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!!!!!