Hello folks,
I can always tell when I've gone too long between blog entries because I start to get lots of queries and "where's James?" questions, and I think this one has gone much longer than it should have. I don't have much energy for a clever story (an attempt at a clever title is all you get this time) but I know everyone wants to know what's going on and the past few weeks since my last blog entry have been pretty brutal. As many of you know, I've been having breathing problems that started sometime around the holidays. At the time it was a light cough, and basically was tolerable, except for being one more disruption to sleeping. After talking with the doctor and trying a number of different remedies we've been managing it to some extent, but it's continued to get worse and worse.
Over the past few weeks, things have really taken a downward slide: the cough increased, and I started noticing that I couldn't make it from room to room inside the house without being completely winded and in pain when I got to my destination. So with a little gentle prodding from Marcus, the doctor moved up my regularly scheduled CT scan so we could have a look at what's going on inside my chest. So, late last week, (4/13) I had the update with the doctor. The determination was that each lung had about 2 liters of fluid on it (yes EACH lung). It's sort of hard to fathom 2 coke bottles inside your chest -- didn't know there was enough room in my chest to accommodate that; but I guess that explains why it's been causing so much discomfort. Doc recommended that I have the fluid extracted (which I did last Monday) through a process called thoracentesis. This is the process that I have dubbed "The Hoover Maneuver" -- since that's basically what happens: an ultrasound-guided needly-catheter thing gets inserted between your ribs from the back, and then they attach the vacuum cleaner to pull out as much as they can get in hopes of making you feel vastly better. I felt some better, but still not great. Unfortunately, they're only able to do one lung at a time (unless it's an extreme case, I guess) due to the risk of collapsing a lung. If both lungs were to collapse, it could mean a hospital stay -- which I'd like to avoid if at all possible. So at this point, I've had some of the fluid extracted from the left lung, and tomorrow (Monday) I'll see the pulmonologist to determine what needs to be done (either a simple extraction of the fluid on the right lung or installing a more permanent catheter to drain the lungs more easily on a routine basis. Part of me hopes it does not come to that, but the other part of me knows how much of a pain it is to have the drain done -- the Hooover Maneuver is not fun -- and would like a handy spigot instead of begin jabbed in the ribs again. Hopefully, we'll understand better what's causing the fluid buildup -- apparently it's quite common in folks with my maladies, and may be the result of chemo itself, the cancer, or some kind of infection. Tomorrow we should have some definitive information about what's causing it, from the samples taken during the procedure.
In other news, the doctor also told us that based on the CT, and all the other results we've looked at, the latest chemo regimen does not seem to be as effective as we'd like, and he's recommended that I move to a different group of doctors called the "Phase 1" group which does "targeted therapy" -- I don't have a lot of information on this yet, but basically, these are applications of treatments for non-standard uses. For example, some patients receive benefits from taking drugs that are typically used to treat other types of cancers, etc. In my case, the tentative belief is that my cancer cells may have developed a specific genetic mutation that allows it to sneak past the chemotherapy. There are some drugs that have seen good response in these kinds of cases, so we're hopeful that we'll be able to confirm the presence of that mutation and go about the business of kicking the little bastards in the teeth.
As you can imagine, all of this has left me feeling more than a little depressed, and I'm having to admit it and start dealing with it. My characteristic good humor has just about run out, and as many of you have noted, I've begun to turn inward on myself. I'm quickly realizing that's not helping things: it's making them worse. Writing this blog is a conscious effort to break out of that downward spiral -- sometimes you just have to take a mind-over-matter action and get back out there. You guys are my support and strength, so I can't afford to lose contact with you -- not even for a minute. Forgive me if I've been out of contact more than I should -- between physically feeling bad and the emotional knocks we've taken over the past few weeks, it's been pretty tough not to just go fetal. This is by far the scariest time I've experienced so far: new doctor, new treatments, and so many complete unknowns. I'm making a sincere effort to get back into the communication routines and hope that you can all forgive me for being out of the fray for a while. Hopefully I'll be feeling physically better in the next few days as the fluid dries up and I start the new treatment (the evaluation with the new doctor's group is on Tuesday 4/24).
I love all you guys, and appreciate your support as Marcus and I have gone through this ordeal, and I NEED all your prayers, thoughts, and well wishes. Thank you all again and rest assured I'll be updating you over the next few days with news of what's going on.
Your friend always,
James
Sending love, love, love.
ReplyDelete:)sending you all the positive energy i can muster up :)
ReplyDeleteJames. I'm sending you lots and love and hugs from Austin. I'll keep you and Marcus in my thoughts and prayers. You are a treasure and I admire your strength now in dealing with these physical infirmaties. Please do keep us posted! Maybe I'll learn to spell one day.
ReplyDeleteJames you are the most unique, beautiful person and communicator I have ever known. I love and have always loved, the way you articulate the world and your experiences, feelings, antidotes, jabs, slices, kicks and winks about life. Reflecting the world through your eyes extends love and hope to those who wait and look forward to what you are thinking on any given day. Universal, infinate energy to you in this experience of life. Linda H
ReplyDelete