Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, April 25, 2014

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.


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.


Karien Prinlsoo said...

It might have been a mistake to invite us to send questions ...for me about ds! I've been contemplating sending you an email, with some things we struggle with and which you just seem to fix so easily with your kids. Sorry, I know it's not easy, but in a way you make things seem easy.
I pray for you for wisdom about your decisions to make regarding your health. Tell me: how is your migraines?


Ian & Ruby said...

I continue to pray for you on this cancer journey, and for your family in general.
I hope you get your wish - with regards to your hair! Fourteen years ago my hair had a very few grey ones appearing - after losing my hair, it came back soft and curly - and NO grey hairs. They are just starting to appear now! It's still fine hair, but I feel blessed to have had an extra 14 years without turning grey!.

Leah Spring said...

Karien, interestingly my migraines have been pretty minimal in the last few months. I had one starting the other day and was able to head it off before it got out of control.

Leah Spring said...

Ian & Ruby, thank you so much for praying for me. That is fascinating about your hair! I know another woman who had beautiful, chestnut hair when she started chemo at 45 years old. NO grey hairs! Her hair came in SILVER. All of it. I wouldn't mind silver, I just want a lot more hair! LOL

Dianna said...

From reading your blog and meeting you in person, I know for a fact that you are strong and tough woman who won't let something like cancer get the best of her. Hang in there, Leah. Know that you've got a huge group of supporters backing you ALL...THE...WAY!!!!

Tigger (aka Karyn) said...

After my first chemo where I lost every hair on my body my hair came back thick, curly and white at the front, very dark grey at the back. It had been brown with lots of grey beforehand. It also came back thicker and stronger. After my second chemo where my hair thinned to the point I had to shave but still had some hair and it came back same colour but really strong and fairly thick. One of the keys I believe was following my hairdressers recommendation to keep shaving it off until it was all growing evenly.
Just so you know, chemo is doable but it really sucks and I was surprised how debilitated I was. In my case they used highest doses possible and a variety of chemo's because it had already spread to lymph nodes. You would most likely have something a little less intensive but it still is hard going and takes a while to recover from.
I understand the hard choice. Until I had my full results I was agonising about chemo. Once I found it had permeated my lymph nodes it wasn't a hard decision.
Cancer is so unpredictable and it has no regard for person or situation. Praying for you in your choice making and generally. This is a hard road no matter where you are on it.