tis the season to be... jolly... and sad

Hello dear friends. I hope you are all in the midst of celebrating the holidays with those you love most. I've never really taken the time to really think about all that goes on around Christmas - but now that i'm sitting here with nothing else to do I'm finding it quite interesting the things that are coming to mind.
I've always loved Christmas. In my family it always ranks as our "favorite holiday" (beating the 4th of July by a narrow margin). I love to bake and eat cookies so that comes in handy this time of year. I hate decorating,  but for some reason I love to "deck" my house for Christmas. I love looking at Christmas lights...and am a total dork about it when I see people's houses all lit up. Even though i'm not the best at it, I love to give people gifts. I love my great grandma's peanut brittle - and this is the only time of year that my family makes it (including me), making it all the more special. I love sitting in the family room at night with the Christmas tree all lit up. I love Christmas cards that come in the mail - a tradition i hope doesn't get completely killed by social media. And mostly I love spending time with my family - eating dinner, playing games, watching TV, etc.
Growing up, my grandparents (my mother's parents) had this great tradition of doing an "open house". I believe it was on Christmas Eve. We didn't get to be there every year, and I'm not exactly sure how the tradition started, but what I do remember was a basement full of grown ups. My grandma hung decorations from the ceiling with a mistletoe hanging right in the center of the room (look out!). They had a bar and my grandpa would be behind it. I can remember as a child clinging to my mother's side and saying hello to my grandparents friends and neighbors....but also my extended family. My great aunts and uncles would be there, as would my mom's cousins and siblings. My cousins would be there too, so inevitably we would all go upstairs to get away from all of those grown ups. My husband is always amazed at how "far" I know my family; meaning that i not only have relationships with my moms siblings and their kids, but I also knew my grandmas siblings and their kids (and their kids!). The Christmas open house is part of the reason why and i'm so thankful for it.
Christmas Day was reserved for "immediate" family, and i'm sure it's similar to what many of you remember growing up: grown ups hanging out in one area of the house and kids hanging out in another. Once dinner was ready the grown ups sat at the "grown up table", and the kids at the "kid table".  Definitely some of my favorite memories with my cousins...sitting at the kids table in the basement. My grandma didn't have a dishwasher, so after dinner it was all hands on deck for cleaning dishes. Once that was done it was time for gifts...and then the BEST part of my Christmas memories: music. My grandparents had a player piano and an organ in their basement (yes..and a bar. it was a pretty fantastic place!). To begin, my mom would be at the piano, and my grandma at the organ and they would play from a Christmas song book and my aunts, uncles, cousins, would all stand around them and sing. We would get through the entire book. And, of course...that wasn't enough, so my grandma would get out the "scrolls" for the piano and we would sing some more! Generally a grand finale of  the Hallelujah Chorus that was always very entertaining.  After all that you would think that the night would be over, but I know i never wanted it to end and I don't think anyone else did either, so the cards and games would come out. Precious wonderful memories. I am so blessed with the love of FAMILY.

So why am i sitting here at 1am writing about all of this...what's all this got to do with anything? I'm not exactly sure. For some reason I went to bed and woke up about an hour later and became completely overwhelmed with emotion. I couldn't stop crying. I got up, washed my face, tried to lie back down and...more tears. I decided I needed to get some things "out" and that's what this blog is for so here i am.

I think i'm struck by the perplexity of Christmas. On the one hand, there is what I described above:  Joy and happiness and family and love. But for many there is also sadness. I have a friend who will be celebrating her first Christmas without her mother...and how strange that must be to be in this happy, joyous time of year and to also be filled with grief. And i know she is not alone in that feeling. I think my family (my parents and siblings) is also walking a tightrope of emotions this year as well. Our original plan was to celebrate the weekend after Christmas, but with my chemo schedule everyone had to make a quick change of plans. We will be together the day after Christmas - but they will need to get back to their homes that night so it will be shortened a bit. Not the lingering-not wanting it to end-hanging out til the wee hours playing cards/games- that it usually is. And there will be a sadness that we are all carrying with us these days, even though i'm sure we will try to bury it down deep for the day.

And it's been different for me personally. I didn't do any baking this year. With my stomach pain, I just can't stand that long. And while most people are "oofing" and "ughing" over how much they've eaten already this season, I'm sad that my appetite isn't what it once was. I would love to be able to eat so many cookies that I was just miserable! In so many ways everything is different because "i just can't" because of the pain. And that makes me sad.
There. I got to the bottom of the tears. I knew I needed to sit here and get this all out.

The next 3 days will be filled with Christmas. There will be traditions. There will be family. I so desperately want to be able to just enjoy every minute. To soak up all the love and happiness. To go to church. To eat delicious food and play games and cards and hopefully a little piano too.

Merry Christmas.

the fight continues

Well, as it turns out, Mother Nature had other plans the night of the dinner/dance - cancelled due to snow and ice.  Bummer. Thankfully, I have great neighbors and a family room big enough to dance in.  And that's all I'm gonna say about that.  :)

As most of you probably know from my Facebook post we made the trip to Mayo.  It is a humbling place to be for sure. I was reduced to tears as we waited for our seats for dinner by the number of people who are being wheeled around in wheel chairs. The reality of that place and the reason people are there is hard. And there are so. many. people there. Heartbreaking.
We (Ben, my sister Mia and I) spent a lot of time in a little room waiting for the doctors.  We met with a Fellow first, and then met with him and the oncologist. Both good doctors with lots of questions.  One of the questions the Fellow asked was why I was there? The response that immediately came into my head (but not out of my mouth) was, "because i don't want to die and i'm hoping you can save me".  Oof.

So, the news wasn't great.  The tumor hasn't changed....which really sucks cause the chemo sure has been kicking my ass! I was hoping it was kicking the tumor's ass as well. I tend to focus on the negative here...the tumor hasn't shrunk.  But if you want to look on the bright side...the tumor hasn't gotten any bigger either.
They want to try a different chemo regimen.  It would involve a new medication (a variation of a medication i reacted to earlier) and a more intense schedule. They would like me to try 4 weeks on, 2 weeks off.  Knowing how sick i get, this is pretty daunting for me. They are reducing (slightly) the amount of one of the meds and are hoping that maybe it will result in my not being quite as sick. Also might try a couple new nausea meds (fingers crossed). They are hoping this new med combo along with the intense schedule might work to shrink the tumor.  If it turns out that I just can't tolerate the meds for that long, they will back off to the every other week schedule i'm on now.

There is an ever-so-slight chance of surgery. They talked to a surgeon who told them that normally, he would not consider doing surgery. They do this kind of thing for pancreatic cancer patients, but not for metastatic colon cancer. However, because I am so young and in decent shape, he will consider it.  Of course there is an IF... they want me to have a PET/CT scan (which I would have to do up there).  IF it comes back clean, then he would consider surgery.  However, if it shows there is "disease" other places in my body, then he will not consider it.  They also really need the tumor to shrink.  He mentioned the possibility of radiation, but it was just a brief comment so I'm not really sure on that.  He also made it a point to tell me more than once that regardless...the surgery is VERY high risk.

There you have it.

The news of the unchanged tumor and of more chemo sent me into a downward spiral. It was a tough couple of days following the appointment. I'm feeling a little better, mentally, today. I'm having abdominal pain again, which is irritating (and painful). However, I'm ready to jump into this fight again. Get chemo started and hope and pray that the tumor responds to the new med.

I can't tell you how much I appreciate everyone praying so hard for me and my family. If you ever think "i wish there was something I could do"....send up a prayer.