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Setback: Nother brain leasion found .My cancer story. A new challenge to fight. A.L.K. Mutated Adenocarcinoma LC met to brain.

rdn2blazer
Posts: 39
Joined: Sep 2013

Hello,


    I would like to finally share my cancer story as a whole in it's entirety. On May 5th 2012 I was showering getting ready for work and at about 5am, my world turned upside down in a split second. I passed out in the shower, from a brain tumor that metastasized from my lung cancer I didn't know I had to my brain causing a tumor. I had no idea there was even a problem. Looking back there were signs.
Fortunately, my lady heard something, and got up and came to the bathroom, opened the door and turned on the light. I looked over at her just as I realized the light came on, she had the strangest look on her face like, "WHY are you laying on the shower floor in the dark?” She thought I was having a seizure. I was actually dry heaving from feeling like I was going to be sick and vomit. I said, "Help me up, I passed out".

<o   A moment before that when I first came to, I was VERY dizzy and felt really sick to stomach. I tried to reach the grab hand rail that’s in our shower but could just not not reach it. My god how deflating that moment was in distress like I was. I had no control over my motor function it seemed. I laid my head back down on the shower floor and tried to determine why I felt sick and why I was on the floor. I thought I had passed out and was also trying to get my bearings back. I also realized I was kind of banged up from hitting the hard floor of the shower. That’s when my lady opened the door. So after telling her I passed out and to help me up, she went into emergency mode. She didn't panic and I didn't either surprisingly enough. My lady is a tough cookie and I'm proud as hell of her. Cool as a cucumber under pressure. A true wonder woman and a life savor, MY life savor. We're going on 15 years as a unmarried couple with a son and a home and are very happy this way. I was calm the entire time. She helped me up and out of the shower to the bed. I almost collapsed on the walk to the bed, but she held me up. I felt a little better sitting up. She said she was going to call 911, I said NO DON'T, I don't want a scene in front of our home at 5am. She said, "I'm taking you to emergency then!” I said, “Ok".

 

<o   Off to the local hospis we went after getting dried off and dressed which she had to help me do too. At the hospital they immediately admitted me, started working on me right away. After several tests, CAT Scans and a MRI, they found the tumor in my brain. It was over my left eye, at the front of my brain. All the doctors looking at my case were shocked at the fact I was still alive. They all said I was lucky to be alive. I had MASSIVE brain swelling. In fact the doctors said it should have killed me. A friend of ours is a nurse. I texted her just to say Hello and how are you, and Oh, by the way, I have a brain tumor, and I'm at the hospital. She was like, “WAIT WHAAAT!!!” And called right away. They wanted to do brain surgery right away but our nurse friend came to the hospital and said, "NO WAY is he having surgery here". They didn't have a Neurosurgery surgeon on staff or a Neurosurgery center there.

<o   After she made some phone calls, I transferred to UCLA Medical Center to their Neurosurgery/Tumor center. There they said they wanted to do more tests to determine if it started in the brain or moved to the brain from else ware. Sure enough it was from the lung after some tests to determine where it came from. They also said how lucky I was to still be alive. I had to wait 10 days before they could do brain surgery to remove the tumor, they said that was priority #1 to get that out or the swelling could kill me.

I had to be in the hospital all that time waiting so I could also be monitored in case it turned bad. Went into brain surgery on May 14th 2012, two days before my lady’s birthday. I had 7 1/2 hrs of brain surgery. They gave me all the warning of this surgery, from coming out fine, to death. I could have very easily died in surgery as well as there were unexpected issues so surgery took lounger then expected. Neurosurgeon said it was a very difficult surgery but went well. 1/4 of my brain had swelled so dramatically that it had been pushed off center of its normal position in my skull to the point of causing me to pass out.

   I survived the brain surgery thank god! About a month and a half later I had a 3 hr Biopsy surgery to check my Lymph Nodes in my chest behind my bread basket. Again THANK GOD all Biopsy samples were negative or I would have had only so long to live if it had spread throughout my body. It was automatic stage 4 due to moving to my brain causing the tumor. Two days after the Biopsy surgery I had lung surgery. Originally they were only going to remove the lesion off the lung but the Biopsy had caused swelling of my right lung, so after entering my chest, they decided on the fly to remove 1/3 of my right lung. So they had to then open my right rib cage with a large incision. I suffered through THE most god awful recovery pain ever in my life for weeks.

   About one month later I started chemo. The cancer I have is usually your typical Adnode Carcinoma lung cancer. But mine is different. It had what’s called an A.L.K. mutation. Only about 5% of all the Adnode Carcinoma lung cancer patients get it with the A.L.K. mutation so it's actually a very rare for of lung cancer. My cancer doc was rather excited as this was his FIRST case after 30+ years of treating cancer that had the ALK mutation. But he was very knowledgeable about this type of cancer. He said there is a drug that has an 85% success rate for curing this type of cancer.

   After just one month of recovery after lung surgery I had one radiation treatment to my brain. Then I started chemo. I had to have four 8 hour infusion treatments of really heavy chemo doses with three weeks in between each infusion treatment to recover. Unfortunately, my very first treatment I had a very bad reaction to the chemo drug Cisplatin and got WAY sicker then I should have from what the doctor said. So he changed my chemo medication to Carboplatin but first put 3 liters of fluids in me as he said I was really dehydrated, and it was better. I still got horribly sick, but it was nothing like the first medication they gave me.

   I returned to work part time after only two weeks following my last infusion treatment. I was still recovering from surgery, still VERY sore and moving slowely and still sick somewhat from the chemo. But I was on the verge of losing my home and there was no way in hell I was going to survive the cancer only to lose my home I worked so hard to finally be able to afford. And it had only been little more than two years from buying our home. My family will not be homeless as long as I'm alive. I went back to work just 6 months to the day, from the day I passed out and nearly died. May 5th to Nov. 5th. Only 5 1/2 months from the day of brain surgery, and 4 months from the lung surgery, and as mentioned, two weeks after my last chemo treatment. I didn't get the 1 to 2 years off work I understand a lot of brain tumor surgery patients get. Not to mention the biopsy and lung surgery and losing a 1/3 of a damn lung from freakin cancer. I had to get my ass back to work to keep from losing my home. So I tightened my work boots tight and went to work and toughed out the pain. 

 

    I returned to full time work after 5 weeks of part time work and collecting partial disability. I suffered immense surgery recovery pain after the biopsy and lung surgery. I had to sleep sitting up for nearly 6 months. I could not lay on my side, or lay down due to the pressure my brain may see from laying down. This sleeping sitting up exacerbated my already bad back and caused immense back pain. I had to go see a back pain specialist. Oh my god was she a life savor. Totally fixed the back pain and made the pain from surgery recovery much much more tolerable with the pain meds she replaced the original ones with. I've had 6 major surgeries in my life and plenty of out patient surgeries and have nearly 5 feet of scar on my body. The lung surgery was probably the worst to deal with. I was stabbed at age 18 and almost murdered. That surgery took longer to recover from, but it may have been just a tad less painful. Haha, kind of crazy to think getting stabbed hurt less. And that was a big buck knife burried 6 inched into my gut just under my rib cage. Punctured both walls of my stomach. Penatration was almost completely through me since I was so skinny at the time @ only about 118lbs. 

   The very hardest thing I had to suffer through was right before being wheeled into brain surgery. Everyone was telling my then 10 yr old son that it would be alright. There was a very real possibility that I could die during brain surgery, and I did not want my son to be hit with a bomb because everyone was telling him I would be ok. So I spoke with my girlfriend (My son’s mom) that I wanted to tell our son the facts of the situation. I wanted him to know the truth. She said if you feel that is what you need to do, then that’s ok. So I told her to have our friends who were there to give us a minute. They stepped away for a bit.

  I told my son that I wanted to tell him the truth, and that I would ALWAYS tell him the truth, no matter how much it may hurt. I asked him if he wanted to know the truth, he said “yes”. So I told him the fact is I could very easily die while in brain surgery. And that that is what the doctors told him mom and I. I told him that I wanted him to know that I felt I was THE luckiest father in the world for having such a wonderful son like he is. I told him I was so very proud of him, and that I loved him more than life itself. I told him if I didn’t make it, I didn’t want him to be hit with that bomb when everyone was telling him I would be ok. He understood. We were sobbing by then and it was incredibly hard to keep it together.

We hugged very tightly and cried together for a moment. I said good bye to my beautiful child, I told my girlfriend I loved her very much, and my friends who were there, and was wheeled into surgery. I will never forget the pain of having to say good bye to my son. I HATED having to do that, but I felt it was the right thing to do. I still cry most times I tell this story. I would not with that experience on my worst enemy. I started on my maintenance chemo drug, which is very specialized drug for my cancer with the ALK mutation. I have to take this chemo drug for a full year.

It is a milder dose then the infusion chemo treatment, but has almost equally difficult side effects like severe stomach cramps and abdominal pain, diarrhea, headaches. Thank god I have never vomited throughout any of this cancer fight. The dose of the medication was taking a serious toll on my weight and health. So I asked my cancer doctor if we could lower it. My weight was plummeting. We cut it in half, but even at this dose I’m on I'm just barley maintaining my weight. I’m 25 lbs. below my regular weight. Having to go to work while still on chemo has been absolutely fu**ing brutal. But, I’m determined to win this cancer fight for my son and my family.

I celebrated my one year of survival on May 5th Cinco Da Mayo 2013, and continue to fight each and every day. This is the hardest fight I’ve ever had bar none. I’m not a religious person, but I truly believe my miraculous recovery is one in a million. I should be dead. But I am NOT. During ALL this I never panicked. I never stopped fighting. There is hope. And I’ll never give up hoping. My doctor has said he thinks I should beat this for good once through all the chemo, and he believes I will beat this for good. I DO pray to God this is the case. For many years I’ve had a buzz cut hair cut.

Now, with the massive scar that they made across the top of my head, that runs from ear to ear, I keep my hair as short as possible. I wear my scars with pride that I have survived so much in my life. My scars, physical, and emotional, are who I am. They are proof of the battles I have survived and overcome.
<o
The cancer fight is just one, in a looong list of tragedies and near death experiences I have fought and survived and over came. This was not the first, and I’m sure it will not be the last. I AM a fighter, I’ll take on the next battle whenever that may be with the same tenacity and fight like I have all the others in the past. I AM a survivor to the fullest extent of the meaning of that word. This is my cancer story. Thank you for allowing me to share it.

   Robert

   UPDATE 1-31-14. I'm officially done with the chemo medication as of last Friday. Now I'm having brain swelling issues and as of yesterday I started taking anti-inflamatory steriods to get the swelling to go down. Not out of the woods yet. Still have to keep fighting. I was riding my dirt bike about one month before I passed out. I want to ride again and was getting my son's bike and my bike ready to ride. Now with this new news I now can't ride with brain swelling. Super bummed big time. I WANT TO RIDE!

   I have to say, if passing on this story, my story, on to ANY OTHER cancer patients or care givers or anyone related to, or knows someone who is fighting this MF@)*&# horrible disease, and my god it seems like it's almost everyone fighting this these days, But if it gives them an ounce of hope or extra fight that makes the difference in saving their own life, I WANT every single one of you to pass it on to every one you know.

  I fought this to this point without ever joining any cancer support groups, or sites for finding fellow victims of this junk to talk to or lean on for support. My choice, I know they are out there. Fortunately I had and have a great support. My family and friends and my main web site I visit most frequently, a 4x4 off road site have been my rock. Those guys freely donated nearly $3K to me to help with bills whatever. My main focus for fighting is of course my son, my boy, my mini me.

Now I recently joind American Cancer Society, thay of course have forums too, NOONE wants to be a member of but hay, it chose us, not the other way around. But I joined so I can now offer hope to others. Especially those who do not have any family or friends who are fighting this alone. My hearts breaks for them. With in my first week after posting a bit I spoke with a man who's 59 yr old mother has near same thing, just no A.L.K. mutation if I remember correctly. We even spoke on the phone, I offered. I offered as much info as I could, he was greatful and wished me the best. It felt good to help if even only my info and or story of survival.

 

 

 

 

 

 

  

 

 

 

 

 

Haha, I guess I'm not done rambling. I thought I'd share a little....I guess back ground, for what reason...heck I don't know, because I'm ramped up on roids I think lol. Different kind of roid then muscle roids but the doc said it would ramp me up, my god has it. And she said it was a moderate dose. Jeez! Seriously, I'm on edge BIG TIME. I have a pretty nasty temper and have been trying to real it in but this crap has me at zero tollerance for irritation or stupidity of ANY kind. I'm aware of it, I know I HAVE to stay in control, but let me tell ya, I'm pretty fearful. I REALLY NEED to keep it in check, I have WAY to much to lose, but I already flipped the hell out once and it kind of shocked ME even. Scary this poison they pump into you.

Get this, at one of my PET scans the nurse got me all prepped and ready for the shot I had to take before the scan. I mean ready to poke, then she walks out the room for a moment and returns with this cart, rolling it VERY carefully over to me. Only thing on the top surface was this rather HUGE stainless steel look cylinder device thing. It was actually a vertical cylinder, the largest diameter, then horizontally there was a smaller cylinder that looed to be either pressed into or bolted into the larger vertial cylinder. Thers was a cap in it that was also stainless, and something that looked like a stainless plunger at the back, all completely sealed.

The nurse now is wearing some kind of protective suit, gloves, a face sheild and safety goggles. She proceeds to VERY CAREFULLY remove the cap and sets it asside revealing a large needle tip only. Just the metal tip, no portion of the syringe. I already had a thing in my vein to put needles into, I had several drugs, a drug cocktail actually the nurse described it as. So I say, "What is this contraption for, why is the needle in this thing?" She says, "Because this is radiation and is a VERY, VERY (She stressed the word VERY and said it twice) Dangerous substance and it's very unsafe for the medical staff if it were to have a leak."

I of course say, "Oh, and so thats what you're pumping into me right now in a moment. Great, Jee, Thanks! lol. Yep I was sick for days from that.

Anyways, I just wanted to share that I'm only freakin 46, Cancer got me at 44. Ain't that about a....*****, excuse my french...but you know it gets ALL people, ALL ages, NO ONE is safe. Pray you have good genes. Mine were not. If anyone has any questions just ask. At this point I am an open book for the most. At least about Pain, Loss, personal tragedy. I have something I say that is VERY REAL. It's that I have, and have had a VERY loooong and deeply close personal and intimate relationship with pain. All of it, personal and physical. Sure I know we all have our tragedy's and stories. Some worse then other for sure. But I don't know about anyone else. I just know about me, and my life experiences, and the awful pain I've suffered, literally from birth.

I can almost tell you for every single year of my life, for 46 years, and yes actually from birth, there was some kind of serious drama or tragedy or whatever going on. It is insane. I want to write a book about my life, just don't know how and don't have the time to research how to do it. I've has sooo many near death experiences in my life its not even funny. REAL "Oh my freakin god I should have been killed!", but got freakin just plain lucky. Cats have 9 lives. Pussy's. I've had seriously dozens. Each time I survive, many times have left there mark though. I think the length of my scars totaled in length together is a factual statement of that, with nearly 5 feet of mostly emergency surgery scars. Then there are the dozens of times I literally walked away with out a scratch. Then there are the times I got road rashed up or dirt rashed up but no surgery thank god.

I'd like to post a few pictures but they are a little tough to look at. I can post up my scalp scar right after bandages came off. If even one person minds I won't post, don't want to disturb or offend anyone, if I even can post a pic. Let me know and I can post some very interesting pictures of my MRI immages of the tumor, the massive swelling, and now the Necrosis thats now causing brain swelling. Oh and since joining the American Society I partisapated in a funded study survey spicifically for A.L.K. mutated cancer. Just by posting a little about my story I was aproached and asked if I would be willing to help in the research to hopefully find a cure for this cancer. I was happy to help. It was about a 45 min phone conversation with some person.

 
   Anyways, thats about if for now. Still in the fight until the end whatever that outcome may be. I know I plan on riding my dirt bike again preferably before I go, but planning on it with my son for a long time to come. It's my favorite thing to do with my son is just ride. Ok I gotta stop now. Take care and thanks for listening.
 
Robert

 

dennycee
Posts: 686
Joined: Mar 2011

Robert, thanks for sharing your story.   It truly is amazing and I hope that Xalkori continues to work for you a long time.  My surgeon did not get enough matrial for a mutation test so I don't know if I have a useable one or not.  

Roid rage is awful isn't it?  As an adeno survivor I can relate to that.  As the child of a parent who died of lung cancer when I was 16, I want to say thanks For your honesty.   We were told that everything would be okay and it certainly wasn't.  It took me years to get over their lies.  

Please do update us occasionally.  Okay?  Thanks!   

rdn2blazer
Posts: 39
Joined: Sep 2013

Very much appreciate your kind words. I certainly will be updating this as I now am back in the fight again. Thought I was on the road to recovery but this Necrosis reared it's ugly head. I'll just have to beat it back down like I have all the others. God Bless

 

Robert

justbelieve14
Posts: 6
Joined: Jan 2014

Robert thanks for sharing your story. It was truely amazing. It had me crying and laughing. I hate that at the tender age of 46 you have experienced all that. I hope that after your swelling goes down you can ride your bike and not have to worry about CANCER again. You have fight a great battle and I know you say your not religious but you know sometimes God gives his hardest battles to his strongest soldiers. You have proven to be a solider. Good Luck and you will beat this thing we all hate...Look how far you have come.

 

I would purcahse a book about your life!!!

rdn2blazer
Posts: 39
Joined: Sep 2013

For your kind words regarding my story. Been wanting to post up about it for a bit. Hate typing though lol. Is it odd, that, although I wish of course I did not have this cancer crap, but I do feel VERY proud to be a survivor and fighter from this crap. And thats why I joined ACS, so I could lend hope. I don't need it myself really. I'll of course gladly accept it and have accepted prayers from people and whatnot. But I don't need it, I think I'll be fine, but I like to help those who don't have such a positive attitude, and could use a little encouragement and hope. I'm GOING to survive this period. Thats just the way it's going to be. I have my boy to play with and ride dirt bike with, and that is exactly what I AM going to do. Take care, thanks!

kenny601
Posts: 1
Joined: Feb 2014

Hi Robert,

hey Im from the Manchester UK and found myself reading your story and made it me laugh and cry and thats tough for a bloke who has just finished his time serving with the british army.Im in a bit of trouble at the moment and you have inspired me and given me strengh so thankyou.I was born in 67 so I  guess our paths are linked in time.My thoughts are with you .

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Hi Robert, you are so bless that Jesus wants to keep you here for a long time because you have things to finish.

love.

Rosi

rdn2blazer
Posts: 39
Joined: Sep 2013

Took yesterday off since my son's school was closed. Went to work today only to come home sick. Steriods to get the brain swelling down are thrashing me badly. Resting heartbeat is anywhere from 120 to 150. Doc said I'm not dealing with these meds well so I'm stopping them as of today thank goodness. Hopefully the couple few weeks I've had to take this crap has worked to get the brain swelling to go down. Can you believe when I went in today someone had emptied out my extra locker and dumped all my stuff into an empty locker and put a lock on it. There were other lockers open! WTF ASS HAT!! I gave the guy a piece of my mind before I left work this morning. I'm over it as I have more important things to deal with. He's lucky he didn't get roid raged on. lol 

rdn2blazer
Posts: 39
Joined: Sep 2013

Having a thin cut MRI on my brain tomorrow. Hoping this shows the brain swelling has gone away completely. I doubt it has though. Still haveing headaches. I know it's still early but I have a bad feeling I'm heading for a second round of brain surgery to clean up the Necrosis. I know I at least heading donw that path. Hopewfully something fixes this before a 2nd brain surgery happens. Man I DON'T want to go through that again. Finaicially we will lose everything I've worked so hard to keep after the first surgery. Almost lost my house, but managed to hang on to it. Back on time and current on mortgage too. I'm currently trying to start a small machine shop in my garage. It's hard enough starting a bussiness healthy. This has been brutal with almost dieing and fighting cancer and brain surgery and loosing 1/3 of a lung. Man talk about self abuse and making life harder, but this has been a 21+ year dream to start my own shop. I have a brand new cnc mill in my garage and am designing parts to sell for off road trucks, fabrication equipment, custom machined parts for dirt bikes, all kinds of cool stuff. I'm built my shop 99% by myself while recovering from cancer. I am bound and determined to have this shop succeed period. I want to race off road race trucks so I want my shop to fund this type of racing. I'm too old to race dirt bikes anymore. I've got a son to raise and a family to care for. Surviving this is THE ONLY OPTION for me as far as I'm concerned. I have to time for dieing, I have work to do. Get your fight back people. The fight in me is hella strong!

rdn2blazer
Posts: 39
Joined: Sep 2013

Being fitted for my radiosurgery mask today. Not sure yet when the treatment will be. will in the next few days I assume. This new brain met is in the back of my brain this time. NOT GOOD.

dennycee
Posts: 686
Joined: Mar 2011

Robert, 

hoping you check in before you leave for treatment/test.  In my minds eye, I'm envisioning you working away in your shop with a big smile on your face.  You've come through some difficult times already but know this- the love you have for your son and your girlfriend is the most important thing in this world.  Hold onto that and the strength of character you've already demonstrated, hold them and you can face anything. 

Best regards,

Denny

rdn2blazer
Posts: 39
Joined: Sep 2013

Radiosurgery radiation is scheduled for next Thursday for the new tumor. Just trying to eat healthy and gain weight and rest. WAR ON! f/u cancer.

ccfighter
Posts: 399
Joined: Jan 2012

Love your attitude.  Best wishes for a successful radio surgery and an end to the mets.  Love and light my friend.

dennycee
Posts: 686
Joined: Mar 2011

Let us know what happens.  

EaglesFly
Posts: 7
Joined: Mar 2014

And of the faith you put in yourself that is as powerful as the gamma knife. Your story touches so many parts of my own. Those head metastacisies are a *****, eh? Left me paralized on the right side, so I now have the experience of being a parapalegic in my resume, too! (all, 100% healed from that, though) And I am proud and you help to make me so. Indeed, your journey adds strength and healing to mine and to many. It gets so very important to share, doesn't it? Xalcori is ambrosia for me, too. I feel wonderful... so good that the diagnosis doesn't much bother me... I'll hang on to the prognosis instead. All the best and give that pest heck in this round of the war. A short poem by yours truly:

Hope heals.

Hopes heal.

 

More meanings than it has words... there's even a lesson in proper grammar in it. I call it "H" so the title isn't longer than the poem :)

 

Arthur

rdn2blazer
Posts: 39
Joined: Sep 2013

I had an MRI yesterday that will tell me weather the brain swelling has gone down or not, and weather I will have to have more brain surgery. And if the new tumor has been shrunk from radio surgery. Won't get results till next week.

ccfighter
Posts: 399
Joined: Jan 2012

Hope the results are good.  Prayers and good vibes.

Agv
Posts: 13
Joined: May 2014

Praying for the greatest outcome for you and complete healing. 

rdn2blazer
Posts: 39
Joined: Sep 2013
 ...the new tumor has shrunk or is probably dead. Will re-MRI in 3 months. The brain swelling appears to have gone down, only somewhat, but thats atleast the right direction. The doctors were glad to see it heading in the right direction. Would like to see more deminishing of swelling but still, it's progress.

NO SURGERY at this time at least. Man what a relief. The 3 month MRI will show hopefully more deminishing of brain swelling. And the other super important thing is no other brain tumors appearing at this time. ALL GOOD NEWS regardless. I haven't had the energy to hit the garage in about ten days. Really bothers me, but if I can't I can't, until I can again. I managed to today. Hopefully can keep it up.

__________________
dennycee
Posts: 686
Joined: Mar 2011

So glad that you had such a great outcome.  Thank you for sharing your story so that others can take hope from it.  

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