I Learned to Love my Scars at Phoenix Comic-Con.

         

      Comic-Con is a magical place that allows for both children and adults to release their inner dork and let loose for a long weekend without caring what anyone thinks of them. This is the time when adults get in touch with their inner child, meet some of their favorite actors from years gone by, and spend several days dressing as the characters of their favorite TV shows, movies, or even books. Outsiders look at us and see a freak fest and they may be right, but we don’t care. We live for this weekend; we look forward to it all year. We spend months designing and creating our costumes and planning out our schedules so we can see everyone and everything we want to see. It’s like Halloween but instead of candy you get to get a picture with Leonard Nimoy and have drinks with the cast of Battlestar Galactica!
       
         Last year was a bit difficult for me at the convention. I had just had surgery number five and this added another nasty scar to my body. So now I had three huge scars on my back, several chest tube scars on my sides, a tracheotomy scar and now a huge nasty scar on my belly that went from just under my breasts to my belly button. The scar was also very fresh. My surgery had only been a few months before and I’m pretty sure that the resident they let stitch me up had never threaded a needle before in his life. The scar was gross!

            Now I could keep the scar covered up, but this was summer in Phoenix and if you aren’t familiar with the weather in AZ, it is HOT! I don't usually go showing off my belly anymore, I'm in my 30's, but I do like to wear a bikini to the pool. I had purchased a tankini so that my stomach wouldn’t show at the pool, but my neck and back were still visible, there was nothing to be done about this. But if I kept in the water of near the wall, no one would really see the scars. MY biggest problem was Saturday. Saturday is the day that you pull out your best costume and show it off. This year my costume was the Orion slave woman (the green woman from Star Trek). This costume showed off my stomach, and it showed off my nasty scar.

Photo Taken by Angela Nickell

                Now I was not out to impress anyone, I am happily married and my husband is not bothered by my scars, but I was not yet OK with them, at least not all of them, especially the new one. I felt that they were a reminder of times I wanted to forget. They reminded me of the day the doctors found a tumor on my spine. They reminded me of being in a foreign country, being sick and in pain, and not speaking the language with a nurse telling me that I probably had cancer and was going to die. These scars reminded me of the five surgeries that I have already had trying to get rid of this tumor, the tumor that just didn’t understand it wasn’t wanted. The scars reminded me of the day I woke from surgery, only to be told that they couldn’t get the tumor out and no one knew how to proceed. They reminded me of 8 weeks of radiation and being horribly sick, not being able to eat anything because the radiation was so close to my esophagus that it caused severe heart burn, it was so bad that I had to drink a "magic potion" that contained lidocaine in order to feel better (it did help a little). These scars reminded me of waking up after my three day coma, not knowing where I was, trying to rip out the breathing tube because I didn’t know what it was. These scars reminded me of not recognizing my family after I came out of this coma, and thinking that everyone in the room was trying to kill me. These scars reminded me of having pneumonia while still having an open trach-stoma.  There is nothing quite like coughing up pneumonia goo out of your throat hole! These scars reminded me of how I almost died. I hated my scars and what they represented. I didn't want to show them off but I had chosen a costume that showed off my belly, so what was I to do?

                I didn’t have a backup costume and I was ready to just pack up the costume and forget about Saturday, but fortunately I have a very supportive husband. He tried to tell me that no one would notice. I wasn’t falling for that one, if anyone was looking at me, they would see the scar. So he then reminded me that I would probably never see most of these people again and that if they were that offended by my scars, they had could look away. He told me how much he loved me and that no matter how many scars I had, he thought I was beautiful. And really, isn't that all that matters? The person that matters the most in my life still loved me and wanted to be with me, no matter how many times they cut into me, he still saw me as beautiful. He reminded me that it didn’t matter what anyone else thought; they didn’t know my story and their opinions didn’t matter. Their opinions certainly shouldn’t have any bearing on my self-esteem or my costume choices. This was Comicon and we were there to have fun. We weren’t there to think of my scars, how I got them, or what other people might think. We were there for fun. And if anyone else didn’t like it, they didn’t have to look.

            So we spent the next hour and a half painting my body green (I underestimated how long it would take to get a clean coat of green paint on my body, we missed the first panel of the day), and I put on my costume and it was amazing! There were a ton of people that stopped me. Not because they wanted to ask about my scar or tell me to cover it up, but they wanted to get a picture. They loved my costume and apparently many thought that it was one of the best Orion costumes they had seen in a long time and just like that I forgot about my scars and took a picture with anyone who wanted one!

                That was the day that I accepted that my scars were just part of who I am now. I have put my bikini back into rotation although, I usually wear still wear the tank-ini, but that’s not because I am afraid of what people will say when they see my scar, I’m afraid that I’ll get the scar sunburned and sunburned scars are not fun. My scars are there, they will never go away. I have had people ask if my insurance will cover plastic surgery, or sometimes I’m asked why I don’t cover them all up. My answers are, I don’t know, and because I don’t want to walk around in a burka. I have scars, my back is a mess and my stomach looks like I survived an alien jumping out of it at a space diner, and I look like someone tried to slit my throat at some point.

                It seems appropriate that I came to accept my scars at Comic-con. While most outsiders think of Comic-con as a giant freak fest, it is really a place where you can go and be yourself, your best self, your fun self, the self that you never let anyone else see. This is the place where you can let the "true you" out. Comic-con is a place that if you are walking down the hallway and you see a 5’2” man who weighs 200 pounds in a slave Leia costume, you won’t judge him. Instead you will just cross off that box on your Comicon Bingo card. Comicon is a place of acceptance and while there are always a handful of catty and nasty people, there always will be no matter where you go, but the true spirit of the event is to share your passions with others who are just as much of a nerd and freak as you are! It's showing the world who you really are, scars and all.

                Over the past few years I have grown to accept my scars. The rest of the world doesn’t have to, but they don’t have to live with these scars, I do. I no longer think of my scars as reminders of a tougher time, instead, they are a reminder of the day that I survived. They show the world that I beat the odds. These scars are a reminder that I proved them all wrong. I fought, and I won! These scars remind me just how strong I am and that no matter what life throws at me, I can take it, I am a survivor. The scars aren’t ugly, not to me. These scars are a symbol of hope and strength. I am someone that will fight like hell for what I want.  I should be dead; I was not expected to make it to 31. I was either going to die on the operating table or suffocate to death as my tumor grew so large that it crushed my airway and I could no longer breath. This year I will celebrate my 36th birthday and I will celebrate that birthday because of these scars! These scars remind me that I am stronger than all of the trials that life throws at me! My scars are beautiful and so am I.


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Turning Away, We All Need Friends Like This!

                I wanted to give a shout out to my friends Blog today. I didn't realize that she had posted this, but I'm glad she did. She has been so supportive of me and everything that I've been going thru. Ever since I found out that the tumor had come back. She dropped everything and came over to my house, and hour away, and sat with me until the middle of the night, she pushed me thru the mall in a wheel chair with no feet in the middle of Christmas (I wouldn't recommend that), despite her family obligations she has been there for everything that I needed over the past few years. While this is a short Blog post, I will post a real one later.
             
                 Last month she saw an op-ed piece about someone who was offended about a woman who Blogged and tweeted about her condition. She sent me what she wrote in response; unfortunately the original post was removed before she could post her comment. I of course got choked up at her devotion to me and my plight. There is nothing as heartwarming as a true friend that is ready to go head to head with a crazy person over you. Please take some time to read her blog, maybe even follow it; she has some interesting things to say. True friends come out when we are in our darkest hours, and the better ones stick around long after. So please read her blog post. I'm sure that many of you have a friend like this and if not, I suggest that you find one fast!

 Turning Away Click Me, Click Me!!!!  Please take a few minutes to read, it'll be worth your time!

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To Be Or Not To Benign, Does it Really Matter?

            For those of us who have gone thru the ordeal of getting the diagnosis of GCT, the first time around all we can think about is, is it cancer? Will it be benign, please God be benign. As laymen we often associate the term benign with not deadly, a tumor that will not ruin our body, something that will be a quick fix and go away. That is after our first diagnosis. Those of us with recurring GCT have learned that benign does not mean any of these things, and depending on who you talk to, it doesn’t mean it isn’t cancer. Once we are on our second our third biopsy, we don’t care if it is benign or not. We know the damage that it can do, we know the pain that it can cause, we know that we are sick and many of us just go ahead with the cancer label. Why? Because when we tell someone it is benign, they look at us and say, “At least it isn’t cancer”. That is the worst thing you can hear from someone who cares about you.  This prompts many of us to think, I wish it was cancer, because maybe, if it was cancer, maybe then it would be taken a little more seriously. 

            GCT is considered a locally aggressive tumor. They tend to be located in one spot and that is it. If it is in your leg it stays there. If it is in your arm, it stays there, but not always. For a small percentage of us, the tumor will spread to the lung. I was one of those lucky people. My tumor came back after two years and was so large that it could not be removed. It had attached itself to the heart and the aorta; it had the mother of all blood supplies. This thing was the size of a softball and it wasn’t getting any smaller. Eventually nodules began to grow inside my right lung as well. This non-cancerous tumor was not supposed to do that. Then I was told that nothing could be done. My benign tumor was going to kill me. I was most likely going to suffocate to death.

            Some of us are lucky enough to have our tumors come back and visit multiple times.  We get to the point that we don’t have a tumor, we are sick. We now have Giant Cell Tumor Disease. We have a bone disorder in which the cells just don’t seem to get the memo to stop making these giant cells. We will be undergoing observation and treatments for the rest of our lives. After several surgeries we realize that we will never be normal again. Some of us, even with no recurrence for a couple of years are living in chronic pain. We have had to give up many of the things we love, like sleep. It is now 1:34 in the morning and I can’t sleep. The pain killers do little to help. They do help, it is much worse without them, but I don’t sleep.  I am currently waiting to get an appointment with a pain clinic, but they have told me that there may be nothing they can do to help; this may be the rest of my life. I have good days and bad weeks. I have moments where I think I’m going to be normal and then I’m in bed for days on end. I am told by friends and family to get out and exercise, that will make it all better. I am told I am taking too many pills, I am told many things by many people. All of whom have the best of intentions, but have no idea what they are talking about, including the young ER doc that just got his degree and thinks himself an expert on all things medicine.

            I am lucky to have a very supportive Oncology team. They understand that I am in chronic and often debilitating pain. They do everything they can to keep my pain to a minimum while keeping me from being a drooling, drugged out zombie. Although sometimes the latter isn’t possible, however, when the pain gets bad enough for an ER trip (every few months) I have to fight with these doctors who are so accustomed to seeing people come in only for drugs. Now, I will admit, I am there for drugs, but being treated as a common drug addict when I have a chronic illness is horrible. I see the looks, I hear them talking after to each other, I know they are judging me, even when they are kind enough to try and keep their judgments hidden from me. Which rarely happens.

               My last trip, the triage nurse asked me what medication I was taking, I don’t bother lying to the doctors, they can look it up and it doesn’t help. I told her I was on Vicodin and she looked at me and said, “Oh, so you ran out of Vicodin”. I pulled out the bottle and showed her I had plenty. Later after seeing my X-rays, she came back in after requesting that they prescribe me a higher dose of dilaudid and was so nice to me. She couldn’t believe how much hardware I had and couldn’t imagine how much pain I must be in. Thanks lady; that would have been helpful 2 hours ago. One time I was in so much pain and they couldn’t get it under control, they didn’t have a room for me and I was crying uncontrollably in the ER hallway, dignified, I know. The nurse came over to me and told me I would have to go home as I was making the patients uncomfortable. Thank God the doctor, who was familiar with my case, heard her say this. It’s hard to stay too mad because I know that many people come in and say the same things that I do just to get morphine and a bottle of oxy, also, when I cry it sounds horribly fake. The difference is if I want oxy I will ask my Oncology team. If I get if from the ER my oncologist will know before the next day anyhow. It’s less of a fight and I get the right dosage going thru Oncology.

           So this is my benign tumor. I have had my insides rearranged multiple times, I am in chronic debilitating pain, and I often have to forgo many things that I love, including shopping, hiking, camping and sleep. I am missing bones and parts of organs, I will be undergoing treatments for the rest of my life and I am no longer in a panic when they stick me in the MRI tube. It is automatically assumed at the ER that I am a lying, drug seeking junkie, and oh yeah, I was turned down for life insurance because get this, I have cancer. 

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Ice Chips?

                After my fourth surgery, one of the worst parts for me (once I regained consciousness) was my inability to communicate. Due to post-surgical complications the doctors had to perform a tracheotomy; this required me to learn how to talk with a hole in my throat. It isn’t as easy as one might think. For a while there was no sound, and then, even though I felt as though I was shouting, only slight whispers were able to be heard.  To make matters worse, I did not have the dexterity to write so I couldn’t spell out what I wanted. I was able to write letters, but I couldn’t move the pen to the right, so every subsequent letter would be written on top of the previous letter. This may have been easier for people to read if I didn’t already have such atrocious handwriting.

These Taste Terrible!! Yuck!

                Because I was on a feeding tube, I was never hungry, at least not that I can remember. I wasn’t actually thirsty either since I had an IV. However, one major side effect from heavy sedation and narcotics is dry mouth. I constantly wanted to drink something, anything. Actually, to be more accurate, I wanted to chug a gallon of ice water at any given moment. This was not however, possible.  Since I had a hole in my throat I was not allowed to have water yet. I had to learn how to swallow again first. The best they could do was ice chips, or those horrible mint flavored water sponges that they will give you to moisten your mouth after surgery. If you have never had the dis-pleasure, they taste horrible, but it alleviates the dry mouth for about 5 seconds. When they would give me those I would suck all the water out of them (there isn’t very much there, less than a sip) and then try and swallow it, if I could get more than one of them at a time, I almost had a drink of water! Once the staff caught on I wasn’t allowed to keep them by my bed any longer and they would watch me to make sure that I didn’t save them to use when I had more than one. I would also try and wait for the ice chips in my cup to melt and then drink the small amount of water. Needless to say, they were not very happy with me and I required a babysitter most of the time.

                Since I couldn’t communicate very well and usually what I wanted was water, it became a running joke, whenever my husband or sister couldn’t figure out what I wanted, they would just look at me and ask, “Ice Chips?”  (To this day, when my husband has no idea what I’m talking about, he will look at me and say, “Ice Chips?”) Eventually I would usually just nod my head, even if that wasn’t what I wanted. It would frustrate me to no end and I know now that everyone around me was frustrated, even thru their laughter. It seemed insensitive at the time, but sometimes you get to the point where if you don’t laugh, all you can do is cry, and I really didn’t need my support system in tears with me! That would have been something. 

                Every now and then one of my oncology nurses, Cheryl, will tell the story of when she came up to see me in the ICU. I was trying to ask for something. Of course I was thirsty and the first question asked was ice chips, so was the 20^th. I think at some point I started flipping people off. This required me using one hand to hold down the other fingers as I was not quite able to hold up my middle finger on its own yet.  Cheryl had brought in a letter board. If you don’t know what that is, it’s a board with letters on it. This allows for the person holding it to go thru pointing at the letters and when you get to the letter that is next in the word the patient wants they signal to stop. 

                So She went thru the first fast: A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P. I signaled to stop and someone wrote down the letter P. then a few people started guessing and of course someone yells out, “Ice chips” I think it was my sister. We went thru pass two: A, B,C,D,E. I signaled again to stop. So the letter e was written down. They asked if I needed to pee. I shook my head. When no one could come up with an idea, once again ,”Ice chips” I’m sure I rolled my eyes, or meant to if I wasn’t able to. So we go for pass three: A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P. I signaled once again to stop.  At this point it was either my Oncologist or my nurse (I wish I could remember) who realized that I wanted a Pepsi! Everyone started laughing. This was taken as a good sign. I was told no. I am told that I then glared and was very unhappy with Cheryl; I may have even used both hands to once again display my middle finger. I guess I had expected her to run off to the vending machines and sneak a Pepsi in for me. Once I was able to swallow again, my wonderful nurse did bring me a Pepsi. It’s amazing how when life really sucks, it is the simple things that can really make our day; sometimes all you need is a Pepsi.

***LESSON FROM THIS EXPERIENCE***

Language is not just a useful tool, but an incredible gift. I have been in other countries where I didn’t understand the language well, and some where I didn’t understand the language at all. Some of these times were made more difficult when the people around me also did not understand or speak English. However, even during these times, there were ways to communicate: body language, drawing a picture, or even had gestures. When you have no means of communication other than grunts and a limited amount of very basic hand motions, communication becomes nearly impossible. It’s no wonder the cavemen eventually just clubbed their women over the head to drag them back to the cave. It’s difficult enough to get a date in modern society with advanced language skills and socially accepted mating rituals, but imagine if the only way you had to talk to the opposite sex was a few grunts and limited hand gestures. Eventually clubbing someone over the head is all you got!

As always, please feel free to leave comments. Your feedback is always welcome!

Diagnosed in Japanese

                When I was 27 years old I moved to Japan to see if things would work out with the man I love. ***Spoiler Alert*** It did.  I am so fortunate that I did because if I hadn’t been with him after everything started to go downhill, who knows how things might have turned out. I’m not sure just how long I had been in Japan when I got sick, but it had been at least a few months. If I got out my passport I could narrow it down to a week, but it really isn’t that important.  While in Japan we decided to take a trip to Guam. While there we were playing water volleyball and when I dove for the ball I remember feeling a pop. That’s about when everything started to go wrong. The pain wasn’t that bad and I honestly thought that I had just pulled something. But after a few months of pain it became apparent that it was more. 

                I began having spasms in my chest. They tickled, but hurt at the same time. The pain only got worse as each day went on. A friend recommended a chiropractor and I thought, why not. It seemed to help, but only for a day or two. Then I went back to visit my family. My father was retiring from the Navy so I was staying at my parents’ home for a few weeks.  I remember waking up one morning and as I went down the stairs, I slipped. I hit the bottom three stairs with my rear end. Thunk, thunk, thunk. It hurt, it hurt incredibly badly. This did not make the rest of my visit very pleasant. 

                After returning to Japan, I went to the chiropractor. I told him that I had fallen down the stairs and he insisted that I had x-rays done before he did anything to my spine. (Something to be noted here, in Japan chiropractors are not allowed to use X-rays, you must bring them in from somewhere else.)  He was afraid that I might have a compression fracture. Since he couldn’t use x-rays, he took out a tuning fork, like the kind you use on a piano, and he hit the fork on the table and placed it near my spine. He continued to move it lower until I let out a scream.  The x-rays later proved that was where my fracture was. Apparently this little trick is taught in chiropractor school, but even the doc’s teacher was surprised to find out that it actually worked!

                My husband took me to the hospital and they did x-rays. They verified a compression fracture, gave me Motrin and told me to stay off my feet.  About two weeks later I got out of bed and collapsed. I was in so much pain that I couldn’t even hold myself up. This earned me another trip to the hospital. This trip was not very fun at all. The roads were full of pot holes and with every bump I felt so much pain that I would vomit. When we got to the hospital they informed us that the orthopedic doctor was not in. I sat down in tears, I was not going back home. They finally found someone who would see me. They decided to order an MRI. Unfortunately I had to be transferred somewhere else for this. They took me by ambulance and my husband followed. While in transit it was learned that the MRI machine at our destination was broken so we were re-routed. My husband did not know what hospital we were going, but attempted to follow the ambulance. We were separated as we could go thru red lights and he could not. I was at the hospital for a few hours alone while my husband tried to figure out where I was. In that time they did an MRI and then a full body scan. The more tests they ran, the more concerned I got. I became incredibly stressed out and it did not help that I only knew about 5 words in Japanese and none of them would help me in a hospital setting. 

                Eventually someone came in, they gave me an IV with saline and Motrin (They don’t like to prescribe heavy drugs it seems) and then they gave me some valium. Due to the language barrier, they were not sure if I was in pain or if I was anxious. I was both. A doctor finally came in and told me that they found a tumor on my spine. This was the worst possible time for me to be alone, I cried for what seemed like an eternity.  Eventually my husband found me and when he got to me I told him that they found a tumor. Apparently they had not informed him what they had found. Because he thought that I was just stressed and making a joke, so he did the Arnold Schwarzenegger, “It’s not a tumor” line. He was so lucky I couldn’t throw anything.  We can laugh about it now, because it’s funny, but it certainly wasn’t funny in that moment. It really was a tumor. I was in a foreign country where I didn’t speak the language, in pain, and had just been told that I had a tumor on my spine that just might be cancer. It was turning out to be a very bad day.

                Since then, my body has been ravaged by an illness that most people have never even heard of. I have had 5 spinal thoracic surgeries in 6 years. One of these also happened to be an abdominal surgery as well. My back looks like the start of a road map and my stomach looks like someone sliced right down the center of it, probably because someone did. I have scars from a multitude of chest tubes on both sides of my chest and stretch marks from the multiple occasions of rapid weight loss due to the sickness associated with radiation, and surgeries. I have had multiple thoracotomies, a rib removed, half my right lung taken out and a vertebrate removed and replaced by a metal cage filled with crushed up bits of part of one of my ribs. Oh, and then there is the tracheotomy scar on my neck. Did I mention that I’m only 35 years old?

                I have eight years of stories about living with GCT. Some of these stories are funny, some scary, some strange, and some are just plain terrifying. This was my first story, this was my first day. This was the day that changed my life forever.  I’m going to tell you my best stories. So welcome to my life of living with Giant Cell Tumor. Hang on; it’s been a crazy few years!