• Elle's World
  • Christmas Letter 2017

    Merry Christmas once again from the House of Elle. It has been 7 years since I’ve written a Christmas letter. Of all years this is the one that certainly deserves a wrap-up.

    Elle, The Trusty Husband and the Boy were excited to bring on 2017. The previous year was a slow decline into an end of year dumpster fire. 2016 could fuck right off for all we were concerned. We rung in the new year with our traditional cans of MGD. Only this year instead of constructing his usual fortress of solitude the boy elected to build an airplane out of said cans. We only found that slightly odd, but I suppose one has to break with tradition at some point.

    January found Elle touching herself rather frequently. It also may have included the phrase, “babe, feel my boobs.” Not one to argue, the Trusty Husband obliged. At this point you are thinking… “Elle, you have a strict rule about not discussing your sex life.” At that you would be correct. I wasn’t feeling myself out of loneliness, trust me. Although with the drunken haze from the previous year one can never be to certain that body parts are still attached.

    After a thorough inspection of my boobs the Trusty Husband agreed that 1) yes, they were still attached and 2) there was a little extra something something going on there. He felt a second opinion was needed. Thus began the year of, “Hey, feel my boobs.” No seriously. Have you felt my boobs? Because everyone has.

    The second opinion agreed that there was, in fact, a little something something going on. Tests, needles, boob smashing, more people feeling my boobs and BAM!




    Hey let’s take a trip!

    Dumpster fire + Cancer = Bali. So we went.

    As we boarded the plane the Trusty Husband and I took our seats with the unwashed masses. However, the boy felt that he’d used Flight Simulator enough to know how to fly the plane. Much to his chagrin the Captain wouldn’t give up his seat and felt the boy was better suited to sitting with his parents. We strongly disagreed. There were some nice people 16 rows in front who could have him. Pre-Teen and all. Bali was great. There was aforementioned pre-teen with a fever on a 12 hour flight. There was cranky pre-teen in a forest full of monkeys. There was sick husband in bed. There was Elle yelling at any travel company that would listen to try to get sick husband home. Finally there was disgruntled pre-teen on the flight home because he couldn’t look out the window.

    Since the trip was so awesome we are going back next year.

    We managed to max out our health insurance out-of-pocket on exactly January 15 so we decided that everyone needed as much medical work done as possible. If cancer of the boobs wasn’t enough, the Boy had is tonsils removed and the Trusty Husband had part of his face shaved off. We were hoping that the tonsil removal would also cut down on the boy’s jabber mouth. That didn’t happen, but he does snore less.

    In April we had to take a break from “feel my boobs.” Some doctor came along and cut them off. However, in May a different doctor came along and started making the fake ones bigger. That set off a whole new round of “feel my boobs.” The game is rather fun. Elle regularly asks total strangers to feel her boobs.

    In June all of Elle’s hair fell out. We all know how much Elle loved her hair. Let’s move on.

    In July the boy demanded that his parents make amends for the center of the plane fiasco as well as not being able to fly the plane debacle. The parents gave in and shoved the child onto an airplane alone and shipped him off to California to see his aunt for a week. Later in the month they shipped him off to another aunt’s house where she said, “have at it kid,” and let him fly a plane. Now she’s the cool one and his parents are nothing but trolls that force him to clean his room and eat a sensible breakfast.

    In between the two airplane episodes the House of Elle road tripped to Arizona to vacation on a goat farm. Elle quickly discovered that goat milking is not in her skill set. The boy also announced that he would be saving his money to fly back to the goat farm next summer. Alone. The child would rather do hard labor on a goat farm rather than clean his bedroom.

    The trusty parents decided that the boy needed a little extra “discipline” in his life. Not the smack on the ass kind of discipline, but the clean your GD room kind. They enrolled the child in the Civil Air Patrol. The child gets to fly airplanes and mom is happy because the long haired emo pre-teen had to cut his hair.

    The House of Elle hosted a few parties this year. Most of them involved Elle greeting guests with, “It’s so good to see you. Feel my boobs.” Not ones to be rude party guests the friends felt her up. Elle’s little black book is fuller than Barney Stinson’s.

    October found the trusty parents upgrading to the TEEN model of the child. Odd year models are always full of bugs. This one is no exception. The 13.0 model came with special bonuses such as sassy asshole and leaves shit all over the house. We’ve tried to unplug the device, but there seems to be a long lasting battery back-up. This particular teen model also comes with a female companion unit. The independence feature is nice, but also requires the parents to regularly take the female companion unit home from the mall.

    This Christmas we will mostly celebrate at home. We told Grand-dad that he was going to sun therapy in Florida this year. Really it’s just an expensive way to not go to church on Christmas Eve. On Christmas Day Elle and her siblings will switch out Uncle Bob’s oxygen tank for a helium one and give Aunt Penny too many rum balls just to see what happens.

    The House of Elle wishes everyone a very festive Christmas and New Year. May your days be merry and high and may your boobs be softer than Elle’s.

  • The Cancer
  • 295 days

    I sat down last night, right before bed, and thought, “is it really here.” Tomorrow is the last day.

    That tomorrow is now today.

    It has been exactly 295 days.

    295 days since a radiologist walked into a tiny little room and said, “I’m afraid I have not great news.”

    Everything before February 15, 2017, will forever known as “Before This.” Everything after December 7, 2017, will be known as “After This.” The in between… That was cancer.

    My dreams last night were a mixed bag of everything I’ve experienced in those 295 days. The constant battle with the boy for not picking up after himself. The fear that the cancer really isn’t gone. Walking into today’s appointment and my doctor abandoning me with more questions. A hurricane (the emotional gravity of everything I’ve experienced). And yes… cheeseburgers.

    Over the past 295 days I have had both breasts removed. I have had my body pumped full of highly toxic chemicals. I have had 1/2 of my chest burned off. I have come to realize that it is not the cancer that we survive, but rather the treatment. There were many days that I would have gladly given up. There were days that I silently begged for the cancer to just take me because the pain was too great. Then I would open my eyes and see these two remarkable men looking at me and willing me to live. Their eyes showed pain and worry. Worry about what it would be like with only two instead of three, or one instead of two.

    I pressed on.

    I’ve now come to After This. I’m starting on the upward swing of grief… I hope. I’ve been at the bottom of it for so long I’m not sure there is light up there anymore. What light there is will be so much different that the light on the other side of that chasm of grief. I’m not the same person I was Before This. I listen a little more intently and talk a little less. I watch the details in life a little more closely. I take every moment in and savor it.

    Today my life-line of fighting is cut. I’m on my own. This journey isn’t over, but the active fighting is done. I’ve reached the point of armistice with my body.

    I am going to do my best to trust that all of the suffering I’ve endured was for a purpose.

    I’m just hoping that the purpose was so I could sit on a tropical beach with a fruity drink and just be.

  • Plant Teacher
  • The Angry Armpit

    I walked into the cancer center yesterday with a mild determination of, “let’s do this.” Really it was more of, “let’s just get this shit done today because I really have somewhere better to be.” I sat down in the waiting room and reveled in the quiet. It was the first quiet moment I’d had since rolling out of bed at 5:45. When the tech called me back I said, “you know what today is?”

    Her reply was, “it’s Friday!”

    Yes. However the day was so much better than just being Friday. It was Last Bolus Day. The bolus is this brass chainmail looking thing they put over the area of treatment that increases the amount of radiation to the skin and the tissue right underneath it. The result is… not pleasant. I have had 24 rounds of radiation with this thing on my chest and it has cooked my skin to a fine (or not so fine) crisp.

    When I last wrote I mentioned that my skin was starting to turn pink, but that things weren’t that bad. Since then the situation has dramatically changed. Shortly after that point my skin started to get raised and quite itchy. After consulting with the doctor we discovered that I was allergic to the calendula cream they gave me. It was causing hives.

    Solved that problem.

    As the days progressed the skin continued to get angrier and angrier. The pain is odd. It isn’t like the bone pain from chemo or the post surgical pain from the mastectomy. Imagine a toothache, a sliver in your foot and an itch that is impossible to scratch happening all at the same time and you can’t do anything about them. It is the type of pain or sensation rather that causes your brain to function at the speed of when you have to pee really bad.

    In other words, I have no attention to detail at the moment. That is bad for the teacher who was organizing the Winter Plant Sale. Not only was yesterday Friday and Last Bolus Day, it was Plant Sale Day.

    Hundreds of people came through my classroom and greenhouses. I had to manage all of my students all at once, maintain composure, remember to go to radiation on time and remember to eat lunch. The fact that all of that happened and we made money is nothing short of a miracle.

    I sucked it up. I smiled and joked with students. I chatted with parents and staff. I did my best to have fun. All the while my armpit looked like this.

    I got home and took my shirt off to reveal that the white/black looking area had opened up and was starting to peel. It was that moment that I’d had it. I know I only have 4 more treatments to go. The last treatments with no bolus will help my skin. However, in the past 9 1/2 months I’ve been diagnosed with cancer, had my boobs cut off, been pumped full of chemicals and had 1/2 of my chest burned to a crisp. There is only so much a body can take.

    I’d like to think I can celebrate the milestone of being finished with active treatment on Thursday. It will be a momentous day. Then I’ll start passive treatment. 5 years of aromatase inhibitor drugs. I need to have my right expander re-inflated. I need reconstruction on my whole chest that will involve a 10 hour surgery, 5 days in the hospital and 8 weeks of recovery. I’ll need revision surgeries. I have more of this. Thursday is not the end. I’ve still a long road ahead.

    and my GD armpit hurts.

  • Elle's World
  • Where we are in the Life of Elle

    I do honestly apologize for not keeping you abreast (pun actually not intended) of what it’s like to be me.  Each weekend I think I will sit down and write something, but the words fail me.  At any given moment you may find me in a state of extreme mental euphoria or laying in bed sobbing.  It’s not due to me forgetting to take my medication either.  It is just how my brain is working these days.

    I started radiation treatment on October 25.  I’ve completed 10 of 28.  I will go until December 7.  It is taking longer than typical because of days off for holidays.  So far the radiation isn’t terrible.  My skin is starting to turn pink, my side under my left arm is a little painful and I run out of gas at about 7:45 each night.  Peeling myself off the couch at about 8:30 feels impossible some nights.  The thought of walking up 2 sets of stairs to my bed and getting ready for sleep is so daunting.  I do it though.

    Traveling for treatments isn’t horrible.  I am able to go mid-day when there is no traffic.  I can get from school to SCCA and back in about an hour 15.

    As far as the rest of life goes, that’s the up and down.

    I go through my weekly routine.  Get up, drop off the boy, teach, radiation, teach, go home, collapse.  It’s on the weekend that the emotional gravity of my life takes hold.  I never sleep late so on Saturday mornings I get up, make my coffee and peruse the internets.  It is in this quiet time that life feels so full of possibility.  Every Saturday could be anything I want.  I don’t have radiation.  I don’t have chemo.  I don’t have to take the boy to a swim meet.  They are mine.  In this place of mental euphoria I feel alive.  

    By mid-day things oft go down hill.  I start not to feel well due to lack of eating. (There are days when I run out of time to eat or food just doesn’t sound good).  I may have pushed myself a little too far and I get exhausted.  I get a great idea. for a project and then just the mere thought of starting the project wears me out.  The day that started with so much promise ends in disaster.

    Not every day is like that.  

    But many.

    This is why I avoid talking about it.  I could be in that moment of euphoria,  but the thought of what will lay ahead today makes writing feel impossible.

    I’ve spent quite a bit of time reflecting on this whole journey.  The other day I wasn’t feeling well and laid down in my bed.  It was snowing.  I began thinking about all that I’d experienced from this vantage point of my bed.  I watched the trees bloom and grow leaves.  I listened to the birds.  I saw summer come and then watched summer fade.  I watched as the leaves yellowed as autumn approached.  Now I was watching the snow gently and quietly fall.  So long.  So many seasons.  Still fighting.

    There are times it feels like I’ve been fighting for so long.  There are days that the cherries were blooming yesterday.  Where will I be when the Magnolia blooms again?  Will I be laying in the bed once more?  Will I be planting a garden under it’s soft white petals?

    I don’t know and that uncertainty is painful.

    Patience has never been one of my strong suits.

    Today, right at this moment, my day is full of hope.  I have treatment today, but the rest is mine.  I will do with it as I please.  

  • Elle's World
  • One Month Post Final Chemo (PFC)

    It’s nice to know that friends near and far are thinking about me.  Over the past few weeks I’ve gotten quite a few texts, emails, and facebook messages checking in on me.  I sit here each Saturday wanting to post something, but not knowing what to say.  Either I’m too exhausted to think straight or I just can’t come up with words.

    It’s been a month.  Hard to believe.  What have I been up to in the past month?

    First, I’ve been up to my eyeballs in work.  I am teaching 4 different courses this year and one of them is totally new to me and not even in my area of expertise so to say.  I was offered the chance to teach Introduction to Marketing to keep me at a 1.0 FTE.  I took it to keep my salary the same.  I’ve done marketing.  The only challenge was that I never used the vocabulary associated with marketing.  So far it is going well.  The students are fantastic.  It is making me be a more prepared teacher.  

    I also took on the challenge of starting a floral shop at school.  This was totally self directed.  I wanted to make the floral design class more fun and give it a real-world experience opportunity.  If you walked in to my 3rd period class on any given day your brain might leak out of your ear.  My assistant and I feel like that every day.  After the 2nd or 3rd week of our “experiment” we looked at each other and said, “what the hell was that?”  Whatever it was, it was working.  The students work in groups on a 3 week rotation schedule.  One week they do floral shop duties, the next it flower identification and the next is design techniques.  Then they rotate.  We teach the same thing for 3 weeks then switch to a new topic/set of flowers.  You could walk into my classroom and see students cutting floral foam in one area, students on the floor making posters in another and students drawing flowers in a notebook in another.  It’s crazy.

    Finally, my advanced horticulture class has been insanely busy.  I have 12 amazing students and they work their butts off.  We’ve been cleaning the horticulture center, making more plants and doing business planning.  The class is more organized than it has been.  I ocassionally look at our greenhouses and the list of plants and seeds that are coming and think, “hmm, we may not have enough space.”  However, my students are up to the challenge of marketing the heck out of our plant sales.  We are going to make this year’s sales the biggest and best Interlake has ever seen.

    That’s work.  How’s the health?

    I weathered my first illness like a champ.  All three of us got the back to school cold and I think I won the got better fastest award.  

    I’m steadily working on increasing my stamina.  My goal is to walk up to the main building of our school at least once a day.  My classroom is a bit of a hike (up a hill) from the main office.  This week I’ve made two trips on two separate days.  That’s progress.

    I have a bit of cording going on in my left arm.  There are days when I can’t straighten out the arm at all.  I see the physical therapist on Tuesday.  The appointment is for lymphadema measurements, but I am going to talk to her about the cording too.

    I haven’t started radiation yet, but had the simulation appointment on the 29th.  The update from the radiation techs is they have a treatment plan ready and it is going to physics for approval.  Once that is done they’ll have me back in for a verification appointment then radiation will officially start.  I’m scheduled to have 28 treatments over the course of 5 1/2 weeks.  I’ll go over to SCCA Monday through Friday for daily treatments.

    Now the question you really want to know… How’s my hair?

    I know it’s been on your mind.  Be honest.  You wake up every day and ask yourself, “I wonder how long Elle’s hair is today.”  Well let me share.

    September 4 – 2 days PFC
    September 11 – 1 week PFC
    September 28 – almost 4 weeks PFC
    October 4 – 4 1/2 weeks PFC

  • The Cancer
  • Chemo #8: and that’s all she wrote

    One would think I’d be jumping for joy at the thought of my last chemo appointment.  To be honest I’m quite happy it’s over, but the actual infusion is really the easy part.

    Yes, Saturday morning was my last Taxol infusion.  3 1/2 months, 8 rounds, many meds, countless naps, a bald head and numb digits later I’m finished.  No more chemo.  At one point I didn’t think I would make it this far.  After the 2nd round of Taxol I wanted to give up.  The side effects were so bad that the thought of having to get up the stairs to go to the bathroom made me cry.  So when I woke up Saturday with the thought of, “this is the last,” it wasn’t as joyful as it should have been. You see, I still had to go through the pain.

    I’m now at day 5 in this cycle and feeling somewhat better.  I couldn’t work yesterday and would not be an effective teacher today so I took the days off.  A good portion of my right hand is almost totally numb.  The bottom of my right foot can’t feel much.  I still get shooting pains in my legs and arms.  This is a good day.  Tomorrow will be better than today.  The next day better than that.

    Throughout this journey I learned what limits I will go to to survive.  I’ve learned that there is always something worse than what I’m feeling right now.  I’ve also learned that when I feel good I need to live life to its fullest.  The people in my house were my support network.  They cheered me up at my lowest points.  They listened when I didn’t want to have cancer anymore.  They remind me on a daily basis that a good friend is worth fighting for.

    I also could not have gotten through this without an incredible partner by my side.  Derek sat with me at every appointment.  He held me when I cried and reminded me that I had no choice but to get through it.  I am so grateful to have someone like him.

    So what’s next?

    Friday I meet with my Radiation Oncologist.  We will start working on the plan for radiation treatments.  I’ll need to do 6-7 weeks of daily treatments.  The side effects will be nowhere near as bad as chemo.  I can expect some fatigue and there is the possibility of skin burning.  Truth be told I’m most afraid of radiation.  This will be chest wall radiation on the left side.  They’ll be radiating near my heart.  There is always the potential for damage to the heart or lungs.  I trust the techs and doctors, but I’m still scared.

    In good news, I do get my port removed on the 13th.  My oncologist asked me when I wanted it removed and I said as soon as possible.  The 13th it is!  It will be nice not to have that cockeyed lump in my chest anymore.

    So onward and upward.  This whole journey is nearly complete!

  • Elle's World
  • Chemo Round #7

    Same ol’ chemo drug, different round.  

    I keep telling myself, “only one more to go.”  The nurse warned me that my side effects would be cumulative as Taxol went on.  I believed her.  I thought my most major side effect would be fatigue.  Oh darn, more naps.  There was this glossed over, something about pain, shouldn’t be too bad.


    Fortunately the pain subsides somewhere around day 5 of each round.  However the evening of day 3 going into day 4 sucks.  Each round my goal is to avoid the heavy pain killers.  I just can’t do it.  

    My intention is not to give updates that spend the whole time whining about how terrible all of this is.  It’s just part of what life is like right now.  At the end of the last round I was feeling great!  I think I did some stuff outside.  I’ve been preparing all of my classes.  Wholly unremarkable really.

    In other life news…

    I start back to work on the 24th.  A full day of meetings.  Fun times.

    The boy has started a new activity.  He joined the Civil Air Patrol.  This leaves some people scratching their heads.  I’m not exactly known as being the most patriotic of American souls.  However, I have a 12 year old who desperately wants to learn how to fly and a bank account that cannot accommodate such a request.  Thus, we learned about CAP.  It is an auxillary arm of the Air Force, but think of it like Boy Scouts with air planes.  The cadets study aerospace and leadership, but also have a military element.  Their uniforms are ABUs or dress blues.  There is a chain of command.  They march, salute and muster.  It is all very formal.

    The ultimate goal out of joining CAP was to learn how to fly.  On the mom and dad love this side of things, there is leadership training and physical fitness goals included.  All three of us are convinced that this is something that will be very good for the boy.  

    Yes, I’m aware his sleeves are rolled incorrectly.  A senior member taught him how to do it correctly.

  • The Cancer
  • Chemo Round #6

    Two more to go!  

    Despite the pain early in round #5 things finally evened out so that I could at least enjoy a little bit of life.  

    Last Tuesday I played the part of a parent and took the boy to a doctor’s appointment.  Rather I should say that I attempted to take the boy to said appointment.  The all mighty keeper of the calendar told me the child had an appointment at 10:15 on Tuesday.  I had a physical therapy appointment at 1:00 so appointment, lunch appointment and we’d be good!  Only we showed up to the pediatrician’s office to be told that the appointment was on Wednesday.  Fun times.  Fun toll bridge times.

    Since we had time and I wasn’t going to drive across the toll bridge multiple times in a day I decided that we would play tourist in our city.  We headed to Pike Place Market.  For the record, the market is completely overwhelming in December.  Now imagine a sunny afternoon in July when a cruise ship is in port.  The only saving grace was it was a Tuesday.  I should also mention that this was day 9 in a chemo cycle; probably not the best time to be pushing my way through a market full of tourists just off a cruise ship. However, I love Pike and I couldn’t pass up the opportunity to stroll through with my favorite 12 year old.  

    We laughed at tourists.  We smelled soaps.  We watched the ferries come in and go out.  We ate Dim Sum (no. Not gluten free.  Don’t give a shit).  We had a great afternoon.

    Later in the week I did a little “gardening.”  I survived the heat and coasted my way to Saturday.

    I woke up Saturday morning feeling ok.  I thought I would be able to walk in confident and say, “hook me up, let’s get this show on the road!”  Not so much.  About 30 minutes before we were to leave I started to panic.  1/2 an Ativan later I was a little more calm, but not looking forward to way lay ahead.

    Bloodwork came back thumbs up so we were a go.  This week’s nurse was lovely and sweet.  She took very good care of me.  The infusion went smoothly.  Derek and I spent part of the time watching The Great British Baking Show and dozing on and off.  Before we knew it it was time to go home.  I was up to a few errands so we stopped by my school for watering and then ran down to Tukwilla to look at fabric for family room drapes.  

    I’m now on day 3 and the pain is starting to set in a bit.  I’m having trouble sleeping so I’m sure a nap is in order this afternoon.  I’m trying to stay on top of the pain this time.  The CBD tincture I tried last time is helping.  I also picked up a Meadowsweet herb to try as a tea.  I’m damn determined to get up and down the stairs with no problems this time.

  • The Cancer
  • Pain Update

    I want to thank everyone for their kind words here and on social media.  Pain is always a scary thing.  I thought I’d give you an update as to how things progressed.

    Thursday was the worst of the pain.  After breakfast I attempted to take an Epsom salt bath.  It often helps with relaxation and the warm water loosens up cramped muscles.  While it was somewhat relaxing (I need a bigger tub) it did very little to alleviate the pain.  Since the pain was in the bones relaxing muscles wasn’t exactly helpful.  I tried more Tylenol and ibuprofen, but they wouldn’t even touch the pain.  

    I could barely stand, but laying down was just as bad.  It was better for me to stay in my room most of the time because there is a bathroom on that floor.  Derek finally took matters into his own hands and made a trip to the local cannabis emporium.  He came home with a high CBD tincture.  A few doses of that finally alleviated enough of the pain that I could get out of the bed and shuffle slowly.

    I find that when I’m feeling exceptionally shitty the one thing I want to do is get out and do something.  I’m sure it is my body’s way of telling me it will get your mind off of this.  I had Derek take me up to my school to pick up some catalogs that I’d ordered from a plant company as well as check on the plants in the greenhouse.  It did get my mind off of things.

    I spent the rest of the evening on the downstairs couch.  We watched a movie and I winced in pain.  Near 9:30 I’d had enough and decided to go to bed.  Getting to bed was a whole different story.  It took a good long while to go up the 1 flight of stairs to my bedroom.  Once I got to the top I decided that sleep warranted the use of some stronger drugs.  I opted for the Vicodin.  A second dose at 2 am allowed me to mostly sleep through the night.

    I woke up Friday feeling much better.  I still had some lingering pain in my ankles, but not enough to prevent me from getting around.  I was able to do some cleaning.  My girlfriends came that evening for a visit.  What a lovely distraction!  I kicked them out around 7:00 and spent the rest of the evening watching The Great British Bake-off.  

    Saturday was even better as far as pain goes.  I spent time outside securing the back fence so the new chickens wouldn’t escape.  We also drove down to Shelton to attend my Uncle’s memorial service.  Riding in the car is not exactly pleasant, but I managed.  

    Through this I learned that days 3 & 4 are going to be rough.  I’m just going to prepare for that.  Should the pain be more intense or last longer than 2 days I’ll bring it up to my team.  I know this is a side effect of this particular drug and there are many other women who have had similar reactions.  I can’t expect chemo to be roses and daisies.  A few days down is manageable.

  • The Cancer
  • Chemo Round #5: I Miss Me

    I never finished my story on our great American road trip.  Here’s the bullet version:

    • I learned how to milk a goat
    • I learned how to make soap
    • We drove to Vegas
    • I was once up about $10, but then lost it
    • I tried a Shake Shack burger.  It was m’kay
    • We drove home

    Now on to the latest round of chemo.

    I was told that this new chemo drug (Taxol) would be easier than the last.  They call the last one the “red devil” for a reason.  I’m having a difficult time deciding which is worse.  With AC the main side effects are nausea and fatigue.  I finally got an anti-nausea med that really worked.  Other than one really bad day round #4 was tolerable.  The major side effect with Taxol has been pain.  I spent so many years prior to my hysterectomy in pain that I never wanted to go back there.  The pain then was an every day constant thing.  Taxol reminds me of that.  I’ll get to that in a minute.

    Let’s talk infusion day.

    Monday was my infusion and I needed to be to SCCA by 7:00 am for labs.  The infusion appointment was set for 9:00 am, but I was called back by 8:30.  Labs looked good so everything was a go.  The pre-meds for this drug included a steroid, Zofran for nausea, a heartburn med and Benadryl to combat the myriad of other problems that could happen.  Apparently a number of people have reactions to the carrier fluid the chemo drug is in.  

    The chemo drug was set to infuse over 3 hours.  It is run slowly just in case there is some kind of reaction.  Of course I wouldn’t be me if I didn’t have some sort of adverse reaction to whatever drug I’m given.  About 1/2 way through the infusion I started to get a slight pain in my wrists and feet.  Any changes warrant a stop in the medication and a consult to the oncology nurse.  It was agreed that they’d stop the chemo for a bit and see if the pain subsided.  It did a little, but the word came to give me more Benadryl and slow the infusion down even further.  The pain went away, but of course the additional Benadryl made me even more tired.

    All in all, the whole process took nearly 7 1/2 hours.  I’m fairly certain that the rest of the infusions will take just as long.  Fun times.

    So back to that pain thing.

    The rest of Monday I was mostly ok.  Tired, but ok.  Tuesday I spent working on planning for my floral design class and was just fine.  By Tuesday night I started to get a bit of pain in my legs.  It was difficult to get up and down the stairs.  Wednesday morning was a whole new story.  The pain had set into my legs and feet.  It also comes and goes in my arms.  I took Tylenol and Ibuprofen and managed physical therapy and an appointment with the oncology nurse.  She informed me that the pain should only last the first 24-48 hours.  By the time I got home and had lunch yesterday I needed a nap.  The nap ended up being 2 1/2 hours long.  I woke up in more pain, took more Tylenol and this time no relief.  The pain increased so much that in order to attempt to get some sleep I had to resort to the narcotic pain killers.  That bad.

    I was hoping that things would calm down this morning, but it isn’t looking good so far.  I still have pain from my hips to my feet and ocassionally in my arms.  I’d like to avoid the narcotics if at all possible, but am willing to bite the bullet if need be.

    I’ve been living with this cancer thing for over 5 months now.  I still have a long way to go, but it is wearing on me.  I’d like to think I have a positive attitude, but really I’m a little pissed off.  I’m angry that I have to go through this.  I’m angry that it is affecting my relationships.  I’m angry that it is affecting my quality of life.

    I miss being able to do what I want when I want.  I miss waking up and being excited for the day.  I miss being independent.  I miss me.