Overdue update

I apologize for not updating the blog before now. It's amazing how the day really gets away from you even if you aren't doing much of anything. The morning rushes by, then it's lunchtime, then the afternoon rushes by, and then it's dinnertime and bedtime. Last week I couldn't keep track of what day it was. Guess I've been home too long already!

My recovery is coming along slowly but surely. I've been walking at least six days a week since I came home from the hospital. I do a little more than a mile most days, but my speed is significantly slower than it was prior to surgery. I start off at a good clip and shortly lose my breath, so I have to force myself to slow down and just amble. Unfortunately, it's getting colder here (windy too) and getting myself out there is tougher each day. As I think I mentioned, our treadmill decided to kick the bucket just when I was assigned this mile a day task, and Ed has been trying to either fix it or decide on a new one. The ones today are much more expensive but more cheaply made than ours, and it's tough to decide to throw $700-$1,000 at a machine that might only last a few years -- and require an expensive service contract, too.

My steristrips are still attached, although they might be removed at the surgeon follow-up tomorrow. The area where my chest tube was inserted is still tender, but I'm getting much more use out of my right arm lately. I even made the bed yesterday. LOL Seriously, when I first got home I had a difficult time brushing my teeth and getting a shirt on and off. Today I can get dressed, shower, lift a milk or water bottle (provided it contains a half-gallon or less), water my plants, tie my shoes, etc. I haven't done any cleaning yet, but I did cook dinner one night. I'm still not putting any weight on, but it's not for lack of trying. I've been eating stuff I normally shouldn't be eating, but we're trying to reverse the trend. Once that happens, I'll get back to more of the good stuff and less of the sugary stuff.

Our appointment with Dr. K was a mixed bag. I let Ed voice his frustration without interrupting him. I have a tendency to think that if people like me, they will treat me better, so I try to avoid conflict with the doctors and nurses that I deal with. However, I realized that (a) this doesn't really get me better treatment and (b) it doesn't allow us to honestly voice our issues with the doctors. I don't think Ed got much satisfaction other than being heard, but he needed to get all his issues out on the table.

In summary, we learned the following: There is a clinical trial set to start at MSKCC within the next month or so that Dr. K recommends for me. It involves two chemotherapy agents that have been tried individually on other cancers, and one showed some success on Ewing's sarcoma. This phase II clinical trial seeks to combine the two agents and see how effective they are against other types of sarcomas. I don't have any details of the trial as it is new and the meeting to hammer out the final details was taking place yesterday afternoon. She said she would get back to me in about two weeks. That is about the time that I would be restarting chemo under any circumstances, as she recommends waiting four weeks after surgery.

She contacted an interventional radiologist (at my suggestion) about other procedures to address the tumors (RFA and embolization). The radiologist, presumably after looking at my records, informed her that these radiation techniques might debulk or reduce the size of the tumor, but because of the main tumor's location on the nerve that is making me cough, it could do more harm than good. She recommends seeing my pulmonologist again (which we are doing today) to see if he can prescribe something to give me more control over my cough.

Tomorrow we see the surgeon, and I would almost guarantee that he is not going to be one of my fans by the time we are finished. Although Dr. Windsor (my NJ oncologist) explained to me the limits of scans, I still want some answers. Dr. Windsor said that scans are in two dimensions only, so if, for example, you held your hand close to a wall, the scan would show that your hand was near the wall, but it would be impossible to tell how close to the wall you were or if you were touching it. He also said that thoracic surgeons are among the most aggressive surgeons he knows, so if Dr. Flores says something can't be done, we should take him at his word.

That's not really my issue at this point. My issue is why we weren't fully informed that the surgery might not be successful. He mentioned that it might not cure my cough, but he never indicated that he expected less than success in removing the tumors. If I had known there was a certain percentage chance that it wouldn't be successful, I might have chosen chemo prior to surgery. Because I thought we were going in and taking them out, it didn't make sense to waste the chemo first.

So, we await more answers and information on the clinical trial. I will try to do better in posting, although this is the most I've typed at any one time since the surgery and I can feel it in my back. Thanks for your continued support. I deeply appreciate it.