Morale Boost +9

It’s no secret the past eight months have not been easy for our family. Those of you who follow our story have gotten a glimpse into the hardships and twists and turns this cancer journey has given us. But it hasn’t been all bad. This time, I get to share some joy with all of you.

About two weeks ago, Corey, Michelle, and I had all been eagerly awaiting for Corey’s blood counts to come up so we could all go home from the hospital. We were in Tennessee from January 2nd until the 12th. We were transported from hospital to hospital, landing in Moffitt for the remainder of our stay. Corey and I had not seen home in two weeks. Each day at the hospital felt never-ending, and soon they all ran together.

Thursday, January 18th we were finally discharged. The relief we felt to be back within our own comfort zone was immeasurable. Of course, we were all exhausted. The rest of the day Corey and I spent in our room vegging out to TV shows.

Little did we know, we had something waiting for us. Rather someone. Many someones.

At midnight the same day, we come out of our room and three familiar faces were smiling at us. Jason (called Jay), Aaron (dubbed Shaff), and Wesley were standing there with big smiles on their faces. They live in New Mexico and Oklahoma. What in the world were they doing in St. Petersburg, Florida?! Surprise numbers one, two, and three.

Corey met these guys almost eight years ago playing Xbox live. Since then, they have played countless hours of tag-teamed, winner-take-all, beat down matches against other strangers in their video games. All that time spent together, yet we never met them in person. Four years ago Jay and Shaff came to our wedding and since we have been to their own homes hundreds of miles away from ours. However, it had been a few years the last time we saw any of them. Seeing them standing in the middle of the living room was nothing short of joyous.

But the surprises weren’t over.

The next day, we got to spend some quality time with our newly arrived guests. We were eagerly anticipating another Xbox Live friend: Joel (nicknamed Bazz). He lives in Oregon and he is another good friend we had never met in person. We knew he was coming for some time and, apparently, he would be the only one we knew was coming. As he walked in mid-morning, we saw one more guy trail in behind him. Joseph (we call him Fierro) walked through our front door. Surprise number four.

 

 

 

Yet another great guy Corey has met while playing Xbox, Fierro hails from California. They had an intense rivalry in NFL Blitz. The number one slot would constantly pass hands between the two of them. Through the taunting and gloating formed a beautiful friendship. Now that friendship brought him to meet us.

 

So there was the gang. All the people Corey has played with consistently for the past eight years, gathered in one place. The voices I would hear through Corey’s mic drifted through the house. The teasing, jokes, and stories associated with this group could now be told face-to-face.

In the middle of our visiting another knock came. Everyone was here. Who else could have come? Surprise number five, six, and seven walk through the door. Corey’s old youth pastor and officiant to our wedding came in with a huge smile, bald head, and open arms. Phil has known Corey since he was in middle school. Even after he moved to Pennsylvania a few years ago, he has always kept in touch with us. Joey and his wife Tori joined in with their own hellos and hugs. Joey was a high school friend of ours that was good friends with Corey from the start.

 

 

 

By now, the living room is filled with people. The laughter and the stories that went through that room put the biggest smile on my face. Some of Corey’s biggest supporters were here with us, cheering him on and encouraging him up close instead of hundreds of miles away. I had to stop for a moment just to take it all in. I looked around and thought how great this moment was. It’s not every day eight people fly from all over the country to see one person. But here they all were.

Yet, we still had another surprise to go. This time the surprise was solely for me. I was handed a phone that was not mine that had a video chat going with my best friend Brittany. “I don’y know how to say this, so I’m just going to: I’m flying in tomorrow.” I cried. Surprise number eight (and my favorite): Britt was coming to see me from the cold tundra of Chicago!

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By Saturday, we had everyone with us. Jay and Bazz made some amazing food and we had more than 20 people over for dinner. Our local friends mingled with out-of-state people. Family met friends. There was a lot of love and laughter and jokes and sharing in that house that night.

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The weekend flew by and before we knew it people were leaving for home. Jay, Shaff, Wes, and Bazz left Sunday morning. Sunday night we enjoyed our traditional dinners at our grandfather’s house with some additional guests. One person in articular enjoyed the night so much, he said (and I quote) “This is the best night of my life”.

By that Tuesday, everyone had gone home. Our weekend of surprises was over. But the goodness of that weekend did so much for Corey and me. No, this has not been an easy journey. Yes, I do wish we saw everyone under better circumstances. However, I would not trade that weekend for anything.

Sometimes the morale boost we get from the good things in life is enough to make the hiccups and twists seem so small. It wasn’t just seeing those friends on one weekend. It’s the “just want to stop by” visits, and the deep prayers over us, and the smile on people’s face when they see us. People tell me that I am strong and that Corey is strong. The truth is we are only as strong as our support system.

With the type of people supporting us, we could take on the world.

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The Unexpected

One of the hardest parts about a cancer diagnosis is the unexpected. Treatment plans can be made, schedules can be cleared, but then there is a hiccup and all that planning goes awry. 

Our second trip to St. Jude’s had been defined by the unexpected.

On New Year’s Eve a lump was found on Corey’s back. Likely it was a tumor and likely we would be changing his treatment once again. We all prepared ourselves for this news.

Once we got to Memphis and bloodwork was drawn on Wednesday, Corey’s sodium was dangerously low. The normal range is 135 – 145. Corey was at 123. Low sodium can cause muscle cramps, grogginess, and also seizures. To correct his sodium, he needed to be admitted to the hospital right away.

This was unexpected.

The previously scheduled CT scan was delayed until the sodium was better controlled. The scan showed (what the doctor called) “an impressive amount of fluid” in his left lung. It could be causing the pain in back and neck and the sodium issue. But it needed to be corrected by draining the fluid through a chest tube. Surgery for the insertion happened that same day.

This was unexpected.

Thursday night, after a long day of both the CT scan and surgery, all Corey wanted was sleep. One thing after another caused him to stay up for another two hours. By that time, we were told his sodium was 124 and he would be moved down to the ICU. It was 2 a.m.

This was unexpected.

When someone gets a diagnosis of cancer, their entire world changes. The toll the disease and the treatment takes is expectantly difficult.

What we did not realize at the beginning was how difficult it is to live a life in the world of “maybe” and “we’ll see”.

We all quickly figured out the treatment plans set by doctors and the schedules we make within our family can get derailed with the utterance of a single sentence.

I’m not saying we shouldn’t plan or that it’s pointless. More often then not, I have felt relief once the oncology doctors says “This is what we are going to do”.

However, to rely completely on “the plan” will cause more disappointment than comfort. I have felt more heartache and frustration because I thought “This isn’t how it’s suppose to go”.

Changing my mindset changed my attitude when the unexpected happened. While we still set an outline of our next steps, our real strategy  is to simply keep moving forward, whatever that means for the day.

From Recovery to Refractory

The week of Thanksgiving, we received some devastating news: Corey’s cancer spread.

The technical term is called refractory. Basically, there were cancer cells in Corey’s body that did not respond at all to the chemotherapy he was receiving. Even though the major tumor shrunk and was removed, these tumors hung around and only grew. There were no signs or symptoms of the tumors. There was no explanation as to why one tumor shrunk while these festered and fed. But there they were: little grey spots, bringing with them weighted dread and uncertainty.

Yes, we had treatment options. The unfortunate news was that those treatments had about 50% chance of working. To Moffitt’s credit, they held strong with their dedication to fight for Corey. If one treatment didn’t work, they would move to another. By no means did the CT scan change their attitudes. But we also knew our journey through this storm just got extended, and we were headed for uncertain waters.

As you might be able to imagine, Thanksgiving was not the happiest of family gatherings for us. We were surrounded by family and people who loved and sympathized with us. But, for me, it was the most difficult week to get through. We still had so many questions and only inklings of any plans. We were told we had to wait until Monday before anything could be decided. And Monday decided to drag it’s feet.

When we finally met with Dr. Reed, he told us these were the things he hopes never happens, but he always prepares for. Prepared he was. Dr. Reed told us about an experimental study that showed very promising results. If Corey qualified, he would be receiving treatment likely to be more effective than any other treatments we discussed thus far.

This is how we ended up at St. Jude’s in Memphis, Tennessee.

Corey was accepted into the study conducted by Dr. Sara Federico, a previous protege of Dr. Reed’s. He would still be receiving the typical medicines for refractory or relapse cases, Irinotecan (I) and Temozolomide (T). The difference is the addition of a PARP inhibitor.

Simply, the chemotherapy would break the cancer cells’ DNA. Instead of having a PARP protein come in to fix the DNA, the inhibitor will allow the chemo to kill off the cancer cells completely. At least, that is the theory tested in mice and now being tested in people.

PARP Inhibitor Illistration

Illustration of how PARP inhibitors work. Photo Credit: Scoop It! – PARP Inhibitors Cancer Review

 

With acceptance into this study, additional tests and appointments were required. We flew into Memphis on Sunday, and since then have not stopped. Monday through Thursday was filled with back-to-back scans, doctor appointments, and waiting for the next scheduled appointment. Some of these tests brought good news: no cancer in Corey’s bone marrow or brain. Others brought more concern.

From what the initial CT scan showed, the cancer spread farther and faster than we thought. Not only is it in his lungs, but also surrounding his kidney, in the lymph nodes, and the lining of his lungs. There are no tumors nearly as big as the initial one. However, the wide spread of many small tumors means surgery would not be an option to remove any of them. The ones in the lining of his lung causes Corey to be short of breath and unable to take deep breaths.

I’m not going to lie: this situation terrifies me.

I never imagined my husband would have cancer. I certainly never imagined we would be in Memphis waiting to find out if this treatment is effective against the cancer. I feel like each time we have gained some sort of normalcy, we get upended again. But the doctors at Moffitt and St. Jude’s have never once given any indication this is the end. Dr. Reed assured us, while the trial may be our best option right now, it is not our last option.

For those of you following our journey, it may seem like the prognosis is terrible. To be here at St. Jude’s means there is still hope and there is still chances for Corey. A plethora of chances.

The important thing to remember is we still have hope. We are still fighting. This set back is just that. While I may be scared and question why this is happening, I know my husband will continue on until he beats this thing.

From refractory to recovered.

“Right now your life may be playing out in a way you never wished for. And you want out. Not even just out of your situation, but out of the haze that’s keeping you from seeing your purpose and leaving you to the prison of your doubts and insecurities. And how can anyone blame you?”

“But we serve a God of purpose and pain is part of a journey. Many times it’s much bigger than us, but He never wastes a hurt. He never wastes a season – even the darkest. In fact, He will restore you and your greatest ministry just may arise from this pit.”

– Brittney Moses

In God’s Hands

Corey had the surgery. He was deemed “in remission”. We’ve been in and out if the hospital. There have been fundraisers, family time, and gatherings with friends. There have been good days and bad days.

It’s times like these, I have to remember who is in control. I have to remember there is a plan. Even if I can’t see it.

Corey, Michelle, and I went into Moffitt on November 21st expecting to hear the same things, see the same people, and be admitted for the same stint in the hospital.

That is not what happened.

Corey had a CAT scan done first thing that morning. What the results showed by that afternoon was spots on his lung that were not there in August. The sarcoma metastasized. This means we will have to switch the treatment regiment. The chemotherapy Corey was on before was not effective against some of the cancer cells. There is no reason why this happened; it just did.

We won’t know how effective the new regiment will be for another month and a half. Until then, we can only hope and pray for the best.

As some can imagine, this is a very difficult time for us. We know how much you all are praying and supporting us. We appreciate it greatly.

As we get more information, we will be able to pass it along.

Lecrae – I’ll find you ft. Tori Kelly

S-Day Has Come

And by “S-Day” I mean surgery. This is the drum solo in a rock song. The climax of the story when the hero and the villian face off. The halfway mark on a 10k marathon. We are at the top of the hill looking down.

To say the least, this surgery is a big deal. The chemo treatments leading up to this point have been to shrink the tumor in Corey’s rib. Good news is the tumor is half the size it was when we first began.

Our surgeon, Dr. Gonzalez, is very confident in the ease of this procedure  (as he should be since he is the one doing it, after all). But his confidence has helped Corey’s mother and I to stay hopeful that this will be a simple procedure and Corey will be better because of it. 

Now, the hard part is to come: waiting.

 Corey will be in the operating room for about three to four hours. The small army there to support him will be waiting closer to five hours. And I’m sure with every nurse coming through the door, every name called, we will all be wondering when it will be our turn to hear “everything went fine and he is in recovery”.

Check-in is at 9:45 a.m. and surgery will begin at 11:45 a.m. We have confidence that everything will go as planned. Don’t get me wrong, I have been nervous. I have imagined the worst thanks to my overactive imagination. But I know God has this in His hand and nothing will happen that He did not intend.

So here we go…at the top of the hill looking down. After today, Corey will officially be in remission.

“Dear God, in times of trouble, stress, frustration, impatience, in times of anxiety, help me to choose joy.”

Confession Time

For a few months, I have heard so many statements of “you are strong”, “you will make it through this”, “you have been so calm in the face of all this”.

The truth is, I am not strong. I am frustrated. I am scared. I am angry. I am all these things. But strong is not one of them. At least not lately.

Every time I have thought about writing a post or update everyone, I don’t. It’s because I’ve been wallowing. I mourn for the life Corey and I had before this. I cry about the unknown of his upcoming surgery. I stress about being able to continue our lives in a reasonably normal manner when, really, it’s not reasonable at all.

Of course, when you ask me “how do you stay so positive?”, I give a vague answer I wish I could live up to. And lately, my focus has been on “what else can go wrong?” and “what more in our lives must we give up?”.

I get frustrated because we went from our own house to living in a single bedroom. I get annoyed at all the things we are forced to do now: the precautions, the treatments, the invasive surgery. I feel dragged down by everything I wanted for our lives together and everything we’ve had to sacrifice.

And I know Corey is getting tired of the constant doctors’ questions, the poison pumped into him, the many, many appointments. I know he, more than any of us, wants all of this to be over.

People tell us to be strong and we will get through this. But the truth is it’s hard. Being positive, keeping up our normal selves, it’s difficult. Especially when “the plan” goes awry.

But the thing about wallowing is it can be very lonely and very distructive. And it shouldn’t last. Yes, I will still be angry. I will still be upset and frustrated. But, I also will be happy, and giddy, and content.

For those of you going through your own storms: it’s ok to be upset or angry or scared. What’s not ok is letting those emotions get in the way of your fight. Every storm has to come to an end, but don’t let in drown you in the mean time. This is the lesson I’m learning right now. I would have preferred to get the cliff notes…but then it wouldn’t have really stuck would it?

The Biggest Storm in History

Genesis 6:7a, 8

And the Lord said, “I will wipe this human race I have created from the face of the earth. Yes, I will destroy every living thing…But Noah found favor with God.

This morning’s sermon at Bridgepoint Church was an important one. Especially for me to hear.

Most of us know the story of Noah. At one time, God looked at the people he created and only saw corruption. Because of that, he wanted to wipe the slate clean and start new. Every person and every creature was going to be destroyed. Except for Noah, a man who walked closely with God.

Noah built the Ark, per God’s instructions. And when the floods came, Noah and his family were spared.

Pastor Tim loves this story. It shows what faithfulness and walking with God can do. He told us that Noah was available to God and faithfully did the work planned for him. 

Pastor Tim asked: are we being available for God?

God has a plan. God will give us the parts we need to follow His plan. But to get the instructions, we need to walk with God. He revels Himself and what He wants when we have a relationship with Him. Noah did. Noah knew what God was going to do from the beginning.

Pastor Tim also pointed out that whatever God has us do is a means to an end. Should we do our part, God will most certainly do his.

“If you aren’t getting all the parts, you aren’t getting God’s plan.”

All throughout this message, all I could think about was whether I was following God’s plan. Do I have the pieces I need to be successful in this venture?

I realized that the parts I need are the people around me. My parents and my in-laws who make sure Corey and I have what we need. My friends who make sure I have more in my life than work, home, and hospital visits. All the people who have given us their food, their time, their strength, their money. These are the parts Corey and I need to continue through this journey. Hopefully, we can be a light for others.

We continue to battle our fears of the unknown. We fight through the tiredness and doubts. We do so because of what God has equipped us with to make it through our own storm.

Noah built an ark to survive. We are building a life focused on God and His plan for us.

Gearing Up For Round Two

It’s been a minute since the last blog update. But honestly, there isn’t too much to update right now. Which is a good thing.

Corey is feeling good. The pain in his rib is basically gone. He has more days where he is awake and alert and able to visit with friends. In fact, Sunday night he had some friends over for the annual E3 video game conference.

Exciting, I know.

On Wednesday, Corey, Michelle, and I had to go to the hospital. The doctors told us once his temperature goes above 100.4, we would be taking a trip down to the ER. Well, that’s exactly what happened.

At midnight, the three of us left for St. Anthony’s in St. Pete. He was checked out by nurses and doctors and technicians.

6 a.m.: We were admitted and sent to a private room.

“There aren’t many good things about cancer. But let me tell you, getting a private room is one of the few benefits,” said Corey.

We had stayed at St. Anthony’s all of Wednesday. Continous antibiotics were pumped into Corey to make sure any infections would be taken care of.

Ultimately, Corey was fine. He felt good and it was a boring visit. 

Better boring than the alternative

He had already had some really good days, even though he was at his lowest immunity strength. Really, he just wanted to get out of there and go home. Which he finally did on Thursday (albeit with a bit of fighting).

Other than that short stay, our days consist of TV, medications, fluids, and family.

Corey is starting his second cycle of chemo in just a little bit. We aren’t sure how this will effect him since it is different medicines. But Dr. Reed tells us by Friday he should be feeling much better.

For now, we keep our spirits up and hope for the best.

One Down…Thirteen to Go

Corey, Michelle, and I made it home from the hospital today. It was a long five days. After awhile, it was hard to keep track of what day it was.

However, we met so many wonderful people that really made our first time at Moffitt much easier and smoother. Everyone from the doctors to the nurses to the food serivce, we owe a debt of gratitude.

So meet the people responsible for taking care of our boy!

Meet Christen, ARNP. She was one of the first people we met in the very beginning. She was very up-front but very calm when she explained what would be happening during our stay there. And thankfully, she was patient enough to answer all our first-day questions.
We also had a wonderful chemo nurse by the name of Melissa. She had such a great sense of humor! She would make funny faces and just talk with us outside of all the medical mumbo jumbo. Even though she would poke Corey with a shot everyday, she was still one of our favorites.

Speaking of favorites, she was probably one of the top. Jennifer was the pharmacist that made sure everything was good with the chemo and made sure his nedication was correct. She went above and beyond to make sure we went home with the right medication and made sure we understood everything about the next few days. I’m pretty sure she did not know what she was getting into when she came into our room.

We also had a wonderful night nurse the second half of our stay. Her name was Mirium. She was really special in the fact that she made sure Corey got as much sleep as possible. His vitals had to be checked every four hours. Day and night. Mirium would have them check vitals right before he went to sleep and right when he woke up. It really was very helpful since he would already be up multiple times a night.

And finally, we have Neesie. She was most important because she would being us food. Not just a tray of whatever we ordered, but she did so with the sweetest smile and most joyful spirit. Believe me, at 8 pm, a joyful spirit is what you need to make a long day better.

Of course there were many more people who were there to help us and make sure all our questions were answered. They made sure we were taken care of. And most importantly, they made sure my husband was getting better.

One round done. Thirteen more to go. We are just getting started, but the team behind us gives me even more hope for our journey through the storm.

Day One

The big day has finally come. And we’ve been greeted by a slew of information, people, and medication.

Thankfully, the people here are amazing. They ask constantly what his pain is like, if he is distressed, how he feels. Moffitt knows what they are doing. They even went as far as to move us to a bigger room.

For the past few days, we were getting some conflicting information about his treatment. Mostly to do with the amount of time he would be pumped with chemo. We talked with the pharmacist extensively. Corey will be getting two hours of chemo ever day he is in here. And his pain could be gone by the end of this round. An answer to a prayer. 

He has already completed the two hours of chemo for today and he’s doing great. Nothing has changed physically yet. He is a little reminiscent of a cyborg with all the wires coming out of him.

The next five nights Corey, me, and Corey’s mom, Michelle, will be waltzing the corridors of Moffitt. So prayers are so welcome!