Day 78 – Hanging by a Thread
I have been struggling to write this update for sometime now. Struggling because the world is hurting. Hurting more than I ever thought possible. I write these updates through tears and my heart aches knowing that I am causing tears to flow from someone reading these posts.
So here’s what I am going to do with this update. I’m going to break this into two parts and I will let you decide which parts to read. If you are hurting right now, stick with the good. I feel like our mental well-being is hanging by a thread with the isolation we are living and good news is sometimes the best place to stay (if you haven’t seen SGN yet, do a search. You will cry the happiest tears as you watch all the good the world has to offer. It has seriously saved me from some of the worst days). If you feel compelled to continue to the sad, please know that I do not write with the intention of hurting anyone. I love you all. I wish I could hug everyone and tell you everything is going to be all right because it will be. The human spirit is strong and we will get through this dark time of COVID and come out stronger on the other side.
So this update is going to be like a choose your own adventure book (man, I really loved those books as a kid). I love you all!
The Good Stuff:
Sean’s cancer treatment is working! (Everyone at once….YAYYYY!) At this point we have been through four treatment cycles (that’s 60 days of chemo treatments) and each time the cancer markers drop more and more. Sean started this journey with his cancer markers at 29,741 and he is now down to 3,639. We are about to embark on treatment five and we are hopeful that the numbers will keep getting lower and lower.
Sean also had a CT scan (x-ray) on cycle four and we had some of the best news yet. Check out these numbers. Sean’s pancreas tumors decreased in size from 5 to 3.9, the lung tumors decreased 1.2 to 0.5, AND the best news of all, the liver tumors are GONE! (Again….YAYYYYYYY! You can do a dance if you want. I certainly did 😉)
We were so nervous for the CT scan but we were overjoyed with the results. I asked the doctor if the results were average or below average and he said Sean was above average in his treatment response. When he said those two words “above average”….well, I don’t think we have smiled that big in a very long time.
We went into treatment four with a little bounce in our step. It was the first time we felt like we had the possibility of beating this thing. A little spark of hope flowing through our body. A spark that has been missing since February 24th.
We head into cycle five tomorrow and I probably won’t be able to sleep tonight because I am so excited to see the new numbers. A feeling of hope mixed with a side of anticipation, belief and faith. I don’t know what tomorrow will bring but I do know that Sean and I will be there together. I hope our smile from cycle four grows even bigger when we get the numbers before we continue on to cycle five.
Now, here is your chance to close this page and think about the good that is happening with Sean. We are so thankful for each and every one of you. I know times are hard right now but things will get better. It won’t be today and it won’t be tomorrow but it will get better. You are stronger than you give yourself credit for. You can do this and WE can do this together. Stay safe, stay healthy and give someone you love a call. I know it’s not the same as a hug but you have no idea how awesome it will be for the person on the other side (and it’s good for you too 😊) ♥️
The Sad Stuff:
When we first got the news of Sean’s diagnosis, we received so many messages. Amazing messages from all over the world. Messages about hope. Messages about strength. Messages about the fight.
Fight. It’s funny how a five letter word can sum up cancer so well. A word that describes the physical battle, the mental battle and the battle to not lose yourself in all the pain.
These past weeks have been really tough. The pain that Sean goes through rips the soul right out of my body. His anguish is unbearable and there is nothing I can do except sit there, rub his back and hold him while he cries.
Even with the aid of pain medications, the pain is intense and constant. Sean describes the pain like someone is descaling a fish inside his abdomen. It’s a bit graphic but it describes what is happening perfectly. The cancer cells are being stripped from Sean’s organs. Which, don’t get me wrong, is a great thing. I just wish it didn’t come with so much physical pain.
As I mentioned earlier, we are wrapping up on cycle four today (tomorrow we make the journey back to Mayo to start round five). This round actually started out pretty awesome. We had the best news from the numbers and the CT scan and Sean handled the treatment better this round than any other previous round. The doctor ordered atropine to be included to help with Sean’s negative reaction to the last drugs and it worked. Sean made it through to the end and was doing great. We strapped on his chemo pump and away we went.
We decided to come home after the treatment instead of spending the next 48 hours in a hotel room. We had some issues with cleanliness the last time we stayed in Jacksonville so I thought it was better to come home and not stress about COVID. It was the BEST decision ever. Not only did Sean have a great infusion, he was now able to rest and relax in his own home. And not just him, I was able to relax as well. I didn’t have to stress about – Did I clean that light switch good enough? Did I forget to clean that surface? Did I remember to pack the heating pads? Did I remember to pack the toilet seat cover? (this list goes on and on). I didn’t realize how much stress went into staying in Jacksonville for just two nights and it was nice to be safe in our home.
The next 48 hours went by smoothly. Sean was eating for the first time during a treatment, his pain was low and even though there was a radiation pump attached to his body, we felt like we were kings of the world. Any day where Sean is eating and laughing is a good day but during chemo treatment that good day changes to the most badass great day!
We drove back to Mayo on Friday, had the pump removed and back home we went. It was the best infusion yet. At this point we thought that maybe the worst was behind us. Could we have possibly made it over the hump and it’s now easy peasy from here on out?
[Insert the sound from the big red X being pushed in America’s Got Talent mixed with the sound of a creepy jack-in-the-box laughing at us]
Day three was the end of “happy” cancer days. From there things took a dive for the worse. The pain came back full force. The vomiting came back stronger than ever before. It felt like Sean’s quality of life went from an eight to a negative five in about two seconds.
I couldn’t stop crying thinking about how things went from such a high to such a low, in such a short amount of time. But that has been this ride. A series of ups and downs. Twists and turns. And all in the dark. You never know where the next piece of track is going to take you.
The sheer feeling of hopelessness washed over our home this past two weeks and it has been hard. I know the isolation is getting to me too. I broke down the other day…no, more like a psychotic break…I couldn’t stop shaking or crying because I kept thinking that this world was a dream. It had to be a dream because I haven’t talked to anyone physical in so long. Sean must be dead and I have to be sitting in the corner of a padded cell, in a psychiatric ward somewhere.
As I sat on the sofa listening to Sean throw up for the hundredth time, I kept looking around saying this isn’t real, this isn’t real, this isn’t real. Old memories would pop in my head and Sean’s image would just blow away right in front of me. I was trying my best to reach out and hold on to Sean as he was blowing away but he went right through my fingers…I was losing my mind.
(I sat there crying uncontrollably and then I felt this arm wrap around me and it was Sean. He was still there. He wrapped me in a blanket and sat there holding me until I stopped shaking.)
I never knew the mental impact this would have on us. Cancer already isolates you in itself but throw in social distancing and well, that’s just adding salt to the wound. It’s been hard this week. Really, really hard.
I also see the pain on Sean’s face as well. It’s hard to watch him look at himself in the mirror and not recognize who he is. He has lost so much weight (he is 166 lbs now). He is nothing but skin and bones and he doesn’t like what he sees. I assure him that we will work on the body portion after we get through the cancer but it doesn’t help the person that he looks at now. It’s just another constant reminder of this awful disease. It attacks everything. Your mind, body and spirit.
But through all this we push on. We push on because we know there are better days ahead. We even got a glimpse of better days by having the opportunity to work on a project for work. It was a short 3-day project but it was a nice distraction that helped us see that there is a world out there that we both belong in. A world that we have to keep fighting for. This fight has taken us to our knees but we will not give up. Through the pain, through the anguish, through it all, we will keep pushing forward with everything that we have.
I am writing this through tears so I know it is sad. I am sorry for the sadness. I wish I could take it all away for everyone. I am going to end this section just like I did the first –
I know times are hard right now but things will get better. It won’t be today and it won’t be tomorrow but it will get better. You are stronger than you give yourself credit for. You can do this and WE can do this together. Stay safe, stay healthy and give someone you love a call. I know it’s not the same as a hug but you have no idea how awesome it will be for the person on the other side (and it’s good for you too 😊) We love you all! ♥️