Sunday, December 18, 2011
It's been a very busy autumn; I've had lots of work projects, plus a fun new pink wig warrior project, for which I've been putting in lots of extra hours. I love the challenge and stimulation of these projects but I have not done a great job getting the rest and exercise I need to keep my immune system strong.
Cooper has been sick a couple of times and each time he's passed it on to me so I've been sick a couple of times all in the last few months. This current bout has been brutal. I've been in agonizing pain since Thursday night with a screaming sore throat, pounding head, aches and pains from head to foot, and a fever that just wouldn't quit. Friday morning at urgent care the doc said it was a virus but didn't test me for strep. Told me to go home and rest and keep up with the over the counter fever reducing pain meds.
I've been alternating ibuprofen and acetaminophen around the clock, neither even touching the pain, so last night I broke out the "big guns" and dipped into the left over Percocet from my big surgery over the summer and THAT didn't even help! I've been in bed since Thursday night, only getting up to use the bathroom, grab some tea or a snack, or say good night to Cooper, or head to urgent care.
This morning I went back to urgent care since I wasn't getting better and couldn't find relief from the throat pain. The doc took a look at my throat and ears and said I have strep AND a sinus infection - didn't even need to test me. He called in a high dose antibiotic and a cough syrup with codeine. I hope these work quickly to get me feeling better because Bob has to go back to work soon and then I'll be juggling Cooper, the animals, and work all on my own again. He's been so wonderful - taking care of me and Cooper all week and weekend. I'm so blessed and lucky to have such a caring husband. Thank you, Bobby! xoxo
I sure hope and pray that I am feeling a lot better tomorrow and throughout the rest of the week. There's much left to do to finish up work commitments and prepare for Christmas next weekend. Our new treadmill (which Bob and I gave each other for Christmas) will arrive later this week and when it does I'll be incorporating daily exercise into my routine to get me back on track with diet and exercise efforts. Exercise is so important for reducing one's risk of recurrence and also for the immune system overall. Besides, my clothes don't fit! LOL I need to lose about 12 lbs before my next reconstructive surgery mid-March. More about that later.
Dear Lord, my healer, my redeemer, please heal my body quickly and effectively so that I may resume plans to celebrate and serve You. Please allow the medicine to quickly eliminate the infections and bring relief from the pain so that I may tend to my boy and my work with energy and joy. Thank you, Lord, for sending me such a caring and attentive husband and for giving him the patience and will to take such wonderful care of me and our son while I have been ill. I'm so grateful for your mercy and love. In Jesus' name, Amen.
Friday, October 28, 2011
I checked in with the surgery center earlier than my call time because lately L.A. traffic has been worse than usual and I nearly missed my biopsy appointment on Monday due to awful traffic (a 30 mile drive took me 2 hours!). They took me in right away though and my surgeon was ready to go so I got to get in quickly, not before asking the check-in clerk to credit me with some "frequent flyer" points. OK OK so they don't award those but she smiled and replied "sorry, we're fresh out of those today."
In pre-op, I did the usual and tried my best to make everyone laugh and smile. I firmly believe that surgery goes smoothly and we're set up to be surrounded by the best possible energy when we connect with our care providers in a positive way. I have had umpteen surgeries in the past two+ years on this journey and my blog followers know it's paid off for me so I'm sticking with that philosophy. :)
It was a quick surgery, one hour, followed by an hour of recovery. I had general anesthesia for this lumpectomy. By the way, I never imagined I'd have a lumpectomy once I had a bilateral mastectomy over 2 years ago. However, it's an important reminder to all that even mastectomy surgery can not remove ALL breast tissue and about 1% is left behind. And, if you have reconstruction involving transplanted tissue (fat) like I had in June, that tissue also needs to be examined for abnormalities as well.
When I woke up, my surgeon informed me she is 99.9% sure that the benign biopsy results will be confirmed by pathology now that she's seen and removed the lumps. She said she's sure it was fat necrosis (dead fat) which makes sense given the timing and nature of my last surgery.
I was actually able to walk out of the hospital (first time I've done that after all the many surgeries I've had) on my own without a wheelchair assist and Bob drove me straight to Starbucks, followed by Whole Foods, so I could get my organic soy latte and something from WF's gourmet hot bar for lunch. I'm so blessed that anesthesia doesn't make me sick to my stomach and I can eat right away. :) Amazing blessing that is!
I'm home recovering well. No major pain. Just a little sore and tired. I'll be at church on Sunday and back to work on Monday. God is sooooo good!
Thank you for your prayers and well wishes!
Oh, and one other thing -- Bob surprised me this morning with the news that he nominated me and I was chosen as a finalist for an incredible survivor victory challenge contest!!! I'm one in three finalists! Will you please consider voting for me (by midnight Monday - winner to be announced on Monday)? Here's the link:
Please click here to vote for me in the Otterbox Survivor Victory Challenge
Thank you so much - and please, if you're inclined to do so, I'd appreciate you passing the link along. Our house and morale could use the TLC after two years of focusing our energy and time elsewhere (obviously).
Love and blessings,
Tuesday, October 25, 2011
My surgeon called this evening with the biopsy results: "Julie, I have very good news - it is scar tissue." That's when I fell to my knees and sobbed tears of joy and praised God aloud over and over. Doc heard me crying and must have thought I misunderstood her as she reiterated that it was good news haha and I told her I was so happy I was crying out of sheer joy.
With that news out of the way she reminded me that we still need to take it out so it's not left there to turn into something else which apparently can and does happen. Surgery is still on for Friday morning. Fine by me.
Thank you so much for your prayers and well wishes, making me feel so loved and cared for no matter what the outcome was going to be. God is so good, blessing me with such amazing friends and family. I'm incredibly grateful.
Remission continues! =) Praise God! What a relief that the remission clock doesn't need to be reset.
Like my three year old son, Cooper, has taken to saying lately "that was a close one!" and "ay ya ya ya ya!" ;) When he saw me crying while laughing tonight he said "Mommy, you're funny, I love you." I love you too, Cooper - more than you could ever know!
Dear Lord, my creator and ultimate healer, I praise and thank you for the countless "second chances" you bless me with. My gratitude is immeasurable and my love for you infallible. You brought me back from the brink not just once, but many times and you work through me in ways I never imagined possible. Lord, I ask you to wrap my warrior sisters in your healing light and love - take away their pain and fear and instill a sense of peace and confidence that Your will shall reign for the greater good and that You will provide comfort and healing of all that ails and troubles them. Lord, I ask you to bring forward the cure for the wretched disease of cancer that plagues us. Show us the way to eliminate the toxins and dangers brought about by greed, selfishness and other evils that Satan thrusts upon us with the false promise of empty "wealth" and "convenience". Lord, use us survivors to spread your good news and to help our sisters through this difficult trial in their life and show them how they're loved and valued the way I have been loved and valued through my journey. Help us to keep paying it forward, Lord, delivering hope, laughter, and faith in Your name. In your son, Jesus' name, Amen.
Saturday, October 22, 2011
For now, it mostly is there in the back of my mind and comes into the forefront when I have a nasty hot flash or when my arm swells and feels gunky from the lymphedema. The flashes had begun to really slow down until I was on vacation in the hot and humid Florida sun and enjoying a refreshing beverage each night (wine, beer or margarita) and before getting half way through a single drink I was breaking out into an intense wave of heat and sweat reminiscent of the early days of surgically-induced menopause (read: BRUTAL). So there it is - alcohol is a major trigger for my hot flashes. It's a good thing I don't drink much or often. The high heat and humidity also aggravate the lymphedema which really stinks since it also makes it unbearable to wear the compression sleeve that should help manage the amount of swelling in the arm. I end up tearing it off for some fresh air relief. It was so hot all summer here in the Santa Clarita Valley of southern California that I hardly wore the sleeve at all and now my arm is a bit puffier than it should be so I'll need to get some of that intense therapy that requires it be bandaged up for 24 hours for a 2 week period. I'll wait till the weather is cooler though - it's still in the upper 80s here believe it or not. I welcome the cooler weather, not the round the clock bandaging.
If it's not my own physiological reactions relating to treatment side effects and surgeries, there are reminders all around like things I can't do anymore - no more spa days since I can't go in a hot tub, sauna or steam room (aggravates lymphedema), and I learned this past week that I can't do the challenging spinning exercise classes since I can't put pressure on my arm/hand such as when the class is instructed to do stands or "jumps" or lean-ins that require a firm grasp and leaning with the arms and hands on the handle bars. I'm not terribly sad about these lifestyle changes most of the time but as they arise they serve as reminders - reminders that at times are unwelcome moments of frustration but praise God that most of the time they are reminders of what I've overcome and that I'm still here, living life!
The blessing of the fear that pervades my consciousness is that it serves to remind me to cherish every moment, to live life to the fullest, to not sweat the small stuff. Even though I've been on this crazy ride, I seem to still need reminders often so I guess that's why I'm showered with them!
The fear of recurrence is the worst of all though. I try not to think about it but this week it took center stage as I returned to the UCLA Revlon Breast Center for a follow-up appointment and was faced with my surgical oncologist's different opinion from my medical oncologist's feeling about something I can feel in my left breast (which of course is mostly made up of belly fat at this point but I guess that tiny bit of breast tissue that's left behind after mastectomy still presents a risk). I wanted her opinion but my heart sank when she quickly determined "it needs to come out". Um, what? Yup, whatever it is that we can feel needs to be biopsied and removed and biopsied again because the booby masher and ultrasound tests I endured shortly after hearing those words were "inconclusive". Shoot. Crap. Boo! Trick or treat?! Blech!
Dear Lord, I submit to you my life for Your will. I lay my worry and fear at Your feet and trust in You. Please guide the physicians and nurses minds and hands to ensure accurate and clear results and provide for my safety and comfort while in their care. Please grant me acceptance and peace with whatever the outcome may be. But Lord, please let it be benign. Amen.
Thursday, September 29, 2011
I've remained committed to eating healthy, consuming immune-boosting foods and supplements daily, but I've been remiss in ensuring I get enough sleep and exercise each day. That needs to get fixed now.
Starting tonight, I need to commit to getting to bed earlier so I can wake up earlier and start each day with a sweat-breaking power walk with my little man.
Dear Lord, please help me to submit to your will and honor the body you have given me and have miraculously healed from the brink. Please grant me the wisdom to focus more productively during the day and early evening to get what needs to be done early enough, to help me avoid the temptation of Facebook and other sources of entertainment that keep me from achieving my important goals. Thank you, Lord for the countless blessings and miracles in my life - for giving me another day - for bringing me this far. Amen.
Friday, July 8, 2011
Monday, July 4, 2011
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.
Psalm 30 (NIV)
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.
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.
“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.
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.”
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.
Tuesday, June 21, 2011
I'm so grateful for our merciful and loving God that I can breathe a sigh of relief and turn my focus on the next challenges ahead - root canal this Thursday, and big surgery on Tuesday next week.
I'm trying to not worry so much about things, and just really enjoy each day which is a gift - I wake up and am blessed immediately with another day. I must remind myself of Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
I'm also focused on celebrating my son's third birthday which is today. I'm so proud of Cooper - he's such a wonderful, loving and happy child. I love him so much. He had a great day and is now soundly asleep and I wish I was too...I better go work on that now! :)
Wishing you a blessed day today, tomorrow, and every day. Thank you for reading and for your prayers - it means so much to me!
Sunday, June 19, 2011
So...I've been a good sport for the past two years and agreed to get replacement breasts following the bilateral mastectomy in June '09, mainly because my hubby and my cosmetic surgeon convinced me I'd want them at this stage or later and if I didn't do it then I likely wouldn't get great results by delaying it, especially since I had to have radiation treatment which does nasty things to skin and tissue.
I originally chose the implant method, using tissue expanders to stretch my skin (since a good deal of skin had to be removed during the mastectomy) and then got the expanders out and regular implants in and have had numerous surgeries to try to achieve symmetry and fix strange issues. Unfortunately, as is the case with 60%+ of cases where radiation is involved, my left breast has just not cooperated. It sits higher, the skin is thick and tough (like the heel of a foot), is tightly clamped on the implant, and the incision scar is deeply sunken leaving a deep crease that can be seen through clothing and basically swallowed up the nipple that was created because the skin won't push out and I have the lymphedema swelling that pushes out the softer skin above and below the scar line. The radiation damage that causes this gets progressively worse with time - it started out OK, but just got worse with each surgery.
There are days where I look in the mirror and think 'oh screw it, it's fine' and I put on the bra with the inch of padding in the tip to create a rounded appearance (a normal padded bra would not work). But then an hour or so later I'm catching myself in public clutching my boob because it feels so tight and uncomfortable - not that grabbing it makes it feel any better, just that it is a natural reaction to the yucky feeling and at the time I think if I just lift it maybe it won't feel that way. Then when I'm home I take off the special bra (which isn't that comfortable either!) and I see my boob with a butt-crack and I think 'hey! why should I put up with this!?' Why SHOULD I have to wear strangely padded bras that are difficult to find just to appear normal in clothing?! But, more importantly, why should I have to FEEL so uncomfortable because I have damaged skin and tissue clamping down on an implant!?
My surgeon is amazing. He is so compassionate and talented. He listens to my concerns and works hard to find ways to fix the issues. Each time I've gone under the knife I know I'm getting the absolute best care with him. Unfortunately, working with radiated skin and tissue has its limitations. We've reduced the implant size twice, hoping that the tightness I feel from the radiated tissue/skin and the lymphedema would ease up but unfortunately it has had the opposite effect and now I'm lopsided and incredibly uncomfortable and deformed. But I'm tired of surgeries and feeling so uncomfortable. Just before the last surgery I told Dr.C that if this tweak didn't work I want to take the implants out and just give up and be done with it - I didn't want them anyway - I only just wanted to survive.
But here I am, two years later, numerous surgeries into this and so much time and hope invested. I have a beautifully reconstructed right breast and a yucky left breast. So I asked Dr.C if there was any way possible to achieve on the left what I have on the right or if I should just hang it up and go flat. After discussing the options I decided that to achieve the results I want we need to replace the radiated skin and tissue to eliminate the clamped-down implant and the yucky feeling from that, and the butt crack crater across my breast.
On June 28th I will undergo a DIEP flap (also known as "free TRAM") reconstruction surgery. The left breast implant will be removed and then skin and fat will be taken from my stomach and transplanted to the left chest to create a new breast. The current skin from the incision/scar and down to the crease of the breast will be replaced with skin from my stomach and the fat attached to the skin will form the new breast. This surgery is major - it involves "microsurgery" which means the blood vessels connecting the fat in my stomach will be dissected and then reattached to vessels in my chest to ensure a blood supply is established in my chest to keep the fat/skin "alive". This flap procedure spares the abdominal muscles (unlike the traditional TRAM procedure) which helps reduce the risk of hernias and other issues. The incision will span the entire length of the front of my stomach though and since I'll lose skin and fat there and will be sewn back up, I get a "tummy tuck" kind of (a painful bonus). This is only happening on the left side - the right breast stays as-is since it's behaving.
This is a complicated surgery which requires 4 nights stay in the hospital and several weeks of recovery. Thus, choosing this direction did not come lightly. In fact, every day I get a little freaked out about it and pray that I'm making the right decision. I know that I am and that I'll be happier once it's done, but I'm a bit scared of the pain and recovery process. I'll come home with drains, will be in bed for a couple/few weeks, won't be allowed to drive for 4+ weeks, can't lift anything for 4-6 weeks, and the abdominal incision will be 3x as long as my c-section incision was.
So, in just over a week I'll check into UCLA and get a new left boob. Praise God for an amazingly supportive husband and family and friends without whom I could not do this. Bob will be stepping up to take charge with Cooper and the animals and when he is away for work my mom will be here for a couple/few weeks once I'm home from the hospital. My dear friend, Tara, is going to help us with Cooper on the day of my surgery so Bob can be at the hospital with me. And other friends on the block have offered to help entertain Cooper when my mom needs a break during her visit.that this is even possible! I'm so blessed to have such amazing physicians, to live in the US where federal law requires that cancer-related breast reconstruction must be covered by insurance if the treatment/removal is covered, to work for an incredibly supportive employer that provides excellent benefits and is compassionate and supportive, enabling me to take the time to get this done. I am VERY appreciative of everybody's support. I am so blessed and grateful.
In preparation for the surgery, I've had numerous pre-op tests this past week. Blood work, EKG, chest x-ray, echo cardiogram, PET scan (results due back Monday/Tuesday), and even had to have a toothache checked out and now I get to have a root canal next week! ;/ I've gone off my blood-thinning supplements (baby aspirin and fish oil). And this weekend I've shopped for extra large front-clasp sports bras and super big, button down PJs for hospital and home, and been stocking up on diapers and other things that I won't want my mom to have to be bothered with going hunting for while she's here helping out. Got my haircut since I was due for one but couldn't wait 4+ weeks to do it (sitting in the hair washing chair would be a no-go for me post-op for a while). I need to do another major cleaning of the house and get the house ready for guests. And, I need to ensure that I do an effective temporary hand-off of work projects/tasks to the folks covering for me while I'll be out for a few weeks. Oh yeah, my son turns 3 in two days. ;)
Lots to get done. I had better get to bed and get some rest!
- Praise God for the wonderful support of family, friends, colleagues, and the brilliant physicians caring for me
- Prayer for clear PET scan results to demonstrate continued remission
- Successful, complication-free root canal on Thursday (23rd)
- Successful, complication-free surgery on the 28th and speedy recovery
- For baby Jazmine Bossman's cure and healing (distant relative 1.5 yrs old, with brain cancer)
Thank you so much for your ongoing love, support, and prayers. xoxo
Psalm 25:4-7 (NIV) "Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. Remember, O LORD, your great mercy and love, for they are from of old. Remember not the sins of my youth and my rebellious ways; according to your love remember me, for you are good, O LORD."
Sunday, June 12, 2011
Open Letter to Susan G. Komen leadership, by Alicia C. Staley
I have turned my fund raising support to the following organizations who do a better job of actually supporting patients, caregivers and loved ones who face the devastation of a cancer diagnosis, and focusing on funding innovation for treatment and pathways toward an actual cure without harming others who share their mission:
Stand Up To Cancer
Triple Negative Breast Cancer Foundation
American Cancer Society
EIF (Entertainment Industry Foundation) Revlon Run/Walk For Women
I appreciate and respect the founding principals of the Komen organization but they have gone off track and are now harming the cause, in my opinion. I think Alicia did an excellent job explaining how and why.
Love and blessings,
Saturday, May 28, 2011
Thank you, Lord, for your mercy, for your grace, for healing me and giving me another chance to glorify you and spread your good news. Only you know how far I've really come and how much further I need to go. I put my full trust and life in your hands and know you will use me as I should be used. Thank you for bringing me to you, Lord, for I was lost and now I am found.
Friday, May 27, 2011
Not sure how? Here are some links to useful info:
Now, please create a recurring monthly appointment in your cell phone, computer, or other calendar that you rely on for your appointment keeping, to do your monthly breast self exam.If you feel a lump during a breast self exam, contact your doctor and request a diagnostic mammogram and ultrasound. If your doctor doesn't take your concerns seriously and won't order the tests, go to another doctor. EARLY DETECTION SAVES LIVES - including your own.
- Praise and thanks to the Lord for reaching my 2 year survivor milestone this coming week (28th) and for His continued protection and ongoing healing and guidance.
- For clarity and strength as I consider a major reconstructive surgery that I may undergo in one month. May the Lord guide me and my surgeon to make the right decision, for the right reasons.
- For healing and comfort for a sister warrior in crisis with metastatic breast cancer.
Saturday, May 7, 2011
Today I honor them by walking 5k with other cancer survivors, caregivers, and loved ones. You will never be forgotten. We will keep fighting until the cure is found.
Friends, please feel free to comment in memory of your loved ones.
Dear Lord, please bless this event and keep us safe and strong. Please bring comfort and peace to our broken hearts and please, Lord, guide the scientists minds and hearts to the cure. In Jesus' name, this I pray. Amen.
Thursday, May 5, 2011
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.
Wednesday, April 27, 2011
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
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
Great job, Randi! Seriously, beautiful work!
Sunday, March 13, 2011
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!
Tuesday, March 8, 2011
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.