IMF ASH Reception, 2015
- Diagnosed 2010
- Revlimid® + Velcade®+ dexamethasone (induction)
- Revlimid® (maintenance)
- Velcade® SQ (maintenance)
I moved a heavy box at work. I was used to getting things out of my way. I used to clear trees to make trails on our land. So I didn’t think anything of it.
Except that this time, I developed a back ache. It was beyond an ache. It was excruciating at times. Even physical therapy wasn’t helping. I actually had to cancel a business trip because I was in too much pain. But my sister’s husband had just been diagnosed with metastasized lung cancer. I had an elderly aunt and uncle who needed to be moved. I had things I had to do. And I was working full time and volunteering at Ronald Mc Donald House, something I’d been doing since I was a young professional.
In short. I was busy. And yeah, I was a little tired. I also was anemic. They turned me down when I went to donate blood. But who wouldn’t be tired, with all that going on?
So when I went for my yearly check up, I asked my doctor to do some blood work. Then I got the call—you know, the one you never want to get: when the doctor asks if you’re where you can talk. Something was definitely up with my blood work. He told me to go see a hematologist.
But my brother-in-law had just died. We were headed to the funeral. He’d also had back pain as a symptom and that really scared me! I just couldn’t tell my husband that I had to go to specialist for what I’d thought was a little anemia.
But I did. We went together. They suggested lupus. Possibly lymphoma. But the one they least suspected was . . . myeloma.
I did finally get my diagnosis, seven months after my back pain started. I was 46. I had also lost 5 inches. But I wasn’t going to lose my life.
In August of 2010, I had my stem cell transplant. Afterwards, I was on Revlimid for awhile.
Then I had three years with no treatment.
Three years to get back to work, get back to life, back to my garden and husband and to build my strength.
My husband and I own 35 acres of undeveloped land. We call it Cool Belly Creek, because our dogs love to lay in the cool water on hot days.There’s no house yet, because we haven’t decided what we want it to look like. And there’s only a small garden compared to the one we have at home. But there are miles of trails that we love to hike. We put them in, clearing the land ourselves with chainsaws, crawling on our hands and knees to hack down the mountain laurel bushes, and wood chipping it all into a floor for our green house back home and a perimeter road wide enough for our ATV. We’ve built trails down to the creeks, and maintain them to keep them clear of low-growing branches and downed limbs. We even had to put the road in all the way to the property.
So I’d always been in good shape before the cancer. I was certainly taller. But now I’m motivated by myeloma to be as strong as I can be. To keep pushing forward so my body can be ready for whatever comes my way. Luckily, there are new treatments on the horizon these days. You don’t just have to take whatever you doctor gives you, and hope that it’s a fit. These days, there are choices.
But I didn’t know any of that when I was diagnosed. When my husband and I went to our very first Chattanooga Multiple Myeloma Networking Group meeting, people asked us questions, and we didn’t even know what they were talking about! But by the time the leader stepped down a year later and asked us to take over the group, we were ready. That’s because the IMF makes it easy to keep up with the advances. And now we’re the ones telling the new-comers what they didn’t know they needed to know. Now we’re the ones helping them, so they can make informed decisions side-by-side with their doctors.
I first came to ASH as a blogger for the IMF two years ago, I chose maintenance therapy as topic because I was curious about it. I wanted to be able to talk to my group about it. I never suspected that what was barely out there when I got diagnosed, is now part of my path too.
You see, in 2014, I relapsed. I felt fine, but my tests showed otherwise. I went back to my induction therapy of Rev+Velcade+Dex. And it worked again! I had a good response. Then I transitioned to Velcade sub-que as maintenance. I have the 414 translocation, so it’s a good fit. I feel great. Just a shot every couple of weeks, and my myeloma is stable. And last month, we reduced my dose —a new regimen we’ll follow for a year.
At ASH, I also cover monoclonal antibodies, so IMF members can keep up with all the latest treatments. And there are so many, which is remarkable since we’re not one of the “famous” cancers. Myeloma affects only a relative handful of people, but it has so many people working on it, so many new treatments. For me, Velcade has been a very effective drug. It’s worked for me each time I’ve used it. It’s easy to tolerate. And I’m super pleased with how easy maintenance on sub-que is.
In fact, sometimes, I have a conflict: My work as a support group leader has me out in the community talking about myeloma, and sometimes, about my myeloma. But professionally, I don’t want it to be the first thing people know about me. I was on TV during Myeloma Awareness Month. And after the program, co-workers came up to me and said, “I didn’t even know you had cancer!” Which is a good thing! I wore a wig for months, but they still didn’t know. I don’t look sick. I don’t act sick. Nothing in my professional life screams “cancer,” even while, in my myeloma life, I’m an advocate. That’s because my treatment is easy enough that they can’t tell. So I get to choose who knows what and when.
But early diagnosis is also key. So I’m very focused on getting the word out to general practice physicians so they can recognize the signs of myeloma. Mine was caught by a gynecologist. A gynecologist! For the next Myeloma Awareness Month, I’m thinking about writing a letter with him: A “Two Sides of the Stethoscope” view of myeloma, to educate non-hematologists on the symptoms, so that patients can get diagnosed and treated earlier. So that no one else needs to lose 5 inches.
The outdoors has always been a source of nourishment to me. It’s where I grow vegetables, and now coax citrus trees to flourish in our green house, and even fish to live in our aquaponic ponds. But it’s also a place that feeds me. Where I feel the healing power of the earth and air sustaining me, just like the plants that grow there. Even when I, sometimes, cut those plants down. Just—don’t put a mountain laurel bush in my path!
I turned 50 a couple of years back. Unlike most women, I was thrilled. To make it to that milestone, when I’d been diagnosed with cancer? And now, I have the hope of building that house on Cool Belly Creek and living there for many years. It’s such a hopeful time for patients right now. Myeloma’s not a curable disease—not yet—but it is a treatable disease.
I don’t really have a bucket list. I’m too busy enjoying the everyday things in my life. Working, gardening, bushwhacking, spending time with my husband, friends and pets. Things I can do because of all the research that’s been done in myeloma, that’s being done today.
Research that keeps me out blogging about new treatments and blazing new trails.