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Late Night Ramblings of a Tumor Head
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March 2008
 

Randy H
Date: 2008-03-25 21:49
Subject: Hedge of Protection
Security: Public
 

2-January-2008

Just sitting here early morning on “one-of-those-nights” when I don’t sleep, but get up and pace the floor all night. I don’t have these as frequently as I used to, but they do still come along occasionally. That used to be an every-night deal. Between the steroids and the thoughts going through my head, I would manage about two or three hours sleep at night, and then about two or three more after daylight. Once I learned to “lay aside” those things which doth so easily beset me, I found that I sleep better.

Sitting here reading some of the things others are having to go through makes me feel blessed beyond measure in my situation. I have been blessed with some really excellent doctors and health-care workers. Looking back over the past three months, I can see God’s hand at work in every step of this ordeal. Some people will never understand how, “If there is a god, why did he allow this to happen?” Answer? He didn’t. For 25+ years, there was a “hedge of protection” surrounding my household and family. Numerous times, there were instances where a situation could have been disastrous, yet God intervened and turned a “cursing” into a “blessing”. In over 25 years, we had never been to a doctor for anything more than colds, jammed fingers from playing ball, etc. Not bad for seven kids, now grown and having babies of their own! BUT about six months ago, the enemy managed to find a “breach” in that hedge. Someone once likened it to a great stone wall of protection, and the enemy is going to continually walk up and down that wall, chipping here and there until he finds a “weak” spot, and he is going to drive in a spike and start chipping away until he gets a spot large enough to enter. Well, he managed to find a spot. But just like the Israelites in Nehemiah, I looked and found someone to “stand alongside, together with, against” the enemy when he comes along. Our first prayer in all this was “nothing hidden that shall not be revealed, nothing secret that shall not be made known”. You can’t fight an enemy if you don’t know who the enemy is. The enemy has been identified. He has been revealed, made known, stripped bare of power, and destroyed. The enemy in this case had a name. He called himself “astrocytoma”. He has been rendered powerless and of none effect in my life. Utterly destroyed “from the very root”.  

There are also those that will ask “If you are believing God for your healing, why are you going through all these treatments, and surgery, etc.?” Good question. It would have been great to have just walked away from all this totally healed and whole. Can God do that? Without question, YES! Will He? Yes, He does. Did He this time? No. Why? Don’t know. I’ll ask Him when I get there. The thing is, it does not detract one bit from His promises, provisions or His Word. God never changes. He never moves. He is constant. Consistent. No shadow of turning in Him. WE move. We get out from under His hand. Kind of like a baby chick and its mother. The old hen sits on the nest brooding over her chicks. As long as they stay under her, they are warm and protected. BUT, if one “chooses” to wander off, they become susceptible to attack. But you know, all they gotta do is “turn around” and go back.

There are indeed natural consequences to pay for natural incidents. I do not care how hard you pray, or how long, or to who or what, if you take a hammer and hit your finger with it, it is going to hurt like hell. You cut yourself, you gonna bleed. Doctors and medical professionals are not “of the enemy”. Using them is not detracting from God and His abilities. The gifts talents and abilities they posses come from the same God that placed certain gifts talents and abilities in me. Can the doctors heal us? No. But they can provide a “better atmosphere” for the healing to take place. They can sew up the laceration, but cannot make the skin grow back together. God can. Can they heal a broken bone? No, but God can. The doctor can indeed reset the bone straight and secure it in place while it heals, though. I have always asked people, if your car breaks down, do you take it to the jeweler to get it fixed? Or if your watch breaks, do you take it to the car dealer? NO! You would take them back to the people that made them. So, therefore, if this body breaks down along the line, take it back to the OEM for repair. He hand built me. Figure He knows how to put me all back together again. Good as new. Total rebuild.

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Randy H
Date: 2008-03-25 18:03
Subject: Valley
Security: Public
 

From the beginning of all this, through the preparation for surgery, and throughout the following days, there never has been any major ongoing fears, anxieties or concerns. I am aware of the “beginning”, and have an overwhelming confidence, assurance, and peace about the final outcome. Yes. Things do tend to get to me sometimes, but I have to remind myself of the promises Ido have. You can’t let it beat you up. I have often related it to being in a “valley”. I can see where it starts, and I can see the end, it is just a matter of going through that valley to the other side. Yes, the valley is about knee-deep with “crap” that I gotta wade through, and it is slow-go sometimes, but wade through it, I will, and I will indeed come out “clean” on the other side of it. My “assurance” and confidence comes from my heavenly Father.  Understand, He is not just” Father God”, He is also my “abba” Father. Loosely translated, my “daddy” God. The One who I can run to, climb up in His lap and lay my head on his chest, and let Him put His arms around me, draw me close and comfort me when I’m all “skeered”. He calms all my fears, and wipes away my tears… God is not some ethereal being, off out there “somewhere”. He is here, now, with me. My loving Father. My peace. My comfort.  My assurance. My “daddy” that loves ME beyond comprehensible measure. The one that loves ME so much that He gave His one and only son that had been with Him from eternity past, to come and take my place in death, just  so that I can come and  live with Him forever. Stop and think about it. That is some heavy-duty stuff. Could one of us take our “only child” and send them to die, so that someone that we may never meet or may never know. (Or that could care less if they “did” know), what was done on their behalf,may live?

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Randy H
Date: 2007-07-27 03:22
Subject: ttrials
Security: Public

Went to MD Anderson Clinic in Housotn TX for second opinions and possible trials I may be eigible for. Did fin out a name for vision issues. It is PROSOPGOSIA or simply "face-blind"

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Randy H
Date: 2007-05-26 19:33
Subject: Pre-knowledge of Tumor
Security: Public

29, September, 2007

 Problems started approximately one month ago.

Point of reference is company I work for was moving from old facility into their new shop. I was setting up the new weld shop area.

 Monday a.m. (about August 30th)

Symptoms started with a feeling of “rubber legs”.  Severe aching of leg joints, and lower back.  First thought was dehydration. Started consciously drinking more water. About 16 ounces at a time, four and five times a day.  (Also taking 8-10 aspirin/acetaminophen(brand name “PainAid) every day. This “seemed” to help with lower back, but not legs and joints. Walking was deliberate and labored. Experienced mild headaches on occasion, but again, thought it could be heat/dehydration related.

 2 Sept 07 When looking in mirror, reflected image of my eyes were a light nutmeg color. Consciously started looking in other peoples eyes and noticed they were all the same tint. When looking at my grand-daughter who has deep blue eyes, they appeared blue-gray.

 (point of reference: posting on LFF”perception of colours” http://www.largeformatphotography.info/forum/showthread.php?t=28636

 

4 Sept 07

Monday at work, noticed inability to “perceive” melanin coloring in people. Hispanics, Native Americans, and Caucasians all “appear” a light ashen white with a tiny bit of reddish tinting. Everyone’s eyes all “appear” light nutmeg or gray-blue in color. Hair color is all light brown, and white. Natural red hair appears darker brown. African Americans all appear to have “ruddy” complexions with reddish tint hair, and medium brown eye color.  With no differentiation in facial, hair or eye tones and gradations, recognition is difficult. From 15 or more feet away, I can’t tell beyond doubt, who is who. I don’t seem to have any other color-perception loss. ROYGB still look correct, with differences in shadings, saturation and brilliance still being “normal”. It is only in people and melanin-toning that I am unable to “see” any color gradations or shading. Ink-printed photos appear close to normal. Silver-based film prints appear like the people do, with no differentiation in tones. I did get a kick out of looking at people closer, and being able to tell who has been coloring and/or dying, and/or bleaching their hair. And how much makeup a woman (or man) has applied. With eyes doing what they are, and not seeing the melanin coloring, these “after-market” effects stick out like a sore thumb.

 6 Sept 07 Point of reference” Visit to Zoellner Eye. After explanation of “issues” with color perception, they did a routine eye exam, and attempted to sell me a pair of glasses, and jokingly stated “maybe this will help with the recognition problem (recognizing people). I had been to an optometrist about two years previous for glasses, and the prescription was not significantly different. Not enough difference to warrant the price of a new pair of glasses. 

 My eyes continued to bother me, and the mental/emotional issue from the inability to “see correctly seem to aggravate the problems. I started developing a mild depression.

At this time, I also started to develop a tightness in my chest, with difficulty breathing very deep, and bouts of hard, unproductive coughing spells. Along with the coughing spells, I would get severe headaches. They seem to be located just behind the temple region, behind the eyes, and just above the brain stem in the back. Not unlike a “stress-related” headache. These headaches would last for about a half hour before subsiding.

 Point of reference: 12 Sept 07 Visit Dr. Agbasi at Family Medical Center, with complaint of “bronchitis” (?) and issue with eyes. No apparent congestion, and no thoughts or suggestions regarding eye issues. Stated they would do a referral to an ophthalmologist for eye testing. 

 headaches increase in frequency/duration and intensity over the next week. Still tolerable with aspirin/acetaminophen. Eyes slowly get a little worse, with letters on computer screen starting to run together. I have to concentrate really hard to type/read correctly. Having to consciously concentrate that hard is causing headaches to increase.

Point of Reference: 18 Sept  07 Visit with Dr Roby at BVA eye clinic

Eyes dilated, checked, no apparent damage. Vision test and preliminary color chart test. Nothing spectacular. Scheduled appointment for 4 Oct 07 for additional testing.

Fingertips on left hand have started tingling on occasion. Getting light-headed. Notice that if I bend over at the waist, that I get extremely light-headed and nauseated. Pain increases behind eyes.

Thought was that I may be getting diabetes, since it does run in family and nationality. Started checking blood-sugar levels. Morning lows around 87. After high intake of sugars, high runs between 95-100.  Over period of time, never dropped below 85 and never went over 98. Check blood pressure infrequently. Runs pretty disgustingly normal. Oxygen saturation was checked a few times, and was at 98% every time. I have found that if I eat foods high in proteins and fats and keep the sugar/carbohydrate intakes low (non-existent), that the headaches aren’t “quite” as bad.

20 Sept 07Problems continue to increase. Concentration/comprehension is beginning to get difficult. Having to concentrate very hard to comprehend what I am looking at. Vision has not decreased, but relativity of what I am seeing has decreased.  Kind of like I told Diana, I can still see the dots. I know what the dots are. I just can’t figure out how to connect them. At work, things that I “should” be able to do without even thinking about, and things that I have done enough to where they should be just second nature, I am having to concentrate and think very hard, to accomplish. Confusion in relational/spatial issues is increasing. I can look at a blue-print of something that I have built a hundred times before, and yet I have to study it to the point of getting a headache (literally) before I start (It is like I have never seen it before, Even though I know I have) on the part. And then, I find I am making “stupid” mistakes in the assembly of the parts. I know how they go together, and can see how they go together on the print; I just can’t seem to get them there. And when the mistakes are pointed out, I still can’t see them.

 27 Sept 07 Headache intensity/frequency/duration increasing. Almost constant headaches just back of the temple region and just above the brain stem. I have related it to kind of like a “caffeine” headache. Like in the morning, if you don’t get your “intake” soon enough, you get a headache? If I take 4, 500mg Tylenol, it subsides somewhat for a couple hours.

 I will have times when everything seems to be alright, and then my head gets “stuffy” like when you have a sinus/head cold. And immediately everything gets fuzzy. Not fuzzy like visual, but confusing. Real quick. This comes on just real suddenly, for no real apparent reason.  Nothing I physically do to cause it. Dizziness usually accompanies these “spells” initially, but that seems to subside within 10-15 seconds, and then I am left with a headache and major confusion lasting five minutes, and mild confusion lingering for about a half hour.

 28 Sept 22Worst day yet. This morning I drove to Skiatook (North of Tulsa) to take care of some business. Coming back home, I was going south on hwy 75. I knew how to get back home.I knew the streets, and recognized surroundings, but just couldn’t connect with what it was I was supposed to do. I ended up at 11th and Harvard, so thought, no big deal. I will just go down 11th, cross the river and get back on there. I ended up behind TRMC and took 15 minutes trying to figure out how to get out from behind it. Then thought, OK, I will just go over to Riverside, cross the river at 21st, and go to 75. I was at 51st before it dawned on me that I was already past 21st. No big deal. I’ll just get on 44 and go over to 75. Turned left on 51st instead of right  (probably a good thing)  and ended up at 51st and  Peoria. No big deal. I hadn’t been to the thrift store there in a while; I’ll stop in and see what they have. Got turned around in the parking lot. Finally got to the front of the store, parked and went in. When I got inside, I did not recognize having ever been in there, and could not figure out why the hell I was in there anyway. I left, and had to press the car key several times to see which car was mine. Left and told myself that I really probably ought to go home before I do something really stupid. The trip from Skiatook home shouldn’t have taken more than about 25-30 minutes, max. It took me 2 and half hours to get home. And that was driving the speed limits plus.

A couple handfuls of peanuts, a long cold shower and 10 minute nap, and I woke up feeling better than I had in days.

 Figure this was a good time to write down what has been going on.

 Sustained loud noise confuses.

 Lifting anything heavy sets off the severe headaches behind the eyes.
Lying on my side and lifting my head to look up brings nausea.

 Easily agitated.

If whatever it was that I deemed was “aggravating” continues, anger sets in.

With anger comes another major headache. Just back of the temples and back of the head. Then the confusion again.  

Trying to read and follow the directions causes’ headache, followed by “what the hell did that say????
I did a “walk-in” to see my primary-care physician on October 1st. With issues regarding vision along with headaches and now the confusion issues and having gotten “lost” while driving, Doctor Scarborough (FMC) did a referral to an MRI clinic. They were able to schedule me for the next morning.


Thing is, there were absolutely NO other symptoms to indicate any problem. Blood pressure normal. Heart rate normal. O2 saturation normal. Neuro/physical tests normal. Blood work all normal.

 

All the above was written prior to my learning that I had a brain tumor. It was not until my doctor met us a t the hospital that I had any clue there was anything out of the ordinary going on.

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Randy H
Date: 2007-03-31 06:07
Subject: CT-Scan and Guess What!?
Security: Public

Tuesday, October 2nd
A.M. went in for CT-Scan. We live approximately six blocks from MRI clinic. When they finished with scan, we left and came directly home. From the time we left the clinic until we arrived home, the clinic had called my physician five times, and she had called the house twice trying to get in touch with me to tell me to go directly to the hospital to be checked in, they would have a room waiting for me, and that she would meet us there to explain.

When we arrived at the hospital, we went to Registration/Check-in. When I told them who, I was, they offered to go get a “gurney” or wheelchair, and asked if I was alright. They immediately took vital signs, (all normal/normal, of course). I was kind of wondering “what the hell is going on”? I still had no clue what the deal was.

 

My doctor arrived just a few minutes after they got me checked into the room. She explained that the MRI clinic had detected a “mass” on the back of the right occipital lobe on the brain. My response was “ O.K…. And?’ She said that from the “apparent” size of it that by all rights, I should not be able to walk, talk, breathe on my own, have control of bodily functions, etc, etc. Basically that I “should” be totally incapacitated.  

Gotta tell ya, that will durn sure get your attention! She told us that they had contacted a neurosurgeon, and that he would be there in a few minutes to go over what needed to be done, and a time-frame for getting it done. While we were waiting on the neurosurgeon, my doctor got a print-out of the ct-scan they had done that morning, to show us. It looked like the “whatever” covered about 80% of the right-rear quarter lobe on my brain. I was told that, just “guessing” that it was a mass “almost” the size of a 12-ounce pop can. No wonder they thought I shouldn’t be coherent, much less ambulatory. But I felt better than I had in days. In full control of all my faculties. Able to see clearly. No headache. All the nurses coming in and out, and the doctors coming in and out, kept asking which one of us in the room was the patient. Seriously!!  They put a “shunt” in my arm, and started pumping mega-doses of dexamethasone corticosteroid in. With the shunt, I still pretty much had free reign to go outside and smoke. Go get some real food. Etc.  Not real crazy about the “dex”. It really messes with my emotions. After every shot, for the next hour, all I had to do was look seriously at someone, and I would start crying. Never any anger. And not really emotionally low. Just couldn’t quit crying all the time.

(Wednesday Oct 3, 2007 –) When the neurosurgeon – Dr John Main came in to visit with us, he took the time to explain about the “mass”, different “types” it could possibly be, where it was located, and the procedure he would be using for removal, and steps he would take, depending on what he found, once inside. He was extremely thorough in his explanations, and put them in terms that could be understood clearly. Not once did he ever talk “over our heads” with a bunch of medical jargon. When he did use medical terminology, he would take the time to explain what it meant. One point that he kept stressing was “quality” of life, and that he would do all he could to preserve that. He spent well over an hour with us going over everything. One of my first questions for him was “Do you believe in miracles?” He looked me straight in the eyes and said “Randy. In my line of work, you have to”. Sold me. I stated at one time, that I hated to take up his time, since I was sure he had other patients. His reply was, “they will get the time they need, just as you are getting the time you need.” (I cried) He scheduled me for an MRI brain-scan for 6:30 the next morning, with surgery set for 8:30 a.m.  Since it was still mid-afternoon, he left instructions at the front desk that I had “free-reign” until 6:00 the next morning. Cool!! Leave the hospital, if desired; go wherever, as long as I was back in my room by 6:00 a.m. I gotta tell ya, I definitely did not sleep at all that night, and I indeed did smoke about four packs of cigarettes (at least). I mean, talk about a whirl-wind ride! Just five days ago, I was at work, and now they are talking about sawing a hole in my head and taking out part of my brain!?! (Not really any brain tissue removal, only “mass”, but whatever!  Still scared the hell out of me!)

After staying awake all night long and trying to make sense out of what I had been handed the last three days, I just wasn’t prepared emotionally or mentally to deal with all of it. At 6:15 a.m. I went to the nurse’s station and told them they needed to page the neurosurgeon and offer my apologies, but that I was going to have to postpone the surgery. The nurses weren’t real understanding. “But you have an MRI scheduled for this morning, and the surgery room has been reserved, blah, blah, blah…”

And I care because??  Guess they had never had someone do that. The neurosurgeon came down to my room and was very understanding. He said “Don’t worry about it, Randy. I understand, and I don’t blame you. You are right. We’ll get you out of here, you go home and get things together, and when you are ready, call the office and we’ll reschedule the surgery”. The awesome part was, he is usually booked 30 -45 days out. The same afternoon that I cancelled on him, I went ahead and called to reschedule, knowing that it would be a while. He rescheduled for five days later. That was cool. That would give me time to assimilate all the information. Needless to say, I did not sleep for the next five days… I DID do some major re-evaluating of my life. What really are the priorities? I guess my priorities did not change, only the value placed in them. I have always had a pretty hard-set system of priorities and they are dependent on amount of time spent with them. Number one is God. I don’t figure He is going away, and I intend to spend eternity with Him. Next is my wife. I have been with her for 27+ years, and intend to b e with her “’til death do us part” Next are my kids. I’ve had them since they were born, and they will be my kids from now on. Lastly is my job. I will still have my wife and kids long after the job is nothing more than a vague memory, “IF” I don’t let some “job” take their place. With the “waiting-period” and the time to assess the situation, I “think” I am ready to go ahead with things now.

 

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Randy H
Date: 2007-03-30 21:05
Subject: Surgery Day
Security: Public

To make a short story long, the surgery was rescheduled for Tuesday, October 9th. We arrived at the hospital about 6:30 a.m. They took me back to surgery waiting, where I got to put on that wonderful gown. They took me to MRI for a last-minute, pre-op brain scan to mark my head for exact location of tumor and where they will cut. Got my I.V. hooked up, and they came in later and gave me a shot of something to begin the count-down. When they came to take me to surgery, Diana and some of my kids were there. Understand, I have a very loving wife and a very close family. When they started to take me to surgery, Diana and I both lost it. We hugged and kissed as if it was the last time we would ever do so. The neurosurgeon’s staff was all in the hallway, and the scene was so emotionally charged, his entire staff was crying before they got me out of the hallway. I abviously don’t remember anything until I awoke in recovery. I was definitely not dealing well with it all. A close personal friend of ours came to comfort/console Diana, and to pray with her/us. “The effectual, fervent prayer of a righteous man availeth much”. I honestly can’t think of another person on earth that I would rather have on my side, praying for me. Powerful man of God. I kept spewing forth garbage about “two years”. He came right back and asked me point-blank, “Is that all you want? I’m sure God would honor that request. Just let me know, and that’s what we will ask for”. Got my attention, that’s for sure. NOPE, I’ve been promised 120 years on this earth, with eyesight not dim, nor vigor abated. No spirit of fear, but one of power, love and a sound mind. The “whatever” in my head has been cursed from the root. It is of no significance in my life. It is taken care of. It does not matter the report from here on in. It is taken care of. We know the final outcome.  Alrighty then. That is what he agreed with me for, and that is what I am standing on. Not my word, but God’s. His promise. His word. Not mine. Not the doctor’s word. God’s word. Period. End of discussion. It is all good.

I spent the remainder of this day in recovery, and was moved to Critical Intensive Care. The neurosurgeon came in the next morning and told us what his assessment of the tumor was. And what he had done. His opinion was that it was a glioblastoma multiforme. He said he was able to get 90% plus of the tumor, and put eight (8) glial-wafers (BCNU chemo wafers) in the “cavity” where the tumor had been. Placed the skull piece back in place, and secured with 3 titanium “dog-bone” plates and 6 titanium screws. AND!! He left my pony-tail!! Cool!! They sent the “stuff” they removed to the pathology lab for testing. He decided that my overall physical condition warranted me going on home. It took the nurses six hours to get me released. They said they had NEVER sent someone home from CICU, and they did not know how to release someone. Next comes the long wait for pathology reports. It could have come that afternoon, or never. It did not matter to me. I know the end result. From now on, NO FEAR! I already have the “Final Answer”. I WILL live and not die.

In the meantime, until they decide “what” it is that had been removed, in order to determine if it was a “primary” or “secondary” growth, they do three separate MRI scans. One chest/abdomen/pelvic; one full body; and one deep tissue liver/kidney. AMAZING! They found exactly what I told them they would. Absolutely sparkling clear. Not any indication of anything! I’m telling you, when Daddy says “You are healed”. He doesn’t mean “kinda”. He means totally. That is not “faith”. That is absolute, total, “assurance”.

.
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Randy H
Date: 2007-03-27 17:24
Subject: Post-Surgery Set up Treatments
Security: Public
Mood:peacefulpeaceful

Waiting on the pathology labs started getting kinda ridiculous. Good thing the doc decided to close up the skull and all instead of waiting for the reports. The pathology lab in Tulsa had the samples for two weeks, and couldn’t determine “what” it was they had. So, they ship it off to the Mayo for testing. The doctors kept calling Mayo for results, and they continued to getting “????”.  In the meantime, no further treatments or anything because nobody knew what we were dealing with. For all anybody knew, it could have just been a used tea-bag that somehow found its way into my head. My kids all said it was probably an ingrown hair from all those years with a pony-tail!

Mayo pathology ended up taking three weeks to determine that it was a Grade IV Astrocytoma.  O.K. What does that mean? It took me a while to find out that it is a fancy term for Glioblastoma Multiforme.

Now, we start setting up treatments with the Radiation and Chemotherapy Oncologists. The first “chemo” doctor that had come to visit in the hospital, I refused to use. I Did not like his looks, his manner, or his general attitudes. I contacted my neurosurgeon, whom I trust wholeheartedly, and he took care of setting up chemo/radiation groups. The ones I met with are cool.

 

We set an appointment with the Radiation Oncologist first. I asked the radiation doctor point blank if she was shooting for 100% or if she was looking to placate/pacify for 12 – 18 months based on textbook prognosis theories. Her reply was that she fully expected 100%. Cool! Let’s do it. I have met with her associate and she has a very upbeat, positive outlook on things as well. They explained that due to where the “tumor” was, and the part of the brain that radiation would affect, they were going to do a nine-point treatment, at a little lower radiation level. They said this would give the “healthy” parts of the brain around the treatment area a little better chance to “recoup” between treatments, with less possibility of “collateral” damages. I will start with 30treatments. Every day for five days, with weekends off to “recover”. She explained the procedure, got me set up for the treatments, and had me “fitted” with my new mask. Seems I get to be bolted to the table while they “zap” my head. Good thing I am not prone to anxiety or claustrophobia.

 

Next we meet with the Chemotherapist. We go in, get all the paperwork, physical and lab work out of the way, and meet with the doctor.  He is “young”! I like him, though. He goes over the plan of attack with us, and explains that I will be on “Temodar” and at what dosage levels based on body mass and size, etc, etc. I had been told by another doctor that Temodar would most likely be the chemo of choice, due to its ability to penetrate the blood brain barrier. In light of that, I had already done some pretty extensive research on it, and was able to converse with the doctor about treatments and dosages and side effects etc. Etc. without getting lost in medical/technical jargon.  I will be going in very Monday during the course of treatments for a full lab workup. They will track and monitor for any variances in blood levels, to assure there are no complications. He said their main concern would be the “toxicity” levels. He gave me a prescription for a 30 day supply of Temodar, prescription for a heavy-duty antacid, and one for a heavy-duty antacid with a sleep-aid. I am to take the Temodar just before bedtime every night. That way, “if” it creates nausea, I “should” be able to sleep through it.

 

As a side note, I HATE the dexamethasone! It has started making my vision “fuzzy” and a feeling of “fuzziness” mentally. At one time during the five-week wait on pathology reports, I was “weaned” off the dexamethasone. Three days later, when my eyes felt like they were going to “pop”, back on it I went. Oh well. Maybe next time!

I asked all three of my doctors about getting off the dexamethasone. My neurosurgeon had no problem with it, as long as I was aware of any symptoms arising that would necessitate my restarting on it. My chemo doctor had no problems with it. My radiation doctor recommended staying on it. Perhaps at a lower dosage, but that the radiation “could” cause some swelling, and that the dexamethasone was probably a good idea, “but” if “I” wanted, I could cut back to a lower dosage, take it  maybe every other day, and then every other day use an NSAID. I thought I would wait until I got into the radiation treatments, see how I did with them, and try her recommendation.

 

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Randy H
Date: 2007-03-26 19:37
Subject: Treatments Radiation / Chemotherapy
Security: Public

I started the radiation treatments on November 26th, 2007 and the “Temodar” regimen on the following day. Radiation treatments aren’t as bad as I had anticipated. The group that does them is very efficient, and from time in the door, to treatment, to out the door is usually 30 minutes or less. It takes them about two minutes to get me “aligned” and bolted down. And then the treatment lasts on “average” 10 – 15 minutes. As I stated earlier, they are doing nine different shots. The smell of burning ozone stinks, though. It tends to leave a funky taste in my mouth. I have found that Ritz crackers helps tremendously! (Crackers, or Andes Mints, or York Peppermint Patties) The radiation also seems to trigger something that makes me hungry as heck too. I usually eat lunch just before going in for treatment, but as soon as I get out, I am starving!! With the location of where the tumor was, and Least offensive” targets, the treatments seem to trigger something around my right eye. By the end of the day, my right eye is hurting. Nothing unbearable, just not “normal”. And I indeed had to up the daily intake of dexamethasone. Still not large amount, but I still hate the way it makes me feel. About the third week in on radiation, I was down to 2mg a day. Feeling pretty good. Then one morning I woke up with the feeling that someone had stabbed my eyes with a fork and was trying to pull them out, along with major migraine headache. It was bad enough it was making me throw up violently. Nothing would stay down. Call to the doc, and the day spent in E.R. A CT-Scan showed swelling. Back on the “roids”! Still not bad though. Took a heavy dose that day, and went to 2mg every six hours. It seems to keep the wolves at bay. Still hate the stuff though.

 

Temodar regimen isn’t too bad. 120mg one day. 140mg alternating days. No nausea. Constipation issue no worse than it is on straight dexamethasone. (I know everybody wants to know about that!) No other side effects. Occasional heartburn/indigestion, but actually controllable with OTC antacid (tums, Rolaids, etc. and just regular suggested doses.)

 

We are starting week 5 in chemo treatment, and so far, all blood work is “normal  - normal). All vitals are still normal. I have only gained about 7 or 8 pounds since starting all this. I have grown a “spare tire” around my middle though. My whole life I have been at about 1% – 2% body fat. Slim built. (5’6”, 135 – 140 pounds) Now I am averaging about 148 – 150 pounds, have “love handles” on my lower back, and what looks like a “beer belly”. My wife, kids and family thinks it is hilarious. I just can’t seem to find the humor in being a fat, bald (oh yeah, the hair… Tell that one next) old man!! (Well, yeah, I guess I can. I make more wise-cracks about it than anybody else)

 

One of the “pluses” of the dexamethasone was where my hair was thinning on top, started growing back. Cool! The bare spots on my face (never had hair around my cheek bones. Heritage related) filled in with facial hair. I went from shaving once every two or three days, to “at least” daily.  When I started the radiation/chemotherapy treatments, I made it about two weeks in, and NO HAIR LOSS!! Yippee!!  I thought “this is cool”. Got up one morning, and thought “man! Those are good “’roids”, even my pillow is growing hair!” Went to the bathroom, run my fingers through my hair to get it out of my face, and looked down at a handful of hair! Damn!! Over 20 years without a haircut, and then just overnight, and “whoop”, there it went! Oh well. It is only hair, and it will grow back. I did not shave my head. Just cut it real short. And it seems the only place I am losing it is where the radiation “burns” are. One side, towards top, above my right ear, from front to back. I look kinda like a dog with the mange. The “burns” aren’t really that bad or noticeable. Every day as soon as I get out of treatment, I grease up my head with Aquaphor ointment. Works pretty good for keeping the tenderness and redness out of the scalp.

 

It is now my fourth week into radiation/chemo treatments. On the plus side, general physical condition is still good. Lab work all still normal/normal. Blood pressure, O2 saturation, pulse all still normal/normal. No ADDITIONAL weight gain/loss. Still maintain energy enough to do what I choose to do. No confusion. After reasonable explanation for some short-term memory issues, I seem to have gotten over that (will explain later).  Dexamethasone @ 2mg/4x daily is working out. (Still hate the stuff!) Still no side effects from Temodar.

 

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Randy H
Date: 2007-03-25 15:50
Subject: Side effects from chemo /radiation
Security: Public

Down side:

Vision is not real good. This is hard to explain. It hasn’t gotten “bad” in the sense that acuity/clarity is still reasonable. But, it is like looking through a dense fog. Even in bright sunlight, it is like a real cloudy day. I still don’t seem to have “contrast”. Closely similar colours tend to blend into a single colour. (For instance, light yellow and white.). White has a gray tint to it. I reworked a picture recently, to where I could “see” it, clearer, and I thought it looked better. Diana said it was extremely grainy looking now. I am assuming I had to enlarge it to such extreme in order to “see” the detail and contrast in colour, that it lost clarity. Within the last week and a half, I have started to develop minor photophobia (light sensitive) especially in the right eye. Dark sunglasses outdoors helps. Indoors there is not a problem. Seems odd that everything is cloudy, and yet light-sensitive, huh? I have trouble “focusing” on anything. Just “looking” is o.k. but to really “zero in” on something is difficult, at best. Makes my eyes hurt. Thank God for spell-check and grammar check. I can still get a lot of stuff wrong on here though. Letters close to same shape I have difficulty distinguishing. (Y-u, m-n, i-j, etc)

Hearing is changing. Some things I can hear better. Some things I can’t hear at all. I can hear myself breathing like I was a steam engine. Annoying as hell. I find myself speaking barely above a whisper, yet it sounds loud to me. Brushing my teeth sounds like a jet plane taking off. But someone else talking softly I never hear. You have to yell at me. Put more than a few people in a room talking and it becomes a roar.

Clarity of thought: I don’t seem to have lost any mental faculties. Memory is still good, both long-term, and (now) short-term. (see below) However! As stated earlier, the dexamethasone makes my head “fuzzy”. Kinda like being on a drunken spree. I have to concentrate a little harder to get to where I want. I told someone that the tape drive still runs, it just runs a lot slower. All the data is still on there, it just takes a while to find it.

Motivation: I have gotten lazy. It would be real easy to just sit on my fat backside all day and do nothing.  I have all these “projects” that I complained I never had time to finish. Now I have time, but tend to put them off. I got all kinds of excuses. Wanna hear ‘em?

 

Short-term memory problems: This issue was brought up with one of my doctors recently. This had really been bugging me. I could lay something down, turn around twice and lose it. I would go to do something, get sidetracked for a moment, and forget what it was that I was going to do. It was really shaking my confidence. I thought “buddy, if this is how its gonna be, shoot me in the eye twice. I ain’t likin’ it” (Don’t take that wrong. I am definitely NOT suicidal, O.K.?) Prior to being diagnosed with a brain tumor, and having it surgically removed, my memory was tack sharp. My mind was sharp. Immediately after being told I need to have a craniotomy and the “possibilities”, seems my mind just went to hell in a hand basket.  The short term memory seemed to slip a little further away day-by-day. Scary, at best.

What Dr B had to say about it made a LOT of sense, and after listening and thinking about it, seems my short-term memory has “miraculously” returned. Explained in next journal entry.

 

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Randy H
Date: 2007-03-25 12:12
Subject: Short-term Memeory Loss? Not now!
Security: Public
Mood:aggravatedaggravated

Short-term memory loss?  Not now!

Dr B explained it like this: (extremely paraphrased, and condensed. Apologies)

Before the “tumor” you did things without even thinking about them. You lay something down, and don’t think about it again until you need or want it. No problem. Go get it. Life was pretty “normal” and things easy. Now all of a sudden, you have this “thing” growing inside your head. Immediately upon diagnosis, it becomes the number one priority in your life. Your whole life starts to revolve around that “thing”. It consumes your every thought. Surgery! Treatments! Medications! LIFE!! Put quite bluntly, it is some kind of scary shit going on in your life. You tend to start thinking in terms of how you are going to manage your entire life around that “thing”. How is it going to affect my job? My family? My life? You go to sleep thinking about it, and you wake up thinking about it. When you talk to others, they want to know all about “it” and how you are doing. Forget last week’s ball games, or get-togethers. Let’s talk about ME. You lay something down, walk away from it, and your mind is definitely not on what you just layed down, or where. It is on that “thing” in your head. It has taken over more than just a space in your head, it has taken over your entire LIFE! Doctor B’s solution? Put the situation aside and move on with life. Start thinking on things that are really important to you. Your family. Your life. Start living your life again. Forget about that “thing” in your head. Yes, the treatments, meds and all are still there, but don’t make them the priority in your thinking. When I was able to finally get a grip on this, and started thinking about all my “projects” and working through them, and quit allowing that “thing” to consume my every thought, the memory started kicking in. I can actually remember what I did just ten minutes ago. And as an added bonus, confidence levels in other areas started picking up again also. I quit worrying about how that “thing” was going to affect my life, and made the decision to start living “my life” again. Amazing. I get off my pity-party, and things start working.

 

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