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!!!
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