Thursday, May 5, 2011

I could use your help

As I approach my 2nd year anniversary as a breast cancer survivor later this month, I'm also preparing to walk in my 2nd annual Revlon Run/Walk for Women to raise critical funding for research for women's cancers and educational and awareness programs.


If you are able to help me and my team, the Pink Wig Warriors, to meet our fundraising goals, through either a donation or by sharing our link to ask others to consider supporting us, I would be so grateful.  


There is a a tab/page on my blog dedicated to this with information and a link. See the tab referring to funding the cure, or you can go directly to my personal page for the fundraiser at: 

Please click here to visit my fundraising page for the Revlon Run/Walk for Women


Thank you so much for your support and encouragement! You are a blessing to me and I'm incredibly grateful.


Love,
Julie

Wednesday, April 27, 2011

Being a patient patient...

Being a patient patient is hard to do when you just want to be done and move on.  I had a productive, albeit frustrating (due to lacking patience), appointment with Dr.C the other day. He totally understands my concerns and is willing to do whatever necessary to help me achieve some sense of normalcy so I don't feel deformed or chronic discomfort where it can be avoided.  He did however say that I need to wait another month or so (next appointment is June 3rd) to see how things settle after this last surgery before we can make a decision about the next step.  He understands my concerns about us approaching the end of the current insurance plan year and me having JUST met all the deductibles, out of pocket maximum, etc and the fact that if we wait til after July 1 to take the next step it will cost me over $3,000 out of pocket (my heart sinks every time I think about this because I'm tired of being broke from medical and related bills). But I understand that this is not something that can be rushed either because the my choices involve surgery - one path is a series of additional minor surgeries, while the other begins with a major surgery involving several nights in the hospital and 4-8 weeks of recovery time. It's a big decision that will require thoughtful consideration and potentially a lot of planning (will need some help here for a few weeks since Bob is away so much and I won't be able to lift and do normal activity for a few weeks if we do go with the major surgery).

We talked through several options, the risks and benefits of each, and narrowed it down to two, one of which I was fearful due a risk that became a reality for someone I know but Dr.C was able to alleviate my fear and explained that my risk level for that particular complication was actually less than one percent which is not any different from the risk of that same complication with the current method of reconstruction and surgeries I've been having so that was a big relief and that alone put my mind at ease about this decision that I'll make in June.

Meantime, I'm not allowed to lose any weight because one of the options requires use of my current belly fat to form a new left breast and apparently I barely have enough to do it even though I'm carrying an extra 20-25 lbs on my frame right now.  So I'm hanging up my 17 day diet effort for now - part of me is thrilled to welcome carbs back into my daily life but the other part of me is bummed that I'll be feeling like a chub-a-lub through the summer. ;/  Giving up my ovaries last summer meant giving up my metabolism and I've packed on about 12-15 lbs since then which I really want and need to shed as soon as I can.  I can't give up exercise though as that's critical for recurrence prevention so this week I resume exercising but will focus on doing just enough to raise my heart rate for the 30-40 min/day necessary.  Walking instead of running. I'm OK with that as I've taken a break due to surgery and travel and it's been tough getting back into it anyway so this just forces me to resume gradually and I'm good with that.

Patience isn't my strong suit but this journey (plus becoming a mother) has forced me to develop more patience than I ever imagined I would have.

Dear Lord, thank you for Dr.C and the many other brilliant physicians and nurses who provide me with excellent and compassionate care. Thank you for infusing patience and understanding into my heart and mind when I need it most, and thank you for your unconditional love and guidance as I continue this journey to restore my body and seek to use my experience to glorify you and perform your will. Thank you for the most supportive and amazing husband and family and friends. I feel truly blessed and honored every day knowing you are for me and with me always. In your son, Jesus' name, I praise you and thank you. Amen.

Monday, April 25, 2011

(Re)Construction zone: proceed with caution

I haven't written about my most recent reconstructive surgery (which was on April 14th), largely because I'm so upset about it.  Don't get me wrong, I have one of THE most brilliant reconstructive surgeons in the area and at UCLA and he is also incredibly compassionate and caring - I'm very lucky. Dr.C has been amazing. He lays out my options, informs me of the risks and benefits of various approaches to the many steps of this process, is very talented and a great listener, and has been willing to fix things that I think many other surgeons might not bother with from what I'm hearing/seeing when comparing experiences with other breast cancer survivors.

Reconstruction has been a lengthy road for me, involving numerous surgeries. The approach I chose was bilateral mastectomy with immediate reconstruction with tissue expansion and implants.  Overall it has been a pretty straight forward process with no unexpected complications but I have had several challenges trying to achieve symmetry in shape, size and comfort because of the simple but aggravating fact that radiation changes the skin and tissue, making it less cooperative, increases lymphedema issues, etc. I handle surgeries/anesthesia really really well, thank God.

After this recent surgery, the right side finally looks wonderful - really awesome actually.  Unfortunately, in spite of our many attempts to fix it, the results for my left side (the radiated side) are not great. The appearance and feeling is actually worse than before this past surgery and that is why I haven't posted to the blog about it yet - every time I think about it I break down emotionally. Then the fact that I'm emotional about this upsets me even more because I began this journey not caring about my breasts' appearance - all I cared about was surviving this disease and being here for my family.  But I let myself be convinced by others that I would care later on and to just try to get the best results possible and I could always undo it later on if it didn't turn out well or whatever.  And then when something didn't look right I would hesitate to raise it but then would be encouraged to speak up because this is the only time it can be addressed and I have a right to get great results.   So I have endured numerous surgeries (which are just major inconveniences to my work and personal life schedule - not just for the actual day of surgery but for weeks before and afterward because I have to stop taking important supplements 3 weeks before surgery and then for 3 or more weeks afterward I'm not supposed to lift Cooper and have to avoid too much physical activity like working out till I'm cleared for those things -- so, it's a major time investment that requires garnering the help of others with Cooper since Bob is away so much). Again, I handle surgery/recovery really well thank the Lord or else I might have put a stop to this a year ago.

So why is it (left side) worse than before? Well mainly because I have lymphedema swelling that causes that side to be bigger and that's whey we've gone down implant sizes two times on that side (this last surgery included downsizing the implant) and the previous downsize was the right decision but this one not so much as the breast sits higher and remarkably smaller than the right side now.  Additionally, the lymphedema swelling combined with the toughness of the skin at the incision has made it such that the shape of the breast is yucky - the profile view reminds me of the tip of an elephant's trunk. The swelling has caused the reconstructed nipple to practically disappear into the incision because the areas above and below the incision swell and hang over the incision line where the nipple sits.

OK and that's just what's wrong with how it LOOKS. I haven't even mentioned how it FEELS - UGH. I feel like my left armpit is being held up by a meat-hook that's being tugged on and causing a pulling/twisting feeling of the breast.  Three days ago Bob pointed out to me that I had been walking around nearly 24/7 with my right hand in my left armpit and/or stroking my left side around the clock (to try to move the fluid out of the breast and down to my side).  I can only imagine how it must have looked as I walked around Trader Joe's and Whole Foods last week with my hand in my pit or on my breast without me even realizing it at the time ;/. But it just feels terrible all the time - it felt yucky or "gunky" as I often describe it before, but now it feels worse.   As of this morning it feels a little better than it has this past week but I wonder if that's because I know I'm marching into UCLA today to get some options/answers.

Frankly, I'm sick of this process. I want to be done. I want to move on with life and not be subjected to all of these surgeries and not have this daily reminder (aching, swelling, etc) that my life has been forever turned upside down by cancer. I told Dr.C during my pre-op appointment that if this one doesn't do the trick, I'll probably ask him to take the implants out and forget about having breasts.

But here I sit, sobbing like a baby knowing that if I opt for NO breasts I'll be just as sad and distraught as I am about having an ugly breast that aches 24/7.  I also know that the alternative between those two probably

I'm trying to not make any assumptions about any of this  and you can see my mind is already racing about all the things that could happen if we start over on the left side but I'm terrified that the next decision I make about this will forever change things for me/us - of course it could be for the better, but it could also mean for worse if complications arise.  I fear that I would choose to start over on the left side and have complications that would negatively impact my health because I wasn't willing to put up with an unpleasant appearance that could be hidden with layered clothing and prosthesis (which are not cheap nor comfortable).  It's just all so emotionally confusing and overwhelming so Bob is coming to this appointment today. I need him to be there and hear ALL of our options, pros/cons, risks, etc.

Please pray for guidance for this decision...that God will lead us to make the right choice and that I'll be at peace with it and able to move forward and focus on more important things.

Thursday, March 17, 2011

Cancer Chic Wear

My dear friend, Randi, whom I've known since we were kids, is a breast cancer survivor who has put her creative talent and passion for helping others into creating a business making hats and scarves for women going through treatment.  Randi discovered, like so many of us did, that run of the mill scarves and hats may have worked OK but they didn't do much to make us feel beautiful when we didn't have any hair. 

Randi's products are beautiful and it's no surprise to me since she is a beautiful person, inside and out.  I wanted to share her website with you and encourage you to check it out if you're in treatment or know someone who is. I know you'll love her work and hope you'll consider buying her products for you or a friend.  

When I was first diagnosed, Randi's cousin Kori who is one of my very best friends since childhood called me and put me back in touch with Randi who helped me get through the initial phases of deciding my treatment path and getting through it all.  She knows how to give back and I'm so grateful for it. I want to help her too so I hope sharing her website does indeed help her.  Love you, Randi and Kori! :)

Click below to visit Cancer Chic Wear by Randi
http://www.cancerchicwear.com/

 Great job, Randi! Seriously, beautiful work!

Sunday, March 13, 2011

Living with lymphedema

Lymphedema blows. Don't get me wrong, I'll take it over cancer any day. But, having lymphedema does suck as it interferes with life every single day. I am not able to lift or do repetitive motion with my left arm without fear of causing it to blow up like a balloon. I can't have blood pressure checks or needles in that arm EVER. I have to wear a compression sleeve 24/7 and at night I wear a special padded sleeve with a compression sleeve over top of that to help aid in channeling the fluid up my arm and down my side.  I have to sleep on my back or my right side - if I fall asleep on my left side or roll onto that side my arm and hand will go numb within a few minutes and that could also lead to fluid build up.  I have to take my wedding rings off before bed and before any type of exertion or exercise so that if I flare up they won't have to be cut off of me if the flare up is really bad.  Edited to add: I also can not get into a sauna, steam room, or jacuzzi because the high heat involved is a risk factor for flare-ups for both those with lymphedema and those at risk for it. That's a bummer because I used to enjoy occasional spa visits - now I have no reason to go to one - the money I save by not going to a spa only gets spent on lymphedema management garments and therapy. ;(

When I have a flare-up, my arm swells up and I can't just carry on as usual - I have to see a lymphedema physical therapist trained in manual lymphatic drainage massage 3 times per week and get bandaged in stiff bandaging (with foam underneath) for a 2-3 week period - bandaged from knuckles to shoulder with several short width bandages that are put on and taken off only for bathing and then put back on again. This has to be done to get the excess fluid out of the arm as much as possible as stagnant fluid can cause infection and can harden up.

Why do I have this? Because I had 17 lymph nodes removed during my bilateral mastectomy and the remaining nodes and channels were damaged by radiation therapy so my left arm has no healthy channel for filtering and dispersing the fluid that naturally occurs and moves through the arm and through the lymph nodes and vessels to the rest of the body. About 1/3 of women who have lymph nodes removed will develop lymphedema. It can happen at any time - 5 days or 5 years or even decades after surgery - even if you take all the recommended steps to try to prevent it.  If you have radiation therapy as part of treatment, you become something like 3x more likely to develop lymphedema because of the damage radiation does to nodes and channels in the radiated areas.

Since I have to wear a compression sleeve around the clock, I have to have several of them. They only last 4 months with daily wear because they have to be washed daily as the natural oils from the body break down the elasticity of the compression fabric.  They cost, on average, $75 per sleeve. I keep 3 sleeves at a time, and because they are sold by specialty medical supply stores which generally don't participate in health insurance groups they are almost always out of network and subject to the out of network deductible that I never fulfill because the rest of my care is always within network. 3x$75, 3 times per year, plus the sleeve and padding and bandages for night time wear and the arm garments alone run me $1000 per year out of pocket.  The therapy, when in network, is $30 copay per session, so flare-ups (I generally have 2-3 per year), costs me another $1000 out of pocket per year.

I haven't even mentioned the "gunky" feeling of having my left arm and left breast be swollen and bigger than my right side all of the time. For me, that's the worst part of lymphedema. It causes aching and a general yucky feeling all of the time.

I am incredibly lucky that there is a wonderful lymphedema therapist within a 40 minute drive of my home - she's the best in the state and trained by the most prestigious school for lymphedema therapy and management. She is a delight to work with and very compassionate and understanding.  She has shared so much knowledge with me to help me understand the lymphatic system and the types of treatment that are effective and the types that some PT businesses use which are harmful so I'll know what to avoid too. Love you, Richelle!!! :)

I'm also very lucky that this is effecting my left arm and not my right side which I rely on for writing and other tasks where I favor my right hand/arm.  Praise the Lord!

Anyway, I brought this up for a couple of reasons - first, a few friends of mine are just beginning their breast cancer journey - surgery, treatment, etc. - and they'll need to get up to speed on their risk for lymphedema and how to prevent and/or manage it if it occurs, and secondly it is time for me to replace all of my sleeves (wallet is weeping LOL) so it is on my mind more than usual this weekend. 

If you would like to learn more about lymphedema, there's a great organization - the National Lymphedema Network - and their website is: http://www.lymphnet.org/

Feel free to comment here or email me with any questions about this. It'll be part of my journey for the rest of my life now that I have it (mine is considered irreversible but in some, though not all, patients if it's caught early enough it can be reversible). 

I hope you are having a blessed Sunday!

Love,
Julie

Tuesday, March 8, 2011

Obeying

Some days I think gosh I've been through so much I deserve a break from this nonsense (cancer) and then I wake up and realize I was given this gift (did I say that out loud!?) so that I could spread God's great news and help bring hope and healing to others the way the Lord brought it to me in my darkest hour.

I have a calling that needs to be fulfilled and much to share and it's time to focus and be obedient.  That's what has been on my mind as I make mental plans to make time on my crazy schedule to get going on this most important project of mine.  The Lord knows I'm gearing up and He is turning up the heat and putting one opportunity after another in front of me to get me thinking about and planning for this project.  No more excuses. It's time to get down to business.

Meantime, I could use your help.  Please check out the new page on my blog about funding the cure and please consider helping in one or more of the three ways listed.

Please also pray for Amanda's quick healing from surgery (which went well, by the way - Praise God!) and transition into treatment, and please also pray for my new friend Gayle's upcoming surgery and treatment too. Thank you so much!

Reminder - I co-facilitate a Christian cancer support group in Santa Clarita at noon on the third Sunday of every month at NorthPark Community Church. If you'd like to check it out or learn more about it, please email me or leave a comment :). 

And, yes, I'll share more about my project later ;)...gotta run for now.

Monday, February 28, 2011

Prayers for Amanda

Dear friends and family,

Amanda, a close friend of mine, is having a bilateral mastectomy and reconstruction this Friday as the first big step in her treatment for breast cancer.  I ask you to please pray for her and her family.  Please pray for a smooth, complication-free surgery that eliminates all traces of cancer from her beautiful body, and for a smooth and successful transition from diagnosis to treatment stage for her and her family.  Please pray that she has all the support she needs to meet the demands of her children so that she can focus on getting cancer-free, and for her husband and children to have the strength, patience, and understanding as they move into this phase of the process and encounter a new normal for a little while until treatment is completed and they can resume a nicer new "normal" life once again.  Thank you, my prayer warriors, for praying for Amanda!

For Amanda -- Below are verses that were given to me when I began treatment, before I was even a saved believer. A couple of them were on index cards, the others were on gift items like a little plaque and a bookmark.  I stared at them, as I laid in bed recovering from surgery and they struck a chord with me. I hope they provide you and others some comfort on your own journey. You are in my thoughts and prayers daily!

With gratitude,
Julie
xoxo

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."

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."

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

Jeremiah 29:11 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."