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