Saturday, February 27, 2010

Flashback: February 26- March 1, 2010: Chemo Hits Back

I got my first AC chemo doses one week ago.  I had a fever and chills today.  Tonight, I was admitted to Mercy Hospital for IV antibiotics.

Thursday, February 25, 2010


We met with Dr. Laudi  and a genetics specialist today.  I do not have any BRCA mutations.  My breast cancer is not due to heredity.

My WBC counts are dropping, so I was started on antibiotics to prevent infection while I am neutropenic.  Dr. Laudi gave me prescriptions for Ativan and Reglan to help with nausea. 

At my OB appt, I had an ultrasound and got to see an image of our little one.  So far, so good.

Saturday, February 20, 2010

Flashback: February 19, 2010 Chemo with a Baby on Board

Chemotherapy details are explained to me in layman's terms.  I sign a consent form- astounded by the level of trust my signature implies.  Trust in medicine and science and other people who are....well, human, like me.  There are so many minds and hands and hearts involved, each doing their part then passing the torch.  I hope each one of them got enough sleep last night, is not worried or distracted, ate breakfast and lunch, washed their hands, has enough time, likes their job, feels valued by their employer, feels supported by the other people in this chain,... I know that's a lot to ask, but in them I trust.  In God within them, I trust.

In the clinic infusion center, I am led past other people who appear well into their retirement years, sitting in their recliners, reading, dozing, talking with people they brought with them or focused on the screens of the TVs placed high on the wall between every few chairs or so.  Soap opera drama.  Fakey-friendly banter of the anchors on the afternoon news.  Game Shows.  Talk shows.  Courtroom shows. Commercials.

An old Sesame Street song starts spinning in my head:
"One of these things is not like the others.
 One of these things just doesn't belong.
 Can you tell which thing is not like the others
 by the time I finish my song?"

It's me.  The answer is me.  I don't belong.

I am led to a rocker recliner.  It's made of some sort of textured vinyl material that is probably easy to clean, but makes a farting sound when I sit down.  So, in the face of the serious, somber mood-that I either brought with me to this room, or just maybe, was already here waiting- I laugh.  A name band is placed around my wrist.  Labs are drawn.  A nurse starts a peripheral IV in my arm.  Bags of Adriamycin and Cytoxan chemotherapy drip into my IV tubing, into my vein, coursing through my bloodstream with the beat of my heart, flooding my body with  substances toxic to cells that grow quickly, but supposedly bypassing the baby who shares my body.

There it is.  My deepest fear.... of hurting an innocent life.  I watch the drips.  Suddenly, this room feels too hot, too small, too confining.  I shift around trying to get comfortable, to relax, but restlessness and a farting chair are not a good combination.  I fight the urge to stand and scream some choice swear words over the mindless drone of daytime TV, to rip this IV right out of my arm and flee this room with blood spurting from my vein....  No, it isn't necessary to scare the crap out of everyone...  I shift my weight, the chair farts, I giggle.  But within a minute or two, I am fighting  the urge to just reach over and casually turn off the pump.  At Children's Hospital, I know the nurses can lock the keypads on the pumps to prevent kids from monkeying around with them, but I doubt they take such precautions here.   Push the OFF button, no big deal, one relatively short 'beep,' then carefully loosen the tape, pull out this IV, press a kleenex over the site, quietly stand up and sneak out, avoiding eye contact with everyone between me and the door.  Fight or flight. What exactly am I fighting?  What am I fleeing? 

I take a deep breath.  I close my eyes and visualize the chemo reaching the cancer cells in my bones.  The battle continues.  I pray a protective bubble around my baby.   I trust...

The hands on the clock barely move.  They tick by ever so slowly.  I position my arms and legs and lean forward, ever so carefully moving my body into a standing position, ever so quietly, ever so gently.  With my butt at least two feet above the seat of the chair, I pause for a moment- then, I plop back down with every pound I've got.  And that's what I have to say about this.

Friday, February 19, 2010

Break in Journal

On my CaringBridge site, there is a break in my journal at this point as I jump ahead to July 8, 2010.  I plan to fill in these months.  I have all my original notes- written in notebooks, on the backs of envelopes, on post-it notes and such.  During that time, part of me was lost in my thoughts and part of me wanted to spare you from the crushing heaviness of worry and fear...though in my heart I knew you would have willingly rushed forward, claimed a piece of this burden and held it up, sharing it, making it lighter... and in my heart, that's what you did.

Thursday, February 18, 2010

Treatment Plan

We met with Dr. Laudi for our treatment plan:

-AC chemotherapy given IV every 3 weeks X 6 rounds.
-The A is Adriamycin (or Doxorubicin)- side effects: mouth sores, hair loss. Adriamycin is cardiotoxic- or hard on the heart- so there is only a certain amount a person can get in their lifetime.
-The C is Cyclophosphamide (or Cytoxan)- side effects: nausea/ vomiting, bladder lining irritation.
Both of these chemos will cause my white blood cell count to drop, so I will have increased risk of infection. I will have to wear a mask when I am in crowds.

The day after I get chemo, I will go back in for an injection of Neulasta, which helps boost my white blood cell count. Side effect: bone pain.

-ECHO done- to get a baseline of my heart function
-Meds: Fentanyl patch 25 mcg
Dilaudid prn
Zofran prn for nausea
Marinol prn for nausea

I will have labs drawn every 7-10 days to monitor blood counts.
I start chemo tomorrow... with a baby on board...

Tuesday, February 16, 2010

Choosing Joy

Due to my nausea and vomiting and the fact that I am getting dehydrated,  Dr. Laudi put in a standing order for IV fluid boluses. If I can't keep anything down, I can call and get a fluids at the infusion center. 

Mark and I met with the Perinatologist today for a genetic consult.  I signed forms to release all my medical information to help determine the affect of the radiation I received- the amount of energy emitted and the direction it was aimed into my body. The various medications I have taken will all be considered with respect to the baby's estimated stage of development. He is concerned about the condition of my bones and anticipates I will have to have a C-section to protect them from the stress of delivery.  A premature delivery is a possibility. 

This day, immersed in science.  Science concerns itself with facts, explanations, predictions. Sounds like one of those mind-boggling word problems we used to get in math class:

"So, you are driving in a car going 65 mph to a destination 224 miles away. You have 2 suitcases in your trunk weighing 7lbs and 26lbs respectively. Your dog has got his head out the passenger window and the last song you sang along with on the radio is now mercilessly stuck in your head. You have consumed 12oz of soda and you need to pee. How many bugs will have landed on your dog's tongue by the time you reach the next rest stop 57 miles down the road?"

Or something like that. The ones the math teacher read to the class with utter delight. The ones that made me roll my eyes. The ones that made me pull a wild guess right out of thin air. Even today, I am still amazed there are people who actually like those sort of challenges and actually want to figure them out.  I stand humble before those people- whose brains let them just figure out the problem without getting distracted by the story of the problem- the thought of a roadtrip, the miles rushing past, the anticipation of  rolling down the window for a grateful dog. 

Since it is unethical to conduct radiation studies on pregnant women (or anyone in my opinion, regardless of gender or species),  they will use known cases of radiation exposure for comparative data. Unintentional radiation exposure in people who didn't know they were pregnant- even using data from pregnant women who were exposed to radiation from other sources, like bombs. All these factors will be added and subtracted, weighed and measured, compared and contrasted.   Our data is factored in, mixed into a mind-bending, tongue-twister that people will devote much time in solving. Our data is given to Science with the belief that it matters somehow, to somebody, somewhere.

I don't know what our equation looks like or if there is an absolute answer. In some ways, I feel I have already rolled my eyes and moved on.  I am living this story.   My answers are in my heart, in my soul. I know what I believe.

My Little One,
I believe
in you...

Saturday, February 13, 2010


Nausea and vomiting.  Oh, my!  Along with many opinions...

Mark firmly says if it comes down to choice between me and a baby- there is no choice. I am his priority.

My sister, Amy, is lost in worried thoughts. She loves my children as her own- she always has. She always will.

My sister, Ashley, is 2000 miles away in California working at Farm Sanctuary. She still finds it surreal that I have breast cancer- let alone that I am expecting a baby. She calls apologizing for all the times she called me 'Harass' or 'Sar-ha' or told me my feet stink. I apologize for all the times I called her 'Ash-hole.' "We are sisters," I tell her,  "I know you love me, Ash-hole."

My brother, Nick, who acts all tough to compensate for his sensitive side... walks me out to my car and gives me a hug without saying a word.

My mother suggests I am trying to kill her and says there are quicker ways.

Though my father faces stress in other people in a way that tends to ground them. My dad responds to his own stress in the way I imagine he did when he was a boy- with avoidance and anger. He retreats to the safety of the sofa or TV or yard... I follow him. He is defensive. I realize, he still feels responsible for me. He questions me about birth control, my plans, the future, the what-ifs. In his eyes, I am still the little girl who walked right off the dock into the lake and he pulled me out. I am still the girl who insisted on wearing a dress while learning to ride a bike with him running along beside me and kissing me when I fell off and skinned my knees. I am still the girl who hit the gas, instead of the brake, while learning to drive and drove the car up into the yard and he encouraged me to try again. My dad thinks a pregnancy will surely kill me and it is not worth that risk. In tears, he says, "You are my baby."

"I know how you feel, Dad," I tell him, "but this is my baby."

People have many opinions...

With each person I tell I relive all the fear and shock I already feel myself- plus some. I decide to wait to share this with everyone- I need to give myself some space to hear my own thoughts, to listen to my heart, to find my way.

Friday, February 12, 2010

In Dr. Laudi's hands

Dr. Laudi came in smiling at my appt today. He had not understood why my tumor markers had been climbing, but now it made perfect sense. There was a new source of estrogen flooding my body. A new reason for the increased nausea and vomiting.

To my amazement, Dr. Laudi does not believe this life is doomed. He refers me to a perinatologist on Monday and orders a BRCA lab draw (a test that determines if my breast cancer is genetic). The clinical trial we planned is cancelled, but Dr. Laudi says there are chemotherapy drugs that do not cross the placenta and have been used in pregnant women. He will collaborate with the perinatologist on a treatment plan- if I choose to continue my pregnancy. He reassures me that he will support any decision I make. He acknowledges that I have a lot to think about and consider- it's possible we could end up saving a baby who won't have a mother...

That possibility breaks my heart. Three children wouldn't have a mother. I feel my eyes welling with tears.

"Do you want to see a picture?" I ask.

"Of course."

I dig through my purse, take out the ultrasound picture and put it in his hands. He looks at the picture- the reason for those climbing tumor markers that had eluded him.

Dr. Laudi smiles, "Hope can spring from life in ways we do not expect."

Dr. Laudi believes. I do not take for granted how fortunate I am to have him helping me through this.  He is my guide, my interpreter.   

As he holds the picture, I look at it with him.

Ultrasound picture

I am exhausted, but I can't sleep.

There is an ultrasound picture in my purse tucked in among my coupons and keys and miscellaneous junk. I can't bring myself to look at it. I feel like I have taken a huge breath in- the kind of breath you take to prepare yourself for something important or to brace yourself for something devastating... only I haven't let it out. I am holding my breath. I have stopped breathing.

Random thoughts take advantage of this vulnerable state- consuming me with fear and worry. I struggle to let these thoughts go- to center myself, to breathe, to believe.

I am haunted by:
-Tamoxifen (pregnancy category D- evidence of fetal risk, carcinogenic)
-Fentanyl and Dilaudid (C- benefit must outweigh potential risk; decreased fetal heart rate, neonatal respiratory depression, withdrawl)
-Zofran (B- no adverse effects)
-Zometa (D)
-Lupron (X- demonstrated fetal abnormalities and mortality, not to be used)
-Femara (D)

MRIs, PET scans with radioactive dye, CTs, bone scans, RADIATION.

Natalie and Larissa were born to a mother who avoided things, like caffeine, while pregnant.

How could anyone possibly grow in the toxic, hostile environment that my body has become? How could anyone survive? How could a mother condemn someone to a potentially painful, suffering existence? What if we die in the process?

I answer my own question- NOBODY could grow and survive. I cross my fingers and tell myself it's best not to get attached.
The picture is in my purse. On the chair. Next to the bed. But, I don't look at it.

Thursday, February 11, 2010


Please sit down.
Take a deep breath...

I got a call from Dr. Laudi's office. The labs I had drawn yesterday showed an elevated hcg level.

This afternoon, an ultrasound confirmed-
I am 11 weeks pregnant...

Wednesday, February 10, 2010

Clinical Trials

Dr. Laudi presented a clinical trial at my appt this morning. Clinical trials are important to cancer treatment because they build on knowledge and create new standards of care. The trial he is suggesting will involve chemotherapy and I need many tests to establish my baselines.
-I signed the consent for NCCTG/N0392.
-urine analysis
-brain MRI
-Bone scan
I am disappointed that the Tamoxifen did not work for long. I knew something was up after the relative calm of the past few months. My pain has been increasing, along with my nausea/ vomiting. I feel exhausted and drained.

More tests

My tumor marker has climbed to 98. The Tamoxifen is not working. Dr. Laudi ordered a head CT to check for mets...

Thursday, February 4, 2010

Dealing with Pain

The MRI showed 'no changes'. I had a consult with a Pain Clinic and got a spinal block that is targeting the pain in my right leg. I also started taking Cymbalta which blocks certain pain impulses from the brain. Cymbalta is also used for people with depression and generalized anxiety disorder- which is really just more pain. According to the informational insert, Cymbalta 'helps maintain mental balance.' So, no physical pain plus no mental pain. It's kind-of a 2-for-1 deal.

More pain

I have been having trouble walking and all day my right leg pain has gotten worse. Fearing a potential blood clot, Mark took me to the Mercy ER. Pain meds given and MRI ordered for tomorrow.