The last few months have been all about change. I’ll share some of the changes with you. This will be an extra long post, because a whole lot has happened, and I need to catch you up.
I got the Cyber Knife surgery. Laura came with me and took pictures of me strapped to the gurney with my immobilization mask bolted into place. The Kaiser radiation oncology team made the mask by starching a mesh laundry bag and letting it dry on my face (not really, but that’s how it looked and felt to me). With the straps tightened, Laura said I looked like Hannibal Lecter, which is totally cool with me. Remember this if I ever offer you a “nice Chianti.”
The technicians made Laura leave the room once I was strapped down. They shut me into the room with the robot that would perform my “surgery.” The walls and door of this room are six inches thick, so the technicians aren’t exposed to the radiation. Not surprisingly, this wasn’t a comforting thought for poor Hannibal Lecter (namely, moi). But I’m sure he would have loved the classical music they piped into the room to help me relax (and not move). I lay there for 45 minutes while the robot shot radiation at my head from every conceivable angle, each shot intersecting at the one remaining tumor in my brain. It didn’t hurt at all, although I did feel a little dizzy when Laura drove me home, and I’ve had some twinges in my head since. Practically nothing to even write about, which may explain why I haven’t written here in such a long time.
You don’t get results from the Cyber Knife right away. You have to have subsequent MRIs every three months. It takes a while before they can be sure the tumor is truly dead. Dr. Millender now says she believes mine is dead. Yay!!! There is a dark void in the center of the white area on the MRI, like a doughnut hole, which she says is the dead tumor, and the hazy white area around it is most likely bruising caused by the radiation, which will dissipate in time. However, she can’t be 100% certain until the MRI shows nothing, which could take a while.
Dr. Doogie asked to see my infected toe during one of my monthly visits, and decided to lower the dosage of my Tarceva, after taking me off it for a week. He said the toe was a side effect of the Tarceva. I tried to tell him I could live with the toe, but he wasn’t buying it. About a month later, he called me to report that my latest C-T scan had showed progression of disease, and he was going to take me off Tarceva completely and put me on regular chemo. I was gobsmacked (a great British word we should import). I went into full-on negotiation mode. I asked him if there was any other targeted drug I could take instead. I mentioned one I’d heard about. Then he said something that made me decide to get a second opinion. He said that I’d been on Tarceva for more than nine months, which was the average amount of time before progression. The way he said it made me feel like I was just a statistic to him, and he wasn’t as invested in keeping me alive as I was, so I decided to get a second opinion. (And I urge any of you going through anything similar to do likewise, no matter how much you may like and respect your doctor.)
I’m so glad I went to Dr. Amy Nelson for the second opinion. My radiation oncologist, Dr. Millender, referred me to her, but said that I might find her direct, matter-of-fact style off-putting. Uh, no. I laughed and told Dr. Millender I can handle powerful women just fine. Dr. Nelson will tell you the truth, but she’s not a “company man.” She can think outside the box. In my case, she may very well have bought me some extra time. She reviewed my file and the scan. She also looked at my big toe. Then she told me she would refer me to a podiatrist, because it looked to her like an ingrown toenail. She explained that she didn’t interpret my scan results as progression of disease, either, although she was careful not to throw Dr. Maloney under the bus. Whatever. I can read between the lines. Her reasons for looking at the scan as evidence of stability instead of progression made perfect sense to me. Sometimes little tumors can appear on one scan, and not on a previous (or subsequent) one, because the MRI machine takes pictures of cross-sections that are about five millimeters apart. Any tumor smaller than that can appear and disappear in the blank space between cross-sections. All my “new” tumors on the latest scan were smaller than 5 mm, so Dr. Nelson thinks they may have been there before, and just “hiding” in the blank spots.
I asked Dr. Nelson to be my oncologist after that, on the spot. I think I caught her off guard with my decisiveness. She sent me to a podiatrist, who fixed my ingrown toenail. Yep. That’s what it was after all. To think I might be on chemo right now because of an ingrown toenail, if I hadn’t questioned the decision. It just goes to show that diagnosis isn’t an exact science. Dr. Nelson also put me back on 150 mg of Tarceva (the highest dosage), after working me up to it over a two week period. My subsequent scan and MRI both showed no change, which is excellent news. Changing doctors was the smartest thing I ever did.
But the story doesn’t end there. I may need to change doctors again, and not because I’ve lost confidence in Dr. Nelson. I haven’t. She’s a wonderful oncologist, and if you live in San Francisco, have Kaiser insurance, and are diagnosed with any form of cancer, please go see her. However, I need to find a good oncologist in Georgia, who takes insurance I can afford (which means something I can buy through the Exchange, and you’d be surprised how few doctors will take subsidized insurance plans here in the great Red State of Georgia. Or maybe you’re not all that surprised.)
You see, a whole lot has happened in the last few months. I wrapped up my law practice, put my client files in storage in California, and moved all my other stuff to my sister’s house in Georgia. I can’t afford to live in California on the amount I get from disability. The move was the hardest part of the whole ordeal. It required a Herculean effort to pull it off. Let’s face it – I have a lot of stuff. I have a lot less now, because Laura and I had a huge moving sale to unload some of it, some I donated to charity, some more I had a junk man haul away, and most of the rest is in my sister’s basement as we speak. You can accumulate a whole lot in 30 years, and boy, did I ever. Never again.
My sister, Kim, came out to California to help me pack in mid-March, right after the moving sale. Her boyfriend, Jerry, came with her, because he’s sweet like that. They arrived late on a Wednesday night. We worked all day on Thursday, packing. That night, we decided to get take-out from Jennie Low’s (Chinese), so we wouldn’t have to cook. We were too exhausted to do much of anything by that point. The next day, Kim was sick and in bed by noon, and I was sick that night and all day on Saturday. I don’t know whether we got a virus or food poisoning. Whichever it was, it was damned inconvenient. I was up all Friday night, going back and forth to the bathroom, and couldn’t get out of bed on Saturday except to go to the bathroom. I couldn’t keep anything down, not even water. Kim was so worried about me that she took me to the ER on Saturday night, and we were there until the wee hours, while they gave me fluids, anti-nausea medicine, and tests. (Later, they told me the tests revealed an e-coli infection, and I was put on antibiotics).
It looked like there was no way Kim and I were going to get the rest of the house packed up by ourselves, after losing all that time (Jerry had to go back to work on Saturday night, so it left just the two of us). Plus, we were both weak from being sick. But sometimes when things look the worst, something wonderful happens. In our case, the something wonderful came from some unexpected sources.
On Saturday, while I was delirious in bed, the Tree Man (Carl, who is a tree trimmer, and was given his nickname by his girlfriend) came by with a friend to pick up my old washer and dryer that he’d purchased during my moving sale. It just so happened that Carl’s friend, Mario, has a business hauling away junk. (I know! What a co-inky-dink, huh?) Kim learned this while chatting with him as they tried to figure out how to get the washer up the stairs. Kim got Mario’s number in case we needed stuff hauled away at the end of our packing. Did I mention my sister is a very smart woman? But then Mario said something that made Kim want to hug him. He told her about a woman he knows who’s a professional packer for residential moves. Seriously!! I’m sorry, but I just don’t think it was mere chance that delivered a man who hauls junk, with a friend who’s a professional packer, to our house at the precise moment when we needed both desperately.
Anyway, Kim hired Kim (that’s the packer’s name, too, and it was very confusing when both would answer to the name) to come help us pack. By some miracle, Packer Kim was available to help us on Sunday and Monday. I also had some friends who unexpectedly showed up to help, completely out of the blue. Bless them. With the help of all these angels, we were able to get everything packed. Sister Kim returned to Atlanta on Monday afternoon, and I was more or less ready for the movers on Tuesday morning.
By the end of the move, my friend and fellow writer, Natalie, called about bringing back some plastic bins I’d loaned her. I said, “No. Don’t you dare bring anything back into this house. But come over here and take some things out if you want.” She took my garbage can and a shredder. My good friend, Ruth (one of the packing angels), took a floor lamp, and my neighbor, Janet, took two small bedroom lamps. Lynne (another packing angel) and Sandy took two bookcases. Mario, the junk man, took a small cabinet and folding tables, and he hauled some stuff to the dump as well. I left shelves and garden tools for the landlady (which she was happy to take off my hands). I was ecstatic I wouldn’t have to pack any of it.
My stuff went in the moving truck, but there was still the matter of getting me and the dogs to Georgia. Laura had agreed to drive across country with me, Pacman and Baron. I looked into flying the dogs and shipping my car, selling my car and buying a used one in Georgia, and every possible option for getting me and the dogs to Georgia with a car I could use once I got here. But I read horror stories about dogs on planes, and there’s no way I would put my babies through that. I even considered buying a moving van (there were some listed on Craigslist) — driving it across country, and selling it once I unloaded my stuff in Georgia. Thank God I didn’t pick that option! Laura could tell you why that’s a terrible idea. Here’s a link to my travel blog, so you can see for yourself: http://blog.travelpod.com/travel-blog-entries/off2georgia/1/1395876951/tpod.html
Laura and I initially planned to drive across country on Interstate 80, which is the northern route, and goes through Truckee and Reno. But the day before we were leaving, there was a weather advisory that made us decide to travel south instead. We didn’t want to chance getting stuck in the mountains during a blizzard. I’m glad we went south, because we got to visit with my friends, Mary and Sally, in Jerome, AZ. Apparently moving across country is like being a contestant on Survivor – you have to be prepared to change your strategy at any moment. There’s an account of the Jerome visit on the travel blog, if you’re interested.
This is all for now. You’re caught up. I’m still kicking and stable. I’m dealing with all the side effects of the Tarceva – Bambi eyelashes and Groucho Marx eyebrows, brittle cottony hair that doesn’t grow in places, dry fingertips, fatigue, and rashes. I’m just happy to be alive and writing this for you.