“My ‘noculars!”

I can’t stop looking at these pictures from school today – and I love my big hug before he headed there!

Jacob received his “noculars” as a Christmas gift from Grandma & Grandpa. They were a thoughtful gift to help Jacob find fish when out fishing. He absolutely loves them and hasn’t really put them down since Christmas. He likes to take them everywhere and will often bring them in the car and tell us what he sees through them, including mommy and daddy.

For the last week, Jacob has been asking to take them to school. Typically when he does this with a toy or book, we can talk him out of it because he doesn’t want to lose them at school. And we promise to bring them with us when we pick him up. With the binoculars though, he wouldn’t take no for an answer. He was so adamant that we asked the teachers if it was OK that he kept them with him. They happily agreed (oh gosh, I sure hope he is sharing!) and I don’t think he’s missed a single day of bringing them with him since.

He accidentally left them at school last night and was a bit distraught over not having them. When we explained that he would find them at daycare when he went, he was anxious to hop in the car and get there. I imagine he found them soon after arrival and didn’t take them off much afterwards. 

His school uploaded the pictures of him drawing on paper and then checking it out with his binoculars. I love it so much! They are helping him to embrace the use of his favorite toy and learn more about how he can use it. I love that he has such a wonderful imagination to go along with these binoculars and that his school helps him to foster that. I love that he loves a toy that has practical uses. I love that he enjoys his binoculars so much. I love everything about these pictures. 

I love that I see these pictures and it makes me take a step back in my own life. It’s easy to get caught in the thick of things and lost in the weeds. It’s hard to pull yourself out and find yourself & your purpose again. Feeling as badly as I have recently, I have been losing myself in those very weeds, focusing solely on the pain and discomfort. 

But there’s so much more to it. There’s all last week, which I am still not over emotionally. There is all of the incredible upcoming events and visits that are planned. There are the little things (that are actually quite big in the long run), that I want to incorporate into my everyday routine and have no excuse for why I keep pushing them out. There’s my purpose, my desire, that I want to focus on now, not later.

No, I can’t stop the way that I feel physically, but I can take a look through a different lens and see the things that I want to focus on. Things that I’ve been excited about but pushed aside because of the way that I have felt recently. 

It took Jacob and his noculars to remind me that I am in control of the lens that I use to see life through. It’s time to start using the one that helps me focus on what’s truly important. It’s time to switch my lens.

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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. 

Dana Farber Visit

Yesterday was a long day of travel but I am so glad for the trip! My sister met us at the airport, brought us to Dana Farber and took little man with her to hang out with the rest of my family who met us here. My cousin works in the pathology section at DF so she met us for the appointment and helped ask questions along the way. It was awesome! 

We learned a lot yesterday. The doctor was very thorough in my history and my exam. One thing that she recommended was to do a panel on my recent biopsy to look at it further and determine what potential mutations may be occurring within my cancer. This process takes up to 3 months for review so we started that. I thought that was super interesting and I am curious of the results, especially knowing that my cancer grows quickly. Combined with the generic testing from Moffitt and I think we are covering our bases. 

She went over a lot of treatment options that are potentially available to me, including standard chemo and clinical trials in the area. Until we know for sure if the Xeloda is working – and we are optimistic – she agrees with the current approach. We know that any treatment will eventually stop working (kind of like the overuse of antibiotics, they become obsolete) so I am glad to hear that we have other ways to fight this disease. My cancer is responding to radiation according to my previously radiated skin and lymph nodes (no active cancer there now), so she is hopeful that I will also respond to radiation this time on my right. 

Moffitt mentioned yesterday and DF said again today that we anticipate my brain tumor to come back elsewhere up there at some point over time but meanwhile we are doing the pathology on it to ensure we are targeting it correctly. We are also doing the radiation on it this month to keep the cancer away from that area. There will come a point when I will likely need whole brain radiation but that will depend on where lessons pop up. So we are praying for none! 

The visit was great and the doctor was wonderful. There is a lot to consider and I think that the different options available to me in each area is worth the trip all in itself. Building these relationships and ensuring we talk through every detail is so important! 

That’s all for now. Off to enjoy this gorgeous Boston day! 💋💚

Moffitt visit!

Wow. What a trip! Joe & I learned so much and are processing everything today – which is A LOT.

I will have additional genetic testing / panel done for genes that I have not yet been tested for.

I do qualify for clinical trials that are available at Moffitt for my cancer, however they have not yet started. This is good news because I am still taking the Xeloda in the meantime, which we are hopeful about!

I will chat with the radiation oncologist tomorrow but it is recommended by the doctor today to receive radiation to my lymph nodes and the skin on my chest to remove the cancer cells.

The doctor today was awesome. She was funny, wonderful and top of my records. She agrees with my wholistic approach to fueling my body and making it stronger to fight this disease. Her closing comments to me were that I will continue to receive chemo for the rest of my life, but she is there to ensure that I have an excellent quality of life and learn to live with this disease.

It was a great day and I am anxious to meet with Dana Farber tomorrow. I know decisions need to be made but we have time for that. Pursuing all of our options and visiting these centers to make our decision is so incredibly important to me. Thank you for your continued support as we visit these places!

Things just got real!

As you know from last month, I am registered for a writing workshop in June.  My manuscript was sent off to the coordinators a few weeks ago. Earlier this week I received my homework for how to prepare for the seminar and what to bring. And today I was given the name of the person who will be critiquing my story!  Eek!!

I have received writing critiques in the past through peers and teachers in college but nothing like this. My first thought was a ping of terror – what of he hates it?!

But my rational side followed suit…so what? And I don’t mean that in an I-don’t-care kind of way. I mean it in a positive, I-care-so-much kind of way. The purpose of attending this workshop is to learn and grow as a writer, to understand what publishers are looking for and to enhance my writing.  I am excited to have a professional author – yes, author! – review my writing and tell me what he thinks. I’m anxious to hear the feedback that he has for me and perfect my manuscript so that it will be loved by a publisher and kids some day.  I’m thrilled to meet new people – people who have a passion and love for writing and reading.  I can’t wait to take in the entire experience and grow as a person and as a writer.

So, things just got real.  I am venturing out of my comfort zone, exposing myself and my writing to criticism (on purpose!) and taking a BIG step towards accomplishing my goals as a writer. How awesome is that?!

Do you think he’ll sign a copy of his book for me?  :mrgreen:

Life is precious

Today I am reminded of how precious life is.

I learned this morning that a woman I met at the CHHO in November lost her battle with breast cancer last night. As I stared at the picture of her, I could feel my heart begin to ache. I remember hearing her introduce herself and sharing that she had a son. I remember the way her voice cracked as she said she was Stage 4 and that the cancer had spread to her bones. I remember the way my heart ached for her that day, as it aches for her again now. Though I only met her once, she left an impact on me.

As I thought about what her family, her friends and her son are going through right now, I broke down. I cried, a lot. There were big sobs and heavy tears and a lot of yelling despite being alone. I cried for this woman and her family and I cried for me and mine. I cried because cancer does not discriminate. I cried because cancer is selfish. I cried because I hate cancer. I cried because it was all that I could do.

And then I stopped. I wiped the tears from my face and stood up tall. I reminded myself that I am blessed to be here. I reminded myself that I need to continue living the life that I want to live. I need to follow my dreams and make every effort possible to make them a reality. I need to love hard, embrace every moment and let go of the things that cause me worry. I need to live. Because that is what I am here to do.

This is the only life I have and I want to make it the best life that it could possibly be.

Rest in peace, Traci. I pray for you, your family and your friends to find peace.

Dolphin view

Dolphin view 031716

Their jumps appeared random, tossing them out of the water for just an instant before they plunged back down into the blue surf. The waves were light that day, though they swam so close to shore that they seemed caught at the sand bar, between the sets of waves breaking. They didn’t seem to notice the current though, as they swam about freely; their dorsal fins bobbing up and down sporadically.

The swimmers didn’t seem to notice how close the creatures were, despite how many were just over the water’s crest. She imagined herself swimming amongst them, splashing throughout the ocean in search of food. The speed in which they traveled today, slow and circular, was nowhere near the speed of which she knew they were capable.

She wondered what dolphins think about. Do they have dreams, goals, ambitions? Or do they live for the moment, relying on instinct that has been perfected? Do they wander freely throughout the ocean, without care or concern?

A movement to the right caught her eye and she looked in time to see a small figure jump completely out of the water, causing her breath to catch at the magnificence of its leap. Glancing up, she peered at the sky above where the dolphins played. Though it was clear now, she could see the clouds rolling; their darkness casting a shadow across the sand behind her.

Sitting for another moment, she then waved good bye to the dolphins and the seagulls that fly overhead. Holding her sandals in her hand, she began walking away from the peaceful sound of the waves rolling up the shore. Unsure of how severe it will be, she braced herself against the storm, ready to take on whatever came her way.