It has come to my attention that this person named above has copied the posts on my blog space without my permission. I cannot find any information about him or her. Much like the spam we are forced to put up with, or the junk mail that fills our mailbox at the house, if I cannot find anything about this person they get away with their deceptive practice.
Again,who is Alfrida Parnell?
It bothers me she has copied many of my postings from here w/out permission. The purpose of this blog is not to complain about web practices and problems... So I will quit on this topic for now.
Somebody has to know who this person is, and if so please e-mail me a solution. I suspect this person doesn't exist actually, and that this is a false name. Even so my cell phone found so many duplicate postings from my writings and ramblings on this blog that it is clear the name Alfrida Parnell has been in use for a while. I challenge this person to contact me and/or make reference to this particular post on my blog. Whoever you are, if you want my content let me know – don't just steal it.
-Paul Brustas
Thursday, October 20, 2011
Wednesday, October 19, 2011
october 19, 2011
It is now mid October and things are still going quite well. I wish I could say that I was completely symptom – free but that is not the case. While I am still able to walk, using the cane, there are a couple of annoying new things that concern me: most times it is hard for me to read because I cannot focus well.
My left leg extends at an unusual angle now, so I must be very careful how I walk. I walk slower now than ever and that's very unsettling. I am thankful however, to still be getting around as well as I do though, and I can see very easily how much family support means to somebody in my position. Lorraine spends at least 90 minutes every single day preparing medicines for me. In addition, we go to the lab three times per week for blood tests, as a monitor my electrolyte levels very closely. Very thankfully, the San Diego weather this time of year is wonderfully pleasant. What, you may ask, does this have to do with me healing?
Remember that we originally signed up for this clinical trial medicine at the Burzynski clinic in Houston. This was done in mid summer. Lorraine and I traveled cross-country to do this, during the worst season possible to visit Houston Texas.
Not only was it too hot to be comfortable even in any air-conditioned car or apartment, but the humidity was so high that my asthmatic lungs could not breathe well. For all these reasons the trip to Houston was horrible for me. I am glad to report that it was worth it... As I have written in other blog posts, the MRI testing of my brain after going through 90 days of treatment or so showed very positive results. Next week, I go in for another MRI and we are praying for similar results, though to be honest, the new symptoms I have are scaring me-as much as I want to keep my head up high. Actually I do keep my head up high, as most days I feel very good! People I meet are always surprised to find that I have stage IV brain cancer. This type of disease has a reputation of scaring people! They expect me to have bloody sores all over my body or something.
Thank God that my family keeps me comfortable physically, and that we are able to pay for the clinical trial that I am involved with. I have no way of telling how I would be feeling without either one of those – but I know it would never be as good as I feel right now. Also, I think everybody reading this blog that is praying for me... I definitely believe in the power of prayer! Jesus Christ is my Lord and Savior, and it is only through Him that I am in was to achieve any healing at all. All prayers in my name are thankfully appreciated!
I do not care in what language you pray or think of me, just that you do both in my name.
My left leg extends at an unusual angle now, so I must be very careful how I walk. I walk slower now than ever and that's very unsettling. I am thankful however, to still be getting around as well as I do though, and I can see very easily how much family support means to somebody in my position. Lorraine spends at least 90 minutes every single day preparing medicines for me. In addition, we go to the lab three times per week for blood tests, as a monitor my electrolyte levels very closely. Very thankfully, the San Diego weather this time of year is wonderfully pleasant. What, you may ask, does this have to do with me healing?
Remember that we originally signed up for this clinical trial medicine at the Burzynski clinic in Houston. This was done in mid summer. Lorraine and I traveled cross-country to do this, during the worst season possible to visit Houston Texas.
Not only was it too hot to be comfortable even in any air-conditioned car or apartment, but the humidity was so high that my asthmatic lungs could not breathe well. For all these reasons the trip to Houston was horrible for me. I am glad to report that it was worth it... As I have written in other blog posts, the MRI testing of my brain after going through 90 days of treatment or so showed very positive results. Next week, I go in for another MRI and we are praying for similar results, though to be honest, the new symptoms I have are scaring me-as much as I want to keep my head up high. Actually I do keep my head up high, as most days I feel very good! People I meet are always surprised to find that I have stage IV brain cancer. This type of disease has a reputation of scaring people! They expect me to have bloody sores all over my body or something.
Thank God that my family keeps me comfortable physically, and that we are able to pay for the clinical trial that I am involved with. I have no way of telling how I would be feeling without either one of those – but I know it would never be as good as I feel right now. Also, I think everybody reading this blog that is praying for me... I definitely believe in the power of prayer! Jesus Christ is my Lord and Savior, and it is only through Him that I am in was to achieve any healing at all. All prayers in my name are thankfully appreciated!
I do not care in what language you pray or think of me, just that you do both in my name.
Friday, September 23, 2011
Hard to believe it is almost October.
I have been sick with this tumor since the beginning of this year, and like most folks, I have never been ill for such a long time. Seems like every week I get a new sensation of something not working right, yet the bottom line is that my tumor is shrinking and I am extremely thankful for that!
A couple weeks ago, we had the first MRIs done since I was put on Brezinski's trial medicine. Out of three glioblastoma growths conspiring to kill me , two of them have noticeably shrunk by quite a margin.!! The third tumor unfortunately, is still sizable and may be growing but we will not know for another six weeks when we get the next set of pictures taken. This past few weeks have been all about oddball hospital visits. The Hickman catheter that was in my chest came out by me stepping on the cord. This landed me in the emergency room very quickly. Because there was no surgeon available immediately to replace that port, I was forced to settle for a tube sticking out of my right arm which needs constant maintenance and is completely unacceptable for the constant inflow of medicine my body requires.
This type of thing, I believe, is designed for people with much shorter term needs such as if you get the flu. In such a case, they would use it for a week or so but not permanently.
I also landed in emergency because of being short of breath and having rapid heart rate. They wanted to scan my chest for more blood clots. They did not find any, thank God.
Overall very thankfully, I am feeling fine– especially when compared with those folks who are enduring "conventional" cancer treatment which is comprised of chemotherapy and radiation... Which I refuse to do. I have already lived longer than the expectancy of those who submit to those barbaric treatments. It is a shame – much more than a shame that the government only allows those two treatments for FDA approval.
Clinical trials such as the one I am on have proven there other ways to treat cancer. Meanwhile in all these years, cancer has become so common that it is now considered to be a great moneymaker. It should be remembered that cancer is a killer! The FDA treats cancer is big business and caters to it as such. Meanwhile, thousands of people die. The truth is that the two "treatments" that the FDA has approved for cancer kill people too and yet, the government hides that. Radiation and chemo are horrible combination and the end result is worse than the disease they are designed to treat.
Of course I hope the Brezinski clinic's trial medicine works for me . Just as important as that however, is that the public be educated that there are more ways to treat cancer then your doctor would have you believe . All your doctor can provide for you legally, is the two very barbaric methods of treatment spoken of above . Without congressional approval they cannot recommend any treatment for cancer other than radiation or chemotherapy. How is that for fixed system?
If any other business fixed the results like that, they'll be forced to close and people would be in jail. But the FDA however is a federal agency so they are allowed to fix the results! Rather than continue along the same yarn here, turning this into a political discussion, let me just say that if you don't believe me do your own research. A five-minute search on the Internet will prove to you the statements I made above are correct and not exaggerated.
There are plenty of choices for cancer treatment besides what the FDA says works. Some of them are targeted for specific cancers such as breast cancer or in my case brain cancer. But don't be afraid to look around, test the waters and make sure the treatment is appropriate for your disease. I'll be around for a long time making entries in this blog – just enough to educate people as I have tried above and also to keep you informed on my fight with this dreaded disease. My beautiful wife Lorraine keeps me positive and driven. I am driven not only to succeed in the battle with the glioblastoma in my brain, but to make sure as many people as possible know that their doctor should not be the only one they trust if cancer joins your family as it did mine. Truth be known, the doctor is the last person to trust for treatment advice since the only allowed treatments offer just a 3 to 5% cure rate.
Would you invest your money for the stockbroker with that kind of track record? Would you use a real estate agent with that kind of track record to sell your house? I wouldn't- and never would. This blog will always be proof of that.
Paul
I have been sick with this tumor since the beginning of this year, and like most folks, I have never been ill for such a long time. Seems like every week I get a new sensation of something not working right, yet the bottom line is that my tumor is shrinking and I am extremely thankful for that!
A couple weeks ago, we had the first MRIs done since I was put on Brezinski's trial medicine. Out of three glioblastoma growths conspiring to kill me , two of them have noticeably shrunk by quite a margin.!! The third tumor unfortunately, is still sizable and may be growing but we will not know for another six weeks when we get the next set of pictures taken. This past few weeks have been all about oddball hospital visits. The Hickman catheter that was in my chest came out by me stepping on the cord. This landed me in the emergency room very quickly. Because there was no surgeon available immediately to replace that port, I was forced to settle for a tube sticking out of my right arm which needs constant maintenance and is completely unacceptable for the constant inflow of medicine my body requires.
This type of thing, I believe, is designed for people with much shorter term needs such as if you get the flu. In such a case, they would use it for a week or so but not permanently.
I also landed in emergency because of being short of breath and having rapid heart rate. They wanted to scan my chest for more blood clots. They did not find any, thank God.
Overall very thankfully, I am feeling fine– especially when compared with those folks who are enduring "conventional" cancer treatment which is comprised of chemotherapy and radiation... Which I refuse to do. I have already lived longer than the expectancy of those who submit to those barbaric treatments. It is a shame – much more than a shame that the government only allows those two treatments for FDA approval.
Clinical trials such as the one I am on have proven there other ways to treat cancer. Meanwhile in all these years, cancer has become so common that it is now considered to be a great moneymaker. It should be remembered that cancer is a killer! The FDA treats cancer is big business and caters to it as such. Meanwhile, thousands of people die. The truth is that the two "treatments" that the FDA has approved for cancer kill people too and yet, the government hides that. Radiation and chemo are horrible combination and the end result is worse than the disease they are designed to treat.
Of course I hope the Brezinski clinic's trial medicine works for me . Just as important as that however, is that the public be educated that there are more ways to treat cancer then your doctor would have you believe . All your doctor can provide for you legally, is the two very barbaric methods of treatment spoken of above . Without congressional approval they cannot recommend any treatment for cancer other than radiation or chemotherapy. How is that for fixed system?
If any other business fixed the results like that, they'll be forced to close and people would be in jail. But the FDA however is a federal agency so they are allowed to fix the results! Rather than continue along the same yarn here, turning this into a political discussion, let me just say that if you don't believe me do your own research. A five-minute search on the Internet will prove to you the statements I made above are correct and not exaggerated.
There are plenty of choices for cancer treatment besides what the FDA says works. Some of them are targeted for specific cancers such as breast cancer or in my case brain cancer. But don't be afraid to look around, test the waters and make sure the treatment is appropriate for your disease. I'll be around for a long time making entries in this blog – just enough to educate people as I have tried above and also to keep you informed on my fight with this dreaded disease. My beautiful wife Lorraine keeps me positive and driven. I am driven not only to succeed in the battle with the glioblastoma in my brain, but to make sure as many people as possible know that their doctor should not be the only one they trust if cancer joins your family as it did mine. Truth be known, the doctor is the last person to trust for treatment advice since the only allowed treatments offer just a 3 to 5% cure rate.
Would you invest your money for the stockbroker with that kind of track record? Would you use a real estate agent with that kind of track record to sell your house? I wouldn't- and never would. This blog will always be proof of that.
Paul
Monday, August 22, 2011
Late August
August 22:
Lorraine's birthday was on 17th and of course we went out to eat with the family and the local Greek restaurant. Since then, the days seem to be getting long... I am still of course taking the antineoplaston medication as I expect to do for the foreseeable future. There are other issues bothering me right now that seem to have no resolution in sight.
I get daily anxiety attacks which last at least an hour each time. This is such a new thing for me, I'm not even sure if I'm describing it properly. What happens is my back muscles all seem to bunch up. I then start to rock back and forth, side to side in what seems to be an effort to stretch my back muscles. My back never seems to get any relief from this and Lorraine will put a heat pack between my back and the chair which does help for a good hour or more. Walking seems to help, but using a quad cane I walk so slowly that I never can really work my muscles as they are intended. There are times like last night when this hurts while I'm trying to sleep as well. Of course my physician gave me pills for the anxiety but all they do is put me to sleep. I don't know how to resolve this issue yet. If anybody has any suggestions please let me know!
I am getting blood tests every other day now, and the clinic in Texas calls us daily to make sure I am doing okay. Other than the occasional headache, I am usually fine.
Sometimes these headaches are very painful, and when they are bad, they will have Lorraine administer medicine to me for it it sure is nice to have a doctor on call 24 hours a day no matter what. Typically there is not a problem... Tylenol usually works fine when I have a headache. The clinic calls everyday, as I said, to monitor the doses of medicine I receive. Lorraine works with them very closely and nothing is done without their approval.
Interestingly, in a grocery store last week we ran into a couple of folks that we met in the clinic last month in Texas! It was so surprising that they recognized us from the Burzynski clinic. You know how it is when you recognize somebody, but you know that you don't recognize them from the current location? It was kind of weird but nice to see people we met at the clinic still doing well. I am still basically free of new symptoms, and for that Lorraine and I are extremely grateful. I need to sign off right now as it is time for Lorraine to start administering my doses for the day. I will do my best to update this blog tomorrow but I may need to get a different microphone so that when the air conditioner comes on it does not type wrong words. Speech recognition is a great thing when works properly. But if you have to correct every other sentence, it's not worth the time! The program I use is called Dragon naturally speaking. It is touted to be the best but you cannot prove it by me. More later
Monday, August 15, 2011
another beautiful day
Finally settling down in San Diego. The trip to Houston was 6 or 7 weeks long, much longer than any other trip I've taken away from the house. . Thankfully, our neighborhood is okay and there was no problem leaving the house unsupervised. The only casualty was the yard, as I had turned the sprinklers off! The yard now looks like raw land somewhere in the desert that has never been watered!
We're settling into our routines, with the addition of course, of making time for my therapy. Lorraine has to make the bags with the liquid medicine for my pump to infuse into my body. This was all part of the training while we were in Houston.
We visited the clinic every single day of the week- this allowed her training to be my caregiver, and for me to get treated everyday while we were there. It takes Lorraine 45 min. to an hour to prepare the bags of medicine for us to install in the pump. I am tethered to the pump 24/7 by the catheter port that was installed into my chest while in Houston. It sounds scary, but the tiny tube that comes from the port allows direct access for medicine to be installed into my body. Also, when blood draws are needed, they are done through this device so that they do not need to use needles in my arms repeatedly. Lorraine has been taught how to maintain this port and change the dressings, in addition to flushing it with saline solution when needed.
The Antineoplaston therapy is a clear liquid that comes in thick plastic bags... The type of bag that is used for IV treatment. When she has to do to them in order to prepare for use, is make sure there are no air bubbles in the bags of liquid. This requires she tap around the edges of each bag, dissipating the small bubbles. Then she has to attach the tubes that go to the pump and me. There are two bags of medicine installed in the pump, and to do this right takes her quite a bit of time every day. In addition, blood tests are done every other day and we must fax the results to the clinic when we get them. The clinic in Houston calls us every single day to see how I am feeling and if there are any changes to report.
This whole process is rather amazing, and I'm sure that if this was not a government controlled (FDA) clinical trial, the process would be a lot easier. I cannot complain though especially if the antineoplaston treatment works as well on me as it has in others over the past years. I have faith that it will, and I'm very anxious for my recovery!
Just a few hours ago, I was dreaming that I had full recovery/use of my left arm and hand. I know this will happen eventually ; Lorraine and I are already making travel plans. I have promised her we will go anywhere in the world she wants to go when I am able. She has hinted for years about a Greek cruise so I am sure that may come first!
Please keep us in your prayers. We have no idea how long this will take but we do know we have the determination and the fight within us to see it through.
We're settling into our routines, with the addition of course, of making time for my therapy. Lorraine has to make the bags with the liquid medicine for my pump to infuse into my body. This was all part of the training while we were in Houston.
We visited the clinic every single day of the week- this allowed her training to be my caregiver, and for me to get treated everyday while we were there. It takes Lorraine 45 min. to an hour to prepare the bags of medicine for us to install in the pump. I am tethered to the pump 24/7 by the catheter port that was installed into my chest while in Houston. It sounds scary, but the tiny tube that comes from the port allows direct access for medicine to be installed into my body. Also, when blood draws are needed, they are done through this device so that they do not need to use needles in my arms repeatedly. Lorraine has been taught how to maintain this port and change the dressings, in addition to flushing it with saline solution when needed.
The Antineoplaston therapy is a clear liquid that comes in thick plastic bags... The type of bag that is used for IV treatment. When she has to do to them in order to prepare for use, is make sure there are no air bubbles in the bags of liquid. This requires she tap around the edges of each bag, dissipating the small bubbles. Then she has to attach the tubes that go to the pump and me. There are two bags of medicine installed in the pump, and to do this right takes her quite a bit of time every day. In addition, blood tests are done every other day and we must fax the results to the clinic when we get them. The clinic in Houston calls us every single day to see how I am feeling and if there are any changes to report.
This whole process is rather amazing, and I'm sure that if this was not a government controlled (FDA) clinical trial, the process would be a lot easier. I cannot complain though especially if the antineoplaston treatment works as well on me as it has in others over the past years. I have faith that it will, and I'm very anxious for my recovery!
Just a few hours ago, I was dreaming that I had full recovery/use of my left arm and hand. I know this will happen eventually ; Lorraine and I are already making travel plans. I have promised her we will go anywhere in the world she wants to go when I am able. She has hinted for years about a Greek cruise so I am sure that may come first!
Please keep us in your prayers. We have no idea how long this will take but we do know we have the determination and the fight within us to see it through.
Friday, August 12, 2011
back HOME!
We arrived back in San Diego the beginning of this week. Wow! What a relief! The good Lord answered all of our prayers regarding safe travel, and when the plane touched down in San Diego airport we both cried lots of tears of relief! Immediately our environment was close to 40° cooler than Houston and the humidity was well under half what we were experiencing previously. I finally feel like I can put my healing on a fast-track to success. While we were out of town, fighting unbelievable weather conditions I never had that feeling at all. Dorothy was right: "there's no place like home".
Houston was incredibly tough six-week journey that I will never repeat. We are hard at work with our healthcare provider arranging weekly tests that are required by the FDA for me to be in this clinical trial.
While in Houston I have had a catheter port installed in my chest to allow my medicine to be administered... And also to allow blood to be drawn at will by the labs for blood testing. The first surprise we had upon arrival at San Diego was that they were no longer able to draw blood from this port. With it not being used for a few days while we were traveling, it got occluded . This required yet another trip to emergency room. They told us only had to do was use a solution that is very common to get rid of a minor clot that was preventing the blood from flowing out of the catheter. All I can say is this: don't ever believe it when an emergency room says "very quick procedure" or if they use the word "minor" to describe fixing something. If we were still at the clinic in Houston, this would have been a 30 minute procedure but in our local emergency room it took until well after dark. What was required, was injection into the catheter of this product that deletes these small clots.. And then you let it sit for 30 min. before drawing blood. In other words it should take less than an hour, not a full day and part of evening.
On the other hand, I am grateful that Kaiser has worked with us in arranging the constant blood testing that is required by the FDA for this clinical trial. My oncologist has agreed to help me along with whatever is needed to get through this clinical trial at Burzynski clinic. This is a lot of testing- three times per week labs will be drawn. This is why it is so critical in my catheter port be working properly.
If I had to pay out-of-pocket for all this testing locally, it would be a lot different! I would like Kaiser Doctor allowing them to be done within the system, each test will just cost me $10 and I'm very grateful.
It feels so good to be home and sleep in our nice soft bed without a wall air conditioner blowing directly on us and making a lot of noise! We actually had the hotel change our room once because we could not stand the air conditioner in our first room! When it's well over 100° outside, and your room is only about 300 ft., That AC spends a lot of time working hard, but it's too noisy for you to sleep what good is it?
Ahh, the virtues of central air!
Houston was incredibly tough six-week journey that I will never repeat. We are hard at work with our healthcare provider arranging weekly tests that are required by the FDA for me to be in this clinical trial.
While in Houston I have had a catheter port installed in my chest to allow my medicine to be administered... And also to allow blood to be drawn at will by the labs for blood testing. The first surprise we had upon arrival at San Diego was that they were no longer able to draw blood from this port. With it not being used for a few days while we were traveling, it got occluded . This required yet another trip to emergency room. They told us only had to do was use a solution that is very common to get rid of a minor clot that was preventing the blood from flowing out of the catheter. All I can say is this: don't ever believe it when an emergency room says "very quick procedure" or if they use the word "minor" to describe fixing something. If we were still at the clinic in Houston, this would have been a 30 minute procedure but in our local emergency room it took until well after dark. What was required, was injection into the catheter of this product that deletes these small clots.. And then you let it sit for 30 min. before drawing blood. In other words it should take less than an hour, not a full day and part of evening.
On the other hand, I am grateful that Kaiser has worked with us in arranging the constant blood testing that is required by the FDA for this clinical trial. My oncologist has agreed to help me along with whatever is needed to get through this clinical trial at Burzynski clinic. This is a lot of testing- three times per week labs will be drawn. This is why it is so critical in my catheter port be working properly.
If I had to pay out-of-pocket for all this testing locally, it would be a lot different! I would like Kaiser Doctor allowing them to be done within the system, each test will just cost me $10 and I'm very grateful.
It feels so good to be home and sleep in our nice soft bed without a wall air conditioner blowing directly on us and making a lot of noise! We actually had the hotel change our room once because we could not stand the air conditioner in our first room! When it's well over 100° outside, and your room is only about 300 ft., That AC spends a lot of time working hard, but it's too noisy for you to sleep what good is it?
Ahh, the virtues of central air!
Monday, August 1, 2011
AUG off to a rough start ...
August 1, 2011
Another brand-new day! We came home last night after yet another weeklong stay in the hospital. As incredible as it sounds, it was just a matter of hours from being released two weeks ago, until I was admitted again. I had extreme fever, chills, and once again was again put on antibiotics.
This was a Monday night and I was kept on antibiotics all week; released Friday night. This time I have been given antibiotics to take for one more week. I feel fine at this point, though I am worn out from all the hospital time. My left leg which had the clots two weeks ago, is still slightly swollen and I have a real fear that there may be more clots.
All I can do is pray the Coumadin does its job and a filter that they put in my vein to catch clots is working fine. We have tickets to fly home to San Diego in four days. The Burzynski clinic will put me back on treatments today or tomorrow, assess my progress, in release me for flight home. After all of the trials and tribulations this journey to Houston has given us, San Diego is going to be an incredibly welcome sight. We still have a lot of work to do, obviously, as the cancer treatment has just begun . The clinic will send me medicines and supplies to our home address, and hopefully we will not need to return to Houston until fall when the weather should be more cooperative. I firmly believe that humidity and heat have been major players in my slow progress. We're praying that once we return to San Diego, and my body gets used to the good weather again, my progress with the cancer treatments will progress much faster than it’s been possible here in Houston.
If that does not happen then I will be forced to look elsewhere for alternate cancer treatments. This would be a shame, since we have invested so much in the Burzynski clinic. The bottom line however is, that I have been sick most of the time that I've been in Houston and that there have actually been only I think two weeks of continual treatment using antineoplaston therapy that I came here to receive. I have had a few days on the therapy in between hospital stays and such, but for continual treatment I think two weeks is about all I have had at one time. The Burzynski clinic and its doctors have been nothing short of professional and we have enjoyed working with them every step of the way. I don't know why this has been such a rough ride for me… And I really do not think that therapy from the clinic is to blame. On the other hand, how could the humidity of a Houston summer put me in the hospital over and over again? There are tons of unanswered questions, but the bottom line is that we are flying home in a few days. The hospital gave me clearance to fly and I am going to take advantage of it. I do know that by the time I reach San Diego, my wings will be very tired of flying. But, this is a risk I am willing to take!
Another brand-new day! We came home last night after yet another weeklong stay in the hospital. As incredible as it sounds, it was just a matter of hours from being released two weeks ago, until I was admitted again. I had extreme fever, chills, and once again was again put on antibiotics.
This was a Monday night and I was kept on antibiotics all week; released Friday night. This time I have been given antibiotics to take for one more week. I feel fine at this point, though I am worn out from all the hospital time. My left leg which had the clots two weeks ago, is still slightly swollen and I have a real fear that there may be more clots.
All I can do is pray the Coumadin does its job and a filter that they put in my vein to catch clots is working fine. We have tickets to fly home to San Diego in four days. The Burzynski clinic will put me back on treatments today or tomorrow, assess my progress, in release me for flight home. After all of the trials and tribulations this journey to Houston has given us, San Diego is going to be an incredibly welcome sight. We still have a lot of work to do, obviously, as the cancer treatment has just begun . The clinic will send me medicines and supplies to our home address, and hopefully we will not need to return to Houston until fall when the weather should be more cooperative. I firmly believe that humidity and heat have been major players in my slow progress. We're praying that once we return to San Diego, and my body gets used to the good weather again, my progress with the cancer treatments will progress much faster than it’s been possible here in Houston.
If that does not happen then I will be forced to look elsewhere for alternate cancer treatments. This would be a shame, since we have invested so much in the Burzynski clinic. The bottom line however is, that I have been sick most of the time that I've been in Houston and that there have actually been only I think two weeks of continual treatment using antineoplaston therapy that I came here to receive. I have had a few days on the therapy in between hospital stays and such, but for continual treatment I think two weeks is about all I have had at one time. The Burzynski clinic and its doctors have been nothing short of professional and we have enjoyed working with them every step of the way. I don't know why this has been such a rough ride for me… And I really do not think that therapy from the clinic is to blame. On the other hand, how could the humidity of a Houston summer put me in the hospital over and over again? There are tons of unanswered questions, but the bottom line is that we are flying home in a few days. The hospital gave me clearance to fly and I am going to take advantage of it. I do know that by the time I reach San Diego, my wings will be very tired of flying. But, this is a risk I am willing to take!
Saturday, July 23, 2011
extended hospital stay
Monday the 18th I wound up in the hospital one more time. I had uncontrollable chills for an hour after we ate dinner, followed by temperatures of 102.9 The skin on my already swollen leg had a mottled appearance, which Lorraine said had some special significance. That was her deciding factor to bring me into the emergency room.
I have been on antibiotics/IV medicines ever since. It seems they have things under control now, but they still have me on blood thinners because of swelling. On one hand, antibiotics have helped with my condition, yet now they say I never did have an infection since they can't grow culture either from blood or urine. My question is: if there was no infection, then why did antibiotics get rid of my symptoms all week? When I was in the emergency room I had uncontrollable shiver, extremely low blood pressure, and the temperature was103.Now my temperature is normal and all of those other symptoms are gone thankfully. I may get out of the hospital this weekend if my Coumadin levels can be adjusted properly so my brain tumor does not bleed.
Every day we are in the hospital is in other day I am not getting the cancer treatment I need. I try very hard to not get excited or worry about this, but the bottom line is that due to factors out of my control, I think that I have only received the antineoplaston treatment we came here to get for less than two weeks. We have been here for five weeks suffering the Houston summer – and one thing after another has caused interruptions in the treatment from the Burzynski clinic. Even when healthy, a couple of days in emergency can really set you back. My system is not healthy, and even the extreme Houston heat sets me back when I am exposed to too much of it. When I had medical problems before, I was only in the hospital for a couple days. It has now been a week and I have no idea how long it will take me to get back on track.
While here, they had treated me for blood clots in my swollen leg and my chest. I have a stent installed to clean up and collect any clots that come loose from my legs. I am now on blood thinners and other drugs specifically designed to break up clots.
What the doctor is trying to do is bring my Coumadin levels in my blood to 2.5 which is the right number for one that has this type of brain tumor. This assures the blood is thin enough to not clot, yet thick enough to coagulate when needed. When I got here the level was 1.1 and they have increasing the dose of the medicine every other day since then, still trying to achieve 2.5
As of this morning my level is only 1.6 so the Dr. told me I will be here at least through the weekend and that is certainly not the news I wanted to hear!
I have been on antibiotics/IV medicines ever since. It seems they have things under control now, but they still have me on blood thinners because of swelling. On one hand, antibiotics have helped with my condition, yet now they say I never did have an infection since they can't grow culture either from blood or urine. My question is: if there was no infection, then why did antibiotics get rid of my symptoms all week? When I was in the emergency room I had uncontrollable shiver, extremely low blood pressure, and the temperature was103.Now my temperature is normal and all of those other symptoms are gone thankfully. I may get out of the hospital this weekend if my Coumadin levels can be adjusted properly so my brain tumor does not bleed.
Every day we are in the hospital is in other day I am not getting the cancer treatment I need. I try very hard to not get excited or worry about this, but the bottom line is that due to factors out of my control, I think that I have only received the antineoplaston treatment we came here to get for less than two weeks. We have been here for five weeks suffering the Houston summer – and one thing after another has caused interruptions in the treatment from the Burzynski clinic. Even when healthy, a couple of days in emergency can really set you back. My system is not healthy, and even the extreme Houston heat sets me back when I am exposed to too much of it. When I had medical problems before, I was only in the hospital for a couple days. It has now been a week and I have no idea how long it will take me to get back on track.
While here, they had treated me for blood clots in my swollen leg and my chest. I have a stent installed to clean up and collect any clots that come loose from my legs. I am now on blood thinners and other drugs specifically designed to break up clots.
What the doctor is trying to do is bring my Coumadin levels in my blood to 2.5 which is the right number for one that has this type of brain tumor. This assures the blood is thin enough to not clot, yet thick enough to coagulate when needed. When I got here the level was 1.1 and they have increasing the dose of the medicine every other day since then, still trying to achieve 2.5
As of this morning my level is only 1.6 so the Dr. told me I will be here at least through the weekend and that is certainly not the news I wanted to hear!
Sunday, July 17, 2011
Another week gone by. And it was a tough one!
This week started with us paying attention to a problem that started last week-which was swelling in my left leg and foot. When we asked the doctors about this, and they looked at it, they recommended I go to Houston medical imaging for a Doppler scan of my leg. Anticipating a minor problem, of course we complied. The minute they were through imaging my left leg however, the lady disappeared and called the clinic to talk to the doctor immediately.
They also performed a similar scan on my chest, with similar results unfortunately. I had a blood clot in my left leg from thigh to the foot, and a couple in my chest as well. Needless to say, I was sent to Emergency right away. By 7:30 the next morning, I was sporting a new device; a filter was installed in my veins to collect these clots. I still don't know how I'm going to get through airport security with a metal stent inside me ... Or what will happen next time I need an MRI. So these are the least of our worries right now, I am recovering from a couple of days flat on my back in the hospital which is never fun. It always takes me a week to get over it!!
Right now swelling in my left foot and leg has gotten much better, though I still have problems breathing which the doctor says is because there is still an active clot or two in my chest. I am now on blood thinners and also another drug which is designed specifically to break up blood clots. I have been told that as these blood clots in my chest break up, I will feel it and my breathing will eventually get better. I can't wait for that to happen! It is no fun being short of breath at any time, but Houston summer weather is so demanding that it's very hard for me to breathe any time I'm away from home or not in the car.
We were scheduled to leave Houston this past Friday, the 15th. The Burzynski clinic has already released us; they are satisfied Lorraine knows what she needs to know about administering the clinical trial medicines and the operation of the pump. At the time they decided to release us, I had been on the clinical trial medicine for a while without trouble.
Then all of a sudden we had these problems with blood clots and a few days in the hospital. Obviously we were not able to fly home to San Diego with me in the emergency room! It is Sunday evening now, the 17th, and we just made reservations to fly home next Friday. That gives me five days to completely recover and allow the doctors to settle on the exact dosages of the new medicines that I am taking since the hospital stay.
As anxious as we are to return home to San Diego, we cannot do so until the final release from Dr. Burzynski. We made the reservations in anticipation of this, since we were already released last week before the hospital stay. All we can do now is hope and pray that my recovery from these blood clots continues well and without any more trouble. If there are more issues, the clinic may not release me to go home for a few more days. This is a possibility however we do not believe it probable. We have every hope and belief that we will be allowed to fly home this coming week and resume the antineoplaston treatments from our own house.
Today we had to drive all the way to Bush airport on the far side of Houston to clear up the rental car contract. It has already been 30 days since we rented the car, and that is the maximum Avis allows! We had no choice but to drive to the airport, terminate the original contract, and re-rent the same car for another week. I cannot believe we have been in this hot city for four weeks-- needless to say, the idea of flying home to San Diego sounds staggeringly appealing. Lorraine and I both have had enough of the Houston summer weather and in my case, my lungs need to get away from the humidity as soon as possible.
Please keep us in your thoughts this week as we will be very busy. We have boxes to package and ship home that we cannot bring on the plane with us. We have one more week of visiting the clinic every single day for four hours. We have one more week with me being tethered to the antineoplaston pump everywhere I go and struggling to breathe the Houston air while I get around.
Our spirits are high though, thanks to Lorraine with her New York fortitude and the strength of being Italian. She keeps me going and in most cases cheerful. Some days I just need to grit it out best I can. At the end of the day however, we always have found a way to make it. We thank God every day for this opportunity to heal my brain tumor and eliminate cancer from me completely.
We have no idea how long this process will take, but we certainly know it is worth waiting for.
They also performed a similar scan on my chest, with similar results unfortunately. I had a blood clot in my left leg from thigh to the foot, and a couple in my chest as well. Needless to say, I was sent to Emergency right away. By 7:30 the next morning, I was sporting a new device; a filter was installed in my veins to collect these clots. I still don't know how I'm going to get through airport security with a metal stent inside me ... Or what will happen next time I need an MRI. So these are the least of our worries right now, I am recovering from a couple of days flat on my back in the hospital which is never fun. It always takes me a week to get over it!!
Right now swelling in my left foot and leg has gotten much better, though I still have problems breathing which the doctor says is because there is still an active clot or two in my chest. I am now on blood thinners and also another drug which is designed specifically to break up blood clots. I have been told that as these blood clots in my chest break up, I will feel it and my breathing will eventually get better. I can't wait for that to happen! It is no fun being short of breath at any time, but Houston summer weather is so demanding that it's very hard for me to breathe any time I'm away from home or not in the car.
We were scheduled to leave Houston this past Friday, the 15th. The Burzynski clinic has already released us; they are satisfied Lorraine knows what she needs to know about administering the clinical trial medicines and the operation of the pump. At the time they decided to release us, I had been on the clinical trial medicine for a while without trouble.
Then all of a sudden we had these problems with blood clots and a few days in the hospital. Obviously we were not able to fly home to San Diego with me in the emergency room! It is Sunday evening now, the 17th, and we just made reservations to fly home next Friday. That gives me five days to completely recover and allow the doctors to settle on the exact dosages of the new medicines that I am taking since the hospital stay.
As anxious as we are to return home to San Diego, we cannot do so until the final release from Dr. Burzynski. We made the reservations in anticipation of this, since we were already released last week before the hospital stay. All we can do now is hope and pray that my recovery from these blood clots continues well and without any more trouble. If there are more issues, the clinic may not release me to go home for a few more days. This is a possibility however we do not believe it probable. We have every hope and belief that we will be allowed to fly home this coming week and resume the antineoplaston treatments from our own house.
Today we had to drive all the way to Bush airport on the far side of Houston to clear up the rental car contract. It has already been 30 days since we rented the car, and that is the maximum Avis allows! We had no choice but to drive to the airport, terminate the original contract, and re-rent the same car for another week. I cannot believe we have been in this hot city for four weeks-- needless to say, the idea of flying home to San Diego sounds staggeringly appealing. Lorraine and I both have had enough of the Houston summer weather and in my case, my lungs need to get away from the humidity as soon as possible.
Please keep us in your thoughts this week as we will be very busy. We have boxes to package and ship home that we cannot bring on the plane with us. We have one more week of visiting the clinic every single day for four hours. We have one more week with me being tethered to the antineoplaston pump everywhere I go and struggling to breathe the Houston air while I get around.
Our spirits are high though, thanks to Lorraine with her New York fortitude and the strength of being Italian. She keeps me going and in most cases cheerful. Some days I just need to grit it out best I can. At the end of the day however, we always have found a way to make it. We thank God every day for this opportunity to heal my brain tumor and eliminate cancer from me completely.
We have no idea how long this process will take, but we certainly know it is worth waiting for.
Saturday, July 9, 2011
LIGHT at the end of the tunnel
Sat, July 9, 2011
Well, the Houston weather sure has been persistent. Very rarely have we seen temperatures under 95° and when that has happened it didn't last long! As anybody that's ever been in this part of the country can tell you, the humidity is the real story, not just the temperature. I really don't know how or why somebody would choose to live and stay in this climate, especially if ever exposed to nicer weather. As I've said repeatedly in other posts on this blog, the people in Houston really are an awesome bunch though, and they really take a lot of the sting away from the weather.
We are still visiting the Burzynski clinic every morning, though they have stepped it up to an earlier time slot which makes it a bit tougher for me get there on time. Neither of us favor early mornings any time, and right now the additional challenges of starting my day slow things down considerably! Not to mention that Lorraine has to put me in a wheelchair, push me around, and pour me into our rental car before we even drive one block from the hotel. Thankfully, the people at the clinic don't press for time - they are very patient with us.
I am getting used to the high water intake required for the antineoplaston treatment. My left leg however is retaining fluid and is swelling dramatically. This is my first actual problem with treatment since it started. My left leg is so swollen that we expect the Dr. today to want an ultrasound to find out if there is a clot or similar problem causing the swelling.
Yesterday afternoon was exciting in that one of the couples "graduated" and went home. I do not know how long they were here but I guarantee you they were relieved to be able to go home. The gentleman's name is Ed and his symptoms almost completely mirror mine. His wife received the exact same training in equipment and procedures that Lorraine is currently going through... And we wish them nothing but the very best on the rest of their healing journey. If their departure surprises you, remember that we don't stay here in Houston town until I am cancer free, either. We stay only until Lorraine is proficient in every aspect of administering the doses and operating the pump. What is required of myself is that I get beyond issues like that swollen leg and water retention. The doctors need to make sure they've achieved the proper and maximum dose of antineoplaston therapy. This requires that my system be stabilized without issues for whatever period of time they deem necessary. In other words, even if Lorraine was completely and totally trained at this point in time, we would still not be free to go as I am not stabilized yet.
Make no mistake this is a comprehensive program run by professionals that care deeply for our success. They have taken us by the hand and will remain by our side until long after we leave Houston. Yesterday afternoon was exciting in that one of the couples "graduated" and went home. We are very anxious to return to San Diego, but we're literally being taken through every step that is required while we're here in Houston. So there's no rush to leave Houston as long as they are taking such good care of us! If we stick around long enough, maybe the weather will cool off!
That's enough for now, more updates coming later… And I will try to make them more than once a week!
Well, the Houston weather sure has been persistent. Very rarely have we seen temperatures under 95° and when that has happened it didn't last long! As anybody that's ever been in this part of the country can tell you, the humidity is the real story, not just the temperature. I really don't know how or why somebody would choose to live and stay in this climate, especially if ever exposed to nicer weather. As I've said repeatedly in other posts on this blog, the people in Houston really are an awesome bunch though, and they really take a lot of the sting away from the weather.
We are still visiting the Burzynski clinic every morning, though they have stepped it up to an earlier time slot which makes it a bit tougher for me get there on time. Neither of us favor early mornings any time, and right now the additional challenges of starting my day slow things down considerably! Not to mention that Lorraine has to put me in a wheelchair, push me around, and pour me into our rental car before we even drive one block from the hotel. Thankfully, the people at the clinic don't press for time - they are very patient with us.
I am getting used to the high water intake required for the antineoplaston treatment. My left leg however is retaining fluid and is swelling dramatically. This is my first actual problem with treatment since it started. My left leg is so swollen that we expect the Dr. today to want an ultrasound to find out if there is a clot or similar problem causing the swelling.
Yesterday afternoon was exciting in that one of the couples "graduated" and went home. I do not know how long they were here but I guarantee you they were relieved to be able to go home. The gentleman's name is Ed and his symptoms almost completely mirror mine. His wife received the exact same training in equipment and procedures that Lorraine is currently going through... And we wish them nothing but the very best on the rest of their healing journey. If their departure surprises you, remember that we don't stay here in Houston town until I am cancer free, either. We stay only until Lorraine is proficient in every aspect of administering the doses and operating the pump. What is required of myself is that I get beyond issues like that swollen leg and water retention. The doctors need to make sure they've achieved the proper and maximum dose of antineoplaston therapy. This requires that my system be stabilized without issues for whatever period of time they deem necessary. In other words, even if Lorraine was completely and totally trained at this point in time, we would still not be free to go as I am not stabilized yet.
Make no mistake this is a comprehensive program run by professionals that care deeply for our success. They have taken us by the hand and will remain by our side until long after we leave Houston. Yesterday afternoon was exciting in that one of the couples "graduated" and went home. We are very anxious to return to San Diego, but we're literally being taken through every step that is required while we're here in Houston. So there's no rush to leave Houston as long as they are taking such good care of us! If we stick around long enough, maybe the weather will cool off!
That's enough for now, more updates coming later… And I will try to make them more than once a week!
Sunday, July 3, 2011
Day three
It is very are to believe, but at just three days of treatment I am already seeing some improvement!! So far, the improvement is not things you would see if you spent time with me, but I certainly feel better inside my head: the dizziness sensation has diminished a lot, and I don't feel spaced out and inattentive anywhere near as much as I was a even a few days ago. Considering this treatment is scheduled to take a minimum three weeks, I am astounded to see improvement at to just a couple of days. I can't wait though, until some of my motor skills on my left side start to return. My left hand is still paralyzed and it is still very hard for me to walk because my left leg does not work properly. These things may take a long time to correct. I am just excited to feel this good- and to not be taking caustic drugs such as chemotherapy.
Not to mention of course, radiation to my brain. My tumor is over 3 cm in width and the radiation therapy is designed to go well beyond the actual area the tumor resides in, in my case almost 2 cm further. This tells you how much of my brain would have been killed with approved "conventional" therapy. They would have been taking out one third of my brain... Not to mention that radiation and chemo destroys the body's ability to fight infection. There is absolutely nothing good about this type of treatment - especially when you consider the doctors told me they will not cure or eliminate my cancer in that fashion.
This is been a very long and arduous journey to Houston in the middle of the summer, especially with me being wheelchair ridden most of the time and sensitive to heat. I do still feel confident we made the right choice coming to the Burzynski clinic no matter how far away. The doctors and nurses are true professionals and from what I can tell, their medicine actually works! At the very least I can say this: side effects of antineoplaston therapy are almost nonexistent when compared with conventional therapy. I know I am only three days in, and that a lot can change at any time now. But my first impression has been a good one and I'm feeling better after just a few days. So how can I complain?
I have noticed my voice getting softer, to the point where sometimes folks have a hard time hearing me talk. When we saw the doc this morning, he indicated to us that voice change is a very common affect of this type of this medicine. There again though, how can you complain when compared with conventional therapy?
We go to the doctor every morning, and then check vitals regularly along with blood. I think it is every second day blood is drawn so they can constantly measure electrolyte levels and white blood count. As long as I can drink enough water to flush the sodium content of this medicine through my body every day (6 Liters minimum) these electrolyte levels will be no problem. As for white blood count, if I'm not fighting infection these should be okay as well. They are monitored every other day ... So I think there is little chance for error.
I guess the bottom line is this: so far so good here in Houston town. Keep Lorraine and I in your prayers please as this is just the beginning of our journey.
-Paul Brustas
Not to mention of course, radiation to my brain. My tumor is over 3 cm in width and the radiation therapy is designed to go well beyond the actual area the tumor resides in, in my case almost 2 cm further. This tells you how much of my brain would have been killed with approved "conventional" therapy. They would have been taking out one third of my brain... Not to mention that radiation and chemo destroys the body's ability to fight infection. There is absolutely nothing good about this type of treatment - especially when you consider the doctors told me they will not cure or eliminate my cancer in that fashion.
This is been a very long and arduous journey to Houston in the middle of the summer, especially with me being wheelchair ridden most of the time and sensitive to heat. I do still feel confident we made the right choice coming to the Burzynski clinic no matter how far away. The doctors and nurses are true professionals and from what I can tell, their medicine actually works! At the very least I can say this: side effects of antineoplaston therapy are almost nonexistent when compared with conventional therapy. I know I am only three days in, and that a lot can change at any time now. But my first impression has been a good one and I'm feeling better after just a few days. So how can I complain?
I have noticed my voice getting softer, to the point where sometimes folks have a hard time hearing me talk. When we saw the doc this morning, he indicated to us that voice change is a very common affect of this type of this medicine. There again though, how can you complain when compared with conventional therapy?
We go to the doctor every morning, and then check vitals regularly along with blood. I think it is every second day blood is drawn so they can constantly measure electrolyte levels and white blood count. As long as I can drink enough water to flush the sodium content of this medicine through my body every day (6 Liters minimum) these electrolyte levels will be no problem. As for white blood count, if I'm not fighting infection these should be okay as well. They are monitored every other day ... So I think there is little chance for error.
I guess the bottom line is this: so far so good here in Houston town. Keep Lorraine and I in your prayers please as this is just the beginning of our journey.
-Paul Brustas
Saturday, July 2, 2011
second treatment about to start
Friday, July 1 was my first actual treatment day. We are getting more and more comfortable with the folks at Burzynski's clinic, and I think getting fond of them too. As I think I wrote in yesterday's blog entry they are knowledgeable friendly, and not shy about going above and beyond the call of duty to answer your questions... hold the doors open for your wheelchair, or backup to go over information they have just explained so that they know you have it down pat.
This clinic is a busy place! Yesterday we were on the second floor which is where they train people to use equipment and change bandage dressings and such. There is a row of very comfortable looking recliners along the right wall, which filled up with users during the course of the day- all of them getting infusions of some type or another. In addition there was another couple that looked like they were the same stage of treatment as Lorraine and I. The wife was learning equipment and how to change dressings while the husband, unfortunately, looked to have the same exact impairments that I have. For some reason however he did not walk with a cane though he looked like he he needed one badly. Every time he had left his chair I was afraid he would fall on the floor.
They spent a good hour at the clinic during the course of yesterday's visit training Lorraine how to change the dressings on my port in my chest. In addition she learned how to program the pump to which I'm tethered now 24 hours a day. There was an absolute town of information to be learned during that first visit!! The training was "live" in that when they changed the dressing on my port, Lorraine was right there to take notes and learn the process. The same for the medicine portion: Lorraine was there to take notes and learn the process while they program the pump to push this medicine into me according to the doctors orders. In addition, she had to learn the process of getting the bags of liquid medicines prepared to use with the pump... And this really is a process!! As I said though, this was life training: when I left yesterday, the pump was working and pumping medicines into me already.
Some couples have to learn to sleep with a puppy between them or maybe a baby. We had to learn last night how to sleep with this pump between us, and how to run the tether tube from the pump to me in a fashion that would allow me to sleep- yes, me the insomniac!!
I survived though and actually slept well as one of the medicines as a tendency to make me drowsy. I hope I get used to it soon, because by 8 PM last night I was dead tired. Since it is absolutely critical for me to exercise, at least walk, every single day I worry about being too tired to do so.I do not feel as if exercise is any more optional for me than it ever was... I have been told that this type of brain tumor causes markers to be put in the blood which enable clotting, and that this is something we must watch out for diligently. There are only two defenses: regular exercise and watching out for signs of blood clots.
Therein lies my concern about being so tired by early evening. It is critical for me exercise and in order for me to walk safely with this cane I must to wide-awake, not dragging my feet. I am confident that as time goes on I will get used to this medicine so this will not be an issue. Last night was just my first time but there's certainly no way I could've walked much. In fact, I lay down and was asleep by 830!
We will revisit the clinic every single day. Today is Saturday, on July 4 holiday weekend- and today is no exception. 9:30 AM I will go in for fresh medicines and to have the dressing changed one more time. Lorraine will give further training and programming the pump and getting familiar with the medicines. There are two bags of medicine in the package with the pump; we're told they're very similar. I think it's the same medicine in both bags but one is a concentrate in the other is diluted. Whether pump switches to the concentrate, I become drowsy. This is the medicine which I need to be used to.
Our visit at Burzinski's clinic yesterday definitely showed us and taught us a lot. I look forward to seeing we have surprises they have for us today.
This clinic is a busy place! Yesterday we were on the second floor which is where they train people to use equipment and change bandage dressings and such. There is a row of very comfortable looking recliners along the right wall, which filled up with users during the course of the day- all of them getting infusions of some type or another. In addition there was another couple that looked like they were the same stage of treatment as Lorraine and I. The wife was learning equipment and how to change dressings while the husband, unfortunately, looked to have the same exact impairments that I have. For some reason however he did not walk with a cane though he looked like he he needed one badly. Every time he had left his chair I was afraid he would fall on the floor.
They spent a good hour at the clinic during the course of yesterday's visit training Lorraine how to change the dressings on my port in my chest. In addition she learned how to program the pump to which I'm tethered now 24 hours a day. There was an absolute town of information to be learned during that first visit!! The training was "live" in that when they changed the dressing on my port, Lorraine was right there to take notes and learn the process. The same for the medicine portion: Lorraine was there to take notes and learn the process while they program the pump to push this medicine into me according to the doctors orders. In addition, she had to learn the process of getting the bags of liquid medicines prepared to use with the pump... And this really is a process!! As I said though, this was life training: when I left yesterday, the pump was working and pumping medicines into me already.
Some couples have to learn to sleep with a puppy between them or maybe a baby. We had to learn last night how to sleep with this pump between us, and how to run the tether tube from the pump to me in a fashion that would allow me to sleep- yes, me the insomniac!!
I survived though and actually slept well as one of the medicines as a tendency to make me drowsy. I hope I get used to it soon, because by 8 PM last night I was dead tired. Since it is absolutely critical for me to exercise, at least walk, every single day I worry about being too tired to do so.I do not feel as if exercise is any more optional for me than it ever was... I have been told that this type of brain tumor causes markers to be put in the blood which enable clotting, and that this is something we must watch out for diligently. There are only two defenses: regular exercise and watching out for signs of blood clots.
Therein lies my concern about being so tired by early evening. It is critical for me exercise and in order for me to walk safely with this cane I must to wide-awake, not dragging my feet. I am confident that as time goes on I will get used to this medicine so this will not be an issue. Last night was just my first time but there's certainly no way I could've walked much. In fact, I lay down and was asleep by 830!
We will revisit the clinic every single day. Today is Saturday, on July 4 holiday weekend- and today is no exception. 9:30 AM I will go in for fresh medicines and to have the dressing changed one more time. Lorraine will give further training and programming the pump and getting familiar with the medicines. There are two bags of medicine in the package with the pump; we're told they're very similar. I think it's the same medicine in both bags but one is a concentrate in the other is diluted. Whether pump switches to the concentrate, I become drowsy. This is the medicine which I need to be used to.
Our visit at Burzinski's clinic yesterday definitely showed us and taught us a lot. I look forward to seeing we have surprises they have for us today.
Friday, July 1, 2011
Finally! Good news:
What a difference a day makes! Yesterday (Thursday) we got confirmation that I was indeed approved to get treated at the Burzynski clinic. After the shock wore off, it's hard to describe the wave of relief my wife and I felt. It was such a long time coming, starting with the first time we were exposed to Burzynski's website and learned of his successes in treating the glioblastoma cancer type which I have. That of course, was back at home in San Diego and we have been away so long that it seems like a lifetime ago. We have been in Houston Texas for over 10 days, Midsummer, under the most extreme emotional circumstances you can possibly imagine. God has provided for us however, at every step of the way by bringing people into our lives that have helped us so much, and in so many ways it's amazing. Mind you many of these people were folks that we did not even know a few months ago!
It’s not possible to measure or explain our gratitude for everybody that contacted Congress for us nationwide. We knew we were on the right track when these officials started writing back to us requesting the specific name of the drug in the trial that I was trying to join. Once we got the specifics sent out via e-mail to these elected officials, the information was forwarded to the FDA on my behalf and I was approved! The treatment that was approved was Antineoplaston therapy, not the combined therapy which included gene targeted medicines. That was my first choice as Dr. Burzynski said he believed it to be my best chance.
I cannot change the FDA's decision however, and I'm very thankful that I was allowed to become part of the Antineoplaston therapy. Immediately the clinic referred me to a local Doctor to have a port installed in my chest to accept the medicines. This sounds scary, and it most certainly was not so comfortable- but what a really entails though is nothing more than them attaching a tube to a vein. This gives the Dr. a place to admit large quantities of medicines into my system without continuously tapping veins in my arm or hand.
So, to recap: approved, plumbed for action, space and ready to go. It is now 8 AM and my first therapy begins at 930 this morning. It has been a long time coming and I owe incredible thanks to friends, family and readers of this blog who have helped us every step of the way.
It’s not possible to measure or explain our gratitude for everybody that contacted Congress for us nationwide. We knew we were on the right track when these officials started writing back to us requesting the specific name of the drug in the trial that I was trying to join. Once we got the specifics sent out via e-mail to these elected officials, the information was forwarded to the FDA on my behalf and I was approved! The treatment that was approved was Antineoplaston therapy, not the combined therapy which included gene targeted medicines. That was my first choice as Dr. Burzynski said he believed it to be my best chance.
I cannot change the FDA's decision however, and I'm very thankful that I was allowed to become part of the Antineoplaston therapy. Immediately the clinic referred me to a local Doctor to have a port installed in my chest to accept the medicines. This sounds scary, and it most certainly was not so comfortable- but what a really entails though is nothing more than them attaching a tube to a vein. This gives the Dr. a place to admit large quantities of medicines into my system without continuously tapping veins in my arm or hand.
So, to recap: approved, plumbed for action, space and ready to go. It is now 8 AM and my first therapy begins at 930 this morning. It has been a long time coming and I owe incredible thanks to friends, family and readers of this blog who have helped us every step of the way.
Wednesday, June 29, 2011
For Wednesday, June 29, 2011
A couple of more days have gone by and still we are waiting for my first treatment at the Burzynski clinic. After we saw the doctors on Friday, they submitted a request for a waiver so that the FDA that would allow me into the antineoplaston clinical trial. The initial request was denied however as we learned very early Monday. They resubmitted, and for a couple of days now we have been very anxious to waiting for positive answer.
I am very humbled and thankful by the actions of friends and family through all of this; things such as contacting congresspeople to request this variance be put through on my behalf. It is a very big waiting game though, and of course we are very anxious. As I had mentioned in other blog posts, the weather in Houston this time of year certainly does not make it easy to sit around. This city is enormous, confusing, and hard to navigate for the uninitiated. Combine all that with my health problems and you can see how Lorraine and I wrestle day today with keeping a positive outlook while praying for the best.
God has provided for us so well during this journey we have no reason to think he'll abandon us now!! We have to keep remembering this because there are a lot of challenges. Lorraine has been so strong both physically and emotionally through all of this that I thank my Lord many times a day for her inner strength.
I am walking with a quad cane and fighting dizziness. The dizziness is a byproduct not only of the medicines they had me taking, but of course this brain tumor. As you can imagine, being dizzy and walking with a cane could be a recipe for disaster if I forget to be extremely careful. I don't even take a few steps anymore without Lorraine being right here at my side because I just don't feel safe walking. I must remain mobile though, and being wheelchair – ridden is not an option. We both miss San Diego, it's weather, our home, and of course our friends. We must wait though, and once my treatment starts it will be well worth it! We absolutely must keep our "eyes on the prize" so to speak and keep our spirits up to get through this. There are no other options unless we decide to quit, tuck our tails and return back home. That would completely waste all the time and energy we had just spent getting here to Houston, not to mention of course putting me right back into radiation and chemotherapy which is what we came out here to avoid. I married an Italian from New York… And I am Greek… So neither one of us has quit in our vocabulary. We are going to stick this out, make it happen, and I am going to return to San Diego with Lorraine healthy and cancer free!
A couple of more days have gone by and still we are waiting for my first treatment at the Burzynski clinic. After we saw the doctors on Friday, they submitted a request for a waiver so that the FDA that would allow me into the antineoplaston clinical trial. The initial request was denied however as we learned very early Monday. They resubmitted, and for a couple of days now we have been very anxious to waiting for positive answer.
I am very humbled and thankful by the actions of friends and family through all of this; things such as contacting congresspeople to request this variance be put through on my behalf. It is a very big waiting game though, and of course we are very anxious. As I had mentioned in other blog posts, the weather in Houston this time of year certainly does not make it easy to sit around. This city is enormous, confusing, and hard to navigate for the uninitiated. Combine all that with my health problems and you can see how Lorraine and I wrestle day today with keeping a positive outlook while praying for the best.
God has provided for us so well during this journey we have no reason to think he'll abandon us now!! We have to keep remembering this because there are a lot of challenges. Lorraine has been so strong both physically and emotionally through all of this that I thank my Lord many times a day for her inner strength.
I am walking with a quad cane and fighting dizziness. The dizziness is a byproduct not only of the medicines they had me taking, but of course this brain tumor. As you can imagine, being dizzy and walking with a cane could be a recipe for disaster if I forget to be extremely careful. I don't even take a few steps anymore without Lorraine being right here at my side because I just don't feel safe walking. I must remain mobile though, and being wheelchair – ridden is not an option. We both miss San Diego, it's weather, our home, and of course our friends. We must wait though, and once my treatment starts it will be well worth it! We absolutely must keep our "eyes on the prize" so to speak and keep our spirits up to get through this. There are no other options unless we decide to quit, tuck our tails and return back home. That would completely waste all the time and energy we had just spent getting here to Houston, not to mention of course putting me right back into radiation and chemotherapy which is what we came out here to avoid. I married an Italian from New York… And I am Greek… So neither one of us has quit in our vocabulary. We are going to stick this out, make it happen, and I am going to return to San Diego with Lorraine healthy and cancer free!
Sunday, June 26, 2011
Yet another very hot weekend…
It is now Sunday, June 26, 2011.
Yesterday was another hundred degree day with little relief in sight! I feel very relieved to have been seen by Burzinski Clinic within a few short days of arriving in Houston. Now it's a big waiting game; my waiver application has been submitted to the FDA so that I can get admitted into the clinical trial for the type of therapy I need, and traversed the country to get.
It may be three more days before I know the results of my application for the waiver.
Day by day, things have been okay. Lorraine has been taking exemplary care of me and I thank God every day for her and her devotion. Man, did I marry the right woman!
She prays with me, takes care of me, and loves me. What more could a man ask for?
I am extremely thankful that no new symptoms have appeared over the course of this long hard week of travel. I do notice, however, that the heat really takes its toll on me... much more than when I was healthy of course. Even the small amount of time I spend between the apartment and a car seems way too long for me. I stay in the car with the air conditioner on while Lorraine gets my wheelchair out of the trunk. That shortens the time I spend in the wheelchair of course, so that I have the stamina to go into whatever restaurant or store we happen to be going to at the time.
This is been an extremely busy week and one that I know neither Lorraine nor I would want to repeat. The travel to Houston was brutal, and when we arrived, we were greeted by an absolutely enormous city where the freeways make Los Angeles pale in comparison! of course neither of us knew what to expect, but who the heck knew that there could be such a confusing freeway system in a large metropolis. even our GPS gets confused! In fact, very often I feel like tossing it out the window because by the time we realize we have received wrong directions from it, it takes 15 min. of driving to correct the problem. You cannot turn around on any of the streets in town because there is an island in the middle of every one of them. The Texans take traffic control very seriously I guess and they only want you traveling in very specific routes. You cannot, absolutely can not, just realize that you made a wrong turn and go a different direction. You are forced to travel at least a mile up the road in extreme traffic before you can find a place to turn around such as a shopping center! So every time the GPS gives us bad instruction, it causes extreme anxiety and anger. It's bad enough to have to ask a machine which direction to go, and also course bad enough to hear wrong instructions from it, but then by the time you realize it happened it takes you 15 to 30 min. to correct the problem!!
My health has been holding up okay thank God. Other then when I mentioned earlier, about being sensitive to heat, I have very little to complain about. My sense of balance seems to be getting worse every day though, and by 6 PM when I get tired it is very dangerous for me to walk more than just a few steps.
Thank you everybody for reading, and please let me remind you to contact your congressperson Monday , June 27. get them to approve the waiver for me to get Antineoplston therapy. I cannot overstate how critical this is folks, for you to contact your Congress people immediately so that they know how to act when my name comes up for an FDA waiver or variance to guess this Antineoplston therapy approved!
I don't care if you are good friend, a regular reader of my blog, or if this is your first visit! Please contact Congress immediately so that my waiver can be approved. There is a link in the next message on this blog which will allow you to find your congressperson by zip code. Please use it, act appropriately, and most of all pray for my speedy recovery.
Thank you very much
Please remember when you write your congressman or call them, to associate my name (Paul Brustas) with the Antineoplston therapy… Otherwise it's just an exercise in futility. They need to know who is applying for the waiver and that's the waiver is for that type of therapy.
There's no way of telling how many waivers will be asked for, or what they will be for. So please folks, be clear when you contact these busy people, and tell them which type of therapy needs the waiver associated with my name.
Thank you everybody!!
If you choose to, feel free to include a link to this blog -as some others have done-In your communication with Congress. It can't hurt in fact if we can get some clicks on this blog from Congress, perhaps it will make my story more personal and allow them to associate a name with a face so to speak.
Yesterday was another hundred degree day with little relief in sight! I feel very relieved to have been seen by Burzinski Clinic within a few short days of arriving in Houston. Now it's a big waiting game; my waiver application has been submitted to the FDA so that I can get admitted into the clinical trial for the type of therapy I need, and traversed the country to get.
It may be three more days before I know the results of my application for the waiver.
Day by day, things have been okay. Lorraine has been taking exemplary care of me and I thank God every day for her and her devotion. Man, did I marry the right woman!
She prays with me, takes care of me, and loves me. What more could a man ask for?
I am extremely thankful that no new symptoms have appeared over the course of this long hard week of travel. I do notice, however, that the heat really takes its toll on me... much more than when I was healthy of course. Even the small amount of time I spend between the apartment and a car seems way too long for me. I stay in the car with the air conditioner on while Lorraine gets my wheelchair out of the trunk. That shortens the time I spend in the wheelchair of course, so that I have the stamina to go into whatever restaurant or store we happen to be going to at the time.
This is been an extremely busy week and one that I know neither Lorraine nor I would want to repeat. The travel to Houston was brutal, and when we arrived, we were greeted by an absolutely enormous city where the freeways make Los Angeles pale in comparison! of course neither of us knew what to expect, but who the heck knew that there could be such a confusing freeway system in a large metropolis. even our GPS gets confused! In fact, very often I feel like tossing it out the window because by the time we realize we have received wrong directions from it, it takes 15 min. of driving to correct the problem. You cannot turn around on any of the streets in town because there is an island in the middle of every one of them. The Texans take traffic control very seriously I guess and they only want you traveling in very specific routes. You cannot, absolutely can not, just realize that you made a wrong turn and go a different direction. You are forced to travel at least a mile up the road in extreme traffic before you can find a place to turn around such as a shopping center! So every time the GPS gives us bad instruction, it causes extreme anxiety and anger. It's bad enough to have to ask a machine which direction to go, and also course bad enough to hear wrong instructions from it, but then by the time you realize it happened it takes you 15 to 30 min. to correct the problem!!
My health has been holding up okay thank God. Other then when I mentioned earlier, about being sensitive to heat, I have very little to complain about. My sense of balance seems to be getting worse every day though, and by 6 PM when I get tired it is very dangerous for me to walk more than just a few steps.
Thank you everybody for reading, and please let me remind you to contact your congressperson Monday , June 27. get them to approve the waiver for me to get Antineoplston therapy. I cannot overstate how critical this is folks, for you to contact your Congress people immediately so that they know how to act when my name comes up for an FDA waiver or variance to guess this Antineoplston therapy approved!
I don't care if you are good friend, a regular reader of my blog, or if this is your first visit! Please contact Congress immediately so that my waiver can be approved. There is a link in the next message on this blog which will allow you to find your congressperson by zip code. Please use it, act appropriately, and most of all pray for my speedy recovery.
Thank you very much
Please remember when you write your congressman or call them, to associate my name (Paul Brustas) with the Antineoplston therapy… Otherwise it's just an exercise in futility. They need to know who is applying for the waiver and that's the waiver is for that type of therapy.
There's no way of telling how many waivers will be asked for, or what they will be for. So please folks, be clear when you contact these busy people, and tell them which type of therapy needs the waiver associated with my name.
Thank you everybody!!
If you choose to, feel free to include a link to this blog -as some others have done-In your communication with Congress. It can't hurt in fact if we can get some clicks on this blog from Congress, perhaps it will make my story more personal and allow them to associate a name with a face so to speak.
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