Well it seems that getting re-radiated really does have a negative effect on skin.  I had surgery over a month and a half ago to replace the leaking tissue expander ( basically a breast implant that can be filled with saline to expand it) in my right breast.  The Plastic Surgeon stitched me up internally to minimize scarring.  Last week I started taking Tae Kwon Do classes again.  I hadn’t been to a class in a few months.  I took it easy in class and didn’t  go all out.  I also had been trying to stretch my chest  because my breast area seemed so tight.  A couple nights ago, while lying in bed, I reached for something inside a drawer in my night stand.  I thought I somehow popped a leak in my tissue expander  because I felt wetness on my chest.  I got up and went to the bathroom and realized blood and  fluid was dripping from my chest and there were bloodstains on my shirt and pajama pants.  I lifted my shirt to find that the surgical scar had opened.  I had about a 2 inch opening in my right breast and I could see the expander.  It was very bizarre.  I thought it would gross me out, but I was surprisingly unfazed by the whole thing.  I grabbed some gauze pads and covered up the opening and put some surgical tape on it.  I woke up Charles & we headed to the Emergency Room.

The ER doctor got in touch with my Plastic Surgeon.  The Plastic Surgeon arrived within a half hour (in nylon sweat pants and a sweatshirt).  He examined me and gave me two options.  He could take the tissue expander out and stitch me up or leave the tissue expander in, stitch me up, and keep an eye on me & if there is a problem, take the expander out later.  We decided to keep the expander in for now.  The Plastic Surgeon and nurse set up a little surgical station.  The doc sterilized/disinfected the area and then he removed some saline from the tissue expander.  He then  irrigated the wound, injected some type of numbing agent into the area & then started stitching me up.  This time the doc used internal and external stitches.  He put some steri-strips and gauze over the stitches & then taped me up.  I watched most of what he was doing.  I was sent home with antibiotics and tylenol with codeine.

My doc told me that the combination of radiation and chemo probably caused my scar to tear.  I also won’t be doing Tae Kwon Do for a while.  The doc recommended that I work out on a stationary bike, that way I won’t stress the chest area.  I guess that means push ups are out as well!

I went for a follow up today.  So far, the doc says everything looks good.  I’m to call him if I develop a fever or chills or if my skin gets hot/redder.  We are keeping our fingers cross that all goes well.

Chemotherapy kills cells that divide quickly.  One of the side effects to many chemotherapy drugs is hair loss.  My hair  was falling out in droves and was in danger of clogging the drains when my husband and I decided to buzz the remaining hair off of my head.  (At the beginning of month 4 of chemo, I still have eyelashes and eyebrows, though my eyebrows are thinning).  What to do with my bald head?  I don’t know how you bald guys do it because when we first buzzed my hair off, it was still winter, and my head was freezing. Around the house, I usually don’t wear anything on my head.  (Today my son Christian was staring at me and he said he couldn’t remember what I looked like with hair!).  But when I go out of the house, I usually like to have my head covered.  (Though I have gone bald and have been complimented about my lovely shaped head). My sister Evelyn (aka- the default sister) made me a bunch of  large bandannas and bandanna-like head coverings in a variety of colors (lots of pinks and purples-my favorite).  I also purchased a couple of brimmed hats.  I usually wear the bandannas.  Occasionally I wear hats.  Sometimes I wear the bandannas and hats together. But whether I wear a bandanna or a hat, I always try to accessorize with big or long earrings.

http://www.yelp.com/biz/the-coffee-house-edison  (If you watch the video on this page, you will see an example of the hat with long earrings look.  I couldn’t find a picture).

I also purchased three wigs.  My husband asked why I bothered because in 1995 when I had chemo and lost my hair, I bought a wig and wore it three times.  The first wig I got for this round of hair loss, I purchased from the American Cancer Society’s TLC website.  I thought I picked a wig that was similar to my original, pre-graying hair color (brown with red highlights).  I should have listened to what was recommended on the website and purchased a hair color swatch to match to my own hair.  (***Buy the swatch folks!!!)  The wig was also short haired and similar (I thought) to the way I had my hair cut before I started chemo.  Not so much!  When I put it on, I didn’t look like me.  I’d say I look like a suburban soccer mom, but I don’t want to insult all the soccer moms out there.  When my husband put the wig on, all I could think was “Vote For Pedro!”  The one redeeming quality is that the wig actually fits nice.  I don’t see myself ever wearing the wig in public though.

Soccer Mom

Vote For Pedro

I went to NYC to see my oncologist and prior to my doctor’s appointment, a friend, Sally brought me to a wig store on West 14th Street.  I bought two additional wigs there.  I am going to a wedding soon and don’t want to wear a bandanna or hat.  I wanted some hair.  I recommend trying on wigs before purchasing them!  I had a couple issues with this store.  They limit you to trying on only 3 wigs, though the saleswoman let me try on 4.  That sucks.  Why the limit?  I can see if I was a teenager and was fooling around and trying on a ton of wigs but I was obviously bald and was looking to make a purchase.   They also didn’t allow me to take photos with the wigs on.  It would have been nice to get Charles’ opinion before I made the purchase.  I liked  and purchased two.  One long haired wig and one short haired wig.  They seemed OK when I tried them on, but they are “one size fits all” wigs.  The problem with that is that I have a small noggin and I feel that the wigs bulk up at the top and back of my head.  I don’t know if that is actually the case, but that  is how the wigs feel to me.  I call the shorter wig “the Chicago Wig”  and the long hair wig “The 70’s disco chick”.  So far, I’ve only worn “the Chicago” in public….once..to chemo.  Wearing wigs definitely takes some getting used to.  I find them to be itchy and hot.  As for the wedding, I’ll probably be a “Disco Chick”.

I sometimes wonder why I had breast cancer.  Statistics tell us that 1 in 8 women will get breast cancer in their lifetime.  I am one of 5 daughters (still living),( and three sons) born to my mom & dad, so there was a chance that one of us girls would end up with breast cancer.

What is so different between me and my sisters?  We all grew up in the same household.  But, I am the only left-handed daughter and a quick Google of “breast cancer and left handedness” seems to show a correlation to increased risk of breast cancer in pre-menopausal women (based on a study in the Netherlands published in 2005), though a more detailed look seems to show no correlation between left handedness and breast cancer.  The study was fairly small.   My first diagnosis was at age 28. My second at 44.  I was pre-menopausal.

I work in a highly stressful profession.  For most of the first eight years I worked for the NYPD, I worked steady midnight or “late tours”  (1988-1992 and 1993-1995).  Studies seem to show that women who work late shifts for many years seem to have a small increased risk of breast cancer.  (Looks like I’m two for two)!  Two of my sisters are nurses (also very stressful) and have worked crazy shifts as well but I don’t believe they worked steady midnight shifts as long as I had.  I also worked “late tours” between 2004-2006, upon my promotion to Lieutenant.  Actually in any position within  the  Police Department, the tours can vary greatly.  You can work a day shift one day, an evening shift the next day, and a late tour next.

At different times, while working, I have been exposed to carcinogens (basically anything that can cause cancer) and have had a  number of X-Rays due to injuries I sustained while working.  I remember responding with my co-workers  to 20th Street & 3rd Avenue a couple days after a steam pipe explosion in 1989.  Asbestos and who knows what else, was dispersed into the air as a result of the explosion.  I remember seeing people, possibly from the Environmental Protection Agency, wearing personal protective equipment including suits and face masks, while my co-workers and I were wearing only our uniforms without so much as a dust mask.  I also remember remarking to a co-worker that “something is wrong with this picture”.  We were assigned to the location for a few nights to keep residents and on-lookers out of the area.  I was also (along with thousands of others) exposed to whatever crap was in the dust and debris from Ground Zero in the weeks following 9/11/2001.  Even on days not assigned to Ground Zero, the exposure was possible because co-workers would return from the Trade Center Site trekking the dust back to the precinct on their boots and clothing.  There were also other incidents that I responded to, including fire scenes, etc.  A lot of incidents in over a 26 year career.  As for the X-Rays, in February 1994, I slipped down wet stairs on a burglary job injuring my back, neck, and shoulders. I spent 8 days in St. Vincent’s Hospital (with an additional 4 days about a month or so later).  In the days, months, and years following, I had a number of X-Rays, MRI’s and other scans done.   Could the various exposures have anything to do with my diagnoses?  Well we already know carcinogens cause cancer and X-Rays can increase the risk of breast cancer in some women.

Here’s hoping and praying that none of my family members and friends, especially my mom, sisters, and my daughter will have to deal with a personal diagnosis of breast cancer.  I will be their 1 in 8.

I came back from chemo around 4:30.  Not feeling my best, feeling kinda “blah” actually.  Feeling queasy & I’ve been having back spasms, though I’m not sure if the spasms have anything to do with the chemo (nor does the doctor).  I just know that the taxotere seems to magnify any ache or pain that I already have, so my messed up back aches more during and right after chemo.

Here’s how a typical chemo appointment goes.  I arrive at the medical facility, check in, pay my insurance co-payment, then sit and wait.  I am called into an examining room where a nurse checks my temperature, blood pressure and my weight. Contrary to popular belief, most people gain weight on chemo-partly due to the steroids given beforehand, and partly due to the fact that chemo can tire you out, so workouts aren’t as strenuous or long as pre-chemo. Your temperature is checked because had I been running a fever, chemo would be a NO-GO.  No chemo if there is a possibility that I had some sort of infection.  Chemotherapy wrecks havoc with all fast growing cells, including blood cells (& white cells, platelets, etc, stave off infections & If your counts are low, the docs don’t want them going any lower).  Then I wait.  The doctor comes in the room and checks my lungs with his stethoscope to make sure everything is clear & then checks my abdomen to make sure there aren’t any masses.  He also asks how I am feeling.  If everything is good, it’s time to go around back to the chemotherapy area.

The chemo area is basically a big room with individual cubicles.  There are curtains that can be opened and closed around each.  Across from the cubicles is the nurse’s station. In each cubicle, there is a reclining chair and the IV (intravenous) machine.  I pick the cubicle I want to sit in, take a seat, and wait for a nurse.

A nurse comes in, closes the curtain, and accesses my Medi-port.  A Medi-port is a completely implanted device that consists of the following: Reservoir – a hollow titanium disk that has a rubber septum. The reservoir is implanted in a pocket just below the skin on the chest wall. In my case, the upper left hand side, right below my collar bone.  Catheter – a tube that is connected to the reservoir and placed into one of the large veins of the chest.  In my case, into the heart.  The nurse feels for the reservoir and accesses it with a large needle.  Now ports are supposed to be good for two way flow (drawing blood and administering medication), however, my port is finicky.  Occasionally, the nurses are able to draw blood, using a number of techniques such as having me lie flat, turn my head to the right, and cough.  The nurses have also tried flushing the port with saline, heparin (a blood thinner), to no avail.  Basically my port is a bitch and only allows nurses to draw blood from it sometimes, which means the nurses have to draw blood from a vein in my left arm.  (My right arm can’t be used for blood draws, blood pressure readings, acupuncture, etc.  I had the lymph nodes removed under the right armpit.  Any injury to the right arm can cause lymphedema, which is a swelling of the arm).  It’s a real pain that my port doesn’t work like it is supposed to because instead of being stuck with a needle once, I have to be stuck twice, every week!

The nurse draws my blood and sends it down to the lab for a CBC (Complete blood count).  Before she leaves, she opens the curtain.  Occasionally they also check my blood chemistry.  (When I see my oncologist in the city, he also draws blood for additional tests, tumor marker test and tests to see if there are any tumor cells circulating in my blood..there aren’t).  Then I wait about 15 minutes for my CBC to come back.  If my counts are too low, NO CHEMO, for reasons previously noted, especially inability to fight infections).  My counts were good!

The nurse then attaches the first IV bag through the IV machine, and attaches the tubing to the tubing at the end of the needle that was previously pushed into my port.  This bag contains the steroid and anti-nausea medication (Kytril).  This runs for about 15 minutes. When this bag is complete, the nurse comes back with the heavy stuff.  Actually two nurses come back.  I am asked my name and date of birth and then the nurses both check to make sure the poison is the correct poison.  Docetaxel aka taxotere.

The nurse removes the first bag and attaches the second.  The taxotere runs for at least an hour, meaning it takes an hour for the whole bag to enter my body.  Today, it ran longer because I kept getting back spasms so the doctor and nurses decided to run the bag slower, just in case.

During the couple hours I am there, I talk with my husband, or mom if she accompanies me, read books on my Kindle or IPad, or play games on my IPad or IPhone.  The facility does not have WI-FI.  There is a small TV but I usually don’t watch it.  As there is a TV in each cubicle, a lot of people do and the competing TV shows get annoying and makes it hard to concentrate on what you are watching.  There is also a small bookshelf with books you can borrow.  Sometimes I try to sleep, usually without luck.  The steroids keep me awake all day and into most of the night of chemo.

I also eat snacks to keep the nausea at bay.  The medical facility doesn’t have a cafeteria but they keep a bunch of snacks (graham crackers, granola bars, pretzels Oreos, cookies, etc), coffee, tea, hot chocolate, soda (especially ginger ale), and juice for the chemo patients.  Some of the chemo patients are there all day getting chemo.  As I am only getting one drug this third chemo go-around, I am not there as long. The first time I got chemotherapy (1995-1996), my doctor hospitalized me for 3 days so he could run the drug, Adriamycin, very slowly.  As I mentioned in my first post, Adriamycin or Doxorubicin is extremely toxic to the heart and I was only 28.  My doctor wanted to run it slowly to mitigate this side effect.  BTW- my heart is fine.  Now my breasts are another story.  Damn things are trying to take me out.

When the bag of taxotere is complete, the nurse comes over, disconnects the bag from the tubing leading to the needle, and then pulls the needle out of my port.  She bandages my boo-boo and then I am free to go.  Chemotherapy is done for this week.

Then the side effects start.  My side effects have been as follows:  Neuropathy (pain, numbness, and tingling) down my right leg, from my knee to my foot.  Very annoying & It makes it difficult to sleep at night.  Tingling in my face (cheeks) on the day of and day after chemo.  Tearing in my right eye.  (No I am not upset, it is a side effect of my chemo!).  This is also an annoyance, especially while trying to read, drive, write a blog…..Nausea is a biggy though I have prescriptions for Zofran and Compazine to help keep the nausea at bay.  Exhaustion.  And ….CHEMO BRAIN! Chemo Brain has to be one of the worst side effects.  I also call this side effect “CRS” or “Can’t Remember Sh*t”.  I can be in the middle of a sentence or conversation and not remember what I was talking about.  I can’t remember names.  I couldn’t remember the name of my cousin’s wife the other day.  It was embarrassing.  I think my children get a kick out of it.  I used to be a smart woman.  I don’t feel smart anymore.  I walk into a room to get something and forget why I went into the room.  Sometimes when I am driving, I forget where I am going.  I know how to get there, I just forget what I went out for.  Frustrating!!!!

I could probably write a whole blog only about chemo brain, but for now, I won’t.  I still have to get up to date with my crazy a** journey.  I haven’t even gotten into the whole re-radiation story and my job story.  But who knows, I’ll be up all night tonight so maybe I’ll catch up.  If not, Happy Easter & Blessed Passover. MCP

So I decided to start a blog to chronicle this wonderful, messed up journey I’ve been on because Facebook isn’t the place for everything & I’ve been wasting too much time playing games on my computer.  My life has been crazy for quite some time but this past year and change has been crazier by far.

The week before Christmas 2011, I was diagnosed with breast cancer for the SECOND time.  I was 44.  I was first diagnosed in August of 1995, at age 28, one month after giving birth to my second child (another boy).  I had my third child, a daughter, in 1998. BTW- I have no family history of breast cancer, I rarely drink, don’t smoke, and don’t have the breast cancer gene.

2011 was a pretty good year up until then.  I had been working like crazy. I had been a Captain with the NYPD for two years & really enjoyed my position (though it was very stressful).  OWS was in full force around NYC.  My eldest son was a freshman in college, my middle guy was a HS junior, and my daughter was in 8th grade.  My husband and I had been married over 21 years.

Because work was so crazy, I finally got around to getting my yearly Breast MRI in November.  My surgeon had been bugging me since August to get it done.  I had a mammogram and sonogram in February of 2011 & both were negative. Well a 1.1 cm mass was discovered in my right breast, on the MRI.  I scheduled  a needle biopsy since my radiologist didn’t seem too concerned.  (I had a needle biopsy of my left breast in June of 2011, and it was determined that I had  benign cysts).

As I already noted, I found out the week before Christmas that I had breast cancer…..again (TRIPLE NEGATIVE).  I tried to enjoy the holidays but it was difficult knowing that I was going to go through more surgery and that I may need chemotherapy..again.  My sisters, mother, cousin, and goddaughter took me out for Karaoke to try to take my mind off of the impending surgery (I love to sing).

On January 6, 2012 I had a skin sparing double mastectomy, with reconstruction.  I wouldn’t recommend it (the skin sparing part).  If you ever have a breast cancer diagnosis, get it all removed.  You’ll understand why I say this shortly.  I didn’t listen to the little voice in my head that said,  “Get rid of everything.  You don’t want to do this again!”  Instead, I listened to a doctor.  FYI- the injections for the sentinel node test hurt like crazy.

In February of 2012, I started my first of eight cycles of CMF.  My oncologist was thinking of using a regimen that included a taxane but one of the side effects is neuropathy & I already had issues resulting from work related herniated discs in my neck and back.  As my blood levels didn’t return to normal by three weeks after the first couple cycles, I started going for chemo once per month.  (In 1995-96, I had 6 cycles of FAC.  Adriamycin is very toxic to the heart, so my oncologist didn’t want to give me it again).

In July of 2012, right after my 7th cycle of chemo, I found two small lumps in my right breast in the area where my needle biopsy had been done.  I freaked out.  I called my surgeon and plastic surgeon to get an appointment.  My plastic surgeon was able to see me that day.  He gave me a prescription for a mammogram and sonogram and got me an appointment for both that same day.  I went to the woman’s imaging center and had the mammogram and sonogram.  The radiologist told me that the lumps were just lymph nodes and that I had nothing to worry about.  A couple days later, the family went on vacation.  We were away for a few weeks.  The day after we came home, I had an appointment for my 8th cycle of chemotherapy.  I had developed a cough while on vacation so my doctor wanted to wait a week before administering my final chemo.  As an afterthought, I told him about the lumps and mentioned what the radiologist said.  My oncologist recommended that I see my surgeon.

I had my 8th cycle of chemo the following week and my appointment with the surgeon the following day.  My surgeon was reading the radiologist’s report and stated that the radiologist noted that I had one lymph node.  I had felt two distinct lumps and told the surgeon so.  I had also seen two lumps on the sonogram so I didn’t understand why the report only mentioned one.  The surgeon felt the area & stated that we could keep an eye on the lumps or remove them.  I opted for removal, which was done the following day in the surgeon’s office. (The quicker the better because by the following week, my blood count would be low from the chem0).  The lumps looked like two little pearls.  The surgeon didn’t think they looked bad.

A week later, on August 22nd, I went back to the surgeon for a follow-up.  I thought everything was OK because I hadn’t heard anything from him.  (After the needle biopsy in November, he called me as soon as he got the results of the biopsy).  It wasn’t OK.  I found out that both lumps were cancer.  To say I was fu**ing pissed would be an understatement.  The lumps could have been removed a full month before had I known they were bad!  The cancer was identical to the December pathology, except that I was actually slightly estrogen positive (Further testing revealed that I was still Triple Negative. Crap!).  My surgeon & oncologist and other doctors that I have seen feel this THIRD cancer was cells that were left in the needle track during the needle biopsy in December.  Damn it! Had I had a regular mastectomy, of the non skin sparing variety, this area would have been removed and I probably wouldn’t be dealing with this crap again.  Or I would have had radiation.  But doctors don’t like to re-radiate an area & I had radiation 17 years prior.  

I thought I was going to go back to work shortly.  Instead, I was going to have more surgery, radiation (I thought doctors didn’t like to re-radiate!!), and additional chemotherapy! Ugh………………..to be continued…..