Surgery Scheduled. Farewell 2012, Hello 2013........

12/31/12--Monday--Day 79--I WILL SURVIVE!

As 2012 comes to a close, I could say it has been the absolute worst year of my 48 year life, but instead, I think I will say it has been a year of absolute strength.  I have learned that you never know how strong you are until being strong is the only choice you have.

I realize just how strong I have been when I reflect back on 2012.  It all started in April when a simple toe surgery went bad leading to spinal injections in Tucson every other day and months of physical therapy.  But I made it.  I limped along as we managed Brooklyn's senior prom, all of her graduation activities, moving Preston to a new apartment, and a trip to Orlando.  July brought the horrific tragedy of unexpectedly losing my mother, my very best friend.  I thought it was more than I could survive, but I stood strong by her side holding her while the first fireworks shot into the sky as her spirit rose up to heaven.  How lucky I was to be there by her and say good-bye.  Though I wanted to just stay in Cottonwood with my dad and hide away from the world, I couldn't stay there forever.   Still clouded in sorrow as July ended, we drove Brookie thousands of miles away to college and faced being empty-nesters for the first time.  But it was the right place for Brooklyn and it would be good for us.  Trying to celebrate our new time together as a couple, we ventured to New York in October only to find ourselves face-to-face with Hurricane Sandy and the first news from the doctor that the lump in my breast would need a biopsy.  But we escaped Sandy, returned home, and faced the biopsy head-on.   November brought the first shocking word of cancer,  but at least it was only DCIS, a "simple procedure" and "the best kind of breast cancer to have."  We were lucky that the lumpectomy would be after Thanksgiving, but shocked once again when the surgery resulted in a large 4 centimeter invasive mass rather than simple DCIS.  In December, we were happy to discover that removing over 9 centimeters of tissues during the lumpectomy resulted in clear margins, meaning the surgeon removed all of the cancer, but sad to learn one of the lymph nodes she took showed an additional, unexpected 1 centimeter tumor.  We were lucky to have a team of doctors concerned enough to ordered a PET scan.  Just a week before Christmas the results of the scan showed more cancer in an inner mammary lymph node and a large 10 centimeter tumor in my abdomen the size and shape of a baby's head or small basketball.   Now, weeks later, a lumpectomy later, and many tests and scans later, we end this year knowing I have invasive breast cancer, a large tumor in my abdomen, and tumors in my lymph nodes.  But we also end this year knowing just how strong we have been as we have survived wave after wave of shocking and sometimes devastating news.

As the new year begins, we face a second surgery to remove the large abdominal tumor and perform a full hysterectomy as well as a full axillary node dissection.  The surgery is finally scheduled for Monday, January 7th at 1:00 PM.  This Thursday and Friday will be riddled with pre-op appointments with my breast oncologist surgeon, my gynecology oncologist surgeon, my hematologist, and my lymphedema specialist.  We pray the large tumor in my abdomen is not cancerous.

January will be a month of recovery and February will bring the first wave of six months of chemotherapy.  But I will survive and I am so fortunate that my cancer is curable. August and September will bring relocating to Mesa for six weeks of daily radiation but as October 2013 arrives, breast cancer awareness month, I should be cancer free and cured just in time to celebrate my 49th birthday.

I know this new year, and every day in it will bring new hope.  I also know that tough times don't last, but tough people do, and I am definitely a tough person.  As every day of 2013 brings a new beginning, I will take a deep breath and start again, and God will always be with me.  So farewell 2012.  You brought new tragedies which I made into learning experiences.  You gave me mountains to climb, all of which I conquered.  You hammered me with lemons from which I made lemonade.   You didn't know I had an army of friends and family and we banned together to conquer you!  I emerge from you a better, stronger, move appreciative and loving person.  Hello 2013.  Whether you prove to be friend or foe, together with my army of support, I WILL SURVIVE!

Un-compartmentalizing My Cancer

12/28/12--Friday--Day 76--Normal Life Goes On

So I decided to take a break from cancer for the Christmas season--you know, just turn it off and pretend it's not there.  After being in such a bad mood the night of my last visit to the Cancer Center, I just wanted to put my cancer away for awhile.  I updated my blog on Thursday morning before heading to work, which I had to do in order to process information.  This blog has been my lifesaver.  It helps me record what happens as it happens, before I forget it or confuse it; it  helps me share the same information with everyone without having to retell the story a million times; it helps me sleep by providing a place to "off load" all of this stuff running in my head; and it helps me know I am not alone in this battle.

I headed into the office late and called my team together once I got there.  Once again, everything had changed.  Blogging that morning had helped me get back into a better mood about the situation so I was upbeat and tried to be humorous as we talked.  A full hysterectomy meant I was going to be out of the office much longer than I had anticipated, so this was the last day all of us might be together, depending on when they scheduled my surgery.  We laid out plans to move forward with all of the project without me being there.

Later that day, I looked at the CD of my scan.  Several of my team members were there because this was completely fascinating technology.  As technologists, it is amazing to see how technology in other fields is used and this was incredible.  They all watched as slice by slice, picture by picture, we ventured down through my body.  First the inner mammary node cancer showed up in bright yellow, then further down in my abdomen the big, black, glowing moon filled the screen.  The image is the size of a baby's head.  It is black, but yellow shadows glow around it, almost like looking at an eclipse of the sun.  Like me, they too were shocked by the size.  Seeing the images just puts a whole different perspective on the situation.

I finished that day and only had a half day on Friday.  The scheduler called on Friday afternoon to scheduled more appointments.  She tried to schedule for January 4th with two doctors, but didn't have any orders for Dr. Byrum.   Then she was confused as to whether it was for pre-op appointments or surgery, both which would require Dr. Byrum, so she said she would call me back, but she never did.

So that was it.  I was done  We were off for two weeks to focus on what really matters this time of year, family, love and the birth of Jesus Christ.  We had company coming that night and would have a house full for the weekend.  I was looking forward to family, friends, fun and no cancer.  I would put my cancer away for the holidays.

Saturday night we made a big meal.  As we were cleaning up, I started to feel nauseous so I sat down for a bit and visited with my dad who had joined us for the holidays.   On Sunday, we headed to Phoenix for the Cardinals game.  We grabbed a quick bite to eat, then walked around the tailgating parties for a bit before heading into the stadium.  I began to feel super sick to my stomach again.  I tried to go to the bathroom, but that wasn't it.  I sat in the stadium looking pale and feeling nauseous once again.  This was the third time since Wednesday night I felt sick.  Surely I wasn't feeling this way because of the cancer or the tumor.   Cancer was not going to invade my normal life until after the surgery.   It took about 20 minutes of laying my head on Greg's shoulder and closing my eyes before I recovered.  Since then, over the last week, I have realized the nausea seems to follow eating.  Maybe the tumor is now pushing on something.  Maybe the cancer was breaking out of the compartment in which I place it and coming into my everyday life.  Maybe it is all in my mind.  Somehow, it seems to be connected to eating, but not all eating.  Who knows.  I just wanted to keep ignoring it for now but at the same time, I started realizing I can't.

Before Christmas, I put cancer out of my mind as much as possible, but since Christmas has been over, it has crept back in.  The more I go through this, the more I realize I can't keep my cancer compartmentalized like I thought I could.  It has become more serious and more complex than it was supposed to be.  When I started, it was supposed to be a simple, standard lumpectomy followed by the inconvenience of radiation and then it would be over.  I would be done by February.  I asked people not to post on my Facebook wall because I didn't want cancer to consume my life.  I wanted to keep my normal life and just have cancer be something I dealt with on the side when I had to.  This would be done by February and it wasn't a big deal.  I now am realizing my cancer is more "serious cancer" and it can't be compartmentalized.  I can't put it on a shelf and just take it off when I choose to deal with it.  It IS going to consume my life for the next nine months as least, as I am truly fighting a battle for my life.  So I guess it's time to UN-compartmentalize my cancer.  It's time to accept that IT now will control a big portion of my life.  I am going to post on Facebook that this is my new life for now--hopefully temporarily, but it will consume me for awhile.  I figure I better since bald pictures will probably end up showing up there.

As I face reality, knowing the inner mammary node that is cancerous cannot be removed is scary--really scary.  Up until now, each step we've discussed has involved cutting something out then doing chemo to make sure all the cells are gone as well.  Now, suddenly, something can't be cut out.  I know my cancer is still curable--that means everything and has to be my focus, but I am scared.  When I first saw Dr. Byrum, she said it's better to have breast cancer on the right because it is away from my heart when they do radiation.  Now what?  The inner mammary node is on the left, right by my heart.  What does that mean? A new questions to put on my doctor list.

My friend Paula who also is being treated at the Cancer Center went to visit a new specialist in Tucson.  Her cancer is way more serious than mine, but suddenly I have begun to wonder if I should get a second opinion too.  Then I wonder why.  The hysterectomy only makes sense since there is no real reason to save anything.  The axillary node dissection only makes sense since there are at least two confirmed lymph nodes with cancer.  I guess the only real questions is why they can't remove the inner mammary node instead of trying to shrink it with chemo.  But, when you see the picture of it's location, that pretty much makes sense too.  Maybe I am hoping to find someone who will tell me what I want to hear--this is no big deal--but I know I won't.

The genetic testing lab called yesterday.  My insurance had a genetic testig exclusion so they won't pay for the genetic test at all, even if my tummy tumor comes out cancerous.  So unless I want to pay $3,700, I won't know if I carry the BRCA gene or if I should have a double mastectomy or not.  It's pretty silly since it can cost the insurance company two completely separate surgeries, but that's bureaucracy for you.  April is going to write a letter of medical necessity, but I doubt it will pass or be reviewed in time to make the decision for my next surgery.

With that, we are again in a waiting period.   I called my nurse navigator yesterday.  All of the doctors are out this week so we really won't know anything until next Wednesday or Thursday.  That puts my surgery in the second week of January, at the earliest, which is fine.  Cancer may be a big part of my life, but I have definitely learned to play the waiting game and until then, normal life goes on.

Lining Up The Soldiers........

12/19/12--Wednesday--Day 67--A Very Long Day of Doctors

The kids were going to be home from college, so Tuesday night I wrapped Christmas presents so I didn't have to worry once they were here.  It took me until 1:30 am, which proved to be not so smart the night before a long day of doctors.  After 3 three hours of sleep, our day began at 4 am so we could be on the road by 5.  Tuesday afternoon I received a call from the Cancer Center letting me know they scheduled me to see a gynecologist surgeon at 9, prior to my 10 and 11 o'clock appointments, but he wanted labs done before he saw me so I needed to be there by 8. When we woke, the wind was truly howling worse than I've heard in years and our drive was once again layered in rain.

When we arrived at 8 am, we started in the lab as instructed.  Bryon, the very first guy to take my blood on our first visit there called me back.  He remembered me and I updated him that my visits would now be more frequent. "I'm sorry," he sympathized " but it will be nice to see you."  He knows my friend, Paula, who is also treated there and we chatted about her and I being childhood friends and now both having cancer while he drew five tubes of blood.

Up on the second floor, we checked in and I learned the gynecology surgeon's name is Dr. Schlumbrecht, but the ladies call him Dr. Matt.  They said he is super nice and that I'll like him a lot.  I was quickly taken back and given a gown to change into since now a pelvic exam would be required.  His nurse and his PA came in to collect my history, which included much more personal questions because of the area of the body with which we were now dealing.  That made me a little uncomfortable, but I knew it was necessary.  Interestingly, the PA knew Safford because she is married to a Cluff (Mike Cluff).  That was a nice connection to have.  The doctor came in shortly, did the pelvic exam, and said he would meet us in the conference room after I dressed.

We walked across the hall to a room with a computer and a couple of couches where we would spend the next three hours.  He started by pulling up the CT/PET scan.  It was amazing technology.  The image was of my body laying horizontally on my back.  We were looking straight on from my head and moving through the length of my body with my back on the bottom of the image and my chest on the top.  As we moved through my body, first we saw the position of the inner mammary node in the center front of my chest which contained cancer, indicated by a bright yellow spot on the top of my body image.  It didn't look so small.  As he moved down the inside of my body past my waist, what seemed like a huge round black ball appeared.  "What's that," a question I had asked several times already as we moved throughout my body image.  "That's the mass," he answered.  OH MY GOSH.  I never imaged it was that large.  Greg and I both had the same look of disbelief in our eyes.  It looked like a small basketball in my belly.  I guess when they told me it was 10 cm, I related it to the size of my iPhone in length, but I never imagined the depth.  The depth and height equal the length.  It is about 10 cm by 9 cm ball.  It is a shockingly large size when looked at on a horizontal view inside my body next to all my other parts.  Seeing it from the top instead of straight on gives the perspective of how much depth of your body it takes up.  You are looking at a view with the front of your body being on top and the back of your body being on bottom and then you see this 10 cm mass taking up a significant amount of room in the depth of your body.  He changed views and show us the mass from the front.  It was equally large, but somewhat less impressive because then you are comparing it to the length of your body.  It was still enough to dwarf what we had been shown at in my breast before surgery.

As we talked, Dr. Schlumbrecht said he will do a full hysterectomy.  "Even if it's not cancerous?" I questioned.  "Yes.  With your situation, leaving your uterus, fallopian tubes, and ovaries would just be vessels for future cancer growth," he said emphatically.  He explained that I was close to menopause and leaving those part in would have no advantage, but would create a huge risk so he wanted to take it all out when he removed the mass.  He was the first male doctor on my team and though he was very knowledgable, he talked too fast, used too many medical terms without explaining them, and I was having a hard time keeping up with what he was saying.  It would still be laparoscopic surgery with several different incisions, could be up to five.  They would still send the mass off to pathology while I was on the table because if it was cancerous, he would also take my pelvic lymph nodes as well.  "Great, more lymph nodes gone," I kidded.  "Where are those and what effect could that have?"  He explained that they were above each leg and that if those have to be taken, there is a risk of lymphedema in my legs, just like in the arm.

Wow, I became completely overwhelmed.  First, I don't want to have a hysterectomy.  Six years ago when I started to experience heavy bleeding, I had a endometrial ablation, a simple outpatient procedure that basically burns the uterus lining and stops your periods but lets you continue to ovulate.  That addressed the bleeding problem and kept me from having a hysterectomy.  That had worked perfectly.  Now a hysterectomy for sure?  I was scared and I guess mad.  He explained recovery would be four to six weeks.  "How quickly could I go back to work?" I asked.  "It will be several weeks," he explained.  Despite my attempts to convince him I had an sit-down job and if I felt okay could I return sooner, he insisted I could not go back to work for a minimum of two weeks, then we would see.  I felt even worse.  A huge mass--possibly cancerous, a for-sure hysterectomy, a for-sure at least two weeks away from work--my normal life.  While I was grateful this was all "fixable" and "curable"cancer and mass issues, I was definitely overwhelmed and angry.  If this was cancer, Dr. Schlumbrecht explained, he would be in charge of the first part of my chemo rather than Dr. C.  His dosage would be every three weeks for six treatments, or 18 weeks, or four and a half months, however you want to look at it.  That would replace one of Dr. C's three month chemo regiments, but I would probably still have to do the other three months with Dr. C.

The doctor tried to reassure us by saying he did believed the mass probably wouldn't be cancerous and would be benign.  I asked him why they called it a complex mass if it isn't necessarily cancerous, and he explained that it was because it appeared to be made up of two different types of tissue, but it was very consistant, which was good.  Also, during the pelvic exam, the mass was mobile and not fixed, which was also good, according to him.  If it is cancerous, which he continued to say he didn't think it was, it could be breast cancer that metastasized in my pelvic area, or it could be ovarian cancer, which he seriously doubted it was.  "How will you get that big of a mass out laparoscopically?"  He said they should be able to collapse it by removing all the liquid from it first, and then it would slip out.  If by some rare chance there was cancer spread beyond the mass in other areas, which he didn't anticipate, they would have to do a full incision and open me up.  He kept reassuring me that he didn't think this was cancer, just a large mass.  He then explained the the CT/PET scan does not provide the view he needs to see more details of the mass so he wanted me to have a vaginal ultrasound which he thought he could arrange for the afternoon if we could stay.  We told him we could and would rather stay than have to make an extra trip, so now I had a 1 o'clock appointment at the imaging center.

I tried to take comfort in the fact that he didn't think it was cancer, but my focus remained on the hysterectomy.  I don't know why, but that really affected me.  He said he and Dr. Byrum were working to schedule the surgery for the first week in January and then left the room.  The other doctors would be coming to us in that same conference room.

We didn't have any time to regroup before the genetic counselor, April, came in.  She was our 10 o'clock appointment and we were already 30 minutes behind schedule.  She was very nice and explained much of what was tough to understand from Dr. Schlumbrecht.  She took a very detailed family history, which I had researched thanks to my Aunt Mary and Aunt Rita the night before.  Then she explained the results and the role of genetic testing.  She was the lady with all of the statistics, which was actually very helpful.  She said when talking with each of my now three doctors, when they look at me alone, they are all very highly concerned because I possibly met two of the three indicators for being a carrier of the BRCA gene.    First, I was diagnosed under 50, and second, I could possibly have both breast and ovarian cancer.  The BRCA gene predisposes a person to getting cancer.  A regular woman's chances of getting breast cancer are 12% and ovarian cancer are 1%, which is why Dr. Schlumbrecht believes I probably don't have ovarian cancer.  It is very rare.  However, if I am a BRCA gene carrier, the chances for breast cancer increase to 85% and ovarian to 27%-45%.  In addition, the chance for breast cancer to reoccur after treatment is between 2%-10% in most women.  In a BRCA gene carrier, the chance for reoccurring cancer increases to 40%-60%.  Now things were starting to make sense.  That was why doing the hysterectomy made even more sense to him.

April explained that when looking at me in my family history, me being a BRCA carrier now made less sense.  If I carried the BRCA gene, most likely another relative somewhere would have had breast or ovarian cancer.  We did realized that almost every female on both sides of my family had had hysterectomies sometime in their forties or even earlier, my mom's was in her twenties, so ovarian cancer may not have had a chance to surface.  However, one of my relatives would most likely have had breast cancer, and since none had, insurance would not pay for the $3,500 test.  If they find the mass to have cancer once it is removed in two weeks, insurance will pay for the test because my chances of being a carrier significantly increase again.  Basically, the doctors were thinking if I qualified for the genetic test BEFORE the surgery and I carried the gene, they could do the axillary node dissection, the hysterectomy, and a double mastectomy all in the same surgery.  Holy cow!  Ahhh NO, I thought to myself.  I was barely handling the thought of the hysterectomy right now.  There was no way I was ready to process the thought of a double mastectomy, being a gene carrier, all of that at the same time right now.  It didn't matter.  I didn't qualify so that was a good sign.

April left and I started going back over the family history and realized we had left something out.  There was someone who had died from breast cancer in my family--my dad's Aunt Bula.  We contacted April and she came back in.  I figured since it would be my great aunt, it wouldn't qualify, but it did.  She explained she wanted to do the blood work for the test and send it off.  It would still be insurance's decision as to whether they would pay to have the test run, but they would make their decision within two weeks because the blood would be waiting and have to be processed within that window.  She would order more lab work after I met with Dr. C.

She left and Dr. C, my oncologist entered the room.  Since the abdominal mass had surfaced from the CT/PET scan, she was on hold a little bit as the surgeons still had more work to do.  She explained that she wouldn't see me again until ten days after my surgery.  She also said that if I have ovarian cancer, it trumps breast cancer and that is why Dr. Schlumbrecht would do his chemo treatments first.  Breast chemo treatment doesn't cover ovarian cancer, but ovarian chemo covers part of breast cancer.  So if the mass turned out to be cancerous, he would run my chemo first for four and a half months, then she would do the last three months.  I asked her the question I have been waiting to ask. "On a scale of 1-10, how serious is my case?"  She explained that she can't think of numbers that way.  Instead, she evaluates cases on how curable they are.  She assured me my case was curable.  "But how serious is the cancer I have?" I probed.  I guess I still felt this was just something lots of people go though and it really wasn't a huge deal but I was beginning to question that.  I explained that we had talked to several other people who have had breast cancer and all of them had lumps 1 or 2 cm big, not 4, and only about six weeks of chemo, not six months.  She answered, "A 4 cm lump is large and you have very serious cancer.  Your cancer is serious, but it is curable."  I wanted to know, but I didn't want that answer.  She finished by saying she is also concerned about my blood history and wanted a hematologist involved in my case.  Evidently chemotherapy increases a person's risk of blood clots and with my family history of Protein S deficiency and blood clots on both sides of my family, she does not feel comfortable proceeding without a hematologist being part of the team.  She had scheduled me an appointment with Dr. Munoz for 2 o'clock.

After she left, April came back in and took us down to the lab with a genetic testing kit.  Bryon laughed as he drew another vial of blood from me.  I asked him if he wanted to bet I'd be back one more time today, and he said no way.  It was really nice being at the MD Anderson Cancer Center.  They all appreciated that we were out of town and were working hard to accomodate us so we could get everything taken care of that day.  I couldn't imagine not being at a cancer center and having to run all over to different specialist and make different appointments.  What we accomplished in one day probably would have taken at least a week if we were just seeing individual doctors.  I liked that every doctor we saw knew my case, had heard of it during tumor board, and had studied my case before they even came into the room.

On the first floor there was a great bistro for which we were grateful since we only had 20 minutes until the scanning appointment.  We grabbed a quick sandwich and headed next door to the imaging center.  They took me back quickly.  We hadn't waited to see anyone all day.  The technician started with a regular ultrasound.  As soon as she touched the wand to my stomach, that big black void showed up.  When I asked her if that was the mass, she said no, that was my bladder.  I knew she was wrong but didn't say anything.  She pushed so hard it hurt.  She couldn't find my ovary and acted like she didn't see the mass.  It's right there, I wanted to say.  It's that big black mass that you think is my bladder, but I didn't say anything.  She still seems to be convinced that my "bladder" was hiding things.  She had me go empty my bladder, although I told her I just did that before she called me back.  I did as I was asked, though there was nothing else to empty.  When I returned to the room, I asked her if she knew the size of my mass was 10 cm.  She said she had read that.  Finally, she said, "Maybe that isn't your bladder."  She was young and she was the first person I had worked with at the Cancer Center that I didn't have much confidence in.  She moved to the vaginal wand and took the picture she could.  She still seemed like she had trouble locating one of the ovaries.  I asked her if she had seen other masses that size and she said it was the biggest one she had seen, but other techs had probably seen ones that size.  I didn't think much of her comments since she seemed young, a little inexperienced, and I didn't have a lot of confidence in her.

We returned to the main Cancer Center building and went back to the second floor where all the doctors are located.  We were in the waiting room almost 30 minutes, which was the longest wait we had ever had, but Dr. Munoz was trying to squeeze us in and we appreciated that.  The doctors all share the same examine and conference areas and share the nurses.  Betsy, a sweet nurse we met last time who talks like Betty Boop took my history prior to seeing the doctor.  Dr. Munoz was super sweet and very cute.  He was great at explaining the increased risks of blood clots with chemotherapy and cancer in general.  He also explained that Protein S deficiency was different than people who needed their blood thinned.  It was a whole different issue.  Chemotherapy and cancer can cause blood clots and it automatically lower your Protein S.  For people who have normal Protein S levels, this is not a problem.  Since my levels were lower than normal and below the threshold, it presents a problem for my case--of course.  Though I had been tested for Protein S deficiency prior to my surgery which showed I was low, he needed different tests--of course.  He said based on my family history on both my mom and dad's side, he wanted to put me on Lovenox beginning with the surgery and keep me on it throughout all of the chemo--of course.  Lovenox is a shot you take in your abdomen area every day.  He said it may be too expensive and insurance may not want to pay for it, but he felt is was necessary because I was a high risk--of course.  He was going to do the tests and see what he could work out with insurance.  He sent me back to the first floor lab before we ended our day.

Bryon, the great blood guy, had already left for the day since it was past 3:30 at this point.  A woman took me back and drew another four vials of blood; that made ten for the day.  On the way out, I picked up a CD of my CT/PET scan then headed back into the real world.  We had been there all day.  As we sat in the truck, it was almost like when you emerge from spending a day in Disneyland and you forget there is another whole world beyond the gates.  Brooklyn was supposed to be coming in at 7:45 PM and the plan was we were going to wait to pick her up, but her plane was delayed.  I was exhausted--and cranky.  There had just been too much.  I was glad it was all in one day, but at the same time, it was so much to learn, so much to remember, and so much to process.  I was glad the day was over.

We called Preston and asked him to wait for Brooklyn so we could head home after a short stop at the mall to look for one more present I needed to get.  By the time I was in the middle of the mall, I was really done.  We just left.  My wonderful amazing husband, who I'm sure was going through his own mental exhaustion, drove me home and tried to give me anything he could to help me be better.  I wasn't in a "poor me" mood, I was just in a bad mood.  I was tired, I was done.

By the time we got home, I wasn't quite as cranky, but I couldn't blog.  I didn't want to talk about anything.  I just wanted to climb in bed and escape the world.  My dad called and I did want to tell him.  Although I didn't have my mom to curl up with and cry to, he was doing a great job staying super close to me and he made me feel safe.  I curled up on the couch upstairs and talked to him for about 20 minutes.  I think for the first time he was kind of scared too.

A wonder friend, Susie Case, had left a couple of great presents that helped me smile and feel better before heading to bed.  She had left me a "Kolor Kordinated Kemo Kit" in her cheerful way with a wonderful note.  She had also spend what I am sure was hours dusting my elephant collection!  Oh my gosh.  What a kind and wonderful friend.  It jolted me out of my bad mood and reminded me that I was not alone in this journey.  No matter how frustrated I became, people still loved me and wanted to help me.  Her kindness helped me go to bed with a smile after my very long day of doctors.

Surprise, The Battle Becomes a War........

12/17/12--Monday--Day 65--Though the Challenge Gets Bigger, I Will Remain Positive

After my rambling chronicle of Friday's test day, tonight I thought I would be blogging about my fun wig shopping experience on Saturday.  But alas, that fun must wait for a future blog as the doctor called with my test results at noon today and many are awaiting those results, as was I.

I started the day rushing out of the house trying not to be absent minded since subconsciously I knew the results would be in today.  I had decided not to focus on that; the call would come when it comes.  I hit the office running and had little time to discuss my tests or wig shopping experiences with my co-workers as I had an administrator's meeting scheduled to start at 8 a.m.  There were some issues with student accounts, so my phone continued to vibrate with text messages as the meeting started and my team was working through the issue.  As I sat in the admin meeting, I was surprisingly calm.  I focused on the meeting topics and on the student account issue and wasn't a bit impatient for the phone to ring.  Shortly after 11, we relocated the admin meeting to a local restaurant to continued our meeting.  We all ordered then began our activity when my phone rang.  It wasn't "blocked" so I didn't expect it to be the doctor, but it was a Phoenix number so I moved away from the table to answer the call.  It was Dr. Byrum.  I grabbed my notepaper and a pen and moved across the restuarant so I could focus and take notes on what she said.

She started by saying there were a couple of findings on the PET / CT scan that disqualified me from being part of the Z11 study.  She explained that there was a higher glucose cluster found on one of my internal mammary nodes which is a node more in the chest cavity.  The internal mammary nodes run on the inside of your breast between your two breasts by your breast bone as opposed to your axillary nodes (the two she took and found the 1 cm tumor on one) which run on the outside of your breast more by your armpit (here is a link with a picture if you want to see a graphic of the two lymph node areas http://ww5.komen.org/uploadedfiles/Content_Binaries/806-392a.pdf).  "It appears to be a small mass," Dr. Byrum said, trying to be reassuring, "but since it is not part of the axillary nodes where the other (1 cm) tumor was found, it may indicated there's more going on then we know.  We will need to do the full axillary dissection now," she said.  Here is another link to show and explain the axillary dissection http://ww5.komen.org/BreastCancer/LymphNodeStatus.html  This meant surgery to remove the all of the lymph nodes by my arm pit--the surgery we were hoping not to have to do if I qualified for the Z11 study.  I asked her if they would remove the internal mammary node and she said no, because of the location and because it was a small mass and the chemotherapy should take care of it.

I took a deep breath and then repeated back to her what I thought she had said so I was sure I understood her correctly.  I had.  Okay, so this was not the best case scenario.  This was not what we wanted to have happen, but it's okay.  We can do this.  I was reassuring myself inside my head when Dr. Byrum said, "There's more."  My heart stopped for just a moment.  "The scan also indicates there is a 10 cm complex mass by your right ovary."  Did I hear her correctly?  Did she just say 10 cm?  Yes, she said it again.  That's basically the length of an iPhone, I though to myself!  She continued by saying they believe the right ovary may be feeding the mass.  "What is a complex mass?" I asked.  "It means we know it's not just a cyst.  It's something more complex which could be cancer, but we won't know until we remove it and have it tested," she explained.  Everything had just become incredibly complex.

I moved to a table in the corner of the restaurant so I could focus better.  She explained once again that this was very unexpected and that this whole situation is very perplexing.  A person with DCIS doesn't generally have invasive breast cancer and certainly not cancer that has spread to three different areas.  Because of the unusual nature of my case, they were going to now take it to the gynecology tumor board which would meet this Friday.  After the board meets, she would set me up to see a gynecology oncologist as well as a gynecology surgeon.  Not only will I now have to have a full axillary dissection surgery, but they will also have to remove the mass and my right ovary.  Dr. Byrum said she and the gynecology team would try to do both surgeries at the same time.  Because ovary tissue is different from breast tissue, they can send the mass and the ovary to pathology while the surgery is happening.  While I am still opened up, pathology will check to see if it is cancer and if so, what kind.  Dr. Byrum explained that if it is cancer, they will then do a full hysterectomy right then while I was still in surgery.  She also said that if it is cancer, they hope it is breast cancer and not some other form of cancer, which would complicate things even more.

"On a good note," she said, "your HER2 results came back negative, so that's really good." I could hear her try to smile through the phone.  "Wow, this changes a lot I guess.  There is no reason to get my port put in on Wednesday if I have to do this surgery now.  What's the time frame on this?" I asked.   She agreed that they could probably put the ports in during the surgery but she would have to check.  Because of the holidays, the surgery probably won't be next week but the first week of January.  "I also want to set you up to see our lymphedema specialist," she said.  Lymphedema is the swelling of the arm that happens in a third of the patients who have axillary dissections.  She said it was precautionary so they could see how my arm is normally in case I develop lymphedema after the surgery.  "I also want to set up an appointment for you to get a genetic test done," Dr. Byrum said.  With the unusual circumstances of my case, she wants to see if I carry the breast cancer gene that is genetically passed down.  Though I have no family history of breast cancer, there are some indicators that my breast cancer may be a result of this gene.  "If your genetic test comes back positive, we will need to discuss having a double mastectomy at a later time."  Wow, that was a lot to take in.  Again, I summarized the facts to make sure I had them all and understood.  A few additional items are:  radiation will probably be required on my abdomen now, but it might be able to be done during the chemo.  If I have a double mastectomy, I might not have to have breast radiation (though I didn't ask Dr. Byrum that yet).  The surgery would take some recovery, so I wouldn't start chemo probably until February now.  The next step, wait for the schedulers to call.

I had to return to the table as I had left my purse and keys there.  I wanted to just run out the door, but I knew I couldn't.  If I left without explaining, the admin team would think the worst and it wasn't right to worry people.  I took a breath, went back to the table, and started to explain my phone call.  Not only had the food come, some had already finished eating.  I guess I was on the phone longer than I realized.  As I hit the highlights with the team, I tried to remain positive but tears welled up and I couldn't stop them.  Saying the words out loud before I processed it all was hard.  They were heart broken as they heard the words.  One administrator offered to drive me home.  I assured them I was fine, I just needed to find Greg.  A principal walked me to my car and I left with a big hug.

I tried to call Greg on the way home but he didn't answer.  I called Trina.  She answered, but couldn't talk.  I went home and didn't really know what to do.  For thirty minutes I began straightening and organizing the paperwork of the cancer notebook I was starting.  Greg finally called and I told him I was home and needed to talk with him.  Despite me being calm and collected, he knew it was bad news.  We sat on the couch and I started explaining everything detail by detail.  By then I had let it sink in and was matter-of-fact about it.  He began to tear up, but he too remained calm.  Part way through, Randall, Greg's dad, pulled up.  It served as a good break.  He flew in and out, chatted with us for a few minutes, then was gone.  I finished relaying all that I had been told.  We can't be surprised anymore.  It is just numb from another shock of reality.  After sitting with Greg for awhile, I drove back to work.  We had a busy afternoon with scheduled meetings and despite trying hard to get the team members together to update them, I was unsuccessful.  Finally, sometime after 5:30, I was able to update Bryan, Duane, Stephanie and Carol.  Dr. T came down as I was wrapping up.  I apologized to him for how I told the admin team but didn't know what else to do.  It was going to be awkward no matter what.  I felt better when he said I handled it with class and dignity and it was a good thing to do.

The genetic counselor called and set an appointment for 10 a.m. on Wednesday since I have an 11 a.m. with Dr. C, my oncologist.  I still don't know if I am having the port surgery on Wednesday or not.  I'm assuming not, but I will put in a call to Dr. C tomorrow.

This is not at all what I expected from the tests, but it is what it is.  I still can't let this get the best of me. Greg and I will hit this head on with full force and a positive attitude.  The mountain continues to get bigger and bigger, but I know we'll be okay.  Preston and Brooklyn both have finals tomorrow so we will tell them after they are done.  Hopefully they are busy studying tonight and in the morning and not reading this post.  On the bright side, I probably won't be bald by January so I will keep my hair another month.  And though the test results definitely made this mountain bigger, we will get through this.  Hopefully those following my journey with me will learn from my posts and I will be a positive influence to those around me.  Though the challenge gets bigger, I will remain positive!

Tests, Tests, and More Tests.........

12/14/12--Friday--Day 62--My Radiant Glow

Thursday evening Mike and Suzie, our friends from Albuquerque, drove down for the weekend. As we headed out to find a high protein dinner--as instructed by the PET team nurse, Jed, who called--a wave of drizzly rainy weather blew in.  It hasn't rained since summer so I couldn't help but think it was my mom's special way of reaching me.  She would have wanted to be by my side as I went through all this.

When we left Safford early Friday morning, it was still raining.  The Superior mountains were beautiful in the wet weather.  I was trying not to think about the radioactive crap that would be entering my body soon but it remained in my mind like a bad odor you try to cover up with a flowery room spray.  On the way to the Cancer Center we stopped by my Aunt Mary's and grandma's to drop off Christmas presents.  I always get courage from my 99 year old grandmother.  She is inspirational and amazing so I was glad to get a hug from her.

The first test was the echocardiogram and was at the hospital.  We went back up to the second floor where my surgery had been and I was happy to see my party receptionist was there again to greet me.  "I'm back," I said with a cheery smile and then reminded her I never got my margarita last time.  She smiled and took one of the dozens of sticky labels I had received downstairs when I checked in.  After confirming my name on my new ID bracelet, we turned to find a seat in the packed waiting room.  In the background, the TV was running details of the horrific elementary school shooting at Sandy Hook Elementary School in Connecticut.  I couldn't bare to watch.   It did remind me how lucky I was to be alive and getting ready to spend Christmas with my kids.

It was again a very short wait before I was called back.  The technician introduced himself, Ranson, a cool name I had never heard before, as we walked down the hall and into a small room with a sonogram machine and bed.  As I removed my top, the smell from my incision was noticeable to me once again.  I first notice the smell earlier that morning after getting out of the shower.  I decided to try to see someone at the physician's clinic after the test to get it checked out.

After removing my top and putting on a gown, Ranson had me lay on my left side. I quizzed him about his past, how he got into the field, how long he had worked there. He was actually from the heart hospital and was over helping fill in for someone on maternity leave. It made me feel good as we talked about the hundreds of heart he had seen. As I learned about his past, he reminded me a lot of one of my friends ex-husbands--proud of his skill level, a bit overconfident about just how great he was, but still very nice.  I like talking to the technicians and nurses about their lives instead of mine.  I think so many people are so focused on themselves and their problems that it is rare anyone asks or cares about the healthcare worker as a person.  I find all their backgrounds and different stories intriguing and admirable.

As Ranson started, he put the wand just below and between my breasts and the picture appeared on the screen of the machine.  He turned the screen so I could see and recognizing my interest and curiosity, was happy to share his knowledge about each item he saw.  I was sorry I hadn't asked if Greg could come back because it was amazing to see.  I could see all four chambers of my heart and a fun flapping piece that looked like it was dancing to its own beat.  He explained that was a valve between the chambers of the heart.  Soon there was color added which he explained represented the volume of blood flowing in, out, and through my heart.  "I'm not supposed to say anything, but you have a great looking heart," he said with a smile.  I told him I was going to paint a big red heart on my chest before getting there just to see if I could make someone laugh.  He chuckled and said just the thought of that made him laugh anyways.  He moved the wand into four different positions checking my heart from every angle, one way down by my belly.  I was glad my heart looked good and that he shared that with me.

When I returned to the waiting room, Greg was there alone.  He had sent Mike & Suzie to drop our car off to get some work done.  Greg looked sad and worried. "Are you ok," I asked? "I finally read your blog post from Monday," he replied.  He hadn't been able to read it after we met with Dr. C on Monday.  He was still in shock from what we heard and didn't want to relive it.  Greg's been struggling with all of this and though he's tried to be a trooper, it's been really tough on him.  I've always been his rock and now he's scared.  He's dealing with this plus he's in the middle of a really stressful website and has so much on his mind.  I assured him this was going to be a piece of cake and not to worry.

We left the hospital and went outside to walk over the the Cancer Center.  There was a brisk rush of cold air when the doors opened and I was glad the walkway was at least covered to shield us from the drizzle.  Before going inside, I called Dr Byrum's office.  I explained that the incision from my lymph nodes had been burning a bit and after showering that morning, I had noticed it was starting to smell.  Knowing we were in town, the receptionist was going to see if  nurse could see me and would call me shortly.

Once in the Cancer Center, we went in and down the hall to the lab.  They were busy too this mornings so we took a seat by the windows.  I went to check in and smiled at the sign that read, "Please tell us if you have a PICC or Port" realizing the next time I was there I'd have a Port.  "What's the difference between a PICC and a Port," I asked the receptionists.  They explained a PICC is in the arm and more temporary because it's more prone to infections.  A Port is more long-term.  "Hmmmm, guess that means I bought the long ride ticket since I'm getting a Port put in on Wednesday," I laughed.  The receptionist's smile dropped like she had suddenly done something wrong.    "No, it's okay," I quickly reassured her.  "I'm good."  She quickly tried to recover explaining that lots of people are getting Ports now.  Just as we were talking, a woman, maybe in her sixties with her head wrapped in a scarf, came up and interrupted our conversation.  She told the ladies something about her numbers being up and if she could keep them up, she was done.  They all cheered and then she assured them she would bring Christmas goodies by in a few days, even though her treatments were done for awhile.  I smiled and realized I would soon get to know these two ladies just as well over the next six months and then it would be my time for celebrating when it was my last visit.

Again I was quickly called back and sat in the same lab chair as before when they drew my blood prior to surgery.  Just as she was about to take blood, my phone rang and I knew the blocked number would mean it was a nurse.  She asked me to stop by on my way to the scan and I replied I would be there shortly.  After they took more labels and more vials of blood, we headed upstairs.  Dr. Byrum and Melissa were not in the office but another technician took me back to take a peek at the incision.  I took my top off again and the odor was noticeable to me but she didn't smell anything.  She went to get a PA to look at it.  The PA also didn't notice the smell and said it looked fine, but decided to remove the Sterile Strips and take a look. When she did, I saw the yellow pus on the strip. "Wow, yea there is a small infection starting.  You have a great nose," she said.  It hurt and burned as age squeezed the wound to remove the pus.  She brought in a small ultrasound machine to look inside the wound and see if there was anything below the internal stitches and there wasn't.  I had her take a picture off the incision w my phone so I could see it better and she showed me the two open spots where infection was just starting.  "Put a little Neosporan just on those two spots," she instructed.  Then she decided to remove the strips from my breast just to check those as well.  That was the first glimpse I had of that incision.  Wow, it was long but looked good.  It was just about a quarter of an inch above my nipple area and looked like a big frowny face.  Too bad it wasn't below my nipple so it would circle up and look like a smiley face I thought to myself.  The PA wanted to leave them both open so I pulled my top back on and headed out.

On down to the end of the hall on the second floor we went--same place I had my chest X-ray a few weeks ago.  They took us both back as soon as we got there.  I changed in the same little room as before but I received a gown and scrub pants this time.  They took me to sit in one of the recliners along the wall.  Three frowning men sat in the other recliners, some drinking stuff, some with IV's.  All looked unhappy to be there.   "Okay, I'm here so let's get this party started," I said but only the nurse laughed.  I asked her if they were having a big Christmas close out sell and if that was why they were so busy and she laughed again as well as the other nurse working with the gentleman next to me.  The three men remained stoic and never flinched.

A cute young nursing assistant with two short pony tails came over to take my vital signs and test my blood sugar.  I know a lot about blood sugar through our friend Suzie who is diabetic.  My blood sugar was 111.   I knew that was good and that Suzie would be proud when I turned down the cotton ball the nurse handed me after she poked me.  Next the nurse came to start the IV.  I asked her put it in my arm instead of my hand, which she did.  After she inserted the needle, nothing was attached to it--that was curious.  Maybe they rolled in the IV pole once I was in the relaxation room. Jed, the nurse who called me on the phone the previous day, came over and introduced himself and said he would be taking me back.  He explained that I couldn't use my phone as the solution they were putting inside me would be drawn to any moving muscle or moving body part, including my hands if I was texting.  That's why they wanted me to lay still and not talk.  I kissed Greg goodbye, handed him my phone then followed the nurse back to a very small room with a recliner.  On one wall was a tall rectangle picture that was backlit and had a red rock mountain with a waterfall on it.  I sat in the recliner and Jed covered me with warm blankets and handed me a call button.  He said Dave, the radiologist, would be in shortly to start the injection.  I asked for a glass of ice water and he said left to get it.  When I was left in silence, I began getting nervous.  This wasn't going to work.  I heard every sound and there was no way I was going to relax.  When Jed returned with my water, I asked if he could grab my phone from Greg because I was definitely going to need some music to relax.  He brought it right to me and I dialed in Pandora's relaxation station just before Dave came in rolling a cart.

There was still no IV as I expected, but there was definitely a syringe on the top of the cart along with an ominous looking long rectangle box.  Dave did a great job explaining what was going to happen.  He was going inject a sugary solution with a radioactive dye in it.  It would take about an hour and a half for that to circulate through my body.  The solution should be attracted to any cancer cells in my body and when I go through the scan machine, the radioactive material will light up any areas where the solution has accumulated.  He also warned me again not to text or move a lot as muscle activity will also attract the solution and give a false reading.  He told the story of a 20 year old man whose hands and wrists lit up after he spent his relaxation time texting.  They don't even want you reading because of the muscle movement.  I assured him my plan was to take a nap.

He picked up the needle and inserted it into my IV but didn't push the liquid in.  Instead, he reached for the heavy metal box.  It was sealed tightly with a suitcase looking clasp.  He opened the clasp then used both hands to lift the heavy hedged lid.  He took out a metal cylinder with the circumference of a silver dollar and the length of about 10 inches attached to a long needle on one end.  I swear it looked like something straight out of a Frankenstein movie.  He inserted the needle of that shot into a tube connected to the other shot.  Then he took the plunger on the metal shot and drew it back slowly, then pushed it forward again.  He repeated that motion three times and explained he was mixing the sugar solution from the other shot with the radioactive material in the metal shot.  Next he pushed the sugary solution shot into my IV until it was completely dispensed.  That was it.  The metal shot went back into its lead box and was sealed by securing the clasps.  He detached the other shot then pulled out my IV needle and disposed of both items in a sealed heavy lead canister in the corner of the room.  He asked if I had any questions then turned off the lights and said he would be back in about an hour and a half. The light from the picture was all that lit the room.  I leaned all the way back in the recliner, started my music, tucked under the warm blankets, and tried not to think about what had just been injected in to me.

It didn't take long to doze off as I hadn't slept well the night before.  The hour and a half went quickly as naps always seem to turn hours into minutes.  Soon there was a tap on the door and Dave came in.  He asked if I was ready and he said we would start in a few minutes.  Jed came in and said I needed to get my bladder as empty as possible so he took me across the hall to the "hot bathroom".  I laughed at the sign and even took a picture of it.  It was just too funny.  It wasn't a bathroom that was warm, but instead was a bathroom completely lined in lead.  This was because I was so radioactive and my urine was very potent.  The relaxation room we had been in was also lead lined.  Jed and Dave both wore little clips that were radioactive detectors.  Jed explained that because they were around so much radiation, they had to limit their exposure as much as possible.  If their little badge lit up, they were done working for a year so they were always over careful about exposure--hence, the lead-lined rooms.

After I used the "hot bathroom" we went down the hall to the room with the scanner.  I couldn't help but think about how I must be glowing.  The scanner was a huge donut-looking thing with a small cushioned backboard bed that obviously fit through the what seemed like an awfully small donut hole.  I sat on the edge of the bed waiting for Dave to rejoin us.  Jed said there were some technical difficulties Dave was fixing then he would be in.  I snickered as it reminded me of the doctor who said "oops" during my seed localization.  When Dave came in, he assured me it wasn't anything technical with the machine, but I couldn't help but giggle.  Jed laid me on the table, placed my arms above my head, covered them in blankets along with the rest of my body, and left the room so we could start.  The ceiling had pictures of poppies as shades over the fluorescent lights, and I stared at them until Dave's voice came over the intercom. "Okay Susan. You're about to make your first pass through the machine.  Remember to hold still and don't move, even when you get to the other side." Dave had explained earlier the first pass through would be the CAT scan.  Then the PET scan would start from the other side and pull me back through the machine. The CAT scan would be over quickly, but the PET scan would take 25 minutes.  Every three minutes my bed would move a few inches and the scan would start again.    It would scan every part of me from the top of my eyes to my thighs.  Over the intercom Dave reminded me how much more time was remaining.  Twice Jed actually came back in the room and checked on me and told me the time remaining.  As instructed, I didn't move a muscle other than my eyes scanning back and forth taking it all in.  Soon it was over and my bed returned to the starting position.  Jed allowed me to bring my now numb arms to my sides but had me stay put while Dave made sure the CT scan and the PET scan lined up.  They did so Jed unstrapped me and helped me up.  I asked to see a picture of the scans but Dave said there was nothing to see yet.  The computer had to render the images and merge them into one.  Jed explained I could get a copy of the scan on a disk on Monday over at records. That would be cool.

So that was it.  I got dressed and went out to the waiting area.  The potency of the radiation reduced by half every two hours so within 22 hours it should be all out of my system.  They suggested I drink lots of water to help it along.  The day of tests were done.  Now it was a waiting game once again.  All of the answers would be in on Monday.  Would the scan show other cancer or be clear?  Would the blood work be HER2 positive or negative?  Would I have more surgery or have the extended 6 months treatment after my 6 months of chemo?  It was all to be answered on Monday.  So for now, the tests were done, the jury was out, and it was just another waiting game.  It was time to leave the Cancer Center for now, enjoy a weekend with friends, and let my own happiness be my radiant glow!

In Search of Answers........

12/13/12--Thursday--Day 61--And the Wait Continues

Today is Thursday, Tumor Board day.  From 9:00 am on, I was on edge waiting for my phone to ring.  Would I qualify for the Z11 study?  Would I have another surgery?  Were they going to take out all of my lymph nodes?  I had been waiting since last week for this day.  I continued to work trying not to think about it.  By 10 o'clock, still nothing.  I had a meeting at 11.  Sure enough, as soon as I started the meeting, there was a call.  It was a Phoenix area code so it had to be the Cancer Center.  I quickly excused myself to answer.  Instead of Dr. Byrum's voice, it was a man who identified himself as being from the PET scan team.  Just after my last post Monday night, scheduling had called me first thing Tuesday morning to change my tests from Monday to this Friday, tomorrow.  Now they were calling to give me instructions for the morning.

I returned to my meeting.  More waiting.  By 12:30 I decided to text Melissa, Dr. Byrum's assistant.  No reply.  Finally, just as I was about it give up, the Blocked image appeared on my screen about 1:30. It was Dr. Byrum.  She explained that the Tumor Board had reviewed my case.  They agreed that IF I met the qualifications for the Z11 study, they would support me not having surgery.  The problem was, they didn't know if I met the qualification yet.  She explained that there were some additional tests on the tumor that were not back yet.  While they knew the DCIS part of my breast cancer was estrogen positive, they didn't know if the invasive tumor was estrogen positive.  The report for that should be in on Monday.  If it is not estrogen positive, I may not qualify for the study and therefore, may have to have the surgery.  They also need my HER2 to be positive, at least I think that is what she said.  If I heard her correctly, that puts me in a bit of a catch-22.  HER2 positive may mean no surgery, but it also is what will extend my treatments for an additional 6 months.  As she was talking about my HER2 levels, she mentioned my score was a 2+.   I knew it was a 2, unsure without further staining; what I didn't know is it was a 2+, closer to a 3 which is positive.  I am guessing my HER2 will come back positive.  She assured me we would know more on Monday and she would give me a call.  More waiting.

So for now, today brought no answers and tomorrow brings only more tests.  In the morning, we will head to Mesa.  First we go to the hospital for the ecocardiogram.  That will help set a starting point on the status of my heart prior to chemo.  From there we will go to the Cancer Center for labs.  After that, we will head to the second floor for the PET scan.  In talking to the man from the PET scan team today, he told me nothing but water after midnight.  I was also supposed to eat high protein, low sugar, low carbs today.  I told him I sure wish he had called earlier since I brought sugar cookies and raspberry M&M's in for the team today.  Before getting off of the phone, I asked him what a PET scan was--how did it work.  He answered by asking if I had had a CAT scan.  No.  What about an MRI.  No.  He seemed a little loss with nothing to compare it to.  Then he explained it step-by-step.  When I first go in, I will get an IV.  That surprised me.  He said it was a sugary substance that they had mixed with radioactive material.  Once I get the IV, I go to a relaxation room for about an hour.  Then he paused, looked at my paperwork and corrected himself, "Oh wait.  Yours will be about an hour and 20 minutes."  I have no idea what makes mine longer than his first example but I didn't want to ask.  After I take all of the fluid, I will lay flat on a table and move through a donut looking device.  I have seen picture of those machines so that made sense.   He explained the scan will take about 25 minutes.  "Will my husband be able to come to the relaxation room with me?"  His reply shocked me, "No.  We want as few people as possible to be exposed to the radioactive material once we start putting it into you."  For some reason, that just doesn't sound so reassuring.  So tomorrow will be it--the beginning of my body being filled with materials that are harmful to the average human being.  It's ironic since all of my life I've worked so hard not to put harmful substances into my body.

Last night in Wal-Mart I ran into Cindy who personally knew the struggle I am facing.  She had breast cancer seven years ago and offered comforting support and advise.  We must have talked for an hour standing in the aisle.  I took in every piece of advise she offered.  She said she tried to wear a wig, but it bothered her too much--same story as my friend Paula.  She said she went bald within the first two weeks of starting her chemo.  She wore lots of scarfs, and something I hadn't thought of, long dangly earrings--that's a great idea.  As we stood there talking, I realized a couple of things.  One, she was the first person I know who has had cancer that I have actually talked to face-to-face.  That was good.  Two, her hair was beautiful; mine will come back and it will be okay.  Three, I have wondered if I my skin would be affected by all these poisons; was I going to look old and wrinkly afterwards?  She looked wonderful--no wrinkles, good complexion; I was going to be okay.  Four, I think my tumor is bigger than most and I think the chemo is longer than most.  At this point, I have communicated with quite a few people who have had breast cancer.  I haven't found anyone who has had the size of tumor I had.  Her's was 1 cm.  Mine was 4 cm.  She also only had to do 6 weeks of chemo.  That seems to be the average.  Why am I going to have to do six months of it?  Hmmmmm.  Interesting.  I wish I would have asked Dr. C to comment on the size / severity of my cancer.  Is it a 2 out of 10, or a 6 out of 10?  How does it compare to other women?  I guess it doesn't matter, but you hear lots of people who have survived breast cancer, had mastectomies, chemo and never had another problem.  Yet of those who have told me this, none have had 6 months of chemo.  Why is mine gong to be so long?  When I see Dr. C next Wednesday, that will be one of my questions, but for now, it appears the answers--all of the answers--will have to wait as this wait continues.

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.

Out of Frustration Come Thankfulness.....

12/9/12--Sunday--Day 57--The Small Blessings

So these last few days have been a bit of a challenge.  The ups and downs of the pathology report last Tuesday put me on edge anyway and knowing I was going to wait another week and a half for the tumor board before I knew anything began testing my patience.  On Tuesday, my surgeon suggested I save a trip and come next Thursday for my post op appointment instead of this past Thursday.  That way it would be after she presented my case to the tumor board and she would have more information.  At the time, that seemed reasonable, but as the clock ticked on, I realized, I still didn't even have an appointment with an oncologist.  I wanted to see Dr. Cianfrocca because she came highly recommended and treated Charlene's mother who was a personal friend of mine since I was a young girl.  Each time I asked about when I would see an oncologist, I kept being told they would make an appointment for the day of my post-op appointment, but no one ever did.  By the Monday after my surgery, no one had set up an appointment so I finally called myself.  By then, the doctor had no openings until January 3rd, which I took.  On Tuesday, while giving me the first incorrect report on the pathology findings, Melissa, the surgeon's assistant, said she saw some room where she might be able to get me in to see Cianfrocca on the 19th.  I asked her how since on Monday they told me she was booked until January 3rd.  Melissa said, "Well, that's because you were just a DCIS case.  Now that you are an invasive case, they may find a way to move you up."  While that made me feel better, it definitely made me feel worse.

Wednesday, I waited to hear from scheduling to confirm my Thursday appointment was moved to the following Thursday, and to see if my oncology appointment got moved to the 19th.  No one called.  By 3 o'clock, I decided to call the scheduler and check--no answer.  I left a message.  By 4:30, I left another message.  No returned call.  Thursday morning, I waited until 10 am, my original post op appointment time, and I called again.  No answer so I left another message.  By 11:00, I was completely frustrated.  I called the main line of the Cancer Center and came a little unglued.  I told them I was tired of not getting through to talk to anyone and not having my messages returned.  I said if they couldn't be proactive on my part, I was considering looking for a different Cancer Center.  I was transfered to a patient relations representative and after telling her of my frustrations, she put me on hold and Melissa came on the line.  Melissa apologized for not getting in touch with me earlier that morning but she had everything arranged late Wednesday evening.  I had an appointment to see the oncologist, Dr. Cianfrocca, at 4 on Monday and then I would see Byrum for my post op following that.  Wow.  I couldn't get in until January 3rd, then because I was an invasive case, I might get in the 19th, but now, I was going to get in Monday!  Holy cow.  Was I dying?  It didn't matter.  I finally felt a little bit settled.  Melissa gave me her cell number and invited me to call or text if I had any other questions.  And though I knew I wouldn't have all the answers until after the tumor board on Thursday, my appointment on Monday would at least I give me a doctor to whom I could ask all of my questions.

Friday I spent the morning working with insurance and trying to understand how all of these claims were going to be processed, why hospitals billed us before insurance had even paid, and when we should pay what.  We had received the biopsy bill.  It was $7,500.  Because of my toe injury earlier in the year, there was some confusion as to whether I had reached my out-of-pocket costs or not.  After meeting with Jenny, the local insurance representative, I started to feel a little more relief.  She assured me she was going to help us through this entire process--God bless her--and to leave any worry about bills to her.  What a great person to have in my corner.

By mid morning, I receive a call from my AFLAC representative, Jim.  Jim, the AFLAC guy, has been coming to our insurance sign-up days for as long as I can remember.  He's the last station you visit where you turn in all of your paper work.  He's an older man whom I have always loved and been very attracted to his energy.  Each year I would wait to see him instead of another open agent because I just loved talking to him.  In fact, one year, he didn't show up.  Worried about him, I found out he had fallen and sustained a major injury to his shoulder requiring surgery.  I found him a duck card (AFLAC--duck--you get it), and wrote him a duck poem about getting better, and sent it to him.  He was so moved the next year when he saw me that I had been so kind.  He said he had never received anything like that.  I was just glad he recovered and returned.  Several years before that, about eight years ago, Jim started talking to me about adding a cancer policy.  I told him that seemed silly since my regular health insurance paid my health costs, even if I got cancer.  He explained how the cancer policy helped pay for all those other expenses not covered by insurance.  I told him no one in my family has ever had cancer and politely thanked him but said no thanks.  The next year, he talked again about the cancer policy and recommended I seriously consider adding it.  Once again, I politely declined.  The third year, he began again.  He explained how important it could be and how helpful it could be.  I don't know if I admired his persistance, or something just opened my mind, but Greg and I decided to add a cancer policy to our accident policy that year and we've been carrying it for the last five years.  So when I received a call from Jim Friday morning, I almost broke out in tears, and so did he I think.  He was in total shock.  We both recalled how much he had to pushed to get me to take out that policy.  I told him he is one of three angels who, because of their actions, I am in a better place now than I could be.  I told him he should keep being persistent and no one should ever walk out of insurance sign up without getting a cancer policy.  This policy is going to save us when it comes to traveling to Mesa for all of the treatments along with hundreds of dollars of other types of expenses that are beyond the basic health care.  There is even a benefit to help with the cost of a wig!

I was glad when the weekend came as our friends from Phoenix, Paul and Diane, decided to come to Safford for a visit.  It was nice to escape what the upcoming week was about to bring and just enjoy hanging out.  They were a great distraction as we played board games, went to dinner, and talked about everything from pink elephants to raising kids to vacationing.  Being a nurse, Diane was able to spend a little time explaining some of the details on the pathology report.  I think the most scary part right now is the idea that the cancer has spread from being just a breast cancer to being a cancer that has entered my lymph system.  That is probably my biggest concern and question for the oncologist tomorrow.  Just what does that mean?  Up until now, we have focused on this being breast cancer--the only curable cancer.  Hmmm, where exactly are we now?  I'm glad I'll be able to ask these questions in the next 24 hours and get a more clear picture of where we are heading.

So while this has been a very emotionally charged week, through all the frustration, all the scariness, and all the questions, it is all of the people who have cared and are actively fighting in my corner, even when it may seem like they aren't.  I'm thankful for Melissa, Jenny, Jim and most of all, for all of the friends who have been so supportive through my ups and downs.   And while we are all waiting on pins and needles for some answers to come tomorrow and Thursday, for now I'm just thankful for all of the small blessings I continue to receive.

The Sun Will Still Come Up.......

12/5/12--Wednesday--Day 53--Regrouping

So the sun did come up this morning and even through tears, which started as soon as my eyes opened, it was a beautiful sunrise.  I cried through my shower and tried to figure out how I was going to get the tears under control.  This was just a nightmare, once again.

Text messages started arriving shortly after 6 am from amazingly supportive friends who woke up to the devastating words from my blog.  I can't say this enough--the support is what has helped me the most.  Please know that.  Thank you SO much for following my blog, leaving comments (I know it's a challenge) and sending me FB messages or texts.  From someone who is normally completely intrinsically motivated, the outreach so many have shown has been my saving grace.  Please continue with me down what is now going to be a very long path.  I can't see who reads my blog, but I can see the statistics on how many are reading it.  I look at that number every single day for reassurance that people care.  This is going to be a longer journey than expected.  Please continue to care.

One text that came this morning apologized for kidding with me about being lopsided.  I reminded her that I made the first lopsided remark, and that it was her making me smile with her humorous viewpoint about this that helps me stay upbeat.  By the way, I have cancer.  It's okay to say it, ask me about it, be lighthearted about it, and help me keep a little warped sense of humor about it.  It may be the second most important thing to keep me going through this.

So after my support team lifted my spirits a bit, I dried my tears, started getting ready for work, and started reflecting on a few things.  Reflection #1--2013 is probably going to stink as much as 2012 did, and that's okay.  I made it through 2012 so I can surely make it through another crappy year.  Reflection #2--It is kind of cool that if I had to get cancer, I would get the only cancer with a theme (perfect for a former yearbook advisor).  I mean let's face it, what other kind of cancer has a pink theme and can make NFL football players wear pink for an entire month?  Next October I'm going to be out on that Cardinals field as a survivor--bald head and all (okay, maybe in a wig).  Reflection #3--I can write as much as I want to in my blog and no one will complain about me being long-winded.  Now my short story can become a novel.  Someone told me how much they appreciate me sharing my journey through my blog because they are learning first hand about how a friend with cancer truly feels, which really is a very rare opportunity.  I have never been close enough to someone who has had cancer so I had no idea, no glimpse, no background information with which to relate.  One of the reasons I started the blog is to give others the experience I've never had so hopefully you will grow through this journey with me (always the teacher :)  Reflection #4--Get better at accepting uncontrollable change.  Just when you think you have something about this diagnosis figured out, it changes so just start accepting that.  You're not going to know until you know, and that's ok.  Reflection #5--There are still people in much worse shape with much worse diagnosis's than you, so keep your perspective clear.  That's important.

And with that, I Vitamixed a new recipe and headed for work.  After the initial conversations, I focused on what I am being paid to do there--work--and I accomplished many of my goals for the day.  After work I picked Greg up and we escaped to a movie.  My mind was completely engrossed in temporary studio reality until the bald character dying from cancer made an appearance.  It was like one of those special effects when the camera makes a super fast-forward zoom in.  Oh yea, holy cow.  I have cancer.  Besides that, the movie as a good break from reality.

So, again, thanks for the continued support.  This journey has become longer than expected.  I am super scared, but, as one of my friends would say, it's time to put on my big girl panties and face each stage as it comes.  And no matter how gloomy things may get, the sun really will still come up.

The Hill Becomes a Mountain........

12/4/12--Tuesday--Day 52--Shock and Disbelief, Yet Again

So as much as I was trying NOT to count down to my Thursday post-op doctor's appointment, I was shocked to get a call at lunch today from the doctor's office.  I had returned to work after staying busy at home most of yesterday and feeling fine.  The morning was busy with activity and my mind was focused.  As I drove out of the parking lot to go home for lunch, my phone rang. "Blocked" told me it was probably the Cancer Center checking on me.  Sure enough, it was Melissa, Dr. Byrum's assistant.

At first I thought it was just a standard post-op check as she asked how I was feeling, how were the incisions, etc., but then she said she had the pathology report.  I stopped breathing for just a second.  She confirmed what we knew, the mass was larger than expected, but then delivered the great news--the margins all came back completely clear--the areas that were taken all around the mass were cancer free--Dr. Byrum had cut everything out.  Hallelujah!  My heart jumped.  "Oh my gosh!  That is great new!" I said and Melissa, in her overly optimistic way completely concurred, "That is wonderful news!"  Still in her positive, upbeat tone of voice, Melissa then explained the report also showed the cancer was micro-invasive, but in a very minut way.  "The micro-invasion on one of the lymph nodes was just a microscopic speck.  Basically there are a few cells in one of the nodes that tested positive for cancer," she said.  But then she quickly explained that it was a new, very finite test that picks up these microscopic details.  A year ago before this test, my node would have tested negative with no invasion at all, but this new test just picked up more microscopic cell detail.  "So what does that mean?  What's next?" I asked her.  She said that they may choose to run further tests on the sample, one particularly.  They couldn't run that one until 14 days after surgery, but it would come back with a percentage of how likely it would be for the cancer to come back.  She said then I would sit with an oncologist who would recommend the best course of action based on that percentage chance of reoccurrence   Melissa assured me that this is all pretty good news and not to worry.

Half way through the conversation I had walked in the door at home.  Greg was sitting on the couch waiting for me to finish and give him the update, which I did.  He was devastated.  I was surprised by his reaction.  "This is not bad.  It just means we have a little more waiting.  We should be happy that the margins were clear," I said.  "Basically," I explained to him, "we have moved from the best case scenario--surgery, radiation, 5-year pill--to needing to have another test and have the oncologist recommend additional treatment if necessary based on the results of another report.  No big deal!"

We ate lunch and I headed back to work.  My head was spinning because Melissa had said a lot of things so I was trying to sort it all out and remember it all.  I decided to call my friend Charlene, the one who originally helped me understand the very first pathology report.  As I talked with her, she was able to take the bits and pieces of information from Melissa and construct them into a much clearer picture for me.  Okay, it made sense.  Basically it was micro-invasive so instead of being in the best case scenario, we were now in a bit of gray area until an oncologist got involved and one more report came in, but it was still sounding very positive.

I quickly updated my team about receiving the results and we all were exited about the clear margins.  Even though there was now a little more unclearness, the positive still overpowered the doubt.  I also updated my boss and Henry, trying to be optimistic about the good news of clear margins.

And then, once again, the bottom fell out of my world.  The phone rang as I was walking out of Henry's office. "Blocked" once again told me to take the call.  This time it was Dr. Byrum.  She explained that she had been in surgery all day but she wanted to call me because Melissa may not have read the report correctly and may have given me incorrect information.  She said she had been looking at the report for the last hour and had been on the phone talking to the pathologists.  The cancer was just presenting itself as something completely different than what was expected.  She was surprised at what she found during surgery, and now even more surprised by the pathology report.  She expected it to be mostly DCIS (Ductal Carcinoma In Situ)--the original diagnosis from the biopsy, with possibly some micro-invasion.  Instead, a majority of the mass was invasive, not micro-invasive, but invasive.  In addition, the lymph nodes was not micro-invasive, but actually had metastasized into a one centimeter tumor.  Basically the cancer had now moved to a different body part.

I kept listening trying to make sense out of what she was saying.  I was about to ask for clarification when she said, "I want to present your case to the Tumor Board next Thursday."  I had heard of tumor boards from my friend Trina as well as Charlene.  Why was she talking about my case going before a tumor board?  I have DCIS.  I have a cancer that some even called pre-cancer.  We caught it early, remember.  Wait a minute.  What is she saying?  What's going on?  My head was spinning.

As politely as I could, I told her I was confused.  She began patiently explaining it again.  She expected the mass to be "patchy", but patchy with DCIS.  Instead, the mass was patchy with a majority of the it being metastasized into an invasive disease.  In addition, it now was not just in my breast, but in one of my lymph nodes.  "At this time, I can't say that you won't have to have more surgery.  We may have to go back in and take additional lymph nodes or possibly even all of your lymph nodes."  She explained that there are about 17 lymph nodes and that they try not to have to do that surgery because a third of the patients end up with lymphedema, which is a swelling of the arm.  Then, she said the worst.  "You will have to have chemo now; that's a given."  I swallowed hard.  I didn't know what to say--what question to ask.  "Will the chemo be before or after the radiation?"  "Before."  "And how much chemo?" "Six months."  Wow.  It wasn't best case scenario, it wasn't questionable, gray area, it was the worse case scenario I had imagined.  Granted, it wasn't the worst possible situation--I wasn't dying--that I knew of anyway--but is was the least desirable outcome I had let myself imagine.  Chemo for six months!  She explained there would be a 3-4 week break after the chemo and then I would have to do the six weeks of daily radiation.  "I know this is a stupid question, but are there different levels or strengths of radiation?  Will I lose my hair?"  "It's not a stupid question.  You're the second person today who asked me if that was a stupid question.  It's not stupid, but yes, I'm afraid the answer is you will lose your hair."

I was sitting at my desk trying not to well up with tears.  Carol was there and had picked up on the information not being good.  I could read the sadness on her face.  Since I was recovering from the surgery without issue, Dr. Byrum suggested we cancel Thursday's appointment and reschedule for next Thursday after the Tumor Board meeting.  "I'll have more information for you then."  I agreed.  It only made sense.  Besides, there was really nothing we were waiting on now.  I would have chemo.  I would have radiation.  The cancer is invasive.  The cancer has spread.   It was only that very first Friday night sitting in the parking lot of the doctor's office after hearing the news that I had cancer had I been this shocked and full of disbelief.