Letters From Cancerland
By April Nelson
Published: Apr 16, 2013 12:34 pm
Myeloma is measured by the numbers. Those of us with it are always counting on our fingers, tallying our gains and losses.
We know our IgG number. We know our M-spike. We can reel off our free light chain kappa/lambda ratio. Our hemoglobin, our red blood cell count, our creatinine levels, our neutrophil count – we know them all.
Some of us keep detailed spreadsheets, tracking our lab results over long periods of time. Doing this is yet another tool to try to control the uncontrollable. I admit, I used to keep those spreadsheets. With those sheets, I watched my relapse come in slowly like a rising tide. When my oncologist and I agreed to resume treatment, I stopped tracking my lab results. I ask about them during my appointments, but I do not capture them anymore. The dike is already breached.
Yes, myeloma – its progression, its recession – is highly suited to being charted and graphed. We measure and chart our numbers, trying to make sense of them, hoping we are not reading tea leaves.
Lately, it is the language of myeloma, indeed of Cancerland, to which I have been paying closer attention. In my rush to chart my myeloma, I forgot how much is said and unsaid. Now that I am listening more closely, the language is starting to get to me.
We have our own lingo in Cancerland. Cancerese, if you will. We speak it freely; it is the tourists that don’t always get it. The tourists think we are talking about chemotherapy, but what we are really asking is whether the water is safe to drink. They try hard to learn it and understand it, but sometimes the gulf is too great. Recently, a very well-meaning, goodhearted, loving friend, upon hearing of my good March lab results (there’s those numbers again!), wrote: “Anyway, it’s nice to know the cancer is headed in the right direction…gone!”
No, it’s not gone. My myeloma is being squashed back down to remission levels, but it’s not gone. I want to say, “Don’t you get it? Chronic means forever. Incurable means this will kill me if I go on with it long enough.” I wondered if I spoke really slowly and very loudly, the way an only Spanish-speaking relative once did to me when trying to make me understand her Spanish, I could make all those tourists hear me.
But it’s not their fault, my friend and all those others.
We live in a country where death and incurable illnesses are not talked about openly. Dr. Otis Webb Brawley, chief medical officer for the American Cancer Society, wrote that Americans “cannot accept that death will come.” Fellow Myeloma Beacon columnist Pat Killingsworth can probably attest to that. His March column about death and dying probably set a record for number of reader responses.
Sometimes those words that go unsaid need to be said aloud.
And then there are the words that don’t get said out loud, but slip to the surface all the same, like graffiti on a wall or, in my case, a progress note in a patient file.
While waiting for a Velcade (bortezomib) injection to be prepared, I picked up my file and started skimming it. My oncologist’s progress notes, which I never see, were in a back section, and I flipped through them from oldest to newest. There were numerous positive reports in my “good” years. Then in October, 2012, my oncologist noted “a constellation of symptom [and lab results are] ominous for clinical deterioration and progression of disease.”
Look up ominous in a dictionary and you will get a definition similar to this: “being or exhibiting an omen, [especially] foreboding or foreshadowing evil.”
It is an interesting word choice for my oncologist. It is not one I have ever heard him utter in our many years together. What he told me at the time was that he was not alarmed at my symptoms, but that I had definitely caught his attention. That is reflected in the same progress notes. What he told himself in writing up the appointment was that my symptoms were foreboding.
Downright ominous, in fact.
I don’t know how I feel about discovering that word in my notes. I think I would have preferred to hear it to my face. It is certainly something I will bring up with my oncologist when I see him today.
Clear communication is important on both sides of the patient/oncologist relationship. It strengthens our ability to work together to reach the best treatment decisions.
We also need clear communication when tourists come through Cancerland. We need to have honest discussions about myeloma with our friends and family so that neither side pins unrealistic demands and expectations on the other.
And we need clear communication when we count our numbers, our precise little myeloma numbers. We need it when we are counting our blood cells, we need it when we are counting our meds, and we need it when, despite the ominous potential inherent in the disease, we are counting our hopes.