April 12, 2013

Another update – this time with better news. It's been 5 or 6 weeks since I got into the Palliative Care/Hospice program through my health insurance. The hospital bed they delivered to the house made a big difference for me. I am actually sleeping better – for 4 or 5 hours at a stretch. It's changed my energy level for the better (and, Gordy also can attest, my “crabbiness” level has improved immensely– ha!!). It is so nice to be able to adjust that bed . Sleep deprivation was obviously taking a toll on me since November.

Within the past few weeks, my energy level had improved. The next big thing is that the doc prescribed what I call “cough pills”. I was coughing so much (particularly at night) that it was triggering vomiting, and I quickly lost 20 pounds (which I mentioned in my last blog) – very bad for energy. But these pills have cut down on the coughing, hence, no vomiting, hence, I can eat and – wow – my energy level is better. It really is amazing to look in the mirror and realize how incredibly awful I felt and looked just a few weeks ago.

Don't get me wrong; this is no utopia, believe me. The lingering side effects from the chemo treatment I had last year, plus the brain radiation in December are no picnic. But, as I've said many times in this blog, it could be so much worse. Uncomfortable – I can deal with that. I just have to take each day as it comes. Some days are pretty good; some days can be yucky and I deal with it. Oh, did I mention that one of the radiation side effects is acne? Yes, at 62, I am back at puberty. Thank goodness for RX drugs to help zap zits! But still – pimples at 62 – egads!

When I last saw my Oncologist in mid Feb, I was in pretty bad shape. I usually come in with a list of questions. But on that visit, I was so wiped out and had little to ask and little to say. This week, I left him a message to call We had a long, l-o-n-g talk. One of the questions I had for him was oral chemo drug we'd discussed last year. When I'd had a lung biopsy a little over a year ago, my cancer cells were sent off to California for Genome/DNA testing. The point was to find out whether my particular cancer cells had certain “markers” or “mutations”. Unfortunately, my “markers” are turned off. As a result, the drug would have only a one in seven chance of affecting (slowing down) my cancer. Also, the side effects from this drug were, well, not good – lots of gastric-intestinal & esophageal problems. Do I really want to spend the time I have left being sick & vomiting for a one in seven chance for any or no results? I don't like the odds. No. Quality of life is more important to me.

The one question– really, the only question - I had for him: How much time do you think I have? He said, “Maybe a year”. Now I know you may think I'm nuts (ok, ok, so you already know I am!), but I was so glad to hear that. I really thought he was going to say “three or four months”. Even if he's off by a couple of months, it was better than I was expected.

My sister, Nancee, from Georgia came here for a week a couple of weeks ago, and my sister, Micki, from NY is coming for ten days on May 1^st. God, I adore my sisters! It's been great to spend time with them.

I have a “project” I'm just starting – will probably take me a long time – but it will help occupy myself – am going through all of my parents photo albums. Oh, and they took a lot of photos over the years. I may very well be sending some of you photos. It is going to be a trip down memory lane for me, that's certain!

I am so incredibly grateful to my high school friends all across the country who have been sending me cards and letters. Thank you for remembering me; thank you for writing to me; thank you for bringing back such wonderful memories!! I always knew my GHS were special – you've proved it to me! I will update this blog again soon. Love - me