Decisions, Decisions, Decisions

Wow, I cannot believe it has been this long since I last posted.  As you will see, I have been writing, but just not posting.  The next passages you will find may be difficult to read.  They were difficult to write.  Maybe that is why I haven't posted as I wrote.  Anyway, again read with tissues.

DEFINING MOMENTS CONTINUED...

November 30, 2005

Wednesday – the mammogram.  That morning, Tim asked if I wanted him to go with me.  Of course I said no.  They NEVER give you the results there & it would be a waste of a sick day for him.   You always have to wait either for the results to be mailed or for your doc to call you.  So, I went in for my mamo, alone and scared to death.   After repeated images, they determined that I needed to have an ultra sound.  This was the worst.  If you have never had a breast ultra sound, you need to realize that this was my first also.  I was sure that the technician would do the procedure then send it to the radiologist and call or send the results.  I was prepared to wait until tomorrow’s appt. with Dr. Smith to find out.

That’s not how it went, though.  The technician let me know that she was sending the test to the radiologist and she would be back in.  Well, in what seemed to be an eternity, they returned.  I say “they” because it was the technician, the nurse, the radiologist AND the counselor.   The minute I saw them all enter the room, I knew what the results were.  At that moment my mind went back to… I have no idea where, but I was having an out of body experience.  The radiologist’s last name was Shaw.  I do remember that.  I also remember the words “90% chance of cancer”, “serious”, and “need to see a surgeon as soon as possible”.  Then the counselor took me to her office where I used the phone to call Tim at work.  I relayed those words to him and he was going to leave immediately to meet me at home.   After that I stayed with the counselor for a while – I have no idea if it was a long while or a short while.  I have no idea what she (or I) said because I was not really there.  My body was there, but all my mind was saying was “How will I tell my girls?”  “How will I tell my girls?” “They’re so little – just 7 and 3” “They just lost their grandma to cancer, how will I tell them their mother has it.” “Maybe I can fall into the other 10% and I won’t have to tell them at all” “This is so not fair!”  “Why me” “Why us?”  At some point I must have walked out of the office because I was in my van driving home.  I had a pile of papers and books in my passenger seat, which I obviously had borrowed from the Women’s Pavilion.

Of all the little pieces of this event, the one thing I have never been able to get out of my mind is the drive home from the mammogram.  Lowell/Larimer road has never been so long.  “This is not happening to me” “This is not real”  “This is what happens to someone else, not to me”  “ I have 2 children who need me as much as I need them”.  Then while I was blasting the music, on came the song Live Like You Were Dying by Tim McGraw.    It was as if God was speaking to me right then, reminding me that no matter what happens we should live each day to its fullest.  I literally cried every word of that song while it played, sobbing and sobbing louder than I was regurgitating the words to the song. 

Thursday, December 1, 2005

You know, from that moment on everything was a total blur.  I remember pieces but the puzzle is not quite complete.  I got up that morning and Tim drove us to see Dr. Smith.  They say he is the best breast cancer surgeon around.  He can even do the biopsy in his office if you are lucky and you will get the official results that day.  I knew in my heart what the results were, but I could still pray to be in that other 10%, right?  I mean someone has to be in it, or it would not be 10% - why not me? 

I remember meeting Dr. Tom Smith.  He was a shorter, balding guy who was very friendly, yet serious, compassionate and very experienced.  He took the biopsy and told us to go ahead to the cafeteria to get a bite to eat or a drink and to come back in an hour to an hour and a half.  We went, neither of us talked much.  I just remember sitting there for the longest hour so far.  When we went back upstairs, our greatest fears were confirmed.  It was definitely cancer.  Now they had to send it out to a lab to get the detailed results.  Dr. Smith’s recommendation was lumpectomy with chemotherapy and radiation.  He said that was the protocol for this situation.  That was the least invasive option and it had proven to be just as effective as a full mastectomy.  I immediately responded with “I want it all gone – I want a full mastectomy I want it all out of me.”  At this point all I cared about was that the cancer, that 2.5 cm. mass of destruction was gone – as well as everything near it.  But, Dr. Smith convinced Tim and I to sleep on it.  We told him we had an appointment in Seattle the next day for a second opinion.  He suggested that we consider even getting a third opinion because we owe it to ourselves to seek the treatment that fits us.  We did get the second opinion, which was quite different than Dr. Smith’s.  Decisions, decisions, decisions…  Everett or Seattle, Dr. Smith in Everett or doctor at Swedish, lumpectomy or mastectomy, chemo or not, radiation or not… and the list goes on.

Reality Strikes

It is now the next weekend.  Time to tell the girls – what I don’t know…how much do we let them in on and how much do we save for later?  How much can a three and six year old digest?  How much do they need to know before we have all the answers?  It still pains me to think of telling them.  We were on Allison’s bed.  We called them both in and they sat against the wall on either side of me.  Allison knew something was up because this was not a normal request – if we talked seriously to them, it was usually individually.  I really have very little recollection of the actual words I chose, I just knew they came out – they came from nowhere.  What I do remember was that they had just lost their grandma a few months before to that “c” word and the very mention of that word, to them meant nothing but death.  Tim and I did our very best to sound upbeat and to stress that there was surgery and treatments that would help me - things that had not been available to their grandma in her situation.  Much of this conversation is a blur to me, but the girls have reminded me that it was the first time our mean cat, “Murphy”, jumped on her bed and snuggled with both the girls.    They both remember this moment vividly – more vivid than I remember.  What I do remember is that Grace, at 3 years old, crawled into my lap and did not want to leave.  Allison held on tightly and we all cried.  They had so many questions – Why did this happen to you, Mommy?  Can you catch cancer from someone?  Why us?  How did it start to grow?  How big is it?  And on and on and on…  Tim was very quiet during this whole time.  It was my responsibility to answer all their questions.  He was barely holding it together.  If he spoke, we both knew he would totally lose it.   Me, I was the opposite.  If I stopped talking I knew my floodgates would open and we had to be strong for the girls to help keep them feeling comforted.

Dr. Smith again – this time we are getting the official diagnosis and information from the pathology.  It was metastatic invasive ductal carcinoma, also known as IDC.  This was not the worst diagnosis given the fact that we already knew it was cancerous.  I mean, there are definitely less common, more difficult to treat types of breast cancers.   The tumor was hormone receptive, which means that it was not caused by hormones, but estrogen makes it grow at a much faster pace.  According to Dr. Smith it had been growing for about 5 – 6 years.  A quick calculation made me assume that it was my pregnancy with Allison that sped up the growth of the cells, or not, but that was my assumption. 

                    Decisions, Decisions, Decisions

Next, treatment options… again, Dr. Smith said the standard treatment was for lumpectomy, chemo, and radiation.  I told Dr. Smith that I wanted a mastectomy.  There was no way I was ever going to go through this again.  I was going to remove the whole thing, not just as a precaution, but as a cleansing procedure, shall we say.  You feel like your body has been invaded with this terrible, destructive mass that won’t stop until it takes over all your healthy cells.  It sends out its little “scouts” in hopes that it can expand to other areas of the breast, lymph nodes, bodily organs, anywhere it can manifest another tumor.  

It makes me think of a Dandelion flower.  It starts as a single seed that grows into this weed that no one wants.  Once its flower is gone it turns into this ball of seeds that blow in the wind and are distributed all over your lawn, in your flower beds - it just goes where it wants, taking over all your good soil that would normally grow your beautiful garden.  What was once a beautiful garden full of flowers becomes an over growth of these weeds.  The longer they grow, the deeper their roots.  Have you ever tried to dig up a Dandelion?  Those roots sometimes seem to go to the center of the earth.  If you leave even a small trace of the roots, it will come back full force.  If you do not control them as soon as possible, they simply take over and your chances of ridding your life of these monopolizing weeds becomes slimmer and slimmer with each new growth.

Dr. Smith, being that amazing person he is, said that he would support me in any decision I make.  I’ll never forget his comment, “I’ve got to protect you for forty more years…” Wow, he thinks there is a chance I will live another 40 years?  That will make me 77, that is not so bad, I could live with that (pun intended).   I’d get to see my girls graduate, marry, have their children, and live the life I was supposed to with my soul mate.  I was never more sure of any decision so far in this process.  If this is as aggressive as he says it, I will just have to be more aggressive.  I WILL be in charge!  I WILL NOT let this thing take over my body, my life, my dreams – I am in charge of my treatment, I am my very best advocate, I will say what stays and what goes.  I am NOT going to settle for “standard treatment”.  My life means more to me than the medical standard.  I am not a statistic, I am Jackie Zarnick, daughter of Butch and Shirley Barrett, sister of Jodi Barrett, wife of Tim Zarnick, and mother of Allison Leigh and Grace Elizabeth Zarnick, and I deserve the best treatment for me – a sort of ITP (individualized treatment plan).  I want a mastectomy and chemo – BRING IT ON!  I am ready for the fight of my life – quite literally.

It was decided.  Then I began to think again…  That takes care of that side, but what if it decides to come back in the other side?   That would put me right back there in Dr. Smith’s office again making a new ITP.   No, not going to happen!  I am in charge, I will say what stays and what goes.  When I called Dr. Smith’s office the next day, I told Donna, his amazing nurse, that I wanted to have a bilateral mastectomy (both sides).  Take it all, get it out, and remove any chance of this happening again (at least in the breast).  Donna spoke with Dr. Smith who said that he would absolutely support me with any decision I made.  He would rework his chart notes to emphasize that with my age and the aggressiveness of the tumor, he recommends we remove both breasts.  He submitted his notes and recommendation to my insurance company and I had to wait to hear from them to make sure it was approved and paid for.  Two days later I got a call at work from my insurance company.  I will never forget the words of the woman on the other end of the phone as she said, “Mrs. Zarnick, I just wanted to call you personally to let you know that your bilateral surgery has been approved.  I know you have so much to deal with right now, and I do not want you to have to think about this approval for one more minute.  I wanted to take one piece of your burden away today.”  I was so impressed and grateful that I cried and sobbed to her on the phone.   I have since learned to hate all insurance companies, but at that moment, there was no better company in the medical world.

Now it was settled.  I will be doing a bilateral mastectomy with chemotherapy.  Next I needed to find an oncologist to help me develop the complete ITP for me.  After much research and three consultations, I chose Dr, Oliver Batson from the Everett Clinic.  He was very easy to talk to.  Although he did quote the “standard procedure” he was very willing to listen to me – I will advocate for myself, I do my research, and I WILL have an active roll in my treatment plan.  One doctor suggested that I have chemo every three weeks because the drugs are so strong that your body needs three weeks to recover from the treatment.  Dr. Batson said that he wanted to treat me more aggressively, he wanted my to receive injections every two weeks.  This would be harder on the body so I would need a shot of Neulasta after each treatment in order to get my blood count high enough for the next injection.  This would also make the treatment period shorter.  This sounded like the best thing to me – more aggressive and shorter time period.  Besides his recommended treatment plan, there was one more detail about Dr. Batson that absolutely sold me on his care.  Dr. Batson had lost his wife a number of years prior to breast cancer.  He had two boys who were young and I felt like he would be able to relate to me on a more personal level.  I felt that he had a very personal reason why he does what he does, making him passionate about his job.  Even more importantly, I knew that to him, I would be a person not a “client” or a number. 

By this point in the process I was so sick of being a number, a statistic, a “client” - not even a patient.   These doctors – in general – see so many patients, with similar stories that it all becomes just part of the job.  However, I wanted so badly to relay to them, that even though they might see this every day, maybe even multiple times a day, this was MY first experience with cancer, and hopefully my last.  Please remember that and treat me like I am the first patient you’ve ever seen.  Explain the details to me, don’t just rattle off your medical terminology and standard procedures.  Take the time with me to make me feel comfortable and understand what you are saying.

As it turned out, Dr. Batson was an excellent choice and to this day I trust him whole-heartedly.  I’d put my life in his hands with confidence and security.  I would partner with him to make sure that we do everything we can do and feel confident in how we do it.  So, we now have a treatment plan – surgery on both sides, and 8 rounds of chemo every two weeks.  

Now it is back to Dr. Smith to discuss reconstruction options.  Do we do reconstruction now or later?  Should I choose implants or TRAM flap procedure?  The TRAM flap procedure is much more invasive.  They take your Trans-reverse Abdominal muscles and each side is put into the breast area to become the new breast.  It involved intense surgical procedures with two surgeries occurring simultaneously in one operating room.  Obviously, by now you have figured out that I opted for the TRAM flap – I mean what other choice did I have , this girl who says just do it? Dr. Smith would perform the mastectomy while at the same time Dr. Brain Wendal would make an incision from hip to hip to insert the muscle after the breast tissue was removed.  The great parts about this plan – 1.  I would go home with a tummy tuck and a boob job all at once.  I got to go in and let Dr. Wendal know how big I wanted my new boobs (within reason considering how large or small my ab muscles were),  2.  The surgeries were to take place at the same time so it really is like having one surgery as far as anesthesia, time lost and recovery time, and 3.  I go in with boobs and I come out with boobs.  Dr. Smith says that he feels this is the best for young women like me because half our recovery depends upon our attitude and outlook.  This way there would not be such a sense of loss and I would still feel “womanly”. 

Okay, there we have it…surgery as soon as possible- bilateral mastectomy and TRAM flap, 4 weeks recovery time to build up strength, 8 rounds of chemo every two weeks.  That feels like a huge load off my shoulders now I just need to worry and pray about following through with the plan itself not about what the plan will be.  Those decisions have been made.

Defining Moments

Thanks so much everyone for the positive comments and encouragement.  Here is the beginning of the next chapter - this chapter is about the first week of diagnosis.  This chapter will require tissues, unfortunately - just a forewarning in case you need a heads up.

Defining Moments

There are times in every person’s life that you just know will be a defining moment.  There have been a few for me in my 43 years.  The day my father died I knew that I would never be the same, nor would my mother or sister.  I knew that I would have to become the support for my mother and take care of my sister.  All of this panned out as expected and even more so to some extent.   Then there is the day I married my husband, my best friend, my soul mate, who has made my life nothing short of a blessing.  The birth of each of my daughters was the end of life as we knew it on many different levels – mostly for the good – bringing an appreciation for every day no matter how hectic or exhausting.

Then there are those moments that you wish were not going to define you, but somehow they still do.  That moment for me was the day I was diagnosed with stage 2 breast cancer.  

It was the first Thanksgiving since Tim’s mom died of cancer.   We celebrated with both of our families.  Being all together was the only option as it was the first major holiday without her.  It was a very difficult time.  However, throughout the weekend Tim & I proceeded to decorate the house for Christmas.  It is good to have children because they give you a reason to continue with life as usual, even in the face of sadness.

The best part of the weekend was when I was determined to put lights up on the highest part of our roof this year.  You see, Tim is afraid of heights and has never quite been able to make it to the highest point.  After watching our pregnant neighbor up on their roof with her husband (also afraid of heights) on their lawn giving her directions.  I figured that if Sarah could do it, so could I.  If Tim was not going to go up then I would show him that it was possible.   I climbed up from the back so that I could just crawl across to the front and hang over to do the job.  Yeah, right!  I got up there and just froze!  I could not move any farther.  I looked at the cul-de-sac behind me and saw another neighbor outside with her boys – “Look –Jackie’s on the roof!”  It took me over 10 minutes to be able to slide back down.  Boy did I show him how it was done!   Since then, our lights go up over the garage and over the first level only and that is enough spirit for us!  Why is this important to my story of breast cancer?  Well, I do have a stubborn streak - which is not always a bad thing as you will see.  Ask anyone who knows me and has tried to tell me “that won’t work”.  I will do everything in my power to make it work, then especially.  Ninety percent of the time I am right and find a way to make it work.  The other ten percent…well, let’s just say I am still improving on my ability to admit when I just cannot make something work.

November 28, 2005

Monday after Thanksgiving, back to school.   I had an appointment for my annual exam after school.  I saw the nurse practitioner, Kelly Dale, since I was not pregnant and had never had any problems.  It was just a routine check up – you know pap and breast exam.   Never a favorite, but no worries.  I mean I was only 37 and was not even supposed to have a mammogram yet.

Then, as Kelly did my breast exam she went over a certain area several times - slower and slower each time.  I had this very detailed ridge underneath the left breast right where the underwire of my bra hit on the inside of the breast.  Kelly felt a lump that she wanted me to have checked right away.  She said it was very suspicious and made many phone calls to get me in for a mammogram as soon as possible.  The normal wait time was 2 weeks, but they got me in on Wednesday.  Kelly made an appointment with Dr. Tom Smith.  She said that he was a new addition to the surgery department and she really liked him.  His specialty is women’s health.  She got me in to see him on Thursday morning. 

This was the start of the longest week of my life.  Some parts are a blur, and some are just as clear as day.  The drive home was only about 5 minutes.  I called my mom and told her what was going on and that I was very scared.  Then I remember sitting in the van in the garage for several minutes talking with Mom and then just sitting there scared to death to walk in the house and have to tell Tim what was happening.  I went in and Tim was in the kitchen cooking dinner.  Thank God the girls were upstairs at that time because I knew I could not face them yet.   He greeted me with his usual – a kiss and “how was your day?”  I said that I had just come from the doctor and explained the details of the past hour +.    We shared a quiet moment with a long, tight hug.   Then we did our best to go on with dinner and the rest of the night without making our fear obvious to the girls.

Later that night I called my friends Pam & Mary.  They both offered their support and were there every step of the way for the next week and beyond.  Then I mustered the courage to call my sister – my very best friend – I have no idea what our conversation was because that, too, was a blur.  Jodi and I share such a special bond, that telling her was just so difficult – I know that I did, but I do not know how.  

Everyone Has a Story - Chapter 1

Everyone Has a Story

Everyone has a story.  Everything has a story.  Every place has a story.  It hit me today as I am traveling from Seattle where I have lived for the past 15 years to New York where I was born and raised.  That would be “upstate New York” where stores are rare, especially those with any kind of personality, and homes and businesses are literally falling down (which is a very sad thing for me to digest) and everyone knows everyone’s business and this can either be significantly to your advantage or obviously to your disadvantage – not New York City where the streets are lined with fashionable and eccentric stores, and where 8.1 million people share the same 305 square miles, and no one cares about your “business” – it is a fend for yourself place where survival of the fittest is the basic motto for many of its inhabitants.  If I had my choice I would not change a thing.  I’d take the simple, safe, small town over the insanity infested City of New York any day, any time.

As I was making my journey through SEA-TAC airport, I notice a number of things that have just seemed to become a part of our everyday life.  There are some people who are simply naturals at making others feel comfortable, and there are others who truly appear to go out of their way to make people feel uncomfortable.  And we all seem to co-habitat throughout the world so closely that the person to the right of you could be miserable and trying their darndest to bring you into their little world of negativity, while the person on your left is making peace by pointing out the bright side and putting a positive spin on any situation.  It’s like a gumball machine – you know it’s going to be a gumball, but you have absolutely no idea what flavor it will be until it is revealed.   As I think about this metaphor, I have come to realize that these gumball machines have red, yellow and green gumballs (with a multitude of shades and colors made from blending those colors).  It seems as those negative, red gumballs are becoming more prevalent than the positive, green ones.  I mean, I’d say that you would get a red gumball probably 3 out of every 5 gumballs drawn.  That means that I have found that about 60% of the people out there are negative or show more negative qualities than positive qualities… a sad, sad realization.

Take for example, the airline worker first.  There were some who were just so very helpful especially given all the newest changes in baggage checking and security check points.  And then there were those who would just say “let’s go - keep this line moving” or “boarding pass…over there” while abruptly pointing to the lane with the fewest people waiting without ever giving you the courtesy of eye contact.  However, it is the passengers just like myself who I am the most concerned with.  I mean we are all traveling, most of us are checking bags, and all of us have to go through security.   But did we all have to be up at the crack of dawn in order to be here by 7 a.m. and were we all up until 2:30 completing our last minute packing, taking care of children and helping a disabled mother pack for her trip only to be awakened by the 4:30 alarm knowing that there was still so much to do including a much needed freshening/wake-up shower?  And I am sure that there was no one else who was dealing with a broken heart from a crying 9 year old who is just so sad that Mommy is leaving her for a week and a twelve year old who is about to have the biggest celebration of her pre-teen life because the biggest thorn in her side, her constant “Nag”, will be gone if only for a week.  Then comes the realization that all of the “necessary” items I had packed will not fit in the suitcase overflowing onto my floor because I HAVE to bring my water pillow – which I had not emptied yet – or the herniated disc in my neck will make my trip miserable.   Now I need a larger suitcase, so I literally dumped all the necessities into the larger suitcase, and to top it all off , realized that I had nothing fast to grab for breakfast so I don’t get nauseous from the handful of medications I popped into my mouth ten minutes ago, all of which caused me to leave 15 minutes later than my normal 15 minutes late, making the ride to the airport just peachy!  There’s my husband (who actually is the love of my life) pointing out the fact that I am ALWAYS LATE and that I ALWAYS pack at the LAST MINUTE.   No, kidding, now tell me something I have not heard before – like EVERYTIME WE GO ANYWHERE!  I know there is no one here who began their day with such splendor as all that -YEAH RIGHT!!!  The sad thing is, this is just a day in the life at the Zarnick house.

In the crazy lives we all live today we seem to forget that everyone has a story.  Let me say that again… EVERYONE HAS A STORY.  From the family with the 15 year old boy engrossed in his iPod, the 4 year old who is crying probably because he, too, was up far too early, the father searching the news and weather on his iPad and the mom working diligently to calm down her 4 year old so as not to disturb other passengers waiting to board the plane, to the disabled woman who is a getting ride in a wheelchair from the nice, also elderly, man who may be needing his own wheelchair service soon. 

As I look around, I notice so many things about so many people, but they are all assumptions based on the stories I have built in my head not really knowing the real truth about them.  We never really know why that slow, cranky, cashier is the only one working on a busy weekday at the most popular magazine stand in the airport – maybe her co-worker was supposed to work but called last minute to say that his wife had been rushed to the hospital for a ruptured appendix, or his daughter had been up all night with a high fever and they were taking her to the E.R., or maybe she is just the slow, cranky lady working solo at the busiest stand at the airport.  Either way, how has your life been enriched by complaining and whining about the fact that she should have more help.  Obviously she does not, so it is what it is – just go with it or go to a different stand.  Ten years from now will you remember this?  No...  But if she told you her story you might.  So no matter where you are and what has frustrated you, remember everyone has a story, everything has a story and every place has a story.  Some stories were not meant to be shared, and some people are not meant to share them.  Not everyone has that courage and gift of being able to share their story with others.  Some people are more private than others and some stories just are no one’s business.

I believe with all my heart that I was meant to tell my story – well at least this one in particular. With a whole lot of courage and a little bit of what others have called my gift, I am going to attempt to share with you a very personal story, one that I have shared with many of the closest people to me.  It all began the Monday after Thanksgiving – November 28, 2005.  This was the day Kelly Dale, the nurse practitioner at the Everett Clinic in Silver Lake, found the 2.5-cm. lump in my left breast…

Welcome to the journey!

Are you ready and willing to help me write my personal memoir? If so I hope you will join me in the process of completing it. I am looking for followers who are interested in reading about my family's journey through breast cancer and so much more. You are invited to comment your thoughts in general and ideas or suggestions for improvement.

This is a very exciting process for me full of every emotion imaginable - well almost :-)- and my hope is to help people who may be going through the same experience, provide some insight from someone who has been there to both survivors and their friends and family,and most importantly to follow through with the task that I truly believe God is asking me to do.

Please be honest yet respectful of the fact that this is a true story and even six years later, although there has been many good things that have come from it, this remains a painful journey to relive. Look for my first excerpt later on today as we begin our journey together laughing, crying, and hopefully inspiring.