Adventures in Chemoland

Tomorrow is the start of my new treatment. I don’t want this entry to be entirely about that, but it is where I’m starting, so let’s begin.

Tomorrow, I begin the new protocol Gemcitabine and Navelbine. It is considered an “easy” chemotherapy protocol and (even though I think statistics are dumb and unhelpful) 53% of people with refractory Hodgkin’s that receive it go into full remission.  Also, the side effects are not too bad. Most people have slight nausea, constipation and don’t lose their hair. I can deal with those things. I believe it will be just fine.

I’m actually looking forward to starting chemo. (WHAT??) That’s right. About two weeks ago, I came down with a fever and various other not-so-pleasant symptoms, including nausea, fatigue and abdominal pain. After speaking with my doctor, he said to wait a couple days to make sure it isn’t from the cancer, but perhaps something viral. The thing is, I don’t usually get fevers. In fact, the only time I’ve really had fevers that lasted more than a day or so was when I was very sick in Thailand and it was one of the symptoms of Hodgkin’s.

The fever didn’t go away for 2 weeks. It didn’t go above 100 degrees F (38 degrees C), but it still affected me from morning until night. I didn’t want to do anything but lie in bed and watch movies. Oh, and be extremely irritable to everyone. It was all that heat.

From the day the fever started, I began making a mental list of all the alternative/home methods I had learned about lowering body temperature, removing fevers. I also started inputting massive amounts of certain foods that are known to be cooling. I tried breathing techniques, castor oil packs, coconut oil drinks, chicken broth and taking cool baths. I ate the most nutritive foods I could eat, even though I was not hungry at all. I made it a point not to skip a meal.

I also kept myself busy. Even though, I didn’t want to do anything, sitting around all day is not good for my brain. I get stagnant, unhappy. Lucky for me, I was gifted with some freelance work that I had to finish by a certain date which meant, I couldn’t sit around all day.

About two weeks after the fever started, it ended. Perhaps it wasn’t cancer-related. Perhaps it was something else all together. I don’t know. But I do know that it was awful and I would like to avoid that kind of sick feeling as much as I can. Chemo sucks, but at least it is for a purpose. When I feel sick (from what I believe is the cancer) it is so much worse and it also holds a lot of psychological pain and trauma. So, I’ll do all I can to get rid of this darkness or at least to keep it at bay. Yay Chemo!

I also think that the food I was eating and the techniques I used influenced my health for the better. I gave my body all sorts of good stuff to work with and it responded well. Hopefully, it will also make the easy chemo even easier.

In other news, I have been asked by the website Wizpert to become one of their “wizperts”. It is a neat idea. They have experts from many different fields giving advice to whomever needs it. Sounds like a neat idea, so I’m on board.

http://wizpert.com/wizapi/widget?beta_key=3ba42&view=201&ep=2034&size=standard

Happy Spring to everyone!

Love and light.

Not Quite the Miracle Drug

This is not my favorite type of blog post to write. Ugh. I’ve been trying to decide how to say the things I have to say, in the right way, that actually expresses how I’m feeling. But, it doesn’t seem to come naturally. I figure I’ll just write. Free association-like.

I had a meeting with my hematologist yesterday. The SGN treatments didn’t do its job. Ugh.

He told me that he wants me to start a new chemotherapy protocol using the chemicals, Gemcitabine and Navelbine. He is concerned by my latest PET scan. It had mixed results. Some of the disease has completely disappeared, which is great. But there are new hot spots in my spleen.

When I asked why he thinks this chemo will be different than all the other chemo treatments I’ve had in the past, this is what he said.

1) I’ve never been treated with these chemicals. They have only recently been used as treatment for Hodgkin’s and have shown promise for the treatment of Refractory Hodgkin’s. (Me.)

2) This chemo protocol is considered, “easy” and it shouldn’t completely disrupt my life or affect my quality of life. (I guess that’s relative.)

That’s the news.

And how do I feel about it?

I feel many things.

I’m annoyed that the SGN only half worked. Why couldn’t it completely work?

I’m frustrated, because I feel great. I’m strong, active, happy, self-assured. I don’t want to do anymore chemo.

Chemotherapy is like dropping an atomic bomb on a highly-populated region in the hopes of killing one person.

Ugh.

Several months ago, I said that following the SGN-35 treatment, I would go to Peru and continue my work with Juan. This is still something that I feel is necessary for my healing. When I mentioned this to my father, he said, “How do you know it’s going to work?”

I don’t.

How do I know anything is going to work? I’ve gone into every single treatment with the hopes that it’s going to “work” and I’ve realized that the most important thing is that I learn something from it. That I move forward, stronger and more alive. That is part of the reason that I feel like chemotherapy is such a soul-killer. And I can’t imagine how this treatment will be different.

It’s not fair to say. I want to live. That’s my highest priority. If chemotherapy can give me more time, then I will make my decisions accordingly.

As for whether working with Juan will “work”… I know that no matter what, I will be changed after 3 months with him and his family. If anything, I will be doing some very deep soul healing. And that’s a gift that will always be useful.

I have a lot of thinking to do. At the moment, I believe that I will go through 4 rounds of this chemotherapy and do another PET scan. Hopefully, it will put me in remission. Then, I can make my way down to Peru.

I have also changed my lifestyle considerably in the last couple months. I exercise daily, mostly walking and dancing. I’ve also started practicing yoga again.  I changed my diet to one of the most nutritive value. I’ve removed all processed food, refined sugars and carbohydrates. I’ve increased the amount of healthy fats in my diet, most importantly, coconut oil. I eat lots of vegetables and some fruit. It’s been over 2 weeks and I feel great.

Taking things one day at a time is always the best idea. I want to be present and listen to what it is I really need.

Thank you to everyone who has supported me on this rollercoaster ride. Illness is not pleasant, but beautiful things can arise from it.

Like LOVE and GRATITUDE.

Even though, this is sucky. I’m still overjoyed that it’s Spring!

Happy days to all y’all.

And here are a few Spring pics from my beach hike on Saturday.

Kali enjoying the cats on the boardwalk

Israel is so beautiful. It’s a shame people litter.

It’s a record of Bach’s music. Broken. What does it mean?

Probably nothing. I just thought it was random and a bit sad.

Is there anybody out there?

I’m not looking for the key to my heart. That’s not realistic or healthy. Just another compatible heart, so that we can enjoy our hearts together.

It’s been a while since I’ve met someone that struck my fancy. I meet all sorts of amazing, beautiful people, but I haven’t found myself  weak in the knees or even vaguely attracted.

I started making online friends at the age of 13. That’s right. Circa 1993, you could find me perusing the internet using Prodigy and AOL Remember them? I would spend time in different chat rooms, starting conversations, making friends.  Looking back on it, these “friends” were probably pedophiles-in-disguise. Oh well. I turned out fine.

Looking at the internet as a source for romantic opportunity didn’t occur to me until around 2006, when I signed up for that website. You know, the one with all the Jews. I was not successful, so I let it go and decided, maybe it isn’t for me. Over the years, I’ve signed up for a few different sites, but it seems that the men I find interesting don’t write me back and the men that find me interesting are not my type. I also think that different sites cater to different types of people. If your idea for a first date involves getting dressed up fancy and going clubbing, we probably won’t click.

So, where are the nerds?

I found them! They are actually on OkCupid. I’ve made lots of  friends from all over on the site. I would even consider going on dates with some of them, if they didn’t live in the U.S. or England. Oof. I figure if I wait long enough and keep my mind open, a date will eventually materialize.

C’est La Vie.

Touching Story

A friend of mine told me about this amazing woman who is going through a very tough time in her life.

After taking a look at her website, I knew that I had to pass her story on to anyone who will listen. Her story is tragic and moving and despite it all, she still moves forward with a smile.

This is the website. Take a look.

http://alexbtrust.org/

What a beautiful spirit…

Love for Kali

Her favorite seated position

Kali is my dog.

She is black, of medium size and built like a mack truck.

She snores when she’s happy, listening or sleeping.

She farts without thought or self-consciousness.

She is curious about everything, from flowers to cat poo.

She loves long walks, on the beach and in the forest.

She may not understand what I’m saying, but she tries really hard.

She basks in the sun and snuggles in blankets.

She knows how to sit, lay down, shake hands/paws and show her tongue on command.

She loves cucumbers and pine cones.

She sits by me when I cook. I know she is waiting for scraps of food, but I like to believe that  she is learning the craft. (You know, Everyone can cook! – like the rat from Ratatouille.)

Snuggle time

When she is full of energy, she darts around the house like a little torpedo. It’s terrifying and hilarious at the same time.

When I feel ill, she lays in bed with me, right alongside my body. When I move, she looks at me. When I relax, she relaxes.

When I need to vent, she listens to me, even though she has no idea what I’m saying.

If she loves you, she shows it. If she doesn’t, she also shows it.

She is a warrior of snores, grumbles and light.

Soaking up the sun with her pal, Simon.

I do not think of Kali as a human in dog form. I do not desire to dress her up or style her. Her beauty is in her simplicity and her creature-ness.

When people say that they think she is an ugly dog, she doesn’t get offended. I do.

I’ve always loved dogs, but until Kali, I didn’t realize how much.

Every day that I spend with her, I feel lucky.

Before I met her, there was a hole in my heart that I didn’t even know I had.

She filled it without even noticing.

She is a master and she was born that way.

Treatment # 4

I have been feeling private lately. So private, in fact, that I couldn’t bring myself to write a blog entry. Maybe it is because our lives are becoming less and less private (Thank you, Facebook) or maybe it is because I feel that I have this responsibility to keep my loved ones informed about my health situation and sometimes I shy away from that. I don’t like feeling contrived. I don’t like lying. I know that people want to hear that I’m doing well and if I say I’m not feeling great, they say, “That’s understandable, she has cancer.” And that bugs the shit out of me. Of course, it comes from a place of compassion and caring. I’m just working to move beyond that. I can be happy and filled with joy no matter what the situation. 

I am so much more than this disease. I am so more than this body and these treatments. For the last 3 years, it was hard to forget. Every conversation centers on it. I am deeply grateful for all the love and caring. Yet, at the same time, I don’t want to hear it anymore. People tell me all the time that I’m so strong and I’m a hero and it seems so strange to me. I don’t feel different than anyone else. Except for one thing: I have to go to the hospital and take medicine. Oh, and I live with my mom.

A normal life. That’s all I want. Going to work and school. Writing papers, getting paychecks. Going grocery shopping. Going on dates. Paying rent. Whatever.

Life is all about perspective. Every single human being out there has a choice. To live in the path of love or to live in the path of fear. It is easy for me to cry about my situation. Find all the nitty gritty details that are painful and dark and lonely. Being miserable is easy. But how boring is that?

I prefer to look at the positive. The love. The good vibes. The happy moments. I prefer to create them. I’m learning how to take the fears and anxieties (that we all experience) and move through them, instead of stuffing them down, numbing myself. Different activities, different distractions, different people.

Lately, the most effective way for me to experience my feelings and to move through them has been physical exercise. If I wake up feeling sad or angry or hurt, my first impulse is to numb myself. Eat. Watch tv. Shut down. I’m used to that. It’s my defense mechanism.

But physical exercise is magical! I put on my headphones and go for a walk/jog. Or dance like a maniac in my room. Or practice some sweaty yoga (not Bikram, just enough hatha yoga that makes me sweat). And even though the feelings linger when I’m done, I still feel so much better. Like I’m looking at the emotions from the other side of the mountain.

That’s where I am today. I’ve been trying this new “therapy” for the past 3 weeks and I’m feeling happier and less worried about tomorrow or the next day. And today, I have treatment number 4. Nothing much to say about it. As usual, I’m going to bring things to fill my time and my mind.

On a side note, I had a good long month of feeling underwhelmed by creative pursuit. Every time I sat in front of my sketch pad, I feel blocked and almost repulsed. BUT thank you, Sophie, I started listening to the Artist’s Way and things started moving creatively. And I’m feeling the impulse and the joy from the creative process. It is a relief and another form of therapy (if I can ever push past my perfectionist tendencies.)

I’ve also been enjoying the amazing world of the Doctor Who story. How is it that I am just finding this now? I love science fiction and fantasy and the British! And the doctor is such a fantastic character. I’m smitten. It’s been a joyful viewing experience.  

One more thing, before I end this entry. I was interviewed by a journalist last week. She is writing a story about the irresponsible and downright ridiculous way the government has responded to financing my treatment. Not only are we paying more than double what people pay in the States, we are also paying a 17% customs tax. This article is meant to help others in my situation, so this doesn’t continue to happen. Once the article is published (it should be in next weekend’s Maariv – in the Haifa print edition, as well as, online) I will post a link on here. Hopefully, there will be an English version.

Here’s a Rumi quote for the road…

“Be like the sun for grace and mercy. Be like the night to cover others’ faults. Be like running water for generosity. Be like death for rage and anger. Be like the Earth for modesty. Appear as you are. Be as you appear.”
― Rumi

And that’s it for this morning.

Wishing lovely mornings to everyone who took the time to read this…

love and light.

Silver Lining…

It was a difficult autumn for the Gabison family.

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…

The Holiday of Miracles and the Miracle Treatment

I can’t help but see the connection. I’m not going to delve into Hanukkah’s details, but I will say this. The Maccabis survived because of a miracle. Let’s hope it rubs off on the rest of us.

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

 

A Letter to Mosh

Dear Camp Shomria (aka Mosh),

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

Cosmic Interference

It has been a strange couple of weeks. At first, I thought I was just having an unlucky moment of existence. But then, I realized that a) I don’t really believe in luck and b) nor do I believe in coincidences. As for why all the shit started hitting the fan at the same moment, I am still not sure.

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