Listen to Multiple Myeloma Patient Diane Hunter Share Her Story

Diane Hunter: In April of 2016, I went for my annual checkup with my endocrinologist for my thyroid condition. Going over my blood work, she noticed that I had protein in my blood and so she circled it and she said, "When are you going to see your primary care physician." I said in a few weeks, I have my annual checkup. She said, "Take this with you, and have him take a look at it because he may want to send you to see a hematologist." 

I did like she asked me to, and I showed it to him and he said, "That's not much, we won't worry about it." Well, this was like about April and about July of that year, I started to experience back pain. I ended up going to primary care about the back pain. They gave me a steroid shot some pain pills and send me home because they were saying, "You must have been in a car accident, or you strained your back lifting something or it's from a primary injury?" My answer was no to all three of those. 

I ended up a couple of times going to primary care for the back pain. Each time they gave me pain pills and steroids shot. When I brought it up to my doctor, and I asked him to send me for MRI, he says, "You don't need an MRI, it'll go away."Of course, getting a steroid shot and the pain pills, it would go away temporarily, but it would come back. By October, the pain was consistent. It had gotten to the point that it was painful getting in and out of bed. 

After multiple attempts to get my primary care doctor to send me for an MRI, and he just refused, he just stopped-- they wouldn't even respond to my phone calls asking for one. I ended up looking up chiropractors in the Montgomery area on Google. I just made an appointment to go see a chiropractor because I couldn't take the pain anymore, because my husband thought I was doing too much, I had over-exerted myself. My appetite was diminished, it was just a number of things that were so out of character for me. 

I just took things into my own hands, I said, "I've got to do something, I've got to go see someone else." Made the appointment, my neighbor sent her husband to take me. The chiropractor did X-rays and immediately saw multiple compression fractures in my vertebrae. She made an appointment for me to an imaging center and I went that day to the imaging center and dropped the DVD off to her on my way home. 

She called my house and said, "Don't come back the next day to go over the results, I'm going to find you an orthopedic surgeon to see because you do have multiple compression fractures," She told me, "You know where they were." We're coming up on Thanksgiving and everyone is starting to work less for the holidays so she was able to get me in to see an orthopedic surgeon. He like everyone else said you must have been in a car accident and all this and I'm like, "No, no, no." 

He put me in a back brace to cushion my back from bumps when I had to ride and stuff like that. I wore that through the Thanksgiving holiday and in January, he wanted [00:04:20] me to start going to the osteoporosis clinic for the ER practice, and I had to go do blood work for that. The day after Christmas, [00:04:30] we went to do the blood work. Two hours after getting home from doing the blood work, the hospital called and said go directly to ER you have too much calcium in your blood. That was the beginning of my diagnosis. 

I spent the day after Christmas up until the beginning of January, I was in the hospital for about 10 days and that was when I met Dr. Keith Thompson, who's my oncologist. I was so out of it, that he came into the room while I was like in the holding area where they're waiting for a bed for you and he talked to me and he said, "I am tasked with finding out what's going on with you." He said, "I'm going to do all that I can to get you feeling better. That was the first time I saw him and I did not see him anymore until I was discharged from the hospital. 

For those 10 days, they did a complete body X-ray, and everything and they told me that they suspected that it could be multiple myeloma. When I was discharged from the hospital, they did a bone marrow biopsy and that was the confirmation. 

 [END OF AUDIO] 

Diane Hunter: They diagnosed me in January of 2017. I started treatment then and by July of 2017. There was no sign of the cancer. In August of 2017, I had a stem cell transplant, on August 29th which was successful. My daughter says I have two birthdays. May 23rd is my natural birthday and August 29th is my rebirth day. Getting that diagnosis, I thought my husband was going to pass out when the doctor said that. 

I didn't know how I was going to tell my daughter because they were saying life expectancy is about five years once you've been diagnosed and my daughter is in her second year of college. She was going back to school and I didn't want to tell her that. My oncologist told me your daughter  is stronger than you think. When I did call her and tell her, her statement to me was, "Mom, cancer is not a death sentence." That made all the difference in the world. 

I went through my treatment, I went through my stem cell transplant with the attitude that God was with me. God was for me and there was nothing that I was going to go through tha  He wasn't going to help me to get through. Every day when I would wake up, I would say "God, I thank you for today and because you made [00:02:00] today. Today is going to be a good day. No matter what happens from the beginning of the day to the end of the day." 

I never complained about having bad days, why? Because I knew there was some days that I wasn't going to feel good. That was expected, but it wasn't anything to complain about I just had to get through it. 

 [END OF AUDIO] 

Diane Hunter: just feel like my cancer journey is something that God allowed me to go through for the benefit of somebody else, someone that's coming behind me that's going to go through it because if I got through it, then they know that it's a possibility for them, that they could get through it. I have to admit I looked 100% better after I completed that journey because I had lost the excess weight. 

My daughter was—When I would go up to college to visit with her, she would tell her friends, "Look, that's not my girlfriend. That's my mother. She has a husband. Don't be trying to flirt with my mommy." [chuckles] It was just amazing. I never had any side effects to my medication, to my Revlimid. When I would go for my treatment, when I started going, I was in a wheelchair. I couldn't walk any distance. I was  experiencing-- That was January-February timeframe, beginning of March, when we would get to the cancer center, I'll have to get in a wheelchair and they will wheel me up to my doctor's office, wheel me into the treatment room. I would sit in that treatment room and I would look around and I would say, "In spite of what I'm going through, God, there are some people that are having it a lot harder than I am." 

[END OF AUDIO] 

Diane Hunter: I would say that for anyone that's diagnosed with cancer, you have to have a support team. That support team is so important. For caregivers, as much as you feel—Especially with spouses, as much as you feel that it's your responsibility to take care of your spouse, you definitely cannot do it all alone. It is a lot to take on. I love to cook. I'm a cook. When I stopped cooking, everybody knew something was drastically wrong. I could not cook during that time. My plates that I would eat my meals out of every day, stoneware, my dinner plate was too heavy for me to pick up. I couldn't even pick up my dinner plate. My husband would have to fix my plate and bring it to me. 

People can take a lot for granted, but my husband, he told me, he said, "With you being down like you were, it gave me a greater level of appreciation for what you do," because he then was tasked with laundry, shopping, cleaning, meal preparation, picking up the prescriptions. I mean, everything.  

Living here in Alabama, most of my biological family is in Michigan, but he has siblings that ive here. Then I had church members and friends that I had met since I had moved here that was like family. They would tell me, "He won't let us help."  I told him, "Let them help. They're going through this with us so let them help you. 

When I was in the hospital, he used to come to the hospital and sit there and fall asleep. My husband drives the school bus and we also have a small farm with some animals that he takes care of. I told him, I said, "Sweetheart, you don't have to come down here every day. The nurses are taking excellent care of me. " I said, "You do what you need to do at home, getting the kids to and from school, and if you're tired, get some rest. If I need you for something, if they need you, we'll contact you." 

I didn't put him through that. 

Even when I was in Birmingham at UAB, for my stem cell transplant, he was going to take a leave from work and come. I said, "No, I'm not going to make you sit in this room with me 24 hours a day indefinitely, and all you can do is watch television. You can come up on the weekends." Him and my daughter would rotate weekends. I had a girlfriend that lived in Birmingham. She was an assistant principal for a middle school. She would come to the hospital to see me every single day. She spent some nights with me and would get up and go to school the whole nine yards. I just felt like it was my journey. I was the one that had to take the action. I had to do what the doctors told me I needed to do. I had to have the faith and the confidence to know that the word of God says that I'm healed. Then I'm just waiting for the manifestation of the healing to occur in the earth realm because in the spirit realm, it already happened. 

I wanted them to do the things that was necessary for them each day, and not worry about me. 

 [END OF AUDIO] 

Diane Hunter: Reading through information that I would pick up at the cancer center, there was a reference to them and then some local published magazines had a little blurb in there about the local group meeting at Frazier United Methodist church. It was about two weeks before my stem cell transplant. I called the number and talked to the leader of the support group. They weren't going to have a meeting before I was going to have my stem cell transplant. He and his wife and another one of the support group members and his wife met me and my husband at dinner at Applebee's. 

They talked to me about the stem cell process; what it was like, what I could expect, things that I needed to have with me to be prepared because there were some things the hospital was going to provide, and there was some things that they weren't. They said, "No, we're going to call and check on you while you're there. You call and let us know if you need anything." They were so sweet. They were so kind. I was so prepared for what was coming when I went for my stem cell transplant.  Since then, I am co-leading the support group with them. That's how important it is to me.  

[END OF AUDIO] 

Diane Hunter: The most important thing is I tell people that the person that takes care of your health is a part of a team. They don't just tell you everything, you have to ask them questions. I go to my doctor's appointments like I'm preparing for a meeting.  I have notes. I've always done that because the doctors that I had in Michigan, they always ask, "Do you have any questions for me?" 

They will go in their office and print up stuff from the internet or bring books in and show you things and make copies of it to explain what's going on with you. That's what I was used to, but I'm noticing here in Alabama, it's different. You spend very little time talking to your doctor and it's almost like a lot of them don't want you to ask any questions, but the doctors that I go to realize that that's what I'm going to do. 

They haven't had a problem with it, except for this one particular doctor. I will never mention his name because he knows who he is. You have to hold people accountable for providing you with what you need from them. If they don't, move on, because they're not the only doctor. It's so important for us to do that. 

I didn't realize how important it was for you to keep track of your family's medical history. When I prepared to go through the evaluation to determine if I was a good candidate for a stem cell transplant, I had to accumulate my family's medical history. It's interesting to see the pattern. My family have a history of high blood pressure. They have a history of some heart disease.  There's a history of thyroid issues. 

Now, for my daughter, she knows symptoms. When those symptoms start, she knows not to ignore. We ignore too many things and just hope over time they're going to go away. Everything's not going to go away. Anything that's unaddressed is going to compound themselves. It's going to just grow into something else. 

I tell people, the best advocate you have is yourself. You have to find your voice. No one else has your voice. Your voice is unique to you and you have to teach people how to treat you, how to respect you. That's how I feel about my doctors. I trust you. If I can't talk to you and get a respectful and a decent answer back, then we're not a good fit for team. 

 [END OF AUDIO] 

Diane Hunter: The most important thing is I tell people that the person that takes care of your health is a part of a team. They don't just tell you everything, you have to ask them questions. I go to my doctor's appointments like I'm preparing for a meeting.  I have notes. I've always done that because the doctors that I had in Michigan, they always ask, "Do you have any questions for me?" 

They will go in their office and print up stuff from the internet or bring books in and show you things and make copies of it to explain what's going on with you. That's what I was used to, but I'm noticing here in Alabama, it's different. You spend very little time talking to your doctor and it's almost like a lot of them don't want you to ask any questions, but the doctors that I go to realize that that's what I'm going to do. 

They haven't had a problem with it, except for this one particular doctor. I will never mention his name because he knows who he is. You have to hold people accountable for providing you with what you need from them. If they don't, move on, because they're not the only doctor. It's so important for us to do that. 

I didn't realize how important it was for you to keep track of your family's medical history. When I prepared to go through the evaluation to determine if I was a good candidate for a stem cell transplant, I had to accumulate my family's medical history. It's interesting to see the pattern. My family have a history of high blood pressure. They have a history of some heart disease.  There's a history of thyroid issues. 

Now, for my daughter, she knows symptoms. When those symptoms start, she knows not to ignore. We ignore too many things and just hope over time they're going to go away. Everything's not going to go away. Anything that's unaddressed is going to compound themselves. It's going to just grow into something else. 

I tell people, the best advocate you have is yourself. You have to find your voice. No one else has your voice. Your voice is unique to you and you have to teach people how to treat you, how to respect you. That's how I feel about my doctors. I trust you. If I can't talk to you and get a respectful and a decent answer back, then we're not a good fit for team. 

 [END OF AUDIO] 

Diane Hunter: My girlfriend would say, "You know what? I never felt like we were wasting money, because if you put one school of it in your mouth, that was better than nothing at all. You can't ask for more than that." because everybody can attest to the fact that they have at least one friend that is so much like family, that you might care more for that one friend than you do some people in your family. 

I would encourage everybody that's going through a cancer journey to open up and allow your friends, your family, the people in your close community, and as they call it, your bubble, let them help you, because they're struggling just like you are. They're trying to get through, just like you are. I think in some ways, it hurts them even more, because there's nothing that they could do to make you, as they think, feel better I'll never forget this, my sister-in-law came to the hospital, and the nurse was so busy. She kept coming in the room apologizing for not being able to come help me take my shower because I was a fall risk and couldn't get out of bed without the nurse here. My sister-in-law said, "If you will authorize me to, I will help her shower." 

She helped me take a shower. She lotioned and greased me up like a newborn baby, [chuckles] and put my clothes on. Now, here I am, a 67-year-old woman that could not do her own shower alone, having another grown woman to help her. That's a stretch, but how many people will do that? I'll never forget that because that's what love is. You care about a person when you do that, and you trust the person when you will let them do that. She told my husband, "You do what you have to do. I'm going to be at this hospital until you get here." Now, that's after she's worked all night. She came straight to the hospital to be there with me. 

[END OF AUDIO] 

Diane Hunter: The value of the International Myeloma Foundation, they have been absolutely amazing. They provide support beyond what I think anybody could imagine. If you call them about anything, if it's something they don't offer, they're going to find out. They offer so much that I don't think there's anything that they won't address for you. I had an opportunity to attend the last support group summit, and it was a life-changing experience to see all the people there that's gone through cancer and how they're doing now and to hear what the pharmaceutical companies are doing, what they're engaged into. 

All of the pharmaceutical companies are engaged in helping to communicate better with people of color and to meet their needs, to help eradicate the disparity in medical care. Things are definitely looking up for multiple myeloma patients. I can say that my life has been better after going through my cancer journey than it was before because of what people have done to get us to this point.  

[END OF AUDIO] 

Diane Hunter: Last year, Dr. Ennis Shelton who was over my stem cell transplant, we were on the local television station WSFFA and we did an interview about multiple myeloma awareness and it was great. The news commentator was unaware of what the basic symptoms were and she said, "You name some things that I'm dealing with, and which is common for most people. A lot of African-Americans have never heard of it before. One of the things that I have planned to do for this year is to touch bases with the chiropractor that helped me to get to my diagnosis. 

There is a letter that the international myeloma foundation provides us a template with, with the basic symptoms in it because it dawned on me that if she helped identify what my issues were, how many other people could she possibly be coming in contact with? I'm going to be touching bases with her and providing that information to her for potential clients coming in to see her. I'm also going to provide that information to my primary care doctor, even though my primary care right now is subject to my oncologist and my primary care doctor gets information from him, I'm still going to provide her with that information too. I am always, like I said, talking to people about it. 

When I go to Detroit to take care of my sister, I'm going to find out about their local chapters there. If they don't have any, look into the possibility of them starting something there. That's what I have on my to-do list for this year because COVID made it difficult for you to go talk to people. With a lot of people not having  Wi-Fi access, they're not able to Zoom. A lot of people even if they could, they wouldn't know what to do. I'm just glad that things are opening up. 

 [END OF AUDIO] 

Diane Hunter: I have been dealing with the pandemic very cautiously and open-minded.  I'm one of those people that I see what's happening with my natural eye, but then I pray and say, "God, show me what's happening in the spirit realm." There's a lot of good that's come out of the pandemic. It was difficult not being around family. 

Christmas was very quiet. I've never did Christmas dinner for four people. [chuckles] That's usually a pretty big deal. I did do some of my Christmas baking and stuff and then I sent that off to the family members that I would have shared Christmas with so that they could still get something that they would have gotten for Christmas, but I was okay with not being able to go to church because I discovered some ministries that are amazing, watching YouTube that I watch, but it was just the lack of being able to affiliate with people one-on-one. 

That was difficult, but my family, we established every Wednesday at 12 o'clock, we have a family call. My nephew is a minister, and so he gives us words of encouragement and we touch base as a family and it's been amazing. The thing about it is when you love, no matter what happens, that love doesn't change, you adjust, you shift, and I have to make a shift. 

It's been pretty positive for me because I've looked for the good things coming out of it. The importance of the disparity in health care for people of color came out of it. It's been there all the time, but it really reared its ugly head when we started to deal with COVID, and even still now with trying to get the vaccines out, a lot of where people of color live, these people don't have Wi-Fi access, and so they don't have computers and they don't have internet access, so they couldn't log on and register to get their shot, things like that. 

Resource-wise, I've never seen people be so giving. There isn't anyone in America that can say that they're hungry, because I've never seen so much food being given away. All you had to do was go get it. The condition of schools in the inner city became highlighted once the kids had to work virtually, the reality of them not having the infrastructure in their buildings for internet access, not having tablets, laptops, desktops, it's so much the ventilation systems and the facilities, the logistics for the building, all of these things have been problems that have always existed. 

The way we feel about each other, that's a really big thing that came to light and a lot of families reconnecting as a family because-- we talk about getting back to normal, but I agree with some of the people that I've heard speak during the pandemic, the way we was living was not normal. We're existing in a house with people. You're not sitting and eating and talking. You're like ships passing in the night. 

Roles had to reverse, some husbands had to stay home with the children while the wife went to work, and those people gained a different level of appreciation for how was the wife working, dealing with the schoolwork, with shopping, the laundry. Oh, so we found out the people that we are, what our shortcomings are, things that we need to work on. 

Some people found out that, "We've really grown apart and we've just been going through the motions of this thing." Now those adjustments are coming. I think the one thing that really came out of it is that people found out that you need to be present. You can't throw stuff at people and think everything's going to be okay. They need a part of you.I've fared pretty good during the pandemic, even though I tried to back away from technology when I retired, it forced me to have to buy a brand-new laptop because that old desktop was not working to be able to communicate with the outside world, but [00:06:00] it's been good. 

[END OF AUDIO] 

Diane Hunter: To me, the IMF means hope. It is an organization that I didn't know existed until I needed it and it has provided me with so much hope for the future. I am grateful for the people that have invested their time and their talents into establishing an international organization like that to help people that otherwise wouldn't have anywhere to go. 

They make you feel so special and they think about things that you are going to need before you even could think of it. They try to make it available for you. I started making contributions to the IMF because I believe that anything that has been a benefit to you, you need to sow into its life so that it could benefit others. 

The hunting lodge that I cook at had agreed to allow me to host our fundraiser at the hunting lodge for the IMF and then COVID hit. They told me that offer still stands. As soon as they give the green light for groups to assemble again, we'll start planning it. I will be committed to working with the IMF for the remainder of my life. That's how important it is to me and they are a godsend. 

[END OF AUDIO]