I had a lovely clinic visit with Mr. EQ, a recently retired, effervescent pastor of a nearby small community here in Texas. He has a history of acute myeloid leukemia (AML) for which he was treated 5 years ago with standard cytotoxic chemotherapy in his 60s and had achieved a complete remission. Unfortunately, now his disease has decided to unceremoniously take an encore, this time manifesting as a therapy-related myelodysplastic syndrome (MDS) with low blood counts, increasing fatigue, and increased blood and platelet transfusion needs.
Since this second go-around began a few years ago, he has been maintained on long-term hypomethylator chemotherapy, outpatient-based, which he dutifully receives the first 5 days of every monthly cycle. This is now our third year together on this indefinite monthly approach, and he is now 71 years old.
The Pastor did well overall during the first 2 years on this approach, keeping himself completely out of the hospital, and maintaining a steady sense of quality of life and a balanced amount of rest, travel, family time, and activity. However, this past year he has been utterly ravaged by numerous life-threatening bacterial infections and multiple lengthy hospitalizations, which of course, is unfortunately par for the course for our patients with more advanced MDS and AML, but he had really avoided these until now.
Most recently, I attended on him again on the inpatient side, and seeing him once again in the hospital, rather than our usual scene of the two of us laughing together and chatting about his latest family events in the comfort of my clinic, this was now becoming commonplace to see him in a hospital bed hooked up to intravenous antibiotics. However, this time, he was presenting to the ICU, and for only the first time in his whole life, he actually looked irreversibly ill. I had taken care of him before in the hospital, but this time was different. I thought I was going to lose him this time.
Sometimes, it can take a moment to appreciate that we as hematologists/oncologists need to change hats so quickly from the long-time outpatient doctor mode into the you-are-now-in-the-hospital-time-to-take-action-inpatient mode. Fortunately, he was ultimately discharged a week and a half later, recovered from acute infection, but still with ongoing acute chronic leg pains, and he was noticeably much more frail compared to 6 months ago. He wasn't just walking with that cane for in-case-it-was-needed support any longer, it appeared that the cane was a burdensome necessity now and he was not so secretly relying quite heavily on it, thinking neither me nor his wife would notice.
So, now back in the relatively quiet safe space of the outpatient clinic, it was nice to be reunited. To just talk again, without the bells and whistles of the angry ICU machinery in the background. We caught up. We reminisced. I had so many thoughts racing in my head to ask him. How was the rest of the hospital stay after you got out of the ICU? How was the hospital food for you? How is your walking, any better now? Let's look at those follow-up images for that subdural hematoma and those leg pains—what did we find out was the source of those?
But before I could open up my mouth to speak, the Pastor, no stranger to friendly banter, started this post-hospital visit by saying, charmingly as always—“you know doc , I have been doing some reading in the medical journals, really trying to pour over my case, and they all say—it's pretty remarkable the consensus opinion we have here on this—that when all else is not working it is time to have the patient stay over at the doctor's house for a home cooked meal and more time together!”
Ha! Hilarious. I guffawed. In his case, I wish it were that easy!
But it was not all smiles and mirth that day. I took a long look at him. One of those take-stock moments, like a close-up shot that you see employed in a critical moment of a dramatic movie. The Pastor was looking frail. The Pastor actually looked like a patient with leukemia for first time in 5 years. He was tired. No, he was Tired with a capital T.
Finally, I asked him directly, cutting through the friendly chatter, so how are you really doing, have you had a chance to return to your normal life? What have you been up to in between hospital and clinic visits?
He thought about it for a few seconds and then deftly responded by telling me that quite a lot had taken place in between the time he was in the hospital, leading up to this clinic visit. He and his wife told me that 2 weeks after getting out of the hospital, he actually presided over a funeral. He had retired 2 years ago from full-time pastor duties and now was bestowed the loving title, created/personalized for him, as “Pastor Emeritus”—one of the many signs of affection from his community for this beloved man. But before they asked him to suit back up, to come out of retirement for this one event, the agonizing question came up: Can he even do this? Does he have enough energy to even consider this?
Even though he was still recovering from a grueling inpatient hospitalization, he accepted the invitation. Why? Because, of course, Mr. EQ, the Pastor, hasn't said no to anyone in 71 years! He needed 3-4 people to assist him from his wheelchair to get to the podium. As Mrs. Q told it, with loving admiration and beaming with pride, the Pastor delivered the funeral sermon with grace, poise, and humor. It was very well received and his congregation, his people, his flock that he had led for over 40 years expressed joy and more accurately, just plain relief, to see him out there, back in his element, back where he belonged—behind the podium, speaking to crowd, preaching, and teaching.
I asked him how could anyone possibly do this, to preside over an outdoor funeral 2 weeks after one's own life was in so much jeopardy? This time, he looked at me for a long time. Such a long time in fact that it became uncomfortable. So many times as physicians, we are too quick to burst in and spoil the beauty of these awkward, but highly necessary, moments of silence. It is our instinct to fill the space with our own thoughts, plans, laboratory results, and blast percent counts, medical mumbo-jumbo.
Not this time, I told myself, let the scene play out on its own. No interrupting. No guiding. No filling the void. Give him the time he needs to express what's on his mind. I stared back at him awaiting his response, and I noticed that he was starting to choke back tears. Not sniffles, but snobs. His wife started crying, too. I was in shock, as I had never seen either of them like this over our years together, whether with great news or bad, ever show even one single tear, as both of them were always so even-keeled.
Mr. EQ, through his emotions, said he was asked this same question I just posed several times at the funeral. He said it was true this was a friend and would've done it no matter what the circumstances. But he said even if not a direct friend he would've done this anyway. Why? Mr. EQ said it was because he was called to do it. Not by people. He felt a calling from above. To be a pastor in the first place. To do this funeral at this time, even through his own hardships. To do his duty. Without regard to his own personal limitations. He confessed to me that he was in severe pain throughout the funeral. But he said he felt some temporary relief during his speaking, by just being up there in front of his audience, that that's where he belonged at that moment in time.
So, he told me, “doc, that's what I've been up to in between our visits—I have been trying to just live my life, trying my best to fulfill my duties to myself, to my family, to my congregation. I really realized that it's these ‘blind spots’ in between all of the visits and blood transfusions and infections and hospitalizations, in which patients with MDS and AML are actually trying to just live. That's the part we don't see, we can't picture, we don't always have time to find out about. The difficulty getting to and from the house to the grocery store. The eulogy given outdoors in severe pain and fatigue that was appreciated by so many but done at great hardship for the individual. The firewood bundle that was delivered by an anonymous neighbor on a cold winter night to your patient leaving them eternally grateful. The gradual fatigue and decline, you see, none of this shows up on lab testing; it shows up on a spouse's well-worn face from how many sleepless nights they had worried sick with exhaustion in between our visits for their loved one, our patient.
Often patients may try to put their best foot forward in the clinic visit for us, but the reality of their total existence, their real existence, can be very different outside the lines of the clinic day. We have to look deeper. We have to want to look deeper. And it is in these between-the-visit moments, when real life actually occurs, moments in which patients experience the daily triumphs and tragedies of life and all of the mundane, but necessary moments in between, which just cannot be captured in an updated problem list or a lab result.
It is, in the end, in between the clinic visits in which real life takes place, and where the full story of the patient's existence, their livelihood, their humanity is truly residing, and we must strive to know more about this life “outside of the clinic” as this is indeed a person's real-life story unfolding, waiting to be heard. Let the silence in the clinic be that portal into our patient's life out of the clinic, their life “in between visits.”
NAVEEN PEMMARAJU, MD, is Assistant Professor, Department of Leukemia, The University of Texas MD Anderson Cancer Center, Houston.
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