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

Saturday, April 30, 2011

Day I don't know

I have been handing off my classes for the past week.  Bringing in a new teacher, introducing them to my students and showing the instructor what we are up to in class.  Next week I will walk out the door, leaving them in someone elses hands.  My progress notes are up to date so they can be referred to in my absence.  Our first annual fundraising trail ride is on track, volunteers and raffle items are in place.  There are 3.5 weeks left in the session after I leave, mission accomplished.

This weekend I will try to tie up the loose ends at home.  We will install a dog door, a small one so my 15 week old Miniature Blue Heeler Fanny can come in and out but the larger dogs remain outside except when intentionally admitted.  This will cut down on the mess and the chaos.  My large German Shepherd/Irish Wolfhound X is scheduled to be shaved on Monday to assure his comfort in the heat.  Fanny's new Invisible Fence receiver is in the mail and should arrive any day...she's going to hate this, but it will keep her from herding the increasingly angry walkers in the neighborhood.  Puppy or no, she knows her job and those walkers will keep moving.

Post surgical camisole are ordered and will be delivered to our office on the day of my surgery.  Just in time for me to return.  My post surgical wardrobe is determined:  camisole, drawstring pajama bottoms with pockets (for my cellphone), one of my husband's button front shirts (sized XXL, I'm hoping the look is endearingly adorable, not ridiculous.)

Bought a camera that my husband can use to record this journey.  I can count the number of photographs he has taken of me, or taken period on one hand.  If I was hit by a truck tomorrow there would be almost no photographic evidence of my existance.  What makes me think he will do this?  If he does then that's incontravertable evidence that Cancer changes everything.

The first week of my recovery will be at my wonderful, generous In-Law's home.  This will allow my husband to work during the day and possibly sleep at night.  I am unsure about this since I will be on less than my best behavior during my recovery.  Adjectives such as: crusty, anxious, and downright mean would be appropriate to describe me NOW...what am I going to be like post surgery?

There is hushed talk of hiring a day nurse for the first week, hushed because I don't think I will need it, and the idea that I will makes me angry.  My husband does not want to confront me on this, he's doing it "behind my back."  I am letting him because there is no arguing with him on this point, he won't discuss it and is treating me like a child who doesn't know what she needs.  I have resolved that he and my in laws are doing it out of love for me and I am trying not to fight against it.  I hope she has a sense of humor or, if it's a man, he's ruggedly good looking.

I have enrolled my mare in another month of training, and my dear friend has also agreed to keep my puppy for the first week of my recovery.  This might be the end of our friendship since this hardheaded dog will completely dominate her household and is imperfectly housetrained.

My sister in law is managing the meal delivery through an amazing website that organizes that sort of thing.  I can't imagine this being less than overwhelming and I am so grateful to her for her generosity and grace as well as the gift of those lining up with their loving meals.

I have a stack of notes and charitable gifts that I have to acknowledge, plus the meals already being promised.  My personalized notecards should be delivered next week.  I hope 50 is enough, it was all I could afford at that moment.  Maybe I should have ordered 100 just to be safe.  Why was it important for them to be personalized?

Food in the fridge is dwindling, I am on track to clean it out on Tuesday.  Joy.

No Kindle yet...carpets need cleaning but I think it will be OK.  I am so ready for this to be over and be looking at this from the other side where I can regain some perspective so small things don't look large and normal things don't look huge and my "to-do" list doesn't seem so important.

Thursday, April 21, 2011

Day 27 Pitching

May 5th.  That's the morning of my surgery.  I found out two days ago, but haven't been able to write about it.  Today I received the presurgical packet from the reconstructive surgeon and it was full disclosure heavy, very intimidating stuff.  I have to sign every page, there are 7 of them and each one basically says "this might not work or worse."  I am still waiting on the breast surgeon's package, that should be a kick.

I told the girls at work about my date and we started hammering down teachers to cover my classes.  Already they are coming in to shadow me, each one is a relentless reminder that my presurgical days are ticking away and the searing pain of having my breasts cut away is hurtling at me like a fastball pitch.

This is such an edgy time for me, I am snappy and dangerous to be around.  Yesterday I missed a baseball game with my family.  Though I am not a big baseball fan, hot dogs and beer in the moist, simmering southern evening is such a treat.  We are lucky enough to have a local farm team for the Devilrays and games are big fun.  Through our friends, my son was awarded the last minute honor of throwing out the first pitch and because of work I was going to miss it.  I pitched a fit and refused to go to the game at all.  I stayed at home and ate scrambled eggs while everyone else partied their socks off.  Childish.

My anxiety is also making it difficult to ride.  Today I got a lesson on my wonderful green mare who is under training with my friend.  We trotted, she rushed, I tightened and wasn't easy on her mouth, my hip angle kept closing, I sat too hard, my weight wasn't balanced, when I asked for the stop I clenched with my legs and butt.  All wrong, I just couldn't get through the anxiety, the ever present feeling that I am going to die kept surfacing.  Realistically, I know I am saving my life, not dying but fear is irrational and so am I right now.

Tuesday, April 19, 2011

Day 25 Artists, Surgeons and Strangers

Saturday I went to the wedding of someone I did not know.  Of course they knew my husband, but since it was through work I was not aquainted.  A second joining, their wedding party was exclusively the children and stepchildren.  Everyone lit a unity candle and it was lovely, very symbolic.  If the best intentions make for a good outcome they should be OK. 

I hate these things and I love these things; the idealized lovestory part of them makes me feel a little lacking.  I never had a big wedding with a poufy dress and veil, instead I opted for the small intimate wedding with few guests and a great deal of personal meaning.  This was my choice entirely.  Still, when I see the vision of perfection marching down the aisle to her properly dumbstruck-with-wonder groom I feel I might have missed something.  This one of the hazards of the road less travelled.  When faced with a fork in life the one with the most overgrowth and fewest footsteps is usually the one I choose.

Often people I know make me more nervous than people I don't know.  I like having the latitude to speak to people who have few preconceived notions about me and about whom I know nothing.  It's great fun to get to know a stranger for just a little while at a wedding, or a bar, or any kind of affair.  I like the whole confessor scene that plays out: they don't know you, you don't know them and together you exchange all sorts of secrets and information that you might never exchange with someone you actually knew.  Mostly you walk away and never see that person again, passionate intercourse with no ties...naughty.

I met a gifted musician, a pianist who has backed up Elton John and others.  He was fascinating and very OCD.   We spoke about art, music and books.  He is also a Physician's Assistant in surgery, ironically he specializes in the type of surgeries I am about to have.  Without prompting he recommended the reconstructive surgeon I had chosen just that morning to do my new boobies.  He says this surgeon is one of the best in the country and he would choose no other.  I am having these full circle moments more and more often now, they delight and terrify me. 

Before he returned to the piano which he played as a favor to his newly married friends, he asked for my favorite Elton John song so that he could play it for me.  I hesitated to tell him it is Levon, from Madman Across the Water.  We agreed that it is a wonderful, dark, complicated song and NOT wedding material.  He returned to his set, sang Your Song.  He sang it for me: 
If I was a sculptor, but then again, no
Or a man who makes potions in a travelling show
I know it's not much but it's the best I can do
My gift is my song and this one's for you
And you can tell everybody this is your song
It may be quite simple but now that it's done
I hope you don't mind
I hope you don't mind that I put down in words
How wonderful life is while you're in the world

Sunday, April 17, 2011

Day 20 Through the Looking Glass

I am drinking 3 whey casein protein shakes a day, have quit drinking alcohol, and am eating fruit, vegetables and lean protein meals.  That's when I am hungry enough to eat a meal as the shakes are very filling.  The theory is that I am giving my body what it needs to build strong healthy cells, epithelial, and muscle tissues.  This will enable me to heal well and fight infection effectively.  It takes a concerted effort to make a protein shake that I can stomach and then proceed to stomach said shake.  It is taking up alot of time and effort and I hate those shakes, they are not nearly as comforting as a glass of red wine and a steak.  Sigh.

My days of eating what I wish are over.  Now I eat to live and nourish a healthy body and immune system.  I do not eat what cancer craves. 

I also own two brand new recliners.  Given my new healthy eating plan I find this silly and it illustrates my wacky new life.

 I shop online for camisoles with concealed pockets for drains and fake booby pillows to simulate a normal shape.  They are so expensive I have to file insurance to afford them.  So much for my miserly TJ Maxx pricing standards.

My husband did the ironing today.  Nothing makes sense anymore.

Tuesday, April 12, 2011

Day 18 Justice

When the surgeon asked me: "Why do you want the Diep Flap procedure?" I said "Justice."  This was my idea of a give and take negotiation with my cancer, a deal with my devil so to speak.  You take my breasts and I can take all of this unwelcome fat around my middle and move it up.  Justice.

It took a lot for me to surrender to the tissue expanders.  My surgeon had to go into all of the stuff that I knew but had depressed.  Tissue death being the major here, followed by radiation damage.  She told me she crys when the Tram and Diep Flap patients have to undergo the radiation which shrinks the breast.  A donor tissue breast cannot be rebuilt, ever.  Implants can be redone if needed.  Lots of stuff can kill your donor tissue, the procedure is very long, anethesia is high risk.  Recovery takes months, not weeks.

Heavy sigh.  I was looking at this like my silver lining and I am shocked by how disappointed I am.  I hate my tummy and it is never going away.  I love my breasts and they are.  I cry half way home while my husband holds my wet, snotty hand.

Sometimes that is what you need to turn yourself around, a rollicking pity party with just you and your dearest friend.  After I was finished being weepy I looked at what I did have:  Healthy children, a loving husband, a job I love (not to mention a job in this economy,)  my husband has a steady job, we have two cars in good repair, my fridge is full of food, my in-laws are always right there if I need help, I am surrounded with people and animals who love me, I have a roof over my head, my insurance is good AND I bought cancer insurance several years back.  I will continue to have all of that along with pretty implants and a tummy, I will be zaftig.   That's Yiddish for round, curvy, or literally "juicy."   And, because of Cancer I will from now on, know that I have more than enough.


Monday, April 11, 2011

Day 17 So Says The Surgeon Part II

Woke at 5:30 a.m. in preparation to see the surgeon in Birmingham.  This one was recommended by one of our relatives who happens to be a reconstructive surgeon.  He operates with her and says that She is the one He would send his wife to if she was ever in my position.

She was younger than I by about 9 years, but I guess that stuff happens when you get older.  She was very straightforward and to the point.  She recommends the double mastectomy, no tram flap or diep flap.  The sequelae is too risky and the tissue would be destroyed if I happened to need radiation, which is a distinct possibility.  She sees tissue expanders and implants following to be the most expedient and least risky reconstruction option.  After her lengthy and patient explanation I am seeing the light on this issue.

Let's face it, she's a woman and I have to assume she has placed herself in this position at least as many times as she has had patients.  She has seen the results of all her treatment options from a female perspective.  I appreciate that.  I also appreciate her bedside, or table side, manner and intelligence.  We did not discuss as much as debate and she was on her game the whole time.  I forgot to ask about her preferred pain management protocols, but I will fire her an email later.

She will give me until the beginning of May to have my surgery.  A blessing since I have so much to do at work and at home.  I don't know if I can do it all before the surgical date.

Ambien has been great.  Only the last two nights I have woken at 2:00 and not been able to get back to sleep.  Of course I have been taking only 1/2 a tablet.  Tonight I will take a whole dose.  NEVER considered that I would take sleep medication, not in my life.  How things change.

Saturday, April 9, 2011

Day 15 The Fog

When normality settles around you it's very much like fog.  You have trouble seeing at a distance,and your senses are muffled to what is immediately outside of your sight.  It makes the reality of the world less real, you are fooled for a short time.  Blinded sailors find themselves impaled on rocks, pilots descend when they should pull up.

Normality is not my friend.  It fools me into thinking that I'm OK and have nothing to worry about.  The fog clears and I have to readjust to my reality and it's such a harsh blow.  I go from normal to devastated and back to normal again. 

My new friend sent me a journal entry about a mammogram that she had.  Happily it was normal but, while she waited for her results she had a glimpse into what might be.  She looked deeply into the unity she shared with her breasts.  Their role in nurturing, alluring, and loving; the feelings that they absorbed and evoked.  This was a nakedly honest moment and I am glad she wrote it down and shared it with me.  Her writing moved me to tears.

My new normal will be breasts without sensation, they will never be alive with feeling and there is so much feeling in a woman's breasts.  We rarely think about it but, when the fog lifts I do.

Friday, April 8, 2011

Day 14 Ambien To The Rescue

Today I got my Ambien.  I had to pull the cancer card on the call nurse, lucky for me cancer trumps office procedure and they called in my prescription.  This will probably be the last time cancer saves me time and money and I am relishing it.

This will potentially be an entire night without crying, nightmares that wake me, wakemares that make night endless.  No thoughts of being maimed, infected, thrombosed or dead.  Just sleep.  Ambien, you are my hero.

Let it begin.

Thursday, April 7, 2011

Day 13 So Says The Surgeon - part I

Invasive lobular carcinoma
   Nottingham grade: 2
   Lymphatic vascular invasion: Absent
LCIS component: Present, moderate
ER: 92
PR: 95
Her2/neu: 1+

There's good news in there.  See the ER and PR?  Those are the measurements for Estrogen and Progesterone receptivity and they are very high.  High enough that this surgeon thinks I may dodge the chemotherapy bullet and instead go the Tamoxophin all the way...that's if the margins are clean and the sentinal node biopsy is clear. 

More I think than the mastectomy (which I dread), I am fearful of the lingering sickness of chemo and the stress that would place on everyone INCLUDING me.  I do not enjoy being sick.  Lest you think that's an overly obvious statement, let me say I know people who relish being sick.  Being cared for and maybe pitied satisfies many of their needs.  I am the opposite and probably equally twisted.

I have a pathological need to be independent.  My husband loves doing things for me, but I have to will myself to let him.  Being dependent, even on my most trusted partner, feels dangerous to me.  I would do almost anything not to be sick.  My recovery is going to require me to change big time.

The surgeon told me that I had to option to do a single mastectomy and that he recommends this.  I see this as a typical Male response.  The fact is, this type of carcinoma is known to reappear in the opposite breast in later years.  Not a 100% chance by any means, but you have to keep a close watch on it.  Who out there would willingly go this route again and, in the meantime, have to look at their remaining breast as a potential assassin?  That's bullshit if you will forgive my barn talk.  Plus, having two breasts that are different densities might unbalance me in the saddle, not to mention that one would age and the other would stay the same.  Take them now, rebuild me, let me proceed balanced and perky.

I will have my second opinion Monday in Birmingham.  This time with a female breast surgeon...let's see what SHE says.

Monday, April 4, 2011

Day 12

The storm is rolling in.  If you watch the local weather it should be apocalyptic, they are running the Fear Of God Doppler weather radar nonstop and the warning boxes keep popping up.  Every two minutes the television emits a beeping, warning us that the end is near.  I can hear it in the distance and it is thundering nonstop.  It was 87 degrees today with 35 mph wind gusts, ominous.  Tornado weather.

This is a normal Spring and early Summer event here in the Deep South.  We have had a relatively easy severe weather season, so we are due for a blow.  I hope it won't be bad.

We began our Spring Session at our facility today and I got to meet our new crop of students.  Some new to the facility and some new to me, some known and long beloved.  They are precious.  I am so glad to be back at work.  This is the best place for me.  In spite of the fact that I haven't slept in 12 days (an hour here and there doesn't count) I felt an energy imbue me and a bright bubble surround me.  I hugged my hero horse.  From now on he will be referred to as Dallas The Diagnosticator.  I mounted and rode for the first time since my diagnosis.  Just a walk around the arena, but that wasn't the point.  That ride put me back in the saddle again, so to speak.

Tomorrow I have my first consultation with a breast surgeon.  We will discuss my prognosticators, and my procedure options, we will hash out recovery scenarios.  After I will run to work, hopefully in time to cover my first class of the day.  Post work I will meet one of my girlfriends for a martini and a salad, and hopefully some laughs.  I guess it depends on what the Doctor says.

The storm is racing in now, just a short distance away and I am counting the seconds between the lightning and the thunder.

Sunday, April 3, 2011

Day 11 Three Pink Watches and a Scarf

Last Summer I had the most overwhelming pleasure of hosting my dear friend's son for a month.  They live in Yorkshire and are "horsey" folk, his intention was to work at our therapeutic riding facility while beefing up his university resume by doing so overseas.  We had the best time firing off fireworks on the 4th of July, going to Hooters so that he could charm the servers with his British accent, sitting around and playing video games with all of the neighborhood boys, training horses and laughing.  Mostly laughing.  I think I lost two inches from my waist from all of the hooting and cackling that we did together.  When he left, I cried.  I didn't say goodbye to him, I just made him promise to come back.

The apple doesn't fall far from the tree, his whole family is really great.  Fun, free spirited and all around good folks, I adore them all.  We keep in touch through Facebook.  Like me, they are practical for the most part, and pragmatic always.  They are not pink people at all.   But I just found out that everyone in the family (except their father, who is stationed  in the Middle East) went out on a special shopping trip to purchase pink watches, which they intend to wear in my honor until I am well again.  I cried when I got their message and I know every moment my watch ticks with theirs.  An immense comfort.

A week ago someone I barely knew wrote me the most wonderful, supportive, heartfelt notes.  It was one of those letters that take awhile to answer, mostly because they render you speechless.  The spirit of that amazing person reaches out to embrace you and you are supported at your weakest.  The note would have been enough, honestly, to install her in my heart forever, but today she surprised me with the gift of a very fashionable portable file (to carry my records back and forth.)  It was stuffed with M&M's and gum and a pink pen on a lanyard.  She also gave me her favorite basket and in it was her favorite book, nestled in her favorite scarf, surrounded by her favorite chocolates.  All to keep next to my recliner during those weeks that I recover...I had no words to thank her.  I think I just cried.

My wonderful Mother-In-Law has offered to let us stay with them for two weeks after the surgery.  She will do the cooking and will care for and love on my kids, maybe get them through their finals.  She even offered to hire a nurse so that my husband can get some sleep.  I haven't answered her email yet.  I sit down, but then can't find the words to properly thank her.  I give up, I just can't face that generosity without losing it.

ALL of the support I have experienced has been astounding and overwhelming.  My heart has to expand to allow it all in.  I am filled with love and fear in equal amounts.  They don't war with each other.  They coexist side by side, both taking up more and more space.  They are like tissue expanders for my soul.  They are remodeling me.

This is the gift of Cancer.

Saturday, April 2, 2011

Day 10 Birthdays

Birthday, birthday, birthday, birthday...That's what the MRI said.  The odd arrangements of clanks and bangs, mixed with the buzzing and grinding spoke to me.  A distinct male voice, just a little mechanical repeating birthday, birthday, birthday. 

The tube was so much tighter than I thought it would have been.  I felt some contact on my left hip and it made me want to move over.  Of course that was out of the question, all I could do was try to relax and bear the contact.  It resembled an over close seat mate, I wanted to get up and find a seat of my own.  A seat with more room.  The technician told me I could breathe, but to try not to move my chest wall, so my breaths were shallow.  My naked breasts were hanging from my chest and pressed tight in their own little imaging cylinders.  I had earplugs, but it was still very loud.

I am not, by nature, claustrophobic but I kept feeling this almost uncontrollable urge to move, like a surge of panic impelling me to flee or be eaten.  In the breaks between mechanical sounds, when I thought they were moving the imager, I would take a deep breath, to sink into a deeper state of relaxation and let the man in the MRI machine speak to me.   Dot, dot, dot, birthday, birthday, birthday.

Earlier, as I entered the imaging room, the technician put in my IV, when she was done her partner inserted a needle into the port and started injecting fluid, I asked what it was and he looked at me with a smirk and said "saline."  Like it was an impertinent question.  This is my new normal.  I breathe and try to relax.

Birthday, birthday, birthday.  I will celebrate every birthday after this with a party.  Gifts aren't necessary, the only gift I need is another birthday.  After this, that will be my new normal.

Friday, April 1, 2011

Day Nine Benedryl Blessings

I can't sleep at night.  I can't nap either.  It's been 9 days and I have run out of gas.  My mind runs on and on and I can't stop it.

Before my shower I took two Benedryl and I hope that will do the job for me and for my husband.  When I don't sleep neither does he.  We both look just a little older than we did a week ago.  My mind is not clear but my heart is full.  I have been surrounded by support and love, so much that I can feel it.  My husband cares for and adores me.  I am being held up.

My stunt sons came by this evening, excited to tell me that their mother gave them permission to shave their heads in solidarity when I have chemo.  They are so thrilled to go bald.  I tell them that some people take chemotherapy and keep their hair.  They are shaving their heads anyway.  It makes me giggle.

I have received emails and Facebook posts that I want to print out and tie up with a ribbon like love letters.  When I am through with this I want to look back and remember the goodness of humanity. 

Why is it that, late at night, even these blessings can't help me sleep?