And it turns on a dime

I typed this late on Tuesday night/Wednesday morning….

Are you sitting down. I hope so. Just about eight hours ago I was told I have brain mets, it has spread to my brain. NED was supposed to be getting closer not moving further away. I’m typing this now to document how I feel. Mostly I’m terrified. I look at my kids and want to cry. I’m thinking about all that I need to do and then alternating it with – hey, there is treatment, this isn’t the end. But I’m scared.

A few days ago, Friday or Saturday, I felt like my prescription sunglasses weren’t quite right. It has been two years since my last eye exam and these sunglasses are at least 5 years old so I’ll go to the eye doctor. On Monday I realize it is worse. That’s strange. Call Monday, the doc I went to doesn’t take our insurance. Tuesday morning I am seeing double, if I close one eye everything is fine so the pictures aren’t lining up. Find a doc who can take me and think, oh, I should call my oncologist.

She sends me for a brain mri and they read it immediately. The oncologist on call from my doctor’s group gets on the phone and says there ‘are multiple spots in your brain that appear to be breast cancer’. I ask how many, she tells me about twenty.This isn’t happening. I have two beautiful children I need to raise. This cannot be happening. It can’t. What do I do? How do I do it? I mean I have to do whatever it is I have to do but I thought things were looking up. All the other stuff was basically stable – that was just 10 days ago. This doesn’t fit. I’m tackling it, I’m trying to do the right things. I’m eating pretty well – okay I had sugar last week but I’m doing pretty well. I’m taking the Chinese herbs, I’m trying to work out the mental stuff. HOW THE HELL DID THIS HAPPEN!

Mom gave me a ride and I’m in no position to go home yet after that conversation. I’ll see the kids and fall apart, go to Mom’s. Call husband, sister, stepmom, and get my prescription for a steriod filled on the way. Daddy comes over, tell him and the three of us alternately talk and cry and talk and get mad and talk and cry and so on. Come home to help put my kids to bed. Manage to sleep for a couple hours. Woke up and found Heather, Sara, Karie, Chris and Julie on Facebook. Jules has had brain mets since ’08. Chris has had stage iv bc for eight years.

It is now almost 3am. I’m going to try to sleep but I don’t see it happening. I’ll call my onc first thing in the morning and make an appointment. They will likely recommend whole brain radiation which can have some yucky side effects but I will keep on fighting so if that is the route I need to go. That’s what I’ll do.

I’ve been in touch with Julie and Leonard about alternative stuff and I’ll talk to Eleanor (Blog = Rolling on the Edge of Life) who has almost my exact diagnosis and tomorrow we get up and fight some more.

I actually got mad for a little while tonight. I’m calm right now. I need to get my options together and figure out a plan. Quickly. This one eyed thing doesn’t work for me.

My friends have gotten me through the night. Things will look better in the morning. They always do.

FOLLOW UP
I went to the radiation oncologist on Wednesday and there are lots of little spots throughout and it is effecting my vision so they wanted to start something quickly. I am doing whole brain radiation for 15-20 treatments. Have done two as of the end of the day Thursday. Will talk to the kids on Saturday….

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My spin on this

A few things just so you get where I am coming from and I will update this list as things come up.

I don’t spell it correctly and I don’t capitalize it unless it is absolutely necessary, I won’t make it that important.

I don’t ‘have’ it and it isn’t ‘my’. I have been diagnosed with kansir. Have and my/mine indicates ownership. I don’t own it, I’m not keeping it.

I don’t see it as a gift. A gift indicates you might give it away. Maybe to a terrorist dictator but otherwise I don’t KNOW anyone I’d give this to.

I don’t go to a regular support group. I have a group of friends/warriors/survivors/thrivers that I can call upon as needed and who I talk to often, I am always adding to that group.

I am always prepared to talk to someone newly diagnosed and I am fine with you sharing my story. I will always find time to talk about ibc with someone. People need to know about it.

I do alternative and complementary treatments. Chinese herbs, supplements, juicing, iv vitamin C, detox, etc. and will do more as the situation warrants. No insurance does not usually cover that.

I do energy healing work (Reiki, Body Talk, etc). Insurance does not generally cover that either.

I was diagnosed at stage iv, meaning it had spread to distant organs, so I will not be considered ‘cured’ or be ‘finished’ with treatment. I may not always be on chemo but I’ll always be on some kind of treatment to keep it under control.

I don’t necessarily want this to run my life but is does play a big role in who I am now. I have to fight, I have to win and it kind of is all consuming at this stage. Earlier stage might be different but this is part of who I am every day. I am sorry if it seems to always be there but the fact of the matter is – well, it is.

I need my friends to promise to help take care of my children if this thing gets me.

Yes, I will let you cook, babysit, drive, clean and anything else you are interested in helping with.

I am a Christian and I pray and talk to God all the time. I may not always be as reverent as you like but I do believe God has a sense of humor too. Look around: wondrous, simple, complicated, amazing, beautiful, terrible, unexplainable, tragic, awesome, miraculous, and yes sometimes funny.

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Scan – March 2011

So, I went to those fabulous conferences, got to hang out in Florida for a few days, came home to a sick child and then… got to have scans. I was scared. I hadn’t been on ‘toxic’ chemo since Christmas. I have been on treatment but not chemo, which is scary when it is still there. Get scans Thursday and then do the waiting game. I’m better at it than I used to be, I understand that if I am getting results on Monday it doesn’t matter whether I get the scans on Thursday or five minutes before I see my doctor, it won’t change what they say. I get scared and nervous and worried and all of that; anyway.

Monday morning, drop the kids off, try to get some food into my nervous stomach and head off to the doctor. We talk briefly about my conferences and my trip. I tell her about getting started with the Chinese herbalist and continuing on the vitamin C and the doctor from Duke who talked about ibc being ‘very treatable’. Dr. B says, well obviously it is, look how well you are doing and delivers the news that basically, it has stayed stable since January. YES!!!

The 4mm spot in my lung that they were wanting to watch is gone. Good.
There is a spot in my liver that is almost 2 cm and is suspicious as a spot of new growth but the rest of the liver mets stayed essentially the same! I stay off chemo another six weeks and then have another scan so we can check that spot. This is good.

When this scan was done I had only had the iv vitamin C twice and had not yet started on the Chinese herbs. I am planning on the next scans being better even. Let’s shoot for no evidence of disease shall we.

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Two Awesome Conferences, seeing relatives and friends and then back to real life… part 2

Sarasota
So I had just lightened my hair and drove across Florida. It was a little cooler and cloudy that day so a good day for travel. Went to see my Aunt in Sarasota, we hadn’t had a visit that was just the two of us in a long time so that was fun. We went to dinner, went shopping, went to the beach and then she drove me up to Tampa so I could visit another beautiful warrior woman whose bone metastasis were keeping her from the Annie Appleseed conference. I hadn’t seen or heard Darlene’s voice in 15 months and it was SO great to see her. We ate at The Cheesecake Factory (no not organic) and I’d never been before, the food was outstanding for a chain restaurant! I met another friend of her’s, another Eleanor who is a long term survivor too. I really enjoyed the time with my Aunt and am grateful to have her in my life.

Annie Appleseed Project – 2011 Annual Evidence-based Complementary & Alternative Cancer Therapies
I had written to Ann Fonfa, the organizer of the conference and the founder of The Annie Appleseed Project and she got me in touch with Linda from Sarasota who gave me a ride to West Palm for the conference. That was a very enjoyable 4 hour ride for me, I hope it was for her. Those who know me are probably at least smiling because they know that this lovely lady got to hear way too much about me but I’m kind of an open book that way.

Julie made it down from the Pacific NW which was awesome! She had a fabulous roomie in Luana and I had a new roomie too, Elise from NY. Elise filled me in about a couple of things she thinks I should look into and that was helpful. She is a pretty straight shooter too. Luana does some naturopathic things and works with pharmaceutical grade essential oils that can be applied topically and even ingested. That was very educational and I decided Luana was going to be my friend (several of my friends who also had that experience are laughing as they read this). She lives in NY as well so… road trip! Not today but definitely a trip is in order.

I got to know a couple of the gentlemen from American Biosciences a bit better this year. Julie, Luana and I went to dinner with them one evening and that was a lot of fun. We danced at City Place, they have an outdoor band and enjoyed food and wine. Did try to do a little kinesiology with Luana out by the pool and of course – it rained. She has the most wonderful little ‘therapy’ dog, Fonzie, who liked me, she even let me take care of him some of the time.

Really enjoyed presentations on IV Vitamin C, nutrition, mushrooms, oncothermia and hyperthermia, oh and any of my friends who are looking at mammograms; ask about thermography instead. Thermography can detect problems years before mammogram. Tried out a biomat and ionized alkalizied water.

Ft. Lauderdale
My cousin, lives in Ft. Lauderdale and I hadn’t seen him in WAY too long so he came and got me on Saturday and I stayed two nights with him. His mom, flew down from Pensacola to see me and I got to meet his wonderful girlfriend. We talked, watched movies and made it to the beach for one last visit, it only was a short one because oh hey, it rained again, but it was the beach.

My cousin is somehow going to be 30 in a few weeks. Still trying to figure out where the time went. He has grown into quite a fabulous man and I think he is wonderful. His mom and I stayed up way too late talking on Saturday night but I hadn’t seen her in a long time either so it was worth it. I LOVE MY FAMILY AND AM BLESSED TO HAVE THEM ALL!

and back to real life
I flew back home to my children and husband on Monday. It was a long time to be away from my kids and I was so happy to see them. They are my reason. Of course my daughter came home from school sick that day and was home for the next two days too, she so seldom gets sick, someone suggested she was “Mommysick” and just wanted to be with me and you know what, that is fine by me (she was legitimately sick too).

I love the beach, I know it isn’t for everyone but it is for me. I really do wish I had gotten the courage together when I was younger and moved to Florida and the beach. I love it there, I really do, I could walk on the beach every day and never get tired of it but my life would be totally different right now and pair that with the fact that I wouldn’t trade being close to my family. I wonder how many of my family members I could get to move… Husband? Mom? Dad? Sister? Who’s up for it? We do have two places we can go and stay this summer though if we decide we want to, hmmmmmmmmmm

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Two Awesome Conferences, seeing relatives and friends and then back to real life… Part 1

11 days were very full! I went to the YSC C4YW in Orlando, went to visit a friend in Atlantic Beach, then to visit my Aunt in Sarasota, then to the Annie Appleseed Project Conference on Complementary and Alternative Therapies for People with cancer in West Palm Beach and then to visit my cousin in Ft. Lauderdale. Two nights in each location. Glad I’m not on chemo and feeling good. The one bummer of the week was that my wonderful friend Eleanor couldn’t make it down, having some issues around a tumor and treatment and wasn’t up for it. Missed her bunches!

YSC & Avastin
The YSC conference was fabulous. Met some new people and got to know some people better. There was a lot of conversation around Avastin, a drug that the FDA has decided to take OFF the approved list for stage iv breast cancer (it will still be approved for other types of cansur). The issue according to them is that not enough women show enough improvement/live longer. There are a couple issues I have around the disapproval. First, it tends to be more helpful for women with more aggressive types (inflammatory, triple negative). Second, there are over 18,000 women who are currently still alive and showing no evidence of disease (ned) because they are highly responsive to Avastin. One woman I talked to has had NED for 7 years on only Avastin, and she will no longer be able to get it but even if she can her insurance company will no longer have to cover it and it is an expensive drug.

I have two things I’d like to say to the lawmakers who are getting ready to vote about this again. When you have stage iv breast cancer and small children… even a few weeks or months can be precious. Please consider our children when you vote. Taking it off the approved list is not necessary, you can get the word out that it isn’t a first line treatment. Taking it off the list takes an opportunity away from women who need every weapon they can get. We understand the risks, we understand that it may not help us – every medication we take comes with risks and might not help us – if we are willing to take the risk please don’t take the opportunity away.

There was lots of conversations around trials, VEGF, PARP inhibitors and Eribulin/Halovin. There was a fabulous AM yoga class too.

My favorite session was the breakout on ibc. Dr. Kimberly Blackwell from Duke was the speaker and she was awesome, I’m ready to make an appointment to see her. She talked about the epidemology, biology and treatment for ibc. I learned a lot and I’ll summarize it in another post. The most amazing thing she said and had on paper “ibc is HIGHLY TREATABLE”. It is the most hopeful statement that a medical professional has made to me in almost two years regarding this dis-ease and I told her so. I teared up when I saw it and I’m pretty sure I wasn’t alone. There were about 900 people there from what I understand and there were at least 16 of us with ibc at the conference, maybe a few more but not many, and that is inline with the numbers, less than 3% and I’m going to guess that most if not all of us were in that room.

Traveling & Atlantic Beach
So at the YSC I put up a note on the message board that I was looking for a ride to Jacksonville, my friend Melisa lives in Atlantic Beach. Two women saw my note and I got to spend a few hours with Alex and Tracy from Jacksonville as we drove north. We had several funny incidents and all kinds of conversations. Both ladies are very kind and I appreciate the ride.

Melisa’s friend David picked me up and I got to Mel’s house, on the beach, it was wonderful. A great night out, several walks on the beach, friends at her house and finally a fun trip to the hair salon. Mel and I met about 20 years ago when her son was in the preschool class I was an assistant in and Zach and I got close and so I got close to his mom kind of by default. Lucky for both of us, we loved each other! We lost touch for awhile but thanks to the magic of Facebook I have gotten to talk to her and even see her (and Zach!) twice in the last year. I hope she knows how awesome I think she is, if she doesn’t, it is in writing now.

I was expressing frustration at my hair. Dark and curly thanks to chemo and reminded me of my grandmother’s hair. There is nothing wrong with looking like my grandmother, I’d just prefer to be a grandmother when I do. I was thinking about going platinum but it was going to be a lot of work, take some time and probably fry my hair so we just lightened it and it turned out…strawberry blonde. Cool!

Then off to my aunt’s house… but that is for the next post.

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