These past several months have been very stressful for me. It has been a roller coaster ride as far as stress goes. My peak stress would be when I was being diagnosed. Uncertainty is something I really don't like. None of us do. And back then there was so much of it. I was thrown into a world where I knew very little. I had never even heard of a sarcoma before, and in just a few weeks from my first appointment I would find out that my "arm strain" was really an aggressive bone cancer. Believe it or not, my stress dropped a lot when I found out the diagnosis. I finally knew what was wrong with me, and I was ready to do whatever possible to be cured. I was more stressed during the first three cycles, and surgery than these past three cycles. I would be constantly feeling my arm to verify that the tumor was shrinking. My fear of the treatment not working was obsessive. After surgery I hit a low in stress over the past year. The cancer was out, scans were clear, surgery went well, and I had just three more cycles left of chemo. Over these last three cycles I have seen my stress progressively increase. The fear of leaving active treatment is scary. When I had treatment ahead of me I felt more secure than I do now. The completion of treatment creates one devastating question. A question that just isn't going to go away for a long time. Will the cancer come back? The stress is getting worse at a faster rate each day. Now that I know my scan date of April 4th, I am already getting that scanxiety. I'm not going to read my results online when they become available this time. I don't want to get myself worked up over nothing like the last time.
I don't really enjoy explaining this, but its an aspect of this cancer that has really bothered me since the beginning, and as followers of this blog I think you should know this. I'm going to explain this once, and really simple here.You may remember a few posts back when I discussed Ewing's Sarcoma in great detail. Metastatic disease at diagnosis is really bad. It is the biggest factor when it comes to the prognosis of this disease. Want to know what's just as bad if not worse than that? A recurrence. When this disease recurs it will most likely be in the lungs or other bones. In my particular case I have about a 10% chance of this recurring. I'm not sure I like that number, but I'll take what I get. It could be worse I guess. I just don't like the idea of playing Russian Roulette every few months when I have scans. If this is going to recur it's going to most of the time happen in the first two years so it will become less stressful with each clean scan.
To sum up that last paragraph...I have very good reason to feel scared, especially when I'm anticipating scans. If I didn't feel this way then there's something wrong with me. I'm very well informed of what this disease can do in reading news articles, and other Ewing's blogs. I'm well prepared to take on anything that happens, but let's just hope that my post on Wednesday is my last regarding treatment.
I think that the only thing I have to combat this stress is to ask myself one simple question...Has the treatment been a success so far? The answer is yes. As far as I know the cancer is all gone. That's only current as of November, but I haven't had any scans since then to disprove that.
There is one last thing I want to talk about here. It's something I ask of you.
You're going to be alright. Please don't say this to me. Unless of course you have seen the future then don't say this to me. I know that you mean well, but you, and I both don't know what the future may bring. Here's the reason why I really don't like to be told this. In the beginning when I was going through the works of tests to see what was going on in my arm I heard this so many times. Everyone was telling me that I didn't have cancer, especially bone cancer, that it was just a muscle strain back then. At first I ignored it, but after being told this so many times I finally gave in and started to actually believe that I was just going to have some benign tumor. Then the mri results came in, and quickly brought me back to reality. There was not one good line of text on that page. I remember coming home from that appointment really resenting all of you for fooling me into believing that all was going to be ok on that test. Telling me this over and over again when I was worrying only made it more painful for me when bad news struck. So again please don't think that you're going to magically make me feel less stressed by telling me that my scans are going to be clear, and I'm going to be alright because you don't know that. I'm very stubborn in my way of thinking, and you're not going to change that. The only thing that both you and I can do is pray, and hope for the best.
I just finished treatment, and this blog post discusses things that aren't too cheerful. I'm sorry if you were expecting me to feel different, but if you've been reading this blog then you should know that this blog is as real as it gets. This is how I feel right now. These fears have always been in my mind since the start, but now that I'm finished they are now much more apparent. I feel like getting this information on here is really necessary because it helps you better understand what I'm going through.
Mike, I want to thank you for your honesty. It is incredibly helpful that you write what you really are thinking and feeling, especially since I can relate to how you are feeling. It's really nice to feel that we are not alone in how we feel or in our fears. Over the summer my brother will be starting "the gap" between the end of treatment and the results of the first scan, and I'm already beginning to feel the anxiety of not actively doing anything to treat the cancer. Beyond that, all of the "what ifs" that we will be experiencing for the upcoming years after treatment ends.
ReplyDeleteI understand what you mean about people saying that everything is going to be fine. It can be very frustrating when you need emotional support but instead only experience people who either reject possible truths or who don't believe that bad things can happen. Under those circumstances, you can really miss out on supports that you need. I think it's important that you do express things like that, as many people don't really know what to say to people who are experiencing life threatening illnesses. Telling them what NOT to say or do is a good start. No matter what happens, I'll be rooting for you and supporting you from Canada.
Again, thank you for your honesty. Don't feel like you have to apologize for how you're feeling, or for expressing how you're feeling- you have the right to express how you feel, and it is very helpful for us to understand what you're really feeling.
Best wishes. ♥
What's most difficult for me is that I feel like cancer is just a revolving door. I started with scans, I had treatment, and now I'm back to scans again. I'm back to where I began. I will continue to have scans until it either comes back or enough time elapses which would mean I'm cured. To me that sounds very depressing as option one would be absolutely devastating, but option two is a very long time to finally feel like the dark cloud following me is finally gone. I'll be graduated from college, and working before I reach the 5 year mark.
DeleteI felt that I needed to apologize because I just finished, and this post while necessary kind of rained on the party that I know so many of those close to me are feeling. They just need to understand that I now feel more insecure than ever. My life is at the mercy of these scans, and I need their support now more than ever.
I think the best way to cope with the scans is just to take them one at a time. Don't think of all of the scans that your brother will have over the coming years. For me it's less overwhelming when I think of it this way.
Take Care.
Hi Michael,
ReplyDeleteI read your blog this morning. I continue to be impressed with your wisdom and strength beyond your years. We can all learn from you! I just wanted you to know that we pray and think about you all the time. Keep writing and educating people including myself, helping us keep life, family and friends in perspective. You are an inspiration to me!
- Pat Henry
Thank You
DeleteMike- Stay strong mentally and spiritually, keep fighting and never give up the battle. All you can do is take care of yourself by eating right, making sure you are getting enough rest, and keeping yourself in high spirits and happy by surrounding yourself with supportive and loving friends and family (and your blog readers). Most of all, never lose sight of all your dreams, Mike! I'm 23 and was also told that my rare soft tissue sarcoma was just lipoma until the third doctor I visited knew what I had was definitely not lipoma.. I know what you mean about the anxiety (I have my first check up scan coming up in a month since I've had my surgery in December). I also have the 10% chance of recurrence. I understand you about the revolving cycle, but you just have to take it for what it is and remember the most important thing is to stay positive right now and preoccupied. Anger and stress will just put you in misery so try to push the negativity out because stressing yourself isn't worth it...keep praying and keeping your spirits high. Good luck tomorrow, I will be keeping you in my prayers!
ReplyDelete-Glyka
Thanks Glyka! I'll keep you in my prayers.
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