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The Logistics of a Breast Cancer Journey

When I say logistics, I’m talking about the sheer amount of information that suddenly came flying at us on that crazy day back in August when I was diagnosed with breast cancer.

The surgeon who gently and compassionately told me of this diagnosis gave me one very helpful, tangible piece of advice that stuck with me that day. He told me to go out and get myself a fresh, pretty notebook/journal and make that the ONLY place I write anything having to do with breast cancer and what would ensue.

I did exactly that when I left his office. I really like this Studio C line of notebooks by Carolina Pad and already owned several of them, so I went in search of a new one. I chose this cute one and began dumping my brain in it that very day. Michael was actually away in San Antonio when I received this news, but was able to fly home several days early and arrived home the next day. That was a very difficult 24 hours…

In this notebook, I write a variety of things. I use it as a journal, or write snippets of feelings and things I don’t want to forget about the emotional aspect of this journey. I write questions that need to be answered, or notes for information I need to find. I use it to keep track of every single phone call I have. I also use it to write down symptoms, and when I need to take extra medications that have different intervals, I write down each dose and the time, I also include any OTC meds, oils, or other treatments to alleviate those symptoms. I’ve written down hospital packing lists, childcare schedules, and research notes.

This one tip has probably been the most beneficial of the practical tips I have received. Truthfully, based on my personality and affinity for keeping notes, I would have eventually come to this realization on my own, but in those first days I really couldn’t think about much of the practical and am so grateful he gave me this advice. I feel so much better having all of these notes in one place and easily accessible.

The next thing I did was purchase a brand new planner (I haven’t been able to get on board with digital planners yet) – it was time for a new one anyway since we were about to start a new school year, but this one would be different than past planners. I had much more specific needs this time.

I actually bought the same planner for myself that I had gotten for the kids’ school planners. I found it at either Walmart or Target (it’s by Blue Sky), but it has been perfect for my needs. Because I’m a smidge OCD and would also be keeping the schedules for the entire family in this planner, I came up with a color coding system that has worked well. My appointments are in pink, kids’ commitments in orange, entire family in green, and blue was left for misc. (Michael’s work trips and such). My favorite little hack is so very simple, but has saved me a little brain space – once I’ve worked out the details, along with each of my appointments, in parenthesis, I note who will be taking care of the children! I don’t have to look anywhere else to find that information. Once I’ve added that little orange note, I know I’ve sorted out childcare for that appointment and no longer have to worry if I’ve gotten it covered.

I also purchased a large wall hanging calendar for our office/school room. I keep this updated with the same items that are in my portable planner. This lets anyone in the family know what’s going on at any given time.

The last thing I have done is to purchase a new (also cute!) 3 ring binder and matching divider tabs. In this binder, I keep everything. Due to my additional complicating health issues, I currently have several different doctors.  This would be different for everyone, but my current sections are:

  • Emergency Room – for all the paperwork pertaining to the allergic reaction I had
  • Genetics – genetic testing results and notes from the genetic counselor
  • GI – pertaining to my ulcerative colitis
  • Labs – all lab results that don’t have another home somewhere else in the binder
  • Mastectomy – surgery notes, hospital discharge, research
  • Oncology – anything that I’ve received from the oncology office
  • Oophorectomy – pertaining to the upcoming ovary surgery
  • Pathology – all pathology reports from biopsies and surgeries
  • Prosthesis – yes, there really is such a thing as a breast prosthesis – I have a post planned about it
  • Radiation – radiation consult and doctor’s notes
  • Research – all of my research notes
  • TriCare – this is my health insurance. This section includes all of my referrals, claims, and bills
I take my backpack everywhere I go – especially to all medical appointments. Even if I just run out to grab a coffee or pick up a movie from Redbox, it’s there in the passenger seat. This means that I never have to be without my notes if I receive a phone call, because it’s no fun playing phone tag with a doctor simply because you forgot a question you needed to ask or didn’t have your calendar and needed to schedule an appointment – I learned this the hard way the ONE day I forgot my backpack.

I know this post may seem a bit overloaded, especially if you aren’t facing something so emotionally engulfing, but this system has helped me so much I just had to share. Once I worked out the system that would work best for me, the upkeep has been minimal, but the reward has been amazing. I don’t constantly feel like I need to remember everything. This system functions as an extension of my brain. The only things I truly have to keep in my head are the important things that take actual mental capacity.

 

Things I Miss About the Lower 48

When we first heard that we would be moving to Anchorage, Alaska, I had very mixed emotions. Every person that I know who has lived here has absolutely loved it, so that was very promising. But, I wondered what I would truly be facing. I understood the weather challenges, but I didn’t really know what Anchorage would be like.

Would it be like a step back in time to a city that doesn’t have all the amenities and essentials I was accustomed to, or would it be just like any other small-ish city we have lived in?

Truthfully, we have been pleasantly surprised. We have pretty much every sort of major retailer you would expect (including a disproportionate amount of sporting goods/outdoors shops!). There are plenty of family friendly attractions, and loads of free or inexpensive outdoor resources for all seasons.

I thought it would be fun to compile a list of things I miss from the lower 48 and things that are unique and wonderful about Alaska.

What I Miss About the Lower 48:

  • We don’t eat out frequently, but I do miss the comforts of having some of my favorite chain restaurants, such as Panera, Chick-fil-a, Five Guys, Chipotle, The Cheesecake Factory, PF Chang, and Cracker Barrel, available.
  • Winans Fine Chocolates & Coffees (this was specific to southern Ohio)
  • Affordable groceries
  • Aldi
  • Large, full scale homeschool convention with mega exhibit hall
  • Traveling anywhere within a several state region relatively easily. Traveling from Alaska to most places takes 10+ hours by plane and is very expensive.

Moose on the side of the road on Joint Base Elmendorf Richardson, December, 2014

What I Enjoy about Alaska that is unique to other parts of the US:

  • The extremes in daylight and dark hours
  • Coffee – really good coffee, too! Roadside coffee stands and coffee shops are abundant here. Anchorage has 2.8 coffee shops for every 10,000 people. Per capita, that’s more than any other city in the country – including Seattle!
  • The plethora of unique outdoor activities (Iditarod, ice sculptures in the park, outdoor ice skating, winter outdoor sports, SO many hiking/camping options, glaciers, and so much more)
  • The Aurora Borealis (yes, it is sometimes visible in the far northern tier of the lower 48, also)
  • Interesting weather patterns (we have lived in a variety of climates and the hoarfrost and low lying frozen fog banks here astound me)
  • Animals in the wild that you don’t see many other places. I’m not talking about your average squirrel, groundhog, raccoon, deer, fox, etc., we have seen moose, wolves, sea lions, coyotes, swans, porcupines, beluga whales, humpback whales, sea otters, bears, magpies, salmon, ravens. There’s also the potential to see musk ox, caribou, elk, other whales, and probably more that I’m forgetting.
  • The freshest sushi ever!
  • The fishing is exactly what you have ever heard it is like in Alaksa!
  • The time current time difference (it changes with daylight savings) between us and Michael’s family in Australia is 20 hours. This means that when we travel over there our bodies only have to adjust four hours. This is incredible. It was devastating to our children in 2013 when we came home to the eastern time zone (flying east is always the hardest). We were adjusting 16 hours and it was the most difficult jet lag our children have ever faced.

While I don’t think I could live here long term, a 2-4 year assignment here feels pretty good! We have only been here 9 months and I already understand the love everyone I know who has ever lived here expresses. It’s a very unique place and has so much to offer, especially if you have an affection for the outdoors. You should come visit!

Races and Another Surgery

Arctic Oasis Community Center on base. The kids work on school work, have a snack/lunch, then play while I work out!

I’m running again!!

That’s such a wonderful exclamation to be able to make. At some point during the last few months, I hit a wall, it was a barricade in my mind. My heart knew that at some point I would feel like doing something again, but I could not formulate those thoughts. It wasn’t necessarily a wallowing in self pity type of barrier, it was more like not being able to fathom ever feeling well again, not being able to think beyond right now. I knew it would happen eventually, but I was so exhausted, I couldn’t even think of anything that I would enjoy once those days came.

“They” say that chemo does a number on your brain cells and your ability to have concise thoughts, but it’s something totally different when you’re actually experiencing it. Knowing that you can’t force yourself to think clearly or even into the relatively near future is quite shocking. Brain fog is what it’s dubbed, but it’s something more than that. If you are a mother, remember back to how you felt in those first few postpartum weeks. The sleeplessness, fatigue, and foggy thinking. Add that to how it feels when you take a narcotic pain killer and the swimmy head that follows. Then add extreme fatigue and slight malnutrition and you might be able to conjure up what it was like.

To be able to say that one day I woke up and felt like a completely new person is such a blessing! By the time Michael came home from work that day, the children and I had deep cleaned our house, I had dinner going (including homemade bread), all school work was complete, and we even managed to get the entire house vacuumed. It felt so amazing to be able to participate in the the seemingly mundane tasks my life is replete with. My brain allows me to think clearly now and my energy level is normal. I enjoy cooking and housekeeping again, and I’m getting back in shape. Muscle memory is a real thing, but I’m a testament that there’s no such thing as cardio memory!!!

I have signed up for a St. Patrick’s 5k on March 14. I won’t be back to my previous fitness level by then, but I’ll at least be able to finish and know that I’ve conquered something that seemed so daunting a few months ago!

Physical fitness isn’t just something I’ll be doing because it’s a good idea for everyone, it’s more of a life prescription and doctor’s orders now. The biggest long term complication I face from having my ovaries removed is osteoporosis at an early age. Along with diet, exercise plays an important part in keeping bones healthy. Since I’m embarking on menopause approximately 15 years before I would have naturally reached it, this is even more important for me. My bones have 15+ extra years to deteriorate than most women’s.

The surgery (oophorectomy is the fancy medical name for the procedure!) will be on March 17. Due to my anesthesia complications after my mastectomy, the surgeon is planning for it to be an overnight stay.

********************

Through everything, I have known that I am loved for and cared about by a God who sees all and really does have it under control. I’ve laid my worry down [mostly], and I’ve put on my armor and walked headlong into this battle. It definitely hasn’t been easy and I’m here to tell you that God will absolutely give you more than you can handle. But, it’s because he’s counting on you to seek refuge in him.

Being on the other side of the hardest part of this battle is refreshing, and I want you to know that I’m definitely human and have had many emotional and angered moments (and my darling, Michael, has been so tolerant of my outbursts). On the whole, having faced this with the attitude that God is in the details and is working something good from this has made it SO much easier to face. Something Michael and I constantly try to teach our children is that any job feels easier when you do it with a happy attitude and for the glory of God, and it stands true for this season in our lives, as well. No I don’t always feel like having a good attitude.  This journey has been very difficult, but I can’t imagine how much harder it would be if I were constantly grumbling and complaining.

The Hair Situation

January 1, 2015

The hair on my head has been a hot topic around my house lately! It is growing quite well and there are noticeable changes every day!

At the turn of the year, this is how I looked.

There was a little hair there, but I had shaved off all the scraggly bits so it would all be the same length and wouldn’t look so ridiculous. So, I wasn’t completely bald, but pretty close.

A few weeks ago I got brave and, for the first time, went out without a hat. We had a freak warm streak and the weather was in the 30′s, so I felt it was time. We were taking the kids to parents’ night out at our church and then Michael and I were planning to go out to dinner. It was nice to know that the first people who would see me bald (other than the people in my own home!) would be friends who would speak encouraging words to me.

Dinner was a little different simply because I could see the questions in some adult’s eyes. It made me wonder what was going through their minds. It wasn’t awkward, just different.

Since that evening, and as my hair comes in, I have felt more comfortable taking my hat off in public. It’s freeing, but I’m finding that my ears and still fairly bare head can’t handle the chilliness of being exposed, so I still often wear a hat indoors.

In our own little family, Rachael (6) has been the most sensitive to the changes my head has seen over these last several months. She’s been very protective of me and lately, each time I venture out in public without a head covering, she questions me as to why I don’t just cover it up. She is sure that people will think a woman being bald is weird! In a sense, she is correct, but I hope my openness and attitude toward this whole ordeal shows her, in a very real sense, that being different is perfectly normal!!!

I am currently just shy of 8 weeks since my last chemo treatment and I made a little video for you.

 

Before and after makeup February 9, 2015.

I am not seeing any new eyebrow growth yet, but my eyelashes are definitely coming in. I never lost all of my lashes, but was left with only a few hairs on the top lid of each eye, with my left eye having almost double the lashes of the right… Those are the longest ones you see in the video.

Just for comparison’s sake – here’s a before and after makeup photo from yesterday.

I told you back in October that I had purchased a wig… well, I have never worn it for more than a few minutes! My head just doesn’t like it. I have some very quirky physical sensitivities and this appears to be one of them. Oh well, it’s cute, but I just couldn’t make it work.

I have experimented with all sorts of beanies, winter hats, and scarves. It’s fun! I’ve learned how to tie regular scarves into fun head coverings, have crocheted several new hats, received hand made hats as gifts, and bought a few new fun ones, too.

Head coverings

Why I Share So Much

Sunset in Anchorage on February 1, 2015

If someone had told me a year ago that I would soon be publicly discussing my reproductive organs and breasts, I likely would not have believed them and probably would have flat refused to do such a thing. Yet, here I am, 7 months after finding a lump in my breast, discussing those exact things. It’s a twofold experience. Surreal, but also something I feel is incredibly necessary to talk about.

Surreal for SO many reasons that are difficult to articulate – which in itself makes sharing a little tougher. Not difficult because I don’t want to share these personal experiences, but difficult because emotions are a challenge to convey in person, but in writing, they lose something more. I will happily sit with you and chat about how difficult, yet blessed, this experience has been. You might even be able to feel just a tiny bit of my journey personally in that setting, but when I write out these happenings, you can’t see my facial expressions, or read my body language, hear my nervous, too-often, laugh, watch my shifty eyes lack contact with yours, or even hear the break in my voice as emotions come to the surface. When I write of events or something I’m dealing with, I feel as though I’m simply telling a story. Sometimes, not even my own story. It’s as though I’m detached from the events and the emotions get thrown to the side for the sheer conveyance of details. It’s hard for me to connect the emotion with the event in writing, so I just leave it out. Even though I’m not very good at sharing in that way, I still do feel it is absolutely necessary.

It is necessary that I share because I am blessed to have caught the difference in myself early. If sharing each piece of my journey reminds you, or any woman, to check herself and know what is abnormal, then my sharing, meager as it may be, wasn’t for naught. I promise to never become an annoying public service announcement – I’m not sure those are truly effective anyway – but breast cancer is real. Breast cancer doesn’t discriminate based on age either. It’s not something I had ever considered at the age of 33. Not even of the age where the medical community recommends mammograms (though I’m still iffy on those, too).  Breast cancer can be scary and completely overwhelming, but finding and treating this type of cancer early leaves most women with an outstanding prognosis and survival rate.

I hope you will continue to follow me on this journey, and share what you’ve gleaned from my experiences. I’m moving into a stage of treatment that will be less intense and invasive. But that doesn’t mean this journey is finished. And it definitely doesn’t mean that it will ever leave me. I will still be sharing the ins and outs of treatment with you, but I am also finally feeling like sharing more about our regular lives with you, as well.

I know this blog was [mostly] dormant for more than a year before breast cancer showed up and forever changed our lives, but I promise I did use to write about normal life stuff, too!! I hope you’ll stick around and follow along as we weave more normalcy back into our lives.

I still also plan to show you my current hair situation, tell you about my ovaries, and my reconstruction plans.

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Christmas in a Different Light

What's Next?

Side effects and a prayer request

No Radiation

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