Anna's Book of Days

I read this piece yesterday by a therapist named Tim Lawrence, and I thought of all the people in my life who struggled to say or do something helpful to me after my diagnosis, or who said nothing because they didn't know what to say. It is about grief, and grief is exactly the emotion that I felt at that time. I grieved for my lost health, for my happy life, for everything that I knew I would have to give up to cancer. Grief is scary, and though I was disappointed I understood why some people stayed away or stayed silent. I had failed to reach out to those in grief before, out of fear of saying the wrong thing. But now I know the truth about grief, and it goes like this: Our culture treats grief like a problem to be solved or an illness to be healed. We’ve done everything we can to avoid, ignore, or transform grief. So that now, when you’re faced with tragedy, you usually find that you’re no longer surrounded by people — you’re surrounded by platitudes. So what do we offer instead...

18 down, 0 to go!!! We made it.

Two years ago this week, the owner of my company, Mark Benjamin, was killed when his plane veered off the runway into a hangar housing another plane at the Santa Monica airport. The plane that he hit had just been filled with fuel, and exploded immediately upon impact. Three others, including his son Luke, were also killed in the accident. I had worked for Mark's company for more than thirteen years at the time of his death, and he was involved in every detail of its operations, right down to selecting the tile in the restrooms and the type of coffee in the kitchen. Since I had started working full time in our office, about a year before, I saw Mark almost every day. He always said hello, asked me how I was, wanted to know what I was working on and how it was going. We spoke dozens if not hundreds of times. But after his death I realized how little I knew him, and how little he knew me. In his obituaries and eulogies, I saw a man who was much warmer and deeper than the man I ha...

17 down, 1 to go!!!

Dr. Hurvitz told us today that the results of our study will be published next June, and that she'll be able to share the preliminary results with us next January after the last trial patient (#444) has her surgery. If the Arm B (test) patients have equivalent or better outcomes than Arm A (control) patients, Roche will probably then submit to the FDA for approval of TDM-1 for early-stage patients. I will be so excited if this treatment becomes available to everyone - the amount of suffering that would be avoided blows my mind. 16 down, two to go!

One year ago today I was diagnosed with breast cancer. In that time I have had four surgeries, fifteen cycles of chemotherapy, 181 doses of tamoxifen, five biopsies, four mammograms, two PET scans, one MRI, six echocardiograms, and countless exams, ultrasounds, blood draws, and secondary medications. I have shed many tears and lost many hours of sleep. When I was first diagnosed, I couldn't believe that it had happened to me. Ridiculously, I kept thinking that I wasn't the kind of person who gets cancer. But the terrifying truth is that breast cancer can happen to anyone. It is the most common cancer in American women; about one in eight women in the U.S. will develop invasive breast cancer in her lifetime. An estimated 232,670 new cases of invasive breast cancer will be diagnosed this year. And breast cancer is the second-leading cause of cancer death in women, after lung cancer. The good news is that breast cancer survivorship has tripled over the last 60 years, and there...

The idea that creativity and suffering are inextricably linked - that creativity in fact demands suffering - is age-old and widespread. Aldous Huxley wrote in Antic Hay, "Can an artist do anything if he's happy? Would he ever want to do anything? What is art, after all, but a protest against the horrible inclemency of life?" Artists from El Greco to Gaugin to Marvin Gaye have echoed this thought, and the list of creative geniuses who have tortured themselves in one way or another goes on almost endlessly. I know exactly when I first grasped this concept. It was 1993, and a wonderful cello teacher named Milly took me and a friend to see the French movie Tous les matins du monde. It's about a famous viola da gamba player, Sainte Colombe, who shuts himself away from the world after his wife's death, and tragedy ensues. I am sure there was much about the movie that went over my 13-year-old head, but I do remember thinking as we left the theater that perhaps Saint...

15 down, 3 to go! I'm 75% done with my adjuvant treatment, and 5/6 done with my overall treatment. The end, which once seemed so far off as to be invisible, is really in sight now. The last couple days my skin has been drydrydry, which is not fun - but in the scheme of things, it's not so bad.  I'm going to see a dermatologist tomorrow to see if there's any industrial-strength moisturizer out there that they can give me.

14 down, 4 to go! I'm feeling great. Other than the usual skin troubles, which come and go, I'm not having any side effects. My energy is high too, which is a blessing as I'm extremely busy at work and running around after Ike at home. And I'm so happy that I'll be done with treatment in less than three months! ~ Our neighbor - the one who had to sell his house to pay his medical bills - died on Saturday morning. We knew that it was coming - we had seen a truck parked in front of the house a few weeks ago labeled "Hospice Care", and our landlord, who was close friends with him, told us last week that he only had a few days left. Still, it was upsetting. We could hear his three children playing together that night, too young to really understand what was happening, and somehow the normalcy of their talking and laughing - so innocent and free from sorrow - was almost sadder to me than if they had been crying. I feel heartbroken for his wife - ...

I had lunch the other day with a lovely woman, E., who is also a patient in the Kristine trial. She had just finished her neoadjuvant chemo and was preparing for her double mastectomy - exactly where I was eight months ago (only eight months? it feels like eight years!). We talked about everything, from the supplements I took to what tissue expanders feel like to hormone therapy. What I think was weighing on her most, however, was not knowing how her surgery and recovery would affect her young son. I gave her my perspective, although I know a nine-month-old is very different from a three-year-old. I have felt grateful from the start that Ike was too young to understand what was happening to me. He loves me, of course, but he adjusted easily to my absence. At nine months, a child is still less than halfway to understanding object permanence - he still thinks that when something disappears, it no longer exists. By contrast, a three-year-old has the emotional capacity to miss someone...

13 down, 5 to go!

Some women in my support group were talking last week about feeling like we have a lot to be grateful for and a lot to complain about. One said that on the anniversary of her diagnosis, she was happy to be alive, and to get to watch her sons grow up - but frustrated to still be in pain from her surgery, and to not be done with chemotherapy. Another said that she was simultaneously grateful for and exhausted by her daily radiation therapy. Personally, I know I'm fortunate to be triple-positive, because it means I can benefit from Herceptin and Perjeta and tamoxifen - but it's hard not to be jealous of the triple-negatives who had six cycles of chemo and were done - when my treatment will go on for years. I suggested that we could call this feeling "whankful" - whining, but thankful. It's a funny word that gave us a laugh, but the ambivalence that it describes is very real. This is the paradox of cancer - you know you should hate the disease and love the treatment, ...

I've been looking forward to #12 as a milestone - I am now halfway done with my adjuvant therapy, and 2/3 done with my total treatment. Only six infusions left!

"I have learned that I never really knew what to say to others in need. I think I got this all wrong before; I tried to assure people that it would be okay, thinking that hope was the most comforting thing I could offer. A friend of mine with late-stage cancer told me that the worst thing people could say to him was “It is going to be okay.” That voice in his head would scream, How do you know it is going to be okay? Do you not understand that I might die? I learned this past month what he was trying to teach me. Real empathy is sometimes not insisting that it will be okay but acknowledging that it is not. When people say to me, “You and your children will find happiness again,” my heart tells me, Yes, I believe that, but I know I will never feel pure joy again. Those who have said, “You will find a new normal, but it will never be as good” comfort me more because they know and speak the truth. Even a simple “How are you?”—almost always asked with the best of intentions—is bet...

There is a woman whom I've never met, but who is friends with some of the same women I am friends with. She had early stage breast cancer, like me, and had a double mastectomy, like me. About a month ago, she found out that she had a mass in her liver, and now they think it's in her bones too. She is the first person in my breast cancer world whose cancer has metasticized. She may be the first person in my breast cancer world to die. She probably won't be the last. I think most people don't understand the sharp divide between early and late stage breast cancers - I know I didn't prior to my diagnosis. Early stage breast cancer is local, meaning it occurs only in the breast, and it is highly curable - as high as 98% in some cases, according to some sources. Late stage breast cancer is metastatic, meaning it has spread to other parts of the body, and it is incurable. Chemotherapy and other interventions may be able to keep it at bay for months, sometimes even year...

Ten days out, today is the first day that I really feel myself again - strong and energetic - since my surgery. I didn't expect it to take anywhere close to this long to bounce back as everyone had told me what a minor procedure the exchange was. And it was, compared to the mastectomy - I haven't had any real pain in over a week and my incisions are completely healed. But it really took a big toll on my energy. It may have been the anesthetics or simply the trauma to my body (Dr. Trott says it's like getting in a car accident) - but one way or another, I've been tired . I went back to work on Tuesday but I felt so exhausted and miserable that I decided to take the rest of the week off, and I'm so glad that I did - I feel like I'm going to be in a much better place this Monday after getting fully rested this week. Seth and I just took a long walk, which was restorative, and I can't wait to spend the weekend playing with Ike.

I got out of surgery around 3:00 this afternoon and was home by 5:15. The surgery took longer than expected  because Dr. Trott had to do more pocket work than she anticipated - but she called the results "spectacular", so presumably it's worth it. I plan to live with these implants for a very long time, so I definitely wanted her to take all the time she needed. I woke up woozy but otherwise unaffected by the long anesthesia - the nurses were very impressed. Seth brought me home and settled me comfortably in bed with the cat and two Percocets, and now I'm just waiting for them to kick in and put me to sleep. The pain is very tolerable - the greatest discomfort was actually in my arms (from being in crucifix position for seven hours), but that's wearing off. I can feel my internal sutures, but they're not bad - and I can't feel my incisions at all, which I guess is the silver lining of the loss of sensation in my breasts from the mastectomy. My chest is com...

I'm getting my Perjeta as I write - 11 treatments down, 7 to go! Treatment has become so routine for me - it's funny to think back on my first treatment, when I packed my chemo bag as carefully as if I was going into battle. Now I hardly give it a second thought - we're in, we're out, and life goes on. I got my favorite chair today, and it's crystal clear out, so the view is perfect (that's the ocean in the distance): When I saw Dr. Hurvitz this morning, I asked her about a study that was published recently out of Sweden that found  that increased coffee consumption is associated with significantly smaller invasive breast tumor sizes, a lower proportion of ER +  tumors, and improved disease-free survival among tamoxifen-treated women with ER +  breast cancer. Specifically, the study showed that caffeine (as well as caffeic acid) mimics the actions of antiestrogens and modifies major growth regulatory pathways, resulting in impaired cell-cycle ...

I've been so busy with work and Ike, this is the first chance I've had to post in weeks. It's nice to be so fully occupied with living my life that my health and my treatments and my disease don't even cross my mind. My infusions are starting to seem more and more like just a blip on my radar screen, and I pop my tamoxifen each night without really noticing it. My skin is still irritated from the Herceptin and Perjeta, but I seem to have found a way to at least manage it (by cleansing with coconut oil only and then moisturizing the hell out of it). Dr. Hurvitz gave me a referral to a dermatologist, but I haven't called her - to be honest I just don't want to see another doctor. Ever. For the rest of my life. But for now, that's not realistic. I saw Dr. Trott today for my pre-op appointment in advance of my exchange surgery, which is scheduled for May 19. I'm excited to get my new boobs, and I'm even more excited to get done with reconstructi...

Having breast cancer - or any serious health problem - can have enormous costs, everything from the existential right on down the line to the physical, emotional, relationships, time, lifestyle, and financial costs. I've written about some of the others, but I haven't written about the financial costs because I am one of the fortunate few who have both excellent health insurance and the means to cover the out-of-pocket expenses. Even so, when we were working on our tax preparation recently, I was shocked to find that we had about $5,000 of unreimbursed medical expenses in 2014, and I expect that we'll have at least that amount, if not more, in 2015. That, despite having every cent of the hundreds of thousands of dollars of chemotherapy drugs I've received paid for by Roche, and hundreds of thousands of dollars of other costs covered by my insurance. My hospital bill for my surgery was $137,000, and that was only the hospital - it doesn't even cover the services of t...

I had my second PET scan on Monday (actually my third if you count one that I had in 2006). I just got the results - negative! So now I am officially cancer-free.

I completed Treatment 9 yesterday, and with that, I am officially halfway through treatment (neoadjuvant and adjuvant combined) - nine down, nine to go. I find recognizing these milestones very comforting, even if they're somewhat arbitrary. Last cycle I experienced some skin irritation on my face, particularly my eyelids and forehead, even though I've been moisturizing like mad. It doesn't look too awful - at least when I'm made up - but at times it's been very uncomfortable. Dr. Hurvitz said that it's not unexpected given that Herceptin and Perjeta are blocking HER2. HER2 stands for Human Epidermal (as in epidermis, or skin) Growth Factor Receptor 2, and it's a protein involved in normal skin cell growth. Maddie told me to try taking Benadryl at night and Claritin in the morning to see if antihistamines can calm it down. She's also referring me to a dermatologist, who might have some other ideas. I hate to complain - since of course it's wa...

Last night I finished my first bottle of tamoxifen, which means I've been taking it for 30 days. Only 59 bottles to go! It's probably better not to think about it that way for a while.  What is nice to think about is that so far I have had no appreciable side effects. It's too soon to say that I won't ever experience tamoxifen side effects - based on anecdotal evidence, it seems that many women don't start experiencing side effects for a few months or more after starting the drug. But others start right away, so at least I'm not in that group. I've been trying to exercise as much as I can (not always an easy feat now that I'm back at work full time), which Dr. Hurvitz says is the best way to stave off some of the more common side effects, such as bone density loss and mood swings - but to be honest, as with so many parts of this journey, I think a lot of it is just luck. I hope my luck continues to hold as more and more of this drug builds up in my sy...

The majority of women who elect to have post-mastectomy reconstruction with beast implants have a staged approach using tissue expanders. A tissue expander is a temporary device that is placed on the chest wall deep to the pectoralis major muscle. This may be done immediately following the mastectomy - as it was in my case - or as a delayed procedure. The purpose of the expander is to gradually create a soft pocket to contain the permanent implant, allowing the body to adjust over time. Tissue expanders are available in a variety of shapes and sizes to suit different body types and sizes. At the time of the initial post-mastectomy reconstruction operation, when it is first positioned on the chest wall, the tissue expander is partially filled with saline - for me, 200 cc's on each side. (As a side note - tissue expanders and implants are always measured in cc's, which is totally unfamiliar to most of us, who are used to talking about breasts in cup sizes. 200 cc's is a ...

I'm in treatment alone today - Seth is home sick with a bad cough and a fever. He wanted to come anyway but I wouldn't let him - in addition to endangering his own health, he could infect others in the treatment room, as many cancer patients have compromised immune systems. I miss him but it's not so bad - I find my infusions to be curiously relaxing, a few quiet hours out of our busy life. I saw Maddie and Dr. Hurvitz before my infusion; they both said I was doing well although they were a little concerned about my weight, which is down almost 10% since I started treatment. I just laughed when they said that - I'm finally back at my pre-pregnancy weight and I'm very happy about it! They can worry if I lose another 10% (not likely). I also talked with Dr. Hurvitz about my upcoming PET scan, which is scheduled for April 6. She ordered the scan in consultation with Dr. McCloskey, the radiation oncologist I saw last month - the two of them  want to make e...

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...