We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient who has asked to remain anonymous.
“I hate to be the one to tell you this, but you have invasive bladder cancer.”
That’s certainly the last thing anyone wants to hear from their doctor. And it’s undoubtedly news that doctors must dread having to tell their patients.
I owe a debt of gratitude I can never fully repay to all of those whose healing hands, both literally and figuratively, reached out to help me
I heard those fateful words from my urologist in August 2012, at which time I was informed that my best course of action was to undergo chemotherapy treatments and have my bladder completely removed. Oh yeah, my prostate had to go as well. “You’ve got to be kidding me,” I thought. “I’m 46, healthy, and serious health issues aren't supposed to happen until I’m old - like 70 or something."
So began my journey of cancer treatment, which included three rounds of neoadjuvant chemotherapy and culminated in the removal of my bladder and prostate. Like many who have to get on the roller-coaster ride that is cancer treatment, my road to recovery was rocky at times.
During a bladder biopsy and resection procedure, the doctor determined that the tumor in my bladder was blocking my right ureter, putting the kidney at serious risk. I was rushed to surgery where I received a nephrostomy stent. Two weeks later, a port-a-cath (for administering the chemo infusions) was placed in my chest; and three days after that, it had to be removed due to an infection. Then came the chemo, which was certainly no picnic - I suffered from a variety of side-effects, not the least which was becoming seriously neutropenic. Later, following surgery, my heart went into A-fib and I was whisked off to intensive care.
One of the ironies of my experience: Prior to the cancer diagnosis, I had never even spent a night in the hospital.
As most anyone who has gone through this experience can attest, it really kicks your ass physically, emotionally, spiritually, existentially, and about every which way in between. The good news today, though, is that I’m cancer free and my prognosis for long term survival is very good. I feel better physically than I’ve felt since this whole circus started, and I’ve resumed most of the activities I previously enjoyed before the cancer diagnosis. Nonetheless, healing emotionally from the trauma of the whole experience - including life with a urostomy - is still a work in progress.
Recently, I’ve been reflecting at depth on my journey with the Big C. During my treatment I interacted with an untold number of health professionals. From doctors and nurses to social workers and massage therapists, scores of health-care professionals and related practitioners were involved in helping me get better. I am in utter awe when I think about the years of training that each of these individuals received; the fortitude it must take to deal with the sick and infirm on a daily basis; the medical research behind the development of lifesaving chemo treatments; and surgical procedures like the cystoprostatectomy.
I owe a debt of gratitude I can never fully repay to all of those whose healing hands, both literally and figuratively, reached out to help me. Like my feisty little 70 year-old home health-care nurse Jackie, who told me, “During chemo, you’ve got to keep moving! Get out there and walk every day, stay active. You won’t feel like doing it, but do it anyway!” I followed her sage advice and sure enough, it really did help. Jackie also coaxed me through a very rough time after the removal of my port-a-cath when I was told I would need to stuff gauze in my gaping open chest wound on a daily basis. Jackie was right there, providing me with the encouragement and support that enabled me to get this done.
Then there were the various residents and fellows who provided for my care. The competency and kind bedside manner of the chief resident in urology helped me calm down and enabled me to wrap my head around what I was facing when I was first diagnosed. The expertise, professionalism, and compassion exhibited by the fellows who were involved in my surgery and subsequent care in the hospital were also appreciated.
And let’s not forget the attending physicians, whose years of education, training, and experience enabled them to do things that 100 years ago would be considered no less than an absolute miracle.
To all those in the health-care field who touched my life during this journey, my unending gratitude. To those who are answering the call to provide professional medical care for others, my sincerest respect.
The author of this article lives in Virginia and works in administration at a large hospital.
