Thursday, October 28, 2010

Health Care Chills

I just got health care chills, and as a veteran consumer of health care, I don't GET health care chills. Nothing was shocking, until today.

I am in Phoenix, AZ to go to my father's first appointment with his oncologist. He was recently diagnosed with multiple myeloma (MM), a cancer of the plasma cells. Plasma cells are blood cells that make antibodies called immunoglobulin. I am a firm believer that you need lots of people paying attention to health care matters. I take advocates with me to important appointments and think everyone else should too. If you disagree, maybe this will change your mind. Too many cooks can spoil the broth, but not enough cooks can also be devastating. The doc we saw today will not be my dad's main doctor, but he was who was available for us to have a consultation before my dad is scheduled to begin chemotherapy next week. Let me say from the outset that this is no slacker practice; it's definitely a top oncology practice in the area.

For this instance, I had read up on MM to brush up for this consultation, and had read from two excellent sources that if a patient uses certain chemotherapy drugs, it rules out the option of the patient getting a bone marrow or stem cell transplant later. One of my questions for the doc today was, "Is my dad a candidate for a marrow or stem cell transplant?" I got a very non-committal, "We'll figure that out later as we see how things go" kind of response. I told the doctor, "I read in the book your office gave us and on the Mayo Clinic Web site that use of certain drugs rules out this option. Are you planning to use one of those drugs?" The doctor looked at the chemo order and said, "You're right. We are planning to use that drug and it would rule out the transplant option. Clearly we need to figure this out before we begin treatment." The doctor said he would consult with my dad's oncologist and their practice head and get back to him. He added, "If that delays therapy a week or two, it's worth it." We said goodbye and my dad and his wife said that they were really grateful that I was there and had brought that up.

I went to the bathroom, shaking. It is the most dramatic example I have of the need for patients to be their own advocates. Gone are the days where you can assume that doctors have your back and all you need to do is listen and trust. Sorry, hon, you need to take a crash course and become a bit of a doctor yourself, or you can be totally screwed. It is harrowing to think that if I hadn't read the info I had and challenged the doctor on it, my father could have had one dose of a drug next week that would completely rule out his options for treatment forever. Doctors are too stretched to give every patient the best care they can; I happen to think it's an effect of our insurance-driven health care system: docs have to see 35-50 patients a day just to earn enough to pay their bills and draw a decent salary. No doctor can keep great tabs on that many people a day; it would be super-human.

Another dramatic example of the need to be your own advocate from my own health care saga, is that I had to ask my doctor for IV antibiotics for my Lyme Disease. I had read that people with my degree of infection rarely, if ever, get well from just oral antibiotics alone. My doctor was about to discharge me from his care with just four weeks of oral doxycycline therapy, when I said, "I've heard from many sources that people with neurological damage from Lyme need the IV antibiotics, too. Is that right?" He said, "Oh, you want to try that? Sure." I saw a dramatic improvement after the IV treatments; until I had them I could not wash my own hair because I couldn't lift my hands to my head. I had and still have a long road to go in my healing, but there's no way I'd be where I am without those four weeks of IV Rocephin.

I am superbly grateful that I have the wherewithal to be this kind of advocate for myself and my loved ones, and that I have people in my life, like my husband, who do the same for me. I shudder to think about the people who don't have the resources, intelligence, or communications skills to do the same. It's scary to think that your entire quality of life -- or your life itself -- can hinge on the extent to which you do so effectively.

Saturday, October 23, 2010

My Celebrity Encounter

I recently got back from a whirl-wind trip to New York City, where I pushed myself entirely too hard, but had a great time. I love theater, especially musicals, so was glad to buy deeply discounted tickets for two shows through BroadwayBox. The first was Rock of Ages, a show with a weak plot that basically is an excuse to string together every hair metal and arena rock anthem from the '80s. Nothing could be more my cup of tea, so I was super-excited to see this show. Luck was on my side that night; I bought really cheap seats in the back, but the box office informed me that they were upgrading me to 8th row center. Whoo-hoo! My next lucky break was when I noticed the guys next to me were holding LED "lighters" to wave during the ballads. They were handing them out of the door, but I was oblivious to that. I got out of my seat to track one down, but the theater employee told me that they had run out. Oh well! I walked away, but the employee ran after me -- she had found a "lighter" on the floor.

I sat down to read my program, and saw Dee Snider listed in the cast. For the uninformed, Dee Snider is the awesome, awesome singer for 80s hair legends Twisted Sister. He is also the host of the hair metal radio show "House of Hair," and was one of the artist leading the fight against Tipper Gore's Parents Music Resource Center (PMRC). My mom still teases me for having a hand-made "I hate the PMRC" sign on my bedroom door for much of my adolescence. Interestingly, Dee and Alice Cooper are heavy metal's family values guys, having been married and staying faithful to one woman for many years. That led to Dee Snider recently taking a great snap at Al and Tipper Gore when they announced their separation. So, back to me: when I see that Dee Snider is in this show's cast, I lose it; seriously, I get so excited that tears are leaking out of my eyes. This led me to text my sister and my husband the following message: "I am 8 rows away from Dee Snider. Give me one good reason I shouldn't shout, 'I love you, Dee!'" My sister replied, "Because I'd have to disown you as my sister ;)."

The plot for Rock of Ages is feeble, but I enjoyed it anyway. How can you not like a show that turns REO Speedwagon's "Can't Fight This Feeling Anymore" into a gay love anthem? I have to say that the audience sucked; they were not into it, and the show is meant to be a big old sing-along. On the plus side, Dee Snider looks amazing.

I have always wanted to hang out after concerts to meet stars, and the various people I attended with, usually rationalists like parents or husbands, always nixed my plans. Finding myself alone in NY with no one to nix my plans, I decided to try to make a go of meeting Dee. I sniffed around outside until I found the stage door exit, and watched various actors leave, including the lead, Joey Taranto (what a cutie!). I asked some of them to sign my program. A group of people were hanging around, prompting the security guard to ask who they were waiting for. I appointed myself the spokesperson of the group and said, "Dee." The guard replied, "You know, he's really new to the cast, and he has family in town and he's showing them around. He'll be at least an hour." This was met by a massive groan, and all but about six people left. "That's ok, I have nothing better to do," I lied. After the crowd dispersed, the guard looked at me and said, "You are a true fan. I was screwing with those people. Dee won't be an hour. If they were real fans, they would've stayed." Yeah!

Ten minutes later I was rewarded with Dee Snider. I said, "Dee, I have been a fan of yours for decades. I read your book when I was a kid, and it helped me." Yes, he wrote "Dee Snider's Teenage Survival Guide," and I am probably one of 50 people in the country who has read it. In fact, note that the first review of it on Amazon says that it was "published in one of the Russian teen magazines." At the news that I read his book, Dee gave a warm, huge laugh and said, "YOU DID?! That's awesome!" before taking me in his arms. He was really sweet, genuine, and kind, and it was a huge rush for me to meet him. Yes, he signed my program, but no, I don't have a photo, but that's ok. When I was hanging around the stage door, I was slightly nervous that I'd meet Dee and that he'd be an asshole; I specifically thought of the line from "Limelight," a Rush song : "I can't pretend this stranger is a long-awaited friend." So, I was relieved by Dee's friendliness.

In a tangentially related closing, I just became full of gratitude for my parents and their senses of humor. Between me buying books like Dee's survival guide and "The Satanic Bible", the anti-PMRC sticker on my door, and the six-foot posters of Motley Crue, Poison, and other guys who looked like chicks literally covering my wallpaper, I give my parents a lot of credit for tolerating that stuff and not laughing when I could hear them. I can't imagine what they were thinking, but I'm grateful because I really think I might have attempted suicide if not for the outlet I found in music. Junior high through high school was the worst time in my life, and rock music made it bearable.