Chemo Vs. Tiff... and the Winner is...

In a shocking and unprecedented upset over eight rounds... the winner by TKO is Tiffani "the Banshee Slayer" McCarthy.

Last week I had an MRI with contrast, Ultra Sound, 3D Mammogram, PET Scan and CT.  They all confirmed what Dr. VanderMolen thought might be possibile... "there are no remaining metastasis."

This one is for you Bean!

The techs, radiologists, and doctors would not have been able to find the offending tumor or lymph nodes if not for the titanium markers placed during my biopsies. The hope is that when they remove lymph nodes and the area where my tumor once lived, they will look at the tissue under the microscope and find that all the cancer cells are already dead. This phenomenon is called pathelogical remission. Fingers crossed!!!   

This is very good news for a number of reasons:

1) Long term prognosis.  While there may still be cancer cells left in my body, they are too few and disparate to show up on any scans, which means that if they do ever reappear in am organized way, my doctors know that the chemo combination of ACT (Andryomycin, Cytoxin, and Taxol) is highly effective on my particular kind of cancer.

2) Surgical options. Knowing chemo was successful made my decision to go with oncoplasty rather than a full bilateral mastectomy much easier. Tomorrow, I will undergo what I hope will be my first and last surgery.  Fingers crossed.  My surgical oncologist pioneered this procedure. It is technically considered "breast conservation", but in reality it is more like lymph node conservation, which is important for quality of life. 

My surgical oncologist and plastic surgeon will work simultaneously to remove the cancerous area of my left breast, sentinel lymph nodes, and any other lymph nodes that might be affected.  For symetry, my plastic surgeon will remove the same amount of tissue from the right side, remove a great deal of skin from both breasts and hitch them up. It is essentially a lumpectomy with a breast lift and reduction. 

Many of my friends and family may not understand this decision. The impulse to just "get rid of them" is a strong one. I, myself would have consented to a full bilateral mastectomy the day I was diagnosed if a surgeon had been in front of me. However, IN MY CASE, there is no statistical advantage. Therefore, I chose to go with the less radical, painful, and  aesthetically jarring surgical option. Let's hope the docs are right and it will also be less  emotionally and mentally traumatic.    
  

Celebrating with family and friends after my 8th round victory!

I love my crazy cousins. 

Melissa (cousin) and I were close enough without having to go through cancer together, but thank God I have her to help me get through this. 

Love my little brother Harrison. 

Niamh (pronounced Née-ve). Our beautiful 11 month old.

Jimmy - my handsome 3 year old. 

Ding ding! Toasting the 8th and final round!

My chemo taxi driver... Niño John (Godfather). 

Carrie, my infusion nurse an total bad ass! 

Hubby

Why all the pictures? Well, while the last three weeks post chemo have been riddled with tests, tests and more tests, I think it's important to pause and celebtate the victory. Equally important, is to reflect upon the toll of the war, not just on me, but my loved ones. 

These are just a FEW of the many special friends and family that are always in my corner. Thank you! 

The side effects of chemo may not be gone. They may not ever go away completely, but I am still floating like a butterfly and stinging like a bee!

With Immense Gratitude,

Tiff

  

The Fear...

Coming off chemo is a lot like the Monday, maybe the Tuesday or Wednesday, after a really long music festival weekend. You're not really in much physical pain anymore, but you just know deep, deep down that you've done a lot of things, said a lot of things, and DONE a lot of things you probably shouldn't have, or otherwise wouldn't have; not in your right mind of course. Which is exactly what you keep telling yourself as the flashbacks get more vivid and last longer. 

It's called "the fear".  Fear of what you may or may not have done; fear of what you may or may not have said; and most of all, fear of going forward without all the details or facts. 

How do you go back to work on Wednesday and chat with the chick from engineering, or as you dubbed her on Friday night in the base tent... Holly Golightly, since the last you saw her was go...ing... behind the big bloke down the back... sure it's all rain and muck anyway... no one will notice. 

What you don't want to think about is the fact that her name for you could be... would probably be... far worse. If you could only remember of course! Oh the sweet and painful haze. 

Well, just like Coachella, Burning Man, Oxygen, or Electric Picnic, you know you HAVE to do it... so too, you have to deal with the fear of what you have done and what you have still yet to do. 

It astonishes me to think it possible to debase myself further than I have at a music festival. Sadly, chemo puts any previous attempts at debauchery and dehumanization to shame. 

Once you get past the physical torture of headaches, body aches, nausea, vomiting, constipation, diarrhea, starvation, and glutinous indigestion you are left with the psychologically impairing fear of ... "oh God... what have I done... oh God... now what do I say... Oh God... what do I do!?!"

So, as most of you know, my 8th and hopefully my last music festival (AKA chemo treatment) was administered last Tuesday. Never should have consented to chemo on a Tuesday. "He died of a Tuesday. His stockings were torn", or so my Grandfather Tony told me. I digress...

So, what's next!?! You'd like an answer.  Well, so would I. Just like I would love everyone to stop misusing serious elements of proper grammar for dramatic effect ... (-; ... it's just not going to happen. 

(If you get all five of those and forgive the missing one, pat yourself on the back.  You are a bonafide grammar geek and language snob). 

Not to mention the hanging parenthesis... totally unacceptable. I digress...

The truth is, I am scared to death. So scared in fact, I am hiding behind linguistic puns to avoid putting words to my fear. 

Most of the time I am grateful for the kinetic, frantic pace at which I have transitioned from breast-feeding goddess mother to Gia-like chemo patient. 

However, as I move away from the effects of chemo, which is what I now know, on to next steps, I pause. 

I pause to shudder at what I have been through and cringe to imagine that I am only one-third of the way through the "treatment" phase of this process. On deck: surgery, then radiation. 

To save time, here is what the next week looks like:

Monday:

10:15am -  Dr. VanderMolen (medical oncologist). Take CBC's and review. Confirm PET scan date/ time. 

* Don' forget to ask him whether or not it's normal for my thumb and big toe nails to be turning black and falling off. 

* Be sure to let him know that I've only had one BM followed by 7 rounds of diarrhea since last Monday. 

* Show him two-week old cut on shin, which is not healing or scabbing. 

2:45pm - Dr. Ramirez (OBGYN). Attempt to sit for physical exam to figure out why it feels like I've grown a new hymen when I try to have intercourse with my husband. 

* Don't forget to ask about the Mojave Desert that is my vagina and what I can do about that, which doesn't involve steroids or hormones. 

* While I'm at it, I might as well ask her for ideas on how to be a wife to  husband when I've got the Mojave Desert between my legs, a bacterial and fungal Isla Vista in my mouth, and hands and feet as numb as the political class in this country. 

That's just Monday...

Tuesday:

MRI

Ultra Sound

Mammogram

Wednesday/ Thursday:

PET Scan

Friday:

8:15am - Dr. Silverstein (Surgical Oncologist). Review pathology and updated scans. Discuss bilateral mastectomy versus oncoplastic breast conservation. 

* Don't forget to ask for an excel spreadsheet-like break down of the percentage rates of local recurrence, systemic recurrence and survival rates at 1, 2, 3 and 5 year intervals for 35 year-old, white/ Hispanic, triple-negative ductal carcinoma patients with 3+3+3=9 (highly aggressive) cancer. 

* And, that, ladies and gentlemen is the crux, the point, the fork in the toad, the belly of the whale if you will. 

The following Monday - Dr. Savalia (plastic surgeon): 5:00pm - tell him which surgical option I've chosen, oh and ask for his opinion. 

* be sure to ask him if he can remove excess skin from under arm and trapezoid area due to chemo-induced   weight loss at the same time as he removes two-thirds to all of my breast tissue, lymph nodes, muscle, skin and nipples. That'd be grrrrreeeeeaaat... thanks!

So, before we can remove my post-two-baby flab, we need to get back to my fork in the road, my belly of the whale. 

From my growing, but still myopic understanding of my diagnosis and treatment protocol, there is no clear cut answer to my question: which surgery is best, bilateral mastectomy or oncoplasty? 

Here are the rough numbers, as I (a layperson with chemo brain) understands them. Of ALL patients with ALL forms of breast cancer, only 10-15% have "triple negative" breast cancer. Of that 10-15%... 80-85% of those women are African-American. The remaining 15-20% are Caribbean, Hispanic or White. The "White" portion of that group "tends" to be young/ pre-menopausal between the ages of 27-35. 

Do you get why my head is about to explode!?! To say that I am in the rarest of the really rare, rare group might make sense... maybe!?!  Now, try to find pertinent data on that sub, sub, sub group on which you can base a life or death decision on. 

Don't forget to factor in my pathology, chemo progress, tumor size, carcinoma grade, staging, etc.

Then, weigh carefully the fact that the percentages are so close on local recurrence, systemic recurrence and survival rates for mastectomy versus oncoplasty that there is no margin of error.  Oh, except for the fact that survival rate goes down IF... IF you make it to five years on the mastectomy. It seems that the survival rate goes down after five years with the mastectomy because they've removed a ton of lymph nodes, which is your body's waste management system.  I guess it's not good enough to build Rome if you do it without a sewer. 

Now, decide... mastectomy or oncoplasty? There is no statistical difference in the outcomes of the two surgeries in as deep as the data available shows.  Meaning the data is not taken from my sub, sub, sub type.  My decision, which can mean life or death depending on my own set of intangibles, is based on Snowden-like meta data from a group consisting of ALL breast cancers. This does not sit well. 

Tell me I'm being melodramatic... I dare you!?!  

Hence, the FEAR. I see the Banshee in the not too distant background. She has a cheeky grin on her face and a single finger brushing her smug lips.  She's begging me, taunting me to make a decision. She wants to wail. 

Here's to hoping and praying I make the decision that keeps her filthy mouth shut!

Anyone have a Chrystal ball? Surgery is scheduled for the 23rd. Don't forget to send me your lotto numbers. 

Thanks,

Tiff

Blood, Sweat, and Tears

Blood, Sweat, and Tears...                         August 18, 2014

My friend and former colleague on the Hill used to end phone conversations with fellow downtrodden members of the minority with “keep the faith” or “fight the good fight”.  I think about that line and the man who said it nearly every time someone asks how I am doing.  I’d like to make Charlie proud.  I’d like to say that I’m fighting the good fight and keeping the faith.  I’d like to say that while I may have lost a couple of battles, I am winning the war, and the sweet spoils of victory will be mine.

I can’t say any of those things, because they just aren't true.  The truth is I am getting my ass handed to me.  I can’t “fake it ‘til I make it” as my beautiful cousin once advised.  All anyone has to do is look at my face or hear my voice to know the truth.

Blood…

The first cycle (4 treatments) of chemotherapy included a cocktail of Andryomycin and Cytoxin among other drugs, including anti-nausea meds and anti-histamines.  I thought they were pumping me full of “pre-chemo drugs” in vain attempt to ward off the brutal side effects, but my inner cynic knows the truth.  They pump me full of anti-nausea drugs and antihistamines so my body won’t fight the onslaught of the offending cell-killers by ridding itself of the “medicine”.  My medial team is well versed with the body’s natural reaction, which is to reject any toxins or anything foreign by way of vomiting, diarrhea, etc.  Essentially, the body responds with an allergic reaction to the onslaught of cell-devouring drugs pumping into my veins. 

My belabored point is this, these drugs work so well at killing my cells, that they kill more good cells, such as red blood cells and white blood cells, than I am able to live without.  As if mouth sores, thrush, early onset menopause (yes, menopause at 34), and vacillating between extreme constipation and shit-my-pants diarrhea aren't enough of a carnival ride, a blood transfusion became necessary on Thursday, July 24th.  

My blood levels were so low that I became anemic and nutropenic, meaning I did not have enough white blood cells to fight any kind of infection or enough red blood cells, platelets, hemoglobin, etc. to heal from any injury.  Let’s put it this way… I have bruises on my arms from simple blood tests that were taken over four weeks ago.

Blood of my blood…

Luckily, my Uncle Eamonn and Cousin Shannon were in town from Atlanta and able to direct donate their blood in my name.   Despite the state of my blood levels, my team decided to move forward with round five of chemotherapy, which switched to a new drug called Taxol, on Monday, July 21^st.   Ironically, my uncle and cousin were simultaneously giving blood that would be pumped into my arm less than 48 hours later.  Both during and after this process, a question began to plague me: are they killing me to keep me alive or keeping me alive to kill me?  I still don't have an answer to that one.

Uncle Eamonn and Shannon donating blood on my behalf.  Thank you! I love you guys!

Sweat….

Fighting breast cancer via chemotherapy comes with many side effects.  Some are well known due to their dramatization in film and television.  Hair loss and vomiting are usually the first to spring to mind.  As discussed, in previous posts, the nausea can be controlled with marijuana and morphine derivatives such as Phenergin.

However, when most people think of hair loss, they are primarily horrified with the loss of hair on the head, which can be traumatic for some women and men.  The loss of the hair on my head didn't bother me much.  In a way it has been liberating.  The weather is too damn hot for scarves or wigs.  Particularly given the fact that one of the not-so-oft discussed results of chemo is early onset menopause.  With the heat of summer and hot flashes, I choose me, and right now that means bald. 

To be honest, hair loss has it's perks!  It's not like male patterned baldness, where I lose the hair on my head, but it starts growing like a weed out my ears, nose and bum!  Conversely, I am delighted not to have to shave my underarms, legs, or those annoying long hairs on the knuckles of my big toes, (ladies, you know exactly what I am talking about!?!). 

I suppose it’s the same reason I don’t often wear make—up.  While it can be fun to get dressed up and accentuate this or that feature for my husband, it is a false portrayal of self and that’s always bothered me. 

I have scars on my face, now a pleasant reminder of a carefree adolescence and far simpler time.  Years of summers spent on Lake Havasu and a lifetime at the beach are evidenced by the beautiful brown sun spots and freckles dotting my face, shoulders and chest, reminding me of a childhood filled with water skiing, snow skiing, swimming, surfing, riding bikes, riding motorcycles, roller skating, playing cops and robbers, and drinking from hoses with my cousins.  The crow’s feet at the eyes and lines bracketing my mouth are a result of years of laughing and smiling, a gift from God in my opinion.  I cherish each and every “flaw”.

Thanks to my Dad, I have a beautiful smile and a contagious laugh that can prompt an entire room to laugh with me, sometimes at me.  Hey, at least they’re laughing.  Without hair, my eyes, cheek bones and smile are large and infectious.  Why hide and sweat beneath wigs, hats, and scarves?

This is the perspective cancer has granted, and I am grateful.  When you’re suddenly faced with your mortality; health, not looks quickly take precedent.

However, I must admit I mourn the loss of my nose, eye lashes, and pubic hair.  Yes, go back and read the last line again if you must.

Imagine for a moment, the loss of an extraordinary amount of weight in a very short time frame (The Chemo Diet), combined with the loss of all pubic hair.  I stared appalled at the sight after showering one day.  What happened to the curvy mother goddess that had just grown two human beings inside a strong and fertile female body?  The answer: gone; from woman to 10 year old girl in just a few weeks.

   

As for the nose hair… well, the body’s natural response to the onslaught of intravenous toxins is to rid itself of the offending chemicals by any means possible, hence the vomiting and diarrhea.  Well, one of the surprises shouldn't have been a surprise at all.  Just like an allergy to offending pollen and unusual flora or fauna, the sinuses and eyes weep in vain attempt at ridding itself of the cell-munching toxins.  

Well, when you don’t have a single nose hair to act as a dam of sorts, the watery mucus comes streaming out without provocation, usually at the most inopportune times.  This may not sound like a big deal, but combine the runny nose, blood-shot weepy and crusty eyes, bald head, IV tracks and bruises on my arms, and skinny frame.  You are left with the likes of a junkie that would do Spike Lee and Guy Ritchie proud.

Tears…

It just got real…

Since my diagnosis, I was consumed first with finding the very best medical team in the country to treat my disease.  With that checked off the to-do list, in large part due to the research and efforts of my Nina, Terri Gallardo, I quickly became occupied with managing the side effects of chemo, as well as the added side effects caused from managing the first set of side effects, abd so on.  To say it's been a painful and exhausting journey thus far is akin to comparing a stubbed toe with the loss of a foot. 

However, managing side effects has been a difficult and welcome distraction compared to the direction I now find my mind drifting.  With one more chemo treatment remaining, I can’t help but think about what comes next: surgery, radiation, Isie’s wedding (-: then more surgery, and possibly more chemo.   None of that would bother me if I hadn't starting reading up on my odds of recurrence and survival.  

Since this process began, I intentionally avoided reading up on such things.  I figured I would find the best damn medical team in the country and let them worry about the details.  However, the more organizations and foundations that become aware of my condition, the more disturbing studies I receive and thus, the more fear creeps into my psyche.

There was no hiding from the potential eventualities of a cancer diagnosis when my friend and neighbor passed away a few weeks ago.  

Ray...

"Concert in the Kitchen"

Ray would hold and sway Niamh for hours. One day he handed her back to me and said "I can't get too attached. I won't get too attached.... Never mind, giver her back to me, I'm attached and I love her.  I just don't want to leave her."

Ray and his little snow bunny princess Niamh

Ray loving Niamh the night she was born

Ray lived, laughed, loved, and shared until his very last.  I miss him dearly and promise to endevour to fight this disease with as much piss and vinegar, laughter, and love as Ray.  For the record, Jimmy asks to see his "DaDa" every day, Graham still can't get used to working in the garage late at night without you banging on the garage door in search of a beer to share, and I don't know if I will ever open a trunk full of groceries and not expect you to come bounding over to help me inside. We love you and miss you everyday.  I will see you soon... not too soon though...    

Chemo seems to have quieted the Banshee for now.  My oncologist cannot feel a tumor of any size in my left breast, nor can he feel my sentinel nodes in my left underarm.  This obviously points to a more optimistic prognosis, but is by no means a promise of a permanent cure.

My Banshee’s wail may be silenced, but she is still there trying to find her voice, while I work my ass off to suppress it, like a toddler at Mass.

In loving memory to our friend and neighbor Ray.  

Tiff

Episode 4

"Let's start from the very beginning, a very good place to start...," excuse me while I enjoy my Fraulein Maria moment.  

The original intent for posting on the Banshee, informing friends and family about my diagnosis and prognosis.  With a family as large as mine, I thought it best to keep everyone updated in one centralized place.  The idea was to spare Graham or me from repeating the same sad story over-and-over.  I also hoped to prevent the nasty game of telephone or text, which inevitably distorts facts and exaggerates details.

Lately, writing or even thinking about what I might write next, has become more than just a means for continuing to update friends and family on the ups and, lets face it, mostly downs of breast cancer and breast cancer treatment.  Writing, even planning to write, is cathartic, a mental and emotional outlet, a means of venting, part of how I choose to process, name your 90's psycho-babble cliche.  

To be honest, I loathe talking on the phone.  I am a big believer in non-verbal communication, and as many of you know I talk with my hands, even my whole body if I am on a good one.  Thus, I often feel inept getting my point across over the phone and equally void of sufficient feedback.  

Between fighting breast cancer, potty training a 3 year-old, and teaching a 9 month-old how to walk, I am too drained to respond to every text, e-mail, or private message.  

When I do respond, I have so much Mommy-guilt it is ridiculous.  In my anxiety-riddled, A-type head I think to myself: if I am well enough to be chatting, texting, e-mailing, facebooking, house-cleaning, or working, I should be downstairs helping my friends, family, neighbors, and nannies raise my children.  

The result, I don't update the Banshee near as often as I should even though it is a more efficient means of disseminating my truth, my story, my reality without having to spin that record for everyone that loves and cares for me after each doctor's appointment or chemotherapy fumble.  Doing so once to Mom, twice to Dad, and a third time to my husband is depressing enough.

Why the all the excuses?  Well, my sweet friend from high school, Eleonora, sent me a private message this evening.  Like so many other old friends and new friends before her, the sweet message is filled with lots of love, concern, support, curiosity, encouragement, and lots of questions. Three things occurred to me: 

One, everyday someone or something such as Eleonora's message reminds me that I am truly blessed.  I am surrounded by amazing people, angels really.  The support from family, friends, neighbors, acquaintances, and people I never knew or barely knew, is incredibly powerful and life-affirming.  Their love and support humbling.  

Then, of course, my Irish-Mexican Catholic guilt kicks in and after chronicling all my many faults and numerous life-mistakes, I start to wonder if I really, truly deserve all the kindnesses and blessings bestowed upon me on a daily basis.  With humility, and let's face it, a bit of desperation, I resolve to not to think about whether or not I deserve the support of all these angels, and just humbly accept it with an open heart and immeasurable gratitude.

Two, I really need to keep my angels better informed.  Therefore, I promise to update The Banshee more regularly.       

Three, As Fraulein Maria sings "Let's Start from the beginning..." I need to go back to the beginning.  I started The Banshee with diagnosis and prognosis, but not much about how I arrived there.  Understandably so, most of my female friends and family have at one time or another expressed curiosity and concern about how I contracted breast cancer, how I found it, and of course why?  

Embedded within these messages are deep threads of concern for self-preservation. It is scary to think a young contemporary, healthy and fit should contract such an aggressive form of cancer.  It's even scarier to read all about the hell that is breast cancer treatment.  If the roles were reversed, and I was reading Eleonora's Facebook posts and blogs about her battle with breast cancer (God-willing, this NEVER happens), I would be scratching my head wondering how someone so healthy and active could possibly contract breast cancer.  If I'm forthright, my very next thought would skip to wondering how the hell I prevent catching that train ride.

To date, I have not addressed these concerns with the exception of my doctors as we explored possible risk factors.  Truth be told, I don't want to scare everyone, but if it prompts one of you reading this silly little blog to start checking your breasts... not just tonight after you finish reading this... but on an on-going basis, then it's worth your fright and my annoyance with repeating the story yet again.  

Therefore, consider this Episode 4 of my Ulysses.  Unless you're a whole lot smarter than me, reading Episode 4 first is essential if you've got a chance in hell at understanding anything going on in the first 3 Episodes.  Not that I'm comparing myself to the genius of James Joyce... ah forget the humility bull shit! You know what I mean! 

Episode 4

Niamh (pronounced Nee-ve), was born on October 21st, 2013.  Like my son before her, I chose to breast feed Niamh. Incidentally, breast feeding is second in pain only to chemotherapy.  Yes, I remember pregnancy, labor and delivery, crashing my motorcycle, and fracturing my back and neck.  I often tend to draw comparisons between pregnancy and infancy with breast cancer.  For example, women love to share the gory detail of labor and delivery, but no one ever tells you how much nursing your child, even your second child, will hurt for the first 4-6 weeks. All the literature tends to prey on Mommy-guilt by listing all the benefits for you and baby, yet conveniently leaving out the cracked and bleeding nipples, referred nerve pain, blocked milk ducts, flu-like joys of mastitis, hours of fun hooked up to an udder-pumping machine, etc.  I digress...

However, one of the many benefits happens to be a dramatic reduction in the percentage of breast cancer in women that chose to nurse their children. Well, we've always known I was special.  Nursing two children did not prevent breast cancer in my case.  Nor did being an athlete my whole life, running an average of 40-60 miles per week, drinking alcohol moderately, drinking 3-4 liters of purified water per day, or eating all organic meat and produce.  This is the one time in my life I can say without guilt or hesitation, I did everything right.  After watching my Nana die of the disease, I went out of my way to prevent cancer, specifically breast cancer.  I read books and scientific papers on the bloody topic.  I drank soy protein shakes with whole flax seed everyday for 14 years, because a UCLA research study I read showed a huge reduction in breast cancer among those cultures that ingest whole, unrefined flax seed, soy beans, soy products, and ate a healthy more Mediterranean-like diet.   

As most of my fellow breast feeding Mommas and their partners can tell you, breasts get large and lumpy while nursing.  When your milk "comes in", it fills the milk ducts, or glands, making the breasts larger, harder, and lumpier.  It is often necessary to knead or massage the breasts while nursing or pumping in order to completely empty all the milk ducts. Otherwise, Momma faces possible engorgement, embarrassing leaking, and ultimately mastitis (an infection of the milk ducts, which causes severe breast pain, and flu-like aches and pains).  

The one thing I must admit is the fact that I never gave myself breast exams.  In fact, the only time my breasts are ever physically examined is at my yearly OBGYN appointment or when Graham feels frisky. 

When I first started nursing Niamh, I noticed what I thought was a knot or blocked milk duct on the left side at approximately 3 o'clock.  It seemed to get larger before nursing, then smaller after nursing or pumping, but it never completely disappeared.  

Around the end of March, or beginning or April, I noticed my "blocked milk duct" growing significantly.  So, I ignored it.  What else do you do, but make up excuses and non-breast cancer explanations for it!?!

I figured I would either be able to work-it-out myself or come down with mastitis again, take some antibiotics, and all would be well.  The truth is, I was working overtime to bury my instincts and gut feelings.  

I told myself "I'm far too young for breast cancer".  I'm healthy. I only eat organic. I'm not overweight, I nurse my children, I don't drink soda or anything with aspartame, nor any other drinks or foods that include ingredients I can't pronounce, I run marathons for Christ's sake!  I never smoked. I don't drink to excess, (not since college anyway).  I don't have a family history of breast cancer, except for my maternal grandmother, who was postmenopausal and enjoyed 30 years of HRT (Hormone Replacement Therapy).  HRT is known to cause breast cancer with prolonged and/ or excessive use.

Finally, my "blocked milk duct" was so large that I let my step mom feel it to get her opinion as an ultrasound tech that often moonlights at the Mission Hospital Women's Wellness Center.  She seemed concerned by the size of the lump and strongly recommended I let her give me an ultrasound, or go to my OBGYN for a referral to the Women's Wellness Center.  So, of course, I ignored her.  What else do you do when you're trying like hell to deny the possibility no matter how plausible or remote.  

A few more weeks went by, but I could not stop thinking about and touching my "blocked milk duct".  Feeling frustrated that it would not go away no matter how many hot shower massages and warm compresses I applied, I finally picked up the phone.  

On Monday, April 21st, I went to see my OBGYN who said "my gut feeling is that it is not cancer, but more likely a glandular adenoma."  I was so relieved. Glandular adenoma didn't sound like a party  It is a condition whereby a milk gland starts growing out of control and can't always be treated without ceasing to nurse or an outpatient procedure.  However, "out an abundance of caution", she sent me to the Women's Wellness Center for an ultra sound.  

On Friday, April 25th, a truly lovely woman named Lynne gave me a breast ultrasound, and told me everything I needed to know with her facial expression.  She sent the image to the in-house radiologist who ordered an immediate mammogram.  After 15 minutes of that medievalesque torture device, the doctor reviewed the images and decided I needed and immediate biopsy.  Being late Friday afternoon, most of the staff were either physically gone or mentally checked out, so the biopsy was scheduled for first thing Monday morning.  

Before leaving I asked the doctor what his gut feeling told him.  His response, "...if it's a glandular adenoma, it's by far the largest I've ever seen.  It is nearly 7cm or roughly the size of a cutie orange.  My fear is that it is cancer. The anomaly is large, it has irregular borders and it is solid, meaning there is no fluid or fibrous material going through it like a cyst for example."  Coming from a man who only reads breast imaging and pathology all day, I knew I was looking at some bad news.  In my mind, that was the day I was diagnosed with breast cancer.   

Monday morning they performed an aspirating biopsy.  After that pleasure cruise, there was nothing to do but wait two days for the pathology results, which of course confirmed what I saw on Lynne's face five days prior.  

The truly scary part, there are no answers to the questions everyone really wants to know.  How did I get breast cancer? I don't know. I have ZERO risk factors.  Pathology found that my cancer is triple negative, meaning my cancer is not driven by, nor can it be treated with hormones (estrogen, progesterone or HER2). Therefore, being on birth control pills for a number of years was immediately ruled out as a possible cause.  Genetic testing proved that I do not posses any known breast cancer genes, such as BRCA1 or BRCA2.  So, for once, I can't blame my parents, their genes or my heredity. Damn!

One of the most difficult things for me to wrap my head around is that there are no answers to "why or how?"  Like death and taxes, it just is. I don't wear deodorant anymore and I only eat grass fed beef now instead of just organic beef, but where does that end?  We can't possibly take out all the plastics and chemicals in our lives.  We have to drink water and eat to survive, no matter how much garbage is in it or processing involved from field to table.  It seems impossible to escape the environmental stresses we put in and on our bodies everyday.

So, the moral of the story and my Public Service Announcement for the night is this: TOUCH THYSELF! Get familiar with your breasts. Learn how to check your breasts and teach your partner how to examine your breasts.  Yes, teach your partner to give you breast exams.  Why not let your partner give you a breast exam?  They'll enjoy it, I promise!  You will feel less awkward feeling yourself up.  Your partner will probably be more thorough.  Unless you are dead tired or have an newborn in the house, it will probably lead to a happy ending in more ways than one!   

Cheers!
Tiff

PS Please keep the prayers, cards, messages, phone calls, texts, food and small gifts coming.  I may be too tired or mom-guilty to respond right away, but they really do brighten my day, inspire me, and help me keep the faith.  The depth of my appreciation for all of you and your generosity is boundless. Thank you.

Here are a few pictures from my cancer binder.  I put a few of the many gifts and notes of encouragement on it.  I promise your words and gifts do not fall on deaf ears or an ungrateful heart.  These are a small fraction of the gifts, notes, cards, etc. that I keep readily visible around my home and in my purse to remind myself there are a gaggle of angels behind me that are counting on me and helping me to fight the good fight. 

Front

Binder

Back

Round 3 to the Banshee

I hesitate to write this post.  I suppose I hesitated to write all previous posts as well, so who cares!?!  This one is particularly difficult, because there is no way around it, I lost this round and I am still struggling to get up off the mat.

Don't get me wrong, the first two rounds of chemo were tough; unpleasant to say the least.  The third round... well let's just say the Banshee is whaling loudly and she fights dirty.

The third "cycle", or round of chemo was Thursday, June 12th.  At my one week check-up on Thursday, June 19th everything "looked good".  The tumor shrank yet again and I was managing the chemo symptoms reasonably well.

However, the doctor thought I might be coming down with an upper respiratory infection. Therefore, he prescribed a Z-Pack (antibiotics).

Well, this set off a chain reaction of absurd, yet debilitating ailments.  The first of which, Thrush, otherwise known as a yeast infection of the mouth, woke me up on Saturday morning with spectacular pain.

I have a new found respect and sincere empathy for babies that suffer from Thrush.  It is excruciating.  For the ladies out there, imagine your worst yeast infection, multiply it by 20, then put it in your mouth.  For the men out there, just listen, try to sympathize, and trust me when I tell you it hurts, a lot.  Anything and everything burns and stings as it crosses the tongue and gums, including food, water, and eventually air.  By Monday at 3:00 am, it hurt to breath through my nose and became laborious and painful to swallow as the Thrush found its way down my throat.

For extra fun, the chemo/ antibiotics mix also caused a severe allergic reaction on my chest, arms and legs.  The urge to scratch the hell out of myself was almost more than I could take.  I slept on my hands!

Chemo significantly weakens the immune system, so I stubbornly refused to go to the ER in order to avoid exposure to more germs.  Instead, I opted to grin and bare it until the doctor's office opened Monday morning.  He prescribed an oral Nystatin rinse for the Thrush, a Lidocaine rinse for the pain, some Hydro-cortisone 2.5%  for the rash and promised he'd get me through this.

Concerned that I had not eaten since Friday, nor imbibed a sip of water since Saturday, the doctor ordered IV hydration at the treatment center. As it turns out, I would need IV hydration three times that week.

Come Thursday, June 26th, my scheduled time for round 4, the doctor determined that I was still too ill and weak to receive chemo.  I was crushed.  My disappointment was repeated the following Monday and then again yesterday, July 2nd.  It is a truly strange reality to be so upset over not receiving an agent that causes such horrible symptoms and pain.  However, this agent is saving my life and I try really hard not to lose sight of that fact.

Unfortunately for me, the Thrush gave way to mouth ulcers or canker sores across the inside of the cheeks and tongue.  The largest of which is the size of a dime on the bottom left side of my tongue.  My Dad, an orthodontist, and my cousin, a dentist both said it was by far the largest herpatic ulcer they had ever seen.  A true honor for me!

The virus infiltrated my lingual nerve, so never mind the stinging and burning as I swallow or anything crosses my tongue, let's talk about the referred nerve pain shooting behind my left ear, down my jaw and under my chin.  Good times!

As of tomorrow, it will be three weeks since my last chemo treatment and two weeks since I last ate solid foods.  I am finally on some steroids and anti-viral medication for the mouth ulcers, but who knows which lovely side-effects these medications might cause.  I'm breathless with anticipation!

I can feel the tumor starting to grow back as it takes advantage of my compromised health and inability to receive chemotherapy to beat it down.  I try really hard not to cry.  I have to be pragmatic about shedding tears.  It's still very painful to drink water, and I can't waste the fluids.

I may have lost my hair, sense of taste and smell, twenty pounds, and a bit of pride this round, but as I see it I am still up 2-1 on the Banshee with 5 rounds to go.  I will not lose.  "No pain, no pain, no pain...".  

As always, thank you to all the friends and family who step up to help us in countless ways.  I remain grateful for the flowers, cards, prayers, positive energy, messages, and dinners for Graham and the kids.  Please don't be offended if I do not respond to your phone calls, it really hurts to talk.

With a little bit of luck and by the grace of God, I will be ready for battle again on Monday.  In the meantime I hope everyone enjoys their Independence Day festivities.  Please enjoy a beer and a burger for me, while I plot my revenge on and independence from cancer.

Love,
Tiff  

      


       

What is a cynic...

A man that knows the price of everything, and the value of nothing. - Oscar Wilde

I keep telling myself and everyone else that it's a small price to pay. Like a mantra, it's a small price to pay, it's a small price to pay...  At a macro and intellectual level, it really is a small price to pay. I appreciate the value of life, my life, my family, what I have yet to contribute, etc. and I am willing to fight for them. I am fighting for them. 

I can't lie and I don't feel like sugar coating it. Right now it feels like a pretty fucking huge price to pay. 

I haven't eaten in almost three days because there are sores/ ulcers on my tongue and gums that are so raw mouth breathing hurts, drinking water makes me cry, and swallowing even a sip of protein shake makes me gag. 

The solution: a lidocaine, Maylox, liquid Benadryl cocktail that has me running to the loo with urgency every few minutes. The beneficial numbing affects of the cocktail only last long enough to down some water or pedialyte. 

Don't get me started on the severe rash on my hands, feet, chest and arms that blisters with the slightest bit or sliding pressure to the skin or exposure to anything other than luke warm temperatures. The rash and blisters make it difficult to walk, painful to shower because of the water temp, and nearly impossible to hold or feed Niamh. 

All of this reminds me of pregnancy. Everyone loves to tell you horror stories of the labor and delivery, but no one ever talks about the pain and anguish of breast feeding. The same holds true for chemo. Everyone knows about the nausea and hair loss, but no one  talks about the debilitating mouth sores, rashes, dehydration, and weakness that render a person disabled for all intents and purposes. 

The only reason I sit up and wait for my oncologist's office to open is to avoid the germs in the ER, which can be detrimental to someone like me with extremely low white blood cell counts. 

The tumor is shrinking. It went from ~ 7 x 5.5 cm before treatment to ~ 1 x .5 cm at last check. So, I do understand the value of chemo. I am not a cynic. Chemotherapy Is saving my life, but the price is dear, very dear. 

Tiff

Hurt

My nurse Carrie

Again, I struggle with how much to share.  It seems peculiar, narcissistic even, to think anyone outside my husband and parents want to know the intimate details of my dance with cancer.  After all, who am I to merit the attention, sympathy, prayers and support of so many?  Perhaps with the addiction to paparazzi and social media, the blurred lines between public and private are no longer.  Maybe it’s the rubber-necking car crash syndrome? Tell me, can you honestly say you don’t sneak a peek as you drive by?

Either way, after this last week, I am filled with the knowledge that I am genuinely loved and cherished by many. I am astonished and deeply humbled at the outpouring of love, concern, and aid.  I am overwhelmed by the messages of love and support via text, phone and Facebook.  Please keep them coming, even if I don’t have the energy to respond. right away. They really do help!  

I am eternally grateful for those that send their prayers, energy, food, scarves, books, jokes, and the really hard stuff like time and energy.  There’s Kimmy and Amber who give me their hard-pumped breast milk for Niamh.  Then, there’s cousin Ruben who takes care of the big picture stuff.  Cancer or not, I am blessed with family and friends like Jenna, Lala, Bailey, Nonnie, Auntie A, Niamhie, Nino, Aunt Terri, Damian, Marie, Becky, Melissa, Mom, Dad and so many others who tap every available resource, use their sick time, spend their days off, take breaks from their own kids, etc. to come and mind my children so I can sleep.  There are people out there I hardly know, or haven’t known well in a long time that have come to my rescue with resources, kindness, and solidarity like Chris Griffith and Aoibheann Clarke.  Rest assured my Mom instilled the importance of sending proper thank you’s.  Come hell or high water, I will thank all of you and everyone I fail to mention here as I am able with proper written notes.  In the meantime, please rest assured that every single word of encouragement, minute of time, and morsel of food is truly appreciated.  Therefore, I reluctantly continue to put the details of my fight out there for all to follow. 

It had to be blood RED! 

One week ago today, a nice enough nurse named Carrie rattled through her chemo version of the “please keep your seats and tray tables in the locked and upright position” speech for all newbie and veteran travelers alike.  Poor thing, she tried so hard to sound upbeat and genuine, even attempting some wrote jokes pocketed after years of breaking the ice with scared-shitless first-time chemo patients. Carrie makes a valiant attempt at the impossible, allaying the anxious mind of a newly diagnosed cancer patient, twenty to twenty-five years junior to anyone else in the room.  What Carrie with her pores still leaching beer from last night’s delights and quarter inch roots doesn't say is the truth. The truth is no matter how many times you hear the speech about the flotation devices and emergency exit lighting, nothing prepares you for crashing.  Mountain, desert or sea,. it doesn't really matter, you are going down.  No half-hearted pithy joke, adivan, or zofran can possibly prepare you for the mental, physical and emotional crash resulting from the large red plunger going into your arm.  You simply say your prayers, hold on tight and fight to survive.

I felt the effects within three hours of leaving the treatment center.  Until then, adrenaline, adivan, and steroids fooled me into thinking I was stronger, tougher, and more capable than is the case.  When reality set in, it hit hard. The anti-nausea drug, Zofran, was akin to throwing a bag of fireworks on a bonfire as a friend (uh huh, Jeff Pack) infamously did in high school.  It exacerbated the nausea by adding heart burn and acid reflux to the mix. Unfortunately, none of the meds designed to combat chemo symptoms did anything but make matters worse.

Then, a friend and fellow cancerite arrived with some marijuana.  I've never been much of a fan. Yes, I've tried marijuana. Yes, I've inhaled marijuana. Yes, I've even been stoned.  Ask my closest friends in high school and college, I just wasn't into it.  It never bothered me, but weed just wasn't for me.  Well, it is now baby! 

The effects and benefits are instantaneous.  I do not have to smoke much at all or get anywhere near stoned. I simply inhale once or twice at a time to feel the immediate relief from debilitating nausea, acid reflux, headache, bone pain, etc.  I called my doctor immediately to explain what I was doing. He was delighted and said “I’m glad we know what works for you now”.  He went on to apologize that he could not prescribe it himself as he is regulated by a federal body.  The synthetic version he prescribed previously only exacerbated the above mentioned symptoms.

A little bit of weed and a lot of sleep seem to be my only answer to chemo.  A lot of sleep! In the first six days post-chemo, I slept an average of 18-20 hours a day.  It is gut-wrenching to hear your children being looked after, tended to, and comforted by family and friends downstairs while the best you can do is roll over and go back to sleep.  I didn't always hear their cries, but when I did, I tried to force myself to wake up, get up, walk downstairs, put a smile on, and let them crawl on me as I sit on the couch, because picking them up was not an option. Unfortunately, nine times out of ten my body would not let me.  My husband continually reminds me that resting, sleeping, taking my drugs, and exercising when possible, is the best way I can take care of my family long term, and that is the goal; to be here long term for my family.  So, I wake up everyday with my son, go for a 3 mile walk/ jog, come home, shower, and go back to sleep for the better part of the rest of the day. 

    

Today I feel alive.  I ate; not just because my body requires something, anything to continue on.  I ate because I felt hungry and the conjuring of any sense of food didn't make me cover my mouth and run.  I held my daughter without fear of dropping her 14 pound little frame, I drove myself to my doctor’s appointment and even made it to the grocery store.  Today was a good day.  Today the Banshee is smaller than she was seven days ago.  Last Thursday, she measured 5.5cm x 7cm from the outside. Today, she came in at 5.5cm x 6cm! The bitch is going down! Today I have hope again.

Thank you!