Yesterday’s visit to the clinic brought disappointing news. My white blood cell count has dropped–no, really plummeted. The doctor is very concerned. He sent me home with antibiotics and antivirals. Also, another shot to stimulate WBC production. WBCs are basically your immune system, and with a low WBC count my body will not be able to fight off infections.

Since my body needs help–antibiotics to fight off bacteria and antivirals to keep viruses at bay–now it is a waiting game. I have exchanged my armor for a cheerleader outfit since I am at home. Rooting on the WBCs to win this game. I shake my pom-pom and yell, “Push ’em back! Push ’em back, way back!”

I am definitely not comfortable in the cheerleader skirt; I am ready to put my armor back on and fight this battle. But first, I need those damn white blood cells to do their thing.

A week after chemo, I am back at the cancer care for my check-up. I walk in and the receptionist behind the counter recognizes me–that can’t be good.  “Hi, Ms. Scott.”  I convey that I am surprised she remembers me and joke that it probably isn’t good; she is seeing me too often.  No longer any need to explain who I am and why I am there.

Parking lot full. Waiting room about 1/2 full.  Driving in today my mind is flooded with thoughts. I got sober and clean in a 12-step program, have been clean and sober over 25 years.  I have seen people from all walks of life.  Alcoholism does not discriminate; all are welcome–doctors, lawyers, musicians, presidents, beggars, homeless people, and people just like you and me.  There is no charge for meetings; all that is needed is a desire to stop drinking.

Sitting here in the waiting room, I realize that is just the way cancer is: it does not discriminate. But you know what? Treating cancer is not free. I am lucky; I have pretty good insurance, and most of my care is covered under my policy.  But what about others?

I look around and I can tell some of the people here cannot afford care.  What then?  Not only do they have to worry about the cancer but about how in the hell to pay for treatment.  Stress is not good for recovery.  Hard to keep your armor up with all these outside forces clinging and pulling constantly.

I eavesdrop on conversations going on in the room.  There is an old warrior, around 60, not far from me.  She grew up around Folly Beach but now lives in this area–“landlocked”–jokes about the beach at Fort Yargo.  She is talking to another woman who is also in her 60’s.

This woman’s hair is starting to grow back and it looks like her granddaughter is with her.  The granddaughter never stops rubbing the woman’s head.  I totally understand–I like rubbing my bald head also.  The two women are talking and other people are listening; I can tell because I see others nodding their heads as the first woman speaks.  She had lung cancer, and now the cancer is in the lymph nodes in her chest.  Terminal.  But she says no. “I have grandchildren to raise and God knows it.  He knows what he is doing.”  She believes that everyone’s days are numbered and only God knows how long we each have.  God took a 10-year-old but look at her, 60 and still here. Why?

The ladies drift in and out of different conversations.  Paula Deen’s name is mentioned and I just about fall out of my chair.  The waiting room is full of people of all colors and I am sure all religions.  These are two Southern women who feel that Deen is getting a raw deal.  Thankfully that subject passes quickly and we are back talking about cancer.

I am trying to write all this stuff down when a couple takes the chairs next to me.  These two are great. He is wearing blue jean shorts, a polo shirt, and a cowboy hat.  She looks scared and nervous. I can tell he is the one there for treatment. He is pale but looks at me and I say, “What’s up, dude?”

She is handling all the paperwork and walks away to discuss it with someone.  He smiles at her and says, “You take care of that and I’ll talk to her.”  He smiles and says, “Tell me about the chemo.”

I am like, “It’s not good.”  Then I feel bad for saying it so I just tell him about the fatigue.  We laugh. He had to have radiation first, then chemo.  Starts chemo tomorrow; he has lung cancer and cancer in his hip.  He asks about mine. “Breast cancer.” He says, “At least you can lick that. Mine is terminal.”  I say, “But you are alive today.”

He is a guy who has always worked hard, probably construction.  He started feeling more fatigued than normal. Lost 30 lbs., started worrying.  His wife took him to the hospital.  He told me the doctor almost cried when he told him he thought it was cancer.  Of course, his wife broke down and he tells me she is still having problems, crying and upset today.  He said–to both of them–no use crying over spilled milk.  We talk more and just enjoy helping each other get through the day.

His wife walks up and says, “They are going to charge us $15 to fill out the paperwork.”  She says, “I will find $15 somehow.  I borrowed money from my sisters to pay the last two bills.”  I look at her and say, “I will pay it.”  She starts crying. He says, “You don’t have to do that.”  I walk to the counter and give them the $15.  The receptionist says, “That is very nice, Ms. Scott.”

I don’t know; it just felt like the right thing to do.  I spent the morning drive thinking about people without insurance and the universe put them right in front of me.  Cancer, like alcoholism, is an equalizer.  It is just unfair that medical treatment puts so many people in debt so they not only have to struggle with the disease but also the financial burden that is placed on them.

I go back and sit down with this couple and we continue to talk.  They live in Walton County, have been married 18 years, have two children, live in a trailer park, and have no insurance.  I tell them about my morning drive in. They show me pictures of their kids.  We exchange phone numbers. He talks about God and how he cannot understand how he ended up with cancer.  He knows guys who smoke five packs a day – he only smoked one.  How did he get it and not them?

I do not have an answer.  I know that the God I believe in did not give me cancer.  I believe that bad things happen sometimes.  I do not think God sends hurricanes, floods, tornadoes, cancer, AIDS, or any other horrible thing.  Bad things just happen.

There is an Iris Dement song I love called “The Night I Learned How Not to Pray.” Part of the lyrics are:

“That was the night I learned how not to pray
God does what God wants to anyway”

I love that song, but that is not how I feel.  I think bad things happen and God gives us the people and the things in our lives that we need at the time.  We just have to be open and willing to receive them.  I am not a religious person at all, but I do believe in something bigger than me. Call it God or call it nature or call it the universe, or maybe it is just the goodness and kindness of humankind.

June 24, 2013

The chemo fog is finally lifting.  It is amazing the difference I feel during the first five or six days after chemo.  I imagine it feels like taking your armor off after a long battle.

The first day after chemo is usually good.  Go back to the clinic to get the Neulasta injection, feeling a little tired but not bad. Go to work, have a decent day, thinking maybe it will be different this time.  Maybe the chemo will not hit me like it did last time. Feeling pretty confident.

Then the second day after chemo rolls around and ugh–not so lucky. Arms and legs feel like they are not attached to my body; I lay on the bed and I know my limbs are attached but I cannot feel them.  I think this must be what it feels like after a long battle, when you finally make it to safety and remove the metal armor.  I am sure after carrying that weight around all day your arms and legs must feel dead.

That is the way I feel.  I have made it to the safety of my own little world and I remove my armor.  The heart, soul, spirit, and brain are there, but the body is nowhere to be found. The shell–the armor–has been removed.  The world seems different after chemo.  The eyes see but the rest of the body is in a daze, the other senses not in touch with the world surrounding me.

As days three and four roll around, things get worse.  I just cannot get comfortable: I move from space to space–bed, futon, swing, even the floor. Just someplace to get some relief.  Walking from room to room gets harder; I’m out of breath, dizzy, needing to sit down, almost passing out. Cold, then hot and sweating–just looking for a little peace.   Moving the arms and legs get harder and harder. I need to take slow, deliberate steps, not stand up too fast–shaky, dizzy, it’s hard to breathe.

I have to be careful; just need to get through this chemo as healthy as possible. Just keep taking one step at a time, putting one foot in front of the other. One day at a time, trudging.  The warrior fights even when it feels like there is no fight left.  Life is worth it–fight to stay alive.  Why?  I am not sure.  Just fight, because that is who I am.

I met a true warrior today. A beautiful, slim woman sporting a bald head just like me. I am in for my second chemo; she has completed her chemo and is just back for a Herceptin infusion. Starting radiation on Thursday.

We both caught our breast cancer early but she had one lymph node positive so our treatments are a little different. I call her a true warrior because she almost died after her first chemo treatment. It is sometimes hard to believe that the drugs used to heal you are also drugs that can kill you. She went home after chemo, passed out, and stopped breathing. Her husband gave her CPR and called 911.

She spent four days in ICU and three more days in the hospital. Discovered she had Addison’s disease. She has three children and nine grandchildren. She has too much to live for; not planning on checking out anytime soon. Warriors encouraging warriors. Sharing life stories; sharing experience, strength, and hope. Encouraging each other to keep taking the next step.

Some days it feels hard to keep taking the next step, but what else can we do? We are suited up in our armor and so many people expecting us to be strong, expecting us to keep fighting. That is our job now— trying to stay alive. Trying to survive to live a life that has now changed forever.

Each moment seems to mean something now. The people in my life, now so dear and so important. The beauty of nature, blessing my life like never before. These are the things that I need to hang on to, the things that are important. I pray that I will be able to remember and cling to the lessons I am learning with each new day.

The warrior is tired today. So hard to put on the armor to fight the good fight. Have been waging war to keep my baby goats alive since Monday a week ago. Had hoped to use last week to rest up and prepare for this week’s battle, my second chemo. I have not been able to rest or take good care of myself, so preparing for today’s battle is hard.

But I do it anyway because I am made of equal parts Chew, Sikes, Braswell, and Scott. We do not run; we fight. I have my mother’s backbone and my father’s compassion. My mom’s strength to stand up for myself and my dad’s loving care for other people and animals. My grandparents fought many battles. My dad’s mom selling eggs to buy school lunches for her kids. My mom’s dad, the town drunk, until he found God and got sober. My mom has battled also, with a mother who did not want her and told her so. My dad, raised by his grandmother for a time because he was the third of three boys and times were tough.

I come from a long line of fighters—survivors—so that is all I know. Walk forward and face whatever is thrown my way. I am weary. I am tired, I need rest, but for now it is time for battle. So I adjust the armor, head held high, and fight. Fight the good fight. It is all I know to do.

Wow. Unbelievable. This year just keeps throwing shit my way. Each time I seem to reach a little bit of peace, get a little distance, something else brings me to my knees.

The first of this year, I had a woman break up with me. I never knew there were people in this world that are so full of meanness. Maybe I realized it but never had any idea that someone would treat me that way. I realize now that I really just wanted to make life better for this person. We have all met people who have struggled through life. Always seem to get the short end of every deal. But maybe it is not life; maybe it is an unwillingness to change that causes some of these difficulties. I do not know. All I do know is that you cannot help someone who either is not asking for help or who refuses to change.

So I am just starting to feel better. Just starting to think about dating. Just starting to look to the future with hope and peace in my heart. Then: diagnosed with breast cancer—back on my knees again. Are you kidding me? You have to be kidding me. Lie in bed at night and think, No fucking way. Not really something you are prepared for; not something you can believe is happening to you.

First off: deal with just the shock of hearing the words, “You have breast cancer.” So shocked I don’t even know what to ask the doctor. Call back 30 minutes later.

“What kind?”

Invasive ductal carcinoma (that does not even sound good: invasive).

“How big?”

1.2 cm.

“What else?”

Estrogen positive; progesterone positive; HER2 negative; Ki-67 =11.

What? Mumbo jumbo—rush home to the Internet. Search, search, search.

Appointment with the surgeon, then trying to make the best decision regarding lumpectomy or mastectomy.

Lumpectomy. Then meet with the medical oncologist; still more decisions. Chemo. No chemo. More waiting. More tests. Each step trying to make educated decisions, but cannot relieve the fear that it might come back.

Okay, chemo followed by 10 years of hormone treatment and six weeks of radiation. Okay—made it thru first chemo. Feeling better emotionally than I have ever felt. Start writing, feeling that I am exactly where I am supposed to be for the first time in my life.

Then—boom. My goats get attacked by my neighbor’s dog. These are not just any goats; I bottle raised three of them since they were a few days old. They are my babies—my buddies— my joy. They have given me so much comfort and peace during this year. I like nothing better than to sit on my front porch and watch them. I like the simple things in life. But now I am at the vets with my four goats torn to shreds. Poncho can’t be saved. The other three are hanging on. I got to hold Poncho’s head and kiss him goodbye as he took his last breath.

I was so angry. I screamed, “First my ex, then breast cancer, now this. What the fuck?!” Part of my joy now gone. My heart breaking, I turn to the remaining three—Javier, Tupelo, and Honey Badger—and start trying to save them. My wonderful friend Kim, an angel right here on earth, comes to my rescue and shelters my babies and me at her barn. Waiting, praying, and sleeping in the stall with my boys. So far the remaining boys are progressing well. Two are up and aggravating everyone in sight. Still waiting on Honey Badger to join them. This year is teaching me not to take anything for granted because you never know what can and will happen tomorrow. One day at a time is as far ahead as I can look.

Well, it’s gone. My hair. I am bald. Really doesn’t feel that bad. In fact, I think I really like it. My scalp feels like it is finally breathing. It is tingling and I am enjoying experiencing all of the sensory overload. Just think, covered by all that hair forever and now exposed. I know I will have to be careful in the sun but it is fun feeling the coolness. It is like having my own personal breeze right on top of my head. Sylvia and Cheryl rubbed my old bald head yesterday and I have never felt anything like it. It was wonderful.

When I got home last night the only dog that seemed to notice was my sensitive guy, Zipper. I looked at him and he looked at me: ears up, head cocked to the side. “Hey, Zipper.” He looked and just focused on my head with a very puzzled look. “Hi, Zipper.” This time he seemed to relax and I think I saw him smile.

I washed my hands this morning and ran the cool water over my head. Wow – amazing. I think inside I am feeling very much like all those cells and nerve endings on the top of my head. Every experience new, exciting – and good. I know that just like with the little cells on my head, I need to be careful. I need to watch for things that might harm me, but not hide under a cap or scarf. Just put it out there for the world to see.

  It is starting. I feel it. The tingling, itching, and tenderness. The hair! Eyebrows and eyelashes, also.

I have decided to meet this one head on. I’m going to Marietta tonight, to an African hair shop owned by my friend Ramata. We will cut all of my hair and she will make me dreads. I have always wanted dreads, but how does a white redneck country girl get away with wearing dreads in the South?

Somehow this unexpected battle with cancer has either given me courage I never knew I had or has just brought out the “Screw you, it’s my life” attitude. Having spent most of my life trying to please and get approval from others, I often feel overwhelmed with this new sense of self.

Don’t think the folks will be fans of the dreads, but they have not been fans of a lot of the choices I have made in my life. One in particular I am sure they see as a choice, but it isn’t and never was; it is just who I am. A lesbian. Not a choice but born this way. When I dream, I never dream of men. I was naive enough to think, “My folks love me today; what difference should it make if they know?” So I told them. Funny thing: it did make a difference. Know what? It wasn’t me that changed. I was the same person, with the same feelings and the same love for them that I had before and after I told my truth. I did not change, but something did.

So, like the changes happening with my hair, I am sure we will not see eye to eye but we will avoid some of the hard parts, because being a part of each other’s lives means something to us. I want them to accept and love me for who I am, so I have to do the same for them. Reflect back to them love and acceptance. I do love them, my mom and pops.

I saw a warrior stumbling today, armor all but removed. It was hard, sad, and scary. If you are around my age or older with my sense of humor, you probably watched The Carol Burnett Show. I loved that show. A favorite of mine was the Tim Conway character who shuffled his feet everywhere. He could not even lift his feet enough to step on a rug. It was funny and Conway made you laugh.

The warrior I see is walking almost like that character and it isn’t funny. He is an older gentleman and one of the technicians is walking beside him, holding his hand. The old man has an oxygen tank in a bag that he carries over his shoulder. The tech gets him to the first sofa in the waiting room. The man struggles to sit on the sofa; he finally makes it and leans forward, fighting to breathe. His wife sits beside him and gently pats his hand.

I look over at him and see how white he looks. I see his face; I have never seen that color of white before. I turn away because tears are filling my eyes. I shake my head. This shit is getting too real. People die from this, from cancer, every single day. It is really just beginning to sink in for me. I think I have been working through the shock and going through the motions. But now it is becoming real.

I am called for my appointment. I am becoming more warrior-like with each new visit to the clinic. I laugh and talk to the techs and nurses. I tease my doctor when he walks in the room, winks and says, “You still have your hair!”

“Come on, man,” I say.

He responds, “I must not have given you enough.”

I love this banter but we soon get more serious and talk about my treatments. As I walk back into the waiting room I can see an ambulance, lights blinking, outside the front door. I look toward the sofa – he isn’t there. I look at Lorene. They are taking him to the hospital. Godspeed, Warrior Brother.

June 7, 2013

I meet my angel today on the way to the medical oncologist. My friend Lorene picks me up so she can take me to my appointment. She has been quite an angel herself. She is an ex who is now more like family. She has cooked, cleaned, cared for, and pampered me since I was diagnosed. I have had several relationships throughout my life and have always felt that if I loved you, just because we break up it doesn’t mean that I don’t still love you. Lorene has been a complete demonstration of that reflected back at me.

It has been hard for me to understand. I actually had to call her and ask why she was doing these kind things for me. Know what she said? Because of who you are. What??? What does that mean??? I have never been able to see the things in me that other people see. I have focused on others. When you meet me I will ask a million questions about you, so you never really get to see me. I focus on you and most people seem to be happy with the way that works.

I jump in Lorene’s Tribute and off we go. Leave my work driveway and turn left onto College Station Road, a rather busy road in Athens, GA.

As soon as we turn, we see him lumbering onto the shoulder of the road. Lorene looks at me with panic in her eyes. “We can’t,” I say. “He is a snapping turtle – we don’t have anything.” But we are already on the side of the road and I find myself running back toward the monster with a roll of plastic fencing in my hands.

What the hell am I doing? Traffic whizzing by on the four-lane road and there he is. He decides to make a run for it and so do I. Running with the fencing under one arm and the other arm over my head, trying to get the drivers’ attention. Oh God, please don’t hit him—I am so close.

He has made it across the shoulder and into the first lane. I call some guys from work – Come help! Just then two women in a white van stop to help shield my new nemesis. Then we have him, me with my fencing, one lady with a white umbrella. I try to shove him with the fence roll, but he lunges and bites. I try putting the fencing on his shell and pushing him backwards, anything to get this fool and us out of the middle of traffic. It is lunchtime in Athens, and we are on a main road leading to the eating places.

I try again, and again he snaps and grabs the fence roll. This is not working. Lorene is directing traffic, while the two other animal nuts and I are in the middle of the road, waving our fencing and umbrella. Call the guys again, and finally I see them. As Troy and John arrive, another vehicle pulls up. They tell us, “You have to grab it by the tail.” They are finally able to do just that and there he goes. Head facing down, mouth open as they run back across the road. They will put him in the river and that will be that.

Sigh of relief from all the rescuers, who’ll go home with funny stories to tell. We all jump back in our vehicles to resume our day. My faith in the goodness of humanity is restored. But how can this mean, nasty ass snapping turtle be my angel of the day? As I think about valiantly trying to save this monster, my mind drifts to my most recent significant other. The one who, on my birthday, returned everything I had given her with the words, “Sorry this didn’t work out, but I hope you have a happy birthday anyway . . . Excuse me – What?? Just like that turtle that I was trying to help: Given half a chance, he would have taken a chunk out of me. She had the chance, and she did. With her shell tightly secured around herself, she whipped around and took not only a huge chunk of my heart but also a huge chunk out of who and what I am. I am a helper, a rescuer. I will put myself out there, put myself in danger just trying to help. Just trying to help you get to the other side of the road – Damn it!

I was able to help the turtle and that feels good. I was not able to help my ex because she really did not want my help . . . but I can help myself. Really that is about all I can do: take care of myself. I will always be a helper, a rescuer, but hopefully I have learned: Pick it up by the tail and hold it our away from your body so you don’t get bitten.