Long drive...

Well, Friday after my doctors appointments we got immediately on the road & headed North on Hwy 59. Man was it a LONG trip. I keep myself doped up with hydrocodone (10 mgs) every 4 hours and Ativan every 6. I was still pretty uncomfortable. We got home around 130 am. It felt really nice to be home! My brother-in-law had stayed at our house & cleaned it for us. It was really nice.

Recap of my doctor's appointments... The breast oncologist didn't have my pathology reports yet, so she didn't have much to say to me. She gave me a hug though & looked really pleased at how well I came through surgery. She reiterated for me that she didn't think I had anything to worry about by skipping the last chemo or by keeping my nipples.

The plastic surgeon was pleased with my progress as well. He told me that the swelling will go down & that these expanders are not indicative of what my future shape will be. They removed one drain on each side and replaced the remaining drains with much smaller bulbs. They also filled my expanders with about 100cc more saline. Hopefully, tomorrow (Monday) he'll get in touch with his friend at U of L to be my 'local' doctor. According to Dr. S, the U of L doctor is head of the plastics section at their hospital (or something). The plan will be for me to get expanded weekly for about a month. Then once I'm all expanded, the expanders & my foobs will get to 'rest' for 2-3 months. The worst complication that could happen right now is if my expander comes out of the pocket b/c the mesh hasn't completely bonded with my muscle tissue. He's pretty confident I'll be fine though.

Right now the worst thing is that I'm almost completely helpless. I can't raise my arms/hands above my head both b/c of doctors orders & the pain it causes. I can't pick up Rachel or even lift her from laying to sitting for the same reasons. I'm shaky & weak from the medicine. I'm also really emotional. Its awful. I'm such an independent person and it kills me to need help with almost everything. Its probably going to be at least 2-3 weeks before I'm able to lift &/or do some more normal stuff.

Andrew is doing pretty good. He's stressed b/c this puts a lot extra stuff on his plate. He's also worried about me. The kiddos are doing well. I think Rachel grew another chin or 2 while we were gone. Simon is even worse/better at his parroting abilities. They're adorable though!

My brother & his wife moved in next door too! Its great - they have an almost 4 year (in March) girl, Abby, an almost 2 year old (in March) girl, Sarah, and a newborn (January) boy, Lukas. Laura, the wife, is a dentist for UK. She sees all the kids on state programs & such. My brother, Rowan, is in aeronautics. He owns his own business (partnership) called Ron Collins Avionics, now located in Henderson. Anyway, they're a lot of fun to have araound! It's going to be great for Simon & Rachel to have similar aged cousins right next door! Laura & my parents are also great cooks, so I'm looking forward to some AWESOME meals! Anyway, welcome home Jones family!a

Foobie goobies...

Well, I typed too much earlier & made my arms swell up, so I won't do as much tonight. My drains are also leaking out my back. A good portion of the fluid is still going through the tubes (I had the doctors check yesterday), but its also soaking through some of the gauze. I keep feeling like my back is wet, but apparently I'm just paranoid!

I'm hoping that tonight's drain output will all be below 20 ccs like it was this morning! I'm *REALLY* hoping that the plastic surgeon will take some of the drains out tomorrow. I'm just afraid that in addition to having a minimum output, there's also a minimum time for the drains. Theoretically, from my information, as soon as the drains are putting out less than 30 ccs for 2 24 hour time periods they can come out. However, I realize that it has only been a week since my surgery (tomorrow night) & its kind of quick. There can be complications if the drains are removed too soon, so I don't want that either. The fluid that goes into them is best *not* going into my body, so its a fine line. However, as of this morning I only had 1 drain that had 20 ccs in it, the others were 8, 8, and 10 ccs. I'm typically a fairly good healer, so maybe I am ready. I guess he'll let me know tomorrow morning.

Tomorrow's appointments are with my breast oncologist & the plastic surgeon. I'm not sure what the breast oncologist wants with me, but I've got *HIGH* hopes for my visit with the plastic surgeon. After my appointments we're going to start our journey home. We may make it all in one drive, but we may also have to stop for the night somewhere. It will depend on my chauffeurs! Anyway, I'll be updating again soon. I'd better quit now though b/4 my arms swell again!

Building a foob...

Well, yesterday I hope I didn't bore you guys too much w/ my terminology. Today I may bore you again b/c I'm going to explain how my foobs are being built. Since I already have been diagnosed with breast cancer its a different process than breast augmentation, but many of the same things are used. Here's Foob Construction 101!

*NOTE* if you're squeamish about the words breast or nipple, you're probably going to want to skip today's post!

First, my breast surgeon cleaned out all my 'bad' breast tissue. To do this she cut slits running vertically under my arms. She must have used something to scrape it out, but I'm not going to go there b/c it may make me psych out & gross you guys out! However, I do know & find it interesting how she preserved my nipples. Typical mastectomies (even w/ reconstruction) throw away both nipples. That's initially what I figured I was going to do. Afterall, how can you keep nipples & expect to get *all* that possibly cancerous breast tissue out? Initially, I thought - nipple sparing must be a *BAD* idea! However, when I found out I wasn't going to be able to have the reconstruction done with my own tissue I was more than willing to keep a little bit of normalcy, so when the breast surgeon asked I said yes. It also helped that my breast oncologist didn't shy away from the idea. Actually, she said that if it had been any other surgeon, she probably wouldn't recommend it, but since she knows how thorough this surgeon is, she thought it would be a good idea.

Anyway, back to building a foob... While the breast surgeon was cleaning out all the possibly cancerous breast tissue, somehow she *turned my nipple inside out* and scraped it free of tissue. Yes, I said *turned my nipple inside out*! Isn't that nuts? I've got a mental picture of how I clean a bottle nipple in my head only its *my nipple* that's getting cleaned! After removing all the breast tissue, the breast surgeon was finished. Then it came time to build in the newly excavated space! That's where the plastic surgeon comes into play.

The plastic surgeon evaluated my skin, muscle, and nipples to see if he thought he could produce aestheticly pleasing results. I had already agreed that he got to make the final decision in the OR. He apparently approved of the breast surgeon & my overall anatomy, so he began his work. His first step was to create a 'pocket' under my pectoral muscles for the expander/implant. I'm not exactly sure how he did that, but I'm guessing its one of the reasons I'm in pain. Then he placed an expander in that pocket. This pocket us kind of an upside-down envelope - the open end is down. Placing something in a pocket of that orientation doesn't do you much good unless you close the pocket somehow.

So, they've developed a biological mesh that they seal the pocket with after expander/implant placement. The mesh was actually live skin at one point, but it has been stripped of all cells until it is only fibers. Some of the mesh is derived from human skin (cadavers). Other types of mesh are derived from animal skin. I think the ones used in me are from animals. It was the plastic surgeon's choice basically. I don't know what the benefit of animal vs. human mesh is, but since I'm trusting these people w/ my life, I'm pretty much giving them free rein if it sounds reasonable. Anyway, the plastic surgeon stitched the mesh to both my stretched pectoral muscle and my underlying chest wall. Eventually, the mesh will be completely covered with my own tissue as my body heals. The final steps were installing the drains and sewing me back together.

I don't know the reasoning, but apparently expanders do *not* look anything like a normal breast. I'm guessing that he placed it in the position that he did because of my anatomy and what I eventually want to look like (me). The beauty of the expanders is that they can be filled with different amounts of saline to stretch the pectoral muscles enough to allow a decent sized implant to be placed. At this moment, I think mine is filled with 300cc of saline or about 75% of its contents. I think that's what the plastic surgeon told Andrew & dad while I was still practically unconscious.

Hopefully, tomorrow when I visit the plastic surgeon, he's going to add some more saline to the expander before sending me home. I think this will be a weekly or bi-weekly process for at least a month. The plastic surgeon here in Houston has *hopefully* arranged for me to see one of his friends at UofL that is chief of plastic surgery for my other fills.

When the expander has met its maximum and/or I achieve the size I (the plastic surgeon?) want, it will be left alone for a month or two (or more depending on what you read/hear). This is to make sure that when the expander is replaced with the softer implants the tissue won't shrink back to its normal size. That's one of the biggest complications of this type of reconstruction (and even augmentation) - contracture. Basically, my body is allowing this foreign body for now, but once its removed, my body will want to go back to its normal shape. Regular breast implants are not structural at all - they're meant to be as soft and flexible as possible, like a real breast. So if the implant is placed too soon and my body still 'remembers' what my pectoral muscle was like before, my body will build scar tissue around the implants and destroy them. Not the end goal I want.

Once my body has accepted its new shape, I'll have another surgery to replace the expander with the implant. At this moment I don't know whether I'm going for saline (safer, but more prone to fake-looking problems, etc) or silicone (more natural-looking/feeling, but can cause problems if it ruptures). I also don't know exactly what size I'm going to be. These are things that I plan on asking the plastic surgeon tomorrow. I'm also going to ask him to remove at least one drain and hopefully replace the ones I have with smaller ones. These things are driving me crazy!

Well, its time for more pain meds & maybe something to eat, so I'll say g'bye for now!

Foob terminology

Its come to my attention that some of the info I've put on here is a little sketchy as far as true info. I'm assuming that you guys know what I'm talking about, but we ALL know what ASSuming does! ;-) Anyway, here's a quick rundown of stuff I may talk about and probably already have as far as this battle goes...

Foob = fake boob. Some BC survivors/pre-vivors use this term for their new breasts whether using a flap or implants. I think its slightly more common for those of us with implants.
BC = breast cancer
Pre-vivors = individuals who have a high risk of BC that are undergoing prophylatactic treatment whether with chemo, PBMs, or increased screenings.
PBM = prophylactic bilateral mastectomy
BM = bilateral mastectomy; removal of both breasts
Saline implants = prosthetic for breasts that is composed of a thin silicone shell filled w/ saline. Saline is considered a safer option for implants b/c it can be readily absorbed by the body if a rupture occurs. Saline is basically salt water.
Silicone implants = prosthetic for breasts that is composed entirely a silicone gel. Silicone is generally considered a more asthetically pleasing option for implants b/c it has a more similar feel to regular breast tissue. It is generally considered a bit more dangerous in the case of a rupture b/c it is recognized as a foreign body by your body.
Expanders = temporary prosthetic for breasts that is composed of a thin silicone shell that can be filled with saline in stages. They're used primarily for my type of reconstruction because unlike breast augmentation, my implants will go *under* the muscle to provide more tissue/skin coverage for the implants. This is important to protect the implants from rupturing.
Lymph nodes/system = a bodily system that basically filters your blood in various areas of the body before it enters your trunk/heart to prevent infection from spreading to this vital area. Most of your lymph nodes are located in your arm-pits and groin area. There are also some in your chest, throat, and a few other places. I think everyone has a slightly different number of lymph nodes in each spot. Your spleen is also a large part of the lymph system.
Lymphendema = a syndrome that is caused by even a slight insult/injury/infection of a limb or body part that has had its lymph system disturbed. I think its most common in arms after injury to the lymph nodes under your arms. I have to worry about this (like my mom does) b/c they dissected out at least 3 lymph nodes during my surgery to check them for cancer. I'm not entirely sure how life-threatening this is, but its pretty serious. So much so that I can't have my blood pressure or injections/blood draws on my left side where my sentinel lymph nodes were removed.
Sentinal lymph nodes = the lymph nodes that are closest and/or drain from the area of injury and/or tumor. The 3 lymph nodes they tested of mine were sentinel nodes from my left arm-pit area b/c that's where my tumor was.
Drains = instruments of torture! No seriously, they're hollow reservoirs that are attached by tubing to the surgery site. They allow fluids to empty from the surgery site and not interfere with healing. I think initially the fluid is primarily blood, some tissue, and some lymph fluid. As healing progresses, the amount of fluid decreases. The amount of blood in the fluid also decreases as healing progresses. Most doctors require that each drain produce less than 30 ccs of fluid for 2 days in a row before removal. I have one that is already at that point & another that should be there by Friday! I can't wait!
BRCA1/2 = 2 genes that are commonly (10% I think) the genetic cause of breast cancer. These genes are also responsible for increased risk of ovarian cancer. I am BRCA1+ which means that my BRCA1 gene is mutated - my lifetime risk of breast cancer (b/4 I was diagnosed) could have been as high as 80% (I think) more than the average woman. My lifetime risk of ovarian cancer is anywhere from 40 - 60% higher than the average woman (I think).
Ooph = oophorectomy; removal of the ovaries
Hyst = hysterectomy; removal of the uterus

Please let me know if you have any terms I've used or use in the future that are unfamiliar. I can easily look them up if I don't already know about them. I thoroughly enjoy researching things!

Fumbling w/ the foobs

Doctors appointment went well - breast surgeon. She said everything was looking good. Her only concern is my right nipple... I found out today how they actually accomplish the whole 'nipple sparing' procedure. She turned my nipple inside-out and scraped it of as much tissue as possible. So imagine a baby-bottle nipple turned inside-out & then flippped around again. No wonder my right one isn't happy! The left - the 'affected' side - is actually healing quite nicely even w/ all the sutures (absorbable) and bruising. She also didn't have my pathology report back yet, but that's not unexpected since its only been 5 days since my surgery. Wow - only 5 days! She also said that the odd shape of the foobs is due mostly to the expanders & will be fixed when I have the implants put in later this year. Man I hope so! She also upped my pain meds - what a wonderful thing! I was not making it through the entire 4 hours w/o feeling a lot of pain, but now I am. Its great to be able to move for more than 2 hours!

The bad news was that no one will take my drains out until the plastic surgeon sees me Friday. They won't even replace the huge ones w/ smaller ones until then. :-( Right now I'm wearing one of my maternity button-down shirts w/ one drain safety-pinned to each side & the other drain hanging from a rope/belt around my neck. I'm also leaking fluid where the drains attach to me, but again that's not unexpected.

So Friday I have an appointment w/ the breast oncologist at 830 am. I'm not exactly sure what she's going to do for me, but she wanted to see me & since I'm here... Then at 930 am I have an appointment w/ the plastic surgeon. I'm hoping to discuss w/ him my options as far as implants (silicone or saline, size, shape, etc) as well as removing some drains (hopefully 2) and figuring out what I'm allowed to do when. Right now I'm not supposed to pick up anything heavier than 5lbs on either side. Just so you know - this laptop is probably over 5lbs, so I have to had dad or Andrew hand it to me. Maybe he can also re-assure me that my foobs won't look so horrible when he's actually finished w/ them.

Foob tube... well, a foob story anyway!

I had my surgery Feb 19th. It was supposed to be a 'quick' 6 hour surgery, but it turned into a 9 1/2 hour surgery w/ lots of time in the recovery room. I had a bilateral mastectomy (BM) w/ sentinel node mapping in the left w/ expander reconstruction. I was terribly nauseated immediately after surgery & I think that may have contributed to increased pain since I had dry heaves for a *long* time after surgery. I got out of the hospital Sunday, went shopping at Whole Foods on Monday & have been miserable all day today (Tuesday).

My franken-boobs/foobs are pretty scary looking to me. My left axillary (arm-pit) area is really scary b/c they did a re-dissection of my tumor site to clean up the margins & such (I think). I have 'wings' in the crease of my arm-pit where I'm swollen & such. I got to keep my nipples & they're doing well so far. They're dark & bruised, but the capillary refill time is good. The incisions that I have are in my axillary/arm-pit area & I can't really see it. The plastic surgeon (Sacks) filled my expanders about 75% (I think) with 300 ccs of saline during surgery. To me my foobs look really flat & funky. My husband says they don't look bad. I guess he'd know since he definitely spent more time looking at my boobs naked that I have! ;-) Really, I guess my biggest 'problem' area is my arm-pit area. The way I was built I had a lot of arm-pit boob. Now w/ all that tissue gone & the only thing in its place in the front I feel like my sides look funny. Of course, I'm still really swollen & bruised, so I'm sure it will change (hopefully for the better). I'm still not entirely pleased that I have to have implants, but considering how I feel vs. what I saw my mom go through for her TRAM reconstruction, I guess I got the better deal. Now I just hope they look normal & I don't have crazy complications. I've been known to have absolutely *crazy* scar tissue formation, so I'm really quite worried about capsular contraction.

I have 4 drains right now. One of them on the right causes a terrible burning sensation across my whole boob when I'm in some position (I'm not sure exactly what position it is until I'm in it & in pain). My drain output is pretty low - the biggest one is about 100 ccs already - the smallest is about 30 ccs. I'm hoping to get rid of at least 2 of them Friday. I have an appointment w/ my breast surgeon (Meric) tomorrow. Although I don't think she has any say about my drains I may ask her anyway. I'm also going to tell her about the peculiar sensation I have in the left breast. It feels like bubbles in my breast. I call the left one "Bubbles" & the right one "Burns". I don't mind Bubbles so much - except for her (his?) looks. However, Burns can just chill - please!

I'm still in Houston, TX (MD Anderson) b/c I live 900 miles away & needed to have my follow-up appointments. I'm hoping to have all that taken care of by Friday. I'm also hoping that I get some *good* medicine for the trip home! Highway 59 going North through TX is not the easiest to ride! I'm probably going to ask for extra pain meds & some anti-nausea meds just in case!

Overall, I guess I'm glad I had the surgery. I have a whole lot of respect for you gals that are doing this BEFORE a cancer diagnosis. I don't know that I'd be willing to put myself through this even w/ a *really* high percentage chance of breast cancer. I watched my mom recover from a TRAM BM after her cancer diagnosis 4-5 years ago. I thought I was ready for the pain & recovery... I'm not so sure I was. My surgery wasn't even as involved as hers since I don't have the huge abdominal insult, but I'm definitely not a real happy camper. I can't image doing this on a whim (ie for cosmetic reasons) or even just b/c I was afraid I'd get cancer. You gals that have the PBMs are now my heros! You go girls!

Foobs = udderly painful?

Well, the foobs are still udderly painful, but hopefully that'll get better soon. I don't know how or why my experience yesterday made me suffer so much today, but it did/is! Tomorrow I have an appointment w/ the breast surgeon... Too bad she can't relieve me of my drains or this infernal surgical bra... That's the plastic surgeon's call.

If 'normal' boob jobs are anywhere *near* as painful as this I absolutely CANNOT imagine willingly doing this to yourself!!! The drains alone are a pain in the @$$ - not to mention the swelling, bruising, surgical bra, etc. Suffering for the sake of beauty has never made sense to me, but this would be ridiculous! I mean, comparing this to wearing high heels is like comparing a splinter in your finger to a spike through your head! If it weren't for this nasty cancer crap, I'd NEVER have considered anything like this. Maybe someone out there who reads this has done the boob job thing and can share their reasoning, but I'm thinking you've gotta be nuts! Knowing how miserable mom was after her boob job & a tummy tuck doesn't make me understand that either! You can't possibly think you're that ugly! If you do - you need better friends! (Sorry if I offend anyone in the 'audience'.)

Here's my rant... Its horrible how girls/women feel compelled to be the most beautiful and/or perfect. I'm not completely resistant to wanting to look & feel beautiful - don't get me wrong. I've just never really had that serious push to go beyond the bare minimal. I hope Rachel never feels the need either. I know that most of my friends are beautiful in their own ways and to their own husbands/significant others/friends. However, I'm sure there are some that I know who have considered surgery as an option. However, experiencing this as I have (granted I'm sure there are significant differences), I'd say friends don't let friends do needless surgery!

In my opinion, no one should feel the *need* to have to have surgery to 'perfect' their body. Also my opinion is that ensuring that friends & loved ones don't feel that *need* starts at home. Friends need to identify and cultivate the spark they see in their friends. Spouses need to tell one another that they think the other is beautiful/handsome as often as possible. Parents need to tell their children that they are beautiful/handsome just as they are. We need to teach our children that there is MUCH more to life than the physical. If we build a strong enough foundation with our children, the childhood banter will truly be banter and not taken more seriously than it should.

I sincerely hope that I've never made anyone feel less than God's gift. I'm sure I probably have, but I apologize for that now. God thinks we're all wonderful - He created us the way we are. Since God is everything good, beautiful, and perfect, we should believe Him. If there were surgery to make us more God-like (in a good way, not a power-hungry/greedy way) then we should ALL sign up. However, God created us the way He did for His own (very good) reasons. Cherish that!

The bottom line is... Friends don't let friends suffer through unnecessary surgeries! If you love your friends and family - don't let them do this to themselves! Its horrible (in my opinion)! Love your friends & family & cherish them as they are - God's gifts to you!

The boobie prize...

Well, I was feeling really good yesterday. However, that apparently made me do a bit too much. I woke up early this morning not able to move I was so stiff & sore. I took a pill & went back to sleep only to wake up in the same shape. Now I'm losened up a little, but still more stiff & sore than I was yesterday. The good news is that even with the extra pain & stiffness, my drain output is not significantly any greater than it was yesterday - actually its a bit less.

More updates...

I got my shower today... Geez, who'd think that could exhaust you! When the maid came to do housekeeping she needed us to leave, so we went to Whole Foods Market here in Houston. It was a mad-house! I used one of those wheelie carts & felt like an idiot! That exhausted me too. Andrew has emptied my drains again & the c...ontents are lessening... Hopefully by Friday they'll be low enough for them to be taken out... I had a shaky moment when I got sick for no apparent reason - gotta love Zofran! I have a little bit of a fever (just 99.5), but that's what the antibiotics are for! I've actually had enough concentration today to read 2 books! Now I'm going to run out & Andrew will have to go find me some more! Dad's getting his bed out, I'm pretty sure it'll be lights out for him soon. I guess I'm going to get off here & probably be lights out soon as well. Goodnight & thanks!

OMG that HURTS!

Sorry for the silence lately, but I've been a bit busy having surgery & stuff. I had my bilateral mastectomy w/ reconstruction using expanders done Friday. The surgery was about 9 hours long. The breast surgeon located my sentinel lymph nodes and dissected 3 of them - all were negative preliminarily for cancer. The plastic surgeon placed expanders under my pectoral muscles and inflated them w/ about 300 ccs of saline. Then they stitched me up & woke me up. It wasn't a great experience. The doctors were great though. There just isn't any way to prepare yourself for this kind of experience. I knew it was going to be utterly painful, but the realization of the pain was MUCH worse than I anticipated. I think I look horrible, but Andrew says its not that bad. The breast surgeon did a slit under my arms - that's the only scar I'll have eventually. I even got to keep my nipples! Right now w/ the swelling & stuff its pretty horrid in my opinion. However, the worst part is the itching right now... Pain meds & antibiotics plus all the tape they put on me makes me ITCH! I can't reach most of the spots - so its frustrating too. The pain can be controlled by the meds, so its not too bad.

I've got to get these off my chest!

I've been thinking (thanks Martina) about the blessings God has given me through my body. I have carried 6 children, even though only 2 made it to breathe. My children are very healthy and smart. I was able to nourish one of those children strictly with my body. God has also given me the strength to carry my last babyfull-term with no real complications even through a cancer diagnosis. Even though I'm getting ready to alter my physical body, I know God knows that I've done all I can!

God has blessed me so abundantly that if I focus on the blessings only, the bumps in the road fade into nothingness. My blessings are my wonderful husband (for putting up w/ all my problems), my wonderful children (for being exactly what they are), my exceptional parents (for being the greatest parents & support group ever), my great in-laws (both sets - for their assistance when necessary/requested), my awesome friends (those I've actually met & those that are digitized), my overall good health (besides the cancer). God has given me a purpose... Its not as awesome as some people's purpose, but it is (in my mind) to be someone others can look to to see that faults and hardships don't negate strengths and prayerfulness. My purpose is not to be outstanding and a public figure, nor is it to be perceived as holy, or highly intelligent, or even highly blessed (though I feel that I am). Instead I feel that my purpose is to be extraordinary at the ordinary. In other words, I hope that when people see me they can see that even with my faults and hardships, it is possible to be cheerful, courageous, loving, pious, devoted, energetic, and down-to-earth. Sometimes I'm shocking at my openness online (I'm NEVER this long-winded or detailed in real life), but other times I make up for it by being philosophical and pondering on the abstract.

Even if you aren't happy with your body, you need to realize its all a gift from God & He has a purpose for YOU. God bless! Perhaps your body isn't your strong point, but everyone has one - its just a matter of finding it!

I think I should go to bed and count my blessings. Hopefully I'll wake up tomorrow morning pre-surgery feeling ok. Hopefully, I'll wake up post-surgery not too sore, not too shocked, and not to crazy. I pray for those who have to go through this conscious (ie Andrew & my dad waiting in the waiting area & my mom 900 miles away, etc). I know that everyone's prayers will sustain me. Thank you!

12 hours or so to go...

We're here... I had my last meal at Olive Garden. I've had enough Ativan today that I slept most of the trip here. That's *highly* abnormal for me! I report for surgery at 9 15 tomorrow morning. The actual surgery part probably won't start until 1030 or so. Its supposed to be about 6 hours. Hopefully someone will post here or somewhere w/ an update as soon as one is available. This trip is leaving me breastless!

When life gives you cantaloupes, make 'em lemons!

We're up & starting our 900 mile journey to what feels like my execution. Hopefully we won't hit any bad weather & can get there around 6 or 7. Dad's driving, so no telling when we'll get there. I'm trying to prepare myself to sleep in the car... a difficult feat for nervous little me on a good day, much less a day like today. I'll try to keep you guys abreast of the situation. 24 hours (or so) to new boobies!

Still here... waiting...

Well, we didn't have to leave today. They're doing the test during my surgery instead of before. I guess that's ok. We got to spend one last day as a 'normal' family. Simon ran around & played with his toys, Rachel went from plaything to plaything, Andrew went to the garage for a little while, & I spent time w/ everyone.

Today is Ash Wednesday. I would typically be at Mass right now, but the anxiety has left me feeling like I shouldn't be far from a bathroom... In the spirit of Ash Wednesday I've been thinking... what am I? I saw a post on FaceBook that gave me this inspiration...

I am a wife to my husband.

I am a mother to my children.

I am a daughter to my parents.

I am imperfect at all these things (and others).

I am strong, but I am also weak.

I am courageous, but I am also cowardly.

I am hopeful, but I am also worried.

I am free to be all these things and more because God made me so.

All these things do not change regardless of how I feel at the moment or what surgery/disease I have. Some of these things have been enhanced by my cancer diagnosis. Some of these things are just written in my heart. I know that I owe God everything that I am and will be. He gave us His only Son to die for OUR sins - not His own. How silly is it for us to think we know better than Him the agony and trials we face? It is time for us to turn our lives over to HIM. I pray this for you and for me.

I don't know...

I don't know how often I'll be updating in the next week or two. We (probably) leave tomorrow to head down to Houston for my surgery on Friday. The reason I say probably is that somehow one of my appointments for Thursday has disappeared off my schedule since last week. If I really don't have to have that test done, then we'll stay home the extra day. However, I'm pretty sure it'll still be required. I'm waiting on a call back from MD Anderson.

NOTE: I'm getting ready to give TMI (too much information) about my breasts, so you may want to skip this next portion.

Anyway, last night I was laying in bed & it struck me suddenly that by this time next week I will probably be in some pain, but I'll also probably have little to no feeling in my breasts. Its a weird thought. At this point it seems kind of like a big deal. I find myself focusing on what my breasts feel like - how the sheet/clothing feels on my skin, the texture of it all, and the way they just *are* a part of me. I know (from reading other people's experiences) that 1) the expanders feel like baseballs/hard, 2) sometimes the feeling comes back to the skin, but sometimes not, 3) the implants won't react the same way my natural tissue does, and 4) all in all its worth it to be 95% sure I won't get breast cancer again.

It seems pretty flaky right now that I'm concerned w/ how I'll look and how my breasts will feel. I've *never* really cared how I look - heck, I'm usually lucky to have brushed my hair (no need to worry about that right now) - but now I know I'm going to be different looking than before and it bothers me. I've also *never* really noticed how various parts of my body feel. I mean, I know I've got nerves & stuff everywhere. However, I can't even remember what its like to have real feeling in my fingers & toes, much less imagine not having feeling in my breasts. I mean, in the normal course of life, I'd say women only realize how their breasts feel when they're being intimate (if then) and when they're nursing. Otherwise, at least for me, they're just part of my body - a not-so-important part at that. However, now that I know I'm going to lose them, they've taken precedence over all else.

NOTE: I'm finished w/ the TMI portion of this post (I think).

I started looking online at other women's stories about their experience w/ breast cancer or even the way they dealt with their genes (BRCA1 or BRCA2). On the screen, it seems like everyone but me was/is just fine with the prospect of leaving parts of themselves on the operating table. Perhaps I seem that way too for others. However, I know (partly b/c I'm there now and partly b/c I've communicated w/ some of these other women) that a great deal of thought, agony, and tough decision-making went into the decisions made. I honestly don't know if I was 'just' a BRCA carrier that I'd go through w/ this type of surgery. However, the cancer decided my fate for me. It would be utterly ridiculous in my opinion to *not* have the surgery... I mean, a 60% risk of further breast cancer compared to a 5% risk??? Who wouldn't take that reduction in odds?

Anyway, time is getting short for me to be the way I am. I know that fundamentally I'm still the same and I will remain the same regardless of what surgeries I have. However, I know that in the past 4 years there has been a lot of changes in my personality, relationships, and body. I've gotten married after thinking I'd had the one love of my life (I was DEFINITELY wrong about that one - I love you Andrew!). I've delivered 2 healthy babies. I've mourned the loss of 4 babies through miscarriage. I watched (and hopefully helped) my mom through her battle w/ breast cancer. I've fought my own breast cancer battle and continue the fight. I used my breasts for their purpose - nourishing my infant son, and I've also had to realize that's not always an option. I've grown spiritually closer to God in my opinion, but I've also realized just how fragile our lives are even with His infinite care. I've met people who quickly stepped out of my life. I've met some, who through dogged persistence on their part usually, have come into my life to stay. I've communicated with people that I've never laid eyes on before. I've got friends from all over the country (world?) that I wouldn't trade for anyone. All in all, it has been a growing experience, not without its own pains, but definitely with wonderful rewards. I thank each and every one of you who has said a prayer for me or my family, kept us in your thoughts, or even just read my rantings/ravings/rationalizations. I know this fact alone has saved me - I have people, both near & far, who care about me almost as much as God, himself, cares about me. Thank you & God bless!

Happy birthday Simon!

Today is officially Simon's 2nd birthday! On this day 2 years ago right now I was in L&D hooked up to IV's (pitocin & antibiotics mainly). At 6:36 pm Simon made his way officially into the world. He's never looked back since. Wouldn't it be nice to be able to say that about yourself? That you've never looked back w/ regret, hard feelings, etc?

Yesterday the grandparents came over & man was it a full house! My mom & dad, Andrew's mom w/ her husband, Andrew's dad with his wife, and my granddad. The kiddos were in 7th heaven. Rachel got held the whole time & Simon got cake, gifts, & lots of attention! He loved every second of it!

Tonight we're experimenting w/ the kids in their 'real' beds. Rachel has been in mine & Andrew's bed-room in a pack-n-play since she was born. Simon has still been sleeping in the crib. However, tonight Rachel is in the nursery in the crib while Simon is in his race-car bed. He napped in there earlier today with no trouble. I'm trying to make it fun for him, but not too fun since I want him to sleep. Rachel is out like a light - like always. Simon is being a bit more difficult, but I think he'll settle down. The key is to not have him wake up Rachel since they're now right next door to one another.

For the next couple of days (until Tuesday I think) we're going to cling close to one another & spend as much family time as we can before my surgery. Even though this surgery isn't as major as the one I wanted, it'll still leave me unable to do much for a while. So we're trying to store up as much kiddo time as we can. Plus we're going to be gone for at least a week, so, we'll miss them.

I can't decide if I'm going to have a vague "Tata to the Tata's" moment or not. On the one hand, I've read that it can be beneficial. However, in the back of my mind its giving it too much attention. The end result I want is to look and be the same as I was before July 7, 2009. I know in *many* ways that's not possible, but my brain wants to at least pretend. I've also thought of taking photos of me now to see the changes. However, again, I'm wondering why? I can't go back and hopefully, like the pains of child-birth, my body image will adapt itself to my present condition, not my past condition. Oh well, I still have a week or so to think about it.

Finally finished w/ the trip from hell!

I don't know who we made so angry, but the weather was certainly NOT with us this trip to Houston. While we were driving down it snowed all through TN, MO, & AR. Then it poured down rain all through TX w/ a little snow mixed in while we were in the northern portion. The whole time we were in Houston it rained too. Then we were trying to beat the bad weather that was supposed to hit this (Friday) morning by leaving right after my last appointment. It didn't work out so well - it snowed almost almost all the way up through TX! SNOW in TX!!! How often does that happen & why did it have to happen while we were trying to drive?!?! Each leg of our journey took 17+ hours verses the 13 hour trip we made back in July over the exact same route!

I had a pretty decent doctor day Thursday though. I was a little nervous b/c I was getting all my tests & examinations for ovarian cancer (the 2nd part of my genetics - BRCA1). I've had 'female' problems practically since puberty, so I've always kind of wondered if that will make the likelihood of me having ovarian cancer worse than a 'normal' BRCA1 carrier. Anyway, all my tests were negative for any problems. I spoke w/ the gynecology oncologist about going ahead and removing all my female parts to prevent ovarian cancer. I was afraid she would be *really* against it since I'm so 'young'. However, after cautioning me about the possible horrors of surgical menopause she listened to my reasons. She said she'd do it if I still want it done when I have my exchange surgery (the expanders get replaced w/ the real inserts about 3 months after the initial surgery). She did give me a book to read about the pros and cons of doing the surgery, but I don't think it is really going to change my mind.

I've spoken to another woman who is my same age, has the same age children (altho reversed - her girl was 2 & her boy was 2 months when she had her surgery). She didn't have cancer 1st, but she did the prophylactic surgeries. She said the side-effects were very minor for her. I'm polling others that I know have had the surgery (both actually) to see what their experience was like. I know everyone is different, but if several had good experiences, then I can at least hope.

It was so sweet to come home & see the babies again! Simon immediately latched on to Andrew (like usual). Rachel kind of did the same thing. She couldn't take her eyes off of him. When we had them both home with us, Simon was a bit jealous of Andrew's attention to Rachel, but he soon go over it. Before too long I was holding Rachel while Simon sat in my lap & 'helped' me feed her. He can count to 8 now all by himself. He's learning more of the alphabet too! We're having a grand-parent party for his birthday tomorrow. We decided to keep it really low key b/c of the illnesses going around, my upcoming surgery, and the weather. He'll have a good time regardless. Since even he's not quite smart enough to read I'll tell you guys what we got him for his birthday... A Radio Flyer tri-cycle! Its the fold-up kind & for a while anyway we're going to keep it in the house. We also got him a dump-truck w/ sand-toys (shovel, rake, & molds) for the sand-box we're going to build him this summer. He's already gotten 2 other gifts from us - a plush Ford tractor & a set of New Holland farm equipment: dually tractor, gravity grain wagon, semi-truck w/ grain trailer, and a combine with bean & corn headers. He absolutely loves it!

Tomorrow should be interesting. I've already put him to bed. The odds are 50-50 that he'll stay in bed. He's been with Brenda & she has a tendency to hold him in her bed all night. He was exceptionally tired though, so hopefully he'll stay asleep!

Not as bad today

I seem to have somewhat recovered from my bad news yesterday. I'm still not happy with it, but I'm learning to accept it. Something that people that know me realize is that I resist change in all its fashions. Heck, when I was 7 or 8 they switched school buses on me & I actually cried. The driver, route, and fellow students on the bus were the same, but the bus itself was different. I'm OCD - its kind of hard to get around that. Anyway, at this point, the fake boobs will have to be ok. Maybe by the time they need replacement (usually w/n 10 years) I'll have enough belly fat to do the other reconstruction. If I'm lucky, they may even have a better method by then!

Today we spoke w/ the breast surgeon. She was very informative. She said that since I'm young & such complications should be minimal. She also gave me a choice that I wasn't aware I'd have... (this might be TMI) She can use 'new' technology and spare my nipples. That way I get to keep what I have visibly, but reduce the chances of cancer by taking out all the stuffing. We're leaving it up to the plastic surgeon at the time of surgery as to whether that is truly viable or not (a lot depends on asthetics at that point). However, when I look down I'll be seeing as much of 'me' as possible instead of some creation. The breast surgeon said I was a good candidate for that b/c of the placement of my original tumor and age. She said there was *very* little risk of any cancerous cells getting left behind. I think if I'd have been able to have the reconstruction I wanted I'd have forgone the nipple sparing, but I think maybe this will help me feel like I look like myself.

One troubling thing that the breast surgeon (she's an oncological surgeon) said was about possible radiation. I think that may be a standard CYA talk that she gave me, but it worries me none-the-less. Radiation would be used if they find any more cancer cells within the tissue they remove.

She also worried me a bit w/ my lymph nodes. She said that since my original tumor/scar is so far into my armpit (axilla) it can disrupt their methods for finding what they call my sentinal lymph nodes. They examine these lymph nodes for cancer b/c they generally the ones that are closest (as far as drainage is concerned) to the tumor. With the placement of my tumor/scar in relation to where lymph nodes are found, their is an increased chance of not finding the right nodes and/or getting false negative readings from the nodes they find. There's a decent chance that I'll have to have all my primary & secondary lymph nodes removed during surgery. They don't like to take chances w/ leaving cancerous ones in the body. Removal of these lymph nodes may decrease my cancer risk, but it leaves me wide open to lymphendema - swelling of the arm & sometimes chest - for the rest of my life. Basically what happens in lymphendema is that if I get a cut/scratch on my affected arm/side instead of the infection/inflammatory response draining properly it gets hung up in my arm & chest b/c the lymph nodes aren't there to filter & clear it. I don't think lymphendema is life threatening most of the time, more of an irritation and concern.

Tomorrow I meet w/ the gynecology oncologist and w/ Dr. L again. I also have more tests. Right now I'm feeling pretty positive that I'll be able to convince the gynecology oncologist to remove my ovaries/etc post-haste. If there's good reason (besides my youth and other such minor concerns) I'll keep them. However, I'm completely paranoid about getting ovarian cancer next. Although I'd love to have more children, I much prefer to live for the children I already have. The problem is that ovarian cancer is usually not detected until it is in the late stages. By the time its detected the survival rate is only 25%. They're working on finding out new/good ways to detect ovarian cancer, but so far I don't think they're having a whole lot of luck. While surgical menopause at 28 doesn't sound like a great option, neither does living in fear of ovarian cancer and quite possibly dying of it at a young age. I think I'm going to go for living w/ early surgical menopause rather than taking the risk. Of course, part of that is also my OCD coming out. I just want to be finished w// this worry of cancer - NOW. I want things to go back to their ordered normal ways. I'm not much of a risk-taker...

Thanks for the prayers & thoughts.

Disappointed...

I just found out to day from the plastic surgeon that I won't be able to use my own tissue to reconstruct my breasts after surgery. I don't have enough abdominal fat. Even though I just had a baby 2 months ago, I'm too thin to have my breasts reconstructed from my abdominal fat.

This is probably where I'm going to get offensive, so... If you're prone to getting your feelings hurt, you should probably stop reading NOW.

I don't want to hear the jokes like, 'I've got plenty - I'll donate mine.' or anything either. I don't want people saying/thinking, 'Why are you whining you've got a flat belly?' I don't even want the cute comments of 'Go to the donut store/etc & eat lots.' To be completely honest, I don't want anything but a bit of sympathy for my situation.

I want to look NORMAL. Not like a Barbie doll or some skinny chick who got a boob job to try to look better. Instead I have 3 options: 1 - (the most viable) is implants, 2 - no reconstruction, and 3 - no surgery at all (least viable). I'm pretty sure that I won't be comfortable with myself if I don't at least have something there, so I'm going for the implants. The thing is that I really don't want to look like I've had a boob job. I mean REALLY don't want to. I don't want to go for a month (or more) with tissue expanders that don't even look real. I don't want to live w/ the over-expanded balloons on my chest for at least 3 months (according to the surgeon). I don't want to have to have another surgery to replace the expanders with the implants. I don't want ANY of that to happen. However, I'm stuck w/ things the way they are.

Before you go off thinking that I had unrealistic expectations and/or I should just be happy that I get to have reconstruction, let me tell you what I knew/thought before I went in. I knew there was a possibility of not having enough tissue (read back a few posts & you'll see me say just that). However, from the books & photographs of real women who'd had the procedure, I thought I was ok. I am also happy that any type of reconstruction is available for me. I know what non-reconstructed chests look like and I don't know that I could live with that.

However, those of you that really know me should realize that my main goal in life is to be that natural, normal, happy woman that guys & girls alike feel comfortable talking to and laughing with. I don't try to be skinny - I eat like a horse most of the time. I don't wear skimpy clothes or wear lots of make-up. I ride horses as a form of entertainment. If I have one pair of shoes that hasn't been out in the horse-lot I must have just bought them & never worn them anywhere. I try to get along with everyone by cracking jokes if necessary (they're usually un-funny, but sometimes that makes them funnier), giving comfort if necessary, etc.

I'm also more than a little obsessive compuslive and get out of whack if plans change. Sometimes even something as small as parking in a different area (like at my work) can leave me feeling a bit out-of-sorts. Yeah, I know I should probably get some medication/treatment for that. So that OCD aspect of me is one of the big reasons this has upset me so much. Just imagine if you can, how much just my diagnosis screwed w/ me w/ my OCD and desire to be normal. Can you say, "FAT CHANCE!"?

Tomorrow I meet w/ the breast surgeon and have more tests (see previous post for my actual schedule). Hopefully, I won't find out anything else that messes with my mind.

Go SAINTS!

I'm not a football fan & I'm not typically a New Orleans kind of gal, but I was rooting for the Saints. Yippee! I'm thinking that the Saints winning can be taken as a sign of good things to come. After-all, the saints are people we emulate as Catholics/Christians. I know I've been wearing St. Peregrine out in my prayers!

Andrew & I are all packed & ready to head out early tomorrow. The kids are already with their respective grandparents. Simon is with Brenda - my mother-in-law. Rachel is with my mom & dad. Hopefully they won't forget us while we're gone. We'll probably be leaving around 6 am and hopefully arriving around 730 pm (still Central time). Andrew is a good driver, so I'll be reading in the passenger seat. Here's the run-down of what I know is happening this trip.

Monday

Drive all day

Tuesday

845 am Meet w/ the plastic surgeon. At this meeting I'll hopefully find out that I'll be able to do the reconstruction I want. I should also be able to get some idea of how long the surgery will take. I'll also find out what size I'll be able to be.

320 pm Mammogram

Wednesday

900 am Meet w/ the breast oncology surgeon. At this meeting I'll find out more details of what they're removing and how long the surgery will take.

1100 am Blood tests

1130 am Chest X-ray

1230 pm Ultrasound

Thursday

1230 pm Ultrasound

115 pm Anesthesia evaluation

230 pm Meet w/ gynecology oncologist. At this meeting I'll find out more about when/if I have to have a hysterectomy. Hopefully I'll also address some of my questions regarding my risks of ovarian cancer and hysterectomy side-effects.

300 pm Meet w/ Dr. L (breast oncologist). I'm not really sure what this will be about since I'm finished w/ chemo, but...

330 pm Blood tests

Friday

Drive all day

I plan on trying to update the blog & my facebook. However, I don't know if I will feel like it or have time. So keep the prayers coming & check in on the blog. Thanks!

Also, since Lenten time is growing nearer I'm trying to get geared up. I'm going to miss part of it, but I'm going to try to do a few things. Here's my biggie: Go to Confession. I'm hoping to get in the habit of doing it more often. Here's a good examination of conscience and general guide for Confession. Even if you're not Catholic, Lent is the best time to try to prepare yourself for God. He sacrificed so much for us during Lent, we should sacrifice some for Him!

Busy week

We had a busy week this week. Wednesday we went down to Madisonville to visit my co-workers. Simon was a big hit b/c he's grown so much. He's able to entertain everyone w/ his words & actions. Of course, he's so shy (NOT!) he doesn't say anything... Actually we couldn't get him quiet for them to actually do work! Rachel amazed them all b/c she's already so big. They teased me & told me she was already half-grown since this is the first time they've seen her.

Its weird to go down there now. Its been so long since I've been there to work (July 30 was my last day). There have been 2 new hires (both women Thank God!) and my partner (other biologist) is now full-time in Madisonville. One of the mainstays of the lab has moved to another lab (yep, Joe, I called you a mainstay). One of the other guys has gone & gotten married! I guess everything else is pretty much the same, but its just weird to go there & not actually have the responsibility of working!

As if that didn't wear me down enough, we had James & his entourage (Jen & Vickie) over on Thursday. Simon & James had a wonderful time playing w/ Simon's various toys. James even let Simon tackle him repeatedly - even though Simon outweighs him by at least 5 lbs! We had lunch together and everything. We even had Rachel for a little bit of entertaining.

Today was a relaxing day - except Rachel apparently didn't get the memo. When I got to mom's this afternoon they told me that she got up at 2, 4, and finally 6 am. That's not typical for her. At least lucky for me (Thank God) mom & dad had her not me. So when I got there she had made a mess all over herself, so she got a wardrobe change first thing. Then she decided that she didn't want to sleep or be quiet - she wanted to be held while I stood! I wasn't allowed to sit or lay, just stand! We can't decide if she's feeling better or worse. She's also eating more, so we're leaning toward her feeling better.

Of course, now, Simon seems like he's not feeling as well. His nose is running clear & he's coughing a little. He's also sleeping a whole lot! I actually had to wake him up from his nap at 430 pm. That's really unusual! He's also really sensitive. Even watching a cartoon where the characters are in 'danger' is making him ask us to change the channel. For anyone w/ a little one that loves vehicles - I highly recommend Bigfoot Presents: Meteor and the Mighty Monster Trucks. Simon absolutely loves it! I'm feeling a little scratchy myself, but I'm pretty happy regardless!

Andrew is glad the work-week is over. He's worked really hard this week to get things in order before we leave for Houston. Its hard that we're going to be gone for so much of February. We're really going to have to hurry back for Simon's birthday next weekend. Then we're just going to have to turn around & leave again. :-( My poor babies are going to live with mom & dad (said sarcastically & w/ pity for myself not them). Actually, its probably poor mom & dad to have to put up w/ both my kiddos when they're not feeling 100%. Since they're so great they say they're glad to do it! I love my parents to death!

Play date

I'm exhausted from our playdate with James ( Jennifer Tinsley Tuck & Vickie Tinsley ). We had a great time. I'm paying for it now. Simon went to bed with absolutely no fuss! He was so tired, but so happy! Thank goodness for my mom again! She's got Rachel just in case she wakes up in the night! I just woke up again, but I'm ...going back to sleep for the rest of the night!

Coming closer...

I just now realized that in just a little over 2 weeks I'll be having my surgery. Really, this week is the last week I have 'free' before my surgery. I'm not quite as freaked out as I was, but I'm still a bit nervous.

Rachel gave dad her snots. He's feeling bad right now.

Simon is loving life as always!