Maybe you think my last post was full of darkness and depression – but really it was not.  I have learned to live my life in the balance between the two worlds of depression and joy.  I have spent my whole life dealing with these issues.  I am comfortable with the two.  I have learned that my depressions offer me a true blessing.  I would never have learned the spiritual lessons that I have learned without the darkness.  That is a time of true faith – just believing that as long as I continue walking I will come out on the other side.  Those times are hard times but they also amplify the joy and happiness once I reach the other side.

I mentioned the word faith.  Faith – what is it?  I know the definition and I am sure you do too.  But faith to me is just putting one foot in front of the other.  I have no idea what will happen along this journey, but I do know that if I just keep walking the path, the way will open.  Faith is the reason I can put my armor on every 21 days and face the chemo and the sickness.  Just do what is in front of me and keep walking.

Faith also brings up the subject of God and religion.  I always say I am not religious but I am spiritual.  Religion is a strange thing to me.  So many people do things in the name of religion or God that I just do not understand.  The God or Spirit I believe in is loving, kind, accepting, understanding, and gentle.

I have two sisters, one older, one younger.  I am right in the middle, with about 6 ½ to 7 years separating me from both of my sisters.  We all grew up with the same parents, same house, same environment, and same religion.  My older sister has been very caring and supportive during my battle with cancer.  My younger sister has yet to call me or send me a card.  Her family is deeply religious and since I am gay they do not have anything to do with me.  It has been very hurtful, but if the situation were reversed, I would be there for her.  So I cannot believe in a God or a religion like that. I choose to believe, but in what I am not sure.  I do not have to have all the answers; I just need to have faith and believe.

As I was sitting on the front porch tonight, all these thoughts were flooding my brain.  I wondered what I would miss the most if I died.  And at that very moment, I was listening to the frogs and cicadas, watching the lightning bugs, feeling the wind on my face, looking at the goats and dogs, feeling at peace with myself and with nature – and I knew that is what I would miss.  My own little piece of heaven.  That, to me, is God.  I read a quote by Frank Lloyd Wright that pretty much sums it up for me: “I believe in God, only I spell it Nature.”

I am beginning to renew my mind and spirit and polish my armor, for I have a battle starting next Tuesday.  The mind, body, and spirit must all be well rested and ready to walk in faith.

The weekends are the hardest for me.  Even though I have been overwhelmed with the outpouring of kindness shown toward me during this time, it is on the weekends when I am by myself that I miss being in a relationship.  It is hard to try and pull all this stuff together by myself.  It is during the early morning hours when I cannot sleep that my mind starts pulling me toward the darkness.  I have struggled with depression my whole life.  There are times when I fall so deep into the dark hole that it is hard to see even the smallest pinpoint of light.  I have had people tell me that it is the dark night of the soul.  It is never easy to walk through this time–but walk I must.  I cannot afford to get pulled under forever.

This week is a time to prepare my armor for battle.  I need to get all the people and all the material things together that I will need to face chemo on July 9th.  Damn, it seems like I just did this, but it is time again.  Gather all the things that must be gathered to make it through that week.  It is easy to say “live one day at a time,” but I already dread the chemo.  I dread it because of the sickness but I realize that with each treatment I am one step closer to being finished.  Now that will be a time to celebrate.

So why is it that during this time, I feel so alone? I have faced many battles on my own, and most of the time I am fine dealing with and making decisions during this battle with cancer.  But sometimes, in the stillness of my room, I feel tired, scared, unprepared, and unsure of myself.  I think the world sees a brave warrior walking each step of this battle, but behind the armor it is just me.  Just me.

It would be so nice to have someone here to hold and comfort me during these times.  Someone who I could borrow a little strength from every now and then.  Someone to help polish the armor and secure it around my body before battle.  But that is not what I have at this time in my life.  I have made lots of poor decisions as far as relationships go, and right now–today–this is where I find myself.  Fighting the battle of my life, surrounded by friends, family, and my loving animals.  It has to be enough. It is enough.

Last night was the first night I have spent alone since my chemo on June 18th.  It felt good to be alone in my little house but also a little unsettling.  It is during these few days that I seem to have the hardest time emotionally.  The chemo and the sickness behind me–another battle won–now it is time to relax and prepare for battle again.

The chemo treatments are 21 days apart.  It seems like a long time but by the time you get over being sick and fatigued there is only a week to go before the next treatment.  It seems odd, but this is the time when “it” seems real.  In the heat of the battle, there really isn’t time to think.  Now, the mind starts thinking: You have cancer. What does it mean? Will it come back? The armor is off and in need of repair.  This is a vulnerable time.

Seems odd, huh?  You would think that it would be during the chemo and sickness that I would feel that vulnerability.  But you see, that is when the armor is at its strongest.  The time that I am ready for the battle.   This is a battle of another kind.  A battle against myself.  A struggle between depression and joy, both of which I know well.

When my goats were attacked by the dogs, I cried to Kim, Lorene, and Sylvia that I had lost my joy.  Sitting on my porch watching those crazy goats brings me a lot of joy.  I am just a country girl; I like being outside and watching the world.  Not the world of traffic and people hurrying by but the world of nature–the birds, the bugs, the rabbits, the squirrels–just all the critters that surround me in my little world.  Sitting in the swing on the porch, being surrounded by the things I love and watching the goats that I bottle-fed from a day old: That brings me joy deep down in my soul.

The night they were attacked and we took them back to the barn I said, “I have lost my joy.”  But three of the four survived and they are back home with me now. They have changed and so have I.  All three have suffered injuries; Javier limps, Tupelo has a hole across the bridge of his nose, and Honey Badger still has wounds and does not have the use of one of his legs.

But this morning, I sat on the porch and watched the three of them in the yard.  As they hobbled about, I again felt that joy.  Not the same as before, because now we all have been changed forever. But still a joy.  We are here and we are alive and we are together. That brings me joy.

So my life has been changed forever.  Hearing the words “You have cancer” changed my life.  Took away a little of the joy.  But I am still here and I know that the joy will return.  Might not be the same, but it will return.  I do believe that it takes going through darkness to know what joy really is.  So I will work through this upcoming week and prepare not only my body armor but also my mind, heart, and soul for the next test.

Wow! What an amazing day! With all the wonderful things that happened today it almost feels like a dream. I had to go back to the cancer clinic for an appointment to meet my survivorship counselor, recheck my WBC count, and maybe get another WBC-stimulating shot. The thing about the Neupogen or Neulasta injection is that the side effects are not pleasant–a lot of bone and joint pain. Since I got the Neupogen yesterday I didn’t get a lot of sleep last night due to pain in my lower back and hips. I was really hoping that the WBC count would be up today and I would not need another injection.

My two wonder exes, Lorene and Sylvia, decided to go with me today. These two are incredible. They have been my greatest supporters and the most wonderful caretakers from the very beginning of this journey. They have seen me when the armor has been stripped completely away and have held me and comforted me through each of these vulnerable moments. The love I have for them is beyond words.

My appointment is at 9 this morning and we get there in the nick of time. Of course, as usual, the wait to be called back is about an hour. I have learned that that is the way it goes, so I use the time to write or talk to people, like the couple I met yesterday. Lorene, Sylvia, and I spend time laughing and catching up.

I am in the process of catching Sylvia up on the goats and other things when I see the couple from yesterday walk in. I could not wait to go over and see them. I walk up and they both smile. He is there getting prepped for his first chemo today. He says, “I was hoping I would see you today. I told everyone about you yesterday. I told them I met an angel.”

I looked at him and smiled and said, “You know what? I’ve met a lot of angels since being diagnosed.” He said, “Me, too.” I replied, “I think that our eyes have just been opened now and we are just aware.” His wife looked at me and nodded. He said, “I even told my ducks about you” and smiled.

We had to stop there because they were being called to the back. I looked at him, “Take care–good luck.” My heart hurts for them. The road is long and filled with ruts and holes; I sure hope it can be an easy journey for him. Just be open and see what the universe brings my way. This journey has not been easy but it has been worth it. I had no idea how much I could learn, how much I could care, and how much I love this sweet world until this journey began for me.

I get called for my appointment and Sylvia, Lorene, and I meet with the counselor. This is just what I need. Some help to put all the pieces together; some help to get me through the treatment process and into the next stage of being a survivor of breast cancer.

After the session, we head to the lab for blood to be taken so we will know the WBC count and if I need another injection. I am sitting in the lab, Sylvia and Lorene are in the hall behind me. I see the Supreme Court decision on Prop 8–I hand my iPhone to them–we are all smiles. Sylvia says, “Now we can get married.” Lorene says, “Not all three of us” and we all start laughing. It is a good day. Joy in my heart. I cannot believe it.

The tech comes over to draw blood and we wait. She returns, smiles. WBC normal–no injection. Wow, really? Such a relief. I knew that cheerleading skirt was good for something. We check out, everything still on schedule. Next chemo July 9th.

Not long after leaving the clinic we get the news about the Supreme Court’s decision on DOMA. I am overjoyed. I had fallen in love with Edie ever since watching Edie and Thea: A Very Long Engagement. A woman with such love, courage and strength–a true inspiration.

So today I feel like I am sitting on top of the world. It feels good but I know not to get comfortable. Life has to be lived one moment at the time. Every precious moment is worth living, the good and the bad, because there are angels everywhere. I just need to be aware every minute of my life.

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.