Tata to the Tresses

I did it! Last night, surrounded by some of the most amazing friends and family, I shaved off my hair so that it can be donated to Locks of Love before it would be too late since my chemo-induced hair loss had begun several days ago. The timing turned out to be perfect because yesterday morning I woke up and had a handful of hair just from gently running my hands through it. We made a fun night of it as we gathered on my patio, enjoyed some good eats and wine, and my hair stylist, Kristen, prepared my hair for donation by putting it in several ponytails to ensure we got as much length as possible ready for submission. Here I am, with my son Cooper, once the ponytails were in place.

Then, it was time to say tata to the tresses (thank you, Sue, for the great catch phrase!). Using an electric trimmer, each ponytail was removed and then a quick once over to try to attempt to even out the remaining stubble (can you say GI Jane!? LOL). Sometimes it tickled and felt so weird as the hair was buzzed off that I couldn't help but laugh. It looks like I'm in pain in this next picture, but I wasn't - just reacting to the very strange and tickly feeling of the hair trimmer getting so close to my scalp.

Then, all that was remaining were bangs... ...yeah, not a look I was ready to sport...so off they came... And here I am with my little layer of peach fuzz. I was prepared to take a straight razor and shave it completely but my friends and family suggested I keep it this way for a short while to see if I even need to (it might just fall out on its own). But after one night of sleeping with the fuzz I'm pretty sure we'll be shaving it this weekend because it feels very strange and annoying when I turn my head while my head is resting on my pillow.

I was worried that Cooper, my 13 month old son, would be afraid of me without any hair but it turns out there was no reason to worry because he thinks it is absolutely hilarious. He looks at me, smiles, points at my head and when I bend down for him to touch it, he rubs my head and giggles almost uncontrollably! It's hilarious. We'll try to get that on video. Speaking of video...we taped the shaving but I haven't had time to upload any clips but we'll work on that and post it as soon as we can.

Once my hair was gone, I modeled the hats, wigs, silly hair pieces and scarves that I've begun to collect in preparation for this. Here's one of my favorite pictures of the evening - me and my dad modeling our Harley Davidson skull caps :)

I have several months of treatment ahead of me so there will be plenty more pictures of me with my bald "dome" (as someone recently called it) and it will be interesting to see what happens with my eyebrows and lashes. Til then, I'll enjoy still having them. Thank you, to everyone who joined me on this special and important night. Your presence, your support and encouragement helped me get through what could have otherwise been a traumatic part of my cancer ass kicking process, and instead helped to make it a fun event. And, thank you to those that wish they could have been there but were unable to be - I know you were there in spirit and wishing me well and that means the world to me.

Because, apparently, fighting cancer isn't stress enough...

This morning, day 14 of chemo, one of my to-do's was to address a growing stack of medical bills and contradictory insurance explanation of benefit (EOB) statements. I receive the bills and set them aside until I receive the corresponding EOB from the insurance company to find out what my portion of the bill is. If there is confusion, I call the insurance company. Well, every bill in the stack created confusion because if there was a corresponding EOB they didn't match - either physician name, amount, etc. I knew it would be a challenging task. I called the insurance company first to figure out which of the bills I needed to pay. Verdict...all of them. ;/ I asked the representative why since the EOBs indicated my portion owed was $0 and that my annual deductible and out of pocket maximum was met. She put me on hold and then returned and explained that my out of pocket maximum was not met until 6/24 (by the way, my new year starts 7/1 so that didn't do me much good, did it!? LOL). She had no answer as to why my EOBs dated earlier than that stated that it was met already. ugh. While I had her on the phone I asked her how much of the current year deductible and out of pocket limit had been satisfied (the year beginning 7/1) and she said that the deductible was met already (and that I have another $1500 to go before I meet the out of pocket max)! I was a bit surprised since I have not received a single EOB or physician bill for anything dated after 7/1 yet. I guess the port placement surgery and the first chemo treatment did the trick...but that means that after paying about $1000 of medical bills this morning (my portion of the surgery and pathology in June) did not even include the $500 worth that I haven't been billed for yet for medical treatment received in July. At this rate, I'll meet my $2,000 annual out of pocket maximum (minus copays since I'll have to keep paying those) by September based on planned treatments. Think that's bad enough? Apparently, the insurance company doesn't. I just received a EOB today indicating that I may be on the hook for $3,851 for the cost of my mammogram! I called them to ask what that was all about and I was told: "it's under review for medical necessity". Shall I repeat that? Yeah, I didn't think I needed to. I asked the representative if this was some kind of sick joke and she didn't appreciate that very much and tried to explain to me that because I'm under the age of 39, that makes a diagnostic mammogram an unusual claim. I couldn't help but laugh when I heard that. I reminded her that they already had approved and paid for the double mastectomy and the first round of chemotherapy treatment and asked her if she thought that the mammogram was medically necessary. She didn't have much of an answer for that. Then I asked her why they sent me an EOB stating that the $3,851 was "patient responsibility" if they are supposedly still reviewing and haven't yet decided whether they'll be paying for it. She didn't have an answer for that either. I reminded her that before I went in for the diagnostic mammogram I called and asked if it would be covered and I was told: "if a doctor deems it medically necessary" and I followed it by stating that my doctor ordered it based on my feeling a lump in a self exam and I was told "that sounds medically necessary to me." I asked to speak with someone involved in the decision and was told that claim examiners "don't take calls from customers." Isn't that unbelievable!? The representative then proceeded to try to convince me that it's too early to be upset about this (she actually said that! and I responded something like "if you were me, staring at a $4k bill you probably wouldn't think so") - that they're awaiting supporting medical records from the provider. Again, I had to laugh and then asked them what kind of record might they be looking for - something that says I called my doc and said I felt a lump and the doc said to go get a mammogram? I mean, come on - there's a doctor's order for a diagnostic mammogram and sonogram in the file that was sent to them - what more could they possibly want beyond that and the fact that they KNOW I had breast cancer that required surgery, chemo and additional treatments to come!? Do they actually think I might go get a mammogram, sonogram and biopsy for fun? All of this got me thinking about how awful it would be to not have health insurance at all. I mean, sure it's annoying and still very expensive to be sick WITH insurance. However, for those that don't have insurance, an illness would be financially devastating. I have friends who can't afford health insurance because their employers don't offer it and individual insurance is too expensive for them or because they have a history of health issues that has led insurance companies to deny them policies. It breaks my heart knowing that an accident or illness could ruin them financially because of the way our healthcare system works in this country. The other day we were at the pool with Cooper and we met a neighbor who moved here from Italy a couple years ago. He told us about how his father had two transplants and didn't have to wait nor pay a dime for it, and how his daughter was born in Italy and they paid absolutely nothing for her maternity care and delivery and the mother was on paid leave for nearly a year! My mom, who is a conservative, looked at me and said "if that is what socialized healthcare is then I'm all for it." - I nearly choked. LOL I'm very aware that I am among the lucky and privileged because I work for an outstanding employer that provides excellent benefit options and for that I'm incredibly grateful. I'm more aware now than ever before that most Americans are not as lucky as me in this regard and while I've always believed we need healthcare reform in this country, I believe it now more than ever before. Routine and diagnostic mammograms, for example, shouldn't require a fight with an insurance company when there is a legitimate need for the test. Shortly after my diagnosis of breast cancer, my husband said to me "I see you testifying before congress regarding mammogram coverage/availability for women under 40." and I just laughed and thought about how all my energy needs to be focused on fighting this cancer. But he is right - I can't sit back and watch this happen, knowing it's happening to women (and men) every day. Something needs to be done about it. So, in my spare time, I'll be working on that. ;) Anywho...what's in store for the rest of this week? I start physical therapy tomorrow. Shave my head Wednesday night and donate my hair to Locks of Love. Support group on Thursday. Booby expansion appointment on Friday. I need to squeeze in writing a letter to the head administrator of Northridge Hospital (about that horrific experience I had with the first port placement attempt), and call the breast imaging center to make sure they sent the "records" to the insurance company...and the list goes on (but I won't bore you).

Day 11: Runny eyes and acne

Today was a great day. I got tons of sleep last night and this morning and then spent the day resting since the sitter was here in charge of Cooper and Bob was busy doing work around the house. Since waking up, my eyes have been running. Not crying - just constantly watery eyes to the point it drips down my face. Makes it hard to read or look at the computer - so I haven't done much of either all day/night, least not til now. For the past few days I've also been plagued with a rash of acne across my chin. I NEVER get zits - I mean, the last one I remember before this was like at the start of my pregnancy (Cooper is 13 months old now). I have like seven or eight of them right now. Ick. On the plus side, my belly/guts are feeling and behaving much better. So, it's a fair trade-off I suppose. My head is still tingling but not much hair has come out today (phew!) - let's home it stays put til at least Wednesday so I can be in control of that :). I hope everyone has a wonderful weekend.

Day 10: Tingly scalp, furry shirt

Yesterday I noticed my scalp tingling a bit which was a bit eery - not a scary feeling as in being afraid of losing the hair but rather a "oh crap" this (cancer/treatment) is real. I mean, I've known all along it's real, and I havent' been in denial at all but sometimes something doesn't SEEM real until something symbolic or related happens - that's what this is - it affirms the fact that I have chemo drugs pumping through my body now and not only will I know it and my close family and friends know it, but anyone that sees me once I am bald will know it too. I'm OK with that...it's just a new stage I'm entering now - one step closer to the finish line is how I see it. When I showered this morning I was tempted to not wash my hair because I didn't want to do anything to encourage the hair to fall out before I can take it off myself next week at my hair shaving party planned for Wednesday evening. However, it had been nearly a week since it was washed so it just had to be done. I was relieved to not have clumps of hair litter the drain or stuck in my hand as I rinsed the shampoo out. I combed it, put some styling mousse on it, and decided it would have to air dry - again, not willing to encourage hair loss/breakage just yet. Once dressed and ready to head out for my support group at UCLA, I walked into the kitchen where Bob was and he promptly asked "did you just lay on the dog?" I thought that was a very strange question until I realized he was referring to what the back of my shirt looked like. He sent me to the nearest mirror, turned me so I could see my back and there it was - dozens of my own hair strands all over the back of my shirt! Agh! It's too soon! Supposedly this usually starts happening around week 3 - I'm on day 10! Thankfully, we aren't talking about clumps of hair - just lots and lots of single strands. Hopefully it stays that way for the next 5-6 days so I can keep my current plan for my party on Wednesday. BUT, if clumps of hair start coming out before then, I'll have to resort to Plan B which is to push the party up a bit. I'd better get over to the wig store to pick up all my goodies that I have them holding onto for me while we wait for a couple pieces to arrive on order. So, anyway, about this party I keep talking about...I decided a couple weeks ago that I would be taking control of the chemo related hair loss and would host a head shaving party where my nearby friends and family could come over to offer moral support while enjoying wine (and whining haha), cheese, etc...and help me make light of the fact that I'm removing my hair to donate it to Locks of Love, and avoiding the craziness that would go with letting it fall out in clumps on its own. Currently the party is planned for Wednesday (29th) - but like I said, if clumps start to fall before then, it'll be sooner. Ah, the adventure! Dear cancer - don't go thinking you've got the best of me with this hair nonsense - I've always held the philosophy "it's just hair, it'll grow back" and nothing has changed that. I'd gladly go bald the rest of my life if it meant keeping you out of my life. So you can just forget it if you think you're getting to me through my hair - no way - I'm ready for baldness - I'm going to wear it well while I kick your friggin ass!

Day 8: Best chemo day so far

Didn't get as much sleep as I had hoped but adding a probiotic to my morning shake made a HUGE difference to how I felt the rest of the day which was a very pleasant relief considering the most recent unpleasant side effect (think gastric track and that's all I'm gonna say about THAT!). I rested a lot during the day while the sitter was in charge of Cooper and then when she left for the day I brought Cooper to the mall so I could get a good walk on. I planned 30 minutes and I did 60. :) I was amazed at how good I felt compared with the day before. Oh the difference a day makes! Yay!

Day 7: Rough start, smooth finish

After a brutal night of hourly wakings with the baby, my belly continued to rage a war with me this morning. My mom took Cooper down for breakfast and to keep him busy til the sitter arrived so that I could go back to bed and I took some meds and went back to sleep til about 10:30 am or so. Once I was up I was feeling better and managed to even brave the heat (again 104 here today) to run a couple of quick errands with the help of my parents. The fast fatigue factor stayed with me today - I was leaning on a shopping cart within 5 minutes of entering the store and wanting to get out of there as soon as possible just so I could sit down. But my stomach seemed to be behaving - at least for a while. By evening I was feeling better - still tired, but belly not burning anymore - and we enjoyed a nice dinner. It was still too hot to do my walking so I didn't make it up from yesterday and that bothers me - but I have to be realistic, and forgiving, of myself as I adjust to what is happening to my body - especially if I haven't gotten enough sleep the night before. But I am working on back-up planning since the sleep issue will happen from time to time - after all, I have a 13-month old in the house. I need to do my walking somehow, so I'm working on a plan to ensure I get back-up sleep time, and back-up walk time when plan A goes awry. We figured out why Cooper's sleep is messed up right now - he's getting a molar tooth. So we're hopeful that the pre-bedtime Motrin dose and teething tablets will help him sleep a longer stretch so that I will too. If he does better tonight and I'm not wiped out by morning, then I'll go take my walk in the morning when the sitter arrives. If not, I'll go back to bed and do the walk in the evening. Anyway...it's amazing how I went from project managing multi-faceted work projects to being barely able to get the right amount of rest and stamina to do just basic things (like the dishes or carrying Cooper up to bed) that I once took for granted. I'm going to need to put my creative problem solving skills back to work asap to come up with a gameplan for how things will get done while I continue treatment and how I will reintegrate back to work too. It's amazing how one can go from being non-stop on the go to struggling to stand after a short casual stroll through a store in just a matter of days. Anyway, Cooper is asleep and I should be too. But before I log off, I want to say that I'm so proud and relieved to have gotten through this first 7 days of chemotherapy with relatively minimal side effects. Sure, I've had some discomfort and fatigue - but it was not as bad as I had expected it to be - just different. I'm holding fast to my warrior status. Can you hear me roar? LOL :) I couldn't have gotten through it without the love and support of so many wonderful family members and friends. My folks have been amazing - I'm so blessed and lucky they are here for me - thank you! My friends - near and afar - have been tremendously supportive - thank you so much. I love you and appreciate the support, the prayers, the cards, the humor - everything you're doing that is helping me to get through this. Good night!

Hot and gutsy...

...but not in the fun way LOL. Day #6 has been the hardest on me so far. I didn't sleep well last night because Cooper woke frequently and then I had trouble getting back to sleep because my belly is in a weird way. It's hard to describe but there's this short-lived burning sensation that comes and goes. No nausea - just this weird burning feeling and some occasionally twisting of sorts - so, I'm calling it hot and gutsy. Anyway, after being up numerous times with Cooper all night, I felt horrible by 6am when he was ready to be up for the day. Not even a couple of hours of tending to him in the morning and I was already a wreck because besides feeling 'hot and gutsy', I'm super tired - wearing out so quickly after barely doing anything at all. This came on suddenly - I feel fine and then five minutes later I need to sit or lay down. Thankfully, my parents saved me by taking him to the pool for the rest of the morning so I could go back to bed. I slept from 8:30am-12:30pm! Thank you, mom and dad!! I felt a good deal better from the rest but the pattern of wearing out quickly didn't subside at all and it's been a struggle all afternoon to get into a feel good groove. It isn't helping that it's 102 degrees in the shade here today - ick. We took a quick trip over to Trader Joe's for a couple of items and facing the heat getting in and out of the car was unbearable - felt like the wind was knocked out of me just opening the garage door to go out to the car. It's typical heat for this area at this time of year but I sure wish it was cooler because being cooped up in the house is not good for any of us right now. Cooper is not a happy camper when stuck inside so it's a challenge to keep him stimulated and out of trouble when we can't go out in the yard or for a walk due to the extreme heat. The mall closes early on Sundays so it's not likely I'll get over there and get my 30 minutes of walking done today and there's no way I'm doing it outside in this heat ;(. I'll need to make up for it tomorrow somehow. Right now, I'm going to lay here with Cooper while he naps. He's such a beautiful little angel. :) Love, Hot & Gutsy LOL

Cycle #1: Days 4 & 5 - Living Strong

Days 4 & 5 were better than I expected them to be. I thought after day 3 with the steroid reaction and the Neulasta bone pain in the skull (which did actually get worse before getting better), I might be in for a crazy ride for a couple days but thankfully things turned out to be OK. Halfway through the day Friday I decided the skull crushing headache was absurd - that I shouldn't suffer silently and not seek a remedy - that it deserved a little whining to the doctor. So I gave him a call - disguised the whining in the form of a question "So, doctor, what type of over the counter product might possibly take the edge off of..." Dr.B explained that the pain is from the bone marrow inflammation pressing against the bone and he said that some women, often young women, experience the bone pain the worst in their face/sinus area, but that most people feel it more in their sternum, back, etc. He said to alleviate the pain I would need an anti-inflammatory medication like Aleve or Advil and that I'd need to take double the stated dose on the box but he gave me what my max daily limit should be for it. For Aleve, he told me to take no more than 4 pills per day - 2 pill dose, 12 hours apart. So that's what I did and I felt soooooo much better within just an hour or two. Since I don't take the steroids beyond day 3 of each cycle, I got to skip the hot flush of the face and neck the last two days - bonus! LOL. I even managed to supervise the purging of a few closets in preparation for a garage sale we had this morning. My tummy has been a tangled mess since taking the pain meds from the port procedure at the beginning of the week and this morning when I got up I thought for a minute that I might see a bit of the nausea that I have watched people experience with chemo. I decided I didn't want to chance a stroll down that path and quickly gobbled up a Zofran before heading downstairs for breakfast. It was going to be a long day (garage sale day) and there was no way I was going to let a pretty smooth first chemo cycle turn into something else. Thankfully, it worked and there was no queezy wheezy pukey dukey nonsense going on here. The garage sale was a great success. We didn't even have a ton of big items like furniture or anything to sell - just a whole lot of stuff we didn't want or need anymore - and I still managed to raise enough money to pay for my portion of my double-mastectomy surgery (I have GREAT medical insurance but I still have to pay 10% coinsurance up to a certain limit) which was not cheap. Writing that check to the surgeon's office will be less painful knowing that I have a giant wad of singles and fives to cover it. LOL. Seeing most of the stuff not come back into the house was priceless though - good to purge. Time to find my friend, Aleve, and call it a night. Love and blessings to everyone!

Cycle #1, Day #3: Not too bad

I woke up with some minor boob/chest pain and asked Bob if he'd been trying to grab me or something - I was just kidding and he looked at me like I was on drugs (which of course, I am)...then asked why. I told him my chest ached and he reminded me that the Neulasta shot I got on Wednesday stimulates bone marrow production of WBCs and does so in the large bones like the sternum. My face was aching too but I attributed that to the headache that was raging upon waking. Took some Tylenol along with my first round of Rx meds (anti-nausea and steroid pills) and went back to sleep. About 90 minutes later Bob woke me up to inform me my face and neck were turning red and I should check it out. I told him I felt fine and to let me sleep but I couldn't fall back asleep knowing something might be going on so I got up to investigate. Yup, my face and neck were red - like a minor sunburn, only I haven't been out in the sun. And, warm to the touch. I took my temperature (normal), then put a cold cloth on and waited 30 min for when the oncologist's office opened and gave them a call. Based on the description I gave, they said it's a common reaction to the steroids I'm on (Decadron) and that as long as my temp remains normal and it doesn't turn into a full-on rash/hives, I'm OK. Okie dokie! :) So I proceeded to get myself dressed and packed up for my trip down to UCLA for my first visit with the breast cancer support group. I got a late start and it took me a while to pack all my wears - have to carry organic food, medications, water, etc. with me all the time now - and made my breakfast shake. Finally I was out the door and worried I'd be late but the traffic gods were with me and I made it on time - was the first to arrive even ;). It was a nice group - a good mix of people at different stages of treatment - even a man in the group who just started his 3rd cycle of the same chemo I'm on. I liked it. So, I'll go again next week. Someone else in the group had the same flush reaction to the steroid as me and is now having some trouble with taste buds. Another person said that the facial pain is the Neulasta shot - that for some people the skull/facial bones increase production and ache (ah lovely) and it feels like a bad sinus headache (yup, that's it). But, the overwhelming majority of those that had chemo or are in it now indicated the nausea is not a big major issue these days for most people because of the good drugs they give us now to prevent and treat it. That was good to hear/know. I haven't had any nausea as of yet and am hoping not to - but I have an arsenal of meds to combat it if I do. So, to break it down - on day 3, my side effects have been: headache, slight aching of facial and sternum bones (from Neulasta shot), flush face/neck (from the steroids which are taken just on days 1-3), and in my mouth I had a little white irritation on the side of my tongue but my mouth isn't too dry since I'm doing lots of preventive stuff for that. I did try to have an iced chai tea latte tonight and that was a no-go --- the spice was too much for my mouth (usually it isn't) so I have to be careful with spicy stuff now which is a bit of a bummer, but hey - a small sacrifice to make for the good fight. I'm tired, but that's probably because I did a bit too much yesterday, and then today I drove myself to UCLA and back and I'm not used to doing that anymore since I couldn't drive for 4 weeks after the surgery. All in all, not too bad. I'm sipping a cup of cooled down hot cocoa with cooked quinoa seed in it -- quinoa is a plant-based seed that is a complete protein which has lots of health benefits - including vascular type benefits that can aid in alleviating migraine headaches - something I have a history of. And the protein is a bonus for me right now. It's tasteless so it can be put into just about anything - pretty neat. You can buy it at Whole Foods or Bristol Farms at their bulk section and it's easy to cook - can just boil and simmer then scoop into other things. I may cook some into an omelet tomorrow. Oh - forgot to mention I barely avoided a disastrous run-in with a new vitamin today. The holistic doc recommended a powdered form vitamin they carry at the hospital b/c of the issue I'm having with the giant horse pills I have right now - I bought two canisters of the powder vitamin, got home, picked up the canister to open it but looked at it first and there it was: "PABA" -- I'm allergic to that. ;/ It's odd that they put it in vitamins but it's mostly found in sunscreen lotions, hair and skin products, make-up, and vitamins. I get a MAJOR full-body hive rash and swelling any time I've used products with it so I called the hospital boutique and asked if I could return it (unopened) - after all, it cost me $50 and she reluctantly said OK. That was interesting. I have to get it down there by closing time Monday though (hmmm) because "normally we don't take returns on that stuff". I reminded her that my chart is on file on her computer and it states I'm allergic to PABA and sulfa drugs, so she said "fine". This was after an earlier conversation in which I asked why they charge $49 for a critical herb supplement that everywhere else sells for $23. She wasn't too happy with me so I guess I should feel lucky she's letting me return the deadly vitamins LOL. Just another example of needing to stay in charge - or be willing to raise hell if people aren't reasonable/kind/whatever. OK...really need to sleep so signing off. Here's to hoping day #4 is as good as or better than day #3 :). Thanks to all for your prayers and support - I love you!

Day 2 was a good day - now on to day 3

Had a great day today (as the doc said I would). Only symptoms noticed today was a mild headache I woke up with but that's not entirely unusual for me, and some bloating in the belly area most of the day which I actually attribute to my new diet of organic food and the increase in veggies & fruit and large amount of protein intake. I think I'll buy some beano or some organic version of that type of thing to see if that helps at all. I had my Neulasta shot this morning to boost my white cell count and prevent infection and they warned it could cause bone pain but some people don't get that side effect. I'm not planning to get that side effect (or many others I've heard about) - I figure, if I decide to feel good, I will. We'll see how far that philosophy takes me but for now, that's my plan - to feel great all the time :). I know some who've been down this road before may be cringing right now at my naivity but that's OK. I will gladly eat my words later on if need be. So here I am, midnight - entering day 3 - the day that most of the ickies creep up on a person on chemotherapy. I was told days 3-7 are usually the worst. Maybe I really will be the exception. I'm following all the docs' suggestions and taking all the prescribed meds for avoidance of the ickies so now we wait and see, I guess. Ah the anticipation! ;/ If the ickies hit me on day 3 I'll be among those who understand and empathize since I'll be attending my very first breast cancer support group meeting down at UCLA. Bob suggested I have a barf bag handy in the car since I'll be driving down there by myself tomorrow. I was a bit perterbed at the suggestion - like he's assuming I'll be a mess on day 3 when I'd like him to assume this warrior wife of his will be totally fine. But, he's a realist so I think I'll make sure there's a few bags in the car before I head out in the morning - just in case. ;/ I'll bring my mini-pharmacy along too - just in case. LOL Speaking of pharmaceuticals...I just took a dose of melatonin and am starting to feel its effect so time to log off. PS - we actually did tackle the garage and the closets today! holy steroids! we trashed a lot of stuff, and pulled a lot more out for a garage sale this weekend and for eBay and craigslist selling for bigger ticket items (hello, baby equipment). I'm thinking that if I feel anything different today on day 3 it'll be back pain LOL.

Cycle 1, Day 1, rest of the day

After the treatment was over, I came home and started working on getting my protein for the day so that I would meet/exceed my new daily requirement. Had a great, healthy lunch of chicken breast, a side of home made four bean salad, and a side of broccoli (100% organic). After lunch, mom and I headed out to find a local organic market, Lassens, that I first learned about from my fantabulous friend, Kristy, who has a Lassens in her area and then I got online and found out they have one near me too! I stocked up on more organic staples and ingredients that will help ensure I can feel "normal" and prepare a variety of meals and snacks as needed/desired. This organic diet is super expensive and it's forcing me to get a move on with cleaning out Cooper's closet of clothes and equipment he has outgrown - they'll be on craigslist and ebay very soon LOL. Don't worry, Denise, you'll get first dibs before anything goes online :). After shopping I joined my awesome friend and neighbor, Clare, for a swift 30 minute evening walk with Cooper. It's been too hot (upper 90's/low 100's) to do outdoor walks during the day so we either go first thing in the morning or later in the evening (and I'm just not a morning person right now, so there ya go!). It felt great to be moving again and to get caught up. The fresh air was great for Cooper and he feel asleep and was easy to get him to bed afterward too, thankfully. Next, I got to work following Dr.Hardy's advice on preemptive side effect avoidance techniques - mainly to prevent dry mouth and mouth sores by dissolving Glutamine in water, swishing and gargling and swallowing it (2-3x/day), plus making myself a cup of Throat Coat tea with honey. Not the greatest tasting stuff but the slimy nature of it is what I need since chemo targets fast growing and duplicating cells - including healthy ones that line and protect our mouth from infection. I have special moisture drops, toothpaste and gum that I will use as well. Tomorrow we'll move a humidifier to my nightstand since it gets very dry in our bedroom. Besides the preemptive work to protect my mouth, I also began my at-home anti-nausea medication. There are three of them - three of which are required during the first three days, one is optional. Plus a steroid that I have to take for days 1-3. I can't help but laugh when I hear that days 3-7 are usually the toughest - after all, they load you up on all the good meds days 1-3 and then you stop them and voila! Well, I'm hoping to avoid the voila part of that equation with all my extra holistic steps. Intending for the best outcome, but prepared for setbacks too - warrior style, of course. I'm taking Vicodin for the port incision pain, and Ativan as needed for agitation or for sleep. The incision pain should subside by the end of the week. I'm not very agitated, yet - but I suppose that if I start having some gnarly side effects (or if that steroid keeps me up) I could become so, thus it's nice to have this stuff handy. I have to add these medications and remedies to my checklist asap so I don't forget any of them. Meantime, Michelle gave me a great list typed out with instructions. Michelle is so sweet and reminded me that if I have any questions or concerns I can call her at work or at home since she's just a few houses down the block. I love you, Michelle! OK - time to test out that melatonin since I could type and surf for many more hours the way my mind is working right now and that would not be good. Tomorrow I head back to the local UCLA infusion center for my Nuelasta shot, and then we're really going to attack the closets and get things organized for sale on craigs list, ebay, and a yard sale. I need more order (and money) in my life to support my cleaner, organic, and stress-free lifestyle. I have lots of plans for this week: meditation class, attend a UCLA BC support group, check out a new church locally, and enlist my folks' help to get organized to sell baby clothes and gear -- and I am determined to not let any chemo-related issues interfere with any of it. I am going to feel great, no matter what, because my liquid gold (chemo) is doing what God intends for it to do - make me well again. So that's that! :)

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

Prayer request for Francisca

Francisca is a triple negative breast cancer sister of mine in Indonesia - we "met" via a Facebook group dedicated to triple negative breast cancer survivors. Besdies our diagnosis, we have other things in common - similar age, very young child, etc....we are sisters now. Francisca just started her chemo a few days ago and is experiencing a common but dangerous complication - a low white blood cell count. Please say a prayer for her - pray that her cell count comes up so she can avoid dangerous infections and continue much needed treatment. Thank you!

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!

Walking v. cleaning...and booby stuff (lots of booby talk)

...so I didn't clean out any closets (or anything else for that matter) tonight...but I did get my butt in gear and went for my required daily walk. I have to say it's a very strange feeling to have knockers that don't move AT ALL when the rest of your body is moving. I'm sure I entertained at least a few unsuspecting onlookers as I strolled the mall and made an occasional sudden shake or hop to see if these bad boys would move at all LOL - can you just picture it!? If by tomorrow morning I'm feeling as well as (or better than) I do tonight, I think I'll hit those closets and enlist my dad's help (I can't do any heavy lifting but I can supervise LOL) to get that yard sale organized for Sunday (or the following weekend depending on what I can scrounge up). Now for booby talk...heehee...TMI ahead... These expanders (implants that have a valve through which saline can be added to expand them) are meant to stretch the skin to make space for implants later on so they have this strange feature of being very large in that it can be felt under every inch of breast surface whereas a typical implant would not take up so much real estate. My skin is still numb so it feels like I have a package or something attached to me - does not feel like a part of my body since there's such limited sensation there. Of course, when Cooper bumps into me or pounds on my chest I can feel THAT and it usually is followed by a whimper or an "ow!" since the underlying muscle is still healing/recovering from being split and separated from my chest to make space for the expanders. Oh yeah, that's the other thing about this type of reconstruction - since I have no more breast tissue, implants have to go underneath the muscle (normally they go between breast tissue and muscle in that the muscle doesn't get disturbed - not so for this process). So my skin is totally numb but my muscle is still reeling from the surgical disturbance and expander process. It's not excruciating, just uncomfortable and strange. So the procedure was quick and painless. What they do is they use this little magnet device on the skin to locate the valve of the expander (which also is magnetic), and they numb the skin (which was numb already haha) and then they insert a needle/tube and pump saline into the expander. You can actually see the skin raising as it goes in - well I couldn't because I was too chicken to look but when I looked down after doc injected the first side I saw a noticeable difference immediately. Pretty wild! You may recall that I was going in with the "less is more" attitude on this - that I really don't care all the much about the cosmetic part of all this stuff - I'm focused on surviving. So a funny thing happened today. Bob was with me and as we entered the parking garage at UCLA I reminded him that I need his support when it came time to discuss the size of my future breasts - that it's my body and if this process hurts I want to be able to say enough is enough even if that means I end up with considerably smaller breasts than I originally had. Once we were in the doc's office, I asked what size he thought I was at the time before injecting the saline and he said something like: "small C, maybe - but I don't know because my patients all say I'm a terrible judge of that." There is no way I was a small C this morning - I tried on a B-cup bra a few days ago and it was too big...I told him that and he said "See." We laughed. Now, I had planned to give a little speech about how I don't want to be as big as before...that less is more, etc. But when I was seated in front of this amazing doctor who happens to also be gorgeous, I found myself not even asking how much he was about to inject until he had already started! So unlike me!! Thankfully I realized this as soon as he had started and I spoke up to ask and basically since this has to be a gradual process based on what my skin can handle (as this is a stretching process) I was not at risk for being overinflated LOL. So....Bob and I are walking back to the car afterward and he says "I love how you give me the riot act and then you look in Dr.McHotty's eyes and just go with whatever he had planned!" haha!!! I did NOT give him the riot act but he enjoyed exaggerating to point out that my tongue goes a wagging over this doctor. He commented again that the handsome doctor may be getting to reconstruct a "hot set of hooters" for me, but it's Bob who will get to enjoy them. Haha. Bob is such a wonderful husband and father and he has such an awesome sense of humor too. I really hit the jackpot with him.

I'm full...

...of saline (these boobs are toting around 425 cc's of saline EACH! LOL) ...of hope ...of determination ...of curiosity ...of wonder ...of love ...and shortly I will be full of organic food because I'm HUNGRY haha :) I hope you're having a wonderful day - living life to the fullest, enjoying your loved ones and remembering that life is precious - don't waste even a second of it. PS - My booby expansion procedure today was painless and easy - what a huge relief that was! hopefully it won't be too sore when the muscle relaxer and pain pill wears off later on. If I'm feeling up to it I may be cleaning out closets tonight to get organized for a yard sale this weekend...time to purge the crap haha.

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!

Negative for the BRCA I/II gene mutation

Just got my genetic test results back and I do NOT have the BRCA I or BRCA II gene mutation that would increase a person's risk of getting breast and/or ovarian cancer. It's interesting because although I did not have the strong family history of breast cancer often associated with the gene mutation, I do have the TYPE of breast cancer that is often correlated to the mutation (triple negative), particularly at such a young age. So...does this make me "quadruple negative"? haha!! In an hour I head over to the local UCLA oncologist's office (Dr.B) to meet and review how the chemo will work, what drugs I'll be taking to manage side effects (in addition to the laundry list of supplements on my checklist), and find out what my activity restrictions will be, among other things I'm sure. I'll post later with what I find out from this meeting. PS- this morning I took my daily walk (according to research studies, walking 30+ minutes, 6x/week or more reduces a person's chance of experiencing a recurrence of cancer - you better believe I'll be a walking machine every day possible). I brought Cooper along and I envisioned me and Cooper as immunity super heroes, vaporizing rogue cancer cells and replacing them with healthy ones. :) I even heard a super hero, ass-kicking type of soundtrack in my mind as we walked - I have no idea where that came from but I like it!

My daily checklist

Here's the daily checklist I just created to help me remember all the required supplements, foods, activities, etc. If you'd like an electronic version of this file send me an email or leave a comment with your email address and I'll be glad to share it. P.S. Happy 4th of July! :)

My new, holistic, life

This afternoon I returned to UCLA, with my mom in tow (I love you, Mom!), to meet with Dr. Mary Hardy, of the Simms/Mann Center of Integrative Oncology. This meeting is designed to provide me with a customized plan for nutrition, supplements, and mind/body activity recommendations to round out my cancer ass-kicking approach. Dr. Hardy is an amazing woman and we really enjoyed meeting her. She gave me a ton of information and instructions on what I should be eating, what supplements I should be taking, what steps to take for certain common side effects once chemo starts. It was a lot of information to receive in 90 minutes...and the number of changes I'll be implementing in my daily life is a bit mind blowing. However, I left feeling like I can totally do this - like I had a bigger arsenal against this bastard. I just need to get organized quickly - and that's something I'm really good at. :) Tonight we cleaned out my pantry to get rid of things I no longer use/need and see how much room we could make for the new additions to my daily life. I hate to admit that I am a pack-rat and have a lot of clutter in cabinets, drawers, closets, etc. but it's true and I know I feel better when things are organized (a bit of OCD at work there but it doesn't always translate into my home being neat/organized) so I think each day I'll try to create more order - it gives me a sense of control which I feel I've lost with this diagnosis - and perhaps having a more organized home will help me achieve a calmer, focused and balanced feeling throughout this insanely anxiety-prone situation. Tomorrow, Mom and I will set out to create some charts for me to follow for meals and supplements (and eventually medications) because I'll be taking A LOT of stuff daily and I'll need to have a checklist to keep track and make sure I'm getting it all in (hello OCD, again LOL). There's a lot of foods I need to consume certain amounts of daily - for example, during chemo I need to consume 65-85 grams of protein daily!! Then there's certain required number of servings of fruits, veggies, certain TYPES of veggies, certain TYPES of protein, etc. We're going to need to prepare several meals in advance and stock my freezer so that I won't be overwhelmed with food preparation and all the complicated requirements, supplements and medicines. My dad loves to cook so when he's here this weekend we'll enlist his help for this process too. If we can find a way to work it into the charts, I also need to get my activities documented/planned: physical therapy for ongoing surgical healing, yoga and meditation classes for stress management, support group/therapy meetings for emotional well being, etc. I need to see it all laid out like a weekly calendar of events and to-do's. At some point when the charts are created and 'operational', I'll post them here so you can see what my daily regimen has become. I'm figuring out that fighting cancer is a full-time, 24/7 job. Hopefully, once these things are fully integrated into my lifestyle they will be second nature and won't require so much time/energy to plan and execute and then it won't seem like a full-time job at all. I will master it and it will protect me. Hey cancer - I'm armed and dangerous, so look out - your days are so numbered (but mine are not)!