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!