Archive for March, 2010

A Poem by My Husband on the Occasion of My Mastectomies

03.31.2010

So Much Roundness

In desperate heartbreak sits the husband whose wife approaches the loss of her breasts.

Attachment holds firm in places where flesh cannot touch.

Like an unexpected slideshow set to the timeless music of his life, the images of comfort and beauty and motherhood and some indescribable (but no less glorious, exquisite, actually delicious) essence of femininity run round-and-round-and-round until he is light headed with the silhouetted sense memories of so much roundness.

Usually, he thinks, when faced with an impending loss, a man realizes and anguishes over all that he took for granted…

Especially when it is the loss of something he never expected to lose…

Not so with this loss.

He swears that not a day went by without his conscious appreciation and active gratitude for having her beautiful breasts so close at hand!

(He couldn’t possibly count the number of times she pushed his hands away for the relentless and inopportune timing of his touches.)

He begins to cry.

Just look! Look at all of those dresses and blouses and t-shirts and bras and nakedness and embraces…

More simple and sensual joy than could possibly fit inside even an oversized happy feeling.

And yet…

And yet, he thinks, these very breasts, which conjure up images of pure perfection, are not made of Divine matter….

Context is key. Association paramount. Connection supreme:

“When held against nothing, they are everything.

But when held against you, my precious love, they are nothing to me.”

Tags: , , , , ,
Posted in Treatment | No Comments »

Parenting Through Treatment

03.22.2010

I got a lot of advice when I was first diagnosed with cancer. One suggestion I heard often was to let things go and take care of myself. My job, my projects, my chores would wait.

But, I wondered, what about my children? They will not or cannot wait. This is their childhood. They need me now. How is that supposed to work?

Even before my treatment began, the conundrum of simultaneously letting go and parenting came up. A few days before I started chemotherapy, my children came down with the swine flu. At the advice of an oncological social worker, we had not yet told them about my diagnosis or upcoming treatment. We were waiting until the last possible moment so as not to make them anxious. Then my youngest contracted a fever and what the pediatrician confirmed to be unmistakable H1N1 symptoms. We could no longer wait to sit them down and have The Talk. We explained my diagnosis and why I was going to quarantine myself at somebody else’s house. This was not an easy conversation and we all shed many tears. A shadow hung over our discussion. Almost exactly two years earlier, my step-brother, their uncle, had died from cancer, so the disease was very real and scary to them. The worst part of this conversation was that I did not get to hug them after we broke the news. It was the beginning of me having to deny my strongest maternal instincts in the interest of my own well-being and survival.

One by one, the three children got the virus. I stayed at an acquaintance’s house for the next ten days. A kind family with a spare room had heard of our difficult situation and offered to take me in. We had only lived here for four months prior to my diagnosis, so we had not yet made close friends. A high school chum, whom I hadn’t seen in twenty years, was moved by our situation and with only a couple of days’ notice, she flew out to help.  She stayed with me and this wonderful family, accompanying me at my first chemo and my port placement surgery. Amazingly, this motley bunch of virtual strangers-turned-friends managed to support me with love and compassion as I started my cancer treatment. This wild journey, it seemed, would not just involve chaos and heartbreak; it would be cushioned by miraculous generosity and love.

When I returned home, my son, who was two years old, clung to me. His insecurity seemed amplified by my strange reemergence. In my ten-day absence, I had already been transformed. My usual peppy energy level had sunk notably and my appearance had altered. Although my doctor had told me it would take several weeks for my hair to fall out, my sensitivity to the drugs was high.  My hair began to fall out after one week. After a clump came out in my brush and made me cry, my husband came by the house where I was staying to shear my curly locks.

My son wanted to be with me and I with him. I felt guilty for my limitations. I had to figure out how to parent from my bed. We read together and we talked. We developed a repertoire of games I can play with my low energy while resting. He has become so accustomed to them after my four months of treatment that on the days when I have been up and about, he sometimes becomes indignant: “But I want to go snuggle in your bed!”

Even when I am weakened, nauseous, and fatigued, I cannot stop being my children’s mother. I cannot stop loving them, caring about them, fretting about them, working to support their emerging and precious selves. But, as I said, my instincts are often denied. I really have had to let so many things go. I can no longer look after my daydreamy eldest’s organization of her schoolwork. I have consulted with her teacher, and we are lowering our original goals on that issue for this year and are focusing on her learning. She may not get every assignment turned in but she is engaging in and understanding the curriculum. I have given up trying to reorganize my middle child’s bureau drawers. I can’t participate or volunteer at the kids’ school. Even if I had the energy, it is a virus swamp and no place for the immunocompromised. The things I normally manage, that are part of my normal rhythm as a mother, have to fall by the wayside.

Although my parenting has been restricted, I can still check in with my children. Thankfully, they tell me what is on their mind.  It pains me that I can’t engage with their concerns and fully protect them from the horror of what is happening to me. They see me and know that I suffer. I fantasize about having a superpower that would allow me to freeze time for them so that I could go off and get better without them having to witness the pain of treatment. In this daydream, I would return as basically my same self and we could resume our family life without this nightmarish interruption.

Early on, we bought them a book about a mother with cancer, a story told at a level that even my youngest could understand. He asked us to read it repeatedly for the first couple of months of my treatment. Two months later, when the book had lost its hold on him, he turned to me with a serious look on his face and said, almost accusing, “In the book, Sammy’s mother gets better faster than you.” My heart broke for what felt like the millionth time. A ten-minute story is so much easier to sit through than a year and a half of treatment. I wish, like him, we could just turn the page and make the time pass.

My middle child, the one who has been told repeatedly in her seven years of life that she looks just like me, expressed the most distress about my hair loss. The changes in my appearance that threatened my own identity also seemed to threaten hers. She did not want me to show my bald head in front of her friends. She urged me to get a wig. When she learned about my surgery, she asked if I would look like a man without breasts. My eldest, who is almost ten, confided her fears about her own body: she was afraid to get breasts because they might get cancer too.

But even snuggling and talking have their limits. The treatment makes me hypersensitive at times, making noise or multiple simultaneous conversations difficult to tolerate. My children are learning to have more slow and measured conversations with me, but, of course, this is not natural. The cognitive impairment of chemotherapy makes me an unreliable listener.  “Mommy, don’t you remember?” is a phrase I have heard that more in the last four months than in my prior ten years of motherhood, as I, in defiance of my usual acute memory, once again forget a friend’s name, a birthday party, or a project that somebody wanted to do.

An undeniable anxiety pervades our household, bringing our reactivity up in a multitude of circumstances. Our capacity is down, so my husband and I work to push things back to make space for the kids’ needs and concerns. We worked out with the girls’ school that they do not receive homework one night a week while we attend a family support group. In general, we have abandoned some of our usual focus on their schoolwork. The vulnerability of our situation makes our emotions raw. When my son wandered off for ten minutes at the science museum, our imaginations could believe the worst-case scenario more vividly than we normally would. We know too well that the bad stuff in life is not just what happens to other people.

What, I often wonder, is my goal as I parent through this time? How am I to help the children make sense of this experience? The best I can come up with is that it is my obligation to listen and be as honest and hopeful as I can. I learned, in the twenty months my brother was fighting this disease, that there is always something to hope for no matter what course the cancer takes. With my brother, I started by hoping for a cure and ended with the wish, once it was inevitable, that his death be peaceful and that he leave this world feeling the power of the love he had created while he was in it.

So this is an opportunity to teach them, in a vivid way, the importance of love, generosity, and hope. I have marveled with them at the kindness of the people who took me in and cared for me when our family had its initial crisis. I try to help them see the weight that is lifted as people bring us meals or visit and help with chores. I hope that, with our guidance, they can see how these acts of lovingkindness are fundamental to a community and that they will be eager to give to others when the opportunity arises. I hope they see that my appearance can change, but the love that I have for them never does. My love for them endures even in these circumstances, even when I am being beaten down by chemo side effects and the drugs that are meant to alleviate them. I hope that they learn about the importance of us sticking together as a family, as they watch their dad push himself to the limits to keep everyone going. I hope they learn how to live life with joy, because only if you have been in a difficult place filled with grief do you learn the gift that is health and normalcy to the point where it can bring you true contentment and happiness.

Tags: , , ,
Posted in Treatment | No Comments »

Missing My Old Self

03.11.2010

I have been hiding under a rock since my final chemo two weeks ago. My hardship comes from the realization that chemo #6 was a faux finish line.

On the one hand, I feel incredibly relieved to have completed the first event in what one friend called the Triathlon from Hell. (The other two events, of course, are surgery and radiation.) On the other hand, the effects of chemo are cumulative, so the side effects of this last treatment have been pretty harsh. I even got a new side effect: mouth ulcers. That left me with only one side effect gone unchecked on my oncologist’s potential side effect list. My fingernails never fell off. For this, I am grateful that there is no Chemo #7.

Psychologically, I feel like I am done with chemo. Chemo, however, is clearly not done with me. In moments where I start to feel good, I become elated and eager to return to my normal activities. I take a burst of energy and a lack of nausea as a signal that I have returned to normal. I delve into all the things I have put on hold, push myself into activities I have missed doing. Then I pay the price by getting sicker or more tired or both.

Last Sunday was such a beautiful day. The weather was beautiful so I went out with my daughters to a nearby school to run together. The sunshine, my girls, blue skies: it was glorious. Aware of my tendency to overdo things, I only ran for about twenty minutes, chatting and joking with the kids, coaching them on their form. When we got home, I was craving a coconut lentil curry I am fond of, so I went out, got the ingredients and cooked dinner. It was delicious, and so completely satisfying to once again make and eat my own food.

I know that doesn’t sound like a big day, but it was obviously way too big for me –– especially since I was trying to wean myself off of all of the anti-nausea drugs I have been on for so long. On Monday, I was nauseous and overtired and horribly out of it. I had to get all of the meds back into my system but nothing was working. It was one of the worst days I have had the entire four months of treatment. Obviously my body was telling me to slow down.

It’s frustrating. There are so many things I want to do. I am not temperamentally suited to the number of hours I have to log in my bed nor the fogginess of medication.

At the same time, I am having to come to terms with the realities of my upcoming surgery and radiation. I am actually not up to laying out the gory details of these at the moment, but suffice it to say, there are details of the long term side effects and permanent scars that I am having to adjust to.  I am having to face that my ideas about returning to my “normal” self are a little false. Accepting that I will not really ever return to my old self is very painful right now.

Reticence, if you haven’t noticed, is not my usual modus operandi. It’s weird for me to feel that way, but I have, as I said in the beginning, I am dealing with all of this by hiding under a rock. I realize my version of quiet is probably somebody else’s version of loud. I have moments where I am my usual chatty and happy self, but their timing and duration are hard to predict. They go as suddenly as they come on.

Tags: , , , , , ,
Posted in Treatment | 3 Comments »

@Chemo_Babe’s #CrankyCancer Rants

03.04.2010

I did my part to get Twitter up to the 10 billionth tweetmark today.

Call it TweetTherapy. Twitter is the new century’s scream room. The nice thing is, when you rant, some folks are actually sporting enough to cheer you on.

(Note to you twitterati, I marked my tweets with the hashtag #crankycancer and I will continue to do so if you want to hear more of my mad ravings about this horrid disease.)

For those of you who are still old school blog readers, here are a few of my #crankycancer tweets, grammatically revised for readability and numbered for your commenting pleasure:

1. The side effects of chemo have nothing to do with how effective it is. They are two different mechanisms: metabolism & angiogenesis.

2. God does not “give troubles to those who can handle them.” I was in a support meeting this week with people who had WAY more than they could handle.

3. Young adult cancer lit is too sassy/hip/ironic. And there is not enough about parenting through treatment, which totally sucks.

4. People kick/scream/moan/bitch thru treatment and survive. Others are wondrously soulful and die.

5. People don’t talk about the utter violence of cancer treatment. It hurts us and our bodies, but we tie things up in bows.

6. Cancer is not one disease but many diseases with a common mechanism. What works for one disease may not for another. Your radical vegan diet may cure your cancer but it may do nothing for mine. Just think of the issue of soy and different types of breast cancer.

7. So much of treatment is handled at home, alone, outside of the health care system. And the patient ed I have received has been a joke.

8. I know how lucky I am to be treatable. But can we make treatments more humane? Support research, not mythology.

9. If plastics have toxins, why do so many cancer organizations have little plastic bracelets to support their cause?

Posted in Humor | No Comments »