Thursday, April 12, 2018

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.




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Thursday, April 5, 2018

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!