**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**
Today we welcome Diane Raab, a remarkable survivor of multiple myeloma and a licensed clinical social worker from Cheboygan, Michigan. Diane shares her personal journey through the challenging path of cancer treatment, sprinkling her narrative with both professional insights and deeply personal experiences.
Diane's story begins with the diagnosis of multiple myeloma following persistent back pain. She recounts the rigorous process of diagnosis, which led to seven months of chemotherapy in preparation for a stem cell transplant. She remembers the steroids turned her into an 'Energizer Bunny,' enhancing her productivity during treatment.
The focus then shifts to her transplant experience at the University of Michigan. Diane praises the comprehensive and detailed guide provided by the hospital, which helped alleviate much of her anxiety. She describes the fascinating process of stem cell harvesting and the convenience of using a port for medical procedures. However, the journey was not without its hardships, as Diane lost her hair due to the intensive chemotherapy, a side effect handled with grace and humor.
Post-transplant, Diane faced numerous challenges in adjusting to everyday life, from being in a highly protected hospital environment to navigating the risks of infection at home. She had to adopt new hygiene practices, including daily showers with clean towels and washcloths, and careful food preparation to avoid infection risks. Diane also shares the emotional toll of not being able to socialize freely and the adjustments she made to stay connected with friends and family.
Peggy and Diane delve into the physical changes Diane experienced after her transplant, particularly the fatigue and the need to listen to her body's demands for rest. Diane also touches on the mental aspects of coping with cancer, emphasizing the importance of avoiding negative online forums and focusing on reputable sources for information.
Diane candidly discusses the challenges of acknowledging her cancer and the psychological impact of the diagnosis. She stresses the importance of therapy and talking about one's experiences, sharing personal anecdotes that highlight the therapeutic value of open communication.
As the episode concludes, Diane offers invaluable advice for others going through similar experiences. She emphasizes the importance of following medical guidance, staying safe, and finding value in everyday life, relationships, and the simple things. Her story is a testament to resilience, adaptability, and the power of a positive outlook in the face of adversity.
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Peggy: Welcome, everyone. Today we have with us Diane Raab of Cheboygan, Michigan. Diane is a survivor of multiple myeloma since 2020. Diane is also a licensed clinical social worker who will share mostly her personal journey today, although I'm excited to ask her to also sprinkle her professional wisdom into this episode as she sees fit. I assure you, you will feel like you have made a new friend today as Diane shares her experience as a survivor. Hello, Diane. Thank you so much for being with us today.
Diane: Good afternoon, Peggy. It's a pleasure and an honor to be here.
Peggy: Thank you. Diane, let's start with the basics. Let's start with your diagnosis, your experience of undergoing a stem cell transplant, and really how it changed your perspective on life.
Diane: I had been experiencing back pain up in the upper portion of my back for probably a couple of years, and finally it just wasn't getting any better, and I went to my doctor, and she said, "You're really not a complainer. Let's get some X-rays and stuff." Between an X-ray and a CAT scan, within a couple of days she called me in and said, well, there were stress fractures in the thoracic part of my back, but she said, "I think there's something else going on that we didn't expect." Long story short, she referred me to her office partner, who is an oncologist here in Sheboygan, and we went through a series of tests because my primary doctor, who is an excellent diagnostician, was pretty sure it was multiple myeloma, but you have to go through a lot of tests to confirm that diagnosis, as you know.
Peggy: Sure.
Diane: I did that, and it was confirmed, and then I started on seven months of chemo in preparation for a stem cell transplant. During that time, the chemo I was on was actually an injection, and steroids, and another drug I can't remember, but the days I was on steroids were very productive. I alphabetized all my spices and condiments, and people wanted to hire me to come in when I was on my steroids.
Long story short, I was hooked up with the University of Michigan in Ann Arbor, and went down there. They gave me a loose leaf binder. It was amazing, Peggy. From start to finish, everything in that binder told you everything to expect, short of what color socks to wear when you were in the hospital. Whoever wrote it and put it together was so thorough, and I think for me, it just took away all the anxiety, and the what-ifs. What about this, and what about that? It was a tremendous preparation for the ultimate stem cell transplant, which in my case, I was able to use my own.
Peggy: It sounds like you had a pretty smooth experience as far as the transplant went. Would you say that?
Diane: I would say so. I knew what to expect. Went in for, when they do the harvesting of the stem cells, which is a fascinating experience. You just sit there, and they take them out, and they collect them, and they give back what they don't need. It's rather amazing to watch. They tell you, it may take a couple of days for them to collect as many as the doctor wants to have on ice, so to speak, because they freeze them, and they don't have an expiration date, which I didn't realize. Then they found out also that my veins were not ample to just do it through my arms, so I had to have a port put in.
Which actually turned out to be a blessing, because everything and anything that they did to me during my stay in the hospital was through the port. No pokes in the arms. If I needed medication, if they needed to do a blood draw, it was all through the port, which was absolutely, that was a piece of cake.
Peggy: That's good to know.
Diane: The thing that wasn't a piece of cake was, when you go in for the transplant, they give you a massive dose of chemo to kill everything. Within five days of receiving that, I woke up one morning, and I thought, "What's all that fuzz on my pillow?" It was my hair. Yes. I knew that I was going to lose it, but the nurses were so good. The one nurse came in with a pair of like little scissors and said, "Let's get rid of all that mange, and just even it out a little bit." That was not a big deal. I was expecting it.
Actually, the chemo that I was on prior to, the transplant, I had none of those side effects, no hair loss, nothing. You wouldn't have known that anything was really going on except the wonderful energy I had with my steroids. I loved my steroids.
[laughter]
Peggy: It sounds like they made you the Energizer Bunny.
Diane: Which I was before. You can times that a hundred.
Peggy: Yes. Most people hate the steroids, so it's nice to find a fan.
Diane: I do know a friend of mine up here, if I can interject.
Peggy: Sure.
Diane: He's also going through the same thing, and he does not like the steroids, because they make him hyper, and jumpy. I understand that, but I was only on those the day that I got, it's a Velcade injection. I only took the steroid on that day. It's not like being on the steroids. A lot of people that have respiratory issues, they're on them for days or weeks on end, and they can make you more jittery, sort of jumpy inside. I'm sure for some people that's an uncomfortable feeling.
Peggy: Sure. Let's jump into, this season is about when, I'm home, now what? Let's talk about when you got home post-transplant, and you're trying to get things back to normal. What were your biggest challenges, Diane?
Diane: The first challenge is when I was discharged, I had to stay within so many miles of the hospital, and the hospital's in Ann Arbor, and I'm in Sheboygan, but I was fortunate and blessed to have a friend that had a condo in Ann Arbor about three minutes from the hospital. I was able to stay there for those first few days that I had to be close to the hospital in case there were any side effects or anything that would bring me back into the hospital.
The first challenge was, when you're in getting the transplant, you're in a very protected environment. You have a room to yourself. The air is purified on the floor. You can walk, you can take walks, but you can't go through certain doors because the air is not purified. Everybody that comes into your room is gowned up, and has masks. This was also during COVID. You're in this very, very safe environment. Then you go home, and it's nice to be out in the fresh air.
I was at this home with my partner, and she sneezed, and I was just like, "What are you doing?"
Peggy: "You're not supposed to do that."
Diane: Even though she sneezed into her shirt, but mentally, you're so aware of not being around or trying to be away from any risk of infection or colds or anything like that. Then coming home, the adjustment to not being able to have people over. I am very blessed to have a lot of friends that care a great deal about me, and they all want to visit. It's like, "No, no, can't do that." It was April, the end of April going into May. It was spring and going into summer.
There's that hundred days of quarantine after the transplant. People, when they wanted to see me, they came over as long as we could sit outside. If it was raining, they would wear masks indoors. The adjustment also to showering every day, and using a clean towel and washcloth every single day, preparing food, making sure that it's not necessarily on a wood cutting board, but maybe plastic that's more easily run through the dishwasher.
All the things that you don't think about to avoid any risk of infection or germs. Even when the lawn guys would come by to cut the grass, I had to come in the house and close the windows and everything because of all the stuff that is being blown through the lawn, through mold and different things. It's funny because I love the smell of a fresh-cut lawn.
Peggy: I was just thinking that.
Diane: When it's first cut, it just smells like summer. You have to stop doing what you used to do and think about it. Even Jon would say to me, "Do you want to go for a car ride?" To run an errand. I wasn't going into any stores and she's the shopper, but I started to feel like the family dog. When you say to the dog, "You want to go for a ride?" The dog's wagging its tail.
Peggy: That is really funny.
Diane: Jumping up and down. It's like, "Oh, yes, a car ride." Open the window. Then if somebody's cutting the grass, close the window. It was just something you don't think about. That your everyday habits, you have to rethink them.
It's not awful. It's not the end of the world. I think I've said to you many times, and to a lot of my friends, there are a lot of people that have it a lot worse, but the clean towels and how you prepare food, no leftovers. You don't know what bacteria might be on a meal that is reheated in the microwave or in the oven. Things you don't think about. I would reheat spaghetti in a minute because it's always better the next day. But you don't, because there's just too much of a risk for the things that you have absolutely no immune system against.
Peggy: That is so interesting, Diane. Also the extra expense, more laundry with the towel situation, and more groceries. I love leftovers, so that would be terrible for me. Again, we also know this is short-lived. There will be an end, and it's what you have to do. Let's move on to more of the physical changes that you encountered when you got home.
Diane: Probably, and I'm pretty sure that most people that have been through a transplant like this or any kind of chemo is the fatigue. Physical changes, I lost some weight in the hospital, and part of that was when I had that first massive dose of chemo, I had five days of nausea. Toast and tea doesn't really take you far. Dry toast and tea. The weight loss was, that was fine with me. The fatigue, like we mentioned earlier being the Energizer Bunny, I would get up to do something, and maybe 10, 15, 20 minutes into it, I had to sit down. I have to take a rest.
It's like, "Well, I'm not liking this. This is not me." You have to give into it. I've done a lot of reading about it. Taking naps isn't the cure all. It may feel like that's what you need to do. If that is how you feel, then you should listen to your body and do that. Don't expect that you're going to wake up refreshed and ready to hit the ground running because it's just not going to happen. I think I found myself underestimating what my body went through.
You've got all these new clean stem cells, and then you also have to go through getting all of your baby vaccines all over again because your whole system, it's-- I've compared it to an Etch-A-Sketch. You would write on the Etch-A-Sketch, and turn it upside down, and shake it, and everything's erased. It's pretty much what your body has just gone through. Anything that you had before as a child or as an adult, even with shingles vaccines and flu vaccines, it's all been erased. You're starting over.
Peggy: What a great analogy.
Diane: I had to keep thinking about that when I wanted to see people. I didn't go out, didn't go to restaurants. If anybody saw me, they came here outside on the deck, which was very, very pleasant. One couple came over, and he brought his guitar, and played music on the deck. It was just such a treat. But you have to pay attention. You have to accept the fact that you're like a baby. You're like a newborn baby that has no immunity to anything, and you are susceptible to everything. I think mentally it's important for the patient to remind themselves of that because we're social creatures, and the desire to be with people is very strong, and powerful, and you can't. For your sake, you can't do that.
Peggy: You were also going through this during COVID. Talk about an extra layer.
Diane: In a way it was almost a blessing, because COVID started almost a little bit the year before. We were already sort of in that, everyone was wearing masks, not going out, staying away six feet apart. I almost had like COVID training before this, because COVID happened in 2020. My diagnosis wasn't until late 2020. We were already in that mode of staying more isolated, not in big crowds, not being around sick people.
Then when I went through my situation, it made it even more mandatory. For me, I can say that the adjustment was pretty smooth because we'd already been sort of living that lifestyle of being a little more isolated, careful who you're around. I think anybody maybe going through it now, they've also gone through COVID. They know how our lives changed pre and post COVID. It's like two years. I think most of us think of, we used to talk about events that we did last year, well, it wasn't last year. It was pre COVID.
Peggy: Yes. Yes.
Diane: Because it's like two years that people feel like they lost.
Peggy: Uh-huh. I agree.
Diane: Tell you the truth, I was president of the Rotary Club in Sheboygan during COVID. The year that nothing happened.
Peggy: For an extrovert like you, that's not good.
Diane: All of our activities and fundraisers was like, "No."
Peggy: Did they make you do that year over again?
Diane: I've asked for a do over. Yes. We did a lot through Zoom, obviously. I think even families did a lot through Zoom because they couldn't get together. I can brag and say that we maintained our membership all during Zoom during COVID. We didn't lose anything. I was happy about that. Even though it was all done like you and I are doing right now. On a screen.
Peggy: We're remote, and we all learned how to Zoom. That was actually a good thing. I know that you're just so wonderful. I know you've accepted what's happened to you. Tell us about when you got home, some of the neat things that you did just to keep it upbeat and on track.
Diane: I have to tell you this in kind of a twofold part. When I first came home from my doctor, and she told me what she thought I had. Of course, I went out in the car, and I Googled it right away, and came home, and I told Jon, "Well, I think I only have two or three years to live. What do you want to do?"
Peggy: Oh no.
Diane: Then, of course, now, fast forward.
Peggy: That was the pity party, right?
Diane: That was, that didn't last long after I got educated.
Peggy: Yes. Good for you.
Diane: One of the things from that that I learned was, I was getting regular blood work done, and looking up all my numbers. I finally made a promise to my oncologist that I would stop trying to interpret all the numbers, and looking them up. It's like, "What does that mean? What is that an indication of?" Instead of playing Dr. Google, I would wait to see her. She could explain it all to me. It really eased my mind.
I'm probably a frustrated doctor if I had life to do over again. I'm very interested in medicine, and I seem to be able to retain a lot of information about medicine and medical issues. That was making me a little bit, let's see, I was getting obsessive about reading all the test results. I still look at them even to this day, but I don't interpret them. I just think, "Okay." I know that the blood work comes back, and it's high, and it's low, and it's high, and it's low. It's like, "Well, I'm not going to worry about it. I feel okay."
That's one of the things that I stopped doing, was looking up all my test results. I also stopped joining some of the websites that are out there for myeloma or leukemia, lymphoma. I stopped reading some of the testimonies or testimonials that people were giving, because everybody's situation is so different and so unique. When I first started reading all of these, I was starting to feel pretty defeated. Those two or three years to live was really what I thought was going to happen by reading all that stuff.
I had joined some of those groups, and I think their intention is to be supportive to one another, and tell me your story, and I'll tell you my story, and we can compare notes, and maybe not feel so weird or unique or different. I think that's important, obviously, to feel like you're not alone. At the same time, you have to really be selective in what you read and what you take in, because it can start to play a number on you, especially if you're having a day where you have no energy.
You walk to the end of the driveway to get the mail and walk back and feel like you need to take a nap. That's like, "Well, crap." Yes, but that's okay. That was one of the things I stopped doing. I thought the more I know, the better. In some cases, that's true. But you have to go to sites that are reputable.
Peggy: Absolutely.
Diane: I don't want to name any of them, but there are some sites that are just very trustworthy, and others that would, make you want to go run out the house screaming.
Peggy: Yes. Now, this is a good conversation, and I appreciate that, Diane, because we tell everyone, there is so much support online and through social media, but you raise a really good point. It's not always for everyone.
Diane: That's right.
Peggy: You have the right and the ability to advocate for yourself and decide what is good for you. Maybe at that time, maybe it's not so good. Maybe a few years out, you'll, dabble again and look into it, but that's such a great point. Thank you for sharing that.
Diane: Like you said, you have to know yourself, and not everybody has a complete understanding of themselves. We all have our little quirks and flaws, but you have to know if you tend to be positive versus negative, if you tend to look for the dark cloud, and if your glass is half full or half empty, if you see it is only half full, get another glass.
Peggy: Well, there's some words to live by. Absolutely.
Diane: Again, like I said, the importance of knowing yourself and how susceptible you might be to reading someone's story that makes you feel like it's the end of the world versus someone's story that uplifts you, and gives you hope and promise. We all have to die of something. During this journey with multiple myeloma, it never goes away. We know that, but it's treatable, and it's manageable. That's the thing that you always have to remember. This can be managed, and there may be some side effects from some of the-- like I'm on maintenance chemo. There's some side effects, but they're not awful. Even the side effects are manageable.
Peggy: For me. You're here, right?
Diane: That's right. That's become a little theme with our book club, and some of our coffee clutches. We're here.
Diane: That's right.
Peggy: That's what we have to remember at times. I'm going to jump in and ask in our notes, you had said something about the cool hats that you get to wear. I'd love to hear about the hats.
Diane: I wish I could show them all to you, but I made up my mind that when I lost all my hair, and I wasn't going to leave it all mangy-looking, I shaved my head, and I think I had about 12 eyelashes left. Anyway, I did not want to wear a scarf. I see so many ladies in particular, because to me, it just screams, I have cancer, and I didn't want to do that, and I didn't put a lot on Facebook, social media. People tell you when they fart, and it's like, I wasn't interested in doing any of that. Only people close to me that I shared that with, but in the interim, I got red sequins hats. I got city of Sheboygan hats. They're all baseball caps, and some of them are like, I don't know how to describe it. It's more like you pull it down over your whole head. It's hard to describe, but so I wore the hats, and the hats were a lot of fun, so I enjoyed that part of it, and I will tell you, when I did lose my hair, I did pray, and I asked God, "When it comes back--" I knew I was going to lose it. No big deal.
When it comes back, could you make it curly and platinum and well, it actually came back wavy, curly, wavy.
Peggy: It's very pretty.
Diane: I get to see Diane for about a year, and then my old hair came back, which was poker straight. Now this year, it's got a mind of its own, and I just-- it did not come back platinum. I know the gray is still there, but at this point, I say this almost every day, it's only hair. Some days you have good hair days, and bad hair days, and bad hair days. It's only hair. I don't worry about it because it's the least of my concerns.
Peggy: You look marvelous. Don't worry about it.
Diane: Oh, thank you. Thank you.
Peggy: Diane, your career as a professional counselor, you had that advantage. Let's be real, how important is it in your mind that people feel comfortable talking with a professional post-transplant if in fact they feel like they need it?
Diane: I'm probably very biased in this area because, I believe everybody can use therapy. Everybody, including myself, even before I finished graduate school, one of our professors encouraged us to put ourselves in therapy, and you really learn more about how to do it when you're in it versus when you're in the academic world. They don't really teach you how to do it. I think that the most important thing is being able to talk about it, and not bury it.
A good example, when my mom was terminal, she was in the hospital, and my dad and I were at the hospital, and he went to get a coffee or something, and this young lady came down, and she identified herself that she was the hospital social worker. I said, "Oh," I said, "You must be here for my dad. He just stepped away." She said, "No, I'm here to talk to you." I was like, "Me? I'm a social worker."
Being your, what is it, the old saying that he who treats himself has fool for doctor. For me, it was hard to say the word cancer. I didn't realize that for almost a year. When people started finding out about my transplant and everything, they said, "Oh my gosh, we didn't know you had cancer." Every time they said that, I could feel my body stiffen. I always wanted to correct them and say, "Well, I have multiple myeloma." It was easier for me to say that than to say cancer.
It took me a long time, even to this day. I talked to my brother the other day, and he said, "So, how's your cancer?"
Peggy: Yes, it's a terrible word.
Diane: My numbers are just fine. [laughs] For me, maybe other people would find it a lot easier. If you don't, I think it's normal, because I think we have such a notion of the word, and it's an awful disease. I don't care what level or what part of your body has it, it's just awful.
Peggy: For sure.
Diane: It sucks. In my case, in a way, I feel blessed because I have a cancer that can be treated and managed. I do what I can with the doctors and the medications to behave myself and do what I need to do. That's part of it. I think, I don't know if being a therapist has made me better at that or not. I have to be aware of my own tendency to be, "Denial is such a wonderful thing." When you're mad, or when you're angry, or you're sad, it's okay. Express it. We all express that in different ways. As long as you're not doing it in ways that are hurtful, or destructive to you and your progress, feel it. Feel it, because it's there and it's legitimate.
Peggy: Diane, thank you for that. Thank you for the pearls of wisdom there. We have been at this for a bit, and we're going to start to wrap things up. I guess I want to ask you if you could share with listeners, and I think you have a little bit already, but just your best tips when you got home, anything else you may have wanted to share. Because people listening to this episode today, they're looking to figure it out when they get home. Anything else you have to add?
Diane: I would say, do what they told you to do in terms of watching for bacteria, and germs, and infections, and staying away from people. If you do go out or people come over, you can wear a mask. They can wear a mask. Do that for yourself. We've all had COVID training for that. It's not necessarily awkward, but do all that stuff those first hundred days after you get home. Keep yourself safe. Take walks. If you have the energy, take a walk every day, even if it's just 10 minutes, 15 minutes, you could do that 2 or 3 times a day. If you feel like it, if you feel like you have the energy, shower every day, get ready like you're going to go someplace every day, like you're going to face the day.
Even if all you're doing is going out on your porch, or walking down the street, or sitting on your deck, or going for a car ride and wagging your tail.
Peggy: Yes, I love it.
Diane: I think looking for value every single day in whether it's relationships, friendships, your partners, spouses, kids, grandkids, pets. I think when something like this happens, it gives you a whole different perspective on what's important. You value things differently. I think it's almost like an opportunity to step back and say, "I'm looking around, and I have good things. I'm fighting this and I'm going to be okay, but I have good things," and value the simple things, because all of a sudden those matter more than anything.
Peggy: I love this, Diane. Thank you so much.
Diane: Thank you, Peggy. You and I have stayed in touch for a couple of years now, through John Koston. I'm grateful for that too.
Peggy: I am grateful for that too. Thank you for being our guest today. You look great, and I can tell that you're just thriving, and I know you're being asked to be on many committees, and all your volunteer work, and we're just so lucky to have you. Thank you for this.
Diane: Thank you. Thank you very much. Thank you for you and what the whole bone marrow transplant link does. I've participated in a couple of your coffee clutches. I appreciate all that you do.
Peggy: Aww, thank you.