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Archive for the ‘Conferences’ Category

Finished brain mets on April 19th. The hair was gone, the scalp sunburned and oddly enough, the left hip was aching. Hoping it was just a bulging disc in my back or a pinched nerve causing the trouble. Well it kept getting worse rather than better, I actually started taking vicodin because the motrin wasn’t relieving it anymore. Told my onc and we got an MRI of my hip. Go to see her and have now graduated to percoset some of the time because the pain won’t let up and she says, hip MRI doesn’t show really anything that should be causing you this much pain except maybe some arthritis issues due to the lack of estrogen in your system.

I tell her about how it is now moving down my leg and nerve issues in my pelvic area so she decided we should get an MRI of my lower back. That shows a small tumor on my conus, a little area at the bottom of the spine and there is stuff wrapped around some of the nerves and that is causing a lot of the problem so yesterday we start back on radiation on my lower back. This one sucks. I’ve had two treatments and vomited both times – nauseous the rest of the time and have been in so much pain since yesterday I asked for a better pain killer today. Oh yeah, and it looks like I might have shingles AND we have an MRI of my upper spine scheduled for Tuesday as it is likely it is there too since it was in my brain and on my lower spine.

To add to all of this I was supposed to go to a conference in Philadelphia this weekend for, wait for it…. Women with stage iv breast cantsur. Can’t go – between pain, nausea, vomiting, exhaustion and that they want to treat me on the weekend. No go.

I also may now have to be cautious about riding roller coasters!!! The indignity! Between brain and spine I might be one of those who falls into the “Do not ride if you have one of the following conditions…” That would really make me crazy!

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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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Another beautiful canser fighter, Daria Maluta, flew to heaven this weekend. I was looking at her blog this morning and six days before she passed she posted about this: “I am feeling ever so rushed to get things done knowing at any time I could be rushed to the hospital never to come home again. And then there are times I think I might have months to live. It’s a confusing weird place to be in.”

Fortunately I generally feel good and should have many more years to live but it doesn’t mean that I don’t wonder. In 2010 I met Lisa at a conference in February and she was doing well, she died in June. My friend Treena was declared cansir free in March 2009, but it came back in October 2009 and she died in January 2010. This thing can turn on you quickly and sometimes it seems without warning. For each of these women it was the mets in their liver that killed them. Scary for me as my liver has been described on multiple occasions as looking like swiss cheese. My onc says all the time that the important part isn’t so much the amount that is in my liver as how well my liver is working. You can have one tumor that is causing liver failure and you can have multiple tumors and your liver can work fine which is my situation but really, there is no telling.

I understand Daria’s comments only too well. On my list of things I want to do is get my house/desk/paperwork purged and more organized and get the important paperwork taken care of as I’ve avoided it for the last almost two years. Most important though is to work on things for my kids: photo albums, journals, letters, and tapes. This may seem morbid to many people but when I get all of those things into place I think I’ll be less panicked about everything. I worry that if this thing starts to get out of control that I don’t have enough things together for my kids. When I can get this stuff together then I can focus better.

One of my friends, Chris, tells me all the time that she sees having all of her affairs in order kind of like taking an umbrella with you on a day where rain is predicted. We all know that if you are prepared, the rain doesn’t come but if you forget that umbrella you end up walking home in a downpour. So in an effort to keep the skies sunny, I’m going to use the next couple of months to get things together.

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Time out for me.

So here I am at a conference on Complementary and Alternative medicine for cancer. I am exceedingly grateful to my Aunt for paying for me to come, I am truly blessed to have her. I am learning a lot, in a short time, but have probably learned as much from the people I have talked to as from the sessions. After the first several though I really started to think…”How the heck did I get here?!” A year ago I had just gotten back from Disney with my daughter and we were going to a friend’s house out of town for their sons birthday and then I had to get together my sons birthday. Fear about how many more trips and how many more birthdays I would see were pretty far from my thoughts.  This wasn’t on my radar a year ago at all. Frankly I kind of fell apart. Today is eight months since I was diagnosed and one month since the mastectomy and I have generally been doing well but I am starting to realize that some of this is backing up on me.

We define ourselves in so many ways: our relationships, jobs, interests, quirks, and illnesses among them. I am a mom, wife, daughter, sister, niece, cousin, friend, neighbor, babysitter, cancer warrior (fighter, survivor, patient, thriver), teacher, student. I like to scuba dive, take photos, rollerblade, travel, read, ski, and do puzzles. When we become a mom, at least for most of us, it becomes pretty much job #1 for at least the first several years of the lives of our children. It did for me. Then they said the c word. I have said many times that if I want to keep the job as mom that it had to become job #2 because beating cancer became job #1 and I have to succeed if I want to keep the #2 job. I’ve just spent so much time ‘running’ and ‘fighting’ for the last eight months and while the fighting has been “taking care of” myself, there is so much more to that phrase than just going to all the doctors appointments, getting treatments and getting a bit more rest.

I really need to take some time out for me – so today I really did. I looked at the schedule and I played hooky for part of the afternoon and I went to the beach. I should preface this with I LOVE the beach. I could walk on the beach every day and never get tired of it. I like the mountains but give me waves and the water any day. So… I went to the beach and I took some time where none of those labels I mentioned above had anything to do with the moment I was in. I laid back on the sand and just listened to the waves, I shut up for awhile and was just quiet, not thinking about what I needed to do, not worried about anyone (including myself for most of the time) and Ashley just sat on the beach. It was SO good for me.

I really have realized that I do need to make time to truly take a time out for me on a more regular basis and not feel guilty for it. Time when I am not with someone, doing something and preferably not on a tight schedule. If I can do it at the beach more often that would be great but it is a heck of a drive from my house.

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