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, 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