Monday, March 31, 2014

The other part of my story....

This part of my tumor, cancer, surgery story is still like an open wound for me. Whenever it comes up I still get pretty infuriated and I tend to ramble on and on about it because I get so worked up...so bare with me. Up until recently, I usually just leave this part of the story out, but after getting involved with some oral cancer organizations, I've been told that this is very helpful information and critical that I share. So here goes...

About 6 months before I ever found a lump in my mouth, I had an MRI head scan for something totally unrelated. At that time, I was having some fainting spells the doctors could not get to the bottom of. To be safe, my doctor referred me to a neurologist to get an MRI of my head to rule out any seizure activity. After a brief examination by the neurologist, he told me he highly doubted I had any kind of seizure disorder, but he would order the MRI just to be safe. He told me not to schedule any sort of follow up appointment, depending on the results, I may never need to see him again. I did the scan and he called me about a week later with the results. This phone call lasted three and a half minutes (I know this because I later got phone records of this call for the lawsuit). He told me over the phone that everything looked fine in terms of my brain, everything came back normal as he suspected. He mentioned there were some "unidentified signal changes" but that it is completely normal. Not knowing what that meant, I pressed him on it. He reassured me it was common and most likely just a false positive. I pressed him again, suggesting maybe I do the scan again just to make sure. He again reassured me it was very common and nothing to worry about. He cleared me of everything. I never spoke to him or saw him again.

Fast forward 6 months, the tumor in my mouth has been discovered, and the tornado of doctors appointments is just getting started. One of the first doctors I saw wanted to do an MRI head scan to get a better look at my tumor and what we were dealing with. Dreading my head being strapped in that tiny box while lying in that tiny tube again, I told him I had one 6 months ago, did I really need to do it again? He asked if the previous scan was done within the same health care network that he was a part of, if so, he could access it right then and there. It was and he was able to access the scan within a few minutes. Sure enough, after going through a few slides, there was my tumor. I think his exact words were, "Ope, yeah, there it is." I couldn't believe it, I could see it with my own eyes. My family and I surprisingly were not up in arms about the fact that it was there and the neurologist missed it...not yet anyway. It was extremely unfortunate, but at the time he was looking for seizure activity, not lumps in my mouth...maybe that's another area of expertise. There was so much else to focus on at that time, we just saw it as unfortunate. We weren't thinking lawsuit, malpractice, and burning this guys house down....that came later. I was going to see a head and neck specialist in Mission Viejo who would later become my surgeon, he asked me to bring any reports, x-rays, or scans including the original MRI I had done. I picked up the copy of the original MRI on my way to the appointment and read the report for it in the car for the first time. I was beyond shocked. All I remember was that F bombs were flying as I read the last 2 paragraphs

"...there is a nonspecific area of abnormality within the left of the oral cavity....apparent enhancement/lesion within the left side of the oral cavity incompletely evaluated here. The patient should have immediate further evaluation with CT or MRI scan with contrast to further evaluate this area of abnormality."


Shocked would be an understatement. This was the first I had heard about it...6 months later.

I was infuriated. Enraged. Confused. Shocked....a thousand things. Now we were definitely thinking lawsuit, malpractice, and burning his house down. A lawsuit was definitely happening, but I had to focus on my surgery and recovery first and deal with the dumbass doctor later. In typical big brother fashion, I remember my brother wanting this doctors name and address...you know, to go kick his ass. Honestly, at least for that first day, I think that's exactly what he intended on doing, we all had to talk him down a bit. (love you, brother!!)

My case would prove to be malpractice, but you'd be surprised how hard it was for me to find an attorney to represent me. It was incredibly disheartening to learn that attorneys in the field can acknowledge that yes malpractice occurred and my situation was definitely sad, but since I'm not dying, I have all of my limbs, I can walk and talk...it just wasn't worth it to take. I literally had people tell me that --- it's not worth it because it is too low level. It was infuriating to hear this. How dare you tell me its low level, let me take my mouth out for you right now and poke at my eye socket from inside my mouth (because I can do that) and then you tell me this is low level. It came down to money, not right and wrong or being held accountable. That was a tough pill for me to swallow, which is ironic since that is literally hard for me to do now. I finally did find an attorney willing to represent me and a lawsuit was filed. It was me vs. a big ol' health care network (which I won't name for obvious legal reasons) and 2 of their doctors. It was a classic case of big fish vs. little fish. The big fish and their attorneys drowned me in paperwork that would mentally break me several times over. So many specifics, so many details, so many questions having nothing to do with what happened, but about me and my character. It was so unbelievably draining to relive every tiny detail of what happened over and over and in ways I never even thought of. Most of it was all bullshit, just busy work to make you loathe every aspect of the lawsuit, which I will admit worked quite well.

All of the lawsuit stuff was definitely not helping my mental recovery from everything else. I was already so broken trying to process what happened, and anything related to the lawsuit just knocked me back down over and over again. My dad was even skeptical of going through with the lawsuit in the first place, worried about how it was going to affect me mentally. I had to go through with it though, for my own sanity, this guy needed to know what he did. It was never about money for me, I didn't want a dime, I just wanted an apology for what happened. Just for him to admit that he messed up and is sorry for what I had to go through, that would have been enough. I would have signed and agreed to that and dropped the whole medical malpractice lawsuit in a heartbeat.

The big fish and their attorneys weren't budging on any sort of settlement, they were going to take this thing as far as they could and take their chances. The neurologist I filed the lawsuit against claimed he told me about everything over the phone. There are so many holes in that story that I wont even get into it, but if calling a patient over the phone to inform them they have a tumor in a 3 and a half minute phone conversation is their standard of care, that is just scary and wrong. What they ultimately said was that yes, neglect on the doctors part did occur since there was no sort of follow up for what he allegedly told me. However, their medical experts believed that since it was cancer, the surgery and everything else would have been the same so there was no damaging effect due to the doctors neglect. You need to have both in a medical malpractice case, neglect AND causation, meaning the neglect caused this big hole in my mouth. They said it would have been the same regardless of the delay in diagnosis. Doctors said that at the time of the original MRI, the tumor was the size of a pinky fingernail, at the time of my surgery it was the size of a golf ball. To me, that's common sense...remove a pinky fingernail from someones mouth and the hole is relatively small, remove a golf ball from someones mouth and the hole is pretty effing big. Whatever, moving on. Since the big fish and their attorneys weren't going to budge, my attorneys said it was best for me to drop the case, mainly because they were no longer going to pursue it on my behalf...again, not worth their money.

I ultimately decided that the stress of the lawsuit, the reliving it, the deposition, the he said/she said, etc. was not worth my recovery. I could have continued my pursuit and found another attorney who would take the case all the way, but I decided to drop it, focus on my recovery, and simply try to move on with my life. A few thousand dollars wasn't going to bring my mouth back or erase what happened. In a way, there was some validation that the big fish's attorneys admitted neglect occurred in terms of their doctors, the rest was all bullshit, but at least they admitted they messed up. That was enough for me. My recovery was more important. I know some people thought me dropping the lawsuit was giving up in a way. That's fine if that's how they see it. I know my decision was best for me and my mental health and I have no regrets.

In many ways I have accepted and moved on from this part of the story. I decided to no longer pursue it and I'm ok with that. What does still get to me is I wish I knew what the hell happened. I wish I could hear that phone conversation again. I can't explain to you how in the hell the doctor just didn't tell me the rest of my MRI report. And as sure as I am that the sky is blue, I am just as sure that doctor didn't tell me anything about any sort of tumor, lump, abnormality, etc in that phone call! My best guess is that everything looked fine in terms of my brain, like he suspected, so he just simply stopped reading and never made it to the end of the report? I don't know. Another thing that I still struggle with is knowing that it didn't need to happen. People get cancer, people get tumors, tragic things happen and it sucks...that is the world we live in. Give me cancer, give me a tumor, give me a horrendous surgery, but don't give me the knowledge of knowing it should have and could have all been avoided had someone done their job right. Knowing that is something I still hate and still struggle with to this day. The icing on the cake was that even after the case was dismissed, I received a letter from that great big health care network here in San Diego saying I was terminated from all of their facilities and doctors. Terminated, meaning I am never allowed to see any of their doctors or have access to any of their facilities ever again. The big fish laid down the hammer on me, hard. I've since had to find all new doctors.

So this is why I talk about forgiveness so much as being part of my journey and healing. I put all of my anger, hate, struggle, pain...this entire ordeal on that one doctors shoulders for so long. I could put some of it on him, but not all of it. I have moved on and forgiven him in many ways though, the anger has most definitely subsided. There was a time when I literally wished horrible things on this man and his family for what he put me through. I am relieved to say that is no longer the case.

I came across this one day online and it hit me like a truck. It was like it was written directly for me.


One last note, I do want to stress the importance of getting copies for your own records of any medical reports, scans, x-rays, etc., which you are completely entitled to...talk about a tough lesson learned!!

If you made it to the end of this post, thank you and well done!! I know it was a long one. This was a very brief summary of what actually went on during that time. Like I said, this part is still tough for me to talk about and I tend to ramble. I am in a much better place now though.

Remember....Be thankful. Everyday.

Wednesday, March 19, 2014

Back to Basics

Once my body was out of survival mode and I actually began to process everything, I realized that this whole ordeal will have some greater impact and meaning in my life other than being a totally shit situation. I understood that if I let it, it will change me into a more whole and authentic person. How or in what way, I had no idea. But I knew it was there, I could feel it, I just didn't know how to let it in. It was like I was standing there with my arms open to the sky, yelling to the universe "I'm ready ...CHANGE ME!!" I know it doesn't actually work that way, you can't force it. I understood the intellectual concept of acceptance, what it meant, but I didn't know how to actually achieve it, how to let it in. To be perfectly honest, I'm not even sure if I know now, but one thing I do know for sure is that you cant force it. Acceptance, healing, growth....all of these things take time. I freakin' hated that answer!!! --- it takes time. I wanted it now, I wanted to learn the lessons, find the light at the end of the tunnel, and most importantly I wanted it to be over! I'm not sure if time really does heal everything, but it does help a great deal. You have to give the time some time.

I mulled over this whole 'achieving acceptance' thing for a few weeks. I asked a few friends their take on it, I even googled "how do you achieve acceptance." I wanted an answer, the 'how to' guide for acceptance and the steps that went along with it. Well good ol' google had exactly that! Duh, they have 'how to's' on everything!! I didn't use it though, but it got my wheels turning, along with things my friends said. That's the thing, what works for some people might not work for others, but its important to at least be open to all of it. I knew I had to figure it out for myself though.  One day when I was visiting my little cousins Joey and Massi, who at the time were 7 and 2, it finally clicked. I needed to be more like them. It was so simple. The keys to my recovery and getting out of the dark forest, as I would call it, were all things I learned in kindergarten. Things like forgiveness, love, kindness (not just to others, to myself as well), being gentle, being open, compassionate, etc. If I could be more like Joey and Massi I was going to find my way out of this. I look at them and they just exude love, happiness, kindness, curiosity, and acceptance. Things aren't complicated for them yet. They don't really know fear, anger or pain. There was no complicated answer or formula to find my way out, it was just back to basics. Back to things I learned when I was 5. This reminded me of one of my favorite quotes from author and spiritual teacher, Marianne Williamson, "Love is what we're born with, fear is what we learn." This is going to sound super cheesy, but a big part of acceptance is a return to love. It starts inward with yourself and then can be spread outward to other people and things.

I truly believe that nothing ever goes away until it teaches us what we need to know. I knew that if I ever wanted to move on, I needed to accept what happened and from that acceptance would come the lessons, the growth, the changes. This is definitely one of those things where its not about the destination, but the journey. I haven't fully come to terms with everything that's happened, but just because I haven't gotten there yet, doesn't mean I'm not succeeding. I am still learning, still growing, and still accepting. Every little change in perspective or a-ha moment is a major accomplishment and a major stepping stone for more to come! So be proud!

And remember...Be thankful. Everyday.

Friday, March 7, 2014

#prostheticmouthproblems

You know those times when something is so bad or so unbelievable you can either laugh or cry? I usually go with laugh. Part of that might be a defense mechanism, but part of it is also I'm just a light hearted person. Laughter sometimes really is the best medicine. Don't get me wrong, I shed some tears throughout this experience, but my mom did most of the crying for me...for everyone really. I like to think I have a pretty good sense of humor. Some people would say I'm funny, some people would say I'm a sarcastic smartass...kind of just depends on who you ask. I'm ok with either of those though, sarcasm is one of my favorite languages. As time has passed and I have grown more comfortable with my prosthetic, I've been able to joke a bit more at the whole idea of having a prosthetic mouth and all of the random situations that come along with it. Know your role though. I can joke about it, and you can laugh with me, but you can't make the jokes. Only in rare circumstances and people who I'm incredibly close with (you know who you are) can make the joke. Even then, I'll probably laugh along but still give you a look like, hey...watch it ; )

So here's a list of situations I've come across with my prosthetic where it's so random you just have to laugh. Those times when you think to yourself and the universe, REALLY?! I've dubbed it "#prostheticmouthproblems." My friends get a kick out of these anytime they happen and the hashtag just captures the humor and sarcasm of it all perfectly.

That time when you sneeze and your mouth comes out.
#prostheticmouthproblems
         
That time when you're at dinner, take a sip of wine, and it comes out your nose onto your plate.
#prostheticmouthproblems

That time when you eat a meatball sandwich and then 5 minutes later, blow your nose, and there's marinara sauce all over the kleenex.
#prostheticmouthproblems

That time when you blow your nose and you have to spit it out your mouth.
#prostheticmouthproblems

That time when you eat a piece of taffy candy and it literally crumples and bends your mouth as if it were a piece of foil.
#prostheticmouthproblems

That time you actually thought you could eat taffy candy with your mouth!
 #stupid #whatwasithinking

To better understand, you need to know what I've got going on in that mouth of mine, so here's a little breakdown: The maxilla bone (don't worry, I had never heard of it either) consists of your upper palate and upper jaw...basically the roof of your mouth. It essentially forms the boundaries for the roof of your mouth and the floor of your nose. Well, I had most of my maxilla bone removed. Now there is a big hole with nothing separating my mouth from my nose and sinuses. That's where the prosthetic comes in, it recreates that boundary or separation from my mouth and nose. Without it, I can't breathe properly, speak intelligibly, or eat and drink without it escaping through my nose. It's always in, never comes out, only to clean it... or the occasional big sneeze. It's an awkward thing to have in your mouth all the time, but it's even more awkward without it, trust me. It really is a magical little device. If I pop it out, you can barely understand a word I say, but when I pop it back in, I can instantly speak normal. It's not perfect though, obviously the seal it is meant to create is not perfectly sealed, so things still get through.

My cousin Nicole jokes that with my removable mouth, I have an awesome bar trick now. I told her, if I'm ever out at a bar and take this thing out, take me home immediately because I am obviously waaaay too drunk to be out anywhere!! Someone asked me recently how long it took me to get used to my prosthetic. I replied with, you don't get used to it,  you just choose to move on. It's a big piece of acrylic inside my mouth meant to plug up a big hole, and has a bunch of fake teeth attached to it... how do you get used to that?! It is IN my mouth!! I still notice it almost every second of the day. Anytime I eat or drink, anytime I smile, anytime I swallow, I notice it. But that's all I do, I notice it and I move on....or at least try to. I choose to laugh, I choose to be thankful, and I choose to move forward... prosthetic mouth problems and all.

#Bethankful #Everyday