The Cancer

Yesterday marked AC round 3 for me.  It was another early morning, but not quite as early as the last.  We had to be to SCCA by 8:00 a.m. for labs.  We ran a little late, but it turned out fine.  I’m always so impressed at how amazing the lab techs are there.  I had good blood return on my port line.  In and out easy easy.

Next stop, 5th floor infusion center.  I believe SCCA was smart to put the infusion center on the 5th floor.  It has one of the most amazing views of Lake Union.  Yesterday was particularly nice because the weather here is incredible this weekend.  I watched the boats and sea planes during my short wait and before long my pager went off and it was time to go.

As I walked past the nurse’s desk I saw my favorite “meanest nurse in the world,” Jo.  I love her so!  She hooked me up and we did our thing.

This week my parents joined us so I got the lo down on what is happening with the rest of the family.  In addition to me having cancer, my mother also takes care of her brother full time as well as watches after my grandfather and checks in on my grandmother.  She really should be given a medal of some sort.

This round was much like all the rest.  I did get a headache near the end of the cytoxan, but that happens every time.  I was a little more tired all day.  I took a wholly unsatisfactory nap when we got home.  I enjoyed the company of my family, Jon & Kerstin and Kathou & Paypay.  They came to help me celebrate my birthday.  

41 with breast cancer doesn’t suck so bad when you have amazing friends that will do anything for you.  They also do things like bring gifts that they know I’ll love.  Unicorn lights, bamboo wind chimes and a Belle charm for my bracelet are just a few of the wonderful things I’ve received.  I love you all so very much!!

Friday was also my last day of school for the year.  The school year doesn’t officially end until June 27th (longest year evah), but I know I won’t be feeling well enough to teach Monday and Tuesday so I took them off.  My advanced horticulture students gave me a lovely little basket of snacks and we had a laid back day.  My intro students worked their butts off helping to clean the greenhouses.  There’s still a ton to do, but I know it will get taken care of to the best of everyone’s ability.  Besides, it gives me something to putter around with over the summer.  Most teachers want to get the hell away from school during the summer.  I have greenhouses to manage and cabinets and offices that still need cleaning.  I like the quiet.  When you inherit a program from a teacher that taught for 23 years there is a lot of things to go through.

All in all the start to this round isn’t bad.  Give me a few days and then ask me how I’m feeling.

Friday was Chemo Round 2.  Unlike last time I didn’t have all day to sit around and fret about it.  This time I had to get up early to be there by 7:30 a.m..  We got situated and in walks a nurse who says, “Hi!  I’m Jo and I’m the meanest nurse here.”  

I replied with, “I’m a high school teacher.  Give me your best shot.”

We got along great.

This round was just me and Derek (and mean not-mean nurse Jo).  I’m sure the rounds are extremely boring for Derek, but he brings his iPad and entertains himself.  He’s also in charge of the playlist.  This round was Sgt. Peppers and Macklemore.  The man knows me so well.  I’m lucky that we have private rooms for infusion so that we can do things like laugh and joke and play music and the guy across the hall can sleep.

Breast cancer patients talk about “the red devil.”  Adriamycin is this drug.  It’s one of the most potent chemo drugs out there.  It also happens to be red.  It’s always unnerving to see this stuff running through the IV line.

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This one doesn’t bother me so much.  I’m sure if I didn’t have the copious amounts of pre-meds I’d be one unhappy camper.  They cytoxan gives me a headache near the end of the round.  That I don’t like.  Because of this they have to give it on a 1 hour drip instead of the 30 minute.  Meh… gives me more time to draw.

After infusion Derek and I celebrated by having some lunch at a place I’m not supposed to eat, Serious Pie & Biscuit.  He told me if I was a good little cancer patient he’d take me out for a treat.  I didn’t complain so I got pizza and a biscuit.  We’d planned on sharing a pizza with a soft yolk egg on it, but me and eggs… we’re not buds right now.  That’s great because we have 6 baby chicks in our garage right now.  Good thing they won’t start laying until next spring.

We had time to waste before picking up the boy at school so I told Derek we needed to go to the Bellevue Botanical Garden.  It’s one of my favorite places.  It was beautiful.  I’ll share photos another day.  Chemo, lunch and a nice walk finished me off for the day.

So far this whole chemo thing isn’t horrible.  As long as I continue to eat and nap and take my meds I’m pretty good.  My biggest side effect is fatigue.  Well, that and my hair started falling out Friday afternoon.  Today it is falling out with a vengeance.  I may bite the bullet and shave it off.  I just have to work up the nerve to do it.

Next round is on a Saturday.  June 24th.  2 days after my 41st birthday!  Lucky me.  Happy birthday, here’s a little more poison in your system.

If I had a dollar for every time someone told me I look great I could probably pay for my cancer treatment without insurance.  Ok, not that many times, but you get the picture.  On a daily basis someone asks me how I am.  My typical response is, “I’m good, but I’m tired.”  It’s pretty true.  At school I get around almost like I used to.  That first day back last week was rough, but after that I’ve done pretty well.  There was that one moment in the greenhouse where I did have to have a student help me back to the classroom because I almost passed out.  I blame that on the fact that it was really hot in the greenhouse because the swamp cooler wasn’t working and I’d over dressed for the day.

Let’s forget I said anything (mom).

To be quite honest I am doing really well.  My nurse practitioner even said so.  I had an appointment with her today and she almost seemed amazed at how good I looked.  I know this may not last, but I’m going to take the win.

I contribute my feeling good (and looking good) to a few things.  The first is my students.  It is the end of the school year and they are all bonkers crazy by this point, but I still love them.  I told one to quit being a smart ass today and his response was, “It makes me who I am… It’s part of my CHaaaarm!”  This from a kid who isn’t always the happiest. I loved it.  

I also attribute feeling good to taking care of myself physically.  I’ve been trying to make every calorie I eat count.  I do throw in an occasional cupcake on account of my boob fund.  It isn’t a good idea to mix alcohol and chemo either.  So I’ve stopped drinking.  All of these things have contributed to me losing a little bit of weight.

The sun being out doesn’t hurt my mood either.

Overall I’m doing good.  At least for now.  Ask me again after round #2.

 

One guarantee from this chemo thing is that I’m going to lose my hair.  The question is when.  To make it a little more fun than just dying my hair rainbow colors I’ve decided to start a pool.  Here’s how this will work:

My first chemo date was May 26.

You pick a date (or two).  You can pick when my hair starts to fall out and/or when I’m forced to shave it.

Throw down some money using our handy paypal donation button and leave your dates in the comments ON THIS BLOG POST NOT IN FACEBOOK!!

1/2 the total money collected will be donated to Seattle Cancer Care Alliance (SCCA) and the remaining 1/2 will be split between the winners.

Post your dates and donate by Friday, June 2.  As the dates happen I’ll announce them here.

Current Pool Amount – $50.00

Have some fun, maybe win some money, do some good!

May 29 –

May 30 –

May 31 –

June 1 –

June 2 –

June 3-

June 4 –

June 5 –

June 6-

June 7 –

June 8 – Rachel L. (Starts falling out)

June 9 –

June 10 – Rachel L. (Forced to shave it)

June 11 –

June 12 –

June 13 –

June 14 – Gretchen L. (Starts to fall out)

June 15 – Lee M. (Starts to fall out)

June 16 – Renee M. (Starts to fall out)

June 17 –

June 18 – Lee M. (Forced to shave it)

June 19 –

June 20 – Gretchen L. (Forced to shave it); Jan B. (Starts to fall out)

June 21 –

June 22 –

June 23 –

June 24 –

June 25 – Renee M. (Forced to shave it)

June 26 –

June 27 –

June 28 –

June 29 –

June 30 –

July 1 –

July 4 – Jan B. (Forced to shave it)

I really am tired of writing posts that seem sad, but I’m trying to share some of the hidden realities of this whole journey.  However, this week has been a bit rough.

Monday was fantastic!  It was the first day in weeks that I felt like myself.  I spent the majority of the day in the garden weeding.  There you go.  A positive.

On Tuesday the week made that down hill turn.  I had an appointment to have my port placed for chemo.  Since there were no openings at SCCA I had to have it done at UW Medical.  It was a much more involved process that took much longer than it should have.  I waited in the radiology waiting room for over an hour.  The “surgery” was fairly quick with no complications.  I slept in recovery for about 2 hours then went home.  

Wednesday it was Jenny’s turn to take me for a boob fill.  The PA asked if I wanted to wait since I’d just had the port put in.  I want to get this whole fill process over with as fast as possible so I said to go ahead and do it.  I started to feel tension at 50ccs, but again in the essence of time had her go up to 60ccs.  In hindsight this was a very bad idea.  A VERY bad idea.  By the time Jenny and I got back to the car and on the road our plans of grabbing a coffee or something else just flew out the window.  I needed to get home as soon as possible.

Jenny got me home and helped me get into bed right as I burst into tears.  The pain was reminiscent of immediate post surgery pain.  I mistakenly took Tylenol which ruled out the use of narcotics for the next 6 hours.  It was so bad Derek contemplated running down the street to our local pot shop for herbal relief.  A 2 hour nap helped somewhat, but not quite enough.  I did sit on the couch for dinner, but went right back to bed.  There was very little sleeping that night.

Thursday was somewhat better as far as pain goes.  Being up and moving around helps for the most part.  My friend, Rachel, took me out to get my nails done again and we were planning on doing a little shopping.  It ended up that Derek needed us to come home for some help.  I was managing the pain relatively well until it was time to go to bed.  Last night’s “sleep” involved Tylenol PM at 3:00 am.  This morning’s pain level is equally as shitty.  I’m hoping that being up and moving will loosen things up.  As of now this is my view.

I need to mentally prepare myself for the latter half of today.  I am to report to SCCA at 3:00 for additional chemo training.  Then at 5:00 I have a blood draw and at 6:00 I start treatment.  I’m not expected to leave SCCA until 9:30 tonight.

I’m nervous and scared.  I’m mostly afraid of side effects.  I hate being nauseous.  I know my doctors will do everything to prevent that, but I still fear that unknown.  I don’t need extra people there, but I appreciate all of the positive thoughts you can send.

This afternoon I’m going to enjoy the sun.  If my arms loosen up I may try a little light gardening.  I’ll look forward to plans with friends over the weekend.  Most of all I’ll wish this were my view instead.

Sometimes you sit and stare at a screen and wonder where to start.

That is me.  I am there.

Here goes.

Yesterday was my appointment with the oncologist.  It felt like the appointment was so far away while waiting for it.  On Sunday I told myself only a few more days.  I can do a few more days.  Last Thursday I couldn’t stand it anymore and called the nurse navigator to tell me the Oncotype dx score.

Wait… let’s back up.

After surgery there was no clear cut answer as to if I should undergo chemo.  My oncologist sent my tumor out for genomic testing to a specialized lab.  This test sends back what is called the Oncotype score.  It is a a special score that helps determine rate of recurrence in cancer.  According to the company, a score under 18 does not warrant chemo.  A score over 32 does.  

Resume story…

I called the nurse navigator and she really didn’t want to tell me the score because I needed to hear the whole story from the doctor.  I convinced her.  My score was a 27.  Your question is probably what happens if your score is between 18 and 32.  That’s called the gray area.  We were prepared to go into yesterday’s appointment with the doctor leaving it up to us.  I was scared.  I told Derek that I would rather have someone tell me what to do than leaving it up to us.  I was afraid of making the wrong choice.

Lucky for me my oncologist happens to be one of the leaders in breast oncology in the US.  She is part of the team that helps to determine standard of care for breast cancer.  In short, she is amazing.

During our visit she explained the numbers and said that the company’s cut points and the medical community cut points are different.  She explained why they are different.  She was part of the team that set the cut points for the standard of care.  The medical cut points are 11 and 25.  That put me in the category for chemo.

With an Oncotype score of 27 I have an 18% of recurrence if I do not have chemo.  She said she didn’t like that number.  I don’t like that number.  Derek didn’t like that number.  It made the choice easy.

The doctor took her time to explain side effects.  She explained the protocol.  She explained the reasoning.  She spent time with us and we never felt rushed or pressured into anything.

This was the first time a doctor has said, “let’s get things going.”  It felt like there was a sense of urgency for the first time.  If you’ll recall, I received my diagnosis back on February 15.  I didn’t have surgery until April 12.  I didn’t meet with the oncologist until May 17.  Now she’s saying, LET’S GO!!!  Finally.  Time to start kicking some serious cancer ass.

I will start chemo on May 26.  A week from Friday.  They’re trying to find me an appointment to get my port placed.  The plan is for Tuesday.  Then I’ll have my first infusion Friday.  I will have the AC + T regimen.  That is Adriamycin and Cytoxan together.  I’ll do 4 rounds of that.  Every 2 weeks.  Then I’ll do 4 rounds of Taxol every 2 weeks.  The whole thing will take 16 weeks… my whole summer.  I will get 3-6 weeks off and then start radiation.  That will be daily (M-F) for 6-7 weeks.  After that I have to wait 6 months for reconstruction.  I’m planning on that to happen after school gets out next year.

How am I doing with all of this?  I am scared to be frankly honest.  I can handle it during the summer.  However, I’ll have 3 rounds of chemo while still in school and my last round will be the 2nd day of school next school year.  I’m more concerned about taking more time off of work.  I know the purpose and I have the support of my district.  It doesn’t make it suck any less.

I will get through this.  It is only a bump in the road.  Hair… it goes.

Every post-mastectomy patient complains, bemoans and generally despises the tissue expanders.  I am in that class of ladies.  The thought of having to leave these cursed things in for a year is enough to throw me into the pit of despair.  I continually remind myself that this is only temporary.  Try telling that to my body though.

In an effort to make expansion seem not so horrible I invited Raissa with me for my fill this week.  Derek was out of town and I was not comfortable driving to Seattle yet so I needed a chauffeur.  She was all to happy to join me.  The actual quote was, “that sounds new and adventuresome!”  I thought, of all my friends which one would a) be willing to drive me there and b) which one would get the biggest kick out of this process.  RAI!!

The PA that does the fills thought it was awesome that I brought a friend with me.  She explained to Rai what was happening. After the first one was done I looked down and holy cow was there a difference.  Raissa agreed.  From the outside the franken-boobs feel weird.  They’re hard in places, but somewhat squishy in others.  I asked Raissa if she wanted to feel it.  Always game for strange medical things she jumped at the chance.  The PA thought it was hilarious that I’d invite a friend to do that let alone have the friend actually want to.  It was a good laugh on all of our parts.

The process of the fills doesn’t hurt that bad.  I can feel pressure inside.  When she gets to the last 5ccs or so then it starts to become quite uncomfortable.  It isn’t until a few hours after that the pain sets in.  Today the right side is hurting severely.  The pain isn’t so much in the front as it is my right shoulder blade that is killing me.  It hurts to take deep breaths.

There are moments that I wonder if I should have just opted for no reconstruction.  All of this is a pain in the ass.  Although I must say I do enjoy the “cute perky little boobs.”  I might have had those in high school once.

The first photos is a week after surgery.  The second is 3 weeks after surgery (1st fill).  The third is 4 weeks after surgery (2nd fill).  Yes I cut and colored my hair.

I did have a moment of severe depression on Tuesday.  Derek was out of town Monday afternoon through Wednesday night.  I had to drive to Bellevue and back for the first time.  I didn’t eat breakfast before I took the child to school (in Bellevue) so I was very hungry.  I had a bad hot flash in the car on the way home.  I was feeling nauseous and dizzy all day.  It wasn’t until late in the day that I finally figured out it was because I hadn’t taken my allergy medication in 2 days.  In the mean time I was texting and calling people to see if they’d come be with me.  It took having a phone conversation with my mom to calm me down enough to shower and feel a little better.  

During that conversation with my mom she said, “the worst part is over.”  I’d like to think that is true.  However, I have so much more ahead of me.  Chemo is still up in the air.  I have to endure 6 weeks of daily radiation treatment.  I also will have to undergo a 10 hour surgery to actually reconstruct my new boobs.  That involves a 4-5 day hospital stay and another 6 weeks of recovery.  Recovery that involves 2 breast incisions and a very large abdominal incision.  Then there’s revision surgeries and a nipple reconstruction.  This 1 surgery is just the start of if.

I can and will do this.  I have no choice.

Trust me, I’m not always this down.  Most days are good ones.  Today is going to be a great one.  My students are running the school’s plant sale.  I’m so very proud of them!  Hey! If you’re in the area, go check it out.  Personally I think we have one of the best high school plant sales around.

Yesterday marked the 3 week mark.  It doesn’t seem like it’s been that long.  I mark my days by how much longer until I have to go to sleep.  I dread sleep, or rather bedtime.  Laying down in my bed used to be one of my favorite things in the world.  Now it is filled with anxiety and dread.  I am a truly uncomfortable person.  I am a side or stomach sleeper and since the surgery I cannot lay on either without considerable pain.  I can sleep a maximum of 2 hours before I have to get up to use the bathroom.  Most of the time I go into the bathroom, not because I actually need to pee, but because the tile floors are cool.  I get so hot at night.  The hot flashes are the worst then.  I haven’t shut the sliding glass door in our room in 3 weeks.

Early last week I told my surgeon that I would undergo a mastectomy twice compared to a hysterectomy.  She was a little shocked that I would say that.  I am beginning to reconsider those words.  At 3 weeks post hysterectomy I was feeling pretty good.  I had done a little gardening (did that on Sunday).  I was taking very few over the counter pain medicines (still on those on a strict schedule).  I still had a weight restriction (I believe I still have that for another week).  This time around I have more pain on a constant basis.  Today there is a pain on the left side.  In an hour it may be on the right.  Tylenol, ibuprofen and muscle relaxers only sort of mask it.  I still get tired easily.  Yesterday I went out to lunch and to a doctor’s appointment and then came home to sleep 2 hours.

On a couple of high notes… I did drive my car for the first time on Tuesday.  I drove myself down to the nail salon.  That made me feel good.  Sitting in the chair with my arm up on the table was uncomfortable, but I did it.  I also rode with Derek to pick up Oleg from school.  I asked if he would take me over to my school so I can see my kids afterward.  That was wonderful.  They were all so excited to see me. They were hard at work prepping for the plant sale, but took time out to give hugs and take photos.  I love them so.

The appointment I had yesterday was at the plastic surgeon’s office.  It was the appointment for my first tissue expander fill.  It was a rather emotional appointment.  The nurse finally removed the tapes that had been covering the scars.  At that point I was able to get a better look at the skin underneath.  It is difficult for me to look at.  I’ve only looked at myself in the mirror twice since surgery.  I’ve had such a prominent physical feature removed from my body.  While I’m happy that the cancer is gone, I am saddened by this loss.  It is easy for someone to say, “if it were me I’d just say cut them off.”  It was the right decision to make, but not one that comes without mental and emotional consequence.  I am learning how to feel in this new body.

The expander fill did help somewhat.  The process is very strange.  I’ve been stuck with needles so many times I’m pretty used to it.  SCCA and UW use lidocaine to numb the area prior to any stick.  However, there is no feeling where they’re sticking me so no worries there.  The PA uses a little device with a magnet to see where the port is.  Once found she sticks a needle in that’s attached to a couple of tubes and a huge syringe.  She pulls saline out of a small IV looking bag and then injects it into the expander.  As the saline goes in, I can feel the bag inflate and it stretch the muscle and skin.  She goes until it starts to become uncomfortable.  The process is repeated on the other side.  

The nice thing about having the expanders partially filled is that I now have very small boobs.  It also makes things a little more comfortable.  I was able to sleep on my right side last night.  The not so great things is that they are quite hard and slightly uneven.  The doctor does his best to make sure they are in the same spot during surgery, but things don’t always stay put.  The right side sits a little lower than the left.  I’ll need to do a little shopping to find clothes that will draw less attention to that fact.

Three weeks post I’m doing ok.  Not spectacular.  Not horrible.  I’ll get there.