Myeloma, Party Of Two: Unwanted Visitors
It was a hot, sunny day. My husband Daniel had spent most of it clearing entrenched, obstinate English ivy from our fence. He enjoys yard work and the exercise was good for him, so I left him to it. Later on that night, a red, blistery rash appeared all over his hands, arms, neck, and legs. It would seem that some of the vines were mixed with poison ivy.
Taking the advice of a physician assistant, Daniel applied copious amounts of Zanfel and Caladryl until the rash was under control. This helped abate the itching and the burning that were initially unpleasant. The blisters are mostly gone now, but the raised, angry marks remain – shouting their warning from a plague-like megaphone, “An unwelcome visitor was here!”
Poison ivy has definitely left its mark.
Aside from looking awful, Daniel said it wasn’t too bad. After the first couple of days, he didn’t really itch or feel the rash on his body. In fact, he said that he wouldn’t know it was there if he couldn’t see it. Much like the vines themselves, he never knew that he was spreading the dangerous oil on his body as he tore out limbs and stuffed them in trash bags.
The unseen enemy. I couldn’t help but think about multiple myeloma. In so many ways, Daniel’s smoldering myeloma is like this poison ivy rash, something living on his mind and in his bones, but undetectable out there to everyone else. Like the dark red marks lining his arms, smoldering myeloma is something that he can’t feel the actual presence of – only its residual impact.
Wouldn’t it be easier, I thought, if myeloma's progression was forecasted with some rash that would warn us before his bones developed lesions or his kidneys felt myeloma’s sting?
For those who are not yet in treatment and not showing traditional "CRAB" symptoms, so much of treating this disease is about timing. Knowing who to treat and when, based upon your likelihood of progressing to active myeloma. Not rushing to treat too soon, lest you bring on unwanted side effects and become resistant or refractory to available treatments. Not waiting too long to treat, lest you suffer from unnecessary organ damage.
Many patients present with symptomatic myeloma at the time of their diagnosis. They have little myeloma history or other personal data points, so their treatment decisions are based on treatment guidelines and clinical trial data.
Thankfully, we have four years of personal data for Dan to turn to when making decisions with his specialist. Knowing there are outliers everywhere, we do our best to proceed cautiously, ask good questions, and work with the specialist to stay on top of things.
But, for me, the nagging question remains. How about the timing? Are we waiting too long? Have we waited long enough? How soon is “now” and how will we know that the time and treatment protocol is right for Daniel?
It’s been four years and I’m still struggling with that one.
At the end of the day, it comes down to trust. You must trust the specialist – who is unquestionably more knowledgeable about myeloma than you are – and trust that he or she is recommending the right course of treatment (or no treatment, as the case may be) for you or your loved one.
This is hard for me. It’s not that I don’t think his specialist is top-notch. Believe me, I think she is great. It’s not that we’ve had bad experiences with his research facility. We haven’t.
As the wife, I just feel like I should be doing something. Like a rash that must run its course, I look at Dan and know that his smoldering multiple myeloma is taking us on a journey over which I have no control. Daniel is not a patient to me. He is my husband – my better half and my whole world, and for four years I have just “trusted.”
It’s funny, since his run-in with poison ivy, Dan says that he sees the stuff everywhere. This is particularly ironic, since he thought he knew what it looked like before he had the allergic reaction to it. Before he began the yard work, in fact, I asked him about the vines several times, and he said repeatedly that poison oak and poison ivy weren’t anywhere in our backyard. Now, he’s not so sure. He doesn’t trust his own judgment now.
Sometimes, I feel the same way about his smoldering myeloma. I can’t see it, but I know it’s there. I feel its presence with us. And like a rash that makes you think twice, sometimes I secretly doubt what I am told. I struggle with trust. I can’t help but wonder if we are making the right decisions because everything is at stake, I tell myself. And I don’t want to trust that which I don’t completely understand.
I strive to be “where I am” and not “where I’m not,” but I still get sidetracked and occasionally stymied by this multiple myeloma that lives with us.
Dan’s smoldering myeloma has changed both of us in ways that are innumerable. And as Dan is fond of saying, “We haven’t even reached the hard part yet.” (Yep, that one never makes me feel any better.)
There’s an old saying that houseguests are like fish – neither should be kept around after three days. Well, smoldering myeloma is like being told that you are now living with a fish, and no matter how bad it stinks or changes the way you live your life, you need it to stick around, because the alternative is a lot less pleasant.
So, I strive to live with four-year-old fish, poison ivy, and anything else that comes our way. I try to trust where trust is hard, and know that “what will be will be,” regardless of my comfort with it. Four years on, and I strive to be here – “where I am”, and not “where I’m not.”
The poison ivy may scar. In fact, it’s been more than a month, and the marks are still there. But I can tell you that it’s nothing compared to the scar that multiple myeloma has left upon us all.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Tabitha - Nice article and great analogy. We have never experienced the pain of poison ivy, but thanks for the warning. I never knew that it might leave scarring or that the scarring would take so long to go away. Now we know!
My husband and I received annual physical examinations at work during our careers and despite this vigilance, my husband's multiple myeloma went undetected. It took a cracked rib and nine months of feeling bad for him to finally receive the diagnosis, but not by our primary care provider or by the local medical center. We are forever grateful to a handful of neighbors (all long retired) who poked and prodded my husband to make an appointment at a leading cancer center. One important lesson we learned from our experience is that with uncommon cancers like multiple myeloma, you have to go to one of the major medical centers for diagnosis and most probably treatment. My husband's next checkup is in a couple of weeks and will be 14 months post stem cell transplant. We are hoping and praying for good news. Like the hidden poison ivy, we do not know what could be hiding just below the surface.
Hi, Tabitha,
I've been reading your and the other writers' columns for several months, having found the Beacon a few months following my diagnosis of IgG kappa MGUS on May 22, 2015. I have learned so much from all of you regarding continuing to live, and to love and be loved, though plagued with uncertainty, continuous testing, specific drugs and their specific side effects, stem cell transplants, etc.
I think I consider myself "lucky" in that I have this time to get used to the idea that I may be found to be very ill during any 3 month test. November is my next set of tests. I'm on a February / May / August / November schedule with my really wonderful hematologist.
I also feel I'm lucky because I've found found two support groups – one that meets monthly at a Gilda's club here in my area, and the other, which is very important and inspiring to me, being you and the other Beacon columnists, as well as those who comment on your columns.
Thank you all,
Mary Helen
Thank you for another well written article, Tabitha. You have a great gift for putting into words those emotions we all feel and the thoughts that run through all our minds.
I wonder if Daniel is typical of a smoldering myeloma patient. Four years is appears a long time but I don't know if that is typical or not. This disease is so heterogeneous that I doubt there is a typical time between smoldering and active myeloma. What I do wonder is whether it is inevitable that smoldering myeloma always leads to active myeloma. That is not the case with MGUS as many people do not progress with that. Not sure about smoldering. I assume you asked Daniel's specialist about that. I hope he never has to have treatment.
Tabitha,
English ivy can be just as bad as poison ivy if you develop a sensitivity to it by many exposures. My wife developed this same "poison ivy" like response in our garden. We have no poison ivy in the yard. If you look up English ivy on a reputable horticultural web site, you will find that this awful reaction can come from friendly English ivy. My wife now has to wear rubber gloves working in the yard, disposable ones, to prevent further reactions. This has worked well.
Thank you all for your comments!
Patty B, I couldn't agree with you more! It is crucial to go to a major cancer centers for diagnosis and treatment, if at all possible. I hope that your husband gets good news at his next check up. I know the waiting is hard, so I'll be keeping y'all in my thoughts and prayers!
Mary, I'm so glad that the Myeloma Beacon has been a good resource for you. It's my go-to resource as well! It's comforting to know that we all have support out there - and it's coming from those who truly know what it is like to "live well" with myeloma. The columns I read on the Beacon have made such an impact on me! I hope they continue to do the same for you too!
Sandra and Ron, Thank you for your kind words and your well wishes. I'm with you - I hope and pray every day that he can avoid treatment until a "long-term working cure" is found! I'm not a physician, so I don't know whether smoldering always leads to symptomatic myeloma, but we've seen a slow and steady progression with Dan's smoldering myeloma since 2012. For Dan's specialist, it's more of a question of when to treat ... so every three months we just keep crossing our fingers that it's not "the next visit". If we 're lucky, we'll keep on like this for awhile longer!
Eric, Thank you for the heads up about the English ivy! I will definitely share this with Dan. Our neighbors have this ivy that grows like wildfire and while we remove it from our side of the fence, I expect that we haven't seen the end of it. I don't want him to get this again, for sure!
Best wishes for good health everyone - thank you again for your comments!
Hello Tabitha, I echo the above commenters in wishing Daniel good fortune for his health. Here, my garden pest is burrs; they stick all over your socks and clothes. If I notice the small blue flowers that look like forget me nots blooming in the spring, I pull the plants up, but in the seed form they are really a nuisance.
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