Douglas Mark Blouir Sr, survivor of an AVM stroke,
is survived by his wife, Pamela Gail
I'm now 52 years young. I tell people that I'm 7 years old now. 7 years since the bleed. I'm totally retired! No more trying to work for me. I'm still married to a great lady (Pam) (21 years). Our kids are grown and flying from the nest. The youngest is attending Purdue to become a teacher.
AVM Bleed In 1994
5 March 1998
My name is Doug Blouir, I live in Portage, Indiana. I had an AVM that bled back on October 2, 1994. I had no indication that I had any kind of a problem. I had Worked a double at my job at Bethlehem Steel and had come home and gotten my wife to go to our bowling league that we were on. After that we were taking our sons girl friend home and I was driving when I started experiencing an extreme pain in the right side of my neck and head. I pulled off the road and told my wife that she needed to get me to a doctor or the hospital and that was the last thing I remember until about six weeks later when I came to after they had removed me from the respirator that I was hooked up to.
They later did a MRI and CAT scan after I had had time for the blood to dissipate in my brain. It was found that I had an AVM in the right ventricle of my brain and at first I was going to have an Embolization done to block off the AVM but they couldn't get into the area needed because it made such a sharp turn and the vessel was so small it was then decided that it had to be resected and had to be removed by surgery.
I underwent much therapy and can walk almost normal again I also have most of the use of my left arm and hand back. I recently returned to work at another job since Bethlehem Steel made me retire. I think that I'm too young to be retired since I still have one son in high school and one son attending art school in Chicago.
People need to know that they can survive an AVM bleed and do alright if they put their mind to it.
Update: 9 Mar 98
At the present I'm preparing to go back to work at a new job as an electrician for a small company servicing the steel mills in the area. My retirement from Bethlehem stands and they won't allow me to return there. That's okay since they must continue to pay my retirement each month and will have to increase it when I'm dropped from SSI. So I get a raise for returning to work somewhere else ha ha! That's got to get someones attention there and make them see that they are mistaken in not returning me to work because I have some handicap from the bleed. I'm still improving every day and hope to continue. As I'm making every effort to regain all of the physical ability I had before the bleed. The company that I'm going to work for seems to believe that I can and will be capable of doing the job that they have hired me to do.
Update 18 Nov 98
Seems like I've been going on for such a long time since the AVM bleed. I'm now retired and trying to learn to live with it and not get too bored sitting around. I decided to retire from working anywhere since it became obvious to me that it is just too dangerous for me to be in an industrial environment. I took a couple of bad falls at the plant I was working in due to the fact that I do have some disability left from the bleed. I have given myself more then enough of a challenge in trying to return to the work force as an electrician in the kind of environment that I was use to. The plant I was at even had me climbing ladders to mount overhead cranes to repair them. That alone is quite an accomplishment for me to have done on a daily basis.
Update 30 March 1999
I just got back from Chicago and sat down to write everyone and let all know the news. It appears that I may have a bleed on both sides of my brain and I get to go back Thursday for a angiogram of the brain to help define what is happening and what to do to fix things if it can be done. That's a rather depressing report but, I already know that I can depend on the Lord helping me through this latest problem.
The doctor was surprised that this was there and that I haven't gotten back to 100% from the last time I was there and they had work on me. Well I'm all set to go back for the test and see where I go from there but, I really don't want to go through any more surgeries. I don't want to say this isn't fair but, that's the way it feels. Sorry for the depressing news when I get back from the angiogram I'll write now to let you know what is found.
Update 9 Apr 1999
I finally have a chance to sit down and let everyone know how the angiogram went. It looks as if the blood on the MRI wasn't there or at least it didn't show up on the Angio. The doctors don't understand what was on the MRI since nothing of any importance showed on the tests they did. The only thing they could say for sure was that I had some swelling of the brain that was unexplained or they could see no cause for it or anything else. So I get to wait 2 months and have another MRI and go back to see the doctors in Chicago again to see if there is any change. I really appreciate all the words of encouragement and prayer from the group. I'll try and write to all who sent me mail as soon as I get some time.
Update 10 Jun 1999
I went in for a new MRI at a new place (new to me)and they refused to do one after they took an X-ray of my head and had a doctor look at it and he said that I had metal in my skull, he pointed out my shunt and the pins that were used during my surgery. I told him that he didn't know what he was talking about! He then informed me that he was the doctor and I didn't know what was done to me. The University of Illinois Hospital Faxed them the report on my surgery and they still didn't believe that I had no metal in my skull.
Well I went back to the last place that did an MRI on me and had one done several days later and some nerve racking later. I have since taken the MRI and gone back to Chicago to see my Neurosurgeon. He and another doctor looked at things and surmised that I no longer have any swelling and can't find any reason for it the last time. They have recommended that I go back to physical therapy and get going on rehabing my left side and my balance again since they did see some atrophy around the area of the surgery and it's right at the control center for my left side.
So the saga continues. I'm waiting at this time to hear from the state about going back to school so I can change my vocation. Also Social Security is reviewing my status at this time since it's been five years that I've been drawing disability. And I still can't believe that I'm a half century old now!! How does things like that happen to us?
Update 18 Nov 1999
Well to start with I just lost my SSDI. I've already started the appeal process. They said that I was well enough to return to work now. I haven't worked since November of 1998 because I had several bad falls at the place I was working. My doctor sent me back for some rehab to help with my balance since that was what was causing me to fall. And at that time he told me not to work anymore. I figured why not and I've been trying to get use to the idea of being retired. I had been getting SSDI for the past five years now and it was time for me to have a review, so they sent me to their own neurologist. He did a neuro work-up on me and at the end of it he made the comment that he thought that I might still be handicapped. I waited several weeks and finally got the news that I was being dropped from SSDI as of November 1st. This notice came on November 12th. Great notice huh?
Well since my last update my youngest son has joined the Navy and leaves in May of 2000. His older brother saw the deal that he got and joined the Army. He leaves Jan. 6, 2000. My wife and I will be suffering from empty nest syndrome too soon it seems. I have just gotten a job offer that requires me to work at a desk. I think that I'm going to look into it and I'll let everyone know how that turns out.
Update 25 Dec 1999
It seems that my doctor thinks that I'm trying to rewrite the medical journals. They found that I had a blood clot in my heart and they are trying to dissolve it with blood thinners, something that just isn't done when a patient who has had a bleed already. They found that I have a small hole in my heart that isn't to be worried about since it is something everyone is born with and it heals in the first few hours after birth unless you're me! I'm going to send more info later. I'm a little tired and hungry at the moment. So more later.
Update 12 Jan 2000
I went back to Chicago to see my Neurosurgeon Dr. Aussman. The new Neurologist that I'm seeing thought it would be best since I'm now on a blood thinner(Coumadin). Dr Aussman said that it shouldn't be a problem since looking at all of my MRI's and such my AVM is totally gone!!! The doctors here think that I'll be on the blood thinners for about six months in an effort to dissolve the blood clot that was found in my heart. It was orginally thought that it was from a patent foraman ovale (a small hole in the heart). I'm told that everyone is born with it and some unlucky people still have it. It normally heals in the first few hours after we are born. They say that I don't have that problem and don't know were the blood clot came from, only that I need to be on thinners for now, something that isn't done for a person that has had a bleed in their brain.
I'm still haggling with Social Security about my disability. Don't know how long that will take. I'm really feeling much better now and I'll update all later About SSDI.
Update 3 Feb 2000
Found out what is causing blood clots to form. I have a rare genetic disorder called Factor 5 DNA Mutation. I'm now being told that I'll have to be on blood thinners for the rest of my life. I've been looking for any info I can find about this on the net. The doctors also said that my brother and sisters should be checked for this and that my children should also get a check for this. I'll keep looking to find what I can about this latest. Seems I just can't do something simple.
Update 11 Mar 2000
I have volunteered to go to the hospital and talk with stroke victims and their families with the Home Health Services of area Visiting Nurses. I also am going to work with them to improve the SOS (Survivors of Stroke) group. The group is very small now and I know that there must be more people than 5 or 6 that have had strokes in this area. This is a necessary thing and there needs to be more of a support group than there is at present. Well I'm going to get myself more involved as a way to keep from going nuts sitting around now that I'm retired for sure. I'm still delivering meals to shut ins for the Meals on Wheels program in the area.
We leave for Georgia on the 20th to go to our sons graduation at Ft. Benning, Ga. Our youngest son was tested for the DNA mutation that I have and it seems that he has it also. The Navy has the report on it and faxed it to Great Lakes and we are waiting to see if it causes a problem with his enlistment. Well I'm trying to get myself as busy as I can. I'll send more later if anything comes up that I think might be of encouragement.
Update 30 May 2000
Well the roller coaster ride continues. I spent the day at the hospital because I had a sever convulsion. I haven't worried about seizures since I had a shunt put in in 1995 by Dr. Aussman in Chicago when he did my resection to remove the AVM and Aneurysm and I had a seizure the next day from Hydrocephalus since my brain produces too much fluids now. Anyway it seems that I now am having seizures from all the damage from the surgery and the first stroke.
I have a new Neurologist and he is really good and I like and trust him. Something that's a must! He has put me on a new anti-seizure drug that won't react with the blood thinners that I take(Coumadin). I just love to take pills(HA-HA NOT!)
My youngest son is home now. The Navy gave him a medical discharge because of the Factor 5 DNA Mutation that he inherited from me. He is looking for ways to pay for school now since the Navy took away all the GI benifits that he would have gotten to help pay for his college education. He wants to be a school teacher as does his older brother.
It seems that Social Security still thinks that I can return to work and they are taking away my SSDI. I have appealed this again and I'm getting a lawyer to get this all straightened out. I really can't understand how they can overlook what my doctors are telling them. My doctors all agree that I can't and don't need to be working again.
Well enough of the bad stuff. I'll try and have a more upbeat update next time.
Update 30 Aug 2000
Just to let you know that I'm to be the guest speaker at a symposium in South Bend, Indiana. I get to be the speaker about surviving a stroke and will be followed by a doctor from Rush Presbityan(?) in Chicago, he will be followed by a physical therapist. All this is to be on the 13th of September.
I'm also the speaker at the next SOS (Survivor of Stroke) group meeting in Valpo, IN on Sept. 5th Seems that everyone thinks that I have more than half a brain left. I'll lead off with a joke about how I went to Chicago to give the doctor a piece of my mind and he kept it. I plan on passing on all the web sites that I have found to be so helpful about Stroke and Aneurysm and will be sure to bring up the site you run. I think I said quick?? Oh well you know me.
Update 20 Dec 2000
I'm writing to let you know that I have in my hot little(?) hand the decision of the Administrative Law Judge that heard my appeal on the decision to take away my SSDI. It says at the top of it "Notice of Decision - Fully Favorable". The next bold type line says "This Decision is Fully Favorable To You". He said in it that he believed my Doctor of record more then the one that the Social Security sent me to because he sees me on a more daily basis and has access to all of my medical records. He also said that I'm a 51 year old "closing approaching advanced age". My understanding of this is "Older than Dirt". I believe this means that I'm of an age that further schooling and training wouldn't help to get me back into the employment scene.
Anyway I will have a better Christmas not having to worry that they are taking away my SSDI payments. I can send more info from it to anyone that would like to know more about what all it said. I also would like to thank everyone for their prayers during this stressful time. AND MERRY CHRISTMAS TO ALL.
Update 3 Apr 2001
I'll try and keep everyone up on what I'm doing for fun now that I'm retired. Looks like Pam and I are going to open a coffee shop here in town with some computers sitting around that people can use to access the internet. If that isn't enough I'll try something else to get in trouble with.
I got to spend my day at the Emergency room yesterday. I had a bad day of dizzyness and went there only to be told that I had vertigo. I don't think that is the case since I now have the vision on my left side back after not having it for about 5 years now. I'll be seeing my neurologist as soon as I can and let him tell me what he thinks it was since I don't think it was "Vertigo". The ER doc said she didn't like cases like mine because they go against the norm that they are taught. Once again I'm just not normal. They did the MRI and stuff like that to rule out another bleed so it's not anything like that.
Update: 26 Mar 2002
Well this is a little depressing. I wanted to slap my Neurologist. He is running all the test to see if there is any regrowth in the AVM that was removed from my brain in 1995. Seems I'm having a little trouble with my left side not wanting to listen to what I tell it to do. My balance is terrible again. I'm now having seizures and I can't drive because of them. They changed the amount of meds I take for seizures (increased it to 700MG twice day. I take Triliptal in 350MG tabs now.)
I just got back from having a IVP test run because my regular doc thinks I may have kidney stones. Seems I can't feel pain and wouldn't know if I did or not so he said that my last seizure was brought on by the fact I had a urinary tract infection. When they did a recheck on it they found I had pus cells in my urine so they think it may be from stones in my kidneys.
I have an appointment with the neuro doc later today and will get the word on what is happening with that and will let everyone know what he says is the verdict on the regrowth.
Update: 9 Apr 2002
First off I want to thank everyone for the prayers, they worked. I found out that I don't have kidney stones and the doc thinks the seizure I had was caused by the urinary tract infection that I had. He won't allow me to drive for the time being until it's been a few months. So I get to sit around here at home for the present and try and think up other ways to get myself into trouble.
I also went to the neurologist and got his input to all of what I've been through lately. He said there is NO! regrowth in the AVM at this time. He also said that as far as he can tell it was totally removed by Dr.Ausman when he did my surgery back in 1995. That was a relief and a load off what little mind I still have. Anyway, thanks again.
Update: 11 Jul 2002
Went to the doctor yesterday, found out that I do have Osteoporosis. In talking to my GP and my Neurologist I find out that it was a combination of taking Dilantin and having been given Steroids to reduce the swelling in the brain after the bleed in 1994 that caused me to have Osteopenia (thinning of the bones). They also tell me that there are other anti-seizure drugs that cause the thinning of the bones that I now have, but the drug that I now take is not one of them. That's good!!!! I'll have to take a new med to help rebuild my bones and that it can be reversed. That's Good!!!!
I'm doing much better since I fell and broke my nose. I also got the okay to go back to the drivers seat instead of just riding along. THAT'S GREAT!!!
Update: 9 Oct 2002
Pam and I have been selected by the governor of our fine state to be part of his "Partners in Policy making" for the disabled of the state of Indiana. We will attend 8 months of school in Indianapolis to be trained on the ADA laws and then become advocates for the disabled in our area. We will go there once a month for school and then we are looking at becoming the Co-chairs of the Mayor's council for the handicap here in Portage.
I can't seem to sit still long and I'm getting into more things to do (Pam says trouble). Everyone at the site can become advocates for the research of Aneurysms and AVM's by writing their Congressman and Senators about funding. I did already and received letters from Senators and Reps. thanking me for my interest and they say that they will look into it. (yeah-right) I think the only reason they are aware of Aneurysms is because Sen. Bob Dole had one recently and had it repaired. Anyway that's some of the trouble I'm getting myself into lately.
Update: 5 Mar 2003
I went to the neurologist yesterday and found out that I did indeed have what he called an "aura" before I had a seizure last week. I had been sitting in church when I had the taste of copper in my mouth and a sense of deja vu which I can't describe. I had my wife take me out to the foyer and there I went into a seizure.
She and couple of guys from the church got me into our van and off to the hospital I went. The neurologist said that the sense of taste is a partial seizure and the de ja vu is also a partial seizure and both are signals of an impending seizure. He increased my meds until I was able to see him yesterday in his office. I am now taking a new medication for seizures that have to be built up and then will be taken off the old one for seizures.
The fun part of all this is we got to rib the pastor about the sermon. He was wondering if it was that bad since about 20 people got and left with me and my wife to go out to the foyer because I looked so bad. He said that he would check with some of us the next time he was going to preach about tithing again.
As usual I have to keep this narrative going and elongate it some more. I hope that the next update isn't so down as I'm not real happy about the idea that I can't drive again for a while by state law because of the seizure.
Update: 23 Apr 2003
I guess that my narrative is going to get more and more convoluted as life goes on. I just got in from having more tests. It's now been determined that I have Sleep Apnea. I get to go back this Thursday and I'll be fitted for a mask that I'll have to wear while sleeping that provides a positive pressure and keeps you breathing when you stop in your sleep. I had no idea that I would stop breathing in my sleep until my wife, bless her, said something to my Neurologist about the fact that she was losing sleep due to my snoring. She said I could wake the dead I was so loud. He then said he should of thought of it before as it could be why I'm always so tired. He had thought that I was having a reaction to my anti-seizure meds. Any way it looks like my wife and I will be getting some sleep after I go and get my new sleeping aid.
They also noticed that my Oxygen in my blood was lower than normal so I will be checked to find out why. I think it could be from the fact that I have Asbestosis in the upper 3rd of both of my lungs from working around the stuff for years.
Update: 23 Jun 2003
Pam and I have graduated from the Governor's Partners in Policy Making classes we have been taking for the last nine months. Pam was given an honorary diploma because she attended all the classes with me as my care giver since I don't drive at this time (seizures). I also want to let everyone know that they can attend this type of schooling in their own state and learn about the disabilities movement in our country and how the ADA works and other things like how to deal with the bureaucrats in Social Security and others places, by looking for the Partners in Policy Making in their state government web sites. Many states now have this training. It's provided by the United Cerebral Palsy Organization on a nation wide scale. Many states have adopted this and the governors work with PIP when it comes to issues that deal with disabilities. Back to me now after the commercial.
I'm now on a new anti-seizure med as I became allergic to the old one. I'm doing great with it and haven't had a seizure since the first week of April. I still can't drive until it's been (I think) 6 months seizure free.
Pam is looking at ways to retire and join me in the bliss of not working, lie on my part as I can't stand retirement. I still thank everyone for all the prayers and want them to know that they are always in mine.
Update: 22 Jan 2004
I'm alive and well in the, "Natural State", as it is called, Arkansas. Pam and I have moved there to retire to our own small paradise of 6 acres. We bought a business in town (Mammoth Spring, Arkansas). See I told you I could find more trouble to get into.
I have found a new doctor in West Plains, Mo. She changed my meds for seizures as she said it should be twice a day that I take it. She also said that one of the side effects is headaches which I now am suffering. I have to go next week for a CT scan so I'll be sure to let her know about the problem. I'll let all know what if anything is found when I have the scan. Maybe they'll find a brain.
Update: 04 Feb 2004
Saw the new neurologist at West Plains, Mo. Should have asked the family if they knew a better place then that. She didn't like the fact that I only took 200 mg of Lamictal each day and upped it to twice a day 400mg. I'll be seeing my GP and asking him to send me to Jonesboro, Ar which has a teaching school at the hospital there. Seems one of the side affects to Lamictal is headaches. Boy, do I now have them.
Update: 23 September 2004
Pam and I are doing great in the natural state, Arkansas. We spend most of our waking time running the pizza joint.
It's fast approaching 10(TEN) years since I had the bleed and then had surgery to remove the AVM and Aneurysm that caused it. I'm back in rehab for my gait and problems with my hip. I'm now able to go to the VA hospital in Mountain Home and Little Rock for my meds and any needs that might come up. The doctor I see in Mountain Home wants me to have a new AFO made for my left foot seeing as the one I have is the first one and it doesn't really fit my leg any more, seems the muscles on the left have all gotten quite a bit smaller since they don't really work as they used to before the bleed.
I'll be seeing a new Neurologist in Little Rock through the VA. Love the fact that I no longer have insurance since good old MA Beth went under and got bought out by a company called ISG (International Steel Groups) it really stands for "It's the Same Guys"!! At least the VA is helping out with the costs of my meds.
Pam and I are finally going to be grandparents. Our son Tim and his wife are expecting in May. We (Pam & I) both call each other grandpa or grandma wantta be's when we talk to little babies now and have for quite some time.
I still hear from some of the people in the group and try to answer from time to time. I want them all to know that I really appreciate them and all the prayers that have come our way and will continue to pray fo each of them.
Update: 10 October 2004
Seems I have spent the last couple of days running from one ER to another. I had a seizure at the resturant and Pam ran (drove, I can't run any more) me to the ER in Ash Flat, AR where they said the best they could do for me was tell me to go ahead and take my meds for seizures early since they were such a small facility and send me on to the next place that had a larger ER 20 miles away. Well I had Pam take me on home since by that time I was feeling better.
The next day we contacted my Dr. and she wanted me checked out by an ER that could really evaluate me. That ER is in West Plains, MO and that's were the Neuro Doc is that had me increase my Lamictal and I became allergic to it. She put me on Keppra and started me out at 500MG twice a day. I then saw a Neuro Doc in Jonesboro, AR who upped that to 750MG's twice a day. The doc at West Plains looked at things and upped it to 1000MG twice a day.
The doc at West Plains said when she put me on Keppra that it did have a side affect that causes depression, but not to worry she could give me something for that. My regular doc is putting me on something for my colesterol since she said I have a high normal. I questioned it and she explained that I had already had a stroke and that puts my numbers at a lower point then what is normal. It's 185 total and she wants it at 80 and she explained that the future looks like they will want me down to 40 on total LDL & HDL. It looks like I'm on the pill merry-go-round. All this and I can feel the cold fingers of depression creeping around me. So, keep me in your prayers.
Update: 20 November 2004
I went to Little Rock and met my new Neurologist. He seems to be very nice and I do like him and he was very receptive to all my questions and he answered some of my fears for me. Like the fact that Keppra has a side affect that causes depression. He told me that since I've been on it for a long enough period that it shouldn't cause me any problems and that it is one of the better meds for seizures if people can tolerate it.
He also told me that I'm not an epiliptic that I have a seizure disorder caused by a build up of scar tissue from the surgery to remove the AVM and Aneurysm. He said what is going on is a misfire of the synapses because of the scar tissue and they can't always get the signal through the tissue now.
I got to see the presidents (all but Ford) at the opening of the Clinton library in Little Rock. It's right next to the expressway. The day we went to see my doc was when they were dedicating it. OH the traffic! they blocked all the exits on or off for a mile on either side of it so it was a mess.
We got pictures of the new grandbaby, it's due in May and one of the pictures looks like the baby is waving at us (cute).
Anyway I'm doing great for someone that the docs said would be six feet under 10 years ago. Once again thanks for all the prayers and e-mail.
Update: 23 February 2005
I've been in quite a bit of pain lately. Seems that I have a tear in the lining of my intestine. The docs called it a fissure. I've been seen by different docs with different opinions. At first they said I had a Fistula and it may have an abscess and need surgery asap. I went to Little Rock to the University hospital and they came up with the Fissure diagnosis. In the mean time I get to wait and see if it manifest itself any better. So I'm at my wits end with the pain and don't know if I can handle anymore pain.
My wife and I just celebrated our 25th wedding anniversary. We both are sleep deprived because of the pain and my not being able to sleep. Anyway I need some prayer as does my wonderful wife for having to put up with me. I'm no longer driving.(fear of having a seizure and hurting someone else). I'll let all know if and when I have any resolution with the pain.
Update: 28 April 2005
I can't believe the news that the doctors gave me after the Fistulotomy. He found that yes I had a Fistula and also had a Fissure that was located on a mass that was too big to remove at one time. The test results came back positive for CANCER. I'm now scheduled to go back in a week for some more tests and to see if they can get a handle on the size of this thing. We will go from there to decide what to do next.
Right now a lot of people would be so pissed off at God for doing this to them on top of what I've, they have already been through. Some may even complain WHY ME? I see this as another opportunity to be positive and show the docs that they aren't God and He is in control and will take me when it is time ;-) .
On the good side I have lost 42 pounds :-P . Poor way to diet and lose weight though :-) .
Prayer would be appreciated and not for just me. Pam needs it as much as I do. I no longer drive and she is stuck with doing all these things for me. As I get more news on this I'll update the group.
Update: 11 May 2005
Went to Little Rock and saw the surgeon. What he said isn't all that great. He told us that it's the first time he has ever seen this type of cancer in this location. He also gave us some options. 1st do nothing; prognosis would be just months to live. 2nd have surgery to remove it and the prognosis is better; 20 to 25 % still living after 5 years. This type cancer isn't responsive to Chemo or radiation.
I asked him if it were him would he go to a place that specializes in cancer treatment. He said he felt comfortable at the hospital there and would use those facilities. He also said that places that treat cancer only, have to make a profit and that they would treat me as a number. I kind of agree with that logic.
The surgery would be done on July 8th and I'll have to go into the hospital 4 or 5 days earlier to come off the Coumidin and be put on Heparin to control my clotting problems. I'll have to have a permanent Colostomy since they will be removing most if not all of my rectum, the size of the mass dictates this.
I didn't live through a class four bleed only to be taken out now by cancer. Someone asked me if I knew what the Lord has for me to do yet. I still don't know what it is! The doctor said that the only way to treat this is with surgery. I'll be having the surgery and I'll be out living the predictions again.
Update: 21 May 2005
I saw the Oncologist. He said that he himself had never seen cancer of the type that I have in the location it is in. He had them do a CT on my pelvic area and my lower abdomen. They found a couple of points that they want to take a biopsy of because they are swollen areas in my groin (Lymph glands that may be involved in the cancer.)
I will go into the hospital on June the 30th a few days early so they can stop my coumidin and put me on Heprin to control clots. They plan on doing a complete Colostomy on me and it will be permenant. This doctor also told me that there is no treating this cancer except to remove it. It's not a real aggressive cancer, but can become so if left to it's own devises.
I'm under the impression that the docs think they can get this by removing it. I plan on living a long time and seeing my first grandson (born Wednesday, our oldest boys first child) grow up and have kids of his own. My youngest son Doug II had me crying on the phone. He said that he isn't even married yet and wants his kids to know their grandfather, not just hear about him from people.
I've been singing a Heuy Lewis song alot lately. "I want a new drug". Seems the one they give me for pain don't really do much except take the edge off of it for a while and put me to sleep.
They plan on doing a full CT on me and see if they can find any other areas that may be affected. They called this a Neurosarcoma (one doc) another called it a carcinoid. I'm still looking at all I can find out about this stuff, you know me.
Prayers are needed and appreciated. And if I get there before you I'll be ready to introduce you to our gracious Lord. No that isn't defeat creeping in. It's to let all know that yes I know the Lord and will be ready when he wants me.
Update: 31 May 2005
A doctor called from the hospital yesterday and let me know that they were cancelling my surgery. Seems that they have a treatment they want to try first before they do anything. He told me that they had got together (Hematology and Oncology) and decided that this would be the best course of action at this time. I like how Pam and I were included in the discussion. Seems like I could have a say in how I want to be treated.
I go down tommorrow (May 31) for a CT of my upper body to see if they find any more problem areas. I plan on sitting there until I see someone that can give me some answers as to why I wasn't asked how I wanted to proceed with this. I know it may save me from having a bag hanging from my body.
Just got a call from the doc again while I'm typing this. They (Pathology Dept) now say that it is a small cell tumor and can be be treated very easily by Chemo. This doc said to see the Oncology Dept. and see what is going on there. The doc I saw there is leaving to go to a hospital in Chicago so I don't know who I'll get to see about this. I'm glad that this is a teaching hospital, but sometimes I think they need to get together and talk more with each other.
We are leaving in a few minutes to go to Little Rock so I won't be available for a few days until we get back. Anyway that's where I stand at the moment.
Update: 2 June 2005
Just got word from my doc that I'm going to go into the hospital on Friday and they will do my PET scan and then I'll have my first Chemo treatment. I'll be in the hospital for 3 days according to the doc. I should be released on Monday and be home after that. As soon as I get in I'll let all know, I'll also try to let all know what Chemo treatment is like.
Update: 26 June 2005
I wanted to let people know that I'm doing good with the Chemo and the Radiation, so far. They gave me three treatments of the chemo at the hospital when they installed a portacath in my chest so they could do the chemo easier later on.
I have had several days of the radiation and haven't really had much problems with it until now. Seems I'm in quite a bit of pain in the area that they are focusing on with the radiation on my right side. The pain may be there on the left, but I don't have much feeling on that side since the stroke. I will be going down to Little Rock Monday and have some more Chemo done at that time.
They have me on some pain killers that do a good job when I take them. I hate taking pills, so I do make myself suffer a little before taking them. I don't want to wind up hooked on them and have to deal with that later on.
Pam is doing well for someone that has to deal with my problems. Her dad is in and out of the hospital now himself with cancer. It kind of drives her crazy that we live so far from her parents now. We're working on getting them to move down here with us where she can take care of them also.
I guess I'm just kind of venting here so I'll get off for now.
Update: 11 August 2005
I'm at a loss at this moment to bring myself to report the loss of my Father-in-law. After I had the bleed my wife's Mom and Dad moved in with us and took care of me while Pam worked. He passed away in his sleep at the hospital ICU in Michigan City, In. He just went to sleep and shut down. He had been fighting cancer for over 10 years. He had prostrate cancer. He died of Lymphoma and Pneumonia.
We had made the trip up there to see him before he went to the hospital. Pam and I got there and we took him to the ER because of the pain he was in. We will miss him everyday. I know that I will miss him as he was an inspiration to me with his fight with cancer.
My fight is still on going. I will have more Chemo on the 11th. I think the tumor has shrank and it seems to be smaller as far as I can tell . I see the Radiologist later today. Wish me luck. I'll never give up and plan on drawing Social Security at age 65 not just SSDI the real thing.
Update: 13 August 2005
After seeing the radiologist he released me as he believes that the Oncologist will be doing all the work that is left to do to pronounce me cancer free. I had another Chemo treatment yesterday(8/11/05) and it looks like I'll only have 3 more. Then they will do a endoscopy and look at the tumor. If it is still there they believe it can then be removed and I'll be cancer free at that time.
This is great news since we lost our dad Pete Pennington last month. I feel the pressure of the tumor still being there, but it is vastly smaller then it was, so I truly believe that I have another miracle working in my life.
Thanks to all for the Prayers,
Update: 2 September 2005
We went to have my chemo done and saw the doc first. He said that the type of cancer I have is very aggressive and had already spread to my spine and liver by what he saw in the cat scan that was done the day before. I asked about the outlook of a possible cure and he said that I'm looking at months not years. So the grim reaper has caught up to me and I'm still fighting back. I took another chemo treatment yesterday.
I'm going on with the outlook of God didn't have me live through a major bleed inside my brain to have cancer bring me down. I will beat this thing and draw my real Social Security not SSDI ( means I have to be in my 60's and I'm only 56 now). So you'll have to put up with for a while longer now.
Pam is taking all of this very hard having just lost her dad. I'm taking shot to rebuild my red blood cells as the chemo has wiped out quite a bit of them. I'll let all know what's happenin' after the next cancer treatment.
Update: 23 September 2005
Not a good report! The Oncologist I'm seeing now finally gave Pam and I some kind of a time span I have left per him. It's not good since the cancer spread to my liver and my spine. I have another CAT scan and he will know more, but at this time he is saying months. So we contact the Cancer Treatment Centers of America (cutting edge place and we going there ASAP. Once I have a set date I'll let everyone know. I really love this great group and thank them one and all for all the prayer.
Update: 16 October 2005
Thought that I'd let you know that we are at home for now. We had a lot of things happen at the hospital in Tulsa. First thing that happened was I wound up in an O.D. and didn't know it. Once they got it to where I knew reality again, they started working on me. After talking to the head doc there they say they think they can get me back into remission. I only pray for this small favor. Anyway I'll let you know more when we find out as we still have to go back for more radiation later this month.
Update by Douglas M. Blouir II: 22 December 2005
I'm sorry it has taken so long to send you notice regarding my father, but we have been unable to access his e-mail account. I am Douglas Blouir II, Douglas' son. My father, your friend and a survivor of an AVM stroke passed away December 6th of this year to complications from the cancer that you know he has been battling. My mother, Pamela had brought him home from Cancer Treatment Center of America in Tulsa, Oklahoma on December 5th, and had checked him into a nursing home, Shady Oaks Nursing Home, near their home, in Thayer, Missouri. He was too weak to continue chemotherapy, and was in need of more care then she and I could render in their home at Mammoth Spring, Arkansas. His weakness was a result of not only his battle with cancer, but on the weekend preceeding Thanksgiving my father had had another small stroke which has been atributed to Coumidin failure.
As I reflect on my father's life, it can not go without mention that in many ways, for both good and ill, he was defined by how he lived as a survivor of stroke. He took what many would have used as an excuse to give up, and found a way to instead use his life experience to inspire those around him. He spoke to his congregation about apreciating every day you have, because tomorrow is never promised. He became an outspoken advocate of stroke and stoke research to his senator and congressman. He would speak to anyone, anywhere he could about his experience, and would tell them to be aware.
Douglas Mark Blouir Sr, survivor of an AVM stroke, is survived by his wife, Pamela Gail Blouir (Pennington), three sons, Kristopher, Timothy, and Douglas II, and one daughter Kari.
Author no longer active March 18,2011
© Copyright 1998 Doug Blouir