JWT - Volume XV

Joe’s Wolfpack Trailblazers

June 2021

Each year during the month of June we celebrate national cancer survivors month. Honestly I woke up this morning not feeling like celebrating my own survivorship. 

I had a couple of friends whom I was very close to 'Win' their battle with cancer in this past month. They 'Won' their battle with cancer because the pain of this disease no longer controls them both physically and emotionally. These were men I consider my brothers in the fight. I had laughed, prayed, cried, and broke bread with these brothers. I shared my life with them over the last couple years since being myself diagnosed with stage 3b colorectal cancer. 

These men encouraged my journey even with the realization that cancer would take their lives. The reality was they wanted their voices heard and for people to understand this disease. They were a great example to me of what it meant to be so selfless in the fight. They truly understood the meaning of survivorship and taught me that in many ways. I will lift their banners high and carry them in their honor this month of celebrating cancer survivorship. I don't feel in any way guilty about my own personal survivorship. I truly just miss my friends and our times together. I will continue the fight for them and so many others whose voices are no longer in the fight.

This month I celebrate the survivorship of all of the men of The Howling Place group, or as we call the 'Wolfpack'. I am excited to share the cancer journeys of Steven Barker, Melvin Fernandes, Jeff Bryant, and Jim Calhoun. Thank you all for your contributions to this month’s article.

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

Jeff Bryant

JEFF BRYANT

POINT PLEASANT BEACH, NEW JERSEY

OSTEOSARCOMA

My name is Jeff Bryant, I am 25 years old, and I am from Point Pleasant Beach, New Jersey. I was diagnosed with a bone cancer known as Osteosarcoma in my left femur and knee in June of 2014, shortly before my high school graduation. 

Before cancer, I was a competitive basketball player who won the New Jersey Group 1 state championship and the conference championship with my high school team. The moment I was diagnosed with my osteosarcoma, my playing career had to end as my leg would no longer be able to tolerate such heavy impact. I underwent chemotherapy for nine months, a femur and knee replacement, and two separate lung surgeries to remove nodules of cancer that spread there. I was declared cancer-free on St. Patrick’s Day of 2015. 

All of this occurred at Memorial Sloan Kettering in New York City, where I was given the best care from the greatest medical staff for this disease. While at Sloan, I attended Teen and Young Lounge, which provided opportunities for me to meet other patients my age. When I traveled back home, I volunteered as an assistant coach with my high school basketball team. Both activities made my  time going through chemo fun, and were  enjoyable distractions from the treatment cycle.

In the fall of 2015, I attended Flagler College in St. Augustine, Florida. However, I was only there for what would have been my freshman year for two months, and then all of a sudden my entire femur and knee got loose. It was the worst agony of my entire life. I returned home and had a second femur and knee replacement in January of 2016, with a custom made prosthesis. I returned to Flagler for all of my sophomore year, and then in August of 2017, the screws connected to my hip got loose and I had to get a third surgery done, which resulted in me missing that fall semester. I returned to college for the following spring and then in July of 2018, I had a fourth leg surgery due to the bottom stem of my prosthesis and knee loosening. This time, I just managed to return for the school year that year. 

During this time, I struggled not only physically, but also academically and socially. I had to manage my time between the college workload, rehab, and other college student responsibilities. Furthermore, I struggled making new friends because I could no longer get involved in most recreational activities. But I didn’t make excuses for myself, and by the end of my college career I made the dean's list four times. I finished PT in February of 2019 after four years, and graduated from Flagler in May 2020, but had to do so in quarantine due to Covid-19.

I am currently pursuing a master’s degree in museum studies at George Washington University in Washington, DC. In doing so, I hope to one day work for a history museum. My first year in the program had to be remote, also because of Covid-19, but I will be attending there in person starting this summer! One could say I got the “short end of the stick” with my college-related experiences and had my life delayed by a few years due the several setbacks created by my cancer. Despite having been unlucky in recent years, I believe that now I am finally making progress and moving forward with my life.

My cancer journey has taught me that everything plays out in life for a reason. Something may not work out the exact way you want it to, but in the end it more often ends up working out for the better. I did not end high school the way I would have expected. My college and graduate school years were nowhere near what I would have hoped for them to be. I also would have never imagined I would struggle to learn how to live like an adult because I constantly needed my family to help me get back to good health. 

In spite of these disappointments, I think I am starting to see what God has planned for me, and the future is to appear brighter for me. I also learned that any time you have an opportunity to share your story, take advantage of it. You never know what kind of other opportunities or connections you might be able to build from it. It was because of my willingness to share my story that I have been in several newspapers, the news, and a cardboard cutout for a local grocery store that donated to Sloan. 

As a result of having my journey publicized, a pediatric cancer organization called the Frances Foundation found me, and sent me to the 2015 Final Four, along with several New York Giant football games. I also started an Instagram blog, @beatbonecancer, to share my experience and knowledge of bone cancer, and guide others who are going through similar circumstances. Connecting with others through my blog led me to team with a fellow survivor and create a Facebook group known as Cozy Cancer Corner for Young Adults, which seeks to provide emotional and social support to young adult cancer patients, survivors, and caregivers. As much as I may wish some things turned out different, I am also grateful for all of the amazing things that have happened since my diagnosis.

Mel Fernandes

MEL FERNANDES

STAGE III COLORECTAL CANCER

Hi pack, I’m one of the many guys here that is part of the CRC sub-pack Howl! In September of 2016, my brother and I travelled to Chaska, MN to attend the Ryder cup match. We were hoping to see the USA whip up on the Euros! It was during this trip that my brother, who is a GI doctor and lives in Dallas asked me “What was going on with me?” I had been losing some weight in the months leading up to that trip and thought that my efforts at eating better and exercising more were paying off! My bro had a different take! He thought that I had actively lost my appetite and looked anemic. He strongly urged me to get a colonoscopy when I got home to Cleveland. I had been walking the golf course carrying my golf bag and was active that whole summer prior and thought my bro was overreacting a little as I had no real symptoms.  

On my return home I went and saw my GP and told him what my brother had discussed. He ordered some tests and found that I did in fact have a haemoglobin level of around 6 (normal male of that age should be closer to 14) they were still dragging their feet a little when it came to getting my scope scheduled, citing my age (42 at the time). My brother finally urged me to just go down to Texas and he would get one of his partners to do it. So on November 17 of 2016, I found myself in Dallas Getting scoped. They found the mass immediately and I found out That I had cancer!  Before I knew it, in fact, later that same day, I was figuring out my next steps. I decided to go get treated in Dallas as my brother knew all the people down there.

Soon after Thanksgiving that year, I packed some stuff and moved into my brother's house. I found out that I was stage IIIC. I did six weeks of radiation paired with Xeloda before coming home to Cleveland in late January to rest up before surgery. So in March I was back in Dallas and while getting some more scans, found out that they were concerned that the tumor had been pushing up against my bladder. It was then decided that I would get a total pelvic exenteration (TPE) in which they would remove my rectum, sigmoid colon and bladder. So on March 20, 2017 I woke up in the recovery room at UT Southwestern  lighter one 6cm tumor and with two Ostomies, a permanent colostomy and a Urostomy since I no longer had a bladder!! Not overlooking a brand new Barbie butt.

After I recovered  from the TPE, I started on six months of cleanup chemo, in which I had the FOLFOX through Nov of 17 all the while getting used to this new Ostomy life! I moved back to Cleveland in early 18 and tried my best to try to get back to a new  normal. Since then, I’ve had radiation on some small spots on my lungs and have had two liver resections in two years. I am thankful to have had a great support system through this whole journey. I’ve adapted to dealing with the ostomies and am proud to say that they haven’t prevented me from living my life to the fullest! I was fortunate to serve as an ambassador for FightCRC in 2020 and continue to be involved with advocacy work so that others heed the importance of screening. Four years along this journey I am thankful to be able to share and help others along the way

Steven Barker

STEVEN BARKER

BARTLETT, TENNESSEE

DIFFUSE LARGE B CELL LYMPHOMA, STAGE 3

I spent the first nine months of 2019 simply trying to find a doctor that would hear my concerns and consider my symptoms may be more severe than “most guys my age.”

In January 2019, after seeing my primary care about some abdominal pain, he ordered a CT which showed nothing so the only explanation (according to him) would be hernias. He referred me to a general surgeon because he was out of ideas, and the surgeon found two baby hernias that I didn’t even know existed. They were inguinal hernias and located much lower than where I was actually feeling the pain. In February 2019, I had these repaired, and two weeks later I began to feel the pain again and it was much stronger. Assuming I was out of options, I began seeing a physical therapist, specializing in pelvic health. It improved other areas of my body, but the pain remained. In March 2019, I attempted to donate blood but I was turned away due to low iron. If you are a male, of any age, low iron is not okay and should not be ignored by doctors.  

Hopelessly, I powered through the summer as the pain grew. At this point, while continuing to see the physical therapist, I began to consider a more holistic approach to improving the pain with diet and exercise. I began to lose weight very quickly but the pain just got worse. I called a GI doctor in July and I had to wait several weeks to be seen, but felt like this was my only option. I also decided at this time that I should change primary care since my original PCP could not do anything more for me.  I researched and found the best PCP in the Memphis, TN area.  Many refer to him as the “Doctor of Doctors.” Due to his high demand, the soonest they could see me was October 1, 2019.  

I saw the GI doctor in early September and explained everything, including that I was turned away for a blood donation due to having low iron. He says “You’re young and in fairly good shape, so it’s likely just the bowels were back up. Go to Kroger, find some Magnesium Citrate, gulp it down, and you should feel much better. Give it a week”. That day, he didn’t check my iron. He didn’t check for blood in my stool. He spent 90 seconds pressing on my stomach and couldn’t feel anything, so he sent me home.  

The Magnesium Citrate did nothing to me except give me diarrhea. I still had the pain. I called a few days later and requested a colonoscopy. He brought me in for blood work prior to the procedure, but still didn’t bother to check my iron. He finds and removes two polyps in the colon and tells me to follow up in five weeks. If I am still experiencing pain, we could possibly consider an endoscopy.  

Completely fed up, and not yet established with my new PCP, I dropped by my old PCP’s office and asked that they run a CBC. My old doc had no idea I was even there. He called me the next day, confused and concerned. “Steven, what’s going on?  Why did you get labs? Your Hematocrit is 24. It should be in the 40-60 range. You are bleeding, man.” I said “Yes, that’s why I got labs”. He referred me to a hematologist, who couldn’t see me for 5 more weeks. I’m literally dying at this point.

Excited. And dying. I will see my new PCP on October 1, 2020. I tell him everything. He couldn’t believe I had a GI consult and they didn’t check for blood in my stool. He tested my stool that day and it detected blood and they also drew labs. This was a Tuesday. He called me Friday and said my Hematocrit had dropped even further to 21. “You are at 21 now. Come in immediately, we will order lab results. If it’s lower than 20, you will need to go to the ER tonight and get a blood transfusion if you want to make it through the weekend”.  It has dropped to 19 since Tuesday (3 days). To the ER, I go. I got two units of blood and a CT which “showed concerns” so I would need an endoscopy on Monday.  

The worthless GI doctor from before came and met me, on a Saturday, first thing in the morning. He was nervous. The other doctors at the hospital were asking his name because they couldn’t believe he didn’t catch this. I basically told him to get out of my room and we were done. On Monday, I woke up from the endoscopy and the (new, different) GI doctor told me he was confident it was lymphoma but we couldn’t confirm until the pathology was complete. It was found in my Duodenum, which is the very beginning of the small intestine. They gave me another unit of blood, sent me home, and said the West Cancer Center would be reaching out to me to begin treatment.  

During my first oncology appointment, my doctor told me we would get a PET scan in a few weeks, properly stage me, and then begin treatment. That’s probably fair for many, but I pushed back and said I won’t make it until then. I am in too much pain. He said “In that case, let’s skip the PET. I want you to go to the ER now. They will give you more blood and then you can begin treatment next week”.

Here’s the kicker, after my first round of R-CHOP chemo, my abdominal pain completely disappeared within 24 hours and has never returned, even two years later. I felt better than I had felt in a really long time. Ten days after my first round, I began vomiting once per day, every evening. I went to the clinic every day that following week (M-F), and every day I would get fluids and try a different nausea medication (Zofran on Monday, Compazine on Tuesday, Phenergan on Wednesday, and Olanzapine on Thursday). When I returned Friday, they finally said to go to the ER. They performed a CT and found a bowel obstruction where my cancer was. Fortunately, my cancer was dying, but it was creating scar tissue which created this obstruction. I could no longer eat or drink and had to have an NG tube which immediately pulled over 2,000 CCs of bile off my stomach. My stomach was gigantic. I continued chemotherapy, received fluids and TPN (IV nutrition) to avoid malnourishment. I began eating “full liquids” and they sent me home.  

Over the next few weeks, the obstruction completely closed, and to this day, has yet to reopen.  I received a Small Bowel By-Pass surgery in December 2019, which basically reconnected a lower portion of my small intestine directly to my stomach creating a new pathway for food to exit. I also had a peg tube placed in my abdomen going directly to my stomach.  I began a tube feed regimen to nourish myself throughout the remainder of my treatment.  I completed treatment in April 2020, coupled with a clear PET scan and have been NED (No Evidence of Disease) since then.  All in time for the world to shut down due to COVID-19.

The struggle is still very real. My blood counts have yet to return to normal and I am indefinitely immunocompromised. I have no idea if or when my blood counts will even return to normal levels. That said, I’ve never been happier to be alive and have the beautiful family and life that I do. The Howling Place has given me so much purpose in my post-treatment journey and I will always be a member of The Pack. I have plenty of work ahead of me in the advocacy space and I am thankful to be alive.

Jim Calhoun

JIM CALHOUN

SARATOGA SPRINGS, NEW YORK

ACUTE LYMPHOBLASTIC LEUKEMIA

In September 2017, I was diagnosed with Acute Lymphoblastic Leukemia (ALL). A few weeks prior to my diagnosis, I lost my dad. I was away in New Jersey with my in-laws for the long Labor Day weekend. I fell asleep early and woke up in the evening, hitting my head on a granite countertop, causing a black eye and me to pass out. When I went to the hospital, the doctors told me I had blood cancer and would be admitted for treatment ASAP. They also told me that I would need a life-saving bone marrow transplant. 

I underwent weeks of chemo and treatments because of complications. By December 2017, they found an unrelated donor. I visited Dana Farber to start the process, and in February 2018, I  received a bone marrow transplant (BMT). After my BMT, I made weekly visits from Albany to Boston for check-ups.

In 2019, I connected with my donor, who happened to be a few states away, and we became an instant family. I feel blessed that my donor not only gave me a second chance at life but is now part of my family. We formed such a bond. He signed with the New Orleans Saints this year, and I am looking forward to watching him play in the NFL.

I still have treatments for immune thrombocytopenia (ITP), where my platelets can't seem to go up without getting a weekly shot. But, I am incredibly blessed to be here today to spend quality time with my wife and my kids and my pup, Bailey. So, for now, I do whatever it takes to give back to the community through blood drives and help motivate others who face this horrible disease. I'm happy that I'm getting back to being me and just getting back to work!

#CALHOUNSTRONG