Wild ride to a good place

Right now I'm in such a good place. And I have been wanting to share it with you all throughout, but everything kept changing! Only now do I have a sense of God's will moving through what seemed like chaos. Only now do I know enough to tell the tale.

Of course it really begins in 2006 when I have a benign lump removed and the biopsy of surrounding tissue shows LCIS (Lobular Carcinoma in Situ). I find my current oncologist and she puts me on Tamoxifin for almost five years and watches carefully with six month mammograms. Nothing shows up.

In fall of 2012 I find another lump in the same breast (it only shows on sonogram) and have it biopsied on December 18th. It is infiltrating lobular carinoma. I am approved for funding through Texas Medicaid for women with Breast and Ovarian Cancer, but they only pay for one scan. The bone scan is clear.

I have a double mastectomy on March 6, 2013. The lobular tumor in the left breast is 2.3 x 1.3 x 0.9 cm, HR&PR+, HER2-. But I'm glad I had both removed because the right has LCIS and Ductal. I plan on having reconstruction with DIEP so expanders are put in during surgery.

I have a baseline chest, abdomen & pelvis CT scan on April 11 before starting chemo, but when I go for my first treatment we find out that I have 2 liver tumors, 3.4 x 2.8 and 3.1 x 2.9 cm.

What a shock. I went from stage II to stage IV just like that.

I start on chemo the next week, a clinical trial with Paclitaxel and Avastin (Bevacizumab) given once a week for three weeks in a row then one week off.

Every scan after that shows reduction in tumor size. In June they measure 1.6 from 2.8, and 1.5 from 2.8. August they are 1.2 from 1.6, and 1.2 from 1.5. September they are 8 mm from 1.2 cm, and 1 from 1.2 cm. Until November in which they are too small to measure (under 1 cm each) and the comments say "STABLE SMALL HEPATIC LESIONS"  which means I am stable.

I am given the option of taking a chemo break, but decide against it because the treatment is working so well I want to stay on it as long as possible. I know if I stop the clinical trial I cannot get back in. By the time of my next scan on January 3, 2014 I have had 10 rounds of chemo (4 weeks each) with a total of 28 infusions.

But this scan is different. It shows progression. One tumor is the same, the 8mm is now 2.4 x 1.8, and they see a new 8mm "possible" tumor. I am distraught, my family is terribly upset, it is just awful news. I have to leave the clinical trial right away so no more treatment, and we take a little time to think about the next move.

My Onc thinks I might benefit from interventional radiology and has me meet with the team at a local hospital. They keep  saying they don't have all my scans, just June and January. This goes on for about a month. Twice we hand carried the CDs to them, but when I go for a biopsy 2/11 they still can't find them. They look again, find and read. The IR doc comes back in, shows us the scans from April, November and January and explains that he sees no progression! He says I'm doing great and the tumors are too small for them to treat!! We go ahead and do the biopsy under concious sedation, and again he says he does not see progression with the sonogram.

This is when I experience a small personal miracle.

As you can imagine, my fear and anxiety are through the roof.  Taking a chemo break for 2 months in the face of progression is NOT the right thing to do. I can't stop imagining that the cancer (which had never grown so fast as to double in size before) is taking over my body while we are dithering about. I knew we could not do much for the first 4 weeks because the Avastin had to wear off, but every day after that was TORTURE! I became a blithering idiot. Could not think clearly, or make decisions, or remember much.

Anyway I was at a peak of discomfort when we saw the IR doc on 2/11, and it didn't happen right away, but I believed him. And in that moment of belief I was completely freed from all fear and anxiety. Free!! 

So I thought about it, and what hit me is that there was nothing different in my body, or with the cancer. I had conciously chosen to believe good news, and that is what released me from my torture. So the take away for me is that maybe I can practice this, having experienced it once, and get better at moving more quickly to acceptance and peace. This realization has helped me every day since it happened, and the anxiety and fear remain at bay.

When I was told that the hospital somehow destroyed my sample, it did not bother me at all. Everything is more manageable when we have active faith. They did  see live cancer cells under the microscope before the samples were trashed.

Meanwhile, my oncologist believes in her radiologist's report and proceeds to find a new treatment for me. My clinical trial nurse, has a sample of my original tumor sent for genetic typing from FoundationOne. The report shows that the cancer is mainly driven by a mutation of PIK3CA, and there is already an FDA approved drug for the mTor pathway (of which this is a part). So I started Afinitor + Aromisin February 28th.

Then I had a scan March 3, and when I saw my Onc March 5th she said that the January CT report was WRONG! I never had progression. I have been stable for FOUR MONTHS, even though the last two included NO treatment!!!! If not for the biopsy, I would be declared NED!

I'm so overwhelmed with gratitude, right now. It has been a long, twisted, bumpy, minefield of a road. But all in all I'm happy where I am. Very happy, and grateful.