The Phases of my Follicles*

It's a slow news period around here these days, so I thought I'd take a look back through my pictures to see how my looks have changed since my carcinoma adventure began.  Well, my hair anyway - I guess the rest of me is basically the same except for extra poundage....oh, and this expander thing in my chest, but that'll be gone soon enough.  (Exchange surgery is scheduled for October 30th, if you haven't heard.)

Anyway....  Here was me at the beginning of all of this.

Totally lifted this from my husband's blog.

On February 6th, I started chemo.  My hair started coming out about two weeks after that and we shaved my head on February 22nd.  Funny how you remember those dates, isn't it?  Anyway, here I am a day or two later.

It was February and it was freaking cold!

Classic cancer patient look, isn't it?  Well, I decided to try to not look that way and a day or two later took this one so the world could see me sans hair.

It seems like this was eons ago.

Remember the wig?

Ha!  Nope.

I still had a bit of stubble, but eventually that went away as well and I was left with a shiny, yet well-shaped, scalp.

This was half-way through chemo

If it wasn't too cold out, I'd go around home without anything on my head, but when I went to work, I'd throw on a scarf or a hat.

I had just come from work.  

During Memorial Day weekend, I had absolutely had it with trying to coordinate headwear with my work clothes.  Accessorizing jewelry is bad enough.  I was just starting to get some peach fuzz on my head (Yay!)  I went natural from then on.

My last day of chemo: June 26th
Note: No eyebrow hair or eyelashes in this pic.  Yay for makeup!

Actual hair started growing in along-side the peach fuzz, but it was growing in platinum blonde (not grey!), so it kind of blended in and looked like a halo in the right wrong light.

In the sun mid-July

Finally, the fuzz went away and it was all hair.  Short.  But it was actual hair.  And it was getting a little darker as it came in.  It was like natural highlights.

My last day at work before my mastectomy.

Now I think I can say I have something along the lines of a pixie cut.  I think I might actually have to get a trim pretty soon!

Celebrating "Drink Beer Day" on Sunday.

Looking forward to the "awkward hair" phase for the next few months, but at least it's hair again and I don't get the double-takes that I used to get.

*I was going to title this "Follicular Phases", but then I noticed on the interwebs that there's a completely different definition for that that has nothing to do with my head.  

Forward Progress

It's been a non-eventful yet quite eventful couple of days here depending on how you look at things.

Monday, I got my stitches taken out from where they removed my port.  Nothing there now but a lovely scar that I'm going to try to get rid of.

Yesterday was another day spent in Milwaukee.  First was physical therapy.  I'm doing so well that I don't have to go back.  Yay!  I've been cleared to exercise as long as I listen to my body and don't overdo it.  Seriously, I don't think this is going to be a problem.  I'm basically starting at square one again.  Doing exercises with two-pound weights makes my arms shake.  It's so sad.  But, between that and Couch to 5K, (and eating better) I'll be starting to get back into shape again and will eventually (hopefully) be able to get back to the point where I can do the old Focus T25 workouts or even Insanity again.  Time to kick my own ass again!  Well, I'll get there.  And there will be another hiatus when I have my next surgery - the exchange.

After a fast-food lunch, our last stop in Milwaukee was a conversation with the plastic surgeon (and his nurse, and a resident...I have so many more people to add to my list of people who have seen me topless) regarding what to do next.  I had to choose between using my own tissue or going with an implant.  Though I would love to use my own belly tissue (I've got plenty to spare), it means being in the hospital for an average of 5 days and I just don't have the vacation time any more.  It was eaten up with my first surgery.  Swapping out my expander with an implant is outpatient surgery.  I can handle that.  Anyway, my boob has been ordered and the scheduler should be calling me within the next 7 business days to give me a date.  All I know at this point is that it will be sometime this year (I'm thinking early November).UPDATE: Surgery is scheduled for October 30th.

Unfortunately, the surgery to augment the other side won't happen until next year.  They have to wait until the other side is healed and settled to make sure they get the symmetry right.  Sigh.  Oh well, there's still progress being made and once I get into a bra, an actual underwire bra with support and such, it'll all be good.  (The expander doesn't fit into a bra with actual cups, so I've had to wear the equivalent of a light-support sports bra this whole time.  Doesn't provide much help to my other side if you know what I mean.)  Thankfully, the only person who will see the difference that I'll have for a little while will be my dear husband who has been looking at this armor-hard pseudo-boob with a nasty incision since the end of July, so it will be an improvement.

The implant (possibly plural if they decide to do an implant on the other side for symmetry's sake) will end up having to be switched out down the road - ten years or so.  I can always make the choice at that point to use my own tissue.  We'll see how things go.  I don't know that I want to be a seventy-year-old woman with implants.  The thought of that makes me giggle.

Anyway, no more appointments for me until I have to go in and sign consent forms for my surgery.  Yay!!!  What is this, the first time in 9 months that I've gone with absolutely no doctor or lab appointments for at least a week?  It's a miracle!

Random 12

Phantom nipple pain.

That's a new one.

The Question

The question I get asked most often (other than How are you feeling?) is some variation of  "Is your cancer gone now?"  

I've never known how to answer this one, because really - how do we know for sure?

So, I had to ask my oncologist, who I just happened to have an appointment with yesterday, what to tell people.  He said that I can officially say yes.  He said I can say I'm in remission (though I've read that that's not really said until 5 years of being cancer-free) or that I'm a survivor (ugh), that I've won the battle (double-ugh).  Because as far as we know, they've gotten rid of everything, my treatments are done and I'm moving on.

Then he went on to say (exactly as I stated above) that we never really know for sure.  He equated it to pulling weeds.  We pull them, try to get all of the roots, but we never really know if there's a little root left behind or a seed that landed somewhere else until the weed shows itself again.

He said we watch things closely, we do our best to make sure it doesn't come back, and that if it does, we find it early and deal with it quickly.  (I love my oncologist - he's honest, well-educated, and above all a human being.)

So, I've decided that the next time someone asks me "The Question", my standard response will be:

As far we know, yes, it's gone.

I don't want to sugar coat things for people and give them false hope that it will never come back.  I think most people know of that risk, but I can't sound like I'm living in some sort of fantasy world either by saying, "Yep, it's gone - I'm all better."  There is no cure.  There's only the hope that it is actually gone for good thanks to the treatments I received and the medication I'm on now for the next 5-10 years.  Odds are pretty good that it'll all be fine, but there's always that chance.  As my doc says, "If it's in the cards, it's in the cards," and I totally get that.

Anyway...so yeah.  As far as we know, it's gone.  

I'm sorry - I couldn't resist.  Ha!

What About Me?

I hate it when my ego gets the best of me.  I really do.  It's unpleasant and ugly, so thank goodness it doesn't show its nasty face more often.

You know my work story - working from the chemo chair, working from home 2 weeks after surgery until I was good enough to get to the office.  Full-time all the time, blah, blah, blah...

Today was our employee appreciation party and I was bitter.  I've never been thanked for doing this work.  If anything I've gotten the opposite because HR wasn't happy that I was working from home because it might send the wrong precedent for other hourly associates.  (But those managers sure were happy when they started getting their reports again. And again - no thanks.)  My co-worker was nominated for Associate of the Month for picking up some of the slack while I was out, but me - the one who was working into the evenings to make sure they got their commission checks...nada.  Don't get me wrong - I was glad she was nominated for her help, but she wasn't picking up all of the slack because I WAS STILL WORKING!

I wasn't even going to go to the party except 1) I wanted to support my co-worker and 2) it was a football theme so we could wear something to support our favorite team and I'm always happy to wear my Matthews t-shirt.  Anyway, I went, I ate, I clapped half-heartedly for the nominees and the winners, didn't win any prizes, and went back down to my office, closing the door behind me.  I wanted to be left alone.

And then I started laughing at myself.  What a whiny, selfish bitch I was!  One shouldn't expect to be thanked, though common courtesy would kind of dictate it in a situation like this, it still shouldn't be expected.  I was blaming them for being so selfish when I was doing exactly the same thing.  Shame on me.

Then this song popped into my head.  This is an oldie and you've probably forgotten about it, but this was one of my favorite moody pre-teen wallow in my own self-pity while I crank up my boom box and sing along songs.  Enjoy!

"I guess I'm lucky, I smile a lot, but sometimes I wish for mooooooore!!!"

Oh yeah, belt it out and cry, little girl.  Belt it out and cry.

Stupid Cancer Memes

Oh, how I hate this one:

Oh, were it only the one thing that we wanted, it would be so much easier.  Just because we have cancer, the rest of the world doesn't stop. Life carries on.  We have work, family, friends; lives that hold happiness, sadness, stresses that have nothing to do with getting rid of cancer.  That's just another huge component of our lives that's been added on to everything else.

We want to "win the battle" (another phrase I can't stand), but at the same time we're worrying about bills, getting our work done, insurance, normal everyday issues that pop up like broken cell phones, cars that need fixing, our children and their schoolwork, our significant others and their lives, their stresses over what's going on with us, our treatments, how they affect us, how to carry on with regular life. WANTING to carry on with regular life, while this silly "battle" wages on.

Please, when you see this pop up in your Facebook feed, be one of the supposed "97%" who won't re-post it and instead, shoot a friend who might be going through a cancer-related stress - be it their own cancer or a family member or friend - a message just letting them know that you're thinking about them.  Check in on them, try to make them laugh, or just say Hello, I'm thinking about you.  It's so much more helpful and supportive than re-posting a meme.

The Awesome Hair

This is the hairstyle that I keep getting compliments on. Co-workers, doctors, nurses, people at the store. It's a big hit. They just don't get why I'd want to grow it out because it looks so good! The "cut", the color...all superb. (I wash it and dry it with a towel in the morning, that's it.)

I want to be me again. The me I remember had long hair. If, after I've grown it back out, I decide to go short again, so be it, but I need to go back to normal first.

Decision Made

We got a second opinion from another radiation oncologist on Thursday who had basically the same opinion as the first radiation oncologist we saw:  I'm in the grey zone; because of my age would like to overtreat instead of undertreat; I'm one of those cases where they just don't know if radiation is truly necessary after chemo was done first, and I went node positive to node negative (they don't even take pathology results into consideration because at this point they still treat based on initial diagnosis, but I could be part of a clinical trial that is trying to answer this very question.  Same thing.  About the same numbers.

Here's what it boils down to:
Right now, my chance of getting cancer again ranges between 10%-15% (one of the docs said closer to 20%, but I trust the one who was holding a medical book with actual numbers and graphs)
If I were to have radiation the number would decrease to about 5% or so.
On the other hand, if I had radiation, my chances of getting lymphedema ranges around 20%-30%.  (One doc kind of poo-pooed it off, the other was pretty serious about it.  "Radiation comes at a cost" is how she put it.)  There are also major skin issues that could pop up, my reconstruction would not only be postponed to next summer, but the scar tissue created by the radiation could make the reconstruction more difficult and look less natural.  Not to mention chances of developing other cancers, heart and lung issues, etc.

So, do the risks outweigh the benefits?  What would you do?

Chris and I have been dwelling on this decision for weeks now.  I think we've shed just as may tears over making the "right" choice as we did when I first found out about the carcinoma.  Here's what we've decided.

No.

I'm done.  No more.

Going from a 15% to a 5% chance just isn't enough for me to risk all of those side effects.  If I had a 30% chance and it dropped down to 10%, then yes, by all means.  This just isn't enough for me.  I want to get on with my life!  Chris equated it to blackjack and I can't remember exactly how he put it, but things have been going so well so far, we don't want to take the chance with the odds they are that the one last treatment that was supposed to make me better makes the rest of my life miserable.

I could be a part of the study, sure.  It would help women in my situation in the future and I love that, but I want to make my own decision about what I do here.  The outcome could be in my favor, but I also have an equal chance of having to go through radiation.  Those are odds I don't like.

We don't know if cancer will rear it's ugly head again.  I would have that chance whether I had the radiation or not, but in the meantime I know I'm feeling good, I'm happy and healthy.  I'm going to be on hormonal therapy for the next 5-10 years to help suppress any possibly dormant cells from waking up, and I'm going to be taking such good care of myself and doing everything possible to try to prevent it - but who knows.  And if it does come back, treatments advance in that field so quickly that perhaps they'll know more and have a better way to treat it.

Anyway, that's what we finally decided.  Now I just have to grow the balls to call the doctor and say no thanks.  I hope you all can understand this decision, but to us, the odds just aren't worth it.

Now, we can all move on, I can start my hormone therapy and schedule the completed reconstruction.

De-ported

Ladies and gents, my port was taken out today.  Woo hoo!!

Here it is.  It's been inside me for 8 months, right under my skin.  For months, I couldn't stand to touch it - something foreign under my skin.  When I turned my head, I could feel that line going up my neck.  It made me feel like a cyborg, but now it's gone.

Don't mind the blood - it just came outta me.

I'm thankful I had it though.  It made chemo so much easier and that chemo did sooooo much for me.  95% of my cancer gone?  Nodes from positive to negative?  Hell yeah!

But I'm done with it now, and the removal of the port is a huge moment.

(Unfortunately the whole radiation thing is still looming in the backs of our brains so we're probably not as excited as we should be, but we're getting a second opinion on Thursday and will make a final decision by the end of the week.)

P.S.  When the doctor says, "A little poke and some burning. Sorry." before injecting me with something to numb me up, I figure he means once, not nine times. Holy hell!

Amazing Hair (Apparently)

Apparently I have the most amazing hair on Earth.  Well, one would think with all of the comments I get about it.  Complete strangers in the cancer clinic that I go to comment on it.  "That cut looks great on you." "It's just growing back in after chemo," I reply.  "It really works with the shape of your face.  You should leave it that way!" "Uhhh....thank you?"

Every nurse I've seen - and I'm not exaggerating. EVERY nurse makes some comment.  Is that your natural color?  I love that cut!  You have the most awesome hair color.  

It's very nice of them and all, but I want my long hair back - even if it's just above my shoulders I'll feel more like myself.  At least my hair's at the point where I don't get stared at anymore - where it looks like an actual voluntary hairstyle and not creepy cancer chick.

I can't wait to hear everything people have to say about it when I go back to work tomorrow.  Sigh.

Heavy Lifting

Since my range of motion has improved to the point where it's almost back to normal, my physical therapist has added weights to my exercises to start strengthening my muscles again.  Yep, I'm lifting one-pound weights, my friends.  Look out, pretty soon you'll start confusing me with She-Hulk.

Well, you know, except for the green skin and dark hair and...well...yeah, never mind.