I have never been into gambling or playing the lottery. The odds are so slim and I felt that money was just being thrown away. Right now though, I am thinking I should start playing the lottery with the way my life has been going during my cancer diagnosis.

Prior to starting my treatment, I meet with my doctors and they went through the “possible” side effects. When the doctors go through these side effects, they often tell me “we have to just let you know about these potential side effects, but the chances of them happening are not likely.” In the back of my mind, those words mean nothing because I feel I am the outlier in all of this medical data. Someone has to be! I often laugh and tell the doctors they have to tell patients these possible side effects because of patients like me. Doctors shrug me off, until it actually happens!

So here I am, with these potential chemo side effects, already happening. The biggest life altering side effect from the chemo was that the drug could effect my hearing and after one chemo infusion, it happened! I know right, just laugh about it is all I can do. Go figure! As I was feeling like complete death after the chemo infusion I began getting ringing in my ears. Not constantly, but it was happening more frequently than not. When my ears weren’t ringing, my ears sounded very muffled, which I can only compare that sound and feeling like being under water. So with these changes, I knew it wasn’t good and I informed my doctor right away. I was then set up for another hearing test, which don’t you know confirmed I have changes in my hearing! Of course I do after only one chemo treatment. I now have a mild hearing loss in my left ear and a moderate hearing loss in my right ear, which is permanent damage. At this point, they can’t even tell me if this will be the extent of the damage because it can continue to get worse over time, even when I am finished my treatments. The ringing and muffled sound in my ears will not go away. I was told that some people over time learn to process those noises and put them in the back of their brain, but other people can not so there are assistive devices to help with that. I know right this isn’t the end of the world, but I also don’t know what is going to happen moving forward. Is my hearing going to continue changing from that one chemo dose? Are the doctors going to keep me on this strong chemo every three weeks? Will the chemo be changed to weekly doses? Will the doctors change the chemo drugs completely because of the hearing loss? These are all questions I do not have answers to until I meet with the doctors next week. I do understand the BIG picture is to get rid of the cancer, but honestly losing 60% of my vocal cords the last time, which has completely altered my voice, and now losing a portion of my hearing is just complete insanity!

On top of all of this, the Proton machines for radiation have still been down. This is the longest period of time the machines have EVER been down. See once again, my luck. I was literally on the table when the machine went down. There has been teams of people from all over the world working around the clock and it is still not working. They are “hopeful” the machines will be up and running next week….but I am holding my breath on that too. (Because I have heard that multiple times the past two weeks).

So literally I have no idea what is going on right now with my treatment. I don’t know times for my radiation appointments in advance because the hospital is taking it day by day and I do not know what machine I am going to be on. That makes planning rather difficult for logistics on who is taking care of the kids and who is going with me to treatment, but thank goodness I have an amazing support group who understands my frustrations. Now, with the hearing loss I also have no idea what that means for my future chemo appointments. This all drives me crazy as I am such a planner, but I am trying to take everything in stride one day at a time.

After finding out about the hearing loss, Rob asks me “is there a side effect you don’t get?” Honestly the only thing I can do is laugh about it because crying is negative energy that I definitely don’t need. But just maybe with the way my luck is going I should go buy some lottery tickets since I am continuing to beat all odds with potential side effects.