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What does my anxious friend with cancer really need?

Anxiety and Cancer and Friendship

Sometimes those of us with anxiety think we have cancer. And then sometimes we actually do. And sometimes it makes the anxiety worse. Anxiety and cancer. I see a lot of learning opportunities here.

Today I’m introducing you to Courtney, who will share about her self-talk as she worked through some discomfort in her body, through her diagnosis, and shares about the cancer journey. This is episode TWO of TWO — This week Courtney shares advice for how to get the right support for yourself as a patient and how to support someone through their cancer journey–what do they really need?
The transcript and resources for this episode can be found below.

Subject Resources

Courtney’s blog: You are Not Alone

American Cancer Society

Transcript

[00:00:00] Cassandra: This is the continuation of last week’s episode. Courtney is in the middle of sharing about her cancer journey. Last week, she shared about her diagnosis and how she started treatment this week. We’re getting into the details of her support system, what they did and how she leaned in to knowing herself, to make the most of her relationship 

[00:00:39] Courtney: I had treatment monthly. So for that first week, right after treatment, That was usually my worst. So that was where I would sometimes get sick and throw up. They were able to, after a couple months increase my increase, the medicine that they gave me during treatment. And I’m at home medicine that I could take after to help lessen the nausea.

So I ended up only throwing up the first two or, you know, the first two treatments. They were, I was still very nauseous, but it never brought me to the point. They’re like, we don’t want you to get to the point where you actually throw up. We’ll try to manage your nausea as best as possible. So That was a big one.

For me, that fatigue was something that as the treatments went on, it compounded. So by, by treatment five, I was fatigued more than just the first week. You know, it led into week two. My last treatment, the fatigue lasted, , two, two and a half weeks and fatigue, the best way to describe fatigue.

 When you’re, when you’re really sick, you have a bad cold, or you have the flu and that point where like it’s exhausting to take a shower or it’s exhausting to like heat up soup. That’s fatigue. Like. Comparison. And so that was scary for me because I’m so used to being independent and I was still working at the time doing during treatment.

So I would take a week off and then I would work the rest of the time from home or in the office. And they were really gracious with me. But you know, I would walk to my car and I would literally be just exhausted from it. And I would just have to talk myself down from that and go. Like you don’t need to freak out right now.

This is part of the process. This is, this is a result of the chemo therapy that’s in my body. I will gain back my strength and had to do a lot of self-talk. Cause the fatigue was scary. When you’re used to having energy. 

[00:02:30] Cassandra: So, and I think along the lines of that, self-talk, you’ve talked about your support and you need a lot of support in this time from your doctor, but also from the people around you, you talked about bringing your mom and your husband to the first appointment.

What were some things that the people in your network or your community, the people right around you who are, who are always there? What did they do or how did they help or how did you have to ask for help? What did they do that surprised you? I just asked you like five 

[00:02:57] Courtney: questions, slow those down. It’s okay.

So I have a great support group and was very thankful to be back in San Diego, which is where a majority of my friends and family and even church, community where, so. I had two days of treatment a month. So, and once again, every treatment is different. So I would go in for two days straight. The first day I’d go in and it’d be about a six hour six, five to six hour appointment.

And then the second day would be really short interview about an hour. These back-to-back. Yeah. So like Monday, Tuesday. So I go in on Monday for five, six hours, and then I, the medicine that they would give me would basically, I would basically sleep the rest of the day and then day two, I’d go in and they would just do one medication.

Not both, I believe day two was the Rituxan and. Then I would not see them again for another four weeks. So I had one of the things that my friends and family did was I would have someone come with me on to every appointment. So my husband went to the majority of them. My mom would go to some, and that was a really great way to invite people in because people want to help people, especially when they care so deeply for your life.

What can I do? And honestly, there’s. Not a lot they can do because it’s just so. So much what you’re going through. And so I just would try to think of things that I could include them on that. Like, yes, it was great to have them there. But it was in some ways more for them than it was for me. And that was okay.

 So I would have someone different come every, every Monday for my longer appointment and you know, Chat with me, we play card games. It would depend on, on the treatment. But I usually got pretty groggy, so it was more just chill hanging out and it gave them an opportunity to see, you know, what treatment, what a treatment plan looks like.

So inviting people into, into your appointments is great. If you feel comfortable with it. And I would usually ask them to come a little bit later. So the first thing that they did. That they did from you as they would actually have to find a good vein. And that was the most stressful part for me. So I didn’t usually want someone there for that.

Cause it was, I felt the burden to have to host somebody and that’s not what they’re asking of me, but I felt that that sensitivity. So once again, learning, like what are, you know yourself well enough? And I wanted to have people come, but I would say, Hey, can you come, you know, an hour into. Into my appointment and they would come at that point when I felt settled and I was getting the, the medicine at that point.

So that’s one way, another way is

putting together a care package. I didn’t ask anyone to do this, but I got a ton of care packages along the way. And some great things. As silly as it is. My favorite item that I got from a care package was gum. And you’re thinking I’m like, get yourself your own gun, Courtney what’s why do you need someone to give it to you?

But it was something that another cancer patient, a former cancer patient gave me and I was like, cool, gum, thanks. And then the minute I started treatment, I was like, gum, this is amazing because you’re depending on the type of drug and treatment that you have. Your mouth tastes different. So it tastes, mine tasted more like irony than normal.

 And I would also, when I was nauseous, gum was really refreshing for me. And yeah, so it helps in a number of ways. Yeah, it helps. And I would suggest getting for, for those of you that are the actual one, going through it, maybe pick some gum that is not your favorite gum, because as you go through it, you may never want to eat that gum, you know, again.

So if you always like spearmint, like maybe do I did a tropical gun, something that I would never normally eat, but it was really refreshing salivating. So gum was a big one. I got a ton of coloring books because there’s a lot of downtime and colorings, a very easy. Activity that you can do when you’re just waiting around.

 Another one was like a teapot and tea and ginger chews gift cards to restaurants was really great because there were times. I do the majority of the cooking. So it was a little hard on my husband because I did not have any energy to cook and sometimes I didn’t want to eat and he needed to eat.

So gift cards are always great and it gives us the freedom to, you know, go and get it when we want to. And. For those that are essential oil levers, I also got some essential oils and really just a lot of things that, that are somewhat neutral. So I, I would suggest like staying away from like really heavy sense because depending on the type of treatment.

Sometimes smells are, you’re very sensitive to smells. So just trying to stay neutral in it. And then probably the last thing that was really special to me is I got some, some sweet blankets that people actually handmade for me that I could take with me to treatments. And so I would cuddle up because you’re usually pretty cold when you’re getting your treatments and you want your veins to be warm so that things pump quick.

And then I also got a kind of a shell wrap that I used, and that was really helpful because I ended up getting a port in my chest so that they could access and inject the medicine through my part, as opposed to through the veins in my arms or my hands. And so it’s nice to have something that you can kind of like take on and off very easily when you’re getting treatment.

So those are some special. Care packages. I feel like you just 

[00:08:29] Cassandra: put together a care 

[00:08:30] Courtney: package right there. Yeah, I did. So there’s some ideas for you guys. That’s a wonderful, 

[00:08:34] Cassandra: well, so we have been talking about your cancer past tense and that’s because. 

[00:08:41] Courtney: Are you cancer free? That’s a great question. So when I researched cancer-free a little bit ago, I learned that cancer-free technically means that you have been in remission for five years, meaning no science, no sign of cancer.

 And so I am technically not cancer-free because it hasn’t been five years. But I am in remission and have been in remission for 14 months. So yeah. That is worth celebrating. So I have not had any signs of metabolic activity for 14 months since. And that was, I actually was in remission. At the end of month, two of my six month treatment and I was like, cool.

So are we, are we done with the treatment? Like I can just go back home and they’re like, no, you need to finish the treatment because it’ll help. That’s essentially, it’s going to also help keep it off and ensure that they get rid of any of those cells that might be lingering that are metabolic.

So, yes, so I was in remission fairly early on and and that was, that was probably one of the hardest emotions. Pieces of my journey because I was so excited and shared with everyone and like share, I shared my whole journey on social media so that people could follow along. And when I shared that I was in remission and people were like, that’s awesome.

That’s great. This is amazing. And then I noticed that the care and the check-in started to lessen. And I think that was because people think like remission, great. You’re done. You’re good. You’re moving on. And that doesn’t necessarily mean. You’re not out of the woods yet. And that was something that I had to learn, identify, and then communicate back to people.

So I did my best to say like, Hey guys, I’m in remission, super thankful, but like, I am not done with this fight yet. Like I’ve got another four treatments. And even then the healing process doesn’t start until it takes a while for the, for the medicine to actually leave your body for your, and then for your body to actually build back all of that.

 Healthy cells that chemotherapy, although it’s great, you know, it’s basically attacking your body, the good and the bad cells. And so it takes time. So that was a big, a big takeaway from you was going. I’m not, I’m not out of the woods yet. I’m going to rejoice and be thankful, but this is an over how long was it 

[00:10:57] Cassandra: until you felt like Courtney again?

Fatigued Courtney or nauseous Courtney 

[00:11:03] Courtney: or so I ended the treatment in December of 2019. And so I’m coming up on my one-year mark of not having chemo, which is amazing. And to be honest, I’m just now starting to feel. Fairly normal. The, the medicine does where it does leave your body, around 30 to 60 days, at least for mine specifically, but then you still have a lot of residual things that come up.

 There’s emotional turmoil that comes from it because of what you just went through. Very traumatic. It can be a very traumatic experience. You also have your physical body. That is like I said, trying to build back strength. And so it’s taking it’s. There was a time where I couldn’t even walk a mile. And I had to build back that strength.

 There’s also I still had a lot of pain in my stomach afterward, which was, which was scary for me cause I was thinking, okay, the cancer’s back. All right, here we go again. But my stomach was sensitive because that’s where the majority of my, of my cancer was. And so that’s where the medicine that’s where the chemo was working its hardest.

And so that’s the area of greatest weakness. So I’m still trying to gain back my six pack abs in all of this that never existed in the first place, if we’re being honest. But yeah, it’s, I mean, my doctor said it’s takes six months to a year before you feel, you know, fairly back to normal and that’s going to be different depending on how long your treatment was and what type of medicine you had.

But for me specifically, I’m just now getting to the place where I’m like, oh yeah, I feel, I feel good. I don’t need a heating pad at night. I don’t need to break out my walk. I can there’s just so many external things that you don’t even realize until you’re starting to feel better.

That’s so good. 

[00:12:52] Cassandra: The scans though, you still have to have scans because you still want to make sure that you are continuing to be in remission. And you’ve shared a little bit about the, the anxiety and the emotional stress that comes with that. Can you talk to listeners about that? 

[00:13:09] Courtney: Yeah. So, like I mentioned, I’ve been struggling with anxiety really ever, ever since my dad passed from cancer.

 And for me, anxiety 

it really shows when I’m feeling that I’m not in control and. Some way, somehow over the years, I have convinced myself that I’m in control of the things in my life. And to some extent you are, you know, there’s things within your control. You can determine when you wake up in the morning or what you feel your body with, or, , there’s things that you can control, but there’s so much more out of our control.

And so I had to learn. How to be okay. Not being in control. And the worst, the biggest form of anxiety I experiences when my body is when I’m not in control of my body. So this was truly the worst case scenario that could’ve ever happened for me. This was my biggest nightmare. Having cancer and having to actively choose to do something to my body.

That’s going to make it feel really bad, but it’s also going to heal it in some ways. 

[00:14:10] Cassandra: It’s a weird combination. 

[00:14:12] Courtney: Very strange. And so I my anxiety flared big time because I wasn’t in control of my nausea. I couldn’t do anything about it. I couldn’t make it go away. There’s only so many things that were within my control and it felt very minimal.

So I have a relationship with God. And so that was a big piece for me was, was prayer and journaling. I would journal a ton and there were a lot of things. That through the process that, that God was gracious and shared with me to encourage me. And so with anxiety, anxiety is very forward focused.

 So it’s always thinking about something that may never come to fruition. And so I had to, to really focus on staying present and not looking more than that. An hour ahead of my day or a day, you know, looking more than a day out because it was exhausting and scary because you know, when you’re told you have stage four, non-Hodgkin’s follicular lymphoma at 35 and you know, your dad’s history, you’re thinking, well, I am probably going to die and leave my husband by himself.

And you know, you go, when you have anxiety, you go to those worst case scenarios, you think that way. And so I had to, I had to step out of that and walk myself backwards and go, okay, what, what is something that I can control right now? I can control. Getting to the doctor’s appointment on time. And even then traffic.

So once again, not in control, but there are things that I would try to do that that, that kind of grounded me and helped me feel like there were things that I was able to control. And a big thing for me that I would encourage. For those that are, you know, walking through a cancer diagnosis or treatment is I did counseling twice a month and that was a saving grace for me because there were so many emotions, so many firsts first that you’re experiencing.

And as a person that struggles with anxiety. That is unknown. It is foreign. And there’s once again, so much that you cannot manage. And so that was a really great outlet for me. But you know, I ended up taking a medication to help with my anxiety and was able to, you know, wean off of that probably four or five months after treatment.

 And I just had to tell myself and my counselor encouraged me and that was. Giving myself grace to be okay with taking medication for the anxiety for a temporary period of time. You know, I didn’t want to take it cause I was like, I don’t want to be, I don’t want to be stuck on this for the rest of my life.

And so just being okay with getting the help I need going to counseling medication, , any other things that I could to try and self care, it 

almost sounds like the medicine was part of your control even. Do, did you feel that way that you were. Well, I can use the medicine to have this under control, or where did it 

make you feel?

A little out of control? I did notice that the medicine helped me. And so that was, that was more of a comfort than it was a shame piece. And so I chose comfort and try to not deal with, you know, with shame because my body was going through so much and you know, our bodies are not designed to, to deal with that.

Level of, you know, attack on, on the cells, Courtney, 

[00:17:31] Cassandra: you shared so much today and I’m so thankful for it because you’ve given us, you’ve truly painted the story of what happened. And I think the importance of having the relationships in your life and really knowing yourself, I think that it sounds like that was probably the.

Thing that helped you is being comfortable with who you are knowing anxiety’s part of your life. And that that’s something that you’re fighting through already, and it’s going to get more heightened knowing what kind of care you need and you didn’t necessarily have to have somebody with you at every Monday appointment, but having them the first appointment, right.

It’s the long one. But knowing that that’s going to strengthen your relationship with people, making that a priority in a time when. It was, it was necessary really. And I just think that’s so beautiful. So I’m thankful for you and for sharing your story. Is there anything else that you wanted to add?

[00:18:31] Courtney: There’s a couple of things that that were really helpful for me in and over the past year and a half. When you say I’m going to speak more specifically to those that are dealing with a cancer diagnosis or walking through. Treatment. It’s okay. To be selfish. It is okay to set boundaries and to communicate your expectations.

And I know that that’s difficult sometimes because you’re thinking, well, I don’t even know what to communicate, cause I’ve never done this before. I’ve never experienced this. But to some extent, You will learn along the way and it’s okay to communicate as you learn it. So it’s not like you have to blanket statement, tell everyone everything you need upfront and you never get to say it again.

 So I would constantly go back to people and reinforce or communicate new things that I needed. And so a few examples of that was when I found out that I. Had stage four, I, I specifically did not share stage four with people publicly. I shared it with a small number of people and I, I left it there because I didn’t think that it was necessary in my narrative to share the stage.

 At the end of the day I have cancer. You’re going to fight my fight for my life. And I also learned that I’m somewhat of a people pleaser, so I’m very sensitive to other people’s opinions of me. And I know that chemotherapy, some people are for it, and some people are very much against it.

Some people prefer the natural homeopathic approach. And I am all for that, but I was doing. God, like I was being obedient to what I felt God was telling me to do. And I had to be true to stay in that course. And for me, what was, what brought me the most peace and, and that doesn’t mean that That that’s what the next person should be doing.

 So I can only speak to mine, but I learned early on. And when I announced to people that I was that I had cancer and I was starting chemotherapy, I specifically said if you have if you have any records, if you have any recommendations or opinions on my treatment plan yeah. Please contact my husband and he will share with me as he feels led.

 I did not want a single person telling me have you thought about doing this or you should be doing that. That was not helpful for me at the time. And I know that people’s intentions are great. They’re going, Hey, I’ve seen this work for another person, but once again, I had to. Focus on what I felt I needed to do.

And, and I could always change my mind. You know, I could’ve done chemotherapy for two months and said, heck no, I’m not doing this anymore. I’m going to go to this approach or I’m going to do this retreat, or I’m going to take this medication. And so for those of you that are going through it, it’s okay to put some boundaries in place and to politely tell people.

Thank you. But no, thank you. And I had to do that with some people along the way and. And it was to protect the relationship because I knew that their heart was in the right place, but I was not in a place to receive that information. So that was a big one for me. And then gosh, the other, the other like big takeaway for me is one that I’m not in control.

But to share, to bring people along in the journey with you, because. There were so many people along the way that, you know, once again, like I’ve never experienced cancer before, I didn’t know what to expect. And so I really tried to educate people along the way and just share my experience. And I’ve had so many people tell me that by sharing, it helps them to love someone else and they knew that was going through it.

And so I think there’s so much power in sharing, whatever that looks like for you. Let people in and. Share the journey because it’s very hard and it can be very isolating and by sharing it, it helps cut down the isolation where when you’re going through something like nobody else could relate to me.

 But I found a couple people that had experienced treatment recently and I would, they were like on as a speed dial, still exists. Everyone is on speed dial, but I would, I had them there with the first one. I would text them, I would say, Hey. I need your help. I’m feeling really discouraged by this. How did you handle it?

And that person will respond back to me or we would get on the phone and talk. And so finding someone that’s gone before you and has walked, it doesn’t have to be the same form of cancer. It doesn’t have to be, you know, the most recent person that you’ve you’ve encountered, but find someone That has has walked that journey because it makes you not feel very, not feel as alone and can bring so much comfort.

There’s so many things that I learned from. The person that I reached out to that moved me quicker along in the healing process, because she taught me what took her a long time to learn. And I was able to quickly, you know, move past grieving or move past hurt or sadness, you know, some of the emotions that come with it along the way.

So those are some big, big takeaways for me. They really 

are. It could be different for different people. So there’s no, it’s not like if you’re listening to this and you’re not the one going through it, you’re trying to help a friend. Feel free to share the episode, but for you to go to them and be like, well, I heard from Courtney and this is what she said.

That’s not going to help them. That’s not, they’re not, you can’t push somebody through this process. They really have to want to, like, you wanted to glean from a friend, you were ready to do that. Cancer’s really about meeting somebody where they are. 

Yup. It very much is an every everyone’s going to look different.

So what’s helpful for me might look different for the next person. But, you know, as someone, as a, as a friend that, or a family member that you’re walking through, someone that you love, that’s going through cancer physically just being there for them and. It just goes such a long way. There were times when I would just ask someone to come over and sit with me because I was just so sad and overwhelmed and I knew that being alone, wasn’t going to be helpful for me.

 But that also required me to be vulnerable. It required me to show weakness in front of this person. And so, and that’s, that may not be where you’re at and that’s okay. But you know, for those that are walking alongside someone, you know, just be consistent with them. And yeah. Don’t be offended if they, if they aren’t as responsive as they normally are, because they’re going through a battle, you know, it really is a battle.

And there were, yeah, there were times when I would just, you know, want to shut people out but be consistent for that person. And, if there ever comes a point where you feel like they’re not they’re not taking care of themselves you know, Keep caring for them. And being that consistent person and they will, they will, they will reach out when they’re ready.

[00:25:43] Cassandra: That’s beautiful, Courtney. Thank you. Thank you so much for meeting with us today and for sharing your personal story and just giving so much advice to those listening. I’m thankful for you and for your time. Thank you see when Brittany told me about her cancer journey, one thing was very clear to me. I even mentioned it many times because it’s so important.

Courtney knows who she is, not in a stuck unteachable way, but in a way that allowed her to create a safe space for herself. If I can encourage you in anything, it will always be to need and know yourself and others. And Courtney really nails that in a way that you. As a listener. Thank you for making Courtney needed a note.

The best way to let me know you enjoy this episode is to leave a review for more information about this episode or to read Courtney’s blog, click the link in the show notes until you need me next time. Bye.

What Happens When You Actually Have Anxiety And Cancer?

Anxiety and Cancer

Sometimes those of us with anxiety think we have cancer. And then sometimes we actually do. And sometimes it makes the anxiety worse. Anxiety and cancer. I see a lot of learning opportunities here.

Today I’m introducing you to Courtney, who will share about her self-talk as she worked through some discomfort in her body, through her diagnosis, and shares about the cancer journey. This is episode ONE of TWO — Next week Courtney will give advice for how to get the right support for yourself as a patient and how to support someone through their cancer journey–what do they really need?
The transcript and resources for this episode can be found below.

Subject Resources

Courtney’s blog

American Cancer Society

Transcript

Cassandra: [00:00:00] Hey friend, it’s Cassandra, and this is needed and known the podcast where we discover how to transform average moments into a great life by learning, growing, and becoming better humans together. I interview amazing people who have improved their communication relationships and perspectives in unique cancer.

The dread that word alone brings, but why, what does it mean? Whether you or someone you love has cancer or like me, you’re just wished someone would spell it out on this episode. And the next I’m introducing you to Courtney. What I love so much about Courtney she’s self-aware and she shares in detail how she responded to her body emotional needs and about how cancer impacted her anxiety.

And she tells us the details about her cancer experience and the next week’s episode. She’ll continue her story and share more about her support system. 

Hey Courtney, 

Courtney: [00:00:57] Hey, Cassandra.

Cassandra: [00:00:58] Thank you so much for joining us today. I  and I’ve been following your stories since the beginning, and I’ve known you since before that.

And so I’m so thankful to you for sharing this. If anybody has read the name to this episode, then they’ll know you had cancer. What were there any signs ahead of time that this was happening? 

There were signs. I don’t know if I recognize the signs and I will say that. Form of cancer is going to look a little different when it comes to science.

So I can only speak to mine.  But with that, with that said, I experienced  Tightness in my stomach, which I was secretly hoping was just that I was getting really great six pack apps. And I, I learned later on that, that’s not what that was, but I got tightness in my stomach. And so when I would ever work out and do certain moves where I’m laying on my stomach, maybe it’s a Cobra position or a few other ones.

I would notice that it was uncomfortable. So it was really just discovered. And that lasted for probably eight or nine months. I didn’t think much of it. I just assumed. Okay, well, you know, there’s just some sensitivity there.  Then I experienced back pain and I thought that was just due to, you know, working, working out a little too hard.

So I went to physical therapy  and really, so it was like back pain, stomach pain, and. Other than that, I didn’t have a ton of, of symptoms at the time.  But I decided to go to the doctor just to figure out what was going on with my stomach.  I was feeling kind of in my  more in my esophagus area too.

 When I would have increased stress, I noticed more sensitivity. So I was curious if there was, you know, a hernia or something, very simple going on  and come to find out, you know, it ended up being cancer.  It was pretty minimal. I mean, there was pain, there was discomfort, but it wasn’t excruciating.

Gotcha. It sounds like, so you said tightness. So when I think of that, I literally thought of anxiety off the bat. So then that makes every listener, I would assume who has anxiety is now like, oh my gosh, what is happening to my body?  And so would, does everybody need to run out and get tested for cancer or, 

Courtney: [00:03:11] yeah, don’t recommend that I have struggled with anxiety over the years, and this did feel different than that to me.

But with, with, as a person who, who tends to be a little bit more anxious and very in tune with my body, I definitely knew something was wrong, but I really. Trying not to go the route of like, oh, well it must be cancer.  Which is very easy for my type of personality to do, to go to worst case scenario.

 But yeah, I would say if you’re, if you’re continuously experiencing some discomfort, it never hurts to go to your primary doctor. And that’s exactly what I did.  So that was kind of what started the testing for me. 

Cassandra: [00:03:48] So how did that go? So you go see the doctor, what kind of tests do you do? 

Courtney: [00:03:54] So for her, she said it could have been a hernia or a pulled muscle in my abdomen.

So she said, why don’t we just roll things out and get you a ultrasound? And so I went and did an ultrasound, which I was cracking up. Cause I was like, man, I was really thinking the first time I do an ultrasound will be because I’m pregnant and it’s exciting. And here I am looking for something that’s wrong.

So  definitely.  A little twist different than what I was hoping for. So I did an ultrasound that came back and it showed that there were some abnormalities. And so my doctor said, “All right, well, let’s get you a abdominal CT  cat scan.” So I went and got that. And then that came back and they noticed some swollen lymph nodes.

And at that point that’s really when the concern started for me.  Of course I was nervous up until that point, but I was kind of trying to rule out anything bad  because that doesn’t lead me anywhere. Positive. So once that one came back, she said, there’s swollen lymph nodes. We’re going to do another CT.

We’re going to go do it a chest CT. So the way the CT works is you only, they only take a portion of your body. It’s not a full scan. And so they needed to do a scan of my upper body to see if the small lymph nodes continued. And so that was the first indicator for me that something might be wrong. Cause she said, if that comes back and it ends up being.

More swollen lymph nodes than we’re going to need to biopsy. And when I heard the word biopsy, I was like, oh no, I know what this means. I remember exactly where I was when I got the phone call. And so I was like, okay, I’m gonna take it one step at a time. So I got my abdominal, I had my abdominal, I got my chest.

And then they came back and said, yup, you have more swollen lymph nodes. And at that point I started researching. I was like, okay, what is small lymph nodes? What type of cancer could this be? And ended up finding out that it could be lymphoma.  And that was the primary one that I, that I noticed when I was researching.

 And then they, they did the that second CT and then they’re like, okay, now we need to biopsy. So then I went and had a biopsy done and that took about a week before I got the results back. And that’s when it was. It was conclusive that you have  you ha you know, that I had cancer. And what type 

Cassandra: [00:06:07] of cancer did you have?

Courtney: [00:06:09] So when the doctor, the doctor called me, cause I was living at a state and I was trying to deal with some logistics on things. She called me. And she said, you have non-Hodgkin’s follicular lymphoma. And I was like non wet. That’s a really big, those are a lot of big words. I’ve never heard of this before.

Lymphoma is essentially what I have, but there’s Hodgkin’s lymphoma and non-Hodgkin’s  so mine was non-Hodgkin’s follicular lymphoma. And at the time they weren’t able to categorize.  The stage of cancer.  But she did say I had a lower, a lower grade. So meaning that it was slower growing form of cancer, which is a good sign, still cancer, nonetheless.

But  so then I had to get additional testing, so I had to get. A pet scan, blood work and a bone marrow biopsy. And at that point  I met with the oncologist and found out it was stage four cancer, which when I hear stage four, I instantly think worst case scenario terminal.  And so. It was a little bit of a shock, you know, when I got that news.

 And I can explain a little bit more as to there’s different staging to cancers. And so I can only speak to lymphoma the non-Hodgkin’s lymphoma.  If you stage four means that it’s it’s above and below  your, your waistline.  And because. I had swollen lymph nodes in my groin area and my abdomen and my armpit and my chest.

 It was in multiple areas. And so that’s what categorized it as a stage four.  Thankfully my form of cancer is.  It’s not curable, but it is treatable.  And so that was kind of my saving grace, as I was going into this process, 

Cassandra: [00:07:53] things you don’t know until you get cancer. Am I right? Like, you know, that they’re stage 1, 2, 3, and four, and you know, the forest, not the goodest and one is okay.

And like, but you don’t know what any of those things mean. And so I really appreciate you spelling that out for us. What does that mean? I don’t know what stage four means. All I know is that’s not good. And how is she still here? So that, and it also gives hope to people who are listening, who are like, this just happened to exactly, to me.

How do I. 

Courtney: [00:08:21] Yeah, stage four is definitely a  you know  a punch in the stomach when you hear it.  Just given, you know, I have a lot of people in my life that have  battled cancer in the past.  Those very close to me and my dad being one of them. And my dad unfortunately  had a more aggressive form of cancer.

He had a soft geo cancer and  did treatment and surgery.  Unfortunately his metastasized and, you know, resulted in him passing from cancer. So  I, you know, I, when I heard stage four, it was, it was something that I had to really  Really focused on the fact that that was my dad’s story and that my stories, my story can look different.

That just because we both had stage four does not mean that my, the end of my story is going to result in what his was.  And that’s, that’s probably one of my biggest lessons learned was not to compare. My journey with anybody else’s, every diagnosis is different. Every treatment’s different side-effects are different.

So, you know, for those of you listening, I think what’s key to remember is yes, you can glean and you can learn from others through the process, but also your story is yours and trying not to compare and being like, well there, you know, this ended poorly for them or they had a terrible experience. You have to walk through your through your  journey in that 

Cassandra: [00:09:47] That’s really beautiful Courtney, and that’s something that whatever you’re battling, whatever you’re going through, like, it’s a really good reminder.

How do you get an oncologist?  We’ve gone really deep and we’re going to go rural shallow, but yeah. I’m curious in more of the logistical side for this is how do you pick an oncologist or did you just happen to get lucky? 

Courtney: [00:10:09] Yeah, mine was a little unique because we were moving. So we’re in San Diego, but we were living in Michigan at the time. So I was dealing with my primary, who was out here and we were moving back to California. So it was, it was a little challenging. But my doctor, my primary, doctor’s the one that really helped us walk through each step.

And so, and I would just ask a lot of questions and say, okay, so who’s calling me next and who am I waiting to hear from? And a lot of times,  I was really waiting for them to call, to make appointments. And so that was helpful for me because I wasn’t having to seek out a lot.

Scheduling that they were, they would say, Hey, we’re going to process this. And someone from radiology will call you or someone from oncology we’ll reach out to you and schedule it. So I didn’t, I didn’t pick my oncologist. There was I think two or three at the, at sharp  near our house. And so we got assigned an oncologist and  And that was kind of the, the step.

I think it depends on the type of cancer you have. There are certain, I know people that have a certain type of cancer and they, they seek out someone that really specializes in that non-Hodgkin’s follicular lymphoma is not  a rare cancer.   It’s fairly treatable and there’s a decent survival rate.

And so I wasn’t focused as much. And really at the time there’s so much coming at you that  it, it can be overwhelming in terms of making decisions. So  I’ve seen it done a number of ways with, with other people that they’ve gone and they want to, they want to meet with the best of the best, and that, that works great for them.

I didn’t have that, that urgency or.  Like a conviction to have to go and research a bunch of  different doctors.  I had  going into it really been praying about. What I would do when it comes to treatment, because I saw my dad go through chemo and radiation and I saw how hard it was on him.

And I told myself, I would never, if I ever got cancer, I would never do that. And here we are, you know,  10 years after my dad. I’m in the same in the same spot and trying to make these decisions. So I really spent some time personally praying about it and go and asking God, if I’m, if I do treatment, what treatment should I be doing?

And I felt really peaceful about chemotherapy. And so when I met with the oncologist and I will answer your question of what to look for, but when I met with him, He told me that the best form of treatment was going to be chemotherapy. And so that put me at ease to know that, okay, I was on the right path.

And  and looking back, some things that I would suggest as if you’re someone that fi found out that you are diagnosed with cancer. Some things that I would look for with the doctor is. You have to know your personality types. So for some people they prefer like giving the facts, just tell it to me straight.

Some people prefer a softer approach and want more of a relational aspect or empathy. And  what I learned was I, I, if I were to ever have to go that route again  I would probably find a different doctor because my doctor was a little bit more   even keel and. Not very empathetic. And,  that was challenging for me.

I’m about halfway through, I thought about switching doctors, but I wanted to just finish my treatment that way. So I would say, look for someone that you knowing your personality, what’s gonna, what’s gonna fit best for you.  Also someone that you feel comfortable asking questions around. If you, if you don’t feel like you can ask them questions, then you need to find somebody else because there’s going to be a lot along the way that you.

You need to have those open conversations.  Someone that’s accessible is, is also important and what’s tricky is you don’t know that going into it. So you’re not going to know how accessible they are until you’re a couple appointments in, and you’re trying to, you know, trying to find some time if you’re, if you’re an existing treatment, if you’re an existing patient, that’s getting treatment, they usually push you to the top of the of the chain. So for me right now, being on the other side of it  I’ve noticed a lower, you know, response time on things. And so  those are probably the primary things that I would look for with the doctor.  I didn’t do a second opinion. Maybe, you know, maybe I should have, but I felt pretty peaceful about the treatment plan.

And I really liked the facility and I, there was just a lot of things that for me, made sense to continue going down that path. 

Cassandra: [00:14:34] What I hear you saying though, is that  if you have any concerns about your doctor or you’re not comfortable, it’s really important to, to get that second opinion. It sounds like you didn’t need the second opinion because you were comfortable and.

I also loved that you talked on knowing yourself and knowing your personality. And if you don’t feel like, you know, how you like receiving information, the people near, you know, the people near, you know, how you respond to bad dues or how, who you’re most comfortable around. And that’s not necessarily what matches you because  your doctor.

Sounds like, it would be okay for me, but I do need, I need a little bit of empathy. I’m a very empathetic person, but I cannot work with very empathetic people because I’m like, yeah, it’s too much feelings in here. 

Courtney: [00:15:19] There’s too. There’s too much going on. Yeah. 

Cassandra: [00:15:21] Much factual is like  I need a little bit of love.

I need a little bit of TLC. 

Courtney: [00:15:28] What’s funny is when we went to meet him.  I went with my husband and my mom. And so when went to my doctor came in. So the first time you met him, he introduced himself and said, hi to my mom and said, how did my husband, and then turned to me and introduced himself to me. And then he said, oh, is this your mom and your dad?

And I should have known then that we should have probably just found a new oncologist because my husband goes, I’m her husband and. He was like, oh, I’m so sorry 

Cassandra: [00:15:56] for the record. Courtney’s husband is not older. Like there’s not a less significant aid. 

Courtney: [00:16:02] There’s a four, there’s a four year gap 

Cassandra: [00:16:04] and he doesn’t look older.

Courtney: [00:16:05] No, he’s got a little more salt and pepper  than the average, maybe 40 year olds. But yeah, no way. Was he 25 years older in my mom’s age. And so  we had a good laugh, but later on in the appointment,  he kept trying to. To fix it and say, well, you know, your mom just looks so young and it’s like, we just stop, stop you don’t, you know, you don’t need to go there.

 Looking back, we were like, man, we should’ve known right from the get-go, you know, you got it, got to look for someone different. But you know, as, as the treatments went on, I did have to meet with a couple of their doctors throughout when he was  on vacation or wasn’t available. And that was also another sign for me of like, wow, I really felt more comfortable with this person than I did that person.

So  like I said, I carried out my treatment plan, but. You know, if I were to need more care in the future, I would look elsewhere. So I would just encourage those of you. Don’t this is such a crucial part. Of the process and you want to feel supported and heard and whatever it is that you’re needing.

So don’t settle. This is really important. 

Cassandra: [00:17:09] What happened to your body during treatment, 

Courtney: [00:17:11] What didn’t happen to my body during treatment.   Every form of medicine will have different side effects. So I was grateful that my medication. And I’ll probably butcher how to pronounce them, but I had  Benda bendamustine or bendamustine and Rituxan.

And so   for any of you listening, if,  you can relate to those, to those forms of drugs  My side effects did not include hair loss. So I was very fortunate as a female, not to have to go that route.  But I did experience  fatigue and loss of appetite and nausea and anxiety and depression.

 And I would say the anxiety and depression is something that I’ve dealt with over the years aside from cancer. So I think it really just was heightened  during the process.  But I do think that the medicine problem. Kicked that up a notch. 

Cassandra: [00:18:02] The fact is Courtney has way more to share than we shared with you today.

Today, we focused on how Courtney got diagnosed and took you through the beginning stages of her treatment. Next week, we’ll finish up her treatment and she will give you some awesome tips on self care and for your support system, as well as create an awesome care basket. As always, you can find more information at neededandknown.com or in the show notes.

Thank you for helping Courtney to feel needed and known until you need me next time. Bye.

How to Get Muddy with Multiple Sclerosis at 21

How do I support my loved one through Multiple Sclerosis?

On this episode, I’m introducing you to my friend Allison. Allison is literally a brilliant beauty queen and her husband Shane is truly her Prince Charming. Shane was diagnosed with Multiple Sclerosis unexpectedly and they made huge changes in their lives to keep up. Nearly 10 years later, Allison shares the impact the diagnosis and their relationships have had on their lives. We all know that the struggle with an illness or disease can potentially suck the joy out of life. But not for Allison, Shane and Multiple Sclerosis. Hear how they fight the MS blues and how you can support your loved ones too. 

The transcript and resources for this episode can be found below.
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Resources and More Information about Multiple Sclerosis

National MS Society

Transcript

How Allison Met Shane

…Sometimes dreams are good and they actually come true!

Allison on meeting her husband

[00:00:00] Cassandra: Hey friend, it’s Cassandra, and this is needed and known the podcast where we discover how to transform average moments into a great life by learning, growing, and becoming better humans together. I interview amazing people who have improved their communication, relationships and perspectives in unique ways in each episode.

[00:00:42] Hey Alison, how are you? 

[00:00:45] Allison: Good. How are you doing guys? 

[00:00:48] Cassandra: [00:00:48] I am so glad that you joined us today to talk about multiple sclerosis. I wanted to talk about your journey because I, I think that your story is it’s so compelling.  And it’s one of those this could never happen to me and then it does. And what do I do?

[00:01:04] So I feel like you have so much to share.  So we’re just going to dive right in  Tell me about growing up? Like, did you have like those quintessential little girl wedding, mommy dreams? 

[00:01:17] Allison: [00:01:17] I absolutely did. I have always been obsessed with Disney movies and the Disney princesses that find their prince charming. And honestly, I still feel that way. I think it’s good to have those kinds of dreams and confession time. I even prayed as a child that my husband would be tall and athletic and have two eyes and blondish brownish hair. And that describes Shane. So, you know, sometimes dreams are good and they actually come true!

[00:01:52] Cassandra: Oh my gosh, that’s perfect. Literally, as you’re describing it, I’m like, “Oh my gosh, that is literally Shane.” That’s fantastic. So how did you guys meet? 

[00:02:02] Allison: So we actually went to the school together. He moved to Edmond, OK from Kansas City, Missouri, and my best friend at the time actually went to school with him in Kansas city before he moved here.

[00:02:16] And yeah, she told me, she said, Alison Shane treats girls so nicely. He is like a prince. He’s the best you thought? Well, I mean, why not? Let’s go talk to him. So I just started to kind of flirt with him in class and he would walk me to my classes. And within a couple of weeks we felt like we were going to be together forever, which is funny looking back on it because I’m like, I hardly knew what I wanted for lunch.

[00:02:49] Right. You really do now? Well, I can barely pick lunch today, but 15 and a half. I decided that Shane [00:03:00] would be my husband. And here we are. 16 years later, still. Going strong. So some things you can get, right.

[00:03:09] Cassandra: [00:03:09] Even as a teenager, not everybody, but in your story that worked out so well. And so I love that. I love that your sweet, sweet story, because literally you’ve spent half your lives together over half your lives now.

[00:03:22] Allison: [00:03:22] Yeah.

6 Months of Marital Bliss and Two 21st Birthdays

I think no matter what age you are, it’s really hard to feel like a piece of what you thought your future would look like is gone, and you kind of lose your innocence. And to a large extent, it’s hard to be around your friends who are planning to go to the next football game while you’re talking about really serious treatments for a disease.

[00:03:25] Cassandra: [00:03:25] But things didn’t go according to plan it. Wasn’t a complete fairy tale.  What happened?

[00:03:30] Allison: [00:03:30] Yeah. So we got married July 17th of 2010 and in March 12th of 2011 Shane was diagnosed with multiple sclerosis and that was absolutely something that we did not plan for. We did not wish for hope for could not have imagined.

[00:03:55] It just completely threw us off course, to be honest. I mean, we were. 20 when we got married and 21 when he was diagnosed. And I think no matter what age you are, it’s really hard to feel like a piece of what you thought your future would look like is gone, and you kind of lose your innocence. And to a large extent, it’s hard to be around your friends who are planning to go to the next football game while you’re talking about really serious treatments for a disease.

[00:04:26] And it just. Kind of disconnects you from a lot of people. So that was certainly not something that we had planned for as kids.  

That Night

I don’t want to go anywhere. Like you can’t even touch my body. It’s hurting so badly.

Allison remembering Shane’s pain the night he felt the first

[00:04:36] Cassandra: [00:04:36] Can you tell us what you noticed? Like how did you get to the diagnosis? 

[00:04:41] Allison: [00:04:41] Absolutely. So Shane actually woke up in the middle of the night and he had the worst migraine of his life. His body was hurting and then the left side of his face and broke, went completely numb. 

[00:04:56] And I actually remember kind of rolling over in bed and not feeling him next to me. And I just instinctively knew that something was wrong. So I get up and I found him on the bathroom floor and he just kept saying, I don’t want to move.

[00:05:11] I don’t want to go anywhere. Like you can’t even touch my body. It’s hurting so badly. Yeah. So in my mind, I kept thinking. Maybe it’s a migraine, maybe, you know, it’s a small stroke. I just honestly didn’t have a clue what could cause all these symptoms to happen at the same time. So I got him back into bed and the following day he went to his primary care doctor and they were like, oh yeah, this is a really severe migraine.

[00:05:41] That’s why you have all this numbness and tingling. And we’ll put you on some blood pressure medication, because hopefully that will get rid of migraine and yeah. And so nothing got better. In fact, it kind of got worse. And so my grandmother actually passed away later that [00:06:00] week and I was supposed to travel to little rock Arkansas for her funeral.

[00:06:04] I am the designated speech giver in my family. So when someone passes away, I always right. The eulogy and give it for the family, which is an honor. But that week I was just so distracted with Shane’s health. So we decided we would just meet at mercy hospital. I was on my way to little rock and I thought, you know what?

[00:06:26] I don’t really want to leave town until I know that Shane’s okay. So I called him and I said, just meet me at mercy. This was about noon and eight o’clock that night. They had him diagnosed with Ms. Which seems crazy because that’s eight hours. It’s honestly super fast because most people go for years with symptoms and no diagnosis.

[00:06:49] Cassandra: [00:06:49] Oh, wow. And you hear that too, right? Like I knew something was wrong or sometimes there’s the opposite of like, no, it’s really just a bad migraine. And so that whole, like trying to [00:07:00] figure it out and I feel like the support of a spouse can really make the difference or friends even being like, this seems odd.

[00:07:06] Something’s not right. So. I’m so glad that you were there for him. You, you really are that friend though, too. That’s like, I’m there, you need something I’m there. And so I can imagine for your heart that there’s no way you could’ve gone to little rock without knowing something’s not, something’s not right.

[00:07:22] Allison: [00:07:22] So yeah. Yeah, exactly. That it would really just ate away at me. And I thought, well, best case scenario, we rule out everything and I can go comfortably. And then instead it was. This horrible diagnosis. And I had to get in the car at eight o’clock and drive the five and a half hours to little rock. So that was certainly a very difficult trip to make, but, and, you know, Shane wanted me to be there for my family and it made sense.

[00:07:48] So we trekked on board 

What is Multiple Sclerosis?

…if you’ve ever seen a rat or a rabbit to through a wire and you sort of have this frayed wire on the inside, and you can see where the animals eaten away at the coating around the wire.

Allison describing MS

[00:07:51] Cassandra: [00:07:51] Ms and all. So for those of us that don’t know, can you can use tell us what Ms is? What is multiple sclerosis? 

[00:08:00] [00:08:00] Allison: [00:08:00] Yeah, absolutely. So it is a progressively degenerative auto-immune disease. Basically what happens is your central nervous system identifies good parts of your body, but it sees it as bad.

[00:08:15] So you have this mileage sheet, it’s like a fatty tissue that sits around all of the synopsis in your brain. And those Synopsys are what help us make connections between. Our brain and our body parts. And what Shane’s body does is it sees those that fatty cell, the tissue around the synopsis, and it actually eats it away when it attacks his body.

[00:08:43] And  it may look at a healthy T cell and decide that it’s unhealthy or that it’s a virus or something. And it just attacks his body. So basically what ends up happening is you have a broken connection everywhere that there’s a scar. So multiple [00:09:00] sclerosis, many scars is kind of how I describe it. And if you can imagine if you’ve ever seen a rat or a rabbit to through a wire and you sort of have this frayed wire on the inside, and you can see where the animals eaten away at the coating around the wire.

[00:09:20] That’s what Shane’s body does. So the next time that an electrical current goes through that wire, it may not ever make it to the end point because it stops where it’s broken. So Shane’s body does that. Let’s say his brain tells him I want to pick up that cup. Well, if it goes through a broken connection, he may go to pick it up and then just drop it.

[00:09:42] So it’s, it’s pretty crazy, and it it’s different for everybody, but for the most part, that’s kind of what’s going on internally that causes permanent damage common at all, and people in their twenties. I mean, he’s 21 getting this diagnosis. How is that? [00:10:00] The, I knew a woman who had Ms and she was in her forties and I was like, oh, that must be something that, I mean, It’s not old by my standards at this age, but you know, when you’re in high school, college, you’re like that’s for older people.

[00:10:12] So do you happen to know the statistics on that? 

[00:10:17] No. I think most people are diagnosed mid thirties to early forties. I think increasingly we’ve seen younger people being diagnosed because we now know more about the disease and we were able to identify symptoms, but even with. That taken into account. I do think generally mid thirties to early forties or mid forties would be kind of a more normal diagnosis.

[00:10:43] And it actually predominantly impacts women. It’s about an 80 20 split. So males tend to have the more aggressive forms of Ms which hearing that was not super pleasant, you know? Cause you’re thinking. Well, how rare is it that Shane has it? Well, it’s already super rare. And then from being young, it was kind of rare on rare.

[00:11:07] So, you know, you just have to accept those things and move forward as best as you can. 

Diagnosis

We had to send his results to another hospital because we were really shocked by what we saw. And we didn’t want to tell you the wrong thing.

Allison sharing the doctors’ process

[00:11:13] Cassandra: [00:11:13] That goes back to your point of getting diagnosed within eight hours was actually huge eight hours. The second time. We’re not going to count the GP (General Physician), but the second time, because you, you went back in and you got a diagnosis, which is not the, kind of the way that most of those tests would have gone, they would have maybe pushed that out. So that just affirms your point of like, we got very fortunate to get diagnosed at eight hours. 

[00:11:39] Allison: [00:11:39] We did. And I honestly wish I knew who the ER physician was that came out to talk to us because. I wasn’t really in a good place. And I kept asking, why is it taking so long? I don’t understand what’s going on.

[00:11:53] And one of the radiologists came out and said, I’m so sorry. We had to send his results to another hospital because we were really shocked by what we saw. And we didn’t want to tell you the wrong thing. And now I’m so grateful for that, that they took all that extra time in the moment. All I could think about was, I mean, there’s nothing wrong, so why are we still here?

[00:12:14] And obviously that wasn’t the case. So I wish I could, I might have to figure out how it’s tagged with that physician and just apologize because then my head space was not good in the ER.

Future Changes

my tax returns showed I made a whopping $11,000 that year, and that was with working full time.

Allison, realizing that she would need a career change to support her family

[00:12:27] Cassandra: [00:12:27] I think that really demonstrates your heart of like still having compassion for that person. What is going through your mind about your lives and your future and your career paths where you maybe not in that moment, but shortly thereafter, you have to be thinking, what does this mean for us? 

[00:12:56] Allison: [00:12:56] Yeah, absolutely. So at the time that Shane was diagnosed, I was working as a teacher’s assistant.

[00:13:04] We’re a special needs child at a local elementary school. And my tax returns showed I made a whopping $11,000 that year, and that was with working full time. So I quickly realized that teaching was not going to cut it. And even if I had a classroom to myself, I still wasn’t going to make enough to provide for both of us.

[00:13:28] So I switched my major, actually just majored in. Political science because I thought it was interesting. And I thought I could tolerate the classes and get out as fast as humanly possible. So I did. And after I graduated, I applied for a ton of jobs. I mean, I was just picking up virtually any kind of job that I could think of.

[00:13:50] And of course I got zero callbacks and felt very depressed, very discouraged. Really hopeless because I thought here I am at this point in my life where I’m supposed to be providing security for my family. And I can’t even get a local nonprofit that requires half or high school diploma to call me back, you know?

[00:14:10] So I felt, I felt extremely discouraged and I just kept praying like, Lord, where am I supposed to go? I don’t, I don’t understand what you’re doing, know what I have to do. And I don’t know how to get there. And during a prayer, I felt led to apply for law school, which is hilarious because honestly, I don’t even tell people that I’m a lawyer because I don’t think it’s significant.

[00:14:36] I’d rather just talk about life and things that people have walked through. I don’t ascribe any certain special significance because I. Happened to pass the bar exam 

[00:14:49] Cassandra: [00:14:49] You’re not a typical lawyer. I think of you more like a Bob Goff, lawyer, that’s not relevant to anything about you. Like, it’s just kind of a side note. I’ve met a lot of lawyers and I would totally agree with that. I wouldn’t lead with that. I wouldn’t even include it unless it became necessary. And I think that’s kind of how you approach it too. 

[00:15:07] Allison: [00:15:07] Yeah, exactly. Yeah. So I was totally thrown off by that, but I, I mean, I had been like in the fetal position on the floor crying, very discouraged and I literally picked myself up and applied for law school. And when I got into it, I understood why God led me there because my brain just worked that way. He had just made me to be very analytical and I had done a lot of pageants. And so I was very practiced on, you know, how to have good, clear, concise conversation. And. Nice writing.

So it kind of all started to come together and  it just, it really was one of the hardest things I’ve ever had to do, but it also was such an amazing blessing because the entire time I thought about, you know, I’m not just here for a career change, I’m really here to [00:16:00] hopefully make a difference in Shane’s life and to show him how much I care and how much I want to pursue the best for our family.

[00:16:08] And then on top of that, just. Recognizing that all things are possible with God. And I may not feel capable of walking through it, but somehow he led me through it. And I’m still here ticking away. 

Breaking Stereotypes and Silent Diseases

[00:16:21] Cassandra: [00:16:21] I think that’s. That’s a tough, you handle that with such grace, because it really is. It’s a career move that I’m sure I know Shane well enough to know that he wasn’t like you’re going to have to buck up.

[00:16:32] Alison, because I can’t, I know that that’s something that you did, that you were like, this is something that I can do to make a difference in our lives.  But you still handled it with such grace. And I think that that’s so inspirational to anyone who’s going through. Something that they’re like, I don’t have control over this.

[00:16:49] And you’re like, I don’t like a lot of it is just is what it is and I have to roll with it.  But I still love Shane and he’s still my prince. So I love that so much.  I’ve had to make changes for work and I know. When I met Shane, I was shocked because just so anybody listening can get an image in their head.

[00:17:11] He is a prince charming. Like he is, he’s just your bow 100%.  And he’s super like super in shape, super muscular, like a bodybuilder type almost. And, and I’m not a gym person. Though I aspire.  And there’s room for improvement. He, he definitely is like your typical quote gym person.  She didn’t look sick.

Silent Diseases

Really taking a step back and recognizing that someone who has a handicap decal on their car may walk into Target looking completely healthy and normal, but they may be exhausted when they’re done and they may really need that close parking space.

Allison sharing how to give grace

[00:17:35] Can you talk about that? What are other stereotypes that I’m or somebody listening might have  that you want to make sure that you change? 

[00:17:45] Allison: [00:17:45] Yeah, absolutely. That’s definitely, probably the biggest one that we encounter when Shane tells someone that he has MS, or like, “But you don’t look sick and you’re in shape and you have fun and you have joy in you’re fun to be around, you know, it’s kind of like, how could that possibly be?”

[00:18:04] And so, yeah, definitely the first one is just that. Sometimes people have silent diseases. You know, they have conditions where they may look completely healthy, but internally they’re fighting a battle that people can’t see. And I think that’s true of all of us, you know, even if health is not it, we all have battles that other people can’t see.

[00:18:25] So just. Really taking a step back and recognizing that someone who has a handicap decal on their car may walk into Target looking completely healthy and normal, but they may be exhausted when they’re done and they may really need that close parking space. And then another thing too, that I’ve encountered pretty frequently is that  people have a tendency to think that symptoms are exaggerated or there’s no possible way that someone could still feel bad after all this time.

[00:18:55] And, you know, Shane frequently comes home and sleeps during the middle of the day. You know, he’ll get up at seven o’clock in the morning. And by two he needs a two or three hour nap. And it’s hard for other young people to understand because they just think it doesn’t make any sense. How is it possible lies to you to take your nav to survive?

[00:19:17] Politically. Yeah. So I would just encourage people that, you know, if you know someone who does have a condition, that’s kind of hard to understand, just believe them. When they say that they’re tired or they can’t make the birthday party, they can’t stay out late. Or maybe they need some extra time to get ready.

[00:19:34] There’s things like that. That aren’t necessarily obvious. From the get go, I think are just important to keep in the back of our mind. 

Symptoms and the Suck

…What I’ve recognized is I can’t control what happens, but I can control how I respond.

Allison on the symptoms

[00:19:42] Cassandra: [00:19:42] It sounds like what you’re describing is because his body’s constantly fighting itself. He is experiencing symptoms that we might experience. If we had a terrible flu or we were super sick or something was happening, we just feel fatigued and tired and our temperature is off. I know that’s important to him.  And, but he feels that way all the time. 

[00:20:05] Allison: [00:20:05] Yeah, exactly. So when it’s really hot outside, he’ll sleep for 10 to 15 hours during the middle of the day. And the heat just completely fatigues him. And then sometimes his body will just decide that he doesn’t need his left leg today.

[00:20:23] So his leg will go numb or it might be  in a lot of pain. And so every day is just something different and he don’t really know what to expect. But what I have found is that there’s kind of some freedom in that because I used to live under the illusion that if I just tried hard enough, I could control what was going on around me.

[00:20:45] And what I’ve recognized is I can’t control what happens, but I can control how I respond. And so just making the conscious choice to say, All right. We don’t know if you’re going to walk tomorrow. So why don’t we just live today with as much joy as we possibly can and really just pursuing that every single day surrender, like we don’t know what tomorrow holds nobody does.

[00:21:11] We just don’t have the luxury of pretending that pretending that we do. And so that, that kind of perspective shift I think is, is really important.  When you’re walking through a grieving season or, or something difficult, it’s just recognizing, you know, what, we can’t control it. And sometimes there’s a lot of freedom in that when you just say, we’re just going to choose to be joyful and do the best, we can complain a little bit along the way.

[00:21:38] Cause you know, you got to do that sometimes, but not stay down, you know? Keep keep going forward. 

[00:21:45] Cassandra: [00:21:45] I love that. You’re I love that you leave the room for the complaining and the, this sucks. Like this just sucks. Yeah. Keep moving along. Like just gotta keep going on. I love that you leave room for both. And I think it’s so important because there’s a, what do they call it?

[00:22:01] Toxic positivity of like being like fake positive and  I know you don’t have room for that inside your persona at all. But  I, I love that, that you have that balance of like, it’s okay to embrace both. You could even do it within moments of each other. It’s like multitasking feelings, just shifting back and forth.

Encouraging Others From the Mud by Showing Up

“..you still have dreams to pursue. And just not, not being willing to give up on that, even in the middle of the mud and the yuck…”

[00:22:21] Allison: [00:22:21] That’s so true. Yeah, you’re right. And I think, I think a lot of times that also plays into like how comfortable people are talking to you about your struggle, because they often feel like, I don’t know how to encourage someone, who is facing paralysis. Like right now, Shane’s in the middle of a relapse and he’s doing a lot better than he was eight or nine weeks ago, but his body just went totally numb and they didn’t know if he was going to walk or recover.

[00:22:49] And so people, I think, feel like how, how do you encourage somebody like that? I don’t know what to say. So I’m just not going to say anything. And what we’ve kind of realized is [00:23:00] sometimes it’s nice to just have somebody that. Sits in the mud with you and says, this really sucks. And you’re like, yeah, it does.

[00:23:06] And let’s go get a Starbucks or let’s go to the park and take a walk or just come sit on the couch and watch movies with us. And you don’t have to have something to say, you can just be a great listener. And that’s really been the biggest blessing for us is just having people around us that are like, Yeah, it does suck.

[00:23:28] This is, this is reality. And it’s what you’re feeling is real, but together we can still move forward and you still have value and you still have a life to live. You know, you still have dreams to pursue. And just not, not being willing to give up on that, even in the middle of the mud and the yuck.

[00:23:47] Cassandra: [00:23:47] I love that “sitting in the mud with them.”

Examples of What to Do or Say

What could I ask you guys in order to get into the mud with you? 

[00:23:51] How so? I think you’ve educated us on how we can sit in the mud with somebody, but how do we, how do we even ask to sit down? [00:24:00] Like, so what would be a great question for me to ask Shane? I know he’s not doing well. What could I ask you guys in order to get into the mud with you? 

[00:24:11] Allison: [00:24:11] I think. Just sending a text message, even that just says, Hey, I’m so sorry that you’re walking through this.

[00:24:18] I’m here. If you need anything, do you want me to go get a movie for you? Or do you have something that you really like to eat all stop by and bring it over? Like, you know, Shane loves tacos, so basically you could bring any kind of taco over to the house and he would be thrilled. And just kind of making yourself available to come and hang out.

[00:24:41] And sometimes, you know, everybody’s kind of in a place where they’re just not in the mood to have conversation and that’s okay too, but what’s nice is that when Shane is ready, he goes and looks back and sees. All these messages from people who reached out to him and people [00:25:00] remember that, you know, even if in the moment they don’t take you up on your offer, they will never forget that you reached out and that you took that time to have that tough conversation or to be available for it.

[00:25:12] So really just sending a text or a phone call or a Facebook message that just makes you available. I think speaks volumes and really is a blessing for those people walking through the trial.

Story Wrap-Up

[00:25:22] Cassandra: [00:25:22] That’s awesome. I think that’s very helpful, especially for people like me who are like, but Shane looks fine, but suddenly he’s not feeling very good. Like what can I do? So it’s something practical that we’re all capable of asking is, “Gosh, I know you’re not feeling great, but I also know that you love the mocha Choco latte, whatever, let me pick you one up.” So that’s awesome. Alison, I so appreciate you spending time with me and my listeners today.  And I am thankful for you and thankful for you sharing your story.

[00:25:55] I know it’s not, it’s not an easy story. It’s not a fun story, but  I think you’ve [00:26:00] really encouraged us on how we can do better at supporting our friends with. Their struggles. So thank you. 

[00:26:09] Allison: [00:26:09] Thank you. Thank you so much. It was such a great blessing to me, just to be able to share my story and just to pour in, hopefully to somebody fart and just to be an encouragement.

[00:26:20] So thank you for giving me. Your opportunity.

[00:26:23] Cassandra: [00:26:23] You’re welcome. I’ll see you later. I don’t know about you, but this episode makes me want to sit in the mud and laugh with a friend. Thank you for being a great listener and letting Alison feel Needed and Known. Want to talk more between episodes. Follow me on Instagram @neededandknown. For more information about multiple sclerosis click here.

Until you need me next time. Bye!

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