Yesterday I received the pathology report by phone.

About 4:30 PM PST I received a call from my primary care physician Dr. Robert C. Hayes. I knew right  away that this was not normal. I’ve never received a call from him personally dr-hayesin the 4-5 years that I’ve been seeing him. Usually it’s just a nurse or a receptionist. I could tell in his voice that he was very concerned, but he didn’t beat around the bush at all. “The pathology came back, its been verified by 2 pathologists, and is being sent to the Mayo Clinic for further testing, but you have a Glioblastoma, and I don’t want you to wait around for 3-4 weeks for confirmation. You need to get on this RIGHT AWAY” he continued on that “I have had several patients that have lived for 3-5 years with this condition.” He noted that most do not survive this long, but he said that I’m otherwise healthy, and I’m right at the age where under 50 means longer survival, and over 50 decreases life expectancy. I was diagnosed on October 8th, my 50th birthday!

All things being equal, median life expectancy with out treatment is about 6 months, with treatment, which consists of surgery, radiation and chemotherapy, is 14.5 months. Median survival rate is defined as 1/2 of patients living longer, and 1/2 of patients living shorter lives. I have also noted that in my MRI-Spec that there is a necrotic center  mass in the tumor, and that is a major factor in a shorter life span. That is, in fact, the difference between a Grade III and a Grade IV. Often Grade III will return as a Grade IV in a much more aggressive fashion, but mine is already a Grade IV, so I’m not sure what to make of that.

You may ask yourself “Why is brain cancer so resistant to treatment, while other forms of cancer are making huge strides in life spans?” Many brain tumors are not considered for surgery(de bulking) due to their location in the brain. A benign tumor in one location in the brain, becomes malignant if it is in an “eloquent” area of the brain. An eloquent area of the brain is defined as an area that controls movement, thought, personality, gross and fine motor skills, or memory among other things. Thus surgically removing or de bulking a tumor may relieve symptoms temporarily, a Glioma will usually return because complete removal is not possible. Microscopic cancer cells are always left behind. Thus you have the need for radiation and chemotherapy.Radiation will kill many of the remaining cells, but only chemotherapy can kill all of the remaining cells. This is where things get complicated even further. Glioblastoma tumors a made up of mixed cell types. Every Glioma tumor is comprised of different concentrations of these different cells. Different types of cancer blood-brain-barrier-ppt-7-638cells are killed by different types of chemotherapy drugs. The last, and most devastating issue, is what occurs in the brain itself as a naturally occurring defense mechanism. This mechanism protects the brain from viral and bacterial infection. This is known as the Blood-Brain-Barrier. It also serves to block most or all of the effective chemotherapy drugs, leaving only a few types of drugs that can cross this barrier. There are drugs that are being researched that try to open up this blood brain barrier, but the are very few and far between. Brain cancer research is only allotted a small fraction of cancer research due to the small number of people diagnosed with this condition each year. 78,000 people are diagnosed with brain tumors each year with nearly 17,000 dying each year. There are approximately 700,000 people in the USA living with one form or another of brain tumors…..

I’m not one to ask for help. I have worked since I was 15 years old. But if you can find it in your heart to donate….any amount helps…..

~Rob

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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