Sadie's graduation

Sadie's graduation from pre-k was one of the most amazing, joyful and painful days since Elisa passed away. It was a beautiful sunny day. A day that is the marker of one of the first steps of achievement in Sadie's educational life- yes I know it isn't college graduation yet  you certainly wouldn't know that from how proud I felt watching her stand and sign songs and get her little diploma! But it was a day that Elisa had fought so hard to see for herself, in this world, one that she talked to me about not wanting to miss and fearing she might. Those were rare moments for her- when she was not 100% certain of her beating cancer, so I know they were the things she would miss most.
Walking into the school that morning I was overwhelmed with memories of our first day visiting the school and our excitement and joy at what a wonderful energy and environment Sadie would be getting to experience. I remembered the first day of school for Sadie there, and Elisa, Sadie and me taking pictures with Aunt Betsy in the beautiful grounds. Sadie and E playing in the little plastic play house together. Beautiful happy memories. I then had to excuse myself and went outside to weep uncontrollably for ten minutes because now those beautiful memories are tied forever with another memory. Luckily this hit me before the ceremony started and I didn't miss any of it.
Losing Elisa is not an experience I would ever have wanted of course, any loss of love is not one that anybody would choose. But to deny the experience by masking, repressing or ignoring the pain and hurt would be to also lose the growth and insight of that experience no matter how painful. Our most painful experinces help form our recognition, appreciation and fulfillment of our most pleasurable , beautiful and rewarding experinces. It is just like how you can sudden really feel what it is to have normal health after a bad cold or the flu- the relief and energy that you have the majority of our days that goes unappreciated. This is how I am trying to frame the crushing sorrow and pain I feel often. To keep this idea in my mind and allow myself to really feel the loss, the depression the fear of having lost the love of my life. I think that  to not experience this would be to also let the beauty of our life that we had shine a little less brightly. The two are linked forever- the having and the having had. I don't believe you can block one out without casting a shadow on the other.
Live, Love
Nathan

Update from Nathan

It has been very difficult for me to sit down and write an update on how Sadie and I have been doing. I have started several times and just like the hundreds of Thank you cards that I have not written the inertia is getting hard to get past. It is still such a raw and painful place to go, but at the same time there is so much joy with Sadie and so much gratitude for all of the amazing outpouring of support and love and sympathy.

I think one of the first things I have to say is thank you. Thank you to everyone that was able to come to see Elisa off and share their love and pain. Thank you to everyone that texted me several times a day to make sure I am eating (I still don’t have much drive to eat but at least it is a habit again). Thank you so much to all of the amazingly generous donations to Sadie Education Fund (the trust for her has been set up and the money is safely secured and ear marked for education only!) Thank you for all of the beautiful cards and emails that I have gotten.

I have so much to be grateful for in this life, and you have all helped me see more of that for several years now.

I guess on to how we are. Mostly I am not sure what to do these days about a lot of things. For one, I am not sure if I should continue to post on the blog. On the one hand it feels sacred to me and that no one should touch it, and on the other I feel as though I have some strange responsibility to keep it up. To continue the openness of this journey that Elisa and I started on and so many people shared with us. I am just unsure what I will do as I am with everything else - except Sadie. I feel as though parts of my organs missing. I mean this figuratively since I am literally walking around without part of my organs from my tumor removal surgery. Nothing feels right in my body, mind or soul. I have no idea if that will ever change. I imagine it won't and just like how having cancer physically and psychologically changes you, you just adjust to a new normal.

The reasons why I am considering continuing with the blog are fairly simple. The first reason is that I feel like Elisa will be coming to correct all my grammar and spelling as soon as I finish writing and part of me hopes that will come true (I will do my best my love). The other and more sane reason is that so many people have written and told Elisa and I, that our being open about our cancer and the trials and love that it brought to us has helped people in some way. So many many people have said this, that no matter how unbelievable it stills seems to me it must be true. And so I suppose then that it might help others if I continue to talk honestly about what this journey, which is continuing, is like. This loss, this gapping wound that has been torn into the heart of so many people that loved Elisa, is part of that journey. Cancer does stop it vicious ravaging of your heart when someone dies from it. In fact it spread to the hearts of hundreds more I think. One of the feelings I have had through all of this, especially towards the end as everything became more painful, more difficult and less likely for a positive outcome, was that I should not to look away. it was so important not to miss any moment of being in life with Elisa and to do this I had to be completely present. For me that means that you have to be willing to hurt right along with and long after the person you love is hurting. Not to deny what was happening, not to allow false hopes or dreams to cloud my eyes so that I could see her completely and be with her completely for every minute that I was blessed to have with her. So perhaps if I can stand it, or if anyone can stand reading it, I may write about what this process is like, for me and Sadie. I don't really know.

I continue to be amazed, as Elisa and I were from the very start, at the incredible compassion, love and generosity of thousands of friends and strangers alike. It is so heartwarming and reassuring to me that when I look at Sadie and think about the world that she is living in and the pain that she will be unfolding for a lifetime, that I know she is so immensely  loved by so many, and cheered on by so many from all around the world. Thank you all so very much for that, for the solace I take in that is quite great. I am also amazed at the strength and emotional insight that Sadie processes. She is able to say when she is upset and sad about mommy. She is able to have real, (short) conversations about her feelings. She has dealt with it with a bravery that she does not even realize she has yet. Another beautiful quality handed down to her from Elisa.

She will stop in the middle of playing with me and ask a question like “Will mommy die again?” or make a statement like “I have dark hair and you have dark hair and when mommy had hair her hair was dark”. And after a short discussion she goes back to happily playing. She is able to process in her own way and at her own pace and for that I am so grateful, and a bit jealous. I often feel like someone else holds the remote to my brain and changes the channel at really inappropriate times. Whereas Sadie clearly is her own broadcasting network.

We spend a lot of time together, we help keep each other strong and feeling safe I think. She certainly keeps me focused on what is important and beautiful in this world, and we still smile and laugh a lot, together.

That is all I can write for now. I hope to be able to be a strong as Elisa was and to keep sharing this journey. Thank you again for all of your love and support and also for your understanding and patience if you are waiting for a Thank you card - they are coming…..soonish.

In Memory of My Light and Love - Elisa

In the hectic past few days (Sadie has been sick with a fever since Wednesday as well), I have forgotten that I needed to update here on the blog. Elisa would have reminded me I know.

It is with profound sorrow that I write these words.

 My light and love Elisa passed away yesterday afternoon. She fought for every moment of life with unparalleled bravery and astonishing grace. I am left with infinite gratitude for having been blessed, as so many were, with having my life forever brightened by her love, laughter, beauty, humor, intelligence and extraordinary strength. Please keep her in your thoughts, in your hearts and in your smiles and laughter for this is where she will live on forever.

We were both always so grateful for the love and support that our friends and family, and thousands of strangers gave so graciously and generously to Sadie and us through this tumultuous period of our lives. I thank you all from the bottom of my heart for helping make it an easier path to travel.

In deep thankfulness, Nathan

I wanted to share with those that loved Elisa the details about the service that will be held for her this Saturday. Please call the Funeral home if you have further questions, the number will be at the end.
A wake will be held for Elisa Bond Saturday March 29th. Chapel hours (for people to come and pay respects ) will be from 2-5 pm. There will be a second service from 7-9 pm where a blessing will be given and Elisa's father, mother and myself will speak. Knowing that Elisa was loved far and wide we have arranged for plenty of space to accommodate as many of her family and friends as possible and will have both chapels 4 and 5 open for her services. A future memorial celebration will be planned where more people will be able to share stories and celebrate her life together.
Location:
Torregrossa & Sons Funeral Home
1305 - 79th Street (on the corner).
Brooklyn, NY 11228
718-232-8844

Medical Update- By Nathan

Elisa has asked me to take over writing the blog in regards to all of the medical information so that if she is feeling up to it she can feel free to just write about her feelings and thoughts and not have to play catch up with scan results, treatment and the like.

So it has been a long time since she has posted, so allow me to catch you up.

Since the last post Elisa had her steroid dosage level increased to try to deal with some of the symptoms she was having. The dose of 4mg daily seemed to have the desired effect and she became more stable on her feet. However long term use of steroids can be unsafe for cancer patients so they decided to have her wean off them slowly as she has done in the past. The plan is that they help her through a patch of bad swelling in the brain then she goes back off once it goes down. If we have learned anything through all this it is that plans rarely go the way you want. As she started to tapper off as she got down to 2mg she would have a resurgence of the balance issues, headaches, fatigue etc. So the docs decided the plan would be to keep her at 4mg until after the “slow study” was done then take her off. Plans.

The slow study is typically a 2-day test. It was very painful and failed during their first attempt so 2 days became 4 days and they had to repeat the test. Luckily the second time around was not as painful and was successful. The shunt and Omaya port were functioning; although the CT scan showed continued swelling in her brain and some possible “hardening” of the ventricles that help regulate the draining of spinal fluid.

So after the slow study Elisa tried once again to wean off of the steroids, unfortunately with the same problematic symptoms returning at 3mg. The decision was made to keep her at 4mg at this point. A new drug was added to her daily regiment to help try and balance out the immunity suppression that the steroids can cause. This takes us to October 9^th when they adjust the shunt draining the fluid in her brain to try and make it a little slower in order to be able to possibly resume intrathecal chemo treatment later. On Oct. 11 during dinner Elisa had a seizure. Luckily I saw it about to happen and Courtney and Eileen were present and fast acting. Sadie was quickly taken from the table by Courtney, Eileen went to get her post seizure meds and I was able to get hold of Elisa and hold her through it. Elisa didn’t hurt herself (didn’t even bite her tongue this time) and Sadie just thought she was getting out of eating her veggies and never knew anything happened. Once she had taken her post seizure meds she was out for the night. That Sunday we were scheduled to go in and have a CT scan to look at what was going on. The scan showed continued systemic swelling in the brain (CT scans do not show tumor growth). After the scan they opened the shunt back up to allow more fluid to drain. Elisa resumed 4mg daily of the steroids and would stay on it until her scheduled MRI of the brain and spine on the Oct 23^rd. During the time leading up to the MRI Elisa continued to have balance issues and headaches even at the 4mg level of steroids. The scan results would then be presented on Friday morning to the tumor board for review and input. On the day of the scan (Wednesday Oct 23^rd) Dr. Jhaveri could see that there was still systemic swelling and the decision was made to increase her steroid level to 8 mg daily.  A bright spot was they could also see that there were no tumors in the spine!  Elisa and I would get a call on Friday afternoon from her regarding the rest of the results and the treatment plan. The news was not great. Although most of the tumors in the brain had not grown, one on the cerebellum had grown. This meant that the Gemcitabine chemo was not effective and she would not receive that drug anymore. This coming Monday she will start another chemo called Vinorelbine though her chest port along with her Herceptin. Dr. Jhaveri also said that because of the continued swelling in the brain intrathecal chemo would no longer be a treatment option. In fact there are not a lot of further treatment options. Dr. Jhaveri continues to search for any clinical trails that Elisa may qualify for but thus far there are none. Elisa will also be staying in the 8mg dose for now. It has taken a couple of days for the steroids to start to be effective, but it has been two days now that Elisa has not had any balance issues, and we are hopeful that this dose level will be effective.

So that brings us to today. Today she felt good, and we hope the same for tomorrow and that is how we are moving forward. I, all of us that know and love Elisa are so grateful for all of the prayers, positive energy and support that you continue to show her. If I may, I would like to impose upon you all to say a little prayer, send a little positive energy, hold her in your thoughts and smile. We are far from done fighting, but do need all the help we can get. Thank you all so much.

Warmly,

Nathan

"Walker" this way...

This is what it's like when you haven't called a really good friend for far too long. You start thinking "well, I can't do it now. I don't have an hour to catch up," so you keep putting off. But each day you procrastinate you know the call is getting longer and longer.  So sorry again for this long hiatus.

My friend Marcos was here two weeks ago and insisted I write something on the blog.  I hope your are happy now mi mejor amigo.

Ok, now to what you've come here to see/read.  For the majority of the summer I have been feeling well but in the last 6 weeks I have had quite a few falls, dizzy spells, weakness in the legs, severe headaches and lack of stamina.   I can't walk by myself anywhere and I only have 1-2 hours of steam in the morning before I need my nap.  The most frustrating part is the of lack of stamina and mobility.  I had to give up public transportation, driving and now it's walking.  I mean, if I didn't have my family and friends I'd be a candidate for meals on wheels.

Speaking of wheels and transportation, a bunch of my friends have suggested get a Jazzy type of vehicle.  Since I can't drive, I don't trust that I wouldn't crash a small vehicle and especially one without   airbags.  A major part of the problem is balance which causes my falls.  A cane has been suggested but it doesn't address the stamina issue, so I have solution.  I need a walker that has a seat in it for when I get tired.  I live in multi-generational neighborhood so they quite ubiquitous.  But I want to be bold, dare I say, avant-garde.  I'm gonna PIMP my walker.  Oh, yeah!  You heard me!! I'll spray paint it, add stickers, a bell and streamers like I had with my first banana bike.  It'll be dope, yo! I'll post pictures.


So back to medical stuff.  I was due for some scans anyway but now there was an additional intention to discover why I was having the aforementioned symptoms that only seemed to worsen.  I had an EEG (to look for seizure activity),  I hadn't passed out during any of my falls and results confirmed that.  I had a Head CT, a Brain MRI and a PET scan.  The head CT looked normal and the PET scan looked great.  There was no sign of disease from my neck down including my spine.  Woohoo!  However, there was edema and progression of the LM lesions in the dura of my brain.  So my new oncologist, Dr. Jhaveri, did I mention that I LOVE HER,  decided on a plan she wants to start next week.  She conferred with many of her neuro-colleagues some who specialize in neuro-breast cancer at a Tumor Board they have on Fridays.  Brain lesions are incredibly small so in the body they would be considered steady and the rate they have grown since January but obviously in the compact space of the brain the ratio is very different.  The consensus by the board was that it wasn't just edema but true progression.  None of them had a clear cut answer on the next steps though.  A case like mine rarely exists so there is no data. Again, I'm patient x, of course.

Dr. Jhaveri also reached out to different research facilities to see if I qualified for any of their current trials.  At this point I do not fit the criteria of any of current ones because of the interventions I have had already but she said she is going to continue looking.

So here's the current plan:
No drugs intrathecally until they do a "slow study."  Essentially a dye will be administered into my ommiya reservoir very, very slowly to see if there are any areas that might have caused the leakage back in April, or are causing any of these new symptoms.  If all is clear, she may start the intrathecal again but with a different agent call thytiopia.   This is at least a few weeks from now.

Wednesday I will receive, through my chest mediport, an all inclusive chemo call Gemcitabine.  It's good for the whole body but it also crosses the brain blood barrier to attack the LM lesions in the brain.

Due to the leg weakness, stamina and balance issues, Jhaveri has prescribed a rather decent dosage of steroids.  I have to be careful though.  The last time I took an even lower dose of steroids, I thought I was Wonder Woman and cleaned all day.  It felt amazing until the next.  I was toast.  It's a totally fake strength.


I am sure that a lot of this sounds bad but in spirit I feel fantastic.  Sadie will be turning 14, uh, I mean, 4 in September.  A funnier, sweeter, bolder, smarter, more stubborn, stronger, person, I have never met. Everyone believes she is what keeps me going and it's true but not for the reasons one might think.  I love her, I like her, I am fascinated by her and I can become insanely frustrated with her.  She constantly challenges me to be a better person.  She is one of my greatest teachers.

Well, that's it for now.  Please pray or mediate or whatever you do for the JOY I feel, not the pain.  The JOY heals.

xo, E

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

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!

Sunshine and Smiles After All!

Turns out, Nathan and I were too busy watching, photographing and videoing our darling daughter on her last day of her first year of nursery school that we forgot to cry.  It was all smiles yesterday!!

Weeping willow

Today I weep.  It's Sadie's last day of her first year of nursery school.  I am sure many other parents find this an emotional milestone but it occurred to me last night that I truly didn't know if I would literally be alive to witness it for myself on her first day of school back in September just a day before her 2nd birthday.

Only a couple of weeks earlier, we had discovered my original brain tumors and the prognosis was dire and quite grim.  I clearly remember having dropped Sadie at school with Maia one morning and falling apart into a hysterical puddle of tears as the teachers had just spoken of the "graduating" class at the end of the year and what their ceremony would be.  Graduating class?  For Sadie that would be three years from now.  I didn't even know if I would I would see my baby finish her FIRST year of nursery school let alone make it through pre-school.  Weeping.

I would say 99% of the time we live most days like there is a tomorrow.  We try not to get ahead of ourselves around here.  Planning our own calendar in advance is always crap shoot but we go for it just the same.  Then life sneaks up on us.  We look a few weeks ahead and a day on the calendar pops-up at us which has already been pre-set and not by us.  In this case, today's event had not planned by us, but by the powers that be...the ever-powerful school calendar.  Today is that day. TODAY!  Today is SPECIAL!  Yes, the tumors in my brain have come back in the last couple of months, but I am still here...TODAY!  TODAY, I get to watch my "big girl" finish her last day of her first year of nursery school.  Now that's a blessing! Thank you all.

I suspect weeping all day!

Side Effects Slide On In

Yes, I've been feeling pretty good expect those first couple days before I got the meds figured out.  Many of you even commented on FB today that I looked fine yesterday when I met with my friend Amy after my last whole brain radiation treatment.  I did.  I was tired, but come on, tired is totally acceptable.

So why look so "good." First rule of having cancer, I try not to look like I have cancer.  There is nothing worse than facing myself in the mirror in the morning, hair all patchy, dark circles under my eyes, no eyebrows...you get the idea.  I might as well say, "Good morning, Elisa.  Remember last night, when you finally went to bed after Klonopin and guided mediation to counter act the steroids?  Yeah, well, HA on you, girl!  You still got it kid. You STILL have cancer.

Today, the EXACT day after my last treatment, I woke up, coughed and then ran to the bathroom to vomit.  Really?  The doctors did warn me of all the short term side effects of radiation which usually set on worse after the treatment because of its cumulative effect, one of which is nausea and vomiting, but just this once I thought I might get lucky.  Just once?  The meds seemed to be working.  Yes, I was jittery but the Klonopin helped to counter that out and I like to nap.  Oh, but, no.  They've been toying with me.  Lurking beneath the surface, waiting to pounce.  I actually believed this might be the one time I would be spared the "usual"side effects.  Yet at the appointed hour, as if a rooster were in on the plan, it emerged at day break.

There was one saving grace.  Sadie had spent the night at my mom's last night. She was Sadie's plus one for the school trip to the zoo today.  I crawled back into bed and Nathan made me a bagel to tamp down the nausea.  So much for my raw food diet today, but this was not the morning to chop kale.

I know this isn't one of my best and brightest posts but I am trying not to put pressure on myself to always be "me" whatever that means.  Today I am just a tired, quiet, mama who needed a lot of rest.

FYI- Upcoming Timeline:

The follow up to this whole brain radiation treatment will be in one month. They will do an MRI and I will meet with the radiation oncologist, Dr. Narayana, the same day.  I so, so love NYU and their efficiency. It really makes a difference.

Tomorrow is day one of regular chemo schedule and I will meet with my oncologist, Dr. Volm.  We will schedule my PET scan and echocardiogram (six month follow-ups) that were pushed back for the rad treatment.

Mid June: Nathan follows up with his oncologist, Dr. Weiser, on the very same day as our 7th year anniversary. How romantic is that? He'll have a follow-up colonoscopy at the end of June.

End of June: I meet with my neurologist, Dr. Vazquez, and hopefully get the all clear to drive again.  I know this sounds absurd people but really focus on this one.  The summer is upon us and I need that freedom to feel like I can enjoy it.  All my EEGs, sleep studies and ambulatory studies have shown NO SIGNS of ANY seizures so it means we finally have the right cocktail for controlling the epilepsy.

As I just said, the summer is upon us and if these two weeks of yuck stay on schedule, then I plan to resume a normal life immediately afterwards.  We have two short out of town trips planned (fingers crossed), but will mostly be staying close to home in order to maintain my chemo regimen.

I know many of you pray, meditate, send good vibes to Nathan, Sadie and me but before I sign off I ask that you add these special people my life to your thoughts as well.  My step-sister, Hayley, is going in for her one year follow-up from her breast cancer.  May all be well with her. My second cousin's mother, Florene, just found out her breast cancer has suddenly and virulently returned after two years.  Her youngest daughter is getting married in September and we all want her to be as happy and healthy for that blessed event. May she spend this summer healing and resting and getting the care she needs. Lastly, my dad, who thankfully does NOT have cancer, will be getting a knee replacement on Friday. He has had a couple of heart attacks and with any surgery there is a risk but he is determined to keep working and being active at 72 years old.  Bless his heart!  Did you get all that?  Phew!! There's a lot of praying, meditating, good vibing that needs to get done these days, people.  Hopefully this is how we heal our world, inside and out.

Peace and love, y'all.

Radiation Wretchedness

When it rains, it pours.  I know Nathan posted yesterday and gave you the fantabulous news about my latest and greatest cancer adventure.  What only a few of you may have heard last night is that as, I, the one and only Elisa Bond, or the 1% for very different reasons than they are protesting around the world, would have it, the wretchedness of radiation hit me hard the very first day...yep, right out of the gate. Surprise, surprise. (Eye roll.) 


Anyway, I feel much better this morning having gone to bed on a cocktail of steroids and Klonopin. And who doesn't deserve some reward after that hell? As anyone in my life can attest, I have probably vomited 20 times in my entire life.  I'm just not a "pucker."  On the other hand, when it comes to or rather goes from my my culi (pronounced koo-lee from the Sp. el culo or It. il culo) the bowl is my frenemy.  I will do absolutely anything not to throw up.  Bulimia could have never been an option for me. 


However, all it is not lost.  With my admittedly, unhealthy weight-obsession, which I blame solely on mass media for air-brushing the likes of Kate Moss, I feel I earned a reward.  My prize?  I dropped a  pound this morning. Granted it was probably only water weight and I am most likely dehydrated and will wind up on IV fluids by the end of the week, but let's celebrate now.  Better yet, let's fantasize.  Let's see...if I have 15 days of treatment plus two weeks of post-crappiness, I could potentially lose up to 25 pounds. Folks,  I could be my 10th grade self. I could give up my Not Your Daughter's Jeans*.  This is the key to getting through the next month and a half.  My strategy - This will be light at the end of the dark, Hobbit-fucking underground, no direction-having burrow that leads me through the Brooklyn Battery Tunnel, spits me out in Red Hook forces me to cross the Gowanus Canal by swimming and walking the rest of way home.


Obviously, I meant to post this last week but I just couldn't get my thoughts clear enough to make sense of them and wanted everyone a chance to digest the newest developments which Nathan so perfectly relayed.  You should all be aware that the drugs are working better and I am not suffering as I thought I would and thank god I have them.


Now a selfish request if you might indulge me.  I do want to respond to all your comments on the blog, on my Facebook page, on the Team Facebook page but I just don't have the energy. But please, please don't stop writing/commenting.  I read them all and my heart swells with love and hope and strength and courage.  Thank you for continuing to care in the many ways that you do.  Deepest gratitude to each of you.

*Every woman should own a pair off Not Your Daughter's Jeans no matter what your size or maternal status - buy a size smaller and you actually look a size smaller.  A true gift of modern fashion.  Oh and the asterisk thing - I am stealing that from Tina Fey's Bossypants  book which has given me the courage to open my big ass mouth again and let the chips fall where they may.  

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.