Search This Blog

Sunday, January 30, 2011

Happy Birthday William Ellis Greenbaum 01-30-99 to 01-30-99



It was a typical cold and rainy winter's day in January 1999. I was living in Seattle at the time. The festivities of the holiday season had come and gone, but for many reasons, my family had very little to celebrate that year. My grandfather on my mother's side had just passed away a couple of weeks prior after losing his grueling battle to melanoma. My mother had not only been visiting from California to spend her last Christmas with her father, but also to support me through a very difficult first pregnancy. It was a Thursday afternoon and together with my mom, I headed to the University of Washington Medical Center for a doctor appointment. At this point, it was almost as if I was living at the medical center as I was going back and forth for various reasons on a nearly daily basis for anything and everything from routine exams, specialized tests and procedures to emergency room care.


I found out I was pregnant in August of 1998. I was over the moon as I stared at the pregnancy test stick, hardly believing my eyes as I watched it turned from white to pink, to darker pink! David and I had been married for just about 3 years, and an addition to our family was always in the back of my mind, but because of the condition I was born with, getting pregnant and then carrying a baby to term was venturing into uncharted territories, not only for me, but for the posse of doctors I had grown up seeing. Its not that women with my same condition had not had successful pregnancies in the past, but I didn't know of any, at that time.


Bladder Exstrophy mainly effects one's urinary tract system (bladder, kidneys, ureters), but in most cases the reproductive system is also impacted. The degree to which it is impacted greatly varies from individual to individual. In my case, I was born with an abnormally shaped uterus, specifically termed a "bicornuate uterus" or a heart shaped uterus. I also had a septum in the middle which is a piece of abnormal tissue that compromises the integrity of the uterus, complicating my ability to carry a pregnancy by potentially limiting fetal growth and causing pre-term labor. My pelvis was also abnormal from birth which required a surgery at 6 months old, at which time, my pelvis was purposely broken, then re-set so that I would be able to walk normally. In addition, I was at much greater risk of developing urinary tract infections of both the bladder and the kidneys and because of the numerous abdominal surgeries I had undergone throughout my childhood into young adulthood, my abdominal wall lacked strength as all the muscle had been cut through numerous times.


Most people probably wouldn't have attempted something as risky as pregnancy was for me, but all I can say in response is that I knew then, just as I know now, that I already had children just waiting to be born, waiting in the place where all souls can be found until their time comes to join their families. I am as certain of this as anything. In retrospect, I suppose that some people would say I was being selfish in making this choice, as risky as it was, but as it turned out, the multitude of problems I experienced resulting in Williams death came out of a combination of things that were 100% avoidable. First, there was my misappropriated faith in that doctors know everything about everything including all the complexities of my own body. I permitted all the doctors involved in my care to dictate to me what certain symptoms meant even when my instincts screamed at me, otherwise. Although, I truly believe that all were well-meaning and well intentioned, several very poor choices, including recommendations that lead to certain treatments with my care, were made by my "care team" with catastrophic consequences. I was angry and bitter about this for a very long time after, but I have forgiven what has happened and rather decided to search for the lessons and opportunities for growth that lie within the pain of it all instead of remaining in the grips of "why me, why William?". I was equally, if not more, disappointed and angry at myself for essentially ignoring my instincts and allowing things to happen to me and to William that I knew were not right- this is the most difficult part for me to get past and to forgive as I feel partially responsible for him not being here with me today, but self-forgiveness is crucial to ones healing and so I try to permit myself the same latitude knowing that at the time, I thought I was doing the right thing.


From the beginning, there were problems. Just like any newly first time pregnant woman, I had no idea of what to expect. I didn't know what I was going to feel, what I was supposed to feel- whether this ache was normal, or that pain indicated something was wrong- I wasn't sure of the subtle and not so subtle changes my body was and would continuously be going through beyond the obvious- I just didn't know. And so in my ignorance, I began to assume the worst whenever I felt something I had never felt before. I often attributed whatever it was to something bad rather than to something normal and to be expected. This anxiety was fear driven. Even though, I deliberately chose to take this path, at the time, I did not realize that all the voices of uncertainty and disapproval I had been bombarded by over the years on the subject, had taken up residence in my head without my consent and began to negatively effect all that I was feeling, both physically, then emotionally. Complicating and confusing matters even more, was the validation I was receiving that what I was feeling was NOT normal, when to the contrary, it was normal for me, I later found out with my two subsequent pregnancies.


Before I go into the details of what lead up to clearly, the single most painful experience, both physically and emotionally of my entire existence, let me preface the following events by stating that I returned to the University of Washington Medical Center for my obstetric care because I had previously received such outstanding treatment within its walls over the years through the correction of my birth condition. If not for some very special doctors and nurses and cutting edge technology and research, my life would have been, without a doubt, very different from what it has become. The University of Washington is a teaching hospital. In my experience, this fact is both a blessing and a curse all at the same time. As with any teaching hospital, the latest research is being conducted; the newest technologies are being investigated, developed and implemented, some with great success, as with my case. The downside of a receiving care in a teaching hospital is that often times, ones care and treatment is being directly managed by newly charged, inexperienced residents. While an attending physician is theoretically responsible for overseeing the actions of the residents involved, there is much room for important details to go unnoticed, unobserved, unmonitored and unchecked. Further compromising the care I received, was the fact that as semesters ended and a new ones began; as rotations were completed and residents were reassigned elsewhere, I found myself seeing someone new for almost every appointment I had. Because of the lack of continuity in my case, many nuances of my pregnancy were lost in translation as my chart was passed from resident to resident just as often as a football is on Super Bowl Sunday.


My first such pass came merely 6 weeks into my pregnancy. Most women first see their OB between 9-12 weeks into their pregnancies if they do not have any risk factors which would indicate seeing their OB sooner. My first doctor visit came immediately upon confirmation of a positive pregnancy test. By the time I was 6 weeks along, I had already been to the doctor a couple of times which was followed by referrals to other specialists, adding their perspectives and interpretations to the mix, marking the beginning of my proverbial pregnancy kitchen getting increasingly crowded.


Many unfortunate events transpired from my 6th week of pregnancy through the end of my 25th week of pregnancy which is the point at which I began Williams story that Thursday afternoon In January 1999. Without touching on every horrific detail, I will simply paint the broad strokes now. I experienced many aches and pains from the first few weeks. Given my predisposition for increased urinary tract infections, my doctors interpreted my symptoms as deriving from pylonephritis (a kidney infection). Having a kidney infection, even in a non pregnant individual, is a dangerous prospect and never to be treated lightly. My infection(s) was never definitively confirmed, but the treatment I received was based on it being so. I was given very high dosages of very strong antibiotics which continued throughout the pregnancy. The symptoms I was feeling were never alleviated so more drastic measures in the form of more invasive treatments were commenced. In my 14th week of pregnancy, I ruptured my amniotic membranes which meant that I lost all my amniotic fluid. This was directly correlated to being on a high, continuous dosages of antibiotics which can weaken membranes. Having adequate amniotic fluid is critical for a baby to develop normally, specifically their lung development. After this occurred, David and I were referred to a neonatologist which informed us of the grim statistics we were facing. We were told that A) I would most likely have a miscarriage within a few days- never happened. B) that if I made it past the point of fetal viability, the baby had virtually no chance of survival C) If he did survive, he would be severely handicapped. We were advised to terminate at that point.


After many heart to heart discussions with David, we agreed to let nature take its course and hold on to hope that miracles are possible. The good news was that I didn't miscarry as they predicted. Despite the lack of fluid, William continued to grow and do well considering the circumstances. I was put on bed-rest and strictly adhered to it. My fluid began to accumulate once again and it appeared the the rupture had sealed itself. At a subsequent doctor appointment, I was told that I could now go off of bed rest. It was around Christmas time and my grandfather was deteriorating quickly. If there is one moment I could take back, it would be this: I resumed normal activities and pushed myself to do some Christmas shopping. I entered a Target store with my mom and brother and 4 year old step-daughter Samantha. We grabbed a cart. Samantha wanted to sit in the cart. Without thinking, I picked her up- Pop! I felt something pop and I gushed fluid immediately. I had re ruptured in that split second. Why I wasn't home in bed resting, despite the doctors orders, I have asked myself that 100 million times. I will always regret this split second life altering decision for the remainder of my life.


From that point on, the pregnancy deteriorated rapidly. My amniotic fluid never accumulated after that; the rupture never healed. My symptoms became increasingly worse. I was hospitalized several times. I had to have stints put in my ureters which is pure misery and caused me total incontinence. I hemorrhaged. I continued on high doses of antibiotics and narcotic pain medication. I was diagnosed with placenta previa which is where the placenta doesn't move up along the uterine wall as it should and blocks the cervix. This can be very dangerous during vaginal delivery. Even through all of this, my little William stayed put and continued to grow. As my mom and I entered the medical center for what was supposed to be yet another ultrasound to check my fluid levels, I couldn't have imagined in my worst nightmare, the events that were about to transpire.


At the conclusion of the the ultrasound, the tech asked us to wait in the exam room for a few moments. I was informed that the doctor wanted to see me about the results. The ultrasound showed that I was at great risk for hemorrhaging which was very dangerous. She advised me that I needed to be hospitalized immediately for the remainder of my pregnancy. I asked her if I could go home and pack some personal items and settle a few things before returning to the hospital that evening. She begrudgingly agreed, but warned me to get back to hospital as quick as I could.


My mother and I headed to my home. I called David to let him know all that had happened at the doctor appointment. He came home to help me prepare for the imminent hospital stay. Before he was to take me to the hospital, I asked him to run out to one of my favorite restaurants to pick up a "last meal" of sorts. The restaurant was 1/2 block from where we lived, but in the few minutes that he was gone, I began to hemorrhage profusely. My mother called 911 and I was taken to the University of Washington Medical Center by ambulance before David arrived back home. Earlier that day, after learning of the hospitalization, my mom decided that she was going to return home to California to get a few things done so she could return and help David out with Zach and Samantha while I was in the hospital. She left the next morning and was to return on Sunday.


I was admitted and they were able to stop the bleeding, but I had gone into premature labor. I was given high doses of magnesium sulfate which essentially paralyzes involuntary muscles like your uterus. I was barely able to move or speak and unless you've ever been on this medication yourself, its impossible for me to convey how horrible an experience it is. I was on this medication for 1 1/2 days, unable to move, hardly able to speak. On Saturday morning, January 30th, I was lying in bed and I felt strong contractions that were getting worse and more frequent. I was alone at this point. I tried to solicit help, but I couldn't reach out for the nurses button. Finally, a nurse did come in to check on me. I Told her what was going on. Within minutes, I was being wheeled into the operating room for an emergency c-section.


As I slowly woke up from the anesthesia, I remember being pushed by the incubator that William lay in. He was 1 3/4 lbs and 13 inches long. You can't imagine what a baby that size looks like in person, but even though he was hooked up to all these tubes and wires, with bells and whistles going off constantly, I stared at him and all I could see was this absolutely perfect, beautiful little baby boy. I wanted to touch him, kiss him, hold him, stroke his tiny little head and cheek and let him know I was here, that he was going to be okay, but I couldn't. I couldn't do anything, but love him from a distance.


What seemed like an eternity later, the neonatologist entered my room. David was there along with our immediate family members. My mother had not returned to Seattle as of that point. Her flight was scheduled for the following day. The neonatologists informed us that Williams lungs were severely immature and underdeveloped to the point that he could not survive without life support. He would never recover and eventually, would pass away- probably within a few hours. We were given the impossible choice of keeping him on life support until he passed on his own or removing him from all the tubes and wires and holding him for those few minutes he would live. I can't even think of this without tears streaming down my cheeks. David and I mutually decided to remove him from life support. With our immediate family surrounding us, they brought my beautiful baby boy into the room and placed him in my arms. His piercing blue eyes looking into mine. We held him and loved him in those few moments as deeply and as fiercely as we could- trying to transfer all of our love, hopes, dreams, thoughts, feelings straight to his heart, hoping and wishing that in that moment he knew how loved he was and how much he always would be. At some point, he passed away and the rest is quite blurry. You'd think that this was bad enough, but it gets worse.


Later that evening, after all the family had left for the evening, I began having trouble breathing. I remember calling out for help and the rest I don't remember. I had developed sepsis- this is when an infection enters into your blood stream. as a result of the sepsis, I then developed Adult Respiratory Distress Syndrome (ARDS). When I had ruptured my amniotic membranes weeks earlier, an infection began to take hold and got worse over time. The infection is what triggered the pre-term labor. The magnesium sulfate I was given caused my lungs to fill up with fluid. I was in very bad shape. I was immediately intubated (put on a ventilator) and placed into a drug induced coma for several days. They were having a very difficult time determining the source of the massive infection. I wasn't showing any signs of improvement and in fact, was getting worse and was close to death.


The doctors wanted to do a complete hysterectomy as they felt the infection was in my uterus. David pleaded with them to hold off one more day before performing the hysterectomy. Some of you may be wondering why he would do this in a life or death situation. Anyone who knew me then, would know that he was carrying out my wishes and that I would have been beyond devastated if I had woken up to a hysterectomy. The gratitude I feel for him for pushing this issue is immeasurable. He later told me that he knew I would be okay and if he felt anything other than that, he would have approved the surgery. The following day, I began showing improvement and the infection began to clear. I was in a coma and on a ventilator for a total of 9 days. Regaining consciousness took several more days including going through a phenomenon known as ICU Psychosis which is a tale for another time. I also had to go through both physical and occupational therapy for a period of days and still have some issues with long term memory, but all in all, I have made a full recovery.


Once I was well enough for discharge which was 21 days after the date I was initially admitted, I was counseled to never attempt pregnancy again. I spent a lot of time researching what had happened after I went home. I consulted with other doctors and eventually concluded that what had happened to myself and to William was an unfortunate chain of isolated events brought on by the mismanagement of my care which led to incorrect diagnosis' which led to treatment I didn't need which led to everything else, all of which was avoidable. With that knowledge, I set out once again to bring home my waiting babies. I chose a different perinatologist (high risk OB) affiliated with a different medical center. Ben came home first in Feb 2001, then Mackenzie 7 1/2 years later in August 2008. Both pregnancies were high risk, but even so, they both went fairly well and shared nothing in common with my first experience. Both my children are completely healthy with no issues related to my respective pregnancies, whatsoever.

Thanks for taking the time to read his story.

I love you William <3

Thursday, December 9, 2010

Good Night Moon and Other Nightly Rituals


Its finally quiet around here- No television blaring. No squeaking, chirping toys numbing my ears, dulling my senses. No one tugging at my leg, whining for food; no more tantrums to contend with, fights to referee. My kitchen is now closed, ending the nightly arguments over how many bites need to be eaten before being finished with dinner or my relentless monitoring of the refrigerator door that seems to be opened 100 million times everyday. Just silence. Even my husband has gone to bed for the night. The lulling hum of the running dishwasher is my only companion, a very welcome friend after a long, trying day.

My mind is finally free to de-clutter itself- to unload all of the fleeting and not so fleeting thoughts that have entered my mind throughout the course of my day. Most are probably gone for good as I have become much less proficient at remembering things for any length of time unless I have written it down somewhere- No time for even that nowadays with the demands of three young children vying for my attention.

So here I am trying to relax for a few moments before I begin my preparations for tomorrow which will be more of the same as today-

The time in which I am able to carve out for just me, is usually just leftovers, crumbs left behind- all the good stuff already taken. In my exhaustion, I try to remember something that caught my interest at some point earlier in my day, something I wanted to come back to when I had the chance- now here’s my chance, but I no longer recall what it was that I so badly wanted to remember. As it usually happens, it will pop back into my thoughts during some inopportune time, and I’ll put it off yet again and repeat this sequence until it eventually becomes moot.

Being a mom is tough. It is the hardest job there is and having the ability to do it well, consistently, is nearly impossible, in my opinion anyways. If anyone tells you differently, they’re just flat-out lying. Its physically tiring, emotionally draining and ages you in ways that nothing else comes close to. The worrying and fretting, the second guessing and self doubt gets to you and beats you down.

But in all sincerity, I really wouldn’t want it any other way. I’ll fall asleep tonight with a mind still on overdrive causing me to have dreams pertaining to unfinished business and other things that I have left undone ~ I may even wake during the night, separate from waking up with my two year old daughter, my heart racing over something I need to accomplish that I don’t dare forget about. I’ll fall back to sleep for what seems like mere minutes before the chaotic sounds of the day start all over again.

This all must sound like self torture and it is to a degree, but two chubby toddler arms reaching towards me for a hug, or a wet sloppy kiss on the lips and even better, an unsolicited “I love you, mom”, coming from my almost tween son, has a magical way of rejuvenating me from day to day in ways that make it all worthwhile and meaningful in the end.

Bad, Bad Leroy Brown


My son isn't very good about hiding his emotions. I can take one look at his face, and depending on the severity of the burrow of his brow and the angle at which the corners of his mouth are pointed upward or downward, I can usually tell what kind of day he's had.

Yesterday afternoon, I was sitting outside on my front porch and just like any normal weekday afternoon, I saw Ben turning the corner to our street, his hi-top clad feet quickly pedaling his trusty ole Schwinn home from school. He stopped short of his normal drop off place, a small rectangular cement block to the side of our yard, the place where he normally parks his bike when not in use. Instead, today, he made it to edge of our lawn, nearly jumped off his bike, letting it fall in a heap to the ground. As he approached the porch, I began studying his face, looking for an indication of what was obviously wrong.

"How was school?" I asked in my perfunctory, matter of fact mom tone.

No response.

By this time, Ben had made his way past me, opening up the front door to our home and slamming it hard behind him. I took a moment before I followed him inside. There have been many afternoons such as this, moments in which I dread having to search my overwhelmed and ill prepared wee mom brain for some comforting words of wisdom to share that not only comfort him, but at the very least, don't make him feel worse than he already does. The wisdom I need so desperately, never seems to come to me when I want it to, so instead of saying something profound, I simply ask him what is wrong?

By this point, he has thrown his backpack on the floor, and has made his way halfway up the stairs towards his room. As he violently slams his bedroom door shut, I hear him scream, "I hate my life. I hate my school. . . ." and then BAM, the door is shut. His muffled screaming now audibly turns into crying echos reverberating down the stairs.

Now I am truly at a loss. Shall I go to him in his room or shall I give him some space and let him come to me when he is ready to tell me what the matter is? As a parent, I'm never 100% certain on how to proceed with these sorts if things, but I determine that it was best to speak to him immediately.

I gently knock on his bedroom door and ask him if I can come in. No response. I knock again- this time, I am ordered to "go away" but I persist. I have come to understand through experience that Ben needs a whole lot of coaxing before he will let you into his pain. I then decide to enter his room, fully expecting to be shut down, but instead I find him sprawled out on his stomach on the top bunk of his bed, head buried in to his pillow, hands formed into fists, pounding on his pillow, repeatedly. I climb the ladder and lay next him, my right arm propping up my head, my left caressing his hair, rubbing his back lovingly, knowingly.

"This must be bad", I think to myself, my own heart crumbling into a million pieces, my eyes frantically blinking to keep my own tears at bay- flashbacks of my own tormented childhood ensue.

We stayed in this position for quite awhile until the crying subsided a bit and the tightness of his fists loosened up. He finally raised his head revealing his tear stricken face and running nose that he then wiped off with the sleeve of his shirt. His eyes focused intently on his pillow. Even though he wouldn't look at me, I knew he was about to open up and so I continued to stay silent, waiting for him to begin.

He then recalled the days events to me and what it came down to in its most basic form, is a case of being teased and bullied. Even more troubling to me, was Ben's description of how his own teacher precipitated and set him up for what later happened to him after school let out.

The details of why he was being teased are not important. It doesn't matter. Kids will always find something to pick on other kids about. Very few kids escape this kind of horror completely and some, more than others, are effected and haunted by it for a very long time. I fear that Ben may be in the latter category as he has had to endure being a target in one way or another since he entered into the public school system four years ago.

In Ben's case, there are tangible reasons which contribute to his vulnerability. Simple things he could change that would, in all likelihood alleviate some, if not all of the factors that make him a target, but in order to do so, he would be giving up a part of what makes him who he is; his individuality, his way of self expression and changing who he is, is not an acceptable solution to either of us. We talk about this at length. I am proud of my son and the things that are important to him are just as important to me. This however, does not solve the problem.

After we had finished talking it out and Ben made the transformation back into the happy go lucky fourth grader he is, fixing himself an afternoon snack and retiring to our cul de sac to play with the neighborhood kids, I sat and pondered what I needed to do in order to support my child and address the problem. The heaviness of this task weighing on my shoulders, invading my stomach and causing upset that I could not shake. I phoned my husband and talked it over with him. I felt better. I then phoned Ben's father and felt even better, felt stronger and focused enough to call the school to speak with the principal. I dread confrontations in all forms, but the thought of waging war with the school, was definitely not on my list of things I'd like to do.

I sat down at the kitchen table and collected my thoughts. I have a tendency to ramble when I am under stress. To ensure that I got all my points out, I devised a list of all the issues that had culminated since the beginning of the school year, some I have previously called about; all have continued to go unresolved. I dialed the school, heart pounding. . . .

School: "Terra Vista Elementary, Can I help you?"

Me: "Uh, yes- can I please speak with the principal or leave her a message to call me back?"

School: "What is this in regards to?"

Me: "This is in regards to an incident that occurred today with my son and his teacher."

School: "Wouldn't you rather speak to your childs teacher directly about the incident?"

Me: "No, if I had wanted to speak with the teacher, I would have called him directly. The incident involves the teacher and so I wish to speak to the principal about it."

School: "Normally, we encourage parents to try and work issues out with the teacher before the principal gets involved."

Me: "If I felt I could do that, I wouldn't be calling the principal, now would I?"

School: "So let me understand, you want to speak to the principal about an incident that occured today involving your child and his teacher?"

Me: "Yes, that's what I said."

School: "The principal is on leave so you'll need to speak with the assistant principal and she's in a meeting. Would you like me to leave her a message?"

Me: "Uh, duh-yeah (okay didn't really say that). Yes, please. Do you know if she'll be able to call me back today?"

School: "I don't know."

Me: "Can you please mark the message as urgent?

School: "You want me to write that its urgent?"

Me: "Yes, thats what I just said.

School: "Alright. I'll give her the message." Click.


. . . . .I never got a call that day and still haven't as of the time I write this post which sadly, doesn't surprise me a bit. And so I look at the clock and see that its nearly time for Ben to make his way around our street corner. Shortly, I will go outside and wait and hope that as I see him approach and begin my daily exam of his face, I will see a smile and when he heads towards our front door and I ask him how his day was, he'll answer me with a welcome, "fine." as he heads towards the kitchen to raid the fridge.

I will not let this one go. Even though I know I will probably get nowhere in the end, Ben needs to know that I'm on his side, always, no matter what- my voice is his voice, and his, mine. And maybe by just him knowing and feeling that, it will be enough to see him through and alleviate the sting of the schoolyard experience that isn't always kind and that seemingly, some teachers (whether well intentioned or not) seem to forget. . . . .

Monday, October 25, 2010

A Dash of This and a Dash of That


The smells of Autumn are so intoxicating. Whether it be mulled apple cider simmering on the stove, a cooling pumpkin pie tucked away on the window sill or the crackling embers of a wood burning fireplace, these aromas envelop you in a comforting warmth, much like that special blanket, made by your grandmother just for, you as a child.

My maternal grandmother was a fantastic cook, and especially loved to bake. As a young girl, I recall sitting at her kitchen table during our visits, intently watching her transform mounds of flour and sugar, combined with eggs by the dozen, with a dash of this and a dash of that, into a colorful array of decadent cookies, cakes, pies and candy. My sweet tooth begging, for just a taste, a lick of the spoon or even better, the chance to wipe clean, with my finger, the remnants off the mixing bowls that cluttered the kitchen counter top. I would eagerly wait for the timer to buzz, hardly able to contain my delight as she removed sheets and tins from the oven, a beautiful composition of scents, transfusing the air as she arranged them strategically about the kitchen to cool and firm.

With a sparkle in her eye, she would allow me the special privilege of sampling the goodies before they were fully cooled. With a tall glass of milk setting next to me, to cleanse my palate between bites, I would devour the sticky, gooey, goodness, leaving neither a crumb, nor morsel behind on my plate. I felt so special, so loved during these Sundays of baking with my grandma. She passed away when I was just 16 years old and with her, died the recipes that were only recorded and stored in her memory alone.

Years later, my mother and I together, would reminisce about earlier days, she herself recalling the same sort of experience that she had as a girl with both her maternal grandmother and mine. A familial art form, now fragmented along the thread of our lineage. These enduring memories remain eternally intact within my sensorial consciousness, as I am easily transported back to my place at the kitchen table at grandma's house every mark of Autumns commencement, and in my own unique attempt at replicating these same ever-lasting recollections for my own children and eventually, theirs, I find that same comfort, she gave to me and wear it like a blanket warming me to my core.

Friday, October 22, 2010

Cop a Feel. . . You Know You Want To!


Its cancer awareness month and so much attention has been placed on breast cancer. I admire those individuals, both women and men, who have battled this disease and come out of it, stronger and healthy. I empathize with their families who support them, scared for their loved ones, praying for a cure. I am pained for the ones that don't survive and are taken, in many cases, too young, leaving their children and loved ones behind to grieve their loss. I myself, have had two separate breast biopsies over the years and a possible third biopsy coming up in the next few weeks. I found a lump under my right armpit a little over one month ago and have gone to see a variety of doctors seeking opinions. I have been told its anything from an infected cyst, a swollen lymph node caused by an allergy to my deodorant, to a possible tumor related to breast cancer or Hodgkin's Lymphoma. I've been put on antibiotics and prednisone as a treatment and advised to stop using my deodorant, with no improvements at all. The third doctor I saw, finally conceded that I get a mammogram and wrote me the referral.

I just turned 40 this year and the new screening guidelines state that women should not begin routine breast cancer screenings until we reach the age of 50- this recommendation comes from the U.S. Preventative Task Force. The American Cancer Society continues to recommend this type of screening begin at age 40 with baseline data being collected much sooner than that, especially if there is a family history. I guess I am fortunate in a sense, given that I had my first mammogram at the age of 19 because of some fatty tissue connected to my left breast. The second mammogram I had, was during my 2nd pregnancy with Ben, during which time, several lumps formed in both breasts, which can be quite common in pregnancy. I underwent my first biopsy at that time. I remember how scared I was not only because of the actual procedure, but the fear of receiving a possible cancer diagnosis. Ultimately, the biopsy was negative and eventually the lumps disappeared. My second biopsy was done in January of 2007. Again, I found a lump in my right breast, went through the mammogram and ultrasound, which uncovered a few more suspicious masses and finally, the second biopsy with the end result being the same as the first. I was told at that time, that the lumps in my breasts were to due a benign condition known as fibrocystic breast changes, in layman's terms, lumpy breasts caused by fluctuations in hormones.

Since then, I have noticed many lumps that come and go. I admit that I don't engage in formal monthly self breast exams, but I do it often enough to feel confident in noting any changes. The lump that I discovered last month, is somewhat different in texture than the previous ones I have found in my breast tissue itself. Another concern is that I have some discharge in my right nipple which is unnerving in itself as I haven't experienced this symptom before. My mammogram is scheduled for this coming Monday. I fully expect an ultrasound to follow with a recommendation for a biopsy. Keep your fingers and toes crossed for me!

Here are some statistics according to the CDC (August 2010),

"Aside from non-melanoma skin cancer, breast cancer is the most common form of cancer in women. Breast cancer is the number one cause of cancer death in Hispanic women. It is the second most common cause of cancer death in white, black, Asian/Pacific Islander, and American Indian/Alaska Native women.

In 2006 (the most recent year numbers are available)—

  • 191,410 women were diagnosed with breast cancer.*"
  • 40,820 women died from breast cancer.*† "
Additionally, breast cancer rates by age are as follow:

"The risk of getting breast cancer increases with age. The table below shows the percentage of women (how many out of 100) who will get breast cancer over different time periods. The time periods are based on the woman's current age.

For example, go to current age 60. The table shows 3.45% of women who are now 60 years old will get breast cancer sometime during the next 10 years. That is, 3 or 4 out of every 100 women who are 60 years old today will get breast cancer by the age of 70.

Percent of U.S. Women Who Develop Breast Cancer over 10-, 20-, and 30-Year Intervals According to Their Current Age, 2005–2007†
Current Age 10 Years 20 Years 30 Years
30 0.43 1.86 4.13
40 1.45 3.75 6.87
50 2.38 5.60 8.66
60 3.45 6.71 8.65
Although rare, men can be affected by breast cancer as well. According to the CDC,

"Men can get breast cancer. In men, breast cancer can happen at any age, but is most common in men who are between 60 and 70 years old. Male breast cancer is not very common. For every 100 cases of breast cancer, less than 1 is in men.

For men, signs of breast cancer and treatment are almost the same as for women."

Of course breast cancer is just one form of cancer and it is just as important to screen for other types. You can look up the CDC website or the American Cancer Society website for more information regarding recommendations for other types of cancer screenings.

If you're anything like me, the "C" word terrifies you. I have witnessed first hand, how devastating this disease process can be. Sometimes, I feel like not knowing, is the lesser of two evils- but its not. We need to learn to put ourselves at the top of our priority list, if not for ourselves, then for our families. Know your own body. Go to the doctor for regular check-ups. Become an advocate if necessary, to obtain the referrals you feel you need. Don't let a doctor be in charge of your health. Its not their life, its yours and you are the best person to determine what is normal and what is not, in terms of your own body.

My sincerest prayers go out to all of the brave women and men who are currently fighting this battle and my deepest sympathy goes out to those families who have lost a loved one along the way.

Thursday, October 21, 2010

A Halloween Tale

'


We can all list events in our lives that have profoundly changed us. In one moment, we're one way and in the split of a second, we are forever different people. One such event in my life was the time I learned of my mom's cancer diagnosis. As adult children, we stand by and watch our parents age. Many of us have also seen our parents get sick, some recover while some do not. My mother was one of the unfortunate ones. She received a terminal diagnosis and within a couple of months, passed away just a few months shy of her 61st birthday. I was a just few months shy of my 33rd birthday when this happened- much too young for my mom to lose her life and much too young for me to lose my mother. She was an extremely important figure in my world and even though eight years have elapsed since her death, the pain is just as real and just as intense. The following post is part one of this story.

I choose to write about this now because I learned of my mom's terminal diagnosis on Halloween Night 2002. As each Halloween Night approaches since that time, I relive the true horror that is only supposed to happen in B movies, not in real life, especially mine.

Back tracking a bit, I will say that there were signs that something bad was looming. She had been sick on and off for several years, mostly related to bronchial issues. She had been a smoker for 40+ years, but ironically, had finally quit her habit just the year prior to her death after being told she had emphysema.

In the summer of 2002, we spent a few weeks together which was a normal occurrence with us. I was living in Seattle at the time and she and my dad were still living in the same house I grew up in. She made the trip out to see me 2-3 times each year, on the average, spending about a month each time. My family and I, would also make frequent visits to see my folks, usually for holidays and vacation times. During that Summer, my mom had been out to see me and then our entire family enjoyed several days, vacationing in Mexico.

The following month of September, my mom began to feel under the weather. For several weeks she felt as if she had the flu and just couldn't shake it. Her symptoms became increasingly worse until eventually my dad took her to the emergency room after she had an episode in which she experienced severe shortness of breath. She was admitted into the hospital that night and there commenced a week long ordeal of every test one could have. All tests came out negative. On the last day, one of her doctors ordered a lung biopsy. She had already undergone a chest X-ray, just as she had numerous times over the years, which never showed any signs cancer. I knew she was having the biopsy done and throughout the day, I felt an uneasiness that I just couldn't get rid of.

Halloween 2002 fell on a Thursday that year. I had been busy at work and rushed to pick up Ben at his daycare, ran home to feed Zach, Samantha and Ben and then get ready for trick or treating. I hadn't heard from either of my parents that day, but wasn't too concerned as I believed that no news was good news. With the children all dressed in their costumes, we proceeded to go around the neighborhood. David took the older kids out while I took Ben to a few select houses of friends and family, as he was only around 20 months of age at the time. I remember it being so cold that evening and the streets were slick with rain that had fallen earlier that day. The autumn leaves from the tree lined streets formed big piles along our path. Ben, adorned in his dinosaur costume, would attempt to jump into each pile as we walked. Since his costume was so thick and constraining, he kept getting stuck in the piles, unable to stand himself up.

The bitter coldness of the night, drove us home earlier than I had expected. Once home, I removed Ben's costume and put him to bed. David, Zach and Samantha had not yet returned at that point. I then began my nightly ritual of tidying up around the house and preparing for the following morning. As I washed leftover dinner dishes, the phone rang. I saw that the call was coming from the hospital in which my mom was at. I answered the phone, fully expecting my mother to start asking about how our evening of trick or treats went, but instead, the first words that still clearly echo in my mind to this day were, "Are you sitting down?" In that very moment, my heart sank and I knew what she was about to tell me before she uttered anything more. I slumped down into a kitchen chair, collapsing, really. My eyes began welling up with tears. my voice all but vanished. All I could muster was a very meek, "yes".

She began to explain to me that the lung biopsy showed that she had stage 4 lung cancer. It was inoperable since the kind of cancer she had was more of a filmy coating around the lungs rather than an actual tumor. I sat motionless in my chair, unable to speak or move. Panic set over me and I told her I'd have to hang up and call her back later. I dropped the phone and dropped to the floor, sobbing uncontrollably, primal cries originating from the very core of my being.

David and the other kids arrived home at some point during this time. I could barely speak as I tried to relay to him the news I had just been given. After some time had elapsed, something took over my body and by some sheer force of will, I was able to compose myself so that I could phone my mother back as I said I would. I first spoke to my dad who in his pain, was rattling off technical details that neither one of us cared about at that moment. Even though I know that I spoke to my mom after that, I can't remember doing so. I can't remember anything further about that night- its all just a fuzzy blur.

In a little over one week, Halloween will be upon us once again. Much of what happened earlier that fateful night will be repeated just as it has every Halloween since. Rushing to eat dinner, dressing the kids in their costumes, walking the neighborhood for tricks and treats and finally, a quiet moment at the end of it all, in which I remember my mom and think how nice it would be to share with her the days festivities as I had so looked forward to doing that Halloween night of 2002.