My mother wanted children right away when she got married and had all four of her children as close together as she could. When her oldest was born (my older sister) she and my dad learned that it was necessary for her to have her by way of Cesarean section. This turned out to be the case with all of her children. I reflect back to the time in recent months when I had a teeny tiny abdominal insision for my vp shunt installation and how it immobilized me (in my smallish mind at the time - hah! I made a funny) and then having my mother tell me that after giving birth to us she would have to strain under great diress just to do things like pick us up and feed us. And here I was complaining about how to turn myself over in bed or pull myself out of bed just to use the bathroom. Multiply that by 5 for the length of the insicision (this was back in the 70’s before newer procedures have likely helped this) and then that by 4 for the number of children she had. My understanding is that she almost defied her doctor’s order in order to have my youngest sibling but I could be wrong. She wanted more than 4 children.

Now having gone through that, I have a very profound insight to what a parent (especially  a mother) goes through when a child is at risk for health concerns. Already having suffered much sickness, pain, and sorrow in giving birth to a healthy baby boy, that concern of a good mother can last a lifetime. Feeling powerless to do something about a strange health concern such as a brain tumor and leaving it to the hands of medical professionals is not an easy thing to do, and it hasn’t been for my mother.

During my first surgery 5 years ago she turned to the Lord in many respects and found strength in learning what was in store for our family as we discovered this new challenge. I still remember getting home from the hospital 5 years ago and in our own home finally learning to live with the results of a strange and new living condition. I hadn’t had a shower so I took one. Not really knowing what to do with my head because of the wound on top of it, I did the best I could to wash it. I couldn’t bring myself to touch my wound because for one, it hurt like the dickens, and two I didn’t want to mess with it.

After coming out from my shower and putting on clean clothes, she spent an additional 10-15 minutes combing my hair and pulling dried pieces of blood out of my hair…almost as if she was helping pick the broken pieces of my sickness out of my body. It was very symbolic looking back at it now. In younger years, applying first aid to a scrape, and in later years listening and responding in only the way a mother could has been a strong suit of my mother. We’ve had our differences, but her constancy and resolve to do the best thing possible for my well-being has been such a blessing.

Growing up, my mother did her best to be frugal with what we had, and she learned to cut hair. Her first attempts weren’t likely the best, but hey it was a free haircut. Tonight after honoring mom, dishes were done, and grandkids attended to, she willingly relented to give me a haircut just to get the hair off my ears and neck. (I like short hair) She has been a little out of practice but she did a great job. I still haven’t decided if I will get the rest of my head cut any shorter. For one, I want to know where I need to rogaine, and two, I don’t know what it would be like to go into a barber shop and not scare away their customers when they see how bad my radiation side-effected scalp looks. I may get brave this week and get the strangest crew cut of my life. I’ll be sure to get a picture before and after. I just need to find the right haircutting place.

Anyway, where would we be without our mothers, for good or for worse?

But, I am back at work half-time, which I’m grateful for, I’ve been able to meet the demands of my job (albeit, I picked a slow time of year to return), and I’m enjoying having some productive things to do that I enjoy doing. Plus I’m applying my daily doses of rogaine, so we’ll see where that leads. Trust me. I need it. There’s one thing to be said about bad haircuts. Getting one by mistake is one thing, but getting one out of necessity or unavoidability is something else. I’m not sure which is worse, but my head looks like I had a really accurate bad haircut. I’m almost afraid to go to my barber out of fear of scaring the other customers away.

Spending time with family and friends has been great too. I’ve been counting the blessings lately, and know I can do better as a friend in some areas. It’s always good to have goals. One mine now is to put together a reflection of my "before time", and compare it with how I’m feeling now. I think I’ll get started on that soon…

It sort of sounds cool, but really all it means is I did what I was told to do. I’ve not much work to do yet since returning to my job part time so I’d thought I’d add to the blog and talk about radiation therapy. There was great consultation about what the experience would be like, and for the most part it was true. One of the missing parts was the percieved tiredness or fatigue. Thankfully it never manifested itself all the time. Only a couple of days did I feel the need to sleep after a treatment or later on in the afternoon. However, one of the side effects that has come true is hair loss. I’ll post a picture of my really bad haircut soon, but on a positive note, my radio-oncologist told me that rogaine (actually minoxodil) works well for radiation hair loss. So I now rogaine my bald spots twice a day. He said this merely jumpstarts the natural re-growth that would normally occur 2-3 months out from the treatment in my case.

Other than that, all I had to do was travel to the hospital every weekday, check in and wait for them to call my name. Then I would lie on the gantry table, and they would put my radiation mask on. All that’s required to do is keep my head in place so I get the exact same treatment every time. Here’s a few pictures of what it was like my last day:

And of course when you are all strapped in, you can’t get yourself out. So what do the techs do on my last day? They take my camera and start taking pictures of random things…everything except for themselves of course.

Goofballs…geez!

With that said, I must say I’m overwhelmed with the support I’ve received from people, both here at work and in church and with family/friends. Often times I don’t feel like I deserve it. There are others out there with more needs than I. Here I sit in my workspace filled with plenty of room and surrounded by good people, and there are people out there that we pass by every day who hide their issues (and for good reasons), but still would appreciate a message or two such as "It’s good to see you", or "we/I have been concerned for you and want to know what I/we can do for you." Plus, with the economy the way that it is, there are many who don’t have an environment at all to come to daily where they can interact with people in general.

My last two radiation appointments are today and tomorrow. I already have had the appointment for today and it was no different except for a meeting with the radiologist/oncologist who informed me that I could jumpstart my hair re-growth with rogaine. So after work I’m off to the store to get myself started on that.

Cheers

A looong while ago, I made reference to something I coined "steroids for thinkers." In my view and opinions, the human mind is a special muscle for our bodies. It isn’t responsible for tactile or gross movement of limbs. It may tell other organs that they should do what they do, but ultimately it is the specific muscle that does the movement. Likewise the autonomous functions (respiratory, digestive, etc.) depend on the central nervous system to do what they do.

What I’m referring to here is a ‘muscle’ that’s by design the gateway into all our experiences, and dedicated to absorbing anything it possibly can.

If you’ve been reading, my brain’s a little broken right now. There have been improvements over the last 2-3 months, but I’m most interested in getting myself back to where I felt I was in December 2008…and quite possibly before that.

Brain tumors depending on where they are located affect the individuals they’ve become part of in different ways. My particular tumor was invasive-meaning that bad tumor cells (although benign) were occupying the space needed by normal cells. They were integrated so to speak in a way that the treatment was total gross resection of the tumor material and some of the good tissue around it. What was left is a tumor bed which is literally a large hole in the vastness of space in my skull.

During the time in my recovery, I’ve noticed that my personality (including behavior) isn’t 100% how I’d like it to be. I can still operate a computer, type, exercise, interact with people, find humorous situations, and spend time with those I care about. However, I’d like to be able to address the issues of learning on a personal level since I’ve declared myself a life-long learner and I’ve got lots more to do.

At least one reader made a comment a while ago about some personal views of one of my favorite educationists and took time to correct me in my abilities to convey his original thinking. I must reiterate that my intentions at the time were based on the information I had available to me at the time and the amount of time I had to put it together. My assertions were also based on my previous recovery 5 years ago of my ability to perform work and academic tasks at hand based on my certain academic discipline and subject area. Therefore I have no scientific proof for my views, other than it be my personal experience only. Wouldn’t it be nice if a formal study of such work could be done and made available? Well, maybe for a later time.

Tomorrow I get to visit my doctor who is serving as my neuro-rehab specialist for an initial consultation. I’m very interested in the types amd methods going to be used to help me get back to my former self. The prevous neuro-psyche evaluation a couple of months ago was enlightening to say the least. I scored high on some batteries of tests, but not as high as the staff would have liked based on someone my age who has not had brain damage. The specific area I didn’t do as well as they thought I could have was putting things in contextual order. (Truly that test was interesting and very challenging at the time) One of the areas they suggested as a form of therapy was speech or language. The justification or reasoning was because it can help with that contextual order deficit or whatever they wish to call it. In hindsight/retrospect, if I had the time and methods to go back to that conversation I would have been to retort to the doctors, "Backwards but talk don’t I!"

Alas, the seriousness of the situation probably wouldn’t have allowed for it. Ever since my first resection 5 years ago and subsequent recovery, my speech has never felt better so I’m interested to see what will come of it. I’ll post on the progress as the therapies are laid out.

Anyway this is the last link in letting me return to my normal self, I suppose. So I’ll let everyone know how it all turns out.

I woke up at my usual time this morning to get ready to go to the hospital for my daily radiation treatment. Getting "zapped" (my joke word with the radiology techs) on a regular basis hasn’t really been enlightening or draining me either way. It just seems part of life. I checked my phone messages this morning to see I had missed a call from my radiology techs saying their machine was down for the day so I could reschedule the appointment for a different day. I chose to have the day off like lots of others get Good Friday off, so I’ve been running around town running errands. FYI, yesterday it was confirmed with me by the radiologist that I only have 11 treatments left. Am I that done already? I guess so. For readers who consider themselves religious or at least rely on a higher power might consider this next bit interesting…One casual reader happened to be browsing the blog (you know who you are) and contacted me about a photograph I took 2 years ago about this time:

And yes, this post is a plug for the event, but also a congratulations on a great article (in which I’m quoted) summing up what has been coinciding with my life for the past 3-4 weeks in addition to all the recovering:

http://www.ldsmag.com/churchupdate/090410mesa.html

Now, I’m not a professional magazine article reviewer by any means so all I can say is thanks to the author for contacting me and providing another venue in which this part of my life can be shared. Some blogs by nature are a bit on the "hey look at me" side. I’m trying not to be narcissistic, here, but any blogger who may be new to the idea of blogging all of a sudden has to wonder "how can I make this content that I’m writing interesting enough that people actually wish want to read what I have to say?" My intent has merely to inform interested parties of what I’ve been up to, and do so in a dignified way that is impartial to any one way of thinking. Having said that, if you as my reader aren’t religious, I certainly can respect that. However, I do feel compelled to say that I believe in God, and I know that he is my father in heaven. I also know that His son is Jesus Christ who came into the world 2000 years ago and actually did and said the things recorded about him in the New Testament in the Bible. Despite my shortcomings, as I try to pattern my life around His example and accept his perfect sacrifice for me and all people, I know I can have peace in this life and in the next. That is what the Mesa Easter Pageant is about. It’s not meant to be preachy, but I firmly believe that those who attend with an open heart and mind will feel better about life after they’ve attended. No further action upon that individual is necessary. I’m not an official spokesperson for the Easter Pageant, but I will say that the purpose of this community event is to teach willing hearts and minds about the mission of Jesus Christ who invites all to "Come unto Him." The means and method of how all of us respond to that invitation is purely up to us. Those who attend may be approached by specific invitations to learn more. You have the option of politely declining that invitation, however I promise you that if your heart and mind has been touched by our performance and you accept that invitation then you can have that feeling with you for a lot longer than just an evening of community religious outreach.

So however you celebrate Good Friday, whether it be a day off work or spent doing other things, please note that it truly has been one for me…and with a whole different meaning this time around.

Happy Easter too, while I’m at it!

As far as side effects are concerned, my scalp is red and a bit dry. I’ve lost only a little patch of hair around my incision which the radiologist says will likely grow back in time because "I’m so young." I’m not too worried because it could be much worse.

On another note, the first week of my participation in the Mesa Easter Pageant performances have gone off without a hitch. Even though we are "acting" under a pre-recorded sound track, the presentation has a feeling about it for me that gives me a bit of hope and peace each night. We just got done with the performances in Spanish this past Saturday and even those nights I’ve been strengthened. If you are reading this and are local to the Phoenix Valley, give us a visit. It’s free, for one thing, and it’s a perfect reminder of what Easter is really for. So if you and the family want a great night out, come on down. We’d love to have you.

I’d like to describe my experience thus far with radiation therapy uneventful. I should reiterate here just in case people are wondering…I don’t have cancer. I had a generally benign brain tumor resected that has potential for regrowth so they are radiating the tumor bed to prevent possible remaining tumor cells from dividing and causing a resurgence of growth. That’s all. I’ll repeat in case there’s confusion: I DON’T HAVE CANCER. (At least not now). If you’ve been following the blog, my neuro-oncologist said I’m not a candidate for chemotherapy. I’ve been telling several people, including friends and family members that I almost feel guilty about "averting" chemotherapy in light of the revelations I’ve had with another friend with whom i had lunch a week ago. She’s been receiving chemo for a different type of disease. During lunch she seemed happy in general but I could tell it was taking its toll on her emotionally. Having already lost all her hair and imposing diet restrictions on fresh foods made me reflect on how difficult life can be for some people. My friend and I share at least one thing in common. For the time being we both had to stop working and move home with our parents during our ordeals. But we both reflected on how wonderful it is to have family so close and that there are many people in the world who don’t have that blessing to be able to come home and recuperate. There are many cancer patients who have to go it alone, and many bravely do in their own right. In my view they aren’t really alone even though they may feel such.

On that note, let me reflect on my own parents for a bit…I’m the direct product physically and spiritually of them in so many ways. Being the son of an engineer father, and an educator mother has literally turned me into an educating engineer. (For work I help engineer software that helps people learn and in turn I get to learn from the people or ‘clientele’ of the college I work for of their expertise and educational backgrounds as they describe what and how they want to teach using technologies I recommend or build for them). What I’m saying is without the influence of my parents I would NOT be who I am today and for that I’m grateful. For those who are reading who feel that they have or had less than ideal parents, I can’t offer much other than the view quoted here:

On Children
 Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let our bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

So with today being Friday I’m glad the first week of radiation went off without a hitch. The staff at St. Joseph’s radiation oncology treatment center has been very cheerful and I already feel like a regular. One week down, and 5 more to go. I try to imagine all the other patients they see each day for whatever reason and how this is something they try and make a highlight of the patients’ lives–that they are doing something that is hopefully going to make them better. Thats the point of it all, anyway, right?

In my humble opinion, exercise is a weapon against depression and discouragement. Now if you can combine exercise with nature, you have two therapies in one: fresh air, and blood flow to your thinking organ. This can produce endorphins that help you out of thinking patterns that can end up being rather selfish if you don’t keep them in check.

Last week I had the opportunity for a brief hike in the Phoenix South Mountain park. The friend that suggested it in the first place was one of the surprise visitors in the hospital when I was in the ICU. Back then I wasn’t coherent enough to know when I thought I would be ready and only as of late had my ability to take up the offer for the hike magically "reappear." So we went and I took a photo to prove it:

• Radiation, while very effective for treating people in my condition, has side effects such as fatigue and more notably for me personally: hair loss. I’ve been blessed (thus far) without the side of my family’s gene pool for male pattern baldness occurring earlier in my young adult life. While I’m not particularly vain about my head of hair, I never once considered it would take disease treatment to make me lose it (or parts of it). So I’m going to have to learn to live somewhat without hair. I’ve yet to decide what to do: go entirely bald or just wait and see what the "fallout" area looks like once the side effect of hair loss becomes a factor and deal with it then.

Also on a side note, I had been anticipating participating in my church’s annual Easter Pageant. It’s the largest outdoor easter pageant in the world according to the website: http://www.easterpageant.org/. At any rate, the fatigue factor, rehearsals and performances, and the timing of my daily treatments (which are to be as consecutive as possible) may limit my ability to play my small part. I sure hope not! I’ll keep everyone updated.

What is sort of cool about the consutation appointment yesterday is they formed the head-mask they use for reference on where to aim the energy beams. It’s also to keep my head stationary while I’m strapped to the equipment that delivers the treatment. Word has it that I get to keep this once my rounds of therapy are over. I’m not sure what I’m going to do with it yet…anyway here’s a picture of it: