The Mainland Spotted

Five months ago it was as if strangers put me in a small boat and shoved me off from a familiar shore into unchartered waters. There have certainly been harbors, friendly vessels, and even a “message in a bottle,” but ultimately, I found the boat built with room only for me and, once I asked, the Holy Trinity.

For many this makes little sense. Before this forced trip, I too only had an intellectual understanding of the notion that God is three-in-one: Father, Son and Holy Spirit. But, all three have shown up for me in such unique ways based on my needs moment-by-moment, and there have been many.

None of us would ever volunteer to be peeled down layer by layer to near nothing, yet some powerful things can happen in those scary, helpless, solitary places. And most miraculous of all, we can survive and come back, hopefully better.

This week I felt God himself answered a pleading, desperate prayer lovingly and definitively.

When I had a lumpectomy on August 9, my body, mind and spirit were all very strong, much more so than I realized. Between September 27 and November 1, I received four doses of chemotherapy (two included the drug Taxotere; all contained Adriamycin and Cytoxin). In addition, I have received many support drugs designed to enable the patient to endure those other drugs strong enough to kill cancer cells. For me, every drug contains both a promise and a cost. Nothing I’ve taken has come without some order of harsh side effect. I’m in the 80^th percentile for experienced side effects to drugs.

After that last treatment, something shifted within me. It was more than the five intense days of being unable to function for all practical purposes. From the moment they plugged me in that day, my body was saying, “I need to heal, now!”

This created conflict in my mind, which simultaneously wanted so badly for the pain and general sickness to stop and to complete treatment as prescribed by my oncologist. In the mix too was my spirit – I no longer had peace about my treatment.

So, for the last couple of weeks, I’ve prayed without ceasing - “Please God don’t let me make a mistake; show me clearly what is right.”

The bread crumbs, as I call them, began to show up. Each crumb seemed to confirm that my body might be right. Yet, peace evaded me. I couldn’t get comfortable one way or the other. A nagging thought lingered, “what will you tell Maggie if it comes back and you didn’t do everything possible?”

A week ago I went into the hospital to have my blood tested (they do this weekly) and meet with an assistant to the oncologist. My blood was okay. Not great, but good enough to do chemo in seven days. Yet, I felt so washed out; an indescribable bad that I had no reference point for in my past. I asked her my burning question – “Would I be foolish to stop chemo at this point?”

She was very affirming and even indicated that she understood about the mind, body and spirit, but asked that I not make a decision before my next scheduled treatment on November 15. I agreed.

Yesterday, my neutrophils had tanked; the hemoglobin revealed anemia. My body had been talking and my mind knew that I simply had no fight left in me. The wise oncologist began writing carefully as he reviewed my individual cancer case using arrows, lines and brackets to clarify the words and numbers. The most important information was the line that showed treatments received and those yet proposed along with the numbers.

Post surgery with no further treatment I had a predicted 70 percent chance of remaining breast cancer free. The chemo plan was designed to give me a “lucky” 13 additional percentage points – 83 percent chance of no future breast cancer. Based on the treatments I’ve received, my current number is 80.5 percent, best guess.

To continue with the new drug (Taxol) might give me between 2 and 3 points, based on the averages. It might not give me any additional assurances yet expose me to permanent neuropathy.

I asked him tentatively, “Would I be foolish to stop now?”

He began to talk and I began to cry. Words like proud, very remarkable, unique, understanding were not what I expected. Knowing this borders on the dramatic – it felt like I got out of prison yesterday.

Radiation is yet to come. I’ll be reintegrating and detoxifying for an indeterminate time because as the mantra at the hospital goes, “everybody’s different.”

This has all been so much harder than I ever imagined; so much harder than anything I’ve ever faced. And while I’ve never considered myself a victim or anything less than blessed, if nothing else just for having the good fortune of being born in America - my life has not been charmed by any reasonable criteria. And, it’s not over. My future in terms of work, where we’ll live and how we’ll live is blank right now. Yet, I feel so thankful for all of this because it’s allowed me to experience a goodness and generosity in people not known prior, and, dare I say, closeness to the God of this universe impossible to put in words.

New Treatment Plan

On Wednesday of this week, eight days after my last “treatment”, I went to the YMCA near Maggie’s school. I’d joined a few weeks ago but not yet attended. I pushed out 20 minutes on something called a “climb machine.”

It looked like the least difficult thing in there. It literally took all I had to stay on for 20 minutes. I left with my hat pulled low on the verge of tears. Just over two months ago I played tennis two or three times a week, stretched out every morning and jogged at least two mornings a week for 30 - plus minutes and really did whatever the heck I wanted. I also slept like a baby for seven straight hours every night. I never had a headache or even felt physically bad for any stretch of time.

I came to trust that my good health and general lack of life problems was the pay- off for really clean living and very close relationship with God. Then I learned in June that probably since about 2003 a cancer had been growing in my body.

Today, I went to a spin class and rode at a respectable pace for 35 minutes. I felt like Rocky.

Yesterday, I had my blood tested prior to a visit with the Oncologist. My white blood cells were at a 1. Normal is 3 to 10. On September 27 the numbers had been 18 – under the influence of Neulasta. My weakness was explained.

What’s so very difficult for me about all this is that my already fairly simple life has been reduced to a sliver. Until today, I’d been increasingly sad about this fact and fighting against this straight jacket called “treatment.”

I lay awake in bed at night, unless of course I take something to knock myself out, vacillating between being hot and cold as a result of the assault Taxotere has levied against my ovaries, and think – “I’m not sick. I’m “chemoed”. I’m suffering from an overdose of drugs.”

It’s an extreme cognitive dissonance created between my adult mind and child mind. The adult is saying, “The poison is good; it will heal you. The other is saying, “You’re crazy. Stop trying to kill me.”

I had written out a long list of questions and points for my visit with Dr. Magrinat. The first was this: “Under what criteria might we determine that my treatments should be significantly altered or ceased all together?”

Complaining is not something I like. I learned early that it does no good and have distaste for those who practice it. So, sharing in detail how my body had all but shut down the Friday after the “treatment;” my port had not stopped burning since the two-hour additional injection of saline on day two; rapid descent into menopause is akin to jumping straight into the Pacific Ocean in May without a wet suit; and that I still felt sick and weak enough nine days later to have just as easily not gotten out of bed was not in my plan.

But he asked. Taking up his pen, he said, “Tell me everything that’s happened since your first treatment.”

Beginning October 18, with credit for time served, I have a new chemotherapy regimen. “I promise this will be very different,” Dr. Magrinat said.

So, I’ll no longer get Taxotere – supposedly the harsher of the drugs. I’ll take two more treatments of Adriamycin and Cytoxan at two-week intervals plus the Neulasta for the white blood booster. Then for six-weeks straight I’ll get Taxol only.

This is still “standard of care” and means late December for completion; then of course radiation into March. I’ll not get my life back any time soon, but my ovaries could heal, maybe, I’m praying. I won’t have to take steroids. Maybe I’ll sleep without drugs; these lines around my mouth will fill in; I’ll stop eating like a horse. I’m going to try it because he promised it would be less debilitating than the last two. I have little to lose in terms of the drug game.

I felt this heavy blackness lift, as I walked away from Dr. Magrinat. Later that night I met two women I love dearly at a fundraiser for Alight – a local breast cancer organization, founded by Greensboro native Mary Gorrell Jones, that helps patients with financial, educational, and emotional support. The day I was diagnosed they gave me a nice bag full of resources and gifts. They have raised the money to build an incredible new cancer center in Greensboro.

I knew a few people in the crowded space and met several angelic-looking women now on the other side of midnight, including Mary Jones, that seemed honest when they said, “Call me if I can do anything at all for you; you’ll be alright; don’t worry.”

As I left the YMCA this morning so thankful that I’d stayed on that bike for 35 minutes, something occurred to me. What if God allowed this to happen to me because I really need the rest? What if I stop trying and just float?

I don’t know; it’s scary to think about just resting, but it’s out of my control anyway at this point.

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.

Getting Over Myself

Every week is a chapter complete with conflict, climax and conclusion. This week I’ve felt truly at physical odds with cancer for the first time. Since June when those words, “You have breast cancer” reached my ears, it’s been more of an emotional and even abstract dilemma.  There was talk about treatment; talk about surgery and what it all meant but it was still academic.

The surgery and immediate aftermath were surreal. I came through great and had virtually no pain in the week following. That’s not to say I wasn’t uncomfortable. It was terribly uncomfortable but there was no throbbing pain. I didn’t need to take the Vicadin (I still can’t take the Vicadin). There were no humiliating calls for help in the bathroom or while dressing. I got up each day and received the wonderful outpouring of love from friends and family in the form of food, calls, cards, flowers and visits. It was a tangible sense of reaping what I’ve tried to sow. That part felt so wonderful, I almost forgot about my dilemma.

I became lulled into the notion that I would soon be “back to normal.” My normal is about 65 mph seven days a week. I’m never without an agenda and mission. 

At almost two-weeks out I took on a full day of activities, not full throttle but somewhat normal. By 10:00 PM that night I felt devastated. It was a tired that rivals that of new motherhood and the pain arrived. It awoke me around 1:00 AM. As a child when I couldn’t sleep, I counted sheep. In early adulthood I would watch vapid TV programming or even walk dark streets trying to wear myself out. I know and fear insomnia. It surely must be an element of hell. Now, I count blessings on the rare occasions when sleep evades me, like last week when the pain came. I finally drifted back off about the time I got around to thanking God for things like the chickens.  

With the pain this week, which has developed a habit of showing up around 4:00 PM and intensifying until I finally give up around 10:00 PM, came a familiar taunting voice. It’s the one that questions everything I’ve done or left undone and plants doubt, discouragement and disappointment about the past and future.

The voice was “loaded for bear.” Earlier in the week I’d gone to see the oncologist. He gave me good news about my diagnosis and made chemotherapy sound like a spa treatment. The radiologist was not so reassuring. He’d talked in a language only doctors know, but he seemed to be indicating that all might not be so peachy. I blew it off.

The next day he called me at home, again speaking Greek, but he used a word that I did understand - re-incision. 

Two days later (the day I ended up hitting the wall), I went for my follow-up with the surgeon. He comes in all smiles. I’m all business. “Before I hug you, please tell me that Dr. Murray, while an esteemed colleague, is pedantic when it comes to reading pathology reports. Speak mere mortal to me and tell me he’s wrong.”

He smoothed his beard while flipping through the pathology pages. “No, Murray’s right. From a text book stand point we should open you back up. I can do it under local right now. We’ll have you out of here in an hour.”

The silence that accompanies the aftermath of a loud explosion surrounded me.  I felt the blood pulsing through my veins and all three “incisions” were suddenly alive, as if the stitches were going to burst open.

My brain kicked in finally in all it’s brilliance. “So, you are talking about reopening this wound on my chest?”

“Sure, we’ll just take a little more, get those text book margins. It’ll take me 15 minutes.”

He reads me like a text book: “But, if you don’t wanna do it, you don’t have to. I mean it’s something like 2.5 percent... (I’m only hearing the sound adults in Charlie Brown’s world make).

We talked some more and then there was the long silence where he waited patiently about 60 seconds for me to make a decision. The Jeopardy music played in my mind.

“No.”

And that was my final answer. But, if it does come back - there will be no choices. 

I came home from “chemotherapy school” the other day with out all the handouts. Later, when the pharmacist handed me literally a bag of medications and a book filled with possible side effects, I told him to keep the book. He was already rattled from me grilling him about generics and where they were made. I said, “I don’t do drugs well, especially ones made in China.”

I don’t want my brain to know that the steroid could make me look like a jack-o-lantern or that the other drugs cause constipation, anal seepage, night tremors, psoriasis, ring worm, economic recession... 

I’m not making it up. I honestly don’t tolerate any sort of drug well. I was sick for 9 months during my pregnancy. I can’t ride in the back set of a car. I tried to explain all of this to the oncologist. He nodded and said, “You need to take all of this just like I’m telling you to or you’ll get in a hole and it will take me a long time to pull you out.”

That night I took the drug for nerve pain. It helped and I was okay. No tingling of the extremities, blood clots or sleep apnea so far.

The conclusion of each chapter seems to be about me “getting over myself.” 

I have to get over how much time this will take, get over feeling taken out of even the dug out for this season, get over my fear of medications i.e. being old and weak, get over my difficulty asking for help, get over a sense of being worthless if not producing something, anything for God’s sake. 

Maybe as a therapy for getting the full use of my arm back, I’ll revive that annoying practice of catching stacks of pennies off the forearm, like Fonzie used to do, and get in the Guinness Book of World Records.

Romans 5: 3-5

...we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Preparing for What's Next

It was a week yesterday since Dr. Ed Levine removed a 2 centimeter tumor from my chest. It was triple negative, ductal carcinoma, highly aggressive. Things have gone really well. I walked Tuesday morning in the vineyard and it felt very empowering, even though I only did six laps. I worked most of the day and by that night felt exhausted.

My spirit remains positive. I refuse to think anything other than thoughts about healing and being better than I was before this all started.

Today I spent several hours with an incredible oncologist – Dr. Gus Magrinat; a self-described obsessive compulsive radiologist – Dr. Bob Murray; and my very dear friend, conservative role-model, financial planner and angel – Jackie Wieland (she’s the total package).

Lots of news and information today; thankfully, Jackie took notes:

1. My cancer is stage 1. None of my lymph nodes held traces of cancer. The “margins” were clean. There are no signs it metastasized. According to Magrinat, I was unusual in that I had 6 sentinel lymph nodes. Most people only have 1 or 2. Those along with 4 regular nodes, that happened to be hanging around too close for separation, came out.  Learn more about this practice:    Sentinel Lymph Node Biopsy: What Breast Cancer Patients Need to Know 

2. Chemotherapy will give me an 83 percent chance of not experiencing a reoccurrence of breast cancer versus a 70 percent chance without it. “Chemo is your friend,” Dr. Magrinat said. 

I’m trying to believe that. I will start the process on September 6 and finish December 20 for a total of 6 treatments combined with as many immune system building shots here at Wesley Long in Greensboro. I have the option of joining a randomized NSABP study. These studies have done a lot to improve cancer treatment drugs. Should I do it or not? 

Did you Know – Breast cancer spread to another part of the body is still breast cancer. If cancer forms on my knee, it means doctors will find cancerous breast tissue on the knee. So breast cancer does not become knee cancer if it spreads. I had no idea.

3. Dr. Murray broke the news that for my age and cancer type we gotta go the long route. That means 6 or more weeks of radiation 5 days a week. 

So, it looks like this whole interruption will carry on till February, which is exactly what Dr. Levine predicted. 

Only those who share my innate love/hate with time will empathize with the contortions my brain was doing around the amount of time this will take and how little work might get done for the next 6 months. I was mildly hyperventilating the whole time. I mean how can I justify taking up space on the planet if I mainly lie on a couch either sleeping or ingesting drugs via a “port”?

Near the end of the very detailed and amazingly layman-like short-course on breast cancer, Dr. Magrinat casually said, “you will never be the same again after this.”

It was the first time during all of these appointments and procedures that my eyes welled up publicly with tears. He quickly leaned forward speaking and indicating toward a box of Kleenex, “You’ll be completely healed. I mean spiritually and emotionally – you’ll never be the same.”

I knew what he meant already.

He went on to use this analogy: “It’s like I’m sending you to Iraq to be in combat. When your tour is over, you’ll have to reintegrate into civilian life, but you’ll be different.”

I’m already in Iraq. The Blackhawk dropped me off on June 20. My platoon is awesome. The Sergeants and Corporals are top notch; the best we have to offer. The General is, well the General. I’m still mostly in the way, trying not to screw this up; do my job and get back in one piece.

And, to add some spice to the mix over the weekend I, with help from many of you, decided to put Maggie into private school. She’s been on the waiting list at Caldwell Academy for two years. In April they assured me there was no way she’d ever get in due to demand. 

About 3 weeks ago I got a call: “we have a spot; do you want to be considered?”

I authorized the “background check” for Maggie. On Thursday, that’s two-days after my surgery and three days prior to public school starting, I get a call: “Ms. Harper, we’re so sorry but the school will not respond to our fax, call or emails requesting her records. Her teachers have not responded either to our requests for the student evaluation form. If you want her to be considered for this slot, you’ll have to get the records here yourself by tomorrow.”

It’s a long story, but God parted my Red Sea on this without mistake. I sat down and made a list of all the barriers and reasons why this could not work in the 11^th hour. I prayed: “God, I can’t deal with any confusion right now. If this is your will, make it abundantly clear.”

By Saturday night, all concerns were dealt with. Maggie is still pretty ticked off that I made an executive decision on her but she’s agreed to give it a shot with a good attitude – we have some differences of opinion regarding how long that shot should take.

I asked the other night on a scale of 1 – 10, with 1 being she wants to strangle me and 10 being she sees how much I love her and that this will turn out for her good – where she stood. “About a four, Mom,” she replied.

How do you tell an 11 year old that this opportunity is absolutely golden? I guess it’s a bit like telling the combat infantry soldier that if you’re going through hell keep going and on the other side of hell is healing; perhaps a new life of sorts.

Post Surgery

Once again, I’m overcome with appreciation for the love and attention you’ve given me. I can’t put into words the way I’ve felt since Tuesday morning. If you’ve ever personally experienced a sense that God was near you, that’s the feeling I’ve had all week. Much of the time it’s been delivered through the voices, hands and just smiles of others; some strangers; some not.

If you have reached out to me in anyway, know that it has been like an important brick in the building of a foundation. It’s the foundation from which I’m growing stronger, healing and preparing for what’s next in my life. I’ve not yet responded to all, but know that I heard or felt you and it made a difference.

I was in surgery for about 2 hours. The OR was full of people. They were all laughing, joking the way people do when they are enjoying themselves. The last thing I remember was Dr. Levine telling the origins of “slipping a Mickey.” He’s originally from Chicago. Someone had joked that they were going to “slip me a Mickey now.”

I started it prior to going in by making them all promise not to take a kidney or anything for the black market. I needed levity as I signed and resigned forms and even my own body leading up to the event.

Since we all learned during the “health care debate” two years ago that many doctors take extra organs or perform unnecessary surgeries to fraud insurance, the hospital has a policy now that both patient and doctor sign with a pen all incision sites.

Yes, I have Dr. Ed Levine’s initials on my breast now. There are no extra incisions.

The other miraculous thing is that in spite of having three incisions, I’ve had zero pain. There’s certainly discomfort but no pain. I’ve been able to get up, dress, walk and do all necessary things.

Next week holds further pathology results and my first visit with “the best” oncologist. During surgery Levine removed the tumor and six lymph nodes. I’m told all went well and that losing only six lymph nodes is a good sign. 

Please keep sending me your good thoughts and lifting up those prayers. I’ve only crossed the first mountain. There are more ahead.

For those who wondered, the book was called Healing Wellness by Kenneth and Gloria Copeland. I continue to read and recite key verses each day such as Psalm 103: 1 -5, Isaiah 53: 4 -5, Jeremiah 30:17, Romans 8:13, James 4: 7 – 10, John 10:10. We all have some place that needs healing. I encourage you to find out for yourself how eager the Lord is to heal you too.

Our health care is great and people want to help

I have felt so much love this week. Thank you so much for the outreach in every form. It means a lot, more than I can express. 

I’ve gotten exactly what I needed this last 7 days to make this first big decision. From talking to those on the other side of this, those in the middle and most of all, my friend Leslie’s (who I just met in April playing tennis) husband who is an oncology pharmaceutical rep. Chemo was my biggest fear of all and he completely helped me see another side.

I did exhale a bit today after my second visit with Dr. Levine and another very handsome radiologist. As a teaching hospital, they crowd the room with residents but I didn’t feel at all put out by this because each of them came across as very sincere and professional. Let’s face it no one gets into medicine for the money or glamour any more. I have a feeling I’ll be doing more research and writing on health care and the impending changes proposed within the law passed last year.

I’ve been fortunate to not need the American health care system very much. But, from my experience this last month in both hospitals, we are blessed with a dedication and standard of care that simply must be protected and advocated for. 

Before I leave the health care industry, I must say too that so far my insurance carrier – Humana -  has been great.  When I first called about finding a facility “in-network” to get the mammogram, I spoke to a very nice woman. She was very helpful and gave me her extension. I call her regularly with updates and ask lots of questions. She’s been very reassuring that everything my doctor orders will be covered and I’ve learned that Humana offers services I was not even aware of like 24 hour on-call nurses for any concerns and discounts on alternative therapies. Stay tuned on this because the bills have not started to come in as of yet but that dread I had about insurance has passed. 

Here’s the break down of what I know as of today:

• Blood work and x-rays looked great. No additional cancer or problems detected at this point. Thank you, God!
• I’ll go in for a lumpectomy on Tuesday, August 9 at 8AM. I should be home by 2PM that day. Within a couple days, I can do basically whatever I feel like doing, including driving. There’s still a chance that more not good stuff can be found during surgery which could change the outcomes. For example, if the pathology is not good on the area surrounding the tumor more surgery could be required. If the “sentinel” lymph node is sick, then perhaps all the lymph nodes (up to 16, I think) can be taken which has implications for healing and later treatments. The “sentinel” is a lymph node close to the breast that is the conduit of sorts for escaped cancer cells. If that one is sick, it tattles on the cancer telling the doctors that more treatment is needed.
• A lumpectomy does require extended treatment to get the odds of reoccurrence down. I’ll do many months of chemotherapy following surgery and once that’s done at least one month of 5-day-week radiation. 
• For now I’ve asked for what I want and given him permission to do what he needs to do. I asked about getting a nose job and my eyes lifted during surgery, he said that was pushing it, but did tell me he would feel comfortable having his sister take the same course I’ve chosen. 

I think this first step will go smooth. The hell for me is going to be the many months of continued treatment and not being at full capacity – not knowing what future full capacity will look like. I’m going to have to make peace with time. I’m such a freak about time. I never expected to live past 30. Then Maggie was born at 33. Then I got to come home at 40. It all feels like borrowed time and I still have such a long list of things I really, really want to accomplish.

It’s like my Aunt Carolyn said, “You’re gonna have to get over a lot, including worrying about everybody else.”

I think this is permission to be selfish. It could get good to me and I’ll start expecting special treatment from now on. Maybe one of those really nice looking Jewish doctors is single? That’s probably pushing it already.

I’ve got to close with the rest of the tree story. Two weeks ago half of my big oak tree came crashing down. When I went out to see it in the faint morning light, I felt like the spirit of God spoke to me about pruning big but not killing the tree or me. This week my Dad and his friend Bill came and cleaned much of it up. Then a father and son team – the Michaux’s (I swear they look like direct descendants of Van Gough) – came and did the rest, including felling a very tall and leaning dead pine tree right outside my bedroom window.  Now that it’s all cleaned up, there’s all this fresh light coming into our yard and front windows. It feels good, open and new in a weird sort of way. 

Let’s hope that’s a good omen and that the oak lives. I’ve told God that if that tree dies he’s really ruined a great witness. 

Thanks again for the offers of help, support and prayers. I will continue to need all of that in the coming months. The hardest part still lies ahead.

Sharing the News

I’ve been dreaming for a long time about sending an email to friends and family with great news about some milestone reached in my life. This is not that email. It’s bad news at this point for me, but I know that it can and will be used for my good. I have learned recently that I have breast cancer.

If you are on this list, it’s because I trust you. I was surprised at how long the list really is because I find trusting people with myself very difficult. So, there’s already a blessing that in four short years my list of friends has literally more than doubled.

I don’t know much about what’s going to happen at this point (see the detail below). The journey has only just begun and promises to be quite long. I do have to make what feels like a very large decision this week and that’s whether to go with a lumpectomy or full mastectomy, perhaps even double – why just get one new breast after all?

Maggie does not know yet. She’s still in CO. I do not feel safe at all letting this information get to CO. I will be very careful until this is all over to not let the information get to Dave. I just don’t want any unnecessary stress. I don’t want added stress or fear for Maggie either. She’s my biggest concern next to simply surviving this. I want her life to remain as unscathed as possible. There’s my clients too that need to continue finding me prompt and indispensible. Losing my ability to be financially stable and take care of Maggie and I would be the most devastating thing of all. I’ve worked extremely hard since about age 15 to be financially independent.

As a matter of fact, I don’t want to share the information widely at all. I don’t like to talk about it much because I’m just not an openly emotional person. I’m a ridiculously optimistic person with crazy dreams in spite of no real indications they’ll come to pass. Yet, I still keeping working at it and believing. I don’t want people feeling sorry for me or treating me with kid gloves. I want your prayers and certainly information if you have access to something or someone helpful. If you live nearby, I’ll sure appreciate food for Maggie once the dreaded chemotherapy begins – I’m told this is not an option despite being more scared about that than anything else about the process. 

Among you are varying degrees of faith in God and I respect that. You’ll be hearing me talk regularly about how God is at work in this. I’ll do so to record and remind myself that God has not forgotten about me. I’ll continue to believe he works all things for the good of those who love him because otherwise the rest of my faith is meaningless. The unshakeable belief I’ve come to in the last eight years or so has been hard won after years of searching under every rock just to be sure, after in large part losing my marriage over it.  I don’t eat anything with a spoon offered by another. I have to find out first hand everything the hard way. If you’re still wondering yourself, I can tell you from not one but many first hand experiences – there is a God and he’s very personal. Perhaps what happens to me will heighten your own awareness of the fact that he’s looking for you.  My personal mission for the last five plus years has been to influence growth and the knowledge of God within people. Here’s another chance, I guess.

My first talk with him about this pointed out that I’ve been praying for proverbial bread for a very long time and that this feels a lot like a snake.  

Yet, since the day I left the doctor’s office numb with this news, I’ve been blown away by the “chance” meetings and recent connections that are already proving helpful. Exactly one week after receiving this news I lay in bed willing myself to consciousness from dreams of evil doctors and large brown spiders in my bed. A distinct sound brought me fully awake. A tree had just fallen. I went outside and by a very faint predawn light could see that an enormous arm of a very large oak tree had split right off.  It took out a smaller magnolia tree and a couple Adirondack chairs but otherwise lay gracefully across a wide expanse of our yard.

I stared at the jagged wound left by the weight of the breaking arm but noted that the big, towering tree was otherwise just fine. A voice in my spirit that I know to be God, because the words are always way simpler and wiser than anything I ever say, said, “Sometimes I have to prune a lot but you’re going to live.”

I didn’t think there was anything else left to prune, but here we go.

What I know:

•       Invasive ductal carcinoma. Triple negative. 2 cm tumor, right breast. High grade III. Aggressive growing. Tumor 

                 anywhere from 3 to 8 years growing.

•       I lymph node tested negative - good news.

•       Surgery will be soon at Wake Forest Baptist Health – Dr. Ed Levine, Chief of Surgical Oncology. Raved over by 

                 all who know anything about this stuff. Performed surgery on my doctor 12 years ago.

•       Next appointment is July 8 to meet oncologist, radiologist, plastic surgeon and get results of further blood work        

                and chest x-ray.

•       Choice to make right away is whether to go with a lumpectomy (requires radiation and chemotherapy with a 10 to 15 percent chance of reoccurrence) or mastectomy (requires chemotherapy only). Then there’s decisions about reconstruction or not, etc.

•       Surgery projected next 2 to 3 weeks. Depending on what I decide, no overnight in hospital to several days. Chemotherapy 4 to 6 months.