My mother has Glioblastoma

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My mother has Glioblastoma

by katiejensen on Thu Nov 15, 2012 05:47 AM

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In August 2012 my mother had her first seizure. They became progressively worse lasted up to 20 minutes. The doctors finally sent her to Honolulu (she lives on an outer island-Big Island of Hawaii) for an MRI on October 16 2012. It was then they found a tumor. They scheduled a surgery/ bioposy for the following week. I dropped everything and went out to be with her. She is my best friend. The surgery was intense but she handled it amazingly well like she does with everything. Then it happened-- the worst news ever. Stage 4 Brain Cancer- Glioblastoma. I am still in shock. I spent the next 4 weeks with her. We spent lots of high quality time together- reading, taking short walks, watching movies, holding hands. I immediately started cooking the purest vegan food, juicing, vitamins, green drinks for her. I am now back home in Portland. My mother has decided to get radiation and chemo which she will do in Hawaii and then she will move in with my husband and I full time since my father cannot take care of her- he is a full time legislator. I am so incredibly sad about how much my mother has changed already. She walks with a walker, needs help up from the toilet, has seizures, is more disoriented and has trouble tracking ideas. I can't believe how fast this is happening. On top of that my sister has grade 3 breast cancer- just diagnosed in March 2012. She has had a masectomy and is on her 3rd round of chemo and radiation. She has returned to working as a nurse full time and has a 6 year old. How she does it I am not sure. I just need support, advice, books to read.... what should I be expecting in the next year?

My mother is the most inspiring amazing individual- I feel truly blessed to have her as a mother.

RE: My mother has Glioblastoma

by Malaika01 on Thu Nov 15, 2012 12:04 PM

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On Nov 15, 2012 5:47 AM katiejensen wrote:

In August 2012 my mother had her first seizure. They became progressively worse lasted up to 20 minutes. The doctors finally sent her to Honolulu (she lives on an outer island-Big Island of Hawaii) for an MRI on October 16 2012. It was then they found a tumor. They scheduled a surgery/ bioposy for the following week. I dropped everything and went out to be with her. She is my best friend. The surgery was intense but she handled it amazingly well like she does with everything. Then it happened-- the worst news ever. Stage 4 Brain Cancer- Glioblastoma. I am still in shock. I spent the next 4 weeks with her. We spent lots of high quality time together- reading, taking short walks, watching movies, holding hands. I immediately started cooking the purest vegan food, juicing, vitamins, green drinks for her. I am now back home in Portland. My mother has decided to get radiation and chemo which she will do in Hawaii and then she will move in with my husband and I full time since my father cannot take care of her- he is a full time legislator. I am so incredibly sad about how much my mother has changed already. She walks with a walker, needs help up from the toilet, has seizures, is more disoriented and has trouble tracking ideas. I can't believe how fast this is happening. On top of that my sister has grade 3 breast cancer- just diagnosed in March 2012. She has had a masectomy and is on her 3rd round of chemo and radiation. She has returned to working as a nurse full time and has a 6 year old. How she does it I am not sure. I just need support, advice, books to read.... what should I be expecting in the next year?

My mother is the most inspiring amazing individual- I feel truly blessed to have her as a mother.

Dear Katie,

I am so sorry for what is happening to your family. You sound like you are already doing amazingly well and it is a blessing you were able to spend quality time with your mother after the surgery. My husband was diagnosed in March 2012 and has gone through surgery and chemoradiation. Even though he had a recurrence and has had a second radiation two weeks ago he is still the same and working full time. The shock is still there as he has always been very healthy and positive. I truly draw my strength from him and how well he is handling this misfortune. Your mother sounds like a wonderful mum. I hope you get to enjoy more quality time together and her health improves. Take heart and solace in knowing that you are already doing the best that you can for now. I wish you love, Malaika  

RE: My mother has Glioblastoma

by Bulley1 on Sat Nov 17, 2012 04:17 AM

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Oh my, sometimes I am reminded how easy we have had it with GBM in relation to others. So sorry you are in this club no one would ever choose to join. Such a challenge to be so far away! Sounds like she has lots of post surgery issues. You might consider posting regarding her medical issues. There is lots and lots of wisdom on this site. My husband was so much better post surgery and rehab I have no experience/wisdom to share. I do wish your mother improved health. Pam

RE: My mother has Glioblastoma

by RobinMB on Sat Nov 17, 2012 04:45 AM

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Dear Katie,

Your mother survived the surgery without any strokes.  That is a good thing.  Let me tell you a little bit about my husband's experience with GBM Stage 4.  My husband struggled while he was going through the chemo/radiation.  He was extremely tired, but the Zofran that is used to relieve nausea worked very well.  It took him about a month after the treatment to start feeling better.  Then, he had more energy.  I found the book by cancer survivor Ben Williams to be very helpful.  There is also a great cookbook by Rebecca Katz called the Cancer Fighting Kitchen.  The recipes are delicious and they meet the needs of the cancer patient during various times of their treatments.  Have you checked out the virtualtrials website?  It has so much valuable information.  Cheryl Broyles, a 12 yr. GBM survivor also referred me to Dr. Jeanne Wallace.  She is a nutritionist who deals with brain tumor patients.  Just google her name.  Then, you can decide if she is someone you might be interested in contacting.  It sounds like you are taking amazing care of your mother.  She is so fortunate to have such a caring daughter. 

People tell me to stay strong.  I know that it is very difficult most of the time, but we have to be strong for our loved ones.  I'm sure your mother would do the same for you. 

You will be in my thoughts, and I think you will be glad that you found this site.  The people here are so compassionate and simply amazing. 

You can e-mail me any time.

Robin

RE: My mother has Glioblastoma

by jme858 on Tue Nov 20, 2012 06:39 AM

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Katie,

My mother has GBM as well, she is my best friend and my hero like you rmother is yours. My mother was diagnosed in May 2012, although she had symptoms beginning that Feb...My mom has done well, we are blessed. I would recommend when your mom moves to be with you to see if your cancer center offers any clinical trials, they have helped a lot of people. I also recommend reading the book an Unremarkable Man by Jerry Kline, a GBM survivor. Lastly I would tell you to not count the moments like she is passing, but to cherish them and to make the most of every day, pray a lot, God is the ultimate healer and never give up... unless you see an expiration date stamped on your moms toes, its not over. Life changes, there are good days and bad days, but no one is guaranteed forever. I will pray for you, your mom and your sister.

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