Today I had my first hospital appointment in six weeks. Since July last year, this is the longest I have gone without being poked, prodded, and analyzed by my medical team. It feels amazing. 

My transplant doctor is a force of nature. She is no-nonsense, utterly formidable, and surrounded by an amazing team (of predominantly women) whom I adore. Not because she is in any way evil, but because of the magnificence she exudes, I always picture my doctor walking down the hospital corridors to the theme song of the Wicked Witch of the West. I have grown incredibly fond of my doctor. If I knew she weren't so busy saving lives, I would ask her over dinner to pick her brains about everything she knows. 

My doctor is happy with my counts and progress. My no-nonsense, utterly formidable, but truly amazing doctor even got a tad shiny eyed when I told her that, for the first time since this whole AML malarkey began, I am starting to feel more like myself. My energy is returning, I'm running, and I've started working again. 

It felt so good to be able to go through the checklist and finally say no:
Have you experienced nausea?
Are you experiencing headaches?
Are you experiencing neuropathy? 
Are you having trouble sleeping?

My next appointment will be towards the end of October when they do the one year post-transplant tests. That's going to be a really fun day.* 

*It's probably not going to be fun. A full day of hospital tests including, but not limited to, a bone marrow biopsy, bone density scan, full blood work, pulmonary function test, EKG... I'm probably going to need a double serve of gyoza, and a nice big bowl of ice cream, at the end of that day!  

After chemo, it is very common for hair to grow back completely differently. I have heard stories of brunettes coming back blonde, straight hair growing back curly, and all manner of variation in between. 

My once straight, very dark, locks came back as super soft, light brown curls. Curious at what my new do would do, I let it grow. It grew from baby fuzz to the huge mop you see above (far right) in just six months. We affectionately referred to it as my "JewFro" (I actually do have Jewish ancestry, so I'm not trying to inappropriately appropriate). 

Having sported a pixie cut for almost five years, this much hair was overwhelming. Curls were also completely alien to me. I had no idea what to do with them. I was ready to go bald again rather than deal with this ever-taller-growing concoction above my head (for the record, I LOVED being bald. I found it incredibly liberating). In desperation, I turned to good old social media. 

My dear friends and loved ones came to the rescue. Cousin Emily recommended DevaCurl, a NYC hair salon specializing in curls. Who knew such a thing existed?! I booked an appointment with a salon in nearby Park Slope.

I nervously sat in the chair. My DevaCurl trained stylist, Diana, stood behind me, scissors in hand. Addressing the mirror she asked, 

     "What would you like done?" 

         "Well... This is the first time I've had a hair cut since my hair grew back curly after                     cancer treatment..." 

Diana's eyes widened.

      "I'm a survivor too!" 

And thus the next hour was spent chatting about the "joys" of diagnosis, treatment, and its aftermath, hair, and life with cancer. All the while, Diana re-sculpted my hair into a cute little bob that I'm super happy with. 

It's the first time since diagnosis that I feel something like my old self again. 

I've heard that the curls might grow out, and my old hair will possibly return, but in the meantime, I'm loving my new locks.

Before Cancer (BC), I was a keen runner. After Cancer (AC), I have struggled to get off the couch. With depression, weight gain, and doctor’s orders to get moving, I needed to find a way to motivate myself beyond “Get Up, It’s Good For You.”  

A quick google search led me to the Ulman Cancer Fund for Young Adults. The Baltimore-based organization aims to empower cancer survivors by providing support, funding, and free programs. One such program is the Cancer to 5km which provides personal training and running groups to help cancer survivors get back into shape. The program is provided free of charge to survivors, and made possible by wonderful volunteers.  

After getting the all clear from my doctor to participate, I was matched with a personal trainer. I was matched with Pat, who is based in Maryland. Although we haven't actually met in person, I can tell you Pat is awesome. Pat’s job is to provide me with a twelve week program to get me running again, and just three weeks in, I'm already seeing results. 

Each weekend Pat emails me with the following week’s regimen. Thus far it has consisted of two workouts to be completed within the week (not on consecutive days). Each run is made up of walking and running in timed intervals, with the running time slightly increased each workout and each week.

Three weeks in, I’m up to walking/running for 27 minutes and yesterday reached a landmark two miles. Running not only provides a great way to see my lovely neighborhood, it lifts my mood, and improves my energy levels. 

Sometimes BC’s voice whispers in my ear, “Pft. You used to run 10km three times a week. This is nothing.” AC’s voice has to politely bitchslap that mofo into place by reminding her that in the past year her body has been through quite a bit. It’s not easy to been given a month to live, go through three rounds of chemo, four days of full body radiation, and a stem cell transplant. One has to often remember to be gentle with oneself. 

My goal is to run in the Dash to the Finish 5km on October 31. On that date last year, I was in hospital undergoing my stem cell transplant. I was totally wiped out from the pre-transplant treatment, and, a few days later I watched wistfully from my hospital window as the runners of the NYC Marathon zipped past. This year, I hope to be running over the finish line in Central Park.

Right now, even though it’s slow and interspersed with a lot of walking, it’s good to be running again.

In last week's post, I promised to write about my glorious return to running, but as this week marked the conclusion of my first cancer support group, I decided to go with that. You’ll just have to come back next week for the running! 

I have a confession to make. I am a RENT-head. For those of you who know me well, this will come as no surprise. My teenage dream was to be involved in RENT in any way possible. I declared on many occasions, usually after the umpteenth time listening through the original Broadway cast recording and singing every role, that if there was a way for me to be involved in a production — even if it meant just sweeping the stage — I would do it. I never once imagined that I would somewhat come to live the score. 

I have since lived my dream, and have been lucky enough to be involved in three different productions as a lighting op, cast member, and vocal coach. Unfortunately, I’m beginning to think there’s a bit of a curse between me and the musical whose message is “no day but today.” 

Each time I’ve been a part of RENT, someone I know has gotten cancer. 

The first time I did RENT, the mother of one of the cast members died from a prolonged battle with cancer. 

The second time I did RENT, a close family member was diagnosed with prostate cancer. 

The third time I did RENT, I got leukemia. A year later, I joined my first support group.

Early on in my treatment, an aunt, who is a breast cancer survivor, insisted I sign up for a support group. I barely had the strength to sit up yet alone sit in a circle and discuss my feelings, but six months after my transplant I was beginning to feel in desperate need for some extra support. 

On top of the physical side effects of treatment, I was dealing with some major depression. Even with an amazingly patient and supportive husband, and network of people around me, I needed some extra help. Along with one-on-one counseling sessions, I took my aunt’s advice and joined a Young Adult Post Treatment Group at Cancer Care. 

Cancer Care provides free counseling, support groups, resources, and financial assistance to people living with cancer. The Young Adult Post Treatment Group is for people aged 20-39 who have completed cancer treatment within the past year and a half, and meets once a week for twelve weeks.  

The first session was also the first time since diagnosis that I caught a train by myself, and the first time I traveled into Manhattan for something that wasn’t a hospital appointment. It was exciting and depressing. Traveling up the elevator to the 22nd floor of the Cancer Care headquarters on 7th Avenue, it dawned on me that I was about to attend an actual support group. The song “Life Support” started playing in my head. 

Over the twelve weeks, the group became my life raft. No matter how tired I was, or how depressed/angry I was feeling, I made myself get to the sessions. Each week, we would share what was going on in our lives, and talk through our cancer related issues. The rules of the group and confidentially means I can’t share the stories here, but I will say that this truly lovely group of people, hailing from all walks of life, a wide range of backgrounds and experiences, were all dealing with the same issues that accompany life during and after the Big C. 

Despite the wide range of diagnoses, we were all going through similar experiences. From hair loss and regrowth, weight loss and weight gain, depression, anger, frustration, dealing with families/friends/spouses, dealing with doctors, ongoing tests and results, fear of relapse, to what it’s like living post-chemo in the NYC summer, talking through life after cancer with a group of people going through the same thing was hugely helpful. It didn’t make the problems go away, but it was a relief to know we weren’t alone in our experiences. 

This week, the final week, we looked at pictures of each other before and after treatment. We laughed at old hair styles, and how much we have all been physically changed by treatment. We compared scars and port sites, and shared pictures of our families and pets. I am immensely grateful to each person in the group, for their personal strength, their humor, their willingness to offer the tissue box, for sharing their stories, and just for holding space. Our moderator was wonderful, and did an amazing job of guiding the conversation and providing insights. 

My support group may not have sung a single note, or even preached about living each day as if it were our last, but it certainly uplifted and provided me with a supportive space to share my experience. 

I'll hopefully be able to join the group again when it starts back up in October, and I’ve also signed up for a leukemia specific group which starts up in a couple of weeks. 

In the meantime, I don’t think I’ll be signing up for a production of RENT any time soon… 

Update: 
An amended version of this post was featured on CancerCare's "Stories of Hope and Help." 

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. 

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.

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.  

One of our main mantras at camp is “process over product”. This mantra is complicated in the theatre department by the fact that the product is the process. I had hoped these camp entries were going to be the sunshine, lollipops and rainbows of the experience of working with teenagers at a progressive creative and performing arts camp. That I would write about the fulfilling joy of being part of a team to create a musical with immense time constraints. That I would twirl like Maria on a goddamn mountain in celebration of all that is summer camp. And sometimes, we just have to accept, the process is not these things. Sometimes, it’s really, really hard. And you are so exhausted that you can barely differentiate your left from your right, or which way is up. 

Here is a confession. The past nineteen days have been intensely difficult. It is one thing to stage a full-scale musical in nineteen days. It is another when your cast are involved in other productions/performances (various combinations of clown/music/dance) at the same time. When they have field trips. When they are designing and building puppets from scratch. When they are stubborn. When they believe they know it all. When they are late to every single rehearsal. When they don’t do their homework. When they refuse to work on their puppets. When they just want to have fun and not come with you on the journey of hard work = reward. And on top of it all, you are simultaneously working in the music shed and teaching thirty individual singing lessons and preparing students for a concert. The schedule is jam packed, the days are long, and everyone is continually stretched to their limits. Remember how much I love this place?! 

It’s hard to believe we sat down to cast this monolithic baby just two and a half weeks ago. The next afternoon we began rehearsals - a meet and greet with the cast, some basic puppeteering, and a read through the script. Every day after that the cast were called for music in the mornings, and blocking and choreography rehearsals in the afternoons. In between rehearsals, the cast had to design, construct, and learn to use their puppets,   and memorize lines and music, all whilst juggling schedules to include other rehearsals, lessons, and time in the visual arts shops. 

My job in the musical is to look after the music. Working with our wildly talented conductor and keys player, Brandon, we rehearsed the dots, did vocal coaching sessions, and rehearsed the pit band. I particularly love working with students who have never sung before. One cast member had never sung in a musical before, and was nervous about belting. She wasn’t sure if she could pull off her role. We did a few sessions together, and during a sing through of the show, she NAILED her part. I was in tears at the end of the number. Where did all the power come from? All those amazing acting choices? It’s moments like that, that make all the crazy long hours and piles of stress, incredibly worthwhile. 

The show went up last night. The creative team were absolutely exhausted. We had spent the previous night in dress rehearsal, and the two nights previous to that in tech. All three nights had stretched into the early hours of the morning, with the kids being sent “home” (back to their bunks) a little after midnight. Come show time, the weather was against us. Oh, the perils of outdoor theatre! The theatre is covered, but open to the elements. I sat with the choreographer, Nina, one of my favorite people in the world, our hands gripped tightly in solidarity of “oh god, we hope they nail it!”. It poured with rain. The sky flashed with lightening. Thunder rumbled ominously. The kids were troopers. The show went on. The audience roared in appreciation, and cheered at the end of every number. At the end of the night, we loaded the instruments back into a van and took them up to the Music Shed. The tech army started striking the set. The kids went up to the dining hall for post-show cake and celebration. They were beaming.

The feedback has been delightful. Buck’s Rock audiences are the most supportive you’ll ever find. All day I’ve been receiving the most lovely comments about how great the kids sounded, how strong the pit was this year, how hilarious the show was. In these moments, I forget the exhaustion and stress. I remember why I love working on these shows. The product may be different to what we were expecting on day one, but the process has been one hell of a ride.