“Courage does not always roar. Sometimes it is a quiet voice at the end of
the day, saying . . . I will try again tomorrow.”
~ Mary Anne Radmacher
Sunday, August 19, 2012
Saturday, August 18, 2012
Two boobs, or not two boobs: that is the question
Last night, just after we got the kids settled in their chairs on the screened in porch for dinner (a daily miracle), the phone rang. The dreaded shiver of cancer-fear ran down my spine. I gathered myself as I read "DCFI" on the caller ID, and answered. Dr. Bunnell had the results of the "FISH" testing (I'm pretty sure I'm spelling that wrong, but that's how you say it, and I know it has to do with a very detailed genetic breakdown that uses something "flourescent"). I had been dreading this call, perhaps like no other, because I thought (rightly or wrongly) that armed with a clearer understanding of the type of cancer I have, he could tell me that for my type, they have no cure. Thank goodness, that is not how the conversation went.
My cancer is, for sure, HER2+. Dr. Bunnell says this changes things. I will get chemotherapy and for a year after that, I will also receive an injectable drug called herceptin. Again, I'm not Googling it, but a good friend emailed me to say I am spelling it right. Dr. Bunnell says herceptin is the biggest breakthrough in cancer treatment since the introduction of chemotherapy. He started to get into biology, and I could tell, it wasn't going to good places. I stopped him and explained a bit about myself, that I only just learned. I told him that I don't want to understand what's happening in my body, what's failing, and what we're trying to reverse. I don't want to know the herceptin works for some percentage of women, because I will just live in fear of being on the wrong side of that statistic. All I want to know is that this drug can save me and that I can beat this. "You can beat this," he said. But he qualified it a bit -- "The overwhelming odds are that you will beat this. If I was a betting man, I'd go go Vegas and bet on you and I don't bet money I think I'll lose." My legs still shiver as I write this. I don't want to be gambling with my life. But that's the deck I was dealt, and with all the other cards I got along with this one, I'll take it.
Now at least I have a focus -- I need the surgery to go well, the chemo to work, and the herceptin to kick the shit out of whatever it's supposed to kick the shit out of. Naturally, the realization came over me -- will I know in a year if I will live or I will die? I don't really know the answer to that. But, as weak and frustrated and bummed out I may feel right now, I know that the fighter in me is gearing up for the fight of her life and I need to stay focused on the belief that I will beat this.
Needless to say, I wasn't really hungry after the phone call. I know I need to defer to the doctor's schedule, but calling right before dinner is killing my appetite, and it's hard enough to eat these days. And I've never been one to skip a meal.
Of course, you all clicked on this post wanting to hear about boobs, not about herceptin so let's return to the question at hand -- Two boobs or not two boobs?
As you know, before Dr. Bunnell's call last night, I had decided on reconstruction following the double boob removal. For some reason, last night's conversation changed something for me. It got me wondering if I should skip reconstruction altogether (at least for now) and focus solely on getting rid of this cancer. Even when I talked to the insurance company lady yesterday (a kind nurse from their breast program who called to tell me what will be covered throughout my treatment (including a $500 wig!)), she explained that much of the pain post-surgery will be due to the reconstruction. Should I preserve all my strength for something life-saving rather than something cosmetic? Could the reconstruction complicate something, give me an infection that will divert my body from a more important task at hand? Could it delay the chemo (and therefore the herceptin)? Are we even talking such marginal differences? As I hope you already know, I never claim that this blog has any sort of medical advice. It just contains my thoughts and my questions, and all of the sudden I have more of the latter. So I will call Dr. Bunnell and Dr. Chun at some point in the next few weeks to get a few of these answers. I will also reach out to a few people that I know how been through a mastectomy and reconstruction and see if my new doubts are total bunk.
I'm going a bit out of order here, because I really owe you a post about my plastic surgery consult for all of this to make more sense. You already know my feelings on Dr. Chun (that she's fabulous), but I haven't yet covered the nuts and bolts of how she'll nut and bolt boobs onto my chest. So basically, there are three options. Let's call the first one, "Hollywood," cause I'm pretty sure it's the route Snooki went / will go / I can't keep track. This is the implant route. I'm probably getting some of this wrong, but the way I understand it, after the mastectomies, Dr. Chun would insert a "tissue expander" between my pectoral muscle and my original skin. There would be drains coming out of there and I must admit, the idea of liquids "draining" out of my chest for two weeks post-surgery is less than lovely. Dr. Chun would sew everything up and I would return, weekly, so she can expand the space in which the implant will ultimately go. (By the way, no Dolly Parton in my future -- I've come to hate boobs and am going with a good ole "A" on this one. I've always liked getting "A's.")
Dr. Chun explained the implant choices -- silicone or saline, fun stuff. Advantages to each? Well, if the saline one pops, I'll just deflate. Awesome. If the silicone one pops, it's not great, and I won't really know (until a yearly scan when they check up on it). Does this mean every time I'm playing with my kids on our bed in the morning and I get kicked in the boob, I'm going to wonder if it's popped? The fun never ends with breast cancer, huh? Oh, and, the implants only last about 10 years. I would hope by then, however, they've got something more durable.
I will call Dr. Chun's second option, "Patchwork," because essentially it involves building boobs out of other parts of the body. (Dr. Chun called this option "flaps.") To my own shock (because I've got a pretty quality size c-section pouch on my belly) Dr. Chun said I didn't have enough fat to build two breasts. I told her we were going on vacation and I could easily gain 15 pounds in 2-3 weeks but she said that wouldn't be good for my health. It'd be fun though -- like I was Renee Zellweger preparing for Bridget Jones' Diary. Only I already weigh 20 pounds more than Renee's "fat" target weight. Gotta love Hollywood. Anyways, this option really sounded awful -- cutting out parts of the back or the abdomen to sew them onto my front. She also mentioned a lot about rearranging muscles, at one point describing some process that included wrapping a muscle from my back around to my front, or something like that. I was confused and in the end, I think I'd like to look down and see something fake rather than something that had previously been on my back. Dr. Chun agreed Patchwork wasn't for me.
When Dr. Chun began to describe the third approach that was, in her words, even more complicated, I stopped her. I've always liked to keep things simple and I didn't think this option would prove fruitful. (Apologies, I don't even remember the name.)
Then, in came the implants for us to toss around to each other. Two weeks ago, I'd never dreamed that I'd be squeezing a saline implant in one hand and a silicone one in another, and I sure as hell never dreamed I'd be writing about it. But here I was, secretly trying to pop the silicone implant so I could remember its strength that first time I got hit in the fake boob. Luckily, it didn't budge.
Poor Brian did so well through this whole experience. He's a private guy about regular things, never mind about his wife's boobs, but cancer changes everything and all of the sudden, juggling breast implants and asking clinical questions focused on my well-being had become the norm. Hopefully, when I'm well, his friends will give him a hard time about this. But for now, he was just helping me along this hell-of-a-journey.
Next came my favorite part of the appointment. Dr. Chun explained that she was participating in a clinical trial of a new product that would fill the breast with air rather than saline or silicone. The advantages were that the patient would not have to come into the doctor's office to "build up" the implant -- a simple remote control at home could do the trick. Brian and I let out a good laugh almost simultaneously, and declined this option. We later confirmed with each other in the parking lot that we had had the same thought -- Annabel loves remote controls. We both envisioned a morning where Brian let me sleep late. He and Annabel would be downstairs and Annabel would find the "grow mommy's boob" remote. She'd try to turn on the ceiling fan as my right boob grew into a DDD. No thanks. I'll leave the clinical trial to women without kids with remote control obsessions.
So here I am, HER2+, scared, thankful, hopeful, and wondering, two boobs or not two boobs? My family and I head to Falmouth today for a week's vacation we planned months ago. I guess I'll ponder this question as I sit by the pool and as I throw my kids around in the water (and count how many times they accidentally hit my boobs). I'll ponder this question and many others. And I'll soak up that sun and that time with my family like it's the most treasured thing in the entire universe. Because it is. No matter how many more chances I get at it.
Friday, August 17, 2012
That, my friends, is love
This afternoon, my in-laws (who should be anointed to sainthood for their patience and dedication to our kids) took Teddy and Annabel to their house in Southie, where fun awaits at every turn. My family, Brianne, and I enjoyed a relaxing lunch in a shady spot outside while Brian stayed behind to "do some yard work." When I returned, I found a gorgeous clean garage and this, the clumsy file cabinet that I have loathed for years, awaiting pick up. Now that, my friends, is love.
Professionals
Our son Teddy is a very sensitive little kid. Aside from a few expected spastic times, for example, when he is flailing himself around on the living room floor trying to hit Brian or I because we took the iPad away before dinner, he is very cautious of other people's feelings. We knew this about him from a very young age. Around two years old, he had a healthy obsession with the show "Handy Manny," you know, the one with the four-finger-per-hand handy-man and his box of talking tools (if anyone knows why they didn't just slap another finger on each hand, please message me). In one episode, Manny's friend, Eliot, falls on his skateboard and breaks his arm (or his leg, I forget). Either way, Eliot is lying in a hospital bed with a cast on. Teddy's reaction? An all out complete and total mental breakdown. He was absolutely devastated that Eliot was hurt and even now, over two years later, he avoids that show. (My poor mom also learned this lesson the hard way when she babysat one night and a Sesame Street episode included Big Bird in an arm sling. My mother dealt with a screaming Teddy for two hours after that.) I actually count it is as a parenting success that he genuinely cares about people's feelings and gets very upset if he thinks someone else is hurt, although I feel badly that he suffers the consequences of it. (As a quick side note, if you need proof of how different our two kid are, Annabel doesn't mind giving anyone a good whack if they're in the way of something she wants to do. She just follows it up with an open-mouthed kiss and thinks that erases any wrongdoing. And she's right, somehow it does.) Anyways, this sensitive part of Teddy has got me thinking a lot about the upcoming months...
So yesterday, I got my hair cut. Not really short, but shorter. Even though chemo isn't a definite, Dr. Bunnell says it's highly likely, and even though (I have been told) losing my hair on chemo also isn't inevitable, I expect it to happen. Teddy seeing me with no hair is going to be hard for him, so I thought it'd be good to ease him into it. A little cut now, a little more before the chemo begins, and hopefully a shaved head won't be so much of a shock. Of course, this is for Annabel too, since, even at one-and-a-half she is also very observant. (When Auntie Lauren (Sean's girlfriend who Annabel adores) got bangs, Annabel immediately touched the top of her head, as if to say, "I see what you did, Auntie Lauren. You can't get anything past me!")
(Oh, and for those of you wondering, Dr. Bunnell never called yesterday with more results on the additional HER2 testing, although I felt like I would vomit every time my phone rang. In fact, I feel that way now just thinking of it so I'll quickly move on.)
Ever since we moved to Canton when I was eight years old, I have gotten my hair cut at the same place -- Helen's Hairstyling. Helen is an incredible woman, and a few months ago when she stayed late to cut my hair after my kids went to bed so I wouldn't have to miss them, I asked her about how she began her own business. It was an inspiring American story of a woman (and mother) with true grit and determination who started with almost nothing and built something great. So obviously, yesterday, we headed to Helen's because she's definitely in that "best of the best" group that I mentioned before.
Helen had a brand new hairdresser on staff that day -- let's call her Bridget since I don't know her enough to know that she'd want her name to be posted on my blog. Bridget told me the times that Helen would be available, or, she said, she could cut my hair, "but I'm really new," she explained. "That's great, I replied, I want you to cut it." Bridget tried to mask her surprise at my response, but I always love to give new people a shot. We all have to start somewhere, right? And if she completely screwed up my hair, it'd be all gone in a month or two, so it really didn't matter anyways!
Bridget was lovely. Sure, she splashed shampoo in my eye and struggled with the hair clips, but she took such pride, such care, in cutting my hair, that I sat there with a some peace in me (I admit, I still had periodic shivers of cancer-fear, but they were at least somewhat under control during this hour). I love seeing people do what they love to do. And of course, I love it even more when what they love to do helps other people.
This also got me thinking about my core medical team, by whom I mean my breast surgeon (Dr. Nakhlis), my medical oncologist (Dr. Bunnell), and my plastic surgeon (Dr. Chun). So far, I'd also label this team "the best of the best." Obviously, their clinical skills will be of primary importance in the end, but now, as I battle the emotional demons of a cancer diagnosis, their inter-personal skills are what matters most. I haven't talked about Dr. Chun yet, and there's so much I will share about the plastic surgery consult appointment (and plan), but for now, I'll just tell you about her.
When we met with Dr. Chun a few days ago to discuss "reconstruction" of my front-side after Dr. Naklis removes both of my breasts (yes, we're going all out with the double mastectomy), we saw a professional at her very best. Dr. Chun looked like she was put on this earth to do what she's doing. She sat with Brian, my mom, and I as if she'd sit there forever, answer any question in the world we may throw at her, and devise a plan that was best for me. She was sincere, confident, intelligent, calm, honest, and hopeful. Just the combination you want in the person who will literally have my open chest in her hands.
So what's the point of all this? I feel like it's a lot more rambling than I've done in the past (maybe because I hear Annabel rolling around in her crib and Teddy's pre-wake up whines). I guess it's only a short opinion piece on how much I love to find those people in the world who do their job with pride, and care, and sincerity. (And, I have to add, those moms and dads who stay home with their kids totally count in this bunch as I'm convinced they have the most challenging and important jobs of all.) Whether it's cutting my hair, handing me my take out food at the Olive Garden (that guy last night was wonderful too, and he obviously didn't even know I had cancer), or talking me through the clinical treatment plan that will save my life, I cherish the chance to see those people in action. Oh, and if you ever need one more example to hit this point home, watch my husband teach a history class or coach a hockey practice. You've never seen anything like it.
So yesterday, I got my hair cut. Not really short, but shorter. Even though chemo isn't a definite, Dr. Bunnell says it's highly likely, and even though (I have been told) losing my hair on chemo also isn't inevitable, I expect it to happen. Teddy seeing me with no hair is going to be hard for him, so I thought it'd be good to ease him into it. A little cut now, a little more before the chemo begins, and hopefully a shaved head won't be so much of a shock. Of course, this is for Annabel too, since, even at one-and-a-half she is also very observant. (When Auntie Lauren (Sean's girlfriend who Annabel adores) got bangs, Annabel immediately touched the top of her head, as if to say, "I see what you did, Auntie Lauren. You can't get anything past me!")
(Oh, and for those of you wondering, Dr. Bunnell never called yesterday with more results on the additional HER2 testing, although I felt like I would vomit every time my phone rang. In fact, I feel that way now just thinking of it so I'll quickly move on.)
Ever since we moved to Canton when I was eight years old, I have gotten my hair cut at the same place -- Helen's Hairstyling. Helen is an incredible woman, and a few months ago when she stayed late to cut my hair after my kids went to bed so I wouldn't have to miss them, I asked her about how she began her own business. It was an inspiring American story of a woman (and mother) with true grit and determination who started with almost nothing and built something great. So obviously, yesterday, we headed to Helen's because she's definitely in that "best of the best" group that I mentioned before.
Helen had a brand new hairdresser on staff that day -- let's call her Bridget since I don't know her enough to know that she'd want her name to be posted on my blog. Bridget told me the times that Helen would be available, or, she said, she could cut my hair, "but I'm really new," she explained. "That's great, I replied, I want you to cut it." Bridget tried to mask her surprise at my response, but I always love to give new people a shot. We all have to start somewhere, right? And if she completely screwed up my hair, it'd be all gone in a month or two, so it really didn't matter anyways!
Bridget was lovely. Sure, she splashed shampoo in my eye and struggled with the hair clips, but she took such pride, such care, in cutting my hair, that I sat there with a some peace in me (I admit, I still had periodic shivers of cancer-fear, but they were at least somewhat under control during this hour). I love seeing people do what they love to do. And of course, I love it even more when what they love to do helps other people.
This also got me thinking about my core medical team, by whom I mean my breast surgeon (Dr. Nakhlis), my medical oncologist (Dr. Bunnell), and my plastic surgeon (Dr. Chun). So far, I'd also label this team "the best of the best." Obviously, their clinical skills will be of primary importance in the end, but now, as I battle the emotional demons of a cancer diagnosis, their inter-personal skills are what matters most. I haven't talked about Dr. Chun yet, and there's so much I will share about the plastic surgery consult appointment (and plan), but for now, I'll just tell you about her.
When we met with Dr. Chun a few days ago to discuss "reconstruction" of my front-side after Dr. Naklis removes both of my breasts (yes, we're going all out with the double mastectomy), we saw a professional at her very best. Dr. Chun looked like she was put on this earth to do what she's doing. She sat with Brian, my mom, and I as if she'd sit there forever, answer any question in the world we may throw at her, and devise a plan that was best for me. She was sincere, confident, intelligent, calm, honest, and hopeful. Just the combination you want in the person who will literally have my open chest in her hands.
So what's the point of all this? I feel like it's a lot more rambling than I've done in the past (maybe because I hear Annabel rolling around in her crib and Teddy's pre-wake up whines). I guess it's only a short opinion piece on how much I love to find those people in the world who do their job with pride, and care, and sincerity. (And, I have to add, those moms and dads who stay home with their kids totally count in this bunch as I'm convinced they have the most challenging and important jobs of all.) Whether it's cutting my hair, handing me my take out food at the Olive Garden (that guy last night was wonderful too, and he obviously didn't even know I had cancer), or talking me through the clinical treatment plan that will save my life, I cherish the chance to see those people in action. Oh, and if you ever need one more example to hit this point home, watch my husband teach a history class or coach a hockey practice. You've never seen anything like it.
Wednesday, August 15, 2012
Thank You Note
Well friends (and maybe even strangers who I am happy to call my friends), I knew this post would come, and I have wondered how to approach it. Today's news wasn't all that positive. Actually, it literally was positive (the HER2 test I mean) but Dr. Bunnell explained to me that this result was unusual for a grade 1 tumor. He wants to do further testing. Unusual to me means uncertainty and I hate that. Based on this data, my treatment post-surgery will likely include chemotherapy with herceptin. (I'm not sure how to spell herceptin or even what it is but I'm terrified to Google it so the phonetic spelling will have to do for now.)
I'll admit, this news knocked the wind right out of my already flappy sails -- gave me that kicked-in-the-gut nauseous feeling that I remember all too well from last week's diagnosis. Dr. Bunnell assured me that this doesn't change anything that we knew before, that the cancer hasn't necessarily spread, but he said it will affect treatment. He told me not to worry, but I could tell, other news would have been better. I wanted to curl up and cry. Or at least get the feeling back in my weak knees.
Ultimately, it looks like my surgery will tell all, and I sit here wondering how I will ever wait for September 12 and how I will ever have the strength to hear the news that will follow it. Then I realize a tremendous irony -- I am both wishing time away and trying to bottle up every moment of it. A tough act to balance.
So here's where I want to offer you an out. Please don't feel like you need to follow this blog religiously. I love to share good news but I hate to share bad, and there will certainly be both. When I randomly googled, "start a blog," I never set out with a real plan as to what that effort would mean. Largely, it is a way for me to cope. And a way for us to keep you in the loop. But I have learned in this last week that I, and possibly some of you, can tolerate only a certain amount of truth. Didn't Aaron Sorkin write it best in "A Few Good Men" -- "I want the truth." "You can't handle the truth." This dialogue sums me right up. I want the truth, but I'm also wondering if I can handle it. If you feel the same way, I beg you to click back to Facebook and enjoy the day. I promise you, I never meant to cause you pain.
At the same time, I will keep writing because I feel like the truth could help someone someday. Maybe it's helping the 2 people in Russia who, according to my blogger.com stats, have viewed my blog. (Who are you? Tell me more! I am so curious, especially since your page views have lit up most of Asia on my little "Advanced Blog Statistics Map." I'm loving it!). Lindsay, I'm guessing you're my Germany follower and Ryan, is that you up in Canada? I'm half-joking, mainly to express to you how thankful I am that my words are reaching people.
With that less than lovely medical update, let's pick up where we left off last night....
So I have always tried to be good about thank you notes, with one really big exception. I don't do them for gifts given to my kids. I truly marvel at the incredible moms I know (not to be sexist but in reality I've only seen moms do it), who, after surviving their four or five year old's birthday party, write individual thank you notes recognizing the appropriate gift given. I'd say I aspire to this, but I know I'd be crazy to set the bar that high.
Since I was diagnosed, I have received what I can only describe as a truly unbelievable, overwhelming, life-changing outpouring of love and support. Let's be honest, it's one of the few perks that comes with getting cancer (that, and discounted parking in the Longwood area when you flash your Dana Farber medical record number card). Seriously though, what you (and others that may be less blog-inclined) have given me over the past week has brought me to tears, tears of absolute and utter amazement that somehow over the course of my life, I have met the best of the best.
Of course, between the absolute craziness of appointments, tearful breakdowns, family visits, and trying to raise two little kids, I have failed miserably at returning your messages and I'd imagine thank you notes won't happen for months. Lack of time is my easy excuse (as is the fact that post-surgery I basically won't be able to lift my arms). But my hesitation is also because I cannot even begin to explain how thankful I truly am. So this entry is my thank you note. I know, it's kind of like a group email -- it'll mean less because it's not coming straight from me to you. But please know that I have in my mind each and every single one of your texts, emails, letters, Facebook and blog comments, You Tube videos, quotes, phone calls, flowers, chocolate covered strawberries (yum!), evil eyes, key chains, bracelets, t-shirts, cards, babysitting sessions, inspirational stories, warm hugs, and other gifts I'm likely forgetting. (Oh, and Sean and Lauren, trust me, I have kept track of all of the house-cleaning and laundry you've done. Does that stop once I'm cancer-free?)
Anyways, there's one thing related to all of those unbelievable gestures that I feel compelled to set straight -- I am worried that I may have created a myth about my own strength through this and somehow planted a seed in your head that you would not be just as strong if (heaven forbid) you were forced to be. Trust me, you would, and in many cases, you have. So I feel that if I don't bust this myth, I'm doing a disservice to you. So here, in this odd blog entry / thank you note / mythbuster, I want to come clean.
Lest you think I forgot those lyrics I posted last night, let us return to them. In a weird way, they are even more pertinent tonight than they were when I chose them last night, as I am in a darker place now than I was then, having now received the HER2+ news.
The first night after my diagnosis was the worst night of my life. I was not strong, not a hero, not a fighter, not anyone's inspiration. I fell asleep around 11, snuggled safe next to my husband and completely spent, but at 1AM I woke as if bombs were falling outside. Of course I didn't want to wake up Brian who deserved his sleep more than anyone, and I wouldn't dream of bothering my mother even though she insisted that I do so (and was so upset that I hadn't). So I just lay there, alone in the blackness of my grave, wondering about how our house would feel without me in it. Wondering about whether my family could enjoy a vacation on the Cape if I wasn't there. Hoping that there is someone else out there that would treat Brian like the most wonderful man in the world that he is, and angry, so deeply angry, that it wouldn't be me that could enjoy his company forever. So fucking angry that something would steal me away from my kids, my parents, my siblings, my relatives, my friends. Bursting at the seeming injustice that I wouldn't hurt a soul, but some nasty disease was tearing mine apart. (Sorry, had to pause to find the tissues so my laptop doesn't become covered in my boogery tears. Which led me to the recent pile of BJ's purchases stacked in the garage - paper towels, diapers, toilet paper, and my much-needed tissues. Which then led me to realize I need to clean the garage. If anyone needs a huge file cabinet, I've got one in there I'm trying to get rid of. Nothing like multi-tasking right?!)
Anyways, boogers wiped and tissues nearby, I power on. In that first night of knowing I had cancer, I dwelled in a very dreamy deep as Bruce wrote. From my head to my feet, my body had gone stone cold. Cancer crawled up and down my neck like poisonous spiders. I kept on thinking I heard the kids cry for me but it was just the airconditioner humming. Then I just shook uncontrollably. Could barely breathe. Starving, but couldn't eat. Needing to vomit, but without the strength to do it. It was one fucking awful night. (By the way, my friend Heather likes to swear about my cancer and I have to say, it makes me feel so much better so please pardon my french throughout.)
I tell you about this night for a few reasons. First, lest you think I solved the problem solely with my inner strength (again, dispelling any myths), the next morning my mom called in for some sleep and anxiety medication. Yep, I don't do natural birth and if there was a pill that would make sure a night like that never happened again, I was going to take it. Even if the side effects were that I grew a tail. (I haven't.)
Yes, the small dose of sleep medication has helped. But that little pill is nothing compared to you. In other words, you mean more to me than Ativan (this is shaping up to be quite the odd thank you note, isn't it?). No seriously, let's talk about you all for a bit.
The day after that dreaded night, as we began to share my diagnosis and hear from you, I heard voices calling all around me. The earth rose above me, my eyes filled with sky. In all honesty, it wasn't only what you said to me that filled my eyes with the sky again. Beyond that, something amazing happened. I started to think of each of you and the burdens I know you carry, and most of all, the strength you have shown in the face of your own struggles, during those times I'm sure that you lay alone there in the dark. Among you, you have taken care of sick parents, siblings, and friends, and even held their hand as they passed. You have been shocked by tragic accidents and somehow got out of bed the next day. You have had complications with pregnancies, with births, with kids that need special attention. You have suffered through painful divorces, painful illnesses and injuries, or the loss of a pet. You have raised kids alone, struggled to make mortgage payments, or dealt with depression. You have suffered abuse that no one deserves, or loved someone that didn't love you that way in return. And, in what I honestly think must be the worst of all worst, you have seen your own child laid to rest. Boy, put us all together and we sure sound like a pathetic lot!?! But we're not. We're just a slice of humanity. And in the last week, I have learned more about humanity than ever before. Most of all, I have learned to draw my strength from those I love, and from those of you who, despite your own burdens big or small, get up in the morning, smile, breathe, work, love, and move forward.
So to wrap up this great comedy of an entry, I quote the Boss:
Our souls and spirits rise
To carry the fire and light the spark
To fight shoulder to shoulder and heart to heart
To stand shoulder to shoulder and heart to heart
We are alive
We are alive. With scars, and hurt, and love, and hope. With cancerous boobs and questionable lymph nodes. With uncertainty, and fear, and appreciation beyond explanation. We are alive (and, as I believe Bruce intends, so are the souls and spirits of those we have lost). Thank you all for standing with me this past week and in the weeks to come, and for letting me stand with you.
Oh, and tomorrow, I may just post a video of newscaster bloopers. I always think those are hilarious, and seriously, I don't think I can take all this emotion. Or maybe I'll post the drawing that the plastic surgeon did of my new boob options. That's pretty funny too. Either way, we'll lighten it up a bit. I wouldn't want to lose my Russian readership.
I'll admit, this news knocked the wind right out of my already flappy sails -- gave me that kicked-in-the-gut nauseous feeling that I remember all too well from last week's diagnosis. Dr. Bunnell assured me that this doesn't change anything that we knew before, that the cancer hasn't necessarily spread, but he said it will affect treatment. He told me not to worry, but I could tell, other news would have been better. I wanted to curl up and cry. Or at least get the feeling back in my weak knees.
Ultimately, it looks like my surgery will tell all, and I sit here wondering how I will ever wait for September 12 and how I will ever have the strength to hear the news that will follow it. Then I realize a tremendous irony -- I am both wishing time away and trying to bottle up every moment of it. A tough act to balance.
So here's where I want to offer you an out. Please don't feel like you need to follow this blog religiously. I love to share good news but I hate to share bad, and there will certainly be both. When I randomly googled, "start a blog," I never set out with a real plan as to what that effort would mean. Largely, it is a way for me to cope. And a way for us to keep you in the loop. But I have learned in this last week that I, and possibly some of you, can tolerate only a certain amount of truth. Didn't Aaron Sorkin write it best in "A Few Good Men" -- "I want the truth." "You can't handle the truth." This dialogue sums me right up. I want the truth, but I'm also wondering if I can handle it. If you feel the same way, I beg you to click back to Facebook and enjoy the day. I promise you, I never meant to cause you pain.
At the same time, I will keep writing because I feel like the truth could help someone someday. Maybe it's helping the 2 people in Russia who, according to my blogger.com stats, have viewed my blog. (Who are you? Tell me more! I am so curious, especially since your page views have lit up most of Asia on my little "Advanced Blog Statistics Map." I'm loving it!). Lindsay, I'm guessing you're my Germany follower and Ryan, is that you up in Canada? I'm half-joking, mainly to express to you how thankful I am that my words are reaching people.
With that less than lovely medical update, let's pick up where we left off last night....
So I have always tried to be good about thank you notes, with one really big exception. I don't do them for gifts given to my kids. I truly marvel at the incredible moms I know (not to be sexist but in reality I've only seen moms do it), who, after surviving their four or five year old's birthday party, write individual thank you notes recognizing the appropriate gift given. I'd say I aspire to this, but I know I'd be crazy to set the bar that high.
Since I was diagnosed, I have received what I can only describe as a truly unbelievable, overwhelming, life-changing outpouring of love and support. Let's be honest, it's one of the few perks that comes with getting cancer (that, and discounted parking in the Longwood area when you flash your Dana Farber medical record number card). Seriously though, what you (and others that may be less blog-inclined) have given me over the past week has brought me to tears, tears of absolute and utter amazement that somehow over the course of my life, I have met the best of the best.
Of course, between the absolute craziness of appointments, tearful breakdowns, family visits, and trying to raise two little kids, I have failed miserably at returning your messages and I'd imagine thank you notes won't happen for months. Lack of time is my easy excuse (as is the fact that post-surgery I basically won't be able to lift my arms). But my hesitation is also because I cannot even begin to explain how thankful I truly am. So this entry is my thank you note. I know, it's kind of like a group email -- it'll mean less because it's not coming straight from me to you. But please know that I have in my mind each and every single one of your texts, emails, letters, Facebook and blog comments, You Tube videos, quotes, phone calls, flowers, chocolate covered strawberries (yum!), evil eyes, key chains, bracelets, t-shirts, cards, babysitting sessions, inspirational stories, warm hugs, and other gifts I'm likely forgetting. (Oh, and Sean and Lauren, trust me, I have kept track of all of the house-cleaning and laundry you've done. Does that stop once I'm cancer-free?)
Anyways, there's one thing related to all of those unbelievable gestures that I feel compelled to set straight -- I am worried that I may have created a myth about my own strength through this and somehow planted a seed in your head that you would not be just as strong if (heaven forbid) you were forced to be. Trust me, you would, and in many cases, you have. So I feel that if I don't bust this myth, I'm doing a disservice to you. So here, in this odd blog entry / thank you note / mythbuster, I want to come clean.
Lest you think I forgot those lyrics I posted last night, let us return to them. In a weird way, they are even more pertinent tonight than they were when I chose them last night, as I am in a darker place now than I was then, having now received the HER2+ news.
The first night after my diagnosis was the worst night of my life. I was not strong, not a hero, not a fighter, not anyone's inspiration. I fell asleep around 11, snuggled safe next to my husband and completely spent, but at 1AM I woke as if bombs were falling outside. Of course I didn't want to wake up Brian who deserved his sleep more than anyone, and I wouldn't dream of bothering my mother even though she insisted that I do so (and was so upset that I hadn't). So I just lay there, alone in the blackness of my grave, wondering about how our house would feel without me in it. Wondering about whether my family could enjoy a vacation on the Cape if I wasn't there. Hoping that there is someone else out there that would treat Brian like the most wonderful man in the world that he is, and angry, so deeply angry, that it wouldn't be me that could enjoy his company forever. So fucking angry that something would steal me away from my kids, my parents, my siblings, my relatives, my friends. Bursting at the seeming injustice that I wouldn't hurt a soul, but some nasty disease was tearing mine apart. (Sorry, had to pause to find the tissues so my laptop doesn't become covered in my boogery tears. Which led me to the recent pile of BJ's purchases stacked in the garage - paper towels, diapers, toilet paper, and my much-needed tissues. Which then led me to realize I need to clean the garage. If anyone needs a huge file cabinet, I've got one in there I'm trying to get rid of. Nothing like multi-tasking right?!)
Anyways, boogers wiped and tissues nearby, I power on. In that first night of knowing I had cancer, I dwelled in a very dreamy deep as Bruce wrote. From my head to my feet, my body had gone stone cold. Cancer crawled up and down my neck like poisonous spiders. I kept on thinking I heard the kids cry for me but it was just the airconditioner humming. Then I just shook uncontrollably. Could barely breathe. Starving, but couldn't eat. Needing to vomit, but without the strength to do it. It was one fucking awful night. (By the way, my friend Heather likes to swear about my cancer and I have to say, it makes me feel so much better so please pardon my french throughout.)
I tell you about this night for a few reasons. First, lest you think I solved the problem solely with my inner strength (again, dispelling any myths), the next morning my mom called in for some sleep and anxiety medication. Yep, I don't do natural birth and if there was a pill that would make sure a night like that never happened again, I was going to take it. Even if the side effects were that I grew a tail. (I haven't.)
Yes, the small dose of sleep medication has helped. But that little pill is nothing compared to you. In other words, you mean more to me than Ativan (this is shaping up to be quite the odd thank you note, isn't it?). No seriously, let's talk about you all for a bit.
The day after that dreaded night, as we began to share my diagnosis and hear from you, I heard voices calling all around me. The earth rose above me, my eyes filled with sky. In all honesty, it wasn't only what you said to me that filled my eyes with the sky again. Beyond that, something amazing happened. I started to think of each of you and the burdens I know you carry, and most of all, the strength you have shown in the face of your own struggles, during those times I'm sure that you lay alone there in the dark. Among you, you have taken care of sick parents, siblings, and friends, and even held their hand as they passed. You have been shocked by tragic accidents and somehow got out of bed the next day. You have had complications with pregnancies, with births, with kids that need special attention. You have suffered through painful divorces, painful illnesses and injuries, or the loss of a pet. You have raised kids alone, struggled to make mortgage payments, or dealt with depression. You have suffered abuse that no one deserves, or loved someone that didn't love you that way in return. And, in what I honestly think must be the worst of all worst, you have seen your own child laid to rest. Boy, put us all together and we sure sound like a pathetic lot!?! But we're not. We're just a slice of humanity. And in the last week, I have learned more about humanity than ever before. Most of all, I have learned to draw my strength from those I love, and from those of you who, despite your own burdens big or small, get up in the morning, smile, breathe, work, love, and move forward.
So to wrap up this great comedy of an entry, I quote the Boss:
Our souls and spirits rise
To carry the fire and light the spark
To fight shoulder to shoulder and heart to heart
To stand shoulder to shoulder and heart to heart
We are alive
We are alive. With scars, and hurt, and love, and hope. With cancerous boobs and questionable lymph nodes. With uncertainty, and fear, and appreciation beyond explanation. We are alive (and, as I believe Bruce intends, so are the souls and spirits of those we have lost). Thank you all for standing with me this past week and in the weeks to come, and for letting me stand with you.
Oh, and tomorrow, I may just post a video of newscaster bloopers. I always think those are hilarious, and seriously, I don't think I can take all this emotion. Or maybe I'll post the drawing that the plastic surgeon did of my new boob options. That's pretty funny too. Either way, we'll lighten it up a bit. I wouldn't want to lose my Russian readership.
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