All done! …sort of

Whenever Jacob finishes something – dinner, a puzzle, a book – he says “all done!” emphatically and waves his little hands in the air. It’s incredibly adorable and I find myself mirroring this habit of his back to him.

At radiation each morning when the whirl of the machine shuts off and the “Beam Off” light flickers dark, I can’t help but smile and think “all done!” Even if just for that moment or that day, my treatment is over.

Today, Joe & I ventured out to see the radiation oncologist and discuss my CT scan yesterday. My scans showed that my cancer has “essentially vanished”. Say, what?! We are stopping the standard radiation treatment going forward, especially with my upcoming travel – yay! It is undecided whether or not to do the boost treatments to my lymph nodes and chest but we have time to figure that out. Even the areas outside of the radiation field are disappearing.

I cannot tell you how much I needed that news today. My chest is certainly worse for wear and this week has been hard. I basically have no top layers of skin in the radiated areas, which is why showering and lotioning is so ridiculously painful. This week is supposed to be the worst and I will begin to heal hopefully as soon as this weekend. I am praying for that healing!!

I am not considered NED currently, as I haven’t had full body scans to confirm anything and my CT was of my neck and chest only. And I will never truly be cancer-free. The radiation oncologist agreed entirely, and stressed the importance of, visiting the different centers that we have been going to and that we have planned. At some point, the Xeloda will stop working and I will need to consider next steps. One of the things that I am learning at the different centers is that I do have options – including and excluding clinical trials. There are things that I can do as “standard treatments” before a trial or I can consider the trials that are available. Each center has been giving me the trial names to research in anticipation of the day that they are needed. And research is exploring more options every day.

So yes, I am a stage 4 metastatic breast cancer patient. And yes, this has been one of the hardest weeks of my life. But hearing that my cancer is not appearing on scans and that this pain has a purpose makes everything worthwhile.

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Slime?!

I’m talking about radiation in a bit of detail today so if you don’t want to hear the nitty gritty, feel free to skip this post.  🙂

A few years after Ghostbusters came out, I became obsessed with it. I love everything about the movie but my absolute favorite was the Stay Puft Marshmallow Man. I would watch the entire movie just to see him at the end. I had a large not-so-stuffed version of him that I played with regularly…he was not so white by the time I was done playing with him! I wonder what happened to him?

My other favorite scene – and by favorite I mean love to hate scene – is the ghost in the library. They initially find the card catalog with slime all over one of the drawers and take it back for analysis. I grew up going to the library regularly (pre-internet!) and the setup brings back so many memories, minus the slime of course. The Ghostbusters eventually find Slimer in the hotel – and get slimed in the meantime. It cracks me up to watch, actually. This is totally one of my favorite movies…and I must go watch it again now.

Anyway, I didn’t receive radiation treatment yesterday. I was on the table for about 45 minutes and for some reason, we couldn’t get me lined up properly. Usually, the technicians line me up first, take pictures, then apply the bolus, take more pictures and treat. It took about 30 minutes and some up & downs to line me up before the initial pictures and after the bolus was applied, I still wasn’t perfect. I am grateful for their diligence in ensuring perfection. Eventually the doctor came in and chatted with me. Although she could treat me, I had already been on the table for 45 minutes and they needed to start over, meaning it would be at least another 45 minutes. Frankly, I had never been in so much pain during radiation before so I was grateful to get off the table.

My appointment is early morning, which I am very happy about. I lather up all day but I can’t apply any lotions 4 hours prior to treatment. Before bed, I cover myself with my layers then shower in the morning and wash everything off. My skin is incredibly dry afterwards, especially in the radiated area. Since my skin is bright red and peeling, it hurts something fierce…particularly in the morning because everything is so incredibly dry. When I had radiation to my left side, it was painful for sure but since I had my lymph nodes removed on the left, a lot of the feeling in my armpit was (is) gone. On my right and chest however, I have a lot more feeling so this go around is more painful and quite different. Plus they are hitting me at 25% stronger than my left side because of the metastases. The pain has been getting a little worse each day but it snuck up on me yesterday and I was barely able to lift my right arm for radiation. I have pain medicine but it’s not something I take before radiation because I drive myself.

The bolus is taped to me each day and I am typically taped to the table. This week, the technicians have been careful because of my skin beginning to peel. When the doctor and technicians attempted to take my bolus off yesterday, my skin decided to go with it. It didn’t feel awesome and thankfully they had already avoided my armpit entirely. It took them probably 5 minutes and a lot of apologies to get the bolus off. I smiled through it and talked to them about what to do going forward to focus on something other than the pain. No more of that bolus – or tape – for me!

Needless to say, the doctor was insistent on my getting a ride from now on and making sure I take extra pain medicine just before every treatment. So today, I did just that. The old bolus was tossed yesterday and today we used a different kind. I had to touch it, of course, and the first thing I thought of was Slimer! Remember the slime you had as kids, I think it was from Nickelodeon? I would compare it to that too. That is literally what it felt like. It used to be green but is now hot pink!

The technicians took the “slime” in powder form, mixed it with cold water and shook it up in a bag for 4 – 5 minutes. The areas that they were radiating were covered in plastic wrap, then the doctor and one of the technicians took the slime and created a bolus on me. The process was labor intensive for them and my neck & hairline were slightly covered at the end but you can’t help but laugh at that! The bolus they created was used to treat me and then they wrapped it all up in more plastic wrap so that it stays moist for my remaining treatments. It was an interesting experience today! Also, thanks to the pain medicine ahead of time it barely hurt at all – whew!

Today was treatment 17 of 20 – almost done! Then we will talk about when to do the 5 boost treatments; right away or wait? I have upcoming travel (Sloan, Emory and a wedding!) so we will have to talk through the pros and cons of that. In the meantime, I am learning to stay on top of my pain medicine (I try to power through it but this is just not something to power through anymore) and remember that the end is in sight!

Now, I am off to see where I can watch Ghostbusters for free….Happy Friday, friends!!

Fri-yay!

I know this 3 day weekend has its own purpose but an extra day off from radiation is so exciting to me! The radiation itself is not painful during treatment but my skin is quite red, like a bad sunburn, and my chest has also started peeling. But, we are halfway done-ish! I’ve had 14 treatments and we are doing either 20 or 25. So close!

It’s my week off from chemo pills – wahoo!! My feet are tender to walk so I’m anxious for improvement over the next week. Cushioned shoes help – and I am slightly obsessed with Sanuks so it works out well!

I took my last steroid on Saturday, which is exciting in itself. I am incredibly swollen all over, which will take weeks to go away, but I am sleeping a little better each night. I don’t wake up for hours at a time anymore and can usually fall back asleep within an hour of waking up. I’ll take it!

Sleepless nights have been a cause for overthinking, which I do. 😉 Today though, I sit in awe. Every day of my life, something happens to remind me that I am on this journey for a reason and a purpose. No, it’s not easy. And frankly, it sucks at times. But it’s my journey and I am going to make the best of it. The love and support that I receive from all over the world continues to amaze and inspire me.

Yesterday, I mailed out a wristband to South Carolina and I thought…I wonder where else people are from?! So today I ask you, where are you reading from?

“For this purpose I was born and for this purpose I have come into the world” (John 18:37).
Have a wonderful weekend, everyone! Spread that love!!!

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.

August 5th

This day will forever remain in my heart. It is the day my son turned a month old. It is the day he celebrated 13 months. And it was the day I received my cancer diagnosis.

I remember my husband, 13 month old and I sitting outside daycare at 620am. They opened at 630am and we had never arrived that early. Our appointment was downtown at 7am and I was clearly anxious. We dropped him off, the summer warmth hot on our skin as the sun rose in the sky. We traveled in silence to the breast care surgeon. Checking in with smiles, we waited for the doctor. I joked with my husband that we didn’t want to hear words like “invasive”, “cancer”, “carcinoma” or “metastatic”. Little did I know, our world was about to change forever.

As we sat in appointment after appointment, receiving instructions, blood work, results and more scans, the tears came and went. At some point the numbness settled in and I sat in awe of the future. Unsure, scared and yet determined. Losing was not an option.

This last year has brought heartache, tears and pain. But it has also brought more happiness than I could have ever dreamed. The person that I was a year ago is no longer here. She is stronger than she ever thought possible. She is determined. And she is willing to give this gift of life all that she has within her.

I slept last night. Almost an entire, uninterrupted night of sleep. I awoke with a smile and little man has been singing all morning. My husband read to him while I dressed for work. All is right in the world.

The tears come today but not because of the last year of changes in my life and not because of the unknown future. The tears come today because I am blessed with this beautiful gift. This day, my family, my friends, this life. Today truly is a blessing for each of us.

So on this 5th of August, reflect not on the past. Rejoice in the changes that you have made in the life that you want to live. Enjoy this day and every day, always.

Spread the love, my friends! 💋 💚💗

Thursday updates

My first afternoon visit was with the brain radiation doctor. Imagine my excitement when I learned that the brain radiation is a ONE time thing! Say, what?! They will use a gamma knife process since it is on a smaller location. The procedure itself will be an outpatient hospital visit that is rather lengthy (530 am – 2pm-ish) with the setup, procedure and discharge. But it’s one and done – yay! They will target the area of my brain that had surgery and radiate the area to keep the cancer away. Side effects that day and the following are headache, swelling and temporary hair loss from the area. There are long term effects regarding the area but overall, it sounds like the rewards outweigh the risks to me. I do have a question written down for my oncologist about my chemo pills, as the radiation oncologist recommends against taking them the day before, day of and day after the procedure.

My second afternoon appointment was to have my stitches removed – wahoo!! The nurse agreed that they were definitely ready to come out (and itchy!). A few snips and they were gone! My head is healing well, I have no neurological defects and I can resume normal activities like driving. Yay!! The neurosurgeon that performed my craniotomy will also fit my head for the headpiece that I will wear the morning of the radiation procedure.

Today was a good day, friends! Now, what to eat… 🍊🍉🍋🍌🍍🍎🍏🍐🍑🍒🍓🍅🍆🌽🌶🍄🍇😉

Today is a new day. 

Yesterday I went to work. I know, I know, it’s a lot on my plate. But the sense of “normalcy” and routine is good for me. It was a nice day, filled with laughter. At the end of the day, I made phone calls and did some running around for medical records. My level of frustration spiked as I received what I would refer to as the “run around” regarding the beginning of radiation treatment. I completely understand protocols and controls and for the most part, I have let them run their courses as needed. This seems to be a simple logistical error that is causing me stress. Long story short, I have not yet begun radiation therapy and I am awaiting the start date (it’s not the doctor). To say that I am anxious to begin this treatment would be an understatement. I am glad for the systemical chemo pills to work their magic but I will rest easier knowing the pain of radiation will prevail. 

That being said, I went to bed frustrated. It’s not something that I do often and I felt a lot of defeat. There were tears cried and frankly, I am mad at myself for allowing it. The day was lost on my moments of frustration. 

But today is a new day. 

I’m up early, blaming the steroids, and I’m reflecting on how blessed I am. There is a reason and a plan in place for me. Although radiation is not happening on my time, it is happening on the time it is supposed to and there is quite literally nothing else that I can do at this point. I simply need to let go and let God. No, I am not giving up and I’ll make whatever calls that are needed for continued progress. But I am going to trust and have faith that there is a reason and a way that this is happening, even if I don’t see it just yet.

So I say again. Today is a new day. It is a fresh start. A new beginning. The world as we want to see it. It is the start of something new and exciting. A day of acceptance, joy and laughter. It is a day that I will love and a day that I will fill with happiness. Because this day is mine. It is mine to enjoy and mine to hold dear. It is mine to embrace proudly and triumphantly. It is a new day indeed. 

Spread the love, friends. Make someone smile today! 💋