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

Brain MRI...

All Clear!!  Two teensy - weensy areas they are keeping an eye on but Dr. Naryana is thrilled with the outcome. I will have another scan in 2 months.

By the way, I am about to throw this computer out the window since I can't throw blogspot out. I had just finished a very long post, made sure it was saved and then when I went to preview it had reverted back to 20 minutes prior without all the revisions.  I will try again later.

xoxo,
Elisa

Follow up on Spoiler Alert

This the problem with making promises.  Now I have to write today.  I said I would and there is no excuse not to.  I feel fine. I took a long walk with Sadie and our babysitter to the park, had lunch, took a long nap and now Sadie is back at the park with the sitter.

Her name is Courtney and I often refer to her as our babysitter instead of nanny because I feel that "nanny" has some socio-economic inference that we are upper, upper middle class.  We are not nor have we ever been.  I was raised by a single mom who was a teacher.  She relied solely on her parents if she needed help and they were no spring chickens.  So, we're starting to introduce her as our babysitter or sometimes even "niece" who's just helping out.

So back to our medical conditions.  That's what you want to hear, right?  Let me begin by saying that I often hear that Nathan and I are inspirations or the like to others.  However, I read the comments below before I started this entry and my heart leapt with hope.  Two individuals, "lowens" and "Staci" said that they had had the same stage IV breast cancer (bc) with the same grim diagnoses and now both are NED.  So thank you, thank you to lowens and Stac, whoever you are.

Since I have been such a terrible blogger, returner of phone callers, emails and texts, I am going to really draw the next few posts out. I'll just give a little at time.  To me, summer always has this way of being the longest and shortest season at the same time.  Trying to relax can be extremely stressful, especially when you have kids.

So let's see. Medically speaking...where did we leave off?  Ah, the last thing I revealed was that the original brain tumors had returned and they brought friends.  I believe it was twelve by the time we decided on whole brain radiation.  Besides those first couple of days of vomiting, my body adjusted very well.  Fatigue did set in quite quickly and I spent a lot of time in bed.  I didn't have the concentration to read nor the desire to, so I passively got sucked into The Food Network and HGTV.  I know they're all the rage but I could care less about cupcakes.  However,  I spent innumerable hours watching those folks bake their asses off.  And don't get me started on HGTV.

Sorry about the tangent but those were my life lines to some semblance of the outside world.  Moving right along, I brilliantly think it would be a grand idea to visit my friend Betsy at her parents' lake house in Michigan with another friend Laura two days after my last radiation treatment.  (If I can figure it out, I will add a video clip.)

We had a great three day weekend (as you saw by the video and photos above) but I paid the price.  Immediately upon my return I got sick.  I had a terrible cough, that everyone seemed to have and claimed it lasted a really long time), fever started and I felt cold when it was 85 degrees out and I had a ton of blankets on me.  All this eventually led to almost a week in the hospital.  What a fiasco.  Details to come.

Spoiler #2- in the next chapter my biggest complaint is Nathan and Sadie's trip to Color
ado.  At least, the neuro-ophthamologist was cute!  By the way, any time I see a doctor, his/her title begins with neuro.  I think when my hair grows back, I'll have to find a neuro-hairstylist.

P.S. Thanks to Bets for getting those pictures and the video up.
P.P.S. My cognitive abilities are slightly impaired (not joking).

Weeping, Smiling, Fear, Flood Gates, Breathless...

After the great day we had with Sadie, I crashed because I had actually taken too much Klonopin in the morning so I was toast.  The end of the school ceremony (not her graduation) was outside and the sun was beating down on us so after a light lunch, I slept for several hours.

Nathan and I were in bed.  He watching a movie on his iPad and I reading a book, a real one, not a digital one.  I still have a few left laying around.  But I kept interrupting him with dumb questions like did he feed the dog or did Courtney know the new morning routine since she hadn't slept over in a long time and we had to leave early for my PET scan.  Oh, right.  The PET scan.

The PET scan.  The six month follow-up to see if there was any active cancer in my body, not including brain.  This was supposed to have happened in May but we all know what became a priority that month.  Regardless, I began to breakdown.  Tears, weeping, sobbing again.  Why did it feel so foreign to cry?

My Puerto Rican side of the family cries for everything.  We're expert criers.  We cry when we're happy, sad, overwhelmed, in awe, in fear, overjoyed, mournful, feeling blessed....you get the idea.  We be criers!  But in this last year and a half, I've noticed that I don't really, truly cry.  I do have bouts of tears welling up, especially when someone is showing us a special kindness but alone, in my private space, even with my therapist, I don't go there.  If I do, I seem to "get it together" quickly and even apologize for it.


I wrote the above in early June.  Obviously a lot has happened in the last 8 weeks but I thought I better post something because I was getting a lot of flack from everyone.  I'll write a true update tomorrow.

Spoiler alert- we're all fine!