My account of life both on and off of two wheels...... "At least I'm enjoying the ride"

Saturday, December 29, 2012

Recovery Mode.

The surgery went as planned and while I was quite groggy, I was sent home that very afternoon. 
I had both implants removed, extra skin was cut out and I was sewn shut, laterally.  The stitches run about 4 inches across and maybe a little longer on the left side.  The left side is a bit more indented as well but not as bad as I thought it might be.   The radiation damage is quite evident.  I had two drainage tubes placed, one on each side.  The tubes came out 4 days later because it seemed to not be draining enough to require them to stay in over the holidays. 

We are still waiting on the final pathology report and with the holidays, it is more delayed than usual.

I have been feeling really well and have hardly required any pain medication after the first day or so.   I had a couple rough mental days but a lot had to do with the effects of the anesthesia.  That stuff messes with my head.  I have really just been more tired than anything. 

Of course with my luck, my left side with all the radiation damage has decided to start building up fluid. This is common and usually the body can absorb it but in this case, it had to be drained this past Thursday.  I am now required to wear a compression binder wrapped around my torso.  It is quite uncomfortable and I must wear it day and night until I see the doctor again on January 2.  The fluid seems to be returning again despite the compression.  I just hope my body figures out how to disperse this extra fluid on its own.    It is not necessarily dangerous.  It is just really annoying and could cause me a longer recovery period with repetitive trips to the doctor to have it aspirated. 
So far, the new ‘look’ has not bothered me very much.   I have not had many opportunities to figure out my wardrobe since I have not been going out that much.  The new compression binder is not helping to work this out and is making things more awkward if anything.
The truth is, I feel the most pure that I have felt since this whole process started back in 2010.  It is my body and only my body that I feel when I rest my hands over my chest.  I can feel my heart beat again. The only thing left behind is the reminisce of what cancer did to my body- The scars that will forever tell the story.  The look is quite dramatic but it is all me.

Christmas was quiet and uneventful.  It is a strange time of year to be stuck in surgical recovery mode.  People are busy with their holiday plans and parties so there is a sense of isolation or loneliness.  I have mostly missed being able to ride my bike.  It seems sort of unnatural for me to end 2012 without being able to get a good pedal in.  Even when I was in treatments, I still was able to ride.  

I have to hold onto the good memories of the entire year and not reflect too much on the past two months.  

It will be 2013 before I know it and I will be back in the Pilates studio and back on the bike. 

Here is to a healthy and happy 2013 for all!  

Wednesday, December 12, 2012

Do what will heal you.

I have not shared with many or posted about the details of my upcoming surgery.  I have been trying to avoid being overly influenced by others or their opinions.  I have discussed my options with medical professionals, other women that have had to make these choices and some of my closest friends and family.  Of course G and I have discussed this more than we both would like.  G is my biggest fan and I am very grateful for that.  

The decision process has been more than difficult.  The rescheduling of the surgery was a blessing as I have used this extra time to try and sort out my options and find peace with my choice.
When I made the decision to have a bilateral mastectomy back in May of 2010, I had the option to reconstruct my breasts or wait and delay reconstruction.
“You are young and most women your age choose reconstruction”

 I heard that from many and while I still considered no reconstruction at all, I knew that if I was going to do it, I should start the process right away.  I wanted to get it over with as soon as possible or I may not go back. 

It all seemed so straight forward at the time. 

I was so overwhelmed with all the decisions that I had to make back then.  I had the whole “you have cancer” noise running through my head and on top of it, I had to make reconstruction decisions.  I chose the “easiest” and most common option for reconstruction with the least invasive surgery. 

After finding out that I needed radiation, it was too late.  We had started the process already.   I knew that the results could fail and I could be right where I am today.    I just tried not to think that way.  I still had to get through chemo and radiation so there was no time to think of the “what if” regarding reconstruction.

We pressed on because for some women, the results work even post radiation. I was hopeful that I would be one of those.  
The bottom line is I no longer can just have an implant on my radiated side.  The tissue and skin is so damaged from radiation that it is too unhealthy to hold an implant comfortably or safely.
If I want to continue the reconstruction process, I need healthy tissue to replace what is damaged.

That has been one of the biggest dilemmas for me.  Continue or give up what I started.

If you have been paying attention at all, I am not quick to give up but I do know when enough is enough.   These choices are not as straight forward as one may think.  So much more is involved at this point and all the procedures are ones that I declined from the start and thought I would 'never' do that.  

The only reconstruction options that I have at this point involve having major surgery and taking tissue and muscle from other parts of my body to form a new breast.
The only surgeries that I am a good candidate for is the LAT Flap or a GAP, TUG or PAP flap.  All of these involve a huge recovery and possibly or most certainly weakness from the donor site.  I already have some upper body weakness from the implants and don’t forget my cording issues in my left arm.  Oh and there is also the chance that they too could fail! 

The GAP, TUG and PAP all involve taking tissue from my butt or legs.  As much as I like the idea of making my butt a little small, no thank you!  My legs are my engine on the bike.  These also have a higher risk of failure especially on radiated tissue.

The strongest option for me and what was suggested by two different surgeons is the Latissimus  Dorsi Flap or better known as the LAT Flap.  It utilizes the whole Lat muscle, tissue and skin from your back.  The muscle remains connected and is pulled under the arm and around to the chest to create the new breast mound and replace as much of the damaged skin as possible.  There is hope that the new skin will be able to regenerate healthier skin.  It still requires an implant to match the other side since I do not have a ton of extra tissue to donate and the Lat muscle, while very large is actually pretty thin.   This surgery could help my cording issue or exacerbate it.  It most likely will be a much harder rehab for me and I could end up weakening the integrity of my back. 

I have been on the schedule for the Lat Flap surgery but the idea of this surgery has not settled well with me.  I am extremely concerned of losing strength in my back for obvious reasons.  I am an avid mountain biker that wishes to be competitive again and I am finishing my Pilates training certification.  While the Lat may solve some problems, it could cause more and there is no reversing this.  The muscle cannot be put back where it belongs.   I have had night terrors of waking up on the operating table with my back cut open and muscle hanging out only to be left on the operating table while everyone leaves.
Yes, this has been a tough 5 weeks.   

I have done lots of research and deep soul searching regarding what is the most important to me.  

I was given some really sound advice from a new friend.  “Do what will heal you”
I have come to the conclusion that today, my body; my muscles and a strong recovery from treatments are way more important to me than breasts.  I have already put my body through more than I have every thought I would or could go through.   It is time to give my body a break and give it time to really heal.   Enough is enough.

To deconstruct is still a big surgery but we are anticipating a much easier and quicker recovery.   It sort of feels like I am going through the mastectomy all over again but this time, I know more.  I do not have the same fear of cancer that I had the first time.  Of course there are still no guarantees of how this will look and how I will heal both physically and mentally.  The skin and muscle in my chest has already been stretched.  The extra skin can be cut out but the muscle, while still functioning may not ever lay flat.
I do anticipate having a few moments of grieving and "what the fuck did I do” moments.  Of course I expect many wardrobe malfunctions so I may need to find a good seamstress to alter some of my favorite dresses or just go shopping. But  I will take it all one day at a time.
The most important thing is I choose what feels right and to honor my body for taking me this far in life. 

While sitting in my car at the trailhead with my bike in tow, I spoke to my plastic surgeon yesterday.  I most certainly got the feeling she is not thrilled with my decision but she respects my choice and will help me achieve this goal of getting my body back to a stronger and healthier state that I so desire.   She also reminded me that we can revisit reconstruction at a time that is better for me down the road.

I hung up the phone, unloaded my bike and took a moment.  I felt a bit of weight coming off my shoulders and as I took a deep breath, I looked up.  There he was.  “My” hawk that I have spoken about before.  He was circling the parking lot.  I smiled, soaked in the peace and thanked him for his message as I pedaled into the woods. 

While I am mentally and in turn physically exhausted, I still had moments while pedaling that I could feel my body and how strong it really was.  How hard I have worked to get here.  The implants have only impaired my strength and have never truly been comfortable.  

I actually saw the hawk two more times over the course of my ride.  I do believe he was following me and I like to believe that he was watching over me. Reminding me to look at the big picture- my health and doing the things that make me happy.  

I do understand that I am in the minority with my choice but this seems to be the best way for me to heal myself. 

Finding clarity in the woods.