Who Shot JR?

Who shot J.R.?

I don't think that there has been a cliffhanger like Elisa's last blog post since Dallas was on TV. Sorry about that, but cancer really sucks as a script writing partner.
At the end of the last episode we found Elisa hinting that her prized NED status was about to be done in, and as many of you probably guessed, it was.

We jump to March 5th, to our regularly scheduled Brain MRI, where we receive news that there is a new tumor in her cerebellum. It is small and the only one present so they are not too worried. The past tutors that they zapped with the gamma knife have almost completely disappeared (they take a while to break down) so the doctors are feeling pretty good about being able to treat this one the same way with similar results. They want to wait six weeks and then do another MRI to see if more show up and to see how fast the tumors are growing. So we wait. We grapple with the fact that Elisa is no longer "cancer free", which really she never can be. The reality of this new ever-shifting planet we live on takes a while to get used to. She keeps up with her chemo while we wait, and we try not to worry about the next MRI.

Six weeks go by fast and slow. Sadie keeps us laughing and amazed most of that time. She is talking up a storm, growing like a weed (37.5 inches now), and working on her comedic timing – which is better than mine already.

We find ourselves in the doctor’s office waiting to speak to him about the results, laughing with Elisa's cousin, cracking jokes. This is how we deal with the stress, we laugh. It's the only good part about brain tumors: a lot of good material for jokes.

The results show that there are now 5 tumors. The one from the last scan has not grown much but the other four have. The doctor mentions something about the fact that a few of the new ones are on the outer layer of the brain, which is unusual. He suggests that after we zap these with the gamma knife (to be scheduled for the next week) that we have a lumbar puncture test to check for cancer cells in the spinal fluid. No big deal, no rush. If they find it they can treat it with chemo injections into the brain. Oh, that’s all. We leave and start to think about the gamma knife.

 A couple of days go by and I start to wonder about what that chemo treatment in the brain will be like for Elisa. I do a little research. You can't find treatment information without knowing what is being treated. So I had to find out what they were looking for: leptomeningeal metastases, or LM for short. LM has a lot of symptoms, most of which are the same as the side effects of chemotherapy. This causes them to go unnoticed a lot. It also meant that our neurologist didn’t realize that Elisa had several symptoms that were on LM’s list as well as the placement of the brain tumors. It is a fine line between trying to be an advocate for a patient you are in love with and being a hypochondriac and I was not sure which side I was falling on, but with our track record I decided to call Elisa’s oncologist. Long story short, all the info was put together as well as all the heads of the doctors and they decided to postpone the gamma knife treatment and do the lumbar puncture first. All this takes time to arrange, and there are approvals and blood test to be done ahead of time. It also takes about 5 days to get the results back. That is a lot of nervous, stressful waiting. So what could we do to make it worse? How about have Elisa get a small tear in her Dura during the lumbar puncture that slowly leaks her spinal fluid. This fluid is keeping the brain suspended inside the skull. When the pressure is lowered you get an excruciating headache if you are in any position other than flat on your back. Yep that would make waiting worse. For 5 days Elisa was basically stuck to the mattress. It finally closed up by itself, just in time to go in and meet with the doctors and get the results. A quick side note about the results – this test gives a false negative 55% of the time. So the news that it was negative was welcome, but we were not over joyed. We thought that we would have to do another lumbar puncture, and after what Elisa had just been though, we were less than exuberant about the idea. Lucky the doctors felt that what they didn’t see  -no cancer cells, but also no other abnormalities in the spinal fluid was good enough and they would just do an MRI of the spine and brain to make sure there were no tumors in the spine and then move on scheduling the gamma knife. So now we are up to last week. The scan was Wednesday. Thursday Elisa’s went in for her chemotherapy and we meet with the neurologist to go over the latest scans.

This is where the season would end if this were Hollywood. I wish it would have.

The spine is all clear, but there are even more brain mets. Elisa is up to twelve now and they are spread all throughout the brain. The worst of it is that several of them are the ones they had already treated with the gamma knife, now growing back. The treatment plan changes. Gamma knife isn’t the magic wand (or laser) that we thought it was. We are presented with options. Gamma knife, in two treatments because there are too many to do at one time. However they feel that this will have to keep being done and there is the possibility that because of the placement of the tumors on the outer layer, it could become LM, as that is one of the pathways to the spinal fluid. The other option is whole brain radiation. I don’t think Mike Tyson could have hit us any harder than hearing those words did. We have worried about that from the day we first found out that the cancer had spread to her brain. So why do it? It is the best chance to kill all the cancer cells in the brain in one shot, and hope that this will stop the spread of the cancer. We learn that the long-term side effects are not as bad as we had thought. Yes, in a year or so there can be cognitive function damage. Things like not remembering what you had for breakfast, or a new name or phone number, or not being able to come up with that particular word you want to use in a sentence…. wait, have I had whole brain radiation before? There are the short-term side effects of the treatment as well. Things like headaches, nausea, and fatigue. They will last the duration of the treatment plus a couple of weeks after. After a lot of discussion we feel that it is the right move to go with the whole brain radiation. On Monday Elisa had a mesh mask made of her face so they could start the treatments Tuesday. They will use this mask to keep her head in the correct position each time she goes in.

Normally it takes a week or so before the side effects start to kick in. However Elisa doesn’t do anything half way. Within a few hours of her first treatment she is has a splitting headache and is vomiting, a lot. She never vomits. Her muscles ache. It hurts to chew, she can barley keep the meds that are meant to help with these symptoms down. They take a few days to work anyway. She is miserable. I just hope this means the cancer cells are even more miserable. One day down. One day at a time. 

My apologies for the run on sentences and poor grammar, but my editor is not feeling well.

Starbucks...my salvation?

I haven't been able to write for...what...five months?  Today I came to Starbucks to write a letter of recommendation for my friend who is applying to get into grad school for her MSW.  I was able to get it done rather quickly, in about an hour with minimal distractions.  There were just a couple of phone calls but no Nathan, no Sadie, no cleaning, no TV, no nothin'.

This plan of writing outside my apartment has been percolating in my mind for months.  Amanda told me that this particular Starbucks, the one further from my house, was better to work at.  There's a lot of room,  more tables and a bathroom.  True on all accounts.

January: Nathan's surgery is successful but soon we realize the recuperation is going to be horrendous, much worse than we imagined.  And everyone asks, "So when will he be back to "normal?"  Immediately after surgery, Weiser met with Sharon and me.  He briefed us on how well the surgery went and I asked about the "back to normal" time line as well.  His answer was, "every year it well get better" Um...did he say "EVERY YEAR?"  For some reason I had summer in mind or at least before the fall semester started.  Year? Every year?  My heart sank.  I remember we will never be "normal" again.  Not Nathan, not me. This might have been start of my downward spiral.

The week of the 24th (Nathan's birthday) - Sadie is very, very sick.  By the end of the week, I am sick too but think I chalk it up to allergies.  Yeah, allergies in January.  Who the hell am I kidding?  Some of my Vanderbilt girlfriends are coming into town for my birthday so I guess I really want it to be allergies but I after the weekend I face plant.  On my actual birthday, the 31st, I have a very high fever and have to be rushed to the cancer center.  I am put on IV antibiotics and fluids for four hours.  Volm tells me he is going to "try" to keep me out of the hospital.  Luckily, my fever drops and I am cleared to return home.  I haven't been sleeping because of the hacking cough every night which hasn't let me sleep at all.  I am prescribed a cough suppressant with codeine and my body finally finds the rest it's desperately needed for two weeks.

February:  After having been worn down for the latter part of January, I am starting at less than zero.  Chemo is kicking my ass.  Every weekend I am in bed watching Housewives of Somewhere or Other and I wanna be an American Idiot I mean Idol.  It's the search part of the show so you know what I mean about the idiots.  These pastimes do nothing to elevate my mood but my waistline is ballooning.  My vista springs from an almost constant supine position. My daily apparel changes are from one set of pajamas to another and, yes, clean underwear.  Thankfully, I don't give up on general hygiene.  Bathing and brushing my teeth continue, I even floss.  Shaving my legs isn't exactly a priority but the hair doesn't grow with any urgency and let's face it, there's no need.  Our sick-inflicted celibacy continues.  How long can we go on like this?

We close in on the middle of the month and I am a bona fide basket case.  Valentine's Day.  Everyone is hearts and roses and we are celebrating the anniversary of finding out Nathan has rectal cancer.  Celebrating isn't the right word.  Acknowledging, observing, crying, letting the flood gates open.  My social worker and shrink had warned me that "anniversaries' are often trying times for cancer patients.  I had no idea.  It is also an angry time for me.  With the anniversary, everyone around us is joyful and celebratory saying "wow, isn't it amazing?  A year ago, all this started and now you are both well." WHAT?  And I know what they are referring to and it's all my fault.  It was my naiveté.  I was caught up in an exuberance.  The Today Show.  The "No Evidence of Disease" (N.E.D.) status. Nathan's surgery and a cherry on top.  None of it was or is that simple.  And it definitely isn't The Today Show's fault.  They were only following my lead.  I was doing cartwheels.  This was the news I'd been wanting to hear for almost a year.  I/we heard what we wanted to hear.  We heard what I/we wanted to hear.  We told everyone what they wanted to hear.  We jumped the gun.  The story was and is far from over...

Bueller?? Bueller??

Yes, I know I've been absent for quite some time. In fact, it's been almost three months since I've shared a real post and there are myriad reasons for that.  I thank all of you who have gently nudged me to write again.  This post has nothing of substance.  It's sort of a "soft re-opening." I just wanted everyone to know we are still here and there is much to catch up on.  My goal is to have all the gritty details up by next week.  For those of you who are new to this site, please be advised that this blog is recommended for mature audiences only as it contains indecent language as well as explicit depictions of humanity during crisis.

Shit Happens...Finally

I'm not in the right environment or head space to give a detailed account but here's the poop so to speak!

Nathan went into surgery at 11:10 and was done by 11:40. The longest parts have been the prep and recovery. The procedure went very well and there were NO complications. He is complaining of a lot abdominal pain which to be expected but otherwise he seems well. He is thrilled to be rid of the ileostomy.

If there is anything new to report, I will post again. Thanks to everyone who continues to pray and send good wishes our way. Let's make 2012 a fabulous year!

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?