When it rains...

Well, there isn't much news on the "boobie" side of things.  Yesterday, I went for my pre-op blood tests to see if my Protein C has risen to a more acceptable percentage.  This will determine whether or not I need to go on blood thinners to avoid having a stroke during or after surgery.  I don't think there's much possibility of it rising, because it has remained low for the two years we've known about the problem. 


They have the scientific facts, but all I know is, clotting too much has never been a problem for me.  It's not clotting, when I should, that has been the issue in the past.  For example, when they did my first core needle biopsy, it wouldn't stop bleeding, and I had 3 nurses on the table, pressing on my chest for over 20 minutes.  That doesn't sound like I have blood that clots too much, does it?  Therefore, I'm hoping I don't have to have the blood thinners, for fear I may bleed too much!  Just seems like common sense to me.


The title of this blog is "When it rains..." 


It poured the last two weeks!  First of all, my brakes and transmission on my van were both going out fast.  I felt brilliant for realizing that the school I work in has an auto mechanics class!  I asked the instructor if his class could replace my brakes, and got the parts from my father, who works for a wholesale brake supply company.  The class fixed my brakes on Friday!  I had 5 wonderful days of driving without that LOUD, GRINDING noise, causing everyone to stare at me and my van in disbelief!  It was pure heaven after having no brakes for way too long.  The parts were only $60.  Although I can't even afford that, it was a bargain for having brakes and feeling safe, again! 


Those 5 days were all I had in my glorious little van -


On the morning of the 6th day, It all came to an abrupt, horrifying end!  I was on my way to work - usually a very peaceful, smooth drive up a one lane "highway" from my town to the town I work in only 8 miles away.  As I drove up the road at about 50 miles per hour, I noticed a little red car, stopped at the stop sign waiting to cross the road I was on.  There are no stop signs on the road I take, as it's the main road between the only two towns in the area.  As I approached the intersection, the woman driving the little red car suddenly decided to gun it across my road only about 30 to 40 feet RIGHT IN FRONT OF ME!  The timing was perfect - IF SHE WAS SUICIDAL!  There was no time to brake, but I did yank the steering wheel as hard and fast as I could, to try and lesson the impact and avoid hitting her head-on.  After hitting her at 50 mph, I careened off her and hit the side of the embankment straight on, flipping my van and landing in a ditch, upside down with my tail end in the air, in more ways than one. 


Hanging there, upside down, in my seat belt, I realized the engine was STILL RUNNING, and I noticed a lot of fluid "raining" down the outside of my now shattered window.  My legs didn't seem to work, and there was an intense pain radiating through my left leg.  My mind raced to the other driver in her little car.  I thought her car had to be smashed to bits.  I could hear the other woman saying over and over, "Hello, are you okay?"  I looked out the passenger window, to see her legs.  She was just standing in the middle of the road, calling to me over and over, but never coming around to see how I am or help me.  At least she was okay.  By this time, I was already calling out for help, but she must not have heard me.  I found the ignition and turned off the engine, then went to work on getting out of there.  My seat belt wouldn't come undone.  I was finally able to use my arms, pushing against the roof of the van (remember I'm upside down) to hold my body up and loosen the seat belt enough to get it to release.  I fell to the roof, covered in glass, and inched my way out the broken window, on my bottom, using my arms to pull the weight of my body out onto the dirt.  My legs weren't working at all, and the pain in both knees was unbearable! 


By this time, several people had stopped to help.  Thank you, to whomever stopped!  I never did get their names.  Three men worked together to pick me up and take me across the road, for we were all afraid the van would blow up.  Everything from that moment until the ambulance ride happened very quickly.  Someone had said they called 911, a woman who seemed to be an off duty EMT, began examining me, another woman wrapped me in a blanket, someone had called the school to tell them I wouldn't be coming to work, and finally, a doctor on his way to work stopped at the scene and began checking me for broken bones, concussion, etc.  What I hadn't realized during all this is:

My son, Christian, was on the school bus only moments behind me!  I never saw them pass, but he said I was on the ground surrounded by people when they passed.  Having worked at my son's school for the last 3 years, every kid on that bus knew me well.  They all panicked, and as soon as they arrived at the middle school the entire school knew I had been in a bad accident.  My poor son must have been freaking out, but he never admitted that.  All he said later, when I asked him, was that his friend, Rachel, saw my face and told him that she thought I was okay!  He apparently decided to take her word for it, and remained calm. :-)

I am okay.  My left leg hurts pretty bad, but the doctor in the E.R. said I don't have any broken bones.  I have a brace for my leg, but today is the first day I have gone without it - so far!

That was just part of my week.  To top things off, my best friend and I got in a horrible fight, and may never be close again.  I think that hurts more than the accident ever could.

With all that "rain,"  I am still looking on the bright side, really.  I am SO lucky that I wasn't hurt worse in the accident.  I am SO lucky that there was no one else in the van with me, especially my kids.  I'm so glad that the other driver wasn't hurt, even though I want to slap her silly for doing what she did. ;-) I am pretty lucky that this means I will get some money to replace my vehicle, and I needed money badly for my time-off during my recovery from the mastectomy.  I will hope I don't need to use much, because I still need a vehicle, but knowing I have that as back-up helps ease my mind.  

I should have named this blog "I'm SO lucky!" 

JUST TODAY!

Okay, so my posts up to this point are really long and detailed.  I just wanted to "record" the events that led up to this point.  We're still not quite caught up, but I want to start more of a "this is what is happening today" blog.  That really is the intention of the entire blog.

Today, I am officially 4 weeks exactly away from the MOST MAJOR surgery I've ever had, or hope to have in my lifetime.  Although mastectomies and breast reconstructions are fairly common and routine, as far as the medical community is concerned, it's still a long, complex surgery, lasting several hours.

Add to the "normal" risks the fact that I have this pesky blood clotting mutation/disorder/risk/complication, and there is a slightly elevated anxiety - both for the doctors and myself. 

So, today, my mind wanders to the "what if"s.  Granted, I am truly NOT STRESSED over these issues, just contemplating what I would, or should, do in case the worst case scenario were to occur.  Sadly, there is that chance.

The only reason I am even thinking about the possibilities mentioned by the doctors - stroke and blood clots, resulting in memory loss, loss of bodily functions, perhaps becoming a vegetable - is because of my children.  My boys are 10 and 12.  My daughter is 21, but still has so much ahead of her that most girls need their mother for - marriage, childbirth, child rearing, etc.  I REALLY don't want to leave them without a mother at this stage in life, or worse yet, with a vegetable for a mother, that they visit and pity.  I want to be someone they can count on and lean on, and get advice from.

So, today, I am thinking, "What if I REALLY DO only have 4 weeks left to live?"  What would be my priorities? 

1. Write each of them a long, long letter, trying to express how I feel about them, my own personal hopes and dreams for them, and any general life advice I might be able to give them from my own experiences over the years.
2. Write down my wishes for their care in the future.  Ultimately, that would be left up to their father, but he will need a lot of help and advice.  Who would I hope he turns to for this?  Who would I want my children going to for advice now that I'm not around?  They will need a "motherly" figure in their life too.  It's a huge burden for Jessica, if she tried to fill it.  I think she's going to have enough to deal with in her 20's without being an instant mother to my boys.
3. Make some kind of living will.  I have a lot of debt, and almost no assets, and I don't want the family spending all their time and money caring for me.  I don't want the boys being "forced" to visit their mother, if they are not comfortable with that.  At the same time, if I were just well enough to live at home, but still had major physical issues and needed a lot of help, I don't want them to be forced to take care of me!  That is the worst scenario as far as I'm concerned.
4. Hug my mother.

That's about as far as I've gotten on my MAJOR priorities list.  Of course, I have a little list in my head of things I would do/accomplish in the last four weeks of my life, just for fun and satisfaction - my "silly" list, when compared to the important issues.  

• Play "Born Under a Bad Sign" on Jed's bass with the Fast Lane Blues Band at the Horseshoe Curve ;-)
• Put my toes in the sand at ANY beach one more time, and taste the salt water on my lips.
• Eat a great lobster dinner!
• Dance all night!
• Sit in a hot tub until I wrinkle like a prune.
• Shake Chris Robinson's hand and tell him how much I love his lyrics and how much The Black Crowes' music has gotten me through the tough times for the last 20 years. (This almost happened once, but I chickened out!)
• Have a BIG party with live music [We're dreaming, right?  So, maybe Kelly Bell, Paul Pfau (playing the blues, not that other crap LOL), and most importantly the Fast Lane Blues Band - since I'm stuck on the east coast, west coast would include many others and they know who they are! :-) ], surrounded by my closest friends, laughing, joking and dancing all night long. This has happened many times. I just wouldn't mind one more time!

Thanks for "listening," and have a GREAT day! :-)

Deflation...

At the point we left off, I knew my breasts were ready to blossom with cancer, if not already hiding more cancer in my "very dense breast tissue."  When I finally met with my surgeon, she told me what I had already discovered.  She said that she needed to remove the area containing the calcification and atypical hyperplasia and examine the tissue for cancer. 


Back to the hospital for another exisional biopsy - my second one on my left breast in less than a year.  I was told the scar would be as small and hidden as the first.  That was a lie.  I woke up to discover a slice across my breast almost 2 inches long, about an inch above my nipple.  I was really thrown by this.  Granted, it has healed nicely, but it IS very noticeable.  To top everything off, it's as if someone has begun to deflate my left breast.  I'm sure it's not that obvious to others, but when I look in the mirror, IT'S JUST NOT RIGHT!  (At least that's what the little girl inside me wants to scream at all of the doctors!)


Once again,

I waited, and waited, and waited

for the results, to see if they found anything else in the tissue they had removed.


The doctor informed me that there was no real new information.  The atypical hyperplasia is very evident, and both breasts are likely to have it throughout.  I had a couple of options, but none that made me want to jump up and celebrate.

My surgeon began drawing pictures on a whiteboard and explaining the unpleasant fact that my breasts were very likely to develop INVASIVE CARCINOMA within the next 5 years.  Invasive carcinoma is the "bad" breast cancer - the kind that is much harder to stop and invades the lymph nodes, as well as other parts of your body.  The kind developing in my left breast was still "in situ,"  which means it's just sitting there, contained in one little spot - easily removable and containable. 

We both knew then and there, in our guts, that the "bad" cancer was coming soon.  Too many changes had taken place in the last year.  My breasts were constantly changing and hurting, and the cells were going nuts (mutating and multiplying too fast).  My surgeon gently approached the subject of mastectomy.  As soon as she had finished explaining the situation, I blurted out,

"Let's do it!  Let's just get this over with.  Take them so I never have to worry about this again, and I can finally GET ON WITH MY LIFE!"  

She let out a noticeable sigh and gently smiled, telling me that it is a good decision.  She told me to see the oncologist and plastic surgeon first, to have all my questions answered and truly evaluate the pros and cons.  But, we both knew it was just a matter of time and that I would need the double mastectomy either way within the next couple of years. 

If I don't do the mastectomy now, I will need more tests at a minimum of every 6 months, cancer preventing medication (as recommended by the oncologist), and eventually, chemotherapy and/or radiation, once the cancer becomes invasive.  The cancer preventing medications I am referring to are to prevent or block estrogen, which sometimes accelerates breast cancer.  There are many side effects associated with the medication.  I'm currently on estrogen due to early menopause caused by my hysterectomy.  I already know how I feel and act without estrogen.  Believe me, you don't want to see me that way!  All these precautions, plus the constant anxiety and stress of waiting and wondering with each month and each test, were reason enough to put a stop to this right now!

The decision was made, and so the very lllllloooooonnnnngggggg process began...

My return to the cold harsh reality...and climate

Back to reality...

My return to Maryland after an amazing summer in California was not a happy occasion.  California is where my entire extended family lives and where I lived for the first 30 years of my life.  I have no family here in Maryland except my children and my estranged father...emphasis on "STRANGE!"  I took both my boys, Christian & Jake, to California with me for the summer.  I wanted them to experience what it is like to have a close-knit family connection.  They have never experienced anything like that, and I feel responsible for cheating them out of a very important part of childhood and life by raising them on the east coast, away from any aunts, uncles, cousins, and great-grandparents...emphasis on "GREAT!" 

The boys meeting all those relatives was awkward in the beginning, but, by August, my boys had bonded with the entire family! They fit right in like they'd been raised there all their lives!  :-)

August and September 2011 were filled with so many changes, career and otherwise, that I would need another blog entirely to fill everyone in. 

While away, I did receive a notice in the mail from my breast surgeon.  It included a referral for a mammogram to be done in November.  Nothing was mentioned regarding the multiple cysts discovered the week before I left.  I had thought a lot about them during my vacation, and knew I didn't want to aspirate nine of them.  That just sounded like a lot of work and discomfort for not much reason other than my comfort.  The biopsies on the larger cysts did sound like a good idea to me, just to make sure they weren't malignant.  

Nonetheless, I have procrastination down to an art!  So, I didn't schedule that mammogram until November, and I never asked the doctor about doing the biopsies.  I figured the mammogram would show anything we still needed to address.

The mammogram was to be on the right breast only, due to the issues with it in May.  Unfortunately, or luckily, I felt a painful, solid lump in the left breast, again.  So, during the mammogram, I requested she check the left breast.  She called my surgeon immediately and obtained permission. 

Here we go, again!  The technician noticed something "suspicious" on the mammogram of the LEFT breast - the one they weren't even going to check!  He ordered a sonogram immediately.  Nothing was said regarding what he deemed suspicious.  No measurements were taken during the sonogram.  The right breast with "multiple cysts" was completely disregarded at this point.  All focus had shifted to the left breast.

Next thing I knew, they escorted me out and sent me home.  "Your doctor will contact you in a few days."

Again, my need-to-know-RIGHT-NOW gene kicked in.  I only had one word to go on, which I overheard as they technician spoke with the sonographer - "Calcification."

I spent hours upon hours each night researching breast calcification.  1) There are generally two types of calcifications, and it DOES make a difference which type they see.  2)  The previous lumpectomy could definitely cause the larger calcifications found in areas of healed wounds or incisions that aren't a cause for concern or further investigation. 3)  Microcalcifications found in an organized shape CAN be a sign of cancer.  

I went for my results from the lab before the doctor ever contacted me.  Again, I researched everything written in the lab report.  The report stated that mine were microcalcifications, not related to the previous lumpectomy.  :-(  A STEREOTACTIC biopsy was recommended.  No, there's a new word to look up!

A stereotactic biopsy is a very odd, unpleasant procedure!  A man had to have been the one to come up with this crazy contraption!  If you google images of this you will see what I mean!  The woman lays on a table, face down, with her breasts hanging through a hole in the table. The hole in this table was so large that I had to hold myself up in an awkward way, so as not to fall through.  While balancing myself over this hole, the technician squeezes what little breast tissue I have between two flat acrylic plates to compress the breast and hold it still while they cut chunks out with a long biopsy tube/knife.  During the procedure, they are using an x-ray to see the inside and make sure they are sampling the right area.  This procedure is long, for having to hold that position over the hole.  You can't see what they are doing under the table at all, at least not in the lab I went to, and your breast is numb.  You only feel the "tug" going on while they pull the sample tube in and out.  

I had considerable trouble obtaining these results, as the doctor really wanted to meet with me and interpret them together.  The problem is that they always have a tight schedule, and can't fit me in for at least a week.

Time to wait another 3 days for the lab results!  Waiting, waiting, waiting... YUK!!! I hate waiting!

I picked up my results, and began the research.  This lab report was the most complex I'd ever seen.  At least 2 out of every 3 words were complicated, medical gobbledygook, that made no sense to me.  Nonetheless, i was determined to decipher these results as soon as possible.

The phrase that seemed the most important throughout - atypical hyperplasia - was all over the Internet.  The problem was the location of the atypical hyperplasia.  "Columnar" was nowhere to be found, at least not phrased with the other scientific words in my report.  Atypical Hyperplasia is basically cells dividing, multiplying, building up in an unusual (atypical) way, in larger than normal amounts.  This atypical hyperplasia is sometimes a sign that the cells are "getting ready" to morph into cancer.

Atypical Hyperplasia

In my mind, I immediately started trying to create visuals of this.  The mucous commercial for Mucinex came to mind.  Remember the one with the little green talking cartoon guys setting up their home in someone's nasal passage?  If I were an artist, I could really have created some cool illustrations.  The pictures in my head were actually pretty funny and at least brought a sense of humor to my thoughts regarding all this craziness.  

I imagined little bug like cell creatures setting up for a grand party, hanging streamers and a banner that read "WELCOME HOME CANCER!" and throwing shiny metallic confetti around the room!  

 

Getting on with my life???

To catch you up...

Mammogram (11/2010) = Suspicious Lump = Core Needle Biopsy = Intraductal Papilloma = Excisional Biopsy (basically a lumpectomy) = Getting on with my life! (12/2010)

Following the lumpectomy on my left breast, my wonderful surgeon wanted to have a follow up in 6 months to see how I've healed.  I had plans to go to California in June to see my family, so I went in for the follow-up in late May.  I was experiencing pain in my right breast accompanied by a small lump or two, but I attributed this all to my usual hormonal surges. 

When she examined me, she felt the lumps too, and she had me go to the lab for another mammogram, just on the right breast.  This mammogram was as typical as the rest in the way that the technician ordered a sonogram to examine the "dense breast tissue."  What was different this time was the length of time in the sonographer measured areas in my breast.  It was one measurement after another.  I couldn't quite see the screen, but once you've been through enough of these, you know the drill. 

At last, the sonographer left the room to check with the technician.  The sonographer returned with the technician, who examined me himself as well.  He then, very calmly and politely, said,

"You have several cysts, which may be causing your pain. I believe they are benign, and we should aspirate at least 9 of them. Your surgeon may want to consider biopsying the larger cysts, just to be sure." 

My brain is racing, and my paranoid, anxiety driven thoughts are getting the best of me - inside:

AT LEAST NINE!!! 9???  What????  How, why, is this normal?  It's only been 6 months since they were "fine."  Why is he so casual about this?  Benign or not, are my breasts just supposed to morph into these giant deformed masses over the next year or two?  What am I becoming - an ogre? The Fly?  What next?  By age 50, I'll be a hunchbacked cyclopse, limping down the street, scaring every man, woman, and child in my path?  I have to leave for California in a week!  I can't make all these appointments, spend all this time in the lab, or the hospital, bleeding all over the table all summer.  He said "probably benign." Should I trust that assumption?  What if he's wrong? 

On the outside, I remained perfectly calm and cheerful, as he escorted me to the scheduling nurse to schedule the procedures.  As I was waiting, I thought, "I have two options right now.  Option One: schedule the procedures as soon as possible.  This would mean either postponing or canceling my trip to Cali.  If he's wrong and this is more, I will be in for a long miserable summer.  If he's right, I will be in for a long semi-miserable summer, filled with medical procedures and having missed my trip to Cali.  Option Two:  Wait!  Go to Cali and enjoy some much needed family time with lots of sunshine!  Then, come back and do the procedures in September. 

It was not a tough decision, but still, it left a small knot in my stomach.  I asked the surgeon if 3 months could possibly make a big difference, worst case scenario.  She assured me that it wouldn't.  I opted to wait until September to address my lumps and bumps!  California with my boys was an adventure I wouldn't have traded for the world! :-)

Exactly one year prior to the big decision...

November, 2010...

I went for a "routine" mammogram.  This was definitely the beginning of a very rough year, in terms of health and emotional stress. 

Due to my family history on my mother's side, I was considered a high risk for breast cancer.  Even with this knowledge, I never expected any real problems for the next 20 years.  I often had "lumpy" breasts, and breast pain, which seemed to surge on a 30 day cycle.  Granted, I had a hysterectomy at 37 years old, and was now on an estrogen patch to ease the surgical menopause I was thrown into.  For my height (6 ft.) and frame, my breasts are on the small side.  Each mammogram resulted in the technician requesting further pictures and sonograms, due to my "dense breast tissue" - a polite way of saying, "you have tiny breasts with NO fatty tissue." 

Back to November - I felt a lump a little smaller than the size of a marble, which seemed to stay longer and hurt more than the usual lumps during my hormonal "swellings."  They examined the lump, and decided we should aspirate - stick it with a needle and drain whatever is inside it.  Nothing to worry about, right?  That's what they said.  Piece of cake, harmless, etc.  I believed them.

December, 2010...

Being that this seemed very minor and routine, I went to this appointment alone.  I arrived at the lab to have the lump aspirated, and was informed that they have already decided to perform a core needle biopsy instead, due to the suspicious nature of the lump.  Now, let me tell you, my father has always suffered from a very high level of anxiety.  I am, in many ways, my father's daughter!  I have tried for years not to let anxiety control me, but right about now, I began to worry...

I wasn't given much time to worry, as they immediately put me on the table and started the biopsy only moments after telling me this lump was suspicious.  Already starting to worry about the term "suspicious,"  I tried to remain calm, lighthearted, and cheerful.  The biopsy wasn't too bad, but afterward, they couldn't stop the bleeding through the very small incision.  I was lying there awake, watching 3 people press HARD on my left breast for over 20 minutes.  The bleeding just wouldn't stop.  By the time I got home, my chest hurt like I'd been tackled by a NFL player.  I don't know about the rest of you, but this biopsy hurt more than all of the following procedures over the last year.  It took a good two weeks for the constant soreness and pain to stop.  I felt like a wimpy baby, so I tried not to talk about it much to my family and friends.  That didn't stop me from thinking about it constantly. 

I was told to wait 2 to 3 days for the results of the biopsy.  My anxiety got the best of me, and I called the lab early on until the results were available for me to personally pick up.  Normally, they ask you to wait and discuss the results with the doctor.  I read it - "Intraductile Papilloma."  Of course, I had no idea what that was, so I started researching it on the web.  By the time I walked into my doctor's office for the follow-up, I knew all there was to know about the lump in my breast.

She told me that it was pretty bad, and that she needed to remove the area affected.  This all happened rather quickly.  She had me in the hospital within about a week, and I had it removed.  The scar was very minimal, as she cut exactly on the outer rim of my areola.  When it healed within about 2 weeks, it was VERY hard to see the scar at all. 

I was so happy and relieved.  I thought, "This is the end of it.  I can relax and get on with my life now." :-)

WRONG...

Where do I begin...

Welcome!

I started this blog, because I am starting my journey with cancer and cancer prevention at the age of 44.  Young? No, but I when I thought of my high odds of getting breast cancer, I always thought I would be at least 70 years old when the time came to face it head on.


"Blogging" is new to me.  This is my first blog, and I have only read two other blogs in my entire life.  When I began my journey with breast cancer, I really struggled to find information as seen from the patient's point of view.  There is plenty of vague, general medical information published by medical professionals, but nothing dealing with what to expect each day during this VERY long process.  While nothing is certain, and all people experience this differently, I was sure there were general, even common, issues which women in my position experience.


This brings me to how I came to write this blog.  Late one night, I searched the Internet for yet more information on the reconstruction process, specifically the length of time it takes to finally be finished with the whole ordeal.  I came upon a terrific blog, told in a very open and honest way, from the woman's point of view!  Here it is if you are interested:  byebyehooters.blogspot.com


After reading her blog, I decided to write my own, as a remembrance of what I went through emotionally and physically, what I learned along the way, and how I morphed into the new person I would become on the other end of this experience.  I hope that this blog helps answer some questions other women might have, and helps them feel as though they are not alone, or downright crazy, for feeling and thinking the things they do.