Knowledge

"And I know things now,
many valuable things,
that I hadn't known before.

And though scary is exciting,
nice is different than good.

Isn't it nice to know a lot,
and a little bit, not."
--"I know things now", from Stephen Sondheim's Into the Woods

As I sit in the infusion center getting fluids to protect my kidney, I over hear the nurses discussing a patients orders.
Nurse T to Nurse J, "Why is it a stat order on this blood panel?"
Nurse J, "That's unusual."
Me, "I'm coming in at eight thirty tomorrow morning.  If I need blood, they want to make sure the orders are processed in time for the blood bank to process it for my early appointment tomorrow."
Nurse T, "Oh, that makes sense, thanks Wendy."
----
Ten months ago what I knew about cancer and hospital jargon was anecdotal.  Recently, people watching me go through this process have suggested I become a nurse after I finish treatment.  No.  I do not enjoy bodily fluids, that's why I don't teach kindergarten.  The knowledge I have gained about my treatment and subsequent hospital-isms astounds me.  I can interpret my own blood work, explain unusual orders to my nurses, change the settings on the pump that pushes fluids into my port (though I don't), and I laugh hospital humor.  What good with this knowledge do me in 'real life?' No idea, but in my current state, it is quite helpful.

Along with this information comes too much information.  My care team is large, though I have a primary oncologist, I see a team of six doctors on rotation in the hospital, 20 nurses and different nurses at each infusion center.  On top of which, there are the insurance company people, receptionists, and my amazing support system of family and friends.  I am constantly inundated with getting new information and in my efforts to be a good patient, and make it easier for my medical team, I am trying my best to follow all of the instructions and suggestions.  Sometimes the information contradicts, other times it is hearsay.  It has been challenging to process all of this info, I need help to interpret it all correctly.

Recently, I've felt quite overwhelmed with the amount of work I have to do.  Between chemo rounds, I now go to the infusion center at least twice a week (this week every day) for fluids and blood work. When you are exhausted and trying to feel better, you need time to rest, and I can't rest being at the doctor each day.  Coupled with necessary changes to my daily routine, diet, social life, it is really starting to take its toll on me.

With my new knowledge, work load, and treatment fatigue it is just getting more challenging. It has been an emotional round.  Heck, what I am going through isn't easy, I didn't expect it to be.  There have always been and will continue to be unexpected changes to my treatment and schedule.    My sister wisely reminds me that they say 'practicing medicine' as it is something different for each specific patient and case.  I try to be as patient and understanding as I can be, but it is a lot to take on.  

Round ten has been an informative round.  Challenging both physically and emotionally.  The time I spend between chemo sessions will need to get longer to protect my kidney (Reggie) and allow my bone marrow to replenish my blood.  Shac helped me realize that my goal isn't to finish treatment as fast as possible, but to preserve my health for the rest of my life.  It is a learning process.  Moving through this slowly is still progress.

Ferris Bueller

Two important things have happened since my last post.

My sister got married!  and I got to go!  This is an unusual second in our lives.  My sister, being two years older, had all of the firsts in our lives, first car, first to college, first to try things out so I learned how to navigate them better (thanks).  Our weddings however, were in reverse order, mine to Shac being nearly two years ago.  My dad said my sisters was easier on him emotionally because of this.  It was the first first I had first. 

Their wedding reflected Lauren and Jason's personalities to a T and I am so happy I could share the day with them.  They had such a 'Southern California' wedding to me.  Steps from the beach, and 80 degrees in March.  The ceremony was outside on a patio, dinner being inside a 1930's casino once frequented by the likes of Mickey Rooney and Judy Garland.  The flowers were beautiful and cupcakes moist and delicious.  This was the first time I got to see their local band 'The Creepers,' who I think Shac and I appreciated more than my grandparents, but maybe we just knew their music better.  So glad I was feeling up to having as much fun as I did.

If you look closely at this picture you can see my eyelashes and eyebrows!  I had a wonderful makeup artist at Aveda in the Mission Viejo mall.  She too a cancer survivor, made me feel pretty for the first time in months. I know it was my sisters day, but I was so excited to be pretty and share that her.  I didn't want to be the weird looking one sticking out at her wedding, pictures last forever.  I felt so much better looking normal.  It seems vain to me, but I think it is ok to want to look your best, it does amazing things for your self confidence.  Perhaps the fact I felt like I looked so good allowed me to physically feel better too.

The second thing that happened was chemo mountain!
I'm at the top.  Well, I am actually stepping down as the day we got back from the wedding I went into the hospital to complete round nine.  So here I sit between rounds nine and ten!  Round nine was pretty typical for my short round, three days of chemo,  two bags of blood, left the hospital feeling good with minimal side effects.

The week before the wedding I had all of my midway scans.  The ultrasound of my kidney came up as 'medically unremarkable' you may remember reading.  Next I had a PET scan, this shows how things move and group, specifically in your blood.  The PET scan showed changes in my bone marrow, expected due to how chemo is effecting my blood.  Long story short, my PET scan came back clear!  No accumulations of cancerous cells.  SEVEN MONTHS CANCER FREE.

Your blood is an interesting thing.  I'm only now learning about how your body makes blood, and it is fascinating.  My bone marrow isn't reproducing as quickly as it should, and is not producing hematocrit, a blood transporter, very fast either.  Chemo is supposed to effect my blood production, so this all sounds like bad news, but it means it is working.  It also explains why I've been so anemic and my body can't keep up with blood production.  Learning all of this actually took a lot of pressure off me.  For the past seven months I've been getting more and more anemic.  Here I sat thinking there was something I could do or eat to help my blood.  Nope.  It is so nice to know its not me!

For each post I try to come up with a clever title or theme.  This time it was hard, such diverse things going on!  Often I've said chemo waits for no man.  I don't want to use the blog as a place to complain about what I'm going through, just a place to inform.  Life has continued to move forward with or without cancer.  In November we had to replace a sewer pipe, February my grandfather passed away, in March my sister got married.  I still have at least five months of chemo, who knows what else the universe will throw at us in that time span.  So, in the immortal words of Ferris Bueller, "Life moves pretty fast.  If you don't stop and look around once in a while, you could miss it."

Metaphors

I'm in the weeds
It's ten pounds of stuff in a five pound bag
Let's get the quarterback off the field before he gets hurt
It's a full house!
I'm a quart low
Oh, so your in for a quick tune up?
When it rains it pours
Up a creek

These are all metaphors I've been living lately.

Up a creek
After round seven I got sick.  I had a cold for about a week, but when you are on chemo, a cold isn't a small thing.  I took antibiotics and was monitored very closely.  After I was done coughing, I developed some canker type sores in my throat making it very uncomfortable to swallow.  Canker sores are very common for chemo patients, since all of our mucus membranes are under attack.  There is this amazing mouthwash, developed at Stanford,  that takes away the pain while healing these sores.  It is called 'magic mouthwash' and it is!  Luckily, with the sores being in my throat gargling with this amazing stuff reached it and I could soon swallow comfortably.  

I'm in the weeds
Then we had round eight.  For some reason it was rough on me, really rough.  These medications have always been harsher than the short round, and with receiving them more days in a row my body was just worn out.  In the hospital lots of vomiting, constipation and weakness.  I received a transfusion shortly before discharge, and walked out of the hospital.  The following week the constipation lead to diarrhea, and hemorrhoids.  Coupled with an inability to eat dehydration got worse.  I spoke with my medical foundation nurse every day, went in for blood work and ultimately scheduled a meeting with a nephrologist because we were now concerned about my kidney.  

It's ten pounds of stuff in a five pound bag
I was nervous about this meeting.  Only having one kidney makes me anxious about anything having to do with hydration and I was afraid I now had another life long disease to deal with.  She ordered an ultrasound and I was surprised when they checked and captured images from both sides of my abdomen.  The results read, "Left kidney surgically absent, right kidney unremarkable."  There is nothing better than the term 'unremarkable' when used medically.  After speaking with the nephrologist, who is amazing by the way, I have learned that chemo has injured my kidney.  The filters inside my kidney are damaged because they are being made to filter toxic medications, and they need time to heal.  They are so full of stuff they need time to filter even just water.  She also recommended I change some of my chemo regime and remove some of the harshest medications, my oncologist and I will have to discuss this.  She wants to monitor my kidney more closely, weekly blood and urine tests to check levels. I will be taking a break from chemo, I do not know how long, but I am fine with a break given everything else going on. So, let's get the quarterback off the field before he gets hurt.

Yesterday, I went to have my midway PET scan.  YES we are almost exactly half way through chemo!  Before I started chemo I had a PET scan to see if there was any accumulation of cancer cells anywhere else, and to check my bone marrow.  Though I have gotten results back from this test, as I do not completely understand them, I'll let you know more after I talk with my doctor.

Oh, so your in for a quick tune up?
After my PET scan yesterday I started on my now weekly blood work.  While sitting on the couch later in the afternoon, I got a concerned call from my medical foundation nurse asking me to please get to the hospital as soon as possible to get a bag of platelets because I was low.  I figured I was about a quart low.  No problem, my dad hurried me down there with my iPad and a bottle of water for my two hour stay.  By the time I arrived, I had been admitted for the night.  My platelets were LOW, like so low that my nurse told me to sit down and she would unpack me.  There was nothing to unpack, I didn't know I was staying, Shac brought me a bag later with jammies and toothbrush.  So last night I had two bags of platelets, three bags of blood and eight potassium pills. My medical foundation nurse said I got a full house of blood products, with the 2 bags of platelets and 3 of blood.  I'm still putting together what all of this means, but I feel pretty good for the first time since December.  

When it rains it pours
Whew!  That is a lot going on!  But wait, there's more.
Next Sunday my sister is getting married.  I am so excited to get to participate, and hope I continue to feel good.  Two weekends ago, I missed her bachelorette party which of course was in Disneyland.  Here is the picture of me in my Bachelorette party swank, notice I have a slurpee, not a drink from the tiki bar like she did.  Cheers to moving forward healthily.

Lucky Number Seven

This is round seven.
I'm in room 21.
If I wasn't on chemo, this would be a great excuse to go to Las Vegas.

My platelets went up over the weekend and I was able to start the round on time Monday morning.  After my conversation with the nurse manager last round about timing of chemo, I am very happy to report that chemo started earlier in the day and I got a good nights sleep.  This round has been pretty normal, yesterday I was very tired but this morning I woke up with plenty of energy.  

This is what a port looks like under the skin

I may end up staying an extra night in the hospital because I will again be getting a blood transfusion.   All of my medication, blood draws and infusions happen through a port that was surgically implanted in my chest before I began chemo.  Chemo started so quickly back in September, that I didn't do much research on a single port versus a double port.  A double port would allow for me to receive infusions at once.  Regularly I receive chemo and fluids through my port together, but blood products and chemo cannot mix.   Because I have a single port, we have to wait for my chemo to finish before giving me the blood transfusion.  It is not a problem to me, and as I previously stated, I'd rather stay an extra night in the hospital than take up next week with an out patient blood transfusion.

Many people have been asking what I do with my time in the hospital.  I sleep a lot, my body is basically fighting with the chemo the whole time it is in my body and that makes me quite tired.  As I've spent so much time here, I've gotten to know my nurses well, so I visit with them when I my blood pressure, lungs and temperature checked.  From the time I check in on Monday until I am discharged I must remain on the fourth floor.  Some of the staff refers to me as 'Speed Racer,' as I do an average of ten laps a day around the entire floor.  I spend a lot of time watching TV, surfing the web, and playing games on the iPad.  Though many people have given me books, my brain is just so fuzzy that I have trouble concentrating on reading them, blogging and sewing.  Those are the things I'd like to be doing though.

I'm in good spirits today.  Hopefully, I'll stay this way.  TEN ROUNDS TO GO!

Cresting the Mountain

It has been a while, sorry.

Did I ever mention that my oncologist has been on medical leave herself since October?  In her absence, I've been being taken care of by the team of oncologists and lead nurse practitioner.  Because my treatment has been going well with minimum side effects this hasn't been a problem.  Only recently has it became a little challenging that multiple people are in charge of my care.

Round 6:
It was a long round, made a little longer by the fact the the doctor didn't let the hospital know I was coming in.  The typical routine is that I get blood work done and a pre chemo check on Friday, then my orders for monday are sent to the hospital.  Since I was seeing a different doctor, my orders didn't arrive until after I did.  This made the usual Monday wait longer than normal.  Because this wait has been getting longer,  it was time to talk to the nurse manager about why that was.  I was happy to learn it was multiple factors, I was showing up too early and the hospital wasn't aware of my wait time since I hadn't mentioned it to the correct person in the past.  I was glad to be informed and escape this wait in the future.  This meant chemo in the evenings, and mesna all night, all week.  No sleep for the wicked.  While in the hospital, the greater Bay Area started experiencing a flu epidemic.  For me this meant I had to keep the door to my room closed and when I left my room I had to wear a mask.  It makes sense, but also made me feel a bit of cabin fever.  This round went well well overall.  I didn't loose my appetite or need a blood transfusion, though I was really weak when I left the hospital.

Chemo depletes your resources over time.  The longer it is in your system, the longer it takes to recover from it.  Since my cell count was low when I left the hospital, we knew they would dip further when I went home.  So, I spent the week after chemo exhausted on the couch and getting out patient blood transfusion.  This wasn't my favorite, as I was too weak to even get up to get my own glass of water.  My husband is a rockstar.  I hate that he has to take care of me so much, but am thankful he is willing to.  I felt much better after the blood transfusion, as I explained to my friend Kristine, it feels like your ski ball game has loaded (you put in quarters, hear the balls come down and play)!  Unfortunately, when they give you a transfusion, they also have to give you a diuretic to help you get rid of all the extra liquids in your body.  Translation, it makes you pee.  When you take a diuretic it dehydrates you, dehydration leads to constipation when you have been very sedentary for a week due to lack of energy when needing a transfusion.  I was very uncomfortable last week and am happy to be feeling better this week.

I've made it through six rounds of chemo.  Recently, more of my time has been treatment and recovery than feeling good.  Though it sounds goofy, I didn't realize how much energy I had before cancer became part of my life.  I guess I didn't realize it, until it was gone.  These past few rounds have been more challenging on my body and mind.  My brain feels like a television whose channel is constantly being changed.  It is mentally and emotionally taxing to not feel like yourself.  It actually makes it hard to write, as I keep loosing my train of thought.  Again, my husband is awesome and encouraging.  He keeps reminding me that this is the hard part, in three rounds we will be at the half way mark, the top of the mountain.  Sliding down the backside is easy.  Keep me strong in the tough climb.

*If you are waiting for an update on my Lotsa Helping Hands site, we are waiting to see if my platelets are high enough for treatment tomorrow.  Thanks for your caring and patience.

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.