update

OK, I know I have not posted here and have been putting short updates on face book. So I will try and catch things up,
1. couple of weeks ago we had a wonderful Disney weekend thanks to family and friends and my extended family, you know who you are. I was told that the last 2 tumors that were left to pull out would probably kill me so they said the first would be in about 5 days. So we loaded up and went to Disney and had a blast. Made it thru the whole weekend and as promised on Sunday night I had my first episode. It was bad, I don't remember much of it. I was layed up the next day in very bad shape , heart went nuts, breathing went nuts and my eyes and feeling in my legs yeah was not happening. Tuesday  morning I have another one,just as bad. I finally get scanned on Thurs and one tumor pulled out. Yeah but the other moved closer to my brain stem. Since that I have been having all kind of issues, insomnia, vomiting,muscle twitches and some eye problems. This all did great things for my balance. But I evened out and my white count stabilized. Things were looking better, and then....
2. I had a couple episodes that were different as in the pressure in my head was excruciating but moving from the base of my skull suddenly to the front of my head. Not a pleasant feeling. Then my breathing got weird, as in I would stop for a short time during the episodes. The is getting worse , to the point that the doctors are calling in favors from other doctors to see what can be done.
3. I am left with waiting for the docs to figure something out. The tumor is moving in deeper to the brain stem. So how do you treat it with  out killing me in the process.
4. Decision made. Gene therapy worked in the past. I have 5 tumors left and the only on attached is at the brain stem. Due to the complications getting worse the decision was made to try the gene therapy again. Now injecting the 4 in my head, easy, open the bolt in my skull, reinsert the ICP catheter to adjust pressure while the inject the therapy. Now the brain stem is different, that tumor is very active, moving and growing, So...
5. how to harvest without putting too much pressure on my brain stem. Today I had the harvest done in a way I would not have thought of but damn if it did not work. They made a tiny laser incision in the front of my neck and threaded the camera and biopsy tool to the back of my neck,up my neck or rather spine and into the tumor. It worked! All the pressure was mostly in the front of my neck where they were shoving the instruments so their was not enough pressure built up to cause a shift or move the tumor. Thank GOD for that miracle, so here I lay with a bandage on my throat and unable to talk above a whisper. Eating will be fun for the next couple of weeks. Only bad thing is I am sick and was on antibiotics a day prior to the procedure today. So we don't know how good of a strand will be made.

In 2 weeks it will be ready to inject fully into the 4 tumors on the top of my brain and the plan for the brain stem is to go through the neck again and inject a little at a time over a couple of weeks in hopes of the tumor separating from my brain stem with the least amount of damage as possible. It will be tricky and have to be monitored closely for its progress. But with a lot of luck and another miracle it will work and in 90 days give or take i can say remission.

Hopefully this brings everyone up to speed. I plan to work during this for as long as the office will have me. I have a lot of payback to make good on. If any part is confusing or out of order let me know. I should know better by now to not do this while I am medicated, anyways that is the jist of things. Yes it is a long shot but I never make things easy so,why start now. The breathing is my main concern right now, it gets a little dicey when I do sleep. But the tumor is causing some major insomnia. Love all you guys who are fighting and praying with me. I will post again after the next procedure.

SANTA i WANT A NEW BRAIN!

OK, so I am going to dump this here in hopes that it takes a load off of me. On Monday I found out the latest from test results. Friday was especially bad because I had a episode as we call them now that was absolutely horrific. I know of no other way to put it. The pain was so immense that I could not stop screaming or crying and to top it all off Megan had to be there. It took me 3 days to even start to feel some what normal after that one.
So I was not surprised when they would not give me the scan results Monday morning. Knowing that the only time they don't, is when something significant has happened. So I go to work and wait for the call. I leave work early to get the news and this is what I get, a bunch of I don't knows and it doesn't look good.
To be more accurate I am told that my brain shifted back into place all by itself on Friday with the help of one tumor pulling out. Wow a 1.25 mm shift and I am still awake and functioning, I am impressed with myself. The five tumors are shrinking at a good rate and don't seem to be showing any signs of slowing down. There is some brain tissue damage and it is a little worse than they originally thought. Looks like my headaches, balance,speech and memory issues are going to be permanent. I was kinda of expecting that. Then they drop the bomb.    They do not know if my brain can handle another shift. They actually think it is likely that if the other 2 tumors pull out that it will severe my brain stem. Why I ask, because with 5 tumors shrinking and keeping my brain in a constant mode of adjusting ,which we are all in anyways I put out there. Yes they say ,but I adjust more than normal due to the tumors and my head has been through alot the past couple of months. This I already know, I was there. Then I get the news that maybe we all got a little over excited with the gene therapy. I say huh? Well we don't have answers and are writing the book by me, yup knew that too. Maybe injecting the tentacles the last time was not the best idea,because it has helped the tumors separate and leave nothing behind but in the long run with a cancer that regenerates itself so it is never fully in remission , the extra therapy may have been  too much. Well there is nothing to do about it now. The damage is done. In theory the gene therapy lasts 90 days,which I am at the end of. But could it last longer? Yes. So where does this leave me. Do we do another round and kill of the rest of the tumors or am I stuck waiting to see if they will go away or regenerate putting me back at square one. The answer I get to this is, my brain has been through so much as of late that the pressure is unstable at best. I still have the bolt in place to adjust ICP . I think this a good thing, they think even putting the catheter back in may cause damage. Since things are still shrinking and changing no more gene therapy until I start to go backwards. It has become too dangerous to my brain stem. What about the 2 left,what happens if they pull out? Well there is a 90 % chance that will occur and along with a brain hemorrhage or a severed brain stem. as minimum damage All of which leaves me dead or a quadriplegic at best. So what do we do I ask. Wait,pray,hope and get your affairs in order. HUH? Make my living will, health care surrogate a regular will. Spend time with the people who matter the most. Work if I want to. um yeah I need my insurance.plus they don't think it will hurt me,will only keep me from being at home waiting for that other shoe to drop.
So I am left with my 10% chance of being OK and I know that number is a high estimate on there part. I have made my living will. I am trying to get over the fact that my life is down to a 10% chance of survival. But as the joker that I am, I have asked that if I have to be a vegetable please make me beer batter corn. I know I am not right and now we know my brain is not right so I don't give a damn if you  don't think it is funny, I do!!!!
So I am waiting for my supervisor and boss to get back from vacation and paternity leave so we can discuss what they would like to do with me work wise. I want to keep working because I accept nothing else but making it through but I also understand I am a liability.Business is business and friends are friends. I am OK with this because it will work out how it ia meant to.
So I have had a few miracles thus far and I am praying for one more.

SEVEN DWARFS

OK so I am down to 4 tumors on the right side of my head and 3 on the left. The ones on the left are unattached and the right are still attached. The one next to my brain stem disappeared altogether but caused my brain to shift ore. I have a total 2 mm brain shift but no damage to my spinal cord.The last 2 weeks have been hard. I have not been able to work much. I have not been able to keep much food down and I am losing some weight, that the doctors are not happy about. The headaches are back on with a vengeance. My jaw sometimes goes numb and balance, well I am not falling but sometime I am such a angle that Shane is not sure how I am still upright.The catheter is gone. This has lessened the pressure in my head but it also took away mt safety net. Not sure how I feel about that yet. The hope is the 4 tumors will pull out with such force that they will correct the shift. I can't wait for that pain! My leukemia is bouncing between  12 to 20 on the white count. I am getting chemo 2 times a week and it is taking it's toll. I am tired, moody and just all around feeling of yuck! I have never really felt so bad to put myself in the I am a cancer patient role but this past week has firmly set me there. I am trying to get out of my funk. But it is hard. The headaches, the balance the bone pain the vomiting the fatigue is dragging at me. i want to go out on the weekends and do stuff with my family but I can't. It is too hot and the sun does not agree with my meds but oh how I would love to dive or get in a kayak with the rest of family and my daughter and have a good time. It is getting harder as Megan gets older to explain to her what is going on why Mommy can not come with everyone. Oh well just another hurdle to overcome. Again I ask how many do I have to do? enough pity party for me. I will keep fighting and keep you updated on my 7 dwarfs. Oh yeah there is no bashful he has been replaced by painful who I hope will leave me soon, you know Hi Ho Hi Ho it is off to work I go , I got a new song Hi Ho Hi Ho out of Julie's brain I go! OK that is my one lame ass joke. Best i can come up with. More later this week as I get a work up today.

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.

update on my life

So I have had a lot of trouble bouncing back from this last procedure.I had a fall out at Easter and just as I thought I was getting a better grip on the pain and headaches.I actually had energy yesterday at work. Today not so much. It started out with a but load of left leg pain that by the time I got to work turned into a leg that would no longer support me. So after fessing up to my boss and my Dr the decision was made for me to park my butt in my work chair and let others help me today. We all know that that went over well with me but because the pain was so bad I actually did as I was told. As the day went on I started to get foggy head which is usually the precursor to the head pain.Well I am still waiting for the head pain. My bones feel like they are twinging like muscles would. That is the only way I know how to describe it. Whether or not I get to experience the pain that goes along with a shrinking tumor remains to be seen at this point. I did have a scan and white count done.
We will see what happens next during the next few days,as I want to be able to dive next weekend. I know how stupid am I, but it has been a year and I am ready to be under water. So next update to come soon. I will try to blog more and keep you all up to date.
Love your favorite survivor
Julie