Wednesday, May 26, 2010

Still looking back

Ok - well the results were positive for cancer. A surgical biopsy was scheduled and I was referred to a medical oncologist

That's how it started. Once the cancer was diagnosed I immediately found myself being pulled along in the health care system through appointments, procedures, tests, paperwork...the job of cancer.

It has been terribly frightening at times. Frightening most of all to know that had I not taken an active role in my care, treatment would have been delayed and things may have turned out much, much worse.

Step three - bring someone you love

My husband came to all of my initial appointments and managed all of the facts. Several weeks into treatment, I still literally had no idea what kind of breast cancer I had. I let him hold that. I focused on what I needed to to stay sane and calm for my kids. Being in charge of the data gave my husband the sense that he was in control of something, an important thing for him. And I was able to turn my head off once I left the doctors' offices.

As with all of my experience, this may not be what works for you. But it was a huge gift to me, and him.

I also was able to bring my parents, in-laws and sister to chemo and radiation appointments. I even brought my boys to see the chemo clinic and radiation room. Everyone near me got to see what cancer treatment actually looks like, removing much of the fear and normalizing it. And I wasn't alone. In the chemo clinic, I have seen grandparents share food with grandchildren, friends chat over jigsaw puzzles, and husbands stoicly observe wives' care. I have seen a lot of worried faces, and some resigned ones, but I have also heard a lot of laughter and shared a lot of smiles.

Tuesday, May 18, 2010

Looking back

I'm not sure how to begin this...but I will anyway. I have learned too much not to share some of this knowledge in the hopes it will help someone, somehow.

I guess the first think I should focus on is what to do if you think there is even a small chance, that you have breast cancer.

Step one - if you are concerned, see your doctor
If you notice anything unusual about one or both of your breasts, go to your doctor. Don't wait. You will be frightened and you may be tempted to wait, to see if the problem will go away on its own. Please don't. The more time you spend wondering if something is wrong, the more frightened you will become. And, take it from me, if you have cancer, you want to start treatment as soon as you can.

This is not what I did. When I found my pink breast, I was in the middle of a holiday with my family. I was not at home. So I monitored it, tried to ignore it, and, once I had wireless service, I googled it. What I found on the Internet scared me. Scared me enough that, when I returned home a week and a half later, I called my doctor.

Step two - take an active role in your treatment
My doctor took one look at my pink breast and said, "That looks like a bug bite." At that point, I had not yet learned that bug bite is a commone misdiagnosis of inflammatory breast cancer (IBC). I had been at the lake, surrounded by bugs. But, as I pointed out to my doctor, I could not find a red spot anywhere on my breast that would have been the point of contact with the bug. When I pressed her for any thoughts on what else it could be, she said emphatically, "Yes, inflammatory breast cancer!" Great.

Here's what I knew about inflammatory breast cancer: it is not the easiest cancer to treat. Now, medicine has made great progress in treating it. But IBC has its own challenges. When I had googled my own breast symptoms, inflammatory breast cancer is what kept coming up. And from what I had read, I was frightened.

So when that is what my doctor announced was the second of my two otions, my blood ran cold.

She sent me for a diagnostic mammogram the following week. That was another treat. I was brought in to the room, images were taken of both my breasts, and I was told to go back and wait in my stall. The technician came and got me, informing me that the radiologist wanted more pictures. My right breast was fine, but my left breast (the pink one) looked suspicious. She indicated that very high on my breast, very far from where it was pink, there was a suspicious area. She pushed and pulled my body, from behind and below, to manoeuvre the chunk of breast near my armpit into the machine. It hurt. Eventually, she was satisfied and got the image. Back to my stall I went. She came and got me again. She needed another one. Back in the machine. Back to the stall. She needed another one. At about the fourth time, I must have been showing my stress, because she looked at me and asked me quietly if I was worried. I said I was. She nodded. Now I was really worried. Eventually, after about 16 images I think, she said the radiologist had what he needed and I could go home. My husband and sons were waiting for me in the waiting room and one look at my face told my husband what I was feeling.

After a few days, my doctor called me in to her office. She showed me one of the mammogram films and pointed out a sunburst of cells up near my armpit. This is good news, she said. They were calcifications, pre-cancers, and very treatable. I would be monitored and have the option of surgery to remove them. But what about my pink breast, I asked. "A red herring, "she replied. "And it's good it happened because it has helped us find these." But she could offer no real explanation for the cause of the discolouration. And this is the moment that fundamentally changed the course of my treatment. "That doesn't explain why my breast is pink. I want a second opinion."

She told me that she would call the surgeon in our city who would be the one I would see if I did have breast cancer and ask him what he thought I should do. The next morning, I had a call from my doctor who was happy to say the surgeon would squeeze me in that day. Off my husband and I went. The first thing the surgeon said to me was, "Ah, the couple who spend too much time on the Internet." Ok, he thinks we are overreacting. I guess that is a good sign. We are wrong to be worried and this probably isn't anything. And then he asked me to disrobe so he could examine me. As soon as he saw my breast, he stopped cracking jokes. He palpated my breast, asked some questions and then performed a needle biopsy. After a few words of advice he told us we should have the results of the biopsy in a few days.

Wednesday, May 12, 2010

Day one...charting the course

Last year, on a Tuesday morning in July, I looked in the mirror and saw that my breast was pink. And so it began.


Well, I am sure the cancer didn't start then, but my relationship with it did. The fear started then, confirmed with a biopsy a few weeks later. The tumour had been there a while. But no one knew how long. The fear was almost bottomless. In many ways, it still is. But something else started then. An awareness of my place in life, my connection with my children, my husband, my loved ones, my path.

No more bullshit. Different fear. And more time spent in the now.