Saturday, October 24, 2009

The challenges of breast cancer in young women

 Unique and Challenging

I just wished another friend of mine a happy 40th birthday. It reminded me of what I got for my 40th birthday just this year. Breast cancer was the furthest thing from my mind when planning my life at this age. I’ve been generally healthy and enjoying life watching my young boys grow up. I haven’t lived hard, I eat whole and organic foods, I rarely eat out at restaurants (never fast food), I exercised regularly; but all of that didn’t prevent me from getting cancer. Research is going on right now that is looking at how and why women get breast cancer and I’m a part of that study. Some say being overweight may trigger something; I’m not overweight. Some say an unhealthy diet high in fats and sugars may trigger something; my diet is free of processed foods and sugars with occasional low fat meat. Genetics is another place that is being looked at. I have no family history and I was tested negative for that magic breast cancer gene everyone is talking about. What is the smoking gun? Perhaps there isn’t any one smoking gun. Sometimes people just get cancer for some reason. I have been asked so many times why I think I got cancer. Who’s to say? What’s the difference now? Why look for blame? I have it and now I need to fight it.

Before my diagnosis, I had no clue someone healthy and young like myself could get this disease. It was the last thing on my mind to check for on any regular basis. Now as I’ve turned 40, I am finding out how many young women even younger than me get breast cancer. The challenging thing is that when we have even the slightest of symptoms, we’re often told not to worry, “you’re young”, “and it’s probably nothing to worry about”. So we go on with our young busy lives never letting it cross our minds that we could have breast cancer growing inside. I’ve complained of an inconsistent odd pain in one side of my chest for the past 10 years. I was told at one point it was because of exercise and given medication for asthma. The “asthma” miraculously disappeared one year, but the tenderness remained. Once my kids were born, breastfeeding on one side was extremely painful. I was told that was normal and to feed more on the painful side as that would possibly relieve the pain. It didn’t. As my kids got older, hugging them at times was painful. I’ve done self breast exams all these years and never felt a lump. My doctor was told of my tenderness and occasional sharp pain out of nowhere, but for years, she never felt a lump either. I no longer have that doctor. Anger and blame can be felt toward that doctor, but what’s the point. Even only 10 years ago, doctors were not instructed to think of looking for “breast cancer” in someone so young. It too has been the last thing on their minds. Even currently doctors are questioning whether instructing young patients in the practice of self exams is useful.

I’ve since learned that my experience is all too common. Young women do get breast cancer. 1 in 10 women with breast cancer are under the age of 40. Young women are more likely to be diagnosed with more aggressive and later staged cancer for many reasons. For one, because our tissues are young and dense, we are less likely to “feel” anything early on. (I still was unable to feel my lump until it was over 2” in size.) The next reason is one that has to change in the medical community as well as the community at large: our complaints and worries are not taken seriously. And finally one other popular reason is simply lack of early detection methods and knowledge in young women.

In fact, although breast cancer is more common in older women, about 13,700 women younger than 40 years of age will get breast cancer this year in the United States. I always thought breast cancer was an older woman’s disease too. The medical community tells you to get your “first” mammogram starting at age 40. I got mine at 39 and then it was too late. Even as I went through my testing process, my mammogram was unable to identify my large golf ball size tumor. I was given an ultrasound next which identified enlarged lymph nodes under my arm. It was the next thing, a biopsy that finally gave a positive diagnosis and visibly measured my tumor. A mammogram is nearly useless, but still done initially because that is the order of things currently.

Special Circumstances

Women under 40 who get breast cancer face unique challenges as they fight the disease. Most find less information and often less support than older women with breast cancer. “Your average 30-something doesn’t know another 30-something with breast cancer,” says Ann Partridge, MD, an oncologist at Dana-Farber Cancer Institute in Boston. “It’s true that most of the research studies in breast cancer are done on older women, but since the discovery of the BRCA genes, we are learning more about breast cancer in young women.” This may be true for some and I’m glad such a test exists, but I’m worried that young women are being told that if they have a strong family history of breast cancer to go get this genetic test, and if they have a positive result, they have a higher risk. I hear of so many stories of young women who meet that criteria test positive and then get double mastectomies as a preventative measure. While I don’t consider anything wrong with a woman’s personal decision to do what she feels is right, I do feel many young women are being misinformed or simply not informed at all. Again I for example have no family history and tested negative for that gene. While October has been washed in Pink this year, the message is still predominately that this is an older woman’s disease. The infomercials that do exist primarily target women over 50.

Young women with breast cancer are truly in a unique position. A cancer diagnosis can feel particularly disruptive at an age when a woman may be just starting out in a marriage or relationship, building a career or starting a family. “Younger women are more likely to be at a stage in their life when things like sexual functioning, beauty and attractiveness, fertility and family planning may be of the utmost importance,” says Partridge. Young women who plan to have children in the future confront difficult challenges regarding treatment. Both chemotherapy and hormone therapy for breast cancer can affect the ability to have children. Younger women also have a longer time to have long-term complications such as early menopause and osteoporosis.  That said, there are even more challenges younger women face that are social and identity based.

While I consider myself lucky to be past the point of having my children, my late stage diagnosis makes me wonder about when this all really started and went on undetected. Had I been diagnosed at an earlier stage of my cancer when I began my complaints, it is likely I would have received a diagnosis around my late twenties to early thirties.  Now I simply feel "stuck in the middle".  I am now turned 40, above the  cut off for the "too young for cancer" group, and too young for the "typical breast cancer age group".   Even with breast cancer, I feel like I don't "fit in" anywhere. 

Breast cancer was the last thing on anyone’s minds when I voiced my complaints mentioned above years ago. My unique challenges now exist for my treatment. I rarely see another woman my age when I walk into the waiting room of my oncologist’s office. Most of my roommates at chemotherapy spoke of their grandchildren. At first I wondered if I’d get to see my sons grow up let alone ever see any grandchildren. I had my children after 30.  They are still young now.  It was upsetting to think such thoughts, but my fears were realistic. The later the diagnosis the grimmer the prognosis. At first their self-pity made me feel angry. Although cancer is cruel and unfair for anyone to experience, they led twice the life I’ve led. I allowed my emotions to flow, but then I knew mind over matter now was of utmost importance. All around me would follow my lead. If I was depressed and worried, my children would become depressed and worried. I should know more than anyone, that much of the time, denial is an unhealthy and disruptive mechanism. I never knew until now, a certain amount of denial can be a powerful tool in fighting cancer and maintaining a positive attitude.

Chemotherapy, Treatment and the Young Woman

It is understood that young breast cancer patients often have more aggressive disease than older women. Because young patients can usually tolerate more intense chemotherapeutic drugs, they tend to receive particularly toxic regimens.
Though this is true, the experience was not something I could prepare for in my mind. In the beginning I felt very alone in the waiting rooms and chemotherapy rooms. I was at times, mistaken by other patients as being a daughter waiting for my mother. “How is your mother doing?” asked by a stranger, met with the look of surprise when I was the one who got up when called wearing my plastic ID bracelet. Most of the time though, I was sitting alone with my husband in the waiting room apart from all of the other much older patients.

I also felt frustrated that my body went downhill so fast during my chemotherapy treatments. I watched as most of my chemo roommates came and went walking on their own and driving on their own. I soon realized that I was being given a very aggressive treatment unique from those “others” I watched walking in and out. I quickly got to a point that I needed a wheelchair from the car to the treatment room. I could not walk down the hall on my own strength. Chemotherapy had beaten my once strong body down to that of dependent and weak. I went from riding my bike 40 miles without effort, lifting weights and running with my dog; to feeling breathless getting out of bed and walking to the kitchen.

Chemotherapy also took my social life away. I could no longer be myself, as much as I tried. I became extremely dependent upon everyone around me, including my own children. I am supposed to be there for them, not the other way around. I was met by some with discomfort and coldness when I did show up wearing a scarf on my head. I was immediately excluded from certain groups because they pitied me or questioned my ability. My usefulness was taken away. I realized that many in my age group are not used to dealing with someone like me and so they don’t know what to say.  They don't know that it is just okay to behave the same way around me before I wore scarves.

Despite the many challenges, I found strength from deep inside and went on each day attempting normalcy as much as possible. I knew in my mind that if I did not dwell upon the things that were destroying my body and fogging my mind, I could rise up and fight to get my life back. This has been the largest challenge of all. My diminished abilities and everything I see in the mirror, and feel in my body only remind me of what’s there getting in the way of everything. The last thing I can’t do is feel sorry for myself. This is not a part of my nature.

If I can do anything it is to share my feelings and experience to let others know this is real and common for everyone like me. This is a disease that does not discriminate. It is not something to be ashamed of or hide from just because it is “breast” cancer. You’d be surprised though how many still treat it with shame and can’t even say the words “breast” or “cancer” out loud.

Not Alone

It has been so important to have a good support system. They don’t tell you how critical this will become in your life. I just assumed we’d figure out how to get along as we always have. When things go wrong, we have always been private people retreating and coping on our own. I assumed we would just “disappear” for awhile like those movie stars do when the have a baby or a “procedure”! We had no real concept of how much we would really need other people. Being 40 with a young family, career and social obligations, living hundreds of miles away from relatives poses its unique challenges when breast cancer comes along.
We have so many to thank. We have been so touched by people’s willingness and commitment to make life continue to run. Neighbors have manicured our yard all season without asking. Many have been bringing meals. My kids have been cared for when I couldn’t make it home from treatments before school was let out. Most meaningful of all has been the company of those closest to me, making life feel “normal” during a very stressful time.

When you have breast cancer at this age, going through it is challenging enough. You have to endure loosing your mind to “chemo brain”: being forgetful, foggy, inarticulate, tongue twisted, disconnected. Then you have to think of who will take your kids to soccer practice when you can’t drive. Others parents work too and have busy lives, or simply not enough seats in the car. You have to think of how the laundry will get done or how the weeds will get pulled when you were the primary one to do those things. You have to think about how to take care of your kids when they get sick when you’re too sick to take care of yourself. You have to feel the sadness when you can’t play with your children. You have to think of what will happen with your job and your income. You have to think of never being eligible for healthcare or life insurance again. You have to worry about becoming bankrupt with medical bills that insurance won’t cover. You have to not look or feel beautiful for your husband even though he says you are anyway (if you are fortunate to have a husband like I do). You have to endure when your children tell you they miss your hair and forget what you used to look like.  Those are just some of the things that have gone through my mind in my personal circumstance. 

For others, there are so many other issues.  I have come to learn that for many, the disease takes a toll on many relationships and marriages.  Many friendships and marriages end.  It takes it's toll on a child's mental outlook as the secure world and person they depend upon is not able to be that source of security.  It creates a world of insecurity, financial worry and puts a tremendous strain on all aspects of life.  Everyone is in a different place in life.  Every cancer and experience with cancer is unique.  Each challenge: emotional, physical, sexual, relational, financial, spiritual and social is what we all face as individuals with cancer. Remembering we are unique but  equally important is key in survival.  In facing our challenges, we must find that we do not suffer alone.

Sunday, October 18, 2009

Days of chemotherapy

I always have a roommate when I go to the Cancer Center for treatment. There are far too many people in this unwanted “club”.  As much as I don’t want my cancer to define the moment or even be a part of the conversation, it takes over too much. It is in my way. It is in everyone’s way. I simply want to have a “normal” day, a good conversation that I don’t struggle to put my thoughts together, good times with friends, to be able to play and rough house with my boys…simply…to live.

I struggle to form complete thoughts but those around me understand. It's easier to write than it is to hold a conversation.  A good evening of laughter and company is what I crave now. My personality is fogged by my treatments, but those around me take over in doing the things I normally would, trying to hide the additional stress it adds to their day.  My husband and my young boys take over the chores of the house and express that they now have an appreciation for the things I quietly do behind the scenes.  I feel a pain of guilt that my children must learn such responsibilities so early, but they seem to show pride in learning new skills.

It is ironic that the journey of my cancer and treatments parallel the seasons that come outside.  It is the beginning of fall and the leaves are dry and fall to the ground.  The color of the grass has faded and flowers have stopped blooming.  My skin is thin and dry. My hair has been gone long enough that I’m used to it being gone now. My hands are in constant pain and my finger tips feel as though they have been smashed by a hammer. My nails are yellow and brittle and starting to peel away from my fingers. My eyes are dry and my nose bleeds. If this is the outside of my body, what is it like on the inside? I run out of breath easily and my heart pounds with a simple walk. I feel pain in my chest all the time now. The doctor says she can’t feel the solid tumor anymore, but I feel the ache and the pain it leaves in its place. My breast tissue is deformed as my tumor softens and shrinks in size.  My doctors measure me at each appointment and seem overwhelmed and shocked that the chemotherapy seems to be working better than expected.

I continue to go in for chemotherapy each week and it does a number on me. I feel anxious and in a tired fog much of the time. I feel as if I’ve had too much coffee when I’ve had none for months. I go so many nights without sleep. I forget which day of the week it is as darkness changes to dawn. Dehydration is a constant battle. Complaining is not my way, but sometimes I just do. These are the realities of treatment. When I voice these issues, I find I am not alone. My symptoms are what’s “normal” to expect. I find relief in knowing nothing is unusual.  Yet, each of my room mates during my treatments seem to struggle in different ways. 

I’m tired and feeling a lot of pain, but I just want a “normal” evening of hanging out. I just can’t find a way to be myself. My mind is scattered and tired. I struggle with conversation much of the time anymore. I’m lost. My husband is still with me though. Sometimes I wonder how I deserve this care. I couldn’t be in better hands. My soul is at peace knowing my love is being returned. He is my best friend and accepts me even as I fall apart. Can a friend do anything more giving than that? I realize that fact and feel moved. I am lucky.  I have sat in waiting rooms and listened to other women share in sadness how their marriages did not survive their cancer.   I see who is by my side through this journey every step of the way. I am surrounded by the love, care and understanding of my family and friends. They in fact are the “unsung” on this long road with me. They do without complaint or obligation. Cancer may take the body of one person, but it takes the souls of everyone surrounding it. It is all consuming at times. Fighting this “battle” as they say has become my “job”. Going to chemotherapy has been my weekly existence. Others continue to remain positive around me encouraging me that it will be over soon.  I try not to count how many more treatments I have.  One more done, one more to go is the easier mind set.  

I walk into treatment without dread focussing on the friendships I have made at the hospital.  I look for ways to laugh and use my humor to cope.  I see many roommates during my sessions that are there alone. It is quiet and long to suffer through those sessions alone. Having a loving presence at my sessions weekly is the greatest gift I could receive.
Ironically, it has become a place I will miss. Not the treatments or tests, but rather the people who have cared for me so much. Though it is their job, the ones that really care about what they do and the people they care for make a difference. It could be such a lonely and cold ordeal without the people that take the time to help you think of something else.  I began my journey by walking into the hospital feeling beautiful.  I had my hair, my complexion, my energy, my smile.  These people have seen me melt away, but do not offer me the pity I do not want. 

I look at each day and I don’t want to waste a moment. I’ve always felt that way, but the feeling is more urgent now. I cherish each day and I struggle to rest when the day is not full. I know rest and quiet are just as important though, especially to those around me like those that care for me everyday. I need to allow those around me to have space and rest.

My oldest son asked to climb in bed with me last night. This time it is not my youngest asking to “snuggle with Mom”. He falls fast asleep quickly. He is peaceful and secure. And even at 9, he still needs his mom simply to be there.

Friday, October 16, 2009

Pink Sunrise

Up before dawn again. A brief time alone with everyone in the house. The sky is beautiful this time of day. My mother used to try to wake me at the beach to see this and I never could get up to join her for a walk on the beach. I fall into that rough category of the population known as “not a morning person”. She used to be so disappointed and would go alone. I understand now what I missed. It is more beautiful than a picture can share. It’s not just the pink of sunrise; it’s the quiet and the cold smell in the air. Even here where I live now in Pennsylvania, away from the ocean, the quiet beauty of the ice on the ground and lining all the trees, the low lying fog, the pink stripes in the sky. It’s fall now. Fall has come early this year. I hear people say this winter will be long and rough.  Most of the leaves have changed to a bright color already and it’s been so cold early in the season. It’s so quiet this time of day. I can hear the clocks tick.

Understanding my symptoms of treatment and coming to terms with the side effects is something that only now I can understand. The constant insomnia has been mostly a curse, but also a unique gift of time. My body has become an enemy of the dream world, but the long hours awake at night have given me the quiet time to write. During the day, my fatigue clouds my mind. At times I find it difficult to hold a conversation. I’m frustrated with not feeling like myself. My boys remind me that they miss the “old me” and that they miss playing with my long hair. Still the soccer mom; still trying to look “put together” when I go out the door, still me…somewhere on the inside.

I had one last chemo treatment before I undergo surgery. I will stop for a few weeks so that my body can gain strength and enough immunity back to undergo surgery.  My body has grown very weak and my white blood cells and platelets have poor numbers.  During this time that the doctors hope I will show a rebound, I will receive shots that are to help bring my blood work numbers to an acceptable level.  I will not be able to have my surgery until I am strong enough and my immunity improves.  I am told that the shots will cause another set of side effects such as extreme bone pain and flu-like symptoms as my bone marrow goes into overdrive to produce the white blood cells my body is deprived of from chemotherapy. 

I'm glad to be getting a break from things for a couple of weeks. As much as I'm glad to not return to the hospital for this time, I will miss seeing the staff. They have all been very caring and good at making the experience bearable. I've remained strong, but it's taken a toll on my body.  I also plan to stay home as much as possible dodging the flu bullet. My immunity couldn't be weaker at the worst time of the year. I also have young children in school surrounded by the cold and flu season.  Others do not understand my vulnerability currently and it will be a challenge to avoid situations where I am exposed to others who are sick.  Neighbors surprise me at the door with concern and kind offerings as they excuse their coughing and say hello.

Chemotherapy, now that’s a word that is melodramatic. More like mini Chernobyl in your body! Yet it’s what is out there to eradicate the cancer cells from within a living body.  It doesn't know the difference between healthy cells and cancer cells.  It destroys the cells that are growing the quickest, which is the cancer, but also cells such as the hair, nails, taste buds and some skin. It has been a difficult road to undergo this treatment, but it seems to be shrinking the tumor and slowing its growth, which will make surgery easier.  It helps me feel like I’m doing the right thing. Those that are near me accept it and quietly watch me from week to week as they see what it is doing to me. The progress of my cancer was so aggressive and fast spreading that it was just too late for me to do anything else. It was on its way to killing me very soon if I didn’t stop it in it’s tracks with something desperate. The later the diagnosis, the grimmer the prognosis. All numbers and ink, I know. Statistics and survival rates are thrown at you in the beginning as you are told what treatments are available to treat your particular cancer.  And so for me with later stage cancer, the options for conventional and unconventional treatment dwindle.

I am also learning that my choices of saving my breast vs. reconstruction may not follow a conventional path.  My breasts were small and my frame is thin, but my tumor is very large and has had years to stretch my breast tissue out of proportion.  If I am to undergo a full mastectomy, I may not have the necessary tissue for a proper reconstruction.  I am being told all of my options and risks depending upon the outcome of this initial chemotherapy.  I will also need radiation which limits my choice of "healthy" tissue to use for reconstruction.  The affects of radiation will change the tissue and I cannot have reconstruction until after radiation is completed, as radiation would deform any reconstructed tissue.  In addition, any implants needed would be damaged if subjected to the radiation treatment.  The idea of being left with the option of wearing a prosthesis does not sound like something I will feel comfortable.  I am already looking into my closet and making a pile on my bed discarding all of the v-neck tops and "cute" dresses that I will never wear again in comfort.  I have traded my bras for shelf bra camisoles as bras have already become painful to wear.  I had been stuffing my unaffected side to match my "overgrown boob", but now it is a matter of comfort.  This is the season of sweaters and loose fitting clothing and so I am able to hide my deformity for now.  I know when summer comes, I will mourn the loss of being able to wear bathing suits and tank tops.  It may sound like a simple thing, but appearance and comfort will now become a battle less to do with vanity.  I have decisions to make.  Others who have survived breast cancer are telling me their stories and what they have undergone with reconstruction.  I am not ready to hear this part.  I am carrying my hidden dragon and it continues to ravage my body and mind.  I am tortured by the thoughts of being forever changed.  Peace comes in the simple things of looking upon the pink skies of pre-winter dawn.  I can only handle today.  Tomorrow is too far away.

Monday, October 12, 2009

In one year...


Taken about a year ago. Me and my boys...and one happy dog of course.












Now...

(Notice the same PJs on a different boy now!)

Friday, October 9, 2009

Pity

I never saw a wild thing



sorry for itself.


A small bird will drop frozen dead from a bough


without ever having felt sorry for itself.

D.H. Lawrence

I have time to myself again. I have a lot of time to myself now. I just got off the phone with a concerned old acquaintance. It was a rather exhausting phone call. Clearly she was uncomfortable with the news of my illness and wanted in some way so much to help, despite my protest that those who are here to do those things are already in place. It was an odd phone call. Questions and concerns solicited by this person clearly fishing for more information to report back to a gossip circle. A person feeling compelled to offer me pity, only to be surprised that I am not wallowing in self pity. Most of the kind of help offered by all these concerned people is self-serving. I’m not talking about everyone, just "these" people that suddenly claim a sort of friendship in my time of "need". I did not exist until this happened, and now "these" people want to help because it’s what makes them feel good, and it helps them not feel so bad about me.  I am not the kind of person that likes this sort of attention and I do not like sharing the intimate details of my health in order to give a few something to do.  A phone call out of the blue. After this, I probably will never hear from her again. These are some of the people I was fooled by and attracted to in my youth as I searched for safe friendships in my insecure ullage. They wear two faces.  Now these people seem like the brittle colorless straw found in the horse stall. Sometimes sweet enough to chew on between your lips; other times covered in shit.

Okay, I'm the sick one here.  Wait to hear more before you judge me.  She being many layers outside my social circle voiced feeling sorry for me. I mean she really put it out there.  "You poor thing."  "How can you go on?  I would just be so depressed if I were you!"  Not really there to listen or support me, but rather to feel good about being helpful. Admonishing me for not being utterly depressed.  I must be in denial.  Feeling awkward about discussing my illness, yet this was the sole purpose of the call initiated by her. She asks about my illness, yet stumbles over her words. She is inappropriate and ignorant, but I’m sure doesn’t mean to be, or realize. She does not know me well and my strong will.  I assure her I am fine and cared for and that I appreciate her sentiment. My response is trite, but an attempt at polite appropriate social grace. I lead the conversation away from the topic of me, yet she insists she must organize some "help" in the form of foil covered dinners made with the love of total strangers. Along with this comes the rules on how I should label and return dishes when finished with the donated meals.  I am already dreading the amount of energy I will need to entertain total strangers at my door and collect phone numbers and meeting arrangements for returns and so on.  Perhaps they are used to others in need who have the desire of such attention. It is not the help I need or want at their convenience. This is not a broken leg or the flu. They do not understand what kind of support we need but rather they insist. I am made to feel guilty for saying thank you but declining. 

The fact is, my husband is a great cook.  I do have young children that will not have the mommy taxi for a time.  I do not have babysitters or family to help.  I do not have a maid to clean my house or do the laundry.  I will not be able to drive myself to my chemotheraphy and back.  I will not be able to cut the grass or shovel the snow when it comes.  They do not ask about those things.  I do not want to be a project.  More unhelpful helpfulness.

Those are the people who simply don’t understand who I am. I am not like them. I am public about my illness and my strength, because I am confident and I feel compelled to share my story to inspire others to fight this illness and why we need to find causes and cures. I am open when I choose, not when I am forced. I do not wish for pity or attention of that kind. It is a nuisance to me. I know by my own wisdom that they innocently believe they are caring and helpful. They truly mean no ill-will because they are not thinking beyond their own intentions. I am sure to accept their kind notions politely, but the pity does not fit into my will. The pushiness is wearing on my soul at this point however. They serve to fill the unknown gaps in their esteem and enjoy the prize of social grooming when their charitable work is done.  I am certain from their perspective, I am the poor lost soul facing death and gloom.

When they see me, suddenly the conversation is only about cancer.  Now that I have it, I must know everything.  Now that I have it, it must be all that I want to talk about.  I listen to so much unwanted advice and pity.  They claim they understand what I'm going through and assume everyone’s experience must be the same. They share that they had a relative who had cancer, and so I am forced to listen to the stories and be comforted by the proof of their apparent understanding for my situation. Most of the stories that are shared are about their relatives twice my age.  The "cancer talk" is their way of relating to me I suppose.  I feel as though my real identity has been stripped away.  I can't breathe under the weight of this new identity, what they see.

These are the souls that need constant filling, they demand constant grooming. They must serve and do good deeds in order to feel purpose. Service for a prize. They brag on good deeds intended or done. Their self-esteem is on a daily meter controlled by others actions and opinions. For whatever reason they believe that acts of service is what they must do to be whole. They must be public about their actions.  Then I am painted as weak and helpless.  They want to take credit for any improvement I make.  This damages my strong fighting spirit. These are the people separate from those who intend good for the doing, because it is in their heart, in their nature.  There is a different energy felt in pity from the comfort of concern.  Concern is born out of love.

I am the soul that looks after my husband and my sons.  I have held the hand of many a friend through crisis. Now I look in the mirror and I see what they see. Physically I am changed. I do not recognize the face in the mirror. I am identified by my illness and not by inner soul. The eyes I see lack life and shininess. I am tired. I recognize what I see as me, but then I look away because it is not me. "I look like a cancer patient!" I chose not to wear wigs. I chose not to hide. This is the face of cancer. This is how it looks. It is not cute, pink or fuzzy. Why are people still ashamed? Why are people still uncomfortable? With how many people have cancer, we should all be experts at being around cancer. But people still hide it. People are still uncomfortable. "Breast" cancer is too embarrassing to say for many. I am shocked by people’s prudishness sometimes. They are afraid. It is too much to comprehend for most. I know that. Comfort comes in the knowing. It comes in the journey. The dragon follows me wherever I go. To everyone else, I look like the dragon.

Thursday, October 8, 2009

The Tree

Photograph by Hella Hammid


Photograph by Hella Hammid

I am no longer afraid of mirrors where I see the sign of the amazon, the one who shoots arrows.
There was a fine red line across my chest where a knife entered, but now a branch winds about the scar and travels from arm to heart.
Green leaves cover the branch, grapes hang there and a bird appears.
What grows in me now is vital and does not cause me harm. I think the bird is singing.
I have relinquished some of the scars.
I have designed my chest with the care given to an illuminated manuscript.
I am no longer ashamed to make love. Love is a battle I can win.
I have the body of a warrior who does not kill or wound.

On the book of my body, I have permanently inscribed a tree.

Cancer Research getting somewhere

Nobel-Winning Work Has Cancer Implications
Article date: 2009/10/05

The work done by scientists who received this year's Nobel Prize in Physiology or Medicine may have implications for cancer research.


View Article

Tuesday, October 6, 2009

Getting ready for surgery

Getting ready for surgery. One more treatment behind today. Another day forward! Keep moving. Gotta keep moving. As long as I'm moving, I'm not beaten. I found my smile again and I'm ready to keep going. I need moments to rest and to mourn, but then I need to smile again and feel alive again. My boys are all cheering me on. They watch my every move. They are the light. It makes it so much easier to see beyond what's right in front of me.

Saturday, October 3, 2009

Preparing for surgery

Finished my last big chemotherapy treatment. I guess it should feel like a big stepping stone, except that I'm back in the same chair each week continuing with a different treatment. So it doesn't feel quite like an ending to that yet. The treatment so far has very much had a positive effect on my tumor. The doctor can no longer measure it physically at this point. She was so pleased with my strength and progress and admitted pushing me very hard with my treatment. With a hug she celebrated my attitude and success so far. And so, now it is time to prepare for surgery. I don't know what's the more daunting task: having enough time to mourn the changes about to take place, the trip to the hospital and back and all of the recovery required, considering the enormous demands and commitment on my family and friends, facing life ahead with alot of uncertainty, stopping for just a moment and realizing how fast this came into our lives and changed EVERYTHING. So many things I can't even mention. The One thing it has not changed is me...the real me...not what everyone sees on the outside for now...the tired me, the bald me, the sickly me, the medicated forgetful me, the quiet me. It's all the things everyone is putting up with for now while I work on the inner me, physically, emotionally. So many things that they don't tell you about breast cancer up front. Each woman's journey is so different and yet so many assume it's all the same. I've taken on researching everything and questioning everything I have to go through. It's been conflicting at times needing to make a choice that is something I might not normally take on, but instead it turns out to be the best choice that will save my life in my case. This is where I take on a new cause in my life to support work that will offer more effective choices of treatment over lack of choices and death sentences to not just this disease, but cancer. Let's stop labeling and judging how and why people get cancer, and spend our efforts finding out how cancer is triggered to find cures. We can eat right, live a healthy lifestyle, and it just doesn't matter...cancer does not discriminate. Society has chosen to judge how some people get cancer, but what' more important and helpfull? To care and understand and learn about the mysterious things that come along and bring us harm and find ways to deal with them? Or finding ways to label, find fault or blame. Sometimes cancer just happens. One in eight women now will wake up to face breast cancer.
However well I become, however long I survive...know I live my each day to the fullest. Not because of all of this, it has always been my philosophy that life is short and precious. I will keep fighting and hopefully all those around me will wait patiently for me to get "back to myself". I will be walking my first Komen walk with my dog Maggie on the 18th of October, the day before my surgical consult appointment. It will be a good day to focus, to think, to press onward.

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