A Change of Plans

My cancer journey has been filled with the highest highs and the lowest lows. This past week I've experienced both one of the best mountain tops of the journey, as well as one of the most disappointing valleys I've had in a long time. My last post Her Heart is Full of Joy was a glimpse into how amazing I've been feeling the past few weeks- so much hope, and excitement, and joy. Last Friday, however, was something slightly different.

I'm So Excited

This is an excerpt from a post I had started about a trip we were scheduled to be on this week:

Hi, my name is Ashleigh and I'm going sailing NEXT WEEK!!!

Brad and I had been discussing taking a vacation someplace warm and relaxing for a while. After talking with my doctor and my other IBC contacts/friends, everyone was encouraging us to go as soon as possible, while I was still feeling good. I found a trip that looked pretty good on Monday and the got all the approvals needed (parents to watch the kids, doctor, travel agent to see if there was still space, etc.). On Tuesday, I reached out to a friend at my first job (worked there 2007-2011) who had been asking what my old coworkers could do to help our family out. We thought maybe they would be willing to help with the cost of the flights since they all have millions of frequent flier miles (I used to work in consulting and travel for a living), or maybe help pay for an excursion or two on the trip. By Wednesday, through the extreme generosity of my former coworkers, the entire trip was paid for. In 48 hours the idea was birthed, paid for, and booked. How crazy/amazing/wonderful is that? 

All that to say, pray for my folks next week as they so graciously watch my kids all week! They are so incredibly kind to allow us to go away, relax, and hopefully get our minds off of cancer for at least a short while. Woooohooo!!!

This will be me in a week!! (you know, with a little less hair...)

...

As you can probably deduce, I was a little bit excited about the trip. I went out and bought new bathing suits, sandals, outfits (you know, because none of my clothes fit...dang steroids) - essentially everything you could possibly need for a week in paradise. I even bought a full body UV 50 swimsuit for snorkeling, a very wide brim hat, and fancy Japanese high SPF sunscreen. The bags were packed, we were ready to go!

If only I was going to look this cool in my full-body UV swimsuit.

A Change of Plans

Then this week I could feel my tumor starting to grow again. I wasn't sure if it was just in my head or if it actually was growing. David and I went in for imaging in Dallas to check. During the mammogram, the nurses watched David- he was a hit! During the ultrasound he kept making raspberries with his mouth- he was able to keep the mood light. :-)

Strike a pose before the ultrasound!

I asked the radiologist to do an impossible task- tell me if my tumors are growing with no prior imaging to compare with, since all of the images from my past scans are down at MDA. It was extremely difficult to get a read on how large the primary tumor was.

The next day I met with my Dallas oncologist (who I just love, have I mentioned that recently??), and she agreed that the primary tumor had indeed grown.  We had three options 1) Continue with my current chemo, do my infusion as planned that day, and go on my trip, 2) Don't do chemo that day, go on the trip and then go to MDA and switch chemos when we return, or 3) Don't do chemo, cancel the trip, and go to MDA asap to pick out a new chemo.

My oncologists in Dallas and Houston pow-pow-ed and the MDA oncologist said definitely don't do another round of the same chemo if the tumor is growing because it would delay the start of a new chemo by three weeks. He did say I could still go on my trip and just come down to MDA when we returned, but you try enjoying a vacation watching your tumors double in size each night- ha! I know that if I came back and found out my cancer had metastasized I would never, ever forgive myself for going on the trip.

Cancelling the Trip

In the end I asked my Dallas oncologist what her recommendation would be if the trip didn't exist and she said hands down- don't do chemo today, go to MDA for scans and a consult, and start a new chemo asap. In the office with her last Friday, the decision was clear. The choice was so obvious, I felt like I wasn't even making a decision.

So that is what we are doing. Next week's trip has moved from the Caribbean to Houston. I will have an ultrasound, MRI, biopsy of my thyroid (it popped up on the PET scan at Christmas, just making sure it isn't cancer), a PET scan (to see if my cancer has spread), and then meet with the oncologist to figure out what to do next.

Our Reactions

Brad handled the news very well. He said he would rather have a shot at me being at our 10-year anniversary trip than go on the trip and possibly ruin any chances of that happening. I logically know that cancelling the trip was the right decision, but I was very sad about it.

I'm sad because it was a much needed time to relax, sleep in, and rejuvenate ourselves and our marriage for more steps in this journey. The setback before Christmas of my tumors growing through six months of chemo was like finishing a marathon and someone saying, "Just kidding, this isn't the finish line, you have six more miles to run." Now I feel like someone just kicked my shins and said, "Okay, now keep running!"

I'm sad not only about the trip, but the fact that we are once again, looking for another concoction that ["cross your fingers!"] may or may not work. All the while, we are quickly going through the list of drugs available for my hyper-aggressive version of triple negative breast cancer. If and when it does metastasize it feels like we will be out of quality options for treatment. And I've looked in the pipeline of clinical trials to see if anything looks promising for TNBC. Not a single TNBC trial is in a late phase.  A late-phase trial is where they are doing more than just shot-in-the-dark experimentation, where the drug in question seems to be effective and is close to FDA approval.

We will take that trip soon- I know it. But in the near-term, it's time to gear up for some long days at MDA...