Today was Today

WOW!  HOLY SHIT!  AH-MAZING!  WHOOP WHOOP (air fist pump and roll)!

These are the exclamations of only a few of the countless messages we have received today regarding our appearance on the Today Show this morning.  Okay, maybe not the whoop whoop, but do it and tell me it doesn't make you laugh if only on the inside.

Nathan and I are once again overwhelmed with gratitude and humbled by the kindness and support you have all sent us today.  Whether it was a Facebook message, blog comment, email, text or voicemail, your heartfelt "voices" (ah...the digital world) has lifted our spirits even higher.  Actually, we did have face time with actual human beings live and in person.

Nathan definitely had the most unexpected interaction.  After the show, he headed directly to Sloan-Kettering for his pre-surgical appointments.  When he walked in, Nick, the happiest man in the world and greeter at the cancer center, gave him a huge hug and congratulated him.  Apparently, the Today Show had been on the television in the downstairs lobby.  Patients and caregivers were watching and, according to Nick,  many of them were whispering to one another that they thought they had seen him (Nathan) at Sloan.  Tears streamed down their faces as they exchanged expressions of joy and hope.  As for Sadie and me, it was an extra special welcome with many warm embraces and congratulations when we arrived at her school's holiday party. What a truly magical day!  Again, we thank you.

Many of the messages we received have been stories of triumphant battles against cancer.  Unfortunately, there have been others for whom the battle continues and are looking for my "secret to success."  I must remind everyone that this is a moment of celebration but we continue to keep our eyes on the prize.  My battle also continues.  This is as "successful" as I can be at this particular moment in time.  My doctors are thrilled, however, they aren't slapping me on the back and sending me off in to the sunset.  We/they are just relieved that the news of the recent metastasis to the brain will not be the final chapter of my story.

So why this sudden plot twist?  If I could answer that, I would also have the answer as to why Nathan and I received dual diagnoses of cancer within less than two weeks of one another.  I mean WTF!  Let's not forget the past year of multiple WTFs.  I have done everything in my power to beat the shit out of this unwelcome guest in my body and that must have made a difference. I was lucky enough to have had access to the best doctors and nurses at NYU, a world-class institution.  I took hardcore anti-cancer drugs.  I had acupuncture.  I had therapy sessions with my social worker and psychiatrist.  I took anti-depressants.  I did yoga.  I received Reiki.  I worked with intuitive healers.  I ate well.  I meditated. I prayed.  I laughed as often as possible...thank you very much Modern Family.  I learned to rest.  I learned to depend on others. I looked into Nathan and Sadie's eyes everyday. And, I allowed myself to humbly accept more love and goodwill into my heart and soul than I thought possible for any human being.  Nathan did much of the same.  I will continue to do all of the above.

I realize there are folks who do or have done all of the above but not achieved the results they hoped or are hoping for and I don't know why.  Is it a cop out to say shit happens?  I can honestly tell you that's exactly what I said to myself at the beginning of this journey.  I never asked, why us?  I wondered, how us?  How was this happening to my husband?  How was it happening to me?  How could it possibly be happening to both of us at the same time?  The only answer I could come up with was...shit happens or... it's a shit show or...what a shit storm or...the shit's hit the fan or my personal favorite... fuck, fuck, this is fucking bullshit. Have I made my point?  I don't have a damn clue as to the why but cursing makes me feel better. Try it, you might like it.

We've established I don't know shit but are there any words of encouragement I can impart?  Probably but I am sure you have heard them all before and they sound trite.  Yes, there may be truth to them but how often can you hear, "Just stay positive" before simultaneously rolling your eyes and sticking your fingers down your throat.

My eyes are beginning to shut and today has now become tomorrow.  I will sign off, crash and hope that the answers come to me in my dreams.

Good night and good luck!

Not much upstairs with that one

Thanks to all of you for the well wishes since I shared our wonderful/remarkable/miraculous news. I sat here crying as I read all your comments. It fills our hearts to know there are so many folks pulling for us from all around the world.

So...are you ready for some more good news? I met with Dr. Narayana last Monday. Yes, yes. I should have written last week but give a girl a break. I still have Sadie, Nathan and Griffin to care for. Oh, and there was the Z100 Jingle Ball concert to attend. Huh, Jingle Ball? For New Yorkers, you know what I mean. For everyone else, I'll explain later.

Back to Narayana. He reviewed my now infamous brain MRI. All the lesions were gone. But what about the last one on the left parietal lobe, you ask. Glad to know you're following the storyline. I asked the very same question.
ME: Didn't it grow .5cm?
Narayana: Nope.
Me: Huh? Wait...what are you saying?
Narayana: That lesion didn't grow at all. There was only .5cm LEFT and it was just the slow poke of the group. They all "disintegrate" at different paces.
My rendition of Narayana's explanation: You and I are driving along the autobahn. I hit the gas and leave you in the dust. Yes, my driving fantasies are shifting back in to gear. Zoom, zoom. So we're driving and, although we're on the same highway moving in the same direction, one of us (me) is burning rubber while you are out for a Sunday drive, if that's even possible on the autobahn. Disclaimer: I have never driven on the autobahn nor been a passenger in a car on the autobahn. However, it's the highway everyone refers to when talking about really fast driving, so I figure I can use it, too.
That's what's going on with that very last lesion. It's disappearing but at a slower rate than the other ones. It should be gone any day now.
YOU: What did you just say?
ME: YES...at this very moment, I have NO active cancer in my body. Not one tiny minuscule in any part of my body.

I now claim the title of World Champion Cancer Asskicker. And if ANY challengers want to step up, I will crush you. Uh...I mean, I'm talking about the cancer, not you you. Okay, so maybe I am taking this a little too far, but I do feel like a badass right now. I know I didn't do it alone, but I have the urge to take a victory lap or indulge in a touchdown celebration dance. Not to mention that "Goooooooal" keeps ringing in my ears. Too bad I don't have any brain cancer left. I could blame these thoughts of grandeur on that, but hey, I never was a shrinking violet.

The Cat's Out of the Bag

Well, only a truly relieved mother could use a megaphone to shout from the rooftops when news is this good. Or a mass email! If you received an emafandom my mother before I had the chance to personally call you, I apologize. She totally blew up my spot. Email is a dangerous means of communication in the wrong hands (just kidding). But, again, only a mother in her deepest moment of gratitude would rush to tell the whole word.

So...what's the news already? Christmas has come early to the Bond family. On Thursday, I got the final results from my PET scan and brain MRI, for which the insurance company DID pay. The brain MRI showed one original lesion had grown .5 cm but all the others were gone and there were no new lesions. I still have to speak with my radiation oncologist, Dr. Narayana, on Monday to find out how we will handle the remaing lesion but it is considered rather insignificant. Here's the really big news...da da da da-there are NO signs of active cancer anywhere else in my body. The breasts, the bones and the liver are all clear!!!! In a year of unending shitty news, this is beyond what any of us could have dreamed. A real Christmas miracle! Feel free to break open the champagne. We all deserve it because I wouldn't have gotten to this point without all of you behind us and beside us.

Now not to put a damper on this fabulous news beacause we all want to bask in the glory of it, but the fight is not over. Please remember that I have Stage IV cancer. There is NO remission, but I can be classified as N.E.D (no evidence of disease). In the meantime, we must continue to pray, meditate, send out good vibes and keep our fingers crossed. My prognosis doesn't change yet. However, with each scan that comes back positively, we have more and more reason to be hopeful that this story will have a happy ending...50 years from now.

You may be asking what are the practical implications of this development. Dr. Volm, the best doctor I have ever known, suggests we stay the course. I am totally cool with that. If it ain't broke, don't fix it. I will continue my current protocol of chemo drugs and Herceptin. The only difference is that he will be open to me "taking short breaks" if I want to travel.

We will continue to blog about our family and health because there is still so much to come. For instance, Nathan did come home from the hospital on Wednesday. Ultimately, the doctors changed their diagnosis. All the bacterial blood cultures came back negative so their best guess was that it was a severe case of gastroenteritis. Of course, it's a rather difficult virus to deal with as he is missing a major part of his intestines and has an ileostomy. Slowly, he has begun to recover. Obviously, the surgeon advised him not to travel so our Puerto Rico trip was canceled. However, with all the good news, we'll take the trade off. Plus my dear friend, Marcos, has insisted we make the trip as soon as we all are well.

Nathan is scheduled to have his reconnection surgery the first week of January. We are looking forward to thoroughly enjoying this holiday season. With the good news and knowing that Sadie will really appreciate all the festivities around Christmas (at least the presents part), it will be the best Christmas and New Years ever.

Oops...I almost forgot the cherry on top. I have my driving privileges back! I was almost happier about that than the scan results. For those of you who know me, you know I am not kidding. Nathan says I'm like a 16 year old with her new drivers license, looking for any excuse to drive. Anyone need a lift?

Feeliin' Hot Hot Hot

I have no patience for long hand recounts. Here's what's up now. Nathan has been admitted to the hospital. He spiked a fever yesterday that went from 100.4 to 102 by the time we were headed to urgent care at Sloan. While in the urgent care center his fever went up to 102.9. He was given tons of fluids, Tylenol and two types of IV antibiotics. They have established that it is a bacterial infection but are not sure what kind it is. He has been admitted and will be here for a few days until the blood cultures come back. Please keep him in your prayers.

Braniacs

I know many of you have been waiting to hear what is going on with the brain MRI. So here's the situation. My parents went on a week's vacation...(oops)!

Apparently, the nurse in Dr. Narayana's office never appealed the rejection by the insurance company. So, the incredible nurse, Jessica, in Dr. Golfinos' office has started working on the appeal for me. I spoke with her on Tuesday because I had scheduled an MRI (self-pay) for Wednesday. Obviously, I didn't want to wait. Then it occurred to me that the doctors might be vacation and not around to read the films. Should I wait after all?

I asked Jessica about this and she said Golfinos would be out on Friday and had surgeries scheduled for next Monday, Tuesday and Wednesday. However, she would squeeze me in by the end of the week. More importantly, she answered the big question I have had which was whether or not it was vital for me to be seen within six weeks of the surgery. Jessica said that, ideally, they wanted to see patients at six weeks but eight was the max. Next week it will be eight weeks which why she is trying to make this happen by next Friday.

I am hopeful this will all get resolved next week and that insurance will pay for it. Thank you to all of you who have advised me to fight the ruling and/or offered to pay or donate funds for the procedure. It has really helped me get a handle on this. Sometimes I forget to be my own advocate.

Hope everyone had a wonderful Thanksgiving. Our family friend, Maia, hosted our entire extended family as well as her own friends and family. There were 22adults, 9 kids, 2 turkeys and a ham not to mention all the fixins. How she did it and with a smile is beyond me. Thanks, Mai. We had a fabulous time and so did Sadie. She ate a lot, danced a lot, played a lot and thoroughly tired herself out. She was so exhausted that she actually asked to home to go to sleep. We will post pictures shortly.

GIVING THANKS!

It's hard to express how truly grateful we are today. I am grateful for something I never thought to be grateful for...to be alive. I know we all think of friends and family as do I, but remember that we must appreciate life as well. Without this remarkable thing called life, we could not be grateful for any of the blessing in our lives.

Thank you, thank you, thank you! To my friends, family and all the strangers who have supported us through this ridiculously difficult year, we couldn't have done it without you.

LOVE, APPRECIATION & GRATITUDE,
Elisa, Nathan and Sadie

Appealing the Appalling

My loyal family, friends and followers have been sending offers of payment for an MRI and/or encouragement to appeal the denial of authorization for the scan. Therefore, first thing Monday morning, I am going to speak with the insurance company and my physicians. I guess I should have thought of this myself, but, as with everything else these days, I'll blame the cancer for not thinking clearly. Thanks to everyone. I will let you know how it goes.

No news is good news?

I know it's been ages since my last post but it has been a little crazy. I started an oral chemo called Tykerb. Three days later I had seizure in the street behind a parked car. FYI, New York streets are not uncomfortable places to catch some shut eye. I'm not even sure I feel that badly for the homeless anymore. Ok, bad joke but I make bad jokes about cancer. Why shouldn't everyone be fair game? Perhaps I'll become the Chelsea Handler or Kathy Griffin of cancer.

Anyhoo..the "no news" today is that they canceled my follow up brain MRI and, therefore, the follow up appointment with my radiation oncologist, Dr. Narayana. Who is the "they" and why did "they' cancel it? Excellent questions my friends. My insurance company will not approve the scan until it's been three months from the surgery. Folks, I have a fast growing cancer and another three months does make a difference in my world.

WARNING: ICY ROADS, um, I mean, TANGENT AHEAD. It is beyond me that there is a segment of the population that believes our health care system is just fine the way it is. We definitely have the best doctors and technology but how can we access it in a timely fashion with reasonable compensation? Ok, off my soap box. I think we all agree that there is room for vast improvement. So, the new date for my follow up is December 15th.

I suppose I should be thankful that I can spend Thanksgiving focusing on the things I am grateful for this year. There are things to be grateful for this year..right? I jest. My family and I have many, many blessings for which to be grateful, not the least of which are our family, friends and even strangers who have supported us through these incredibly difficult months. The day after Thanksgiving is another story. I have to get a PET scan that day after right after my chemo treatment. I won't find out the results from that scan until the following Thursday so I will have a whole week to worry about that. Whatever the results are I have something to look forward to...a trip to Puerto Rico!

Yes, we are finally getting the heck out of dodge. I think I have mentioned my dear, college friend, Marcos. Well, he and his family have generously offered their beach condo in Aguadilla to us. When this all began back in February, he began insisting we get away for awhile. As you all know that has been impossible because we have constantly been contending with a new development: a seizure, a surgery, a hospital stay. You know...the usual. However, there is a small window coming up when we can take advantage of this offer. We will be there from the 3rd of December until the 8th. We can't wait. And there is more good news on the horizon. Nathan's reconnection surgery has been scheduled for January 5th, 2012. I know a lot of people think that 2012 might be the year of the apocalypse but that's impossible. We deserve a year of joy and well-being. Let's not ruin it with the end of the world, people!

I have promised to be a more regular poster in the past but it's sort of like my promises to stick to a diet for more than three days. Let's be right with ourselves (homage to Joy Demarest), it ain't going to happen folks. Please check the Team Bond Facebook group for mini-updates.

Much love,
Elisa

Day of Gamma Knife-Sept 29th

One Day After Gamma Knife-Elisa

No Sleep 'Til Brooklyn

I'm going to try and make Fridays my regular posting day. We'll see how long that lasts but it's nice to have goals.

It's 4 am and I haven't slept a wink. Actually, an hour ago I was in mid-wink (thanks to 25 mg of trazadone) when the admitting resident threw the lights on to admit my new roommate who arrived at midnight. Oh, did I mention I am in the hospital? AGAIN?!

Yes, if one could earn frequent visitor points at a hospital, I would be in a presidential suite right now. This is my fourth hospital stay since April. It's become my home away from home. So what is it this time? Last Friday around 7:30 am I started to feel extremely woozy. Not a spinning of the room woozy but a stumbling drunk woozy. I was alone with Sadie because Nathan had already left for work. It was significant enough that I called my neighbor/bestie/attorney, Amanda, to come over even though she has a two week old infant, Isaac, and Alice, her toddler.

I was petrified of having an other seizure. I was literally squatting on the kitchen floor praying not to pass out or worse. Thankfully, Sadie was still asleep and only woke up when Amanda and the kids came over.

Okay it's outline time. Writing this series of events in long hand sucks. It's like reading an instruction manual. I am going to go for the Cliff Notes version of the past week's events.

Friday, Sept 16th- extremely bad dizzy spell early in am. Alone with Sadie. Petrified. Call for back up (friends/cousin). Call my docs. Oncologist and neurologist. Onc calls me back in less than 15 minutes. Will consult w/neuro. More symptoms: slurring of speech, sensation of droopiness on left side of my face, left eyelid twitching. Onc prescribes Decadron (a steroid) at 4mg every 12hrs. Thinks it may have to do with brain mets or swelling around them in the cerebellum which is what controls balance. Talk to neuro. She wants to admit me to hospital for observation to make sure I am not having mini-seizures. I beg her not to. Sadie's birthday parties (yes, 2 parties) are sat and sun. Don't want to miss them. She let's me off the hook with the agreement that should I get worse, I will call her and come in.

Sat/Sun/Mon- I feel great. Steroids give me tons of energy and we all have a great Sadie celebratory weekend. Tuesday onc's nurse practitioner, Peggy, checks in on me. Since I am doing so well they are going to drop me to 4 mg once a day in the am.

Wed- I am scheduled for a PET scan to see if the cancer has spread anywhere else. I have to fast from 8 am until the test at 2 pm. I eat 2 hardboiled eggs at 8am. Feel sleepy. Take a nap from 10-11 am. Wake up and feel same kind of woozy as fri before. Try to shrug it off. Take a shower. Shaving my legs. Wooziness gets worse. Abort hair removal. Get out of shower immediately. Get dressed. Hop in car service to cancer center. Arrive at 34th street. Zig zag across the street trying not to vomit. Seek medical attn at cancer center. Onc wants to send me to emergency room via ambulance. I reluctantly agree to hospital but no ambulance and no ER! Nathan arrives. Onc says we can wait at cancer center until there's a bed open & then head straight to admitting.

Ok- I haven't finished this entry but it is now sat evening which makes it almost 48 hours since I started this post. I want to be more consistent about posting so I am doing it now. Yes, I am entering an unfinished post. Is one allowed to do that?  Does anyone do that?  Well, here goes.

This is no cliffhanger but I hope you will continue to check back to find how the hospital stay ends. If just want to skip the rest of details, they do release. I am free. For now.

Halo, Dolly. Well, Halo, Dolly.

I know Nathan left you with a cliffhanger in his last post and there was good reason.  However, before the "bad" news, more on Sadie.  Tuesday, September 13th, was her 2nd birthday.  Dala (the nickname for Nathan's mom) made her famous vanilla cake with extra special chocolate frosting.  It totally lived up to the hype from Nathan and his brother who enjoyed it each year on their birthdays growing up.  As you can imagine, our diagnoses make us appreciate each day and cherish each milestone a little more.

So now...on the new season of Got Cancer?.  The shit hits the fan.  This is the shit...Nathan and I are crossing the street one day and I grab on to his arm suddenly. He looks at me with that "are you going to have a seizure look?"  Good lord, is this how we're going to spend the rest of our lives...worrying about me having a seizure at any moment?  I hope to god not.  I've got enough to deal with already.  I don't need to be under constant scrutiny.  He asks if I've told anyone yet to which I reply, "No," with an indignant smirk on my face.  "You should definitely tell Dr. Vazquez (the neurologist)."  "Okay, okay...I call her." Again, are we going to worry about every sneeze, every cough, every wobble?

A couple of days later, I am at my weekly consultation with my oncologist, Dr. Volm.  Everything looks good.  Then he routinely asks, "Is there anything else?"  "As a matter of fact, Nathan said I should tell Vazquez I've been a little off balance lately."  "How long has this been going on?"  "Um, a month I guess."  "Well, let's see.  You're last brain MRI was back in April. It's probably nothing, but, you know me, I'm very conservative so let's go ahead and schedule another one." Do you see it?  The shit.  It's looking right at the fan.  MRI results...I have brain tumors.  Bam. Fan.

Are you fucking kidding me?  Perhaps I said that on the post where I found out that in addition to my husband, I, too, had breast cancer but this is really getting out of control people.  Where's that goddamn lottery ticket?

So I didn't want to share this "bad" news until I could hopefully share an upside, if there was going to be an upside.  And there is...sort of.  There are 5 extremely small lesions in the brain.  I read the report.  It said extremely small so I am focusing on that.  Four of them are on the cerebellum which controls balance. Ding, ding, ding!  So I guess I have to give credit where credit is due.  Nathan saved my brain.  The other lesion is on the dura of the left parietal lobe.  You all have Google.  Please look it up.  I'm not up for an anatomy lesson right now.   How is this possible when last you heard the other metastases in my body were responding well to the chemotherapy and Herceptin?  Well, turns out that those drugs do not cross "the blood brain barrier."  Therefore, cancer cells can cross that barrier and allow other tumors to grow.  The brain becomes their safe haven where the drugs can't find and attack them.   Anyhoo, the plan from Volm's side was to add one, possibly, two new chemos to my regimen.  He also wanted to consult with the radiation oncologist, Dr. Narayana, to see what he would recommend as surely I would need some form of radiation.  Dr. Narayana's return from vacation had been delayed because of Hurricane Irene so we couldn't meet with him for a week, hence, the cliffhanger.  So back to Narayana who is another excellent physician at NYU.  His recommendation was to treat the tumors with Gamma Knife Surgery.  It's very high tech and the "surgery" part is a bit of a misnomer.  It's also extremely better than the alternative which is whole brain radiation (WBR).  The short term effects of WBR aren't bad but a couple years down the road there would likely be significant cognitive impairments.

This is what the procedure entails.  Narayana and the chief of neurosurgery, Dr. Golfinos, will be working in tandem.  I was hoping for McDreamy, but, alas, he's not actually a brain surgeon, only he plays one on tv.  I was also hoping for open brain surgery because that seems more dramatic and supports my theatrical tendencies, but, alas, no dice there either.  So Gamma Knife.  How does it work? A metal "halo" (see title's musical reference) with four points is drilled into the first layer of my skull.  This creates a stationery grid of brain.  Using a super duper MRI, they will map the location and size of my tumors a.k.a. lesions, and then, using 200 points of high dosage radiation zap the tumors.  In very simple terms, it's like laser hair removal but this only requires one session.  In fact, it's an outpatient procedure.  I will go in around 5:30 am and be out by 1:30ish pm.  I'll even be awake.  They'll give me some Ativan and another drug which I can't pronounce or spell and is the drug that killed Michael Jackson (but he abused it) so not worry.  The lesions are extremely small and the doctors are very hopeful that this will quickly and easily remove the visible metastases.

Again, it's definitely not good news but it could be worse...I guess.

Mom interrupted.  Sadie just got home from nursery school so I'm signing off.

Sadie Sidebar

Just a reminder to ourselves and to all, this is a blog about our whole family.  Not everything in our lives revolves around our cancers.  Therefore, we wanted to share this little tidbit about Sadie.

Monday night I was giving Sadie her bath and she had put all her bath toys and all the shampoo bottles into the water.  When Nathan walked in to join us he asked in a surprised voice, "Who put all of these toys into the tub?"  Sadie searched the room with a look of astonishment on her face, as if she, too, were surprised by the scene.  Nathan prodded, "Did Sadie do it?"  "Nooooo," she said.  "Did mommy do it?"  Again she said, "Noooooo."  "Well, who did it then?"  Once again she searched the bathroom for a culprit, the wheels spinning in her head, and finally blurted out, "Dorian!"  FYI folks, Dorian is her cousin and lives in Savannah, Georgia.  It was her first lie!  We were so proud.  We had been told by other parents that lying is a big milestone for a child's development and apparently science has proved it (see links below).   Listen, we know it's not rocket science, but these are the ways in which our child amazes us and keeps us in the present moment.

www.bbc.co.uk/news/10119297
http://www.emaxhealth.com/6705/when-children-lie-they-are-simply-reaching-developmental-milestonehttp://

THE CALM BEFORE THE STORM

Let me just explain right at the start that what I am about to say (whine, bitch, complain about) in no way changes my gratitude for all that I have nor does it change my positive outlook on my life. It’s just that, although my intellect and spirit can see all that I am blessed with, my emotions have just stuck their fingers in their ears, closed their eyes and gone “lalalalalalalalalala” in the corner. It isn’t listening to all the good news. So let’s review the good news first to see if that helps.

I am finally starting to feel less pain post surgery. It has taken 6 weeks but I am finally turning a corner physically. Elisa is having a much easier time dealing with the chemo each week now that they stopped giving her carboplatin. Her blood counts have been staying up, and she is even growing hair back! Sadie is as amazing as ever. She is talking in little but complete sentences. She is 36” tall and 30lbs of muscle. She can lift just about anything she wants. Her laugh is even louder and more delicious than ever. She is super cuddly with mommy and very gentle around daddy’s boo-boo. Sadie and I have breakfast together every morning again. We sit on the couch together and share a piece of toast over while watching Elmo or Barney. I have spent quality time with more of Elisa’s college friends that have come to help (they really are about the nicest group of women you could ever hope to meet). I have also been able to see many of my friends including my brother and sister-in-law as they stayed with us to help. My surgery went very well. I was on the operating table for a shorter than normal time expected - only 3 1/2 hours. Eighty percent of the tumor had responded to the chemo and radiation treatments so they only had remove the remaining twenty percent. Dr. Matin Weiser is really quite an incredible surgeon, and very nice too. I was out of the hospital in record time. We have continued to receive so many wonderfully kind and heart warming e-mails from all over. Quite honestly, I could go on for quite a while about how many gifts there are in my life, and I have. I do. Over and over.

My emotions just don’t give a shit. They are all over the place. They are favoring the darker more sorrowful side. It has made writing and talking to people about what is going on difficult. It is hard to not want to be or feel the need to be happy around those that you love and want so badly for you to feel better. It is difficult to no be able to do this to pull myself out of the funk. I keep feeling the weight of the year, the weight of the cancer, of my cancer, of Elisa’s cancer, of Sadie’s parents having cancer. In the beginning, it was almost easier to deal with. Things were bad, but they were busy. Everyday was a new test, a new doctor, new news, more information to think of and to process. It kept the mind and body occupied. You are sprinting at the beginning. Here’s the thing, Elisa warned me “it’s not a sprint, it’s a marathon.” Plus with Elisa’s type of cancer, there is no finish line. They will never refer to HER2 positive metastatic cancer as in reemission. She will have treatment for years. I have just hit that wall (all you runners out there know what I mean). It has been almost a year for me and I can count on one hand the number of days that I have actually felt physically well. It has worn me out. I am also admittedly not a fan of having shit continuously pour out of a hole in my abdomen into a poorly designed plastic bag. On Friday, August 25, I will be starting chemo again. I get to add a second object hanging off me, my 48 infusion bottle of chemo. I worry about what all this is doing to Sadie. She is so aware and tuned into her surroundings. She feels and senses everything. The first thing she says in the morning is “Daddy, shirt on!” She wants me to cover up my “boo-boo bag.” But it isn’t because she doesn’t want to see it. Heck she asks to see it all throughout the day and laughs when I show it to her. I think she senses my embarrassment about it. She also likes that she skinned her knee and has a boo-boo too. I think she wants to have what mommy and daddy have. Ever since she scraped her knee she likes to point out all of our injuries in turn, mommy’s then daddy’s then her own. It’s amazing and heart breaking. But perhaps this just means that she will grow up to be a caring, empathetic person who wants to help others. Maybe she will cure cancer because of all this. I just wish she could learn the lesson in a different way. It’s a hard lesson. The day to day grind of it....it’s relentless. It’s the bad sleep and crazy dreams from the pain medicine. It’s the 2 times during the night that you have to stumble out of bed to try and empty an over full bag of shit without getting it all over the place. It’s the limited diet that you can eat, again. It’s the not being able to help out around the house, or pick up your baby when she is crying at night. It is all the little things. It doesn’t let up. That is what is so hard about the cancer for me. It is as if a friend of a friend needed place to crash for the night but then moved in without asking, ate all food, never cleaned, used your toothbrush and then used the toothbrush you bought to replace the first toothbrush. However, it will get better. It is getting better. It really has to.

But let me end on some good news. It was six weeks that I wasn’t allowed to pick up my daughter do to the surgery. Sadly, she just stopped asking after the first week and that killed me, but I am cleared to pick her up now. It’s a very bright spot in my day, getting to hold her when she comes home from daycare.

This was the post I was going to post about three weeks ago. See the next post to understand why it all went to hell.

-Nathan
PS-I don't mean to create a cliffhanger but since blogs are read "backwards" I want everyone to get a chance to digest this chapter before moving on. We'll post again at the end of this week or next weekend.

The Bandwagon

It is with tremendous joy and great gratitude that I finally get to write some good news about Elisa! Many of you have already heard, or seen on the Team Bond Facebook page, that Elisa had a CT scan late Thursday and that we received the results this morning. If you have, I bet reading good news like this again isn’t a big drag: The tumors that were on her pelvis and spine have left some small amounts of scaring where they used to be (as in they have been evicted, kicked out, killed, ran away, beaten off, ousted …..). Her liver also shows great improvement. Although many metastasis remain, many are gone! It is nice to see that although Elisa and I seem to get our bad news together, we also get our good news together. I have been over the moon with happiness for most of the day. Thank you all for the continual support and optimism you have given us throughout this journey. I am now really starting to feel that we have rounded a metaphorical corner and are able to see the home stretch.

The week leading up to this good news was a long and stressful one. However I think that this has made our collective sign of relief that much greater. Elisa and I had been sick for several days last week, and were feeling really under the weather by the weekend. Monday morning Elisa developed a fever and had to be admitted to the NYU hospital for monitoring. Her white blood counts were very low – 500 k/ul (the bottom end of normal is 1,800 k/ul). So she was given the regular course of treatment, and still on Tuesday they had dropped further to 200. By Wednesday they were all the way down to 100, with a platelet count of 41! Although the fever broke and she was feeling better (other than not having any good TV to watch) they won’t let you go home with numbers like that. They did a CT of her face to make sure things in her sinuses were ok and to see if they needed to drain them, which they did not have to do. On Thursday her count started to rise, reaching 200. Before coming down with this cold, Elisa was scheduled to have her progress PET scan on Tuesday to see how the bone and liver tumors were reacting to the chemotherapy. Unfortunately she was not able to have this done because of being admitted. Which as it turns out wouldn’t have happened anyway as our insurance changed their mind for the third time in a two-week period and re-denied approval of the procedure as “not medically necessary”. Really? Really?
So on Thursday afternoon they preformed a CT with contrast (in lieu of the PET scan) to look at her tumors. We got those wonderful results you read about at the beginning of this update from that scan. Also her WBC counts are up to 200 and if they continue this trend they will let her come home tomorrow.  Which is really good news, cause Sadie and I are missing her something terrible. In fact Sadie has been pointing to the computer often and saying, “I see, mommy I see?” It seems she has a good understanding of how Skype works. So Sadie and Elisa got to talk over the computer last night. But then this morning Sadie wanted more, so we watched videos of her and mommy for 15 minutes before she went to daycare. It is heartbreaking in the sweetest way. I have been really trying to soak up my time with Sadie this week. I am not looking forward to being apart from her and Elisa for the week after my surgery, but riding a wave of good news into it sure does make it a lot easier to bear!

A REALLY, REALLY HAPPY FATHER'S DAY!!!

Normally, the phrase "increases your chance of long-term survival" is not one you get excited to hear. I mean who really wants to discuss "chances" of survival? However, these words were music to my ears this week as they came from my doctor.  Why the increase?  Well, I am happy to say that my post radiation MRI and CT scan showed that my tumor is all but gone! Yep, that's right…we have good news coming to you from the Bond family! Feels like a long time, I know. And I am sure that I would not have gotten such "excellent" results (more doctor’s words) if it was not for all of the amazing support (mental and physical) love, prayers and  positive energy that so, so many people have been sending to my family. You all have bolstered my spirits through my journey so far. I am now half way through my treatment plan and feel like I can see that light at the end of tunnel (and no, it's not a train!). So thank you all! Thank you, thank you, thank you! Next we just have to get Elisa on the same good news wagon.

Since her release from the hospital after her seizures, Elisa has been battling the effects of the new medications.  She has been suffering from both physical and emotional side effects, which is why she still hasn’t been posting on the blog.  I will let her share as she sees fit at a later date.  I can tell you that she has been having difficulty with her blood counts (both red and white) and may be having a transfusion this coming week if they have not come up enough or have dropped further.  One of the big problems with the low counts, other than being winded from something as simple as scratching your head and being very vulnerable to infection, is that it messes with the chemotherapy. They can't keep her on a regular treatment schedule. The week before Father’s Day they had to skip it all together.   Then Elisa had to give herself injections into her belly for three days with a medication to stimulate her white blood count. Yep, she is pretty badass.  I would have fainted doing it. There was a little silver lining though. Since she didn't have chemo she actually okay over the weekend and so did I. So we spent the weekend at her fathers house where there is a backyard that we could play with Sadie in and a pool near by that we could swim in.  We did have to lather on the 100 SPF sunblock because we’re photosensitive from the chemo but it’s a small price to pay.  

We had one of the best couple of days that we have had in a long, long time.  Sadie went in the pool every day and took to it like a fish. She was not afraid of swimming at all, and at night was still chanting "kicking, kicking" as she lay on her back and wildly waved her feet in the air. We had wonderful tea parties in the backyard with her toy tea set that I gave her that weekend.  I have been holding onto it for about a year. It was really amazing to watch her spend hours setting up the teacups and pouring imaginary tea for everyone. She even made sure we had sugar and cream! It is one of her favorite things to play with now, even at 6 AM! She loved being chased around the yard and taking walks with Grandpa who made us yummy big dinners each night.  Sadie starting calling him “Grandpa Pasta.”
 

It was really great to get away and we all felt very refreshed from it.  It didn't hurt that Sadie even slept 11 hours one night! It is these times with my girls that make going through treatment seem like just a minor irritation if it means I will get more of them. I am only sorry there was not more of the family there to see and have all the fun. We hope we get to spend some more weekends like this with the rest of you guys really soon. We love and miss you all!

Unfortunately, Elisa’s counts were still low this week so they decided to give her a partial dose of her chemotherapy.  She has been really drained and then Sadie got an ear infection with fever and a terrible cough.  I have also been fighting a cold but am not complaining because I am still flying high from my good news!  I hope you enjoy two of my favorite pictures from our Father's Day weekend.

Shake, Rattle and Roll With It!

One of the most difficult things that I have found about dealing with all that is happening to our family (and I mean the cancer) is the frustration of having to watch Elisa go through it. The physical side effects of the drugs are difficult enough to deal with never mind the mental side effects that the diagnosis and exhaustion bring with them.

So the last thing that we were expecting (or needed) was another diagnosis of another disorder. And one would think that the odds would be on our side at this point.  But clearly someone thinks that we are really way too strong and that someone is looking to see how much we can really deal with. 'Cause guess what? Wait for it... Elisa has epilepsy!  "What the fuck?" you say! Well, I say it too. In fact, even the doctors say it. It is always fun to see doctors break their clinical composure.  Sorry that it is me writing again, but I think you may have guessed by now that Elisa is dealing with a lot and is not up to writing about it just yet. So you are stuck with me. So here is what has happened.

About two and a half weeks ago Elisa and I were enjoying a calm moment together sitting on the couch towards the end of the day.  I was in my last week of radiation treatment so had spent the majority of the day sleeping. We had been chatting about the Oprah episode we had just watched and Elisa got up to go to the bathroom. After about a minute, I heard the bathroom door slam and the trash can rattle. I called out to Elisa but there was no answer. I called again loudly and still nothing so I jumped up and rushed to the bathroom (very happy to live in a small apartment at that moment so that I didn't have more than 20 feet to travel). I found Elisa on the bathroom floor having a seizure. I still find it difficult not to start crying when I recall that moment. It is one of the most terrifying moments of my life. Luckily, I had read up on what to do just days before. Unfortunately, there is not a lot that one can do. So I cradled her head in my lap - making sure that she was turned on her side and held her. I called 911 and her mother.  Eileen was out buying some groceries for us and was near by. The seizure lasted for what seemed like an eternity, but in reality was about 3-4 minutes. When she started to come out of it she was very disoriented and was trying to stand up with great determination. So I carried her to the bed to lie down and tried to explain that she had had a seizure. This was very confusing to her.  She thought that I was confused and was talking about the seizure she had had in April. Elisa's mom arrived and then the paramedics were on the scene as well. So, again my wife was off to the hospital. They really should have a punch card for frequent visitors.  I think we would already be getting our free hospital stay by now if they did! And once again I was stuck not being able to be with her because my stupid cancer.

A few hours after being at the hospital, Elisa had a second seizure. This time she severely bit her tongue. The worst damage to a tongue her neurologist has ever seen. It still has the imprint of her teeth in it today. I am going to truncate the story of the hospital stay.  She was in the hospital for four days and I only got to visit her once briefly on my way home from my final radiation treatment so everything else is secondhand info. Elisa was under observation (via 24-EEG and 24-hour video monitoring) the whole time. The final out come is that she has Juvenile Primary Generalized Epilepsy. Juvenile refers to the age of onset.  Elisa had one seizure at 9 years old. The primary part means that she was born with it. Generalized refers to the fact the seizures do not originate from one spot in the brain; they fire from all over the brain. 

So why the flare up now?  Well, they believe that due to the chemotherapy combined with sleep deprivation, exhaustion, stress and perhaps some hormonal influences as well as the other medication she was on and off of that her threshold for seizures has been greatly reduced. So now she is in the process of having to slowly incorporate news drugs (as some of you may already know she was on anti-seizure meds due to the seizure she had in April - they have doubled the dosage but are gradually switching her to a new drug to alleviate the side effects that are rare but, of course, she is experiencing).  It also means new restrictions in her life until we are sure the new medications are working to control her epilepsy. Some of the restrictions include no baths for six months, no driving for six months, no swimming alone for six months, etc. It is a lot to add on to what she was already coping with. But may I just take a moment to say how amazing my wife is and how proud I am of her courage and in awe of her strength I am. She is as funny as ever! As feisty as ever! And as caring and giving as ever.  Of course, all this is not easy to deal with, and, of course, we curse about it and cry about it. But she handles it with such grace that most people would never know the burden she bears. She is a truly amazing woman.  Our sixth year wedding anniversary is this Sunday, but she has showed me a lifetime of courage and strength and laughter!

I would also like to mention and to thank a few more amazing people.  Elisa’s mom, Eileen, of course, for not leaving her side at the hospital for almost 2 days. Her incredible bosses Frank and Aaron who showed up at the emergency room within an hour and ran relays so that one of them could keep an eye on Elisa and grab Eileen who was trying to get cell service in front of the hospital and brought food to Eileen and Donna at midnight.  Her father, Al, and stepmother Lynda and "Aunts" Donna and Bonnie who also helped manage the emergency room nightmare.  Her wonderful friend Melanie for having her babysitter watch her three kids so she could sleep in a chair over night at the hospital with her. The amazing Betsy (the incredible photographer) who flew in to stay for four days - the first two being in the hospital sleeping on a skinny fold up mattress with all her luggage in tow since she took a cab straight from the airport. Maia, Lara and Rachelle for taking care of Sadie for those four days since I was too weak to do it. Our dear friend and neighbor Amanda for checking in on me everyday. Thank you also to Lorin who came to stay with me the first night, busted foot and all. Also, to all of the wonderful army of friends that called and sent messages and prayed and sent healing energy and good thoughts to help Elisa and myself get through those tough days. It seems the darker the day, the more light I see there is in our lives. Thank you all! We love you.

I have also added some new pictures of our darling Sadie to the slideshow. She is just such a remarkable little girl. She uses "please" and "thank you" and is even speaking short sentences in 3 languages! There are so many wonderful stories to share about her, but I have run out of steam.  The pictures will have to do for now. I will try to get some of the stories about her up here soon.

Break Out the Kleenex

This was supposed to have been posted back in April.

My dear friend and fabulous photographer Betsy Prieto had the foresight to think I might want some family photos before my hair fell out and she knew there was a short window in which we could make that happen.  Between returning home from a family vacation and her only sister's destination wedding, Betsy hopped on a plane to New York for 3 days.  All the stars aligned that week because my two other Vandy friends, Andrea Accardi and Laura Gentles, were going to be visiting as well.  Andrea had randomly chosen her dates first, then Laura's OB said this would be her last chance to travel as she was VERY pregnant and Betsy only had those few days between the family vacation and the wedding to make it happen.   As luck would have it,  it also turned out to the be the week for the taping of the pre-interview for the Today Show.

There was a bit of a slumber party feel to our home for those few days and I loved every second of it.  I have to say, I am one of those people who has fantasies of communal living.  I'm not so hot on the BIG LOVE  communal living...I want my own husband.  I do, however, imagine a Kennedy-esque compound where all my family and friends have their own little house on a huge piece of land and there is a big barn where we gather for social events.  Okay...now it's sounding a bit like cult.  I just want to be close to all the people I love.  Is that so much to ask for?

Anyway, back to the photos and my hair.  On precisely the morning of the taping of the pre-interview, I hopped in the shower and as I started to shampoo my hair it began to fall out in chunks.  My hair was rather long at the time and so as it broke free my scalp and headed south it stuck to my back.  I looked like the swamp thing.  I swore I didn't care about losing my hair but here was the moment and I began to cry.  I shouted to Betsy to grab her camera.  I don't know why I wanted to document this moment but I felt I had to be honest with myself.  This was going to be harder than I had anticipated.  She shot me coming out of the shower and combing my hair as I normally would but this time the wide tooth comb harvested innumerable locks of long wet hair.  "Why, today, of all days, do I have to deal with this?  I just want to look presentable for this interview.  Motherfucker!"

Laura came into the bathroom as I was intermittently holding tears back and letting them flow.  "I know it's tough," she said, "but have your moment and let's move on.  It's going to be a busy day."  I fucking love that girl.   It's exactly what I wanted/needed to hear.  I had said that losing my hair was not going to be a big deal for me because I had always fantasized about shaving it off at least once in my life anyway.  Okay...so it was bigger deal than I thought but we had shit to do and not a lot of time. I got on with getting ready for the day which included blowing out my hair.  It continued to be a stressful process because not only were many strands falling out but the ones that were holding on were fraying.  I did not see a good hair day in my immediate future.  Of course, there was a giant white hair that Laura noticed and tried to pluck but, wouldn't you know, that was the one was making his last stand at the Alamo and wouldn't budge. Seriously, God,  you have a sick sense of humor.

I did manage to blow it out and look "myself" that day and for the interview.  But we hadn't had enough time or energy to take any photos.  The next day Betsy insisted we take some family photos before she took me to my oncology appointment and chemo session.  Sadie was about to be picked up for day care so we had 20 minutes to make some family memories.  Even with a slight drizzle, she made it fun.

Somehow we made it home from chemo with a little time to spare before Betsy had to head to the airport.  My hair had been falling out for two days and was really driving me crazy so she suggested we just go for it.  I called my mom and cousin Lara to come over to create a bit of celebratory feeling.  We put music on it and my mom started putting my hair in multiple pony tails so I could donate the hair to Locks of Love.  The rest is best told in the pictures Betsy captured.  See the link below.  And have Kleenex ready, the soundtrack can really push you over the edge.  Thank you, Bets.  I love you!!!

Nathan & Elisa Bond from Betsy Marie Photography on Vimeo.

Still Hanging In

This is probably a poor choice of words, but I'm still alive.  I know I haven't written in a very long time but in my defense I do have cancer.

It kind of sucks that I haven't been keeping up with posting on the blog because I feel like I need to recap the last 6 weeks from my perspective but honestly I can't.  I can't even remember what I had for breakfast today.  The chemo brain (a.k.a.-lack of short term memory) has really kicked in.  I feel generally stupid a lot of the time.  I think I can say that, right?  I mean there isn't a lobby for stupid people out there, is there?  If there is then they aren't that stupid because they've organized themselves and are probably trying to become a protected class.  Frankly, stupid people should be a protected class and we should be the ones protected from them.  But I digress.

If I sound a little mean today it's because I haven't been feeling well all weekend.  Why?  Um, let me see...oh yes...I HAVE CANCER!!!

I must say I am so over it.  And I'm even more over Nathan's cancer.  His cancer is way worse than mine.  This chemo/radiation regimen he is on currently is horrendous.  He leaves every morning at 6:30 am to go into the city, has his radiation treatment at 7:20 for 20 minutes and then he's back by 8:30.  He then spends the rest of the day in bed or running to the bathroom.  I have never seen him so wiped out.  He can literally sleep for hours and has no energy to do anything other than watch multiple seasons of 24 or play RISK on his iPhone.  I know, I know.  We missed that series when it was on in real time but thanks to cancer we are filling in our pop culture knowledge gap on all things related to Jack Bauer.  

While I am discussing his chemo/radiation regimen, I just want to thank the many volunteers who are waking up with roosters to chauffer Nathan to and fro.  We know it's not the easiest way to start your day so thank you again.

I'd like to send a belated thank you to Nadia Ackerman and all the musicians who I heard put on an amazing concert.  I have to say I was truly bummed to have missed it.  I mean a concert with all our favorite songs.  Who wouldn't want to go to that? Stupid seizure.  The only good part about being in the hospital was that I got two full nights of uninterrupted sleep.  That hasn't happened in the last two years.  I might as well have been at Canyon Ranch. 

A big thanks to Todd Lambrix and the many artists who donated their work to the art benefit last week.  It was such a brilliant idea and friends were texting us all evening about what piece they were hoping to snag.

LIVESTRONG also donated the proceeds from their booth at the NYC 5 Boro Bike Tour to us.  In fact, there are many events being held in our honor and for our benefit.  We can't thank you all enough not only for your generosity but also for your good wishes, time, effort and prayers. 

I'm going to sign off now because if I write anymore I am going to over think it, delete it or keep it as a draft and it will be another week before I write again.

xoxo, Gossip Girl...oh no...did I just admit to that?!

Blog Interrupted

Writers note: This entry was written in two parts – about a week between them. So it has a major jump half way through.


So I am sure that you are all missing wife’s witty prose by now, as am I. This cold that she has had for over two weeks now just won't seem to go away. It is one of the drawbacks of cancer - suppressed immune system.  Her mother has also been very sick this whole time. This has added a new challenge as Eileen was one of regular babysitters for Sadie, but also such a major emotional support for Elisa (well for anyone around her, including me).
   So you are all stuck with me for a bit longer. As I think back over the couple of weeks I am not really even sure where to start. Time, when you have cancer seems very different. A week seems more like a month, a day - a week. Not in productivity however (we can't seem to get even the smallest things checked off our to do list), it's more in exhaustion.  At the same time the days are slipping by quickly. To quote David Eggers "I am losing days like pens in a couch". Elisa and I were talking about this the other night. When we first got our diagnoses we both had this thought that there would be lots of long boring days of laying around (feeling like shit of course), surfing through bad television and reading books. Let me tell you that the cancer vacation package you see advertised on TV is a scam!  We are having a hard time even making room for naps (our doctors are not terribly excited about this by the way).
   So I guess let me start with some good news! Yes, that is right: GOOD NEWS! I have finished my first round of chemotherapy and had my MRI to check my progress..... My tumor has shrunk! Shrunk enough to make my oncologist smile!!! I even thought I might get to skip ahead in my treatment, as if I had aced an advanced placement test for a college credit. No dice. This does however mean that the tumor has been very responsive to the chemotherapy, and will most likely respond well to the next stage of treatment too. So now I have been approved to move onto radiation and chemo. I start Monday. I will have radiation five days a week for five and a half weeks and have a continual infusion of chemotherapy the whole time as well. I feel really good to have finished the first stage of the treatment. I feel like progress is being made. I have to admit here that I am a bit nervous about this next stage. Having the bottle of chemo attached to me for the two day infusion was not particularly fun so I can only imagine what it is going to be like having it hooked in for almost six weeks. Since the needle that infuses the chemo is only held in place by a bandage, it cannot get wet. This means no showers folks. They now sell these patches you can place over the port area to prevent water from reaching the dressing that might splash up on it, but you still are not allowed to have water directly hit the area even with the aqua guard. This is particularly annoying for me, as Elisa will attest too; I love to stand in the shower. It is one of the more relaxing times of the day for me. So it looks like weeks of sponge baths are ahead. Among the many lessons that I am taking away from having cancer: a new appreciation for indoor pluming.

Here is that major jump in time!

So cancer does not seem to give a fuck about your plans. The prior part of the post was written last weekend, and a lot has happened since that made finishing it impossible. So I am just going to make the transition without a CNN worthy segue.
On Monday morning I was in the shower, taking my last regular shower I was talking about earlier and Elisa was mediating in the bedroom. When I got out, I heard Elisa call out to me faintly. I could tell by her voice something was wrong. I ran to the bedroom to find her lying down, crying on the bed. There was blood on the pillow under her head. She was confused and wasn't able to tell me what was happening except that her tongue hurt and that she was nauseous. She opened her mouth for me and her tongue was incredibly swollen and bleeding from a couple of different spots. Then I noticed the large swollen red area on her head. I don't think that there have been many times in my life when I have been more scared or felt as helpless. She told me she didn't know how she got on the bed and that when she woke up she was very confused about why she felt bad and was trying to figure out if she was remembering correctly that she had cancer. I called her oncologist and got us ready to go to the hospital. Skipping over some details, two hours later she was admitted to the ER. Her mother was with us now and so we waited as they took blood and started to run tests. I had to leave shortly after they admitted her to go to get my first round of chemo and radiation. I was extremely frustrated and saddened that had to leave her side to go to my treatment. Stupid fucking tumor.
My plan was to come right back after my treatment was finished. Again, cancer does give a fuck about your plans. When they ran my blood work (they always do this before chemo) my white blood count was very low, almost to low to start, but they gave me my seven-day infusion bottle. However they told me that I could not risk going back to the hospital to see Elisa. My heart sank. I was not even going to be able to help comfort my wife. I didn't know I could feel even more helpless than I did when I found her that morning. This is where I would write a string of curses to express my frustration, but you get the idea. So I was left to go home and wait for news about her. Sadie was going to home from daycare soon. The news was scary. She had had a seizure.  They wanted to run an MRI to see if there was spread of the cancer to the brain and if that is what had caused it. They were also going to admit her to the hospital overnight. Her father and mother were there with her, so I know she was in good hands as far a support. So now it was the waiting that was driving me crazy. Luckily it is impossible to be around Sadie and not feel joy, so my spirits were lifted when she came home.  Our dear friend Tanya came over to stay the night and help out with Sadie. They would not get the results form the MRI until the next day. Elisa's tongue was too swollen to talk, so we texted each other our goodnights.
In the middle of the night Sadie came down with a fever, luckily not too high, but enough to make her miserable and so I brought her I to bed with me to sleep. She tossed all night. So there would be no daycare the next day. I had radiation again in the afternoon so cousin (and saint) Rachelle took the day of from work and watched Sadie. By late morning the MRI results came back clear! Huge sigh of relief! However during the night her white blood cell count dropped to a critical level. They moved her to a private room and all visitors had to wear gowns, gloves and face masks due to the risk of her catching anything from them. They gave her some meds to bring her levels back up but she would have to stay another night in the hospital.
Meanwhile the doctors told me I was still not allowed to go see her and that I should not be around Sadie either until she was better. Really?!!! WTF! Now I can't help either of my girls. I need a stronger word for “frustrated” here! So Sadie stayed with Rachelle and her grandmother that night.
Sadie slept well and had no more fever that night, she could come home the next night. Elisa's white blood count was back up and she would be home that night too. Big smile! (We are up to Wednesday night now). She would have to go in for her chemo the next day. Of course they would have to check all her levels to make sure she was in good enough shape to handle the drugs first. So Thursday when they tested her blood they found that her red blood cell count is critically low. They only gave her one of the two chemo drugs. They are going to have to give her a blood infusion on Friday to get her levels back up. Again, WTF! Also they have started her on anti seizure meds and is not allowed to drive or be alone in the house when she takes a bath for three months. So that is where we are now. I am on my way for my fifth round of radiation and to have my white blood count checked again and Elisa is sitting through a six-hour blood infusion. It has been a long week. Here's hoping next week is a little less interesting.

STOP! Potty Time!

Okay there is a blog post in my drafts box from last night when I was up late night for no good reason but I haven't finished it yet.  In the meantime, we have breaking news on the Sadie Abigail front.  After about 20 minutes of sitting on the potty (the training one) success!  Sadie made an actual pee pee in the potty.  She was thrilled as am I.  Her cousin, Fiona, and bestie, Alice, have been making great strides on the potty training front this week.  Thank goodness for some positive peer pressure.

Sadie Time

I am only going to give a brief summery of what has been happening to the two of us, as I will be letting Elisa fill in a lot of the details. I am doing this for three reasons. First, (my own selfish reason), because I love reading her writing. It always makes me feel better. Secondly, a lot of what has been happening has to do with her and she is the best person to share those thoughts and feelings. And lastly, but by no means least, I want to keep ya’ll up to date on the most important part of our lives – Sadie.

So quickly us….

It has been a fairly crummy week health wise. The Sunday before last I had to go to the Urgent care center due to having a fever (they make you go if you have a fever over 100.4  -mine was 101.3). Of course this happens in the middle of the night. So off to the hospital I went at 11:45 pm. Thankfully, our good friend Caroline was staying with us and was able to take me to the hospital. Our hope was that Elisa would be able to get some sleep as well as Sadie. This has been one of the tough spots with both of us having cancer. We have had to decide that it is healthier for us if we try to not go to each other’s appointments. Otherwise, we would never get any rest. But, of course, our hearts are not so fond of this idea. Anyway, Elisa of course didn’t sleep because she was worried. Finally I received the all clear at 4:30am -just one of those fevers that can’t be figured out. This is what led to the onset of the soar throat and cold that just won’t leave Elisa alone. She has been coughing pretty much none stop for the past week. Otherwise, things have been pretty much run of the mill cancer patient around here. Shaving heads, forcing food down, not sleeping, getting chemo, you know, the usual suspects. But again, Elisa will be putting her wonderful humor to all this once she kicks this cold.

Warning: Father gushing over child ahead!

So on to the amazing Sadie. The Sadie that clearly has been working on her bachelors of engineering while at daycare. One night last week (from her crib) she used her crazy strong, long arms to grab items from a near by table to build a rudimentary ladder and climbed out of her crib! That is right, Houdini is back! So we have had to change her crib to a “big girl” bed. She loves this! However I can’t help but think that this is just step one in some grand master plan she has been plotting. Time to hide those keys to the car! Good thing she is still a couple of weeks away from being able to turn the doorknobs! She is also starting to say every word that she hears. For those of you that live in New York, heck, even if you have driven through New York, you will know that this means your kid is going to hear some interesting (colorful) words. Like (as Sadie says) “’Oly Shh”.  Good thing she can’t read this blog yet! She is also starting to string those words together. My favorite paring so far, of course, has to be “Daddy do”. Yesterday morning she woke up and said, “Where are you Bunny”, - Bunny being her new stuffed animal companion (poor monkey…his heart broken). Ahh, the first in a long line of heart broken men I fear.

She is also quickly developing a strong sense of self. She is playing with her toys on her own for longer periods of time and carrying on little conversations too. I can’t wait until they actually contain words I can understand so I can listen in on her amazing thoughts!

She also knows what she does not want, and knows how to tell you. Last night Elisa and I were giving her a bath. Typically she loves this and even helps to wash herself. However, last night she was not into having her hair washed. When I started to lather the shampoo she absent-mindedly began to say “No”, but continued to play without looking up. As soon as she realized that this was not deterring me from washing her hair, she looked up, furrowed her eyebrows, pursed her lips, stared me square in the eye, and with perfect enunciation, yelled “NO!” Sorry Sadie, we didn’t mean to gloss over your wishes, but Elisa and I busted out laughing. It was the cutest face anyone has ever yelled at me with!

It is so amazing to watch her make connections between things too. When we first cut Elisa’s hair, we wanted to make sure she was there to watch so that it wouldn’t be a shock to her. It may have helped that my hair is already short, because she didn’t even seem to notice. We put Elisa’s hair into several ponytails so that they would stay long enough to be able to donate them later to Locks of Love. We laid them out for the night on the dinning room table to be packed up later. The next day we looked at the photographs that our dear friend Betsy had taken of the haircutting event. She had posted them online, so Elisa, her mom, Eileen, Sadie and I were all sitting at the table looking the pictures on our laptop. Betsy had created a beautiful slide show and put music to it, so it was very moving to see the images, and Elisa started to cry a little (me too). Sadie looked over at her (she was sitting between us in Eileen’s lap) and saw that she was crying. She reached out and placed her hand on Elisa’s shoulder in what could only be interpreted as a consoling manner. This, of course, did not help me stop crying. Next she points to the ponytails that are lying just beyond the computer and says “Mama?” 

She leans forward and tries to grab one. So I hand her one to hold. She lifts it up and says “Mama” again as she tries to put it back on Elisa’s head (the right direction I might proudly point out). If I ever thought that she was not aware of what was going on around the house these days, that thought is gone. That moment, with its mix of sadness, astonishment, pride and joy will be one that I hang on to for a long time. It makes me happy that my little girl has such a sensitive intuition, and yet sad that she is having to feel all these different, and sometimes heavy emotions in our home. It inspires me in a big way too. It inspires me to overcome the little bumps that we face each week. I see my wife’s strength and love in her, and this gives me strength. So thank you Sadie. You make your Daddy stronger, and very proud.

I also wanted to say thank you again to our family and friends: Matt, who flew over from San Francisco, Kristen who flew in from Dallas, Caroline who flew in from Oregon, Dala who flew up from North Carolina, Aunt Vikii who flew in from St. Maarten, and ‘Uelita and Miana who are always filling in the gaps and help to take care of us. We love you guys! You are all so incredible kind and loving… and great caregivers! We miss you already.

The Good, The Bad and The Chemo

I don't know.  I don't know what to write about anymore.  Since our story went "viral" last week I feel a little trapped in my mind.  This blog was where I was processing.  It was already difficult knowing that people I love dearly would be reading my inner most fears, learning more bad news and having to endure my sailor-esque vocabulary but I made a conscious decision to not censor myself and Nathan supported that.  It was also the easiest way to communicate with those people what was going on without having to repeat ourselves a hundred times which in and of itself is exhausting.  But now I feel even more exposed.  Who's reading?  Do they expect something of us?  Screw it.  I can't worry about other people.  I've got bigger fish to fry. There's a lot to say about the last week and this may only be a partial recap of what's been going on.  It's 4 in the morning and I'm not sure when I'll run out of steam.

Nathan and I are deeply, deeply grateful for and in awe of the global outpouring of love, support and inspiration.  I mean literally GLOBAL.  Who could ever have seen this coming?  I guess it's happened before.  Wait, I know it has.  Sometimes people receive a lot of attention for doing nothing other than finding themselves in a seriously shitty situation.  The Chilean miners come to mind.  It's just that you never imagine it's going to be you, or rather, we never imagined it would be us.  None of it.  We never imagined one of us having cancer.  We never imagined both of us having cancer.  We never imagined both of us having cancer at the same time.  We never imagined our family and friends rallying to our side with one goal in mind, a happy ending.  We never imagined that that goal would be shared with people all over the world.  And we never imagined we would feel so blessed for all of it.   That's the thing about shitty situations.  They can give you more blessings than the burden itself.  They can teach you more than you wanted to know.  They can heal you beyond your pain.

Don't get me wrong.  If I had the choice for Nathan and I NOT to have cancer, I would take it.  In a heartbeat, I would take it for Sadie's sake, for our parents and for all those people who love us and worry about us.   We didn't choose our diagnoses,  but we do choose to be in a state of gratitude.  There is too much love and healing coming our way not to feel blessed.    

So I guess I would say that emotionally/spiritually we're in a really good place.  As for our physical states of being, we're still looking for improvement.  Warning: If you're squeamish, skip the rest of this post.  My first week after treatment was truly awful. I was puking and had diarrhea for 6 days straight.  I was afraid to be more than 2 feet from a bathroom at all times.  In between trips to the bathroom, I made sleeping an Olympic sport.  To add insult to injury, I got my period.  Yes, my period.  Even though I was two weeks late (no doubt due to a mild case of stress) and the fact that menstruation should cease during chemo, I got it 3 days after my treatment.  I blame the super moon.  I just wish I had know it was coming because I was experiencing extreme pain in my lower abdomen and lower back and the fear took over.  I cried to Nathan, "It's spreading."  That's the problem with a metastatic diagnosis, well, one of them.   Every pain I feel throws me into a panic.  I worry that the cancer is spreading further.  So in a way, I was relieved there was clear cause for the pain.

On Thursday, I was due for my 2nd chemo and I was feeling much better but my blood work showed that I was extremely potassium deficient.  It should have been a short session because I only received one of the 3 drugs they are giving me, the Abraxane, but then I had to stay for a 2 hour infusion of potassium.  The potassium definitely helped.  Since that treatment, I have only suffered from fatigue, some intermittent abdominal pain and a new normal of diarrhea but overall not too bad. 

On Friday, Nathan had his 4th chemo session.  He got the results of the EKG he had been wearing for 24 hours after his scare the week before and they looked normal.  They performed another EKG just to be sure and again it was normal.  Because he had experienced severe neuropathy from the last round, his doctor decided to reduce the amount of oxaliplatin he would receive and also give that infusion over a longer period of time.  Unfortunately, only one of those things happened.  He got the reduced amount but the infusion was still 2 hours instead of 4 hours long.  A mistake was made.  Overall, it was not a big deal but by the time he got home Friday evening the side effects had already started.  To recap, the side effects he seems to suffer from the worst are: sensitivity to cold, any cold, which includes the air, tingling in his fingers, the sensation of his tongue being swollen and burnt, pain in his salivary glands when he begins eating anything, pain in his tear ducts when crying, fatigue, abdominal pain and constipation.  It's also a pain the ass to have the take home infusion.  Yes, it's definitely a medical advance to be able to provide the take home infusion because it works better that way - something to do with the half-life of the drug - but then you have to be super careful when holding your kid or hugging people, you have to sleep on your back and you can't take a shower.  It's "convenience" seems to cause a whole lot of other inconveniences. 

It's morning now and we both got a decent night sleep though I have been up since 4 am writing this post.  I definitely need to eat some breakfast, though I'm not hungry.  It's crazy.  One side effect I forgot to mention that I am experiencing is a lack of appetite.  I'm not talking about being nauseated and, therefore, not wanting to eat.  That's a whole separate side effect.  I'm talking about a real lack of appetite.  I just don't get hungry anymore.  But don't cry for me Argentina.  Unlike Nathan, I have more than a few pounds to spare.  In fact, if nothing else, I'm hoping I'll be in great shape for a bikini this summer.  And I won't even have to figure out the new points system on Weight Watchers!

A week in review

Encouraged by the former English teacher who said she would have given my last post an A (as well as all the other wonderfully kind comments I received), I am here writing another one. I can’t make any promises about the quality continuing, however. I still wish that it could be Elisa writing again, as I love reading her work. It never fails to put a smile on my face, a tear in my eye or a laugh in my belly. However, she has been having a very rough week since her first treatment and has been too sick to write. She is finally getting a little sleep next to me now.

First, I want to say how overwhelmed we both are by the amazing people that we know and many that we don’t know, who are reaching out to us with such wonderful messages of support. Those messages of inspiration and encouragement really mean a lot to us. Additionally, Elisa and I are just stunned by the fact that our friends and family have started a website to collect donations for a trust fund that has been set up to help offset some of the financial burdens that we are facing. Since neither of can work right now, this is a major stress relief for us. I cannot begin to express how grateful we are and how moved we are by the generosity and love that we are receiving. Thank you all. Thank you so, so much.

Next, let me bring you up to date since the last post. Friday morning didn’t start off well for me and I was a little concerned that I was going to have to head into the hospital on the first day of nice weather in weeks. I was having some rather intense intestinal pain. I was not so much surprised by having pain, since I have had that since early November; more it was the intensity of the pain that took me by surprise. It felt like a hot poker was being dragged around the inside of my gut. I don’t actually know what that feels like, but I am guessing it couldn’t hurt too much more. However, this is not why I knew I was going to have to go to the hospital… this is just why going to the hospital was going to be that much shittier. I was going to have to go to the hospital because I was having irregular heartbeats, or palpitations. Various heart conditions are one of the possible side effects of chemo, so the doctors always want to know if anything strange is going on with your ticker. I actually had first felt them on Wednesday, but there were just a couple, so I paid them no mind. However, Thursday night they were continuous for up to ten minutes and they kept happening all morning. So I called the doctor and was told I had to go directly to the urgent care center. Doctors are so predictable!

So began the day of tests. I was hooked up to an EKG to monitor my heart, which of course, had stage fright and preformed perfectly normally for the first half hour. Eventually they started seeing the spikes. They were not sure what was causing them; all the blood work came back “normal” (for a chemo patient, that is – they would keep you in the hospital if your blood count was as low as mine is for no reason). So I was off to get a CT of my chest to check for a blood clot in my lungs and they threw in an x-ray of my abdomen to see what was causing all of the pain down there.

 Results: my chest was clear (sigh of relief) but I was full of shit. Literally. My whole intestinal tract was like the Holland Tunnel at 8:45am.  So still not knowing what was causing the heart palpitations, I was sent home wearing an EKG recording device that would monitor my heart for 24 hours. There is still no word on what they have found from that information. They said that the beats themselves were not dangerous. My heart was firing a beat too early. "Could be stress related," they said. Not sure what could be causing that! So finally we were back home by 5pm. Elisa, my brother Joel and I were just exhausted  from anther long day in a hospital.

 That night Elisa suggested that we go stay at her good friend’s apartment, who had just gone out of town that morning; we wanted to be able to have a day of quiet and calm and at least be out of our apartment for a change. It is near Central Park, so we thought we might even go for a walk in the park. We planned to drop Sadie off at her mom’s around 9 AM. By 1PM we were out the door and heading to the city. Life never seems to go as planned. The afternoon started off ok, but Elisa started to feel the effects of her chemo from Thursday kick in. I am not sure why, but the worst days seem to start a full day after your treatment. She was feeling nauseous and was having a lot of muscle and intestinal pain plus a headache to top it off. We tried to get her to eat a little dinner and it seemed to help for a couple of minutes…before we discovered that we have only thrown another log on the fire. She got worse as it got later. Around 8pm we took her temperature. She had a low fever. When you are being treated with chemo, a fever of 100.4 means you go to the ER.  So we kept a close watch, taking her temperature every ten minutes. Unfortunately it is rising fast and within a half hour we are up to 100.1. So I put a call into the doctor and wait for the call back. During this time I become convinced that my heart palpitations are stress related as they have kicked into full gear. We get the call back from the doctor and predictably we are told to go to the ER. We start to get or selves prepared to leave. Making some calls to see who might be able to come help out at the hospital as it would not be healthy for me to stay there all night with her. I really start hating my cancer at that moment. By the time we are dress, packed up and ready to walk out the door, Elisa says that she is not feeling quite as hot and maybe we should check her temp one more time before we go. That woman has great instincts! Her fever has dropped some. We decide to hold off leaving and take it again in ten minutes in the hopes that the fever is passing. Jackpot! It keeps dropping in about an hour it is back down to a mild fever. We make the call not to send anther night at the hospital and just keep a close watch on her temperature for the rest of the night.
We called our friends and cousins in the medical field to make sure that this is not foolish and we got the “ok”. If only all the other symptoms that Elisa was having would have passed, too. But they remained and we are now on day six of her feeling terrible. Nothing seems to help with the nausea. Some of the pain meds they prescribed help temporarily with the muscle pain. Sleep is fitful. Nothing seems to help. It makes you feel so powerless, so inept at not to being able to do anything. So I fetch water, help her back and forth from the bathroom, stroke her hair, and hold her when she cries. I am grateful that I am having some better days at the moment and can do all this. At the same time I, we, both know that this is probably not always going to be the case.

It is a little overwhelming to think about us both feeling sick like this at the same time for the next several months. We are so lucky that my brother has been staying with us for the past week and helping with everything.  So lucky that Elisa’s mother is close by and able to come over whenever we need an extra hand. So blessed by everyone who has been making wonderful food. So blessed to have an amazing friend as a neighbor to handle the receiving of the food, holding on to it until she knows it is a good time to bring it over. We are lucky to have our friends and cousins who have been picking up and dropping off our darling Sadie on the days that she has day care. There are so many daily things that have become more difficult to carry out, and this love and support is so immensely helpful and appreciated.

Elisa has her second chemo treatment tomorrow and I have my fourth the following day. We are both a little nervous. This will be our first weekend together having both had chemo.

Port O' Princess

There are some things that you can expect to be a little different about this posting as compared to the past posts: a lack of brilliant wit and creative writing, poor grammar, poor sentence structure, over use of comma's, the possible misuse of verb tense, and if I forget to press spell check, a rash of misspelling. Why this sudden digression? Because it was written by me, Nathan, Elisa's husband. One of the many ways in which Elisa is my better half is her wonderful talent with the written word. So my apologizes in advance. Elisa had been asking me for a while to contribute to the blog, which I emphatically declined. I told her that would be like asking me to go run next to Carl Lewis.  However I felt that I should pick up some of the load on this one, as it was a day about Elisa. Yesterday was a very big day. A very long, physically and mentally exhausting day. Elisa had her medi-port ( Elisa does a beautiful job of describing what this is in an earlier post ) placed in her chest and received her first chemotherapy treatment. Up until today ( and here i can only speak for myself ) Elisa's cancer had a ghost like quality to it. It was all words and reports and slides. There was no pain. No symptoms. There was no way, other than the lump in her breast, that her body was telling her that she was very sick. Not anymore. Yesterday a physical aspect of it was added. Everything became much, much more real. She will now have a physical reminder, 24/7, stitched into her chest. And it is not going away anytime soon. This was difficult for me to see. It was difficult for her mother and father to see. It was even more difficult for Elisa to have done to her. (I really hate that one of the side effects of my chemo is that it hurts to cry. )

So bear with me as I take you through the day.
We were at NYU from 7:20 am until 7:30 pm.
Yesterdays entourage consisted if Elisa, her mother Eileen, her father Al and myself. After checking in we all headed to the radiology waiting area. Around 8 we were taken in to the patient prep room where a nurse went over the procedure that was about to happen and what to expect. The actual procedure for inserting the port is very quick, you are back out to recovery within the hour. So after changing Elisa was led to the OR and the rest of us were relegated to the waiting area. Just about an hour later she was out and in the recovery area where we had to wait until 11 for or scheduled transport ambulette to take us from the NYU hospital to the NYU cancer center where she will be getting all her chemo treatments. During the wait, Elisa was finally allowed to eat a little food. Unfortunately her body was not so keen on that and she became very nauseous. Never fun, but even worse when you are exhausted, just had a foreign object stuck in you and are  hooked up to monitors and an I.V. They were able to give her some meds to help with the nausea and soon she was feeling back to good ol' exhausted and achy.
The transport arrived about 45 min late and we headed over to the next stop.
I would like to take a minute to say how amazingly kind and courteous our ambulette driver was. His good nature cheered us up and we felt a little better by the time we drove the five blocks the the cancer center. Thank you Harold.
First stop was blood work. Then upstairs to have a consult with Elisa's oncologist. We had a ton of new questions that we wanted to ask based on some of our research and Al had a whole list of his own to ask. Dr. Volm took the time to answer everyone with the gentle and clear manner that made us a big fans of his from our first meeting with him. (I am going to try to speed this up, if anybody is even still reading at this point).
Next stop was chemotherapy. We all scarfed down a sandwich while we waited to be called in (thank you again Eileen for going out to get those!). Once we were taken back and given the quick tour of the facilities (very nice if you were wondering) we were led to the room that Elisa was to receive her chemo.  Luckily she got one right next to a big window and sun was pouring in. Elisa was soon napping like a cat in a sunbeam. 10 minutes later they came to start the first of the set of three drugs - Herceptin. Like most drugs, there are usually a long list of side effects that one can have, but most people don't get. Herceptin is no different. Only it is very uncommon to have a reaction. But as you all know by now, my wife is special. So about 2 minutes into the infusion her body start to tremble - a sign of a reaction. Of course nausea comes with it too. Oh, and did I mention that now the local anesthesia from her port placement has worn off? Needless to say this makes for a pretty shitty combination. So Elisa is feeling horrible. I feel horrible watching this. This is really starting to suck. They give her Benadryl for the reaction and Atavin medication. Both make you drowsy. They give her only Tylenol for the pain (let me tell you, having just had one put in a couple of weeks ago, these people are out of their minds when they say that it won't hurt that bad).
But the combination of the three drugs have a great effect and Elisa falls into a deep sleep for the next four hours. Dr. Volm comes up to check on her when he is told about the reaction she has had. The good news is that this could mean that the drug is working right away. The bad news is that there is a slight chance she may have the same reaction during her next treatment as well ( you know how we love our slight chances). Fortunately after the next treatment (which will be next Thursday) there will be no more reactions to the Herceptin.
The next several hours pass by without event thankfully. Elisa even sleeps through all the medicine changes, a nutritionist consult, several nurse visits, port care instructions, and discharge instructions. She wakes up for the last hour and we are finally free to go. Al drives home in an hour and she eats a little and crawls into bed.
So there it is, Elisa has started her chemotherapy treatment. I was about to say that she has started fighting her cancer, but she started doing that from the second that she was told her diagnoses. She has been fighting it with her amazing positive outlook, her courageous sharing of her feelings on this blog, her gracefully acceptance of the weight that has been placed on her shoulders and her wonderful and abundant humor. And there are so many others who have been fighting it with her. With your thoughtful e-mails and letters.  Your prayers and the positive energy you send us. The food you make for us. The rides to and from treatment. The time you spend with us in your hearts and minds and in our home. I am grateful to you all beyond words. I am grateful and proud of my wife beyond measure. We will keep fighting this. Together. This cancer will not beat my wife. Will not beat my family. Will not beat this city of people that has risen up and surrounded us with it's love.