Good News…

Yesterday was a good news day. I’m still not really comfortable talking about it. It’s not that I believe in hexes or anything like that (although at least one of my children does, but I won’t tell you his name). It’s just that maybe I believe in bad luck…like…if you hear really good news and you get too excited about it or talk too much about it or actually start to believe it, somehow or other it will get ripped away from you. I have a recent story to vouch for that belief. Mary told me about her sister, who just underwent cancer surgery. Although her sister was experiencing some post-surgery pain, they were all celebrating that she made it through, etc. The next day, her sister got a call that they did not get it all; and she has to have another surgery in July. So, being superstitious, or whatever you want to call it, I started thinking today…What if I have a message at home that this good news was all or mostly a mistake? He didn’t mention blood test results, what if I have Leukemia, and he overlooked it? What if? What if? So far today, no calls or messages to pull the rug out from under me, so I guess I’ll share……As you might have guessed, Susan and Krista both went to the oncologist appointment with me. Susan actually met me there earlier, since I had an appointment to see about a wig. Being the day after a long weekend, things were mixed up and hectic at the Cancer Institute. The wig lady was running late, and so was the doctor. Susan and I went and sat in the café and waited. As she told the boutique lady, we just want to talk anyway. The doctor’s appointment magically got moved up a little earlier. We called Krista and told her she should leave work because we were going up…The assistant said if Krista didn’t get there in time, she would just have the doctor see another patient ahead of us. Krista did get there in time, and there we were with the oncologist waiting to hear results of the PET/CT scan that searched for cancer cells throughout my body. What is it about doctors? They never jump right in to what you want to know. Remember the surgeon…he truly never said the word cancer until I asked him a direct question. Here we go again…the doctor read the report of the scans as we sat there. He didn’t say anything about what was in it. He just started talking about chemo, asked to see my surgery site, etc. Finally, I had to come right out and ask, “Was there cancer anywhere else?” “Oh, no,” was his reply. And here are the best words I’ve heard from a doctor yet, “You do not have an incurable disease. You have a curable disease.” Halleluiah! Why couldn’t he have said that right up front? I kept giving sideways glances to both of my daughters, which meant, “Why isn’t he saying anything about the results?” In hindsight, his news was worth waiting for; but don’t they get why you’re there and what your worst fears are? Next, he explained all about chemo…the drugs, the regimen, other tests I need first, etc. Susan took notes on everything so we can review it again. He even told us a good website to visit to read more about chemo. During the course of the visit, we discovered that my surgery site was most likely housing an infection. I have no idea why this would happen after three weeks, but it did. Susan immediately wanted the number of the surgeon’s office to call and tell them this latest update and get help. The oncologist had a bit of a sense of humor, as he advised Susan of the two buzz words she needed to use… red and  painful. He also said not to let them put her through to the nurse or assistant. He doesn’t know Susan very well yet. There was no doubt in my mind that she would get this taken care of…red and painful. They said they would be calling in a prescription for an antibiotic right away. O.K., so chemo has to wait a little bit while I get rid of the infection at the surgical site. Also, I have to have a MUGA Scan. Boy, what else? The MUGA (Multi Gated Acquistion) scan looks at your heart. I think, without looking at Susan’s notes, that this is for baseline data to be able to keep track of any heart damage the chemo drugs may cause. I told him I already had an angiogram, but he said that wouldn’t work for him. Online reports show that this is another two hour test. I hope I won’t be lying prone with both arms above my head like the PET/CT scan, but I’d be willing to bet that it will be close. Also, another out-patient procedure to go through is to have an intravenous port implanted (I hope this is in the arm, but I’m not sure and don’t want to think about that right now.) So, another visit to my surgeon to check the status of the infection, another scan, and another out-patient procedure…and I’ll be good to go for chemo…Oh, about the wig. The day I went for the PET/CT scan, I also met with the boutique lady about a wig. She matched the colors in my hair, not easy since only my hairdresser knows the real formula. But Louise did a great job. After the doctor’s appointment, Susan and I met with the wig hairdresser. All I can say is, “First time’s a charm.” The first wig I tried on was perfect, and although it’s hard to imagine… I think even cuter than my own hairstyle.:) As Louise pointed out, sometimes as we get older our hair thins out, and the wig will seem quite thick. Oh, yes, that was a perk…nice thick hair, closely matched to my color, red highlights, and I can spike it out and it looks great. Susan suggested just getting my hair cut off and wearing the wig….not to mention, it makes me look younger….who would have guessed that we could find positive things in all of this? As soon as Krista left to go back to work (She didn’t stay for the wig party), I’m sure she was on her phone calling other members of the family with the good news. Jay and John both called me within an hour or two. I always tell them to check with the Communications Specialist (that’s Krista), but last time she reminded me that title is no longer correct…she’s now Communications Manager. By the way, I posted that announcement of her promotion to a piece of black construction paper, laminated it, and hung it up in my office today. It’s on a bulletin board that houses a picture of Jay, John, and J.J. that was published in a San Diego newspaper as they attended a Chargers/Raiders football game; an article and picture of Jason for winning the Geography Bee at his school two years in a row; and Teresa’s and Elliott’s engagement announcement and picture from the R.J. I called Teresa my self and told her the good news. She and Elliott made it safely to their new home in the Bay area and are settling in to their very small one bedroom apartment and new engineering office. Things are moving right along…that’s life.

Another Milestone…

Yesterday was another milestone in my life…a return to work (school) two weeks and one day after M&M&M Day. My colleagues and friends were so generous with their support and compliments. Some were surprised I was back; others commented how “good” I looked; others were surprised that I made it through the whole day. My continuing complaint (a small one, all things considered) is the damn camisole. I don’t like it. It doesn’t feel right. I hope I can get back to a bra pretty soon. It makes me think of those poor women in the 1800s or whenever it was that they wore those laced up corsets. I’m sure the camisole is not that uncomfortable, but it’s also not that natural to me. Today was my second day back and even better than the first. There was a double baby-shower after school today. We have a population explosion of babies at our school this year. Today’s shower took me back to a day in March when we also had a double baby shower after school. On that day I got a call from a friend who is a doctor who managed to get a copy of the results of my biopsy. At around 3:00, she calmly said, “I’m sorry. It’s cancer.” Until that moment in time, I still had hope that I would escape membership in the Cancer Club. After all, the biopsy could have come out differently. The lump/mass could have been a mistake as I thought it was the first day I discovered it. Couldn’t it have been something that I could take a pill for to dissolve it and have it disappear? Couldn’t it have been some latent infection from nursing babies? All moot/rhetorical questions…we all know it wasn’t anything simple…it was (calmly) cancer. Following that phone call, I went to the teachers’ lounge and joined in the double shower festivities. No one could have known the news I had just received or possibly have guessed such a thing from my countenance. Inside, I was wondering what on earth I was doing sitting there celebrating the pregnancies and future family members, when life for me could be slipping away. Of course, since then, I’ve come to realize that, for the most part, cancer is not a death sentence any more (probably depending on where it is in one’s body). But today did take me back to that day. That was the first actual acknowledgement that I had cancer, and the circumstances will probably remain a memory for some time. Like, for you older folks, what were you doing when you heard that JKF had been shot, and for many more, what were you doing when you heard about the World Trade Center? Those become moments frozen in time. I don’t want anymore of those in my life. Next week I will meet with the oncologist (really never wanted to have one of those) and hear the results of the PET/CT scan. I have an on-going argument with Susan and Krista that I want to go alone. For every other doctor’s visit, someone has gone with me, especially if bad news could come out. I know that’s the smart thing to do; that’s why I did it before. At some point when a doctor is talking to you, you lose focus on the details of what he said, and you can’t think of all the right (or wrong) questions to ask. Krista said, “We’ll talk about it later.” Susan will not take, “No” for an answer. Let’s see…when I went back to the cardiologist months ago to hear the results of my stress test, Krista and John went with me. Dr. B. said that I didn’t pass the test, that I had a 20% chance of having a heart event (interpreted by me to mean attack or stroke) within the next six months, and that I needed an angiogram. It was hard to look at Krista’s and John’s faces as they received the news at the same time I did. I didn’t have a heart event in the next six months, but Dr. B. did control my life for quite some time. I paid out-of-pocket to have a coronary CT scan to prove to him that I didn’t need an angiogram, but he said I still needed it. While I was retracing my medical steps and going back through my Primary Care Physician for a referral to Dr. B. and also stalling on the angiogram (which scared me out of  my wits), I one-upped Dr. B and got cancer instead. He would not approve my going off aspirin for the biopsy, but they did it anyway. Then, no doctor would perform any surgery on me until I had the angiogram. So, Dr. B. got his way. I had the angiogram, but he was on vacation so one of his colleagues performed it. I was cleared for surgery. Back to the children and their responses to my medical updates. Although we already knew that I had cancer when I went to get the official news from the surgeon (soap opera doctor) because my friend had already checked it out, the news seemed to be traumatic for Susan. She and Krista and Joe went with me. The soap opera doctor never said the word cancer. He said lump, surgery, lumpectomy, mastectomy, lymph nodes, margin of tissue, etc. Finally, I said, “Are there cancer cells in there?” He said, very much like the other doctor who told me first, “Oh, yes, it’s cancer.” When I told him about the angiogram thing, he said they would call Dr. B.’s office and try to get them to speed up a date for it so I could hopefully get clearance and move on to breast surgery. Susan would not let us leave the office until we found out if they were calling and what they would find out from the cardiologist’s office. If you knew Susan, you would know that she has had her own medical issues; and you would not expect a lot of sympathy or empathy from her. She would be someone I would not expect to become emotional over the cancer diagnosis, which we already knew about before he said it. Also, to interject another short story about my family dynamics…when I discovered the lump in my breast, I did not rush to tell anyone about. I really didn’t think I could say the words. For the previous four months, Susan had constantly badgered me about getting the angiogram. What was I doing about it? Who was I calling? When was I going to have it done? Well, one day, Susan, Kathi, Krista and I went for coffee. Susan started again, “Have you called the doctor to schedule the angiogram?” Being slightly irritated, I responded (not very nicely and I’m not proud of it). “Actually, I found a huge lump in my breast, and I think I’m going to have to take care of that first.” In education we talk about the multi-dimensionality of the classroom, the simultaneity…the teacher might say something to a child on one side of the room that overheard by a child on the other side of the room will bring tears to his eyes. This scenario was much like that. When I addressed my answer to Susan, quiet tears rolled down Krista’s cheeks. Susan basically told her to stop crying right now and then demanded more answers about what I was doing about this latest development. After coffee, as we all walked out to our cars, Krista and I ended up in proximity to each other; we both started to cry. Susan came over and once again told us to stop crying. So…what a surprise while waiting in the surgeon’s office for them to call the cardiologist, who tears up? Susan. Go figure. I looked at Krista, pointed to Susan, and said, “What’s this?” There was more bad news from the soap opera doctor following the lumpectomy in the hospital. He told me (while I was in an anesthesia hang-over) along with some configuration of my family that I would guess to be Joe, John, and Krista who were at the hospital all day and Susan, who came from work, that I had much lymph node involvement and that he had removed many of them and that I would next need a mastectomy. For a few moments I knew what he had said and understood it. As Susan, alone, approached my bed/cot/guerney/stretcher in the recovery area, we both cried. Krista reported this to Joe and John and said Susan was going to be out of the loop if she didn’t stop crying in front of mom. Interestingly enough, I forgot this information when I went home on that Thursda
y. I felt that people were talking like I wasn’t done and things hadn’t gone that well and there was more to come, but I did not consciously remember that information. That is, until Sunday afternoon when Susan mentioned that I was going to have a mastectomy. I don’t think I showed any surprise when she said it, but when she left, I questioned Teresa about it. So, my family, from Thursday to Sunday knew that I needed a mastectomy, pretty much suspected that I didn’t remember or know that, but no one old me. The reason behind all of these stories is to support my stance that I don’t want anyone to go with me to the oncologist next week. I know my feelings are not going to be honored or accepted by some of my children. Here’s the part that’s hard to explain.
Above and beyond anything else in this world, I am a mother. I’ve invested a lifetime in that position and role in life. It defines me and makes me what and who I am. I can take any more bad news about me. I can hear it, try to absorb it, and try to bear it. What I can’t take or bear is having to sit through another encounter with another doctor and try to ignore the looks on my children’s faces, masking their true emotions, as they hear more bad news about their mother. Do I expect bad news from the oncologist? Do you think I’m being pessimistic here? Jay would probably say so. Joe would say so. I disagree; I’m being realistic. Chances are there may be more bad news. Would you want your child to hear it with you? Wouldn’t you rather digest it first, get used to it, and explain it in your own maternal fashion? If it’s good news, Joe and I have been saving a bottle of champagne to open the first time we get good health news (the champagne’s getting old). We can pick up another bottle on the way home from the Cancer Institute, and everyone can come and celebrate together!

PET Scan/CT Scan

I made it through the PET Scan/CT Scan. If you have a claustrophobic bone in your body or if you have the slightest hyperactive tendency, I don’t recommend these tests. I called and spoke to the technicians long before I scheduled the test, and I took notes on what they said. I had a copy of the directions and what to expect when I arrived. First, you have to get there an hour before the scheduled time and have blood drawn. Actually, that’s not first. You really start the evening before, eating nothing-after-dinner and drinking only two glasses of water the morning of the test. I got around the nothing-after-dinner by going out for a great dinner that lasted through several courses, so I didn’t need  anything else to eat last night. I was a little late arriving (very unlike me, but for many of the places I’ve had to go lately, I tend to drag my feet getting ready). Joe wanted to go get coffee for himself, which at first I said, “No” to, but what’s the difference? If it were he getting the test, I guess I would still want my morning coffee. After the blood test, you go to the Lower Level (I think they should call it something else because right there it sounds ominous like inner sanctum or down in the dungeon.) After sitting there for awhile, they called me up to the desk. The girl asked me what flavored Barium drink I wanted: apple, berry, banana, or vanilla. I looked at her like there must be some mistake. I can tell you right now there was nothing in any of my notes or directions about drinking anything with the word Barium in it. I told her that I was having a PET scan, thinking surely they had made a mistake. She said that it wasn’t a mistake, and I asked her to repeat the flavor choices. I took vanilla, and I know the Vanilla Bean Frappuccino at Starbucks is never going to be the same again. Of course, she replied in the affirmative when I asked if I had to drink it all. I took my vanilla Barium (Doesn’t just that word Barium alone bring up bad connotations of intestines and bowels, etc.?) and sat back down next to Joe and pouted. I pulled my directions for the test out of my purse and asked him to go ask the girl about the Barium drink that was not listed in the directions. Joe loves to ask questions, so he did. There was no other answer. I had to drink it all. Pretty soon they called me back. I brought the Ipod, not set on the sad section of Jay’s All Time Favorites, and I was ready to sit quietly in the recliner after they put in an IV and some shot of something (harmless). By the way, I had already signed the waiver stating that minor allergic reactions occur in 1 to 30 patients; severe allergic reactions occur 1 of 2,000 patients; and, as Joe reminded me earlier, the actual risk of death is less than 1 in 150,000. I was supposed to be seated for approximately 45 minutes to one hour listening to the Ipod and waiting for the injection to circulate through the tissues of my body. Sooner than that, one of the technicians appeared with a glass of water, of which I needed to drink the whole thing. Following a trip to the restroom, I was ushered into the inner sanctum in the Lower Level for the test. I was told that I could listen to the Ipod for part of the test; and if I wanted to, I needed to turn it on then and leave it playing and ready to go when we got to that part. About the technicians…really everywhere I’ve gone for tests, labs, surgeries, etc., I have found the technicians and nurses so very nice and compassionate (There was one exception in the lab before the lumpectomy, but that’s a story for another time.) The ladies explained the procedure, got me settled on the 12” wide cot/bed/whatever and had me place both arms above my head. They started the first part for which I could not use the Ipod. When that was finished one came and told me I could use one hand to insert the ear pieces for the Ipod, Then I had to put that hand back above my head joining the other hand where she placed the Ipod, which could not be manipulated. Honestly, it took everything I had to make it through the rest. They said there would be a total of around 20 minutes. They lied. I think it was double that. I kept my eyes closed almost the entire time so I could pretend I was not in the tunnel part of the machine. I heard American Pie and several other songs. When we got to the The Road-Out by Jackson Browne, I just knew if I could make it through that roughly six minute song, I had to be done. No, not yet. It had to be way past 20 minutes. They lied. I said pretty much the entire Rosary, and I knew when I finished that and The Road-Out, I would be rescued. I didn’t think I could take another minute. I wanted to ask how much longer, but I was afraid. If they said more than two minutes, I couldn’t make it. I’m so grateful to Donna M. who told me to get over the machinery and just think of it as my friend, to know that it’s tracking down any cancer cells I have in my body. Thanks, Donna, I kept that in my thoughts as much as possible and used it to chase away the anxiety. Mercifully, one of the tech ladies came in. She said they had to make sure the pictures took. I asked her if she could help me sit up in the meantime. I could not possibly have gotten up by myself. She helped me, said the pictures were good, and that I could go. God Bless. When I ran for my life from the Lower Level, I went to meet with the lady who runs the boutique at the Cancer Institute. She was very helpful, very honest about side effects of chemo, which will be my next challenge. You know, I thought I was going to save money on hair products and stuff (since I’m not going to have any hair), but I can see that I’m going to need many other products for scalp, skin, make-up, special deodorant, toothpaste, etc. It’s going to be a whole new world!

I can’t believe you want to board the Anxiety Train. Others in the family already have the first class seats on that vehicle. Let’s think about what happened to you. Could it be stress? Hmmm, you’re moving next weekend away from your first house, first out-of-college job, and Elliott’s family; you’re taking on responsibility of Team Leader and opening the new office of your engineering company, studying for the Green thing, and your mother’s been diagnosed with cancer. Just think about what a nice day you were having when this strange illness came upon you. You played with Conner (don’t know how often you’ll get to see him anymore), and you had your favorite refreshments at Walden’s (Wonder if there’ll be anything like that nearby your new home in California). Not to mention, Elliott passed the test on the first trial, and you didn’t. I’m thinking stress…or possibly, even better, a 24 hour instant flu. By the way, didn’t you already give up coffee (more than once)? Margaritas, how could they hurt? Soy…the jury’s still out on that one. I think writing about your experience was a good thing to do. Heaven knows, getting my thoughts out of my head and onto my blog is helping me cope. I’m not sure that people’s actions are a lack of sympathy, as much as a lack of knowing what to do. Awhile ago, I was sitting at the computer, first working, then playing Hearts, Free Cell, and Solitaire. I have my Ipod set up there, and it was running through the sad part of Jay’s All Time Favorite Playlist. I’d already heard The Rose, Mariah Carey’s Hero (That Krista said she would want played at her funeral), and on came The Dance. I was already feeling sorry for myself because I was thinking about taking a shower, and I knew the water running on my chest was going to hurt. I was thinking about then getting dressed, and that was even worse. I’d have to put on that damn camisole thing I got at the Post-Mastectomy Boutique. Oh yeah, I got one, actually two, the other day. They’re ridiculous. You know how hot I am all the time? Well, these things are made of clingy Lycra or something like that, and they reach down below your waist. (It’s a hundred degrees outside, already.) Susan helped me fix it so I wouldn’t look lopsided. The problem is…I’m not young and perky, and gravity has taken its toll on certain parts of my body. The camisole is made so the inserts give you boobs almost up to your neck; believe me, that is not fitting for a woman my age. Anyway, Susan messed with them until they were sort of even, and I thought maybe it would be bearable to wear the thing. (But, not today) O.K., back to sympathy…having those negative thoughts and generally just feeling sorry for myself that something so natural (a shower and getting dressed) was making me depressed, The Dance put me over. Enter your father…me sobbing in front of the computer with head in hands, “What are you doing, passing out there?” Since he asked, I’ll just turn my tear-streaked face up to him and see if it looks like I’m passing out or perhaps crying. I know he’s sympathetic toward me; I know, as much as possible, he’s going through this with me, but does he know what to do to show sympathy? Not a chance! “Are you all right?” “No.” “Do you want me to stay or go to the store like I planned?” “Just go.” I solved my own problems. I didn’t take the shower. I got out an old, really stretched out bra and thought if I can get this on without hurting anything, I can stuff one side and feel more normal than I would in the camisole. It worked. I’m still kind of lopsided, but I feel a lot better. I promise once you make it through this week, things will be better. When you get your clothes hung up in your new closet and your dishes stacked away in the kitchen cupboards, things will be better. Then check the neighborhood for a place like Walden’s. You know, you always amazed me on my visits to Reno by taking me to the most wonderful little spots you’d found. I liked that coffee spot right down by the river, and Walden’s, and some other bakery place we went to, and the bread store, and the breakfast pancake place downtown, and then that sort-of throw back to the 50’s place that Elliott found for us all to go to breakfast. I can’t wait to come to visit you in your new home where you will have all those great little places scoped out. So, sympathy isn’t all it’s cracked up to be; it’s coming up with the right reaction to someone else’s plight…like the cool cloth. Do you think your dad will come home with a cool cloth, a flower, anything? No, me neither. But, he did call and say he’s getting his shock absorbers fixed in his car so he can drive me around (without me complaining about the pain when we go over speed bumps). Don’t get aboard that Anxiety Train; it will take you to places you don’t want to visit. You’ll be frightened, worried, sick, and eventually on medication. In the end, it’s really just mind over matter. Here is my advice. Make lists (you probably do, anyway), and cross things off as you get them done…fewer things on the list equals lowered anxiety. Always talk to Elliott and try hard to make him hear, even if he doesn’t understand. Continue to think of yourself as the strong person you’ve always been. Mostly, know that your move is a new and wonderful and bright beginning to all things good. If none of this works, call me.

Love,

Mom

O.K., Sylvia Brown(e) was a bust. In case anyone ever thinks of attending a similar performance, I couldn’t recommend it. It was in a ballroom the size of several football fields, so it was good to be up close enough to see the big screens (Our tickets were more costly so that we could have preferred seating). Paying more for your ticket so you can be closer to the front to maybe get to ask her a personal question doesn’t actually work. When you go in, you get a paper bracelet; each bracelet has a number. When she’s ready to answer personal questions, she randomly calls ticket numbers; and those are the people who get to go up front. We left for that part, which was no different than what she does on Montel; and we beat the crowd to the valet parking. For about an hour, she just talks about random subjects. She started off with relationships. I did not agree with her comments about children and families. As you’ve read my postings, you can see that family is just about everything to me, and with what I’m experiencing now, I’m reaping the benefits of all that maternal love and understanding I bestowed over the years. Sylvia talked about ridding oneself of loser children whom parents have helped and helped and helped and still can’t get it together. She completely bad-mouthed grandchildren. Surely, she doesn’t have a J.J. in her life, that marvelous five-year-old grandson of mine. I hear from other people in the family that whenever he says something to someone, he always follows with the disclaimer, “Except for Grandma.” For example, if he tells someone he loves them than more than anybody, he follows with…except for Grandma. If he tells someone that they’re the best whatever, he follows with…except for Grandma. I know Sylvia doesn’t have a J.J. in her life. Sylvia said she would not do over what she’d done in her life…which clearly meant she wouldn’t have her children again. I didn’t get it. Maybe I should have listened more closely to her on Montel or read some of her books. I always thought it was funny that she’d talk about her marriages not working out because if she was psychic, wouldn’t she know? She conducted a way-too-long meditation. I kept waiting for her to get to the part where the white light, surrounded by the gold light, surrounded by the purple light, surrounded by the emerald green light, would finish coursing through my body (She started with the feet and went through every internal organ on the way to the brain) and leave with the cancer. I don’t think it worked for me because I couldn’t keep my feet flat on the floor any longer or my palms upright on my lap any longer. I don’t think I’ll be signing on for one of her cruises, although maybe Joe would like to go…He didn’t get to ask his question, so whether or not he’ll be alive (and living somewhere on the planet) next year still remains unanswered. That seems only fair, since that question is unanswered for all of us. Today I’m going to go to a boutique (never been to one before) that specializes in post-mastectomy whatevers (really never been to one of those before). What new experiences I’m having and great that I’m sharing them with you all…The next time anyone sees me, they won’t be able to tell, except for the pin I’m going to buy that says, “It’s this one!

A note to those of you who sign in my guestbook or add a comment after a post, you make my day! Thank you so much…

Aftermath 5/17/07

Mindy says I don’t post often enough on my blog. I say she doesn’t check it often enough. As usual, the truth is probably somewhere in between. Writing for the blog is gut-wrenching. Little Ole Me says my writing comes through and touches the reader, and she understands how difficult it must be to put myself out there. Yeah, baby, that’s the truth. Catharsis…is that what this writing provides for me?

Online dictionary defines catharsis as:

 ·  A purifying or figurative cleansing of the emotions, especially pity and fear, described by Aristotle as an effect of tragic drama on its audience.

·  A release of emotional tension, as after an overwhelming experience, that restores or refreshes the spirit.

That appears to be part of what I’m doing here. It’s a cleansing of emotions…It’s drama, all right…There’s been more than one overwhelming experience…Is my spirit restored or refreshed yet? I don’t think so. Tuesday I visited my surgeon. I told Joe on the way there that if he doesn’t take the drains out, I’m going to cry on the way home. I doubt I would have waited until I got in the car to start crying. The assistant did not provide hope that he would take the drains out. We were both worried waiting for the doctor to come in, fearing the worst…that I would leave with the drains intact and that I would be a basket case of depression on the way home. I love my surgeon. He took the drains off. I referred to him earlier as the soap opera doctor. He looks exactly the way one expects a doctor to look on Days of Our Lives or Young and the Restless, but he always listens; and he always answers all of my questions, no matter how long the list. He said that everything looks good. I wouldn’t say so, but if he’s happy with his handiwork and says I’m progressing, that’s good enough for me. I have a new section in my home library…it’s the Cancer Section. Most of the books are in a basket in the living room for easy access. I can quickly look up in several books, at my fingertips, the latest whatever it is that’s concerning me. I asked the doctor about the pain. He pretty much said that wherever it hurts is where it’s going to hurt. I asked him about arm exercises. He said, “Just use your arm.” See why I like him? No nonsense. He’s almost through with me. I have one more appointment, probably a quick check. He’s released me for all of the next things coming up…PET scan to see where else the cancer could be and then chemo. Hmmm, Joyous! Tonight Joe and I are going to see Sylvia Brown…if you haven’t heard of her, she’s a renowned psychic. She appears each Wednesday on the Montel Williams Show, and she’s written a ton of books. We ordered the tickets months ago, B.C. (Before Cancer). Joe wants to sit close enough to ask her one question…Where does she see him living next year? If he gets an answer of a place somewhere on this planet, he will ass-ume that he will still be alive next year. He proclaims to not care about living, that he’s ready to move on to the next encounter. Our children do not like him constantly saying this, but there appears to be little any of us can do about it. Maybe Sylvia will solve the problem tonight. If she’s actually psychic, she’ll know what he’s really asking and respond that she sees him living in Las Vegas for many years to come. Isn’t it funny? I don’t have any questions for Sylvia. I have a lot of stories I could tell here about things that happened before and after surgeries, some funny, some not. Here’s one though. I should have included it last time when I introduced those six children I brought into the world because this pretty much sums up the Kulesza mystique…Following the mastectomy, that evening in the hospital, all of the children were there, except Teresa. In comes a nurse, who proceeds to ask me questions in front of everybody gathered in the 3×3 area at the bottom of the bed. Next question, “Did you have a bowel movement today?” I scrunched up my face, looked at her, and said, “That’s pretty personal.” At least three of my charming children responded, “I did.” “So did I.” “Yeah, I did.” What more could I possibly ask for?

5/14/07

Yesterday was Mother’s Day, the first day I left the house since last Monday (M&M&M Day, my first Mother’s Day since I received the cancer diagnosis). We all went to Jay’s. Let me tell you about these glorious children of mine. Kathi, my first born child, is a successful business woman, never married, no children. It’s sad for me that she will never experience that indescribable feeling of a mother with her first-born child. Here’s the on-going argument about how old I was when she was born. O.K., no denying it, I was 20. If, perhaps, I’ve misled people over time (especially the older she got) that I was only 19 when she was born, here’s my excuse…She was born in February. My birthday is in November, therefore, for most of the pregnancy, I was only 19. That’s the way I remember it. I was 19, pregnant, following an April wedding, and giving birth in February, O.K., at the age of 20 (and 1/3)! The fact of the matter is whether I was 19 or 20, I didn’t know what I was doing (as most new mothers don’t know what they’re doing). But the love and happiness was overwhelming, and that began my career of love and maternal instinct. My second daughter, Susan, was born 11 ½ months after Kathi. She was a colicky baby, but I quit holding that against her a long time ago. She has more than made up for sleepless nights with her enduring love and kindness, not only to me, but in her heart of hearts. Just a reminder here of what things were like in ancient times, when I had those two little girls. I didn’t have disposal diapers, and I didn’t even have a clothes drier. Every day I washed two dozen diapers (we did have a washing machine) and hung them on an outside clothes line to dry. Not to mention, we lived in Poughkeepsie, New York! Two and a half years later, along came Jay, officially Joseph John (without the Jr.), but called J.J., until he grew into Jay. What a feisty little one, he was. At the age of 2 ½-3, he could win an argument with an adult, using logic or humor. For anyone who knows him now, I know you can picture it. If you can’t, let me introduce you to his five-year-old son, another infamous J.J. We moved from Poughkeepsie to Hyde Park, New York before Jay was born. Shortly after his birth, we moved to North Haven, Connecticut, the state in which both his parents were born. After three years there, we moved to Las Vegas, 3,000 miles away from all family. But when you’re 26 years old, you’re pretty much invincible. Kathi, and Susan and Jay grew out of being toddlers and all went to school. Just when Jay was going to start first grade, and everyone would be in school all day, along came John. What an experience John provided for the family. With three older siblings, everyone had a hand in taking care of John. Seven years later, when John was going to start first grade, you guessed it, another pregnancy. I kept telling the doctor there was something not right, the weight gain, the intense heartburn. I asked, “Are you sure I’m not having twins?” The doctor responded that I only had the parts to one baby. I don’t know why I didn’t have an ultra sound or an amniocentesis; I guess they just weren’t as common in those days. Well, the doctor was wrong, and I had the parts to two babies kicking around inside. I love to tell this story, because even though Teresa and Krista are only 27, it sounds so barbaric by today’s standards that I would have been told on the delivery table, after Teresa was born, that there was another baby about to come into the world. And, there they were, those two phenomenal little fraternal twin sisters, just about the happiest surprise one could ever hope for. Nowadays, everyone names their unborn children long before they come into the world. Twenty-seven years ago, obviously since we didn’t even know there were two babies, we didn’t have two girls’ names in mind. The hospital labeled them Twin A and Twin B. Arguments over names lasted for two weeks. With four older siblings, everyone had an idea about names…why not this one, why not that one. Finally, I said…look, we named four other children without any help, let’s make this decision, so they do not continue on as A and B. Their father had come up with some outrageous names that I did not want any part of. Since the girls were born on All Kings’ Day, people suggested to him that we name them queens’ names like Rayna and other names I’d never heard of before. I had my heart set on one name, for sure, and that was Krista…I found it in an unusual name list provided by the hospital. Joe also had a name that he was set on, and it was Teresa. To make a long story short, he came up with the idea of making a list of all the names that we had discussed and then everyone in the family could cross off so many names and add a name if it had been missed. When he went to work, I called each of the children in and had them cross of Rayna, Alice, (probably, Elizabeth), and any other queen or oddball names he wrote on the list. In the end, a great compromise was reached…Teresa and Krista. Then, one final twist in the naming baby saga brought on by the father. I thought for two weeks that Twin A would be Krista. I don’t know why…I think it’s because the older of the other two sisters’ names started with K, I reasoned that this older (by 13 minutes) sister’s name should start with a K. Right before we signed the final documents, the dad announced that he had always thought that Twin A should be Teresa. I don’t believe he had a logical reason like I did (with the K thing), but by then, I just wanted them to have names. So, there’s the story of the naming of the unexpected twin babies. How their names have affected their personalities or life directions, we will never know; but I’m sure none of us would have it any other way. On the twins’ first day of kindergarten, I related to them the story of having John just when the other three were all going to be in school all day and then repeated the experience with their births, just when John was going to go to school all day. One of them asked, “What are you going to do now, Mom?” I replied, “I’ll think of something else!” Back to Mother’s Day, 2007, they were all there to celebrate yesterday. To wrap things up, Kathi, who moved away from town 21 years ago when she graduated from UNLV, just recently moved back to Las Vegas. We all have to believe that was serendipitous, given events of the last few months. Susan (also in town) has been married for 18 years and has one child, Jason, a fifth grader preparing for his new adventure in middle school next year. Jay is married and has five-year-old J.J., the fourth generation Joseph John. Jay is also father to Ana, two years old, and a delightful little blond-haired ball of fire. Interestingly enough, her paternal grandmother’s name was Anna. John, never married, Ambassador of Quan, God-father to numerous little children, brings joy, laughter, and positivity wherever he goes. Teresa, engaged and planning next year’s wedding, is the only one not living in town. Graduating from UNR, she began her career in Reno. Now, she is in the process of moving to California to open a satellite office for the Engineering firm for which she works. Krista lives in town, has her career taking off and is trying to strike a balance of work, home, hot yoga, working out, and being there for Mom throughout these cancer experiences. Oh, do you think they know what I like?…Mother’s Day gifts: extravagant gift card for the Outback, Dirty Dancing DVD with lots of popcorn, soothing candles and cha
momile tea, and a charm bracelet with Faith, Love, a crucifix, a heart, and a pink ribbon breast cancer awareness symbol. Who would have thought?

5/11/07

Well, it’s Friday; and I made it through M&M&M Day…Mastectomy on Monday in May Day. Actually, I haven’t made it through yet; I’m still working on it. The pain is more than I anticipated, given that I didn’t think it would be much worse than the lumpectomy (wrong!). Also, two drains are better than one equals two drains hurt more than one. The bruising is quite unexpected as well. I’m bruised down to my waist, as deep a purple as is imaginable. It’s pretty scary to me, but not to the nurse in the doctor’s office. She said not to worry. And…sleep…there is no position to sleep in, not flat in bed, not propped up in bed, not on the left, not on the right. I’ve spent most nights on the recliner trying not to turn one way or the other. My Ambassador of Love, or as they say in Jerry Maguire, my Ambassador of Quan, my son John, has come over every day. We play Yahtzee or watch reruns of Law and Order or sleep through reruns of Law and Order. John has been there for every procedure for me, well except the biopsy…I was still in denial then…not telling all family members what I was going through.  It’s a funny thing about denial; there’s no point in it. As my son, Jay, said awhile ago, Bad News Travels Fast….might as well just put it out there. He was right…bad news gets around quickly, but that turned out to be good news for me. I’ve received so many well wishing messages, so much advice and input and so much support because bad news travels fast. I’m so grateful for all of the stories of survival, many from people I’ve never met, who were kind enough to take a few minutes to send a message of hope to me. Susan and Krista call periodically throughout the day. They may catch me in a down mood (yesterday was the worst, I hope), but they continue on…Susan gets on the phone to the doctor’s office for more information or to try to move up a doctor’s appointment. She came over and played nurse last night, trimming the surgical tape that so hurts the sensitive skin under the arm. Krista just keeps that strong countenance she’s managed to establish as I proceed through each day of cancer patient status. We’ve talked about her situation, being young and experiencing an up-swing in her career, being happy about personal successes, while, at the same time, helping her mother through one medical procedure and recovery after another. I don’t like being that mother. I’d like to go back to when I was her happy, busy, un-needy mother. I want to go back to some day, I’m not sure which one anymore…the day before the discovery of the lump, the day before the results of the biopsy, the day before the results of the lumpectomy, the day before the mastectomy…the day before I got on this roller coaster….the one I’m strapped into….the one that won’t be shut down or slowed down…I hate roller coasters, and I’m on one that bests any other in any amusement park! O.K., I agree, whining is not attractive. I can’t go back. I must go ahead. So, I’ll envision that day in the future when I’m used to having only one breast, when maybe my hair has grown back in after chemo, when my children are not calling every day because they’re worried, when I possibly recognize maybe not exactly the me that once was, but a new, improved, and cured me.