All dressed up

images-4and no where to go! The one thing that I can derive any satisfaction from is working. Yet I’m sitting at home now, feeling very depressed and useless. I realize that I am only two weeks out from my surgery, and I need to be able to heal, but I also feel the need to be working. Although I can no longer drive, and actually riding in a car is as dangerous a task as any at this point, I can’t help but want to return to work. At the same time though, I am beginning to feel anxious, depressed and paranoid. I truly think that I am beginning to have panic attacks and I am afraid to go into places that are full of people. I’m afraid that I will have more seizures or that I will just drop dead.

While the scar on my head is easy enough to see, inwardly, the scars on my mind are less obvious. I know that I am walking around with a hole the size of a golf ball in my brain!images-3 Only recently has the “bone flap” healed enough to stop moving around when I cough, sneeze, of have a bowl movement. I can literally watch my “skull flap” move up and down in the mirror!  On occasion, I can “hear” fluid sloshing around in the cavity left by the tumor. Still, I am glad to be alive, yet I am VERY anxious about the future and what is in store for me. Right now I am waiting on the “final” pathology report. Dr. Blum said that I have either a “Primary lymphoma” or a “metastatic mixed cell tumor” that could be made up of a variety of cell types. The former being easy to treat, and the latter being very difficult to treat because it would mean that I also have another form of caner elsewhere in my body. Although Dr Blum stated that he didn’t believe that my tumor is a GBM, yet lymphoma also seems unlikely in that it is part of the lymphatic system and the signs and symptoms do not, on first glance, appear to match. Dr. Blum has always hedged his diagnosis with “I think” or “It appears” or “I believe” even when it relates to the tumor not being a GBM, so that diagnosis is still open.

My inability to drive is also VERY depressing to me. I am no longer afforded the opportunity to just pick up and go as I please. Driving has equaled freedom since I was age images-516. Now that I have had 4 seizures in a two day period, I’m no longer allowed to drive, and in this small town there is no “public” transportation to speak of. I am dependent on my my wife, Karen, or my room mate, Brad, to drive anywhere and everywhere. While I do take Keppra 500mg BID for my seizures, I’m very concerned that I will never be able to have the freedom to come and go as I please again. Keppra is a very difficult drug to get off of. Just titrating it, in and of itself, can and does cause seizures. As a matter of safety, I will not drive again until cleared by a Neurologist, but I fear that clearance may never come.

All of this combined, along with my ongoing and deepening depression, has me feeling like  the world is crashing down around me. In addition to the all of the above, I am still showing side effects of the removal of my tumor:

  1. My pupils, although mostly equal and reactive, are much larger than they used to be, in my opinion. They are nearly blown out most of the time, but they still react to light to some extent. Every doctor that I have brought this up to has told me that they are normal. Karen and I both think this is not the case.
  2. I am still having tremors in both hands. Although they are called “minor” by my doctors, working as a handyman or any type of physical labor, is going to prove difficult. Fine motor skills are a key requirement of just about any job out there.
  3. Despite repeated denials from the surgeon, I do have vision changes. I have had times where I can see/sense fluttering motions in my peripheral vision. I have also noted that when I watch TV that things just do not look right anymore. There is a graininess to the picture, or something along those lines that makes watching TV distracting.
  4. I have began to have headaches in the back of my head and in the front of my head where the tumor was removed.
  5. I also still have issues with my short term memory that often leaves me wondering why I walked into a room, or where I put an item. Yesterday I forgot what medications I took.
  6. I still have trouble remembering or thinking of words that I used to remember with no problems.
  7. Despite doubling my Zoloft for depression, I still find myself depressed more than ever. It is not a crushing depression yet, but it is always there, pushing me down, further and further. Note that I was only taking 1/2 of my prescribed dosage to begin with, so doubling it only brought me up to my prescribed dosage.
  8.   I have also found that little things that never bothered me before, are making me angry and frustrated. The happy, yet quiet person I used to be, is slowly being replaced with a person that I don’t know anymore.  My rage often turns into a quiet internalized frustration that makes me not even want to be around those closest to me. I find that I am beginning to have a low tolerance for BULL SHIT. I go from 0 to 100 with the snap of a finger, yet still manage to keep it internalized for the most part.
  9. Nothing feels or seems RIGHT to me anymore.I’m not sure why. But everything just seems or feels a little “off”. It’s just not right…..

Although I am not an overly religious person, I am more spiritual than religious, I refuse to pray for myself. I know that there are many people out there who are praying for my full and complete recovery, which I am very happy about, I also know that there are many people in the world who are much worse off than I am.To me it feels selfish to pray for myself, I will leave that to others. I do however pray for others. This is a belief I have always held, even before the brain tumor revealed itself.

I am hopeful that, given time, my symptoms will fade away. Bit by bit. Day by day. Hour by hour. I am also hopeful that writing about these issues will give strength to others facing uncertainty in life, be they physical,  emotional or both.

~Rob

 

My journey so far…

…step 1 is complete. 

Pre-Surgical Markers

Surgery is now complete. It has been a few days now. 5 days total so far, including day of surgery, 2 days in a Neurological ICU, and2 days in an Osteo-Surgery Medical Recovery Floor.  Thus far, my recovery is going quite well. I woke up the same day. Surgery took about 5 hours, plus recovery time. 

  • My first day, actually 2 days since surgery didn’t start until around 11:30Am, just consisted of 
  • me not coding in the Surgical Recovery Roomand
  • make sure I woke up

Incision

So now that I’ve passed those 3 conditions, I am basically up and about. My pain is very minimal, and seems only to occur at night as I lay down. 

As far as my current status, I do have some cognitive/memory issues along with minor hand tremors. The memory issues are improving daily. The hand tremors are likely due to side effects of medication.  Those should clear up as I continue to recover and, hopefully, get released today. 

-Rob

The rest of the tests….

November 7th was another long day in Henderson. This time at Steinberg Diagnostics for a MRI with an with out contrast, and a MRI-Spec. The staff there were great. The whole thing only took about an hour and a half. I did ask for a cd-rom of the images, to see for myself, where this tumor is. It took a while to find it,

Tumor
My Tumor

and not being a Neurologist, Neurosurgeon, let alone a doctor, it took a while for me to locate what I “think” is my tumor. It was a complicated process figuring out how to manipulate the three sets of images contained in the cd-rom. There is a viewer that comes on the disc that allows you to view the images many different ways, all the time seemingly linked together so that as you scroll up or down on one image, it changes 2016-11-07-3that image all the while cutting through a different image in a coordinated fashion. As I moved through the one image on top, which is a frontal view, it automatically moved through the second image, which is a top down view, thus showing a sort of 3-D image of the brain and tumor. This is actually an over simplified description of what was going on but it gives you the basic idea of how it worked. It took quite a while to figure out what I was looking at and looking for. Although in the top image the tumor appears on the left side, on the second image, it appears on the right side of my brain. It took a while to finally figure out that the second image is shown with my 2016-11-07-1feet towards you, and my head away from you. Therefore the right side is actually my left side. At first this caused me to dismiss these images, but I could find nothing else that looked remotely like a tumor. The 3rd image shows the tumor from the side view. All told, there were 572 images taken in 3 different MRI studies that day.Many of the images seem to be irrelevant, at least to me. This last image shows the 2016-11-07image viewer and how it interacts with other linked images from the series.But for the tumor, it was a fascinating tour through my brain. It proves wrong all the people that ever said I didn’t have one:) So far, since being put on Keppra 500mg BID(Twice a day), I have been seizure free. There have been two apparent side affects from this new medication. One being that It is making me very tired, although that seems to be getting less and less. The second one though, and its not listed anywhere that I can find, is that, as many men my age have a harder time urinating, now it flows like Niaggra Falls:)

My journey

This is the post excerpt.

Sunday October 9th, 2016 was like any other Sunday at the Western Caughey Compound. We were all sitting around binge watching The Ranch, which is a great show. This is where it gets blurry for me because I had a full blown grand mal seizure. Karen and Brad just kind imagesof stared at me for a minute, unable to comprehend what they were seeing. My right arm had locked up, which because of my herniated discs in my neck and spinal stenosis, was not that unusual. But then Brad noticed that I was trying to talk, which I do remember, but nothing would come out. Then Karen saw my eyes roll back in my head and I began to convulse violently, and she knew right away that I was having a grand mal seizure. That was the last “clear” memory I had.

They tried to dial “911” several times, but were unable to do so, due to panic I think, they finally got through…”Is he breathing?” asked the dispatcher, yes he is. “Do you have dogs?” the dispatcher asked, yes five of them. Lock your dogs up. “Do you have a locked gate to your property?” Yes we do. Unlock it was the reply….we are on our way, look out for us.

images-1Karen and I both know what to do for grand mal seizures, from observing hundreds of them in previous jobs that we worked at, often not even calling “911” because the person had a known seizure disorder.But none of that prepares you to see a loved one have a sudden onset  grand mal seizure. Brad was in a state of controlled panic, although he did manage to get all 7 dogs locked up, open the gate, and flag down the ambulance.

As is normal with many seizure victims, I was uncooperative and combative with the ambulancedownload.jpg crew. They strapped me in the gurney, I promptly unstrapped myself from the gurney….and so it went, until they had had enough and restrained my arms. I do not remember most of my visit to the local E.R. out here. They did do a CT scan which they claimed showed no abnormalities so there was no conclusive reason for my sudden onset of seizures. They wanted me to wait(hours) to be transported to Las Vegas for further testing, but in my altered mental state, I just decided that I wanted to go sleep in my bed tonight so I signed myself out AMA-Against Medical Advice.

Flash forward to Monday morning 10/10/2016. I was supposed to stay in bed, Karen was going to bring me a coffee, and then go lay down for a bit more. I promised her I would stay in bed. I  didn’t keep that promise for long. I soon got up and went into the computer room and got on the computer. I had work scheduled for that day, and was trying to reconfigure my schedule to allow me the day off…..at least that’s what I think I was doing.  It was at that point I had another seizure, this time falling out of my chair, scrapping my head on something which released a torrent of blood all over. Brad heard the commotion and came in to find me convulsing and covered in blood, then I urinated on myself. My seizures lasted about 1-2 mins each. All told I ad 3 more seizures that day.That day I was cooperative with Pahrump Valley Paramedics. I was transported to our small,somewhat incompetent hospital out here in Pahrump. I was not so cooperative there, continuously ripping out my IV They do the best they can, but Pahrump isn’t a desired destination for skilled doctors. I also seized at least once in the ER. At this point hey decided to transport me to Spring Valley Hospital in Las Vegas by ambulance instead of Life Flight. since by then I was essentially stable at that point. An ambulance ride to Vegas is $5,000, a chopper flight is $30,000, but I digress. I do not remember any of this. They gave me a large dose of Ativan in Pahrump. That was Monday morning, I have little to no memory until Tuesday around 3AM or so when I woke up in my hospital room alone. I was alone because they would not let me have visitors until I woke up. I slept most of Monday and much of Tuesday. At Spring Valley Hospital they repeated my MRI scan with and without contrast. They also did pelvic, abdomen and chest scans to see if I was riddled with cancer….I am not. So the good news is that this is a primary brain tumor. We will not know if it it benign or malignant until it is surgically removed and put under a microscope. My neurosurgeon is cautiously optimistic that this is a benign lesion/tumor. He also said that due to its location it is not likely to change any of my gross/fine motor skills, vision, hearing,balance, or ability to speak.Truth be told, he said that he could remove a large area of the brain where the tumor is to no ill effect on me. But this all depends on what he actually finds when he cuts me open. For now, I can continue to work under careful observation. No driving, no ladders, ect. but simple stuff.