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.

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.

Surgery Tomorrow!

15823276_1149299361835724_1780175567423913694_nThis time tomorrow (8:00 a.m.) I will be in surgery. Today is going to be a busy busy day. I have so much just plain cleaning to do, which I left till the last minute so I wouldn’t have to do it over again. I will start with folding the towels, putting the blankies in the dryer, and another load of bedding in the washer. I have instructions to sleep in clean sheets tonight. I am still trying to figure out how to keep my bedding clean, since I sleep with four small dogs, and since they live in my bed during the day as well. I’m a bit of a germphobe, so this is a particular challenge for me. But, anyway.

Next I am going to get my toes done. I have given up the manicures, as much as I loved them, because the time and money are just not going to be available for them. But my toes are difficult, and feet so naturally unattractive, they need help. Plus I have to look at them all the time, spread out on the bed in front of me, as they are now.

This afternoon I have to go get an injection of radioactivity into my lymph glands. I assume this is to make me glow in the dark, you know, just in case the lights go out during surgery.

And at the end of the day, I have to actually try to get to sleep early, because I have to check into the hospital at 6 a.m.!!! Well, at least we should get good parking.

I will admit I am a little nervous, but mostly I am excited to just get this over with finally and move into the next phases. I am not going to lie, that final phase a few months down the road, where I get brand new perky boobs, is a great motivator. I saw a dress today with a low back, and I thought, hey, I might actually be able to wear something like that in the future. Never, ever in my life, even when I was young and before children, could I ever have thought of something like that.

I am finally beginning to see ahead of this thing. I am beginning to look forward to summer, when hopefully all the treatments and surgeries will be over, when I will be cancer free, and healthier than ever. It is beginning to feel a bit like an awakening, that at this point in my life, instead of winding down I will be winding up for a whole new chapter.

Meanwhile, I have a few mountains to climb, and my first steps are in this surgery tomorrow. My husband and my daughter will be going with me to the hospital with me. And when I let go of their hands to go into surgery, you can bet I will be reaching out to grab another hand, one that bids me come, walk on the water, and tells the waves around me, “Peace. Be still.”

I will post again in a few days, to let you know how things are going.

Thanks for your support. Love you all!