12 Month Wrap-Up (rap, wrap, wrap-up)

Girls Night

January
Started off like any other year.  New Years was spent at our friends Matt n Chelsea's playing board games and eating good food.  Shac and I made the resolution to try a new restaurant each month and stuck to it.  Mickey and I had a girls night at the Shark Tank.

February

Never too old for a Mickey pancake

As I do every year, I visited Disneyland with my good friend Ruth.  Little did I know this would be my only trip to Disney this year.

March
Passover was a little early this year.  Shac and I traveled south to Los Angeles to spend the holiday with his family like we always do.  A few days painting nails with nieces, a visit to the Getty Museum, stuffing ourselves with sader food and smacking each other with green onions is a great way to spend a holiday.

April

Shac and I took another trip to visit more family.  This time to New York and New Jersey for Great Uncle George's 100th Birthday! Not only did I get to meet this exceptional man, and hear stories of watching Babe Ruth play at Yankee Stadium, I got to meet the entire New York side of Shac's family.  We even had time to see Pippin on broadway and visit with my college roommate Rayna.  It was a quick but very packed trip.  My third graders and I also visited the Terra Cotta Warriors.  Close up they are amazing, still have paint from centuries ago.

Uncle George's 100th Birthday

May
May was spent preparing for our summer trip.  There was much time spent online booking visits to the Vatican and trips to the travel agent.  As we neared the end of the school year we had many special events including the walk-a-thon and Greek Plays.  Hillbrook became my home and I was pleased to be asked to participate in the Resident Teacher Program in the coming year.

Eiffel Tower- Paris, France

Western Wall- Jerusalem, Israel

Cinque Terra, Italy

June
For the first time in three years, my hair went back to purple!  Shac and I traveled to Israel so I could meet the other side of his family.  After two weeks of seeing historical landmarks and Shac's homeland, we flew to Italy.  In Italy we spent time in Rome, Florence and Cinque Terra.  We would go back in a heartbeat.

July
We ended our month long middle east and Europe trip in France.  Taking the train from Italy, we first stopped in Nice and then onto Paris.  After such a long trip we were both happy to come home.  Two weeks later, I was in Las Vegas for a math conference, no really, it was for work!  We also rescued and cared for a humming bird named Barry.  He drank sugar water from a shot glass, he was pretty precious.

One kidney, and a popsicle

August
Ernie's 13th birthday, his Bark-Mitzvah, was eclipsed with excruciating side pain on my part.  This lead to one week later the removal of my left kidney and the large tumor that was growing on it.  August 2013 is a month in which my life changed.

Audrey, Jaden, Myself and Noelle- Pre Chemo party

September
September 4, 2013 Peripheral Neuro Ectodermal Tumor, related to
Ewings Sarcoma.  Cancer.  The tumor that had been removed from my kidney was cancer that would lead me into 17 rounds of chemotherapy.  After quick mow-hawk, and a blowout party with my students friends and neighbors, chemo began on September 23, 2013 and will last until approximately August 2014.

Rosie the Riveter

October
The Boston Red Sox won the World Series.  I had a second round of chemo and started living with side effects, including my hair falling out.  I also had one of my most favorite Halloween costumes ever, Rosie the Riveter.  This was inspired by my recent baldness, my love of history, and recent stories on the local news of the oldest park ranger in California upset by the government shut down who works at the Rosie the Riveter National Historic Park in the east bay.  I gave out extra candy to the high school kids who knew what my costume was, and peeps to my neighborhood kids.

Sweet potato latkes and cran-apple sauce

November
The first month I had two rounds of chemo, which made it pass rather quickly.  Luckily, between rounds I felt pretty good and was able to celebrate 'Friendsgiving' with the Apple Bunch.  To celebrate 'Thanksgivanukkah' I made sweet potato latkes, with a candied topping as well as crane-apple sauce.  It was the first time I got to see many of my friends since my baldness, so it was bitter sweet, but good to get out of the house.  I spent actually Thanksgiving in the hospital and brought pie for my Canadian nurses.  We celebrated Hanukkah with our friends Jeremy and Carolynn eating pot roast and too many latkes, it was delicious.

Shac's Birthday Pizookie

December
As we wrapped up the year, there was much laughter.  My grandpa was in rare form at Christmas, with inappropriate jokes and stories we are pretty sure weren't true.  Shac and I spent my his birthday over a homemade Pizookie and mine in Santa Cruz riding the roller coaster and eating cotton candy.  

We look forward to 2014, as it brings an end to chemo and a return of normal life in the fall.  Until then, I will work on my resolution to make an album out of our wedding pictures, a resolution I share with my friend Caitlin.

On the upswing

Woo, that last round was a doozy!  Just by using the word doozy y'all should know I'm feeling more myself.

This must be the new normal; while in previous rounds I felt mostly myself three to four days later, this round took a whole seven days to feel mostly normal.  In that long recovery, mostly fatigue had me not feeling myself.  I wasn't tired enough to sleep, or awake enough to do more than a load of laundry, or wash a few dishes before needing to sit down and rest again.  Not enough focus to watch TV and surf the web or play a game at the same time.  Since I'm not a medical professional I can only assume the fatigue I was feeling was a lack of white and red blood cells.  Just showering, digesting or using the restroom used all of my available energy.  The cold snap here in northern California was also fighting against me, nightly temperatures have been below freezing for about six night straight.

This week, I'm feeling great.  We are now above freezing at night.  I've also been lucky enough to enjoy many walks with wonderful friends over the past week.  Walking in my neighborhood has been a staple of my feel better routine, luckily my friend Caitlin lives about three blocks over and has regularly been taking me for walks on Tuesdays.  Often joining us is our friend Gayle who is due to give birth to 'Peanut' any day now.  As the weather and my stamina have improved, my buddy Mr. Chris and I went for a hike at one of my favorite places Rancho San Antonio- we visited the goats and Luna the cow at Deer Hollow Farm.  Today, Maria and I ventured around Vasona reservoir.  I've gotten cards and visits from many of my old students after school this week too, which has been awesome since it is a bad time of year to visit any school campus.

One of the most amazing things that happened this week was a visit from my professors Sandy and Joseph.  As they were coming down from Oregon to see some student works in the east bay, they realized crossing a bridge to see me wasn't too much further.  Though I wasn't quite feeling my best, sharing time and tea with those who acted as my surrogate parents for four years reminded me how important the bonds students make with their teachers are, and the bonds teachers make with their students.  They braved the biggest snow storm Eugene has seen in 20 years to get here, and I am thankful for it.

I've cooked and cleaned and am looking forward to crafting before I head back into the hospital on Monday for round five, the last round of 2013.

Rough Round/Chanukah

It is to be expected now and again.

This round was hard on my body.  I felt nauseous several times in the hospital and asked for more medication.  My blood transfusion was three bags instead of two, because my counts were so low.  I did not have the energy to do much, and there were a lot of visitors given the holiday week.  Since I got home on Saturday morning, I've pretty much been in bed, thank you internet for keeping me entertained.  Thank you anti nausea medication for keeping me from feeling super crappy.

It is ok to not feel great.  With chemo it is expected and normal.  For me, I just have to remember that no one expects me to be 'on' 100% of the time, we have substitutes and understudies for that.  I can stay positive and be inspiring without being 'on.'

Here are my thoughts:

My sister came up.  It was the first time we had seen each other since we think April, when I was down her way for Passover.  She saw my bald head and kidney scars for the first time, as well as me hooked up to machines while toxic chemicals pumped into my chest.  As kids we didn't always get along,  we are much better as adults.  She had kidney issues through college, being hospitalized a few times for kidney infections.  We always thought I'd give her a kidney.  Sorry, I'm keeping the one I've got.  Usually, there is family time where we are in a loud room full of people not listening to each other and we roll our eyes with our cousins, not this year.  If I keep feeling good, and we are able to stay on schedule, then I will be able to go to her wedding in March.  Sorry if I look so much different from the other bridesmaids, at least I get to be there.

The first three nights of Chanukah I spent in the hospital.  Since you cannot have an open flame in a hospital room, I borrowed and purchased 'alternative menorahs.'  One was from my friend Gayle, who lent me a little blue bear with LED menorah; pushing a button on his foot activated the light for each night.  What was extra nice was that it felt like Gayle was also there to keep me company along with her bear.  The other was a wooden one purchased at Target, the menorah is to be put together and a new wooden flame added with a dowel each night, fun for kids and I thought cute.  

Hopefully, before the end of these eight nights I will feel up to frying latkes.  I have loved latkes since first grade when my teacher did a cooking project for every major holiday   Since I didn't grow up Jewish, this is the first time I remember having them.  When I was 17 and got my wisdom teeth pulled just before my birthday, my parents asked what I would eat, I responded with 'Latkes!'  Each year our friend Ken hosts a blowout holiday party, Mock-a-bration, celebrating all the winter holidays in a mocking way.  The first Mock-a-bration I attended was void of the crispy, squishy, oily treats I loved as a child, I determined that someone needed to make latkes.  Since then I enlist the neighborhood kids to help me peel the potatoes, and then I schlep my cast iron skillet to Ken's backyard to fry latkes late into the cold December night.  I will miss it this year, but hear there are others willing to keep up my tradition.

As the roughness of this round passes, I'll put my holiday spirt on craft mode.  Things need to be made!  And making things always makes me feel better.

Logistics

I've gotten many good questions about my treatment plan.  It feels like time I explain how all of this works.

My cancer diagnosis is Peripheral Neuro Ectodermal, PNET for short.  It is related to Ewings Sarcoma which is a bone cancer.  PNET is a soft tissue form of Sarcoma, and where do we have soft tissue in our bodies?  Everywhere.  I call it soft tissue sarcoma.  For me, it attached itself to the kidney, which is actually very fortunate, because you have two kidneys and only need one.  If it had attached itself to say my calf muscle, or stomach that would have been very challenging.

Since soft tissue is everywhere, I will be having 17 rounds of chemotherapy.  This is very aggressive, many breast and testicular cancer patients I know have had seven or less rounds of chemo, because their cancer is localized to one specific body part.

I have two different chemo regimes.  Let's just call them A and B, it is hard to remember all the names of medications.  I switch between the two regimes every three weeks.
For A round: I am in the hospital for three days.
For B round: I am in the hospital for five and a half days.
I always start on Monday morning.

Each chemo cycle is 21 days, three weeks, a round being the part I spend in the hospital.  The timing is fairly similar for the two regimes.

Week 1:  Day 1: I report to the hospital, check in, situate my room, and get checked by the doctor to see that I am healthy for chemo.  THEN the medication is ordered.  Usually this process takes 3-4 hours.  After that, pre medications and fluids are administered, and about two hours later I start chemo.
Days 2-3 or 5: Chemo, hospital visits, sleeping, really wonderful nurses.  I loose my appetite, not sure if it is more the meds or the lack of tasty hospital food.  If you come visit me and want to bring me food, I will be eternally grateful.  Please just call first, as I loose my appetite about 30 hours into chemo.
I either get released from the hospital on Wednesday night or Saturday morning depending on the round.
24 hours after end of chemo: white blood cell booster shot.

Week 2: I am home, gradually feeling better, and in a sort of quarantine they call the Nadir period.  This is when my white blood cell counts are low and I am most susceptible to illness.  I feel very tired and lethargic, with a low appetite.  I am supposed to stay six feet from people at all times.  I am allowed to hug my husband, which makes me happy.  He has to wash his hands and brush his teeth a lot so I don't get bacteria. This is the week I feel the majority of my side effects, knock wood, they have been mild!

Week 3: By about half way through week two, I feel awesome and want to go out and be me, but I can't for safety.  In week three I can!  I hug people, eat out, see friends, go to the movies, cook food to freeze for the week ahead, bake for the nurses, shop for supplies and get my labs drawn for the next round of chemo, which starts the following Monday.

That is chemo, every 21 days for 51 weeks.  We are already in week 7 of 51.  Believe me when I say it is going fast.

I am not allowed to ever be in crowded places, like Disneyland, a hockey game, baby shower or birthday party.  

When I go to the store, I use cart wipes, and hopefully go with someone else so they can touch things for me.

I have a new found love for FaceTime!  It is really the only way I can see my students this year, and is nice when you are in a limited contact situation for a long duration of time.

Nurses are amazing!  I feel like I have new friends.  And these friends do things like check my toilet behaviors, draw my blood and in one case catch vomit.  I am already thinking of ways, besides my regular baked goods, to thank them when this is all over.  People often question why I chose the path to teach, it has a lot less bodily fluids than nursing!

Please keep asking questions, this teacher is happy to answer them.  I am curious by nature and love to keep everyone informed about this interesting process.

Dracula and Halloween

*I talk about blood a lot, so if you are squeamish, maybe skip this one*

I've been feeling good, so I've been busy.

Last round, which was three weeks ago already, went pretty well.  In general, I had less side effects with this second regime of chemo.  I did, however, have to have a blood transfusion.  My red blood cell count got too low, and there is no booster then can give you, so they give you blood.  Strangely, about halfway through the transfusion I started feeling really peppy, but that is what it is supposed to do!  It was just odd that this happened right before Halloween.

Thursday was Halloween and I was Rosie the Riveter.  The whole idea was based on the fact that I've got no hair, and needed to figure out a costume that covered up my head.  Recently on the news our oldest park ranger has been getting a lot of press with the government shut down.  She is 90 years old and works at the Rosie the Riveter National Historical park in Richmond, which is right across the bay.  The combination of the news stories and my baldness inspired a pretty good costume I must say.  Red head scarf, blue coveralls, a workman's belt and a whole lot of makeup, done.  I was in those coveralls all day, and if you have ever worn a one piece outfit, you know what a pain in the butt it is to use the restroom.  Needless to say, I did not consume much to drink.  This came to haunt me on Friday.

Friday I went to go do my regular blood work.  I get this work done every three weeks, just before I start chemo to make sure I am healthy enough and as a base line for the next round.  They can't get blood out of you when you are dehydrated.  I felt fine, but after four nurses, three needles and blood that clotted as it came out, I had had it.  I asked what my options were.  They sent me home to hydrate and try again the next day.  So, Saturday morning after about 12 glasses of water, coconut water, two gatorades and a ginger ale, my blood throughly pumping from my exercise class, it took PJ about 3 minutes to draw my blood.  Yeesh! I will not make that mistake again.

Tomorrow I go back into the hospital for round three.  The medications for this round are pretty hard on me so I'm not too excited, but like I said to a friend this morning let's just get this done and move forward.

Tutu!

Today is the second day of my second round, tutu!

I have two different cemotherapy regimes that will be alternated for 17 cycles, so I am on completly different medications for this round than I was on last round.

This round I have the same chemo medicaions each afternoon for two hours each, and the mesna again for 12 hours.  The first chemo is Etoposide, again light sensitive, this one can effect my heart and is why I had an echocardio gram before I started chemo.  The second is Ifosfamide, this one is the reason I am on mesna again, as it can be very harsh on my already compromised urinary system.

So far my reaction to these medications have been quite different than the first round.  I haven't been hit by lethargy yet.  I have been more irritable and have had a slight headache after the Ifosfamide.  I also had some heart flutters last night.  Because I start the chemo in the afternoon, I am getting doses of mesna over night.  This morning I woke up feeling just fine, Shac said my color had come back too, last night I looked a little peaked.

I'm glad I feel so much myself!  That is actually partially difficult, because it makes me want to be here less and at school or having fun more.  And on the other hand, it makes me know again that this is blip on the radar screen of my life.

There's a Yeti in my shower

*adult inferences*

Ten years ago, I met my hairstylist Jen B.  I was bar-tending in Willow Glen and she enjoyed margaritas.  As any good bartender does, I got to know the people at my bar and found out Jen was an apprentice at a fancy salon on Santana Row.  As I had just graduated from college and moved back home, I needed a stylist, and made an appointment.  She was a wizard with fine hair!  Jen was the first person in my life to tame my cowlicks and give me the wash and go hair I always wanted.  Over the past ten years, I have followed her to four different salons all over the bay area.  I have recommended so many friends to her it is often hard for me to get an appointment.  If you want a great stylist, contact me, I share.  She has dyed my hair hot pink and purple, given me A-symmetrical looks, and even styled my hair for my wedding last year.  Just over a month ago, Jen cut my hair into a mow-hawk, since the general consensus is that I am going to 'kick cancers butt,' I figured I needed the hair to go with it.  She is an amazing stylist, a great friend, and someone who I will miss a lot this year.

On Sunday, my hair started falling out.  It was not at all what I expected, as it was not the hair on my head, but rather, a very specific location of body hair.  *adult inference here*  Yep!  weird huh?

The reason chemotherapy patients hair falls out is because chemo attacks all cells that are meant to divide.  This means not just cancer cells, but digestive tract, reproductive and yes hair.  Basically, the follicles are not getting the nourishment to support the shaft of hair, so they are just sitting in the follicle rather than being held in place.  So every time I run my fingers through my hair, take a sweatshirt off or on, or wash my hair, it comes out.  This does not hurt, I feel no tension like if you pull a hair out, it is like dead skin sloughing off.  My hair is overall thinning, no clumps.

Over the past few days, there has been hair on my pillow in the morning.  Each day in my comb, more and more hair.  A few days ago I washed my hair in the shower, and it was messy.  I looked in the mirror afterword and you could hardly tell anything had come out!  Today, it was as though I had showered with Bigfoot.  When I checked the mirror after, it was a different reflection I saw.  The eighth wonder of the world is coming, something I never thought I'd see, my scalp.

Ding, Ding! Round One

I made it!
First and foremost that should be said.
So how did it go?

On Monday, September 23 at around 9:30am I reported to my local hospital for my first round of chemotherapy.  I had no idea what to expect.  Armed with my husband, t-shirt quilt, ipad and small stuffed monkey I unpacked and got comfortable in the room that would be my home for the next few days.  Nurses came and introduced themselves, I hung up paper cranes lovingly made for me by a former student and her mother.  The nurses explained that my medications would need to be ordered and mixed, my fluids and premedication to begin before the chemo would be started.  We had no idea how long this process would take, and tried to get comfortable.

After lunch the nurses were ready to access my port.  Since I had just implanted on Friday, it was still quite tender and a bit swollen.  After being poked at for about 45 minutes, rubber gloves getting stuck to the glue that kept the incision closed, and two nurses poking at me, I spoke up.  I asked, hopefully as politely as I remember, to wait until my main nurse for the day was back from lunch, as she had already navigated her approach.  Fifteen minutes later fluids and premedications were flowing comfortably into me.  I would be attached to this tubing for the next three days.

A few hours later, as I ate my second hospital meal of the day I received my first chemotherapy medication.  It was a large syringe of clear liquid called Vincristine, and took about five minutes to be given.  It was totally uneventful!  No fireworks, no burning pain, no wooziness, nothing, I ate turkey while toxic medication was pushed into my bloodstream by a perfectly kind woman.  Over the next hour I received my next medication, Cytoxan through a drip.  After the  Cytoxan the next medication was not a chemo but a protective medicine, Mesna.  Mesna is given every four hours for about a half hour and it wraps itself around chemo meds in my urinary system to protect my bladder and kidney from being overly effected by the chemo.  After the first round of Mesna we were already onto the last medication of the first round!  Doxorubicin was given as a 24 hour drip, twice!  It is red, and light sensitive.  While hanging on my IV stand (who's name is Lew) it is covered in a special bag to protect it from the sun.  I could not believe that this crazy concoction didn't feel as brutal as it looked as it went into my body.  After being on it for 48 hours though, it did start to take its tole.

On Wednesday afternoon, 4:23pm to be exact, my Doxorubicin ran out and I was done with my first round of chemo.  My mom came to pick me up, I got to go home and see my little dog Ernie who had apparently been keeping my husband up looking for me for the past few days.  Over the next two days, I had energy to do little more than sleep and eat.  Since I have left the hospital, each day I have felt more myself, gone for a few walks and eaten Thai food.  

Thanks for your patience and concern as I got this first post together.  I have a VERY large team pulling for me.  Two schools, two big families, a store full of containers, Northern and Southern California, and even some of Israel.  Keeping everyone informed individually is hard.   It continues to be overwhelming that this is happening, but I know I am strong enough to handle it.