The First to Know

When BHE (Best Husband Ever) and I first tried to start a family, it didn't take long before I was pregnant. We were surprised and thrilled and terrified all at the same time. I was sailing along in a doctoral program, BHE in medical school, and everything was right in our world. I miscarried a week after discovering the pregnancy. Six months later the same thing happened again. We were beyond devastated. After each miscarriage, we locked our doors, turned off our phones, and took time to deal. Our lives had stopped for a moment and we couldn't bear to see everyone else carrying on with theirs. That's the nature of difficult times. It goes like that for everyone -- the cruelty of knowing what it feels like to suffer loss. Although we were in our later twenties at the time, we were the first in our group of friends to know what a miscarriage felt like.

A few years later, as others began families, I remember a good friend taking me aside and apologizing for not understanding before what we went through. Unfortunately, she had recently been added to the group of "knowing." There's a strong familiarity among sufferers, and even stronger when your suffering is so similar. Something I've been thinking about since my breast cancer diagnosis last year is that this whole scene will eventually replay itself. Years from now a close friend will be diagnosed and will say those same words. She'll apologize for not understanding what I had gone through this past year. It will be a completely unnecessary apology, but it will still come. I hate that reality. It's the last thing I'd ever wish for someone. I don't want other women to understand what I've been through because it means that they are now walking that road. That's the difference between sympathy and empathy. Over the last year, I've been the recipient of both, and both have their merits, but when you're in the midst of suffering there's little more valuable than empathy from someone who's been there. My doctors have been fantastic but their comfort only goes so far. It's the women who bear the same scars as I do who gave the most comfort. Specifically, another mom in my son's class who had been through it all just a few years earlier, and my plastic surgeon's wife who was in the midst of treatment when I was diagnosed. These women answered personal, detailed questions, validated my raw emotions, and laughed with me at the absurdity of it all. Because of the empathy that they showed me, I can now show it to others. I never dreamed that this is the way that I would be able to serve people, but the service is a blessing. It's something good that comes out of something so very ugly and brutal. I'm not aching to be a major fundraiser, turn my closet pink, or pass out ribbons every chance I get. I'm just trying to help other women like me -- those who are shocked, terrified, and trying to navigate the tightrope that is breast cancer. I know that there will be plenty more women in years to come and I hate that fact.

A common question that people ask when they see good come from tragedy is whether the affected would change history if given the chance. My honest answer? Of course! If I could go back and somehow never get cancer I would in a heartbeat. I am so blessed by the friendships, insight, and perspective that I've gained through this but I'd just hope that those things would somehow evolve without this dreadful cancer stuff. So I'm telling you, it's okay to wish it never happened! No person has to be a hero, a martyr, or anything else in the face of hardships. You just have to live. Don't just exist through it -- live through it. Do the best with what you have at the time. For current cancer patients and survivors still coping, sometimes your best is staying in bed and crying. We all have those days and it's normal, expected, and perfectly fine. If you can't get past this point though, reach out! Contact me, a close friend, a stranger in a support group, someone. You are not in this alone! Millions of women are empathizing and millions more are sympathizing.

Practical Matters: Mastectomy Prep & Useful Gear

Something that I never thought about before I had cancer was the preparation that goes into surgery and/or chemo. I didn't have chemo so I can't personally speak to that, but I did have quite a bit of time (two months) to prepare for my bilateral mastectomy. I scoured websites for advice on helpful tips and gear and here's what I came up with. Obviously, every person is different with varying timelines, access, and means, so take this list for what it is -- what was helpful to me and may be helpful to you or someone you love.

Must Haves

• Front closure sports bras (zipper or hook & eye -- I found mine at Walmart but have seen ones at Academy, too)
• Ice packs (the little round ones for kids work great!) -- Only use these if your doc okays it. Some don't want patients to use them because you won't be able to tell if your skin is getting too cold. I didn't have issues with that and found them to be immensely helpful in relieving muscle pain.
• Loose fitting button up shirts
• Loose fitting button up pajamas and/or oversized tank tops that you can pull up from your feet
• Lanyard with clip (to wear in the shower and hang your drains on). I ordered and used a product called the Prody Drainage Bulb Holder (http://www.amazon.com/indivdually-Individually-0814-8220-Bird-Cronin/dp/B00IK4PD9Q) and it was by far one of my most useful post-surgical items.
• Face wipes -- it's difficult to do anything, let alone lean over a sink to wash your face in those first days after surgery.
• Baby wipes -- for everything else when showering is too hard
• Alcohol swabs (to clean drain port after emptying)

Might Make Things Easier

• 4x4 cotton gauze pads (the drain sites hurt so I covered mine with gauze and that helped keep the pressure from the bra off of them)
• Surgical tape (Nexcare makes a cushioned tape that is awesome)
• Neosporin (in case your drain sites need it)
• Dermaplast spray (this makes any hurting incision feel better and disinfects)

I slept in a recliner for the first two weeks. It had an easy to access and use electric button. There's no way that i would have been able to reach or have the strength to manage a traditional/manual recliner lever. If a recliner is not an option you'll need lots of pillows to prop you up since laying flat will put a lot of pressure on the drain sites. You won't be able to sleep on your stomach or side for a while.

I used a waterproof pad under my sheets in case the drains leaked. The only time this happened was in the hospital but it made me feel better about not messing up a mattress/recliner.

Do you have any advice for surgery prep or recovery gear? I'll add more as I think of it but please feel free to leave comments so I can add your info as well. And please ask questions if you have them!

And...One Year and One Day Post-Op

One Year Post-Op

One Year Later

It's officially been one year since I received my breast caner diagnosis on February 7, 2014. I can't believe what the past year held, but I'm also thankful for what it didn't. It didn't hold surgery complications, infections, radiation, chemo, a bald head, a suppressed immune system, or any of the other potential risks and side effects of cancer treatment. I'm thankful that a year later I'm moving on with my life. I still take a pill (Tamoxifen) everyday and the side effects aren't fun, but with the help of an SSRI (Celexa) and a healthy diet I'm now handling the side effects fairly well.

I've actually been working on a different post all week but I'm not quite finished, so I wanted to make this short post to remember this day. It's been busy. I spent several hours at my son's school helping his Destination Imagination team with a project. Then we had lunch as a family at Torchy's Tacos. I had a short nap (thanks, Tamoxifen), cleaned the house, and made preparations for my sister's baby shower that I'm hosting tomorrow. It was a completely normal day and I couldn't be more grateful! Today could have gone much differently, the way it's going for thousands of other young moms still battling this awful thing. I think about you. I'm wishing you the peace that I feel, the "no evidence of disease" label, and perfectly normal days. I know that this thing might come back one day and I'll be ready to fight it again. Until then, I'll cherish the happy busyness with our young family and continue on my way.

The First Part of The Story: Cancer In My 30s

I recently wrote a guest post for my friend Shawn Albright's blog. I discuss facing cancer as a parent of young children and the importance of embracing our "stories." Head over and check it out in it's original form. Take a look at Shawn's posts while you're there -- it's good stuff! Full disclosure: Shawn was my senior prom date (just friends) but I promise that doesn't bias my opinion about his writing. ;)

http://www.shawnalbright.com/guest-post-first-part-story-cancer-30s/

"There was this show that was on when I was in junior high (1987-1991) called “thirtysomething.”  (I assume that title format was creative genius at the time.) Here’s what I knew: the show was about people in their 30s and I wasn’t allowed to watch it. I couldn’t imagine what was so exciting in the lives of these old 30-year-olds that I wasn’t allowed to see. What happens in your 30s anyway? Nearing the “old” age of thirty seven I can now safely say – plenty! There have been the typical things – career-building, house-buying, baby-having – and some not-so-typical, like my current cancer-having thing.

I’m one of the rare, special women who have had the privilege of being diagnosed with breast cancer before the age of forty – at just shy of thirty six. It hasn’t even been a year since my diagnosis so my feelings and emotions of it all are still undeclared at best. I don’t know if I’m currently in or done with the processing stage but it doesn’t usually make me nauseous nor nail-spitting angry to think about anymore so I suppose that’s progress.

Our two children were 8 and 3 when I was diagnosed. That’s what having cancer in your 30s is. It interrupts parenthood and careers and begins to corrupt the story that you had so carefully crafted of your impending long, happy life. I haven’t until just now, as you are reading this, shared one major thought that burst from my shocked, terrified brain that day I was diagnosed; a thought about my family and their precious lives that I so cherish; a thought too cruel to utter -- what if I’m just the first part of their story?

I imagine that is the most common worry that enters any mother’s head when faced with a cancer diagnosis. What about my family? What would they do without me? Would they remember me? Aren’t they too young to remember me? What if I was just his first love?  And the list goes on.

My mind raced to cope. As we told people and they grasped for words of wisdom and ways to help, we simply asked for prayers of peace and comfort. Peace and comfort. I have to believe that as those prayers were answered my initial panicked question – What if I’m just the first part of their story? – gave way to a more peaceful, more comfortable maybe I’m just the first part of their story. Somehow thinking that I might have a purpose in all of this, regardless of the outcome, calmed me. I don’t know that I ever actually accepted that this was a true possibility…that I might die, that my family might eventually have another wife and mother to finish out the story that I started. I think the stream of reassuring test results kept those possible realities in check and the sprint of appointments, decisions, surgeries, and procedures took care of the rest.

A few weeks from now will mark one year since I was diagnosed with breast cancer. For the most part, when I look at the last ten months, it plays out like some surreal dream from which I’m still trying to wake. I will live the second half of my life having already experienced what we typically think of as reserved for grandmothers. In my 30s I have lost a major part of my womanhood and will never again look or feel “normal.” I will forever have the possibility of recurrence tucked away in my mind. I fear that the anger and disappointment associated with that will always be with me.

It’s now that I realize there is power in recapturing that initial terrifying question for myself – this really is just the first part of my story. My cancer experience is forever part of me now. It is something to grieve and when I’m ready I hope that I can accept it. But it’s just the first part of my story. I believe that the second part will be cancer-free and that I will be the one finishing the story of our long, happy life together…well beyond our 30s!"

Approaching my "Cancerversary"

I haven't posted since November?! That's pathetic. I'm asking for "holiday craziness" grace on that one. If you've ever blogged, you know that feeling when you're semi-constantly composing blog posts in your head but never make it to actually posting them. Or maybe you're much more stable and committed than I am and you do post them. Either way, what I'm saying is that I've had several posts floating in my head for two months now (and five un-posted drafts already half written) and I'll attempt to get them out of my jumbled mess of a noggin in the next few weeks.

When I started this blog it was out of shear necessity. I've been a writer for as long as I can remember. No, I've never published anything on paper, but I've always needed to write. When I was diagnosed with cancer, there were days when I had to lock myself in our bedroom and get the thoughts out of my head before I could continue my day. It helped keep me sane. That's why I began this blog. Over the following few months it helped me try to explain to others the practicalities and realities of what I was going through. It was a way to communicate what I wasn't ready to speak out loud.

Now I'm just a few weeks away from what the cancer circles call my "cancerversary." Dumb word? Yes. But it marks the day when I got that call that changed our lives. February 7th, 2014. I look back at the last year and I can hardly believe what has transpired. And I'm shocked that I'm starting to get over it. Back in April, after my bilateral mastectomy, I couldn't imagine a future where I wouldn't hate my body, a day when I wouldn't agonize over what was done and what was taken from me. But, in this new year, I'm beginning to think about it a little less. The discomfort and awkwardness nearly fades away as I'm running errands, conducting daily life, covered in normal clothing and knowing that nobody knows what I've been through or what I look like unless I decide to tell them. That's all oddly comforting.I'd be lying if I said that I don't still get angry or sad sometimes, especially when I hear that another woman has just been diagnosed with breast cancer. I get angry on her behalf and I allow myself to feel that kind of empathy for what she's facing. I'm still trying to figure out what this role of "Survivor" means to me. Some days I feel fine wearing something with a pink ribbon and joining in on "survivor stuff" and other days I want to run as far as I can and just attempt to move on. I'm sure things will become clearer as time goes on, but for now I feel like I'm in an emotionally solid place (thank you, Celexa). I'm sure I'll write about it if things change.

A little housekeeping business:

As I continue with this "breast cancer" blog, my posts will likely evolve from talking about myself to giving practical advice to other breast cancer patients and their friends and family who are looking for ways to cope and help. I've already been asked by many people about which organizations to donate to, what to put in care packages, how to prepare for a mastectomy, etc. I'll work on addressing some of those issues in the coming months. I will also share links to other blogs, articles, health info, etc. that I think are helpful. If you came to this page because you have been touched by breast cancer and you'd like me to address a certain topic, please leave a comment and I'd be happy to look into it. Also, many people prefer to leave comments on my Facebook page instead of on my posts, but I'd love for other struggling women and families to be encouraged by your comments (as I am) so please consider leaving comments directly on the posts. Thank you!