CANCER SUCKS!!

OK, so here I go again. The bearer of 50/50 news. I am totally excited that 2 tumors and there tentacles that make them able to grow back are gone. Totally bummed I can not celebrate because I am just too dang tired! Got myself a brand new ICP catheter. Wish I could have a shunt placed but noooo I have to have 2 stupid kinds of cancer. One that makes it harder to treat the other. If the leukemia would behave and stop attacking things I could have the shunt and be done with the catheter but for fear of my body attacking it, that option is off the table because it would lead to more harm than good. I just really want the catheter out because it hurts, it is a pain in the but to take readings from and I feel like crap every time they have to adjust the pressure. But I am happy that I am still functioning, that I have not had a seizure problem yet (knock on wood). I am very grateful that Dr. Stoverink and Terry are allowing me the time off I need to get better. I am grateful that they are pushing me to take the time I seem to keep refusing. I guess I am worried that I am not stimulating my brain enough but also not resting enough either. I am having a hard time finding that balance. I guess I am getting to the point where I am getting mentally drained. I hate that cancer and the treatment have so much control over my life. I want to not have to worry about throwing up everything I eat, am I hydrated enough, what will chemo do to me today, what was it like to have hair,when will my daughter be able to really play with her mommy without someone having to say be careful not to hurt me,go outside without worrying about the side effects of the sun, walk without weaving, talk all day without worrying that I am not making sense. I don't take any day for granted knowing that it could be my last but sometimes it is hard to be positive and hard to be brave because being sick just plain old sucks!

bucket list

it has been requested for me to publish a bucket list. Not that there is anything amazing on it, they just require time.Bucket lists don't have to be crazy the thing is getting them done because the most precious thing about a cancer patients life is time. You can adapt and achieve anything but time is something noone can give. so here goes.
things I want to do
1. DIVE
2. TAKE MEGAN TO DISNEY
3. SEE THE GRAND CANYON
4. GO TO VEGAS
5.GO SHANE'S HOMETOWN/PHILLY
6.GO TO BOSTON
7.GO TO IRELAND
8.LEARN TO SKI IN THE SNOW
9.SHOW MEGAN SNOW IN COLORADO
10. GO ON A CRUISE
11.PAINT/DRAW SOMETHING BEAUTIFUL
12.BAKE LIKE A WILD WOMAN AGAIN
13.HAVE AHUGE PARTY WHEN I AM IN REMISSION
14.STRENGHT AND TIME TO DO IT ALL

Not very interesting,not very daring but it is what I want to do with family and friends the most imortant thing is doing these with the people you love.

Cancer sucks then something goes wrong!

So I suck, I know I have not written in awhile.  Well the good news is the gene therapy is working, went on my first dive in over a year and it was great. Why is it when something good happens something bad always seems to follow. So about a week after my dive experience maybe 2,OK I don't really know the time line here, you know short term memory,what's that? I had one of the tentacles pull away from my brain. Yeah good right? No worse pain I have had so far. It lasted twice as long as usual. Then I don't the results of the scan right away about how this great thing has happened. Here we come to the bad. The tentacle of the tumor happened to be the one on the left side of my brain close to "break" in my hemispheres. Why did we not want this to happen, oops side effect  BRAIN SHIFT. Basically that means that my whole brain shifted 1 mm to the left. Not good, it does not sound like much but 1 mm in your skull is huge. I have cushion which is currently breaking apart. That would be another tumor that is currently providing some cushion between my skull and my brain,about 3mm worth. When that tumor dissipates it is a guessing game as to weather or not my brain will shift any further. How I am still conscious with a 1 mm brain shift is not know at this point. So the temporary fix is a catheter placed in my head to read my intercranal pressure. My current ICP is 17 which is too high,that shows some brain ischemia,again how am I still awake and function, we don't know. Last week my pressure was 19 and they had to drain some fluid off. I made it half thru one day and that was it. I temporally lost control of my left eye. As in I could not open it by myself.I was extremely nauseated and had the joy of trying to not throw up all day because that increases the pressure. A good sneeze or cough could shift my brain more. Plus the day that I had the catheter originally placed we moved to a 1st floor apartment. I spent the weekend with my sister and brother in law while everyone else moved. So now the current problem is that we still do not have Internet,we are borrowing off of someone elses wireless. I  am suppose to be monitoring my head at night, you for the problems like not breathing and things like that. I am able to get some partial readings across but being staged back at 4 cancer and the fact that I should not be awake in this world at this time the doctors are letting me stay at home and work. Why because I am defining the odds and I thank God every day I wake up. But really isn't enough, enough already. on the flip side I can say that the tumors are still shrinking. I am still functional. Yes the headaches are worse or I should say different because the catheter is a very weird feeling not to mention the bolt in my skull keeping the spot open. So my left eye has a mind of it's own now.I lean heavily to my right,especially when I am tired and my memory really does suck. But for some reason I am having some lets say mid term memory improvement as in I can remember something from 2 weeks ago but not yesterday. Very weird. But that is what you get when  new book is being written on medicine because you are changing the odds. So I am still here.I am still fighting and still amazed at everyday I make it and thankful to everyone who helps me daily.