really good news

Dear, dear friends, who have walked with me along this strange road, I have waited until today to post. Today Mary, my brain doctor’s nurse, called to tell me that the MRI I had yesterday was clear. Clean. I don’t have to be re-checked until December.

Meanwhile, I have been drinking in the days post-Kadcyla. I had almost forgotten what it felt like to be chemo-free. Every day I feel a little better, a little more energy and alive. I don’t take naps anymore. I still get Herceptin every 3 weeks, but that is not a big deal. My cancer markers are staying down in the normal range and nobody is pushing me to go back onto the Kadcyla.

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With the hip replacement, I know that I will never be a walker. I can walk short distances no problem, but I don’t want to walk the length of the mall. I am compensating with swimming. I spend an hour a day in the water and feel really good. I can feel myself getting stronger, having more air.

I think it is time for this blog to end. I’m keeping track of other things on my new blog – for photos and musings and the like, at SHOOFOONEWS.

This morning I woke up with the strong sense that we are a people given the gift of each other just so that we can make it down the road. This could very well be Holy Spirit. I love all of you. Thank you for being you, and for being with me.


in-between time

I’m still flushed (and hyped and tired at the same time) from the chemo/steroid on Monday, but hoping that this was my last treatment of Kadcyla, and from here on out every day will get better. I’ll see the doctor next week for the final word. I’m looking forward to a chemo holiday. Who knows, my own immune system may kick back in and I’ll be “cured”. How will I know if I don’t try? With my blood numbers and scans looking good, it doesn’t make sense to me to continue to pour poison in every 3 weeks.

This is a strange disease. Three years ago, when I was being rushed into surgery for removal of a golf ball sized brain tumor, I never imagined that I would live 3 more years. Now I’m beginning to understand that questions of time are fundamentally unknown to me and I should not be bothered with the questions or prognoses. I’m definitely a quality of life over quantity of life person, but even that seems to be the wrong way of looking at it.

Whenever I try to name the experience of living my dying, I get caught in a linear trap. As if this comes after that – or that comes after this. And that is not the way it is.

Living-dying feels like a chiseling. Fine tuning. Becoming. Walking down the aisle to be wed – an in-between experience which is in and of itself as significant as what is before and what comes after.

I’ve been a shy person most of my life, never knowing who I was or what I was to be. As if these things could be figured out, planned. Now I realize that my life is a believing, a following, a trusting. I’m getting used to this in-between place, and perhaps beginning to own my life for the first time.

We have to trust that our stories deserve to be told.

“We have to trust that our stories deserve to be told”.

This is what I read from Henri Nouwen today. This is what propels me to continue to write, despite self consciousness or notions that I will become lost down my own narcissistic melee.

I read others’ blogs about metastatic breast cancer. They seem hopeful and more focused than my own writing, which is more often mired in confusion. I’m scrambling about, my relationships are messy, my thoughts disjointed and all over the place. I have no plan for how to handle this disease other than just face it, one day at a time. Walk with it.

More than anything else, now, my body is tired. No energy. Running out of gas. This must be what it’s like to be 90 years old. Failing. But my blood tests look good, they tell me. I look good, they tell me. Do they know what a struggle I have just to get out of bed in the morning? Still exhausted after spending the whole night in bed.

I use my bed as a place of refuge. I feel safe there, even if I’m not sleeping. (I do make my bed every morning and only rest on the top of it during the day.) I know how to meditate / pray, using my breath as a way of wordless dialogue with “out there” / Other. This has become a major cornerstone of my way of coping. A place where I can just be, letting things be as they are. An active practice of being utterly passive.

I can watch the neurotic patterns that enter my thoughts: my worries and confusions. I learn to let these fall into the background (they always want to take to the forefront of the center stage). I use my mantra-word to pull my focus back to the dialogue. The present. The now. That fine edge of me & Out-There.

It is a place where I am fed. Like nursing on the Great Mother Earth, those grand and mysterious universal energies that surround and sustain and are us. Or simply Shavasana.

Sometimes I let myself wonder about death. Am I practicing? Am I dying?

I think that dying is ok. Necessary. Good, even. But there seems to me something that is being worked out in me, in my life, that is necessary as well. Something that calls for personal courage and assent. A let it be done to me. A yes, ok. It’s not a battle, but a risk.  A trust.

For now, I am determined to be as healthy as I can in my body. To move, to eat right. To not succumb to whatever it is that is coaxing me from around my edges. A darkness. The shadow of Death.

I read about the man who spent the last 30 years of his life, alone in the wilderness of Alaska. I could do that too. I am inspired by his living his dream. I want to do that too.

Death is not leaving life. Death is entering more fully into life.

I look forward to getting past that last chemo and onto restoring my body. Eating vegetables and fruits. Exercising (or, at least, moving). Not being tired.

Note: This is the full Henri Nouwen quote:

“One of the arguments we often use for not writing is this: “I have nothing original to say. Whatever I might say, someone else has already said it, and better than I will ever be able to.” This, however, is not a good argument for not writing. Each human person is unique and original, and nobody has lived what we have lived. Furthermore, what we have lived, we have lived not just for ourselves but for others as well. Writing can be a very creative and invigorating way to make our lives available to ourselves and to others.

“We have to trust that our stories deserve to be told. We may discover that the better we tell our stories the better we will want to live them.” – Henri Nouwen

one more to go (Kadcyla)

I went in to my chemo yesterday, complaining that I was going to run away. The physician aide said that once when Dr. McKeen’s patient refused to come in, she sent the police after her. (Wouldn’t be my first time being hauled off by the police.)

That must have been why Dr. McKeen called this morning saying that if I do one more treatment, that will be 6 months that I’ve been on Kadcyla, and if my markers are still down and my scans continue to look good, I can go back to a Herceptin-only treatment plan. I can always go back to the Kadcyla if/when my body shows progression.

Whew. Balancing powerful drugs with a quality of life is tricky. But this makes sense to me. I’m not a “poison me until you cure me” kind of person. I know that my disease cannot be cured, and when everything looks good, I want to grab it and run with it. It seems to me that my body is crying for a break now, a chance to heal from the drug treatment!

So … I’m planning my getaway! For now we are planning to head to NYC/Ct area to visit family, head up to the Maine coast and Acadia National Park, Quebec City for something different and a recommended French restaurant, and then down the western NY State to visit more family.

I’m tired of being sick and tired!

the sacred space of alone-ness

A few days ago I wrote that I felt alone – “Like I have to go it alone, carry this load by myself. Be brave. Be strong. … ”

The response was a windfall of support, friendship, flowers, emails, phone calls, text messages, art. It is clear that there is no lack of supportive and loving friends in my life, no matter how lousy I feel or how grumpy I am. Then Janine said: “About the “alone” feeling. I think this is a characteristic of carrying one’s cross. … They are going to be different for all of us, but I do believe that is something to recognize.”

And it clicked. I got it.

I AM alone.

I feel alone in my struggle so I reach out to others, and they are all there. But I am beginning to see that my alone-ness is the alone-ness of each of us. We can share this with each other, support each other and love each other, but we cannot cross over to carry another’s cross.

We each are alone with our own life and death.

This is the sacred space.

There is no need to panic. Rather I can go to this sacred space within. This place of solitude and silence (of darkness and unknowing), and I can trust it.

The invitation is there. Meet with my own alone-ness. Engage at that place in myself that is most vulnerable, desolate and alone. Sit there.

This is the wellspring within that protects and guides, swaddles and carries, feeds and sustains.

[Fully realizing that this may make no sense at all to anyone else. Especially since I am reluctant to use the word “God”.]

Port Replacement

My port replacement surgery is done. There were a lot of needles and poking and waiting, but I’d rate it at about a “3” in level of discomfort/hassle for medical procedures. I’ve had experiences in the dentist chair that I would rate higher.

The new port – a “vas cath” – was implanted in the same “pocket” as the old one, simplifying the procedure. I was given Versed, a conscious sedation, and though I was making efforts at being aware now I find that when I try to recall what happened my memory is vague. I think I talked to the doctor about Kentucky and bourbon while he was working on me, and that seems weird to me. (I rarely talk about bourbon. The doctor must have asked me where I was from and that led to the bourbon.) Then again, maybe I dreamed it all.

I like Jupiter Medical Center. It is a small, local hospital and after so many years of being in and out for one reason or another, I find that I know a lot of the people. The nurse who draws blood, “Angel”, has been there for more than 30 years. Angel has pictures of herself and Perry Como. She says that he sang for her. She is always good for gossip about Burt Reynolds, who is also a local regular at the hospital. (“He’s getting awfully skinny.”) Burt calls Angel, “Angel Face”.

And the radiologist, Doctor Fox, who replaced my port, is the same doctor who put it in 4 years ago. There is comfort in this familiarity.

I’m a little swollen now but not in too much pain. The biggest risk is infection in the blood because a foreign device is introduced directly into the blood stream. They take a lot of precautions to make sure everything is sterile. A lead from the port chamber threads up around my clavicle bone and directly into my jugular vein. (You can read more about it here.) Surprisingly, I don’t even have a bandage. The opening was stitched on the inside and the outside skin glued shut. Some strange blue stuff was wiped over the whole area.

Basically, it is not a big deal, and I’m feeling more ok now.

My rant was helpful, though. I got such an outpouring of love and care from friends, as well as the reassurance that it’s ok to not be ok. It’s not quite like having a mother and father, but a very good substitute. I realize that it is not always easy for me to let myself rest in the arms, care, and love of others. The ability to be dependent and part of a web/community of love. To trust that arms will catch me and carry me. I tend to want to go it alone (or think that I have to). I suppose it is the disappointments that leave me with these insecurities.

I am grateful to all of you. Love.

(P.S. Brain MRI on Thursday, so hang on. Results will indicate the effectiveness of the Kadcyla in crossing the Blood Brain Barrier.)

Artwork from Felicia: