Hair, God shows up as an old Yankee and Coping

This week was the first in a string of three work trips between now and end of October. My primary clients and colleagues were at the conference this week. I had to go, in part to make an appearance, assure people who pay me that I’m still working; to fight back against this rip tide that keeps eroding what I’ve known as a life.

I arrived Monday night and went straight to my room avoiding the “hospitality suite” where I knew all the “important” people would be, where networking determines my livelihood. Tuesday morning I got up not very early but with time to get to the 8:00 AM session where I was to assist one of my clients with facilitation.  

There’s nothing in this world that could have prepared me for what would happen that day.

Reason #1: God blessed me with nice hair. It’s been my security feature since about age 13. I’ve never taken it for granted because I compare my hair to my other features and feel thankful.

Reason #2: I’m not shy or whimpy. I enjoy an audacity and courage in unfamiliar settings and among strangers. I find pleasure in extending my hand to those who appear shy, stuck-up or just plain lost.

Reason #3: I don’t have cancer anymore. Why is it increasingly controlling my life?

It started in the shower Tuesday morning and by the time I had no choice but to walk out the door, over half of my hair fell out. Just like that. The doctor had said, “by the second treatment...”

I thought that meant after the second treatment.

With my hand shaking I texted Michelle - hair dresser/cousin. I don’t know what I thought she could do, but she did have some comforting words and suggestions.

Did anyone notice? I have no idea but word must have spread that I’m dying. People that know who I am either diverted eye contact or cocked their head and said, “Hiiiiii, how are you? You look good,” before quickly moving on.

This is not what people say to me. This is a comment for embalmed relatives lying in a casket. 

By Noon I was intent on hiding out in my room for the remainder of the day and then God stopped me outside the meeting room. He shows up in the strangest forms.

In half-a-day I’d already discerned that the new state forester from up North - state foresters are politically appointed bureaucrats that oversee state owned lands and policy -  has obviously been shaped by years in the North Woods making pulp and paper and that the others didn’t like him much because he’s a tell-it-like-it-is, conservative Yankee who gives not one shit about political correctness. 

He spoke to me in the hallway. His head is mostly bald, he has nice teeth, and his eyes are bright behind large wire rimmed glasses. He wears suspenders while the others wear sports jackets. I can’t remember what he said about forest markets, but somehow he ended up volunteering that he’d beat back lymphoma for the second time a few years back; he’d survived “red devil” chemo twice. “The lymphoma will get me eventually. I know it,” he said still smiling.

“I’ve got one behind me and five to go,” I offered.

The seemingly least likely person in the crowd of 200 found me and brought me into his confidence. Over the course of two days worth of coffee breaks he shared with a sadness brought about by true fondness that his wife, a healthy, loving grandmother, had died 18-months ago.

She had a rare form of cervical cancer; there were no protocols for treatment. It’s a one in a million strain of cancer. She died 34 days after diagnosis. “You listen to those doctors. They know; they’ve done tons of trials. You gotta take the chemo; all of it. You ain’t got no choice. You have a kid. You gotta think in terms of ten years out, not no longer. Take all the chemo; don’t stop no matter how much it hurts!”

At the last session he came up again and handed me a business card with his personal cell phone hand written out. “Listen, I take people on now. That’s what I do. That’s what I’m doing with what time I got left. I walk along beside them.  You call me anytime - day or night.”

I don’t know yet how to deal with this new me - holding up in hotel rooms, sitting alone in the back, leaving the dinner early, feeling like a pariah. I sure hope a wig will help.

My wigs come in on Friday, I hope. 

I’m starting to see this all is a sort of fasting of life. I may not be giving up food, but I think this forced giving up of all that I know as normal may be the equivalent of getting to a place where all you can hear is the still, small voice of God - in whatever form he takes. I’ve asked him not to come in the form of a small Asian woman, like the Holy Spirit character in the book The Shack - I hated that book.

My next treatment is September 27. They’ve promised to dial back the “support” drugs but not the chemo. I won’t lie. I’m scared, but going to do it anyway. Like my new friend from the Great North Woods says, “I ain’t got no choice.”

Despair not a choice but Neulasta is hell

A perky woman from the hospital told me on Friday that I might feel better by Sunday. I had the first deluge of drugs aimed at simultaneously killing me and saving me on Monday.

I went into this week expecting the best but preparing for the worst  - so I thought. Nothing could have prepared me for this week. If you’ve never really been sick; thank God. If you’ve ever really been sick, you know the way despair will hang around like a vulture when it takes all you have to turn over or get up.

I went into the hospital on Tuesday and for about five hours drugs, ranging from anti-nausea to steroids to a chemo cocktail, were dripped or flushed into an intravenous port feeding into a main artery. I did okay in spite of not having any sleep the night before due to the oral steroid.

I got home that afternoon and, as directed, took more steroids and anti-nausea drugs. Within an hour, the same piercing headache I’d felt that morning came back. I went to bed around 7:00 PM for another long, sleepless night.

Wednesday I got up feeling lousy but I was able to push through, taking Maggie to school and making my way to the hospital for my first shot of Neulasta (see description below). It’s basically a drug derived from e. coli that boosts white blood cells so a person won’t die from infection while receiving large doses of chemo. 

My next stop was the AT&T store to replace a modem blown out by lightening the day before. Another first for me this week was witnessing a basketball sized bundle of fire outside my window accompanied by a very loud crack. I’ve yet to draw a meaningful connection between that oddity and the hell I would enter Wednesday night.

I did manage to sleep Wednesday night in two hour blocks broken by pain, complete from my head to toes leaving me unable to do anything but literally pray one simple sentence: Dear God, please help me.

Thursday is a blur. I just knew Friday would be better. It was worse. Finally, by late evening I was sitting up for longer spells, but the crushing headache did not relent until about 10:00 AM Saturday morning. The nausea and fatigue are parked for the day again, it seems.

Yes, I’ve taken Tylenol at intervals probably not completely safe, but it does give a reprieve for a couple hours allowing sleep. I turned down more narcotics because I know what those do to me.

Can I handle being incapacitated like this every month? I don’t even yet know how many days before I can actually do something. Is there a greater cure coming out of this  literal poisoning? 

Since this all began in June I’ve pressed past a sense of going backwards, a fear of never getting to another level, remaining stuck right here. This week I’ve had nothing to press with. It’s our most hateful demon’s delight to have us so close to the breaking point, so devoid of any signs that better days might be ahead that we fall into despair. 

Despair is what existential philosopher Soren Kierkegarrd called the true “sickness unto death.” He said that we fall into despair when we fail to align with God’s plan for our lives.

And what is the plan we ask, especially amid blinding pain whether emotional, physical or spiritual? I think the plan is abandonment to his care each step. It’s trust. It’s refusal to give up no matter what. It’s the same plan we embraced right after that terrible day in September ten years ago now. 

It made no sense. All seemed changed for the worse for ever. Maybe it has, but at the heart of American spirit, and yes excellence, is that ridiculous perseverance. 

But again why, we ask? Why are we any different? The answer is simple. We are free to choose. I can choose despair or hope. God nor anyone else forces either on me. But my choice will determine the outcome entirely.

It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery. Galatians 5:1

Neulasta® (pegfilgrastim) is a covalent conjugate of recombinant methionyl human G-CSF (Filgrastim) and monomethoxypolyethylene glycol. Filgrastim is a water-soluble 175 amino acid protein with a molecular weight of approximately 19 kilodaltons (kD). Filgrastim is obtained from the bacterial fermentation of a strain of Escherichia coli transformed with a genetically engineered plasmid containing the human G-CSF gene. To produce pegfilgrastim, a 20 kD monomethoxypolyethylene glycol molecule is covalently bound to the N-terminal methionyl residue of Filgrastim. The average molecular weight of pegfilgrastim is approximately 39 kD.