Coffee with All4Cure - Cindy

Seven years ago, my husband was taking a break from working, and we had to change our health insurance. We were the healthiest people we knew at 59 years old! We were vegans, and neither of us had health problems, so we decided to get the cheapest health insurance available until my husband’s new job could cover us. Before the insurance switch, we went for our annual physicals. The bloodwork I got was more extensive than normal, so it was a fluke when they determined I had something wrong with my blood. I was shocked. ‘Well, your bloodwork was different,’ they said. I heard things like, ‘absolute monos’ and I didn’t know what any of that meant. I was sitting at a computer putting these words in Google, and all that came up was Multiple Myeloma. I saw the two to three-year life expectancy. I hung up the phone and immediately called my husband and asked where he was. He said, ‘I’m at Blue Cross Blue Shield, I’m just finishing up the insurance.’ I said, ‘NO, STEP AWAY FROM THE DESK.’ He didn’t understand why, so I had to tell him over the phone. ‘I have a fatal disease that is going to kill me in two to three years. We need a better health insurance plan.’ That’s how I came to know I had myeloma. It was not the best way of learning or sharing the news, but we love to tell that story now; we find it kind of funny!

I do have an adorable little dog. The breed is called Coton de Tulear. You’ve probably never heard of it, but it’s a little white dog. They are extremely friendly and loving, and our little dog is called Ladybug. I bike every morning and Ladybug gets in the basket on the front of my bike and I look like the movie ET as I ride through the neighborhood. Sadly, believe it or not, Ladybug got diagnosed with cancer. That was only a few weeks ago, and since then she’s had surgery and she’s even doing chemo now. We both go to chemo every week! She’s doing very well but it is an aggressive cancer, so we don’t know how long she’ll live. The breeder that we love is retiring, and they had one more puppy that we could have, and we had to take it! It is a little crazy because we have a house full of people. My son, his wife, and my granddaughter are visiting while we’re trying to train a new puppy that... let’s just say isn’t doing very well in that regard. But it’s so much fun! Ladybug is playing constantly, you know, roughhousing all day long, so we think it’s great for her, too. She is doing really great right now, so we’re just going to live in the moment and enjoy her while we can.

One piece of advice that I have really figured out after all these years is: it’s worth it to attend a support group meeting. Support groups are really great, I know this from my career as a counselor, but when it was suggested to me to go to the myeloma one, I didn’t want to go! I actually didn’t want much information about myeloma. Anytime you google it, it’s very depressing. Especially seven years ago when I was diagnosed. After a friend really urged me to go, I went just to appease her, and it was great. At the support group I attend, everyone in the room looks perfectly healthy. You can’t tell which people have it and which are the spouses. Most of them are older than I am because most people with myeloma are older. What I learned from that meeting is that people can be very sick--they can have pneumonia, go to the ER, and be near death--and then next month they are back in the meeting, and they are perfectly fine. This happens all the time. I learned that when something awful happens, don’t panic. With myeloma, things are going to happen. When your treatment fails, they will have something else for you. I think myeloma is such a unique kind of cancer because we have the most amazing research going on, and we have things like All4Cure, where people are really trying to bring the data together and let people learn from each other. It is such a rare disease, and there are so many treatments and so many cytogenetic differences. To be able to look at someone else who kind of resembles me, and see what has worked for them, is really helpful. Being part of things like this makes me feel really good because we’re not only helping ourselves, we’re helping everybody else, too.

I’ve always been a very active person, so I think people are surprised to find out that I have myeloma. I get up at three or four in the morning which, unfortunately, is one of the things that myeloma does, but I love all of that quiet time. By the time the sun comes up, I’m ready to go. I take a relaxing bike ride with my little dog and listen to a podcast or some music. If it’s summer, I swim in the pool afterward. I’m also an absolute addict of a game called Pickleball. It is the best, and before COVID I literally played that almost every day. We recently got a ping pong table, so that’s my substitute for Pickleball, since I can’t play right now. After that, I come home to my husband, and we play this game called Rummikub. We have a way of doing it, it’s like speed Rummikub where we play it with just two people, and we go really fast. We play about five games a day. Later, I finally take a bath in the middle of the day, and then I work in the afternoon. That’s my life; it’s pretty darn fun! I think that people with myeloma generally are not very active. Many are in pain, and I’m very lucky I’m not in pain. I do have a lot of neuropathy; it’s a side effect of medication, which is why I don’t sleep very well. I guess people might say that it’s unusual to be as active as I am. I have more energy than people much younger than I am! I wouldn’t call myself hyperactive, but I just really feel great. I tell myself, I’m healed, but my numbers just don’t know it yet.