My post below is titled I am not in menopause any longer, however what I have been in has been "chemopause" and it can take a couple of years or more for your ovaries to "wake up". Well mine have awaken. It could be a blessing or a curse. I am going to consider it a blessing. I still feel sooooo good. While I am not having the severe sweaty hot flashes any more I still get warm flushes and I have had a few of them this week that have been worse than the past two weeks but they are so easy to get through compared to what I used to have while I was taking Tamoxifen.
Today marks 2 years since I started chemo and 2 years since my cycle shut down (I was actually on my period when I started chemo and two days later it abruptly stopped and has never come back). I still have not started my period and we don't know for sure when my ovaries "woke up" because most women don't have a period on Tamoxifen anyway. Here are the exact results of my hormone test from July 28th and then again on November 28th. My estradiol level back at the end of July was 6.3 and FSH was 48 (clearly post-menopausal) and my estradiol level on November 28th was 359.7 and FSH is 19 (clearly pre-menopausal). I have been so scared since I found this out on December 2nd thinking that my hormones are running wild through my body. I am still taking a drug holiday from Tamoxifen and enjoying every minute of it. I have been researching the benefits and risks steady with every spare moment I have.
Today I had my much anticipated appointment with Dr. C down at The Huntsman Cancer Institute in SLC, Utah. I have decided that I wanted to talk to another oncologist about my care going forward. He actually specializes in breast oncology, I had no idea such a doctor existed. I just thought that an oncologist was an oncologist and that there was not a specialty within the field. I also decided to move my care down there just in case my cancer ever comes back. I have always said that if it comes back I am going to Huntsman. I figured now was a good time as any to get established. I would rather be established now where I only have to go to my check ups a few times a year anyway. Huntsman is about an hour and twenty minutes from my house. My appointment was about two hours long. I had to answer a ton of questions and then his physician assistant came in and spent the first hour with me. She had me tell my story and asked about my hobbies and family. It was really nice. Then she did an exam of my chest wall and lymph nodes in my arms. Then Dr. C came in and sat down to chat. We talked mostly about my frustrations with hormone therapy. I wanted to know my benefit vs. risk of taking the drug. He punched in some numbers regarding me and my cancer and I found that my benefit really isn't that high. The way I have been made to feel is that those drugs are almost a life and death decision and today I feel totally differently about it. He said while there is a benefit for me it only about a 5% benefit over 10 years. Honestly that number isn't that high for me to go back to feeling so crappy each and every day, of course I could be one of those 5 women who pass away from breast cancer because I didn't take the hormone therapy drugs. For now I am going to continue my drug holiday and it will probably be an extended drug holiday but I do know I will never go back on Tamoxifen, there were too many side effects for me and some more series than others. I asked about taking 10mg of Tamoxifen instead and he said the same thing as my other doctors and that is 10mg has not been studied. He said he has one patient who takes 10mg because she cannot handle the side effects for 20mg however he cannot say if she is benefiting from it or not but it is something she chooses to do. While I wanted to consider this lower dose I really don't want any side effects from it especially if it isn't doing any good at the lower dose anyway. I also asked him if I received any benefit from Tamoxifen since I only took it for a year and 5 months and he said absolutely. He said there is a benefit to any amount however they would like you on it for 5 to 10 years.
In the future I might decide to try the ovary suppression injections and see how I handle them and then possibly try one of the aromatase inhibitor drugs. I was so hoping my hormone levels would have still showed post menopausal so I could just try these drugs without having to suppress my ovaries. I do want to at least try it sometime down the road because if my cancer every comes back I want to know that I tried everything available to me. I know if I don't like it then I can just chose not to do it and the injection that puts you into menopause wears off after a month anyway so I really have nothing to lose but right now I am not sure I even want to do that. I will continue to think about it and if/when I am ready to give it a try he said to call and make an appointment, otherwise he told me that he wants to see me every three months for now and all we will do is an exam and talk about how I feel (I made my next appointment but pushed it out 4 months, just to give me some more time). He said he won't be doing any blood work because that really isn't any indication of the cancer coming back or not. He also said no to pet scans just like my previous doctors. He said if it comes back it doesn't matter when you find it, it is incurable either way and the survival rates are the same. Also with my type of breast cancer being lobular it is very hard to find on imaging anyway unless it is very large. That is the reason all the imagining I initially had didn't show it in my lymph node but it was there and it was quite large at 1cm. With lobular it grows in a single row of cells and branches out in a web like pattern. It is very hard to detect and when most women find it, it is usually quite large. I am okay with not having any pet scans because I can only imagine the anxiety they would give me. He said my kind of cancer usually spreads to the stomach and not the usual, brain, bones or liver like ductal breast cancer does. He said if I have any unexplained pain that doesn't go away after two weeks then call him and he will check it out. It was nice getting this second opinion because everything was reiterated and exactly the same as my other oncologist who I really like. The only difference with this appointment is that he could help me get some statistics about my benefit of the hormone therapy drugs that my other doctors could not.
The University of Utah ordered all of my tumor slides from Ogden prior to my appointment and conducted their own pathology test and they have decided to down grade my stage to a IIB instead of a IIIA. While this wouldn't have changed the course of my treatment in any way it sure helps me mentally to know that I am a stage II and not a stage III. He said he doesn't feel the other pathologist did anything wrong, however he said he trusts his pathologists more and they chose to look at my tumor differently. He explained it and while I cannot explain it with words, he actually drew on paper how they came to that conclusion. Either way it doesn't matter but it does make me feel better.
Overall I am happy to be at one of the best hospitals in the country and look forward to continuing my care with them. Another easy decision for me to change doctors is that my current oncologist is no longer on my insurance. I am not sure how that works if I wanted to stay with them. I can't imagine really liking your doctor and not just any doctor but your medical oncologist only to not be able to go to them anymore. I think the timing of all of this is a sign for me that I have made the right choices going forward.
For now I am going to go and live my life and not let the decision that may or may not lie ahead consume my time of feeling so good like it has the past 4 weeks since I quite Tamoxifen.
Friday, December 16, 2016
Sunday, December 4, 2016
"I AM NOT IN CHEMOPAUSE ANY LONGER"
I can hardly believe it, my hormone test I had last Monday on November 28th shows that I am no longer menopausal. My doctor called me last Friday, December 2nd with the results. I do not know how I feel about this. I know they kept telling me that this could happen but I didn't believe them because of how bad my menopausal side effects were. Now I know why on my "Tamoxifen holiday" my hot flashes are gone and have been replaced by a little tiny warm flush that most of the time I don't even notice.
I had this same test at the end of July which still showed menopause and now it doesn't. The levels have climbed so high in the last 4 months. While this would be good news for any other woman dealing with cancer to come out of "chemopause" after almost 2 years (it was 2 years ago on December 15th that my cycle shut down), for me this is not good news at all. Because my tumor was 100% percent estrogen receptor positive (meaning it used the estrogen in my body to grow) the doctors are telling me that we have to eliminate/ reduce the estrogen in my body. This is also bad news because when they called me with the results on Friday she said the only option for me is to go back on Tamoxifen. I started crying, I do not want to go back on that drug. Even with my ovaries "waking up" and my hormone levels returning to normal over the course of the last 4 months my hot flashes not once subsided nor did any of the other bothersome side effects. Of course there are other options for me to shut down my ovaries temporarily and also permanently to eliminate the amount of estrogen and also to be able to take an armomatase inhibitor blocker.
I was so hoping my levels would still show menopause and in fact I knew they would so when she gave me this news, I was completely shocked. I know now that my hot flashes were being kept so strong from the Tamoxifen. I was hoping by being on a drug holiday it meant that my body has transitioned itself and had gotten used to menopause and that naturally my hot flashes have subsided. Now I know the reason for not having hot flashes and it scares me so bad. It scares me for many different reasons. Estrogen running full force through my body can make my cancer come back but on the other hand I feel like a normal person again. I know that no matter which way I chose to go from here I will have to go through the miserable hot flashes yet again because I would never dare take any kind of estrogen therapy like most menopausal women can take to help ease the symptoms.
I get to continue my drug holiday through the end of December. I see my new doctor at Huntsman on the 15th. I am so anxious for this appointment. I am hoping he can help me by giving me some statistics should I never go back on these blockers. For some reason they cannot give me any information at my current oncologists office as to a percentage of benefit for taking the blockers. In a way I don't know if it even matters. The more time that passes by feeling absolutely great, the more I am thinking of doing nothing as far as taking any more medications. I still want the 2nd opinion however before I make my final decision. I can't believe how much my life has turned around just from stopping this drug and of course my hormone levels coming back have the majority to do with how good I feel. I am 100% completely myself again after 2 freaking years!!! The only side effect that I feel lingering from chemo now is just the arthritis in my ankles. It started the May after I finished chemo in 2015 but everything else is gone, completely gone! I never in a million years ever expected to feel this great again. I have been praying for so long to get some relief and now here it is in front of me. Do I take this as an answer to my prayers? Do I stay off of these drugs that were making me feel so lousy? Am I sealing my fate as to how I am going to die? There are so many questions but I have to believe and I do believe that God is in control and I will die when and how I am supposed to no matter my decision. I did do everything that was suggested to me when I was diagnosed, I chose to do a bilateral mastectomy so I didn't have to worry about cancer in the other breast, I completed 4 A/C cycles, 4 dose dense Taxol cycles and I can't even remember how many weeks of radiation. Each of those was so very hard and there were many times when I almost quit chemo, I honestly don't know how I pushed through it. Radiation was very hard too and I almost cut that short too but I didn't. I have completed almost a year and a half of Tamoxifen which I suppose it better than nothing at all.
Nothing is ever easy for me through this cancer journey, there is always something that comes up to make it 10 times harder and here I am yet again. I need to go to the store and stock up on feminine hygiene products since I threw them all out over a year ago, just in case my period comes back. In fact my doctor said it will more than likely come back and I need to be prepared and keep something with me just in case. I can't believe I will probably get my period again and I am still in absolute shock that my ovaries have woken up especially since last December when I had a pelvic ultrasound she couldn't even find my one ovary, it had shriveled so much.
I have a lot of decisions to make in the next while. I may chose to try the injections to shut down my ovaries temporarily (it shuts them down for about 3 months at a time) and see how I feel and then possibly try one of the A/I blockers. If it isn't too bad then I will do another 3 months and try up to all 3 of the drugs to see if I can tolerate one better than another. I do know that if they make me feel anything like the Tamoxifen that I won't do it because my quality of life is so much more important than my quantity of life. I want to be able to enjoy my life and feel good and at least participate in things that I have been having to sit out for so long. If I can tolerate the A/I blockers along with the ovary suppression then I may decide to just get my ovaries taken out permanently and not have to worry about it.
For now I am enjoying each day and night. It is amazing how good sleep can make you feel and act. I feel like I am no longer on edge most of the day. I am so happy and cheerful because I know these days won't last forever and while I am in them I must make the best of them and not take them for granted. I love that I am at a comfortable temperature now. I am not tossing clothes back and forth every few minutes which drove me crazy. Of course I still get cold and hot but like a normal person now. I can think again with a 100% clear mind, or at least it feels like 100% compared to how I have been thinking the last two years. I don't even know if I felt this normal before cancer treatments. It has been so long.
Again I ask myself, is this the answer to my prayers??? I would like to think that it is. I will continue to pray for clarity as these decisions are all in front of me as to what to do. It is so hard to think about going back to my LIVING HELL just to get more years here on this earth.
I had this same test at the end of July which still showed menopause and now it doesn't. The levels have climbed so high in the last 4 months. While this would be good news for any other woman dealing with cancer to come out of "chemopause" after almost 2 years (it was 2 years ago on December 15th that my cycle shut down), for me this is not good news at all. Because my tumor was 100% percent estrogen receptor positive (meaning it used the estrogen in my body to grow) the doctors are telling me that we have to eliminate/ reduce the estrogen in my body. This is also bad news because when they called me with the results on Friday she said the only option for me is to go back on Tamoxifen. I started crying, I do not want to go back on that drug. Even with my ovaries "waking up" and my hormone levels returning to normal over the course of the last 4 months my hot flashes not once subsided nor did any of the other bothersome side effects. Of course there are other options for me to shut down my ovaries temporarily and also permanently to eliminate the amount of estrogen and also to be able to take an armomatase inhibitor blocker.
I was so hoping my levels would still show menopause and in fact I knew they would so when she gave me this news, I was completely shocked. I know now that my hot flashes were being kept so strong from the Tamoxifen. I was hoping by being on a drug holiday it meant that my body has transitioned itself and had gotten used to menopause and that naturally my hot flashes have subsided. Now I know the reason for not having hot flashes and it scares me so bad. It scares me for many different reasons. Estrogen running full force through my body can make my cancer come back but on the other hand I feel like a normal person again. I know that no matter which way I chose to go from here I will have to go through the miserable hot flashes yet again because I would never dare take any kind of estrogen therapy like most menopausal women can take to help ease the symptoms.
I get to continue my drug holiday through the end of December. I see my new doctor at Huntsman on the 15th. I am so anxious for this appointment. I am hoping he can help me by giving me some statistics should I never go back on these blockers. For some reason they cannot give me any information at my current oncologists office as to a percentage of benefit for taking the blockers. In a way I don't know if it even matters. The more time that passes by feeling absolutely great, the more I am thinking of doing nothing as far as taking any more medications. I still want the 2nd opinion however before I make my final decision. I can't believe how much my life has turned around just from stopping this drug and of course my hormone levels coming back have the majority to do with how good I feel. I am 100% completely myself again after 2 freaking years!!! The only side effect that I feel lingering from chemo now is just the arthritis in my ankles. It started the May after I finished chemo in 2015 but everything else is gone, completely gone! I never in a million years ever expected to feel this great again. I have been praying for so long to get some relief and now here it is in front of me. Do I take this as an answer to my prayers? Do I stay off of these drugs that were making me feel so lousy? Am I sealing my fate as to how I am going to die? There are so many questions but I have to believe and I do believe that God is in control and I will die when and how I am supposed to no matter my decision. I did do everything that was suggested to me when I was diagnosed, I chose to do a bilateral mastectomy so I didn't have to worry about cancer in the other breast, I completed 4 A/C cycles, 4 dose dense Taxol cycles and I can't even remember how many weeks of radiation. Each of those was so very hard and there were many times when I almost quit chemo, I honestly don't know how I pushed through it. Radiation was very hard too and I almost cut that short too but I didn't. I have completed almost a year and a half of Tamoxifen which I suppose it better than nothing at all.
Nothing is ever easy for me through this cancer journey, there is always something that comes up to make it 10 times harder and here I am yet again. I need to go to the store and stock up on feminine hygiene products since I threw them all out over a year ago, just in case my period comes back. In fact my doctor said it will more than likely come back and I need to be prepared and keep something with me just in case. I can't believe I will probably get my period again and I am still in absolute shock that my ovaries have woken up especially since last December when I had a pelvic ultrasound she couldn't even find my one ovary, it had shriveled so much.
I have a lot of decisions to make in the next while. I may chose to try the injections to shut down my ovaries temporarily (it shuts them down for about 3 months at a time) and see how I feel and then possibly try one of the A/I blockers. If it isn't too bad then I will do another 3 months and try up to all 3 of the drugs to see if I can tolerate one better than another. I do know that if they make me feel anything like the Tamoxifen that I won't do it because my quality of life is so much more important than my quantity of life. I want to be able to enjoy my life and feel good and at least participate in things that I have been having to sit out for so long. If I can tolerate the A/I blockers along with the ovary suppression then I may decide to just get my ovaries taken out permanently and not have to worry about it.
For now I am enjoying each day and night. It is amazing how good sleep can make you feel and act. I feel like I am no longer on edge most of the day. I am so happy and cheerful because I know these days won't last forever and while I am in them I must make the best of them and not take them for granted. I love that I am at a comfortable temperature now. I am not tossing clothes back and forth every few minutes which drove me crazy. Of course I still get cold and hot but like a normal person now. I can think again with a 100% clear mind, or at least it feels like 100% compared to how I have been thinking the last two years. I don't even know if I felt this normal before cancer treatments. It has been so long.
Again I ask myself, is this the answer to my prayers??? I would like to think that it is. I will continue to pray for clarity as these decisions are all in front of me as to what to do. It is so hard to think about going back to my LIVING HELL just to get more years here on this earth.
Wednesday, November 30, 2016
Tamoxifen Holiday and another 4 month check up
I am on a "Tamoxifen holiday". What is that you ask? Well, I have decided to take a break from Tamoxifen. I have many reasons for doing this and while I do not encourage others to do this, for me I had to. I know that Tamoxifen is a well studied drug and has many benefits but for me I am wondering if my quality of life is more important than the benefits from this drug.
How it all started is back on November 16th I had a doctor's appointment with a general practitioner who I have since designated as my primary care physician since I didn't have one. I needed help with monitoring my cholesterol and the clinic is really close to my house so it made sense. At my appointment we discussed many things and the biggest complaint I still have is the menopausal side effects that I have listed more than once on my blog and there are a lot of them!!! She talked to me about a drug called Brisdelle and how it has been approved for treating hot flashes in menopausal women, however when she typed it in it came up with a big red flag that it can reduce the effectiveness of Tamoxifen so she couldn't let me try it. I wasn't surprised! There isn't many options and I believe I have exhausted them all. I left feeling defeated once again. Before I left I had to get blood drawn for a complete panel. I got a call on Thursday, November 17th that said my cholesterol has gone down quite a bit since I have been on my statin but they want to double my statin dose to get it down even further. My cholesterol has always been high but lately it has been through the roof almost topping out at 300. The next conversation we had was quite concerning, my A1C levels are pointing to diabetes. Right now I am classified as a per-diabetic. So of course I turn to my friend Google and start learning more about Tamoxifen and of course the high cholesterol and diabetes can be side effects of this drug. I was in tears. Right then and there I decided to stop Tamoxifen, I haven't had any since November 16th. I am now 13 days without it and I feel great. My hot flashes are almost non-existent now and when I do have one it is so minor compared to what they were on Tamoxifen. Each time I got a hot flash, I had to pee (real bad) and there were many times that I would leave a little bit because of the urgency. Now that the hot-flashes are not just little tiny warm flushes, I am not peeing my pants anymore!. Last night I got a little over 8 hours of sleep without waking up once. I am in tears even typing this out because I feel so dang good, I can't explain in words how great I feel. I have gone over two years now without sleeping more than about 1-1/2 hours to maybe 3 hours at a time before waking up due to my hot flashes. The other main side effect I have noticed is my "foggy brain" that I had been contributing to chemo a.k.a "chemo brain" probably isn't chemo brain after all. It had to be Tamoxifen that was making me feel that way. It is hard to describe but I seriously felt like I was trapped in my body and couldn't get out. It is a really weird, hard feeling to feel so foggy all of the time. So to say my quality has improved in just 13 days is an understatement. I forgot what it feels like to be me. It has been a long two years since I have felt this way and I really like being me and not someone else that Tamoxifen was making me. I have also ditched the Gabapentin that I was taking to help get me a little sleep at night. I see no need for it now that my hot flashes are so minor that I am sure they are happening but I don't notice them. All the while these two drugs have made me gain almost 20 pounds since I finished chemo. I had to taper the Gabapentin because it can have nasty side effects. I have now been without it for 5 nights. I sure hope to finally lose some of this excess weight I have gained. Even if I can just drop the 20lbs that I gained I will be happy. My goal is to get my weight down a bit and hopefully get my A1C levels down and possibly be able to get my cholesterol down too without the statin drugs. I am sure that I will remain in menopause and that is okay now that my hot flashes have subsided quite a bit. I used to say what I wouldn't give for 5-10 hot flashes a day and now here I am. I am so very happy!!!!
So where do I go from here? Right now we are calling this a "drug holiday". When I saw my oncologist for a 4 month followup on Monday and told her about what I have done, she was clearly not happy. She told me that I really need this drug for 10 years and I shouted out "absolutely not". I said my quality of life is more important than my quantity of life. I told her if I had to continue to feel that lousy, I would rather be dead. I know those words are harsh but I HATE feeling the way I have been feeling. She told me it is okay to take a "drug holiday" but that she will be calling me in a month to discuss this further. She said she is going to test my hormone levels again and if they are still consistent with menopause then I can try the aromatase inhibitor drugs. I am willing to give these drugs a try, I believe there are three of them and I will try all of them before I give up completely on the blockers. I want to know that I have tried everything out there before I make my final decision. I do know that I don't want Tamoxifen ever again. Have I said how great I feel? I just wish you all could feel the way I felt before and the way I feel today and then you might understand more. I know I am not the only one out there that cannot tolerate Tamoxifen.
So the rest of my appointment went well other than her being dissatisfied with my decision to stop Tamoxifen but on the other hand she did say she understands that quality of life is important too. She told me to reschedule for another 4 months and that she would call me in a month to discuss all of the above. I didn't schedule another appointment because I have an appointment made at the Huntsman Cancer Institute in SLC. I have made the decision to get a second opinion and I may transfer my care to them. They are one of the top cancer hospitals in the United States. I know that they are constantly researching and have new trials going every day. My appointment is scheduled for December 15th and I hope to discuss the hormone therapy as well as my care going forward should I decide to not ever go back on these drugs. I know I might be sealing my fate by stopping this drug but I do believe in God and I do believe that our story was written before us coming here and no matter what I do with this choice that is before me, I will die at the exact time and day that I am supposed to and not a minute too soon and not a minute too late. When God needs me he will call me home and I have to have faith in His plan. I look at all the ways I could die right now, a heart attack from my extremely high cholesterol or from diabetes or from cancer. Right now it makes sense for me to eliminate the drug that is causing all of these other problems for me and live the best life that I can while feeling this great. Sure cancer might come back and bite me but it could even if I am on the hormone blockers.
Life is precious and if you feel good right now please, please enjoy it and embrace it for tomorrow it could be very different. I know first hand how fast life can change. I don't know why but this song sticks in my head and it is from the movie Tangled. It is seriously how I feel at this exact moment with God in control of my life:
"I See The Light"
How it all started is back on November 16th I had a doctor's appointment with a general practitioner who I have since designated as my primary care physician since I didn't have one. I needed help with monitoring my cholesterol and the clinic is really close to my house so it made sense. At my appointment we discussed many things and the biggest complaint I still have is the menopausal side effects that I have listed more than once on my blog and there are a lot of them!!! She talked to me about a drug called Brisdelle and how it has been approved for treating hot flashes in menopausal women, however when she typed it in it came up with a big red flag that it can reduce the effectiveness of Tamoxifen so she couldn't let me try it. I wasn't surprised! There isn't many options and I believe I have exhausted them all. I left feeling defeated once again. Before I left I had to get blood drawn for a complete panel. I got a call on Thursday, November 17th that said my cholesterol has gone down quite a bit since I have been on my statin but they want to double my statin dose to get it down even further. My cholesterol has always been high but lately it has been through the roof almost topping out at 300. The next conversation we had was quite concerning, my A1C levels are pointing to diabetes. Right now I am classified as a per-diabetic. So of course I turn to my friend Google and start learning more about Tamoxifen and of course the high cholesterol and diabetes can be side effects of this drug. I was in tears. Right then and there I decided to stop Tamoxifen, I haven't had any since November 16th. I am now 13 days without it and I feel great. My hot flashes are almost non-existent now and when I do have one it is so minor compared to what they were on Tamoxifen. Each time I got a hot flash, I had to pee (real bad) and there were many times that I would leave a little bit because of the urgency. Now that the hot-flashes are not just little tiny warm flushes, I am not peeing my pants anymore!. Last night I got a little over 8 hours of sleep without waking up once. I am in tears even typing this out because I feel so dang good, I can't explain in words how great I feel. I have gone over two years now without sleeping more than about 1-1/2 hours to maybe 3 hours at a time before waking up due to my hot flashes. The other main side effect I have noticed is my "foggy brain" that I had been contributing to chemo a.k.a "chemo brain" probably isn't chemo brain after all. It had to be Tamoxifen that was making me feel that way. It is hard to describe but I seriously felt like I was trapped in my body and couldn't get out. It is a really weird, hard feeling to feel so foggy all of the time. So to say my quality has improved in just 13 days is an understatement. I forgot what it feels like to be me. It has been a long two years since I have felt this way and I really like being me and not someone else that Tamoxifen was making me. I have also ditched the Gabapentin that I was taking to help get me a little sleep at night. I see no need for it now that my hot flashes are so minor that I am sure they are happening but I don't notice them. All the while these two drugs have made me gain almost 20 pounds since I finished chemo. I had to taper the Gabapentin because it can have nasty side effects. I have now been without it for 5 nights. I sure hope to finally lose some of this excess weight I have gained. Even if I can just drop the 20lbs that I gained I will be happy. My goal is to get my weight down a bit and hopefully get my A1C levels down and possibly be able to get my cholesterol down too without the statin drugs. I am sure that I will remain in menopause and that is okay now that my hot flashes have subsided quite a bit. I used to say what I wouldn't give for 5-10 hot flashes a day and now here I am. I am so very happy!!!!
So where do I go from here? Right now we are calling this a "drug holiday". When I saw my oncologist for a 4 month followup on Monday and told her about what I have done, she was clearly not happy. She told me that I really need this drug for 10 years and I shouted out "absolutely not". I said my quality of life is more important than my quantity of life. I told her if I had to continue to feel that lousy, I would rather be dead. I know those words are harsh but I HATE feeling the way I have been feeling. She told me it is okay to take a "drug holiday" but that she will be calling me in a month to discuss this further. She said she is going to test my hormone levels again and if they are still consistent with menopause then I can try the aromatase inhibitor drugs. I am willing to give these drugs a try, I believe there are three of them and I will try all of them before I give up completely on the blockers. I want to know that I have tried everything out there before I make my final decision. I do know that I don't want Tamoxifen ever again. Have I said how great I feel? I just wish you all could feel the way I felt before and the way I feel today and then you might understand more. I know I am not the only one out there that cannot tolerate Tamoxifen.
So the rest of my appointment went well other than her being dissatisfied with my decision to stop Tamoxifen but on the other hand she did say she understands that quality of life is important too. She told me to reschedule for another 4 months and that she would call me in a month to discuss all of the above. I didn't schedule another appointment because I have an appointment made at the Huntsman Cancer Institute in SLC. I have made the decision to get a second opinion and I may transfer my care to them. They are one of the top cancer hospitals in the United States. I know that they are constantly researching and have new trials going every day. My appointment is scheduled for December 15th and I hope to discuss the hormone therapy as well as my care going forward should I decide to not ever go back on these drugs. I know I might be sealing my fate by stopping this drug but I do believe in God and I do believe that our story was written before us coming here and no matter what I do with this choice that is before me, I will die at the exact time and day that I am supposed to and not a minute too soon and not a minute too late. When God needs me he will call me home and I have to have faith in His plan. I look at all the ways I could die right now, a heart attack from my extremely high cholesterol or from diabetes or from cancer. Right now it makes sense for me to eliminate the drug that is causing all of these other problems for me and live the best life that I can while feeling this great. Sure cancer might come back and bite me but it could even if I am on the hormone blockers.
Life is precious and if you feel good right now please, please enjoy it and embrace it for tomorrow it could be very different. I know first hand how fast life can change. I don't know why but this song sticks in my head and it is from the movie Tangled. It is seriously how I feel at this exact moment with God in control of my life:
"I See The Light"
All those days watching from the windows
All those years outside looking in
All that time never even knowing
Just how blind I've been
Now I'm here blinking in the starlight
Now I'm here suddenly I see
Standing here it's all so clear
I'm where I'm meant to be
And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything looks different
Now that I see you
All those days chasing down a daydream
All those years living in a blur
All that time never truly seeing
Things, the way they were
Now she's here shining in the starlight
Now she's here suddenly I know
If she's here it's crystal clear
I'm where I'm meant to go
And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything is different
Now that I see you
All those years outside looking in
All that time never even knowing
Just how blind I've been
Now I'm here blinking in the starlight
Now I'm here suddenly I see
Standing here it's all so clear
I'm where I'm meant to be
And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything looks different
Now that I see you
All those days chasing down a daydream
All those years living in a blur
All that time never truly seeing
Things, the way they were
Now she's here shining in the starlight
Now she's here suddenly I know
If she's here it's crystal clear
I'm where I'm meant to go
And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything is different
Now that I see you
I have said before that I do not practice an organized religion but that I am a very spiritual person. I was a spiritual person before my cancer journey too. However, I am so much closer to God now and have a clearer understanding of this life and our eternal life that we will be granted one day when we journey back to heaven. I am firm believer that we are here to help one another and treat one another kindly. I wish everybody could remember this saying when they are treating someone poorly: "Be kind, for everyone you meet is fighting a battle you know nothing about". I am praying constantly for peace, comfort and clarity for the decision that I need to make regarding Tamoxifen, ovary suppression or the other hormone blockers. I don't want any more anxiety from cancer in my life. I don't have time for it. I want each day that I feel great to be a gift.
Saturday, November 5, 2016
2 year cancerversary
November 3, 2016
So here we are a day that I almost forgot about until I was in the shower this morning and then I remembered it is November 3rd. I would like to think of today as just a normal Thursday, I go to work and then take Kaci to dance at 4:00PM, make dinner and get her picked up at 6:00PM, do any homework she might have and call it a night. Today is going to be a normal day, a good day at that! I don't want my 2 year cancerversary to rule my day, I want it to be a day that I celebrate.
I am contemplating changing oncologists, not because I don't like my current oncologist, I do but I have questions and I don't feel like I am getting all the answers. In fact sometimes he giggles at what I ask and then I feel like an idiot for asking them, and anytime I ask about the hot flashes that are continuing to rule my word he just says "be patient, they won't last forever", well almost 2 years into it and they have not eased up at all. I really think I am going to make an appointment with someone at the Huntsman Cancer Institute in SLC. They are constantly researching and have new clinical trials going all the time. I really want to be somewhere where I can ask all of my questions and be involved with whatever "new" options there may be. A few of my friends go to doctors at Huntsman and from what they say it doesn't matter who you see, the group of doctors meet to discuss each and every case and then report back to the patient, so not only are you seeing your doctor but all of the other doctors are involved in your care as well. So basically you get the best of the best. I have always said if my cancer comes back I would go to Huntsman but I have since decided that there is no time like now to start going down there. Sure it will be about an hour drive through a lot of traffic but after this next 4 month followup this month I should go on a 6 month schedule or at least that is what my current oncologist has said. I will leave it up to my new doctor to decide my schedule.
Yesterday, November 2nd was mine and Jeff's 15 year anniversary. Me and Kaci have been sick for almost three weeks and Jeff was just starting with a cold so he wasn't feeling his best. We went to dinner anyway to celebrate and for the first time we didn't have anyone to watch Kaci so she came along with us. My mom was at work and Jeff's mom offered but it was a long way for her to come up to watch Kaci for just the short amount of time we would be gone. We could have waited and celebrated on another day but Jeff's schoolwork is taking over his weekends and most of his week day nights so we thought it would be best to just go last night on our actual anniversary. We wanted to plan a little trip but once again school has taken over. It is okay though, he is almost done. He will be graduating on April 28th next year. We have decided we are going to celebrate his graduation as well as our 15th year anniversary with a cruise to Alaska. We have invited our parents to come along and help us celebrate, we hope they are all able to make it. We haven't planned it yet but want to go either in late June or early July. I get so nervous booking a trip that far out because I am afraid that something will happen with me and we will have to cancel. I would rather not have it planned than to have it planned and have to cancel. It is a mind game that I play with myself and after having to cancel our Christmas Disneyworld trip with our family in 2014 I don't want to have to do that to all of them again. I know they wouldn't care but it makes me feel so bad. However, with a cruise I do need to get it booked right away and I can cancel with a full refund and even buy the insurance just in case. The nice thing about the cruise we are going to do is that we leave from Seattle so if I did have to cancel airfare I wouldn't be out that much money. See here I go again fearing that my cancer will return. I just wish I could turn that part of my brain completely off, to never think about it again but I can't. Being a survivor is so dang hard and until you are in my shoes you would never understand the daily battle.
Anyway I will get through today and I will make it a point to smile more and say hello to everyone I see because why wouldn't I? Today is going to be a great day and I am going to make new memories.
Here are a couple of pictures of us last night at dinner celebrating our 15 year anniversary together as a family. It really was such a beautiful night in the mountains having a yummy dinner.
So here we are a day that I almost forgot about until I was in the shower this morning and then I remembered it is November 3rd. I would like to think of today as just a normal Thursday, I go to work and then take Kaci to dance at 4:00PM, make dinner and get her picked up at 6:00PM, do any homework she might have and call it a night. Today is going to be a normal day, a good day at that! I don't want my 2 year cancerversary to rule my day, I want it to be a day that I celebrate.
I am contemplating changing oncologists, not because I don't like my current oncologist, I do but I have questions and I don't feel like I am getting all the answers. In fact sometimes he giggles at what I ask and then I feel like an idiot for asking them, and anytime I ask about the hot flashes that are continuing to rule my word he just says "be patient, they won't last forever", well almost 2 years into it and they have not eased up at all. I really think I am going to make an appointment with someone at the Huntsman Cancer Institute in SLC. They are constantly researching and have new clinical trials going all the time. I really want to be somewhere where I can ask all of my questions and be involved with whatever "new" options there may be. A few of my friends go to doctors at Huntsman and from what they say it doesn't matter who you see, the group of doctors meet to discuss each and every case and then report back to the patient, so not only are you seeing your doctor but all of the other doctors are involved in your care as well. So basically you get the best of the best. I have always said if my cancer comes back I would go to Huntsman but I have since decided that there is no time like now to start going down there. Sure it will be about an hour drive through a lot of traffic but after this next 4 month followup this month I should go on a 6 month schedule or at least that is what my current oncologist has said. I will leave it up to my new doctor to decide my schedule.
Yesterday, November 2nd was mine and Jeff's 15 year anniversary. Me and Kaci have been sick for almost three weeks and Jeff was just starting with a cold so he wasn't feeling his best. We went to dinner anyway to celebrate and for the first time we didn't have anyone to watch Kaci so she came along with us. My mom was at work and Jeff's mom offered but it was a long way for her to come up to watch Kaci for just the short amount of time we would be gone. We could have waited and celebrated on another day but Jeff's schoolwork is taking over his weekends and most of his week day nights so we thought it would be best to just go last night on our actual anniversary. We wanted to plan a little trip but once again school has taken over. It is okay though, he is almost done. He will be graduating on April 28th next year. We have decided we are going to celebrate his graduation as well as our 15th year anniversary with a cruise to Alaska. We have invited our parents to come along and help us celebrate, we hope they are all able to make it. We haven't planned it yet but want to go either in late June or early July. I get so nervous booking a trip that far out because I am afraid that something will happen with me and we will have to cancel. I would rather not have it planned than to have it planned and have to cancel. It is a mind game that I play with myself and after having to cancel our Christmas Disneyworld trip with our family in 2014 I don't want to have to do that to all of them again. I know they wouldn't care but it makes me feel so bad. However, with a cruise I do need to get it booked right away and I can cancel with a full refund and even buy the insurance just in case. The nice thing about the cruise we are going to do is that we leave from Seattle so if I did have to cancel airfare I wouldn't be out that much money. See here I go again fearing that my cancer will return. I just wish I could turn that part of my brain completely off, to never think about it again but I can't. Being a survivor is so dang hard and until you are in my shoes you would never understand the daily battle.
Anyway I will get through today and I will make it a point to smile more and say hello to everyone I see because why wouldn't I? Today is going to be a great day and I am going to make new memories.
Here are a couple of pictures of us last night at dinner celebrating our 15 year anniversary together as a family. It really was such a beautiful night in the mountains having a yummy dinner.
Saturday, October 1, 2016
October and a new picture of myself
So here we are October 1st, a day that I have been dreading. It is breast cancer awareness month and while I am grateful that they promo awareness to help save lives, it causes me so much anxiety. It was two years ago this month that my world turned upside down. Not because I scheduled a routine mammogram but because I found a thickening in my right breast and scheduled a diagnostic mammogram that ultimately let to finding breast cancer. Stage 3 in fact, gosh that is so close to stage 4. I still can't believe it happened to me, a healthy 40 year old with a 9 year old daughter. Cancer doesn't discriminate.
This is also the month they do so many breast cancer walks, retreats etc. This year I have chose not to be a part of them. I don't like to label myself at all anymore. I want to be a normal person and if you see me on the street you will have no idea what I have been through just by looking at me. I want to blend in! This does not mean that I don't support fundraising and helping out a fellow cancer sister or brother. I do all of that in a heartbeat. I am there for anybody who needs to talk or needs my help. I will never turn my back on anyone, even though I must say it is hard to hear their stories and it brings back memories of what I have been through. I feel that in this life we are all here to help others even when it is hard because it might create flashbacks of our own personal hell, we press on and serve our fellow man.
I will get through this month though. I am trying to focus on fall time which I absolutely love. Trying to do a lot of fun activities that doesn't involve skeletons and blood and gore which I cannot handle anymore since I got sick. I would rather smell the fall leaves and see pumpkins and corn stalks and go to corn mazes. We do have a girl trip planned for Disneyland's Halloween time in 2 weeks that I am really excited about. Last year at this time we were getting ready for Disneyworld. It is best that I have something fun planned during the month of October to keep my mind off, you know what.
Summer has come to an end and we had a great time spending so many weekends camping. We started off the summer going to Dinosaur Land in Vernal and then a couple of weeks later going to Moab, UT to go on the ATV trails, it was so hot though, I had a really hard time. I did bring fans that squirt water and that saved me. Then we headed up to our lot in the mountains and put our trailer there for the summer. I must say I am excited for the change of seasons and to finally be home on the weekends to do other things. Of course in another couple of months I will have cabin fever so bad I won't know what to do with myself!!!
We had another cancer scare in our family last month. My mother-in law, Bonnie got diagnosed with colon cancer during a routine colonoscopy. It had been 10 years and one week since her last colonoscopy which is what they suggest. She ended up having surgery to remove 8" of her colon and about 12 lymph nodes for testing. Everything came back great as the cancer had not spread to her lymph nodes. They staged her at 1 and with that chemo is not necessary. I felt so bad for her prior to surgery with all the worry of possibly needing chemo and losing your hair. As women I don't think we fear the sickness that chemo brings as much as losing our hair. I know when I looked in the mirror when I felt like death and I was bald, I think it made me feel even more sick because of how sick I looked, if that makes any sense!!! Colon cancer is what her husband died from just two years prior. I am so thankful for a good diagnosis for her. I had many sleepless nights just worrying about it. I had that "C" word so bad.
Now that I am through camping I have really concentrated on redecorating my house. It was either that or I had to move. I hated my house after treatments, I hated the decor, the furniture and everything about it. It really did cause me great anxiety that I never had before cancer. We decided in January to re-carpet the house and get new furniture for the family room. While that helped me mentally I still had to redecorate too, I needed it to look like a totally different house. We just recently finished our entry room. We went with a batten board wall with hooks, I recovered my bench and put up some new decorations and transformed the whole thing. I love it so much and I am thankful for a good husband who went along with the idea that I found on Pinterest that very week. Yes, I rushed it but when I saw it I just knew that it was what I wanted. I have been to Hobby Lobby at least 2 to 3 times every week for the past 5 weeks. Man, I love that store!!! I have moved onto the family room and the kitchen. I think I am finally done with those rooms. Next up I need to find something for our bonus room wall that you can see the from the living area below. Right now I have our family photo on a canvas up there and it is really hard to look at. It was the photos we had taken right before I had my surgery and started chemo. It was the old me and I really have a hard time looking at any photos with my long hair and thinner frame. I am finally comfortable with where my hair is at however I am not comfortable with my new menopause body that I shouldn't have for another 10 years or so but I do think it is time for some new family photos soon.
Here is a photo of what I look like a year and a half out from chemo. I have lightened my hair and I really do like it. I am going to keep growing it out a bit more though. I am not wanting to grow it out to where it was before but I do want it a little bit longer and all one length so it is easier to do. I also have a picture of me and my puppy that I love so very much.
So now that we are into October I do encourage everyone to do self checks of your breasts often. I also encourage everyone to get your mammograms. I just wish that insurance would pay for mammograms for the younger ones. It is crazy to me how many people I know that were under 40 diagnosed with breast cancer and how many I have known and do know right now that are battling breast cancer re-occurrences and some stage 4 breast cancer which is incurable. Stage 4 or metastatic disease is my greatest fear. I can't ever get it off of my mind. Please keep all of those who are currently fighting and all of those who have fought and won for the time being in your prayers. I know first hand that prayers are not always answered the way we want and I have found that it is best to pray for the strength and comfort to handle whatever it is that God is going to have us go through.
This is also the month they do so many breast cancer walks, retreats etc. This year I have chose not to be a part of them. I don't like to label myself at all anymore. I want to be a normal person and if you see me on the street you will have no idea what I have been through just by looking at me. I want to blend in! This does not mean that I don't support fundraising and helping out a fellow cancer sister or brother. I do all of that in a heartbeat. I am there for anybody who needs to talk or needs my help. I will never turn my back on anyone, even though I must say it is hard to hear their stories and it brings back memories of what I have been through. I feel that in this life we are all here to help others even when it is hard because it might create flashbacks of our own personal hell, we press on and serve our fellow man.
I will get through this month though. I am trying to focus on fall time which I absolutely love. Trying to do a lot of fun activities that doesn't involve skeletons and blood and gore which I cannot handle anymore since I got sick. I would rather smell the fall leaves and see pumpkins and corn stalks and go to corn mazes. We do have a girl trip planned for Disneyland's Halloween time in 2 weeks that I am really excited about. Last year at this time we were getting ready for Disneyworld. It is best that I have something fun planned during the month of October to keep my mind off, you know what.
Summer has come to an end and we had a great time spending so many weekends camping. We started off the summer going to Dinosaur Land in Vernal and then a couple of weeks later going to Moab, UT to go on the ATV trails, it was so hot though, I had a really hard time. I did bring fans that squirt water and that saved me. Then we headed up to our lot in the mountains and put our trailer there for the summer. I must say I am excited for the change of seasons and to finally be home on the weekends to do other things. Of course in another couple of months I will have cabin fever so bad I won't know what to do with myself!!!
We had another cancer scare in our family last month. My mother-in law, Bonnie got diagnosed with colon cancer during a routine colonoscopy. It had been 10 years and one week since her last colonoscopy which is what they suggest. She ended up having surgery to remove 8" of her colon and about 12 lymph nodes for testing. Everything came back great as the cancer had not spread to her lymph nodes. They staged her at 1 and with that chemo is not necessary. I felt so bad for her prior to surgery with all the worry of possibly needing chemo and losing your hair. As women I don't think we fear the sickness that chemo brings as much as losing our hair. I know when I looked in the mirror when I felt like death and I was bald, I think it made me feel even more sick because of how sick I looked, if that makes any sense!!! Colon cancer is what her husband died from just two years prior. I am so thankful for a good diagnosis for her. I had many sleepless nights just worrying about it. I had that "C" word so bad.
Now that I am through camping I have really concentrated on redecorating my house. It was either that or I had to move. I hated my house after treatments, I hated the decor, the furniture and everything about it. It really did cause me great anxiety that I never had before cancer. We decided in January to re-carpet the house and get new furniture for the family room. While that helped me mentally I still had to redecorate too, I needed it to look like a totally different house. We just recently finished our entry room. We went with a batten board wall with hooks, I recovered my bench and put up some new decorations and transformed the whole thing. I love it so much and I am thankful for a good husband who went along with the idea that I found on Pinterest that very week. Yes, I rushed it but when I saw it I just knew that it was what I wanted. I have been to Hobby Lobby at least 2 to 3 times every week for the past 5 weeks. Man, I love that store!!! I have moved onto the family room and the kitchen. I think I am finally done with those rooms. Next up I need to find something for our bonus room wall that you can see the from the living area below. Right now I have our family photo on a canvas up there and it is really hard to look at. It was the photos we had taken right before I had my surgery and started chemo. It was the old me and I really have a hard time looking at any photos with my long hair and thinner frame. I am finally comfortable with where my hair is at however I am not comfortable with my new menopause body that I shouldn't have for another 10 years or so but I do think it is time for some new family photos soon.
Here is a photo of what I look like a year and a half out from chemo. I have lightened my hair and I really do like it. I am going to keep growing it out a bit more though. I am not wanting to grow it out to where it was before but I do want it a little bit longer and all one length so it is easier to do. I also have a picture of me and my puppy that I love so very much.
So now that we are into October I do encourage everyone to do self checks of your breasts often. I also encourage everyone to get your mammograms. I just wish that insurance would pay for mammograms for the younger ones. It is crazy to me how many people I know that were under 40 diagnosed with breast cancer and how many I have known and do know right now that are battling breast cancer re-occurrences and some stage 4 breast cancer which is incurable. Stage 4 or metastatic disease is my greatest fear. I can't ever get it off of my mind. Please keep all of those who are currently fighting and all of those who have fought and won for the time being in your prayers. I know first hand that prayers are not always answered the way we want and I have found that it is best to pray for the strength and comfort to handle whatever it is that God is going to have us go through.
Thursday, August 11, 2016
4 month check up and my 42nd Birthday!!!!
I had another 4 month check up with my oncologist on July 28th. I am late in writing about it but quite frankly I am living the dream and don't like to think back to my cancer days. I do need to write this update though even if I am 2 weeks late.
My appointment was at 9:30AM on July 28th and of course I had anxiety leading up to the appointment again. It started a week before but I was able to calm myself a little bit but the closer it got the more "sick" I made myself. I seriously wish you could just turn off your mind sometimes. It is crazy how physically sick your mind can make you.
When I pulled in the parking lot I was sick and had to run to the bathroom before I got checked in. All the nervousness makes my stomach so upset. I got checked in and didn't even have a chance to sit down before they called me back which is a good thing because sitting there in the waiting room would have made my anxiety worse. Nicole took my blood and all my vitals and then I was taken to a room. Seriously the smells and atmosphere in the office is enough to make me want to puke. Nothing against anyone that works there but after going through chemo and how sick it made me, the flashbacks are almost just as bad and I literally feel the way I did while going through chemo, it is crazy! My doctor came in to greet us and wished me a Happy Birthday on Saturday. I thought that was very nice of him. Before cancer my birthday wasn't a big deal but now it is a very big deal because I want to have many more of them. We talked about how I have been feeling and if I had any concerns. I told him I feel the same and nothing has changed since last time. The menopausal symptoms still give me a lot of discomfort. The arthritis in my legs continues to make me walk like an old lady. Yada, yada, yada!!!!!
I talked to my oncologist about seeing "other" doctors like my OB GYN, my surgeon and radiation oncologist. I am really just done with doctors other than my oncologist. He told me that there isn't a need to see my surgeon or radiation oncologist and quite possibly my OB/GYN if I don't want to. Well, I don't want to. My radiation oncologists office has called me three times to make an appointment and even sent a reminder in the mail. I have ignored them all and it feels good, not because I don't like the people because I do like them very much, it is that I feel like I am in control of my life and body finally! I don't want to spend more money on worthless doctors appointments and more anxiety than I care to have. My oncologist told me that he would take care of all my of needs however I will need to see someone separate for my high cholesterol. He recommended someone in general practice (I do not want to go back to my OB/GYN see my post about breaking up with a doctor). I have someone in mind and I have seen her a time or two before as has Kaci and I really like her plus her office is really close to my home. So for now I will keep taking my statin that the last doctor gave me until I run out and then I will make an appointment with the general practice doctor. I would like to see if my cholesterol has come down or not after 6 months of taking it before I run into her office.
My blood work results came back good. He checked my hormone levels and they continue to show that I am in menopause however he said there is still a chance that I might come out of it. I just don't feel like that is going to happen for me though. I think it is permanent especially since the women in my family all started menopause in their late 30's or early 40's. He also checked my chest wall and armpits for anything unusual and didn't find anything.
I asked about increasing my Gabapentin for the hot flashes so he gave me a higher dose and I can play with it a little bit. I don't think it is going to work for me. I have increased my dosage and it has made me a walking zombie and my hot flashes are still just as strong. I am getting to the point that I am just going to have to accept them for what they are. They never get easier though and some of them still continue to be quite debilitating. Same old story!!! I am hoping that over time things will change and I will have some happy news to report about the hot flashes. I would take the pain from the arthritis any day over the hot flashes and until you have experienced both of them I am sure you would too!
I go back and see my oncologist again in 4 months and after that he said I will graduate to every 6 month appointments since this November is two years since my diagnosis. It will be so nice to have these appointments spaced out a little bit further. I still worry a lot about what my future holds but I do try and live in the moment and make plans for the future. I have my good days and bad days but until you go through something like this you won't understand. Life does get back to normal and you do fall into the same old ruts but then certain things take you back and make you appreciate everything again. Just like this morning I was driving into work and the sunrise got to me because it was so beautiful and then I remembered that I need to enjoy this day. God gave us this beautiful sunrise to enjoy and there are beautiful things all around us in this hard life. We need to love and appreciate the beauty that is all around us and that includes everything and everyone.
We had a big weekend planned for my 42nd birthday on July 30th. Since it fell on a Saturday we were able to celebrate up camping and with my 4 month check up behind me I could focus on a great birthday weekend. We left to go camping on Friday night and on Saturday morning (my birthday) we headed up to Monte Cristo parking lot which is only a few miles from our summer camping lot at Sourdough and we met our friends there for a nice scenic 4-wheeling ride to Bear Lake, Utah. The ride to Bear Lake took us about 4 hours and along the way we saw that someone had left their campfire smoldering. We poured our bottled water on it and put dirt on and waited around until we were sure it was out. There have been so many fires around our state from our very hot and dry summer and one of my friends that came with us has some mountain property in Wyoming that caught fire just 2 days before and he wasn't sure if his place had burned or not, sometimes people are so irresponsible. Once we got to Bear Lake we ate at The Bear Lake Pizza Place and got a gigantic pizza called the "Old Ephraim". There were 9 of us and we were able to finish all but about 2 pieces of pizza. Then we had to get a milkshake for dessert and then we headed back. The ride back was very quick since we went a different way, we made it back in 2 hours. When we got back to camp we all took a shower and then Kaci and Mom had made me a birthday cake and I opened presents. It was such a fun birthday. We stayed up camping for another two nights and on Monday before we left Mom and I took a RZR ride around Sourdough and stumbled upon 2 bull moose that were taking a dip in one of the ponds. We watched them for almost an hour. It was absolutely amazing and something I will never forget.
This summer has been super busy with us camping almost every weekend since the middle of June. I have enjoyed it so much and I love it in the mountains. I have also enjoyed having Friday's off from work this summer and being able to spend it with Kaci. We haven't done as much as I had hoped but we have gotten a few things in. I am looking forward to fall and the change of seasons. School starts on August 23rd and Kaci is beyond excited to start 6th grade. Life is about to resume to our normal fast pace with school, homework, dance, friends and work. I guess I am ready for it. I am looking forward to still having my Friday's off from work and that way I can get all of my chores done so we can enjoy our weekends together.
That is all for now. Enjoy the pictures from my fun birthday weekend!
My appointment was at 9:30AM on July 28th and of course I had anxiety leading up to the appointment again. It started a week before but I was able to calm myself a little bit but the closer it got the more "sick" I made myself. I seriously wish you could just turn off your mind sometimes. It is crazy how physically sick your mind can make you.
When I pulled in the parking lot I was sick and had to run to the bathroom before I got checked in. All the nervousness makes my stomach so upset. I got checked in and didn't even have a chance to sit down before they called me back which is a good thing because sitting there in the waiting room would have made my anxiety worse. Nicole took my blood and all my vitals and then I was taken to a room. Seriously the smells and atmosphere in the office is enough to make me want to puke. Nothing against anyone that works there but after going through chemo and how sick it made me, the flashbacks are almost just as bad and I literally feel the way I did while going through chemo, it is crazy! My doctor came in to greet us and wished me a Happy Birthday on Saturday. I thought that was very nice of him. Before cancer my birthday wasn't a big deal but now it is a very big deal because I want to have many more of them. We talked about how I have been feeling and if I had any concerns. I told him I feel the same and nothing has changed since last time. The menopausal symptoms still give me a lot of discomfort. The arthritis in my legs continues to make me walk like an old lady. Yada, yada, yada!!!!!
I talked to my oncologist about seeing "other" doctors like my OB GYN, my surgeon and radiation oncologist. I am really just done with doctors other than my oncologist. He told me that there isn't a need to see my surgeon or radiation oncologist and quite possibly my OB/GYN if I don't want to. Well, I don't want to. My radiation oncologists office has called me three times to make an appointment and even sent a reminder in the mail. I have ignored them all and it feels good, not because I don't like the people because I do like them very much, it is that I feel like I am in control of my life and body finally! I don't want to spend more money on worthless doctors appointments and more anxiety than I care to have. My oncologist told me that he would take care of all my of needs however I will need to see someone separate for my high cholesterol. He recommended someone in general practice (I do not want to go back to my OB/GYN see my post about breaking up with a doctor). I have someone in mind and I have seen her a time or two before as has Kaci and I really like her plus her office is really close to my home. So for now I will keep taking my statin that the last doctor gave me until I run out and then I will make an appointment with the general practice doctor. I would like to see if my cholesterol has come down or not after 6 months of taking it before I run into her office.
My blood work results came back good. He checked my hormone levels and they continue to show that I am in menopause however he said there is still a chance that I might come out of it. I just don't feel like that is going to happen for me though. I think it is permanent especially since the women in my family all started menopause in their late 30's or early 40's. He also checked my chest wall and armpits for anything unusual and didn't find anything.
I asked about increasing my Gabapentin for the hot flashes so he gave me a higher dose and I can play with it a little bit. I don't think it is going to work for me. I have increased my dosage and it has made me a walking zombie and my hot flashes are still just as strong. I am getting to the point that I am just going to have to accept them for what they are. They never get easier though and some of them still continue to be quite debilitating. Same old story!!! I am hoping that over time things will change and I will have some happy news to report about the hot flashes. I would take the pain from the arthritis any day over the hot flashes and until you have experienced both of them I am sure you would too!
I go back and see my oncologist again in 4 months and after that he said I will graduate to every 6 month appointments since this November is two years since my diagnosis. It will be so nice to have these appointments spaced out a little bit further. I still worry a lot about what my future holds but I do try and live in the moment and make plans for the future. I have my good days and bad days but until you go through something like this you won't understand. Life does get back to normal and you do fall into the same old ruts but then certain things take you back and make you appreciate everything again. Just like this morning I was driving into work and the sunrise got to me because it was so beautiful and then I remembered that I need to enjoy this day. God gave us this beautiful sunrise to enjoy and there are beautiful things all around us in this hard life. We need to love and appreciate the beauty that is all around us and that includes everything and everyone.
We had a big weekend planned for my 42nd birthday on July 30th. Since it fell on a Saturday we were able to celebrate up camping and with my 4 month check up behind me I could focus on a great birthday weekend. We left to go camping on Friday night and on Saturday morning (my birthday) we headed up to Monte Cristo parking lot which is only a few miles from our summer camping lot at Sourdough and we met our friends there for a nice scenic 4-wheeling ride to Bear Lake, Utah. The ride to Bear Lake took us about 4 hours and along the way we saw that someone had left their campfire smoldering. We poured our bottled water on it and put dirt on and waited around until we were sure it was out. There have been so many fires around our state from our very hot and dry summer and one of my friends that came with us has some mountain property in Wyoming that caught fire just 2 days before and he wasn't sure if his place had burned or not, sometimes people are so irresponsible. Once we got to Bear Lake we ate at The Bear Lake Pizza Place and got a gigantic pizza called the "Old Ephraim". There were 9 of us and we were able to finish all but about 2 pieces of pizza. Then we had to get a milkshake for dessert and then we headed back. The ride back was very quick since we went a different way, we made it back in 2 hours. When we got back to camp we all took a shower and then Kaci and Mom had made me a birthday cake and I opened presents. It was such a fun birthday. We stayed up camping for another two nights and on Monday before we left Mom and I took a RZR ride around Sourdough and stumbled upon 2 bull moose that were taking a dip in one of the ponds. We watched them for almost an hour. It was absolutely amazing and something I will never forget.
This summer has been super busy with us camping almost every weekend since the middle of June. I have enjoyed it so much and I love it in the mountains. I have also enjoyed having Friday's off from work this summer and being able to spend it with Kaci. We haven't done as much as I had hoped but we have gotten a few things in. I am looking forward to fall and the change of seasons. School starts on August 23rd and Kaci is beyond excited to start 6th grade. Life is about to resume to our normal fast pace with school, homework, dance, friends and work. I guess I am ready for it. I am looking forward to still having my Friday's off from work and that way I can get all of my chores done so we can enjoy our weekends together.
That is all for now. Enjoy the pictures from my fun birthday weekend!
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| The moose that we watched for an hour at Sourdough |
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| The pretty scenery on our ride to Bear Lake |
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| Us at Ephraim's grave |
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| The story of Ephraim the bear |
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| The pizza |
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| Our RZR's and 4 wheelers at the pizza place |
Wednesday, May 25, 2016
The gift that keeps on giving
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!!!
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!!!
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!!!!!
Thursday, March 24, 2016
One year post chemo
Today marks one year since I finished chemotherapy. I can't believe it has been a year already. Time sure flies when you are having fun!
So here I am not in active treatment anymore. I have my life back! However, the anticipation of the appointments at my oncologist office every four months gives me great anxiety as I mentioned in my previous post. I am glad my appointments are every four months now because until about the week before the actual appointment I don't even think about it.
Things are definitely different than before cancer. The treatments have left me with side effects that will last a lifetime. Life changing side effects at that. Everybody always asks me how I am feeling and I usually reply "pretty good" I know they don't have an hour to spare while I explain how I really feel. So how do I really feel? I feel like crap most of the time. My biggest complaint is the hot flashes. They are seriously so debilitating and embarrassing. Try talking to someone in the middle of winter and breaking out in a sweat that makes your hair wet and sweat dripping down your forehead and neck. It plain out sucks and just wait until after the hot flash is gone and you are shaking because you are so cold. It is a never ending battle with me and I am rarely at a good temperature, I still can't believe that estrogen controls every aspect of our bodies as a woman. As I said in my previous post I am increasing my dosage of Gabapentin to hopefully help the hot flashes but I am only on day two of the increase so I haven't noticed anything different. I am waiting for about a week to see if I am getting any relief and if I am not then I will add Effexor to the mix but I am hopeful that I will get some more relief by taking these medications. I do worry though because I remember when I was on Effexor before that it leaves me a bit tired and dizzy and not feeling like myself, plus they have sexual side effects too as if I don't have enough of that already (actually this was why I quit Effexor before but now that menopause and the hormone blocker have left me with these side effects by adding Effexor back I probably won't even notice anything). I only hope that the tiredness and dizziness isn't too bad because I do work full-time and I am a mom, plus my husband is in school so I have taken on all the household chores while he concentrates on his studies. I have so many responsibilities so these side effects only make my life more difficult. I really wish I didn't work so many hours so that I could rest during the day. Taking a little nap does me wonders but most days, at least during the week it is not an option.
So the other nasty side effect that is quite painful actually is the arthritis that has taken up residence in my legs. Getting up in the morning they hurt so bad, I shuffle around like a 90 year old woman. The more I get moving the better they feel but it never totally goes away. I noticed about two weeks ago when we went hiking a little bit in the mountains that my legs are very unstable. I almost fell numerous times. I guess there are things I just can't do very well anymore. I will continue "trying" to hike here and there but I am slow and very unsteady on my feet.
Then of course there are the sexual side effects which I detailed in my previous post that has changed the life of me and my husband forever. Nobody ever told me about these and all the side effects when I first started chemo and maybe I am glad they didn't because I would have been hesitant to proceed with the treatments had I known and I am very thankful for chemotherapy treatment because as of now I am cancer free! Of course these side effects don't affect everybody the same, I think I am the extreme case or maybe not, I really don't know. All I know is sometimes it is very hard to maintain a positive attitude when I feel so bad all the time.
I read something the other day that says after chemotherapy treatments you age 10 years. I don't know if that is true because I feel like I have aged 20 years!!! I have put on weight like most women do with menopause and I can't get it off and I am so over trying to get it off, I don't need added stress in my life. I am eating healthy and exercising and that is all I can do. I have arthritis and hot flashes. I have bought a little hand held fan (instead of turning papers into fans) to keep in my purse so now I am fanning myself just like all the little old ladies do. I even have a little old lady hair cut to go along with it!!!! So you are wondering about my hair? Well it is still short! I don't know what I was thinking but I thought that a year out I would have a cute little bob that would almost be touching my shoulders. I guess I live in a fantasy land or something. It seems each day is different for me as I style my hair because it is constantly growing and changing that I have to find new ways to style it. It has been fun at times and frustrating at times. I just can't wait until I get it all one length (even if it is short) and get my bangs grown out and off of my forehead so that when I have hot flashes and sweat they don't get wet!!!! My hair is still pretty curly but I flat iron it every day but by the end of the day with the all the sweating I have, it usually curls back up. Maybe when it gets longer I will like the curls but right now we fight each other A LOT! So here it is below a current picture of myself. I am so uncomfortable with the way I look and try to stay away from having pictures taken of myself and I am very nervous to post this picture for the world to see but here it is.
So I don't want this post to be so depressing so I do want to say that even with all of these side effects I really do enjoy life. Sometimes it makes it harder to enjoy but I am happy to be alive. I am happy to have more time with my family and to watch my daughter grow up. I am looking forward to many more years with them. I have a lot of plans this summer and as much as I love to travel I always have to have something in the works. Just to have something to look forward keeps me going in a positive direction. This next weekend my mom, daughter and I are taking a trip to Zion's national park, it will be so good for my soul to get out and enjoy nature. I haven't been for some time but the place is amazing and honestly when I am at these beautiful places I really feel so close to God and Heaven and it brings me so much comfort! Next we have a couple of camp trips planned for May and another camp trip to Moab in June which is another beautiful place that I haven't been to in almost 20 years. I am so excited for Kaci to see these places because there isn't anything like them elsewhere in the world. After Moab then we plan to put our trailer up at our lot in the mountains and camp every weekend until after Labor Day. We are tentatively planning a little trip somewhere in October which may or may not happen. Jeff is so close to finishing up his degree and probably won't be able to come, so if we do go it will just be the "girls" again. I am so thankful that he is okay with us taking these little trips without him. I just can't sit back and wait anymore, I feel a sense of urgency to experience as much in life as possible with those who are able to come along. I know he is almost done with school and then he can come on all of these adventures too. We are thinking of California. We love Disneyland so we might just go there or we might go to San Diego or we might just save the money for a "big trip" after Jeff finishes school. Traveling is what I enjoy most in life and where I make the most precious memories and life is about memories so rather than saving all my money in the bank or buying other things, I chose to spend it on trips with my family and friends. I am all about living in the moment because life really is short, why not enjoy it now.
So for now I will carry on and learn to accept the new me even if I am a little broken. My husband tells me I am beautiful inside and out and one day I will believe it! I am in the process of telling myself this everyday, numerous times a day in fact, all in front of the mirror and I will continue to do so. I also pray a lot! I find myself praying at different times during the day. I find that when I am driving home from work that I turn off the radio and pray, everyday! Maintaining such a close relationship to Heavenly Father is important for me and my well being. While it may not work for everyone it works for me.
Until next time..........
So here I am not in active treatment anymore. I have my life back! However, the anticipation of the appointments at my oncologist office every four months gives me great anxiety as I mentioned in my previous post. I am glad my appointments are every four months now because until about the week before the actual appointment I don't even think about it.
Things are definitely different than before cancer. The treatments have left me with side effects that will last a lifetime. Life changing side effects at that. Everybody always asks me how I am feeling and I usually reply "pretty good" I know they don't have an hour to spare while I explain how I really feel. So how do I really feel? I feel like crap most of the time. My biggest complaint is the hot flashes. They are seriously so debilitating and embarrassing. Try talking to someone in the middle of winter and breaking out in a sweat that makes your hair wet and sweat dripping down your forehead and neck. It plain out sucks and just wait until after the hot flash is gone and you are shaking because you are so cold. It is a never ending battle with me and I am rarely at a good temperature, I still can't believe that estrogen controls every aspect of our bodies as a woman. As I said in my previous post I am increasing my dosage of Gabapentin to hopefully help the hot flashes but I am only on day two of the increase so I haven't noticed anything different. I am waiting for about a week to see if I am getting any relief and if I am not then I will add Effexor to the mix but I am hopeful that I will get some more relief by taking these medications. I do worry though because I remember when I was on Effexor before that it leaves me a bit tired and dizzy and not feeling like myself, plus they have sexual side effects too as if I don't have enough of that already (actually this was why I quit Effexor before but now that menopause and the hormone blocker have left me with these side effects by adding Effexor back I probably won't even notice anything). I only hope that the tiredness and dizziness isn't too bad because I do work full-time and I am a mom, plus my husband is in school so I have taken on all the household chores while he concentrates on his studies. I have so many responsibilities so these side effects only make my life more difficult. I really wish I didn't work so many hours so that I could rest during the day. Taking a little nap does me wonders but most days, at least during the week it is not an option.
So the other nasty side effect that is quite painful actually is the arthritis that has taken up residence in my legs. Getting up in the morning they hurt so bad, I shuffle around like a 90 year old woman. The more I get moving the better they feel but it never totally goes away. I noticed about two weeks ago when we went hiking a little bit in the mountains that my legs are very unstable. I almost fell numerous times. I guess there are things I just can't do very well anymore. I will continue "trying" to hike here and there but I am slow and very unsteady on my feet.
Then of course there are the sexual side effects which I detailed in my previous post that has changed the life of me and my husband forever. Nobody ever told me about these and all the side effects when I first started chemo and maybe I am glad they didn't because I would have been hesitant to proceed with the treatments had I known and I am very thankful for chemotherapy treatment because as of now I am cancer free! Of course these side effects don't affect everybody the same, I think I am the extreme case or maybe not, I really don't know. All I know is sometimes it is very hard to maintain a positive attitude when I feel so bad all the time.
I read something the other day that says after chemotherapy treatments you age 10 years. I don't know if that is true because I feel like I have aged 20 years!!! I have put on weight like most women do with menopause and I can't get it off and I am so over trying to get it off, I don't need added stress in my life. I am eating healthy and exercising and that is all I can do. I have arthritis and hot flashes. I have bought a little hand held fan (instead of turning papers into fans) to keep in my purse so now I am fanning myself just like all the little old ladies do. I even have a little old lady hair cut to go along with it!!!! So you are wondering about my hair? Well it is still short! I don't know what I was thinking but I thought that a year out I would have a cute little bob that would almost be touching my shoulders. I guess I live in a fantasy land or something. It seems each day is different for me as I style my hair because it is constantly growing and changing that I have to find new ways to style it. It has been fun at times and frustrating at times. I just can't wait until I get it all one length (even if it is short) and get my bangs grown out and off of my forehead so that when I have hot flashes and sweat they don't get wet!!!! My hair is still pretty curly but I flat iron it every day but by the end of the day with the all the sweating I have, it usually curls back up. Maybe when it gets longer I will like the curls but right now we fight each other A LOT! So here it is below a current picture of myself. I am so uncomfortable with the way I look and try to stay away from having pictures taken of myself and I am very nervous to post this picture for the world to see but here it is.
So I don't want this post to be so depressing so I do want to say that even with all of these side effects I really do enjoy life. Sometimes it makes it harder to enjoy but I am happy to be alive. I am happy to have more time with my family and to watch my daughter grow up. I am looking forward to many more years with them. I have a lot of plans this summer and as much as I love to travel I always have to have something in the works. Just to have something to look forward keeps me going in a positive direction. This next weekend my mom, daughter and I are taking a trip to Zion's national park, it will be so good for my soul to get out and enjoy nature. I haven't been for some time but the place is amazing and honestly when I am at these beautiful places I really feel so close to God and Heaven and it brings me so much comfort! Next we have a couple of camp trips planned for May and another camp trip to Moab in June which is another beautiful place that I haven't been to in almost 20 years. I am so excited for Kaci to see these places because there isn't anything like them elsewhere in the world. After Moab then we plan to put our trailer up at our lot in the mountains and camp every weekend until after Labor Day. We are tentatively planning a little trip somewhere in October which may or may not happen. Jeff is so close to finishing up his degree and probably won't be able to come, so if we do go it will just be the "girls" again. I am so thankful that he is okay with us taking these little trips without him. I just can't sit back and wait anymore, I feel a sense of urgency to experience as much in life as possible with those who are able to come along. I know he is almost done with school and then he can come on all of these adventures too. We are thinking of California. We love Disneyland so we might just go there or we might go to San Diego or we might just save the money for a "big trip" after Jeff finishes school. Traveling is what I enjoy most in life and where I make the most precious memories and life is about memories so rather than saving all my money in the bank or buying other things, I chose to spend it on trips with my family and friends. I am all about living in the moment because life really is short, why not enjoy it now.
So for now I will carry on and learn to accept the new me even if I am a little broken. My husband tells me I am beautiful inside and out and one day I will believe it! I am in the process of telling myself this everyday, numerous times a day in fact, all in front of the mirror and I will continue to do so. I also pray a lot! I find myself praying at different times during the day. I find that when I am driving home from work that I turn off the radio and pray, everyday! Maintaining such a close relationship to Heavenly Father is important for me and my well being. While it may not work for everyone it works for me.
Until next time..........
Monday, March 21, 2016
4 month follow up
Today I had another 4 month follow up at my oncologists office. I can't believe that this Wednesday marks one year since I finished chemotherapy and that I am on a 4 month follow up schedule for a while. I can't wait until I get further out and start on the 6 month schedule and then eventually to a follow up once a year. I will try and get a new picture of my hair at one year post chemo. I would have never believed that my hair would still be this short after a year. I guess I had higher hopes for my hair at one year out. It is growing and I am thankful for it but I am still not comfortable with where it is at.
My feelings are still the same about that office. I have such great anxiety leading up to the appointment and it takes all the strength and courage I have in me to make myself walk into that building. It is nothing against any of the people as I love them all and they are such a great support to me even know. It is just that all the memories come flooding back that I did have cancer and I will be forever changed because of it. As I live each day I tend to forget about "cancer" and everything I went through and I like it that way. I like to feel normal and I don't want people treating me any different because of what I went through and for the most part they don't.
Today I saw a different doctor since my doctor was out. At first I was put out that I wasn't going to see my regular doctor especially when they said to put on a gown because he likes to do an exam and I had a lot of personal things I wanted to discuss that I hadn't talked about before. Jeff turned to me and asked if I would like to reschedule and at first I thought I might but that is not fair as I hadn't even met the guy yet. When he came in and introduced himself I knew I was in good hands. In fact he was one of the co-founders and is actually retired but has come back to fill in since another oncologist in the office had a stroke last year and is unable to practice any longer.
He started with the exam and I told him about a new pain that I have on my side which also happens to be the side where the cancer was. He felt all around and when he pinpointed the area he said that is a muscle and that I probably just pulled it. He said that is not an area where cancer would likely come back to. How I loved hearing those words as I have been so scared about what it might be. I was told in the beginning that with any new aches or pains not to worry or stress about them until after 14 days. Well this one has been going on for four weeks now but then Jeff remembered we moved a pretty big tree in our back yard about 4 weeks ago and then it dawned on me that this is probably where the pain is coming from. The doctor told me not to worry about it for now as muscle strains can take some time to heal. I relaxed completely upon hearing these words.
After that I started asking my questions. I am still having hot flashes like crazy and at first I felt like the Gabapentin was helping make them not so intense. I have been getting about 1-1/2 to 2 hours of uninterrupted sleep at night which was better than waking about twice an hour prior to Gabapentin. Maybe it is still helping take the intensity out of most of them but not enough for me, I want more relief! The longer this goes on the more anxious they make me. He suggested increasing the dosage by taking 300 mg in the morning and 600 mg at night, right now I have only been taking 600 mg at night. He also suggested to try Effexor again along with the Gabapentin but first I am going to increase the Gabapentin and see what that does. He said it is about the quality of life at this point and he can see that I am struggling. He said to try this and if it isn't helping to call them because they can increase the dosage further on both of these drugs and keep trying until I get some relief. I loved that he cared so much about me and told me not to give up and not to wait until my next four month appointment if it isn't helping. Jeff also asked about the cold flashes which happen every bit as frequently as the hot flashes and he said that it is completely normal for someone like me. It is something I have to deal with for who knows how long. He also said I could try Tylenol PM to see if that would help me get some rest but for now I am going to try to increase the Gabapentin and see if that helps me and if it doesn't then I will add the Effexor and then add the Tylenol PM if needed. I don't want to add everything at once because I want to see if some of these on their own will help me without adding other drugs to the mix. This is going to be so hard on me because I am not one that likes taking drugs at all. Tamoxifen is a given and will be a part of my life for a little over 9 more years (yes, I am counting down). I am to the point now that I am going to give in and try these prescription drugs and have hope that I will get some relief.
After that I asked my more personal questions and I am just going to put it out here on my blog for the first time ever and not be embarrassed by it any longer. I asked him about the vaginal dryness, no sex drive what so ever and pain with intercourse which are all horrible side effects of not only menopause but also the side effects of Tamoxifen (hormone blocker). At this point I started to cry because it is so hard for me to talk about. I am still young enough and so is Jeff and I feel like this is so unfair. The doctor was so nice as he talked to both of us about this. He said it is hard especially for someone as young as me and it is a large part of our lives. He said that he would okay an estrogen cream to help the dryness which might also help with the pain of intercourse but unfortunately it won't help my lack of drive. He said the only thing that can help me feel like a whole woman again would be estrogen and I cannot have that due to my high risk of re-occurrence. He said I need to call my OB/GYN and get the cream but make sure that it is the lowest concentrated dose possible. He said my body would absorb some of the estrogen but the Tamoxifen will take care of that but in turn I will get some relief down there. I am going to think about this cream for now as it seems so scary to me to request something with estrogen in it. I go back to my OB/GYN at the first of May so I think I will discuss it with her at that time.
I love that my oncologists office can run the complete blood panel right in their office with no waiting. All of my numbers looked great which was added relief for me. They are however, this time sending some of it out for additional testing for liver enzymes and a few others and we will get those results in a few days. Jeff and I aren't expecting them to be "bad" though. Everything else with my blood counts was completely normal so we have no reason to believe that these other tests will show anything different.
As far as my diet and exercise goes. I am still following the "My Plate" guide that my dietician suggested for me with the exception of a few cheats during the weekends (life is short so you have got to enjoy it once in a while). I also strive to walk 30 minutes a day either on my treadmill or outside as it really does help the arthritis in my legs. I am still at the same weight as I was when I finished chemo. I am so over trying to lose weight. I don't need the added stress in my life. I want to enjoy each day and as long as I am striving to eat healthy and exercise then that is all I can ask for. Being in menopause plus being on the hormone blockers is a disaster for trying to lose weight. It almost always never happens. As women our hormones control just about everything in our bodies and metabolism is another one it controls and I have zero hormones running through my body. I am trying to tell myself each and every day that I am beautiful no matter what. All the scars across my chest, my lack of breasts, my being over weight and my short haircut that I am still not comfortable with are all a part of my journey and I need to embrace them. Self help talk can go along way.
I am so thankful for a kind and caring husband that goes with me to these appointments so that I do not have to go alone. I am also thankful for his understanding with the "new" me. I do not have the quality of life I once had and I know it is extremely hard on both of us. It messes with me emotionally so much, I have so much guilt that goes along with it even though it is not something I asked for or brought on myself.
My feelings are still the same about that office. I have such great anxiety leading up to the appointment and it takes all the strength and courage I have in me to make myself walk into that building. It is nothing against any of the people as I love them all and they are such a great support to me even know. It is just that all the memories come flooding back that I did have cancer and I will be forever changed because of it. As I live each day I tend to forget about "cancer" and everything I went through and I like it that way. I like to feel normal and I don't want people treating me any different because of what I went through and for the most part they don't.
Today I saw a different doctor since my doctor was out. At first I was put out that I wasn't going to see my regular doctor especially when they said to put on a gown because he likes to do an exam and I had a lot of personal things I wanted to discuss that I hadn't talked about before. Jeff turned to me and asked if I would like to reschedule and at first I thought I might but that is not fair as I hadn't even met the guy yet. When he came in and introduced himself I knew I was in good hands. In fact he was one of the co-founders and is actually retired but has come back to fill in since another oncologist in the office had a stroke last year and is unable to practice any longer.
He started with the exam and I told him about a new pain that I have on my side which also happens to be the side where the cancer was. He felt all around and when he pinpointed the area he said that is a muscle and that I probably just pulled it. He said that is not an area where cancer would likely come back to. How I loved hearing those words as I have been so scared about what it might be. I was told in the beginning that with any new aches or pains not to worry or stress about them until after 14 days. Well this one has been going on for four weeks now but then Jeff remembered we moved a pretty big tree in our back yard about 4 weeks ago and then it dawned on me that this is probably where the pain is coming from. The doctor told me not to worry about it for now as muscle strains can take some time to heal. I relaxed completely upon hearing these words.
After that I started asking my questions. I am still having hot flashes like crazy and at first I felt like the Gabapentin was helping make them not so intense. I have been getting about 1-1/2 to 2 hours of uninterrupted sleep at night which was better than waking about twice an hour prior to Gabapentin. Maybe it is still helping take the intensity out of most of them but not enough for me, I want more relief! The longer this goes on the more anxious they make me. He suggested increasing the dosage by taking 300 mg in the morning and 600 mg at night, right now I have only been taking 600 mg at night. He also suggested to try Effexor again along with the Gabapentin but first I am going to increase the Gabapentin and see what that does. He said it is about the quality of life at this point and he can see that I am struggling. He said to try this and if it isn't helping to call them because they can increase the dosage further on both of these drugs and keep trying until I get some relief. I loved that he cared so much about me and told me not to give up and not to wait until my next four month appointment if it isn't helping. Jeff also asked about the cold flashes which happen every bit as frequently as the hot flashes and he said that it is completely normal for someone like me. It is something I have to deal with for who knows how long. He also said I could try Tylenol PM to see if that would help me get some rest but for now I am going to try to increase the Gabapentin and see if that helps me and if it doesn't then I will add the Effexor and then add the Tylenol PM if needed. I don't want to add everything at once because I want to see if some of these on their own will help me without adding other drugs to the mix. This is going to be so hard on me because I am not one that likes taking drugs at all. Tamoxifen is a given and will be a part of my life for a little over 9 more years (yes, I am counting down). I am to the point now that I am going to give in and try these prescription drugs and have hope that I will get some relief.
After that I asked my more personal questions and I am just going to put it out here on my blog for the first time ever and not be embarrassed by it any longer. I asked him about the vaginal dryness, no sex drive what so ever and pain with intercourse which are all horrible side effects of not only menopause but also the side effects of Tamoxifen (hormone blocker). At this point I started to cry because it is so hard for me to talk about. I am still young enough and so is Jeff and I feel like this is so unfair. The doctor was so nice as he talked to both of us about this. He said it is hard especially for someone as young as me and it is a large part of our lives. He said that he would okay an estrogen cream to help the dryness which might also help with the pain of intercourse but unfortunately it won't help my lack of drive. He said the only thing that can help me feel like a whole woman again would be estrogen and I cannot have that due to my high risk of re-occurrence. He said I need to call my OB/GYN and get the cream but make sure that it is the lowest concentrated dose possible. He said my body would absorb some of the estrogen but the Tamoxifen will take care of that but in turn I will get some relief down there. I am going to think about this cream for now as it seems so scary to me to request something with estrogen in it. I go back to my OB/GYN at the first of May so I think I will discuss it with her at that time.
I love that my oncologists office can run the complete blood panel right in their office with no waiting. All of my numbers looked great which was added relief for me. They are however, this time sending some of it out for additional testing for liver enzymes and a few others and we will get those results in a few days. Jeff and I aren't expecting them to be "bad" though. Everything else with my blood counts was completely normal so we have no reason to believe that these other tests will show anything different.
As far as my diet and exercise goes. I am still following the "My Plate" guide that my dietician suggested for me with the exception of a few cheats during the weekends (life is short so you have got to enjoy it once in a while). I also strive to walk 30 minutes a day either on my treadmill or outside as it really does help the arthritis in my legs. I am still at the same weight as I was when I finished chemo. I am so over trying to lose weight. I don't need the added stress in my life. I want to enjoy each day and as long as I am striving to eat healthy and exercise then that is all I can ask for. Being in menopause plus being on the hormone blockers is a disaster for trying to lose weight. It almost always never happens. As women our hormones control just about everything in our bodies and metabolism is another one it controls and I have zero hormones running through my body. I am trying to tell myself each and every day that I am beautiful no matter what. All the scars across my chest, my lack of breasts, my being over weight and my short haircut that I am still not comfortable with are all a part of my journey and I need to embrace them. Self help talk can go along way.
I am so thankful for a kind and caring husband that goes with me to these appointments so that I do not have to go alone. I am also thankful for his understanding with the "new" me. I do not have the quality of life I once had and I know it is extremely hard on both of us. It messes with me emotionally so much, I have so much guilt that goes along with it even though it is not something I asked for or brought on myself.
Wednesday, February 24, 2016
Redecorating the house
At the end of last year we were trying to decide if we should start finishing the basement now that I was finished with treatment or redecorate the house that was bothering me so much. We had planned on finishing the basement in January 2015 but I was going through chemo and money was tight paying for all of my medical bills. Finishing the basement would take a lot of money and I am nervous to spend that kind of money right now because you never know what can happen. I also knew how bad the interior of my house reminded me of cancer and also the memories of my beloved dogs who had just passed away. I seriously wanted to move if I couldn't make a change. In talking to other people who have gone through what I have,
some of them did decide to move. I
thought it would be cheaper to redecorate and I just don't have it in me
for all the work it takes to move, let alone Kaci is in a school she
loves with friends that live nearby. I didn't feel it was fair to her
to move right now.
As I have mentioned before, last February I redecorated our bedroom because I just couldn't stand it anymore. I had spent countless days/hours/months in there and the sight of it made me sick to my stomach. With the mounting medical bills that is the only room I could afford to do at that moment and I felt that was the most important since I knew I would be spending another couple of months in bed. It made me feel better at the time and I just learned to look past the rest of the house.
So right after Christmas I started hitting the stores to get ideas. My main goal was to get rid of all the red in my house since that color was spread throughout every room except my bedroom and bathroom. I started with changing out a few decorations but the house still looked the same to me. Then we started looking at carpet and decided to re-carpet the house. When we built the house the cheapest carpet was put in and it didn't wear well at all. The carpet was in terrible shape and since Jake (my dog) had just passed away and with all of his "accidents" over the years and towards the end of his life the drooling blood, it was time. In fact we always said when Jakey Boy goes we are going to get new carpet (sorry buddy but its true). We spent hours cleaning out each room as we moved the furniture in preparation. Re-carpeting is the next best thing to moving! We had collected so much in the last 4-1/2 years since we moved in and it was a great time to get rid of some things. After the house was re-carpeted with lovely thick padding and plush carpet it is like walking on clouds. I have never had this nice of carpet before and this didn't disappoint. It was worth spending a little more money and getting exactly what we wanted. It looked beautiful and then we put our old furniture back in the family room and I hated it. It looked like we had such a nice house now but with old, semi-outdated furniture. Last fall we had been eying some furniture for our family room but decided to wait until we got the basement done. Well, since we didn't do the basement and was working on the main level of the house we decided to get the furniture as well. Thank goodness for our excellent credit and 18/24 months no interest. After the carpet and furniture was in I took down the rest of the "red decor". I have bought a few things like new rugs, towels for the kitchen and a few decorations for the cabinets. I haven't finished it yet but have decided to take a break. I got so overwhelmed and ended up buying and returning numerous items that I felt just didn't fit. I am going to take it easy for a while and if/when I see something I will know. In the meantime my house looks great and the "old memories" of the year that I went through surgery, chemo and radiation and the loss of my dogs are long gone. I haven't forgotten them completely as they will always be a part of me, but the change in my house is exactly what I needed and for the most part what my family needed.
It is nice to have our main living area just how I want it. It is so fresh and new and makes me happy looking at it. My house is my new fresh start and I love it. Here is to making a lot of good memories with my family in our home that we have put so much work and love in to.
As I have mentioned before, last February I redecorated our bedroom because I just couldn't stand it anymore. I had spent countless days/hours/months in there and the sight of it made me sick to my stomach. With the mounting medical bills that is the only room I could afford to do at that moment and I felt that was the most important since I knew I would be spending another couple of months in bed. It made me feel better at the time and I just learned to look past the rest of the house.
So right after Christmas I started hitting the stores to get ideas. My main goal was to get rid of all the red in my house since that color was spread throughout every room except my bedroom and bathroom. I started with changing out a few decorations but the house still looked the same to me. Then we started looking at carpet and decided to re-carpet the house. When we built the house the cheapest carpet was put in and it didn't wear well at all. The carpet was in terrible shape and since Jake (my dog) had just passed away and with all of his "accidents" over the years and towards the end of his life the drooling blood, it was time. In fact we always said when Jakey Boy goes we are going to get new carpet (sorry buddy but its true). We spent hours cleaning out each room as we moved the furniture in preparation. Re-carpeting is the next best thing to moving! We had collected so much in the last 4-1/2 years since we moved in and it was a great time to get rid of some things. After the house was re-carpeted with lovely thick padding and plush carpet it is like walking on clouds. I have never had this nice of carpet before and this didn't disappoint. It was worth spending a little more money and getting exactly what we wanted. It looked beautiful and then we put our old furniture back in the family room and I hated it. It looked like we had such a nice house now but with old, semi-outdated furniture. Last fall we had been eying some furniture for our family room but decided to wait until we got the basement done. Well, since we didn't do the basement and was working on the main level of the house we decided to get the furniture as well. Thank goodness for our excellent credit and 18/24 months no interest. After the carpet and furniture was in I took down the rest of the "red decor". I have bought a few things like new rugs, towels for the kitchen and a few decorations for the cabinets. I haven't finished it yet but have decided to take a break. I got so overwhelmed and ended up buying and returning numerous items that I felt just didn't fit. I am going to take it easy for a while and if/when I see something I will know. In the meantime my house looks great and the "old memories" of the year that I went through surgery, chemo and radiation and the loss of my dogs are long gone. I haven't forgotten them completely as they will always be a part of me, but the change in my house is exactly what I needed and for the most part what my family needed.
It is nice to have our main living area just how I want it. It is so fresh and new and makes me happy looking at it. My house is my new fresh start and I love it. Here is to making a lot of good memories with my family in our home that we have put so much work and love in to.
Wednesday, February 17, 2016
A new friend for both me and Kaci
Something great happened this past weekend. My daughter has met a
new friend at school and played over at her house for the first time on
Saturday. When I picked her up she said that this friends mom went
through breast cancer too. Well these two cute girls thought it would
be a good idea to get us together for a girls day out. So on Monday
they had us meet at the mall so that we could take them to Quilted Bear
to get Beanie Boo's and then to Pretzel Maker for snacks and smoothies
and then to the movie. They thought it would be nice for us to
have time to talk about our experiences. I can't even describe how
powerful it is to have someone physically standing by my side and knowing
exactly what I go through on a daily basis. While I don't wish this experience on anybody it is nice to have a friend who has gone through the same thing so that I don't feel so alone in this world.
You cannot ever truly understand the physical limitations as well as the emotional effect that breast cancer has on a person until you have gone through it yourself. For instance we went bowling on Sunday for Valentine's Day. I didn't think anything of it but it was so hard for me to move that arm and it was actually a little painful, my skin is still so tight on the right side where I had radiation. I decided to just let Kaci take over my turn which she was excited about. I still enjoyed myself but I had no idea that something as simple as bowling would be so hard. Then of course I worry about lymphedema, I was told not to carry grocery bags, my purse or anything heavy on that side and here I was throwing a 10lb bowling ball.
I have a lot of new friends since my diagnosis who have gone through the same things I have but unfortunately I have not met them in person. We are friends in the blogging world as well as Facebook and some I have talked to on the phone. I am grateful for each and every one of them as they have all helped me in some way. I can't imagine my life without them and at any time I know I can message them, call them, write on their blogs etc. and they will be there for me. There are so many amazing people out there. I will also be there for anybody and everybody at any time. I feel it is my duty to pay it forward. I hope that all of you reading this blog all over the world knows that if I can be of help in any way please just ask me.
I know my new friend Shauna and I will continue to be good friends. I also think it is so good for Kaci to have a friend who she can relate to as well. I believe there is a reason that this family moved into our area. It is amazing how much other people can give and provide strength to someone else. We all need to remember that everybody has trials, some might seem big and others quite small but we cannot judge how that person is reacting to them. To them it might be big. We need to continue to be there for our neighbors, friends, family and strangers. We need to listen to them and be there for them no matter what. Nothing is more important than serving. Even if you just smile and say hi to a stranger you might make their entire day.
You cannot ever truly understand the physical limitations as well as the emotional effect that breast cancer has on a person until you have gone through it yourself. For instance we went bowling on Sunday for Valentine's Day. I didn't think anything of it but it was so hard for me to move that arm and it was actually a little painful, my skin is still so tight on the right side where I had radiation. I decided to just let Kaci take over my turn which she was excited about. I still enjoyed myself but I had no idea that something as simple as bowling would be so hard. Then of course I worry about lymphedema, I was told not to carry grocery bags, my purse or anything heavy on that side and here I was throwing a 10lb bowling ball.
I have a lot of new friends since my diagnosis who have gone through the same things I have but unfortunately I have not met them in person. We are friends in the blogging world as well as Facebook and some I have talked to on the phone. I am grateful for each and every one of them as they have all helped me in some way. I can't imagine my life without them and at any time I know I can message them, call them, write on their blogs etc. and they will be there for me. There are so many amazing people out there. I will also be there for anybody and everybody at any time. I feel it is my duty to pay it forward. I hope that all of you reading this blog all over the world knows that if I can be of help in any way please just ask me.
I know my new friend Shauna and I will continue to be good friends. I also think it is so good for Kaci to have a friend who she can relate to as well. I believe there is a reason that this family moved into our area. It is amazing how much other people can give and provide strength to someone else. We all need to remember that everybody has trials, some might seem big and others quite small but we cannot judge how that person is reacting to them. To them it might be big. We need to continue to be there for our neighbors, friends, family and strangers. We need to listen to them and be there for them no matter what. Nothing is more important than serving. Even if you just smile and say hi to a stranger you might make their entire day.
MTHFR GENE mutation(not a cuss word), lab results and hot flashes
So I have been seeing an amazing OB/GYN. I went in for a 2 month followup on February 2nd to discuss my lab results in detail from last December. My cholesterol was extremely high at 283. My vitamin D levels were on the low end of normal and everything else was in check. I immediately started on a higher dose of Vitamin D and two different supplements per this doctor's recommendation. I started on Red Yeast Rice (Yeah, I have never heard of it before either). Anyway it is a natural statin that can help reduce cholesterol. I also started on another supplement called COQ10 (just Google it for more information). At this followup appointment we decided to retest everything as well as did the genetic test MTHFR. Dr. Knowles said that she has a 90% accuracy rate of guessing that a person probably has one of these mutations. She guessed me to possibly have this mutation due to breast cancer at an early age as well as high cholesterol for most of my life. This test is not covered by insurance and I will have to pay out of pocket for it but it should be less than $1000. It was important to me to find out if I had this mutation because there are supplements you can take to help with it.
Yesterday, I got the results in the mail and my total cholesterol is down 66 points in two months. I am beyond excited! My cholesterol has been high since I first had it tested in my early 20's. I will continue taking the Red Yeast Rice since it is natural and it appears to be helping my cholesterol come down. She said that statin's can cause brain fog and I already have enough of that since chemo, I really didn't want to add to that. Plus if I can lower my cholesterol the natural way then there is no need for a statin. My vitamin D levels came up a bit too but are still within the normal range and not even close to the verge of over dosing. We didn't know if taking 10,000ui a day might be too much but it appears to be what I need to take right now. It is important for me to keep my bones healthy and strong now that I am in menopause.
On top of that I have both of the two critical gene mutations. What this means is this can cause pulmonary embolisms, addictions, fibromyalgia, miscarriages, schizophrenia, severe depression, heart disease and cancer to name a few. There are a lot of health problems associated with these mutations. My doctor may be on to something, this could be the very reason I had breast cancer at an early age as well as high cholesterol. So now I am taking this information and I will supplement with a methyl form of B6, B12 and folate which will help my liver to flush out the toxins. I am hoping that when I go back in May my cholesterol has dropped even more and that I am within the normal range on all levels. I also hope that with the vitamin B supplements that I will have more energy as this can be part of the problem with this mutation also. These mutations rarely have any physical symptoms but just knowing that I am giving my body what it needs so that my liver can perform its function properly is worth the peace of mind. I still know however, that God is in control of my life and my destiny but knowing that I am striving to be healthy and doing this the holistic way makes me feel like I am doing all that I can.
I also started on Gabapentin back on December 2nd to see if it could help control my hot flashes. The major side effect of this drug is tiredness so you have to take it at night before bed. It is primarily used to treat seizures, but some women have success in treating their hot flashes as well. I feel like since I started on this medicine that my hot flashes were not as severe or intense. I also can go longer without having one. At night I am able to go about 2 to 2-1/2 hours in between hot flashes rather than at least one every hour so I am getting better quality of sleep. During the day is different because of my stress levels, excitement, etc. when I am awake. The littlest of things can trigger a hot flash. Usually if I am relaxed and don't have any distractions or physical activity I can go longer without having one. Anyway since I had also started on this drug at the same time as the Red Yeast Rice and COQ10. I didn't know if it was really helping or not. I did have some relief so I knew it was either this or the COQ10 or the combination of both. I ran out of the COQ10 in early January for about a week and I felt like my hot flashes were getting worse. I started back up on it and then I thought maybe it is the COQ10 that is helping my hot flashes and not the Gabapentin. Since the COQ10 is a natural supplement I didn't mind taking it. I hate taking any unnecessary medications so I decided to go off of the Gabapentin and see what happens. I went off it gradually for the first week of February and then went off completely the 2nd week. Towards the end of last week my hot flashes were back full force. Every hot flash I had produced sweat and they were very intense. A couple of days of that was all it took for me to start back up on the Gabapentin. While I don't like taking this drug because it makes it so hard for me to get out of bed in the morning it is worth it to me to not be such a sweaty mess during the day. I have very curly hair that I flat iron the heck out of each morning and if my hot flashes produce a lot of sweat then by the end of the day I have my curly hair old lady look. I hate that the hot flashes make my head, face and neck just drip with sweat. Since I have been on Gabapentin I might only have one of two hot flashes a day that produce sweat so most days I can go home with the same hair style that I created that morning. It isn't all about the hair as much as it is about being uncomfortable during each hot flash. I never new how debilitating they can be. I guess now I can say that the combination of COQ10 and Gabapentin are helping me quite a bit with my hot flashes. It is so nice to have a hot flash and while it is still uncomfortable it doesn't last as long and most of them do not produce sweat. I don't know how long they will stick around and I keep hoping that they will start to fade out but I don't think that will happen anytime soon since the Tamoxifen that I am on creates them as well as just plain being in menopause.
Yesterday, I got the results in the mail and my total cholesterol is down 66 points in two months. I am beyond excited! My cholesterol has been high since I first had it tested in my early 20's. I will continue taking the Red Yeast Rice since it is natural and it appears to be helping my cholesterol come down. She said that statin's can cause brain fog and I already have enough of that since chemo, I really didn't want to add to that. Plus if I can lower my cholesterol the natural way then there is no need for a statin. My vitamin D levels came up a bit too but are still within the normal range and not even close to the verge of over dosing. We didn't know if taking 10,000ui a day might be too much but it appears to be what I need to take right now. It is important for me to keep my bones healthy and strong now that I am in menopause.
On top of that I have both of the two critical gene mutations. What this means is this can cause pulmonary embolisms, addictions, fibromyalgia, miscarriages, schizophrenia, severe depression, heart disease and cancer to name a few. There are a lot of health problems associated with these mutations. My doctor may be on to something, this could be the very reason I had breast cancer at an early age as well as high cholesterol. So now I am taking this information and I will supplement with a methyl form of B6, B12 and folate which will help my liver to flush out the toxins. I am hoping that when I go back in May my cholesterol has dropped even more and that I am within the normal range on all levels. I also hope that with the vitamin B supplements that I will have more energy as this can be part of the problem with this mutation also. These mutations rarely have any physical symptoms but just knowing that I am giving my body what it needs so that my liver can perform its function properly is worth the peace of mind. I still know however, that God is in control of my life and my destiny but knowing that I am striving to be healthy and doing this the holistic way makes me feel like I am doing all that I can.
I also started on Gabapentin back on December 2nd to see if it could help control my hot flashes. The major side effect of this drug is tiredness so you have to take it at night before bed. It is primarily used to treat seizures, but some women have success in treating their hot flashes as well. I feel like since I started on this medicine that my hot flashes were not as severe or intense. I also can go longer without having one. At night I am able to go about 2 to 2-1/2 hours in between hot flashes rather than at least one every hour so I am getting better quality of sleep. During the day is different because of my stress levels, excitement, etc. when I am awake. The littlest of things can trigger a hot flash. Usually if I am relaxed and don't have any distractions or physical activity I can go longer without having one. Anyway since I had also started on this drug at the same time as the Red Yeast Rice and COQ10. I didn't know if it was really helping or not. I did have some relief so I knew it was either this or the COQ10 or the combination of both. I ran out of the COQ10 in early January for about a week and I felt like my hot flashes were getting worse. I started back up on it and then I thought maybe it is the COQ10 that is helping my hot flashes and not the Gabapentin. Since the COQ10 is a natural supplement I didn't mind taking it. I hate taking any unnecessary medications so I decided to go off of the Gabapentin and see what happens. I went off it gradually for the first week of February and then went off completely the 2nd week. Towards the end of last week my hot flashes were back full force. Every hot flash I had produced sweat and they were very intense. A couple of days of that was all it took for me to start back up on the Gabapentin. While I don't like taking this drug because it makes it so hard for me to get out of bed in the morning it is worth it to me to not be such a sweaty mess during the day. I have very curly hair that I flat iron the heck out of each morning and if my hot flashes produce a lot of sweat then by the end of the day I have my curly hair old lady look. I hate that the hot flashes make my head, face and neck just drip with sweat. Since I have been on Gabapentin I might only have one of two hot flashes a day that produce sweat so most days I can go home with the same hair style that I created that morning. It isn't all about the hair as much as it is about being uncomfortable during each hot flash. I never new how debilitating they can be. I guess now I can say that the combination of COQ10 and Gabapentin are helping me quite a bit with my hot flashes. It is so nice to have a hot flash and while it is still uncomfortable it doesn't last as long and most of them do not produce sweat. I don't know how long they will stick around and I keep hoping that they will start to fade out but I don't think that will happen anytime soon since the Tamoxifen that I am on creates them as well as just plain being in menopause.
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