Timeline, part 2

My last post ended with Charlie's birth.  A large part of me felt that since my pregnancy was over, the cancer should be over as well.  They had been woven together for seven long months.  It was hard for me to separate them and to think about continuing with treatment.

October 17, 2011 ~ We went home.  Charlie was 4 days old and oh, so tiny!  Life for the next few weeks was filled with newborn appointments, post-partum appointments, soccer practices, soccer games, field trips, introducing family and friends to our little miracle, and snow days.  I remember how it seemed that the seasons changed from late summer to full blown winter during the week I was in the hospital.  Those days were so busy and so filled with joy.  It was almost inconceivable that cancer could still invade our lives.

November 10, 2011 ~ I had my first PET scan in preparation for starting radiation.  Not only do I have no clue what the results were, I don't even remember being worried or stressed about what the results might be.  Now, I get a PET every six months and can tell you when I got the last one, what the results were, when the next one was, and when I received my first NED results.  I was in serious denial about how serious my diagnosis was and basically was still just doing what my docs wanted me to do.  Looking back, I shake my head about how naïve I was.  A small part of me longs to be that naïve again.

November 15, 2011 ~ Charlie had her one month check up in the morning and I went for my radiation simulation in the afternoon.  For me at least, the radiation simulation was rather surreal.  The main reason for the simulation is to get everything ready for rads to go smoothly.  They made an insert for me to lay my head and left arm.  It was a bag of little styrofoam balls that gets the air sucked out of while I was on it exactly the way the doc wanted me to be.  Your body needs to be in the same position for each treatment.  After my treatment was finished, they let air back in the bag and it was ready for the next patient.  I also got my first tats that day.  They tattooed a few little dots on my chest that the techs used to line up the machine before each zapping.  A lot of explaining was done, so that I would be prepared, but I'm not sure that being prepared for something like that is actually possible.

November 24, 2011 ~ Thanksgiving meant so much more to us this year.  We had so much to be thankful for and had settled into life with a newborn.  The return of cancer treatment in our lives was looming, but we were working hard to ignore it.

November 30, 2011 ~ We took Charlie to the Springs for a hip ultrasound.  The results were normal.  Earlier in the day, I had a check up with my medical oncologist.  We, of course, took the opportunity to show off our little miracle girl to some of the medical people who had helped get us this far.

December 1, 2011 ~ Charlie had a cardiology appointment the day after having a hip ultrasound.  Again, the results were normal.  Earlier in the day, I had my last check up with my amazing maternal/fetal group. 

December 5, 2011 ~ Eric took me to my first radiation appointment.  Most of December and January were controlled by rads appointments.  I went daily, Monday through Friday, for 34 treatments.  The actual zapping was fairly quick, about 15 minutes.  Most of the time the waiting wasn't too long either, as long as both machines were working properly.  My treatment was an hour away from home, however, which made the whole thing quite a time commitment.  I was still breastfeeding Charlie, with the one breast I had left.  A routine was quickly established.  A friend or family member would drive us to Pueblo.  I would nurse Charlie, leave her with our driver, put on a hideous cover up, head to the waiting room, get zapped, get dressed, and then head back home.  That was our life for those two months.  We never could have gotten through that time without our family and friends stepping up!

December 12, 2011 ~ I even had rads on my birthday.  They did give me Christmas and New Year's Day off.

January 24, 2012 ~ It was such a relief to finish radiation treatment!  The routine we were in was becoming such a hassle.  Rads for breast cancer is basically like getting a sunburn on top of a sunburn on top of a sunburn for 34 days.  I was beyond ready to be done with the whole thing!  Four years later, I still have a tanned area from that treatment.

January 27, 2012 ~ I took Tyler to a practice session for the standardized testing he would have to take the following month.  He is in an online school, so is considered a public school student and has to do all of the requirements that kids in brick and mortar public schools have to do.  That day, in the bathroom of the public library in Pueblo West, I met one of our family's angels (and now one of my best friends).  She probably wouldn't describe herself that way, but I will always do so.  Jen was there with her daughter, who is in Ty's grade and was in the same online school.  Jen's son is a month younger than Charlie and somehow, in that bathroom, we got to talking about breastfeeding and how I wasn't looking forward to having to stop for my upcoming chemo.  I wasn't producing much for Charlie, with only one breast and everything that my body had been through, but it was still very important to me.  With how tiny she was, her docs had her on a preemie formula to supplement my breast milk.  To condense the story a bit, Jen started supplying breastmilk for Charlie.  Jen's milk was amazing and Charlie thrived on it!  We were even able to stop the formula supplementation.  The original plan was for me to "pump and dump" through the four weeks of chemo and for long enough to get it out of my system.  My body just couldn't produce enough with pumping and I ended up on steroids near the end of chemo so I had to give up.  Jen ended up supplying Charlie with breastmilk until after her first birthday.  Breastmilk donors provide so much more than just milk.  Thank you, my friend!

February 13, 2012 ~ Charlie turned four months old.  Eric and I drove her up to my cousin's house in the Springs where I nursed Charlie for the last time.  Then we left her with my cousin to head to the infusion center to start chemo again.  It was hard, but a different kind of hard than the previous first chemo was.  I completed the four Taxol treatments that we didn't fit in during my pregnancy.  They were weekly, every Monday.  I didn't have the allergic reaction again, and we were even able to speed things up a bit since we didn't have to worry about protecting Charlie.

February 29, 2012 ~ Tyler had that standardized test in Pueblo in the morning and I went to the ER in the evening.  I'd been having symptoms that worried my medical oncologist.  He wanted me to get checked for pneumonia.  After quite a while there, pneumonia was ruled out, but the radiologist had a nurse give me a piece of paper that said I might have cancer in my lungs.  This is one of those things I've had a hard time letting go of.  That is not the proper way to handle the possibility of cancer.  Not even close.  This was the beginning of the worst nine and a half months of my life.

March 1, 2012 ~ I met with my radiation oncologist.  It was an already scheduled post rads check up, but the focus ended up being on that piece of paper from the ER radiologist.  Dr. Stageburg was fairly convinced that what was in my lungs was actually radiation pneumonitis.  We would have to wait a month for another chest x-ray for confirmation.  Radiation pneumonitis is basically like pneumonia caused by radiation treatment.  I was put on steroids for at least a month and officially gave up on the pumping and dumping.

March 5, 2012 ~ I finished chemo.  Everyone expected me to be thrilled.  I had my healthy baby girl.  I was done with cancer treatment.  I wasn't able to explain how I had this dark cloud hanging over our happiness.  It was only a possibility, but it was a terrifying possibility. 

April 5, 2012 ~ The month long waiting period was over.  I finally got to have the chest x-ray that was supposed to confirm that my lungs weren't growing cancer.  The x-ray confirmed that the spot on my lungs was radiation pneumonitis, not cancer.  The x-ray also showed an area that worried my oncologist.  That cloud that was supposed to go away got darker and scarier.  I would have to wait another month, this time for a CT scan.  Life goes on, and I went along with it, but I wasn't all in the way I wanted to be.  We still had soccer games and field trips and physical therapy and checkups and standardized tests and a science fair.  I was still Mom to two amazing kiddos, but that cloud was there.

May 1, 2012 ~ I could basically copy the last paragraph, change a few words, and paste it here.  The CT cleared up the worrisome area from the last x-ray, but brought up a new place that might have cancer growing in it.  This time we would wait another month for a PET scan and my first mammogram.  The soccer games ended, the school year ended, swim season started, Charlie turned 7 months old on Mother's Day, and that cloud was getting harder to ignore.

June 5, 2012 ~ Most women don't have a mammogram until after they are 40.  Most women have two breasts at their first mammogram.  Most women haven't gone through cancer treatment before their first mammogram.  Most women hate getting mammograms.  None of those statements apply to me.  I actually thought it was fascinating, though a bit uncomfortable.  My breast was squished in this vice-like machine that produced films that were put into another machine next to it and my insides showed up on a screen across the room.  I could see my port and the line running from it to my heart.  I could see so much.  More importantly, the radiologist that read my mammogram did not see any cancer.  I also had a PET scan that day.  Again, the worrisome spot was cleared, but a new area of concern came to light.  There was slight activity in my right axilla (medical speak for armpit).  This time, it was decided that my body had been through enough monthly scans.  The area of concern was probably nothing so we would wait about 6 months for another PET to confirm the nothingness.  Everyone was fairly confident that would happen, but I couldn't shake that cloud that was still stalking us.

August 7, 2012 ~ All of my doctors agreed that I was probably in the clear so it was decided that my port could finally be removed.  It had been in me for 16 months and had saved me more pokes than I could possibly count.  I wanted to be happy with this apparent finish to everything cancer related, truly I did.  By this time, the cloud was winning more days than I was.  Again, life goes on and I did my best to go along with it.  Tyler turned 9 in August.  Charlie turned 1 in October.  My hair was growing back in.  I was overwhelmed by guilt for not enjoying every moment.  That's what cancer people are supposed to do after treatment.  We know what is really important and what isn't.  We aren't supposed to give any attention or importance to the bad things in life.  According to what is supposed to happen, I was failing at moving on after cancer treatment.

November 16, 2012 ~ I had my last appointment with my medical oncologist that had been with me through so much.  Dr. Dax informed me that he had accepted a position with some national organization and would be leaving his practice.  He assured me that my upcoming PET would finally tell me that I was free of cancer.

November 30, 2012 ~ The day of the PET was finally here.  I got a call a few days later to schedule a biopsy.  That slight activity had grown instead of disappearing.

December 10, 2012 ~ Biopsies suck for so many reasons.  The worst is the close quarters, the expressions on their faces, the fact that they know how this will turn out but can't tell you anything because the tissue that was just yanked out of you needs to be tested for actual confirmation, the forced calm and cheerfulness that they use to hide what they know.  Biopsies suck.

December 12, 2012 ~ I had been looking forward to my 40th birthday for decades.  I love numbers and number patterns and my 40th birthday was on 12-12-12.  Instead of enjoying my birthday, Eric and I dropped the kids at my parents' house and drove up to the Springs to have two different doctors tell me that the biopsy had confirmed that my right axilla had breast cancer cells.  Happy Birthday to me! 

December 20, 2012 ~ I got a fancy new port inserted.  Apparently they had come a long way since I got my first port, a whole twenty months prior.  Dr. Sharon, my surgical oncologist from before, used the same place as the first time and cleaned up the scar tissue there.  It looked so much better after the port insertion than before, and now it is barely noticeable.

December 21, 2012 ~ This was the last date on the Mayan calendar and there were all sorts of people worrying about the world ending.  On my calendar, I wrote "It's the end of the world as we know it!" with a smiley face after it.  It was the end of the black cloud of unclear scan results and the beginning of hope.  I could finally do something other than sit and wait.  A plan was forming and I was starting to be a part of the decision making process.  My new medical oncologist, the replacement I was stuck with after Dr. Dax left, was not inclined to treat this diagnosis aggressively.  She didn't think there was much hope.  I insisted that Dr. Borges, up in Denver, be consulted.  I insisted that we treat this with the goal being my survival.

December 26, 2012 ~ I had my first, and hopefully my last, breast MRI to get a clearer picture of where the cancer was.  The MRI was awful in every way.  I almost stopped the scan multiple times.  I, honestly, don't know how I made it through.  I am not claustrophobic in the normal sense.  Small spaces don't bother me, unless there is a loud or repetitive noise.  For instance, I hate small bathrooms where the fan and light are controlled by the same switch.  I just can't take the fan noise and chose to leave the light off even if it is pitch black.  MRI's are all about loud, repetitive noise and cramped spaces.  It just went on and on and on.  Because it was a breast MRI, I was lying on my stomach with my breast in a cup-like thing.  They put a mirror below my face, at an angle, so I could see out into the room (like a periscope).  The mirror was small and had been bumped.  It made me feel sea sick to look into it.  If I closed my eyes, my head felt that it would burst with color explosions from the sound.  The sounds were basically torture for me.  I've attempted to describe the sounds before, and I just can't get it to sound awful enough.  Take every loud, repetitive sound you can think of (fire alarm, sirens, etc.) and put them all together.  Every time I thought it was more than I could take, they would add another sound to the mix.  It was beyond awful.  With no breast tissue left, I assume that I won't have another breast MRI.  I can only hope and pray that I won't have to have an MRI for some other body part in the future!

January 4, 2013 ~ It was a New Year and I had a new chemo teach appointment.  This time we were going with Carboplatin and Taxotere every three weeks for six cycles.  This time I wasn't pregnant, so I could have the Neulasta shot to help my immune system.

January 9, 2013 ~ We had one last fun family adventure with a field trip to Castle Rock's YMCA which has a mini indoor water park.  I was truly able to enjoy this day, with no dark cloud hanging over.  Cancer was back in our lives for sure, chemo was about to start again, at least one doctor thought that I had no future, but none of that mattered.

Apparently, there will be a part 3 (at least) to this timeline. 

Timeline, part 1

My first real deadline for the book is coming up in 11 days [8 now, it took 3 days to get this written].  The beginning of my chapter should have my basic timeline from diagnosis to final treatment.  I have written this timeline out on many papers at many doctors' offices, in one way or another.  When I first read this requirement, I kind of shuddered because of the clinical feel of it.  I decided that I am going to do this in as un-clinical a way as I can.  I don't get to put in the emotions on a medical timeline.  I don't get to put in what appear to be minor dates, medically, but not minor to me.  I'm starting with as detailed a timeline as I can.  I will work that down, eventually, somehow, into a chapter intro.

Fall of 2010 ~ I felt a lump in my left breast while taking a shower.  I used multiple reasons as excuses for ignoring that lump.  After moving across country; I hadn't found an ob/gyn yet.  I was only 37; lumps don't mean anything at 37.  I wasn't even old enough for a mammogram.  Our insurance was pretty lousy; we decided to wait until the new year and the start of a new deductible.  All of these reasons were completely logical at the time, but are completely pitiful when looking back!

February 2011 ~ I was finally ready to get the lump checked out, but SUPRISE!!!  I think I might be pregnant!  That threw a bit of a wrench in, well, everything!  In case you've never been pregnant, ob/gyn offices like to wait until you are a certain time along in your pregnancy before seeing you for your first ob appointment.

March 14, 2011 ~ I finally had my first ob appointment.  I got to listen to Charlie's super strong heartbeat and see her little peanut self.  I was told that her estimated due date was Nov 1st.  I really liked my new doc.  I was excited about this new life!  Everything was smiles all around.  Then, I brought up the lump.  My ob was convinced that it was nothing.  She scheduled a breast ultrasound, just to be sure.  Mammograms aren't generally done on pregnant women. 

March 17, 2011 ~ St. Patrick's Day has always been one of my favorite holidays.  Prior to having children of my own, I went all out in my classroom.  Tyler and I made a leprechaun trap the night before.  Eric and I trashed Ty's room, turned the milk green, and placed green footprints on his bathroom mirror.  I was still in denial that anything could possibly be wrong.  Later in the day, I went in for the breast ultrasound.  That was the first time I learned to read medical professionals' faces.  They didn't seem to think it was nothing and decided to schedule a biopsy.  This was the first holiday that was touched, and tainted, by cancer.  Almost five years later, I still have a hard time getting excited about St. Patrick's Day and many other holidays. 

March 18, 2011 ~ My husband's 40th birthday was celebrated, but my heart wasn't completely in it. We were excited about the baby, but also a bit overwhelmed.  It had been 8 years since we'd done this whole thing and we were quite a bit older this time. I was a big ball of stress waiting for the biopsy.  I was busy trying to protect everyone from what might be coming and hiding how terrified I was.  This was the first of many family birthdays that cancer messed with.

March 22, 2011 ~ I was 8 weeks pregnant and was getting a needle shoved multiple times into my breast to remove tissue to check to see if I had cancer.  On medical forms, this date would be followed by the word "biopsy".  My ob was still convinced that the lump was nothing.  I was told that someone from her office would call me in a few days with the results.  I entered my first period of waiting for results.  If I'd only known how much I would grow to hate these waiting periods.  I'm not sure if I got the call on Wednesday or Thursday, but the person who called did not give me results.  She told me that my doc changed her mind and wanted me to come in to the office for results.  At the end of the phone call she told me that I should bring someone with me to the appointment.  My ability to remain in denial was crumbling.

March 25, 2011 ~ I woke up that Friday morning knowing that I had cancer and knowing that my baby would be ok.  I was filled with God's peace about the baby.  There is no other explanation.  I did not have that same peace about how this would all work out for me, but I knew that our little peanut would be just fine.  My Mom went to the appointment with me because Eric didn't think he could get out of work.  He ended up getting there, so both of them were in the room with me, my ob, and a surgeon that I had never met.  I can't remember the words that were used.  I remember that everyone, other than me, was crying.  I remember being told that I would most likely have to chose between my life and my baby's life.  I remember being told that I should schedule a mastectomy with this general surgeon as soon as possible.  I remember fear.  I spent most of that weekend thinking about having to choose between my life and my baby's life.  On Sunday I found the website to Hope for Two:  The Pregnant With Cancer Network.  I read stories about women who had not chosen one or the other, they chose both.  I read so many stories of babies that had survived their mom's cancer treatment.  Many of these babies were not babies any more.  In short, I found HOPE.  I threw off the fear and decided to look past our small town doctors. 

March 28, 2011 ~ I made a call to one of two doctors in Colorado Springs, an hour away, that were recommended by someone.  I can't remember who recommended them.  I can't remember asking for recommendations. 

March 28, 2011 ~ Eric and I sat down to tell Tyler that he was going to be a big brother.  He had wanted a sibling for so long.  We also told him that his Mommy had cancer.  He didn't know what cancer was.  We explained that cancer cells were attacking my healthy cells.  His first worry was that the cancer cells were going to attack the baby's cells.  He is such a compassionate kid.

March 30, 2011 ~ I met Dr. Sharon, a surgical oncologist, for the first time two days after making that call.  She sat down with Eric and I.  She cried with us, but also offered hope.  She also felt that I needed surgery as soon as possible.  Much later I found out that her office has quite a waiting period for initial consults.  I was seen in two days and had surgery two days after that. 

April 1, 2011 ~ April Fool's Day is not a good day for a mastectomy; not that any day really is.  I woke up and truly wanted it to all be some horrible practical joke.  Instead, we drove an hour an half so that I could have a left, modified radical mastectomy.  I was 9 weeks pregnant.  The tumor that was removed with my breast was larger than my baby was at the time.  Part of the surgery included the removal of all of the lymph nodes that could be found in my left axilla (armpit).  I also had a port inserted below my right collar bone.  I spent one night in the hospital and came home the next day with a part of me missing.  I did not handle the recovery all that well.  I hadn't had much time in the 7 days from diagnosis to surgery to really let it sink in that I was pregnant and had breast cancer.  Sitting around, unable to do much, I had time to go through some of those stages of grief.  I know that I hit a few of them more than once!

April 9, 2011 ~ Ty had a soccer game.  Eric coached it.  This one doesn't make it onto any of those medical forms, but it is important to know that life continues even with a cancer diagnosis.  I was still homeschooling our 7 year old son.  He still had Saturday soccer games and twice a week practices. We attempted to give him as normal a life as possible.  There is no big pause button you get to push when your life gets turned upside down.  Life goes on. 

April 11, 2011 ~ I got my drains out.  If you've never had surgical drains, you can not understand the immense relief that comes from getting rid of those things!!  I also had my first appointment with Dr. Dax that day.  Dr. Sharon's office hooked me up with him.  Much later I found out that he had an equally long waiting period for initial consults.  I was playing the Pregnant With Cancer Card, and didn't even know it.  Dax was confident that we could treat this cancer, save my life, and keep my baby safe.  He was consulting a doc in Denver about my case, and he wanted me to go up and meet her.  My case was also discussed at tumor board meetings.  I felt like I was in good hands and started to just go along for the ride.  I was the good patient and did what I was told.  Dax told me that my cancer, triple negative breast cancer, was the best kind to have while pregnant because hormones don't have an effect on it.  I didn't educate myself beyond that, which is so strange for me.  I just did what I had to do.

April 15, 2011 ~ I went in for genetic testing.  Mom came with me, which was great because she was able to answer family history questions so much better than I could.  At some point later on, we learned the results.  I am negative for both BRCA1 and BRCA2.  Being positive for either would have explained a bit more about why I had cancer at such a young age.  Being positive for either would have put my children at a higher risk for developing cancer, especially Charlie.

April 19, 2011 ~ I met Dr. Borges.  She is a medical oncologist that specializes in young women's breast cancer.  She has treated many pregnant women.  My tumor went to a study she was doing.  This appointment made me want to move to Denver.  Her area of the hospital, the breast center,  is right down the hall from the ob/gyn area.   The other end of that floor has a midwifery department.  If you had to have breast cancer while pregnant, this felt like the place to be.  The two and a half hour drive each way seemed a bit too much, but it was quite tempting.  On the way home, I had my first appointment at Horizon Prosthetics.  Prior to this, I had no idea that the removal of a breast is treated quite similar to the removal of a leg.  Mandy, the owner of Horizon, is an amazing person.  She made me feel almost comfortable getting fitted for a foam breast prosthetic and bras to hold it. 

April 25, 2011 ~ I had an echocardiogram.  Chemo can mess with your heart, among many other things.  This was a baseline in case of a problem in the future.  So far, I have not had any heart issues.

April 25, 2011 ~ My second trimester started.  I was 13 weeks pregnant.  At this point many chemotherapy drugs are considered safe during pregnancy.  The placenta is an amazing organ that protects the baby and these chemo drugs are too large to cross the placenta.  The body is an amazing creation, isn't it?!?!

April 28, 2011 ~ This was the first of many long days of hopping from one appointment to another at Memorial Central in Colorado Springs.  I started in their high risk maternal/fetal group, then I met the radiation oncologist that Dr. Dax wanted me to use, next I had a several hour long chemo teach appointment, and finally I met with Dax's NP.  It was also the first of many days being told that I was in the advanced maternal age bracket just hours away from being told that I was "so young" for breast cancer.  All of my various docs communicated regularly about my case and I settled right into doing what I was told to do.

May 8, 2011 ~ This is another date that doesn't make it onto any medical form.  This is also one that I haven't talked much about.  It was Mother's Day.  It was also the day before my first chemo.  At church, our pastor talked about mothers and all that they do.  At no point did he say that mothers should pump poison into their pregnant bodies, especially not a poison designed to target rapidly dividing cells.  Logically, I knew that I was doing all of this for the baby as well as for my son.  I was doing it in the hope that they would have a mother for a long, long time.  Logic did not win out that day.  Guilt did. 

May 9, 2011 ~ I had a liver ultrasound, for the same reason as the echocardiogram two weeks prior.  Then I went and sat in that chair while they pumped that poison into my veins.  All I wanted to do was run away and hide.  Instead I sat there, holding my husband's hand, tears pouring down my face, and put all of my faith and trust in God and the medical people that He had put in my path. 

May 12, 2011 ~ Ty had a standardized test that I had to get him to.  Seriously, life goes on whether we are ready for it or not.

May 27, 2011 ~ I had my second chemo infusion.  The first four of my treatments were Adriamycin and Cytoxan, better known as A/C.  Adriamycin is better known as the Red Devil.  This infusion was a bit easier than the first, but it was still incredibly hard.  By this point my hair was falling out and I was actually starting to look pregnant.  What a combination!

May 30, 2011 ~ This is another date that won't make the medical forms, but is easily in my top 10 for worst days.  It was Memorial Day.  Eric had to work.  My parents were out of town.  Tyler had a high fever and a sore throat.  I could not be around Ty because my immune system was at a very low point three days after chemo.  Everyone local we knew was gone or had kids that we didn't want to infect.  I couldn't comfort my sick baby because I had to protect myself in order to protect the baby inside of me.  That day was pure torture to me.  Once Tyler was able to get to the doctor, he was diagnosed with strep throat.  I should learn to let it go (let it go, let it go) because Tyler doesn't even remember that day.  (I wish I could say that the guilt never bothered me anyway!)

June 11, 2011 ~ This was another yucky day!  By now, I have come to terms with all that happened.  At the time it was right up there, near the top of that list.  It was my first Walk for Hope, the major fundraiser for Orchard of Hope, the cancer support agency for our small town and our county.  Eric and Ty were on a church trip to the Sand Dunes.  I thought I'd be fine by myself at this event.  I was incredibly wrong!  Walking around visibly pregnant and quite bald was rather uncomfortable, but I was starting to get used to that.  Walk for Hope always ends with a balloon ceremony.  The balloon ceremony includes the reading of names of people who have died from cancer.  The list seemed to go on and on and on.  This was the first time I was forced to come to terms with the fact that I had something inside me that killed people.  Lots of people.  Later that day, I went to a party with people from our church.  I was not the most pleasant person to be around and I am sorry for that.

June 14, 2011 ~ We learned that Charlie was a girl!  We also got to see her on the first of many 3D ultrasounds.  I had to be in the Springs three different days that week for different appointments.  It was around this time that I learned how to play the I-live-out-of-town-and-I'm-pregnant-and-I'm-going-through-cancer card.  Actually, I was beginning to learn how to advocate for myself.  I was learning how to ask for things to be done in a way that worked better for me.  Most doc offices are willing to be flexible, all you have to do is ask.

June 17, 2011 ~ My third trip to the Springs that week was also my third chemo.  During pregnancy, chemo wasn't too hard on me.  I was one of the only patients in the infusion room that actually wanted to eat.  In fact, the hospital food was just too bland for me.  Eric would go out and get some Mexican food and then we would share both the hospital food and the Mexican (the spicier, the better!).

July 2, 2011 ~ Remember that life goes on, right?  Well, it was swim season and Ty was competing almost every weekend at a pool anywhere from an hour to three hours away.  This Saturday, the meet was just under an hour away.  The deck of that pool gets rather slippery, and I fell.  Bald, pregnant, and clutsy!!  Luckily, all was fine with both of us.

July 11, 2011 ~ This long day started with an ultrasound and appointment at the maternal/fetal group, followed by an appointment at my med onc's office, and ended with my 4th chemo which was my last A/C treatment.  Stacking appointments made for very long days, but it was so much better than multiple trips in the same week!

Aug 2, 2011 ~ This was one of the scariest days we've endured through this whole thing.  I had my first Taxol infusion.  I had an allergic reaction to the Taxol.  This treatment was the only time I was assigned to one of the two little private infusion rooms.  Those rooms had a bed instead of a chair, so fancy!  They also had their own bathrooms!  Not long after the Taxol started, I felt like I was going to throw up.  I decided to get out of the bed and walk the three steps to the bathroom in order to throw up there.  As soon as I stood up, my whole body locked up and the world started spinning.  The spinning was like turning cartwheels at 60mph.  Eric pushed the little magic button and the nurses took over.  They stopped the infusion and were finally able to get my body to bend so that I could sit down.  Eventually, everything calmed down.  I had to go up to maternal/fetal and get checked out.  Charlie was fine, I was fine, so we started the infusion again.  This time the Taxol was just put into me very, very, very slowly.  Did I mention how slow it was?

Aug 9, 2011 ~ At this point, life was settling into a routine.  It wasn't what most people would consider normal, but it became our normal.  Taxol was weekly, unlike the A/C.  Every Tuesday, we would drive up to the Springs in the morning for a bit of pinballing around between pregnancy appointments and cancer appointments. 

Aug 28, 2011 ~ My little guy turned 8.  We did our best to give him a special birthday.  By this point, my energy was pretty tapped out.  Oh, I love that kid so much.  Sometimes I get so mad about what cancer has taken from him; how cancer messed up his childhood.  He was such an amazing kid during treatment.  He was always trying to make things easier for me.  He took on so much.

Sept 9, 2011 ~ Things were starting to get serious on the baby front.  I was 32 weeks pregnant.  I was still doing the all day marathon of appointments on Tuesdays, but now we were adding a second non-stress test on Fridays.  Luckily, my docs set it up for me to get this done at our local hospital.  This day was the first of those and the hospital staff really did not know what to make of this incredibly pregnant, incredibly bald, woman.  It was rather amusing. 

Sept 12, 2011 ~ I met Dr. Stageburg for the first time.  He would become my radiation oncologist when the time was right.  He practices in Pueblo.  Radiation treatment for breast cancer is daily, generally for 5 or 6 weeks.  I had decided that the road to the Springs, while beautiful, was too windy and mountainous for daily trips in upcoming Colorado winter.  Pueblo is about the same distance, but the road there is straight and flat.  It was a good decision!  Later that evening, I was preparing to walk out the door to a cancer support group meeting.  When Tyler asked where I was going, I answered something about cancer survivors.  I can't remember the wording, but I will always remember his next question.  He stopped me in my tracks with "If there are cancer survivors, are there people who don't survive it?".  I did not walk out that door.  I stayed and we talked and cried and hugged.

Sept 18, 2011 ~ We had a baby shower.  It was so surreal to me for some reason.  It was amazing and wonderful, but I didn't feel 100% there. 

Sept 20, 2011 ~ This was my last chemo infusion while I was pregnant.  My body was showing some signs that I needed a break.  I was 34 weeks along.  We had originally planned for a C-section at 39 weeks and they weren't sure that I could hold out that long if I had any more treatments.  It was quite exciting, I actually got to just be pregnant for a few weeks. I still had to go up to the Springs for maternal/fetal checkups and blood tests for my oncologists, but no more chemo!

October 11, 2011 ~ I was 37 weeks pregnant.  While getting ready to head up to the Springs for my weekly maternal/fetal check up, I knew that I wasn't coming home.  My body had just had enough.  They kept doing different tests.  Each one came with the disclaimer that if I passed, I could go home.  I passed each one, but just barely so they would decide to do a different test.  Eventually I was admitted.  It was actually a relief.  Eventually, the C-section was moved up from two weeks away to two days away.  They did what they could to get both of us ready.

October 13, 2011 ~ Charlie was hardly ever cooperative during the multiple ultrasounds.  She had her hands over her face when they wanted to measure her facial features.  She had her legs crossed when they wanted to see if she was a boy or girl.  There were times I had to jump up and down in the exam room to try to get her to shift position.  She was head down for the majority of the pregnancy, but turned to head up around the beginning of October.  She wasn't about to let the C-section go as planned!  Sometime in the wee hours of the morning, I realized that gas pains shouldn't be happening every 15 minutes or so.  The night nurses didn't take this seriously.  My water broke, but I was on the toilet so it couldn't be tested.  They didn't really believe I was in labor.  I kept trying to convince them, but apparently I didn't say the right things.  Finally, they found the contractions and started the process to move the surgery a bit earlier.  I told them that something felt wrong, that there was something between my legs that didn't belong there.  Finally, they checked and saw that her little feet were sticking out!  Everyone woke up at that point and things progressed quite quickly.  One of my favorite movies is The Princess Bride.  There is a scene where Fezzik, played by Andre the Giant, hollers "EVERYBODY MOVE!" and the crowd parts.  That is what it felt like as I was being pushed at a run through the hospital corridors lined with sleepy people holding their morning coffees.  I was in a panic because I wasn't prepared for a vaginal birth.  During the short period where we knew I was pregnant, but didn't know about the cancer, I had looked into a VBAC.  Our small town hospital does not allow Vaginal Birth After Cesarean and we had decided that driving out of town for each appointment and the birth was too much.  (If only we'd known!!)  Once the cancer treatment was in the mix, it was decided for me that I'd have a C-section.  This was another time that I didn't learn what I should have learned in order to advocate for myself.  Since then I have met several women who went through treatment and had a vaginal birth.  My panic had to do with the fact that I had not prepared for this at all.  Instead, they just performed an emergency C-section.  I was still slightly filled with panic, and even attempted to yell at the anesthesiologist that he couldn't use my left arm because of my lymphedema.  He wasn't thrilled with my helpful suggestion.  Right about this time, I heard my favorite Certified Nurse Midwife say "Get your ass out of my way!"  That is the last thing I heard before I went under.  Once I heard her voice and heard how confident she was, I was able to relax and let the medical people do their things.  The next day, that same CNM came to visit us.  She came in my hospital room, and sat on my bed.  I don't know if that explains much, but I was just so comfortable with her.  I told her what I'd heard and she was quite embarrassed.  She thought I was under when she'd said it.  She explained that there was a nurse that was standing where she needed to be, not doing much of anything.  She politely asked her to move several times, just to be ignored.  She was scrubbed in so couldn't touch her.  Instead, she did what had to be done.  I explained how reassuring it was to hear her and to know that someone I trusted was there taking charge.  Just a few minutes after I was put under, our little Charlie Michelle came into this world.  At only 4# 14oz, she was so tiny and so perfect. 

[I'm going to stop this post here.  It is insanely long and I've only gotten to Charlie's birth.  I guess there will be a part 2, at least.]

Change

This will be my third post for this blog.  The first post was read by two friends.  The second has only been read by me.

I have a FB page for this blog.  It currently has two likes, one of which is mine. 

This is my blunt way of pointing out that I have not shared this blog or the FB page.  Part of me just wants to keep this to myself and to work everything out on my own.  That part is overruled by my desire to educate.  (I will get to the educating, really I will!)  Part of me is scared.  For the most part, I was very honest about what my diagnosis and treatment were like.  I started out that way with the aftermath of it all, but gradually I clamed up.  There is so much inside me that I need to get out.  I am scared that it will be too much for people.  I am scared that my friends won't want to read it.  I have enough vanity that I am scared that I will have no one reading my blog.  It is much easier to just not let anyone in. 

Being vulnerable, being open to rejection, is part of the letting go that I have to do this year.  I have to do this for my sanity, for my kids, for my husband, for my happiness, and for so many other reasons.  I read something on FB today that sums up what I've been doing this year:
"More than just feeling like a bad person, the labeling made it harder for me to connect with people. I’d meet somebody and wonder whether the look in their eye meant they thought I was a bad person. About a year or more of that and I just wanted to stay away. I’d become like Lucy, running off to the bedroom. All the scare tactics were working. I was being driven out of community. Like I said earlier, when we don’t believe we are good or lovable, we isolate." - Don Miller in Scary Close

Please don't take this the wrong way.  I don't blame anyone.  I don't think anyone, other than me, did any labeling.  I have isolated myself.  With the second diagnosis, with all of the unknowns, I put a label on myself.  I have an expiration date.  Why would anyone want a friend with an expiration date?  A friend of mine told her sister about me when we were becoming friends, right around the time of my recon surgery.  Her sister asked her about becoming close to someone that will probably die early.  She said that it was scary, but she also said that it was worth it.  I only focused on the first part of her answer.  I convinced myself that it isn't worth it for others to be my friend.  I have driven myself out of my community.  I have isolated myself and I am so very lonely.

I know I'm not the only person feeling this way.  I get such an emotional lift when I read about someone who has gone through what I'm going through.  It is amazing to know that I'm not the only one.  Part of my reason for sharing all of this is the hope that some day, someone will read this and not feel so alone.

Apparently I am a sucker for quotes right now.  This 3rd post was supposed to be my timeline for treatment, etc. for the intro to my chapter of the book (go read the first two posts if you have no idea what I'm talking about).  Instead I am making myself incredibly uncomfortable.  I am going to share this post, this blog, and the FB page with my little corner of the world.  

The way I've been doing things is not working.  I want so much to change.  So here goes!

(Ugg - I just reread this and it totally sounds like I'm asking for a pity party.  Please don't do that!!  I'm not.  I need to work so much crud out to get my head on straight.  This is honestly where I'm at.  I am lonely.  I have isolated myself and I hate it.)

Deadlines

I started this blog three weeks ago and I have published nothing in that time.  Those three weeks have been a bit busy with my birthday (which also happens to be the three year anniversary of my second cancer diagnosis), a nasty head and chest cold that led to an ER visit for a CT scan, my kiddos each having a stomach bug, Christmas, New Year's Eve, and today - the first day of 2016.  During that time I've been thinking about the blog, even if I haven't added anything.

Over the past few weeks, I've been forced to realize how much depression (or something similar) has taken from me and from my family this past year or more.  I'm not going into details in this writing, just want to put it in black and white that I am going to make some changes.  I don't know if I am strong enough to do this, but I am going to try.  I love this quote - "Strength shows not only in the ability to persist, but in the ability to start over."  I have felt the need to start over for quite a while now, so why not take this new year to actually do so?

I've decided that I'm going to use this space for more than just my chapter in the book.  I'm going to try to keep "cancer stuff" here and on the FaceBook page I started to go with this blog.  I'm going to attempt to distance my regular FB page from CancerLand. 

My chapter in the book has to be a priority because it has deadlines.  Everything else will be worked in around those deadlines.  That is the plan, at least.  Most things in my life don't go as planned, so we shall see what happens!

Deadlines used to be motivational to me.  Deadlines used to be good things.  Now, just the idea of meeting these deadlines terrifies me and makes me want to give up.  I really want to do this.  I really want my story to be told.  I really want someone to be able to read it and receive some hope.  When I was first diagnosed, when I thought that I would have to chose between my life and the life of my baby, I found some stories online that filled me with hope.  I want to pay that forward.

In order to offer hope in this book, I need to meet some deadlines.  Here they are:

January 10- All contributors are finalized, chapter focus' are decided on.

January 15-Chapter Intros (The beginning of each story will have your basic timeline from diagnosis-final treatment)

January 31st - You have notes and ideas organized of how you want your chapter to be written.

Feb 16 - First (very) rough draft complete

February 28th - Draft has now been self edited and edited by a peer.

March 1st - Content edit

March 15th - Pictures for your chapter (nothing copyrighted)

April 1st - Ready to submit for first professional edit
-----

I think I've met the first deadline.  I'm fairly certain that I want to be a contributor and I'm pretty sure that I want my chapter to focus on education.  Now I just need to get rid of the indecision and make this commitment. 

Let's try that again.  I have met the first deadline.  I want to be a contributor and I want my chapter to focus on education. (Totally freaking out here with a strange mixture of fear and excitement!!!)

Deadline #1 complete nine days early - woohoo! 

The next deadline is the chapter intro, starting with a timeline.  My next post will be the timeline for our extended visit to CancerLand.  If I include everything, that timeline gets a bit long.  I've had to do something similar for new docs, etc.  I sometimes get slightly overwhelmed just looking at my timeline!  It should be interesting to put it all together.

I have a blog.

I am an educator. It is just what I do. It is who I am. It does not matter if I am in a classroom, walking through a zoo, catching up on FaceBook, or taking a hike with my kids - I feel pulled to educate. It is irrelevant that I have not stood in front of a classroom for more than six years. I am an educator.

I believe in the power of knowledge. One of my favorite quotes is by Baba Dioum and says "For in the end, we will conserve only what we love. We will love only what we understand. We will understand only what we are taught." 

In my opinion, this concept goes down to the core of our being and the word "conserve" can be replaced with all sorts of verbs - protect, remedy, change, sustain. It just depends on the circumstances. I think this is where the Breast Cancer Awareness campaign has gone wrong. Too much misinformation has been spread around for the general public to understand and believe the truth. 

Prior to March of 2011, I knew very little about breast cancer. What information I did have, was basically propaganda from the Awareness campaign. Breast cancer is easily treated. Early detection saves lives. Yearly mammograms starting at age 45 prevent breast cancer. Breast cancer can be tied up with a pink ribbon. I was aware of breast cancer, but I had no real knowledge. 

During the past 4+ years, I have gained more knowledge about breast cancer than I ever wanted. Being who I am, I have attempted to educate along the way.  I've done it, mostly, in a quiet way.  Talking to those who will listen.  Sharing on FaceBook.  Often, I am saddened and frustrated with the lack of true breast cancer knowledge out in the general public.  I tend to forget that I used to share in that ignorance.

I have an opportunity for my story to be a chapter in a book.  What a way to educate!  That book will be read by more people than I will ever have a chance to have a conversation with.  What an opportunity! 

Each chapter in this book will have a theme. When I was asked if I knew what theme I thought my story would focus on, I was stumped. I briefly considered backing out, even though I was extremely excited about the possibility of this book being published and truly wanted my story to be in it. It took me awhile, but I finally realized that I want education to be my theme.  In all honesty, I probably want education to be the theme of my life.

I had no idea how to get started writing my chapter. I've never done anything like this. A couple days ago, while reading a friend's blog, it occurred to me that writing a blog would be a good way to get started. I plan to use this space to get my thoughts out and organized. Of course, I hope that it can be used to educate at some point.  I never thought that I would have a blog, but here goes.