A shooting star

As she gazed out at the night sky above her, the sound of the ocean filled her ears. The waves crashed against the boat and themselves, causing a gentle swooshing sound. Darkness surrounded her, the only light reflecting from the ship and the stars above. The moon was but a sliver above – God’s thumbnail, her love told her.

The stars seemed endless. Their bright twinkles lighting up the sky above her. The stark darkness of the sky behind them made the stars stand out even more, appearing as if they were floating amongst the night sky. They didn’t form rows, rather shapes of all different sizes. Some seemed larger than life, others just a freckle in the sky, barely seen and yet there.

Though sporadic in their positioning, their organized chaos was mesmerizing. She stared above her, the sparkles that lit up the sky seemed to never end. Her mind shifts to what created those very stars and the possibilities that they themselves created. The hopes and dreams that they represent are both inspiring and limitless.

She reached for her glass of red, feeling the warm night breeze on her skin. Glancing to her right, she smiled at him. He smiled back and the stars seemed to shift slightly above. Her heart melted just a little. They both turned back their gazes at the sky above them, their smiles remaining.

A thin line darted across the sky and they both gasped in awe. Short but nevertheless there, a star burned brightly through the night sky then burst before blinking out in the night. Its journey ending in a blaze while the two of them watched from millions of miles away.

 

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.

Awesome.

I started this post with a story about this morning but honestly, I have no words. My radiation oncologist just called to discuss the CT I had this morning of my neck and chest. It looks awesome.

Awesome. That is the word she used. More than once.

We’ll discuss more when I see her tomorrow but basically, the areas where the cancer was infiltrating are melting away. Even the portions where she is not radiating, the Xeloda is doing its job and attacking it head on.

I can’t even type this without crying. My scans look awesome.

Awesome.

It’s an AWESOME day, my friends. We continue to pray, hope and love!

Taking a break

More radiation nitty gritty talk today, folks!

Showering in the morning is rough. I have to remove the leftover lotion from my skin but everything is incredibly tender. Not to mention it itches like crazy. Like, the worst mosquito bite of your life, crazy. And yet if you itch, you are instantly in pain because everything hurts. So no itching despite how bad it itches. Ouch.

Imagine the worst sunburn that you have ever had. Now imagine that you have road rash on top of that sunburn. You know everything is red, peeling, open, trying to heal, etc. It dries out quickly so you try to keep it lotioned up as much as possible. You have to be careful moving and remember that it hurts to move a certain way because of the burned area. That’s about what this radiation feels like. I’m getting a larger dose than normal and I’m on Xeloda, which magnifies radiation too. So it’s likely worse for me now than most. It’s definitely stronger and harder than my first round, and I did that for 6 weeks.

It takes me at least twice as long as a normal shower just to wash my radiated areas. I typically don’t take pain medicine until after because I want to get close to the timing for radiation. The radiation itself doesn’t hurt, but my skin is dry and lifting my right arm up is quite painful. So needless to say, showering hurts. Toweling off is just as fun because everything is sore and I have to pat dry but be super slow and careful in the meantime. It’s a long yet necessary process.

I had the weekend off from radiation and I know the side effects lag behind a bit so though I expect things to get worse, I was super exciting that nothing bled in the shower this morning. Silly, I know, but this was a big deal for me and I was excited to tell the technicians at radiation that things are healing despite continued treatment. As I changed into the gown at the center, one of my wounds opened and immediately started to bleed. Dang it, there goes my excitement! When the technician came in to get me, I joked with her about how excited I was to tell her that I wasn’t bleeding and that it had just started. Well, let’s remember that everything happens for a reason, Meg.

The technician didn’t like the bleeding and called in the doctor to take a look. Of course, it’s to be expected and my skin looks rough but like it should considering all that it’s been through. After checking me out, the doctor asked if I wanted a break from treatment. My eyes lit up. Um…yes?!

We talked at length about my upcoming travel, the 3 remaining days plus boost and my great response to treatment so far. She shared that sometimes when people react positively at this point, she stops treatment entirely and other times she finishes it out if the patient is up for it. I, of course, shared that I am up for whatever she recommends but the break is certainly welcomed.

So, we decided to take a few days off. Though my skin will look a little worse in the meantime, it’ll give me a break from the effects of treatment and a few extra days of rest. In the meantime, I’ll have a CT of my neck and chest to see how things are progressing with treatment (particularly my lymph nodes) and I’ll see her again on Thursday morning (post-CT) to discuss what the treatment path will be.

Although part of me wants to push through this and get the last 3 done, I am glad for the break. It is certainly welcomed! I am anxious for the CT scan too, as I anticipate it to be good news all around…though time will tell!

That being said, I am going to lotion up, apply my super cool netting and nap, nap, nap. It’s a good day, friends. And your prayers for this week are being answered already!

This is me.


One of the awesome ladies that follow my blog mentioned that she used a mesh netting after radiation everyday. I asked about it this week and my goodness, it’s amazing! I’ve been wrapping myself in multiple ace bandages that wiggle and come undone. The netting is one piece that Joe cut holes into for my arms so that it holds the bandages up by my neck. I spend my days and my nights like this. I used to take a few hours off from the netting and just use lotion but unfortunately the open wounds didn’t like that so much, so it’s netting all the time now. It works wonders though!

I’m learning to make sure I take pain medicine before applying the lotions and such. I am so ridiculously blessed to have Joe help me with everything and for having him in my life. The process itself takes 20 – 30 minutes a pop and frankly, there are usually tears and some curse words from me. God bless that man for dealing with me at my worst. I feel tremendously better once everything is applied, it’s just a matter of getting to that point.

So this is me now. I  have enjoyed my two days off but I am ready to power through the 3 remaining treatments and discuss the timing in the last 5. And frankly, I hope I never have to deal with this again! NED, anyone? 😉

Enjoy this day, my friends. I plan to rest and prepare for the week ahead! 💚

A matter of perspective 

Today is a rough day. My radiated area is very painful (thank you for pain medicine) and I don’t feel great. I’m a little nauseous and a bit light headed so I’ve spent a lot of today sleeping. It’s hard to be in a “funk” but it happens to all of us. I just keep reminding myself I’m almost done with this part.

As my boys nap and I settled in to sleep myself, I remembered that I had my blood work done this week. My normal blood work comes back within minutes but my oncologist also runs tumor markers, which take a few days. I debated on whether or not to pull up the results online and decided I wanted to know where they are. Oh my, I am glad I did.

My oncologist runs 2 tumor marker tests, one of which is called a CEA. It is an indicator of metastatic disease.  Last September, I had cancer but it wasn’t widespread. My CEA was 0.9. Anything under 3 is normal. In May, I was at 2.7; higher but still normal. On July 11, the day of my biopsies, my CEA was 13.1 – yikes. Higher than 3 – something isn’t right. I started Xeloda on July 27. On August 10, my CEA was 26.5 – double yikes. Way high and I was on Xeloda…first cycle, but scary nonetheless. I didn’t give it another thought because I knew I was just starting Xeloda and needed to give it time.

So my heart raced as I pulled up the results today. Although I know I can’t change the number, it’s scary to see it for the first time.

On September 6, my CEA was 7.9.

I can’t even type that without crying. 7.9. You read that right.

Yes, it’s still above 3. But I literally started my 3rd cycle of Xeloda yesterday. And my number dropped that significantly in a month’s time. A month!

So today, I am reminding myself about perspective. A year ago this time, I was doing IV chemo and was down for a week at a time. A month ago, I hadn’t started radiation and my tumor markers were up. Today, the side effects suck but radiation is almost over – almost!  The days are sometimes long but the weeks fly by. I will be healing from radiation in no time and only doing Xeloda. I’ll continue on Xeloda for as long as it works – and we pray that those numbers drop and stay dropped!

I cry today because I am so incredibly grateful for those numbers. To say how blessed I am would be an understatement. The fear of the unknown is a scary thing but those numbers don’t lie. It’s working, my friends. It’s working.

And it’s worth all of the side effects to be here today! 💚

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!!