The Caregiver Cup Podcast

Caregiver Strong: Cathy’s Personal Updates & Advocacy Insights

• Cathy VandenHeuvel • Episode 251

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In this episode, I’m pulling back the curtain and sharing some personal updates on Denis’ treatment journey—including the challenges, frustrations, and lessons learned along the way. From navigating the maze of health insurance approvals to advocating for timely care, I’m diving into the reality of what it takes to ensure our loved ones get the treatment they need. If you’ve ever felt stuck in red tape or frustrated by delays, this episode is for you. Tune in for real talk, advocacy insights, and a reminder that persistence is our greatest tool as caregivers. 💛

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Speaker 1:

Well, hello, my friend, and welcome to the Caregiver Cup podcast. I thought I would just jump in with an update. I know I said that I was taking a break and I've decided I'm just going to jump in and give you updates or lessons learned or insights when I can during my challenging season. So, first of all, I'm doing well and Dennis's treatments are going as planned. He had his fifth chemotherapy infusion cycle just last week with the typical side effects and it's kind of funny because typical is not fun, but he's making it through. He had extreme fatigue, nausea, but it was manageable with his nausea. Medications and food and stuff aren't tasting right in his digestion. Our digestive system isn't doing well, but I think we're just kind of blessed, and I'm blessed to actually have a guy that's really tough. That's really tough the doctor that we go to. Dr Goddam is his name and he's really good, very professional, very, very scientific and kind of just really comes in and he's all business and every so often he continues to surprise me because he said to Dennis he goes, you're such a tough guy, and I take that as a true compliment because he recognizes that A typical person, I think, in me included. As a typical person, I would be in a fetal position just struggling to make it go a fetal position just struggling to make it go, and Dennis has unbelievable strength and pain tolerance. But there was also a bit of admin work and advocating over the last few weeks and I want to share with you the chemo pill scenario today because I know you, as a caregiver, experience these admin struggles and frustrations and advocating challenges all the time. So, with this being said, this prompted me to dust off my podcast microphone, which it's only been a couple weeks but it feels like it's been forever, and I miss you so very much. And I want to share the struggles and challenges that both you and I, as caregivers, face and our loved ones face when it comes to advocating or not getting lost in the maze of the health insurance and the administration and the doctor's notes and getting treatment on a daily basis. Especially, I'm referring to the cancer side, but I also can go ahead and refer to my past experiences with my mom and dad's care as well. If you don't advocate, if you don't stay on top of things, you kind of get lost in the shuffle. So the doctor explained the chemotherapy pill back on.

Speaker 1:

I think it was January 24th, we had his follow-up visit and he went through what the chemotherapy pill, when he took it twice a day, could do. And they're hoping through consulting with his freighter doctor and our Green Bay doctor. They both feel that this is the best plan. In addition to having his infusion chemotherapy, he needs to go ahead and go on chemotherapy pills morning and at night, so twice a day for his CLL, which is non-Hodgkin's lymphoma. It's the I think it's chronic lymphatic leukemia or lymphoma that attacks his and the non-Hodgkin's that he has. Cll is not there's no cure for it, but the treatments are, or the there is medication to go ahead and keep it under control. So he went through that and talked about how it would take care of that. But he also went through the symptoms and the side effects and the risks involved as well, and so there there's definitely side effects which he's experienced now and there are risks involved and so we have to watch for bleeding and certain types of things that the pill is known for as well, and both Dennis and the doctor and I all felt optimistic that he could handle it because Dennis is overall healthy. His pain tolerance and his tolerance to going ahead and making through. It is very positive and, being in his early 60s, I think that we all felt that it was a good decision.

Speaker 1:

So in order to go ahead and take any type of chemotherapy, you have to sign an authorization, more or less. Any type of chemotherapy, you have to sign an authorization, more or less signing your life away, saying that you agree to taking these toxins and I'm laughing, but not laughing into your system to go ahead and fight the cancer. So he signed that on January 24th. The reason I'm telling you this is because I want to share this chemo story with you. So the nurses then came in afterwards and talked about the process and their nurses says now we'll take this authorization that Dennis had signed, give it to our pre-authorization team, who is going to file it with the insurance company, and then, once the insurance company approves it, then they'll go ahead and start the pharmacy process, and this should take about seven to 10 days, and this will then help us, because the pharmacy that we have to use is not a typical corner pharmacy. It has to be made outside of the typical pharmacy drugs, and then this drug gets shipped directly to our home and it will be mailed to us overnight and all that kind of stuff. So she explained that process. So seven to 10 days In the interim we had to attend another chemotherapy training.

Speaker 1:

We did this at the very beginning with his infusion therapy. But Dennis needed to know how to handle the pills. I had to learn, if I had to give him the pills, that I had to wear gloves because of the toxins that are in the chemotherapy pills. And we had to make sure that we stored them in a cool, dark place and they were away from anybody or anything that could get a hold of the drugs, because they definitely are harmful. And we also had to talk about the precautions that we had to use. And if you've had a person with cancer that's getting treatments, you know that they have to have their own separate bathroom. Or if they didn't have a separate bathroom, you have to flush it, flush the toilet twice. You had to clean up. You can't leave any fluids laying around for anybody else to be exposed to. So we went through all of that At that time too.

Speaker 1:

They talked about that. It was about what was it? I'm just counting it was about six days and they said that they saw the note in the system saying that the preauthorization team had it, but they haven't seen anything else come through. So they reviewed the process again with us. Haven't seen anything else come through, so they reviewed the process again with us.

Speaker 1:

Well, there was this gap then where nobody contacted us and we didn't hear anything. And his next appointment was February 5th. Here's just a little note where I dropped the ball here that I felt like now I've learned. But we didn't hear anything and we had the appointment on February 5th. And so we arrived for his appointment. And when he comes in for his appointment on February 5th which is what? 10 days now since we signed the preauthorization, or he signed that authorization for chemo pills, authorization for chemo pills when he arrived for his labs and he went into the labs and he knows everybody at the clinic now and the nurse that came in said how are you doing, dennis? And Dennis goes. I'm doing good, but I'm frustrated. I haven't received my chemotherapy pills or any word from it. Nobody said anything.

Speaker 1:

Well, there's always a silver lining, because the technician that took Dennis, drew Dennis's blood, said I used to work in the pre-authorization team for this hospital and this oncology department. So she wrote down the number and she goes. It should not take that long. Usually the insurance companies tell you in one or two days and then there's a little bit of work behind the scenes that the reauthorization does and they pass it off. So she goes. I would call, here's their direct line.

Speaker 1:

And so Dennis came out of the lab and then we had a check-in with the doctor's office, which is one floor up, and we had a long wait anyway because they have to go ahead and process all his lab work before the doctor. And so I said to Dennis I said why don't you make the call now? And so he made the call and what was really funny is he called the pre-authorization team and they said oh yeah, you were seen. He was seen on the 24th. The pre-authorization team approved it or the insurance company approved it on the 27th, so from a Friday to a Monday it was approved, but nobody has touched it since then. So more or less it got lost in the worldwide internet process or whatever it is that the office there has.

Speaker 1:

And Dennis said well, I need these, and both of my doctors from Friedert and this Green Bay doctor wanted him to be on these chemo pills before this appointment. And so Dennis, you know, told him his concerns and told him that. And he told him he was upset, he needed that taken care of ASAP. And the girl said she's going to get on top of it and flag it as priority today. So we hung up the phone, we were talking, we were kind of frustrated, talking in the waiting room and didn't our nurse navigator walk by? And again, there's a silver lining in everything and she walked by and so we flagged her down, explained the whole situation and said that something is wrong here. Somebody dropped the ball. My husband said they put the paper on the bottom of the pile. And I said to my husband they don't have paper anymore, everything's in the system. But somebody probably had it in their queue and either clicked buy it or it didn't get put into a queue I have no idea it or it did get put into a queue, I have no idea. And so, to make a long story short, through our concerns we told the nurse navigator, we told the doctor that day the doctor sent us down, or Dennis down, to start his chemotherapy. Within probably a half hour that we were sitting down in the chemotherapy area where he was getting his infusion. The nurse navigator came down and said everything's in a go. We have everything working. We've already called the pharmacy. The pharmacy called us when we were there to confirm our address and we had everything sent to our home within 36 hours. So everything was a go and Dennis was able to go ahead and start those as soon as possible.

Speaker 1:

But I wanted to share with you as caregivers, challenges and struggles are inevitable. Changes and struggles are inevitable and they are also frustrating when you hold your loved one's care, their care to the highest expectations, and when things don't work out. It is so frustrating and I know you experience this too because you rush and you get yourself all prepared for it, like Dennis did when he had to sign that authorization form to go ahead and take the chemo pills and then nothing happens. In this situation, I think the biggest lesson I've learned is I trusted the process of seven to 10 days and assumed it would fall into place.

Speaker 1:

When I look back now at this situation and I wanted to share it with you if I could do it over again, I would have started a follow-up and put a follow-up alarm on my phone or a sticky on my calendar at seven days and said, okay, I haven't heard anything yet. What's the process, and if they said, well, we haven't heard back from the insurance company, I could have called the insurance company and or called the nurse navigator to check in on it, and then I should have followed up again in 10 days. And that's one of the things that I've learned from it, because, like I said, when Dennis called, it was approved in two business days and somehow the authorization wasn't finished and sent to the pharmacist and we were worried about all of the cost and stuff like that. When we talked to the pharmacist and the pre-authorization team, we even asked there was $100 copay for us and we had said is there any type of grant or incentives or any financial assistance that we could get? And they gave us the incentive and we were able to get it at zero cost, which was wonderful.

Speaker 1:

You know I forget how many patients, though, and complicated things are, and so I had to go ahead and talk myself through it and not do the blame game. But it's hard not to do the blame game because when you look at your loved one, they're the only one that's important to you when you walk into that clinic, but you see all of those other people, and so I think that I just had to just really learn that I had to go ahead and be their advocate too. I had to be part of that pre-authorization team and, you know, even ask for the phone number so I could go ahead and follow up if I didn't hear anything in seven days. And so I am not going to be afraid to go ahead and ask okay, you said seven to 10 days. If I don't hear anything in those seven days, who can I call to follow up, to check on it, because this is important to my loved one, and if there's anything that I can do from my end, I can make some calls as well. And if there's anything that I can do for my end, I can make some calls as well. And so I'm just going to put that in my back pocket. I journaled about it and I wanted to share that with you today in this podcast episode. So well, my friend, that's the update that I have for now.

Speaker 1:

Dennis had his follow-up visit this past on the 14th, on Valentine's Day. That was our lovely date day. He is doing okay. He's struggling with low platelets, low red blood cells, low hemoglobin. He's losing a lot of weight but, like I said, the doctor called him a tough guy and what we really have is we have one more cycle to go and that will be I'm just looking at my calendar at the end of this month. So he'll have another cycle and all the rest of the chemotherapy pills and we'll follow through with all of his treatment plans in March, but we're looking at, sometime in April, a stem cell transplant, if he can stay healthy.

Speaker 1:

Even though we as caregivers had a few speed bumps for me and Dennis, we kept advocating and pushing, and that's exactly how we keep our loved ones' care on track, and I want you to remember that too.

Speaker 1:

You and I know it's not easy to juggle phone calls and paperwork and all the back and forth, but staying persistent can make a world of a difference for your loved ones and for your sanity as well.

Speaker 1:

As you head back to your day, my friend, I want to remind you that you are strong, capable and absolutely entitled to ask the tough questions and follow up on those authorizations and appointments.

Speaker 1:

Sure, the process isn't always smooth, but we have to keep pressing forward and tapping into our determination and the reason we're doing that advocating we can get our loved ones the care that they deserve when we go ahead and hold them to the accountability as well, and I don't even think about it as like pulling teeth or fighting with them. I just think it's just a partner going ahead with the doctor's office, with the insurance company, and we're working together to go ahead and juggle all of these pieces. So thank you for being here with me and, like I said, I missed you so much and I hope, by sharing these lessons, it'll help you. It means so much to know we're walking this path side by side and until next time which I hope again is the next week or as soon as I can, I want you to keep your head up, keep advocating and remember you're doing incredible work, my friend, and I'm right here cheering you on. So talk to you again real soon. Bye for now.