Reclaiming myself

Though I am very much still healing, I am feeling so good about my body.  This surgery was crazy.  What it takes and the amount of recovery time is extreme.  Going in, I also felt I had absolutely no guarantees.  That is a really scary place to be.  But I also knew I was miserable in the state of my body and had to do something.  Of course there are still plenty of things I plan to do to get my body healthy, but the fact is that I felt broken.  My body hadn't been mine in years.  From pregnancy to cancer to pregnancy to breastfeeding, I had given my body over to "other" in many ways and for many purposes.  I am so blessed and grateful for all that my body has done.  I have carried two beautiful, healthy babies to full term and birthed them with little complication. I fought the battle of a lifetime, poisoning, cutting and deforming and burning/poisoning myself to eradicate the rogue cells that were trying to kill me. Finally, I fed and nourished my beautiful boy on demand for 15 full months.  My body did all of that.  Truly amazing.


My body unfortunately also carried a great deal of extra weight.  And allowed those killer rogue cells to take hold leaving me deformed.  I hold no stock in "being skinny" but as I've written about previously, my weight does affect me in my ability to do the things I desire in the world. Also, when combined with emotional damage of youth, I carry a negative self image, feeling undesirable and unattractive.  This was a hard enough battle on its own.  Adding a deformity from the loss of a breast was a weight I couldn't quite bear.  When I had my mastectomy I never went through a grieving process regarding my breast.  For many women it is a very emotional thing, even feeling that they've lost their womanhood.  I truly never felt that.  But my expander was uncomfortable and never looked even sort of like a breast, even when in a bra.  I had hoped that the implant would be better, both in looks and comfort.  It was better, but barely, and as you know, didn't last.  I felt most comfortable with nothing in (ironically) but still never felt good about myself when I looked in the mirror.  Going into this surgery, I had hoped only to feel ok in clothing and a bra.  I had very low expectations even for that.  I just didn't trust that I wouldn't be permanently externally marked from cancer for all to see.


Today, I put on "normal" clothes for the first time since surgery.  I wore a regular bra (which I had basically given up on since my first pregnancy), a simple cotton shirt, and jeans.  I couldn't have been more thrilled.  Although I am still "big" as far as sizes go, I now have a flat stomach.  And my bra was appropriately filled on both sides.  You would never have been able to tell that I had undergone anything. Although after an hour in said clothing I could feel it in my still healing body, I had a new lightness in my heart.


For lack of a better description, I feel like myself again.  The inside and the outside finally match.  I look forward to continuing on my path of healing and strengthening my body, losing a little more weight and building my muscles so that I can show my children how to live a healthy life.  Fruits and vegetables and reasonable portions to eat, hikes and biking and enjoying the amazing things our home has to offer.  Hopefully this will also open up a few additional options for me to achieve some goals I have in mind- parts I can play in shows, new skills I'd like to learn, things like that.


I am just so amazingly grateful to have undergone this surgery.  I never intended to do it so soon, and was quite terrified of what it was going to take.  What was worse, I never felt confident that it was going to give me enough back to be "worth it".  Today I can say that this was one of the better choices I have made in this process.  I may have felt I was making it under duress somewhat, but it was unquestionably the best thing I could have done.  My surgeon is amazing and I look forward to thanking him properly. He gave me back pieces of myself I hadn't even realized I had lost.

Post Surgery Update

I had started writing this post earlier this week but never made it back to it, so I'm starting from scratch!

Surgery was about a week and a half ago now.  The process didn't exactly start out as expected.  We had been expecting surgery to go for about 4-6 hours (and in fact my surgeon had indicated he thought it would be in the 5 hour range for me).  Well it ended up taking 7 hours.  Then as I was slowly waking up in the recovery room, I hear my doctor talking about my blood flow numbers.  Apparently there was an area in the tissue transplant that wasn't receiving adequate blood flow. So he turned me straight around and took me back in for another 2 hours.  Yep, that would be 9 total hours of surgery.  I was rough by the time I made it back to my room to be sure.  Sore throat, sore body, and drugged.  My mom, dad, sister, brother in law, niece and husband were waiting for me when I arrived at my room.  I think I scared them a little. =)  Nick knew I was in rough shape and could see I was worried about the night, so promised to return early the next morning.  Gratefully I had a wonderful night nurse who really did make all the difference to me in that difficult first night. She was kind, funny, and on top of caring for me.  She even made sure to get me a massage through the complimentary service for cancer patients for that next morning.

Aside from the fact that it is quite literally impossible to get a good nights sleep (or even a nice nap for that matter) in a hospital, my recovery went decently well.  The first couple of days were rough since they wanted me to work towards getting up and moving and my body was just not there yet.  But by day three I was working well towards their goals, and could have even been released half a day early if I'd wanted.  But I knew I wasn't quite ready to manage myself at home and my family definitely wasn't ready to have me home unable to easily make it to the restroom on my own. One more night was perfect.

I arrived home on Saturday and was doing surprisingly well.  After feeling like the bionic woman with an IV, central line (that's an IV in your neck), catheter, leg pumps, blood pressure cuff, oxygen/pulse monitor, blood flow monitor, Doppler monitor, and five drains, I miraculously went home with only two drains in my body. I could walk quite well and wasn't feeling too much pain.

So now, here I am one week post release and feeling good.  I'm weaning myself off pain meds and trying to walk more.  Unfortunately both of those things have left me a little more sore. But my energy and strength seem to be really good.  Also, I'm really happy with my physical results from surgery so far.  Of course I won't know the full results for awhile as the swelling goes down and my body adjusts and heals, but I feel good and like what I see so far.  My doctor also seems happy with the results and several of the nurses told me how great he is (I heard perfectionist used several times). In my opinion, no one knows better than the nurses who work with (and after) the surgeons.

Onward and upward from here! I've been pleasantly surprised at how good I've felt so far.  The trick will be to avoid overdoing it.  I think I may be dealing with that a little bit right now. I am grateful I did what work I could in advance of surgery to strengthen my muscles as I am feeling the benefit of it now.  I just have to keep my focus on eating well (and the sugar/carb cravings I've been having this week are definitely not helping!) and slowly advancing towards getting my body back into motion. I think it may also be time to look into the writing challenge I've been wanting to do.  Something a little more productive than watching trashy tv and movies! lol

The best part of all is that I am starting to experience a little sensation of emotional closure on cancer.  I didn't expect that to be the case for me, but as I "get my body back" I do feel that I am walking away from that process. And so begins 2014- the year of Karey. ;)

Surgery is here

Tomorrow morning, in approximately 9 hours, I will be drifting off to sleep for the biggest surgery I have ever had.  The final major piece in my cancer journey.  I'm feeling nervous about being away from my babies.  And nervous about the results.  I've felt so uncomfortable in my body for so long now, and have only just started to feel comfortable again since both the expander and implant were out.  I hate the idea that I might not continue feeling comfortable in my own body.  And yet, the results could set me further along the path to feeling not just comfortable, but proud.  Here's hoping that is the result!  Although I've spent the week feeling excited, I've been aware of a constant anxiety also plaguing me.  They are very similar emotions of course. I only realized the anxiety was there once I noticed I was stress eating. =)  Well with a few things left to do before tomorrow I'd better get to it, but I am asking for thoughts and prayers and good vibes and juju for a smooth surgery with outstanding results and rapid healing.  Not too much to ask right? ;)

Happy New Year! 2014

Onward and upward is my motto for this year.  Many changes on the horizon and a lot of work to get through them.  I am hopeful that this time next year my life will look significantly different, and hopefully all for the better.  First on the agenda, a month of health.  I am working on a pre-operative diet and exercise regime to prepare my body for my reconstructive surgery.  We are tentatively looking at a date in mid-February so I have a lot to do in a short amount of time.  I need to strengthen my core muscles, and limit any inflammation present in my body.  I also need to wean Gio.  Immediately.  The expectation is that we will be lifting my left side to better match my right at the same time.  In order for that to happen, I cannot have any milk left in it.  Tonight was the first attempt at giving him regular milk without me present for bedtime.  I'm sure it will be fine.  He goes down for others just fine though usually does get some pumped milk.  The real challenge will be weaning him around me.  He doesn't need milk around anyone else, but melts down if he's tired or otherwise needing comfort and isn't given milk with me.

And all that just gets us into February!  Then it will be a long recover process.  Five days in the hospital and a minimum of six weeks recovery at home.  Sounds like full recovery will likely take more like three months.  There apparently may be additional "clean up" outpatient surgeries down the road too.  Fingers crossed that won't be the case.

After that?  Who knows!  I have a lot of hopes for this next year.  I do know it involves dance class for Bella, more preschool, finding some activities for Gio, lots more outdoors and nature play for both kids.  Trips to the zoo and the discovery museum, days at the parks and walks around the neighborhood.

I am setting the intention to find myself this year.  I need more music and performance in my life.  I need to find something regular and structured and productive to do with myself even just a day or two a week outside of raising my children.  I need these things to present themselves to me in a way that I can easily see them and take advantage of the opportunities.  I intend to heal some old hurts, even just a little, and find some more happiness in the small every day moments.

Most importantly I intend to see the world through my children's joyful eyes.  They are magnificent and see the world as such.  I am so lucky to have them and hope to remember that every day.

Surgery

The date is finally set!  Round one of reconstruction is scheduled.  November 19th I will be undergoing an exchange surgery.  This means that I will have my expander removed and an implant placed.  I had really hoped to skip this step and just deal with my (very uncomfortable) expander until I was ready for the DIEP procedure.  If you've been following me since my cancer days, you may recall that the DIEP surgery takes tissue from my abdomen (did someone say tummy tuck?) and build a living tissue breast out of it using microsurgery techniques.  Modern medicine is truly amazing sometimes.  Anyhow that surgery is MAJOR and requires several days in the hospital (ICU actually) as they have to carefully watch the tissue that is moved to ensure that the bloodflow takes and it doesn't go necrotic.  Then of course recovery from there involves my newly reconstructed breast, my abdomen and the other breast which will be lifted to match.  Not exactly something I'm prepared to deal with while I have two young children.  Probably something that will have to wait until they are in school and semi-self sufficient.

While waiting for that surgery didn't sound great either (did I mention how horribly uncomfortable the expander is?) avoiding an "extra" surgery was my preference.  Alas, my expander popped earlier this year.  I thought I might be able to still wait it out, at least for awhile, but I have become increasingly self-conscious of my extreme lopsidedness.  It wasn't good before (I still had to stuff my bra), but now its a joke.  I'm practically concave on the cancer side.  Compared to my still-breast feeding melon of a breast, I look like I'm always turning to my right.

I finally faced my (recent) fear of surgery and will be slaying this reconstruction dragon for now.  Wish me luck!

And for your viewing pleasure- Halloween with the Gauthiers.

Bella Witch- (Elphaba), the prettiest witch I know

The whole family, witch, dia de los muertos, handsome devil and Miami vice 80s something

 

Handsome Devil and Day of the Dead

Change of Plans

I posted a couple of weeks ago that I was planning on having my implant exchange surgery on December 28th.  Today I had my follow up appointment with my Radiation Oncologist.  She is very pleased with how I have healed and thinks everything looks great.  So great that aside from seeing her before having surgery, she doesn't want to see me until March of 2013!!!  Yep, over a year from now!

With that said, she shared with me that statistics indicate a significant decrease of potential risks after six months post radiation.  She isn't worried about my skin- that should heal just fine.  She also said my plastic surgeon is excellent (actually she raved about my cosmetic results even compared to women with their final implant in, and I only have the expander!), and that his willingness to work on me wasn't wrong per se.  However, the main issue is that there is a much higher risk for tissue fibrosis internally.  Essentially I want my expander replaced because it feels like a rock on my chest and I am wretchedly uncomfortable.  However, if the tissue reacts because it hasn't finished its process post-radiation, then I could end up just as uncomfortable with a more permanent rock on my chest.

So after a lengthy discussion trying to weigh risk versus benefit, I have decided to trust my gut that my body isn't ready.  I am still experiencing some swelling from the radiation, and had even tried to do some research to figure out why at least one of the plastic surgeons I met with told me that they wouldn't be allowed to operate on me for 6-12 months post radiation.  Now that my doctor has explained to me what the risk is, and how it fits into the time frame, I trust that waiting, at least a little bit longer, is the right choice.  Although I'm disappointed that I won't be done in 2011, I feel good about my decision.  My doctor also shared with me that the reason I can't have an MRI with my expander (one of the reasons I wanted to have it swapped out) is that they are concerned about the magnet- not me.  There is no risk of the expander ripping through my skin or some horrible other interaction.  They just don't want to ruin the machine, and the reality is that it really won't do that either.  We would also be doing MRIs on my remaining breast, not for the affected side.  So using ultrasound and mammogram (and PET scan if necessary) is more than sufficient.

Although today's appointment changed my plans, it left me feeling much more confident about getting through my next year.  Life looks a little better to me each and every day.

All in a year

I think I've mentioned before that my long term reconstruction plan is to have a DIEP flap procedure.  This is major microsurgery that takes tissue from my abdomen to create a new breast.  At the same time they will lift the other side so that shape and size all matches.  It doesn't make sense to do any of this until after I have finished having babies.  Aside from stretching out my stomach again (hey, if I have to have surgery, at least I can get a bonus benefit from it right?), my unaffected breast will surely change shape, and more importantly we don't know how a pregnancy would affect the abdominal tissue that is moved.  So the question remained- what do I do until then?  I currently have a tissue expander in.  This is essentially an implant that has a port so that it can be put in empty or partially filled, and expanded over time without surgery.  Aside from the hard rubber port that I can feel, the expander itself is really hard and pretty uncomfortable.  Worse than that, I can't have an MRI which is one of the primary diagnostic tools that I am supposed to use for follow up in the next few years.

After my mastectomy my plastic surgeon mentioned the possibility of replacing the expander with a regular implant.  My fear was that then my insurance could deny paying for the DIEP flap procedure.  He told me that if I am unhappy with the results (which we can pretty much expect I will be) that I say so, and they are legally obligated to cover the reconstruction.  With this information I made the decision to do just that.  I expected to meet with my doctor yesterday and plan a date for this surgery sometime in February.  He indicated that I would need some time to heal after radiation before we could consider surgery and due to some other things in my life, February was the next possible option.

Yesterday I did in fact meet with my plastic surgeon.  We discussed the exchange surgery and my options (silicone vs saline, etc).  It is an outpatient procedure that can be completed in the surgery center.  I don't have to even go to the hospital, let alone stay in it!  Plus the recovery should be pretty manageable.  Everything had been reviewed and the last step was scheduling.  Much to my surprise, my doctor said we could do it before the end of the year!

Yes, I know that I am crazy.  This is the worst possible time of year to plan on putting myself out of commission, but the idea of having all of the major medical stuff behind me within the confines of one calendar year is just too alluring.  So we scheduled surgery tentatively for December 28th!  I have to get medical clearance (just saying I am strong enough to handle general anesthesia) and my insurance has to go through in time, but I don't anticipate any issues with either of these things.

Assuming all goes to plan, I will be done with everything before the end of 2011.  I will be happier than you can possibly imagine to ring in 2012.  I have great hopes for this next year!