Fall fun…

When I was little, my mom always bought window clings for the holidays. Easter, St Patty’s Day, Christmas, you name it. If they made window clings, she bought them for us! I always looked forward to climbing up on the couch and decorating our big front window with them. I would come home from school and rearrange them just because. It never got old for me.

When we bought our home years ago, one of the things I was excited about was the bay window out front. I’ve always decorated it with window clings. Though I’ve missed a few holidays, I always look forward to putting them up on the window. I especially love when I find them on clearance and can stock up for the following year!

Jacob has watched me put up the clings each year but hasn’t shown a lot of interest. For some reason though, I knew this fall would be different. I forgot about the clings during our travel and when I decided to (finally) start decorating for fall today, I wanted Jacob to enjoy it. I remembered the clings and sat down by the front window with him. He was instantly hooked! He put up each one by one, making sure to describe them to me. He put some “up high!” and some “over here!” and I can’t help but smile at all the fun he is having.

The clings are “falling down” (aka he pulls them off and has to put them somewhere else) and he is loving the rearranging. He hasn’t left the window for at least half an hour and keeps showing me the different clings that he is putting up. He is moving them all around and playing with a random lizard (come here lizard!) that stumbled across the outside of our window.

At every age I say it’s the best. But something about this age and his sweet discoveries leaves me so speechless. He loves to learn, enjoys these traditions and will try mostly anything. I am blessed with such a wonderful little man!

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Live stream – recorded

I have a LOT to say about yesterday  (and the last week) but for now I will leave you with the live stream recorded during my photo shoot with Hidden Warriors yesterday. I don’t pretend to have any rhythm and I picked the music but my goodness…what an incredible experience. Talk about EMPOWERING!

I hope you enjoy!

http://www.ustream.tv/recorded/91657401

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! 💚

A Tuesday update…and gratitude

I can’t help but laugh at the fact that I caught my first post-chemo cold this time last year. I have yet again caught a cold. Jacob had it early last week, then Joe so it was only a matter of time before it made its way to me. The congestion is not awesome but thankfully I don’t have a fever so it just needs to run its course. I am also grateful that it is my off week so my body can fight a little harder this week to battle this virus!

Today was a busy day. I had radiation and met with the doctor afterwards as I normally do on Tuesdays. My skin is quite pink and peeling everywhere but my armpit is the most painful. Just about every time I move my arm, I am reminded of the radiated area. You don’t realize how much you move during your sleep! It wakes me up a lot but at least I fall back asleep. J The radiation oncologist says my skin looks great compared to when I first started – so wonderful to hear that! My skin nodules (breast cancer) are completely gone with the exception of the one that I had biopsied. I assume it’s scar tissue around the biopsy site since I can literally see where the stitches were. She wants to see me again on Friday to determine how I’m doing and if I should take a few days off after the 20 before doing the 5 boost treatments. She wants to focus on where the breast cancer on my skin was and my lymph nodes. It’s hard to feel the lymph node in my armpit right now but I would guess it is at least a sixth of the size that it was…barely even there! The lymph node in my neck can’t even be felt anymore. Such great progress. I keep reminding myself that a few weeks of pain and discomfort from this radiation is worth it to make this cancer disappear from those areas. And we are almost done – day 15 was today!

I met with my oncologist afterwards and we had a nice long chat with my million or so questions. J It was a nice conversation and I was greeted with a big hug. My feet feel significantly better today, despite the blister that formed from hand & foot syndrome over the weekend. The oncologist said that since it started at the end of chemo that is a sign that it was time for the week break for sure. We will see how the next round goes and then reassess whether or not to lower the dosage. I am hesitant to do that only because it appears to be working. At the same time, why do I want to subject my body to a higher dose if I don’t need to? Oh, the things to consider… I’ve been having lower back pain since about the time that my feet started hurting. This is obviously concerning because I have cancer in my pelvic bones. It is significantly better today and yesterday though. I spoke with my oncologist about it and he said it was likely a result of my white blood cell count causing bone pain in that particular area. That was a previous chemo reaction too, yikes. It was pretty painful so I am curious if I have it with this next dose as well.

My blood work also looks good, considering it is my off week. While my white / red blood cells, platelets and hemoglobin are technically low, it’s good news that they are higher this week. I certainly don’t want to take any more time off than I need.

So today, my prayers are of gratitude. I am grateful that this chemo appears to be working. I am grateful that despite the side effects of radiation, everything seems to be responding to it. I am grateful for a team of doctors that I truly appreciate and that they whole-heartedly support (and encourage!) every second opinion that I receive. I am grateful for today because despite this cold, I am here and able to snuggle my dear husband and little man.

I am also grateful for the gift of time…in so many ways. Stay well, friends – and spread that love!

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!!!

Some days are hard

I started this blog with the intent of being honest and truthful – and that is what today’s post is about. I’m tired today. Bone tired. Head tired. Body tired. Mind tired. I am just all around tired. I started my second dose of chemo pills last Friday and felt fine with the radiation combination. Saturday I was a little tired but nothing crazy. Sunday I was exhausted despite a nap with little man in the afternoon. I fell asleep quickly last night but woke up at 1245am and couldn’t sleep. I think it’s time to adjust my melatonin dose, as I have been taking the lowest dose so far. It’s not so much cancer that keeps me up as the inability to shut off my head. Apparently I want to solve all of life’s – and the world’s – problems in the middle of the night. 🙂 With an 8am radiation appointment that’s 45 minutes away, you can imagine just how tired I am.

I know my body needs sleep. I know it needs to heal and I know it has a lot happening right now. I was expecting more of a gradual push towards the fatigue than a full on attack of it. But that’s ok. Know why? I have an incredible support system that ensures I rest. My sweet husband is on his way home now with little man to cook dinner while I rest and head to bed early. Tomorrow my in-laws will watch little man after daycare so that Joe & I can travel to my Gamma Knife radiation appointment bright and early Wednesday morning (leaving at 430am!). How incredibly blessed that I am is not lost on me. And who knows, maybe the twilight medicine they give me Wednesday will knock me out for most of the procedure?! One can hope, right?

Anyway, that’s all for now. A short post with a small update about how tired I am…and I’m off to rest. 🙂

Tonight’s thoughts

I can’t get the day out of my head. My trip to Moffitt was incredibly informative and I learned so much. I know that I have a journey of unknown ahead of me but the things that I was taught today are progress for sure. 

As I lay here, the day is not lost on me. We are praying for bold miracles and we are praying hard. These doctors and nurses that are pouring over my records, the pathologists that are looking through my scans, the planes and the cars that are getting me around, the family & friends that continue to support me…each one receives prayers every single day. And those prayers are bold and they are brave and they are asking our God for a miracle that I know is possible. Yes, I have a lifelong disease but dang it, that disease will not take over. I will learn to live with it and I will continue on this glorious journey of life. I feel the love wrapping itself around me every single day. How can I not have faith in that? 

So tonight as I lay here taking in the day before and the day ahead, I am thankful. I am thankful for the continued support that we receive from everyone and for the outpouring of love from near & far. We are so ridiculously blessed & loved. I cannot possibly be more thankful. 

💚💚💚