This is one of those race photos they try to sell you. Hehe.
I took May off, but was back at it again in June, this time in Seattle.
Me and my Seattle running buddies. They stuck by me the whole way.
Interesting Fact: We have 10 kids between us.
How do I explain this marathoning madness? Simple. I know myself.
When I asked my oncologist what I could do to minimize my odds of recurrence, she said, “You will hear a lot of things. But there are only two things we know for sure. Exercise regularly and keep yourself to your lowest healthy weight.”
I am a compliant patient, but I knew I would be even more compliant with these goals on the horizon.
So that’s that. I don’t want the cancer to come back. Plus there are added bonuses.
When I run regularly, I feel better. I’m more confident in my body. It’s the only time I actually enjoy my booblessness.
Vigorous exercise marks a clear before/after for my treatment. I couldn’t run during treatment because of my extreme nausea and pain. Now I can.
Running is an individual sport but runners compete against themselves. “To PB” is a verb — it means to get your personal best time.
So I thought that by running three races in four months, I would PB by the end.
I was wrong. I PW’d.
That’s right. I got my Personal Worst.
I’m not one for excuses but I do like a good story, so here goes. Pull up a chair and stay awhile.
Devoted readers of my blog may recall that I started an experimental use of an old medication, Metformin, in early May to prevent the cancer from recurring. My oncologist reassured me that any side-effects would be short lived. She obviously forgot she was talking to the side-effect queen.
I was so nauseous, I ended up back in bed most evenings. My doctor told me to take Zofran, the big guns anti-nausea drug. It only kind of helped and heaped on new side effects like dizziness and constipation. It was one thing to endure those when I could lie in bed all day during chemo. But I’m trying to hold down a full time job and raise a young family here.
I tried cutting my dose in half, reasoning that taking some of the drug was better than none of it. They had to back off on my chemo dose because of my bad reactions, so why wouldn’t I do the same thing with the Metformin? When the nausea persisted, diabetic friends offered suggestions. Cut down on your carbs. Take it with meals.
I tried all of the above, to no avail.
Worse yet, the nausea and related fatigue started to cut into my running. Exerting one’s self while dizzy and pukey is highly unappealing. As I pulled back on training, I started losing some of the ground I had gained in my wellness. I went from feeling better to pretty bad again.
The morning of the Seattle race, I took my medicine before the run.
I spent the first 8 miles feeling nauseous.
“Slow down a little, I’m sorry,” I kept telling my friends.
They obliged, insisting that it was all about running together.
And we did. We ran the whole way, except for the water stations. And my insistence on high-fiving the kids who came out to cheer for the runners. And to thank the people carrying flags to remember fallen soldiers.
Oh, and the potty stop.
But we ran and we ended with the uniquely exhilarating feeling of delicious endorphins coursing through our veins.
Even a PW wasn’t terrible.
But that was the beginning of the end of my affair with Metformin.
When I got back home, I had an evening where I became arrested by nausea. That was the final straw.
Why, I reasoned, am I trading in something I know will help me (exercise) for something that might help me (Metformin)?
So I stopped taking the pills.
Today I met with the nurse in the Survivorship Clinic. She’s a runner so she appreciated my PW tale. She has seen a lot of people on Metformin and her opinion was this:
The running is more important. The drug is a hypothetical. Metformin is hard for some people, and it sounds like you are one of those people. Quality of life matters and you need to keep exercising.
Cancer and survivorship often involve selecting between two crappy options. It feels unsettling not to do something medically to keep the cancer from recurring. But it felt even worse when I tried to.
My PW clarified the best of the crappy options. Stop the drugs and keep running.
And keep finding ways to hang out with good friends. They’ll make it fun, even when it is your worst time ever.
While I have had fun making fun of all the pink crap that purports to support breast cancer patients, I have avoided direct criticism of the Susan Komen Foundation. Until now.
I don’t know these women. I got their picture off Flickr.
They are completely fabulous though.
I know women who have felt transformed by the Three Day Walks, Komen’s signature event. I cannot overstate their symbolic power. They provide community. They make a natural place for a comeback from treatment or even grief. They are a way of giving cancer the middle finger. The feeling of unity and purpose at these events humbles me.
How can you criticize an organization that makes these experiences possible?
Friends, I have to speak up. While the unity may be 100% real, the purpose has become distorted. I feel that these women and the people who donate to them are being misled. I do not like to see people’s good intentions exploited.
“For the Cure” trademarked? Maybe we’d cut them slack if they truly were about curing breast cancer. Instead, we learn that only 2% of their funding focuses on metastatic disease.
Let’s face it. If you don’t deal with metastatic disease, you are not focusing on The Cure. Since 20% of all survivors will get metastatic disease, regardless of stage at diagnosis, there is a 1 in 5 chance that this will become our problem, if it isn’t already. We need cures. Real ones, not just the kind you find on key chains.
The trademarking should have tipped us off. Trademarking is not about science. It’s about profit.
Komen has become a brand to such an extent that the reality of breast cancer has been lost.
Can you tell I am not a regular patron of the Home Shopping Network?
What was the straw that broke my back?
It’s Nancy’s latest product, Promise Me™ perfume.
My outrage is simple and comes in three parts: linking cancer to a perfume, the weird beauty breast cancer connection, and the misleading use of the money.
1. Many people in chemo, myself included, become incredibly chemically sensitive. I almost passed out when a woman at my gym sprayed perfume in the locker room. I was shaking and it took a half an hour for the episode to pass. The last thing I wanted to be near or around was any kind of fragrance. There is even evidence that fragrance may be carcinogenic – For the Cure® indeed!
2. Why do we have beauty products to raise funds and awareness for breast cancer alone? It is the only form of cancer that demands that we stay beautiful, even as we puke our guts out and lose our hair. Komen perpetuates this ideal.
I call shaved head. Or photoshop. She still has eyebrows.
Couldn’t they have photoshopped her eyebrows?
Breast cancer is the Beautiful Cancer. Can you imagine a brain cancer perfume? How about anal cancer? Why is there not the same dissonance with breast cancer? It’s all cancer, for crying out loud!
3. This “floriental” scented perfume costs $59.00. Of that, how much do you think goes to research? If you said $1.51, you are correct! (Thanks for the math, Uneasy Pink!)
Since Komen spends a minuscule fraction of that on researching metastatic disease, very little of your fifty-nine bucks is going toward a cure.
Hell hath no fury like a nauseous me involuntarily squirted with perfume, Komen. It’s on now.
To the fantastic walkers, I still love you. May I direct you to Susan Love’s Foundation’s Avon Walk? She is a breast oncologist focused on research.
(Yeah, I know. Avon. Beauty. But I still say it’s better…)
I don’t remember what had sent us to the hospital that particular time. Sometimes it was a spiked fever, sometimes it was uncontrollable pain or vomiting. But here we were again, my brother’s thin body racked with the perpetual pain he endured at the end of his life. Jeremy hated lying down and usually prefered to get out of bed and shuffle around the room, even if he couldn’t really go anywhere.
As we were waiting for the doctor to come and tell us what the next steps would be, I sat there with that familiar feeling of helplessness. Should I talk? Should I be quiet? I searched him for a cue. He started feeling nauseous, and I knew that meant he needed silence.
He leaned over the bedpan heaving. The violent movements jarred his aching skeleton, causing him to wince. I saw the sickness wash over his frail body.
I couldn’t stand to see this suffering. I hated doing nothing, so I rushed off the chair and firmly embraced him.
“I got you,” I told him.
He stopped heaving. His face relaxed. He looked at me.
“It stopped,” he said with wonder. “How did you do that?”
I was equally surprised. “I don’t know. But I’m so glad.”
My brother died a few months later, on November 23, 2007.
Last Wednesday, I had my very last treatment. It went well except for a minor stir when the nurses and doctor’s office took a good hour to sort through whether I had finished getting treatment last time (“You’re done! Go home!”), whether I had two more treatments (“I’m so sorry. I know you were looking forward to being finished.”) or whether this was, in fact, my final infusion. Nothing, it seems, can be without some drama.
The next day, I left bright and early for the Life Beyond Cancer retreat in Austin. I learned about it from a blogger/twitter friend Jody Schoger and a Facebook friend Beckye. One of them invited me initially, and hearing about it from the second convinced me I had to go.
I hesitated to travel so soon after treatment. I knew it would follow this last Herceptin infusion, which for many people, is a non-event. Compared to chemo, they are right. Nonetheless I get a 24 hour Herceptin flu. Yeah, I know how to have a good time.
What an incredible way to transition into post-treatment survivorship. The first friend I made on the shuttle to the conference center shared my love of running and the Mexican rock band Manà. We are Scrabble geeks and have kids with similar ages. I identified with her in so many ways, and then she matter-of-factly told me that she is in the midst of a recurrence. For a split second, I froze up when she told me. But I moved past my fear, enjoying her humor, warmth, and conversation.
The retreat focused on healing mind, body, and spirit. There was yoga, qi gong, healing walks, delicious healthy food, and spa treatments. The speakers were survivors and nurses who spoke about health, sex, survivorship, and advocacy. I confess that if I know I am meant to be inspired by a speaker, my inner adolescent is poised to come out and act beligerent. These folks all passed my B.S. test and touched me, as the room filled with the laughter and tears of recognition.
Socially, we were able to let it all hang out. Not only were we no longer fish out of water, we all, as one woman put it, swam in the same aquarium. I didn’t have to explain my compression sleeve. I didn’t have to worry about folks assuming I was all better when they heard I had just finished treatment. Nobody pushed their food around their plate during meals, avoiding eye contact out of awkwardness, as you shared some of your harrowing tale.
There were women who had gone through or were still in the midst of all kinds of cancers, with their journeys taking a lot of different shapes. There seemed to be a shared determination to live authentically. We understood each other’s PTSD and could easily fall into conversation with any other participant. I stopped freezing up when women told me they had metastatic disease or had dealt with recurrences. They became role models for living courageously and fully. It was both comforting and exhilirating.
Saturday night was November 20 on the Gregorian calendar. But it was 13 Kislev on the Hebrew calendar, the anniversary of Jeremy’s death. We light remembrance candles for our loved ones at nightfall.
Jeremy died around 8 PM on 13 Kislev three years ago. After he took his last breath, the crowd of friends and family who had gathered to be with him stepped outside his little apartment to give his parents and his wife some quiet last moments before the hospital came to take his body away. It was his wish that his body be studied to benefit the next person who had his disease. He had what is called an “orphan cancer,” meaning that not enough people had it for there to be much useful information. As we stepped into the clear night air, tears streaming down our faces, we noticed the full moon shining above us. It gave us comfort, since Jer had always had a deep connection to nature.
Since the Hebrew calendar follows the moon, I looked up Saturday night as the retreat was drawing to a close. The sky was not clear, but I could see the light of the bright full moon from behind the clouds. I was with April, one of the first people I met through my blog. What a world, we were saying, that we could now spend time together in real life.
My brother was the one who got me online. After he died, I needed more of him. I needed pictures, connections to his friends who had become my own as we shared the difficult and precious last months of his life. One of them told me to get a Facebook account. I did. The rest, as they say, is history.
My life online brought me to this retreat via Jody and Beckye. My life online gave me friends like April, who I now stood with underneath the 13 Kislev moon, sharing the story of my brother.
And I, too, felt embraced.
Maybe Jeremy saw my unsteadiness as I headed into this new phase of survivorship. My love for him certainly led me here.
I relaxed into this feeling and heard the words, “I got you.”
This is a video one of Jer’s friends made. Jeremy reads a poem he wrote at the end of his life, as he came to terms with his own death.
The images are of his life’s work and passion.
The other day, I was checking out my bald head in the mirror. I noticed a scar on my scalp. It’s about an inch or two long, right at the edge of my hairline on my right side. I probably would have lived and died and forgotten about that scar since it’s been hidden under my thick mass of hair for years, but the chemotherapy stripped my head of its covering, and lo, there it was.
Touching it, I flashed on the memory of its origin. I was about 5 or 6 years old, jumping on the bed at my grandparents’ house, taking advantage of their grandparental laissez faire. The humble queen mattress with its polyester spread was my trampoline and I liked to bounce high. Somehow I slipped and hit my forehead on grandma’s night table, upon which she had placed a glass covering to protect the wood from water stains. I remember bleeding profusely and my grandpa invoking his navy training as he attempted to put a butterfly bandage on my head, to no avail. After a long debate about whether to take me to UCLA or USC hospitals, I ended up in one of the ERs and had the corner of my hairline shaved so I could get the 5 or 6
stitches required to suture the cut.
Hadn’t thought about that in years.
Then I thought more about scars, looking at the smooth pink line in the mirror. They are those places where you have been injured but somehow, over time, your body manages to heal over. They never totally disappear, and I thought of the scars I have incurred already with this cancer, the scars yet to be. Scars are sensitive to touch when they are new, sometimes even after they’ve been around awhile.
My step-brother would have turned 39 next Sunday. He died just over two years ago from advanced metastatic prostate cancer. I cried every day for over a year after he died. I grieved him and had just felt like I was beginning to move out of that intense grief when I received my own cancer diagnosis.
The loss of my brother is a scar in my heart that had just begun to heal, and even then, imperfectly. My own cancer presses on that scar, making me feel new waves of sadness, loss, and pain. I want to talk to him more than ever. I understand things now about what he went through that, as close as I was to him, as much as I worked my powers of empathy to their capacity, I could not possibly understand.
Going through what I did with my brother makes me a different kind of cancer patient. On a technical level, I know more jargon than I would have otherwise. I understand treatments and protocols. I understand mechanisms of tumor growth. I learned how much is not known about cancer, and how unique and different variants of the same disease can be. On another level, I learned that you can make choices, that it’s important to keep an eye on your emotional and spiritual self in addition to your physical self. That you can –– and need to –– take
help from others and that it feels good for them to give.
My newfound understanding of what my brother went through is still limited. He had symptoms that I have been spared, particularly the bone pain that was so difficult to control. While my brother kept hopeful that one of the experimental treatments was going to cure him, his cancer was very advanced at the time it was discovered. The standard treatment protocol failed him early on. I do not know –– not in the way I am talking about now –– what it is like to live confronted so fiercely and constantly by your own mortality and to be faced with the uncertainty of the means to maintain it.
I tell myself every day that my cancer is curable. That my tumors are shrinking. Yes, I am spending way more time in bed than I care for. I feel out of it in my life. I hate feeling confused and weak. I still struggle with managing my nausea, as it always lurks beneath the surface, threatening to break through with the slightest perturbation of the delicate equilibrium I have created of drugs, rest, and imposed emotional calm. But I am curable, and the cure is working. I am not like my brother in this way, but I am connected to him as I go through this time.
So my brother is with me, partly through the scar of my grief. Knowing him and being me highlights contradictions of Cancer Culture. Because of my brother, I know how to separate the spiritual and physical battles of cancer. I’ve heard people compare a cancer diagnosis to a Rorschach: you look at it and reveal what you are really made of. I myself think of it is a forest fire: it clears out all the weak and nonessential parts of you and leaves the biggest, most fundamental parts behind.
It’s a struggle to make sure that what gets left behind are the best parts of you, though. That the essence that you cling to is an essence of your strengths, not your fears or your weaknesses. This is easier said than done. This disease, even as it is being eradicated in my body, has taken over my life. It’s marked me with my bald head, port, biopsy scars, the constant discomforts of chemotherapy. It’s marked my family, as we have had to learn to cope with my limited presence and involvement. My two year old has started to play that his doll has cancer. He asks me almost every day if I am still sick. How do I maintain a sense of my own identity, to stay hopeful about and connected to life and humanity in the face of all of this pain? Cancer Culture dogma insists that triumph in this spiritual realm will ultimately lead to a triumph in the physical realm.
No, my scar tells me. It’s just not true. And it hurts that fresh and tender scar to hear that message so relentlessly. My brother won that spiritual battle. Even at the very end, he was he: loving, gentle, tenacious, thoughtful, irreverent. His great big world, which he landscaped with mountaintops, vast deserts, and rainforests, had shrunk down to the 1 bedroom apartment where he spent his final days. But he still found ways to connect with his friends and loved ones. He still ate his favorite foods and walked outside and enjoyed the sunshine. He was he, a beautiful soul. He had his moments of anger and depression, but he was he.
We fight the spiritual battle because it’s the one we have some say over. We work to maintain a sense of our selves and not let the disease metastasize onto our identity. You can fight that fight well or fight it badly. The physical treatment will work for you or it will not. There are people who get extremely depressed, drug themselves oblivious throughout treatment, become bitter and angry. And they live. And there are people like my brother who take seriously the emotional work that cancer imposes. And they die. Studies have shown, despite our grandiose notions of our minds being able to conquer so much in the body, there is no correlation between positive thinking and survival.
Of course I would rather not be depressed and not be bitter and angry. I get that I am not immortal and if my days are numbered, I prefer to stay loving and connected. But that does not preclude honesty. And honestly, the net result of this positive mythology is we can become blind to medical realities because of our faith in the ultimate importance of the spiritual or emotional ones. Likewise, if in the course of dealing with the physical reality of cancer, we get pissed off, drug ourselves to cope, express bitterness and anger, it is often met with a superstitious reaction that somehow, this means we are not fighting the right fight.
I am fighting the spiritual, emotional, and physical battles. I do not take for granted that I am doing well on the physical front. That battle is for my mortal existence. The other fights look beyond that. They are fights for my sense of self, for my connections to whom and what I love in this world. That is worth fighting for too. And, when I am done, I hope you can all nod your heads and agree, “Yes. She had this horrible experience. And she survived it. And she is she.”
