To say that I was anxious about my 2nd opinion UCLA Oncology appointment today in Santa Monica would be a gross understatement. And in an attempt to diminish the butterflies flitting and fleeting around in my gut, we left early, drove down our beautiful coast on PCH and had a car picnic on the way. But the news of finding out whether or not I need chemo was about to become a reality and those butterflies in my stomach promptly returned.
SCREEEEECH!!!! (Insert loud car breaks here!).
That's right. All that anxiety for nothing! Ok, well not nothing, but holy-health Batman! I got myself all worked up for the news about chemo and ended up leaving without an answer, yet AGAIN!
To begin with, I got the same greeting from my 2nd opinion doc that I get from all the other docs. Enter, Dr. Sara Hurvitz, Breast Cancer Oncologist, UCLA. "Hi, my name is Sara. Boy, don't you just love your complicated case?"
Doesn't anyone ever say 'How are you?' anymore?
Anyhoo, Dr. Hurvitz turned out to be a rockstar doc and the appointment with this genius, cutting-edge-oncologist turned out to be a good thing even though the chemo treatment in question is still lingering. She drew a clever and picturesque cancer tumor cell with simplistic yet detailed information, in order to determine whether or not my body needs chemo. And may I say, it really explained quite a bit! Not only was her tumor drawing stellar, but her penmanship was quite impressive.
Bottom line, more testing needs to be done which now involves THE founder of the HER2/neu test who just also happens to be Dr. Hurvitz' colleague at USC. Now, all I need to do is...brace yourselves....FedEx the HER2 guru, my mastectomy tissue samples that are apparently preserved in their own wax museum in a pathology lab in Santa Barbara. Little did I know that they kept such specimens on hand.
Soooo, another week of waiting it is.
FYI:What is the HER2/neu Test? (Human Epidermal Growth Factor Receptor 2). HER2 positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. Routine testing for HER2 is recommended for most women diagnosed with breast cancer because the results may affect treatment recommendations and decisions such as chemo. (Mayo Clinic)
OK, so I'm not exactly a practicing Catholic anymore, but I still do possess my Holy Communion name - 'Ann' (Alright, so I couldn't think of anything else... and... I know that makes my full Catholic name 'Dee Anne Ann'... but... I was under pressure...on the spot...Father O'Neary was standing in front of me... waiting...I was 8 - give me a break!). But after all, it is Ash Wednesday and I WAS a loyal, Catholic child, albeit circa 1968. So, I thought this would be as good a time as any, to take part in the historical tradition of Lent. And then it hit me! BREAST CANCER! That's it! I'll give THAT up! Brilliant! But here's the twist. I'm not just giving breast cancer up for THIS Lent. I'm giving it up for ALLLLL the Lents, for as long as I live (which, by the way, will be for a very long time!). So, yep. It's official. I'm giving up breast cancer for Lent! Take THAT breast cancer! BOOYAH (and Amen!).
I've always had a special affinity towards the butterfly (Mariposa), but this week proved that even more for me. After being home for nearly 6 weeks recovering from surgeries and some emotional adjustment, I returned to work by attending a two day training hosted by the agency I work with - The Mariposas Project.
To say re-entry went more smoothly than I had ever imagined would be an understatement. I was welcomed with open arms, a roomful of love, support and a sea of smiling, welcoming faces thanks to my new work family (AKA, the 'Mariposas Family')! I was lifted to a new level of recovery and suddenly the pain subsided, if only for minutes at a time, but diminished nonetheless. A sense of calm washed over me like a beautiful waterfall thanks to my Mariposa's 'posse.' And by posse, I mean a group of nearly 40 remarkable and giving women; from administrators to speech therapists, developmental specialists, physical therapists, occupational therapists and of course, my boss (AKA, 'Saint Silvia of Argentina').
My superior ('SS' - Saint Silvia) cringes when I call her that because she is such a humbling, unassuming and unpretentious individual. Authentic as they come. And because this is the 'House that Silvia Built' - she literally hand-picked and attracted THE most amazing group of selfless and talented therapists that I have ever met in my 25 years of working.
So, to my 'Mariposas Family' - I say a gracious thank you for rallying around me these past couple of months and for being the cornerstone of the best work environment I have ever experienced. And to Silvia, whom I can't seem to thank enough, I can only simply say, gracias mi amiga!
After a bit of an emotionally draining day yesterday with 3-plus hours of doctor's appointments and waiting to hear if I need chemo, I hit my pillow last night like a ton of bricks! Hoping to wake up with a fresh perspective and positive source of energy to keep this cancer recovery train a rollin' - I was over the moon when I received this text from a past client and now my young friend (thanks to his fab parents!). For those of you who know me well, I adoringly refer to him as 'My Henry' and haven't stopped talking about him on a monthly basis for the past 6 years (and probably never will - get used to it!). For those of you who don't know me as well, trust me when I say that this kid's an exceptional one!
I don't have my own children so I relish and treasure my young 'friends' (my professional lingo that I call all of my young clients), but this one's a special one! From the moment and day that I walked into his house for home speech therapy to today, he continues to touch my heart! All grown up at age 9 and now living a few states away in the hip city of Austin, 'My Henry' continues to be full of fun, kindness, brilliance and generosity (props to his stellar parents too!).
Waking up each day for me is a unique experience based upon pain, recovery, coping and hope. But, how did my young friend and his family know how much I needed this Valentine - TODAY?!
As usual, I sat up in bed, ate a cracker (pre-med routine), took my meds, turned on my phone and had this charming Valentine picture waiting for me in my text messages. I gasped with joy!
So to that, I say thank you to 'My Henry' and his family! I heart you all back!
I'm a 3rd primary, post DCIS (twice), Stage II, ER positive, PR positive, BRCA 1 & 2 negative, lymph node negative, HER2 negative, post double mastectomy, Oncotype DX recurrence score 22, breast cancer survivor. BUT, the jury is still out on chemo.
So, we're heading down to UCLA in the next couple of weeks for an appointment with one of the country's top 20 leading breast cancer oncology experts at the recommendation of my oncologist, for a final verdict on my Onecotype test results and chemo.
Yet again, I had to say another goodbye to a loving caregiver. Seriously, it simply never changes. I still have such a difficult time with the farewells and the parting of the ways. But, it's just how it goes these days.
This time, a dear 'ol friend of Hil's family of nearly 30 years came for a weekly shift. We lovingly call her 'Aleesh' in spite of the fact that her official namesake is Alicia. And fortunately, all three of us have forged an amazing bond and friendship over the years and we are proud to call her our friend/sister/family.
And, of course, when all of 'this' came up, Aleesh immediately cleared her busy professional/work schedule to come down for a 'watch.'
In usual Aleesh style, my 'Sagittarius Sister' promptly kicked it into high gear the minute she walked through our front door. Big hugs and tears - check. Unpack - check. Change clothes - check. Survey fridge and cabinets for food items - check. Make a menu for the week - check. Make a list of house items to do and fix - check. Check on my med schedule - check. Re-alphabetize spices - check.
We know these things about Aleesh because we were all roommates 15 years ago. And, because poor Hil had to reside with two OCD, overly-organized Sagittarians (all like-silverware load this way into the dishwasher, coffee items in this cabinet, mail center at the end of the dining room). Poor thing, we still laugh about our 'ways' and give Hil the credit she deserves for putting up with our absurd ways back then.
And there you have it. We all swiftly fell into our familiar routine.
'ALA' (that's Ilocano for 'Hey!' 'Oh God!' 'You've got to be kidding!', etc) became the word of the week and now I can't seem to stop saying it. I even throw my head back or shake it as Aleesh does for additional measure. The dog food lid fell onto the floor - 'ALA!' The phone is ringing and I'm down stairs - 'ALA!' I forgot to text a friend back from last week - 'ALA!' It's just so fitting to so many situations.
But in all seriousness, I have never met someone so selfless, giving, loving & caring. She is tender- hearted and benevolent. She does things for others (and animals) because that's what her heart leads her to do. She is a humanitarian and contributor to all things, animals and people and I can't find the words to thank her enough for her time in caring for me.
I turned a corner last week - part of that was due to time but I also attribute part of my progress to her. She uplifted my spirit and for that, I am eternally grateful.
ALA! How to say thanks? I just don't know. So again, I simply say 'Thank you dear friend. Enormous gratitude for, well, simply being Aleesh.'
OK, everybody raise your hand if you DO NOT have cancer! Or, maybe an old-fashioned approach joke would be more apropos like, 'Knock, Knock. Whose there? I have. I have what? I have cancer!' And what about one of my favorite ways to break the news - at Sunday family dinner night. "Can someone please pass the potatoes to the breast cancer patient."
Seriously, there really isn't any favorable way to spill the beans that I've come up with thus far. So, I'm looking for a few suggestions here.
My approach? Go in easy and then BOOM - drop the bomb! Because let's face it, there really aren't any gentle, subtle ways to break the news. And yes, it is bomb-dropping news to say the least. And yes, I do also take your feelings into consideration. So, since this is my third dance with the Big C, I must admit, that I do have a little tradition now (unfortunately).
I either A) dive straight into the deep end of the pool with a "Yeah, I have breast cancer again" statement or B) I try to slowly, wade into the shallow end of the pool with a "Well, it's been a bit of a rough couple of months.... and uhm.... unfortunately.... I was recently diagnosed with.... breast cancer.... again."
OR..... You can take the not-so-subtle approach which, is exactly what I did just last week.
On Thursday, we were out and about doing some quick errands and ran into a male friend of ours who saw me sitting in the passenger seat of our car, with my 'pillow buddy' (the pillow I take EVERYWHERE I go, that I wedge in between my chest and the seat belt!). This of course, ignited the inevitable question (here it comes, I thought). "Well hey, what's that all about?" (as he nodded towards my pillow buddy). Ahem, "Well..." 'QUICK!' I thought. Think of something. What should I say? How should I say it? He's a boy. Keep it simple. Get to the point.
Sooo, I went with statement 'A': "Yeah, I was just diagnosed with breast cancer again and had a double mastectomy a few weeks ago but I'm doing pretty well." Done. ....Insert dead silence here...wait for the pin to drop...and...the response was... "Oh. Wow."
Bomb. Dropped. Moving on.
So again, I ask you people on the other side of the cancer coin. Any suggestions or ways in which you would prefer for us cancer patients to break the news to you? Broadcast the diagnosis? Inform you of our health status ? Downplay those awkward moments?
I'm not sure if it's just me (although I don't think so), but there are cancer milestones and statistics constantly swimming around in my head. And to me, this one's a big one because it is so hard for me to believe that merely one month ago, I was laying in a hospital room starting my recovery process from a double mastectomy and reconstruction.
I came out a new person indeed.
I look at things differently, I smell things differently and quite frankly, I don't really care about the matters and concerns that used to annoy me. All I can see now is life! I love going to the beach and delight in watching the sunsets each week, I thoroughly relish and am so present (minus my little 'med moments' and narcolepsy) in the visits from friends and family and have an overwhelming amount of gratitude for what's important in life. So, yet again, I suppose I should thank cancer for my newfound perspective. Life is good, fresh and full of marvelous moments.
Really? This is the kind of help I'm getting these days? Come on .... someone .... help a sister out!
Well at least I'm protected. Could have used them yesterday as I heard a loud sound downstairs as I was by myself for a short while. And I thought, I have no way of protecting myself! What am I going to do? So I simply said out loud - "Fine, take me! I have no way to defend myself!" (It was our dog jumping up on our couch) So, maybe some Ninjas aren't such a bad idea?
Dr. Soares prepping, the face I see during the expansion, & afterwards.
Or as I like to refer to it SNL style - "We're here to PUMP (clap!) you up!"
That's pretty much it. Every two weeks now, I make a visit to my wonderful plastic surgeon, Dr. Soares in Santa Barbara, for a refill. I call it my gas stationvisit. Get in, fuel up, get out.
But overall, the process takes about 30 minutes by the time I get in, have a looky-loo with Dr. Soares and lay back for the expanding process. Why? Because as Dr. Soares describes, it's like a pregnancy. My skin and muscles need time to stretch out before they're ready to accept the implants in April (my due date!). So, for the next 3 months, that's exactly what I'll be doing.
So, here's how it all plays out.... I lay back on his patient chair as he uses his breast stud finder (not sure what else to call it) so that he can find the magnet port connected to the expanders inside my chest (thank goodness I have no plans to fly these days and go through the security at the airport). He rolls it back and forth until the little metal bar in the middle stops swinging and STAMP! He presses down on the stud finder which has an 'X' on the bottom that makes an imprint on my skin. Then he rolls it in the opposite direction again using the same process and STAMP again! He marks the middle of the 'X's' and there you have it.
Next, he inserts a needle (I never look at that part) and says 'breathe....' and inserts it through my skin and into the magnet port. The needle is connected to a rubber tube that is connected to a large syringe so that he can insert the saline into the expanders. Then, he slowly fuels me up until I say "Enough!"
I must admit that I do get a tad nervous. OK, so maybe it's more than a tad. I get extremely nervous and I start breaking out into a full body sweat. And since this is my second time with this gig (only the first time he took OUT saline since I had too much from the surgery), I do get a bit jittery with this process. But, sweet Dr. Soares tells me to think of other things which is when I start begging him to "Tell me a story" like a 4 year old. Which at that time, he gently pokes me in the forehead twice in a teasing way and tells me to "Stop thinking so much!" Doesn't he know that I'm a pro of thinking too much? It's genetic. Just can't help it. My sister does it too so we always say, "Hey, I was thinking, thinking, thinking about..."
But, then it's done. I'm expanded, fueled up, whatever you want to call it and check myself out in the mirror. I can tell I'm a little more expanded but I especially feel it; tight as can be, full, taut, tense, overflowing with saline. It's a unique sensation for sure. But, not especially painful. I would mostly describe it as uncomfortable and cumbersome.
So, I have two weeks to get used to the new 120cc's before I go back in for more. Wish me luck and say a prayer to the Expansion Gods that I'm able to hang (excuse the pun) with them!