As promised, in today’s podcast episode (Pioneering Today Podcast #411), I’m spilling the beans on the health issues I’ve been having for the past few years.
Turns out, what I thought was a damaged muscle turned out to be a tumor that was wrapping its fingers around the nerves in my neck and shoulder.
By the time you hear this, I should be happily recovering from surgery and will be sure to give you an update once I’m able.
Have a listen as I share the frustrations my family has experienced these past four months about the broken medical system (hint: they match my frustrations about the broken food system). I'm also sharing some encouragement on ways to be your own advocate.
In This Episode
- Things I have experienced when dealing with the modern medical system.
- My journey of a shoulder injury to learning it was a tumor.
- The emotions I had to face while dealing with the unknowns of what was going on.
- Why you have to be your own health advocate.
- Don't get lost in the health system.
- Learn to speak up for what you need.
- Ways to advocate for yourself.
Verse of the Week: Psalm 91:4
Azure Standard is the sponsor for this episode of the podcast. If you're a first-time customer, you can use code “Melissa10” at checkout and receive 10% off your first order of $50 or more.
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Hey, Pioneers. Welcome to episode number 411. In today's episode, I am just going to frankly be sharing with you what has been happening with me health-wise, and when this goes live, I actually will be hopefully coming home from a successful surgery to have a tumor removed from my neck and upper shoulder region.
But I want to walk through one just to be totally transparent and sharing with you what's going on. You probably won't see a couple of podcast episodes from me the next couple of weeks because I'm going to be having some recovery time. But also, not just to share with you some of that behind the scenes and what's going on, but also so that for any of you who may be experiencing some health problems right now or are dealing with the modern medical system; or if at a point in a future, you need...
Trying to find the right words, to be honest, I'm recording this right before I leave to go check into the hospital, just full transparency. But at some point, most likely, you are going to need to deal with our modern medical system, and you'll have something that comes up with your health.
I want to share things that I have known to be true from my past experience with healing, from having my upper stomach and esophagus biopsy for cancer over 12 years ago now, and that walked through the medical system, and then what has been reiterated for me these past few years with this new health problem that I'm experiencing. It's going to be valuable, I feel like, for you now, or if you have a family member who's dealing with some health problems, and also in a future state.
I'm just going to walk you through this. I have on my left shoulder that's kind of tying in a little bit to my neck here, so if you're watching this on YouTube, you actually will see me point to it. I'm going to show you the tumor where you can visually see or et cetera all those things.
If you're listening to us the old-fashioned way, I'll try to do a verbal explanation to give you a good point of view as best as possible. If you're curious and like to view things, then you can hop on over to the YouTube channel and actually see this episode. I'm recording it for you as a video.
Almost three years ago, coming this January, I had where my neck in this whole area just really swelled up. It was really, really painful. I couldn't move my neck at all. If I needed to look over my shoulder either way, it's where you're turning the whole body. There's no independent swiveling of the head on the neck.
And we were just playing a card game at my in-laws. And so it was the kids and me and my brother-in-Law and my mother and father-in-Law, and we were just all around, and it got to be where it started to hurt if I look to the player on my left, and then by the end of it, I was in a lot of pain.
Like, "I need to go take something," and I rarely take anything for pain just because most of the over the counter items have other ill effects that I feel kind of negate what relief they may give in the moment overall. But I was like, "I have got to take something." I was almost in tears. The pain level was high.
Went home, took some over the counter anti-inflammatories at that point, and in the past, I've always had a little bit of aggravation on the left side, so I'd go to the chiropractor if it started to get tight. And honestly, usually I could kind of feel... Locking up isn't quite the right word, but that's kind of what it felt like. I'd feel it coming on and I'm like, "Oh no, the muscles are going to be totally locked and I'm not going to be able to look that way and it's going to hurt."
I actually found if I could warm up the muscles and exercise, either go for a jog or do some movement, stretching, doing a Pilates workout, something like that, oftentimes if I could do it right when I first felt it starting to come on, it would loosen up the muscles and it would enable me to get on with life without it being all locked up.
But this time, I could hardly breathe. It lasted for two days, and I made a doctor's appointment. I'm like, "I don't know what's going on, but this is so painful." It was bad.
I went to my local doctor and they did an exam and she thought that I just had where the pressure points within the muscles weren't getting released, so she said, "I think you just need to go do some physical therapy," so referred me to physical therapy.
I did physical therapy for three months, and I got it to a point where I could turn my head again, I still can turn my head much further to the right than I can to the left. This is about as far as I can turn my head to the left as you're seeing it on video. I still don't have full mobility function there, but at least I could turn my head.
After the three months of physical therapy, it was just like, "Okay, well, it's manageable, it's still swollen." The swelling never went completely down, but it had went down, and I could function pretty much in normal life, so I'm like, "Okay, here we go."
I just thought I have some type of muscle injury, even though I was not in a car wreck. There was no blunt force trauma. There was nothing that I could trace it to as being an injury, other than perhaps repetitive motion on those muscles, because when I worked in pharmacies, I was a pharmacy tech for 18 years, and where the computer was in proportion to the walk-up counter where patients would come up to the counter and obviously you would verbally interact with them and then go get their prescription, it always had me turned slightly looking to the left, because I would have my computer screen here where I was entering in the prescriptions and doing the billing, and then if someone came up, I would slightly turn to the left.
And then my home computer office used to be in the little tiny nook corner of our kitchen for years, and the way I had it set up, coincidentally, was the monitor was slightly to the left, because it was a very small corner office for me to be able to have everything. The monitor of my computer was slightly to the left, so I was constantly turned slightly to the left and activating those muscles on the left side of my neck and shoulder.
I honestly thought, "Okay, well, it's probably just a slightly muscle repetitive use, chronic type injury, and this is just where it's at." Well, I'm trying to make a long story short, but to give you enough backstory there, this year at the [inaudible 00:07:01] conference that we had in June of 2023.
It really flared up. Truthfully, I'm assuming part of it was stress. It was an amazing event, and I have done a podcast episode on that, a recap talking about it and all of that, but it swelled up so bad, and it was hurting again, and that's really for me where I'm like, "Okay, I can't live with this level of pain."
And at that point, I really couldn't use my left arm and hand very much. If I used it to do more than just a few things, the pain level was so intense that I would just cry. I would sit with an ice pack on it to try to get the swelling and the pain down, and I would sit and cry, and I'm like, "Okay, it's time to figure out..." Maybe the scalene muscle, which is your muscles that run through here, maybe somehow it detached itself, and I was trying to think of what could be causing this.
And then the swelling, it swelled up like three or four times what it should be, to the point where my husband said at conference, we had went back and we're trying to get some sleep. It was midnight and he said, "That is not normal. You are going to get that looked at and dealt with when we get help. There is no more putting this off. It's time to deal with it." And I was in complete agreement because it was in a lot of pain at that point.
Came home, made an appointment with a regular doctor, and I just asked, I'm like, "We need to get an MRI, need to get some imaging of this," and that's what I thought I would go in and get the referral for. However, when I went in and he started to examine and history of how long I had it, et cetera, he said, "We need to get an X-ray of this now."
And I'm like, "An X-ray? Why would we need to get an X-ray?" He's like, "Because it could be a lymph node." Well, for those of you who could imagine, he was worried that it was a lymph that had a tumor and probably was cancerous, and because it had been over two and a half years, there could have been a possibility that it had moved into the bones.
He didn't have an MRI in his doctor's office, because most doctors don't, but they did have an X-ray machine. We went in and got X-rays immediately, and thankfully, it didn't show anything in the bone, so that was great. He got me a referral for an RI so we could get further imaging and find out what was going on.
And of course, within our modern medical system, it seems that everything is pushed really far out. There aren't openings. You have to wait for things. I've just recently experienced this with my husband who has been having some AFib heart issues that have came up, and with this.
I could not get an MRI appointment for... It was almost 10 weeks from the time. I think it ended up having a cancellation and could get me in, this was the summer, a little bit earlier, so it ended up being right at seven weeks.
Went in for the MRI, got the MRI done, and thankfully, the tumor, so I do have a tumor. It wasn't a lymph though. My lymphs are all clear, and the type of tumor it is called a giant lipoma, so basically, it is a fat cell that doesn't know it's supposed to stay a fat cell, and it's not playing by the rules, and has grown into a large tumor.
And usually with lipomas, most of the time, almost all of the time, they are benign, meaning they're not cancerous. And if they do turn cancerous, it's usually when you see veins that are starting to feed, and there's feeder veins inside the tumor. That can be a sign that it's cancerous. The MRI showed us that there was no veins feeding to the tumor, so all signs indicate that it's not cancerous.
Of course, that was a huge relief. I cried, because until I got the MRI, that was a seven-week period of wondering, "Is this my lymph system? Do I have lymph node cancer? And what does that look like?" We all know that we are mortal. None of us are immortal, right? We are all going to die when we leave this world.
But for most of us, that is a future state, even though we have no idea when our last day and our last breath is. But I was, "Do I need to write letters to my kids for big moments, like when they get married, if I'm not here?" It really made you about a lot of things and evaluate a lot of things when you're faced with, "This might be it."
And I'm so grateful that that was not the diagnosis that I got, and incredibly grateful, and my heart goes out to anybody that does get that diagnosis, because just thinking that that might be the case, it was scary. I have to be honest. I'm really grateful that that's not the road that I'm walking right now.
But we did get the MRI results back. Because of the size of the lipoma, it's considered a giant lipoma. It's over six millimeters, so anything above that is considered a giant lipoma.
Now, oftentimes, they just leave them in the body because they don't usually cause harm and one generally doesn't have surgery unless it's needed. However, with mine, it has fingers that have grown and wrapped around the nerves that control my left hand and wrist and arm.
All of the doctors that I saw were actually very surprised that I wasn't experiencing a lot of numbness, and aside from a weaker grip, but I'm right-handed anyway, so I've never had a stronger grip in my left hand. It definitely is weaker, however. But aside from that, they were very surprised that I still have full functionality of the hand with the way that the tumor is wrapped around the nerves. That also is good, that even though that's happening, I still have pretty much full function of my hand, so that is wonderful.
However, it's actually a higher level of pain, which makes sense, because the tumor is actually really large. I'm just going to show you, I'm just going to kind of pull back, and I don't know if you can really see as well on camera, but on the left side of my neck here, you can see on the video, it's quite raised up and you can push it. You can see it's movable. I can move the tumor and I can feel the head of it here.
Where I actually have this side, there's full indent. You can see a collarbone as it should be dented down. And on this side, you can't really see my collarbone. It's all pushed up. This is all tumor, whereas on this side it's normal. Visually looking, you probably don't really see it a whole lot unless you can really look at it. And, of course, then if you feel it and push it, then you can totally tell that it's there.
But it's like the head of an iceberg, basically. This part is just what's able to come up and it is pushed up between the bones here of the shoulder, so on the MRI, actually down in the shoulder cavity is where the mass and the most of the tumor is, and it's pretty large.
It's just continuing to grow and it's only going to get larger and wrap more around those nerves, so we made the decision to take it out before it gets worse and wraps around the nerves worse and just creates more of a cavity than it's already there.
I am going down to Virginia Mason, which is in Seattle to have the surgery from a specialist. I went to a couple different local doctors, and they said the way it's wrapped around the nerves, they aren't comfortable doing it, so I'm going down to a specialist and going in and having that done. Tomorrow morning, early in the morning, is my check-in at the time of this recording. By the time this releases, hopefully I will be coming home from the hospital.
I do have to stay overnight. They're putting a drain in. Because the cavity of how large the tumor is, the surgeon is concerned that it will fill up with fluid, because there's so much space there once the tumor is out, so they want to put a drain in. And because we live so far out, that meas, we'll stay overnight, they'll leave the drain in for the first 24 hours and then take that out, and then hopefully just going to come home.
And have a couple of weeks where I can't really lift anything, because, he said, "Holistically because of the size of it to get it out, it's not like it's going to be laparoscopic." I'll have a pretty good incision and scar there, so taking it easy for a couple of weeks.
If you've been listening, if you're on the email newsletter list, you saw some of my emails, or if you're in the Pioneering State Academy and shared this with academy members, I have made up ahead of time our Pumpkin Rolls. That is one of the things we always have for Thanksgiving. I made up a lot of the Thanksgiving items that I put ahead of time, got those froze. I did a bunch of canning of meals and jars yesterday.
I got all of the Christmas decorations out, I got Christmas tree up, because I'm not sure how much the pain level will be and how quickly I'll be able to get back to everyday movement. And so I'm like, "As much as I can get done ahead of time, we'll do," and then hopefully within a week or two, pretty much be back to normal and not have any nerve damage as they're taking it out for the hand, so full mobility afterwards.
And ideally, I'm really hopeful that it will take the pain down. Basically because it is so inflamed and pushing on everything, including nerves, I would say for the past two years, and really the past year, I can always feel it. Right now, it doesn't really hurt, but there's a tenderness. There's always a tenderness.
Usually, it's at a level I can ignore and just go about. It's just a tolerance level that you come with. But it does definitely have moments where it will flare up for a couple of days, sometimes a little bit longer, where it hurts so much that you just kind of sit and cry.
I haven't figured out a way. I don't use prescription pain medications. I don't even really use over the counter meds, so I did get some herbs that have been helping with the pain management. However, you can't use herbs about a week before surgery because it can interfere with anesthesiology, so I'm super thankful that this past week it has been behaving itself, because I haven't been able to use anything and I haven't had any really big flare-ups. That has been a blessing.
Just wanted to share with all of you, if you don't see some podcast episodes from me in the next couple of weeks, I know next week is Thanksgiving, so that wouldn't be that big of an anomaly, but you might not see a few episodes from me in a few weeks. I will be back. I will be doing new episodes in December, so that will be happening.
But it's also really made me kind of reflect where I'm spending my time, what I want to spend the rest of my life doing, quite honestly, in the now and also in the future, so it's been a very interesting time to make one truly sit and reflect on what matters and what you want to be doing and what you want to devote your life to.
And it definitely is to homestead. I am more passionate about homesteading probably than I have ever been, quite honestly. But also within that balance in personal life versus like this. It is a public forum, public sharing, podcasting, doing videos, all of the website, all of those things. Where is a great balance? That's something. You may see some slightly different maybe schedules and things coming out in the new year. Still working through that.
But what I really wanted to share with you is you have to be your own health advocate, or the advocate for people in your family or your friends. Our modern healthcare system, for so many reasons, there is no one reason or no one cure for the way our modern healthcare system is right now. There are lots of reasons, but if you are not your own advocate and you do not push for things, it is so easy for you to get lost in the healthcare system.
If I had not went back in and insisted like, "Hey, something's wrong," and honestly, I waited two and a half years, because I kept thinking, "It's going to go down. Whatever the swelling and inflammation is, it's going to subside. It's not anything serious."
And I don't know if I'm being completely transparent and honest if I thought that maybe it would be something more serious, and so it was some form of denial. I couldn't tell you because now I look back, and if anybody else had shown me the amount of swelling that was there and had never went away for two and a half years, I would be like, "You should not allow your body to stay in that state of inflammation for that long. You need to go in and exhaust what is causing it. That is not normal."
Yet when it came to it being me, we're the worst people at following our own advice. Anybody else? My hand is raised here. Don't put things off when it comes to your health. Also, when I went in and first saw the doctor, and they didn't order any imaging, and she actually had no idea what was causing this significant amount of swelling and inability to move, I should have insisted, "We are doing imaging. We are getting an MRI right here and now so that we are not guessing."
And it's so easy to want to blame the providers or to blame the system, or, "They should have done that. They should have done this." And yes, there should have been some imaging done. However, it's our health and it's our bodies, and we are responsible for those, so I'm just saying, you need to be your advocate. If something is off, you need to speak up.
Doctors are not God. They don't know everything. I am grateful for doctors. They know a lot. Obviously, I'm going to see one, and I'm so happy that we have anesthesiologists. I would not have to want to go through this and having this removed and cut out without that. I'm grateful for skilled surgeons that know how to do this. I'm really happy for that.
However, I've seen so many times where, for example, a test needs to be ordered and you call and they're like, "Well, we can't get you in," or, "You're referred to a specialist." I dealt with specialist referrals four times. Some have been for myself in this issue, and some has been other family members within the past four months, and they'll do a referral to whatever specialist, and because they're so backed up, they can't sometimes get you in for three or four months.
And a lot of people who just be like, "Oh, well, that's when they can get me in." But if it's something really serious... Now, sometimes that's fine, depending on what it is. But when it's really serious, you need to be the advocate, so you're going to have to get on the phone and you're going to have to call all the specialists in so much of a radius mile and find out which one has an opening sooner.
And that's what I had to do. You have to call. Make sure you're on wait lists. If they can't get you in for imaging somewhere or for whatever it might be, and it's weeks, months out, take the soonest appointment they have, but also verbally say, "I want to be on your cancellation wait list." And I think so many people don't realize that you, one, can do that, and two, oftentimes that you have to do that.
You just need to push until you are confident that you've gotten all of the testing that needs to be done, or you feel that it's accurate, because I have to say, nobody knows your body like you, and if you feel something is still wrong or not right, in most cases, you're probably right. You're probably correct.
If I can do anything with this whole message is to empower you to be your own advocate and educate yourself. We have [inaudible 00:24:42] time. And yes, you can Google or search engine of your choice pretty much anything, and you can find a lot of false things. However, you can also find a lot of information.
Whatever the diagnosis may be, whatever you're dealing with, take the time to educate yourself. Look up from multiple different sources. Look up at universities and hospitals and just all of the things. Completely educate yourself about it. You're smart. Every single one of us can understand medical stuff.
Now, no, we're not all doctors and all of that, and we don't have obviously all of the schooling that they do, but we definitely can educate ourself and have a better understanding of anything that we've been diagnosed or anything that's going on with our bodies. And again, that is on us. It is our job to learn about things and all of the different possibilities.
Of course, I was looking up herbal, I was looking up natural remedies, all of the things. What are all of the treatment options? How do they work? And that is something that's really important, that each person also needs to do for themselves.
I just wanted to come on here and share that with you guys, let you know a little bit about what was going on, but really, to be your own healthcare advocates. I cannot stress that enough, because in the past four months alone, I have been so frustrated with our modern healthcare system. And I know I'm not alone in this, and I don't really have anything that serious happening to me right now. Truthfully, I'm just having a benign tumor removed. I am so lucky.
Our healthcare system is broken. It is broken, and so is our food system. If you listened to my episode last week, which apparently I just am going to cry with you on every episode, but it's so important. And I don't have the answers to fix them all, but I do know what you can do in those situations, and that's what I want to share with you.
And I don't want anybody to feel helpless, because I don't believe that that's the truth. I think that there's all things that we can do, and the more that we share what you can do with other people, that allows them to see what they can do, and there has been a lot that I have been able to do.
Like I said, you can go and listen on diet and food alone that has made drastic changes. There are things that you can do in each situation, but we also have to call out the fact of the elephant in the room. I know most of us, especially if you're listening to this podcast, we're already aware of it, but sometimes, we're made more aware of just how broken things still are.
And the need for more of us to be able to help one another where systems that are in place aren't, can't, that's a whole nother subject, whole nother topic that we could dive into there. And I'll be frank, I don't have the energy to dissect that all today, nor the time, because I actually am going to fill up all of the chicken coops and get all the chickens ready before we leave so that it's not something while we're gone that has to be done, that they're well and taken care of.
Today's podcast episode is sponsored by Azure Standard. Azure Standard, actually working many times, including last week's episode. I am very grateful for companies like them. They have been one of those that looked at the food system and said, "It's broken. Here's what we can do to fix it and become a solution for a lot of people," so if you are not familiar with them, I highly recommend that you check out Azure Standard.
And if you're a first time customer with them with an order of $50 or more, use coupon code Melissa10 at checkout and get 10% off. That's at azurestandard.com. They have all kinds of groceries, from frozen, fresh pantry staples. You can buy in small, you can buy in bulk.
They actually have an herbs section. They have almost almost everything that you need to operate your homestead and kitchen, a real food kitchen they have available for you on their website. I definitely recommend checking them out. I was a customer of theirs long before they became a sponsor of the podcast, so highly recommend them.
And then I just wanted to share with you today a verse of the week. This was actually one of the very first psalms that I memorized and a verse as a child, and that is Psalm 91, but specifically verse four of Psalm 91, and this is the NIV version, because that was the version that I memorized this psalm from, and this verse back in the day.
But that is: "He will cover you with His feathers, and under His wings, you will find refuge. His faithfulness will be your shield and ramparts." And that particular verse from that psalm has been one that, anytime I feel scared, nervous, anything along those lines, that is one that always immediately comes back to mind and brings me comfort.
And especially as a homesteader, and having chickens now, and seeing the way that mama chick, when she has her babies, and they get scared, they'll run around mom, and she'll tuck them up under her wings, and it's actually a really beautiful imagery from when you have that Bible verse and then you actually see that played out before you and you think, "Oh, that's what God is doing for me in a spiritual sense."
That always brings me great comfort, so that's one of the verses that I have just had coming to mind, especially today, as we get ready to leave and go down and do all of the things, surgery check-in and pre-op, and all of that has been bringing me great comfort, so I hope that it brings great comfort to you, as well.
And I will be back here with you. It will not be next week, as far as the podcast, but I'll be back here with you in a couple of weeks, so blessings and Mason jars for now, my friend.
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