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.