Saturday, April 16, 2011

Snowballs, toothaches, and a brief sense of wellness

Had my slew of scans done during the first week back from vacation. Great results! Many places where there had been cancer before, no longer showed any signs cancer, such as the liver. The tumors had all either shrunk to a smaller size, stayed the same, or no longer could be seen. Truly amazing! Because MD Anderson abruptly decided to change their breast cancer tumor marker screening tool from the CA 27-29 to the CA 15-3, it was impossible to compare my new numbers to the old. But, on this my first CA 15-3, my level of 16.9 was well within the normal range of 0-25. Yay! When I saw Dr. Green, she was oh-so-happy with all of my test results ... And, I was, at that time, feeling really really good -- had been off of Xeloda for nearly 4 weeks and was still on my vacation high. Here's my own retrospective analysis of the last couple of months ... In the weeks leading up to our super vacation, I got off of Xeloda, and I started really feeling good. Was feeling like, yes, I can do things. I'd been so unhappy with my body -- the serious decline in fitness and good looks since I had to give up running some time ago had me down. Danny and I started taking some neighborhood walks. Brisk walks for a cardio workout, not just strolls. I again contemplated getting a treadmill or an elliptical to try and bring back my half-marathon body. Planned on a home workout with weights at least once a week. Did some sit-ups. I felt motivated. I realize now that it was what I'm calling a "false sense of wellness." Only it's a lot more complicated and twisted than that. It got me thinking ... Most of the time, when you take medication to treat an ailment, you feel better than you did when you were "sick." Not so with this cancer of mine. Even though I'm stage IV, I hadn't been feeling too very ill. I could tell something was going on, but for the most part, I was able to live life. But now I'm at a point where the cancer treatment makes me feel worse than the cancer symptoms! I try really hard to keep a straight head in all of this. I know that were it not for modern medicine, I wouldn't be here today. That is clear. But being off of Xeloda for 3 1/2 weeks felt SO good, that, in retrospect, it highlighted how lousy I felt while on it. I hadn't fully realized how much less energy I had while on it, until I got off for a period of time long enough for it to mostly get out of my system. I don't even know what my normal is anymore! Back on Xeloda after the Hawaii trip, I am back to not feeling like doing much. A general laziness and lack of energy. Wanting to go to bed at 10:00 instead of not being able to fall asleep until 11 or 12. Definitely not interested in fitness walking or buying an elliptical! Basically doing the bare minimum to keep the house and business going. Barely managing the kids and their schedules. Leaving a lot of housework to Danny. Being a sorry excuse for a wife and mother. And to top it off, I have a new problem! Since returning from Hawaii, I've had a toothache that is on and off. Started out fairly mild, but has progressed to AWFUL. And what I keep thinking is "Why???!!!" I am officially all-out on the Why Me? bandwagon, something I've managed to stay away from all this time. Its a depressing development, and I'm not doing well. As if I don't have enough to deal with! My lower jaw on the right side aches, and sometimes it is extremely painful. The pain radiates to my ear and temple, and down my neck. At times the entire right side of my head feels tender. And so I wonder, does it have anything to do with the cancer? Does it have anything to do with the cancer treatments? Or is it just a completely unrelated yet sucky condition? Do I have brain mets? Have my years on Zometa affected my jaw in some way? Have I developed osteonecrosis of the jaw, a potential side effect of long-term Zometa therapy? Knowing that Xeloda can cause gingivitis (and my gums have been mildly bleeding periodically since being on it,) has that then caused my teeth to move, hence affecting my bite and jaw? Trying to figure it all out! Last weekend, the pain was so severe that it woke me up in the middle of the night, 2 nights in a row. And so I got up and took Vicodin -- 2 of them. I had been taking two Tylenol ES tablets, which hadn't been fully relieving the pain, sometimes not touching it at all. Clearly it was time to bring in the big guns. Taking 2 Vicodin knocks me on my butt! Makes me tired and sometimes sick feeling. Had to miss church to stay in bed. I decided that I could deal with it myself no longer, and I called Dr. Green first thing Monday morning. Only when you call, you can't actually speak to a person, unless you consider your issue a "medical emergency," in which case you get connected to a triage nurse. Well I don't consider tooth/jaw pain a medical emergency. Maybe some people do, but I don't. And so I left a voicemail, and just for good measure, I also sent a "secure message" through the myMDA online messaging system (like a private email.) I received a call and message back from Dr. Green's nurse, and explained my problems. I was told that they would put in for a consult with the dental department, but in the meantime I may want to see a local dentist for faster service. She asked if I needed pain medication, and I said I had a good supply of Vicodin at home. It was a plan, and I was going with it. I saw a local dentist. X-rays were done, he tapped on and blew cold stuff on the suspicious tooth to induce the severe pain I'd been having, and told me that I "may" need a root canal. But it wasn't clear. He wasn't sure, so he referred me to an endodontist for evaluation and possible root canal. He also prescribed an antibiotic. I decided to not schedule an appointment with the endodontist. Instead I will wait for the consult with the MDA dentist. I was told long ago that because of my long-term use of Zometa (for bone mets,) that should I need any dental work, I should have it at MDA. In the meantime, the pain has been at times excruciating, at times tolerable, and at other times non-existent. All week I've had good and bad days and nights. I try to stick with Tylenol during the day, but when it's really bad I take Vicodin. I've moved to 2 Vicodin every night at bedtime, because I don't want to wake up in the middle of the night in severe pain again. It's way too much Vicodin for my taste ... makes me feel yucky. I've been spending way too much time laying on the sofa and watching HGTV, while my family does things without me and my husband has to do all of everything. It is no kind of life, and definitely not my kind of life. My house is a mess. My kids are eating canned meals and frozen fast food for dinner every night. Danny is having the do the work of both of us, at home and some days at work. I have guilt and feel like crap. Depression and bad thoughts creeping in! And also ... adding semi-regular narcotic use to my intake over the past week and a half has added insult to injury regarding my bowel problems. I had been managing the Xeloda-induced constipation with once- or twice-daily Dulcolax stool softener. Not cutting it now. Am suffering with painful poopouts and have replaced the Dulcolax with Senokot-S nightly. The problems just seem to snowball. And speaking of snowballs ... I am a huge snowball fan. Chocolate with condensed milk is my favorite; has been since I was a kid. I know now that I've moved away from my home town of River Ridge, Louisiana (New Orleans area) that no else calls them snowballs. Most folks call them snowCONES. But here's the difference: a snow CONE is what you get at a school/church carnival in a cheap flimsy cone-shaped paper cup. The ice is hard and the juice only comes in blue or red and immediately falls to the bottom of the cup. There is usually no utensil given with a snowcone, so it's not easy to eat and it's never very good. If there is a utensil, it's usually a stroon, a sad and pathetic combination of a straw and a spoon that functions poorly as both. You don't get much from sucking it like a straw, and the spoon is too little and is usually sharp and uncomfortable on the lips. A SnowBALL, on the other hand, comes in a sturdy styrofoam cup. The ice is soft, fluffy and "shaved," with a special machine, the Snow-Wizard (a New Orleans-made tradition.) The "juice" comes in oodles of flavors that are thick and rich and they soak into the ice to flavor it instead of dripping to the cup bottom. A straw and plastic spoon (separate) are always included. Christa said today that a SnoBALL is a more sophisticated than a SnoCONE -- so right! Anyway, we got snoballs today after David's baseball game, and shortly after finishing mine, the tooth/jaw pain was really bad! And so goes another of the little joys in my life. Uggh.

Tuesday, April 5, 2011

Vacation boosts the soul!

Hello all! Had a great vacation in Hawaii with my family (husband, kids and mom)! Visited Pearl Harbor, Volcanoes National Park, a black sand beach, the towns of Hilo & Volcano ... kayaked on the Pacific to an offshore island, relaxed in a beachside cottage, hiked (lots) and took in all the sights that Hawaii has to offer. At least as much as we could possibly squeeze in in 8 days! Even though we were active, we still had lots of down time to just relax and soak it all in. Doesn't sound like activities someone with stage IV breast cancer can do? Wrong! I'll admit the hiking wasn't as easy as it used to be. I'm not in the shape I once was, but I pushed myself (as always) to do all that I wanted to ... so I can say I did! The only thing we didn't do that was on my list of Hawaii "must-do's" was snorkel. The plan was to snorkel in Kailua Bay after our kayak excursion. BUT, my kayak adventure got a little marred from the get-go: before we left the kayak rental facility, I got sunscreen in my eyes! What bad luck! Ugggghhhhh! It was horrible! Leave it to me to ruin a perfectly good event that I'd been looking forward to for months. My eyes ran (poured, really) and burned like fire the entire time. Disappointing, to say the least ... I wasn't able to fully and clearly visualize everything, what with the squinting and eye-running and for a large portion of time, closing my eyes. But I still count it as an awesome and beautiful experience! Anyways, after the kayak trip my eyes were still pretty bad off so we decided to forgo the snorkeling. Which turned out to be for the best anyway, because we had planned a lovely dinner that night at a special restaurant for my daughter Christa's 14th birthday. By the time we ate lunch and went back to the house and all of us cleaned up and showered, it was time to head to Honolulu to eat at the Top of Waikiki, a rotating restaurant on the 16th floor of a downtown building. A little pricey, but definitely worth it for a special occasion during a once-in-a-lifetime trip. Then we perused a little marketplace for some unique souvenirs with a Hawaiian flair. A fun time ... for us girls anyway. Danny wasn't too happy ... his wallet was MUCH lighter at the end of that night! We took LOTS of pictures, because I love taking pictures and I don't want anything to happen that isn't documented in photos. Of over 700 pics, we got several really good ones, but even the good ones don't do Hawaii justice. Especially at the beaches. You can't GET the whole experience of the sights, sounds of the crashing waves, feel of the constant breeze, and look of the swaying palm trees, in a photograph. For those you have only your memories! That's it for now. It's too bad that the vacation high doesn't last long once you're back to your regular day-to-day life! Thanks for reading, more later. (hopefully not a whole month later!)