Well now. It just occurred to me that the featured image I chose for this article is a quote from someone who died of breast cancer. Deep breath. Onward and upward.
It has been ten days now since I completed my last radiation therapy treatment for breast cancer, and I am sitting here nursing some pretty severe radiation burns. For me, radiation therapy has been by far worse than chemo. Chemo was pretty gentle, like being wrapped in a cloud, medicated against the possible onslaught of side effects. There were foods I couldn’t, or wouldn’t, eat. I napped a lot. I worried a whole lot about germs. But even the treatments themselves were almost pleasant: once a week or once every two weeks, in the care of the kindest and gentlest of nurses who were always bringing tea and blankets, while I laid back in a recliner, reading, writing, napping.
In opposition comes radiation therapy. It was every single day, and because not everybody everywhere has radiation therapy equipment, it was just a little bit more of a drive. The radiation techs were nice enough, for the 30 seconds or so I spent with them at each session. But my primary relationship was with a machine that circled my body, whirring and clicking, stopping here and there to send invisible beams into destroy any cancer cells in hiding, along with some health tissues that happened to be in the way. Its damage was invisible and innocuous, as the first weeks slid by with not even a pink sheen to my skin. But still, radiation made me far more tired than chemo had. Or should I say it was a different kind of tired. Chemo made me want to nap. With radiation, I would be hit by this sudden weakness. With chemo I’d get the wet cement sliding into my extremities, making me feel heavy and lethargic, but with radiation my legs turned to shaky jelly.
The burns just started appearing in the last week or so of therapy. My doctor kept telling me: it could get worse. It could blister. Then finally the big secret: it will continue to get worse for a week or so after radiation is over. And it did, as the pink turned to red, then to a dusky black. The skin peeled through three layers before starting to reach a color that wasn’t deep red. I have a really large radiation field (I measured the front part of it, 146 square inches if math hasn’t fallen to my chemo brain), because every single one of the lymph nodes they tested had cancer in it. The area most severely burned is on my side, under my arm, and underneath where my breast used to be.
But my doctor assured me it would be better after about two weeks. So I am waiting.
I was diagnosed with breast cancer in November 2016. I’d had a routine mammogram, and had been called back because there was something odd. They wanted to do a second mamma and ultrasound. I didn’t really think anything of it. I honestly thought I was immune to breast cancer, because I’d breastfed five babies for extended periods of time. My mother had had breast cancer, but she’d had only me and I’d been bottle fed. And besides, my mother had made breast cancer look like a walk in the park. She’d had a lumpectomy, no lymph node involvement, and localized radiation therapy. She’d got a mild “sunburn” from the radiation. No big deal.
I was at the clinic and out of my car before it struck me that something important might be going on here. When you cross the street from the parking garage to the clinic, you enter a walkway that goes underneath the building. I slowed at this point, suddenly feeling the gravity of it. I passed the Urgent Care Clinic, turned before Emergency, and went through the front doors to the medical offices.
I had the second mammo, then was told to wait while the doctor looked at it. While I waited I went to the bathroom, and I caught that slight hospital scent. I have always liked hospitals. Despite having sat with both my parents in hospitals as they died, my first and overwhelmingly primary association with them is the birth of my children, and my grandchildren. To me, they were life over death, and the scents and sensations associated with them. Well, it’s a good thing I like hospitals, I thought to myself, because I might be having to spend a lot of time in them.
I was ushered from mammography to ultrasound, where the tech and I made light chitchat while she examined my breast. Then she also told me to wait while she got the doctor. He came in and showed me the shadow on the ultrasound, and explained very kindly that I should get a biopsy done as soon as possible, referring me back to my primary physician for arrangements.
I had a very special primary physician at that time, Dr Amal Sawires. I live in Castro Valley, California, which has a major medical center as well as probably hundreds of doctors. But rather than refer me to the hospital there for the biopsy, Dr Sawires referred me to the Carol Ann Read Breast Health Center in Oakland, because the local hospital required a referral from a surgeon and I might not even need one of those. Carol Ann Read was also a wonderful place, which I’m sure my doctor knew, with an entryway that included waterfalls and music, understated decorations and an atmosphere designed to put your fears at rest.
I waited for the results of the biopsy, not really knowing what to think. I was still not really convinced that I could actually have breast cancer. The following week I received a call on Monday, asking me to come in to see my primary care physician on Wednesday. Umm, no, I said. I am assuming that if she wants to see me that it is bad news, and I don’t want to wait two days to find out. The scheduler spoke to the doctor, apologized, and I was seen in a couple of hours.
My daughter, Johnna, went with me to the appointment. Johnna teared up when Dr Sawires said that I had breast cancer, but I didn’t. I’d moved from “it’s impossible,” but I had only made it as far as “it’s no big deal because my mother made it look like a walk in the park.” Then Dr Sawires gave me the next gift on this journey. Rather than refer me to a local doctor, she referred me to breast surgeon Dr Lisa Bailey, in Emeryville. Not only is Dr Bailey an excellent and empathetic surgeon, she is associated with Epic Care Cancer Care clinics, with offices through the East San Francisco Bay Area. Through Dr Bailey, I became a patient of plastic surgeon Dr David Chang. I haven’t had reconstructive surgery yet, but one thing I do know is that he is an absolute wizard at pain mitigation. He was present at my mastectomy to place a tissue expander, and gave me a three-day local anesthetic. I had remarkably little pain after the mastectomy.
My cancer had been staged originally at an optimistic Stage I. After an MRI, it had been moved to Stage II due to its size. During surgery, eleven lymph nodes had been removed, and every single one of them had cancer in it. That was my wake up moment. “Well, that’s not good!” I said to Dr Bailey. No, it’s not, she agreed. I was moved to Stage IIIC metastatic breast cancer, the most advanced stage you can get before Stage IV, in which the cancer has migrated past the breast and lymph nodes into other parts of the body. Stage IV is considered incurable.
So I moved on to the next phase, the PET scan, which uses radioactive glucose to light up cancers in your body. I’m not going to lie, I was really worried about this one! I felt as though the dominoes had been falling one by one, that every time they looked for cancer, they had found it. My non-religious older daughter was posting prayer requests on Facebook for me. And thank God, the PET scan was clear. The cancer had not spread past the lymph nodes.
For chemotherapy, I moved to the Epic Care office in Castro Valley, just blocks from my home, where oncologist Dr Dao took care of me. By this time I was wondering if hugging patients was required of Epic Care doctors, although my radiation oncologist disabused me of that notion. I had twenty weeks of ACT chemotherapy. My hair fell out, very unpleasantly. I’d wake up in the morning with my pillow looking like it had been in a fight with a wild animal. What was left was so sickly looking that I just had my daughter shave it off. My fingertips dried and cracked, and my fingernails withdrew from the sides of my nail beds. I received a Neulasta OnPro with each AC treatment (Adriamycin and Cytoxan), which kept my white blood cell count up to prevent infection. A couple of strains of flu swept through the Bay Area around then, and they arrived in my house. I developed a true OCD around this, sanitizing everything and hiding in my room. But eventually my 16-month old grandson caught it, and there was no avoiding it there. He and his parents live with me, and I could not resist those little arms when they reached up to be held, or turn away from the little kisses. So I did get sick, and I stayed sick for quite awhile longer than everyone else, but I survived. I got prophylactic antibiotics and cough medications I didn’t even know existed from my oncologist, but I never had to be hospitalized.
I have four little dogs who are my constant companions, and many people took it upon themselves to tell me that I would not be able to sleep with them while on chemotherapy. One friend whose daughter was having chemo said her doctor had told her not to touch their dogs! But I asked my doctor, and he said that’s fine, you can take care of your dogs. So I did. I used latex gloves when I cleaned up after them, but I slept with them, I hugged them and I kissed them, and I lived to tell about it.
It is my experience that every oncologist has a different set of rules for his or her patients. If I listened to everything everybody had been told I would have sat in a corner twisting my hair, not doing or eating or drinking anything. So I just went by my doctor’s advice. I think it is important to note that the Neulasta OnPro did a great job in keeping my immune system working. Most of my friends undergoing chemo elsewhere did not get this treatment. Why I don’t know. If you are going to have chemotherapy, ask about it. Without it, I am pretty sure I would have been far sicker.
So now I have finished radiation therapy. Because my tumor is hormone receptor positive, I have started taking hormone therapy, or rather anti-hormone therapy, which will continue for five years, maybe ten. I know several people whose breast cancer has come back between years five and ten. One of them, my long-distance chemo buddy, passed away before I finished my treatment. I am “cancer free,” but I’m not sure what that means exactly. The cancer has been cut out, attacked with chemicals, and zapped with radiation. My body is being stripped of hormones to discourage its growth, but is it still lurking? Breast cancer comes in two types: ductal and lobular. Lobular cancer is the sneak-attack variety. Instead of growing in clumps, it grows in rows of cells, often evading detection until it becomes a sheet of cells. I could have looked further into this. I could have asked if that means that there are little rows of cells hiding in my body. But I didn’t want to. Maybe one day yet I will ask.
I only finally asked my oncologist about my prognosis because my daughter, Libby, wanted to know. And you know, I can’t remember exactly what he said. There was a 20 to 40 percent chance of reoccurrence, but was that with treatment or without? My chances of surviving five years or ten years are both better than even. Was it 65 to 75 percent for five years and 55 to 65 percent for ten years? But did that mean with treatment or without? In any scenario, though, those figures make “cancer free” seem kind of questionable. “In remission” is the correct term. So that is what I am now. I am in remission.
At my last appointment with my oncologist, he said I could have my port removed. This is a device implanted in your chest with a tube going straight into a main artery. They use this to administer strong chemotherapy drugs, which would burn your skin if they were given through an IV. My chemo nurses had said that because of the advanced stage of my cancer I’d probably have to keep the port for a year, so I was a little taken aback by the idea of having it taken out now. Having it removed is a simple in-office procedure, but having it placed is an in-hospital general anesthesia deal, which in my case left some pretty gruesome wounds afterwards. I asked my doctor, and I think he said that most reoccurrences of cancer occur in the first year, but I’m not sure that’s what he said because I try not to listen too hard to these things. But if he suggested I have it taken out, why should I be the one to plan for failure? I have decided I will have it removed once these burns are healed.
There is so much, a whole universe of things that cancer has brought up for me. It has apparently made me think about dying, because I suddenly found myself collecting books on the subject. It has been financially challenging, and when the disability insurance ran out I had no choice but to take retirement in order to keep some money coming in. So now that I am cancer free, what do I do with my retirement? It doesn’t pay enough to really live on and I am draining my small savings. But I still have a major surgery coming up in four or five months. Do say, oops, changed my mind, and try to go back to a real job? How would that work? Or do I get one of those part-time retiree jobs? Should I write a book or two, and if I do, will it sell? Should I get my butt in gear and make something of my self employment opportunities? Or should I just freeze up, paralyzed by the toll the journey has taken on me?
This isn’t just me in this position. This is any number of people whose lives have been thrown off course by disaster — a devastating illness, or a hurricane, death of a loved one, desertion by a spouse. Life is fragile. This makes me anxious, and yet I fight it off. This moment is this moment. I’ve alive. I have promise. It is good. I think my biggest fear is of making stupid decisions, of turning right where I should turn left, or worst of all, just sitting down in the middle of the road and failing on that account. My life philosophy has always been that if you stop short of your goal, or get lost, you will get shoved back onto the path. Well, I’m here. I don’t need to be shoved. Just yell, God, or whisper even: “This is the way. Walk in it.”
Well, I will be happy to share with you more of my confusion … err, I mean seeking … in future posts. Hopefully I will find some answers to share, and I’d be more than thrilled to hear your own answers. Meanwhile, thank you for walking with me on this journey. It always helps to know you are not alone.
In my internet schizophrenia of the last few years, I have written a lot about my breast cancer journey in a previous blog, if you are interested in reading more about it. This is a kind of a summary, and life and blogging will go on from here. 🙂