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NOW IT IS IN MY BRAIN!!!!

johnnyH
  • By johnnyH
  • Posted November 28, 2008 at 12:25 pm · 36 replies
  • Shared with the public
4 Recommendations

I just had an MRI to my brain on Sunday, Wed. the doctor informs me that it is now in my brain, shows me the different spots, few of them, tells me I have between 3 and 6 months left. I have tried the BUDWIG diet, went on organic, stayed away from meats, fried foods, sugar, bread, walked about an hour everyday, trying to do my part in fighting this disease, but no, I had to be the big victim. F U ck it I will party now, more martinis than ever, the only problem, is no matter how sleepy I am, I cannot fall asleep. Sorry about my profanity, but this disease, makes you speak your mind FULLY. Love, Peace, and May god Bless you All.

Explore topics in this journal entry and replies:

Exercise Cancer Tylenol Surgery Hospice care Meditation Seizures Physical therapy Lung cancer

36 replies

Mon

johnny make sure you keep up this fight, it ain't over til its over! Maybe you haven't mentioned everything he said but it perhaps sounds like even you aren't clear on everything the doctors are saying..what is the medicine they are giving you? and they have canned the radiation idea?
Try not to worry about telling your kids ... I know it is hard not to.. but as a daughter who lost her father at 22 to cancer, and now has a mother with lung cancer, the absolute best BEST thing (well for me personally) was just to know the TRUTH .. no secrets, no dressing up bad news.. if there is only one thing that makes me angry and confused is if i think my Mum isn't telling me the truth about how she feels to save my feelings!! I'm sure you havce brought them up wonderfully and they will be able to absorb the news and be a great source of comfort and smiles through times ahead.

jazzbo

Hi Johnny, hey you keep fighting for no one knows when we will all pass on. Could be today or tomorrow? Who knows? God ,yes. All the rest are like the weatherman could be rain or snow or sleet or maybe even sunshine, hopefully thier right 50% of the time. You live in New England, you know ,wait a minute and it will change. Remember Don Kent and the" blizzard of 78".
What ever time we have left we need to show tose who love us what they really mean to us. My kids were 9,16,18 when I was diagnosed and it was the toughest thing I ever had to do was to tell them. Just open the big heart and let them know how you feel. They are almost adults, they might know more than you think. But do give them the news sooner than later. They will be in the future so gald that they had time to spend with you and then they can shed thier armour to let thier feelings out. Holidays are always the time you think most about family here and gone . But when I do remember all the good times and yes some of the bad but mostly the good.
I spoke to my dad the morning of his death. It was at 8 a.m.It had snowed the night before and I was plowing his driveway. We talked a little bit just a few minutes. He said he felt like he had the flu coming on and I said get in the house will talk to you later. Well later never came. I was called 15 minutes later and they said my dad was found on the front walk and he unresponsive. Gone just like that. He was my best friend. I was 25. I am so happy that I was able to talk to him that day. I wish I had known but I didn't. You have a chance now to tell your family how you feel about them. Don't be sad , you are looking at the two best things you could have ever done with your life.
May the strength come to you and your family for the trying days ahead. It's my pleasure to call you a friend. God bless- John

johnnyH

Listen to this guys, I saw the doctor this morning, and with his special ways of communicating, I asked if doing any scans to the body would be at all needed or sought after, and his answer was that at this stage, he does not see anything to gain from it, and that the term he now looks at is about 3 to 4 months. So it leads me to believe that it may have spread to the inside as well. I may feel a bit nausea and heart burn , but probably because of this new medicine he has giving me. At least that is what my wife has said. But hey, now the hardest thing for me to do, is tell my children, my daughter is very fragile 17 and half, senior, wants to be a nurse, and my son joining the military, in the next couple of months, so that is my hardest approach I will ever take. I do not want to mess with their futures, or have a negative effect on their YOUNG decisions about their futures. So help me god, help me put the right words in my mouth, that is one thing I am so worried about. The doctor also said I will need Hospice care soon, since he foresees seizures coming up. I wont be able to drive. or basically be by myself. Maybe I can have a great XMAS with the kids and the grand kids, and maybe I will be lucky enough to be a bit far from the holidays so that they dont remember me only at the holidays. MAYBE, MAYBE..................
LOVE, PEACE

jazzbo

Johnny, your doing awesome! Just keep it together a little while longer. I do hope you come up to Boston. I'm in Auburn,Ma just outisde Worcester. Believe me for the trip, go to Dana Farber. They'll treat you like a king. Take care, John

johnnyH

Thank you again to all of you, this group is outstanding, another opinion is already in the works. Tomorrow I see my Onc. again at 8:00 in the morning, and also I had a call from the social worker at the hospital today, to give me support, and see if i need anything, basically she wants to see me and members of my family, to see how we are all coping with this. I have not told my kids,24 17. but I will, just waiting to come to terms with this. Few more days and I will be just fine. I believe in his powers, and I also believe about never giving up, and I wont, but, CANCER SUCKS....
LOVE TO ALL< GRATEFUL FOR YOUR REPLIES

Khari

Ellen,

That was awesome. Listen to her Johnny--she speaks the truth.

Khari

drawing3d

I am so, so happy to hear a few write in and give their testimony to God!

I am Stage IV also...also had a large met to the brain in an "bad" spot right next to my brain stem, lower cerebellum. God lead me to a world famous neurosurgeon all the way across the country (from Florida to Seattle) - He even provided the finances for it when my husband and I were literally rolling quarters! During the 7 hour long surgery, not only could they not "find" the "growing" 2cm x 2cm tumor they saw on MRIs the last six months (as well as on the super brain-mapping MRI taken just 12 hours prior to the surgery), the "lesion" they took out turned out to be just necrosis and macrophages doing their job. They finally quit digging around in there looking for it and closed me up. Subsequent MRIs prove there is nothing there now. They already had told me to expect to need extensive physical therapy to walk again, expect to be sonewhat paralyzed on my left side and maybe have trouble speaking...they also expected me to be hospitalized 5-10 days after surgery. Well God had other plans as I was OUT of the hospital completely in 2 1/2 days and not only could I walk and talk with no problems, I was walking over 1 mile a day, unassisted, 4 DAYS after my surgery!
Nothing, nothing, nothing is too great for our Lord! I was diagnosed "with the standard "less than a year" speech...and that was a year ago last month; I am on NO medication, not even a Tylenol and there is NO cancer detected in my body.
Unlike our wonderful friend George (stageIV survivor) on this board, I do eat all organics, no processed foods, drink plenty of water, take certain supplements and exercise everyday...but I feel better than I did before my diagnosis! Praise God!!
Every time I get down, I bring to mind the story of one man who was a Stage IV; his "healthy" brother was on his way to his house to pick him up to take him to his doctors appointment and was tragically killed in a car wreck on the way. This true story always reminds me that ALL of us on this planet, all 8 billion of us, are not promised life forever. We need to be thankful for what we have NOW; the people who love us, those we love, the roof over our heads, the food on our table, the green grass right outside our windows, the clean water we drink...and thank Him for each day we have been gifted. Instead of going to God with our grocery list of what we want, just some prayer and praise (and calm meditation) will do wonders for our health!
Bottom line: Just like everybody else has said, forget completely what your doctor said about "your time left". Man NEVER knows, I don't care how esteemed they are by the standards of other men. Only YOU and God have everything to do with your time left on earth. Never, ever give up.
God bless each and every one of us!
Ellen

hopefuldaughter

Hi Johnny. I just want to ask you again to please. please try to get a second opinion in Boston - Dana Farber or Mass General. It's worth a car ride up there (okay, I know the traffice sucks :-)). Dana Farber is amazing. If for no other reason than to get confirmation that your doctors are doing the right thing. Enjoy your martinis and good luck!

mitziger

johnny, i was looking at alternative medicine reports on cbs about low dose naltrexone, don't give up Johnny, I know it is so hard. I cannot think those people are lying about having stage 1V for a couple years and still doing ok...My only problem would be with getting doctor to prescribe it so you could get it compounded but if I could get this, I would certainly give it a shot. Are you close to one of the cancer centers Johnny? Please go get another opinion, I know you get tired of fighting, I have not had that much of a fight yet but tired of it already but don't like the alternative so do whatever you have to do Johnny.....Thoughts and prayers. They gave my friend 6-9 mo for 6 yrs.

USMCCAT

AMEN, JimBal!!! :) God Bless all of you here struggling with cancer...

USMCCAT

The language doesn't bother me at all. Cancer SUCKS, just plain sucks. I am so sorry for your recent discovery. I DO know someone that ahs had brian tumors and he is still alive and kicking! That was years ago. Tumors in his stomach, lungs, brain, etc...don't give up. Party, fine, but don't give up.

JimBal

Hi johnnyH,
I'm going to go out on a limb... I see a Big strong, handsome and loving man in your photo.

I too had brain cancer six months after going into remission for Stage 4 lung and bone cancers. My hair had grown back and in my tux, at my stepson's wedding, I looked like The Godfather! My hair came back perfectly. Then I lost it again, when I started the radiation treatment. I had to also start chemo again to cleanse my body.

I didn't give-up, or get mad and think that having faith was just a joke. In fact, my love for and closeness to God became stronger. I knew that there was a reason for this relapse and I was to only move forward with my faith and keeping a positive mental attitude. My wife knew what my chances were after listening to the doctor's prognosis. I didn't want to know anything other than the loss of hair , again, was my "going back into battle" look, like a Spartan Warrior. I knew that I would come out of this because I have faith that God is going to keep me around a long time, as I believed he had told me so.

I hope that you can regain your strength, faith and hope that you'll recover. This too will be behind you. Please DO'NT GIVE UP, turn on your faith in God and fight to win.

Did you smoke? I did, two packs a day for well over 35 years. One of the first things I did, when I was originally diagnoised, was to accept responsibility and asked God to forgive me for damaging the body he gave me. I told Him that I was so sorry. We lost our Dad to lung cancer only a year before. I believe that I was forgiven.

I was given 3 to 6 months on several occasions by many doctors. Who do you think healed me? You're right, God. Fight on johnnyH...

My Prayers Are With You,
Jim

tkane

Johnny,
I just found out a week ago that my cancer has spread to the brain. The spots were "too numerous to count". I have now seen three doctors- two radiation-oncologists. All three seemed very optimistic about what the radiation would do in brain. No one gave me a time limit...my first oncologist did and I moved on and found a new doctor:-) I go to Mass General in Boston. I have had a very positive relationship from the reception counter to the oncology department to the radiation department. I start radiation tomorrow.
I wish you all the best!
Terri

marilou122

Hey JohnnyH,

You sound exactly like my husband...he may be worse profanity wise....but I feel its good for one to speak his mind. Between his cancer , the auto makers and the stock market he airs his thoughts, profoundly. My husband (nsclc 3b) had a brain scan due to bumping his head on a shelf, they saw a shadow, MRI day after Thanksgiving.....now we wait. Onc appt. tomorrow afternoon. I truly believe we can face the news no matter what it is....I will be there for support and attitude adjustments....I am so proud of him....he has made it through hell and if he goes through it again he will be strong.....you will too....get mean, get even, cancer cannot win....you must prevail!

johnnyH

Thank you all for your kind words, and encouragements. Without this support group, It surely would be a lot harder. Since Wed. i dont beleive I had enough Martinis yet. But until Tuesday, when I will see the Doc. again I will, he is going to recommend radiation to the brain, I will explore that angle a little bit deeper. But truly, it is the wait that horrific, as an american, i am very impatient, if I am to die, let it be without the suffering, that is not much to ask for now is it???
God bless all of you, thank you so much for your support...............

goingtobeatit

Hi Johnny

Listen to me and hear me well I'm not sure where you live but Go to the cancer treatment centers of merica. You won;t be sorry.

I was also told I had ademo carcinoma anbd they found several spots onmy brain. I have just finished 10 radiation tyreatments to my brain and go back in 6 weeks for an MRI I start my chemo on Dec 3rd and am lookinmg forward to total remission. I like so many others have turned this over to the good lord above it is in his hands now.
I don't like what I have but i am at the best place i can be to beat this. If you have never heard of CTCA look them up. My dr is you want to call him that told me my lung cancer had left my lung and moved but not to any vital s like liver, stomache etc. I fully intend to beat this and you can as well. DO NOT GIVE UP Keep positve and get a second third and fourth opinion if need be but the CCTA is one of the best

Harry

peanutbutter

A man David Bailey who writes inspirational songs about cancer, has one song that tells of a doctor he saw who tells him he has very little time left...the doctor shows him the CAT scan where it is "right there in black and white" David goes on to sing that what the doctor doesn't realize is that he sees in COLOR!!! Look at things in color, JonnyH! Check out his site...PattyK's sister, http://www.davidmbailey.com

PhyllisW

Dear Johnny,
My husband had 14 very long and intense chemo treatments and 30 radiations also, all for sclc. After all that, he had some lesions in the brain and then had 14 radiations to the brain. That cleared up and now there is a quarter size nodule on the adrenal gland and we're waiting to see if radiation will be the solution. DON'T GIVE UP!!!!! You MUST go to other doctors and get yourself opinions until you realize there probably IS more that can be done to extend your life. Your fight is just what you need to combat this nasty disease. KEEP ON TRUCKIN'. Lots of luck, let us all know what you've decided. Enjoy your martinis and try to ignore the stupid short prognosis of your life span. My thoughts and prayers go out to you and God bless you.
Phyllis

Barbara1

Hi Johnny, its ok to vent even if you use profanity. I agree get a second opinion, don't give up yet, take some of that anger and use it to get the right doctors with more positive attitudes.....

Barbara
stage 3b still trying to live, love and laugh..

goldi

Dear Jhonny
I am nsclc stage 4 .My onco .never agreed to tell me how long I'm going to live.He always says that he helps God but he's never going to be in his place and decide how long someone is going to live.On the 9th of November I've finished my brain radiation.Here in Israel they say that tumors in the brain can be cured easily and I don't have to be worried about,so I'm not.My onco has learned radiation in Sloan Kettering and the treatments here are as good as in the States.So don't worry,look at the best part of life and as my American friends say;Live,Love,Laugh
Keep Smiling
Goldi from Israel

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