gene therapy

so.ihad my surgery on wednesday.it took all of thirty minutes.i had six doctors,and two laser and was closed circuit thru tv to all the cancer institutes. pretty cool.ihave been in bed for the most part.i have cheated a little and have been caught and benn yelled at. monday i get to get up and have a phone conferance with the doctors to see about going back to work. they were pleased with how the procedure went. now we all wait for something to happen. no scan untill the end of the month.have some wicked pressure in my head asto be expected so i am told. balane is questionable at this point but whose would not be after three days in bed.so her to hoping some kind of change in the next month so i can continue treatment.sorry about spelling and grammar not so hot today.

UPDATE

OK, so I am currently radioactive free. Unfortunately my coordination and headaches have gotten worse. Gene therapy arrived from Orlando cancer society today,one more test to make sure it is still working. I will have those results tomorrow. Unfortunately the laser at the cancer institute in Ormond is currently not working so I am waiting to see if it will be fixed in time or if we have to scramble to move the procedure to Halifax or to Ormond main hospital. Lots of info coming in tomorrow.

tumors why won't you behave

OK so about 4:30 pm on Monday I got a stabbing pain in head the left front  to top of my head. I called my doctors. On my drive home the left side of my face went numb,a few minutes later the doctors call>>> go the hospital they will be waiting for at Bert Fish,closest place I was  and get a MRI. OK. MRI front tumor has grown 1/2 inch longer and 1/4 inch deeper. This week has been loads of fun I am walking into walls,tripping over thing and just uncoordinated in general as well as my speech is worse. It use to be bad when I was tired and I could hold my own during the day , not so much anymore.The increase in neurontin has helped with the pain,but it did make me crazy for a few days,and i still tend to gab to much at work. I am trying to pick up on clues since no one wants to tell me to shut the hell up. So I am a little bummed. I have everything riding on this gene therapy. I hope nothing goes wrong. I hope I get to the hospital in enough time for it to be implanted. I hope I don't get out of bed for 4 days. Crazy they are not keeping me overnight. But I know why,they just have not expressed it straight up but have hinted around it.I am a stage 4 no where to go from there but down and that is a unknown right now so I get to go home to be with family and friends instead of staying in the hospital, just in case the surgery goes bad.If it goes well then we wait 3 months and pray for my miracle that there is some kind of small improvement in at least one of the tumors.That way I can still be treated, if there is no improvement then the treatment stops for the brain tumors. Their is nothing else to do. I will get chemo for the leukemia which may help some. And Shane I will have to sit down and make the hard decisions that we have been avoiding.I am truly in God's hands, I believe he has a purpose for me, I don't know what that is. But again I am looking for that miracle to come to me and make me cancer free one day in the near future,I hope.
I am still having problems with the neuropathy and pain but i am managing, I am tired, I have a hard time concentrating and speaking and equilibrium, what is that? I am not controlling the headaches at all anymore,if I get the edge off of one I am doing good. Dr opinion is this is from the growth of the tumor. I am still on chemo injections and pills but no more radiation.As of Monday I still had 4 tumors with 2 seeds a piece left. Radiation would prolong there lifetime and delay the gene therapy. So we wait, hope that not too much damage is done while we wait. Hopefully either wed afternoon,morning,night or Thurs sometime I will have my surgery. Basically Monday scan, no seeds left, finish making protein, as soon as it is done go to the hospital to have it injected.There is a very short half life on the and the window is small, so when they call and say it be ready in 10 min I go. that is about all the warning time they can give me, so everyone is on alert to drive me fast to the hospital. So that is the plan.
On a funny note I now have a chauffeur, my sister has kindly enough offered and is taking me back and forth to work. We are all scared of side effects on the road.Also we don't know how the therapy is going to effect me so I do not want to be driving.My family is great and I am glad they are close and can help me. My extended family is awesome too, even though they do too much,um that was for Jay and Joi, you know what you did. It is greatly appreciated and allowed for Megan to have a special Christmas and for her to be able to have a great birthday. I love you guys.
So here is to fighting the fight  round whatever. Lets see who wins. Place you bets here!!!!!

UPDATE

So I met with the American Cancer Institute yesterday in Ormand. I have 4 new doctors that will be performing gene therapy at the end of the month. I have upgraded to a stage 4, BOO. But the doctors were optimistic that I was still working and functioning well. Other than the speech getting messed up every now and then and walking into walls and such. They want me to get better control of neuropathy and Raynard's so it is easier to gage how I am doing after the treatment. So they have uped my neurontin, yeah more craziness from me! Good drug for pain but hell on your cognitive ability. I am still allowed to work. I went several cognitive and physical test so they could gage my range of motion and cognitive ability. Needless to say it was a long visit that ended with some pain but they were nice enough to give me Demerol before I left. However the shot took effect much faster than we had anticipated and I had to call Shane to keep me awake for the last 10 mins of the drive home. Basically they have no real good answers as to how the therapy will affect me because no one has been treated for a stage 3 or 4 astrocytoma brain tumor. If the injections work, and the tumors do shrink or turn begin then I could experience a array of problems.The tumors are in too many different spots so I could have speech problems reflex problems,cognitive problems. We just don't know. The good news is that as long as there is some sign of improvement in the next 3 months they will continue with the treatment. If not than the hard decision of what to do next comes up because this it people. Either this works or treatment stops. So 50/50 news once again with alot riding on the next 3 months. Expected date for surgery is the 26,27th. MRI on Mon the 24th to see if the seeds are gone as soon as we have confirmation of that the gene therapy will be manufactured in enough quantity to inject all 10 tumors and when they say come, I go no matter what I am doing. I will keep you all posted. Love you, thank you for all that you do for me.

Things are getting interesting

So Friday I woke up not feeling quite right,after roaming the house for about 10 mins I ended up in the bathroom, heaving my guts up with a headache like someone was trying to pull my skull apart. Hello to the pain of brain tumors separating or shrinking. Bad news is we thought the last 2 tumors had separated,well only partially,BOO. So I am meeting with the cancer institute on wed to see about getting my gene therapy and the ins and outs of that. With any luck I will be able to have it by the end of the month. Little scared about going through the pain of tumors breaking apart or shrinking. This is my goal and my only way to get off that damn timeline.But the pain is a scary thing no having experienced twice. It drops you to the ground you can't see anything but halos of light and you vomit so hard but nothing comes up and then your chest hurts for 2 to 3 days after, you end up in bed for at least 1 day because it is that debilitating.Have I mentioned lately that cancer SUCKS. More to come after the doctor pow wow.

New Year

OK so I am hopeful that this year is a whole lot better than last year.I am hopeful there is a  miracle as always for the gene therapy to work. I am hopeful that I will survive the split of the tumors. I am hopeful to be able to dive this year. I am hopeful to be able to run with Megan this year. I am hopeful that I will be in God's hand and everything will be alright. I have asked nothing of the new year but hope. I ask nothing more from friends and family than what they already give me, support and love. On the up side I did start chemo by pills and injections and am getting enough prednisone that I actually am hungry. It does not always stay down but at least I am wanting to eat now. Sour or sweet stuff makes the metallic taste of radiation go away faster.Hello candy my old friend. I won't have tooth left in my head when I finally make it to the dentist. Oh well. Pain and headaches the same as always.Working on a driving schedule so I won't be on the road if the tumors separate. That would be kind of bad. I have my first teal sit down and talk with the American cancer doctors soon to see, how we are going to proceed.My neuropathy is a little out of control so I got to get in to see someone about that soon. Other than that nothing new till new scan in about 4 hours. Good night again, update to follow.