30 September 2011

Two Weeks Out of Surgery


Today I am two weeks out of surgery.  I have reflected some about the changes thrust upon me and I'm thankful that I'm still ok with all that has happened.  It's quite a kick in the stomach to be diagnosed with the very thing that killed your mother.  Especially when it killed her when she was thirty years older than yourself.  I really feel that what saved me shpilkes here was how I was initially led to believe we had caught it VERY early, (instead of just early.)
 
I was immediately so mad at my tits for turning on me that as soon as I had the diagnosis, I had pretty well written them off.  ("OK, you wanna play hardball?  Try me.  Two can play that game.")  I think it actually helped that the cancer hurt, because I had been exercising pretty hard, and wanting to start running again and my boobs were kind of holding me back.  It hurt to run.  That was another thing that prompted me to mention it to my doctor.  So right from square one I had every intention of getting rid of them and no serious illusions about a lumpectomy. That has helped tremendously as I look in the mirror these days, trying to get used to seeing what I'm seeing.

My entire shape has changed.  Not just in front of my ribs, but rather from my head to my knees, I have been totally re-proportioned.  And I must say I really like my new shape.  For years trainers have been telling me I have good muscle mass, (albeit smothered in marshmallow fluff, some of which came from marshmallow fluff,) but I've never really been able to see it.  Now I can see I have broad shoulders and strong-ish arms.  (Losing muscle mass as I sit and type here because I'm on frigging bedrest... )  I have small hips and no saddle bags, (thanks to walking like a madwoman for the past three months, and again, disappearing.)  For the first time in a very long time I actually look athletic, and healthy and dare I say - lean?  (OK, maybe not lean, but a hell of a lot more lean than I looked two weeks ago.)  And I am excited by the possibilities of rebuilding this new body into something terrific.

 
The only thing I am second guessing at this point was the (almost) automatic decision for re-construction.  I like how I look now, and I wonder if I really need foobs (fake boobs) to feel right again.  Having the expanders in does complicate the recovery and as you may have realized, I'm tired of being debilitated.  There is also some discomfort associated with what they had to do to my chest muscles to make the pocket for where the implant will eventually go, not to mention the stretching of the skin and muscle.  And I feel totally unqualified to decide how big I want them to be now that I'm digging being flat.  For years I've felt having big boobs was better than having small boobs.  Totally cultural brain-washing.  I now am happy to be joining the other team.  Let's hope I can get rid of the marshmallow fluff so I look as good as the picture.

29 September 2011

Nuts and Bolts Update

The type of Chemotherapy I will undergo is T C, which is Taxotere and Cyclophosphamide. The Taxotere damages a component in the cancer cells when they split. Something about the mitochondria. Cyclophosphamide interferes with cell DNA by linking guanine causing cell death. This has been in wide spread use for about four years. I will have four treatments, each three weeks apart. I will lose my hair, which is probably a good thing since I've been coloring it so long I don't know what it really looks like. I'm hoping it grows back red, but a close second would be if I go a nice salt & pepper color all around instead of the grey patches that prompted me to color it in the first place.

After I finish the chemo, I'll graduate to hormone therapy. My tumor checked in at 90% positive for estrogen receptors. Tamoxifen for five years is the protocol to starve whatever is left into deep hibernation, if not cell death. The tamoxifen binds to the receptors so the cells can't feed off of estrogen. They do the hormone therapy after chemo so the cancer is still active when it gets hit with the chemo drugs. Whatever is left after that then gets starved.

I've had family help since before my surgery and that will continue until October 11th. I really hope the steps I took yesterday will assist me in healing at a more appropriate rate. I've given up the surgical bra in favor of a couple of 6 inch ace bandages. That seems to be doing the trick as I had very little drainage this morning. The issue is my skin sliding over the muscles in the areas where breast tissue was removed. The ace bandages seem to be preventing this WAY better than the surgical bra did. I have some different discomfort from this, but it's not bad. (It makes my left armpit throb.) I had hoped to make it to temple this morning (and last night) for Rosh Hashona, but that didn't happen. Kim took the kids this morning and I'm sitting up on my iPad doing this post. Typing on the wireless keyboard is not bad, I'm fairly well supported in my recliner and I don't feel my chest skin sliding around. I was shocked at the reduction in drainage this morning. I really didn't understand the healing process before it was detailed to me yesterday. I need to be down to less than 30 cc's per side in a 24 hour period for two days before the drains can be removed. It's looking good today so far.

28 September 2011

Arrrrrrgh!


What a demoralizing day!  But I had a nap and some cake and I feel a little better now.  We met with my new oncologist today, whom I will dub Dr. Kimo, (get it?  Chemo?!?)  Dr. Kimo graciously fit me in today in spite of trying to get ready to leave on vacation, so his schedule was a mess. Dan and I were there for 2 1/2 hours total, of which 1/2 hour was actual appointment time. Once in there, I stated my preference for an aggressive course of treatment, and they ran with it.

Dr. Kimo said that because of the size of my tumors, it was entirely reasonable to expect to do chemo, without doing the risk assessment of the Oncotype DX. So we aren't even doing that testing. Dan was a little disappointed, as he wanted a firm risk of recurrence percentage. Dr. Kimo said that given the existing pathology report my risk would be medium, (within the range of 15 - 40% ).  With Chemo and Tamoxifen that will be reduced to below 10%, which is what we were looking for.

The Doctor then explained what kind of chemo I'd have, which I totally forget and have to look up. He did allay our fears that it might be medieval and I would feel like crap the whole time. I know it's called C/T and I'll look it up and explain it in the next little while. It's a fairly new treatment, within the last four years, and apparently not as toxic in that it doesn't cause heart malfunction. Yay!! I had a blood test before I left and my first chemo appointment is scheduled for October 18th. It'll take between 3-5 hours and if you have any suggestions for music to kill cells by, please email Dan your list of selections. He's in charge of my iPod.

Onto Two-Drain, who wasn't Two-Drain, because he is on vacation, but was the Two-Drain Substitute from his office. Evidently, I misinterpreted the instructions last Thursday. I still have two drains. My drains are still draining much more than they should be. This is happening because I'm doing too much. TDS, (Two-Drain Substitute), explained in excruciating detail how the healing process works, including why my drains get plugged. 'Nuff said, it's gross, you don't want to know. But suffice it to say, his instructions were, "Be a VEGETABLE for the next two (2) weeks". I am not to use my arms at all. "Aha", you say, "what are you doing typing this?" But I am not. Kim is typing, I am dictating...and I hate it.

So the new regime is; sit all day, do nothing, no walking, no holding the iPad while in bed, no playing games on my iPhone, no just grabbing something, and definitely no rehab exercises. Guess I'll be watching some movies. If, I manage to remain still and quiet for 5 days and my drainage reduces to acceptable levels, I will get my drains out on Monday. Dan thinks it's not going to happen.

Postscript: You get no pictures because I am demoralized.

27 September 2011

Rest is Good


I have a couple of things to report.  The oncologist called and I have my first meeting with him tomorrow, at which time I will decide whether he's my oncologist and if so, what his pseudonym will be.  I also have a follow up with Two-Drain and I will probably have one of my two remaining drains removed. The left side is still draining more, (because there was more trauma there with the sentinel node biopsy,) and I just don't think he's going to say it's cool.

Today I laid in bed most of the day.  I slept on an off, even though I slept pretty good last night, (about 8 hours!) but I was just really really tired.  I think I've been doing a little too much.  Yesterday I walked a hill (the one up to the kids' school,) and I really felt that in my core.  My legs can take it but the hills are still a little hard for me to do.  If I walk, it will have to be flat, and while I'm eager to do so, I'm not sure it's what I need to be doing right now.  I'm going to rest more in the next few days instead of pushing it and see where that gets me.  I have gone a couple of days now with no vicodin, and instead have been taking big honking 600 mg ibuprofen tablets every 6 hours or so.  I'm still somewhat uncomfortable.

The backs of my arms are killing me!  On both sides, I have hyper sensitive skin - clearly the nerves are not amused with the major surgery, and especially the left side with the necessary work Dr. Boob did in the axillary (arm pit) area.  It burns, tingles and is numb all at the same time, (if you can fathom that.) Last week when it got a little humid, I sweat a bit which was agony because my skin was sticking together and lifting my arm felt like I was flaying my armpit.  I had a fan going in the bedroom and the air brushing over it felt like pins and needles.  Washing that area with soap and water feels like sandpaper.  It is very uncomfortable and while I have found some mention of this on cancer boards, no one has a remedy or even a suggestion to lessen the discomfort and no one has any inkling how long it lasts.   Ironically I have had a friend suggest acupuncture.

26 September 2011

The Kubler-Ross Model (The Five Stages of Grief) 

A few weeks back a good friend asked me how I am doing.  She had read the blog and talked to me but I don't think she really believed what I was saying or how I was saying it.  I think she thought I was still in the denial stage.  As I have explained before, I just refuse to acknowledge that this is a life threatening event, not because I'm in denial, but simply because I haven't been told anything different.  My prognosis has always been good, both because of our incredible luck in finding it early and my decision to be extremely aggressive.   I didn't really have a denial stage, (except for that split second that day I stepped out of the shower,) and I didn't have an anger, much of a bargaining or depression stage either.  I went almost straight to acceptance.

I've never once thought "why me?" I suppose this is because with my mom's history and my health peculiarities, I've always felt as though I would have breast cancer, not an 'if' but just a matter of 'when'. And when I looked at the timing, it's actually pretty good timing for me - our life is stable with no big changes on the horizon, I'm in a terrific support system, the kids are able to be more autonomous, I'm in better shape right now than I've been in years, I'm still young enough to weather a major surgery, the big fat honking house projects are almost all done, and what is not can wait without a wholesale compromise to our comfort.  Rather, I've been thankful this didn't happen five years ago when we were in the middle of moving, or seven years ago when Dan was deployed, or ten years ago when I was pregnant.  I actually feel pretty darned lucky.

I didn't really bargain.   It wasn't a case of , if I can just have a lumpectomy, I'll become a vegetarian to offset the future risk.  Or If I get through this, I promise I'll volunteer at a cancer center.  I just decided that I'd take care of this the best way that modern medicine can.  Again, I made the decision as soon as I heard the diagnosis that I would be aggressive.  I never once really thought of saving my breasts, or eschewing chemo.  I've felt right from the beginning that this bout of breast cancer is not going to kill me.  What I've always been worried about was a recurrence, which is why I feel chemotherapy is in order.  We'll find out more when we talk to the oncologist but if it will offer some protection, bring it on.

I am not depressed, although I routinely suffer from it.  But I take my meds and manage it just fine.  Having cancer has not affected my mood, except to make me much more selfish about taking care of myself.  (A change any mom can tell you is warranted.)

So here I am, having arrived at acceptance in short order and preparing to fight the good fight with no baggage hanging on.  I stepped up my fitness routine before surgery, and I'm back walking again.  I had my double mastectomy and am working my way back to strength and flexibility after it.  I'm waiting patiently for the oncology stepping stone to pop up in front of me so I can move forward.  And that is honestly where I am.

25 September 2011

It's Cancer Limerick Sunday!


Pathology, more to be done
On both of the tumors, not one
On to phase two,
Oncologist, that's you,
Go find me a hat that is fun

24 September 2011

Nausea Versus Pain

You know how you can have chronic pain and kind of not realize it?  Like when you sleep in the amazingly comfortable hotel bed instead of your own and wake up without a backache for the first time in months and that's when you realize that your back has been hurting for months?  My 'discomfort' had been getting worse as I had been cutting back on pain meds and I didn't realize it until I took a full dose of vicodin last night.  Wow, what a difference!  So I'm back on the vicodin, even though it's making me nauseous.  It seems I must choose between nausea and pain and today I choose nausea because I really, really hurt all day yesterday.

I went for a nice walk this morning - over three miles, so I've got THAT going for me...  It feels good to walk.  I'm not nauseous when I walk.  I may have another stroll this afternoon.

The drains, while a necessary evil and a pain in the side, are officially beginning to gross me out.  I really hope I can lose them next week!

A shout out to my peeps - stuff is getting done.  My sis, Kim, of course, who has been running the house, Patricia, who has been coordinating everybody else, folks who are dropping off meals, picking up kids after school and doing errands and airport runs.  Y'all are marvelous and I'm very thankful for your help.

Reading makes me nauseous.  I'm going to go lie down or throw up.  (Could go either way.)

23 September 2011

One week out

I saw both of my surgeons on Thursday.  Dr. Boob took a quick look and then went over in detail what the path report said.

The report was better news than we had anticipated given the brief phone call on Tuesday.  Yes the tumors were larger than we'd hoped, but they weren't 'ugly'.  The grade of the tumor measures how funky the tumor cells are.  The wackier the cells, the worse the cancer.  (Presumably cells that still look like they are supposed to also act kind of like they are supposed to.)  My tumors were grade 1, which means they still kinda looked like what they were supposed to.

Secondly, while there were isolated cancer cells in one of the sentinel lymph nodes, they can't be sure they got there themselves, as they were isolated.  They could have been forced through when the dye was inserted, when I had the original biopsy done or during surgery.  Or they could have broken off by themselves.  In any event, the lymph nodes were working properly.  I will not have radiation.  I will have an oncologyDX (more pathology on the tumor removed) done in order to assess what my chances of recurrence are so we can properly calculate how much (if any) chemotherapy will lessen my chance of recurrence.

Dr. Boob released me to the oncologist.  I should get a call from that office within a week.

Two-Drain's scrub nurse took out my stitches and that would have been a much more pleasant experience if his office had a foot masseuse. The worst part was removing the surgical tape.  There was very little pain, but a hyper-awareness of what was going on even 'though I averted my eyes.  Dan held my hand and he and Two-Drain talked about Legacy of Healing. Against all odds, and my initial judgement, evidently, Two-Drain is a mensch.  I stand corrected.  And I had to admit I was wrong about five times to Dan, who is still smug about it and rubbing it in.  And making me tell everybody we come across in real life.

Two-Drain also removed... two drains, leaving me with... two drains.  I'll see his partner next week to see if the other drains can be removed.  I now have little strips of surgical tape across the incisions, instead of one long strip over the length of it.  And I can do my little exercises but he said to take it easy.  It won't pull out stitches or anything, it'll just make fluid build up and the more fluid, the longer I have to keep the drains.  I hate sleeping on my back so I'll be gently stretching and walking like a mad woman for the next week.   It's really yucky weather today and I'm not sure if I want to get all wet.  I may do a little mall walking today - me and the senior citizens at Town & Country.

22 September 2011

A body at rest tends to stay at rest, a body in motion tends to stay in motion.

Wow, I feel almost human today after a shower.  I'm taking yesterday as a lesson on the abuse of prescription drugs.  I really didn't need the narcotics for pain relief, I just wanted to sleep.  I felt like crap for a whole day plus afterward. But I'm not really sure why I feel like crap.  Is it post-surgery healing?  Ennui? Stress?  Or the fact that up to last week I was walking 30 + miles a week and now, nada.  I'm so thankful I thought to step up the program because I really feel it's made a huge difference in my strength and sanity.

Pain hasn't really been a problem.  One would think that this sort of thing would hurt a lot but what I'm feeling is more akin to discomfort.  I occasionally get a twang that surges through some pissed-off nerve but I assume that will calm down with time.  I'm sore like I worked out too hard, and it is unrelenting, but not unmanageable.

Basically I feel better when I get up and out so I will resume my walking tomorrow.  I may eschew hills, as that puts a little strain on my core, but there's no reason why I shouldn't relieve my boredom and lethargy by getting out and doing what I like to do most.  Likewise I was released to start my therapy - post-mastectomy exercises - today, so I can enjoy the pleasures of recreational stretching as well.

I did see both of my surgeons today, and I'll have to detail that in a later post.  I still need to digest some information and even though I was really good and had ice cream afterward, it kind of wiped me out.

A word about the pain ball:
The OnQ pain ball I had was a small double catheter laid under the skin attached to a pressurized ball full of topical numbing agent.  It automatically washed the surgery area with the numbing agent 24/7 for 72 hours after surgery.  Basically I couldn't feel anything.  It wasn't until my pain ball ran out that I started to feel the funky tingly area down the back of my left arm.

21 September 2011

Ups and Downs


So much for a great day on Tuesday.  I've been resting as I should - I sleep when I'm tired and stare at the ceiling when I'm not.  I liked getting out of the house and going for a walk because I am going stir crazy.  My legs and torso can take the walking, but unfortunately I've been pushing and pulling and reaching a little too much and my surgery zone is not feeling very well.  So Tuesday night and Wednesday I opted for the vicodin and ativan and I felt like crap all day Wednesday - nauseous, dizzy, listless and sluggish.  I'm now back on the ibuprofen and looking forward to resuming walking, but no pushing, pulling or reaching.

Tuesday my neighbor, the oncology nurse, came by and removed my pain ball catheter.  I'd liken it to feeling like a piece of celery being peeled.  Weird to feel the tubing pulling out from my neck on one side and my armpit on the other.  My drains are a pain in the side.  The tubes are pulling my stitches a bit and I can't wait to lose one of those on each side on Thursday.  They aren't nearly as gross as I had thought but I hate having to sleep on my back.

I am now getting sharp pains around my incision sites.  They come and go and aren't nearly as aggravating as the constant feeling of tightness around my armpits.  Like I'm wearing a tailored blazer that's too small and the arm holes are digging in.  Another development is the swath of 'fever skin' down the back of my left arm.  It's all numb and tingly at the same time, like I smacked my funny bone really hard.  I'm hoping that it's just inflamed from the procedure and it will calm down, rather than a permanent side affect of Dr. Boob pulling out nine lymph nodes.

Friday's surgery went well, but not exactly as planned.  Whenever a sentinel node biopsy is done, there's a little wiggle room for what will happen.  They shot me up with the dye, but when she got in there she only found two nodes with dye, and then she found a bunch of hard ones and her rule of thumb is to take ANY that she can feel.  Hard nodes indicate inflammation/infection of some kind so once she found some that she could feel she kept going after them.  Ultimately she took nine out.  They came back negative on the first look.

Tuesday brought the pathology report back and some isolated cancer cells were found in one of the nine excised lymph nodes.  Even so, because they were isolated, the path report is listing the nodes as negative.  Yes, I don't understand it either, and that question will have to wait for the oncologist.

There were two separate tumors, 2.1 and 2.0 centimeters.  Those were a little larger than we were hoping for.  This bumps me up a stage... we think.  The margins were negative (clear.)  We will find out more after we meet with the oncologist.  Thursday's appointment with Dr. Boob is just the hand off.

I also have an appointment with Two-Drain on Thursday and I'm eager to get that over with as well.  I think tape and stitches will be removed.  And maybe I can loosen up the compression bra I've been wearing 24/7.  I haven't taken a good deep breath for days.

20 September 2011 (part deux)

Much More (or less) Me

I'm feeling much more me now that the narcotics are out of my system.  Don't worry, I saved lots to get me through the next school holiday.

So what is different?  When I fold my arms across my chest, they actually touch my chest.  That was pretty different the first time.  It still feels like I did too many push ups.  I'm sore around my armpits - my pec majors, pec minors, a little deltoid, levator and lat.  Not too bad, considering I did an incline push up against the counter last night to test my strength.  (Two-Drain said not to do push ups, but I figured a modified one would be ok.)

My ginormous pain ball that was supposed to last 6 days is about toast.  I'm gonna have to mention that to Two-Drain.  I am starting to get some feeling back in the nerves of the back of my left arm, from shoulder to elbow.  It's an electric feeling, like when you hit your funny bone.

My sleeping is back to normal, being woken up every two hours by a kid or a cat.  M woke me up at 1:30 AM to change her bed.  I just replied, "You gotta be kidding..."  I had to boot Dan out of bed to get it done.  I guess incapacitated isn't on the fourth grade vocabulary list.  But it should be!

M wanted to help with the drains this morning.  She made it through 2 and a half before she decided she was going to throw up.  OK, not a physician.  In fact I'm not so sure she could even be a plumber.  We're hanging our hat on N.  I'm going for a walk today because I want to sleep and I'm doing so little my body won't let me.  (Unless I drug myself.)  A nice flat mile or two is in order.  My legs feel great.  I'm so glad I stepped up (ha ha) the fitness routine before going under the knife.  I'm working to get back there as soon as possible.



Dan came down this morning and started poking through the DML bags I requested.
"What's that?"  he says.
"It's a Russian Tea Biscuit." I answer.
"Can I have one?" he asks.
"No, it's only for people who have had body parts cut off."
(It was worth a try...)

So for breakfast I had half a Russian Tea Biscuit, 2 colace, 2 doxycycline, 2 ibuprofen, one zoloft and a liter of water.

20 September 2011

Post-Post-Op

In the last couple of weeks I've had some very good massages. I've been working with a gal recommended by a friend (Thanks, SSD) who has kindly unwound most of my back and worked the stones out of where my calf muscles are supposed to reside. In spite of taking several days 'off' from walking last week, I still managed over 30 miles, but since most of those miles were between Starbucks and home, I gained some weight. I'm ok with that for now. We'll address it after I find out if I need chemo or not. This is a valiant attempt to prepare my body for being laid up for a few weeks. I don't think I'll be able to handle Schantz hill for a while, but if I hitch a ride up to the track I think I'll be able to shuffle around it a couple of times within a week or two.  My legs feel strong, my arms feel tight and my chests feel like there are elves sitting on it - and not those cute little Keebler ones, more like big, hairy, stinky ewoks.

I'm going to work on having some guest posts done.  I'm sure Naomi would love to regale you with tales of the blood bags, and Kim would like to work through why I do things the way that I do instead of the way she does,  and Dan has all sorts of theories he'd like to expound upon.

I'm tired and hitting the hay.

19 September 2011

Home again, home again, jiggity jig

On Friday mid-morning Dan and I moseyed on over to Kettering Hospital. We packed light in anticipation of a short stay. I had taken a klonopin the night before so I was well rested. Wow! that was the right thing to do.
They took me down to surgery, but I don't even remember being wheeled out.
Next thing I knew I was waking up nauseous. I spent a little bit more time in recovery than they were expecting, and a little more time in surgery than they were expecting.
Both of my surgeons were pleased with how my procedure went. I have followups with them on Thursday.  Thursday could be greek to me.  Time is drifting around me and my pain schedule. The OnQ pain ball is numbing the entire area and that's a very very good thing.  Where I do feel pain is in my pecs, lats, shoulders and traps.  I imagine if it did 45000 pushups one day, this is what it would feel like the day after.
I am tethered to two drains on either side of my incisions and also have a pain ball catheter inserted.  I'm mostly catnapping around pain med schedule and other stuff going down.  Kids are cooperating with Kim and Dan, although N has a morbid curiosity and wants to empty my blood bags.

For some reason I was given the presidential suite at Kettering. I assumed it was because they knew how awesome I am and so I wouldn't be hanging around.

I am eager to start walking again.  Both doc's said I could do what I felt comfortable doing to I think I'll have Kim drive me most the way up to Starbucks, stroll around the grid for a while and hop back in the car for the downhill.  Not much upper body action, but I feel like I could walk a flat mile.

No images today.  Too tired to continue.  I'll check in soon.

18 September 2011

It's Cancer Limerick Sunday!

Mastectomies at the behest
Of the surgeon I thought was the best
I have to admit
It sure feels great to git
That awful big weight off my chest

17 September 2011

From a different perspective

I am scared. Mama may be fortunate enough to not get chemotherapy (I spelled that myself), but I still feel bad for her. At least her surgery went well.

Right now Mama is falling asleep, so I am posting this blog all by myself.

I am twitching my fingers and lips, bouncing my knee, and slightly narrowing my right eye, which means I am nervous. But I am not quite sure what my narrowing eye is about.

Mama just woke up, but now she is asleep again.

Speaking of that, I am kinda tired.

From Mama's beloved 9-year-old,
Miriam,
Moo,
Or otherwise known as
Mim <3

P.S. Good luck Mama. ; )

16 September 2011

Boob Voyage

Wednesday night I had the great pleasure of gathering with many of the terrific women who are offering me support.  They hail from several areas and times of my life.  I marveled as I looked around the room and realized how diverse in personality they are. And I feel so blessed that I know them all.  It was a lovely evening and I'm so glad I'm weird enough to have thought of having a "Boob Voyage" party.  We ate, drank and made merry and while I did see some weepiness, it did not put a damper on the evening.

This cancer thing has turned out to be... I don't know.  I was going to say complicated, but it's not.  I was going to say a mixed blessing, but so far it's all been good, baby.  I'll refrain from saying I wish everyone could have what I have, although I do wish everyone could feel how truly loved and blessed I feel right now.
I am finding it so hard to put into words how right this feels for me.  For the first time in a long time I am content and at peace.  But this is the calm before the storm.

Cancer and I have been coexisting peacefully in the same body for a while now.  It hasn't really bothered me, and I haven't really bothered it.  But I am aware that it has an ultimate goal of pushing me out of the place we both share. Like most parasites, it is stupid, eventually killing the host in its quest for real estate.  The longer it stays, the stronger it will get, so it is now my time to start my war.

I'm hoping for a short one.  Me and my team are hitting hard and fast today.  One would think just removing it would be enough, but sadly, it is not.  It would be if I was a lump of cheese.  You know when you have that brick in the fridge and it gets a little mold on the outside and you cut it off and voila! it's perfectly good cheese again?  Well, when I find moldy fruits or vegetables in the fridge I throw them out.  I don't feel safe just cutting off the mold because they have a circulation system and some of those yucky mold spores or toxins that the mold produces can spread to the seemingly healthy parts of the fruit. And evidently the oncologists of the world feel the same way.  

I know I'm not able to imagine how bad it is going to be.  (Like trying to imagine the pain of childbirth before you push something the size of a small watermelon out of your hoo-ha.)  And thankfully I'll probably not remember the agony after it is all done. (See above birthing reference.)

Humans are nothing if not adaptable and resilient.  We are smarter than a stupid old parasite.  Our strength increases exponentially when we join in harmony.

Medicine has come so far, and continues to do so.  My doctors are good at what they do; they have experience and skill.

We caught my cancer early, (thank you, askew left nipple,) and it is not an overly aggressive type.  I am otherwise pretty damn healthy.

I have lots of folks to help take care of me and my family while I concentrate on healing.  We have so many resources at our disposal.

I don't feel like I've accomplished what I need to in 'the grand plan'. I have a 7 year old and a 9 year old who need me.  And a 46 year old.  I'm not done yet.

I realize I cannot hope to be fully prepared for this, and I accept that.

Amen, and amen.

Post Script:  Dan will post updates on my facebook account while I am otherwise indisposed. 

15 September 2011

Silver Linings

A few weeks ago I wrote about the good things about my tumor. But there are other bigger better things to gain from this challenge.  I'll expand on that to tell you what gifts I feel I'm going to wrest from this wretched cloud.

Gratitude:
I have many blessings in my life. I was going to try to list some but they are ALL so important to me now that I feel I can't leave any out and quite frankly there are too many to list.

Revenge:
I've lost loved ones to this disease and I'm going to relish kicking its ass.

Health:
This may sound counter-intuitive, but really, now that I have this hanging over my head, I'm going to work harder at lowering my risks.  Extra weight and a bad diet are both risk factors.  I'll be addressing that.

Patience:
This is a tough one. I've always felt I needed more patience. First, Dan entered my life, and he was a real challenge for my impatience. Then I had kids and it became clear very quickly that what little patience I had nurtured through my interactions with Dan was quite inadequate. Especially since one of the kids was exactly like him.

Whether it's test results or a doctor's appointment where I can have my questions answered and be given options to review, I MUST wait before I can move forward. And remember, I'm kind of a ticking time bomb, so this is a delicate balance.

Balance:
I'm sure this will eventually become clear to me. I am a black and white linear thinker. I'm not there yet on how cancer will change that. I just know it will. Perhaps the fact that I'll be fighting this disease for the rest of my life will play into it. There is no cure for cancer. By definition, I cannot be cured. I can only stop the disease and hope that it never starts again.

Perhaps it will be the ability to finally see the big picture, instead of the details.  Being able to let go of folding the towels just-so, and just get them folded. (Or accept someone else folding them.)

Love:
A far deeper appreciation of my spouse. Nothing makes your love for someone as clear as a death threat.

Life:
A far deeper appreciation of life. Nothing makes the importance of life as clear as a death threat.

Strength:
Does one gain strength through a challenge or has it always been there and just show when tested?  I'm not sure, but I have surprised many (including myself,) with my ability to cope with this.

And last, (for now, because I'm sure I'll find more as I progress,)
Fearlessness:
I used to live in fear of doing something wrong, because I didn't want to regret something I'd done. What I didn't realize is that far more regrets spring from NOT doing something. I look back on the opportunities I HAVEN'T taken. I look forward to taking advantage of future opportunities, because time is finite for me now. I ultimately may not have less time than you, but I feel a sense of urgency now that it has been threatened. I will take more risks, I will enjoy things more.  I will.

14 September 2011

Reconstruction

It appears we have some questions. Yes, you in the third row. What's an expander? Did everyone hear that? No? I was asked "What's an expander?" Well that is an excellent question and now I have a lovely segue for the topic of reconstruction.  I wasn't going to go into this yet but now is as good a time as any.


When I was first diagnosed I wasn't sure what my course of action would be. I knew enough from my mom's experience that I did NOT want a lumpectomy. I was leaning towards a double mastectomy when I heard the words, "Your biopsy was positive." Having said that, and being somewhat of a contrarian, my first thought was to NOT have reconstruction. I did a lot of reading - blogs, and articles. And it took a while but I decided some time between meeting with the first plastic surgeon and second plastic surgeon that I would go ahead and have reconstruction done.  As much as I have expressed some trepidation about the double mastectomy, I have no doubt that it is the right decision.  It's the actual reality of the major surgery that I nervous about, not so much the idea that I'm losing my boobs.  For sure, it's a huge decision, and one that is irrevocable.  (Once done, there's no going back.) But from the moment they threatened my life, I knew what I had to do.

Some of the things that affected my decision:

How would the kids react to seeing me with no boobs? It's bad enough that I may not have nipples, which will still be alien to them, but if I do reconstruction, at least I'll look 'normal' to their friends.

And along those lines, how will society treat me as a woman with no breasts? It's like a red flag saying "HEY I HAD CANCER!" And while I feel no shame in saying that, I would still like to move beyond this episode in my life. I won't have any feeling in them, they will no longer act in a sexual manner at all, they won't contribute to titillation, (see, did you snicker??) so it will definitely be a BC/AC clue. (Before cancer/after cancer.) I'm going to feel very different, even if I look the same.

My frame is small, but I'm muscular and I have broad shoulders and once the extra 30 pounds of baby weight (yes my 'baby' is seven - shut up!) is gone I worry that my body will look out of proportion.

I think the bottom line is that things will be different enough without having to contend with a stark physical reminder. I don't think I can handle both feeling different AND looking different for the rest of my life.

So on Friday, when I have both of my breasts removed, Dr. Boob will hand-off to Two-Drain and so she will open and he will close.  Before he closes, he'll clean up any severe lumps and bumps left by removal of the breast tissue and he'll put saline implants in under my pec major muscles.  The implants will not be full of saline. I will periodically over the next few months, (working around any other treatments, of course,) visit Two-Drains' office and have more saline added to stretch out the muscle and skin for where my new "foobs" (fake boobs) will go.  Once I am all healed, and the tissue is stretched out to where I want it, (size of new foobs,) then I will be scheduled for a second surgery where they will make a new incision and exchange the expanders for permanent saline (or silicone) implants.   Then after that is healed there is the incredibly odd question of whether to have nipples made or not.

Last Friday I heard from Two-Drains' office and I'm scheduled to sign consents and get my graffiti Thursday. He will draw the map so Dr. Boob knows where to cut and what skin to take. I think they use Sharpies. I hope they don't use pink but I would like to see something other than black. They can't use red (for obvious reasons,) and the radioactive dye is blue so that's out.


A word about comments:   I read them all.  Sometimes I publish comments, sometimes I don't, depending on the nature of each individual comment.  If I choose to not publish, it is no reflection on you. 

13 September 2011

I Look Maaaahhvelous!

I'm feeling and looking pretty good these days. Evidently I should have cut my hair off years ago. Folks keep telling me it looks great.  I'm getting lots of exercise, I'm ridding my life of stressors, I'm eschewing responsibilities in favor of naps and massages. All things that contribute to my aura of well being. In fact, I've felt better in the last few weeks than I have in years.  Sometimes I feel like if I could just suspend time I'd be fine - kind of continuing on in this waiting-for-surgery mode, taking care of myself, accepting help and prayers from others, I feel like I could do this indefinitely. Unfortunately, people are gonna get pretty sick of coddling me, and oh yeah, the cancer is still growing.  Having cancer isn't half-bad... fighting cancer is going to be the kicker.  I find it incredibly ironic that all this well-being and marvelousness will cease once my medical team actually tries to get the cancer OUT of me.

Surgery is not nice. It kind of pisses your body off when you have bits removed. Like "Hey, I was using that! What the hell do you think you are doing!?" so I'm going to have to suffer the wrath of my chest trying to figure out what happened to the boobs that were there yesterday. And surgery comes with risks of complications - infection, saroma, scarring, residual pain, unintended consequences.

And I still have a big stepping stone ahead of me - the results of the surgery.  First, will the margins be clear?  Will my surgeon be able to remove the cancer without a shadow of a doubt?  Chances are good there since I have big boobs and the cancer is right under the skin.  Second, have any renegade cells leeched into my lymph system?  Short answer will be found while I'm on the table, but chances of a false negative are high with a quick look.  We really won't know until the nodes get cultured in a lab and someone has a good long look at them.  It'll take about 5 business days.  Then I get to move on to the oncologist.  I still really don't know anything about my follow up treatment beyond Tamoxifen.

As my surgery date looms, I am becoming more nervous about this whole thing.  Sitting in Dr. Boob's office a month ago, it was easy to say "double mastectomy."  Three days out it doesn't feel that easy anymore.

12 September 2011

It Takes a Village

Everyone handles their own cancer in their own way.  I know people who thought of it as a deeply personal journey and were comfortable navigating on their own,  I know people who leaned heavily only on family and very very close friends and left the rest of the world out.  I don't do mine like that.

My philosophy is that it takes a village.  So I'm damn lucky I live in one.  When someone in our midst is stricken with an eeny-meeny-miney-mo kind of illness like cancer, it feels good to do a little something for them as a token, prayer or insurance policy against but-for-the-grace-of-god-go-I.  Having not had to deal with this before, I never realized how overwhelming the prospect of total debilitation is. You can bet that when I'm feeling better down the road I'll be helping out others in a more meaningful, well informed way.  It feels pretty good that I now have this knowledge.

When I tell people I have cancer, (and let's face it, I tell everyone,) the most common response I get is "I'll pray for you" or "You'll be in my prayers." I've got Baptists and Catholics and Jews (Oh, my!) all praying for me and I figure the more the merrier. May as well cover all the bases. ;-)  I believe in the power of prayer, but in a rather Jewish, practical way.  Pray as though everything depended on G-d; Act as though everything depended on you.  So my name is on the misheberach list, but I'm also going to the best breast surgeon I found and following an aggressive course of treatment.  You know, covering all of my bases.


It's hard to ask for help, not from the I'm-too-proud point of view, but more in the vein of I-don't-fold-my-towels-like-that. It's often harder for me to analyze and describe what I want/need than it is to just do it myself. Patricia is going nuts because I won't give her any specific needs (what/where/when) so she can match volunteers to them. And being the micro-manager that I am, having people mixing my nylon/silicon/wood cooking utensils in with my metal ones is going to drive me ape shit. But I'm going to have to let it go because I sure as hell won't feel like cooking.

I find no shame in having cancer.  Even if its a 'private' body part.  So I don't feel shy about people knowing.  I have a slight twinge when I say I'm having a double mastectomy and they automatically look at my chest, but that'll stop after the surgery when people feel they have to muster the self control - "Don't look at her chest, don't look at her chest, don't look at her chest!"  And don't worry - if you do slip up and I catch you staring at the alien shape of my expanders, it's not like I'm going to post your name on page in the blog.  (Even if I do like the idea.)  Yes, they kind of look like grey-scale fried eggs.  

11 September 2011

It's Cancer Limerick Sunday!

About to go under the knife
A mother, a sister and wife
To the ta-tas, ta-ta
I doubt I'll miss 'ya
When faced with no boobs or no life

10 September 2011

Men and (Womens') Breast Cancer Part 3

I feel the need to wrap this thought up, even 'though it's far from worked out in my mind. I just don't want it hanging out there and I feel like I'll have to do much more research to finalize my thoughts on it. I mentioned how men don't talk to me about this, not even good friends. A friend commented that guys just don't operate like that but I think that is way too generalized. I know many compassionate men who reach out to others in times of need. So while my first two posts on this subject focused more on men and breast cancer, this one moves more towards men and how they react to women who have breast cancer.

Men are just uncomfortable talking/thinking about breasts if not in the context with which they are familiar. Boobs are synonymous with sexy. Breasts have been completely sexualized - so much so, that breastfeeding is frowned upon in public and gives some people the heebie-jeebies when they see it. (Yes, I was quite the lactivist.) I think this is all tied into the (hypocritical) puritanical stance our culture has towards sex. Good gracious, even the word titillate will make grown men snicker. I have such a hard time understanding why it's ok for teens to see people blown to pieces, but if a naughty bit is shown the moral majority goes ape-shit. And yet the sexualization of women is encouraged to the point of ridiculousness. Take a look at this picture. How does this happen? Who could possibly think this is a good idea?

And what's up with associating sex with 'naughty bits', 'dirty', 'nasty' etc. Do you know how hard it is to teach a seven year old girl to love her body, (but only in private because we don't do that in public?) Talk about mixed messages. And don't even get me started on padded bikini bra tops and thong underwear for 8 year olds.

Too many ideas swirling in my head - not enough brain power to sort them out. 'Nuff said.

9 September 2011

Do I have sleep apnea?

It's been a slow week in cancer-ville so I thought I'd do just a little update on what happened this week. Since I set my surgical team and date last week I've just had a couple of items to take care of. All of the testing is done, so I just have to wait around until my big day.

The hospital called yesterday to take my health history and do my pre-registration. The nurse asked me some questions so the anesthesiologist has a better idea of how I'll react to the general anesthesia. Aside from detailing every surgical procedure I've ever had from removing a bone in my foot at 12 to my endometrial ablation a couple of years ago, they ask about sleep apnea... a lot: Do you have sleep apnea? No. Do you have a c-pak or breathing apparatus or oxygen while you sleep? Like, you mean for sleep apnea? No. Have you ever had sleep apnea? No. Do you have trouble with stopping breathing while you sleep? Um, no, I don't have sleep apnea. Do you snore? Yes. Does your husband say you stop breathing while you sleep? No. Have you even awoken from not breathing? No. And this went on for about six more questions, like she was trying to trip me up or something. It was like she didn't believe me because how would I know if I had sleep apnea or not since it happens IN YOUR SLEEP!

Enough of the inane.

So this morning after I dropped off the kids at school, I kept on walking, as I like to do. I walked down (or up, depending on how you look at it,) to Starbucks and met the 'other' high profile cancer mom with kids in my school. (Based on sheer numbers, I assume there are more, but we seem to be the most vocal about it.) Sara and I come from different places, and are at different stages in our journeys. We are also headed in different directions, but right here, right now we are intersecting in a rather harmonious way. Her blog is here: Tablegrace. It was really wonderful to talk to her.

The other thing I did this week was find a venue for girls' night out next week. I'd like to say hey to my homegirls before I am out of circulation for a while. So next Wednesday it's Ta-ta, Ta-tas, with Tapas. If I missed you on the FB or email invites, no worries, just let me know and I'll get you all the details.

So many people have asked how they can help us out as I go through surgery and beyond. If you wish to offer support, please send an email to suchangels@gmail.com with whatever support you wish to offer: meals, errands, shlepping kids, laundry, grocery shopping, child care/play dates etc. You will then receive instructions on how to access our handy-dandy Cozi calendar for scheduling all of the above. Patricia Young has graciously offered to be my volunteer coordinator. She'll be matching resources to needs. I have such awesome friends! I love you all!

8 September 2011

Men and Breast Cancer Part 2

As you can clearly see, I'm having trouble wrapping my head around this. Yesterday's post was sort of a half formed thought, and today's kind of veers off subject. I think this is part of the bigger issue I'm attempting to sort out which is really, our culture's take on breasts.

=====
To continue...

It must be nigh impossible for men to deal with this disease. I can't imagine a man finding something and going to his doctor like I did, complaining about his nipple looking funny. What kind of resources are available to men fighting this disease? I'm assuming there are groups offering help and survivors willing to talk with those facing their cancer, but nothing like the web of support available to women. It's a broad sweeping generalization to say that women are more nurturing, yada, yada, yada. I think there are other plausible reasons why support is so prevalent.

First, Breast cancer is extremely common for women and so there are a lot of survivors who want to pay it forward. Second, it's a crap shoot - I have it today, you might have it tomorrow. It strikes whoever/whenever/however. I think there's a little 'but for the grace of g-d...' going on. And third boobs are so closely associated with sex, specifically women's sexuality, that the whole topic makes men (and some women) uncomfortable. This harks back to my I (heart) Boobies post. It's cute and funny to say feel your boobies, but where are the 'Feel your balls' bracelets for testicular cancer awareness?

Sometimes it's ok to make light of a situation to dissipate discomfort. It's much more pleasant to laugh with instead of at something. And lord knows I am the queen of irreverence and candor when it comes to me and my cancer. My mama taught me, "Laugh and the whole world laughs with you; cry and your mascara runs." But it's hard for men to laugh with us, not very many of them have a dog in this fight. (Or if you want me to go with the cheap pun, 'puppies in this fight'.) And so the 'Save the Ta-tas' support rings hollow. How would they feel if I went to Cafe Press right now and designed a "Save the Testes" shirt? And again, I digress, as this is not an either/or, he/she argument.

I recently spoke with someone whose uncle had breast cancer. The story she told saddened me and I even found myself feeling some shame about how men have so much more to face when they get this disease. It's easy to fight when EVERYONE is on your side. It takes much more bravery, wherewithal, and grace when marginalized.

7 September 2011

Men and Breast Cancer - Part 1

I feel really sorry for men who have breast cancer. It is an extremely small percentage of cases, but it is a disease that has such a strong feminine association. I find myself wondering what, (if any) accommodations are made for men who face this. Are there blue pamphlets for them?

This has been highlighted for me as I realized this week that men don't talk about breast cancer. I don't have very many male friends, but those who now know my situation have been silent on the whole subject. I haven't had any other serious illnesses but it's made me wonder if I'd had a heart attack if more men would have reached out.

6 September 2011

Reality is Crashing In

When I was first diagnosed, I couldn't see or hear straight. My mind rushed forward, even 'though I had been suspecting it was cancer from the moment the ultrasound tech found it. But thinking you have cancer is very different than getting a positive biopsy result. Once you have cancer, you can never go back to not having cancer.

I have had a constant visible reminder of my cancer. My left boob looks different, funny, not right. After the biopsy, I could really feel the tumor. It hurt from the inflammation of the biopsy. That has calmed down somewhat so that I only feel it when I have pressure on it. (It hurts.) Today when I got out of the shower it was chilly in the bathroom for the first time in months. And I looked down and lefty looked normal. And I caught myself thinking, "Hey, maybe there's nothing wrong with me. My boob is back to normal." It was only a moment before reality came rushing in.

I have cancer. In less than two weeks I'm having my breasts amputated in an effort to rid myself of the active tumor and lessen my risk of recurrence. I still feel everything is going to be ok, but it is definitely NOT going to be the same. I will be on pins and needles for the rest of my life. Every time I feel ill, I'll wonder if the cancer is back. Aches and pains, (and I'm starting to get a lot of them,) will never be routine. I'll not be eligible for life insurance. I'll have foobs (fake boobs) instead of boobs.

I have chosen a pretty aggressive course of action because a breast cancer recurrence killed my mom. I know it's the right thing to do. I know so much that I haven't given it a second thought. In fact I haven't thought of it at all. And now I'm scared.

I don't know how this is going to make me feel. Less feminine? Less sexual? How will my husband and children react to seeing me naked? How will people react to seeing me with foobs? Will I forever be explaining that this wasn't a frivolous cosmetic upgrade, rather I HAD to have my boobs worked on? Will I mourn my boobs? Will I resent my new ones? Will I resent my friends for having 'real' ones? I have no frame of reference for this.

Will I have positive lymph nodes, requiring chemo? Will they find that the cancer has spread beyond my breast tissue? Will Dr. Boob be able to get it all? Will I be able to handle chemo and radiation if I have to get it?

Of course, overshadowing all of this is: Will what I'm doing save my life? I'm trying to dismiss these other questions and focus on the big picture. It's hard to do.

5 September 2011

Save the Ta-tas


Of late, it has become fashionable to trivialize and sexualize this disease under the guise of raising awareness. I used to think those cute t-shirts were ok, too. But now that it is more personalized for me, I understand better how that sort of product does nothing to further awareness or help in any way. People love to wear "Save the Ta-Tas" shirts but would they wear one that says "Opt for a bi-lateral mastectomy to lower your risk of breast cancer recurrence."

Breast cancer is a "women's issue". And it's hard for me to understand the male perspective without projecting, but I really feel these campaigns come from the male perspective. I have no beef with raising awareness. That movement has done a ton of good for fundraising and funding research, thanks in part to the massive amount of non-government funding from private foundations and others - Avon, Susan G. Komen, etc. Breast Cancer takes the biggest bite out of the National Cancer Institutes budget as well. So raising awareness is good. Then again with the incidence also skyrocketing, it would be hard to ignore.

The type of awareness that needs to be spread is that there are gene markers that mean almost certainly one will get breast cancer in their lifetime, and that other types of cancer also have an elevated risk. That there are tests available to determine if one has that gene mutation. That often, the first bout of breast cancer, if caught early, is non-fatal, but if it recurs, it is much more likely to kill you. That women are whole even without boobs, that hair is inconsequential and that cancer is completely utterly incurable. You can stop it and hope that it will never start again, but that's the best one can hope for. (Life insurance companies know this... one cannot get a policy if diagnosed with cancer.)

Raising awareness of screening is also good, but what is being taught would have killed me. For women like me, a mammogram is not really the answer. My mammos from two weeks ago still look clean. Women with dense breast tissue need to be taught to be extra vigilant. Likewise, with the placement of my tumor, it can't really be felt. So a self-exam would not have found it. Women need to be assured that any visual change needs to be investigated. Even if it hurts, because sometimes, cancer can hurt.

For the younger generation, who feel invincible and immortal, it's about the boobs. When young women get diagnosed, they often opt for a less aggressive protocol. They want to save their boobs or hair. And that is really the beef I have with the current campaigns. The sexual innuendo of "Feel your boobies" or "I (heart) Boobies" is apparent. For those of us about to lose a part of our bodies that our culture worships as a proxy for feminine sexuality, it's a slap in the face. It really isn't about saving the ta-tas... it's about saving the life.

Two articles that say it better than me:
Felicia Powers

Peggy Orenstein

4 September 2011

It's Cancer Limerick Sunday!

There once was a girl from Nantucket
Who said to her cancer 'Go suck it!'
You picked the wrong tit
Ima fight you like shit
'Cuz I will not be kicking the bucket.

2 September 2011

More Nuts and Bolts

Today I had my second meeting with my Breast Surgeon, henceforth known as Dr. Boob. (No reflection on her competency, but I wanted to afford her a little more anonymity.) She had news for us. First, my tumor is HER2 negative. This is good news, because HER2 is a marker for aggressiveness. So the oncotype of my tumor is the best I could hope for: ER positive and HER2 negative. It's the most common, best known. Second, the MRI shows my right boob is clean. So they won't have to do a sentinel node biopsy on the right. The MRI found another tumor in the left boob, but it is right behind the first one, which is very close to the surface, so I have plenty of room behind it to assure a clear margin. (The tissue left behind.) I'm already opting for a mastectomy, so this really has no bearing. The MRI also showed some activity in the nodes, but she said it did not look like cancer, just some inflammation either from my two bouts of ear infection/bronchitis in the past 5 months or my ongoing hay fever.

We spent a lot of time grilling her about surgery and talking about the two plastic surgeons I had seen. She told us her experience with both of them and gave us some additional information about the differences in their methods. After considering all the information, I (with Dan's blessing) decided to go with Two-Drain. Let me explain....

When I first met with him, he rubbed me the wrong way. However it is quite possible I just was not ready to hear what he had to say. I had been hoping to avoid an implant, and he said I wasn't a candidate for FLAP. (Where they use my own tissue.) The second opinion was the same. He also assumed I was going to want a reconstruction when I hadn't yet wrapped my head around it. The second opinion was the same, but by that time I had made up my mind. Thirdly, he came off to me as terse. Dan took it as fact/science based. The second reconstruction surgeon was much more it's-whatever-you-want-you-are-in-charge, which at first blush sounds great, but she's the one who has been doing this for 20 plus years and I've never done it and we could really use some recommendations from her as to what works and what doesn't. Two-Drain explained what he wants to do and indicated he does it like that based on his past experience. After Dan and I discussed it again today. I agreed that his method sounded safer for me. (And Dr. Boob agreed.)

So we are still on for the 16th, but with Dr. Boob and Two-Drain.