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. 

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!  

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. 

Third time will hopefully be the charm.

I had my physical therapy evaluation yesterday and it went in a much different direction than I thought it would.  

If you recall, I have been in and out of physical therapy twice since my first surgery back in May 2010.  I had a lot of tightness in my skin around the mastectomy areas and I had been treated for Auxiliary Web Syndrome – more commonly known as cording.   Cording is thought to be hardening of the lymphatic fluid.  Mostly likely, in my case, it is from the trauma during my auxiliary lymph node dissection back when I had my mastectomy and the 33 radiation treatments I had.  The best way to imagine/picture this is an extremely tight rope that starts under my arm and goes down to my wrist.  My cording is pretty deep, but other people who suffer from this may have more visible signs since they are closer to the surface.  They also call it webbing because in some people it can look like a spider web from these “ropes”.  It usually limits ones range of motion and can cause massive pain. 

In my opinion, the cording really never went away.   I figured that if two rounds of P/T would not break this cord up than I will just have to deal with it.   I have been able to manage it with pretty well by stretching- that was up until recently.  The ‘scar tissue’ that I have been referring to lately is under my arm at the scar line where they took out a pocket of 18 lymph nodes.  The scar tissue has spread south down over my ribs and hardened.  That was the area of concern this past week.   I have been having sharp pains that start under my arm; go through my ribs and across my breast.  I also have shooting pains that go down to my elbow and continues down to my wrist.  Of course my surgeons all say that I do not have cording since I have such good range of motion.  The only reason I have any range of motion at all is from the constant stretching that I do on my own and with my Pilates instructor.   I always ask-  If I do not have cording, what the heck is it?  No one can answer me.

  

I met with the new therapist and during my physical evaluation she asked me a lot of questions about my medical history, treatments, my activity and what I like to do with my time.  She really checked in on my lifestyle which I appreciated.   As I explained where the pain was, she stretched my arm out and pushed on the scar area.  This is when I about jumped off the table!  Sorry about that.  You have a big cord- did you know that?  My reply: No kidding?!  I knew it!  I instantly felt a sense of validation.  As she moved further down my arm continuing to press and follow this cord she said: You have it all the way to your wrist.  There are 3 of them actually but one really big one that starts under your arm. 

So, there you have it.  The good news is she actually believes she can help me with this and for the first time, I feel hopeful about this problem.

 

We discussed this mass of scaring on my rib cage area near my breast-her prognosis was that she will try to work it out as long as I can stand it. She seems to think that the scar tissue has hardened and attached itself to my ribs.  It may have to be released surgically- I am not into that for a couple of reasons.  It is more surgery that increases my risk of lymphedema.  It may be too difficult to manual release that area but she did feel that we can release the arm pit scar and cording so it may help take some of the pain away.    

As part of my evaluation, she measured both arms to check for any sign of lymphedema swelling- all looks normal.  Of course my right arm is a bit larger than my left  but that is my dominant arm and I favor it for obvious reasons.  She did notice a bit of swelling in my rib cage area but she did not seem too concerned about it. 

This ‘new’ diagnosis of cording has landed me 2 hours of p/t a week for the next two weeks.  I was a bit surprised that she was going to work on me for 1 hour at a time but maybe that is what needs to happen to loosen up my arm.  I do not want to give up these extra hours in my week for more appointments but I will make room and remain hopeful that the pain will lessen.  And with any luck, it will go away. 

The weather forecast looks like it will be in the 60’s for the next ten days so I plan on starting off my weekend with some good long rides.  Of course I will follow it up with some stretching. 

Have a great weekend!

S.M. 

Bring 'em on!

I am so excited to report that I have had an awesome week of riding!  The weather has been cooperating nicely so the trails have been perfect!  I have been feeling stronger, faster and more confident every day.  This is all great news BUT as you know, I am having my exchange surgery tomorrow and have no idea how long it will take me to get back to this point again.  I do know that if I can get it back once - I can do it again.  It doesn’t make it any less frustrating.

 

Today was my third solo ride in a row.  As far as I could tell, I was the only person at Graham Hills this morning.  I pulled into the parking lot and it was empty. No bikers, no hikers, no dog walkers.  It was just me and the woods.  As usual I saw a few dozen chipmunks and squirrels that tried to play chicken with my front wheel and I startled a couple deer coming through the meadow.  I was in my groove and feeling actual speed in my legs for the first time in a while.  Just when I started to feel a sense of panic about my surgery taking that away, there it was.  The eagle (or hawk, not sure) swooped down over the trail in front of me and perched on a tree and watched me as I pedaled by.  This is the same bird that I have seen in Graham on other solo occasions.  It is always in the morning and once I even saw it swoop down and grab a huge squirrel off the trail in front of me and fly away with it!  Every time I see this bird, it is at a moment when I could use the reminder to reconnect with my spirituality.  When I need to be enjoying the moment and not worrying about what is ahead.  I have always viewed the woods as my grounding place and like the other mornings, this brought me the peace I needed today. 

Bring on my new boobs!!! 

S.M. 

Preparation.

I have been very anxious about my upcoming surgery.  I have been mostly nervous worrying about all the things that could go wrong:  I have to stop doing that to myself-it can’t be good for my health.
 

 I met with my plastic surgeon last week and I am really glad I did.  I needed to hear from her again what was going to take place during the surgery and what to expect after.  I needed to hear the confidence in her voice when she told me she has all the reasons to believe that my surgery will go well and that I will be more than happy with the results.  Knowing she cannot really ‘guarantee’ this outcome, I still left her office with a huge sense of relief.  And dare I say excitement. 

  

With roughly a week until my surgery and my anxiety sort of under control, I have been getting into preparation mode.  While my recovery is expected to be easier than the first surgery, I am still going to be down for a period of time.  It really hit me that I will have at least two weeks of doing a whole lot of nothing.  I can hopefully get back to work by the following Monday but I am also on full restriction- No exercise and no lifting of anything weighing more than a gallon of milk.  I remember back to my first surgery and how some of the daily activities were so difficult or just were impossible after surgery.  Cooking, laundry, picking up around the house- all of this will become a challenge again or just not get done. Obviously, there will be no biking of any kind for at least a month.  I will just have to find something else to do with my time…..

Besides a few pre- surgical doctor appointments, I have been going about my business- it has been a pretty regular routine for me.  I have been working a ton and trying to get in as much riding as possible.  It has been so incredibly rainy this season,  so getting out in the woods has been spotty at best.   I cannot remember a time when the woods were so saturated.  I have managed though and even have hit the road a bit which can be a great time with the right people. 

Taking a break after a brutal climb.

What was to be a mellow 30-40 mile ride turned into a near 60 miles with many hills and each hill seemed to be harder than the next. 

While the weather looks near perfect for the week ahead, fall has arrived.  I decided this was the right time to swap out my summer wardrobe.  As I pulled out the first bin under the bed, I opened it up and there it was- my bra collection!  It might as well have jumped out and grabbed me like the boogie man.  Why have I put all my bras away?  Simply, they do not fit over my tissue expanders and frankly they are uncomfortable and unnecessary.  These rocks do not move, even when I mountain bike!  The not so simple explanation is I got sick of opening my top draw and seeing them.  It was a memory that I was not ready to look at yet.  Some things still sting.  So while I may be getting my new ‘boobs’ in a week, they are not my old ones.  Those were pretty fabulous if I can say so myself. 

 

Bras will return in my future but chances are I will be shopping for some new ones.

S.M.