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!

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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?!

Boston! 

What a weekend! Though totally a whirlwind that flew by as expected, it was incredible! Friday night we enjoyed an awesome dinner at this place called Life Alive in Cambridge that serves all natural body fueling food…no one was disappointed. Completely delicious, we need them in Florida! 

Saturday we spent the morning at the aquarium (little man is obsessed with fish and turtles!), walked around Quincy Market and enjoyed the gorgeous day. It was about 75-80 degrees out and I don’t think the weather could have been more perfect. It was beautiful and the seaport was spectacular. Jacob loved watching all of the boats coming and going! 

I practiced pictures on the fancy camera but have not uploaded yet. For now, I have a few phone pictures to share! The best part of the entire weekend was having family & friends take the drive out to see us. The time spent catching up, laughing and talking about everything under the sun is completely priceless to me. The trip to Dana Farber was awesome but the weekend with the people I love means more than words. 💚