No cancer meds for me!

So... I went back on Arimidex... I was on it for a few months and then BOOM! I put on 12 pounds. Then a week or two later I started holding a lot of water in my ankles and legs. Well, crap. So, I called my oncologists office. After a lot of nonsense I went in to see her. We talked about it and talked about it. What was going on? Well... 

I had been having so much joint pain that it was difficult to get to a standing position from sitting. Especially at home where my furniture is lower to the ground. Brad had to help me up a LOT! Walking was difficult. It hurt every day to walk. 

I felt lousy. Every day. I had not felt good since I started chemotherapy and bluntly I was tired of it. 

I was fatigued. Beyond fatigued. It was all I could do to go to work. I would go to work and then come home and I was done. I had to push myself to do anything else. 

I started noticing my mood slipping. It was starting to go downhill again. I do NOT want to go back to where I was last fall. 

Then the weight gain and edema. 

But maybe my diet was not right and that's why the weight gain and possibly the edema. Well... during the time I was taking this medication, I first went on a 1500 cal/ day diet. Plus I increased my time in the gym. yet I gained weight. Not muscle. Fat. I know my body and know the difference. So, as I gained weight, I changed my diet to low carb. Still the weight gain. When the edema started, that was the last straw. 

So, I met with my doctor. We talked about all my options, but prior to meeting with her, Brad and I talked about it. What was the right answer. We decided no more medication. It was too much. I even said I would go thru chemo again instead of doing this. It was too much. And if I thought about taking that pill anymore, my mind couldn't handle it. I would cry. 

It felt like the right decision. I knew that if I stopped it would increase my risk of recurrence. But I didn't care. 

Well, when we got to the doctor, it wasn't as easy as I had in my head it was going to be. She was very nice about everything. She did, however, explain to me very clearly that if I chose to stop the medicine,  not only does my risk of recurrence increase, but if the cancer DOES return, chances of them being able to cure it is very slim. Her words were "we probably won't be able to cure it next time". I admit. I balked a little. Its really hard to hear those words. To hear that if you make the choice that you feel is best for you overall, you may die. But... I'm ready to die. Not that I'm trying to, but I know where I'm going and I'm comfortable with that. However, the human selfish part of me doesn't want to. I want to stay here and harass my husband. I want to see my daughter become a mother. I want to watch my two grandsons grow up. So, selfishly, I'm not ready because I have things I want to do. Spirituall, I AM ready. 
In the end... I stopped the medication. 

That was about a month and half ago. How am I now? Well... I do not have NEARLY the pain I had. I feel better and much less pain. I'm still tired, but not nearly as fatigued as I was before. I come home from work and some days I take a nap. Some days I work outside or around the house. I've lost almost 10 pounds. Its been a slow gradual loss. I don't have the edema I had. (that went away almost immediately!) My mood is coming back. It's slow, but it's returning. 

I am glad I stopped the medication. Life is meant to be lived. It's not meant to just exist in. I feel as though I have a long way to go still. But I also feel I am going to get there. A couple months ago I'm not sure I could have said that. I am still having days where I wonder. There are still a lot of days that I wonder what my new normal is going to be. But I've wondered that for a couple years now. I still am not sure I will ever run again. But I feel as though I may be able to try now. 

This is all for right now. I will write more later. 

Love, peace and blessings to you. 

another year post surgery

Another year after losing my breasts to cancer. A lot has happened and changed and remained the same. I cannot believe it has been 2 years!

I've changed oncologists. Great decision! I changed from tamoxifen to arimidex.

I still have opted not to have reconstructive surgery.

I had QUITE an emotional battle. I think in part because of PTSD from the cancer, because I had to go off of Wellbutrin for awhile and a side effect of Tamoxifen is mood changes.

The fight for my health and to beat cancer is still just as real today as it was 2 years ago. The sadness is still there over the loss of my breasts. I am still uncomfortable around people if I don't have my prosthetics on... however, that varies...

Unfortunately for me, my cancer was hormone driven. I have to take medication for 10 years total (9 to go) to prevent recurrence of the cancer. In speaking to my oncologist, if I don't take the medication, I have a 40% (or higher) risk of the cancer returning. She calculated this risk by using the size (total) of my tumors and the treatment I received (surgery, chemo). She then stated if I DO take the medication, I would have approximately a 10% chance of the cancer returning. This has become quite a challenge for me as well. I've had to switch meds, find out if I was truly post menopausal (which I am) and blah blah blah blah.

My gosh, this battle never ends! You don't get to quit fighting! I have considered, more than once, stopping the medication to prevent cancer returning. Why would I do that? The side effects. They are not fun! Since diagnosed with cancer 2 years ago, I have put on more than 40 pounds! I have to deal with edema now. Mood swings that put me back to my teenage years. I start to questions quality of life vs quantity of life. I gave my dad that talk last summer.

It is just an upheaval.

I used to say all the time when I was going thru chemo, I want my life back. I was told more than once "You'll get it back. It will be ok". But that's a lie. You don't get it back. Things are never "ok" again. You have two lives now... as one lady put it I have B.C. and A.D. Before Cancer and After Diagnosis. This is very true and accurate. I had issues and irritations in life BC. But AD... wow! nothing like it. My outlook has changed. I can see how fragile things are. I'm not sure you can see this unless you face a life threatening illness or situation. I remember laying in my bed praying I would die, but knowing I wasn't going to. I would listen to a song (Beauty from Pain by Superchick) and cry and cry. (side note: my daughter did a beautiful dance to this for me) I just thought over and over... I want my life back.

The life before doesn't come back. Life is now very different. I look at things different and if there is something I want to do, I do it. Like a painting or a class. Yes, there are other things I could be doing, but I opt to do the fun things. Life is too short to worry about if the carpet has been vacuumed or not. If I die, my family will do it! ;) I have a different mind-set. I don't know that I can exactly explain it. I feel sad a lot. Sad because I lost a year of my life and some pretty cool things happened during that year. The one thing that was the most awesome was my daughter got married. I am still so hurt by that. Why? Because I only remember snippets of the day. I didn't get to talk to people like I would have liked to. I didn't get to dance or do those things like I would have enjoyed. I didn't get to do a lot of the mother of the bride things because I was too sick. I have been carrying on about her wedding a lot lately I think because it has really hit me how much I missed.

My grandsons grew and grew during that time. They are so precious.

I think Brad and I aged tremendously during that year.

I think I am quieter now. Maybe not all the time, but definitely more of the time.

Our minister talked this past Sunday about being distant from God. I think I am. I feel pretty distant. But Sara, you shouldn't be distant! God pulled you thru some pretty horrible things! Yes He did! I didn't say I don't believe in Him! I just said I feel distant. Theres a huge difference. There are just times that I'm not sure how close we are anymore and I don't feel the relationship I once had. It takes work on my part, I know that, but you have no idea how tired I am. That may sound like a cop out, but I am so so tired. Perhaps this is just a time in my life where God is more silent.

and tired... man am I tired. The thought of doing something after work is just too much. It's exhausting. Life is exhausting. I go to work, come home and am ready for bed. Seriously. I could probably go to bed at like 6 or 6:30 everyday. Then sleep til 5 the next day and still not want to get out of bed! Some may say "that's how I feel every day too!" Well, then I am sorry for you because trust me, that's no kind of life! Because this is not fun! Going to bed earlier than my Grandma did! But I hear it will get better.

Last year I started a job. I started working 4 days a week, 8 hour days. It was awesome. Just this week that has changed. I am now working 5 days a week, 8 hour days! So I am officially full time! That is a HUGE accomplishment!

I know I shouldn't think about it, but every day, I think about cancer. I never really ever gave cancer a second thought before. Maybe I think of it because I have to "put on" my breasts. Maybe because I have to take a medication daily to prevent a recurrence. Maybe because it's only been two years. I don't know. I used to think about it every minute and hour of the day. Not anymore. But I still think about it daily. I am told that it gets better. I hope so. I'm an obsessive person. I am likely to just think and think and think about things.

I know everyone says, I never thought cancer would happen to me. But I really never did. I always thought a heart attack would kill me. It still could. But now I know there are so many things that could do it. I really never thought about anything else.

I have always been a person to talk about death and dying. I always joke with Brad about who is going to die first. He says when I was diagnosed with cancer and going thru my initial treatment, I never talked about it. I joke about it again now. He says that's how he knows I'm ok.

So... two years in. What have I learned?

• I've learned who is there for you and who isn't.
• I've learned more about lip service and actual service. Now I try to remember that when something happens to someone. When I say to someone, let me know if you need anything, I truly mean it. I don't want it to be lip service.
• I've learned the value of love. True self sacrificing love. I've seen it from friends and family. I now try to do that. I'm not sure I really have ever done that before. I'm still not sure that I do that now.
•  I've learned what selfishness is. I learned that I exhibit a lot of selfishness. I am now trying to learn not to be that way.
• I've learned that sometimes people don't get it. And that's not your responsibility. They just don't get it and you can't help that. But you need to learn not to be mad at them for not understanding. It's usually not their fault.
• I've learned that when people back away, it's not because of you. It's because of them. It's really not you.
• I've recently learned that you need to forgive people for not being what you want them to be or what you need them to be. Putting that into practice is a totally different story. It's very hard and I'm still working on that.
• I always knew and know even more now that people watch you. They watch you when you're happy but they watch you even closer when you suffer. They want to see how you will react. It shows your character and your beliefs/ faith. You can be a good example and happy witness or you can be a poor example and very disgruntled. The choice is yours. But remember, they are watching.
• I also learned that you will be hurt. Especially when you are down. It may come from someone you have loved for a long long time. It may come from someone you have only known a few years or months. But it comes. It doesn't always, but USUALLY comes from someone you really trusted. That's why it hurts. When you trust someone, you believe that they will have your best interests at heart. Sometimes they do. Sometimes they don't. But remember, it's their problem. It's not yours. Again, you need to learn to forgive them.
• Forgiving others is not always because they have asked for forgiveness. They may not even know that they have caused you pain. But forgiveness is for yourself. It's so that you can let go of the pain. You can wash it away. Jesus forgave you. Are you better than him?

So.... this is what I know two years in. I hate to tell you that it's still a daily battle, but it's still a daily battle. I never thought I'd be in this fight, yet, here I am. I don't know how long the fight will continue, but I know in the end, no matter how the outcome appears, I will win.

•  

new oncologist

So, I just realized I never went on from when I stopped the tamoxifen. I'm sorry... There is still so much to tell!

So where I left off, Brad took me away for the weekend. That weekend, I had a massage, and I saw the sun, and slept and slept. On the way home, he commented that I was starting to sing along with the Muzak. Something I hadn't done for months! There was a small change for the better.

I moved forward and contacted my Employee Assistance Program (EAP) and found a therapist that could deal with chronic illness and PTSD. I got scheduled there. I also got scheduled with my family doc so that I could get back on the Wellbutrin.

I saw the therapist, I started back on Wellbutrin, but something just didn't feel right still... so, I decided to try to get into an oncologist at my workplace. I had my family doctor send a referral for a 'second opinion' and then I called. I got set up for an appointment.

We went to the first appointment and WOW! Night and DAY! It was crazy! First off, I found out that Tamoxifen can give false readings of hormones and you can look like you are post menopausal when you aren't. Then when I complained of being dizzy and falling recently, that was taken seriously. My lymphedema was taken seriously and a serious referral was made. I felt heard and relieved. So what happened?

Well, an MRI of my brain was ordered to evaluate the dizziness and falls. I also went to physical therapy for the lymphedema and dizziness. The physical therapy, taught me exercises to help the dizziness. It really did help. Then I was taught exercises for the lymphedema and they wrapped my arm. Like from hand to shoulder in 4 ace wraps with padding underneath. I could hardly move. I had to wear that 23 hours a day. It was uncomfortable but I did it. By doing this, my arm shrunk! It really shrunk. After it shrunk to a certain level, I was measured for a lymphedema sleeve.

The MRI of my brain... well that was fun! They found lesions on my brain and referred me to a neurologist. I walked around for a couple weeks thinking I had MS. Well, I don't have MS (thank you God!) After a VERY thourough exam, it was found that these lesions were on my brain from a bad concussion I had from a car accident in May of 2006. Then, the chemotherapy aggravated these lesions. Therefore, it caused me to have increased symptoms. I also found out that all the pain I have in my neck and shoulders is from the 2006 car accident as well! OH MY GOSH! So finally some answers!

So I stayed off the tamoxifen and then had more labs drawn. I was NOT post menopausal. I was close, but not there... They took me off the arimidex. I wasn't sure what the next move would be.

At my next follow up I found out there were more options that meant I would NOT have to give up my Wellbutrin. They wanted to draw more labs and check my hormone levels again just to be sure if I was or was not post menopausal. It would mean a different approach.

Labs are drawn and son of a gun, I am TRULY post menopausal! So, back on to arimidex I go. I asked my risks, because at this point, I'm wondering do I do this or just take my chances. If I don't do the meds, my risk of recurrence is about 40%. If I DO the meds, my risk of recurrence is less than 10%. So... I'm gonna do the meds.

So what happened when I changed oncologists? I found someone who would listen and take my issues seriously. I also found people with a bit more knowledge. the lesson here is it is never too late for a second opinion!

tamoxifen to arimidex

How did I get to a new oncologist and what was the deal with the bad of Tamoxifen? I will attempt to address that here... 

So, I went in September for my check up with my oncologist. Leading up to that time, I had sunken to an all time low. Lower than I had ever been in my life. So low. I didn't care if I lived or died. I felt completely dead inside. There was one thing I could trace it all to. Tamoxifen. 

When I went on Tamoxifen, I had to stop Wellbutrin. An antidepressant (an SSRI to be exact). SSRI's reduce the efficacy of Tamoxifen. I followed blindly. Like a lemming. Now, keep in mind, what happened to me does NOT happen to all people. I'm just special. :) 

My doctor that handles my antidepressants adjusted my medication to make up for the loss of the SSRI. That was fine. I was going to be ok. I just knew it. 

Life went on. I went on vacation. I got a new job. I loved my new job. I lost some weight. Summer came. I auditioned for a musical and got in. Went to rehearsals. All the while I declined. My fatigue did not improve. My mental state did not improve. In fact, they got worse. 

I never really talked about it to anyone. I was cancer free! Wasn't life great? My surgeon told me that PTSD was normal. So, I went to my doctor and was placed on anti-anxiety medication. This is normal. I just needed more help. I had PTSD. Life is going on. 

While life went on, I continued to decline. I got to a point that I would come home from work and just sit and stare. Seriously. That's what I did. I would go to rehearsal or see my dad in the nursing home and sit and stare at the TV or whatever. In that time, my dad died. I declined further. My dog died. Further down. 

Life was going to improve. We were going to go on vacation to Myrtle Beach. The BEACH! The ocean! I love the ocean. The Sun... my grandson was going to start kindergarten. Life was good! I still declined... 

I started crying every day. But not like crying crying. Just having tears roll down my face. Brad told me he had serious concerns about me. I told him (finally) I would do whatever he wanted. I just didn't care. I would do it, but I didn't think it would matter. 

The show we were in went on. We performed. I was miserable. I was dead inside. 

I went to my oncology appointment. A Week prior, I had labs drawn. The labs showed I was post menopausal. Of course at the lab visit, the office staff told me I was wrong about the date of my visit. It seems they saw that there were two appointments scheduled and took it upon themselves to cancel one. I thought I had done that when I scheduled the second appointment. They screwed it up. Blamed me and I cried. and cried. and cried. I saw the oncologist. I had written out a ton of questions. Brad had to ask them because all I could do was cry. Just sat there with tears rolling down my face.  I was told that I needed to go to therapy. I said I wanted to go off the tamoxifen so that I could get back on the wellbutrin. I was asked why I went off the wellbutrin. Well, because you told me to. I need to get back on it. I was told that there may be some new studies that show you can take SSRI's while on Tamoxifen. (since when? what?). I just needed therapy and a positive attitude. You're fine. So, my oncologist VERY reluctantly agreed to let me go off tamoxifen and start arimidex. (which i was previously told I could do if my labs showed i was post menopausal). 

I left that day and cried and cried and cried. But I was STOPPING the Tamoxifen. End of story. and that weekend... my husband took me away. and that was when I started to breathe again. 

Cancerversary

Well... I hit my second Cancerversary. It's been two years  since I heard the words "you have cancer". Oddly, it was two years ago today that I posted on Facebook that I had cancer. I told my family and close friends first. Then I told my co-workers... then after some dust settled and I had seen the surgeon, I told the world.  

That's funny. A Funny statement. The dust settled. The dust hasn't settled. Not really. It's been two years and for two years I've been fighting. The fight hasn't ended. Two years in and I wonder if it ever will. 

So, what has happened in this past year? So much! 

I went on Tamoxifen after I finished chemotherapy. I had to because my cancer was estrogen and progesterone driven. Because of that, I am "required" to take antihormonal medications (a type of oral "chemo"). So, I took the Tamoxifen. It caused me a TON of fluid retention. I caused me to go into depression I hadn't known since my mom and grandma died and to go further into depression that even that. (partly because I couldn't take the one antidepressant that helped me because it reduced the effeciacy of the Tamoxifen). It caused me to want to die. It caused my heart to feel nothing but death. But, I was reducing the chance of recurrance. Not a fair exchange..... 

I also got a new job. The job I had when I was diagnosed did not hold onto my position. They held my job for me MUCH longer than legally required by the federal government. They decided, AFTER, I was released to return to work (only part time) that they could no longer hold my position for me. So... I was jobless. So, I looked and waited upon the Lord. I listened to Him and waited... and waited... and waited... What seemed like an eternity to me, was not. I started my current (and I hope my LAST) job on March 20, 2017. I hope this is my last job for many many reasons. :) 

I lost some weight. Not nearly enough, but some. I lost the steroid face! That was AWESOME!

I got new boobs! No, I didn't have reconstructive surgery. But, because I got a new job, I had new insurance. So, I was eligible to get new prosthetic breasts! These are so much better than the old ones and a bit bigger and even more realistic! I also got swim boobs! So, this week, Rebekah and I are going to look at a mastectomy shop for a swim suit top that will hold my swim boobs! 

I also changed oncologists! Such a great thing for me. I now see Dr Williams at The James Comprehensive Cancer Center at The Ohio State University. Such a great decision. Wish I had done it so much sooner. 

So... I went off the Tamoxifen. That in itself is a story. ( I will post a blog entry on that, hopefully later this week). Thought I was post menopausal. Found out I wasn't. Then I found out a month or so ago, that I finally truthfully am! 
I am now on Arimidex. It blocks the hormones too, but doesn't shut down my ovaries since they shut down on their own. 

I have survived another year. I wish I could say I have done more than survive, but that's not factual. I've not. I've survived. I know that is an accomplishment, but I wish I had more. But don't we all sometimes? This has been a year of learning. Not one I would wish on anyone... But It's been another year. 
Another year of being with my husband. Another year of watching my kids. Another year of loving on my grandkids. Another year of learning. Another year of meeting new people. Meeting new friends. Another year of seeing where God will take me. Another year... That's a gift. Not everyone gets another year. 

Thank you for another year.