Treatment update video

Just posted this to YouTube so check it out.

http://www.youtube.com/watch?v=jhd7CbAx9ZQ&feature=youtube_gdata_player

Treatment, friends, etc....

Treatment update

Finally met with doctors yesterday and now have a plan...

The appointment with the doctors yesterday went about how I expected. I'm going to include some medical stuff here in case you want to do some research and find out what all this crap means. I would recommend Breastcancer.org as a place to start. They have a ton of information that's easy to read and understand.

I have Invasive Ductal Carcinoma, grade 2 tumor between 1-1.9 cm with a second tumor at 4 mm in my left breast. There is a lymph node under my left arm that's about 4 cm and probably cancerous. They did a biopsy on it yesterday just to confirm this. However, IDC is the most curable and easily treatable cancer. The doctors kept referring to it as "garden variety" breast cancer. The IDC is estrogen-receptor positive and progesterone-receptor positive, which means these hormones can help the cancer to grow. It is HER2 negative, which is another deals with genetics and if it's negative, it doesn't influence the growth of cancer cells. With that information, it appears that I am Stage IIA, which means there are tumors under 2 cm and lymph node involvement.

Treatment options that were discussed were what I expected. Option of lumpectomy or mastectomy. I'm going to opt for lumpectomy because I have no history of cancer in my family so shouldn't need a mastectomy. Approximately one month after surgery, I will undergo chemotherapy for 4-6 cycles, which will go over a couple of months. Cycles appear to be 2-3 weeks in length. Following that, probably 6 weeks of radiation, 5 days a week. This is fromBreastcancer.org:

"Chemotherapy usually is given in cycles -- a specific period of treatment followed by a period of recovery. For instance, you may get chemotherapy on the first day of the cycle and then have a few weeks of recovery with no treatment. That is one cycle. Or you may get chemotherapy for several days in a row, or every other day, and then have a recovery period. A complete chemotherapy treatment is made up of several cycles. The number of cycles in a regimen and the total time of each regimen varies depending on the medicines used, but most regimens take 3 to 6 months to complete."

Because the cancer is hormone receptive, I will also be taking Tamoxifen, which helps keep the growth of the cancer from being attached to and growing from hormones.

Whew. That's a lot of info. Let's get to some lighter stuff.

The two doctors - Dr. Catherine Dang and Dr. Jennifer Lin - were awesome, as was everyone I saw yesterday. And they seemed to take good care of the Filmmaker while he was patiently waiting in between examinations and information. They looked like high school girls playing at being a doctor and The Filmmaker has dubbed them the "Hello Kitty" doctors. But they were precise and comforting, not giving too much information and being clear about what decisions needed to be made immediately and what decisions could wait. They assured me that even if it takes a few weeks to schedule the surgery that the cancer is not fast-growing and a week or two won't make a big difference. Dr. Dang is the presiding doctor and I think Dr. Lin may be in training but she certainly didn't feel like she was an intern or anything.

So the next step is a full body CT scan to ensure that there isn't cancer in any other part of my body, which they didn't seem to be too worried about. Then I meet with the doctors again and we will probably set the surgery date. The chemo treatment, etc., will probably be decided after the surgery, once they get all the lymph nodes out and biopsy everything again. Much biopsying will be done.

And The Filmmaker took exceptional care of me yesterday. My favorite part was the trip to the Edison for a happy hour dinner with champagne and grilled cheese and tomato soup. What a beautiful place. I want to live there, please. 

In other news (sorry this is so very long), my colleague, Allegra Newman, has almost finished putting together the Give Forward page and it will be going live soon. This is a fundraising site that she's hoping to use to help raise some money for me so I can pay my bills while going through treatment. I will post the link once it's live.

So stay tuned. We're just beginning...

Hope-ish

For this moment, I have hope.

I went to a cancer resource center here in LA called WeSPARK, founded by Wendy Jo Sperber (you win the trivia contest if you can tell me who she is) who was diagnosed in 1997 and thought cancer patients should have somewhere comfortable and free to come and receive adjunctive care - support groups, exercise classes for people dealing with cancer, etc. She wanted it to feel like home.

WeSPARK was recommended by several friends of friends so I went. The intake counsellor turned out to be my therapist from oh, so long ago when I left my marriage. Couldn't ask for someone more appropriate to help guide me through this new journey since she was so amazing during that last one.

In talking to her about my diagnosis, we of course talked about my life since I last saw her probably five years ago. Back then, I think I had just moved in with my parents, had just started my teaching job and was still trying to figure out if the original OOMA (object of my affection) was something real or if he was just a friend. I was on my way to healing but still had a long way to go.

But in talking with Bonnie, I was overwhelmed by how amazing my life really is. It's easy to forget that in the midst of every day struggles, never mind a breast cancer diagnosis. She kept expressing delight at how things have turned out for me - the fact that I am still teaching fine art and that I love it more than I ever thought I would; that I probably will be running my own studio soon; that I am a fairly successful artist; that art has enriched my life so much;  and finally that I'm in a healthy, grown-up relationship with a healthy, grown-up man. She was also delighted to hear how I've learned to handle situations that used to just about cripple me and that I'm finally in a good, strong place mentally.

She pointed out that, yes, these next few months are going to be hell. There's no way they're not. I always liked that she never pulled punches but yet was also gentle and kind and funny. But she said that the best thing I have going for me is that I have such a beautiful life outside of this diagnosis. That I have great friends who are holding my hand. That I have an amazing community who are pulling out all the stops to make sure I'm taken care of. Job that I love. A man who I adore. Those are things a doctor can't prescribe. Those are things that many women going through this journey don't have. And those are the things that will still be there when all is said and done.

Bonnie also emphasized that I should realize that breast cancer isn't an endgame. I can deal with it, especially if it is early. I can handle it. I can come through it to the other side and continue to live this amazing life I've built.

And she also emphasized that this life is amazing and beautiful because I am amazing and beautiful. That I would not have all of you incredible people in my life if I wasn't at least just a little bit incredible myself.

After that meeting, I taught for the next three days. And I looked at my life a little bit differently. 

I love the kids I teach. No matter how sad, blue, beat up and pissed off I am, these kids fill my soul. What other job can you have where you get hugged all the time? Where the highest compliment is being told that you're very funny and that makes the class great? And I also get to teach the Filmmaker's daughter, who is a very promising artist and who is one of my favorite kids on earth.

And for today, my body feels good. I did an hour of yoga and was happy to find that my many months of inactivity hasn't killed my flexibility. 

And right now, I'm on the bus on my way to the Filmmaker, to sit on his couch and watch "Mad Men" and just enjoy his company.

And for the next few days until I meet with my oncologist and life becomes all about my left breast, I am going to embrace the sense of normalcy and take each day and breathe it in.  Yes, I'm terrified and, yes, I'm scared and panicked and all of those things. But underneath all of that, I am hopeful. And I will hang on to that hope into I get to the other side.

I hope to see you there.

Fear itself

I’m scared.

No, really.

Very, very scared.

These past few weeks since my diagnosis, I’ve had some moments of fear, among other emotions. Anger, of course. You read that one.

But without having met with an oncologist or breast surgeon yet, it’s been kind of easy to almost pretend nothing’s wrong. Sure, I get tired very easily. Sure, there are the occasional bouts of aches in my breast and my underarm but they don’t last more than a few moments and they’re not terribly painful so it’s easy to brush them away.

And people have commented on how impressed they are with the way I’m handling this diagnosis. Sure, it’s easy. There’s nothing going on yet to handle, other than making phone calls and chasing pathology reports and fighting with bureaucracy to actually get an appointment with someone who can tell me what the fuck is going on.

But other than that…

It’s been easy, sort of.

Last night, the Filmmaker came over. Haven’t really spent time with him for almost two weeks. I should have been working on paintings I have to do for one of my classes but I thought, you know what? I’m going to choose to live my life and enjoy time with this lovely man and figure out the paintings later. I knew I had some time today to paint in class so I chose to be with someone who makes me happy and who gives me great comfort.

And as usual, as we fell asleep, I once again couldn’t help but think about how great it feels to just lay there in the crook of his arm, listening to him snore and occasionally mumble nonsense in his sleep. I could do this every night.

And that’s where it began.

Now, I’ve had nights previously – especially when we first started dating – where I would quite literally cry as we fell asleep, so absolutely afraid that I was going to lose him for any number of reasons. I think every woman feels that way when they find someone they care about a lot. Normal, realistic fear about something that won’t happen for a long time, probably. Something in the future, something fictional, something easy to ignore and push away.

But it wasn’t just that fear last night. It was the fear of so many other things. The obvious – will he still want to sleep with me and make love to me when I’m scarred and raw from radiation treatments and maybe losing my hair from chemo? What man would want that?

But it went beyond that.

I’m afraid of what he’s going to go through as I move through treatment. I know he lost his father to cancer and I can only imagine what this might bring up for him.

And the way I feel snuggled up in his arms as we sleep is such an obvious metaphor for so many things in my life. My artwork. My school work. My directing. My life overall.

I finally pushed aside the fear, chalking it up to just a normal, regular visit from the clowns in my head, trying to stir up shit just to take away any joy I have.

And we got up this morning and he kissed me and went off on his day. And I went to school, did my two classes. I was supposed to finish two paintings today but I kind of gacked on the first one. I don’t like it. It’s not as good as the other two in this particular series I’m creating for class. I had a very long moment of fear – fear of losing my artistic ability. Fear of what the surgery is going to do to my ability to paint (the lumps are on my left side and I’m left-handed). Fear of losing this amazing gift that I have so recently found.

But I pushed it off as regular, normal clown shit and pushed through the day.

But tonight, sitting on my couch, real, true fear crept into my heart as I went through what little information I have on my diagnosis as I prepared for a meeting I have in the morning. I’m going to a cancer support organization here in Los Angeles called WeSPARK (wespark.org). They offer a variety of support groups, seminars, therapies and even yoga work outs for cancer patients, all for free and all to give us the support we need.

And as I gathered some papers together, just in case I need them, it really, REALLY hit me.

I have breast cancer.

I know I’ve been blogging about it and saying how it’s hit me. But moving forward on something concrete, where I will have to go in tomorrow and talk to someone about exactly what’s going on, about my diagnosis, and actually discuss the reality of the disease suddenly makes it very, incredibly real.

I have breast cancer.

And there’s no more pretending and ignoring and playing at normal. My life from now on will be about breast cancer. No matter what I do while I move into treatment, treatment is going to be at the forefront and will force me to consider it in every decision I make.

And my life suddenly narrowed down to a teeny, tiny point.

I have breast cancer.

And nothing will ever be the same.

And I don’t know how many easy, lazy nights there will be now with the Filmmaker, where it won’t be about how I’m feeling or can he touch me there or does that hurt or…

And I don’t know how much longer I’ll be able to just pick up a paintbrush and paint to my heart’s content. Already, I can only paint for significantly shorter bursts than I’m used to. And I’ll have to think about conserving my energy or whether or not I can lift my arm to paint or…

And no matter who’s at my beck and call, it’s still going to be a very lonely ride. Reading the posts on the discussion board I belong to, they are full of “my husband” and my partner” and “my significant other”. Someone who’s there all the time. Someone who is just an arm’s reach away.

I have a cat who’s an arm’s reach away.

And I’m so absolutely terrified tonight about what’s next. So absolutely terrified.

Because, starting now, nothing will ever be the same.

Better now

Okay, not so crazy today.

It’s been an emotional roller coaster since my diagnosis. Some days, I’m sane and totally in control. Other days, my emotions change as fast as the weather in San Francisco.

But I won’t apologize. The challenge with writing this blog is that some days, I look back at what I wrote in the previous entry and I kind of cringe. Did I really say that? Yeah, I did. That’s how I felt at that second, at that moment, deep in my head and my heart.

And it’s also challenging because I know that some of the people I talk about actually read this blog. But I promised when I started that I wouldn’t hold back unless someone told me to hold back. So if you’re in my life, you’re in my blog, unless you tell me to do otherwise.

But I have to write like no one is reading this. And let the chips fall where they may.

Today, I feel centered and in control, for the moment. Maybe it’s finally getting an appointment set up for a week from Friday to meet with a breast surgeon, someone who may actually be able to help me figure out my treatment. Maybe it’s that I got to spend the entire afternoon in a beautiful park, painting, as part of my watercolor class. Maybe it’s that I got some of this shit worked out when I blogged.

And I’m trying not to obsess over the fact that I currently have a B in most of my classes, instead of my usual A. And I’m trying not to freak out about that. There’s enough time left in the semester that I should be able to bring my grades back up. I can redo some of the assignments for my watercolor class and there are still a few more things in my art history class that I can do to gain a few extra points. So I’m trying to just let that go for now and not worry about a B.

And I did find a really good support group online that gave me a lot of information without overwhelming me with misinformation so I feel a bit better about where I am in my treatment. Some people got their surgery, treatment, etc., right away and some, like me, waited a while.

And a very generous offer came my way today from an artist I barely know. She wants to reach out to the art community we are both a part of and find a way to raise some money to help me out with my day to day expenses as I go through treatment. Touched and humbled me in such a deep way to have someone I barely know reach out to me.

And my friends, of course, continue to embrace me and comfort me and let me know in a million ways that they are there, they love me and that I am not alone in this fight.

And my dearest Filmmaker, if you read this and/or the previous entry, know that I’m just fine with where we are. You have been so kind and so incredibly generous in so many ways and I am so grateful for that. You are very special to me, whether you want to be or not, and I know you’re there and that’s enough for me.

And thinking about the Filmmaker makes me very glad that I have someone like him to hold my hand through this. While we may not be what I’d like to be with someone eventually, he’s here and he’s sweet and he takes very good care of me.

And it makes me think about my ex. I could have never gone through this with him. He could be kind and he could be sympathetic but it never lasted. I had pneumonia at one point – double pneumonia, actually – was in the hospital for three days. When I came home, I was supposed to be on strict bed rest for three weeks so I could recover and heal. Unfortunately, I was producing a major website at that time (in the earlier days of the internet) and I had to go into work a couple of times so I could oversee this multi-million dollar launch. I even had a laptop brought into the hospital so I could check email and do some client work while I was there. Well, he thought that since I “could” work that I should be able to do housework and make dinner every night. Never mind that by the time I got home from just a couple of hours at work, I could barely make it up our stairs to our apartment and I couldn’t breathe. Never mind that I was so sick, I couldn’t stay awake for more than a few hours at a time. But during my entire recovery, he would call every day from work and ask what I was making for dinner. He never cooked that whole time, not once. And he never brought anything home. If I didn’t cook, we had to go out to eat. Because that was easy for me – go sit at a restaurant, coughing up a lung (just about literally), and then have to deal with being berated for not cooking the entire time.

Needless to say, glad I don’t have him around to see me through this.

So for today, I’ll take that I’m happy and I’m feeling good, albeit very, very tired. I’ll be glad that I got some painting done tonight on my painting class homework and the painting is coming together beautifully. I’ll be thankful for the wonderful people in my life who continue to support me, love me and surprise me.

Not sure what tomorrow brings but I’ll deal with that tomorrow.

Anger, denial, blah, blah, blah...

I was having a good day.

The Filmmaker’s daughter, who is an art student of mine (that’s how we met) finished an absolutely beautiful painting she’s been working on. She was so happy with it, as was he and his son, as was I. Always makes me feel so accomplished and like I’m a rock star teacher when one of my kids – especially one of my favorite, most talented kids – does something awesome. And, of course, I got to spend a teeny, tiny bit of time with the Filmmaker, albeit at the studio with his kids and stuff, but it always makes me happy when I see him, no matter how short the time.

I came home, settled in for an evening of painting and catching up on stuff. I signed into my Barnes and Noble account because there was a book on breast cancer I saw last week and wanted to order. Not a warm, fuzzy, the universe will save you so be happy you have breast cancer kind of book. An actual workbook type of book that allows you to chart your treatment, make a list of questions, gives advice on what to ask your doctor, etc. My kind of book.

As I was sorting through the search results, I ran across a book for men about how to deal with the women in their lives who have breast cancer. Not just for husbands to deal with their wives, but for men in general, whether their wife, girlfriend, lover, friend, co-worker, whoever, has cancer. A way for them to figure out how to help the women in their lives going through this. I thought, hm, interesting. I wonder if maybe that would be something to get for the Filmmaker and maybe EE, the other guy who is on my caregiver list.

Then I noticed a plethora of books for husbands on how to help their wives deal with this whole thing.

And I thought, I’m not a wife. I don’t have a husband. I don’t really have a boyfriend. I have the Filmmaker, in whatever form our relationship is in. And he’s been really great and supportive and wonderful but…

But is he someone I would buy this book for and give to because what the hell are we doing anyway…

And then it hit me.

I have breast cancer.

It does this. Sneaks up on me and bitch-slaps me in the face and cripples me.

I have breast cancer.

Really.

Seriously.

Breast cancer.

I have it.

And that was followed shortly by…

Fuck.

I have breast cancer.

And the anger started.

I survived 16 years of an abusive relationship, rebuilt my life into something I love, surrounded by things I love and a job I love.

And now.

I have breast cancer.

I wanted to throw something across the room and scream at the top of my lungs. Why?! Why?! WHY?!

So cliché. And I try to avoid being cliché but there you go. I’m a cliché.

But I refuse to watch Dr. Phil and have him ask me “how’s that workin’ for ya?” when I try to figure out why I have breast cancer.

And tonight, I am consumed by anger.

Anger over my diagnosis.

Anger over how painfully slow my treatment – or lack thereof – is moving. Things went quickly at first but now I’m in a quagmire of bureaucratic bullshit that is the medical industry and I’m still two weeks away from even beginning to find out any information whatsoever about what the fuck is going on in my body. Anger over the panic I feel when I get these aches and pains in the area where the lumps are and the feeling of helplessness when that happens because I don’t know if it’s something normal, something serious or something my imagination is putting there.

Anger over the fact that I can’t afford to fix/register/run my car and I have to count on the people around me to care for me. Anger over the fact that I can’t just hop in my car and drive to the coffee shop and sit and sulk and write and brood. That I have to impose on the Filmmaker and our fragile relationship to be there for me, count on him to be there despite our situation being “casual” and “loose”. Anger over needing to need everyone around me when I’m not good at needing anyone at all.

Anger over needing period.

Anger over being alone. Yeah, yeah, yeah, I know, lots of friends, blah, blah, blah. But basically, I’m still alone. I’m sitting at home tonight, alone, angry, wanting something, someone but having no one. Anger over being too angry to actually reach out to anyone right now because all I’m going to do is either cry or scream and I really don’t want to inflict that on anyone.

Anger over being alone. Really alone. What I want to do is to call the Filmmaker and say, come over, hold me, tell me it’ll be all right, tell me not to worry, let me cry, let me weep, and just hold me. That’s the one thing he can do that no one else can – hold me, kiss me, wrap me up in his strong, comforting arms. But I don’t/can’t/won’t because… well… because. I don’t want to force this to be anything more than it is and I’m angry because I feel like this situation is forcing me to want more from him than I wanted before. And I’m angry because there are so many reminders of him around my place already that it makes me want more, in a way that I didn’t before this diagnosis. And I’m angry because it makes me feel out of control of my feelings. I don’t want to need him, I don’t want to want him to be anything more than he is. But I’m here and I’m alone and all I can think about is how much I want him here, right now.

Anger over not being able to let myself call anyone to be here for me. Because it makes me feel weak. It makes me feel stupid. It makes me feel helpless. And, yes, I know it’s ridiculous but that’s what I feel. And I’m angry that I feel that way. Angry because my friends aren’t mind-readers and no one is going to show up at my door, tell me it’s going to be all right, etc., etc. Anger over how stupid all of this is.

Anger over the unknown. I don’t know what the hell is going on or what is going to go on or anything about anything about anything. School? I dunno. Work? Dunno. Filmmaker? Double dunno. Treatment? Really, truly, honestly dunno.

Anger over having to deal with all of this. I just don’t want to. I’ve gone through so much and I just don’t think I should have to go through any more of this. I just want the life I was building. Job I love. School I love. Learning to love someone again.

Fuck.

I have breast cancer.

And tonight, it’s pissing me off.

Blessed men

Today, I realized how blessed I am by the men in my life.

I have not had the greatest experience with men, overall, especially men I was married to. Even men who have been friends have broken my heart and left me bleeding and wounded. And professionally, well, let’s just say I’m not sorry that a few of those bridges have been burned.

I started thinking about this because, of course, I was thinking about the Filmmaker. Someone commented on here recently about “kicking him to the curb” if he doesn’t make me happy. And to be honest, it’s crossed my mind. Not because of him, but because of the clowns in my head, who have resurfaced lately, thanks to my diagnosis. It’s a weird fight-or-flight thing going on in my head. Do I want to really involve him in this whole process? Will he be there throughout, even though he did say he would? How much am I going to worry about him during this process and how much is that going to take away from my own healing?

Now, this is all me, not him. He’s been nothing but lovely and supportive and just fabulous through the beginning of this.

It’s me.

And the fucking clowns.

But in thinking about all of this and many other things, I started to look at the other men in my life. And I realized that, probably for the first time ever, there are more men in my life who are great role models for the men I’d like in my life than ever before.

I am surrounded by men who are MEN. Not boys in men’s clothing. Not children playing at being grown-up. I mean, these guys can all get down and get ridiculous and silly and playful and all of that wonderful stuff. But they’re also grown-ups and adults when they need to be.

The main thing about these men is that they aren’t afraid to say what they feel, what they think. And they’re not afraid to call me on my shit when I’m being dumb. Yet they never make me feel devalued. They never make me feel like I’m “wrong”. And, in turn, it makes me not assign blame and just listen.

Several of these men are men I have worked with professionally. We’ve had our battles, we’ve had our arguments. We’ve gone ‘round and ‘round on things. And every time I’ve gone through something with these men, I always expect them to end up cutting me down and cutting me out.

But they haven’t. We’ve argued, we’ve fought, we’ve talked, we’ve hugged. And we’re still here. And we still love each other. And respect each other.

That was a huge lesson – that I can fight with someone and disagree and they can fight with me and disagree with me, yet we can all end up with a satisfactory solution, all end up friends, and leave all of that behind.

What?! How is that possible? I’ve been taught my whole life that I’m wrong and that I shouldn’t argue and that I should just shut up and sit in the corner.

But I am eternally grateful to KSL and Actor Guy, in particular, for teaching me this valuable lesson. These guys are friends, are colleagues and are amazing.

And, of course, the Filmmaker. Every time a situation starts to feel terrifyingly familiar – where I’m absolutely convinced he’s going to turn into CB and the Poet (and others) and just vanish from my life – he does an amazing thing - he doesn’t. He does very simple things – calls, texts, reaches out in some way – and I sometimes don’t know what to do with that. I’m ready for it to be over, prepare myself to never hear from him again, decide that I’m better off without him, dammit, if that’s how he’s going to behave (of course, all lead by clowns in cheerleading outfits, chanting, “Yay! He’s gone! We drove him away!”).

And then he calls. And actually apologizes.

What?!

What the fuck do I do with that? No piece of my heart has ever apologized… because they sneaked away in the night, never to return.

And he’s not.

I’m confused.

The clowns are freaked out. They are whispering in the corner right now, trying to come up with a game plan, trying to figure out how to undermine this.

But since it’s never happened before, they’re running out of ammunition.

Because he simply isn’t leaving.

I’m not saying he’s going to be here forever and that we’ll get married and have babies and live in a beach house with puppies and rainbows and shit.

Cuz we’re not.

And, yes, eventually, I’m sure he’ll leave. But I’m growing more and more confident that he won’t simply vanish into the night without a word. I think that when he’s ready to leave – or when I’m ready to leave – we will be grown-ups and try not break each other any more than necessary.

And I know this probably sounds ridiculous but, for me, this is the hardest part about being close to a man, whether as a lover or as a friend. And I’m not sure where it comes from. I always felt loved by my father and never felt that he abandoned me or anything so obvious as that. My brother and I have no relationship whatsoever but it’s been that way my whole life. So that’s a piece of the puzzle I need to look at, where this fear of abandonment comes from.

Mind you, the guys who sneaked away in the night didn’t help the cause.

But every time the Filmmaker doesn’t leave, every time a male friend doesn’t vanish, every time these men show me they care in a million tiny, little, simple, easy ways, they knock a clown down and help me grow less and less afraid of letting them in and more and more confident that I can trust them with pieces of my heart without fearing that those pieces are going to be scattered to the wind.

So, for tonight, I want to thank the blesséd men in my life for being here and staying here. KSL, EE, BW, and, of course, MG. And I’m sure there are a few others that I have forgotten to include. You guys rock my small self-centered world. Thank you for being men, boys. I love you much.

More of me...

Because you can't get enough of me, I decided to do a video blog about my journey through breast cancer treatment. I will continue with this blog but check out my video blog.