Today we woke up angry. Not at each other. Angry at this disease and angry that the medical world doesn’t want to move as fast as us. WHY CAN’T WE JUST START NOW?!?!?

Yesterday I wrote about time. Time just feels different now. Every minute, heck every second, is so precious. I think this is why we feel like things aren’t moving fast enough. I sit and think “Has it really only been 3 days?”. But yes, in reality only 3 days has passed. 3 days is nothing. Nothing has changed. Yes the disease is progressing but it’s not gonna kill Sean overnight. We have been reassured that basically the only thing that has changed since 3 days ago is the knowledge that we now have. The knowledge that yes, Sean has pancreatic cancer. Yes, Sean is dying. BUT, Sean is not dead yet!

So here we are on Day 3 ready to fight. The tears come and go but mostly there is this feeling surging through our bodies that says our fight will come but now it’s time to train. And train we will. Eat. Sleep. Hug. Repeat. We are training Sean’s body, mind and soul for this next difficult road.

So what happened today and what are the next steps: Sean had his biopsy procedure and they placed the chemo port as well. Both procedures went really well. I came into his post-op room and he said that was the scariest thing he has ever done. Sean is very claustrophobic. For the port surgery, they had to cover Sean’s face with a cloth. He said he had tears streaming down his face the entire time. I asked him if they could have knocked him out and he said, “they gave me that option but said the surgery would need to be rescheduled to tomorrow to allow for sedation. Not acceptable. Now it is.” I could not have been more proud of him at that moment. Tears were streaming down my face because at that moment I was without a doubt sure that Sean has every intention of fighting this as hard as he can.

The next step we wait for is the biopsy results. It takes at least 48 hours to get the results and since this happened on a Thursday, we will most likely have the results on Monday (Tuesday at the latest). Once we have the biopsy results, we can then be referred to the Moffitt Center and proceed with the next step. (Oh yeah, another angry moment – Stage 4 cancer and you still need a referral to go to a cancer center. WTF?) So after we get the biopsy results, we have a doctor’s appointment on Wednesday to get the referral. After that I have no idea what comes next. Sean and I always talk about “opening up the map”. We say it all the time while we are traveling. What does “opening up the map” mean? In video games, it’s the part of the game world that is greyed out because you haven’t explored it yet. You have to walk through it to see it on your game map. Opening up the map is an adventure for us when we travel. It’s not a scary thing, it’s just new. So we are applying that same “opening up the map” concept to this journey. Wednesday is the end of our current map and the rest is till greyed out. After Wednesday, we will have more of our map unlocked and we will keep moving forward down a new path.

Once the procedures were finished, we were told by the doctor that Sean could go home if he wanted. The doc said keep in mind you will not have the IV pain meds at home and also, I can only give you 3 days of pain meds because they are opioids. According to the doctor, Sean will get more pain meds from our referral doctor on Wednesday but she is only legally allowed to give out 3 days. The decision was totally on Sean. I was good either way (despite only sleeping in 90 minute chunks, I liked the small bed snuggling with Sean). So we did the math. Sean has pain pills for 3 days but has 6 days until the appointment. I looked at Sean and he said, “I’ll make it work. I want to go home.” There you go doc, pack us up and ship us out.

The pure happiness and joy I saw on Sean’s face when he got that news is something I never want to forget. It was like an energy was flowing through his hospital room. Adrenaline, mixed with hope, with a side of let’s do this.

We are now home and it’s nice to be home. (the kitties all pounced on Sean as soon as he walked through the door btw. So cute) We had some dinner and then snuggled on the couch. Besides the 3 gunshot wounds in Sean’s chest (that’s how he describes the chemo ports), everything feels “normal”. Watching TV, laughing at whatever was on, holding each other and of course having 4 cats walking all over us. It was nice to be home indeed.

Yesterday’s Goal: 75% Achieved! I didn’t manage to eat or drink anything until noon but after that I grabbed lunch and Sean and I had dinner together at the house. I am still really dehydrated but that won’t take long to get right. I was a little angry at myself this morning for needing this goal. I always thought to myself, how could you not eat? I love food (well candy mostly, haha). That would never be me. And yet there I was. But this goal will never be a goal again. One kick in the pants. I know I need all the strength I can save because Sean is going to need it.

Tomorrow through Wednesday’s Goal: Now that we are home, I don’t have a lot of goals in my head. I have a to-do list of things like forms to fill out, bills to pay, emails to answer but nothing other than normal day to day activities. I want to make sure Sean rests as much as possible. It’s going to be hard for him to take his pain meds because he is like that, haha. So there we go, I will make sure Sean takes his pain meds and knows he needs to rest as much as possible. (and hunny, if you are reading this, no I will not set up your computer work station tomorrow so you can work in bed 😘)

– Side note: I probably won’t have any more posts until Wednesday. Thank you for all the love, support and compassion. It’s just been Sean and I for so long and you have no idea how much it means to feel this huge big world hug around us. We are beyond grateful for all your messages, video messages, jokes, memes and everything else in between. From the bottom of my heart, thank you!