Axillary web syndrome

When someone you know has breast cancer the first thing that pops into your head when you hear that they will be undergoing a mastectomy and chemotherapy (other than 'oh shit') is boob loss and hair loss.

Right?

I know this, because that is what popped into my head when I found out I had breast cancer.

Never ever did the words 'axillary web syndrome' come to my mind.

Let me tell you about this little known 'side effect' of mastectomy. Even though it's not well known, it is well documented and once you start researching it, you'll see lots of info on it.

And lots of pictures.

It looks something like this:

and this

Unfortunately after undergoing a double mastectomy, I now am lucky enough to experience axillary web syndrome first hand. Woohoo.

"Cording" - as it is referred to instead of the 'axillary web syndrome' official name is when the lymphatic system is disrupted, by the surgery. A (tennis ball size, remember) chunk is taken out of your armpit for the lymphnodes to be biopsied. When the lymph drainage 'veins' (for a lack of a better word) are cut they sometimes experience trauma and start getting rope like and start showing up through the skin. The arm feels tight and cannot be stretched any more without pain. Even holding a pen is painful (you can see why I haven't typed for a while, this is hurting me)

Today I went and saw a specialist in lymphatic drainage. She explained to me that lymph vessels are now cut, and they are trying to find a way back to each other. The ones that do make it, will feel tight and will need to manually be stretched (by her) in order for me to be able to move my arm properly again, and for the tightness and pain to go away. The ones that don't find a way back to each other, will eventually become brittle and when stretched and manually stimulated will 'snap' and break. Then, they will be reabsorbed by your body as lymphatic fluid.

How wild is this? I never knew this before.

So, on to my appointment today.

She has to manually stimulate the 'cords'. Ouch! If it sounds painful, it's because it is.

I have about 5 coming out from my armpit, all the way to my thumb.

(I know, I know, could I BE more disgusting right now?!)

Anyway - she grabs the first one and starts stretching the bejeeses out of it. It feels painful but I want it to get better so I bite my tongue. I am there for 40 minutes. After about 20 minutes of stretching one cord snapped. I have never ever felt anything like it before. No pain, but a weird 'snapping' sensation inside my body. It was accompanied by a 'snap' sound. Eery.

I looked up in shock and she laughed. Victory. She asked me to reach up, and immediately my range of motion had improved. WOW.

She worked on them a bit more, but I was in too much pain by the end of it and she let me rest. I am to go back tomorrow and we'll do it all again.

Doing this for the next few months will help me stretch these damn cords out and snap the ones that are brittle so I can stretch out my arm again.

'Cause I didn't have enough to worry about.

New Toys!!

Look what I got today:

Side effects and choices

I don't have "too many" options. I am lucky enough to have choices.

I am very aware and very thankful of that.

But, alas, it is not easy.

It all comes down to the nitty gritty numbers and statistics. It comes down to percentages and averages and trying to decide between quality of life versus quantity of life in some cases. It comes down to that old saying "Do you feel lucky?"

Today we went to the cancer center.

We spent about 3 hours there including my blood work.

(As a side note, I have a feeling that 'blood work' will soon become secondary to me.

2011 was supposed to be the year of the rabbit. I think they messed that one up. Methinks it's the year of needles.)

It is a new centre and really beautiful. Inside looked like an airport lounge. With knitting needles. Every table had a little basket on it, and inside were knitting needles and half started projects. From what I gather, the crowd in this place is somewhat older than me. I felt like the curious toddler in a room full of adults.

I met my man nurse and he took my vitals.

I have pretty boring vitals, my blood pressure is always 90 over 60. My weight is always 120 lbs. I am always 5'3" and a quarter. (And yes, any shortie will tell you that it is always important to put that quarter in there.) As long as I can remember these have been my vitals. So, smugly I handed in my sheet with these numbers already scribbled in. My man nurse chuckled when he read it. He starts with the blood pressure. Ding Ding! We have a winner. Then I get on the scale. To my delight I was even lighter than I predicted. That's right - who's chuckling now?

Next comes my height. He measures me with his super duper electronic measure stick.

It beeps and makes sounds.

Then it flashes the number: 5'2" - whaaat? That can't be.

I was 5'3" and a quarter just yesterday.

Man nurse leaves the room and as the door closes, I swear I hear him chuckle.

~~~~~

In comes doctor.

Nice man, somewhat of a sense of humor, very detailed and thorough in explanations. Just what I look for in an oncologist. I still can't get over the fact that I am using the word oncologist in a sentence - and it has 'my' in front of it. But I digress. He's a nice man.

We discuss the pathology report. He tells me what I already know. I pull out my questions and he tells me they are good ones. (thank you Dana!) He starts to read me like a book, and tells me 'my type' of patient usually likes to know the statistics on my stage of cancer. That means basically how many people live and die, who have the same cancer, same grade, same stage, same age as me.

It's a morbid idea, but it's better to know I figure.

Next he pulls out sheets of stats that he printed out with scenarios. I realize then and there that he is a man after my own heart. I print scenarios too. (Except mine have to do with kids talking back to me and what time out punishment they will receive.) But still, they are scenarios. I like to look at them.

Here is scenario number one:

I do nothing more than what I already have done:

According to the medical treatment calculator I have a 12.6% expected cancer death rate in the next 15 years if I do nothing else.

That means I have a 87.4% survival without further treatment. Not too shabby.

Scenario number two:

I skip chemotherapy through I.V. and go directly on Tamoxifen.

(Still chemo therapy and I will have to be on it for 5 years (!!) but in pill form not intravenous)

Much milder.

According to the medical treatment calculator I have a 8.6% expected cancer death rate in the next 15 years. That means a 91.4% survival - already so much better.

Scenario number three:

I choose to do traditional chemotherapy for 4 cycles AND go on Tamoxifen chemo for 5 years.

According to the medical treatment calculator I have a 4.8% expected cancer death rate in the next 15 years. That means a 95.2% survival - getting better by the minute, isn't it?

This was supposed to be all the choices. To me it seems obvious that I will do the traditional mainstream chemo PLUS the 5 year Tamoxifen chemo (pill form). But then I wonder if I could push further. I ask if there is anything else that could get my percentages of survival even higher. I know I know, I should be grateful for all I was shown already. I am. I just wonder.

After ummm-ing and errrr-ing he tells me he will be right back. He's going to check his handy dandy treatment calculator for one more thing. He is unsure if my medical will cover this suggestion, because traditionally is considered 'too aggressive' for my stage of cancer. But he said, if I want to, we can try calling them - the powers that be.

He comes back with my fourth and final scenario:

I choose a more aggressive traditional chemo than the original one suggested, for 6 cycles instead of 4 PLUS Tamoxifen for 5 years.

According to the medical treatment calculator I have a 3.9% expected cancer death rate in the next 15 years. That means a 96.1% survival. This is as good as it gets.

It may seem simple but it's not. This last choice has me agonizing over a 0.9% survival difference. It would be a much much harsher chemotherapy and the side effects would be much more substantial INCLUDING heart muscle damage.

The other chemo did not have that side effect (plenty of others though)

I am willing to bet a lot of people would roll their eyes at 0.9% survival rate. But this is MY survival rate so I won't. I know it's only a small difference. Not even 1 percent. What are the odds? But you know what the odds were of a woman my age with my history to have my type of breast cancer? 0.03% - talk about small percentages.

All of a sudden 0.9% is not that trivial.

I will think of it some more over the next few days - even though I think I have an idea of what I probably will choose. I have to weigh all the benefits and all the risks and decide what is worth more to me. Feel free (in fact, I would love to hear it) to weigh in with your comments. Give me your thoughts and ideas. Bouncing ideas back and forth not only helps me compartmentalize the situation but also is a good way to be made aware of things I may not have thought of.

Otherwise I'll be forced to go back on Friday and bring a coin.

Oh and as we were exiting the cancer centre a very nice, very friendly, very old lady volunteer asked if we would like to see their free wigs and hats that were available to me. We followed her and found a room full of about 20 wigs (all grey by the way except for one that was salt and pepper) and a bunch of knitted hats. The friendly lady talked about how easy it was to knit and crochet these beautiful hats and scarves and I told her how uninterested in knitting I was.

"The youth these days" - her eyes seemed to say.

At the end of it all she asked which wig I wanted.

I was extra polite when I told her that none spoke to me.

Instead I chose two knitted hats.

She gave me a bunch of literature to take home and as I walked out of the centre I realized she snuck in a 'how to knit a hat' brochure in with the papers.

I guess she was sneakier than I thought.

More surgery, more options

I've got this weekend to relax, and monday I see my surgeon. Then the fun begins.

We need to go over the pathology report (which at this point is redundant) and she'll check my scars and see how I'm healing. One thing she'll be looking for is to see if I have any accumulation of fluid in my chest or armpit, now that the drains have been taken out.

I've spoken to 2 girls who have had mastectomies and they both ended up back in the surgeon's office a week later with fluid build up. Then she takes a syringe (and it is a massive one, like what they would use for horses) and sticks it in my side where the drains were, and slowly starts removing any liquid build up. The syringe has to be bigger, in order to accommodate the amount of liquid that may come out.

Sounds like fun?

The good news is that even though it sounds scary, I won't actually be able to feel any of it, according to the girls who had it done. I am still numb on my chest area. It's a weird feeling to touch your skin and not feel like you.

So, here's hoping I don't have to get anything drained on monday. It's just not a fun way to start the week. One thing I will have to do though is to talk about the

next surgery ... when they insert my port-a-cath.

Because I have to go for chemotherapy soon, and because chemotherapy is poison that damages your veins, they almost never recommend having chemo via I.V. needle. They recommend that the patient gets a port a cath put in surgically, just under the collarbone. It is a metal round device, about the size of a quarter that gets inserted under the skin. I understand it gets placed right in your main vein by the heart. The idea behind it is that when you get chemo, they will just prick the skin by your collarbone, above the port and the syringe with the chemotherapy will enter your main vein right away, every time, "making chemotherapy a snap."

Hmmm.... a snap for WHOM exactly? It doesn't sound like a snap to me. It sounds like really gross yucky metal things will be inserted into my body and I will be able to feel them not only on the inside pumping into my main artery, but also I will see it from the outside, it will be a big bump under my skin. (They will remove it when I'm done chemo and I will be left with yet another scar on my body)

This is what it looks like, this will be just under my skin -

it gives me the heebee jeebees.

There are so many things I dislike about this next step, but the biggest one is that I am supposed to be awake during this procedure. AWAKE. Oh, lightly sedated of course, but still awake. I plan on telling the surgeon that there is no way that I want to be awake for that. I don't want to hear them talk about what they're doing and I don't want to feel 'pressure' on my chest and I don't want to be on an operating table awake!!

I feel like throwing myself on the floor and stomping my legs and wailing my arms. A full blown tamper tantrum is brewing, I can just feel it.

I DON'T WANT THIS.

Any of it.

The other day somebody mentioned yet again how 'strong' I am and how 'brave'.

I don't think those words accurately describe me. I am not strong or brave.

I am scared.

Shitless, if you really want to know.

So, that brings us to Tuesday. At 8:45 am I am meeting the oncologist for the first time.

To celebrate the occasion I ordered myself a special white hoodie from the cancer awareness website.

It says 'my oncologist can beat up your oncologist'.

I plan on wearing that to the meeting. - I hope he has a sense of humor.

We will go over the report with a fine tooth comb and then start talking treatment options. I understand that it will be a 2 hour appointment and that I will be presented with options. I am not sure I feel about this. I guess I am grateful to be so involved in the treatment decision, but I am getting kind of tired of all my options. Options sounds too nice of a word for all the choices I've had to make. Was it really an option to have surgery? An option to get my bilateral mastectomy? An option to choose chemo? Hardly. They are not options. They are terrible decisions that I had to make in a matter of days. Most days I think I did the right thing. In fact, I think only once or twice did I ever have a twinge of doubt about the options I chose.

On tuesday, I have to chose which chemo drugs I would want to put inside my chemotherapy infusion. That's right, he will present me with 3 or 4 drugs that all work, but all have different pros and cons. Then I need to take a day or so and think about it. At the following meeting, I will tell him which chemo cocktail I chose and we make a plan to start it.

Sounds very empowering doesn't it?

It is.

But it is also very scary.

Tonight is movie night at casa Knock Knock. We are planning to eat pizza and watch Toy Story 3. Tonight I have no decisions to make. Dinner was chosen by my friend from work who is kindly picking that up for us, and the movie was chosen by my kids.

Tonight I get to sit on the couch and snuggle with the people I love and indulge.

I think I'll go back to weighing my options after the weekend is over.

Get out your bubbly

Update: Spoke to an oncology nurse last night about the pathology report. It turns out I interpreted it correctly... not in lymph nodes yet. Woot Woot!!

We are in good spirits this evening.

Today started out pretty great. My best friend and her sister were coming over. The sister is a cosmetologist and is a fantastic person to have in your corner. She knew I was feeling 'blah' from the other day so she was coming over to do a makeover on me this morning.

This is the after picture, I have no before.

What better way to spend a day than have 2 girls you love fussing over your hair and doing your makeup for you? Then, just as we were done, the phone rings. It's the doctor's office.

They have the results. I need to sit.

"I'll be right over" I say. Nope, apparently that won't work because my doctor already left for the day today. Would I be willing to just wait until tomorrow?

Ummm... No.

I ask them if they can fax the results to the nearest care clinic and I will go in and have the doctor on call read the results to me. They agree to it, and I call Brad at work. He will meet me at the care clinic by our house in 15 minutes - even though he technically works 25 minutes away.

When I get to the care clinic, I go into the examining room alone but I am expecting Brad there any second so I start pacing around. I don't want him to miss this. I don't want to be alone when I get the results. A minute later I hear him rush in the front door, so I open the door of my little room and flag him down. He starts to run down towards me, then gives me a funny look.

I remember the make over. "Sarah did my make up earlier before I knew we were getting the results". He nods. We go in the room and have time to whisper a bit before the doctor enters. "I thought we were going somewhere after this, you look all done up" - we both nervously laugh.

When the doctor comes in finally, he is so utterly confused. He thinks I'm there for a cold or something because he doesn't mention the results. I lose my patience too quick, and start blabbering about breast cancer, double mastectomies, and pathology results.

'You want a mastectomy?' he is so puzzled. 'No, I've had one already, you have my results'. I point to the clipboard he is holding. 'I just want the results. What are the margins? Has it gone into the lymph nodes?" I keep grilling him.

At one point I think I pull the clipboard out of his hand and look at it. Now I realize he is reading it over my shoulder. This is not how this is supposed to go.

I ask if I can just get the papers photocopied and he agrees and quickly heads out the door. I think he just wanted to get away from me.

The medical assistant gives me my photocopies and I go outside the care clinic and promptly sit down on the curb to read it. I have read so much on staging and margins and lymphatic invasion that I should be able to decipher the gist of it.

I read it out loud, with Brad and Christine listening in. It's actually quite simple to understand, the report is broken down in a lot of detail. I am going to see my surgeon on monday again, when she returns from holiday, and I will go over it with her again, just to make sure I am in fact interpreting it correctly.

But for now, this is what I know:

My right breast measured 26 x 1 x 4 cm in thickness. Hmmm... I never knew that. That is interesting, but useless information to me. I also know that the cancer was quite unfriendly and aggressive, grade III and that it also had a small formation of a new cancer growing beside it. That's right folks, not one but TWO cancer clusters. Bad boob!

The chunk that was taken out of my armpit measured 5 x 4 x2 cm - that's the size of a tennis ball. No wonder my arm is sore. Now I don't feel like a cry baby anymore.

The margins were pretty good. 9 cm on one side showed clear margins, 8 cm on the other side, 4 cm on the other and 1.5 cm on the front side (it was 0.5 cm deep to the skin, which is why I felt it so easily) How lucky is that? If it had been towards the back of the tissue, I never would have felt it.

Let's talk lymph nodes. Sorry if this sounds complicated, I'll try to explain it the best I can. Well, the radioactive needle that they injected in me prior to the surgery helped them find the sentinel lymph nodes (those are one or two nodes, closest to the breast, into which the cancer cells would first drain to if they were to start 'invading' other tissues. Then, in the armpit, there are the 'regular' lymph nodes called axillary lymph nodes) Out of the two sentinel nodes, one showed cancer cells in it, the other one next to it didn't. They took 8 lymph nodes in my armpit out, and they were all cancer free! So the way I understand it, is that the cancer was trying to spread, but didn't quite make it.

I am cautiously optimistic. I will confirm this report with my surgeon on monday and then hopefully get an appointment with an oncologist in the next couple of weeks. He will then let me know when chemotherapy begins.

For now I am going to rest, and try to absorb the news.

I do have a small eentsy weentsy problem with one line in the report though. As they removed my breast and started dissecting it, they felt the need to write this sentence down as the description of my nipple: "There is a nipple immediately lateral to the midline of the skin".

Now maybe I'm being petty, but my version of translation of that is: 'the nipple wasn't quite in the middle of the boob, but just beside it'.

Pfft... Mr. Pathology guy - you try breast feeding 2 children for three years and see where your nipple is.

Talk about kicking a horse when it's down.

What not to do

When you hear someone has breast cancer, and you want to share a story of someone you know who has gone through it, please THINK before you speak.

If that person who you are thinking of has passed away from breast cancer, do not share it with me. I don't want to hear that.

Every cancer patient knows that we don't all make it.

Something as small and seemingly innocent as that comment, has the power to put a negative spin on my day, and I have to work extra hard to get out of this mindset.

I know that nobody intentionally goes out to do this, but sometimes, our best intentions fail and we inadvertently hurt someone we care about.

Luckiest girl in the world

Okay, let me take you back to 1992. That is the year Brad and I first met. We were in grade 10 (me) and grade 11 (him). He was dating my friend Beth at the time. The three of us were inseparable. We hung out before, during and after school. Whenever we could.

I was always at her house, and so was Brad. We went to parties and concerts together. Back then, we didn't spend too much time thinking of each other, but we enjoyed hanging out as a group.

We were the three musketeers for a while.

We did everything together.

A year and a half later, Brad and Beth broke up and I took off to Europe for a year of schooling. By the time I returned a year later, the two of them had graduated high school and the three of us lost touch all together. I don't think I have ever seen or talked to Beth again.

Maybe once in 18 years.

Fast forward to 18 years later (last year) when Brad and I meet again through school. This time it's our children's school. Both our daughters are in the same class in elementary school. Kind of ironic actually. It was easy to catch up like old friends, because in fact, that is what we were.

Brad and I transitioned easily from there because we had a common ground, and common history.

Today, after I got back from a walk, Brad surprised me. He had been working on something for a while, I knew because he was being very secretive. I walked into the bedroom and found 18 gifts wrapped and arranged on the bed. I was confused. I looked to him for answers.

"If we had fallen in love when we first met, these are all the Valentine's day gifts I would have given you" he says. I tear up.

I mean, how can I not?

Without opening any of the gifts, I know then and there that this is

the most thoughtful gift I have ever received in my life. Each gift is accompanied by a heart shaped piece of paper on which he wrote the year it represents.

18 gifts, all beautifully wrapped, one for each year we missed

And so it begins.

Gift 1 - For the year 1994 - A heart shaped chocolate on a stick.

Gift 2 - For the year 1995 - A gift certificate for a manicure

Gift 3 - For year 1996 - A gift certificate for a pedicure

Gift 4 - For year 1997 - Pajamas

Gift 5 - For year 1998 - Starbucks gift card

Gift 6 - For year 1999 - 2 pair of fleece socks

Gift 7 - For year 2000 - the year I gave birth to my first child - letters for all of us in our family (mine is S - for Shelly, that's what he calls me)

Gift 8 - For year 2001 - aroma therapy bath foam

Gift 9 - For year 2002 - a bottle of wine

Gift 10 - For year 2003 - another set of pajamas

Gift 11 - For year 2004 - black rain coat with hood

Gift 12 - For year 2005 - First book of the Twilight series came out

Gift 13 - For year 2006 - Second book of the Twilight series came out

Gift 14 - For year 2007 - Third book of the Twilight series came out

Gift 15 - For year 2008 - Fourth book of the Twilight series came out

Gift 16 - For year 2009 - an i phone cover

Gift 17 - For year 2010 - a framed picture of us

Gift 18 - For year 2011 - a wall plaque for our bedroom

By the time I finished opening my 18th gift, an overwhelming feeling of love and gratitude came over me. It is moments like this that I know that no matter what my doctors have told me, I am surely the luckiest girl in the world.