I want to be number 2.

I’m tired. I know, I know, I say that a lot. But I am. I thought it was because I was pushing myself towards normalcy and was excited for time off, despite appointments, to rejuvenate. I napped with Jacob almost every day for 2-3 hours at a time and was still ready for bed with him at 830pm.

I went to the checkup with my oncologist today. He spent lots of time with me and we talked about how I’m feeling. I expressed my tiredness to him. He asked if it’s something that I simply wanted to mention or if it’s gotten worst over the last 3 weeks. I said that I feel like it’s gotten worse, however I don’t know if it’s because I was off and I just had the opportunity to nap. Maybe I’m always that tired but don’t normally nap?

So we checked my blood count and my platelets, which have always been normal (even the low end of normal during chemo), were 80. The range is 139-361. Since I’ve never had platelet concerns, they did another blood draw, this time from my arm instead of my port. 86 this time. Well, darn. I guess that explains why I’m so dang tired! A quick review of the side effects of Afinitor and sure enough, there it is.

I go for my Xgeva shot next week so while my numbers aren’t low enough to warrant a transfusion yet, I’ll have them drawn again and an eye kept on them going forward. 

In other news, I was showing him my radiation burn (I swear it’ll heal someday…) and his jaw dropped. “Meghan. Do you have pictures of these skin lesions from before starting Afinitor?” Sure, somewhere. “These look significantly less inflamed than before…and didn’t you have more?!” Well…actually…

I had mentioned to Joe this past weekend that some of the cancer bumps on my chest seemed to be smaller and no longer red. I expressed that I didn’t know if it was my mind messing with me but the bumps on my side seemed smaller too.

I reached up and touched my right neck and said, “The Nurse Practitioner is having my scans include my neck at the end of the month. I had a swollen lymph node that could be easily felt. I can’t feel it today.” He reached up to feel my neck. “And it was there for a while?”  Yup. I looked up and he smiled brightly.

There are no words. There are MANY ups & downs in this life with cancer. Lately, it seems that I am fighting to find the right drug. Maybe, just maybe, this is it. He shared a story with me about his trip to the San Antonio Conference last month. One of the oncologists gave a speech about one of his patients that was triple negative and had been on Afinitor for the past 2 years. I smiled and said, “Well, I want to be number 2.” Please?

Who knows if it’s working. I had my tumor markers drawn today and I’ll have scans at the end of the month (though my doctor wouldn’t necessarily stop this drug at that point because it wouldn’t have been long enough…depending on the scans, of course) but today, this appointment brought me to tears. I want to be number 2. I want to be the reason that they start giving this drug people like me, who are triple negative, because it is saving lives. Because it will save mine. I hope & pray.

So today, I will snuggle my sweet boy and kiss my husband and believe that perhaps I have found a drug that will help me outlive the time I’ve been given.

Spread the love, my friends. Today is a good day.

The night before Christmas…

Growing up, my grandparents had a barn on their property. I have no idea what they originally used it for (anyone?) but it became the place that we gathered for Christmas. My grandparents on my momma’s side had eleven children. Add in their significant others and a few dozen (50ish?!) grandkids and Christmas became a rather large event. There was never a discussion about what to do or where to go – we always gathered at my grandparent’s barn.

The grandkids were all gifted wooden stools with their names engraved and a burlap sack. We all brought our stools to sit on while opening gifts. My grandma always arranged a gift exchange between the grandkids and one for the adults. One of my uncles would dress up as Santa and handed out gifts.

The sacks were filled to the very top with gifts from my grandparents. Each grandkid collected something that my grandma decided when we were born. My collection was brass and my sack was always loaded up with different types of brass, mostly antiques, that I would display on a huge shelf in my room and play with all the time.

The gift exchange was no joke. We would sit on our stools for hours while the presents that spread across half of the barn slowly grew smaller as our collection around us grew bigger. There were tons of laughs, lots of hugs and some of the most amazing memories. I would usually fall asleep in the car on the way home, believing whole-heartedly that I could hear Santa’s bells ringing high above.

Since moving to Florida, we spend Christmas Eve with Joe’s family. Though the setting is different and the family is smaller, the love and laughter is there. My cheeks hurt tonight from smiling so big and laughing so hard. We enjoy a fabulous meal of Italian food prepared by Joe’s mom, indulge in cannolis and share gifts that we thought hard about giving each other. We even have a tradition of giving out a bag of coal to one person each year based on something silly or funny that they did that year.

Tonight was no different with the exception of my momma joining in on the fun. I have been enjoying this past week with her here but this is the first Christmas that we have spent together in well over a decade. Having her here and buying matching jammies means so much to me.

And then there’s Jacob. Every age I say “this is the best!” but this age…oh, how I love it. He is truly becoming his own little person, talking and asking questions and learning more and more. He has been counting the “sleeps” until Christmas & Santa and he even left out cookies (cooooo-kkkeeess), milk and a carrot tonight. 

One of his gifts tonight from grandma and grandpa was a pair of binoculars. Although he enjoyed his other gifts, these went around his neck and he didn’t let go. He played with them all night and even looked for Santa in the car on the way home. When snuggling in bed tonight, his excitement was palpable. He looked at me and said, “Momma, I look for Santa?” Sure, love bug. He lifts up the binoculars and looks through the half window above the curtains. “Santa, where are yoooouuuuuuu….hohoho (deeper voice)…Oh! I shink he’s ouside.”  I am fairly certain we did that routine for about 45 minutes (and one potty trip!) before he looked at me, kissed me and said “I go to seep so Santa comes” and rolled over. Oh, be still my heart.

This Christmas is special, like all others. But it’s filled with more love, laughter and snuggles than I know how to contain. I can’t help but smile ear to ear as my mom, Joe and I sit by the light of Jacob’s little Christmas tree.

Merry Christmas to all of you. May you each be gifted the blessing of love and happiness this holiday season and always. Spread the love!

Life is precious

I am a firm believer in spreading the love. That doesn’t have to be a “big” thing. When you have a dream about someone, share it. When someone is on your mind, tell them. If a memory pops in your head and makes you smile, make that person smile too. You never know if that person may need a hug, or a word of encouragement or even just a simple hello.

This past weekend, my family lost someone. She was even younger than me, it was completely unexpected and she was carrying her daughter in her belly. It’s heart wrenching and I don’t have the words to express how I feel about it all.

There are moments in life that give us pause and force us to reflect on the life that we have been blessed with so far. We need to rejoice in those moments. Yes, we all have regrets and sadness. But we all have happy times and joy too. Sometimes we need to dig a little deeper to find the good moments. Sometimes a small gesture or hello can change someone’s world.

Please keep my cousin and his sweet family in your prayers. They need to be wrapped in love through these times and going forward. We love you so much, David.

Keep spreading the love.

Scans, scans, scans

Scanxiety is a very real thing. I thought for sure my last scan would show progression and it showed stability. This time, I worry once again about progression but hope for more stability. Knowing my tumor markers are up and there is recently a swollen lymph node in my neck is not helping the Scanxiety but I remind myself that I can’t change the results. I can only change my perspective.

I’ve been injected for the bone scan so I’m radioactive – though significantly less than a PET (4 times less) so I can still snuggle my sweet boy tonight. I’m drinking the liquid iodine in preparation for the CT scan of my chest, abdomen and pelvis. The iodine takes 2 hours and the radioactive injection takes 3 hours before scans. The CT is relatively quick, while the bone scan takes a bit longer since they are taking more pictures. I have a slight view of the computer screen during that exam (depending on the angle of the picture). It’s crazy to see the images of my body lit up in different colors. Plus Joe can come with me for the bone scan – bonus, company!

The *hope* is that I will continue to show stability and stay on Xeloda, doing scans in another 6 weeks.  I don’t have any new pain, though I have been lucky that the pain hasn’t been unbearable aside from radiation. Honestly, I want to make it through the holidays and my January vacation without having to make any additional cancer related treatment decisions. But, we shall see.

So for now, we wait for all the different liquids to work their way through my system. My doctor will likely call me this afternoon with the results. Though I can never truly prepare for the news, I know that whatever it is, I will work through it with faith and determination. 

Stay well, friends. Continue to spread that love!  💚

Keep spreading…

During my appointment last week, my blood was drawn and my tumor markers were taken.  They typically take a few days and I looked online for the results this past Saturday.  They are elevated, above the normal range.  For me, this has been an indicator of progression.  When they were up previously, it took a few cycles of Xeloda for them to go back down to the normal range.  I watched them decline a bit each time until they were normal.  I recently took a break from Xeloda of almost a month from mid-October to early November.  My hope is that my tumor markers are actually on the decline again, assuming they rose during the break, and that restarting Xeloda is helping to bring them back down.  This is my second week of my second cycle since restarting.

Is this update concerning?  Yes.  Is it scary?  Of course.  Do I wonder what this means?  Absolutely.

But…

There is nothing I can do for now.  I had obviously hoped that I would have a break, which I may still, but I also may not.  I have planned scans next week and blood work, including my tumor markers, the following week.  So there is quite literally nothing that I can do right now.  I am still looking into alternative options (essential oils, detoxing and looking into a doctor that specializes in alternative treatments), while I also know that there are clinical trials and standard treatment options available to me.

So, what does all this mean?  Well for now…nothing.  I saw the results, I feel the same physically and I already have a path forward to find out whether or not there is progression.

Well actually, I can tell you what this means for me.  It means that I keep living my life.  I keep working, I keep decorating for the holidays, I keep shopping and planning out gifts, I keep making plans, I keep loving on my family and friends, I keep snuggling my sweet boys and above all…I keep spreading the love.

Yes, life is stressful.  Yes, there is always fear of the future.  But I am continuously shown love from my family and friends.  I am so incredibly blessed.

And that, my friends, is what matters.  Spreading that love, accepting that joy and embracing all that each and every day has to offer.  That is what makes this life so magical, so wonderful.

Keep on spreading that love, my friends.  Every bit of it matters…promise.

Sister weekend

I grew up with 3 sisters. We did not always get along – we absolutely had our fair share of fights. We shared rooms, sometimes beds, we had 1 bathroom and drove each other batty more often than not. But we were there for each other. Three of us were know as “so-n-so’s little sister” or “little B”. We had our moments of being close and not so much but we were always there for each other…and we always will be.

A few weeks back, my big sister asked in a group chat if we could have a sister weekend. I agreed, expecting it to take some time, thinking it was a pie-in-the-sky idea. When she suggested a weekend that was around the corner and looked up plane tickets, I knew she was serious. We all figured out the logistics and set everything in motion.

Our first ever sisters only weekend was on. My three sisters traveled to me, I snatched them up at the airport and we headed to my happy place – the beach. We stayed at a hotel where every room had a balcony facing the beach and where we were only steps from the ocean. Though Friday was windy, we bundled up and made the day fun. The rest of the weekend weather was pure Florida perfection. A slight breeze cooled the day while the sun shined brightly over our heads. Though the sun set early, the moon, stars and even a planet lit up the sky above us.

We spent the weekend having major belly laughs, swapping stories of the past, encouraging each other about future decisions and snapping photos on our disposable cameras (cannot wait to see how they come out!!!) We seriously laughed until we all cried, we walked arm in arm along the beach looking for shells and the four of us snuggled up on the two full beds and watched one of the movies we grew up watching (Labrynth – which just happened to be on TV last night!!).

We haven’t always gotten along, we all are guilty of “borrowing” each other’s clothes and I’m pretty sure we have annoyed each other at some point. But we are sisters -through thick & thin. This weekend was a wonderful and needed reminder of just how much we mean to each other. I don’t know what I would do without my sisters. They each offer a unique and inspirational perspective to me. I love them all so much.

Here’s to the next Sister Weekend!

“It’s Christmas!”

christmas-120116Growing up, we had one Christmas tree in our house. It always stood in front of the picture window facing out towards the street, for all to see. We would even rearrange our furniture if a couch or chair was in front of the window when we were setting up our tree.

When I moved to Florida, I learned that multiple Christmas trees in a home is quite common. This was the first that I had heard of it and over the years I’ve loved watching people have multiple trees in their homes that had different themes. It was like Christmas in every room – something that seemed so wonderful to me.

This week, we took Jacob to pick out a tree. Every year with him is fun and I love sharing traditions – new and old – with him. But this year…oh, this year is so wonderful. At this age, he is understanding and asking questions and making his own…fun in the world! We went to pick out a tree and he walked up and down the aisles, arms outstretch and head turning side to side saying “These are nice! Look how nice!” It made me laugh & smile & tear up all at once. He had a ball “hiding” in the trees and got very excited as Joe pulled out different ones to see which Jacob loved. Oh, it was all so wonderful.

After we had chosen a tree, we started to make our way up front towards the registers. To our left, we spotted mini Christmas trees. Jacob immediately ran up and started picking up the different trees because they were his height. They were so cool!! I don’t remember ever seeing “little” trees like that before and we couldn’t pass them up. Jacob picked out his own tree out and even helped carry it to out.

We typically put the big tree in front of the bay window because I love that it can be seen through the window. It causes such a beautiful blue and white glow. But we spend most of our time in the tv room, which is decorated but doesn’t typically house a tree. So, Jacob’s tree solved that dilemma! His tree fits perfectly in the room and helps to create the Christmas feel.

When unpacking the box that holds Christmas ornaments last night, Joe found a cd. Upon seeing it, it made my heart swell. Half a lifetime ago, my uncle used to make Christmas cd’s for us every year. It’s filled with the classics and he would make a new one for every year. With 10 brothers and sisters and tons of nieces and nephews, this wasn’t an easy task for him. But he did it without complaint every year and we would always listen to it in the car driving around upstate New York to get in the Christmas spirit. Joe immediately popped it into the cd player while we decorated the tree. We sang, we danced and we spun Jacob around to the music. He giggled & smiled & even picked out his own ornaments to help decorate his little tree.

When we were all done decorating the trees and the cd was over, it was time for bed. Despite that fact, Jacob refused to take off his Santa hat. The little munchkin fell asleep with it on. I can’t think of a better way to end November and start off this wonderful holiday just right.

As Jacob says, arms outstretched, “It’s Christmas!”