What a week!

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What is needed right here is a big eyes-crossed emoticon. But I’m too tired to find one, so you will have to make it up in your head.

This has been one crazy week.

On the bad side, my neck/shoulder pain has continued. I finally was able to figure out that it happens whenever pressure is put anywhere in the neck/shoulder/back/front region, on either side, although the pain is only on my left side. You can pretty quickly deduce that this is a condition that does not allow much rest. Just leaning back on the couch triggers it, and lying down in any way or shape, on either side, or front of back, triggers it. If I find a position that puts less pressure in these areas, it seems to involve odd neck positions, and that triggers it too.

So here is what that has looked like. At night I go to sleep and within a few hours the pain has reached the point where I have to get out of bed. I may not necessarily wake up for this. One night I found myself sitting in the kitchen chair with no memory of how I got there. Other times I wake up for the initial leave of the bed, but wherever I wander, I keep dozing off, as in my head flops over, I walk a little unsteadily, shall we say. Sometimes I catch myself starting to fall off, whether I am standing or sitting. One of the things that helps the pain is standing in the shower, so I have done that a couple of times. Last night I kept catching myself falling asleep standing in the shower. With just a few hours of sleep at night, I have been exhausted in the daytime as well. With only one exception, I haven’t been able to take a nap because as soon as I lay down it starts hurting and I get up again.

Needless to say, I have not been very productive this week, with two exceptions. The first is that on Friday I actually made it to a coffee shop after radiation and wrote for awhile. This was not due to planning and discipline, but to a stroke of inspiration I had on the way to radiation. The last chapter of my book started falling into my lap, and I knew if I didn’t get it down I’d lose the heart of it. I wrote on my iPad rather than my laptop, since I had not planned for this, so it was awkward, and I didn’t complete the chapter. I need to work on it some more, but I have allowed myself to put it off a few days because I know I am so tired I could not do it justice. But I was happy to at least make a start on this promise to myself.

This week I also hosted my first dōTERRA online class. It is a week-long class with ten participants, and I have to say, it has been a lot of work, and I have been a little dazed and confused for part of it, but it has actually been fun. I have made some really fun mistakes, like the time that my computer continued broadcasting live for quite awhile after I thought it had been turned off. I still have not watched it to see just how badly I embarrassed myself, but I know I whipped my wig off and sat down at the computer, and that I caught on video my comment that I had just slathered myself in marijuana, referring to the anti-inflammatory cream I have with cannabis trichomes, which I used to try to stop the pain. Not available through dōTERRA, by the way! Didn’t work either, just as the oils I did try did not work, and the Motrin does not work, and the muscle relaxants prescribed by the doctor on Friday did not work. Well, the muscle relaxants enabled me to get a few hours more sleep than I have been, but they did not prevent me from waking up in pain.

Nevertheless, I have discovered that what those dōTERRA people say is true: I actually do love this stuff, and I do love sharing about it. And I do love the people I have been sharing with. Some I know, some I know only from Facebook, others I don’t really know at all. When I set up the class, I said I had room for ten people to participate, and these ten people asked to be included. They actually all seem to have been showing up for the classes, whether live or the recorded version available later. They have been wonderful and supportive and kind. They have told me I am beautiful, even though I can see the video broadcast of myself and I am horrified! They have told me that I am doing a great job, even though I find myself reading from a paper and still stumbling over the words, whether from exhaustion or natural lack of talent. But I have really appreciated their kindness. Really.

Other bad things have been happening in my body recently as well. Whether they are related to my pain I don’t know. But I have been puffy, like steroid puffy, even though I am no longer on steroids. My fingers have been swollen, and so have my feet and ankles. The neuropathy left from chemotherapy has been more pronounced. Here is where the dōTERRA did supply some relief from discomfort, as the area around my toes was numb and inflamed, and a good application of helichrysum and frankincense in fractionated coconut oil made them feel much better. The general inflammation, however, has been pronounced, and could well have something to do with the pain I have been experiencing.

I need a deeper change, however, and I know that. I have been eating terribly. I have been eating very unhealthy food in unhealthy amounts, and I feel awful. I know that I also need to take control of my diet and my life because of this disease. It seems as though every week I run into someone whose cancer had beat cancer once only to have it return a few years later. That second visit is generally a lot harder than the first. Often, in fact, it is fatal.

So I am back to my vegan diet, and I will let you know how that goes.

Spiritually it has been an interesting week as well. While I was experiencing discomfort during one of my radiation treatments, I closed my eyes and tried to go to that place where I danced with Jesus on the water. (For those who are new, this is an image my pastor gave me when I was first diagnosed, of Jesus reaching out to Peter and inviting him to walk on the water with him. I have visualized that during some of my more difficult times, only rather than walking I found myself dancing on the sparkling Sea of Galilee.) Only when I tried this time I couldn’t do it. I couldn’t get out of the boat, because I knew I would sink, because I knew I didn’t have the faith that would allow me to walk. So I sat in the boat, and Jesus came and sat right outside of it, both our arms resting on the side, and we talked. “Well, you can’t really blame me, can you?” I asked. I’m not sharing them again here, but I have my questions and Jesus knows what they are. I remember some years ago when I brought them up (again) to one of my pastors, he said,
“Sharon, do we have to dance this dance again?” And I guess we do. I am locked into it, seemingly for a lifetime. I spin and spin and become dizzy, and can no longer tell which way is home.

I have given God ways to free me from it so I can rest in his arms forever. “God, please just let me have one full night of pain-free sleep.” Such an easy thing for the creator of the universe, yes? No, I guess not. It probably wouldn’t work anyway. I would probably just say, well, I got better. It was time, and my body healed my injury. Why would God give me a chance to fail and go back on my word again? But okay, this hurts and I’m tired.

I do see another doctor on Monday. My radiation oncologist prescribed the muscle relaxer I started taking last night. So by process of elimination, by Monday we will be able to say say it’s not that, and move on, and hopefully find what it is and what needs to be done. Unless God or my body chooses to heal it first. Either way is fine. The faster way is better, whatever that is.

So that’s what’s up right now. Thank you all for your support! Love to all of you!

Radiation therapy is NOT fun

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I can’t believe I have completed six days of radiation therapy already. That means only 19 days to go. Last treatment is scheduled for September 12th. And I have done nothing that I wanted to do, like take my laptop and go to a coffee shop to write for awhile after therapy. There have been a lot of busy days, a lot of disorganized days, and a number of painful days, but one way or another it just hasn’t happened yet.

But I want to whine a little, even though I know I have no real grounds for whining. Radiation therapy is nowhere near as enjoyable as chemotherapy was. Now I know chemo can be hell for a lot of people, but it wasn’t for me. It was somewhere I went once a week to spend a few hours in a recliner reading, writing, chatting, while being taken care of by the nicest nurses. In contrast, radiation therapy is a rapidly moving assembly line. First, it is every single day. Each session lasts from 15 to 45 minutes depending on whether or not they want ex-rays (which they seem to have wanted more often than not). I not only don’t get a comfortable recliner, I get squished into a cardboard-like mold to hold me still in the most uncomfortable of positions. And I’m not allowed to move. If I wiggle my toes a voice comes through the speaker telling me to keep my foot still.

Note that part about the voice through the speaker. There are two techs who take care of me every day, but that consists of asking my birth date, then tugging me into position on the table while speaking to each other in numbers. “98.” “73.” My primary relationship in this therapy is with a large machine that rotates around me while I lie on a table.

Once I am squished into that position, suddenly I itch in all sorts of places. My wedding ring feels like it has slipped too far down on my finger and really needs to be moved NOW. I suddenly realized that my muscles had been tense, which had lifted my back slightly off the table when they positioned me, and now it really wants to relax. Then even though it’s an open machine, as the larger part revolves to where it is above me, there is a moment of claustrophobic panic. But most of all, it’s uncomfortable. Even though they presumably made this mold around my body the first time I went in, there are ridges where ridges should not be, and there are parts that were just never comfortable to begin with.

Perhaps coincidentally, I developed a pain in my left neck and shoulder around the fourth day of therapy. I will admit I don’t have a high tolerance for pain in the first place, but this is a very painful pain. Occasionally it has been painful enough that it has made me want to vomit. During the day it is somewhat relieved, and even occasionally subsides completely, with large doses of Motrin. But at night it always becomes severe, and is not relieved however much Motrin I take. I haven’t had a full night’s sleep for five days and it has gotten to the point where I am actually afraid to try to sleep, because I don’t want to wake up in pain.

Not due to the radiation, the techs told me. The area of pain is immediately above the area they irradiate but not within the field. But they suggested I tell the doctor when I see him on Friday anyway, which I will. It could be due to spending large amounts of time in unnatural and uncomfortable positions, they said. So maybe I can blame radiation. But on the other hand, it could also be from picking up my grandson wrong, or from sleeping in a strange position. Goodness knows I have tried to figure out how to improve my sleeping position, but that has been difficult considering the fact that moving even a fraction of an inch causes great, shooting pain. I have kind of self diagnosed it as maybe a pinched nerve in my neck, although the muscles were quite tender when my daughter tried to massage the area, and I’m not sure if that would happen with a pinched nerve. But whatever it is, it hurts, and I am tired of it, and when I lie there in those odd positions for radiation, my shoulder starts to hurt and I think, oh no, this is making it worse, but there is nothing I can do about it.

Then, too, I have thought about pain itself. I have thought about those I know who have died of cancer, who have reached excruciating levels of pain in the process of dying. And I think, I can’t even tolerate a little shoulder and neck pain.

So far I have been just as tired from radiation as from chemotherapy, even before the pain in my shoulder started robbing me of my sleep at night. I was taking three or four naps a day before I started being afraid to lie down.

But it’s just a really impersonal treatment. It’s annoying, uncomfortable, and lonely.

I guess it’s going to be up to me to transform the experience. Twenty percent of the treatments are finished now. I hope I don’t waste the rest of this time.

Facing into the dark

In nine days I will have finished chemotherapy. It has not been nearly what I’d feared it would be. The side effects were subtle. The nausea was fairly easily controlled with medication. I got one mouth sore, and my fingertips cracked and peeled. I have a tiny bit of nerve damage in three fingertips on one hand. I had a lot of weariness, and a huge amount of paranoia, but I was okay. Soon I will get a vacation, and then radiation for five weeks, and then reconstruction.

I know a number of people with cancer, however, and for many of them, treatment for the disease has itself been a trip through hell. I know people who have been on the same drugs I have been on who were unable to continue them because the side effects were so severe: muscle aches, fevers, inability to even get out of bed, bleeding. A friend’s nephew experienced severe mouth sores and numerous apparent brain bleeds (small strokes they think) that had him living in another world, and had those who loved him thinking he might be preparing to leave this one. I have known of people whose bones were so brittle from the treatments that sitting on them caused them to fracture. From the treatment, and from the cancer itself, there has been unremitting pain.

You call me brave? You call me a warrior? I have not been in those trenches. If I am in the war against cancer, I am one of the people sitting in the air conditioned office. I am not on those front lines.

Beyond that, however, is the deepest darkness of cancer, and that is death. This is something I have not even really considered for myself. I know I am not going to die at this time, at least not from cancer. I know that at this moment I am cancer free and I am undergoing aggressive treatment in order to try to prevent its return. I know it can return. There is a 20 to 40 percent chance of that, and if it does, it returns as metastatic breast cancer, Stage 4, considered incurable. Treatable, but incurable. I’m not sure exactly what that means, to tell you the truth. But I have a friend who had Stage 3A breast cancer, went through treatment and was in remission. Her doctors told her she would not die of breast cancer, that she would likely die of something else. But then the cancer returned, metastasized to her liver this time. She was fighting it, was receiving treatment with Taxol, the drug I am currently on. We had many conversations about breast cancer, but then I didn’t hear from her for awhile. People always seem to want to encourage me. Nobody ever wants to tell me that they are not doing well. I just read yesterday from her sister that she had been admitted to the hospital. Her sister asked for prayers for my friend’s adult children, for her husband, for her siblings. But she did not ask for prayers for my friend, which told me that she had probably gone to the hospital to die.

Another woman I know, a delightful human being, who hired me for my first job back in the work force after having been a stay at home mom for a number of years, recently lost her battle against cancer as well. She’d fought a particularly aggressive form of thyroid cancer for a couple of years, and had well outlived her original prognosis. She encouraged me in my own battle, gave me helpful hints for dealing with some side effects of treatment. She was always positive, and when asked never really said she was not doing well. Recently she’d been diagnosed with breast cancer as well and underwent a lumpectomy. That doesn’t sound like someone who was facing a terminal diagnosis for another condition, does it? Then I heard she had gone to the hospital, and then released to home. Her mother came, her sister was there, and they stayed with her all day and all night. Perhaps it could be assumed, but nobody said she was dying, and I didn’t believe it, until the message came that she was gone.

It is so difficult to grasp how people can be so alive one day, and gone so soon after. It is so difficult for the body to be here without the animating spirit, never to speak again, never to hold the ones they love again.

It also brings home to me the fact that this disease I am fighting is not a trivial matter. It is deadly. I remember feeling so blasé about it all when I was asked to return for a second mammogram and ultrasound. Oh, it’s nothing, I thought. I remember walking from my car into the clinic, through the shaded tunnel, along the sidewalk with the squiggly path paved into it, and thinking, “Oh, wait, this might be an important moment,” and being both shocked by that thought and unable to really internalize it. I think I have carried that with me through this whole thing. Deny it and it will be okay.

I finally picked up a book I’d had on my shelf since before my diagnosis: When Breath Becomes Air, by Paul Kalanithi. This is the memoir of a doctor who died of lung cancer. I hadn’t been able to read it before, because I was not willing to look into that darkness. Then for some reason I decided it was time. The darkness had touched me, in friends who had been fellow warriors in this battle dying on the field. I began to feel a need to look into that place, to assess whether I would have the courage to face it if that time came.

Kalanithi was a neurologist, who had a fascination with the juxtaposition of the physical and the spiritual. He wanted in particular to understand death. He had obtained a masters degree in English literature from Stanford University. For his thesis he wrote about Walt Whitman’s quest to understand “the physiological-spiritual man.” He found no answers there, however, and decided to go to medical school. “It would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the questions of what makes human life meaningful, even in the face of death and decay.” To this end, he chose the field of neurology. He witnessed much, but if he came up with “the” answers, I didn’t grasp them from this book. He knows now, of course. But he can no longer tell us.

What he did convey was how we might live life in the face of our dying. “Grand illnesses are supposed to be life-clarifying,” he wrote. “Instead, I knew I was going to die — but I’d known that before. My state of knowledge was the same, but my ability to make lunch plans had been shot to hell.” What do we do from day to day when we know there are not an inexhaustible number of them left? “Maybe,” he concluded, “in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward.”

The book also teaches us a lot about the real essence of life and death, and that is love. Those we love, and those who love us. It’s the theme I return to over and over again in the face of my own loss of my nine-year old daughter to a kidnapping that remains unsolved almost 29 years later. Once we understand the actual fact of loss, we understand what an act of outrageous courage it is to love. But at the same time we can see the beauty of love in a way we couldn’t before. During the course of his illness, Kalanithi and his wife decided to have a child together. The last words he penned here were for his daughter:

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Oh, what an ache in those words. His daughter will not know what she is missing, but here she will find it. But they capture the essence of love, and the essence of loss. I have though many times that I am not afraid to die. I know I cannot say that until I face death myself. But if there is a fear, if there is a reluctance, it is here. His joy is sated? Does not hunger for more? But how can that be? How can your heart not grasp at that joy, at that love, desire an ever-deepening infilling? How can you not be unwilling to stop, to ever let go?

The last part of the book was written by Kalanithi’s wife, Lucy, after his death. In many ways, this is my favorite part of the book. She wrote of Kalanithi’s purpose in writing this book: “He wanted to help people understand death and face their mortality…. ‘That’s what I’m aiming for, I think,'” she quotes him as saying, “‘Not the sensationalism of dying, and not exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.'” Did he fulfill that purpose? Well, yes and no. I don’t think any of us can be prepared for this journey until we are on it ourselves. But it helps to know that others have gone through it before us, and have found courage along the way.

His wife spoke of their love. The marriage had been a bit rocky before the diagnosis. They were both medical interns with very stressful schedules. But they pulled together. She wrote, “At home in bed a few weeks before he died, I asked him, ‘Can you breathe okay with my head on your chest like this?’ His answer was, ‘It’s the only way I know how to breathe.'”

And she wrote of the impact of living with life and death.

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This is a special gift, honestly. For those of us who are living who have been touched by death, life assumes a different color and texture. We see it through the stained glass prism of having experienced loss and death. If there is a gift, an understanding, that I could pass on to my children, this would be it. I have two daughters who tell me I have to live forever, but regardless of when or where or how, I know I won’t. When I do leave, I want them to be strong. I don’t want to leave until they have all that they need in life to survive, and having that, I want them to be able to see through the best colors in the stained glass story of our love. It is possible to cave in the face of death and loss. It is possible to turn that prism into something dark, comprised of fear, anger, hurt. But in the natural course of events, that prism actually brings a new beauty to life. You know if a sunset lasted forever, you would not be drawn to it as you are. It is because you know it will be gone quickly that your desire is to soak it in, make it a part of yourself. In that way, its fleeting beauty will become eternal within your heart.

Lucy Kalanithi also spoke of her husband’s courage:

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This is where I think I fail. I do not cry. I did not cry when I was diagnosed. My youngest daughter was with me, and her eyes filled with tears, but mine didn’t. Somehow I think perhaps I am not fully alive, as Kalanithi was. Many years ago I told my therapist, “I feel dead inside.” “Well, how did you feel when you were feeling?” she asked. “Like hell,” I replied. “That’s what the problem is,” she told me. “When we feel bad enough for long enough, we shut down our feelings.”

It’s self defense. It’s helpful. When I had my mastectomy, a number of nerves were severed in the surgery. I still have numbness, and it bothers me just a little bit. Funny enough, places that are numb can itch, but then can’t feel the scratch. For the most part, however, I have been really grateful for it. My post operative pain was far less than I’d thought it would be, and I am sure this is why. “Can you please sever the nerves?” will be my standing request whenever facing surgery, and I will only be half joking. I don’t like pain. People are always telling me how brave I am, but it’s not true. If I was brave, I would be able to embrace the pain. I wouldn’t spend my life running from it. Before the day comes when I do die, my desire is to make that journey into the storm of love and grief in the center of my heart, and set it free. I want to do this for myself. I want to do this to fulfill my purposes here on earth. I want to do this for my children. I want to do this to teach my children the most important lessons in life:

How to live.
How to love.
How to let go.
How to die.

Life is horrendously fearful. Life is gloriously beautiful. It is not to be wasted. It is not to be squandered. It is not to be hidden under a rock. We need to let our spirits do what they want to do, and that is to shine. That way we will have a light when we wander through the dark places, for ourselves, and for others we may help guide. I am not pretending to be there. I am not pretending to have the answers. But what little I have, I will share.

On the inside cover of When Breath Becomes Air, I scribbled a couple of lines. Whether they came from the pages of this book or elsewhere I don’t remember. But for my friend, for each and every one of us, on one near or far day, I speak these words:

In peace may you leave the shore.
In love may you find the next.

Blessings to you all, my friends.

p.s. Just as I was publishing this blog, I received news that my friend had passed on. God bless you, Carla. I will miss you.

Lots of feels

One of my blogs is about to disappear, and in the interest of saving it I am coping some of my previous posts into this blog. This post was from July 6, 2015.

It is 6:30 in the morning on my day off work, and I am here, awake. I have a lot of feelings inside me and I am sitting here with tears in my throat and in my eyes, longing just to be able to write my feelings down and push them off into the world. Like the words from the Anna Nalick song, “2 a.m. and I’m still awake, writing a song. If I get it all down on paper it’s no longer inside of me, threatening the life it belongs to.” But maybe I just really don’t have the courage. One day I swear I am going to write my novel so I can say all the things I cannot say, turn loose all the feelings inside of me.Half of the feelings I feel are vapors in the wind anyway.

As I sat here at my desk, I watched a cloud outside my window. For a moment it was the stunningly clear face of a pitbull terrier. But in seconds it morphed, first into a kitty, and then on to several indistinct stages on its way to becoming the blank cloudbank that it is at this moment. And that happens so often with problems. You have a dagger in the heart, but then it dissolves and is gone, unless you happened to put it into writing or other communication where it becomes immortalized, or kind of. For me, writing and getting things out is cathartic, but the problem is that when you get things outside yourself sometimes they take up residence in others, and become things totally other, and totally beyond your control at all. Things that are minor can come to define you.The other thing about writing is that often it helps me to figure out just exactly what it is that is hurting. Like right now.

The immediate cause of my distress is that my daughter, who is 18 weeks pregnant, was experiencing anxiety this morning at 4-something. I woke up. Presumably she has gone to sleep and I am still awake. This anxiety, this problem, will probably dissolve when the winds shift. But in me it stirs something far deeper. Whether large or small, my child is suffering, and I am powerless to alleviate the suffering. I can, and do, talk my head off in an attempt to fix things, but honestly sometimes I know that just makes it worse. That’s the other dangerous thing about words. For some reason the same words can mean completely different things to other people. She is anxious, so in an attempt to alleviate the anxiety, I employ the analytical mode, trying to explain why the problem is not quite as bad as it feels, and/or how to avoid problems in the future. This works well for me, but my daughter is in emotional mode, and she absorbs those words completely differently, internalizes them as criticism, which they are not intended to be.Emotions. Sometimes you just have to get control of them.

I remember in the second year after Michaela was kidnapped, I just felt angry, and it finally dawned on me that my anger was nothing more than sorrow that I had turned inside out and thrown outside myself because that was easier than feeling the sorrow. That was a big thing. But the same thing happens with the little things. We feel pierced by that dagger, which would probably dissolve in a minute, an hour, a day, unless we let that sorrow become anger and let it out into the world where it will inevitably cause more hurt. I personally have counted the cost and decided it is not worth it. That means I end up with a lot of feelings that get bottled up inside. Perhaps I need to find another means to transform and express them, through something more positive than getting angry. There are a lot of things that never ever get resolved, because I don’t speak of them. In the end I guess I don’t trust that they would get resolved if I did.

This child, the one whose anxiety woke me in the early hours today, was born five years after Michaela was kidnapped. One of my strong memories is from when she was a little baby, and she was crying. I picked her up and held her and said, “It’s okay. Mommy is here. Mommy will take care of you.” I was reassuring her from my heart with every intention of making everything right, of keeping her safe and protected and not letting anything hurt her. But in that moment I was flooded with the knowledge of the truth, that this was a lie. It was a promise I could not make. I had said the same sort of thing to Michaela, but in the end I had not been able to protect her. She suffered the most brutal fear, grief and pain, and there was not a single goddamned frickin thing I was able to do to prevent that, or to save her from it once she was in its clutches. I completely and totally failed her.

And I have completely and totally failed all my children. It hasn’t been as dramatic as it has been with Michaela. The daggers that have pierced them have been the kind that mostly dissolve in time. But they have all suffered grief and sorrow, and there is not anything I can do about it. I have made midnight trips to the grocery store for chocolate, taken them for manicures, sat and listened, hugged and cried. But the only way I could actually have prevented my children from being hurt was if I had taught them not to love. Jobs, money, those things all can cause stress, but only love can pierce the heart, and it can pierce deep and hard and leave shards that don’t ever completely go away. I know, because I have them myself.

My daughter and her husband, they are happy and excited about the baby they are having. But they have feelings inside them that perhaps they don’t even understand. Do they understand the huge vulnerability they are being drawn into? They are both smart kids, and they are both very self-aware, smart, imaginative and creative, so maybe they do. Or maybe it is just a vague sense of unease. I know that as they have thought about their child, they have been drawn to look back on their own childhoods. In doing so, they have encountered the things that hurt them. They think, they hope, that these things will be different for their child, that their son won’t encounter the cruelty of other kids, for example. But somewhere deep inside, as they consider their own hurts, they may be coming to realize that those things are going to hurt even more if they happen to their child than they did when they happened to them. I looked it up this morning, that quote that I just kind of know. I discovered it has a source, author Elizabeth Stone. It is, “Making the decision to have a child — it is momentous. It is to decide forever to have your heart go walking around outside your body.”

Well, I guess I am kind of placing my own thing into other people’s minds here. I think it is valid to a point. But really it’s my own point. For me, it is magnified, because it triggers that deep sorrow of not being able to save Michaela from suffering. But the fact is, I can’t save any of my children. I can’t make any of them happy. I can’t protect any of them from hurt. I can just hope that they have the emotional wisdom to live well.

To you, Michaela, I just want to say that am so sorry that I was not able to protect you from harm, that I was not able to save you. Wherever you have been, whatever you have been through, I just hope that you have been able to feel always that love that is beyond life and death, there in your heart, forever.

What if God’s purposes are bigger than your answered prayers?

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The title of this blog was taken from a Facebook status posted by the associate pastor of our church. He and his wife are currently experiencing a heartbreaking situation, as she is pregnant with a baby who is not expected to survive more than a few hours after birth. What is in their minds and hearts? I can only guess. Thousands of prayers are being offered for them, for their baby. What are they expecting to happen? I don’t know.I can only imagine.

But I understand the sentiment of this statement, what if God’s purposes are bigger than your answered prayers? I understand it because when I was diagnosed with breast cancer there were people who wanted to (and did) pray for a miraculous healing. But I knew in my heart that was not to be. I knew that this was a journey I had to take, for whatever reasons, for whatever purposes. Maybe it is for myself, to learn, to grow, to become the person I am supposed to become. Will cancer weaken me, or will it strengthen me? Who knows, I might end up competing in the Tour de France after it’s over! Or I might just be in my own individual spiritual Tour de France. Maybe it will touch other people’s lives. My children’s, for certain. I have seen this already in a few ways, for better, or for worse which will end up better, if you know what I mean. Maybe there is one stranger out there whose life I can end up touching through this. Who knows?

But this I know, we were not promised a rose garden. Bad things happen, even to good people. Life is hard sometimes. God has works to perform in our lives and in our hearts, and like the works of a surgeon or an oncologist, those works are not always pleasant in the moment. But they are for good, for a purpose beyond what others may see.

We can see it, though, if we are honest. We may not understand it, but we can sense it. We know when God is moving in our lives, because even though we may not like what is happening, even when we might sometimes have sleepless nights, tears, even a panic attack, behind even those things there is a sense of peace.

I am afraid of what I am about to do, it is true. I’m not sure where I am going or where I will end up. But behind it all, there really is that sense of peace. I have had a whole lot of practice in resting in that peace while toiling through the deepest, darkest places in this world, as most of you know. This is just another thing.

 

Breast Cancer Journey: Stuff Gets Real

img_1406I had a second surgery this past week. Some of the skin they left after my mastectomy had died and had to be removed. After the surgery was over I posted on Facebook, “I had a great time.” The sad thing is, that was true. It says something about your life when surgery is the highlight of your day. But they numbed me. They sedated me. They all took care of me, including my husband. They made sure I was not in pain and that I did not get lost.

In contrast, that morning I had met with the medical oncologist for the first time. He explained to me that my cancer right now is Stage IIIC. That is the last stage before Stage IV, which is metastatic breast cancer, meaning cancer that has spread to other organs. And they haven’t ruled that out either. The oncologist also commented that I’d had a completely clear mammogram in 2014, and then in October 2015 they find a cancer that turns out to have already advanced to IIIC.  It is lobular cancer, which doctors keep saying is “tricky,” first because it apparently grows in sheets so is hard to find, and also, according to the oncologist, if it returns it returns aggressively. Therefore, we are going to have to use the biggest guns available: a total of 20 weeks of chemotherapy, followed by probably six weeks of radiation, followed by five years of hormone therapy. And the chemo? It’s not some new, gentle chemo that has been developed in recent years. It’s the stuff that causes you to lose your hair, suffer nausea, mouth sores, bone pain. The worst of it, a combination that includes “the red devil,” will be given for the first eight weeks. I think the following 12 weeks are a little easier. I also get steroids. So I think this means I get to be bald and bloated, although ultimately chemo generally results in a dramatic weight loss.

It will probably be four weeks until I start the chemo, because I have to heal properly from my surgeries. I also have to have an echocardiogram to make sure my heart is strong enough for chemo, and the PET scan to make sure there isn’t any other cancer hiding anywhere.

So how am I doing? I am going more than a little stir crazy with the recovery from the surgery. I still have a drain, which prevents me from being able to do so many things, including just rolling around in bed at night and wearing a bra.  I remain relatively calm, however. I’ve done only a little online research. It talks in terms of 5-year and 10-year survival rates, and I got a little choked up over that, because I was able to think about how old my grandson would be in five or ten years, and there was so much more of his life I wanted to see. But I spoke to a friend yesterday whose mother in law had Stage III breast cancer, and she just celebrated 20 years cancer free. And that is what I intend to do. I am not looking forward to the treatments ahead, but I got through the surgery and I will get through this. My faith stumbles along, one day at a time, and I am stumbling with it.

I was reading some old journal entries this morning, and I read the one I wrote right after my repeat mammogram, when I started to suspect something might be wrong. I was reading a YA book at the time, Afterward by Jennifer Mathieu, and I wrote a quote from it in my journal: “I’m not going to try to reduce the weight of your burden, but I’m going to help you grow strong enough to carry it.” Yes, that is what I believe. That is what I feel.

I have that faith for my own journey. But if there is an area where I struggle, it is my ability to provide for my family, both financially and emotionally. Why is it so much more difficult to muster faith for that? Nothing new, though. It has always been this way. And yet always, somehow, we have survived. I have been intending for years to write, have two books swirling in my mind and word processing programs, but I have a paralysis because I am afraid that they will amount to nothing. Silly, I know, because in the process what does the outcome really matter? God has given me grace periods in which to pursue this, and has extended them again and again. I pray that what he has given me will not go to waste. Also written in my journal were these words:

“And though the Lord give you the bread of adversity and the waters of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you saying, ‘This is the way, walk in it,’ when you turn to the right or when you turn to the left…. And he will give rain for the seed with wich you sow the ground, and bread, the produce of the ground, which will be rich and plenteous.” Isaiah 30:20-23

But I noted also the verse right before it: “He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you.” This was one of the words my pastor gave me for the journey. He talked about Peter walking on the water, but later elaborated that Jesus had only stopped to allow that because the disciples had been afraid and had called out to him for help.

So, Lord, here I am. I am calling out to you! I am afraid. Be with me. You don’t have to do it all for me, but help me to do it. Set my feet in the right paths, show me the way, and let me walk in it.

Breast Cancer Journey: Perhaps I have not taken this seriously enough.

It is eight 15781015_10211421052747677_7308533655132470120_ndays now since my mastectomy. It was a modified radical mastectomy, unilateral, according to what my doctor told me at my one week checkup yesterday. That means that in addition to the breast they took a bunch of lymph glands. They biopsied one during surgery and found cancer in it, so they took a couple more that looked suspicious, and then she said they took ten others, most of which she didn’t think would be a problem. It turns out that cancer was found in every single one of the lymph glands that was removed. Not to state the obvious, but that is not good.

My mind went back to when I had that second mammogram, how I had though absolutely nothing of it, how routine and unimportant it was. Even through biopsy and diagnosis, I took it only kind of seriously. To me, even a diagnosis of breast cancer was a thing you dealt with and put behind you. My mother did that, a simple lumpectomy, no spread to the lymph glands, radiation for a few weeks, and it was done with. I have heard from so many people, breast cancer survivors. You do it and get on with it.

Now, breast cancer has become something that has run so far ahead of me that I can’t see it, and I know that I am going to have to run to catch up with it. It is not a simple fight anymore. It is going to be an all out battle. But it will be a battle.

Next steps: I meet with a medical oncologist (my doctor is a surgical oncologist), probably have a PET scan to see just how far ahead this beast has run, and schedule radiation and likely chemo.

Can’t do anything until I finish healing from this mastectomy, though, and that is my first goal. So the good news, for anybody who may be facing this procedure in the future, is that it was not nearly as painful as I thought it might be. I’d classify it more as discomfort. There are a couple of reasons for this, perhaps. One is that my doctors injected a local anesthetic that was supposed to last up to 72 hours post op. The other is that I have noticed I have a considerable amount of numbness. Not sure what this is due to. My doctor told me, but I think I wasn’t paying that much attention. I also didn’t pay that much attention when she said whether it would be permanent or temporary, because I am sitting here thinking that it can remain forever as long as it remains past the point where it would hurt if it wasn’t there! I have definitely had discomfort, and took percocet for a few days at the beginning, although within a few days I had switched to motrin except at night. But it was not nearly as bad as I’d anticipated.

The really annoying part is the drains. There are two tubes coming out of my body, each collecting liquids of varying shades of cherry and amber in these bulbs that hang by clips from my clothes. A couple of times a day I have to empty them and measure the liquid. It’s not awful, but it is annoying. There are little bandages that surround the holes where the tubes come out of my body, and they do not want to stay put at all. They are always having to be replaced, and this is annoying for me because the whole idea of tubes coming out of my body is very creepy for a germophobe like me. They were still doing their job too well to take them out yesterday, but hopefully within a few days they will be gone, and I will feel like a brand new person! In fact, healing this mastectomy is feeling like such a necessary step. It’s hard to feel like a fighter when you can’t lift anything that weighs more than five pounds, or bend over without feeling like you might break something, and when you are just so doggone tired.

So onward with this healing, which just takes time. And rest I suppose. Then to the battle.

Thank you for your prayers, and I guess I should take a moment to say that my faith doesn’t and never has rested on such things as absence of hardship or instantaneous healing, or answers to any other prayers. It seems pretty obvious to me that there are purposes to this life that require us to step outside our garden of comfort. All things work together for good, one way or the other. Meanwhile, I have been feeling a level of calm through this that amazes even me. So your prayer support is helping. Honestly, I am feeling very tired, like too tired perhaps to prop up a lot of my own faith. So thanks for holding me up with yours.

Thank you everybody. I love you.

Bone deep lonely

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I have been driving around town crying this morning. Mornings have just become really difficult for me lately. It is when my mind and emotions spin tales I can’t even read, leaving me a soggy mess of emotion. Most of the rest of the day I put them aside, or shove them into boxes of resentment. Even in the mornings I avoid them when possible by doing things like online classes. Distract. Disengage.

Right now, however, it is 10 a.m. and I am sitting in the parking lot at Target trying to pull myself together.

I was thinking this morning about God, and church, and I found what I was longing for was a place where I could collapse in a heap when I was scared, or when my heart was breaking, where there would be someone, or Someone, to catch me and hold me.

My first stop this morning was the hospital to get some blood tests. The hospital is new, built on the site of the old hospital, which was torn down several years ago. It’s set on a tiny mound of a hill, and as I was leaving the parking lot I looked out on the view, and I recognized it as the view I had looked out on from my mother’s hospital room as she lay dying in that old hospital. It will be 12 years ago next week, on October 10th. More tears, and the thought, I miss my mommy. If only she was here I would not feel this way.

But then I realized that wasn’t true. Don’t get me wrong. I love my mother, and I even admire her parenting. I look back on her bravery expressed in her ability to not get involved in my choices, to say very little in situations where I as a mom would be wanting to jump in. But I thought, maybe that is the problem, because if she was here, I would still feel lonely. I never ever knew what was going on with my mom because she never ever said. She was British and held to the stiff upper lip, and kind of encouraged that in me as well. Funny but I’d recently been engaged in an online discussion about whether kids should be left to cry themselves to sleep. I know my mother believed in that because she tried to convince me to do that with my kids. The opposing argument to the let them cry theory is that they learn not to trust that their emotional needs will be met. And I wondered, is that why I am this way?

Because I am never going to find that place where I can collapse and be held, because I am never going to be able to allow myself that vulnerability.

I have got a boatload of hurt here inside me, so deep. I have the worst kind of loss, betrayal, abandonment, grief, fear, all floating in this lonely ocean. And I just don’t know what to do with it, except for this. Write it down. As songwriter Anna Nalick says, “If I get it all down on paper it’s no longer inside of me, threatening the life it belongs to.”

As if.

Well maybe it helps a little. My tears are dry now, enough to go into Target anyway.

Just remember, it’s okay to hold your children when they cry. Perhaps they will not end up feeling bone deep lonely, because they will allow themselves to be vulnerable enough to allow others to catch them and hold them when their hearts are broken or they are afraid.

Zen and the art of pain and suffering

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I guess I should first confess that I know pretty much nothing about Zen. I have attended exactly one class in Zen meditation, and didn’t entirely get it. Meditation has always been extraordinarily difficult for me. My mind does not like to be still. AT ALL. I cannot stand in line somewhere without pulling out my cell phone to cruise the internet, or a book. I have a desire for continual input.

Here is the best I can do. You tell me to empty my mind, and my mind will think about emptying. Then it will think about all the things it is emptying out of it. If you tell me to think about my breathing, I will probably feel a need to cough. If you tell me to be still, something somewhere is going to itch. But still, I am giving it a try. I went to the class, and I have meditated two out of the three days since then.

Not that it has been easy. For one thing, I have been kind of an emotional trainwreck for the last couple of days. I can’t verbalize exactly why this is so, but I think at least in part it is my empathy buttons being pushed. So today I decided it might be a good idea to use meditation to explore this pain to find out what it is all about. Clue number one that this was not a good idea was that I was doing it in a reclined position on the couch. Not exactly Zen. I started crying, then I started praying. Then the dogs started barking. I quit.

I had a brief chat with a friend who is also taking the meditation class, then got out my cushion, put it on the floor, and tried again. This time I did as she suggested. When these thoughts came up, I noticed them and released them. I counted how many breaths I could take between thoughts. 1 … 1 … 1 … 1. But I kept doing it, thinking and releasing and breathing, and what do you know? I FELT BETTER!

My question at the end, though, was is this good? What is the difference between this and the denial of my feelings that I have indulged in for so many, many years, until they have reached an avalance? Perhaps there is a difference between denial and release, but I’m not altogether sure, because they feel kind of the same. This is the essential feeling: “My suffering is not going to do a single thing to change anything for the better. In fact it will just make things worse. Crying will only give me a stuffy nose. So stop.” Or in the context of meditation: breathe, release. Either way it stops, but have I killed off a little bit of myself? And if I have, was it a bit of myself worth preserving? Must ask my teacher this week and I will get back to you.

I understand this is one of the precepts in Zen, though, the acceptance that life is suffering, and the release of it. Perhaps I’m wrong or misunderstanding it. Again, I will get back to you.

So … Zen, God, Zen, God. Me in a state of spiritual dysphoria. Who is God? How I long in this pain and fear to feel that someone greater than I am is on my side, holding my hand, guiding me, protecting me, loving me, making sure that everything will be okay. Meanwhile, getting a grip on my own thoughts and feelings isn’t going to hurt, right?