And I’m staying on top of things. Yay me! If you’re new here: I made a NYE resolution to try and do one new thing a day. I try and document my new experiences on this blog. Keyword: Try.
Yesterday was April Fool’s Day but I was not fooling around. As some of you know, I was recently diagnosed with a tumour and had to have surgery to remove it. The myofibroma was in my hard palate and my doctor had to dig out a good part of my mouth, nose, sinus area. Painful indeed, but what was worrying were these boney, hard ridges that had grown on the resection site. It was painful, almost like having little knives on the roof of my mouth. Well yesterday, one of them ripped itself out of my mouth. It is so bizarre. It is sharp and difficult to break and disgusting and a mini-shank.
April 2nd… Today… Yay!
My kitty has been chewing on my wires, literally killing them with his punctures. And now I’m giving these babies a go because I can’t afford to buy new wires on the regular (And I obviously want to keep my furrbaby safe.) I hope it works.
I have been away from my Year of Firsts updates for so long. Just because I haven’t been updating doesn’t mean that I broke my New Year’s Resolution. Recap for those of you who haven’t been here, I made a NYE Resolution to have one new experience a day for the entire of 2018. No matter how big or small the experience, it all still counts.
I’m going to jump right into it and hopefully catch you up to where I am now while explaining why I’ve been away.
As some of you may know, I was diagnosed with a sizeable yet benign myofibroma in the roof of my mouth. It was an active tumour and was growing. It was eating away at my bone and am told that I was close to developing a fistula, as it was growing into my nose. February 5th was my surgery date. I was so nervous. I’ve had surgery before, but nothing this extreme. Moments before the operation, I was in a room with medical staff running here and there. It was super busy and others were getting surgery and it’s hectic. So hectic that it contributed to my anxiety. My blood pressure was through the roof, so they opted to give me some Valium before the surgery to chill me out. It was weird. I felt that drug hit me within minutes, it was administered via IV so that’s not surprising. But still, I felt like a drunk person. It was so weird. I remember being wheeled into the operating room and there was an entire wall of shelves with what I imagine was supplies. After they put me on the bed, I don’t remember anything. I was out. Next thing I knew, the anaesthesia was wearing off and they were preparing to take me out of the operating room. They had these blood pressure sleeves on my calves and as they were taking them off, I told them, “No leave them on, It feels like a massage.” Everyone laughed. For next couple of hours, I felt in and out of consciousness, I guess. Strangely though, by the time it was for me to get home, I really felt good enough to drive myself home. I don’t know if it was the morphine or what, but I didn’t feel pain. I wasn’t dizzy. I just felt pretty normal. When I got home, I was normal. I was sitting around and talking as though nothing happened. The only thing that was really different was that I have a huge chunk of my head missing, mostly in the maxilla region and that meant I couldn’t eat.
Which brings me to the 6th. Sleeping was kind of tough and the pain was manageable at this point. But what was the most interesting as it was my first time being on a strictly liquid diet. Before surgery, I had prepped by buying a lot of meal replacement drinks, protein drinks, juices, Gatorade, Pedialyte, etc. They only foods I could have were yoghurt and ice cream. So I had tons of that around. I don’t want to jinx it, but I thought that I’d get really hungry not being able to eat, but I have to say these meal replacement drinks work. The weird thing was that my mouth was starting to miss the actual physical action of chewing.
Now, this First was not happy. This is the day where the pain and shock really set it. I don’t know if maybe the anaesthesia and morphine took a while to wear off and maybe the whole experience didn’t feel so real, so now is when it all became real. I can’t even explain to you the pain. Putting anything in my mouth, including water was so painful. So the 7th was the day that I got serious about keeping track of my meds to ensure I don’t miss a dose. But the sort of fun part of that was that I had ice cream all day. I’ve never done that before. A whole day of ice cream. So good!
The 8th was when the boredom really started to set in. I became really familiar with the app store and started downloading apps like crazy. Most of the apps I tried were pretty thumbs down. But it gave me something to do. It was the first time I tried a role-playing game. I didn’t really get too into it. The storyline I was given was bland, but I imagine there are better ones out there. I’m open to suggestions.
Because I’m still on the liquid diet lifestyle, I had someone make a trip to Arlee’s and pick me up some green juice. Up until now, most of my liquids have been on the sweeter side, so I needed something green to break up all that sugar. Good stuff. It burned a little, but what doesn’t burn my mouth at this point?
Our house has been kettleless, since the last relatively new kettle we bought, was forgotten on the lit stove and burnt to a crisp. So now we get to try and have tea from a ceramic kettle. I’ve never had a ceramic kettle before.
I was introduced to clove tea for the first time. I’ve had cloves in many other ways, in cooking and in my toothpaste, but never on its own as a tea. It was miraculous in my mouth. With a little honey, I drank the cup in no time. It had the power to numb my entire mouth. I felt no pain. It was beautiful!
Even though I’m supposed to be on a liquid diet, I started craving food. Not out of hunger, but out of the desire to chew something. I thought about it and decided maybe a frittata was a good way to eat something, but have it be soft enough. Let me tell you, it is tough to eat without the roof of your mouth. I have no hard palate, so the food falls into this grand canyon that exists in my mouth. And when that bite of food finally met the bottom of the canyon, man, it hurt. I figured it was worth a try though.
Since my tumour removal was in my hard palate and nose and that whole area in between, the tumour had also grown into my bones and around my teeth. That being said, after removing the tumour, the doctor warned me that my teeth were going to be super sensitive. Oh my God, was he right. I felt like my teeth were and still are pounding all the time. ALL THE TIME. That being said, brushing my teeth is super tough. Sometimes I have to put some Orajel on my teeth just so I could brush them. Even then, commercial toothpaste was way too harsh on my wounds. Because my surgery was done through my hard palate, there were no stitches because there was nothing to stitch it too, so my entire wound/incision was cauterized. That being, my entire mouth was burnt. Imagine putting your regular everyday toothpaste on a burn. You wouldn’t. So I did some research and found this natural toothpaste. It seems to clean my teeth well without irritating my wound.
Singles Awareness Day, one of my favourite days of the year. It’s the day I buy myself a gift and tell myself how incredibly amazing I am. LOL. Because I’m amazing, I thought I’d give another go at eating. Tried out these broccoli-cheese tots. Their gooey texture made it a bit easier for my mouth to handle. Everything still gets lost in there and I felt a bit icky eating the entire tray, but in the grand scheme of things, it wasn’t so bad.
I went to a follow-up appointment with my surgeon. He said things were looking good. Knock on wood. Thank God. Don’t jinx me, please. At this point, I was in way too much pain. I hadn’t been able to drink water for over 12 hours. I thought maybe I had pushed my mouth too far the day before by trying to eat because my mouth was so irritated. to my dismay, when I asked the doctor when things will start to feel better, he said they really won’t. And by that, he continued to say that it will take 3-6 months to fully heal, but in the meantime, it is going to hurt and it is going to be very painful. What really got me upset was when I asked why the pain was getting worse and not better, he told me that there will be no consistency. Some days will be good, other days will be bad. It’s not like any other type of surgery where with time things get better. It’s very possible things could get progressively worse. And that my friends is a serious bummer. In the meantime, he gave me this thing called Magic Mouthwash. You read correctly. Magic Mouthwash. Coincidentally, or maybe not coincidentally, my insurance doesn’t cover this mouthwash “because it’s a compound.” I don’t even know what that means or what that has to to with me. It costs $50, so I had to make some phone calls and ask for money for others, which I HATE to do. I’m unemployed and certainly didn’t plan on getting ill in this way. It’s absurd that insurance doesn’t cover it. Anyways, this Magic Mouthwash is supposed to be magic. It’s typically used for cancer patients that experience mouth sores due to radiation. It’s made up of Maalox, Benadryl, Lidocaine, antacid, antihistamine and anaesthetic. It really was like magic. I’d just swish it in my mouth and my entire mouth was numb. It was a miracle. The prescription says I can only use it four times a day, but I really wish I could use it every second of the day.
This day’s First was scary. Super scary. I was in bed after getting ready for bed. It must have been around 11 PM. I tasted something super salty in my mouth and had no idea what it was. I went to the bathroom and looked in the mirror. My mouth was full of dark blood. When I spit, I spit out nasty and huge blood clots. The clots I assume were responsible for my cauterised mouth. I rinsed my mouth with water and didn’t think much of it. The doctor said there would be blood, maybe this is what he meant. A couple of hours later, I felt that salty taste in my mouth again. I went to the bathroom and was bleeding from my mouth, much like a bloody nose, but from my mouth. Because of where the blood was coming from in my mouth, putting pressure on it with just my mouth wasn’t working. So I got an ice cold glass of water and kept the water in my mouth as long as I could and then would spit out. Put the water in my mouth again, spit out. Again and again and again until I got the blood to stop. I didn’t know what else to do or what I was supposed to do, so I went back to bed. A couple of hours later [again] I felt the salty taste in my mouth again. This time was different because, by the time I got to the bathroom, the blood was pouring out of me. I looked like a Carrie doomsday horror movie vampire fountain. Blood was shooting out of me as though I turned on a sink faucet on high. It was scary. I started to shake and felt so weak. I had some gauze and put it in my mouth, trying to put pressure on it with my tongue. In less than 10 minutes, I went through more than 10 pieces of gauze. The gauze wasn’t just soaked, it was swimming in a pool of blood. It was crazy. I went to the ER, it took more than a half hour to stop the blood. At the ER they applied some lidocaine and epinephrine to my mouth. Apparently, epinephrine acts as some sort of vascular restrictor? Or so the physician’s assistant told me. By the time I was discharged and got home, It was around 6 am. I got in bed and hoped that nothing like this will happen again. Positive vibes everyone. Positive vibes.
As I’ve mentioned before on this site, I, unfortunately, have been diagnosed with a tumour. I am thankful and lucky that my tumour is benign, however, it is aggressive.
This tiny bump showed up one day on the roof of my mouth. I thought maybe it was a cyst or something, ya know like when you bite your tongue and sometimes get a little blister on the end of your tongue. I didn’t think much of it until a couple of weeks later when this tiny bump was no longer tiny.
It had turned into this volcanic shamed mass that took up the entire hard palate. I went to the dentist and she literally tried to convince me that it was caused by a “hot cheese on pizza burn.” Uhhh, no. I’m pretty sure I know what I’m talking about and can confirm that I did not burn the roof of my mouth on hot pizza.
I finally convinced her to give me a referral and was sent to an endodontist. The endodontist didn’t know what it was. He then referred me to an oral surgeon.
I went to the oral surgeon back in September and October. He did two biopsies and said that the biopsy reports came back with “nothing” and that he sent my biopsy to the “best lab.” His assistant followed all that up with, “everything looks A-OK. You don’t have to come back.”
The wording of it all is suspect, but I trusted him. I wasn’t sure what else I was supposed to do.
Anyways, the lump that I was feeling in my mouth didn’t go away. So I went to my primary care physician. He took a look at it and thought it looks like a torus, but he referred me to another oral surgeon for good measure.
This second oral surgeon took a look at it. He told me to get a copy of my pathology reports from the first oral surgeon and gave me a referral for a CT scan.
I went to the first oral surgeon and asked for my pathology reports and was shocked. My pathology reports clearly state that my diagnosis is a Myofibroma– a tumour. This guy was looking at the pathology reports in front of me and telling me there was nothing when there was very clearly something. I’m furious.
Long part of this story short, the second oral surgeon freaked me out by telling me the size of my tumour and the procedure needed to take it out. I went into panic mode. I got dizzy. I cried. I was a mess.
After the initial shock of it all, I decided I need a second opinion. I spent days sending out emails and calling doctors all over the country trying to figure out what I needed to do.
I took a stab in the dark and called the local cancer treatment centre in my state. The office staff had doctors look at my pathology reports and other paperwork to see if there was even someone who could take my case on.
Yesterday was my appointment. Yesterday’s First was my first time in a cancer centre as a patient and it was overwhelming.
The initial reaction was that the waiting room was so tiny and it was packed with patients and their loved ones there in support. I had never been in a waiting room in which a sense of camaraderie was felt amongst the patients. I mean, no one was going to break out in song and dance High School Musical Style, but there was a shared understanding that no one was here because they’re having a particularly good time. Since we’re all here, let’s at least respect each other and exchange smiles, magazines, pens etc.
It was a very long waiting time. I waited 2.5 hours to see my doctor, and it was getting intense watching patients go in and out while I waited and waited. I knew they hadn’t forgotten about me because they took me in to get my vitals and look over my paperwork. I assumed that the doctor has a lot of patients. Unfortunately, cancer and tumours are a sadly popular occurrence.
That being said, the waiting room was getting loud and it was making my head hurt big time. There was a man who came in well after me. At this point, I had been waiting two hours. This dude walks up the receptionist angry and annoyed and asks why he hasn’t been in to see the doctor yet and that he should have been taken in a half hour ago.
I’m sitting there thinking, “Dude I’ve been waiting longer, chill your bones.” But of course, I never said anything. The receptionist said that the doctor had to perform an emergency surgery and there was nothing any of us could do except wait. The guy mumbled something in an angry voice to which she responded, “If it were you, you’d want the doctor to rearrange his schedule to operate on you.”
This got the guy to quiet down. He sat in the corner and sulked. I don’t want to judge him though. Like I said, no one was in the office that didn’t absolutely need to be. He could have been in serious pain or could have a tumour in his brain that’s influencing his behaviour. He could have been having a really bad day or week. Who knows?
Despite the camaraderie, I did get this feeling that we were all walking on eggshells in a way. Maybe we all knew that we have health problems going on and we just weren’t trying to bring any more trouble into our own or anyone else’s life.
Yesterday may have been my first time in a cancer treatment centre, but I certainly do hope it’s my last.
Yesterday’s First was kind of awkward. It was my first time seeing a plastic surgeon. I mean, I’ve seen tons of plastic surgeons on TV, but never in person and for me.
I didn’t really know what to expect, but the office was just like any other office. The only thing that was really different was that the waiting room had these huge posters advertising for facelifts and such.
This plastic surgeon is also an ENT, but because he focuses in plastics, my insurance, of course, did not cover the appointment. I don’t know if it was because he knew I had to pay out of pocket for the appointment, or maybe this doctor likes to take his time, but he sat with me and my mom for almost a half an hour to talk about my tumour.
Ultimately he said he couldn’t help me, which I appreciate the honesty. I’d rather him say he can’t do it than take me into surgery and make a mess of an already messy situation. Even though he couldn’t help me with the removal of my tumour, he did teach me quite a bit about it.
I have to say that I was bummed that he said he couldn’t help. So far I’ve seen two doctors that had no idea what a myofibroma is, this plastic surgeon that knew about myofibromas, but didn’t feel comfortable removing it and one oral surgeon that wants to remove it. But removing it via the oral surgery route is going to require taking apart half my mouth and if my tumour was a millimetre in any other direction it would be much easier to remove. But it’s not and that’s my life.
Still praying for a miracle. Pray with me? For me? Send your positive vibes in my direction? I’ll accept it all.
Yesterday’s Year of Firsts wasn’t the most exciting. As I’ve mentioned in a couple other posts, I was recently diagnosed with a rare and aggressive Myofibroma tumour. I’ve been told by a couple of doctor’s that it needs to come out ASAP because of the rate that it’s growing and it’s current size.
However, the current treatment plan consists of extensive surgery that would leave permanent and irreversible consequences for some of my other organs.
We have a family friend who is a doctor and she took a look at my pathology reports, as well as my CT scan. She suggested I look into some natural supplements to help shrink my tumour while I wait for my surgery date. Hopefully, I can reduce the size of this thing growing in my body, even if it’s just a speck.
So I got researching and I should probably add a disclaimer that I’m not typically a person that thinks you can… I don’t know cure cancer with some organic carrot juice. But as the saying goes, “There are no atheists in the trenches.” And right now I’m willing to try anything– within reason.
This was just the beginning of my long research process. I spent hours upon hours looking into this stuff and narrowed down the list to a handful of supplements that I’m not entirely excited to be taking, but feel like I at least need to try.
I added this on top of all the other meds I’m taking and I feel like there isn’t enough time in the day to be taking them all. But I’m taking them as directed and have consulted with my doctors to make sure there are no interactions.
Will it work? Who knows? I’m praying for a miracle.
I don’t do this often and the few times I have asked for help, I’ve never gotten very far. But I need to try because I don’t know what else to do.
I suppose this is a long rant about what’s going on with me and my life these days. I try to keep it quiet and distract myself with pretty things, but sometimes I need to let it out. And maybe you can find it in your heart to get through this and help me in some way. Anyway.
There are too many things going on. Too many things. No one I know has money they can lend or just gift me. I have no money. My family of 3 lives off of $17k a year. I honestly don’t know how we make it.
Health insurance is denying my claims. I can’t pay my medical bills. I need a ct scan bc I have a tumour that may need chemotherapy (according to a resident at John Hopkins) and I can’t afford any of it. It may not need chemo or radiation. It could be nothing. It could be outright removed (even though we’ve removed it twice already) but I’ll never know until it’s too late, if I can’t get this ct scan.
I practically live on my asthma inhaler and I often wonder if I can even afford to “waste” another huff of it. My asthma isn’t bad enough to kill me or anything like that, just bad enough to torture me every day and send me to urgent care with the occasional asthma attack that requires being hooked up to a breathing machine.
I got put on prednisone. The side effects are weight gain, fatigue, foggy thoughts, pain, nausea and just about everything I don’t need right now, or ever.
My phone is dying a little more every day. I can’t make or receive phone calls or texts and data anything doesn’t work. I can only use it when I’m home and connected to wifi. It turns off randomly. Freezes. Even when at home, it can take forever for it to do anything. Battery life is an hour at rest if I’m lucky.
My mom’s car is busted. That was our only source of transportation and now that’s gone. We can’t afford to fix it. The closest bus stop is 5 miles away on the highway with no sidewalks. I can’t walk there bc I have nerve damage so severe that I’m on meds galore and still can’t walk longer than 15 minutes. And sometimes the pain is so bad that I can’t walk at all.
I have nothing in my name other than debt. What are these bill collectors going to take away from me? I don’t have wages to garnish. What do they want? I have nothing to give them. If I could dissect this tumour myself, I would maybe sell it to science or some weirdo on Craigslist. That could make some money, maybe.
Nothing is right or even close to it. Even if after 4 years of unemployment someone does want to hire me or even interview me, how would I get there? How do they call me? Even that doesn’t work out right.
I’m stuck and I need help getting unstuck. I’m so embarrassed to even be asking, but I really don’t know what else to do.
If you can find it in your heart to maybe throw a few bucks my way, I’d be so insanely and forever grateful. Maybe you can pass this along to a friend?
I’m a fan of snail mail. I like being able to hold a letter in my hand. And because most things are done these days through email. I LOVE getting shopping catalogues. I can’t afford anything in them, but I love to look at them. They keep me entertained and inspire my many daydreams.