speaker-1 (00:00)
I'm sitting at my kitchen table with a cup of coffee. And I cannot grip that coffee cup to save my life. And my first thought was panic. Actually the first thought wasn't thought at all. It was just panic.
speaker-0 (00:18)
Welcome back to the Harness Your Health podcast. I am here with another special guest today, Lisa Nicholson. Lisa, thank you for being here.
speaker-1 (00:27)
thank you, Charis It's good to be here.
speaker-0 (00:30)
so Lisa is another contributing author in the Integrative Bodies book. I am doing a series on the podcast. If you don't know what I'm talking about, go back to the beginning wherein I interviewed Jess Veryl, who is the creator of this book. And she's the one that brought us all together with our differing expertise to make this collaborative book, which has just been so fun for me to interview everyone and also.
to get to know people a little bit better. So thank you for being here and I can't wait to dive into who you are and what you do. So why don't you tell us a little bit about that?
speaker-1 (01:06)
Well, my gosh, where to start? So I I'm a licensed acupuncturist. My practice is in San Diego, California. And I've been in that practice in that location for 26 years. Wow. So for I think at this point I've been look in acupuncture longer than anything else I've ever done. was a case manager before that. outside of work, I
Have been an ultra distance cyclist, I have been a breast cancer patient, I love to cook, I do photography. There's like I I've got my fingers in ten million different things and life would be boring without any of them.
speaker-0 (01:46)
Absolutely. That's so fun. It's so fun to hear everyone's background. And I think most of the people who are contributing to this book, this is not like their first rodeo, if you will. they have a lot of life experience, a lot of different professional experience. And obviously, what you do, I believe very much in acupuncture, have used acupuncture for myself multiple different times in my life for my son, too, when he was quite young. He was
I think seven or eight. I meant to tell you this story before we started recording, but it was just really life changing for him too. So I took me a little bit to wrap my nurse conventional medicine brain around acupuncture and what it is, but your story about being a cancer patient, what you're doing now, which we're gonna get into, is very close to my heart because most people know.
I am an oncology nurse. I'm not practicing right now, but I haven't closed that door completely. I love taking care of cancer patients. I love helping people who are on this journey. So I can't wait to dive into this a little bit more. Why don't we maybe start with? I think most people have heard of acupuncture, but maybe don't understand exactly what it is. Do you want to explain that?
speaker-1 (03:03)
Sure. So acupuncture is actually the physical medicine piece of the primary medicine from most of Asia prior to Asian cultures being opened up to the Western world. And so for physical medicine, the primary tool are needles. And what gets used in the states for the most part are very, very, very tiny needles. You can put about 10 of them into one hypodermic syringe.
Not too much thicker than a human hair. And what we're doing with those needles is inserting them into very, very specific locations that then send very specific signals through the connective tissue, through the nervous system, trigger different immune system responses. So it tends to get described really poetically because it
Was it's a system that was created in ancient China, which was a very, very different culture. But those Chinese doctors who created the system were very, very good at observing physiology. And human bodies have not changed dramatically since the Han Dynasty. So they described the same thing that modern medicine is describing, but they described it in the language of their time without the benefit of having a microscope to.
see the underlying microstructures and pathogens and all of the rest of that. So they created this brilliant system of physical medicine. And then the internal medicine is with Chinese herbal medicine. And in California, when you go through acupuncture school, it's a minimum of a four-year master's degree. And we study all of the
Western anatomy, physiology, clinical lab interpretation, pathology, but then we also study Chinese medicine theory, acupuncture techniques, Chinese medical massage techniques, and a whole lot of herbal medicine with individual herbs and formulations and then customization of that. So it's a huge, huge body of information that we pick up.
speaker-0 (05:20)
Absolutely. So I love how you explain that. I don't think I've ever really heard it explained that way before because I remember my own acupuncturist when I'm sitting there in an acupuncture session, and I'm trying to like I said, wrap my nurse brain around what this is even doing. And he's saying to me, Well, Carrius, if you went to China and you were in the hospital, you would have acupuncture every day, probably multiple times a day. And I'm like, really?
When we were talking before we started recording, we were talking a lot about cancer patients and cancer treatment and things like that. And so you can have acupuncture for many differing things. In the book, in your chapter, you talk about supporting your nervous system, supporting your immune system, things like that. How would a person how would that start if a person let's say it was like,
Had a lot of stress or things that they couldn't control necessarily, outside stressors, family members ill, or maybe passing of loved one or something like that. And you were gonna help someone to support their nervous system, which is the best word that I love to use, because that's really what it is, right? Is supporting. So, how does that look like in an acupuncture setting? So, like
Am I coming to you as an acupuncturist and I'm telling you I have all this stress? And then what where are you taking that?
speaker-1 (06:48)
So in the first appointment, we sit down and we talk about what's bringing you in, what you're hoping to accomplish from coming in for treatment. We talk about your medical history. Some people will immediately jump to, I am much more in the emotional realm. I'm so stressed out. I don't want to be taking anxiety meds or my meds aren't working anymore. So oftentimes it's the patient who segues into that realm.
And in Chinese medicine, it's an observational medicine. So a lot of my diagnostic process is just watching what's going on during the interview. How what's the sound and quality of your voice? Are you breathing deeply or are you breathing shallowly? Are you sweating, but my room is 65 degrees? all of those kinds of things. And I'm kind of
jotting down notes in the corner about what I'm observing. And sympathetic nervous system hyperactivation tends to have really specific things that are glaring when you when you're looking for them. And so if I'm observing those kinds of things and a patient is telling me that they're really stressed or they're struggling with anxiety, that's going to guide my point selection to points that are
In in Chinese medicine speak, it would be calming the spirit. If we translate that into allopathic language, what we're doing is we're probably influencing the vagus nerve and we're having an impact on sympathetic parasympathetic balance. We can't be in fight or flight and rest and digest at the same time. So if I can do an acupuncture point or two, that will flip the switch into rest and digest.
It resets the nervous system. And sometimes it lasts for days and sometimes it lasts for the time that somebody's on the table. And that all depends on the patient and the rest of their constitutional makeup and what medications they're on and what's in the background and all of the rest of that. But I have lost people in mid sentence when I, you know, we're just chatting away and then I put in the right combo of points of like, oh.
Wow. It's it's pretty amazing to watch that happen. Yeah, and I get the occasional person that just nothing is going to reset that nervous system. They're so hyper-vigilant. Yeah, it I work a lot with cancer patients, which we've talked about, but I also work a lot with veterans. And some of my veterans are so hyper-vigilant that we're we're just not going to get them there. These are people that were trained to sleep with their guns by their side and be up with.
on a hair trigger. And it's really, really hard to reset that nervous system out of years of training.
speaker-0 (09:47)
Absolutely. Wow, that's so interesting. So, from a cancer patient's perspective, and in your chapter, you tell your story of you being diagnosed with breast cancer and some wonderful stories of patients that you've treated with cancer, which I love. And we talked a little bit before we started recording about what acupuncture for a cancer patient really looks like. Because I know very intimately well as a nurse.
And I gave a lot of drugs and chemotherapy. A lot of times patients are told you absolutely cannot take certain supplements, you can't take herbs, whatever, because there isn't a lot of information about how those those substances interact with the drugs that the person is getting. And the concern is always that the treatment you just got, the chemotherapy or whatever it was, could be, harmed or not.
work as well or whatever from other things happening, right? And so the thing I love about acupuncture is it isn't any of those things. Right. It doesn't interact, right? And so what how would you s explain using acupuncture to a patient who has cancer? What what how is it used in a complimentary way?
speaker-1 (11:04)
So what I'm generally telling my patients, first and foremost, I am not treating your cancer. I'm treating you, the human who has cancer. And in Chinese medicine, we have a whole system around supporting the normal, which basically means taking care of the normal underlying physiology.
Everything that we do in cancer treatment that is damaging cancer cells is also going to have some collateral damage towards healthy cells. So what can I do as a complementary, and I'm using that word very deliberately, complementary care practitioner to support the normal physiology in a way that does not undo what the chemo is doing.
So, we know we can't use antioxidant herbs. I almost never use herbs with my cancer patients. There are some isolated occasions where the side effects that the patient is experiencing are severe enough that they're looking at dose reduction or discontinuation. Where if I have enough science behind an herb formula to justify it, I'll send them back to their oncologist with a couple of studies and say, you know, I think.
This is a point where it might be worth trying this. What do you think about this? And here's some data for you. But I'm extremely conservative about internal medicine. That said, well, we just talked about with flipping the switch on sympathetic nervous system. If we talk and calm down that response, we will almost always calm down nausea because.
Chemotherapy-induced nausea is central nausea. It's the same mechanism for the most part as first trimester nausea, and it's mediated through the serotonin system, which is very much nervous system activated. So if we can calm down a stress-anxiety response, a lot of times nausea gets better. If we can switch into rest and digest, a lot of times appetite improves, which is a big issue for a lot of people on chemotherapy.
There's some incredible data out there for acupuncture and neuropathy. And what I'm finding in my clinical practice is that if I can get somebody coming in almost immediately when they're starting chemo and be consistent with care, they will have less neuropathy.
And it doesn't last as long. It's often more transient. Where I have seen people that have come in years after that are still struggling with neuropathy. And sometimes we can budge that, sometimes we can't, depending on how badly the nerves have been damaged. So I think, the primary things that I am supporting are sleep, digestion, getting blood flow into the fingers and toes at the right.
Point in the treatment cycle that we're not flooding those small vessels and nerves with chemotherapy drugs that make everything worse, but waiting until the drug is metabolized out of the system and then going all out on getting circulation going to those body parts and getting them healing. I do a lot of work with lymphedema, and that can be controversial.
But there's more and more data out there now that is saying that not only do acupuncture needles not increase risk of lymphedema, they actually can reduce risk. And so I'm working with people as much as their surgeons will allow immediately post-op and even pre-op if we can.
Do some acupuncture and then add some basic lymphatic drainage support. and I've taken a level one class myself for lymphatic drainage. I have somebody else in my clinic who specializes in that as a massage therapist. So I'll do really basic open the main drains, move fluid, out of a limb. But if somebody needs full body decompression, I'm sending them to the expert. and I've got a couple of people.
In my network in different parts of town in San Diego, who are fantastic for that. and I think that's the other place where, as a former case manager, that's still in my genes. So connecting people to services and people is a huge part of what I do. Yeah, I've done so much networking in the complementary care area that.
You know, I know the lymphatic specialists, I know the mastectomy bra fitters, I know the wig sellers, I know where to send you for things like cold mittens for pre-chemo and all those kinds of things. So I'm constantly connecting people to services.
speaker-0 (15:52)
It's such an important thing that people don't always think about. Cause one thing we were talking about is how challenging it can be to navigate, even if you're just navigating the medical system by itself, right? It can be really challenging and people don't always know how to do that. And so I know that's one thing that I feel very strongly about is helping people to even just understand how that system works.
When you add in the complementary parts to health, which is really what this whole book is about. It's about your body, mind, spirit, soul as one entity. You are literally connected in every way. And everything that you do to support you and your health is going to adjunct everything else. And so that is an underlying premise of this book. And I
I love that you talked about it as complimentary and not alternative. I am really, really trying to get people to stop saying that word.
And that was what it was years ago, I often love to tell the story of when I first became a nurse and got certified to give chemo and I worked in an infusion center, people would ask, can I have acupuncture during my chemos? Can my chemotherapy? Or can I have the pet therapy or can I have art therapy or Riki or all the differing things that they want wanted and maybe had used prior to being diagnosed?
They were always told no, not that this is a sterile environment because it's not, but basically, this is what we do here, nothing else is happening, and now that is very different. 20 years, almost 25 years later, people are able to do differing modalities and have that adjuncted. So I think one of
the things that we discuss that is really important to us is that cancer patients know that you are in control of your experience and your your care really. You're you're gonna see differing specialists, you're gonna have a physician, you hopefully will have an acupuncturist after listening to this episode.
speaker-1 (18:07)
Yeah, please have an acupuncturist about it.
speaker-0 (18:10)
whoever the different people are in your sphere, like your team, that is in a very important part of your care, but you are at the center of that. And what did you want to say about that, Lisa? And this is from your professional experience, but also very intimately from your personal experience. You have lived this, you have been a cancer patient.
speaker-1 (18:31)
Yeah, I what I found going through both going through it and I run a support group. And so I have exposure to a lot of different patients at this point is that it's really easy to feel like you don't have any agency. Your doctor is telling you what to do, and your role is to do it. And
As somebody who is medically trained, one of the first things that I said to every single practitioner, when they have that little line at the bottom of the forum that says, Is there anything else I should know about you? Uh-huh. What I wrote on that line is, I am medically educated and I need for you to treat me like a peer.
speaker-0 (19:09)
Mm.
speaker-1 (19:10)
And what that did is it opened up the doors to having discussions, which is what I needed. When I was first diagnosed, the first thing that I did.
Because my coping strategy is to gather as much information as I can. I'm I'm a I'm very much a geek and I need data. So I dove into everything that I could find about the type of breast cancer that I had. I looked at all of the literature around complementary and alternative medicine because as an acupuncturist, I
I think I maybe wrestled a little bit more with the prospect of doing chemo and radiation and surgery because it's so counter to what we're taught in our system of medicine. But when I looked at all of the data out there for standard of care versus alternative, everything that I read about alternatives said outcomes are worse, substantially worse.
And at the end of the day, I decided, and and again, I'm using that word deliberately. I decided that I was going to do standard of care treatment because that with the what I had convinced myself is that that was what gave me the best chance being diagnosed at 52 years old of seeing my 70s and 80s.
And I'm really, really fierce with the people in my support group and in the online groups that I'm in. When somebody says, well, my doctor won't let me, my doctor won't, my doctor tells me I have to do this, my doctor won't let me do that. okay, take a step back. You have agency here. Your doctor is giving you their best recommendation.
And that recommendation is based on all of their years of experience and all of their understanding of medicine and all of their understanding of the most current medical literature. And all of that's based on population statistics. And not everybody falls within one standard deviation of the mean. And you might be an outlier or you might not. But let's take a look at that data and let's have you be an active participant.
In this discussion about what is being done for and to your body as you go through this treatment. in my case, I chose standard of care because I felt like that really gave me the best option. I've had patients where it really hasn't been the best option. And they've and I've encouraged them to go get second and third opinions because I felt like they were they were two or three standard deviations from the mean of normal population.
with really out their reactions to things and were just getting sicker and sicker and sicker to the point where the treatment was worse than the disease. and these are all discussions that need to be had with the entire team. And as the patient, you are absolutely part of that discussion.
speaker-0 (22:08)
For sure. And I can see, I I just remember working as a nurse and I can see how it comes across to patients. And maybe we'll talk about a patient who maybe doesn't have any medical background, no family members and medicine or something like that. They're in the system, they don't have a lot of basic knowledge, and they're trusting their team, which is an important thing to do. You need to feel that trust.
And the feeling that you're in the right place, You have the right team of people, which in oncology, it's a team of people that take care of you. And it's really important for you to not be afraid to ask questions. It's really important for you to advocate for yourself if you have a symptom or something comes up, And so
I used to just drive home those factors. And also, most things don't have to happen in an urgent manner. No, yes, if you are sick and you need to go to the ER or something like that, I'm not saying you don't do that. what I'm saying is that if the plan gets switched and you are literally deer in headlights and you you need a day to think about this, that is okay.
It is okay for that to happen. And yes, the schedule gets a little misaligned. And yes, they have to fit you in the next day or whatever. You are a human being and you deserve to be able to sit with that and reflect and talk to your loved ones and your team about what's next for you. And I told you that I was just fiercely advocate for this and for with patience. And
It wasn't even something that I ever just consciously decided. It was literally just something inside of me. And when the opportunity came up, I supported those patients in that situation. And it is something that every patient needs to know. I think it's just really, really important.
speaker-1 (24:07)
And I think the whole system is geared towards just shepherding people through. Yeah. Yeah. And I'll and I'll share a story with that. Because when I when I was going in for my lumbectomy, I the facility that I was being treated at was piloting using nerve blocks pre-anesthesia for surgeries. And I had agreed to go with a nerve block. And as they're prepping me for this, this
Doctor comes in and says, okay, I need you to sit up and bend forward so we can put some medicine in your spine. And being medically trained, I'm like, okay, wait a minute, breaks on. What exactly are we doing here? And and he repeated himself. Was like, okay, so I have seven cervical vertebrae and 12 thoracic vertebrae and five lumbar vertebrae. And um
I don't remember exactly what the enervation is to the breast. So maybe you could be a little more specific about where you're putting this medicine than exactly what agent you're injecting into me right now. And he just like, whoa, looked, steps back, he was like, Do you have medical training? It's like, yeah, as a matter of fact, I do. And I need to understand what you're doing to be comfortable with this treatment. And you know, and he
did give me more information and fast forward to post stop. And I'm sitting at my kitchen table with a cup of coffee. And I reach for it with the left hand, which was the side that I had my surgery on. And I cannot grip that coffee cup to save my life. And my first thought was panic. Actually the first thought wasn't thought at all. It was just panic. And then the brain kicked in like
Okay, what's going on here? Did my nerves get damaged? wait a minute. I had a nerve block. wait a minute. They blocked T1. Hmm. T one goes to these two fingers. That's 70% of your grip strength. and I went from panic to curious. And then I spent the rest of the day watching the grip come back as the nerve block wore off. But you know, and not everybody has that medical training to look at it that way, but
I think that being educated and hey, this nerve block is going to affect more than your chest wall if you notice your grip strength is a little off later in the day. Don't worry about it. That's normal. Right. Would
speaker-0 (26:28)
Okay.
speaker-1 (26:28)
be really helpful information for the patient. Absolutely.
speaker-0 (26:32)
Absolutely. And a lot of times patients do get good teaching. We used to be, I used to always say oncology nurses are just teachers because you're just constantly teaching, teaching, teaching to hope that when the patient is home in that circumstance, that they're like, yeah, I remember that they said that this might take a little while for this to wear off. Right. But the fact of the matter is when you are coming out of anesthesia in a stress state, in a foreign environment.
You do not remember everything. And so it is just a such a good reminder to everyone to not panic. maybe that's your instinct, right? But then once you come down from that to remember and be like, okay, what are my what's my access to information here? I can read what they sent home with me. I can ask the person who is with me, do you remember them saying something about this? I can always call. Every cancer patient is always given phone numbers to call. So
You have ways to get information. And I think a lot of times when you're new in your treatment or in that diagnosis period, things are a little bit more amplified, You don't necessarily know all the different things.
speaker-1 (27:39)
All
you're also on such overload, you
speaker-0 (27:43)
Yes.
speaker-1 (27:44)
especially if you're not medically trained. And even with all of the medical training that I have, the information that came to me was coming out of a fire hose. And my husband, who has no medical information, sat with me in all of these meetings like a deer in the headlights. You know, and that is he is not a deer in the headlights. This is this is a man who is uh
A geek in his own way, in his own field. He's an engineer. He understands systems and science. And he was so overloaded. Yeah, we spent hours at home just processing all of this. So if you come into this without that background, now you're not, you have to learn the language of medicine. And then you have to learn the sub-dialect of oncology.
And it's presented in visits that are generally shorter than they should be because of the insurance constraints. And so there's a whole lot you get handed a whole lot of paperwork to under to explain that is either dumbed down to a seventh grade level that doesn't really explain it adequately if you're more educated.
Or so over your head that you're spending hours on Medline trying to figure out what the heck, with a medical dictionary trying to figure out what the heck has been said. And it takes time to process all of this. And meanwhile, your nervous system is spinning because you're feeling urgency to get things done, but you don't understand what is being asked of you. And it, it's a great time to just take a pause and go see your acupuncturist.
speaker-0 (29:17)
Absolutely. Or go for a walk, right? Or do something else. Take a break. Yeah. Because that hypervigilance is
You most people are in that sympathetic state. They're really concerned for themselves, obviously, or if it's this is for a family member, your family member or a friend. that is so normal. But I think it's really important to also think about the balance for our physiology that we need because uh everybody has been in that place where they've been studying or reading something, and you get to the point where you're just like shut down. You can't read anymore, consume anymore.
You need to take a break. And so those breaks are especially helpful if there's something that helps you and grounds you a little bit. Going outside, you're in San Diego, going to the beach.
speaker-1 (30:03)
I mean I was a I went into this as an ultra distance cyclist. Right. And so my answer to everything at that point while I before I was too sick to do it was just go pedal until I was so exhausted I couldn't think anymore. And then fall, then I'd fall over and come home and eat and pass out. but
At that point in time, 125 miles was an easy training ride for me. So I'd go out and just push the pace for 50 or 60 miles and come back in exhausted and in a completely different head space. And that's something that again isn't necessarily accessible or appropriate. my doctor was not amused when I tried to do a 200 kilometer ride between my second and third chemo cycle. and it went
Pretty much the way one might expect that it would go. Although I did make it eighty miles before I called it a day. and then I backed way off because at at that point I was too fatigued and too weak for that to make sense anymore. Right. But you know
speaker-0 (31:07)
Such an important part of who you are though. So I see the balance. I see both sides of that. It's important for you to continue challenging yourself to be in that normal frame of what being outside on your bike, something you enjoy so much and gives you obviously the exercise benefit, but the all the other benefits that that does. Right. But then on the flip side, you've never gone through cancer dreaming before. And so
don't really know how it's gonna affect you. And then if you're listening to your body, you're feeling it and you're like, Whoa, okay, I'm gonna stop now. And so it's still a victory that you rode eighty miles.
speaker-1 (31:44)
Yeah, exactly. Exactly. And I, and I went out on that one with no expectation that I was going to finish. I had been on a streak where I had done a ride of 200 kilometers or longer every month for 70 months. And I was not breaking that streak without a fight. Yeah. And so I went into it going, all right, I am not going to, aside from one hill that I knew was on that route, I am not going to get my heartbeat over 110. I have 13 and a half hours to do this ride that.
would have been easy under other circumstances. It's fine if it takes me the whole 13 and a half. My only goal is to see what I can actually do with this body as it is right now. Yeah. And and I actually had a story about that ride published in American Randonor that year. Oh wow. I called it um what did I call it?
Eating the elephant or something like that. from the parable about, how do you eat an elephant one bite at a time? And I it was a colder day than I was expecting, and I was really struggling with body temperature management. And I was using a lot more energy to stay warm than I was expecting to, while having a ch a lot more challenge with keeping calories in. And at about mile 40, I was calling my husband, going, I don't know if I can do this.
And he would say, Can you ride 10 more miles? Yeah, I can definitely ride 10 more miles. Okay, ride 10 miles and call me.
speaker-0 (33:09)
Mm.
speaker-1 (33:10)
And when I hit the point where he asked, Can you ride another 10 miles? And I said, I honestly don't know. That was the point where it was like, Okay, sit your butt down. I'm coming to get you. And and he did, and by the time he got to me, he was like, Yeah, I could ride another 10 miles now.
speaker-0 (33:26)
They just rested.
speaker-1 (33:27)
to
ride he had to drive 40 miles to get to where I was at that point and I'd rested for 45 minutes. It was like yeah go go home I'll finish the he was like no get get your butt in the car.
speaker-0 (33:39)
sounds like you have a great support system. Yeah.
speaker-1 (33:42)
I d I did and and I very much recognize the privilege that I had very good insurance and a very good support system. And a lot of my patients do not have either of those things. And that just adds to the burden for those people.
speaker-0 (33:58)
Absolutely. So you have started a support group. You talk about in the book that it started in person and then COVID happened, right? So it went online. supporting women, because it's about breast cancer, is that correct? Yes. For
speaker-1 (34:12)
Thanks.
speaker-0 (34:12)
breast cancer patients. So men can get actually can get breast cancer too. Um, some people might not know that, but obviously predominantly it's women. what would you say to someone that might be listening to this that's in that?
situation, maybe doesn't have the best insurance and or doesn't have a personal support system or person that in their world, how would you guide them?
speaker-1 (34:38)
I would encourage them to join at least one, if not several, support groups. Within that peer-to-peer group, there is so so much support. I have people in my group who have gone out and driven people to other patients to appointments. I have people in my group who will donate back once they've finished chemo.
I have cold mittens and booties. If anybody needs them, they'll donate them back. There's a tremendous amount of wanting to help other people, but not necessarily knowing how as they're going through this. Yeah, I've personally done a little bit less of that one-on-one in part because I'm seeing so many cancer patients in my clinic and I'm running the support group. So I'm holding the container.
And connecting the people to one another, and my time is too short to go out and then go meet people at their house and take them to appointments and those kinds of things. But there are people in groups that maybe are retired and have more time on their hands and they're further down the way in treatment that are, that have the time that are honored to do those kinds of things. Insurance is a bigger, trickier discussion and the
Talking to the nurse navigator about those kinds of financial issues and getting hooked up with the facilities social work department can be really helpful for navigating some of those things. There's also an organization called Triage Cancer, and their whole mission is helping people to manage the
financial and legal challenges of going through cancer. if you're trying to figure out how do I apply for family and medical leave and not having the resources and the social worker at the facility that you're at is too overloaded to hold your hand through it. Triage cancer can be really, really helpful with those kinds of things. And there are there are definitely benefits out there.
We fell into an income range where none of those things were available to us. but for somebody who is falling into an income range where it's an extreme burden to pay for co-pays, it and it's you're borderline for qualifying for things like in my state Medical, I'm not sure what that's the low-income insurance plans are called in other states. there are
ways to navigate accessing some of those programs as a cancer patient that aren't necessarily accessible without that diagnosis. And those are the kinds of things that triage cancer and the social workers at the facilities should be really good at helping you to navigate. And you know, not all social workers are equal, of course. So
speaker-0 (37:36)
Right. I was just gonna say that, some facilities are huge and so they have huge teams and you might not know the social worker or the case manager or someone like that as well, or the doctor's nurse. but remember that the contact you have with the people who are taking care of you every day, whether that's in radiation or in if you're getting um IV drugs like chemotherapy, immunotherapy.
Those people can also help you navigate the system. So we used to get those questions a lot because that's the person that sees me and I have their my undivided attention on them for five or six hours while they're there, So they would think of things and be like, yeah, which one is the social worker that I'm supposed to talk to based on who my doctor is or whatever, however they organize it, So just remember that
This is a team of people. And even though your nurse, in this circumstance that I'm telling you, might not be your social worker, she most likely is not. She can help you get connected to the right person. And a lot of times in Infusion, it's great because you're there, you're not going anywhere for a few hours at least. And so people can come see you. And so we used to have people come down and see people in the infusion center all the time. So just remember that that is accessible to you.
Especially in big cities like you're in San Diego, I'm in Denver, cities like that, or even smaller cities that have a good system set up in the medical system, they will have all kinds of different things for patients based on what they need. So you just need to be open about what you're needing help with. The other thing I would say with insurance is I didn't even know that our insurance covered acupuncture.
I got acupuncture a couple of years ago and I was like, oh, okay, I'm gonna pay for it out of pocket. It was important to me to do that. But when I was reading through my insurance information, we had 12 sessions of acupuncture every year per person that was covered. So just ask the question, call your insurance company or read through your benefits because sometimes it is included.
speaker-1 (39:46)
Yeah, there's there's a lot of things that are included. Uh lymphedema care is another one that is mandated to be included. And in the realm of that is generally occupational or physical therapy and fitting and purchase of garments. But that is something that is required at the federal level for all insurance companies to cover.
No, I ended up choosing a PT who was out of my system, who specialized in lymphedema care, who was not in my plan and my out-of-network benefits, the deductible was so high it was irrelevant. And I paid for that out of pocket. But the lymphedema fittings and the sleeves that were recommended, I mean I ended up never needing those. I had chest wall lymphedema, not arm lymphedema, and everybody worried about my arm.
So I had a completely different path with that particular issue, but excuse me, it did get covered to have the fitting for the sleeve and to have you're entitled to a certain number of sleeves and gauntlets every year. Your insurance company, if you are a breast cancer patient, and you have not done reconstruction and you want prosthetic breasts to slip into a bra.
The bras and the breasts are considered medical devices, prostheses that are covered under insurance. So finding the finding vendors who are covered by your insurance is a whole other discussion. I ended up having to involve the insurance commissioner to find a vendor that would that my insurance would accept because they were wanting to send me out for mail order for lymphedema garments that needed to be fitted.
well, I can buy them online, but I still need to be fitted.
speaker-0 (41:35)
Right. So it works.
speaker-1 (41:36)
So it works. So it's the right size. So it's the right amount of compression. so navigating all of these kinds of things it can be challenging, even with all the case management background that I have, I ended up having to go to the insurance commissioner to get this dealt with.
speaker-0 (41:53)
Right. So this is kind of back where the support group comes in because if you maybe don't have the personal support in your personal life, that's a great reason to go to a support group. But also helping these people who are just further ahead and have gone through this and they know intimately how you feel going through your diagnosis. And so they want to help you. I I thought that suggestion that you made was so perfect. It just reminds me of the generational communities that we
have still today, but really is from decades and centuries ago where the elders brought up the younger generations, And that's really the same idea.
speaker-1 (42:34)
I have two ladies in my support group who both work for different areas within the San Diego School District. And they have absolutely miserable insurance. And one, it's it's a hundred percent HMO, and they've chosen some of the most difficult organizations in the region to work with.
probably because they're lower cost and the school district has budget issues. But one of the women in this group has been like she's a little pitfull when it comes to getting what she needs out of these systems. And she digs her teeth in and then keeps pushing. And she has managed to navigate this system and get everything she's needed out of it. And then she's been coaching the other woman who's
In the same system, who has had so many complications with one thing after another, was not getting what she needed, and was so limited with the HMO doctors that she didn't have choices. And so the one woman has helped the other to navigate into a completely different team where she's finally actually getting her needs met.
So she's been appointed now. Anybody who comes into this group with this particular plan, you are their point person. I keep telling her she needs a second career as a patient advocate. she's an event planning planner, but she would be just amazing as a patient advocate.
speaker-0 (44:04)
Yeah, that's so amazing. Well, it's just the power of community, And people being there to support you along the way. I think one of the things I know from seeing and taking care of a lot of cancer patients, also my husband has cancer, is that taking getting too far ahead of yourself, really just taking things day by day, sometimes week by week and month by month, but
When you get overwhelmed to just really bring it back to what are we doing today? What are we doing tomorrow? And really just take one one step, one foot in front of the other, to keep you going. Cause that's really the the best advice that someone gave me once. And I think it just applies, no matter what situation you're in.
speaker-1 (44:47)
sometimes it's minute by minute yeah sometimes the day is just too big you know and I kind of run myself back to many many years ago I started my career as a substance abuse counselor and the 12 step programs talk about one day at a time but when you're struggling with a day I'm not going to take that drink or do that drug for the next minute
speaker-0 (45:10)
Right.
speaker-1 (45:11)
and evaluate it one minute at a time and
I leaned into that a lot also as an ultra-distance cyclist because there are times where you just do not want to go any further. The the 600 kilometers is way too big to complicate. And so can you ride another 10 miles? Yes, that I can do. So okay, we'll do that and then reevaluate. So breaking this down into manageable steps.
And then the other piece of that is that it's so, so easy to get lost in the fear and the grief and the negativity. But yin and yang are intricately interconnected. You cannot have one without the other, no matter how dark things feel at any given moment. There is always a little spark of light in there somewhere.
So and it feels like the darkness is just impenetrable and you're just stuck in those moments. And we all, I mean, I certainly had my share of those moments. And I think every every patient does. That's not just germane to cancer. Looking for the light. So one of the things that I did all the way through my treatment, and I still come back to when I'm having periods of struggle is the gratitude practice.
And at the end of the day, just write down five things you're grateful for. And there were days where we're like, I'm grateful I didn't throw up today. Um, and sometimes it was, you know, much deeper than that, you know, or you know, I'm grateful that I felt good enough to get outside and do some exercise. I'm know, I'm grateful that I have an amazing support network.
we're getting so caught up in things in what I call toxic positivity where you're not allowed to feel bad. And this is so not that. It's all of that, all the ick is still there, but we also find what we're looking for. So if everything that you're seeing and looking for is all the reasons to be miserable, that's what you're going to find.
When you're feeling crummy, if you look for the things that are positive, even though you're feeling crummy, you start to find more things that are positive. And maybe they're just little kernels, but they're the things to hold on to when you're really, really struggling in this.
speaker-0 (47:36)
I'm so glad you brought this up. There's so much research on gratitude. So if you need to look into that, please do. But I just can't think of a better place to end this conversation. I could keep talking to you for a long time, Lisa,
But I just can't thank you enough for being here, all of your expertise, sharing your personal story. It's means so much and it really does help people. I know you know that. So thank you
speaker-1 (48:02)
Oh, you're so welcome. Thank you for the invite and for having me.
speaker-0 (48:05)
Anytime.
