Saturday, May 24, 2014

Sprung from my tower

We did it!!!!!  This morning my neutrophils were 2280, which is over twice as high as they needed to be!  That must be some kind of powerful bone marrow meditation I invented.  I must admit, I feel a bit like a rockstar, which is funny considering I didn't actually do anything.  Thank you, everyone, for the well-wishes that helped me achieve this goal!

I feel like Rapunzel when she escaped from her tower, singing:
Just smell the grass! The dirt! Just like I dreamed they'd be!
Just feel that summer breeze - the way it's calling me
For like the first time ever, I'm completely free!
I could go running
And racing
And dancing
And chasing
And leaping
And bounding
Hair flying
Heart pounding
And splashing
And reeling
And finally feeling
Now's when my life begins!
Well, my "life" isn't beginning, but my weekend certainly is!  We are going to crash my dad's campsite at a nearby county park.  We'll set up a tent with an air mattress, and I'm going to get the best sleep I've had in days--the fresh air, the chirping birds, the babbling brook, the cuddles of my darling daughters.  Oh how I've missed those cuddles!  Some of you might think it's odd that I'd rather go camping than come home and sleep in my own bed, but remember that home is where I was trapped for nine days prior to my hospitalization.  I'm looking forward to being somewhere else for a bit!

It is so strange not to be tethered to the pole on which my fluids were hung.  I keep hesitating before moving and reaching my right arm.  It's okay, right arm!  Reach away!  Reach for freedom!

I have six days to enjoy life, get some work done, and continue recovering.  I'm mostly worried about getting my guts back in order before chemo on Friday.  I was taken off of antibiotics when I was discharged today, but I have a long row to hoe.  It's a tenuous situation in there that would be nice to stabilize before chemo wrecks it again.  My solution is probiotic pills and yogurt every day.  It's a system that I employ after every chemo and has worked for me so far, but six days is not much time.  If it can be done, I can do it!

Thank you for all of your support that you showed while I was hospitalized.  My family and I are so grateful to all of you.  I hope you all have a wonderful holiday weekend!!!!    

Thursday, May 22, 2014

Bone marrow meditation

Here is my bone marrow meditation that I invented last night.  It was rather odd to write and probably equally odd to read, but I thought I’d try to share it.  Perhaps it was inspired by the potential for camping this Memorial Day weekend? Please let me out of here so that I can spend a night at the campground!

Take three deep, cleansing breaths.

Draw your attention to your feet.

Wiggle your toes.  Flex your feet. 

Draw your attention to the bones in your feet.  Those bones are filled with cells.  Imagine the cells are gray coals.  Inhale deeply, and exhale your breath onto the coals.  Continue breathing on the coals until they get red hot. 

Draw your attention to your legs.  Big, strong bones in your legs.  Breathe on the coals. 

Continue to breathe on the coals in every bone in your body until they are all red hot.  

Imagine this heat nourishing your bone marrow, feeding the cells for many cycles of growth.


The tower from two blocks: a poem by the OC

This is a poem that my brother wrote for me.  He captured my frustration in a way that is clever and funny, but he also uses strong language that I rarely use myself.  I am posting the poem because I enjoy posting poems that other people write for me.  Please read at your own discretion.  

Trigger alert:  strong language.    

The crusade of the day sends the kids away
Dad is feeling the heat as the family wants to stay
Don't wake me, I'm resting, don't sound any alarms
Stop poking probes into my arms
But they're not listening
But they're not listening

Imprisoned cells of cells ring bells
The dripping drops signal auditory hell
Nurses crawl to flip the switch
Just get me my Neosporin, bitch.
But she's not listening
But she's not listening

Escape from quarantine, I have my life to live
I can hear the screams for books--damn kids.
Give me a hall pass for the night
I'll come back tomorrow--I said I "might"
But no one's listening
But no one's listening

Don't they know by now I'm stronger than a fucking ox?
I'll knit my own escape and give it socks
My mind will free me for the night
Now let me sleep, dammit, and turn off the light.

An unlikely nurse

Alternate title:  How I became the grumpiest I've ever been

Alternate alternate title:  I'm in the hospital but I'm totally fine

On Friday I received the news that I was neutropenic and needed to stay away from all potential sources of infection.  I had all sorts of seemingly crazy instructions, such as to throw out fresh flowers and to wash bananas before peeling them.  It was no problem to enact these instructions, and I was ready to hunker down at home and grow some neutrophils.

I was still pretty weak, tired, and nauseous on Friday, so my mother-in-law (MIL) decided to have the girls over for a sleepover.  They love sleepovers at grandma’s house and were thrilled by this development.  Ian got to have the night off, and I went to bed early as usual.    

In the morning, our weekend was diverted to the path that I am still on.  At 8 am we received a text from the MIL that Eleanor had been up puking all night long.  My kids have been disease-free for weeks, and of course it is my neutropenic weekend that they decide to be infested.  The question was, then, do the kids stay at grandma’s or come home? 

In hindsight there is only one answer to this question (a vehement “stay at grandma’s”), but at the time we weren’t sure what to do.  Regarding Eleanor, we felt that the poor little dear would have been more comfortable in her own bed, and we felt we would have been putting out the MIL for her to keep dealing with the pukey situation.  Regarding myself, I called the oncology clinic twice and spoke with two different nurses, both of whom said it would be fine to bring Eleanor home as long as I didn’t touch her or any of her dishes (saliva-contaminated items). 

Both girls came home.  I donned a mask and relinquished my recliner.  I set up a sufficiently comfortable new post for myself in our desk chair at the dining room table.  I also moved my sleeping quarters to the guest room.  I stayed away from Eleanor; Ian would have to deal with the sick child by himself.   

On Saturday night Azalea started her own puke festival.  Ian was up all night helping her.  It was difficult to quench my mom instincts and not help any of my ailing family members.  The door to the guest room remained tightly sealed.

Ian woke up feeling ill, so on Sunday morning I called for back-up.  For an hour or two, I was the only nurse available for my family.  I wore my mask, some latex gloves, and stayed out of the living room.  I delivered all beverages in clean dishes, and bussed dirty dishes on a clean platter (i.e. I did not touch dirty dishes).  Before long Aunt J came to our rescue and did EVERYTHING:  washed pukey laundry, decontaminated doorknobs, delivered sips of juice, and read books to sleepy kids.  It was a sunny day so I spent most of it on our porch, confident that I was avoiding the infestation.  She stayed well into the evening, and planned to return early the next morning.

On Monday morning she accompanied me to my appointments.  I had a heart echo to check on how my heart is holding up to chemotherapy (result:  my heart is holding up perfectly!) and an oncology appointment to check on my white blood cells.  My counts had not increased one bit over the weekend, and I complained about continuing to feel nauseous and crappy.  I steeled myself for another few days stuck at home.  Aunt J continued her labors taking care of my family and household. 

Disaster struck on Monday night.  I puked.  Although I was still feeling chemo-nauseous, I have a strong constitution and was therefore suspicious that this was the beginning of neutropenic-Heather-gets-the-stomach-virus.  Oooo did this make me grumpy!  We took my temperature.  It was 99.8.  My instructions have always been to go to the ER if it gets above 100.5.  We called the nurse.  She said I was still fine at home, but to call back if my fever got worse.  I eagerly crawled into bed before we could take further temperature readings. 

On Tuesday morning my fever was still under 100.5, and I had not puked further.  I was weaker than weak, more nauseous than nauseous, and the stomach virus had found its way to the other end of my digestive system.  Grumpy!  I managed to keep down the fluids, and I largely slept through the discomfort. 

After my afternoon nap, my family was getting concerned.  I still had a fever (albeit under 100.5) and they were concerned about my hydration levels.  I once again called the nurse.  She asked me how I thought I was doing.  I told her that I thought I was on top of the situation, but my family had urged me to call and make sure she agreed.  She said she’d relay my goings-on to Dr. Oncologist and call me back.

I had barely set the phone down when it was already ringing with her call.  Dr. O said to go to the ER and get myself admitted. 


It took almost four hours to get from the ER to a room in oncology.  By now it was 9pm, which is my chemo-recovery bedtime.  I was so tired on top of all of this other junk, but I had another two hours of questions and blood pressures before I was left alone to rest.  Plus, they wouldn’t let me take my usual pills (which I had brought from home), so I had to recite my meds, make sure they got it right, and wait wait wait for it all to be delivered from the pharmacy department.  Grumpy! 

I maybe got one hour of sleep that night.  If you’ve ever stayed in a hospital you know that they wake you up every couple of hours to make sure you’re alive.  It’s the strangest thing given that sleep is the best medicine.  Plus, my neighbor’s thingy beeped for literally 2 hours before anyone turned it off.  I was later told that there was a temporary malfunction in our nurse-calling buttons, and that is why no one came to turn it off.  Grumpy!  

Dr. O came to my bedside on Wednesday morning.  My counts were still low, my fever was still low, I was still taking prophylactic antibiotics (IV rather than pill, since I’m here), and I was not clinically dehydrated.  She ordered a test to make sure that I didn’t have a Clostridium difficile infection.  If this test came out negative I would be able to take some anti-diarrheal medicines and start to feel better.  The results were to be in at 11 am.

11 am came and went.  No one came to give me results.  I’m a patient patient, but by 1 pm I thought it was time to page a nurse and request the results.  Turns out I had been passed off to a different nurse.  The new nurse came in, and when I asked her about my C. dif result she casually said, “Oh, I think it came back positive.”

I think I said, “WHAT?!?!”, but what I might have said was, “What the f---?” or “How long have you known this?” or “Why did no one come tell me sooner?”

Then she logged into the computer and saw that my C. dif result was in fact negative.

GRUMPY!!!  This feeling masked what should have been a huge huzzah for the good result.  

Ooo was I crabby.  This place was throwing my off my game!  They were messing with my schedule, my sleep, and my mind.  I wanted to go home where I am professional nausea-and-diarrhea recover-er. 

I almost forgot about the final grumpy factor.  I have very weak 4G and wireless signal from my hospital bed.  I’m dropping calls, failing texts, and Facebook and blogging are out of the question (I’m typing this in a word processor and am going to have Ian upload it from home if I can’t get a moment of signal here).  Fortunately I need sleep, not entertainment, so I’m not terribly bored or anything.

Then my MIL brought the girls in to visit me.  That helped me to feel better.  My room is on the top floor of a brand-new wing, and there is a rooftop garden on this level.  We played on the playground in the sunshine.  I assured them that I’m getting better and I’ll be home soon. 

I made it through another night here last night, this time with slightly more sleep.  I saw Dr. O in the morning, and I’m doing great on all fronts except for one:  my neutrophils.  My total white blood cells have increased, and by that alone I am no longer defined as neutropenic.  However, my absolute neutrophil counts are still a bit low (in the 400’s).  Dr. O wants them to be above 1000 before she sends me home, probably because of the recent stomach virus infestation.  What I’m trying to say is that I don’t think that these values would have landed me in the hospital (indeed a nurse just expressed her surprise that I’m still here), but since I’m already here this is the threshold I must cross to be released.  I have no idea how long it will take me generate these neutrophils; there is no medicine for it.  (Well, there is (neulasta), but I’ve already received my dose—the neutrophils I have are probably due to its action!)  In a somewhat panicky voice I asked her if I will still be here next week, and she confidently said no no no. 

So…I need a goal…something to target…how about Saturday?  Let’s shoot for 1000 neutrophils by Saturday.  Clearly my preference is for tomorrow, but in the absence of any knowledge on the subject it seems like a herculean task to double my neutrophils in 24 hours.  Saturday it is! 

For those of you supporters out there who like to have details for prayers, meditations, or whatever, my neutrophils are counted from blood taken between 3:30 and 4:30 every morning.  (I told you there is no sleeping around here.)  Again, they need to be over 1000.

I’m in high spirits, guys, I really am.  We made some bad choices, I had a bad day, and now I’m fine again.  We’ve got a new family protocol to prevent this from happening again (people who are sick elsewhere do not enter the home, even if they are my offspring; or I retreat to my MIL’s house if people start their sickness in my home—note that we discarded this idea last time because in our mind her house was also contaminated).  I’m trying to translate my personal recovery patterns and habits to the hospital setting, and I’m starting to figure it out.  I’ve still got this.  I’ll be home before we know it.                       

Friday, May 16, 2014

Things just got serious

This is just a quick update, dictated to my phone, with the results of my appointment today.  The new chemotherapy drugs have really taken a toll on my immune system.  This explains my extreme fatigue this week, and why "turning the corner" has remained elusive.  For the first time in my history of receiving chemotherapy, I am neutropenic.  My white counts are merely 1000.  This means that I could get an infection very, very easily, and that an infection could kill me.  As a result I am starting a course of prophylactic antibiotics, throwing out all fresh flowers, and turning away all unnecessary visitors.  It also means that it is in my best interest to skip my daughters' public, germy gymnastic show tomorrow.  

Boo!  Shit just got real!  And I don't like it!

I will have my blood work done again on Monday, and hopefully I'm significantly better.  I guess I'll be needing a new recovery/family/work-life balance protocol for next week.  I'm in uncharted territory for sure.

In other news, how cool is it that I dictated this whole thing to my phone while lying on the couch?  Thanks, iPhone!

Newton's third law: action

I mentioned that we experienced a travel day of epic proportions on our journey to Florida.  In this and the following post, I will tell two stories about that day.  They are both amazing, but in opposite ways.  They remind me of Newton's third law of motion, which is simply that for every action (force) there is an equal and opposite reaction.  The second story is in no way related to the first, beyond the fact that the protagonists are shared, but the fact that both events happened on the same day was incredible and exhausting.  Here is the first tale.  

The lines for rental cars were as long and slow as the airport security checkpoint lines.  We had been traveling for over ten hours, having begun our journey at 4:00am, and were disappointed to have to wait one more time before heading to our resort in Orlando.  We inched our way forward between the ropes.

The girls were (and always are) wonderful, but like their parents they were tired of queues.  They were starting to fuss and bicker, so I dug deep for inspiration.  Inspiration struck in the form of a fort.  I situated our 3 drag-along suitcases to form three walls of a fort, with a backpack serving as a doorway.  They approved of this activity and promptly initiated their own make-believe game to incorporate the fort.  

The unfortunate aspect of this inspiration is that the fort now had to be relocated two feet forward every two minutes.  The girls were helpful in this endeavor, with Eleanor trying to lug or scoot the largest suitcase all by herself.  When she was mid-shove, a gentleman ahead of us in line said to her, "Wow, you are strong, just like your mother!"  I snapped my head to size up this person who would speak to my child.  He was tall and of generous proportions, perhaps 55 or 60 years old, with silver hair, a kind face, and clear eyes.  It occurred to me that he noticed my fatigue, my head, or some other aspect of my cancer-fighting self.  His compliment was directed at me.  I smiled and thanked him, reassured that it was a heartfelt comment and nothing else.  The fort game resumed at its new location, and I didn't give the commenter another thought. 

When we got close to the front of the line, I decided to take the girls to the bathroom so that we'd be ready to get in the car once the keys were in hand.  While we were gone, the commenter struck up an interaction with Ian, saying, "I won't let you give this back to me."  

"Excuse me?" Ian asked.

The man repeated, "I won't let you give this back to me," and thrust something into Ian's hand.  "I don't care what you do with it, I don't care if you throw it away, but you won't give it back to me."  In Ian's hand was a crisp 100-dollar bill.  The man looked like he was about to cry.  He told Ian that his wife had died of melanoma when their youngest child was fifteen.  That was the end of their exchange; it was the man's turn to pick up his rental car.

The girls and I rejoined Ian at the counter, surrounded by our luggage fort.  It wasn't until we arrived at our black Dodge Charger that Ian told me what had happened.  My eyes welled up with tears--tears of sorrow for this other family who went through what we are going through, and tears of joy for the kindness that had been bestowed upon us.  We loaded our fort into the trunk, buckled up our wealth, and headed for Orlando.           

Monday, May 12, 2014


My bones are anvils.  They have sunk me to the bottom of a warm, shallow sea.  I can see all of your boats sailing around above me.  Sometimes you drop anchor to lift me up with your thoughts and love.  Mostly I just lie there, resting, drifting, awaiting the day when my bones lighten up and I raise back to the surface.  Then I will find my boat and sail around with you once more.

The new drugs are not doing me any favors.  Fatigue is indistinguishable from my previous drug cocktail, nausea seems to be a bit worse, and I'm having morale issues due to the additional treatments headed my way.  [My dad mapped it out and my last chemo is now the 22nd of August.  August!  The girls' first day of school is August 14th!  This will probably put my surgery on Azalea's birthday (first week of October)!  My poor children.  Plus I'm an invited speaker at a national conference on August 10th or so...what am I going to do about that?  Sigh.]

The new drugs are a bit easier on me in two ways, and those are chemo brain and heartburn.  For the most part I don't feel as dizzy or blurry, although I do have my moments.  Regarding the heartburn, I wonder if my oncologist reduced my dose of steroids.  The heartburn was terrible last time, and she mentioned that that was the fault of the 'roids and that she could reduce the dose.  I'm pleased with the change, regardless of the cause.

Time to put on some socks and go for my daily stroll before I sink back down to my watery recovery place.  Ian planted lots of flowers yesterday, so I'm excited to go outside and admire them.  They seem to grow so quickly in my intermittent world.

Thursday, May 8, 2014

A minor freak out

Vacation was so incredibly awesome.  So awesome.  Some narratives of our escapades are forthcoming.  However, the cancer life keeps plunging me under, violently reminding me that it needs to be my priority right now.  Before I get to a vacation narrative I need to vent on that front. 

This evening during dinner my favorite nurse called to change my appointment time tomorrow.  Sure, no problem, why?  Because the clinic doesn’t stock my new drug and so they have ordered it to arrive in the noon shipment.  Oh, interesting, what is the new drug?  Actually, it is not one but three new drugs that I will be injected into me tomorrow. 


Flurouracil, cyclophosphamide, and epirubicin will be my new drugs.  It was a lot to take in one less-than-five-minute phone call, but I think she said that I will be administered these drugs in three doses, three weeks apart.  Then she said that we will hop back on the TH+P train for the remaining three doses of that cocktail.

Um, did I just hear that correctly?  Are my hard chemos being extended by three cycles (i.e. nine weeks)???  Did she just take away my halfway milestone????  Really???

No, hbomb, keep your eye on the ball.  What she said was that they have a great plan for continuing your as-yet-successful anti-cancer regimen in the absence of carboplatin.  These are the drugs, this is the plan, and it will work.  You can do this.

I have not yet had a chance to look up these three new drugs, but I’m pretty sure that they are all different flavors of general mitotic inhibitors.  This means that they will all keep my hair from growing back, kill my immune system, etc. From the nurse I know that the epirubicin, “will not make me any more nauseous than the taxotere + carboplatin” combination that I’m used to.  Huzzah for being no more nauseous than I’m used to?  Right?

I think that one of the reasons I’m so bummed is because I have come to know what to expect from the TCH+P.  I’ve got the recovery protocol down—three days of heavy bones and raging ‘roids followed by seven days of extreme fatigue, nausea, heartburn, and various unmentionables.  Now, however, I am headed into uncharted territory for the first time since my first cancer in 2010.  I usually love trying new things, but when it comes to general mitotic inhibitors, I’m going to go out on a limb and admit that I'm not looking forward to trying anything new. 

It’s a wonderful thing that I’m coming off of some glorious family time.  I should be as ready as I’ll ever be for the attack tomorrow.  I just need to decide who or what is doing the attacking (the drugs on cancer, me on cancer, the drugs on me, or me on side-effects).      

Who needs hair in the summer, anyhow?  You all will be like, Ugh I’m so hot I wish I could take off my hair or something, and I’ll be like, Wow this breeze sure feels refreshing on my sweaty bald head.  Oh snap.    

Tuesday, May 6, 2014

Florida magic, morning 4

Today the girls voted to stay at the hotel. They don't want to go back to Universal Studios with our free pass, nor do they want to spend a second day at Disney, nor do they want to return to the beach.  They just want to swim in the pool and play mini golf. That sound good to me! My Picc line prevents me from swimming,  but relaxing poolside suits me just fine.

This is her hole-in-one face.  She got a hole in one!

Florida magic, afternoon 3

We used our free Compassion Program tickets at Universal Studios today. What a blast!  It was much warmer and sunnier than our day at Disney.  The girls loved Seuss Landing, and the Harry Potter area was stunning.

Florida magic, morning 3

Today Ian and the girls swam before breakfast. Then they drank milk out of goblets because all of the ordinary glasses were dirty. Nothing about this vacation is ordinary!

Monday, May 5, 2014

Florida magic, morning 2

It is a perfect day in Florida.  We spent the morning at the pool. Now we are making sandwiches and heading to the beach.

Florida magic, afternoon 1

For the most part, we managed to take the Magic Kingdom at a leisurely pace.  It was overcast and occasionally drizzly, and so it think not as busy as it could have been. We got a disability pass that allowed us to check into a ride and get an appointment to come back to the near-front of the line. It worked like a fast pass, with the bonus that occasionally the attendant would let us skip the waiting part. 

No time to talk more for I'm late for my date the the pillow, but here are my two favorites from the afternoon.

The girls were too shocked by their favorite princesses, Elsa and Ana, to engage with them. Ha !

Here's all of us on Aladdin's magic carpet ride. It was awesome !!!

Sunday, May 4, 2014

Florida magic, afternoon 2

Beach day! This was my daughters' first time to the Atlantic, and they loved it. The only word to describe today is perfect. 

The boarder.

The runner.

Saturday, May 3, 2014

Florida magic, Morning 1

Do I have some stories for you about our traveling day yesterday!  Wow!  But you'll have to wait until I get home for those.  I need a keyboard. Epic tale.

It is a rainy day in Florida, but we don't mind. The girls were so excited to swim that they decided to pretend that the jacuzzi was a pool.
We're on our way to Magic Kingdom right now, with umbrellas and ponchos in hand.  We mustn't be late for our flight with Peter Pan!

Thursday, May 1, 2014

Here we go!

We just finished packing.  We fit both car booster seats into one bag that will be checked, along with beach towels and larger-than-four-ounce toiletries. We have two carry-on roller bags with all of our clothes and rain gear, and two backpacks with books, snacks, and activities.  That's it!  I'd say that's light packing for a family of four (perhaps my minimalist brother will disagree).  :)

It was strange packing all of my cancer-patient accoutrements, which I decided to carry-on to avoid the potential issue of them being lost if the checked bag gets lost.  I put my syringes filled with 10 milliliters of sterile saline into a 1-quart ziploc baggie to get through security.  I started to count out all of my pills, but then realized that security probably requires me to keep my pills in their original bottles.  A google search confirmed this fact.  I now have eight or so bottles of pills rattling in my carry-on.  Also, I almost forgot to pack any head coverings.  That would have been interesting.

Today our trip was slightly modified in the best of ways.  One of Ian's colleagues found a program that offers free park passes to Universal Studios for folks like me.  It's called Compassion Partners, and it doesn't look like they have their own website but you can find the contact information for this and other wish-granting programs here.  Today I sent them a doctor's note and a request for free tickets, and my wish was granted!  Our 2-day Gold (front-of-the-line) pass will be waiting for us starting on Sunday.  We're still planning on going to Disney's Magic Kingdom, but we are now thrilled to take the girls to Universal Studio's Islands of Adventure.  Seussville!!!!!!  I hope that Eleanor is 40 inches tall so that we can all go on the Spiderman ride.  That is the best ride I've ever been on.  

I must admit that getting ready for this trip has thrown me a bit off-balance.  I don't think I realized it before, but I have a recovery protocol that includes early bedtimes, lots of resting, and evening walks with friends.  Trip preparation, from folding laundry to getting the free tickets mentioned above, has taken a lot of time and slightly disrupted my recovery protocol.  I'm so tired.  I'm not at all complaining or concerned, but let's just say I'll be relieved when we get on that plane tomorrow.  Then I can strike a new balance of resting at the pool, walking along the beach, and going to theme parks.  That sounds like a life-loving protocol if I ever heard one.  Don't worry, we won't wear me out.  We're not going to be on a mission to see everything, but rather enjoy everything about what it is that we see.  We're going to avoid full speed and instead take a Sunday drive through the experience.  (Yea...I can't wait to tell you how well this strategy worked.  Heh.)

We calculated that we need to get up at 3:30 am to leave by 4:00 to catch our 6:14 flight, so I'd better run.  Hugs!