The Story of Jaxson's Departure

I'm really still too tired to do this entry, but I did some work from home tonight and am just now winding down. (Before you think my employer is an ass, please know that I'm doing it by choice to help make up time I miss for appointments, so it's a favor and it did NOT have to be done tonight...I just decided to get step one done.)  Phew.  What a disclaimer!   I got up at 4:30 this morning and made it to work by 6:30 since they've loosened up my schedule, but I will NOT be doing that tomorrow.  Not seeing what the clock is telling me now!  :)

Nurse Terri gave me the new wrap with tighter compression on Friday, and told me that as soon as I had two days under 30cc, they'd pull the drain.  I let her know on Tuesday that it was 25, and she said, "Call and come in tomorrow if it's still under 30 and we'll pull it."  It was 28.  Rock on.

I called as soon as the office opened on Wednesday, and the lady said, "We can get you in on Friday afternoon."  I nearly cried.  I gathered my composure and said, "But Terri said to come in this afternoon."  She asked if I was seeing only Terri, or also the Dr.  When I told her it was just me and Terri, she said, "Oh!  OK, how about 1:30 today?"  PHEW!

It was pretty quick.  She cut the stitch, told me to take a deep breath, and then said, "That's it!"  He was out.  She held a bit of gauze over the opening like they do after removing a needle after a blood draw.  After a few seconds, she pulled it off to look and said, "Oh boy!  Oops!"  and put the gauze back, asking me to hold it there while she got more.

She got more, I let go, and she said, "Woah!" as she put more on.  I would have worried, but she is amazing and kept telling me that it is nothing to worry about, it's normal after a drain is in that long, and it's better to leak out than to be retained inside.  OK.  She asked me to hold the gauze once again and got a thicker, plastic-backed bandage.  It was taped to me and we crossed fingers that it wouldn't leak, since I was going back to work.

It didn't.  I hit "the wall" around 4 and headed home.  I wasn't even 5 miles from work when it leaked a bit.  Talk about timing!  At least I was gone!  By bedtime last night, it was nothing but a tiny dot on the bandage. Kind of like what you have on the cotton ball they put on you after drawing blood.  After all day today, there wasn't even a dot.  I guess it's done.  Except...

I'm getting a seroma that will likely require a trip to the cutter general surgeon's office tomorrow.  I'm supposed to go to the plastic surgeon for the first fill of my tissue expander, and Terri and I have already discussed the fact that I'll likely be sent there for needle aspiration.  Cutter's office has an ultra sound, so they can do it while making sure they miss the tissue expander.

*sigh*  That means leaving work shortly after noon, going to Leawoodfreaking, KS, and then being sent to St. Luke's on the Plaza.  (That won't mean anything to anyone not from this area, but it's an inconvenient trip, OK?)  After all of that, I have to call the oncologist.  Yup.  Time to get chemo back on the calendar, now that Jaxson is gone.  I avoided that for today, just to have control over one more day.

Childish?  Yes.  Too bad!  Tomorrow, I'll act like an adult again.

Back to Work

I went back to work today.  I'm nearly dead.  Due to the "near death" status, this shall be a short post:

I have been napping daily, including yesterday.  Therefore, I couldn't fall asleep until after midnight.  Therefore I worked nearly a full day at work, for the first time in over 6 weeks, with only 5 hours of sleep.  That won't happen again.  I came home, exhausted, and refused to let myself nap.  I'll be going to sleep soon.  LOL   And I'll sleep well.

Jaxson played nice and only offered up 25cc, despite the fact that I stripped the drain several times to make sure nothing was slowing it down, other than healing.  Terri said that, if he's under 30cc again in the morning, I can get him pulled tomorrow afternoon.

I'm tired and must go to sleep soon.  Please cross fingers that this JERK drain leaves tomorrow.  I wanna blow him up with one of those TNT plunger things that Wile E. Coyote uses.  Yup.  That's where I've gone now.  It's completely out of control.  I've gone to the crazy place.

Attitude Adjustment and the Breakfast of Champions

I have not been posting much lately because I have had an attitude problem for the past several days.  Time to get over it.  A crappy attitude is NOT going to fix anything.  I think I'm done pouting now, and ready to move on.  Sometimes you have to say, "What are ya gonna do?" and just go along with what has to be done.

Therefore, I will most likely be going back to work on Tuesday morning.  I really wanted to wait until Jaxson's departure, since that will be a pain to deal with, but whatever.  He's been holding steady at 50cc per day for nearly 3 weeks.  I'm going to the plastic surgeon's office this afternoon just because they haven't seen me in a while and they cannot believe that Jaxson is this stubborn.  The record in that office is 7 weeks for a JP drain to stay in, and Jaxson's been around for 5 weeks and 2 days (but who's counting?)

It'll also be good to have them verify that there are no signs of infection from me having it so long.  I've been on pretty strong antibiotics since surgery, so I doubt it, but it's worth letting them take a look, anyway.  They won't remove it with the output being this high, but maybe they can give me some guidance as to why the amount hasn't dropped in 3 weeks.

I was up until nearly 1:00 am, watching crap on TV.  I had an alarm set for 5:30 so the drain amount that I give them today is for exactly 24 hours.  (Why did I have to wake up so early yesterday?  LOL)  The plan was to go back to sleep.  So much for plans.  Natalie was in my room, watching TV (I sleep in the recliner and Kevin was gone to work) so I spoke to her, and then I instantly started thinking about today's appointment, so sleep was futile.

I started having coffee and doing my typical, early morning internet surfing, and Natalie said she would make some eggs for me.  The only problem was, we are apparently out of eggs.  Dang.  What did she offer to make instead?  Or stranger yet, what sounded REALLY good when she offered?  Grilled ham and cheese!  She fixed one for me and I had some of my mega thin chips with white queso dip, and it was an amazing breakfast!  What a sweet kid I have.

Oh, and the coffee we've been having is the best coffee in the world (in our opinion.)  It can only be found in Texas, because it's a store brand at HEB.  You can order online, but the price gets really high if you do that, so we stock up when we go to Texas, and our Texas friends always bring some along when they visit.  The problem is, we haven't been down there in nearly a year, and our friends haven't had the opportunity to visit, so we've been out for quite some time.

Actually, another friend (not from Texas) ordered online and had some sent to us in bulk since we were there last (shout out, 'Shell) but it's been gone for a while.  Well, one of my Texas friends (shout out, Susie!) sent a care package recently with SIX bags!  It is SO good.  I think I'll go refill my cup.

I only have four more hours to kill until we leave for my appointment.  *sigh*  Wouldn't it suck if they told me I had to quit coffee and chips in order to get rid of this drain?  ARGGG!  ::shudder::  What a nightmare THAT would be.

Missing Girls and Sleeping Upright

My girls aren't really missing, but I was thinking about the name of mom's most recent blog post.  The girls are, however, both gone.  At 9:30, Natalie walked in and announced that she wanted to spend the night at a friend's house down the street and friend's mom said OK.  Why not?  Then Monica felt left out, so she contacted her usual hang-out house and headed over there for the night.  Welcome to summer in my house.

I was talking on a message board to another lady who has had her JP drain nearly 5 weeks (her surgery was the same day as mine,) and she said that she found out that it would drain less overnight if she slept sitting up more.  I've been sleeping in the recliner based on other recommendations, but when I wake up, I'm usually reclined back as far as it will go.  She tried sleeping upright and is getting her drain pulled tomorrow.

I'm trying to form a plan that will keep this reclining from happening.  I asked Monica to sit behind the chair all night and hold it up, but she declined.  Come to think of it, perhaps that's why she left for the night?  At this point, I'm willing to give anything a shot.  If I wake up lying back too far, I may choose the corner of the couch tomorrow, instead of the recliner.

OK, Monica has called to tell me she made it OK.  The distraction of typing this blog post worked.  Have a fabulous week!

Jaxson, HFMD, and Job Hunting

Jaxson is a big ol' jerk.  The quantity went up, significantly up, yesterday.  I almost let it break me.  My girls were here to watch season finales with me and keep me from melting into a complete pity pot, although I did post some pretty whiny stuff on Facebook and my favorite message boards.

There is a reason that this is happening.  I'm either not supposed to lose this drain yet, or I'm not supposed to start chemo on Tuesday.  I don't know what the reason is, but I'm sure there is one, so I'm going to shut my dang mouth about it.  Whining will get me nowhere.

I took Natalie to the Minute Clinic yesterday morning.  I told them, "She has a sore throat, sores in her mouth and spots on her hands and feet."  The nurse practitioner asked, "What are you thinking?"  I said, "I think she has Hand, Foot, and Mouth disease."  She nodded that she agreed.  Then she went to Bing on her computer and looked up the facts that she thought I should know.

The fact that I diagnosed her and they used a search engine didn't keep them from charging the full $25 copay. LOL  It's viral, so there's not much we can do other than Tylenol for pain and a prescription mouth rinse that helps with the mouth pain.  She is miserable.

I can NOT get this stuff.  Seriously.  That would cause a whole new batch of problems for me.  There is a lot of hand washing going on in this house.  LOL  Hand washing and complaining (from both of us.)

Monica is out of school for the summer, so the great job hunt is on.  She attacks a different nearby town each day.  It's amazing how many places won't hire you unless you are 18.  I don't remember it being that way, but it's probably a safety issue.  I hope she finds something.  I'll never forget how great it felt to have that freedom, responsibility, and MONEY!  ha ha

OK, If I disappear for a while, it means I have nothing new to say.  I don't want anyone to think that my absence means there is a problem.  I just find myself turning into a whiny-post person, and I don't want to be that person.  I can promise you with 100% certainty that I will post an update the moment I lose the drain.  :)

I Can Drive!

As is typical of me, I do a lot of online research about EVERYTHING.  When it comes to something that directly effects my health, you can multiply that research infinitely.  I even found an amazing online community to join at http://breastcancer.org/ where you can join in message  board type chats, as well as search for answers.

I noticed a lot of folks on there who were driving themselves around, even though they had a JP drain (or multiples) in place.  This piqued my curiosity, so I emailed my handy-dandy PS nurse Terri to ask.  The only restriction on my driving is the pain pills.  What???  I could have been driving for two weeks!  As soon as she answered, I jumped in the car and left.

My poor car has been parked under the neighbor's trees for a while, and was so covered in bird dookie that it was hideous.  The girls and I laughed pretty hard about it and made the car wash my first stop. Due to a very generous donation, my windshield has been replaced (from the deer damage-no more duct tape) and getting it clean felt great.

From there, we hit Sonic's Happy Hour for drinks, and then to WalMart.  It wasn't long before I realized it may have been a bit too soon to run errands on an afternoon in which I had not napped.  Seriously?  The first day in weeks that I don't nap, and I decide to run around driving?  DUH!

I really thought it would be OK, even though I have a standard transmission, since that uses my right arm, and my left arm is the one that doesn't work.  WRONG!  I guess I actually use my left arm quite a bit.  Part of the reason for that is that NOTHING in my car is automatic.  Windows, locks, etc all need to be worked manually.  With a non-working air conditioner, that meant rolling the windows up and down a few times.

Anyway, I drove.  I can drive.  I'll be careful not to overdo it, and to maybe go earlier in the day, so I still have time to nap when I get home.  In other news:  Jaxson only gave up 10cc this morning (after nearly 12 hours) so it's looking like we might have an improvement there, too!  Fingers crossed!

And Here is Another Week

Wow.  Another Monday is here already.  I slept a LOT yesterday.  Recent surgery or not, I slept so much I felt guilty!  I would wake up for an hour or so, think I was done napping, and then BAM, back to sleep for another couple of hours.  I didn't feel as bad as I did on Saturday, but I sure was tired.  The day ended with a visit from coworkers bearing meals.  Yum is an understatement.

This morning, I decided to rest as needed, but NOT sleep the day away.  We'll see how THAT goes.  LOL  Heck, it takes an hour to shower and get dressed, 20 minutes to go to the post office and back, and then it's time for this important internet-type stuff.  :)  By then, the day is half over, so I think I have a solid plan to prevent non-stop sleep.

I've got Jaxson down to double digits, but we still have a way to go  before I can get rid of him.  Yesterday was 53cc.  The day before that was 87, so I'm hoping yesterday wasn't a fluke (because that's a huge drop.)  It has to be under 30cc for two days straight before they can remove it.  I am SO flippin' tired of dealing with it.  Tired to the point that I tear up as I'm trying to shower or get dressed or change clothes.  Of all the things that are horrible about cancer, who would have thought a stupid drain could cause this much grief?

I guess I'll go email my nurse the Jaxson status and see what she says.  Fingers crossed...

The Jaxson Saga and Mother's Day

Wow, no post since Wednesday must mean no news, huh?  That, and I'm keeping weird hours.  I've never known anyone to sleep as much as I have been sleeping lately.  Other than a baby, perhaps.  I'm not complaining, however.  I am learning to adore a good nap or three during the day.

Jaxson seems to finally be slowing down.  94cc on Thursday, and 83cc on Friday.  Keep going that direction, buddy.  I may get rid of you before the week is out, which is actually imperative, since I am to start chemo the following Tuesday, and cannot start chemo until Jaxson is out of the picture.

Today, we're going to have a Mother's Day meal of burgers and dogs on the grill.  Brett and Melissa are coming over and bringing the kids.  I can't WAIT!  It's been weeks since I've seen them.  Even Kaylie is coming, and she NEVER makes it.  I stocked up on bubbles and sidewalk chalk, so we should make it a great day.

Chemo has been Scheduled

So yesterday, I just sat here.  Yup.  That's pretty much what I did.  I let the HVAC guy in to fix our a/c, and then I wrote a check to him.  I changed the channel several times, took medication and logged drain output.  Quite possibly the laziest day I've participated in for a LONG time.  If that's what it takes to get better fast, I'm going to have to heal slowly.  Jeez, what a long day.

I'll avoid running errands that aren't necessary (we'll leave those up to Kevin,) but I'm not going to sit in this chair 24/7, THAT'S for sure.  Today, I think I'll walk up to the post office.  All the way up town, by myself.  (Those who know this town will get the joke.  We're talking 4 blocks.)

I got a call from someone yesterday (I cannot keep track of what nurse is from what office anymore) but she was somehow affiliated with the oncologist.  I am to go in at 10:15 on May 22.  I'll have a meeting with the oncologist and then have my first chemo treatment.  I'm supposed to plan on being there for many hours, especially for the first visit.  Maybe as many as six!

The problem that I see (and it may not be a problem, but I'll be asking) is that I expect Jaxson to still be hanging around then.  I still have not dropped under 100cc in a 24 hour period, and it's got to get under 30.  If you aren't familiar with Jaxson, go to this post and read the last paragraph.  I didn't think to ask yesterday, but I have an email in to my favorite nurse/source of information to see what to do about it.  Maybe Jaxson will just go along for the ride.  LOL  He's always enjoyed a good road trip.

I slept in my own bed last night, and I believe I slept better than I have in three weeks.  Can you believe it's been three weeks?  I may try to make the transition back into there now.  This poor recliner deserves a break.  :)

I Suppose I Should Just Sit Here

I think I overdid things on Saturday, so I spent Sunday recuperating.  I was exhausted, sore, and even had a pretty big chip on my shoulder by the end of the day (I know!  Shocking!)  I was slowly but steadily recovering, and the setback just ticked me right off.

I got up this morning after sleeping a bit longer than usual, and still wasn't great.  What the heck?  Fine, I'll take another easy day.  Mom even offered to take me with them to McD's for breakfast (not that I eat breakfast, especially theirs, but she knows I look for chances to get out of the house.)  I turned her down.

I tried to take my daily nap, but after 4 interruptions, I gave up on that pipe dream.  Maybe tomorrow I'll pull my head out and silence my phone and put a DND sign on the door, huh?  I got up and fixed one of the meals provided by my wonderful coworkers (which was easy and amazingly delicious) and then asked Kevin to take me to the store.  I was relatively sure I felt well enough to go.

Wrong.  I did well 3/4 of the way through the trip, and then started fading fast.  I almost felt feverish.  I'm on antibiotic, so I'm sure I'm not, but I was just "off."  Got settled in for the night and decided that I shall not move for at least 2 days.   I'll read, I'll surf, I'll sleep, and I'll twiddle my thumbs, but I'm going to quit jeopardizing my recovery, which is what I was inadvertently doing.

Oh, and I had also planned to be back to work by now, at least part time.  Yeah right.  Satan drain Jaxson is still putting out over 100cc per day.  It's still gotta get under 30.  I can't drive, I can't work, I can even make it to the damn store with a chauffeur without issues.

If you need me, check this recliner.  I'll be here.  Likely pouting.

The Report from My Oncologist (The Plan)

I'll try to keep from rambling from place to place in this post, but I'm on information overload, so there are no guarantees.

I'm taking part in a clinical trial.  No, this doesn't mean I'm getting un-tested drugs or anything.  I will get the same mix of chemo drugs that the doctor would prescribe anyway, but because of this trial, there is a 50% chance I'll be chosen to get an extra drug that has not typically been used in cases like mine, but might be beneficial. There are slightly over 3200 women, with cancer similar to mine, who will be a part of this trial.   It was purely voluntary on my part.

Some people with breast cancer are HER2-positive.  In that case, they are given Herceptin.  It is to fight this protein. When it comes to your HER2 number, you are a +1, +2, or +3.  +3 means you are HER2 positive.  Otherwise, you are considered HER2 negative.  I am a +2.  Technically, that makes me HER2 negative, but they are doing this trial to see if "HER2-Low" patients (me) might benefit from Herceptin.  Whether or not I get this extra drug is the only variable based on the trial.  Other than that, all other drugs/treatments will be the same.

My chemo will start in late May.  Probably another 3 weeks or so.  My cocktail will be Doxorubicin and Cyclophosphamide.  This will be given every 2 weeks for 4 cycles.  After that I will take Paclitaxel once each week for 12 cycles.  If I am in the part of the trial getting Herceptin, I will receive it during this same 12 week period, plus every 3 weeks for a year.  There is no additional cost to me for this drug, since it is part of a trial.

After all chemo is over, they will talk to me about doing radiation.  That isn't a decision that has been made, but it seems that they are leaning that way.  We'll get through the chemo nonsense first.  Woo Hoo!  A summer vacation for the ages, no?

I can't find that I've explained tissue expanders much on here, so if I have, ignore this part.  When they did the mastectomy, they inserted a tissue expander.  This is basically a special type of breast implant that is deflated.  Because of my original size, they filled it partially while doing the surgery to insert it.  After the final drain is out (more on that later*) I will start visiting the plastic surgeon's office every two weeks for a "fill."  They will add a bit more saline each time.

This is basically stretching out that pectoral muscle in preparation for the permanent implant.  Here is the cool part:  We just keep going with this plan until I am happy with the size.  (Yes, Kevin gets a vote.)  When we decide it is what I want to have forever, then they do reconstruction on the right side to match.  (Take THAT, gravity!)  Because of chemo, we'll schedule the fills around that.  My blood counts will be at their best the day before chemo, so that is the day I'll get a fill.

Wow, I hope this all makes sense.  Please feel free to ask ANY questions you have at all.  I'm still figuring it out, and certainly feel better after a nap.  If I had tried to type this right after getting home, it would have been gibberish.

*Oh, and as far as that second drain?  I've decided to embrace the drain and adopt it as a member of the family.  His name is Jaxson.  He is QUITE productive.  He will be a part of my life until he gets lazy enough to produce under 30cc in a 24 hour period.  This morning, that ambitious little guy gave up 85cc before noon!  Ahhh.  Isn't he precious?  I think I'll draw a face on him and accept him as a permanent part of the family.