Life is an Adventure

Hello, everyone! Don and I finally arrived in Los Angeles late Monday evening after an adventurous series of delays and setbacks. First of all, our second flight was cancelled on Sunday because of the weather conditions in Houston, so we didn't actually leave Knoxville until Monday at 6:35 p.m. (EST). When we arrived in Houston, there was an unusually long delay in getting me off of the plane. Don had already gone out to the doorway to stretch his legs, and I waited for the airline personnel to bring the aisle chair for me. And waited. And waited. Eventually Don reappeared with a shocking announcement: the airline could not find my wheelchair. It had not arrived in Houston with us, and Knoxville denied having it there, either. You know how uncertain I am about traveling anyway, and this has to represent the epitome of my paranoia about such things.

Fortunately, a Continental Airlines zone manager named Nathalie came to our rescue. She stayed beside us from the plane to our next gate. She called ahead to LAX, and, after learning that they did not have a loaner chair to send out of the airport with us, she arranged to have one sent with us from Houston, and then followed it until it was on the plane with us. So, instead of riding around on my own belovedly-pitiful chair, I am cruising around in an airline loaner special that is twice as wide as me and much too deep. It is so heavy that I can barely push myself on a level floor, and can't manage it at all on carpet or the slightest incline. When I called today to check on the hunt for my chair, the man asked me for an identifying description of it. I told him that my name is written on the back of it in giant silver Sharpie letters. It also has a large hot pink luggage tag that says "LEMING" on the outside and has our address, phone numbers, and e-mail information on the inside, as well as a Knoxville airport gate check tag. It is missing one armrest, and blue padding is protruding from the other one. The poor thing is pretty much one-of-a-kind, and would be of little value to anyone except me. I will call again tomorrow to see if they have found it. If they can't locate it after 5 days, the man said that they will purchase a replacement chair for me.

I am actually quite proud of myself for not panicking about the whole situation. I mean, what could be worse for a disabled traveler than losing the most basic of all medical aids? Maybe I am finally getting a little better at traveling without fear. Unfortunately, traveling without getting lost is another matter. It seems that Don and I spend a good portion of our free time wandering around in Southern California. When we finally got out of LAX (after waiting in line to file the missing baggage claim) and waiting for a Budget shuttle that could actually get the wheelchair ramp to operate (third time was the charm!), we headed confidently toward our hotel without fetching the Garmin from the suitcase. We were just a couple of blocks from the hotel when we made a late-night error in judgment and turned the wrong way. We drove until we passed Rodeo Drive, and then we looked at each other with the alarmed realization that we were nowhere near our hotel. Don stopped at a gas station, got the Garmin, and we finally arrived at the hotel at 1 a.m. pacific time -- yep, that's 4 o'clock in the morning to us east-coasters. We fell into bed a half-hour later, utterly and completely exhausted, to get a few hours of sleep before our hectic Tuesday schedule.

Medical updates:

The orthopedic surgeon doesn't think surgery is a good option for me, because the surgery he performs (an internal hemi-pelvectomy, aka an "internal amputation) really is a last-ditch effort that would afford LESS use of my leg than I currently have. He doesn't think that the small amount of weight-bearing I am doing will cause any harm, and thinks that radiation might be of some benefit to me. Also, he won my admiration forever when he said that my lung tumors are "not the worst that he has seen" and that he sees some signs of calcification in them, which could mean that the chemo is killing them or that previous radiation might have done so.

Dr. Chawla's office is pleased with the results of last week's scans, so I had my third treatment yesterday and today. I declined the Neulasta shot in hopes that I can prevent the horrible side effects I experienced last month. It's a gamble, of course. If my white blood counts drop too low, I will have to get daily injections of Neupogen to rebuild them. It's a chance I am willing to take, so we will see how that turns out.

He says that there is a trial that he might put me on when I break from the Yondelis after 6 treatments or so. It is called SUCCEED, and it uses deforolimus, which is a targeted therapy rather than an actual chemotherapy drug. It has been found to lengthen the progression-free survival (a big buzzword in dealing with sarcomas) after a successful chemo treatment. The good news is that I could take the deforolimus by pill at home, which would probably mean fewer trips to California during that period of time. The bad news that this is a "double-blind" study, which means 50% of trial participants get the actual drug, and 50% get a placebo or "dummy" pill. I guess this wouldn't be the end of the world, because I would be taking a break anyway, but it would be disappointing to think that I wasn't getting something that could help me. Deforolimus does have side effects. The most common (70% of cases) is mouth sores, but there are also my personal favorites -- nausea and vomiting -- as well as loss of appetite, rash, and fatigue. So it's not a picnic, but at least it IS an option. I am so thankful to be getting treatment in a place where they don't feel like my cancer is the worst they've ever seen, never say "I've never even heard of that kind of cancer", and have a whole arsenal of treatment options after TCSC told me there was nothing left for me.

I feel humbled, hopeful, and eternally thankful to be given this opportunity.

So, place your bets now: Will the airline find my chair? If they don't, how long will it actually take them to purchase a replacement? (I'm not holding my breath on the "five day" guarantee.) Oh, well, the great Leming adventures continue, and here's hoping there will be many, many more!

:-) Sharon

P.S. -- Tune in next time, when you'll hear Don say, "No, I am not going to cross six lanes of rush-hour L.A. traffic to take you to that donut shop!"