A year in my life, from the day I was diagnosed and for the full year after. Walk with me.

Wednesday, June 29, 2011

Day 92 Sucking in the Whitewash

I was born and raised a Californian, and spent many days in the cold Pacific Ocean.  Large waves, big rocks and sunburned noses filled my teenage years.  I remember the exhilaration of riding those large powerful breakers with nostalgia.  The Gulf Coast with it's sugar sand and warm water do not compare to the savage power of that crushing surf.  If you aren't savvy you might not know to dive through the walls of those blue waves, toward the top so as not to be caught underneath the crush all of that water.

We called it "sucking in the white wash."  When the power and weight of all of that water surging in and returning creates a vortex that forces you down into the white foam near the bottom and tosses you around like a rag doll on spin cycle, helpless to break out until the ocean is merciful and you are surrendered.  Disoriented, you swim like mad to reach the surface before the next wave comes or your breath runs out.

That is how I feel right now.  Several hours after having my drains pulled (the second time was much easier) I started to feel unwell, but drove my daughter anyway to her long delayed hair styling appointment.  It was not long after arriving at the salon that I began to feel seriously sick.  Stupidly I made arrangements for my daughter to get back home and then drove myself back.  I got home safely, but if I had my wits about me I would have made someone come and get me, I do not remember much of that drive.  My temperature upon arrival was 102.8 and rising.

The following saga includes and urgent care center, a stupid doctor, IV for antibiotics and dehydration.  Infection #2, this time it's staph but we're on it from the start.  I feel like garbage and am wiped out, the meds are making me sick, but the fever is gone.  My lungs are screaming as I swim like mad for the surface.

Wednesday, June 22, 2011

Day 91 Phenomenal

I told the lab technician that my blood was very much in demand lately and must have a high gold content because since my cancer diagnosis I have never had less than 6 vials of blood drawn.  This, I say, must be the reason why she can't find a single vein in my right arm that will let blood.  She is kind and laughs at my lame joke because she knows that the searching, boring needle is painful and laughter better than a left hook to the jaw.

It is my first visit to my new oncologist's office, which is also the local cancer center, and everyone here is very nice.  Really, too nice.  I am set on edge by their overwhelming sympathy and sad eyes.  It is making me irritable.   I know that these people have seen a great deal of pain and suffering...I just don't want it transferred to me.  Can't they see past my bulging drains and shaky gait to my inner conqueror?

All of the volunteers here are cancer conquerors and they are a spunky bunch.  My volunteer took one look at my drains and said "Tram Flap?"  "No," I responded, "Implants with a revision."  "I hate my Tram Flap, you chose the right thing."  We compared our infections, deadhesions and cellulitis and I was reassured by her frank and matter of fact friendliness.  It was good to discuss it with someone who understood.  We both stood for a moment on the same side of the valley and sighed, agreeing that our bygone travel was some gnarley shit.  And then we said goodbye.

I was passed from hand to hand before I met The Man.  I really like him, smart and kind with a good sense of humor.  He responded really well to our active style of cancer management and we were grateful for that.  Not every physician appreciates that quality in a patient.  Patients acting as their own advocates can be very time consuming.

We discussed my tumor pathology, size (1.3cm), focal structure (3), hormone receptor status (100%, phenomenal), Her2 (0), Oncotype score (4, also phenomenal) and how very lucky I was to have been hit in the chest, as mammography would have been unlikely to uncover this until it was quite a bit larger.  Typically, a woman as young as I would be subjected to chemotherapy, because I have so many years left and everyone wants to be sure it won't come back.  But because of my phenomenal hormone receptor status and Oncotype scores we can omit that and use only Estrogen inhibitors which will throw me into menopause or inhibit postmenopausal estrogen production.  This will all depend on where I am on the reproductive timeline.

He said we did the right things.  He said my chance of with reoccurance with treatment is 3-5%.  I still can't believe it.  He said I could thank G.d for that horse, I will have a great story and some scars, but I will be showing those off until I am very, very old.

Wednesday, June 15, 2011

Day 84 Yarn Balls

Wednesday has come and gone and I still have two drains sticking out of my chest, a little more than 5 inches below my arm pit, held in place by a single stitch and tunneling between my expanders and chest wall.  Unpleasant would be a tactful word for them, painful is more accurate.  Painful because they hurt of course, but also because they separate me from the things I want to do, like drive, work, sleep on my sides, exercise, ride my horse, visit my horse, drive to visit my horse.  I have been confined for 6 weeks now and the surgeon won't pull them out until my daily volume decreases by 20 ccs.  I might lose my mind.

I tried teaching myself to knit but have been forced to admit that, while skilled in many other things, I am a hopeless knitter.  My yarn balls are now being appreciated by my Fanny, my Blue Heeler puppy.  Poor Fanny, she looks at me like I have failed her with my confinement.  No more long days in the pastures, eating horse poop, splashing through mud puddles and herding any beast sorry enough to stand still.  Like most Blue Heelers she needs lots of activity and sadly has none.  She vents by shredding anything she can find and laying half dead roaches at my feet.

We are all coping the best we can.  My aspie daughter told me that I am ruining her summer, which should be spent with friends preferably in a pool and NOT taking care of her mother.  She tells it like it is, no guessing necessary with her.  My son is lucky enough to spend this month at camp, but was reluctant to slip away while I still need care.  My poor husband enters the house holding a dining chair in one hand and a whip in the other, just in case his tiger of a wife decides to leap off her recliner and at his exposed throat.

Undeniably as long as my body keeps draining I will have these drains anchoring me like a boat in a harbor.  But a harbor is not where boats are meant to be and I dream of sailing away.

Thursday, June 9, 2011

Day 78 Lucky Girl

A gurney ride on Versed is like Mr. Toad's Wild Ride, but it doesn't end with a steamy chuff and the drag of brakes.  In place of the costumed ride operator there was a masked nurse anesthetist the brilliant blue of the surgical lamps and then nothing.

Asleep again while my reconstructive surgeon worked to understand why both of my incisions were unraveling.  Why the unrelenting edema soaked dressing after dressing, making my husband and I professional maxipad engineers.  Why pain that won't surrender to pain killers or muscle relaxers.  Hopefully ending 4 escalating weeks of suffering.

I expect to wake up without expanders, with drains and possibly a PICC line.  I expect the worst so I won't be disappointed or shocked.  My husband has to the be person to tell me what the outcome of the surgery is when I wake up, I don't know why.  I guess I want the results to exist within our private bubble so that we can adjust to it before taking on other people's expectations and possibly disappointment.  Probably mostly to hear his voice tell me, whatever happens, we'll be OK.

When I woke it was to a calm, attentive and thankfully mature nurse who quickly returned me to my room and kindly advised me that there were no orders for a morphine pump.  I believe I was equally calm and mature when I told her to advise my surgeon that those orders were bull crap and morphine was the least he could do after cutting my chest open.  Again.  Thanks to her quick actions I had my precious button in my hand in a very short period of time and spent the rest of the night pushing it in my sleep.  Before I slipped off my husband told me that the Alloderm, which serves as a sling that holds the weight of my expanders and future implants had failed to adhere to my chest wall on both sides.  It was unthinkable, and my surgeon had not seen this failure on both sides before.  There was no infection visible to the naked eye, but cultures were taken and results would emerge in the next few days.  He replaced the expanders and added an extra 100 ccs of saline to take up the space my edema had created.  Waste not want not.  I had four new drains and no PICC.

My husband and In-Laws left me for the night in the charge of a private nurse and drove the one and a half hour drive back home.  My husband has to work tomorrow, but my In-Laws will return and take me home if I am allowed, which I am.  Doped with extra strength pain medication I am packed into the seat of the car with my trusty arm pillows and driven home to my own bed. 

Monday morning my infectious disease doctor called to tell me that I have a gram negative bacteria that was not vulnerable to any of the 5 antibiotic I had so far taken, and prescribed a 6th.  It seems to be working because I am much more comfortable if that can be said while enduring fuller expanders.

Since surgery I have been sleeping because that is all I am capable of.  A human should not have two major surgeries within a month if it is at all avoidable.  The fatigue and inevitable depression is crushing and I have been in a bleak state, but I am trying to pull myself together again.

Yesterday I made my bed.  It was a statement that marked the end of bedridden confinement, helpless as a turtle on it's back.  Today I made the bed again and helped my son get packed for camp.  Tomorrow I will make my bed and take a long trip, surrender some drains and take another long trip home.  Every day, stronger and more capable.  I will exchange my grim endurance for hopefulness.  I have reason to be optimistic, while I was sleeping away the week my Oncotype score came in the mail; on a scale of 0 to 100 (best to worst) my tumor scored a 4.

I'm a lucky girl.