The GOOD, The BAD, and The UGLY

The GOOD…

J.J. slept over two Saturdays in a row. He had not been here for a sleepover since all this stuff started with me. I couldn’t have a five-year old over for the night while I was in the midst of surgeries, recoveries, and unpredictable side effects of chemo treatments. The first week we went to his soccer game and took him from there. We drove to Bonnie Springs. We rode the train, ate, and fed the ducks. When we got home, we made pumpkin-shaped cookies; and J.J. played Connect Four and Trouble with his grandfather. I had him read to me…he can read; and he wrote some sentences for me. I’m not that crazy about learning through decodables, but his sentences thrilled me anyway. He wrote, “The cat sat on the mat. The mat sat on the cat.” On another piece of paper, he drew the three lines, two solids and one dotted; and he wrote, “The fat rat sat on the T.V.” This seemed clever because he thought it through and used T.V. so he didn’t have to ask how to spell anything. I then gave him the sentence dictation assessment, and he scored 26/38. I think J.J. is just the greatest thing since, I don’t know what, I just think he’s the greatest thing! When we were passing the airport, he said, “Oh, the airport’s coming up on us.” I thought to myself that was a little backwards. After about a minute he said, “No, we’re coming up on the airport.” Wow, a five-year old thinking through what he said and then correcting it. I’m already impressed with him, but that was pretty good. At this time of the year, a lot of J. J.’s world revolves around football. It actually has impacted his math skills because he can tell you most scores if you ask in terms of touchdowns with the extra point and/or field goals and safeties. At one point during the day he was talking about places he’s never been. It took me a minute to realize he was naming football team cities…I’ve never been to Dallas; I’ve never been to Miami, I’ve never been to Buffalo. After the pro teams, he moved on to college cities. Actually, all things considered, he’s probably been to more professional football games than most kids his age, especially who don’t live in a city that houses a team. O.K., one last J.J. story. On the way home from Bonnie Springs, we told him what his options were for where he could sleep…since it had been so long since he’d spent the night…You can sleep with Grandma and Grandpa. You can sleep with Grandma, and Grandpa will sleep in the other bedroom. Or you can sleep in the other room and have it all to yourself. Not surprisingly, he said, “I’ll sleep with Grandma.” When we arrived home and got into the house, I realized something. “Oh, J.J., I don’t think you’ve ever seen Grandma without a hat or a wig on…well, here goes…” His response, “I’ll sleep in the other room by myself.” Gotta love that kid…who would sleep with a bald woman, if they had another option? That did not hurt my feelings in the least. You may have to be a grandma to understand this or maybe it’s just the Grandma/J.J. connection, but there is nothing in the world that child could do to hurt my feelings, make me angry, whatever…in case you couldn’t tell that already. The next morning when I handed J.J. off to my son after church, I could hear him as they walked toward the car, “Dad, you know Grandma wore a wig to church.” Also The GOOD…I met Donna for a Smoothie, and our conversation lasted three hours. Five years ago, Donna had the same regimen of treatments that I’m having now. She was actually in the clinical trials for the next drug that I will be taking. She has memories of many of the things I’ve been experiencing in the last few months. We have friends in common, and both of our careers include elementary teaching/administration and involvement at the university level. It was great to talk with someone I know who’s been through it all, is recovered, and looks and feels great. An ironic circumstance we share is that when Donna was diagnosed, she was the assistant principal for the same principal for whom I was working as assistant principal when I was diagnosed. CCSD may be the fifth largest school district in the country, but in Las Vegas, CCSD is a small, small world. The GOOD…I visited Goolsby last week! I went with a Harmon kindergarten teacher, Frank, so he could observe a Goolsby kindergarten teacher, Beth. Going back to Goolsby was like going home. It felt great to see so many people with whom I have such strong connections. I got enough hugs in the time I was there to last me for who knows how long. Now, here’s a thing about hugs. I always thought we needed three hugs a day for our emotional well-being, but now I’ve discovered… Virginia Satir, family therapist, through research has concluded: “We need four hugs a day for survival. We need eight hugs a day for maintenance. We need twelve hugs a day for growth.” When I was at Goolsby every day, not just since I got cancer, but before that, there were always enough hugs to go around. Here’s my problem…the only hugs at Harmon are The Harmon Hug, which refers to the students crossing their arms and hugging themselves when they’re in line passing from one place to another. This is just not working for me. So, I’m going to start hugging at Harmon. I’m going to start slow…I know I must be careful…touching in the work place, sexual harassment, etc. I won’t hug any kids; and I’ve downloaded “Proper Hug Etiquette” from The Hugs for Health Foundation website. Here they are…

Proper Hug Etiquette

also known as the

Rules to Safe Hugging

1. Always respect another’s space.
2. Ask permission before hugging.
3. A hug is a compassionate gesture, hug accordingly.
4. A hug is a gentle embrace, not the Heimlich Maneuver.
5. Be “in” the hug, don’t simplygo through the motion.
6. Happy Hugging!

O.K., so we’ll see how this goes. So far, Lety and I are hugging every day…it’s a start…

The BAD…There doesn’t seem to be any BAD. It’s as though there are no shades of gray in my life right now…there’s either OUTSTANDING, GOOD, or UGLY. So, we’ll skip the BAD and move on to…

THE UGLY… that would be what Bobbie and her family are going through right now. I love Bobbie. She’s the office clerk at Goolsby. She’s professional, smart, efficient, loving, and a great hugger! I’m not going to go into extreme details because I might not have them all exactly right. I do know that one day her husband was working on their cabin in Utah and felt some numbness in his hand and foot; and the next minute their lives were turned irrevocably around. Bobbie’s husband has a fast-growing form of brain cancer. They’ve been in San Diego since all this started. He’s had surgery and has begun treatments. They have two daughters, one starting college and the other in high school. I know they are a close, loving family. I remember Bobbie telling me how they have always been on the road for Thanksgiving because their girls play soccer and would always have to travel over that long weekend for tournaments. I don’t know what Bobbie’s going through right now…I don’t ever want to know what it feels like to know that someone you love has cancer. I can’t even pretend to know what her husband is going through either because cancers are all different; and treatments and prognoses differ from cancer to cancer. I do know that it’s very scary and also very sad that someone in their forties could be struck down so quickly and so severely. Knowing Bobbie and from everything I hear, she is keeping a positive outlook, staying by her husband’s side, fighting the insurance fights and hoping for only the best possible result. Right now it’s hard to imagine that my diagnosis was ninth months ago, and Bobbie was one of my biggest supporters. She could never have thought in her most awful nightmares that she would be going through this experience within the same year. I wish there was something I could do to be there for Bobbie now; but, as in so many cases, all we can really do is offer our love and prayers. So, if there are any extra prayers or good wishes out there, send them up for Bobbie, her husband, and her family.

Taxotere Times Two

The second Taxotere treatment went much better than the first. When I met with my doctor a few days before the treatment, I told him of all the things that had happened to me with the extreme pain and burning in my feet, my hands being burned from the inside out, etc. He lowered the dosage of the Taxotere by 50 milligrams, approximately 25%. He said I do not need any blood draws in between treatments, only the day of the next one. Some of the remedies for my side effects were: Benadryl for my hands, salt water for my mouth sores; and he approved of Eucerin Calming Cream for hands and feet. He also approved my request for a temporary handicap placard for my car, in case the pain came back in my feet again. Since I was having such a heart-to-heart with the doctor, I went ahead and asked him what would be next. He said that I would start Herceptin, and as a matter of fact, he would just start it with my next Taxotere treatment. Herceptin would be every week for one year. Now, I always knew that this was in my future, but I hadn’t thought that I would start it until I was finished with the eighth chemo treatment in November. Over the weekend I pondered starting a new drug, weekly at that, and I decided to call the nurse on Monday. I explained that I didn’t really want to start another drug on top of my second Taxotere treatment, not yet knowing if lowering the dosage would make a significant difference in my side effects. I was also concerned about a once-a-week treatment for a year…how would I fit this into a 7:30-4:00 job? The nurse said the doctor was out of the country, so let’s just not start the Herceptin and wait until he comes back; and, also, perhaps the Herceptin regimen could be every three weeks instead of once a week. When I went for my treatment on Wednesday, I felt better after talking to Mona, the chemo nurse, because she said she would take me as late as 3:30 for the Herceptin treatments. This sounded more doable. I know that my health and treatments are more important than my work, but I do have a job; and I don’t want to use all my sick days for treatments. Following the second Taxotere treatment on a Wednesday, the side effects were minimal in comparison to the first. By Saturday afternoon I felt unsteady with fatigue setting in. Both Saturday and Sunday I suffered from extreme fatigue and stayed home Monday, hoping for it to pass. On Monday, John came over, and he always makes me feel better. On Tuesday I went to work. I got off to a rough start feeling hazy and tired; but as the day progressed, I felt better. I took a brief nap when I got home and then made it through my 7:00 class. The next day was a much better day. My mouth started to act up, sensitive to heat with the beginnings of mouth sores; but I was functioning without feeling off center.

Taxotere Tore Me Up…

It took 12 days to recover from the first Taxotere treatment; that’s four more days than it usually took for the red devil poison to disburse. Because the nurses refused to treat me on the scheduled Tuesday, and I had to go back the next day…I went directly to chemo from school and then directly back to school for Open House. That was a long day. The next day, Thursday, I had my four o’clock UNLV class following my school work day, so that was another long day…but so far, so good. On Friday, I went directly to a memorial service after school. Still, not too bad. When I stopped at the grocery store on the way home, fatigue began to crawl all over me. I made it home, and then the next symptoms set in. The joints in my toes cramped up, and then my ankles began to hurt. This must be what they call neuropathy, I thought, described as numbness and tingling of the extremities. For the better part of the next 10 days, there was no numbness or tingling…my feet were on fire. By Saturday night the fatigue began to overwhelm, and I had the first of many fitful nights of sleep. The next day I was bound and determined to go to the Harvest Festival at Cashman Center. Susan and Krista went with me. I just had to have more jewelry and more quirky key people necklaces. I ran into Nikki, Jason, and Julie. As I stood talking to them, I wasn’t sure how much longer I could stand, much less, walk around the displays. It was great to see them though, and I hope they couldn’t tell what distress I was in. By Sunday night I was hoping that the pain would go away by Monday… no chance. By Monday my feet were still on fire, actually burning…it was difficult to walk…my stomach was messed up, my mouth began to hurt from developing mouth sores, my glands were sore, the top of my head hurt, my chest hurt, and on each outer side of my mouth in the corner crease was a slit. I don’t know how I made it to my 7:00 class on Tuesday, but I did; and I presented all the material. Every step from the car to the classroom and back again was extreme foot pain, like nothing I’ve ever experienced before or that I can adequately describe. By Wednesday my hands were burning from the inside out, along the outer sides running along the palms, my hands were on fire. I called Susan, the doctor’s nurse. She said it was all to be expected, that there was another lady on about the same schedule as me experiencing the same symptoms. I guess that was supposed to make me feel better. “You are not alone in your side effects, extreme fatigue, burning feet, burning hands, numerous pains, etc. Someone else has it too; you must be all right!” Eventually, the burning of my hands spread across the tops and over to the thumbs. Ten days later on the 15th I had an O.K. day. I went to pick up Zoe, Krista’s dog, for a sleepover. Since Luke was coming by to pick up Krista, I stayed to meet him. I hope I didn’t scare him away. I had a good day and night with the lovable, cuddly Zoe even though my hands were killing me. The next day was not so hot; I was back to fatigued again. I drew sketches in my journal of the locations of all the burns on my hands. Although my hands continued to hurt and then eventually peeled, the 12th day following chemo I felt like myself again, whoever that is these days. Needless to say, I had much to discuss with my doctor when I returned for my appointment that preceded my second Taxotere treatment. More to come about the second treatment and other things the doctor has planned for me. Aside from everything else, I’m so eternally grateful for my understanding and supportive family and the friends who keep in touch and keep up with what’s going on with me. Susan and Krista accept when I can’t talk on the phone or even return their calls. One time when the phone rang, and I was too sick to answer it, I could hear J.J.’s little voice talking to his grandfather. I just cried that I was too sick, tired, weak to talk to him that day. All the rest of the time, though, just his voice on the phone brings me the greatest joy imaginable. The other day when, once again, I was trying to pull out of post-Taxotere, John insisted on visiting me. That 34-year old man had to sit right next to his mom on the couch, and he kissed my bald head. (Could there be anything more endearing than that mother-son experience?) By the time he left, I was almost me again. To my friends who email periodically or call and want updates, I’m truly grateful to have so many people who care. For the few people in my new school who are truly aware of what is going on with me, I’m grateful for their caring; and if I need to I can talk about my latest escapades [treatments, burns, pains, etc.] So, the old roller coaster from way back on my blog…I’m still on it. I’ve been up and down those steep climbs a few times now; and I don’t like it. Although today I was joking with Connie and Patti about all the money I save on hair products, shaving gear, etc. would you like to put on your fake breast, draw your eyebrows on every morning and put your fake hair on before you go out in public? Hope you never have to find out….