Parents, and Transplants, and Lessons -- Oh My!

Hi folks. Apologies for the temporary disruption of your glimpse into my thoughts – mom was in town, and I simply didn’t want to carve out an hour to spend without being with her. Therefore, I bring you – THE EPIC CONTINUATION OF MOLLY’S LIFE.

I will start with the medical miasma, and conclude with the familial one. Enjoy.

On Friday, my mom and I went back down to Stanford, the place where, if I were to chose to have a bone marrow transplant, I would be hospitalized for a month, and then remain in close driving distance for about 6 additional months. This option would require a 24/7 caregiver, or caregivers, for the first month after I’m released from the hospital, and pretty close contact with someone or ones thereafter.

This option also has about a 60% success rate – meaning, “long term survival” – with a match who is a sibling, and we found out on Friday that my brother is indeed a match (Yay). Of that 60%, 20 – 30% of people will get a recurrence of Leukemia anyway.

My other option is to go “straight chemo,” which means the 5 total rounds (of which I’ve already completed 2), and then... Pray. If the Leukemia does not recur within 2 years, chances are that it won’t. 40% of these people have a long term survival rate.

Some of the doctors, and many of the nurses, say that going the transplant route after first remission (which I’m in – Yay…) is preferable to waiting to see if there is a relapse, and then doing transplant. Some of the doctors say that it’s okay to do the chemo, and see what happens, with transplant as the option if it does recur.

I’ve done a lot of writing, listening, reading, praying, talking, and meditating on this decision. Still, I do not have to make it today, but … mostly, I’ve already made it.

Unless evidence presents itself to make me change my mind, I’ve chosen to go consolidated chemo, and “wait and see” what happens. I have felt this to be the right option for me for a long time, and I’ve become more firm within myself about it.

And here’s some of the “life lessons” that are coming from this decision. The reality is that I have no idea what’s going to happen. I simply have a feeling. I have a feeling, an intuition that this is the right course for me.

For those of you who have read me long enough, you know that my convictions are rarely firm. They wane. They waffle. Is it? Will it? Forget it. Here, with cancer, I’m being given the opportunity to make a choice, and then follow it through with every ounce of my belief and my action. It will not be enough to simply say, Go chemo!, and then go back to sedentarianism. (Yes, that is a new word.) It will not be enough to simply go chemo and then hem and haw over whether I made the right choice or not.

To quote a phrase I cut out of a magazine, and stares at me over my kitchen table: Go with your gut, and then give it your all.

What would it look like to give it my all? 

What would it look like to make a decision that will have ZERO immediate confirmation, and continue with it anyway? What would it be like to have faith in myself and my decisions? What would it be like to believe in myself without outside affirmation?

Big deal. Big gamble. The biggest. Will I be able to show up for myself, and follow through with a courage of conviction – a key phrase here? Remains to be seen. But, I hope that with my life on the line, I allow it to be a big enough risk to show up for it wholly. 

And, speaking of courage, a good segue to the 2^nd half of the blog.

I was on the phone with my therapist on Thursday morning, having reemployed her for weekly phone sessions for the time being. We were talking about a conversation with my dad earlier in the week that was bothering me – we were talking about how, to me, he has not been showing up for me as I believe he should during this atrocious period of fright and uncertainty.

She said something which struck me: He is not a courageous man. 

He can be and often is a frightening man, as some cowardly people will be, but he is not a courageous man. 

People have parroted again and again that he’s scared. That he’s scared. He’s scared. He doesn’t know what to do, or how to handle this, and he’s scared.

So. 

The. 

Fuck. 

What.

I’m not? Everyone in my family isn’t? Everyone who’s showing up for me isn’t powerless over my cancer?

On that Thursday evening, I was on the phone with my dad. In fact, I was in the car with my mom, using her speaker phone to speak with him as I drove. He’d called me on my cell phone a few minutes earlier, and I texted him that I was on the phone with my doctor and would call him back. Within a few minutes, I did.

We spoke, I updated him briefly, and then he said he had to go eat dinner. I had already asked him to call me earlier in the day, as this was not the first time this had happened, and earlier is better I'd said before. I’d already asked him to call me more frequently, period, instead of a text every 4 or 5 days. I’d already told him I wanted him to be more involved – and sure enough, he did begin to call more often, but after dark.

So, on Thursday, when he said he needed to go eat dinner now, after our maybe 3 minute conversation, I repeated my request for him to call me earlier in the day. He replied, this was the time he had available. I told him that it doesn’t give us much time to talk. He replied, Well, if you’d picked up the phone when I’d called we’d have more time. (Note, again, I was on the phone with my doctor, and it was merely a few minutes later when we did talk.)

Then, he found his catch phrase, and proceeded to repeat it as I got more agitated with his refusal to budge: "This is how it works."

This is how it works.

This is how it works, Molly, if you want to speak with me, you must do it on my terms, at the times that I have available. This is how it works, Molly, that although I am newly retired and told you I’d be spending these few days doing yard work, this is the time I have available for you. This is how it works, Molly, if you want to have a relationship with me. My terms, My time. No, indeed, I have no concept that others are willing to show up when and where you ask, because you have cancer – nor that perhaps people show up for one another…. even if they don’t have cancer.

And, so, with one more, “This is how it works,” I yelled, “Fuck you! Good-bye!” into the phone and hung up.

I have been on the roller coaster of feeling and processing my emotions ever since. And, I am coming out the other side, back to the anchor and foundation of who I am.

After this conversation, I felt angry, but I also felt guilty. I felt like because I had lost my shit and yelled at my dad, I was now who I’d always been to him – the disrespectful fuck-up. I felt like I’d now, once again, given him evidence that I am the one who is wrong and who has the problem, and once again, he is the saint. He is, as he once told me when I was in college partying mode, Dudley Do-Right.

My father is as close to Dudley Do-Right as I am to Snookie. But a rail against him isn’t really what I want to write here – that writing belongs and is in a very private notebook. ;)

What I do want to express is how that feeling of myself as the fuck-up, as the one who needs to apologize to the man on the mountain-top changed. I went to go meet up with some folks for an hour after my mom and I got out of the car, and I got to share about some of my indignation, that I was flabbergasted, hurt, and supremely disappointed once again. Later, I listened to a meditation tape before I went to bed, after telling my fuming mother that I couldn’t talk about it any more – that harboring this anger in my body is just fuel for cancer. Which isn’t to say I wasn't, or still am not angry – I just had to stop stoking the flames for a little while.

In the end, before I fell asleep, I remembered something: I. Am. Awesome.

I’d forgotten. I’d forgotten that I am a writer whose writing affects people. I’d forgotten that I am a friend who is kind, considerate, and more than a bit kooky. I’d forgotten that I am a brave motherfucker, reading poetry onstage in a nude suit, and reading poetry that would make your grandmother blush so hard she’d sweat. I'd forgotten that I once auditioned with the song "Make em Laugh" and bombed so hard it was hilarious.

I’d forgotten that I am going through the fight of my life with significant amounts of grace, candor, honesty, and humanity. I’d forgotten, ultimately, that I am awesome.

How my father chooses to be in my life has no bearing on my self-esteem. Or, it shouldn’t. For a few hours, it did – very much so. For a few hours, I was deflated and defeated and small. But … That’s. Not. Who. I. Am.

I am much more than any of that, and I finally remembered.

Is it still sad? Yes. Disappointing? Yes. Hurtful, even? Why, yes. I am, after all, human. But am I gaining freedom from the mantle of “the bad one”? You bet.

What I am getting to see is that, for the very first time ever, I have asked my dad to show up for me emotionally. This has not been a veiled or manipulative ask; this has not been subtle. I have finally believed that my needs are important enough to voice them, and I have finally asked him of all people if he could show up and meet them.

And he has told me that he can’t. Finally and clearly, I have asked for what I’ve needed from him, and he has told me no. – There is a freedom in this.

There is no more questioning or wondering if my dad will finally be able to be the dad I want him to be. If he cannot show up for cancer, then he cannot show up for all the other lesser events. And I can finally let him off the hook. I can finally stop demanding that he be the person I want him to be.

Over and over, I have gone to the dry emotional well that is my father, and I have hoped again and again that he would provide. Over and over, I have been disappointed and hurt because he could not.

I am finally seeing that I no longer need to go to that well. I no longer need to hold out hope that maybe, just maybe he’ll surprise me this time. Because, again, if he cannot show up during a time when I need him the most, more than I ever have, he will never show up for the times that I need him less.

The beauty of this, is that I’m getting to pull my head out of this cavernous echoing well, and look around. Over and over, people have told me that they want to help, they want to be here for me. What can I do to help? I have full, functioning, abundant wells as far as my eyes can see, and… finally, I’m seeing them.

I don’t know what will happen here with my dad. I have some writing to do, and discussion with a friend I trust to have before I do anything. But, too, I’ve realized that if my dad were just another person in my life? Well, I’ve had experience dealing with bullies before. I’ve had experience making boundaries with people who are inappropriate or hurtful. If I can hold my dad to not be “DAD” with all its attendant expectations and fictional-world perfection, but rather simply as another human being in my life, then I have a better chance of working this one out. This is not about a father and daughter. This is about a person asking for help, another person not being able to give it. This is about a small, emotionally crippled man no longer being asked to do things that an able bodied person can do.

Ultimately, it’s about individuation, and the reminder, once again, that I am awesome, no matter what.

And it is this “No Matter What,” this conviction that I am worthy, that will allow whatever medical decision I make to be the right one. I will live because I want to and nobody can talk me down from that.