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.

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

Infused, felt up, thumbs up! Long update

This morning I went in for my first Zometa infusion. It went smoothly and was much quicker than chemo infusions were - just 30 minutes. ;) However, anyone that knows me knows that I can't go to the cancer center without finding sister warriors to chat it up with and of course catching up with all my favorite nurses. I updated Dr. Barstis on the Zometa coverage (that it's covered by my prescription benefit plan) and he was thrilled. I also mentioned that one of my friends back east got hers covered based on getting a bone density test that revealed her as having osteopenia (precursor to osteoporosis) which is pretty common for post-menopausal women (which I now am - have been menopausal since chemo began in July and will be from here forward since the ovaries are coming out next month). I swear that I saw him mentally kicking himself as the words came out of my mouth and he immediately agreed we should get me in for the bone density test since I very well could have that situation and then the administration of the Zometa would be covered as well. So tomorrow I call the imaging center to see if I can get in asap to have that quick test done. Thank you, Anne, for sharing that very helpful information with me this morning :) One of my favorite sister warriors was there - a beautiful woman named Theresa - with her hubby who has been there every time I've seen her there. I'm so thankful to God that He has blessed Theresa with such a supportive and loving husband. I always enjoy talking to them both when we are there at the same time. Today I gave Theresa one of the pink bracelets that my awesome friends Nicole and Diana had customized with my blog address on it - my sneaky and amazing friends were selling the bracelets in the early days of my diagnosis to help raise money for my out of pocket medical expenses (thank you, ladies - I love you so much!). During a recent road trip and visit to see Diana and her family in Arizona Diana gave me a big stash of the bracelets to take home with me so I put a few in my goody gift bag that I bring to every doctor appointment. Why am I jabbering on about this?...well I was thrilled to get a blog comment from Theresa just now since she saw the blog address and came to check it out. We've chatted during our visits to the cancer center but had never exchanged contact info and now she knows how to find me and she has a great blog too that I can now follow. I thank God every day for blessing me with the many gifts He has given me including allowing me to meet so many wonderful people on this crazy journey. Theresa is battling a recurrence of triple negative breast cancer. Please keep her and her family in your prayers. I asked Dr. Barstis to examine me to feel for anything in my nodes under my arms, across my chest and in my neck. Most times that I'm there he pulls up a stool next to the chemo/infusion chair to chat with me and I hardly ever was examined during my 6 months of chemo but my sister warriors who were being treated elsewhere were being examined at every single chemo infusion. I was only getting checked if I expressed a concern or mentioned a funny feeling. I was put in a private room and Dr.Barstis checked my neck, shoulders, my armpits, my sides and the top of my back and said he didn't feel anything abnormal. Sigh of relief there because I was telling him how I sometimes feel little pea sized bumps on my chest and it just freaks me out. He told me that I should just call and come in to be seen any time I feel something that worries me rather than wait til a scheduled appointment. I assured him I wouldn't wait it out if I wasn't going to be seen within a couple of days but he said I shouldn't have to even wait that long and worry myself sick. I agree. ;) Before leaving I asked how often I'll be scanned (PET/CT) and he said every six months the first year and then annually after that for the first 5 years. He told me that with triple negative the recurrence risk is high the first 3-5 years but that if I can just get past the 3 and 5 year marks without a recurrence I'm golden. My next PET/CT scan will be in August since I had one in February. After my visit at the local UCLA cancer center I headed down to the main UCLA campus in Westwood for my follow up visit with my surgical oncologist, Dr.Chang, who is the Director of the UCLA Revlon Breast Center. It's standard to have a 3-month and/or 6-month follow up with the surgeon but I hadn't been back since my 2-week follow up back in the summer. I saw the nurse practitioner first and she gave me a good feel up too - cool, twice in one day haha! I told her what I told Dr.B about feeling the little pea sized bumps and feeling panicked and how I've had to force myself to keep my hands off my body at night time since I end up laying in bed unable to sleep and not able to schedule a check-up since all the doc offices are closed at 2 am haha. She told me about their proactive follow up program and suggested I enroll. I would be checked by them every 3 months with a physical exam and get checked up on by the psychologists whom I know through the support group program and the physical therapist (for lymphedema) who I have also met and who works with the specialist I've been seeing. She said any time I have a concern or worry about something I feel I just call or show up and someone will examine me and act as needed. I enrolled and booked my first/next follow up appointment for 3 months from now. I saw Dr.Chang and she examined me too - that's 3 times in one day - woohoo! LOL ;) She reiterated what Dr.Barstis told me about the triple negative recurrence risk in the first few years. She said at 3 years without a recurrence my risk goes down by 80%! At 5 years it's another huge step down. She said that TNBC (triple negative breast cancer) mostly disappears not to rear it's ugly head again if you can get past that magic 5 year mark without a recurrence. Cool. I told her what I've been doing to reduce my risk - the lifestyle changes - avoiding chemicals/toxins, boosting immunity with major diet changes and the supplements that Dr.Hardy recommended, exercise and managing stress with meditation and relying upon my support network and my faith. I know this doesn't mean it can't happen - I know a number of women personally who currently are battling recurrences in spite of doing all they knew to do to minimize their risk too. There's no guarantees. But if I can confidently say that I'm doing everything we know of that may help then I won't have any regrets (or not many anyway haha). My big challenge at the moment is improving my sleep at night. Cooper had a great week of sleeping through the night last week but it has unraveled and he's up several times a night again. Ugh. I'm not sure why but it *might* be a return of (or new strain of) the stomach bug we all had because everyone we visited with in Arizona has since been sick with some strain of the bug and of course Cooper threw up on the way home from that trip and then again the other night so that might be it. I hope and pray that he returns to the good sleep pattern I had a glimpse of because I felt great when I was getting 5-6 consecutive hours of uninterrupted sleep. Now it's more like 2 hours at a time separated by Cooper screaming and making demands requiring intervention. ;/ I'm also trying to incorporate guided visualization meditation into my daily routine because I haven't been doing it often enough - have just been doing it when I am panicked or worried. And the exercise is progressing with longer and more challenging walks on a more frequent basis but I need to push myself harder to ensure I get my heart rate up for a full 30 minutes or more and do it 6 times a week instead of 3-4 times that I'm doing right now. One more bit of news to report. On my way home from UCLA this afternoon I got the call from the OB/GYN surgeon to confirm my next surgery date. I WILL be getting nipples and having a complete hysterectomy (removal of uterus, cervix and ovaries) on May 18th! I will also have them take my port out. I considered keeping the port for the Zometa infusions but since those infusions are just 30 minutes long and only every 3 months, I think I'll have it taken out so I can feel more "normal" again and can compare the feeling on one side of my chest with the other (when I check myself out it helps to compare both sides so that if they feel different there's more reason to question and raise a flag but if they're the same then that means less reason to be concerned but I can't do that on the level three nodes that are on the chest front because the port is in the way). I also feel that saying goodbye to the port is important to my psyche not just to feel more normal again but to say that I'm done and won't need it anymore. I don't want to keep it "just in case". Sure, having it would make Zometa infusions easier and less painful (though I plan to still avoid the pain by using numbing cream on my arm when we switch to that infusion location) - but I want the universe to hear me loud and clear that I am done with cancer and don't need this port for treatment anymore. Besides, Blue Cross better be grateful that I'll be saving them so much money by combining three surgeries into one - that's right, nipples, hysterectomy and port removal - each usually gets it's own surgery but I'm doing it all at once, lowering costs and reducing my exposure to anaesthesia. Oh yeah, I'm a warrior! LOL :) Big day! No wonder I'm pooped! Off to bed for me! But not before giving thanks and credit where it's due. Thank you, Lord, for this and every day. Thank you for the countless blessings you have bestowed upon me and my family. Thank you for the amazing care and support that I receive every day. Thank you for my incredible family, friends and everyone that you bring into my life. Thank you for revealing yourself to me. Use me, Father, to perform your will and purpose for my life. I am here, at your feet, with empty cups to be filled. Thank you, God, for loving me. Love, Julie PS - Dear cancer, I'm done with you. Goodbye.

Breast cancer sister warriors powwows

Every Thursday I go to UCLA to join other breast cancer survivors, currently in treatment, for what I like to call the sister warrior powwow. It's a wonderful support group with several women from all walks of life, and all types and stages of breast cancer represented. These women are amazing. They get it. I need them. I love them. Occasionally a few of us get together for lunch and laughs after our group meeting is over. This past Thursday we had a really good laugh when three of us walked into a restaurant, took off our hats and looked at each other and realized that we represented the three stages of chemo hair - gone while in chemo, just starting to grow back 6 weeks post-chemo, and the cute pixie cut about 6 months post-chemo. We had the server take a picture. As I was preparing to post this I realized that the three of us in the picture below are currently all the 30-somethings in the group. Love you, ladies!

Jessica, Julie, and Tira January 28, 2010

Tissue expander - implant exchange surgery: Update

Surgery went great today. We arrived at 7:30 am at UCLA to get checked in. On our way down the hall to the surgical center we ran into Dr.C and chatted with him briefly. I asked him about his recent trip (conference at a resort I spent a couple weeks at for work a couple years ago) and he gave me the quick low-down and we had a good laugh about a warning I gave him before he went (bed bugs at the resort). Although it's not the kind of thing he nor I probably needed to cause him to think about me while he was on his trip, I was able to give him valuable advice on how not to bring those buggers home to his family and it gave us something to laugh about the last couple times I've seen him. And, I'm thinking it's always a good thing if you make your doctors smile and laugh when you see them - especially if you'll be under the knife with said doctors so I'm always looking for ways to keep him and my other doctors smiling and laughing. LOL

I got called back for surgery prep so off we went (right on schedule, too). Got into that fashionable gown, paper hat and booties, etc. Saw Dr.C again and he marked me up with that lovely purple surgical marker and I got him laughing again - so much that he had to stop marking me for a second to avoid making squiggly lines heehee. Then the anaesthesiologist arrived and I got him to use my port for the first series of iv meds which was GREAT because that meant I was asleep when they put the next iv in my arm (right arm, of course). He gave me a tube of numbing cream and some cool cream holding bandages to take home with me (bonus! esp since I've been using press n seal wrap to hold my cream in place all this time haha) since I'll have my port another year for ongoing blood draws and a iv-delivered drug I'll be getting monthly for a year (more about that later).

We reminded every team member about my left arm - NO BP, NO NEEDLES - and we put a big long piece of surgical tape on my left arm with big lettering of that message to ensure nobody tried to mess with it - mission accomplished. Just after the doc put the first series of drugs into the port iv, I closed my eyes briefly and said a simple prayer: "Dear God, I give it to you. You have my complete trust and faith. Thank you for blessing me in countless ways on this day and every day." I opened my eyes and resumed talking to Bob and quickly things started appearing fuzzy. I woke up, looked at the clock in front of me, which said 11:30am (PT) and turned to Bob and said something like "gosh, when are we getting this party started?" and he laughed and informed me it was all done. =) Sweet! No nausea from the aneasthesia - yay! (my chart showed that has never been an issue for me at any of my previous surgeries and prior to this surgery the the doc mentioned it and was impressed - I told him I'm totally an overachiever and that got him laughing haha) The surgery went well and they wrapped me up in a lovely gauze halter contraption - the same style I had after the bilateral mastectomy. I get to sport this lovely fashion statement until Sunday afternoon and that is when I'm allowed to take it off, look at my new tatas, and take a shower. As I sat there in recovery I thought about how my breast cancer sister warrior powwow (aka support group) is on Thursdays from 11-12:30 at UCLA just one floor beneath the surgical center. I was thinking I should ask them to just wheel me down there to say hello but I know that Bob would think I was cookoo so I didn't say anything. Besides, by the time they finally got us out of the surgical center it would have been too late - but I was hoping I'd run into the gals on the elevator as they wheeled me down to the parking garage. Unfortunately, I didn't see any of them.

I can ALREADY tell the difference with the pesky expanders gone. I just felt under my armpits and can't feel them (could before), and felt the top of my chest area just below where my port is and can't feel them bulging out (could before) - this is SO AWESOME! Those things (expanders) took up so much chest real estate before and were so uncomfortable, I'm so happy they're out! Woot!

I was home by 2pm PT and felt pretty good - tired and hungry, but not in any pain (due to drugs, I'm sure). I had some soup and crackers and green tea and went up to bed. Bob woke me at 4pm to give me my next pain pill and I went back to sleep and woke up around 7pm to find Bob downstairs hooking up my new wii system! Bob and mom got it for me for my birthday and it arrived today while we were at UCLA. How exciting!

I still feel good, pain meds on schedule to ensure that continues. Cooper seems to be doing OK with me not able to pick him up. I sit down and someone else picks him up and puts him in my lap (with a pillow against my chest to prevent him from pressing on or knocking my incision areas). At bed time we did that in his room on the rocking chair and then when it was time Bob picked him up and placed him in the crib and I tucked him in and he was OK with that, thankfully.

Day 2 following surgery is usually the toughest, in my experience, so tonight I'm getting all the things I'll need arranged next to my bed so I can stay in bed and rest. Hopefully it won't be too bad since they gave me a full pill bottle of pain meds. Dr.H recommended a supplement (Bromelaine) for me to start taking tomorrow to help reduce swelling so that will go down quickly and allow me to keep my radiation simulation appointment in 2 weeks.

Thank you, God, for holding me and keeping me safe and comfortable - for instilling brilliance, talent and compassion in every member of my surgical team - for blessing me with a wonderful mom and husband to help me through this here at home - for precious Cooper - and for all the many friends and family members who continue to support me through this journey. For this, and many many countless other blessings, I thank and praise Thee.

To my friends, family members, colleagues, and blog followers - thank you all for your prayers and positive thoughts. I KNOW it helped because I had an excellent surgery experience today. Thank you to the UCLA team that took such awesome care of me today, as usual. I love Dr.C and the surgical center nurses - they're truly the best in their field as far as I'm concerned and I'm so blessed to have them as my care team.

Love,

Julie

PS - Here I am, ready for surgery - no make up, no brow pencil (though they're coming back quickly haha) - I'm au naturale! :)

Yesterday's big day at UCLA

Another novel-length post ahead (sorry!)...thanks for keeping up with me. I'll try to be more brief in the future - I just really like to give the details in hopes that it'll help someone else somehow. We had a great day at UCLA yesterday! Bob and I headed down there at 6:45 am so we'd have plenty of time to battle L.A. rush hour traffic and arrive in time for my 8:30 am requested arrival time for the big meeting with Dr.Glaspy. I mentioned in a previous post that Dr.Glaspy is considered the guru, the brilliant oncologist, often referred to as the best in the country. Often times, brilliance can lead to arrogance, ego, and/or other unpleasant personality traits but I'm pleased to report that is NOT the case with Dr.Glaspy! When he walked into the room, I looked at my notepad and saw my #1 comment/question for him "tell him not to give me statistics or predictions on life expectancy - tell him I will decide that" and remembered that telling this to Dr.Barstis was successful and set the stage for the discussion. But suddenly I held my breath and decided to let this brilliant guru speak first. I decided in that moment I needed to let go and trust him, to trust God for putting me in this man's office, and see where it goes. Thankfully, it was a wise choice. He didn't discuss statistics or life expectancy AT ALL. We got right down to the business of discussing the details of this cancer, where it was found, what it is known to respond to and not respond to, and what customized cocktail the guru would be recommending for me. We discussed clinical trials too. At this time I only "fit" into one active study for triple negative breast cancer and it's for a drug called Avastin which has shown success in metastatic cancers (including breast cancer). We discussed the pros and cons of adding it to my treatment and we decided it was not appropriate for me because it would eliminate the ability to use a set of known successful chemo drugs (platinums) because of the way the study is being done, and also because in another study Avastin thus far has showed no improvement for adjuvent use in patients with colon cancer (meaning, for those whose cancers had not metastisized to other parts of the body), and there's always the chance that a new drug could negate or lessen the effectiveness of the proven successful treatment that would be given along with it. Although I won't be participating in that clinical trial, Glaspy confirmed what I had read up on regarding triple negative breast cancer trials - that the rest of them are for those with metastatic breast cancer (Stage IV - thank God I'm not in that category), and some of the drugs being studied are showing great promise and could be available in 1-5 years (in fact, a story about one class of drugs being studied was featured on NBC Nightly News last night. Another that showed success with triple negative breast cancer was reported on at an oncology conference just this month. They're still in early phase trials but nowadays that could mean new drugs becoming available in as few as 1-5 years, buying time for many of us with aggressive types of cancer shown to have a very high rate of recurrance. Long story made not-so-short (sorry!), the chemotherapy regimen that I will be having is very aggressive. It was selected by Glaspy for me in response to me stating that my goal is to "blast this f*cker* and it's rogue cells into oblivion and beyond". Glaspy beamed and responded "You're going to do just fine." :) Here's the plan: 4 cylces of: Taxotere + Cytoxan (TC), PLUS 4 cylces of Carboplatinum + Gemcitibine (CG). The TC is given every 3 weeks, and the then the CG combo will be given in two doses on day 1 and day 8 then off for 2 weeks then repeat until done. After chemo is done I will have radiation (daily treatments for a period of 4-6 weeks). I can start as early as 10 days from now. I need to have a port installed in my chest because of I have only one arm that can be injected into and the treatment plan would destroy the small number of injection sites on my arm and be quite painful and risk infection and other complications that can be easily avoided with a port. Besides the port, the final drain from the breast surgery needs to be out before we start - it should be out Friday or Monday. We are really impressed by Dr.Glaspy- not just his brilliance in his field, but also by his "bedside manner". And, at the risk of sounding arrogant myself, I dare say that I think he was impressed by me too. Why? Well...he seemed to really appreciate my spunk, my determination, and I recall a moment where my smile illicited a great big smile back from him. He even expressed that he could tell I am tough just by the early decisions I've made (bilateral mastectomy instead of single, and by expressing a desire to have the ovaries out too). I remember another UCLA doctor telling me that Glaspy is brilliant but they also warned he is "factual", "to the point", "doesn't beat around the bush". When I heard that I recall thinking to myself that I normally appreciate and respect that approach more than any other but that in this instance, where my life is potentially threatened, such an approach could scare the crap out of me and whittle away at my confidence and warrior status. Glaspy was factual, straight-forward, and to the point, but he was compassionate, confident in my ability to kick cancer's ass, but realistic about the need for multiple plans for the future paths that we may find ourselves on depending on how this first war on cancer goes. We discussed many other things - the BRCA gene mutation test (which I had yesterday afternoon while on UCLA's campus - results take 2 weeks) and how the results might impact my decision to keep or remove my ovaries...I told Glaspy they're coming out either way - results will just help me determine whether it happens in the next 1-3 years or whether I wait a few more years beyond that but either way they're coming out well before I reach 50. We discussed my intention to take an integrated approach to my treatment/wellness - combining medical/conventional treatment with nutrition, supplements, exercise, psychological therapy, guided imagery, meditation, etc. and I asked him "am I missing anything that should also be on this list?" and he said "Nope, you've got it covered." Bob chuckled. I asked if anything is off-limits (food, beverage, supplements, etc.) during treatment and he said "No." I asked qualifying questions about that since I'd heard and read that antioxidants can interfere with chemo and he said that was hogwash and that the effects of anything like that I could possibly take won't stand a chance against the chemo regimen I'll be getting. Wow. I asked him who the best holistic practitioner was and he said Dr.Hardy (who I promptly got scheduled with - seeing her next week). When discussing who would install my port, he explained how easy it is and how any schlub of a surgeon could do it and he said "even (insert name of first surgeon I consulted) up by Dr. Barstis could do it." I laughed, looked Glaspy in the eye and replied "Dr.S is not touching me." He cracked up and said "I'm not a fan of him either". Bob and I joked with him and said that had he walked into the office and just said that alone we'd have said "you're hired". haha. We were pretty stoked by this additional affirmation of our decision not to have Dr.S treat met and to instead go to UCLA. :) Glaspy agreed it makes sense for me get his regimen locally at Dr.Barstis' office (yay, no ego or politics from this guy either!) - there's the lengthy chemo sessions plus the injection required the day after so commuting to/from UCLA for that is crazy and unnecessary (double yay!). That was all before 11 am! Haha. We were down at UCLA til nearly 3 pm. Besides meeting Glaspy I was checked out by a nurse who confirmed my drain must stay in a bit longer and that my swelling is normal and healing is on track. We collected key paperwork from the surgeon's office for disability and also for a Brain MRI that I'll have next week to cover all the bases for baseline knowledge of my cancer. We visited Dr.Hardy's office, got me on her calendar for next week, and got another giant pack of paperwork to fill out - filled it out over lunch and returned it. And lastly, we spent 2 hours with a genetic counselor detailing my family history and having my blood drawn for the BRCA gene mutation test and UCLA cancer registry for research purposes. You'd think after all that a person couldn't manage to fit anything else in. Well if we're talking about ME, you'd be wrong. ;) We left UCLA, ran a couple errands and then I walked into my dentist's office at 5:30 pm for a pre-chemo teeth cleaning! I'm not a fan of the dentist but this is a necessary step because chemo can wreak havoc on the mouth. After THAT, I was officially TOTALLY EXHAUSTED! LOL

We're at UCLA

We are at UCLA for my big day! We're waiting for the Admissions office to open (4:30am PT).

We are praying for a successful, complication-free surgery that eliminates all the pesky uninvited cancer cells from my body. We pray for the surgical team's strength, brilliance, skills, and compassion on this critical first day of my new life as a SURVIVOR of breast cancer. We thank God for His love, and for our amazing support network that is praying for me and cheering us on. We are grateful to all of you for your love and support. You know I will be on the blackberry as soon as I can be to post updates. :)

Cancer, YOU'RE GOING DOWN, BITCH!

Love, Julie