Saturday, January 30, 2010

Jan. 30th

I think about writing all of the time and yet there never seems to be the 'right' time, enough time, or enough energy when there is time. These are issues that are not new to any person, but they do seem to be more prevalent and more difficult to work through then before. Everything seems harder, everything takes longer, and everything has new meaning. So here I am today - alone and with time to write and it is hard to know what to write. I want everyone to know that we are doing well - considering. We continue to move forward. Some days we move more rapidly & freely and some days we move more slowly trying to carry the weight of everything that has happened & the loss of not having Robert here.
It has been six months and its does not feel like it has been six months. That is probably because it is still hard to believe that any of this has happened. It seems unreal - it seems impossible and I don't want the reality to catch up with me - as I do not know how I will be able to handle it.
I hold on to what I do know. I know that our love was real- our family was strong- and our love will live in our hearts.
I believe that this is what will get us through the moments that feel impossible. I also know that we will have people who surround us - who will support us. The boys and I are forever grateful for the time with Robert and his presence can be felt - even today.

Sunday, January 3, 2010

Jan.3rd

We have celebrated holidays, birthdays, New Year's, all within a month & a few days and it has been a celebration with a heaviness that hangs over us. Happiness and sadness both at the same time. Joy for the memories of these occasions with Robert, joy for the gift of experiencing the celebrations through the eyes of the children, and joy for the gifts that we receive in being surrounded by so many people who care.

I hope that everyone finds peace and happiness in all of their experiences- always.

Sunday, December 20, 2009

Dec. 20th

I don't know why I have not written. Perhaps it has been to emotionally difficult to think about it - to write about it. Perhaps it was that I didn't want to sound negative. Or - maybe a lack of energy has prevented me from posting.
So here is what I know- Everything seems more difficult and takes longer then it used too, but I have always found the blog to be a therapeutic process and like the idea that others found it useful in being able to stay updated.
It would be impossible to not express some sadness/negativity when posting (sometimes) as we have experienced a great loss.
The lack of energy that I feel is both physical and emotional. There is much stress and there are moments that seem paralyzing. We always get up, it is just after taking time to reflect & re-energize.
Everything that we have been through - diagnosis, treatments, and lose - seems incomprehensible, unimaginable, and unreal. There is no other way to describe what has happened and how we feel about it. We miss Robert all day everyday.
However- we are doing well. We are still surrounded by so many who give to us in every possible way. We carry the good wishes and positive thoughts with us always and are uplifted by the kindness of others.
The boys are doing remarkably well and are my biggest motivators. They are wonderful in their ability to process and deal with reality and live in the moment. They are sensitive, open and honest and I learn from them. They have great memories of Robert and talk about him often.
I could write forever, but I just want to wish everyone a Happy & Healthy Holiday.
Building memories is a blessing - Having memories is a gift.

Sunday, August 9, 2009

Aug. 9th

It feels surreal- everything seems surreal. The fact that Robert is no longer physically with us seems unbelievable. It seems impossible and yet I was there through it all. I watched it happen and yet - I can not seem to comprehend it. This phase of the journey is more difficult then I could have imagined. We spend our days trying to function without Robert and it seems wrong. There are no words to express what we are feeling and experiencing.
We are working to get through the darkness and find physical and emotional peace. We are so grateful for the immense amount of support that we have received and know that this is critical to our healing. I will pick myself up. I will properly thank others and find ways to give back. For now - I ask for your patience - during this most difficult time. Love to all - Tammy, Bryce, & Trey

Friday, July 24, 2009

July 24

This morning I sit here and try and mentally prepare myself for the funeral that will take place this afternoon. I know that here is really no possible way to do this and yet I as I always do- want it to be done well. Done well for Robert. The love of my life. The father that loved and took such good care of his boys. The son who was so attentive and loving to his parents and the brother who always enjoyed being with his brother and sister. The friend who was so loyal and considerate. A good guy.
I sit and listen to the music that we have listened to so many times and it now has a new meaning. The music has changed and it is still powerful. We will all hear the music again and find peace. I believe that Robert has found his peace and I know that he will help us to find peace through the lessons that he taught us.
We miss him deeply.
I wanted everyone to know that we will carry your energy with us today. For those who are not physically with us today- know that your thoughts and good wishes are being felt and we are thankful to have you in our lives. The memorial service will be a time to celebrate Robert and the "power of the people". Love to all.

Tuesday, July 21, 2009

July 21st

Today is the saddest day of our journey and I cannot seem to find the words to tell why. There seems no other way to say it. Robert died early this morning and our hearts are filled with grief and also with some sense of relief that he has now found peace. I know that he is peaceful and believe that we too will find peace again. For all those who loved Robert - there will forever be a place in our hearts that he lives in. He lived well, we had fun, and we are blessed to have had him in our lives for as long as we did.
I thank you again for your support that has helped to carry us through this journey. I thank you for your continued support as we strive to find our path through the next phase of this journey. There are so many supporters and it is impossible to reach out to individuals to express our gratitude. Please allow me to say a global thank you through this blog that Robert created to stay connected to you. We are blessed to have you.
Considering Robert's wishes and the large number of family, friends, and supporters it seems logistically challenging to accommodate so many for the funeral service. Therefore, we will have a private graveside service for immediate family members only. In the near future - we will hold a memorial service open to the extended number of friends. Until then - we feel your love and support and will hold it close in our hearts. With Love- Tammy

Monday, July 20, 2009

July 20th

It seems odd, but I am not sure how long robert has been at Gilchrist. The days, hours, and minutes seem to pass without recognition of where we are in time. There seems to be less focus on the global concepts of time and a greater focus on the moments in which we find ourselves in. Planning ahead - even hours ahead seems impossible. Without the initiative that others take - it would be impossible.
While the days seem to blend together, there are certain dates that stick in my mind - as they were moments that we knew signified dramatic changes that would forever change all of our lives. The exact changes and the timing of the changes could not be imagined or determined and I now believe that there is a reason for that. There are so many phases that we pass through during this journey and each one brings about its own set of emotions, challenges, and perspectives, and most importantly lessons. If anyone had to try and experience, face, deal with, and process everything that happens over time it would be an overwhelming emotion and sense of loss - that it would knock them down to the ground and keep them down. I believe that we are created with defense mechanisms that only allow us to process and take on as much as we can handle. There is a reason why - when given the diagnosis of Glioblastoma Multiforme Gr. 4 no one tells you what will happen. Now it is happening and I hate what is happening and I am powerless to control it. I am not so self-absorbed to even presume that I should be able to control what is happening to Robert. I believe that it is in God's hands and pray that Robert will find peace and comfort during this next phase of the journey. Trey said it today and I was surprised to hear such a mature and insightful comment spoken by such a young child - "It is nobody's fault." I hope that I can maintain faith throughout this journey that I will travel through for the rest of my life. I hope for everyone to stay focused on the positive thoughts and memories and not to expend energy on the questions of why and the unfairness of the situation. We must try and maintain a positive attitude and uplifted spirit to assist us in finding peace and, courage, and to find the positive lessons to be learned. We love Robert and I know that this would be his message to us. Thanks to all for you support that reminds us each and every day that we are not alone.

My Condition - Glioblastoma Multiforme (or GBM)

I was diagnosed with Glioblastoma Multiforme (GBM). This condition has four different grades (I - IV). My tumor is a grade IV GBM. This is the most aggressive GBM tumor. I have included a little section of The Essential Guide to BRAIN TUMORS below to describe the condition more completely.

Astrocytoma

An astrocytoma develops from star-shaped glial cells (astrocytes) that support nerve cells. These tumors can be located anywhere in the brain, but the most common location is in the frontal lobe. Astrocytomas are the most common primary CNS tumor.

The physician, usually the neurosurgeon or neurooncologist, will discuss the type and location of an astrocytoma. The pathologist will assign it a grade. Astrocytomas are generally classified as low or high grade. Low-grade astrocytomas (grades I and II) are slow growing. High-grade astrocytomas (grades III and IV) grow more quickly. The main tumor type is listed for each grade. There are additional tumor types in each of these grades.

The WHO classification divides astrocytomas into four grades:

  • Grade I Pilocytic Astrocytoma
  • Grade II Low-Grade Astrocytoma
  • Grade III Anaplastic Astrocytoma
  • Grade IV Glioblastoma Multiforme (or GBM)

Characteristics

The characteristics of an astrocytoma vary depending on the tumor’s grade and location. Most people are functioning normally when diagnosed with a low-grade astrocytoma. Symptoms tend to be subtle and may take one to two years to diagnose. This is because the brain can often adapt to a slow-growing tumor for a period of time. Highgrade tumors may present with changes that are sudden and dramatic.

Symptoms

  • Headaches
  • Seizures or convulsions
  • Difficulty thinking or speaking
  • Behavioral or cognitive changes (related to thinking, reasoning, and memory)
  • Weakness or paralysis in one part or one side of the body
  • Loss of balance
  • Vision changes
  • Nausea or vomiting