Myeloma Rocket Scientist: Calibration
“Calibration” is a good engineering word. It means “to check, adjust, or determine by comparison with a standard; to make corrections in.” We use the word quite a lot in both technical and general contexts. It also seems to me to have many applications when dealing with multiple myeloma.
Let me start out with some examples of the use of the word in my work at NASA.
The mission that I am working on is flying four spacecraft in a tight formation in order to carry out detailed scientific measurements of the magnetic field of the earth. Formation flying in space is very different from what the Blue Angels do, since spacecraft must use their fuel sparingly. It is not possible to refuel satellites, so once they use up the fuel they were launched with, their mission is over.
What we do for our mission is to fire thrusters briefly, about every month, to put the satellites on orbits that coast around each other in a good formation. These have to be very precise maneuvers, and it is important for us to know how accurate they actually turn out to be. Consequently, after each maneuver we use tracking data to measure how far the orbits are from where we expected them to be, and produce a “Maneuver Calibration Report” that describes these results.
At NASA, we also talk about becoming calibrated to a new problem or mission. For instance, someone who is used to working on Moon lander missions, where landing can be a violent event that is difficult for a spacecraft to survive, would have to make a big adjustment if they started work on a comet lander. The gravity of a comet is so low that the entire spacecraft can weigh as much as a paperclip would on Earth. The problem then is not to survive the landing, but rather not to bounce off afterwards and float away into space. The engineer has to become recalibrated to this new problem.
In a less technical application, inter-personal relationships (even engineers have to deal with these) can require careful calibration too. For instance, if Person A tells you “We have a real problem,” it would be natural to give more weight to this warning than to Person B’s “I’m slightly concerned.” However, a listener who is calibrated to the two speakers may know that the statement from Person B indicates a severe problem, while Person A's statement probably is due to a minor glitch.
In similar vein, I once talked with the person at NASA Johnson Space Center in Houston who was in charge of astronaut selection. He told me how British understatement could cause problems when interpreting reference letters for candidates who had attended the Empire Test Pilots’ School in England. He had to calibrate himself enough to realize that “He is an adequate pilot” in British-speak actually meant “He is outstanding.”
There are many types of calibration required for the myeloma patient, starting of course with the significant recalibration that comes with diagnosis as well as new expectations concerning life expectancy. The patient also has to become calibrated to the idea of undergoing intense medical treatments where not only the potential benefits, but also the possible side effects, go beyond what a lifetime of “normal” experiences prepares you for.
I am very aware that I have been lucky, in that my myeloma experiences so far have been better than those of many others. For instance, I did not require treatment for seven years after my stem cell transplant in 2007.
Even so, I have sometimes faced difficult recalibrations. One such time came in late 2013, when my IgA reading increased enough that my oncologist decided to finally put me back on treatment. (My kappa light chains had been creeping up since late 2011, indicating that something was afoot. However, that increase was not by itself enough to merit treatment.) Somehow, going from a person who did not require treatment to one who again did was quite a mental recalibration.
Another form of calibration involved deciding on my exact treatment. In January 2014, I started taking 15 mg of Revlimid (lenalidomide) at the usual 21 out of every 28 day schedule. However, this schedule produced various side effects, notably neuropathy in my feet, which added to the irreversible neuropathy produced by my thalidomide (Thalomid) induction therapy. It also did not do a good job of controlling my IgA and kappa light chain numbers.
After a few months, we therefore reduced the Revlimid to 10 mg (to reduce the side effects) and added my favorite drug (sarcasm!) dexamethasone (Decadron) to better control the myeloma. At first, I took the dex in 40 mg doses three Saturdays out of four. This new schedule did a better job of controlling my readings, but I found the side effects hard to take. We then tried the dex three Saturdays at 20 mg: the side effects felt nearly as bad as before, but the treatment was less effective. We then tried 40 mg of dex one Saturday per month: this schedule was easier to take, but did not keep my numbers down.
We finally settled on the monthly dex, but with the addition of the antibiotic clarithromycin (Biaxin) for the week that includes the dex. This treatment has been effective at driving my IgA and kappa readings slowly down, and only messes up one weekend per month, which I (and those around me!) can tolerate. So, a series of recalibrations of my treatment eventually came up with a winner.
I’m pretty much recalibrated now to think of myself as someone who may have to be on treatment indefinitely, but hope springs eternal. With myeloma, you never know.
Trevor Williams is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Great article Trevor!
We worked in a field where the word calibration was used often and your use of it with multiple myeloma is apropos. Like you, we have certainly recalibrated our lives since my husband's diagnosis 20 months ago, and we have recalibrated his treatment regimen several times.
I think it is awesome that you still work. We had retired just a year before my husband's diagnosis and we thank God for that since we do not believe we could have maintained our busy schedules along with his treatments.
Thanks for sharing your experience and reminding us of the adjustments you make with multiple myeloma.
Good analogies here. Lots of calibration going on with multiple myeloma and the numerous treatment options. I am currently down-dosing my pomalidomide. The fatigue and weakness became intolerable. Glad to hear you have found a work around for the Revlimid / dex.
Trevor,
Wow. I'm not proud to admit it, but I could have written this exact article, as I'm an engineer too. I get it.
More to the point. Numerous times during my diagnosis and workups I'd be asked, "On a scale of 1 to 10 how much pain are you in now?". (We can't just answer that with a single number, can we?) Even though I could be in serious back pain, my response would be "Well, since my compressed vertebra has recalibrated my definition of a 10, I'd say I'm at 4". I had to throw in 'recalibrated', how funny.
I've since learned a bone marrow biopsy is probably an 8. A 4 has my complete attention as to resolving it soon, I always thought I had a high threshold for pain until my ER visit for the compressed vertebra.
Being a frugal engineer, a better question to ask me might be "How much is it worth to you to get rid of the pain for the rest of the day?"
I was in more pain for weeks before my diagnosis than I was after my heart surgery. Today, pain really isn't an issue.
Thanks, Trevor!
I was interested in how you explained about calibration related to engineering and then applied the concept to multiple myeloma. Yes, guess that calibration for us patients of our treatment is what we have to deal with. Maybe "hope" can be a constant!
Trevor, thanks for this on 'calibration.' My hematologist reduced my dex from 40 mg to 20 mg and spread it over two days (10 on the Velcade day and 10 the day after). This, along with 30-40 minutes of walking, has helped me avoid a lot of the nasty side effects you and others refer to.
Thanks for the interesting column, Trevor, and sharing about how calibration is used at NASA for space missions! Also know what you mean about trying to 'calibrate' medications for myeloma. I think it is almost impossible to adjust meds to the point where they have no side effects!
I wanted to share a book suggestion- 'Up and Down' by Terry Fallis (2012, McClelland Press). This book is a novel about a contest run from NASA to put an ordinary citizen into space on a shuttle launch. There would be one Canadian and one American winner. Well written, and funny satire. Fallis is a renowned Canadian humorist.
Great analogy, Trevor!
I hope your recent treatment recalibrations work so well for you that you will need to recalibrate your personal definition of "long remission."
Mike
Great article, Trevor, thank you!
I just discovered this week that I too must recalibrate; and not for my engineering, but for another bout with myeloma. Your attitude is a major defensive weapon and I look forward to seeing and sharing this very powerful weapon with you.
The Myeloma Beacon is also a new and valued friend.
Steve
Patty - Thanks for your comments. I hope your husband is doing well. I am definitely grateful that I can still work; I had to take time off during part of my induction therapy, but fortunately not since then. My wife is glad that I can work too, as she’s pretty sure that I would go crazy, and drive her crazy, if I wasn’t!
John - I’ve never been on pomalidomide, so can’t imagine what the side effects are like. My main problem with Revlimid is the “gastrointestinal distress”, to put it as politely as possible, which seems to come and go for me.
Craig - Thanks for the comments from a fellow engineer. The point about recalibrating pain thresholds was a good one. On the subject of engineering, I suppose you’ve heard the joke: “The pessimist sees a glass that’s half empty. The optimist sees a glass that’s half full. The engineer sees a glass that’s twice as large as it needs to be.”
Sylvia - Good point about hope!
Joel - That’s interesting about how splitting your dex dose worked for you. For me, reducing the dose from 40 mg to 20 mg didn’t really make it much easier to take. Talking with other patients, I’m struck how different everyone’s experiences are with dex. I don’t think anyone likes it, but some seem to tolerate it a lot better than others.
Nancy - You are so right about side effects! Thanks also for the tip about the book. I hadn’t heard of it, but it sounds intriguing. I have ordered it online, and am looking forward to trying it out.
Mike - I hope so too! Thanks.
Steve - I hope things go well for you in your new bout with myeloma. It really is the disease that keeps on giving, isn't it?
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