Nearly a month has passed since I last felt compelled to write. You would think that’s a good sign- an indication that things are getting better, because I have nothing much to write about. But I think my silence is a better indication that things have turned in a more desperate direction, because I haven’t had any words to really say, other than “help!” And a one word e-mail would probably be pretty boring, even if it was excited by an exclamation…….
Actually, that’s not quite true. I have recently picked my poetry pen back up, and have written the first poem in quite a few years. It’s quirky that pain and loss has always creatively inspired me. I guess pain somehow reminds me of the dirtiness of my humanity, and the poetry is like feeling the grit of the dirt as I rub my fingers together. It’s the only tangible evidence of the stirring of my soul. Yet a trusted confidant of mine says that I still seem to be processing things in a very left brained, analytical manner. I’m still waiting for the glaring evidence that this cancer has blessed me, and yet I also know that it has………
I just finished the third week of seven of daily radiation (five days a week). As I expected with my fair and freckled skin, I began ‘burning’ after the first dose. A sister of mine, who is also on a journey with cancer, gave me some nifty cream to use to prevent radiation burns. It seems to work, because I’ve been able to keep the burn to a constant “pinkness”, but with 4 more weeks to go, and an increasing dose of radiation, I am biting my lip. Because I no longer have breasts, I am at even greater risk for burns because the radiation is not penetrating into deep tissue, and is actually being drawn to the skin through a bolus pack. Nearly all of us have experienced a 2nd degree sunburn, and it isn’t pleasant. But so far, I’m hanging with it.
The radiation itself doesn’t hurt. I go in to the cancer center in the morning, put my gown on, wait for them to call me back, lay on a table, and the radiation machine has a huge arm-like arch that rotates around me. The entire process takes about 10 minutes. The only way I even know that I am receiving the dose is when a red light comes on and there is a loud buzzing sound. They’ve been sensitive enough to place a lighted scene of a Japanese garden on the ceiling so that the patients have something to distract them for a moment. But even more interesting than that, there is an infra-red “cross” on the ceiling. It’s a small cut-out in the ceiling panels that allows the infra-red beam to display on the patient’s body, and the radiologists use it for precise alignment of the treatment area. But it is distinctly shaped like a cross- not an “x”, but a cross. We have a photo album of pictures of crosses we have taken during trips and vacations we have been on. It’s our unique way of commemorating not just our family outings, but also our faith. We call our album “The Way of the Cross”, and it includes the white cross at Donner’s Summit, a cross in a cemetery in Columbia (CA), a cross we spotted on a flag during a civil war re-enactment at Fort Tejon, and many others, including some crosses spotted on our recent cruise through the western Caribbean. How fitting it would be to include my infra-red ceiling cross in our book- it too will commemorate a journey. Maybe of a different kind, but one in which the entire family has shared.
I’m not looking forward to the two more cycles of chemotherapy that I have been asked to do. If all proceeds without complications, I will be done with radiation and will begin the chemo in late March. Dr. Patel recommends the same treatment regimen that I had the last two cycles. Those were pretty grueling. I’ve also undergone another biopsy of a different kind, but that proved to be just a scare, and came back negative. I’ve had a couple other health concerns that have put me on edge the past few weeks, but it’s not too big a surpass- my body has been through a lot in the past 9 months. It’s kinda hard to move forward when you’re still in the middle of treatment.
I recently attended a retirement party for several people at work. I felt obligated to go (in a good way) because the people at work have been so good to me through all of this. But if anything, it served to notify me that I am not yet ready to return to work. I didn’t even make it out to the van before I started crying. I was just so overwhelmed. I’m sure it’s hard for people to understand. I found a writer who I share a lot in common with (besides cancer). She really wrote candidly about how I too am feeling, and I’d like to just share some of her words:
” ‘You’re a miracle’, they say. ‘An inspiration to us all’. I hear this every day, just because the gray and shaky effects of my cancer therapy have dissipated. The treatment, which turned me into a Holocaust victim, is confused with the illness, which, at the point I am now, has no visible symptoms. I look well. I have survived a bone marrow transplant. ‘How are you?’, I am asked, many times a day………I don’t know how I am…… Everyone asks me and my family if the bone marrow transplant was “successful”. They want to know if the cancer is gone, if “they got it all”. Often, they cannot hear the answer when we give it. The answer is that a distant metastasis always reoccurs. Reoccurrence is inevitably fatal. The bone marrow transplant has prolonged my life, prolonged the treatment-free time, not saved me. I and my family live daily with the (more than remote) possibility that I am dying……. Preparing for death is as inefficient as preparing for what we in San Francisco have come to call “the next Big One”. We mean the Earthquake which will bring the city to its knees. Though we all know how to turn off our gas lines and strap our hot water heaters to the wall, how to shore up our foundations and teach our children to “duck and cover”, the truth is we won’t be ready. But we try. Recently, in my own preparation, I asked a mutual friend of my ex-husband to talk with me about how my children might manage with him as the lone, surviving parent. “Oh, you don’t really think that’s going to happen do you?” she was quick to reassure me, thus depriving me of the information she had about my children’s future. “You didn’t go through all that bone marrow misery for nothing. You are going to be just fine”. The subject changed, and knowledge of my own foreseeable death slid away…from her, not from me. I don’t think it ever slips away from me. I am terrified of capsizing. Cancer will kill me. It will sneak up on me, make microscopic but lethal invasions into tiny parts of my body without my even knowing it. And as it happens, I will be looking healthy………..” (Christina Middlebrook, “Sailing” in Art. Rage. Us).
I appreciate Christina’s writing because her essay is interlaced with her metaphor of sailing. Cancer must inspire metaphors of the ocean. In terms of cancer, the only thing that separates her and I is staging. She has Stage IV cancer- I have Stage IIIb. She is already in the swirling eddy, while I am at the brink, looking in. Really, the only difference between Stage IIIb and IV is time. If my cancer had not have been caught as early as it was, I am certain I would be Stage IV, as so many women diagnosed with IBC are. And although that razor sharp edge gives me a slight advantage, a little more hope, I’m still a lot closer to that vortex than I want to be. Because all the lymph nodes removed from my axillary region showed evidence of once having cancer, the likelihood that the cancer spread beyond that is fairly substantial. The only good part of the picture is that the cancer evidently responded to the chemotherapy, and we can find hope that those ‘escaped’ cancerous cells were also killed. But all it takes is one living cancer cell…….and time. So, I am counting the days until I am done with treatment. But I’m also terrified to be done with treatment. It has served as my “safety net” for the past several months. Without it I am defenseless. And yet, I am never truly without defense when I belong to Jesus.
I am anticipating a difficult time ahead as I transition from being in treatment, to being in “remission”, as I return to work and try to re-learn how to relate to people, finding a balance between being real and not being all about cancer. It’s a huge task- the emotional healing. And it’s one I have begun to work on, but know will take much longer than I’d like. Us cancer patients don’t just wake up one morning and declare that we’re cured. Cure is a process…….it takes time…..and it doesn’t end just because treatment ends. And even “remission”, although a less boisterous frame of reference, has to come through a process of re-developing trust with one’s body. In many ways, I feel like I have come full-circle. Many of the feelings and struggles I am having are reminiscent of those I experienced just before my diagnosis- fear, isolation, frustration. Trying to live yet coming to terms with death at the same time is a precarious task, and one that is often forced to be carried out alone. But I continue on, in full faith that God is at the helm, and knows exactly how I feel and what I need.
I store my breasts in a box at night.
Left one, right one, upside down one.
Sometimes upside down for days at a time.
I once dreamt of rolling over in bed at night
And then the weeping would come.
But ironically, it happened when I couldn’t-
A different matter entirely.
Sometimes it seems the dream is nothing more than anxious rebellion.
Aged, balding men with their pot bellies and stick legs haunt my mind.
It’s almost amusing, my barren chest.
I also wonder about self consciousness- the irreparable harm it does to the soul.
Deeper still, it has been a long time since we met in this place.
I mount my lover’s soul, attempting to spread my wings with pride.
In darkness we express the musings of love,
But even the slightest touch of light reminds me of their reckless abandon.
Like an angel that has fallen from a glorious heaven
In wingless despair my fetal heart weeps.
The water is indeed too deep
So I jump out with a shiver, somehow intended to shake off the tragedy at hand.
If I keep it in a box, my determination remains intact.
Just to make sure it stays shut, I tie it neatly with a bow-
The thought of the snail, slimy slug of a creature
Leaving behind a residue evidence of it’s path
Is all that connects me to my cancerous box.
~Aimee Kristine Shaw