Don’t worry, I didn’t hear the words, and I don’t expect to anytime soon.
The words that every cancer patient dreads are: “I’m sorry, there’s nothing more we can do for you.”
When you live with a long-term illness, medically classified as terminal, metaphorically speaking you travel hallways instead of paths, knowing that eventually you must come to a wall and not a door. At some level you have to come to terms with carrying-on like this lest you lose your will to persevere. You live within bounds. Bounds on longevity, bounds on medical options, bounds on help.
In reflecting upon my most recent visit to the treatment center, which was terrifically uneventful, I realize how wanting I felt upon leaving. I awoke early the following morning and, in order to quench the longing, sought fulfillment in prayer and Scripture. It was then that I realized that what I desired was wisdom, aid, and counsel, but the reality is that no matter the knowledge and expertise of professionals or even the depth of our relationships, there is a limit on what can be offered.
To paint the picture of a typical visit, I work my way around a circle of the clinic, a folder with my medical chart following me all the way. I begin through the front, sliding glass door into the main waiting room. I’m called back by medical assistants (MAs) in order to get my intravenous port accessed, blood drawn, weight checked, and urine tested. I then get called by another MA to be led to an examination room in order to measure vital signs and inquire about medications. That person then leaves and we wait for the doctor or nurse practitioner. Assuming there are no major concerns, I’m then sent to the treatment room at the back of the clinic. Here, the nurses take care of my physical needs, if any, and administer my drugs. When the bag of priceless pharmaceuticals has dripped dry, I exit the opposite end of the treatment room to return to the front waiting area and then outside to squint in the sunlight. Like any good assembly line, this clinic is a one-way operation.
Monday’s visit was the quickest yet of the nearly two years that I’ve been receiving treatment at Tennessee Oncology in Nashville, and for that I am thankful. There was nothing special that needed to be said or done for me, from a clinical standpoint. I saw my oncologist for the first time in many weeks, and for some reason I felt like I bored her (this is all my perception). I mentioned a few things about my physical condition while she sat, facing me, with my chart resting atop a red, plastic folder on her lap. She scribbled a few notes but said relatively little. Because of her reticence, I feared, perhaps hypochondriac-ally, that there were foreboding diagnostic numbers on the pages on which she wrote but were not yet conclusive, so not worth discussing. I told her about my recent visits with my urologist and how he didn’t see any fistulation that might disqualify me from subsequent clinical trials. I asked her about the articles that I had recently read that described how the experimental therapy that I currently receive had failed the randomized phase II study and was shelved for drug development. She emphasized that it was beneficial to some, including me, so we would stay the course, therapy-wise. What I had wanted to hear was something like, “great news about the fistula. When the time comes, there are several treatment options for you.” Instead, she was in and out and sent me on my way. So, while we didn’t hear the dreaded words, we didn’t hear the most desired words, either.
The treatment room has around 50 vinyl chairs for patients, each with a plastic and steel chair beside it for a caregiver. Often the chairs are mostly filled when I arrive and I have to wait a bit for a vacancy. A kiosk is stationed on the middle wall, and on it rests a metal file organizer. I must wait for my folder to be placed there, charting having been completed by the doctor and a research nurse. But this day it wasn’t terribly busy and I was directed to a seat fairly quickly. Because I’m on a clinical trial, I must first wait for a consultation with the research nurse, who examines the results of the blood and urine tests to assess my fitness for treatment and delivers the drugs that will be infused that morning and the pills to be administered daily at home. There is a rotation of these nurses, and I’m fond of them all. Typically, one will come and sit beside me to discuss how I’m feeling and even talk about our personal lives some. But this morning, the visit was brief. The research nurse was busy with special needs of new patients. She left beside me a bag containing an immunotherapy, which became the responsibility of the oncology nurses. Once ready, a nurse hung the pouch on an IV poll, connected it to narrow plastic tubing, routed that through an infusion pump, and then plugged into the port access line that was taped to my chest. The infusion rate was programmed and treatment was initiated. Once begun, it doesn’t take long. I was in and out and sent on my way again.
Before jumping into our car to drive home, the last person I see is a palliative care nurse. I haven’t always had this routine, but at some point over the past year or so it was determined that the stress of this battle was starting to affect me. I was told by several health care professionals that I was depressed. A palliative care nurse (or nurse practitioner, in this case) is trained to help improve the quality of life for patients dealing with serious illness. Though I like and appreciate the person who helps me, something about the attention on my overall well-being makes me uncomfortable; there are personal questions beyond those related to my physical symptoms which I don’t care to discuss in front of my fellow cancer patients. On this visit, when I was finished with the infusion, I simply left the clinic. We hadn’t even exited the parking deck before I received a phone call from her. She wanted to make sure I was doing OK, and I assured her that I was. But, honestly, I have yet to hear words from her, or even from the counselor that I have spoken with recently, that made the outlook of my current situation seem any brighter.
So, on this morning, the difficult day after treatment, I awoke early with a longing inside, and I was pulled from my bed to a chair on my screen porch to listen to the insects, watch birds fluttering about the feeders, and to fellowship with the Lord. At some point a thought struck me and caused me to remember what I needed to most remember. I do seek wisdom from my doctors. I want to hear that they’ve discovered or learned about new therapies and to believe that there is no limit to their ability to treat me because they fully understand the science and the medicine and my particular disease. But that isn’t possible.
I remembered that the best wisdom is knowing that it is well with my soul. That is not a prognosis, it is the permanent condition of salvation.
And the nurses who take care of me are wonderful. They are attentive, calm, kind, and reassuring, but the truth of the matter is they are administering prescribed care. They can give me medicine to fight the disease and even improve my symptoms, but it isn’t as if they can look inside me to determine all that is abnormal in order to totally alleviate my ailments. At best they can improve my symptoms.
I remembered that the best care is knowing that my sins are forgiven, even my doubt and anxiousness. Christ, when performing miracles to heal the sick, always forgave the sins, because He knows that sin is the wound that most needs a salve.
And finally, the counselors, including the genial, very competent palliative care nurse and a local therapist whom she recommended I see, both even believers in Christ, their words aren’t enough to fully comfort. It isn’t their fault. Anguish just can’t be talked away.
I remembered that the best counsel is knowing that God is in control. Matthew 26-27 reads, “26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life?” These words, like a salvo of incendiary tracers, pierce the darkness inside. Be still and know that I am God (Psalm 46:10).
If only for a moment before the busyness of the day begins, I close my eyes. Not in prayer, just being a small, quiet part of creation. I take refuge in the wisdom, care and comfort of the Father, the Son, and the Holy Spirit, and a peace settles in like dew on the lawn.
** Note: the picture comes from a Hungarian company that sells Salvus Spa Water, whatever that is.
** Did you know that I have a book? If you haven’t checked it out, see here: Two Stories