Young survivors unite - and dance!

The local chapter of the hair club for women (what us sassy young breast cancer survivors are calling ourselves) invites all young breast cancer survivors (and their friends, families, physicians, etc.) who wish to join us to celebrate life as survivors as we don our pink wigs and dance around while being filmed.  It's our own answer to the pink glove dance video that's all over the internet.

If you'd like to join us, send an email to Tira (see pic below for her email address - click on the picture to enlarge it) and she'll get you the details. We'll be dancing and filming on Saturday, September 25th, somewhere in the Los Angeles area. We hope you'll join us.

BUT, if you're not in the area or can't join us in person for any other reason, you can still do it: take video of yourself and your peeps and email it to Tira. :)

A makeover!

 I'd love to get some hair extensions to catapult me past this transitional hair regrowth phase right into a preferable "normal" hair phase but my hair dresser tells me that they'd look awful since my hair is so short. She said I'd need it bob-length for it to look natural and that just isn't helpful since bob-length is the actual goal.  Since learning more about the dangerous chemicals in skincare and cosmetic products, I'm not interested in facials and make-up style makeovers so what is a gal to do!?

So I figured...if I can't have much say in the hair department just yet, and I can't afford to resume my former addiction to designer handbags (I'm broke) or spa visits (no exposure to hot temps in hot tubs, steam rooms and the like due to lymphedema), why not a blog makeover!? I just selected a new template using the new designer - what do you think?

And while I'm on the subject of blog administration, I'm curious to know what else you might be interested in hearing from me. I'm tossing around some ideas for a website and I realize that my blog followers have different reasons for following. Some of you are survivors, some are friends or family members of mine or of other survivors.  What types of things would you like to hear more about from me?  Don't be shy - please comment.

AND, I have it on good authority (love you, Mom - you're such an effective snitch! haha) that there are a lot of anonymous followers that have never commented before and I want you to know that comments make me feel great and help keep me blogging. So, please do comment - I love hearing from everyone (OK, well not from the spammers - but from everyone else I do). If you have a blog that I haven't seen, please tell me about it.

Have a blessed day!

1 Peter 4:8 (NIV) Above all, love each other deeply, because love covers over a multitude of sins

Been busy....living! =)

I know, I know, I've been a bad blogger - I'm really behind in updating you on my latest adventures. I'm sorry!  But I have a really good excuse though - I've been busy living!

Life has become hectic again now that I'm back to work full-time, but I have kept my promise to myself that it wouldn't take over my life the way I've allowed it to in years past. I now work to live, not live to work.  In fact, I've been busy making sure that we are doing fun things in my off hours, even taking days off to take fun adventures away from home.

We've been having dinner picnics in the park on free concert Saturday night, we enjoyed the 50's bash/picnic at our church, and Cooper and me even took a trip to Ohio to meet up with 35+ other people in a lodge for a few days of fun fellowship!  Our Ohio trip was AWESOME. We met up with 12 other moms and their kids - there were 13 two-year-olds, and as many as 10 older children there with us in a beautiful 6-bedroom lodge in Hocking Hills, OH.  I met these wonderful women through an online pregnancy support group when I was pregnant with Cooper over two years ago. Many of us (up to 100) keep in touch via Facebook and a bunch of us thought it would be fun to meet up so we flew out to meet up with the Midwest gang and we're so glad that we did. I am so incredibly blessed and to have these amazing women in my life. What an awesome time we had and we hope to do it every year.

On the way home from Ohio, Cooper and I had quite the adventure GETTING home. Flying standby is hard enough but when you are a non-revenue (non-paying) standby passenger things really do get interesting. We started out in Columbus and couldn't get on the direct flight back to L.A. Since Columbus isn't a hub for Delta we realized we had to get out of there and to a hub if we wanted to get home so we hopped a flight to Detroit which had a couple open seats.  Unfortunately, once in Detroit, we were unable to get on the remaining flights out to L.A. that night so we spent the night at the Westin in the airport. That turned out to be fun though - sort of. Fun that we got to have hot shower/bath, room service and sleep time in a heavenly bed but not fun that we had to fork over the big bucks to do it. Oh well!  Middle of the night the room filled up with cigarette smoke coming from an adjoining door to a room next to us. Called security and they could smell it but the neighbor denied smoking and there were no other rooms to move to (they were sold out) so we had to crank the A/C to try to force the smoke out and go back to sleep. In the morning I asked for a discount and got the bill reduced to half which was a huge relief because Westins are not cheap at all - especially not the airport attached hotels where rooms quickly become a commodity.

The next morning we watched as 4 L.A.bound flights left without us and then my husband had a brilliant idea and he instructed me to head over to the gate for a flight to New Orleans. I joked with him that I appreciated him wanting me to extend my vacation by sending me somewhere fun and then he explained that he could see in the system that there were open seats on that flight and a flight to L.A. an hour or so after arriving in New Orleans with open seats on that one too. I asked him why the gate agents didn't know this and suggest it after seeing me and Cooper get denied seats on several flights and he said they just look for open seats at the major hubs (New Orleans isn't one of them) because they're so busy dealing with everything there at the
gate. Makes sense.  So, thanks to my genius husband, the plan worked brilliantly and we finally got home to L.A. late Friday night.  I learned a lot from that trip - about what we can and can't live without in our carry-on bags (can't check bags when you're non-rev standby) and how to find creative flight paths home when your first 3 (or more) choice flights leave without you. So now I'm even more ready for the next adventure!

My arm weathered the trip pretty well. At first I didn't think so because it looked worse from all the pressure changes of several flights and hauling bags and a car seat on wheels with Cooper on it. However, my lymphedema therapist measured me on Monday and in spite of it looking worse, only one of ten measurements had gone up and only minimally. Praise God for that miracle!  Once we realized the measurement results she looked up at me and exclaimed "you can fly!" haha. Yes I can!

I'm excited for our next adventure...a trip to Reno in the beginning of September to visit my BFF Diana and her awesome family - they're moving there this month following her husband's early retirement from the Army due to combat-related injuries from the Iraq war. Her husband, John, is an amazing man who has made great sacrifices for our freedoms and I am forever grateful to him and to his family for the sacrifices they've made for all of us. Thank you, Hartleys! I love you!

Who of you by worrying can add a single hour to his life? http://read.ly/Matt6.27.NIV

The church support ministry that I co founded has been moving along nicely with our monthly meetings. I've met some most amazing people and I'm grateful to God for putting it on my heart to start the group.  There are other things I know He's calling me to do - I see signs everywhere I turn and I have intentions to follow through. I just need to shuffle my time around and find a way to make time to do it. I will. Meantime, I pray that He helps guide me to moving things around to make it possible to fulfill all of my obligations and while enjoying life too.

Love,
Julie

I'm a vessel

Among my many daily prayers, I ask God to use me - to work through me to serve Him by helping others. I know He is answering my prayers because I'm seeing it every day and it is thrilling - truly thrilling. 

Just one recent example...I've been dealing with a flare up of lymphedema of my left arm and while that is not fun - it's uncomfortable and frustrating, actually - it has brought be back to my lymphedema therapist, Richelle. Richelle is brilliant. She understands the lymphatic system and can easily explain it to others, like me, who had no idea that such a system even existed in my body.  She is trained and certified by the best source of lymphedema thereapy education - Vodder - and she is highly sought by patients from all over California and some patients even come from out of state to get their therapy from her. She has an invention that has been tremendously helpful to me in a few ways - I can't describe or show it because it's not yet protected (patented/copyrighted) - and I know it would be of great value to others with lymphedema but Richelle hasn't yet pursued ways to bring it to market - at least not yet - but I would love to see it happen to help others improve their quality of life with lymphedema and for Richelle to be rewarded creating it.

During my previous flare-up (during radiation treatment in February), Richelle and I would talk during our sessions about how there is a shortage of skilled therapists and how she could have a positive impact on patients like me by helping educate us on proper prevention, treatment and maintenance. It's hard for one person to reach the masses of those that are affected by the condition - or could become affected by it when they have surgery and other cancer treatment that puts us at risk for lymphedema.  With my background in training, I made some suggestions on things she might consider doing and she seemed interested and excited about the ideas but she had to have surgery herself and focus on that and her current book of patients for the time being and my work with her was short (two weeks) and then I wouldn't return for more treatment until there'd be another flare up. Fast forward to now...

I'm seeing Richelle 4-5 times per week for a two-week treatment protocol to work on my arm to move the lymph fluid out of my arm. During my sessions we've begun talking again about how she can reach more patients who need her help and enable her to establish a practice that reaches distant patients without requiring them or her to travel.  I loved seeing her eyes light up as I described an idea that came to me as I was driving to my appointment. At my most recent appointment she mentioned her plans to talk to some others she knows that may be able to help her figure out how to act on one aspect of the idea and I got this awesome feeling that I had sparked something for her. I was grinning all the way home that day and it's a 35 minute drive.

Some people (non-believers, mostly) might think of these kinds of things as coincidences - even I used to view it that way - but I know there's no such thing. God puts is in places and circumstances that are essential elements of His plan for our lives. I love that God gave me lymphedema so that I could help stimulate the start of a practice that could help so many others with the condition by making Richelle's brilliance more accessible.

Today I attended the second meeting of a cancer support ministry I co-founded at my church. This ministry came about because God put me in a church membership meeting to meet another cancer survivor, Rob, who shared my desire for an opportunity for fellowship and outreach with other Christians facing the many challenges involved with cancer.  At the meeting, our Pastor said to the group that if you see a need then create a solution and the church would support and help nurture it.  Rob and I met just moments after that statement was made and learned that we were both going through this and agreed that it would be great if we started a group.  A month later Rob and his wife hosted a small group at their home as part of a Bible Study series that I attended and we got to know each other better and continued discussing how God had placed us together to start something and just 5 months later we started "Triumph" - a cancer support ministry for survivors, patients, caregivers and loved ones of those affected by cancer.

We all have our belief systems and certainly mine has evolved over the years from being a casual believer to being a major skeptic until I saw first-hand the works of God in my life as miracles were unfolding before my eyes every day once my cancer journey began.  Although only God knows His true purpose for my life, I feel Him revealing it to me little by little each day and I continue to pray and ask Him to show me how I can serve Him with my life and I love how He is responding. Even the "unfortunate" circumstances I find myself in (i.e.,lymphedema) are blessings to be celebrated as they are all part of His plan - opportunities to serve and make a difference, however big or small.

False alarm! Yay!

I'm so happy and relieved that Dr.B has checked my neck and he firmly believes it is not a lymph node that's enlarged but an irritated area likely from my port. He does not feel it is abnormal or cause for concern.
Thank you, God, for your protection and peace. Thank you, friends and family, for your prayers.
I sometimes feel guilty when I've asked for prayers or shared my worries and it turned out OK. But I can't allow myself to worry in secret and not get the prayers because that has not worked in the past and I KNOW the power of prayer. I am deeply grateful for all the prayer on my behalf and always will be.

Love,
Julie

PS - I have many posts on my mind and I'm sorry I've been so silent on the blog - its been a busy summer getting back to work and focusing on having fun and living life to the fullest. I want to share it all with you though so I will be working on that.

Chemo-versary and prayer request

One year ago today, at about this time, I started chemotherapy. I was excited and terrified too. I was thrilled to be able to assault the cancer as it had felt like eternity since finding out I had cancer. The doc suggested I take an anti-anxiety med before arriving and when they got started I received benadryl too (in case of an allergic reaction to the chemo) along with the anti-nausea meds before the chemo drugs began to flow. I was really out of it yet totally aware of what was happening. Totally aware of how blessed I was to have found the cancer at stage 3 instead of 4...totally grateful that God made it possible to receive the life saving drugs that flowed through my veins that day and for six months following. Incredibly grateful for the support and love I received to help me through it.  On this chemo-versary I just had a follow up visit at UCLA. I pointed out an area of my neck that doesn't feel right. The nurse confirmed it is a swollen lymph node. She asked who my oncologist is and when I'd be seen by him again. I see Dr.B tomorrow for my Zometa infusion. She asked when my last and next scan was/is. Next PET next month. She said it's probably my body fighting off an infection but he may send me for an ultrasound. Fuck is the word that comes to mind.

These uncertain times are difficult. I'm calling on God to bring me calm and peace to help me get through and fight off the fears that the enemy whispers in my ear. I'm fighting back. It could be unnoticed congestion from flying recently. It could be I'm on the verge of an ear infection or a cold.

Please pray with/for me. Thank you.

Isaiah 41:13
For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

Life is good, God is great!

That is all. For now :)
Sent from my Verizon Wireless BlackBerry