Myeloma Rocket Scientist: Note To Self – Multiple Myeloma Is Not Mainstream
It’s been so long now since I was diagnosed with multiple myeloma (11 years) that I sometimes forget that everyone around me isn’t in the same, or a similar, boat. This is particularly true given that it’s been so long since I was last in intensive treatment; I had my stem cell transplant 10 years ago in January. As a result, I generally feel like I’m trundling through life pretty much like everyone else, and I tend to forget that diseases like multiple myeloma are not all that widespread.
Occasionally, though, something comes along to remind me that I am not exactly in the “normal” category.
Of course, seeing a mention of multiple myeloma or Revlimid (lenalidomide) in the newspaper and knowing what these words mean is one sure sign of being an outlier.
Another sign is your reaction to the phrase “It’s like [insert topic here] on steroids.” To the general public, this phrase refers to anabolic steroids, as used by athletes to bulk up their muscles. However, to myeloma patients, it most often brings to mind the corticosteroid dexamethasone (Decadron), which has an entirely different set of effects. To me these days, something being described as “on steroids” implies not being able to sleep, turning alternately yellow and red in the face, being either a bit “hyper” or “low,” plus of course becoming argumentative and extremely hungry. None of this, unfortunately, has anything at all to do with building up musculature.
Another time when I realize that multiple myeloma is out of the mainstream is when I go to the local blood testing center to have my blood drawn the week before a checkup with my oncologist.
For over a year, I had monthly checkups, which definitely made me a regular. Sometimes when I enter the testing center, it reminds me of the old sitcom “Cheers” with its theme song line “Where everybody knows your name.” There was a time when all four staff members greeted me warmly when I arrived. It really was like those scenes in “Cheers” when George Wendt’s character arrived and everyone at the bar shouted “Norm!”
Getting your blood drawn so frequently that they remember you, plus having such obscure tests ordered that you have to help them find them in their computer system, definitely does not happen to “regular” people.
In similar vein (ha ha), a couple years ago I went for a flu shot at work. The nurse administering the shot told me to relax, presumably either because I was fidgeting, or perhaps because she says that to everyone. I was very tempted to tell her, “This tiny little needle really doesn’t worry me. Do you have any idea how many times I’ve been stuck over the years?,” but somehow managed to contain myself. Actually, I don’t know the precise answer to this question, but I occasionally do a rough mental estimate and come up with a number somewhere between 50 and 100. Again, this is probably not the experience of regular folks.
And then there are the unsolicited letters for life insurance that we receive in the mail every once in a while. These offers seem very attractive because they do not require a medical. Instead, all you have to do is “just answer a few health questions.” The clear implication is that anyone would be able to give the right answers to these questions, and therefore qualify.
Every time one of these offers comes, I can’t resist trying the questions to see how I will do. It always starts out alright:
“Have you used nicotine in the past 12 months?” No. So far so good.
“Are you in hospital or in an assisted living facility?” No. Looking good.
“Have you been convicted of a felony?” No. I’m feeling lucky.
“Have you been convicted of DUI in the past 5 years?” No. This is too easy.
But then:
“Have you been treated for cancer in the past 5 years?” Yes. Oh well. Close but no cigar.
This is the sort of thing that definitely makes you realize that you’re not in the mainstream.
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 .
Trevor - you are absolutely correct - having multiple myeloma is not mainstream. With your 11 years and counting, you are an inspiration to us. We can identify with everything you have mentioned. Keep those columns with your stories, musings, and experiences coming. We truly appreciate them.
Yep. Good column.
"It's not easy being green."
Kermit, the Frog
Having blood drawn weekly plus Velcade shots so I can relate to feeling like pin cushion. I never had a port put in, so I alternate arms for blood draw and sides of my belly for the Velcade shots. That way there is some time for the bruising to fade. I guess I am lucky to have "good" veins.
I was diagnosed 7.5 years ago with smoldering multiple myeloma and have - to my shock - managed to get by without treatment since then despite having certain markers that put me at a very "high risk" of progressing to symptomatic multiple myeloma. I can relate to the feeling of being reminded (often in subtle ways) that this diagnosis has altered my situation and outlook. One example is that, while others don't hesitate to plan trips and other events a year or more in the future, I almost never plan anything more than 2 or 3 months ahead because I don't know if my health will have deteriorated by then. That hasn't stopped me from travelling a lot, and I have learned to take advantage of travel insurance, but I think others don't quite understand what it's like to have a serious disease that can change course at any time and with little warning. On the bright side, I am focusing less on career advancement and more on enjoying life in ways that I never allowed myself to do before the diagnosis. So it's not all bad, but definitely not "normal"!
Yep, always love it when I get something in the mail from a life insurance company that advertises, "No one turned down!" But one of the questions is, "Have you been treated for cancer in the past 5 years?" Try STILL being treated and WILL BE treated until it kills me or a cure is found! They won't touch me with a 10-foot pole!
I know that myeloma is not mainstream since am still trying to describe it and the treatments used to friends and acquaintances! I think that most people think I am cured of it, but of course it is always a worry! Not many people in the general population have taken any of the treatments that we patients have! Thanks for your columns, Trevor.
Hello Trevor and thanks for your “light and airy” article. I have to ask you something: aside from being reminded about the illness in the ways you said, after 11 years and without taking medicines (if I understood right), does one really forget about the danger, or is the worry always in the back of your mind? I feel that more than the external facts, blood tests and checks, it is the fear of the relapse, of pain and maybe death, that makes me feel outside the mainstream. It’s when they ask me “how are you?” and I answer “very well, thanks” and I think to myself “who knows for how much longer.”
Two months ago, I fell from the bike, a silly accident due to a miscalculation in the nature of the terrain. I broke two bones in my foot, wore a cast for a long time, and now I wear a special boot and walk with crutches, but in one or two weeks I should be able to walk normally again. Well, I can see the difference between this kind of accident, which I will hopefully forget about soon, and the ever present myeloma.
The foot accident, however, made me look at the situation in a different manner. In 2015 I relapsed and was very ill for a couple of months. Revlimid, which I hadn’t used before, got me out of the bad situation. Since last year on, I have been in very good shape, with lots of energy, good color, and perfect weight. So when I look back at the time before the fall, I see an Annamaria who walks at the same speed of the others, goes out to art shows and restaurants, and goes swimming regularly. And I think: “If the price for this is taking Revlimid and cortisone, bless those medicines!” and I don’t hate dex anymore. Revlimid’s only side effect on me is sleepiness; I sleep at least 10 hours per day. But when I am awake, I am fine. Dex, we all know what it does to you…but I discovered that Advil PM is a better solution against insomnia than tranquillizers.
At the hospital where I have my monthly checks, there is a man who was diagnosed five years ago like me. Revlimid stopped working for him, and he has just started Darzalex, initially with long infusions, six or seven hours weekly. If it works he will live, if not he has six months of life. I can’t help thinking that on average Revlimid works for 18 months, which is exactly where I am, and the next person on those beds could me. Brr. No, it won’t be, I have good colors and lots of energy, and soon I will be able to walk normally again and go to art shows, restaurants and pools. And in July, we will rent an apartment in an adorable village called Capalbio, near the sea, only a couple of hours from Rome. And I say to myself, "Let’s be optimistic and believe I’ll enjoy the vacation."
50 to 100 sticks? Really, is that all? I couldn't begin to estimate all the countless infusion sticks I've had, but when the oncology nurses are struggling to poke my scarred veins with those tiny 23-gauge needles for my seemingly never ending infusions, I sometimes remind them of my latest self-cannulation count.
Currently it is in excess of 1,400, 15-gauge needle, cannulations with no infections and no infiltrations. Probably they don't appreciate my mild needling of their abilities while they are needling me.
I hope “better late than never” applies here. I’ve really been snowed under lately at work. We’re partway through several months of spacecraft maneuvers that we have been planning for about a decade. They are going very well, but have involved a lot of overtime, weekend and night shifts, etc. Today is one of those days where I feel energetic from dex, so am trying to take advantage of that to get caught up on these comments, in between eating (I have just finished my fifth meal of the day!).
Patty and John – Thanks very much for the encouragement.
Ron – Since I’m left-handed, I always have them put my IVs in my right arm. I’m not sure if it’s logical, but it perhaps makes some sort of sense. I have quite prominent veins, so the nurses usually don’t have problems. The exception was the time when one of them said how easy it would be with such big targets. She ended up trying to hit a vein twice, failing, and having to be replaced by a different nurse to finish up.
Jason – Congratulations on making it for so long without treatment! Yes, the underlying uncertainty definitely makes for a “new normal”. One equivalent to your not wanting to plan far into the future is related to our spacecraft. The official mission ends this August, but we expect to have fuel remaining, so we are planning to continue flying in an “extended mission”. I’m enjoying this planning now, but back when I started on the project 9 years ago, I didn’t like any discussion of an extended mission, as I wasn’t at all sure that I would even make it to launch!
Susan – Absolutely! Talk about a pre-existing condition ...
Nancy – It’s good to hear from you again. Yes, if you seem healthy, I think people sometimes tend to think that you’re over multiple myeloma. I had someone talk to me once about “that disease you used to have”, as if it’s over and done with: I wish!
Annamaria – I am naturally a worrier about most things, so definitely have never got over worrying about multiple myeloma. Work definitely helps to take my mind off it though. It’s not quite accurate to say that I’ve had 11 years without treatment: the first year (to the day) of the 11 was taken up with induction therapy and then transplant, after which I had 7 years without treatment before going on Revlimid and then dex in early 2014. I think that the worst time for me from the point of view of worrying was the last year or two of the 7 years, when my light chains were creeping up and it was clear that the disease was, to some then-unknowable extent, coming back. I really didn’t know how bad it was going to be, or what I would have to do about it, so it was pretty unsettling. But Revlimid and dex have done a very good job pushing me back into official complete remission. I have more side effects from Revlimid (the details of which I will not go into here!) than you do, but it is still working after over 3 years. I would therefore not pay too much attention to the statement that Revlimid only works on average for 18 months. You just never know how things will work out for you. In similar fashion, what I had read about transplants was that they would work for probably 2-3 years; instead, I got 7 years out of mine. As we all know only too well, statistics are things that you have to be careful about, since they tell you what will happen for an entire population, but not for any given individual.
David – You’re definitely in a whole different league from me! My estimate of 50-100 is very rough, and just based on spending 11 years with sometimes quarterly blood tests (giving 44 total), sometimes monthly (giving 132). Fortunately, I’ve never had to learn to inject myself. I was too cowardly to even clean my port back when I had one; instead, since we lived near the hospital, I used to go in every few days for the nurses to do it.
Hello Trevor,
Once again, I love to read your point of view. Plus that you are 10 years post stem cell transplant is so encouraging. Your description of Cheers really resonated with me. Now I have a port again, yet the lab has to use my peripheral veins. I cannot even count. Yet what is weird is that I'm getting more sensitive to blood draws. Have to focus on breathing so I don't pull away.
Thanks again for sharing your journey with us.
Maureen
Trevor,
As an exercise, I tried to estimate how many "successful" infusion sticks that I have had. My best count is over 110. Note that two Kyprolis infusions use the same needle stick on back-to-back days, so that held down the "successful" number. Then I tried to estimate the TOTAL number of sticks required to achieve the successful ones. These are more than double the successes due to infiltrations, vein blow outs, vein scarring, poor sticking techniques on my rolling veins, etc.
I've never had a port and don't have sticks for blood samples because they are drawn through dialysis lines. I've a do-it-myself attitude, and am getting to the point where I'd stick myself for infusions as well as cannulations, but the remaining good veins are underneath my arm and aren't visible to me.
Most people have their best veins in their non-dominant arm so your right arm should be your best choice.
May your future sticks always be simple blood tests rather than infusions. That might make a good toast at a multiple myeloma gathering.