Poetic License

Or not. It’s weird to feel protective of other people’s feelings. It’s odd to hold my feelings so close to the chest (haha….cancer is in the chest…get it?). If I didn’t have a little dark humor about this, it might kill me. Hell, it might kill me anyway. Or it might not. I might get to be an old lady!

But cancer, as I learned from watching it kill my dad, is unpredictable. He was given 6 months to live after his cancer was discovered. He had a lingering, hacking cough after he got the flu one winter. He wasn’t one to go to doctors, but he finally relented when he began to spit blood. He thought he had pneumonia (something his brother Randolph died of at 14; his brother Earnest died at 4 from bronchitis). It was cancer, and it was throughout his lungs. (His father died at the age of 53 from cancer of the penis and inguinal glands, something I learned recently from Ancestry.) The doctors operated on Dad and found more than they bargained for. He had a lung and a half removed, and we fully expected that if chemo bought him any time, it would just be a little. Thirty years of smoking and plenty more years of being exposed to asbestos on construction sites had given my father a death sentence.

We packed up house and moved from Houston back to south Georgia so he could be near his mother and remaining siblings–two brothers and a sister. (Two sisters had passed away–both of stomach cancer.) It was traumatic for me, because not only was my father dying but I was taken out of the only environment I knew, all my friends, and my older sister. My mother was away from her older children and all of her many friends.

The doctors were free with the morphine for Dad, because again, he was supposed to be dying. Instead, he got addicted and eventually started doctor shopping, taking far more morphine than he should have been. He was an alcoholic when I was a baby but gave it up after he started bleeding from the esophagus. He felt he had no reason to give up morphine, because he was dying!

My dad had always had a violent and unpredictable temper. The morphine made it worse. It was almost a blessing when he was unconscious from the drugs. There would be a little peace in the house. One day, my sister and I went to the grocery store with Mom while Dad was home with his mother (who was 97). It seemed like any other day. Mom chatted with everyone she met (I didn’t get that unselfconscious, extraverted gene). When we got home, though, everything had changed.

My grandmother was lying in the floor in the hall bathroom. She had slipped and fallen, landing on her hip on the handle of our bathroom scale. The handle had caved in (and I think my mother still had that dented scale until she went into a nursing home herself). We called an ambulance and got my grandmother to the hospital. Her hip was broken. Dad had been sitting on the toilet in the bathroom on the opposite side of the wall from the hall bath. He was passed out, with a syringe in his leg. My grandmother died two days later in the hospital. Even that didn’t get my father to give up his morphine.

Not long after that, he became increasingly violent. One night, he was beating my mother in their bathroom. I ran in and pulled him off of her. He went and got a baseball bat so he could “teach me a lesson”. Mom got between us. I ran for the neighbor across the street, who was a lawyer. He called the police. My dad, as he had often done when trying to defend himself to the police (because we’d had to call the police on him many times in Houston), mussed his hair and clothes and tried to say it was me who was after him. I was a skinny thing – maybe 110 lbs at that time. The police didn’t believe him.

The police got us out of there that night, but Dad wouldn’t let my little sister go. She was so young. It took 6 months of fighting through the courts to get her away from him. I don’t know what all took place in that 6 months, but when she was finally with us, we would all sleep in one big room — my mother, my sister, and me. She would have night terrors almost every night, and they were frightening. She has a lot of problems now and began to run with a criminal element. She sits in a prison in Georgia as I write this.

My father decided to write his life story for the local paper. It was full of lies. Horrible lies. He garnered everyone’s sympathy (family members included) and said how awful it was that my mother left him because he had cancer. It was the worst thing he ever put us through. No mention in there of the times he beat my brothers bloody. No mention of beating my mother from the wedding night on. And certainly no mention of his morphine fueled rages. It made it so hard to love him. It made it so hard to mourn him when he died 7 years after his diagnosis. Some family members believed what he wrote and treated Mom terribly for the rest of her life.

I don’t know if he was bipolar (probably) or if he had cancer mets in his brain (maybe). All I know is that my mother suffered. She divorced him and went to work in a panty factory in Fitzgerald. She worked long days, slaving to “make production”. She was ill all the time (later we discovered she had lupus). She went through some horrible bleeding before her hysterectomy and was always anemic. But she worked hard to put a roof over our heads and food on the table. People often stared at her because of what they read in the paper, but gradually, she came through it. People saw that she was a good person. We were in church 3 times a week. She worked hard. I worked hard. Penny endured her night terrors and anxiety. Mom finally found a little peace and quiet for herself and lived to 76, when heart disease killed her. Dad died at age 59.

So, you’ll forgive me if I get a little morose from time to time. I’m a realist. Yes, there are great therapies now for breast cancer, and I’m praying they work for me. I’m not ready to go. But I got a call this week from my surgeon. I was a little surprised, because I won’t really be seeing her much until after I get through chemo. I guess she is heading up the team, though. She called and left me a message while I was napping after having my medi-port implanted that morning. The message said she wanted to go over the results from my recent breast MRI and that she’d “really love to talk to (me)”. I was hoping it was good!

I called her back. She asked if the oncologist had talked to me about the MRI results. I told her she had and that I also had a copy.

“Well, then you know about the lymph node we saw.”

“Yes.” It was about a centimeter-and-a-half in size.

She told me that she and Dr. X had presented my case to the tumor board that week. That is done for complex cases to get input and opinions from the entire team: the surgeon, radiologist, interventional radiologist, oncologist, etc. Everyone who will be involved in my care at some point was there, plus other experts.

“I’m concerned that we saw this on the MRI but no axillary lymph nodes on the initial tests. That’s unusual,” she said. “This node is between your pectoralis major and pectoralis minor muscles, just sandwiched in there. We are going to want to biopsy that at some point. I know you have a PET scan coming up next week. If the node lights up, we will definitely get that biopsy scheduled.”

Stunned silence on my end, then, “So that will change things a little, yes? But it’s still a breast lymph node?”

She said, “Well, normally breast cancer goes to the nodes under the arm first. I’m concerned that this is where we’re seeing a change.”

She paused, “We don’t want to say stage IV until we see the results of the PET scan.”

Stage wha—?? I was silent.

“You’re seeing Dr. X next week, right?”

“Yes, after the PET scan.”

“Okay. She will give you more information then, but I think you need to know that if this lymph node shows cancer, I will take out all of your lymph nodes under the right arm when I operate.”

That gives me a 40% chance of having lymphedema in my dominant arm, which means physical and occupational therapy, compression sleeves, and probably pain. That’s the worst part about cancer. You have to take strong drugs to manage the pain, and sometimes they don’t even help. When that happens, you just want to sleep. I understand my father a lot better now.

When I first got diagnosed in mid-April (just a couple of weeks ago), I couldn’t feel any lymph nodes. Now I can feel the big one in my chest wall. The HER-2/neu oncogene is like gasoline on a wildfire. It tells all the little sparks to blossom into a conflagration. I want to get started on my treatment, damn it! I want something to start putting out the fire. Trouble is, every test shows something even more concerning.

My best friend asked me, “Are you pissed off yet?”

Oh, bestie, I’m SO angry. How many doctors did I see last year to try and figure out what was going on with me?? If they had listened to me, if they hadn’t just seen a fat girl who was losing weight — oh, good for you! Good job! — they might have run some tests that would have allowed us to catch this really early. Last May, I had just seen my gastroenterologist because I had no appetite and the nausea was bad. I had testing done via colonoscopy and endoscopy. He removed 9 polyps from my stomach and another 8 or 9 from my colon. No precancerous ones this time (unlike the previous time, when I had 3 precancerous lesions removed). I saw my endocrinologist, who said my levels of thyroid hormone were off. She lowered the dosage. I saw my internist. Again, he was just happy that I had lost weight and seemed to not hear me when I said, “But I’m not TRYING to lose weight.” My prediabetes went away, which was good, but I knew something was wrong.

I got so depressed over the winter. My right shoulder was bothering me a lot, so I quit playing with the band I was in. I had an X-ray and found out it was only a little arthritis (but now I wonder if the cancer was causing me pain). I took no pleasure in eating. I was tired all the time. Part of me just wanted to stop the world so I could get off of it. By February 1, I had decided to sign up for a 5K walk/run (which was supposed to take place today) and push myself out of the house. I wanted life to feel better, since the doctors thought the pain, etc., was all in my head.

I wish to God they had been right. I wish I were out running today. I wish, I wish.

That’s how I’m feeling today. How are you?

Namaste, J