My apologies for the late post…

It’s been a long week post surgery. The surgery itself went quite well and frankly, I felt wonderful for the remainder of that day and most of the next. Then the weekend came and it was back to the insane headaches that leave me in tears in bed for days. I finally decided through gritted teeth and tear stained cheeks that it was time for a hospital trip. It’s not that I thought cancer was taking over my entire body but something has to give with the way that I’ve been feeling lately. 

Joe called my oncologist and spoke to him Sunday. As it turns out, my nurse practitioner was doing her rounds at the hospital that we were planning to go to so she was able to set up all of the admissions paperwork and initial consults for me so that there wasn’t any waiting around and I was guaranteed a bed. So, a bit of light packing later while Jacob finished a nap and we were on our way. I won’t lie, the ride there was horrible and the idea of an ambulance each way quite tempting but I thought better against it. We dropped little man off with Grandma (he was a little too quick to say good bye to us and go play) and went to check ourselves in.

We’ve only been here since Sunday night but I had my first official brain MRI with tissue expanders removed – wahoo!! I had a breast MRI when initially diagnosed to confirm tumor placement but that’s all folks. A brain MRI was exciting and nerve racking to finally have done. And guess what? It’s ALL CLEAR!!!  That’s right – I said it – ALL CLEAR!! TOTALLY STABLE FROM ANY BREAST CANCER IN MY BRAIN!! How awesome is that?! God is good, my friends. God is GOOD

Now, that doesn’t quite tell us what is causing the headaches – the horrible, debilitating headaches – but it does tell us that it’s not from a tumor in my brain. Hallelujah!
There is talk about wanting to do a spinal tap / lumbar puncture to grab a sample of the spinal fluid to be tested for infection or cancer. There is also the possibility of the headaches being a side effect of taking Afinitor or Afinitor mixed with Xeloda. So for now we are taking a break from those to see if it helps. Basically, we are trying a bit of everything to see what helps…which I’m ok with because of how unbelievable these have been!

We have received an incredible outpouring of love and support over this last week – even when folks didn’t know what was happening in our lives. We can’t thank you all enough for every drop of that LOVE!!!

Almost all of the crosses that have been ordered have already been shipped and received – I’m just LOVING the pictures showing up of them, keep them coming! Please send me a message if you think you should have received yours by now and haven’t.  💚

I’m not entirely sure when I’ll be released but I anticipate being behind on life a bit when I am out. I also know I’m behind on responding to texts, emails and messages so I am sorry already for that. I appreciate your patience as I work to get caught up, though it will take time. I feel like “relaxing” in the hospital should be just that….but it’s not. I spend the day covering my face from these insane headaches, trying different combinations of medications to to stop them, figuring out what to eat  without vomiting and trying to sleep in between. Blech.

Thank you for your continued prayers, support and love. 💚💚💚

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Meghan’s Cross 💚

Over a year ago, a dear friend of mine handed me a gift that her husband picked out for me. It’s a cross that he made himself. I wrote about it at the time because it meant so much to me. It’s no secret that I was finding my faith again after diagnosis and that the last year of my life, it has grown even stronger. I wear the cross they gave me regularly because I love it and because it reminds me that God is by my side every step of the way – and so are my incredible friends.

See, these crosses aren’t something that they found and thought of me…they are hand made, with love – every single one of them. We enjoyed a meal together recently and at the end of it, they surprised us with an incredibly kind and generous gift. 

They wanted to help us through this journey and help with donations for all that lies ahead. So…they made us crosses to share with you. Each one is quite literally made with love by my friends, Toni & Mark. They even picked out some of my favorite verses and sayings and printed up cards to send with each cross. And if that isn’t absolutely amazing enough! They asked me to say a little something over each cross – like the favorite verse – before they mail it out. 

Looking past their unbelievable generosity, the process of making each cross simply amazes me.

First, they take a box of masonary nails. They secure them into a vice and heat them up with a torch to bend them. Next, they pair each bended nail together to make a cross.

Once paired, they use gold to weld the nails together – creating a bond between the nails and the gold that is unbreakable. Isn’t the afterglow of the brazing amazing?!  I love that these are brought to the fire in one form and made stronger at the end – with a new purpose. Just like the phoenix.

Next, a hole is drilled in the cross and a jump ring is placed for it to be hung.

Now it’s ready to be wrapped with wire around the gold and leather is used to hang the cross. The end product? 

Meghan’s Cross

When Toni & Mark shared with me that they wanted to make these amazing crosses to be sold for donations, I was immediately brought to tears. But then I saw Joe’s reaction and my heart swelled even more.

“I can’t wait for one!” He exclaimed excitedly. I smiled, “but you don’t wear necklaces?” I asked. He looked at me, eyes wide and animated, “but I can hang it from my desk or rear view mirror and always have Meghan’s Cross nearby.” ❤

If you are interested in one of these gorgeous crosses, head over to the Give page or you can mail a check. The crosses are only $15 each! That includes shipping and a few words of love said by Meghan (me!😉) over each one before it’s sent on its way. 💚

If you are local and would love one, let me know and we can arrange a pickup!

I am incredibly excited about these wonderful creations and I cannot wait to share my love for these crosses with you!

Spread the love, my friends!!

Pain, pain, go away!

It’s a rainy day here in Central Florida…one that worked well with my impromptu nap this afternoon! It’s crazy to think that the week is already half over. I spent almost all weekend and a lot of this week “relaxing”. This really means that I’ve been too tired or uncomfortable to do anything. Thankfully my husband and little guy have been wonderful with taking care of me and ensuring my comfort.

I’ve consistently been draining a lot of fluid from my lung, which is drained every Monday, Wednesday and Friday. Last week ended at 850 ml, which was the amount drained again on Monday, and then 600 ml today. I owe a phone call to the doctor because Monday and today’s drainings hurt enough that I asked them to slow down and stop. I’m not sure if it’s close to the end and that’s why it hurts or if the tube is in a weird spot. It’s worth the ask, either way. The fluid causes discomfort and pain in my chest because it fills so quickly and in general, my back has been hurting a bit. I imagine this is also caused by the fluid but who knows.

My appetite is not awesome and I’m losing weight rather quickly because of it. This may be because of the mixing of chemo pills, Afinitor and Xeloda, so we will see how I feel during my week off, starting tomorrow. During my first trimester of pregnancy with Jacob, I had major food aversions. Everything seemed to upset my stomach and I basically lived off of cereal (this actually remained true throughout the rest of my pregnancy). Just the smell of foods would make my stomach turn. Even the times that I would crave something like crazy, I would eat it and immediately it would become unbearably unappetizing to me. This is reigning true now, only times about 10. Thank goodness for smoothies.

I’ve been able to get things done off of my to-do list, which helps me to feel accomplished, though my list is taking significantly longer to accomplish than it once did. I’m tired relatively quickly and often need to lay down after crossing a few things off. I’m grateful to be able to accomplish as much as I can, despite not feeling wonderful. 

It’s frustrating. The pain, the discomfort, the utter exhaustion and the overall feeling of not being well…it sucks. Throughout most of the last year and a half, I have been able to push through the times that I’ve felt bad, knowing that I would eventually feel good again. I’m struggling with that right now. The times that I feel bad are becoming more frequent than the times that I feel good.  And that hurts. I don’t like that. Despite putting on a smile and going out to do something, I am finding it harder and harder to force aside the feeling of discomfort. It’s frustrating because I want nothing more than a sense of normalcy, for my family to feel comfortable going out with me and enjoying our time together, rather than worrying if I am doing ok. I know they will worry either way, it’s just hard to come to terms with the fact that my new normal changes by the day. 

Tonight Jacob asked me if he could bring me to the doctor to feel better. While his innocence warms my heart, it stings for him to know that I’m not feeling well. I told him that I went to the doctor and have medicine to help me get better. He squealed in excitement at that and hugged me big.  He exclaimed, “Yay!! You get better! Did you see Dr T?” I laughed at his reference to his pediatrician (it amazes me what he remembers!) and held back tears, knowing that I will never get better despite his excitement.

I don’t share this for pity or to cause concern. I am not giving up and I know how very blessed that I am – if the last week has shown me nothing else, it’s that I am truly blessed. I share this because it is the reality of how I feel in this moment. Cancer sucks. It’s not all pink and frilly, sprinkled with rainbows & butterflies with a dash of survivorship. It’s constant pain, a forced smile and a lack of appetite. It’s a hope for a good day, the need to not have to nap, and to sleep through the night without waking up in pain.

It’s not letting my family see the struggle or witness the constant discomfort. It’s being afraid to make plans for the future, out of fear of how I will feel. It’s wondering if I will truly feel worse than I do during my worst moments now.

But, I will push all of those thoughts and feelings of discomfort aside. I will hug my boys and snuggle them to sleep. I will watch them breath deeply with sleep, knowing that for now I am blessed to wake up by their side and embrace another day with them. That, in itself, is one of the biggest blessings of all.

💚

God Winks…

I have been a believer in God Winks for many years. I remember when I was around 18 or 19 & I read a teeny-tiny book about God Winks. It explained them in plain terms for me & provided examples that I could relate to in my own life. Some examples were simple, perhaps opening a book – particularly the Bible – to the exact passage that you needed to hear in that moment. Or something bigger like an unexpected visit or gift that answered your unspoken question. Sometimes they were shown as a way to remind me or show me that I made the right choice.

Once you change your way of thinking to start seeing these winks sent by God, they seem to be more noticeable. They were likely always there but it was a matter of changing your thought process to ensure that you can pick them out. It’s not something that is necessarily seen in the moment, although that certainly happens, but often times it’s thinking back over the last week or month and realizing just how many – and how BIG – God Winks surrounded you.

I’ve been thinking back over the weeks of this year. I was struggling with making a particular decision and over-thinking it, as I often do. Without realizing it at the time, every question or hesitation that I had was answered or removed as a non-issue. Before it was even time to make a decision, the decision was made for me because the God Winks laid out the answer for me by eliminating every possible burden or roadblock. There wasn’t a choice to make because the path was laid out before me.

This week has been filled with blessings. Many I have written about and others that I haven’t, but this entire week was filled with tears of pure happiness and joy. I can’t fathom what I have ever done to deserve the incredible blessings that my family and I have received. 

I won’t pretend this week was easy, because it wasn’t. I had my fair share of frustrations, I have been in continuous discomfort, my tumor markers are rising, my fluid output isn’t getting lower (850 ml on Friday) and my energy levels are the lowest that I’ve ever seen them. I have a lot of decisions to make, a long list of to-dos and I can’t seem to catch up on life, despite making more room for me to handle life.

But…I think back to the blessings of this week and I smile. They overshadow any of the down moments that I have had. They make me smile and make my heart feel full. These God Winks remind me that I am on the right path in life. No, it’s not perfect and yes, I have a lot of things to do (I am stalking UPS and anxiously awaiting the arrival of my new planner that I hope will help me to organize my life!).

But I must be doing something right. If these God Winks – these amazing blessings – show me nothing else, they show me that I am headed down the right path in life…the path that I am meant to be on.

💚

Today…I slept.

Since being diagnosed with cancer, especially Stage 4, I am not a big believer in “wasted” days. You know the ones that I’m talking about…the days where you stay in your pj’s just about all day or that you get dressed but never leave the house or that you even spend simply binging on some TV shows. There was once a time where I felt as though I had to go-go-go in order for the day to feel particularly memorable or significant, I suppose. After Jacob was born, any day spent snuggling with him was considered amazing and yet I still felt the urge to be doing something or to have plans most days. 

I have an ongoing list of things that I need to do. While they aren’t “urgent”, they are things that loom over my head. They don’t require a significant amount of effort, since most of them are phone calls or follow ups, but they are things that need to be done. My home health nurse visited again today (Monday, Wednesday, Friday for a few short weeks), and I figured I’d tackle my list after that.

Today though, I slept. I didn’t mean to, it just happened. I have been battling with sleep since before surgery and the last two nights I have gotten close to 7 hours, which is exciting. The nurse came and removed another 750 ml of fluid (what?! Friday was only 260 ml. I don’t know how it increased, but I wonder if it has to do with my position during draining.)

I felt particularly tired after the nurse left and laid down, setting my alarm for 45 minutes later. I figured that I’d have a quick nap to regain my focus and then tackle my list. The day had different plans.

I woke up hours later…literally. I couldn’t believe it! I must have turned my alarm off while sleeping and continued to snuggle under the covers. 

When I finally woke up, I felt quite guilty. My list is still untouched – well, that’s a lie; I just added 3 more calls to it – my coffee is sitting cold in its mug and I haven’t even unloaded the dishwasher from last night. I feel guilt trying to sneak in and make itself comfortable, but I won’t let it. I was tired and my body needed the extra rest. I feel as though I have pushed myself many times over the last year & a half and I don’t want to do that anymore. Whether I meant to or not, I gave my body the rest that it craved.

So, that’s my day. I do not consider it wasted but rather needed. A day that my body and mind was urging for…to rest. 

Yes, my wedding dress is in pieces.

When Joe & I interviewed photographers for our wedding, there was a key task that I wanted to ensure was included in our plan.

A Trash the Dress session.

It would be scheduled for the day after our wedding and the main purpose was the do just that – trash my wedding dress. The photographer that we chose lit up when we asked him about doing the session. He was so excited that he included the session for free. 

Many people have their dresses preserved, or want to pass it along to their family or have other plans. For me, the wedding dress and Joe’s outfit were important and certainly key to our big day but I didn’t have plans for them after that. I absolutely loved my dress- it was perfect. And the fact that I originally fell in love with it in a size 16 and bought it in a 6…well that moment of pride adds to how much that dress means to me. The session itself was incredible and some of my absolute favorite wedding pictures came from that. Even my bridesmaids got involved!

But at the end of the day, it had no purpose. I didn’t even wash it after that day (figured I’d just ruin it) and it had hung in my closet covered by the bag that it came in for the last 6+ years. I’ve toyed with doing different things with it over the years but never actually made any plans for it. Until now.

When I heard that my friend Audrey loves to sew – and is amazing at it – I knew that handing over our wedding outfits to her was exactly what needed to be done. I asked her about it, telling her that I had done some searching but hadn’t found anything that I fell in love with yet (wait…another Pinterest solution fail?!). I suggested maybe a blanket to pass along to Jacob but that I had no vision in mind and she agreed, getting excited about the possibilities. 

I handed her a bag filled with my dress and Joe’s attire folded nicely inside of it. We were standing outside of a restaurant where we had just enjoyed lunch and she looked at me. “Are you sure you want to do this?” I smiled, “Absolutely!”  I continue to get more and more excited about the blanket just thinking about the possibilities!!  Audrey even asked me what our first dance song was, so she could listen to our song while she began working on it.

I have no plan or thoughts for this blanket, I simply know that it is in the right hands.

She wrote a bit about the experience here:  Sew Sew by Audrey Perrott

My jam! …and my reasons.

Today, church talked about all pain having purpose. Whether or not we see it or feel it or even understand it – the purpose is there. Whether the pain is physical or emotional pain, the purpose is there. There have been a lot of things happening recently that have given me pause and caused me to stop making excuses and instead make changes in my life. Any obstacle or excuse that I have found has been, quite literally, alleviated before I even had a chance to concern myself with it. I cannot help but see that God has a plan and a purpose, even if He isn’t showing it to me yet.

I’ve mentioned previously that scanziety is very real. Whether you feel great or crappy, there is always a fear when scans approach. Even as recently as December, my doctor was 80% sure my scans looked stable and then – POOF! – cancerous fluid is present, and I didn’t have any symptoms. I’ve been through quite a few scans over the last year & a half – some have been great and others, well, not so much. One thing that I’ve learned is that I cannot change the outcome of the scans. I can only change my perspective of them.

So as tomorrow’s scans quickly approach, I decided that it’s better if I share how I feel physically. I think this will help me to better prepare myself for any news that may or may not come. It is not helpful to worry unnecessarily or spend time fretting about what may or not be. I need facts, conversations with medical professionals and to remain calm. That being said, scans are always something that I try to turn a blind eye to because I don’t want to spend too much time or energy thinking about them beforehand.

I pulled up my tumor markers yesterday, from Wednesday’s blood work, and saw that they were elevated. You may recall that they dropped back on January 5th – which had me jumping for joy. Unfortunately, they are back up again…and higher than they were in December when I stopped Xeloda. My CEA is 16.3 and my Cancer AG 15-3 is 26.7. Yuck.

When I saw my oncologist back in the beginning of January, he had shared that even if my end of January scans showed progression (depending on how much), that he may not change my treatment yet because typically new treatments take 10 – 12 weeks to be in full effect. I don’t know whether or not the fact that my tumor markers were initially lower will factor into that. I imagine that my scans will play a significant role in that decision as well.

I will say that my lungs were full of cancerous fluid when I had my blood drawn – over 1700 ml of it…enough to warrant a procedure to implant a permanent catheter. I don’t know if this matters in terms of tumor markers or not. Perhaps Afinitor doesn’t have the opportunity to work fully on my cancer because it can’t keep up with the fluid build-up in my lungs. Who knows – I don’t even know if that makes sense medically. 😉

Some parts of my skin look significantly better, such as two of the areas above and below my radiation burn that have been quite painful since September. Both areas appear to be healing, which they haven’t done much of in the past 5 months. My skin lesions, on the other hand, aren’t looking as good. They don’t look a whole lot worse, mostly just redder and perhaps one is big enough for a trial now (it may be slightly too small still), but also there seem to be just a couple more than there were a few weeks ago. There weren’t any new ones popping up initially – which was fantastic. That may have changed.

The lymph node on the right of my neck that was previously swollen – and then disappeared – seems to be venturing back into my life. My jaw also suddenly hurts when I yawn, so I’m not sure whether or not that is from Xgeva or a cancerous node.

So that’s where I’m at. Oh, and I’m tired. My platelets have suddenly risen (another concern of mine that Afinitor may have stopped working) so I can’t blame them for my fatigue. It is on my list of questions for the Nurse Practitioner tomorrow though. It doesn’t seem to be getting better, despite my numbers changing.

I’ll admit that when I first saw my tumor markers yesterday, I was a bit distraught. It was the one thing that I was holding onto that would tell me all of these other things could be explained away. Seeing that they had jumped, and higher than December, hurt. A lot. Frankly, I was angry. I can’t catch a break with treatment! My cancer is just too dang smart – it keeps mutating to beat out any chance of it dying off! Why do I keep trying when cancer just continues to win?!

Yes, I was yelling – mostly at the Universe. At that moment, a new song came on the radio and Jacob yelled “This my jam!” and put both hands up the air to dance along while singing to the music. I took a deep breath and smiled.

This is why. Right here. Jacob, Joe…my family, my friends. This is why I continue to fight. This is why I don’t let progression or tumor markers deter me. This is why I will unearth every possibility for treatment that I possibly can in order to live out every single moment of life that I am able to. These boys, these are my reasons.

I may not know what God has in store and I may not know what the future will bring but what I do know is that I am meant to be here now, in this moment. I will not waste my time worrying or being angry about this cancer. I won’t waste my time concerning myself with things that I cannot control. Instead, I will stop, change course and redirect. Because that is the only way to move forward.