Some quick updates

First day back on the bike! 

I am back in physical therapy 2 times a week.  My therapist would like it if I could fit in 3 times but I am pushing for just the 2.  The diagnosis is weak at best- mild or slight lymphedema.  A 3% change since my last measurements a year ago.  I may notice more because I feel like I am really in tune with my body, especially when something does not feel right.  I am back to having to wear my compression sleeve on a regular basis and now have to practice manual lymph drainage massage on myself.  It sounds intense but it really is quite easy and only takes about 5-10 minutes.  It all seems to be helping, as the swelling in my arm is actually getting better and you almost can’t tell.  I think a lot has to do with me being back to my regular exercise routine.  I am a firm believer that exercise is the key to keeping a healthy lymphatic system and lymphedema under control.  It will never go away, but if managed properly, the symptoms can be non-existent.  In the grand scheme of things, this is more of a nuisance even with the swelling and pain it causes. 

It has not stopped me from getting back on the bike or back to the Pilates studio.  I have only really had a chance to ride outside 3 times since I was cleared to exercise.  I have been able to get to a couple spin classes which I most certainly need to whip my ass back in shape.   I am feeling the 5+ weeks of a sedentary lifestyle. 

I am still a bit skittish on the trails but I am already getting some confidence back.  No matter what, each surgery seems to take some confidence from me, on the bike.  As for my fitness, there was some major fitness loss but my endurance seems to have held up okay.  I am certainly feeling quite slow but I know it will come back. 

Overall, I am feeling so much better, especially without the implants pushing on my pectoral muscles when I pedal or try to maneuver over an obstacle on the trail. 

I have a lot of work to do but I am up for the challenge. 

S.M. 

Game On!

The last few weeks have been jam packed with work, family visits and many birthday celebrations.  Thank goodness I was so distracted since this has been a very long 5 weeks without exercise!  

Special Birthday visitors. 

Story time with MoMo

Birthday dinner with my guy. 

More birthday celebration...

Smiles. 

My follow up appointment with Dr DP was Wednesday and I was cleared to stop wearing my compression strap and am now free to start exercising.  There is still a tiny bit of fluid on my left side but nothing that should not absorb into my body-I hope.

 

You would think that I would have jumped right on the bike but that did not happen. 

Both my road and my mountain bike are in the shop getting tuned up.  I should have at least one of them back by the weekend.  While there is always my single speed- it currently has a flat tire and I was not quite ready to jump on the single speed, just yet.

   

It was 8 degrees Thursday morning so I opted to head to the gym to try my turn on one of the many cardio machines since the spin class was full.  It was probably better for me to start off slow.  I sort of enjoyed eating my way through the holidays so there is a lot of work to be done on my part. 

   

I won’t bore you with the details of a gym workout but I do want to share something about that morning.  

I was digging through my draw looking for clothes to wear to the gym.  I put on one of my old sports bras mostly for  comfort to protect my scars.  The scars are still sensitive and probably will be for a while.  I put a shirt over the bra and looked down.  I had a moment.  Not the “Oh, what have I done moment” but more of,  “You got this, woman!”.  This was my first time really showing off my flat chest openly where nobody knows me.  Funny thing was I don’t think anyone really noticed and if they did, I really do not care.   I actually felt so much freer while I was exercising.  The implants never felt totally comfortable and I always knew they were there.  This all comes back around to – this is all me!

 

I have been noticing some strange things happening with my left arm.  The cording is still there but it does seem less tight than before.  I know that when I get back in the Pilates studio, I can work on stretching that out some more.  The strange and somewhat disturbing part is the swelling.  It is in my hand, half my wrist and elbow area but my arm just looks bigger than the right one.  I have scheduled an appointment to go back to physical therapy to get reevaluated for lymphedema.    My unprofessional opinion is I already have it ad the compression band around my chest may have just restricted my lymph drainage.  It probably was a bad combination with surgery already being a high risk for developing lymphedema.  But, there was no choice. I am still hopeful that I can get this sorted out before it gets out of hand.   It is manageable but pretty uncomfortable and my compression sleeve just makes the cording hurt more.   

Game on!

I have most of my race schedule on the calendar for this season and registrations have already started to open for some of the more popular races that I want to enter.  I have a long way to go and a shorter time to get back into shape.  I want to attempt to actually be competitive this year so we will see.  Regardless, I have a full schedule of races planned.  The race season starts as early as April so it should be interesting.  I am sure to get my butt kicked but that is okay.  It will not be the first time.  I just have to do the work to build myself back up again.  There is something more rewarding in that than the actual race.    

Thank you for all the nice messages and support.  It is nice to know people are still following along.  

S.M. 

Walk in the woods with my guy. 

Inquiring minds want to know.

I will cut to the chase. 

My pathology report FINALLY came in today and it is all clear!  The delay had a lot to do with the holidays but also they were double checking some funny looking scar tissue- my technical translation.  The pathologists had to run additional stains to make sure that there was no cancer.   I do like that they were being thorough but really glad that wait is over.

Exhale…

I have been going back to the doctor weekly to get my left side drained of fluid. 

Today, the fluid was half of what it was last week so that is good news.  I do not have to go back for another two weeks but that also means I will not have exercise clearance for two more weeks.  Of course my birthday falls within that two week time period but oh well.  I still have to wear the compression strap 24/7 but I am getting used to it and I know this is just temporary. 

I have been feeling really well minus the fact that I still cannot ride my bike or exercise at all.  I am a tad grumpy about it but I can’t change it so no point in complaining (too much).  The scars are healing up nicely and I am more and more comfortable with my new self than I ever thought I would be. 

2013 has started off slow and a little bumpy but I have felt nothing but good energy for the days ahead! 

Happy New Year!

S.M. 

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!  

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. 

S.M. 

Preparing for Surgery.

There has been a slight change in plans.

Surgery is now scheduled for December 17.  I would update you more on what surgery I am having but I am still sort of undecided and this extra time has given me more time to prepare.

Here is the best way that I know how to clear my head and  prepare for major surgery...

I hope you all had a wonderful Thanksgiving.

S.M.

The Unexpected.

My 6 month oncology follow up was two weeks ago.  As I mentioned in my last post, there was no reason to believe that there would be anything to really report about.  Because my oncologist follows the “only scan on symptoms” protocol, I was not worried.  I have been feeling pretty great. 

The thing about the  ”cancer vortex’ is you never truly know what comes next. 

My appointment started off as usual. The nurse took my blood; I filled out my self evaluation sheet and waited some more in the overly crowded medical oncology office where the majority of patients are over 60. 

Dr W was extremely busy – more than usual, but she really gave me her full attention.  She was even more compassionate than I have ever remembered.  We talked about a lot of things- My treatment choices; side effects; my fibroid issues, babies after cancer and my overall well-being. 

Things did not start to get weird until the physical exam. 

Dr W: What is going on over here?  I do not remember this breast being so discolored?! 

Me: Well, it sort of started a few months ago but it does seem to have gotten worse. I assumed it was the norm and it was probably a side effect from radiation, no?

Dr W: I am sure it is nothing but I want you to get an MRI.  Oh and I am calling Dr M (radiation oncologist) over to have him take a look. 

I did not panic; I thought for sure she was just being overly cautious.  I had not seen Dr M since February 2011 (a month after my last radiation treatment) but he seemed to remember me enough to know what he was looking at. 

Dr M: Well, it could just be the implant and some lymphatic blockage but the only way to tell is a skin biopsy.  An MRI is not going to tell us what is going on with the skin. 

Me:  Is this something I can do with my plastic surgeon?  Wait…you are worried it could be skin metastasis? 

Dr M: No, not really but a biopsy is really the only way to know for sure.  Call you plastic surgeon and see what she thinks about a biopsy and the discoloring.

 

Both doctors agreed and they think this is nothing but now the words have been said, documented and I am stuck with following along with all the annoying and scary tests that would follow. 

I was able to schedule an appointment with my plastic surgeon for the following day.  Dr DP would know right away if she could/would biopsy the skin.   

As Dr DP looked me over she asked  me some questions, ran her finger down my radiated skin and then when she touched this one specific spot – I jumped up!   It is a spot that we have been ‘watching’ because the skin was really thin after my exchange surgery due to radiation damage.  I had thought it looked a little worse but this confirmed it. 

At this point, I was now standing up while she began sizing me up and grabbing my waist and my back trying to figure out what she had to work with.  I have been trying pretty hard to lose some of the extra tummy and toning up so she didn't really find much. 

The bottom line is my implant is failing.  This is in the side that was radiated 33 times.  The skin is just too damaged.  The implant is actually starting to show through the skin! That was why I had a lot of sensitivity to the touch.  Here I thought I was just getting my nerve sensation back.

 

The concern is that if we do not take this implant out now and look at alternate reconstruction options, this could end up being considered an emergency surgery and my options just went from 2 to none.

 

The other issue and the whole reason I went to see her is the skin that is turning color.  She brought my breast surgeon in to discuss and have her take a look.  The discoloration concerned her as well but mostly because they both think it is another issue with the implant and the constant tightening and tugging I have going on.  It is contracting and according to the photo evidence, rising higher by the month.  Of course that is causing me great pain but I just thought this was the way it was and I never really complained that much about it.  I just sort of accepted it as the new normal post radiation/reconstruction.

 

We knew there was a chance of this happening if I decided to go the implant route after radiation.  Some plastic surgeons won’t even touch radiated skin with an implant since it is very common for radiated skin to fail.  We took our 50/50 odds and went for it.  We were all  hopeful and thought I was in the clear for a while.  I did not think it would happen this quickly if at all.  It was just a year ago that I had my implants put in.  

The sadness, fear and overall frustration has really taken over on this. 

I had a biopsy last week.  It had to be in the OR since they could not risk my implant getting exposed and infection setting in.  That would add insult to injury.  I am grateful to report that my biopsy is benign and the skin sample is normal.  Dodged a bullet on this one!   

  

The new reconstruction options are very limited.  Everyone will have an opinion but there really is no great option for me. Either way, I am having surgery on November 27.   Instead of starting my bike race training for the 2013 season, I will be getting my ass kicked by another major surgery.  

I will share more about the type of surgery in another post.  It is just too exhausting to explain right now.  It has been consuming my mind and my extra time doing research.  

It can always be worse but for me, this is a big setback that I had not planned on.  It is not cancer this time (Thank GOD) but it is because of the cancer treatments that I have to go through this again.  

The good news is we were spared during the most recent storms that tore through the north east coast.  It is really bad for a lot of people and my heart hurts to see all the devastation.    

I was still able to get up to Maine for my nephews 2^nd birthday and it was a nice distraction from ALL the craziness around us and within my head. 

Happy Birthday J!  

Waiting for his birthday dinner!  

The cake- A handmade log truck.  So fitting for Maine and he is obsessed with trucks!  

Hope all my east coast blogger friends are safe and warm. 

S.M.