Diagnosis: Breast Cancer - Part 1

"I have some news and it's not good."

For some reason, the way my doctor said it - not good - was less shattering than hearing the words, "bad news." After nurses removed several tissue samples during the biopsy, I was glad for the positive way she delivered what was to follow.

"The pathology report shows that you have breast cancer."

My mind flitted around my head in a tornado of thoughts that would not stop long enough for me to ask any questions. Whether it was the flurry of activity in my brain or the shock my body underwent after hearing the word cancer, I could think of nothing to say, so I said nothing.

"Are you OK?" she asked after what must have seemed an uncomfortably long time.

I was fine. I was grateful actually. I thought back to the moment I found the lump. I wouldn't have found it so early if it hadn't been for my grandson, Travis, texting me at 2 o'clock in the morning. It's one of those special things he and I share, texting in the middle of the night. He's nearly 17 years old and he doesn't care who knows that he loves his grandma.

I am usually sound asleep when he texts, and while I love getting his texts, texting is not one of my talents. I fumble with the wrong keys and I'm forever erasing what I just typed. I'm even worse at trying to text while lying down, so I sit up to text him back.

On this particular day, I fall back onto my pillow and fold my arms across my chest smiling about his silly texts that say such things as, "Hey, what up, G?" or "Happy 2:34 (the time it is when he texts)."

When I folded my arms across my chest in that early morning hour, I felt a lump the size of a grape. That was in September, only months after my May digital mammogram showed clear results. I had to ignore the lump for a couple of weeks, though, because I had scheduled a two week visit with my son and his family. My Marine son was stationed in Iraq four times, in Japan for a year, in Thailand for several months, and in Kuwait for several months. No way was I going to pass up a chance to visit with him and his family - and my granddaughter (whose husband is also a Marine) and her family - for something so small.

By the time I returned two weeks later, the lump had grown to more than an inch. And now the doctor was telling me it was breast cancer.

Family and close friends rallied in support, but everybody wondered why I was so upbeat about the whole thing. I couldn't help it. It wasn't pancreatic cancer, I told them. It was breast cancer, easily remedied.

As a teenager and young adult I used to laugh when I was nervous. I resort to humor even now when I'm uncomfortable. One of my dearest friends told me that if I was going to have cancer, breast cancer was the best type to have. We both laughed when I said, "Yay, yippee, I have BREAST cancer!" And we talked about how I could now use breast cancer to excuse myself from having to do anything I didn't want to do:

Sorry, can't mop up that mess. I have breast cancer. Sorry, didn't hear you - my breast cancer is acting up. Sorry, officer, I was in a rush to beat my breast cancer. And on and on.

From that point we went off on a tangent to discuss how my grandchildren could use the breast cancer excuse too. Sorry, couldn't make it to class today - my grandma has breast cancer.

Am I delirious? Possibly. Maybe I'm in that "ignorance is bliss" stage. I don't really understand yet what is going to happen to me. I am relying completely upon the hospital staff who has been holding my hand every step of the way. After the initial diagnosis, staff members made appointments for me. They scheduled four back-to-back meetings this Thursday with a nurse navigator, a medical doctor, a surgeon, and a social worker.

I don't have to think about what's coming. I just have to follow the wisdom of everybody who is helping me. My biggest concern has always been my lack of money, and even now, my thoughts are not focused on breast cancer; they're focused on my finances. I don't know how I might have responded to the news if I hadn't participated in the IBCC program.

While Illinois has possibly the worst reputation for governors of any state in the United States, if not for Rod Blagojevich, former governor of Illinois who encouraged women of low income to participate in the Illinois Breast and Cervical Cancer Program by sending postcards to Illinois residents, I would never have been able to afford the medical treatment I have gotten and will be getting. Despite Blagojevich's problems, I for one, am grateful for his attention to this matter.

Day 4 September 24, 2009 - Thursday

I have to admit: today was the first day I felt a little apprehensive about my breast cancer diagnosis despite the fact that my mom and one of my sisters would be accompanying me to the meetings scheduled today at the Mills Breast Cancer Institute.

I had four appointments - one with a "nurse navigator" who walked me through the process of what I would be doing for the duration of the interviews. Next in line was the surgeon who told me he had never seen breast cancer in the area of the breast where mine was located. He wanted me to know that the operation would be a real challenge and that if I chose a lumpectomy, he would perform the operation, but that a mastectomy might result anyway.

In a lumpectomy, the surgeon looks for "good margins" and removes not only the tumor but also the surrounding tissue. Because of where mine is located, conditions are not conducive to good results - my surgeon doesn't think I have enough tissue around the tumor to remove it without guaranteeing complete removal of the cancer.

The tumor is located close to my chest wall at the base of my breast. Also, with a lumpectomy I would have to get radiation and, because of the location of the tumor, the radiation would affect my lungs. With a history of asthma, even though only the tiniest portion of my lung would be affected, he wanted me to know that it was up to me if I wanted to risk injuring my lungs.

Another risky option was choosing chemotherapy to shrink the tumor before any surgery took place. Tumors don't always shrink after chemotherapy threatments though, and the three to six months it would take for the chemo to possibly be effective might result in an enlarged tumor anyway.

A mastectomy, on the other hand, would mean removal of the whole breast followed by chemotherapy to kill any other cancer cells that may be lingering in my body. With a mastectomy, I had the option of leaving enough skin for reconstruction or removing the skin and leaving nothing. The sight of having no breast would be traumatic enough, I decided. Having loose skin hanging where my breast used to be would further traumatize me.

Because of the risk of the cancer metastasizing (spreading), the surgeon would also remove lymph nodes during the mastectomy to make sure the cancer had not spread.

After my visit with the surgeon, I went to the lab to get my blood drawn. When the nurse held my arm to take my blood, she looked at me compassionately and said, "We're one in eight." She had had breast cancer too. I thought of the people around me, the people I love dearly. They number more than eight. I wasn't thinking, "Why me?" I was thinking, "Why not me?" I'd rather it be me than anyone I love.

So I'm choosing a mastectomy. The blood work that was drawn yesterday will determine when I have the surgery. Like the lymph node removal, the blood work will show whether or not the cancer has spread. Right now, because of the size of the tumor my cancer is in stage 2 (out of these stages: 0, 1, 2, 3, 4). The actual stage will be determined when the surgeon removes the tumor.

The x-ray I had will show the current size of the tumor. The surgeon told me that while it appeared the tumor had grown, the tissue around it was being affected by the cancer, and there was no way of knowing if what I was feeling was the tumor or the tissue around the tumor. So I await the results.

Day 7 - September 27 - Sunday

Today is a day of reflection. I find myself wondering about how I might FEEL after the mastectomy. Will I ever be able to look at myself in the mirror again? Will any man fall in love with a woman who is missing a breast? People already in relationships have to deal with mastectomies together. Somebody who is not even in my life yet may not be able to handle it (no pun intended).

Other issues surface. I toss and turn all night thinking about them. Will every turn result in pain? Even simple movements might cause pain. Pouring water into the coffee maker will be an issue - the water receptacle is located on the right side of the coffee maker. Reaching high for a cup or a glass, grabbing plates, or pulling out pots and pans - all of them might cause pain.

What about showering and washing my hair? Will I lose my hair? Would it matter if I did? I had long thick nearly-black hair growing up. Today it's still long and thick, but my hair color is about 95% silvery white. Hair grows but would I lose my eyebrows and eyelashes too?

The pain would limit me for a long time. I know myself. I have a very low threshold for pain. I could have the same operation as the next person and while she might feel a little discomfort, I will be in excruciating pain. I've heard women brag about how they felt a little tightness and seconds later delivered a baby. I could have slammed my belly with an axe and not felt any worse pain than when I gave birth.

Like many women who grew up during the "flower children" era, I wanted to deliver my children naturally. Pain connected with "natural" births resulted in babies. Mastectomy pain, however, would result only in loss. I'm definitely taking pain medication for the mastectomy.

I don't mind being that one in eight who has breast cancer. I don't even really mind that I have to lose a breast or that I might lose my hair. What has happened as a result of getting breast cancer is that I have noticed what a phenomenal group of family and friends I have, all of whom are like soldiers battling this disease with me. If ever I felt like crying, I would find so many shoulders willing to accept me. It humbles me. I truly do have an amazing troop of supporters.

I know that my optimism is tempered with age. My breasts fulfilled their duties. They nursed four healthy babies many years ago. If I were a young woman facing a mastectomy, I'm sure the loss of my breast would be more important and I might feel sorrow for its loss. I might still feel sorrow for its loss. I don't know. This breast did, after all, feed all of my babies. But getting rid of the unwelcome invader in me is of utmost importance, and my focus is on defeating this enemy.

Day 8 - September 28 - Monday

Blood work and x-ray results came in today. So far, it appears that while the tumor itself has grown, the cancer has not spread to other organs. What this means is that during surgery, they may have to remove only a couple of lymph nodes. I am becoming more and more uncomfortable with the idea of getting a mastectomy.

I decided to look online for actual photos of what the aftermath of a mastectomy looks like. I don't know if I can handle looking at myself in the mirror. I wonder if that's how people who've lost limbs feel. Though I never thought before that I could benefit from talking to somebody who had had one before me, I am looking forward to talking to one now.

Interestingly, through my affiliations on facebook, a former high school classmate informed me that her twin, also a friend of mine in high school, had been through breast cancer once and was possibly going through it again. When she asked me if I wanted her phone number, I willingly accepted it and spoke to Caryn for quite a while.

Caryn battled breast cancer seven years ago. She might have it again. Her results come in this week around the same time I will be scheduled for surgery.

I have to talk to my pulmonary specialist before I decide if I want my surgeon to perform a lumpectomy. If he feels that even the slightest damage will hurt my lungs, I will have to proceed with a mastectomy. I am aware that I may end up with a mastectomy anyway, but now, after viewing the photos of actual mastectomy patients, I am considering reconstruction. Or maybe a lumpectomy after all.

Day 9 - September 29 - Tuesday

I'm having second, third, and fourth thoughts about everything. When my pulmonary specialist told me I would be fine even if the radiologist removed a third of my right lung, I decided to go ahead and schedule the lumpectomy. But when I called the surgeon's office back, I was told I would need to talk again with the oncologist, because preparation for a lumpectomy might require me to get further testing. Even the thought of going for further testing is wearing me down. Thursday I meet with my oncologist.

Day 10 - September 30 - Wednesday

I received an email from Caryn's sister, Cathy. She definitely has breast cancer again.

Day 11 - October 1 - Thursday

According to my oncologist, my chances of recovering from breast cancer are the same whether I get a lumpectomy or a mastectomy, so I will start with a lumpectomy. Since my last visit, more of the pathology report surfaced. Because the pathology report showed that I have an aggressive form of cancer, my oncologist has decided to treat the cancer aggressively using three different forms of chemo drugs: Carboplatin, Taxotere, and Herceptin. I have what is called the Her-2/neu gene for her-2/neu positive disease. Herceptin would be the best chemo drug for my form of breast cancer, but it wreaks havoc on the heart valves. She scheduled a MUGA (multigated acquisition) scan for Friday. The MUGA scan will tell her if my heart is pumping blood properly. If my heart valves are functioning properly, my body will be able to accept Herceptin.

The cancer is aggressive. The treatment will be aggressive - six rounds of chemo, once every three weeks. Then surgery. Then more chemo and, after the lumpectomy, radiation. If they discover after the second treatment, that the tumor has not shrunk, I will get a mastectomy after all. And two treatments is all it will take to change my looks.

"You will go bald," the oncologist told me and added, "Sorry. I'm a straight shooter."

Day 12 - October 2 - Friday

The MUGA scan was not at all what I expected it to be. I thought I would walk into an x-ray room, stand in front of a machine, the technician would shoot a picture, and I would be finished.

The reality was that a phlebotomist had to draw my blood, blend it with a radioactive dye, and re-inject it in me. Then I had to lie on a table while a large flat scanner above me scanned my heart valves. Every scan took approximately 7 minutes. The technician took several scans because she couldn't find a good angle. For some reason, my heart - that used to be centered just below the middle of my left breast - is now so near my left side, I can feel it beating into the bed when I recline on my left side. The technician assured me that not all hearts are located in the same place.

Day 15 - October 5 - Monday

The MUGA scan report indicates that one valve is functioning at 60%, another at 68%, so the Herceptin will work well with me. Chemotherapy starts this Thursday.

Part II will discuss my feelings about chemotherapy, how it affects my health, and how I feel about losing my hair.