Diagnosis: High Grade Oligodendroglioma
Last Updated: 2/7/2011
Doug Mc Intosh
San Francisco Bay Area
Caught totally by surprise, I learned I had a Brain Tumor the hard way. I had been going to various Doctors in an attempt to learn what was going on with me. My lovely wife had noticed several significant changes in my behavior and personality and was not hesitant to present them to me.
Outside of the fact that I had a very lackadaisical attitude about items of importance such as “work” etc. It seemed as if I preferred to sleep in instead of reporting to work in a proper timeframe. I apparently also was not performing up to speed either. That is an assumption due to having a couple of Customer complaints regarding my punctuality, work ethics and perhaps more.
These items had never been a problem in my life style previously. Although previous positions in the working world had allowed me to be more flexible than current. I was working as a Sr. Field Service Engineer servicing various forms of High Tech. Microscopes using various sources from lower power Lasers to High Tension Electron Beams. This particular working world is supporting more commonly, PHDs in various capacities from Materials Analysis to Cellular and Microbiology. Needless to say, being punctual was important.
In April of 2002, I lost my job from the above-described items. Even then, I still maintained a lackadaisical way about me. Ongoing, my wife noticed things were increasing in severity whether I noticed or not. I finally agreed to see a Psychiatrist to perhaps investigate my issues more deeply. The problem there was that all I could provide (since I was living in a world of total denial) was details that my wife pointed out. Now whether or not I gave them good description is unknown. These few sessions were not to investigate her in any way. These sessions were short lived and fruitless in any event.
Well shortly after that, I developed a very sore shoulder that a heating pad took care of. About the same time, I was developing headaches in the Migraine category. I then saw an Orthopedic M.D. who basically said that for my probable pulled Trapezious shoulder muscle, to keep up the heat. As for the headache, also keep up the intake of Aleve. Aleve took care of the headaches very thoroughly and quickly.
Tuesday, July 23, 2002:
I shortly there after, visited my Primary Physician who prescribed a Migraine medication that basically did nothing for my headaches. I stuck with Aleve that did. They also had given me a form to get a blood work-up. That involved a 12-hour fasting period so when 12 hours arrived, I went to the facility and had them draw the blood needed. I distinctly recall craving a cigarette all that morning and early afternoon. So while returning home, bought cigarettes to satisfy my severe addiction. What a total waste of $money$.
Upon returning home, I came in through the front door, closed and locked it as typical, turned and hung up my keys and all I remember is falling sideways into a bookcase next to our front door. With pictures and such now scattered about the living room, I remember looking up and down the hallway where my wife was looking at me with a look of shock and total concern. She immediately asked me if I was okay and what happened. Well, right there I made a huge mistake by trying to soften the situation. I looked up at her and said in a very childish tone, “I fall down.” She immediately believed that I had reverted to a level of childhood. That was indeed a bad idea. She also observed at that time that I was chewing some gum at an extremely fast rate.
She then called 911 Emergency and they arrived in extremely short notice. I was still lying on the floor, talking but not moving and for what reason, I don’t recall. I did know that I’d soon have to get out of the way of the door so the Paramedics could gain entry to our home and me.
When the doorbell rang, I slithered away from the door and my wife opened it. Both the Fire Dept. and Paramedics came in to check things out. The Paramedics wasted no time in getting Vitals. They then attached sticky backed items on me in order to clip a portable EKG machine to me.
After checking all the results, they basically stated that there was nothing alarming in what they were reading but that it is not normal for someone to just fall down without a good reason. So, we then loaded me up in to their Ambulance where our stairs are so steep that I walked to the Gurney outside. Once loaded, the doors closed after my wife received directions as to where we were going, and away we went. I do recall trying to slow things down just a bit so that I might have a smoke before boarding the Ambulance. Talk about dumb!
Next thing I remember was waiting to see a Doctor at Kaiser, Hayward, CA Emergency. My wife and mother in-law also arrived and we waited together. When Dr. Hung, a Medical Doctor arrived, my wife described what had happened and what led up to my collapse. One of the key items was “blank staring” and “continuity breaks” in my speech. The Dr. commented about the staring and pointed out “you mean like he’s doing right now?” My wife answered yes and I remember the Dr. saying loud and clear, “CAT SCAN.” So that’s where I went next, to wait for the scan.
I have no idea of the timeframes between all these events but I know it must have taken some time for each. Eventually I was rolled into a room with the Scanner, transferred to its table and setup for the scan itself. I do recall watching the optical part of the machine rotate around my head and I could hear the comments of the Technicians operating the Scan. They were saying such things as “whoa, that’s golf ball size.” When I repeated that statement, they tried to cover up with details that that statement didn’t pertain to me. That later proved to be wrong. They were trying to soften the situation too. Once Dr. Hung viewed the CT Scan films, I was immediately transferred across the Bay to Redwood City where Kaiser’s Neurosurgery department is.
Wednesday, July 24, 2002:
I have again, not much recall of that night or much of the next day either to recap the events prior to surgery. I do remember Dr. Joel Steinburg ordering an MRI to get a better picture than the CT Scan could provide. That is primarily due to being able to increase ‘contrast’ by injecting a small amount of a rare element named Gadolinium.
What he later that afternoon reported, was that I did have a large Tumor and a Cyst as well that would have to come out right away. Surgery was scheduled for the following early afternoon. Because of the results of the MRI, he’d observed that there was an offshoot growing over my right eye, stemming from below the main Tumor. Therefore he had changed his strategy on how to approach this operation.
He now intended to make the incision from Temple to Temple, over my Forehead just behind the hairline as pointed to in the above picture. He would then pull my Forehead skin down, out of the way and remove what he could of the Tumor and the offshoot by accessing it above my right eye ball. He then commented that he’d see me once more after surgery since he’d be leaving for vacation after Friday July 26.
Thursday, July 25, 2002:
The surgery was moved forward this morning since they’d had a schedule change. I was at that time totally out of it except for a few glimpses of time where I only remember bits and pieces. I remember how cold it was in the Prep. Area and in the Surgery Lab. Fortunately they had warmed blankets for warmth of the Patients, whew.
The next thing I remember was being in Recovery and asking if my wife could be in there. Just before they brought her in, Dr. Steinburg chatted with me and explained that he’d removed as much of the Tumor he could see. However, digging into the Brain where he could not see is not a good idea since the Brain could then suffer severe damage. This meant that Radiation and chemotherapy would then be mandatory. The tumor was diagnosed as a phase 4 Gliomablastoma that later on, the Pathologist reported that it actually was downgraded to an Oligodendroglioma, the difference between the devil and a witch.
I remember my eyes being so dry I could hardly blink when my wife was allowed in. They would not furnish eye drops but she could apply some sort of cream that resembled Vaseline. It did help to an extent but teardrops still would have been great. Shortly there after, I was wheeled back upstairs towards my room where a very large crowd of family and friends met me. Boy was that a total surprise and really something very special to me and will never forget.
Once in my room, I was to relax and couldn’t at all. I was so ramped up from what I do not know to this day. I know that I was given an I. V. of an Anti- Inflammatory of some sort and who knows what else. I did not get up and walk for any reason but I couldn’t stop talking for even a few seconds. That basically went on until I was released and beyond.
That night was really difficult to sleep. I couldn’t get my head comfortable. I had a nurse outside my room all night long. After complaining to him (Jose) long enough, he brought me a “fuzzy on the outside” ice bag with ice chips and a little bit of water in it. I could make that as soft as I liked and lay it on my head directly on the source of the pain. They had also put onto my legs, blood pressure cuffs that would cycle on their own about every 10 minutes. Of course they awakened me when they’d cycle and of course they never cycled at the same time. Oh well. I was so appreciative of life that it was difficult to complain about anything whatsoever.
Thank You Lord Jesus for my life restoration and extension. As time went on from here, I would more greatly appreciate this blessing of life since I was very close to going the other way. That was all explained to my wife as to just how close. So close in fact that should the tumor return in any way, I was estimated to not make it longer than 6 months. Well today is 07/18/2005 and I am still thanking the powers above for so many things along with my health and “life.”
Friday, July 26, 2002:
Dr. Steinburg visited for a few minutes that morning. He commented that he’d really beaten me up pretty good since my head was still very bruised and swollen. Of course he asked how I was doing and feeling which I responded “best I could under the circumstances.” He knew that already since I’d bet that’s a common response along with “I could be better.”
He also said I could be released on Saturday or Sunday depending on how I felt, apparently leaving the decision up to me. I was to be seen by his Assistants on both days if still there Sunday. I was feeling much better by then and the Catheter had been removed as well so I could get around without dragging a wheeled device along with me. About that time, what I wouldn’t have given to wash my hair. They’d cut just the top down close and left the remaining around the sides. That looked pretty bad and actually, a shower would have been nice too. It was commented from my sister in-law that I looked like Siskewitz on NYPD Blue and I thought I strongly resembled Robocop without his helmet.
Saturday, July 27, 2002:
I was visited by the first of 2 Assistants of Dr. Steinberg’s. We discussed how things were going and since I was still somewhat woozy and my balance was not yet 100%, I chose to wait to see what the next day had to offer.
Outside of special visits from family and friends, not too much medically to contribute about this day.
Sunday, July 28, 2002:
I was paid a visited by another of Dr. Steinberg’s Assistants. We also discussed how things were going and since my balance was now better and I was no longer woozy and very antsy to get out of there, decided this was the day to be released and the earlier, the better. Fortunately for me, he agreed.
I was then allowed to take a shower and was escorted to another room where the showering facilities were huge. It was also equipped with various pieces of apparatus to assist patients with various disabilities and/or restrictions. Fortunately my wife had furnished me a bar of the soap I prefer to use along with some decent shampoo. Boy was that shower absolutely great.
I then changed into some casual clothing and waited a couple of hours to be released. That meant leaving with medications including Vicodin for pain. My wife and I waited patiently in my room and eventually I was given the go-ahead.
Monday of the following week, I was scheduled to visit a Surgeon in Fremont to have my stitches removed. A couple of days later I was to visit both Oncologists, Medical (Dr. Peter Deck) and Radiation (Dr. Ben Fisch). Not too much involved there in explanation of what was to take place.
For Medical Oncology, I was going to be taking 5.5 weeks worth of Temodar at 140mg per day. For Radiation Oncology, I’d be paralleling Chemo at 5.5 weeks but did not include weekends. The weekend break allows healthy tissue a brief time to recover and/or heal. Both of the Oncology treatments went very smoothly and without a hitch.
I was also having MRIs taken during this period along with an occasional X-RAY (at the Rad. Oncology clinic.) The X-RAY was to check to ensure that the ‘Lead block’ shields we properly placed. Over the 5.5-week period, I did lose a considerable amount of hair at my Temples. This had to be from the Radiation with perhaps only a small contribution from the Temodar.
During a follow-up with Dr. Deck, he stated that since I’d had no reaction from the Temodar, he’d like to put me on a second round. Since I had no reaction the first round, why not take a second? This was to be 400mg for a five-day period with 23 days off. Shouldn’t be a real problem so I agreed.
Let me tell you... Not to scare anybody off of a second round. I had never felt so sick in all my life. I’d sit on the seat in our shower letting the water hit me direct on the back of my head and have the worst dry heaves in all my life.
Again, don’t let that scare anyone. I learned the trick in taking such a large dose. The trick is as follows:
I’d get up in the morning and have my usual coffee. Since I was not to take the Chemo capsules until four hours following eating, I flipped to the other side. That was, I could eat 1 hour after I’d swallowed them.
About 11:00 or so in the morning, I would take one of the Anti-Nausea medication pills I’d been given and never taken during the first round. I would take the Chemo about one half hour later or so. I would then ensure that I would eat a meal that was at least warm. If it was hot, that was okay too. I learned the hard way that a cold meal was not the best thing. A cold meal was more likely to come back up. So warm to hot was an important detail to follow. I also noted that the first and fifth day were the slightly more rough of the five-day intake period. Again, not to scare anyone since if I had to do it all over again, I would since it would put me further into Remission.
I had been given a couple of other referrals from a very reputable source. That was to make sure that I ate each day, Romaine lettuce whether in a salad or however. That would give me sufficient vitamins for a daily need. The other was to ensure that I took in some Lutein in any form. Seemed Vitamin tablets that contained all the daily requirement along with Lutein was readily available along with a huge variety of green vegetables, Broccoli perhaps heading the list. I still take the vitamins today along with a daily 400mg dose of Dilantin (anti-seizure) medication I will probably have to take the rest of my life.
The collapse at the front door the day that Our Lord allowed me to make it home before I fell, is classed as a seizure. That had its own brand of drawbacks since at least in California, if they learn of a seizure, DMV suspends your Drivers License for six months. If you should have the misfortune of having another seizure during that time, the clock starts over again and if another, so on so forth.
When the six months were up, I received two items in the mail. One was the information that I had an appointment at the County’s main DMV office in Oakland. The other was that I was to take another driver’s test in a vehicle, no written test. That test was scheduled during the appointment in Oakland. I passed and am again able to drive… WHEEEEEEEEEEEEW. Relying on local transportation works but makes travel tough.
So life continues today… I really do appreciate life so much it is beyond description. When I look back at what went on leading up to and during my recovery period, it is mind boggling to comprehend it all. I am so appreciative of my wife, bless her heart for enduring all the emotion she must have gone through. She also continued to work through the majority of the more critical time period once released. Other family members stayed with me to monitor my actions and behavior throughout the day. I must have done okay since I never received any bad reports from either of them. I suspect I talked their ears off. Thank you so much Marlene. & Joe.
When I was still in the Hospital, our Church’s Pastor and Deacon visited me. They had eventually located me since neither of them knew my last name. They only knew me as Brother Doug. Somehow they fortunately located me and had a good laugh over it.
Pastor Rupert and Brother Manual’s visit was truly a highlight in my life along with many others of course. They gave to me, a “Hands On” prayer that receives a huge honorable mention and praise. During this prayer, as always I had closed my eyes. While Pastor was touching my right shoulder with his left hand and his right hand touching my forehead in the area where the Tumor had been at the right Frontal Lobe. Brother Manual was on the opposite side with his right hand on my left shoulder. At one point, I felt this powerful sensation where the Tumor had been. This sensation is way beyond description. It wasn’t magnetism, heat, cold, warmth, electricity, tickling, pinching etc. I had to open my eyes to see to what I owed this incredible feeling. It turned out that Pastor’s right hand was now in front of the right side of my forehead about six or so inches away. The additional and incredible thing about this is that even to this day, I still feel that sensation that began during their prayer. It is slowly subsiding but I do still feel it. That is so powerful to me.
I have always regarded it that Our Lord Jesus has paid me personal visits to ensure that I healed properly and that any and all of the Demon’s influence is rebuked. Thank you again as always Jesus. I praise your most Precious Name Jesus. I also believe that when I still feel the sensation, He’s back checking in on progress and rebuking any and all demonic spirits away.
There was one more “Hands On” prayer that also receives a huge honorable mention. This came to me from my wonderful wife Jeannie and sister in-law Marlene. Between the two of these prayers, how could I miss being completely healed by Our Lord? I also have to include my Mother In-law Ruby for her prayers and visits as well. She remains a “breath of fresh” air to me. In fact, all three of these ladies are very special to me since they are all like a breath of fresh air alone or joined. Together, they are a tremendous trio that can never go without honorable mention. Quite a powerful trio they are and deep in faith as well. I can feel their “power in agreement” whenever I am in their presence.
My mother Lucille and my father Ray flew to the Bay Area from Phoenix right away that was not the easiest thing for them to accomplish. They along with my Sisters Sandy and Pat and their husbands came often to visit as well. That also was truly a delight and something I will never forget. Ray and Lucille back in California was actually quite refreshing as well. It had been a few months since I had seen them from a prior visit to AZ and to “air travel” to California, for them had to be quite an ordeal and taxing.
I was visited by so many that the list would pages long. I was also being prayed for from so many and from far off places as well. That would include Scotland, Holland, Brazil and covering the USA. That list too would be pages. I can only express my sincere appreciation for their prayers and how priceless they all are to me.
I continue to have follow-up visits with Dr. Deck to monitor my progress and/or current condition. They typically follow MRIs which to date show no new Tumor growth. They will continue to take these films indefinitely. That is not a problem with me especially since they are completely painless. I also continue to take 400mg Dilantin.
One of the remaining things I am concerned about is my vision. Since I'd had Lasic surgery a couple of years prior and following the Tumor extraction, my site has changed dramatically and is still changing to date. I am again wearing glasses with ‘progressive lenses’. Even with these lenses, I know my site is changing over time. I am convinced that the offshoot from the Tumor had influenced my right eye’s rotation/tilt etc., stigmatism or not.
When I returned home, I resorted to watching TV from across the room with 2X Mag. Dr. Dean Adell’s reading glasses. Go figure! They are only intended to be good for reading etc. from about two maybe three feet away. Again, over time my vision is improving slowly so I should get my eyes examined again in the near future.
All in all, I am in good health and typically in good spirits as well. I do so enjoy and appreciate life and my wife so much. They are both wonderful things to have and cherish. I do feel the best thing of all for me to keep is my faith in Our Lord. I don’t believe for a moment that without him, I’d be here today and have what I do have no matter how sour I may feel on rare occasions.
And oh yes, I did quit smoking “cold turkey” and still have an occasional desire for a Menthol but refuse to give in to the Demon spirit and influence. I truly wish I had stopped long before the Tumor was discovered. Smoking had been a vise for me in believing that since things were not right with me and I had at one time felt right when I did smoke, cigarettes might be the ticket I needed to feel better. Boy was that a fallacy. I am so thankful that I have not had a cigarette or tobacco in any form since 07/24/2002
Thank You so much Lord God
Thank You so much Lord Jesus
Thank You ALL who were there on the day of surgery and all the days following for your support and prayers.
Thank You to all of Jeannie’s immediate family and mine.
Thanks to Moms and Dads, Brothers and Sisters, Nieces and Nephews, Cousins and In Laws for your total support.
Thank you for enduring so much from me and the situation Jeannie. You were so wonderful and great throughout this entire ordeal and still to date. I had never doubted your love and affection for a moment. If I’d had any doubts (which I didn’t) and was looking for proof (which I wasn’t), I’d need not look any further. I’ve always said since then, that if I had one item of regret in the shuffle of all of this, it remains that the time of my surgery had been moved forward without your knowledge, therefore you could not be there at the time they wheeled me in for surgery. I had such a positive attitude about my condition and outcome that I totally hadn’t acknowledged the possibility that I may not survive the surgery. Therefore, I had not said anything to you regarding details and the fact that if I didn’t survive, we’ll meet again in Heaven and that I do love you so much. My love and affection for you is beyond any words. You were there when I was in recovery and you have been there for me since as well.
2/18/2006 Update - no change!
My latest news of total interest is: since Feb. 2, 2006, my Dr. has given me 2 more years to consider me out of the woods. YES!!!!!!!!!!
3/25/2008 - My Medical Oncologist has declared me as Cured / Healed however you want to express it. A whole new outlook on life for sure.
2/7/2011: No change! I just have to let you know that I am still here, well and doing fine!