Somewhere Over the Rainbow

Usually before I begin writing, I have an idea of where I want to go. A title will hit me or a theme where all of my thoughts begin attaching themselves. Tonight, this is not the case. I just know that I need to write. I've been waiting for a couple of days for some kind of theme to come to me onto which I can attach my scattered thoughts and and form some sort of flow of writing. A beginning would be nice, but I haven't even been able to find that.

So... here it goes... I don't know where it's going, but not knowing that does not need to be a reason to delay starting.

I took a break.

There, I said it. I did it. I took a break from being at home.

Last weekend, with the help and support of a dear friend, I was able to not just escape to the fabulous Galway Downs for a wickedly wet horseshow, but I had the honor of participating.

Liz owns an amazing off-the-track thoroughbred named Sue. She has taken her through a long, patient education process introducing her to her new job-after-racing. She has brought her along wonderfully on the flat and over fences.

A couple of months ago she asked me if I would be willing to show her at the November Galway. It would be her first "big show." In my mind, I thought, "Willing? I would be honored and excited!" I love the mare and very much enjoy showing and hadn't had the opportunity to show in a long time. At that point I had never ridden the mare, but had an idea that I would enjoy her.

Soon after Liz and I had talked about the show, Joe went into the hospital, and was diagnosed with Guillian Barre as if the tumor in his brain was not enough. So, a couple of weeks passed before I could get on Sue. Once I did, I felt an instant filling into a cup of joy that I didn't even know existed. Sue is by no means an easy horse, but that is one of the things I like about her. She likes to work hard and requires hard work out of her rider. I love her work ethic. She is not very tall (by my standards- but my horse is 18 hands so I know I'm a bit off from the average), but packs a powerful punch! Liz has done a wonderful job working with her, and she is a joy to ride. Even when she's throwing a tantrum, I enjoy her.

It was about the third time jumping her that I felt that I scratched the surface of her power. I approached two square oxers in a combination that she was a little afraid of. Instead of stopping or hesitating, she flew over them as if she had wings. Those watching said that she nearly cleared the standards. I know that many of you reading this have no idea what oxers or standards are (teachers... not the standards that we teach to...), but just know that we were quite high off the ground! From that moment on, I could feel that as long as I could stay with her and out of her way, we could jump anything! That is such an awesome feeling!

Riding her brought me a happiness in riding that I hadn't felt since before my horse, Payton, got injured. It's been a good two years since he's been consistently sound, and I've greatly missed the riding part of our relationship. Sue is very different from Pai, but brings me the same flavor of joy.

Since Joe's diagnosis, people have been encouraging me to "take care" of myself. I've done that as best as I know how. I've allowed myself to cry when I needed to, leaned on friends, walked on the beach, and things like that. Riding Sue and being able to participate at a show was a whole new level of "taking care" of myself. Instead of temporally relieving the pressure valve as the other activities, showing Sue filled me with something so much more, joy and purpose.

The show itself was filled with buckets of rain and slippery footing. There were many challenges that Sue and I faced just to get in to the show arena. Several times both Liz and my coach, Terri, told me that if I felt that she couldn't handle the slippery footing, to pull up. Each event certainly presented a challenge in making her first "big show" a positive experience. Having that permission made it easier to proceed. But Sue was not interested in quiting. She was certainly up to the challenge! Around each event she got better and better, ending strong and positively. It gave me so much joy to share that wonderful experience with such a fabulous horse.

I was surrounded by rainbows. The morning of the first day, there was a double rainbow. I had to take a feet picture. As I walked down to the start box on the last day of competition for cross-country, there was a rainbow over the course. Both made me smile.

While I was away at the show, I allowed others to help with things at home. It was hard to let go of responsibility, even for just a couple of days. I wouldn't say that I came home "rejuvenated" and ready to get back to the challenges of the our new journey. The show was a lot of work, and even though Liz took care of Sue and me most of the time, I was tired upon returning.

But I do feel like I came back better educated. I'm beginning to recognize that I not only can, but need to let go of some responsibilities. I'm seeing where those that have been asking for so long can step in and help. I'm finally ready. I'm grateful for everyone that has patiently waited for direction. Up until now, the only direction I could give was asking for prayer. I'm grateful for the prayers, and now I'm ready for accepting actions that so many of you are willing to give. Pamela and Cindy helped me see that. I'm thankful for Katy for organizing the help. Believe it or not, simply organizing who can help with what was just too overwhelming a task for me to undertake. I appreciate how Katy asked specific questions, then said that it would all just get taken care of, and she would organize it. I think that I only have so much capacity for organizing, and I need to use that energy for organizing Joe's schedule and care. My mum took it upon herself to not ask if I needed meals, she just started making them for me. She knows what I like. She's an excellent cook. And now I don't have to use energy to figure out what to eat. I'm grateful for Courtney taking over caring for Pai. It takes so much weight off my shoulders knowing that he is in her hands.

To Liz, I owe the biggest thanks for putting Sue and I together at the Galway, as well as Samantha and Andrew for opening Hotel McLean for us. I'm thankful for Terri for coaching me not just in riding, but so much more! I'm thankful for Debbie listening and encouraging. I'm thankful for encouraging words and hugs from Taren, Carolyn, and Margie. I'm thankful for dancing with Keelari, Laura, Gina and Andrea (almost Bec).  I'm thankful for the smiles and hugs from all the people I got to see at Galway this weekend. It was so much fun to dance, eat, and laugh. The couple of days amongst the incredible people who call themselves eventers reminded me of who I am beyond this journey. It was a big event with a lot of exciting things going on. And all of the excitement paled to the blessings of being surrounded by some of the strongest most caring people on the planet. (I'm sure that I've forgotten to menttion some)


I know that I'm not alone in my role in this journey, but until I allow others to help with their actions, it's hard not to FEEL alone. Being away for the couple of days helped me put things into a new perspective. I returned from the event with not only the wonderful memories, but a plan of empowerment and feeling better equipped to manage this leg of the journey.

Once again, thank you all for you love, encouragement, and prayers.

<3 Gilly

An Important Article on Fitness by David Haas

Fitness Helps With Cancer Treatments

No matter what type of cancer with which a person is diagnosed, whether it is a common cancer like breast cancer or a rare disease like mesothelioma, some course of treatment will be prescribed to treat the disease. Unfortunately, many of these treatments are very harsh on an individual's body, many times causing almost unbearable symptoms. Following a regular schedule of physical activity could help alleviate some of these symptoms and increase the patient's quality of life.

Fatigue is often a major symptom of most cancer treatments, especially chemotherapy and radiation. While it is a good idea for individuals not to overdo physical activity, inactivity has proven to be just as detrimental to their energy levels. Performing a low to moderate impact aerobic workout for a weekly total of 150 minutes has been shown to increase the energy level in patients going through any cancer.

Due to the decreased appetite caused by many cancer treatments, weight loss is another symptom, which should be addressed in cancer patients. Many times the rapid loss of weight results in muscle wasting, leading to further weakness and fatigue. To combat this muscle loss, strength training should become an integral part in any exercise routine for cancer patients. These exercises help to maintain and build muscle mass, helping to prevent wasting.

While some treatments cause patients to lose weight, the treatments for hormonal cancers such as breast have a tendency to cause people to gain weight. In these cases, regular exercise helps to keep excess weight off, in addition to building lean muscle and combating fatigue.

A diagnosis of cancer often brings about depression and anxiety. Studies have shown that exercise releases hormones in the body, which naturally elevates the mood. During treatments, keeping as active as possible can help with the feelings of despair that usually accompany such a devastating time in an individual's life.

Dealing with cancer and its subsequent treatments is a difficult time for anyone who is diagnosed. It is also difficult living with the side effects of the treatments meant to cure a person. By keeping active and adhering to a regular schedule of exercise, many of the symptoms can be lessened, leading to a more tolerable treatment course. 

By: David Haas

Living in the moment... even when it sucks!

"At the moment, the most important thing is the moment."  --Gillyism

Switching perspective can be difficult, especially when you don't want to.

Since June, I've been waiting for a reality in which I was willing to accept. I've been waiting to get to a point where I understand how to live, how to proceed with the new reality. I've been waiting to find a new "normal" that I could understand and accept. I've been hanging on to the idea that as soon as it appears, I'll be able to move forward into the new "normal" discovering and creating a routine as I go.

Until that normal appears, it's been difficult to define how to live. I can't go back to the way things were. That reality doesn't exist. I can't pretend that things are different than they are because reality keeps smacking me in the face. I've been watching for signs of the next big event to tell me what to do next.

I don't think that we've really had a moment to breathe. When I think back, since June it's been one thing after another. Since the word "tumor" entered our world so personally, our world has been so very different (as is expected). Then Joe was hit with Guillain Barre. We've been hoping for a time where he is able to feel a little more like himself, where physically he has freedoms that he once had.

Though my patience waiting for his quality of life to improve is still there, my energy is not. I'm trying to now deal with and accept reality while waiting for improvement, and that is different from my past mindset. I was not worrying about accepting something that I was certain would soon change, I was just dealing with each fireball thrown our way while keeping an eye on hope. As things haven't changed for the better, it has become increasingly difficult to use that coping strategy.

"Living one day at a time" worked for me for most days... until I was hit with one fireball too many, and in that moment the ugliness of the reality was quite visible. Up until then I had been able to close my eyes to the ugliness, but a moment came when it was like my eyelids were held open, forcing me to not just see, but examine every detail of ugliness. I told myself, "one day at a time..." And that was when fear crept in as another voice in my head started reminding me that I had been living that way for a long time and on many occasions, the day I found myself in was a day of crisis. And I began to fear tomorrow.

I found myself sitting watching control of my emotions flow through my fingers as I tried in vain to gather them up. I began to wonder what the trigger was. I began to try to understand and reason my way out of the room of ugly emotions that I found myself trapped in. I wondered why during the first week of kids arriving at school when Joe had been taken by ambulance and spent the next two weeks in the hospital I was able to juggle the hospital and school in a way that I felt was pretty emotionally balanced. I remember taking the dogs for a walk late one night after spending the day at school, and the evening at the hospital. As I was walking with them, I was aware that I was exhausted. I was worried about Joe. And I clearly remember wondering how I was holding it together. I wondered where the tears were. I wondered why when at school, those that knew what was going on would give me a hug and tell me their prayers were with us, and I didn't fall apart and cry on their shoulders. "How am I doing this?" I remember clearly asking myself.

So, it was quite perplexing to me why when there was no immediate crisis happening, that I was falling apart. "If I could handle things then, during such a crisis, why not now?"

It is true that at that time I had been recovering from a cold, and I didn't have the strength that I usually have, and that may have contributed. But as I analyzed possibilities further, I began to wonder if the idea of crisis had something to do with it.

At the moments when I had to move forward and literally take things moment by moment, I could handle things. I didn't have room for the emotions because I was focused on the crisis. As I was sitting in my pool of emotions, I realized that I wasn't in a crisis situation, but it had become normal for me to be in crisis, and without an actual crisis to hold my focus, I was vulnerable to seeing the reality of the situation.

A few days later, I was talking to dear friend who is also going through supporting her partner through battling this awful disease, and the idea of crisis came up again. I realize that a year ago, before this diagnosis, many things that we encounter on a daily basis would fall into the category of crisis. I don't think that humans are wired to live for so long in such a state. So, it came to my attention that I need to reevaluate my criteria for defining a crisis and thus decide more carefully on things that need that type and amount of my attention.

One of my first posts talked about figuring out how to live in this new reality. Waiting for a reality that I want doesn't seem to be working. I need to learn to make the most of the reality while it is the reality, waiting is not going to make it better. Making it better while I'm waiting is in my control and worthy of my energy. (I put that in bold to remind myself and hopefully find a way to put it into action.) Of course I also understand that in order to make the best of the moment, I must understand and accept the moment.

Thank you as always for your love, support, and prayers.

Gilly

Recovery

This past month can be summed up by Joe's neurosurgeon, "Boy, you've had quite a rough month!"

I know that I've left you hanging a bit on Joe's progress. I apologize for that, but I also know that those of you reading this understand to some extent the possible reasons...

There are two main reasons:

1. Tired... I was just incredibly tired... between hospital visits, worry, and working 
2. As many of you know, I use writing to gain a manageable perspective. Writing has been my best counselor. As things settled down, I was not in immediate need to write to process what was going on.

Thank you for understanding

Catching you up...

Last I wrote, Joe was back in the hospital, and we weren't leaving until we had an acceptable answer to what was causing the issue with the loss of being able to use his facial muscles. After two MRIs (including one very detailed one) and a spinal-tap, the neurologist believes that he has developed  atypical Guillian-Barre syndrome. It's an autoimmune disorder where the body attacks nerves sending signals to muscles. The doctors wonder if when he went into the hospital after collapsing the first time, it was an onset of Guillian-Barre. We'll never really know. While in the hospital he received 5 infusions of IVIG.

He is home, and has been home for the pas couple of weeks.

We met with the Neurosurgeon this past week. Upon reviewing the MRIs, including the most recent taken on the 30th. He said that the swelling and fluid on the brain had gone down and looks stable. When he told the neurologist that he could operate, he was talking about taking out part of the tumor to help with the pressure in the brain caused by the fluid. As he began explaining the risks of surgery (loss of vision, writing, reasoning, and several other losses), we both began to feel like risking surgery to debulk the tumor isn't worth the risks at this time (especially since his system is still recovering from the events in September). The surgeon said that he is always there if and when we are ready for that option.

Current Plan:

In the middle of October- Another round of IVIG treatments
Two weeks after last IVIG infusion begin another round of chemo

We are taking it one day at a time.

Thank you so very much for your love and support.

Gilly

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