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.

Saturday, November 21, 2009

EAT CRAYONS.....


SHIT RAINBOWS!!!
I am sure that this is Suki's way of reminding me to always see the beauty in life.  I don't think Annabel agrees.  She is just pissed that she keeps losing crayons. 

Wednesday, November 18, 2009

RING-A-LING!!!!


Today was my LAST treatment!  I am really glad to have it behind me, but hunkered down for the next few days to get over it.  So...it isn't really over YET.  But at least I don't have to sit there and get poisoned anymore.  (Well....until more Avastin treatments, but that is another story altogether!). 

The morning started off well, despite the fact that I didn't get a very good night's sleep.  We woke up in time for me to get ready without rushing too much.  I even got to take a bath!  Scott's parents were here before 8:30 to spend the day with Annabel.  Scott and I had to drop my car off at Goodyear for 2 new tires, an oil change and an alignment (ugh!).  He stopped for coffee and we still made it there on time!  Rare. 

When we arrived, we didn't have to wait too long for me to get poked and have my blood drawn for lab work.  We then visited with the clinical trial nurse to discuss my surgery and what needs to happen to get ready.  She is shooting for the week of December 14th, but we don't have a date yet because my breast surgeon and plastic surgeon have to find a time that they are both available.  Before surgery, I will have an echocardiogram, a mammogram, a consult with both surgeons separately, lab work and review with my oncologist and a CAT scan on my neck.  The CAT scan is not for the surgery; I have mentioned a few times that I have had a sore throat since my first treatment.  It hurts in the same spot and the pain comes and goes, but never goes away.  I went to an ENT in June or July and he stuck a HOSE up my NOSE and said it looked slightly irritated.  He prescribed an acid reducer that I take twice daily for "silent reflux".  Shhhhh, don't tell anyone.  I am a little surprised that she didn't recommend that I go back to the ENT again, but she said she'd do the CAT scan to see if anything is going on.  She said that is abnormal, but she is not too concerned.  I am glad I don't have to go to the ENT because of the hose/nose deal, but they also pissed me off over a prescription issue and I would have had to bitch about that and request that she refer me to another ENT group/doctor.  I am not worried about any of this.  My oncologist initially said I would have an MRI before surgery, but after consulting the clinical trial nurse, they decided that a mammogram would be more appropriate.  I am sort of disappointed because they can see more with an MRI to tell me how much my tumor has shrunk, but that is something they won't know for sure until surgery time anyway.

Well, I meant to publish this post last week after my treatment, but I wasn't quite finished when I saved it as a draft.  Today is Wednesday and I am feeling better every day.  My biggest complaint these days is that when I THINK about certain things, I feel very nauseated.  And there are lots of things that make me gag just by thinking about them....the red hand soap that Scott bought for the bathroom grosses me out (looks like chemo medicine) and now even the smell of it makes me gag.  I am throwing it away next time I'm in the bathroom since I've been complaining about it for a few weeks now.  The thought of going to the doctor makes me feel sick.....my first few chemos, (I am trying not to GAG right now typing it, because this is a MAJOR trigger) I asked Scott to pick up lunch from Pita House, which used to be a favorite restaurant.  Obviously I will never eat that again!  I was told that this would happen, but I didn't believe it until it started happening.  I am sure there is some kind of meditation or something that can help and I'll be looking into it when I feel a little better.  Until then, I am still taking some anti-nausea medication as needed.  So far, I have not barfed, but I feel like I spend a lot of time trying not to!  My appetite is not great, but I will eat food if it is in front of me and usually don't have any problems. 

Kim left to go back to Knoxville early this morning.  She was a great help as always.  I miss her when she goes!  I think that she and Annabel had an especially fun time together this visit.  Annabel is more communicative every day and is putting her thoughts together really well.  Kim took her to the zoo on Monday and Annabel made it VERY clear that Kim forgot to get crackers to feed the goats.  She was not happy about it, to say the least!  She likes to voice her opinion about most things and our main stuggle lately has been getting dressed or changing clothes.  Another big milestone....Annabel used the potty for the first time on Monday!  She hasn't been interested in going again since, but once is a good start.  She got some M&Ms for that and I plan to use some kind of sticker chart if I can get her interested again.  I think she is a little young yet, but I want to be prepared in case she shows interest. 

My surgery is set for December 14th.  I have mixed feelings about it.  I think I have been sort of brave about it up until this point because there was no date, but I have a lot of anxiety about it.  I am ready to move onto and past the next step of my treatment, but I don't like the idea of losing my boobs even though they are no good anymore.  Chemo was traumatic and losing my hair was awful, but at least it is going to grow back.  The boobs....not so much.  I am also not looking forward to recovering over the holidays.  I am grateful that we can celebrate Annabel's 2nd birthday before surgery and I hope I can get a tree up and shopping mostly finished before the big day.  I am not sure about the recovery time, but I will meet with my surgeon and plastic surgeon both before surgery.  I hope they can give me some realistic expectations about recovery and pain and all that fun mess.  I am sure that I have mentioned it before, but I will explain my understanding of the procedure again.  I am having a bi-lateral mastectomy, so they are removing both breasts.  My surgeon will go in first and hack them off and then the plastic surgeon will follow with tissue expanders.  Because I have to have radiation, I am not a candidate for immediate reconstruction, but the tissue expanders are sort of like temporary boobs.  I think of them sort of as the spacers that you get before you get braces, but I will be sporting them for several months.  The tissue expanders have some sort of port in them and the plastic surgeon will fill them with something (?) over the first two weeks after my surgery.  I am sure I will learn more about this during my doctor visits. 

No hair yet!  I hope to have some brewing by surgery time.  I still have a head full of fuzz, but it seems to be coming out fast.  I have threatened to shave my head so that when my hair grows, it will be even, but I am attached to the fuzz for some crazy reason.  I guess because it's all I have!  My eyebrows and eyelashes are very thin.  I have heard that they will probably fall out completely before they start growing back in.  I have major eyebrow issues!  They are thin, but crazy like an old man.  I have some faux eyebrow powder and a pencil, but I haven't gotten it out yet.  I am just trying to be gentle with them so that I can keep what I have.  As bad as they look, I think it will look pretty bad to have none.  I might practice with my fake eyebrows tomorrow.

Not much else to report.  I am looking forward to the holidays despite the sense of impending doom over surgery.  Scott and I are planning to go and see the Brian Setzer Orchestra's Christmas show at the beginning of December.  We went a few years ago and it really put me in the holiday mood!  I have also been listening to Christmas music on Sirius.  I can't wait to celebrate with Annabel this year.  I think she will be excited about decorations and Santa and of course, presents!  I will keep you posted.

Monday, November 9, 2009

Update


WOW!  Has it really been that long since my last post???  I keep meaning to update, but I have put it off for a long time I guess. 

Let's see.....since my last post, I have had a treatment.  As I have mentioned before, my oncologist does a rudimentary measurement of my tumor when I see her before chemo.  I was dreading this past treatment and got a great pick-me-up when she went to measure and couldn't find it!  This is excellent news of course, but also doesn't mean that it is gone.  Again, rudimentary measurement.  We will know more the next time I have scans and then for sure when I have my surgery.  But it is very encouraging to know that the chemo is doing its job.  My recovery was pretty uneventful after my last treatment, which is also good.  Annabel spent a few nights with Scott's parents and Scott actually ended up working from home both Thursday (treatment day) and Friday.  Annabel had a great time with her grandparents and I enjoyed having Scott here to keep me company.  Kim came to visit on Saturday night and stayed until early Wednesday morning when she left to go back to work.  I love having her here to help with Annabel and keep me company while I recover.  She usually makes me get out of the house and doesn't put up with my crankiness or take it personally.  I am not the best company all the time!

The news interview aired on the Tuesday after my last treatment.  I am glad that I did it and I think it turned out ok, thanks to editing I'm sure!  Here is a link:
http://www.foxcarolina.com/video/21438004/index.html

I have become somewhat of a germaphobe lately.  Rightfully so if you want to ask me!  I don't want any part of the crud that is going around.  It would set me back and I am all about full steam ahead right now.  I am ready to be finished with chemo and getting sick is not part of the plan.  I haven't been out of the house too much and when I do leave, I am armed with hand sanitizer and wipes.  Since I got sick after #5, I have been really nervous about getting sick again.  I have gotten a flu shot, but I know that it doesn't prevent all kinds of flu.  I am just trying to stay away from germs since I don't have much longer now. 

The weather has been nice!  I love fall.  We have had some cozy days of chilly weather, but are still getting the occasional 70 degree day.  Annabel and I went to the zoo on Friday and she and Scott spent a lot of time outside this weekend playing on her playset and coloring the driveway and porch with sidewalk chalk.  I meant to take a picture of the house last week because our big crape myrtle looked beautiful with red-orange leaves, but they have mostly fallen now.  Oh, well. 

Annabel is talking up a storm.  She is getting good at putting words together and has been pretty conversational lately.  Every day is something new!  She is also VERY resistant to changing her clothes.  I have tried giving her two sets of clothes to choose from.  She will choose, but then has a fit when I dress her.  I have even tried to let her pick her own clothes, but that usually ends in disaster as well.  I am sure it's just a phase, but it is exhausting to have the same fight twice a day (jammies too!).  Right now, she is wearing a busy green calico-y pajama top and some black Halloween leggings with different prints.  We aren't going anywhere or else she would have on the matching shirt.  Or pajama pants!  Last week, we went to run errands and for whatever reason, she would only wear one sock.  As frustrating as it is, I still think it's pretty funny.  Before too long, she'll be able to tell me why.  On Friday, she will be 23 months old already.  She's almost 2!  I can't believe it.

Only a few more days until my LAST chemo!!!  I am not looking forward to the treatment itself, but I will be glad to have this phase of my cancer "journey" behind me.  I know it will take a long time to get back to normal, but at least I won't get the chemo beat-down every 3 weeks.  I feel icky whenever I think about even going to the doctor and the way it smells.  Scott got some red liquid hand soap for the bathroom and every time I look at it, it makes me want to gag!  I think I am having that association thing.  I am definitely going to have to take some anti-anxiety before my treatment on Thursday!  I look forward to hearing again that my tumor is disappearing.  I will also find out what scans and tests and doctor visits are required before my surgery and hopefully, I will have a surgery date.  I am nervous about that because there is so much going on in December....Annabel's 2nd birthday, Christmas and Scott's 40th birthday.  I don't want to miss out on anything, but I know I have to get it over with.  And at least if I have a date, I can start planning.  And I guess I have to do all of my Christmas shopping too! 

That is what's going on around here.  Maybe it won't take me so long to post again next time! 

Thursday, October 15, 2009

Football Time in Tennessee!


Last weekend, we went to Knoxville for a visit and for the TN/GA game.  Go Vols!  Ok, as if I care so much about football, but I do get caught up in the spirit of the game.  Especially this rivalry.  Scott is a Georgia fan.  We packed up the car and left later than intended (as usual!).  This was our first trip using the portable DVD player in the back for Annabel.  It did not go so well.  We made it about 45 minutes out of town before she started barfing.  Pit stop at Target for some Febreze and snacks and then back on the road.  We had just gotten out of the mountains when she barfed AGAIN and then immediately fell asleep.  Scott cleaned her up and we kept driving, in the rain.  We couldn't even roll the windows down!  It was foul, but we laughed a lot.  It turns out that Annabel was just carsick from watching her DVD, so luckily she was just fine the rest of the weekend.

Saturday was a busy day.  I knew it wasn't a good idea to go to the football game, but I was still able to socialize, which was great.  I took Scott downtown to meet up with Shannon and Lillia and crew, so I got to visit a little at the brewery.  After I dropped him off, I met my friend Lisa and we got to spend some time together.  I was pretty worn out after that, so I went back to my dad's and crashed on the sofa for a while.  Kim picked Scott up from the game on her way home from work and we all ate pizza for dinner.  I really wanted to see my friends Paige and James, so we went to a party on Saturday night and caught up with them, FINALLY.  It has been a long time since we've seen each other, but because we have a mutual friend in our neighbor Shannon and since James and my dad work together, we just picked things right up.  It was great to see them and we also got to have brunch together on Sunday morning.  I was really happy to be able to have such a social weekend.  Really, I think that is the most socializing I've done since before Annabel was born!  She is finally old enough that we can leave her with family and she is very content.  It was a great trip, another great diversion and the drive home was nice.  The leaves are starting to change in the mountains, so it made up for the drive there.

Last week, the counselor from the Cancer Society called me to see if I'd be interested in speaking with Fox Carolina about breast cancer because they were looking for someone to interview who is currently being treated.  I agreed to do it and the news reporter called me early this week to set up a time to come over.  She was here this morning interviewing me for their breast cancer story that is airing at the end of the month.  I am nervous!  I hope I didn't look or sound like a dork.  I am sure that I did and will not enjoy watching it, but hopefully they can do some editing and make me look like slightly less of a dork.  I don't know....I have a hard time lately finishing a train of thought, so I am interested to see how it turns out.  I'll keep everyone posted about when it's going to be on.  She interviewed me outside on the front porch and they also filmed a little bit inside the house.  Scott did some good speed cleaning last night, so I hope the dirty parts don't show up and we look spiffy.  I get a goat voice when I am nervous and I told the reporter.  She said that she didn't hear it after she took my mic off.  I just hope that I help someone or was able to thank the people that help me.  That was sort of my point in doing it.  We'll see!

Another thing that I haven't mentioned here yet is that Kim got the results back from her genetic test.  Unfortunately, the results were positive for the BRCA1 gene.  She recently had her mammogram and ultrasound and also a breast biopsy; there was no cancer, which is a GREAT thing.  Because she has such an increased risk to get breast cancer, she is opting to have a prophylactic mastectomy sometime soon.  Specifically, she is looking into having the DIEP surgery.  This is where they take tummy fat and make new boobs, so she gets a free tummy tuck, too.  This surgery is relatively new I think and there are not many surgeons who do it.  She is planning to meet with a surgeon in Milwaukee and if it is a go, she will have the surgery there and recover with our family in Wisconsin.  I hate that she tested positive, but I am glad that she is taking a proactive approach.  I don't want her to ever have to have cancer, so anything she can do to prevent it is a great thing.  It is not uncommon for women in her situation to have a prophylactic mastectomy.  As a matter of fact, we are going to a luncheon in a few weeks and the speaker chose this route after helping her sister through breast cancer, so it is a similar situation.  I feel bad.  Like this is Kim's big prize for helping me through this.  She seems to be taking it really well. 

We have sort of a busy weekend planned.  We're taking Annabel to Boo in the Zoo and having dinner with Mario and Shannon.  We're also planning to go and look at some campers.  I keep looking online, but I am sure that when I see them in person, they are going to look much tinier than they do in pictures!  We hope to get a camper sometime next spring so that we can enjoy some family vacations and road trips when I am feeling better.  I've been looking at lightweight, hybrid travel trailers.  We need something that we can pull behind the Pathfinder, so we'll see where our search takes us.  I am VERY excited about it. 

I want to thank everyone again for all of the support and encouragement!  It really helps me.  I know that I have been bad lately with correspondence, but it isn't because I don't think of it.  It is sometimes hard to find a quiet moment. 

Feeling alright with one week left until my next treatment.  My throat has been hurting again and this week, I have had pain in my neck/shoulder where my port is.  I am thinking that I possibly slept on it funny this weekend, but paranoia strikes and I worry that there is something wrong with my port again.  I am generally lethargic and get worn out really easily.  I don't feel like I'm pushing myself enough to do any walking or anything, but I also just want to get through this chemo thing.  I have not been eating well lately.  I don't have a very good appetite.  I'll eat if food is in front of me, but I am not very motivated to cook or shop and have an especially hard time deciding what to eat.  I am also drinking Instant Breakfast to make sure that I get vitamins.  I tried Ensure, but it was awful.  It is not my preferred method of dieting, but I have lost some weight, which did not seem to please my doctor.  Luckily, I have clothes in the next size down and they also happen to mostly be winter clothes.  I know that the fatigue and side effects from chemo are cumulative, so the fact that I am easily tired and not feeling well shouldn't be surprising, but it is no fun.  Four more weeks until my last treatment.  The countdown is on!  It is hard to believe.  I hope I get the most bang for my buck here and have mild side effects with great tumor shrinkage.  I was really hoping that the tumor would be GONE by the end of chemo, but it was still 3cm at the last measurement.  That is good because it continues to shrink, but it is probably much to hope that it disappears completely.  In any case, whatever is left will be gone with surgery.  Both my oncologist and the counselor at the Cancer Society mentioned an Oncology Rehab program, which includes exercise and nutrition help.  Apparently, I will do this after I am finished with radiation.  I am looking forward to feeling better, for sure!


Thursday, October 8, 2009

What To Do???



This is Annabel going, going, gone!  This morning, Scott's parents came up to visit.  I went on a solo mission to Target for supplies and then met Scott for lunch.  Emily wanted Annabel to spend the night, but we thought this might not be a good idea since we're going to Knoxville tomorrow and it would mean an extra 45 minutes in the car for her.  But then we changed our minds!  Annabel loves to go to Mimi's and by the time I got home for lunch, she had packed all of her toys.  There are no sad goodbyes from her!  She was ready to go when I walked in the door! 

I am not used to being by myself and I have already had alone time at Target today.  I don't even know what to do with myself, so I just plopped in the chair in front of the tv and here I sit, trying to decide what to do while the day wastes away!  I might go to a movie.  I might play with the Play Doh I got for Annabel at Target.  I might go sit on the porch and watch traffic and enjoy the weather.  But I might sit here in this chair with the windows open and take a nap.  Or not.  You would never know that I lived alone for 10 years! 

Yesterday, Annabel and I spent our first day alone together in a few weeks.  It was great and we took it easy.  She is amazing and also happens to be great company.  Her new thing is eating cereal with milk.  Kim fed her some Cheerios with milk one day and she is all over it.  She does a great job not making a mess.  I can't believe what a big girl she is already!  We sat on the back porch yesterday afternoon and had a snack and waited for Scott to come home.  She decided that she needed shoes, so she went in the house and came back with her tennis shoes.  Then she told me that I needed shoes, too.  So she went back in the house and came out with a pair of sneakers that I rarely wear.  I have no idea where she found them, but she was really proud of herself.  And that made me happy!  She is very particular about things sometimes.  She likes for things to be in (her) order and she will throw a fit over shoes.  She loves loves loves to pick out her shoes as well as ours.  She picked out her shoes and socks today.  I guess it is funky fresh to mix her tie-dye shirt and capris with striped socks and pink striped tennis shoes.  Or something.  Annabel's other true love at the moment is Max and Ruby, her favorite TV show.  She has a little dance that she does when she hears the music.  She goes nuts for it!  I got her a Max and Ruby DVD at Target today.  We have episodes on DVR, but will be nice to have a "roady" for back-up and trips!  She is still calling me Mommmmmmm.  I told Karen before she got here that Annabel uses a long "m".  She didn't know what I meant until Annabel called me from the other room.  I have no idea why I'm not Mommy, but I'll roll with it.  She calls Scott Daddy most of the time.  I guess she is done calling him Scott for now.  I miss her when she's not here!!!

Today marks only 5 more weeks of chemo hell!  My last treatment will be on November 12th if all goes as planned.  I am looking forward to this milestone, but at the same time, I am nervous about NOT having any more treatments.  At least I know now that the poisons are working hard to kill the cancer.  What will it be like when I don't have that assurance?  I am sure it will be hard, but I will be busy worrying about surgery and then recovery and then radiation......but I can't help but worry about the chemo working its magic.  These are the big guns I think and the rest of it is just sort of the icing on the cake.  But maybe I think that because I am in the thick of it?  I don't know. 

So, that is what is going on today.  It is absolutely beautiful outside!  It is hard to complain on days like today.  I just wish that fall lasted longer here in South Carolina!

Monday, October 5, 2009

6 DOWN, 2 TO GO!!!

I completed my 6th chemo last Thursday!  Only 2 more to go!!  This time around, I have been sleeping a LOT.  I would rather sleep through the bad part, so I am not complaining.  I have been lucky to have my sisters here to help.  Karen left yesterday to go back to Chicago and Kim came in to help for a few more days.  I hope to be back on my feet by Wednesday. 

Last Tuesday, I went to the doctor to have my blood count checked and it was high enough to have my port fixed on Wednesday.  Scott took half the day off and went with me to the hospital.  I admit now that the anticipation was worse than the procedure itself!  I don't want to have to do it again, though!  I was awake the whole time (I think!).  I asked for more versed at least once.  It was freezing in the room, but they covered me up with warm blankets except for my groin area (nice!).  They told me that I would feel the needle for the local anesthetic and some pulling and tugging during the procedure and that is about it.  It was uncomfortable, but I don't think it took very long.  I could see the catheter and my chest up on the monitors.  They just snaked it up there and grabbed the end and put it right where it belonged.  I don't have any stitches or glue or anything.  The wound is tiny.  After the procedure, I was in "recovery" for a while.  I ate some lunch and then they sent me on my way.  We even got home earlier than expected. 

When I went to have my treatment on Thursday, they were able to get blood from my port very easily.  That was a first and it is a great relief that it is working properly.  When I saw my oncologist, she reassured me that we shouldn't have any more problems with my last two treatments.  She measured my tumor at 3cm.  I was disappointed because I had hoped that it would be smaller, but she told me that her measurements are rudimentary (she measures with her hands for the purpose of the study) and that there is likely tissue surrounding that is not part of the tumor.  She told me that I am doing fantastic, which is really good to hear!  She also reminded me that my treatment is very aggressive.  I am glad that the tumor is shrinking, but I really hope that when they operate, they find nothing there.  Kim says she envisions a pile of ashes.  Ha, ha.  I am with her.  I am done with this crap and I want that thing annihilated.  Anyway, it was good to have my doctor's reassurance.  The treatment itself was not too bad.  Karen was with me and Scott came for a visit on his lunch break.  My regular chemo nurse was out taking a class, but she left me in good hands.  It is a long day.  When we got home, I ate some lunch and went to bed.  I have pretty much been sleeping since then.  I can't seem to keep my eyes open.  I do usually sleep a lot after a treatment, but never this much.  I am glad for it, though. 

My plan for this week is just to take it easy.  We are planning to go to Knoxville again next weekend for the TN/GA game.  I am not planning to go to the game, but I hope to be able to get down to campus to tailgate for a bit if I'm feeling ok.

Less than 6 weeks left of chemo!  My last treatment should be on November 12th.  They will schedule my surgery 4 to 6 weeks after that, which will fall right near Annabel's 2nd birthday.  It is going to be a rough holiday season this year with recovery, but I will just be that much closer to being cancer-free. 

Annabel has been a busy girl!  She is talking more and more every day and loves being around people.  I have gotten extra kisses today for some mysterious reason.  Not that I'm asking questions!  I'll take every one I can get!

Monday, September 28, 2009

Fun! Not Fun. Fun! Not Fun.

We had a great time last weekend when we went to visit the Maynors in North Carolina!  We always have fun with Courtney and Lennie and Annabel is finally old enough to play with their daughters Willow (5) and Laurel (3).  We arrived late on Friday night.  We spent Saturday visiting and the day somehow flew by fast.  The girls did a great job of entertaining each other while we visited and relaxed all weekend long.  They have 5 acres and Annabel enjoyed playing both inside and outside.  The girls took turns driving her all over the place in their Barbie Jeep and she got to meet some chickens and their two pigs and dogs, including Frisco The Taxidermy Dog, pictured here.  Courtney's boss gave her Frisco for the girls and Court suspected that he might be a stuffed real dog.  Suspicions confirmed when his hair started falling out and he was examined closer.  This is definitely the strangest "toy" I've ever seen.  Frisco creeps me out!  I think that Courtney and Lennie were trying to phase him out because when we arrived, he was sitting on a high shelf in their laundry room.  Annabel saw him right away and kept telling me "dog" and pointing up.  He made his way down from the shelf eventually and spent the rest of the weekend lurking in corners and staring.  Shiver!  Anyway, the weather was great, so we spent Sunday morning and into the afternoon lounging outside and watching the girls play together.  I LOVE this picture of them together, even though Annabel is picking her nose.  I think it really captured the moment! 

I was feeling a little worn out on Friday before we left for NC, but I assumed it was because I was so busy trying to get ready to leave.  I felt a little weak all weekend, but again, chalked it up to the excitement of (finally) getting out of the house.  By Sunday, my chest hurt really bad and I was not feeling well at all.  By the time we made it home, I had a fever and felt awful.  I called the doctor on call, who told me to start antibiotics right away and follow up in the morning (Monday).  We called Scott's Mom and asked her to come up because I knew that I wouldn't be feeling great even if I did feel better.  I went to the doctor on Monday morning to get checked.  They weren't able to draw blood from my port, so I had to go to the lab, but there was a misinterpretation of the nurse practitioner's orders for a blood culture and they tagged me for a possible blood transfusion!  (They weren't going to give me a blood transfusion, but let me know it was a possibility...I would have had to go to the hospital, etc.)  Anyway, I texted Scott to let him know what was going on and he was there about 10 minutes later.  Count this rescue #1 for the week!  I was glad he was there when I saw the nurse practitioner though.  She apologized for the mix-up.  My counts were really low, but she felt like I had already hit the low point and that my body was working hard to get better.  She ordered up some IV fluids and the blood culture that I was supposed to have initially and said that she would call me on Tuesday to let me know if I had a bacterial infection.  I spent a few hours in the chemo room getting fluids to rehydrate.  I felt a little bit better after that, but my chest was still hurting.  When I got home, I asked Emily if she would take Annabel home with her to spend the night.  I hate to be without her, but I just really didn't feel like I could do much more than sleep. 

On Tuesday afternoon, the nurse practitioner called to say that I did not have a bacterial infection.  I still had a low fever on and off.  She instructed me to call her on Wednesday if I still didn't feel well.  I called first thing in the morning.  I still had tightness in my chest.  I went in to the doctor and they still couldn't draw blood from my port, so I had to go to the lab to have them get it from my arm again (3 pokes in the arm so far for the week).  My counts were higher, but not good enough for my scheduled chemo on Thursday.  The nurse practitioner was puzzled by my chest pain and ordered a spiral CT scan to make sure that I didn't have a blood clot and also let me know that this would show if I had bronchitis or pneumonia.  Luckily, the scan showed up negative for all 3.  I had a meltdown in between the doctor and the scan, so Scott left work to take me for the scan (rescue #2).  Annabel was still in Lavonia with Emily.  Karen was on her way from Chicago.  I was still scheduled for chemo on Thursday morning.  Scott went to pick Annabel up in the evening and later, I picked Karen up from the airport.  I was feeling better, but......

On Thursday morning, Karen took me to the doctor for my scheduled chemo.  No blood from my port again, so I got my 5th poke in the arm for the week (#4 for the dye at the scan).  Unfortunately, my counts weren't high enough for me to get treatment.  I got an appointment for Friday morning to go to the hospital for a port-a-gram to find out why they can't get blood from my port.  Karen and Annabel and I got to the hospital and waited.  When they called me back for the x-ray, Karen and Annabel went to get a coffee and take a walk.  I had assumed that this was just an x-ray, but I was taken to a room and had to put on a gown and lay on a gurney.  When they came in to wheel me to the x-ray room, Karen and Annabel were standing at the end of the hall.  They went to wait in my room while I had my x-ray.  It turns out that the cath on my port somehow got sucked up into a small vein.  The radiologist came in and explained that this can happen and they fix it by running a cath up through my groin to where the cath is now and "snaring" it and dragging it into its proper place.  They are going to stick a hose in my groin and roto-root!  YIKES.  They planned to do it right then and there, but I asked them to wheel me back to my room so that I could send Karen and Annabel home and call Scott to come to the hospital.  They do this procedure with local anesthetic and versed or something, so it is conscious sedation.  Really, I just thought it was an x-ray!  I had a(nother) meltdown.  I am not about asking "what next", but this is just something that I didn't expect.  So, they were getting ready to prep me for the procedure and Karen and Annabel left.  About 5 minutes later, one of the girls from radiology came in to say that she talked to my doctor and the procedure was off.  She wanted my counts up before I had my port fixed.  It was a rough day, but I was glad to get the heck out of there, even though I have to go back.

I have been relaxing at my Dad's house for the weekend.  Karen is in for 10 days to help and we were planning to visit next weekend before she flies home, but I am going to be recovering from my postponed chemo and will likely not feel like travelling then.  We decided to come here late Friday.  It is a good distraction!  I was worried about being away from the doctor because of the crazy week, but I spoke with the nurse and she said it was ok for me to travel as long as I was taking it easy and not exposing myself to germs.  So I have been roosting in my Dad's chair, visiting and playing games on my iPod while everyone is in and out.  We have had great meals and good times.  I miss Scott when he isn't here!  I am sure he needed a break and I know he enjoyed having friends over to watch football on Saturday.  We are headed back to Greenville this afternoon for a busy week of cancer crap.

This week's schedule is about as fun as last week's, but at least I feel much better!  I have to go to the doctor first thing Tuesday morning to have my blood counts checked to make sure I'm good for the port procedure.  If all is well, I am scheduled to have that done on Wednesday afternoon.  Then I will have chemo on Thursday and the Nuelasta shot on Friday.  After that, I will probably be down for the count for a few days.  Despite the trouble and complications last week, the nurse practitioner has assured me that she expects my last 3 treatments to be uneventful.  We just hit a bump in the road!  She attributes my fever/chest pain to low blood counts.  I am not sure that the port and the chest pain are unrelated, but I doubt anyone will be able to tell me for sure.  I am just glad to be feeling better. 

Unpleasant as it has been, one thing that I will say is that there was not a time this week where I didn't feel like I was getting the best care.  The nurses at the cancer center are wonderful.  My doctor was out on jury duty and I saw the nurse practitioner, who I felt was very thorough and personable.  The interventional radiology team at the hospital was great as well.  I felt like I had about 7 people on my case and they were good from the get go, but were sensitive and reassuring when I got upset over having to have my port "fixed". 

I dread chemo, but at the same time, I will be glad to get back on track.  I'm happy to have Karen here to help out, keep me company and distract me from the bad stuff!  I apologize for unreturned phone calls and emails lately.  I got a little overwhelmed last week, but I hope to catch up on correspondence soon!  As always, I appreciate the thoughts and prayers!

Tuesday, September 15, 2009

Tuesday Update

Here are some pictures from last week of Annabel being silly.  She is trying to lick me in the 2nd one...and notice that she also has me by the neck!  The 3rd picture is of Annabel laughing while eating M&Ms.  She put on quite a show! 
Let's see....last post, I was waiting for Kim to arrive.  She came and spent Saturday through Wednesday with us and we had a nice visit despite chemo.  We did a jigsaw puzzle.  Shockingly, it was only missing 3 or 4 pieces when it was all said and done.  She made me leave it on the coffee table until after she left.  I gave Annabel the task of pulling it apart and putting it back in the box, but I think Scott ended up finishing for her.  Kim dragged me out of the house on Wednesday to go outlet shopping.  I won't say that I was entirely humorless when she was here, but I am sure that I was not the greatest company. 
As far as my last treatment, I can feel the cumulative fatigue for sure, but I had fewer side effects with the A/C than I had with the taxotere.  I am not sure if it was actually a little easier or if I was just so terrified of the new stuff, but I definitely didn't miss all of the aches and pains from my other treatments.  I was mostly just tired and nauseated.  I never threw up, but I had a constant morning sickness feeling for about a week.  I had to take more medicine than I would have liked, but that is usually the case.  My appetite is off.  I am still eating, don't get me wrong!  But I have a hard time deciding what I want and if I choose wrong, I usually pay the price with digestive issues (nice!).  My counselor at the Cancer Society sent me home with some Ensure and Carnation Instant Breakfast and I have been drinking the Instant Breakfast some.  It tastes pretty good I guess and has more nutritional value than all of the noodles I have been eating.
I have been going to the Cancer Society whenever they have group support meetings and am also meeting with the counselor outside of that.  I find it very helpful; it's a nice break for me and the people are great.  The counselor is wonderful.  They also have snacks!  There is a breast cancer support group that meets monthly, but I missed this month because I had chemo that day.  I have gone to the general support group twice now. 
Last week I met with both the genetic counselor and a plastic surgeon.  My appointment with the genetic counselor was just a follow-up to discuss my BRCA1 positive test results.  Kim also had an appointment to have her genetic test.  I think she gets her results next week.  The plastic surgeon was interesting.  He thinks I am a good candidate for a TRAM surgery, but my oncologist has already told me no.  She said that it is too much surgery.  TRAM is when they take a hunk of fat from your stomach and make new boobs.  They also thread some stomach muscles underneath to the boobular (not a medical term!) area.  Please note:  I am not a doctor.  This is what I understand it to be and I was also maybe medicated while I was there and was also maybe feeling really queasy, so this discussion almost made me barf.  If you want to be really grossed out, ask Scott what he said about the bellybutton's role in all of this.  Just thinking about it makes me feel icky!  So, aside from the fact that I was already told that I shouldn't do this by my oncologist, I sort of feel like my stomach muscles belong in my stomach and though I like the idea of getting rid of my belly fat, I do not want to be cut from hip to hip.  Besides, the "bonus" tummy tuck would surely just make my hips, thighs and butt look even bigger!  The other option is implants.  Sign me up!  I can't have immediate reconstruction because I have to have radiation.  When I have my mastectomy, the plastic surgeon will work behind my surgeon and put tissue expanders where my boobs were.  Tissue expanders are like implants, but he said that they are shaped differently.  They start out small and over the course of a few weeks (?), the plastic surgeon will fill them up with saline so that my body can get used to the new ones (sort of like when you get spacers before braces?).  I can keep the tissue expanders indefinitely and will probably have them for quite a while since I can't get my implants until after radiation.  I also have the Avastin treatments, so I'm assuming that I have to wait until after those are done...and then some because I have to be off of that for quite a while before any surgeries.  It's good news because I won't be boobless for the duration.  And the plastic surgeon says that it is good to keep the tissue expanders in for a while so that my radiated skin can soften up some before I get the real implants.  I asked around for recommendations and this guy's name came up every time, so I am going to assume I am in good hands.  I like him and I thought that he was thorough with my consultation.  He also discussed contingency plans if my radiated skin doesn't heal and finishing touches, like nipples.  Yay! 
This past weekend, we were pretty social, which is a change!  Mario and Shannon cooked us dinner on Friday night.  It was awesome and I enjoyed spending time with friends.  On Saturday night, we had Mario and Shannon and Steven and Andrea over for brats and football.  Scott did all of the cooking, but it was really great to visit.  Annabel surprised me by going to bed (even though it took an hour to get her to sleep!), so I was even able to enjoy some time with adults!  It was really strange that we were watching the game and she was playing and pulling all of her toys out (read: making a mess).  I guess it was just another reminder of how fast time flies because last year, she was still a little baby.  She was 21 months old on Sunday! 
I am getting ready to put us in danger of being late for Gymboree, so I need to finish up!  I am looking forward to our weekend trip to visit Courtney, Lennie, Willow and Laurel.  Can't wait to see them and it will be so nice to get out of the house!  Change of scenery!  And next week, Karen is coming back for a visit!  I have plenty of stuff to occupy me and keep me from thinking about my next chemo.  Ugh.
Sorry for the lag between posts.  I never think I have anything to say until I start saying it.  I feel like I spend all of my time in the house lately.

Saturday, September 5, 2009

#5 DONE!

I had my 5th treatment on Thursday, the first of 4 of the A/C combo.  So far, I feel ok.  With my last treatments, I was down for the count by now and while I don't feel great, I feel ok as long as I am sitting still.  Otherwise, I am nauseated and dizzy.  So I am just going to be still until it passes.  I didn't get the Nuelasta shot this round.  That has caused me a lot of pain in the past, so it is one less group of side effects to struggle through.  So as worried as I was about A/C, so far it is not so bad.  My oncologist also said that I was on a very high dose of taxotere, so really, my side effects might be less hellish for these next treatments.  She did point out that I will have cumulative fatigue, but I already knew that.  I am feeling optimistic at the moment.  They put an anti-nausea in my infusion on Thursday called Emend.  It is a 3 day program, so I took a pill yesterday morning and this morning.  No more Emend tomorrow, so I hope the nausea can be controlled with my other prescriptions.  My appetite is not great; I am trying to choke down some bland foods.

My tumor continues to shrink.  This time, it measured the same, but my oncologist said that it is getting smaller and she can feel that the properties are changing.  So that is good news.

On Tuesday, I have a follow-up appointment with the genetic counselor.  I have been putting this off because I know that I will learn about statistics and survival rates and things like that....it might be stuff that I don't want to know, but I am going to go anyway.  I also have a consultation with a plastic surgeon on Tuesday afternoon.  He's probably going to take pictures of my boobs!  Ha, ha.  I have already played out the conversation....my boobs don't really look like this!  They are all wonky and shrunken because of the breastfeeding!  Ssshhh, don't tell Annabel that she ruined my boobs before I found out about the cancer.  Not that it matters; when it's all said and done (mastectomy), I will be a blank canvas! 

It's football time again!  Scott is off to watch the game with his boys this afternoon.  Annabel is spending the night with her Mimi and Grandaddy.  I miss her terribly already, but I am sure she will have a fun time.  And Kim will be here this evening to keep me company, too.  We are going to do a jigsaw puzzle before Annabel comes home. 

Saturday, August 29, 2009

Update





I didn't realize it had been so long since I last posted! I started a few posts, but never went back to finish I guess.
It was a good week & weekend! I felt good, so we did a few more activities. We are finally getting a break from the heat around here. Not every day yet, but last Monday it was pretty mild, so I took Annabel to the zoo. I left the stroller in the car and she did GREAT. We had a fun time. I didn't even have to carry her until the very end. We also went to Gymboree twice last week. I am hoping to have a fun, busy time early this week since my next treatment is on Thursday. It looks like the weather will be much cooler, so hopefully I can take Annabel back to the zoo, to the park, etc.
We went to Lavonia on Saturday for our niece Callie's 6th birthday party. I can't believe she is already 6 because it seems like just yesterday that she was a teeny tiny baby! It was a nice pool party at Lee's sister's house and then we went out for pizza afterward. It was a good time and good distraction. Annabel loved being around other kids and spent a lot of time in the pool with Scott. He must be more fun to swim with because I thought she was pretty unimpressed with the pool/swimming! Neko (our bulldog) also turned 6 yesterday!
We are thinking of putting Annabel in a twin bed soon in the hopes that bedtime will be a little easier for me. Despite all of the well meaning advice, I have worked out my own bedtime routine. Bedtime is the best of times and the worst of times all rolled into one! My favorite time of the day is when I sit down in the rocking chair and hold my clean smelling baby to rock her to sleep. My least favorite part is when she fights sleep tooth and nail and I end up rocking for an hour (or more...or giving up and putting her in our bed...ssshhhh, no criticizing...I have cancer, remember?). Again, I know that my "routine" is not always ideal, but it works a lot of the time. I rock her to sleep and then very carefully deposit her into her crib. The issue here is that nobody else seems to be able to put her into the crib without waking her up. The mattress is set to the lowest setting for our tall baby and the rail still only comes up to her armpits. She could definitely get out if she wanted to. I have seen her effortlessly hoist her foot up to the top of the rail. So, I am thinking that switching her over to a toddler or twin bed won't make things worse, but it might make things easier for the nights when I am not feeling great. The other part of the sleep routine is that when she wakes up in the night, we put her in bed with us. I definitely believe in co-sleeping, but my difficulty with it is that I don't like to put her to sleep in our bed and I also don't want to go to bed at her bedtime. Some people have said that this is confusing, but I disagree. It is a routine and it is what we do every night. Most nights, it works well, but sometimes we get on a bad streak and it is hard to get her to bed. It's all about routine! I have to remind myself of that when we get off kilter.
I had an ultrasound on my ovaries last week. All clear! I have mentioned before that I get a shot (pellet, in the stomach) every 3 months to put my ovaries to sleep, so that should keep the cancer at bay according to the doctor. Because I am BRCA1 positive (gene mutation), I will have my ovaries removed to improve my survival rate and reduce my recurrence rate. My OB/GYN feels that I should have a laprascopically guided hysterectomy because she says there is no reason to keep the rest of it if the ovaries have to go. I was hoping to have the double mastectomy and the hysterectomy at the same time, but both my oncologist and OB/GYN feel that this will be too much surgery at one time. It's likely that I won't have the hysterectomy until sometime next summer when I finish the rest of my treatment. I am confused about the timeline, but I hope to get that cleared up when I see my oncologist on Thursday. According to the clinical trial, I will have 4-6 weeks of recovery time after my last chemo treatment (if all goes as planned, that will be November 5th). Then I will have my bi-lateral mastectomy and then (I think) another 4-6 weeks recovery before I start radiation and begin Avastin infusions again. I have 30 weeks worth of Avastin....once every 3 weeks, 10 times. They have to wean me off of that before surgery because I think it causes you to bleed, so I think it will be quite a while before the hysterectomy and breast reconstruction. I'm pretty sure that they won't do breast reconstruction until after radiation, so I'm not sure where all the rest of the surgery fits in. I have a few plastic surgeon recommendations. Scott wants to do some "field research" at Nepal's and/or Platinum Plus, but I have told him that I don't want stripper boobs; regular boobs will be just fine with me! Ha, ha. If anyone knows of an exceptionally talented plastic surgeon in the area, please share.
The countdown is on again....my next treatment is Thursday. It will be the first treatment of A/C and I am very nervous that it will be harder to tolerate than the taxotere. But at least I'm halfway finished with chemo! I am definitely feeling the cumulative effects. It was a longer recovery last time and I get tired easier. I am still having trouble sleeping sometimes and have anxiety, but I think that is just part of this whole crazy ride. On the hair front, I have some that never fell out and it continues to grow. It looks weird, but I am strangely attached to it! I try to convince myself that I am ok without hair, but every now and then I allow myself to admit that I would really really like to have it back! Practically speaking, it's nice not to have hair, but I also don't like having to find something to wear on my head every time I leave the house. I have gotten used to it and sometimes even "forget" when I'm out and about, but then I am rarely out and about. I am still wearing bandanas most of the time, but I have a nice hat that Karen sent that I wear out sometimes. Not digging the wigs still. I might just change my mind as the weather cools off some.
Speaking of wigs, on Saturday when Scott and Annabel and I were on our way to Lavonia, we drove by a garage sale and I saw a wig on a post. I asked Scott if he would go and get it for me. Well, we stopped and Scott went and got the "wig". It turned out to be a plastic dog with hair, like some sort of collie! He paid $1, said he wasn't going to NOT buy it once he walked up there. We named her Harriet and Annabel was amused until her head fell off. Oh, well! It was pretty funny.
I am currently seeking a new tv show to watch on my iTouch during treatments. Any suggestions? It has to be something that I can get from iTunes I think, so that I can download it. I never finished last season's Lost, so I guess I could start there....Although I will say, with my current "chemo brain" issues, I probably won't be able to follow it! It got pretty complicated there in the end with all the time travel and stuff. I am thinking Mad Men. I haven't watched that yet and I hear it is pretty good. My favorite show right now is True Blood, but only one episode left this season! I missed last night, so I will probably watch it the next time I have insomnia. Which will probably be really soon!
Pictures are: Our 6 year old Neko, Annabel in the sandbox, Annabel partying, Annabel partying with Daddy

Monday, August 17, 2009

The BREAST Years of My Life

Last week I realized and pointed out to Scott that for 2+ years now, I have been either pregnant, breastfeeding or dealing with breast cancer. So, now I will call these the breast years! Lots of other (more important!) stuff going on, of course, but I can't think of another time that shares the common theme of BOOBS.

After my chemo on Thursday, I had my regularly scheduled Nuelasta shot on Friday. My Dad and Kim came from Knoxville to pick me up and take me back to recover there. I had a great, relaxing week and was very comfortable on the bad days. Annabel and I were very well taken care of despite the fact that we missed Scott! Kim and Jeff took Annabel and I to Fox Den to swim in the kiddie pool (pic above of Uncle, Annabel and I). I enjoyed that since that is where we used to swim when we were little. Annabel wasn't too impressed despite the snazzy new float that her Auntie bought for her. My Dad cooked me my favorite dinner on Monday night and I ate lots. Kim took us to the Binghams one afternoon to swim and hang out. Annabel and I got to meet all the Bingham kids. She had a great time playing and we had a really nice visit. We had a delicious family dinner at Seasons on Tuesday night and then I packed up yesterday morning to come home. I was really sad to leave, but also missed Scott. And the dogs!

Annabel is really chattering away. Her current favorite word is "MINE". I guess it's an age thing because she's pretty spoiled and there's no reason why she wouldn't think everything is hers! Ha, ha. She picks up new words every day and we are having "conversations" now. Another new quirk is that she has clothing preferences. Not always a good thing, but cute nonetheless. When we came home last night, she went through all of her clothes and tried a lot of things on. She likes to practice getting dressed and undressed. It is entertaining to say the least! She picks out some interesting outfit combinations.


Some days are harder than others. I think I am feeling the cumulative effects of the chemo now, so I get tired easier and when I get tired, sometimes I feel sick. It seems like I am always feeling sick; it just wears me out. But also, I think these few days in the treatment cycle are sort of a low point. Tonight I indulged myself in "WHY ME". I think it's a waste of time to ask why this happened to me, but I am worn out and short on sleep. Don't worry, I have already taken my Ativan to combat the icky stomach and the anxiety, so I hope to sleep soundly tonight and wake up feeling tons better tomorrow!


And on a more positive note, I have also made an appointment with the cancer society for some counseling. The woman that will be counseling me also usually leads the breast cancer support group that I attended a few weeks ago (she was on vacation that day). So I look forward to meeting her and I hope that she can help me with my cope-r (coping mechanism), which is also a little run down from working overtime for the past few months. I have great support from my family and friends, but I look forward to talking with her since she's an expert! Our Greenville County Cancer Society has lots of great programs that are free to cancer patients. I am so grateful!


All of this has been happening so fast and I feel like I don't have a lot of control over the situation, but I am starting to read and learn more. I am going to make an effort to learn about some alternative complementary therapies and have already made an appointment to see an iridologist. I don't know much about iridology, but it looks really interesting. An iridologist looks at the iris of your eye and is able to determine weaknesses and strengths in your body and then suggest herbal supplements, diet, etc. to help. Of course, I will take any suggestions to my doctor for approval/review. My appointment for that is next month.

I feel like I'm turning into a hermit, but it is so dang hot outside! Not to mention that leaving requires getting ready to leave and trying to wrangle 25 and a half pounds of 20 month old. She is a good girl, but she is not always willing to be compliant, whether it be a short trip or a long trip out of the house. I am ready for some cooler weather!