Friday, December 17, 2010

Think you're having a "bad hair day"?

If so, please think instead of all the millions of children, men, and women who are having a NO hair day as a result of going through grueling cancer treatment. 

I was one of those that really didn't care too much that I had to lose my hair. I even shaved it all off before it fell out so that I could donate it to a good cause (Locks of Love) before it disappeared on me.  In a way, I found being bald liberating. I didn't have to wash or condition hair, didn't have to shave my legs or armpits, and didn't have to blow-dry either!  But, I did have to contstantly fear sunburn on my sensitive scalp and deal with itchy hats and scarves to protect my noggin.  When I couldn't bear to be seen bald I had several lovely hair pieces to choose from thanks to a great wig store in town (Godiva's Secret). But at home I had to deal with my head being freezing cold at night while laying on cold sheets in an air-conditioned house which of course needed to be kept cold because of the crazy intense hot flashes I was having (chemo-induced menopause).

Part of me wanted my baldness to be seen by others in public - I wanted people to remember that cancer still has no cure. The other part of me dreaded having to relive the horror of my situation by answering questions or seeing people stare at the sick bald lady with the one year old in tow. 

One year ago today I shaved my noggin for the last time. For those that don't know this, your hair still does grow a bit in between chemo treatments. Not all chemo causes hair loss but many do - mine did.  Anyway, the in-between growth was patchy, sporadic and a bit creepy to be honest. So, it had to be shaved off and I would use Bob's electric razor to shave it once per week throughout my treatment from July - December 2009.  On Dec.17th, 2009 I shaved it for the last time (my final chemo was on Dec.15, 2009) before heading to a photographer's studio to have my photograph taken.  Crazy, huh? 

I wanted to document how I looked. I wanted to remember about as much as I wanted to forget. So, here I am, on my final "NO hair day", one year ago.

Photographed by Lee Brubaker Photography

Praise the Lord that I got through a full year post-treatment and here I am just a week ago at a park with my son:

Photographed by Amber Katrina Photography

Thank you, Lord, for your mercy and salvation! I'm so grateful for your healing power and unconditional love. Thank you for leading me back to you. For the brilliant medical care and coverage. For my compassionate employer. For the amazing and supportive family and friends you've placed in my life. For the new perspective. For the daily gifts and miracles. For using me to spread your great news. For every second of precious time.


Psalm 118

1 Give thanks to the LORD, for he is good;

his love endures forever.

2 Let Israel say:

“His love endures forever.”

3 Let the house of Aaron say:

“His love endures forever.”

4 Let those who fear the LORD say:

“His love endures forever.”

5 When hard pressed, I cried to the LORD;

he brought me into a spacious place.

6 The LORD is with me; I will not be afraid.

What can mere mortals do to me?

7 The LORD is with me; he is my helper.

I look in triumph on my enemies.

8 It is better to take refuge in the LORD

than to trust in humans.

9 It is better to take refuge in the LORD

than to trust in princes.

10 All the nations surrounded me,

but in the name of the LORD I cut them down.

11 They surrounded me on every side,

but in the name of the LORD I cut them down.

12 They swarmed around me like bees,

but they were consumed as quickly as burning thorns;

in the name of the LORD I cut them down.

13 I was pushed back and about to fall,

but the LORD helped me.

14 The LORD is my strength and my defense;

he has become my salvation.

15 Shouts of joy and victory

resound in the tents of the righteous:

“The LORD’s right hand has done mighty things!

16 The LORD’s right hand is lifted high;

the LORD’s right hand has done mighty things!”

17 I will not die but live,

and will proclaim what the LORD has done.

18 The LORD has chastened me severely,

but he has not given me over to death.

19 Open for me the gates of the righteous;

I will enter and give thanks to the LORD.

20 This is the gate of the LORD

through which the righteous may enter.

21 I will give you thanks, for you answered me;

you have become my salvation.

22 The stone the builders rejected

has become the cornerstone;

23 the LORD has done this,

and it is marvelous in our eyes.

24 The LORD has done it this very day;

let us rejoice today and be glad.

25 LORD, save us!

LORD, grant us success!

26 Blessed is he who comes in the name of the LORD.

From the house of the LORD we bless you.

27 The LORD is God,

and he has made his light shine on us.

With boughs in hand, join in the festal procession

up to the horns of the altar.

28 You are my God, and I will praise you;

you are my God, and I will exalt you.

29 Give thanks to the LORD, for he is good;

his love endures forever.


Tuesday, December 7, 2010

Rest in peace, Elizabeth Edwards

It's always sad when someone dies, even those we don't know personally - celebrities, public figures, anyone that we have admired for one reason or another.  But there is a different kind of sadness when someone dies from the disease you yourself have had and fought and fear a recurrence of.  I can't explain it except to say it is deeply sad and extremely terrifying.

It makes me so angry that this disease still doesn't have a cure. So much money and effort is put to it and yet cancer is taking over 1500 Americans every day (that's a Titanic ship every day).

Philippians 4:6 (NIV) "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Dear Lord, I beg of you, please bring us the cure. Amen.

Monday, November 8, 2010

The Pink Wig Dance is Here!

The Pink Wig Dance was produced to celebrate our love for life on the battlefield of breast cancer as young survivors. Armed in pink wigs and hopeful hearts we aim to raise awareness that breast cancer affects women (and men) of all ages. Prancing cancer out of our lives one dance at a time!
Click here to view the Pink Wig Dance!

Please view the video and email the link to your friends and family. Thank you!

Love and blessings,
Julie

Thursday, November 4, 2010

Faith - an evolution

Most people that know me well, especially those who knew me before I was diagnosed with cancer, know that my view on faith and religion has changed significantly since I was diagnosed.  I grew up as a non-practicing Christian. As a little kid, mom took me and my brother to church here and there, and we attended Sunday school sometimes but not consistently.  When I was in fifth grade and was getting too social for my parents' liking and my brother was threatened with violence on the little league field my parents decided to enroll us in a private Catholic school. Since we aren't Catholic we were exempt from participating in religion class (though we had to sit there and read quietly) and certain activities, we still learned many of the foundations of Catholicism, including the many memorized prayers said in mass.  Unfortunately, all the rules and judgment and guilt associated with Catholicism really turned me off and once out of Catholic school I rarely attended church. 


I didn't have a good relationship with God, going as far back as when I was a little kid when some really crappy stuff happened to me at the hands of someone that claimed to love me.  I couldn't understand how God, if He existed, could let such a horrible thing happen to me or any other child. So, not surprisingly, I became an agnostic young adult.  I went back and forth, wanting and needing God to exist and to be on my side but seeing so much pain, struggle made it difficult to trust Him and so I withdrew and became more and more skeptical.  I didn't stop praying completely, but I stopped believing it was helping so the prayers become fewer and fewer until finally I found myself one day watching Bill Maher's "Religulous" movie and actually agreeing with most of it just a few years ago when it came out.  Wow.


Things began to change after I got married. Poor Bob, bless his heart, thought we were on the same page with this religion stuff. Anyway, we wanted to start a family and I was sure that our advanced age (him being over 50 and me being over 35 at the time) that we may find ourselves unable to do so. I decided to pray. Three weeks later I was pregnant.  I figured it was a coincidence since I used a high-tech ovulation predictor to help time things.  But at 16 weeks into the pregnancy I was rushed to surgery when it was discovered my cervix was "incompetent" and I nearly lost the baby. Again, I prayed and prayed and prayed, thinking it was a long shot but I didn't want to take the chance because I really wanted and loved this baby. And, even though it was still a long haul after that, including 19 weeks of strict bed rest and nightly prayers asking God to protect my baby from harm, our precious Cooper was born healthy (except for reflux).  Hmmm...maybe it was the prayers. Maybe it was just that I followed doc's orders. 


Eleven months later I was diagnosed with stage 3c triple negative breast cancer.  Found it accidentally after having a highly emotional reaction to my friend and colleague's news that she had been diagnosed with breast cancer just a week before. I had been checked by my doctor every couple months through my pregnancy and every few months after Cooper was born and no suspicious lumps were ever found. You may recall that I went to get a mammogram after feeling a small bump that turned out to be nothing (on the non-cancer side) and that while there for the mammogram the cancer was detected on the other side.  A total fluke? Or, was a higher power leading me to make this discovery? Or something else?  I know that I sure was lucky to discover it when we did, giving me a more time here on earth to be a mother to my precious young son.


As I began treatment, something in me was quickly evolving. I was seeing life through a new lens - a lens of faith and determination. I started seeing miracles occurring in my life every.single.day.  Little things and big things. I couldn't help but think that only God could be responsible for the grace I was experiencing. The more I noticed, the more I prayed. And while not every prayer is answered the way I may have hoped, I believe they have all been answered in some way.  And, when I was compelled to find a church where I could explore and develop my new relationship with God, I was led to the most wonderful church in my area, NorthPark Community Church.  There I have learned so much in such a short time. I became born again on January 24, 2010 when I was re-baptized, and my faith has been instrumental in my treatment, healing and recovery from stage 3 breast cancer.


I have an uber-long list of examples of the many miracles I've witnessed that have led me to this new place I am in with my faith in God, and someday I will document them and share details. But for now, I just wanted to share that faith really matters, even to this stubborn gal who previously lacked it.  And, if you are skeptical or are just the type of person that needs more "evidence", then read and consider the following article about a study revealing the impact of faith and liver transplant survival.  This is just one example of many that are out there.


http://www.medpagetoday.com/Transplantation/LiverTransplantation/22530

I believe in the power of prayer. I've seen it work to heal and protect many, including me and my son.

Close family and friends know that my life today barely resembles my life before cancer, largely because of my renewed faith. I never thought I'd say it or believe it to be true but life as a believer is so much richer and fulfilling than before.  I continue to learn and grow my relationship with Christ each day. It takes time, work, and most of all - it takes a leap of faith.  It would have been wonderful to have gotten to this place without the aid of a cancer diagnosis, but I am grateful nonetheless to have finally gotten here. It's never too late.  Praise God, it's never ever too late.

The first Bible verse handed to me to reflect upon after I was diagnosed the summer of '09 was 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."  It's become one of my absolute favorites and has helped me through this journey.  My friend and neighbor, Cindy, gave it to me on an index card and it has been taped to a wall mirror near my bedside ever since.  Thank you, Cindy! I know God placed Cindy in my life to help bring me back to Christ. I'm so grateful for that.

Monday, October 11, 2010

Please vote for our video!

I joined up with two other breast cancer survivors and lifelong friends to create this entry in the Feel Your Boobies video contest. Please view it and vote for us.  We will be launching the Pink Wig Dance soon and we hope you find this as fun and entertaining as we did while we wait for the PWD launch.

PLEASE VOTE FOR US!!

http://youboob.feelyourboobies.com/contests/showentry/462878

Thank you!!!

Love and blessings,
Julie

Sunday, September 26, 2010

Pink Wig Dance day was so much fun!

We had a blast!  A bunch of breast cancer survivors and friends gathered in downtown Los Angeles yesterday and had so much fun dancing and filming for our viral video.  Here's a shot of the group having some fun.

Top row: Laurel, Sierra, Nicole, Lisa, Isabelle, Mary Lou, Middle row: Allison, Julie (in polka dots), Mandy, Bottom row: Jessica (in stripes), and Tira (purple hair tie and pink top). 

We can't wait to see the final video - it is going to be so awesome. We got SO MUCH great footage to use!  I've been laughing for 24 hours just remembering all the fun and silly stuff we did. What an awesome, blessed day we had!  God truly graced us with His favor - gave us the most amazing set to shoot on, great (though hot) weather, the perfect group of dancers - the list goes on!  Stay tuned for fun out takes and clips from this great project. I can't wait to get my hands on some clips to share with you.

Oh yeah, at the end of the day, me, Jessica and Tira shot a fun breast exam public service announcement that we're entering into a contest. As soon as we have that ready to share we'll post it and ask you to please vote for our video :).  

Thank you, Lord, for such an amazing and blessed experience. No matter how the video turns out or how successful it is once we launch it, you have surely given me a most rewarding and wonderful experience bonding with these amazing women. 

Special thanks to Gerry (Jessica's awesome hubby) for directing and filming the group - you were awesome! :)  

Friday, September 17, 2010

Post-op Update - Feeling great! PTL!

Surgery went very well yesterday. The team at UCLA is always so professional and compassionate. I always manage to have a little fun with them too.  

I mentioned in a post recently that I'm working on a project called the Pink Wig Dance. We are three survivors producing a viral video of survivors and loved ones wearing pink wigs, dancing, and posting for photos that will be spliced together in a short video set to a great tune and posted to the internet to raise awareness that breast cancer affects women (and men) of all ages and walks of life. It's our way to unite and celebrate life in the process of raising awareness. We have a blog with our mission statement and instructions for how to participate: www.pinkwigdance.blogspot.com and you can email the team at pinkwigdance@gmail.com.  

Anyway, I brought a couple of pink wigs along to the hospital and explained what we are doing and managed to get my surgeon and a couple of residents to put the wig on and pose for pictures :).  Like I said, UCLA is awesome! :) I'm so grateful to them for the incredible care they have given me and for helping me through this journey by participating in other ways such as humoring me and supporting me emotionally as well as physically. I've posted the pics below :)

More about the surgery -- the anesthesiologist agreed to use my port one last time to push the first dose of medication to get me drowsy and then switch to an IV in my arm once I was asleep so I wouldn't have that icky IV placement feeling which I so hate.  I had put the numbing cream on the skin over the port when I got dressed in the morning so it was fully effective by the time they put the line in.  
With one push of a syringe, they began the process of making me sleepy - I was getting general anesthesia once sleepy since they were doing both nipple construction and port removal and incision revision.  I was awake as they wheeled me into the OR and was moved onto the operating table and then I was out like a light.  I love that. Even better is that my body handles anesthesia really really well. It works well and I handle it well. I've never become nauseated or felt sick from it any other way.  I woke up two hours later, opened my eyes and looked around as if I had woken from a nap. I could feel a little soreness on the port removal site but felt no discomfort at all on my breasts - probably because my breast skin is mostly still numb from the original bilateral mastectomy.  
Bob handed me my blackberry (he knows me well!) and then he headed down to the pharmacy to pick up my medication (antibiotics and pain medication). I read my email, responded to some work emails (I know, I'm nuts), texted some friends to let them know things went well and I'd be home soon, updated my Facebook status, etc.  I know, I know, I'm addicted haha.  When Bob returned we got my post-op instructions and a wheelchair escort who was kind enough to take me to the Simms/Mann Center for Integrative Oncology one floor down so that I could drop off a bag of standard stylish wigs donated by a wonderful and generous church member for the women in the breast cancer support group conducted there. That's the same support group I attended weekly throughout my treatment.  The facilitator was thrilled to receive the donation and promised to bring them to the group next week to offer them first dibs and any that don't get taken by the support group members will be given to Helen's Room where patients can get free donated wigs while in cancer treatment.  

Once that was done, I was wheeled down to the parking garage entrance where Bob had the car standing by and ready for me to get in and head home. We were home by 2pm. 

I've been taking it easy, taking my antibiotics as instructed, limited my activity (no lifting over 5 lbs, no reaching overhead, etc.) and have only taken two pain pills in 24 hours. I OK without it now which is great, especially since the side effects (digestive in nature) are not pleasant and I could do without THAT which I would find worse than the soreness from the surgery haha. Besides, I need to be able to drive tomorrow so no more pain pills for that fact alone.

I'm glad I took today and Monday off from work to recover so I can really rest and get some good sleep and make sure I'm not doing anything stressful.  Unfortunately, Bob has to go to work tomorrow morning so I have to be diligent and remember not to pick Cooper up which will be a challenge, especially when I need to go anywhere. So, I have a 2-step fold up stool that I'll need to have Cooper use to climb up into the car into his seat and take that along with us when we go anywhere. Tomorrow I have my friend watching Cooper when I head out for a couple hours while I get out of the house for a couple of hours so I won't have to worry about it then and she'll watch him again Sunday when I'm at church so at least it'll be a couple days before I really need to get him into the car so that's good. I know I can call several other neighbors to help though if I need help getting him lifted into the car in the event the stool option doesn't work out. I'm so blessed and grateful to have such wonderful neighbor friends.

Once I've fully healed from this step of the process, the next step will be to get the nipples tattooed. If you google nipple reconstruction you will be amazed by how natural these fake nipples turn out. I'm excited to finally look and feel "normal" again - before the end of the year, even. Yay!  Of course, those that know me well know that I would have been ok without reconstructed breasts too. I'm all about living - being alive - to me, that's all that matters and the rest is icing on the cake.

Now for the pre-op pink wig fun....

Me with Dr.Crisera
UCLA Resident physicians Mandeep Sehmbey and Victoria Vo with me
Bob Olsen - my husband :)

So there it is - I'm so blessed to have had another very successful surgery at UCLA. I can't say enough wonderful things about them. Thank you, UCLA!!!!  Praise the Lord for such a wonderful team of health care professionals, for my excellent health care coverage, and the support of family and friends. I will never take these things for granted or underestimate their immense value. xoxo

Love,
Julie

Wednesday, September 15, 2010

It's a big deal

It's a bigger deal than I thought. In May I was going to get nipples constructed and have my port removed during same visit as the hysterectomy. But the plan changed when the lymphedema swelling resulted in one breast being larger than the other so instead it became implant swap out, minor revisions for symmetry, and hysterectomy/oopherectomy and keep the port til the next surgery so I could use it for another zometa infusion.I was relieved even though the port gets in the way sometimes when trying to cuddle with Cooper and he presses on it or puts his head on it and that hurts or when the line up into my neck gets irritating and causes swelling which looks and feels like a swollen neck node on that side, causing me to panic even though Dr.B says it's ok.

This thing has been an incredible blessing - helping me painlessly (mostly) endure countless blood draws and 12 chemo infusions and 2 zometa infusions, and even used it in my two recent surgeries to get me asleep without discomfort. It has spared my arm veins from being mangled at a time when they would be vulnerable (chemo) and helped me protect my arms especially the left one with lymphedema since it can be poked (too risky for infection and swelling danger).

I've had two clean PET scans since finishing chemo - Feb.1st and Sept.7th so now it is time to say goodbye to my port. Praise God, I don't need it anymore! Every time I say, think or type that I begin to cry. Joyful tears. Maybe some nervous tears mixed in too.

Tomorrow morning I go back in for nipple construction surgery and the port will come out and the scar revised to clean it up (it's ugly/angry looking). As I was getting ready for bed tonight it finally hit me. I'm done (with cancer). Treatment is done (minus the zometa bone protection I will get quarterly for 2.5 more years, the quarterly blood draws and follow ups and of course the nipple tattoos as the final step in reconstruction).
I really am a survivor! From stage 3c to "cancer-free" in 15 months. Wow. Praise God!

I am living proof of the Lord's power and miracles. He woke me up and set me straight and I am listening (and learning). He showed me His work in my life daily through this journey (and ongoing) - with the most amazing support network (you included), the most loving and supportive husband so certain of my complete cure and healing, brilliant and compassionate physicians, nurses, administrators (except for a couple - remember my first attempt to get a port!?), a generous and caring mother and father who came to help whenever I asked...an incredibly supportive employer and team at work who patiently and generously gave me the time I needed to get well without the fear of losing my job or health coverage. The exact right caregivers at the exact right time for my precious Cooper. A bearable (albeit challenging) course of treatment with limited and tolerable side effects. My many friends, family and colleagues who wrote, called and sent generous thoughtful gifts to cheer me up and donations to fund breast cancer research in honor of me! Awesome neighborhood friends who checked in on me, brought meals, helped with Cooper and the dog, and kept me company when being alone was unbearable while Bob was working. God led me to my new church home and family a year ago where my faith in God and mankind has been restored and raised to levels I didn't know were possible. And, of course, He brought me to the bravest, most beautiful warrior sister survivors with whom I share an unbreakable bond for life.

These are the works of an almighty, merciful, forgiving and instructional God who has transformed me and I believe is using me and I am so amazed, so blessed, so grateful. Thank you, Father, for these blessed gifts. I am humbled, grateful and determined to become worthy of them. Please continue to use me, Father, to spread the good news and glorify you in my thoughts and actions. Guide me, Lord, and help me to not stray. Forgive me, Lord, when I do stumble as I often do. Take my worries and fears, Lord, and help me live beyond my own abilities and fulfill your will for my life. Thank you, Father, for your healing and your mercy for me and so many others.

Lord, please wrap my friends Michelle, Theresa, Tracie, Tonya, and Sue in your love and light. Infuse their bodies with healthy fighter cells and medical ammunition to destroy and eliminate the cancer that has taken residence in them. Give them continued strength, hope and faith in your promise and word and bring about complete cure and healing as I know you have big plans for these warriors here on earth.

God, please hurry and show us the cure for all cancers.

This, I pray, in Jesus' name. Amen.

Faithfully,
Julie

Saturday, September 11, 2010

911 Every Day -- Please Stand Up 2 Cancer

Did you know that: 
  • 1 out of every 2 men, and 1 out of every 3 women in the U.S. will be diagnosed with cancer. :(  
  • Every 60 seconds, someone in America dies of cancer :(
  • 1500 people die of cancer EVERY DAY (that's equivalent to the Titanic tragedy DAILY) :(
  • Cancer accounts for nearly one-quarter of all deaths in the U.S., exceeded only by heart diseases.  :(
  • 1.5 million new cases of cancer will be diagnosed in 2010 in the U.S. :(

Cancer isn't a one-time tragedy with a one-day anniversary. It doesn't discriminate. It can't be stopped at our borders and our military can't protect us from it.
 
Will you please STAND UP 2 CANCER?!   Please DONATE to the Stand Up 2 Cancer foundation where 100% of all donated funds go directly to innovative, collaborative cancer research. 
Together, we CAN and WILL find the CURE. We MUST!

Watch the 2010 Stand Up 2 Cancer show here

PLEASE DONATE here.

THANK YOU!

Thursday, September 9, 2010

CLEAR! Dancing with NED!

The doctor just called. The PET/CT results were NEGATIVE - NORMAL! NO EVIDENCE OF DISEASE!  I'd be lying if I said I didn't hang up the phone, look up to the sky and thank God immediately and then sob like a baby. [Insert huge sigh of relief]

I'm so grateful to the Lord for His mercy and trust in me. I will not let Him down. 

Thank you all, so very much, for your prayers and support. I'm so incredibly blessed and grateful.

Romans 8:28 (NIV) And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Deuteronomy 6:5 (NIV) Love the LORD your God with all your heart and with all your soul and with all your strength.

The waiting! ;/

I'm sitting here at my desk trying desperately to concentrate on work. Muddling my way through my to-do list while a fog of anxiety floats around my head.  Tuesday morning I had a PET/CT scan. I'm grateful that these tests exist because they can bring peace of mind when the results are good news. But the waiting to hear the news is nothing short of torture.  Even when there is no reason to suspect anything but good results, it's torture.  

I'm anxious to hear good news so I can breathe a sigh of relief. But I worry about wasting precious thought time/space in the event that it's not good news. Will it be clear? Will it be not clear? Will I be dancing with NED again? (NED = no evidence of disease) Or won't I be?  

I try so hard to give my worries over to the Lord since only He knows where my life path is heading. He is in control now, not me.  It's hard though. So very hard. I've spent over 37 years thinking I was the one in control and old habits are hard to break. 

I go from thinking about all the awesome things I have planned for my future to thinking about whether any of it will even be possible. I wonder why my friend and sister warrior got her awesome news of her clean scan results this morning already even though her scan happened after mine at the same facility. So I called my doc's office and asked if the report was in yet. No. Insert heavy sigh.  Then I think why am I in such a hurry to know when I'm alone today. Sure, I'm interacting with people online and by phone for work, but Bob is away and Cooper is at daycare and I'm here with my computer and phone, remembering the last time I was alone to receive test results and it was not good.  Dear Lord, please let it be good news. And please help me accept it if it's not good news. Amen.

Philippians 4:6 (NIV) Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Sunday, August 29, 2010

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. :)

Wednesday, August 25, 2010

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

Thursday, August 12, 2010

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

Sunday, July 18, 2010

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.

Thursday, July 15, 2010

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.

Wednesday, July 14, 2010

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.

Thursday, June 24, 2010

Tuesday, June 8, 2010

Emerging from the fog...pushed out of the nest...into the new "normal"

My primary treatments were completed at the end of March.  As is commonly the case, I continued to experience some of the common and annoying side effects from both chemo and radiation. Fatigue, foggy brain, short-term memory challenges, premature menopausal effects like aching bones, hot flashes, and so on.  However, you won't hear me complaining about these things because frankly I'm grateful for all of them because it means I'm alive!

Cancer treatments - including surgeries, chemotherapy, radiation therapy, and for some targeted therapies - are not fun. While they target the cancer they damage healthy cells and systems of the body and it's a crap shoot in terms of what effects and damage one will have on the other side of the treatment regimen.  Some of us are luckier than others when it comes to side effects, short- and long-term.  Though, I happen to believe that if you're a survivor you are blessed - period.  And I believe that we experience things the way we choose to experience them (or the way we're convinced we will experience them). Two people can have the exact same side effects and still have the exact opposite experience coping with them. Our ability to cope (or lack thereof) is ultimately what represents how we choose to be affected by things. Some dwell on their ailments and let them rule their life or use them as excuses for not owning their life and moving forward productively.  Others embrace the new knowledge and understanding and find ways to use that to help themselves and others. If you have been following me on this journey you know by now which category I fall into.

Early on in this journey I made a decision to live. I also made a decision to give it (treatment) my all and to see it as a blessing from God.  The chemo drugs that some view as poison, I saw as God's liquid gold cure juice running through my veins and disintegrating diseased cells.  The radiation treatments that some view as nuking their insides, I saw as God's light and love surrounding me like a layer of protective armor squeezing out any last rogue cancer cells that may have been hiding out.  I truly believe that my choice to view treatment in this way, and my renewed faith and relationship with God got me through the treatments without knocking me down physically and mentally.

Don't get me wrong - I had some seriously crummy days. Every chemo cycle was a bit harder than the previous.  Eight cycles (12 chemo doses) is no walk in the park. I was so exhausted that every moment I was alone with my son I had to have planned out to help me get through it without falling asleep and leaving him unsupervised. And when I couldn't stay awake any longer I would take him into a gated and child-proofed room of the house where he could play and be entertained while I sat on the floor or a couch and not be fearful if I were to fall asleep.

There were days I couldn't stand for more than 5 minutes without losing my breath and balance.  I put up with a watering eye, muscle twitches and spasms, and neuropathy in my hands causing me to drop and shatter a number of glasses because the chemo was damaging my nerves.  My digestive system was a mess, alternating between having the runs 24/7 to being constipated for weeks and weeks. The hot flashes were intense and frequent - feeling like I'd been lit on fire and then immediately thereafter felt like I'd been shoved in a bucket of ice. When I would finally fall asleep at night I'd either be woken by a hot flash or my toddler son who still does not sleep through the night (he turns two this month).

Sleep was such a challenge and problem for me that a number of times I actually got a hotel room and took sleeping aids to get a good night sleep when my husband was home and could get up with our son while I focused on getting some sleep down the road at the Hyatt.

My mind wasn't sharp. I forgot things. I lost track of things. I'd start a sentence and forget what I was talking about - frequently.  I'd be convinced I told my husband something but really had only thought about telling him (or so he tells me haha).  Frankly, the chemo brain fog is the side effect that frightened me the most because I was terrified that I'd slip up and cause harm to my son when I was alone with him. I was terrified I'd forget him in the car or that I'd screw up administering his medication because I wasn't thinking straight all the time and was exhausted.  I was terrified of letting my colleagues down or even losing my job when I was working part-time during the 2nd half of my chemo regimen because I was so forgetful and easily confused.

When I was in the home stretch, starting the final treatment chapter of radiation,  I developed lymphedema and had to begin another series of treatment for that. I came back out of work and onto disability status because it wasn't possible to give work and my health the time they both needed to do it right since I had daily radiation and 3x week physical therapy sessions. I felt defeated at first because I wanted so much to feel "normal" again but as I went on and prayed I realized that God was looking out for me when he let my arm swell up - He knew I wasn't being honest with myself about what I could handle and that it was just too much and I needed to refocus on treatment and less so on other things so at the end of February I stepped back out of work.

All along the way I was still OK through this craziness. I decided I would be and I was. I asked God for the strength to push forward and He gave it to me - in the form of internal motivation, support and encouragement from friends and family, and more. I know how much worse it could have been - I've witnessed it first-hand with a friend that lost his life to cancer in '98 and with dear friends in my life now who had different experiences with their treatment. I have been blessed profoundly.

I was/am alive and every side effect, every discomfort, was/is a reminder that God wasn't/isn't finished with me yet. That these temporary issues are just that - temporary. And that even if they were long-lasting, they are far better than the alternative which simply was not an option for me. I choose to live.

As much as we (survivors) want to hurry up and get back to "normal" following treatment, we realize that it's a more challenging feat than just resuming your former life.  It takes time for chemo meds to get out of the system. It takes time for the skin to recover from radiation.  It takes time for the arm and breasts to recover from surgeries. It takes time for the brain fog to clear (think pregnancy brain only far more intense and longer in duration) and resume proper firing of neurons and the like - you know, what's needed for normal and complete thought processing and healthy memory activity.  

I'm grateful that I've been blessed to have the support network, the insurance policies and the compassionate employer that have all allowed me the time to focus on not just beating the cancer but healing from the treatments and having preventive and reconstructive procedures so that when I return to my "normal" life, I will do so confidently knowing it truly is time to move forward, to turn the page to the next chapter.

My new "normal" has many things that are the same as before - my place of work, my family, my friends, my home - praise God!  But my new "normal" has many new things too - my lifestyle and priorities have incurred an extreme makeover. For example, God is #1. My health (and my family's) is #2. Everything/everyone else comes after these and just about every position on my list has changed in the past year. Those who know me well will recognize how major a change this is for me.

This week (tomorrow!) I am going back to work and I'm jumping right back in with both feet - full-time. In addition to my realigned priorities and getting back to work, I have new missions to accomplish. One being the new cancer ministry that I'm co-founding at my church this month! Another being a book I've begun to work on with two of my breast cancer sister survivors.  I must be careful about biting off more than I can chew but I also must move forward and avoid the temptation to rest and recover for too long.

I hope and pray that this next transition will be smooth and that I will receive God's favor and mercy to allow me to return to work with a stronger and healthier body and a sharper mind. I ask the Lord to help me do my very best to serve and support my team and to set healthy boundaries that enable me to honor my new priorities and help me stay healthy. I'm so grateful to be able to return to work at a time when so many others don't have jobs. I pray that God will use me to fulfill His will and purpose for my life in every venue that I enter. That He give me the patience needed to figure out what that purpose is and how to be the best I can be. I pray for forgiveness for when I falter, which I admit is often, and for guidance on how to stay on the right path. I hope and pray that I can use my story to acknowledge that cancer is a real bitch but that it can also be a real blessing in the form of positive changes in a survivor's life.

Thank you, Lord, for giving me another chance to to make every day count - to find your purpose for my life and fulfill it, however long it may take.  Thank you, Lord, for pushing me out of the nest and back into [my new] "normal" and ever so blessed life. I won't let you down.

Monday, May 31, 2010

Wow! Breast cancer vaccine being tested!

Tears of joy keep streaming down my face as I daydream about this news story. Praise God it's gotten as far as it has and the testing continues. Wow. God is amazing! He makes all things possible.

Friday, May 28, 2010

On this day, one year ago...

On this day, one year ago...
...I was told that I had breast cancer ...I didn't know if I'd be alive much longer ...I didn't know how I'd get through it ...I didn't think I could do it On this day, one year ago... ...I knew my life would change forever ...I didn't believe that cancer could be a blessing ...I didn't have much faith ...I was terrified of what was ahead of me On this day, one year ago... ...I didn't know how much support I would have ...I didn't know God well at all ...I didn't know I could help myself or anyone else ...I didn't know I'd be a survivor On this day, May 28, 2010, I am a one year survivor of stage 3c triple negative breast cancer. On this day, I'm filled with faith and hope. On this day, I'm living proof that God is AMAZING! On this day, I'm unbreakable.

Wednesday, May 19, 2010

Crazy hair and surgical tape halter tops are "in"

...lower girlie parts are "out". Surgery went really well yesterday. I went under at 7:30am and woke up around 11:30am with a new left boob, a revised right boob, and no more uterus, ovaries and cervix. Woot! Once in my room I had to launch into my role as my own patient advocate rather quickly when I learned I was not getting any iv pain medication (just vicodin which didn't work for me last time) and I was only being permitted to have ice chips for 24 hours! I called a meeting with the RN and the in charge nurse and explained what happened last June when my pain wasn't proactively controlled and they agreed to order that the nurse on duty is to come offer me pain meds (demerol by injection) every four hours rather than wait for me to ask for it (because by the time I would really need it, I'd be behind the pain and in trouble trying to get caught up like last summer). Ever since the meeting they've done a wonderful job tending to my pain med needs and I'm very grateful for that. So...if this post is rambling or in any way confusing, I blame the demerol. I went without food or beverage of any kind (only allowed ice chips and sips of water) from Monday night at 9:30pm til lunchtime today (Wednesday)! Not cool. Apparently they were starving me so that I wouldn't vomit even though I've assured them I had no nausea whatsoever. Thank God for my lovely friend, Jessica, who brought me some contraband - an organic blueberry smoothie, organic blueberries and some other goodies that I could slowly consume while waiting for the doctor to change my dietary orders so I could have a real meal. Thank you, Jessica!!!! My dietary needs had to be taken up with the doctor. When one of the residents came to talk to me about it he explained the main concern was that I'd get nauseated and vomit (my translation of that was that they didn't want to have to clean up the mess so it was easier for them to starve me). He advised that I shouldn't eat anything, including the beautiful organic blueberry smoothie that Jessica brought me. Since they were mainly concerned with me vomiting but not expecting any other gnarly side effects of consuming something I thanked him for his advice and proceeded to cautiously sip on the smoothie. Thankfully, I've never had any nausea or vomiting from anesthesia and this is my fourth surgery since June '09 (all performed here UCLA). The subject of the catheter came up and I explained that I was feeling pressure and the need to go to the bathroom. He told me to use the bed pan (by the way, sadly and hilariously funny is the fact that the bed pan is pink). I raised both hands and showed him how on one hand I'm tied to an iv tube and the other hand a pulse-ox cable and then lifted the blanket off my legs and showed him the compression garments and cables attached to both of my legs and asked him to instruct me on how exactly one should go about wiping their rear end while laying down and tied to all this stuff. He suddenly realized I was serious and not some little kid trying to get out of doing her homework. I seriously considered using the bed pan and I seriously resolved not to. I recommended he take the bed pan home with him and try it out so that he'll know how patients feel when faced with that as their only option for relief while tied to the hospital bed. He laughed, nervously, and admitted that really every doctor and nurse should be required to do that so they'll know how patients feel. I agree. Somehow I doubt that he'll follow through to find that out. Oh, and in addition to both arms and both legs being attached to tubing, I had a catheter attached to me too and that thing was really cramping my style this time. I tried to convince them to take it out last night but they wouldn't take it out til this morning. I really did not want to use the pink bed pan and was determined not to and thankfully I managed to avoid it. I was visited by several doctors today, including my favorite Dr.Crisera (plastic surgeon, aka Dr.McHotty, aka Dr.C) :) and we agreed I could/should spend one more night because they want to see to it that I can handle solid foods and once I get home Cooper will be all over me and wanting me to pick him up which I can not do for 2 weeks. Dr. Heaps (OB/GYN surgeon, aka Dr.H) came by shortly afterward to check on me and he too agreed I should stay the night and he told me that everything he removed appears to be benign PRAISE GOD! but that official pathology results weren't in just yet. I had barely any blood loss during surgery - he told Bob it equaled a tablespoon or less. I told Dr.H about how hungry I was and how I had no issues with the sips of the smoothie last night so he changed my orders so I could have a regular meal at dinner time. Once I heard that I started nibbling on the rest of the fruit Jessica left for me. Besides the two surgeons, I've been visited by two teams of residents assigned to my case. I forgot which team belonged to which division (plastics or gynecology) so one time that a team entered the room I asked them if they were here for the hooters or the hoo-ha. :) Now that I've finally had a meal (first full meal in 48 hours), I can say that it's been a good experience - nurses are on top of everything around the clock. I also just received the pain meds and my eyes are heavy and about to close (actually I think I dozed off halfway through composing this haha) so it's time to wrap up this update and get onto the very important business of sleep. :) Thank you for your prayers and positive thoughts! I am praising the Lord... for everything...including my crazy hair and surgical tape halter top! ;) Before surgery: After surgery: Love, Julie