Update - Medical

April 12, 2013:

Medical update: Last week’s chemo was AWESOME!  Seriously.  No, I’m not joking.  No LOLing.  It was week two so I only had one drug.  I had forgotten that Dr. Volm changed my regimen.  Therefore, I only take Abraxane on week two and NO intrathecal drugs.  It felt like a spa day. I’m not even being snarky.

The slightest inconvenience was a quick pit stop at the hospital. I was due for an echocardiogram.  No official word about the results, but that’s good news.  If there were something wrong, they would be all over me by now.  I can honestly say I feel well. 

The best part was a visit with Andrea, one of my best friends from college. She flew up from Tampa to stay and take care of me for three days.  We napped and watched movies together. Miss her already. 

Boo!!

Written April 4, 2013

Boo!!  Didn’t mean to scare any of you who might still be stalking the blogosphere for news about “The Bonds.” Yes, I have been a ghost for most of the last year. I’m not making excuses or giving reasons for the long hiatus.  Plenty of reasons and excuses will surface as we catch up.  Besides, who the fuck cares at this point?  What was that?  Oh, yes.  You heard correctly.  I said it.  FUCK.  Did everyone hear me?  I wanted to get it out of the way immediately.  I have no idea where this blog is going.  I do know that it will be blazed with tears – happy and sad-, salty language, lots of TV and stories about baby girl, Sadie. She is three and a half now but an only child is always the baby.  

So where are we now?  Chemo but now I am dealing with intrathecal infusions through the Ommaya reservoir, which I explained, in the last post, I think? Posting on the blog…always feels like a resolution that I never seem to stick to it.

More about the intrathecal infusions.  They require much more help than my “normal” chemo did.  No more NY Times crossword puzzles or taking the express bus by myself.  Nope, now we’ve called the village forth again.  The actual treatments necessitate assistance from close friends and family. The treatments cause immediate side effects such needing to take a shit and/or vomiting violently.  Hence, intimates only.  Luckily, I have been able to make it to the bathroom every time except the last time when I puked only to discover the next day that I had pulled the muscles in my chest from the heaving.

You happy I’m back yet? You see why I was reluctant to talk turkey.  This turkey has been shot, had it neck chopped off, its feathers plucked, had foreign things shoved up it’s ass, slow roasted, basted and hacked into while doctors, friends and family alike, keep looking for the wishbone. 

Oh, speaking of chemo, time to get ready for my ride in.  It’s a week one so wish me luck.

Sunshine to Surgery

"Above all else, go with a sense of humor. It is needed armor. Joy in one's heart and some laughter on one's lip is a sign that the person down deep has a pretty good grasp of life."

Great amazing vacation in St. Maarten.
Fabulous 40th celebration for Nathan.
Shitty news about my brain.  Six old lesions grew. Now a total of ten.  Some on dura and some inside the brain.  Consistent with leptomeningenial cancer.  We have to attack the cerebral spinal fluid (csf) directly.  Neurosurgeon will implant an Ommaya reservoir in my brain (see link below).  Intrathecal chemo and Herceptin will be administered directly to the brain once a week every week.  Duration undetermined.  Will receive regular chemo same day with regular chemo schedule.
Freaked out, scared, angry, sad, worried and still positive.  Good reason to believe that the Herceptin with be our miracle.  It has proved to be so far.
Completed my pre-surgical testing today, met surgeon and got medical clearance for surgery on Wednesday.  Surgery on Wednesday.  Should be there at least 36 hours assuming counts are good. Thursdays my birthday :)))))!!!!

And here we go again.  More prayers, more good vibes, more everything please.

xo, E

http://www.atlantabrainandspine.com/subject.php?pn=animation-ommaya

Clear as a Bell: Part 2

So the last post was "Clear as Bell", but we were still waiting on the brain.  Dr. Naryana cancelled my brain MRI for this past Monday because I also had an experimental PET MRI the day of the PET scan. It actually takes images of the brain as well.  The images clear enough to make a general assessment of the brain.

On Tuesday Dr. Volm told me that he had spoken with Dr. Narayna and  everything looked stable. What did that mean?  Stable? Volm said I should wait to speak with Narayana directly for a better explanation. Hmm...I was a bit apprehensive about the word "stable." I was hoping for something along the lines of vaporized, decimated, no sign of, no evidence of, no nothing.  However, the news is still really good as far as a brain doctor is concerned.  There are no new lesions and the ones that are there are very small, not growing and showing no activity.  Essentially, they are just hanging out now. C'mon guys, I know a great little spot in East Village where nobody would bother you. Oh, well. The lesions may never disappear but as long as I have no symptoms and there aren't any negative changes with the MRIs, than there is no reason to be worried.  Ok, here is where I release control.  Deep breaths.

As I said earlier, I was nervous before I spoke face to face with Dr. Narayana.  Nathan reminded me that this is our life now.  We are way ahead of the curve.  Very few patients with my diagnosis has progressed so far so quickly.  It is extremely likely I will live a very long life with continued observation and treatment.  I just have to manage my expectations.  He said to have faith that the news IS really, really good.  So, I'm going to break open the champagne on New Year's Eve and have a sip from someone else's flute.  It's going to be a great 2013!

Whatever you celebrate this holiday season, may you be filled with joy, health, hope and prosperity!

"...And to all a good night."

                            Clement Clarke Moore

Clear As A Bell

Okay - so there is so much information to share I'm going for bullet points and not necessarily in chronological order.

1) My PET scans came back clear as a bell yesterday! As my friend Laura would say, "Whomp, whomp!" I do have my Brain MRI coming up on the 17th but you all have my back so I'm not worried.

2) Dr. Volm is so pleased with another clear scan that he is giving me off from my January chemo cycle so I have a chance to enjoy a long vacation.  Luckily, I have family living in St. Maarten and they are flying us down for a warm, Caribbean vacation.  Ahhh.

3) Sadie is THE BEST!!!!  I am totally going to brag about me and her so if you don't want to be grossed out, skip to number 4.

Me: Sadie, why don't we get rid of some of your toys? You have a lot of them and there are children that don't have any.

Sadie: Okay. (As if this is no big deal, she begins tearing through her buckets of stuffed animals and toys.)  How about this, and this, and this, oh and I don't use this anymore, and this?  She continued for a good ten minutes and was giving up some prized possessions.  Finally, there was entire box filled of her toys.

Me: So, why do want to give your toys away now? (A few weeks ago, I had made the same suggestion and received a resounding, NO!)

Sadie: Because you give ALL your stuff away, Mommy.

Me: (lip beginning to quiver and eyes welling up with tears)  Sadie, you just made me the happiest mommy in the whole world.

Sadie: (genuinely surprised) I did? Oh, I am so happy for you, mommy. I love you so much. (Big hug and kiss)

Okay, I know this is complete, gratuitous, self-aggrandizement, but it will be with me for the rest of my life.  I found out my scans were clear and my daughter said the words above to me on the same day.  I'll never be happier than this.  Well, never is a strong word, but I am going to revel in and remember it for quite awhile...especially when she's pushing my buttons!!

4) Nathan's scans were also clear.  He goes back for a colonoscopy in six months and a follow up with the doctor in a year.  They are really confident about his status.

5) Thanksgiving was wonderful.  We spent it with my mom's side of the family.  Haven't done that in ages. Fun, fun, fun!  Loud, loud, loud.  Love, love, love.

6) Sadie's a theater-lover.  My mom has taken her to see two performances, Once Upon A Mattress and Alice in Wonderland at The Heights Players, our community theater.  She and her cousins were taken to see the Rockettes at Radio City for The Christmas Show by their Great Aunt Barbara.  She got to pet the camel after the show and now demonstrates to us the signature Rockette move, "you kick, and then kick, and then kick..." And last, but not least, she saw Angelina Ballerina LIVE with her Grandma Lynda.  Again...loved the dancing.  Wonder where she gets that?

7) She is getting very excited for Christmas.  We bought our tree and are decorating it a little every day. She is utterly creeped out by Santa Claus.  This is totally fine with me.  I rather my daughter NOT want to sit in a strange, old man's lap.  And I think I have escaped Elf on the Shelf for one more year.

8) My cognitive testing confirmed that I am road ready. I am back behind the wheel of our ever so sweet minivan.  Seriously, people, it has some great pickup.  I also found out that I am officially ambidextrous.  However, when I think of doing a left-handed cartwheel or using scissors with my right-hand, it gets very ugly.

9) Nathan turns 40 in January.  Take it from us, it's good to get "old."

10) We continue to be humbly grateful for all your prayers, well wishes and good vibes as we continue this journey.  Have a WONDERFUL, PEACEFUL & HEALTHY Holiday!!!

Stuck becacuse of Sandy

Just wanted to let you all know that Nathan and I are still in Nashville.  We missed the last flight to NY by 12 minutes on Sunday.  On Sunday, they said the earliest we would be getting out would be Wednesday early in the morning.  It seemed like forever but now we have no idea.  We are staying with our dear and generous friends Lisa Quillman Coviello and Dave Coviello.  Sadie is with my  mom.  My mom lives in a high rise; there is no rain damage and they are nice safe.  I have lots to say about reunion and your many responses to my last post.

Everyone in dangerous areas we are thinking of you.  Please stay safe and make smart choices.  No need to do anything but stay home and relax.

Sending love and safety to all,
Elisa & Nathan

Finding Fear

Many of you have been wondering where I've been, AGAIN.  Well, if God said to rest on the seventh day, I blame the whole brain radiation for making me think every day in September was a Sunday.  I must be the holiest woman in the world right now.  I write that and think, "How dare I use scripture in such an irreverent way?"

I write it and I "find my fear." This is how describe Sadie on the playground lately. A year ago we were expecting a hurricane-like event in the city.  Mayor Bloomberg warned the streets would be flooded and mass transit would be a mess for days. So my dear friend, Amanda, invited us to join her and her family to her parents' home in Jersey to weather (bad pun intended) the storm.  In their backyard, they have an old-school jungle gym.  It's made of thick rectangle beams, sturdy as they day they were bought, which had to be over 30 years ago.  It's the real deal because it actually has a see-saw/teeter-tot.  Good luck finding one of those these days.

That weekend Sadie was about two years old.  She climbed up the loose chain ladder with speed and agility.  She walked on a high beam.  She had perfect balance, unbelievable strength and demonstrated "NO FEAR!"  Everyone there was stunned.  Of course, I was like a peacock, walking around a little taller and that's saying something for someone one who is 5'2".  A year later, she has "found her fear."  She still has the strength and agility to climb the chain ladder but she gets nervous at the top where she must take that last step.  She realizes now that if she falls it will hurt.  She is aware of the consequences of her actions.  She treads lightly now or asks for help when I know, and deep inside she knows, she can do it on her own.

At the beginning of this year, I received two correspondences each castigating me for my use of foul language.  One of them was particularly strident while the other had more of a tone for dialogue about my usage of profanity.  At 37, I had never been addressed in such a manner.  I held on to the pain and anger for a long time. It shut me up and essentially shut the blog down.  I was afraid to use my voice (which has always included swear words) lest I offend someone who was praying for me, sending me love, etc.  Finally, through my own prayer and mediation, I found a way to forgive.  I confronted those who had injured me. They were nothing but apologetic and truly sorry for hurting me.  There was peace in my heart. Or so I thought

Within weeks more anger bubbled up, but it wasn't directed at them.  As I searched my soul, I knew in many ways I agreed with them.  Words do matter.  Words have a vibration.  Words have an intention.  Words can harm or heal.  But believe me, my words have never had the intention of injuring anyone, especially not my readers. 

My words, be they profane or not, are the few things I have in my arsenal to fight and free myself from this relentless disease.  C'mon. Give a girl a break.  When someone says, "shut the front door," we all know what that is code for so why not just say the damn phrase.

I am still mulling over this debate in my head.  I have a feeling there are more f-bombs to be dropped and hecks to haggle over.   Remember, this is my place to blow off steam, not just give medical updates. So, I hope you will reserve judgment no matter how it plays out and continue to send me and my family your prayers, meditations and vibes.

Peacefully,
Elisa