First Week Back at Work

Well, finished my first week back at work. Things have changed somewhat and I’m getting back into things albeit slowly. So far, it’s gone okay, although I will have some catching up to do. All my co-workers have been great in welcoming me back and have been really accommodating of which I am grateful for. As my company moved to a brand new location during my leave of absence, I had to unpack my things. Before doing this, one of my bosses took me around to reacquaint myself with everyone and to meet my new colleagues. It did feel like being a new employee.

For the most part, it was okay. As I expected, my concentration and focus has not returned to where they were. Again, it was expected, but still disappointing nonetheless. Also, on Tuesday and Wednesday, my simple partial seizures picked up again after several days of them being kept in check. The seizure activity towards the end of the day, especially on Wednesday, kind of put me out of it. I’m not sure what the cause for the breakthroughs might be. I don’t think I’ve been overexerting myself, but who knows with the brain, it is much too complex for me. It had been going relatively okay the several days before Tuesday regarding the seizures, but it seems like another breakthrough *sigh* Thursday and Friday were a bit better in that my simple partial seizures did not completely take me out of it, but just the simple fact they were there was disappointing. I may have to cut back my hours a bit and try to find that balance.

On Tuesday, I realized that it was basically this week a year ago when everything all started (i.e., the body aches, then stomach and headaches, then headaches, then ER, then CT scan, then MRI, then tumor discovery) and today marks my one year tumorversary. Hoping this year will be better than last...

MRI Results

Got my 3-month MRI scan today and also had the follow-up with Dr. Lai. The good news is that today’s MRI compared to the one from October, shows a slight shrinkage of the remaining tumor. This is a good sign because radiation doesn’t always result in shrinkage of the tumor, and if it does, it normally takes awhile ( at least 2-3 months normally). So, suffice to say, I was pretty happy to see this.

On the downside, Dr. Lai has again increased my Keppra dosage up to 3,000 mg from 2,500 mg due to my continued issues with simple mini-partial seizures. He also wanted me to switch to the actual Keppra brand from the generic brand (leviteracetam) I have been using to see if it will make a difference. He stated that the actual Keppra brand is normally more accurate in terms of the dosage and would help in ruling out possibly increasing to an even higher dosage. However, this plan to switch to the Keppra brand name was nixed as I recently just had my prescription refilled and have to wait for another 2.5 weeks before I can refill the prescription again. It is disappointing because the plan originally was to try the new 3,000 mg regimen with the Keppra brand for two weeks and check in with Dr. Lai to see if it makes any difference. However, I will go ahead with the 3,000 mg regimen using the generic Keppra prescription that I have.

It took awhile for my body to adjust to the 2,500 mg initially, but once it did after a few weeks, the frequency of seizures went down dramatically starting around mid-December, from 5-8 per day to 5-8 per week. However, for the past two weeks, my seizure activity has increased again and has gone back to about 3-5 episodes per day. I think it might be due to my Keppra prescription turning bad. It had this weird smell emanating from it unlike my previous bottles and my current refill. Fortunately, the severity of the episodes hasn’t gotten any worse. Hoping the increase in the dosage will help. If it does not, it will probably increase to 4,000 mg and if that doesn’t work, then I may need to switch to another anti-convulsant and go see a seizure specialist. Dr. Lai stated that there are generally two types of people who have seizures, those who gets prescribed medication and it works the first time and those who may need to figure out exactly what may work for them (i.e., increase in dosage or change in medication). It seems that I may fall into the latter group. Anyways, will see how the next two week goes. Hopefully, returning to work won't be too much either on the brain.

Fitting Into Life...

Poem I came across written by a fellow brain tumor survivor:

 Fitting Into Life...

Do you ever wonder what it's like
to not fit into this life?
You aren't unhealthy but you are sick
yet you aren't able to make your pick

People get to know you... for who you are
without knowing your secrets afar
Do I tell them... or don't I you wonder
Knowing if you do... it's usually a blunder

You decide it best... you think they should know
Since there is nothing physical to show
How do you do it... there's no manual or book
to teach you the right way and not go amuck

"I have this thing... inside of me"
"It doesn't change who I am or want to be"
"It's a tumor up here... inside my head"
"Sometimes it keeps me all day, in my bed"

"Don't be afraid... no... not that look, please no"
"that look that says "oh no... when will you go""
"I don't need you to feel sorry, be mad, or tense"
"I need your understanding, your love and your patience"

"you see... I'm a fighter with a heart for life"
"and ain't no tumor gonna cause me strife"
"so brighten your face with that big ol smile"
"and hold my hand cause I'll need your strength for a while"

Now is the hard part... the part I struggle with
Because until they were told they didn't even know it
Until I told, I was just another friend
Now I'm a patient... who may not mend.

To say I'm a "normal" person would be a lie
I have issues that could cause me to die
This is why I struggle and fight with my might
Because I know not where I fit into this life

Therapy Done

Had my last session on Wednesday. I received these two items as parting gifts. My radiation therapists (Ben, Jess, Ruben, James, and John) were all great and in a way I will miss seeing them on a weekly basis. I joked around with them that this was my 2nd degree from UCLA (my first being a bachelor's in anthropology), but that hopefully I won't earn anymore anytime soon, if ever again.

Last Week of Therapy!

I have only two sessions left set for tomorrow and Wednesday and then my therapy will be over. It has gone by so fast. Am very thankful that the short-term effects have been relatively mild compared to what could have been. Hoping that it will be the same case with the delayed long-term effects.

After my last appointment, my first follow-up appointment with Dr. Selch is scheduled for July 17, about six months from now. It will also include an MRI. This is supposedly a good sign because if it wasn’t, my follow-up appointment would have been scheduled for April, i.e., the 3-month cycle. Normally after treatment, it takes a bit of time to measure how effective the treatment was. If I am lucky, the MRI will show some shrinkage of the tumor. However, I do have an appointment with Dr. Lai at the end of this month along with the 3-month MRI cycle that he has me on.

Being hopeful that the insurance issue between Blue Shield of California and the UC health system will be worked out soon. My continuity of care services applications, which would allow me to continue to receive care up at UCLA from both Dr. Selch and Dr. Lai are currently under review by Blue Shield and I should get a determination sometime this week. All indications show that both applications should be approved, but in the event that they are not, then I will need to go find another neuro-oncologist if Blue Shield and the UC health system do not come to a new agreement soon. So hoping for the best.

Lastly, I am set to return to work on February 6. I will be starting out about 30 hours a week (M-F) to see how it goes. It’s hard to believe that it will have been six months when I return. Seems that a lot has changed since I left (e.g., moved to new office building, new staff have been hired, reorganization of the company after merger) maybe not, maybe the change is just me, or rather my perception, who knows…but this will be another step towards my new normal…

I have 6 sessions of radiation therapy left. This week will be my last full week plus two more days next week. I only had one session scheduled for next week originally, but had to reschedule a session from last week because radiation oncology had some issues with their network.
Overall, things are relatively good I suppose. Been having some issues here and there, but nothing out of the ordinary according to Dr. Selch. About two weeks ago, I started to have some weakness in my left leg. It’s very subtle though noticeable. The typical pattern when it occurs is normally when I get up after having sat for at least 10 to 15 minutes. The weakness is normally noticeable only the first few steps and then disappears. It hasn’t caused me to fall over or lose my balance, which is definitely on the plus side.
The fatigue over the past couple weeks has gotten a tad worse as I’ve found myself sleeping longer and longer. The strange thing is that I've also been having trouble sleeping as well the past week which hasn't helped either. For the past several days, I've found myself sleeping 12 to 13 hours which is rather atypical for me. I think it’s from the radiation treatment as it is in a way re-injuring my brain and therefore causing some swelling. I feel a bit the same way as I did when I was dealing with cranial pressure buildup after the surgery, though that was much much more severe.
Not surprisingly, the frequency of dull headaches has also increased a tad as well. The good news however, is that it’s been manageable with Tylenol when needed and the discomfort associated with the headaches ha remained steady. The sore spots in my head have improved a bit over the last couple of weeks.

Treatment Update

Today marks the halfway point of my treatment. Things have gone well so far and much faster than I expected. There has been some minor things here and there. Last week I started to have some dull headaches, but so far Tylenol is keeping them at bay. Hopefully, steroids won't be needed to keep the brain inflammation in check. Also, I’m starting to develop some sore/sensitive spots on my head, but they are okay right now. Thankfully, fatigue has not been too much of a problem and hopefully won’t be as treatment progresses.