“If you take one step with all the knowledge you have, there is usually just enough light shining to show you the next step.” —Mardy Murie

A magical thing happened in my cancer support group the other night.  We began in the usual way with the “dailies”—what’s happening in daily life, followed by the “numbers” —tumor markers and treatment numbers, and then anything else.      

There is something comforting in all this, mostly because simply coming together says, “We are here for each other.”  So, when Peg tells us she is getting her port out after two years of no recurrence, we feel her excitement; when Nina tells us that she is starting her sixth line of treatment because the fifth stopped working, we feel her pain.  We fill the hour and a half entering one another’s lives.  It is good.  We say goodbye.

Every once in a while, we slip into a deeper place.  It usually starts with one person’s going deeper. 

This particular night was such a night.  Pat says that given the choice now, she would not trade in her cancer to get her old life back.  She had downsized from a large carriage house to one room and a suitcase.  She feels unburdened, not tied to stuff and is free to do what’s most important: travel to spend time with her daughter and grandchildren.  

Out of about 10 or 11 in our support group that night, three say they wouldn’t want their old life back in exchange for their cancer.  Pat is the first. 

Peg is the second.  She hasn’t done anything as radical as selling her house, but she has learned how to be in the moment—savor the warmth of a cup of tea or the surprising beauty of a side street.  Best of all, she’s learned how much her family loves her.  She will keep her sense of being loved, thank you very much, and not take a cancer-free life.

I am the third.  I am surprised to hear myself say it.  This is not something I would have said in the months immediately following the diagnosis.  During those early months, there was pretty much nothing but uncontrollable tears, often crying alone because I didn’t want to be a burden. 

In those early months, I had only confused thinking.  How will I go through chemo when I need to get my affairs in order, and I don’t even know what that means. But now life has opened and deepened, and I want this new life.

Apparently, emerging from adversity as a more

whole, authentic person and counting the loss as a blessing is not unusual.  Hospice nurse Frank Ostasenski in his book The Five Invitations, quotes Maslow after a near-fatal heart attack:

"The confrontation with death, and the reprieve from it, makes everything look so precious, so sacred, so beautiful, that I feel more strongly than ever the impulse to love it, to embrace it, and to let myself be overwhelmed by it.  My river has never looked so beautiful.  Death in its ever-present possibility makes love, passionate love, more possible."   

Some like Maslow might experience an instantaneous transformation into appreciation.  For others, perhaps due in part to the nature of the adversity, the trauma or loss, catapults them into a protracted life crisis. 

My friend Phyllis fits the protracted scenario.  When her husband left her, she faced raising two children alone with no job and only a high school education.  She tells me she spent a lot of time lying on the floor in the fetal position crying.  Today, however, she will tell you, although she still hasn’t figured a way to tell her ex-husband without it sounding insulting: “I’m so glad he walked away.” 

How does someone move from the fetal position to such soulful contentment?  My situation also fits the protracted sense of loss, the fetal-position-on-the-floor scenario, which is all the more reason I am surprised to hear myself say that I wouldn’t want my old life back. 

 Early on, my diagnosis brought me back to when my brother Jim had died suddenly.  His untimely death was more difficult to bear than my diagnosis, but in both situations my brain simply would not wrap itself around the idea that life was changed forever. 

 After Jim’s death, I’d have the dream many bereaved people dream—that he was still alive.  I’d awaken shocked to realize it wasn’t true.   Although I knew rationally that my magical thinking was not true, it didn’t stop me from imagining that pretty soon things would be normal again.  This was not, could not be, forever.  Sometimes, magical thinking is the best we can do. 

 Early on in my diagnosis, I’d dream I was healthy and mobile again and then be almost shocked awake that life would not be normal again.  Magical thinking was again my friend.  I imagined that after some event —chemo, surgery, diet change—my life would again be the same old familiar one.   

 I also learned I was not able to stop the magical thinking which some would call denial.  Instead, I had to make a parallel plan just in case this disease was permanent and serious.

 I coped by taking one small step at a time. I was simply too overwhelmed to plan chemo, surgery, getting rid of stuff, new insurance, and my goodbyes all at once.   When I wanted to pull the covers over my head and fantasize that some all-wise person who made all correct decisions would make my health decisions, two thoughts grounded me.  First, I am not alone. My faith tells me I am not alone.  Second, just take the next step ahead. The next steps were small—get out of bed before noon, get dressed, take a walk, pick up the phone, make a doctor’s appointment, cook something healthy, talk to someone with a different perspective, so I’m not zoning out in my own thought bubble.  During that time, the words of two people, Mardy Murie and John Henry Newman, strengthened me by telling me how to take the next step ahead. Both of them willingly sacrificed an easy life for a harder, but more authentic one. When people have opted to take the meaningful, more difficult way instead of the easy, comfortable way, their words emanate power and truth.   Self-help gurus who have advice but have never sacrificed, never made life-changing choices mean nothing to me.  Their words are empty.  They have not suffered. But Murie and Newman suffered. They risked everything to live what they were committed to. Those who have come out the other end of sacrificing everything, are the ones whose words have power for me.

 I trust their wisdom. I listen to it. I’m hungry for it.    For Murie, her commitment to conservation meant living years in the harshest elements of the Far North striving for, and ultimately succeeding in, protecting what is now the Arctic National Wildlife Refuge. She says:

(1) Step with all the knowledge you have.

If you take one step with all the knowledge you have, there is usually just enough light shining to show you the next step.” —Mardy Murie

(2) Trust that knowing just the next step no matter how small is sufficient

As I mentioned, the other person who strengthened me during this time was John Henry Newman.  Newman was considered among the finest intellectuals of his day.  For Newman, following his conscience meant leaving his job at Oxford, being ostracized by his academic colleagues, and being scorned by some family members he dearly loved.  Yet, in his humble prayer which I’ve copied below, he is not asking to see lofty intellectual ideals made manifest but simply to know his one next step. 

When I feel confused, worried, or lost, his last sentence calms and strengthens me.  I sometimes find myself reciting it like a mantra, “Lord, one step is enough for me.”  If knowing one step ahead was enough for Newman, it is enough for me.

The Pillar of the Cloud 

Lead, Kindly Light, amid the encircling gloom

Lead Thou me on!

The night is dark, and I am far from home—

Lead Thou me on!

Keep Thou my feet; I do not ask to see the distant scene

—one step is enough for me.   —John Henry Newman 

Isaac Lidsky, who is the topic of another article in this collection, said it another way as he dealt with encroaching blindness.  “Don’t try to figure out how to get from A to Z, try to figure out how to get from A to B.”   Small steps are good enough.  I had to keep telling myself this after my surgery.  

I learned after my surgery that I had been misdiagnosed.  The first diagnosis, done by biopsy, determined I had ovarian cancer.  Yet, the tumors that were removed at surgery showed endometrial cancer.  

Sometimes in the moment, I use humor to diffuse my shock.  I pointed to the magazine rack hanging in my oncologist’s examining room wall.  “So, you mean the whole time that I was reading medical journal articles about treatments for ovarian cancer, I could have just been reading those?”  I asked pointing at the People and Country Living magazines.

“Yup,” she said laughing.

Then I asked the serious question.  “Should I have a third opinion?  I’d feel better if someone would break the tie.”

 “No,” she said.  “I think we know what we are dealing with now.”

  I left her office, went home and stayed in bed for most of the next seven days.  I got up only to do essential things.  I was in shock.  I really wanted yet one more opinion.  But I knew I’d appear like a hypochondriac if I asked for it. When I would try to talk myself out of it, I’d hear a nagging little voice in my head say, “But, they’ve already been wrong once.  What’s to stop them from being wrong again?”  When I get like this, I quiet my nerves and ask myself, what’s the next thing I need to do?  During that week in bed, I had only one recurrent thought: My next step has to be another opinion.  I cringed thinking of the eye rolls my request would elicit.  How to convince my oncologist?  I felt embarrassed, ashamed, and determined all at the same time.  She is going to think I am just a hysterical patient with a foolish request.  All I knew is that I could not see any further down the road.  I could not talk about treatments, not when I wasn’t 100% sure what I was treating.  Getting another pathologist’s opinion was my one next step.  My only step.  

I learned that Hopkins has a little-known gynecologic oncology pathology lab where all they do all day is read slides pertaining to female cancers mostly from other places seeking second opinions.  My one next step would be to get them to read my slides.  I wrote an email to my oncologist, expressing that I know she thinks we know what we are dealing with, but for my own peace of mind, I needed to know that I’ve done everything to save my life, and that included having a third opinion “break the tie” so to speak.  She called me and when I started explaining, she interrupted by telling me she had already requested my slides be sent to Hopkins.  She would go along with me.

Then, my next step was getting the HMO to send their slides from the biopsy.  I must have called half a dozen times.  Finally, only when I said I would call the medical director did they send the slides.  

It turns out that the third opinion was a good next step.  The pathologist concluded that both of the previous diagnoses were incorrect.  This was a rare, aggressive cancer called mesonephric adenocarcinoma of the uterus, commonly misdiagnosed because pathologists are not used to seeing it. 

(3) Grace comes as you step.

There is one more piece of wisdom that helps me take the next step ahead.  It’s a reminder from an old nun.  When TV personality Raymond Arroyo wanted to write a small memoir on Mother Angelica, the person he admired most, he confessed to her that he proposed a brief biosketch because he feared he would fail at a full biography.  Her reply ranks in my top three most powerful quotes on taking the step:

 “Being afraid is not a problem.  Doing nothing when you’re afraid, that’s the problem.  Look, if you feel God’s calling you, you start out.  You take one step at a time.  The grace comes as you step.”  Mother Angelica

This was especially helpful when I called other oncologists for a second opinion.  Fortunately, I had an oncologist who supported my seeking other opinions when I relapsed.  He would want to read their notes.  He never once pretended to have all the answers. 

When I wanted to call an oncologist and ask for a second opinion, I always hesitated.  Embarrassed.  How entitled I must look.  My friend, Kathy, says “If you don’t ask, the answer is always no.”  In a funny way, she encouraged me to make a phone call to Arizona. 

When my first chemo stopped working and my cancer started growing again, I sought out three opinions.  Two of those opinions advised me against using a newly FDA approved treatment for my cancer.  There was one oncologist in Arizona that I knew had been using the new treatment since the day it was approved, and I wanted to see him.  I was willing to fly there, but his office staff said they only booked appointments within a certain geographic area.  I was disappointed.

I believe prayer can help.  In this situation, I called back a few days later and talked to his nurse.  I explained that I was not interested in his opinion just as a casual second opinion, but that I had a rare, aggressive cancer and he was the only one I knew who was using the new drugs.  He was also the expert on Avastin, the other choice if I didn’t go on the new drugs.  She said she would talk to him.

What happened next, I can only call grace.  She called me and said he would be in a taxi at a particular time and if I called him then, he would talk with me for 20 minutes.  In those 20 minutes, he laid out everything I needed to know about starting the new drugs and highly encouraged me to do so.  Before we hung up, he said to me, “We both know your prognosis.  We don’t need to talk about that.  But every day I see miracles in my office.”

I spent the next year and half on those new drugs with my cancer under control.

Afterthoughts

Lately, I have been reflecting on how not being able to see more than the next step ahead can be a blessing.  When my siblings and I decided to do home hospice for our dad, we re-configured our lives knowing that no matter how difficult our new lives would be, the sacrifice would only be for a month or two.  However, two months turned into six, and six turned into 12.  One year turned into two years, and two years turned into two and a half years. 

Paradoxically, being given only enough sight to take the next step allowed us to fully show up each day.  I will always be happy how I savored my dad’s existence each day—his kind words, his face while he was sleeping, his professional body language which he only took on when his dementia took him back into his 20’s and he was imagining sitting at his desk making business calls.  I never knew if it was his last day, so I cherished him each one. 

 How overwhelmed we might have been if we knew in the beginning the task we were signing on for a long haul.  Would I have savored the journey with him as much had I known I had more time?  Probably not.