It's a big deal

It's a bigger deal than I thought. In May I was going to get nipples constructed and have my port removed during same visit as the hysterectomy. But the plan changed when the lymphedema swelling resulted in one breast being larger than the other so instead it became implant swap out, minor revisions for symmetry, and hysterectomy/oopherectomy and keep the port til the next surgery so I could use it for another zometa infusion.I was relieved even though the port gets in the way sometimes when trying to cuddle with Cooper and he presses on it or puts his head on it and that hurts or when the line up into my neck gets irritating and causes swelling which looks and feels like a swollen neck node on that side, causing me to panic even though Dr.B says it's ok.

This thing has been an incredible blessing - helping me painlessly (mostly) endure countless blood draws and 12 chemo infusions and 2 zometa infusions, and even used it in my two recent surgeries to get me asleep without discomfort. It has spared my arm veins from being mangled at a time when they would be vulnerable (chemo) and helped me protect my arms especially the left one with lymphedema since it can be poked (too risky for infection and swelling danger).

I've had two clean PET scans since finishing chemo - Feb.1st and Sept.7th so now it is time to say goodbye to my port. Praise God, I don't need it anymore! Every time I say, think or type that I begin to cry. Joyful tears. Maybe some nervous tears mixed in too.

Tomorrow morning I go back in for nipple construction surgery and the port will come out and the scar revised to clean it up (it's ugly/angry looking). As I was getting ready for bed tonight it finally hit me. I'm done (with cancer). Treatment is done (minus the zometa bone protection I will get quarterly for 2.5 more years, the quarterly blood draws and follow ups and of course the nipple tattoos as the final step in reconstruction).
I really am a survivor! From stage 3c to "cancer-free" in 15 months. Wow. Praise God!

I am living proof of the Lord's power and miracles. He woke me up and set me straight and I am listening (and learning). He showed me His work in my life daily through this journey (and ongoing) - with the most amazing support network (you included), the most loving and supportive husband so certain of my complete cure and healing, brilliant and compassionate physicians, nurses, administrators (except for a couple - remember my first attempt to get a port!?), a generous and caring mother and father who came to help whenever I asked...an incredibly supportive employer and team at work who patiently and generously gave me the time I needed to get well without the fear of losing my job or health coverage. The exact right caregivers at the exact right time for my precious Cooper. A bearable (albeit challenging) course of treatment with limited and tolerable side effects. My many friends, family and colleagues who wrote, called and sent generous thoughtful gifts to cheer me up and donations to fund breast cancer research in honor of me! Awesome neighborhood friends who checked in on me, brought meals, helped with Cooper and the dog, and kept me company when being alone was unbearable while Bob was working. God led me to my new church home and family a year ago where my faith in God and mankind has been restored and raised to levels I didn't know were possible. And, of course, He brought me to the bravest, most beautiful warrior sister survivors with whom I share an unbreakable bond for life.

These are the works of an almighty, merciful, forgiving and instructional God who has transformed me and I believe is using me and I am so amazed, so blessed, so grateful. Thank you, Father, for these blessed gifts. I am humbled, grateful and determined to become worthy of them. Please continue to use me, Father, to spread the good news and glorify you in my thoughts and actions. Guide me, Lord, and help me to not stray. Forgive me, Lord, when I do stumble as I often do. Take my worries and fears, Lord, and help me live beyond my own abilities and fulfill your will for my life. Thank you, Father, for your healing and your mercy for me and so many others.

Lord, please wrap my friends Michelle, Theresa, Tracie, Tonya, and Sue in your love and light. Infuse their bodies with healthy fighter cells and medical ammunition to destroy and eliminate the cancer that has taken residence in them. Give them continued strength, hope and faith in your promise and word and bring about complete cure and healing as I know you have big plans for these warriors here on earth.

God, please hurry and show us the cure for all cancers.

This, I pray, in Jesus' name. Amen.

Faithfully,
Julie

One down, 7 to go!

This morning I had my first chemotherapy infusion. I was delighted to find out that my friend and neighbor who is a nurse at the center was available to be my chemo nurse - yay! I love you, Michelle! Michelle is such a beautiful person and she has a gentle touch and fantastic sense of humor. So when we realized my port was only allowing fluid in and not blood withdrawal, we were able to laugh about it and then gave up and she took blood from my arm - she is so good at it that I didn't even feel the needle. She's GOOD!

While we waited for the CBC results to come back, we talked through the mini pharmacy of medications they're putting me on to prevent and minimize side effects. Once the results were in and normal we got started and they started with diphenhydramine/Benadryl to prevent or manage a possible allergic reaction. It made me very sleepy. Well...that plus the half of an Ativan they told me to take in advance, and the 2 Vicodin I needed for the port incision pain - all taken before arriving -- it amazes me I wasn't a drooling, slurring mess. thankfully, I wasn't. Michelle got me up to speed on all the medications - what to take and when - and then she proceeded to switch the bags for my infusion and there it was...the first chemotherapy drug I received - Taxotere.

Once we got started that Benadryl really kicked in and I fell asleep - I nearly slept through the entire infusion - 90 minutes worth. LOL. I had planned to visualize the liquid gold vaporizing cancer cells. I'm going to have to come up with a strategy for staying awake during the infusions so I can do that - it's important. I'd like to note that when I opened my eyes and looked up at Bob in the next chair over, he was sound asleep too! :)

Anyway, you didn't really think I'd just post a picture of the drug bags on the IV stand did you? Nah! There I am, below! May as well take lots of pictures with hair and before the typical chemo swelling starts happening which you look like a totally different person during chemo. But, really, my purpose for taking all these pics is to share what I'm going through - to hopefully help others - present and future - to get through their struggles of any kind - and to help me by using this blog journal as a release and a reference for later on.

So, live strong my friends - laugh, love, and live. Our time here is precious and should not be squandered. Do your best at everything but don't beat yourself up over little things that just aren't important. Love your loved ones like there's no tomorrow. Make fun and fantastic plans for the future. Worship your body and mind since you've only got one of each and there's no exchange or return policy. Stand up for those who can't stand up for themselves. Be a warrior!

Love,

Julie

Port-abled, surrounded by seeds & nuts

The port is in. UCLA was definitely the place to get it done. What a night-and-day difference there is between hospitals! I knew things would be MUCH better there since that's where I had my bilateral mastectomy last month and thankfully the port placement procedure process was similarly performed in terms of professionalism and compassion.

I'm very sore but that's normal. I guess I realize now that it would have been beneficial to have had this done further in advance of starting chemo because the idea of having the bandage peeled off of the area in the morning is making me cringe. Thankfully, whatever pain/discomfort it causes me tomorrow will only occur once since next time I go in after that the port incision will be healed. But, oh gosh, am I ever dreading the moment they peel it back to unveil the port.

I came home, popped one of the vicodin they gave me on my way out and crawled into bed with a bag of organic trail mix. After shoveling the trail mix down my throat (after all, it had been 24 hours since my last true meal), I promptly drifted off to sleep. I woke up, three hours later, surrounded by seeds and nuts (and, no, I'm not referring to Bob haha), in the bed, etc. It was pretty funny but when I laughed it hurt so I stopped laughing heehee.

Had a couple of hard boiled (organic, of course) eggs for dinner - need the protein and need to resume the eating in a gradual fashion as a precaution due to the sedation I had for the procedure, took my supplements, and crawled back into bed with the laptop and my honey. It's nice having Bob home so he can be on Cooper night time duty since I can't lift Cooper again for a few days. I even managed to get the good doc to agree that diaper changes are off limits for a few days "to avoid that risk for infection"...."and of course since that involves lifting him". haha - love my docs!! :)

Up next, first round of chemo (Taxotere + Cytoxan) - tomorrow morning, 10:00 am PT.

Oh yeah - my dear friend and neighbor, Greg, is having shoulder surgery in the morning (Tuesday) - please say a prayer for him for a successful surgery. He's been through A LOT this past year and a half - he and his beautiful family really deserve a break.

Love,

Julie

PS - Cancer - you're screwed - prepare to be vaporized - I'm opening up a can of whoopass! My new friend, Jane, even got me a shirt to announce it :) Thanks, Jane!

So, here we go!

I have 2 more hours to eat before I must fast in preparation for the port procedure tomorrow. What stinks is that the surgery is at 2pm and yet I can't eat/drink after midnight unless it's water to take pills...seems awfully unfair to me since they'd have said midnight if the surgery was 7am, know what I mean!? So at 11:45 pm, I am going downstairs for another dinner haha. The port procedure will be at UCLA this time so I'm not nervous like last time (you know, when I was going to have it done and had a horrific experience at the smaller hospital in the valley and walked out without having it done). Bob is home from his trip tonight so he'll be taking me down there tomorrow while my parents stay home with Cooper. I expect I'll be tired and sore afterward and will plan to do nothing but crawl into bed and sleep it off when we get back (probably around dinner time). Then, the next morning waking will be my first day of chemo. Wow. I can hardly believe it's time already. In a way it has seemed like ages to get to this point but now that it's here it feels like time flew by. Either way, I'm anxious to get it started since that brings me closer to getting it done with so I can say farewell to cancer and move on with my life - that's my plan. It's going to be a long journey though since I'm having 8 cycles. So, by spring time next year is when this chapter will be over (after chemo, radiation, and final reconstructive surgeries), if all goes as scheduled. It's a bit daunting to think I have a year of this ahead of me still, but then I look back on this past year and am amazed how quickly it went by in spite of the extreme sleep deprivation I endured during Cooper's first year with us - plus the crazy 5 months of bed rest before he arrived -- so if that can be a distant memory to me now, so will all of this next time this year. In preparation for this next phase I've been stocking up on my supplements, organic foods and products, medications for side effect management, hair pieces, scarves, and hats for baldness management, etc. ;) I've been scoping out all the local and online sources of organic products so I'll know where to go when I need something. I got a really cool yet simple black scull cap at a Harley Davidson dealership last week when my dad insisted on visiting this new Harley shop in town (he's a biker). I'm glad dad dragged us in there since I walked away with a couple of cool head pieces that will come in handy in about 2-3 weeks. I've been practicing building up my protein intake since the level of protein I must consume during chemo is more than twice my normal amount, and preparing meals and freezing them for easy access for those crummy days they said might come between days 3-8 of each cycle. I'm signed up for a more suitable support group at UCLA where there are several other women with triple negative breast cancer in my age range, and for one-on-one sessions with a great therapist there as well (what I found locally for those needs just weren't going to be right for me). I start physical therapy for range of motion and lymphedema prevention techniques on the 28th. All that's missing for this phase I think is that I need to start going to the yoga and meditation classes at the cancer support center - I've waited on that so that I can first get instructed by the physical therapist (who has to be certified on lymphedema prevention/management) on what movements are OK for my left arm because, believe it or not, even a slight wrong move or slightly too much pressure (i.e., pressing my palm on the floor and leaning in) can cause lymphedema to begin to develop. I have been so careful with my arm but sometimes I don't realize that certain things are dangerous til I read about it or talk to someone with the same risk. For instance, I'm not supposed to sleep on my left arm, or when seated at a table or desk I should not lean on that hand/arm in any way as it can disrupt the pressure balance and cause fluid accumulation thereby starting the development of lymphedema. That is going to be a challenge for me since I usually do lean on my left arm while doing any activity sitting down - but that's all changing now. Having my folks here has been a huge saving grace for me. They help with so much - with Cooper, around the house, and emotional support when I'm having a rough day, distracting me with simple yet perfectly wonderful outings that help keep me smiling. They're also learning so much about my new lifestyle (organic) and new risks (lymphedema) and on at least a few occasions this weekend my mom has reminded me to "switch arms" when I was about to do something that could be dangerous (pet an animal, put sharp utensils away, reach for something sharp, etc.). I'm so grateful to them for their help and support. I love you, Mom & Dad! So, now here I am - about to start chemo. I am planning to sail through it - to follow my doctors' advice: nutritional, medical, mind/body work, etc...to minimize side-effects and complications...but I'm surrounded by amazing people who love and support me and are ready to help if things should get rough (thank you for being in my "posse"!). I'm ready for this phase of this battle and I'm planning to win. So, here we go!

Big days ahead

It's been nice having a week or so free from major appointments and procedures, especially after that scary experience with the first attempt to have the port installed. But this "break" is coming to an end and tomorrow the craziness resumes. Tomorrow is my first "tissue expansion" appointment at UCLA where the reconstructive surgeon will inject saline into the breast tissue expanders in my chest to stretch my skin to create more space for the implants that I will get put in after chemo is done but before radiation begins. Apparently there should be a series of these expansions but I'm going in with the thought that one is probably enough haha - it's going to create discomfort and frankly I'm sure I'll have enough discomfort between what I've had thus far and what's to come with chemo and radiation and future surgeries so I'm not about to "elect" for more of it just for bigger boobs after spending most of my adult life wishing my boobs were smaller haha. Hubby doesn't agree with me on this point but I am happy to remind him that it's my body and that he didn't marry my boobs - he married the whole me - and the whole me would be content with a B or small C set of knockers so he'll just have to be content with that too. Monday I go back to UCLA for outpatient surgery to get a port-a-cath installed. Tuesday morning I get my first chemo treatment. I met with Dr.B on Tuesday afternoon to have the chemo Q&A which was informative. He said that days 3-7 tend to be the hardest days in the cycle (day 1 being the day you receive the infusion/treatment) in terms of feeling bad. He said I can expect to lose my hair about 3 weeks into treatment so I will look at the calendar and plan a head shaving "party" at around that time so that it won't be a completely sad/depressing experience. I bought a wig, a hair piece to use with hats, two head scarves, and I'm shopping for hats so that I'll have lots of options once the hair is gone. So...anyway...it's going to be quite the week. I'm ready...I think. haha. Thank you for your continued prayers, encouragement, and positive thoughts!

Turned lemons into lemonade

After a horrible morning (see previous post) at Northridge Hospital, Mom and I stopped for breakfast on the way home from the hospital and decided we'd go home, take a nap, and then when the sitter leaves mid-afternoon we would take Cooper to the pool and just unwind. We spent a couple of really relaxing hours at the pool, watching Cooper putter around in his floatie in the baby pool which is so shallow that Cooper can touch the bottom with his feet while in the floatie. It's fun to watch him as he realizes he can move about all on his own without mom or grandma holding onto him. He wore himself out doing this and then proceeded to take a 2 hour nap from 4-6pm so of course we had to wear him out again this evening to get him tired enough for bed. Cooper is my pride and joy - my best reason for winning this fight. I love him so much. While relaxing at the pool my mom pointed out that this morning's mishap and the new procedure team/date gives me some time to breathe before the next procedure and treatment starting. Every week I've had something done which has brought more and different types of discomfort and that could be the pattern throughout the treatment as I discover which side effects I will experience. But between now and the 10th of July I won't be poked, yanked on, cut into, or injected. I can actually focus on healing more, on spending quality time with my family before things get even crazier. I was concerned that the earliest date I could get the port placement scheduled with the UCLA surgeon is just a couple days before chemo would start because I had read it should be placed 1-2 weeks ahead of time but the surgeon's assistant told me that was not true and that it could be placed and used for treatment as early as the same day. I will call the oncologist to verify that tomorrow but if that's indeed the case then I'm glad I didn't get it today, mishap or not. Next series of procedures now includes expander inflation on the 10th, port installation on the 13th, chemo starting on either 14th or 16th. It's a lot, so I'm glad to have this little break between now and then.

Ah...drain-free...and chemo scheduling

Drain #3 (well, technically it was #2, but it was the last one of three to come out) was finally removed today. Yay! The nurse kept acting weird and I finally asked her what the problem was and she said she was concerned we might be taking it out prematurely. I asked her why she thought that since she has been telling me for a week that once it's been putting out less than 30 cc per 24 hours it would be ready to come out and it's been under that threshold for 3 days now and she explained that once it's out there's no going back and that the only other way to get the fluid out if it accumulates is needle aspiration. I wanted to say "so what?" since I've been poked and prodded constantly for weeks now (not to mention spending 5+ months getting weekly needle injections during my bed rest/pregnancy) but she explained that since I have the tissue expanders in my chest there's a risk of puncturing them when needle aspiration is performed and if THAT happens I'd have to have another surgery to get them out. At that point I fantasized about looking her in the eye and telling her I hoped that would happen because I'm not too thrilled with these expanders - they hurt and yet they haven't even been inflated yet - they feel awful and I know it'll feel even worse when they start pumping them up to stretch my skin...at this point I'd love an excuse to say take them out and let me have small B cups - I'd be happy with that. I just kept quiet though - I don't know why, maybe it's because I was too wrapped up in the anticipation of the icky feeling of having the drain tube removed - it's like they're pulling your guts out. As soon as it came out, I started leaking! That didn't happen when the other two drains came out and the nurse was worried and started sopping it up with gauze. I reminded her that the threshold meant there's still fluid - that the other ones were removed when the same amount of daily output was occurring. She didn't seem to care. She gave me a bag of fresh gauze and tape to take home with instructions to keep it dry and clean and sent us on our way. I'm so glad I'm free of the ace bandages that were wrapped around my breasts and my waist 24/7. The breast area was wrapped to keep the drain tube close to the incision and my body and my waist was wrapped with an ace to use as a hidden pocket to tote the drain bulb around without having to wear a jacket or sweatshirt with a pocket and risk Cooper seeing the tube and pulling on it. It was uncomfortable, to say the least. As soon as those came off - even before the drain was removed - I felt better, free. In the morning I go to the hospital for an out-patient surgical installation of a port-a-cath in preparation to start chemo soon. It will take up more than half of my day. I will be so glad when that is over with and hope it won't irritate me all the time. ;/ I have my pre-chemo meeting at the local UCLA cancer center on the 7th - to go over how the chemo will be administered, how it could affect me, what preemptive medications I'll be given to combat common side effects, etc. Then, the following week I'll receive my first treatment. Before I start the chemo I am going to schedule a family photo shoot to mark Cooper's one-year birthday so the pics can be taken before I lose my hair. ;/ Gah! ;/ I don't care much about my messed up boobs or losing my hair, but I don't want to ruin happy Cooper milestone memories with cancer-related issues/reminders if I can avoid it. Hey cancer, you're really crimping my style - I hope you're scared as hell because I'm gonna blast you into oblivion!

Gearing up for phase two

This past week of healing from the surgery has been good - have needed the pain and muscle relaxer medications only once per day, if that (I'm still sore and get tinges of sharp pain in some spots, numbness and tingling in others but compared with the first week it's a huge difference). I am still not cleared to pick up Cooper or to drive so I'm incredibly grateful that my mom, Janet, is here to help out. She's amazing and Cooper adores her. She's able to be here because of an amazing program at her employer where employees can donate unused vacation time (that they may otherwise "lose" if not taken by a certain date) to a bank of hours that employees in need can apply to receive for emergency situations. When my mom's boss heard about my diagnosis and that my mom needed/wanted to come out here to help me through this, he immediately submitted a request to get her a bunch of paid time off since he knew she'd exhausted her earned vacation time for the current year. It's an awesome program for which she and I are both very grateful. Anyway, I have one drain remaining on the side where I had numerous lymph nodes removed, but I feel fairly confident that I can have it removed Monday if we make the trek down to UCLA - and I think we will do that since the incision where the drain comes out is really bothering me - no sense in waiting til my Wednesday appointment down there if it's ready to come out. I also would like to have it be gone when I go in Tuesday morning to have a port-a-cath installed in my chest (another surgical procedure) - I'm sure the radiologist placing it would want it out before the port placement too. Anyway, it's something I'm NOT really looking forward to but has to be done. I just don't like the idea of having some hard plastic thing under my skin which can be seen and felt 24/7. I realize that the functionality of it will be of great benefit to me in that my chemo treatments will be easily administered without destroying the veins in the one arm I can be injected into, particularly since I'll be undergoing 8 cycles of chemo. It can also be used for blood draws which will occur before every treatment plus sometimes in between treatments. Still, the idea of this thing creeps me out. I have to ask the plastic surgeon or his staff tomorrow whether it's even OK to have it installed in my chest since I have the booby tissue expanders in. I think the other location option is in my arm - I'm not sure which would be worse to be honest. Besides getting the drain out, I have two other phase 2 tasks to accomplish Monday - call the oncologist to schedule my first treatment, and attend a support group. I am definitely planning to make that call. The support group I'm not totally sure about quite yet. Here's the thing - the group is for people that are "in treatment". It's not focused on a particular type of cancer, or those in a particular stage of illness, and thus I could find myself surrounded by reminders of what my disease could turn into rather than focusing on what it is now and the hope that it won't go further. I know there's value in connecting with others that have/had cancer - that's why I signed up with the organization in order to participate in their groups and services - but I think I am going to look for a breast cancer specific group (this organization doesn't offer one right now) that I can attend instead so that there is at least that aspect of commonality instead of walking into a group of all types, all stages, all everything. I just really need to channel my mental energy into positive, hopeful and determined states of thinking and that is challenging enough without being confronted with what I imagine I might find if I go to this group. There, I made up my mind. haha. Instead of going to that group I will look for a different one. I also need to look for a different therapist - the one I went to on Thursday was....well, let's just say she's not for me. I'm fairly savvy in the area of individual therapy and I know what works for me and what doesn't so I need to make some calls to see who else is nearby that might be a better fit. I haven't been getting the amount of sleep needed for a healthy individual, let alone a person like myself battling cancer and in need of a boost in immunity, so I'm taking steps to address that problem. We resumed Ferber training with Cooper this weekend and I'm thrilled that it's been quite successful and not at all painful as our last attempt was. I actually managed to eek out 10 hours of sleep last night - broken into 3 different "sections" with just minimal interruption time and that was amazing - that's the most sleep I've had in one 24 hour period in over a year! I had to help myself a bit by taking some diphenhydramine but it worked which is great because I really don't want to take prescription sleep pills since I do need to be responsive if Cooper does wake up. Anyway, I think the sleep issue is finally being worked out now that we've got Cooper doing much better (just 1-2 wakings per night compared with being up every 2 hours all night long before). That's good news :) Speaking of sleep....it's time to do just that. Good night!