Friday, November 30, 2007

November 30

We continue to try and find the humor in our daily interactions at Johns Hopkins. For anyone who has every spent time there- you know that it is a 'world' within itself. They have their own time zone and a specific set of procedures for maneuvering through the hospital. The fact that they do not provide patients and families with a rules and regulations handbook has caused Robert and I to find ourselves in some sticky situations. Ex. Showing up for an early morning appointment to find that the admittance office is closed and no one could tell us where we were scheduled to be. Finding a person sitting at a desk with a plaque titled 'patient service coordinator' who abruptly told me that he didn't know how to direct us. After a radiation treatment, Robert was handed his medical file and told to take to his appointment with the doctor. Let's just say- we got caught reading it -which is apparently not allowed. We inevitably wind up learning something new about what we are supposed to do, how we are supposed to do it, or where we are supposed to be. I have also discovered that emotional spouses get quick reactions from nurses. Seriously- Robert and I are grateful to be at such an amazing hospital. We have met so many amazing nurses, medical staff, and doctors that have provided us great care and attention. We have met so many patients and families that have told us their stories and remind us of how fragile and special we all are. They inspire us and remind us of how much we have to be grateful for. We are grateful for our support network that lifts our spirits and allows us to focus doing what we need to do to get well. You are the best. Thanks

2 comments:

Unknown said...

Hey Robert, It's Harold here. I'm so glad to find this site. All of your old pals here in Atlanta are really concerned about you. We have gotten little pieces of information here and there through Diana (Thanks Diana!) but this is really good to be able to check in and see how you are. We are praying for you and if there is anything I can do, please don't hesitate to ask.

Best to you!

Harold

haroldw@yahoo.com

Marcee said...

Oh Robert, my ever-youthful smiling friend! We can't either have aged, because in my mind we are still out doing stupid things in Buckhead and hanging out at the Tamarron pool. But life throws us curve balls, and we have reality facing us.

I don't know John's Hopkins, but I think we are first name basis with most of the pediatric specialists in Atlanta, and the good folks over at Scottish Rite. I feel your "pain" in so many ways. Looking for humor is certainly a good approach. When I was discharged from the hospital after my 23 oz son was born, I got the standard discharge form given to me that said I was not allowed to lift anything heavier than my child for 2 weeks. "Good grief!" You say that to yourself time and time again, and then this will hopefully be behind you soon enough. I know you will be a trooper for Tammy and your beautiful children.

We're keeping all of you in our prayers!

Let me know if there is anything I can do for you!

Marcee
marceeb@bellsouth.net
2979 Winterthur Close
Kennesaw, GA 30144
770-427-8748

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