[Cross posted with minor edits from the private web site for Taylor Willingham at CareFlash.com.]
Cancer is a fickle disease. Apparently, it likes to tease you. One week the news is good, everything looks positive, the tumors are shrinking, your energy is good, and everyone marvels at how healthy you look. Then you wake up one morning with serious pains in your abdomen and back. You go visit your friends in ER- including the guy in the clown scrubs who once again screws up the IV he insists on inserting in the back of my hand in the most inconvenient location! Obviously he’ll never learn so why don’t I learn and refuse to let him touch me?! Then you spend a couple of days in the hospital getting tests that tell you just how quickly good news turns bad.
At least that’s what cancer has done to me this past month.
I got up on Thursday the 9th in great spirits and health. At 8:30 a.m. I was at Johnny’s Bar-be-que running the Salado Education Foundation meeting (I’m President) for the first time in five months. I came home at 9:30 and got ready for a visit from Vicki (the Austin Vicki I haven’t seen in months!) when I started feeling droopy. Poor Vicki. She arrived just in time to help us throw my medicines and and few personal objects together and send me off to the ER. They kept me overnight which meant that Terry had to leave work, throw a few things together, and come stay the night. Mom and Dad were with me the whole time, too. Somehow God gives them the energy it takes to be my caregivers. Its amazing to me.
My oncologist was in Rome on holiday. (Images of a romantic venture to Italy danced through my dreams in the hospital and sustained me during my stay – much better than his reality. I learned later that he was there as a chaperone for a group of high schoolers!) One thing I’ve learned through this experience is how important it is to have medical staff you trust. You may be the patient who is in control and is making decisions about your health care, but you have to feel like you have doctors who understand your situation, care about your well-being, and are willing to tell you the truth even when it’s hard to take. I was blessed with two outstanding oncologists who filled in during his absence. Again, God was watching over me.
I spent four evenings in the hospital and during that time, they took another picture of my innerds (CTScan). Contrary to the CT Scan in May, this picture looked more like my scan in March with large cancer globs on my liver – the cause of my back and abdomen pain. We can only conclude that the current chemo regimen is not working. I had just completed my two weeks of Gemzar and was still carrying my 5FU bag around pending one more week. I left the hospital on Monday, took another treatment of Gemzar on Tuesday and then saw my regular oncologist (mostly recovered from his Roman Holiday!) on Thursday. I still got my hug and kiss on the forehead, but this time it was for comfort, not for celebration.
Still, he’s one tough MD and he’s willing to fight as hard as his patient so we’re going back to the drawing board. Actually, you might say we’re getting a bigger drawing board because we’re on a mission to research any and all possibilities. His first recommendation was Avastin. This has shown promise in Renal Cell Carcinoma in conjunction with Interferon Alfa which boosts the immune system. Unfortunately, it can also cause gastrointestinal perforations, sometimes fatal, in a small number of patients. Normally, I’d ignore such a small danger, but I already have perforations severe enough that I’ve lost the ability to eat food and am on a full fourteen hour IV regimen of TPN for my nutrition. If I ever hope to repair my perforated colon and intestines, it seems like I’d best not do anything likely to exacerbate the problem. Even though I fear that it looks like I’m wimping out, I know that there are other options out there. My dear husband assured me that no one will think less of me for turning down an option that doesn’t feel right. So here’s my plan…
I’ve contacted a researcher at Baylor who was recommended to me by the Director – Office of Clinical Ethics and Palliative Care Baylor Health Care System, someone who attended the AmericaSpeaks Our Budget; Our Economy project in Dallas. I was the Site Manager for Dallas last July and Dr. Fine attended by invitation through my friend Chip Fagadau. Dr. Fine was so impressed by the process that we began an e-mail exchange on the application of deliberation to public policy issues related to end of life decisions – a topic I’ve tackled using the NIF issue books. How ironic that our conversation eventually became very personal as I shared my diagnosis with him! He suggested an oncologist in Dallas who focuses on Renal Cell Carcinoma. Hint, hint, Dallas friends…Clear out the spare bedroom, I’ll be heading your way soon. (Hey Lukensmeyer, here’s a story for the AmericaSpeaks brochure you probably never expected! Dr. Mathews, once again Kettering and NIF are changing my life – maybe even saving it. Who would have guessed?)
Yesterday I used every last bit of energy to make calls and do research. I’m lining up my options, anticipating my insurance needs, and wearing out the keys on my computer. (Oh wait, they’re already worn. Brent, can you help me get a new set?)
In other words, I’m still fighting with every tool I have at my disposal. But I’m also recognizing that I ‘m still trying to do too much on my own and that I need to lean on my husband more. He’s always there and he’s fantastic at anticipating my needs – greeting me with a loaded syringe of morphine just as I start to get up from my chair to get some pain killer, refilling my ice when I’m down to slivers, gently folding back the sheets to welcome me to our comfy bed at night. But I need to do a better job of laying out options for him and asking for his advice. It’s just hard to do when you’ve been single for 36 years.
One way I’m really relying on him these days is for comfort. I’m crying because it feels good to get it out of my system and I’m using every shoulder available to me physically and emotionally. Today, we stopped by the garage sale of the church we just joined four weeks ago and all sales practically came to a stop as I was greeted with love and prayers of people who barely know me. Terry and I have wanted a church home since we got married and I feel like we found what we were looking for in the Salado United Methodist Church. This will strengthen our relationship with each other and with God during this dark time.
God blesses me again!
BTW, Mom told me I should be positive in my posts. I told her I’d rather be authentic. So the news ain’t great, but it’s not enough to end the fight. I’m still in there slugging away because I know I’ve got a team of you standing in my corner lending your prayers and love. Oh what blessings you all are!