Monday, July 4, 2011

DIEP FLAP Surgery & recovery

It's so unlike me to have so much time pass since surgery - nearly a week ago now (6/28) without a blog post. Every time I thought about blogging about it I began to get sleepy and fuzzy from the morphine and decided it was best to wait until I had a clearer mind.  But, the last time I delayed blogging about the results of a surgery it was because I was mortified about the results and didn't want to face it or admit it.  Praise the Lord this time it purely was a need to find a concentrated amount of time that I'd be awake and alert enough to give a coherent report.


Last Tuesday I was driven to UCLA at 4am by my dear friend and neighbor, Clare. Thank you, Clare! You are an angel and made Bob's day so much less stressful by allowing him to stay home and keep Cooper on his normal morning routine, getting him up and fed and off to daycare at the normal time before heading to the hospital.  Yup, my call time was 4:45am even though my surgery wasn't until 7:30am.  Once I was in the pre-op area, things moved slowly and really caused me to wonder why they drag us out of bed so early when their staff aren't ready to move things right along as soon as we arrive. Then I remembered how wonderful every surgical experience has been there (and I've had MANY) and thus they are the experts and know what they're doing so I should stop questioning and analyzing every little process. I just can't help myself though - that's what I do for a living (improve processes and service delivery) ;).  Part of me reverts to analyzing things from that perspective due to it being my job at work, but I think I jump into that mode quickest when I'm nervous.


Why would I be nervous? I haven't been nervous for most of my surgeries. In fact, I think the only one I've been nervous about was the first one when I was saying goodbye to my natural breasts in June 2009.  A bittersweet farewell since I was thrilled and anxious to get that cancer out of my body but knowing that my life was forever changed with challenging treatment and odds to overcome ahead of me so then it wasn't so much anxiety about the surgery itself but rather the fact that the surgery was step 1 of a long haul I was about to endure.   This time, I was truly nervous about the actual surgery, for weeks leading up to it.  I knew in my mind why I was doing it - to improve the way I look and feel after the radiation screwed up my left side reconstruction - but I had gnawing doubts and worries that I would still be unhappy with the results afterward and regretful that such a major surgery (with all the related risks) was done for a cosmetic purpose.   What if something went wrong and I had put my family's stability in jeopardy for something that was not absolutely necessary? Every time my mind "went there" I would redirect it back with reminders of how my body felt - jacked up, clamped down upon, uncomfortable 24/7, sometimes painful, and how I looked - deformed, asymmetrical, and damaged.  


But for the weeks leading up to the surgery date, my mind was a battlefield firing back and forth about these points of view until finally, the final week and days before the 28th, I found more peace than ever about it upon praying for such peace.  It helped immensely to hear the opinions of my dear friends who have been through breast cancer and reconstruction and they agreed that I had a right to feel as normal as possible and certainly to be without the discomfort I was experiencing, and to get the best aesthetic results possible. And if the flap operation was the only way to do it then that's what I needed to do. My survivor friends who are also work colleagues helped me get over the feelings of guilt I was having about doing this during our busiest time of year at work by reminding me that it will always be busy at work and I lined up my coverage and am honoring my family (who must come first) by doing this now before the new health insurance plan year would start so that I could avoid incurring another $3,000 in debt since we're still paying off medical bills from the FY11 plan year.  I thank you, my friends, for helping me find the peace I needed to have before entering the OR last week. Amanda, Jessica, and Michele - thank you so much for standing by me and helping me on my journey while you are still walking yours.


I swallowed my fears and turned on the humor as I went through the maddening question factory with every hospital staff member that came to talk to me. Confirming my name, birthdate, UCLA ID number (which sadly I use more frequently than my SS#), and then I'd look for a new way to get them smiling so they'd have some connection with me in the OR when I was opened up and vulnerable. No, I wasn't expecting to have a deep connection with them, but I firmly believe that a positive connection of any kind with your healthcare providers is critical to the successful outcome and my approach to surgery has worked every time. They often ask me what kind of music I like (even though I won't hear it) and when they do I tell them I like whatever makes them feel happy and effective.  They always ask me to confirm what procedure I was having and this time I'd tell each of them I was having the DIEP flap on the left side with decapsulation/elimination of the implant, aka "booby mulligan" and that usually got a laugh or at least a smile.  With Dr.C I already have the connection established. He's a compassionate guy and really cares about patients. When he came to talk to me to go over the procedure and ask me if I had any questions I immediately focused on telling him I have no big questions that he hasn't already answered and that I have faith in his abilities and that God will use him to bring me restoration.  I noticed he had been limping when he entered the room and asked him what happened. He said he walks that way every week from Sunday night to Wednesday because he's playing in a soccer league and "is old now". I laughed and said if he's old then I'm ancient because he can't be much older than me and I guessed 40. I was right.  I laughed and said it's funny to think that there could be jokester/hoodlum types that I went to high school with that could be performing life changing operations on people in hospitals today. He laughed and agreed.  He mentioned how many of these operations he has done and I told him I knew that already and that's why he was my surgeon. He asked me where Bob was and I told him he'd be along a little later and he mentioned that my life as a pilot's wife is likely similar to his wife's life as a surgeon's wife since he's also barely ever home and how lucky our kids are to have moms like us who are independent and courageous and just do what needs to be done.  My lingering fears slipped away even before the anesthesiology resident started my IV and provided some calming medication just before I was wheeled off to the OR. I laid there silently while praying for the Lord's protection.


The operation was 8.5 hours long. Dr.C and his team worked first on decapsulating and removing the left implant, cleaning out the cavity where it sat, and putting the muscle back down which formerly had been cut and reshaped to hold the implant in place.  He then searched for blood vessels in my chest that could receive the new tissue and guide him on whether he'd need to take any muscle from my belly or if there was sufficient vascular structure that could allow us to spare the tummy muscle (thankfully, my belly muscles were spared).  Next, they moved to my abdomen and cut me open there. The incision runs from hip to hip - approximately 3-4 times the length of my c/section scar, just above the c/section scar line. They worked to disconnect the blood vessels feeding a large section of fat and skin and then removed that tissue and transplanted it to my chest and connected each blood vessel, one by one, like a true transplant operation. It's called microsurgery, and it is Dr.C's specialty.  At some point when the transplant was done, my remaining abdominal skin was pulled down tighter (since a 4 inch high strip of skin was removed and placed up on the left breast) and closed up. A new navel was created since the original one would be strangely placed if they left it alone.  Surgical drains were placed - three of them. Two come out of my lower abdomen and one comes out of my left side at the breast level.  


I don't remember being in recovery or being brought to my room but I'm told that I sang the whole way from recovery to my room - apparently I sang full and complete lyrics of some pop song that Bob didn't recognize.  Sometimes I'm amazed that Bob doesn't videotape these moments but then I think he's brilliant not to because I probably would feel so humiliated knowing the extent of the silliness that it would likely feed my anxiety/fears about future procedures if I knew how embarrassing I was as I came out of anesthesia.  


I love that UCLA has only private rooms. The hospital is really new since they rebuilt it 3 years ago and it still looks new and so incredibly clean and fairly modern in design.  The staff are topnotch most of the time. The first team of nurses were on their game and I was given the run-down of how my recovery would go while there. Hourly checks - yes, hourly! - of the blood flow in the newly constructed breast, using a doppler machine. Vital sign checks would be every two hours (not the usual 4), so I wouldn't be getting much sleep. The morphine drip was self-controlled with a button which would release a dose every 8 minutes as needed.  At one point I set my iPhone timer to tell me when to press the button because I couldn't tell the difference before or after and when I told my nurse that she said that meant I needed a higher dose and it was increased.  I would have the morphine machine from Tuesday night through to Friday which meant I'd also have the catheter that long.  I also had a temperature gauge attached to the breast and had to wear a "bear hugger" blanket which is an inflated blanket filled with air at the right warmth to keep the breast temperature at the right level due to the newly vascularized/transplanted tissue.  I also had the leg compression devices on both legs to keep blood circulating in my legs to prevent blood clots, plus the three drains dangling out of me. I was literally tied to the bed from Tuesday through Friday night.


I got to take a peek at the new breast almost right away since they had to access it to monitor the blood flow with the doppler. I used my iPhone's reversible camera as a mirror and I was so nervous to look but then so thrilled once I did. The yucky hot and puckered and thick skin was replaced with soft and supple skin. The old grossly indented scar was gone. Instead there was a beautiful and full breast with soft and healthy skin! And, I could already feel the difference as I no longer felt that "jacked-up, meat hook" feeling I walked around having all the time.  I was amazed. And - my left arm, the one with lymphedema, actually looked and felt smaller too!  I might have been imagining that but then the next day Bob noticed it too!  


My recovery has been amazing so far. The nurses and doctors and the occupational therapist could not believe how well I tolerate surgical incision pain and how well I was able to move from the bed to the chair each day when they began having me practice getting up and about.  Not a single moan or wince when getting off the bed.  I actually surprised myself how little pain I felt. The occupational therapist said I was the easiest patient she has EVER had. :)  The only reason I'm still taking pain medication at home is because of the drains which are so incredibly irritating. Once these suckers come out I won't need pain medication anymore because my incisions don't hurt. I'm telling you that God is the ultimate healer and He has had his hand on me through this surgery and recovery.  There is no other way to explain how a person could have an incision across the entire front of their abdomen plus a football shape incision over the left breast and have no pain from that!  God is so good!


Like I said, the drains are brutal. They hang out of my body and are stitched in place but they move about and rub against the incision they come out from and that is painful. I try to keep them from moving by wrapping them with their tubes with ace bandages on top of the abdominal "binder" I have to wear over the bandaging down there but that shifts when I move at all so it's not a perfect solution and I'm staying on schedule with the medication to dull the pain of that.  I'm praying for these drains to come out asap this week. Doc said they need to have output below 30cc each one but preferably 25cc. Every day for the past three days it's been steady at 13-15cc, 28cc, and 28cc.  I hope today's output will be lower so that tomorrow I can convince his office to give me an appointment on Wednesday to get them out because I just don't want to wait till Friday. I can't wear any underpants or normal clothes with the drains in place because two come out from the top of the pubic line. I have to strap everything to me with the binder and ace bandages over top of that and then just lift PJ bottoms up over top of that.  Bob said I'd never get through an airport like this because the scanners would reveal images that would look like suicide bomber with these bulbous drains attached to tubes strapped to my body.  Between that and my hunchback posture (required for these first two weeks to move while bended at the waist), make for quite the look haha.  I had started out using "house coats" with snaps and pockets but the pockets were too shallow and the tubes were hanging out too much and getting caught on things as I'd try to walk through the house - far too risky LOL.  No showers/baths until the drains are out - another reason I want them out asap.  So tomorrow morning, when Dr.C's office opens up first thing in the morning, I'll be on the phone begging for a Wednesday appointment to get them out. 


I've been home since Saturday afternoon and was so happy to come home, knowing I'd get more sleep here. Funny because past surgeries it's been the opposite situation because Cooper didn't sleep through the night until recently (even now it's not consistent) but the four hour vitals checks allowed more sleep than I was getting at home. Not this time with the 1-hour and 2-hour checks I had to have during my stay I was in a state of major sleep deprivation while on major pain medication - not a great combination.  At home I get great naps and can rest at night while Bob is home and taking care of Cooper and allowing me to rest and recuperate.


Bob has been AMAZING. I'm so blessed to have such a supportive husband. I love you, Bob!


I had some wonderful support and visits from dear friends while I was in the hospital. My dear friend Tara picked Cooper up from daycare Tuesday night and entertained him till Bob could get home after ensuring I was settled into my room and comfortable - thank you, Tara!  One of my pastors came to see me and pray with me - thank you Pastor Bob!  My dear beautiful friend Jessica, a warrior sister, came and brought me awesome organic fruits and a smoothie and visited with me a while. Thank you, Jessica - I love you! My dear friend Sabina, another warrior sister, also came and brought organic fruits and beautiful flowers for my room, and a pretty prayer journal and smoothies for lunch and dinner on Thursday since the hospital food was not appealing to me at all.  Thank you, Sabina! It was so awesome getting caught up with you and you look fantastic!  My dear friend and neighbor, Clare, who drove me to surgery Tuesday morning came back later in the week to see me and bless her heart she came in and found me asleep and didn't want to wake me so she left a card on my table which put a smile on my face as soon as I woke. Sorry, Clare, but thank you! xoxo.  And, Dr.C's assistant, Marine, came to see me too and brought me some yummy organic berries too! She's such a wonderful person and a joy to work with when scheduling appointments and talking through options and pre-op and post-op stuff. She picked up my state disability paperwork to help Dr.C get it completed and submitted for me for the few weeks that I'll be out recovering.  And, of course Bob came each day to bring me my favorite bottled waters and blueberries and such.  And all my lovely friends and family that live far away who sent their well wishes to me via email and Facebook all helped me keep my spirits up during the hospital stay.  On the second to last day there, I met another survivor in the hallway as I did my daily walkabout and learned that she lives near me and had just had her mastectomy and started reconstruction.  We exchanged info to hopefully stay in touch.


I had mostly wonderful nurses - two in particular really will stand out always as the model of outstanding care and service - Sheila and Margaret - thank you so much!  Eunice and Marilyn were also excellent and I'm so grateful for their dedication and care.  Maria in housekeeping is such a lovely woman who made me smile. These are the true heroes in the healthcare field.  I had a few poor performers cycle through during my stay but I'm relieved they were the exception and not the rule.  I frequently gave my testimony and credited God for my fast healing and was thrilled that opened the door for some staff to share that they too were Christians and we talked from time to time about the challenges of balancing the desire to witness with the need to adhere to professional rules in the workplace and about how when that door is opened to talk about it, it brings joy and relief so that they can provide additional support to patients in the form of prayer.  I brought some beautiful small wooden crosses with verses printed on them as gifts for the caregivers that went above and beyond the call of the job to show me compassion and understanding. I gave out 4 or 5 of them and also gave away my clay comfort cross that is designed to fit perfectly in a clutched hand. Every one was received with joy and not a single person hesitated or indicated any level of offense or disinterest which was a relief and a blessing.  God's hand was on me and all of us during my stay - that was clear from the start.  


Thank you, everyone, for your support and kindness. I'm excited to finish recovery and get back to the normal routine of work and fun and travel. ;)  For now though, I will follow doc's orders and rest as much as possible. Limit my activity. No driving for 4-6 weeks. No lifting anything over 5 lbs for 4 weeks. No raising my arms above shoulder length. No caffeine for 2 more weeks (ouch) - including no chocolate (ugh). No pressure on the breast of belly (back sleeping only) for even longer, probably a few months. Need to start a high protein diet to enhance the healing process. No bathing til the drains are out (except sponge baths). Once the drains are out I can start to slowly add daily walks to my routine, gradually increasing the length and speed but keeping it low key for the first few weeks. Get plenty of sleep and rest because I'll be more tired than usually while my body is healing.


Thank you, father God, for keeping me safe and healthy. For sending angels to care for me and infusing them with compassion, skill and resources to surround me with support. I'm so grateful and give you the glory and credit for my amazing recovery. Amen.


Love,
Julie


Psalm 30 (NIV)

 1 I will exalt you, LORD,
   for you lifted me out of the depths
   and did not let my enemies gloat over me.
2 LORD my God, I called to you for help,
   and you healed me.
3 You, LORD, brought me up from the realm of the dead;
   you spared me from going down to the pit.
 4 Sing the praises of the LORD, you his faithful people;
   praise his holy name.
5 For his anger lasts only a moment,
   but his favor lasts a lifetime;
weeping may stay for the night,
   but rejoicing comes in the morning.
 6 When I felt secure, I said,
   “I will never be shaken.”
7 LORD, when you favored me,
   you made my royal mountain[c] stand firm;
but when you hid your face,
   I was dismayed.
 8 To you, LORD, I called;
   to the Lord I cried for mercy:
9 “What is gained if I am silenced,
   if I go down to the pit?
Will the dust praise you?
   Will it proclaim your faithfulness?
10 Hear, LORD, and be merciful to me;
   LORD, be my help.”
 11 You turned my wailing into dancing;
   you removed my sackcloth and clothed me with joy,
12 that my heart may sing your praises and not be silent.
   LORD my God, I will praise you forever.

14 comments:

  1. Julie,
    So glad to hear that you are doing well. Drains are so uncomfortable, and just so nice when they are removed. I am praying with you each step of the process. Please get some rest (with a 3 year old - hahah) and know I am praying and thinking of you! I admire your strong faith and bravery.

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  2. Thank you, Jen. I admire your strength my friend - I know you too have been through great trials with your surgeries and recovery and everything. You too are often in my prayers. xoxo

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  3. Julie, so great reading this, you are very brave. I too had breast cancer. Diagnosed in 2008, bi-lateral mastectomy with immediate reconstruction using expanders. Chemo, radition and then implants put in. Left one rejecteed within 4 months, severe infection, left implant removed. Now finally in 2 weeks i will be having DIep Flap surgery. I am so nervous both because of the extent of the surgery - i am having both done so they said about 11 hrs. And nervous about yet another major surgery where i wind up disappointed with the results...your story gives me courage and inspiration!!! Thankyou so much for sharing!!!

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  4. I am about to undergo this surgery in about a month from now. Your positive attitude is inspiring. I am having a booby mulligan too, so to speak. It's been 16 years since my bout with cancer and I have wanted to be balanced every day since.

    Fortunately, I am now in a position to have this surgery. I hope my experience is as successful...God Bless

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  5. Julie, you inspire me. I am a 30yr old woman recently diagnosed with breast cancer. Your story gave me a lot of insight into what to expect after the DIEP surgery. Most importantly, your praise and worship tells me that God is always at the wheel and I can get through this! Thank you sooooo much for sharing your story...

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  6. Thank ypu for sharing ypur story and your faith. Good blessed you greatly. I will be having my Diep flap 7/28. I'm very excited. Stay strong in the Lord and we will glorify and praise him. God is good all the time.

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  7. I just went thru this surgery on the 16th of july. I had both breast done.These drains are horrile i cant wait until they come out so i can lay how i want to lay in bed. You are so correct the drains are more of a pain then the actual surgery areas. never thought at the age of 31 i would have to go thru this but i have made it this far and i will continue on. Im content with the results of my surgery althow i need a bit of shaping done.

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  8. I am having my Diep surgergy on August 22. Thank you for your blog - I had no idea about how irritating the drains would be or not being able to wear underwear! What did you do when you had a doctors visit? What type of pants did you wear? Someone suggested maternity pants with the hole cut out.

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  9. Thanks Julie for your extensive review of this surgery. My DIEP is Dec 19th. I was anxious, but you gave so many details...God is faithful to give us what we need. I needed information! After 3 rounds of B Cancer...I am ready to get on with this. Pray I am home for Christmas please. Drains or no...I wanna be home. Blessings Debbie in FL

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    Replies
    1. Debbie, I'm so happy my post could help you. I will be praying that Jesus guides the surgeon's, nurses', and others' eyes, hands, and heart throughout your surgery and recovery. May God's healing light and love fill every nook and cranny of that beautiful body of yours and bring you restoration and peace. May He bring you safely home in time for Christmas. In our precious savior's name, Amen.

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    2. Debb I am having a bil. DIEP flap surgery Feb 18th after BMX w/tissue expanders, chemo, and radiation to the left side. I had exchange surgery in July but developed a severe infection and the left implant had to be removed then the rt side 4 days later. I did not know the failure rate for silicone implants after radiation. Anyway this is my last hope for reconstruction, I'm nervous about the lengthy recovery and to be honest the results... I guess its vain but I just want to feel normal again, whole.... Thanks for your posts it helps to hear from others who have been there.

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  10. Christine LautenbachFebruary 17, 2013 at 3:42 AM

    Julie your story has so encouraged me on my journey from being diagnosed with breast cancer [rt breast] in July 2012. Thank you for sharing your walk of faith.

    I live in Cape Town South Africa, and I am just through with chemotherapy. Now have Herceptin treatment every three weeks until Oct 2013. I have been supported and loved by the Lord every step of the way as well as by an amazingly supportive family and Christian family. Their faithful prayer has meant everything to me along the way. God's love is so amazing and at the outset of this journey He gave me Isaiah 43:2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. So great is His love for us all. What an awesome God we serve for His grace and mercy cover us every moment. He also gave me Psalm 91 which has given me so much hope, sustaining my faith continuously. Every woman who travels this road needs to experience and know the love of Jesus for He intimately cares for us. He is our healer and I believe that I am healed.

    I had my skin saver mastectomy and expander bag fitted on 7 Aug 2012. I will be having my DIEP flap reconstruction surgery on 28 March 2013. Julie, your story has allayed a lot of my fears and confirmed how much I just don't want those necessary drains! Julie, along with what I have read and researched you have given me so much hope for a 'normal' looking body and have allayed several of my fears. I am encouraged that the Lord because of his great faithfulness will carry me through all the way into a great future with a testimony of His love. I do so want Him to be glorified.

    My plastic surgeons here in Cape Town are very experienced in doing the Diep flap so I am expectant of great results. Could ultimately look like 'Barbie Doll'.

    I have a married daughter who lives in Acworth County Georgia. Would love to meet you Julie when next I am in USA. My sister and brother live in Maryland, Washington DC so I have connections to USA.

    May you be so blessed as you travel on Julie.
    Christine

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