What I didn't know, and an update

Just 5 weeks ago, I knew very little about breast cancer.

I knew it killed women, but I also knew some women survived.
I knew there was an inherited form, and that family history is a risk factor.
I knew it was treated with chemotherapy and radiation.

And that, my friends, is all I knew. That is pretty pathetic considering 1 in 8 women will be diagnosed with breast cancer sometime in their life.

ONE IN EIGHT!

You, me, every woman, needs to understand breast cancer. I feel like we're all walking around with a target on our backs, and I didn't zig zag fast enough.

I thought "Breast cancer" is breast cancer. I didn't know there are fourteen different types of breast cancer! I have the most common type: Invasive Ductal Carcinoma, accounting for 80% of all cases of breast cancer, and in the US about 150,000 cases per year are invasive breast cancers.

I didn't know that even though I may have the same type of breast cancer as Susie Q, the genetics of our cancers are very different. This makes our treatment options different, and the list of treatment possibilities is extensive.

I thought, when a person is diagnosed with cancer (any kind) treatment is started immediately. Even Urgently. I had no idea this is absolutely not the case with many types of breast cancer, mine included.

I thought breast cancer meant the woman had to have a mastectomy and chemotherapy. So many women are not only able to keep their breasts now, but they are surviving with their breasts for decades!

I didn't know that cancer is "fed". Cancers are fed by all kinds of different things. My cancer happens to be bed by estrogen and progesterone. (and no, not sugar. And no, don't send me the 'cancer is fed by sugar' stuff anyway because you feel I need some enlightening.)

Here's where I'm at with my cancer:

The last of my tests have finally come back, leaving me more confused than ever. I haven't yet met my oncologist but will on May 1st. At that time we'll go over all of my pathology reports, as well as the results of my Oncotype testing and come up with a treatment plan. I am fortunate enough to fall into a "gray area" group of patients where treatment is pretty much a coin toss as to whether or not chemo is an effective treatment for my cancer, or if my risks are no different if I do radiation only. Leave it to me to have such luck.

I am having a really hard time getting much of anything done in the house. Between dealing with Abel's school issues, and working on getting Audrey's medical appointments completed, and the fact Angela is turning 18 (a birthday which includes a whole stack of paperwork because she will now be a "disabled adult") None of this would be overwhelming to me, except that now I have all my own health issues thrown into the fray. Its all just mentally exhausting, and if I had a hard time getting normal chores done before, now its so much worse. So lots of things are getting done, but not the things right in front of me. I feel a bit inept.

I have been doing a lot of reading and research, talking to other women who have the same type of cancer as me, finding out what they decided for their treatment plan. Now I'm at the point where I just need to walk away. I need to stop reading and stop asking. Next week when I meet with my oncologist I will make a decision and I will not second guess myself. Much. I'm so thankful I have Dean who is so supportive and doesn't want to influence me with what he thinks. "It is your body, and you are the one who has cancer. Whatever you choose to do is what I will support."

I have bad hair. It started thinning when I was in my early 20's. I have a fair amount of gray. If I have to have chemo I want to get better hair out of the deal. This should be a reasonable request, I think. No?

And so, if I'm a bit quiet lately, now you know why. It's not because I'm super busy. Well…I am but I'm not. (if you don't know me personally this may not make sense to you.) For those who have called me with Down syndrome, adoption, or just general parenting related questions, please don't hesitate. I enjoy talking and thinking about something other than cancer. Cancer is not taking over my life.

The Cancer Coaster

I wanted to go all this week without posting about cancer. I really didn't want to think about cancer at all, except that's hard because certain parts of my boob remind me several times per day that it exists. Since I'm writing about this journey for more than just myself, I think its important to acknowledge this aspect of cancer.

Cancer causes crazy.

Cray cray.

Crazy pants.

Crazy Crackers.

Yes, cancer causes people to become all of those things. There is no telling when I could go from a sane, rational mother of 5 to Crazy Crackers mom who can't remember what she did eight seconds ago. (and, I'm sorry Noah, I have no clue what I did with your birth certificate that I just saw two days ago. The air ate it. I will get you a new copy.)

Then there are the strange, "out of body" type fits of irritation that are not like me. I go online and find that other women have described the same things, and I feel slightly better that maybe I'm NOT crazy. Perhaps, just maybe, I'm a little stressed? Its possible.

 Last week while I was still waking up from anesthesia, I found out my lymph nodes were cancer free. This is a major piece of information because it means I don't have to have chemotherapy, just radiation only. Then two days later my surgeon called me at 8:00 pm. He wanted me to have a good, worry-free weekend, so called to tell me that he did, indeed get all the mass out of my breast. (It has clear margins, for those who know the lingo.) I was thrilled. No chemo for me, for sure! YAYAYAY

Tomorrow morning I meet with my surgeon for a one-week follow up, and to go over the final pathology results. I was just getting ready for bed, looking forward to this early appointment because it won't mess up my whole day. And then suddenly I remembered something! Just before surgery when my surgeon came to talk to me, he listed what all they'd be doing in surgery, including that they would be doing an Oncotype DX test that would give them more information about my cancer. I had heard of this test in the breast cancer forums, but didn't really pay a whole lot of attention to it.

Then I had a brilliant idea:

"I should look up this test and see what kind of information it will give me!"

Why why why why why why why do I do this stuff to myself????? Especially when Dean is already in bed for the night so I can't tell him about it. (instead my poor sister gets the late-night messages.)

The Oncotype DX test looks at the cancer cells from the tumor, watches their activity, does some math then determines the likelihood the cancer will return. You can follow the link for all the details if you want, but if you're already bored with my cancer talk, and how I am/am not dealing with things, just know that I need a number below 18.

A number below 18 means I do NOT need chemo. Nope, not at all.

A number above 31 means the benefit of chemo outweigh the risks of the drugs. It will give me extra assurance that my invasive cancer will not return.

But a number between 18-31??? That means indecision. It means I will have to think, and weigh the risk vs benefit factors involved, and decide whether or not I should have chemo. Me. Stand on a teeter totter and decide which end to walk off of.

I hate this roller coaster. Hate. Hate is a strong word, but so is Cancer. I hate cancer. I hate the crazy. I want it to be July and all of this behind me. My birthday is the last week of June. It'll be an awesome birthday!

Stupid Cancer!

The Waiting

Sunday

The radiologist had told me we should have the biopsy results by 12:00 on Friday.  Thursday night Dean and I cried ourselves to sleep. Tears of fear. Dean's previous wife, Fae, died from breast cancer in 2001. How could this happen to him a second time? Maybe its not cancer. Maybe its just a benign lump and we can leave it alone?

They told me the results should be in by noon, but if I hadn't heard from them by 1:00 I should call. At 10:30 I picked up the phone, then put it back down. Dean needed to leave for work but he wanted to be home for the results. He waited as long as he could then at 10:30 he left reluctantly. He gave me a hug. There was still some time for denial.

At 10:45 I picked up the phone and dialed. I got the voicemail of the nurse practitioner and left my information. How many other women were calling for their results today? How many women are diagnosed with breast cancer at this one clinic on any given day? On this very day, how many other women were as afraid as I was? How many others were hovering over their phones, waiting?

At 11:00 I called again. The nurse practitioner answered, "Oh, I've been watching for your results from the lab. I'll call you the moment I get them!"

11:35 a call from my mom: Anything yet?

11:50 text from my sister: Do they wait until 11:59???

At 12:30 the phone rang. I knew it was her. I gulped for air.

"Hello?"

"Hi Leah, its N. " She sounded friendly, " We haven't met yet, but I think I passed you in the hallway of the clinic yesterday. I heard all about your family."

"Yes, I'm sure I was hard to miss. I was the one freaking out. Was I still standing or was I on the floor when you saw me?"

She laughed, "No, you were on the way to the conference room with your husband. Dean, right?"

"Yes, Dean."

Oh Lord. She is very friendly. She can't have bad news. She's too nice for bad news.

"Can you verify for me your date of birth?"

Oh…her voice had changed. It was suddenly not so light. Still friendly, but more serious.

I gave her the information she needed and I realized I was holding my breath.

So much trouble breathing lately.

"I'm sorry to say, your biopsy was positive for breast cancer."

And somehow, at that moment, I was ok with this. Well, not ok, but my fear was gone. Now that I knew for sure, I was no longer afraid. My brain kicked in, and I started to ask semi intelligent questions.

What type do I have? I am lucky enough to have two types of cancer: Ductal Carcinoma In Situ (DCIS) and Invasive Ductal Carcinoma (IDC)

What is the treatment? It depends upon the results of the MRI and lumpectomy. It will either be lumpectomy and radiation, or mastectomy and chemotherapy.

How far out can I schedule surgery? The surgeon will discuss that with you but you're a couple weeks out from surgery.

She scheduled me to have a breast MRI on Monday morning, and to meet with the surgeon and/or oncologist (I can't remember which!)  in the afternoon to go over the results.

I hung up the phone and called Dean. I took a deep breath and told him the results.

I had to tell Dean I have cancer.

Then poor Dean had to go back to working, being happy and chipper to his customers,  knowing I have cancer. Knowing lightning found him a second time.

Then I called my sister. And my mom. And then I went into the bathroom, stripped off my clothes and stood in the shower in the hottest water I could tolerate.

I have cancer.

For real.

I stood in that hot water and cried. I didn't ask God why. I didn't ask him how. I just asked him to make it all ok. I told him I didn't have time for this! HE brought these kids to our family, WHY THIS? I begged him to not let me die. I have kids who need me. Dean needs me. And I knew then that I have always known I would get cancer someday. I always knew. I have odd little fears about things I have always kept to myself, like don't stand close to the microwave because those invisible waves scientists say are safe could trigger the cells in my body to go crazy. And here they are. They did it. They went haywire. And now I have to fight them. I have to. There is no choice. Cancer found me.

Over the weekend I had so much to get done, but I couldn't do a thing. All I wanted to do was sleep the weekend away so that Monday would come. Being awake meant listening to my brain screaming "CANCER CANCER CANCER CANCER." I would pick up a shirt to fold, "Oh my God I have breast cancer!" Wiping off the kitchen counters, "I have breast cancer." Holding sweet Audrey. "Cancer!"

Dean walked into the kitchen for something and I hugged him. I clung to him. I whispered into his ear "I can't believe I have cancer."  "I know." he said. "I know", and he held me, and we cried quietly so the kids wouldn't know we were crying.

And he held me while I cried.

So many tears.

If only I could sleep it all away.

I have breast cancer.

I can't believe I'm typing these words right now.

Breast cancer.

In me.

In my breast. The one that is bruised and battered from the biopsy. Several times throughout the weekend I closed the bathroom door behind me and stood before the mirror. There it is. My breast that has cancer in it.

Shock.

Disbelief.

Emotions I have no words for.

Thoughtless thoughts because…because…there is just so much nothingness in my head right now. Numb.

I took the boys to buy shoes. The sales clerk and I exchanged friendly small talk. Suddenly I felt words wanting to come pouring out of my mouth, out of control. "I have breast cancer. I just found out yesterday. Yes. Really." I was shocked at this odd desire to make an announcement. I don't know how I kept the words inside my head. I wasn't even sure they DID stay there. Did I say it out loud? How did I prevent them from spewing their vileness on everyone around me? Where did that come from? Maybe I'm losing my mind now too??? Cancer is already making me crazy. For two years I have been carrying these death-causing cells inside me while they multiplied and did their nastiness to my body, and now the knowledge of them was making me crazy. Thankfully the sales clerk was not exposed to the thoughts in my head and her work day continued on as usual. The boys and I went home and I told Dean what had almost happened. I think he's afraid of me now.

Tonight, Sunday evening, I have diagnosed myself with PTSD.