Mike is the researcher in our family. I don’t want to read anything about cancer. I feel like I just find it depressing. I don’t know what applies to me, what is terrifying and what even makes sense. All the medical mumbo-jumbo is hard to read, interpret, and it’s really hard to keep your spirits up when you’re reading about cancer. Mike can sort it all out and he can relay information to me on a need to know basis. Currently we are in a game of Whack-a-Mole. Apparently, through all the blogs that Mike has read this is how many patients feel. Boom! Problem gone! Dang- new problem. Whack! Problem stabilized. Dang- need a new treatment. Bam! Take that tumor! Ugh- new tumor pops up. Stupid Whack-a-Mole. Stupid Whack-a-Tumor!
We had a trip to Tampa last Wednesday, and let me tell you, we were feeling high class. Real Housewives of Beverly Hills kinda fancy! I was Erika Jayne for the day! Our good friend’s uncle does ministry flights using his personal, private plane and kindly offered to take us to Tampa. We got to drive to the Gwinnett airport, park our truck and walk out to the plane. This. Plane. Was. Beautiful! It was so nice, and his uncle was SO kind! We zipped right on down to Tampa, stepped off the plane and our rental car was waiting for us. A nice rental car! Way nicer than our usual cheap rental car. I guess when you book a rental car through the FBO (where private plane’s land) the rental companies step up their game. We went straight to Moffitt where I had blood work, started my lovely big gulp of contrast and waited to get my IV for my CT scan. (Check out those lashes- either some Lash Boost or my fancy mascara combo is really working! I mean, they ain’t perfect, but they are looking longer these days!) Scan was complete and then it was off to meet with my PA. My mom always says that she is going to hope that the tumors just magically go away which I always feel is a little bit of a hopeless romantic dream, but I get that my mom is my mom and only wants me to be healthy and fine. Well, my PA kind of said just that. She said that my tumors in my pancreas and lymph nodes are not showing up on the scan any longer, and if it were up to her then she would let me take a break from chemo; my doctor wasn’t quite ready to release me though. The plan was to do chemo for the next 3 months, but come back at the end of July for another scan. If the tumors were still MIA then I could take a break from chemo. Break from chemo?! What?! Wait. Is that what she said?! Honestly, it took me a minute to register what she was saying. When it did hit me, I got all teary-eyed and got really excited that my mom’s (and mine) hopes were actually happening! Then it hit me and I turned to Mike in my joy and said, “this doesn’t mean I have to work next year, right?!” haha! Mike laughed and assured me that taking the year off was still the plan- this was just the bonus! We talked about how the tumors will return (the lovely nature of these tumors), but who knows how long they will stay gone. I could be off of chemo for only 3 months but maybe a year or two…or even more! A girl can dream, right?! I will have to continue to do scans at least every 4 months though to ensure the tumors are not cropping up which means we’ll be adding to our frequent flier mileage. My PA did say that this update was only based off of what she and my doctor viewed on the scan, so she wanted to wait and hear from the radiologist before this plan was official.
I feel like Mike and I skipped out of the office! We got to go eat at one of our favorite places because Tampa opened their SECOND location of Portillo’s! (Oh my goodness- Portillo’s is so good! It’s Chicago style hot dogs, hamburgers, Italian sausage, etc. So stinking delicious!) We then drove our little fancy tails to the FBO, parked our rental, handed the keys over and walked out to the private plane. We were hesitant to call anyone with our news because we wanted to make sure we heard confirmation from the radiologist before we tap danced our way to Facebook shouting out our victory. We were expecting a call later that day but as the day went on we didn’t get word. So we patiently waited, but we also decided we had to share our news with our family and close friends.
Thursday went by with no word. Friday morning, I had just gotten the boys in the car when I get a phone call from Tampa. It’s my sweet PA telling me that the radiologist read my scan and agrees that my tumors are not showing up on the scan…but…oh Lawd- here we go…buts are never good…she continues to tell me that while my tumors in my pancreas and lymph nodes aren’t showing up there seems to be a new mass in my liver. This mass has grown and looks different than the non-threatening hemangioma lesions that were already there and since this new mass has grown it proves that the current chemo treatment is not effective on this mass. Ugh. Really, I want to say more than Ugh. I want to shout a long, drawn out F-bomb but my kids are in the car, and I’m trying to hold my crap together…it’s hard…real hard! I tried to push my emotions aside and ask all the questions that I can think of before she gets off the phone with me. She says she’ll be in touch with me on Tuesday because my doctor is out of town until Tuesday morning and he wants to discuss this with her before she calls me with a plan of action. Okay. Text Mike. Get kids to school. Get to work. Mike is of course helpful and calming, but I’m having to walk in and teach students and push this to the back of my brain. Well…that’s a big ole fat fail. When I walk into my classroom I can’t even get out, “Hey guys! Today what we’re working on is…is…is umm”…oh God, here come the tears…don’t be that teacher that cries in front of her kids…can’t help it…walk out! Walk out! Walk away! Quick, before it becomes any more awkward than it already is! So, yep. I cried. A sweet student came out and checked on me, and after a few minutes I was able to come back in and share with them my news and apologize for being a whole bunch of awkward but I just needed them to work today and be low maintenance. And they were. I have good students. Several teachers, clerks, administrators came by my room to check on me. Apparently, word travels fast when your teacher is a sobbing mess in front of students. They kindly offered to cover my classes for me, but I wanted to be there. My students were a happy distraction! Besides, in T-minus-3 hours I was out of there and headed to meet my bestie at the spa for a girls night! I could make it! And I did. I cannot promise I was Teacher of the Year, but I was there and helped students through their activity.
The wine tasting, spa day, dinner out and comfy hotel beds with my best friend who was visiting from Michigan could not have come at a better time. It was exactly what I needed- laughter really is the best medicine. I would love to give you all the full details of our weekend but you would be bored to tears because we are moms that look forward to snuggling in beds early, getting to sleep in without a child kicking us in the back and we find our own jokes hi-lar-i-ous while others probably don’t think we’re so funny. I mean, at the wine tasting we got to taste 8 1oz pours of wine, and it took us 2.5 hours to get through the whopping 8oz of wine because we were too busy laughing and joking and people watching. Tipsy is not a word I would describe us by the end of this activity. Even at dinner we each only had 1 drink because we were too excited to get back to the room in our jammies and snuggle up in our beds without children or having to watch children’s shows! By the way, did you know Chateau Elan hotel does not have Bravo OR HGTV?! Is that crazy to anyone else?! I mean, I thought EVERYONE watched HGTV! Any who, Jiffy and her kids stayed with us all weekend which was awesome because our kids got to play and hang out too. They left on Tuesday morning, and what do ya know…I got my Tampa phone call on Tuesday at the end of my last class. I was able to call her back once class got out and Mike and I were able to take this on together. We got a mixed bag of news…good news- Dr. Strosberg agrees that I can take a break from chemo. I don’t even need to do chemo over the summer! I can start this month taking time off. Yahoo! That is exciting, and we can see what the scans look like in July to figure out the plan after that. As for the bad news, I need to come back to Tampa pretty quickly to do a GA-68 dotatate scan. (A what?!) Basically it seems like a more advanced version of the octreotide scan that I have become all too familiar with. It’s a little concerning that they want to see me soon rather than getting to wait until my July visit, but it is what it is. Here’s the Whack-a-Mole…I whacked one problem and another critter pops up. Apparently, there are different procedures that can be done to remove it. We don’t know which approach will be taken until we get the new scan done and learn more about this new inconvenience. So…we wrapped up the call with a plan to go back to Tampa in a couple of weeks. No sense in stressing about it right now…don’t cry about things you can’t change, right? I’ll know more after this next Tampa trip. So I’m going to keep plugging away at it. I’m going to focus on getting through the school year (not cry in front of my kids again) and getting to the next appointment.
I did have flowers waiting for me on my doorstep today from my sweet mother-in-law, so that definitely brightened my week! Gotta focus on the good stuff. So that’s the update, folks. The neuroendocrine saga continues.
Ashley, You are amazing and such an inspiration. I am so happy for the vacation from chemo and so sorry to hear about the new Whack-a-Mole. Dick , Rick, Tom, & I include you in our prayer before dinner every night .
We pray for your treatments to continue to be successful and continue working and help with healing. We will now add a request for help with a plan to treat this new Whack a Mole . I love how you see things through the glass that is half full or even through 1 oz at a time at the tasting. Keep smiling that beautiful smile and yes those lashes are really something. With love and lots of prayers, Aunt Eileen
i find it difficult to post meaningful comments on your blogs because what you write is so damn sobering and also incredibly inspirational. You are simply amazing. bundle of strength ! All our love! The Franks.