~Tara
Sunday, May 31, 2015
So I thought I had my problem solved.
Well, I thought I had my "other problem" solved, but it's back. In full force. Pfffft. The good news is that I'm still on reduced seizure medication and I'm not having seizures. I see my neurologist and go in for my MRI on June 11, so I will talk to him about everything then and see what he says. And the following week on the 18th I meet with my Oncologist for my results. *fingers crossed* But my head is feeling alright, I think (or at least hope) that's a good sign. The attached meme is something I essentially live by. Even when I was at the Lodge I always knew there was someone worse off than I was and you have to put everything into perspective. I know I use this blog to update people of new changes and sometimes I use it just to let out my frustrations of what some times feels like a never ending struggle, but the good thing about having a struggle means that I'm alive.
~Tara
~Tara
Sunday, May 10, 2015
Test results in & experiment successful
**Disclaimer for the men and squeamish - Contains personal lady parts info. Again.**
Well, I saw my gynecologist for all the test results on May 6, and it appears I'm at a very interesting place right now. What to do for treatment. She pushed the Mirena as the first choice, and I laid out my reasons why I do not want to go that route which she was fine with, but she did print all of my test results for me and asked me to take them to my Drs and see what they say, whether I can do certain treatments or whether there is any truth to my suspicion of the Topiramate playing a role in all of this. She wants to perform a D&C to stop the bleeding now but insists that it will only be a temporary solution to what she deems a lifelong problem. Here is the very interesting part: my bloodwork is showing that my body is producing so little progesterone that it's almost producing none at all, this works both in my favour and against me. It is working in my favour for the fact that progesterone helps cancer cells divide and also will speed up the proliferation of the exact cells that make up my brain tumour, so not having it in my body could explain why my tumour is a slow growing one. However, the body needs progesterone in order to regulate a woman's menstrual cycle, and without it you will just continue to bleed, if you continue to bleed you can develop cervical cancer and other problems at any point.
So I'm faced with a pretty crappy situation. Take a hormone that could advance my current cancer but halt this newest problem, or forgo the hormone and continue to bleed, thereby possibly setting myself up for further problems. Not to mention my hemoglobin dropped 3 points in only 2 weeks. I see her again in August after I have my MRI and see my Oncologist, Neurologist and Endocrinologist and at that time after seeing what they all have to say and seeing where I am physically. I ordered the book, "The UNhysterectomy", to read about all of the options available to me for treating dysfunctional uterine bleeding because I have to think a lot of things through when picking a treatment option as I'm dealing with more than one issue here. I have a lot to consider and if one treatment will affect a different issue, I really need to seriously consider that. I have never wanted kids, I don't plan to have kids, so a hysterectomy wouldn't be an issue, but why undergo surgery if I don't have to?
And my hives. So, I broke out in hives on both my arms last week any time I went into the sun with nothing covering them. After seeing a Dr and embarking on my "experiment" I have ruled out environmental factors. I was out in all weather the past week, cloudy, sunny, hot, cool, humid, etc, and always wore my light jacket, even though I complained about having to wear it. lol But my hives did indeed clear up. I wasn't itchy, I could sleep at night, it was GLORIOUS! Then a few days ago I went out in humid weather with my jacket on and as I was waiting outside in some shade for my husband I decided I needed a breather, and hey, I was in the shade. Well, that was a mistake. The hives returned. I was standing in the shade a mere 5 minutes without my jacket on. So for the rest of the day, in the name of science, I decided to keep the jacket off and see if it was indeed the sun. It was a beautiful 25 degree and sunny day, 29 with humidex and the hives were back. The next day it was 32, and with a humidex of 36, very nice and summer like! I again ventured out without a jacket and the hives did not return, so it's one of 2 things: Either I'm starting to build up a tolerance now to sun exposure, or the fact that I've cut my seizure medication in half for the last 6 nights is finally kicking in because my bleeding patterns are changing, too. Odd? I think not. I really think it's that stupid medication.
Dr.T has GOT THIS all figured out. I think. lol Too bad I have to wait on the health care system to see my Drs and present my "findings" and see what they say. But yes, instead of taking 4 seizure pills in the morning and 4 at night I am only taking 4 in the morning, thereby cutting the dose in half. I did this only because my seizures have been controlled since my brain swelling has stopped, so I felt comfortable in doing so; also, it isn't like I was stopping my medication entirely. I also was quite certain it was the medication that was causing my problems and now I am absolutely certain that it is. In just 6 nights of half of the dosage, I can now go outside and not break out in hives. I also am not bleeding nearly as much as I was a week ago, so I'm hoping that within a month my system will regulate itself and I won't be at all. Just in time for me to see all of my Drs so I can say "this is what I've done and look at my results." :)
~TF
Well, I saw my gynecologist for all the test results on May 6, and it appears I'm at a very interesting place right now. What to do for treatment. She pushed the Mirena as the first choice, and I laid out my reasons why I do not want to go that route which she was fine with, but she did print all of my test results for me and asked me to take them to my Drs and see what they say, whether I can do certain treatments or whether there is any truth to my suspicion of the Topiramate playing a role in all of this. She wants to perform a D&C to stop the bleeding now but insists that it will only be a temporary solution to what she deems a lifelong problem. Here is the very interesting part: my bloodwork is showing that my body is producing so little progesterone that it's almost producing none at all, this works both in my favour and against me. It is working in my favour for the fact that progesterone helps cancer cells divide and also will speed up the proliferation of the exact cells that make up my brain tumour, so not having it in my body could explain why my tumour is a slow growing one. However, the body needs progesterone in order to regulate a woman's menstrual cycle, and without it you will just continue to bleed, if you continue to bleed you can develop cervical cancer and other problems at any point.
So I'm faced with a pretty crappy situation. Take a hormone that could advance my current cancer but halt this newest problem, or forgo the hormone and continue to bleed, thereby possibly setting myself up for further problems. Not to mention my hemoglobin dropped 3 points in only 2 weeks. I see her again in August after I have my MRI and see my Oncologist, Neurologist and Endocrinologist and at that time after seeing what they all have to say and seeing where I am physically. I ordered the book, "The UNhysterectomy", to read about all of the options available to me for treating dysfunctional uterine bleeding because I have to think a lot of things through when picking a treatment option as I'm dealing with more than one issue here. I have a lot to consider and if one treatment will affect a different issue, I really need to seriously consider that. I have never wanted kids, I don't plan to have kids, so a hysterectomy wouldn't be an issue, but why undergo surgery if I don't have to?
And my hives. So, I broke out in hives on both my arms last week any time I went into the sun with nothing covering them. After seeing a Dr and embarking on my "experiment" I have ruled out environmental factors. I was out in all weather the past week, cloudy, sunny, hot, cool, humid, etc, and always wore my light jacket, even though I complained about having to wear it. lol But my hives did indeed clear up. I wasn't itchy, I could sleep at night, it was GLORIOUS! Then a few days ago I went out in humid weather with my jacket on and as I was waiting outside in some shade for my husband I decided I needed a breather, and hey, I was in the shade. Well, that was a mistake. The hives returned. I was standing in the shade a mere 5 minutes without my jacket on. So for the rest of the day, in the name of science, I decided to keep the jacket off and see if it was indeed the sun. It was a beautiful 25 degree and sunny day, 29 with humidex and the hives were back. The next day it was 32, and with a humidex of 36, very nice and summer like! I again ventured out without a jacket and the hives did not return, so it's one of 2 things: Either I'm starting to build up a tolerance now to sun exposure, or the fact that I've cut my seizure medication in half for the last 6 nights is finally kicking in because my bleeding patterns are changing, too. Odd? I think not. I really think it's that stupid medication.
Dr.T has GOT THIS all figured out. I think. lol Too bad I have to wait on the health care system to see my Drs and present my "findings" and see what they say. But yes, instead of taking 4 seizure pills in the morning and 4 at night I am only taking 4 in the morning, thereby cutting the dose in half. I did this only because my seizures have been controlled since my brain swelling has stopped, so I felt comfortable in doing so; also, it isn't like I was stopping my medication entirely. I also was quite certain it was the medication that was causing my problems and now I am absolutely certain that it is. In just 6 nights of half of the dosage, I can now go outside and not break out in hives. I also am not bleeding nearly as much as I was a week ago, so I'm hoping that within a month my system will regulate itself and I won't be at all. Just in time for me to see all of my Drs so I can say "this is what I've done and look at my results." :)
~TF
Sunday, May 3, 2015
Because my life isn't complicated enough?
I started with a rash and hives about 4 days ago, about the time I started walking outdoors without a jacket on, and every time I went outside the hives seemed to get worse. They are just on my arms, though, it's really weird. It's painful, and all I want to do is scratch them, I think I need to wear mittens. lol I've been taking benadryl for the itching and using a cold compress to help relieve the pain, but I couldn't take it anymore and had to see a Dr today to see if I could hopefully get some additional relief and to see if I was going crazy. Well, moreso than normal.
I was told that I could be having a delayed reaction to the chemo/radiation. But I only did chemo for a week, I protested. It doesn't matter, he said, especially since I wasn't compatible to the chemo. Since I ended my treatment at a time of year that I was wearing jackets, and this week is my first time in the sun without one, I may simply be having a delayed reaction to photosensitivity, or a sun allergy.
Seriously? You have GOT to be kidding me. And how do we rule out environmental allergies, Dr? Well, he first wants me to suffer by spending time outside this week walking in this hot weather in long sleeves, so my skin is not exposed to the sun. If it is environmental, I will continue to break
out, if it is photosensitivity, it will clear up. In the meantime, I'll be suffering the heat while on 2 medications that make it difficult for me to sweat or tell when I'm dehydrated. If there was EVER a time to say F.M.L. The time is now.
~TF
P.S Here is a picture (albeit a bit shadowy and blurry) of the hives that are all over both of my arms right now. They don't go away regardless of how much benedryl I take. And the markings are much more red than the picture shows but it's hard to take a photo of your own arms. :)
I was told that I could be having a delayed reaction to the chemo/radiation. But I only did chemo for a week, I protested. It doesn't matter, he said, especially since I wasn't compatible to the chemo. Since I ended my treatment at a time of year that I was wearing jackets, and this week is my first time in the sun without one, I may simply be having a delayed reaction to photosensitivity, or a sun allergy.
Seriously? You have GOT to be kidding me. And how do we rule out environmental allergies, Dr? Well, he first wants me to suffer by spending time outside this week walking in this hot weather in long sleeves, so my skin is not exposed to the sun. If it is environmental, I will continue to break
out, if it is photosensitivity, it will clear up. In the meantime, I'll be suffering the heat while on 2 medications that make it difficult for me to sweat or tell when I'm dehydrated. If there was EVER a time to say F.M.L. The time is now.
~TF
P.S Here is a picture (albeit a bit shadowy and blurry) of the hives that are all over both of my arms right now. They don't go away regardless of how much benedryl I take. And the markings are much more red than the picture shows but it's hard to take a photo of your own arms. :)
Subscribe to:
Posts (Atom)