Monday, December 29, 2008

Nearly 2009

It has been too long since I wrote in this space, and it is hard to know where to start. Sometimes I think I worry too much about the family or the strangers or near strangers, friends of my parents, who read these words. Other times, I think that I hide behind that worry so I won’t have to work through my thoughts and feelings. And other times I choose to blame the fact that I am almost never alone. But tonight I am alone, and while my ears are screaming in the silence (shrilly telling me my short night’s sleep and pre-dawn arrival at the airport and cross-continental travel was too much for my tired body), there is a peacefulness to my solitude that has an almost miraculous quality.

I am in Vancouver, visiting Julia and reacquainting myself with the work here. It feels like the first time I have made a decision and done something totally for myself and made cancer answer to me. It is a wonderful feeling. I will be here all week, ringing in the New Year Canadian-style—whatever that means—and enjoying reconnecting with my partner.

I am also determined to figure out how to access the kind of in-between treatments check-ups and medical support I will need here if I am to fulfill my wish of resuming the work I started here last spring while continuing treatment at Sloan every few weeks. To that end I made some phone calls today, and managed to speak to 3 people at the BC Cancer Center here in Vancouver, two of whom were polite and varying degrees of helpful. I succeeded in not getting overly angry about the obstacles to getting a simple blood test. So far the roadblocks seem like standard red tape stuff, and not the truly absurd like what I encountered last week in Ohio.

On Friday I was feeling light-headed and low energy; sure signs of low hemoglobin (red blood cells). My doctor at Sloan and strongly suggested that I get my blood counts checked on Friday anyway, and I had a prescription for a simple blood test, a “cbc”, or complete blood count—the basic test to see how much blood you have (how many red and white cells, how many platelets), a 30 minute test that I have to assume is requisite knowledge for any phlebotomist. On the recommendation of my nurse practitioner I looked up Quest laboratories in Columbus. Quest is a national blood-testing company that my insurance covers and where I went once while in Florida to have blood drawn and mailed to Sloan for a special HAMA test; an experience not without its setbacks, but also quick and efficient. My experience in Columbus had utterly soured me.

First of all, they only have locations near the outer-belt of Columbus—apparently only suburbanites need routine blood testing and don’t want to have to go to the hospital every time. I chose Dublin, about a 20-minute drive from my mom’s house, because there were 2 locations there, so I figured we had a back-up in case one was super busy. Well, neither was busy at all because apparently they decided to close the day after Christmas—not that any such information was posted on the website, or at either location, for that matter. Luckily, a doctor’s office with a nice receptionist was open next door, and she gave us a pre-printed flyer with all the Columbus-area locations and phone numbers and hours (minus holiday closures) listed. I proceeded to call each and every one, only to get voicemail messages listing the same information as there was on the flyer. Convinced they must all be closed, I was nearly at my wits end, but trying not to yell in the quiet waiting room.

Mom looked them up in the yellow-pages and found an additional location listing, so I called and, low and behold, found a human at the other end of the line. But she closed in half an hour and had and attitude. She said I couldn’t go there if I wasn’t a patient of an adjoining practice, but insisted that a near-by location was open. Not having any other ideas, mom and I set out from the unfamiliar northwest side to find the outer-belt and head for the far east side. In the pouring rain. Did I mention is was raining? Pouring. Not safe for driving. Luckily, I called again and got a person this time instead of the machine. She confirmed that they were open and gave us directions that probably saved us an hour in that weather.

We finally arrive at the eastside clinic and I am seen right away. There are several questions about my diagnosis and prescription, but the phlebotomist let’s the lack of a “diagnosis code” slide and decides to draw my blood anyway (presumably in the spirit of Christmas). It takes two tries to find a vein not too scarred to let a needle in and my platelets are clearly low because even the dry stick bleeds, but hey, I have succeeded in getting the test. I should know shortly if my trials are over for the day or if I need to find a hospital to give me a transfusion and waste all evening in the hospital like I have wasted all afternoon in pursuit of a simple blood test. But no. It is not to be.

I ask the phlebotomist when I will have the results of the test, and she say’s probably not ‘til Monday, since my doctor’s office is presumably closed over the weekend. It is Friday afternoon, and despite her speculation that they are probably closed today, I know very well that the PDH does not slow down their constant attack on cancer just because Santa is in town. (I missed my goody-bag from Santa by one day this year!) I am confused, and ask her if she can call me directly with the results of the test as soon as she’s done. She explains that she’s not allowed to touch the machines or the blood there. Oh no, this blood is going to Cincinnati. A courier comes after 5pm and takes the blood to Cincinnati (a 3 hour drive from there), where the blood will be tested that night and the results faxed right away to my doctor—but by then their office will be closed. In the shock of this absurdity and the anger boiling quickly up from great depths within me, I stop talking and walk quickly out of the clinic, dragging my confused mother along with me before I can explain because explaining would mean exploding with rage—and what was the point of unleashing such a scene there in the clinic for the hapless, impotent phlebotomist?

Just to be clear: I was in need to a blood count so that I could find out if I needed a transfusion that day—not some time the next week! By Monday I would either have rebounded and made up for the missing blood, or, maybe, had a heart attack. Getting the results on Monday is useless and absurd.

When I got home I called my nurse practitioner back in New York and, after letting off a little steam, came up with a plan to have her call the clinic and have the test results given directly to me. Miraculously, she got through to the manager in Cincinnati and sent her a modified prescription allowing me to get the results myself and got me a number to call later that night for my results. They weren’t in when I went to bed at midnight, but when I woke up having to pee at 6am they were, and they were handed over without a problem. I was not in need of a tranfusion, but my hemoglobin was very low; 8.2 and anything lower than 8 is call for a transfusion. My platelets had dropped from 61,000 on Monday to 41,000; normal is 150,000-400,000, but unless you are bleeding transfusions aren’t needed until you drop below 10,000. So in the end, it was a relief. But as my uncle said the next day, if that’s everyday stuff, god help you. He had asked me about my new “setback” and I was very confused by this: I am hardly puking, I feel good, I am on a break from treatment, radiation is over—things are looking up. The only problem is, our healthcare system is defunct. Why on earth would my blood have to travel halfway across the state for a simple blood test? How is it possible there isn’t need or possibility of such a lab in the capital city, second largest metro-area in the state? Absolutely absurd.

Someday soon I will muse about the weird intimacy of radiation therapy, but for now I am content to release my discontent about blood work.


Anna said...

I don't even remotely understand the healthcare system. We just had a run-in with "diagnostic codes" today! Why is it so difficult to get the results of your own health! I don't get it! It's crazy.
Love ya,

Katie said...

Wow....I can feel my own blood beginning to boil just reading this.....beyond frustrating!

Katie said...

And Happy New Year! And to Julia too....I was glad to get to meet her! : )

How was the Canadian way of ringing it in? Hope you enjoyed!

Julie said...

Happy New Year! Let 2009 be a year of healing--of the health care system, among other things. Love you all the way from Mexico.

Anonymous said...

Happy New Year, Rose! I am intrigued by your comment about the 'weird intimacy of radition treatment.' But more than anything that (blood platelet number aside) you're feeling better. Hugs from your favorite swing state -- Karen

Chuck said...

Happy New Year, Rose!