The slate gray sky outside my window complements the leaden aspect of my eyes this afternoon. It has been chilly, rainy, and soon to be snowy here in the town of Rochester. The day started well with some ongoing improvements in my numbers. My hemoglobin decreased for the third straight day, down to 8.3 -- although the nurses and doctors are generally unconcerned for such a normal outcome. My leukocytes (white blood count) is at 1.2 -- a very good sign) and my absolute neutrophils (ANC) are at 0.47 -- also a very good sign. My platelets are now at a respectable 95,000. These are all signs of an immune system rebuilding itself.
Maintaining balances of some of medications has been a chore. My cyclosporin levels remain very high, so I am to continue my dose tonight and they will take my blood by vein puncture instead of from my Hickman, I guess they are wondering if the method is slewing the outcome. I think it’s my brother Kevin’s redneck T-cells playing war games. Otherwise, it remains a balancing act with increases in one med causing additional need for minerals like magnesium or potassium, and I supplement as needed.
I would fight now, but I’m too tired...
My chief opponent at the moment is fatigue. Although I continue to lose a few grams a day, my body feels heavier and harder to move about. I find myself dozing off while reading, while writing, and even while walking. Bedtime is usually before 10:00 PM and getting up at 6:30 AM can require a fire-breathing alarm. Of course, I get up many times per night, most of those are a blur.
Fatigue is natural while the body heals and recovers from trauma. Mine has received about all the trauma it can handle. I am constantly reminded not to fall and to avoid any bruising or even minimal damage to skin or other areas, because the energy needed to recover from even a relatively small accident, may be more than I can afford. Still Marian and I generally walk at least one-way to or from the hospital (as much as possible in the subway) so I can get some exercise. Of course, I have been told that I still get some exercise from jumping to conclusions...
Darkness falls and what are you doing tonight?
The sky has turned to black and the bustle in the street has lessened somewhat. I am sipping from my ever-present water bottle and letting my mind drift home, wondering what wonderful, sweet, mundane activities fill the hours of my friends. How normal is a normal life...just now...just tonight? Are you treasuring each moment, be it family, friends, business, worship, or just for fun? Are you passing the time watching American Idol and arguing passionately for your favorite? Are you rehearsing a play with friends and wondering if you will ever remember that line? Are you in the arms of a loved one and just enjoying the precious moments?
Perhaps you are plowing through the latest thriller, or wading hip-deep through the latest political memoir? Maybe you are absorbed in your favorite craft, or enjoying a home cooked meal. Maybe, like me you are journaling, wondering what you can possibly say that other’s might find interesting.
I struggle with that part of writing the updates. I need to write down what I feel and what I see and hear. I believe it validates me as a human being and satisfies the need to know my thoughts are recorded somewhere other than in this leaky old mind. You see, I noticed that, while on some of the medications, I have trouble focusing well enough to remember important facts and dates (appointments, etc). It’s part of the reason I am not allowed to drive while under treatment.
My darkest dreams come in the mail...
My Blue Cross Blue Shield caseworker told me on the phone this afternoon, that she was worried about me. I’ve been researching to validate some of the bills I’ve been receiving from unnamed sources and growing upset over what I believe may well be inappropriate overcharging for services. She is upset with me for worrying about the bills when I am supposed to be focused on healing. Yet, I pointed out to her that the bills don’t come with a “Don’t worry about it, we’ll talk when you are better...” flag or a notice to take my time.
No, the bills come with demand for immediate payment, even though many of the charges are still pending insurance processing. Matching the service reported to BCBS with the service indicated on some of the bills is nearly impossible. How does a routine blood draw and hemotology lab appear on a BCBS statement as a Medical Emergency? I have questions and I am four hundred miles away from the folks who need to answer them.
I wonder if hospitals find patients dead in their bed, surrounded by reams of routine billing that sucked the life out of them? I was only at it for about two hours this afternoon, and felt like I had worked an entire day. My pulse races just thinking about another visit from the Unpaid Medical Bill Fairy, who is not sweet, does not leave a treat, but craps bills on your head and short-sheets your bed.
I have sad news for you TV viewers...there is no EASY button.
Are we really allowed to ask questions?
I have an idea for all those unemployed and chronologically-challenged unemployable folks out there: Maybe they can get a grant to start a group to function as unpaid medical billing advocates for those too sick, too ill, or simply too old to ask the necessary questions and help clean up our medical system from the dirty end, instead of spending billions to sit in rooms with high-paid attorneys on each side debating minor shifts in policy that will never trickle down to the front lines, where folks are intimidated by legalese mixed with medical jargon and cannot reasonable even be expected to connect the bill for services with the insurance claim explanation, because the bills don’t even speak the same language.
I know this cantankerous, old bureaucrat could use an advocate as he contemplates which bills will receive small doses of his meager resources. I am tired. I am sick. I am confused, and I am scared as a long-tailed cat in a room full of rocking chairs. And I will tell any of those medical providers that despite their wonder science and bed-side manners, I will lose sleep tonight as I ponder paying bills that may as well be written in Chinese or Portuguese.
That is a malady for which I cannot take a pill. And I am willing to bet that nearly everyone who reads this far into today’s update and bothers to review their medical bills, will have experienced the same frustration.
There, I’ve gone and made myself angry again. I think I have harangued you wonderful folks with my frustration long enough. Tomorrow is day +16, and I expect to wake up to another day worth recording for my own benefit and perhaps just a bit for you.
Thanks for the prayers, thoughts, cards, and e-mails. I pray that by the time you must collide with the customer service end of this monster, some one has taken the time to clean up all the detritus and misinformation. You are my light and the hope in my heart.
God bless you all,
Mick