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!


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