Archive for the ‘Daily Struggles’ Category

Home.

Yesterday afternoon, I was released from the transplant ward, room 8. After many, many trips to the car, the team was finally ready to make the 15 minute car ride home. And oh, what a car ride it was. I felt like a dog, smelling the sea for the first time. I had the biggest smile on my face. I was finally going home.

My apartment looks and feels completely different. My wonderful cousins and loved ones lead by my aunt Ruthie turned the apartment into a brand-new home. It’s beautiful and I am excited to soak up all the new-ness.

Coming home is wonderful and amazing. It is also scary and overwhelming. My doctor said something yesterday that is sitting with me. He said that post-transplant, it takes a while for your soul to catch up to what happened to your body. Anxiety and fear are completely normal feelings to experience at this time. I resonate with that deeply. I know I am home, but my normal life is quite far from my reality. I am still bed-bound. I am still weak. I am still taking a bucket of pills a day. I am still the girl in the bubble.

Despite all that, my joy is boundless. I know there is tough journey ahead, but I feel cared for and loved deeply, which makes this all a lot easier.

This morning, I woke up as the sun was rising. It was amazing. Here’s what it looked like from my window.

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I want to thank everyone for their beautiful, packages and emails and videos and all the love from around the globe. This experience was different than my first transplant, because I finally let you all in. I could not have made a better decision.

With love and light and joy and anxiety and everything in between.

HealeyOr

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Weird dreams.

The last week has been a blur for me. There’s been lots of sleeping and puking and dreaming and general malaise. I could barely keep my eyes open yesterday. Oh, did I mention that all my hair fell out at the same time? Yeah. It did. Awesome.

According to my blood tests, I’m doing remarkably well. It is encouraging to hear and I am grateful that I have not had any unexpected complications. But, truth be told, I still feel like crap on a stick. This will change (hopefully) as my counts get better and my body gets stronger.

Along with the discomfort, came a lot of pain and the only way to combat the pain is with pain-killers. I do not like pain-killers. They make me feel weird and out-of-it and like a completely different person. But, in this case, they are necessary. At first, they put me on morphine, but it definitely did not agree with me. I was terribly nauseated and I was constantly falling asleep mid-sentence. I was then switched over to another opiate called Fentanyl. It did the job. I was more aware and less in pain.

I’m happy to share that as of this morning, I’m off painkillers altogether! Hopefully, my brain will get back to its usual self in the coming days.

Yesterday, my first chimerism test was taken. This is a special blood test that will show how my DNA and that of my donors are meshing. I won’t know the results until next week, but I’m still excited that it is in the works.

It’s been a really tough time and although I know it will pass and things will change, because that is the nature of the universe, I still get caught up in the difficulty of it all. I am so thankful for the love pouring in from all over the world. All your videos, emails and packages have done wonders for me at this difficult time. Thank you, thank you, thank you.

love and light from Rambam Hospital

HealeyOr

 

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The best medicine for my newly shorn head. Thanks to you, Morani, I can have Pippi Longstocking hair whenever it pleases me.

Two steps forward, one step back.

Some Purim fun times.

Some Purim fun times.

Two steps forward, one step back….

Wise words from my wise mother.

That’s how I’ve been feeling lately. I’ll have a day where I feel pretty well, then I will feel sick in the night-time. Or the day will be awful and I will have a magnificent sleep. I would like two of these in a row, THANK YOU!

Those days will come and I am feeling safe and well-cared for in this transplant facility. I don’t get along with every single nurse or doctor I’ve been assigned. And I am resigned to that. However, I do feel that my main transplant team is supportive and positive and I can not imagine being anywhere else. It feels like 4 years and a half years of treatment has lead me to this place. I know most of the staff and it sometimes feels as though their visits with me are just as positive for them as they are for me. Reciprocated friendships, new friends, old friends. It’s been a interesting space to call home. But that is what it feels like.

On the real home front, I have been blessed with an amazing group of caregivers, who are cleaning, rearranging and creating a clean, new space replete with lots of light, air and an artist corner. Up until now, all my work has been done on a tiny desk or on my bed. Not the best way to conjure my creativity. This new space will be more appropriate for my work and I am super excited about it.

And that’s all for now.  Writing is tough when your brain is full of anti-nausea meds and pain-killers. Forgive me for any editorial mistakes. I thought that sharing was more important than anything else.

withloveandlight

HealeyOr

Day 3 (or as it’s called around here, Day minus 5)

I’ve been in isolation for 3 days now and I’m getting used to it, slowly but surely.

Although, I have to admit, I had a bit of a temper tantrum this morning. I won’t go into it, but it involved wanting a cup of coffee and not being able to leave the room. You get the picture.

So far, the chemo regimen has been going smoothly. The side effects are not terrible and I am feeling well, more or less.

Yesterday, I met with an Infectious Disease specialist. She was called in, because I mentioned my desire to use medical marijuana to ease the chemo side effects (and make being in isolation a wee bit easier). I have already been given permission to use it in the form of a homemade tincture and the transplant department has offered cannabis oil. However, from my experience, smoking is usually most effective to making me feel better and I can not smoke in here. But, I received a beautiful gift from a family friend, a top-of-the-line vaporizer. When I first arrived, I asked if I could use the vaporizer and I was told that after meeting with the Infectious Disease specialist, I would have an answer.

She said, “Why not? If it works!”

The reason for concern is that dried plant material can carry all sorts of microorganisms and fungus. That can be very alarming for a person with a suppressed immune system. The doctor decided that the plant material in question was not dangerous.

Here I am immediately after she left.

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My two hens (my mother and cousin, Moran) and I are in the process of setting up the room. It is starting to look and feel more homey. The walls are splattered with the faces of my loved ones and the images that keep me centered.

Here’s a taste.

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My room is located directly in front of the nurse’s station. At first, my mother was concerned that it would be too loud, but I actually like the hustle and the bustle. I like being able to open the blinds on my door-window and see humans moving and grooving in the music of their lives. It makes me feel less isolated.

In the room, there is a comfy sofa-like chair in the corner. I like to sit in it and read and write. It’s also healthy to stay out of bed as much as possible. This is what I see when I look out the window from this vantage point.

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Not the best picture, but it does show this one, solitary palm tree facing the sea. I feel quite the resonance with it.

Those are my thoughts for this day.

Sending love and light from my extra special quarantine retreat!

HealeyOr

Here I go.

Every story has a beginning, middle and end. I am hoping that the today is the beginning of the end of this macabre dance with this most cruel of enemies. I am ready physically, mentally and emotionally for this upcoming battle. Let’s do this!

Today, I am going to set up camp in Rambam, an educational medical center in downtown Haifa. I will be staying there from 4-6 weeks and I will receive a stem cell transplant from an unknown donor.

The first 7 days will consist of a reduced intensity chemotherapy protocol. Its purpose is to lower my immune system to zero to allow the donor’s stem cells to do their job and make me new and improved. I will have a genetically-modified immune system. (Did anyone see this week’s Simpsons? I will be like Sideshow Bob!)

After the chemo is finished, I will receive the donor’s cells in the form of an infusion. It will be like getting a pint of blood. It isn’t surgery in any way. It seems that many people have this misconception about stem cell transplants. (I think I did as well before it became my reality.)

And then, we wait. We wait to see my blood counts rise and we wait to make sure I do not have a dangerous reaction to the new cells. We want a reaction, but not too much. It will be like a balancing act.

I don’t know what is in store for me. I am trying to take each day as is. When I think too much about the future, I find an unshakeable anxiety, and honestly, there is no reason for me to submerge myself in all that right now. Thinking too much about the past or the future is energy-draining and affects my ability to appreciate whatever is happening in my present.  

I am preparing all sorts of activities to fill my time in the hospital. Books, art supplies, my computer, chalk-full of seasons of shows I haven’t watched yet. (I still have not seen the third season of Game of Thrones. Perhaps now I’ll get to it.)

Maybe, I will be writing more regular blog posts.

My biggest sadness is leaving my dog, Kali. She is a tremendous source of strength and comfort for me, so not having her around will be difficult. However, it is temporary and we will be back together very, very soon. (I don’t think she will even notice, she’s very promiscuous with her attention.)

And lastly, I’ve been reading a lot lately and was wondering if I could get some book recommendations from my community at large. I love fiction and all of its subgenres. So, what have you read lately that could be enriching for this soon-to-be sedentary soul?

Thank you, my beautiful support system. I don’t know what I would do without you all. I am deeply grateful. 

with love,

HealeyOr

 

P.S.

I have blue hair.

I thought I would share.

It was kind of a personal dare.

And soon, it just won’t be there.

 

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Precious Time

How do people spend their time? How do I want to spend my time?

Some people spend their time caring for others, like doctors, nurses, therapists. Some people invest their resources into educating the masses. Others spend their time accumulating wealth or knowledge. There are also those that create, in all of art’s many forms. And then there are those who turn in circles trying to figure out what is good for them.

Lately, while watching a TV show or a movie, I think to myself, “Is this something I would enjoy doing?” I analyze all the factors that go into making said production. Is there any role I would enjoy playing? Actor – No, I don’t think so. Line memorization sounds tedious and I am not so good with performing on demand. Director – Probably not. There is just too much pressure to create something that is my vision, as well as, the studio’s. General production work – Talk about long hours and hard labor!

What about being a doctor? I’ve spent many hours in the hospital and during that time, I’ve watched different doctors in varying roles.  And no, I don’t think being a doctor is how I would want to spend my time.

Nurse? Maybe in another life. These people are angels, sent in to aid when necessary in their patients’ silent battle with disease. That’s the hematology department in my hospital, at least. It takes a strong personality and a whole lot of guts to deal with daily.

I’ve thought about spending my time as a musician, but the idea of performing in front of crowds of people sounds exhausting. And that’s only after you make it. Fame is not something I desire. It is one serious double-edged sword.  I think it brings out the worst in people. It can make them believe that they are better than others, when in fact, we are all the same. We are all born, we all die and in the middle, we poop and fart. All the same!

Then I get to thinking about how I spend my time and whether I am satisfied or not. Other than feeling weak and nauseated from the cancer treatments, I spend most of my time doing the things I love: reading, writing, drawing, cooking, baking, sharing with loved ones. I’m even taking a couple online literature courses.

Here are some yummy treats I made in the past couple days.

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Little rose-shaped clementine cakes a la Nigella Lawson and Walter Mitty

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This one came out of my own imagination. Strawberry “soup” with a touch of cream and almond/coconut crunch on top. It came out scrumptious.

For a long time, I had this belief that my life stopped when I got sick. Everything I wanted to do could not be done because I could not plan or study or travel or anything. But, this belief set is incorrect. Although I have been “stuck” in one place, going through some shitty shitty shit, I am still moving forward and still engaging in the worlds that inspire me.

One of the worlds that has shown me light and understanding repeatedly is the world of visual art. I’ve struggled with it for many years, due to internal and external voices trying to present a reality that was just not true. For the first time in my life (last fall) , I went to a proper art class, with a teacher and other students. And it was terrifying. But, it helped me find what I love to do (and what I don’t love to do.) I feel that every day that passes, I learn more about my strengths and weaknesses and how to move forward from them with grace.

I draw because it brings me peace. It expresses the brightest, happiest sides of myself. Even when I’m feeling down, focusing on artwork usually brings me around to clearer space, reminds of my truth.

To sum it all up, I am not a sick person who likes to draw. I am an artist, who happens to be going through some medical issues.

It’s a slight change in perspective, but it makes all the difference.

And with that, I say, Adieu.

May we all find that which brings us satisfaction.

Digestion

Writing is a sign of getting better. Writing makes me feel creative and alive. When I’m not writing or creating something, it means something is wrong.

Cancer sucks my will to live, whether it’s my body, mind or soul. It is an insidious enemy. Quietly and selfishly, taking what I love most about myself and my life. Sneaking around, shoving everything it can into its gaping void and growing and growing.

When people say, “your cancer” or “my cancer”, I cringe. I take no ownership of this monster, although it is made of my cells. Once upon a time, I would ask myself, “what did I do to deserve this?” or “I deserve this, because…” Today, I understand that I didn’t do anything wrong and I don’t deserve this. It just happens sometimes.

Sometimes, life just isn’t fair. And I’ve understood and digested that.

And with that knowledge, it is easier to let go of all that weight I was carrying on my shoulders. Sometimes, I just feel like shit. And it may be because of the cancer or treatments or whatever. And that is also ok. During those times, I don’t want to see people or go places. I just want to be alone.

But then there are the times when I wake up in the morning and I think to myself, “It would be lovely to have a cup of coffee right now.” Those are the days I crave. Those are the days that I feel like myself again. If my stomach can handle coffee, I can handle anything!

Since July, I have been in a dark place, fighting for my life and almost losing. I am now getting back to myself. Laughing, eating, creating, enjoying. I love to feel well. I know it sounds obvious, but when you feel crappy most of the time, feeling well is such a gift.

We all have our problems. Some struggle with physical illness, others with mental illness. There are people that seem like they have the perfect life from the outside, but who knows what they are going through? Our human minds can only comprehend what we are perceiving and experiencing. But there is the big picture. Life is an intricately woven tapestry that moves in ways we will never understand. Unless we become enlightened. But what does that even mean?

In October, I was hospitalized for 5 days. When I arrived at the hospital, I was not well at all. I was severely dehydrated with renal failure and hypokalemia (low potassium levels). During that time, I had all sorts of enlightening visions. In those moments, it was all clear. I can’t explain what I saw or how I understood it. I just remember coming out of the experience knowing that there is a big picture that I will never truly understand. I just have to remember to fight as much and as long as I can. There may even be a reason for all of this.

Several of my cancer-fighting warrior friends passed on this year. People that were such inspirations. Strong people, creative people. And it was heart-breaking. Leaving questions like, “If they couldn’t make it, how can I?”

But then, the idea of the big picture pops back in my head.

And this is the advice I give to myself (and others struggling with this or any other illness).

“Keep fighting, sister. Keep fighting as long as you can. Life isn’t simple, but all will be well if you keep focusing on the goal.”

In my case, the goal is getting cured and leading a “normal” life.

Amen.

 

IDL TIFF file

Speaking of the big picture. There something so beautiful about this nebula. It looks like an eye. Macro, micro. Amazing.