Komen

I’m starting to think pink. It’s taken me a while. I now own a lot of pink stuff. Pink shirts, pink socks, pink bags. This year I decided to have fun with the Komen Race in Kalamazoo. Last year I was the first place finisher but this year I’m proud to say I was 5th! Some amazing 40 year old survivor rocked the race in 21 minutes. And it was 95 degrees. When I was checking out the results I met the 4th place survivor and she was 65! I love it! We totally high fived!
I tried to stay upbeat this year. It was pretty emotional for me. But I know deep in my heart that my friends who passed this year from the Motherswww.motherswithcancer.com with Cancer Blog would want me to live and laugh. But sometimes it’s still hard.

Excuse me while I……

……try on new blog names like I try on jeans.  I’ll know it when I see it.  Am I right?

New Name

I’m trying out some new names.  I haven’t pastored in several years so I don’t really feel like clergygirl anymore.  And I’m starting nursing school in September.  I actually feel like a post-cancer girl who was thrown a curve ball, who’s trying to figure out my place in this world.  I’m also a little angry (thus the hot, not because I think myself hot, lets just be clear about that right now) about breast cancer in general and what it takes from women, and men too.  Is it ok to be angry about breast cancer?  I’m angry enough to run a marathon to raise money for research.  I suppose that qualifies as being a little hot under the collar.

So you can tell me what you think of my new name.  Does it fit? Did you prefer clergygirl?

 

Under Threat!

Looking forward to reading this book….check out this article and book and the threat/assault against our breasts!

Help Me Make a Change

One thing I decided not to blog about during cancer was the stress of finances while going through cancer.  It felt too much like airing my dirty laundry.  But it was a huge stress for me during and after cancer.  It’s still stressful.  The reason it was so stressful is:

a.  The medical bills are quite large with cancer…..even if you do have insurance.  We have met our deductible every year since cancer.

b.  I wasn’t planning on getting cancer in my 30′s with three small children, house payment, car payment and the dreaded student loans.

It was the student loans that gave me the biggest anxiety.  Only months in to my treatment between barfing in a toilet because of chemo and trying to make myself look alive enough to drive down to pick up my children from school, I was making phone calls trying to get our loan company to allow us to defer for a few years.  When they wouldn’t because Jeremy and I were consigned and he wasn’t sick and made just enough money, I called something called the Ombudsman’s Office in Washington D.C. set up to help people work out issues with their student loans.  But they couldn’t help either.

So we went in to default.  Not without many tears.  And what do you think the government did to a woman with Inflammatory Breast Cancer and another aggressive tumor in the other breast the size of a softball?  They added an extra $20,000.00 in fees to our bill!  Yes, you read right.

I’m not asking you to sign this petition below because I think I should get out of paying my loans. But I do think it’s insanely crazy that when people are seriously ill they can’t get automatic deferment on student loans or risk fees that drown them!

I’ve known other women with breast cancer who have even had recurrence and still were forced in to default because they couldn’t pay.

A little grace…..pulllllleeeeaaaassseee!

http://www.change.org/petitions/new-york-state-higher-education-allow-deferrment-for-people-going-through-cancer

Sign my petition to help those going through cancer NOT have to worry about student loans till they are better!

My Ipod #1

Here’s the man who will get me to mile 26.  The words of his tunes speak to my soul.

Just in case you wondered what was on my ipod or needed to add a little spring to your step.

The Merajver Lab

I’ve made a decision.  One decision in the right direction.  I’ve been saying for the past year I would do a marathon for my 5 year cancerversary…..and I’m quite certain I can achieve this goal now that I have run 4 half-marathons.  But I needed to decide two things.  I’ve made at least once of those decisions.

I’ve decided where the money should go.

Some of you might remember I was treated here in Kalamazoo, Michigan at the wonderful West Michigan Cancer Center, but I also went over to the University of Michigan every few months during treatment to concur with an oncologist over there who deals more specifically with Inflammatory Breast Cancer.  Over the past few years I have occasionally looked online to see what research she has been doing.  I knew she traveled often to Tunisia because the rate of IBC is so high over there.

So I contacted her a few days ago to see if I could help support her research.  And one thing I really wanted to know was that she would get the money for her team and it wouldn’t get swallowed in all the bureaucracy of a big university.  I figure I lived through this horrible disease and I’m going to run my booty off to try to raise as much money as I can so another mother doesn’t have to die from this disease….I want to be sure I know where the money goes.

She said that U of M has allowed her to keep ALL the money she raises for her research…..and this is a significant honor because this doesn’t always happen.  That’s how much they believe in her research.

So I’m very excited to have one decision made.

Now to figure out which marathon I want to run.  I’m shooting for November or December.  I really wanted to run near February 4th when I was diagnosed, but I think preparing for a marathon in January with my longest runs would be really hard, so then I was thinking about running the Las Vegas Rock-n-Roll on December 2…..because that would be my birthday!  But the reviews are HORRIBLE!  Worst reviews I’ve ever read.  Do I dare run it in 2013 in the hopes they will get some of the kinks worked out?

Advice from marathoner would be good.

Here’s a link to this great research and Dr. Merajver’s team!

Me and the Marathon

For the past year I have been amusing myself with the thought of doing my first marathon to celebrate my 5 year cancerversary.  I’m not sure how other cancers are, but 5 years seems to be a magical number for us breast cancer survivors.  It’s a goal and an accomplishment all in one.  But for some reason I feel the need to do something more.  I need to celebrate, but I also need to give back.  I feel the need to push myself a little bit more, remind myself that I have more to give, and remind myself that I am alive to make choices every day, painful choices, healthy choices, loving choices.  Today I have a choice to make my body miserable in order to make it stronger.  Unlike during chemo.

And I need to mark my five years for other reasons too.  I need to give back to people who research every day so that I could have more than a 30% chance to live.  When I was diagnosed with Inflammatory Breast Cancer my chances weren’t any better than 30% past five years.  That’s the reality.  Fifteen years ago I’m pretty sure my chances would have been close to….maybe 5%.  I don’t know.

I do know that research, and women who offered themselves up for clinical trials meant that when I was diagnosed with IBC they knew not to cut directly in to my breasts with a mastectomy, but to instead do chemotherapy first, so that the tumor would shrink and there would be less likelihood of any cancer cells escaping ind metastecizing elsewhere.  It’s through research that my doctors knew what kind of drugs would be most effective.  And they chose right, because when I did have my double mastectomy they couldn’t find a trace of cancer.  And I don’t know if you recall….but I had over 13 cm of tumor mass between two breasts.

We need to find out why Inflammatory Breast Cancer is so deadly.  We need to know why it grows so fast.  We need to know why it happens significantly more to young mothers in their childbearing years?  Babies need their moms.

And then finally, I need to run to honor the friends and lovely, young, mothers who didn’t make it in to that 30%.  I don’t really understand why I made it and they didn’t.  But that’s why I’m so determined to run this race for them and to raise money for research, so even if we don’t find out “why” inflammatory breast cancer happens, at least we will know how to treat it and mom’s can watch their children grow up.  That is what I desperately wanted after I was diagnosed.  I was so scared my children wouldn’t remember me.

I recently spoke at an event where a doctor, when asked about my cancer (IBC) versus a stage 1 breast cancer described it publicly as this: (Pointing at another woman) “her cancer is like an infection we can treat with antibiotics……(pointing at me)….and hers is like a flesh-eating bacteria.”

I have debated posting this because if I had just been diagnosed with IBC this would have been extremely depressing for me to read (and I want to only sprinke hope amidst my blog when it comes to the newly diagnosed).  But now that I have lived through IBC and understand the monster that it is, I can handle the description (although it still scares the heebie jeebies out me).  But the reason I tell you this is because although Inflammatory Breast Cancer is rare, it is on the rise.  If 1 in 8 of us are getting breast cancer in our lifetime, and the most deadliest form of breast cancer with the lowest median age at time of diagnosis is on the rise, and other breast cancers are declining…..maybe we should start thinking about this before it becomes an epidemic?  It’s probably safe to say it’s considered an epidemic in Tunisia where 15% of all breast cancer is Inflammatory Breast Cancer.  My oncologist who travels there to study the disease said the women come to see her and many of them will go back to their villages to die.  The treatment is not available to them. (Yet!)

And what happens when you research the worst case scenario?  Well, since they now treat larger invasive tumors with chemo first (just like IBC) it just might give us all some answers, whether we are stage 0 in situ, stage 1 lobular hormone positive or stage 3 invasive ductal Her 2 positive or triple negative .  Maybe we would not just find out the cure for breast cancer, but maybe the cause too.

So I’m going to run.  I’m going to run and run and run, kind of like Forest Gump, just not as fast.  And I’m going to do my best to raise a significant chunk of change for IBC research.

That, and I’m going to start nursing school in the Fall so I can try to understand this terrible disease a little better.  Let’s hope I can accomplish both:)

So check back once in a while and I’ll be telling you my journey and giving you some ways to help (hint, hint…..where to send the check….lol)

Perception Obstacles

After reading this article on perception of women in leadership in the church I felt a desire to create my own little picture quote.  Lets get past the perception obstacle and start placing people based on their giftedness and calling rather than gender.

I’m Gonna Love You Through

“After a few days, Jesus returned to Capernaum, and word got around that he was back home. A crowd gathered, jamming the entrance so no one could get in or out. He was teaching the Word. They brought a paraplegic to him, carried by four men. When they weren’t able to get in because of the crowd, they removed part of the roof and lowered the paraplegic on his stretcher. Impressed by their bold belief, Jesus said to the paraplegic, “Son, I forgive your sins.”

Some religion scholars sitting there started whispering among themselves, “He can’t talk that way! That’s blasphemy! God and only God can forgive sins.”

Jesus knew right away what they were thinking, and said, “Why are you so skeptical? Which is simpler: to say to the paraplegic, ‘I forgive your sins,’ or say, ‘Get up, take your stretcher, and start walking’? Well, just so it’s clear that I’m the Son of Man and authorized to do either, or both . . .” (he looked now at the paraplegic), “Get up. Pick up your stretcher and go home.” And the man did it—got up, grabbed his stretcher, and walked out, with everyone there watching him. They rubbed their eyes, incredulous—and then praised God, saying, “We’ve never seen anything like this!” Mark 2:1-12

I recently spoke at my church on this passage.  I challenged the congregation to be “mat carriers” for each other and talked about the “mat carriers” I experienced while going through cancer.  Then I saw this video and it reminded me of how much it means when people reach out to you and truly care for you during difficult times in your life.  The paraplytic had four friends who carried him to Jesus, they dug through a roof to get him to the feet of Jesus.

So thankful for the people who cared for me and went above and beyond to help me feel His presence…..even today.