"A Day in the Life" podcast is brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience for those in the myeloma community and beyond. Today, we are talking to Jill Shook, who is actively involved with the IMF and whose spouse, Jerry, has multiple myeloma. First off, it's nice to meet you today, Jill.
Virtually, at least I've heard. Nice to meet you as well. I've heard a lot of great things about you from IBM's Vice President of Support Groups, Robin Tuohy, whom I'm sure you know well. This is the first time on our podcast that we've interviewed a care partner separately from their spouse or partner that they care for. So, a little bit of a disclaimer.
You may have heard the term "care partner" being used, and it's something that the IMF recently started using instead of "caregiver" because we believe that a care partner is a patient's team. Care partners, as we say, walk along the myeloma journey with their loved ones and help them live well with myeloma. Let me share a bit about my history since I'm new to you at the IMF. Along with my older sister, we were care partners to our dear mother, who lived with myeloma for about four years.
So, I have some insight into what it's like to be a care partner. However, I've never been one to a spouse. So, that's going to be new information for me as well, and probably for some of our listeners who are also new to this concept. My first question for you is, what do you think of the term "care partner," and do you feel that you were a care partner to your husband, Jerry? And why?
Moving from caregiver to care partner? Because for us, Jerry and I have approached this as partners, as a team. Even though he is the one with myeloma, it still affects me and the rest of our family. We are partners throughout this entire journey. So, I really like the word "partner."
Excellent. If you could take me through the path that both of you went through when you learned of Jerry's diagnosis.
It started in 2011 with some back pain. He went through some misdiagnoses. He was actually on a trip to San Diego, and they sent him to the infirmary. He works for the Portsmouth Naval Yard, and he was going for some training, but his back was really bothering him, and they treated it as a severe strain. He stayed there for two weeks.
When he got back, the pain was excruciating. He still continued to work, and it took about a month or so before we finally got the correct diagnosis. I noticed his doctor was starting to see through lab work that his creatinine levels were elevated, and he was showing signs of something abnormal. So eventually, around December, after a visit with a spine doctor, we could see the three compressions.
The doctor said, "Well, there are some holes, I would say. And, as a woman, I would say you probably have osteoporosis, but you're not. And you're fairly healthy." So he performed a couple of procedures on the three compressed vertebrae. And at that point, based on that and other markers, came the diagnosis of multiple myeloma. Jerry and I looked at each other and said, "What's multiple myeloma? I've never heard of it." So we did a little bit of online research, which probably stayed there because you never know if you're getting reliable information.
Eventually, once we started treatment, we were recommended to turn to the IMF as a good resource for information, which has proven to be very, very helpful. Jerry went through several rounds of REVLIMID, Dexamethasone, and Velcade for about a year. He was also on the list for the stem cell transplant process, and he had about a six-year response with just Dexamethasone in very low amounts for maintenance. But then his numbers started to rise again.
We started looking at the free light chain, and the decision was made to add some Dexamethasone to the treatment. That started to ramp up. Then he was switched to Pomalyst and Darzalex IV. That lasted for about three and a half years. And about a year and a half ago, his numbers started to increase rapidly, and they wanted to take him off Darzalex and try Pomalyst, but it hadn't been approved yet.
We went through all those hoops, and our facility was able to secure a grant to cover the costs. That lasted for about six or six and a half months. Then the numbers started to rise again, and they put him on another therapy called Sellinexor. That lasted about a month and a half. When that was no longer effective, our oncologist at Dana-Farber decided to put him on the CAR-T list.
He received Blenrep, along with the usual Dex, as a bridging therapy before starting CAR-T in August. He underwent the CAR-T treatment last September and is now being monitored for his blood counts. The numbers were very high last year, over 3500, but now they're around 100. CAR-T has been amazing. There were a lot of changes, and it was a bit scary, but thanks to the valuable information, our incredible oncology team, and the support from friends and family, we were able to get through it.
Looking back, it's incredible to realize how involved it was. Sometimes you have to step back and say, "Wow, I can't believe we went through all that."
Now, going back to when he was first diagnosed, what year was that?
It was in 2011 when we started noticing symptoms. He received the official diagnosis in December 2011, but he was showing symptoms as early as late August or early September. It took a while for it to be recognized.
And can you recall how it felt for you to learn about his diagnosis? We often talk about the five stages of grief: denial, anger, bargaining, depression, and acceptance. Did you experience a similar process as a care partner, trying to come to terms with his illness? Can you share any insights about that?
According to Jerry, he said, "Well, this is the hand we were dealt. Let's play the best we can." His attitude was not about feeling sorry for himself. He decided to educate himself about the disease and find out what we could do about it, and then plan accordingly. I think the stage of grief that we mostly went through was the bargaining stage, where we had to accept that this was our new normal and figure out what changes we needed to make.
What can we still do and how can we move forward, knowing that the landscape is changing? We'll adapt and make the best of what we're given. During different treatments, Jerry has experienced extreme fatigue, so activities like hiking and traveling were put on hold. It was a game changer. However, having gone through the stem cell process before, we already knew how to maintain a strong support system.
Exactly. I see you have many family pictures behind you. How did you communicate the diagnosis to the children, friends, and relatives when you went through this life change?
Well, we have a blended family, so we have five adult boys that we share but are not biologically related. I have two biological sons, and Jerry has two biological sons as well. We also have a foster son. We told them in small groups. Initially, we informed my three kids because of proximity, and then we found ways to communicate with Jerry's kids, although it was a bit challenging to get them all together.
We explained what myeloma was, what the treatment would look like, and assured them that we were in great hands with our oncology team. We kept them updated and let them know that if we needed help or assistance with anything, we would reach out to them. They have been absolutely wonderful.
During the COVID-19 pandemic, one of our grandsons lived with us part-time. They were very aware and cautious, making sure that if he had any respiratory illnesses or viruses, they would take care of him to prevent Jerry or me from getting infected. They have been supportive and a little concerned. We also advised Jerry's sons to undergo blood monitoring to check for any markers that might appear.
Were there any surprising reactions or adjustments you had to make in relationships with friends or relatives outside of the immediate family?
Everyone has been incredibly supportive. They took it in stride. Our church members sent prayers, and our close friends, including those from the Boy Scouts, have been involved and supportive. They always let us know that if we need anything, we should reach out to them. Being near Boston, where Dana-Farber is located, has been helpful for us, as it's not a long drive.
Right, right. Now, let's talk about going to appointments at Dana-Farber and meeting Jerry's healthcare team. How do you prepare for those appointments, what is the meeting like, and what do you typically do afterwards?
In the week leading up to any appointment, we are aware that Jerry's numbers are changing, so we take notes and write down any questions that come to mind. Whether we're watching TV or checking emails, if something pops up, we jot it down. Sometimes we end up with different questions, so we write them both down.
We make sure our calendar is clear and that the car has enough gas. We are fortunate that most of Jerry's infusions have taken place in a facility just 10 minutes away from us. So we have the convenience of proximity. However, when preparing for the stem cell treatment, we would have follow-ups every six months to a year, depending on the ongoing treatment. After CAR-T, there were many appointments both before and after the procedure, resulting in weekly visits to Dana-Farber. In one particular week, we had ten appointments, two of which were at Dana-Farber, while the rest were local appointments. Fortunately, our family was there to support us during that demanding week, as we also had our grandkids with us for vacation. It was challenging, but we managed to pull it all together.
Speaking of challenges, if you're comfortable sharing, have you faced any financial, legal, or social challenges while living with Jerry and his myeloma?
No, we've been very fortunate. Jerry is retired from the Navy and has TRICARE, which, combined with Medicare or previously Blue Cross Blue Shield, has resulted in minimal out-of-pocket expenses for his treatments. Of course, there are costs associated with driving to Boston, such as meals, but overall, we've had minimal financial burden.
During the stem cell and CAR-T treatments, we were incredibly fortunate to receive support from various organizations and friends. Fisher House, an organization supporting veterans seeking medical care, covered our hotel expenses for both treatments. We were within walking distance of the hospital during the CAR-T treatment, and they even covered the parking costs for the stem cell treatment. A friend generously provided us with hotel reward points, and they visited us on the day we had to switch hotels, driving us to the new location. Additionally, Dana-Farber has programs for hospital stays, and Women's Aid of New Hampshire, an organization in our home state, covered our hotel expenses throughout. We have truly been blessed.
Coordinating all of these different organizations must have been quite a task. How has it been to manage and coordinate all of this support?
The hospital, Dana-Farber, took care of a lot of the coordination for us. I simply made a phone call to Fisher House, provided them with the necessary information, and they handled the rest. The hotel arrangements were facilitated by the social worker at Dana-Farber. They were instrumental in helping us with these logistics. So we didn't have to personally handle much of it, aside from coordinating shuttle services, as both hotels had shuttles to the hospitals. We were incredibly fortunate in this regard. However, I've heard that others haven't been as fortunate and haven't had access to these benefits. If we had to navigate it all on our own, it would have been as challenging as preparing for CAR-T while having different grandchildren staying with us. It would have been very difficult.
That's interesting. Now let's change the direction a bit. You've probably come across this quote before from Yelak Biru, the president and CEO of the International Myeloma Foundation, who is also a 27-year myeloma survivor. He often says that patients must learn to live well with myeloma, not for myeloma. So how do you find enjoyment in life outside of appointments and treatments? Even with Jerry being on CAR-T and having a relatively low maintenance regimen, how do you cope with the knowledge that he has to undergo these treatments while still trying to lead a new normal life?
The first thing we did was cut back on some of our volunteer activities. We were heavily involved with the Boy Scouts of America, both with our boys and in leadership roles. We decided to step back from those responsibilities. Although we miss it, we knew it was the right decision.
We always make sure to do something fun for ourselves, usually by getting together with friends. We love to travel and try to do as much of it as possible. Hiking and snowshoeing are activities we enjoy, so we make time for them. Gardening is another interest of ours, and we keep up with it.
Jerry actually works part-time during the summers at a greenhouse, which gives him a sense of contribution to the community. It's his retirement job, and it's important for us to feel like we're still giving back. Whenever his treatment changes, we make it a point to go hiking, taking a three or four-day trip to explore new places, such as cascades and woodlands. Staying active is crucial for us.
We also try to stay involved with family activities, attending sports events and organizing gatherings. For Easter, we couldn't have the family in the house due to COVID, but we did a drive-by drop-off of gifts, ensuring we maintained a safe distance while interacting with the kids. My husband is fluent in sign language because his two sons are deaf, so we also communicate using sign language. Staying connected with people is essential for healing and keeping us motivated.
Being part of the Manchester support group has been an incredible journey and source of support. Additionally, we believe in giving back to express gratitude for the help we received when we were in need.
Absolutely, and it's clear that you contribute greatly to your community and the myeloma community. As you mentioned, you are a leader of the Manchester, New Hampshire support group. How did you become involved with this IMF-facilitated support group, and what motivates you to be a support group leader?
Jerry discovered the support group on the IMF website. We decided to attend since Manchester is about 45 to 50 minutes away, sometimes even an hour due to traffic. We found out that another member of the group had a mutual friend, so we invited her to join us to learn about myeloma since she now had two friends with the condition. Initially, we participated as attendees since we were still working and could only dedicate one night a week to the group.
About three years ago, just before COVID, I offered to help out because I had a good grasp of technology. The other three co-leaders were not as knowledgeable in this area. When the pandemic hit, I was able to run Zoom meetings and keep the group going. Currently, one of the original leaders is no longer involved due to her husband's passing, although we stay in touch with her. The other co-leader, who is a myeloma patient herself, decided to step back as she retired and now has a busy schedule and grandsons to care for.
Losing members, especially as leaders, can be emotionally challenging. We have experienced three losses within the past two years, two from myeloma and one from another type of cancer called Merkel cell carcinoma. It has been tough because we had become close friends. We have a core group that has been together for several years. Robyn, from the IMF, joined our call and helped us through the grieving process. We have conducted short memorials and attend funerals to show support. We try to stay in touch with members who may have dropped out due to the death of a loved one, but we respect their wishes regarding their involvement with the group.
I understand. What motivates you to give back to the myeloma community as much as you do?
I have always been in leadership roles. As a classroom teacher, I've had to be in charge of 20 young elementary kids at any given time. I've also held leadership positions with the Scouts and in our church. So, becoming a support group leader was a natural progression. When the other leaders needed to step back, I was the most experienced leader. Luckily, we recently gained a new co-leader, Diana Miller, who has been amazing. She takes care of email communication and ensures everyone is informed about upcoming webinars. I typically work with Robyn and the IMF team to invite presenters and plan our meetings. Running the meetings is not an issue for me. Jerry also supports our desire to give back as a way of expressing gratitude for the support we received during the challenging times of our journey.
That concludes the interview questions I had for you today. I want to express my gratitude for being a guest on this podcast. Is there anything else you would like to share with the listeners or viewers that I didn't ask about?
My advice to people is to try to find the silver lining, take one step at a time, and celebrate the victories along the journey. Remember, it is a journey, so keep moving forward and rely on others when you're ready and in need, as there are people out there who can support you. The IMF has been a tremendous source of support for us, and all we need to do is reach out to someone, and they are there for us.
Well, all we have to do is call you because Thank you so much, Jill, for all you do for the IMF, for the support group and for being a guest today on this podcast.
It has been an honor to be able to share our story and we look forward to looking at some other stories down the road.
Excellent. So thank you to all our listeners. You've been listening to A Day in the Life podcast brought to you by the International Myeloma Foundation. To learn more about the IMF in myeloma, visit us at Myeloma talk.