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Glioblastoma

quattlebaumpt
Posts: 1
Joined: Oct 2015

My Glioblastoma

 

“If God Dwells inside of us like some people say, I sure hope he likes BBQ, because that’s what He’s getting”

 

 

August 1st 2015.

Driving alone in Utah with onset of Nausea requiring me to pull over on a back street to a grass median. A few dry heaves and everything felt fine. Returned to my truck and realized 2 hours have past. Yep lost 2 hours of the day.  First though, I had a seizure and that cant be good.

 

I felt completely fine and have been relatively healthy my entire life with no history of epilepsy or seizures. I returned home with follow up with dr the following week.

 

August 10th 2015.

Labs showed that my thyroid was not working well so I was placed on a new medication to help with that. Scheduled an EEG for 8/28/15.  Results were negative for any epilepsy or seizure activity. Further medical test revealed no apparent reason for this incident.

 

 

September 28th 2015.

MRI scheduled for 4 pm.  6PM that evening my primary care physician called my wife and asked to see us ASAP. Being in health care is a curse in situations such as this because one knows that such a call in not good.  

 

September 29th 2015.

8 am. To be a physician and have to give news such as this has to be one of the most difficult responsibilities. Simply put he got right to the point and said that I have a Brain Tumor! He then read from the radiology report.

        

 

Impression:

“4.5 x 4 x 3.5cm heterogeneously enhancing intra-axial mass within the right parietotemporal region as described that is highly suspicious for a high-grade primary brain neoplasm”.   High- grade brain neoplasm is what stood out the most in my mind and it was certain that I would not be of this world much longer.

 

How does one process such news? I cried like a baby…….  I could only think about being able to provide for my wife and how sorry I was that I could not shield her from such heartache.

 

 

For the next week I was completely numb to life and could barely interact with anyone. I expected to bounce around between Denial, Anger, Bargaining, Depression and Acceptance however a strange since of peace surrounded me.   

 

Referral to an Oncologist was the next step and occurred relatively fast. This is when we were able to sit down and take a closer look at the MRI.

 

 

 

(White mass on the right side of my brain)

yep that’s not good or is it? This is the moment when Hope entered the picture. My Oncologist said that the good news is that it has distinctive boarders and has not seemed to metastasize. This is the moment that Hope exited the picture. He stated that this is what his professional organization refers to as Brain cancer. To me and most others cancer and brain tumor is not something that one associates with Hope yet he was very comforting and professional in the fact that “we” don’t know anything till we get a biopsy. He made a few assumptions and said it could be MS or a Glioblastoma and that a neurosurgical consult was warranted to determine the next step.   Upon reflection it would have been easier on my psychological state if I were simply told that it’s a Craniocaudal mass and biopsy was needed to further determine the next course of action. This is what the neurosurgeon told me and Hope entered back into the picture about 2 weeks later. Whatever you do don’t research Glioblastoma. It’s not good and in hind sight I shouldn’t have done that because I am dead in a year or 2 possibly 5 if I am lucky.

 

Perhaps one of the most challenging moments was how am I going to tell my mother that her only child has a Brain tumor. It has been a little over a week now and all I knew was that I have a large high grade brain Tumor with no symptoms and that was just not enough information to comfort her.

 

 

Revisiting my sense of Peace

 

By no means am I the poster child for the Judeo-Christian culture however I have always had a strong since of Faith throughout my life and have been well taken care of at all crossroads in my life. I attribute this sense of peace with my Faith and know this will remain with me till the end.

 

 

October 6th 2015

Huntsman Cancer Center Utah.

Neurosurgical consult with some of the most compassionate and professional health care providers I have ever met. This institution is a well-oiled machine. They are very good at what they do at all levels.

 

Further review with my neurosurgeon of my MRI with Hope yet again that this could be a benign Meningioma. Positive things said were I am having no symptoms, I am young and the location of my Mass is good.   Details of surgery discussed with possible post surgical impairments of Left sided Upper extremity and facial weakness.

 

 

October 7th 2015.

Cerebral Angiogram performed to determine/attempt to block vessels to tumor to decrease bleeding during surgery. The vessels ended up being veins so no need to block.  Post surgical this was my worst. Unbelievable headache and non-stop vomiting.  I have vague memories of very kind nurses.

 

October 8th 2015.

Time to peel the GrapeJ

Under the knife for about 6 hours with partially under and “cerebral mapping” to decrease impairment risk along with in surgical MRI to insure full tumor removal.

 

Results:

Pathology report was a cancerous Glioblastoma. Psychologically I was prepared for this prior to surgery and that sense of peace was still there.

 

October 10th 2015.

They asked if I wanted to go homeJ crazy. I was doing ok however I did feel like my brains were scrambled and I was unsteady with walking. I also had a little double vision of which I am told that it is related to edema that has settled in my occipital lobe from surgery and should get better.  I asked to stay a bit. 

 

October 11th 2015.

I am home

 

October 19th 2015.

I am returning to work and will take it a day at a time. My vision is getting better but I am still fuzzy in the head. I will be following up on 10/23/15 in salt lake with a neuro oncologist and a radio oncologist to begin my radiation and chemo of which I will be doing in Idaho Falls.

andik
Posts: 1
Joined: Oct 2015

As I read your story I am sending all the positive angels possible to you.

I know this GBM.  I also know there are treatments out there that are not yet recognized in the United States.

I am proud to be a first generation American citizen, but I am not proud of how our government makes their decisions.

Please read the first hyperlink below.  That link has information about CBD and GBM. 

My son wanted to take my husband to Canada to get him help.   But for him, it was too late.

Please consider this.  May your life be full of love.

http://www.gwpharm.com/oncology.aspx#glioma

http://www.gwpharm.com/oncology.aspx

dcs67's picture
dcs67
Posts: 1
Joined: Dec 2015

March 4, 2015 my husband had brain surgery at Johns Hopkins hospital to remove a tumor almost the size of a tennis ball on the back right side of his brain. The tumor is located at the visual processing area, so that has affected his vision great. They put him on Dexamethasone and Keppra he wasn't fully weened off of the dexamethasone until after radiation was done in May 2015. He was on 1mg 1 time a day, I had to take him to the ER for some strange behaviors, more funny and weird at the same time. They increased his dexamethasone to 2mg 2 times a day, which really helped, he was doing great, actually was able to do things, walking was becoming more difficult. He then was finally completely weend off. What a difference that made, I had my husband back for a short time. Sept 29, he was admitted to Johns Hopkins and Oct 1 he had his 2nd brain surgery to remove the reoccurrin tumor, Oct 6th they did another surgery to put in a shunt, the pressure was building up in hi optic discs and now he is close to being blind. This time a bit larger than a tennis ball. Back to the Dexamethasone again, this time they brought out psychosis symptoms and extreme weekness, severe muscle  spasms, and tired all the time. They increased the Dexamethasone to 4mg 2 times a day. It took the spasms away but didn't do much for the psychosis. In mid November the MRI revealed that the tumor has grown back a third time and it is too soon to do surgery for removal. December 30th he had his first Avastin infusion, they will slowly ween him off the Dexamethasone. Here we are up today Dec 31, 2015, hoping and praying for a much better new year. The Dexamethasone is a horrible drug but it has done well with brain swelling. It's so bad my husband at this point can't even go to the bathroom without me, can't get out of bed, walk up and down the stairs, and really most things he used to do and remembering things is for the most part gone. All of his doctors reassure me it is from the Dexamethasone, I sure hope so.    

                                                                       Diane

 

 

 

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