Saturday, August 31, 2013

Rollercoaster Ride

After seeing Dr. A.J. earlier in the day, I had an afternoon appointment with my oncologist Dr. Moss. The appointment was to check my incisions to make sure they were healed and to ensure that I was ready to begin chemo as scheduled on August 29. Also, Layla, the nurse, was going to explain the chemo procedure, the rules, what to eat, drink and do on chemo, what not to do, the side effects, the drugs I must take to lessen said side effects, and get a tour of the chemo infusion room.

I had a bad feeling that chemo would have to be postponed. I was right. They rescheduled for 9/5. Don’t get me wrong, I’m not overly anxious to have poison pumped through my veins, increase the likelihood of dozens of future diseases, and lose my hair. I needed to get this ball rolling, for several reasons. First of all, I want to put this nightmare behind me as soon as possible. Secondly, I knew that my simultaneous mastectomy/reconstructive surgery couldn’t be scheduled until about four weeks after chemo was over and I REALLY, for reasons I won’t discuss now, NEED to have everything finished and healed in six months (by Feb 8). Period. Lastly, I REALLY wanted to have that mastectomy by the end of the year and save ourselves $6,000 in out-of-pocket expenses that start again on January 1! That’s a semester of Jordan’s UK tuition!

I remembered the first time I met Dr. Moss (who is affiliated with St. Joe Hospital) and she was explaining two different types of chemo regimens. One of them seemed to be the basic 12 week protocol with infusions every three weeks. Four total. The other was called the Dose Dense regimen which included eight total infusions every other week for 16 weeks total). It’s highly toxic (way more dangerous side effects than the 12 week-er). A dose dense recipient has a 1 in 100 chance of developing leukemia as a result of choosing this cocktail (I didn’t know this earlier)! Now, remember, she said this would probably be her recommendation BEFORE she saw the results from my surgery pathology report. She also had recommended radiation because, the last time I saw her, she didn't know I had decided on a bi-lateral mastectomy.

Dr. A.J., my surgeon, who is with Central Baptist, read my pathology report to me, and confirmed that, because I’m having a bi-lateral (double) mastectomy, chemotherapy and two of the four lymph nodes removed were non-cancerous, I didn’t need radiation. This is the standard of care recognized by most all doctors at CBH. This thrilled me, of course, because radiation is 5-7 weeks of daily visits to Highlands Regional or Pikeville Methodist Hospital. I quickly posted the good news on Facebook a week or two ago. Since you’ve probably seen my previous posts about these hospitals, you know that the idea of having the area only a few inches from my heart radiated by one of these people sends me into a full blown panic attack. At the same time, I realize that realistically, I can’t move to Lexington for six weeks for 15 minute a day treatments.

Walking into the waiting room at Dr. Moss’s office, my left breast was still almost double the size of the other one. She called me back and went over the pathology report I had previously faxed her. She said that because one of the two positive lymph nodes that Dr. A.J. removed had cancer cells which had extended beyond the lymph node, she recommended radiation. Again…tears. She recommended that, at the very least, I speak with a radiation oncologist. One could come by and talk to me during one of my chemo infusions. Fair enough.

She then wanted to examine me. I still had that hideous drain with the huge needle pinching my armpit. I couldn’t lift my arm at all, so the sweet woman who prescribes poison, helped me on and off with my shirt and bra. If you ever want to lose all modesty, get breast cancer. She gasped when she saw the shrinking, fading eggplant. “Oh, you should’ve seen in about 10 days ago.” I, of course, grabbed my phone and scrolled to the two pictures that, I’m convinced will someday make it into the big hardcover Guinness Book of World Records 2013. I can see the hologram “Guinness” logo on the cover page next to the $13.88 price sticker at Walmart.

“Oh, Ann, this is not normal. You know that, right? Before we start chemo, this has to go waaaaaaaay down.” I mentioned that they already drained almost a pint of fluid. She said, “I’m sure you have at least that much more in there now.” Let’s see what happens in the next few days.

I mentioned the 12 week chemo vs. the more toxic 16 week protocol. She believed that although the shorter regimen (which also doesn’t include the Adramycin) increased my chance of recurrence 3-5%, it would still be very effective AND decrease my chances of worse side effects down the road. She said, “…and without Adramycin, you don’t need a port.” I hugged her neck, got lipstick on her white lab coat, and almost kissed her right on the mouth. I marched right out of that exam room, drainage tube dangling, and headed for the conference room to meet my posse for chemo class. This time, it was Jeff, Liz, Jordan, and Oriana. Lauren would show up in time for the chemo room tour after work. The nurses always ask if they can speak freely during these conference room visits. Jordan has heard way more than a 21 year-old son should hear about his mother’s breasts. I have, however, refrained from showing him those Guinness World Record photos. He always loved those books, so I’m sure he’ll see them soon enough. It’s always a rollercoaster ride at these doctor offices: No radiation necessary (Yay!), (Worst bruising/swelling I’ve ever seen in 20 years!- huh?), (Shorter chemo regimen/no port necessary-Yay!), (Radiation needed after all-WTF?)….I’m emotionally exhausted and we’re just two months into this!

Layla brings out a book/workbook titled “Chemotherapy and You”. I felt my stomach churn and was glad to be sitting. After signing my life away, maybe literally, Layla took us on a tour of the chemo infusion room. There were about ten comfy recliners, with IV poles beside them. There was a fridge stocked with food and drinks (Jordan would love that) and some seats for friends, posse’s and entourages. It was as good as it could be under the circumstances. I got a lump in my throat imagining the patients with no friends to sit beside them. As soon as I walked in the infusion room, I recognized a familiar face. Then came the panicked feeling I get if I ever forget a face or a name. “I’m Lesa Taylor.” Then it hit me. OMG! This is the amazing woman I’ve been chatting with on Facebook for weeks! Just days after my diagnosis, this total stranger reached out to me and comforted me with her story. I recognized her pretty smile but her hair was different. It was brown but had been blonde in her FB photos. She was diagnosed a year ago with stage III breast cancer. She’s around my age with younger children. During the time of her diagnosis, her son collapsed and she had to spend weeks camped out at the hospital taking care of him. Meanwhile, she was terrified of this cancer growing inside her. They say that God doesn’t give us more than we can handle, but…well…Sheesh. The great news? Her son is fine and she’s cancer free. That day, she came by to visit the infusion nurses who took such good care of her. Actually, I think God sent her to be there with me that afternoon. We hugged, cried, she showed me the ropes, told me I needed to write a book, and I smiled for a few minutes. What a gift.

Just minutes before, I said to Jeff in the car, “I can’t believe I have cancer. I just can’t believe it.” He said, “I know. I can’t believe it either."

It’s as if I’m waiting for my loved ones to poke their heads through my open bedroom window, and wait anxiously for me to wake up from the nightmare. I have a washcloth on my forehead and recognize all the players in this eight week long dream. “It was so real. Pointing to all the people in my life these past several weeks…. ”YOU were there...and you...and even you, pointing to Professor…Dr. A.J., with his Tommy Bahama model hair. He says in his slight accent, “She seems all right now.” He pokes his head inside my window. “You certainly gave us a quite a scare.” I look incredulously at this man whom I remember to be a magician, of sorts. Then my surrogate mother, Liz, puts another washcloth on my forehead, “Wake up, honey. It’s me. Liz. You've just had a really bad dream.”“No. But it wasn't a dream -- it was a place. It was doctor’s offices and hospitals and nice messages on my computer, and phone calls, and I met the most amazing people. And you -- and you -- and you -- and you were there!

Jeff, the smart one with the big brain, says, “Oh, we dream lots of silly things…….” 

"No, honey, this was a real, truly live place. And I remember most of it was awful ...but some of it was beautiful. But just the same, all I kept saying to everybody was, “I want to go home. And they sent me home. (Enter Buddy,who hoists all 90 of his arthritic pounds on my bed.) Oh Liz, where are my ruby slippers? I want to go home!

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