Our New Journey

On June 9th, my husband was feeling ill. He said that he was dehydrated and needed to go to the hospital for fluids. I mentioned to the nurses that I was concerned because he had seemed a little different over the past week. After a few tests, it was revealed that a tumor had taken up residence in his brain. A biopsy soon followed. As the surgeon talked about the results of the biopsy, the dreadful word "cancer" was born into our lives, changing it forever.

Through this blog, I will be sharing my journey.

Thank you all for your love, support, and prayers.

-Gilly

Tuesday, September 13, 2011

Here we go....again...


Here we go again…

So… In my last posting when I said that I thought the doctor was just guessing, I was right.

When we went to see his neurologist Monday, she was surprised by the new symptoms… symptoms that he had developed while in the hospital last week before being discharged. When they checked in with her about discharging Joe, they didn’t happen to mention that his facial muscles weren’t working. She was not amused. And certainly, neither were we.

The neurologist was quite perplexed by the possible causes of the new symptoms. She wanted him to go over to the ER and get admitted right away so that a series of tests could be run in order to get to the answer.  She explained that she could have the tests run as an outpatient, but it would take longer to get answers taking that route. Since it seemed quite likely that any tests would not actually be run until the next day, because it was later in the day, we chose to go home and make the journey in the morning.
Home we went. It was nice that Joe had time to prepare and pack as well as get a good night’s sleep.

This morning we went in to the ER and they brought us right back and got things in motion. The ER doctor listened to what we said and consulted with the neurologist. Things have moved slowly today, but at least they are moving. He had an MRI today around 1:00, and finally got a private room after he returned from the MRI. Unfortunately, the neurologist won’t be in to review the MRI until tomorrow morning.

After the results of the MRI, we’ll know the next step.

If the MRI shows a possible cause, then we’ll talk about treating it. If it doesn’t there are a number of other tests that will be run. Right now he is resting peacefully in a bed in a private room with a wonderful nurse watching over him.

On a humorous note:
Laura came to visit, and after she left she sent me the following text, “License plate holder of a car in the hospital parking lot says, ‘I see dead people.’ Not sure this is the greatest place for that car to park.”
Thank you all again for your prayers and love.
I’ll keep you posted!

<3 Gilly

Sunday, September 11, 2011

Expect the Unexpected

It's hard to believe that only a week ago a disruption in my plan for the next couple of weeks occurred. I had just been telling everyone how much I was looking forward to the next couple of weeks between the ending of radiation treatments and the MRI when I was going to take a mental break from worry, daily trips to radiation, and making sure chemo and all other pills were taken on time. Ending chemo and radiation seemed to be great timing. I was just going back to school and would have time and energy to devote to setting up my classroom and figuring out curriculum. I enjoyed this time very much ... all five days of it...

Things changed drastically last Sunday night as Joe developed scary symptoms and was taken by ambulance to the ER. Both the doctors we've talked to as well as friends who've dealt with this awful disease told me that things could change at any given moment. So the change was expected and unexpected at the same time.

It wasn't a surprise to me when the CT scan came back revealing that there was swelling in the brain because not only had I been told that it was a possibility, but because his symptoms fit that possibility. There are protocols in place to deal with such complications, so I trusted that Joe was in good hands, and I simply needed to wait and get information from the doctors.

As the neurologist came and checked Joe out the next morning, she confirmed what the other doctors had told me, as well as what I had been thinking even before he had been taken for the CT scan the night before. Joe was awake, but his body would not respond as he kept asking it to. He was so weak and looked so miserable. My heart ached for him. But the doctor seemed optimistic about increasing steroids to rectify the situation. Over the next several hours, I was hopeful as slowly strength and life began to return to my husband's uncooperative body. Soon, I thought. Soon I would be able to take him home and get back to normal life.

That was until another couple of days when the symptoms he had originally had melted away and new symptoms appeared. The left side of his face was numb and unresponsive, swallowing became difficult, and he had double vision. Joe was now able to get up and walk around, but these new symptoms had me worried. I didn't expect these. The nurse told me that it wasn't unusual and there were treatments to correct the situation. She was on the phone with neurosurgery until a doctor arrived to check on him and re-evaluate the MRI. He told me that after looking at the MRI himself and consulting with several other surgeons that he didn't think that there was something in his brain causing these new symptoms. Rather, the symptoms were more than likely a side-effect of some of the medications that he was on.

Of course, there is no blinking light identifying the cause in my husband's body. I know that the doctors are making their best guess unless there is a flashing light indicating a cause. However, I also know that all the doctors that have been caring for Joe, have a lot of experience to help guide them in their guesses.

Wednesday night, the surgeon told me that the next step would be to watch him for a couple of days, then do another MRI. So, Wednesday night I expected for him to be in the hospital for another couple of days.

Unexpectedly, I was able to bring him home on Friday. This by far was the best unexpected event. :)

Joe has enjoyed being home, sleeping in his own bed (even though that involves fighting for room from the dogs and cat), and eating normal food. He is working through learning to function with his new, unexpected symptoms, and doing remarkably well from my perspective. I know that he feels frustrated at times, but I think that he's doing splendidly!

I find it interesting how outside "Our New Journey," things have been unexpected as well. I can't remember ever beginning the school year with a rainy day schedule. And what a crazy day on Thursday with the wide-spread blackout!

The unexpected is going to happen because we can't predict or plan for everything. But we can be flexible and resourceful when it does arrive. What is it the Marine's say? .... "Improvise, Adapt, and Overcome." I think it's fitting advice.

Thank you again for all of your support and prayers.

<3 Gilly

Tuesday, September 6, 2011

When it rains, it pours...


…Literally

The title for this blog popped into my head long before the outline or structure of what I wanted to write. Some of you are aware that to describe the last few days of our journey as overwhelming would be an understatement. Some of you will find out why only just now. Recent events of this journey seem to have bottlenecked blocking the flow of information through this blog, and even FaceBook.
Before I detail what happened I will let you know that Joe is doing well. He wasn’t, but the important thing is that he is now.

Though it was only about a week ago that I had written celebrating the end of the chapter of radiation and chemo treatments (for a time anyways), it seems like much longer. An was MRI scheduled for the end of the month giving the radiation its time to finish killing what it could and Joe’s body time to process the dead tissue. With only a couple of doctor’s appointments scheduled between now and then, I was looking forward to a few weeks of mental rest. And why not? Everything and been going so well.

Until…

Sunday

Joe and I had a lovely breakfast at Jimmy’s in Santee, as is our Sunday morning tradition. He had a little headache, but took a Tylenol with his breakfast. We ran a couple of errands then I dropped him off at his dad’s house where the hung out and played with guitars.

I went off to school to work at preparing my classroom for kids to arrive on Tuesday. As usual, I was far from finished. It never seems to amaze me how it doesn’t seem to matter how early I begin preparing my classroom for students, I’m always working on it until the eleventh hour. I had so much to do. Physically my room was not organized the way I wanted it. I had a couple of tables that I had planned on purchasing on Monday from Ikea. I had tons of ideas of things that I knew I wanted to do with the kids, but didn’t have one minute of one day planned. It was a lot to do, but I do my most impressive work under pressure. It was early Sunday afternoon, and I had all day Monday… plenty of time…

Joe called me at school in the early evening after he had returned from his father’s house. He said that he had a “really bad headache.” With radiation, I knew that this was a possible side effect. He texted me a little bit later to tell me that it had gotten worse and was scared. So I packed up and headed home.
When I arrived at home, I could see that he was definitely in pain, but otherwise alert and himself. While trying to assess whether or not to bring him into the hospital, he vomited. So, there was nothing left to assess, I had decided that I would take him in. It took him a bit of time to gather himself enough to be ready to go. After coming out of the bathroom, however, his legs gave out. Luckily I was right there, and between putting his hand on my shoulder and the wall was able to help him to the couch. With that, I called 911 and requested that an ambulance take him to the ER.

After arriving at the ER another CT scan was ordered. It revealed that there was swelling in his brain. Dr. Spier had warned me that this was a possibility, so although it wasn’t great news, it wasn’t a surprise.
It seems that since we had tapered down the steroids (which were keeping swelling down) after his last radiation treatment, swelling in the brain increased to a level that caused complications.

Dr. Spier put him on an increased dose of steroids, and within a few hours he was doing much better.
I was very grateful that his dad, Andy, came to the hospital and was able to stay with him allowing me to leave for a couple of hours to get my classroom ready during the day. I still had the first day of school to worry about. If at all possible it was something that I really didn’t want to miss. The first day sets the tone for the year. Andy’s support made it possible for me to prepare.

Monday it was raining and that is where the title of this blog came from. As I stared out of the hospital window at the strange sight of rain falling in San Diego on an early September day I  took inventory of all that was going on with Joe and all that I wanted to do in my classroom. The phrase “When it rains, it pours” popped into my head like a pop-up window on a website. “Ain’t that the truth,” I replied back. Yes… I talk to myself… only myself, not other personalities in my head incase you were worried. …not that there are personalities in my head… I digress. Apparently lack of sleep is contributing… at least that’s my excuse.

Anyways… After that little internal conversation, I was able to see that not just the stressful, scary stuffy was pouring in my life, but like every chapter on this voyage, the blessings were pouring too. How fitting that it was a rainy day.

That night I made it back to my classroom with two tables to put together, finishing touches to take care of, and my day to formally plan. As I climbed into my car to head home, the clock on my dashboard read 11:09. It was literally the eleventh hour.

With help of many and including great care by the hospital staff, I was able to be present for my first day of class, not simply at school going through the motions while worrying about Joe, but truly present. I knew that Andy was there, and Joe was getting excellent care.

My first day of school started with rain, very strange. I like to think that God was reminding me that at the moment it seems that troubles are raining down, but blessings are as well. So many wonderful people helped me pull through the last couple of days. Every seemingly little thing meant so much!

As further proof of my theory, I received a call from his neurologist mid morning letting me know that the neurosurgeon thinks that he can now do surgery! He had an MRI today, and we’ll know more tomorrow. If the surgery can be done it won’t be for a couple of weeks.

Right now I’m sitting with him as he sleeps like a baby in his hospital bed. He looks so much more peaceful. Although he is sleeping off the medication that he was given to help him through the MRI, and not really aware that I’m here, it feels so very, very good to be here with him.

Thank you all for your continued prayers and support.

<3 Gilly