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Like mother, like daughter
ST. LOUIS POST-DISPATCH
05/10/2008

Everyone says that, of my mother's three daughters, I look the most like her. I have her sense of humor, her cooking talent. I'm smart like her. So maybe I shouldn't have been surprised when I got cancer, just like my mother.

But I was. My mother died of cancer at age 60, when I was a freshman in college. It started out as breast cancer. Three years later, it returned in her brain and lung. She went quickly, just six weeks after the diagnosis.

I'd been living with the increased odds and the fear of breast cancer since my mother died. But I never really thought it would happen to me.

I was too young -- just 36. I got mammograms every year. I checked my breasts.

None of that could stop the cancer from coming. The doctors told me the cause was genetic.

So when I found my lump, I bought a journal to keep a record of what happened to me and what I was thinking as it was happening. I knew it was something my mother should have done, and after all, I was just like her.

May 24, 1996: In the nearly 15 years I've been married to Dean, I've only seen him cry one time -- the day his father died. Well, today was the second time. Maybe that's why I didn't cry much when the doctor told me I had cancer. I didn't want to make Dean more upset. So I put on a brave front. I asked a lot of questions. The doctor told me I had the choice between a lumpectomy and radiation or a mastectomy. He said I had up to four weeks to make up my mind. I don't remember much more of what I asked or how he responded. I was too busy holding back tears.

When I was alone, in my car, I cried. I wondered how I would tell the news to my 7-year-old son, D.J. I wondered if I could make my 2-year-old daughter, Rachel, understand or if I should even try to explain it to her. I had talked to D.J. earlier about my lump and the possibility of cancer, but now I would have to explain a lot more.

As soon as I got home, D.J. ran to the door and asked me, "Was it cancer, Momma?" I was surprised that he had remembered I was going to the doctor that day. He must have been worried about me. I hugged his neck and told him that it was cancer.

"But my first-grade teacher and I prayed it wouldn't be," he said. "Why didn't God listen to us?"

It was all I could do to keep from crying in front of him. I told him that I was going to be OK.

May 25: I told my dad today, and I could tell he thinks the worst. He kept moaning and saying, "You know I don't like to hear this" with every detail I gave. I know he's got to be reliving my mother's illness. He thinks I will die, just like she did. I asked him if he'd call my brothers and sisters to tell them. I didn't want to repeat the story any more.

May 30: I decided today that I would have the lumpectomy. All of the doctors I have consulted say that the success rate is the same for either surgery. And it would be easier on me and my family if I did not go through all of the surgery required for breast reconstruction.

June 12: It seems like this day has taken forever to get here. I want to get the process of healing started. I want to know if the cancer has spread to my lymph nodes. Dean and my mother-in-law went with me to the hospital. I was nervous about the surgery but prayed for peace and strength. I had my prayers answered. Before I knew it, I was in post-op. Dean had bought me a stuffed animal, his way of saying he loves me. I was in pain, but I wanted to go home. We left the hospital at about 8:30 p.m.

June 18: The last six days have been a blur. I've had a lot of pain -- mostly with the incision under my arm where they took the lymph nodes. One of my aunts said this was the worst part of the surgery for my mother, too. "Your mother used to call me and cry and cry about how badly it hurt," she said. "She used to stand in the shower under the warm water because that was the only thing that made it feel better."

June 19: Today, I got the pathology on the lymph nodes; the cancer had spread to two of them. This was worse than I had hoped for. Dean was upset about the news. "Why can't we ever get a break?" he wondered. We cried together about the effects my illness was having on our family, especially D.J. I know D.J. is really scared. He hasn't slept in his own bed since I got my diagnosis. He's having nightmares. I've got to talk to him again.

I had an appointment with an oncologist today. He told me that I would need chemotherapy. He said that on a scale of 1 to 10 (10 being the most aggressive), my tumor rated a 9. I felt lucky that I had found the cancer before it had spread any further. He also said that my age made my risk for a recurrence higher because of my life expectancy.

The doctor said I would need four cycles of adriamycin and cytoxan. He said he wanted to give me the drugs every two weeks instead of the usual three-week cycle so that he could get me as close to a cure as possible. Side effects would include hair loss, diarrhea, constipation, rashes, fevers and nausea. I was beginning to think Dean was right. Couldn't I get a break? Wasn't there some way I could get out of this?

June 20: I went to D.J.'s hockey game tonight. Dean, who usually helps to coach the team, sat in the stands with me instead and helped to mind Rachel. After the game, D.J. said that some of the other boys had wondered why his dad wasn't coaching. "I told them it was because my mom has cancer," he said. His voice was so sad that I started crying. What a scary thing it is to have a parent with cancer.

June 24: I got a second opinion today from another oncologist. He told me something I had not heard before -- the pathologist was not certain that the surgery had gotten all of the cancer. He said a further re-excision of the area or a mastectomy may be indicated. I cried a lot in front of the doctor, and I think he misinterpreted my behavior as being upset with him. But how could I not be upset? I was all set to start chemo and now he tells me I'm not through with surgery yet! Apparently, the first oncologist had not seen the full report when I had seen him. So I am faced with the decision between lumpectomy and mastectomy again. I feel really tired.

June 26: What an emotional roller coaster. After consulting with all of the doctors again, I have decided to have a mastectomy. I feel I have no other option if I want to survive. I tried to set up breast reconstruction immediately following the surgery, but the plastic surgeon could not do it. So I will wait.

I feel really emotional about losing my breast. Dean says it doesn't matter to him, but it matters to me. I am afraid of how I will react the first time I look down and see nothing. I think I can deal with it if I can just get over that initial reaction.

When I told D.J. what I have to do, he cried. He was worried that he would get breast cancer, too. When I told him that most men don't get this, he wondered if Rachel would get it, if she would have to have her breast removed. I told him I hope that by the time Rachel grows up, there will be a cure for cancer. By the end of our talk, D.J. was laughing, but I was more worried about him than ever. I don't want D.J. to have to suffer through this again. That's why I've got to be aggressive with this thing.

June 27: I had the mastectomy today. Before I went in, a woman from my church came over and prayed with me. This really helped me. I wasn't afraid about losing my breast anymore. I went to the hospital, and I was overcome with emotion because of the outpouring of love I received. So many people were waiting to see me when I got out of surgery that the nurses threatened to throw some of them out. I got flowers from the people I work with. My stepmother put cool compresses on my head, fed me ice chips and fluffed my pillows. My brother, who had bypass surgery earlier this year, squeezed my hand so tight, he almost made me cry.

June 28: My insurance company forced me to go home today. Can you believe it only pays for 23 hours of care following a mastectomy? No one else can believe it either. Anyway, when I got home, my mood changed quickly when I saw all of the flowers. I had received a dozen arrangements, including three dozen long-stemmed roses from Dean. He sent me one dozen for each of the three surgeries I had been through. Thank goodness my mother-in-law helped out with the kids and spent the night. I don't know what I would have done without her.

June 29: Dean helped me to take a bath today, and when I look at my incision, I feel remarkably calm. I think I just look flat on one side. The scar is not ugly, either, although it is very long. Dean acts like it's no big deal, and he's right. I feel lucky to be alive.

June 30: The food train started today. The mothers of the children in D.J.'s class will bring food over for the next two weeks. One of the mothers brought meat loaf, green beans and rolls tonight. What a wonderful gift! I felt good today; I'm mending.

July 10: I'm feeling a bit frightened about tomorrow; that's when I start chemo. I know I must do it. My aunt said my mother did not have chemotherapy and my aunt said she always thought that was odd. She said the doctor told my mother that they had gotten all of the cancer. I wonder if my mom would still be alive today if she had gotten chemo.

July 11: Chemotherapy is a very civilized procedure for such a savage treatment. Up to four patients sit in a small room on blue vinyl reclining chairs. The room is painted hospital green but has no decorations except a poster that says something about oncology nurses. The patients, who include a good number of men, sit around and chat about the weather, sports and their kids as the cancer-killing drugs drip into their veins. The nurses offer soft drinks and hard candy. Cancer is rarely mentioned. My first experience with chemo ended badly. I got finished with my treatment at about 2 p.m., and I felt good until about 6:30 p.m. Then, as I was sitting on the couch watching TV, I started to feel very nauseated. It was horrible. Wave after wave of it came. I did manage to eventually fall asleep about midnight.

July 12: I woke up this morning still nauseated. I called my doctor at 8:30 a.m., and his nurse called back with a prescription for some suppositories to help with the nausea since I wasn't able to keep any pills down. I guess they helped a little. Anyway, by about 9:30 p.m., the nausea seemed to have run its course. Chemo was giving me the strangest sensations. I felt like my blood was boiling, like there were little live micro-somethings zooming around killing cancer cells. I also felt like I had swallowed chlorine bleach. The smell was coming out of my mouth, my nostrils, my pores, my urine. I couldn't get rid of the taste or the smell. I hope tomorrow will be better.

July 13: I ate small amounts and slept most of the day. Toward evening, I was able to sit up for short periods. D.J. is having trouble coping with my reaction to chemotherapy. He doesn't understand why doctors, who are supposed to help make me well, would give me something that would make me so sick.

July 15: Went back to work and was overwhelmed by people wishing me well and surprised by my being back already. It felt good to be back at work. I feel pretty much back to normal, but I still have a slight headache. I don't quite feel like I'm thinking clearly. I guess it's the chemo. I hope it's not the cancer.

July 24: My hair started to thin today. It wasn't much; maybe about 100 hairs. My hairdresser said this was normal, but it was a lot for me. I hardly ever lose any hair when I shampoo. I'm hoping it will stop.

July 25: I was supposed to get my second chemo today, but my white blood cell count was too low. It was 500; normal is 2,000. Because of my low cell count, I have to give myself daily shots in the stomach with a drug that accelerates the growth of my bone marrow. The nurse made me practice giving the shot to a flesh-like pad I had strapped to my leg. After a few tries, I poked my stomach with the nurse cheering me on. I hope I can do this.

July 26: More hair fell out today. I'm beginning to panic about this. I want it to stop now.

July 27: My hair came out in clumps today when I was washing it, and now I have a bald spot on my right temple, but it's temporarily covered by hair. My hair is probably half gone now. To take my mind off things, I took the kids to see "The Adventures of Pinocchio." It was fun. When I came home, I was tired and cold, so I napped for about two hours. When I got up, I was running a fever of 102.5. I called the doctor. He gave me a prescription for an antibiotic. My temp went down after a couple of hours.

July 29: I wore my wig for the first time today. I got it fitted before I went to work, but I still felt very self-conscious about it. When I got out of my car, a co-worker said: "Wow, your hair looks great today. Did you just get a perm or something?" I was thrilled. But then, what can I do? I have to live with it until my hair grows back. My husband says he thinks it is a very close match with my real hair. My mother-in-law says she likes it better than my real hair. My daughter calls it my pretty hat. D.J. doesn't say much about my wig. When I showed him my bald spot, he sighed and said: "Man, all of the bad stuff is happening to you."

July 30: I was all braced for my second chemo today, only to be faced with another delay. This time my port-a-cath (a device placed under my skin near my collarbone through which my chemo is given) wouldn't work. The doctor sent me to have a dye study done to see if there is a blockage. There isn't. But the port-a-cath tube is against the vein wall, preventing drugs from going in and blood from coming out. I hope I can get chemo tomorrow. I just want to get this over with.

Tonight I got fed up with my hair shedding, so I went into the shower and combed through it until all of the rest of it came out. Other than being very white, I really don't think my head looks too bad. Unfortunately, my dog, Bailey, doesn't agree. She barked and growled at me until I put on a turban.

July 31: Got my second chemo today and did much better. The nurses said they'd like me to come in every day (no thanks!) because everyone behaves while I'm there. I guess I do laugh quite a bit while I'm getting treated, but it must be nervous laughter. I still felt very weak after my treatment, but I did not have any nausea. The doctor had given me a prescription for some different anti-nausea drugs. Maybe all it took was the right combination of drugs to get me through.

Aug. 5: Bald may be beautiful, but it's definitely colder. So I've started sleeping with a turban on. This is no small challenge. One turn too many and you've tossed your turban.

Aug. 9: Today was casual day at work, so I decided to leave the wig at home and wear a fancy cap and turban. I was pleasantly surprised to find that all of my co-workers had donned hats, too.

Aug. 14: I was supposed to get my third chemo today, but things are not working out. My white blood cell count is lower than before -- 400. So chemo must be delayed. I am supposed to leave with my family for our annual drive to Florida on Saturday, but it's not looking too good.

Aug. 15: One of my brothers called me today to check up on me. When I told him about my low blood count and reminded him of my vacation plans, he read me the riot act. He said I was not taking care of myself, that I was not getting enough rest. He said he hoped I was planning to rest on my vacation. Maybe I shouldn't be working full time, he added. Everyone in the family felt the same way. When I started to cry, he softened his tone. He said everyone was just worried about me and they wanted me to take care of myself. This was an important time for me, he said. I was fighting for my life.

Did he think I didn't know that? Anyway, there was nothing I could do about my low blood count. It was caused by the chemo drugs; they attack good and bad cells. Even if I stayed in bed 24 hours a day, it wouldn't help my blood counts recover.

Aug. 17: I got my third chemo yesterday and, believe it or not, I felt good enough to get in the van today and head for Florida. Last night Dean kept telling me I was going to be all right; that I would be fine for the trip. Dean has kept a positive attitude throughout this whole thing; almost too positive. Sometimes I think he's in denial about my illness, but how could he be? He is a doctor. He's always asking me to go ice skating or play golf. But it's all I can handle to go to work, come home, make dinner, get the kids bathed and in bed. And can't I have a down day once in a while? I know he's trying to help, to be my own personal cheerleader, but I need to be down, to just heal.

Aug. 25: Vacation was great -- Dean and I played some golf and the beach was beautiful -- but emotionally, I was not with it. I guess I have been feeling sorry for myself. I felt very self-conscious on the beach, what with my port-a-cath protruding and my lack of hair. I noticed a few people staring at me, wondering what was wrong with me. And whenever I saw another young mother, I looked to see if she had scars like me. I didn't see anyone else like me. I wonder why I had to be the one to get cancer.

Sept. 10: I had my last chemo on Wednesday, the 4th, and today is the first day I felt like writing. I had a bad reaction this time again. Each day has been better, but the first three days were hard. I guess Rachel is getting used to being told that Mommy is sick because she asks me every day, first thing, if I feel better today. My poor baby!

Sept. 11: The radiation therapist told me today he didn't think I needed radiation treatments. He said after reviewing my case and some recent studies, he felt the radiation would only reduce my chance for a recurrence under my arm by 2 percent. I know I should have felt happy and excited about this, but what I felt was confused. I thought the radiation therapist had already decided I needed radiation. All I can do is get a second opinion. I want to make sure that I make the right decision.

Sept. 12: I heard today that a woman I met about two months ago, another breast cancer patient, died. She was only one year older than me and had two small children, too. Even though I had only met her once, her death frightened me. How do I know whether I'll be a cancer survivor or whether I'll be like her -- have a recurrence and die? While rocking Rachel to sleep tonight, I started crying uncontrollably. Wasn't it bad enough that I lost my mother when I was 18? Would my little girl lose her mother at an even younger age?

Sept. 19: I saw a second radiation therapist, and I liked him immediately. He spent more than an hour with me. He said that although the chance of a recurrence under my arm was slim, the chances for a recurrence on my chest wall or neck area were 20 to 25 percent. He said that made me a borderline case for radiation treatment. I asked him the same question I have asked all of my doctors during this experience: If I were your wife, what would you tell me to do? He said he would tell me to have the treatmen t. With radiation, he said, I can bring my risk of local recurrence down to under 10 percent.

Sept. 24: After talking it over with my oncologist and my husband, I've decided to undergo radiation. I cannot start the treatments until Oct. 14 because of the drugs I was taking during chemotherapy. I will undergo treatments five days a week for six weeks. The side effects should be minimal -- probably just a sunburning of the area being radiated, and fatigue. I am happy, in a way, that my treatments are not over. I have to do all I can do, take every treatment I can take, to prevent the cancer from coming back.

Sept. 25: I underwent minor surgery today to remove the port-a-cath. I guess that officially marks the end of chemotherapy. I am relieved to get it out because I'm one step closer to the way I was B.C., Before Cancer. Now instead of having a big lump near my collarbone, I've just got a little scar. If only my hair would start coming back!

Oct. 1: I saw the oncologist today for my one-month checkup after my last chemo. He said my physical looked great. I told him I had been experiencing a new side effect -- hot flashes -- for the last couple of weeks. The chemo stopped my menstrual cycle, and my body thinks it is in menopause. I haven't had a good night's sleep since the hot flashes began because I wake up sweating, throw the covers off, get cold, put the covers back on, then get hot all over again. I am having about 10 episodes like this a day. My oncologist offered me a prescription to help, but I didn't want it. I've had enough drugs.

Oct. 9: It's been five weeks since my last chemo treatment and still no hair. My oncologist said it should start to grow back between four and five weeks after the last treatment.

Oct. 10: Still no hair. In fact, I think I have less hair than I used to. My eyelashes and eyebrows are almost completely gone. I've given up trying to put mascara on because more of it gets in my eye than on my eye. I have no nose hair, no hair under my arms and no hair on the top half of my legs.

I've also gained 13 pounds. Believe it or not, it's more common to gain weight than lose it on chemotherapy. People who experience a lot of nausea, like I did, are told to keep something in their stomachs at all times. And eating more leads to weight gain. Just my luck. I had just lost 14 pounds through diet and exercise before I found my lump. Needless to say, the weight gain combined with my hair loss and the loss of my breast is not helping my self-image.

Oct. 11: I woke up this morning with blond peach fuzz all over my head. Hair! Finally! I hope it grows in fast enough so that I'll be wearing my own hair by Christmas.

Oct. 13: Everyone who has undergone chemo and radiation says radiation is a piece of cake compared to chemo. I guess I'll find out tomorrow. Right now, my biggest concern is what to wear. I know that seems silly, but the ink used to mark the area being radiated stains your clothes. The doctor suggested I wear one of Dean's undershirts under my clothes so they don't get ruined.

Oct. 14: Radiation was very strange. The technicians had me lie on a table in this cold, dark room, while this huge machine moved all around me, throwing red laser beams across my body. Then the technicians marked my body with a purplish dye that smelled a lot like a permanent marking pen. The radiation doesn't feel like anything. All you hear is a buzzing sound.

While the technicians were marking my body, I had to raise my right arm over my head, grasp a bar, and turn my head as far to the left as I could. It was difficult to hold my arm at that angle because it hasn't totally recovered from the removal of my lymph nodes there. And I had to hold it without moving for 30 minutes. After about 10 minutes, my arm started to shake and then it started to hurt. Pretty soon tears were streaming down my face, but I couldn't move, so I couldn't wipe them. Thank goodness I only have to go through that procedure once.

Oct. 15: Had my second radiation treatment today. I'm getting radiation in three different spots; two different angles on my chest wall and one on the area above my collarbone. I'm under the beam for a total of about 90 seconds. I didn't see the radiation oncologist at all today. The nurses say that I'll see him only once a week now unless I am having a problem.

Oct. 16: The hair on my head is really starting to be noticeable. D.J. and Rachel like to run their fingers through what little there is of it. D.J. says it feels like cat fur. It is very soft.

Rachel noticed the radiation mark on my neck and wanted to know who put that mark on me. Later, D.J. asked about my radiation treatments. I showed him my markings and explained how the doctors used the markings to show them where to shoot a beam to make the cancer go away. I told D.J. I would be through with radiation by Thanksgiving.

I think D.J. is feeling less worried about the cancer. He knows the chemo is over, he sees my hair coming back and he can see that I'm feeling better. He certainly is curious about the radiation treatments. He never once asked me what the chemo was like.

Oct. 17: The other day at work, a co-worker walked by me and said: "There she is. The girl with the prettiest hair at the Post-Dispatch." I couldn't keep from laughing. I wished that I would have had the nerve to pull off my wig and say, "Here, you can have it if you like it so much." It was so traumatic when my hair fell out, but now I joke about it almost every day. As soon as I walk in the door from work, I peel off the wig. My family doesn't even notice my bald head anymore. To them, I'm just mom.

Oct. 18: We celebrated D.J.'s eighth birthday tonight at Pasta House. The highlight of the evening was when the waiters brought D.J. a piece of cake and sang to him. I couldn't help but notice how much tensions over my illness have eased in my family. Dean seems more relaxed. D.J. has started sleeping in his own bed again. Rachel has quit asking me if I feel better. Things seem to be getting back to normal. If I didn't have to run to the hospital every morning, I might not even think about the cancer.

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