Brain Matters: The Verdict Is In

“And it’s not that bad.” But, it’s not that good either. I am an eternal optimist by nature, but this one is a balancing act no matter how hard I try to tip it in my head.

The brain scan was a four-hour ordeal that if not for my dear mother, would have been far less tolerable than it was. We arrive at the clinic on time Thursday morning (first mistake) and are greeted by a two-man floor washing crew. They are painstakingly scrubbing the steps and wheelchair ramp to the entrance. The steps are a danger already as the railing is set so far below where anyone’s hand would rest that it is useless. Keeping the stairs slick with soap and water just seems ludicrous. However, it makes for a funny photo opportunity since there is no way to verbally explain the absurdity of the set-up. Some things you just have to see to believe.

Watch your step!

Who was this railing built for anyway?

We manage our way in, gripping the floor with our shoes and successfully hurdle our next obstacle; a bucket of water and another worker bathing the tiles in pine scented toxins. At the front desk, I check in, pay my dues (equivalent to $250 U.S.) and they stare at me with no further direction. In this country, it means one of a few things: go away, sit down, or I’m looking at you saying nothing because I don’t know what you should do. Please use your best judgment and remove yourself from my presence. I’m eventually called by someone who I follow via a zig-zag pattern (around moppers and sweepers) to a dark, cramped office where a man sits in a swivel chair. The doctor half-smiles and says, “Soooo?” I quickly pull words from my brain and announce I’m there for a SPECT scan, which he confirms he already knew (duh). I told him I had one last April and am getting another one to see if the affected area is stable, and as a baseline for future tests (post embryonic stem cells). He asks me for my last test, which I apologetically admit I don’t have. He lowers his eyes in grave disappointment and says, “Ohhhh, that would have beeeeen niiiice,” over and over for what seems like 30 times. I have to break his train of thought before I lose my patience. I console him by agreeing to e-mail him the typed radiology report as soon as I get back to the hospital -- it’s all I have. He seems content enough with this, but is still not happy because I don’t have the actual films. Once again, as if he wants to make sure I never forgive myself, he says, “Ohhhh, that would have beeeeen niiiice.” I ignore him and he seems to at least temporarily move on.

He informs me that now we will begin…..starting with a lot of waiting. Forty-five minutes to be exact. He explains that a tech will inject dye into my veins, which will take 20 minutes to work. This is the "tracer" in my brain that will show up on the images of the scan. But first, I must wait the 45 minutes it will take to “boil” the dye solution. I immediately wish I didn’t know they are going to boil whatever goes into me. Something about it is bothersome. Before I fully process how annoyed I am at the waiting time, I burst out with an assertive yet sincere, “Why couldn’t you do the preparing before I got here so it would be ready?” I want to quickly follow up with, “That would have beeeeen niiiice,” but I cannot hear it one more time, not even from my own mouth. My patience is less than lengthy lately, so in hindsight I’m glad I had the self-control. He is defensive in his response to my qeustion, and tells me if I didn’t show up, he would have had to throw it out. I want to argue but know it will be self-punishment. It always is in this country.

My mom and I entertain ourselves in the waiting room by watching our favorite activity in India: floor cleaning. It’s everywhere. Every building has designated staff washing the floors -- constantly. People are washing the sidewalks. An area will be washed and re-washed over and over for the entire day. It happens at the most inopportune times in the most random places. The crowds will be lined up at McDonald’s, and the guy is mopping the floor in between hungry guests. I guess they don’t have “slip and fall” lawsuits here. In the waiting room of the scanning place, the mop boy expects us to lift our feet so he can wash under them as we sit. If we weren’t laughing so hard, this might be possible. Instead, we are both frozen in hysterics and completely unable to move. When you first see this in India, all you can think is “In the dustiest city I’ve ever seen, they actually think this is going to help?” By the time you’ve been here awhile, you start to realize a large part of the population would be unemployed if not for floor cleaning duties.

It takes two

We wouldn't want any to sneak in under the cracks!

If you are in the way of a mop, you are in the way!

Someone finally comes to tell us that it will be another half hour until it’s time for the injection. I wonder if they don’t know the simple rule of thumb: A watched pot (or test tube) never boils. What is the hold up? We stand outside on the curb, mostly to escape the thick Lysol odor that permeates the room. But outside, the washing is just as active. Scrubbing, rinsing, then sweeping. Begin again. We go back inside because st least there are chairs there.

Alas, it’s my turn and I am put into a small room with no doors; reminiscent of a hallway more than anything else. I’m given my injection, told to lay still with my eyes closed for 45 minutes and to “be calm.” They draw closed a tissue paper thin curtain that is expected to shield me from all commotion which might interrupt my stillness. I daydream of the last time I got this done in the cushy private room at a San Francisco hospital. I try to will myself there but I get nothing. Hindu music blares in the background. For the next 45 minutes, workers proceed to make more noise than I think possible by one group. They come in and out to use the chair outside my curtain, seating other patients for their injections. They sing as they walk through to the back room. They flip on and off the lights while yelling down the hall. I can’t understand them but I feel like they are just saying, “Yep, light still works.” I practice my best mindlessness techniques and manage to stay quite calm (considering).

My resting "room" (after I'm done)

When it’s time for the actual scan, they take me into another room where I see the original doctor who still looks perturbed I don’t have my films from home. I’m asked to remove my jewelry, jacket and shoes as they direct me onto the table. They strap my head in the headrest, securing velcro strips over my forehead and chin, and stuff cotton on each side to keep it from moving. A radio station is full of static in the background, the printer is jamming during the test and the fluorescent lights are glaring through my eyelids. I am told not to move for the next 20 minutes.

It’s painless (physically) and after promising again that I’ll e-mail the original test results, I’m set free. We take a tuk-tuk back to the hospital and I fill the doctor’s request right away. He e-mails me back my results within an hour. This is express service and I doubt the doctors here aren't any less busy.

I quickly compare them to my old ones and although they are not severe in any way, the problem areas have spread. I have mild hypoperfusion (decreased blood flow) to both frontal lobes of my brain, and a temperal lobe on one side. Last April, the hypoperfusion was localized to my right frontal lobe only. Sigh….

I let it settle in that night and plan to talk to Dr. Geeta Shroff the next morning. I have a phone appointment with my doctor in California Tuesday and he’s the bearer of all honesty, so I’ll find out then exactly what it means. I am confident he’ll tell me not to worry (and not just to make me feel better). From a patient’s perspective, I’m not happy that there are more problem areas, but I’m not going to get too worked up about it either. I doubt the lack of blood flow to my brain will help me calm myself down if I start thinking too much, or too far ahead.

I meet with Dr. Geeta Shroff and Dr. Ashish the following day. She is non-chalant and not concerned with the results. She's already spoken to several other doctors for collaborative opinions. I appreciate her perspective on things, as I definitely resonate more with Eastern culture than with Western. I agree with her beliefs because they are mine -- tests aren’t everything, healing comes from within, yada yada yada. BUT, I am the patient, and being in that position, reality still exists and so does the fact that things got worse. As she continues to impress upon me that “it’s not that bad,” all I can think is, “because it’s not your brain.” I end up saying something along those lines (although quite kindly). I have the utmost respect for my "stem cell guru" and nothing can change that.

I know rationally it’s not that bad. I have the report and I’ve seen the scan pictures. I’m not worried per se. From some doctor’s perspectives, the decreased blood flow may be interpreted as hardly even significant. But, if that's the case, I want my doctor at home to tell me. Not because I don't trust anyone else, but because he's the one who knows me and what I've gone through better than myself at times. When all is chaotic and I cannot tell if I've gotten better or worse, he is the voice of reason. He points to my chart and says, "See right here, you used to be worse." Or, "Hmm....last time you didn't have this problem." With a multi-faceted disease, you get confused easily. What was last month like? Hell, what was this morning like? You don't count every little symptom, track your progress and worry constantly -- because that surely will make you crazy, if you've even managed to stay sane this far. So, you tell your doctor and pay him to remember.

I'm steadfast and confident about the ability of my baby stem cells. I truly feel they will prove themselves on a test like the SPECT scan in time. Maybe not now, or in two months, but one day. I already know they have started working by my improved balance, decreased pain levels and the absent need for my heart medication. When you are 28 though, you don’t want anything wrong with your brain, even if it’s not that bad and even if it will most likely go away. Taking it one step further, if there has to be something wrong (world’s not perfect), you don’t want it more wrong than it was less than a year ago. Since last April, I can clearly see it’s still “not that bad.” But, I also see the realistic picture of it not being that great either.

I decide to move on, quickly realizing my goal once again is for it to stabilize so I won’t be in this same position next time it's checked. It’s not uncommon for someone with Lyme Disease to have this issue. Over time, decreased blood flow to one area could cause the death of the tissue, and scarring on the brain. But, I’m lucky and it has not. No irreversible damage has been done at this point. I plan to keep it that way.

In any case, I suppose my less than perfect brain is a good reminder that I’m doing exactly what I should be. Antibiotics and the months and months of hyperbaric oxygen treatments I endured partially to alleviate this problem apparently didn’t work. Or did they, and I would be much worse off if I didn’t go through all that? It’s hard to know. Either way, the stem cells will help replenish blood flow to my brain and revive the tissue helping it absorb more oxygen.

All is well that ends well. The test may have not come out exactly how I had hoped, but such is life. The results showed my brain actually still exists and some days, that’s more than enough to keep me fighting this oh-so-tiring battle. The wisdom, grace and blessings I’ve stumbled upon through this journey are more important than anything else. Even a “perfect” brain. I have a pretty good feeling I’m going to earn that for myself -- and maybe it's even better than having one all along.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog