The Roller Coaster…

I am back on the roller coaster… nothing to make you feel bipolar like cancer. I am sure you all noticed by the tone of my last post how excited I have been about my progress and moving forward with radioembolization. Well, a few days after the call to let me know that I would be getting the magic beads, I heard not so good news. As I explained briefly, part of moving forward with the radioembolization procedure (which I will explain in more details later), I had to undergo a “mock” procedure where they mapped the blood vessels in my liver. They then injected me with fake radiation and sent me off to nuclear medicine to take high tech pictures. So I knew that they would be getting a good look at my liver.
A couple of months ago, my cancer marker started creeping up so very slightly. The change was so minimal that my oncologist didn’t even address it. The second time it went up, it was still within the normal range but I was freaking out. In that meeting my doctor told me “and you CEA level looks great”, and I just responded first silently in my head “wtf? are you saying it’s going up!!!” then after putting my filter on I asked with a smile, “what do you mean, it went up 1.3 points?” and she just said it was well within the normal range and not to worry. I had also been told by my other oncologist to not be worried until it reached the double digits. But guess what – I was already starting to freak out as I had noticed that I had been feeling more tired lately – was it just psychological or my marker slowly rising was an indication of something else? Well since I knew the interventional radiologist at Shands would be getting a good look at my liver, I wanted him to tell me if he saw any “new growths” on the liver. When they called me to give me the green light for the procedure I asked that question but of course the LPN didn’t know the answer. I then called the nurse practitioner and she didn’t have the answer either but assured me that she would ask the doctor. I got a call from her shortly after explaining how the doctor, “to his surprise”, saw some activity in some of the tumors that were thought to be inactive. I was not that surprised but really bummed and disappointed. This does not change the course of action and the good news is that knowing this data, they can put more radiation into the beads. I am left with many questions and am now wondering how they will be able to monitor me in the future. I have heard that the CEA marker is not always a reliable way to monitor disease progression, my doctors were not concerned about the slight rise but I felt otherwise so I guess I will need to be even more proactive in the future. I was able to reach my oncologist at Shands by email (as I will not see him for another 2 weeks). I am still so incredibly grateful and touched by his willingness to answer my questions when I have only met with him twice. He responded that yes it looks like the cancer was starting to wake up and this is even more reasons to stop the chemo I was on and change things up, so according to him, this remains the perfect time to move ahead with this procedure. It is so crazy how you can go from feeling so high and optimistic, to feeling like you have been kicked to the ground and hopeless in a matter of seconds. It always takes me a few days to digest such news and then I get back up, roll up my sleeves again and say “ok, I am ready, bring it on!”. This time, the timing sucked, it was right before Halloween and truthfully I just wanted to curl up in bed and hide but this is never how I want my kids to see me. They were so excited about Halloween and trick or treating, I didn’t want to ruin it for them. Thanks to all my friends who shared my disappointments with me this weekend and to my husband who remains so patient and understanding. I am feeling better this morning and ready for my procedure Thursday. My parents are so generously coming down to help us through the next few weeks, I am so very lucky to have them.

As I have said before, back on the paddleboard paddlleboardgirl!


7 thoughts on “The Roller Coaster…

  1. Rachel, you are amazing. I am holding you deep in my thoughts and prayers. I am glad to hear your parents will be down, but please let me know if I can help in anyway. Keep up the great fight!
    (((Hugs))) and lots of LOVE!

  2. This happened for a reason. Perhaps the timing was poor last week, but the knowledge gives you power this week! Thursday your magic beads will address this issue. Stay strong!

  3. Today is the day Rachel – i am sending my positive thoughts, prayers, strength and love to add to your own! Keep kicking ass one marker at a time!! I am sooo proud of you gurl!

  4. Hi Rachel, I have this blog in my bookmarks bar, so that it is easy to just check in now and then. It happened to be open this morning. Gavin had been playing on the computer and probably accidentally clicked on your page, and I am so glad he did. It must be so hard to be on this emotional roller coaster. I adored your perspective that you shared previously that you are focused on “healing” and not “beating.” Stay with that mindset, girl! It has served you well, and will continue to do so. We are just down the road, please throw your boys my way at any time. We would LOVE it. 585-991-8724.

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