The Battle Plans are Laid.......

12/10/12--Monday--Day 58--Not Such a Positive Day
It's been a really tough day.  We left Safford at noon to drive to the Cancer Center in Mesa to finally meet my oncologist, Dr. Cianfrocca.  Our appointment was at 4 and, just like when we met Dr. Bryum, we didn't leave until 6:15.  The doctors at the MD Anderson Cancer Center are very, very caring and excellent at what they do.  Patients are given as much time as needed to ask any questions and are never felt rushed or put aside while being there.  It is a great place to be, even though today's appointment was extremely tough.

First we saw Melissa from Dr. Byrum's team who looked at my incisions to make sure everything was healing properly.  She removed the Sterile Strips under my arm because they were starting to lift.  The incision was longer than Greg or I anticipated, about the length of my pointer finger, but it looked like it was healing nicely.  She put on new strips, but left the incision on my breast alone since those strips still were holding up well.  While she worked, she explained more about Thursday's Tumor Board.  There would be dozens of doctors there to review my case.  All of the oncologists, all of the breast surgeons, and all of the radiologist as well as all of the radiology oncologists including both radiologist from my biopsy and seed localization.  Later, Dr. Cianfrocca (Dr. C.) explained the board would decide whether or not I will have another surgery to remove additional lymph nodes and the radiology oncologists will have a big part in that decision.  There is a new study, the Z11 Study, for which I am a candidate.  So far, results of the study indicate that removing additional lymph nodes in patients like me has no significant effect on survival rates.  If I am accepted as part of the Z11 study, the good--no additional surgeries and no chance of getting lymphedema.  The bad--no way of knowing if the other lymph nodes have cancer, unless tumors show up on the body scan, so there will be no way to exactly "stage" the cancer.  The argument--whether or not the other lymph nodes have or don't have cancer has no impact on the treatment.  The treatment is the same no matter what, so why remove the lymph nodes.  That answer we will have after Thursday's meeting.

After Melissa finished, I met Dr. C.'s assistant, Lisa, followed by Adrianne, my nurse navigator.   I finally felt surrounded by people on my team who were looking out for me.

Soon I met Dr. C, an impressive woman who had thoroughly reviewed my case.  As anticipated, we received all of the ugly details of what I have and what's ahead.  In summary:

• I will have chemotherapy because of the size of my tumor (4 cm), because it was a grade 3 tumor (very mutated cancer cells), and because there was an additional tumor on my lymph node (1 cm).  These three factors mean right now there is a 50% or higher chance that there are cancer cells in my blood and other places in my body.  Therefore, chemotherapy is required to kill any cancer cells there may be.  After chemo, my chances of additional cancer cells go down by 1/3 and after the radiation and the 5-year pill, my chances will reduce down to about 15%.  
• We are waiting on one additional test called a FISH which will tell us if I am HER2 positive.  When they originally stained my tumor, a score of one means HER2 negative, a three means positive, a two is unsure and requires additional staining to determine.  Of course, I am was a two.  That test will be back on Monday.  That result determines the order of the chemo--which chemo drugs are administered first--as well as if there is some additional medication required after chemo.
• The chemotherapy I will receive has two parts.  Which part will come first will be determined based on the results of the FISH test from above.  If I am HER2 negative, part one of the chemo is a drug called Taxol which is given every week for 3 months (12 doses).  Part two will be 5FU, Adriamycin and Cytoxan give every three weeks for three months (4 doses).  If I am HER2 positive,  the order will change.  Part one will be Adriamycin and Cytoxan only (no 5FU) once every three weeks for the for the first 3 months (4 doses), and then Taxol and Herceptin every week for 3 month (12 doses).  This means 3 months of once a week doses and 3 months of once every 3 weeks doses.  And, if I am HER2 positive, after these first 6 months, I will have to continue with Herceptin once every three weeks for the entire year, so for an additional 6 months.
• After the first six months, the chemotherapy is done.  Then I will start my radiation.  Even if I am HER2 positive, I can still do my radiation while I am continuing the Herceptin.  This means, most likely, August and September I will be relocating to Phoenix for six weeks of daily radiation.  After the radiation, I will begin taking the 5-year pill, probably Tamoxifen.  If a test shows I'm already in menopause right now (which we doubt) I would take Arinidex instead.  Recent studies are suggesting taking these pills for ten years instead of just five is showing better results so the famous 5-year pill may become a 10-year pill.

Well, how's that for learning today!  Some of you may wonder why I would bother sharing all of these boring, confusing, medical jargon details.  Remember, this is my blog, my history, my journal, and my feelings all piled into one.  If you are feeling a little overwhelmed reading the medical details above, you are walking right beside me on this journey.  This is way more than I ever wanted to know, and none of it is fun.

So what is next?

• On Thursday Dr. Byrum will call with the decision from the Tumor Board.  I will know if there will be additional surgery required to remove more lymph nodes.
• Monday we will go back over to get a PET scan which will show if I have other tumors already metastasized somewhere else in my body.  I will also have blood work and an echocardiogram.  That is because one of the drugs from above is hard on your heart so they need to see what shape my heart is in now so they can monitor it as we go.
• Wednesday we will go back over and I will have a port put in.  A port is something the size of a couple of quarters which they put under my skin.  The port has tubes that get inserted into some of my main arteries under my clavicle bone under my collar bone area.  This is a place where they do all the needle work from drawing blood to depositing chemo drugs.  I guess that will keep me from looking like an addict with dozens of needle marks, but it will also keep me safe.  It seems that if you put some of the chemo drugs in a regular vein, the drug can bleed through and go under the skin causing a burn effect on the skin.  By having a port and going directly in the artery, this chance is reduced.
• I will meet with Dr. C on Wednesday and she will have a chemotherapy plan based on whether I am HER2 positive or not.
• I need to determine when to start the chemotherapy.  Logically, I could / should start my chemo the week after the port, which would be the week between Christmas and New Years.  Dr. C said if I want to wait to start the week of the new year, that would be fine too.
• I will lose my hair by the third week of the weekly treatment, or by the 2nd dose (4-5 weeks) of the every three weeks treatment.  Basically, either way I will be bald by the end of January.
• Eye lashes and eye brows do not grow constantly like hair.  Instead, they grow in growth phases.  If I am not in the growth phase when I get my chemotherapy, I won't lose my lashes and brows.  If I am in a growth phase, I will lost them.  There is no telling ahead of time.

So that's it.  Those are all the ugly details of this disease so far.  As I sat in the exam room, I listened intently, paraphrased to make sure I understood the different items, and while I felt like I was dying inside.  Despite feeling like I was going to break down at any second,  I stayed calm and collected as Dr. C confidently and thoroughly delivered every discouraging detail.  Her direct approach to the facts gave me reassurance in her skill and knowledge.  It also made obvious the seriousness of this diagnosis.  This is a treatment to save my life, and without it, I have much less than a 50% chance of survival.  There were no decisions to make that really mattered.  There were no choices.  This is serious.  This is my life.  This is no longer just a breast cancer thing that I could go through surgery, radiation and a pill and be done.  Because of the density of my cancer, the size of the tumor, and the fact that it has spread beyond my breast, there is one treatment option--hit it with everything they have, and reduce the chance that it will metastasize somewhere else in my body later.

We walked out of the room passed the tall windows of the mall-like waiting area hallway.  It was dark outside and I was nauseous and shaky.  I stopped and sat down for a few minutes to catch my breath.  Tears began rolling down my cheeks as everything that had happened over the last two hours began to sink in.  On the way out, I turned left before the elevator to peek into the Hope Boutique where they sold wigs, bras, scarfs, etc.  As I peered through the gate of the closed shop, I felt numb.  We walked down the stairs to the bottom floor.  I kept thinking back to my first day at the Cancer Center when Dale, the volunteer, took me to the second floor for my first appointment with Dr. Byrum.  I remember him saying, "The third floor in our infusion floor," and me asking what infusion was, and him saying, "That's were people who need chemotherapy receive their treatments."  I never believed I would see the third floor.

We sat in the parking lot in silence for the longest time.  We had packed an overnight bag in hopes of relaxing a bit after the appointment and going to see a movie then spending the night at Preston's.  Neither of us could speak.  There was no way we could stay.  "I think we should go home," finally broke the silence.  I agreed.  My phone had been vibrating for the last hour--all texts and calls from those who love me, care for me, and are supporting me through this.  They were eager to know what happened and how they could help.  I couldn't bare to talk to anyone, so I sent a quick update text with basic information.  Even typing the words hurt.  The more I thought about it, the sicker I felt.  By Superior, I felt like vomiting; just past the tunnel, I did.  I had Greg quickly pull over and I was literally sick to my stomach from all of this.  After vomiting, I sobbed as Greg held me while the rest of the world rushed through the mountain pass.  I didn't feel sorry for myself; I just felt sick--completely full of disgust, dislike, disappointment, and distraught.  By the time we made it to Globe, I knew I had to call my dad.  It wasn't fair to him to send it in a text.  I tried to not sound as devastated as I felt inside.  When we got home, I sat at the table staring at the paper where Dr. C had methodically written notes as she explained each item to us.  It was all the same as it had been three hours earlier.  Nothing had changed.  I hadn't missed anything.  The reality followed me home as we ended this not so positive day.