An odd name for a blog on cancer.
When I learned I had BC and needed a mastectomy my initial reaction was: get it out, get it out now, just take off my breast and lets get this therapy going. But we had to wait for all the tests to come back. This didn’t really set well with me, we know it’s cancer, we know I need a mastectomy, just do it, the rest of the tests don’t make a difference here…get it out now!
Then I went to the Breast Surgeon and she said and I will paraphrase:
You are a Chef think of it this way: you are baking a cake and you get all your ingredients together and you are missing one or two ingredients. You are going to need to go get them, go to the grocery store so think of this surgery the same way, we don’t have all the pieces together to move forward, so “the cake is not ready to bake yet!”
I wonder if I am carrot, chocolate or vanilla cake?
I went to see the Breast Surgeon. She did a short exam then sat down with me with a simple drawing of the ducts in my breast and explained how the BC developed, what I had and what the next steps would be. It is invasive ductile BC, which means it starts in the ducts and then breaks out and “invades” the breast tissue to form the lump. She had written down the side 5-10 years and explained that it probably had been growing for that long before the lump grew.
She went on to discuss the therapies I’d need: mastectomy, removal of lymph nodes, reconstruction could be done immediately after mastectomy, then chemotherapy (to be determined by Medical Oncologist) and potentially radiation therapy (determined by the Radiation Oncologist. I was a deer in the headlights. So much information, so many decisions so many doctors to see. What was my first question…OMG, we are scheduled to go to Japan next week should we cancel? Go, they said, another week or two won’t make any difference in therapy. You’ll come back in the week after you come home and we’ll schedule surgery.
Then a nurse swept in with a white binder, sat down next to me and opened it up. My appointment with the Plastic Surgeon was already set up, as well as my return appointment with the Breast Surgeon, there was information about the Cancer Care Team, everyone’s card with phone numbers, a video detailing exercising after surgery, everything set and ready to go.
I got home and burst into tears. Part sadness and fear, part depression, part relief there was this team that was going to get me through this step by step, holding my hand, guiding me until my life would get back to normal. What did my future normal life look like….
Then this little voice inside me said, this has been growing for 5-10 years, whats wrong with this picture. I stopped crying and realized we really can’t adequately diagnose BC in a timely fashion if this has been growing inside me for 5-10 years. I have been faithful in getting yearly exams at the doctor, annual mammograms and doing self exams at least every other month. And it was missed.
I didn’t want long chunks of hair falling out from Chemotherapy, so I had Brent cut it really short…those Wertheimer genes, I look like Marylyn and Mom!!!
In Kyoto we visited four shrines and there were hundreds of kids on school trips. Three small groups stopped us and asked us question in English to practice as part of their classwork. Here is one with me (with hair) Tom and a group.
I went home from the biopsy knowing I had Breast Cancer (I’m just going to say BC from now on) and was told I needed to see a Breast Surgeon asap. Who? There are many of them at Maggie, how does one choose. Before I left the Imaging Center they asked if I would like a Patient Navigator to help me get through all of this. I am usually not one to ask for help, but immediately said yes. Bless her heart she called me the very afternoon I came home. I asked many questions which she answered as best she could but when it came to which surgeon, she could not say which one to chose. I understand they cannot be preferential heaven forbid they suggest one I dislike and decide to sue them…but for heavens sake throw me a bone here, I am drowning. That’s how I felt, all alone, drowning far away from the shore, nothing to grab on to and no one around to help me. She finally just gave me some information about each of them, how long they’d been with the institution and not much more.
Then I remembered my PCP said she would help me, be my advocate…so I emailed her. She immediately got back to me with two names. I know you are all sitting there saying…wait Tom is there, he must know someone or have contacts. Right, but believe it or not, all his contacts gave us less information as far as choices. No one wants to be held accountable for suggestions…it was very disheartening. Then Tom suggested a colleague who’d gone through this and I was golden.
I called her and she spent over an hour on the phone with me giving me names, suggestions, what to do right now, what I would need later. I was able to tell her some of my fears and she was able to tell me either not to worry, or buck up honey you will just need to get through it. The journey had just begun.
A Sense of Urgency
I found the lump in my breast a while ago. I cannot remember if it was a month or two or three. I found it and meant to call but life got busy. I had a final to finish and the kids were coming to visit. I had an appointment with my internist coming up so I knew I could ask her to take a look at it. Why didn’t I have a sense of urgency as soon as I found it, why was I satisfied to wait until I saw my doc? Did I know in subconsciously what it was and not want to face it at that moment? I didn’t even tell Tom. I tell him everything and when I find something I always, always make him feel it, look it, figure out if I should panic. But this time I didn’t I waited and mentioned it to him in passing the morning of my appointment. Now I beat my self up and think, I wasn’t doing my self-checks regularly enough, I should have gone immediately, I blew it. Later I stopped beating myself up when I found out how long I probably have had this growing in me.
The kids came and we had a grand party for everyone to meet Reviva and then as quickly as they arrived, they left. They only come for four or five day visits and it is so short. But every visit whether it is here, in Jackson, in Captiva wherever, the night before they or we leave we stay up late chatting. Every time. I always say to myself, next time I will stay up late talking more nights than just that one. But its always the last night, trying to jam in all the things we want to say to one another or questions we have for each other.
These talks become philosophical, medical, humorous, but hold a seriousness of how much we love one another and don’t want the visit to end. This last visit we spent a lot of time that last night talking about cancer. We talked about Marisa and her death from brain cancer and how terrible it is. Josh said, “All cancer is terrible.” I said, “Some is worse than others.” The more we talked about various people with cancer, Marylyn with Lung Cancer, Joanie with Pituitary, Mom with Breast, Dad with Leukemia, I realized he was absolutely right all cancer is terrible. I don’t remember much else from the conversation yet it lasted for almost three hours. I just remember the feeling of sharing. Kalen, Josh, me, just sitting and shooting the sh-t. We go from topic to topic so easily without hesitation without thought. I am blessed that way; both my children talk to me about stuff. All kinds of stuff that many parents never hear about, some parents would rather not hear about and some parents like us who can’t wait to hear about.
I have always rooted for the underdog, books, movies, athletics, horse racing, spelling bees, whatever the venue, I want the underdog to win. It is satisfying, cathartic, renewing and reminds us we all can succeed. Life is full of great stories where people beat the odds– so when I sat in the dark cold room filled with video screens I too hoped to beat the odds. A radiologist, my husband and I, dressed only in one of the gross blue print hospital gowns that flap open, sat starring at the mammogram of my right breast. He pointed to a fuzzy round mass and said, “I am 98% sure it is cancer.” I was the underdog and oh how I wanted to be that 2% and beat the odds.
A lump on my breast brought me to my doctor on May 6, 2012. I’ve found many lumps in my breasts in my 59 years, been called back for extra views on mammograms for something suspicious, had ultrasounds, but they have all been negative. This time there was a sense of urgency I’d never heard or felt with all my previous exams. This time my doctor felt the lump and within 10 seconds told me to get dressed, the sense of urgency in her voice was unmistakable, I no longer beat the odds. When she returned to the room she picked up the phone and called the mammography lab to see if they could take me immediately. This sense of urgency scared me to death. Less than 24 hours later I sat in the dark cold room with my odds so bad no gambler in their right mind would bet on me.
This blog is my journey with breast cancer and my recipe for living with it forever. It is partially a self-indulgent endeavor to get things off my chest (a pun on bilateral mastectomy—I will find laughter wherever I can), a journal on to how to be brave, how to ask for help, how to laugh and how to eat. I am a chef my life is food and food will be a huge part of the posts. I have helped many family and friends over the years work through cancer with food, laughter, listening, love and tears.
We with breast cancer are the underdog and when we hear “I am 98% sure it is cancer”, we need to know the underdog wins this time.