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.