Myeloma Rocket Scientist: A Walter Cronkite Moment
As an engineer, my professional life is governed by numbers: how many kilograms of fuel will it take to perform a maneuver, how many degrees should we rotate the spacecraft towards the Sun, etc.
My life as a myeloma patient is also dominated by numbers: IgA and kappa light chain readings, Revlimid (lenalidomide) and dexamethasone (Decadron) doses, and so on.
With this focus on numbers, it is probably not surprising that I tend to remember dates. For instance, I always mark the anniversary of my stem cell transplant.
Another key date for me, as for many other myeloma patients, is that of my diagnosis. In a way, this doesn’t make much sense, as nothing physical really changed then. I had been feeling ill for quite a few months before my diagnosis, and would continue to do so for many months afterwards. However, the significance of diagnosis is presumably that it marks a known, definite point in the transition from not having cancer to having it.
Like just about everyone who has myeloma, I have no idea when the first of my plasma cells went bad and my cancer began. I couldn't guess that date to the nearest year ... or even the nearest decade. I therefore certainly can’t mark that event in any way. However, diagnosis is something that you know about. I remember the date every year, even though it certainly wasn’t the happiest of days!
Basically, the number of years since diagnosis serves as one marker of how long I have made it with myeloma. Other such markers are New Year’s Day and my birthday. As a cancer survivor, each birthday becomes an indicator of success that you have made it through another year. The American Cancer Society’s slogan “The official sponsor of birthdays” reflects this. That’s how I have felt ever since diagnosis.
I must admit, though, that since I’ve been doing so well for so long now, there is lately an element of “How on Earth did I get to be so old?” superimposed on the “I made it another year!” But it’s a not a bad problem to have.
This year was quite a benchmark: March 8 marked 10 years since my diagnosis.
At the time, I really did not expect to still be around at this point. The data I saw online at that time always referred to a median overall survival of three years. I was still very “green” then about multiple myeloma, which was a disease that I had never heard of. Also, I was feeling quite ill, so I was not doing all that well at focusing on the information I was reading.
I was so confused in those early days that I did not even know how to describe myeloma to others. The oncologist/hematologist who coordinated my initial testing and diagnosis described it as “a disorder of the blood.” I therefore called it that in an email I sent out to my colleagues right after diagnosis. I imagine that they must have thought that I was in denial about having cancer. I really wasn’t; I was just confused!
It was certainly an overwhelming time, with a feeling of great uncertainty as to what the future might hold. I don’t know exactly what I expected, but it was definitely not to still be working and leading an essentially normal life 10 years later.
I marked the tenth anniversary of my diagnosis in a way that makes perfect sense to a space enthusiast: I flew to London to see an exhibition of Soviet spacecraft in the Science Museum. Most of these have never been exhibited outside Russia before, and the exhibition closed on March 13, so it seemed the ideal opportunity.
It was a thrill to see the lunar lander that was the Soviet competitor to Apollo, but in the end never flew. In fact, its existence was a secret for two decades. I have seen photos of it, but I never imagined that I would be able to see it “in the flesh.” Seeing it on March 8 was quite an experience: I sat in front of it for ages with a goofy grin on my face. I must have looked faintly ridiculous.
I don’t have any profound insights to impart on this anniversary. In that respect, it reminds me of another space enthusiast, the noted broadcaster Walter Cronkite.
He was friends with the early astronauts such as John Glenn, as well as with President Kennedy, and covered the space program throughout its early days. He even hoped to fly on the Space Shuttle before NASA cancelled the Journalist in Space program following the loss of “Challenger.”
Cronkite was a broadcasting legend, but even he was somewhat lost for words during the live coverage of the Apollo 11 moon landing. Cronkite’s comments to his co-anchor, ex-astronaut Wally Schirra, right after the lunar module touched down run as follows: “Man on the Moon! Oh boy. Phew. Boy!”
In the current circumstances, I don’t think I can do any better than that: “Ten years! Oh boy. Phew. Boy!”
Trevor Williams is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
It gives me comfort to read your article. Happy 10 year anniversary. I start my stem cell transplant in a couple of weeks. After having a very painful back, the cancer was discovered this last November of 2015. Again, your column gives me hope. This is in fact my second round of having cancer. I beat breast cancer in 2006. We can do this too! Take care,
Laurie
Hello Trevor and Happy Diagnosis Anniversary.
I was diagnosed on January 22 this year. I had been feeling very fatigued prior to Christmas and finally went to see a doctor January 14. I received my blood test results and within a week I was referred to the renal clinic at our Royal Brisbane Hospital, as kidney function was down to 18. I was admitted and further tests proved I had multiple myeloma.
I commenced subq Velcade twice a week for 2 cycles and dexamethasone and 10 weekly cyclophosphamide tabs on January 28. All so quick on treatment. I am onto my 3rd cycle of now only 1 Velcade per week. I am booked in for my big dose of intravenous cyclo on April 8, then daily injections to stimulate cell growth. April 18/19 collection of my cells in preparation for my stem cell transplant sometime after June.
You give me hope as I am staying as positive as each day brings. Take care and my best of luck. Christine from Brisbane, Australia
Awesome - I had stem cell transplant in September 2014.
Yippee!! And doing well too! What a thing to celebrate! I'm looking at eight years this May. And I'm doing well too.
Congratulations, Julia Munson
Congratulations, Trevor.
I'm starting my 7th year in remission since my stem cell transplant and feeling great on a daily Aspro 75.
What keeps me going are the words of that other famous spaceman, Buzz Lightyear. So to all myeloma survivors everywhere, I say "To infinity and beyond".
Congrats!!
Here's to at least 10 more years for all of us!!
Congratulations Trevor! What an inspiration you are to those of us who have just begun our myeloma journey. Ten years! Oh boy. Phew. Boy! There are several Beacon contributors who have seen ten years since diagnosis. Much of the multiple myeloma literature is not so optimistic. We hope and pray that our own journey is a very long one. Thanks for keeping us up-to-date.
Hi Trevor - Congratulations on your 10 years as a myeloma survivor. I am also a a long-time survivor diagnosed in 2005. I went 9 1/2 years before it revved its big head again. Stem cell transplant last summer and I see you make it 5 more years. Every year I see a myeloma survivor it's an extra year for all us. Stay strong and have nice Easter.
Laurie - I’m glad you found the column encouraging. I hope your transplant goes well, and that it gives you a good long time in remission! You deserve it, having already gone through cancer treatment before.
Christine - It sounds like they were quick with your diagnosis, which is good. I’ve never had Velcade, but am (unfortunately) fairly familiar with dex. The more I experience it, the less I like it, but it seems to be a necessary evil with myeloma. Best wishes for your transplant! If you ever feel the need for a road trip from Brisbane later on, you could go take a look at the ground station that NASA uses: we call it Canberra, but it’s more accurately in Tidbinbilla. (I’ve never actually been, so am not sure what there is to see there, but it would definitely be interesting, at least for a geek like me.)
Lorraine - Thanks! I hope your stem cell transplant keeps you doing well.
Julia - Congratulations (a bit early) for your eighth anniversary in May!
Mervyn - Congratulations on starting your seventh year (so far) of remission! And, of course, there’s that other famous space phrase (even though Gene Kranz didn’t actually say it during Apollo 13): “Failure is not an option.”
Steve - Thanks. Hear, hear!
Patty - Thanks for your well wishes. I know what you mean about the myeloma literature: I still remember that everything I read when I was first diagnosed talked about an overall survival of three years. I suppose that the statistics must always lag reality: for instance, ten-year survival numbers have to be based on patients who were diagnosed at least ten years ago. These numbers therefore cannot reflect the newest treatments. Back when I was diagnosed in 2006, thalidomide / dex was a cutting-edge induction therapy: it is now virtually obsolete in the U.S., but ten-year survival numbers can’t really reflect any treatments newer than it yet. So, the literature will always be somewhat more negative than the current state of affairs; people should try not to get too discouraged when researching their situation.
Mark - Congratulations on being such a long-time survivor! Thanks for the wishes for a good Easter. I hope you had a nice day also.
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