Not quite a million…?

I was a little anxious this morning to pull up my medical history for 2016. I watch the charges that come in regularly, the discounts that are given to insurance companies and what is actually paid. I am curious as to the different charges that each office bills and I want to make sure there aren’t any denials that sneak by me.

Let me first say that I am incredibly blessed to have insurance. Yes, I have an out-of-pocket expense but there is a cap on it each year. My medical insurance coverage is different than my prescription coverage. For some reason my prescription coverage is not available for me to pull today so I’ll do that another day and share it for sure.

All of the charges have not come in for 2016 and all of them have not yet been processed. But as of this morning, my insurance has been billed $896,584.71. This is the retail cost of every charge. If I did not have insurance, this would be the bill (although separate from each provider) that I would be asked to pay.

There was an insurance discount, which was $548,532.79. This is the discount amount contractually agreed upon between my insurance and the in-network providers.

The amount that my insurance company paid, which excludes my out-of-pocket costs, is $261,190.61. My deductible and coinsurance for 2016 was $3250 for medical expenses.

This number astounds me. Again, I am incredibly grateful for having coverage. Even with my out-of-pocket expense, it’s nowhere near what is billed to my insurance company.

Life with cancer is not easy. As I mentioned the other day, every headache, back pain or cough is cause of concern. Scans are frequent, I have regular follow ups with my oncologist and radiation oncologist and then I have another half dozen or so doctors that follow my care. And that doesn’t even include the oncologists at the different cancer centers that I have visited. Thankfully I can communicate with them via call or text for the most part now that we have established relationships. And then there’s the regular visits for wellness exams, physicals and colds.

Then there’s the day-to-day cost of this disease. Outside of prescriptions (which I will cover when the website has the information again), there’s the protocols that I follow, which are supplements that I take 3 times a day based on meetings with an alternative medicine doctor (the visit and the supplements aren’t covered by insurance). That retail cost is somewhere around $1500 every 8 weeks. I have been using Band-Aids, gauze and saline for this radiation burn since August. The radiation oncologist provides most of the gauze and the saline and I buy the Band-Aids to cover the wound. There’s stomach medicine that I take regularly. Sometimes its anti-nausea, sometimes Imodium but mostly Senokot. There’s the lotion that is needed for the areas of my body that have been radiated ($14 for 1.7 oz, mixed with organic Calendula oil which is $10 for 1 oz). Then there’s the lotion that is needed for my feet, especially with taking Xeloda previously ($27 for 4 oz). I use a diffuser filled with different essential oils that run anywhere from $10 to $100 per bottle. I have to use special toothpaste (biotene). In 2015, I bought wigs to help cover and keep my bald head warm. I also previously and more recently purchased bathing suits that can hold my prosthetic. Oh, then there’s the cost of driving around town to and from all of these appointments.

My diet is significantly different now too. I buy organic as much as possible and eat a lot of fruits and vegetables. Juicing and smoothies are wonderful but come at a cost. I feel better physically eating what I eat now and wish I had started it long ago.

Then there’s the travel to different centers. Though we try to make the most out of it by sight-seeing, the reality is that we are traveling in the hopes of finding a doctor or treatment that can help prolong my life. These visits come at a cost, emotionally, physically and financially.

It’s a full-time job in itself.

I am sharing this information because it is simply the reality of cancer. These are just the things that come to mind as I type and I am sure that there are many other costs that I’m not including. Are some of these things that I am doing to help me live a longer, stronger life? Yes. Are some of these things that I am hoping will help me outlive my prognosis? Of course. Are some of these things necessities? Absolutely.

What do people do that cannot afford these costs? Let’s say that the protocols and the organics and the lotions aren’t included and it is simply the cost of treatment…treatment that will hopefully work to save their life. What if they don’t have insurance? What if they can’t pay the cost of care? It scares me. Cancer is not something that any of us ask for or expect – especially at 31. But it’s here and we make the best out of it while we can. But what if that best isn’t an option because you can’t afford care? It terrifies me. I don’t know what people do.

What if people can’t work? I have been blessed with the ability to work throughout the last year and a half of treatments and surgeries. But I won’t lie, it takes its toll. There is continuously a question of whether or not you will work until your life ends…or until you simply can’t manage it anymore. Life is exhausting without cancer. Add in a family, a toddler, a life that you are trying to enjoy and top it off with cancer and you are bound to be in bed with your toddler at 8pm every night. But work is your insurance coverage and your paycheck is your ability to live the life that you want to live while you feel well enough to do just that. Is there really a choice?

I have been extremely blessed with financial gifts that helped to cover most of these expenses. There are so many people who care about us and want to help. For that, I am eternally grateful. I honestly don’t know what we would do without people like you.

This is the reality. I have debated on a post like this for months but thought it was important to share the realities that are breast cancer. And the reality that with metastatic breast cancer, those costs will never disappear. Each year, deductibles go up along with premiums and people like myself know they will reach their out-of-pocket expenses…likely in the first month. It’s not something that I can change and yet it causes a lump in my throat. I am SO GRATEFUL for another year of life and yet I can’t help but fear the restart of my out-of-pocket costs. The costs of cancer care is enough to break even the most financially-fit person. I bet with my prescription coverage and the other expenses that I mentioned, I did actually reach a million dollars this year.

This is metastatic breast cancer. This is Stage 4. This is our reality. But, we keep living. We make do with what we can and we don’t go without. And we choose to live. Despite the costs of treatment, of cancer and of side effects, we continue to enjoy this life that we are so blessed to have. And you all should to…enjoy each and every beautiful moment.

Here’s to 2017…and LIVING.

The last sunset…

A Facebook memory popped up today. This is not unusual, of course, but they typically involve pictures of Jacob. They always make my heart swell, as he continues to grow so much each day. Today’s reminder was different though and it made me pause.

In 2012, Joe & I spent New Year’s Eve at the beach. We enjoyed dinner, a glass of wine and a walk down the beach at sunset. I have always been anxious to be off the roads early on a night like tonight. The picture was of us, smiling broadly, the beach behind us. The very last sunset of 2012 going down in front of our eyes. 

This year, we unintentionally did the same thing. Jacob woke up with a bit of a cold so we changed our plans. We ventured to the beach, enjoyed appetizers at the same restaurant and visited the beach. The sunset in front of us, closing down on 2016.

The amount of things that have changed in 4 short – or long – years is astounding. The restaurant itself went through a massive renovation and was closed for months last year. It was more of a hole-in-the-wall then than now but still just as good. The ocean has remained constant, with its waves crashing loudly, though I can just imagine what has changed beneath the surface. The sunset is equally as gorgeous and glowed brightly against the blue sky as the sun lowered itself down.

Then there is us. My mom joined us this year, which is the first time in over a decade that I’ve spent this night with her. I’ve gained and lost a few pounds over the years and the lines on my face have deepened with age, stress and tears – of laughter and sadness. I’ve been through many hairstyles – straight, long and bald.

We didn’t have the blessing of Jacob back then and little did we know, a year later I’d be proudly holding my belly as we watched the ball drop…struggling to stay awake.

I started a new job since then. Though the same company that I’ve been with, it has been both rewarding and challenging as I learn new things.

We bought a new-used car and our parents (my inlaws) bought a boat to keep us all busy and enjoy the water.

We have traveled to the Caribbean to celebrate my big sisters 30th birthday, visited Georgia countless times to visit my baby sister and her husband, had multiple trips to my hometown for visits with the people we love and trips around Florida to visit friends and local parks.

Life is relatively the same in terms of where we live and yet it is so very different. It’s hard to imagine life before cancer and even harder to remember life before Jacob. Our routines are so different than they were back then and our priorities are very, uniquely different.

We have made more new friends than we can count and though we lost touch with a few, we all found our way back to each other over the last year.

I have rediscovered my faith in God. Though I never lost in entirely, it has strengthened exponentially and I remain steadfast in my faith and love for our Lord.

Though the sunset is similar, the years between are memorable for so many reasons. Our blessings are unique and huge. We are loved by so many and love hard in return.

As this year comes to a close, remember all the moments – big & small – that you are so incredibly blessed with. This year comes to a brilliant end while 2017 lingers, waiting anxiously in the distance.

Happy New Year, everyone. I hope this year is filled with love, laughter and overwhelmingly wonderful memories. Keep spreading the love, my friends. Now & always.

Another blessing…

Although we went to the same hospital for my scan, my bone scan was in a different room. There was a weird beeping noise in the corner of the room. When asked, the technician explained that it was a Geiger Counter. It started going off because I walked in the room. Sure enough, as I walked up to it, it started beeping faster and louder. I sure was radioactive! I think back to my first PET scan, where I truly was radioactive. I can’t help but smile at feeling like a superhero. So much has happened since then and so much has changed. Superheroes may only exist in books and movies but I like to consider myself among them. I may not have their total courage, abilities and strength but I have their determination and fight. And that’s what I continue to need. I’m glad these scans are a reminder of that for me.

I had a brief text with my oncologist tonight. My chest CT is not yet in but the rest of my scans are. They show very little change! My bone scan picked up cancer in my left pelvis (bone scan was clear last time despite cancer showing on the CT) that it identified as new, however that same spot was reported on my last CT so it’s not actually new. Encouraging news!

I don’t know all of the details yet since all the results aren’t in but I’m breathing a sigh of relief at the news I’ve received so far. It means another scan is stable, another cycle of treatment can be given and another 6 weeks until I hold my breath once again. I’ll take it.

Thank you all for your love, hugs, thoughts and prayers. I promise you that they do not go unnoticed. I love you all.

Xgeva…and updates

When I was doing chemo last year, we would travel back to the treatment center the next day for hydration and a shot of Neulasta, which helped my blood counts be stronger. It was a shot in my belly and Joe (sometimes my sister) would be required to warm it up ahead of time so it didn’t hurt as badly going in. One time we forgot to warm it up and whew! I could feel the difference and still recall how much that shot hurt over the others. We always joked with the nurse about losing the $3000+ shot while warming it up. One of the nurses mentioned that she had actually thought she lost it once because she forgot that the husband was warming it up and panicked. Eek!

Today we traveled to the treatment center for me to receive my first (perhaps only) monthly injection of Xgeva. We know that I have cancer in my bones and the Xeloda also pulls nutrients out of bones, making them a bit more brittle. It was described to me that my bones currently look like scaffolding inside because of the cancer and the Xeloda working in them. The Xgeva will go in and fill in all the cracks with the right nutrients. Xgeva pulls Calcium and Vitamin D out of my blood to replace it in my bones and make them stronger. It is an anti-cancer / chemo agent to some degree but its main focus is the bones. I started taking prescription supplements as well, to replace the Calcium and Vitamin D in my blood.

The shot itself was barely painful at all and was actually quite small. It was in my right arm and I learned ahead of time to warm it up and that it should be done over a longer period of time so it is less painful (1 – 2 minutes). Thankfully the nurse knew these tricks too so I barely felt a thing. There shouldn’t be any side effects, though I know what to look for just in case.

Tomorrow, we head to the Mayo Clinic in Jacksonville. What was a “standard” appointment has now become critical to me since it will be my first discussion about which clinical trials are available to me here.

Two of the centers have reached back out to me and requested that I visit them in person versus over the phone. I am completely understanding of that but feel as though I’m in between a bit of a rock and a hard place. I’d like to know the names of the clinical trials each center has available for me (based on recent scans, tests, etc which have changed slightly since each visit) so I can research and determine what trials are most appealing. But I won’t know the actual trials until I visit. See my predicament? There is a great website calling ClinicalTrials.gov that lists out ALL of the clinical trials available so I have been using that to do research but it’s rather overwhelming. There is a lot of information, some that does and does not apply to me, and honestly a lot of words that I’m not sure whether or not they do apply (medical jargon?). There are also quite a few trials that are based on tests that I still have outstanding.

So, that is why I am super curious about tomorrow’s appointment. Local treatment makes the most sense but I will go wherever and do whatever I need to in order to receive the best prognosis and treatment. We will see what tomorrow brings!

Happy Wednesday, everyone!

Another whirlwind visit!

One of my very best friends celebrated her wedding day this past Friday! She has been planning this day for a year and a half (at least!) and I would not miss it for anything! Jacob & I were both honored to be in the wedding and everything was absolutely beautiful. Sheryl was the most amazing bride (and made things too easy for us bridesmaids!), Ryan was an incredible groom and Nick had the honor of walking his mom down the aisle. It was stunning, breathtaking and completely priceless.

Saturday we spent catching up with as many people as we could while in town! My sister and her family graciously opened up their home to everyone and we enjoyed snacks, drinks and the most wonderful company for a few hours! She even surprised me by giving everyone self addressed, stamped cards to mail to me whenever the mood strikes. I cannot express how meaningful a kind word is at what seems to be a random moment! It is seriously the best.

Today we ventured to church and were loved on by people who pray boldly for my family every single day. After an emotional and beautiful service, all of the pastors lifted my family up in prayer and boldly prayed for us some more. It was emotional, amazing and completely priceless. Lots of tears but even more tight hugs, which are so priceless to me!

Next we enjoyed a yummy lunch with my Momma on this cool fall day, a relaxing afternoon of snuggles and then it was time to pack up for the next adventure. I don’t know when we will be back but I am already missing everyone like crazy!!! 💚💚💚

My side effects

I’m almost done with my second cycle of chemo pills and today was day 12 of 20 (maybe 25) radiation treatments. So far, I have been incredibly tired but doing well. I knew to anticipate side effects and they have finally begun. 🙂

I woke up early Saturday to some intense heartburn and a sore throat. I knew from the last round of radiation that it was only a matter of time before it started again so I had started with one of my prior heartburn medicines but switched to taking both now. I also use the liquid Carafe every day in the hopes of it helping as well. If it gets bad, I have the “Magic Mouthwash” to numb my throat so I can eat (yeah…it hurts that bad). I know it’s a result of the radiation so at least there is an end of it in sight!

This morning I woke up and felt a horrible pain in the soles of my feet. I would equate it to walking on needles – it hurt! Thankfully, I lotioned up my feet, added socks and slippers to help. Walking barefoot was definitely not an option! The slippers and cushions of my shoes helped massively today so it made walking much easier. One of the biggest side effects of the Xeloda (chemo pill) is hand and foot syndrome, so it sounds like I have the foot part. No sores, just redness. A quick text to my oncologist’s nurse and she confirmed that it would get better on my week off – which starts Friday! I see my oncologist next week so I see if he has any tips or tricks.

My skin is turning into a sunburn, though it is happening later than expected! Today my armpit started peeling as well so I am moving past the lotioning only and using the lotion, silvadene cream and xeroform pads to keep my skin hydrated and bandaged up. I can’t apply anything before radiation so the early morning appointment works well. The peeling doesn’t feel awesome but I know it is a necessary part of the process. I am curious, for anyone who has gone through radiation treatment before, what was your process? I’m wondering if there is a better way to bandage myself up or something different that I should be using. 🙂

My headaches are starting to get better! I’ve been fighting some pretty intense headaches for the last week (since the Gamma Knife) but today they have lessened significantly and for that, I am grateful.

I saw the radiation oncologist yesterday for my weekly appointment. Everything looks great!!! My skin looks better than expected two weeks in (the nurse even commented about how beautiful my skin is). The cancer on my skin is almost entirely gone and my lymph nodes are “melting away”!

So despite my side effects, I can’t help but SMILE! Everything that I am doing right now appears to be working against this horrible disease. I will continue to fight for NED!!! And from the sounds of it, I have to smile at the possibility!!!

I’m just me.

I updated the “Me” section of this page today. Reading what I wrote mid-February was hard and yet rewriting it today felt right somehow.

It’s hard to believe that this blog has been around since August 15th of last year. I started it in the hopes of sharing my story, my journey, with breast cancer. It was a chance for me to express myself – my highs and my lows. It was an opportunity to be me and share my updates & experiences with the world. I had been procrastinating on starting a blog for years and it seemed like the perfect opportunity to do just that. So I started.

The last year has been one of the hardest, most challenging and yet most rewarding experiences of my entire life. I have grown as a person, a friend, a mother, a wife and so much more. I have cried more than I thought possible, felt worse than ever and sat up worrying about the future. And yet, those tears have been filled with more love than I have ever felt, I’ve made my body stronger than it once was and I no longer live in fear of the future (well, I try!).

This last year has taught me more than I learned in my 30+ years of life. I have laughed harder, smiled bigger and hugged longer than I ever thought possible. The love that I feel wrap itself around me on a regular basis is nothing short of amazing. It is nothing short of a miracle. This experience, this blog, this journey…no, I did not ask for any of it. But it is here. And it is mine. And I will embrace it for what it is and make the very best of every moment that I am granted.

I often hear people ask me about being brave or inspirational. My reply is simple…I’m just me. I am the me that I thought I once was and yet am somehow completely different. I am the me that I feel I am in my heart. I am the me that is true to myself. I am the me that I once dreamed of being. I am the me that will continue to be brave and strong and inspirational. But I am just that – me.

I hope you all continue to follow me and my journey. I hope that you find my posts to be inspiring or insightful. I hope that you all continue to inspire me, the way that you have continuously throughout this last year. We don’t know what the future will bring us but what we do know is that we can love hard now and always. Keep spreading that love, friends. It is what keeps me – and the world – going.

My products

Products

I’ve been slowly transitioning to all-natural and organic products this year but made it a top priority after my recent diagnosis. Looking at labels has become quite horrifying so I have been focusing on researching different products and reviews. I’ve received lots of questions about the different products that I’ve adapted to so I thought I’d share a list below. Most I have bought on Amazon (thanks to my sis for having Prime!) but some I’ve found at Target or the actual website for the product. I like to compare prices with shipping but honestly, Amazon’s 2 day shipping typically wins out. Yes, I had massive sticker shock initially! Some of these products cost a small fortune but when I compare the ingredients, it is completely worth the cost – especially when I learn about how well they all work and the research behind using those products versus others.

Feel free to reach out with any questions and I am happy to help!

    • Bali Secrets Natural Deodorant – I have a tendency to sweat a lot so I’ve used my fair share of prescription and deodorant/antiperspirant combinations in the past. I’ve been using this particular deodorant since before my initial radiation and I love it. It received excellent reviews and I am happy with the scent! There is research to suggest that antiperspirants cause breast cancer and although I don’t know the validity of it, it is something that I prefer not to risk. Living in Florida, I usually only apply once a day but if it’s a full day of heat then I may use it twice. I carry it in my purse and keep it at home. I love this stuff!
    • Lindi Skin Soothing Balm – I use this to ward off hand and foot syndrome with chemo pills. I’ve only started using it this week but I’m in love with the softness of it. It seeps into my skin and makes my hands and feet feel wonderful. It doesn’t stay on top of my skin like many of the creams that I have used.
    • PEDS Women’s Socks and Sakya No Show Premium Cotton Socks – I use these with the lotion above. I read that lotion and socks may keep in the moisture and help keep feet hydrated throughout the day. So I have recently adapted to lotioning up and wearing these socks all day long under my shoes. I also lotion up and wear regular socks at night to keep my feet hydrated. I just started my second dose of chemo but I am hopeful that this combination will work. I also wish I found these socks a long time ago because I am completely obsessed with them!
    • My Girls Skin Care Cream Radiation Burn Care – I started using this cream on my radiation areas this week. It is much lighter than the Eucerin and calendula cream that I was using previously. I mix Calendula oil in with this cream and it seems to hydrate my skin quite well. I’m hopeful that it will continue to work!
  • Herb Pharm Certified Organic Calendula Oil – I’ve been using this Calendula oil since I started radiation and I love it. I originally mixed it with Miaderm, then Eucerin and now My Girls. Although My Girls has Calendula oil in it, I like to mix it in since it is supposed to work wonders.

 

  • California Baby Calendula Shampoo and Body Wash – I have been using this body wash and shampoo on Jacob for a while now. After brain surgery, I was advised to use baby shampoo for a while and switched to this. I love it! It feels great on my head and lathers nicely. I will definitely keep using it.
  • Lush Retread Conditioner – I have been using this conditioner since May I am in love with it. It works amazing and smells wonderful. I wish I had found Lush sooner!
  • Lush Dream Cream – I have been using this lotion on my skin since May also and it smells like key lime pie. I love it!
  • Simply Organic Wax Pomade Hard Wax – The airport threw away the hair gel that Jacob & I have been sharing recently so I was forced to do some research on a new product. This is a little thicker than I normally use so a little goes a long way. My hair is less hard and has a lot more curls now – which I love!
  • Castile Bar Soap – Gentle Unscented with Organic Cocoa Butter and Organic Olive Oil – I started using this soap a few weeks ago when I ran out of Dove. I did some research and it received excellent reviews. I love the way that it makes my skin feel and it lathers nicely. I will definitely be using it going forward!
  • Antibacterial soap – I purchased all-natural soap yesterday and it will be arriving tomorrow. I am anxious to give it a try but it received great reviews so I will keep you all posted!

That’s all for now. Are there any other products that you all can recommend?!