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.