PREPARING FOR THE STORM

The island was barely visible during the storm. The geese and mallards had taken shelter hours earlier when the sun was still brilliant on this crisp January afternoon. They always know when and how to prepare for a storm. One lone goose lagged considerably behind the rest, and finally flew close to the island, honking loudly and following the sounds of their honking to guide him safely. I long for their instinct. A storm unlike any other I've seen is just ahead of me, and as much as I've braced myself for it emotionally, there are many things to do before I find myself in the midst of the turbulence, ill-prepared after the mastectomies and the long painful path to recovery. I'm terrified that I'm as blind and lost as that lone goose.


With each day, there are people who e-mail or call me, or something surprises me in the mailbox. I wonder how my name has been so quickly circulated. The first surprise was a huge package delivered last month. It was the Lance Armstrong Foundation LiveStrong, a large yellow three ringed workbook, stuffed with information, material to read, links to web sites, forms to fill out for assistance. I began to receive numerous e-mails from the LAF LiveStrong social workers, financial advocates, and case manager.


My breast surgeon's nurse signed me up for some assistance, and within a week the Bridge to Recovery, a local chapter of the American Cancer Society, sent me brochures, followed by a book about nutrition for cancer patients. Inside the book was a very warm welcome letter from a member of the American Cancer Society, and a kitchen magnet with their 800 number, and the words: Hope. Progress. Answers.


I admit I felt hopelessly lost until yesterday. I realize now that there are experienced people who will navigate me through this storm, in the same way the geese escorted the lone one safely to shelter. There are clinical professionals, my dear psychiatrist, and cancer survivors, who are all leading the way. With the support of caring friends, and my precious family, I'll make it through the storm.

The above photo was taken by Jim Lenahan.

GOT SCISSORS?

I look in the mirror this morning. “What did I do?” I take a brush and wet down my hair, squirt some Paul Mitchell the size of an apple and wonder where to scrunch. No more long beautiful auburn curls cascading on my shoulders. Where do I begin? My bangs run across my forehead, rather ragged and uneven, giving my forehead a tilted appearance, as though I am wearing severely bent eyeglasses. The hair at the sides is pathetically short. I shudder when I look at the hack job I did on the back.

I’ve always had long hair. The thought of losing it when I go through the chemotherapy has been plaguing me. I’ve just about exhausted my thinking about the surgery, recovery, the radiation treatments, and all the symptoms, especially the fatigue. I’m feeling the fatigue now because the cancer isn’t being dealt with yet. So recently I began to seriously think about having my hair cut really short, military style, before the surgery, just so I won’t have to bother with this devastating aspect later.

I guess that’s what motivated me to reach for the old reliable utility scissors hanging on a hook in the kitchen. I’ve used these scissors for opening boxes, cutting through annoying hard plastic packaging, and even vinyl blinds. I figured they’d meet the challenge of cutting through 8 inches of hair. Little did I realize how tired these scissors had become. As my left hand was gripping the rope of hair, my right hand was working the blades rather painfully. After a few minutes, I discovered the blades weren’t working at all, there was no hair on the floor, and my right hand was red from gripping the scissors furiously.

Now what! I had a huge clump of hair in my grasp, running around the house searching for a sharp instrument, feeling much like I was holding my own head running away from a dull guillotine. Great!! I remembered my old sewing box buried deep underneath a pile of hardcover books that no one has ever read, but promise they will some day. With one hand, I finally uncovered the sewing box, and discovered some scissors. Well, not exactly scissors in the sense of being useful to finish the job at hand, but nonetheless, they would have to do.

After a half hour of chopping and trimming, I finally left it at that. Pinking shears can do just so much.

Definitely, with my oversized long tweed coat and my gloves with the cut-off fingers, I could easily pass for a homeless bag lady.

"I Can Do All Things Through Christ Who Strengthens Me"

Family means everything to us. We are in this fight for our survival together. We are facing personal hardships, and collectively encountering the effects they have on the rest of the family. I appreciate the well-intentioned professionals who offer resolutions to our difficulties, but they fail to realize we are not like most families. We remain together to see things through, to help one another, and give each other encouragement and love. We don't toss an elderly family member to the care of the state when we are able to care for her with in-home support. We don't kick out our young man who fights off the demons of addiction just because he loses a battle once in a while. We help him up, dust him off, and give him the encouragement he needs to fight the next battle. We know each other's idiosyncrasies, weaknesses, and strengths. We rely on each other for hope, understanding and forgiveness.

We can do it. This 94-year-old woman will not go into a respite home, or nursing facility for the time I'm in the hospital having double mastectomies, recovering, and during the long course of treatment which promises to knock me off my feet for a good long while.

We have the Lord to give us strength. He has given us courage and wisdom and love, and has provided for us in very lean times. He will make sure that we are taken care of, as a family, together.

THE GOOD FIGHT

Yesterday my son and I were talking in the kitchen. He was discouraged and saddened by our dilemma, the direction the course of our lives has suddenly taken, and all the obstacles that seem to be placed before us, as though we are somehow cursed. Within the past couple of months, I've been diagnosed with breast cancer, and soon I'll have major surgery with intensive adjuvant postoperative therapy. This event by itself impacts the dynamics of our living situation as a family unit caring for my 94-year-old mother. It's quite possible that she will need to be placed in a nursing home for an indefinite time because of my inability to care for her.

For years we have gone against the cultural grain, America's solution for taking care of the elderly. Despite the professionals' advice from all corners, we've persevered and taken excellent care of her at home. The rewards far outweigh the inconveniences.

She delights in hearing her grandson talk so passionately about politics, animal rights, his dreams of becoming a broadcaster or photojournalist, football, baseball, old time radio....she listens, and laughs heartily because he's hilarious and witty. When he's not looking at her, she shakes her head and wipes the corner of her eye. She tells me, "I just love that young man. He's so smart. And so handsome."

When Chiefy sits in her lap, and she's gently patting him, he eventually cradles his chin on her arm and often falls asleep to the humming sounds of the chatter around him. She loves my cooking, my coffee, and everything I try to do for her. Some mornings when she barely makes it down the hallway, rolling her walker into the kitchen, her face lights up when she smells the coffee and knows that she has another day on this earth with her family. God has blessed her with wonderfully good health, almost pain-free every day except for morning stiffness.

She is so content sitting at the kitchen table, watching Jim, Chiefy and I, or looking out the window at a cardinal visiting the railing on the porch. When we're in our separate rooms, she's happily reading her books, still sitting at the table, waiting for us to reconvene for 3:00 coffee and cake, a tradition we've kept going for the past six years.

Jim came to me later in the day, and urged me to think again about what we should do. He reminded me of how people in the old country take care of their elderly. "They do not have nursing homes; they all live together until the parents die." He encouraged me to think about keeping her here while I'm getting surgery. When I come home (with tubes and drains and very weak), maybe the VNA could take care of me, and we could step up my mom's PCA visits.

I was thinking about it seriously, and asking the Lord to please help me with this, when my sister called. She also has breast cancer, although hers is metastatic to the bones, and lung and brain. We had a wonderful conversation about her end of life issues, her fears, and what she would like to do from now until that time. We both agreed that she's not "there yet" and should be thinking about today because she's feeling quite well, and tolerating her treatments without any serious toxic side effects.

Then a brief pause. I was looking out the window and watching a swan flying by the island, and it was as though an angel were flying. I could not speak because my voice would give me away. My eyes were filling up quickly with tears, and I could sense that hers were, too, but she is strong and mellow, and much older than I am. She suddenly asked me, "Have you had second thoughts about what to do with Mom?" I was astonished. Where did that come from? It didn't take me long to realize it was the Lord's doing, simply by opening up the discussion and listening to what she had to say. She affirmed without knowing what Jim suggested. Isn't that how the Lord works? He answers prayer, and affirms through others, and also in his Word.

Yesterday, I talked to Jim about "fighting the good fight", not looking at the obstacles you've already overcome, but running the race and concentrating on the prize, the finish line. When you come across the hurdles along the way, they'll be easier to jump over, because you want to finish the race to the end.

Today I was reading the Bible, specifically the second letter of Paul to Timothy.

"But you, be sober in all things, endure hardship... I have fought the good fight, I have finished the course, I have kept the faith."

HOW MUCH "BREAST CANCER AWARENESS" IS ENOUGH?

I was told to make a list of "good" questions to ask my surgeon at the preoperative appointment before having bilateral mastectomies. These questions should be based on the materials I was given to read, and my own research on the internet from reliable sites. Additionally, she would answer questions I may have after consulting with the radiation oncologist and medical oncologist about my postoperative treatment.

Really, at this point, I have just a few. They have to do with the popular phrase "breast cancer awareness."

Having worked at Dana-Farber Cancer Institute, and continuing my health information documentation editor speciality in oncology, particularly breast cancer, I would say that I've been very aware, always ahead of the curve, excuse the pun...

Nine years ago when I had my first breast cancer, my focus was intense on keeping myself healthy, making sure I had a fighting chance to prevent the cancer from recurring. After the surgery, I was placed on five years of tamoxifen. I followed up closely with my oncologist with physical exams, blood tests which included tumor markers, and mammograms at six month intervals. When I learned about BRCA1 and BRCA2 gene mutation testing, I inquired about being tested to see if I carried the gene. It was "inconclusive". I have a very strong family history of breast, uterine/ovarian and colon cancer in aunts, my sister, and my mother. This history, and my own diagnosis of early stage breast cancer, put me at high risk for recurrence. The decision was made to alternate the mammograms with breast MRI scans every six months. I continued this regimen over the years faithfully. I also kept aware of new breast cancer treatments, different medications that had gone through appropriate clinical trials and were now FDA approved, and the latest information I could possibly read, every day, while editing the medical documents. I have been a long-time subscriber of several medical journals. I have access to medical information beyond the popular web sites. These include medical sites that provide research results from clinical trials and studies conducted all over the world.

I was fully aware.

In October, as usual, I had my six month mammogram at the Sagoff Breast Imaging Center at the Faulkner Hospital in Boston. I waited for the radiologist to call me into his office and go over the films. I was delighted that he didn't see anything new or different, and everything looked the same as it has for the past eight years. I was relieved. Yet, I knew about a rare type of breast cancer that appears on the top of the skin, and therefore cannot be picked up by a mammogram. It appears around the nipple and areolar complex, and looks very much like eczema, so most people think it's a rash from new detergent or soap.

"Would you mind taking a look at this?" I opened my examining robe and showed him the rash. I did not expect him to tell me it was eczema. What I heard him say is what I expected.

"Well, it does look like this rare type of breast cancer, Paget's. When are you seeing your oncologist?"

Fortunately, I had an appointment with my oncologist the following day,who agreed with the diagnosis of Paget's. A biopsy was scheduled in a few weeks. The pathology showed not only Paget's disease of the breast, but also ductal carcinoma in situ underlying the areolar complex, and invasive ductal carcinoma, approximately 1 cm. The surgeon was suspicious. An MRI was done to look for other possible sites of cancer in the same breast and also the contralateral breast.

What I heard from my surgeon was not what I had expected. The MRI results were positive for a larger, more "significant amount" of cancer. The tumor measured 3.5 cms.

Prior to the MRI, the surgeon and I had discussed mastectomy and reconstructive surgery, but I knew now that the treatment plans would change. The surgery would include a sentinel lymph node biopsy to see if the cancer has spread to the lymph nodes. We also agreed that bilateral mastectomies would make sense in my case. I guess the part of the treatment I wasn't prepared for was the adjuvant radiation and chemotherapy. I thought I could get away with surgery alone, like I did the first time nine years ago. This is a complicated presentation. Paget's, underlying ductal carcinoma in situ, invasive ductal carcinoma, and now a 3.5 cm tumor of which the immunohistochemistry won't be known until after surgery. It may not be the same type of cancer; it may be a more aggressive, fast-growing cancer.

I'm not concerned now about reconstructive surgery, putting myself back together to look anatomically beautiful and feminine again. So I have no questions about what kind of implants, silicone or saline, or tissue expanders, or prostheses. My questions have to do with the success of the chemotherapy, the possibility of being placed on Herceptin, and my ability to tolerate it, the survival percentages over the next 10 to 20 years, and the 3.5 cm tumor's immunohistochemistry, i.e., will it reveal metastatic cancer? Will I wake up one morning and discover a palpable something underneath the skin, my arm, anywhere else in my body? Will the follow-up interval CT scans and bone scans reveal metastases to the liver, lungs, or bones?

Yes, these are very "good" questions to bring to my appointment next week. There is one question no one can really answer. I've done everything I could to be proactive.

Someone, please tell me, how much breast cancer awareness is enough?

GIVE US THIS DAY...

Recently I learned I have breast cancer.

From the moment I learned that I needed a mastectomy, actually bilateral mastectomies, it became evident that my physical appearance will change dramatically over the next year. After the surgery, the treatment will include radiation and chemotherapy. Not only will I lose my breasts, but also my very long hair. I won't be able to have immediate breast reconstruction until after the treatment. For a while, I will be physically "beaten up" by the treatments, so it really won't matter much what I look like because I probably won't care. Excessive fatigue, nausea, vomiting, and severe depression are the standard side effects of the treatments.

Breast cancer has taken away the very undeniable essence of the feminine and nurturing aspects of being a woman.


This is not my deepest concern, though. At this time in my life, having breast cancer has turned my world inside out. Family events, which normally would have taken place in their own time, will now happen on an unnatural time line, one that is measured according to and because of my cancer treatments.


My family consists of my 94-year-old mother, and my grown son who helps me take care of her. We all live together in this sweet little cottage by the pond. We've made a commitment six years ago to come and live with her and take care of her so she could continue to live here instead of going to a nursing home. Now I must betray that promise. I will not be able to care for her, and my son could not possibly care for the both of us. It appears that very soon, our little family will be living in separate housing situations. This is very painful, and breaks my heart every time I sit with my mother at breakfast, or brush her silver hair, or watch her in secret as she covers up her stuffed animals with her shawl before she goes to bed.


The Elder Services are involved, and during their home visits, we discuss arranging her placement during the time of my surgery, but now this period has been extended because of the postoperative treatments. She is present during these conversations and at first she understood and accepted that it would be only for a week or two. I am not sure if she knows this has been changed from temporary to an indefinite living situation at a nursing facility.


She knows I have cancer, but some times she forgets by the end of the day. She is reminded when she comes silently into the living room and sees that I've been crying. Yesterday she took my face in her hands and said, "You are a very brave woman. I love you." She hugged me and kissed me on my face. I cannot imagine what she is thinking. How sad it must be for her if she realizes she is not coming back to her home after all.


She loves us all so dearly, especially her grandson, Jim. She cherishes his company, and she is so proud of him. He is very kind and compassionate, and spends a great deal of time with her, talking about history and current events, and baseball. She loves Chiefy, the little dog Jim brought into this family. We're all a family, even Chiefy, but in a few weeks, we will be separated. It is very painful to think about. Very, very sad.


"Give us this day, our daily bread…."

THE CUP OF AGONY

Oftentimes when someone is downtrodden and enduring life’s troubles, others may casually say, “We all have our cross to bear.” This, of course, refers to the cross Christ was forced to carry on his flogged shoulders—that very cross on which he was nailed, crucified, and suffered excruciating and unimaginable physical pain. It is almost blasphemous when we attempt to compare our human sufferings to those of Christ.

This morning I was reading the scriptural account of Christ’s prayers in the Garden of Gethsemane. The LORD set the cup of agony before him—this was the purpose of his life on earth. He was praying in the Garden, a stone’s throw away from his disciples who were sleeping. He was praying so fervently and in such agony that he was “sweating drops of blood”, asking first of the Father that the cup be taken from him. After an angel appeared before Christ to strengthen and encourage Him, He again prayed, “ O my Father, if this cup may not pass from me except I drink it, thy will be done”.

At any time, Christ could have called a legion of angels to help him fight off the centurions coming for him, led by Judas. At any time, Christ could have prevented his appointed fate and lived beyond his thirty-third year, a life of human manhood, taking a wife and continuing his carpentry work, raising a family, living out his years faithful to God as a human man. He knew from the beginning of time the purpose of His destiny on earth. In perfect submission and obedience, he “drank the bitter cup of agony”.

The dark abysmal times ahead of me and my family, the physical and emotional pain we must endure for a while, and the financial hardships we’ve suddenly been thrown into, have brought me to my knees before God. I have asked Him for strength and wisdom so that I may endure the struggles in my life.
This cup of agony is sweet compared to that which the Lord had to drink.

YOU ARE MY SISTER

Dear Connie,

How are you holding up with your monthly chemo? Are you beginning to feel the benefits, i.e., less bone pain, less nausea, no more headaches? I know the weather affects your pain dramatically; that's why many people who can afford it move to warmer and drier locations. Or they go on a "chemo holiday" for a couple of months and take a trip somewhere they've never been.

It's important for you to have fun, "get out of Dodge" and enjoy yourself. If you have a special friend who would go with you for a weekend trip to Gloucester or Newburyport, or Martha's Vineyard, then you should go. Have a great time for yourself. Shop. Take pictures. Eat, eat, eat.

I found a couple of photos of Paul and Annie. Adorable.

I know it must sound insignificant, but pieces of information help with my memory. Looking at those photos of when you and Annie were younger, I may begin to remember what it was like when I was that age.

Was I happy being your sister even though I was a profoundly sad daughter traumatized by our father?

I talked to Annie yesterday and asked her how you are. She doesn't want to tell me. I cannot remember growing up, you don't know that. She didn't know until I told her. I have not been able to remember many decades of my life. My doctors tell me it was a protective mechanism. Still, there was always the reference to my relationship with you, that because you were so much older, 14 years older, and left the family to get married when I was only 5, that I didn't really know who you were. I don't remember when you came to visit, or when you finally moved back to Massachusetts.

I guess the first time I remember anything meaningful was when we both got breast cancer eight years ago. We talked about it, about the similarities, the different treatments we sought, and then we went our separate ways again.

Now you are dying. Your cancer has come back so insidiously to your bones and lung, and brain. I am frightened for you, and I cry often. They told me all I can do for you is be there and listen, wait, respect your treatment choices, and the way you want to live the rest of your life, and the way you want to die. I know there are better ways for you to live, and better ways to approach the end-of-life.

You do not want to see me. It would be too distressing for me to see you in so much pain? You are right; it would hurt me to see you like that and not be able to do anything to help you.

The real reason I believe is that you do not want to frighten me because you fear I may face this some day. You are protecting me.

You are my sister.