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

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

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

Last Radiation Treatment

I know that it's been a bit since I've written about our journey. I appreciate your patience and understanding. It's crazy how one day can turn into many days before you know it. It seems like just yesterday that I said good bye to my kids for the summer, and today I found myself back at school in a staff meeting. It also seems like just yesterday when we were struggling to find a way through treatments with the dreaded mask. And today I took Joe to his 33rd and last treatment. Where did the summer go?

Overall, I think that Joe has done very well during these many weeks of radiation and chemo. Physically the worst has been feeling tired, which is annoying and at many times frustrating, but mild compared to the many things that we were warned about.

Today we went to the last treatment. He feels like he really got zapped today. We were also told to expect the effects of the radiation will last over the next several weeks. So it is to be expected that he'll be tired, but  the radiation is still killing the nasty tumor in his brain. So, that's a good thing.

He has an appointment with the doctor in a couple of weeks, and he'll have an MRI towards the end of September. The images from that MRI will let us know how the tumor responded to the radiation and chemo. So, for the next several weeks we'll have a rest from appointments, medications, and as much as we love them, doctors.

Thank you for following our journey and sending you prayers and warm wishes. I feel like one chapter has come to a close, and we are beginning another one. I'm grateful for the period of rest ahead of us.


on another note...

I'm excited for the new school year as well. I'll get to enjoy a new classroom, new partner, new grade, new curriculum, and some new students (Since I'm moving up to 6th grade from 5th, I look forward to continuing with some of my students from last year).

My Birthday!

In yesterday's post I talked about perspective. And today was my birthday.

It started out with a wonderful ride on Payton after taking Joe to work. I did not make it out before the heat in east county, but it was a great ride. I was grateful to see Bree waving an ice-cold water in my direction at the end of my ride. After Payton, I rode Cinco, and had another great time. :)

Then I took Joe for his weekly labs to monitor his counts, and then to radiation. Getting him back from radiation, he was ready for a long nap. After getting him settled, I took advantage of the beautiful day in San Diego to spent some time on the beach.

The warmth of the sand and the hypnotic sound of the waves reminded me that even when things in my life seem to be spinning out of control, the world around me is still going on. When I went out into the water I found dozens of live sand-dollars! They are purple and fuzzy. They were so neat!

My wonderful sister had invited me to dinner earlier, but needed to postpone. "No worries," I told her. "It's my birthday month!" So, Joe and I went to Olive Garden. I was craving gluten free pasta and wine. It was delicious!

All in all, it was great to have such a wonderful birthday! Although a lot in my life has changed since June 10th, it was really nice to feel like some things are the same... ish... :)

Perspective

Last week I was blessed to be able to spend time at the IDEAS science training. As in an activity we looked at several pictures taken up close of everyday objects. Some were really difficult to figure out.

I've been thinking a lot about Cheryl's comment to my last post about not always being Polyanna. She really helped me put the situation into perspective. She reminded me that a couple of weeks ago I wouldn't be worrying about someone taking Joe to his radiation appointment because neither Joe nor I were at a place where we would allow that to happen. We have made it to another part of our journey.

Looking back at the week, we both made a lot of progress. Monday was quite rocky as Joe ended up in the ER because his vision went a bit crazy, but made it to his radiation appointment after his vision returned to "normal"and everything checked out okay in the ER. Throughout Monday I checked my phone about a billion times worrying about him. It was a big relief when Andy (his dad) texted me that he was home safe from the "ray gun" appointment.

I was nervous on Tuesday as well, not because I didn't trust Tony (Tuesday's driver), but because it was out of my hands, my control. Again I checked my phone continuously throughout the day, and wasn't able to breathe deeply until hearing that he was home safe. Wednesday was the same. But by Thursday, I was able to let go of that worry as I realized that I could let go of that control and things would be okay. At the end of the day on Friday, I realized that I hadn't compulsively checked my phone at all during the day. Even more liberating at that moment was realizing that I wasn't anxious about checking it. :) YAY!

Since the diagnosis, so many people from so many different parts of our lives have not only sent warm thoughts, powerful prayers, and encouraging words, but they've offered to help. Over and over, the offer has been, "... whatever you need..." The offers have been so kind, but I haven't known where I need help nor have felt comfortable letting go of some of the responsibility.

This past week was a great exercise in both. As Cheryl pointed out, we were both at a point where this opportunity could happen.  I had a training providing the purpose for such an opportunity as it created a need from which I asked for help and found out that it was okay not only in theory, but also in practice.

Perspective can make all the difference in processing a situation.

...just another day... kinda

Today was an interesting day. I don't think that "interesting" is the right word, but it was all I could think of...

This week I'm participating in a science training for school. It is every day from 8:00 to 4:30. Since the training happens during Joe's radiation appointments, some wonderful people have offered to take him to his appointments. Both of us have been a little nervous about this as it is out of what we had established as routine. Joe has still been going to work and has enjoyed tremendous support from the staff he works with. (Truly we are both so blessed in so many ways.) So, I dropped him off at work this morning, and the plan was for Andy (his dad) to pick him up for his appointment, then take him home.

This was a great plan until... his eyesight started going "haywire" in the early afternoon. He was seeing similar starburst type things as the first night we went to the ER. So, Andy took him to the ER to get checked out. It was not too long after they arrived that he began to feel a lot better. (I think it's kind of like when you take your car to the mechanic because it's making a sound, and it doesn't make that sound when you get there.) Anyways, they gave him fluids and did a CT scan to check for fluid build up in the brain.

Andy texted me when he went down for the scan because he wasn't sure if they would be out in time for what he called the "ray gun" appointment. I called the radiation center and let them know.

The scan came back normal (except for the tumor of course... but we all knew about that... this time). So they released him. The neurosurgeon did mention that things like this could happen after the surgery for the biopsy. whew! Big relief!

They made it to the "ray gun" appointment on time and then they went to dinner at Chili's.

Now Joe is home resting after his adventurous day and feeling much better. :)