- Published on
Why, sometimes I've believed as many as six impossible things before breakfast."
Lewis Carroll, Alice in Wonderland
One year ago, I fell down a rabbit hole known as acute myeloid leukemia. As I lay weak, nauseous and miserable in the midst of chemo and radiation treatment for the transplant, I felt I would never be able to do anything useful, productive, or fun ever again. Everything felt impossible. As I wrote last week in the first recovery post, recovery from AML is long, slow, and frustrating.
Part of my recovery has been about keeping myself busy, and taming the demons of Depression, Anger, and Frustration. I've always been a busy and productive person, and the idea of a year "just recovering" wasn't going to cut it. I may not be working and auditioning, but I'm sure as hell going to have something to show for it when I'm back to my Before Cancer Self.
Developed out of necessity to stop myself from going stir-crazy during the initial 100 days post-transplant (the arbitrary and rather useless marker of the commencement of "normalcy"), I created a list of things I wanted to do that weren't aimlessly scrolling through facebook and twitter for hours on end.
I now have six things that I try to do every day that take care of me mentally, physically, and spiritually. Sometimes I don't do all of them. Sometimes I do none. But I know that when I do them, I feel better. Every Thing is something I can do at home, away from the germ-ridden masses, and most Things I can do from the comfort of my couch.
1. morning pages
One of the principle exercises of Julia Cameron's rather amazing artist recovery book, The Artist's Way, is morning pages. First thing every morning, hand-write 3 stream of consciousness pages. You can write anything you want. You can write "I hate writing" for three pages. You can write "I'm bored." You can write "I hate cancer". The possibilities are endless. If you are an artist, if you want to be an artist, if you just want to be a little more creative, this book is a must. Morning pages help keep me sane.
2. meditation
I've been meditating for over five years, and I know that when I practise regularly, it helps take the edge off. Most days I'll do twenty minutes of silent sitting. Other days, particularly when I'm depressed or anxious, I use guided meditations. I particularly love Susan Piver, Petrea King, and music meditations.
3. movement
Getting moving is one of the hardest things for me to do - the pull of couch gravity is strong y'all. The illness and treatment wreaked havoc on my body, and my fitness level has plummeted. Becoming active again is an important part of recovery both physically and mentally. I'm slowly getting back into yoga, learning taichi with Aaron, and through the Ulman Cancer Fund for Young Adults have started running again (more on that next week!).
4. music
Before Cancer, I was in a good routine of practising singing every day. After Cancer, physical fatigue along with thyroid problems means I've lost a whole octave and even basic exercises leave me with a sore throat for several days. For the same reasons, flute practise is also off the cards for a while. The ability to sing and play will return with time and increased strength/energy, but in the meantime, I want to be developing my skills. I've been delving back into music theory, and finally started learning the piano. I have the most wonderful, kind and patient teacher, and the joy I'm getting from playing is immeasurable. It's frustrating in that I want to be brilliant yesterday (story of my life, even without AML), but I am loving it.
5. languages
I speak un poco español, and understand a smidgin of Italian, but I've always wanted to be more fluent in a second language. Duolingo is a wonderful website and app that allows you to learn new languages for free. I'm currently learning Spanish (ancestral duty), French (for when Aaron and I go help my aunt paint her country house in France), and Danish (because Borgen). The site monitors your progress, and rewards you with points for maintaining consecutive days of practise. It appeals to my inner nerd, and need for reward, immensely.
6. writing
Since starting a journal when I was ten years old, writing has always been one of my greatest pleasures. I signed up to a free program through MSK called Visible Ink where patients are assigned a writing mentor. You can be in touch as often or as little as you'd like, and work on whatever writing project you choose. With guidance and encouragement from my wonderful mentor Caren, I've actually managed to finish a first draft of my one woman play "First Lady".
I also did a seven week free online course, How Writers Write Poetry, through Iowa University which re-inspired me to write poetry and even helped me get published in StepAway Magazine!
In addition to the morning pages, I try and work on a bit of writing every day - my play, poetry, blog posts, and of course the movie musical project.
Part of my recovery has been about keeping myself busy, and taming the demons of Depression, Anger, and Frustration. I've always been a busy and productive person, and the idea of a year "just recovering" wasn't going to cut it. I may not be working and auditioning, but I'm sure as hell going to have something to show for it when I'm back to my Before Cancer Self.
Developed out of necessity to stop myself from going stir-crazy during the initial 100 days post-transplant (the arbitrary and rather useless marker of the commencement of "normalcy"), I created a list of things I wanted to do that weren't aimlessly scrolling through facebook and twitter for hours on end.
I now have six things that I try to do every day that take care of me mentally, physically, and spiritually. Sometimes I don't do all of them. Sometimes I do none. But I know that when I do them, I feel better. Every Thing is something I can do at home, away from the germ-ridden masses, and most Things I can do from the comfort of my couch.
1. morning pages
One of the principle exercises of Julia Cameron's rather amazing artist recovery book, The Artist's Way, is morning pages. First thing every morning, hand-write 3 stream of consciousness pages. You can write anything you want. You can write "I hate writing" for three pages. You can write "I'm bored." You can write "I hate cancer". The possibilities are endless. If you are an artist, if you want to be an artist, if you just want to be a little more creative, this book is a must. Morning pages help keep me sane.
2. meditation
I've been meditating for over five years, and I know that when I practise regularly, it helps take the edge off. Most days I'll do twenty minutes of silent sitting. Other days, particularly when I'm depressed or anxious, I use guided meditations. I particularly love Susan Piver, Petrea King, and music meditations.
3. movement
Getting moving is one of the hardest things for me to do - the pull of couch gravity is strong y'all. The illness and treatment wreaked havoc on my body, and my fitness level has plummeted. Becoming active again is an important part of recovery both physically and mentally. I'm slowly getting back into yoga, learning taichi with Aaron, and through the Ulman Cancer Fund for Young Adults have started running again (more on that next week!).
4. music
Before Cancer, I was in a good routine of practising singing every day. After Cancer, physical fatigue along with thyroid problems means I've lost a whole octave and even basic exercises leave me with a sore throat for several days. For the same reasons, flute practise is also off the cards for a while. The ability to sing and play will return with time and increased strength/energy, but in the meantime, I want to be developing my skills. I've been delving back into music theory, and finally started learning the piano. I have the most wonderful, kind and patient teacher, and the joy I'm getting from playing is immeasurable. It's frustrating in that I want to be brilliant yesterday (story of my life, even without AML), but I am loving it.
5. languages
I speak un poco español, and understand a smidgin of Italian, but I've always wanted to be more fluent in a second language. Duolingo is a wonderful website and app that allows you to learn new languages for free. I'm currently learning Spanish (ancestral duty), French (for when Aaron and I go help my aunt paint her country house in France), and Danish (because Borgen). The site monitors your progress, and rewards you with points for maintaining consecutive days of practise. It appeals to my inner nerd, and need for reward, immensely.
6. writing
Since starting a journal when I was ten years old, writing has always been one of my greatest pleasures. I signed up to a free program through MSK called Visible Ink where patients are assigned a writing mentor. You can be in touch as often or as little as you'd like, and work on whatever writing project you choose. With guidance and encouragement from my wonderful mentor Caren, I've actually managed to finish a first draft of my one woman play "First Lady".
I also did a seven week free online course, How Writers Write Poetry, through Iowa University which re-inspired me to write poetry and even helped me get published in StepAway Magazine!
In addition to the morning pages, I try and work on a bit of writing every day - my play, poetry, blog posts, and of course the movie musical project.
So these are my six things that a year ago felt impossible. As I continue on this journey down the rabbit hole that is AML recovery, the impossible becomes imaginable, and even doable.
- Published on
the road is long (el camino 2013)
When I was first diagnosed with acute myeloid leukemia just over a year ago we naively thought that, if all went well, this whole cancer thing would be done and dusted by Christmas. With chemo, radiation, and support from my sister's stem cells, we would go into battle with the leukemia cells, and by Christmas I'd be home celebrating good health and good cheer with my husband. Well, I was home by Christmas. But the war definitely wasn't over.
Recovery from leukemia takes a bloody long time. The past year has been plagued with fatigue, nausea, reflux, hand-foot syndrome, losing all my nails, weight loss, weight gain, mood swings, depression, early onset menopause, chills where I felt like someone was pouring cold water down my chest, and hot flashes where my skin prickled like it was on fire. I've had 8 bone marrow biopsies, an endoscopy, and countless blood tests.
I have discovered that I am not a patient patient. I want to be better yesterday. I want to be back to pre-cancer Lulu IMMEDIATELY. I want to be "normal" again NOW. I don't want to be told nine months after the transplant that my immune function is still low and I can't go back to my old life, work around children, ride the subway on a daily basis, or travel. I don't want to go to counseling and be so exhausted that I can't do anything else for a few days. Nope nope nope. I want full-of-energy, unstoppable, singing and dancing, running, yoga-ing, fit Lulu back please. And did I mention, I. Want. It. Now???
My lack of energy means I can't work full-time. Even if I had the energy, my immune function means it's not safe for me to commute to work every day anyway. I've lost my singing voice - a whole octave was vanquished by the chemo and radiation. I can't run - even a light jog to the end of the block leaves me puffing and exhausted. It is frustrating, and makes me depressed and angry.
With all this in mind, I am incredibly lucky. Three rounds of chemo, full body radiation, and a stem cell transplant later, I am cancer free. I AM on the road to recovery. My energy is slowly coming back. I've started seeing shows again. I have been told by an excellent voice teacher that my singing voice will (eventually) return. I've signed up for a post-cancer program that will (hopefully) get me back up and running.
I'm going to share some of my recovery process here. The road is long, but with your support and a little bit of luck, I'll be 100% back to Me before we know it. And it will feel like all my Christmases have come at once.
Recovery from leukemia takes a bloody long time. The past year has been plagued with fatigue, nausea, reflux, hand-foot syndrome, losing all my nails, weight loss, weight gain, mood swings, depression, early onset menopause, chills where I felt like someone was pouring cold water down my chest, and hot flashes where my skin prickled like it was on fire. I've had 8 bone marrow biopsies, an endoscopy, and countless blood tests.
I have discovered that I am not a patient patient. I want to be better yesterday. I want to be back to pre-cancer Lulu IMMEDIATELY. I want to be "normal" again NOW. I don't want to be told nine months after the transplant that my immune function is still low and I can't go back to my old life, work around children, ride the subway on a daily basis, or travel. I don't want to go to counseling and be so exhausted that I can't do anything else for a few days. Nope nope nope. I want full-of-energy, unstoppable, singing and dancing, running, yoga-ing, fit Lulu back please. And did I mention, I. Want. It. Now???
My lack of energy means I can't work full-time. Even if I had the energy, my immune function means it's not safe for me to commute to work every day anyway. I've lost my singing voice - a whole octave was vanquished by the chemo and radiation. I can't run - even a light jog to the end of the block leaves me puffing and exhausted. It is frustrating, and makes me depressed and angry.
With all this in mind, I am incredibly lucky. Three rounds of chemo, full body radiation, and a stem cell transplant later, I am cancer free. I AM on the road to recovery. My energy is slowly coming back. I've started seeing shows again. I have been told by an excellent voice teacher that my singing voice will (eventually) return. I've signed up for a post-cancer program that will (hopefully) get me back up and running.
I'm going to share some of my recovery process here. The road is long, but with your support and a little bit of luck, I'll be 100% back to Me before we know it. And it will feel like all my Christmases have come at once.