Today I go to MCMC ( Mid-Columbia Medical Center, the hospital in The Dalles next to Celilo Cancer Center. I can get the same procedures done at PHRMH, Providence Memorial Hospital in Hood River, but it is harder for my oncologist to read the results from the Providence system on his computer... Are you sick of medical hokey-pokey yet? Then sign off now and check the rest of this post later, cause we are ONLY GETTING STARTED, people). Who was it that said, "Fasten your seat belts, we're in for a bumpy ride"?
I arrive at 9:30 am, chauffeured by indomitable Sister Lori. I register, where they ask me my name and address, employment and next of kin, etc, as if I have not just answered those questions for them a zillion times in the past three months. Yeah, yeah, yeah, par for the course, no problemo.
Then we go to the lab for blood work. Yesterday when the hospital called to confirm my appointment for a CT scan, I asked about getting my labs, and was told come in 15 minutes early to get them done before I went to Diagnostic Imaging. (And they reminded me that after my blood draw I needed to plan on an hour to swallow that godawful barrium slurry, which they have the unmitigated gall to flavor "Triple Berry" or "Banana." I ask you, does ANYTHING banana flavored taste good? Last time they offered to switch one of the two 12 oz shakes from hell with one flavored "Chocolate." Is NOTHING sacred to these people?) But I digress...
And little wonder... it gets ugly here. Maybe we should just fast forward to an hour and TEN POKES later, when they finally get into a vein, and skip over the part where I cry in the fuckin' lab-- not just because getting stabbed with a needle hurts (ya think?) but because sometimes my life seems to narrow down to a series of things like this that I DO NOT WANT TO DO and I have no idea when or if this little train to hell will stop.
I do not like being a patient. And what an interesting choice of words, patient. Where and when did that start, do you suppose?
I am not the most patient patient. But I am not the least patient I've seen, either. Is "patient" just what they hope we will be as we scoot down the assembly line of what passes for health-care in these facilities while one service tech after another does whatever individual task is alloted to them? After all, whatever goes on in the bigger picture of my life, any one of these people is just trying to do their job. They are not responsible for my whole experience of this health-care event. In fact, no one is. That is the problem. Certainly, I am not the boss of this factory--- hell, I know less about it than anyone sporting a name tag. I am simply the product being poked and prodded and eventually shat out the other end of this machine. But I digress....
Okay. I get to radiology, where the frazzled receptionist reports that I am late, which means I will be late drinking my baby shit blend (Triple Berry!) and therefore late for my turn at the CT machine. They have a schedule, yo! The nurse responds that I am likely to make them even further behind, since I must have been a "hard stick" and have "bad veins."
Can I say I got a little defensive on behalf of my veins? I wanted to say, yeah, well, they do everything I ask of them just fine-- maybe they were never intended to serve as frickin' faucets. (The you stupid cunt that would follow is only implied, I assure you.)
Anyway, the second time I start crying while she searches for a new vein for the IV contrast solution, my nurse is very solicitous. She says, The next time you do a CT, you should be sure to tell them you are a hard poke, and that they need to take you to CT and start the IV FIRST, and THEN call the lab and blah blah bla.... THAT was when really started losing it and she had to get me a box of Kleenex.
Here's the thing, I tell her, I have advanced breast cancer. I have NO IDEA if or when there will be a next time. I have no idea what will be required of me from to one week to the next-- what labs or scans or tests to expect. And I do not know how hospitals operate-- I don't work here, I don't remember the protocol for any particular procedure, and THAT IS NOT MY JOB! Isn't that someone else's job? This is not my field of expertise. I have to rely on others to help guide me. How come I am expected to be the one in charge?
She understands, and she is sympathetic. I mean, none of these people WANT to see me cry. But. She still gives me a pep talk on how I have to be my own advocate, like it or not, and she still asks am I sure she cannot use my right (surgery-side) arm? What exactly did they say about that SEVEN YEARS AGO when I had the surgery? Gee, I say, why don't you call Dr T? He's my oncologist, maybe he knows.
Once the horror show is over, my actual time in the machine is about 30 seconds. Okay! I can get up now, out comes the IV, and the nice nurse wants to know if she can buy me a fancy coffee drink in the lobby, since I've had such a rough day. Who am I to say no? I know she's doing her best. She is a kind and well-intentioned human being. I take her up on a double short americano. I thank her. I try to be gracious.
But I am drained and unhappy and angry and impatient with this whole process. I do not want to be a patient for the rest of my life. Or be a patient INSTEAD of having a life. If I feel good now-- regardless of whether the treatment is "working" or "not working," -- why aren't I in Spain? I'd hate to spend the time I don't feel sick chasing a remedy and wind up feeling shitty with only six months or a year left to spend.
I have been at this for three months now. That is a quarter of a year. If hormone positive breast cancer is not responsive to hormone therapy, one's predicted life span decreases from maybe ten or twenty years to something closer to two. I know we love our "denial of death" in this country, and I don't want to spook anyone, but shit man, this is personal. If I spend too much time chasing treatment-- and remember we ain't talking cure here, that is off the table-- I could miss my chance to live my life. 'Cause I am here to tell you, some people might be able to make a life outta being a patient, but I do not think I am one of them. I don't want to be reckless or fool-hardy-- but I am not sure which course of action best fits that definition.
There is something banging around in my head tonight about the word and the idea of patient. Rilke said something I've always loved, in his Letters to a Young Poet:
And lastly: To Lori for carting me around on two of my grouchiest of days, and to Janet for holding my proverbial hand in the dark, my deepest gratitude and love. Thank you for your tenderness and your patience with me.Be patient toward all that is unsolved in your heart, and try to love the questions themselves. Do not now seek the answers. The point is to live everything. Live the questions now. Perhaps you will, without noticing it, live along some day into the answer.
Love to you all.