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!
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!
We are on our way downtown for the Gamma Knife Radiation today! Although I know it isn’t a simple procedure, I am anxious to get it underway and move on knowing my brain is treated and clear! Here’s to great results and lots of progress today, friends!
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! 💚
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.🙂
Hard believe it’s been a year since we started our Go Green Saturdays thanks to my sweet aunt! I love them!! #teamredphoenix
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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.