Below are the 9 most recent journal entries recorded in jclewley's LiveJournal:

Thursday, January 4th, 2007
12:15 pm	Update Things are good right now. My Dilantin is working well and I have not had any seizures. I consulted with my new Dr. in wtvl and we decided to start Temodar. In fact I took my first round of Temodar in the begining of Dec. I am feeling pretty good. Some times I get a small headache here and there and it seems to be all over the top of my head which is generally an ok thing (very minimal). If it were on the tumor spot then it would be cause for concern, but this is not the case. I have my one month MRI tomorrow the 5th. I suspect that things are sustaining, and with any luck it is shrinking. My wife is in her 6 month of pregnancy and every thing is looking excellent. The babies should be about 2lbs each. They are due on March 28. I think thats pretty much it for now. I hope you are all doing well. -Joe Clewley Current Mood: peaceful Current Music: SRV + B.B King - Matchbox Blues (1 Comment |Comment on this)
Saturday, December 9th, 2006
9:06 pm	Seizure This is going to be a quick one just because im tired. I plan on updating the last post soon. Some stuff have has happened so it its kind of difficult. I had a Grand Mal Seizure last Saturday and it was quite scary. My wife and daughter were there and basically it was like flicking off a light switch. I just remember coming to with my wife brother, father and mother around me and telling me that I had a seizure and the ambulance is on the way, and to not move. I was sore for a few days, but no lasting neurological problems. My Dilantin (anti-seizure meds) level was 2 verses 10-20. That is a huge problem. So I got that fixed and im doing really well now. My family and my self are still shaken up but we are getting by one day at a time. I hope you all are doing good an I will be posting again soon. -Joe Clewley (1 Comment |Comment on this)
Thursday, November 30th, 2006
10:42 am	Mortal Combat So we went to EMMC and talked with my Oncologyst about options. He had chatted with Dana Farber Cancer center (which we visited 2 weeks ago) and they come up with the newest treatment plan available. Here is the drugs and percentages. The drugs are Avastin and CPT-11. They have had 60% success rate for mixed types of cancer (not just mine). Avastin is an agent that trys is shrink tumor cells. CPT-11 is 3 different agents put together for chemo therapy. The problems: Avastin has a 1-2% rate of creating blood clots and or bleeding. This is a very low percentage. The worse part about the drug is that I have to wait 6 weeks after stopping the Avastin inorder to have surgery due to bleeding. This is very bad in my case because I have a tumor in the brain and it is the most agressive type. So if the tumor decides that it wants to grow twice over it can happen in a matter of a week or two. Therefore I am stuck with no options until the 6 weeks are up. In other words 6 weeks can be a death sentence for me. Previously I had surgery and then had radio therapy and chemotharapy using Temodar. The surgery is not a cure there for the tumor with come back. All of the options are also not a cure in fact it is "time buying" meaning that any type of chemo or Avastin is meant to try to supress the cells so that the tumor does not grow. I took Temodar for a year and a half then we stoped it. Everything check out ok until 6 months after the Temodar was stopped. Now the tumor is coming back again. My Oncologyst at EMMC says that the Temodar did not work because the tumor cam back. I disagree. I think it did work because im still here 1 1/2 years later. In most cases like mine the survival rate is 6 moths. The tumor in small at the moment so this is what I think. I think that I should try the Temodar again and see what it does to the tumor while it is in my head. I hope it can supress the tumor for a long time. If it does not supress the tumor then I can go under the knife again (with out the risk of the 6 week wait) and be ok for more time. Then I can try it again with the Temodar with out the tumor and see if it does a better job. Or I can go to the next step with Avastin and CPT-11. I guess it's really up to me but it just seems like using Avistin is putting the cart before the horse. I want to exhaust the Temodar efforts before trying the "best of what they have". In fact Temodar has shown so much success that there are 7 + year survivors and they are still taking Temodar. If anyone has and input or would like to tell me what you think please feel free to post. Thanks all, Joe Clewley (3 Comments |Comment on this)
Thursday, November 23rd, 2006
11:38 am	ThanksGiving Happy ThanksGiving all ! I hope you all have an excellent day. -Joe (Comment on this)
Sunday, November 12th, 2006
2:13 am	So Thursday at around 1:30 I was watching T.V when all of a sudden it was like some was right next to me and they were taking fairly loud and repeating a single word over and over. I looked around to see if a radio was on but nothing but the T.V. was on and I already muted it. Then a minute later the right side on my neck started to twitch and I tried like hell to stop it but I wouldnt. So for lack of how to stop it I ran out side where it was quite and in about 3 miutes I finally stopped it. Then 45 minutes later it started again and i went outside and finally got control of the twitch. After that I thought I should take a nap and maybe this problem will subside. So I had a small nap and when I woke you I had a size able headache. 5 minutes after getting up the twitch started again and the echoing in my hear started again. But this time my right hand and arm, up to my elbow turned completly numb. That went away inn 5 munutes. I knew something was really wrong. I called my wife and brother because were the close and told them. I called my Oncologist's nurse and she said ti so to the ER NOW or call 911. Luckly my brother was there when I called to confirm to her that someone was there. By the time I called my brother and wife my comprehension had gone down hill. I was having a hard time talking full sentinces. I was fully aware of what was going on but could not speak very well. Wen to the ER and they pulled my file. It took 5 hours to start the transport from DELTA to Bangor's EMMC. I must say that the EMS people and the Dr. riding with me were very nice and we chatted the whole way ... Even with a bad head ache on my left size on my head and anti seizure medicine in an IV drip. I finally get to bangor and they cart me to the fifth floor. They put me in a private room (across the hall from the room I was in after surgery). They gave me Vicidin+Tylenol to stop the headached and help me sleep and the next morning I was scheduled for a CT scan. After the CT the c came in and told me that the tumor is not growing (thank god.. literally) but there is a little but of adema around the tumor. This was causing irratiation to the brain. In turn I was having mild seizure's and headaches. They put the on another drip for the anitseizure and when that was gone (about 4:00pm) they drew more blood and said I was good to go. They gave me the antiseizure, stereroids, and prilosec (to combat the steroroids eating at the stomach) all pill form. I feel pretty good night now and I think this stuff will work until surgery. These drugs are the same ones they gave me the first time around. so all in all im doing good . I look like a pincoushin and some time I say things a little backwords as I do talking. Some times I have a little problem with finding the word im trying to find in conversation. Some people dont notice and do. I suspect it will correct itself but im not to worried about it. Im alive and in my book thats a good. Best wishes to you and your associated family and friends, -Joe Clewley Current Mood: thankful Current Music: Animal Planet (2 Comments |Comment on this)
Saturday, October 28th, 2006
9:51 am	All over again... Well I went to have an MRI on Thursday. I looked over the images and thay dont look very good. The tumor has grown back in the same exact spot and is about half the size of the first one. DAMN DAMN DAMN !!! any way I think you can see that im a little pissed about it but I guess it is what it is. So I suspect that I will have to go through sergery all over again. On a better note, I am getting married today. Civil that is. So just emidate family . This will be cool . I am happy and so is she and everything is falling into place. We went to portland on Friday to get a 3 hour ultrasound. The babies look excllent and we finally found out what the sexes are. We have are having one boy and one girl. I am so excited . I really wanted at least one boy. Anyway I hope you all are doing well. Take care. (2 Comments |Comment on this)
Saturday, July 29th, 2006
12:20 pm	X2 I haven't blogged for quite some time now so I figured I probably should. I am done with my chemo therapy (2 months ago) and I am feeling great. My last MRI (2 weeks ago) was perfect. I suspect there will be an issue at all for years to come. Now onto the real news. If you don't already know I got engaged in Feb. And the latest news came on Monday this week. I am going to be a daddy again. This is great news. Although, I am not necessarily in a financial position for this new comer. So I have to get a good job. My disability has made the difference for my family over the past year, and I am greatful. If you are wondering why the subject on this blog says "X2" well here is the reason. We aren't expecting one baby. We are expecting 2. Yes that's right 2... TWO. Yeah..... that was my reaction. This is absolutely amazing. So if anyone has some extra cash .. Feel free to sent it to us. :D you can even use Western Union and you might win $1 Million ..(I'm joking obviously). Anyway, I hope you all are doing very well. Stay Healthy ! Current Mood: excited Current Music: Water flowing in my fishtank (2 Comments |Comment on this)
Thursday, May 26th, 2005
8:25 pm	Congrats... I just wanted to say congratulations to danette and drogers. Also wanted to let you all know that my Radiation was completed last monday the 23th. This is the only time in my life that I will ever have the chance to have radiation treatment. In a way its kindof crappy because that option will never again be available to me, but honestly I wont miss it AT ALL. Current Mood: grateful Current Music: T.V in the background (1 Comment |Comment on this)
Wednesday, April 20th, 2005
10:22 pm	Dont worry he happy ! During the last week for February I had 4 migraine headaches back to back during the middle of the night. On the last night of the migraines I could not get the headache to go away and it resulted in vomiting for 5 1/2 hours. The headaches were behind my left eye and to the left side of my head where your temple is. I also had a ton of pressure on the back of my head. The next day (March 2nd) I went to the doctors to get checked out. I suspected that it was all due to sinus problems/infection. The doc gave me a 6 day supply (strong stuff) of Zithromax to kill off any infection. After using the Zithromax for six days I didn't feel any affect. One day later my left eye started to have double vision. So again I went back to the doc and told him what was happening. He didn't check me out at all. He got me directly into the Eye Dr's to go through a series of tests (the eye visit was merely part of the insurance process i.e. MECare). Then my Dr. put me in for a CT Scan the very next day in the morning. When the CT was done they told me that I needed to got directly to my Dr's office and that is all that was said. My mother was with me for the CT visit and drive me back to the Dr.s office. My doctor was not even supposed to be in his office that day and no one else was there. Then he told me and my mother that the problem was not a sinus infection. He said it was a Brain Tumor. For a split second I thought he was joking... Then I thought "He is a doctor.. He cant joke about shit like that." Reality hits... No sooner than he told me the news he then says " I have an excellent surgeon in bangor. I have already called him and the rest of the hospital to setup an MRI, and need to go straight to Bangor. Of course he talked with my a little before we left. Now in Bangor I go to the MRI machine and then they sent me straight to Dr. Whitman (surgeon). He tell me that it is a size-able Tumor and that it is operable. He said Wednesday we go into surgery. He put me on steroids to reduce the swelling for the meantime. SURGERY DAY. I had to wait 5 days (fri - wed) for surgery day and it was the worse 5 days of my life. When I got all the machines hooked up and the IV's in, I finally found peace within my self knowing that this was a very serious operation and that something may go wrong. Finally that brought my into the operating room and switched me onto the thick black table. I talked to a woman for a minute and then looked up at the ceiling. I looked directly up at the big oblong shaped lights. The next thing I remember is opening my eyes and a nurse putting an oxygen mask on my face. Then about 30 seconds later the surgeon came up to me and said " Were all done. Everything went well.", and I said "Thank You". They carted me up to the ICU for the night. I didn't sleep at all that night and my left wrist/arm was aching all night from the 2 IV's. My right arm only had one IV. I also had a catheter in unmentionable places (this was very unpleasant and was basically waiting all night long for them to take it out the next morning.) I ate a pancake the next morning and then went back to have an MRI. From there they switched me to a private room and pretty much left me alone. On Saturday I was discharged at 7:00am and at 7:30 we went to get breakfast at the Coach House in Bangor. Now all we had to do is wait for the Biopsy report. Well he got the report and it was worse than we expected. The Tumor is a type that is very very rare. The whole Tumor was Benign except for some cells that developed in the middle of it. Hopefully the cells did not spread anywhere out side the brain. So now the course of action is Radiation treatment and Chemo Tharapy. I have 6 weeks of Radiation (5 days a week) and I have to take Chemo 5 days a week orally (which is nice) then 5 days out of every month for a year. I'm almost through week 3 already for radiation. So the saga continues. I just want to say thank you to everyone that supported my family and I. Thank you all for your prayers. I hope that no one ever has to go through anything like this. Be healthy and do whatever your heart desires because shit happens and one day you might not have the chance. I will post updates. Thanks again. Current Mood: grateful Current Music: silence (2 Comments |Comment on this)