Friday, February 21, 2014

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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  1. You are right benign means nothing to us this is a life long battle and the chronic pain is unimaginable. Good luck. One day at a time

    1. Erica, thank you for your reply. This is a lifelong battle. I wish I had known that in the beginning, but there hasn't been much informaion until the past few years. Even the doctors didn't know much. Benign means nothing with this illness. But at least there is more research available today!