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One Year Later - A Mastectomy Journey, Part 3

If you’re just coming into this series, you’ll want to read Part 1 and Part 2 before coming back here for today’s post.


I have a couple of options for reconstruction, an implant or a flap procedure, but to be honest, I find it incredibly difficult to make a decision on this. I’m fairly certain I wouldn’t want an implant, but would go with a DIEP FLAP reconstruction.

There are pros and cons to both of these, but personally, I feel like the balance leans toward the flap procedure for me. They are both a multiple surgery process, but the long term risk analysis leads me to the flap procedure, even thought it’s a much more major undertaking.

No matter what I decide, I will not have my reconstruction done in Alaska. That is one of the reasons I am not in a big hurry to get the ball rolling on it. I’ve done some preliminary research and found four surgeons in the Florida panhandle (where my family lives) who perform this procedure and come with high recommendations and success rates. However, I’m not ready to commit to being away for a few months with Michael having to fly back and forth for surgeries. That’s too much time apart, quite a large financial commitment, and emotionally draining.

We are hoping to learn something at the end of this year about where we might be stationed next. That information could be a catalyst in helping me decide what to do and where to do it. If we find out that we will be moving to a major city in the lower 48 or even in Europe, that would give me further research opportunities.

What I really want you to take away from this mini-series is this – just because my hair is growing back and I’m no longer receiving intense treatments, doesn’t mean my battle is over.

There are a couple other things I want you to know.

The most important is that I serve a mighty God. He does exceedingly more than I could ever come up with on my own. He has this entire thing in His hands. I have admitted sometimes having difficulties trusting His plan, but that’s mostly because I don’t know what it is. But, I’m not sure I would want to know what it is, if given the opportunity. I think knowing the plan would be a bit like spoiling a really great surprise. I don’t know why I have had to battle these things. It could be to change my heart, to help another fighter, for my childrens’ sake, to help a family member’s faith, to spread Christ’s love even further than I could have otherwise, or any number of things I’m not smart enough to even think of. But I do know that in the end, all will be well and exactly as it should be.

This last thing cannot be skipped over and also deserves a prominent place here in writing. My dear husband, Michael, plainly put, is a hero. All the nice words in the world could not do justice to the support he has been – not just this past year, but for the entirety of the time we have loved each other, which is 17 years! This past year has been the hardest year we have faced together and he has been a rock star. Michael has endured more than his fair share of my bad attitude and steroid rages. He has held me while I cried, and stayed up late as I needed to talk about just one more thing. Michael has also mostly suffered in silence in my presence. He had the wisdom to see that I needed him to carry me through this storm, and protect me from some junk. He did all this while working (though we are blessed that he was able to work at home much of the time), completing the last couple of classes and earning his Bachelor’s degree, being mostly responsible for the kids, homeschool, and the house, and shining a light into our lives that we were not capable of seeing on our own.

Michael, I love you and could not do this life without you.



One Year Later - A Mastectomy Journey, Part 2

This is the second post in a three part series. You can find Part 1 here.

Scars – they are not just physical, there are many emotional scars when you have been through a major, life changing illness such as cancer.

The obvious physical changes were/are pretty drastic. But the emotional things you don’t see are even more drastic.

For many weeks after the mastectomy, I couldn’t look at my scars or chest without nearly vomiting. It seriously made me feel ill. I still don’t look at that area more than I need to, or when I shower. If I think too much about it (right now as I’m typing this), I am still affected.

Warning: I’m about to talk about my under garments!

To appear ‘normal’, I wear a prosthesis. Yes, there really is such a thing. Beyond outward appearances (and the confidence it gives me to not be gawked at), there isn’t much that’s natural about this prosthesis. It’s silicone and made to feel as close to the real thing as possible, but it is not the real thing. It requires a special bra with a pocket in the cup to hold the prosthesis in place. It’s moderately uncomfortable after a long day’s wear. It has no sensation – meaning, unless I can feel the pressure on my skin beneath, I don’t recognize when I’ve bumped up against something or I’m squashing it/myself (that might be a hard to follow scenario, if you’re not a woman!). On days when I won’t be out in public, I don’t always wear a prosthesis, but even that requires a different bra. A simple pull over stretchy bra works well for those days.

Things that should be simple no brainers, aren’t. Recently, I was planning to lap swim while my children were all in their swim classes, however, my locker room anxiety got the best of me. Swimming requires a different prosthesis that is safe for fresh water, salt water, and chemically treated pool water. Then there’s also a special swimsuit that is made with pockets to hold the prosthesis. It’s no fun to drive home in the cold with a wet swimsuit on and even though I’ve done it a few times over the recent months, changing in the locker room is quite stressful. Especially if it’s at a busy time and the two privacy stalls are occupied.

Exercising also has its differences. I wear the same prosthesis for swimming and exercising, but a special sports bra is required.

Also, just as an added anxiety inducing bonus, my insurance will only cover these items in lieu of a reconstruction. How ridiculous is that? Basically they are saying they will pay a few hundred dollars every couple of years for medical equipment (prostheses and bras) OR I can have a reconstruction (including follow ups, touch ups, fix ups, making the other breast match, etc.) that could cost $100k+. Since I haven’t decided if I’m going to have a reconstruction (thankfully there’s no statute of limitations on that), I’ve decided to pay for these items out of pocket and not risk losing my reconstruction over it. I doubt they’ll reimburse me down the road if I decide not to have a reconstruction and so far I’ve probably spent $500+ in bras and prostheses.

Other things you may not know about my mastectomy:

I had a skin sparing simple mastectomy. My breast tissue, areola, nipple, some of my skin, and two lymph nodes were removed. I have one large and one small scar from that surgery. Since it was skin sparing, I also have extra skin, leaving it looking lumpy and wrinkly, rather than smooth. As with any surgical scar, the skin in the area had no sensation for many months. In the last few months, I have regained a bit of skin sensation, some pectoral muscle, and chest wall sensation. This sensation is very different and strange, though. Leaving me even still hesitant with the area. I don’t even like to touch it because of the way it feels when I do. I can definitely feel pressure, but since most of my nerve endings are gone, it’s so very different.

I also had two drains that stayed in for 10 days. Those drains had to be emptied several times a day. There are two small scars high on my side left by those drains.

Due to having lymph nodes removed, even thought it was only two, I am at increased risk for lymphedema – for which there is no cure. In an effort to combat this risk, I can have no IVs, blood draws, or blood pressure taken on my left arm. I wear a {pretty} medical alert bracelet that says “Left arm: No IVs, blood draws, or BPs” it also has my husband’s contact number on it. I have two alert tags, one on a plain stainless bracelet that can be worn at all times, and another interchangeable one that can go on specially made pretty bracelets.

Some of my favorite clothes just don’t work anymore. I know it’s probably not as obvious to others as it is to me, but I do want to feel comfortable and not self conscious in my clothing. It has been necessary for me to buy some new clothing, but that’s also a bit stressful.

To be continued . . .

One Year Later - A Mastectomy Journey, Part 1

This post has been difficult for me to write. I have written, deleted, re-written, shifted text around, started over, and then some. It still isn’t completely well put together, so I would appreciate if you would follow my rabbit trails. I really feel like these things need to be said.

I have struggled with some pretty heft emotions over the past week, which began with a routine mammogram last Wednesday. I am struggling with living this new life I have and it is compounded by 7 weeks of clouds/rain/snow (with only a few hours reprieve here and there – except for a glorious day of sunshine Monday), waning daylight, and rapidly dropping temperatures.

I cannot fathom having a mammogram every year for the next {potentially} 50+ years. Through quite a bit of research, I remain unconvinced that such a number of mammograms is safe. My oncologist is optimistic about some new diagnostic tools that are in the works, are non-invasive, and non-radiation.

Today marks one year without my left breast. How’s that for an “anniversary?”

A bit of background information:

Over the past 10+ years, our family has been dedicated to giving our bodies the best natural defenses we can by being educated in real nutrition, toxins, and natural healing. We strive to live a life that is pleasing to God, and one of the facets of that is being good stewards of our bodies, and those of our children. We take care of ourselves, eat healthfully, and don’t use harsh chemicals in our home or on our bodies {mostly – we’re not perfect}.

As you can imagine, 14 months ago, a mastectomy was not something I had ever given much thought to. Sure I knew what they were and why there were sometimes a necessary part of cancer treatment, but never had I considered something so monumental would ever be needed in my life.

Rabbit trail: I was very angry about this cancer diagnosis. Not angry with God in a “Why me?” sort of way, but angry because it felt, truthfully, it still does, like everything I have done to try to keep my body healthy has been for naught. My thoughts tend to lean toward, “What’s the point of even caring about my body and what I put in it or on it, if it doesn’t matter anyway…?” Some rough thoughts, and truthfully some very sinful thoughts if I let them linger and control my mindset.

As it goes with many unexpected, life threatening illnesses/diseases, I had a crash course in breast cancer and its treatments. Most of you know that I’m a pretty type-A person, so I researched until I thought my brain couldn’t handle any more information, but then I researched a bit more. I took copious amounts of notes, asked what seemed like hundreds of questions of doctors, nurses, and Google. And made decisions about my future (with much prayer and consultation with Michael) that most people never even fathom they’ll have to make.

Rabbit trail: I still get stuck sometimes in what I can only describe as a thought circle. My thoughts spin around in a circle of wondering if I made the right treatment choices and considering all the things I will or could have to deal with in the future due to those choices. “What if?” is a very dangerous question, and I will admit that trusting God in this specific area has been very difficult for me.

Along with my breast cancer diagnosis came a self induced, through severe stress, ulcerative colitis (UC) flare – if you aren’t familiar with it, it’s basically Crohn’s, just in a different part of the digestive system. I was so sick. I’ll spare you the gross details, but feel free to do a search and understand that I was as sick as one can be with it and not require constant hospitalization. Getting my UC flare under control actually became the priority before we could treat my cancer.

So, I began some very intense treatments for the UC, which included some powerful steroids that had all sorts of ridiculous side effects.

Then, when enough improvement was seen, I began chemotherapy. Except, that unexpectedly set me back with my UC and chemo had to be delayed.

When chemo needed to be delayed, surgery came back into the immediate time frame. And that’s where this post was originally intended to go.

I had a mastectomy of my left breast.

I did go on to finish out my chemotherapy treatments, and there were complications and lots of temporary issues during that time, but I want to talk more about what this mastectomy has meant and done to me. I realize that it isn’t just the mastectomy that has altered my life, but it’s what has been the hardest for me.

To be continued . . .


9 Months of Hair Growth

How my hair has changed over the last year.

I put this collage together a few days ago and it really evoked a whole gamut of emotions that I wasn’t expecting to feel. It’s interesting to experience these rushes of emotion and what brings them about.

A year ago, just two weeks after my first chemo treatment, my hair began falling out.

I do really miss my long, easy hair. It was soft and mostly simple. I am learning to love (and properly take care of) my new hair, but it’s definitely a process. While I’m absolutely grateful to be where I am today, I do still grieve for what I lost (not just my hair…). It’s odd to realize that I almost don’t even recognize that long haired girl in the photo.

Did you know that I lost ALL of the hair on my entire body? I’ve written a little about the hair on my head and my eyelashes and eyebrows. But, I haven’t talked much about the rest of my body hair. Losing my arm,  armpit, and leg hair wasn’t really that big of a deal. But losing other hair, like nose hair and pubic hair caused quite a bit of discomfort. These are some of the things that all my planning and research never revealed to me. The hair on our bodies actually serves a purpose and it can be quite uncomfortable when it’s missing.


Eli's Growth Plates

It’s been a long while since I’ve written any sort of formal update on Eli. If you have known us or have been a reader here for any length of time, you know that Eli was born with a couple of growth conditions. One called hemihyperplasia (previously named hemihypertrophy) and torticollis. When he was about a year and a half old, I wrote a detailed description of what those two things are.

Since he began walking 8 years ago, he has been at increased risk for scoliosis, hip dysplasia, and a few other maladies due to the difference in the length of his legs. From the initial diagnosis, we have always said we wouldn’t make any decisions on what we might do for his future until he got to an age or medical condition in which we needed to make hard choices. When he was much younger, his doctors had no way of estimating how he would grow or what is growth patterns would look like. He’s nine now and we’ve reached an age where his doctor is confident in predicting his future growth (how crazy is it that they can do this now??).

Three orthopedic surgeons later and he’s about to have his first operation.

Eli’s leg length discrepancy is currently 4.1cm. His left leg being that much longer than his right. He is also consistently 1.5-2 shoe sizes different and still wears a custom lift on the sole of his shoe.

Unfortunately, over the last few years, he has developed the beginnings of scoliosis due to his legs being unequal the majority of the time (when he’s not wearing shoes) and his automatic gate correction (he’s still chugging along in physical therapy to help him correct the way he walks). The best way to combat his scoliosis is an operation on his left leg. The operation consists of metal plates and screws being inserted into the growth plates at the bottom of his femur and top of his tibia, and a smaller device/screw will also be inserted into the growth plate at the top of his fibula to halt the growth of his left leg. This operation basically just puts the growth plates in pause mode, because it physically inhibits them from growing. It is a minimally invasive surgery with a recovery of only a couple of weeks. His surgeon is confident he will return to his normal athletic activities with no long term trouble.

These growth plates no longer being active means the right leg will have some time to “catch up” to the left. While nothing can be done to change the girth difference in his legs, or the size difference in his feet, the goal is that slowly, over a couple of years, his hips will level out and it will reverse the scoliosis curvature he is already experiencing. It is anticipated that he will keep these plates in for approximately two and a half years. His growth progress will be monitored very closely over those two years. This will allow us to make decisions on whether to remove them early, or possibly keep them in longer.

He has other asymmetries (internal organs, face, rib cage, etc.), but his legs are likely the only thing that will ever need any intervention. The others aren’t harmful or inhibiting in any way.

Eli’s operation will take place tomorrow, September 2, would you please pray with us for comfort, ease of recovery, wisdom of the medical team, and my sanity as I make him sit still for two whole weeks. His track record for sitting still is not so good – 3 years ago, the day after a hernia repair, he asked if he could ride his bike!!

One Year Ago

One year ago today, my life was forever changed by words no one ever imagines they’ll hear.

On August 12, 2014, I entered an exam room to receive the pathology results from a biopsy of a tumor in my left breast. A biopsy that had been performed exactly a week prior. As I sat there alone [...]

Seven Months of Hair Growth

Well, I missed getting an updated posted in July. But I have a really good reason!  Our family just returned from 5 weeks away visiting Michael’s family in Australia!


We had such a wonderful trip. We were able to spend lots of time with family, attend the weddings of two of Michael’s sisters, do [...]

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