It’s hard to believe to that tomorrow will be 300 days since I’ve started this whole journey. It is ironic, I suppose, that I discovered this poem today that really captures the essence of the journey our lives are to meant to be. It also speaks to the idea that the darkness that enters our lives is only what we imagine it to be – if we don’t invite it, it can’t exist. I just wanted to share it here and also keep it in a safe place for me to remember:

Ithaka by Constantin Cavafy

As you set out for Ithaka
hope your road is a long one,
full of adventure, full of discovery.
Laistrygonians, Cyclops,
angry Poseidon-don’t be afraid of them:
you’ll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians, Cyclops,
wild Poseidon-you won’t encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.

Hope your road is a long one.
May there be many summer mornings when,
with what pleasure, what joy,
you enter harbors you’re seeing for the first time;
may you stop at Phoenician trading stations
to buy fine things,
mother of pearl and coral, amber and ebony,
sensual perfume of every kind-
as many sensual perfumes as you can;
and may you visit many Egyptian cities
to learn and go on learning from their scholars.

Keep Ithaka always in your mind.
Arriving there is what you’re destined for.
But don’t hurry the journey at all.
Better if it lasts for years,
so you’re old by the time you reach the island,
wealthy with all you’ve gained on the way,
not expecting Ithaka to make you rich.
Ithaka gave you the marvelous journey.
Without her you wouldn’t have set out.
She has nothing left to give you now.

And if you find her poor, Ithaka won’t have fooled you.
Wise as you will have become, so full of experience,
you’ll have understood by then what these Ithakas mean.

Things have been quiet this week with no trips to the hospital and no blizzards keeping the kids home from school. Today is the first day I have been able to a have a full “me-day” and get back on track with organization, work and some relaxation. This past weekend was great. I got to catch up with a few friends near and far for a belated birthday celebration at Boordy. It was a lot of fun … and I let the real hair out of the occasion. For the most part, I’m hoping to be finished with the wigs. They are becoming a little bit of a pain and I feel like I’m hiding underneath them. Although I am not at all thrilled with the length or look of my hair right now, it is nice to just be me. In time it will come in and I will get more comfortable with it.

I have been a bit stressed lately though. The past few days I have had low-grade fevers (99-99.9) and I think it triggered a complete meltdown/panic attack. I assume my body is just fighting something, but as a friend pointed out, after the fevers from the summer, it is almost like PTSD. There is nothing else wrong that I am aware of. This is also coming off of a week where I tried to detox on sugar, go vegetarian, give up coffee, potty train my 2-year old and increase my exercise level (and overdose on dark chocolate to try to keep things in balance!). I suppose anyone would have a few headaches and fevers after that. I realize it was a little too much to take on at one time.

During my hospital visit last time I overhead a young man tell his nurse that his leukemia may have returned. He is 3 cycles ahead of me on the trial and I think he is younger than me. That was devastating to hear and I have had that on my mind ever since. I know that every patient in remission goes through this – I just didn’t realize how hard it would really be. I’ve been talking to friends, therapists and other types of healers and I think that all agree it is important to acknowledge our fears and self-doubts and by doing so we take away their power. So here it is …

• I am afraid the cancer will come back.
• I am afraid that I won’t stay strong enough.
• I am afraid that stress will negatively affect my health.
• I am afraid that I may not make the right decisions regarding diet, exercise or general wellness to keep this from every coming back.
• I’m afraid I may not get to see my kids grow up.

There, I said it. Brian did an excellent job of helping me work through these fears last night, acknowledging that they are okay to have but that I can’t make them more powerful than they are. I can’t put the kind of pressure on myself to eat the perfect diet or exercise all the right ways if it is only stressing me out more in the end. There has to be balance. And the truth be told, as much as believe that diet and exercise play a role in health and wellness, I believe that love, friendship and our overall happiness play a far stronger role. That is what I need to focus on and the other things will fall in place.

As I mentioned, 2011 is my year of fearless living (ha, ha, I’m doing great so far!), but February is my month to focus on love and friendship. I’m doing my own Happiness Project, based on the book, and January was all about organization. I believe I had some successes in January and I hope to carry those through to February.

In honor of my February project, I wanted to share this poem that my friend Kelli shared with me, about the importance of loving ourselves:

Our deepest fear is not that we are inadequate.

Our deepest fear is that we are powerful beyond measure.

It is our light, not our darkness that most frightens us.

We ask ourselves, who am I to be brilliant, gorgeous,

talented and fabulous?

Actually, who are you not to be?

You are a child of God.

Your playing small doesn’t serve the world.

There is nothing enlightened about shrinking

so that other people won’t feel insecure around you.

We were born to make manifest the glory of God within us.

It is not just in some of us.  It’s in everyone.

And as we let our light shine, we unconsciously give

other people permission to do the same.

As we are liberated from our fear,

our presence automatically liberates others.

Marianne Williamson A Return to Love

One more thing before I go, as I mentioned I’m playing around with my diet right now. I’m doing a lot of research on what’s good and what’s bad for cancer. There is a lot of evidence pointing to a vegetarian/vegan diet as a way to keep the body free from cancer cells – it limits their ability to grow. A British study I came across yesterday mentions specifically, a 45% lower rate of leukemia among vegetarians that those who eat a regular diet. I’m not going to put the kind of pressure on myself to conform to one thing one way or the other but I would love to hear from any of you that have recommended readings or thoughts about this. I’m trying to make a well-educated decision about what would be best for my body and overall health.

I have been meaning to sit down and write for a few days now but the snow has completely detoured most of my well-meaning intentions. It seems my kids are only going to school 2-3 days a week lately between holidays and snow. I actually got a snow day myself today when the plow had not gotten to the street by the time I was supposed to get to the hospital for blood work. I really would have liked to go just to have a better idea of whether or not I am starting Round 2 of chemo on Monday, but now I won’t know until literally Monday morning. I will go in for blood work and if things are where they need to be I will start chemo then, otherwise I will be delayed again or potentially pulled off the study. They said not to think to that extreme the last time I went in (last week) so I’m not all too worried about it. The issue is just that my platelets weren’t high enough.

The snow is definitely stressing me out. Last night we lost our power and were hovered in sleeping bags in front of the fire all night. It was actually a really wonderful family moment, yet in the back of my mind I was initially thinking about how I was trapped in my house and what if I had to get to the hospital? I know it was silly, but it is funny how your mindset changes after you go through things. This morning I was out to shovel the driveway as fast as I could because I didn’t wanted to be “trapped.” We are scheduled for snow again next week and I am already wondering if I’ll have to sleep in a hotel for 3 nights while I go for chemo just so I make sure I can get there in the morning. So dear snow, please go away! And as my friend Heather pointed out, let’s all keep our fingers-crossed that the groundhog does not see his shadow next week.

In other news, I went to New York last week which was my first escape from home in almost a year. We had an amazing time. We went to see Blue Man Group and I was randomly picked out of the audience to go on stage. When I saw them eying me up, the only thing going through my head was “oh god, don’t pick me because what if my wig comes off on stage in front of all these people?!?!” It turns out Brian and my cousin were thinking the same thing. Fortunately the powers that be were on my side that day and the skit I was doing didn’t involve any hair pulling. It was a really fun scene that I got to be very playful in – or as my cousin said, “cheeky” – and I have to say, it was one of the most fun, memorable moments of my life. I loved it. Below is the photo they took as we walked off stage …

They obviously had no idea who they pulled on stage or how much it meant to them. I’m thinking of writing them a letter to let them know.

This weekend I am so excited for two major events. Saturday, Brian and I were invited to the Ulman Fund’s Blue Jean Ball as a guest of Brian, one of their directors and someone who has become a great supporter and friend. Sunday, Roseann, my fabulous triathlete oncology nurse, is hosting an open house for The Healing House, an idea that she and I conceived of while I was in the hospital. You can read more about the event here:

http://www.teaminspiration.org/index-4.html

I can speak for myself, and probably a little for Roseann, when I say that it is very surreal that this event is taking place on Sunday. When we first talked about it, the idea seemed so distant and almost fanciful, but through Roseann’s hard work, diligence and good fortune of connecting with so many wonderful people, it is all becoming very real. I will keep you posted on all of this.

Lastly, I wanted to share a video I watched today by a writer name Bruce Feiler. He wrote a book called “Walking the Bible,” which you may have heard of. A few years after publishing that he was diagnosed with a very rare form of cancer that was discovered in much the same way mine was – “a routine doctor’s visit and a routine blood test showed one blood level was off.” He had two young twin daughters the same age as my oldest son (four at the time) and he and was came up with the idea of creating a “council of dads” in case something should happen to him. Although the video only speaks about the council for a brief time, the reason it was so powerful to me is because he talks about how cancer has the power to transform friendships. And the words he used to describe the experience of having people visit him and the conversations that took place completely mirrors my own sentiments, although he explains in such an eloquent way that I haven’t been able to. Below is a quote I transcribed. If you don’t have time to watch the video, I hope that anyone reading this who is going through this experience or supporting someone fighting their own battle will understand that the “beautiful gift wrapped in the ugly package” of cancer is truly the bonds we form with those who join us on the journey.

“Cancer is a passport to intimacy. It is an invitation — to enter the most vital arenas of human life, the most sensitive and the most frightening. The ones we never want to go to but when we do go there we feel incredibly transformed.” – Bruce Feiler

He describes how the treatment transformed him physically into something less human. He lost 15 pounds, he lost his hair, he became a ghost. He expected that those around him would back away, yet the worse he got, the closer they came. Having lived through this very experience, I can’t even talk about this without crying because it is the overwhelming power of the love and support that people gave me at those very worst times that pulled me through and fill me an unexplainable amount of joy every single day. If there is one thing I have learned from this experience, as I know you all hear me say over and over, never let a day go without fully sharing love and friendship. In the end it is the only thing that matters.

Okay, I’m done with my lecture for today. But seriously, if you have a moment for a little warm cry, please watch the video …

I went in for bloodwork on Thursday and my white counts were STILL really low. They had budged slightly, up to 1.1 from 0.7. The doctor wasn’t concerned and told me not to worry about it so much. She said I should live my life normally and gave me the okay to travel if I wanted to. Going to any major city with a big hospital is fine, but she would prefer I stay away from remote locations until my counts improve. She also told me not to keep myself locked in the house – it’s fine to go the grocery store, a restaurant, whatever, just wash my hands. My kids are the biggest threat to my health because they will probably carry the most germs. She said there’s no need to wear a mask or restrict my diet because there’s no scientific evidence that any of that means anything in terms of cutting down virus transmission, but washing your hands does. My oncology nurse was there too and, I think, kind of dumb-founded because when we are in-patient they are so strict about everything and they reinforce those instructions with us. Outpatient is definitely a different world, but I much prefer it to being in the hospital again.

I’m not going to rush off to vacation – yet – but I have been getting out more and worrying less. I know my counts have to come up eventually … And I do have brief vacation plans in the coming weeks that I fully intend to fulfill.

Tomorrow I turn 35 and, as I told a friend of mine, I can’t believe I’m actually excited to be getting older. I think each year will feel like an accomplishment from this point forward. So in the spirit the new year and another year older, I’m just going to share this quote I came across today. I had clipped it from a magazine in 2009 and I just found it this morning when I was cleaning out the folder where I keep all of these random things. It sums things up perfectly.

“The knowledge that you have emerged wiser and stronger from setbacks means that you are, ever after, secure in your ability to survive. You will never truly know yourself, or the strength of your relationships, until both have been tested by adversity. Such knowledge is a true gift … It is painfully won, and it has been worth more to me than any qualification I ever earned.”

- from J.K. Rowling’s 2008 Harvard commencement address

Well, its been 98 days since I started this process. I’m wondering if my body is waiting for day 100 to send me home. Wouldn’t that be ironic?

My white counts were still down today but tomorrow is a new day and anything is possible. Although I am in a good place with all of this, having my counts go up – even if I don’t go home yet – would be a real thrill. And when I say thrill, I mean it. I would literally be bouncing off the walls if they would start to go up. Waiting and waiting and waiting is just torture. Patience is not a virtue I was not born with and learning to have it is hard, darn it!

All of that said, I had a pretty great day today. I got a huge surprise when Amanda came to visit this afternoon. It was so good to see her and talk. My dad brought be lunch and then I roped my brother and Steph into bringing me dinner. Somehow I’ve managed to avoid hospital food for quite a few days now. It’s a good thing though because the last time they weighed me I had put on 3 pounds! Just 8 more to go and I’ll be back to my normal weight. Unfortunately it’s all sitting in my belly right now and hasn’t spread out yet. I know once I get back to building some muscle it will help. Having the extra roll in the belly is also a good thing because that’s where the neupogen shots go. I’m on my 4th day of those now and I still don’t like them. Some things never get easier but I guess you get used to them.

I also got to talk to Dan, an AML survivor today. Dan finished his stem cell transplant and went home the day after I came into the hospital to start my first chemo in June. He is doing great now. We’ve talked several times over email, but it was really helpful to speak over the phone today. He did the exact same protocol that I am following so it was very interesting to hear about his experience. No two people will ever have the same experience, but I can only hope to recover as quickly as Dan did. I believe in my heart that I will but I have quite a road ahead of me. Thank you Dan, as always, for the inspiration and being so open in sharing your journey with me.

I heard a great quote from a cancer survivor today. She is a uterine cancer survivor, several years out, and she was talking about how no one ever wants to get cancer and she would never say she was grateful for having it, but ultimately it changed her life in a positive way. Her quote was, “sometimes the best gifts come in the ugliest packages.” I hope that I will feel that way when I have recovered from all of this.

The weather was beautiful today and I hope everyone got out and enjoyed the last day of summer. Some of us (and you know who you are ) couldn’t be happier that this summer is over. Here’s to having faith that the change in seasons means wonderful changes for all of us!