Recently in Cancer Category

Things have been happening lately, for sure. There's been a emotional and physical upheaval. I won't get into all the details in this post, but I will describe some of the physical.

Last Wednesday, I started feeling a pain and soreness in my neck. At first I thought that it was muscle pain related to posture (I may not have the most ergonomic environment at work or at home), and since I am now prone to minor muscle soreness, this seemed reasonable. But it never went away that day. In fact, it swelled up to the point where you could see it if you looked.

I was supposed to leave to go to the Retreat Yourself '08 retreat sponsored by Young Adult Cancer Canada (formerly Real Time Cancer) on Thursday afternoon. I still had some pain and swelling Thursday morning when I got up at 5:30. I figured that the prudent thing to do would be to get it checked out by a doctor, so I arrived at the hospital at 7 am. There was no one else in the emergency ward, so everything happened pretty quickly initially. I saw the triage nurse, then I got registered, seen by a medical student and then a doctor all within 90 minutes, which is pretty fast for a Canadian emergency ward in a large city.

As you know, I've been pretty stressed and depressed with the anticipation of the results of last week's scan. I've been very pragmatic and conservative about my expectations until this morning. This morning, and all day until the actual results, I was fearfully hoping that I could  hit a home run and be clear. Today I got the results. In keeping with tradition:

There is a previous history of esophagectomy and gastric pull-up for esophageal carcinoma. Since the previous PET scan, the patient has been on chemotherapy with the last dose given in May, 2008. The previously described small hypermetabolic focus located in the retropancreatic region on the left side of the celiac axis and inferolaterally to the surgical clips visualized on the CT scan, shows a similar maximum SUV of approximately 11 and on scanning, there is no evidence of significant change.

The previously demonstrated small lobulated hypermetabolic focus located anteriorly to the superior vena cava and therefore laterally to the ascending thoracic aorta (at the transverse horizontal plane of the carina level) shows a slightly more lobulated appearance and an SUV of 10.6 as compared to 9.7 in January, 2008.

There is a new focus of increased uptake in the region of the left lower internal jugular vein channel, at the horizontal level of the thyroid gland, measuring approximately 1.5 cm in diameter with a maximum SUV of 10.3.

There is no evidence of abnormal increased uptake at the sites of the small pulmonary parenchymal abnormalities visualized on the CT scan.

The rest of the total body PET scan shows no evidence of other sites of abnormal increased uptake to suggest the presence of active lesions avid on the FDG radiotracer at this time.

Very minor changes of the hypermetabolic foci located one of them in the mediastinum and the other in the retropancreatic region, since January, 2008, compatible with metastases. New small hypermetabolic focus in the left internal jugular vein channel, which is highly suspicious for a new metastatic lesion.

The rest of the PET scan appears normal.

Tomorrow, I will find out the results of last week's scan. I fully realized today what Julie already knew: I am frightened about tomorrow. I can talk all I want about my lack of faith in this chemotherapy bullshit and about how I am going to take care of this on my own and so on, but in the end, I am scared shitless about what the doctor will tell me tomorrow, no matter how calm I look on the outside. With each passing hour, I get a little more anxious.

In other news, I may get onto another project as early as next week. It'll be a summertime assignment, probably, so we'll see what happens.

I had my PET scan today to determine how much cancer is still in my body. I've had some back pain lately, likely due to yoga, which I will likely have to stop. This combined with the hard table you have to lie down on for 30 minutes left me feeling sore, tired and simply sad.

I am not sure what is wrong with me today, but these feelings of sadness and dissatisfaction won't go away easily, I think. This technically should be a time for optimism and hope, but it isn't at all. I think that the closer I get to the day of the results, which is next Thursday, the more that I am filled with a sense of dread.

But there is more than that. It's the dissatisfaction. What am I dissatisfied with? I know it has something to do with cancer, and it has nothing to do with those who have helped me. Maybe it's not dissatisfaction, but rather disappointment. All I know is that I am not very happy today, and the next couple of weeks don't look too great, either.

Maybe I just need to see more friends.

I promised to update people on things, and here is my chance to do so.

The last month has been up and down in a number of ways. Work has changed completely. We are in the last stages of our project. People are working overtime, but not huge amounts of it. We have essentially run out of people to do/fix the subtitles so, since I wasn't doing much as a PM anyway because of the nature of both the project and management, I was tapped to be the Senior Subtitle Implementation Programmer. (Did you like that new title I just made up? I've got management written all over me.)

This has changed certain things. I no longer have time to read blogs all day, and so I no longer feel the need to write about certain things right now. I'll get back to it, though, as I think that it is an important topic that most people would rather not discuss frankly. I am not nearly as bored as I was. It was a good bored, not a bad bored, so it wasn't really terrible at all. I got to read blogs all day, after all.

I was supposed to be doing my fourth treatment this week, but because I lost my voice on Monday, they thought it prudent to push it by one week. Which means that on May 3, I will be rather ill. But who cares about May 3?

I do. On May 3, 2007, I learned that I had a huge tumour in my esophagus. So I was wondering what I should do this May 3. What sort of ritual could I do? I can't say that I should have a celebration necessarily, unless I would celebrate my survival. I suppose I could do that. But perhaps a symbolic action would be more appropriate. Do any of you have ideas?

I hope to survive. I do have expectations of survival, but they aren't nearly as strong as they used to be. Last night I was awake all night thinking about my decline and death. I had to remind myself at 5 am that my chances are actually very good. It's hard to think positively (or rationally, sometimes) when you are suffering. That's what chemotherapy is. Suffering. I should see it as a cure, as a salvation, but when you can barely think, feed yourself or even stand, it's hard to be positive.

But I am not sad or depressed, since I am not fully into the belief that I will die. No one has said it, and treatment is only half over. Anything can happen, and that is where hope and fear coincide. I'll probably be my normal self in a day or two.

My brother-in-law says that I should be enjoying myself as much as possible. I wonder what the subtext is...

UPDATE: Immediately after writing this, I came upon this. If you believe in...stuff, well this is probably stuff worth paying attention to.

Cancer.

I never knew he had cancer. Apparently he's had it since he was one, which is why he went blind in the first place. Retinoblastoma. What's more, he was only 41 years old, which made him 21 at the release of See the Light. He already sounded like a mature and experienced musician perfectly at home with the likes of Stevie Ray Vaughn.

So he spent his entire life fighting cancer. I suppose that if he can do it for 40 years, I can do it for ...?

One of the most obvious criticisms of the Canadian health care system (and Quebec system, and it pains me that I have to separate the two) is that it can take months to get important appointments such as checkups, scans and surgeries. But since being diagnosed with cancer, I haven't had to wait at all for anything, really. For example, I spoke to Suj last April and got an appointment with a GI on May 3. It took about two weeks. On May 4, I spoke to my surgeon. On around May 14, I had a diagnostic laparoscopy. On June 7, I started chemotherapy. When I got an infected blood clot, I was almost immediately sent to a room in the hospital. My surgery was scheduled only three weeks in advance. Post-operative care has been within three weeks whenever I needed it, and often much sooner than that. This latest round, my appointment with the oncologist was within two weeks, and my chemo (which is tomorrow) was scheduled within a week of that. Easy.

People say that those who get treatment as good or better than mine are considered or assumed to be privileged, as in rich; they get what they need when they need it. Everyone else can go to hell, it seems. First of all, who is everyone else? Am I privileged because I am close to a major Canadian health centre? Is that it? I think that's partially the reason, certainly. Someone in Kuujjuaq probably wouldn't have the same care as someone here, certainly. But what else sets me apart? Am I privileged even for those within a short driving distance of a major Canadian health centre? Are there people in Scarborough or Pointe St-Charles that have to wait and wait for weeks and months for care, while I have to just call or walk into the hospital and get what I want, sometimes even before I want it? Maybe the staff just likes me, I don't know. I think I get along pretty well with nurses, actually.

Can anyone comment on these phenomena? Who is not getting served properly in Montreal, Toronto, Vancouver, etc.? I know that I had an advantage at the very beginning getting into the system, and perhaps that made ALL the difference. I was able to get referred into the system, possibly because I knew someone. I can't say for sure if that's true or not, but it may be true. I was examined by this specialist. But I don't think that that explains the treatment I have received since then.

Spoke with the oncologist today. They have decided to give me the FOLFIRI protocol, which is MUCH less brutal than the TCF protocol that I had before. Instead of spending the day in the hospital, I will spend 2 hours hooked up. Instead of a large fanny pack with 500 mL of 5FU over 5 days, I will have much less of it in a smaller non-mechanical delivery system (it's quite ingenious) over less than 2 days. I expect to be at work the whole time. One funny side effect is that men often lose their head hair, but not their facial hair. Maybe I sport a Shaft look. Or maybe I should not exacerbate the Mandingo stereotype, which is pretty much what Shaft does in my opinion.

I told the doctor and the nurse that since I am in much better mental and emotional condition that I could likely withstand a stronger protocol this time around. They decided to give me something moderate rather than extreme because I reacted so poorly last time around. I hope that they are not making a mistake by giving me something that is weak because I was such a baby last time. (Well, it WAS pretty fucking brutal. It was.) I don't see why we should prolong this any longer than it needs to be prolonged.

There is another patient about my age with the exact same situation. Same cancer, same surgery, same surgeon, same protocol. His mental space was apparently worse than mine. He is also saying that he doesn't think that he can continue with the chemotherapy. He's exactly where I was at the beginning of December, but there is a difference. He's had a very negative attitude throughout the whole ordeal. He also had some complications from surgery, but by and large, our experiences have been identical. I am told, though, that the difference between him and me is that my attitude has been, over all, much better than his, but specifically it's because he's never really lived on his own, nor was he raised to do this.

I find this interesting. Does this mean that those that left home earlier are generally better able to deal with adversity of pretty much any kind? I left home to go to university when I was 17 and have only lived at home during the summers between school years. Further, I instilled in myself the expectation that I would go to university and take care of my own affairs. Maybe I would be in the other guy's position now if things had been different. He's apparently more depressed and scared than I am. He's frightened, actually. I wish I could help him. There has been lots of talk about how coddled young people are. Maybe it's true. I mean, I suppose since everyone is going to university, they are living at home longer and longer, but what effect is this having?

On another, scarier front, it seems that my superpowers are quickly evaporating. Ugh...