Please Bother Me

Sorry that it has been a few days since I last posted. I have had so much going on at home and have not really felt well in a few days. I had my ambulance ride, which was just so much fun. I have been teaching. And, I have been busy planning my 80's themed birthday party. Which by the way, I have decided to go as Rainbow Brite instead of Cyndi Lauper. It's going to be so much fun. I get my new tattoo tomorrow, so I will remember to post a picture of that for you all to see. Monday, I see my Oncologist and get new appointments for scans. It's that time again. Scan time always sucks and scares me to death...but this time, I refuse to let it.

I have been in so much pain lately. Obviously, it’s something everyone experiences, the body’s response to injuries, illness, and inflammation. I’d had my fair share of it before getting diagnosed but cancer has redefined it. You could say I’ve become something of a connoisseur of pain and all its flavors and variations…

The thing about many types of cancer (including mine) is that it can be growing, spreading, and doing damage long before the pain sets in. It’s like the malignant cells can somehow work around the nerves and do their work silently. And then there is a day where you wake up and realize something is very wrong… For me, it was a stage 4 diagnosis that was the beginning of a journey into experiencing pain that I could never have imagined.

It shouldn’t surprise anyone to know that a person’s mood is often influenced by people who surround them, especially spouses who share the burden of everyday life. For patients with cancer, a spouse is often someone to lean on for emotional and physical support, who attends medical appointments and helps keep things moving forward even when a patient cannot.
Let’s talk about a National Cancer Institute (NCI) study, published in Cancer Epidemiology, Biomarkers & Prevention, in which researchers found that cancer survivors were four times more likely to suffer from depression 11 months later when a spouse reported feeling depressed compared to couples without any cancer-related health problems. Survivors whose spouses described a better health-related quality of life had a 30 percent decrease in depressed mood 11 months later.



“We were surprised that the effects of the spouses on the survivors were so much larger in this study than the effect of the survivors on their spouses,” said Kristin Litzelman, PhD, a National Cancer Institute cancer prevention fellow in the Behavioral Research Program. “We expected to see a more reciprocal relationship.”


According to the American Cancer Society, there are 13 million cancer survivors in the United States. The impact of cancer survival is felt not just by the patient, in some way the disease affects the lives of others because as social creatures, humans do not experience stress in a vacuum, said Scott Irwin, MD, PhD, director of Patient and Family Support Services at UC San Diego Moores Cancer Center.



“This reciprocal relationship of distress among spouses has long been hinted at, and these findings further point for the need of healthcare, in general, to see patients and their family’s as the unit of care, as has long been done in hospice and palliative models of care,” said Irwin. “Based on these data, simple interventions for patient and spouse may work to alleviate depression and improve well being, whereas complex interventions for just one may not.”


Further work is needed to better understand the complex interaction of biopsychosocial factors in patients and families, which interventions might be best suited to alleviate depression and which interventions might bolster resilience and well being.


The bottom line, spouses or caregivers need to take care of themselves as much as they take care of their loved ones who are or have experienced cancer. Look for healthy ways to reduce stress or seek help. At Moores Cancer Center the Patient and Family Support Services program offers a free, weekly caregiver education and support group and periodically offer special workshops for couples or arts program to express yourself in a safe environment.

In the beginning, everyone rallies to the cause. It can be overwhelming, all the positive affirmations of “you’ll beat this,“ advice (medical and otherwise…), and the list goes on. But over time a fatigue sets in. You’re “better” but not “cured.” But for many of us, being “better” is not even close to the so-called normalcy of life before the disease. The struggle to survive both physically, emotionally, and financially can become an all consuming, full time job. And (using myself as a case study) that fatigue translates into a growing sense of isolation.


People just don’t know how to respond to chronic disease so they tend to drift away. Maybe it’s the old adage of “out of sight, out of mind” or maybe it’s something else. Fear perhaps? Or the awkwardness of not knowing what to say? The classic greeting of “how’s it going?” seems to be almost verboten… If I had a dollar for every time I heard my mom say that someone asked about me but then replied to her question of "why don’t you ask her yourself?” with “I don’t want to bother her…”, I’d be traveling a whole lot more. I’m serious, it happens that often.


Obviously, I’m not dead yet. Sorry to be blunt about it but hey, this off the radar screen thing gets old. Yup, I had to quit working and stop doing most of my old adrenaline junky activities but I’m still kicking and trying to live a halfway normal life. Yes, I know, I just said living with the disease can be all consuming but there are periods of relative calm in between the flair-ups and trips to the doctors. To strangers, I’m just a just another “regular” girl going about her business. But to people I know (obviously not everyone I know!)? I’m sick and fragile and shouldn’t be “bothered…” Yes, sorry, a sweeping generalization but that’s how it can feel. So please, feel free to “bother” me! I promise I won’t tell you treatment horror stories because right now I have none to tell… I still like to talk about “normal” stuff…


So how do I cope? Sometimes not well… But my strategy is to get on with life (and believe me, I’m grateful for every day) and try to leave the past behind. Relationships need to be a two-way street. If someone is unable to get past my situation then I have to move on, and I am. Or perhaps I’m just a bitter cancer survivor who’s pissed off at the world? I don’t think so. But it’s easy to come off sounding that way when you write about issues like this. The stuff that makes people really uncomfortable. Maybe the stuff that makes you become one of the forgotten?


What do you do when you can’t sleep? Let your imagination run amok… Or at least that’s what happens to me when all the mental detritus that’s been accumulating finally tips the balance in the wrong direction. The last couple of nights, all that shit has been catching up with me and sleep has been futile.


Fear can be a very subtle and sneaky thing. I have put a lot of effort into understanding it, and learning how to deal with it. But it would seem that even in the process of confronting and then releasing my fears, a residue sometimes gets left behind. We’re talking about almost undetectable amounts but given enough time, it eventually builds up and becomes a problem.


In the past I would have fought a pitched battle inside my head to keep fear from getting the upper hand. It never worked and usually made things much worse. It took me a long time to understand this but the solution is to give in and let fear do it’s thing. But with a twist, once I realize what’s happening (again that sneaky thing), I try to step back into what I call observer mode. I let my mind have a field day with it and just watch. I think of fear as being like a wall of flood water rushing towards you. If you go to higher ground you’ll be safe and can watch it pass by. If you stand in the way, well… you’re screwed…


Of course this is not an instantaneous process and some serious existential angst still does it’s thing until I make it to the higher ground… But writing it all down in the predawn hours, that was the solution, the high ground. So the seesaw returns to level and I start a new day. And remind myself that every breath I take, every day I wake up, is a gift and a blessing.


In the darkest hour the soul is replenished and given strength to continue and endure.

H.W. Chosa

Love you all and truly mean it....and God loves you too,

Shanna xoxo

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna

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