Thursday, September 25, 2008
And I do mean everything...
Over the last few months I started writing a blog entry about a 100 times (approximately once a day since the last entry). However, each entry didn't sound like me, or at least the me I remembered. Some entries were laden with dark humor with a particular harsh twist on reality. Some entries were so boring, I fell asleep before pressing the 'enter' button to publish and thus lost the entry (no big loss I'm sure). Some entries were so sad I just couldn't commit to the hopelessness in black and white. So, yes, until recently I hadn't see seen myself as one with dark harsh humor, boring and hopeless. Perhaps I've changed.
I want to write entries full of hope, strength, and persistent faith, with amazing pithy quotes that people want to make into T-shirts. However, that is not my reality most days. If I was anything I was persistent. No longer. Often (after work) I'm just too tired to care to finish anything--even ice cream! And if you can imagine, sex has lost its allure (more on that story... but suffice to say that chemo changes everything). Chemicals change us, and therefore putting powerful chemicals into my body twice a day changes everything for the better and also sometimes for the worse. Chemo is the double edged sword that saves and kills at the same time. (Hey… that could be a t-shirt huh? )
Lili and I didn't go on vacation for a number of reasons, but we did go to camp in west Texas for a couple of days in June and July. It was a blessing, but I should have left my work at home. I feel guilty for being at the hospital so many days, so taking more time for a real vacation just seemed like too much. Perhaps I have learned my lesson to leave guilt out of the healing process. However, fear of losing the house and health insurance also hangs heavily over my head (and a few 100 million other Americans).
Things that are good: I was too tired to even consider evacuating for the hurricane. We survived with only damage to the fence, house and apartment roofs. Well we did lose everything in the fridge and freezer, but I digress. The good part was hanging out with neighbors and their friends making dinners from our thawing freezers. It was a wild combo some days, but it was nice to hang out with folks.
More good things: We were blessed with the best work crew in the world to help us paint and fix up the house just BEFORE the storm. The kitchen has been transformed! Now, we have a new stove with a working oven, a dishwasher, and a disposal!!! I know, I know and it's only 2008. Are we ahead of the trend or what? For a leukemia girl, the dishwasher is a great infection fighting tool!
Great things: Lili and I are extremely grateful to those of you who call and email to keep us connected to what's going on in your lives. Even if we don't write back, we read everything and share voicemails of information. It is our true lifeline to what life was like ‘before’ I got tired.
Super great thing: For one week I got to take a break from chemo. Nine months of chemo led to some crazy bad migranes that were impeding my ability to focus. It was a busy time at work, and the migrane mix was not a good combo. The trial nurse checked with the doctors and I got a ‘week off’. It was amazing wonderful fantastic freedom from the fatigue of the chemo and the headache. It took a couple of days for the chemo fog to lift, but then I had a few days of energy. I started taking the chemo again on the same day the hurricane arrived. That’s poetic huh?
My test results are good. The medicine seems to be working well on the leukemia. The issue now is managing the side effects. Quality of life is now the focus.(I'd like energy for more than 8 hours, fewer migranes, less pain and swelling, prevention of heart damage). Since the medicine is working, the doctors don't want to reduce the dose as they seem to be worried the leukemia will work around the chemo and become resistent at lower doses. So now it's my decision on if I should 1)lower the dose and enjoy today a bit more and risk some of my future, or 2) just work and sleep and perhaps have more of a future. Nothing is guaranteed no matter what I choose. WHAT WOULD YOU DO?
One of the hardest things about being physically and financially strapped to cancer is how much time it sucks. Lots and lots of waiting. Waiting for the nausea or migrane to go away. Waiting at the hospital. Waiting at the test place. Waiting for the car at the parking place. Waiting for pain pills to kick in. Waiting for the financial insurance person. Waiting to gather enough energy to do something other than work and chores. Waiting for the phone to ring. Waiting, waiting, waiting. I hate waiting. (ok, that’s not new I guess.)
Cancer has changed everything: How I pray. How I view the future. How I view my here and now. How I spend my money (bills). How I make vacation plans. How I make friends. How I spend my time. How I make career choices. How I sleep. How I make plans for the day. How willing I am to have a conversation or just sleep. How I respond. How I have sex. Cancer has changed everything.
Lili and I love you, we thank you for your support, and we miss you more than we can convey.