And now today

Time for me to focus on me.

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.

Stormy Night

I used to have a blog for my writing called Typewad. Hopefully I'll get it working again soon, but til then I'll post my little story here. It doesn't seem at first to be about cancer, but everything kind of is effected by the big C now, so you decide.

I am of the people who lived in the lands of great and dangerous winds. Only those who could survive a 70 mph wind were able to reproduce. My genetic code carries their experience.
Some of you are of the people who lived in the lands of mild and comforting winds, never having to be afraid that something as wonderful as a soft breeze might suddenly act like it is going to kill you.
So I understand, if it feels to you like my fears are unreasonable.

But I'm not stupid and I know that it's possible that the storm coming towards my house with 70 mph winds might hold together and arrive destructively. It HAS happened before. Just not right here where we live, but our neighbor had a giant tree knocked over in a storm like this.

I ask myself if our house can withstand 70 mph winds, and wonder what kind of damage is possible. I know it's reasonable to be scared and might be dangerous, but we just have to hope it doesn't hit us. I also know it's okay to take reasonable precautions in dangerous situations.


So I take my blanket and sit in the kitchen away from the big windows facing the direction the winds will come from. And I hope they don't come cause it would make a mess. And I know this because when I was 5 a bad storm blew out the picture glass window of our living room. And I can still see it in slow motion. And I remember before that being in the yard with my Mom trying to bring the laundry in before the rain hit. And the wind lifted her 1962 dress up over her head like I'd never seen. And I didn't understand how we would be safe in the basement because I thought a tornado was like a dragon and just come down the stairs. I waited, sure it would kill me. Til my now dead brother David looked through the little window and said our roof just blew off, and we didn't go back up til the sirens stopped. Dragon warning over, I thought.

A lot of life is that way. We have to trust that things will be okay because we can't live in bunkers even though it would be safer, but that's not really living. I also know I'm capable of living with fear, even though it is uncomfortable.

So, I will stay up late to check the radar instead of going to sleep now, because I am of the people that get in the closet when a 70mph wind hits a trailer. I am of the people of the land of dangerous winds.

But I do love how when the storm is passed, and the fear is gone, the world feels so intensely real and beautiful. The dangers of life make it more meaningful. I embrace that truth with gratitude, tonight.

Fear fuels beauty and truth if we let it.

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Choosing Life

When I learned last Wednesday that the CT scan showed probable cancer in my liver, I made the mistake of going online and looking up mortality rates. Bad idea.

Sure, many people with stage four breast cancer will die within the first two years, but I am most unlikely to be one of them. And it is true that not all that many years ago, this would be time to start planning my funeral, but that is no longer true.
Today John and I met with my oncologist, Dr Wilks, and she assures me that she expects the chemo to shrink these tumors to nothing. And we'll know it's working because we'll be watching with frequent CT scans. I'm hoping for a nice 10 year remission, like many other women in my situation have achieved. Maybe even longer, God willing.

I have a terminal illness, but it will take a long time to finish me off. I am strong and healthy and much loved. And I will fight this disease with fierce determination.

So, yes, my liver biopsy shows that the 2 masses are metastasized invasive lobular cancer. That means the cells from my main tumor in the breast have travelled to the liver and grown 2 tumors that are each just under 3cm. My bone scan was clear and my lungs and other organs look clear, but since the cancer cells have escaped the original site and travelled throughout my body, it's probable that there are other places where the cancer has taken hold, but the tumors are too small to see. That is why I will be treated systemically with Paclitaxel, which will kill any fast growing cells in my body.

My first chemo treatment will be this Friday, April 26. After that I'll have them on Wednesdays. Three weeks on then one week off. They will continue until the tumors are gone. If this drug does not work for me, there are many others to try.

I really got upset last week, feeling that I was on death's door. I was walking around like in the book "Goodnight Moon", saying goodbye to everything I love. It made me feel like I was already dead.

But I'm not. And I'm not likely to be any time soon.

For me this is an exercise in trusting God and letting go.
From what I've heard that works great when tried.
I am trying!

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Sometmes it's hard to know . . .

Not an easy day.The CT scan shows 2 masses in the liver, each almost 3 cm large. Almost certainy metastisized breast cancer.

I went from stage 2 to stage 4 quick as you please.

But of course nothing is changed, it was always there we just did not know it. Now my chemo will begin a week later, and probably go longer. I will be infused once a week for 3 weeks then have one off. They'll test me plenty to make sure it's working, but I'll ever be completly cured, altho I might go into remision for many years.

That's okay, we're all terminal, I'll just carry a deeper awareness closer to the surface.

We're hoping to get a PET scan and Liver biopsy. Will let you know how it works out.

This is hard news to accept and internalize, but I maintain my belief that the rest of my life will hold much more joy than pain, more love than fear, and more blessings than imaginable.

Love you all and thanks for the prayers and support.

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I wanna know what condition my condition is in

I am struggling today with letting go. Always a difficult lesson for me. My chemo is supposed to start Wed 4/17 and I am taking part in a research study. My oncologist left a voice message on my cell phone yesterday saying that it's critical that she see me Monday morning because of something in my recent reports that might effect my participation in the study.

Don't you just love that kind of thing?

I'm thinking, what reports did she not have last time we talked? There was a CT scan with barium & all of the major organs, liver, kidneys - abdominal stuff. There was also a blood test for liver function. I don't think it's the heart echo-cardiogram cause she had that. Aaaaaarrrrggghhhhhh!!!!!!!

She even called again this morning and left a message. That's what I get for turning my cell phone ringer off and forgetting to turn it back on.

Last time this happened I got worried cause they cancelled my CT scan and gave me a reason that made no sense. Turned out it was just denied by medicaid, and they got it funded thru the study.

This also is probably nothing, but it's a very fishy scary nothing, and I don't like it at all.

Poop on doctors! That's what the little girl in me says. We should run away to Mexico and live on the beach. She doesn't understand that I have to take the disease with me in my body.

I know everything will turn out fine. Really.

So Monday I see my oncologist at 9am (and hopefully let out a big sigh of relief and feel silly for worrying), then I see my surgeon, Dr Holliman at 1:45 prior to having my port installed, and my plastic surgeon, Dr Fearmonti at 3:30. Tuesday I have surgery to install said port, and Wed I go in for chemo at 8:45.

After that we see how I do and I go back in a week to check what condition my condition is in. Then chemo again on May 1, and every 3 weeks til July 24.

I feel great except for my through the roof anxiety level over having to face and accept the unknown. Will be happy when I can once again fool myself into thinking I have lots of control over my life. Til then I just have to have faith and trust.

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Onward we go

I saw my surgeon yesterday and got my pathology report. He says I'm healing wonderfully and will recover comletely. The pathology report shows that the tumor in the left breast (invasive labular carcinoma) was larger than hoped at 2.3 cm, so I will probably have chemo. Monday morning I see my oncologist, Dr Wilks to discuss where we go from here.

The good news is they took 2 lymph nodes from each side and they are clean. They also got clean margins on the tumor. The patholgy confirmed LCIS in both breasts and a very small ammount (.5 cm) of DCIS in the right breast.

When I read that it felt like a bullet shot past my head. DCIS is much more aggressive and dangerous than LCIS. Having the double mastectomy was absolutely the right decision.

Today I saw my plastic surgeon and she removed the last of my drains (yay). She inflated my temporary implants a little more. I'm super grateful to have John go with me to all these appointments and generally take wonderful care of me.

And thanks to all of you for your love and support.

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