A professional reflection on the 'Dark Side of Having Cancer'

In March, I wrote about the difficulties of melanoma in "The Dark Side of Surviving Cancer". It addressed some of the mental and emotional challenges and hurdles and, well, the crap of having life turned upside down by a diagnosis.

I'm returning to that post again, but this time from a different perspective. Vivian Rodriguez Archilla, PhD is a good friend (and fellow Carnegie Mellon alumnus) who just happens to be a post-doctoral fellow at Memorial Sloan Kettering Cancer Center (MSKCC) in the Department of Psychiatry and Behavioral Sciences. She has introduced me to her department at MSKCC and was kind enough to give me a professional's analysis on some of the things I wrote, and how they can typify struggles many patients have.

Below, excerpts from my original post are italicized and bolded and Dr. Rodriguez Archilla's comments follow. They are excellent and informative, and if you know someone with cancer, please share this with them.  I'd venture many patients do not seek out help processing the pothole life just put in front of them – just as I did not.

The ups and downs of directly dealing with treatments and their results are fairly straightforward, if not always pleasant.
A cancer diagnosis triggers a ripple effect of emotions that is experienced by the entire family system. These reactions are felt and experienced in unique ways by each family member.  Keeping the lines of communication open is key in processing the surges of strong feelings and emotions that are so palpable in families affected by cancer.

Scan results come back with disease progression.
For most patients the days or weeks approaching scans are one of the most difficult times in their journey. The fear of recurrence or disease progression is very real, and it is often challenging to keep the anxiety at bay. For some survivors, the fear and uncertainty surrounding new or recurrent disease persist even after receiving good news.  In these cases, it is important to discuss these worries with a professional that can help them sort through their thoughts and emotions, and discuss effective ways to manage worry.

Dealing with unhappiness, though? The mental toll that has been (and continues to be) paid?  Maybe depression, or residual… something?
Most cancer patients experience significant distress at one point or another during their cancer journey.  Distress can be experienced in a variety of ways.  Some may experience intense dread or feel overwhelmed and hopeless, others may feel that they cannot control their emotions or stop thinking negatively.  Distress in the form of depressive symptoms and anxiety is a common reaction to a very real threat to life.  A systematic review of the literature found that approximately 30% of melanoma patients, including those in long-term survivorship (>5 years post diagnosis), experience significant distress warranting professional clinical intervention (Kasparian et al., 2009).  On top of the physiological insult cancer has casted, many survivors also experience great psychological and emotional changes that can significantly impact various aspects of one's life.

I should be the happiest person on Earth.  And I am not; or, at least, have certainly not felt like it, nor acted like it, on too many occasions spanning too long a time.  I have not brought happiness to the ones who should be most overjoyed about my recovery – Jen, Josie, and Tommy.
Be careful when using "should" statements.  "Shoulds" can lead to feelings of frustration, shame, or guilt.  We often create an image of who we want to be:  the perfect husband, the perfect father, the perfect friend, however, this unrealistic ideal can leave us in pursuit of an unachievable goal. In the context of cancer, it is unrealistic to assume that having reached NED automatically grants you a "happy" award.  For many, cancer is a traumatic experience that needs to be processed.  It will inevitably come with many highs and lows.

The fuse has gotten noticeably shorter; the patience level is at an all-time low.  Little things provoke significant (over)reactions.
Personality changes are one of the most common complaints I hear from cancer patients.  "I don't feel like myself" or "I just snapped! I never do that" are just a few of the comments I hear from patients when talking about how they are adjusting.  Again, it is important to remind oneself that cancer has completely altered the course of your life. This life-changing experience has also inevitably changed your outlook and priorities, shifting the way you react to the world around you. Reflecting on your values and finding ways to connect (or re-connect) with those values is a positive way to cope with these feelings.

But happiness?  It has become an "event" more than a state of mind too often this fall.  I am left with periods – sometimes long ones – of wondering what the hell is happening. Feeling empty.  Unfulfilled.
It is during these periods of uncertainty and emptiness when survivors need to find ways to connect to what is most meaningful in their lives.  Surround yourself with family and friends, re-connect with your core values, and don't be embarrassed to seek professional help.  It takes a great deal of courage to confront cancer and find the energy and resolve to move ahead in spite of an uncertain future.

How can a patient articulate internal struggles when so much is going right in their world – cancer and otherwise? How can someone even FEEL that way when so many others did not get the same medical response?
Every patient has his/her own unique story that comes with its own unique challenges and set of circumstances. Survivorship is such a blessing, and is the summit every cancer patient so desperately wants to reach.  Yet, despite many experiencing the blessings of survivorship many also experience a sense of guilt, survivor guilt.  Survivor guilt is a relatively common experience for many cancer patients.  Survivors who struggle with this type of guilt may find relief when discussing this openly with others, and attempt to find a purpose or meaning in survivorship.

This all sounds almost silly to write, embarrassing even. [T.J. Note: especially after just spending a few days with the family members of melanoma patients no longer with us]  Part of the reason – a big part, actually – to publish something so negative is that I can't possibly be the only one to go through the physical rigors of cancer treatment, only to come up somewhat short on the mental side.  I shared this with other patients and found quite a few are in the same boat.
It is so important to talk and process what this experience has been for survivors as well as caregivers. For many, it is a daily struggle to gain back a sense of normalcy, but it is a little bit easier if you feel like others understand your struggle and validate your experience.  Sharing your story with others will make the process easier on everyone.  We cannot read minds, but what we can do is talk to each other and process the challenges, the ups and downs, the moments of utter shock or panic, as well as the moments of relief and sheer excitement over good news.  The catchy Beatles song comes to mind:  "We get by with a little help from our friends."

You start to worry if the experiences or the medications or the stress, or all of the above, have altered each of you in some irreversible way.
Couples have their work cut out for themselves.  Marriage without cancer is difficult and requires plenty of open communication and understanding to get through tough times.  Add cancer to equation, and this becomes an even greater challenge. Research tells us that couples who coped with stress in a relatively healthy manner prior to cancer are going to have an advantage when facing cancer. Yet, successful coping is dependent on the amount of concurrent stress experienced (i.e., work, finances, illness demands, interpersonal conflict).  People cope better when they face a problem or crisis head-on, rather than try to avoid it altogether or "wait-it out."  Couples may start by working on their communication skills (e.g., knowing when to actively listen vs. providing solutions), learning best ways to show appreciation for one another, maintaining a sense of humor, and making time for each other.

Families look to continue the mission a loved one started before cancer took another life prematurely.
In facing the loss of a loved one, families often attempt to find meaning and purpose in what has happened.  One way to do this is by creating a legacy project where the life of a loved one is celebrated and remembered in various ways (i.e., organizing events, establishing a foundation or fund, or simply building new family traditions honoring the loved one).

Death pretty much sucks.  And if that becomes your focus… life can suck sometime, too.
It is really difficult, if not nearly impossible, to stay positive ALL the time.  Life will throw you many curveballs but it is up to you how you handle them and what attitude you choose to adopt in the face of uncertainty.

Huge thanks to Vivian for taking a constructive look at the blog and offering some valuable insight. More information on survivorship can be found at the National Cancer Institute website, and the American Cancer Society website.  She included one of her favorite Nietzche quotes, which is an appropriate sign off to the post: "He who has a why to live for can bear with almost any how."  Whether we have had cancer or not, following our "why's" will help us live a more meaningful life.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »