What are these crazy ramblings all about….

This is my blog.

It’s ramblings and a story of sorts about a girl who was nursing her son and had a plugged duct that wouldn’t go away in the Fall of 2007.  And like all good stories with a heroine and a villain, I was turned away for several months before my OB receptionist let me in to see a doctor.  I had never heard of Inflammatory Breast Cancer, but there I was, full of it.  I had Inflammatory in my right breast and a big’ol honk’in thing called adenocarcinoma that measured 10 cm in my left breast that was completely undetectable until they looked at it through the MRI.  I’m not sure how it is that a 10 cm softball fit in my B size breast but….well….it did.  And so all 13 cm of my cancer got a really whopping amount of chemotherapy, also referred to affectionately as the chemo cocktail.  It was not nearly as fun and pretty as the usual cocktail.

I then went through a double mastectomy and radiation.  I sailed through like a champ.  My crazy tumors were completely gone after chemo and this was confirmed to us after the mastectomies in the pathology report.  This decreased my chance of recurrence significantly.  I hated radiation but thankfully I just got a nice sunburn and never any blistering.  I was declared NED (no evidence of disease) in October of 2008.

I continued to take my miracle medicine called Herceptin for another year since I was Her2 positive.

What they take off in a few hours then takes a few years to put back on, especially if you don’t want anything fake.  I didn’t want implants so I traveled to Northwestern in Chicago to have a DIEP flap, which is basically moving your tummy fat north to make breasts.  But I didn’t stop there.  I decided to take full advantage of my opportunities and I asked my nice plastic surgeon to move fat from my hips to my breasts, and he said “sure.”  Lucky ducky me.

So here I am in 2013 and I’m saying goodbye to the clergygirl blog about my breast cancer journey.  If you have stumbled upon my blog because you have been diagnosed with breast cancer recently, I want you to know that I am a survivor.  I thought life would never be the same….and guess what….it won’t.  It took me a very long time to heal physically and emotionally from cancer, but here I am 5 years later and I’m feeling stronger than I have….um….maybe since I was young, naïve and 22.

Don’t beat yourself up if it takes a while to get your groove back.  It took me the better part of 5 years.  But I am here to give you hope that a woman who is stage 4 cancer (or stage 3 depending on which doctor you talk to), can live, can heal, and can live fully again.  The pain, the memories, the scars and the fears do begin to fade, but they will always be a part of you, but cherish them because they make you a beautiful person with real empathy and compassion.  My favorite band is called “Over the Rhine,” and they sing a song with the words “all my favorite people are broken.”  You may feel broken but your journey makes you real and approachable and wise.

I’d be amiss not to say that a huge part of my journey has been my faith.  Doing the day-to-day battle of treatment would have been unbearable had it not been for the hope of something more. I hope you have that same presence in your life.

The way you can read my blog is from the beginning in March 2008, or if you have a certain topic, use the search bar and you should find something if it pertains to breast cancer treatment.

Hugs to you who have to walk this journey,

Jen

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Nicole

This has been a tough few years for us at MWC. 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.

The Pink Owl Project

What can I say…I have no time to write. For the past 6 weeks I lived and breathed nursing school, Pink Owl Project, and teaching at Spring Arbor. Jeremy and I have been living a bit like ships in the night. He started teaching at SAU as I finished last week.
But the most fascinating news with me is this crazy little Pink Owl Project. We had our first show at the Kalamazoo Art Hop on November 2. We were such a hit the Park Trades Center asked us to come back for the December 7th Art Hop!
I’m hoping that as I get my final nipple tattoos in December, my connection to breast cancer will take on a different form. I’ve been feeling healthier and stronger over the past few months and I’m excited to see if my passion for cancer research might take me somewhere….yes, there are some secrets up my sleeve…and I’ll be excited to share them if they happen!
Check out our site at:
Www.pinkowlproject.com
And don’t forget to donate to an awesome researcher at University of Michigan: Sofia Merajver.

The Pink Owl Project

How will I celebrate 5 years of being NED?  I’ll get a group of women together to show their scars and tell what it’s like to be a survivor!  Check out my latest project!

Headlights

Remember how I’ve debated whether to get the nipples added to my breast or not, and I finally decided I was going to do it? Well I did go through with it a month or so ago and I almost had a heart attack after I did it. I chatted more than I should have through this little surgery when I had really wanted to watch. So when Dr. D was done, as usual….he gives me instructions while I’m digesting the fact that my new nipples look like a bacon wrapped appetizer that you’d serve at a New Years Eve party. Now I’m not trying to say he did a bad job….it just wasn’t what I expected. So I nod my head as if I’m listening to how to care for my appetizer looking nipples and all I can think is “for the love of God…why did I do this!” I’m pretty sure he makes those quick exits on purpose and the nurse is left to clean up, including convincing me “they WILL look good.” of course I didn’t believe her but nodded and got dressed and left to head home.
Three days later I can’t wait to see what they look like. So I take off the bandages because I need to know of my nipple still resembles a new years eve snack…..
To be continued tomorrow….

10 Reasons to Reconstruct the Nipple

I hate using the word nipple. I suppose this might be our crazy twisted view of breasts. We can show breasts freely at the beach or at the Mall (some of us can) but mention breastfeeding or see a breastfeeding mom and we get nervous. (By the way, I think this is crazy) I think it has to do with the nipple. So deciding to get nipples or to leave my breast looking like Barbie’s has been a bit difficult. Why do I need them? I don’t. Why do I want them? I’m not completely sure. I have a bunch of little reasons why I want nipples. And since people have asked me how I’ve come to this decision, I’ll share them with you. And a few of you who did a search for nipple reconstruction found my crazy blog and are considering nipple reconstruction as well.

1. My locker room phobia. I reason in my head that if I have a nipple I won’t scare anyone who might glance my way in the locker room. Especially children. They are only used to nipple-less breasts on Barbie and Ken. I’m hoping with a nipple to feel a little less abnormal.

2. My Dear Plastic Surgeon says it will look more like a breast. And I believe him. He says it will draw the eyes away from the scars around the breast. Which is amusing to me because it’s not like I’m going to topless beaches, but I do see myself in the mirror every morning and I know what I used to look like. So does Jeremy.

3. The erotic factor. Yes, I did just say that. I lost any bit of feeling in my breasts when they took them. I may as well like what I see. Women actually are visual despite what the relationship books tell you. We know what looks good and what doesn’t.

4. The erotic factor for Jeremy. He would deny any need for nipples. He’s sweet like that, but I don’t believe it for one minute.

5. My kids. I’m glad my kids still have me. But sometimes I wonder if having normal looking breasts would help them in some way. Normalcy is good, right. I used to joke after I had mastectomies that Elijah (my son) would either like really flat women or really big breasts when he grows up, since he was only 1 when I had mastectomy. I figured laying against my rock hard chest would somehow taint his view of women’s breasts. Silly, I know, but it’s how I pass the time when I’m bored. I don’t think I have big breasts now, but a year or so ago, after reconstruction, I was reading to Elijah and he had his head on my breast and it must have occurred to him that they felt like a pillow, because he sat up and pushed on my breast like he was rearranging the pillows and said….”mommy, you have BIG nana’s.” This was our code word during breast-feeding and it has stuck around. Jeremy and I laughed. Compared to my rock hard chest, they do feel pretty darn good. I like having normalcy, I like having pillows, and breasts with nipples are normal.

6. It completes the job. It feels incomplete if I don’t have a finishing point…..no pun intended. Thankfully they won’t resemble Madonna’s cones.

7. I can’t feel it, so it’s not that big of a deal. The funny thing is that I do actually have some sensation in my breasts. I suppose the stem cells from the fat transferred is somehow healing the transferred skin. Very interesting. But I still didn’t feel much at all. Very mild burning sensation.

8. I can make them whatever size I want. I could choose that for the breast mound and I can choose it for my nipples as well. And, if I’m not happy, Dr. D said he can make them bigger or smaller. I like not having to wear a bra, so I’m worried they will be too big, but he has said I can make them flatter if I want. I suppose I could make them inverted if I wanted too….lol!

9. I hate feeling guilty for wanting breasts again. I know this is stress I put on myself. But lots of people offer their opinions when you are doing reconstruction. Just some advice from me here….but saying”do what feels right for you” is the best advice to give a woman post breast-cancer. She’s been through a lot. But a lot of people, who don’t know what it’s like, have said “why do you need them?” or “mine are small too.” And all I can say is….yours didn’t get cut off, nor does it have scars, they can feel when your husband touches them, and the nipples respond when you’re cold. If I want to have three surgeries to plump my breasts up and make them look like a breast by adding nipples…..and I have a plastic surgeon who will do it for me, then I will! I’m done feeling guilty about wanting normalcy.

10. I like taking risks. I could stay ok with Barbie’s boobies or I could risk no one seeing them but me and liking my breasts and having them look normal to me. I also have a pretty good plastic surgeon so the risk is minimal.

 

The Finale

You know on fourth of July when you watch fireworks and at the very end they put off a bunch at the same time. But you keep waiting and waiting for that finale, and they keep teasing you, and you keep thinking it’s the end and it’s not. Well that is probably a good way to describe my reconstructions. I keep acting like I’m done and I’m not. I keep saying one more, and it’s not. But I truly am at the end now. In two days I see my dear plastic surgeon for the last time for him to give me nipples. Yes, nipples. There is something very strange about writing about nipples. I’m comfortable writing breast, not quite so with nipples.
But I’ve decided to do it. I’m saying goodbye to the Barbie Boobs and hoping they really do look realistic with nipples.
And really….the last finale will be getting the nipple tattoo’d. I promise.
Wish me luck:)

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?