Myeloma Mom: Just Keep Swimming
The other day, I realized I share a common bond with my daughter’s pet fish: We’re both survivors.
Maybe I’m getting too attached to this fish. Maybe I’m overthinking things. Just hear me out.
Statistically, betta fish who come to live in our home have an extremely low survival rate.
When a fish learns he is going to live in the Crowley house, it is grim news indeed. It is essentially a death sentence. The fish is stunned. He begins to get his affairs in order. He has a brave battle ahead of him. The other fish at the pet store shake their heads. “He should try to have a positive attitude,” they say. “Maybe that will get him through this.”
But bettas never have a positive attitude. They are cranky, cranky fish.
Our first fish was Jimmy John, who lived about two months. He spent most of that time floating around glumly, often acting like he was dead. I finally found him facedown in the gravel at the bottom of his tank.
Next, we adopted Sam. A month or two later, I noticed he was swimming funny. Not "Ha Ha" funny — more like, "Oh, no" funny. It was pretty obvious that a host of fish angels was about to beckon Sam toward The Light.
It was frustrating, because it’s not like we ignored the fish or mistreated them somehow. We did our best to care for them. They just couldn’t make it.
After Sam’s untimely passing, I said we’d stay away from fish for a while. The odds were not in any future fish’s favor. My daughter, however, wanted to try again. Last spring, she said the only thing she wanted for her ninth birthday was another betta fish.
I let out a great big sigh and headed back to the pet store. I knew all of the fish were scared out of their minds when I passed by. Statistically, they were doomed.
Six months later, our fish, Olaf, is still alive. Six months! I’m shocked. I’m happy for the little guy. He’s not following the trend. He’s not only surviving; he’s thriving. His fins have grown long and billowy. He looks cranky, but that’s to be expected.
Why is he still here? Are we doing a better job of caring for him? Or is there simply something different about him that keeps him going?
Maybe I just needed to recognize that each fish is an individual and won’t necessarily follow the trends.
When I was diagnosed with smoldering multiple myeloma in 2005 (I progressed to symptomatic myeloma in 2007), I studied all of the statistics, which said that I’d live about three years. Way back then, it was hard for me to find too many survivors who had lived a whole lot longer than that, so it looked like this was going to prove true.
This month marks the nine-year anniversary of my diagnosis. I’ve since found many other survivors who have been around this long or even longer. Years ago, I figured I would be, well, facedown in the gravel by now. Why am I still here? Is it because I have good doctors, good medicine, and a fairly non-aggressive form of myeloma that so far responds well to drugs? Or is it because there is something different about me? Or all of those things?
Or is it because, while doing my research, I forgot I was an individual and not a number?
If you’re newly diagnosed, do your research, but don’t spend too much time looking at the numbers or reading scary stories that have happened to someone else. Every patient is different.
And every fish is different, apparently.
Why do Olaf and I thrive? It remains a mystery.
For now, Olaf and I will follow the advice of Dory, the big blue fish in Finding Nemo: We’ll just keep swimming. Just keep swimming.
Karen Crowley 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 .
Wow, what timing. I am just setting up an aquarium and plan to get a betta fish. I hope I have better luck than you have had.
A couple of tips and facts concerning bettas, or Siamese fighting fish. In the wild they generally live in stagnant water (like rice paddies), which is why you often find them on display in small bud vases. The bud vases enhance their fins (like a magnifying glass), and they're set next to each other so they see can see each other, causing them to spread out their fins and gills in a fighting posture, further enhancing the way they look.
They don't need much to thrive. They have an air sac which is basically a lung. This is why they stay at the top of a tank and can live in stagnant water. If it's the only fish you have, do not over feed it because that will only make the water rancid, which will make it sick. Never put two males in a tank together — you will end up with only one with very tattered fins. You can get a male and female and, if you're lucky, they'll mate and you'll see a bubble nest floating at the top holding the eggs (the male guards the nest, btw). This is very cool but difficult to achieve in a community tank.
Oh yeah, great article. I like fish (obviously), and I like to survive.
We can't ever forget every fish is different when it comes to myeloma treatment. Not just with myeloma having a wide variation in response to treatment, but whether the “fish” or patient can or has the ability to take the time away from their daily responsibilities and commit the resource to something like going through intensive, UAMS Total Therapy-like treatments, or if they simply have to do a less intensive approach such as Dr. Berenson because of responsibilities with family, being the sole income provider, etc.
Congratualations on your nine year anniversary since you diagnosis, Karen! I think you are just going along 'swimmingly'!
When my kids were young, we had all kinds of pets. We had fish, although I am not that great at keeping aquariums. Once, one daughter and her friend, who were both about five years old, decided to clean the fish tank. They scooped out all the fish and put them on the floor while they emptied the tank of water! Poor fish, flopping about, it was a real disaster. We got them up and back into the aquarium, where they swam around again. I think we might have tried 'bettas', although I remember them as 'cyclads'.
Thank you for the advice to not look at the numbers. Yes, I'm just another fish and I'll keep on swimming. I'm so new to this we haven't even done the tests to determine the details of my condition. But you are right, if you focus on the numbers it'll drag you to the bottom of the tank.
We are individuals. We shall live long and prosper, to quote another line from a movie.
Thanks for your great column.
Jim
That's right, as the Tao of Dory reminds: "Just keep swimming"!
You betta bet it!
Two and a half years ago (when I was first diagnosed), my teenage granddaughter painted a very cute picture of Dora with the words "keep on swimming", which I have hanging above my desk. I showed her your amazing column.
Let's all keep on swimming,
Coach Hoke
Congratulations on another milestone! I think I need to follow your advice: stop researching the internet, and just get a betta fish! I bet my cats would agree anyways.
Wishing you much health, happiness and turkey for Thanksgiving!
Tabitha
Thanks for another great column!
Thank you for this vey uplifting commentary on myeloma survival and individual response. I really needed to read this article this morning. My husband was diagnosed with multiple myeloma earlier this year and we are in "Multiple Myeloma 101," trying to understand where our future is going. Knowing that each person with multiple myeloma is unique and has a unique response to therapy will help me each and every day. In a way, your message will probably be my mantra for the future and I will try not to let the statistics and setbacks get me down.
Aloha Karen,
Congratulations on another year of swimming. Great article - especially for the newly diagnosed among us.
It is SOOOOO important to realize that just because you have MM your future is not decided. You may live a week, you may live a year, you may live 20 years. Not only is every myeloma patient different, but every cancer is different. Do not assume that because your friend, aunty, grandpa, etc. had a certain outcome with their cancer that yours will be the same.
I love statistics, probabilities, and data. Unfortunately, or in our cases fortunately, it has no bearing on how we are going to feel today or how long we will continue to "swim".
Keep on going Karen; there is a huge ocean still to see!
Aloha & Happy Thanksgiving!
Tom
Hi Karen,
Great column! My 85-year old mom has a couple of bettas as companions. I'm looking forward to showing her your column the next time I visit her.
Best wishes to you and Olaf as you both keep on swimming!
Mike
Thanks for the article. I am on an emotional roller coaster.
I was diagnosed on November 24 with MM. I have two young children. I am at a total lose of what and how to handle this. I would like advice on where to go for a second opinion. Do I head across the country to Dana Farber or Mayo in Scottsdale? Please give me your suggestions and experiences.
Hi Julie,
Don't panic, which is easy to say, as I know how you feel.
A second opinion is a must and further investigations necessary. If you find a competent team that YOU feel comfortable with, then the future is not totally bleak.
You need to change your lifestyle, slow down, concentrate on your children and draw strength from them.
Medically, there are many solutions that give us time. Stem cell transplant is one of them and there are drugs that keep the disease at bay, although at a price (fatigue, side effects etc). You need to supplement on a regular basis (curcumin, vitamin D, vitamin C, minerals etc). If you are prescribed bisphosphonates, make sure you visit the dentist and clean your mouth of any possible problem.
I was diagnosed back in 2010, and am still alive and kicking.
Good luck
R