Top
  >  Daily Journals   >  Day 2 – This Is Our Fight Song

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!

Comments:

  • Melanie Steelman

    February 28, 2020

    Still praying so hard. Like its my full time job!

    reply...
  • Jen

    February 28, 2020

    Praying every day. A few days at home to decompress.. I hope you can. ❤️

    reply...
  • Sherla

    February 28, 2020

    You guys are on the top of my daily prayer list and will stay there. Be strong, cling to each other and let God have control

    reply...
  • Michelle

    February 28, 2020

    You are both an inspiration the way you love each other and live life, now to fight the biggest battle you’ve ever faced… there’s no doubt in my mind Sean is going to kick cancers ass!!! Keep fighting!! Prayers and hugs sent your way!!

    reply...
  • Susan Diekmann

    February 28, 2020

    Long-distance hugs, along with many prayers to you both! I’m sure the “normal” day-to-day feels so good right now. Keep up that strength, and always know how many FAMILY members you have out here in the world!

    reply...
  • Marilyn &Frank Resto

    February 28, 2020

    Thank you for keeping us updated, we will always have you both in our thought and prayers daily. Fight the fight! We are here for you! Love you guys! #SeanandStefStrong

    reply...
  • February 28, 2020

    Much love to you both. Prayers are continuing.
    John 16:33 I have told you these things, so that in Me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.

    reply...
  • Ken

    February 28, 2020

    And this is exactly how you handle this. I admire both of you. You have our prayers and support. Maybe we could put together some “ship snacks” for when you do not eat Stef :).

    reply...
  • John-James Worrall

    February 28, 2020

    Always stronger together. Keep each others spirits up. You have a lot of people wishing you all the best, maybe more than you ever thought. Keep smiling and stay strong.

    reply...
  • February 28, 2020

    Praying for you both

    reply...
  • Lois Brody

    February 28, 2020

    Glad you can relax at home in each other’s arms with some privacy….and kitties! “ Just keep swimming!”
    Sending warm hugs to both of you.

    reply...
  • Theresa Paiano

    February 28, 2020

    Praying for you guys everyday.🙏🏻🙏🏻🙏🏻

    reply...
  • February 28, 2020

    You both are an amazing couple who has such a positive impact on others. My heart aches for the both of you. Many prayers and (((hugs))).

    reply...
  • Roy

    February 28, 2020

    Glad you home. Stay strong, we all love you guys!

    reply...
  • Ally Berens

    February 28, 2020

    You two are in my prayers and thoughts. Love to you both.

    reply...
  • Brian and Danyl Hutchens

    February 28, 2020

    So glad you both are home! Both of you please rest! Turn on the white noise machine and relax! We are all pulling for you!

    Brian and Danyl

    reply...
  • Deb Griffin

    February 28, 2020

    I completely understand the frustration with time. My husband was diagnosed with an aggressive form of prostate cancer. The docs gave no other choice but removal surgery because of the aggressive nature of it, they didn’t want it spreading. I literally wanted it out that day! We’re also young in age, I’m only in my 40’s and this was not something we ever expected. His surgery was scheduled like two months later and I couldn’t understand why this wasn’t being treated more urgently and it was so frustrating and such a helpless feeling. Your aggravation is validated…time is so important. I just wanted to say I totally get it and you are not alone. So glad you are home together now and you and the kitties can give him lots of tlc. Praying for you!!!

    reply...
  • February 28, 2020

    You guys are the coolest. Keeping you in my prayers 💜💜💜

    reply...
  • Scott ONeal

    February 28, 2020

    You guys are warriors! Your love for each, the love that you both put into what you do, and the love that pours out in your writing is truly a blessing to those that see it! Thank you for being IRK cause that’s what this is!

    reply...
  • Elisa

    February 28, 2020

    After you get your referral you will get an oncologist who will come up with a treatment plan for Sean. I think our kitties know when we need them most. My daughter has anxiety and her cat acts like a support kitty for her. You have an army of people praying for you. You both are so strong and 100% committed to this fight. Cancer is going to regret meeting Sean, it picked the wrong dude.

    reply...
  • Colleen Duffy

    February 28, 2020

    Love your strength and love for each other! If anyone can beat this, it is the two of you! You were an inspiration before and even more so now! Sending continued prayers and positive thoughts!

    reply...
  • Candace

    February 28, 2020

    This comment is directed to the wonderful, caring, loving cruise family who totally support and pray for Sean and Stef. Through their tireless work they have shown us the ends and outs of cruising. Their videos have answered our endless questions. I am wondering if we can’t do the same for Sean and Stef?

    For example, is there one of us who lives in Tampa and works at the Moffitt Cancer Center? A friendly face can mean the world to Sean and Stef when they arrive next week? Is there someone who could research accommodations for Stef if there are overnight stays involved? Perhaps a small eatery near the hospital to grab a quick bite to eat?

    This is “us” switching roles with Sean and Stef to provide them with knowledge and suggestions which they have provided all of us through their videos and journals. I’m sure all of you get the idea I’m putting out here. Let’s put on our thinking caps and come up with ways we can repay Sean and Stef for all they have done for us!!!

    And don’t stop the prayers 🙏🙏

    reply...
  • Dianne Marshall

    February 28, 2020

    So sorry to hear what you are going through… prayers being sent for continuing strength.

    reply...
  • Tracy

    February 28, 2020

    Y’all are in my prayers, hang in there and enjoy every moment together. Much love from Colorado.

    reply...
  • MYRTLE

    February 28, 2020

    STILL PRAYING FOR BOTH OF YOU

    reply...
  • Gary Bembridge

    February 28, 2020

    Lots of love. Think about you both often. Appreciate these updates. XXXX

    reply...
  • Christine

    February 28, 2020

    Love and hugs to you both 💜 xxx

    reply...
  • Debbie Lasowitz

    February 28, 2020

    You are both in our thoughts and in our prayers 🙏🏻🙏🏻🙏🏻❤️❤️❤️

    reply...
  • Bonita Beeman

    February 28, 2020

    God works in mysterious ways. I am evidence of a miracle. When I was born my parents were told I had hydrocephalus (water on the brain). They were told I will no go home and for them to make final arrangement for me. My dad heard Jesus talk to him and told him to build an altar so my father went to the little creek by our house and started pulling rocks out and he built that altar He laid his head on the altar and prayed “God if it is your will make my baby girl whole.”
    I just turned 66 and I am whole… things happen for a reason for reasons we will never know. I do know there may be a reason I found your channel to testify of my full healing and miracles do happen. Dear Jesus if it is your will Please take the cancer from Sean and make him whole again. Amen..

    reply...
  • Kristal Sims

    February 28, 2020

    Continuing Praying for you both!!

    reply...
  • Michele Shaddix

    February 28, 2020

    Please rest and eat often. You will lose weight with treatment, give your body the energy it will need. Eating will not come easily later. Still sending prayers for both of you.

    reply...
  • Nurse Nancy

    February 28, 2020

    You are doing so great! Keep hanging in there!! Be angry at the nasty cancer! Try not to take it out on the doctors…they have it pretty tough with all the regulations nowadays. Still sending you both hugs and lifting you up in prayer. I’m so happy you are home! ❤️🤗

    reply...
  • Duke

    February 28, 2020

    Thank you for all the smiles you brought with your vlogs. I will be praying for you daily. But remember this, every morning you still need “A hearty breakfast”!!

    reply...
  • Kit Schroeder

    February 28, 2020

    Space out the pain meds. Alternate between that and high mg doses of Tylenol, if allowed. I did that after my surgery to make them last longer. I’m so sorry this is happening. We are all so sorry this is happening.

    reply...
  • Mandy

    February 28, 2020

    Sending hugs, love, prayers and positive vibes to you both x x

    reply...
  • Tony Incoll

    February 28, 2020

    Make everyday count mate!
    Fight that bastard like your the heavyweight champion of the world!
    We are all here for you both.
    Love and prayers always!

    reply...
  • Susan

    February 28, 2020

    Sending you all the love and support I can you guys are amazing and you can get through this!!! Prove the Doctors wrong Sean you are a fighter and the fact you have a partner you will fight together!!!!! ❤️❤️❤️🙏❤️🙏❤️❤️🙏❤️❤️❤️

    reply...
  • Haley Hesson

    February 28, 2020

    Being home is like a pain med and an antidepressant in itself. Enjoy each other and the kitties!

    reply...
  • Shirley

    February 28, 2020

    You are both beyond strong and it really shows. Those kitty’s want to share their love too, so let them sit on him and let the ❤️ flow through. Now go drink that water😂😂

    reply...
  • Angela Norton

    February 29, 2020

    Praying for you.

    reply...
  • Susan

    February 29, 2020

    ❤️🙏🏻❤️🙏🏻❤️🙏🏻

    reply...
  • Tammy Johnson

    February 29, 2020

    Sean and Stef, You both are in my thoughts and prayers. God please put your arms around Sean and give the strength to fight this horrible disease. In Gods name I pray AMEN

    reply...
  • Lisa

    February 29, 2020

    We so appreciate your updates, Stef as you are in our thoughts every day. So glad Sean is now home with you as there’s nothing like your own bed and surroundings. We continue to pray hard for you both.

    reply...
  • Jennifer

    February 29, 2020

    We love y’all and will be praying with everyone else…..Jennifer Accaira

    reply...
  • Lisa Wise

    February 29, 2020

    You guys aren in my prayers every day. So happy that you guys are at home.

    reply...
  • LaShuntay

    March 1, 2020

    Me and my family have been praying for you both!! I believe The 💕 of your life WILL beat cancer!! I need for you to eat and keep yourself dehydrated. If God healed my husband after his stroke in 2017…God can heal Sean from Cancer. Continuing 🙏🏾 for you both.. The Stevens Family

    reply...
  • Hudson

    March 4, 2020

    Love and blessings 🥰🙏 I will be praying for Sean and for both of you ❣️ everything is possible with Love ❤️ xxooxxoo

    reply...
  • Mark James

    March 6, 2020

    Terrible terrible news. If anyone can pull thru its Sean. Realistically the odds are very slim but Sean is a fighter!

    reply...
  • March 7, 2020

    Calling all you YouTube cruising video viewers – folks, come on, open up your hearts. Just $5 from each one of you will see them through. Donate now, please, thanks.

    reply...

post a comment