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

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.