1 Year Down

The most common length of survival following diagnosis is 12 to 15 months, with fewer than 3% to 5% of people surviving longer than five years.

Advertisements

On October 9th, 2016 I had my first seizure. To begin with I was putting on a brave face for quite some time. I was unsure what was going to happen to me, my wife, our house and the cars. Nevada is a “community property” state. This means that anything I bought, as in both my cars, go to Karen automatically. The issue I had was that when we bought our house, Karen signed off her “community property” rights, listing me as sole owner. At the time Karen’s credit was not so good, so we just put it in my name. In most cases it is difficult to add another person to a property deed. If I were to change the deed to add her with out the bank knowing they could very likely call the entire mortgage due at once. But after much research, I found what is called a “Transfer On Death” or TOD deed. So my deed is still in my name only, and when I pass on, it will automatically transfer to her.

The first 6 months I was in and out of the hospital 4-5 times, because I was still having seizures. It took a while to get my seizure medication and steroids to therapeutic levels. After the Oncologist tried to taper my steroids, used to reduce brain swelling from the radiation, I began to have more seizures. Later, after putting me back on a higher dose of steroids, the seizures stopped, and then he began to tapper at a slower rate. Today I no longer take steroids, which is good because they have terrible long-term side effects, and Keppra to control my seizure. I have been seizure free since April 10th 2017.

As far as imaging(MRI,CT Scans) goes, my remaining tumor continues to shrink. Originally the Oncologist said he was going to stop a 8 rounds of chemo because he assumed  that chemo had done all it could do to shrink my tumor and I was doing so well, but after seeing my last MRI, he decided to add a few more rounds because it was still shrinking. That was October 4th.

I still have symptoms/side effects from the medication and brain surgery in general. Because the tumor was on my left side, the right side of my body is weak. I fall occasionally , bounce off walls and I have lost almost all muscle tone on both sides of my body, but especially the right side because the left side of the brain controls the right side of the body. I tire very easily, and I still have hand tremors.

Many GBM IV are considered in-operable. As you can see in the MRI, I was lucky to have

Tumor
My Tumor

it positioned at the very top of my skull, making “de-bulking” i.e. Surgery, pretty straight forward. The most common length of survival following diagnosis is 12 to 15 months, with fewer than 3% to 5% of people surviving longer than five years. Only time will tell….1 year ago, on 11/28/2016 , I had my surgery and I have recovered very well.

My Neurologist and my Oncologist both gave me the green light to drive again, just not at night, and not in areas of high traffic.  That is such great news. Now I can get up and go where I want to. Nevada law is 90 days seizure free, and I did 6 months before I was allowed to drive again.

We would also like to thank EVERYONE who supported us financially, spiritually and emotionally. We would not have been able to make it through this with out all of you support! Having friends, family and even strangers donate meant the world to us!

ThankYou all!!!

~Rob & Karen

 

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