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March 3, 2010 1:29 PM

Letter from my brother-in-law

This is the doctor that did some consulting during my early treatment. He and my sister visited me during my week in the hospital; it was great. Here's a picture of him on the right. 

Hi Ali,

Let me first deal with the practical and then come to the abstract.

Radiation may slow down the stuff in the chest but you are right, the cost is burning dysesthesia and possibly worsening swallowing ability.  If you take this you may want to consider a feeding tube which would have to be placed surgically because you need your strength. Chemo is the answer as it is systemic (disease and treatment); but you know the cost, and it is trial and error ( a calculated guess)  to find one that has some effect on the tumor. (It is something I am reconsidering given the help I now have.)

ENT is to inject the vocal cord with a teflon substance to bring it back to the midline so that the other vocal cord can work better and your speech will be better.  Take care, because your nerve which is likely damaged by tumor recurrence and is the likely cause of your poor voice, controls also the swallowing reflex in the neck, and  if you drink thin liquids this can lead to aspiration if you are not careful.  The ENT procedure is simply to help improve your voice but it has no effect on the tumor.

And now the abstract:

Continue reading Letter from my brother-in-law.
Posted by Alston on March 3, 2010 1:29 PM | No Comments | No TrackBacks

March 2, 2010 1:13 PM

Letter from my sister

Keep in mind that until November I would hear from this sister (not the one that most people know) about once a month. I hadn't heard from her since the fall for some reason. And as you know, the expression of raw emotion doesn't happen in my family, so this is a significant departure from the norm.

This (authorized) letter is so beautiful to me. I knew she loved me, but this...

Hi Ali,

I came to the computer to check the time because I needed to replace the batteries in a clock and set the time.  That is when I saw that you had written.  Immediately I had a sick feeling in my stomach and was overtaken by panic and fear but knew I had to open the e-mail.

I am at a loss for words.  My stomach is killing me and I am feeling queasy and shaking with tears in my eyes. (forgive me for complaining about pain.  I shouldn't considering what you are going through).  I had no idea.  I could have called you and e-mailed to find out, but I was afraid.  I kept hoping and praying that everything was going to be all right and that no news is good news.  What a coward I am.

I feel better knowing that you are not alone in your time of need.  I knew you had good friends and in a way I did not worry as much, but nevertheless I always did.  I am not very good at expressing my thoughts and feelings.   Forget about proper grammar, I think you know what I am trying to say.

If I could change your situation and makes things better (eradicating this cancer from your body), I would have done it the first time I learned of your diagnosis.

I have not given up.  I will continue to say prayers.  I do hope you are not suffering too much.

Ali, please let me know what I can do to help.

I very rarely use the word love because I feel that it is so overused without any thought to the true meaning.  Please know that I love you very much (emphasis mine) and please let me know if there is anything I can do to help.

The tears are flowing freely now.

Love always,

Allison
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Posted by Alston on March 2, 2010 1:13 PM | 1 Comment | No TrackBacks

March 2, 2010 8:22 AM

My relationship with chocolate ice cream

I have a silly little confession from childhood. Sometimes we would travel to the Dairy Queen outside town as a family and have ice cream. It was always a good time. I enjoyed everything about it; the weather, the picnic tables, the location, the smells. I don't remember what anyone got other than me and my sister. She always ordered chocolate. I always ordered vanilla. ALWAYS.

Somehow, I developed this racial guilt over it. By this time I had already felt the sting of racism, both overtly and covertly. I knew that any sort of real protection had to come from us. And I figured that that included supporting things that were perceived as black. It made sense that my sister would prefer chocolate ice cream, but although it wasn't bad, I always found it bittersweet and tasty, while vanilla was just sweet and tasty. And I felt a tinge of selfishness and shame. I felt the same way about Girl Guide cookies. 

I got over this when I discovered strawberry ice cream, and then tiger-tail. I think I tried those because I was sick of the racial guilt. It was probably close to a decade before I had vanilla ice cream again, and by then I felt nothing about it. I mean, white people could have chocolate ice cream with no issues right? (I could make a white privilege argument there, but I will refrain). And over the years my feeling about the taste of chocolate ice cream hasn't really changed. 

Now I will sit down with my tea-with-milk, and two Golden Oreos.
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Posted by Alston on March 2, 2010 8:22 AM | 5 Comments | No TrackBacks

February 28, 2010 2:29 AM

Some plans

I spoke to the PCU (palliative care unit) people on Friday, and the doctor gave me some decent news. They can perform a pain blocking procedure that will hopefully block most of the pain coming from the abdomen. This means fewer opioid-based pain pills, which means less constipation, which cuts the vicious circle somewhat.

I think I also mentioned losing my voice. I have two options. The first involves radiation. The good thing about that is that it may control the local tumours in my neck as well as give me back my voice eventually, but the risk is in soreness and burning, which would make eating far less appealing. I am not especially worried about this, though. The second option is to make a visit with the ENT, or ears-nose-throat people. I don't know much about what they do except that there may be botox applied to my vocal cords. BOTOX.

Certain things don't change, though. I am still very weak. I have had an active week, and it caught up with me today. I was in no pain, but I was on my back all afternoon. During this time I didn't eat enough. When it was time for Sujerin and I to leave to watch Shutter Island (decent flick, BTW), it had been about 4.5 hours since eating. I ate at the theatre and decided on a poutine. Not the best choice, but I wasn't thinking clearly and the choices weren't stellar, either. I was actually close to tears for the guilt and anticipated problems I was going to have. Sure enough, halfway through I had a stomach crisis so severe that I left my seat and slumped on the floor against the wall near the entrance breathing heavily for 20 minutes. This is the type of pain that cannot be controlled by pills; it's major, but brief. I knew it would pass.

I am having problems with my bed as well, and don't know if I can sleep in it. I'll try again now after letting the Boost I just had settle down in about 30 minutes.*

*I know that consuming beverages now isn't the smartest thing, but I have to respond to my body when it says that I need nutrients, no matter when that is.
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Posted by Alston on February 28, 2010 2:29 AM | 2 Comments | No TrackBacks

February 2, 2010 2:08 AM

Facing my Self

*WARNING* This entry is going to reveal some rather raw thoughts, and hopefully even a little emotion about how I really feel about myself as well as other people. They will offend some people, and I don't really know what to do about that other then apologize in advance. I am trying to change certain things, and will leave other things alone as I see fit. But I am laying some things bare right now. It's also a LONG entry.

I.

It started when I was on the river this past summer.

The trip was organized by Youth Dynamics Adventures, the expedition wing of Youth Dynamics ministries, therefore both the film crew and the guides were all young Christian Americans. However, they were not at all like the negative image that American Christians have in the media (particularly their older versions). These people were extremely supportive, positive, upbeat and not particularly proselytizing. Besides Mike and Bonnie Lang, the trip organizers, there was one guide in particular that really affected me.

Continue reading Facing my Self.
Posted by Alston on February 2, 2010 2:08 AM | 16 Comments | No TrackBacks

January 6, 2010 11:50 AM

Colonial mentality and me

I just finished reading a short article about colonial mentality in the Philippines and Latin America. Here's a passage:

The biased favouritism responsible for their overwhelming presence in film and television is deeply rooted on established Filipino "Ideals of Beauty" that are determine based on the possession of at least partial European ancestry, an ideal that stems from colonial concepts first introduced by over 300 years of Spanish colonial rule, then by a further generation of Anglo-American occupation.

I learned fairly early on a few things about my own ancestry compared to those of my peers that mainly revolved around limited access to information. First, I assumed that I was descended from slaves, and therefore any documentation about them would likely be non-existent; essentially limited to how much my parents knew about their own families. Second, it was obvious (to a young me) that I had some recent white ancestors (I'll post pics of my mother and brother at some point), so if I wanted any information beyond 2-3 generations, I would find it on that side. As a result, in later years, I believed that this, as well as with other reasons that deserve their own post, resulted in me placing slightly more value in my white ancestry than my black ancestry: I assumed that I would have more information about myself through them.
Continue reading Colonial mentality and me.
Posted by Alston on January 6, 2010 11:50 AM | 2 Comments | No TrackBacks

January 4, 2010 11:41 PM

Pulling your hair out

...is more fun than you would think.
Hairless redux 1Hairless redux 2

Posted by Alston on January 4, 2010 11:41 PM | No Comments | No TrackBacks

January 1, 2010 10:23 AM

Hope

On this first day of 2010, it seems appropriate to first review 2009. Let us begin.

I started the year waiting around for doctors and staff to return from their holidays so that I could get a PET scan scheduled. My chemotherapy had failed, and we were considering other options. This waiting period would last until March, when I finally did 2 weeks of radiation for the first time. I also started acupuncture soon afterwards. Both of these things made me feel physically good for a good number of months. 

When I returned to work in April, I had absolutely nothing to do. Any project that I had been working on had be restaffed, and the company had not signed any news contracts this year. (Apparently that wouldn't happen until September.) I basically twiddled my thumbs for 2 months, and pretty much asked for a mutually beneficial release. I got my wish on June 10. 

I then spent the next month doing work for the Cedars Cancer Institute, and then I filmed a documentary which I have spoken extensively about.

And part of this year was spent facing death in other young adults with cancer.

Continue reading Hope.
Posted by Alston on January 1, 2010 10:23 AM | 9 Comments | 1 TrackBack
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