Patient needs define and drive us

I try and look at life like, you know, this is my journey and for the most part I'm OK, but sometimes the tears just flow. So, when I first went to the dentist and had to write it out, it just truly hit me because it was the first time I had to put it on paper. I knew that I was going to have to tell them that I had cancer, but to actually sit there and fill out the paperwork is two different things. The first impressions that I got was that it wasn't a big deal. I had gone to a baby shower and all of a sudden, I noticed that I had spots on my hands. The dermatologist, she felt that it could be controlled by using steroids. The creams did seem to tame down the rash. I was still a little concerned, because I didn't feel like myself. I knew that something was going on in my body. I just didn't know what it was. So, I continued to go to the doctor. She sent me to a rheumatologist and then he said, well, the good news is you don't have seizure or or lupus.  The bad thing is, is I can't tell you what you have.

It was especially frustrating because I had seen five doctors by this point with no answers whatsoever. My physical was in November of 2023. Now my white blood cell count is high.After that she finally referred me to the to an oncologist. So, I went to an oncologist. It was December 19th. I was diagnosed with cutaneous T cell lymphoma, Cesare syndrome. Cesare syndrome, a rare form of CTCL, often appears as a red, itchy rash that can resemble sunburn. In some patients, the cancerous T cells can spread to other parts of the body, including lymph nodes and other organs. Because of its rarity, unique presentation, and nature, Cesare syndrome patients can benefit from a multidisciplinary care team, including specialist oncologists. I finally saw my new oncologist and it was like a breath of fresh air. She made me feel at home, made me feel comfortable. I actually called a friend who had been through cancer and she said, Linda, you got to live life.

And so that's what I decided to do, get out and live life through this journey. I would not have been able to make it without my husband. I would share with him everything that was going on. He sat with me looking at the notes, looking at the trends. He's my rock. When you're going through something, to be with people who understand what you're going through is super important because this is uncharted territories.

We don't know what we're going through, just as it was uncharted when I first started on this journey. I'm 69, I've lived a lot of years, but I still want to see my granddaughter get married. I still want to spend time with my family. And that's the one thing we have to remember in life is that there are wonderful people out there. There are good doctors out there, someone who's going to fight for you, someone who's going to answer the questions that you have. And don't be afraid to ask questions. You have to be your own advocate. You have to stand up for yourself.
If you know that there's something wrong, ask the questions because this is your life and only you can live your life and only you can advocate for yourself and only you can make sure that you get the answers that you need to be comfortable with what you're going through. There are certain things that stand out in my mind. We don't grow on the mountaintops, we grow in the valleys. When we go through those valleys is when we learn and we grow. And I have to remember that life is short and that we have so much to be thankful for in those hard times.

I got a call from her. She said the doctor told me I'm going to have Parkinson's disease. And my reaction on the phone was ha, ha, ha. What? What do you mean? You know, we have all heard of that before. It's an old man's disease, not the 45 year old mother of three boys. So it went from shock initially to this can't be right, this can't be right. You know, they don't, they don't know that for sure. I look at you, I can't see anything. I had an injury, or at least I thought I had an injury, and I went to the doctor's and one thing led to another and I ended up at a neurosurgeon, the doctor doing the conduction test that I don't normally do this, but I think you might have Parkinson's.

Parkinson's disease is a progressive nervous system disorder that affects movement. Symptoms typically start gradually in people after age 60 and worsen over time. Young onset Parkinson's, although less spoken about, effects those under 50. Behind every diagnosis is a person and a family trying to navigate everyday life while grappling with a future they did not anticipate. Every individual with Parkinson's has a distinct journey, each with its own story to tell. You grieve the life you thought you were going to have, because you don't have it. It's hard to accept something when everybody's looking at you go there's no way. There's no way. My biggest fear was I was not going to be able to be the mom wife that I wanted to be. I think it was hard for Mike to watch me drop weight and just going through the motions and that, you know, like especially Ryan was a senior in high school and I went to everything. I wasn't really there.  Part of the challenge that we had was how do we manage this particular situation with our children and what do we share with them and how much do we share with them? We didn't really talk about it as a family in that between.

I was aware that something weird was going on, but I wasn't quite sure what that thing was. So really early on, we, we didn't necessarily discuss the diagnosis impact on the family or what it might mean. It's easy to just try to pretend that it's business as usual and that you're just carrying on with your normal life. And the way I kind of explain it is there was dinner and food on the table, but the person who cooked it wasn't there. The problem was it was so pervasive within the life of our family that that kind of constituted stopping caring about anything family oriented or family related. I think it mostly just comes from that confusion, like what is this? What does this mean for our family? There's the Lori that's the public glory and then there's a Lori at home that it feels like she's walking with a walker, but there's no walker there. I'm trying to shield them and they're trying to shield me.

But yes, my life was blown up and they're expected to help me, but their lives were blown up and this was not my disease. This was my family's disease. You’re a mom, you’re a wife. I knew I had to get it together. I didn't have a choice, as hard as it was. And you know, God love him. He, you know, we were talking and he said, you know, we've got to put the pity party hats away. We have to move on. But I also think that you reached acceptance sooner than I did.  But then, like she said, well, we got a family. We got three boys. We still need to get through our lives.
But that doesn't happen immediately. You get the acceptance, but then what's the next step? You know, you need to figure out how to get it together to continue to be that mother to that family. And that didn't take some time as that sort of confusion was starting to subside. I think that we really were able to watch my dad and how he sort of addressed the situation. There are a lot of different ways that I think you can respond to a challenge. And he chose to do it through Love Support as a care partnership. And we got to see that. And you know, for me, that really helped exercise that empathetic muscle. Maybe it was because we were able to to get through this or whatever. Gradually, she started being more positive about things, Realize, hey, three months have come and gone and I'm not shaking. I'm not exhibiting those symptoms. I'm not getting to that point. She started turning the corner and saying, well, what can I do that's positive? I mean, she started looking into things and looking into exercise. She saw a doctor. She just recommended dancing, you know, so she comes to me — hey, maybe we should take dance lessons. What? Yeah, me.  OK, honey, because I love you, we'll go dancing.

So we found a local instructor. It's 9:00 every Saturday morning. It became like a date for us to go and do this, just the two of us not in the group, but you know, with this person. It became like a date for us to go and do this, just the two of us not in the group, but you know, with this person. And we eventually liked it. I honestly move differently and feel differently when when I'm moving to music. I don't feel like I have Parkinson’s. It's not important how you dance. It's that you dance. As I got older and understood Parkinson's more, I was able to come back a little bit and see it for what it was, which was doing the best that they could with what they had at the time. I brag about my mom in a lot of ways that other people don't.

The way she's impacted people positively, the changes she's made in herself, though, the control she has dictated over her own life. It is really something I strive for because I mean, there are times where I feel completely out of control and chaotic and I, I can only imagine how she feels. I just think there are so many ways to respond to a challenging situation. And the way that she chose to do it as an advocate, helping other people is, is, I think inspirational is really the word for it. You know, I'm, I'm proud of her really, to say the truth, I, I'm shocked a little bit because I, I sometimes think I spread myself too thin and like, did I, do I neglect them for the part of this community? They, I think they also see that that community is my, as a lifeline, just as they are.

It's just a different kind of lifeline. And that, that warms my heart because it, it's important. It's important that I stay active in the community and because this is bigger than just me. This is bigger than our family. And that's kind of why I think everybody agreed to do this, because we can't be the only family that has struggles. And I said that for why I write, if I can reach one mom who feels guilty because she couldn't make it to their child's Christmas play because they weren't feeling well, it's OK that that happens.

It happens. But you can't carry the guilt forever. You got to lose the guilt quilt. When I give a talk on Parkinson's, which I've done quite a few times, I pretty much say when, when I say Parkinson's disease, what do you think about? And usually the first answer is Michael J Fox and Muhammad Ali. I'm like, not me right? But I'm Parkinson's. Parkinson's is the mom, the dad, the daughter.

I think if you lose hope, you're in big trouble. I mean, I honestly think that that's one of the few things that you can control and can't be taken away from it. You have to balance your worry and your hope and find, find that fine line because, you know, do I hope for a cure to come out tomorrow and I get in line the next day? Yeah. Is that realistic? Maybe not, you know, But you have to kind of balance, make your realist, make your hope realistic, but don't lose it. And I will not lose hope.  I might lose hope in a situation, but I won't lose hope in myself. 

So I think 1st, it's very important to establish trust between the doctor and the patient. But then also, I do teach my patients that I can't achieve all the goals in in just one visit, especially initial visit, right? So sometimes patients come in with very long complicated history and they expect that or they hope that I can just fix everything, the ration, the itching and everything else just from the first visit. But I say that I also need time to learn them, to collect adequate history, to learn what worked and what didn't work before. I, I always recommend for my patients to keep a diary, a lifelong diary of their symptoms, the treatments and the response.

So I think this partnership in in trusting the physician in in the care instructions and following them can be very important and, and communication. So, she touched on some things that are absolutely essential, like following the doctor's directions. I know some people that have appointments, they cancel all the time and they're inconsistent with treatments and everything like that. So yeah, it's important for us to do our parts so that we can get the best out of our relationship with our doctor. If you're, you know, the doctor sees something that they can't address, if they refer you to someone, then chances are maybe they have rapport with that that person.

Being able to show your experience so that others don't feel so alone is is huge. Traditionally, when the medical textbooks, when we hear about these diseases, we hear the manifestation erythema, right, which is redness. Well, in darker skin colors, we do not see redness. We see skin darkening. And a lot of times it is thought to be due to inflammation or scarring or some irritation, while indeed it could be something else like continuous lymphoma. And then we have to learn how treated CTCL is going to look because in patients with lower skin pigmentation, the lesions may result completely. While in patients of color, you may have residual hyperpigmentation darkening that may stay for a very little time and maybe even forever.

And I think that, again, having that in the textbooks and then having that in patient's handout would be extremely helpful. That's a really great point. I think we have to look more deeply and broadly at everything across the board from the medical textbooks to the patient materials. Again, to your point, how it may manifest differently, how even if the disease is well managed, there may be residual what does it look like on darker color skin showing photographs. Because I think when we when we show even just your basic photographs with of patients or with the disease is always shown on white skin and that, you know, isn't always the case. Absolutely. And you know, I think that it's important for the educational establishments to make sure that the young physicians that nurse practitioner trainees, physicians assistant nursing staff, dual rotations have rotations in the areas where there is high representations of people of color where they can get experience.

And I think that maybe the best language really is sometimes listening. So I think that learning from these patients, actively listening, following them, paying attention and trusting their symptom expression and the expression of symptom severity is very important.