Imaginings, Anxiety, and Panic…

I had another Herceptin treatment a couple of weeks ago, and during it I managed to work myself up into a tizzy [anxiety, panic attack]! First of all, I forgot to bring anything with me to do…no Game Boy, no book, no journal, not even a piece of paper to write on. All of that occurred to me as I was leaving work a half hour early to get to my 4:15 appointment. As I was leaving and Robert heard me say I hadn’t brought anything with me to do, I heard him call out, “How long are you going to be there?” Knowing how his mind works, I skedaddled out the door before he could give me some work to do. Even though the treatments are not long, it was upsetting me to not have brought anything to do. I don’t have the Internet or any games on my phone; and I figured I couldn’t call and talk to anyone throughout my treatment, given that it was still working hours for most folks. I decided to chance running in somewhere to grab a quick magazine, crossword puzzle, or Sudoku book, hoping it wouldn’t cut too much time off my drive. I chose Circle K. What a mistake! The only thing for sale to read in there were magazines geared to purient interests…not an InStyle, InTouch, People…nothing! When I arrived at the Cancer Institute’s third floor I sought out their magazines. All right! A People and a Readers’ Digest…haven’t seen one of those in years. Just before I was called in for the treatment, I began to browse People. It appeared to have some ads in Spanish. No, it appeared to be entirely in Spanish. I guess I missed that Espanol sign on the front cover. I guessed the Readers’ Digest would have to do. After being weighed on the scale [that tells nothing but lies] I was led to an infusion area, which was actually crowded. I surmised that since it was the end of the day and most of the nurses go home, leaving only maybe two to finish off the late comers, they put everyone in the same area. It’s not as if it’s claustrophobic, it’s just better if every seat isn’t taken. How can you tell who’s the patient and who’s the guest? Well, other than the obvious things to look for, the patient sits in the reclining chair, the guest in the regular arm chair. Mona wasn’t there. You know, I am used to her now; and I trust her. Joyce would be my nurse that day. I trust Joyce, too. I asked her if Herceptin was my treatment with no Benadryl. She replied that was what was in the bag. She didn’t even have to draw blood. She said that I wouldn’t need that so often now. Great! Another milestone. She got my IV going. I sat back to read the Digest. From the Table of Contents, I selected two articles. One was about a man who took very ill, very quickly while on vacation with his family. He nearly died from some rare condition, and the story was pretty ugly. The next article was about an 18-year old who died from Leukemia. One of his last requests was that his mother go on to be a nurse, which she had not actually thought of before. She did, and she went back and worked in the same cancer ward where her son had spent so much time and finished his life. I know how to pick articles to read, don’t I? A couple of minutes after I got started, Joyce came back to ask me routine questions that the nurses then go enter into the computerized charts. They always want to know about your bodily functions, etc. Then she asked if I’d had any numbness or tingling in my feet. I replied that I had recently taken up walking and that sometimes at the end of the mile, I would experience a little of that. She seemed to think nothing of it, and went away. I swear, as soon as she left, my feet went completely numb. Oh, I know it sounds funny now; but it surely wasn’t funny then. Joyce and the other nurse were so busy, I couldn’t really catch either one of them to ask about my numb feet. Since everyone was sort of jammed into this one area, I especially didn’t want anyone else to hear me ask [in case it sounded stupid, which it most likely was]. The more I concentrated on my numb feet, the more numb they felt. One foot at a time, I would press the ball of my foot on the floor and move it around in circles; that only helped a little. The more I thought about it, I decided the numbness was from the drug. There’s the tizzy part…I worked myself up into something ridiculous. Finally, Joyce got close enough and the crowd thinned out enough that I motioned her over. I said, “Joyce, I know this is probably nothing, but ever since you asked me about numbness in my feet, they’ve both gone numb. Can it be from the drug?” Joyce replied that she was sure it wasn’t and said, “Oh, look, you’re done. Let’s undo this and get you on your way.” She did ask if I was having any difficulty breathing, which I wasn’t, so I left. My feet remained with no feeling all the way home and then some. Finally, after twenty minutes to a half an hour, I got the feeling back in my feet. Lessons learned: 1. Don’t ever go to treatment without your own reading material, Game Boy, or journal again. 2. Don’t let your imagination take over your mind. 3. Don’t let panic get as far as an anxiety attack. 4. Don’t read articles about horrible medical conditions and death from cancer while you have an IV in your arm. 5. Lighten up. Everything’s going to be all right.

Dear Julie,

As you noticed in my previous Herceptin entry, I did get laryngitis not too long after my first two treatments. I had not thought about that being a side effect from the drug. At that time of the year, just about everyone is sick in an elementary school; and many of the staff had one form or another of laryngitis. I just figured over the holidays that it was my turn. If, as you suggested, it was a side effect, it has not lasted. Along with whatever caused the laryngitis, though, I had a cough for quite some time. I’ve only recently stopped carrying cough drops every where I go. I’m surprised that your treatments are three times a week, as opposed to mine, which are once every three weeks. I haven’t seen my oncologist since I began the Herceptin treatments, but I don’t think I’m experiencing any side effects from it. I am so pleased to have heard from you, all the way around the world from me. I hope I’ve been of some help. Please, let’s continue the dialogue; and I wish you well in your recovery from cancer.

Dottie

One Year Anniversary…

One year ago today, we renewed our vows with all of the family present, even including the snow-bird Finers (Susan’s in-laws) from Iowa. One year ago tomorrow, I found a lump in my breast. Hmmm…which anniversary should I celebrate? One whole year; it’s unbelievable! Eight chemo treatments, 25 radiation treatments, a variety of surgeries and scans, and a handful of Herceptin treatments. AND, here I am, family intact, me intact…Did I miss much? Yeah, about a third of Ana’s life when I couldn’t be much of a grandmother to her…a lesser percentage of J.J.’s life because he’s going to be six and we already had a history together. I didn’t miss any holidays or celebrations or probably very many good times, really. I transferred schools and work with two of my very best friends, Robert and Laura, and with a bunch of new friends and mentees (my word for those who are mentored). My new job is four miles from home, as opposed to my last, which was twenty. We’re planning for a wedding and a walk in the Race for the Cure. My radiation area is pretty much healed. My eyebrows are close to all the way back. I even have a few eyelashes. I had to shave my legs and armpits. My hair is growing back, not red and curly as I had hoped, but white and fly-away…but you can’t have everything, can you? Life is good! Happy Anniversary! Amen!

 Team Kulesza…

Team Kulesza is official for the Susan G. Komen Race for the Cure in Las Vegas. Mark the date, May 3, 2008. Let’s make this a true family event. Bring your children and your spouse or significant other, and we’ll all walk for the cure. As we approach the date, we’ll decide on a location to meet. To join, go to the following website and search for Team Kulesza: http://www.komensouthernnevada.org/Stay tuned for updates…

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 bef
ore 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.

Will I Glow in the Dark by Christmas?

One week of radiation under my belt…well, not exactly under my belt, if you know what I mean. A few weeks ago I had an appointment with my radiation oncologist. I didn’t like him at first, but by the end of the visit, I thought he was all right. I probably didn’t like him because he brought up all bad memories. He started from the beginning…so you found a lump in your breast? And then he ran through everything…the number of lymph nodes involved…all the gory details that I haven’t thought about in a long time. Doctors like to tell you stories about other patients. Dr. Dean said that there’s almost no reason to take time off work while you’re undergoing radiation. He highlighted this with a story about two cocktail waitresses, both from the old Desert Inn. First, he treated a young gal in her twenties. She went through radiation without needing to take even a day off. Then an older gal [I think he said in her seventies...must have been well preserved] came to him for treatment. She wanted a note to get her off work. He said he couldn’t do it, that it would be age discrimination if she couldn’t work, but the young one could. Point well taken…radiation’s no big deal. This week I started my treatments on Monday. I go early in the morning before I go to work. I was a little nervous and apprehensive the first day. The two girls set me up, drew all over my chest; and Dr. Dean came in for a moment or two. The treatment itself only takes minutes. They said the first day is longer than most days because of the first-day prep. They’ve been right so far. I’ve gotten to work quickly every day. Thank goodness that I’m getting my treatments near home and school. Here’s how it works. I can’t wear my earrings or necklace; and I don’t want to wear my wig, pressing it down on the table, etc. There’s a tiny little dressing room, if you could call it that. There’s no mirror, so here’s what I do. I carry my jewelry and wig and leave them in the car. When I’m finished with the treatment and go to my car, right in the parking lot I change my hat up for the wig. I hope for the best as to how the back of it looks since I can’t tell. Once I get in traffic, I try to decide if I have enough time at each light to get an earring on and maybe put the back on it at the next light. Somehow, I’m almost together by the time I get to school. On the second day when I went into the dressing room, I noticed that the transparent shoe hangar on the wall had my last name on one of the pockets. I told the girls (technicians)…just what I always wanted…my own private, labeled holder for my medical gown. Also, on the second day, I asked about deodorant under that arm and/or lotions. They asked if they had given me the handout on skin care the day before, which they hadn’t. This answered some of my questions. During the day on Monday, I had what looked like marker all the way up on my neck. One or two people mentioned it to me, but I just said that I’d lost control of a marker…that seemed quite believable to teachers. On Tuesday, I mentioned the marker all over my chest to Tina, and she said alcohol would take it off. On the way home, I bought alcohol; but it was tough going to get the marker off. The next day I asked the technicians about that; and, once again, they had forgotten to give me something…little pads that take it off. They said it’s actually paint. Lying on the table for the first treatment, I was thinking…Oh, please let this be a good day for these girls (technicians). I remember thinking that when I used to go to the hairdresser…let this be a good day for her…you don’t want to be there on the day she’s had a fight with her significant other or her dog was run over. Can you imagine the difference between a bad hair cut, from which you can quickly recover, and the possibilities of radiating the wrong section of your body, for example, your heart or other vital organ? It puts a bad haircut into perspective. On Tuesday while lying on the table, one of the girls, out of the blue, mentioned that this was Mike, a whatever technician who would be checking on my skin each Tuesday. There’s no time for modesty while you’re completely exposed to whoever walks in. You might as well just get past it, because there’s little you can do about it. Most of the time I just keep my eyes closed, so I don’t know who’s in the room; and I don’t much care. I just want to get through the treatment and go on with my day. I mostly just try to say decades of the rosary while I’m lying there. Oh, it’s not all that comfortable. You lie on a completely flat table, but they do put something under your knees. There’s a sort of head-rest, and I have to turn my head to the right to avoid the rays shining on my left side. Both of my arms are above my head, and there are two grips to hold on to. My elbows are flat. The first day, I hardly thought I could keep my arms in that position much longer; but since then, it’s been faster and more tolerable. Thankfully, someone gives you an arm to grasp so you can pull yourself up when you’re done. I’d be there for the duration without help. Another patient comes in around the same time I do, and we talk when we can. It’s only for a minute or two because I get called in; and when I’m done, she’s on her way in. She told me she’s 73. I would never have believed it. She looks great for her age. She said her daughter got breast cancer first, and she was going back and forth to California to help her; and she got cancer herself. See? there are much worse scenarios than mine. Will I glow in the dark by Christmas? I hope so; I’m working hard on it. That’s a question I posed to Patti the other day. She was standing up on a chair in the testing cupboard that’s outside my office. I couldn’t see her so I didn’t know she was in a precarious position. I just called it out to her. She said she almost fell off the chair, but she got down and came and gave me a hug. By the way, about hugs…my hugger, Lety, left Harmon and went to work in a middle school. Now, I’m back to hug training again. Superna, who’s transferring from the library to the office, is definitely going to be a hugger. Also, there’s Patti and JoAnn and Sherrie and Tara. I’m noticing a couple of other possibilities so I’m still working on the hugging thing and adding members to the club. The holiday season seems to soften up even the most tense, so random hugs are easier to come by at this time of the year. I saw Donna again this week, and that’s always great for me because she’s such a solid survivor. She looks great, and she says eventually this all becomes memories. Won’t that be great when I have to read back through this blog, if I will ever care to, just to remember what cancer treatments were like? I haven’t yet told about my first Herceptin treatment so I’ll get to that next time. In the mean time, if you see a lady with reddish, blondish hair or no hair but a hat that says “Bad Hair Day” tearing through “Tarjay” or a mall; and she appears to radiate glow-in-the-dark markings and Xes on her chest, just say, “Happy Holidays” because that’s me!

Crying, Cookies, and Caricatures…

Crying…What seems like ancient history now, last April, I wrote on this blog the following comment about crying…”I’d like to cry; but there are not enough tears in the world to cry about this…so why start…” I still feel the same way, but sometimes tears show up, planned or not. When does this cancer patient cry? In the shower, no not about my body or the mutilation of it, but about whatever thoughts I might be having at that moment. Crying in the shower is good. The water’s running anyway. You don’t have any make-up on. Best of all, no one can hear you. And if they do, they can ignore it or pretend they didn’t hear. Right when you go to bed…that’s a good time to cry. Again, no makeup, not bothering anyone; and you can just go to sleep when you’re done. When I hear about someone I know or a loved one of theirs who has cancer, I can’t help but cry; because I know that the effect on everyone in their family is devastating and that they have the battle of their lives ahead of them. Mostly, I try to stick to crying alone. It’s better that way. In my job, I have people cry in front of me often, mostly adults but sometimes kids who are in my office because they’re in trouble. It’s always hard to know what to do when an adult cries, but that’s someone else’s tears, not mine. I don’t like to put anyone in the situation of having to deal with my tears; I think crying is personal and introspective. Most recently, I almost cried…when talking to Patti about her daughter who had breast cancer at 25 and now is saddened, at 29, to have to wait years to start her family. But, fortunately, Patti and I were able to get past the moment…I said, “Don’t get me started; I could cry all day.” And we moved on with our work. I almost cried in front of someone last week, but I held it back. I was on the table to have a CT scan to prepare for radiation treatments. Mike, the technician, was a really nice man and was dealing with what I’m sure he’s very accustomed to…people under stress. I told him I was having some anxiety, and he told me to think about my breathing, that the slower you breathe, the less anxious you will be. Good advice. I almost cried when I told him that it’s just a little difficult to have just finished chemo and to now be back on a table again preparing for another adventure in treatments. Somehow, I held the tears back; and I survived the scan. I imagine that each person’s tolerance level for holding back tears is different. I think mine’s pretty high, but I feel that one day the dam’s going to break; and whoever’s around me at the time better hope that Noah’s not far away. It’s going to take more than a rowboat to escape the ocean I’m holding back.

Cookies, a great comfort food. Cookies can remind you of so many things. Right now cookies make me think of J.J. Whenever he comes over, we make cookies. You must be guessing that I buy the kind all cut out for you to just put on the cookie sheet and bake. We made pumpkins and ghosts for Halloween; and now we’ve made an assortment of Christmas shapes. Sometimes we frost, and sometimes we don’t. Five year olds tire of carefully decorating with little dots for buttons and eyes on the snowmen and little strings of color to show lights on a tree. After a certain amount of time, a five year old, just lets the frosting rip on one of the shapes. Guess which cookie gets eaten first? Of course, the one loaded with frosting. The only difference between a five year old and an adult is that the child does what he’s thinking about, while the adult thinks the same thing but holds back with some silly sense of decorum. Cookies also remind me of years ago when I was a stay-at-home mom. In those days, I really created the cookies. Mixed up the ingredients, rolled out the dough, cut it with a cookie cutter, made the frosting. Yikes! What a chore that sounds like now. Also, long ago I had a recipe for cookies I made every Christmas season. I know I made them with chocolate and sour cream and then decorated them with chocolate frosting and red and green sprinkles. Probably my fondest memory of baking comes from when I was a child. I grew up in my grandmother’s house. She had a pantry, not what is commonly referred to as a pantry now [a cupboard with shelves]. I mean…she had a pantry! It was a walk-in pantry. There were a million good things stored in there on shelves and in drawers. Plates, bowls, cooking utensils, spices, etc. When I was very small, I used to stand on a bottom drawer next to my grandmother while she prepared doughs and other stuff for baking. She made great pies, and she made donuts very often…just dropped them into a steaming bucket of oil, fried them, and took them out to drain and cool…but not for long before someone ate them. My grandmother was a gentle person. I wonder if my grandchildren will ever describe me that way??

All right, caricatures…Here are some Dictionary.com definitions:

A picture, description, etc., ludicrously exaggerating the peculiarities or defects of persons or things.

A representation, especially pictorial or literary, in which the subject’s distinctive features or peculiarities are deliberately exaggerated to produce a comic or grotesque effect.

That’s what I am right now. I am a caricature of myself. The wig…yeah, it’s something like my hair used to be…sort of red, sort of blond. But the hair is so thick. Women my age just do not have thick hair like that, well maybe some, but I didn’t. To me, the wig makes me look ridiculous, unreal. The damn eyebrows…now, they’re really a riot! To draw them on, there’s not even a hint of where to start. I have no memory of my own eyebrows. I know they weren’t very long, certainly not arching way over and past the eyeball. Every day’s a new adventure in drawing on my eyebrows. In the end, though, they are made of pencil, not hair. So, between the wig and the eyebrows, I am a caricature of myself. Oh, sure, Thank God, my voice is still the same, my brain is still working, and I’m still the irreverent person I managed to develop into over the years; but I do not look like I’m supposed to look. Speaking of irreverent, I remember once saying that I was slightly irreverent; and someone who knew me well said, “Slightly?” Anyway, people who didn’t know me B.C., don’t know the difference, which is pretty funny isn’t it? They actually think I have thick reddish, blondish hair. They probably think that I’m a little quirky for my age and that I like to draw on my own eyebrows. I think people who have known me for awhile look past the caricature features and just see me. For each and every person, you have to face yourself in the mirror every day. You have to look at weight gained or lost, wrinkles showing up, eyebrows that need plucking, other unwanted facial hair or growths, happiness or sadness; but what you see is you. When you finish your make-up and your hair, you have accentuated the positive and minimized the negative. You have enhanced your image to something that pleases you and you believe will please others. When I finish my make-up, draw on my eyebrows, and put on my wig, I don’t see me in the mirror; I only see the caricature of me.

“I Liked You Better When You Were Sick.”

In case it seems as though life is all sunshine and roses now that I completed my final chemo treatment, the above comment said to me the other day pretty much negates that bright, flowery thought. Doesn’t it?

Oh, yes, I did have my final chemo treatment. It was a special present to me since it fell right on my birthday. My family insisted on celebrating that very day so that we would have a double celebration. We all met at Susan and Kevin’s for dinner. For my gifts I received two tickets to Bette Midler for when she takes over for Celine Dion at Caesar’s. There was also a gift certificate for dinner at one of Caesar’s restaurants so I could have a great night out in a few months. A special gift from J.J. was a $50 gift certificate for Target (pronounced by him as Tarjay), which just happens to be his favorite shopping place?

I thought the visit to my oncologist (which immediately preceded my chemo treatment) was very positive. Krista went into the doctor’s office with me. He thought it was funny when I asked him to “outsource” me to a radiation oncologist on my side of town for the next step in my treatments. This is because radiation tends to run every day for approximately six weeks. If I can have the treatments near where I live and work, it won’t interrupt my day as much as driving 20 miles one way to the Institute for the daily treatment. I had a list of doctors from the closest treatment center, and Dr. Manno named three of them from which I could choose. Needless to say, it required a large volume of phone calls, but I have finally ended up with a consult appointment with a doctor not far away. Along with radiation treatments, I also get to start on my next drug treatment, Herceptin. This I will get to do every week for a month and then taper off to once every three weeks for a year. My teeth? Yeah, I can finally have dental work done again and get my teeth cleaned. Hair? Yeah it’ll start growing back…Dr. Manno said that three weeks after my last chemo, my body will be looking forward to the poison it’s been receiving every three weeks for five months. When the poison doesn’t show up, my hair follicles will start looking around and wondering if they should start growing again. I hate wearing a wig, but more than that I really Hate drawing my eyebrows on every day. I asked the doctor if it was normal to feel a little scared as you near the end of your treatments, and he said it can be because the patient begins to feel as though they’re being cut loose, not going to the Institute so often, etc. I wouldn’t say I feel scared necessarily, but I feel a little strange, coming to the end of the chemo.

Speaking of the last chemo treatment…it was uneventful. I was tired on the weekend (predictable) and then the only way I can describe it is “off center” for the next couple of days (also predictable). It’s a funny kind of inside nervous feeling of being not quite focused, not quite centered, not quite yourself. Since I had planned large chunks of staff development day, the sixth day following treatment, I was a little concerned about how I would pull that off. Two of the people on my team know I have treatments, and I finally told the other two, without giving any details; and I said I was hoping I would be myself by Tuesday…if not in the morning then I should at least be back to normal by afternoon. That turned out to be exactly right. I was shaky in the morning and pretty good by afternoon. My team and Robert insisted I was doing great and that no one could tell there was anything wrong. Everything seemed to go very well.

Teresa came for the weekend. I was so looking forward to her coming. She and Elliott are going to Reno for Thanksgiving and then Christmas here…an every other year switch-off that they started last year. Teresa came the weekend before to have the experience of cooking a turkey, which she likes to do and has been helping with since she was about eleven or twelve. We began the weekend with a girls’ night out, four daughters and their mom at a brewery on Paradise. We went there because Krista’s work folks were having a Happy Hour there, and it seemed as good a place as any. Also, this way Krista could invite Luke to come and meet not only all the Kulesza women in one full swoop but her professional colleagues as well. From what I saw, Luke handled all of these new folks with great finesse. He seemed very personable and at ease with whomever he was talking to…could be he’s a keeper…not everyone fairs so well with five of us all at once. We have traditionally been the kind of family, you need to ease your way in to…too much pressure to meet us all at once.

When I got up Saturday morning, I swear I actually thought to myself that I felt like I did when I was a seven-year-old kid up before everyone else on Christmas morning, waiting for someone to get up so the magic could start. I finally couldn’t take waiting any more, and I woke Teresa up. Basically, I watched her make stuffing and get the turkey ready for the oven. For the rest of the weekend, we mostly just hung out with family. We went to J.J.’s soccer game, saw “Michael Clayton,” (George Clooney lookin’ good but a slow, slow plot), met John at the Ranch following the movie, went to Sue’s on Sunday and had lunch and then went to Jay’s to see the little kids…after that took Teresa to the airport.

So, where did the “I liked You Better When You Were Sick” comment come in? Sometime during the weekend. Why? My answer would be because I’m a snot or even more so I can be quite a bitch given the right conditions. What exactly did that comment mean? I’ll leave it to the reader to interpret…Here are some suggestions…it could have meant:

I liked you better when you were too tired to be a bitch, in a chemo haze, falling asleep again throughout the day shortly after waking up, prowling around at night because of sleeping all day, too tired to talk, answer the phone, take a shower, do laundry, get anything to eat, answer the phone…well, just plain too tired.

Or

I liked you better when you were too busy and too scared to be a bitch because you had a lump in your breast, a biopsy, an angiogram, a lumpectomy, a mastectomy, drains hanging from where there used to be a breast, visiting nurses coming to the home to help you, a port placed inside your arm, and you were looking at starting chemo treatments…

Or

I liked you better when you were too humble and too scared to be a bitch because you were going through chemo and being knocked down every three weeks, losing your hair and buzzing off what was left, losing your eyebrows and your eyelashes, being fitted for a prosthetic, sleeping on a soft little pink cancer pillow if you wanted to turn on your left side because it was still uncomfortable from the surgery, lymph node removal, etc., yet not so great on the right side either because of the port in your arm…

Well, regardless, which of the three above is correct, or if there’s another meaning entirely, does it really matter? Doesn’t it really put into perspective the human condition, though? Doesn’t it truly demonstrate how much one person can try to hurt another? Doesn’t it show how someone can be cut to the core by mere words? AND, really, do those words matter anyway? I remember when I wrote that email to the Goolsby staff, what seems like so long ago now, one of the responses from a teacher who had breast cancer at a young age responded that she’d been through the wringer and would tell me anything I wanted to know. Well, now I know. I’ve been through the wringer and I’ve been through Hell, and maybe there’s more Hell with radiation or Herceptin or whatever else is in store for me. But, “I liked you better when you were sick”…THAT just makes me an ever nastier snot and stronger bitch than I’ve already shown I can be…AND, Oh, just one more little humorous, ironic twist…in a week, he won’t remember that he ever said it, if he hasn’t forgotten it already, but me…I get to hold it deep in my heart until I don’t know when…and now you get to remember it, too…