Day 173 – No One Fights Alone
It’s been 56 days since my last update and I wanted to write a catch up post about what has been going on the past few weeks.
First, I want to stop and say thank you to everyone, from around the entire world, for all the love, support and encouragement you give Sean and I everyday with your messages. When I created our t-shirt fundraiser with the slogan “No one fights alone”, I didn’t quite know how truthful that statement was. Cancer is an individual fight but an individual fights harder with an army behind them. You all are our army and we are forever thankful for each and every one of you. Your messages give us hope and renew our spirits daily. Thank you for being so awesome and caring for two people most of you have never met.
So what has been going on? Well, we are currently waiting for the 10th round of chemotherapy to start and I will say, they do not get easier. Really wish they did but so far each round seems to be worse and worse. I am guessing the severity comes from the fact that Sean’s body is dying as it is slowly poisoned. That’s what chemo does. It kills everything inside you. Good cells. Bad cells. Chemo drugs do not discriminate. You can only hope that you have enough good cells to keep you alive long enough to see the cancer cells die first. It’s a really thin wire we are walking on and it seems to get thinner with each chemo treatment.
First things first….THE CANCER CELLS ARE DYING!!! Everyone let out a great big YAHOOOO! This is the best news of all. (I will put a little chart at the end of this to document Sean’s progress with his cancer cells) In a nutshell, the tumors have either disappeared completely or continue to shrink and shrink and shrink. Medically this is the best news we could ask for. Our goal is to get the tumors down as small as we can, preferably gone, and then get Sean on a maintenance drug situation where he can live and function in normal life. We are not there yet but I am hopeful that day is coming closer and closer.
Okay, so yeah it’s really fantastic that the tumors are shrinking but goodness, the side effects… the side effects have been brutal. Absolutely brutal. It’s so hard to explain how it feels to watch the love of your life look like he is fading away. I tell myself over and over “The tumors are shrinking. The tumors are shrinking.” but it doesn’t give me any peace when I see Sean in a ball, sobbing on the bathroom floor. It’s so hard to stay positive but I know my positivity is the only thing he has to grab on to. Inside I am crumbling to pieces but outside I stay strong. I sit with him on the floor. I hold him while he is hanging over the toilet. I rub his back when he is hunched over in the bathtub. I do whatever I can to be there. I wish I could give more. I wish I could take the pain for just one day. I wish it got easier but it doesn’t.
With the notion of “No One Fights Alone”, I wanted to talk about the side effects so if you, or someone you know, is going through this…know you are not alone. Right now the current over-the-top terrible side effect that Sean is facing is non-stop diarrhea. The diarrhea is brutal and happens every hour. Sometimes he gets a break and he gets an extra hour thrown in there but usually it is every hour. With that in mind, sleep has been near impossible. Sean has to wear adult diapers just to leave the toilet for any amount of time. Traveling right now is very difficult. Even our two hour ride to Mayo is painful. And this brutal diarrhea has been going on now for 8 weeks. Let me put that into perspective – we have all had the stomach flu at some point in our lives. We know the feeling of needing to be within steps of a toilet but we know that in 8-24 hours that should be over. Now imagine Sean going on hour 1,344 because he has been dealing with this for the last 56 days.
To say that Sean is handling it well would be an understatement. He is handling this phenomenally. I cannot even begin to imagine the pain, shame and sheer torture this would be but he is doing it. How do I know he is doing it? We had a check-up appointment this week and all of his blood work tests came back perfect except one thing, his potassium levels were very low. Low potassium is a direct response to diarrhea but everything else was awesome. On paper, Sean was as healthy as can be. I was so proud of him. He has been constantly putting in as much as he has been losing. I never thought drinking fluids would be such a huge job but it is.
So what is causing this diarrhea? The doctors have no idea. At first they thought it was one of the chemo drugs called Irinotecan (eye-reno-teecan). Apparently this drug is jokingly referred to as “I-RUN-TOTHECAN” in med school. So to help with this, Sean’s irinotecan was reduced. That reduction happened 4 weeks ago so we all know that didn’t do anything.
Ok, plan B. Maybe Sean has this infection called Clostridium difficile (C-Diff for short). C-Diff is very common in hospital settings and for chemo patients. This little gem lives on toilet seats and is transferred as soon as you sit down (I bet none of you will sit on a hospital toilet again, lol). If the normal bacteria in your colon are compromised, say with chemo or even antibiotics, this little guy invades your colon and causes diarrhea (among other things). The doctors really thought this was the culprit so Sean provided a stool sample and that test came back negative. They were, and currently are, at a loss.
Sean and I have been trying to pin point when this all started, and it may be a coincidence, but this all started when they gave Sean a drug called Neulasta. Neulasta is administered to raise your blood cell counts, most importantly your white blood cells and your platelets. Basically it stimulates your bone marrow to create white blood cells. This drug may look great on paper but I am here to tell you, this drug is hell-on-earth in a syringe. (Before I go into the side effects from this, there is a notion that taking Claritin before the drug will help reduce the side effects. This does not work for everyone – you know the 1%. Sean would be the lucky winner of that 1%. He went through so much Claritin that he shouldn’t have allergies until 2030)
Ok, so what happened with this magic blood making drug? Hell. Hell happened. The things I witnessed, I will never forget. I can honestly say I know what pure torture looks like now and I know what it sounds like when someone is begging for death. I sat and watched Sean writhe in more pain than I ever thought possible. All I could do was rub his back to let him know I was there but it didn’t seem like enough. Watching him contort his body trying to get an ounce of pain relief, all I could think of was the numerous possession movies I have watched over the years. Those scenes where someone has their legs and arms crossed in unnatural positions, yep, that’s where Sean was at that moment. I did a little research and many people describe the feeling from Neulasta as every bone breaking in your body, ALL at one time. It was awful. It was soul crushing. It was hell.
Sean went through two rounds of Neulasta (just let that sink in for a moment. Reread the last paragraph and know we went through that twice). At the end of the second round is when the diarrhea came in with full force. Again, it may be a coincidence but it all happened at the same time. We do have an appointment with the GI team next week and I am praying with every fiber in my being that they can help. For Sean’s sanity, this has to stop.
But there is some good news with all of this (we try to find the positive in every hellacious chemo situation). This could possibly be the last side effect that we need to get under control before Sean is able to feel “normal” again. The docs have dialed in the chemo drugs to the perfect place that still kills the cancer cells and doesn’t drop his blood cell counts and the pain has been reduced to the lowest levels since this started (Sean doesn’t even need to take all of his pain meds anymore). Sean has reduced his tumors so much that if we were able to get this diarrhea in check, we are hoping Sean would be able to live almost like before cancer. Check out the chart below to see the progress of the his tumors so far.
As you can see, Sean is doing really well. We get the next CT scan in a week or so. We are hoping to see more of those rows changing to green here soon.
So that is the latest happenings with us. None of this has been easy but we keep pushing forward. (Just keep swimming. Just keep swimming) Pushing forward is the only way we know how to live. Sean and I have been through a lot together and this is just another feather in the cap. When I look at Sean I know he will beat this and I still see a future together. I know that future is always going to have cancer in it but that’s okay with me, as long as he is still here and not in pain. It’s going to be a long road but I am starting to see the light at the end of this very long tunnel.
Thank you for all your continued support. I cannot say it enough how much you all mean to us. Your love and compassion keeps us moving forward and for that we are truly thankful.