Our First Round Of New Chemo

I had packed Scott's chemo bag earlier in the day. Trail mix, granola bars, peppermints and 3 bottles of water. I forgot the Tylenol but, when we got to the hospital I went down to their pharmacy and they had a small box of a four pack so I bought a couple to add to my bag. I have done a ton of research before this chemo. what are the best things to eat and drink to flush the chemo out of the body. So the day before I told Scott to drink fruit juices and water. For breakfast egg whites, toast and orange juice.

Scott and I were not sure what to expect this round of chemo. MD Anderson is so different than Florida Hospital, we thought it would be like running cattle. We were pleasantly surprised. Most of the rooms are private. Scott's chemo only takes 45 min. But, maybe because it was the first time and we got started late it took a few hours. We have never used MD Anderson pharmacy so I ran down to the first floor to give them all Scott's insurance info. so they could key the insurance in their system. I then went back up to the 5th floor where Scott was having chemo. After chemo I went back to the pharmacy to see if the nurse had called in the Phenergan an anti nausea medication - not yet. I went to the 2nd floor (Dr. Nick's office) to pick up the RX and take it to the pharmacy. Then I went back to the pharmacy where they said it would be 45 min. I then went to the cafeteria to get Scott an Apple juice. Back to the pharmacy and the RX still was ready. After another 10 min. the anti nausea RX was filled but the injection Scott needs once a week needed pre approval because a box of 4 is $3,000. So I may have to take him back next week for the injection and hopefully then they will deliver it to the house where I can administer it to him. I gave him his first one after chemo. in the office.

Scott felt great on the way home. We stop at Michelle's to pick up Milo. THANK YOU Michelle for picking up Milo and letting him play with Boston and Turner he was as wore out as Scott and I were. When we got home I rolled roast beef around a cheese stick for Scott after he ate that he drank an Ensure, ate fresh blue berries , an assortment of mixed nuts and drank grape juice. So I think the first round of chemo went pretty well.

I am going to continue to buy fresh fruits and vegetables hoping Scott will continue eating them. I can't believe how much fruit antioxidants have in them. He loves the prunes that come individually wrapped and those are the highest in antioxidants. At the hospital I found Tropicana Apple Juice with vitamin C . I haven't seen it in the stores but, I haven't looked for it. I'll have to see if I can find it or order it.

No Longer A Virgin

Scott is no longer has virgin skin. He had his tattoo today. OUCH!!! I can't believe how many people show interest in Scott's story. He is truly a walking miracle but, others call him superman.
The stenciling before . I asked Scott if he was feeling a little like Clark Kent. He said it wasn't to painful yet.
The finished product. So many people called Scott Superman that he thought he should get a superman tattoo. He didn't want it to look like a kids tattoo that you would get out of the bubblegum machine so we found a picture that made it look like it was ripping through his arm.
Tim from Old Ghost Tattoo did a great job. Scott is pleased with his tattoo. "You rock Tim"After Scott's tattoo Tim rang the virgin bell.

Doctors, Doctors And More Doctors

Scott had an appt. with Walkaide yesterday. The walkaide is an electrical stimulate that helps remind your foot to pick itself up. Because of the electrical running through the body Scott needs to be clearance from his neurologist due to a risk of seizures. Have I mentioned Scott has not had a seizure post op surgery.

Today Scott has an appointment to see about getting his AFO adjusted to help with walking. Scott also called me today to tell me Dr. Nick wants to start chemo on Thursday. It took the wind out of both our sails. I think we both knew it was coming but, seemed like it came out of nowhere. Of course I am a wreck and Scott was to begin it so he will be done with it.

First Outing

June is full of Birthday's for us. This weekend was Dr. C's, Jackie and Matt's Birthday. For Matt's birthday he chose a movie and dinner. It was our first outing since Scott's surgery. We saw Hangover - funny movie but, not for kids and went to Duffy's for dinner.
The birthday fairy delivered Cold Stone Cupcakes to Duffy's before the movie so Matt would be surprised after dinner.
Sunday Scott and I thought about Church but, didn't make it that far maybe next weekend. I cleaned and did laundry. I don't know how we have so much laundry from 2 people.

Milo keeps going to the back of the waterfall and barking. I thought Scott's squirrel was in there. We had Skylar over for a sleep over and swim. I opened the door to the waterfall and a possum laid there looking at me. I got the water hose to try and get her out and she started running and so did her babies. I felt bad that she had babies so I closed the door and hoped she would move during the night. Milo wanted to go out that night and he was barking so I went out to see what he was barking at, he had a baby cornered. I chased him back in the house and hoped the mommy wasn't to far away. I got up in the morning opened the door to the waterfall and there was one baby. I shut the door and hoped the mommy would come back for it that night. I got up Sunday morning opened the door again to the waterfall and no baby.
I heard Milo barking went outside and Scott's squirrel came home to be fed. Damn wildlife was everywhere. Guess it doesn't matter how close you live to the beach.

Patient Update

Scott hasn't had a seizure since his surgery. His headaches have been minimal, nothing two Tylenol can't handle. Friday night we had friends from Georgia on their way to West Palm Beach stop to spend the night. We visited until about 3:00 on Saturday and then they headed to their destination.

Saturday Scott got up to get dressed and brush his teeth and his left leg was bending and his foot was perfectly straight. Sunday he had a difficult time walking but, his leg was still bending and that leg has not bent in a year and a half.

Things seem to be going well. I am still trying to figure out how I balanced a job and a family.

Thanks so Much

Hey, it's me the patient. I want to thank everyone who gave support in this very trying time for my family. The love notes sent to me while I was sick meant more then words could describe, that I promise. when you were as sick as I was friends and family are the shoulders you need to stand on until you feel better and although I have a long road of recovery in front of me, it felt great to see everyone standing up beside and supporting the most important person in my life, my wife. we both needed people there and I am so impressed with all of you who took the time to show support for not only me, but her. I will not forget your kindness, and friendship. My wife is my world and means everything to me, without her I truly feel I would not have made it through this dark time. So once again thank all of you for the showing of support, it really blew me away. please do stay in contact and continue to follow my progress through the blog or drop me an email anytime.- szech@cfl.rr.com

Weigh In

I brought out the weight scales to see how much Scott weighs - I was thrilled to see 156. He is eating really well. I made a large pan of sausage gravy, to make it easier for him to warm in the microwave, I divided it into smaller bowls . He loves biscuits and gravy for breakfast and it is the easiest thing for me to make.

I made spareribs, salad and bake potatoes for dinner and he cleaned his plate. He even opted for an rice krispie treat for dessert. In the morning if he is awake at 4:30 which he usually is, he drinks an Ensure and a apple juice.

I try to keep a few things prepared in the refrigerator so he has a choice of what he would like to eat. I don't want him to get bored with one thing. It also makes it easier for me.

Through all this is has made me want to be more attentive to people that are ill. How even if it is a one or two meals a week - how much easier it will be for them to have an already prepared meal. So I will be asking my pastor who I can help.

Sorry To Panic You

A couple of you thought the Tail Spin of Events was recent. It was what started all this. I didn't mean to panic people.. Sorry

Taking A Break

This weekend I decided to take a break from the outside world. I choose not to answer my telephone, not to open my computer, I didn't even open my mail . I did do a trip to the grocery store.

Scott and I spent the weekend watching Jon & Kate plus 8. Oh lord, I don't know how they do it. We had never seen an episode. I think we are caught up enough on the last 4 seasons. I cooked and cleaned and cooked and cleaned. I have meals prepared ahead of time so Scott can just pop stuff in the microwave and it still be homemade. He loves my biscuits and gravy and that is oh so easy to make.

Scott seem to be doing OK I think weird neurological healing is causing crazy things with his left side. I spoke with Dr. Nicks nurse this morning outside of a few blood tests we have the go ahead on chemo : (

Events That Threw Us Into A Tailspin

I am asumming that when Scott woke up at 3:00 am on the morning of April 23, he was disorientated from all the swelling in the brain. When Scott got to the foot of the bed he collapsed. The sound was a horrendous. I jumped out of bed and Scott was laying on his stomach, which means he fell from a standing position forward.
Blood was coming from his mouth and when I rolled him over his eyes were open but, he was dazed, non responsive and he had started to posture. I picked him up and put him on the bed and began to pack for a trip to MD Anderson. Something kept telling me not to put Scott in the car and drive to Orlando. I called 911 to take him to Holmes and thought once they checked him out there then I would drive him to Orlando.

I never imagined the seriousness of his condition. They took a CT scan and the emergency room doctor came in with the results. He looked at me and said I am not going to sugar coat it for you. The swelling in the brain had began to invade the other side of the brain, the mid line shift had shifted 15 mm, there was bleeding on the brain and the spinal fluid had began to collect on top of the brain. Scott was going to need emergency brain surgery. Scott had a horrible headache and I asked if they could give him something for his headache and something to calm him down.
I don't even know the series of phone calls I made. I remember calling Aaron, Scott's best friend in Jupiter, my mom and Brandi. Brandi showed up in minutes. I saw Tex from (Texas Roadhouse) walk by the room , his son is an ER doctor. I remember telling him his son wasn't on call today and he said he was there to see me. Confused, I asked him how he knew I was there and he said my mother had called the church. Then walked in Dr. Alfant, he had left his office to come by to see if I needed anything and to give me a hug. Then it seemed like my mom, my sister and Aaron had just appeared in the room.

They began to bring in Mannitol, it is a sugar alcohol solution that reduces brain swelling. I said to the nurse that I thought Mannitol had to be given over a three day period. The nurse said not in a situation like this. The Mannitol was given within an hour and a half. They asked Scott how his headache was, it was no better. So they administered another glass jar of the Mannitol.

The neuro surgeon on call is the best in Brevard County. He walked in and said that Scott was going to die. He said, Astrocytoma patients live about 15 years and Scott was at his 15 year mark. He said , we can do the surgery but he doesn't even know if Scott would survive it. If he does survive then we could be right back where we are in four days, Scott could end up paralyzed or blind. Scott had heard every word and began to cry. I gave the surgeon Dr. Nicks cell phone number and asked him to call him. The odds were against us. I think I was in a state of shock and I was faced with a decision that could end or possibly change the rest of Scott's life. I began to wonder if I was being selfish in wanting to keep Scott here, what would be his quality of life, did I want him to suffer more chemo treatments etc...I walked out of the room broke down. I didn't feel as those things were going to be okay but, I didn't want Scott to be scared, so I told him he was going to be fine.
I then looked at Scott's friend Aaron, what do I do? Aaron stood over Scott and took his hand - I don't know what was said all I know is Scott said "surgery". I then stepped outside the room to call Dr. Nick on his cell phone. I asked him what to do. I told him what the surgeon said and Dr. Nick said "do the surgery". I told the surgeon we would go ahead with surgery. They brought all the papers in for me to sign but, before I signed them I looked at Aaron one more time and he nodded yes. It seemed like seconds after the papers were signed that Scott was taken to the pre-op surgery room. The nurse from the ER came up with tears in her eyes gave me a hug. As they took Scott to surgery, they pointed to a hall way at the end of that hall way was where the surgical waiting room was. I looked at it, the more I walked the longer it got. I remember sitting down in the hallway and crying. A nice lady walked by and asked me if she could give me tissues. A social worker asked me if she could call someone for me. My friends and family was there - but, I felt so alone. I looked up and Michelle, Karen and Doreen seem to just appear. After being in the hallway for awhile, I decided to go in the waiting room and wait. I wanted to be with Aaron because that was the closest I felt to Scott.

After the surgery Dr. T. came in and said he had removed as much tumor as he could. Scott wasn't on a ventilator , he was making swallowing noises and let's see if he wakes up. I had received a phone call on my cell phone from Tex giving me Scott's room number, his son had followed Scott through the computer and was relaying information to him. We all stayed at the hospital until Scott was out of recovery and taken to his room in SICU. I wanted everyone that had stayed the duration of the long emotionally and physically day be able to see Scott. It was hard for me to leave that night but, I knew there was nothing I could do there and they were not budging on the visiting hours.

Post Op Update

We saw the surgeon today. The speck in the brain is metal. If Scott were to have an MRI it would at like a swizzle stick in the brain. MRI's are out for now and the future. This worries me because MRI's are a way of showing progression and regression in this disease. So Dr. Nick is going to have to convince me CT's are OK.
The surgeon said that Scott has exceeded his expectations. He was thrilled to see Scott walking with a cane. I told him while I was trying to comprehend everything I was watching his body language and I didn't think he wanted to operate on Scott and he said he didn't. He didn't have any hope. I thanked him for doing the surgery. He apologized for the metal that was in there but, I told him it was a small price to pay for saving Scott's life.
Dr. Nick said that after reviewing the post op CT scan that there is a mild hemorrhage and we wouldn't be able to began the Avastain for now. The Avastain can cause hemorrhaging, so if there is already mild hemorrhaging it will only progress. Dr. Nick has a new game plan and we are waiting to hear from the nurse. It still involves chemotherapy.

Two Steps Forward One Step Back

Our appointment with Dr. Nick went great. Scott and I agreed because of the walking it would be a good idea for him to be in his wheelchair. When Dr. Nick walked in he assumed Scott could not walk so when Scott stood from his wheelchair and walked across the room independently, Dr. Nick's face lit up. He told Scott how great he looked and was over all amazed. The cause of Scott's domino effect was just that a domino effect from small things that added up after a period of time. We are still going to go with our same game plan as before with the Avastin , Sorafenib and add a special cocktail of drugs along the way. Scott has gained 6 more lbs and he hasn't been home a week. Dr. Nick agreed that eventually the brain surgery had to be done, to help relax the brain. He was sorry that it was done under the circumstances it was. But, is pleased with the results. Dr. Nick wants a base line MRI and we will go from there.

We had an appt. for a MRI today and they thought as a safety precaution that a CT scan should be done first. The CT Scan shows by the skull cage a speck of metal. The metal has to be non ferrous or by placing Scott in an MRI can cause the metal to move slicing through the brain. The radiologist is trying to reach the surgeon. So we will have to wait......

Beginning Stages of Recovery

Scott did really well this weekend. He spendt most of the weekend, resting, relaxing and enjoying being home. He is doing great with the use of his quad cane and seems to have the wheelchair mastered. Every movement just has to be slow. I am anxious to get the bench in for the shower I ordered, I think that will make it allot easier on showering.
I premade meals so he could have yummy food while I am at work. Before I left work this morning, I placed them in the oven to keep them warm. I just hope the heat doesn't dry them out. Scott was up this morning at 4:30 so I brought him an Ensure to drink. I have no complaints, he's a great patient and a great husband. Sunday he treated Michelle and I to a facial at Essentials. We had mimosa's while waiting for our esthetician. It was a little piece of heaven.
Milo has become very protective of me and every chance he gets he weasels his way in between us and places his paw on my chest. If Scott reaches over to touch me Milo takes his paw and tries to remove Scott's hand.
The nurse from Sea Pines will come today to assess Scott and to set up physical therapy. We have an appointment Wednesday with Dr. Nick and an appointment sometime this week with Dr. T. It is going to be a busy crazy week.

Baby I'm Coming Home

I brought Scott home today. I wheeled him in the house and went back out to get his cane and he had already wheeled himself in the kitchen. I had Joe put in an under the counter glass front beverage cooler so Scott would be able to get drinks and cold snacks if I were not home.

Scott ate a fresh spinach salad , roast, stuffing , peas , ice cream and thin mint cookies for dessert. Later, I hope he will drink and Ensure for a snack.

Later, I helped him in the shower and soaped him up and stood there while he got all the soap off him. I put his shoulder brace back on and then he stood while he brushed his teeth. I thought I would be really nervous but, he seems to have it down. He is not over confident but, is very cautious.

Milo is glad to have Scott home. Scott is sleeping and Milo is sleeping on his shoulder.

Deployment Approaching

I received a call from Blake tonight, he gave me a date for block leave. My heart begin to flutter when I asked him if he was being deployed. Blake said I didn't say anything about being deployed but, as a mom I felt it. His deployment will last for 12 months.

I then sat down and month by month started to realize the things we will miss throughout the year. Blake will miss Skylar turning 6. We will all miss the Thanksgiving and Christmas holidays. Blake and Kellie will miss their first wedding anniversary. We will miss birthdays.

My heart is aching. Every time I see or hear that another US Soldier has been killed I stop. I look at the TV and I wonder if the news is being reported before the family has been contacted. How hard it must be for the family of the soldiers that are so far from home. Now when I hear about another life of a US soldier, that's life has been taken ,I will wonder if it is my son.

One More Day

Scott comes home tomorrow. I have done a couple things in the house to make things easier for him. I even ordered a personal oxygen bar that increases the concentration of oxygen by 30% helping to relax and reduce stress. It even has a speaker that plays up to four different soft musical patterns. I bought this for two reasons, I thought it would help with the healing of Scott's brain and I thought it would be good for my skin.
I am looking forward to him being home but, also know the recovery is going to be slow. I am still waiting for a call from Dr. Nick's office to see what day next week I take Scott to see him. Everyone is more than welcome to visit Scott at home. He would probably Welcome the company.
Thank all of you for your prayers. Please don't stop praying.

Physical Therapy

I went to physical therapy on Wednesday to practice some things with Scott. It was the first time I had seem him walk after surgery. He takes baby steps, with the quad cane but does really well. I think he just needs to strengthen the left side. His transfer from the wheelchair to bed or couch was good. They are sending him home on Saturday with a wheelchair ,quad cane and strict instructions not to be out of the wheelchair if I am not there.
I learned how to help Scott safely up from the chair, transfer into the car etc. Physical therapy will come to the house three days a week to work with Scott. Both Scott and myself are nervous for him to be home, me more so then him but, I do think it will be good for his spirit.
My heart goes out to the families of the patients at Sea Pines , I know I could have been in the same position they are. I am so thankful I am not. From the beginning I have looked at all the blessings Scott and I have been given through such a dark time in our lives.
Later, I will post what happened that sent everything into this tail spin.

The Man I Love

Scott and I had a wonderful dinner last night. I had picked up Olive Garden and even found a cake similar to wedding cake. Michelle helped Scott out. She made a card with our wedding picture on it and left the inside blank for Scott to write. Michelle has become Scott's little elf. He's is lucky because no one knows me better than her.

As Scott and I were having dinner , he was telling me about a guy in therapy and how he is really stroked out. When Scott's nurse came in Scott asked for the guy's name. But because of hippa she was unable to give it to him. The wife on the man walked in and said to Scott I heard you wanted to know my husbands name. Scott said yes, every night I pray for the people in here and I want to pray for your husband by name. She said his name is Steve and he had an aneurysm. Scott told her Steve would be in his prayers every night.

When I got home I received a phone call from a man I had grown up with. We used to hold hands and roller skate. I think we were six. Anyway, he was checking on Scott and says him and his boys pray for Scott every night. It means so much to me for so many people to be praying. I so believe in the power of prayer.

Happy Anniversary

Happy Anniversary Baby. These have been the best years of my life. I love you with all my heart

Scott May Be Sprung

Scott has a discharge date of May 16, a week from today. I am ready for him to be home but, wonder if it is premature. I will attend one of Scott's physical therapy sessions next week to see if I am as comfortable as Sea Pines is for Scott to be home alone.

I will have to call Dr. Nick on Monday to make an appt. for the week after next. I dread that appointment but, know it's something we have to face.

Our picnic was fun. Scott was glad to get out of his room for awhile. Skylar did a great job on wheeling Pappy around. When we went back inside Skylar looked at me and said this is so sad and then she leaned over and said it was sad that pappy was in the hos-i-pool. I told her he was getting better but, she said again it's just so sad. On the way home she must have been on a sugar high because she was telling the joke about why the chicken crossed the road and then she would laugh. It was funny because she thought it was funny.