Vancouver and NYC Memorial Services

Hello all.

I’m still here.

Falling into a quieter routine. A routine! One that I will update you on shortly.

For now though,  just a quick mention of two events that have been scheduled.

First, there will be a service held for Naomi in Vancouver on Sunday, March 30th at 2pm at the Buddhist Temple located at 220 Jackson Avenue (near downtown).

And second, for those in and around New York, there will be a memorial service celebrating Naomi’s life and work on April 11, 2013 from 4-6PM at the Department of Media, Culture and Communication at NYU — 239 Greene Street. 8th floor.

For anyone who cannot attend either, but would like to do something special to honour Naomi’s memory, please consider one (or both) of the following:

1. A fund has been created in Naomi’s name at the Nanny Angel Network — an organization that provides free, professional relief childcare for mothers with cancer. Donate online or call 416.730.0025.

2. Write down or audio/video record a special memory of/story about Naomi and share it with her son, Nate.  This will make for such a precious gift to him in the years to come.  You can send your stories and remembrances to Jamie Berthe (jb2621 [at] nyu.edu), Kari Hensley (kari.hensley [at] gmail.com), and/or directly to me, Naomi’s husband, Mitchell Praw (mitchell.praw [at] gmail.com).

So many thanks.

Mitchell

Posted in Uncategorized | 4 Comments

Funeral Information

Good evening everyone. As promised, the ceremony details:

Tuesday, February 25th.
Ceremony begins at 4PM.
Benjamin’s Park Memorial Chapel
2401 Steeles Avenue West, Toronto.

Those wishing to make a donations in memory of Naomi, The Nanny Angel Network is an organization that provides free, professional relief childcare for mothers with cancer. These Angels provide  support to families throughout treatment, recovery, palliative care and bereavement. Angels. Donations online or call 416.730.0025

Best. Mitchell.

Posted in Uncategorized | 3 Comments

Saturday, 22 February, 2014 – 1:20AM

Dearest loved ones

Naomi passed at 1:20AM this morning.  Surrounded by her mother, sister, brother and husband (me), she slowly and peacefully wound herself down to a final rest.

Earlier this week I was set to post an update on her condition, the details of which are now moot. By way of overview, this past Friday, Valentine’s Day, it looked as though she would pass. Our doctor and nurses were all but certain.  But the day came and went, and Nate’s handing out of Elmo-hearted Valentine’s Day cards to his classmates went undisturbed.

On Monday, Family Day came and went. Family gathered, again brought together by my wife, all while she kept fighting.

Hearts and Family, two things Naomi were sure to stick around for —  two things that she always stood for.

And ultimately, what Naomi tried her hardest to avoid dying for.

Mother. Wife. Daughter. Sister. Aunt. Niece. Cousin. Friend. Doctor. Researcher. Teacher. Student. Hero. Warrior. Light. She did everything to her best and with character and thoughtful generosity.

And now she’s off for a well earned rest, after a courageous battle and a far too short, but otherwise gracious, adventurous and love-filled life.

Funeral planning is in progress. Details to be confirmed after the Sabbath, with services likely held on Tuesday. Stay tuned for confirmations and details.

Hearts

Hearts

Nate Habs

Nate suited up in Red (blanc et bleu) for Valentine’s Day

Us love

Us love

Posted in Uncategorized | Tagged , , , , , | 51 Comments

A husband’s update

Dear friends, my name is Mitchell. I am Naomi’s husband.

Since my wife last posted, things have changed. I’m writing here to update you to her story, to honour her intentions for Everybodyhearts.com, and to extend my personal thanks for the support this community has offered… the impact of which has been felt beyond measure.

Here is some of what’s been going on:

  • The sinus symptoms Naomi described in mid-December eventually gave way to a far more sinister, persistent and escalated pain.
  • Initial MRI results set our minds at ease ruling out new cancer or infection. Let the countdown to Mexico begin!
  • Days after those results were delivered, we found ourselves in the Toronto Western emergency room, Naomi in pain, and we all looking for answers. Mexico a-no-go.
  • Christmas and New Year were spent at the holiday-short-staffed Western.
  • A spinal tap to test fluid and a head surgery to biopsy the brain and lining were part of the exploration/discovery.
  • The first week of 2014 set the stage for a post-sinus infection diagnosis. Cancer. Again. This time racing through the brain’s lining.
  • Naomi moved to the Princess Margaret Hospital (PMH) and began a five-day course of brain radiation during which she suffered a stroke that left her bed-bound.
  • January 9th Naomi checked in to PMH’s Palliative ward.

Throughout this period I  kept family and friends updated via email.

Below is my last update sent on February 7th.  Stay tuned here for further updates.

 

Team,  

We’ve been asked to leave the Princess Margaret Hospital. 

PMH’s palliative ward is a short-term facility. As per floor and hospital policy, once treatment has been received, patients are expected to move on… either to a hospice, a home or to a final resting place. 

At the time of Naomi’s last round of radiation treatment (Jan 6-10) we were told that she was likely to only have days left. The treatment was a medical Hail Mary of sorts intended to buy what would at best be a small window of time. Days turned into weeks. The time we sought to buy was delivered. And now, we’ve overstayed our welcome at the hospital, so we’re out. Moving on up if you will – closer to our home, and to a newer facility.  

The treatment worked. We know this not because of follow up scans or tests. There are no more tests or scans on the horizon. There are no more treatment options for Naomi. And so, putting her through the rigorous process of CTs, MRIs and whatnot is no longer on the table… only her comfort and peace matters now. That said, we do know treatment worked.  For the past four weeks her pain subsided, her moments of lucidity returned, and now, a full month later, Naomi remains with us… unwilling to leave her circle of loved ones on anyone’s schedule but her own. Naomi. 

This past month’s treatment success bought time that so many of us will cherish… an opportunity for goodbyes and moments. A time when friends from the varied walks of Naomi were able to meet, and connect and grieve — through a New Year, a last birthday, a groundhog day — Naomi unlike anyone I’ve ever met brings people together. Even now. 

The most valuable thing this month afforded us was to give our Nate an opportunity to develop his own understanding of this horror. I can’t fully articulate how generous a gift this has been. And while sadness most certainly still lies ahead, my son understands so much now and has been given the foundations to build on that understanding in the weeks, months and years ahead. 

Nate knows his mother is sick. He knows the prognosis is not good. He knows that she has cancer and that cancer is a very different ‘sick’ than what daddy had last week, and what we all sometimes have (specifically as listed by Nate… bubby and babba and eric and zaidy and jeff and jason and pamela and matthew and mutty and jonathan and farji and lauren…) 

Nate will remember the extra time he got to share with mom in hospital, and that he got to say so many more I love yous and goodbyes. As he grows older, he’ll know that he was there for Naomi in her time of greatest need, that he made her cards, gave her unprompted hugs and kisses, and magically made smiles where smiles were otherwise absent and unexpected. Only Nate could have done this.   

One week ago, while visiting Naomi in her hospital room Nate asked for music and kicked off a most epic dance party for Naomi, Naomi’s mom and me. He twirled vigorously. I killed it, obviously. Saeko looked on with grandmotherly approval… and Naomi threw her one able-to-move, fuck-you-cancer arm, way up into the air… and waived (or pulsated it somewhat uncomfortably) like she just didn’t care. This son carries forward his mother’s torch. Only Nate.

Where does this leave us? 

As expected, the effects of the radiation have worn off and the symptoms of the disease are once again on a forward march… likely pissed off at Naomi for having again punched it in its stupid face.   

Effective now, Dr. Naomi Simone Angel is resting in Bridgepoint Hospital’s 4th floor palliative wing. Room 4.121. 

Stay tuned. 

With love. 

Mitchell

Fast friends.

So glad we’ve finally had the chance to meet. 

Damn straight.

Damn straight.

 

Posted in Uncategorized | Tagged , , , , , , , , | 92 Comments

365 days

My horrible sinus infection has largely cleared up, and although I’m a little stuffy and still thoroughly exhausted, the sinus pressure is much better. Unfortuntately, I am having some headaches that are worrisome. I’m trying hard to stay calm about them. And I’m still emotionally all over the place. I’ve heard this is normal when treatment ends, that that is when people often start to process everything, forcing all sorts of emotional and psychological work to slog through.

Yesterday was the one year anniversary of my diagnosis. How does one mark this type of anniversary? We decided on burritos and naps.

It was a hard day after a hard year.

Every night when I put Nate to sleep, we have a bit of a conversation. He tells me a little bit about his day, painting a fragmented picture of his experience at daycare and at home. Sometimes he says things like, “puzzle,” or sings the ABCs, or explains “lion says ‘roar!'” So last night, feeling reflective, I said to him in a gentle voice:

“You know, Nate, this past year has been a tough one, because Mommy has been sick.”

And he looked at me with earnestness and said, “Chanukah is over! It’s finished!”

And I smiled and said, “Yes, sweetie, it is, but we’ll celebrate again next year.” I get the feeling he really enjoyed Chanukah this year. And then he put his hands on his head and said, “Birthday!” And then he said, “cake!”

“Yes, love, it’s almost your birthday. How old are you going to be?”

“Twoooooooooo!”

So that was it, our big reflective conversation marking the one year anniversary of the diagnosis. Me, looking back at some tough times, and Nate looking forward to happy ones.

Enjoying the Canadian winter at a friend's cottage.

Enjoying the Canadian winter at a friend’s cottage. How can you not smile looking at these faces?

 

Posted in Uncategorized | Tagged , , , , , , , , , , , | 14 Comments

Patience

Hello, friends.

After a few weeks of feeling great, I have been hit with a pretty horrible head cold. Yesterday, I woke up with so much pressure in my head that I was worried it was a sign of infection from the brain surgery or the radiation procedures. I had a mild fever as well, so I went to emergency. (After both procedures, my doctors said that I should go to emergency if I had a fever, because it’s a sign of infection.) So, at 5:30am yesterday, I went to emergency. Six hours and several tests later, the doctors confirmed that I had a bad case of a sinus cold, which I guess is good news. So now I’m resting and drinking lots of fluids, blowing my nose and hoping this passes as quickly as possible. Patience. Patience. Patience.

In case you were wondering what a CT scan of a sinus cold looks like.

In case you were wondering what a CT scan of a sinus cold looks like.

Friends, I won’t lie, this sucks. But I suppose it’s also a reminder that people get sick sometimes with things that are not life-threatening, and that’s part of life too. And you just have to suck it up and get through it. My body has been through a lot this past year, and there is a part of me that is in awe of how it’s handling everything. It is worn down, but not broken, and it is doing it’s best to work through this horrible cold.

Take care of yourself, friends. I’ve heard that there is a bad virus is going around.

Posted in Uncategorized | 6 Comments

Halos

Hello everyone,

It’s been one week since radio-surgery, and today is a good day. It was terrifying and horrible, but it’s done! The scariest part was definitely the attaching of the frame (which they call a halo). I cried the whole way through. The doctors offered encouragement, and Mitchell held my hand. I’m not going to go into detail here, but it was the scariest thing I’ve had to do. That part of the day lasted about 15 minutes. Then we had a long wait, and then radiation took about 80 minutes. The radiation part was painless and fine. Then they removed the halo, which was also scary, but quick. They kept me in the hospital for observation for about an hour, and gave me pain medication and steroids (to control the swelling in my head), and then I got to go home.

Today, I am feeling good. I am so happy to have this behind me, and to have the good results from the scans. The extreme fear has dissipated into extreme relief and gratitude (although the fear lingers too). I have two visible, little marks on my forehead from where the pins were put in. They look a little like intense bee stings, but they should heal quickly and hopefully will not leave any traces behind. I am still on a lot of medication, and will continue to be so for about two months or so. And it is likely that I will be on anti-seizure medication for the rest of my life (boo! for daily medication forever, but yay! for decreased risk of seizures!). My face is still swollen and I would love to get a proper haircut. Now, I’m hoping to focus on rest and health – healthy eating, exercise, and time with family and friends. Thank you, everyone, for everything. Today is a good day.

From many Halloweens ago, when a halo was simply part of a costume.

From many Halloweens ago, when a halo was simply part of a costume.

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , | 24 Comments

My Standing Heart

Thank you for all the kind words of encouragement from my last post. I am feeling a bit better. Many of you shared thoughts on harnessing fear and I’m starting to see how fear can be productive. It is the body’s way of readying for a fight, preparing itself for a tough battle. Fear can make you stronger. And I am  starting to feel that I am stronger than fear.

I’ve also been reflecting more on the radiation procedure. As I have written about before, the actual radiation treatment is not too bad. But in the case of the upcoming procedure, it’s the preparatory procedures (pins in my skull and attaching a frame) that have me feeling freaked out. The radiation process itself is less scary. I was thinking about the last time I went through radiation, and the special breathing I had to do throughout the process.

Because I had left sided breast cancer, I had to hold my breath during radiation. The theory is that if you hold your breath, your lungs fill up with air, and they push your heart out of the way of the beams of radiation. I only had to hold my breath for about 30 seconds at a time, several times for each session.  Thirty seconds is not a long time, but it’s surprising the number of thoughts that run through your mind as you lay there, on the metal table and hear the soft ringing of the sound of radiation machines.

And as I took a deep breath in, and held it, this is what I thought: Right now, my heart is standing.  As my lungs pushed my heart out of the way and  kept it from danger, became its big brother, its protector, my heart stood. It stood for my family, my husband, and my little boy.

As I prepare for this next step in treatment, it is standing again, because it is ready for a fight. Now, when I think about fear, I reframe it to think, fear means my heart is standing, readying for a fight. But my heart is also standing, because it is equally ready for an embrace.  I am facing the world, and everything it throws at me, ready for the fight, and ready for the embrace.

And yesterday, we got some good news, some much needed hugs after many, many punches. I had several scans last week to make sure the cancer hadn’t spread anywhere else. We got the results back and I’m happy to share that they found no new cancer. This means no bone cancer, no lung cancer, no liver cancer etc. (No new cancer dance!) And because of this, I do not have to have chemo.

It’s great to be going into the procedure this morning knowing this good news. We’ve decided on the radio-surgery option, and not the whole brain radiation. We know that, at this point, the only tumor we know of is in one spot and so that’s the immediate threat that needs to be treated.

The whole procedure happens once, and takes about half a day. We’re scheduled for an early morning start today (in just a few hours), so it should be done by about mid-day. Looking forward to when this is done, and to more hugs than punches in the future.

More hugs:

Halloween family.

Halloween family.

The future's so bright...

The future’s so bright…

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | 17 Comments

A New Four Letter Word

We are starting to learn more about next steps in treatment. We knew that radiation therapy would likely be next, but we weren’t sure what it would entail. We got some details on Friday and had to make some tough decisions.

We were told that there were two main options in my case: 1) whole brain radiation and 2)targeted radio-surgery to the site of the tumor. Whole brain radiation, as the name suggests, involves radiating the whole brain, so that if there are any stray cancer cells outside of the tumor site, it would treat those too. Unfortunately, there are some major side effects including irreversible cognitive difficulties (short term memory loss, difficulty processing information). With option 2, cognitive difficulties are far less common, and apparently not a major concern. But it only treats the site of the tumor so if there are some stray cancer cells, it won’t get those. It was a hard decision to make, and originally, I was leaning towards whole brain radiation because even though I do not want to suffer from irreversible brain damage, I REALLY don’t ever want to have cancer again. (what a choice to have to make!) But after talking to several doctors about my options, it seemed clear that the tumor I had was very aggressive and it made sense to target it specifically again so it did not come back. Plus, having radio-surgery now does not mean that whole brain radiation is ruled out as a future treatment if necessary (if any new growths appeared in an MRI scan).

Friends, I have done my best to stay positive and strong in the face of insane challenges, and I feel that I’m reaching a sort of threshold. I am close to my limit. The radio-surgery involves  a surgeon sticking pins into my skull and attaching a frame of sorts to my head so that I am unable to move at all during the procedure. They do not use general anaesthetic for this procedure, just local, so I will be lucid during the process. That’s it, I’m at my limit. Someone is going to attach pins to my skull while I am awake. I have felt fear this year many times. But I am feeling it in a very intense way about this procedure. I try to keep it at bay, but it has become a real presence in my life, a new four letter word: fear. There is the fear of pain and side effects, but also the fear that even if I am doing my absolute best to fight this disease, it may not be enough. For the last few days, I’ve been easily overcome with emotion, bursting into tears when I think about this past year and the weeks ahead. I am that woman crying into her food at the restaurant, the one crying as she walks down the street. I’m trying to keep it together, but it’s hard. When I feel overcome with emotion, I try to focus on the present and the goodness of the moment: the wind on my face, the taste of delicious food, the warmth of a loving family. I know it is normal to be afraid and to feel sad, and it’s probably good to have a few good cries.

Thank you, friends, for letting this blog be a space where I can be honest about this experience. I believe that fear is normal, and that it can be harnessed. Just writing about it, and getting it out, helps me to feel stronger. With your help, I will turn fear into another four letter word: hope.

Speaking of hope, check out these photos:

Little dinosaur.

Little dinosaur.

Mommy penguin. Baby dinosaur. (my face still looks a little swollen, and my smile looks a bit off, BUT I am dressed as a penguin!)

Mommy penguin. Baby dinosaur. (my face still looks a little swollen, and my smile looks a bit off, BUT I am dressed as a penguin!)

Nate lovin' life.

Nate lovin’ life.

Me, looking more like myself. Thanks to T'ai!

Me, looking more like myself. Thanks to T’ai!

Posted in Uncategorized | Tagged , , , , , , , , , , | 25 Comments

Sometimes, balloons happen

As you can imagine, the last few weeks have been crazy, and I’ve heard or uttered some of the craziest sentences imaginable. Here are a selected few to give you an idea of what we’ve been dealing with:

On the morning of the surgery, the surgeon said: “There is  a blood vessel wrapped around the tumour, so you have a 20% chance of having a stroke today.” (Seriously?! How do things keep getting worse?!) Another surgeon then told me that, “There has been a lot of swelling in your brain and when we cut into your skull, it will relieve some of that pressure but may also cause your brain to pop right out, causing a serious seizure.” (Stop it! How much bad news can one person handlle on the day of her brain surgery?)

Thankfully, neither of these things happened. The surgeons seem pleased with the results and the recovery continues to go well.

When I was discharged, I asked about the sutures (which look like staples) in my head and when they would be removed, and the doctor said: “Twelve to fourteen days after the surgery you can go to a walk-in-clinic or to your GP and have them removed. In fact, we will give you a little kit and you or Mitchell can even do it yourself. It’s a simple procedure and shouldn’t hurt much.” (I may have just had brain surgery, but I’m not stupid! As if I’m going to attempt to remove a row of staples from my own head!)

Two weeks after the surgery, I find myself saying some crazy sentences too. For example:

(on the phone with my doctor’s office): “I was there two days ago to get the staples removed from my head, and it appears that one was missed. I still have a staple in my head. I would like it removed immediately.” (awkward.)

These! (overshare?)

These! (overshare?)

At the doctor’s office, the doctor said, “Sorry this is going to hurt. Because the staple was left in a little too long, the skin around it has healed more than it should have, so this will be more painful than the ones we moved a couple days ago. (not fair!)

As I’ve mentioned, my appetite has been crazy. On Saturday, I finally uttered the words, “I think I’m full,” and it felt like a momentous occasion.

We also got the pathology report back and learned that this cancer is the same one from earlier this year. So it is a recurrence, not a new cancer. This is the news we expected to hear. I am healing well. Right after the surgery, I had a pretty bad black eye and my face was swollen. It’s much better now.

There have also been some great sentences or phrases too, mostly said by Nate. Here you go:

Nate: “Mommy has an ouchy. Mommy, be careful. No more ouchy.”

Me: “Nate, do you want to sing a song?”

Nate: “Yeah!”

Me: “What song?”

Nate: “Desperado” (I kid you not!)

Then I start singing it, and Nate says, “Daddy sing Desperado. (Diss!)

Over the last year, Mitchell and I have become skilled optimists. I hope this is a skill we are passing on to Nate. Things have been tough for us for a while, and Nate has been amazing about all the changes, big and small, in our home routine. I think he understands that mommy is sick, and that things are different right now. I hope he understands  that even though sometimes things are hard, there are also many pockets of happiness and love too. The other day, I bought him a big bouquet of balloons. I want him to know that even  though some times are tough, and seemingly randomly so, sometimes, balloons happen too, and for no apparent reason.

Cane in one hand, balloons in the other.

Cane in one hand, balloons in the other.

A blue balloon for Nate.

A blue balloon for Nate.

Bonus photos:

Working on an art project with Nate, and feeling punk rock in my studded bandana to cover the sutures.

Working on an art project with Nate, and feeling punk rock in my studded bandana to cover the sutures.

More egg-cracking fun

More egg-cracking fun

Sharing a look with Audrey on a walk around the neighborhood.

Sharing a look with Audrey on a walk around the neighborhood.

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 22 Comments