But the winter proves to be a new beginning, a turning point.

On December 22nd, I started my first SGN-35 treatment. (Thanks to all my amazing friends, family and community!) It took place in the chemo ward of Rambam Hospital in Haifa. From the outside, it seemed like a typical chemotherapy treatment. I received the usual battery of tests, blood tests, blood pressure and the usual protocol, meeting with the doctor, waiting around.

But the actual treatment was very different. Before the actual infusion, I was given antihistamines and other medications to aid against allergic reactions. This cocktail made me drowsy. The SGN-35 infusion lasted half an hour and we were done.

The best part of it was that it wasn’t traumatic. When I think back to my past chemo treatments, I always felt awful, at the beginning, middle and end. It was always hours upon hours of being connected to bags upon bags of poison/medicine. Every time a new bag of chemo was connected to my IV, I would taste it and it wasn’t pleasant. It was a constant lesson in patience.

SGN-35 has no taste! It is my favorite part!

It was pleasantly uneventful.

Yesterday, I met with my doctor for a routine check-up. He checked my blood work and noticed something very encouraging. In my previous blood test, I had elevated enzymes that indicates liver involvement. Apparently, these enzymes are now at an almost normal, healthy level. My doctor believes that my body is responding to the SGN.

Yes!

I’m so happy to be sharing this news. Things are looking up.

AND my dear dear friends are throwing a benefit concert to help raise the money for my continuing treatment with SGN. The concert will be in New York City on January 20th. There will be amazing music and lots of great people. There will also be a silent auction with some fantastic items, including some artwork from yours truly. Here’s the link.

https://www.facebook.com/events/294280253951313/

Have a beautiful day…

Love and light…

I’ve been waiting for the past three months to start treatment for this annoying, lecherous illness. I’ve been keeping myself busy with crafty things, new ideas, happy thoughts, but the majority of the time, I’ve been stewing about how I don’t want to be here…doing this….now. I have so many beautiful dreams and all this waiting just pulls me out of the leaps and bounds ahead of me.

Yesterday, I received a present. My miracle drug arrived during Hanukkah. What a beautiful synchronicity. You must be wondering how we did it. Truth is, my parents are amazing. They have been working very hard to bypass all the bureaucracy and all the insanity to get the drug into the country. We are still fighting the insurance company. They should be covering my medical treatments. And in the end, they will.

In the meantime, we were able to get half the amount together and send for the first 3 months of treatment. And that box of something-more-expensive-than-diamonds arrived yesterday.

I got my first infusion of these magical cells. And it was a long day at the hospital. But I’m feeling optimistic and pretty well. Even though, I am more exhausted than usual. It is to be expected.

So, now there’s more waiting. But that’s ok. I’m feeling happier today than I have in a while. There was nothing traumatic about the treatment. It was so different than chemo. I won’t go into the details, but I do hope that cancer treatment starts to move quickly in this direction. Chemotherapy is much more damaging than it is helpful. Yes, it can prolong life, but I believe that cancer can be healed. And that doesn’t happen by systemically poisoning the body.

By the way, my mother took lots of pictures yesterday. I’ll post a few later on.

In chronological order, Happy Hanukkah, Merry Christmas, Happy Kwanzaa and the all inclusive, Happy Holidays!!

Thank you EVERYONE for all this love and support. Thank you thank you thank you.

love,

HEALey

The first time I saw you I was 13 years old. We turned off of Lake Marie Road and everyone in the bus started to sing. It was strange. Where was I?

You see,  I decided to take part in Mosh ‘93 for a few simple reasons.  My cousin Moran was going to be there and for some reason,  it really bothered my parents.

The summer started and I had no idea where I was and why I was there. It took a while to adjust. But then…I was home.

Mosh was the place where I went hiking for the first time. Where I kissed a boy for the first time. Where I learned about cuddle puddles. Where I heard the words Social Justice and Human Rights for the first time. Where I saw the meaning of community. Where I found out that people can live outside the system and be perfectly fine. Mosh brought out the free thinker in me. The person with a moral compass.

We had our hard times. Sometimes, I felt stressed because I didn’t feel the sense of community we often discussed. Sometimes, I felt like I couldn’t be that role model that was expected of me. I came of age at Mosh and sometimes, that’s not a pretty picture.

But no matter what, Mosh always seems to be there for me. Even when I turned my back on Mosh for 5 years, I was still accepted with open arms. My voice was still heard and respected.

The people I know from Mosh are not just friends, they are family. When I think of visiting old friends, I don’t think of people from high school or college, I think of camp friends. Our relationships have evolved over the years, but the foundation of support and love keeps it relevant.

Now, 18 years later, Mosh is still there for me. I am so touched and amazed by all the love and support and rallying that’s been done for me. I know you love me, but I guess I didn’t realize how much.

Thank you. Thank you to all the members of Hashomer Hatzair, past and present. Thank you to the ones who know me and the ones who do not. Thank you for showing me what love without boundaries means. Thank you for holding my hand in these trying times.

We can do whatever we believe we can do. Thank you for showing me that.

With love and amazement,

Healey

Mosh 1993-2007

The first event that occurred had to do with financing the SGN treatment. (Side note :  I have to say that my parents are the best, most helpful, supportive people a girl can have. I can’t imagine how I would deal with all this insanity without their cool, business-minded heads and loving, nurturing bodies.)

From the beginning of this situation, it has been a difficult, tumultuous road. I don’t understand why the pharmaceutical company, the shipping people, the Israeli government and the Israeli Health Department are all so set on making this as challenging as possible. The red tape runs from here all the way to the moon. It’s insane. And let’s not mention the incredible additional costs of shipping the medication.

After weeks of bartering and fundraising and talking to banks and people and anyone who will listen, we have found a way to get the treatment to Israel, so I can begin. (Yay!) Who knew that you have to be business savvy and an effective haggler to get life-saving medications? I know this world is a crazy place, but this level of insanity is difficult to wrap my head around.

For each moment of dizzying bureaucratic nonsense, there is a beautiful person standing there helping me along the way. And I am so deeply grateful. I am not alone. (We are never alone.)

The second event of questionable sanity has to do with Israeli Social Services (called Bituach Leumi). Back when I was first diagnosed and starting treatment, I was assigned a social worker named Areej. She immediately became absorbed into our family unit and I see her more like a cousin than as my social worker. At first, my family and me were confused about what was happening and we didn’t know how to navigate the system. Areej was helpful and she made us aware of my entitled rights from Social Services as someone coping with a difficult illness. In Israel, the person is considered disabled and given a small, monthly stipend to help with expenses, considering the difficulty of working during treatment. In my case, I was given 100% disability by my oncologist.

Every year, there is a committee meeting at Social Services, where they re-evaluate each patient. Every year, I go in there and I’m honest about my current disposition. If I’m feeling bad, I say it. If I’m feeling well, I say it. I think cancer is enough to deal with, without me having to lie about feeling unwell.

This year, after my committee meeting, they decided I’m not sick enough. We received a registered letter stating that all my rights have been revoked, because I seem fine.

To get these rights from Social Services, you have to get a letter from your doctor and social worker. It’s not like a private person can go in and decide they want rights for being ill. 

Strange. Very strange.

Of course, this will be remedied, but WTF?

And finally, the last weird event that happened this week. Yesterday, I received an email from a friend asking if everything was alright, because my blog (this very one) was deactivated due to a violation of the terms of agreement. I had to see for myself and it was true. WHAT?? How does that even happen? I understand that WordPress would be upset if I was doing illegal activity through my blog, but all I do hear is write whatever comes into my head and out of my fingers. I didn’t realize I was so offensive.

I wrote them immediately and they said it was a mistake and my account was reactivated.

So far, two out of three strange events were solved. Just one more to go.

But it sure was strange. And somehow, I’m happy that they all happened together, because it made me laugh. You can’t really be upset when it all happens at the same time. I felt like I had to let go. And smile. The universe is a strange, complicated mistress.

On a lighter, sunnier note, I went down to Kibbutz Lotanthis week. I lived there for a while as younger, more naïve version of myself. I love going down there and soaking up the sun and quiet. The desert is a magical place with very strong healing energy.

I love seeing my dear friends who have known me as I went through all the stages of adolescence. It’s home and a chosen family. My mother joined me for the trip. It was the first time she had ever been and we had a great time.

Kali was also part of the festivities. And she had a fantastic time. Here’s the proof.

This is evidence of her getting the best gift of all. Snuggling in our bed.

And here is Kali’s impression of the Sphinx. Notice both of her positions. No wonder French Bulldogs are called Frog Dogs.

It was a relaxing and nourishing couple of days. I’m feeling better and more optimistic. Wishing everyone a similar feeling of gratitude and nourishment.

love,

Healey

My first week was successful. I did all the expected activities and I reached the amount of points I aimed for. Now, all I have to do is give myself a reward. I haven’t decided what I want yet.

The project is great because it keeps me busy with things that are important to me. I feel like I have purpose and I’m “getting somewhere”. Who knows, maybe by the end of this month, I will be speaking simple Spanish and drawing plants flawlessly.

On the medical front, we are still waiting around for a start date for treatment. I am tired of of this waiting. I wish I could just start it already. But patience is a virtue and it will begin in due time. All the wheels are in motion.

Thank you, friends, families and anonymous ones for supporting me with your generous donations. I am uplifted. (I feel like a broken record…but it’s true! I can’t stop saying it!)

Love and light..

I’ve been living in Israel for the past 7 years and yesterday was the first time I celebrated Thanksgiving. For some reason, I had a strong desire to taste turkey and mashed potatoes this year. And I did and it was … yum.

It was a modest showing. Just my parents and me were in attendance. And of course,  two very wide-eyed dogs staring up at us from the floor.

The food was comforting and delicious. We decided to make turkey legs, mashed potatoes, green beans, salad and two sauces for the turkey. One was gravy and the other was a pomegranate sauce (The Israeli equivalent to cranberry sauce).

I was grateful to sit at the table with my two best friends and enjoy a meal from my childhood. Actually, that’s not true. Our Thanksgiving meals used to consist of Middle-Eastern classics, like stewed lamb and rice. I always craved the turkey and the mashed potatoes. Oh, assimilation.

On a less exciting note, we got news from my health insurance. Despite what’s written in the patient rights manual, they will not be covering the treatment. Now it’s time to regroup and figure out how we are going to get this paid! I have to start treatment soon and this annoying obstacle has been quite jarring.

We are going to hire a lawyer to argue our case to the health insurance. But this seems like a long, difficult road full of red tape. Hopefully, this is just an illusion and because of the nature of my situation, things will get expedited.

Any ideas, friends? Anyone know wealthy philanthropists who feel the need to help a complete stranger?

I have many ideas, I just feel like I need a project manager or something. I’ve never raised money on such a large scale and I don’t know where to start.

At least we are no longer in the dark.

Change of subject. I’m sure you are all wondering how my self-actualization project is going. Tomorrow is the end of the first week of  goal-related activities. I’ve been feeling motivated and on the right track. I’m also tweaking the system, so it is more user-friendly and I don’t have to think too much about it.

That’s all I have to say for now. Thanks for reading. Sending love and light on this chilly, Friday morning.

How can I create a space that will push me forward and help me be productive and creative? I need a system, a routine, guidance.

Victor Frenkel wrote a book called Man’s Search for Meaning. I read the book several years ago and the detail I found most important and most memorable was that no matter what your current situation, (in his experience, spending time in Auschwitz) if you have long- term goals and strive to achieve them, your sanity will emerge intact. Hope will keep your mind strong and your heart full. He called this type of therapy, logotherapy. It focuses on the future, not on the past.

Back in university, I took a psychology class called Sensation and Perception. I don’t remember much about the course except for one project in which I had to state a goal I wanted to achieve and create a reward system that would motivate me to achieve said goal. I think I chose something about losing weight or eating healthy. I don’t remember how it panned out, but it has been a helpful resource for my current endeavor.

Unintentionally, I have already done the necessary research to move forward with my plan of self-actualization.

I did some brainstorming and goal-setting. I made a chart and a reward system and I’m excited to get started. (I started yesterday, but I already feel motivated and inspired). I have 7 different goals and each goal has several activities that will help me achieve it. Each category has a minimum amount of time necessary per week to receive credit. At the end of each week, I’ll tally the amount of points I’ve earned. If I reach the minimum amount, I get a reward. Something small, but significant. At the end of month, if I reached the minimum amount of points, I get a bigger prize.

The first month is a test drive. I don’t know how it will go and whether I will feel like my goals are being achieved or not. If it is a success, I will go on to month two and on.

The name of the project is “A Better Life Challenge”.

I’ll let you know how it goes.

On the health front, I have an appointment with my dear Hematologist today. Hopefully, we will have more information about the treatment. When I can start, etc. We are still in the dark about the health insurance’s ability to foot the bill. Man, bureaucracy is a bitch! But we are all patient and positive.

Wishing y’all a light-filled, productive day.

Other days, all I see is wonder and awe. The sun rises and sets daily and I can’t be more amazed by the our tremendous luck. I see love in all the animals I meet and the people I greet. I feel fulfilled and contented with a kiss and snuggle. Life is simple, yet abundant on these days.

I know both of these experiences are necessary and are an integral part of being human. Without sadness, how do we  understand happiness? And without happiness, how can sadness have such depth?

Comfort is a big part of my disease. Pushing myself outside the bounds of familiarity is where my salvation lies. To allow myself to feel the discomfort that arises, instead of pushing it down. If I’m sad, I can cry. If I am happy, I can laugh. I don’t have to analyze everything I do and think about how it will affect others.  And this stems from a healthy self-esteem. If I have love for myself, there’s no reason to be concerned with others and their ideas of goodness/badness. I make those boundaries for myself. I like myself enough to say, that feels right or wrong or fuzzy or stinky. I no longer need to look to others for approval.

Yes, yes. I know all this. These are not new lessons… just lessons that show up at different times for different reasons.

I went hiking this past weekend. The place was Nahal Amud, a lovely trail next to Mount Meron. It was a difficult hike, full of steep, uphill climbs and and crumbly descents. I was pushed against my discomfort. The voice in my head said, “You cannot do this. Rest. Go back. This is crazy.” Then the other voice…what I believe is my intuition/my higher Self said softly, “You can do this. If you want, you can do anything you want.” Sometimes I listen to the loud voice, the voice of my ego and my comfort. But on Saturday, I listened to my voice of truth. My legs ached, my back hurt…but I pushed myself until I reached the end.

These are the kind of exercises that I would like to do for myself regularly. With everything…hiking, drawing, conversing…pushing myself past the bubble I create for myself. Breaking down my barriers and seeing past my limitations. This practice creates and sustains willpower and self-esteem. Their cultivation brings light and awareness.

I wish I had a picture to share from my hike, but I forgot my camera.

Have a beautiful day. Stay warm!

At the moment, I’m waiting (patiently) for answers, so I can begin my treatment and move forward. Nothing is definite, but it seems as though my health insurance will be able to cover a substantial part of the SGN treatment. I say it tentatively, because it isn’t 100% yet, but I do believe that it will be resolved.

I also got a second opinion on my medical situation and course of treatment. In the past, I had been contemplating changing hematologists. My current doctor and I have some … differences in the way we view the world, humanity and my body. I know that there are doctors out there who are compassionate and considerate. But I don’t believe that’s my doctor. He’s very scientifically-minded. He likes the numbers and the studies. He seems to forget that I’m human and the way he refers to the illness and getting rid of it makes me feel like I’m a broken machine that needs fixing.

I thought that by getting a second opinion with a new doctor, I could possibly find that compassion I’m so craving in my friendly health care professional. And apparently, the man was very friendly (my mother spoke with him)… but he didn’t need to see me. We sent him all my papers, test results and what not and he said that we don’t have to come in, we can talk over the phone.

Um…

Huh…

Does that seem strange to anyone else? I’m not a doctor, but I imagine if I was, I would want to see all my patients, especially ones dealing with hardcore illnesses. Look in their eyes, talk to them, have some empathy for who they are and what they are going through.

So, I guess I didn’t find a new doctor. And even though I may follow his advice, it’s hard for me to take it seriously, because I feel like there’s no connection to the reality of my personhood, except through my exam results.

By the way, his advice was to begin the SGN treatment followed by a bone marrow transplant from a donor. As for what that means and the options in that category, I’ll leave that to another day.

On a happier note, I’m getting a desk today! I’m looking forward to having a workspace. My back has been hurting from my slouchy posture. That’s what happens when you write and draw and create while hunched over and  sitting on a soft mattress.

Things are changing and I’m happy about that.

Here’s a picture from a hike I went on last week. It was taken in a grove of Eucalyptus trees. It was beautiful and so quiet. I love the nature in this country…

It’s called the Venus de Sunshine.