Not Today, Death

“Don’t cry. Stop crying,” she commanded, as I trapped my sobs and focused on her words. “Don’t cry. You have one heart, one body, one life. YOU have to fight for it. Stop crying.” The Infectious Disease Doctor seemed exasperated with me, as if my tears were drops of weakness that made me sicker. Briefly I thought my illness must seem measly to the towering Serbian blonde. In that moment I felt so small in my hospital bed. It was day 4 and despite innumerable tests, no bacteria had been found despite the appearance of my lungs on x-rays and a CT. “Maybe you aren’t finding anything because RA is doing this to me.” “You have fever and pneumonia, all signs of infection. This is what we are treating with antibiotic, ” she waved her hand at an IV bag hanging from one of the poles next to my bed. An oxygen machine ringed in pale blue gurgled and hissed in my left ear. The night before a child with big eyes stood at my bedside wearing a dress in the same shade. Intuition said I should keep that to myself.

When I created this blog 5 years ago I was 44, and fresh off losing a tough, unfair battle for my health and career. I’d been fighting since I was a kid, for myself and sometimes for those who I thought needed a champion, and I was spent. In hindsight, other people, especially those in power, not only preferred women who didn’t make waves, but rewarded them for not fighting. Maybe if I adopted a quieter, more graceful approach during the 5th decade, life would prove less bruising. In any case, I needed time to heal. What I didn’t know is that my fighting spirit would one day be the difference between life and death.

Lying in that hospital bed a few weeks ago, I feared going “…gently into that good night”, dying of pneumonia as the poet Dylan Thomas did, but after 5 years of curbing my fighting nature I was sorely out of shape. There are dreams I haven’t realized because I laid ambition aside, trips I haven’t taken, and works I haven’t written. Death takes who it can snatch away, especially if one cannot fight. Medical professionals are often champions when we are weak, their educated treatment hitting a bullseye and chasing away mortality. And then, there is luck and those who rage; “… rage against the dying of the light” – Dylan Thomas. One physician listened to my mumbles about rheumatoid arthritis as I was sliding near intubation, the ICU, and a large sucking mudhole next to my bed (According to a study published by the American College of Chest Physicians, every day a patient is delirious brings a 20 percent increased risk of prolonged hospitalization and a 10 percent increased risk of death). Once he consulted with my rheumatology office and hung a high dose bag of steroids, the mudhole disappeared. For me, rage didn’t look like the screaming, swing at the fences anger of my younger years. It looked liked grasping, holding on and repeating my assertion that RA affects the lungs, despite feeling small and weak. A reward for my tenacity is more time to write and dig my toes in the sand. Love is sweeter now, too.

My sixth decade begins in a couple of months, time enough to regain my strength, embrace my true passionate self, and resolve to live as loudly as I want. I understand now that I don’t have time to waste. Death is funny that way.

 

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Another day, another doctor

As diverse as Christmas cookies and pills, doctors come in all shapes, sizes, and specialties.  Dr. P. is my chocolate chip cookie, my stand-by-your-woman constant family doctor for almost 20 years.  He owns his practice (almost unheard of today), has a common-sense approach, doles out prescription drugs only when essential (downside there), and teaches me about my health because he knows I like to be involved.  Unassuming and humble, Dr. P. tells me that the most important part of his job is knowing what he does not know.  I worked with both fledgling and veteran physicians over the past ten years and can attest that he is rare.  The few that entertain the concept that their knowledge of the universe is incomplete are better doctors.

The fifth decade has graced me with a need for specialized medicine doled out by special doctors who are experts in their fields.  I have admiration and respect for doctors who sacrifice a dozen years or more to learn their craft and sympathize with the bureaucracy which hinders their ability to give quality patient care, but I do wish I could simply go to Dr. P. for everything.  It is difficult to have an exchange or establish rapport with a specialist because he or she does not typically know what they do not know, such as how I feel about risk/benefit analysis.  They do not know, nor believe, that I have never had an illness that presented classically, which would make their diagnosis something I could have done myself with Web MD’s assistance.  Is it a side-effect of getting older to have less faith in doctors now than in my younger years?  Perhaps it is simply a realization that they really are practicing medicine, and on me.  In the age of cost-effective health care, residing outside of the statistical majority is to a patient’s disadvantage.  Popularity contests have never gone well for me and in proper order I seem to have been taking a medication for the past three years that is effective for only 15% of patients.  So the new specialist would like me to use a better medication, a chemotherapy drug that will give me the side effects you think of when you hear “chemotherapy”.  He even gave me a nifty decision-making brochure chocked full of fun statistics and possible life-threatening side effects that increase in likelihood over time.  He involved me in the decision and told me that patients who feel like they have some control over their treatment usually have better outcomes.  I hope he keeps that positive attitude when I deliver my decision in a few weeks.  I need this guy on my side.

In the meantime I’ll tell Dr. P. about it tomorrow when I see him to discuss hormones and this ever-widening spot on my back.  He spends about a half hour with each patient even though he only allows twenty minutes in the schedule.  I have waited for over an hour too many times to count, but it doesn’t irritate me because I always get my turn.  Tomorrow I have his second appointment of the day.  So exciting!