Tuesday, June 18, 2013

Fathers

This weekend, in particular [I suppose because it is "father's day"], I found myself reflecting on what it means to be a father. You might be wondering why this is important, afterall this is a blog about myself and my mother and our journey through the big "C". Don't worry, that part is coming.

As I commuted to work one morning I listened to talk radio [something I couldn't stand as a teenager, that I know have a great appreciation for - thank you Uncle Tim], Jeff Kuhner discussed his father in-law and quoted from an article that Jeff's wife had written: Forgettable fathers: Tribute to a wise teacher of life lessons by Grace Vuoto. Comrad Jeff quoted from the article and it resonated with me in many ways. The memior began:

"Fathers are like the pillars of a bridge — no one notices them unless they are not there. They are indispensable, mostly in so far as they selflessly serve others. The role of a father is not glamorous. And his value is easily overlooked, until the day he is no longer there."

The more I thought about Father's Day and how I can teach my son to appreciate the man that is his father, the more I found all the ways I appreciate the man that is his father [but also my husband]. This is a man who drops everything, leaves work in the middle of the day and drives into boston and out of boston in the afternoon [not the best time depending on the commute pattern that day] -- all so that he can retrieve a paper script for a controlled substance that is essential to managing the pain the my mother suffers from having Metastasized Breast Cancer. More importantly this is the kind of man that my son has to look up to, the kind of man who's shoes he cannot wait to walk in.

As Ms. Vuoto says, it is I who everyone associates with caring for my mother [and certainly I do more than any other] but it is he who is the pillar. No one really takes notice of how truly selfless he is, how invaluable he is and how easy it is to overlook the role he plays in all of this. Mothers [and wives] and in my case also daughers, for those are the roles I play, are gifted with the praise and the credit for the insurmountable tasks they take on raising and caring for a family. Mother's day is quite frankly a much bigger day than Father's day -- a fact that Jeff pointed out as he told stories of his father in-law. Rightfully so, Mother's are to be cherished. My gut reaction was "Excuse me Jeff! Mother's day should be a national holiday!" Jeff went on to express that sentiment exactly but he also pointed out that Father's are all too often the unsung hero in the story of the family.

A child without [an incredible] father is truly disadvantaged in this world. However, my husband, who lost his father at a very young age to cancer is truly incredible in his role as a father [and husband]. Interestingly we often hear others refer to a "mother's instinct" yet never a "father's".

The truth is that without my husband [the pillar of our family] I would crumble to pieces. For that and for so many other reasons everyday should be Fathers day.

Because...

He crawls on his hands and knees with his son on his back so he can "ride a horse" through the house.

He tells the best bedtime stories and rarely sticks to the text.

He builds chicken coops and fills waterers and feeders because mommy and lucca are in love with chickens.

He sleeps very little, commutes very far and does everything possible to make ends meet.

He loves us unconditionally.

He believes in us despite our flaws.

He puts himself last, always last and never expresses resentment.

He is here [so many children don't have a father who is present never mind engaged in their child's life].

He coaches T-ball and umpires at the Softball Jamboree [despite the fact that he has no confidence in that role and he is utterly exhausted from all the other roles he plays].

He works tirelessly and at the expense of himself for the betterment of his family.

He instills in his son the values and the characteristics that will leave him a better man.

He is the pillar...he always will be.


Tuesday, May 21, 2013

The Mind

We know that the human brain is more powerful than many of us fully appreciate. After all it can make or break us. I find that I am in a constant battle with the direction of my thoughts. Their either my offense - I am Curtis Martin and I just stiff-armed my way through the NY Jets Defensive Line, running like a madman, cradling that ball like a new born baby and a touch down is inches away, or  I am Tedy Bruschi and despite the fact that I know how to be great, I keep missing tackles (now I know this didn't happen to Tedy - so don't go looking up stats and quoting them to me, just go with the analogy). 

On the days when I am able to focus (especially focus on something positive) I am more at ease, I worry less and I tend to be more optimistic about everything, certainly about mom. Days when the dull climb up the endless mountain of work takes some twists and turns resulting from an unexpected triumph and a sense of accomplishment are great. The touchdowns are endless and we are winning by many (so many we are Bill Belichick and we are criticized for rubbing it in our opponents face). My thoughts turn to the countless days we'll have together, to the hope of a cure (from some other super smart human brain) and the thought of my mother being released from this sentence she's been given.

On the days that I find myself in the suck zone, I worry, I become Tedy without the greatness. It consumes me and it's often irrational. Will the scans confirm our optimism? What is unknown? Why are our days limited? Why her? How can there not be a cure for her? How? 

Today is one of those days. It's crept up on me slowly as the day passed. It hit me smack dab in the middle of a meeting with another Director. It really is quite embarrassing to be meeting professional to professional, planning institutional goals and directions, looking at the big picture and then suddenly be stopped in your tracks, holding your breath and trying not to cry because for no explicable reason your mind is working against you today and worst of all it was a surprise attack. 

You see, I know that we all have it inside us to be great, I truly believe that. I myself have had moments of greatness, however, we rarely give ourselves credit for the greatness. Yet, we take our faults ten fold - we hold the weight of the world on our shoulders and wonder why we feel so deflated. It's not rational, I know this...but the mind is a powerful thing and it takes a lot to stave off the worries of losing your mom to Cancer


A side note: The NE Patriots are the ONLY team. Curtis and Tedy rank among my favorite players and while I love NY, I will never love the Jets. 

Tuesday, May 14, 2013

My Medical Choice

If there's one thing I stick to now, it's regular doctors visits. Each and every time that visit comes around, which seems like at least a few times a year between physicals and follow ups, my doctor asks "How's mom?" and "Have you asked her to have the genetic blood testing for BRCA yet?"

I have not asked her to have the tests yet because I am not sure I want to know. She usually reminds me that mom's insurance will likely cover it and I have nothing to lose. BUT, don't I? I have maintained that I would not take the radical step of preventative double mastectomy and therefore reasoned that knowing can only add to my worries and stress. She has encouraged me to have mom tested first, since if she isn't a carrier I need not be tested and only if she is a carrier would I need to decide to be tested or not. I have maintained my stay the course and be vigilant with breast exams stand.

Today my dear friend Hanna shared this opinion piece by Angelina Jolie (my all time favorite actress and one of my favorite people in general). It's, good....it's thoughtful and it has me questioning my stand. First, I am not Angelina Jolie and I do not have the luxuries she has...but we are both women with a child or children that are counting on us and a mom who has fought or is fighting to live through cancer.

Life is tough and so is My Medical Choice - which I have realized that I have not yet made.


Click here for Angelina's Article:My Medical Choice

Thursday, March 28, 2013

For the Love of Chickens!

Life is tough. Very tough. It is also filled with many wonderful things. One of those is CHICKENS! We started our first backyard flock in the Spring of 2012, inspired by friends. We decided to keep it small...it has since filled our lives and we've expanded (a lot). For the full story visit our website and blog at Favara Flocks. It's just getting started so do follow us there and come back for more soon. 

I know some of you are probably thinking, what the heck is this lady talking about chickens for? Isn't this a cancer blog? Well yes it is...but it's also just about the life. Cancer, my mom's, is just part of that life. A huge part, don't get me wrong. On a good day is it all consuming. But, I am learning that there are these little things in life that I or my family or all of us together enjoy so much, that for a few seconds there is some reprieve from our fears and we find joy. 

Chickens are the greatest little things. They have personalities like you wouldn't believe, until you've spent time with them. We've not named any of ours because we respect the fact that they are also food or provide food and life is delicate. We lost our beautiful dog, Sasha Girl, a sweet English Bull Mastiff this summer and it was very hard on the entire family. Sometimes I think deep down it is more self preservation to refrain from naming them than anything else. Although, we've become quite attached to our chickens, so much so we might as well get on with it and name them. 

Today we added an additional 26 baby chicks to our existing flock of 7 full grown chickens and 4 other chicks that are now 3.5 weeks old. I spent the better part of the afternoon worrying about chicks sitting in a box at the Post Office, having arrived 2 full days early while I was 30 minutes away at work. Turns out they were fine, and I spent a few hours worrying about something different today. Coming home with my little guy and spending a few moments getting the chicks settled and watching them was the JOY. 

There are many wonderful things about raising chickens: 

  • Although a great responsibility they are far less work than say having a dog. 
  • They are quite funny. 
  • Fun to watch.
  • Delicious, healthy, local (in my yard) eggs that are more nutritious than store bought and free of all things unnatural. 
  • Meat if you are someone who can do that, I can't and so I won't. 
  • Great learning experience for children. 
  • Wonderful distractions from the very serious nature of life. 
  • Did I mention they eat bugs (especially ticks) and make great fertilizer (organic) for the garden.
  • You feel like your doing something important, something that is worth doing. 
Having a mom with Cancer makes you suddenly aware or more aware and concerned with what you consume. So, we raise chickens (and someday soon, honey bees and goats and maybe a horse), compost, plant gardens and do our best to make good choices. 

Most of all we have the chickens, for the love of chickens! I know, I know sound like a crazy bird lady but that is not at all the case. You'll have to take my word on it. 

Sunday, March 24, 2013

Embracing My Anger through Advocacy! Part II

We three (and two Paramedics) left the Emergency (Hell) Room at Anna Jaques Hospital in Newburyport, Massachusetts with little answers and lots of fear. The paramedics seemed a bit standoffish to me, but given their job and my hindsight, I imagine it's not very easy to detach yourself from someone in an emergency each and every day over and over. The driver was stone faced and she meant business! I could tell she was not in the least bit comfortable that not only one but two additional passengers were riding along with her patient. The other guy, he was more socially awkward than anything and in the end he was quite nice. They seemed an unlikely team. 

Mom was strapped into the gurney and tucked into the bus (as they call an ambulance, not sure why - it's clearly more like a van than a bus) like a sardine. This did not help her nerves and made it so she was positioned in a way that I could not even make eye contact to reassure her. We arrived at the Ambulance Entrance after a rather bumpy ride (Thank You Taxachusetts!) and she was rolled into triage. It was not at all what I expected. In my mind I imagined that since she already spent the day in another ER and she was being transferred that it would be smooth. That the doctor had called and shared all the details of why she was being transferred and that they would be ready for her. 

The ambulance triage area was filled with gurneys of other people who had been transferred or "rushed" to the ER at Beth Israel Deaconess Medical Center in Boston. This was not the place I imagined landing when arriving at a state of the art medical facility in Boston, Massachusetts.There was no introduction to the triage nurse, no explanation of what would happen next or what was expected of me while there. There was just nothing but awkward standing and waiting, trying to reassure mom that Boston was the best place for her. 

We stood with mom while she waited in the Gurney Line (yes I am serious, it was a line of Gurneys) to have her final vitals recorded by the Paramedics and be signed over to the Triage Nurses. We received no instructions so we stood and we stood...it was really quite odd given that we seemed very much out of place but we were not leaving her for anything so we stood. The driver, I wish I remembered her name now, actually opened up now that her patient was safely delivered and come to find out she is a student where I work. Maybe we'll cross paths again someday and I can thank her. 

The paramedics were instructed to park mom in the only remaining spot, right in front of the automatic doors in the dead of winter, where she would wait for a room in the ER. There were many Gurneys parked in this small open area, car accident victims, gun shot victims, drunks, cancer patients and the list goes on. 

After standing with her for a few hours and taking her to the ladies room once (because at least the nurse here was clear that she could actually get there with the wheelchair safely and for her comfort, him being male and all, allowed me into the back of the ER to assist her). 

My father arrived from a roofing job site nearby. We saw him before he saw us and my sister left to get to him and help him get to us. That did not go so well. We had no idea about protocol or what the other side of triage even looked liked since we had no explanations upon arrival. He got to a not so helpful woman in the waiting room who basically told him he was not going to get back to see mom. Anyone who knows my dad knows that he does not deal well with conflict. He nearly lost it, so he left and my sister followed him out and he was sitting in his truck, outside the ER, which would not fit in the Parking Garage. Can this get any worse...oh yes it can.

Thankfully, Bryndon(my sister Lisa's other half) drove Dad to the hospital and a police officer said he could 'live' park in the fire lane outside the ER. For one, that's where Dad sat for quite a while and for two, it was going to be a very long night. 

My sister tried to return to my mother and I and she was then intercepted by security and told that only one person could be back with my mother (I was already back there) and therefor how the hell could she tell me what happend with dad and that there was now this rule no one had mentioned to us if they would not let her do so. 

Well, my sister does not like to be told no. So she marched outside and around the building to the Ambulance Entrance, which just so happened to be inches from where my mother still lay on the gurney at what must have been an hour and a half to two hours at this point. She began to break the news to us(with security on her heals), which was very distressing to my mother and myself (mom wanted to see Dad and I needed to be there as her advocate because Dad just doesn't have that in him). After calming down the security guard and convincing him I can be trusted to follow protocol now that it has been shared with me I formulate my plan. So, my sister stays with Mom and I go looking for Dad in his truck. 

It took a lot of convincing to get him to walk back through those doors and go see mom. In the end he decided to do it after a period of time. Slowly the rest of my family arrived and waited in the waiting area. Before long we were told that no longer could anyone stay with mom, there were just too many patients on gurneys in triage. The waiting room was agony, not just because my mother was alone and scared and sick but also because it was filled with 20-30 people waiting to be seen in the ER for the Flu! Something none of us could afford to get because we couldn't risk passing it to mom. 

The hours ticked on and late in the evening my mother was moved from the triage area to the ER Rooms. Except there were no rooms available for her so she was assigned a square in a hallway and again was allowed to have one person with her at a time. By now I have established a rapport with the nasty women at the ER desk and I can come and go somewhat freely because she finally believes I will follow her rules. 

My husband arrives just after dark and he brings food. My sister and I are starved, we've not eaten since breakfast. He is a godsend. It becomes evident that although the doctors have begun to visit mom there is little to no hope that she will be fully evaluated and admitted before the day ends. So I begin the process of shuffling everyone in and out to see and say goodnight to mom and send them all home. 

My father, my husband and I remain. Dad and I take turns sitting with mom and keeping my husband company in the waiting area which is slowly emptying. The hours tick on and on. Eventually the decision is made to admit mom, but that surgery would not be recommended. This is a relief and disconcerting at the same time. Why did that ER doctor at AJH tell my mother she needed major reconstructive surgery and cause her so much distress? Incompetence?  Fear? I will never know. The only explanation I get is that local doctors are not always familiar with what cancer does to bones and protocol for treating it, they just see deterioration that needs to be fixed. 

I can't help but think, shouldn't all doctors, especially ER doctors be up on this stuff? At least generally? Should he have been able to sit down for five minutes and explain to mom what he saw, what that means in a normal person but that cancer patients are treated entirely different and that he is sending her to Boston where she will get to see the best in the cancer field and receive the best treatment. I wonder at times, if this is America and we have the best care in the world, how awful it must be everywhere else when a doctor here can't take 5 minutes to explain something to a patient in the least scary way possible. 

It was nearly 3 am before mom would begin the process of being transported to a room and admitted to the hospital...

To be continued.


Friday, March 22, 2013

Measuring Up

Lately I feel like I have missed the mark. No one warns you, truly warns you what it means to be a mother and a wife - while being a good daughter and a strong leader at work. It's suddenly occurred to me why there are some who say women can't, you can't be the best mom and have a career where you are also at your best. 

I always resented the idea that I couldn't do that, of course I could. This is America, women are equal and I can do anything I want to do. Right? Well, with age comes wisdom. The feminist in me still believes that I can and should do anything my heart desires. That women should continue to fight to remain equal in this world of men. We've come far in many ways, and in others we must continue to fight. 

Wisdom has taught me one thing though, it's important to be honest with yourself. It's okay to want many things, pursue them and fight for the right to do this. I would encourage any child (especially female) to do just that, to never let anyone tell them they can't follow a dream, or many, no matter what they are. However, I have discovered that if I am honest with myself: I can't be the best mom, wife and daughter and the best, strong leader in my career at the same time. 

I try very hard to balance, home and work, but the truth is that I drop balls often. It is a juggling act that is anything but flawless. Lately, I feel as though I am falling short in every aspect of life. My house is dirty and dinners are short and very last minute. I have missed multiple deadlines at work and feel as though I am constantly playing catch-up. Then there are all the things that I know I should have done to keep things organized and be on top of things for mom that I have not done. 

I feel as thought I am in my suck zone and I can't get out. I try to remember to focus on my strengths, and just keep moving forward but sometimes that is so hard. I am starting to think that in life being a mom is like being a magician and hoping that no one discovers your bag of tricks and sees just how vulnerable you are. 

Monday, March 11, 2013

Birthday Boy!

My little guy turned four on Saturday. Boy time really does fly. You become a parent and it's like suddenly your stuck on Fast Forward, except there is no pause button. The fact is that unless your waiting and hoping for a cancer treatment (or any other treatment of a debilitating or life threatening disease) to start working [which feels agonizingly slow I might add, even when you receive hopeful bits of news] life moves much too fast. Only in those most desperate of moments does it feel like a slow motion movie in which the right combination of medicine is just out of reach. 

For the most part, we move through life and we face really tough things like moms with cancer and that pause button would come in so handy. Why is that? It would be so great if we could just slow down a bit. 

We can't though. Life is like that, it's either agonizingly slow or mostly too fast. Like when your son turns 4 and it's bittersweet because he's 4 and you've lost another year of his innocent childhood but he is growing up to be quite the little man and Grammy was there to see it. 

It's really difficult not to think of all the good memories as memories, memories that remind you that at some point in the future the memories we make won't include Grammy (my mom). That's really tough to swallow. At the end of a really great day in which your son has cuddled with his Grammy, they've had dinner together, you've made cake,everyone ate cake, he opened gifts and posed for precious, loving, smiling pictures it is tough to stay positive when for just one second you let yourself consider the fact that you really no longer have any clue just how many of these moments are left. 

Saturday was one of the best days we've had in the last three months. It's been a long three months and I know that it is important to stop grieving for what we will all lose, what she will lose and focus on the present, being present and making precious memories. I have to coach myself to do it. Enjoying a special time no longer comes natural to me. Constantly thinking and considering what will come next (snapshot of just some of my regular thoughts):

What I need to do to help mom...
What I can do to help mom...
What I need to plan...
What my family needs from me...
What I can give my family...
What my mom's pain level is at any given moment...
Is she managing her pain or skipping the meds...
Did she remember her meds today...
Was it a good day for her... 
Did she have a restful sleep...
Is she lonely today...
Did anyone else visit her or ask how she was...
Did I break any promises today that I never intended to break...
How will I keep this up...
When will I ever master my mind and actually sleep well... 

That is my new normal. 

Being positive is key, and focus, great focus. I know this to be true. So on Saturday I focused on my son, and his cake...it was a great cake if I do say so. I am no cake boss but it was fun. I focused on taking pictures of him with Grammy. 



Grammy's Smile


Lucca's Fire Boat Cake

We got him his first fish tank, just a 20 gallon but it's a great tank and he loves it. On Sunday we picked up fish, 4 Neon Tetras, 2 Fancy Tail Guppies (one male and one female, mommy's pick, because after all life is a miracle), 2 Silver Mollies (one male and one female, again mommy's pick) and finally a Creamsicle Molly and a Black Molly (both males, Lucca's pick - typical boy). After one hour the Neon Tetra's didn't make it (life is also fragile). They've since been replaced by 4 Glo Tetra's and an additional 2 Comets (goldfish). This smile on his face when he stares at those fish, or feeds them, just a spot - never more than a spot...is so precious. 


"When you feed a fish, never feed him a lot, so much and no more, never more than a spot or something will happen! You never know what." 


             A Fish Out of Water - By Helen Palmer Geisel         

Friday's optimism, was followed by Saturday's precious memories and for a few days we all did our best to focus and be in the moment and not in that place of fear that is so easy to go to. 

Happy Birthday my child. 
You are so loved. 



Friday, March 8, 2013

Optimism

This New Englander did not start the day very optimistically. First and foremost, SNOW, more SNOW! I awoke to 4-6 inches on the ground and still more coming down. Since I have Friday's off with my little guy you might be thinking, that's great, Snow Angels and Hot Chocolate are in order. Well any other day you would be right, and boy oh boy did I wish that was the plan for today.

With lots of snow, no childcare and two appointments in Boston for mom, I had to put my big girl pants on and stop whining. Did I mention that despite being a New Englander and despite being able to drive better than most in the snow, I hate it. I truly hate it. One should not have to drive in treacherous weather with a child and a parent through streets and down highways that were not plowed - or plowed but not maintained beyond the initial swipe.

This is New England right? So, is it too much to expect that our towns and states have this down to somewhat of a science. Afterall this storm was not a surprise. Wait, who am I kidding, elected officials communicating effectively and leading is kind of far fetched, never mind relying on something as exact as science.

So the journey begins with mom reminding me to breath intermittently as we make our way down the highway surrounded by people you might think would have some experience driving in snow. Afterall this is New England, right? Mom was great though...no ooohs or ahhhs or sudden movements which is her typical "back seat driving" as they say. She was a trooper.

On a positive note, we arrived a little over an hour early for the appointment. That's where I learned for the first time that kids are not allowed in the Hematology/Oncology department. Which, to be honest, makes total sense to me, but in the moment completely unravels me. Afterall, I am trying so hard to be everything to everyone and this is the last thing I need to hear today. So out to the hall I go with my son and my bag of goodies, leaving mom behind to sit and wait alone.

A good mom always has a bag of goodies. This bag of goodies made for a very well behaved son who consequently became known as the "door man" for opening the door for each and every patient, family member, doctor and nurse that came through. And, he's cute. Yes, I am bragging but one must brag about their son, it's in the job description that comes with the title "Mom".

Despite being early, the doctor is late. That's always the way isn't it. However, they are so kind and thorough it's really very difficult to be angry once your in the room with them chatting. And then the news arrives that we've been waiting for! Mom has had just one week of Xeloda, and now she is finishing up her off week. Things are OPTIMISTIC!

Did the Doctor just say the "O" word. Is that a smile on my face? On mom's face? 

Indeed she did, followed  by her CBC was GOOD, her counts are slightly up and her kidney functions are good and her LD-something good too! All optimistic...there's that word again!!! Doc went on to say these are all signs that Xeloda may be a good fit for mom's disease make up.

That means we continue, a week on Chemo, a week off and switch to monthly visits that coincide with her Zomeda injections. Although we have another follow up in two weeks with the radiation oncologist followed  by ortho-oncologist a few days later...maybe spring will have sprung by our next meeting with mom's oncology team on April 8th...which is a good day for great things, it's the day her first grandchild was born, my God Son, JT. Follow up scans Will be 4 months it from February 22 (chemo start date).

Oh and speaking of birthdays,  little Love who was ever the big boy today turns 4 tomorrow. I ask blessed. Night All, keep the prayers and well wishes coming.

Saturday, February 23, 2013

Embracing My Anger through Advocacy! PART I

It's been quite sometime since I have tried share some if my thoughts on this journey. In fact I've intentionally refrained. It's rather difficult not  to end up in one of two places: Fear & Anger.

Since I last posted much has transpired. On Thursday, January 17, early in the morning I was awoken by a call: mom was in severe pain, the kind that she felt when she fractured her ankle a few years back (unrelated to cancer). It was her hip and she could not walk. She cried into the phone, her voice full of fear..."I just want you to take me to the emergency room, something is really wrong."


She is so strong and her pain tolerance is abnormally high, so hearing her like that was gut wrenching. She refused to allow me to call an ambulance. Having her live a little over 20 minutes away is a constant worry for me. I wish she would come and live with me and my family. I am her primary caregiver and it is a challenge to do that well, raise my own family and work with any level of success and sanity. Where she resides is one of the few things within her control and I have to respect her wishes. Cancer has taken so much from her that I can't take another thing from her and so I just keep trying as hard as I can to make it work and push through the days without dropping too many balls as they say.

It took 20 - 30 minutes for me to get her out of the house and into the car with the help of my sister. Mom was shaking and crying.  All I could think was that I knew better than to attempt this myself, I should have called an ambulance. Instead, I respected her wishes which I knew in my heart were born of fear and now they were being replaced by my own fears that if I let her fall, if I wasn't strong enough, one mistake would cost her more.

I could not have gotten her out of the house alone and I am thankful that my sister stayed home from work that day and helped. When we arrived at Anna Jaques Hospital the wait was not very long. We went in after just a few minutes and initially everyone is very kind. That was the only quick thing about the day. We were there for nearly six hours sitting in a room with mom waiting for answers. 

First there is the nurse. Then there is the doctor who asks everything the nurse just did and then one has to wonder what's the point if they don't talk to each other? X-rays are ordered and you wait. Wait a little more. Then they finally take her for the x-ray. We return to the room and wait. Meanwhile the pain hasn't changed and she is more afraid than ever, all three of us are. The doctor comes in (just inside the door) and says it should be about 30 minutes for the results but no inquires into how mom is. They don't come back for nearly an hour or at least that is when the doctor arrives to tell us what he sees. After all it's not like she can go anywhere right? Nothing, nothing significant. However, just to be sure now she'll have a CT Scan. So we wait some more. Finally we go over for the CT and back and then repeat the waiting process all over again. The doctor returns again, nearly an hour later with the news. The news is brief and again he barely walks into the room. There is a significant fracture in her hip and she will need major reconstructive surgery which is beyond the scope of their capability. She'll need to be sent to Boston. Beth Israel Deaconess Medical Center is where she'll go and he's off again placing the order for her ambulance.

Although the ER is almost empty it is just about lunch time and no one seems to care that mom is still lying in a bed afraid for what this means. Nearly forty minutes goes by while we just wait in a room. All the while no one is checking in with us or on my mom. In fact the nurse seems like she can't be bothered and is annoyed with the fact that we've interrupted her day. I can see the fear building behind my mother's eyes. Knowing what is wrong does not offer comfort because major surgery is very scary and to hear that its so bad she must go to Boston and nothing more (because the Dr. offered no explanation and did not stay to answer any questions) sets her mind spinning about every worst case scenario she can think of. It's extremely difficult to keep your cool when you observe this happening to the person who gave you life and inside you have all the same fears and then some because you feel like your failing her when you can't even get the incompetent nurse to understand she needs to use the bathroom!

Each and every time I go out to ask a question or let her know my mother needs to use the bathroom she is just plain rude, because why should I be interrupting whatever she is doing at that desk for a patient in excruciating pain who needs to pee but should not be walking on her leg? Although no one bothered to take the time to tell us what we should do (now that we know there is a fracture for certain) if she needed to use the bathroom, never mind that I had already been taking her to and from the bathroom myself all day because again why would the nurse bother. 

It's then when the nurse will not even look at me when she responds that I realize I am on my own. As I walk away from her without an answer on whether my mother can use the ladies room or not. I am her advocate. She can't advocate for herself because it takes everything she has to make it through each day and fight this damn cancer and there is no one else who will do it. Advocating for someone, especially a loved one is hard. It is one of the hardest things one may do in life. It is taxing and frustrating and puts you in a place where you constantly feel like your failing because no matter how hard you fight there is another fight coming and the one you love is literally depending on you to succeed so that they can live. Live longer, live happier, live with less pain and have hope. Talk about the weight of the world. 

Well to preserve my mother's dignity I won't share what transpired with the nasty nurse and the ladies room. In the end mom waited the entire ambulance ride to Boston and then some. I began the agonizing process of calling my dad, my husband, my other sisters and breaking the news to them.

My sister and I rode with mom in the ambulance to Boston we arrived shortly after 3:30 PM. We rolled into the back side of the triage where there were many others waiting on gurneys by the ambulance doors until ER rooms would become available and my mother was "parked" by the automatic door in the middle of winter to wait. ER's are HELL, PURE HELL.....



That's it for now...this is a long, long story. Part II is coming and then III. I did not realize how difficult it might be to write this out until I started. I would like my readers to note that while my post is full of anger and sarcasm, please realize that I have a deep appreciation for nurses and doctors and all healthcare workers, especially in the ER. I understand just what they face each and every day and I know all too well what a good nurse or doctor is because eventually we found some really good ones as I suspect most are. But this journey started off with some really awful ones and that is a shame. 

Another note...while I am my mother's primary caregiver and advocate I should say that my sister did not leave my side that day and in the moments when I fell apart where mom could not see, she held me and she encouraged me. She was wonderful. 

Sunday, January 13, 2013

Roller Coasters

This journey is teaching me many things about myself and my family, both good and not so good. For one thing I am learning that every time I start to think I can't handle anymore, I just move forward and somehow I have handled it. Admittedly not always in the most graceful way but handled just the same. As for the family part well what can I say some are wonderful and some really can't handle this, while others are just plain selfish or in denial. I have also learned that I must find a way to let go of my anger towards those that fall short...I am not there yet!

This is yet another blog post that has been in draft form since January 1st. On December 31st mom and I went to the dreaded Radiation Oncologist appointment. Mom had been off to a rough start with the Tamoxifen. The pain had been so intense that she went from working Full-time (and adamantly insisting the diagnosis wouldn't change that) to no longer working or driving within three days of starting the medicine. At one point she could barely walk. She was mortified, but more than that she had let the fear creep in. I could see it in  her eyes.

As we went in to see the Doctor she noted that it had been a good week and allot of the pain had subsided. What that really means is the Percocet was not needed so much as Ibuprofen and my mother's tolerance for living in constant pain. The doctor was truly wonderful, one of the few angels on earth I suppose. She took the time to explain allot of what the primary Oncologist left out (flat out avoided). She went on to say that the risks of radiation at this time far out weighed the benefits and that since there was no spine pain and the other pain was manageable she would not be needed, for now. She was very hopeful that these were indicators that the Tamoxifen was doing it' s job.

We left feeling hopeful too. Mom was having a good week so far. She was not struggling to walk and was optimistic about driving again and soon. Those weeks are rare and t to be treasured.


Then my car broke down and we paid way too much for a dealer to diagnosis the problem only to move it to my brother in-laws who has his own shop.

Then my husband' s grandmother returned to the hospital for the second time in one week at age 92. A third trip would follow in the next week...a trip for my son proceeded it (allergic reaction, he' s fine now) and a trip for myself proceeded that (chest pain, not my heart - my inability to manage stress).

We've postponed the New Year's tradition of Christmas with the in-laws three times now.

This is right when I start to think there is no way I will make it through...

Back to mom...

She spent that night at our house on New Year's Day, excited that she would be well enough to care for my son (almost 4) the next day while I went to work. Mom has had him every Wednesday since I went back to work from maternity leave. She has given us and especially him a gift that is priceless. He was only in pre-school 3 part time days a week until recently. Unfortunately by the end of the day it was evident to me that this is just too much for her. I had anticipated this and made plans to add a day to pre-school. I know this is hard for them both but I can't have her making our needs her priority over surviving.

It's very difficult to look in her eyes and see that she is being robbed of this time with him. So, we have agreed from time to time he'll stay home to be with her if it makes sense and we'll visit her on Tuesday night's instead. He asks everyday if it's a Grammy day...how do you explain this to a 4 year old. Honesty? For the most part that's the route I travel but the "C" word...that is not a reality I want him to face so young.

This is when I start to unravel inside...I hide it well until I am home. Then the panic sets in. I don't know how I have made it through the week, my heart is racing, the tears come with no warning and I completely lose it. My doctor have me anxiety meds to try and help me from getting to this point...I haven't taken any. I didn't even fill the script - she knew I wouldn't.

You see the pain hadn't subsided for long. Mom is back to needing the Percocet and has pain in her spine. The fear is in her eyes again. And it's the one random thought that leads me to that look in her eyes or the 7 that she consistently marks on the calendar for her pain level (her 7 is unbearable for most).

A few more days pass. I bury myself in my work during the day and check in with mom a few times each day. I make the necessary calls to set-up her disability and I listen to her and try not to be weak in front of her. I remind myself...

She is the one with Cancer...
I will lose her...
But she is the one living this agony.

Somehow the week I thought I couldn't survive is gone and we both made it through.

Why not pink?

For sometime now I have had misgivings about the Pink Ribbon Campaign and this post has been in draft form since December.I thought I should take the time to explain my thoughts on pink. To be honest, pink, along with blue have always been my favorite colors. Pink actually looks great on me and my mom too. I suppose it's our fair complexion that we share that pairs just perfectly with pink.

When mom was first diagnosed with Breast Cancer a little more than four years ago we embraced that pink symbol of hope, courage and surviving. It was a symbol I was proud of. Who wouldn't be proud to be sitting alongside a courageous woman fighting her own battle and winning against Breast Cancer. You see when the diagnosis is anything but Stage IV there is great hope. There's allot of , "well if she's going to have cancer it's one of the better ones to have" or "they've come along way and Breast Cancer is treatable". There's not allot of discussion about the very real fact the 30% of women with Breast cancer metastasize approximately 36 months from the start of the initial treatment.

Well it's been about 36 months and mom didn't beat the odds this time. I can't help feeling that pink and pink ribbons are just a reminder of all the ways we are failing 40,000 women annually. It was exciting the first time I saw the NFL wearing pink. I was touched to think that they would change their uniforms to support Breast Cancer Research and awareness. Anyone who follows football knows the rules regarding uniforms are strict, look how often they scrutinized Bill Belichick for his fashion faux pas until they realized there was something there to capitalize on. Hence the Bill Belichick clothing line! And come to think of it the pink uniforms in support of Breast Cancer awareness got off to a slow start right around the time that the "pink hat phenomenon" was full speed ahead. For those of you unfamiliar there are true long time female sports fans and then there are the "pink hats", fans because it's fashionable to be one. Don't get me wrong, I have a few pink hats -- they are way cuter, but I am not a "pink hat". The NFL has done a fabulous job capitalizing on the movement and then some.

I realize now that the percentage of profits related to anything pink or pink ribbon far outweigh the percentage of money donated to research and even that far outweighs the actual money spent on research after paying for countless expenses and frivolous salaries to the individuals that run these foundations. Now that sounds dramatic right? Well to that I say do some real research. Don't just look at what goes to the research and the really important work like helping those living with cancer. Look at those salaries and ask yourself could you or someone you know do that job well for a more reasonable salary? I bet your answer is yes. You see its one thing for the CEO of a multi-billion dollar for profit company who built it from nothing to set her salary at 6+ figures but it's another thing entirely for that same position in a non-profit foundation to be so high...it's non profit people...you can be paid well without becoming a member of the 1%! I say that as a conservative at heart so don't get all political on me.

That's really just the tip of the ice burg.

In truth there are a few foundations, especially local ones that truly are non profit and do their jobs very well. There are I imagine some larger foundations who also do better than others. Don't get me wrong, I believe that without this campaign and the true intentions behind it we would not have come so far . As they say, we have come far. I give credit where credit is due.

But you see, pink is no longer my favorite color because it is a reminder of something that no longer includes mom, of conversations that are never had about the reality of Metastatic Breast Cancer outside of that private meeting when you get the news and the few wonderful bloggers such as But, Doctor I Hate Pink and other support groups.

It's all a bit disheartening really. And until you join this club that no one speaks of...I think it's really hard to understand this point of view. I hope this club membership dwindles and those of you who don't quite understand why I feel this never do. I hope that someday the research that is done and done well eliminates this club altogether. But forgive me if I support you despite my dislike of pink.