Name: Scott L.
Age: 46
Occupation: Photographer
Date of diagnosis: June 2014
Type of diagnosis: Nodular Sclerosis Hodgkins Lymphoma, Stage 1B
Date of last treatment: Chemotherapy, Sept. 22 2014. Radiation, Nov. 24, 2014
What events lead up to your diagnosis, or, how did you discover what you were suffering from was cancer?
I had trouble swallowing that slowly got worse over Jan and Feb 2014. I pursued the issue with a gastroenterologist. During an upper GI scope, he discovered that my esophagus was about 95% closed. I went for a CT scan which showed a mediastinal mass between my esophagus and thorax that was pushing the esophagus closed. After a tissue sample removed via a mediastinoscopy failed to yield a result, a VATS was performed to remove an inflamed lymph node on the same branch as the mass. The pathology on the lymph node was also inconclusive but ruling out all other options, a diagnosis of Hodgkins was determined. In the time frame of these surgeries, Stage B symptoms of night sweats also began.
What were your main concerns after being diagnosed?
Knowing that Hodgkins is so “easily” cured there was a sense of relief but also with that came what I would imagine to be or what felt like a reasonable amount of anxiety/concern over what the chemo experience would be like. How sick would I be? What would being sick from chemo feel like? Is it comparable to other experiences I’ve had with being sick from a cold or stomach virus? How would being sick for those months affect my kids? What were the long term concerns on the impact of the chemo and likely radiation treatments?
How did your family react to the news?
Generally with relief. I think they were all also happy to know I had a disease with such a high response to treatment and was at literally the best institution for it.
Hope did you cope emotionally?
I think fairly well. I had great support from family and friends as well as friends in the medical field who helped guide and advise me throughout. I’ve been done with treatment for just more than six months so it’s still a process. I’ve been told I was short tempered during chemo and rather unaware of the impact of my moods. My memory of that time is a bit shaky so I have to trust what I’ve been told and I would imagine that that was a combination of the impact of the chemo as well as my own emotional state.
What is the underlying message or takeaway you learned from your experience with cancer?
I think that the experience of cancer is not well understood until you’re in it. I’m not sure I would expect the world to understand this if they’re not forced to be put through it. However, once crossing that line into the cancer experience, I think there could be more engagement for the patient and their family to have a database of narratives to help guide you in understanding what you’re in for. Not just any random set of stories, but a curated and focused and almost official point of view from patients. Brutal honesty, not points on the extremes of wild success and ease or failure and misery is essential. It’s too easy to discover how things can end up going horribly bad and finding the 1% cases. I’d rather hear about what this experience was going to be like from a Hodgkins patient than a doctor. Frankly, the doctors never see you when you’re sick.
How important was your relationship with your nurse/caregiver?
I had a variety of nurses visiting at home for wound care but other than that the nurse relationship wasn’t too significant. I mostly interacting with my oncologist and then my wife as the primary caregiver at home. Can’t overstate the importance of her role. I think the role of the family caregiver is disregarded by the medical community with little to no attention being paid to that. Immediate family members serving in a caregiving role in this experience should be understood by the oncology team as part of their patient care protocol at some level.
As a survivor, what are your thoughts about current support and resources available for survivors?
Learning that the psychological and emotional impact of a cancer experience can spike after treatment, I think an engaged dialogue with the oncology team about the importance of mental health therapy as an essential part of the process should not be overlooked. It never came up and something to consider but from my own initiative I sought therapy. I’ve never gone through therapy before so it’s not like it was a natural part of my general health care. But I saw the need and decided I should do something about it. It concerns me that many others likely never seek treatment and suffer as do their families. The illusion that once the cancer is treated you can return to your life without any transitional process is naive.
How long were you in treatment? What helped keep your spirits up and gave you support during this period?
I was in chemo for four months, off for a month, then a month of radiation of 5 days a week for 3.5 weeks. Having a committed family and friends who helped us. Knowing that I just had to get through the treatment and I’d be “fine.” I felt very lucky to have the easily treated disease I did and to be treated at the finest institution in the country for that disease.
What was your first reaction when you were told that you had cancer?
In my case, it was a bit of relief. We’d been struggling for 6 weeks to figure out what was wrong. It’d been suspicious for Hodgkins from the first needle biopsy so I’d been clinging to the hope that that’s what it was since we knew it was easily treatable. The first time I heard that it looked like Hodgkins I had just come out of a procedure so I was still slightly under the affects of anesthesia so my reacted was subdued. Throughout this miserable process of struggling to reach a diagnosis I went through a range of emotions including fear, sadness, anxiety and in some ways relief. I was probably mad for a brief bit but got over that quickly. I might have drawn a short straw but there are shorter straws and sometimes there’s no straw. It was hard to feel too much self- pity considering my circumstances.
The first emotion when finished with active treatment?
Quiet relief and some fear of leaving the “protection” of the medical team and being back out in the space with unknowns about my health like I was before cancer.
How did you find the strength to go through the treatments?
What choice did I have? It’s not like I had to look for the strength like it was just lost under the couch. Strength to me was a matter of values of what gives my life it’s meaning. It’s not like I had a choice to do this or not. This was just what simply had to be done. I don’t think it’d be accurate to say that this experience required strength. Maturity and patience, yes. I think here strength is a byproduct of what happens to you as you go through this. Knowing that I could do it and get through it and knowing that the way I went through this set a tone for those who were helping me and my family gave me a set of values to aspire to and a perspective on how to conduct myself in this experience. I was imperfect to be certain but it was a humbling experience from which I’m still learning.
What did friends or family members do or say that meant the most to you?
The simple things like providing meals or taking our kids for play dates or when our schedule didn’t allow for us to keep our regular routine. Can’t overstate their importance.
What was your motivation?
Living.
Did you learn anything new while you were in the hospital?
That the medical world needs to be humanized more and less concerned with scientific minutiae when interacting with patients. This does not apply to my oncologist personally but rather the sum total of what I experienced throughout. The linguistics that the medical world uses is often confusing, insensitive if not just simply using words whose meaning has no actual relation to the circumstances being described.
Does their cancer center have a survivorship program?
I have no idea if there’s a survivorship program.
