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Heres hope.........

Hope4MYDAD
Posts: 11
Joined: Nov 2011

On Decemeber 26th 2011 (last year) my dad went to the emergency , after fighting with him for weeks that he wasnt acting right, doing strange things, not being able to make conversation etc.. etc.. hes a stubborn man, and has barely ever been sick in his life. So with saying this, he kept trying to tell myself , my mother & my older brother that he was just coming down with the flu... but myself.. being just as stubborn as he is, i kept fighting with him over it.. Eventually , boxing day.. i faught enough , he finally agreed to go to the hospital.( he knew himself , something wasnt right) My brother & mother drove him in, as I stayed home to attend our family supper..it was our year to do boxiny day supper at our house.
So at home I patiently waited , they left around 2:30pm... by 9pm I had recieved a phone call from my mom, stating that I should come to the hospital ASAP.. well my heart stopped, my stomach dropped.. I was speechless, I just knew it.. She wouldnt tell me any details , But I tell ya the drive from my house to the hospital (45 mins) seemed like 4 hrs..

I got into the emergency , seen my mother she filled me in on what they knew so far to be the problem. They did a CT scan, seen a 5 cm mass in my dads brain. Right away they called for the oncologist to do an emergency MRI, when the results came back they comfirmed as to what they beleived was GBM , not sure the grade of it at this point. They could tell what type it was by the look of it through the MRI scan. Right away they insisted emergency surgery.. That night they moved my dad up to a room, as we werent all sure what the extent of this was going to be. We were all really unsure how to react. The doctors would know more information after the surgery.
So the next morning he was due for surgery at 9am, he was out of surgery by 12pm. He was in the recovery room, we were in the family waiting room... the Doctor came in , released the news... they confirmed he had GBM GRADE 4, at this point we didnt know what to say or do.... all of us were speechless, Me being the stronger one out of the family ( just my personality) I had to keep it together for the rest of us. Only being 24 years old myself, it was taking on a lot. The doctor didnt want us to tell my father what the results were 100% , he wanted to relay the information himself once he came out of the ICU. I didnt feel this was right , because Im a lot like my father ... he knows when there is something wrong with me , even if he isnt in his right state of mind. Which he did, as soon as i walked in the recovery room, BAM... he knew, he kept asking me what was wrong .. and why i looked upset... The worst part is knowing the information that i knew and not being able to say anything. :(

Eventually they told us we had to leave the room, so he could get some rest.. I drove home, came back the next morning. My mother stayed the night sleeping sitting up in a chair. When I arrived the doctor had already been in and broke the news to him. At first he didnt know how to react, but then again really how do you react when one minute your healthy as can be, then the next they say you have 2 years to live ..if you take treatment and 3-6 months if you dont take treatment. Everything suddenly felt like it was crashing down for all of us. But yet again, I had to be strong for him , I had to show him that If i had no fear of it, then he shouldnt either.

Me showing him my strength allowed him to be even stronger, it allowed my mother to be stronger as well as my brother.. I mean if we all fell apart , who would be there to pick up the pieces... someone had to do it...
I sat down with my mother , discussed what would take place next... I would stay at home and be the primary caregiver for him throughout his treatments , etc... that way she could still go to work ( without work over a long period of time, she would lose her medical coverage) so she went back to work shortly after my dad was realeased from the hospital( 2 days after surgery)... I stayed home, kept the house up.. did the errands, drove my dad to his Radiation appointments, etc.. I made a food plan for him, made all his meals .. made sure he ate when he was suppose to etc. Being a cook , it worked in his advantage cause I knew what protiens , vegtables he shoulda been consuming to keep a healthy body.

My dad recieved 6 weeks of radiation and chemo(pill form) at the same time, they did this because his body was strong enough to handle both doses. He had very minimal sickness, While taking Chemo, he was taking HEMP pills... recieved from a homepathic doctor. Which helped with his sickness and kept his immune strong. He finished his radiation, had a month off .. then proceeded with chemo pills again for 5 days out of the month... After pushing him to get outside for walks(when your feeling down and depressed, you dont want to leave your bed) but I faught with him again, and made him walk.. explained the good of it, and that laying in bed thinking your going to die isnt going to help fight the battle.. He would see his doctor regularly.. which i cant thank enough for how good they have been to him & our family. He didnt lose any weight while taking chemo, radiation.. he only lost a bit of his hair, which is slowly growing back... Most people who see him now would never think he was even sick. Cause he looks that well. And with his hat on you wouldnt even realize he lost any hair.

He last seen his doctor October 2011, which he is now done his chemo, they only did it for 6 months.. he has had 3 CLEAN MRI scans. And hes due for another one in January 2012.

He has since (August2011) gone back to work a few shifts at his job, although Im very strict and wont allow him to over do it, its once you hit that point of not getting the required rest you need, and eating healthy regularly...thats when your immune system starts failing itself..and then problems occur.. so he goes down a few hrs out of the day, only 2-3 days a week..I deliever his lunch to him if hes not home for it before I , myself go to work at my own job. He has since then (August2011)been given his license back, they had taken it away while on treatments..But with clean MRI's they felt no need to suspend it any longer. He had lost some of his short term memory but even that seems to be improving which they said it was normal for him to have affects due to the surgery and location of the tumor. Which the doctor who did the surgery said they removed everything visable to the eye, but with that Grade of cancer..its impossible to get the little fingers that grow off of the tumor which is what causes it to spread. But so far so good, 3 clean MRI's and life is back to somewhat normal.

Oh ya, he also goes and plays cards with his buddies 2-3 times a week for an hr or so in the evening.. which allows him to get out and its good for his brain it helps keep it alert..any board games, card games.. things like that I feel play a big part in the brain, it allows it to excersise itself.. once you stop using things.. example.. if you use to run , then stop... its hard to start running again without feeling out of shape and your not as quick etc.. its how your brain is..you stop using the functions, its hard to get those functions back, specailly someone who has had brain trama...

all in all, after writing my story... hoping that in some way i will either help or inspire you to have hope and faith...also its to help people (family memebers)push people they know to get checked out by a doctor if something doesnt seem right.. Even if they try and tell you they are fine, if you see signs and symptoms yourself.. do whatever you can to make them have the test they need..over those weeks of fighting with my dad to go see someone, i threatened him a couple times with calling the cops and ambulance..ya gotta do whatever it takes..Even though my fathers doctor did reassure me that even if he would have went in when first showing his symptoms there still wouldnt of been anything they could have done.. because of the type it is.. And, its the most aggressive cancer of the brain, they told us it probably started growing maybe a month prior at the most.. so even if he would have had an MRI 2 months prior to boxing day.. nothing would have shown.. thats just how fast this cancer stuff grows.. its insane.

So if your suffering from this horrible monster, or if you know someone who is.. you make sure you never lose hope.. and never stop fighting, if you want something bad enough you will get it.. if you want to beat this monster , you cant be laying in bed with no faith or hope on getting better.. ya need to get up, get out and dont stop doing what you want to do... eat healthy, get the required rest you need, excersize...and enjoy your life to the fullest, and beleive that you will get better.. because you determine your own destination... and i beleive faithly that if my father would have just layed in bed and didnt have the strong support around him like he has, then he probably wouldnt be doing as good as what he is.. You need to look at it like this... " your not sick, you have been given something, i wouldnt say a gift.. but its a challenge.. god doesnt give people something if he didnt think they werent strong enough to either fight it or handle it..so take this oppurtunity and show just how strong you are.. even on your most down of days.. push yourself or help push someone to get out for a walk , sunshine has its own natural essences that helps keep a healthy body... GOOD LUCK TO ALL, will keep you updated.. if you have any questions.. i may be able to help.. as I have been doing non stop research on this specific topic...

PS...fight for what you want... you want life... FIGHT!!! once you give up, the battle is over..

mighty6
Posts: 47
Joined: Sep 2011

Hope4MYDAD,

It's great to hear your encouraging story and great to know your dad is doing well after one year.
My husband was dx in July 2011, so we had been into this ~4 months by now. Everything is good so far. Normal standard treatment (surgery, radiation, chemo). He has tolerated all of them well, with minimal side effect (constipation, mild tiredness, loss of hair. etc.). So yes, there is hope, even for GBM patients. let's continue to keep our hope up!

Jane

Hope4MYDAD
Posts: 11
Joined: Nov 2011

My dad had all the same exact side affects as well.. wasnt anything to serious though, which sounds like your husband.. i hope all stays going well for him... fingers crossed, and beleive in miracles cause they do happen... good luck and keep me updated

Hope4MYDAD
Posts: 11
Joined: Nov 2011

My dad had all the same exact side affects as well.. wasnt anything to serious though, which sounds like your husband.. i hope all stays going well for him... fingers crossed, and beleive in miracles cause they do happen... good luck and keep me updated

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I agree 100% with everything you said. What an incredible blessing and strength you must be to your family! You absolutely inspire me.

My 28 year old son is currently battling a grade three (anaplastic) oligodendroglioma. He had a recurrence in July and he has had a rough time since then. But things are starting to look up for him....he is starting a new chemo protocol on Wednesday and we are hopeful that it's going to help him.

This website encouraged me: http://livingwithbraincancer.com
This man is fighting and GBM and he is living well. I hope it will bring you some encouragement too. Please be sure to keep us updated here at CSN.

Love and blessings,
Cindy in Salem, OR

Hope4MYDAD
Posts: 11
Joined: Nov 2011

Thank you for the website, very encouraging... I will be adding your son to my prayers as well..
Think positive, be strong........ and never ever give up!!!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Good Morning:

Thank you! Praise be to God. You answered my prayers today. I needed hope and faith renewed and your blog really helped me. My 18 year old daughter has her infusion today and she is so tired emotionally and physically. Our family just feels beat up. We have two other children who don't understand what we are going through.
Sarah is having trouble keeping up the fight, but I push her. I tell her you have to fight baby! Chemo is fighting to live, it is one of our tools. We have to do it. She doesn't want to do the chemo anymore, but we go and get it done. The Temodar makes her very sick. She has been doing her chemo for six months already, but has until next May.
We are believers. We have faith, but some days are harder than others. I just want to thank you for your words of inspiration. We will keep our faith and keep up the good faith. God Bless you and your family.
Edna

Hope4MYDAD
Posts: 11
Joined: Nov 2011

Im so sorry to hear about your daughter, at such a young age too... life just doesnt seem fair , does it?
My father was taking Temodar, he at first had a few days of sickness from it.. but nothing to major , there were a few days i recall sitting beside him in bed while he was throwing up... :( its the hardest thing ever seeing someone you love so much , so sick and you feel so helpless.. cause really there is nothing you can do.. I know, so many times I prayed for him to feel better.. But I may have a solution, have you considered seeing a Homepathic doctor? they study all natural medicenes. My father takes HEMP pills 3 times a day...
Also, another suggestion.... Not sure how you feel about the use of Marajuina , but My uncle had the same kind of Brain cancer as my father has.. while he was on treatments he would eat cookies, or brownies that contained marajuina.. which calmed his nausea completely.. and there are proven studies of it as well.. My dad never had to try it because he wasnt actually sick enough for it.... I mean at this point for your daughters sake anything would be worth trying to help ease her from her sickness...

I just want to tell you, that You are doing a wonderful job , supporting your daughter and helping her push and fight.. even though at times you may feel like your making no head way, you are.. by you being strong and showing her your own strenght its allowing her to be even stronger too.. Just never lose hope, because once she stops fighting.. thats when she loses the battle, so you let her know, that she can be strong and that she can fight... she has no other option.. her life isnt over yet and no matter how sick or down and out she is, you keep pushing her to go further and further... like i stated we all choose our own destination, and life isnt fair thats for sure..... we are all dealt cards we may not want.. but we can never give up, we can never lose faith... and eventually if we want something bad enough..we will get it
You all just got to stay positive and pray every single day. Miracles do happen, and i beleive in them 100%.

I pray every night, and tonight and the nights from now on, your daughter will be in my prayers.......

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

Thanks for the positive reply. It is so helpful to support one another. Keep praying - it works.

Edna

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

I forgot-

I think we will try the brownies because my daughter has such bad nausea. We offered to get her the marijuana, but she did not want to do that, but I will suggest the brownies. Thanks.

Hope4MYDAD
Posts: 11
Joined: Nov 2011

I hope she will go along with the brownies, just explain to her that it will help her .. she wont feel near as sick .. it will be calming for her.. and they arent hard to make, just get a box of brownie mix , and add the marijuana to it .. bake, then they are ready.. and everytime she isnt feeling well she can eat one.. I hope it works, keep me posted on how she is doing.. good luck

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Good Morning;

She said she is willing to try it. I hope it will make her quality of life much better. Right now her infusions just monopolize her life. It is so sad for her and to watch her suffer. But, I know better days are coming. I am so thankful her current treatment plan is working. We have had two good MRI's and her recent petscan looked good as well. Enjoy your time with your Dad. God Bless.
Edna

Hope4MYDAD
Posts: 11
Joined: Nov 2011

Wonderful news, im very happy to hear... im sure the brownies will help her, i know they will. Just keep positive..it will all work out for you , as well as her.. Im very happy to hear her new treatments are working... Keep me updated, goodluck with everything.

Hope4MYDAD
Posts: 11
Joined: Nov 2011

I hope she will go along with the brownies, just explain to her that it will help her .. she wont feel near as sick .. it will be calming for her.. and they arent hard to make, just get a box of brownie mix , and add the marijuana to it .. bake, then they are ready.. and everytime she isnt feeling well she can eat one.. I hope it works, keep me posted on how she is doing.. good luck

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