after I started treatments for my cancer, I would try to keep up my walks on the trail. There were many days I felt like “The Little Engine That Could” after trying to walk days after chemotherapy treatments. Some days I could barely walk a quarter of a mile, and other days I walked four.

Sometimes I think of this place as my church —it’s where I feel close to the earth and the universe around me. The trees hang over the trail like I am entering a gothic cathedral. I have found comfort in its surroundings and peace in a world that, at moments, there just isn’t any.

I have felt worried, angry and have cried about my cancer many times during the many walks over these past four years. I have come to this place to mourn the loss of my friends who have fallen to this disease as I have walked on this trail. 

I have tried to seek hope that in the future, I will be able to watch my children grow up and to hold my wife's hand for years to come. I have searched for guidance to be a better man, husband, father and friend in the face of cancer as I have strolled along this very trail. 

The trail has become a part of me, and I can hear it’s calling on a regular basis just like that train whistle I heard as a kid. I hope to one day bring my own grandchild to walk along this greenway if given that opportunity.

I feel truly blessed to have a place like this to find communion and friendship in the face of cancer. Especially with friends like my buddy and fellow cancer survivor Brian Brave who walks with me regularly. As we walk and talk about not only our cancer but our lives ahead and the people we love.

There was even a period when we thought Brian might have a recurrence of his cancer. I was glad we had this space to talk about it and gather much-needed support for him.

It’s not often you get to have a place like this that becomes such a part of your daily life. I know that not even cancer can take that away from me. I will continue to listen to its calling and imagine the train whistle of my youth.

Walking on the American Tobacco Trail has become church-like to me, as I ponder life with cancer.  