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

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.

CANCER SUCKS

OK I am extremely happy about the progress my team of doctors is making. I know there is going to be a big publish done on my medical findings and maybe I will write a book on the ups and downs, who knows. But damn, I know the pain is a good thing right now as is the worsening side effects. Then again I should have seen today coming.
Yesterday at work I felt a little off in the morning but it went away before the patients even started to come in. My balance was off and on all day but nothing out of the ordinary. So this morning when I had a hard time getting up and when I was finally able to pull my big butt out of bed i was kind of spacey, then before I made it from the bedroom to the kitchen I had to throw up, so down the hallway I went and barged in on whoever was in the shower and proceed to vomit phlegm and bile. Yeah one of my favorites. After that I tried to make it to my mother's room, but ended up on the floor because at that moment my body decided my legs should be numb and down I went. My mother had to help me into a chair as I hear my daughters voice behind me saying mommy why are you on the floor. Apparently I was looking for something. Found it just in time before she got down to help. Mom calls work. I do the best I can to stay seated and help Megan get ready for school and side step the questions of why I am not ready for work yet.
I get into bed and start the calls to the doctors. They do not know why my brain feels like it is either falling out the back of my head or out of my forehead depending on how I am holding my head. Maybe the tumors are separating more,maybe they are shrinking,or maybe they are joining. But with a white count still hanging out in the mid threes, they are hoping the extra stress of the pain will increase my count. So we are waiting again,with no answers.
I know working is helping me. I feel bad when I have to call in because I can not function. I know that everyone at work is aware of the situation and I am grateful they have let me work.I am thankful that most of these episodes have happened at home and not work.
I know I should be nothing but happy about the progress of my status, But I am tired of apologizing to work,my family,my daughter. I am tired of the pain. I am tired of my head constantly hurting, I am tired of bouncing off walls,of falling,of not talking right, thank you spell check or these blogs would make no sense. Is there a point when you just get too tired to fight. I want to get my next miracle if it is granted to me but God while you are at it, please give me some slack to stop feeling negative and so damn completely off balance.

GOOD NEWS

Finally after everything I have some AMAZING NEWS!!!!! After my scan to see how the gene therapy has been working the results are in!!!! SIX tumors have separated from the the tentacles that are feeding them!!!! They are not getting blood flow so they can not grow right now. They other 4 have not grown in size. My white blood cell count is 3.2 so they are waiting for it to  get to normal before they harvest again to  make my strain of gene therapy. the doctors are very happy, they were not expecting results like this and it all a little amazing for me. For right now, nothing changes we wait and see. I will still have all the side effects I am having now, headache,mobility and speech problems. This is because the tumors are still there. They are not growing and can't as long as there is no blood flow but the pressure is the same until they actually shrink. So we do not know what side effects i will be left with in the end. But bottom line is SIC tumors have separated!!!!!! The doctors are excited, they are ready to publish because these are results no one was expecting!!!!!!
More good news I got signed off to dive once again. With a few stipulations, take my blood pressure and pulse ox before I dive and be smart about the depth and the where. So next lab draw is next week and as soon as it is normal they will set me up to harvest and when the protein is ready they will inject it again into all the tumors in hope of separating the last 4 and shrinking the 6 that are already separated.
So keep sending all the prayers and good luck because I need them. I am finally looking at the other side of a tunnel. Not the end but at least I know there is another side.

So, I have had the one trip to the er for chest pain that I have everyday now. The headaches are getting worse. They feel like a hard spike being drove into my head at any number of different points, at a number of different times. Before holding pressure had helped but now if I press on one area another starts to hurt just as bad. Even the skin on my head is super sensitive and hurts sometimes just to rub my head. Next scan is not until the 8th. The general consensus is that the pain is because the main part of the tumors are being pulled off of the tentacle part. I am having some speech issues more than usual, my patience is non exsitent and wish I had a way to not speak at all so I would not accidentally hurt people but that is not to be. also by the end of the week I am stumbling and falling more. I have days when I can keep nothing down or I am starving and eat too much. Bone pain has picked up this past week and I am eager for my next scan and white count. I have to schedule a harvesting but we are trying to get my white count in better shape so the new strand of DNA will have less cancer cells and be more potent.I am happy that the therapy is working but the side effects are hard.There is a question of whether me working is helping stimulate my brain for better results or are the side effects too much and I need to stop. No one has a good answer for this. I will be happy if I can get rid of the headaches and joint pain. I know somethings are permit now like the Reynard's disease, neuropathy and a fib. I am hoping the side effects of the speech and mobility get better and the headaches at least go down a couple notches. So a lot to happen on the 8th.Harvesting is the easy part but the next procedure has me worried because at the very least if it works or even better the side effects will be worse and they are not that pleasant to begin with. Oh well. God never gives us more than we can handle  Right?????

Cancer sucks the BIG one!!!!

In trying to protect myself from daughter's strep throat ,I was placed on antibiotics, So my nice white count of 4 is now a 2. and what do get when you are on antibiotics with no white count to talk about. THRUSH.Let me explain it is a thick nasty white coating on the tongue that makes everything taste like shit,It causes mouth sores under your tongue and down your throat .Even water burns going down. Then you realize that you can not swallow correctly because everything is swollen. try taking your 26 pills when you can barely swallow. I feel a overwhelming need to brush my teeth all the time and that the medicine is making my breath stink.No one has said anything about that yet so I am trying not to test that theory.So I am hoping that the thrush will go away soon with the swish and swallow and yes I cheat and spit it out sometimes. At least this not a permanent side effect just a annoying one. But I am trying to look on the bright side, as long as I have the thrush my white count is too low. So if heals slowly (UGH) my white count will come up slowly,hopefully at the right time harvest from again to make my next batch of protein. I kind of feel like a wheat field,get it harvest the grain to make bread. Ha I laugh at my own stupidity.
Anyways the headaches are getting worse ,more centralized to certain areas for a few days then they move to another spot.Oddly enough my hair is growing like crazy since I having the protein injection,however I can't even rub my head without it hurting.Sometimes I still have to have Shane put me in head lock just get enough pressure to make bearable, Not sure why outside pressure helps , but it does.
SO I should have a scan in a week maybe 2 and see what we see. My Raynaudy's is out of control right now which is making my feet hurt and feel like blocks of ice. The neuropathy pain is spreading and sometimes makes it hard to use my TENS unit to help alleviate my pain. And as a bonus my walking is a sight to see, I am all over the place. Hope no one gives me a sobriety test. Speech is OK except I look something sometime like say Megan's lunchbox and I will point at it and point at it but just can't get out the words Meg's get your lunchbox. It is happening more often is a true frustration. I am glad that I no longer work in the ICU. Don't get me wrong i still use the tricks of the trade in the office and miss the intensity of it. But I can not imagine standing beside a bed and pointing at a monitor or iv pump and not be able to get out what I need. at least at the office they all know me well enough to understand my own version of sign language and it helps when we all laugh about it. Don't think I would have that at some of my other jobs. It still amazes me that after only 6 months I have been excepted and treated just as I want to be. Hell if I can't laugh at myself especially with those who see the worse I might as well let cancer win. as I said before I run the disease it tries to run  me and has had it's fair share of putting me down but I can always count on family,friends,those close to me to lift me up with something foolish and funny.Cancer is not a joke but I refuse to live my life around cancer as much as possible. Some days it wins and keeps me grumpy,painful and in bed. Other times I almost feel like my old self.
So her is to CANCER,  YOU SUCK and WE ALL KNOW IT!!!!
Say the protein is working and it will.Pray the protein is working and it will. Believe the protein is working and it will. If you say it enough IT WILL BE TRUE!!!!!

FAMILY

So family comes in many forms. Your flesh and blood, your friends and your co workers. I can say that you can be truly aware of who you can consider family until you have a life altering event. Every one initially shows concern and wants  to help. Then as things get bad your true family comes out. The ones that stand by you as you slowly go crazy from being sick. They are not the ones that can only discuss you being sick but the ones that keep it normal. The ones who know that the attitude you are giving can not be helped and look past it. The ones who visit just because they want to not because they heard you had bad news. They just want to spend time with you. The ones that don't just show up for the surgeries and the bad times. the ones that are there for both the bad and good times. The ones that let you cry on there shoulder when you need to the ones that laugh at you because you are laughing at yourself. You find that not all the flesh and blood family is as important because they can't do both, they can't be there for good and bad, they can't come and see you at worse and know how to handle it. You find that friends come from strange places, those that you thought would be there for you are not and the unexpected ones that are. Your co workers that take you in and treat you normally and can make you laugh, and know that not being able to walk right or talk right is frustrating but can make you laugh about it. So I want to thank all my family for the support. I think by now you know that I don't consider all my family to be flesh and blood. that my family is made of friends,co workers and those who share my DNA. I thank those who ask how I am out of concern but also know that cancer does not define me and there is more to me. I feel bad for those who can not see me past the illness. Because I am still here and still a bitch some of the time,but also I will still do anything for my true family that is in my power while I am sick and they know they can ask,because I am not defined by my illness. Cancer does not own me,not until I take my last breath and I know who will be there for me. OK My Mom just read my blog and had a very good analogy for my life. You don't visit cancer you live it. Thank you to all who live it and the REST of my life with me.

update

OK I know this sounds messed up. But I felt better before things started shrinking. My headaches are worse. To the point that Shane and Mom have to hold my head to help ease the pressure. I am dizzy all the time now and have chest pain on and off. I also am more tired than I have ever been.My neuropathy is worse.Only good I can say at this point is that I get a second round of gene therapy. I am headed toward a bombardment of chemo because they want to get a better or rather cleaner strain of DNA to make the next treatment hopefully better. That means getting my Leukemia under better control. Good news is I am going to make it to my next birthday  35 here I come. Hopefully I will make it to my next one. 5 months on the time line down so far. So here is to beating the odds. Anybody who ever said God does not give you more than you can handle, I have to say, he can stop anytime now. I think I have reached my quota of pain and what I can handle.

GOOD NEWS

Finally GREAT NEWS. Had a little trip to the ER on Monday due to some chest pain. This resulted in having a scan of my brain being done today instead of at the end of the month. I officially have one tumor that has shrunk 1 inch and is pulling away from the tentacles and a second tumor that shrunk 2 mm. This is the cause  of my chest pain and going in and out of a fib and having the shortness of breath and chest pain. But I will take that in replace of the tumors finally shrinking!!!!! I will get gene therapy again in April. We are at the 2 week mark right now so there is still plenty of time for more good to happen. But it is working!!!!! How excited am i. If I had the energy and the ability I would probably be doing flips in the office. Here is to good news and hopefully more good news to come!!!!!

First Day Back

First day back at work went better than I thought. I felt weak and jello legged from being in bed for so long. head pressure and headaches are a little worse due to being up. I made it through lunch then I threw up my soup and my medicine. as I did not bring extra medicine and my doctor is still on vacation. i opted to go home so I could rest and be ready for the day tomorrow. so we will see what happens in the am.
still getting chemo for the leukemia.The hope is that they can either better control my leukemia or put it into remission so if I am blessed enough to get a second round of gene therapy that it will be a better strand. so big thanks to Auntie Jenny for being my continuous daily driver and thank you Untie Aaron for picking me up today and bringing right up to the door. Will let you all know how the week progresses. At least this time my hair is growing instead of falling out like last time.It is nice when they have to ask you to shave your head for a procedure and not because it is falling out. Ahhh the mysteries of chemo and why some loose hair and some don't.OK took my nightly meds and starting to loose my train of thoughts. Good night, See yah on the flip side with a headache that never goes away HA AH.

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.