Life's Journey

There is a lot to catch up on. Let's start with the fun news. We had a fabulous Thanksgiving with the family in our home this year. It was so nice to have Roy's family all together and having the kids around was great. There were 16 of us, 4 are kids: my parents, Roy's parents, his grandma, his aunt, his brother, wife, and kids. This easily could've been chaotic but I had a plan. I, as always, laid my plan out in a color coded spreadsheet. Everyone had responsibilities for Thanksgiving. Someone had casserole and someone had trash duty, there was a bartender, a turkey chef, and 3 little artists that helped decorate. They laughed at my spreadsheet but… it worked Everyone had things to do on Thanksgiving and we all let everyone do their part so it worked. It was a nice day spent with the family - I couldn't ask for more. I feel blessed that Roy's family has embraced me and given me so much support and love. I am lucky to call them all family. I've said before that having cancer changes your perspective and it's times like these that I am very aware of this. I feel so grateful to have these moments with family. Every laugh, each hug, all the smiles, I try to memorize every moment and keep it with me. These are the moments that life is all about. I hope that all of you experienced these moments of your own this holiday season. Carry them with you always.

After the dust settled from all our visitors and Thanksgiving it was time to come back to the real world. I had my PET scan this past Tuesday and a consult with Dr. B yesterday to go over the results. As I suspected, the last chemo agent wasn't as effective as we'd hoped it would be. There is some disease progression. The good news is that it is still confined to the pelvis area, it has not spread to other organs or body parts. But they are seeing that in comparison to the last scan shows the cancer has gotten a little more active and some nodules are larger. It appears that some of the nodules are morphing together to create larger masses. Because it is confined to the pelvis it is pushing against the colon which is creating havoc on my entire digestive system. It is also pressing on the ureter so the stent I have placed is still necessary. It's so disappointing to be fighting so hard only to find that it's not working!

What does this mean? Well, it means that the cancer is winning the battle for now. But there are other options so we can keep fighting. Dr. B, Roy, and I talked through our options. There are a few chemo agents that we haven't tried yet. Dr B feels that my best option is something experimental. He is partnering with Dr Gordon, the experimental guy, to determine what they think are the best next drugs to try. Roy asked about surgery, he questioned if they could go in and debulk some of the disease and maybe relieve some of my side effects. Unfortunately, Dr B was quick to say that he felt there was more opportunity for more issues than benefits from surgery at this point.

What are next steps? We know chemo will be resumed soon we just aren't sure which drugs to use yet. Once the docs talk Dr B will call me and we will get started. I have an appointment scheduled for the week of the 16th to work out details and plan a schedule with Michele.

How am I feeling? Not awesome. I mean this news is better than I thought it was going to be, but it's still not great news. No matter how many times I hear it it doesn't get any easier. It's been 4 weeks since my last chemo so I'm starting to feel the side effects from just the disease and it's not great. There is a lot of pain, pressure, constipation, nausea, lack of appetite… I'm managing all of this the best I can but I have come to understand that these things are just going to continue to progress. I'm working with another new Nurse Practitioner, Bill. He works for a Palliative care/Hospice that works with my oncology center. Michele (my super nurse) set up the appt and thought he would be helpful in managing my medications. Bill is very nice and has been super helpful already. His primary focus is my medication schedule and ensuring that my side effects are managed effectively. He will make home visits from time to time to check in. I think it will be helpful to have him join my team of caretakers.

Roy and I are just trying to live our lives so we are preparing for our next big adventure! We are going with some friends to Fairbanks Alaska next week. I know I know we are crazy and it's going to be freezing but we are hoping to see the Northern Lights There is supposed to be great viewing opportunities and this is the best time of year to go. Fingers crossed that we get to see them!

As you can see I've been on quite the roller coaster lately. There have been great highs and some crummy lows over the past month. I try to focus on the highs and sweep through the lows as fast as I can. I wish I always had good news to share on my blog but sometimes I have to share the lows with you as well. It's been pretty stressful around here lately but we are doing our best to stay positive and keep moving forward. I still believe everything happens for a reason… sometimes it just takes a while to figure it all out.

Hugs and Smiles,

Sarah