Things to Remember if You’re Diagnosed with Cancer

My Doctors Office

Replying to emails

I get a good amount of email from this site. A lot of it is people asking questions about signing up or hosting a drive, which I’m more than happy to answer or redirect as necessary, but some of it is more personal. From a parent of a child diagnosed with cancer, or someone who has previously lost someone dear to them in the past. These are the emails that make me pause in front of my computer, searching for the right words to affirm, or comfort, or explain.

I’m not an authority on this stuff by any means. I do my best to provide as factual information as possible, but I’m not formally trained in medicine, psychology or counseling. I’m only an authority on my own experiences. I have lived this, and I believe that counts for something. And I know that experiencing the weight of a cancer diagnosis is something that can’t be taught in a classroom.

The timing of my diagnosis was interesting. I was 20 and halfway through college, which is arguably one of the most formative times in anyone’s life. I was old/mature enough to fully understand the reality of my circumstances, which may not be completely true for those who are diagnosed at a younger age. I signed my own medical forms, and by virtue of my age my parents were legally bystanders in my medical procedure. I wasn’t old enough to see my diagnosis through the lens of a spouse or family, which I’m sure creates an entirely different slew of thoughts and concerns in a patients’ head. I was toeing the line between adolescence and adulthood, somewhere between loving the independence of college and longing for the comfort of my mom’s home cooking. I was awake a lot of nights in the hospital, wondering about things like marriage, kids and careers. All of these things I assumed were just around the corner, only to then realize that the corner might not even exist.

I particularly enjoy emailing with patients who find themselves in similar circumstances: 20-something, semi-unbelieving that this is actually real, and full of questions/uncertainty about the future. I’ve had the opportunity to talk to a few newly diagnosed patients about their situations, and while I can’t fully explain how, I feel an automatic connection with these people that I’ve never even met before. When you’re diagnosed with cancer at any age, you join a pretty exclusive club. A club of people who can’t help but empathize with you on a level that others cannot, and in a way that neither of you can even express. It’s the unspoken acknowledgement that finally, someone understands. And when that connection is age-specific, it’s even stronger.

Some people have asked me if I have any tips for them before they undergo chemo. After thinking about it for a while and reflecting on my own experiences, it turns out I do. These are adapted from an email I previously sent out a couple months ago:

Things to remember if you’re diagnosed with cancer

Despite the fact that I’ve been in your shoes, I can’t speak authoritatively about much other than my own experiences. The journey you’re embarking on now for the next few years will be intensely personal and really change you, and make you think about things you’ve probably never really intensely thought about before. Really important things. Life, death, love, purpose, family, friends. I spent a lot of nights just staring at the ceiling, lost in my thoughts.

As far as tips and advice go, I’ve thought a lot about my time in the hospital, as it is by far the most transformative experience of my life so far. If I could go back in time and talk to myself in December 2006, I’d share the following:

  1. There’s nothing you can do but keep going. There was a point where I realized that my fate was pretty much out of my hands and into the hands of my doctors and God. And instead of being depressing, it was freeing. Life is precious and nobody (cancer or otherwise) is assured another day, so we are in control everyday about how we approach things. Whether we will feel defeated or press on. Your days will become very repetitive, especially when you become neutropenic. There were literally weeks when I didn’t leave my hospital room. It’s okay though. One day at a time. It’s all part of a bigger plan to get you the hell out of there, and that plan only works one day at a time.
  2. Your mental state is tied overwhelmingly to your physical state. This is related to #1. I’m not typically one of these motivational-speaker “mind over matter” types but my time being in the hospital taught me how true it is. Mind over matter. The days I felt sorry for myself were the worst physical days. Once I realized that I would just do what I was told and take it day by day, things were okay. You’re not in control, so what’s the point in worrying? And while it’d be incorrect for me to declare some sort of definitive causality between the two, I experienced minimal chemo side effects — no nausea at all. True story: a nurse walked into my hospital room one day to take vitals while I was reading a magazine and she said “Well well, you just look like a guy waiting for a bus!” Well yeah, except for the fact that I was sitting up, hooked to a chemo machine. Mind over matter.
  3. Tell people how much they mean to you. I had this ongoing beef with a few friends from my childhood for 3-4 years before I was diagnosed, but when they came to visit me in the hospital, the beef went out the window. We’re great now. We haven’t even brought up what the issues were because they’re non-issues now. Cancer will strip away the fat of your relationships and cut to the core of all of them, and it’s something to embrace. It’s the opportunity to tell everyone, those whom it may have been awkward to do so previously, how much they’ve meant to you and how much you love and appreciate them. There is no better time than now.
  4. Your family is more scared than you are and don’t know how to support you. Very strongly tied to #3. It’s much easier for you to come to terms with your diagnosis than it is for your family. You have the “luxury” of a predetermined schedule and some degree of inevitability to what the next few months of your life will be like, so your job is just to wake up every day and survive. Your family thinks it’s their job to comfort you as much as possible but they don’t know how. They can’t relate to what you’re going through and cancer is as foreign to them as it was to you a month ago. They are terrified of offending you, of hurting you, of making things harder for you. They will probably become overbearing at times, but for their sake, just take it. In a strange way, I realized that I needed to be there for them as much as they needed to be there for me.

    My older sister is probably the person I’m closest to in the entire world, and I knew that my diagnosis rocked her to the core. And my sister, while tough, is still an emotional person. And later into my hospital stay I began to realize that I never saw her cry. When I thought about it more later, I realized that it’s impossible that she wasn’t crying somewhere, and someone had to be there during those moments when she was spent and most vulnerable. That person was her then-fiance and my now brother-in-law, Roger. I was able to thank him for what he did for her at her wedding, and it was a very special moment for me. Don’t forget the Rogers in your life.

  5. You can do stuff with your time. Inductive chemo is mostly really boring and a lot of waiting around. I literally sat in my hospital bed for 60 days and watched every possible episode of ‘Everybody Loves Raymond’ that came on hospital network TV. When you think about it you’re kind of on a vacation from work/school (albeit under different circumstances). If you want to learn a new language, do it now! That list of 20 classic novels that you’ve always wanted to read? The Brothers Karamazov, here you come. I would be such a better person if I had spent my downtime reading rather than watching the shenanigans of the Barone family.
  6. Lots of random people will email you. People will come out of the woodwork when they begin to hear about you being sick. Your volume of email will probably get very high. I REALLY regret not replying to most of these emails, even with just a short thanks. I know they didn’t expect to get a reply, but they took time out of their day to let me know they were thinking of me.
  7. Don’t watch medical dramas. I still don’t watch “House.”

I know people come to this site for various reasons, but I hope this helps someone. And please remember it’s not intended to be some authoritative list of directives for all cancer patients, but just things I’ve learned as I reflect upon my time undergoing treatment.

For those of you in it right now, just remember, one day at a time.

One day at a time.

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