Some Good News, A Myriad of Consequences

My cell phone began vibrating at 5:00 p.m., the time of day I usually set aside for prayer. I wasn’t going to answer it, but I weakened when I noticed that  the number on display was an unfamiliar one from Massachusetts. (Perhaps a call from someone on my care team at Dana Farber Cancer Institute in Boston?) I answered and the caller announced: “Pastor Dufresne, this is Jim Deason at Dana Farber, and I’m calling with some good news!” “Jim Deason?” I wondered for a second. “Oh, of course,” I told myself, “My oncologist!”

“Good news?” I asked. “Yes, the results came back from the genetic testing of your tumor,” he answered. “It turns out you have the right gene mutation that makes you eligible for the drug, Cetuximab. There’s a good chance that Cetuximab will increase the potency of   your present chemotherapy and reduce the lesions on your liver!” The man was beside himself with glee — a remarkable new facet of his character, which, until now, I would have described as encouraging, but ever measured and cautious. I never thought I’d use ‘enthusiastic’ and ‘oncologist’ in the same sentence, but there was no denying his joy. 

Dr. Deason told me that he would order four treatments with the new drug component over the course of eight weeks. Then, I’d come down to Boston for full imaging to discover whether any tumor-shrinking progress had taken place. “There’s a possible side-effect I need to warn you about,” he added. “You might develop a skin rash. If that happens, we have some excellent dermatologists here who can help you with the situation.” I thanked him for all his efforts on my behalf and rang off, truly grateful for the first piece of clinical good news I’d  received in six months. 

In fact, things had not been going well for me at all recently. Normally, I start feeling like myself again three or four days after a chemo infusion. That means I can rejoin the human race and spend the following ten days feeling better before the next treatment’s onslaught. With this past round, however, I was feeling worse and worse with each passing day.  Each one of my symptoms was on the list of possible side-effects for the chemotherapy they were giving me. But never, until now, had I experienced every one of the after-effects simultaneously. 

Nevertheless, I was eager to get started on the new turbo-charged infusion cocktail. The morning I showed up at the cancer center for the infusion, however, my blood pressure was low and my heart was racing. “It’s not the chemotherapy making you feel so lousy,” they told me, “you’re dehydrated.”  The care team administered two liters of saline solution in an effort to get me back into ‘chemo-shape,’ but my numbers still weren’t good enough. Finally, the doctor postponed the chemotherapy session and sent me to the hospital emergency room to complete the rehydration process.

When I arrived about forty minutes later at the Emergency Room, my vitals were taken in the triage nurse’s office. By that time, my blood pressure and pulse rate had returned to normal. Upon hearing this, my first thought was, “I no longer need to be here; I’ll just go home and continue to drink loads of water until my rescheduled chemotherapy session in a couple of days.” My second thought was, “No, I’m caught in a system here. They won’t take kindly to my leaving without seeing a doctor, and there’s a good reason for that. Self-diagnosis can be dangerous. I should be sure I’m okay before I go.” Then a third, somewhat perverse thought occurred to me as I peered out through the nurse’s office window at the jam-packed waiting room: “I’m caught up in a triage system here and I’ve just tested out as normal — medically non-urgent and unremarkable.  That means that I’m at the end of the queue after the twenty-five people waiting out there and, if anyone with a more serious condition than mine needs to be seen, they will, of course, be given priority. I could be waiting for hours.”

Elizabeth and I found two seats together out of the sight-lines of the omni-present televisions and began our waiting room vigil. A patient advocate came around and I asked her how long people had to wait. “About two hours,” she chirped. “It’s like this in every hospital emergency room in Maine,” she added, and I wondered to myself whether she was trying to commiserate with me or simply felt the need to make excuses for the hospital.

What a remarkable collection of humanity we were in that waiting room. All the people Jesus taught us especially to love were assembled there: (‘Lord, when did we see you a stranger, or naked, or sick or imprisoned?’ Mt. 25: 37-39) There was the young man to the left of us — he couldn’t have been over twenty — sprawled over a double seater chair. His ankles were bandaged and so were his knees. Morbidly obese, he kept from making eye contact with anyone in the room. Across the way on the right sat a prison inmate, conspicuous in an orange jumpsuit, chained at her ankles and with large tattoos running down both arms, she chatted with a sheriff’s deputy assigned as her guard. Facing us sat a very young mother with a sick baby that the grandmother was holding. Both women looked worried — not only about the baby’s health, but also, I suspected, about how they were going to pay for today’s visit.  Behind us sat an elderly man, all alone, inadequately clothed for that very cold day, and coughing continuously.

In fact, many, if not most of the people in the room were either wheezing, sneezing or hacking as we all sat waiting. The next time the patient advocate came around, I asked her for a face mask. About forty minutes into the wait, I became increasingly concerned that the longer we sat in the crowded room, the unhealthier the environment became for us all. When the patient advocate came around again, she looked at me and said, “Would it help if you could talk to the head nurse?” “Thank you, yes,” I replied. She left, and we waited a little longer.

When the nurse arrived, she towered over us and asked what was the problem. I immediately stood up, removing my mask so we could speak face-to-face. As I rose, conversations all around us stopped; everyone wanted to hear all about this encounter. I looked around and said quietly to the nurse that this might not be the best place for a consultation. Motioning to a dark alcove at the end of the room, she suggested we talk over there.  That was fine by me, except that when we arrived in the alcove, we found that another sheriff’s deputy was in full command of the space as he barked loudly into his personal cellphone. The conversation had something to do with a repair bill for collision damage on his car that exceeded the original  estimate and, he declared, “there’s no way I’m gonna pay it.” 

I knew I had one chance with the head nurse to plead my case, and the officer’s distracting conversation wasn’t going to help the cause. I asked the nurse to wait a brief moment and walked over to the deputy and said in a restrained voice, “Excuse me, Sheriff, but the Head Nurse and I need to have a medical consultation here. Would it be possible if you could . . . “ and, without looking at me or missing a beat in his argument with the collision guy, the fellow just walked away in the direction of  the security checkpoint at the Emergency Room entrance.

I returned to the waiting nurse, took a deep breath, identified myself by name and date of birth and said, “I’m presently undergoing some intense chemotherapy which, my blood work shows,  has significantly compromised my immune system.  I’ve been waiting about an hour in a crowded room where people seem to be dealing with a lot of respiratory issues. In addition, by the time I’d arrived at the Emergency Room from the Cancer Center, the vital signs that had previously indicated dehydration — the reason I was sent here — had registered normal. That probably means that in the triage system, anyone with more serious issues will, understandably, be given priority to be seen. I’m worried that I’ll have to wait for a very long time in an unhealthy situation before I’m seen for a medical issue that already seems to have been resolved.”

The head nurse paused for a moment, and then responded in a way that took me quite by surprise. She said, “Well, there are only three people ahead of you in the queue. Could you wait ten minutes until we’re able to secure an examining room where you can be seen by a doctor?” I was floored. I answered immediately, “That sounds like a very reasonable proposal. Thank you very much.” As I made my way back to my seat, it began to dawn on me that, given the large number of sick people who had been waiting to be seen before I got to the ER,  I couldn’t possibly be that high on the list — number four to be seen in ten minutes. Unless, unless, I speculated, this nurse who was in charge of the Emergency Room made an in-the-moment decision to move me up for what could be any number of reasons.

True to her word, my name was called within ten minutes — an examining room had been made ready for me. As we rose to go, I glanced at some of the folks around me who were still waiting — each of them in the same seat they’d been occupying since before I’d arrived. It felt like they were all looking at me, the guy who’d wrangled special treatment and was allowed to go to the front of the line after talking to the head nurse. I hadn’t expected my request to have played out in this fashion. Nevertheless, I felt ashamed. I, who believed in a savior who taught us, ‘Don’t vie for the place of honor, but take the lowest place; don’t exalt yourself, be humble and then you’ll be exalted.’ (Luke 14: 7-11)

Perhaps a case could be made that I, in my vulnerability to infection was deserving of such treatment, but I can’t help seeing more self-preservation than compassionate solidarity in my behavior. Or, one can say that I had to advocate for myself in a potentially perilous situation. That might be true, and I have been blessed with a lot of training and experience advocating for people over the years. But sadly, as far as I could see, nobody else in that waiting room got to enjoy the immediate relief and benefits that I received that day. I still pray for the people I left stuck in a tough place that I escaped, but praying doesn’t seem quite enough.

The good news is that in a few days, fully hydrated, I received my first heavy-duty course of chemotherapy and they suspect that the Cetuximab might well be working. They say that because I’ve come down with the worst skin rash I’ve ever experienced: blotches all over my torso, face and scalp. It’s like having a harsh sunburn while suffering from a nasty case of chickenpox. I’ve never looked so bad and sometimes can’t help thinking of myself as a leper without a bell.

Life’s not perfect and neither are we. We are all beggars in this world, as Martin Luther once put it, seeking forgiveness, healing and hope.

6 Thoughts on “Some Good News, A Myriad of Consequences

  1. Edward, Oh my, you are riding down such a roaring river of pain, sometimes barely able to navigate with the small oar you have. It’s difficult for me to stay with you, with so much suffering all around; yours, mine and everyone’s. I feel like you are rowing for all of us who can hardly manage the rising and falling of the waters. Oh my. . . .

  2. Par Kettis on January 27, 2019 at 12:32 pm said:

    Dear Edward, Thank you for sharing your tough experiences. One reason I like reading what you are going through is that my mother long ago went through something similar, but we never discussed the problem as she was in denial of her cancer. It is such a relief to be able ro discuss these things for what they are in a realistic and understanding way.. We are praying for you together with everybody else in Trinity church.
    Par

  3. Cally Rogers-Witte on January 27, 2019 at 1:18 pm said:

    Dear Ed,
    It is so helpful to those of us who love you, pray for you, and wonder how you are doing to get these up-dates, written so beautifully and truthfully! Thank you. I can’t begin to imagine feeling energetic or creative enough to even attempt to write during these tough times as you do but it is surely a gift to all of us. The rash sounds extremely uncomfortable but it’s good to hear that it may signal that the new drug is working! Our deep love to you and to Elizabeth!
    Cally

  4. CYNTHIA L JENSEN on January 28, 2019 at 11:16 am said:

    Ed, thank you for this vision of humble-ness.
    Love, Cynthia

  5. Philip M. Howe on January 29, 2019 at 8:43 pm said:

    To borrow another passage from the New Testament, ” And the meek shall inherit the earth.”

  6. Anne Stribling on January 31, 2019 at 9:57 pm said:

    Thank you for sharing this description of your frustrations and your persistence in getting the help you need. We celebrate your strength!

    Much love and courage in the new year,

    Anne

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