When to Unfriend?

So I don't spend a lot of time on Facebook. But I do much more lately because I get such nice messages from people cheering me on. Old friends. New friends.  New friends that could have been old friends, but it never happened till now.  And old friends that I can hardly remember.  (I blame that on chemo brain. Please let that be something real, or else I have no excuse!)

So, looking at my FB page the other day I saw that I had 222 friends. That feels like a lot to me. I was so proud. Plus, I love that number. It's kinda sweet.  (Remember Room 222 with Karen Valentine?)
So, anyway, big shock today when I saw I only had 221 friends!! Oh my goodness! Someone un-friended me! Who? How? Why? What did I do?

I'm not sure I really care, but it sure makes me want to play the cancer card. "Hey! How can you unfriend someone with cancer?!"  My 222 was hard-earned! Losing a member has been difficult.
I've never unfriended anybody. It seems so mean. So I hope that whoever unfriended me realizes that they've made a terrible mistake and if they come back begging, you know I'll accept them!

The Cancer Card

My friend Jenny was here with me for 10 days from L.A. She's leaving today. Probably getting on the plane right now. Old friends.  You can't live without them.

I've been seeing my closest childhood friends much more because of this stupid disease. They have stuck to me like glue. They've made my life feel so full. Normally we see each other so rarely.  We live all over the place, we have little ones and we have careers. When we plan a trip together, I would stress because I knew how much my heart would hurt at having to say goodbye again. Isn't that silly? But it's true. I felt that again, this morning when Jenny left. But I know she's snug in her seat with lots of good movies and Pret sandwiches to eat, aaaannnnnndddddd, because of this stupid disease, I know she plans to come back to London again...I'm grateful.

And tomorrow, Allison flies in to be with me. For two weeks! And then Susanne comes and then Kaethe. These women are no joke. They act with full hearts.

And how about all this attention I'm getting because of this stupid disease? When I was well, did I not feel the need to be near my closest friends so intensely?  Or the need to breathe in the scent of my kids' heads so deeply?  Did I not love to lay my head on Andy's chest every night? I know I did. And now, because I'm unwell, I get to have what I want so much more often!  Isn't that interesting? It makes a good case for hypochondria

I know I'm not forcing anyone, but I am definitely inconveniencing everybody. Yet I get to have this closeness that I've always loved, around all the time. It's my favorite thing. A close family is bliss to me, because I didn't have it growing up. And I thrive on close friendships because I did have it growing up. And it saved me, Just hanging out and laughing has incredible healing power. Are there any grown-ups out there whose favorite thing is still hanging out and laughing? Or should I just grow-up right now?  (You don't have to answer that)

One day, maybe a year from now, I'll be a regular civilian again. And I know things will change.  How often will I get to see my childhood friends?  How tight will my kids let me hug them? I know Thank goodness for the dog.

Sickness should never be an identity. But it can weasel its way into your life kind of in the form of the Cancer Card. People say, "Play it!" I've even had people play it for me. We've had some fun with it. But one day,  I look forward to handing in my Cancer Card. I don't know what will replace it in the back pocket of some great new pair of jeans. But I know something will. When I close that door, a beautiful window is bound to open.

Just Wanted to Water the Garden

Wow. Did anyone get the name and license plate number of the horse I fell off of?  I think he was called the Neighhhhhh Sayer…

Incommunicado is where I’ve been. When shitty things happen it’s just so hard to talk about and, write about. It just makes you think about it more. Who wants that? But then I know people get concerned and start to talk to each other and I feel badly to go radio silent on a support system that has been so stalwart.

How many times can you say, “Yeah, the chemo didn’t work.  I have to do more. It sucks. I hope it works this time. The transplant’s postponed yet again. I’m completely freaked out”   

I have to thank Andy again for scraping me up off the floor as I’m rewriting our will in my head, writing good-bye letters to my kids and crying my eyes out.  It’s a big job for him.  He’s obviously freaked out too.  But he let me cry and I just needed to do that for about six days. Then a week to recover from that. And then finally I approached the thin edge of Ready. To Start another round.

This round was so much chemo it was disgusting. Small(ish) amounts of chemo diluted into large bags of fluid. But my lord, it was bag after bag after bag.  One drug was an antibody. One was derived from mustard gas as it was discovered during WW2 that soldiers and citizens exposed to it had become neutropenic. How awful. 

A friend sent me a link to an article about chemotherapy medicines derived from plants and animals from the coral reefs. One was Ara-C. I’ve taken it a number of times. So, you take care when you’re scuba diving.  Don't brush up against anything!

After this round, I stayed at home until this past Sunday and then I spiked the dreaded but expected fever. I was really angry because it just came on while I was in the garden potting violas with Ari.  Well, I was planting and he was scootering around waiting until he could water. He likes to water. We have a cool hose that has settings like Angle, Jet, and Rain.  So, regardless of the fact that it’s been raining here on and off for a month, he saw watering as necessary.  I feel bad he didn’t get to water. Instead, when I said I had to go back to the doctor, he said, “Mommy, how many days?” Broke my heart. 

I think when you add it together, I have probably spent a total of one year in the hospital. Maybe more,  I don’t feel like doing that math, but I think it’s about that much.  And that just sucks for my kids. I’m still here of course, on Earth, full of affection and opinions. But I think of the changes for a kid whose otherwise available and spunky parent becomes ill.  It’s a loss.  For Ari, being five, it’s part of how he sees me or knows me. I hate that. 

And for Isaac, starting middle school, the last thing you want to be is different in any way.  I think when you hit 13, the world opens up to you and it’s a time when kids start to not just think about themselves. It’s a great time because it's the beginning of true compassion. My fear is this has been forced on Isaac too soon. He’s incredibly supportive and kind and has never given me a single hard moment about my cancer treatment. He hugs me and rocks back and forth. It’s so nice. I hope he feels well enough taken care of.  Andy and I try so hard. Isaac is so ‘together' at home and perfectionist at school. I visualize a bubble of love around both my kids all the time. And I know other people do too.

So, don’t tell the doctors, but I’m hoping to fly this hospital coop by Saturday. If I’m feeling then as well as I am right now, I’d rather be enjoying my significantly less germ-laden home than this hospital. Clean as it might be, it’s still a hospital… Besides, Allison is coming on Friday and she hasn’t met my dog yet. Laila’s takes cute classes everyday and get's A+'s.

Pissed Off

It is so much easier to blog, (or even talk, for that matter) when there are good things to write and say. But I promised this blog to myself, as a way to document or share, this process of getting cured of Leukemia. It's a nasty nasty disease, and it won't seem to go away. This last round of chemo did not do the trick. So I can not go to transplant yet.  Ethically they will not do a transplant here unless someone is in full remission. So I am going back to the hospital on Thursday to start another round of chemotherapy that will likely keep me there for another month. For someone who powers-up from sunshine and flowers, this is truly hard to stomach.

This new round has two entirely new drugs in it. One is an anti-body that the doctor feels positive will target my type of leukemic cells. They haven't done it earlier because it can be hard on the liver and their motto is "least harm".  But in my case now, the benefits of this anti-body drug out-weigh the risks. The doctor said I should not feel any worse than during any other round I've completed.

If anyone out there is reading this, please know that I feel perfectly well. I have never felt badly from leukemia, only chemotherapy. But for the record, I am not Wonder Woman at all. I am really sad these past few days. Getting these imperfect biopsy results sucked. Sad and broken-hearted is the best way to describe how I feel. All I can think about are my kids and my poor husband. I used to dislike the term "battling cancer".  I'm not a huge fighter type and I preferred to think of it as "releasing cancer".  I just had to "let it go". "Clear out". But this has turned into an indescribable battle, because cancer is a freaking tenacious bitch.  This is no doubt a fight. A war. And I'm still planning on winning.

I resent how much focus cancer has now won from me. It used to be more of a side job, but now it has become a full-time job, and I'm pissed. Really pissed off.  Dreams of beating cancer have taken a seat in front of all my other dreams.  Must this define me for me to beat it?  Do "I" have anything to do with it?  What power do I really have? I only know that I have power over how I behave and how I think. If I can really own that, then I know I can always be proud of myself, as a mother, a wife, a friend. So, although this week is filled with tears for me, I know that this is not all that I am. I know that I will find strength from new places. I'm just not sure what they are yet.