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, November 15, 2011

God Doesn't Give Us More Than We Can Handle... REALLY?

How many of us wish that we had a dime for every time we heard "God doesn't give us more than we can handle" as we are going through tough situations. How many of us have said it ourselves to a loved one while searching for comforting words? It is comforting to believe that eventually the trial will end you'll be okay on the other side.

A couple of years ago while searching for comforting words to offer a friend I examined that saying more closely. I asked myself, so what if someone is strong enough to endure, does that knowledge or belief really make it easier? Does it take away the pain? Does that mean that stronger people are destined to endure more difficult trials simply because they are stronger? How is that fair? Who would want to be stronger if only to endure more pain? Suddenly this saying meant to bring comfort seemed to be doing the opposite.

As I thought about this saying, I searched for the positive. Finally it hit me... Maybe that saying is not true after all. Maybe God does give us more than we can handle. Maybe we are given more than we can individually handle so that we are given the opportunity to lean on others. In this thinking I came up with my new belief.

I believe that in life we are given more than we can handle. As we are pushed beyond our individual capacities for surviving life's trials, we lean on others when we wouldn't otherwise. As a result both parties are blessed, both the giver and the receiver. Acts of kindness are born out of love. I believe that God exists is in that love.

I have felt much more comfortable in the giving help side of that relationship than in the receiving part. Through this journey, I have certainly been forced into a place where many times I cannot walk on my own two feet, and have had the blessing of leaning on others. As the weeks and months have passed, I've felt more wobbly, but not really known how to reach out. I know that it sounds silly as so many of you have offered to help, sometimes specifically, sometimes generally, but the offer has been made hundreds of times since the beginning of this journey. Often as people have said, "Would you like me to..." my response has been, "No thank you, I've got it." As I wrote previously, it's easy to feel alone when not accepting help of others. Much of my feeling of aloneness has felt paralyzing, where I've wanted help, but hadn't known how people could help or even simply saying, "yes," when help is offered.

Slowly I've been figuring it out with the help of loved ones. As specific help is offered, I've been better at saying, "yes." One thing that has helped me has been when I've thanked those who've helped, they've frequently responded with gratitude in allowing the help. And that is where his idea of God's existence living in the love fueling these acts of kindness resurfaced.

I also know that through such trials we have opportunities to grow that we wouldn't have otherwise. Without such adversities, how would one grow? What would life be like without such growth? Thank goodness we have each other to lean on through these pains.

Thank you to all of you who've helped both Joe and I stand when we've been too weak to stand on our own. <3

Gilly

Sunday, November 13, 2011

Thanks for the Umbrellas

As it poured down rain yesterday, the title "Here Comes the Rain Again" popped into my head. But then I thought about the wonderful kindness shown to both Joe and me this past week through the most recent trial, and I thought of umbrellas. Umbrellas that give shelter from the rain.

Joe began a round of oral chemo Nov 1st. The plan was 5 days of chemo this month. Then 5 next month, and so on. We will be altering that plan.

As the days went on, the more tired he got. This was not surprising. I know that chemo is poisoning the body as well as the tumor. I know that this isn't easy for the body to take. So, I wasn't too concerned until I arrived home from work Monday. He complained of a terrible headache and was asking for pain pills even before I put my school bags down. I gave him the pain pills, then noticed that he hadn't taken his morning pills. One of the pills is a steroid. The headache made sense knowing that he had missed the steroid. I gave him the steroid, and asked him to take it. He did. This was unusual because he had been getting up and taking them religiously for so long.

The next morning, I brought him his pills before I went to work. I tried to wake him and ask him to take his pills. I told him that I was worried about his brain swelling if he didn't take the steroid. He would open his eyes, stir, and say that he was trying, but I couldn't get him to wake long enough to take them. I had to go to work, so I left them on the nightstand beside the bed. When I got home, they were gone, and he was on the couch. So, I hoped that he had taken them.

This routine occurred Tuesday and Wednesday. On Wednesday, I called the nurse to see if she thought I should bring him into the ER. She said that as long as he was cognitively aware, keep him stimulated, but I didn't need to bring him in. When I arrived home on Thursday, he had another painful headache. I gave him pain meds and asked him some simple awareness questions. The only thing he seemed to be aware of is who I was. So I told him that we needed to go to the ER. I tried for about an hour to get him to go to the car. He was too confused to follow my directions. So I called 911. The paramedics arrived, asked him more questions, and brought him down to the ambulance.

After admission in Kaiser ER and a CT. It was revealed that he once again was suffering from swelling on his brain. He was admitted that night... well really it was 6:00 AM Friday morning.

The neurologist examined him in the morning, and after talking to his neuro-oncologist decided on a course of steroids. She didn't put him on the same massive dosage that he had been on in early September, but more than he had been currently taking (or not taking). With this came the understanding that it would take longer for the positive effects to be felt, however he wouldn't have as far to step down once he stabilized. He spent Friday pretty confused. He just wanted to rest on his side and not be messed with. He didn't understand why nurses kept coming in stabbing him with needles.

On Saturday, he was feeling better. He woke up in the hospital before I arrived in the morning and didn't know why he was in the hospital. He called me which was a good sign. Later Saturday, he took a walk around the nurse's station, and I was comfortable taking him home as long as he agreed to take his meds. He wanted to get out and promised to take his pills.

We've spent a quiet Sunday at home. He has asked several times about his pills. He made sure that he had taken what he needed to take. This was good for my heart. One of our neighbors came over for a bit, brought lunch, and watched some football. Later, his dad stopped by for and hung out for a bit as well.

Joe has still been a bit confused about time today, but has been so much more himself. The doctors and nurses at Kaiser were patient and kind through his stay. They took excellent care of him during his stay. My friends and family took wonderful care of me. I am so grateful for the love and support. It is so nice to know that we are not in this journey alone. It's nice to have an umbrella when it's raining.

Tuesday, November 8, 2011

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

Thursday, October 27, 2011

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

Sunday, October 23, 2011

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

Sunday, October 9, 2011

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

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

Monday, August 29, 2011

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).

Monday, August 1, 2011

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.

Monday, July 25, 2011

...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. :)

Saturday, July 23, 2011

Not Always Pollyanna

I've been trying to spin things in a positive light. Every time shit happens or I feel overwhelmed, I look for the silver lining. I look for the lesson. I look for where and how God is molding crappy stuff into useful, beautiful pieces of art. I'm really good at this, and I'm thankful for that gift. But is that always realistic and the best course of action? I'm not saying that it's a bad thing to do to look on the sunny side of a situation, but at some point the not-so-sunny side needs to be acknowledged because it's part of the situation too.

For days I've felt a welling of sorrow in my throat. I know that keeping busy helps keep the tears away, as as I've been busy, they've stayed away. But there have been moments when I've been in a safe place to let them come. Several times they've seemed to start, but for one reason or another, they stopped. I think that I was trying to pin down a specific reason before allowing them.

Finally tonight I was out with the dogs...alone...and I felt the tears knocking at the door again. I told them it was okay to come. I was in a safe place where I wouldn't cause anyone alarm, and they wouldn't be stopped. As I felt my eyes begin to fill with water, I felt sorrow. As I allowed that feeling to stay, I realized the cause... loss.

The news of the tumor meant a loss of a life as I had come to know it in so many ways. I so feel for Joe as he has certainly, at least for a time, lost so much of his life as he knew it. He has lost not just his short-term memory and energy, but so much more painful has been loosing a sense of independence and confidence. Simple decisions and tasks we both took for granted have now seemed like huge mountains to climb. I miss the freedom that we both enjoyed, and now, at least for a time, is gone. So now with a specific cause for the sorrow, the tears finally came out.

With those tears for the current situation came more tears of loss from the past. I didn't filter. I didn't discriminate. I didn't judge. I just let them come.

Then, finally they stopped. They were done. I took a deep breath and finally sat in peace. Not in happiness, not in contentment, but no longer feeling like I had a bounty of tears chomping at the bit to burst out.

I hesitated to share this writing in the blog because I'm trying to keep things as positive as possible. But this too is part of the journey. And I know that readers of this blog are kind, compassionate, and will understand completely.

Thank you all so very, very much for your prayers, encouragement, support, and most of all... your LOVE.

Gilly

Thursday, July 21, 2011

Success with No Drugs!

One week ago today Joe started his radiation treatments. He started his first treatment taking two valium. That was what finally helped him go through the CT scan while snapped to the table in his mask. Since the first treatment went so well, he's been taking less and less of the valium.

...and today he made it through with NO VALIUM!

I think that I needed a valium today as I waited in the waiting room. He was gone for much longer than usual. I was worried that he was having trouble. It turned out that they were taking some x-rays and it was a little longer treatment. Whew!

Then we met with Dr. Tova, his radiation doctor. She was just checking in on him and seeing if we had any questions.

Thank you again for all of your love and prayers!

Gilly

Monday, July 18, 2011

Beginning the First Full Week of R & C

After a restful weekend, Joe's first full week of enduring both radiation and chemo has begun. Tonight he only needed 1 of his anti-anxiety meds. Tomorrow he'll try half a tab. Each time gets easier and easier for him. It will be good when he can go in without the anti-anxiety meds. They are really messing with his cognition.

Tomorrow we will meet with his doctor.

We are certainly feeling in good hands.

Thank you all for your thoughts and prayers.

Thursday, July 14, 2011

1 Down, 32 to Go

Tonight Joe successfully underwent his first radiation treatment. He did it with the help of anti-anxiety meds, but he did it. He came into the waiting room from the treatment saying that it was a "piece of cake." That was really good news because he has 32 more treatments to go. He will be going five times a week (Monday through Friday) for the next several weeks.

He said that it feels like a huge weight has been lifted as it seems that he is taking an action towards getting rid of this pesky tumor. I know that it always feels better to be actually doing something rather than waiting to do something.

I know that many of you have been doing something for us since you first heard the news. You've been praying and sending positive thoughts. And I know that has helped and continues to help. =)

Wednesday, July 13, 2011

Mission Successful!

Tonight was Joe's "dry run" for radiation. We were a bit nervous. As we arrived at Radiation Medical Center, he had taken his anti-anxiety meds but was still feeling anxious. There were a couple of tense moments sitting in the waiting room after he scanned his card letting them know that he was there.

I know that it didn't take long, but it felt like we were waiting quite a bit of time before a man in brown scrubs came to the door and called him through. Joe followed, and I held my breath. I checked my texts and tried to play some games on my phone, but I was too nervous to concentrate. I found myself staring blankly at the tv in the waiting room. One of my favorite movies was playing. For a few moments, I found myself lost in The Music Man hoping that things were going well behind the door.

Joe walked into the waiting room. Briefly my hear sunk thinking that he hadn't been gone long enough to have had a successful mission. I asked how it went, and he said, "not bad." He said that it was really quick and easy.

Yay!

As we left, we walked away with a schedule for 33 treatments. The first one begins tomorrow night.

Thank you all so much for your prayers, support, and encouragement.

Tuesday, July 12, 2011

Prayer Quilt and Prayer Square

Yesterday we received a unique and touching gift.

Word at the horse stable spread about Joe's tumor, and it was wonderful to receive the support from everyone as I began to return to the ranch on a more regular basis. It was so touching to speak with fellow Willow Glenners as they offered support and encouragement. I really appreciate kindness as people asked me what we need. I truly feel more than anything, we need prayer. I know the amazing power of prayer, and it may seem like a simple request, but for the moment that is what I feel we need the most.

After telling Joe's story to one of the boarders at the ranch, she asked if she could have her church make Joe a "prayer quilt." I humbly said yes. It sounded like such a lovely idea, very touching.

It came out beautifully and with a card giving information and instructions. On the quilt are a number of knots. Here is what the card says:

"Each knot is a prayer that has been said for you. More prayers may join those already in this quilt. As a friend, relative, doctor, nurse, or visitor wishes to pray for you he or she may tie another knot over one already made, giving you more visible signs of God's comfort and love."

I have decided that when someone writes, texts, calls, or face to face tells me that they are thinking about us I will tie another knot.

In addition to the quilt, the kind people from "The Prayer Quilt Ministry" at St. Mark's Lutheran Church also made me a prayer square.

Tomorrow, Joe will be going through a "dry run" before his first radiation treatment. The doctor wants to line everything up, take and xray and make sure the radiation is hitting the right places and missing the right places. Hopefully everything will go well.

I will post tomorrow and let you all know how it went. Thank you for your prayers.

I love the prayer quilt and the prayer square. They are both as the card says a "visible sign of God's comfort and love."

Monday, July 4, 2011

Independence Day

Today our nation celebrated the signing of the Declaration of Independence as well as the struggles and sacrifices that bought our independence and has ensured our freedom over the years. I've been watching a series on the History Channel called "How the States Got their Shapes." It has been interesting learning how rivers, railroads, alcohol, politics, and so many things formed the states into the shapes we know them as today. As the host of the show has gone from state to state, one of the themes that has come up is an independent spirit.

There is strength in independence. It is that strength that helped the early colonists survive. Certainly an independent spirit is what spurred the once separate colonies to unite together and declare independence from Britain. Pioneers heading west also had to have had such strength. Clearly an independent spirit shaped our nation.

As much strength as there is in independence, I think there is even more strength for one who is independent to ask and accept help. Both Joe and I recognize that this journey requires more than the strength that God has given our independent spirits. It requires more than what the doctors can provide. We would be foolish to turn down the help that so many of you have offered.

Over the last few weeks I have found the strength to pick up the phone when I've needed a pep-talk. I've found the strength to admit that things are not okay. I've found the strength to ask for help as well as prayers.

Joe has found incredible strength in allowing me to help him. Since the biopsy, he has felt "fuzzy," and has allowed me to be his "personal assistant" (a title I've given myself).

We sincerely appreciate each offer of help. I know with such a situation, it is difficult to feel anything other than helpless, or that what you are able to do or offer is far from enough. We want you to know that every meal, hug, up-lifting word, call, and prayer has helped immensely.

We are so grateful that we don't need to go through this independently.

Thank you,

Gilly

Friday, July 1, 2011

Celebrating Normality (Laura's word)



Several years ago I developed a lunch ritual that I found comforting. Although in many aspects of my life, I've enjoyed the spontaneous and unexpected, I've taken comfort in preparing and eating my lunch, doing the same thing, the same way, over and over again, day after day. It's one aspect of my life that I can easily control and take comfort in predictability. 

Today Joe went off to work like many days before June 9th. All that was planned for him today was a nice, normal day at work, no doctor's appointments, no tests... just work. 

It has been a lovely day. After seeing Joe off to work, I met my dear friend, Tara for a wonderful walk. From her house, we walked towards Balboa Park via Starbucks. We walked to the fountain then over the bridge and through the rose and cactus gardens. We stopped to smell several roses. Tara was an amazing listener (as always) as I talked about recent events with Joe's struggle. She has such a great way to put a positive spin on each aspect. I am so thankful for all the positive people in my life that help me keep a healthy perspective. 

As we made our way back, walking past the zoo and through the Spanish Village, we talked about favorite memories of childhood moments and explorations of the park. As our two hour walk came to an end, we talked about looking forward to next year's classes. It was so nice to have a long, positive talk. I'm so very lucky. 

After running a few errands, I found myself at home where I made myself my favorite lunch, PB & J crackers.

So, today was a delightfully normal day. And we have a delightfully normal evening to look forward to. 

Thursday, June 30, 2011

Fourth Time's a Charm

Today Joe was able to get the CT scan completed in order to map out a plan for radiation. YAY!!!

It had been a rocky bit of time for us. Luckily emotions are temporary.

As I mentioned in the previous post, yesterday the doctor sent us home with the mask to practice with before today's appointment. Joe took quite a bit of time to sleep through the anti-anxiety medication before he was ready to work with the mask. This turned out to be a more difficult task than I had anticipated.

Joe started by simply setting his mask on the coffee table while he was watching TV. Then we moved to the bed. Of course our high density-foam mattress did not quite give the same effect as the harshness of the table he would have to endure for the scan. We worked for quite a bit of time trying to prop towels folded just right under his neck so the mask would fit on his head in a similar way to the way it fits on the table.

Since our appointment was this afternoon, and Joe still didn't seem like he had become one with his mask, I urged him to stay home from work and work at it through the morning. This wasn't difficult to do since he was still feeling the effects of the high dose of anti-anxiety meds from the day before.

After he awoke late this morning, ate breakfast, and showered, it was time to try it again. However both frustration and fear seemed to be the prevailing emotions for both of us. I worked at staying calm and supportive, yet I also felt a need to keep at him to work with it because he was reluctant to keep going since we couldn't more closely replicate the environment. Yet I told him that it was better to do what we could with what we have than doing nothing and expecting different results.

Yesterday I talked about celebrating taking small steps towards a goal. But with the appointment time rapidly approaching, I feared that the steps taken were not enough. I called his radiology doctor. She was very supportive as we talked, and we decided that he needed to try a different anti-anxiety drug.

We arrived an hour early to take the first pill. The doctor told me that in 30 minutes if he seemed to need another one, give it to him. I asked her how I would know. She said, "Poke him. If he responds, give him another one."

So, we found a lovely bench outside in the shade where we sat and waited. It is so nice to live in San Diego. At the 30 minute mark, I did poke him in the arm. He looked at me as if to say, "Why did you do that?" With that expression, I figured that he needed another dose. Luckily, that seemed to do the trick.

In the room he was a champ. He settled quietly on the table and allowed the mask to be first placed over his head, then snapped down. Once he closed his eyes and became one with the table and the mask, everything went well.

As I saw him settle down into the table and close his eyes, my feelings of frustration and fear melted away to joy and relief. I know that these positive emotions are temporary as well. Knowing that, I will enjoy them while they are in my company. At the same time, when the not so positive emotions are around, knowing that they too are temporary will also help me to endure.

Thank you so much for all of your prayers and support!

Wednesday, June 29, 2011

Several Steps Closer...

Thomas Edison said, "If I find 10,000 ways something won't work, I haven't failed. I am not discouraged, because every wrong attempt discarded is another step forward."

Today Joe was not able to get his head scanned today. He did do better than he had done last week. I definitely think that the steps we added (hypnosis and changing anti-anxiety meds) certainly helped. He didn't get to the state of absolute panic that he had been in before. However, the scan still did not happen.

He worked at it for an hour. Although the scan did not happen today, he is a lot closer than he was this morning. They let us take the mask home today and practice.

So that is what he is doing right now. He is practicing on the bed. We've propped up his head and made a make-shift tunnel. We don't have everything there is to replicate the situation, but we are doing what we can. The mask has been shaped to be a bit more open, and we have decided that it is his "battle buddy." He has named it Jason after the actual battle buddy that he had while in the Army.

In this situation, it is easy to have a defeated feeling. However, I am choosing to look at it the way Edison looked at much of his attempts before finding success, not as a failure, rather simply as a step toward a solution.

When possible, I like to take a "do what I can do towards the situation" attitude. When the path in-front of you is complete darkness, it's impossible to see your way without special equipment. However if you know the direction, you can carefully take a step. Even one, small step is progress. You can then gather yourself before taking another step, literally putting one foot in-front of the other. Positive is positive, no matter how small the amount.

Today, Joe progressed many steps towards completing the scan, and that is what is important.

Tomorrow is another day, and he will give it another try. Wether or not the scan gets done, he will have several more steps in the positive direction of his goal.

Tuesday, June 28, 2011

Mind over Mask


Thank you all for the wonderful thoughts from my last post. Our current hurdle has to do with this mask.

Last week we met with the doctor again to find that the pathology report came back and the cancer is a grade 2. However, MRI images suggest the possibility that grade 3 or 4 exists beyond the samples that the neurosurgeon took. Not taking any chances, Joe will be going ahead with treatment as if nastier stuff is in the tumor. This will mean 33 treatments of radiation (at 5 times a week) and oral chemo simultaneously.

As you can imagine, we are both anxious for this treatment to begin. We have one little problem...

The picture above is the mask that he needs to wear for a CT scan to map out the path of radiation so that it hits as much of the globby tumor as possible and as little of the important brain cells as possible. After the mapping of Joe's brain, he will wear the mask for each of the radiation treatments.

The problem with this mask is that it needs to be bolted to a table with Joe in it. As you may imagine the very thought, let alone the act, of being bolted down to a table by his head is far from appealing. It seems to have evoked a primal urge of needing to survive prompting Joe to freak out as soon as the mask is on his head. We've tried two trips, both with high doses of anti-anxiety medication. Neither were successful.

Tonight we met with a hypnotherapist, Priscilla Jaynes, and I am very optimistic about tomorrow's appointment. She spent a long time talking to us, getting to know Joe and the struggle ahead of him. She was kind and reminded him that his fear is only his body trying to protect itself from perceived danger, danger the brain senses at a subconscious level. After a long discussion, she proceeded with hypnosis. Through the hypnosis, she gave him tricks to distract the mind. She told us that the mind will only be in one place at a time, so she had him create a very vivid image of going on vacation with his beautiful wife to pull his mind out of the mask and to a much better place.

She have him many other helpful suggestions as well, not just for dealing with the mask, but dealing with the tumor. I got to listen to the session and came out very relaxed.

Joe is now home really relaxed, and has directions of listening to the CD of the session over and over again tonight.

Tomorrow we have another appointment with radiation. I am hopeful that between unlocking some of the power in his mind as well as trying a different anti-anxiety medication that he will be on his way to the next step of his recovery.

Saturday, June 25, 2011

Dear Friends and Family,

This is a little long, but I wanted to share part of our new journey with you...



The Power of Your Love
Overwhelmed…
Overwhelmed… that is the word that best summarizes recent days of my new “normal.” Usually, writing is an outlet for me. It’s a place where I frequently find myself reflecting, learning, and creating. Writing has always been a place where I go to process things I don’t understand, things I need to further explore, and things that leave me feeling overwhelmed. I’ve found that if I tackle the issue like a knot, finding a little piece I can grasp tightly enough to begin to work loose, little by little the knot unravels revealing an understanding. Over the past 13 days I’ve been looking for that piece. Many times I’ve thought that I’ve found it only to feel it slip away. Or I have been too afraid to begin unraveling the knot fearing the reality that I would find under the mess of tangled information and emotions that I’ve not held tightly enough to begin the process.

One piece that I’ve found to hold on to is the amazing love pouring our way. And so it is with your love that I’ve found a place to begin to truly process all that has come my way over the last several days.
That Thursday night that I took Joe into the hospital for symptoms of dehydration I first posted on facebook that the doctor had decided to order a CAT scan based on a little comment that I had made when the nurse took him back to get his vitals. That was where the first outpourings of love came in. Some of you that were up through the night and saw my post sent their well-wishes. I thought the doctor was being overly cautious until he returned at 2:30 Friday morning after the scan to tell us that neither he nor anyone else that looked at the scan had ever seen anything like what they were seeing in his brain. He said that it could be nothing, but wanted the neurologist to take a look, and he wouldn’t be in until 5:00 in the morning. This was not good news. You don’t ever want to hear that there’s something strange in your brain.

Knowing that there was nothing to be done until the morning and fearing a long day ahead in the hospital, I went home to take care of the dogs and cat and then to school to prepare for a guest teacher the next day. Unfortunately the next day at school was not a typical day because of Lunch on the Veranda and an unfinished art project that needed to be completed before the lunch. Without sleep, I gathered what I could and wrote plans hoping that they were clear enough for the sub to read and follow. I also emailed a few key people on campus hoping that if my plans didn’t make sense, they could help. In the email, I explained that something “strange” had been detected in Joe’s brain, but I wasn’t “freaking out.” I mentioned that a couple of times trying to convince myself to not freak out.

I returned to the hospital to find that Joe had gone for an MRI while I was gone. Sometime in the morning the neurologist came in and changed our world. He brought up the MRI images on a computer and showed us where a large tumor had taken up residence right in the middle of my husband’s brain. It took a bit for the word “tumor” to register. There was no doubt that a biopsy was necessary to determine what we were dealing with. The only question was how soon he would be ready for such a procedure. After a bit of processing time, discussion, and the arrival of Joe’s father, he decided to go ahead and get the biopsy done as soon as possible. That meant Saturday. Joe was admitted shortly after our decision. (I say shortly meaning in “hospital” time.)

Since his dad was at the hospital for support, my dogs and cat needed care, and Joe needed some items from home for his stay, I went home. I also needed a shower and to make a couple of phone calls to help me process what the neurologist had just told us. I don’t remember the conversations that I had with people that I called, but I do remember the love, and it was the love the washed over me. As refreshing as the shower was, it was the love that fueled and refreshed me allowing me to keep going.

Over the next couple of days during Joe’s stay in the hospital, the nurses took excellent care of him. And you, my friends and family, took amazing care of me. Each person I talked to via phone, text, and facebook seemed to know just what I needed to hear. As helpless as you all felt, your words and love helped more than I can ever tell you. Before I could even ask, both school and my animals were taken care of. Your love not only supported me, but allowed me to focus on Joe. Those that were able to visit Joe in the hospital were uplifting and supportive for both Joe and me.

After the biopsy revealed the presence of cancer, I felt my hear stop. The surgeon told us that the surgery went well, and Joe was recovering. When he said that the third sample from the tumor came back as cancer it was like missile had been launched thousands of miles away, and it took a while to reach my heart. When it did, it definitely stopped. The world around me kept going, but I had stopped, paralyzed, drowning in a sea of emotions that I couldn’t understand. Again, you, my friends and family, were there to pick me up when I couldn’t even crawl. Your love gave me strength to show the brave face to Joe. I couldn’t have done that without your prayers and love.

Late Sunday morning, Joe was released from the hospital. We arrived home, and I had life to figure out. Exhausted and emotionally raw, I didn’t know how that would happen. Then more love poured our way like a tsunami. This tsunami of love brought my sister helping me clean and organize our apartment. Then Laura brought food when I couldn’t even think about eating but knew that both Joe and I needed to. She also brought news that Stephanie had secured for me a wonderful guest teacher for as long as I needed her.   I also talked to Tara (the most wonderful teaching partner ever) who let me know that the details at school, including packing, were taken care of. At that moment, I didn’t know how I would step back into life, but I knew that friends and family were there to help.

Since bringing Joe home, I’ve gotten a little closer to figuring out our “new normal.” With each note, hug, meal, email, conversation, and FB message with friends and family, our path seems a bit brighter.

Thank you for letting me cry when I need to cry, listening to me tell the same story over and over because I can’t remember who I’ve told what to, asking how Joe and I are doing, for bringing me food and reminding me to eat, for distracting me with stories that bring a smile to my face, sharing stories of similar struggles and success, and most of all, for your prayers and love.
I’m sure that I’ve left things out and seem like I’m rambling, but I wanted to thank you as best as I could.