My crazy to-do list

I've mentioned it a couple times now and several people have asked about it...What exactly is on your To-Do Before Mastectomy List?

It's a compilation of every thought that comes to my head that I feel like I need to get done before February 27th.  Some things are along the lines of nesting while pregnant, some things are practical needs, some thing are broad statements and goals.  There is no particular order.  It's just what comes to my head each day.  I've always been a list maker.  I always pick a fun font and check things off as I go.  Here's a peek:

Item	Comments	Status
1.                 Pray more		On going
2.              Schedule a meeting with Father Sal
3.              Run more	Broken again—I would not recommend purchasing a treadmill from Future Fitness Plus!	Weekday Mornings  & Sundays
4.                Lose weight	Not done yet, but on my way thanks to Chrystal and Energy Fitness	Monday 6:00, Tuesday 6:30, Wednesday 4:30 Saturday mornings
5.              Clean the house—deep clean cupboards, closets, basement	This is kind of my version of Dad’s cleaning the crawlspace out.  It’s just me avoiding doing the things that actually need to be done.	Basement done Bedroom Closet done
6.               Figure out a schedule for the girls during surgery/hospital stay and two-three weeks afterward	I have to ask for help and that’s very hard for me
7.                 Take family photos	Thank you, Mary Baugnet!	DONE
8.                Write about my feelings honestly	Tougher at sometimes than others.  I like to hide things in humor.  I really don’t need to worry anymore about hiding my craziness	On going
9.                Order pictures, backup, and put in albums	Ordered, backed up
10.            Put together a schedule of bills to pay
11.            Sort through girls closets to put away clothes that are too small	Adrienne’s shirts done
12.         Inform Aila’s teachers at school & sign up new people to pick her up/drop her off
13.         Clean the fridge
14.           Clean the house	Going to happen a lot of times in between
15.         Talk about it with my children
16.          Figure out what to say to my students
17.            Finish report cards
18.           Prep for long term sub	Luckily I have lots of stuff from maternity leave still
19.           Send letter home to students’ parents
20.        Take Mitch out for a fancy dinner	I have my ideas!!
21.         Get my hair cut and eyebrows waxed	I don’t think that I’ll be wearing lipstick to my mastectomy like the movie, but I will make sure that I look good for the big day
22.      Get underarms waxed	I hear it’s going to be a challenge to shave there for a while, waxing might help with this
23.      Charge the electric tooth brush
24.        Get the pre-approval confirmation from insurance
25.      Get the short term disability info
26.       Do all my pre-op appointments and tests	MRI done, PS done
27.         Make sure I have plenty of hoodies/comfy pant/ lounge wear for recovery	I picked up the pre-requisite velour sweat suit on clearance at NY&Co.  I feel like whenever you see someone on TV having breast augmentation, they are always wearing one.	done
28.        Buy post mastectomy bras	My PS recommended “front closure sports bras” until I am healed.  Do you know how hard it is to find front closure sports bras available in less than a DD!	Done
29.        Teach the girls to safely ride piggy-back in case I have to carry them when I shouldn’t yet	Thanks for the idea, Chrystal!	In progress, every night they love this practice time!
30.        Buy men’s cheap white tanks	I have big time texture issues and if I feel the same way about these scars as I did my C-section ones, I’m going to need to have some soft fabric over them at all times.  Plus Dad always insisted we wear an undershirt.	Done
31.         But a spill proof cup	Great one for Christmas! Thanks Beth and Rick!	Done
32.      Cry when I feel like it
33.      Spend pre-surgery time with family doing something fun
34.        Stock the freezer with premade meals	Each meal we make in January and February is doubled and one package goes in the freezer	In progress
35.      Restock the pantry with necessities	It is a crisis if we run out of mayonnaise, ketchup, or peanut butter in this house!
36.       Write out a calendar of important activities and events that will take place during recovery	I hear that you can become very forgetful during recovery.  I’d hate to miss something important.
37.         Target shop for other necessities	Recovery would not be the prime time to run out of laundry soap or Pull-ups
38.        Teach Mitch or find someone to update my blog with the vital info post-surgery while I’m out of it.	I won’t be able to nor interested, possibly, in writing just after surgery but will want everyone to know how things went
39.        Buy more dog food	There’s no way I will be carrying that bag for a while post-surgery
40.          Groom the dog	I’ve been putting this off because it’s too cold in our garage to have our bi-monthly “Stella Shearing Day.” Maybe I should just pay Golrusk to do this again for a while?
41.           Procure more pillows	I like to “procure” things from Mom and Dad’s house.  I always intend upon returning things
42.        Borrow Mom and Dad’s extra recliner from basement & Rearrange living room to make room for it	Some say that’s the only comfortable place to sleep for awhile
43.        Freak out	Because of that MRI scare, I think I’ve gotten this covered.  Thanks Stephanie and Kendal for being the first to help me handle the crazy.	Done (for now)
44.          Pack for the hospital: comfy clothes, slippers, socks, unds, toiletries (don’t forget electric tooth brush, glasses), blanket, pillow, lifesavers,	Cannot be done until the week before
45.        Buy an iPad	This is just wishful thinking…We’ll probably be buying a new treadmill instead
46.         Find someone to loan me a back scratcher	Whose house do I remember seeing one at all the time?
47.           Acceptance & Calmness

Sticking to it

I had a great conversation with my doctor today.  We decided to stick to our original plan.  She consulted with other doctors working together to review my current MRI results and compare them to the ones from in the past.  Apparently these lumps have been there in the past, but I wasn't aware of it.  They have changed just slightly in size, so that they became large enough this year to raise a red flag.  But when comparing them to last year, they have grown such a small amount that waiting 1 month, 3 weeks, and 2 days until surgery does not put me at risk for much further growth.  She also looked at the margins around the lumps and there is a clear 2 cm away from anything else.  With these clear margins, we are safe to proceed with all the plans I originally chose!  February 27th will be the date!

PS

We met today with my plastic surgeon for one last time before the surgery.  I made all of my wishes well known.  I have this fear that by having a male handling my reconstruction, I'll end up looking like Pamela Anderson.  I made it clear that I would not be happy if my end result looked like that.

I asked a ton of questions some of which he probably thought were stupid, but I asked anyway.  I did ask what he thought of the woman who exhaled during a workout and her body swallowed her implant, which he assured me would not happen to me no matter how hard I workout.  Also apparently no amount of push-ups after the initial recommended healing time is going to ruin them.  I was really looking forward to an excuse to never do them again, Chrystal. :)

I even took the dreaded half naked photos.  The doctor said at one point, "Oh...we can't forget the pictures, you're going to look real good and it's going to be fun to look back at these."  Really?  Fun?  These pictures were part of my motivation for working out so much lately and something I was dreading.  I had a few volunteers to come and have theirs taken too with me on New Years Eve, but I'm not sure if they would remember that now.  I won't mention names :) But I will let you know if down the road I do find it "fun" to look back at them.

Mitch gave his approval of my choice in doctor because he liked particularly when the doctor said, "This is a pretty crappy situation your in, but we'll make you look real good after it." Sounds great to me!

Flip-Flopping

No news yet.  No decision yet.  I'm still flip-flopping daily on what I want to do.  I'm considering taking votes.  Here's the pro/con list so far for the biopsy:

Pro

• The procedure isn't nearly as bad as I thought.  Several women on the FORCE message board coached me through it.  They described it as undignified but not painful. 
• During the biopsy they would insert a clip at the site that would serve as a marker for when the tissue is removed.  They can look over this tissue surrounding the clip much closer than the other tissue for the best results.
• We would know exactly what we're dealing with and I could make my choices known before surgery.
• If we find that it is atypical hyperplasia or DCIS, the surgery is no longer being done prophylactic (by my own choice) and would make things with insurance a lot easier. 
• If it is something, giving it 1 month, 3 weeks, and 5 days to grow before surgery is a risk, so we'd know to move faster.

Con

• Breast MRI has a high rate of false positives.  One European study in 2008 stated 5 out of 6 were false positives.  This could just be a false positive.
• Lots of bruising afteward and a small scar.
• If we find that it is atypical hyperplasia or DCIS, the results of the biopsy (unless it is found to be cancerous, which my doctor was clear saying it does not look like cancer yet) would not change the plans for my mastectomy already scheduled. 
• More time off from work, when I'm trying to save my sick days to use for the recovery
• It would take few days recovering from the biopsy in which I cannot work out.  I already hear Mom's response to this one, "Would it kill you to take a few days off?"  No, but I just don't want to.  It keeps my mind off of things. 

I picked up my pro/con habit from watching Gilmore Girls.  Crazy coincidence...I checked out the book "Pretty is What Changes" by Jessica Queller about her journey dealing with hereditary cancer risks.  As I was reading, I found out that she was a writer for the show Gilmore Girls as she was going through testing.  She talked in the book about crying in her office one moment and then having to race off to a writer's meeting pitching a scene about Luke and Lorelei the next.  Just another reason to love that show.     

Hmmmmm....

I had a feeling that the results from my ultrasound experience was too good to be true.  I left the hospital on Monday after it thinking that the lumps found on MRI went away; that they were maybe a small cyst that dissolved or something cycle related.  Wrong.

Dr. Colette called today and explained to me that they likely didn't disappear.  Instead, they are just too small to be picked up by ultrasound and in an area that ultrasound isn't as reliable for anyway.  My options now are to do MRI guided biopsy or just wait until surgery time (or move up the surgery date.)

MRI guided biopsy, based solely on what I've googled, doesn't sound particularly enjoyable.  I'll take you with me on my google tour for the night.  According to radiologyinfo.com, "Most women report little or no pain."  It sounds like a typical breast MRI but a device will be used to "gently compress between two compression plates."  I'd like to see if these same (probably male) authors called mammography gentle compression.  "One [compression plate] is marked with a grid structure.  Using computer software, the radiologist measures the position of the lesion with respect to the grid and calculates the position and depth of the needle placement."  They go on to discuss how the area will be numbed and a core needle will remove a small amount of the tissue 3-6 times.  I have three areas of concern, so rinse and repeat for more like 9-18 times.  This could be 2-3 hours of hanging out in superman position on the MRI table.  But we'd know exactly what these abnormal areas are and what we need to do (if anything) about them. 

Waiting until surgery, however, means that we go into it not knowing what will be in there and potentially what we could be up against.  It could be nothing--just a false positive.  It could be just the start of irregular cell growth like atypical ductal or lobular hyperplasia.  Those are the easy things.  I'm not even going to write the other things that are flashing through my mind that it could be or what they could end up being after 2 months of waiting. 

If we wait until surgery and the intraoperative (while I'm knocked out) pathology report comes back bad, we have to be "intellectually honest" as Dr. Colette likes to say about all of our decisions to save skin, nipples, and/or reconstruction methods.  She'll make the best decision she can for me because I'm going to be knocked out on the operating table at this point and won't be able to voice my opinions.  I could wake up with a completely different result that I what I closed my eyes expecting. 

The intraoperative initial pathology could come back good, but they will still do more detailed examination of all of the tissue that will take a week to process.  This means that surgery would use all the methods that I carefully agonized to make a decision over, and I would wake up without any surprises.  But a week later if that final pathology report comes back with a bad finding, we would need to do modifications.  Now we couldn't go back into surgery and remove the skin at this point, but this would mean that my nipples would need to be removed.  The only positive either way, is that I'll be free from almost all tissue that further cancer could grow already at that point. 

I asked Dr. Colette what she wants me to do.  I told her that I don't know what my abnormal results looked like in comparison to those with cancer or those with normal healthy tissue.  I trust her opinion, and even though she told me the choice is mine, I need her to give me guidance on this.  She said that she has her thoughts, but wants to consult with a colleague first to get an outsider's perspective.  We'll meet again next week to decide. 

I guess I better start working on that before surgery to-do list because I know that if we take the wait and see method, that I'm going to want to move up my surgery date a few weeks!

What a week

It has been quite a week!  It's been fantastic to spend these last few days celebrating the holidays with family, but we've also had a lot on our minds. 

It started out a week ago with my MRI (see the previous post called "I'm a puker.")  They were unsure of whether the pictures would turn out because of my uncontrollable movement while I got sick.  They called the next morning to say, "The images were all readable."  My response, "Good, so they all looked OK?'  "Your doctor will go over the results with you, we're just calling to let you know they turned out and don't need to be retaken." Hmmmm....

Later that same day I received a message saying that I needed to call my doctor back to talk about the results.  This is typical.  However, we we unable to catch each other all day over multiple tries and each time the receptionist didn't give anything away.  That was my first clue that something was really up.  Monica is usually the one to say, "Dr. Collette looked over the results and said your films looked BEAUTIFUL!"

Then we received a call from Dr. Colette in the evening.  I wasn't home but she talked to Mitch.  She said she'd try back later.  A doctor calling you at home after 5:00 from their personal phone line; that was clue #2.

When we finally connected on the phone, Dr. Colette told me that there were 3 suspicious areas found on the MRI.  This was what I'd been dreading for the last five years. 

I had two options as she saw it.  One was to just wait until surgery and see what it's like when we get in there.  That would mean that I could go in thinking I'd have one type of surgery and wake up with a very different result if when in there they found it to be cancerous.  My second option was to go for a secondary ultrasound and biopsy of the areas.  This would me possible pain and scars now, but we'd go into the surgery knowing exactly what we were dealing with.  She was also very clear that whatever the biopsy found could completely change our plans, meaning they could be gone before the end of the year in the worst case scenario. 

I figured that I have been aggressive in everything I've done so far along this journey, why stop now.  I immediately said that we needed to do the biopsy.  It was originally scheduled for the 29th.  But after trying to sleep just one night with this fear and anxiety, spending hours trying to find the spots myself without success, consulting dr. google, and my mind racing through all of the possible ways my life was suddenly going to change, I realized I could not possibly wait a week. 

I called the hospital in the morning and talked to someone in the radiology department.  I asked a ton of questions and then ended with, "I don't know if you can tell from the thousands of questions I just asked, but I'm really nervous about this.  If you have any openings earlier, I'd gladly take one...even a cancellation or something...I can be there in like 10 minutes."

That wonderful women found an opening for me today.  At 10:30 this morning, Mitch and I went in.  I knew they'd do an ultrasound first, then they'd use the ultrasound machine to guide the biopsy because none of the areas can be felt.  They dimmed the lights and began.  After 45 minutes of searching and taking plenty of ultrasound pictures, the technician said she was going to get the radiologist for a better look.  He then spent another fifteen minutes taking more images.  Their conclusion: there was nothing that they could find to be biopsied.

YESSSSS!!!!!  I'm healthy!!!!  All those prayers we were saying worked! Best Christmas present ever!

My doctor still needs to take a look at the ultrasound pictures and to see if she agrees with their determination.  The radiologist did warn me that based on the locations of the questionable areas, ultrasound has its limitations and that if Dr. Colette is still concerned she has other options before surgery.  I'm anxiously waiting to hear what she has to say, but I feel pretty confident in saying it was all just a scare.

In all honesty, I'm surprised that it took me this long to have a scare like this.  I did have one other problem with an exam, but that was when I was 21.  It's a very different type of worry when you're young and carefree. Now having children to be here for, it brings that worry to a whole new level.  I was sick to my stomach all week long, couldn't eat, had trouble sleeping. There's no way I am doing this again.  It's just a scare, but it completely confirms to me that I am making the right decision.  I cannot do this every six months after every mammogram or MRI.  In every book I've read, every BRCA positive woman has a big scare like this that puts them over the edge toward choosing risk reducing surgeries.  Mine just waited until had already scheduled it and my surgery was just 2 months away.  I guess I can check freak out off my list of things to do before surgery now. :)