The journey begins

After finding out about Scott's stroke, I was left with many questions and many concerns. From February 21st to March 31st, Scott had to deal with a very tough journey. Away from me and the kids, stuck in the hospital, he felt alone. As he came to grips with the cancer and his disability, he had many moments of intense sadness. We were told that if he works at it, he could eventually learn to walk and regain much of what he lost. 

After leaving the ICU and a brief stint in a recovery ward, he was moved to the rehabilitation unit. Several hours a day working with physical, occupational, and speech therapists, Scott began to relearn what he had lost. Cognitively, he did great. His vision was limited, especially his peripheral vision to his left. He had tracking issues, too. But his greatest challenge was just trying to sit up.

His therapists pushed him hard. He had days where he had back pain from everything. I remember he initially was very stubborn about his back hurting and refusing to sit in his chair upright. It was tough seeing him suffer, to be in pain. When he was about 2 weeks from his planned discharge date, we had a family meeting. All his caregivers and therapists got together with us to discuss where he was at and what we would need to plan for. I remember them saying that at his current ability level, he would need two people to assist him at home for transfers and help in the bathroom. After the meeting, I had a discussion with Scott. I told him that he has a lot of work to do in two weeks. I told him that he needs to be at only one person assist. We can't afford for a two person assist status. 

That weekend, I had a lot going on and couldn't visit him. But he sent me many texts to tell me he's working on his ability to sit upright unassisted. During the weekends, he didn't have therapy, so he mostly just lied in bed. This time, he was working his core muscles to help support his upper body. On Monday, I went to see him and as I came to his room he was sitting upright, on his own, trying to change his own clothes. It was an awesome sight to see! He was so proud of himself. Unfortunately, he freaked out a nurse or two with his sitting up abilities.

Over the next two weeks, he progressed at lightning speed. Sitting up unassisted, doing tasks while sitting up, using a wheelchair, and practicing walking. It was amazing. He found his motivation to try harder and did so. The month and a half while he was in the hospital was difficult. I wanted so much to be with him every night, but I had four kids at home that I had to be with, too. Melayna, our youngest, started sleeping in my bed with me. She took showers with me. She clung to me. 

We eventually got through it. When he finally came home, it wouldn't be to the home he left. But that's for another post!

Scott and his Perry the Platypus. Given to him by our good friend, Tim.

Scott practicing standing and taking steps with therapists

Another view of him and his therapist practicing his mobility

Scott's first excursion out of the hospital. They didn't go far, but he got some fresh air and sunshine!

Scott on one of the exercise/rehab equipment

Scott with the two oldest kids. They shaved their heads for their dad.

A comparison of Scott's facial control. After surgery, his left side became paralyzed. As time passed, he regained some control of facial muscles

Scott in his first appointment with the radiation oncologist sporting his Jayne hat. 

What else could go wrong?

 I was anxious. My stomach was in knots. But after learning about the news of Scott being unresponsive on one side, I was afraid. I was scared out of my mind. I had no idea what we were going to do. I didn't know what to expect. What would he be like? How would he change? Will he be like that forever? 

Kate and I made our way to the fourth floor. We looked up at the signs and make our way to the ICU. We find the ward that he is staying at and as we enter, I look up to see a sign. Neuro ICU. Flashback: my mother died here. Eight years and six days prior we had to let her go. She was brain dead. I immediately began to sob; tears falling down my cheeks. Kate and someone at the nurses station began to ask if I was okay. I could barely utter the word mom.  Thank goodness he wasn't in the same room. But there he was. Bandages. Tubes. Machines. 

My husband, now helpless in bed. He was mostly out of it. But he was restless. Already restrained on one side.  He kept moving his right arm and leg. He kept saying free arm. He nearly pulled out his tubes. Hence the restraints. 

I couldn't stay long. Tired from waiting all day. Knots in my stomach from being in that place. And children to go home to. He was being taken care of. There wasn't much I could do. So I left. Yet I felt awful for leaving. How do you balance husband and children. How do you choose? 

The next morning I made French toast and sausage for the kids. I felt they needed normalcy. Their worlds have turned upside down, too. They asked to see daddy. I could not let them. They are too young for the ICU. 

It would be later that, after the kids saw a child life specialist and I visited Scott for a bit, while we were at Burger King I got the call from the doctor. Scott had a stroke which is causing the paralysis to one side. After recovery, he would likely undergo rehabilitation. My husband would be wheelchair bound. I broke down in the parking lot. In front of my children. Hayley came to hug me. Comfort me. I really did not know what to do. Of all things, we really didn't need this hurdle in our lives. As if cancer was enough. A stroke?! Wheelchair? How was he going to get in our house? Could we break our lease? Could we find a wheelchair accessible home to rent? What would he think? What would the kids think? Could I take care of him? So many unanswered questions. 

Another bump in the road

Friday, February 21, 2014 – Longest day of my life. Scott went in for surgery. Six hours is what they said.

 

 

Kate (Scott’s mother) and I barely made it before they wheeled him from the 6^th floor to surgery. We accompanied him to the prep room. He was still eerily calm about the whole ordeal. As if, he was still in shock and denial. The only thing that was bugging him was how bright everything was. The last few days, he liked having a wet washcloth covering his eyes. He said it felt better. Otherwise, he had no complaints about any pain or nausea. Shortly before surgery, our friends, Jenny and Jose, met with us.

Scott requested they play his music in surgery. He had our Bluetooth speaker and his phone already playing country music. He kept playing “My Next Thirty Years” by Tim McGraw. I kept thinking, ‘does he not realize what he has’. I trembled in fear and cried as they were getting ready to take him back. He looked at me and said everything is going to be fine and told our friends to make me smile. He didn’t want to see me sad.

 

 

It took me a bit to regain my senses as we headed to the waiting room. We found a corner to hang out, plug in our devices, and just wait. Most of that day is a bit of a blur. I remember Tristan and Melayna stayed with my dad and his wife. I remember our older two not being able to make it through the day and my dad having to pick them up early from school (we gave them the choice of going to school to keep busy and distracted). I remember playing a board game. I remember getting cafeteria food and not eating everything. I remember my friends Dani and Tim staying with us. I remember checking the screen that listed patients in surgery by code and how long they have left in surgery. I remember talking to financial services finding out that it is unlikely we’ll qualify for Medicaid. I remember talking about books. I remember talking about kids going through that awkward phase of learning about sexuality – some of us have children going through that phase – while some of us haven’t gotten there quite yet. I remember laughing. I remember crying. I remember it being so, so long.

 

As our friends eventually began to leave, the six hour mark had passed. It wasn’t until the 8 hour mark that Scott’s surgeon came out to tell us that he did wonderfully. They’ve removed most of the tumor and are sending it to pathology. He has yet to wake up fully and they are in the process of moving him to the ICU. We could head up to the fourth floor in about thirty minutes. A big sigh of relief. One big hurdle over. Or so we thought….

 

About fifteen minutes later, his surgeon returned to deliver some not-so-good news. As Scott was beginning to wake up, the noticed that his left side was not moving and not responding to stimuli. Something went wrong. They were taking him for a CT scan to find out what had happened.

 

Another hour and a half goes by when we are finally able to go see him. We collect our things and head up to the fourth floor. Anxious to see my husband, I really didn’t know what to expect.

What comes next?

My last post, I went on to describe that fateful day when we found out something was seriously wrong with my husband, Scott. That was likely one of the worst days of my life. I've lost my mother, lots of grandparents, but nothing compares to when you find out that a loved one is terribly ill. What comes in as a close second? Telling four children that their daddy is very sick...

After I got home from the hospital that first night, my mother-in-law and I stayed up until 3:00am sobbing, talking, planning. My body was exhausted, but I couldn't go to sleep. My mind was racing a mile a minute. My head throbbed from all the crying. I hardly slept that night. I got up early the next morning in preparation to telling the children. 

Remember our youngest got into all that candy? Full reign of the house while Daddy was sick? Yeah, that caught up to her. While my mother-in-law cleaned up the red, sticky vomit from her and her covers, I braced myself to tell the three older ones. I sat them down, side-by-side. I grabbed a dining room chair and sat in front of them. As I grabbed their hands, the tears came flooding down my face. 

"remember how Daddy went to the hospital last night?"

They nod.

"He's still in the hospital. He's very sick. They found something wrong with his brain called a tumor and he is likely going to have surgery to remove it"

All of this, while in tears. Sobbing. The girls react by crying with me. I continue to explain what we think is wrong with him. I go on to say that I'll really need their help, especially the older two, who are 12 and 10. I tell them that we are going to see him in the hospital and that they are missing school for the next few days. My son, who is 8 years old and has ADHD, hardly made eye contact with me during this conversation. I could see out of the corner of my eye that he was studying me intently, but as soon as I look at him, he turns away and stares off elsewhere. His eyes glossed over, but no tears came. He eventually took his hands away from mine. I hugged the children and we proceeded to have breakfast. My son was done first. I told them all to get dressed and ready to go to the hospital.  They could each pack their backpacks with their Kindles and books and some small toys to stay busy.

After, I finished eating breakfast, I headed towards my room to start taking a shower and getting ready. I pass by my son's room and I see him sitting up in his loft bed, holding his beloved bear, staring out the window. I ask him why he hadn't gotten dressed. He then says, "I want to talk to Grandpa." My heart sank. I got my dad on the phone and he assured his 'buddy-boy' that everything will be alright. Once he was finished talking with Grandpa, he then got dressed and ready to go.

That day is mostly a blur. I remember taking the kids to the hospital. I remember Scott having to ask for Tristan to come over because he stood back taking in all the sights and sounds. I remember Scott having a full body CT scan and waiting until really late for the MRI. I remember Scott being cocky and confident about beating this thing. But mostly a blur.

Day three was when we found out from the neurosurgeon the results of his MRI. My rescuer, my hero in all this kept the children occupied as Scott, his mother, and I learned of what we were facing. I'll post about her later, as she is so deserving of praise and gratitude.

Glioblastoma, as suspected. Brain cancer. They will operate the next day. They plan to remove as much of the tumor as possible.  After surgery, he will heal up for a bit, then start chemo and radiation. The surgeon said he will more than likely lose peripheral vision to his left side. Less likely, he could have a stroke during surgery which could lead to death, paralysis, and other side effects of strokes. It is a long surgery. He was scheduled for in the afternoon, but then it got moved up twice. Once to 10am and then 8am. He was still determined to beat this thing - never referring to it as cancer. He was eerily calm about his predicament. He was still in shock.

It took every bit of self-control to not look up Glioblastoma. And I resisted for nearly a week. In the dark about how bad it is. How long most people live with it. What it does to a person. What treatment will be like. So many unknowns, but all I wanted to do was focus on the now. Because at the time, that was my last day with my husband before his surgery. Before an unexpected side effect of surgery altered him in a very dramatic way.

Everything is different now

I know I haven't posted here in a while.  When I did, I posted about my kids.  My hobbies.  My obsession with Bento.  What happened?  Life. Commitments. School. Work. Kids. You name it.

I don't make any promises, but I need a place to put all my feelings.  To create a personal diary. A log of what's been happening so I don't overload the feeds of many of our friends.  I hate that there have been so many downs than ups.  So, where do I start? The beginning is as good as any.

On February 18th, our lives changed forever. My husband, Scott, had been having bad headaches and got pretty sick to his stomach over the weekend. On Monday the 17th, he went to the doctor's office and was given antibiotics and flonase for a sinus infection.  However, on the 18th, things took a turn for the worst. He texted me from home saying his headache was still pretty bad and he was throwing up. The worrisome text came when he said he fell.  He partially blacked out or got light headed while throwing up in the bathroom.  He was too scared to drive and pick up the kids from school.  That's when I offered to go get our son.  He called his friend to pick up his children (Scott picked up our friend's kids four times a week and watched them in the evenings).  I clock out and lock my computer, thinking, I'll be back.  Just taking a lunch break to get our son.  But when I got home, I was taken aback by how weak my husband had gotten, sitting on the bathroom floor, constantly throwing up what little bile was left in his stomach.  Our daughter, age 5, had gotten into a bunch of Valentine's Day candy.  She had free reign of the house.  I had no choice but to call the nurse's line.  I described his symptoms and she immediately recommended the ER.  He would become severely dehydrated if he can't keep liquids down.  That's when he fell over again.  He was so weak, he couldn't get up.  The nurse recommended that I call 911.  Scott freaked out and forced himself up and onto our bed.  I called our friend over and between the two of us, managed to get Scott to his truck.  Our friend took him to the ER while I stayed home with the kids.  Once my mother-in-law was home and the kids were fed dinner, I headed to hospital. 

The had given him meds for pain nausea, but both were clearly not working. They had just finished a CT scan before I arrived. Now it was wait and see. I was thinking meningitis. I've had it before and my symptoms were identical. What I didn't expect to hear when the ER doctor came back was "a mass in his brain."  It looked like a tumor in his frontal lobe. My heart sank. "It may be cancerous." My heart was just crushed. What? A tumor? What does this mean?  The ER doctor had to consult with a neurologist. He'd let us know what he'd find out. 

Tears already started to fall before the doctor walked out. I saw an initial look of shock on Scott's face, then a calm came over him. I was panicking inside and out. Seeing that Scott looked calm and tired, I told him I had calls to make. His mom. My dad. My boss. Some of my friends. Each time, I am crying and shaking. I don't know what to do.

An hour later, the ER doctor came back. He spoke with the neurologist and was told it looks like glioblastoma, brain cancer. An MRI will need to be done to confirm this. Surgery will likely happen within a few days. They would need to start Scott on a steroid to get the swelling down. The will also transfer him to Memorial Central, since that is where the surgeon is at.

I became overwhelmed at that moment. So much information to process. Cancer? Surgery? 

Scott continued to look calm. He told me of a few folks he wanted me to call. Out in the hallway, I sobbed as I made all the hard calls. My brother. Scott's work. Our friends. My mother-in-law again. My dad again. A stranger passing by, saw me crying and offered a hug.  I sobbed in that woman's arms. I didn't know her, but she knew exactly what I needed at that moment. I felt so alone in that hallway just moments before. Scott was in shock. I knew he was. So, he couldn't reciprocate my feelings. So, I cried in a stranger's arms. So, to that stranger, if you happen to ever chance upon this, thank you very much. 

We waited for them to take Scott away in an ambulance. I had to drive home, pick up some pajamas and other things for Scott to have at the hospital. I said good-bye to him and after they wheeled him away, the ER doctor came to me and gave me hug. He told me to be strong and wished us luck.

Just a few steps out the front door of the ER and I could feel like I couldn't go any longer. No one was around to see me in my moment of weakness. I sobbed so hard, I wailed. The tears came and didn't stop. I could barely see in front of me. My arms held tight around my mid-section. I felt like I could wretch. My stomach churned. My head swam. Yet somehow, I put one foot in front of the other and made it to my car. I went home to cry even more with my mother-in-law. I gathered Scott's things and headed for the other hospital. 

He was resting when I got there. They put him on stronger medication to ease the nausea and pain. I stayed with him for a bit. He changed into pajama bottoms and made himself comfortable. We talked for a bit, but he avoided talking about cancer. He was fairly certain he'd be back to himself in no time and ready to interview for the Sheriff's position (he had just passed the written test that weekend and was scheduled to interview on Friday). He was tired, so when he was ready to sleep, I headed home.

Panic set in once again. What am I going to tell the kids? How are they going to react? What am I going to do with daycare and everything else? What about work?