Recovery 2

Dave did amazingly well after surgery. He had surgery Monday morning and we left the hospital Wednesday morning. my parents stayed until Friday to make sure we were all settled in, what a blessing they are. It was so nice to know they were here with the kids. I could focus on Dave and didn't worry about the kids at all.
The first few weeks after surgery Dave did great. Almost no swelling, no headaches, no fatigue. He just wanted to get back to work. Then we had some issues trying to get him off of the steroids. Most of that story is in this post ~ ER. Then we had a second trip to the ER, described in this post ~ Flat Tire. I think with the combination of coming off of the steroids and the build up of chemo in his brain he is just a mess. He also started his first round of oral chemo the last week of February, he takes it for five days, once a month.
He is extremely fatigued, won't eat or drink and it takes me an hour to get him take his meds. He is not combative, he just keeps saying OK, I'll take it. Then fall asleep with his pills in his hands. We got some great stuff from Vemma, sort of like liquid vitamins, that I cannot get him to drink. If you could all continue to be in prayer for him we would appreciate it. We leave for Washington D.C. on Friday for a ten day vacation. I think we might rent a wheelchair so he can see everything without totally wearing himself out.
So the last month has been a challenge for all of us to say the least. We had a guest pastor today from San Diego. Pastor Jurgen was amazing, and as God usually does, his sermon spoke directly to me, to our trial. He spoke about breaking through. About persistence, continuing with prayer and praise and requests from God. He taught from Matthew 15. There is a woman who's daughter is demon possessed, she cries out to the Lord for help. When Jesus ignores her and the disciples try to send her away she continues to cry out. When Jesus said I came for the children of Israel she kneels before him and cries out for mercy, when he likens her to a dog she calls him master and says even the dogs eat the crumbs from the table. Then Jesus says she has great faith, then heals her daughter! Had she chosen to leave, or be offended at being called a dog and march away, her daughter would not have been healed. It definitely encouraged me to continue to pray for Dave's healing, regardless of how discouraged I may become, or what the doctors have to say. To press on, to have faith, to be obedient. I did the sermon no justice, but there ya go.
Dave goes for an MRI Tuesday, please pray for a clean scan. Thanks again for all the prayers and support.

P.S. Yay!!! He just drank his Vemma!

Bottom of the Second

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The week before his second surgery was a good week. I had spent 16 weeks struggling with "the peace that passes all understanding".

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7

I had a sense of peace but still wasn't at that point of transcending all understanding. My understanding was that I might lose my husband, and how could any good come of that????
About a week before surgery Pastor Juan spoke about letting satan curse us with our own tongue. It was almost an epiphany for me. I had been letting this go on for years. I was able to take my own thoughts captive, to stop the forever running tapes of "I'm a loser, ugly, fat, failure, etc." they've tried to sneak in a couple of times in the last two months, but I refuse to listen. I am a child of the most high God!

Therefore, there is now no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit who gives life has set you free from the law of sin and death. Romans 8:1-2

Also, three days before the surgery we were in Phoenix for his MRI. Now Dave is not a communicator, I on the other hand, can talk communicate all day.  there was lots of drive time, so I tend to ramble. I was going on and on about my struggle with true peace in this whole situation. Dave actually interjected several times with many words of wisdom. About having faith, him knowing all would be as the Lord has planned, and not worrying.

Who of you by worrying can add a single hour to your life? Luke 12:25

So in my passionate ramblings I said "I just want the peace that passes all understanding!" several times while banging on the steering wheel. I guess I finally meant it, because the gracious Lord granted it. From that moment on I have felt peace regardless of the "what ifs", or how Dave is feeling that day, or what the doctors have to say. I now have the faith to go wherever God wants to take us. What I want doesn't matter. I still pray for complete healing for Dave, but I know whatever happens, to God be the glory.
So Dave headed into surgery, he was grateful for the doctors who wanted to be aggressive. He was not into the wait and see thing, he wanted to fight as hard as he could. Both of my grown boys waited with me until surgery was over. They got to see him for a minute or two in recovery before they left. I was grateful for their support.
The surgery was successful, all tumor removed, as well as dead tissue from the radiation. Th surgeon said only healthy pink tissue left. They also placed 8 chemotherapy wafers directly on the tumor bed, the most allowed. Praise God!

Between Innings

Back to Dave's story. Like I said we had a wonderful Thanksgiving with all the kids home. This always fills my heart. It always seemed cliche to me, until my boys grew up and moved out. Now to have all my kids under one roof brings me more happiness and contentment than almost anything else. And the next few weeks were a nice break from treatments or doctors visits. The Phoenix doc wanted an MRI at three weeks after treatment, but the Sedona docs were not in agreement. They said this was too soon and could produce "psuedo-progression". The brain being so irritated by the radiation that it appears as if the tumor has grown. We were inclined to follow the advice of the specialists in Phoenix so an MRI was scheduled for a week before Christmas.
We enjoyed the break, preparing for the holidays, shopping, putting up the tree and lights. He was also working full time and thoroughly enjoying his job. He had his MRI and we went see the doctor in Sedona. The report said there was a small amount of tumor regrowth and lots of irritation and swelling from the radiation. He recommended we wait 2-3 months and have another one done. In the mean time we were to start his monthy chemotherapy, which was twice the previous dose for five days each month, for a year.

The Zanot Christmas Tree

Christmas came, which was wonderful. We spent the morning opening presents and the spent the evening at my friends house with her kids and some of her relatives and friends. She made a great Christmas dinner, which was a huge load off my shoulders, I wasn't sure I was up to the task. Then we all had a blast singing Glee karaoke! It was perfect, surrounded by friends and family, having a ball, just the way Christmas should be. Dave was feeling good and nearly back to a 100%. There was almost a sense of normalcy.

Lean On Me!

Lean On Me!

But we knew better, we knew this would be a long and hard fight, yet I still wasn't prepared for what came next. Two days after Christmas we went the specialist in Phoenix. She looked at the MRI and asked what the doctor in Sedona had said. Before we could finish telling they wanted to wait and see, she said no no no no no. You cannot take a "wait and see" attitude with brain cancer. If we wait and see and the tumor grows to the other side of the brain, then it becomes inoperable. She said she had seen pseudo-progression before and she did not believe his MRI showed that. This was tumor regrowth and we should operate again, now. She said had the surgeon she preferred been on call she would admit him now. She said not to be alarmed, it wasn't an emergency, but these tumors required aggressive treatment. And praise the Lord the tumor was in a place where they could afford to be been more aggressive. So plans were made for a pre-op MRI on Friday January 7th and surgery for Monday the 10th. My parents would come stay with kids and I would stay at Dave's Aunt and Uncle's home in Scottsdale.
All I could think was, here we go again. He was just almost fully recovered from the first surgery. Now they're going in again?

Recovery

Back to Dave's story. I really want to get caught up. This is a picture of him the day before we went home, after his first surgery. Like I said before, we had help from my sister and my parents. What I didn't expect was the amazing, overwhelming support of the community. I literally didn't have to cook for four months. Two freezers were given to us and are now completely filled with meat and veggies and prepared food. Officer Jackie from the department Dave retired from organized three fundraisers that raised an amazing amount of money for medical bills. Sergeant Kevin organized a softball tournament at the last minute that was awesome. And officer Stephanie made some awesome t- shirts and sold about 300 of them! A local auto body shop GAVE us their loner van to replace our totaled one. A local orthodontist GAVE us Molly's braces. It was overwhelming. I didn't know how to properly say thank you to these amazing gifts. We also received tons of cards, lots with checks included, unbelievable. Some of the people sending money, the last contact they had with Dave was being arrested! That is the impact he made on that city. After 21 1/2 years of giving to the people, they were now giving back. God is good. My provider. And they were all praying, friends, family, accuaintances, strangers, Facebook family. The support was amazing, and has kept us going. Please don't stop praying!
Dave recovered well but slowly. He had some major twitching in his hands that took a couple of months to go away, he did everything slower, walking, talking, eating. He went back to work about six weeks after the surgery, at the same time chemotherapy and radiation started. The first week proved to be too much and he ended up working part time during treatment. His main side effect of treatment was extreme fatigue. He had 33 radiation treatments. Monday through Friday for 6 1/2 weeks, and took oral chemotherapy every day for those 6 1/2 weeks. His last treatment was the day before Thanksgiving. We had a wonderful holiday with all of our kids and our oldest brought his girlfriend. It was a great and truly blessed day.

ER

I realize a lot of you aren't caught up with our story but I wanted to post about our trip to the ER Tuesday night. Dave is currently about 4 weeks post-op from his second brain surgery. He was only in the hospital 2 days and has been recovering remarkably well. He had very little swelling, little to no pain, and has been wanting to go back to work since he's been home.
We were sent home from the hospital with a schedule to wean him off of his steroids within a week or so. The steroids help keep the brain swelling down but they also wreak havoc on his body. Near the end of the schedule and just two days before our follow up appointment with the doctor, Dave just sort of checked out. He was awake and aware but completely apathetic to everything around him. Doc decided he was coming off the steroids too quickly and was suffering some brain swelling. The steroid dose was pumped up and then we began weaning again, but much more slowly.
He finally finished about a week ago. Monday he woke up with some swelling in his right eye. It was odd, so long after the surgery. He also had a headache, which he had not been dealing with at all. I waited and watched. Tuesday he woke up with his eye swollen shut and a bad head ache. I was concerned with brain swelling so I called down to Phoenix to see what the doc thought. I could only speak with the nurse and she said to see his primary care doc and if the swelling or pain got worse that we should head to the ER. The primary couldn't fit him in right away and said we should go to the ER so they could do a brain scan. He was feeling better so we waited. By the evening I decided we were going whether he agreed or not. He wanted to shower before we left and ended up passing out in the shower. He was out for just a second, and thank God, he did not hit his head. Just landed hard on his bum. We headed straight to the hospital. They got him in pretty quick, but of course they have none of his records or scans here. All of his care has been in Flagstaff and Phoenix. Doing my best not to be the rambler, I tried to put the last five months in a nutshell for the ER doc. He agreed and thought that the shower incident was probably not a seizure. Then they took some blood, did a scan and did an EKG. He said everything looked good, didn't think Dave would have to go back on the steroids. Which was my main concern. Then he spoke to the on call doc in Phx, who has never seen Dave, and he sent us home. OK. Little to no answers, four hours later, and a missed dinner. Dave's now exhausted and starving. Will call the doc in Phoenix and see what's next. Thanks for all your prayers.

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Catch Up

Back to our story.....my sisters and brother in law sat with me while Dave was in surgery. It turned out to be a very quick surgery. Only about an hour and forty five minutes. Which seemed really fast for what I assumed was a very carefully precise procedure. He woke up finishing a conversation he was having with his sister before surgery. That was very encouraging. He had 25 staples in his head, would've been great for Halloween, but he'd have them removed before then, dang it. The doctor did a great job following his hair line so when his hair grew back the scar would be covered. As the days went by the only things he seemed to be having trouble with were time-lines and he was a little shaky and slow. He couldn't remember if certain things happened last week or that morning, he still struggles with that a little now, 5 months later. The shaking, which was more like twitching lasted a while. We still don't know if that was from a medication or the surgery, or the seizure for that matter. And he was definitely in slow motion for a couple of months. He did everything slower, eating, thinking, talking, walking.
Two days after his surgery he pushed himself a little too hard and he had two small seizures in the hallway. Very scary, but praise the Lord he has not had another seizure since then. He is on meds, but I know a lot of brain tumor patients continue to suffer with seizures even after surgery and treatment. Two days after that, which is now six days from the accident, he was able to come home.
I am a crappy housekeeper. I am such a crappy housekeeper that it is the main reason I was hesitant for my sister to come help me with the kids. Thank God she ignored me and came anyway. Our bedroom was a maze of piles. Piles of clothes, newspapers, paperwork, and just general junk and crap. I am not a hoarder, but if I had no family to care for I am sure I would be one in the making. My amazing sister turned it into a real live hospitable bedroom in two days, with three not so cooperative children to care for at the same time. They were protecting their mommy's crap. Especially my oldest daughter, whom I've had more time to influence with my hoarding tendencies. But I had given my sister free reign to toss/give away whatever she wanted. And I promised not to complain or even ask about anything I couldn't find. So she did! Thank you Stephanie, I had a wonderful, pleasant room to bring my recovering husband home to.

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Brain Surgery

After the time of the surgery was decided and the room cleared, I remember looking down at Dave and saying, you can't leave me, and starting to cry. Of course he said he wasn't going anywhere and he would be fine. It was a weak moment for me, putting that on him. He needed to focus on healing, not on comforting his whiny wife.
We made lots of phone calls. His sister from Tennessee decided to come for the surgery. My sister offered to come out from California. I was having a very hard time accepting her offer, so she finally just said "I'm coming." My parents would come help after my sister left. I was still in a fog. Trying to decide if I should have Dave moved to a hospital in Phoenix. Everyone in Flag assured us this surgeon was great and we were in good hands. Dave was very lucid and he said he just wanted it done now, he didn't want to wait. So we stayed.
We spent the rest of the day making calls and arrangements and just trying to really grasp what was happening. I am still now trying to fully grasp our reality.
Day 3, Thursday September 9, 2010. Surgery was to be at 2 and he would leave for pre-op at 1. The surgery would only be 2 1/2 hours or so. They were planning a total resection of the tumor, but they would do a quick biopsy to confirm primary brain cancer and know how aggressive they should be. The tumor was in the right frontal lobe, a spot where they could be very aggressive and hopefully not cause any permanent issues with memory or speech or motor skills.
His sister was trying to make it before he went in for surgery, his brother and sister in law would be there as well. I was busy trying to make any last minute calls, and we were getting visits from the doctors and nurses who would be doing the surgery. One of them offered to show Dave his MRI and it was the first time Dave realized the size of the tumor. All conversations about him always involved him, but I hadn't had a car accident and a grand mal seizure and I was having a hard time taking it all in. He had not grasped the magnitude of the situation fully I don't think until he saw that tumor on that screen. He had been so calm, and remained so. But just as they were taking him away I saw the uncertainty in his eyes, for just a moment.

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Primary Brain Cancer

I stayed with Dave until about 3:30am. I had an overly dramatic and emotional run-in with the local police on the way home, but that's a story for another time. I made it home by 5:30 and slept for a couple of hours and headed back to Flagstaff. The kids stayed home that day with Gretchen. They were tired and stressed and I didn't want to push them.
Shortly after I got there we were visited by the neurosurgeon with his interpretation of the MRI. His first words were that it looked like primary brain cancer and he would like to operate tomorrow. Then he added that it is incurable and no matter how much brain he removes it will come back. It always comes back. He said all this as if he were reading his grocery list. Again, I acted as if I were just taking it all in, but this time my stomach did a little flip. Who am I kidding, it did a big fat ugly omg I'm going to throw up on this doctor flip. This was the first time the word cancer had been said. And I had no idea what primary brain cancer meant. The doctor with the oh so pleasant bedside manner explained primary brain cancer means that the cancer originated in the brain, it had not spread from somewhere else. He said it appeared to be glioblastoma multiforme, which is the most common, and most deadly type of primary brain cancer. I think my response was something like, um......OK....tomorrow? Dave was oblivious at this point. I found out later he was thinking it was a little tumor the size of a pea and they would remove it through his nose and he'd be back at work Friday. At this time I was finally beginning to understand the life changing nature of our situation. I saw the mass, it was big, about 2 in. by 3 in., we were talking major brain surgery with possibly major permanent side effects. Not to mention the whole "it always comes back" thing.

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