Comfort In God

The title Comfort in God sounds very traditional, but for me God, or my Higher Power, is not traditional at all. I don't believe in a  God who does things, creates miracles, gives us lessons, saves people, takes people; a seemingly very popular view of God out in the world.

After I found out that I needed to go back for 6 more chemotherapy sessions,  I spent much of the night crying. I just felt so sad about losing yet another 6 weeks of my life to exhaustion.  I had so wanted to be done with all of this and I was afraid the chemo would go on and on and on.

But then I received an email from my friend Emmy talking about those spiritual things.  The message was good. But it was really, really good in that it reminded me of my favorite spiritual writer, Etty Hillesum. Etty was a young Jewish woman in the Netherlands during WWII. She was part of the intelligentsia, privileged, self absorbed. And she kept a journal.  In the midst of writing that journal, she took on the task of praying.  And that praying changed her.

She found comfort, she found truth about others, she found greater compassion.  One of her main tenets in her belief in God was that God is inside all of us (very Quaker) and that God doesn't do things, change things, intervene. God is here to comfort.  Many clerics in the world, I've found, also hold this theology but I rarely hear it spoken in sermons. I wish they would talk about it more often.

I'll never forget the Sunday a guest priest spoke at my church, just after my mother died.  He worked at Walter Reed Hospital, the hospital that helps the war wounded heal and return to society.  He was there to minister to these men and boys.  In the sermon that morning he talked about how often a soldier who saw his buddy die in the same conflict that injured him as well, felt survival guilt. The soldier would say, "God must have saved me for a reason." The priest would pause, and then reply, "That would be a cruel god who would take one man and save another for a reason, leaving family, loved ones and you in indescribable pain. God is here to comfort us. Not to choose who dies."  Hearing this theology spoken openly in a sermon was a moving moment for me, as I struggled with the sudden death of my mother and best friend.

This theology has comforted me and helped me feel safe to turn to my God for comfort -- I never trusted a God who would blithely send horrific lessons or cruelly choose to take my loved ones away. This comfort got me through my Mom's death in 2008, my friend Joe's suicide in 2009, my sister Melissa's death in February 2011, and only two months later, my good friend Thann's cancer death in May 2011.
And it helped me fend off comments from folks who meant well, but would say, "God had a reason to take your mom."  I would politely reply, "I don't believe God takes people."

This has not been a good period of time for me and I need all the comfort I can get.  Reading Etty Hillesum's writings has meant I was able to once again squash the idea of a cruel, lesson-teaching God and reacquaint myself with a God who comes in comfort.  So thank you, Emmy, for reminding me to go back and read Etty. The passage below never fails to do the trick. If Etty Hillesum can find God's comfort in the midst of massive human suffering, cruelty and pain, I can feel safe to find comfort in my God in the midst of my own suffering, fear and pain.

Now I hope my God of comfort will get me through the treatment, no matter how long it takes, and hopefully the long-term survival of Stage IV breast cancer.  The results of  the CT scan this week were actually very good, with statements like "IMPRESSIONS: Marked decrease in metastatic disease within the liver, with the liver now appearing smaller and micronodular secondary to treatment."  So I can be sad about more chemo, and at the same time be grateful for my marked improvement.  And I can find comfort in my loved ones and my comforting God.

Etty Hillesum's writing:

Sunday morning prayer. "Dear God, these are anxious times. Tonight for the first time I lay in the dark with burning eyes as scene after scene of human suffering passed before me. I shall promise You one thing, God, just one very small thing. I shall never burden my today with cares about my tomorrow, although that takes some practice. Each day is sufficient unto itself. I shall try to help You, God, to stop my strength ebbing away, though I cannot vouch for it in advance. But one thing is becoming increasingly clear to me: that You cannot help us, that we must help You to help ourselves. And that is all we can manage these days and also all that really matters: that we safeguard that little piece of You, God, in ourselves. And perhaps in others as well. Alas, there doesn't seem to be much You Yourself can do about our circumstances, about our lives. Neither do I hold you responsible. You cannot help us, but we must help You and defend Your dwelling place inside us to the last. There are, it is true, some who, even at this last stage, are putting their vacuum cleaners and silver forks and spoons in safekeeping instead of guarding You, dear God. And there are those who want to put their bodies in safekeeping but who are nothing more now than a shelter for a thousand fears and bitter feelings. And they say, 'I shan't let them get me into their clutches.' But they forget that no one is in their clutches who is in Your arms. I am beginning to feel a little more peaceful, God, thanks to this conversation with You. I shall have many more conversations with You. You are sure to go through lean times with me now and then, when my faith weakens a little, but believe me, I always labor for You and remain faithful to You and I shall never drive You from my presence.

(From Etty Hillesum: An Interrupted Life and Letters from Westerbork, Henry Holt and Company, Inc, 1996, p 178.)

Also published on CureToday

Fuck

I'm a big girl. I can say that word.

I just spoke to my oncologist. The CT scan shows that there are still masses on my liver. They're smaller, but they're still there.  The largest mass has gone down from 3.6 cm to 1.6 cm.  That's a good thing. But what this means is that I need more chemo.  Six more at this point. A month and a half.  A month and a half of more exhaustion, of more time on that goddamn steroid, of living a life limited to my couch and my bed.

I know I should feel grateful that the cancer has responded so well to the chemo. I am grateful for that. But really my first response was to cry. I am tired of living this limited life. What can I do though at this point except go for more chemo. It's that or die.  Okay, I'll stop being so whiny now, or at least whining online.  I think I'll go home and whine instead. Care to join me?

What's In a Scan?

Well, in my case, my life. Or the answer to the question, do I get to live?

Now that I'm coming to the end of my chemo (hopefully), I'm starting back into scans (bone, CT, and breast MRI).  All are meant to answer the long-awaited question of how far has the cancer been kicked back.

The breast ultrasound yesterday showed a significant decrease in size of the breast tumor by perhaps up to two-third. The tumor is still too close to the pectoral wall, so the breast MRI will give us more info about that.  However, my breast surgeon (God love her) remarked that the MRI might even show that some of what looks like tumor on the ultrasound is now scar tissue.  Yeah, scar tissue. Root for that.

The CT and bone scan will tell us if the cancer is in the bone (it wasn't before, so let's keep it that way) and if it's still on the liver.  I'm shooting for nothing on the liver. Why? Because that means chemo is over and I can go straight to bilateral mastectomy and then on to maintenance doses of Herceptin. In other words, I'd get my life back.

And moving on with my life sounds pretty darn good to me right now.  I like my bed and my couch, but they've gotten a bit too familiar. And the only command my dogs seem to follow nowadays is "sleep."  I bet they're getting tired of that too.

Check back for more news. And let's all hope and knock on wood that it's good. I could use some good news about now. And the dogs would like to relearn certain commands like "walk".

Dragging Ass

You can't get more basic than that. That's what I'm doing. Dragging ass.  Chemo has taken everything out of me and my life now consists of sleeping, getting to work 2 days a week, receiving chemo, and then more sleeping.  The good news is that I have only 2 chemo sessions left. The bad news is that I continue to duck and dodge the bad news bearers, people who feel compelled to tell me of those who have died of cancer or will soon die of it. Do I really need to know this? No.  Even if I were to die sometime soon of this disease, I'd rather live in the hope that all will be okay, than in the surety that this son of a . . . . disease will take me down.  Let me have that illusion. We'll all be much happier for it.

I was so depressed by the bad news bearers, that I actually decided, considering how hard it's been for me to find positive stories of cancer survival, that maybe I could help myself and others by creating a small website of survival stories. Don't know if it'll help others, but it's helped me.

http://www.uppitycancerpatient.com

If anyone has more stories of survival, let me know. I'd love to add more stories.

And more in the good news department, my new CA 27.29 tumor marker number is out. It's now 86.5.

The reference range for this tumor marker is 0.0 to 38.6.  My number started at 565.6, meaning there's been an 85% drop in the tumor marker. The hope is that this, like my liver numbers, will drop back into the normal range, I can go on to have surgery, and then simply start maintenance drugs and be around to annoy you all for a long, long time.

Either way, I'm still dragging ass. Can't wait for chemo to be over. And when I say over, I mean, don't bring that sh*t near me, I don't want to wear a wig ever again.  All you bad news bearers, step down.