Cancer Is A Wake-Up Call You Cannot Hang Up On

Cancer is one of those things that comes into your life and then completely turns it upside down. One day you're plugging along, and the next day you suddenly find yourself immersed in a new world – the world of cancer.

My life became all about appointments, needle sticks, lab reports to anxiously wait for, tough decisions and learning as much about breast cancer as I could. Then once the tough decisions were made my life became about chemo, Penguin cold caps (to try and save my hair), Herceptin, hormone therapy, more tests and laying on the couch a lot feeling miserable and depressed.  Two weeks ago I had a mastectomy to remove my left breast (the culprit in all of this) and have started the reconstruction process.

I'm far from "out of the woods" and just feel kind of stunned and confused. What the hell just happened to me?

I feel like I will never be able to go back to my Old World - my world before breast cancer. I'm not the same person anymore.  While on the one hand it's exciting to stand on the edge of a New World, it's also scary. Old World was familiar, but this New World stands before me undefined. It's like a wide open field with no clear path, and to be honest I feel lost and alone.

The hardest part is that people who haven't been through it just don't get it. Not that I blame them, of course. I can't expect them to know what they don't know.

Besides the obvious scars I will always have now cancer has left a permanent imprint on my life and it will never be the same.

Elizabeth Edwards Dies

I was saddened to read today that Elizabeth Edwards had passed away after a 6 year battle with breast cancer. 

RIP Elizabeth Edwards
1949 -2010

How I managed to save (most) of my hair during chemo

When I was told I would be having chemo before surgery (and 6 rounds of chemo at that) my first thought wasn’t about how sick the chemo was going to make me.  Nor was my first thought about how chemo would be my best chance at eradicating the breast cancer they had found in my liver.  My first thought was that I didn’t want to lose my hair.  Believe it or not there are women who REFUSE chemotherapy treatment because the thought of losing their hair is just too much.  I didn’t fall into that category, but I was heartbroken at the thought of going bald. 

My oncologist told me that the specific combination of chemo I would be receiving made me eligible to try the “Penguin Cold Caps” if I was interested in trying to save my hair, although there would be no guarantee as to the type of results I would have since the administration of the caps falls squarely onto the shoulders of the patient and whomever they have helping them.  Was I interested?  Hell yes!  Did I know what I was getting myself into?  Hell no.

Penguin Cold Caps have been in widespread use in the UK for years, but haven’t really caught on in the U.S. yet, although a recent piece on “Good Morning America” may put them on the map sooner rather than later.  Because Beaumont is an awesome hospital they were already hip to the cold caps.

Basically the “science” behind the theory that wearing these frozen caps during chemotherapy reduces hair loss is based on the notion that the cold will constrict the hair follicles making them less susceptible to the chemo.  The freezing also puts the hair follicles to “sleep” so the chemo doesn’t recognize them as actively dividing cells and won’t go after them.

I envisioned one frozen cap that would stay plugged in to keep it cold and that you would wear this on your head while you were having chemotherapy.  In a more perfect world, that’s what it would be.  Instead they put you in a private room with a freezer.  Inside the freezer are multiple caps.  You have to start putting the caps on at least an hour before chemo starts to make sure your head is nice and frozen before any chemotherapy drugs are administered.  Then you have to swap them out every 30 minutes for a new frozen one to ensure you maintain a nice frosty temperature on your head.  Not only does this go on during the chemotherapy session itself, but it has to continue for 3 HOURS after the last of the chemo is done as your body continues to process the drugs for at least that long afterwards.  So, instead of going in for a couple hours to get your chemo regimen, this is now an all day 8 hour ordeal.  Insurance doesn’t cover the cost of cold caps either and they’re not cheap to use.  Pricing may vary, but I had to pay $150.00 to “rent” the caps every time I had chemo (6 rounds).  You also have to really baby your hair the whole time you're going through chemo to further try and reduce any hair loss.  This includes cutting down on the number of times per week you wash your hair, using only baby shampoo when you do wash your hair, not using a blow dryer or any other heat related products to style your hair, etc. and not being able to get your hair colored or treated in any way whatsoever for up to 3 months after chemotherapy ends.  So, yes you can try and save your hair, but it will look like hell in the process.

Oh, and you can't put these caps on and take them off by yourself so you need at least one other person there with you all day, each time to help you.  Chemotherapy was not only about getting the drugs, but it became a balancing act of timers, thermostats and always trying to figure out an “easier” way of doing this.  The obvious question people would ask was “Is it cold?”  Fuck yes, it was cold!  Did I mention that these things are frozen?  Did I mention they’re on your head all day?  Administering these caps during chemo was a nightmare, but I have to admit I had decent results.  Don’t get me wrong I still shed a lot of hair, but I had a lot to lose as it was super thick to start with.  Would I recommend the cold caps?  Yes, but be aware of what you’re getting yourself into and make sure you have 1-2 people who are willing to come with you to every chemo appointment to help you.  If the caps aren’t administered correctly – even one time – you risk losing all your hair so make sure these are people you trust to do it right.  If you're interested in learning more about the Penguin Cold Caps you can find more information here:

http://www.msc-worldwide.com/indexusa.html

It's Stage 2, I Mean, Oops, We're Sorry, It's Actually Stage 4

After a diagnosis of breast cancer your life becomes a dizzying blur of doctors appointments, tests and long periods on hold with your insurance company, who at this point wishes they never heard of you.  One of the reasons for all of these tests (MRIs, CAT Scans, Bone Scans, Chest X-Ray, Bloodwork, etc.) is to determine what stage your cancer is.  Staging is very important as it not only determines your course of treatment, but it also gives you a solid benchmark to see whether or not the cancer has spread and if so, by how much and where.


Before all of my test results had come back both my oncologist and breast surgeon had told me I was Stage 2 and that my cancer could be curable with aggressive treatment.  Although, "aggressive treatment" sounded daunting, "curable" was what I wanted to hear.   


Insert the sound of a bubble bursting here. 


After the results of my CAT scan came back I got a call from my oncologist telling me they had found "3 dark shadows" on my liver and he wanted me to have a liver biopsy to make sure these spots weren't cancer as well.  "Are they ever not cancer?" I asked.  "No, when you already have breast cancer they are usually indicitive that the cancer has spread there." was the response I got.  The liver biopsy was no picnic and of course I had held out hope that maybe those dark shadows on my liver were something else (too much drinking in the 90's?), but several agonizing days later I got the call from my oncologist telling me the results of the biopsy had come in and that they had found breast cancer in my liver.  He was quick to point out that it wasn't "liver cancer", but that the breast cancer had metasticized and had spread to my liver. 


So, why the fuck did they tell me initially I was Stage 2 when the reality was they didn't know what stage I was at that point because not all the results of my tests had come in yet?  Of course I asked about this (I did not use the word "fuck" although I wanted to) and I got a very dissatisfying response.  Apparently they feel the need to tell you something right away.  How about wait a couple days and tell me something accurate??  WTF?


Goodbye Stage 2, Hello Stage 4.  There is no Stage 5...

“It’s cancer, Judyth”

Waiting for test results is usually agonizing enough as it is.  Waiting to find out if you have cancer is more stressful than anyone should have to endure.  Especially if you’re already a stressball like me.  I didn’t get out of that marathon Mammogram, Ultrasound, Biopsy “trilogy of fun” until about 5:30 p.m. on a Tuesday.  I didn’t get a call until around 10:00 a.m. the following Monday. ..yes, 6 days later  (thanks to Good Friday).  Those 6 days were among the most agonizing I can recall.  Everyone was telling me “try not to think about it”.  Okay, you try not to think about it if you were waiting to hear whether or not you have cancer.  It’s nearly impossible to think about anything else!  When the call finally came it was from the associate from my OB/GYN’s office who had examined me the week before.  Because she had written the order for the mammogram all the test results came back to her so she was the one who had to call me.  I will always appreciate the fact that she didn’t fuck around.  She came right to the point.  “It’s cancer, Judyth”.  In that instant my whole world fell away.  I had been standing out in front of my office building to be able to talk freely and now I desperately needed to sit down.  I tried to listen as she read some stuff off the pathologists report, but all I could hear was the sound of my heart pounding in my ears.  I mean anything after “It’s cancer, Judyth” didn’t really matter anyway…

The last thing she said to me was that she had never had to tell anyone they had cancer before and how sorry she was.  Well no one had ever had to tell me I had cancer so I guess it was a day of firsts for both of us.   

The Mammogram Appointment that Ended With a Biopsy

I went for a mammogram on a Tuesday.  My appointment was around noon so I figured I could run and go get this taken care of on my lunch break.  The mammogram itself was a little more detailed than normal since this wasn’t my routine, yearly test and they had me wait back out in the waiting room while they had a radiologist look at the results.  I knew something was wrong when they asked me if I could stay for an ultrasound.  So much for getting this done at lunch!  The ultrasound tech had a hard time locating the spot they had apparently found on the mammogram.  I was told I had dense breast tissue which makes locating abnormalities a little more difficult.  Great.  Normally an ultrasound shouldn’t hurt but she was pressing down so hard and going back and forth over the same area again and again and again.  And this was all after my left breast had been flattened and pulled every which way for the mammogram.  Finally she called in the radiologist to come in and do the ultrasound and it seemed like he had better luck.  He was at least able to match up the spot on the ultrasound with the spot on the mammogram.  This “spot” would now become known as an “area of concern” that they wanted to biopsy!  Biopsy?!  This was quickly becoming a nightmare of an afternoon!  (I learned later that at this point the radiologist already knew it wasn’t a cyst because they could see on the ultrasound that the spot wasn’t filled with fluid, that it was a solid mass.)  I didn’t have to move to a different room for the biopsy since it was ultrasound guided and I was already in the ultrasound room.  As I laid there watching the nurse prep the room for the procedure I couldn’t help but notice she brought in 6 very large hollow needles.  I mean, really medieval looking shit.  “Those can’t all be for me”, I thought.  Maybe she’s just stocking up the room.  I was already crying as they explained the procedure to me and to my horror I learned that yes, all of those needles were for me.  All six of them.  Actually 7 needles were involved if you count the one they had to use to give me a local anesthetic injected into my breast to numb it.  Unfortunately I would quickly learn that needles were going to become a constant in my life.  I could tell by the look on the radiologist’s face as he was swapping one needle out for the next that what he was seeing in the way of the tissue samples he was getting wasn’t good.  Of course he told me that he couldn’t tell me anything and that we had to send the samples to the pathology dept. and wait for them to write their report.  This would take several days and if Friday hadn’t been Good Friday I may have gotten the results then, but as it turned out I had to wait until Monday, the day after Easter.

Mirror Mirror on the Wall

A lot of people have asked me “how did you first find out you had breast cancer?”  Believe it or not this trip down the rabbit hole started one day in the mirror while I was shaving under my left arm.  Glamorous, right?  I don’t know if it was the angle I was standing at or the way the light in the bathroom was at that moment, but I noticed a dimpling in the skin on my left breast while my arm was raised up over my head while shaving.  “What the hell is that?” I wondered.  Had that always been there?  I didn’t think so.  I definitely think I would have noticed that before.  When I was done shaving I laid down on my bed and started feeling around my left breast in the area I had seen the dimple.  I didn’t know exactly what I was looking for and because I was looking for something, now everything felt like a lump. It seemed like I could feel something, but I didn’t trust in my own judgment at this point. 

The next morning I walked into my OB/GYNs office without an appointment and asked to have my doctor give me a breast exam because I thought I had found a lump, but I wanted to be sure.  As luck would have it my regular doctor was out delivering a baby so I saw his associate.  Because I didn’t have an appointment they had to “work me in”.  “Working you in” means that you’ll wait at least an hour in the examining room before anybody comes in to see you.  I didn’t care, I would have waited all day long.  I just wanted a professional to check this out and lay my worries to rest.  When the doctor finally came in and examined me she said she could feel something too, but that it was probably a cyst.  I mean I’m relatively young to have breast cancer, my last mammogram was fine and I have no family history of the disease, so what are the odds?  Yes…probably a cyst.  What a relief!   She wrote me an order to go have a mammogram a couple days later just to be sure.  On my way out she assured me again that she didn’t think I had anything to worry about.