Anna's Book of Days

A common theme in my support group - and in every cancer support group in the world, I would imagine - is disappointment/anger/shock/horror at the insensitive reactions of others to our diseases. Clinical psychologist Susan Silk experienced this first-hand as a breast cancer patient, which led her to go on to develop what she called the Ring Theory. This is how she describes it in a wonderful LA Times op-ed: Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma...Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma...Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. Here are the rules. The person in the center ring can say anything she wants to ...

Today we met with Dr. Susan McCloskey, a radiation oncologist at UCLA to whom Dr. Hurvitz referred me. Both Drs. Funk and Hurvitz said that they thought it was unlikely that I would need radiation therapy, but they both said that they don't ever make the final call - it's up to the radiation oncologist (and me, of course) to decide. Radiation therapy is treatment with high-energy rays or particles that destroy cancer cells. Radiation to the breast is almost always given after breast-conserving surgery (lumpectomy) to help lower the chance that the cancer will come back in the breast or nearby lymph nodes. Radiation may also be recommended after mastectomy in patients either with a pre-treatment cancer larger than 5 cm, or when cancer is found in the lymph nodes. Radiation is widely considered to be easier than chemotherapy - I've even heard a doctor refer to it as "a walk in the park". But the truth is, in cancer treatment, everything has its cost. ...

Jennifer Merendino was diagnosed with breast cancer in 2008, five months after marrying her husband Angelo. In 2010 it recurred, metastasizing to her liver. In an effort to maintain contact with friends and family and to help them understand their struggles, Angelo, a photographer, started taking and sharing photos of their life with breast cancer. The photos can now be found on  his website , poignantly titled "The Battle We Didn't Choose".  The images capture the progression of Jennifer's disease, from tender and intimate moments of almost-ordinary life, to the pain and suffering of end-stage cancer, to the almost unbearable emptiness that Angelo clearly felt when she died in 2011. The "Our Story" section of the website tells of their journey together, tragically short, but very sweet. So much is made in the breast cancer world of surviving, survival, being a survivor. That's understandable - what else could give us hope? But because of that, I...

One down, eleven to go!

Seth and I spent hours on Friday morning talking through my fears for my treatment, and I cried more than I have at any time during this illness, including at diagnosis. He listened to my concerns and read the articles that I handed him and dried my tears, and ultimately said, "We need better information." I realized that he was right - we didn't need more information, but we needed actual data, not anecdotes. Even the articles from reputable sources were of limited helpfulness when they quoted doctors' opinions rather than facts, and many of them contradicted each other about which side effects were most likely to occur. But then I found the results of a National Cancer Institute study called NSABP P1 , wherein 13,000  women at high risk of getting breast cancer were randomly assigned to receive either tamoxifen or placebo. The primary goal of the trial was to assess the value of tamoxifen in preventing cancer, but it also included  a set of questionnaires to as...

Hormonal therapy is a very effective weapon with which to fight breast cancer; I was told from the start that I was lucky to be ER+ so that I could benefit from it. From the offhand way that it was mentioned by my doctors and others, I got the impression that it was sort of like a multivitamin, a pill that I would pop each morning that would keep me healthy. I didn't do much independent research about it because I thought I wouldn't be starting it until after I had finished my adjuvant chemotherapy in October, and I was trying to stay focused on the next step and not get ahead of myself. But last week Dr. Hurvitz said I should start immediately, not in October, so all of sudden hormonal therapy  is  the next step. And when I started doing my own research, I found that it is nothing like that innocuous multivitamin that I been picturing; many women suffer from side effects, sometimes very debilitating ones. The available information about side effects is not consistent, but man...

Estrogen has many different roles in a woman's body, including keeping her bones strong and cholesterol low, as well as improving her sense of well-being. Before menopause, most of the estrogen in a woman's body is made by the ovaries. After menopause, the ovaries stop producing estrogen, but smaller amounts of estrogen are still made in the body; a steroid produced by the adrenal glands is made into estrogen in fat tissue. Unfortunately, however, estrogen can also stimulate the growth of estrogen-receptor-positive (ER+) breast cancer, about 80% of all breast cancers. For this type of cancer, the estrogen receptor is like the ignition and estrogen is the key; when estrogen in the body attaches to the receptors, the breast cancer cells respond to signals from the hormones that tell the cells to grow and multiply. The more estrogen, the more cancer. Hormonal or endocrine therapy medicines are a systemic treatment for ER+ breast cancers. They treat these breast cancers...

Sometimes getting cancer feels like a failure, even though I truly don't believe that anything in my control - my lifestyle or my environment - caused it. Deep down, perfection has always been my goal, whether it was in my academics, my profession, or my personal life. Getting cancer is so horribly imperfect, such a huge, glaring flaw, the scars from which I will bear for the rest of my days. But even before my diagnosis I had accepted that perfection was an unattainable standard to hold myself to, and part of coming to terms with my illness has been learning to see the virtue in the flaws. Ernest Hemingway wrote in  A Farewell to Arms , "The world breaks everyone and afterward many are strong in the broken places. But those that will not break it kills." I can see now how the goal must not be to remain unbroken but instead to break and heal, break and heal, over and over, and to grow stronger each time. In a building, the welds that hold two pieces of structural steel to...

Today marks two weeks post-surgery, and it also is the first day where I've looked in the mirror and felt that my breasts looked almost normal again - or at least I can see how they're going to look almost normal, eventually. That won't be until after the permanent implants are in - these tissue expanders are quite strange looking and feeling, much firmer and stiffer than real breasts. I assume they'll improve a bit when I start getting fills; the first fill will be 50cc at the end of this month, and then we'll keep going until we get to my ideal size, which I doubt will take more than two or three fills.  When I saw Dr. Trott for my checkup on Moday, she said that she doesn't want  to do the exchange procedure (where they swap out the tissue expanders for the permanent implants) until after I finish adjuvant chemo in October; even though chemo did not affect my white blood cell counts, she doesn't want to take the risk that the chemo drugs could impair my ...

In everything that I read before my surgery, all of the consultations with surgeons and nurses, and all of the input from the women in my support group, I realize now that never truly got a sense of what this would actually feel like, physically. I was warned repeatedly that it would be painful, but I really haven't found the pain to be particluarly bad - in large part I think because I've kept my promise to Seth to "not be a hero". When I've felt the pain start to creep up, I've been quick to take my Dilaudid, Flexeril, and Percocet, very strong and effective drugs. I never got above a 3 on that 1-10 pain scale that the nurses were constantly asking me about in the hospital - I was accused of being too polite, but truthfully, it wasn't stoicism, I just wasn't in a lot of pain. They said I even woke up smiling in post-op. But still, it has been an intense, surreal physical experience. Through the days of my recovery, I've been trying to hone in on ...

I had my post-op follow-up with Dr. Funk today, the first time I'd seen since pre-op last Wednesday. Our main topic of discussion was my pathology report, which came back yesterday. It didn't show the pathological complete response that we'd been hoping for, but it was close - the remaining cancer was 7.5mm, 10 times smaller than when I was diagnosed, and my margins were "widely clear", meaning that there is no possibility of any cancer having been left behind. It also means that it's extremely unlikely that I will need radiation therapy, something I have been eager to avoid. I still am going to meet with a radiological oncologist just to make sure, but Dr. Funk was very certain that it wouldn't be necessary - and she was really happy about the results.  She also did a quick exam and was very pleased with how my incisions are healing and how my skin is looking. She said that it's going to turn out beautifully.  I won't see Dr. Funk again until ...

This afternoon I got my second and final pair of drains out, which makes me so happy! The drains were not as repulsive in reality as I had thought they might be, but the bulbs at the ends of them were bigger and bulkier than I had imagined - and I don't even like to carry change in my pockets because it makes me feel bulky. I had no clothes that I could wear with the drains in - I had to wear one of Seth's jackets to Dr. Trott's office. Plus it wasn't very pleasant to feel them bumping around down there every time I moved. But the best thing is just feeling that much farther along the road to recovery. 

I'm home! Finally. It feels like it's been so much longer than six days since I left. And I got to come home to Ike's sweet smiling face, so coming home has never felt better.

It is Day 4 of my recovery and I am still in the hospital, an unexpected and frustrating situation since most mastectomy patients go home on Day 2. However, I have been having mysterious fevers and my doctors don't want to let me go until they have figured out the cause and/or the fevers have stopped. Possible causes could be an infection in my lower lungs, an infection in my chemo port, or an infection of one of the surgical incisions. I'm getting two kinds of antibiotics intravenously, a lung treatment administered through an inhaler, and a topical ointment on my incisions. My guess is that they never will be able to determine the cause, but that the fevers will stop through one of the treatments or on their own. My  last one was yesterday at noon, 100.5. Since I've now made it more than 24 hours without another one, everyone is starting to feel a lot more comfortable - but tomorrow is still the very earliest I might be discharged, and it sounds like it might not be until...