Part three: WTF is wrong with this picture!? How I had to pay out-of-pocket for my brain surgery.

Now that the tumor was found, the realization of what all this could mean started to hit me. I hadn’t even thought much about the money part at this point because I had a good job with pretty good health insurance. As my symptoms got worse, and my trip to Charleston for my consultation with Dr. Patel was approaching, I started sharing with my supervisors more details about what was going on. I let them know that a brain tumor had been found and that due to its location, (geographic center of the brain), that very few surgeons would touch it. I told them about my upcoming consultation with Dr. Patel to discuss surgery as an option. A few weeks later, about a month before my consultation, I got fired. (That story could be an entire blog in itself.) I lost my job, and with it, my health insurance. WTF was I going to do now!? I freaked! I finally was going to get to see one of the leading specialists, in the world, for my kind of tumor and now I had no health insurance. I felt defeated. Not only did I have to prepare myself to travel 1200 miles to Charleston, to discuss the real possibility of having brain surgery (wtf!?), but now I had to figure out how to pay for the consultation, and, ultimately, surgery/recovery.

I cried. Ugly cried. I broke down and felt like just giving up. Wtf was I suppose to do now? After talking to friends and family, we decided that I was too close to getting real help to give up. My symptoms were getting worse, quickly. We decided that I would go ahead with the consultation. I needed answers. Also, the fact that Dr. Patel requested to see me in person, after he reviewed my scans and discussed my symptoms with me over the phone, made me believe that he wasn’t going to dismiss me and my symptoms like everyone else had. He and his staff were very clear that they would not make someone travel that distance for a face-to-face appointment if he didn’t feel that he could help. After talking to the financial office at the hospital in Charleston, as well as with other people that had had the same surgery that I was preparing for, I had a pretty good idea of what all of it was going to cost. For starters, the hospital required a $29,000 down payment BEFORE surgery. The total for surgery was estimated to be around $100,000 (surgeon fees, 3 days in hospital, anesthesiologists, hospital fees, etc). Plus, we had to travel 1200 miles, one-way, to Charleston for surgery. It was also suggested that we stay in Charleston for around 2 weeks, until after the follow up visit and staple removal, to be cleared to go home. So add the expenses of room and board, food, etc. for myself and my family.

I remember sitting down and writing out the list of all estimated expenses. I sat and stared at it for a long time. All I could think was “how in the f@&k are we going to do this!? Was this really what it came down to? My life as a price tag? WTF!”

So what did we do? Everything we could! We dropped our egos and asked for help!We launched a full on fundraising adventure. I set up a GoFundMe campaign explaining my situation and shared it with everyone I knew. We planned a benefit with a spaghetti supper, live music, and silent auction. We called, emailed, and sent letters to churches, organizations (American Legion, Elks, Eagles, United Way, etc), radio stations, and television stations. We asked businesses for donations for the auction. We had fundraiser nights at local restaurants (Taco Bell and Pizza Ranch). I designed a brain tumor symptom awareness logo and sold T-shirts and hoodies with the logo on it. The amount of support that I received was amazing and overwhelming. I sold shirts and hoodies all over the USA and even in a few other countries. The biggest support came from my parents. My mom cashed out part of her retirement to make sure the $29,000 down payment was taken care of so surgery could be scheduled. It took a LOT of work and the fundraising continued even after surgery. The hospital offered a discount for self-pay patients and we were able to set up a payment plan for the remainder of their bill.

So what in the actual f@$k is wrong with these companies, and especially the health care system?! Without the help and support of family, friends, and strangers, there is a real possibility that I may not even be here to tell my story today. We aren’t “patients”, we are customers. They put a price tag on our illnesses and recovery as if they are an option. Can’t pay? Live with the symptoms then. Until you can’t even afford to do that. People, many that I don’t even know, helped save my life when the health care system was complacent in the reality that my tumor could kill me. What the f&$k is wrong with this picture?!

In part four, I will talk all about the trip to Charleston for surgery/follow up, how I had a mental break down half way there and wanted to come home, and how i spread awareness and free art the entire way there and back.

Thanks for reading and stay tuned for Part four: WTF am I getting ready to do!? I can do this! No I can’t! Ok, here we go!

It began with a “WTF!?”…and they just kept coming. The story of my Pineal Tumor journey.

Part Two: “WTF is wrong with these doctors!?” – How I had to find my own help.

Do you remember that Abbott and Costello routine, “Who’s on first?”? Well that is how this visit with the neurologist went. He told me that the MRI showed no lesions or other signs of MS. Then he tells me that my results were mostly normal, except for a “small mass in the center of your brain”. More specifically, they found a marble-size mass on my Pineal Gland, which is geographic center of the brain.He then told me that this is a rare type of tumor and that they rarely cause symptoms, so it isn’t the issue. (This would be the first “wtf?” of many this visit.) Here is how the next portion of the conversation went:

Dr: It is an incidental finding. We will just monitor it with an MRI in a year or so.

Me: What does “incidental finding” mean?

Dr: Means we were looking for something else.

Me: Weren’t we looking for what is causing all of my symptoms?

Dr: Yes. But this is a rare type of tumor and they rarely cause symptoms. So it can’t be what we were looking for.

Me: (silent “wtf”)But some of these tumors do cause symptoms?

Dr: Only the rare ones.

Me: And I have the tumor and a bunch of symptoms that it could cause?

Dr. Yes. But your isn’t causing the symptoms. It is very rare that they do.

Me:(another silent “wtf”) So I have a bunch of symptoms that we have ruled out all other causes for? And I have a tumor that can rarely cause these symptoms?

Dr: Well, yes. But we are going to keep looking because this was just an incidental find. Not the cause we are looking for.

Me: (under my breath “wtf”) Ok, So what do we test for next?

Dr: Well, since we have ruled pretty much everything out, we will just have to manage your symptoms as they come and do a follow up MRI in a year.

Me: So we have ruled out everything? But we found a tumor!? How can you be so sure the tumor isn’t the cause? I could have a rare one. I have symptoms.

Dr: It isn’t the tumor. It was just an incidental finding.

Me: WTF!?

As if that conversation wasn’t bad enough, I had to pretty much beg to even see the MRI of the tumor. He acted annoyed that he had to show me and had it on the screen for maybe 10 seconds.

I, of course, got a second opinion. And third. They were all equally as helpful and frustrating as the first. All insisted that this rare type of mass couldn’t be the cause of my symptoms, even though they could offer no other possible explanation at this point. WTF is wrong with these doctors!? I was lucky and found a group of amazing people on Facebook that have/had the same tumor as I did. Similar symptoms, similar stories. Through them, I found Dr. Patel and Dr. Kim, two of the leading specialists in the world for these kind of rare tumors. I contacted both and sent my MRIs and summary of symptoms. Both offices contacted me back within a week and suggested in-person consultations. In October of 2018, I went on a 1200-mile road trip to Charleston, SC to meet with Dr. Patel. He explained that these types of tumors can and do, in fact, cause issues. He not only showed me my MRI, but explained how the tumor could be pushing on other parts and causing pressure around it in my brain. For the first time, I felt listened to. Not disregarded as having mystery symptoms with no possible cause. He explained that the tumor was probably growing based on how quickly my symptoms had been progressing. He felt that it was careless of the other doctors to suggest waiting a year before even doing another scan. Any tumor that is symptomatic should be monitored every three months at least. He suggested surgical removal of the tumor and explained the procedure to me. I left there with thoughts racing. Thoughts of relief and hope. Finally, I can get real help. I’m not crazy. The symptoms are real. The tumor is real. Thoughts of hope turned to thoughts of frustration and anger. What in the actual f@&k is wrong with these doctors!? They were going to keep dismissing me until I was blind and in a wheelchair. How much bigger would the tumor have been in a year, if I was even still here? How could they not even consider the tumor as the cause? Is it really easier to let me continue to suffer than to admit that they might be wrong about the tumor? Too many of us get pushed aside and told to “manage and monitor”. Too many of us get told that the tumor isn’t causing the symptoms that we clearly have. There are doctors that understand these tumors and will help. We just have to take matters into our hands and contact them ourselves. We have to advocate for ourselves and listen to our bodies. I had a decision to make. One that I never thought I’d have to think about. I could have brain surgery to remove the tumor by the end of the year. I could have brain surgery. Brain surgery!? WTF!?

Stay tuned for Part Three: “WTF is wrong with these companies!?”- How I had raise money to pay for my own brain surgery.

It began with a “WTF?!”…and they just kept coming. The story of my Pineal Tumor journey.

Part One: “WTF is wrong with me?!” Finding the tumor.

I have always been an active person. Not an athlete by any means, but overall pretty fit and healthy. I loved summer and being out in the sun. One hot, sunny day, I was walking the track at the football field across the street from where I lived. This was something I did almost daily. But this time, something changed. I was walking my usual speed, had my headphones in and my water bottle in my hand. I was on lap 3 or 4, heart rate started to rise a little, and my legs started shaking. At first it was just an odd sensation, kind of like having the chills. I stopped and tried to shake it off. But when I started walking again, the shaking got worse. A lot worse. I couldn’t stop the shaking and my legs wouldn’t hold my body up any more. I had to sit down and wait until my heart rate lowered and I cooled off before the shaking stopped. I sat there thinking, “WTF was that?”. I went back to walk the next day, even though it was a little chilly outside, and didn’t have any issues. I wondered if I had over reacted or imagined it. A week or so later, on a bright sunny day, my kids and I went to walk around the pond near our house. My eyes kept watering and it was difficult to keep them open. The light hurt my eyes. I had sunglasses on and I still couldn’t hardly handle to be outside. Once again I had to ask myself, “WTF!?”. I broke down and went to the doctor. After a short visit, and not much concern, I was told it was probably just from Migraine and Anxiety. Soon after, new “wtf?” symptoms started popping up: balance issues, stuttering, having trouble finding words, sleep issues, tremors in my hands, focal seizures, ringing and buzzing in my ears 24/7, constipation, severe pressure headaches that wouldn’t go away, and so many more. As new symptoms showed up, my doctor began discussing the possibility of autoimmune issues or a deficiency. So we began the process of ruling things out. Multiple blood tests, sleep study, EEG. We systematically ruled out things that could be causing all of my issues. After 5 years (seriously) of testing and managing symptoms as they came, I got pregnant. During pregnancy, many of my symptoms got better or went away all together. When my son was about 5 months old, they ALL came back. Worse and with new ones. I would get vertigo just walking around. My light sensitivity got way worse, I couldn’t even be outside when it was cloudy. I sat and cried, wondering “WTF is going on!?”. Doctors decided that it was looking like possible MS. They finally decided to do an MRI to check for lesions and move forward with the MS diagnosis. As I waited for the MRI results, I kept wondering what life with MS was going to be like. Preparing myself for actually hearing the words. Only that isn’t what the MRI showed. The MRI showed a “10mm mass on the Pineal Gland”. As I am listening to the neurologist tell me that i have a brain tumor, I felt the most emotional and heavy “WHAT THE F@&K!?” that I have ever felt in my entire life. Well, at least up to that point. You would think that finding the cause of my symptoms would be the beginning of the healing. But, unfortunately, you would be wrong. My battle was just getting started. Check out Part Two: “WTF is wrong with these doctors!?” How I had to take my care into my own hands. Coming soon.

Back to Charleston- 1 year later…

December 10th was my one-year cranioversary! One entire year since surgery! What!? What a year it has been. I flew to Charleston for my one year post op visit. Exactly one year after the day of brain surgery, I got to visit one of the beaches that we went to last year. Only it was different this time. Such a bittersweet moment. Emotions hadn’t gotten to me until I stood at the water’s edge and reflected on what this last year has taught me and how much things have changed. I cried. Ugly cried. But it felt fantastic. I shed my pain and sent my salty tears back home to the ocean. I’m healing. Of course I spread free art and awareness all along my trip. Everywhere I went someone learned what a Pineal Tumor is and how serious they can be. Crazy how strangers understand more than most medical professionals. My appointment went well. No new growth had shown up. I still have a few lingering issues: brain fatigue, vision issues, some tremors, hardware pain and loose screw (literally). But it is to be expected and, overall, I stronger and healthier. I’m making progress every day. Even on the days I feel like I have slid backwards and just can’t. I’m learning how to embrace my new self. Progress not perfection is the name of the game. I’m excited to see what this next year brings.

She sleeps…

I can catch glimpses of the “old me” from time to time. She is in there still…sleeping. Since the removal of my brain tumor and Pineal Gland, I have struggled with my thoughts. I have struggled to accept that I don’t like some of the same things. I have struggled to accept that I feel things differently. I struggle to accept my new limitations. I get upset and frustrated with myself. I catch myself saying, “you used to be able to” or “you used to like this”. I am different. But the “old me” isn’t completely gone. I am now a hybrid of the parts of me that survived and the new parts that are filling in the gaps.

Shadow-Moey

So sorry that Moey has been relatively MIA for a while. I have been struggling with accepting a few things since brain surgery. It is difficult to explain to someone what it is like to go through such a procedure and what all the tumor took away from me. Not just physically, but emotionally, mentally, and spiritually. This picture evokes a lot of emotion. I feel, often times, as if I am a shadow version of my old self. Parts are still there, below the surface, but struggle to come into the light. I feel grainy and scrambled. Always searching for my footing so I can feel sturdy and sure again. Finding motivation to create has been tough for me these last few months. Vision issues and tremors and depression and balance issues and and and…

BUT, I can feel a shift! I have been broken into pieces by this brain tumor and craniotomy. Recovery is brutal. But if I get to put my pieces together, then I get to decide what pieces go back and what new pieces I have room for. Lots has been happening. There are new photos from my trips to Chicago, brain injury induced rantings, new awareness stickers designs, a new #pinealslaptheworld movement, new Etsy and Threadless store items, and new ideas for art projects flowing around in this crazy brain of mine. Stay tuned!

Where words fail… art shall speak.

Life is a journey. Art is my guide. Come along!

Denver was the vacation I needed. There was motivation everywhere! I am posting several new photos in the next day or two and have some fantastic ideas for new multimedia pieces in the works. Denver was refreshing. I want to go back soon.

Happy St. Patrick’s Day!

Aeroplane to Denver

In 9 hours, I will be on a plane . In 13 hours, I will be in Denver! So excited! New art coming soon!

Before we know it, we will be running the AC. Loving the Spring weather today.