In many ways, Lory Macrate’s experience with multiple myeloma is typical of cancer. It came out of the blue and has been hard to eradicate. Yet, she hasn’t let it dim her spirits or keep her from the things she loves. She and her husband Ed shared what it’s been like for them.
Many cancer diagnoses come as a surprise, but perhaps yours was more surprising than most?
Lory: I think of myself as an extremely healthy person. My whole family is healthy and long-lived, so it never occurred to me I'd end up with something like this. I went for my annual physical. They found something in the blood work that they were concerned about. They did more tests and my total protein was high, so they ran another test and found that I had the paraprotein. Then they said, "We want you to go to a hematologist."
They just gave me the doctor's name, and when I called, they answered, and it almost makes me cry when I think about it... I can't even remember the name, but it was Cancer Care. The pain just went through my body, the fear.
That’s an awful way to learn about it. What happened next?
Lory: I was what they call smoldering, which means I had no symptoms. It was just showing up in the blood work, but it wasn't enough to treat. In 2011 they didn't think that it made sense to start treatment because the treatment compromises your immune system. They would wait until it was essentially full-blown myeloma. So, I had another year and a half to chew on it. I read up on it, and it was pretty scary. At the time, it was a three- to five-year survival.
Ed: Yeah. After that first appointment, the terror, and the tears, and the fears that go along with a cancer diagnosis, it's really intense. Nine years later, somehow, we’ve adjusted. But in the beginning, it was awful, that's for sure.
What happened when you finally did start treatment?
Lory: We walked in, and it was just like, "I don't belong here. This isn't for me." I don't know how to explain it, but it was painful. I remember turning to you, Ed, and just standing by a wall or something and saying, "I don't know if I can go in there." It was just an awful feeling, because it all hit home so hard.
Ed: At that point, it was so clinical and cold. It's kind of like walking into prison or something.
Lory: Exactly. I got to the point where I was thinking it wasn't going to happen. This is something I try to explain to people. I never had symptoms so through this whole process I’ve been taking medication and treatments for something I've never felt. The side effects are what I deal with. It's hard to comprehend that I have this thing in my blood that's trying to kill me.
Anyway, ultimately, we knew what the treatment would be and where it would go. Four rounds of induction and a transplant, which terrified me. [Induction therapy is a combination of drugs that kills cancer cells. The transplant uses high dose chemotherapy to kill blood-producing cells in bone marrow then returns the patient’s own previously collected stem cells to repopulate the bone marrow so it can produce new blood cells.]
Lory: I was in the hospital for 24 days, and Ed stayed in the room.
Ed: It was weird. When the chemo first hit your system, it was like nothing would happen for a few days, and then you'd go down like an anchor. Then you started losing your hair. Then, you started feeling terrible. Then, somehow, some way, three weeks later, you started to rebound. It was just an incredibly odd and terrifying experience.
Lory: Yeah. It's scary. They harvest your cells to reinfuse later. They give you a high dose of chemo to essentially destroy all the dividing cells in your body. Then, they reinfuse the cells that they saved. When they finished the harvest, they had this big bag of red blood cells and I kept thinking, "Don’t let anything happen to those." That was my big fear.
What a way to start. How has your health been since the transplant?
Lory: Well, myeloma is a relapsing disease. You always relapse. It's not a matter of if, just when. For some people it's years. For some it's months. Some people never go into remission, or they only have a partial remission. I was lucky. After my transplant I had a complete remission, although the myeloma is still there, just not detectable, but it didn't last very long. It lasted about 22 months, which sounds like a long time, but I know people for whom it lasted five years or more. And each remission is shorter. They say you're never going to have a longer remission than the first one.
That was probably the next most devastating thing. Even though you know it's going to happen, you think, "It's not going to happen to me." It's just human nature. So, that first relapse, it was just like being diagnosed all over again. It just stuck a dagger in my heart. I literally screamed crying, it was just so devastating. You just never get used to it. I'm on my third relapse right now. I relapsed about two and a half years ago, but it's a very, very slow progression.
What’s the daily routine like with multiple myeloma?
Ed: Lory has treatments every couple of weeks. It was an infusion until a few months ago, and now it's actually a five-minute injection, a sub-q injection, which is great, because it doesn't take as long. But every day, a couple times a day, she takes a fistful of pills, so there's that constant regimen, the reminder of the cancer. Thanks to the guidance from her doctor, Lory's got that down to a science. She knows all the interactions and the spacing for optimum efficacy. "I want to take this one at 5:00 PM, but I can't take the next one until 8:00," and there are alarms on the iPhone going off to cue all these things. Those are the things that really cause the side effects that throw your GI system into overdrive or not.
Lory: A lot of the pills are just to take care of the side effects. You take the cancer drugs and then you've got to take drugs to take care of the side effects from those drugs, and then you've got to take care of the side effects of those drugs, and it goes on and on. Otherwise, I'm very healthy.