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Hello, I'm new. AA3

Cando Pax
Posts: 2
Joined: Dec 2013

Hello, my name is Josh. But, I prefer the nick name Cando. I'm a costumer who likes going to conventions and I am 35 years old.

 

Three weeks ago, I had finished my first week of work and came into Reno to stay at my apartment with my father (We share the apartment) And we had just moved in and was still moving things from out of town to here.

 

I went to sleep and then next thing I know, I was awoken by an ambulance medical guy and several other medical people, who were asking me various questions...that for some reason, I could not answer. I apparently had a seizure in my sleep, and wasn't even aware of it. I hadn't even felt anything regarding it.

 

They took me into the Emergency Room, and it was revealed to me that I had a large tumor on the left side of my brain above my ear and that a Doctor name Dr. Song was going to operate on me. 

 

The entire situation was very worrisome for me and my family. My sister from Kansas flew down to be here for my surgery with me, my family, and best friend all stayed for the three and a half hour operation. To me it literally felt like I shut my eyes and opened them up moments later.

 

The surgery went well and Dr. Song was very confident that he got all of the tumor, or 99.9% of it. 

 

While I was recovering, another doctor came in and told me that it was a form and cancer and that my removed tumor had been sent to Stanford to be studied.

 

Today I went to Dr. Song's office to have my stitches removed...there I discovered that a fax had been sent from Stanford explaining several things to me...I was diagnosed with AA3. The doctor who was helping me at the time, told me not to stress because there were several other things listed on that fax that they could not explain but they knew were positive.

 

It was a very long bus ride home with my sister. I broke down in tears while in the elevator and have been having a hard time sleeping and focusing on anything. I'm worried and scared, and will find out more details on Thursday. My sister goes home tomorrow or Thursday and won't be here. 

 

I am very worried and scared, but doing my best to keep my head up and hoping for the best. A friend of mine is telling me not to worry because my surgery went very well.

 

I am doing the best I can, but this has all hit me very very hard and I'm not sure how any of it will turn out. I have no insurance, no job, no food stamps, can't find my birth certificate...etc etc.

 

It seems to me like every time I start to get back on my feet and improve my life, that I'm hit with something harder and harder and harder. I'm not sure how to deal with this and I'm very nervous and scared. I've read the fax several times, and looked up everything mentioned and I'm not entirely sure what it all means...and waiting until Thursday is going to seem like a long time.

 

I've been praying almost all day today for god to give me the strength I need to deal with this.

 

I was also diagnosed at Diabetic and have been adjusting to deal with that. I lost my Mom to Diabetis four years ago...

 

This just all hit me so fast and soon, that I'm not entirely sure how to deal with it, or how to mentally and emotionally deal with it...I'm scared and worried.

 

If any of you have any advice, I would appreciate it. Thank you.

mccindy
Posts: 82
Joined: Jun 2013

Hello Cando,

It sounds like you've got a sudden dose of overwhelmed!  I know how scary it can be to receive a cancer diagnosis.  It sounds like your surgery went well, and it's wonderful to hear you had a gross total resection (what they call it when they get nearly all of it out).  While it's true the tumor might start to grow back, it's hard to say when that will happen, so try not to be too scared or anxious all the time (of course you will have moments every day when it gets to you, but try to give yourself those moments and then move on).

As far as the rest of it, take  a few deep breaths and take each thing on, one at a time. You should be able to get a copy of your birth certificate by contacting the courthouse in the town where you were born.  There is usually a minimal fee for this, but you can get a copy.  As far as finances, contact your local Social Security office.  A diagnosis of brain cancer automatically qualifies you for disability coverage. 

One thing I would suggest is to seek the services of a grief or cancer counselor.  It's not shameful to admit you need help, especially when dealing with a diagnosis like this.  It wouldn't hurt to seek a second opinion at a major brain tumor center, if you aren't already going to one, just to be sure what your next steps are.  Often the surgery is followed up by radiation or chemo.

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Goodmorning Cando,

     Your situation sounds just like my son Benjamin's, and everything worked out GREAT, Benjamin is cancer free, and back to normal, working, and enjoying life to the fullest.  First thing is to breath, being dx with cancer is devastating, you need to just fight through and conquer, nothing is impossible.   

     Having no insurance is something you should not worry about- head on down to Social Service, apply for assistance, (health insurance,

food programs, and housing programs).  Health insurance will pay from day one of your hospital stay and any medical bill after.  Better

coverage than insurance companies offer.  Also, you should have been visited by the Hospital Social Services Rep- she/he would have had

you sign up for all the assistance you need and also, have you apply for Disability(which takes 6 months or more).  Social Services kicks in

right away, so this will relieve some of your worries.

     Have you started your treatment plan- met with oncologist and radiologist.  Remember to treat aggressively, even though 99.9% of your

tumor was removed, cancer cells can still be viable.  Aggressive treatment is better than taking the wait and see.  We look at the wait and

see as, once it grows back, then the real fight for life is on.  Make sure to keep a notebook with you at all time, write your questions down,

treatment plan, doctors advise, medication and appointments.  You will beable to refer to you notebook when needed.

    Meet with your family, discuss your wishes.  Family is a great support system, along with friends, church, neighbors etc.  Also, some

communities have cancer support groups that meet weekly, join one, it helps to have others move along this course in your life.  These

members have been through cancer or are going through cancer, knowledge is valuable.

     Remember to keep a positive attitude, eat a balance diet, excercise(even if it is a short little walk), keeps family and friends in touch.

Never give up, and FIGHT-FIGHT-FIGHT!!!!

Cando Pax
Posts: 2
Joined: Dec 2013

I met with my neurologist and she explained the entire situation to me. She is going to be starting me up on a Radiation and Chemo theropy six week program. Every week day for six weeks.

My father and I have decided to completely clean the how and make it very clean, and make anyone who comes over to visit to wear masks and latex gloves and take their shoes off at the door. Just to be on the safe side since the chemo may drop my body's ability to fight off sickness.

They were quite surprised with how well I recovered after the surgery and don't think the chemo will that bad on me, but will assign me medication if it does effect me.

My first appointment will be on the third where I believe they will take another MRI and get the plan set up for the radiation. 

It has been very tough on my father and I, after the news was broken to us about AA3, we both broke down pretty hard. I have plenty of friends who are offering prayers and good thoughts and voluteering to help any way they can. 

I'm not going to give up at all...I'm still just letting everything settle in and trying to adjust to the thought of it all. I do plan on joining the local Cancer Meetings to meeting others who are going through this as well. 

I have about a month before the treatment starts and I plan on doing a few things before it starts, because I may be pretty bed ridden while going through all this. 

I will fight the best I can, I will not go down without a fight...I can promise you that much.

Rofffamily
Posts: 3
Joined: Sep 2013

My husband has an AA3 in his brain stem diagnosed in march 2013. We are living like we have never loved before. It may not be a long life (hopefully it is ill be though), but it certainly be a great one. Keep us updated.

mccindy
Posts: 82
Joined: Jun 2013

how true.  Since my diagnosis, my husband and I have become closer than ever, and our relationship is even better than it was before.

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