Sunday, December 27, 2009

Hair Follicles and Eye Lashes

"Do you feel like watching a tear jerker?" I asked my mother. She had dodged the patches of ice and crossed the driveway from her apartment over the garage and sat in our living room.

"Sure. I guess so," she said.

I pointed the remote at the TV and selected My Sister's Keeper on the On-Demand menu. "I've heard it's a really sad movie. You sure you're up for it?" She reassured me she'd be fine. I put a box of Kleenex in the middle of the coffee table.

Friends told me to avoid the movie; they thought it would be hard for me to watch. It really wasn't. Yes, I got teary-eyed and even wanted to sob out loud at one point, but managed to keep it together in front of my husband and mother. The story line about Anna's refusal to donate a kidney, one more medical procedure among many for which she had been genetically engineered from birth as a donor for her sister, Kate, fighting leukemia, seemed a little far fetched and I figured out the twist early on. However, the depiction of leukemia rang authentic given my experience walking alongside my niece fighting leukemia.

It is always interesting to see how Hollywood handles the hair loss of chemotherapy. They always look like shaved heads, not shiny bald from hair follicles dying. And one thing that can never be accurately depicted is the loss of eyelashes. Both Kate and her love interest, who also had leukemia, had lovely, dark eye lashes. My eyelash-free eyelids make my eyes look small and encased in bare flesh. I haven't figured out a way to make them up short of using fake eyelashes. I could have bought some at the wig shop and told the nice sales lady that maybe I'd be back after I lost my eyebrows and eyelashes. I haven't gone back. I've gotten used to the plain-Jane look. A little blush and I'm good to go!

Hollywood has its limits and I guess only those of us who've had the real experiences will pick up on them. Mom mentioned mid way through the movie that it sure was a tear jerker, but I was the only one blowing my nose and dabbing my naked eyes!

Wednesday, December 23, 2009

"Private Caller"

A few nights ago the phone rang. I held it in my hand and read the Caller ID. "Private Caller," it said. "Hmmm, should I answer?" I said to myself. I don't see "Private Caller" often and it's usually not someone selling something. I answered.

"Donna! How are ya?" I tried to place the male voice who made it sound like he was an old friend.

"I'm fi-ine," I stammered. "Who's this?"

"I'm calling on behalf of the Professional Firefighters..."

I immediately interrupted, "I'm sorry, but this isn't a good time," and hung up. I'll admit to feeling a little guilty being abrupt, but geez, he was disingenuous as he wanted me to believe he was someone I knew and that bothered me a lot.

So last night when the phone rang and the Caller ID again said, "Private Caller," I decided not to answer. An hour later, I noticed the "Private Caller" had left a message, so I turned on the speaker and Buck and I listened together. It was my surgeon calling with the results of the pathology tests. She said the sentinel node was completely fine, that the treatment protocol obviously worked. She said I would need another mammogram in January, but otherwise, no more surgery would be required.

"Oh, I'm so bummed I didn't pick up," I said to Buck. "I really wanted to talk with her since I didn't get to see her after my surgery."

The news was wonderful to hear though and I said outloud, "Thank you, God! Thank you!"

Sunday, December 20, 2009

I'm Getting Off Easy

My husband helped remove my bandages this morning. Fresh wounds creep me out and I really didn't want to look but I knew I had to. It wasn't so bad after all! I feel very fortunate that I didn't have to have a mastectomy. I've had people say, "If it were me, I'd tell 'em to take it off." Someone said it to me again today over lunch with friends. I know they mean well but I'm not sure they really know what they are saying. I've met some women through my blog and also at my church who have had mastectomies and the picture ain't pretty. The process of reconstructive surgery is long and painful and to all my breast-cancer sisters who have faced that, I say I'm so proud of your courage. I'm getting off least so far so good.

Having lunch today to celebrate a good friend's birthday was so much fun. I feel a little funny going with no eye makeup, but I have no eyelashes for mascara. I brush on some blush and that's the extent of my makeup these days. The other day I lamented to my husband that I hate not being able to wear makeup. He said, "You don't need it. You look beautiful without it. I've always thought that!" Ahhh, he really knows what to say, doesn't he?

There was no way I could face my wig today but felt comfortable wearing my turban among friends. (My hair is growing back fast though.) As we sat in the restaurant's second floor dining room with a panoramic view of the Atlantic Ocean in front of us, we watched the high surf the blustery nor'easter left in its wake, and there were moments when I felt like my old self; when I forgot about the discomfort of the surgery.

Friday, December 18, 2009

Surgery Has Come and Gone

"Let's leave early," I had said yesterday morning as we got ready to go to Mass General for my surgery. "The last thing I need is to be nervous about being late on top of surgery anxiety!"

My husband agreed and we gave ourselves a full two hours. However, there was heavy traffic going into Boston. I was nervous we'd be late. So we turned on our Garmin GPS, punched in the address and checked our arrival time. It said 8:42, twenty minutes ahead of our 9:00 am check-in time. I gave a sigh of relief! We eventually lost the extra time in the traffic, however, we pulled into the Parkman Street parking garage at 8:55 and I arrived at the Wang 3 day-surgery check-in station right at 9:00.

After stripping down and donning hospital garb, I was wheeled to the breast imaging center for more mammograms. This time my right breast was squished as two doctors hovered over it and placed wire markers so my surgeon would know the exact placement. First, they squeezed from the top down and then sideways. That experience ranks pretty high on my list of most painful procedures I've had. Not so much the actual mammogram but the invasive nature of placing the wires. That phase was all done by 11:00, I was on my way back to the day surgery floor and wheeled into a spot with an empty bed. "You go ahead and crawl onto the bed. I'll get some warm blankets and let your husband know he can join you," the nurse said.

That's when the interminable wait began. I had asked a couple of technicians along the way if they could tell me when my surgery was. No one could answer me. Bear in mind I'd had nothing to eat or drink since midnight (10:30 to be exact) and the discomfort levels began to rise. At 12:30, I asked a nurse to find out when my surgery was scheduled. She came back and said 2:00. However, I didn't actually get into the operating room until around 3:00. Those were the longest four hours, laying there, on my back with an IV in my left hand and wires protruding from breast, though folded flat against my breast and covered. My flannel mouth was really getting to me. Luckily, I was able to sleep through a good share of the wait time.

At 3:00, they showed up, wheeled me through double doors into a long, brightly lit hallway with operating rooms on both sides. Stretchers lined the walls, some carrying patients, some empty. Supply cabinets everywhere. More chaotic that I would have imagined. I said to the attendant, "So this is what the bowels of the hospital look like!" Before I knew it, I was waking up, feeling good, had some graham crackers and cranberry juice. By 6:00 I sat in the wheelchair and someone pushed me down to meet John who had pulled up to the front entrance. I slept most of the way home until John drove into our driveway at 8:15.

So far, nearly 24 hours later, I have very little discomfort. I slept good last night and am resting today but able to do some hand quilting. The perfect activity for a cold, wintry day where the thermometer hasn't reached above the twenty-degree mark.

It's done! The surgery is behind me, it will heal soon. The surgeon said the sentinel node she removed looked good but we will have to wait another week and a half to know the results of the pathology tests. I'm not worried. What will be, will be.

Wednesday, December 16, 2009

My Mass General Hosptial Initiation

Oh my goodness is Massachusetts General Hospital huge!!!! That's where my surgeon who sees patients at the Dana Farber does surgery. What a different experience Mass General is compared to the past four months of visits to the Dana Farber Cancer Institute. Maybe it's because I'm used to the Dana Farber facility and the familiar, friendly faces, but I prefer the Dana Farber. It has nothing to do with the quality of care because I felt confident yesterday as I endured a bunch of mammogram views on both breasts--two on the left, three on the right initially. But then was called back not once, but twice for two additional views each time on the right. Ouch! Even though I hated it, I was reassured that the goal was to get the best possible films for my surgeon to do her job tomorrow. I think Mass General doesn't have the personal touch that the 9th Floor Breast Cancer Clinic at the Dana Farber has. It's understandable considering they are very different facilities, so I don't hold it against Mass General.

After the hour and half visit to the radiology department, John and I found our way to the pre-admission testing department where I gave up four more vials of blood and had another EKG. For someone who is terribly modest and couldn't bring myself to openly shower and change in the girls' locker room in high school, I'm forced to let it all go as best I can. Eeewe, I hate it with a passion though!

After all the tests, we settled in for what extended to an hour-long wait to see the anesthesiologist. In the end, we met with an RN who took my medical history and then a nurse practitioner who assists the anesthesiologists. Even though I feel a certain fear of the unknown about tomorrow's surgery, I think I'm a pragmatist at heart and approach tomorrow knowing it has to be done and I'll get through it. The unknowns are inevitable. Will they have to remove several lymph nodes requiring two incisions and a drain insuring an overnight stay? How quickly will I recover from being under general anesthesia? In the end, it is what it is and I will cope and it will all soon be a memory.

Sunday, December 13, 2009

Nostalgia & Christmas Joy

Are there words adequate enough to describe the delight I have in my grandchildren? I doubt it.

Ava spent Thursday night with us (she'll be three in January). She slept in the room that was her bedroom from age 3 months to 18 months when my daughter and her husband moved back to New Hampshire from Los Angeles. Lately she and I haven't spent much time together because of my low energy levels. But I'm finally feeling like my old self. When my daughter told her she was spending the night, she said, "Is LeeLee feeling better?"

Ava helped me decorate our Christmas tree Friday morning. I admire people who have themed and coordinated Christmas decorations. They are very beautiful. It's just not my thing. I have every ornament ever given to me since I got married in 1971 and they come out every Christmas to adorn our Christmas tree! The first one Ava pulled out was a 26-year old paper plate with a faded green and red crepe paper wreath surrounding a picture of my son when he was six years old. He made it at school when he was in first grade. He's 32 now. Ava exclaimed, "That's Uncle Brian!" She's seen his childhood pictures on our dining room wall. She laughed, carefully opened its original red yarn loop and hooked it over a low branch. She stood back, smiled and clapped her hands, then turned back to the box and continued to inspect each ornament before hanging it and stopping to clap each time.

"Wow, look at this one, LeeLee," she said, "it's beautiful!" She held up a small, gold satin ball decorated with different sized white beads. Very ornate.

"My sister made that for me a long, long time ago," I said. I thought of my late-sister, Jo-Ann, and her various forays into artsy-craftsy things--macrame plant hangers, developing her own pictures, ornate Christmas ornaments, etc. These creations are dispersed throughout our family. My mom still uses some of those plant hangers. My photo albums have black & white pictures she took of her children and mine and developed in her dark room. And yesterday, that Christmas ornament resurfaced.

Ava continued carefully taking each ornament out of the box and, with a studied gaze, took in every detail. We had constant conversation as we took our time. I'll admit the placement is a little bottom heavy, but for me it's not about the asthetic, it's about the nostalgia; it's about creating memories for a new generation. In the process, the joy of Ava's and my time together was evident to both of us. I took great joy in seeing her inspect the deocrations and hang them on the tree and I have no doubt Ava knew I was delighting in our time together.

Ahhh, the joy of grandchildren!
PS. The face shot of Ava was taken last week when Ava helped my Mom, her great-grandmother, set up her Christmas village.

Thursday, December 10, 2009

Shopping & the Elephant

It's really something in my world when I get excited about going grocery shopping. Normally, I avoid the grocery store as much as possible. But I looked forward to going this afternoon--all by myself. My biggest dilemma was how to keep my head warm going out in the cold. Winter weather arrived in New Hampshire with a vengeance yesterday and dropped 10 inches of snow where we live. Wind chills registered around 24 degrees this afternoon. I honestly don't know how men who shave their heads handle the cold. I contemplated wearing my wig for warmth, but the wind really messes it up and you can't just run your fingers through it and smooth it out. I opted for a head covering that ties in back with a furry, bell-shaped black hat over it. It actually looks pretty stylish, even if I do say so myself.

As I pushed the grocery cart around the store, I felt self-conscious. Like people who looked at me instantly knew I am a cancer patient. It's not necessarily a bad thing, I guess. Before I got cancer and saw people in the midst of chemotherapy, I didn't know what to say to them either and pretty much tried to ignore the obvious. I don't think I'll do that from now on. I'll probably ask them how they are doing and what they are being treated for. Like the woman in the waiting room when I took my Mom to the doctor a few weeks ago. I had a cancer hat on and she came right out and said, "How far along are you in your treatment?" We had a long conversation and it turned out she was a breast cancer survivor.

I had to take my broken Treo phone to the Verizon store last Friday. Again, I didn't have my wig on, just a cancer hat. A crackerjack salesman waited on me and talked me into replacing my outdated Treo with the brand new Droid, Motorala's answer to the iPhone. (I absolutely love it, by the way!) Right away I noticed a large scar on his scalp. He told me the whole story about falling down a flight of stairs when a door knob let go as he yanked the door shut. At one point, I told him I had been getting chemotherapy and he said, "Oh wow! I hope things are going well for you." I could tell he was a little uncomfortable with me, yet very sympathetic. It's gotta be hard for people who deal with the public and come face-to-face with people obviously dealing with heavy things. Like, what do you say? I'm leaning toward acknowledging the proverbial elephant in the room rather than ignoring the obvious.

Tuesday I took my niece, Mary, out for a couple of errands. She has survived a stem cell transplant for leukemia, is battling graft-vs.-host disease, and recently barely survived a bout with H1N1--3 weeks in the hospital, half of which was in ICU. She went home a little early (she simply had to have Thanksgiving with her husband and 3 teenagers) and is gaining her strength back, but requires a walker and wheelchair. I can't even imagine what the people in the post office and the town clerk's office thought when they saw us waltz in, me in my chemo hat pushing Mary in the wheel chair with her blue sterile gloves and "duck bill" face mask! Everyone was very nice, sympathetic and respectful. Strangers held doors open and offered a helping hand when I couldn't maneuver the wheel chair over thresholds.

I wouldn't have been offended if someone was curious about my obvious battle with cancer. Not at all. I am learning that I don't have to hold back and ignore what's in front of me when I encounter someone like me. I wonder if I speak for others in my situation? I wonder if someone with no legs in a wheelchair would be offended if I asked them how they ended up there? I'm not sure. But you MAY ask me if you see me out there somewhere.

Wednesday, December 9, 2009

Hours Days Months Years

I am amazed that my last entry was late October! Where has the time gone? And how is it that my ninth and final chemotherapy treatment was three weeks ago already? I suppose it's a good thing. If you had asked me during the long days of mid-September or early October if the treatments were going by quickly, I would have said, "Are you kidding?" It felt like time stood still as I spent countless hours on the couch unable to focus on anything. Hour after hour I listened to soothing music on my iPod and stared at the living room ceiling, or looked at the treetops sway in the breeze outside the window behind the couch. Those were the days when the loneliness of cancer crept up on me like the water that leaked into our basement on our 35th wedding anniversary. We didn't see it coming but the impact left us in despair as we scrambled to cope.

Actually, in retrospect I suspect I was lonely by choice. I think I preferred being alone over entertaining even my closest friends or relatives on my worst days. Not sure why. Perhaps I chose to suffer in solitude to protect them from the heartache of watching someone they love suffer.

But I've made it through the darkest days. I survived chemotherapy--the most frightening aspect of receiving a cancer diagnosis for me personally. I watched my sister suffer through chemotherapy when she got lung cancer in the early 1990s. I watched her daughter, my niece, endure unspeakable suffering during her induction phase of chemotherapy after her leukemia diagnosis in 2006. I honestly thought I would never be faced with the prospect of those toxic drugs pumping into my veins! But it happened and now I'm on the other side. Unbelievable!

In a mere eight days, I will drive to Boston very early in the morning (on December 17th) and be admitted to Mass General for a lumpectomy. Yup, the Avastin (clinical trial drug) coupled with the adriamyacin, cytoxin and taxol has successfully shrunk the tumor and, thankfully, made it possible for me to have a simple lumpectomy instead of a mastectomy. In all likelihood, I will go to sleep in my own bed that night. I've never had surgery before nor been under general anesthesia but I keep in mind that millions of people have surgery every day and I'll be just fine.

On Christmas Eve our children, their spouses, and our grandchildren will gather around our Christmas tree and create a new year of Christmas memories. After the first of the year, I begin my rounds of radiation. When we celebrate my third grandchild's (Anna Mae's) first birthday on July 14, 2010, and perhaps have welcomed our fourth grandchild, I will have passed the one year mark since my diagnosis. And if time keeps ticking as quickly as the past four months have passed by, before long I will be two, three, four, even five years out from my July 1, 2009 diagnosis. Breast cancer will be a memory but, from what I hear from other survivors, the thought that it can come back pops up nearly every single day.

Tuesday, October 27, 2009

Life is a Patchwork Quilt

Tomorrow John and I will get up at 4:45 and be on I-95 South heading toward Boston by 5:30 for my 7:00 AM appointment--treatment #8 out of 9. I know I'm facing five to seven days sapped of energy and feeling just plain lousy, but I also know those will be followed by seven days of feeling pretty much like my old self.

So today, I distracted myself and spent a few hours in my quilt room strip piecing a new quilt top I'm making for someone special. During breaks, I checked my email and logged onto Facebook a couple of times. An old friend I hadn't heard from in twenty years accepted my "Friend Request." On a whim, I had searched for him and there he was, staring back at me in his profile photo; twenty years older but the same warm smile and friendly eyes. Another friend I haven't seen in eleven years posted a reminder that today was the anniversary of her husband's death. I remember it well.

When I returned to the sewing machine and the rather mindless task of strip piecing, my thoughts carried me back twenty years and the memories of our old friend who is now a new "Friend" on Facebook. I thought about the circumstances that brought our families together. The laughter and fun our families shared together. I thought about the sorrowful circumstances that separated us too. Names and faces of people I haven't thought of in years came to mind.

As my sewing machine whirred on and stitched together the colorful pieces, images of our life eleven years ago filled my mind. Again, I thought about the friend on Facebook who reminded us today is the anniversary of her husband's death. I hadn't thought about the circumstances that caused our lives to intersect in a long time. Memories of fun get togethers and difficult hospital visits surfaced; the funeral of a father who died too young and left two young girls with no daddy.

Hmmmm, it seems life is a patchwork quilt--patches of happy, joyful times as well as patches of sorrows and regrets.

Wednesday, October 21, 2009

Pacing Myself

You can't tell from this picture I took a few minutes ago, but today there is a gentle breeze that makes the treetops full of dry, yellow and orange leaves say, "Shhhh." I know because I sauntered up and back on this road just before lunch. I've been daydreaming about feeling well enough to go out for walks so it felt like a dream come true.
Saunter, stroll, however you want to think of it, the pace was very slow. And there were moments that felt sacred. Like when I stopped to take in the myriad scents all around me, the most pronounced being the thick piles of wet leaves and pine needles. Ahhhh, it smelled so good! I also had to stop, close my eyes, and let the warm sun shower me in its brilliant light and breathe in deep breaths.
At the top of a rather long incline, I stopped for a moment's rest and noticed a small snake in the middle of the road. At first I thought it was roadkill until I got right on top of it and its head was lifted up. I took a wide berth around it and caught sight of a blue jay criss crossing the road in front of me, like a self-designated spy checking me out. It seems that slowing down has its benefits. I heard the hollow rat-a-tat-tat of a woodpecker echo through a stand of leafless trees. Unseen squirrels chirped off and on and I imagined them storing acorns for the cold weather that's just around the corner. The inevitable caw-caw of a crow punctured the serenity but I didn't mind. I even heard the gentle snorts of Ava's favorite horses off in the distance.
For that short half hour, I accomplished a few things. First, I actually took a walk! Second, I sucked in as much fresh air as I possibly could, while I could! Third, I discovered a new sense of hope that one day my life will no longer be focused on this interruption called breast cancer. Nope. One day, I will resume my brisk, two-mile walks on our dirt road and return to Curves to rebuild the strength in my muscles and bones. One day, I will feel healthy again. I know it. I look forward to it. I can get through these next few months. I can! I will! And just like I had to pace myself to go for this half-hour stroll, I will pace myself as I navigate the second half of my breast cancer journey.

Tuesday, October 13, 2009

Que Sera Sera

Before my diagnosis on July 1st, my life was ordered and predictable, just the way I like life to be. I worked three days a week and at least once a week, my grandaughter Ava would come spend the day with me or, more often than not, spend the night. We played her favorite music and danced around the kitchen. She climbed into the jogging stroller and we walked up our dirt road to see the chickens and horsies and picked daisies and black-eyed susans along the way. We ate breakfast in the living room. And before naptime and bedtime we read a couple of books of her choice and sang a song or two. She always requested "Que Sera Sera."

Now that I have few days that I feel close to normal, the days are few and far between for visits from Ava. Both of us miss the days before my diagnosis. In the days following my first treatments, Ava would ask, "Can I stay at your house, NeeLee?" I would have to tell her it wasn't a good time and as time has gone on, she doesn't ask anymore. When I do have a few good days, and one of them includes a day when my husband is home, Ava does come spend the night. Such precious times they are too.

Last night was one of them. She and I watched Charlotte's Web while Papa made dinner. She refused the booster seat and chose to sit in the dining room chair like a big girl (she'll be three in January). She gobbled up raspberry shortcake for dessert and there was just enough time for one episode of her favorite TV show, Calliou, before bedtime.

Ava gave Papa kisses and hugs. Papa said, "Sleep tight!" as Ava climbed the stairs. She called out, "Don't let the bed bugs bite!" and we all laughed. She and I settled into the rocking chair and after I read her two books, I said, "What song would you like to sing?" As usual, she said, "Que Sera Sera." She faced me and snuggled against my body, her head on my chest and I started the song: "When I was just a little girl, I asked my mother, what will I be? Will I be pretty? Will I be rich? Here's what she said to me. Que Sera Sera, whatever will be, will be. The future's not ours to see. Que Sera, Sera." Ava sang with me last night. She doesn't always sing it. I love it when she does. We sang it again, two more times, same verse.

I'm not sure whether Ava is drawn to the tune or the words. I suppose a little girl asking her mother questions might be part of it and the tune is certainly appealing. I've loved that song since I was a little girl actually. I remember hearing Doris Day singing it on the car radio. Last night the words of the chorus felt particularly poignant for me. "Whatever will be, will be. The future's not ours to see." I have three treatments left. A four-week wait, then surgery. It's still uncertain whether I'll have a lumpectomy or a mastectomy. It's still uncertain whether there'll be a recurrence in my future. What will be, will be.

Thursday, October 1, 2009

From the Inside Out

My eight-hour long visit to the Dana Farber yesterday began in the basement level of the building where Nuclear Medicine is housed and where I reported for my second heart MUGA test to look at the function of my heart. First they removed a small vial of blood, made me wait 15 minutes while they injected it with a radioactive substance, and then reinjected it back into me. The MUGA machine is similar to an MRI but not so claustrophobic and it is noiseless. It requires being flat on your back for 45 minutes so I planned well and set my I-Pod to play my favorites list in random order. About 20 minutes into the test, a familiar contemporary Christian song titled "From the Inside Out" began to play. As the refrain crescendoed, the words jumped out at me and took on new meaning.

My heart and my soul

I give you control

Consume me from the inside out Lord

Let justice and faith

Become my embrace

To love you from the inside out

Everlasting, your light will shine

When all else fails

Never-ending, your glory goes

Beyond all faith

And the cry of my heart

Is to bring you grace

From the inside out Lord

My soul cries out

From the inside out Lord

My soul cries out to you

The MUGA machine was peering inside my body, looking at my heart beating. It occurred to me that God sees me inside out, God sees my heart beating and my tumor shrinking. The song plunged me into a heartfelt prayer like never before--a prayer to embrace the rest of this journey with a renewed sense of God's everlasting light and never-ending glory.

I've been on the lookout for God's provision since the early days after my diagnosis and have no doubt hearing this song from my random favorites list was not coincidence. I call it a God-incident and I am deeply grateful for the experience.

Wednesday, September 23, 2009

Still By My Side

Can I just say that I am a very lucky woman?

I am.

In January of 1969 at the tender age of 16 , I met my life's partner and forty years later, he's still right here by my side. Yesterday, as I spent post-treatment day six on the couch, he texted me several times. "How are you doing today?" I confessed that early in the morning I had started laundry and vacuumed cat hair off the couch, and now I was pretty much confined to the couch. He texted me, "Quit it! You push it, you pay!" We discussed plans for dinner, he texted back, "I'll cook. You relax."

And he did. He came home after a long day at work, cooked dinner, brought it to me on a tray, made me a cocktail of half a glass of fruit punch flavored Gatorade and half water with three ice cubes, cleaned up the kitchen and helped me fold the pile of laundry on the bed before we sat down to watch Dancing With the Stars on TiVo. (I really don't want to be hooked on that show this season! Please!!!)

That was just last night.

He takes care of the cat litter boxes, makes sure we get the trash out on Tuesday mornings, constantly keeps the kitchen picked up, takes my Mom grocery shopping, makes most of the meals these days, vacuums and, of course, waits on me. That's all when he's home. He leaves the house by 7:00 each morning and returns usually around 6:00 pm. Once in a while I can tell he's feeling overwhelmed because I know him so well, but he doesn't complain. He is still by my side, still doting on me, still loving me, still my rock.

Thursday, September 17, 2009

What's In the Silence?

I'm amazed it's been a whole week since I've felt inspired to express myself here. A number of years ago during one of my many stops to browse in Barnes & Noble, I happened on a book about harvesting journals. It has some great ideas of how to revisit old journals and find new writing projects among them. Considering I have journaled for the majority of my adult life beginning with the birth of our first child, someone someday will either be very intriqued by them as I was with my great grandmother's diaries and my grandmothers' journals, or they might make a nice bonfire!

One take-away thought from the book that stuck with me is the idea to explore areas of silence in my journals--what is not recorded and why. For instance, my progeny will find next to nothing about my marriage except what a devoted husband I have who has worked hard and supported his family without fail. My journals are full of my own musings about walking with God, learning about my own areas of growth in my life, and lots of gratitude for God's amazing provision for all aspects of my life.

So this morning after my seven days of silence on this blog, I wonder why? What have I left out? The fact is these were some of the most difficult seven days yet since I began treatment. Stuck inside this house for days on end, staring at the same walls, struggling to eat and drink, I mostly lounged on the couch in between times to nurse a bleeding hemorrhoid and make sure I was taking the right balance of laxatives and stool softeners. I had no energy for nor interest in the computer or checking email. I watched back-to-back episodes of The Peoples Court during the mid-to-late morning timeslots, only to find nothing at all I wanted to watch. So with a click on the remote, silence filled the room. No energy to get up, I continued to lay there and stare off in space, feel my frustration, wipe tears so I could check the clock and hope time was passing quickly so this day would be over and I'd be one day closer to feeling better. I spent many hours doing just that, sometimes I listened to my Ipod which blessed me by putting me to sleep.

Every night, I fall asleep as I ponder the words in The Lord's Prayer and then imagine myself as my little granddaughter, Anna Mae, snuggled up in her mother's bosom without a care in the world, her every need to sustain her life within her mother's power to provide. It's a maternal image of God that is very real to me and I know God is without gender and right now I need Mother God. I've known Father God for over 30 years and know His loving care and protection. I need Mother God's nurturing, comforting embrace right now. It sustains me. I love falling asleep in Her loving embrace.

Thursday, September 10, 2009

I'm Getting Antsy

Today is the eighth day straight confined to my home and I'm getting antsy. Although there is great improvement this morning, some of the physical side effects I've been experiencing have made it impossible for me to be too far away from home. All indications are that tomorrow will be a day to get in the car and spend a few hours at the office. I'm looking forward to it!

Treatment #4 has proven to be the most difficult yet. My clinical trial nurse told me yesterday that some cycles can be worse than others. Treatment #5 is my last one to receive the Adriamycin and Cytoxan along with the Avastin clinical trial drug. I've been told the A/C combination is the more difficult and better days are ahead as I have Treatments #6-9 of the Taxol and Avastin. It is my understanding the Taxol continues to sap energy and leaves one feeling achy all over, but it doesn't cause nausea so I won't have to have the strong nausea medications which have left me with all these unpleasant side effects related to cycles of constipation/diarrhea. That will be a welcome relief, but is a month away unfortunately.

So I brace myself once again. I anticipate feeling good, hopefully almost normal, for the next five days and then try to embrace the fact I'll have a little less than a week of suffering the A/C treatment effects and be that much closer to the end of this unexpected and more-difficult-than-I-ever-imagined bump in the road called breast cancer.

Monday, September 7, 2009

Wet Dishrag

I've concluded that I'm really not very good at being sick. The past few days have been really difficult. The same old complaints of being hungry but nothing sounding good, needing to drink but getting fluids down with great difficulty. My cousin Susie told me to expect to feel like a wet dishrag. That pretty much sums it up. Think about what a wet dishrag does and you get the picture of what my life has been like for the past four days. Just existing in a lump on the couch. Even the back porch on these warm, sunny afternoons doesn't beckon me right now. I just recline on the couch and mostly sleep.

The digestive tract issues prove to be the most challenging. Think Senekot, Colace and PreparationH and you get the picture! All issues one is clueless about when faced with this type of treatment.

Today is an improvement for sure. Hey, I'm on the computer again!

Thursday, September 3, 2009

7 out 10 Use Them

The signs have been numerous. Weeping in the shower at times. Sporadic periods of the blues. Actually telling Buck the other day, "If I need to, I'll get an antidepressant." And then a day later my conversation with my daughter in which she expressed her deep concern that I appeared very much down in the dumps to her. I did need an antidepressant a few years ago, a mild one that worked wonders without causing noticeable, long-lasting side effects. I took them for a couple of years and then I think the joy of family around me, and the unspeakable joy the birth of grandchildren bring, created the natural endorphins my brain had been lacking.

The heaviness in my heart drowns out that joy at times. It's obvious. In anticipation of facing my treatment, I went to bed Tuesday night fighting off tears. I recognize they are tears of fear, perhaps frustration is a better word, at feeling so lousy for so many days. As we sat in the examining room at the Dana Farber yesterday morning, I was surprised that the tears were back. The clinical trial nurse explored my history of depression and thought it made sense for me to take what helped me before. She told me on average 7 out of 10 women with breast cancer use mild antidepressants.

So we filled the prescription on our way back from Boston yesterday and I will begin today. It will be a week or more before they kick in, but if I can be more even emotionally, perhaps some of the things I miss will be interesting again, like reading, devotional time with God, prayer.

Monday, August 31, 2009

Salve for My Soul

It's a gorgeous, mostly sunny day in New England this last day of August. It's not hot, high 60s to low 70s is expected today. I sit here on our screen porch in quiet solitude; sounds of nature the only music--the green leaves rustling in the wind gusts and every once in a while a chickadee sounds off, "chick-a-dee-dee-dee-dee." My chemo-sensitive olfactory glands pick up the sweet scent of last night's cooler temperature's lingering effects. Somehow everything smells like bed sheets fresh from the clothesline.

This porch, this lovely country home setting we are so blessed to live in, it's salve for my soul. Even as a little girl growing up in the hills of Unity, New Hampshire, I've needed my quiet time amidst the living vegetation out of doors. Life that grows from small seeds, dirt, sun and water. There's something about it, perhaps just the reminder it is of our Creator. No human being can create a tree or a rock or a flower. Human beings can manipulate all those things, genetically alter them, etc., but we can't create them.

Day after tomorrow I will spend another day at the Dana Farber surrounded by white coats, stainless steel, needles, alcohol wipes, hand sanitizer and other hairless women wearing little caps or scarves. As I nestle into the infusion chair around 10:00, I will close my eyes and imagine this morning's scene, take a deep breath and know it's one day. It's one day closer to my final treatment.

Friday, August 28, 2009

Good Grief, the Stages

Her words had a sting to them. I heard her saying she was disappointed that I'm not dealing with this well. "I can tell by your body language that you're down, Mom."

"Caroline, I'm not feeling well today. I haven't felt well for seven days straight. I have no energy."

As the conversation continued, I realized she was coming from a place of love and concern and wanted to give me a pep talk; encourage her mother to get her mind into the fight. "That mind-body connection is so vital," she said. I couldn't argue. I know it. In fact, that morning I had made myself take some time for prayer and had come away with a renewed sense that giving in to discouragement would plunge me into a deeper battle that I didn't want to wage.

We talked about the stages of grief and how inevitable it is to experience them when given a life-threatening diagnosis. It occurred to me that I've been in and out of most of the stages even though it's hard for me to identify times of bargaining. Not sure I've been there. But certainly there's been plenty of denial, some anger, times of depression and times of acceptance.

We zeroed in on the hair loss. "Why are you so concerned about people seeing you without your wig, with just a scarf or whatever?" Caroline asked.

That was a great question and very difficult to pin down an answer. I've always wanted to just blend in, wearing a head covering shouts to the world, "I have cancer!" It begs attention and elicits sympathetic eyes trying to conceal sympathy. There's always vanity in the mix too. I want to look good and having no hair makes me feel very unattractive. Losing my hair has also made me face the denial I waffle in and out of. Every time I look in the mirror at my hairless head is one more stab of truth that, yes, I do have breast cancer. I do! Oh my God, I do!

Acceptance is within reach.

Wednesday, August 26, 2009

Warming the Pew

It really surprises me how much the daily battle with the physical distracts me from the spiritual. I wouldn't have guessed that would happen to me. It's not that the spiritual component of my life is missing, how could it be? I know I am always in God's presence that God's Spirit lives in me. It was a little over 32 years ago when I came to terms with Jesus, discovered the truth of his nature and identity, the Son of God who left heaven to live in human form, experience it fully, and give up his life as the ultimate and final sacrifice for the sins of mankind; he bridged the gap, made a way for human souls to spend eternity in heaven. As if that weren't enough, Jesus made provision for human life lived in this world; to live it abundantly as we open ourselves to become more and more like Jesus in our nature, most important of all to love as he loved.

After all these years, these truths are innate in me. So it surprises me when morning after morning turns into afternoon and I remember I didn't pray. It is nice knowing others are praying for me though. So many people leave messages in my CaringBridge guestbook that they are praying for me. Others email me and tell me of times and places that caused them to think of me and say a prayer. Today I realize that right now my faith is being upheld by others' faith. It's not the first time this has happened.

When my sister J0-Ann died in 1992 of lung cancer, I was in a daily battle with the spiritual. I was numb, going to church on cue yet really only occupying the pew. I was there in body, not in spirit. A friend approached me on one of those mornings, "How are you doing, Donna?"

"To be honest, not that great. I feel like I'm just warming the pew these days," I said.

"Well, if that's all you can do, then just do that!" he said.

I've never forgotten how freeing those words sounded to me that morning. It was okay to feel what I was feeling, experience what I was experiencing, and wait for better days. They came eventually. And better days are ahead of me now too. I'll continue to "warm the pew" and be present with God even though I personally don't have much to say to God right now. I continue to fall asleep at night with the image of my daughter holding baby Anna and see God as nurturing mother holding me close, comforting me, taking care of me in this time of great vulnerability and need. I'm a lot like Anna--I'm pretty much a helpless babe in God's maternal embrace.

Tuesday, August 25, 2009

Who Told Me To Shave My Head Anyway?

If I had it to do over again, I wouldn't shave my head so early. I believed my clinical trial nurse when she told me last Wednesday that my hair would be gone by the weekend. It appeared to be happening pretty fast when on Thursday morning in the shower, lots of hair had collected on the hair catcher. Later in the day, I had hair in my fingers every time I ran my fingers through my hair. Somewhere along the way, I had the impression that shaving it would make the process so much easier to bear. Now I'm not so sure.

It's Tuesday, nearly a week after my clinical trial nurse declared my hair would be gone by Sunday and I still have lots of hair. But it's rough stubble all over my head and my stretchy caps hurt like crazy to wear, just prickly, prickly as it squeezes against the grain. The hair is indeed falling out at a fast rate, but it's absolutely unbelievable how many strands are in a head of hair! I sat at my desk yesterday and discovered I could rub and rub, going with the grain of course, and it just fell out onto a piece of paper looking like two-day's worth of someone's beard as it accumulated. The "whiskers" fell down my neck and got stuck in my collar. Very uncomfortable.

I tried taking a second shower late in the day yesterday to see if I could finish the job, but no luck. I remembered a friend describing how her hair fell out over a period of several days and how it got harder and harder to blow dry and style (hers was all one length below her ears with bangs). Eventually, the day came when she could finish it, so she sat and pulled the rest of it out.

I can't change the fact that I shaved my head a little too early. I have to live with my decision and it will eventually all be gone. In the meantime, I've added just a little bit to my suffering. And I know what I'll advise someone else facing chemotherapy-induced baldness: don't shave it prematurely!

Monday, August 24, 2009

Not Seeing Eye to Eye

"It is so hot with this cap on," I said to my daughter, Caroline. Summer decided to arrive in New Hampshire last week and yesterday was particularly hot and humid. At my request, Caroline brought Ava and Anna out for a visit.

"So take it off. Why do you feel you have to wear it?" said Caroline.

"I don't want to freak out Ava."

"Mom, you're projecting that onto her. It's just a new haircut to her," she said.

I took off the cap. Ah, relief! After a while, Ava came in from playing outside with Papa as he grilled the burgers for dinner. I was alone in the living room when she saw me without the cap. Her mouth stiffened a bit and the corners turned down as she stared at my hairless head. It all happened so quickly. I knew without a doubt she was a bit repulsed at the sight.

"I have medicine for my booboo and it makes my hair fall out, so Uncle Brian helped me and," I began.

Before I could finish, Caroline appeared and interrupted, "LeeLee got a new haircut. Don't you like it?"

Ava didn't respond verbally, but turned away and wouldn't look at me. We got busy putting plates and sliverware on the dining room table, Buck came in with the burgers, and we all sat down at the table except Ava. She stood by the open window and kept announcing that it was raining outside.

"Com'on Ava, here's your seat. It's time for dinner," said Caroline.

Ava stole a glance at me and turned back to look out the window and said again that it was raining outside. In that momentary glance, I knew she wasn't comfortable sitting across from me with my head uncovered. I quietly got up, put my navy blue cap back on and sat down at the table. Ava then joined us and had no problem at all looking at me or eating her dinner.

Our adult dinner conversation included the topic of my treatments, the effects so far, and what I might expect as time goes on. It became very clear to me that my daughter and I do not see eye to eye in terms of how to help Ava understand my serious illness on her level. Ava listens to the adults in her world as they discuss LeeLee and what has happened. She knows something is up. It feels less than honest to tell Ava that I got a new haircut. Well, let's face it, it's not true. I'm more comfortable telling Ava that LeeLee has a booboo and needs medicine that makes her sick sometimes and makes her hair fall out, but it will all grow back and I will get better and she will be able to come and spend the night again soon. So far, I haven't had a chance to explain that to her. So far, her mother doesn't see it the same way I do.

Saturday, August 22, 2009

My Pity Party

I just said to my husband, "I'm really sad that I have cancer, honey."

"I am too," he said.

No, I'm really sad because I'm sad for everyone else in my life who has to watch me go through this. For my husband who loves me and has to helplessly see me suffer. For my Mom who lost a daughter already to cancer. For my son who loves me and doesn't know what to say. For my daughter who needs me right now; who was counting on me to be there for her; lend a hand as she adjusts to the new baby.

I'm especially sad for Ava. We stopped in to see them briefly yesterday. I covered my shaved head with a navy blue puffy cap I bought at the Dana Farber 9th Floor Boutique on Wednesday. I think at 2 1/2 Ava understands more than any of us give her credit for. She always checks me out, my earrings, "I like your earrings, NeeLee," or necklace. She always studies my face and gives me big hugs and kisses. Yesterday she kept her distance. She wasn't at all curious about my new, navy blue hat. When I took it off so her mother could inspect the shaved head, see the scar from when I fell off the swing when I was six, Ava was in the room, she never even looked at me. She wasn't curious. Not one bit.

I think she knows something is wrong. I think she has been listening to her mother on the phone with me, or updating someone about the latest news and that Ava doesn't know if she should ask questions or not. Ava wasn't herself with me yesterday. I sensed it. She and I have a connection and it wasn't there yesterday. I can't shake the image of her not even glancing my way when her mom exclaimed, "Seeing you with your head shaved, it's amazing how much Brian does look like you, Mom!"

I'm also sad for my extended family who live near and far. Everyone is so worried about me, about us, about the future. Cancer, it's such a question mark isn't it? Once you have it, you never know if you'll have to deal with it for the rest of your life, however long that ends up being. Like, did my sister ever guess that she had lived half her life at age 22?

I Hate the Mirror

Seeing my image in the mirror, no hair, looking like a cancer patient--I don't know, it makes me feel more like a cancer patient somehow. And when it's in the middle of the night and the umpteenth trip to the bathroom, thinking two days of laxatives and stool softeners are finally going to do their job, it's a major effort to avoid looking at my image in the mirror. I crawl back into bed each time and realize the gravity of my situation has perhaps escaped me 'til now.

I have breast cancer. I just shaved all my hair off my head and I have to reposition myself two or three times so I'm not laying against the grain of the stubbles that haven't fallen out yet. I'm thirsty but the bottle of water on my bedstand tastes awful to me. I'm hungry, I mean really hungry, and know I'll have to get up and eat a little something even though it's 1:30 am. Yet, I don't want to put anything else down my throat for my stomach to have to process. I shudder at the image of adding more bulk into my body that isn't passing food through properly. I finally have to eat something and remember the can of apricots in the cupboard. Good for constipation and the juice will quench my thirst. It works. I feel better, crawl back into bed and sleep for 4 hours straight.

Friday, August 21, 2009

Taking Control

When you know your hair is going to be completely gone and you know it will happen within the next four days and you are already getting handfuls whenever you run your fingers through your hair, you know it's time to take control.

I texted my soon-to-be 32-year old son, "Hey Brian, would it be too weird for you to shave my head? It's coming out fast and a real pain today. It wouldn't take too long if you could fit it in. Call me."

"I think I could do that. I'll call you in a few and we can discuss."

Excellent, excellent! It was only hours before I could be rid of this shedding mess. In the process, I got to snuggle my 2-year old grandson and watch his playful antics and have some belly laughs over them. Brian carefully shaved my hair into a mohawk style and we got pictures and laughed some more before he finished. Now I feel so much better. The short little stubbles of hair continue to fall out, but the soft pink cap is catching them and it is much easier to cope with the mess that way.

I have unfortunately, once again, mismanaged the constipation aspect of post-treatment days. The anti nausea drug Aloxi is responsible and I should have taken Senekot the night before the treatment not Colace. Oh well, since treatment I've been taking Colace three times a day and 2 Senekot at bedtime for the past two nights. Sooner or later it'll break loose.

All in all, this third treatment does seem to have a different feel, perhaps I've found the secret of embracing breast cancer instead of resenting it. I recently read in a book that the way to welcome difficult things life dishes up is to:

let go of our desire for security and survival
let go of our desire for esteem and affection
let go of our desire for power and control
let go of our desire to change the situation

I often fall asleep at night with these words in my prayers.

Thursday, August 20, 2009

Three Down Six to Go

Buck and I, (that's my husband John whom I've called Buck for forty years) somehow manage to get up at 4:00 am when we need to. Yesterday, my first appointment at the Dana Farber Cancer Institute was at 6:30. Traffic on I-95, to Route 1, over the Tobin Bridge stayed light and we were there by 6:15. The elevator timer forced us to wait on the first floor until Floor 9 became an available destination at 6:30. We arrived to deserted check-in stations, not a soul around.

"We were told to be here at 6:30, were't we?" I said to Buck.

We tried to be patient, but the mere fact that we made the effort to honor the timetable and they didn't seem to care to do that, left me impatiently shaking my knees and searching for any signs of human activity anywhere on the floor. It was just about 6:40 when someone finally showed up and checked us in. No harm done. Got right through to be weighed, have blood pressure checked and then on to the IV nurse. We were in fact done with all that a half hour earlier than expected and had to wait for a while to see my oncologist.

I pulled out Jhumpa Lahiri's Unaccustomed Earth. As always, she pulled me right into her short story Once in a Lifetime. So cleverly written in an unusual voice of a young Bengali girl speaking to a boy three years older whose family her family had befriended. Of course I didn't get very far before I was called in to see my oncologist.

The pain in my lower back that caused me to feel like I had a intermittent pump inside me, scared me to death and sent me running to the emergency room last Tuesday night had nothing to do with normal was the neulasta that Buck injected into the fleshy underside part of my upper arm to stimulate white cell production in my bones. Dr. A. has seen it a couple of times and the timing was right, about six days later, and it may or may not happen again. The good news was the tumor had visibly shrunk after two Avastin treatments. "I love this drug," said Dr. A.

We were up on Floor 10 for my infusion by 8:30 and on the road home by 12:30. I felt pretty good right after the infusion, however, on the ride home I reclined the car seat and slept a good share of it. It wasn't as bad as the second treatment, but it still isn't much fun to feel like crap, have a headache that won't quit, and even water doesn't taste good to drink! Yet fluids are so important at this stage of the game. Jello is good, vitamin water, fruit juices with ginger ale, they are all good and they all have those dreaded calories in them, in the form of white sugar too!

Just as I did after treatment 2, I ended up going to bed at 7:30 to try to escape the headache but of course I'm wide awake at 3:00 am. I will gradually have to recalibrate all of this over the next few days. Sitting here at the moment, drinking lemon zinger tea with honey, I'm having just a little indigestion, heartburn maybe. I've been taking Colace 3 times a day beginning yesterday and took two Senekot before bed. Supposedly, that's going to keep the systems from getting clogged up like last time. That'd be nice!

Tuesday, August 18, 2009

The Beginning

"Oh my God, I have a huge lump in my breast!" My exact words when I probed my right breast to see why it hurt. "Great! Now I'm going to have to deal with serious illness. Shoot! Bummer!" With shaky fingers, I scrolled through my Treo addresses to find the number for my ob/gyn. Got an appointment that day. Was told it was mastitis.

"Unusual, but not unheard of in post-menopausal women," she said. I was given a 10-day supply of antibiotics and a follow-up appointment. "I don't think the lump is cancer," she said.

When I returned for the follow-up appointment, she didn't like the fact the lump was still there. "I think you should go see the breast specialists. I still don't think it's cancer, but they deal with these things everyday."

Two days later, I innocently begin my breast cancer journey. I didn't expect that it was breast cancer, but within five minutes, it was obvious this specialist was very concerned about what she was seeing on the ultrasound. She did a biopsy on the spot. Two days later, I got the call. That was July 1, 2009.

It turns out I have Stage II, Level III triple negative invasive ductal carcinoma. The tumor is 3 cm and appears to be contained to my right breast. However, it is a very aggressive cancer and we couldn't delay treatment. The plan was to shrink the tumor, then try for a lumpectomy. After consulting with a local oncologist and since I live less than 2 hours from Boston, I quickly made an appointment for a second opinion as to treatment. It turned out Boston has a clinical trial drug that I qualified for which was not available to me locally in New Hampshire. I signed on the dotted line and on July 22, I received my first infusion of the trial drug, Avastin, only. On August 5, I received my second infusion, 3 drugs, Adriamycin, Cytoxan and Avastin. It took me five days to recover because I was so new at it all that I mismanaged my nausea medication and ended up constipated, then took too much Senekot and had diarrhea!

And all that brings my journey up to date. My third infusion is tomorrow morning. I have to be in Boston at 6:30 am. Bright and early has its benefits--first to get my IV, blood work and perhaps one of the first ones into an infusion chair! That also means, home early, perhaps as early as lunchtime!