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There are three blogs I read regularly — all three written by women with breast cancer. Adriene was diagnosed at about the same time as me, and is recovering from a mastectomy and reconstruction and chemotherapy. Her hair is short and dark now like mine and I follow her progress because it’s similar to mine and because she is a beautiful writer and photographer. Sandee, another woman and mom of three is undergoing chemotherapy regularly to manage breast cancer that has spread to various parts of her body over the span of several years. As chemo takes a toll on her daily life, she continues to fight and to inspire others through her words. And Dori, a mom of two who has been battling breast cancer and its spread, has just welcomed hospice into her home as she has chosen to stop the constant chemotherapy that is robbing her of a quality life. She is brave and courageous and her spirit is powerful and touching and uplifting.
Visiting with these women through their journals is motivating and encouraging. It allows me to find meaning in my own personal struggles and triumphs. It helps me harness the power that cancer has over me and the fear it instills in me. It helps me to live in the moment. To enjoy every moment. To be thankful for every moment.
Thank you Adriene, Sandee, & Dori.
Today I got some answers. I learned that the bump on the roof of my mouth appears to be normal and is maybe just a swollen gland. My dentist says the tissue looks pink and healthy and the bump should go away on its own. He will check me again in six weeks or so when I go for a cleaning. If it continues to worry me, he will look at it again.
I also learned from my OB/GYN that I am anemic. My iron should be at about 14 and it’s 10.8 which is moderately low and is perhaps why my fatigue is so extreme on some days. I will take an iron tablet each day and will investigate this further when I see my oncologist in a few weeks. Otherwise, I got a clean bill of health from this visit.
My day ended with my sixth dose of Herceptin. Tracy visited with me in my private infusion room and the time passed by quickly — a blessing given that I’d been in the care of doctors since 9:45 AM.
When I returned home at 5:15 PM, I was greeted by Danny’s warm welcome as he raced into my arms, hugged my tightly, and flashed his oh so sweet smile. He brightened my day!
About a week ago, I felt a small bump on the roof of my mouth, approaching where my throat starts. I could feel the bump with my tongue and then it would disappear or flatten a bit and I’d forget about it. Then it would come back but disappear again.
So tomorrow I am going to the dentist to have it examined. It could be a canker sore, something swollen from the cold and cough I had recently, or something completely not worth worry. But I worry about everything and anything that pops up — literally pops up, like this bump. I am hoping the dentist looks at it and says “no big deal” but I worry he’ll say he needs to take a piece for biopsy. And then will begin the same path I went through one year ago — the quest for answers about a suspicious bump. So I am unsettled tonight. Writing helps.
After the dentist tomorrow I go for my annual GYN visit which means I’ll get a breast exam and a PAP test — both screenings for cancer. Then I go for chemo and spend the rest of the day treating cancer. The theme of the day — cancer — is not so comforting.
This is when I have my darkest moments — at night. Right now my boys are sleeping. It’s quiet. And my mind wanders. I think this wandering will never really end and is a result of facing a life-threatening illness. Before cancer, I may have ignored this little bump in my mouth. Now I think the worst.
My friend Amy in Ohio is about to receive her second chemo treatment on Friday. She is dreading the day after feeling poorly from her first dose. Her hair has started to fall out, she feels mentally defeated, and she is not sure how she will make it to February, when her treatment ends. I sent her an e-mail the other day. These are some of my words:
“Don’t forget that no one can be strong all the time. We all have strong days and weak days and days in between. You are stronger than you know but that might not be clear to you until you are able to look back on the worst of this journey.
One day at a time! And somehow, February will creep up on you, just as one year is creeping up on me even though there were days I thought I would not survive.”
I’m not sure how it happens, but as time passes, the bad moments do seem to blur. I guess it’s like the pain of childbirth that for me, I canï¿½ï¿½ï¿½t even describe anymore.
I can remember how repulsed I felt each time I walked into the infusion center for my first chemo regimen (the one that poisoned my body, took my hair, and landed me in the hospital two times) but it’s not crystal clear anymore. I can remember the bloated feeling I felt in my body after those chemo treatments and from the steroids that I was given prior to each of my four doses. But it’s a distant memory and only when Amy complained of her response to chemo did I recall how uncomfortable I was riding in the car with my mom and my boys on several occasions, my pants fitting tightly and my stomach swollen from drugs. I remember feeling generally unwell but the specific feelings are not so clear anymore.
I have gained clarity through this trek, though. My thoughts are not so cloudy anymore. My emotions are not so unorganized. And my fears and worries are easier to explain. I do not fear the unknown as much as I once did and I am confident that if cancer comes back, I can fight it again.
It’s taken almost one year to reach this point, the point at which the unpleasant moments are getting foggy and my path forward is getting more and more clear. Amy will reach this point too. I promise you will, Amy.
It feels good to know that Herceptin is such a promising drug. Just today, after receiving my fifth dose of this treatment, I heard on ABC news that Herceptin is simply a wonder potion. In fact, the drug was taken out of clinical trials early so doctors could start putting it to use. The results were that good.
It also feels good to know that through other people’s eyes, my hair looks good. Today while at the Cancer Center, a physician assistant said it was “gorgeous.” Another woman admired my hair while we stood in the infusion center. A 36-year-old lymphoma patient whose hair was just beginning to grow back, she was speculating about how her hair would look once it was as long as mine. As long as mine. It does seem long compared to the days when all I saw was a shiny scalp. But when I consider that it’s been eight whole months since my hair started growing, my dark locks don’t seem that long at all. It doesn’t seem that gorgeous to me either. Some days I do like it. I like that it’s easy. I like that it looks stylish on a good day. I like the dark color sometimes too. But mostly, I am struggling to accept my new look. It’s strange to look in the mirror and recall the blond, straight hair I had for 34 years. I never would have cut my hair this short, or added so much dark curl, so to look at this extreme makeover is still startling. It’s minor really. I am alive and would give up all my hair forever if staying alive was guaranteed for a really long time. But in the here and now, it’s an adjustment. The compliments help, though. It’s flattering to know others like my hair. One day I may really like it too.
Despite the promise of Herceptin and my still overall feeling that I am going to survive my cancer battle, there are moments when I feel so unlike I once felt. Maybe it’s the hair that changes my whole appearance. Or the port that sticks out of my chest and today shows where a needle stuck me twice — once so painfully I wanted to scream. Maybe it’s the thought every time I wash myself in the shower that I might find another lump. Or that chemo is not preventing cancer cells from traveling through my body. Maybe it’s the mammogram I will receive in November — the first one since my breast cancer diagnosis. It could be anything — and it’s probably everything — that has changed my life, my perspective, my hopes and fears.
These chemo days bring everything to the forefront. They remind me of what I’m fighting for — my life. And that is daunting. But also a reality check. And now I can proceed with the next three weeks, thankful that I am right now a healthy and productive recipient of the life-saving Herceptin — with a head full of thick, dark, curly hair.
The American Cancer Society people were grateful for the amount of money I raised for the Making Strides Against Breast Cancer walk. But I didn’t really do all the work — the 50 people who opened their wallets and generously shared their hard-earned money are the ones who did most of the work. I am grateful for these people — family and friends and friends of friends. They shared a total of $3,310 and made me the top individial fundraiser, second to a team of people that raised about $5,000. This morning, after the 5K walk, I was presented with a special keychain to acknowledge this significant contribution. I will carry this keychain with me each day and will never lose sight of why I have it — because of the support and love and concern that still flows richly in my direction.
Walking with me today were my mom, Tracy, and Jordan. We traveled 3.2 miles together and joined upwards of 1,000 people in pink and white shirts. We saw women and men and babies and kids. We saw bald heads and short hairstyles like my own. We saw survivors and their friends and family members. We saw a network of strength and power and unity.
My strength comes from my own personal network of supporters and caregivers. My boys — John, Joey & Danny — who were in my audience today and are with me for every moment on this journey. My mom, Tracy, and Jordan — my female companions on this ride. My family and friends who lift my spirits, brighten my days, and endlessly motivate me.
Raising $3,310 is not my own accomplishment, although I was rewarded for it today. This success belongs to so many other people. And the American Cancer Society is not the only beneficiary. I am too. This financial gift is a tangible indicator of all the love and support I have circling me each day. And for that, I am truly grateful.
I have a card hanging on my refrigerator — it’s a card with a picture of roses and a pink breast cancer ribbon. It’s from my friend Nicole in Ohio — she sent me a beautiful bracelet in the mail the other day with this pretty card. Joey just noticed the card today. He looked at it and said, “Is this cancer?” I asked him what he meant and he replied, “Is this card cancer?” He must have recognized the pink ribbon which he has seen around our house and in the community too — especially since this is breast cancer awareness month. I told him the ribbon signifies cancer. And I asked him if he knows what cancer is. He said, “It’s medicine and love.” I think he’s right in a simple sort of way. For him, cancer translates into medicine. For almost a year now, he has been shuffled around during my endless doctor appointments. He sees my port and knows that’s where medicine goes. He saw me in the hospital connected to tubes full of medicine. He sees my pill case that sits on the kitchen counter. He knows medicine made my hair fall out.
And he knows cancer means love. How could he not? He’s seen people deliver meals and send flowers. He stood on the front porch with me when friends delivered my hand-made quilt and and he watched me open my new bracelet from Nicole.
The love is endless — as is the medicine. And Joey’s wisdom continues to amaze me. I never knew a 4-year-old could be so smart.
On Saturday, my mom and I attended a half-day seminar on the topic of breast cancer. It was sponsored by Shands Hospital and many of the speakers were my own medical people — a surgeon who took my blood prior to my lumpectomy for research purposes, an oncologist who treated me both times I was hospitalized during my first chemo regimen, my physical therapist, and the woman who coordinated my initial care when I was first diagnosed. I already knew a lot about what they talked about but I learned that there is a lot on the horizon for breast cancer detection and treatment — like new radiation techniques that can limit the treatment time from seven weeks to just one week and methods for detecting the smallest trace of breast cancer before it begins to grow. My physical therapist is studying cancer-related fatigue (I think I have it!) and how to manage it. It amazes me that these medical professionals are spending their work days seeking cures and miracles. What a huge responsibility. What a noble cause. I am lucky to be in their care.
But after hearing about all the science and hope and possibilities, I am reminded mostly of one loud and clear message I heard on this day. The oncologist spoke about the components of breast cancer tumors — there are about six criteria that are taken into consideration when studying a tumor, such as age, stage, grade, lymph node status, hormone receptivity, and HER-2 status. My criteria are: age 34 at diagnosis, stage 1 (out of 4), grade 2 (out of 3), lymph node negative, ER/PR negative, and HER-2 positive. Some of this is good; some not so good. A balance that has left me feeling okay about my personal situation. But the oncologist said, “even a good tumor in a young women is a bad tumor.”
I guess I knew this. My age is what qualified me for aggressive treatment — because young women have the most aggressive tumors. But to hear it spoken in a formal teaching setting, and in somewhat of a grim tone, is troubling. But I’m OK. I’m not wounded by this bit of information and I’m not anxious like I once would be. I still feel like I am winning my battle, so I can take this in stride. And if cancer comes back to me one day, I’ll just keep fighting — like this young woman who is quoted in the book, “Hope Lives: The After Breast Cancer Treatment Survival Handbook.”
“Why do I keep going through treatment when there is no permanent cure? I ask myself this every time. There are no options other than death, which to me is no option. It’s not that I fear death. I really don’t anymore. I just love life too much to quit. It’s a race against time. Treatment buys me time until they come up with new drugs or new ways to treat this illness. I’m not quitting.”
Robin, age 38, diagnosed 1996, 1998, 1999
Last night I read this in the August 2005 Family Circle magazine:
Better Breast Cancer Treatment
A combination of drugs can significantly decrease cancer recurrence in women with the disease known as HER-2 positive breast cancer, according to multicenter clinical trials sponsored by the National Cancer Institute. Nearly one out of four cases of breast cancer is HER-2 positive, says lead researcher Edward Romond, M.D. These women have an overproduction of the HER-2 protein in cancer cells; this speeds cancer growth and increases the risk of spreading. For the trials, 1,679 women with HER-2 positive breast cancer in their lymph nodes received chemotherapy alone and 1,672 with the same disease received chemotherapy and weekly injections of trastuzumab for 52 weeks. After three years, those who received trastuzumab and chemo had a 52 percent dip in cancer recurrence compared to women who received chemotherapy alone. Side effects include weakening of the heart muscle; however, most patients regain normal function, says Dr. Romond.
Today, I received my fourth dose of trastuzumab, also known as Herceptin. I fit the profile of the women who received chemo first and then Herceptin injections so the hope is that over my own 52-week treatment, my chances of recurrence will decrease. Unlike the women in the study, I did not have spread to my lymph nodes — but I am young and young women typically have more aggressive tumors so my treatment plan follows a somewhat radical approach.
My actual Herceptin treatment does not feel so radical because I don’t feel much at all. I just sit while a clear liquid drips through my port and into my jugular vein and then spreads throughout my body. I don’t get sick. I won’t lose my hair. My blood counts do not suffer. Besides some fatigue, it’s okay. And a bit relaxing too.
Today I slept in my reclined pink chair. It was quiet — I was one of three or four patients and the nurses worked at a more leisurely pace than usual. It was peaceful. But the whole chemo experience is still emotional and challenging. It doesn’t matter if the infusion room is overwhelmed with activity or quiet with just a few patients — I am still painfully aware of the obvious: that we are all there to fight for our lives. It’s empowering, and it’s sobering.
This evening, I came home and resumed my usual activities and got back to life — not without thinking about the importance of my every-three-week infusion but with a dull notion of it all. The power of the day will continue to fade over the next three weeks, until I report back to the pink chair and it all becomes crystal clear again — a reminder that life is precious and delicate and worth fighting for.
On Thursday, Joey received an award at school — for patience. He and four other children were presented with certificates — this happens once per month where one child from each class is awarded for a certain character trait. This month’s trait was patience, and all five winners were called to the front of the chapel at Abiding Savior Lutheran Church / Preschool where teachers presented the certificates and the director read aloud a special message for each person. Danny and I watched Joey standing proudly (and several feet taller than the other kids) next to his teacher and we listened as the director read, “Joey always waits patiently when it’s someone else’s turn to talk or do an activity. He is never pushy and he never complains.” The bible verse chosen for him was, “It is better to be patient than powerful; it is better to have self control than to conquer a city.” Proverbs 16:32.
This verse is perfect for Joey — it is completely him. And on the day I sat in the chapel, hearing it for the first time, I felt that this verse was somehow intended for me too. It seemed that the director was speaking to me — telling me to be patient with my new job, patient with the transitions in my life, patient with life in general. Maybe she was speaking to both of us — Joey for his patient character and me for the patience I need to embrace.
I have two favorite quotes that help guide me in life. One quote is, “Be kind. Everyone is fighting a battle.” The other is, “Be patient. Miracles happen every day.” How fitting.
I have two friends who were recently diagnosed with cancer. Both women are like me. They are in their 30s with small children and husbands and jobs and with the previous notion that cancer would not happen to them. But for reasons unknown, it did happen. And now they are both embarking on the journey that began for me almost one year ago.
We are on common ground, in some ways. Our lives are thrown out of balance and we share the same disbelief and fear and worry. We all fight to keep life as normal as possible, while managing appointments and tests and treatments and families and emotions. We question our strength and learn that we can handle more than we ever imagined. We are all survivors.
But our individual paths are different. While one friend has breast cancer like me, our diseases are very different. Our tumors were different sizes and in different locations. Our staging is different. Our treatments are not exactly the same. My other friend, who learned of her diagnosis just two days ago, has renal cancer. She will have her right kidney removed in a few weeks and will find out then what treatment path she will follow.
I am so sad that my friends have to travel this bumpy road. But I am confident they will reach the end of the road safely and with a beautiful perspective on life. I am thankful they are in my life so I can draw from their strength. I am in good company.
Sometimes I am worried about what people think of me — I guess we all are to some degree. Tonight I am wondering if the my new co-workers think I am a crazy person.
Today was my second day on the job at Joey’s preschool — now Danny’s preschool too. I work two afternoons each week and Joey and Danny get to play in their own classrooms and on the playground too. I am back and forth between the classes and the playground so I see my boys off and on all afternoon. This is nice — to be with my kids while I work, to see them interacting and socializing, to witness their beautiful moments — but it’s difficult too. I’m their mom and they to cling to me at times. They want to listen to me and not other teachers. They fight the system a bit when I’m present. This makes for quite a transition — in addition to the transition of learning the ropes of a new job and new routine. It’s a transition that brought me to tears today. Not such a bad thing except that it happened in the midst of my work day, in the presence of one co-worker and many kids. I was as discreet as possible with my emotional spillover but it was still obvious and Joey came to me and said “I love you.” I thanked him and he said, “Sometimes when people are sad, it’s nice to say I love you.” A beautiful moment.
I’m still — hours later — having trouble managing my emotions. I feel like I did months ago when I could hardly talk about cancer to those who asked about it. That’s when counseling and anti-depressants were prescribed. I’m not sure why I reacted like I did today. I haven’t had a job outside my own house in a long time. Maybe I’ve been cooped up too long and don’t know how to act. Maybe I have not healed enough emotionally to take on such a demanding job. Maybe it was just a bad day. I won’t be sure until I practice at this job a bit more. When I have, I’ll see what my gut tells me and I’ll follow my instinct.
Today was my first solo chemo mission. I went by myself, sat by myself, entertained myself, and drove myself home. It seemed time I handled this chore on my own. I am able to do it by myself. And it seems there won’t be any emergency situation that results from this drug. So I don’t need a safety person with me. I’d rather my mom and sister go about their routines for the next 10 months without having to sit with me each time for hours and hours. I can handle this routine now. Company is nice — but being alone is nice too. For me, it’s like enjoying a walk with others but finding equal pleasure in walking alone with my headsets on. Just me and my music.
Today it was just me and my thoughts. It was quiet and peaceful. And I survived my third treatment of Herceptin. One step closer to the end.
Danny listened to his teachers today like a little soldier. Today was his first day of school, and he accepted this new experience like a champ. I dropped him this afternoon in his class, and he took his teacher’s hand and never looked back. He marched onto the playground, in line with his new toddler friends, and he joined Joey and the big kids in the sand pit. He lined up at naptime, marched back inside, and rested on his mat with his favorite blankets, in a darkened room with lullaby music swirling around him. His teacher rubbed his back, he fell asleep, and he woke up to a snack of Oreo cookies and juice. After he gobbled up his snack, he said, “more bite for me.” His teacher told him maybe next time he could have more.
Danny will attend school two afternoons each week. I had not planned to send him to school so early in his life but I am beginning a new job at the preschool and Danny and Joey get to take part in the festivities while I work. I will work Wednesday and Thursday afternoons for now and will alternate working with the 2-3 year-olds (Danny’s group) and the 4-5 year-olds (Joey’s group). Today I was mostly with Joey’s group because I wanted to test Danny’s ability to go it alone. He conquered the task.
I considered asking about jobs at Joey’s preschool a few weeks ago. And I never did. But a sign appeared on the school door last week soliciting interest in working in the extended care program. I inquired about the opportunity and so did another mom. Neither of us want to work much so we will share each week. She will work three afternoons and I will work two. It’s perfect. I get to be productive, in a minimal way, and my kids get to play with other kids, for free. I get paid and Joey gets a discount on his tuition. He will still go three mornings per week for his Pre-K program — the afternoon play is just a bonus for him. And I think this is just what Danny wants. Each morning we take Joey to school, he says, “me school too.” He is in heaven, and his teachers today said he was right at home in his classroom.
It amazes me how different two kids from the same parents and the same household can be. Joey was clearly not ready for school until this year, at age four, and I am still sensitive about how this new experience affects his delicate personality. Danny, at age two, is a go-with-the flow kind of guy who takes to change easily and happily agrees with new routines. I am more like Joey. And I strive to be more like Danny. He is my little hero.
My hats were once so important to me. Now they are scattered all over the floor of my bedroom closet. Once my daily camouflage for what cancer had done to me, my hats are now toys. Joey and Danny play with them and toss them around and wear them — sometimes one at a time and sometimes they pile as many as they can on top of their little blond heads. The hats hold no real significance to them — they are just playthings and while Joey can recall that I wore them at one time, the emotion wrapped up in the pale blue sleep cap and the black Nike ballcap and the yellow bucket hat is lost on him. I consider this a blessing — that one day, he and Danny will likely have very little memory of this cancer adventure and that they may only remember what fun it was to wear so many hats.
I’m fading. It must be the Herceptin. Because for the months of June and July — my only treatment-free months so far — I felt so strong. That’s when I began my over-the-top exercising and felt more alive than ever before. But now I am so tired that I cannot exercise. On Tuesday, I tried to walk on my treadmill and stopped after one mile. I could not continue. My body was heavy and weak and fatigued. Yesterday I tried to walk outside in my neighborhood and after just a short time, I felt like I could hardly lift my legs. So I returned home — defeated.
I thought I was coming back to life. In many ways, I am. My blood looks good. I had it checked again today and my counts are all in a perfectly normal range. My hair continues to grow —
I plan to take it easy. I will get plenty of sleep. I will take some time off from exercise. I will accept help. And I will give myself permission to be feel weak and tired. I have no other choice.
Strange things are happening to me. For one, some of my bottom eyelashes are breaking and some are falling out. So I have a mixture of long eyelashes, short eyelashes and missing ones too. And one of my big toenails has cracked in half and I have no memory of an injury that would have caused such a deep tear. Right now it’s hanging on and I keep painting it with red polish to seal it in place until it grows out.
Both of these are side effects of chemotherapy, but not the chemo I’m currently receiving. They are symptoms of my first chemo, the harsh, toxic, deadly one that ended on March 4th. Why these things are happening to me now is not clear.
I also have dry eyes, so dry that at times I can hardly blink. I feel like my contact lenses are going to ball up and fall out. This is strange because one side effect of my current Herceptin therapy is watery eyes. I’d actually like a little of that side effect right now.
The joy of having my menstrual cycle return and the knowledge that I will not enter early menopause is tempered by the hassle of unpredictable cycles and periods that come and go over the span of two weeks.
And my left armpit, the one with four missing lymph nodes, is getting tight and sore. My physical therapist could tell from massaging this area that the muscles feel like ropes. She said sometimes this happens six months to one year after surgery. Despite my exercises to increase my range of motion, this still happens. She wants me to come back weekly for massage, a perk in the whole scheme of things.
Recovery takes time. There are peaks and valleys, waves of good and bad. I read a quote in a magazine the other day that sums it all up:
“We can’t control the waves, but we can learn to surf.”
I sat in the big infusion room today while Herceptin dripped through my veins. No private room this time which is fine with me. In the pink lounge chair, lined up next to other patients, I get to see the action. I watch the nurses buzzing around — accessing ports and sticking veins, fetching bags of liquid drugs from the pharmacy, starting infusions, stopping infusions, talking with patients, and basically managing the business of chemotherapy. I listen to music the nurses must choose throughout the day — last time it was Frank Sinatra; today it was some other slow medley of old tunes. I watch patients walk to the restrooms while steering their IV poles around the crowded room. I notice people sleeping during their treatment and others talking with caregivers. And I hear snippets of conversation. Today I heard one young woman talking with her nurse about a drug she mixes and drinks following chemo. She said it tastes awful and was wondering if she could receive the drug through her IV before she departed. The nurse said it could be done — and she did it. The drug, Mesna, was one I’d never heard of before so I assume she does not have my same cancer. I also overheard a social worker talking with a patient receiving her first dose of Adriamycin and Cytoxan — standard for breast cancer and the same drugs I had earlier this year. This woman must have the my same cancer. The social worker prepared this older woman for what lies ahead — hair loss and side effects such as nausea. She was given a run-down of anti-nausea drugs and was told when and how to take them. She took it all it in while reclining in her pink chair, toxic drugs entering her bloodstream.
In my own pink chair — chair #2 — I felt for this woman. I felt apprehension and fear and the unknowns of the road ahead. Will this woman tolerate these harsh drugs? Will her body remain strong or will it break down? Will she cruise though therapy like some do or will her body weaken to the point of hospitalization? Will she show off her bald head or will she cover it with wigs and hats and wraps? It’s a mystery that unfolds over time. It’s scary and it’s empowering.
My own mystery with Herceptin is just beginning. I tolerated my first dose well and felt only a bit of nausea following my treatment and the morning after. I’ve been tired here and there and my eyes are dry but these symptoms could be from anything — staying at home with two kids, my exercise routine, allergies. In all, it’s been smooth sailing. And I hope to survive today’s treatment as easily as the first. And in three weeks I will report back to the infusion room where I will take in the sights and sounds once again.
My grandma’s 89th birthday was yesterday — August 11. I didn’t get to celebrate with her, though, because she died two years ago, just before her 87th birthday. It’s lonely without her. I miss her spunky way of being, her spirit, her sense of humor. I miss her family stories, her love of roses and gardening, her cooking. I really miss her strength. She survived a lot in her life yet was always at peace. She was a religious woman and had a faith that could move mountains.
Joey tells me that even though we can’t see her, Gram is still with us. He thinks that people who pass on go to heaven and the clouds become their eyes. So perhaps Gram is watching down on me through the clouds, aware of my happiness and sadness and triumphs and pain. Maybe she knows of my battle with breast cancer and although I wish she was right here with me, I will borrow from her strength and imagine what she would be telling me right now — that God only gives us what we can handle and that I will be fine in the end.
Happy Birthday, Gram.
I have been feeling tired for the past few days, so tired I can hardly hold my eyes open once afternoon rolls around. Worried that my blood counts may be off again, I went today to have a CBC (complete blood count). It was normal, even more normal than it was last time I was checked. My white blood count is 6.8 or 6,800 with the normal range falling between 4.0 (4,000) and 10.0 (10,000). So I am well. I told the nurse there must be some other reason for my extreme fatigue. She guessed that maybe I am pushing myself too hard. Maybe she’s right. Maybe it’s the double, sometimes triple workouts I’ve been doing each day. It’s not that I’m obsessed. I just have been feeling so strong lately that my usual workouts (walking 2.5 miles per day) seem like warm-ups. So I keep going. Or I walk again later in the day. And then I walk again on some days. I consider this my comeback, a return from illness and weakness. I’m alive. And I’m celebrating. But now maybe my body is telling me to slow down, to halt the celebration a bit. Or maybe it’s something entirely different that is making me so tired. Maybe it’s Joey.
Joey is the love of my life. And he is the one person who challenges me and tests me and zaps my mental reserves. He has always been a “spirited” child, a child with more of everything, more energy, more enthusiasm, more defiance, more tantrums, more outbursts, more whining (and more love and sweetness and kindness too). John and I have spent 4 years trying to determine how to best channel Joey’s energy, redirect his inappropriate behavior, and praise what he does well. We seem to always fall short. We’ve relied mostly on time-out and removal of privileges. Both work for short periods of time but there’s no long-term learning. So we’re trying something new. I am a bit uncertain about this approach but it’s apparently researched and seems to works with kids with severe to mild behavioral issues. My therapist armed me with packets of information on this technique. The basic philosophy is that behavior that is rewarded will be repeated and behavior that is ignored will eventually fade away. So when Joey shares with Danny or listens to what we say, we will reward him verbally and perhaps with a small token or favorite activity. When he whines and kicks and screams, we will not respond. We won’t make eye contact and we will focus our attention on something entirely different. We won’t ignore harmful or destructive behavior, but his annoying, bothersome behaviors will not receive attention. Research shows that we will see an increase in this poor behavior at first and then will see it decrease. Sounds simple enough. It always seems easy on paper. Then the moment arrives, we choke, and we fall back into our old routines.
Tonight we were out to dinner and Joey asked for candy once he had finished eating. Since he just had two cavities filled today, we said “no.” We should have told Joey “no” and then not said anything more. Move on. Talk about something else. I had already read about how to do this. But Joey kept asking and we kept saying “no.” We kept justifying our answer and telling him why he could not have candy. He persisted and we responded. We paid too much attention to his negative behavior. We need to do better. We need more practice.
Maybe tomorrow will be better. When I’m not so tired.