Day 26-36 – Grasping To Hope
As we sit here getting ready for chemo round two, I wanted to reflect on the past week. This wasn’t a great week and I wanted to take a second to write down what happened so we can look back and go, oh ok, this happened on that day and this happened on that day. I took short notes throughout the week to chronicle the side effects, emotions and everything else in between.
Cycle Day 3 (Friday) – We had Sean’s pump removed and started the 2 hour journey back to Orlando. Sean was having some anxiety so they gave him some more meds before we left Mayo. Because of the meds, Sean was out the entire trip back to Orlando. It was so nice to see him rest and be relatively pain free. That is the one thing I have cherished so far, pain relief. With pain relief comes less anxiety. With less anxiety comes sleep. With sleep comes healing. Sleep and rest is something Sean has always struggled with and to see him sleeping now in the car, well, it’s heavenly.
Cycle Day 4 & 5 (Saturday & Sunday) – Today Sean is doing ok. He is extremely tired still which is great. For me today, I crashed hard. All of my adrenaline has been completely depleted. I had nothing left. Thank goodness Sean was sleeping as well because I was out. I don’t remember how much I slept in total but I think I only ate 2 meals the entire weekend. The rest of the time I was in bed passed out.
When I finally woke from my 48 hour sleep-a-thon, I was amazed at how the body will shut down after being pushed to the limit. The thing that kept popping in my head was “The Walking Dead” show. I kept thinking, there is no way people could go that long fighting zombies and not pass out from exhaustion (Seriously. Everyone should be dead in that show, just saying 😉) I knew this fight was going to be hard but I didn’t realize the toll it would take on my body, mind and spirit. This is the hardest thing I have ever been through. I can only imagine how hard this is for Sean.
Cycle Day 6 (Monday) – Today was extremely rough. The meds Sean was given at Mayo are completely gone now and he is relying strictly on the oral meds to provide all the relief he needs. The meds are working ok but last night, Sean vomitted through the night (With the vomiting comes extreme back pain, on top of the abdomenal pain. Its a rough cycle once the pain starts and getting that reeled back in is a difficult task).
The vomiting continued on and off all morning. Seeing Sean sit weeping was the hardest thing ever. All I could do was hold him while he rocked back and forth and it didn’t seem like enough. At that moment, I would have given anything to take some of the pain away. It’s so hard seeing the person you love more than anything in this world going through something that you can’t fix.
Cycle Day 7 (Tuesday) – if I thought things were rough yesterday, they got worse today. We were told that things would be the worst about day 7-8 and they were right. The pain is the worst and we are the worst at making sure Sean takes the pain medication on schedule. It’s been a learning experience for us both. In the past when we have been given pain meds, you take them when you need them and no big deal. Well with this, you HAVE to take the meds every 4 hours no matter what. If you wait until you need them, the pain is so unbearable and lasts too long before the pain meds kick in. The pain meds are accumulated in Sean’s system and we need to make sure there is always something there. We are working on getting better at this. One of the hardest parts about the pain meds is that Sean has to eat before he takes them. His stomach is very sensitive to meds and vitamins. The hard part comes because first there is the nausea and second there is the insulin. So Sean has to fight through the nausea, check his blood sugar, take insulin, eat something and THEN he can finally take the meds. It’s a vicious cycle but we are determined to get this thing right.
These last two days have been really hard for me. I have found myself slipping into a darkness. I was getting more and more depressed and withdrawn. The feelings of absolute nothingness kept washing over me. I felt like I wasn’t able to do anything right. I wasn’t keeping up on the pain med schedule. I couldn’t find food that didn’t make Sean vomit. It was overwhelming and I was getting sucked into darkness farther and farther.
It was a scary feeling. I am not a depressed kind of person. I went through some depression with our infertility journey but nothing like this. That feeling of being absolutely powerless is something that I wouldn’t wish on my worst enemy. Day 7 absolutely sucked!
Cycle Day 8 (Wednesday) – today Sean had to get blood work done for the clinical study. This will be part of our 2 week routine. The blood work was fairly uneventful (well except for the fact that the blood work place lost the paperwork from Mayo and had me freaking out because I thought Sean was going to get kicked out of the study. I think I called a hundred people in order to get things straightened out). We have been doing better with the pain meds. We are slowly getting into a rhythm with that, which is wonderful. Sean was better today. He still weeps because this whole thing just stinks but he is managing to be in better spirits. He is back at the computer editing and trying to keep me in a positive headspace.
I honestly didn’t think this was going to be so hard. I knew it was going to be a fight for Sean. I knew he would have good days and bad. At the beginning I thought, I got this. I’m super positive. I can handle anything. Well those things may be true but this is something that I have never experienced before. This is a sadness that I have never experienced before. This is a hopelessness that I have never experienced before. This is truly a battle on all sides.
Cycle Day 9 (Thursday) – today was a great day. It didn’t start out great but it definitely ended greater than great. I have been having a rough couple of days. It’s easy to tell yourself to be happy but when you see the love of your life writhing in pain, it’s hard to keep those positive thoughts in the forefront of your brain.
But Sean said this morning, “Let’s go live today!”. I looked at him and was like “Really? Today?”. He said “Yep today it is. Hop in the shower and get ready. I will fix up the office so we can live stream from the computer” (our live studio isn’t quite ready yet). I didn’t have the strength to argue so I hopped in the shower and got ready. I helped Sean get everything set up and we went live on YouTube. I have to say, it was the best thing that has happened in the past week. It was so awesome to laugh, tell stories and just smile. It was like all the darkness lifted in one swoop and there was nothing but light and love. If you watch the live stream, you can really see the difference in Sean as the broadcast went on. It was amazing. There was a new spirit flowing through us. The spirit of hope was back and we were ready to fight again.
Cycle Day 10 (Friday) – Yesterday was a great day. Truly a great day. Thank you to everyone who chatted with us. For Sean, today we reached out to the docs at Mayo to tell them the symptoms Sean has been experiencing (they have this really awesome patient portal where you can send messages to the doctors). We got a response back immediately that they were going to send in some new meds to help with the nausea and anxiety. That was so awesome. We have always been weary of asking for help from doctors. They either act like you are a drug addict looking for another fix or they aren’t willing to help because they don’t care (yeah we haven’t had the best medical history, haha). We put off telling the Mayo doctors anything because we were going to “grin and bear it”. We were so happy that the Mayo team was like “no way, you don’t need to be suffering”. That was awesome and a new experience for us in the medical world. We picked up the new meds and I can’t wait for Sean to start feeling the effects.
Other than the new drugs, which was a huge win, today was a better day than the beginning of the week. Sean and I talked a lot today about everything that has been going on. One thing that we both realized – life is too short to have full bad days. We can have bad moments in a day but we need to talk to each other and bring each other back to a good place in that same day. I spent the beginning of the week in bed or laying on the sofa under a blanket. Sean put it very bluntly “We don’t have the luxury of giving up hours with each other. We need to cherish each moment that we have. This may be the only ones we get.” He is absolutely right and from today on, I will try to change those bad “days” into bad “minutes”. I will try to find the good and rise up out of that darkness and back into the light with Sean.
Cycle Day 11 & 12 (Saturday & Sunday) – this weekend has been great. Sean and I both worked on stuff that needed to get finished. Work stuff. YouTube stuff. Paperwork stuff. It was a very productive weekend.
We are starting to get the pain meds under control and get into a schedule. So far that has been working ok for Sean. The pain meds take him from a 10 to a 7 and that’s better than it was at the beginning of this cycle. The anti-nausea meds are doing better too. Sean is still vomiting but not as often. We have found a few foods that he has a complete aversion to (spaghetti sauce is a no go and that includes pizza. Found that out the hard way) and we have found foods that he can eat a lot of (eggs and French toast are staples right now at our house). I will fix anything if it doesn’t come back up. Want some french toast? Just come to our house. It’s always on the menu 😉
Cycle Day 13 (Monday) – The days are getting better but the thought of chemo round two is starting to creep in. It feels like everything is getting back to normal and then we get to start this whole cycle again. The scary part now doesn’t come from the unknown, it comes from the known. Now we know exactly what happens during chemo and we know what happens during the days that follow.
One thing cool that we did today – we learned how to make fresh juice. Sean has been craving vitamin c and I have been reading about the awesome effect juice can have during chemo. So we had a little juice theater on our Instagram stories and we made juice. We made orange-carrot-ginger juice and it was delicious. I can’t wait to make more juice recipes. Sean and I had such a fun night making juice. We probably had more fun than we should but it was a moment that I will never forget. Fruit poop for the win!
Cycle Day 14 (Tuesday) – this is it. The day before we head back to Mayo and start chemo cycle two. Today was an ok day. We are getting better with the pain meds. We still miss that 4 hour mark every now and again but we are getting better. The ok part of the day was the knowledge that we will be heading back to Mayo tomorrow. This may sound awful but we don’t want to go back. We don’t want to do this cycle again. We don’t want to do any of this anymore. Of course this is not reality. We are going back and we will soldier on. This is just the feelings that Sean and I have been talking about today. Knowing what is in store for the next two weeks doesn’t inspire us, it makes us cry. We now know exactly how hard it will be and those are some tough thoughts to squash.
Final Thoughts – We will head to Mayo tomorrow with our heads held as high as we can get them. We will throw our shoulders back and tackle another 14 days together. Tomorrow is going to suck. Well now we know Day 1-7 is going to suck really bad BUT the one thing we do know is day 8-14, those days are going to be better than the others and that gives us something to hope for. All we have right now is hope and we will grasp on to each piece of hope as tight as we can.
Watch out Mayo, the Mullen’s will see you tomorrow 💜