She sipped her coffee slowly, aware that it is a luxury she does not indulge in very often now. The air was cool, which was a pleasant change from the overwhelming heat a week ago. A light breeze blew in through the open windows. She had lit just about every candle that she could find in the house. Despite the competing scents, there was just something about the cool air and windows open that required candles to be lit.
Staring out the window, she couldn’t help but reflect on this very moment. Multiple notebooks were in front of her and she had set out to make a list of the things that needed to be done. There’s the cancer list that includes records she hasn’t obtained, phone calls she hasn’t made and people she needs to follow up with. There’s the list of everyday tasks, including groceries and air filter changes. There’s a list of things that need to be decluttered in preparation for a potential home sale. There’s a list of items that might sell and a list for items to donate.
Then there’s a list of occasions that she wants to write to her son, in case she isn’t here to tell him how proud she is. There’s a list of things that she cares for in the home that she will need to share with her husband, so that he knows the passwords, the days that she pays certain bills and the regular appointments that need scheduling. There’s a list of things that she wants to accomplish before she doesn’t feel up to doing them anymore.
But in this moment, right now, the lists don’t matter. All is quiet. No one is home and a light breeze is coming through the open windows. As she sips her coffee and stares at the notebooks, she clicks her pen over and over again. The smell of cinnamon and pine fills her nose as the candle flickering in front of her steals her attention. She watches the light from the flame as it dances about, unaware of the woman mesmerized by it. The puddle of wax under the flame was clear, a stark contrast to the orange-red flame just above it. It moved about despite the silence, dancing to its own beat.
So that’s what she did. Leaving behind her notebooks and lists and pens, she walked away from them all to sit in front of the open window and watch the world. Even if just for a moment, all was calm around her as she stared out the window. The wind blew the trees with astonishing strength, the cat prowled across the grass chasing the lizards that hid amongst the blades and the cars seemed to move in slow motion as they passed her house without a second glance.
She leaned back in her chair and breathed in deeply to smell the sweet, fall aroma of the candles and the cool air. For just this moment, all was tranquil, still…peaceful.
When I was pregnant, I traveled to NY for my NY baby shower and it happened to be my birthday weekend. My sisters gifted me money for a new hair straightener that I had been eyeing. I was super excited and purchased it immediately (gotta love 2 day shipping on amazon!). It worked amazing and I used it constantly.
After I shaved my head last year, I offered it to my sisters since I had no use of it for a while. They all responded with a “No way! You’ll need it soon enough!” It’s been sitting patiently in a drawer awaiting the day my hair would be long enough.
Today, I braved the straightener. My hair went a little crazy in the process (rightfully, it wasn’t really sure what was happening) and I thought for sure a headband would be needed with all its craziness. To my surprise it all calmed down and although short, it’s settled in nicely! I’m excited for a bit more versatility in my hair styles now. I don’t know how long it’ll last (eventually IV chemo will be needed) but I’m totally enjoying it in the meantime.
My feet are sore today after all the walking this weekend (totally worth it!). I think the sand at the beach dried them out a bit and made them a little more sore too. I’m rocking my Sanuk’s today though so the extra cushion helps. I’ve always purchased my Sanuk’s at Ross, the discount store. Thanks to an incredibly generous gift card, I’ll be purchasing my very first pair of Sanuk’s on their website today. I am SO excited for that!!! ❤
It’s the little (big) things in life, friends. The moments like these that make me smile, well they make the day a little easier. Happy Monday! I am definitely too blessed to complain.💚
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!
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.
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.
It’s an AWESOME day, my friends. We continue to pray, hope and love!
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!
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!!!
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!
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. 🙂