The wait continues...
So my radiation and chemo start dates keeping getting pushed back and it has been interfering with plans of getting it started and over with!!! Well what can you do right?!?! I was supposed to start Monday then it was changed to today then the radiation receptionist called yesterday and said it had been postponed again until next Monday (Oct 26) but she didn't know why because "she is just the receptionist". He did want to see me today though. I was a little bit nervous for two reasons. One: I knew they did blood tests to check my kidneys and liver and I knew my kidneys were fine but hadn't heard back on my liver. Surely 3 years of wine drinking didn't destroy my liver right? Second: Every time I have an appointment with a specialist no matter how it goes I feel really crappy and am a write off for almost 2 full days after. I suppose my mind just goes around in circles and I get really down and turn into a hopeless lazy mess.
Luckily both fear 1 and 2 were canceled out by the end of my appointment today and on top of that I got some answers as to why they continue to postpone this very critical treatment.
Its bad but not as bad as having a shot liver at 27 (or finding out you have stage 4 brain cancer)! Basically the problem is that the space in my brain that needs to be radiated drapes down below my right eye therefore making the path of one of the radiation lasers go through my eye. The physicists are trying to work out the angles so they can get the empty spot in my head with the least amount of damage to my eye. This (the laser through the eye) will potentially cause crucial damage to my eye in terms of blindness if they can not adjust my treatment plan to lower the rate of risk. This is why my radiation Doctor would like my treatment plan revised until they can get it right. I would prefer to have the lowest percentage of risk possible! Unfortunately he did say that I will get cataracts from my treatment (which is covered by BC Medical to be removed in the future) and he said I would develop glaucoma within a couple years also. My side effects during the treatment time in regards to my eye will be red and itchy as he says they will not be able to avoid having the laser go through the back of my eye.
As you can imagine there are tons of various side effects I will potentially get throughout the next 6 weeks of treatment. The biggies are fatigue and nausea which are symptoms of both radiation and chemo. The radiation will also leave my skin (in the area of the treatment) discolored like a sunburn or tan - in my case I am certain it will sun burn. I may have balance problems and he said I would experience problems with things like math... I am not upset over this seeing as I have never been good at math even a little bit! The biggest concerns with the chemo is my WBC (white blood cell count). My immune system will be down at this time and it is best for me to NOT get sick or injure myself. I did ask about whether I could go ahead and get my gray ribbon tattoo and he said it would be best to wait simply because I will be more prone to infection at this time. Also there is a new vaccine coming out in the next week I believe to prevent the H1N1 virus. They have recommended I go to my family physician for this shot because a virus like this could kill me and as you know... it is going around.
I think that is all that went on today. I have been given next Monday now as my start date however I have not received a time. Dr. Hsu said it could be pushed back again but if I don't hear from their office on Friday, call him on Monday to get an update. I hope to hear from them because although I am not looking forward to this awful experience... its time I feel like we are doing something about it.
Oh I remember... I do have more to say (Ha don't even pretend you were surprised!) He also told me that I will loose my hair in the area of my treatment and in
addition to that I will loose hair where the laser exits my head which will be the back of my head on the left hand side. So my plan of shaving my head has been finalized and will be taking place this Sunday night. I am terrified but also feel as though I am taking a stand against this disease and taking control of one of the few things I have control over. Soooo.... I got my first wig today at the wig room in Abbotsford Cancer Center! It was free and it is short. It was the only wig in the room that wasn't permed and gray. The funny part about that is even if many of the cancer patients are women over 40 - what makes anyone think that they want GRAY hair by choice ha ha! Seems very backwards to me. I would like to have a wig that is long hair either brown or reddish so I may do a little looking around.
I made tacos for dinner and watched the hockey game (we beat Chicago) and we had J's grandparents over for a visit. Ok I think that is all for now for real. Love ya all!
~*~PEACE OUT~*~
Luckily both fear 1 and 2 were canceled out by the end of my appointment today and on top of that I got some answers as to why they continue to postpone this very critical treatment.
Its bad but not as bad as having a shot liver at 27 (or finding out you have stage 4 brain cancer)! Basically the problem is that the space in my brain that needs to be radiated drapes down below my right eye therefore making the path of one of the radiation lasers go through my eye. The physicists are trying to work out the angles so they can get the empty spot in my head with the least amount of damage to my eye. This (the laser through the eye) will potentially cause crucial damage to my eye in terms of blindness if they can not adjust my treatment plan to lower the rate of risk. This is why my radiation Doctor would like my treatment plan revised until they can get it right. I would prefer to have the lowest percentage of risk possible! Unfortunately he did say that I will get cataracts from my treatment (which is covered by BC Medical to be removed in the future) and he said I would develop glaucoma within a couple years also. My side effects during the treatment time in regards to my eye will be red and itchy as he says they will not be able to avoid having the laser go through the back of my eye.
As you can imagine there are tons of various side effects I will potentially get throughout the next 6 weeks of treatment. The biggies are fatigue and nausea which are symptoms of both radiation and chemo. The radiation will also leave my skin (in the area of the treatment) discolored like a sunburn or tan - in my case I am certain it will sun burn. I may have balance problems and he said I would experience problems with things like math... I am not upset over this seeing as I have never been good at math even a little bit! The biggest concerns with the chemo is my WBC (white blood cell count). My immune system will be down at this time and it is best for me to NOT get sick or injure myself. I did ask about whether I could go ahead and get my gray ribbon tattoo and he said it would be best to wait simply because I will be more prone to infection at this time. Also there is a new vaccine coming out in the next week I believe to prevent the H1N1 virus. They have recommended I go to my family physician for this shot because a virus like this could kill me and as you know... it is going around.
I think that is all that went on today. I have been given next Monday now as my start date however I have not received a time. Dr. Hsu said it could be pushed back again but if I don't hear from their office on Friday, call him on Monday to get an update. I hope to hear from them because although I am not looking forward to this awful experience... its time I feel like we are doing something about it.
Oh I remember... I do have more to say (Ha don't even pretend you were surprised!) He also told me that I will loose my hair in the area of my treatment and in
addition to that I will loose hair where the laser exits my head which will be the back of my head on the left hand side. So my plan of shaving my head has been finalized and will be taking place this Sunday night. I am terrified but also feel as though I am taking a stand against this disease and taking control of one of the few things I have control over. Soooo.... I got my first wig today at the wig room in Abbotsford Cancer Center! It was free and it is short. It was the only wig in the room that wasn't permed and gray. The funny part about that is even if many of the cancer patients are women over 40 - what makes anyone think that they want GRAY hair by choice ha ha! Seems very backwards to me. I would like to have a wig that is long hair either brown or reddish so I may do a little looking around. I made tacos for dinner and watched the hockey game (we beat Chicago) and we had J's grandparents over for a visit. Ok I think that is all for now for real. Love ya all!
~*~PEACE OUT~*~
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