Letters From Cancerland: The Numbers We Count, The Words We Speak
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.”
Ominous? Ominous?
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.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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Great article!
Good luck in this treatment!
Julia
April, Thanks for the great article. I'm in remission and am trying to balance positive and realistic thinking. I find my family rejects any thought that this is chronic and will return at some point in my life. I had to laugh about tracking the numbers; I too stopped and when I need to know I can look it up.
Good healing,
Cindy
My onc says very little, mostly nothing at all. Today I said I felt "altered" by this whole experience, meaning psychologically changed from who I was before diagnosis, that I am now in my 5th year. He merely said, "the median survival is longer in myeloma than most cancers." I wish he would say, "Don't think too much about this." I do. I count my days, not knowing what to think with the years adding up. I once saw his notes, in the beginning: "unfortunate," he wrote.
Sums it up. Suzanne
April
I enjoyed your up front article. I am a professional engineer by genetics and guess I will never stop charting my numbers. Numbers fascinate me, not individually, but statistically, the patterns they produce. I have seen in my numbers step changes, for the good, when I started treatments with herbs and vitamins and minerals and juicing. No doubt we all try these things but some make quantifiable changes. So we can keep these and discard the ones that seem to be doing nothing, if we wish.
My friend's find it difficult to believe that I have a terminal disease, because, right now I look and feel really well compared to the worn out person I was 2 years ago. Most people look at us and think, we have it beat. "You look so good", but its not my face that hurts. Our illness is hidden deep down inside and we measure it with blood test results. When one measures something, and tries to react to improve the situation, it usually improves.
We have not just our oncologist to help us, there are many other fields of wellness to be tried. Keep charting and trying other fields of wellness, we never know what can kick start a reversal in our wonderfully designed immune system.
Thanks again for your frank and up front discussion of your feelings and situation. You make all of us that much stronger because you truly understand. Take care of yourself and perhaps ominous was just a bad choice of words for your oncologist that day.
My onc in Augusta wrote that I had a "firm" grasp and understanding of my treatment. To this day, I do not really understand this disease! I do check my "numbers" in regards to my M-Spike. But I also see an hematologist onocologist here in Savannah, who does not say much! He told me I had relapsed ( due toa blood test result), and he briefed me on the CYBORG regime of meds. But he did a blood test that day and rushed it through, and it came back clear!!! Zero-zip, nada! He asked me if I prayed! It old him "of course I do, whoever has this cancer prays!
Turns out it was a "funky" bad test. So far I am still in remission, and again, back to watching my numbers!
April, I guess the point is like you wrote - we need our Drs to be our advocates, involved I letting us know what wearied exalting with, and tell us what we have as options.
Hi April,
Another great article, thank you. I too was a charter in the early stages. I even worked out the gradient of the slope between treatments. This was in the hope I would see a downward trend in the growth of the myeloma. Did it change things? - no, so after a while I stopped charting.
Some of my friends understand the significance of myeloma and my current status. They do not bring their children to our place if they are sick. Others see me as looking well so they think I must be. A few friends are also doctors, I keep on surprising them by still being here.
It must have been a shock to see the word "ominous" written. If ominous equates to " definitely caught his attention" I wonder what his translation of "alarmed" would be?
Take care and I look forward to reading your next instalment.
Hi April, Thanks for your good April column...is your birthday in April? If so, Happy Birthday too.
That is a neat analogy about 'tourists' in Cancerland..probably most people don't know what to say to patients. When people ask me about my health, I can tell them I am fine. Sometimes I add that I still need to get my blood tested every three months...they can sense then that a myeloma patient isn't really in the clear indefinitely, as are some other cancer survivors. I hope that your health improves quickly and that you are soon in remission again! it's not selfish to get enough rest and look after yourself that way...it's common sense I think! Only you can really know what your energy levels are, especially since you are taking chemotherapy drugs again. It must have been an adjustment from your previous routine. Best wishes to you and your family!
My husband has myeloma. As a "tourist in cancer land" I would just like to comment that although we don't have the disease, we take every step with you, we watch the numbers as closely as you do, we know all too well what incurable means. Our hearts are broken too. Avoiding some conversations is one way to cope day to day but it does not mean that we don't understand the reality of this devastating disease. As for other people, it's not important that they know. Let them treat you as a well person, giving you the same respect they would anyone. No one wants to be guest of honour at a pity party. We are all just trying our best.
This post really struck a chord with me: like you, I am no longer tracking the minute details of the test results, lab reports, and so on. Indeed, to some great degree I am avoiding even staying abreast of developments... I read this website less, and have even unsubscribed from a number of other resources. Am I tired of it? Yes. Am I hiding? Maybe a bit. In any event, as Doris Day sang: "que sera, sera" and I might as well enjoy the ride as much as possible, and being right on top of my condition doesn't contribute to that.
I also heard you about the 'tourist' image, and have basically stopped talking to my friends and acquaintances about my cancer... it just isn't worth the trouble to me, and sometimes actually makes me frustrated and angry... but that's another story.
And I had to laugh at your reading of your doctor's notes! I read mine early on as well, and it was really rather hilarious! I have a woodstove, which I have used quite consistently for about 25 years. As a result of that, I have a small number of burn scars on my arms, including a handful on the tops of my fore-arms that run parallel to each other, horizontally. My onc has noticed them, and without comment to me about it, has noted in my chart that there is a high likelihood that I am a 'cutter': someone who self-mutilates, and that I may need to be observed/checked for depression. About a year after he wrote that I finally broached it with him... he nearly died of embarrassment
Anyhow... it was good to read your post today... thank you.
I have lived with my husband's multiple myeloma for six years. To me, it is harmful to become too immersed in the lab numbers. We look at them as basic indicators and guides to what treatments are warranted, but when we get home from our day at the hem/onc clinic, we put them aside and go about living as normal a life as we can. We visit the Beacon briefly throughout the week. Here, I look for advancements in therapies and practical advice. We don't really feel a need to talk about death. So much about that goes without saying for us, and we don't need loved ones or friends to talk about it, either.
One thing that bothers me a little is that my husband regularly asks other patients we see at the clinic about their disease and how their treatments are going, and they usually will start talking at length about themselves, rarely asking my husband how he is doing or even what kind of cancer he has. We joke to each other about that and then let it go.
My husband was recently diagnosed with myeloma, and very early on I saw the word "worrisome" in his oncologist's notes. Worrisome is a perfectly reasonable way to describe myeloma, but I willed meaning and intent into the word that I'm sure wasn't intended by our oncologist. I found myself wondering if worrisome was oncologist-speak for "poor prognosis" or for "the really, really bad kind" of myeloma. My intense focus on the word worrisome has subsided, but I wont' be at all surprised if it's replaced by some other seemingly innocuous word somewhere down the line.
Thanks for giving me the space to reflect on my own journey and to learn from your journey.
Well wishes everyone.
Just discovered your site. Was diagnoses in August 2010. Had stem cell transplant in Nov 2012. I find I cannot process the numbers as well as I probably should. But words are significant for me. Remission is an important one for me now. Ominous would have scared me too. I just try to see each dy as a gift and move on through the process.
April, thank you for those insights. Special meanings for words.
Yeah. Survivor. That's me. I am the poster boy of survivors--almost nine years now. I had my auto SCT in December, 2004, at the Hutchison facility, Puget Sound VA, in Seattle. The staff there is a band of heroes. They couldn't have done more to facilitate the treatment process for me and my wife.
Like most of us, as soon as I was diagnosed I went on the web and began collecting factoids. I was attuned to my progress in terms of light-chains and such, but it was all just so much chemical magic thrown at me, a mumbling cargo cultist, standing in a clearing shaking his fist at the gods. What I knew then was that my survival curve was nearly vertical, and no cure existed. What I found out was that a small army of medicos of various stripes refused to submit to the numbers, and that myeloma patients have a shot at a few more years of quality living if they are willing to try.
I ought to point out that the entire transplant procedure was more harrowing for immediate family members than it was for me. I was in the eye of the storm, more or less flowing with the stream during the worst of it. During the run up to the actual transplant I went every morning to the infusion room for various things; sat in the chair, usually among half a dozen other patients, and had a bag of something or other drip into my centerline catheter.
In a bizarre juxtaposition of realities, we watched TV, sound turned down just to the limit of audibility, but the banners and videos clearly demonstrated that, no matter how gloomy your situation is, worse things happen: that terrible tsunami in the south-western Pacific Ocean was wiping out people by the thousands, by the tens of thousands.
I stopped following my numbers when the dose that killed my immune system was administered, mostly because that phase of the procedure passed me over to the other side of the looking glass, and I really didn't care about anything except babbling curses at my day nurse, who kept making me get out of bed and take a shower. A chart on the wall across from my bed was supposed to keep me informed about what happened to my marrow after Day Zero, but I didn't care.
Anyhow, I had finally revisited the definition of survivor, and reaffirmed the notion I had come upon when I was an infantryman in Vietnam: it's a coin toss. The only thing that counts is which side of the coin you are on when it hits the ground. The part that matters is that you hang in there, and don't quit just because things seem tough.
I just found out this week that my myeloma has finally returned. I've barely gotten used to its absence. I'm headed up to Portland tomorrow for a biopsy that will help my oncologist determine the course of my next phase of treatment. I am happy to have made it this far. If I can continue to hang in there, maybe geriatric issues will get me before this damned cancer does.
As always, I enjoy reading comments. I smiled at how many of us have stopped tracking our numbers, deciding that life happens regardless!