I am Grateful for the Journey. And Thanks, Dr. G.

I like talking about myself. Sorry if this bores you.

This week, I had my first ever acupuncture session. It was amazing. I felt so good afterwards. I felt like I was doing exactly the right thing for my body. And then my doctor called.

Doctor G. My hematologist. He called me from his cell phone. Not his nurse - she didn't call. Not his receptionist. Not from an office phone. From his cell phone, my hematologist himself called me. No nonsense-like he told me my platelet count is down.

I know what that means. It means do something quick or end up in the hospital as a Fall Risk. Which means I'm not supposed to walk from my bed to the bathroom without accompaniment. Because if I fall, I could hemorrhage. Death could ensue. Or a big mess. Either way, no fun.

I may have mentioned in the past that I have an autoimmune condition. ITP. Idiopathic thrombocytopenic purpura. Kind of rolls right off the tongue, doesn't it? It is also known as Immune thrombocytopenic purpura. I like Idiopathic best. It suggests how little doctors know about this condition.  One thing that is a given, it dramatically decreases one's platelet count thus increasing one's risk of internal hemorrhage or bleeding out. Neither of which sounds particularly attractive to me.

Auto immune conditions are complicated. Their symptoms can be triggered by stress or by another illness. Such as a bad cold. If you leave a trace of your snotty nose on a countertop and I am unfortunate enough to make contact with this snot and develop a full-fledged cold, I will undoubtedly experience a drop in my platelet count. So I try really hard not to get sick.

Unfortunately for me, I have been experiencing a severe eczema attack (also an auto immune condition) for the past several months. My body is so tired of working to get rid of the eczema that my platelet count has dropped. And this is the big fat double whammy thank-you very much.

Doctor G is great. I had an annual check-up with him this week and he saw the rash on my hand and on my chest and was greatly concerned. He ordered blood work. He contacted me immediately upon getting the results. He says to me, "you're not gonna like this," because he knows me well. "You're not gonna like this, but I'm gonna put you on steroids. 60 mg. It should clear up the rash and jump start your platelet count. We'll check your blood in a week. But till then, don't climb any ladders or swing from any chandeliers." I said, "Well there goes my fun this weekend." "Yeah, I figured," he says.

Dr. G is going to retire next year on April Fool's Day. That's the kind of doctor he is. He dresses up on Halloween in a hospital gown with a big fake ass poking out the back. He plays banjo. Never misses Merlefest. When I asked him if he celebrated St. Patrick's Day, he said, "Oh yeah. Any ethnic group that likes to party, I celebrate."

So, I'm going to miss Dr. G. Because he is smart, funny, compassionate...all the things a good caregiver should be. But for now, I'm glad I'm still in his care.

My acupuncturist says it would be best to wait till after I stop taking steroids to have another treatment. I respect that. Eastern and Western medicine often don't blend well. And my whole ITP career has been one of walking a tightrope between treatment options and self care. It's been quite the journey. And while in the past I hated my body for it, today, I actually love my body for it. Because through the ITP experience I have learned so many important lessons about loving myself no matter what and respecting my body and its process. No matter what.

I like talking about myself. A lot. But I do so in the hope that it might brighten someone's day somehow. That I might somehow convey a tiny bit of meaning. That I might offer solidarity to another person experiencing bizarre bodily trials.

I am grateful for the journey. And thanks, Dr. G.

A Story About Stingy Jim

This morning at the Cancer Center, I met an older man who has to catch the bus to get to his chemotherapy treatments.  My use of the phrase "has to catch the bus" indicates my level of privilege.  I feel uncomfortable pointing the following things out:

To catch a bus in this town of Greensboro, N.C., one must do a lot of walking.  One must walk to the nearest bus stop.  And one must walk from the drop off to one's destination.  Often times, this is a significant distance.  People who ride the bus are completely acclimated to this degree of walking and inconvenience.  People who ride in cars often are not.

Additionally, to ride a bus in this town of Greensboro, N.C., one must plan ahead and allow roughly 45 minutes to an hour in order to get from point A to point B.  This time sitting on the bus is a good time to catch a snooze, to read a book, to play a game of Sudoku.  However, when one is feeling poorly, every jolt on the bus is unbearable, as is every loud voice, every bad smell.

Chemotherapy is an intense process.  It can leave one feeling weak, nauseous, dizzy or faint.  I did not go through chemotherapy when I went through cancer though I did a round that lasted 8 weeks after being diagnosed with ITP.  It was fairly mild compared to the treatments given to most people.  Even still, I was tired at the completion of each session, which lasted roughly four hours each.  My head felt funny afterwards.  I lived relatively close to the Cancer Center so I only had to endure a ten minute drive home.  Upon my arrival home, I immediately crashed.

So, you understand now that I am a person of privilege.  I did not have to catch the bus to my chemo treatments.  I had it easy.

The older gentleman who has to catch the bus to his chemotherapy treatments spoke to me at length about strange experiences he's had with death. He told me about a man whom everyone called "Stingy Jim."  He was so stingy, the man told me, that he only put a quarter in the collection plate at church.  "A quarter!" he emphasized.

One day, Stingy Jim walked into the liquor house, which is what they called bars back in the day.  Everyone was sitting around drinking or waiting to get a drink when Stingy told the proprietor to serve the house a round of drinks on him.  "Yes," Stingy said. "I reckon I'll buy all y'all a drink now.  No telling when I'll get to again."

Everyone was flabbergasted. Never had Stingy done anything like that.  Everyone sat back and enjoyed their drinks until they heard the screech of a truck's tires.  A tractor trailer had ground itself to a halt right outside the liquor house.  A white man with a red beard came running out of the truck saying "He ran right out in front of me!  I couldn't stop in time!"  Everybody looked around to see who had been hit but they couldn't find a body.  They looked all through the bushes by the road until somebody found a penny loafer with a tassel on it.  It was Stingy's shoe.  Stingy used to put a dime in his loafers rather than a penny.

The story of Stingy was interrupted by the nurse who brought my CBC results to me.  I looked at the paper, looked back and the man and said, "It's only numbers."  But the spell of enchantment had been broken.  The story was left unfinished.  The energy had already shifted to What's Next On My Agenda?  Oh yes, get ready for work.

I asked the man his name and told him mine.  I shook his hand and looked into his eyes, which tried very hard to conceal the fear he was experiencing.  I told him I hope things go well for him and to keep on kicking.  This felt completely inadequate.  As I walked away from him and out into the cold spring rain, I said a prayer in my heart for the man, knowing full well we will all end up like Stingy someday.  How and when is anybody's guess.

Blood

The Cancer Center makes me feel like crying.  Often, I am numb to the experience of being there.  But days like today, I have to stuff my feelings way down in my gut to prevent myself from making a larger-than-life spectacle of myself.

I enter the lobby and check in with a desk person.  I wait in the lobby for a phlebotomist person to call my name.  I go into the lab.  The phlebotomist person swabs my arm with alcohol and stretches a thick rubber band around my upper arm.  Depending on who my phlebotomist person is, we may chit chat about metaphysics, gardening, motorcycles or simply jab each other with good-natured jokes.  Then my arm gets jabbed and blood gets extracted and collected in a tube labeled with my name and other identifying factors like my birth date and probably a case number.

My little vial of blood travels to a room where people with microscopes and other machines count my platelets - as well as other things like my hemoglobin, white blood cells and absolute neutrophils.  My neutrophil count is 3.4, which appears to be low, indicating I am at greater risk from "infectious
agents both inside and outside the body."  Great.

But I digress.

The stats are entered into a computer.  A nurse person in the treatment area/chemo room, takes this information and delivers it to the pharmacy.  The pharmacist person analyzes the data and determines the weekly dosage of NPlate for me to receive.

Around this time, I am called back to the "flush room" to wait.  The flush room is a cubical tucked away in a corner of the chemotherapy treatment area.  Directly across from it is another cubicle where patients receive chemotherapy.  On either side of that are other cubicles. And this is how it is: each patient is in her own cubical.  Each patient has a television to watch in their own cubicle.  The cacophony of televisions is disconcerting at times.  Why doesn't the cancer center supply headphones?  I am glad I do not have to lie around and receive chemotherapy in that environment.  What a complete drag.  I used to have chemo treatments at a cancer center in Kernersville.  It was much smaller and not as busy.  There were no t.v.'s.  I was pretty comfortable there.

Again, I digress.

I wait for the pharmacist to mix up my dose of NPlate.  Meanwhile, a nurse takes my temperature and my blood pressure and makes chit chat before excusing him or herself.  I usually wait ten to twenty minutes for the pharmacist to deliver the NPlate.  Once it arrives, the nurse swabs my arm, the same one I had blood drawn from, and injects the NPlate.  Wham bam and it is done.

This is the ritual in which I participate weekly.  It rarely varies.  There was one week in which my platelet count was so low, I was admitted to the hospital on the spot.  That only happened because I missed my treatment the previous week.  I had the brilliant idea that I would give myself a break from it and go to the beach.  It was a nice break.  But it had ramifications that lasted a couple of weeks.

The emotions vary weekly, however.

One week, I sat in the flush room waiting for my shot and the woman in the cubby immediately in front of me starting throwing up.  I couldn't help but watch.  She sat in her chemo chair with a big plastic bag held in front of her and tossed her cookies.  In all the years of being in a treatment room, this was the first time I have ever witnessed a person lose their lunch.  And as I watched this, a strange feeling crept into my psyche that manifested in the following thought: 'I am not sick!  I do not belong here!  How can I ever get better when I am constantly subjected to the vibe of sickness?!  It was a form of indignation propelled by rage which soon manifested as depression.  I am not sick.  I am not sick!'

Today, I watched an elderly woman across from me as she received a bag of blood.  Her husband sat with her.  They were both thin, though the man looked solid whereas the woman looked frail.  The man had a kind face.  He smiled sweetly at the nurses as they darted in and out.  But he never spoke.  His creased forehead betrayed a worried mind. His eyes betrayed a weariness.  But he patiently sat by his wife.  She was tired, barely able to hold her eyes open.  Every once in a while a sound would cause her to open her eyes and she took in the world around her.  But she soon closed them again.

There was a rural aspect to the couple.   I tried to imagine what they did for a living, if they still work.  They appeared to be in their early 70's.  The man wore a flannel shirt and jeans.  His shoes were nice leather shoes.  Probably his Sunday best.  I imagined he put those on specifically to wear to the Cancer Center. His work shoes, he thought, were not suitable. The woman wore a bandanna around her bald head and an over-sized t-shirt.  A blanket covered her lap.  She wore oval-shaped wire framed glasses.

I watched her and wondered about her life, about their life together.  I was overcome with the urge to get up from my seat in the flush room and go talk to them.  About nothing in particular.  All for the sake of giving them some love.  Just that.  Just hope for their future together.  Just hope for a bit of ease in life.  But I sat there.  Watching the bag of blood slowly empty into her arm via the long line of tubing. Mesmerized by the process.

My platelet count was low today.  It had been holding steady in the normal range for a few weeks.  And I'd actually begun, once again, to hope that I'm going to get well.  That a day will come when I won't need these weekly treatments.  My platelet count today shot that hope down.  Dashed it against the rocks.

I will never be well.  I am not sick.  But I will never be well.

Is it any wonder why I have trouble planning things in advance - why, for example, I cannot entertain the notion of going back to school in pursuit of training for a viable career? Something that I'll be able to do when I'm 60? I have no guarantees that I'll be here that long.  The drug that is injected into my blood weekly has numerous side effects, one of which is increased malignancies.  Since I've already had cancer, this sounds like a raucous cancer party waiting to happen.    

After my injection today, I walked out of the flush room, past all the cubbies filled with people receiving some treatment or another.  I walked down the long corridor from the treatment room to the lobby.  The front door is inhospitable.  I do not care to pass through it.  In a way, it's easier to remain in the cancer center where it is automatically assumed that something is wrong with me than to go out into the world at large where I am perceived to be normal.

I am far from normal.

I have a body that wants me dead.

I have no ambitions in the monetary realm.

I have a vivid imagination that takes over my logic center more times than is useful.

I immerse myself so completely into my creative realm that at times I sacrifice going to bed at a reasonable hour or leaving for work in a timely manner.  My creative realm is much more important to me than time or money.  And that's fine.  It's just every once in a while, I'd like to feel "normal" by other people's standards.

Additionally, when I pass through the doors of the Cancer Center, I must again walk among the senseless violence that plagues the world.  War mongers.  Spree shooters.  Blood runs freely in streets and movie theaters.  The precious source of life that we all take for granted gets emptied out of people against their will.  I willfully allow blood to be drawn from my arm once a week.  But victims of guns did not consent to have their blood emptied out of their bodies. 

Once I pass through the doors of the Cancer Center, the careful environment arranged around the sick falls apart.  And the world at large is perceived.  And it is hard to bear at times.  

I'd like to feel a bit of ease in my life.  I guess I was just projecting my own desire for ease onto the woman directly across from me in the treatment area of the Cancer Center.  Or maybe not.  Maybe there is a universal desire for ease that we all experience.  Maybe I am merely finding this universal desire a bit too compelling to ignore.

I hammer on my keyboard as if the words that come out of my brain matter a damn.  I know that in the larger schematic, they don't.  But for the moment, they are keeping me alive.  They are the long line of tubing connected to the bag of blood running into my veins. They are my medicine.  I allow them to flow forth, hopefully bestowing a bit of lifeblood upon the reader.