Written and Contributed
by Seth Bruhn
Hello, my name is Seth Bruhn, and I am a cancer survivor. In April of 2010 I was diagnosed with Mantle Cell Lymphoma. Mantle Cell Lymphoma(MCL) is a type of non-hodgkins lymphoma(NHL). MCL is the rarest form of NHL , constituting only 6% of all NHL cases(only around 15,000 patients presently in the U.S.).
MCL is an aggressive form of lymphoma that attacks the lymph nodes, blood, bone marrow, spleen, and GI tract; among others. The causes of this disease are still unknown. MCL is rarely curable, and no set treatment regimen is used due to the aggressive nature and unpredictability of the disease. However, in recent years, clinical trials and research along with the advent of the bone marrow and stem cell transplants have advanced the treatments tremendously and raised the overall median survival rates in MCL patients.
My story begins about 9 months prior to my diagnosis. In August of 2009 my wife Kellie and I had learned that we were expecting our first child together. This was the greatest news I could receive, especially since just one year prior we suffered the devastating loss of a child with a miscarriage. We were truly blessed with another shot at life’s miracle.
With about two months left until the new arrival I began to feel sick, tired, and just plain run down. I attributed all of this to frantically working countless extra hours on the home remodeling to get the girls' room ready for the new baby. I had several doctor appointments in which I was treated for sinus and respiratory infections.
Over the next few months it progressively got worse to the point I wound up in the emergency room. The doctor once again tried to diagnose me with a sinus infection. At this point I had had enough! I emphatically told him I thought there may be something seriously wrong with me. We demanded that some type of blood work be done. He came back about an hour later and informed me that I had low blood platelet levels.
He set me up with an appointment with a hematologist in Springfield for the following month. Meanwhile we welcomed our new bundle of joy, Scarlet Rose Bruhn, into the world on April 9th 2010.…”the happiest day of my life!”…..only to be followed 2 weeks later on April 22nd 2010 by the worst day of my life.
On April 22nd 2010 I went to my hematologist appointment in Springfield. Ironically the days leading up to this appointment I had been feeling great so I really was not worried at all. The doctor came back into the room with a look of concern after the initial blood tests results came back. He seemed even more concerned as he inquired about a few other symptoms: shortness of breath, petechiae bruising, and worst of all night sweats….I had them all!
He then told me we had a serious situation on our hands because along with those symptoms, my platelets had hit a critical low. I had just under 3,000 per microliter(a normal range is between 150,000-400,000 per microliter for a normal healthy person), which means even the smallest of blood loss could have quickly resulted in death. He said he could not let me go home like that, and he was going to admit me to the hospital immediately.
After I got checked into the hospital, I still did not know exactly what this all meant. It struck me as odd that we were placed on the oncology floor. At this point I still didn’t know yet, and I thought I was going to be going home that night (after all we had to pick up the kids from the sitter, and I had to work the next day).
A short time later, the doctor came back and finally broke the news to me that he thought I may have mantle cell lymphoma, but would not know for certain until they ran some additional tests. The next few minutes upon hearing that were a total blur. My mind went blank, my body went numb, and my head began to spin with scared thoughts!…….CANCER?……Why me?…..Why now?…How could this happen?…..What about work? Money? Medical bills?…..Am I going to die?…..My children?
As you can see when you are presented with news of this magnitude your mind starts racing 100 mph in a million different directions. Suddenly we found ourselves in a terrible situation. Aside from a health standpoint, we had just had a new baby two weeks prior, and with my wife on an extended maternity leave and me unable to work, we had absolutely zero income coming in for the foreseeable future and panic was setting in……
I spent the next 8 days in the hospital getting about every test imaginable ran on me. On one of the last days I was there the final pathology report came back positive for MCL, and I narrowly (by <1 cm) missed needing to get my enlarged spleen removed. I went for my first “pre” chemo treatment of Rituximab that next week at the Springfield Clinic.
I remember just sitting there with my wife and nearly one month old baby….just sitting there all alone in the corner of the treatment room not wanting to associate with any of the other patients at that time. As I sat there staring out that giant wall of windows I just wanted to be alone feeling sorry for myself. I thought my life was over!
The doctor in Springfield informed me that they had no more treatment options to offer there, so he was going to refer my case to Siteman Cancer Center in St. Louis, where I was going to be part of clinical trial study for the remainder of my treatment. I was a little hesitant knowing I would be essentially a “test subject” for an unproven treatment.
I had no other choice, so I reluctantly accepted and met with my new team of doctors. They explained every detail of the study and provided me with solid evidence to back their findings which put my mind at ease. My chemo regimen was to consist of 4 inpatient treatments lasting approximately 6-8 days each. Then there would be a fifth treatment lasting 30-45 days during in which I would receive my stem cell transplant.
The transplant we decided would be best for me at this time was called an Autologous Transplant. This is where they would harvest healthy stem cells from my own body while my blood counts were at there highest and re-inject them into my blood when my count are at there lowest. We elected to save the allogenic transplant (donor transplant) in case the first transplant failed or to use after initial remission phase.
The first two treatments were not as bad as I had anticipated from a physical standpoint. The mental pain was the worst part. As I mentioned earlier, I had just had a newborn baby a couple months prior, also I had a concerned 6 year old step daughter Quincy (my biggest cheerleader and supporter) who did not really fully understand at her young age. Although they were allowed in the room to visit, I was unable to make any physical contact with them while I was hooked up to the chemo.
Anyone who has children knows how hard it would be to see your children and not be able to so much as hug them, let alone hold your newborn baby. Its mentally agonizing! After the second treatment I lost all my hair over my entire body, also due to the constant intake of chemo and other fluids I had gained over 40 lbs from the time I had started my treatment.
Additionally at that time I had my tri-fusion catheter placed in my right side neck/chest area. This catheter would be used for the remainder of my chemo fluids and also to collect/receive my stem cells for transplant. Shortly after the next round of chemotherapy, I developed an awful staph infection in and around the catheter. The pain was comparable to a temporary paralysis on my entire right side. My temperature spiked at 105 degrees for about 48 hours.
I had to spend an additional 10 unexpected days in the hospital until the infection cleared up and my blood counts recovered. They had to remove the catheter because the infection was so severe that the infection had spread to the inside of the tubes. This was the Most Miserable point of my entire cancer process. This is were I came closest to giving up. I honestly thought I wasn’t going to make it out of the hospital that time, but I had way too much to fight for!
After I was released from the hospital, I was placed in the care of a home health nurse for the next month or so. I had to give myself injections three times daily of a strong antibiotic. Eventually, I was well enough to have the catheter replaced and have my stem cells harvested. The fourth cycle started a couple days later. This was an intense week of very strong chemotherapy aimed at breaking my blood cells down to their weakest point prior to replacing them with my “healthy” cells that were harvested days prior. I was hooked up to this chemo for 128 consecutive hours. The pain and agony was nearly unbearable.
Finally, the time had arrived for the transplant and my long hospital stay. I was nervous to say the least because I had no idea what to expect from this type of procedure. On September 16th 2010, I had the transplant procedure that ultimately saved my life (they were nice enough to push it back one day since the 15th was my 30th birthday. Happy birthday to me right?!?!). The transplant that they had spent months preparing my body for had literally taken all of 12 seconds to perform.
However, this may have been the most important 12 seconds of my life because within that time frame they were able to put my cancer in remission. I spent the next 22 days in the hospital in order to monitor my body to make sure it was responding correctly.
The doctors were amazed how quickly my counts recovered and how quickly my body recovered that I was actually able to be released 5 days ahead of schedule. After the transplant I still had to go back often for blood work and “maintenance” chemo injections, but the long hospital stays were over finally and the cancer was officially in REMISSION!!!
After a few months I had made a full recovery and was starting to feel like my old self again. I was able to go back to work in April of 2011 and transition back into my normal routine. On June 4th 2012 I reached another important milestone. On that day I received my final dose of chemotherapy and was released from the oncology department at Siteman back to the care of my regular family physician.
After two long years my journey had come to an end for the time being. Every treatment facility has a bell that you ring after your last chemo treatment. I had to walk past it every time, hoping that someday it would be my turn to ring that bell. Well that was my day, and on that day I rang that bell so loud and proud (pictured below). It immediately brought tears to our eyes the moment I touched it. Truly it was one of my proudest moments in life knowing that I had taken on the mighty cancer, and I WON!!!
I definitely could not have won this battle alone. I had a wonderful support system of family, friends, and community behind me. Either my loving wife or my mom (who lives in Miami) were right by my side in the hospital every step of the way. I can't thank the people who helped me enough….THANK YOU EVERYONE!!!!
Earlier, I touched on the financial strife of the situation, and that is why I am a huge supporter of the organizations that go out of their way to help those in need. Organizations such as Fight the Fight, Miles for Michael, Team Tammy, and The Leukemia and Lymphoma Society. Without such groups some people simply would not make it financially. Not only are the costs of medical bills and medication sometimes insurmountable, it is the small costs that people generally don’t factor in that add up quickly such as gas, food, lodging, extra daycare, and other miscellaneous expenses.
Luckily for me we were given a fundraiser that my daughter Quincy’s girl scout troop put together. It was a small kiddy carnival that turned into a tremendous outpouring of support from the community. The generosity of some people was overwhelming and very heart felt. To this day we are eternally grateful to all those involved because without this we would not have made it financially.
I urge people in similar situations to take advantage of every possible resource available whether it be a charitable donation or other assistance such as government funded programs such as Medicaid, Social Security, or Link to name a few. Don’t be to too proud to ask for help!!!
I have learned that life is precious, but also that happiness can be snatched away from you in a moments notice. So don’t be afraid to take risks, live life to the fullest, laugh often, appreciate the things and people that you have in your life, take nothing or no one for granted, and always think positive.
As for me, I know that one day down the road I will have to go through this again, but I'll deal with that when the time comes. As for right now I am just focused on living a more happy and healthy life and about enjoying and celebrating life rather than living in fear of what the future holds. Last month I was fortunate enough to be able to celebrate life with some amazing people all of which who have gone through the same things at the Siteman Cancer Center 19th annual blood and bone marrow transplant celebration.
One speaker in particular really stuck with me…he said “I used to think I needed to live life like there was no tomorrow, but now I like to live life knowing that there IS a tomorrow…because if you’re a cancer survivor you know how important tomorrow is!”
Just like another cancer survivor said after he won his battle…
”No more bad days
only good days
and great days”
Thank you for reading and thank you for caring!
Thank you for reading and supporting Fight the Fight. We would greatly appreciate it if you took a second to share Seth's Story with your friends by clicking one of the buttons below.
Share this post