All’s Well that Ends Well…

 It must be difficult to be the significant other of a cancer patient. The person with cancer must be consumed with herself: the discovery, the tests, the diagnosis, the surgeries, the treatments, the side effects. She probably puts on a great act around others in the workplace, in the family, wherever. Does she drop all of that as she inserts the key into the lock of her front door? Are all bets off? Does the person inside bear the brunt of the experience she’s going through? I don’t know; I don’t think so. I read all the chapters in all the cancer books that pertained to me…what expectations I should have following each of the experiences I endured, what side effects might be next, reactions and long-term effects of the drugs I’ve taken and those I continue to take. I didn’t read about how to be a significant other of a cancer patient. There were probably chapters on it; but that wasn’t my role, so I didn’t read them. Did the significant other read them? No. Did he try his best? Maybe. Was it enough? No. Is the past year of cancer treatment and survival the reason he’s gone? No. It’s so much more than that, but it’s not for recording here. You know that saying about “water under the bridge”? Well, it’s supposed to refer to something that’s done, over with, not worth mentioning or worrying about any longer. Once in my life I made a road trip to Denver. A fifth grade teacher, who had done that many times, commented that I’d be crossing the Continental Divide. Not wishing to expose my ignorance, I agreed and then researched what that was. It turns out that on this trip, the Continental Divide would be where the Colorado River changes the direction of its flow. On the west side of the Divide, the river flows toward the Pacific Ocean, while on the east side, it flows toward the Atlantic Ocean. What’s the connection here? The water under my bridge doesn’t have a straight outlet to either one of those; it just keeps circulating around and coming back to me. The water under the bridge, that fluid thing that needs to be put in the past, trivialized, and forgotten, just keeps on comin’ back. Well, I said that story wasn’t for here; and it’s not. If you are the cancer patient, you are consumed with yourself. You’d better be. You’re experiencing new horrors and scares at every turn. Your mortality is staring you in the face. You weren’t prepared for this, you don’t want it, and you pray it’s not a death sentence. You care about its impact on others, but there isn’t much you can do to change that. It’s your challenge. You get through the best you can; you just want your real life back, not the life you’re living with cancer. If you’re the significant other, just being there isn’t enough. Do your research. What’s your role? Can you know what the cancer patient’s going through? No. You can see it, you can hear it, you can even feel bad about it; but you don’t know. I’m not going to go through a litany of missed opportunities from my experience; I don’t want to conger them up or dwell on them, much less tell about them. I know this, and I can tell significant others this. Don’t minimize the procedures, the treatments, or the side effects. Do minimize the breast loss, the hair loss, and the fatigue. You need to say out loud the word love, even if that’s a word you’ve used sparingly in your life. Say it. Shout it. Whisper it. Mean it. You need to say: I love you. You need to say it loud, and say it clear. You need your acts to reflect it loudly and clearly. Say: I need you to get better. Say: There’s more to come for us. Say: There’s more for us to do. Say: It doesn’t matter that you’re missing a breast. Say: It doesn’t matter that you’re bald. Say: It doesn’t matter if you sleep day and night for two or three days after a treatment. Research your role. Read about what you can do. Join a support group or a counseling group. Get help. Is cancer the reason he’s gone? No. Was it the patient’s inability to deal with the significant other? No. Was it the significant other’s inability to deal with the cancer patient? No. It’s the water under the bridge.

Letters, Lies, and Liberation…

Don’t you just love alliteration? I do. Letters…I’ve written my second Dear Staff letter about cancer…Last April when I wrote to the Goolsby staff, it was gut-wrenching. I was in the early stages of knowing I had cancer and knowing I was facing a lengthy ordeal. I remember how difficult it was to write that letter, tears streaming as I admitted it to myself, preparing to say publicly that I had cancer. Almost a year has gone by, and now I’ve written to the Harmon staff. I know some Harmon staff members knew about me. Some I told, and others heard. I started thinking about writing a letter to invite anyone on staff who might be interested to join Team Kulesza for the Race for the Cure walk on May 3^rd. I asked Laura if people knew about me, and she responded in no uncertain terms, “They know.” I composed the letter and then went looking for appropriate paper on which to print it. I found the perfect paper. It had adults and children holding hands in a line, all facing out, looking as though they could be walking together. There was a line of the people across the top of the page and a line across the bottom. On Monday morning I put the letters in all of the mailboxes. Here’s the letter without the walking borders:

Dear Harmon Staff,

My family has formed a team, appropriately named, Team Kulesza to participate in the Susan G. Komen Race for the Cure on May 3^rd. If you’ve ever given any thought to helping a worthwhile cause, this is your chance. As so many of you already know, there’s hardly a family left untouched by cancer anymore. If you haven’t been exercising lately, you can sign up for just a 1K walk (that’s my speed, but I’m aspiring to the 5K). We want this to be a family day with all the kids, spouses, and others. We hope to all meet before the event and start the walk together on Fremont Street. If you’re interested and would like to join Team Kulesza, you can do so at: http://www.komensouthernnevada.org/. While you’re there, check out the cool team logo designed by Team Captain, Krista Kulesza, and her colleagues at MGMMirage Corporate Communications as well as my personal page, which is still under construction. Honestly, this is a first for me, so if you’ve never done this before either, we can figure it out together.

Although I’m hesitant to divulge my private thoughts to all of you, my personal history and continuing saga with cancer can be found on my blog (online journal) at: www.drdottie.com. At this point, I’ve had over 12,000 hits on my blog, with a message from as far away as New Zealand. It’s not really what I would call an easy read; it has over 75 entries and goes back to April, 2007. If reading it, however, convinces you to walk with us and help find a cure for cancer, all the better.

Thank you,

Dottie

Lies…In a way, I was living a lie at Harmon. I wasn’t really pretending that I was someone else, except for the part about being someone else with hair. It began to dawn on me toward the end of January that I’d been trying to prove something ever since I’d been at Harmon. I think I was trying to prove that I could get knocked down every three weeks from a chemo treatment, finish those and move on to 25 daily radiation treatments before going to school, do my demanding job as assistant principal, keep teaching my classes at UNLV, and barely miss any days of school. I suppose if that’s what I was doing, I was successful. Once I made it through all of that, I cut myself a break in February and took a couple of Fridays off just to have them off. It was somewhat like living a lie. I think it’s called equivocation. It’s not an outright lie; it’s just not telling the whole truth. I certainly have not been telling the whole truth since I went to Harmon. Liberation…I feel completely liberated now! Along with putting the letters in all the mailboxes on Monday, I put my wig on a shelf at home and started wearing hats to school. I’ve gotten many compliments, but even if I hadn’t, I feel so much better. Of course, I do have some hair now (ridiculously white); but at least there’s some hair to stick out from underneath the hats. I really couldn’t have gone wigless a few months ago when I was truly bald. I hope some Harmon staff members will join us for the walk, but it’s okay if they don’t. The acts of sending the truth-divulging letter and giving up the wig have set me free…to be me.

My Two New Favorite Words: Fabuloso Survivor…

On Monday I had a mammogram right down the street from Goolsby. Since I took half a day off for my appointment, I thought I’d go visit my old friends. The folks there blow me away. Every time I go there, it’s like Old Home Week, whatever that is, but it’s really good! I saw so many staff members while I was there, and it was great to see their faces and how good they all look. I went to Beth’s kindergarten classroom. She was just preparing for a read-aloud. She introduced me to all the children with a glowing description of how she learned all about teaching reading from me, etc. Of course, her students don’t know me because they weren’t there last year when I was. I told them the J.J. story about not looking at pictures when he reads. To answer Beth’s question about what that is called, they responded in unison, “Picture clues!” Later that day, I received an email from Beth with an attachment of one of her student’s journal writing for that day. He wrote, “Today M.S. Jacobsen’s frend kame here. She was fabuloso.” Beth explained that their fancy word for that week was fabuloso. That’s one of my new favorite words. I think I’ll request that people refer to me as Dr. Dottie Fabuloso! On Friday, I had an appointment with Dr. Manno, my oncologist. I have not seen him since November before my last chemo treatment. It’s not that I didn’t want to see him. He said I should see him before I started the Herceptin treatments, but his nurse said that wasn’t necessary; and you can’t get past the nurse. I had called after I finished radiation and asked if I might see the doctor again, and this time she agreed and set an appointment for me. Krista planned to go with me. I had a rough week. I had touches of the flu, and I begin to build up anxiety about the appointment with Dr. Manno. A couple of days before, the big Las Vegas story about misuses of equipment at the Endoscopy Center broke. On Thursday night when I got home, I saw on my caller I.D. that I had a call from a doctor who is a gastroenterologist. Although, I had not received any services from that genre of doctor, and the only medical test I’d had was a mammogram, I started to worry. I know that sounds completely crazy because there wasn’t even a message from the caller, but I got all worked up anyway. Krista assured me that the doctor was going to tell me that I was fine and to come back in six months. So, Friday we went to the doctor. As usual, he was all about business. He examined me and then turned his attention to my record on the computer. He asked if I’d started taking the next medication, and I replied that I thought I was to start that after the Herceptin. He said that I could start it now. It is called Arimosin, and the reason for my taking it is because I tested positive for hormone receptors. I believe the purpose is to keep estrogen levels down to inhibit any cancer cells that respond to that hormone. He said he’s heard of almost no side effects and that I shouldn’t worry about any. I will take it daily in pill form for five years. He was quite busy with the computer, but I finally said, “So, where do I stand with cancer now?” He responded with my second new favorite word of the week; he said, “You’re a survivor.” There’s the story of my two new favorite words, one from the pencil of a kindergartner, the other from the mouth of my oncologist. They have a nice ring, don’t you think? Fabuloso Survivor! Now, Ann and Kim, I know you probably want to start lining up the shots, but I have to tell you that although I feel ready, I can’t do it without Bobbie. Let’s wait a little and see if she can celebrate with us.