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 Oh yeah there is no bashful he has been replaced by painful who I hope will leave me soon, you know Hi Ho Hi Ho it is off to work I go , I got a new song Hi Ho Hi Ho out of Julie's brain I go!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

Latest procedure

Ok so the latest procedure was April15th. Yheah I know I suck for not posting. Five tumors have detached and they went ahead an injected Four of the tentacles with the protein.I had a harder time this time bouncing back form the surgery. I thought I was over the hump until my Easter came to a grinding halt around 9 pm. We had a lovely dinner,easter egg hunt and bubble war at Jen and Aaron's house, a little after 6 I started to have some pain so I laid down. 2 hrs later I was woken up told it was time to go. by the time we got home I was in a manic state.Keep in mond I do not remeber most of this. Apparently I had the need to seperate all the Easter Candy into seperate bags, I was stopped from doing that and Shane tried to get me to read and I could not do that. So he gave my drawing stuff found a picture of a lion on the computer for me to draw. I have no idea how this picture came out as I have still to look at it. I sat in the rocking chair talking to my computer lion and my drawing repeating that I could do this I could get a grip. Apparently I cussed enough to offend Megan. Then my mom took Megan to her room and read to her at the sametime I threw the drawing stuff down and ran to the bath room. The worst pain of my lufe hit me. I have no words to describe it, I heaved so much that my chest hurt.I felt like ther was a hot poker boring into my skull. God love my husband who stood behind me,watched as I threw nothing up but bile in a violent way as I cried for the pain to stop and held my head. He was waiting for the words take me to the hospital. I never said them. He helped me get into my Pj's and into bed I went with a crying Megan. I woke up in the morning with memory of the pain,and him being there. A little fuzzy on the manic episode that scares me. And I do not remeber most of Monday other than my text messages I sent to work and 2 calls, one calling into work but have no clue what I said. 2nd call oncology,sorry no scan until next week, rest and we will assume this was something breaking apart.
I am all for tumors shrinking and breaking apart. I know I get restless before it happens,so far I have handled the pain.This new manic episode scares me because when you go crazy the after thought is what if when that tumor pulled away what if I did not make it back to the other side. Now that things are happening it is a good thing but not knowing when or how they are going to manifest are starting to worry me. For the first time it is not lost on me that I could very well stay in a manic state, I could stroke,get a anuyersum,lose my sight or hearing or any other nuber of neurological problems.
I know before I have said I will live with any side effect that it gives me in order to live longer and get better. But know after Sunday and having that big of a memory lapse, I am not so sure.
So it was back to woek today and hopefully tomorrow I will find my groove again.
Did I mention CANCER SUCKS and I DON"T WANT IT ANYMORE!

I hate being sick

sorry I have not posted in awhile. I had another harvest.My white count was 8 at the time of the harvest and had alot of healthy cells in it. So the doctors are optimistic that this strand of therapy will be even better. I had a few problems during the harvest, like they accidently swabbed my head with betadine wich I am allergic to. So now my bald head is covered in a rash. I have had alot more headaches and they are getting harder to control. I know it is a good sign because it means that something is seperating or shrinking. There is a concern about one of the tumors that is at the midline of my brain and is very close to the cerberall fluid. After speaking with my oncologist and some co workers we have decided that after this procedure we are going to wait longer than the 3 months that the cancer soceity wants. I am going to give this longer to work and see how good the outcome is. If things don't progress I will restart treatment.
As of right now my white count is up to 13. The headaches are a constant all day and I can barely control the pain at times. Of course it is worse at the end of the day. but my balance is slowly getting worse. Due to the pain sometimes I am double and triple checking things at work for fear of messing up. I am extremely lucky that all I have to do is ask Dr.S to check me when I am having a hard time and he thankfully does. I am sure I will be making this up in babysitting time!!!
I got a little freedom by being able to drive on Monday but I took it upon myself to go food shopping after work. The extra errand gave me some problems and my mind started to wander. I had to stop and get gas and went to the most out of way gas station plus I could not focus by the time i got home. then the mother of all headaches hit. I have not been able to break it since. I goes from a all over dull ache which I can handle to a all out sharp stabbing pain.
Chemo has started up again, hello nausea!!! But I am taking my phenergan and stronger pain med at night which has helped me to keep more food down. But I feel bad as always for my family and daughter as they bare the brunt of my worse pain and attitude.I still am hopinf for the day that I will be able to actually do something outside the house with Megan.
So procedure number whatever is scheduled for the 14th or 15th of this month and then we will see. My husband and brother in law are planning a dive trip for me for mother's day. I am excited because I think the pressure change might actually help the pain,because when I hold my head the pain gets better. So here is to the pain that is making it all better and hoping for my 2nd miracle.