The New Scrawl

Coming June 3, 2010

2010-03-09T05:21:12Z

Wrong Way to Hope, the film I was in. Countdown begins now. Lots of people looking forward to seeing it, not least myself. I am supposed to head to Toronto this weekend to get a preview as well as another interview. I'll let you know more information as I get it.

The latest CT scan and questions

2010-03-08T21:50:29Z

It's another report: the final analysis of the CT scan performed on February 16. I have put the interesting and salient points in bold:

A small, tiny hypodensity in the liver in segment 5 measuring 5 mm, too small to be characterized, however, the parenchyma of the liver is slightly difficult to study due to an early venous phase. Gallbladder, intrahepetic bile ducts are unremarkable.

]]> The patient had a previous surgery with the stomach pulled into the chest, however today we see a large mass occupying the body of the pancreas measuring 6.3 x 4.2 cm with a hypodense center situated anterior to the surgical clips with normal proximal pancreatic duct and dilated distal pancreatic duct, most likely compatible with metastatic lesion to the pancreas or a primary one. The spleen appears homogeneous without focal lesion. The splenic vein is not well opacified on this study and the superior mesenteric vein appears to the left of the artery in keeping intestinal malrotation, however, thrombosis in the proximal part of the portal vein cannot be excluded on this arterial phase study.

Right adrenal, kidneys are unremarkable. The left adrenal appears unremarkable in its upper portion, however, the lower part appears in contact with the pancreatic mass and an invasion cannot be totally excluded.

There is a small amount of free fluid in the pelvis. The fat in the peritoneal cavity is very poor and no evidence of peritoneal carcinomatosis in this study.

Eventration in the anterior abdominal wall at the midline.

Urinary bladder, prostate are unremarkable.

The bone window shows two symmetrical hypodense lesions in the iliac bones, well-defined without evidence of cortical rupture, most likely benign lesions and there is also a small sclerosed lesion in the thhe left iliac adjacent to the sacroiliac joint, correlate with bone scintigraphy if clinically warranted.

Lung bases are unremarkable.

IMPRESSION:

Large pancreatic mass, measures 6.3 x 4.2 cm with distal pancreatic duct dilatation, most likely metastatic lesion to the pancreas.

A hypodense liver lesion is segment 5, to be correlated with an ultrasound study.

The portal vein is not well opacified on this study due to an early venous phase, correlate with a Doppler ultrasound.

First, I need to get a definitive definition of the word "hypodense". I think it has to do with how well a lesion can be seen with IV contrast.

I actually knew about the liver thing for a couple of years, but it never came up again in tests of conversation, so I forgot about it. We already knew about the big news. It would also appear that they can actually see why I have certain stomach problems. While I do not present with many of the symptoms of intestinal malrotation, as the report suggests that I have, I wonder if it can be fixed. Maybe then I could eat more normally and have a better relationship with food. "It's not you, it's me."

Eventration. I believe I have had this since my surgery, if it's what I think it is. I used to ask about it, and no one had any idea what it was. But it's essentially a hernia that no one thought was important. If so, why not?

As for carcinomatosis, they say I don't have it, but they aren't feeling what I am. I suppose if I did have it, my quality of life would be close to zero, but the fact that I can even type this means otherwise. I am doing well, considering everything.

Benign lesions in my bones? I was worried for about 10 minutes during my stay in the hospital that this might spread to the bones, and that that would account for part of what I was feeling. But benign lesions? No one mentioned that. In fact, no one mentioned anything to me other than the pancreatic one. While I understand that this is the main event, it appears to me that there are many potential places this could go even if in a benign way. Why won't anyone just say this to me? Don't they know me by now?

My oncologist seems to have a particularly hard time delivering bad news of any magnitude and seems to go out of his way to avoid it, even when it would obviously be beneficial to the patient. Suj actually saw this play out because he came with me to the hospital last Thursday when I got this report. (I only read it today, because I left it in the young adult cancer room and only picked it up today.) I had to force him to say that I was indeed palliative and that they were no longer looking for a cure. I knew this, but I wanted him to say it. I am pleased that I will be seeing someone at the Jewish soon.

The previous day I went to see the radiation oncologist, whose candour is far superior. When I noted that the medical oncologist actually told me that there were no organs touched on February 1 and that there was a huge mass on the 16th, he scoffed and said that the PET scan analysing doctor just didn't classify it as such, but that it had to have been there for a while. The reason most likely is because the CT scan that accompanies PET scans is a low-quality, less specific one and it is harder to see certain things on it. This makes me wonder what the PET is for; I will have to find out again. The CT on the 16th was essentially the "proper" CT scan, rather than a crap one, and they saw all kinds of details.

I saw the radonc for my voice. We did a little scope through my nose. I said "Ahh" and only one of the vocal cords moved, or something, hence the definitive knowledge that it is paralyzed. He is going to provide me with a little bit of radiation to see if that does anything. He seems hopeful, which means much more coming from him than the other guy. I was fitted with my mesh face-mask mold today, as well as a pre-radiation CT.

I haven't been feeling great since last night, and the pain has just been more or less constant until about 3 hours ago. What happens now is that if I do manage to fall asleep, I wake up after 45-90 minutes. Within 15 seconds, my body feels as though it's regaining its shape after having been crushed. My theory was that I have such a small muscle mass that it can't support my weight or bones very well anymore to the point where lying down is like being crushed by gravity. It's a wild theory, I guess, but it's not like I could just curl up with a book and occupy myself. Sitting, standing, lying down, anything would be quite painful, and the painkillers were of limited effectiveness.

After my CT and fitting, I visited the PCU and the nurse said that she strongly believed that my pancreas is responsible for all of this. From what I read in my report, she may be right. That plus the fact that I smoked a little dope this afternoon when I got home and was able to sleep for nearly 3 hours. I feel pretty good right now. And I only needed a tiny amount of weed and one pill near the beginning! This means that I don't necessarily need a hospital bed in here.

Sorry I won't be waxing eloquent this time. Must be the dope. Speaking of which...

Interruptions in service

2010-03-08T19:07:02Z

I am just letting you know that there will likely be some interruptions in this blog in a sense. It was unavailable for a few hours today because I forgot to renew the domain. I took care of that, but now Movable Type 5 has been released, and I will likely want to upgrade and try different features. This includes template changes, so don't be surprised if the blog looks absolutely horrible in the next several days or weeks.

Letter from my brother-in-law

2010-03-03T18:29:51Z

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:

]]> I believe in both of your concepts of love; and that this is the only thing that matters in life. To love and be loved. To be loved is a gift from above - not earned, bought, or traded for. It is bestowed on an individual by another. We accept lesser forms with the hope that ultimately love will come because we are often too frightened to look beyond the walls we have created to protect ourselves. Love is pure everything and sublime; one is made free by the freedom they surrender to the one they love. But only if it falls on fertile ground. On the other hand to love is a choice and a gift - a gift in that there must be a connection to the other; but a choice to continue to love above all else. So why is this so hard? Why is the ground so hard for the seed to grow?

So Ali you have had to face things we all fear; but you had to do this at an early age - you have matured because you had to develop, or sink into despair like an animal curled around it's pain. It took me a long time to realize the points you have earned by your suffering. There are 2 very important points that I want you to have - I searched for them for a long time until I found them. They are in a way my most important treasures which I offer freely to everyone; however I realize that hearing and seeing is one thing; comprehension that is incorporated into faith- that requires a higher level of vision.

The first point is (and I consciously searched for a long time for this) is where to find wisdom - not science or facts but true wisdom and understanding. No single piece of literature ever stated how to acquire this or even define it. They hinted at it, but only obliquely and their descriptions would lead away rather than to the central truth. Finally I found it in literature. Job 28; and I continue to read and refer to to the point of memorizing the words because of the power it has.

The second comes from the same place and I learned it a long time ago in Latin "Venite ad me, omnes quis laborentes et onerati estes, ego reficiam vos." This is not a hope, but a promise and it comes from God - "Come to me all you who labor and are oppressed, I will make it up to you." This is written with conviction and faith - it is a promise. It is my belief.

Letter from my sister

2010-03-02T18:13:30Z

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

Nooses

2010-03-02T17:33:41Z

As far as I know, nooses haven't been found anywhere in Canada, although there was a recent cross burning in NS. Yet another has been found in the US, in a university library at UCSD.

These nooses are not free expression, they are acts of violence and terror. If something like that were to happen at McGill, my alma mater, I don't know what I would do. It would be devastating. It means that there are people that want to see me dead; they want to kill me. For me, it would mean that nowhere on campus were safe. Thousands of people were actually killed this way, and in worse ways, while onlookers threw parties. I urge you to read the account of the man lynched in the previous link. It is utterly horrifying.

And yet some insist that it's no big deal. Nothing to worry about, just some young cranks trying to provoke people. No. This is at the root of American society. This is what some people think should continue. This is a reaction of a significant sector of society that feels its power threatened and would stop at nothing to preserve it. It is perfectly appropriate for some black students to feel so unsafe that they need to leave the school, either temporarily or permanently, because it is clear that dangerous people do not want them there.

Just try to imagine the savagery required to do this to someone. I'm just talking about the "symbolic" noose hanging in a library, not even an actual lynching, because I can't even get my head about the cross-burning. I can't. Try to imagine what you would feel if you saw this in your workplace. What would you do? I know what I would do. I would demand action immediately. A investigation, questioning, company-wide denouncing of the crime as well as a company-wide meeting (if the company is small enough). There would be counselling and such for anyone too deeply affected and time off as required, so that people feel safe coming to work. I know that this might be what the offender wants, but fuck them.

While I am happy that I am not in the US where this type of thing happens regularly, I have no illusions that there are other similar incidents happening here that are not getting attention. Makes me think of our suppressed Canadian slaveholding history. But I digress...

My relationship with chocolate ice cream

2010-03-02T13:22:39Z

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.

John Furlong embarrassed me

2010-03-01T15:47:57Z

This is a commentary about last night's speech by VANOC head John Furlong. Furlong is a pretty good Canadian by all accounts; an Irish immigrant 30 years ago, and since having a distinguished career in Canadian sport.

But did you actually hear the French in his speech last night? I swear I could have done as good a job in Russian, and I don't even know the Russian alphabet. It was beyond embarrassing. It was painful. I mean, VO TRAY? ("votre"). Did this man practice at all? Was there no one in this budget that could have helped his pronunciation?

Look, I understand that he's a busy guy and doesn't know the language. I won't fault him for being so completely unilingual in his personal life. But do you think that in other officially bilingual countries that his sort of thing would have occurred? Would Switzerland have had a German-speaker with absolutely no knowledge of another other language deliver such important speeches? Of course not. The rest of the world would look at them and wonder what the fuck multilingualism and multiculturalism mean in that country, and why they would promote themselves as such when this representative botches it so completely and thoroughly.

]]> You might wonder why any of this matters. Isn't Quebec just whining again? I'll tell you why it matters. Does anyone remember when Quebec nearly separated 15 years ago? Remember that they cried hypocrisy saying that Canada only cared when it became threatened and that the rest of the time Quebec could go to hell? I think that this exemplifies this idea. Look at it this way: If Quebec were really part of the English Canada thinking by the organizing committee, there would have been much better representation of Quebec in the opening ceremonies and John Furlong would have been coached in how to speak in French. But last night's speech seems less like, "Sorry Quebec, we'll do better this time" and more "You want more French? I got yer French right here" while grabbing a handful of crotch.

But to me, the worst of it was at the very end when he quoted the legendary icon Robert Charlebois (who only two of my anglo friends know) mangled that beyond comprehension, and then immediately followed up with Vive le Canada! To me, that's like quoting a Sinn Fein legend and following up with Rule Brittania. It's beyond clueless. Large magnitude douchery.

It sends a message, and that message is that Quebec isn't really that big a part of Canadian culture. And if that is true, why remain? But that's just my opinion. Today I feel completely embarassed as an anglo-Quebecker. If you really think his speech united Canadians, then you clearly don't understand what it is like to be bicultural here let alone francophone.

Some plans

2010-02-28T07:29:48Z

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.

All right, you Mac heads

2010-02-26T12:35:12Z

Since staying at Suj's I have been unable to connect my PC to his Mac wireless network. In Windows 7, it says that I am connected with no Internet access. We aren't sure which address the router has, but when I ping the usual suspects 192.168.x.1, I get a GENERAL FAILURE. I also tried 10.0.1.1, etc., and got an unreachable host.

The modem is an Airport Extreme. I have already installed its software on my PC to no avail. Now it is reporting a problem and wants to fix itself, but I don't know what to do. Why would I report being connected but there being no Internet access? I may have to get into the firewall, but I wouldn't know how to do that, and neither does Suj.

Cancer marches on

2010-02-24T17:18:35Z

The Friday before last I paid a visit to the palliative care people (PCU) at the MGH. They put me on the regime I mentioned, and in terms of pain it worked perfectly for three whole days. I haven't felt that great since the summer. Last Monday morning (the 15th), they called and asked about constipation. I still hadn't gone in about a week, so we decided that an enema was in order. 4, actually. That afternoon, I bought them and took the first of what was to be four daily enemas. Within 30 minutes, of course, my vacation from suffering was over, and I was in pain from 3:45 pm to 11 am the next day, just in time for the CT scan that the PCU had scheduled for me to see if there wasn't anything else in the abdomen causing me discomfort.

I felt fine again, because my afternoons are typically good. After the scan I sought out the PCU and they suggested I drink Peg-Lyte every day. I started that evening, and naturally didn't feel great. It became so bad, though, that I didn't sleep that evening. Suj (who I was supposed to have lunch with that day) took me to the hospital at noon Wednesday, and when I mentioned my scan from the previous day, he got me the preliminary results within minutes.

Long story short: on January 28, there were a lot of lymph nodes infected with cancer, but no organs. By February 16, my pancreas had a huge mass in it. 5.6 by 4.2 cm. Not even three weeks. When my oncologist found out about it, he was floored. While this is very bad, but does not change my plans in any significant way. I have to get a second opinion from some other docs at another hospital (which could positively affect my financing for a certain off-label treatment I haven't mentioned here yet).

]]> I got back from the hospital Saturday afternoon. Shortly after this, Julie once again stepped up and pulled me out of the mire for a couple of days. And now I will be moving in with Suj and his wife probably today so they can take care of me. I will have full autonomy, but they will be on hand in case I have problems, and also just for day-to-day tasks. I will be keeping my place, so I will have as much access to it as I want, however, if things go well, my niece will move in here on April 1. While I would personally prefer to have my own place, this is probably the best situation all around.

Last Thursday night while I was in hospital, my father called. I had no intention of telling my parents about my situation right then, but he had news of his own. Turns out that Dad also has cancer. Prostate cancer. It's common in men his age, and they caught it fairly early. He's too old for surgery (lucky him, I do not recommend surgery for anyone) and he will probably start radiation in either Kingston or Ottawa next week. He'll be fine I am sure. It's one of the most treatable cancers there is.

There wasn't going to be a better time to tell my parents about my new situation, so I laid it out on the line. They initially were very shocked, but I think they quickly bounced back after I told them that I still had options, such as they are. They need hope, any kind of hope. They can live in complete denial as long as they think that there is any kind of treatment that can help me. I have no need to rain on that, especially since I need this hope as much as they do.

All right. Time to forage for food.

The grace of God?

2010-02-21T16:32:38Z

How can I focus on the present when the present is full of pain? What then, a(n) (un)certain future? Maybe on the good things that are happening, and on those that love me? How do I give away these hardships to someone that can bear them when I am living them every morning and evening?

I am only able to write this because I feel particularly good; I just got out of a 15-hour pain phase. Right now, I can imagine going to the Yulblog 10th anniversary party, possibly in a wheelchair, maybe hopped up on painkillers, but feeling great anyway. I look forward to seeing people in Bixi bikes again all over town, and people buying ice cream outside and walking in parks. It could be my last spring, but thinking about it right now, painless, makes me feel terrific. Is this the grace of God, my earthly reward for seeing things and feeling things differently? What about the rest of the time when I can barely move, or when I thoughts are full of death instead of life? I have to remember that God loves me. I have to remember that.

I'll ponder that later. Right now it seems I need a near-constant source of food, so although I just ate, I must forage again.

The new regime

2010-02-14T14:46:28Z

Let me tell you about the week I had.

Image via Wikipedia

Everything was fine on Monday. Julie was over. I smoked, and had some appetite, and got tired the way I wanted to. And then I had part of this tea, maybe 2-3 small cups, and decided that something was wrong. Stomach didn't feel right. So I went went to bed, and less than an hour later I was in intense gas pain. I tried to take Tylenol and massage the pain away, avoiding Statex for fear of constipation. It didn't work, so I tried taking a hot bath, relaxing my stomach muscles and hopefully alleviating some of the pain. It actually worked, so I was able to get back to sleep and only wake up once or twice.

But the next day was different. I wasn't feeling especially hot that day either, in fact, I had more gas pain throughout the day. I couldn't go outside, and asked Julie to come back. Tylenol seemed to be working less and less, as did any other solution I could come up with such as pot or hot showers/baths. That night, the pain intensified. The hot bath did nothing. I had Julie buy some Gas-X and Imodium, the latter because I couldn't tell exactly what my problem was. It did feel like diarrhea pain, without the end product. When I took the Gas-X, I ended up puking almost immediately while sitting on the toilet. Same thing when I took the Imodium. Luckily, they were the only two times I puked at all.

]]>

The pain went in and out all night. I asked Julie to stay over. Now there is no one that exists that can take care of me that way she can, and without her I don't know what I would have done this week. At times I was sure that someone, probably God, hated me. I felt like I was dying. You wouldn't know it, but she understands a lot of how I feel inside. Between the errands (including getting my lost health card replaced), the baths, the massages, and the listening, there's no one else that could do what she did for me. She just knows what's what.

The pain continued through most of Wednesday, but was tolerable by 3 pm. But at 9 pm, I couldn't take it anymore. I needed relief, so I took 15 mg of Statex. I felt well enough to sleep and only got up 3 times that night. (My ~~dorsal fin~~ spine was killing me.) I took another 10 mg in the morning and went to a breakfast joint to eat. Some of you noticed that I tweeted that I felt absolutely wonderful, and I did. I felt that way all day until around 5:30 pm, and then the pain slowly returned. It wasn't like it was earlier, so I avoided Statex again.

The next day I had an appointment with the palliative care people at the hospital. These are, among other things, world-class pain specialists. By 1 pm I was pretty miserable, hoarse and leaning pretty hard on the cane. The nurse interviewed me, but it was a very compassionate interview. I really felt listened to and understood. She took my information to the doctor before reassuring me that everything would get taken care of quickly. When the doctor came in, he was just as sympathetic to me, but also seemed to speak to me as though he might speak to an equal. I ALWAYS notice and appreciate that. I swear, the palliative people and docs that work in more emotionally sensitive areas are more...emotionally sensitive. He understood my fears about opioid-based pain meds, but said that a real regime of management of symptoms would largely take care of that in not entirely. I'll even be getting a CT scan soon to see if there is anything more specific to the region that they can do for me.

The nurse returned with the full list of meds, and it was daunting. So much so that I bowed my head and covered my face. I could not face this daily list. Why do I feel so worthless and hopeless when I see these things? I felt the same way when my shrink suggested taking meds in passing. (I won't be, at least not yet.) She held my hand for a few seconds allowing me to compose myself, and we continued. She explained each one to me. But at the end of it all, I still needed relief, and since I had brought my Statex with me, she suggested that I take it immediately for breakthrough pain. When I did, I almost immediately felt better, but still tired. I was permitted to nap in the bed for the next hour! And when I got up, it was like a cripple that was healed! I didn't need the cane at all. I was smiling and laughing; it seemed miraculous, and I will allow myself to start thinking that way now.

Here is the daily list of meds.

*At any time I can take 5-10 mg of Statex for breakthrough pain as well as Tylenol.
When	What	Description
Morning	Pantoloc x 1, Lax-A-Day (17g), Senokot x 2, morphine (15 mg), Decadron x 1, Maxeran x 1	Reflux, constipation, pain* (constant diffusion), anti-inflammatory
Noon	Decadron x 1, Maxeran x 1	Anti-inflammatory
Evening	Pantoloc x 1, Maxeran x 1	Reflux, anti-inflammatory
Bedtime	Morphine (15 mg), Senokot x2, Maxeran x 1	Pain* (constant diffusion), constipation

Image via Wikipedia

A few links there to get you started.

I am pleased to tell you that so far, this regime has changed me completely. I am almost back to normal. Well, a tired, slightly sore and underweight normal, but certainly not the writhing pathetic man that you would immediately put down if he were a dog. Still working on that appetite, though, which is probably why I haven't had a normal BM in many days now. Gotta work on that. More food, I suppose.

Facing my Self

2010-02-02T07:08:38Z

*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.

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.

]]> , a brilliant 24-year-old engineer, told the story of his maturation through and in Christ. Kurtis grew up going to things like "Jesus rallies", which I took to be like pep rallies for Jesus that were focused on children. I laughed at him in my mind.

After going through some difficult times at the very end of high school exams, Kurtis decided to immediately leave on a trip around the world. He went to South America, Africa and Asia, I believe; I don't remember where exactly. And it was here that he saw "Jesus in action", as he puts it. He actually saw how Jesus and God move through the world in the lives of real people. You see, up until then, Jesus might as well have been Superman. A cartoon character. Getting together with a bunch of youths yelling "Yay, Jesus!" didn't seem to make much sense anymore. He saw Jesus comforting people in different ways all over the world.

Christians are supposed to emulate Christ, and Christ loved everyone, as opposed to the image that people see in the media all the time where Christians judge everyone instead. And here was THE moment for Kurtis: he became free to love. Free. To LOVE.

What that means is that Kurtis is no longer afraid to show love and compassion to anyone. He has the ability to meet you and be your true friend. There are no barriers to a meaningful connection coming from him. He has cast aside judgment and focuses on the person in front of him, whether they be in need, or just...there. The rest of us, myself in particular, worry about silly things such as image: looking cool, or projecting an air of superiority in some way. Being standoffish or needing to make an impression somehow. If Kurtis were in front of you, you would just feel accepted and taken care of. He would probably attribute that to Jesus Christ, but the fact remains that he had to make a personal journey as a young adult to be able to be that way. I think that he is a genuinely happy person. I say this with no exaggeration: Kurtis is probably one of the most Christ-like people I have ever met. I think he loved us from the start, and that means me.

If I were as free to love as Kurtis is, would I feel better about what is happening to me right now? Would better things be happening right now?

I have been thinking about that day a lot since July, but I have been putting off integrating it into my life, because in order to do so, I would have to give up or change a large part of my identity. Identity is a core part of Christianity, but not in he way that it is for the secular world. For seculars, it's about controlling your destiny and making sure that everything is in terms of YOUYOUYOU. For Christians, it's not at all about you. It's about something bigger than yourself. But in order to do this, you have to be able to express feelings.

II.

Well, fast forward a few months. I started seeing a shrink around November. Last week she wanted to know more about how I felt about certain things, particularly the breakdown I had last month. (I have not written about that, yet.) And I told her what was happening, giving her as accurate a picture as I could. And she kept interrupting me to ask me how I felt. I would go off on these detailed tangents and she would have to bring me back again and again. In the end I barely understood what it was that she wanted from me. Julie had that problem with me as well.

Finally the shrink said something about retreating to the mind when the heart needs to express itself, which is why when shit goes bad, I don't deal with it as well as I could. And I responded with "I hate the truth of what you said." That's what I said to her. And if you go straight to the "heart" of the matter, I think I have contempt for the heart. I look down on it, because I see it as nothing but a fucking whining crybaby that can't get simple things done.

I can't stand the weakness. It's why I used to become nearly crazy whenever a person could not look me in the eye, because it felt (yeah, I know, the irony) that they were too weak to face me. They "felt" something that wasn't actually there. (Now I just avoid those people lest I stab them.) It's part of why I feel so strongly about those who are afraid of math, because it seems as though their fucking FEELINGS ALWAYS get in the goddamn way. (If the tax is 15%, it doesn't matter how the waitress felt that day, Krystal!) I want to think about things, because once the logic of something is exposed, you can more easily deal with it. (It's also fun!) Besides, I have good reason to avoid that stuff: those that live in their hearts seem more likely to be miserable than happy, and less likely to be mentally balanced. They seem more likely to suffer. What's more likely, though, is that they know that they are suffering but can't do anything about it, while people like me don't even know. Until now, I liked my team better.

Ironically, the only reason why I am acknowledging any of this formally is because I cannot deny her logic: I cannot continue this way without letting that stupid inner crybaby express itself through its flailing hands and wild antics.

III.

Yesterday, I took the 165 up the hill to get to the hospital when I noticed a young, bald, black man a little younger than me. He was notable because he wasn't simply bald, but cancer bald. He looked like me in the fall of 2007. So I knew exactly where he was going: Montreal General Hospital, B7. Same as me. And sure enough, when it was time to register, he was right in front of me. And I didn't think of him again after that.

I saw the doctor and got my results. I was faced with a choice: take another dose of intense chemotherapy that is similar to one I already took and that the doctor has little faith in, or focus on quality of life issues. Or end of life issues if you want to look at it that way. I wouldn't blame you. I printed out on application to become a member of Montreal's Compassion Club which includes a form for your doctor and a form for membership. My doc said that he would indeed sign what he needed to sign and so I expect to receive a call from them some time this week. And when I left, walking down the hill, I felt every one of the 317 cancerous nodes* in my body, as well as the back pain, shoulder pain and fatigue.

Halfway down the hill, walking with my cane that I use when my stomach is sore or when I am simply too tired to walk straight, I sensed someone approaching from the back. I assumed they wanted to get by, and was about to make way for them, but the young man came up to me from the right-hand side and started talking to me. It was, of course, the young man from the bus I had seen earlier. And somehow, it didn't surprise me in the least that he should start talking to me right then.

He asked me about my cancer, and I about his. His affected his vocal cords. He was diagnosed about a year ago. He's been through super harsh chemotherapy (because he's young and can take it; we've heard that a million times) and has also had surgery. When he was talking to me, he sounded totally normal. He had had surgery to remove most of the mass, but apparently that's not what restored his voice, because he regained the full use of it three days before his surgery.

We'll call him Francoeur, because that is similar to his actual name. Francoeur is a Catholic, born and raised. He, like so many people, had strayed from the path of the church (or is that, "Church" when referring to the RCs?). In his words, he "wasn't the nicest person" before. which could mean a lot of things, I suppose. He believes that the key to healing is to get in touch with yourself, your feelings, and then to get in touch with your god. Francoeur thinks that God gives us these trials because there is something he wants us to know that is-you guessed it-bigger than ourselves. We need to forge a better relationship with something that is outside of ourselves, even though everything around us tells us to focus only on ourselves, because we are the most important thing in the universe. Even much of Christianity says this. (He even criticizes Catholicism for not doing enough to foster a personal relationship with god, but instead using intermediaries. This is a sentiment I have shared for decades.)

In short, he says that prayer reveals answers, but does not make bad things just go away. I have thought that every cancer has a cure, but the chances of finding it are sometimes astronomically small, or circumstances prevent people from finding and using them. The idea here is that once I reconnect with God, answers might reveal themselves to me, such as the treatments in Toronto that were recently discussed on CTV, or "biologics" to treat esophageal cancer (I need to find out what my surgeon learned from that last week, actually), or...spontaneous remission. Why not think about that possibility, too?

Francoeur and I continued to speak amicably and honestly until he got out at St-Laurent station. When I walked out of the metro at my stop, I walked straighter and with less fatigue. I felt better.

IV.

Since the kayaking trip, and even before that, I have been more closely examining the negative aspects of pride. Pride in our ourselves and our accomplishments. Pride that makes us take credit for things we have no business taking credit for. I have seen how our own individual pride causes suffering to ourselves, and our collective pride causes it to others around the world. This is, of course, closely connected to privilege, which I have examined in both myself and in others extensively for a number of years now.

If pride can be controlled, it seems to me that access to both a wider reality, a greater knowledge of self and real love in the world becomes possible. Put another way, controlling pride is a necessary condition for these things to occur.

As you can see, there appear to be so many things telling me to focus on something else, and to let other things go. And I think that it is as hard to go through as cancer is, but in a completely different way, obviously. I have to change the way I think and feel. Feel and think, rather. I have to invite a larger power into my life. I have to give up illusions of control, because I don't have much. And before you call me out, Mikey, yes, I have been beating around the bush for 2000 words. I am talking about God. And that isn't easy for me to admit.

It's even less easy to do, because I don't really know what to do, really. There are things I have definitely worked on such as recognizing pride and knowing about illusions or fantasies of control. Maybe it means more work on the acceptance and loving of others. Maybe it also means putting certain realizations into action. Maybe it's about allowing the feeling part of me freer reign, and loving it, too. But things are telling me that something has to change lest the worst occur. I want to live, I don't want to die. But if I have to die early, at least let me go knowing what I need to know and feeling what I need to feel. I think you could do much worse than that.

*This is a random exaggerated number I picked out of thin air.

Alston's Nth

2010-02-01T21:35:25Z

Where n is not a nice tiny integer, like 5. No, n is considerably larger than that. Large enough for its exact value to be insignificant. The PET scan that I had on Thursday, January 28 was my NINTH. Yes, I was surprised, too.

Comparison was made with the previous PET scan from November, 2009.

Since the previous study, this patient has been treated with chemotherapy with the last dose given apparently on January 15, 2010.

The current study shows multiple intense hypermetabolic foci scattered in the neck with a predominant involvement of the left upper and left lower regions, as well as in the left supraclavicular zones and less obvious hypermetabolic foci in the right upper neck are also noted.

]]> There is also intense focal increased uptake in the right lower neck and at the beginning of the subclavian vascular pedicles. (Pedicles? What a cute medical word!)

There are also hypermetabolic foci in the right mediastinal prevascular regions and in the right internal mammary. (Like breast cancer? Why didn't my oncologist mention this? Probably because it's no different from the 316 other nodes in the area.)

Below the diaphragmatic level, there is extensive heterogeneous lobulated increased radiotracer uptake close to the midline, probably in the region of the previous gastric surgical bed, as well as there are few contiguous smaller hypermetabolic foci including in the upper retroperitoneal regions.

The rest of the scan shows no evidence of other significant (emphasis mine) hypermetabolic abnormalities.

IMPRESSION:

Very extensive and very intense hypermetabolic abnormalities compatible with active metastatic disease. There has been marked deterioration of the overall appearance of the PET scan as compared to November, 2009, as the previously demonstrated hypermetabolic foci are now more intense and/or larger and there is evidence of multiple new hypermetabolic abnormalities.

It's quite bad, yes, but there is much, MUCH more to say here. I am trying to craft a mega entry that will attempt to synthesize certain things that have been happening to me since July; things that I have not really discussed and that I need to act on. I'll just say that coincidences are probably not just coincidences. There may be a new me in the near future.