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 still here! 

Here I am! Life is keeping me busy as always. We spent this weekend checking out different beach houses and dreaming of waking up to the sound of the ocean. At one point, we drove up to the beach and Jacob’s excitement was adorable! “Beach! Beach! I go beach! Water at beach!” Needless to say, Jacob is a bit of a beach bum – and I would not have it any other way! 😎💚🌊

Visiting the beach, my happy place, made me start thinking about where life takes us. I grew up visiting the beach in Connecticut & Rhode Island since my Dad’s family lived there. When I moved to Florida, I visited the beach often. I took a few years off from it (crazy to think, right?!) but the beach was calling my name all along. I learned that although I enjoy the summers at the beach on occasion, my true joy is winter here. There is nothing quite like walking the beach with a long sleeve shirt and searching for sand dollars. I could spend the day living life just like that. 

So why did I wait to explore this option? Well, I think I’ve realized now that it’s time to make all options a reality. Because…well, why not? Now is as good a time as any. I know that my timing is not actually mine but His. And that although I may not realize it always, His timing is perfect.

So today I ask you, what are you waiting for? What dreams do you have that need (yes, need!) to be a reality? What are you holding onto that is a life goal and yet you can accomplish it now? 

For me, it’s the beach. It’s waking up and feeling the salt air on my face. It’s leaving work and walking the shore. It’s sunsets and sunrises that never get old. It’s seashells and sand dollars everywhere. It’s relaxation. It’s my happy place.

“Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms.” 1 Peter 4:10

It’s Friday! 

Yesterday was a tough day. I was tired, fighting a headache all day and radiation was moved around because of the machine being down. Jacob had an allergic reaction to cereal and we had to take him to the doctor. Thankfully, he is completely fine! It was a tiring day but I am so grateful everything worked out ok.

A year ago yesterday I had my port put in. A year ago tomorrow I started my very first chemo session. Fear of the unknown has been a regular for me now and although uncomfortable, I am growing accustomed to it. I took 3 days off from xeloda for the Gamma Knife and started back again this morning. It’s interesting how you grow anxious about taking the pills. They are strong and working hard on my body to fight this disease and yet I worry when I take days off. I am glad to begin again today.

I decided to take the medicine prescribed to me to help me sleep last night. Although tired today, I slept most of the night uninterrupted and I am so grateful for that. I needed sleep! 

I am still fighting the headaches from Gamma Knife today but overall, I am a bit swollen and that’s all. I feel better than I expected and I’m glad for that. My skin is turning a nice shade of red from the chest radiation so I know the skin reactions will come but I am lotioning up in the meantime! In all of the chaos this week, I forgot to mention that when I met with my chest radiation oncologist Tuesday, she remarked about how great everything looks! Though she is mostly crediting the xeloda, my chest and lymph nodes are significantly smaller and looking great. Such wonderful news to hear!! I am currently slated for 20 days radiation but depending on my reaction, she may keep me an additional 5 days to hit my lymph nodes harder to keep the cancer away from there. We will play that by ear and see how it goes.

So today friends, is a good day. Each day may not go as we plan and things will continue to pop up and surprise us. What we can do is embrace the changes and remember that God has a plan…whether we know it or not. Be well, friends!

My GREAT day!

Of course I have pictures to share, if you’re interested in seeing the head contraption! 😉

Today has been great! Joe & I ventured to the hospital downtown and the process itself was amazing. I had 2 nurses assisting and one other patient, so the nurses were incredible. I filled out some paperwork and the nurse explained the process again and I headed back. Joe stayed out of the room until the last hour for discharge.

They accessed my port, which took a minute but thankfully they were able to because it’s easier and my veins are scarring a bit. The neurosurgeon came in, explained the procedure again and I was given versed, the twilight medicine. Thankfully, this was done through my port so it was pretty quick to act. I was sitting straight up and the nurses & neurosurgeon used lidocaine injections on the 4 different spots that they secured the headpiece to (2 in front, 2 in back). It felt like bee stings. Then they secured the headpiece in place. They screwed it into my head, versus my skull which I was curious about. There was a little pain from one of the sites but overall it was not bad! I am grateful for the versed and the lidocaine to numb me up beforehand. The process was super easy and not anywhere near as painful as I expected. The headpiece was made of lead so a bit heavy but nothing crazy.

Next, I was wheeled down for a CT scan and had a square piece secured to my head for them to measure against. I did a CT with and without contrast and the 100s (literally!) of scans were sent immediately to a physicist to confirm they were sufficient for my treatment plan. Confirmed within about 10 minutes, I was wheeled up near the Gamma Knife room where I waited for the neurosurgeon and radiation oncologist to put together my plan. During this time, the nurse used a roundish piece to measure my skull in the headpiece. The neurosurgeon popped in within about 30 minutes and confirmed everything looked GREAT! There is no cancer in my brain – I cried. This is SO exciting!

Next I was wheeled across the hall to the Gamma Knife room. The table is quite similar to a CT scan and I was fixed in place laying down with another piece of lead. My head was heavy but I was secured in place. I could eventually feel a little of the pressure from my head resting in place but nothing unbearable. The door to the machine opened and I slid inside until about my abdomen. The entire radiation was only 30 minutes (yay!) and was completely silent. I could only hear the machine moving every once in a while. Oh, and Pandora which they tuned to a Rascal Flatts station for me! I was strapped in lightly so I remembered not to move my arms and given lots of blankets to keep warm. The time went pretty quick, especially listening to music!

Once done, I sat up and the radiation oncologist came in to remove my headpiece. I could feel the pressure but it wasn’t bad at all. I was wheeled back to await discharge and Joe was invited in to see me.

I can’t say enough wonderful things about the nurses and doctors who stayed by my side all day. They made the process amazing and I am so grateful to have them in my corner!!!

I am tired now and my head hurts pretty good but I’m hoping the Tylenol will help with that. Today was a great day and I am so happy about my CT scan! Time to rest and thank God for the goodness in my life, friends. Stay well!

The Gamma Knife Rad

I slept almost 8 hours last night! Yes, interupted but I feel better already. 😊

Thinking about the fact that one month ago today, I was headed to brain surgery is crazy to me. Fear of the unknown, my recent cancer re-diagnosis and the possibility of defects was overwhelming. My trust and faith did not waiver despite all that seemed lined against me. Your continued prayers have been priceless in getting me through these times.

Tomorrow, I venture into the unknown world of the Gamma Knife Radiation. It is targeted radiation therapy to the section of my brain that had surgery versus whole brain radiation. Joe & I will arrive for check-in at 530 am for a 6am setup. I’ll receive IV fluids (though I will likely use my port because I learned last Friday at genetics testing that my veins are starting to scar over) and twilight medicine (versad) to help relax me. I’ll have a CT done (normally an MRI but I have tissue expanders and cannot have that done) to confirm the area that they are treating. The neurosurgeon that did my brain surgery and the radiation oncologist that I met earlier this month (not the same as my chest radiation oncologist, though partners) will partner on my plan. Once my plan is confirmed and in place, they will let me know the length of the procedure. Typically, it is about 45 minutes but can take up to 4 hours depending on what they find and treat. I am anxious for the CT scan to confirm there is NO active cancer in my brain!

I’ll have a “head piece” secured to my head with 4 different screws, 2 in my forehead and 2 in the back of my head. They will use lidocaine to numb the 4 areas and I understand each will hurt like a bad bee sting. The head piece itself is not going to feel awesome going in but I know it’s worth the process. I suppose my Halloween costume of Frankenstein has been picked out? 😉

Once I’m secured and my plan is in place, they will treat me. I understand that I will be sitting up because of the area but I imagine that depends on the treatment area. After treatment, I’ll be moved to the discharge area, where Joe will finally be able to see me (he has to hang tight up until then!). I’ll be given some food and water at that point (should be interesting on a raw diet!).

The process should take most of the day and I imagine that I’ll be ready to sleep afterwards. The side effects are mostly headache for a few days, possible nausea and the loss of hair around the treatment area. The benefits of the radiation will last significantly.

So tomorrow is a big day! I’ll take the day off from my chest radiation tomorrow to rest and be back to it Thursday. Never a dull moment for this chick! 😉 Have a happy Tuesday, everyone! 💚

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. 🙂