The Three Rs…Radiation, Red, and Raw…

Sorry about the title, Little ‘Ole Me, but I have to tell it like it is…no sugar coating…Am I glad to be alive? Yes. Did I get to celebrate the holidays with my family? Yes. Am I grateful and thankful that I’m still around for all the good things in my life? Yes. Was 2007 a devastating, humbling, Hellish year for me? Yes. One of the purposes of this blog is to tell it like it is. Besides being informative to people who are interested in my personal journey and for people who might benefit because they or a loved one have cancer, the blog is an on-line personal, though published, journal. If you saw me in my daily interactions in my job as an assistant principal, would you suspect this other strand in my life? No. If you saw me in the evening with my university students, would you suspect? No. If you saw me with my family, would you suspect? No. Well, maybe because I’d be wearing a hat, and you could guess that I’m having some sort of hair experience. So, if my comments on the blog indicate that I’m depressed, wallowing in self-pity, or pissed off, then they are misleading [well maybe not so much about the pissed off]. Here’s the radiation story: I started my treatments on December 10th. The radiation equipment is a little intimidating with its one big, long arm that reaches out over you and can move to all sides of you. The noise it makes while moving and radiating can also be a little intimidating. It took me quite some time to figure out that I was being radiated in four different places. Although Dr. Dean probably told me that at my initial visit, I didn’t actually recall it. Most of the time, as I think I mentioned before, I kept my eyes closed to try not to think too much about it and just try to say rosary prayers. Actually, I found if I kept my eyes open, it didn’t go so well for me. When the long arm of the radiation equipment reached all the way over and prepared to radiate me from the right side and I looked up, I could see my reflection in the machine. I could see my one breast and the place where the other one used to be. I could see the green rays of light that all intersect at the “x marks the spot” painted indicator on my left chest. You see, if you keep your eyes closed, this can just be an experience that someone’s going through, maybe your body, but not the real you. If you open your eyes and see the reflection of the real you, it’s too much to bear that it’s you on this table with the mutilated body going through yet another procedure you never wanted to even know about, much less undergo. So, sorry Rhonda, but crying sometimes just happens when you least expect it; and seeing my reflection in the equipment is when it would happen to me. Sometime after the first couple of weeks, I asked the doctor how long my treatments would be. He really had never told me that. He had said, at my initial and only visit with him in his office, that we would go five weeks and then depending upon how the “wet sunburn” was doing, he would decide to further treat or stop treatment. When I asked him on his visit to the radiation room, he replied that the course of treatment had been determined from the beginning and that I was having a total of 25 treatments. Quantified, it made things easier. I could mentally tick off treatment days and know when I would be done. He warned me on each of his visits to the radiation room that I would start to see redness, burning, etc. I was doing so great at not seeing any change, I somehow thought I was going to escape that. I didn’t. By the last treatment on January 15th, I was well done. For a few days after that, it actually got worse…red, raw, itching, and now pealing. The only experience I had that resembled what I guessed he meant by a “wet sunburn” was one day, I thought a spot was pealing and when I rubbed it, the skin came off as it would with a blister, wet underneath. That sore spot seems to finally be beginning to heal, although I’ve had to keep a bandaid on it because it hurt when fabric rubbed against it. During one of the doctor’s visits in the radiation room, I think he did not remember me. He was skimming my file as he talked to me. He remarked about the lymph node involvement and then said that the cancer in the breast wasn’t all that bad. I wanted to say, “Didn’t you just look at me? Is that your definition of not that bad?” I didn’t say anything because I didn’t know what he meant by that comment, if anything. On one of my last treatment days, while I was still lying on the table, he looked at that area and then began talking to me. He said I could sit up now. That’s pretty funny, because there’s no way in the world I could pull myself up to a sitting position. Thank goodness, Danielle was still in the room and gave me her arm for leverage, as either she or Linda did every day at the end of my treatment. Speaking of those girls/technicians, I gave them both gift cards for Starbucks and Bath and Body Works since we had held several discussions about lotions, prompted by the gingerbread one I wore; and they both had a Starbucks cup with them every day. An observation I made about the radiation patients is that they were mostly men. Interesting? Mean anything? I don’t know. There was one gentleman who was always there in the same chair every morning when I came in. After the first day that I said, “Good morning,” we always greeted each other. As I neared the end of my visits, I asked him how many he had left. He was only on 20 something and had to go all the way to somewhere in the forties. Old pro that I was by then, I advised that it gets easier once you get past the halfway point. One day, someone came out to talk to him [I think maybe the person was filling in for the doctor, not sure]. After a couple of questions, he asked him about his stools. Hello!? Are there no privacy issues at all? Should a person be asked that question with a stranger sitting three feet away? Oh, well, as I’ve said before…so much for humility in the medical world. I’m beginning to heal; I’m pealing and finally beginning to hurt less. We celebrated my end of radiation treatments by going out to dinner last weekend. Kathi brought the little kids, J.J. and Ana. Susan, Kevin, and Jason came and John. After dinner, Kathi brought the two young grandchildren over to play games, and John came along. We had fun with games; and J.J. remembered the frozen cookies, so we made and ate green Christmas tree cookies. Why not? It’s only January…but it is a whole new year! My family has many exciting events to look forward to in the new year. We have two February birthdays. We have three March birthdays, two of them being quite special…J.J. will be six on the sixth, and Jason will be 12 on the 12th. Two April birthdays and Ana turns three in May, and, of course, the wedding in June. Also, for all concerned, Krista will be organizing a Team Kulesza for the Susan G. Komen Race for the Cure walk/run in Las Vegas on May 3rd. More about that as Krista pulls it altogether!

Happy, Happy Holidays…

Yes, the holidays were happy! While Teresa and Elliott threw away Christmas (see link to Teresa’s blog), I kissed 2007 good-bye; or maybe I cried 2007 goodbye. Either way, it was difficult, even with the happiness of the holiday season, to not have occasional thoughts of…this is my first Thanksgiving as a cancer patient, this is my first Christmas as a cancer patient, etc. It brings a new perspective to whether or not you’ve made the most of past holidays and what will holidays of the future hold for you…Teresa and Elliott came the last day of school before break, and I picked them up at the airport on my way home. Funny, but Teresa’s bags arrived and Elliott’s didn’t. How do two people get on the same plane at the same time, and one’s bags arrive and the other’s doesn’t? The airline gave Elliott a 6-hour window for delivery…sometime between 7:00 pm and 1:00 am. We decided to go somewhere nearby to eat so if they called Elliott’s cell phone, we could be back home in a couple of minutes. Chapala’s fit that bill. We almost got off to a rocky start; while looking at menus came the comment that I looked “radiant.” That must be the latest joke at the Senior Center or the Looney Tunes Bridge Club for when someone is undergoing radiation treatments. I quickly asked if we wanted to get this visit off to the same start as the last one with the memorable, “I liked you better when you were sick” comment. We all got past that moment, but it could have gone the other way. In retrospect, I think a cancer patient can have a sense of humor, even make funny/joking comments about her own situation, as this blog pretty much reflects. Sometimes, though, when the joke comes from someone else but it’s at the expense of the cancer patient, she may not find it all that funny. She could possibly even take offense. Think so? The rest of the visit was great. The next day, Teresa managed to choose a bridal gown with the presence of her three sisters and her mother along for the shopping…all of whom were happy with the final selection. The next celebration was John’s birthday, that same day, held at Jay’s house. Imagine John being 35 years old, who would have thought? Christmas Eve was at Sue’s. Unfortunately, John had to work; but everyone else was there. Unfortunately for me, John drew my name so I had to wait until the next day for my gift of two seasons of “24″…exactly what I asked for; and, just kidding, no big deal that I got it the next day. The grandchildren received all of their gifts from the family. I think two weeks later Ana was still saying, “More presents, more presents!” We had dinner, and everything was great. Christmas Day was at Jay’s. Every day that I go to work, I wear the damn wig. Oh, I know in the beginning I talked about how it was the same colors as my hair and close to the same style. Big deal! I hate that thing! I can’t explain why, I just do. When I’m not at work, for the most part, I don’t wear the wig. I’ve never figured out how to do the scarf thing so I wear hats, mostly baseball style, but different colors, etc. For Christmas, thinking it was just the family, I wore my silver baseball hat. No one had bothered to tell me that other “people” were coming to Jay’s, as well. I pouted when I realized others were coming and no one had told me and I would have worn the damn wig if I knew. I can’t really explain why, except this…People can know you have cancer [I prefer to think that I don’t have it any longer, as Danette pointed out to me way back in the spring at Goolsby), but when you wear a baseball cap and it’s obvious you’re bald, it seems to make more of an “I have cancer” statement. I don’t want anyone to look at me with sympathy or pity or whatever you want to call it when you see someone who has something that you’re sure can’t happen to you so you feel sorry for them. That’s why I would have worn the wig. Not to mention there are a couple of “people” who would be likely to show up at Jay’s that I’m not overly fond of…actually just plain don’t like them. Not the most Christian thing on one of the most Christian days of the year; and what about making the most of the holiday, considering the past year? Somehow, I got past the bad feeling; and the high point of the day was probably watching all of those adults play the Wii so that their arms were going to hurt for a week. Teresa and Elliott left the day after Christmas. From that point on, I mostly stayed on the couch. I accomplished almost nothing, except for one or two small projects. The more you sit on the couch, the more tired you get, and the more you want to sit on the couch. What a waste, but I must have needed the rest because I got plenty of it. For New Year’s Eve, Joe and I drove to Laughlin following my daily radiation treatment. We had lunch with his old friend Bill and Cindy, who once had Hodgkin’s. The talk was mostly about cancer and not very inspiring. For days after, I was feeling lumps under my arms and taking my temperature for fear I had pneumonia…all things that happened to Cindy. When we went up to the ballroom for the New Year’s Eve dinner, we were directed to a table. I didn’t completely dress up, but I went with the silver hat and other silver, glittery stuff. When Joe left the table for a minute, the lady one seat away said, “I love your silver accents.” I thanked her and then she said, “I see you’re going through something right now.” I responded, “Yes, but you still have to be jazzy.” I thought, “Oh, no, enough cancer talk for today, and you probably have no idea…” Instead, she said she’d had liver cancer 15 years ago and was a survivor. A little later, walking through the casino, someone was poking my back from behind. When I turned around, a lady caught up with me and while passing pointed to her hair and said, “It’ll grow back, see?” Here’s the thing about all of this…everywhere I go I meet cancer survivors. There hardly seems a family untouched by it anymore. BUT, let’s be honest…there’s a whole group of cancer people I’m not meeting. Remember that riddle about where do they bury the survivors?…in Canada or the United States? Of course, they don’t bury the survivors, but they do bury all those folks whose obituaries read…after a long, courageous battle with cancer…well, you get what I mean…My New Year’s Eve date didn’t stay up until midnight, but I stayed down in the casino just for the pleasure of hearing the countdown, seeing all those balloons drop, and hearing/seeing the happy people welcoming in 2008. For a few moments, though, it must not have made me happy because tears rolled down my cheeks as I thought about what 2007 had been like for me. In my heart of hearts, I know my year could have been a whole lot worse; and I could have not even been around for 2008. I’m very grateful that I could stand in the middle of a casino on New Year’s Eve and see the new year arrive. Maybe what made me the saddest was thinking about what the year had meant for Krista. Now, I don’t mean to slight any of my other children by saying that; but maybe because she’s the youngest and she went through everything with me (not that the others didn’t), I couldn’t help think about what I (not really me, but my illness) had done to Krista’s 2007. I know my cancer had a profound effect on all my children, and I’m not trying to diminish any of their feelings. I know they each had to find their role in my cancer; and they all did, and they all came through for me. I guess before all of this happened, I would have thought that Krista would have been perhaps too devastated to be of much help; but it turned out she was always there and always knew exactly what to say. She took me to the angiogram…that might have been the worst I was…on the way there telling her not to forget this and don’t forget that…like I was going to die during the procedure (which I pretty much thought I would). She went with me to the biopsy when I was still a babe in the woods as far as medical procedures were concerned. She spent the night in the hospital with me following the mastectomy. She went to the chemo treatment with me when I was crying in the parking lot before even going in….Yes, it was quite an emotional year for my youngest child; but as I said in her birthday message, she was my rock in 2007! I think a few tears was an appropriate enough way for me to usher in 2008. So, See Ya, 2007! Glad you can’t darken my door again! With the beginning of 2008, I still have radiation treatments to finish and a year of Herceptin; but that seems simple compared to what I’ve already done. We finished off my two week break with a celebration of Krista’s birthday at Macayo’s. Of course, it’s Teresa’s birthday, too; but we have to send her our greetings. Krista invited the family and some of her closest friends and Luke, whom I do believe has gotten the “boyfriend” distinction. That’s pretty big! I’m almost done with radiation treatments, and I will happily chronicle those activities in my next entry. Happy New Year, Happy 2008!

Herceptin Treatments…

Here’s what I know about Herceptin, the IV administered drug I will be taking for one year at the rate of once every three weeks. First of all, what is it? Herceptin is used to treat breast cancer in which cells have tested positive for HER2/neu gene or HER2 protein which stands for Human Epidermal growth factor Receptor 2. Yep! Here’s a blurb from the Web:
HER2 stands for Human Epidermal growth factor Receptor 2. Each normal breast cell contains copies of the HER2 gene, which helps normal cells grow. The HER2 gene is found in the DNA of a cell, and this gene contains the information for making the HER2 protein. The HER2 protein, also called the HER2 receptor, is found on the surface of some normal cells in the body. In normal cells, HER2 proteins help send growth signals from outside the cell to the inside of the cell. These signals tell the cell to grow and divide. In HER2+ breast cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens, too much HER2 protein appears on the surface of these cancer cells. This is called HER2 protein overexpression. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly. This is why HER2+ breast cancer is often more aggressive than breast cancer that is not HER2+.
Wouldn’t you just know that I had to have aggressive cells? I mean, after all, I don’t have an aggressive bone in my body, why cells in my breast?
Here’s what Herceptin does, another blurb from the Web:
Herceptin is called a targeted therapy because it targets breast cancers that make too much of the HER2/neu gene or HER2 protein. These cancers are called HER2-positive. Herceptin is also called an immune treatment because it is made of an immune system-like antibody that blocks the HER2 protein in cancer cells. Blocking the protein helps stop the growth of HER2-positive cancer cells. About one out of every four breast cancers is HER2-positive. HER2-positive breast cancers tend to be more aggressive than HER2-negative breast cancers. Herceptin is only given to women with HER2-positive breast cancer. Herceptin is effective in women with metastatic and earlier stages of disease. It can:

• shrink down and get rid of cancer that has spread beyond the breast to other parts of the body
• help shrink down a medium- to large-sized cancer in the breast before surgery

• reduce the risk of cancer coming back after surgery in women with medium-sized cancer (two centimeters or larger)
The first and third bullets apply to my situation. Here’s the saga of my Herceptin treatments:
During my visit with Dr. Manno following my “burning” ordeal with the first administration of Taxotere, he put in orders to start the Herceptin treatments, which he said would be once a week for a year. I called his nurse, Susan, when I had second thoughts about starting another drug because:

•  I still did not know what the effect of the reduced dosage of the next Taxotere treatment would be
•  I did not want to start a year long, once a week treatment 20-miles one-way from home at the Cancer Institute
•  I wanted to look into the possibility of having once-every-three-week doses
•  I wanted to look into having the drug administered at another facility closer to home, if I had to stay on the once-a-week regimen

So, with Dr. Manno out of the country, Susan and I decided to not start the Herceptin until she talked to him or he came back or I saw him next. However, every time I went for Taxotere, my orders still said to include Herceptin, which I would have to point out to personnel, never got started. My point in telling this is to show that somehow there was always a glitch in the records concerning me and Herceptin treatments. During my last Taxotere treatment with Mona, my favorite nurse who was once my least favorite nurse, she mentioned that Benadryl is administered through the IV before the Herceptin and that it is a precaution in case of an allergic reaction to the H drug. Mona also mentioned that sometimes she suggests to patients following a few treatments that if they haven’t had a reaction, maybe they don’t need the Benadryl. This sounds a little convoluted because how would they know if they were going to have a reaction if they always had the Benadryl first? As it drew close to the time of my first H treatment, nurse Susan told me to bring a driver because I would be very tired. I said I can’t be all tired, I have to go to work the next day. Susan said she didn’t mean the next day, she meant right then and there…that the Benadryl can knock you out, sort of, and you have to have someone to drive you home. After some thought, I called Susan back and asked if I could try having the treatment without the Benadryl. She checked with the doctor, and it was a go, except to have a back-up driver ready to come and get me if it turned out I needed the Benadryl after all. When I arrived for my first treatment, I told Mona that now I was a little nervous, that she had planted that seed about no Benadryl, and now I was worried. She said there was no problem that she would start the H, if there was going to be a reaction, it would be right away, she would stop the H, start the Benadryl, return to the H; and I would call my back-up to come and pick me up. Guess what? No problems with Heceptin. It’s quick because no Benadryl first and, so far, no noticeable side effects. You just gotta love Mona, don’t ya? So far, I’ve had two treatments, but at once every three weeks and no side effects, it’s a walk in the park. Also, my radiation treatment status is 17-down, 8-to go. I think the doctor is finally happy that the treatment area is starting to look agitated. He kept promising it would, and finally it’s beginning to show signs. Actually, more than anything, it just itches. I’m using 99% Aloe Vera Gelly from Whole Foods. Now, I have the laryngitis that’s been going around so since I can’t talk, I decided to write.