Last chemotherapy treatment

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I had my last chemotherapy treatment today. I made it through 20 long weeks! The staff and my nurses at Epic Care were wonderful, as always. As I finished my infusion they came out with pompoms and an award and gave me a cheer. It was embarrassing, but fun! The woman sitting next to me today was having her very first chemo infusion. She had the same disease, and the same chemo regimen. I was really happy to tell her that it was nowhere near as bad as I had feared it would be. The drugs are good. Take them and you won’t suffer from the unremitting nausea and vomiting chemo used to be known for. She had her concerns and had done her research, and had a good plan. Then I told her how wonderful the staff at the clinic were, and how they made chemo actually pleasant. For some reason everybody, including the staff, laughs when I say that. But really, the infusion is not painful or uncomfortable in itself. For me it was a time to relax, read, nap, be taken care of.

I expected to dance out of my last chemo and start celebrating immediately. I was given the all clear to enjoy some foods that have been denied me for awhile, and I considered that I needed to go out to a couple of restaurants and do that. I guess I forgot that on the last day of chemo I actually received chemo! It decided to remind me that it wasn’t all pleasant. Very, very tired today, a little achey, even a little nauseous. My brain has turned to complete mush. I can’t tell you how many times I have walked out to the other room today, only to say, “Why am I here?” once I got there. But I know by tomorrow I will be feeling better for the most part. In a couple of days I am starting a cleanse to get all the toxins out of my body. The happy dance is coming soon.

I was glad to have a woman having her first chemo sitting next to me this morning. If there is one thing I want to come out of my experience, it is to be able to say to others who are heading into it, “Don’t be afraid.” Yes, there are side effects to chemo, but for most of us, most of the time, they are manageable. Life goes on, with a few extra naps, and a few less food choices.

I had ordered a new necklace through the internet, and it just arrived today. It is a mommy and baby elephant. Have I mentioned how much I love elephants? Probably not. Well, now you know. Better yet, it is made of dragonglass! More commonly known as obsidian this side of the Seven Kingdoms, dragonglass kills the Others, the White Walkers who are coming to destroy the world. Interestingly, it created them as well, as when it was plunged into the hearts of humans that is what they transformed into. In the opening episode of this most recent series, those who were reading over Sam’s shoulder also discovered that it is a cure for greyscale, a fatal disease in which all of a man’s (or woman’s, or child’s) skin is turned to stone. I was planning on slaying a few demons and being healed, so a little bit of dragonglass coming along right now can’t hurt, can it?

So here is my current plan. I am going to spend every day marking how much better I feel than the day before. In between chemo and radiation, I hope to be able to recapture just a little bit of strength in my muscles. I am going to mark each and every way I feel better. And I will spend a little time every day studying my hair to see how it is growing. Already I have a blanket of peach fuzz on my head, as you can see in the above picture, some of it long enough to make little drifts over the top of the temples of my glasses! I have gotten to really hate scarves and head covers, so I am anxious to never have to wear them again!

When I get to radiation, since I have to be there every single day, I plan to take my laptop and go to a coffee shop afterwards. I don’t have LTE on my laptop, so I won’t be tempted by Facebook. I will have to concentrate on Word, and the two books I have swirling around in my head waiting to take form on the page. If you are one of my praying friends, or one who sends puffs of positive energy, I’d appreciate that now. I’m not sure which book to concentrate on first, and while they are swirling they are not fully formed. I need all the help I can get to bring them to birth. I am also taking recommendations for coffee shops in the Dublin area, since that is where I am having radiation therapy.

Meanwhile, as best I can, I will wait and see. I will try to live in each moment rather than in fear of the future. There is one thing I know, and that is that life can turn on a dime. You can wake up one morning and when you go to bed that night your entire world will have changed. Sometimes, those changes are even for good. I believe in those things. I’ve had a little voice in the back of my head that has said several times, “Something really good is going to happen.” I generally shush it, calling it wishful thinking, the fantasies of someone right before they drown maybe. But I’m going to listen instead, embrace it, be open to it. However big or however small, I am certain that something really good is going to happen, and I will be grateful.

Thank you all for your support through this part of my journey. It means more than you could know. I love you all.

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.

Coming to life!

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While on the outside these are kind of scary days when many things in my life are uncertain, on the inside I feel like something is coming alive in me. It is like a bubbling up inside of me of joy and excitement. Only people who have followed my blogs for a long time are likely to recognize what I mean when I say this, but the ocean waves have set me on the shore once again, and outside of that water I can see the brilliance in color and clarity of the world around me. There is a song in the distance that was muffled before, but now calls to me.

I will write more about this in days to come, but the bubbles just wanted to get out and be known. Enough for now.

Shine little light! Grow bright!