I first met Jeff Iredell a little over a year ago. A fellow lymphoma survivor, though he had non-Hodgkin’s and I had Hodgkin’s, lymphoma is lymphoma as far as we are concerned. He was holding a special recognition that evening, and a local golf course was honoring those who had battled lymphoma by lighting up their property in green, the “recognized” symbolic color for lymphoma.
To me, Jeff is a perfect example of someone whose life was so impacted by his illness, that he wanted to make a difference in the fight for others. As he will explain in his story, he works with the Lymphoma Research Foundation, something that as a fellow survivor, I appreciate all help we can get with a cancer that gets very little recognition or support for a cure. I have enjoyed watching Jeff recover from his lymphoma over the years when I first discovered him on a Lymphoma Facebook page.
I asked Jeff to tell his story on “Paul’s Heart.
“It was just after Labor Day in 2011, September 9th to be exact. I had been divorced for about 2 ½ years at that point and just starting to get out of my funk and get back to living life. I hadn’t realized how co-dependant I had become and was pretty unhappy with life. Then the moment that would change my life forever happened.
Long story short, I had developed a blood clot in my lung, the CT scan also showed an enlarged spleen and enlarged lymph nodes. The doctors ordered a biopsy, PET/CT, etc. and then the cancer bomb hit. The doctor performing the CVIR biopsy said, “Usually when I go in to get this, it’s a form of lymphoma”. Like many others, unless you have had it or know someone with it, you probably didn’t know what that is or that it’s even a form of cancer. So of course I drove myself crazy once I got back to my room looking up everything I could find. My first piece of advice-avoid random sources, stick with a renowned sources, there is a mountain of misinformation out there.
When the oncologist sat me down to tell me the type, treatment options, statistics, all of it, I took it all in like sponge. I was diagnosed with Stage 4b Diffuse Large B-Cell non-Hodgkin Lymphoma (DLBC-NHL). DLBC is the most common form of NHL in adults and I was on the lower end of the age scale for this particular form. Lymphoma is a blood cancer that causes abnormally fast growth in the lymphocytes (white blood cells) and typically appears in lymph nodes, bone marrow, the spleen and sometimes other organs. My particular staging indicated I had tumors both above and below the diaphragm and at least two other body systems, in my case, my bone marrow and spleen. I also had tumors on the humerus on my left arm and on one of my vertebrae.
I remember this moment, the day my attitude on life change for good, as if it was yesterday. He asked, “Are you okay? It’s a lot of stuff I just threw at you, I know it seems overwhelming, but….” I stopped him in his tracks and replied, “I’m great, forget how we got here, what are we gonna do to kick it’s ass in time for golf season?” He chuckled, shook his head and away we went I never had that “woe is me” moment and reflecting back, that was soooooo not the old me.
Treatment called for 8 rounds of R-CHOP chemotherapy (one every 3 weeks) and 4 rounds intrathecal chemotherapy. Intrathecal is simply a spinal tap where the fluid that is removed is replaced with a small dose of chemo. Traditional chemo cannot pass through what is called the ‘blood-brain barrier’. It’s our body’s natural defense to keep bad things out of the cranial and spinal fluid. Mine was done as a precaution with the tumor on my spine.
Forget what you have seen in movies regarding chemo. Long gone are the days of sitting on a bathroom floor and being sick with nausea all day. The anti-nausea meds have come a long way as have the treatments themselves in being less toxic. I got ill exactly one time and that was on my way home from the pharmacy picking up those same meds because I forgot to refill earlier. That doesn’t mean there aren’t side effects. The fatigue is extreme. I did find that walking on a treadmill for just 30-45 minutes a day did help with that. Then there was the constipation/diarrhea conundrum, you were never sure which was going to rule this treatment cycle. The worst was the Prednisone. You may have taken for allergies or skin irritations, but I was taking 6 times that amount daily for 5 days each cycle. It has healing properties, but is mostly in the mix to help appetite and keep energy levels up. The mood swings, sleeplessness, hot flashes, it was the worst.
All that being said, I weathered the storm pretty darn well. I think much of it was because of positive attitude and really getting involved in the lymphoma community. It was in November of 2011, I connected with another remarkable lymphoma warrior, Megan. We “met” on our lymphoma support board on Facebook. We only live 30 minutes from each other and despite having different forms and being separated by 20 years of age, we became quick friends. We discussed everything regarding our treatments, the gross details we all want to discuss with someone, but may not have that person around to understand what we are going through. This was the beginning of me networking with other lymphoma warriors. They became my new family or as I now refer to them, “lymphamily”. I came to know many of them better than some of my closest friends despite never meeting them in person.
I realized that for the first time in many, many years, despite battling lymphoma, I was happy. I had a whole new group of friends, ones who didn’t care what you looked like, what you could do for them, what your job was, any of the usual drama. All we cared about was trying to help each other cope, lend support, and get each other back to being healthy again. The support I try to give on a daily basis is fulfilling beyond reason. Then there are some big moments that I receive far more than I give, although my counterparts may argue the same in their favor.
On July 1st, 2012, Megan and I finally met in person at our Lymphomathon team fund raiser. Certainly this was a moment of joy as we had both just finished treatment 2 months earlier. The next day Megan found out she already had a recurrence of her Hodgkin’. She still had a long battle still ahead, yet by the end of the day we had filmed a spot for her now famous video and went to dinner. Despite the news earlier in the day, at that moment in time, we were happy. In September, one year after my diagnosis, we walked together at Lymphomathon (A 5K walk in support of the Lymphoma Research Foundation or LRF), in lock step with other warriors, several of whom recognized Megan from the video. And I was happy.
In December of 2012 another fellow warrior from the lymphoma board, Tina, travelled down from New Brunswick, Canada. I flew into Providence to meet her and together we were off to surprise another warrior living in the Boston area, Erica, to lend support as she was heading towards her stem cell transplant. None of us had ever met, but you would have never know it if you saw us together. And we were happy.
In February of 2013, I went to a meet and greet held by the local chapter of LRF. At that time, I agreed to be on the 2013 walk committee, 5 months later, I was chapter co-president. Fast forward to today and I am on the regional council, helping wherever I can. It’s very rewarding volunteer work, although I would classify it as a labor of love.
Here we are, it’s November of 2014, and I have an awesome lymphamily, some still battling as I type this and the group grows all the time. I am only 2 1/2 years in remission with the specter of a possible recurrence one day still fresh in my head. I am still paying off medical bills on a payment plan, my meager life savings spent on treatments. Most of my life has found its ‘new normal’. I do what I want, when I want, no putting it off until tomorrow. My doctor visits are getting further and further apart. And I am happy.
My last piece of advice- don’t rush back into life, you need to listen to your body and work it back in slowly.
The support bracelets I bought right after diagnosis are inscribed with “No One Fights Alone”. To me, it’s not just a saying, it’s a way of life. I feel it’s whom I was meant to be and what I was meant to do. I have taken far more from lymphoma than lymphoma has ever taken from me. I don’t sweat the little things anymore. I stop to smell the flowers, admire the sunsets, and I stop to feel the rain pound on my face. I still have a dislike for shoveling snow, but hey, that falls under the “little things” category.
One day, a cure will be found for lymphoma, but until that time, I have lymphoma, and I’m happy.”