Twenty Years and Counting

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I’ve got so much running through my head right now, it’s hard to know where to start.

20 years ago tonight I was in my first weekend at Boston University, and long-story-short, I met a guy. Who is currently asleep next to me on our couch.

For the last three days I’ve had a chance to go in to my office and soak up the energy of being around amazing, smart people who are not related to me or sitting on the side of a pee-wee football field, and who make me feel both loved and smart, but it was hard.  I kept forgetting to take my muscle relaxants… which isn’t smart since I was also putting some extra stress on my arms & chest by sitting upright all day (I’ve been reclined most of the time while I’ve been home, and I didn’t realize that it was helping as much as it was) and carrying things like my bag.  None of it’s a BIG deal, but added up, it’s wiped me out. I’ve taken more oxy earlier in the night than I have in at least a week.  And I’ve woken up with a massive headache.

But I wanted SO badly to be around people and feel useful.

Yesterday I also went to work for the first time in my whole life without a bra on.  I felt completely naked, even though I had on a t-shirt, cardigan, and a scarf.  So at lunch I went and bought a bra… and that experience could be a whole post on its own.

And tomorrow afternoon I talk to the genetic counselor… to learn a little more about my cancer and perhaps the future of my ovaries, again, a post of its own.

But today I got a call from my medical oncologist’s office, and I had to go pick up a prescription for steroids that I have to start taking in the morning & evening the day before, day of, and day after treatment.  I take one at 8a, and another by 4p, because it will make it hard for me to sleep.  I think I’ve had exactly one good night’s sleep since I found the lump.

These steroids will also make me hungry, even while I’m undergoing chemo which will likely make me nauseous. My hands and feet may swell. The pharmacist told me not to even read all of the possible side effects, since they are more for people who take it in higher doses, longer term.

But things are getting real, and to be honest, I’m getting scared.

Luckily I wore my new boots to work all day today & they felt great.  And other than talking to the genetic counselor, I’m also going to talk to someone from Bright Pink and find myself some more support from someone who knows what I’m going through.

So I’m going to go curl up with the guy who has been here for me for the last 20 years, and hope for sweet dreams of the next 50.

Hands In The Air!

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I had another song picked out, although now that I think of it, No Drains would have worked better for last Friday, but when I didn’t get a fill, that was the song that somehow popped into my head.

However, this little flub of an oldie but goodie (where I mess up the line because my 9-year-old hasn’t watched his TMBG videos in a long time) is a good place to focus, right?  Plus, this song always makes me want to dance a little… or at least clap my hands.

This weekend was fairly uneventful.  I fell asleep mid-day on Saturday, which you might think I do a lot, but really, not so much. I’m still having problems sleeping all together, so I just figured that I needed it.  In general the worst thing of the weekend? The Pats lost. And since that REALLY doesn’t affect my life other than how sad it makes the human boys at my house, it’s really not so bad.

So on to today… I went in to the office again, and saw my clients again.  It’s kind of fun, because people are just so surprised to see me, and I really do miss being around adults who know me as something other than my kid’s mom. Not that I don’t love the football parents, but it’s nice to be appreciated for my brain, vs the much more impressive one between my kid’s ears.

Anywho, part of why I went in was that I had an appointment to get my tissue expanders, well, expanded (remember, Pump Up the Boobs?) but the first thing I did when I saw the medical assistant who would do the fill is ask if it was OK that a) I was leaking out of the place the drain came out of Saturday when I took my shower (yes, GROSS, but it’s fine) and b) if one spot on Righty looked OK, since when the scab started to come off in the shower it looked a little icky, like there was some puss or something. It’s evidently just some clotting tissue that can prevent getting a “good scar.”  Not a big deal, but since it’s not healing as well as they’d like, I didn’t get a fill.

So I guess today I had my first real setback. Keeping the effing drains for almost a month isn’t REALLY a set back, just something irritating. And having the chemo was relatively expected. But to have to put off a fill and to go back on antibiotics because one of the wounds is not healing quite right, and I have to put gauze & Neosporin on the spot that looked all icky to help it heal better, that’s really not so bad.

But if that’s my biggest setback, I’ll take it.

The GOOD news today is that other than the spot, my wounds look good and I’m able to raise my arms all of the way up in the air as pain dictates.  So Righty can totally signal a touchdown next weekend… Lefty may take some more work, but I’ll get physical therapy for that in a few weeks.  Now I just need either my son’s team or the Pats to score one for me. Anyone that can get to work on that for me? Thanks!

Everybody’s Working For The Weekend

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Yep, got them out!

Today is awesome, not only because I got both of the drains removed, but because my awesome new boots-for-a-ninja-to-wear-for-chemo came in the mail.  Took me several days to pick them, and I may have to send back an entire order at Old Navy when the sidekick sees how much they cost, but since I don’t know how to make anything fit my body right at this point with the small, but slowly growing boobs, that’s OK-ish.

I do have to be careful about too much arm movement since I was on the borderline of being able to have them removed, but this means that the place they were will have a full week to heal before I start chemo, which is good. This also means that at approximately 12:30p tomorrow I will be able to take a shower that does not include taping plastic to my sides, which is REALLY good!

In fact, at this moment, my girl cramps are worse than any thing involving my chest.  I don’t know that is GOOD, but it is definitely progress… which is another thing to make this a fabulous weekend.  Add in sun in Seattle (although I would love to see one more overnight rain to clean the haze out of the are), and I’m back to feeling like life is pretty darn awesome.

Hope it’s a fabulous weekend for all of you too!

Sweet Dreams Are (Not) Made Of This

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No real updates, I called to ask the nurse if a week of 35 cc is close enough to remove effing drains. No such luck.

Last night I had one of my first dreams that I can remember vividly in a long time.

I was bald and kept trying to tie scarves on my head and couldn’t figure out how to do it right. Ended up in tears.

Gee, wonder what THAT was about? 🙂

Let’s Get It Started!

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So to answer the quick & easy thing, drains didn’t come out today, but Righty was down to 20 cc last night, so if she stays low tonight, I’m calling in the AM. Lefty was 35… we’ll see.

Today I met with my Medical Oncologist, and he confirmed that I really, really don’t have to have radiation (woo hoo!) but that because of the pathology of some of my tumor I do indeed need chemo.  I was given two options:

    1. I could go the traditional chemo route, which includes likely nausea and hair-loss, but would not require me to have a port implanted in my chest and would be delivered in four infusions over 3 months (really, 9 weeks although it will be in my system for 12 weeks)
    2. I could go with a gentler route, likely keep my hair, but would have to take oral chemo daily and would have to go in for an infusion every single week for 6 months

 

Being the absolutely not patient sort, knowing people who have had some trouble with long term chemo (including my mom’s continued neuropathy almost 2 years later) and wanting to be on the other side of all of this as soon as possible, I’ve picked door number one.

      • Beyond needing to be done ASAP,  I know both my mom and a friend of mine who had colon cancer had problems with part of the “gentler” cocktail.
      • I do worry that more time means more exposure to the kinds of things that caused mom’s long term side effects.  Of course her treatment was different, but the dream of being done with the worst stuff by the time I turn 39… that’s big stuff.
      • MAYBE I’ll even be able to do new boobs for my husband’s 38th birthday in March… then he’d have to come up with something REALLY cool for me for MY 40th birthday. I mean how do you top new boobs?

 

This means I will start this stage my treatment next Friday, 9/21, and my last one will be 11/23… yep, Black Friday for you, Pink Friday for me!  As you know, none of this is fun or easy, but I’m a little bit excited to be able to start making long term plans and think past treatment to true recovery.  The drugs in this cocktail are Taxotere and Cytoxan (so it’s called TC treatment), and then a bunch of stuff to help with the side effects of those two.

Here’s how my chemo days will look:

      • Blood test to check things like my white cell counts and liver function
      • First time only, I meet with a nurse for an hour to learn about WTF is about to happen to my body
      • Sometimes there’s a break, then I do 90 min of Taxotere
      • Maybe a lunch break, then 90 min of Cytoxan

 

I’ve decided to have the treatments on Fridays so that I’m able to recover over the weekend.  On the off days I’ll have things like appointments with my medical oncologist, Dr. G, and more pumping up the water balloons… and working as much as I can handle to stay out of the Honey Boo Boo boredom zone.

I won’t start to lose my hair until I’m a little ways into this, likely not after the first treatment, but the second treatment or so. I’ve got a little bit of time to research hats, scarves and wigs, as well as a local wig maker who will make one out of your own natural hair… although I’m thinking I’ll do something crazy too. Because I can.

What I have less time to pick out is a pair of kick ass boots to wear to chemo. Also, because I can.

Sigh

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Not using the previously mentioned title out of respect for getting songs stuck in your heads… and since I was not in the mood for the song I’d previously identified when I posted last.

So as expected, the drains didn’t come out at my appointment on Friday.  And even though I sat around all weekend, even taking a big ol’ nap on Saturday, I was only down to 35 cc on both sides last night, so I’m not holding my breath that they’ll come out tomorrow.  Sigh.

The other revelation was that this whole tissue expander business HURTS!

I know, I should have known that it would hurt to fill a water balloon under a muscle, but I was told that the first few fills aren’t too bad.  The “not too bad” failed to take two things into account.

    1. I’m still healing from the actual surgery (hence, I still have the damn drains in)
    2. Since I’ve “got the room” they doubled my saline, so I now have 220 cc of water in the balloons… and the 110 I started with is twice as much as my plastic surgeon said she usually starts with at the time she does the implants.

 

So this weekend I’ve been a little down. Nothing crazy, just frustrated and sitting in my husband’s chair all of the time. Which frustrates me.  I’ve told a couple of people this, but I actually got bored enough to watch “Here Comes Honey Boo Boo,” on TLC.  Although it does have the advantage of making me feel like a WONDERFUL parent, I’m pretty sure that its current ratings are a sign of the apocalypse. Seriously.

I may not be holding my breath about getting the drains out tomorrow, but I will cross my fingers.  To me, beyond no longer having bags of fluid that I’m walking around with attached to my body,  they symbolize that I’m healing enough to really move and go out into the real world.

The other thing it will mean is that I’m able to sleep without being protected by pillows.  I haven’t slept well in a couple of months now between, worry, warmth, cold, pain, and the fact that with drains in my side, I’m not able to be on my side like I’d like.  I also can’t cuddle up to my husband comfortably, which is probably the worst part of all. I’m a cuddler, and to be stuck alone in a chair because it lets me recline without all sorts of odd pillows & propping.

I know I don’t have it that bad, and I MAY even learn tomorrow that I don’t have to have chemo (fingers crossed, breath not held on that too) and once I feel more completely healed I will suck it up more about the pain, but it’s now been 3.5 weeks since my surgery and I HATE waiting.

BC SUCKS!

Rollercoaster, of Love (Say What?)

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At this point I’m assuming anyone bothering to keep up with my trip knows me at least a little, so you may be familiar with the fact that I have a constant internal soundtrack going… and I regularly give moments a theme song.  So if my titles get a song stuck in your heads… sorry.

Thursday was a roller coaster day.

UP- Team meeting conference call, everyone was doing well.

DOWN- Came home after dropping off kid at school to empty, lonely house.

UP- Got dressed in adult clothes, went to the office.  Saw lots of people, got some work done, returned containers from the week of feeding the family.

EVEN HIGHER- Lunch with best boss ever. Go to client’s office and get great feedback on some work we’d spent the last few days (and weeks) on. And best of all- made an appointment with my medical oncologist for next Tuesday AM to find out once and for all (I HOPE) what the chemo plan looks like so that I can make PLANS and move on.

If the day had ended there on the high, it would have been awesome, but of course that’s not how the world works.  I drove home feeling pretty good, and proud of myself that I managed to drive all the way into the office (my SUV is more comfortable for me to drive than my husband’s Mazda 3 because of how upright I sit in it) and see people, even do more hugging than I’ve done in the three weeks since my surgery.

LOOP-DE-LOOP- Son had good day at school, but hardly ate lunch. Worked on homework, but didn’t want to do spelling, and had a fight with his dad. I was sore from being so active, so I was snotty and got into the middle of the fight, but by bedtime, it was all worked out.

DOWN- Drains, which were at 35 cc each (which would mean at least Righty could come out when I see plastics today if I stayed below 30 since it was at 30 the day before) were at 60 and 40.  SERIOUSLY LEFTY? 60?? So at 11pm when I’ve been checking the drains, my husband who leaves the house at 6a is snoring, and I’m struggling not to cry. And to fall asleep.

However, it is now a lovely, sunny Friday in Seattle.  I just had a great conversation with a colleague who TOTALLY gets it, because she is also a PR pro, mom, and kick ass survivor.  And I’m about to drive in to see plastics about my 1st fill. Cross your fingers for me that the drains go… and MAYBE I’ll post pics from before & after… next blog: Pump Up the Boobs.

Tales of a Fourth Grade Mommy

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It’s ironic to me, I’ve had “Tales of a Fourth Grade Nothing” in my Amazon cart for a couple of weeks (I tend to pile things up until I come up with something I can’t wait for, then I place my order) thinking that it would make fun reading for my Fourth-grader… And today I get news from a friend that, iconic author, Judy Blume and I have something in common. Breast Cancer.

She is 74, and does not have a family history, but it goes to show that it really can, and does, strike anywhere. Everyone I’ve talked to has a mom, aunt, sister or friend who has fought cancer, and now, I’m hearing a ton of BC stories. (I’ve decided to always refer to breast cancer as BC from here on out, because as a BU grad, we all know that BC SUCKS!)

One of the stories that struck me the most was a colleague whose mom was diagnosed when he was close to my son’s age.  Nine year old boys aren’t great about talking about emotions and fears.  Mine is a pretty emotional kid, but I still worry how much he’s keeping bottled up.  He’s having a tough first week of school, and I’m hoping the relative chaos at home isn’t the reason.

So updates on me- last night I got down to 30 ccs on Righty, so there’s a good chance I’ll get at least one drain out Fri. And I made it 10 hours without Robaxin… should have only gone 7 or 8, but still, that I wasn’t crying after 5 when I’ve gone down from 1.5 pills to just one is good stuff!

Mastectomy Wife-beater Cami

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I know that’s not an “acceptable” term, but I never promised to be PC.  It’s now been two and a half weeks that I’ve been running around in this thing (yes, I have two, so they do get washed) but I just feel like it’s an undergarment all of the time.

I also know that I’ve got friends who have been curious about how my upper body looks now… and even people who come visit are very careful to meet my eyes at all times.  If only that was the case with the world when I had the cartoon boobs!

The Pear

The Wife-Beater Cami, complete with drain pockets

The bulges you see in the front (below the bulges that are my once and future boobs) are the pockets for the icky drain things. Was down to 35 on one side yesterday, but since I have to be at 30 for 2 days to get them out, I may end up waiting until Friday when I see plastics….

Anyway, as you can see, not attractive or flattering, but there’s what I’m wearing these days. I CAN take it off & pin the drains to something else but this is more comfortable.

So to update this weekend, pretty dull.  I did go grocery shopping on Sunday, which meant I was sore all day on Monday so I sat around like a big lump. As a review, here are things that evidently use my pecs and therefore make me sore:

    • Typing
    • Driving
    • Laughing
    • Lifting things
    • Leaning forward for more than a few min at a time
    • Sitting in bleachers for more than a couple of hours, even with neato seats with backs

On the plus side, I’m feeling better enough that I’m only taking Oxy when things are at their worst, or when I really, really can’t sleep.  When I don’t have the pins & needles feeling, and I’m low on my buddy Robaxin, it almost feels like I’m wearing an underwire.  Under my skin. I’ll be asking plastics if this is normal when I see them Friday.

Still no updates on Chemo or any other next steps… I’m about to call and see if I can get an appointment, since I don’t feel like I can plan the next several months of my life until I meet with my medical oncologist.

Need to stop typing and save the rest of my upright finger movement for work now, but if I don’t update, often, it’s not that I’m not well, it’s that I’m saving the PC time.

So tired, tired of waiting

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I’m a little out of it this AM- I woke up in more pain than I’ve had for a while, and when the Robaxin (muscle relaxant) and a couple of Aleve didn’t cut it, I’ve added in the Oxy again.  I HATE how it makes me feel (see As You Wish) but it makes me stop hurting, which is evidently what I need to do.

Usually, I don’t like to take a lot of pain meds for things that are muscular.  When it comes to a headache, all bets are off, but I figure muscle pain means that I’ve pushed something too far, so I try not to take too much.

In this case, I’ve been staying on the Robaxin religiously because it’s what helps the most. When I let it go, my pecs can twitch, and they ache and burn. Since I’ve broadened my range of motion I’ve been more sore, but I know that the only way to keep a range of motion.  It’s kind of a use it or lose it thing.  I also think that spending as much time as I have with my hands on a keyboard doesn’t help.  Even when I keep my wrists still, typing means small movements in my pecs… which makes them more angry.  The feeling is like I have a big, really tight bandage around my chest from my solar plexus to just under my armpits.

When the Robaxin wears off, it just feels tight and achy, but when it’s really bad, like today, it’s a pins & needles feeling, like my pecs have fallen asleep and just woke up.  I’ve had that feeling since the first time I woke up around 3a until I took Oxy at 10:30a… and even then it’s not really gone, just duller.

Tonight I’m going to try to take the kid to practice again.  It’s a lot of sitting, but if I get cold at all, then my body tenses up and it hurts. A lot.

And that doesn’t even go into the discomfort from having the JP Drains in… I was hoping to get them out so the drain sites could start healing over the Labor Day weekend, but that was not to be… I’m still putting out 45 cc/day and I have to be down to 30 cc for two days before they go. The drain sites are getting less sore, but they are still gross, and still keep me from laying on my side… and from cuddling with my boys. That’s the worst part of the last two weeks. I can’t wait until they are OUT.  (Here’s a link on how they work, although I have a separate site where they are attached instead of disturbing the healing on my main surgical site when they finally do come out.)

I do have one other update- next Friday I get to go back to plastics and they will start filling the deflated water balloons (aka tissue expanders) in my chest that are causing the pec pain.  I’m looking forward to getting back to having something other than wrinkly lumps on my chest… after 38 years as an hourglass, it’s hard to suddenly be a pear.  I just hope the fabu boobs that are supposed to be at the end of this road are worth it!

With that, I’m going to check in with my boss and maybe take a little break from this PC thing.