Nicole

This has been a tough few years for us at Mothers With Cancer. I think every death hits us harder and we can’t get out of the slump. At least I can’t. I find myself driving my kids around and just shedding tears, trying to hide them from my children because Lord knows they’ve seen their mom cry way too much. Even if they were small enough to not remember going through treatment, they know all too well the emotional pain it’s taken on me. It’s another thing to worry about.
I’m still coming to grips with Nicole’s passing. I’m not really sure how we found each other but I’m pretty sure it was through Susan’s blog. Nicole had been diagnosed just before me and we started commenting on each others blog. Supporting, kind words, encouraging words. Then we blogged together on MWC. Then we were Facebook and twitter friends, although we both lacked the incentive to tweet much. She was my first twitter friend. Then we were featured in an article together here
In May we had a discussion about how hard it is to watch our friends die of cancer. How when we started MWC it didn’t really occur to us the toll it would take on us to watch our friends die of this horrible disease. To know these precious moms would have to say goodbye to their children.
I can’t believe I’m here 6 months later and Nicole is gone. Her sweet children lost their mom way to early. And we at MWC are grieving the loss yet again of one of our own. Nicole was a special person and a support to so many of us. She introduced me to boob humor often laughing at her lopsidedness and nicknames for them. I’m forgetting now some of the terms she used but maybe my MWC friends could help me out. I just remember having a good laugh at her descriptions and silly stories of the pain of prosthetics.
I will deeply miss you Nicole, even though we never met in person. There will be a huge void in my life from losing you, Sarah and Susan. When your faces pop up on my Facebook or when I’m driving somewhere or something reminds me of you…like the knitters at Panera. And the most I can do is pray for the family you left behind and that Jesus will hold them close.

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!

Marathon for IBC Research

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 marathoners would be good.

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

Hokey Pokey

November 10, 2010 By clergygirl Leave a Comment (Edit)

I feel sometimes like I’ve got one foot in cancer and one foot out.  Like I’m doing the hokey pokey and my body can’t decide which it wants to be.  And just for good measure, about once every six months I need a little shaking up just to remind myself I am never fully ever going to be free of cancer.  Not that my body will never be free, but my mind and my fears will never be free.

I live in reality of being a cancer survivor daily. 

Not that I don’t go hours or days without cancer on my mind, but most days I will have a cancer thought brush my reality.  Just a little nudge to remind me the shadow is still there.

So my brush with reality last week came in the form of a pain in my right side in my lower rib area.  I let three days of this pain go by before I called to see the doc.  I probably should have waited longer, but, there again, I let my mind wander to all the “what ifs.” 

My doctor ordered a CT Scan. 

After being entirely open about my cancer journey I’ve felt a bit timid about saying anything publicly here because, quite frankly, I’m even tired of myself and my little cancer scares.  I, quite frankly would like to lose weight (which I have been) and ENJOY it, rather than freak, because….what if I’m losing weight for another reason….gasp! 

It reminds me that I am clinging to something that is so temporary rather living in the fullness of God and His faithfullness.

Because I’m not really scared of dying.  I’m actually more scared of leaving behind the ones that I love. 

I spend a lot of time, too much time, thinking about what would happen to my children if my cancer came back.  Because chances are really good if it came back as metastasized cancer that it would eventually consume me. 

And I always joke that if Jeremy is left to take care of the kids their teeth will rot out of their head because he will never remember to tell them to brush their teeth.  But the truth is that I just took Elijah to the dentist and he has a mouth full of cavities not unlike my older two, so it’s not like I’m the queen of the pearly whites. 

But I want to be the one to brush their teeth, and help pick out their prom dress, and snuggle with them, and remind them how much I love them and how completely special and unique they are despite their imperfections.

I wouldn’t mind retiring in Florida with Jeremy either.

And just to end on a positive note, because I’m afraid this is sounding far to sad.  My mom, my sister and my MIL are all in “the know” about my pain in the side and my CT scan, so I think they get in cahoots together to call me and text me every hour until I have the results, and you know those techs aren’t allowed to give you any kind of clue whatsoever, and I try people, I really try.  I say things like “just as long as the cancer isn’t back,” just to see if they look sad as I leave.  But this kind woman didn’t give me anything to go on.  At least when I was diagnosed they sent me straight for a biopsy and I knew something was up.

But nothing.  Just a smile.

So my MIL tells me today thatshe has announced to her class (she substitutes) that she is keeping her phone on because her daughter-in-law who has had breast cancer had some tests and she needs to know how the test results came out and that when they hear the phone ring she will need to look and see if it’s me (never mind that I won’t know for at least a few days).  So how cute is this…..every time the phone rings those rowdy high school kids all get together and start saying “shh” and “quiet, Mrs. Brown’s phone is ringing” and she says the class gets completely quiet and they get really serious.  Which I find strangely sweet from a bunch of high schoolers I don’t know. 

And it’s never me on the phone because I don’t know the results yet, and may have to wait a WHOLE second weekend of “what if” before I get the answer.

But I figure, between last spring when I had the bone scan and the lung x-ray, and the time before that when I had the MRI to confirm the lumps in my armpit were in fact just hardened fat from reconstruction and now a CT Scan of my abdomen, I will be assured my cancer is gone…..

Wait, there’s still the brain. 

Crud.

“But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.” (James 1:6)

So I’m tired of being tossed around by cancer.  I’m tired of being shaken up like the hokey pokey.  I’m tired of feeling like I’m shaking the ones I love.   I don’t believe the hokey pokey is where it’s at.  Do you?  I mean, unless your doing it with your kids and fully living, and I guess then it would be absolutely 100% acceptable.  Maybe even encouraged.

Here’s believing I’m living fully in the presence of God today, and even tomorrow, cancer or no cancer

What do I have in common with Crystal Gayle?

I’ve made a decision about my hair.  Alright, I made it a long time ago, but I’m just now coming clean with you.  The day Jeremy shaved my head was the day I knew, when and if it came back, I would grow it forever, and I mean forever.  I’m working on a two-year bob right now.  I’m a secret wanna be Crystal Gayle.  Not the “I never trim the ends” wanna be, but the ridiculously, past my hipperoo’s, wanna be.  When I’m thinking with a clear head, which is very rarely these days, and I look at a picture of Crystal with her uber long hair I think “who in heaven’s name told her that looks good?”  It has to be some really warped reason I’m sure…..like maybe she was one of those kids that didn’t grow hair till they were 10 and she vowed when it came in she would never cut it.  Or maybe they couldn’t afford bath towels when she was growing up so her hair was an easy remedy to a perplexing problem.  I dunno. 

 But somewhere in my warped post-chemo, “I can’t escape cancer” brain of mine, I think.

a.  I really want hair.  I missed it so much when it was gone I want it and I want LOTS of it.  I want to feel it on my shoulders, tie it in knots like lady gaga, and let my girls learn to french braid on it. 

 b.  If I were being totally honest, I’m probably waiting for the day they tell me I need chemo again… but THIS time I will be ready.  It’ll be so long I’ll be able to make my own wig, or maybe glue it back on my head if a wig costs too much.  I’ll be the ultimate comb-over, but I don’t care because it will be MY HAIR! Let me say it again because it sounds so good to type it…..MY HAIR.  I even like to type MY EYEBROWS, but that’s a whole nother post about someone with a wicked uni-brow and I’m not going to take it that far.  (At least I don’t think I will.  Oh that’s right, my eyebrows don’t meet in the middle, so scratch that idea.)

 c.  And the final reason is because when you’ve lost 2 items of “sexy” as a woman, the hair is a logical place to turn.  Especially when 2 items of sexy will never really return, they can try for you but they will ultimately never ever return…..and we’re not talking “complaining after nursing they won’t return,” we’re talking never again will you feel. anything. period. return.  But the hair most likely will return, and this is good.

 And so Crystal Gayle, tonight I’m not raising a glass of wine to you (although you might think I’ve been drinking with my ludicrous ramblings) because that might mess with my hormones and I don’t want cancer to come back, but I do have my feet up with a bowl of popcorn and a diet pepsi, and so here’s to you and your hair. 

I love hair.

Breast Cancer Survivor’s Beach Day Oath

(by clergygirl)

1.  I will go to the beach and not let insecurity keep me from enjoying the sunny days of summer.

2.  I will not COVET my neighbors breasts, even the saggy ones.

3.  I will let people imagine how I got my funky tan lines.  

4.  I will make-believe that the blue dots on my chest from radiation actually do look like freckles.

5.  I will not keep hiking up my bathing suit top and sneaking peeks at my chest to make sure my scars aren’t showing.

6.  I will not care if my chest is super flat, it makes me look thin.

7.  I will find a nice bathing suit with a lining I can cut a hole in for the prosthetics instead of buying those expensive bathing suits where they cut the hole for you, Because breast cancer is expensive enough.

8.  I will live by today’s research and wear SPF approved by EWG if I’m out in the middle of the day for more than a half-hour, but if it’s less than that I won’t wear any to get my dose of VITAMIN D, which is supposed to keep cancer away. 

9.  I will try to keep up with current research just in case rule 8 changes.

10.  I will imagine people are looking at me because “I”M HOT,” and not for any other insecurity I have about my body or my chest.