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There is an amazing organization called Inheritance of Hope. Their mission is “Every Family Deserves a Legacy”. They are an organization that sends families where a parent has a life threatening illness on memory making trips. I had sent in an application for us during all the radiation and gotten a note saying we were on the wait lists for this year. About a week later I get a call and there has been an opening to go on a retreat to Disney about three weeks later in June! I cried. We went. Sadly my husband couldn’t join us due to circumstances at work but my mom went with us. They also extended our airline tickets a few days and with some help from some other family we were able to go down early and go to SeaWorld and Universal, neither of which I had ever been too. I LOVED SeaWorld! We all did.

My Dad and younger brother ended up driving down and going with us those first few days due to some miscommunication I had about getting help with the kids, SO we spent three days with Grandpa and Uncle, they left, Grandma came and we spent almost four days with her! It was a great trip. My family once again was awesome and we are still so blessed.

Inheritance of Hope and their volunteers were amazing. Jessica was with us and I mean with us. She went on rides, made sure we had our tickets, our disabled information so we didn’t have to wait in line, helped with food, the kids, everything. The organization made sure I had an electric scooter rental so I could get around, they provided all our meals during the retreat days and had Mickey come to dinner with us the first night and all the kids got to meet him.

We get home from that trip, sufficiently exhausted and had about ten days at home to recoup before we were off with family again. My fabulous sister rented a seven bedroom home on Pensacola Beach complete with its own pool and across the street from the beach itself. She arranged for the family from here to drive down (about 11-12 hours) and also for some of the family from Texas to drive over (about same drive) and 17 of us holed up in a house on a beach for a week. The kids (six of them aged five to fourteen), the cousins (three and two spouses) and the parents (the other six). Overall we did pretty well, there is always drama with that many people especially relatives but it was great!

We had some amazing food. Fortunately I seem to be from a family of good cooks. We had Bbq Ribs, Chicken and 40 Cloves of Garlic, Pork Roast and we did go out a bit. The parents went out one night and the cousins took the kids to Landshark Landing (a Buffet Restaurant on the beach). The next night the cousins went to dinner to Hemingway’s and had a trigger fish special with artichoke hearts and spinach with garlic mashed potatoes that was really good.

My sister and her partner brought down a sailboat, a Hobiecat they recently purchased. Between weather and a mishap it didn’t get quite as much use as I think they would have liked. I didn’t ever get out on it, neither did my son and I don’t think one of the other kids but it really is okay, everyone had a fabulous time regardless. There was a huge pod of dolphins that went past one morning and that is always cool to see, especially for kids.

Mom and I flew, I could never have done a car ride that long, it would have been painful and exhausting. The last night they took us to a hotel near the airport – everyone was leaving really early and no one had room in their car the next day. Our flight wasn’t until the afternoon that day so we got the opportunity to see even some other cousins.

The family we were with during the week is my Dad’s side. The cousins we saw on Saturday before we left was from my Mom’s side of the family. My mom has a brother and he has three sons raised in Alabama and Pensacola. His middle son is in the Army and leaving for Korea in several months and got married recently. He is home from Arizona right now and wanted to show his new bride beachesw on the East coast as she was raised on the West coast. His mom lives in Alabama and they were visiting her so they drove to the beach and and happened to be staying close by. So my cousin came over and we got to see him for the first time in years – he is such a man now – and meet his wife and see his mom who we also haven’t seen in years. It was very nice, we didn’t manage to get in touch with some other people nearby it would have been good to see but it was a busy week and I can’t wait to go back!

I cannot believe how close school is, my daughter still has a week a long camp, we have passes to many local attractions and I’m looking forward to using those. We have a lot we want to do but I need to pace it.

I did come home and have scans this past Monday, mostly better, treating some new things on the back of my neck but I’ll elaborate on that next time.

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The last two months would have been impossible without my Mom and Dad. Heck, I’m not sure how I’d have gotten through the last two YEARS without them. Mom has been to just about every doctors appointment I’ve had since the first week and Dad had been at most of them. If he wasn’t at the appointment it was usually because he was taking my son for me. They drive, pick up lunch, pick up kids, take me to run errands, let me nap… I am so blessed and fortunate to have the both, to have them both close by, for all their support in so many ways. Since I started radiation in MARCH at least one of them has been here everyday during the week, to help me get the kids up, fed and off to school, keep me fed and rested and take me to treatment, get kids picked up and together until my husband got home and if my husband had something he needed to do that evening, Mom or Dad generally stayed and helped get everyone to bed.

Keep in mind, my parents divorced when I was 10 and it took a long time for us all to be close like we are – and we are unusually close for a family that has divorce in it. My Mom lives about 10 minutes from me and she still works full time. Fortunately she is in a job that allows her to work remotely and they have let her work from here. My sister installed a secured wireless network in our house as soon as I was diagnosed so anyone in the family and my husband could all work from here. Mom is an early riser and has gotten here and often actually cooked breakfast, and given how my daughter loves bacon and they both love french toast and pancakes, that has been popular.

My Dad lives about 15 minutes away with his beautiful wife and my teenage brother. Dad retired right after I was diagnosed and while he has stayed busy he is also always available, all I have to do is say the word. Dad, one of his friends and my uncle from Texas did a ton of the work on our kitchen last fall. He has a great time with the kids and he has come over and gotten them off to school and sent me back to bed, taken me to the grocery, the doctor and anywhere else I need to be.

I know that either of them would give anything for our family to not be dealing with this. I know it is hard for them to see me when I am feeling sick and I’m sure they hate walking into the doctors office just as much as I do. Don’t get me wrong, my doctors and nurses are great, they take excellent care of me and it isn’t anything personal but I’d prefer to not need to know any of them. Mom and Dad have been amazing through all of this and are such great role models for me. You do what you need to do because you are the parent and that is how it works. I know they love me, I tell my kids all the time that they will have some idea of how much I love them when they finally become parents themselves. I look at my kids and I know how much my parents love me. It truly is walking around with your heart outside your body. I thank God often that it is me and not one of my kids who is sick, but for my parents, it is their kid.

We are kicking it out. NED is still my friend. I’ll meet him – SOON!

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mostly mine obviously but I’ve talked to another ibc survivor who has also recently finished rads for brain mets and another bc survivor who was just diagnosed with brain mets this week and a couple other survivors of other types. Many have small children. Some have slightly older, a few have high school and even college aged children…kids have been on my mind.

We all choose to deal with it and tell our kids different things, different amounts, different ways. It is always interesting to me to hear how other people handle it. Some choose to protect their kids as much as possible, some not even referring to it as cancer. Some tell some things and leave it very basic. Some are afraid that telling too much will make their kids scared, others think telling them too little will make them scared and wondering. Some choose to get them around other kids who have similar experiences and fears.

The way we have chosen to deal with it is to be as honest and age appropriate as possible. I’ve talked about some of the counseling and camps my daughter attends. My son will get to go to the day camp this year too. I learn about things they are thinking as they do all of this too. I found out my daughter thought I could just be sitting there with them and just ‘die’. She’s been living for almost two years thinking I could die any moment. I felt terrible but it explained a lot, why she would get so upset at being away from me, even to go to school. Why she worried so about her little brother being at home with me alone during the day. Now she and I both have a better understanding and we opened up another line of communication. When this first started and she told me that she was scared, I told her then that I was too, but at the time we were getting good news and we didn’t need to be scared. I also assured her that if a time ever came where she needed to be scared, I’d tell her. She knows she can ask me things, she asked me last week about who would take care of her if I died, meaning, who would get her ready for and to and from school and make sure that her lunch was packed and she got to lessons and all those things moms do. We talked about the possibilities, and how she felt about some of them.

Her teacher tells me that when she gets upset at school that she handles it appropriately and asks to see the guidance counselor. She also sees a counselor who specializes in kids who have a family member with cancer. She tells me when that counselor shows up at school, I ask if anything happened that she wants to tell me about or any questions that came up she wants to talk to me about. Usually she says no – and I’m okay that she feels like there are things she does better discussing with someone else. We all need our people we can talk to about things.

My son, he was 3 when we started this journey, he is 5 now. His understanding has developed some but it is still very much “Are you going to die?”. If I say “No” or “Not today” or “Not if I can help it” he generally looks at me and says okay and goes on with what he was doing. I don’t think he ‘gets’ dying, or what forever, or never seeing Mommy again means. But he still asks every couple of months, so I know it is on his mind.

My bead is that our kids can tell when things are up, they live with us, same house, same rooms, overhearing bits and pieces of things that can be scary. For example, I finally was “sick” from treatment a week ago, I had to go to the bathroom and be sick. For the first time in two years of this there was something other than tired and bald and it was scary for them. I was trying to tell them when I felt the need to go be sick so when I came out – I explained.

They are probably more intuitive than most adults and my approach is that I tell them so that I can control the information and hopefully head off their brains from going to crazy or scary places and the idea that addressing their fears head on will help them handle it all. But who knows. We all do what we think is best for OUR families and whenever we talk to someone whose approach is different it does make us wonder and sometimes maybe rethink. I’m not the only person in my house who ‘has’ cancer. I’m the only one with it in my body but from the day I was diagnosed my kids, husband, parents, siblings, cousins, aunts and uncles were ‘diagnosed’ too. So were a lot of my friends. They are truly my co-survivors – one and all – but my kids and husband have to deal with the brunt of it every day, every minute because we are together all the time. I just want to help them get through this journey stronger for the experience and as unmarred as possible.

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The hair started coming out this morning, scalp had started tingling a few days ago so I wasn’t surprised. No big deal, for me anyway. My daughter, a little more so. The bald mom thing has always been a stress point for her. It makes me outwardly different and not just ‘different’. We told her and her brother almost two weeks ago and while she took it just fine, all things considered, I know it weighs on her mind. We have a wonderful counselor who comes to see her at school and is from a local group called Cancer Family Care. Her guidance counselor at school provides lots of support. If she gets worried or sad at school she tells her teacher and they let her go talk to the counselor. She also has lunch with the counselor every once in a while and the counselor started a stress management group and asked my daughter to participate. A stress management group for elementary students. So unfortunate that these things are needed.

She goes to a day camp once a year that she enjoys – all kids who have a family member who has or had cancer. She is going to one of Camp Kesem camps this summer too, a week long camp for kids who have a parent who has or had cancer. Those are great, she is surrounded by kids who ‘get it’. Just like my conferences are good for me because I am with women who are there, and who live it and get it. My friends are all wonderful but there is a difference when you are with someone who is walking the same path.

Last night she got upset and finally vented some, about everything. Crying, beating fists on her bed, and finally just being exhausted, because sometimes it is exhausting. I want a normal Mommy, I don’t want a sick Mommy, I don’t want you to have cancer, I don’t want you to be sick, I don’t want you to lose your hair, I don’t want to lose you, I don’t want you to die, I want a normal life and a normal Mommy and a normal Home!

You know what baby… me too. This was not on my radar for my you or your brother, for my family, mother, father, husband, sister, brother, aunts, uncles, cousins, friends. I understand that you all are my fellow survivors. I know that when I get good news you celebrate with me, I know that when I get less than fabulous news you get stressed and scared with me and then help me get on and deal with it but I still wish none of you needed to. I wish it every day but we all know about wishes.

I’m getting there. We will find NED, we will be a story in 20 years of a woman who beat the odds, continually, and I will help my friend Tami promote her next book about Miracle Survivors (From Incurable to Incredible).

“No! Try not. Do, or do not. There is no try.” Thank you Yoda..Trying isn’t one of my options, doing is.

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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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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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Yay! but I feel so guilty…

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” Elizabeth Stone quote

Most of the time I am mom. My kids are with me 95% of the time that they aren’t in school. I have an opportunity to travel without them. I won’t see my kids for 9 days. I have NEVER been away from either one of them for that long. Not in their entire life. I’ve been away from my son for 6 days once, but my daughter was with me then.

I’m excited to go. I get to go to two conferences that will be educational and good for me and there will be a lot of great energy and I’ll meet new people and see ‘old’ friends who I cannot wait to see, and I’ll get to visit with a couple different relatives and another friend. I get to do a lot. I get to go to the beach. I will miss my kids awfully, terribly, every day. Yes I know that is improper grammar but it is accurate. I’ll also smile and laugh and have a good time every day.

My daughter has a tough time when I’m gone like this. She cries about once a month because she doesn’t like to be away from me to go to school. No it isn’t an unhealthy attachment, it is thanks to the d*$% cnaecr. She is worried that something is going to happen to me and she isn’t going to be here to help. She worries that something will happen to me and her little brother will be at home alone with me and scared. She worries about things that no 8 year old should have to even think about let alone consider as a real possibility. It doesn’t matter to her that I am doing fine right now and that her brother is getting older and more capable (he just turned 5!). She worries that since I am ‘sick’ that something will happen.

My son will just miss me. We are together every day pretty much. He goes to preschool several half days a week but most of the time he is with me. I’ll arrange for them to be cared for and to have a good time but they’ll miss me and I’ll miss them and I’ll be happy to be with my friends at these conferences (for a second year in a row!) and then I’ll be excited to return home to them. Hopefully with new energy and drive and ideas and we will move forward. I’ll also worry about them and wonder about them and think about them and call them every day.

So yay! I get to go and learn and share and rejoice and mourn and talk and listen and smile and hug and get some time for me, but I feel so guilty about leaving my kids for that long. So I’ll come back better for the time away from them, just as some day, when they leave me, they will leave better for the time with me.

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