One Year...

One year ago today...
the day it all changed.

It was a Tuesday. I got the call from Matt around 3:00. I remember I was sitting at the computer at home. Matt told me that he was at the hospital, and that Bob Scott, his boss, had driven him there. Then he said those 4 words I never expected to hear: “The tumor came back.” 

My heart stopped.

Matt had gone in that morning for an MRI, as he has done numerous times in the past 10 years. He was now at the point where he had an MRI just yearly now, and that one was done in February, which showed that everything was fine. There was no sign of tumor growth, which had been the case for the last 10 years, praise God. But because Matt had been having some seizure activity for the last few months, they suggested he go in for another MRI in July. We then decided we should move up the appointment, because he had been having a headache every day for the past week. Good thing we did....

After I hung up with Matt,  I immediately broke down. I think after that I was in somewhat of a state of shock. I went about what I was doing and ate lunch, and then I realized I needed to get to the hospital! Things are somewhat of a blur after that.... I remember being in the ER room with Matt and Bob and Bob praying for us before he left. I remember being moved to the neurology floor, I think, but first they had us wait in some small private room while they were getting a room ready. That’s when Andrew, a physician’s assistant to the brain surgeon, came in to talk with us about what was seen on the MRI. 

Andrew explained what they saw, and while we didn’t know for sure what it all meant, we knew by his demeanor that it wasn’t good. At that point, Matt and I were both in tears. Andrew then asked if he could pray for us, and we said yes, of course. That moment was so special and meant so much to us. I have never had a PA or a  nurse or doctor pray with me before. It was just another indicator that God was there with us, through every second of this. 

Later that evening, Dr. Yao, the brain surgeon, came to our room to discuss things more with us and give us our options. He explained that the tumor was of significant size and that he was shocked at how fast it had grown in the 4 months since Matt's February MRI. He said that without doing surgery, they couldn't say for sure what type of tumor or grade it was, but he did mention glioblastoma. that was the first time I had ever heard that word. In his words, that was the "worst case" scenario. If it was GBM, and Matt chose not to have surgery or chemotherapy, he would only have about a month to live. Then he said that even with surgery and treatment, it's usually about 6 months. 

6 months....that’s something you never want to hear. Those words echoed in my head daily after that. 6 months. 6 months. 6 months.

Pretty much right away we decided on doing the surgery to remove as much of the tumor as possible. The surgery took place 2 days later, on June 29th, and lasted about 9 hours. Matt's parents and brother flew in from New York. The waiting was excruciating.

After the surgery, at about 9 pm, Dr. Yao came out and said that it went very well and that he was able to remove about 90% of the tumor. Matt stayed in the hospital for a couple of days after that and then was able to go home on Saturday. Of course, the day after his surgery, Matt was already joking around with the therapists and nurses and was in good spirits. And was already talking about when he could have pizza next!

After that, it was just a waiting game to get the results back to confirm what type of tumor it was. I prayed and prayed that it would not be GBM, but about a week later we found out that it was. Grade 4 Glioblastoma. That was an extremely emotional day for us. As is to be expected when  you hear something like this, we had our moment of crying with each other. I remember standing in the kitchen, in his arms, me crying and him crying, and me saying that I couldn't lose him, I couldn't live without him.

But after that day, we focused on the next step: the treatment plan, what we were going to do to fight this thing. In the beginning I was scared, and I sometimes found myself fearing the worst....but then I realized that I could not have that mindset and dwell on the negative. So I immediately turned to God and clung to scriptures. I asked God to renew my mind and change my thinking and to open my eyes to what He was using this for and how He wanted to use me through this, for His glory. I decided from that moment on, to not think too far ahead, but instead, to take things one day at a time and to cherish each and every moment, to see the good in every day. I decided to trust and have faith. 

Matt was up walking around the neighborhood and back in the gym less than a week after his surgery. We floated in the pool, went out to eat, played putt-putt, went out for ice cream...just enjoyed life. At the same time, we were considering our treatment options. The typical protocol for GBM is chemotherapy and radiation, but after getting a few second opinions, we decided to pass on the radiation and just start with the oral chemotherapy. Matt also decided to do the keto diet, and we also started researching supplements that could help. We figured if it won’t hurt, then why not? So he was on turmeric, DHA, and Boswellic acid, among other things. 

Later in August, Matt started using the Optune device, which was showing some promise in helping people with GBM live longer. It was annoying, but just like with the diet and supplements, we were willing to try anything. Unfortunately, Matt was only able to do a couple of months with the Optune until he developed a rash that would last for days every time we put it on. So we and the doctor made the decision to stop that treatment. Matt continued with the keto diet and the oral chemotherapy up until December. At that point, his neuro-oncologist decided to switch from the oral chemo, to infusions of Avastin, which would be administered intravenously every 2 weeks. 

We took at trip to New York to visit  his family in Steptember, and I’m really glad we did, because things started declining not long after. See, at the same time as all of this was going on with the tumor and the treatments, Matt’s Parkinsonism was getting worse as well. He began losing his balance, falling more often, and having a harder time walking and using his hands for things. It was hard to distinguish what was the Parkinson stuff and what was the tumor growth, and even the doctors couldn’t really say. 

I know that those things really got to him, and he was frustrated and discouraged that he couldn’t do things he once could,even right after his surgery. Everything he did required so much thought and effort that walks weren't even enjoyable anymore, because he had to think about how to move his feet and swing his arms. We’d go out to eat at a restaurant, and I had to watch him struggle to cut his steak. I hated watching him have to go through that. I know that it was wearing on him mentally. He wasn’t working at the gym at this point, but he was still driving and training his wrestling class at OVW, which I know really helped him and made him feel like he still had purpose. But eventually when Matt could no longer walk, he was unable to continue teaching the class. 

Then Matt ended up getting the flu in the middle of December. At that point, he had been using a walker for a few weeks, but after being at the hospital for a few days with the flu, he was wheelchair bound and really never walked again. It got to the point where Matt’s parents came down in December and then just basically moved in with us. Matt needed 24/7 care and was really unable to do much for himself from then on. I will admit, that was a hard few months, adjusting to being his caretaker, moreso than his wife. We had to move Matt from bed, to chair, to recliner, to bathroom. It was physically exhausting at times. But I’m so thankful for his parents being here to help. It made things so much easier. 

We did try physical therapy and even went to Frazier rehab for inpatient therapy in February for 2 weeks in hope that he would be able to walk again...but the results from that were minimal. Things just slowly kept getting worse. During this time, Matt was having a harder time talking and the left side of his face no longer moved. He started doing a thumbs up or down for yes or no. Eventually he stopped talking completely, besides the occasional “yeah” when we asked him a question. He was also having a harder time chewing and swallowing, so he started eating less and less, which of course led to weight loss. It has been really hard watching my big, strong, outgoing, funny, full of life husband just slowly wither away....

Throughout all of this, Matt and I really never discussed death. A part of me wishes that we had, but I just never wanted to make him think that I didn’t think he would make it. Because I still had hope, and I didn't want him to give up hope. And maybe he felt the same way and was afraid to talk about it with me. We were both probably trying to watch out for each other. I didn’t realize that at some point he would lose the ability to talk, and I’m sure he didn’t either, so I do wish there were things we had talked about before that happened. 

He didn’t open up to me too much about how he felt about all this, besides his frustrations about the things he couldn’t do anymore. I feel like he probably held so much inside because he didn’t want to worry me. When he was still able to talk some, he did express to me that he was a little worried and scared the day we talked with the doctor about the tumor growing and causing increased swelling back in March. I think that was the point when the doctor recommended radiation, which Matt wasn’t too thrilled about. We did finally decide to do it, since we didn’t seem to have any other options at that point....And I know that like me, Matt wanted to know that we tried everything we could. 

At the end of April, after talking with Dr. Larocca about Matt’s continual decline, he told us he thought we were at the point where we should stop treatment and that Matt probably only had a few weeks left. He finished the radiation treatments, but no more chemo. That was almost 2 months ago.

There are some days every now and then when Matt is more alert and tries to talk, but we can’t understand what he says, which is super frustrating. I can’t imagine how that must feel to want to communicate but not being able to. Then there are some days when we can’t even get a hand squeeze or a wink in response to our questions. But I know that he’s definitely still aware and understanding of everything that is going on. 

He does often stare off to the right lately for some reason. The smiles I get now are few and far between, but I do still get them occasionally. I try to make him laugh but don't usually succeed anymore. I always tell him that I know he's laughing on the inside! Either that, or he's like, please get this crazy girl out of my face! We have him on Ativan for seizures and anxiety, which seems to help keep him calm and peaceful. He hasn’t had solid food in weeks, but I am able to  get in a protein shake with whole milk and lots of peanut butter. He's just skin and bones now... Just the other day I looked at him when I was taking his shirt off, and it made me tear up because he’s starting to look like a skeleton.

We ended up getting hospice care at the house about a month ago, which has been helpful. Our main concern now is keeping him comfortable and pain free. Thankfully, so far he hasn’t had any pain,which I've read is common with brain cancer. For that, I'm thankful. I just hope that mentally he is still in a good place. That’s all I pray for now. I read the Bible and pray with Him, and remind him (and myself) that this life is so short compared to eternity and that one day we’ll look back and this will all just be like a blink, just a speck, in the broad scheme of things, in light of eternity. One day we’ll be with Jesus and live in pure joy for an eternity and all of these struggles will have seemed like nothing. It sure doesn't feel like that now... but I believe.

I just love this man so freaking much. He’s my “person”. He’s the one I wanted to be with forever. He's the one I wanted to grow old with. I wanted him to be my whole life, not just a part of my life. So many times I’ve wished that it were me going through this. I would trade places with him in an instant. I always told him that I wanted to die before him because I just didn’t think I could survive without him, but I knew that he’d be okay without me. If you would’ve asked what my worst nightmare was, it would be losing him. So many times I’ve asked myself, how can this be happening? I can’t believe this is really happening. But it is. And this is part of life. People get cancer and people die. We can’t do anything about that, but we can control how we respond to these circumstances and how we allow God to work in us and through us. I can already see the growth and change in me. 

All I want, and all I know Matt wants people to see and to learn from our journey, is the goodness and grace of God. We want it to help people to trust and cling to their faith in Jesus, no matter what trials they may face in life. Because we will all face them eventually. If just one person gives their life to Jesus through this, then it was worth it. 

I’ve already had numerous people message me saying that they never pray, but that they’re praying for us, or people who have told me that we are inspiring them in their relationship and walk with God. That means SO much and makes this somewhat bearable. I know it has to make Matt feel good to know that he has impacted so many people, that he has walked the walk and been a witness and set a good example for the Lord, as we are all called to do as Christians. It sucks to go through something like this, but I know God is working and moving. All the both of us want is for Him to be glorified. As Jesus said in John 12: 28, Father, bring glory to Your name.