Thursday, December 31, 2009

Merry Merry Happy Happy!


A lot has happened in the short time since my last post.  We have celebrated Christmas (a few times!) and been to the doctor 4 times, which is some kind of record considering it is holiday season! 

First, the medical news.....

I met with my oncologist on December 21st to go over my pathology report from surgery.  To say that I was nervous is an understatement.  Luckily, she had good news for me.  When they removed the cancer, my tumor had dissolved to just at 1cm.  That is pretty major considering that it was estimated at around 7cm when I was diagnosed.  Of 14 lymph nodes that were removed, they found cancer in only 2 and it was a small amount.  It is bad to have it in your lymph nodes, but good that they only found it in 2.  I am a lucky, lucky girl that the chemo worked so well for me.  It is less common than you might think for chemo to be so effective.  As a result of the pathology, my "official" diagnosis is now stage IIa; much better than clinical stage III.  The best news is that I have NO CANCER in my body at this time.  I also have a low rate of recurrence based on this diagnosis, but I am not sure how accurate that is considering my BRCA+ status.  Scott thought I should have been more celebratory about this news (and I am happy about it!), but I was still in a slightly crappy mood because I wanted to hear that there was no tumor left at all when they picked through my old boob.  Also, I am still recovering from surgery and my mind is probably on the present current state of pain and lack of mobility in my arms. 

On the 23rd, I returned to the plastic surgeon for another fill.  His nurse also removed my drains (read: YANKED them from my body; there were four and they had to be removed ONE AT A TIME).  YIKES.  Someone should have told me that they were going to replace my boobs with TORTURE DEVICES!  Another embarrassing trip to the plastic surgeon as for the second time in two visits, I had to be patted down with wet towels so that I didn't barf or pass out.  And this time, I made sure that I was heavily medicated.  Scott said that I made some kind of involuntary yelping noise at some point.  He was worried that someone in the next room might hear and it would freak them out, so I hope it was someone that was getting some "voluntary" work done.  Ha, ha.  So, each fill so far has been 60ccs in each side, which feels like a freaking ocean of liquid shortly after he injects it in there.  In reality, it is a small amount.  I am going to go ahead and plan for about 48 hours of around the clock medication every time.  I hope that as my surgery wounds heal, it will be easier to tolerate the fills.  This past one was pretty bad, too.  I could time the next pill by my level of pain and had to take muscle relaxers and pain pills for two days.  Not only does the fill cause muscle spasms in my chest, it also presses on my chest and makes it difficult to breathe until things get stretched out and accustomed to the new size.  My back also hurts because everything is pulling and making me hunch forward.  Seriously, for the pain, you would think that I was carrying around watermelons, but sadly, I just have some little bumps.  I am doing the exercises that the physical therapist showed me in the hospital as well as a few I have picked up from the plastic surgeon and surgeon.  My plastic surgeon was kind enough to give me the week off, but it is only because HE is on vacation!  I'll take it!!  My next appointment is on Tuesday.  Heads up...if I talk to you next Tuesday or Wednesday, we might have the same conversation at a later date because I probably won't remember it!  I had some hazy moments after the last one.  The plan is for weekly fills (torture) until I am happy with the size and then one or two extras to stretch beyond that so that my future new boobs will be soft and bouncy.  Yay!  Those things had better be a freaking masterpiece for all this pain!

On the 28th, I met with the radiation oncologist for the first time.  I have heard good things about him and both Scott and I really liked him.  He took the time to go over my (brief) breast cancer history and explained why I need radiation and what he is going to do, how it will feel, etc.  He won't be able to start radiation until after I am finished with the dreaded expansion process, so he is estimating around the second week in February.  I will go back to see him on February 4th and he will make all of his measurements then.  I will get it from three different directions (insert joke here) and have 33 treatments.  I'll have to go every weekday and he said that I will only be there for about 10 or 15 minutes.  We haven't decided how to plan this around Annabel since I can't really take her with me.  We have discussed finding a mother's morning out so that she can be social with other kids, so that is an option for a part of the time.  The doctor also said that we can schedule for first thing in the morning or last thing in the afternoon so that Scott can just adjust his work schedule during the time that I receive treatments.  I was in a crappy mood when we left his office, too.  Scott pointed out that I shouldn't have been surprised that radiation would be required since we were scheduled to see the radiation oncologist (DURR), but I guess I thought there was a chance that it would be a minimal amount or something.  I don't look forward to going over there every day to get zapped.  He also mentioned that because of the type of cancer I have and the grade and the way it grew so fast, he will be radiating my skin in the end and his goal will be to burn the crap out of it.  (Not his words, but that was the sentiment.)  He said it will be like a really bad sunburn in the end.  Because of the potential and imminent danger to the effected areas, I won't be able to have my exchange surgery for about 6 months after radiation ends.  This also coincides with the conclusion of my clinical trial, so now I have two reasons for not being able to get these rocks in my chest switched out for something more booblike, fake as they may be. 

On the 29th, which was also SCOTT'S 40TH BIRTHDAY!!!, I went for a follow up with my surgeon.  She is very pleased with the way my chest looks post-surgery and assures me that I will be very happy with the end result.  She says that I am healing well, but gave me a hard time because I don't have much mobility in my right arm yet.  I am working on it!  I promise!  I have fluid build-up in my chest right now because they took the drains out, but she said that it wasn't an extraordinary amount and she expects that it will absorb into my system (plastic surgeon also mentioned that this would happen when he took out the drains).  If my plastic surgeon thinks there is too much fluid, he will "aspirate" it when I see him next week.  I am pretty sure the definition of aspirate is:  to PAINFULLY remove bodily fluid with a BIG F-ING NEEDLE.  I think she is happy to leave the aspirating to my plastic surgeon!  As I was getting dressed, she knocked on the door and peeped in to mention that the fluid MAY build up and ooze out on its own.  I have been freaking out since then thinking that my Frankenboobies are going to bust open and ooze all over the place. 

So, yeah, Scott turned 40 two days ago!  We are planning a dinner with friends at Kanpai tomorrow night to celebrate.  Nothing like the big bash he deserves, but we have had a lot going on lately.  The man really deserves an award.  As unpleasant as this has been for me, he has been so good to take over virtually everything so that all I have to do is get better.  And he does it will little complaint.  He has exhibited an ENORMOUS amount of patience and has been incredibly intuitive about how I'm feeling.  He has not only had to deal with taking care of me when I was sick with chemo, but after surgery, he doctored me up and changed my bandages and stripped my drains every day.  When I couldn't look, but he reassured me that it wasn't that bad.  He makes me forget how crappy this is and makes sure that I get at least one GOOD laugh every day.  I could go on.....nobody signs up for this crap voluntarily and that whole "for better or for worse" thing has all new meaning now.  (Although, I don't recall whether that was part of our vows!)  I just hope that we motor through the rest of this "cancer journey" and have an uneventful, long, happy life together with our daughter and extended family.  Uneventful sounds so nice right now!  If you had asked me 10 years ago (or 5!), "uneventful" would have had a negative connotation to me.  Amazing how things change!  Despite all of this "adversity", I feel like a LUCKY, LUCKY girl to be Scott's wife and the mother of his child. 

I mentioned earlier in the post that I had a hard time looking at my chest after surgery.  Really, it is not that bad.  I will try my best to describe what it looks like....When I went to the plastic surgeon for my pre-op appointment, he "marked" me for surgery.  Basically, I had upside down Vs over my nipples and he traced the bottom of my boob underneath.  This could be another story altogether because I was sort of sad that they were "marked for death" before I got a last look at them, but the purple permanent marker was really messy and when I sat down braless, I ended up getting marker smudges ON MY STOMACH because my old boobs were so freaking saggy.  It was a reminder that if this whole cancer thing hadn't happened, I would have probably complained about their post-pregnancy/breastfeeding appearance.  I thought it would be more painful to say goodbye, but those old girls had done their job.  They tried to kill me and it was time for them to GO!  And honestly, this is my reality.  There is no sense in being nostalgic at this point.  Their removal was imminent.  I was NOT going to keep them after all of this; I would have been too paranoid.  At least one was going to have to go and because of the gene, it was better to go ahead and send them both on their way.
Anyway, because of the marks (and the internet), I had an idea of what I would look like after surgery.  Where my old nipples started, there is a vertical incision and it travels down to where the bottom (underside) of where my boobs were.  And then there are incisions along those lines, ending towards my armpit.  Because the cancer was on my right side, I had a modified radical mastectomy on that side and it definitely got more "work".  I had lymph nodes removed and the area on my side under my armpit has an extra crease in it.  I don't know how else to describe it, but that was actually the part that disturbed me the most when I finally looked, just because I can envision how the rest will end up, but that part just doesn't look right.  My surgeon assured me that it will be fixed during my exchange surgery.  My incisions are healing well and I really think that the scars won't be too bad once the new ladies are in place.  In a week or two, I will be able to start using some Mederma scar cream or something to help with that.  I also still have some numb spots on my chest and on my sides from surgery.  That feels weird.  I am really weirded out by my right side because it feels strange against the inside of my arm and I have less mobility on the right.  I also have to worry about lymphadema, so I am sort of paranoid about using my arm.  I am getting better about it, though.  I don't want to limit myself because of fear and if I don't start using it, it is going to be harder to get it back where it needs to be.

As far as the tissue expanders (torture devices) go, the only thing boob-like about them is where they sit on my chest.  They are hard and don't feel like boobs.  They are also sort of like stuck to my chest and not boob-shaped.  I think as they are filled up, they will just sort of spread out in the boobal (this should be a real word; I think I've had to use it twice now!) area and will be bumps, but not really where they should be or projected (I think that is the word they use) like boobs should be.  The way I think they will look is just like (big) bumps, without a real top or bottom.  But I might be wrong.  I don't like them.  I am not happy that I will be sporting them until the fall.  But it is part of the process and I am glad that I have options.  I think you get the idea that I won't suffer in silence, but I don't want my blog to turn into a big whine!  As far as how they look under clothes, I am not really concerned at this point.  They are pretty small at the moment.  I don't usually wear tight shirts and I am not young and I am also a mom.  I am guessing that not too many people are staring at my chest anymore; if you are, you're durty because I'm a mom!  Ha, ha.  They are nonbooblike enough that I offered to show them to my horrified brother before I realized how WRONG that was.  Shudder!  (OK, really, it is not like they are MY boobs and there are no nipples, so it is really just my chest, they are notboobs.)  I think (hope) that their nonbooblike appearance will go under the radar.  Like the hair, I have gotten to a point where I just really don't care.  I am rocking what I'm working with right now.  I'm "under construction", so I'm not going to fret about it because it is temporary.  Also, I don't have to wear a bra and I won't have to as long as I have these tissue expanders in.  They don't move like boobs.  That part is sort of liberating.  I have just been layering and wearing tank tops under my shirts.  I guess I don't even have to do that, but I mostly did it when I had boobs anyway.  One of my concerns about this was that when my boobs were gone, my stomach would look bigger and jigglier than it already is.  All I can say about that is that I am glad it's winter!  It stands to reason.  Somehow, all of this has made me sort of less self-conscious about the way I look.  I know it sounds crazy, but I really don't have any control over the fact that I have a tiny bit of hair and weird bumps on my chest.  I will say that I have happily become accustomed to not washing my hair and not wearing a bra. 

On Tuesday, I had to stop by the bank to cash a check.  Apparently, we (SC) are the only place that has a sign on the bank doors of all banks that you are not allowed to wear hats or sunglasses in the bank.  I guess that is so that they can identify you if you rob the bank (?).  Anyway, I was wearing a hat and I hesitated about 3 times after I walked through the door.  Should I take it off?  Should I ignore the sign?  Well, I guess I must have made the teller nervous because she kindly asked me to take my hat off.  Then I could tell that she felt bad about it and said something about it was fine since I had a medical reason.  I felt bad for her and then we started talking and it turns out that her daughter, who is my age, found out that she had breast cancer at the same time that she found out that she was pregnant.  Her daughter had 4 rounds of chemo while she was pregnant and she is doing well now and her baby is fine.  It's pretty amazing what your body can handle, as fragile as life is....Anyway, I took my hat off and I just didn't put it back on.  I went on a solo mission to the mall, topless!  I was staring at everyone that was walking towards me to see if they were staring at my head, but I think the only reason they were was because I was staring at them.  I'd say it was not much different than walking around with a bandana or a hat.  I have cancer and it is not that easy to hide the absence of hair unless you are wearing a (good) wig and I am just not about wigs.  It is nice to have some hair, though!  I will still wear my hats because it's cold outside, but now I am going to take my hat off if I get hot. 

We had an amazing Christmas!  It was awesome to see Annabel get excited about Santa and presents and spending time with her family.  We went to Knoxville on Wednesday afternoon and had the usual amazing Christmas Eve spectacular at my Dad's house.  It was especially great because I was worried that we wouldn't be able to make it because of surgery.  We went to Jeff's on Christmas morning and then came home.  Santa visited Annabel on Christmas night, so she had more gifts on Saturday morning, including a fish that she and Daddy named Gertie.  She feeds "Guwt" three pellets before bed and after breakfast, but I think that her favorite thing is Play Doh.  She has somehow accumulated about 20 cans between her birthday and Christmas and she loves to shred it to pieces, so it is everywhere!  We only let her open 3 cans at a time and some of it has already dried up, so we might have a manageable amount of it by springtime.  We spent Christmas with the Halls on Saturday afternoon and had a wonderful Christmas dinner.  It was a GREAT holiday.  Scott and I got a Wii from my Dad and Wii Fit Plus from Kim, so wii have been wiiing at night after our wii one goes to bed.  It is so much fun!  And hilarious to watch!  Scott played a game on the Wii Fit the other night where you have to "fly" to targets for points and I thought I was going to pee my pants watching him flap his wings. 

Well, I didn't mean to go on and on, but I guess I was due to write a long post to attempt to get caught up.  I hope everyone had a very Merry Christmas!  And wishing you a Happy New Year!   We are planning a low-key movie night tonight....New Year's Eve is for amateurs!  I am guessing that Annabel might wear herself out at a normal 2 year old's bedtime tonight; she is zipping around and around the dining room table right now yelling "chase me, chase me" to Scott.  Oh, and she's wearing only a diaper.  Refuses to get dressed today and I am not in the mood to argue since we aren't planning to leave the house, anyway.  Aaaahhhhhh....keep going, baby, keep going. 


Friday, December 18, 2009

Today I Hate Boobies!

OUCH! 
So, I explained the drains and the pain ball on my last post.  Today, I went to see the plastic surgeon for a follow-up visit.  He says that everything looks great.  I felt pretty good when I woke up this morning, so I was happy to hear that from him......UNTIL.....
The first thing that he did was take the tiny tubes from the pain pump out.  It didn't hurt, but bled a little on the right side.  I did start to get a little woozy.  THEN, he proceeded to strip my drains.  They are supposed to be stripped at least once a day, but Scott and I have been too gentle with them and though we could get the fluid moving, we never properly emptied the tubes.  Because it HURTS.  Real bad.  He pinched the tube at the top near the incision with both hands and ran it all the way to the bulb with the other hand.  It created a suction and felt like someone had lit a fire under my skin.  I have four drains, so he had to do it four times.  I think I am usually a good patient, but I almost passed out.  I asked for wet paper towels and water to drink.  I told Scott that if he had drained them like that, I probably would have involuntarily punched him in the face.  If that was not bad enough, he decided to fill my expanders some today.  This involves a LARGE needle and a LARGE syringe on each side.  I am definitely a wimp.  By the time he got around to that, Scott was rubbing my head while the office manager was dabbing wet paper towels on my head and neck.  The nurse was not amused in the least.  It was embarrassing!   I took my pain medicine and a muscle relaxer close to the same time, so I am drifting in and out this afternoon.  My chest feels really tight and sore now.  I have to go back on Wednesday for more and he said he might be able to take some drains out then.  I will definitely dope myself up really good before I go!
Annabel is still with Scott's parents.  I miss her so much, but I am still afraid for her to come home.  I am just not in the best shape and I think it will be really hard for both of us if I can't hold her or snuggle or anything.  I am hoping that we can get her tomorrow.  The drain situation is not going to get any better, but I am sure I'll be less sore.  The weather here is nasty today.  It's cold and rainy.  I am relaxing in my chair.  I slept in bed last night and was very comfortable.

Wednesday, December 16, 2009

Recovery

I am home now, resting near the Christmas tree.  Scott is taking excellent care of me!  We both miss Annabel terribly, but I know that she is having a great time with Scott's parents and I think it would be hard for her to be here.  I have 4 drains in my chest that I wear on my waist with the "pain ball" that is also attached to send Novocaine (or something) to my incisions.  The pain ball is in a fanny pack and the drains have tabs that thread through the belt on the fanny pack.  It is unsightly, to say the least.  Scott has to empty the drains twice a day and change my bandages once a day.  I am glad that he doesn't get woozy very easily because I almost passed out when he was changing my bandages.  It didn't really hurt; I mostly felt pressure, but I got the sweats and was glad to sit in my chair when he was finished.  The drains look like hand grenades and when Scott empties them, he has to record the amount of "fluid" that comes out.  I think they are looking pretty good, so hopefully I will be able to have some removed when I see my plastic surgeon on Friday.  I have looked at my chest and it is sort of shocking, but not much different than I expected based on pictures I've seen.  I am definitely under construction!  Lots of stitches and it is lumpy and bumpy.  My surgeon told me to keep in mind that I will be pleased with the final results.  I am sort of surprised that I am not upset about it, but as I have said before, the anticipation is usually worse than the reality. 
When I was at the hospital, a physical therapist came by to teach me some exercises, so I have been doing those as instructed.  This morning, I walked from the back door to the mailbox and back and felt just fine with that.  Last night I was able to sleep sitting up in bed, but I think tonight I will stick to the chair in the den.  I was really stiff and in pain when I woke up in bed and it is too hard to move around in there.  I have been dozing on and off since I've been home.  I'm hoping that I can stay awake to watch a movie with Scott tonight. 
Next week, I'll meet with my oncologist to go over the pathology report from surgery.  She will tell me the results and we will learn what the next step is in my treatment.  My plastic surgeon said that I might even be able to go to Knoxville for Christmas, so I am really looking forward to that.

Tuesday, December 15, 2009

Bald & Boobless!

Bald and boobless....well, this is technically not true because I have a little bit of hair and a little bit of boobs! 
Surgery is over and I am glad to get past this hurdle.  My surgeon said that it went well.  I am in pain, but that is to be expected.  The nurses here at the hospital have been great and they keep me comfortable.  Scott spent the night last night and Kim has been here, too.  I might go home today.  I think at this point, they are leaving it up to me, but I won't get the IV pain medicine if I go.  They have been alternating IV and pills.  I HATE having an IV, so I will probably choose to go home today and recuperate there.  I am nervous about changing the dressings and emptying the drains, but that is Scott's job, anyway.  If he feels comfortable with it, we'll go home later today.  I haven't seen my chest yet, but my surgeon reminded me this morning that I will be really happy with the results later on.  I am a little nervous about it, but again, so glad to get it over with.  Pathology won't be back for a few days and I'll need to go meet with my oncologist to go over that.  I will learn then what the next step in my treatment will be.  I have thought all along that I would have to have radiation, but she told me a few weeks ago that it might not be necessary.  I have some anxiety about the pathology report.  I know already how lucky I am that the chemo did its job, but we will see if it got rid of everything. 
Just wanted to put up a short post.  I am happy to answer any questions about things that I haven't covered....surgery, chemo or otherwise. 
I am including this picture even though it's awful.  Just want you all to know that I am comfortable!  As a matter of fact, I am enjoying some Dunkin Donuts coffee at the moment.