Time for a PET/CT scan: praying for N.E.D.

Well, it's time to see what's going on. They call it a "re-staging" scan. I go in first thing in the morning - scheduled to arrive at 6:30 am pacific time. I've been preparing for it today - no carbs, no caffeine, no strenuous activity, and no extreme temp exposure. I don't eat much sugar anymore anyway - that's been my new life since diagnosis. But being without any carbs is a major challenge for me since I eat so many veggies and fruits every day to help boost my body's natural immunity. I also typically drink green tea all day long - hot and cold. Not today. Only water and protein with only a small amount of low-starch veggies. No food allowed after midnight - no problem since I plan to be in bed by 9:30 pm. The reason for all the restrictions is that the PET/CT scan (when used in oncology) looks for groups of cells consuming high amounts of radioactive glucose (which they'll inject in me an hour before the scan) because cancer devours glucose (yup, lay off the sweets folks!). Apparently, excessive temp exposure and physical activity can cause muscular uptake of glucose that's stored in the body - I think that's what they said. The restrictions are a bit of an annoyance but they help get a more accurate test result so it's worth it. The way I see it (my selfish self) - the only acceptable report/outcome from this test would be one that indicates No Evidence of Disease. But, I don't get to call the shots in this epic - only God does. So, I'm laying it on Him - I'm trusting Him to use me for His purpose now. I surely hope and pray that His purpose for me is to spend the next 30+ years as a cancer patient advocate, educator, author, and speaker - and at the top of my list is being earthly mommy to my precious Cooper. I don't know how quickly I'll get the results but I'll be spending lots of time/energy praying and meditating between now and when they come in. Thank you for adding your prayers to mine. I really appreciate it. Love, Julie PS - Hey cancer, seriously, if you know what's good for you - you'll have taken your surgical and chemo eviction notices seriously. Just for good measure we're gonna nuke your butt into oblivion with radiation starting this week!

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

Quiet house, noisy mind

I'm laying in bed. The lights are out...have been for hours. Everyone but me is sleeping. The house is quiet but my mind is not. Heard today that a friend in my breast cancer support group has had a recurrence. Don't know the details. Don't know if I want to know. She had only recently finished treatment...maybe 3 months ago at most. Triple negative damn it. My heart aches for her. For me. For all of us.

Spoke to Dr.B tonight. Getting my PET scan soon. Stopping in today to pick up the order and have a blood draw. Need pre-radiation baseline and to assess my vitamin D level to ensure I take enough of it in supplement form. We talked about Zometa again. Can't elaborate on that yet. Soon.

I need to replace the worry and fear as soon as possible but need to get it out so it's not bottled up inside because that would be bad too. I need to let someone in particular know how to better support me because their own emotions are causing this person to say and do things that are hurting me deeply even though I know that is the very last thing this person wants to do. It's happening a lot and it's making it really hard for me to feel supported by this very important person. I pray that we can fix it asap.

I'm laying it all in God's hands. Asking Him to help me leverage my skills and faith to find solutions and bring me some calm of mind.

Thank you for being here. For your prayers and encouragement.

It's after 3am now. I hope I can get some sleep before the alarm goes off.

Love,
Julie


Sent from my Verizon Wireless BlackBerry

A call to action for Californians

I sent off the following letter to editors at several local newspapers and would ask that my fellow Californians do the same, along with calling the Governor's office and State Legislators' offices to demand reconsideration of the cuts to critical breast cancer screening programs in CA. Dear Editor: My breast cancer was found accidentally at the age of 37. I felt a lump that I knew in my heart was not dangerous. The tests were ordered and my instinct was correct about that lump. But, the tests discovered a sizable tumor on the other side and in my lymph nodes - masses that neither me nor my doctor could feel. I had an aggressive type of breast cancer, stage 3. The tests saved my life. In January, the Every Woman Counts program, that screens 350,000 underserved women in California annually, closed its doors and won't resume screenings until July. When the program reopens, women under 50 will not be served. To save a few bucks - just one half of one percent - having little impact on CA's massive budget deficit but having a devastating impact on the women who will die as a result. When breast cancer is detected early, the five year survival rate is 98 percent. The lack of regular screening leads to late stage diagnosis (like mine) when treatment is more expensive and survival is less certain. Because of my age (under 40), I was denied routine screening, now my treatment has surpassed the $250,000 mark. More cuts are likely. California may eliminate the program that provides breast cancer treatment for low-income women, leaving 9,000 women with breast cancer no treatment options. There are women on the front lines of our troubled economy who will lose their job and their insurance. One in eight will be diagnosed with breast cancer. Balancing the budget shouldn't come at a cost of risking their lives. Why are we turning our backs on women in our state when they need us the most? Every woman counts to me - do they count to you? Respectfully, Julie Olsen

The next chapter: Radiation

It's already that time - for the final big chapter of treatment to begin. Hard to believe, really. Today I go in for what they call the "simulation". They'll take and use CT scans to help them program the tomotherapy radiation machine in a way that carefully targets the area where they found the cancer - in my case the targeted area will be my left armpit since I no longer have anymore than 1% of natural breast tissue left in my body since the bilateral mastectomy. In a very odd way I guess, I'm most excited (and nervous too) to be having the CT scans. I'm thinking that if there's any detectable cancer left in that region of my body it will show up in the scans. Of course, they're not scanning the rest of me - that will happen after radiation is over to determine if I'm "all clear" (which I fully plan on being) or not (which is simply not an option). I'll be much more excited and much more nervous and anxious about THAT scan. I believe today I'll be scanned, posed, tattooed (yup, little dot tattoos to help them guide the machine to the right spot every day during treatment), and scheduled for my treatments which will begin next week. I'll come back and post more details later today about how the simulation went and anything else I learn while I'm there. I'm praying for a smooth, , powerful, effective, and successful radiation treatment protocol, beginning today. :) Let the next chapter begin!

The unveiling of the sisters (aka tatas)

First, let me extend my thanks again to all of you for your well wishes and prayers for a smooth and successful surgery and recovery. I KNOW your prayers go straight to God's ears and heart and I feel the shower of His blessings every single day. Every day! I'm so incredibly grateful to Him, and to you for your thoughtfulness and generosity. I have been doing GREAT! The recovery has been a breeze compared with the big surgery during the summer and what a relief that has been! I only had to take the pain medication for 3-4 days and I'm sure I didn't need them that long but I was nervous about stopping and finding myself "behind the pain" (after what happened at the hospital when one nurse delayed my meds on day 2 or 3) so I took them just in case and just took less and less each day. The only time I've felt any soreness at all is when I have broken the rules - reached for something over my head or forgot and picked Cooper up. Even when that has happened the effect has been minor and short-lived, thankfully. I have barely any swelling (a huge difference compared to last time). My only 'complaint' is the digestive trouble that comes with using pain medication - the cramping and...oh nevermind :). It's short-lived and totally bearable so I'm really not even complaining about that. Just mentioning it since it's there - but just about done with already anyway. It has been a huge help having my mom here - thank you, Mom!!! Cooper loves her so much (and so do I!) and he loves to sit at the dining room table next to her while she works on her computer. He sits and draws and plays with all her stuff - totally cute. Oh...right...the unveiling. Haha (silly chemo brain!) So, on Sunday I was allowed to take the bandages off and have a gander at the sisters, the tatas, the boobies. I was actually afraid to look because I've heard from some that it can be disappointing even when the results are good. It's hard to explain but it's sort of like when you go through anything difficult and there's one little morsel of a bonus (for lack of a better word) that you look to for fun or humor and you've talked it up and then suddenly you're faced with the reality that you may have talked it up too much and then you're suddenly disappointed not just in your own excitement about it but the actual thing itself. In the case of reconstructive surgery following breast cancer, I know from other survivors that it can go either way - it can be a moment of sheer bliss and relief or a moment of great sadness and loss. I guess how a person feels at the moment of the unveiling depends upon what their expectations were. I wasn't "attached" to my natural breasts so I didn't hesitate to instruct the surgeon to take them both from me - they failed me in life before when they were so heavy and big I could barely find attractive bras and when I had them reduced and later discovered that the surgery prevented me from breastfeeding my son and then of course when I was diagnosed with breast cancer. Me and the boobs were not my "friends" so I was totally fine letting go of them. Getting a new set of breasts that would not require wearing a bra and would be the exact size of my choosing was a nice little "bonus" to this process and although I would have been fine to not have any at all (seriously), I guess I have been psyching myself up to look at the positive side of having a set of perky fake boobs (better clothing options, perky set for life, etc.)....so I guess I was expecting bliss and that was probably a mistake. That's probably why it's taken me so long to write about it. Don't get me wrong, I'm not sad or angry about it, I'm just not as excited as I hoped I would be. Why? Well...only so much can be done in a single surgery. Not every 'issue' can be fixed and sometimes it needs to be incremental and that's the case with reconstructive surgery that involves the 'growing' and 'stretching' of skin. You see, it's not like a run of the mill boob job where you have your own original skin and nipples to tuck a squishy implant behind and voila you have perfectly symmetrical, perky and glamorous boobs. Yeah, not so much. I had ALL of my breast tissue removed in June - they had to actually cut into chest muscle and create pockets for the expanders and later implants to be set into and this causes a different look than the run of the mill boob job. I also lost a huge amount of skin from my original breasts and the expanders served to stretch/grow the remaining skin to make room for implants. Anyway, the result is that I have one side that's slightly bigger and positioned slightly differently than the other because of post-surgical settling and fluid retention (lymph drainage issue). Thankfully, these 'issues' are only noticeable when I'm nude and thankfully we're not living in a nudist colony. :)Dr.C did an excellent job but he had a lot to get done and it's hard to know how it will turn out until the swelling disappears and things settle and then he'll go back in and get more done when it's time to get some nipples (doesn't that sound so strange!? - get some nipples LOL). He warned me that there would be things that would need to be touched up along the way so I have no complaints about the way expectations were set with me - my issues are purely mine with regard the emotional buildup involved. By the way, Dr. C is such a wonderful person too - talent AND compassion is hard to come by both in a surgeon but this guy has it. I'm so glad I chose him. On the VERY plus and happy side - and this is BIG - the new implants are so much more comfortable than those expanders. So to all the ladies out there with expanders -- you will not feel icky forever. Those expanders were hard, expansive across the chest landscape, and made sleeping a challenge (for me it did). The new silicone implants I'm sporting are soft and lighter and I no longer feel like I have a chunk of steel stapled to my chest. As soon as I noticed THAT difference, I no longer cared about the temporary cosmetic issues that still linger. Another positive is that the overall shape is better and more normal looking which is a big relief because before I had to wear layers - usually a soft bra, tank top and shirt - to try to disguise the strange shape I had with the expanders. The only way I could think to describe it was that it looked/felt like I had little tree trunk stumps because of the bumpy appearance in part from the skin stretching process and results. This surgery included pulling and tucking to smooth and round out the appearance and I'm so glad about that because now I can wear a shirt without worrying about hiding my stumpy bumps. So, another milestone is behind me and that's really awesome. The next chapter, radiation treatment, begins next week. On Tuesday I go in for my radiation simulation and CT scan. The week after I begin daily radiation treatment, 5 days per week, for 7 weeks. I'm plugging along. I'm cherishing every day. I'm working on my relationship with God and with myself. I started my first ever Bible study group last night and I'm so happy to have made that important step to learning more about God's will for my life. I look forward to sharing more about that at a later time. With love and gratitude, Julie

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! :)