Mother Passed Away

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

After four short months, my mother passed away on Saturday night.

She was originally diagnosed with a tumor January 21st, 2007 and underwent surgery January 23rd, 2007 to completely removed the tumor. Once the surgery was over, the neurosurgeon informed us the tumor was GBM IV and that she would never be able to see out of the left side of each of her eyes due to lost brain. She spent a month in recovery in the hospital relearning how to use her left side again. Eventually, she returned home and was able to move around the house and do most basic activities.

After two weeks, she began the typical Temodar/Radiation 6 week combination. She took 130MG of Temodar every day and did Radiation only during the week. For the first 4 weeks, she had no side effects (even her hair did not fall out). By the end of week 6, she had had some problems with nausea and most of her hair did fall out. She was slightly tired, but remained optimistic and still went for hour long walks each day.

During this time, she wrote many stories and we enjoyed each others company as a family. It was very easy to forget that she even had a serious illness.

About a month after her treatment finished, she took her first round of high dose Temodar. 350MG for five days, then no more planned treatment for 23. By day four of the treatment, she was completely exhausted and her nausea was severe. We went to her chemo oncologist who ordered another MRI because he noticed neurological issues as well. That night we found out, her tumor had come back but was smaller than the original tumor, which was good and bad news.

We then scheduled another surgery for two weeks from the MRI date. She went on a trip with a friend to a camp ground she enjoyed and they spent a fun week together. When they returned, she went in for surgery. She was weak by this time, but still happy and able to remember conversations. She had a quick surgery and came out much better than we expected.

She was completely awake and aware of her surroundings almost two hours after surgery. Her neurosurgeon told her she could go home the following morning. For the rest of the day, the offer remained in her head, so she demanded it all day. Eventually, the nurses relented and she was released around 11PM that night. I still think she was released from the hospital too early and at this point wonder if things may have been different if she had stayed there.

She came home and was required to take a huge number of medications. Steroids (8MG every 6 hours), Anti seizure drugs, pepcid, antibiotics, pain killers, and valium if necessary. For the first few days, we kept her on valium to let her sleep and regain strength from the surgery.

After several days, we stopped giving her the valium and let her be awake . It was obvious fairly quickly that her memory was much worse than before and that she had difficulty understanding everything that was going on around her. She would especially pick ideas and be stuck with them for hours on end until someone was able to resolve them.

We started to decrease her steroid dosage (to 6MG every 6 hours) and she began to lose more and more energy until she could barely walk. After that, we spoke with the neurosurgeon who told us to increase her dosage back to 10MG again. She recovered her strength, but was even more disconnected from reality.

After several days of her being extremely upset and confused. We started reducing her steroids again (expecting her swelling to stay down because of the increased distance from her surgery). Unfortunately, after only reducing the steroids down to 8MG, she lost most of her strength and was stuck in the bed completely. We called the ambulance and had her put into the hospital because she became weak so quickly.

The chemo oncologists analysis was that her steroid dosage was too high and that she was suffering from steroid psychosis. For the day, her steroid dosage was reduced to see how she responded. She lost even more strength through the evening and by night was deemed unresponsive and put into intensive care. Her neurosurgeon immediately called for 20MG every four hours to see if she could be revived. After 8 hours of the high dosage, she was waking up and moving, but unable to make any sense of the situation around her. She was calling for help, but could not identify anything that would help her, no pain, etc.

The neurosurgeon then informed me that she was at the end and things would only get worse. He presented the options to me as keeping her on steroids and watching her pain and discomfort continue or to completely removed her from steroids and put her on morphine. I chose the latter option after speaking to several family friends and another doctor.

They took her off the steroids and put her on morphine. She slept for the next two days peacefully. On Saturday evening, she took one final breath and peacefully never took another. She passed with around eight friends in her room with her. After only four and a half months, my 54 year old mother was taken by this disgusting disease.

This is the most painful and confusing experience I have ever gone through in my entire life. I had no idea she would pass so quickly and was completely unprepared to make the decisions I made. She is the most important person in my life and I have no idea how this will continue for me.

My mother had no genetic history for cancer, never participated in health-negative activities, and was an extremely active outdoorswoman. She was hopeful to the end that she would beat the tumor and she never gave up. Her attitude in the light of such an unbearable situation will continue to inspire me for the rest of my life.

To anyone going through this now, please please enjoy as much of every moment as you can. I know everyone says that, but once your loved one has passed, you think back over all the moments where you could have said one more I love you or taken one more step to show them how important they are you. I'm so sorry to anyone going through this.

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

My thoughts and prayers are with you. This disease is awful and it strikes without warning and does not seem to discrimintate against the healthy. I second your thoughts to everyone out there with family still going through this--treasure every moment. My dad passed away at 56 and after a 4 1/2 battle of his own. I sypathize with the pain and emotions you are now going through. Know that we are here for you.

Michele
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Michele

brainman · Posted: Tue Jun 12, 2007 11:16 pm Post subject: Re: Mother Passed Away

mixednuts, my heart goes out to you and to your family! Your story is so beautiful and so painful at the same time. My mother also died of a GBM grade IV. She died almost 9 years ago after only 2 months post diagnosis. I was fortunate to be able to spend a lot of time with her, to be with her through each test, and to be with her when she took her last breath. Unlike you and your mother, I was informationally prepared. In fact, I came to her house the day after she had an MRI at the local hospital but the day before she went to the specialists in Nashville. I took one look at her MRI and my heart sank. I had seen it way too many times. It covered an enormous area and was, in fact, causing a mid-line shift. I knew what I was looking at and that my mother was inoperable long before the experts made it official. My mother was still very much in touch with reality and made the choice herself not to have surgery or treatment other than to control pain and to keep her comfortable. One Sunday morning, she was in the hospital and my father and I were with her. I have see way too many people take there last breaths. My father was oblivious to what was happening. He was watching a church service on TV when I reached over and turned it off and told him that it was about time. Within a minute, my mother passed away. It still hurts to re-tale this story.

I am glad you and I had the opportunity to share our lives with our mothers during there last days. Those memories will make us stronger. God be with you and keep you.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Wed Jun 13, 2007 5:14 am Post subject: Mother passed away

Dear Mixednuts
So sorry to hear about your Mum's passing. What a torrid past 4 months or so you & your family have had. My brother was diagnosed in Feb too so I have been reading your posts & comparing stories (not that anyone's cancer is the same). My brother went through the raging temperatures & infections just recently & has been taking IV antibiotics. His daughter's wedding was bought forward to last weekend & my brother had the news that his MRI was clear last week. Our family have been through the same distressing times that you've had but fortunately we still have our beautiful Mark with us, & we are all very grateful at present. He is still disabled on the L side from his debulking surgery 6 wks ago but has had some joy in the hydroptherapy pool. I am telling you this so that in the midst of your sorrow & grieving you may feel your heavy burden lifted somewhat to hear some good news about GBMIV. Please know that my thoughts & prayers are with you & don't be a stranger to this forum as there are many people posting who have been through this sordid hell & have come out the other side feeling OK, these internet friends will help you in any way possible through their words of comfort & their own similar stories. Keep well, take care of yourself. Cheers, Angie T.
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Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brunette · Posted: Wed Jun 13, 2007 5:45 am Post subject: Re: Mother Passed Away

Im so sorry to hear your sad news, I know how awful it is. I lost my mum 3 months ago and I didnt know how I was going to cope afterwards.

Everyday brings sadness still, but at the same time joy. I try to stay happy because thats what mum would have wanted, but its so hard.

My deepest sympathy goes out to you and your family. Much love xx Jen

Kris · Posted: Sat Jun 16, 2007 3:48 pm Post subject: Re: Mother Passed Away

Dear Mixednuts,

I am with you in thoughts and I am crying with you.

I revived the story of my beloved Mum through reading your last ad. My 61 year old Mum had also only 4 months to live from GBM diagnosis (end July 06), although she opted for palliative care only, i.e. steroids and then morphine. She passed away (in November 06) similarly to your Mom, in her hospital bed, with my brother close to her.

I feel the same way like you, this is a horrible disease, and I'm still jiggling among the phases of anger-refusal-sadness-anger-refusal-sorrow ... and the only thing which relieves my pain is knowing that she's in peace now, she's no more suffering, the earthly suffering is over.

Everytime I see a rainbow, I know it's her up there, I know it's a sign from her, as just after the funeral (she wished to be released in the river which crosses our native town) a rainbow appeared in the sky - without any rain before - so we felt that Mum wants to let us know she was happy for having had the things arranged the way she wished.

Look for your rainbow Mixednuts, or watch for the signs in your heart, and you'll find your Mum watching you from the sky.

You're in my heart.

Kris

kashrel · Regular Joined: 24 Mar 2007 Posts: 25

Hi Mixed nuts

I am so sorry to hear about your mother. We are not too far behind you with my dad and your story mirrors so much of what we have already been through. There are no words to describe the way one feels to watch a loved one deteriorate so rapidly and lose their functional skills, memory and cognition which we all take for granted. One swings between wishing your loved one away to end their suffering , to fear as to how it will feel when they have gone.

This illness is a beast which destroys the brain. My dad too was healthy active and intelligent and now 15 weeks since diagnosis he is the most pathetic sad sight unable to even finish a sentence.

Your mom is in a better place, but this will take you lots of time to get over. I am not sure that we ever really get over things like this. They mold us and change us and hopefully we grow from them.

I wish you strength and love. I truly feel your pain, we all do on this forum. One of the most reassuring things to read on this site is when people who have already lost their loved one say that they are smiling again. I hold onto the hope that I ( and you) will reach that point too.

Best wishes
Kashrel
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Karen
Melbourne

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