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Donna Smith

Donna Smith, American SiCKO, is executive director of the Health Care for All Colorado Foundation

September 19th, 2012 11:23 AM

Dead Woman Working: Cancer and Multi-tasking for Care

It’s 2012, and being a cancer patient means being prepared to multi-task.  From the first inklings that cancer might be one of the possible outcomes of a diagnostic journey, to notifying family and friends of test results, to studying up on treatments and drugs, to staying current with work and other daily responsibilities, to documenting fights for insurance coverage decisions and appeals, to updating others on medical progress or being able to provide nearly instantaneous information when and where needed,  patients use their cell phones, tablets, and  laptops in every setting imaginable.  Only when completely under general anesthesia have many patients been “disconnected” from the machines that are so much part of daily life. 

Yesterday, while I was receiving the first of several infusions I will have at an oncology infusion center, I wasn’t the only one asking, “Do you have wireless here?”  The medical staff was happy to report that of course they were wired.  And we patients were pleased.   Without delay, I opened my bag and started situating my tablet and my phone so that depending on which side the I.V. was set up on, I was all ready.  Since Maryland state law forbids me from being so connected while driving, it would be truly disastrous if I were out of commission and off-line for an additional non-driving portion of a work day.  After all, the world does not stop for cancer – nor should it.  For patients like me who are not debilitated by our illnesses, making sure we are not losing career standing isn’t just an economic struggle, it’s a very personal and internal fight to hang on to normalcy when so much else around us is so “not normal.”

Many around me have come to expect fast and definitive answers – Americans are like that.  We live in a society that often sees life challenges as if they can be managed in sit-com style and a 30-minute time frame.  Disease isn’t like that.  And being diagnosed and cared for in our dysfunctional healthcare system isn’t like that either.  Patients are bounced around from doctor to doctor, specialist to specialist and from provider to provider trying to get properly diagnosed and treated over long periods of time.  And when the private, for-profit insurance companies get in the mix, denials and pre-certifications and appeals can make even the most straight-forward medical issue much more complicated to resolve. 

With all these delays and through all this disjointed care, the whole rest of life marches on.  Bills must be paid.  Kids grow older.  Jobs must be found or worked.  Spouses or lovers want time with their patients and have needs for comforting, and relationships deserve that attention.  In less highly digitized times, patients might have remained out of touch during some periods, but in today’s world, there is no room for and no time for that.  It can be a lot of pressure added to the pressure of being sick. 

During my time in the infusion chair this week, I only briefly spoke to another patient before plunging my face into my emails and trying to do at least some of my daily work.  My nurse asked me once to try to keep my arm straight – the one into which the I.V. line was hooked and accepting my medications – when she noted that I was typing and bending and restricting the flow of the drugs.  Shifting to one-handed typing was challenging but less so since she made sure to leave my right arm free for work. 

Dignity is an interesting thing.  It is hard to earn, impossible to demand, and tough to preserve in the face of illness.  With illness and with cancer comes a measure of uncertainty and trying to hold all the flying pieces together is important to maintaining some sense of balance.  Maybe there are a few very wealthy people who can just worry about their health and getting well, but for most patients, the struggles are far broader and many patients like me require Internet connections all the way.  Multi-tasking is survival for many. 

What would make the patients’ fight for dignity much less daunting would be removing the worry about insurance from the scene.  Just knowing we have access to needed care no matter our work status or our relationship status or our financial standing would be a great gift a civilized people could and should give one another.  With an improved and expanded Medicare for all for life system, no matter what else happened – even if a patient was sick and had diminished capacity for work – there would be no need to worry about access to care. 

With for-profit insurance companies out of the mix, multi-tasking patients like me might be able to shut down those electronics for a few hours or at least just use them as a distraction from the loneliness and boredom of sitting for long hours waiting for or receiving care.  Maybe the need for multi-tasking would shift to finding ways to get the most out of the rest of our lives rather than fighting every step of the way to spare us from cruel or untimely deaths. 

For now, we patients had better multi-task and stay on top of all that we can lest we lose parts of ourselves that can never be recovered either physically, financially or emotionally.  So, for now, please keep those medical waiting and treatment areas wired up out there.  Patients are working and multi-tasking for care and for their survival.

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