Transcripts
Diagnosis
Sheri Baker: The first time I noticed maybe something was off, was August of 2011. I was flying with my son to take him to college in Maryland, and I live in Idaho. We were at the airport, and walking to the gate, which was all the way at the end, of course, the very last gate. I was 49, but I remember feeling winded, and I remember walking with my husband in the evenings and feeling a little winded.
Usually, I have longer legs than him. I walk faster and I thought, "I'm out of shape. I'm going to be 50 next year, I need to start working out again." I hadn't worked out for probably six months and I thought, "Man, I really got to get myself back in shape. This is not good." Then really didn't think much more of it than that. In October, well, for probably months and months, I had really bad cramps in my legs and my feet, especially at night when I was sleeping.
My husband said, "You really need to go get that checked out. Maybe you have something out of balance, electrolytes, something is off." I went to just my primary care doctor, told him what was going on. He said, "Well, I think you probably just have restless leg syndrome," but he goes, "You look like a really healthy, fit, 49-year-old woman. He goes, "We'll draw some blood work and see if we see anything."
That was on a Wednesday. On Friday, October 7th, 2011, he called me that morning, and he said, "Your blood work came back and your kidneys are failing." I was just like, "What do you mean my kidneys are failing? How can that be?" He said, "Your kidneys are actually only functioning at 8% of normal." He says, "I want you to go to the emergency room right away and they'll draw more blood work, and we'll confirm this or see if it was a mistake or whatever."
Of course, I called my husband in a panic. He was at work. He came home, got me. We went to the ER, and the whole time I'm thinking, "This is a mistake. They've got my blood work mixed up with somebody else." We did the blood work in the ER, sure enough, it came back that my kidneys were only functioning at 8%. They admitted me right away, because, at that point, I guess they didn't know how I was still functioning with my kidneys being that low.
Other than being winded, I really didn't feel sick. I didn't have any other symptoms. Later, we come to find out I have all these symptoms, just didn't know it.
They admitted me to the hospital trying to figure out why. I don't think they had run a full panel of blood work yet. Just the stuff that shows the kidneys are failing.
Anyways, I was admitted to the hospital Friday morning, and had a kidney-- Well, I saw a nephrologist right away. He came in, was fully prepared to put a jugular catheter in, and start dialysis immediately because my kidneys were so bad, but he walked in the room, it was probably six o'clock that evening, and he said, "You looked so good and were coping so well, I decided not to go with the jugular catheter, and didn't really do anything at that moment."
Anyways, we did an ultrasound which didn't show anything. Did a kidney biopsy on Monday morning. I got discharged, I think Monday afternoon. The biopsy was Sunday, but anyways, I got discharged on Monday and still didn't know what was going on, was waiting for the results of the biopsy. The nephrologist called me Tuesday, maybe around 5:30, 6:00 that evening, and said, "Can you meet me at my office tonight about 7:30?"
Well, right away, my husband and I are like, "That's not good. If he wants to meet us at 7:30 at night after hours, this isn't good." Didn't know what to expect. We get there and our oldest son was with us. He was home from college and he was with us, and the nephrologist said, "You have light chain deposition disease." He goes, "It's not cancer, but it's treated like cancer." He says, "Do you have an oncologist, or do you know an oncologist?" We're like, "Well, of course not."
I was a perfectly healthy person at that point, or thought so. He says, "Well, I have a friend who's an oncologist and I'll refer you to him." That was Tuesday night. By Friday, I had an appointment to see the oncologist here at our local cancer Institute. Went in to see him, and I don't even remember if he mentioned the words multiple myeloma at the time, but he did do a bone marrow biopsy right then and there that day, which again, I'm not expecting any of this. I really don't know other than what we've read about light chain deposition disease. We did the bone marrow biopsy and maybe a week to seven days later, I get a phone call from his nurse confirming that it is multiple myeloma.
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Treatment 1: Stem Cell Transplant and Experiencing C-diff
Sheri: Of course also, in the meantime, my kidneys are failing. That weekend, I was in the hospital, then nephrologist says, “You will have to start dialysis and you will be on dialysis the rest of your life, because your kidneys are clogged from all the light chains, and we haven't figured out a way to unclog them." In addition to getting prepared to find out I have blood cancer, finding out that I'm going to have to start dialysis and preparing for that.
My nephrologist said, “You're young, you're active. You're a really good candidate for peritoneal dialysis, which you do from home.” I had surgery to have the peritoneal dialysis catheter inserted in my belly, got trained on how to do dialysis from home. I think it was October 31st that I started chemo and dialysis. No, it was actually the day after my catheter surgery that I started my first chemo. At that time, I did Velcade and dexamethasone, and our hospital was just starting to do Velcade as Sub-Q injections versus IV infusions February 27th, I think it was, and started--
Well, I had already had my stem cells harvested, but then I got the melphalan because of the dialysis and the kidney failure, I was on two days of melphalan split into smaller doses, because of my kidneys. Everything I had, had to be dose-adjusted because of the kidney failure. Anyways, I did the melphalan, and on March 1st, which also happens to be my brother's birthday was my new re-birthday, and I got my stem cells back on the first. I did my whole transplant in-patient because that's just what they were doing for everybody at the time at my hospital in 2011, but especially because of the dialysis.
While I was in the hospital, I had to do hemodialysis versus the peritoneal dialysis. Basically, Monday, Wednesday, Friday, for the three weeks I was in the hospital, I had to do hemodialysis, which was the worst thing I've ever done [chuckles].
Interviewer: How is it on the ground?
Sheri: Well, dialysis is not a walk-in-the-park, period, but hemodialysis, they're pulling this blood out of your body, filtering it, warming it back up to put in your body, but it's really not the same temperature. You get cold, it's about a three to four-hour process. You can't get up from the bed while you're doing-- because in my case, I'm in a hospital room in a bed, you can't get up to go to the bathroom, nothing while you're doing the dialysis, because the amount of blood that's out of your body, your blood pressure is low.
They don't want you to pass out, a whole lot of issues, but of course, I've just had high-dose chemo. On top of that, they found within the first week I [00:04:30] believe of being in the hospital that I had C. diff. Now, I also have diarrhea and you got to go to the bathroom [chuckles] and maybe this is too much information but it just adds to, how miserable you feel while you're doing dialysis.
Interviewer: Can you give me a quick what C. diff is for someone who's not familiar with it?
Sheri: Oh, gosh, what is the actual termino-
Interviewer: In a layman's term, your experience of it.
Sheri: Well, it's basically like a bag that you carry, and you could have it and never know it and never have any problems, don't know where I got it from, but I think it just came to the forefront, probably from the chemo, the melphalan, because it's killing off everything else in your body. Then, eventually it goes away, but it can be highly contagious, so everyone who came in my room had to gown up, mask up, wear gloves. Whereas, the first three or four days of my transplant, I didn't have that issue.
Also, I couldn't leave my room, because of it, because it's so contagious. Food, everything they brought in, the people who brought my tray, everything had to be disposable, instead of the normal plates and forks and glasses. Everything had to be disposable because they threw it away in my room and then, bagged it up and took it out. They're just really, really cautious about that in the hospital. I was hoping to not have side effects from the chemo like people do get diarrhea, people do get nausea, and I was hoping not to get those and end up with C. diff.
Anyways, that just made the hemodialysis even harder. [00:06:40] You get very cold. I had all those warm blankets constantly on me during that time. Anyways, that was enough to deal with.
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Treatment 2: Peritoneal Dialysis at Home
Sheri: Of course also, in the meantime, my kidneys are failing. That weekend, I was in the hospital, then nephrologist says, “You will have to start dialysis and you will be on dialysis the rest of your life, because your kidneys are clogged from all the light chains, and we haven't figured out a way to unclog them." In addition to getting prepared to find out I have blood cancer, finding out that I'm going to have to start dialysis and preparing for that.
My nephrologist said, “You're young, you're active. You're a really good candidate for peritoneal dialysis, which you do from home.” I had surgery to have the peritoneal dialysis catheter inserted in my belly, got trained on how to do dialysis from home. I think it was October 31st that I started chemo and dialysis. No, it was actually the day after my catheter surgery that I started my first chemo. At that time, I did Velcade and dexamethasone, and our hospital was just starting to do Velcade as Sub-Q injections versus IV infusions February 27th, I think it was, and started--
Well, I had already had my stem cells harvested, but then I got the melphalan because of the dialysis and the kidney failure, I was on two days of melphalan split into smaller doses, because of my kidneys. Everything I had, had to be dose-adjusted because of the kidney failure. Anyways, I did the melphalan, and on March 1st, which also happens to be my brother's birthday was my new re-birthday, and I got my stem cells back on the first. I did my whole transplant in-patient because that's just what they were doing for everybody at the time at my hospital in 2011, but especially because of the dialysis.
While I was in the hospital, I had to do hemodialysis versus the peritoneal dialysis. Basically, Monday, Wednesday, Friday, for the three weeks I was in the hospital, I had to do hemodialysis, which was the worst thing I've ever done [chuckles].
Interviewer: How is it on the ground?
Sheri: Well, dialysis is not a walk-in-the-park, period, but hemodialysis, they're pulling this blood out of your body, filtering it, warming it back up to put in your body, but it's really not the same temperature. You get cold, it's about a three to four-hour process. You can't get up from the bed while you're doing-- because in my case, I'm in a hospital room in a bed, you can't get up to go to the bathroom, nothing while you're doing the dialysis, because the amount of blood that's out of your body, your blood pressure is low.
They don't want you to pass out, a whole lot of issues, but of course, I've just had high-dose chemo. On top of that, they found within the first week I [00:04:30] believe of being in the hospital that I had C. diff. Now, I also have diarrhea and you got to go to the bathroom [chuckles] and maybe this is too much information but it just adds to, how miserable you feel while you're doing dialysis.
Interviewer: Can you give me a quick what C. diff is for someone who's not familiar with it?
Sheri: Oh, gosh, what is the actual termino-
Interviewer: In a layman's term, your experience of it.
Sheri: Well, it's basically like a bag that you carry, and you could have it and never know it and never have any problems, don't know where I got it from, but I think it just came to the forefront, probably from the chemo, the melphalan, because it's killing off everything else in your body. Then, eventually it goes away, but it can be highly contagious, so everyone who came in my room had to gown up, mask up, wear gloves. Whereas, the first three or four days of my transplant, I didn't have that issue.
Also, I couldn't leave my room, because of it, because it's so contagious. Food, everything they brought in, the people who brought my tray, everything had to be disposable, instead of the normal plates and forks and glasses. Everything had to be disposable because they threw it away in my room and then, bagged it up and took it out. They're just really, really cautious about that in the hospital. I was hoping to not have side effects from the chemo like people do get diarrhea, people do get nausea, and I was hoping not to get those and end up with C. diff.
Anyways, that just made the hemodialysis even harder. [00:06:40] You get very cold. I had all those warm blankets constantly on me during that time. Anyways, that was enough to deal with.
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Treatment 3: Experiencing Hemodialysis at the Hospital
Sheri: I had to do the hemodialysis in the hospital, and I was there for 19 days in the hospital. For the most part, not really a bad experience. I think I slept away the worst of it because you're very tired. I was on a slight IV drip of pain meds and anti-nausea meds just to prevent-- I never had any real nausea, but just to prevent it and keep it at bay. So I slept a lot of the worst of the days of the transplant.
Then, once those cells start to regenerate and your immune system starts to rebuild, you start to feel a little better, and I was really anxious to get out of the hospital and go home and sleep in my own bed. Obviously, everybody is.
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Treatment 4: Post-Transplant Rebuilding and the New Normal
Sheri: Then you start rebuilding. Everybody talks about that new normal. I don't know, it's a cliched term, but it is. From the time of your diagnosis, there's that new normal. In the beginning, you think, how can this be happening to me? Well, especially when you look it up on the internet and you see that myeloma is a cancer of average age 65, men, and more proportionately, statistically African Americans. I'm like, "How did a white 49-year-old female end up with this? Who knows?" There was a few days of sadness.
I worry because my kids were all in-- One of my daughter had just graduated college. My other two boys were still in college and nobody married, no grandchildren. I thought I'll never see this. I'll never live to see my children get married and have grandchildren because the prognosis was three to five years. I asked my oncologist about that because that's, of course, what the internet says. He says, yes, he goes, "Three to five years is the average, maybe seven," he goes, "If you get to 10 years, that would be a home run."
That's bleak when you're 49 years old. I'm coming up on 10 years this October, and I am fully prepared to give my oncologist a hard time that I hit the home run and still going. Anyways, I've always told him that. I said those numbers are just averages and I am not average. For every person that got five years, there's somebody who got 10 years and somebody who got one year. Those are just averages and I plan on beating the average. I have so far.
Interviewer: Well, a lot had changed in 10 years, it's like?
Sheri: Well it can, at the time, when I was diagnosed, there was Revlimid [00:02:30] and Velcade as far as the new drugs. There was thalidomide and cytoxan and other drugs. Revlimid and Velcade were the two that people were using. I didn't do Revlimid because of my kidney function. At the time, it can be hard on your kidneys. When I got done with my STEM cell transplant, I started talking about maintenance. The only maintenance offered was Revlimid and everything I had read said, Revlimid can be really hard on your kidneys.
After a lot of discussion research, talk with my husband, talk with my oncologist, we decided not to do maintenance. I got a very good partial remission, which I have to say, I was very disappointed over. I had felt like the fact that I was doing as well as I was doing, I was a little bit of an overachiever. I was very disappointed not to get a complete remission. Even still, I decided I would go with no maintenance. I managed to go for 18 months before I saw any numbers start to climb. Then my M-spike eventually started to climb.
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Restarting Therapy: Getting Off Dialysis
Sheri: We'd made a decision especially because of my kidneys that we wouldn't let it climb very high, we would be very proactive. By the time my M-spike was 0.4, we decided that we would start therapy again. In the meantime, I was also able to come off of dialysis. Just by a fluke, my catheter quit working, my dialysis catheter quit working, and we removed it and decided to wait and see how long I could go without dialysis. My kidney function was probably 13% at the time. Over the course of six months maybe, I might have been up to 14%-15%, and I was managing. Now my kidney function is anywhere from 20% to 25%. It usually is in the 20%-21% range right now.
I've been off of dialysis for seven years. About the time, I stopped dialysis in October of 2013, almost two years exactly since I had started it. By December of 2013, we saw my M-spike go up to 0.3. At that point, I was only going quarterly to be checked. Then we started going monthly just to keep an eye on it. When we got to 0.4, we've made the decision to start treatment again. Still, the only real maintenance therapy, the commonly used was Revlimid. We're not a research center here with my Cancer Institute. Other than what I was reading and researching on my own, wasn't looking at clinical trials or anything like that. September of 2014 at Duke University.
One of my sons was living in North Carolina and we thought, "Well, we'll go see a specialist, one of the top specialists there, and we can visit our son." She recommended that I stay on the Velcade three weeks on, one week off just to keep my light chains down and keep my Kappa lambda ratio in the normal range or get it in the normal range because that will help my kidneys. Instead of lessening my Velcade, I stayed on three weeks on, one week off for over six years, and just kept on that regimen. If it ain't broke, don't fix it. [00:03:50] Again, six years with no neuropathy, really no side effects other than maybe chemo brain. Anyways, my numbers eventually start climbing again. I have to look at [ new treatment, doing something different. We knew the Velcade would only go so long, and I was lucky to have gotten the six years out of it.
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Present Status
Sheri: In the meantime, my husband, and I both start really researching and looking at things. We know that seeing a specialist is good. We saw the specialist at Duke a couple of times, decided that-- Well, one, my son was moving back here and didn't want to make the trip across country and so we started seeing a specialist in Arizona, a lot closer for us to fly to. Knowing that my numbers were going to start increasing, we wanted to be proactive. My husband and I are always looking at the next step. "What level do we get to say this is where we're going to make the change, and what are we going to do when that happens?" The recommendation was when my M spike got to 0.5, we would make the change. This was October of 2019 when I saw him, and he said, "I think that we're going to put you on a triplet, which would be Darzalex, Revlimid because I'd never been on Revlimid yet and of course, dexamethasone. The reality set in that I was going to have to change therapy. I really wasn't worried about the Darzalex. Darzalex Faspro [00:02:00] had just been approved by the FDA, which is a sub-Q injection instead of a potentially longer infusion, but the Revlimid scared me because I'd heard so many stories and read so many stories of other patients with GI issues. That probably worried me more than anything, was GI issues up until-- I think it might've been my first one, because I never had any bone issue. So many patients have bone issues with myeloma and so much pain, and mine was all my kidneys.
As a baseline before we started, my specialists in Arizona recommended that I have all these tests done. We did another bone marrow biopsy to get a baseline. We did a PET scan. I only have one or two tiny little lesions. We started the new treatment, and so far, that's going well. I have not had many side effects from the Revlimid. Mostly cramping, no GI issues really to speak of. I started off at 10 milligrams of Revlimid and then because of the really severe cramping, we lowered it to 5 milligrams. I do the same cycle. Most people do 21 days on, 7 days off.
Now, I'm on that and the Darzalex once a month. It's strange for me. I only go to the hospital once a month now, because I'm used to going, between a blood draw and treatment, literally every month for the past six and a half years, almost seven years of going every week, so it's very odd. I only have to go, well, twice a month, once for a blood draw, once to see the doctor and get treated.
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Having a Caregiver
Sheri: Oh, now I might get choked up. I think, honestly, it was more devastating for him and my kids and my mom, I worried about that more than anything because I know what I can handle. Yes, it was really hard on him. It was hard on him to see me like that, to worry about losing me, and then the financial part of taking care of me, because when you first look at dialysis alone, you're like, "This is going to bankrupt us." Then, you find that there are resources and whatnot, and insurance. I mean, we had insurance, but when you first look at it, it is staggering what dialysis costs every month.
I really worried about him. He's an accountant, that's what he does, is numbers. That's always in his head all the time. That was tough in the beginning. We really did worry about that. Then, that worked itself out. He came down to the hospital every single day, twice a day. He would go into work really early in the morning during my transplant and then he would come down, try to get there to see the doctor when he was going on rounds, and then he'd go back to work. Then he'd come down every evening. I kept saying, "You don't need to do this. You're exhausting yourself," but he did.
He's just always been there for me, and he's my biggest cheerleader. He's the one who has said, "You can do this." I knew I could do it, I think I'm a fairly strong person, but he just kept encouraging me, and he has always been there every step of the way for every little thing and always tries to think outside of the box. He's the one who encouraged me to go see a specialist at Duke. He didn't care what it cost to fly across the country. He's like, "You're going to go see one of the top specialists." He has always encouraged me. He encouraged me when I decided to start the support group.
He encouraged me to-- and finds ways, obviously financially, to send me to patient and family seminars with the IMF, to be involved and do the things that I do. He is definitely my biggest cheerleader. I don't know. I know it's been really hard on him. It seems like maybe it gets easier as the years go on than in the beginning because you're so shocked. It's just such a sock in the gut when someone says, "Your kidneys are failing." Then they tell you that you have something else that you'd never heard of with the light chain deposition disease. It's kind of the one-two punch and you'll be on dialysis forever, which didn't happen.
Then to find out it's actually an incurable blood cancer, another sock in the gut. I felt like that hit him harder than it hit me almost every single time, but he is my biggest champion, and I can't say enough about him [laughs]. I don't know, like I said, I can't say enough about how he is always there for me, and I love him.
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Advice for a New Caregiver
Sheri: Well, the biggest thing like everybody says is don't just immediately jump to the internet for information. Because again, my husband was-- we both want to research it and look at it but he was looking up stuff and looking at stem cell transplant. He's like, "This has a really high mortality rate." He was looking at allogeneic stem cell transplants versus autologous. We didn't know the difference at that point. That scared him a lot. From the caregiver point of view, for both caregiver and patient, it's good to get good reliable information first so that you don't scare yourself.
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What Is Resilience?
Sheri: I think resilience is being able to bounce back from a situation. That's probably the first thing I think of with resilience is bouncing back, and being able to still make the best of the worst situation. In my case, I feel like that worst situation was having to be on dialysis, finding out that you have cancer, and in the beginning, looking at the future it's going to be different than what you had planned, but then you bounce back from that.
Because initially, you really do look at it and say, as much as I told myself in my head, I'm going to prove my doctor wrong, that I'm not going to be on dialysis the rest of my life, and I'm going to prove my other doctor wrong that I will live more than 10 years. That was always in the back of my head. [laughs] I never told my nephrologist or my oncologist that in the beginning, but every time I would say to myself, "We'll just see about that." every time they would say something to me, in my head, "We'll just see about that."
I had a couple of days where I cried in the shower because I didn't want anybody else to see or hear that I was upset because I always wanted to put on a good front. To me, that's also, I think, somewhat resilient, is putting on a good front for everybody but then the fact that I felt like I did bounce back from that. I was like, "This is my life, I'm going to be on dialysis, and I'm going to be in cancer treatments, and that's just how things go. You move forward from there." That's what I think of as resilience is bouncing back.
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Finding the IMF
Sheri: I went to a- at the time it was called Pat's Myeloma Beach Party and there was a cancer patient advocate, Pat Killingsworth, and he had a website blog he wrote every single day. Every day, he wrote about myeloma. I started following his page and he wanted to have a gathering of myeloma patients for some education, and funning and comradery. I finally made plans to go there. It was in March, down in Florida. I forget what year it was but it was the year that Pat actually had passed away in January or February of that year but they still held it.
When I went down there and was it with a bunch of other myeloma patients from mostly the East Coast, one of the presentations was on support groups and it was somebody from the IMF who spoke about support groups and about becoming a support group leader. I really think that was my first interaction with the IMF recipients. I was encouraged by the people that were there. There was people with myeloma and other people with other cancers. I met several people with myeloma who were already past the five-year, and much older than- not much but older than me. I thought, "Wow, this gives me hope." Everybody was enjoying themselves, nobody was sitting around having a pity party. I attended that group off and on for a little while thinking, "Wouldn't it be nice to have something like that just for myeloma patients here to give information because we're not at a big cancer research area like Seattle or LA or Houston and all the other places?" As patients, I don't think we're as well educated with the latest and greatest in myeloma, so I thought it would be really good to start something like that.
That's how I really got involved with the IMF, was I contacted them about starting a support group and what that would involve. Then of course it took off from there. I hear other patients' stories about how they contacted them in the beginning as a patient, looking for help, looking for support and information. My first contact really was finding a way to start a support group here.
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Disparities in Healthcare
Sheri: I do think there are disparities in healthcare and certainly in cancer treatment, maybe even specifically myeloma. One of the problems is that it's not as well-known of a cancer and it gets misdiagnosed, so obviously that's part of the reason for Myeloma Action Month in March is to get the word out there and hope other doctors, primary care physicians, like the one I saw, are aware of some of the potential symptoms so that it doesn't get misdiagnosed, especially for people with bone involvement and back pain and things like that.
I think there are disparities in healthcare in general, for people who have health insurance, don't have health insurance that can make a big issue about seeking treatment and not seeking treatment and I think that obviously there can be a disparity in a more rural area, depending on where you live. If you're lucky enough to live in Boston and you're near Dana-Farber, or you live in Houston and you're near MD Anderson, those are places that you can seek out treatment and specialist easily.
If you're in a more rural area with a local oncologist, who's maybe seen one case of myeloma, if any, there's going to be disparity there. Those people are not going to get the same kind of information and treatment as those who are seeking out a specialist or near a center of research where there are myeloma specialists, and specialists, meaning, that's all they deal with and they see a large number of myeloma patients.
That's one of the things that we all as support group leaders and patients emphasize seeing a specialist in addition to your local oncologist. I'm not saying that your local oncologist isn't good, but if they haven't seen many cases of myeloma, they're not going to be as up on what's the latest treatments, the latest drugs to come out and whatnot. That's why we all advise that you see a specialist in addition to your local person.
I think that's where disparities can come, because obviously there are small rural areas in-- Every state probably has a small rural area that someone- that's where they live, its closest to home. They can't get to a specialist, they can't get to a center of influence and I think that's where the disparities can come.
It happens financially too. I'm lucky enough that my husband finds that important and he budgets that every year for both of us to go to a seminar. He went with me for the first time, now with the pandemic, it's been two years ago, well, a year-and-a-half, and he enjoyed it so much as a caregiver, got so much out of going to the IMF Patient Family Seminar down in LA. He loved meeting Dr. Durie and Susie and being with other patients in our support group, but a large number from all over the area with different stories.
I think that the IMF tries to put on as many of those kinds of seminars in as many places as they can, which I think helps with disparity because it gives information. When you're informed, you're a better patient and I think that helps with what I, in my head, think of as disparity, because it's not just financial disparity, it can be information. Knowledge is power and what you don't know can hurt you.
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Myeloma Action Month 2021
Sheri: Myeloma Action month this year's going to be great. Really looking forward to what the IMF has planned, daily activities. I'm one of the people that likes to check things off my list or follow a plan. There's a lot of things that a lot of different groups have planned for March. I like to do those, just to say that I did it. I like to keep my support group informed, encourage them to talk to their local doctors.
I'm sure that most of their doctors do know about myeloma because they have them as a patient, but I think that's one of the biggest things for Myeloma Action Month is informing the public and informing healthcare providers about myeloma, so that it doesn't go misdiagnosed or undiagnosed for too long. I know a lot of support group leaders who are very, not politically proactive, but active in reaching out to their state leaders and whatnot, to make them aware of Myeloma Action Month.
I hope to do some of that this month myself, just to make our local doctors and local leaders more aware, just so that it doesn't get missed. I'm not so much worried here in Boise, because we do have two cancer centers here at two different hospitals, but it's probably the smaller rural areas around us that they may not be as familiar with Myeloma. I'd like our TV stations to be more involved. I don't know that that'll happen, but just about getting the information out that, "This is Myeloma Action Month," and what myeloma is. I hope I can reach one of the TV stations to help us with that this year.
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Dealing with the Pandemic
Sheri: Idaho is one of the last States to have a case. Last March, when it finally happened, it was about the middle of March. We immediately went on-- my husband and I went on lockdown. We're like, we can't see the kids. My daughter, she has two babies now, but at the time, our first grandson was a year-and-a-half old. We said, "We can't see you guys." We couldn't see our sons. We couldn't see our daughter, son-in-law, and grandson. Didn't see my mom, my sister.
For like six weeks, March through beginning of May, we didn't see anybody. I didn't go to the groceryd store, I didn't go anywhere. My husband and I went right before our state had a lockdown. We went, stocked up on everything. Then, that was it. My daughter would pull up at the driveway and roll the window down, so I could chat with her and chat with the grandson and see him from a distance, but that was it.
We had all kinds of trips and travel planned for 2020, including two IMF seminars, no less. [laughs] We were going to go to Seattle. We were going to go to LA. We were going to go to Europe. We had all these things planned. I kept thinking in my head, "This isn't going to last, this is only going to last for a month. Then, we'll still be able to go."One by one, the April trip had to get canceled. The May trip got canceled. The July trip got canceled. I mean everything. The support group leader summit in Dallas got canceled.
I kept thinking in my head, "There's no way these things are going to get canceled." Eventually, it starts to become a way of life, but I know the first six weeks we were really, really, really strict, and then the numbers were not really bad here in Idaho. By May 1st was my husband's birthday and he said, "By golly, it is my birthday. We're going to have the kids over for dinner."
We had all the kids and the grandbaby over for dinner for my husband's birthday, and then we were still careful. They were our bubble, although—By this time, we find out that our daughter is pregnant again. She's being really careful, but her husband is still going to work every day. My husband is still going to work. Our boys are still going to work and in different social circles. We still had to be really careful with them, especially when the numbers here in Idaho started to climb again.
By late June or July, we're not going out. We had gone to one or two restaurants that we trusted and always wore our mask in and out, but then we couldn't do any of that. I still do grocery pickup. I order my groceries online. I drive and let them put them in my trunk. I've been doing that for almost a year now. It's become a way of life. In the beginning, I missed going to the grocery store. Now, I don't really look forward to it. The longer it goes on, the less social I feel, the less I want to be around a large group of people.
I'm hoping when I get the vaccine, I'll start to feel differently and trust going out again, but we do still see our kids. If we know that they're in a situation where they've been around people we don't know and don't know where they've been, then we'll give it a couple of weeks before we see them. The biggest impact has been [00:04:10] not being able to travel and not having our support group meetings in person, having to do those virtually, because we all miss each other and we miss seeing each other face to face.
Our group really does look forward to seeing each other every month. [00:04:30] That's been hard. I do miss them a lot and I look forward to when we can all meet together in person again but those are probably the two biggest impacts that I feel right now, is missing out on travel and missing getting together with people.
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What the IMF Means to Me
Sheri: What the IMF means to me is help, support, friendship. People talk about how myeloma changes your life. To me, I don't regret it. Sure, nobody wants to have cancer, but it has brought people into my life that never would have come into my life before that. A lot of that is through the IMF. All the people at the IMF, the people who run the patient family seminars, the people who run our support groups, and then the support group leaders that I've met through the IMF, they are now friends.
I think what that IMF means is that sense of belonging to a club we don't want to be a part of but we are and we all make the best of it. They are just the most dedicated group of people working for cure for patients, working to make us better support group leaders. I can't even say enough about the amount of time. They've given their life. Dr. Durie and Susie have given their lives to myeloma and to us as patients and support group leaders. That kind of support is amazing. I can't imagine being involved with a better group of people or a better organization.
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