I titled this post as the gift that keeps on giving. The reason- chemo side effects still going strong. Do I consider chemo a gift since hopefully it will leave me cancer free for quite some time? It depends on the day.
I got glasses last week. I have been having terrible headaches in my eyes if that makes sense. It has gone on ever since I finished chemo. I refused to believe that chemo ruined my vision because it has ruined so much else. I also thought maybe my headaches were from not sleeping at night and I am sure that is part of my eye straining/pain problems. I decided at the end of April to go get my eyes checked and sure enough I have some vision loss. Most of my vision loss is farsightedness but I do have some slight nearsightedness too. So now I have glasses for work. Last Monday I was so sick to my stomach trying to get used to them. I only wore them for about 75% of the day. With each day since then I have been able to increase the amount of time I wear them. My headaches have for the most part subsided but my eyes still have that strange feeling that they have had for quite a long time. It is almost like they are dry and I have to blink a lot! It is weird and very hard to describe. I also got driving glasses but right now I haven't used them since most of my driving is during the day and I need my sunglasses. I mainly got them for night driving since I have been told that they will help to clear up some of my night blindness but I try and stay away from driving at night.
I am still not sleeping well. I got a Fitbit for Mother's Day and it tracks my sleep or in my case lack of sleep. It shows me just how terrible of sleep I get each night but I already knew that. I continue to be exhausted at the end of every day. The time of day I look most forward to is after dinner because that is when I go take a shower and lay down in my bed and most of the time that is at 7:00PM. That doesn't mean I fall asleep, but sometimes I do. Considering I am up about every 1-1/2 to 2 hours because of hot flashes and then I am awake from anywhere from 15 minutes to an hour after each one I can justify laying down at seven. After a hot flash you cannot just fall back asleep it jolts you wide awake. I fight sleep each and every night and sometimes I even have a little anxiety about going to bed because I want sleep so bad and I know that I will not get it. I remember back to when Kaci was a newborn and wanting sleep but knowing I wouldn't get it and wondering if it would ever end and it did end and I was able to get sleep again that is until cancer hit me!
I feel that my body has failed me in so many ways. There are so many things it cannot do anymore and I have pain each and every day but I always tell myself that this body is temporary and one day I will get that release just like each and every one of us will. I don't like thinking like that but it is honestly the only thing that gets me through each day. If I had to live like this forever and ever I could not be happy. I am happy because I am alive and get to spend time with my family and friends but some things are just so hard to do anymore. I love exercising but when I get going a debilitating hot flash will hit that knocks me down. I cannot stand and I cannot continue what I am doing. I have to sit down and wait for it to go away. These hot flashes during physical activity seem to last the longest and take quite a while to go away. I guess I need to be thankful that I can still get around on my own and that on the outside I look fairly normal to everybody else. If only they knew how I really felt inside.
One last thing and I would like to give credit to a new friend whose blog I follow super close and who has been through more in her lifetime than most people. Imagine having hip replacements in your 30's only to get diagnosed with breast cancer in your 40's and still have two young kids left to raise. Because of her I am going to take more time to myself. She has been deciding on a career change to help give her less stress and I have decided to cut back my hours at work to give me more time with my family and getting things done around home without being so exhausted all the time. I am excited to spend some extra time with Kaci this summer as I will have every Friday off and when she goes back to school I will get some precious time to myself that I so desperately need. I honestly feel like I run around like a mad woman most days and I cannot focus so good anymore so my brain is super foggy and I forget stupid things like turning off the bathroom faucet after washing my hands (yes that really happened) or losing my favorite pair of shoes and looking for them high and low until I was in tears and then having Jeff ask me if maybe they are upstairs near the treadmill and then remembering that I just wore them that morning when I was exercising as well as every morning for the last few weeks. Then I went and locked myself in the bathroom and cried until I couldn't cry anymore. Losing my memory has by far been the hardest part. I have such an obsessive compulsive personality and when I forget something or cannot find something I really freak out and now that these things are happening more frequently I cry a lot! I hate that I cannot remember things and I have an even harder time when Kaci gets mad at me because I cannot remember a conversation we had and then I cry and then she feels bad that she hurt my feelings. It is a never ending cycle. She is stuck with her "new" mom as my life will never be the same.
I don't want this to sound like a downer post but this is what I go through on a daily basis. I am looking forward to summer and sunshine which is always good for my soul. We are getting our trailers and ATV's all ready for a lot of camping trips. Jeff only has one class this summer and it looks to be pretty low key so that we can enjoy a lot of family time. School is on May 26th for Kaci and she and my mom have some fun plans on Tuesday and Wednesday's since my mom doesn't work on those days. She is also hoping that she can hang out with Jeff's mom this summer too and best of all she gets me and I get her all to ourselves on Friday's!!!
Wednesday, May 25, 2016
Friday, May 6, 2016
Breakup with a doctor
So back in December I posted about another great doctor on my team. One that is into practicing holistic medicine. I do need to start by saying that yes, she has gotten my cholesterol under control holistically (Red Yeast Rice) and I am very grateful for that. She has also introduced me to COQ10 as well as diagnosing the MTHFR gene so now I am taking a methyl form of B vitamins which should help my liver process out toxins better.
This week I had another appointment with her and we were discussing my overall health and when I told her that I am not sleeping at night she asked me why. As if we haven't discussed me being in permanent menopause at age 41 and the hot flashes that occur almost hourly each and every day. In fact back in December she tried to prescribe me Zoloft until I told her I couldn't take that drug because if its interaction with Tamoxifen. I said to myself "whatever" and re-discussed menopause with her. She told me to try Xanax and I had to tell her that there are only 4 medicines out there that I can even try and take with being ER/PR positive and I am pretty sure Xanax was not one of them. She pulled out her phone to research to see if Xanax is safe and she told me it doesn't react with Tamoxifen. I told her that I have a prescription for Effexor and she told me not to even try it, that it is not good for hot flashes. Now I have researched everything about breast cancer and I mean everything and a lot of people find success with Effexor. I just haven't had time to give it a try because of how tired it made me that one day that I tried it. I am waiting for the perfect time to try it and I want to start it on a Friday night when I know that I can sleep in on the weekend and so far I haven't had a chance but I will try it eventually!
Then she told me to try Estrovera for hot flashes which is a supplement that has been known to help hot flashes after 12 weeks. Just the name of it scares me, it sounds too much like estrogen and that is a very scary word for someone like me. I asked her if it is safe and she said of course it is safe and it doesn't react with Tamoxifen. I have been told by my oncologist to stay away from any type of supplement that can mimic estrogen and when I told her that she acted like she didn't even hear me and ended up writing it down on the papers she gave me anyway. I asked her if I should still take my Gabapentin along with it and she said yes, that the Gabapentin is for the bone pain. What? I have bone pain that I didn't know I had. I told her I take Gabapentin for hot flashes and she was floored that I would take that for hot flashes. However, she should already have notes about this since I started Gabapentin last December and discussed this very drug with her and the reason that I was using it.
Next, I asked her about appetite suppressant to maybe help me lose some weight since it has been over a year and I cannot lose any. I haven't gained any since March of last year but I haven't lost any either. No matter how hard I try my weight won't budge and it is getting very frustrating. She told me that since I am not sleeping at night as it is so she won't prescribe nor recommend taking any sort of appetite suppressant since they will keep me up all night which is probably true due to the added caffeine in most of them. She said the best way to lose weight is to eliminate all carbohydrates from my diet. I tried that back in December for a one week and there is no way I can do that type of a diet long term nor do I believe it is safe to do long term. She told me that is the only way and that all wheat has Roundup on it and that is what we are eating when we eat wheat. She had only terrible things to say about any type of grain. I told her that the dietician I saw in January recommends eating from all the food groups but to try and get more of the whole grains rather than the "white" grains and that I have for the most part completely switched to whole grains. She went on and on again about how bad they are for you. I guess everybody has an opinion and what works for one doesn't work for another and I get that. I just felt like she wasn't listening to me no matter what I said.
After all of this I was done and just shut down and wanted to get out of there. She wanted to do a pelvic ultrasound since it has been 6 months and I lied and told her that I will be having those done at the radiology department instead. In reality I will only do them if my oncologist feels it is necessary since Tamoxifen can cause uterine cancer and if he feels I need one then yes, I will do it at the radiology clinic (this was the suggestion by my surgeon back in January only because she isn't a radiologist and doesn't know everything to look for). I was in complete disbelief that she was so nice and caring back in December and also in February but this time she was asking me all sorts of things that she should already have notes about. I feel now like she doesn't know me nor does she have any regard to my health and well being.
When I was leaving she handed me the prescription for Xanax and because I felt like our whole conversation this time was an argument I just took it and left. Of course I will never fill it! I came back to work after this appointment crying and feeling more frustrated than ever. I wish so bad that I can get over how I look and not worry about my weight, but I do. I am only 41 freaking years old and I have the weight gain that most women get in their later 50's and 60's when they reach permanent menopause. Let alone I walk like an old lady because of the arthritis in my legs. I am having a really hard time right now. Jeff made me feel better when he told me that he loves me no matter what I look like and he told me that he disagrees with everything that I told him about this doctors appointment. After that I chose to leave all of this behind me and not look back (with the exception of typing out this blog post, ha, ha).
I guess it is safe to say that I am officially breaking up with this doctor who by the way really isn't a doctor, she is a nurse midwife!!!!!
This week I had another appointment with her and we were discussing my overall health and when I told her that I am not sleeping at night she asked me why. As if we haven't discussed me being in permanent menopause at age 41 and the hot flashes that occur almost hourly each and every day. In fact back in December she tried to prescribe me Zoloft until I told her I couldn't take that drug because if its interaction with Tamoxifen. I said to myself "whatever" and re-discussed menopause with her. She told me to try Xanax and I had to tell her that there are only 4 medicines out there that I can even try and take with being ER/PR positive and I am pretty sure Xanax was not one of them. She pulled out her phone to research to see if Xanax is safe and she told me it doesn't react with Tamoxifen. I told her that I have a prescription for Effexor and she told me not to even try it, that it is not good for hot flashes. Now I have researched everything about breast cancer and I mean everything and a lot of people find success with Effexor. I just haven't had time to give it a try because of how tired it made me that one day that I tried it. I am waiting for the perfect time to try it and I want to start it on a Friday night when I know that I can sleep in on the weekend and so far I haven't had a chance but I will try it eventually!
Then she told me to try Estrovera for hot flashes which is a supplement that has been known to help hot flashes after 12 weeks. Just the name of it scares me, it sounds too much like estrogen and that is a very scary word for someone like me. I asked her if it is safe and she said of course it is safe and it doesn't react with Tamoxifen. I have been told by my oncologist to stay away from any type of supplement that can mimic estrogen and when I told her that she acted like she didn't even hear me and ended up writing it down on the papers she gave me anyway. I asked her if I should still take my Gabapentin along with it and she said yes, that the Gabapentin is for the bone pain. What? I have bone pain that I didn't know I had. I told her I take Gabapentin for hot flashes and she was floored that I would take that for hot flashes. However, she should already have notes about this since I started Gabapentin last December and discussed this very drug with her and the reason that I was using it.
Next, I asked her about appetite suppressant to maybe help me lose some weight since it has been over a year and I cannot lose any. I haven't gained any since March of last year but I haven't lost any either. No matter how hard I try my weight won't budge and it is getting very frustrating. She told me that since I am not sleeping at night as it is so she won't prescribe nor recommend taking any sort of appetite suppressant since they will keep me up all night which is probably true due to the added caffeine in most of them. She said the best way to lose weight is to eliminate all carbohydrates from my diet. I tried that back in December for a one week and there is no way I can do that type of a diet long term nor do I believe it is safe to do long term. She told me that is the only way and that all wheat has Roundup on it and that is what we are eating when we eat wheat. She had only terrible things to say about any type of grain. I told her that the dietician I saw in January recommends eating from all the food groups but to try and get more of the whole grains rather than the "white" grains and that I have for the most part completely switched to whole grains. She went on and on again about how bad they are for you. I guess everybody has an opinion and what works for one doesn't work for another and I get that. I just felt like she wasn't listening to me no matter what I said.
After all of this I was done and just shut down and wanted to get out of there. She wanted to do a pelvic ultrasound since it has been 6 months and I lied and told her that I will be having those done at the radiology department instead. In reality I will only do them if my oncologist feels it is necessary since Tamoxifen can cause uterine cancer and if he feels I need one then yes, I will do it at the radiology clinic (this was the suggestion by my surgeon back in January only because she isn't a radiologist and doesn't know everything to look for). I was in complete disbelief that she was so nice and caring back in December and also in February but this time she was asking me all sorts of things that she should already have notes about. I feel now like she doesn't know me nor does she have any regard to my health and well being.
When I was leaving she handed me the prescription for Xanax and because I felt like our whole conversation this time was an argument I just took it and left. Of course I will never fill it! I came back to work after this appointment crying and feeling more frustrated than ever. I wish so bad that I can get over how I look and not worry about my weight, but I do. I am only 41 freaking years old and I have the weight gain that most women get in their later 50's and 60's when they reach permanent menopause. Let alone I walk like an old lady because of the arthritis in my legs. I am having a really hard time right now. Jeff made me feel better when he told me that he loves me no matter what I look like and he told me that he disagrees with everything that I told him about this doctors appointment. After that I chose to leave all of this behind me and not look back (with the exception of typing out this blog post, ha, ha).
I guess it is safe to say that I am officially breaking up with this doctor who by the way really isn't a doctor, she is a nurse midwife!!!!!
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