Monday, March 13, 2017

6 week update

Six weeks?  Has it really been six weeks since my surgery?  It's hard to believe because I am in such a different place than I was just three weeks ago.  So here's what's been going on since my last post--about 3 weeks ago.

--I'm back to work.  Thank goodness, because I am seriously broke.  Self-employed and about 5 weeks out of work is not a good combination.  The first week and a half back, I worked mostly half days partly because I wanted to ease back into it, and partly because I still had a shit-ton of doctor appointments. All these specialists are over an hour away so it's really a half day off for one appointment.  It's a full time job to have cancer.  I will say, if I have learned anything from this adventure, is that anyone, I mean ANYONE, is just one medical condition away from being in financial duress.  No one is immune to this. And I even have health insurance!  For me, it's not the medical bills that are the issue (although I haven't seen the brunt of those come in yet), it's the fact that I never counted on me not being able to work.  It never once occurred to me that I could have something happen that prevented me from working.  My financial goal going forward, is to put myself in a better position in case I have a recurrence.

--I'm back to running!  After the 4th week post surgery, the doctor gave me the clearance to exercise again!  It's been so great to be able to move my body and sweat and exercise again, I can't even tell you.  I've probably gained around 5-7 pounds and it will be nice to work that back off.  The area under my breasts hurt the most when I started exercising again--the surgeon tells me that's where they sewed in the alloderm (cadaver tissue used in breast reconstruction).  That pain has since gone away and I really have no pain at all anymore.



--I've had two fills to the expanders and even though my breasts feel bigger than they were, the surgeon tells me they are not.  (Because clearly I know more than he does, right?)  I didn't really believe him until he showed he took out X volume of tissue and we've only put in Y volume of fluid.  Huh.  Well, ok then.  It must just be because they are higher and harder.  But seriously, they are like hard gel-filled mounds.  It's really a weird sensation.  I think I'll probably choose one more fill and call it good.  I want to be at least a little bigger than I was prior to surgery, right?  And I would totally show you a picture but this is a family friendly blog, so sorry!

--I don't need to have chemo.  What a relief that was.  Initially, it wasn't even on my radar since no one had previously suggested that I would need it given that it was not in any lymph tissue on any biopsy.  Then I met the oncologist and she wanted to have the Oncotype Dx test done on my tumor so she could make better decisions about what treatment she would recommend to me.  I WAS NOT happy about hearing that chemo was a possibility.  Fuck that.  Basically, the Oncotype Dx looks at the genetic characteristics of my tumor and then assigns a number on a scale that will tell you if chemo might be beneficial in reducing recurrence rates.  I had already decided that I was going to decline chemo even if the testing showed that it could be helpful.  That was not a road I was prepared to go down.  And we were talking reducing recurrence rates from 15-12% to 8-7%.  I just didn't think it was worth that.  But anyway, my number came in such that chemo would not be beneficial, so Yay.  I started tamoxifen and have been on it for a week and haven't had any side effects yet.  <crossed fingers>

--I did give up the idea of running the Sugarloaf Marathon in May.  I clung on to it for a little thinking that maybe the recovery from surgery wouldn't be that bad.  It wasn't that bad, but I am in no way prepared to run a marathon.  Half marathon, yes.  But full?  No way.  So rather than defer my entry to next year, I decided to switch to the 15K so that I could run with all my Boothbay friends who are signed up this year.  My BQ can wait.  Maybe until the next age bracket.... lol

So basically, things are back to normal ish now.  I'm working every day, I'm running or exercising almost every day, kids and husband are back to letting me do most of the housework <roll eyes>.  I keep trying to play the cancer card, but it doesn't always work.

Everyone keeps asking me when I'm going to have my implants put in which drives me crazy because I don't know.  I literally have no idea.  I guess when the surgeon says it's time, then we decide.  I guess I choose a size and then when I get there, we choose the date.  I'll let you know though! ha




Friday, February 10, 2017

on doing nothing

So apparently, I suck at post-op recovery.

I pride myself on being able to take care of myself.  I don't need help.  I don't really want help.  And apparently, that is not the way to recover from this surgery.

I went back on Tuesday (in a snowstorm, of course!) for a follow-up appointment with the plastic surgeon.  I was supposed to have the last set of tubes removed and be able to wear a regular sports bra.  Unfortunately, the fluid output was too high for him to remove the tubes.

He started to say something about scheduling an appointment for next week and I almost lost it.  That means another weekend in this stupid bra with tubes sticking out of me.  Another weekend of no shower.  Another weekend of shirts that are big and bulky and another week of being out of work.  I swear to God I'm going to kill someone.

He went through the exam and said that everything was healing nicely and I looked good.  But in order to reduce the fluid output, I have to do less.  He asked if I was doing housework and increasing my activity.  Of course, I was.  He said the fluid won't decrease output until I slow down and stop doing things I shouldn't be.

I don't sit down well.  I don't "do nothing" well.  It's almost impossible for me to sit and ignore the dishes, laundry, dirty floors, whatever needs to be done.  It makes me crazy.  But that's the way to get these tubes out.

He made an appointment for me to see one of his associates on Friday and if I behave, I will be able to get the tubes out.  So for three days I'm going to do NOTHING.  If my family wants to live in a shit hole, then I guess we will live in a shit hole.  If no one does the laundry, then I guess they will just have dirty clothes.  Dishes?  They can eat with plastic forks and paper plates.  I don't care.

Fast forward three days.

My output of fluid has been down to less than 30 each day.  I have succeeded in not doing anything, nothing at all but watch tv and read.  It has been horrible and boring and shitty but these tubes need to be out.  There is laundry waiting to be folded.  There are some dishes on the counter.  But for the most part, the family has stepped up and done the work so I don't feel like I have to.

And I got the tubes out!

So happy! 

That's a regular sports bra and NO FUCKING TUBES!!

I got myself a little bit of a belly roll, but what do you want when you're sitting around for 2 weeks.  Still no exercising, no heavy lifting and only light housework.  ugh

But NO TUBES!!

Oh, and even funnier, I think my temporary boobs with just the expanders in, are bigger than my previous boobs.  I haven't even had a fill yet.  lmao


Friday, February 3, 2017

Post-Surgery Update

Happy February first!  It's a new month and I'm looking forward to moving on.  Last Friday I had my double mastectomy and now I'm at home enjoying (?) my recovery.

Friday we had a 7:00 am arrival at the surgery center down in Scarborough, which is over an hour away from my home.   I had to shower the night before with special soap and then again in the morning with the same soap.  I assume it was super-duper bacterial killing stuff cause it dried me all out and made me a little red and itchy.  

Anyway, we arrived at 7:00, right on time and proceeded to sit around until 7:50 before they took me in. This would be my only complaint about the whole experience.  Why not give me a 7:45 or 7:30 arrival time?  There is nothing worse than waiting and waiting chewing the shit out of my cuticles and waiting more to be taken in.  

Once they took me in, things moved along pretty quickly.  I met with the plastic surgeon and he got me marked up, the nurse got my IV going, the anesthesiologist came in with her nurse and started my block, my breast surgeon came in to mark where she was taking out the lymph node and then we were ready to go.  They gave me something that "relaxed" me, which it did, but it also got me all emotional and I was crying and saying how I didn't want to do this.  Thankfully, the kids were at school and it was just my husband and my mom there.

Fast forward to around 4 in the afternoon and I started to wake up.  Not very well, I might add.  Super restless, super irritated and just wanted to go back to sleep.  I think the surgery itself lasted around 4.5 hours and then I took another 2 or so to come out of it.  Time hop for sure.

They wanted me to get out of bed to pee.  Um yah, that wasn't happening.  So dizzy and faint every time I would sit up, let alone stand up.  That didn't happen until around 11 p.m.

They had me pretty rigged up with this bra that was like a bullet proof vest.  I had wires, batteries, pads, tape, and a shit ton of tubes to drain excess fluid.  Super uncomfortable.

 Post surgery--feeling no pain! ha

 Drain tubes sewn into me.  Yah, that's super comfortable.

And the whole thing.

It's kinda hard to find clothes to wear because I don't have a lot of zip up things and I don't buy clothes big so they aren't big enough to tuck all this junk into.  I've been wearing my husbands t-shirts  so I end up looking like that trailer park old woman whose size EE tits hang down to her waist and she gives no fucks and doesn't wear a decent bra.

Thank goodness I'm mostly staying home.  haha

I did have my first follow up appointment with the plastic surgeon yesterday and that was great!  They took out 2 of the 4 tubes and what a relief that is!  He also removed all the tape, batteries and wires so I'm much less encumbered now and oh my god, it feels so much better.  Next Tuesday the other drains come out and I get to wear a regular sports bra.  I cannot wait!

I also met with the cancer surgeon doctor yesterday (there are a million doctors to treat just this one breast cancer--they each do a different thing.  Jesus, it's hard to keep them all straight).  She went over the pathology report from the surgery.  All is as we expected--lymph node clear, Stage 1 (although the tumor was larger than they thought), and I should be able to move forward with my normal life.  I now have another appointment with a medical oncologist--probably to manage the tamoxifen I will take going forward--genetics to see if I have the genetic marker for breast cancer and still appointments with the plastic surgeon.

This is a full time job!  And of course, all the appointments are in Portland which is about an hour away from my home.  #annoyed

But so far, I've only missed one week of work and I think I'll be able to go back after next week.  Unless all these appointments mess me up.  I wish they would be a little more accommodating with regard to how far I have to drive and try to work around my schedule a little bit more.  It's frustrating to have to take a whole day off to get to one appointment.  Especially, going forward, I won't be able to afford to keep missing work.  I'm sure I'll figure it out, but boy, that is stressful.

So double mastectomy isn't as awful as I thought it might be.  People in my small town have been incredibly supportive and helpful.  It's overwhelming how kind people are.  We have had dinners made for us and delivered to our house every night for the past week and for the upcoming week.  You cannot imagine what a relief that is.  It seems like a small thing, like maybe you aren't doing much for the family and you want to do more, but believe me, having food ready each day is huge.  It has been such a help.  I haven't had to worry about getting groceries (that I can't carry or drive my car to), I haven't had to cook, there is very little clean up and new and different food is awesome!

I am so thankful for each and every one of you that has helped our family.  Again, it's overwhelming and I have gotten teary on more than one occasion.  (I don't cry, so that's a big deal.)

my collection of flowers

My dog has been my company this week and I have watched too many episodes of Hoarders (seriously, how do people live like that???).

her and my usual spot on the couch

Looking forward to updating next week with NO TUBES and a regular sports bra!  Stay tuned! 

Thursday, January 12, 2017

T-2 weeks

Today is not a very good day.  Most days I go about my business like nothing is even different.  Because you know what?  I don't feel any different.  I don't feel sick.  I'm still running 20-30 miles each week.  I go to work everyday.  I clean my house and feed my kids and it's life as usual.  I feel like every conversation I have about my cancer with a doctor or with a friend, I feel like it's a story about someone else.  Like I'm reading a book or a news article about someone in the community.

Someone else.
Not me.

But it is me.
It's Me.  I have cancer.  It still feels fake even as I'm typing it.

And today, even though I know that I have the non-aggressive markers, even though I know it's not in my lymph tissue, even though my PCP said it was 100% curable, today, I'm scared.

My breast surgeon called me two days ago with the results of the MRI I had.  I have another spot in the same breast in a different area.  It doesn't change the stage of my cancer or anything about the treatment except I now need to go back for another ultrasound.  She wants a marker in the spot where the second tumor is.  It's another one smaller than 1 cm, but seriously?  Another tumor?  This really pissed me off.  Like it's not bad enough that I'm 46 years old and have one tumor.  I need to have two?  ugh

The right breast was clear so that's good at least.  It doesn't help me much with my decision about choosing to have a single or double mastectomy, but at least that one is clear.  One less tit to worry about, I suppose.

So today all I can think about is the what ifs.  What if I can't work?  What if it comes back?  What if it's somewhere else and I have no idea because I AM HEALTHY GODDAMN IT!!

I am supposed to live to be 80 years old and see my kids get married and have kids and graduate college (not necessarily in that order....) etc etc.  That's what I am supposed to do.  But something like this makes you look at your own mortality at a time when I'm not supposed to have to do that.

This is probably going to be no big deal.  I'll get the surgery, I'll get new boobs and I'll move on.  But today I feel a little scared.  I don't want all kinds of pity and boo hoo's and sobbing though.  That just makes me feel worse.  Probably the nicest thing said to me so far was from someone I never would have expected.  What was said?  I will be there every step.  Almost made me cry.  Almost.

Schedule of events for the next two weeks:

1/18 8:00 a.m.--consultation with plastic surgeon
1/18 2:45 p.m.--another ultrasound and possible biopsy and insertion of clip at other tumor site
1/27 7:00 a.m.--surgery arrival time

Two weeks from now this will be all over with.

At least I hope so.  I hope there are not any more surprises.

Monday, January 2, 2017

bad news that isn't as bad as it could be

So I got to meet with the breast cancer surgeon last Thursday.  It actually went quite well.  I had a whole list of questions to make sure I asked her, but she was extremely thorough and I didn't even need to consult my list once.  She went over every last detail and took a full hour to do so.  (I can't even begin to imagine what that cost....)

The short story is:  I have a small <1cm sized invasive ductal carcinoma.  It is grade 1 which she explained but now I can't remember what exactly that means.  (I do know that it is good!) I am ER/PR + which means that the cancer cells have Estrogen/Progesterone receptors and that is good because then we can use tamoxifen post-surgery to continue to kill the cancer cells if any remain.  It is not good in that I have to remove my IUD because it releases estrogen.  boo  I have really enjoyed not being pregnant and not having my period for 11+ years now.  

It also has -Her2neu which is good because that is a growth factor, negative means it's not growing fast.  Lymph nodes are negative and it has a low ki-67/Mib-1 which is also good and means the proliferation index is low.  I believe she described this as a look at how quickly a single cog might turn in a machine.

The tumor is staged at Stage 1--small tumor size, nothing in the nodes and no metastases.

So, overall, this cancer can be 100% cured.  I have to have a complete mastectomy, including the nipple, because the cancer is too near the nipple for her to save it.  A complete mastectomy because basically my boob is too small to take the amount of tissue she needs to take and leave a decent cosmetic result after.  HAHA  She was very professional in the way that she worded that.  If I were a DD, then NBD, but since I'm an A--, sorry Charlie, the whole thing has gotta go.  Tamoxifen for 5-10 years and I'm good to go.

I have to have genetic testing to see if I have the breast cancer marker, I need an MRI to look at the right breast in more detail to be sure there is nothing there and I have to meet with plastics to figure out what I want to do for reconstruction.

I'm a little stuck on what I want to do for reconstruction.  I mean, obviously, I want to have an implant put in for the left breast.  Plastics will make me a new nipple and that is fine.  But what to do about the other boob is where I am stuck.  She said the two boobs really have nothing to do with each other and the likelihood of a mutation in my other breast is .2-.5%/year.  Pretty unlikely.  Genetics will tell me if I have the inherited risk and if that's the case, that number would be different.  MRI will tell me if I have any changes in the right one that might warrant removal as well.  But assuming they are both normal, I'm not sure what I should do.

Do I remove it anyway as a precaution and have them both reconstructed so they look alike?  Like what 46 year old wouldn't want new perky boobs?  amirite?  Is the recovery longer/more difficult if I do both?  If I choose to just do the one, will they look normal or will one be nice and new and the other old and saggy?  Also, if I keep the right breast I have to have an MRI yearly and a mammogram at the 6 month interval.  Forever.  That's A LOT of follow up.

I don't know what to do.  Honestly, I really don't care about my boobs.  I don't care about having big ones or new cleavage or any of that.  I really just kinda want to keep my boobs I have now.  Unfortunately, that isn't a choice.

I just want to look normal in a tank or a bra top.  That's really all.

So I've now gotten past the point where I'm pissed and I now have a plan.  I know what needs to happen and most of what will happen and I can just get going with getting it all done.  I know I'm not going to die from this and I can probably still run my marathon in May and do the relay in June.  I will be able to watch my kids' games and bring them to field hockey and basketball and baseball.  I'm gonna be able to work and support my family and not worry about my business.  And that has made me very relieved.

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Unrelated to the cancer shit, I ran 1049 miles for 2016.  I think that is pretty much on track with 2014.  I didn't total up 2015 but I'll assume it was higher since I was training for a marathon that year.  Probably should have banged out one more measley mile to make it an even 1050, but I said fuck it.

Races Run in 2016:

--Mid-Winter Classic 10 miler  February 1:27:01



--LLBean 10k on July 4 50:14  


--Beach to Beacon 10K August 49:58 *new PR 8:03 pace!



--Race to Respond Relay--7 mile leg from Newcastle to Wiscasset, Maine



--Millinocket Half Marathon December (in northern Maine.  In 12* weather.) 2:02:xx  I should definitely get badass points for that.

me being very shy about being on the news

coming in to the finish.  cold af

I'm still an InknBurn ambassador for another 6 months and then they will be cleaning everyone out and getting all new.  They have a bunch of cool new stuff so if you haven't checked them out lately, you should.

Happy New Year to everyone.  I had a lot of stuff planned for this year race-wise so I hope I get to do it all.  I'll likely be updating here regarding my treatment and surgery and recovery so stay tuned if you want to hear about that.

Any thoughts on the other boob?  New set or just the one?


Friday, December 23, 2016

2016 sucks

So.  Here I am.  Back at the blog again, but for a much different reason this time.  I'm still running and all that.  In fact, I'm signed up for a shit ton of stuff this year.  Just ran the Millinocket Half Marathon the other weekend and honestly, that deserves a blog post of its own, but will wait on that for now.

About 2-3 months ago I noticed that I had a dent in my boob.  Well, I noticed that my nipple was pointing a different way.  Nothing major.  My boobs are old, you know.  I'm 46 and breastfed 3 kiddos so you know that takes a toll on the girls.  I thought, well, that's weird.  But that was it really.  I guess this is what my boobs are going to look like now.  And didn't really think much of it.

I don't often see myself without clothes but each time I did, I just kinda thought "oh, well.  Poor boob looks weird now" and that was that.

Last Thursday, for whatever reason, I thought differently.  My mind finally had a rational thought and realized--uh, no.  This is not just old boobs.  Dumbass.  Maybe, just maybe, you should get a mammogram.

So I called the doctor on Friday.  Got an appointment (which was an adventure in itself, but not the point of this story so I'll leave it out) and went that afternoon.  Of course, he thought it was weird and of course, he agreed that I should have a mammogram.

Monday--mammogram scheduled at 1:00.  Should be about a half hour they said so I moved my schedule around so I could come back to see patients around 1:45.  yeah, nope.  Multiple pictures and then an ultrasound and shit was getting serious.  Biopsy scheduled the next morning 7:15.  I am all about doing it now and getting it over with.  Who wants to wait around for that shit?  Not me.

The biopsy was not really a big deal, 5 samples with a hole punch like needle thing and that's that.  Hurry up and wait for the pathology report.  I tried to talk myself into believing it was just a fibrous clump or some boring nothing thing like that, but deep down I had a feeling it wasn't going to be nothing.

The doctor called me yesterday and confirmed that I have a ductal cell carcinoma.  Low grade.  Which is guess is "better".  Whatever that means.  Off to the cancer care center I go.  Merry fucking Christmas to me.

I laugh at the irony of this since I don't smoke, I don't drink, I exercise almost daily, eat pretty decently and I am not overweight.  But yet, I get this.  Hardly seems fair.  And you know what, I don't have time for any of this shit.  I don't.  I don't even have time to wrap the fucking christmas presents and now I have to find time for surgery and radiation and god knows what else.

2016 has sucked balls and I am so done with it.  Fuck you 2016.  I'm pretty sure I don't deserve any of this stuff I've had to deal with this year.  But yet, here I am.

I hope 2016 treated you better than it treated me.


Wednesday, September 23, 2015

May-August Review

Wow.  I guess I really have been lazy in writing blog posts this summer. It appears as though I haven't done any mileage review since April.  Shame on me.

I have been running though.  And still quite a bit!

May
113.2 miles run

The big deal about May was I completed my first marathon!  Yay me.  Race report HERE if you care to read about it.  Basically, it was hot as hell, long and annoying at times.  I killed the first half and crashed and burned the second half.  Overall finish time 4:08 and change.  Not a BQ but a very respectable first marathon finish.

June
79.13 miles run
135 minutes of biking

My first month that was less than 100 miles since the beginning of the year.  I guess that's ok the month after a marathon.  Still, I was kinda bummed I didn't reach 100.

July
75 miles run
220 minutes biking

Another low mileage month.  Summer is busy people!  I'm not sure why, but even with all the extra sunlight, it was super hard to find time to run.  I did run a half marathon that month and had a respectable finish on another god-awful hot day.  I also broke my 10K pr at the LLBean Fourth of July race.  Race report HERE.  That day was humid too.  Lots of hot and humid weather this summer.


August
92.06 miles run
135 minutes biking

Not a single run over 6 miles in this month but lots of shorter ones and I guess if you do enough shorter runs, they total up to a lot.  Just short of 100 but still a respectable mileage total.

August was my birthday month and I'm now a fabulous 45 years old.  It's hard to believe that I'm 45. I don't feel 45, I don't think I look 45 and I certainly don't act 45.  What does 45 act like anyway?

50 is just around the corner and I really just can't believe I'm almost there.  It's really true what everyone says about getting old.  You feel the same way you felt at 20, but you clearly aren't.  In my mind, I'm still that same girl, but on the outside things just aren't what they used to be.  I hate it.  Getting old is not fun.  But at the same time, I like being alive too so I suppose the alternative isn't any better.

I can totally get why people have a mid-life crisis.  Thank God running keeps me sane.

kids got me a selfie stick for my birthday! best present EVER!


Ooooh!  In other exciting news, I got chosen to be an InknBurn ambassador!  I love their gear and have been applying for 3 years now.  Finally!  I got chosen.  Woo!

where it all started..... with the peacock skirt!

 dragonfly on my friend and I


Yup. It's a fish tank tank


Their clothes are different and cool and I love them.  No one looks like me when I wear them.  Like seriously?  Who has a fish tank tank?

seriously now.  Are they not the coolest??

Who doesn't want to look like a robot?  Their stuff is all made in the USA, hand printed, cut and sewn.  It's a bit more expensive, but it is so worth it.  The colors never fade, the designs are unique and different.  You will not look like everyone else.

Check them out at inknburn.com.

I hope you all had a great summer like I did!  Another year older.  Another PR.  Another grey hair. or 50......

Thanks for reading.  Hopefully, I'll be back at it a little more frequently now.