Show Your Stripes!
Summer Bucket List
1. Go to the pool.
2. See Cars 3 and Despicable Me 3
3. Go to the zoo.
4. Get rid of neuroendocrine tumors in my liver.
5. Go to the aquarium.
You know, just a typical bucket list for the summer to make sure we do all the fun things we want to before school sneaks up on us in the fall. I’m sure your summer list looks very similar. Well, maybe number 4 looks a little different. I mean, let’s hope everyone isn’t having to worry their pretty little heads about a tumor in their liver. I mean, originally, I wasn’t either. I was just trying to shrink tumors in my pancreas and lymph nodes until one cell decided to jump ship (aka metastasize) and go do a little adventuring in my liver. I mean, look tumor- my liver ain’t that exciting. It was a whole lot more exciting when I was in college or in my mid-twenties when I still went to things called BARS. Now, an exciting night for us is hanging out at home, grilling on our Big Green Egg and having a couple of cocktails. Whoo! Living dangerously, I tell ya! I mean, why any nasty cell wants to go on vacay in my liver is beyond me.
Today, Mike and I had our own adventure to Tampa in hopes of getting to the bottom of this whole “some tumors shrank and went away and now another one has appeared” thing. I’m like a freaking magician who needs their own Vegas show! The plan for today was to fly to Tampa at 7am…which let’s stop right there. Do you know what that looks like? That means my alarm went off at 4am, so we could leave by 4:45 and be at the airport in time to do a little park ‘n ride and get to our gate in time. Uhh…that’s early. Thank goodness, my parents were watching the boys for us, so we didn’t have to torture them by waking up before the rooster crows…or so they say…honestly, I don’t ever want to live where a rooster might crow- that sounds so unpleasant to wake up to. Alright, so wake up early, fly to Tampa for blood work at 10. We got there in plenty of time, the lab was running about 40 minutes behind, but I got that done just in time to get to my fancy pants new-aged PET scan by 10:30. Technically, this was a GA-68 Dotatote scan that is the latest and greatest version of an octreotide scan. I got an IV with an injection that came out of this locked down time capsule looking box that revealed a needle wrapped in some sort of thick canister type of thing. Then I sat in a bay with a recliner (should have brought my book with me because if it weren’t for the stack of magazines left behind I would have been bored to tears) and waited for an hour. Hmm…I know! I’ll take a nap! I don’t have to drink the nasty contrast for this scan, so nap time here I come. Orrrrrrr not. Nope, lucky me- I DO get to drink the nasty orange contrast drink, so naptime is going to have to wait. After the hour went by, and I got to read Living Simple and chuckle over the article “5 ways to not annoy people in your workplace.” Number 2 on the list REALLY made me laugh, because I too also find pointless emails annoying. Anyhow, it was off to scan in an MRI type machine but one that is much quieter…so quiet that I could take a nap! Pretty sure I was snoring at one point, but not going to stress about that one. Scan was easy; didn’t have to have another injection. Lasted about 40 minutes, then we had an hour and a half to go grab some lunch before we had to be back for our follow up appointment with my PA.
So, where did we go? Portillo’s! So good! Love that we get a chance to eat some Chicago food in the South! We were finished eating around 1:30 (this because imperative later in my day), and we headed back to Moffitt for our follow up appointment. I told Mike at lunch that I had this odd sense of peace the night before. I felt like I should have had anxiety, but I just didn’t. It didn’t mean that I wasn’t worried, because I was…I am…but I just didn’t have fear. I felt nothing. I didn’t feel confident that I was going to be okay. I just felt nothing. Not empty…but very neutral to it all.
We ventured back to Moffitt, got there early (probably like the 3rd time I’ve ever been early to something in my life…see Kari- I’m getting better!!!) and waited to be called back. My appointment was at 2:30, and we waited until about then to get called back…then waited for about an hour to see our medical gurus. So…what did the scan say?! What is the plan for the tumor vacationing in my liver? Well. We don’t know. My peeps are a bit perplexed because my lymph node tumors shined bright like a diamond (not good…just so you know, on these scans if you light up like a Christmas tree then that tells the radiologist that you have cancerous cells in that area. This particular scan doesn’t give you size measurements, but it tells you location) and the liver one did not show up. Wait. That’s okay, right?! Not showing up sounds good (silly me, that’s what I was thinking too), but it not showing up means 1 of 2 things…1 option being clearly better than the other. Option 1- the tumor is a neuroendocrine tumor, but it is an aggressive one that does not show up on the scan. Option 2- it’s a hemangioma or something non-threatening. Uhh…I’ll take option B, please. The only time I’m really interested in being aggressive is when I’m reminiscing on my childhood being one of the only kids that could spell ‘aggressive’ in the 2nd grade because I knew the rec league cheer called Be Aggressive…B-E Aggressive. I said, B-E-A-G-G-Rrrrr-E-S-S-I-V-E. Be, Aggressive! In my wise old age, I’d prefer to hang out with the non-threatening option.
So, what do we do?! How do we know for sure?! Let’s do a CT scan. Today. Wait, when was the last time you ate? 1:30, (see- told you it was important) okay, so you can have the scan at 5:30 or later. My doctors started working their magic to try to get me squeezed in before the entire CT floor left for their weekend since it IS Friday. Damn, these people are going to hate me!
Wait, wait, wait. What about the other tumors that we KNOW are back?! Well, it’s back on chemo again…as in probably having to start back on Monday. Ugh. So, at this moment I’m doing a great job of holding it together. Not crying. Not quivering. Being strong. Believing in my motto, “you only know how strong you are when strong is your only option.” Let’s be honest, as soon as I’m alone with Mike I’m going to lose it and cry like a child! But for now, I have to be strong so I can take in all the info that is being fed to me. We’re going to have to make some phone calls to see if my chemo Rx can be reauthorized and then shipped to me by Monday…remember, it’s Friday at 4:15 now…yay! More people who are going to be annoyed with me because they are having to work until the last minute on Friday.
My PA (who I would like to add that I love her- I feel like she and I would probably be friends if we lived near each other…she is pretty, dresses cute and has little kids…so we’d totally hang out at class parties) asks how I’ve been feeling. I decide to throw out that I’ve been having back pains lately, but I’m sure they have nothing to do with anything at all. She asks me where exactly…and what do you know…it’s where my lymph nodes are located that are be cohabitated by tumors which could cause back pain. Really?! Can’t it just be regular old back pain?! So now, in my life I itched and I had pancreatic cancer…and now I’m facing the very fair possibility of having back pain which is due to the tumors that are pressing on nerves and only God knows what. Seriously?! Do they WANT me to be a hypochondriac?! There is still a real possibility that this is just coincidental, but it still makes my mind race.
She mentions that there are other forms of treatment that I may need. I may have to do the same chemo that I was on or possibly try this treatment that involves shots…or I may have to do both. (Both?! Really?!) She says not to stress yet because we need to get the CT results and then we’ll know more on how to tackle all of this.
Okay, so race out their office doors to race upstairs and get checked in for my CT scan and pray we don’t miss our 7:58pm flight. I get checked in and start drinking the contrast at 4:30 which means I can get my scan at 6pm…hopefully it won’t take long (usually doesn’t) and we can race to the airport to drop off the rental car and get to our gate in time. Shaking my Magic 8 Ball, and it says….”Outlook Not Good.” Damn. Mike was looking up later flights (there aren’t any today, of course) and looks up hotel options by the airport. Thank goodness we are together. The halls are empty. I’m having an emotional breakdown from all the emotion and stress of the day. I am really not happy that I’m having to drink MORE contrast for the day. This is making it my 5th cup today. No thanks! Fortunately, I get the IV put in around 5:30, they take me back for the scan at 5:50, and Mike and I are done and running to valet by 6:05. We just might make it. So much for that romantic dinner on the water we had envisioned earlier when we thought we’d be done at 4 and not have to fly home until 7:58. All the traffic Gods were working in our favor because we were going against traffic the entire way, made it to airport, returned the rental car, got through security and even had time to have a romantic coffee from Starbucks at our gate. Okay, maybe it wasn’t super romantic especially considering Delta didn’t put us sitting next to each other on the plane ride home, but we made it home which is most important. I started to feel awful after having 800oz of contrast in my stomach, but we got home safe and sound around 11pm.
Now, we wait for Monday. My doctors will have my scans back with results and they can map out what needs to happen. This weekend I am going to enjoy some family time and try to lounge by the pool. What does my dad always tell me, “don’t cry about things you can’t change”? Touché! If the news is terrible on Monday, then I’ll consider shedding a tear, but for now I am going to keep my chin up.