Looking forward.

This week marks 3 years from my cancer diagnosis.  This anniversary did not come with the anticipated anxiety that the previous years have.   It is not that the fear of recurrence has completely escaped my mind but I am trying to look forward.  The side effects from my treatments continue to be painful reminders of what I have been through but I refuse to let them stop me in my tracks.   I am just learning to accept them even if they slow me down.  

Moving forward, I am hoping to keep my focus on my career change as a full time Pilates instructor and working with the non-for-profit helping other cancer patients.   It has really been my silver lining that has come out of the ‘cancer vortex’.  I am following my heart on this one and have faith that it will lead to all good things.  Besides, it makes me feel good about myself. 

Racing season is here.  I have been struggling with renewing my USA Cycling license.   If I renew my license the way I left it in 2010, I will be racing as Cat 1.  I really have no interest in downgrading my license and going backwards to Cat 2 but I also fear the pressure this may put on me to get back into the shorter cross country race scene.  I have been racing more endurance races and ones that do not require a USA Cycling license so until now, it has not been an issue.  I had intended to get back into the local cross country scene this year so I need to make a decision and quickly.  The first race is this Sunday and of course it is on my home turf... The Chainstretcher at Blue Mountain Reservation. 

We were lucky enough to get out to Sedona last week for a mini-vacation.  It was sort of a last minute decision to head out there for G's sisters engagement party.  I am so glad we went for many reasons but we were also able to squeak in a couple really amazing days of mountain biking.  That place would be how I imagine heaven!  

The most important thing that I can write about today is -  I am cancer free and I feel pretty damn good about that! 

To those that have been following along over the past 3 years, thank you. 

Knowing you are all out there cheering me on, really helps to get through those hard days. 

Happy Spring! 

G and I in Sedona last week ♥

S.M. 

Courage Angel.

At some point during my cancer treatments, my cousin and his wife sent me this thoughtful Willow Tree Courage angel.  I put it right next to my bedside and it has remained there ever since.  

The other night, as I was getting ready for bed, the angel caught my eye in a different light.  

For the first time, I took notice that she has no boobs!  Her arms are up over her head and her chest is sticking out but there are no breasts.  She is still radiating confidence and courage.  I saw myself in this angel that evening.  It made me feel proud, strong and empowered.

While I do not feel that way about myself every moment of every day, that angel will be a reminder to me to hold my head up high and stick my ‘chest” out even when I feel scared or I am being kicked down. 

I have been very over extended the past month or so.  Like many of us, I feel like there is never enough time in a day.   I have gotten myself involved with so many different projects and organizations this year that I am having difficulty keeping up on my writing.  The times that I would normally find to write have been taken up by other necessary tasks or just pure exhaustion from the day.  

The exhaustion could be from me trying to fit too much in a day; difficulty sleeping ; more exercise or it could all be from the new drug that the doctors have put me on.   

I am still on Tamoxifen but now they have put me on a monthly injection of Lupron.  This will go on for the next 6 months and it is an attempt to shrink the fibroids that have grown out of control.  Our wait and see approach is no longer going to work.  While not an emergency, it was time to take action as these benign tumors are causing abdominal pain and discomfort.   If this treatment is successful, it will give me less invasive surgical options.  Once again, none of these options are “good” ones, just options.  Ironically, this rapid growth is caused by the Tamoxifen but no one is going to endorse me going off that medicine.  Frankly, I am not sure I can stop taking a drug that is prolonging my state of remission.  It is just another pain in the ass side effect of my treatments for breast cancer.    

I have taken a break from physical therapy for my lymphedema.  While I still have some swelling under and around my elbow, it seems to be under control and I have been given new techniques to manage it. Based on the last measurements of my arm, the swelling has come down enough for me to self treat.

   

None of this has stopped me from training on my bike or in the Pilates studio.  I have not been in the studio as much as I would like but I did attend another workshop last Sunday and those always help to boost my motivation to pick back up on my teaching hours and personal hours. I have been back on the bike feeling stronger every day.  I am trying to get some longer rides in but that has been so hard with the nasty weather and lack of time.  I have faith that it will all come together.  Either way, it will be what it will be.  

Spring is just around the corner and ready or not, my first bike race is next month!   I will keep moving forward no matter what falls in my path.  

When I am feeling beat up, I can just remind myself that Courage Angel is in all of us, somewhere.  

S.M. 

An exceptionally beautiful day last weekend. 

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. 

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. 

Daring to be great- Hampshire 100 Recap

G and I had driven up the day prior to the big race and spent the night in the cute little town of Peterborough, NH.  It was only minutes from the Hampshire 100 start/finish and we had a bed to sleep in instead of camping.   It did not seem to matter much since I did not get a good night sleep anyway.  I was probably overly anxious about the long day ahead and the fact that my alarm was going to go off at 5 am.  I do not wake up that early on purpose- ever! 

I had no idea what to expect that morning.

It was less than 50 degrees at the start and the sun was shining.  It was an amazingly beautiful morning for a bike ride and was a huge relief from the insanely hot and humid weather we have had this summer on New York.   

6:45 am came quickly and we were off!  There were 400+ racers in total but not everyone was racing the 100 mile option.  The past 5 years of this event has “only” been a 100 K and this was the first year they were added to the NUE race series with the extra mileage option.  Of course I signed up for the 100 mile category. 

The race started off pretty quickly and I tried to just settle into my own race.  It was hard to do. I look back now and I am sure that the ‘bike buzz’ got the best of me for the first 20 or so miles.   I started out with a couple other women.  One of them was a single speeder- Hannah. And the other was a woman that I knew from New York, Chrissy.  It was nice to have a familiar face to start off with and she has done a 100 miler before.  I figured if I just stick with her for a bit, I could maybe find a good steady pace.  It was working for a while.  

G had decided to wait for me at the first aide station and we quickly headed off together. 

We pedaled with our friend Shoogs for a while.  We pedaled the course with no idea what was ahead of us.   I had read the course description but when you are out there in the mix, nothing really is what you thought it would be. 

We had a pretty good pace and my spirits were high. The course started to pick up some steam.  Railroad tie bridges; ‘the beach’; jeep trails with techy descents and loose steep climbs; the power line climb- which apparently had a great view if you turned around.   I didn’t look behind me all day.  Freshly cut single track that sapped my legs on ever pedal.  Mud, roots, rocks.  It was never ending.  

Rolling up on a man playing the fiddle in a field was probably one the highlights for me.  We were having a great time but suffering all the same. 

We pedaled through people’s back yards as we looped through 7 different towns.  They cheered us on and waived from their porches.  We waived back and thanked them as we heading into the woods.  The smell of pine trees kept me sane.  I said out loud to G, “2 years ago, almost to the date- our lives were so different” I was feeling so lucky to be out there suffering on my own terms and soaking in the day. 

At "the beach"

Somewhere around mile 40-45, my stomach started to bubble up.  The pressure started to build and the cramping got worse.  I kept pedaling and hoping it would just subside a bit.  I had a Dixie cup of coke at one of the aide stations hoping it would settle my stomach.  I had stopped eating.  I was heading for trouble.

 

I was still with G and he was calling out to me to make sure I ate something.  I just couldn’t do it.  I felt too sick.  It was either the Heed or the Perpetuem chews.  I have used both before without any problems but I could not figure out what else it could be.

 

We pressed on.  More mud, more climbs and a water bog that was thigh high deep.  There was no way through it without lifting your bike and slogging your way through hoping not to twist you ankle on the invisible rocks below.  Needless to say, this was not a highlight of the race for me. Although my bike is light, my ability to lift anything over my shoulders since my mastectomy and reconstruction surgeries has been a challenge.  The cold water felt nice on my legs except it really triggered my neuropathy in my right foot. It was already bother me the same as usual but it was now hurting badly, especially when I would have to walk a section.    

Me- Attempting to get back on the bike.  G had his GoPro on photo instead of video. 

I tried to remember some of the many suggestions this awesome lady gave me.    “No matter how good or bad you feel it will not last, just keep moving forward no matter what the pace”.   It did get a bit better but at that point, my nutrition was malfunctioning and my pace dropped off so much that I was not even sure we would make the 4:00 pm cut off to head out for the second part of the course.  For the safety of all racers, they had time cut offs that would make sure you were off the course by 7:30 PM- for obvious reasons. 

The modified second lap for the 100 milers began at the start/finish.  This is brutal on the psyche.  I should also mention we only rolled in with 3 minutes under the cut off time and it looked like a fun party happening on the start/finish site with all those that had already finished the 100 K and a few top racers that had finished the 100 miles.  We decided to head back out on the course, but this was not an easy decision. 

I started to do the math as I looked at the cut off times that I had taped to my handle bars.  Could I keep up over a 10 mile an hour pace for the next 35 miles?  I was not keeping that pace as it was, so it was not likely I could then.  A couple miles into that second lap, G and I agreed that we were done.

 

I will not lie, I shed a few tears as we pedaled back to the score tent to let them know that we were quitting.  My disappointment ran high.  In all reality, we would never have made the cut off time at the next feed station and I would rather pedal myself back than have to take the support car back to camp.

 

Had I signed up for the 100 K, I would have had a finish.  But as G said to me as we headed back to the start/finish area to tell the officials we were out-  “You have to dare to be great.  We will come back another day and finish our 100 mile race”.

 

We ended up with 70 miles, over 7000 feet of climbing and over 9.5 hours of riding.  Not bad for a day on the bike and I am proud of that.  Had I not had a GI issue, my race could have been much different.  My arm cording  never hurt and my hand did not swell in my glove. Probably because I did not use a camel back and the humidity was low.  Amazing my back never hurt either.  I was even climbing well.  I had a fun day and I learned a lot about endurance racing.  I need more practice and need to dial in my nutrition better.  At the very least, find something to eat that does not make my stomach sick while riding.  I also think I will try a different 100 miler next year.  The New Hampshire 100 was supposedly one of the hardest in all of the NUE series- and it just so happens to be the one I chose for my first attempt. 

This quote has always been a favorite of my guys and his “dare to be great” comment is inspired by this quote:

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again; because there is not effort without error and shortcomings; but who does actually strive to do the deed; who knows the great enthusiasm, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least he fails while daring greatly. So that his place shall never be with those cold and timid souls who know neither victory nor defeat.”  Theodore Roosevelt

Many others did not finish the 100 mile race on that Sunday, but we were all out there- Daring to be great!  

Spring Forward.

It is now officially spring on the calendar but it feels like it has been here for a while now. With all the warmer than usual temperatures in New York, it seems as though we skipped over winter this year! My daffodils are in full bloom and I caught a strong smell of lilacs on my road ride the other evening.

Shorts and short sleeves on the first day of spring. 

Notice all the hair sticking out of the helmet!  

The arrival of spring also means that the start of mountain bike race season is only weeks away for me. I am not sure I am actually ready for it-physically or mentally. I won’t really know until I race my first race. I do feel a lot stronger than I did last year at this time but that does not give me much to go on since this time last year I was only 6 months out of chemo, 2 months out of radiation treatments, just starting my 5 year sentence of Tamoxifen and getting Herceptin infusions every 3 weeks. Compared to all that, I am doing great!

Solo ride on the single speed. 

Actually, I am doing well according to my new primary doctor. I had a regular physical last week. This was the first overall physical I have had in years. It seems surprising since I have seen so many doctors but they are all specialists with their own focus- cancer and new boobs.  This was a new doctor for me but I really liked him.  He ordered a full blood panel to see how I was doing. I have gotten my share of blood drawn over the past two years but my oncologist was never looking at things like cholesterol or my thyroid. She is usually more interested in things like my tumor markers, liver panel and blood counts. According to this recent blood work, I am very healthy. Vitamin D is up quite a bit, cholesterol is “perfect” and my thyroid is normal…phew! The cancer treatments have been known to do wonders on the thyroid. I will have blood work done again next month but this will be at my 4 month oncology follow up. Unless there is something really wacky with my tumor markers, I have no reason to believe I won’t get the A-okay from my oncologist as well.

I have had 4 physical therapy appointments thus far and my new physical therapist J, is not messing around with these cords in my arm. She has actually found another one that is deep in my bicep and a few small ones that are splitting off at my elbow.

 “No wonder your wrist hurts” she said to me Monday as she was stretching and massaging the “mother cord”. (That is what she calls the new one she found) I am struggling a bit with how much it hurts during but mostly afterwards. I have to wrap my arm in ice packs when she is done with me.

It does seems to be paying off. At the end of our session yesterday, it actually felt like the tightness had given way in some areas. Not completely but I am still hopeful.

It seems that all the extra efforts - diet, biking and Pilates is starting to amount to some positive changes in my body. It has not been easy getting to this point but I am a true believer in - you have to do the work. The doctors can only help me to a certain level, then it is up to me. My body has done some healing naturally but I have really had to push myself to get back some sense of control again.

As I spring forward, I will try to keep up the work and hopefully stay on track.

Heading home before sunset. 

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. 

Extra Good Vibes.

I have been debating on whether or not I would even share this.  Mostly it is because I do not want to give it any energy.  I recently wrote about how I hoped to be writing about my cycling, training and how great it is going-but that is not the case today.    The cycling is, well…going.  Not great, but I am riding.   I have been struggling more than I have been willing to admit and it started before my most recent cold.  It is not coming together fast enough for me- and I am also facing a scan which potentially could bring some scary news.

I can’t seem to shake this cancer vortex. These days I am only going to the doctor for my regular follow ups.  At the beginning of the month, I had my 4 month post surgery follow up with my plastic surgeon- just the normal routine follow up.  I have been complaining of a painful area on my left side (where my tumor was) under my arm and down my torso.  We had been waiting for the swelling to come down from my surgery - we had been just watching it to see if the swelling was going down.  During my recent appointment we discussed many things.  Some of which were the lack of symmetry of my new breasts; which one I actually like better; nipple tattoos and of course this painful hard mass of scar tissue under my arm.  It is clear that I am no longer swollen from surgery so she suggested a visit to my breast surgeon to have a look at what she believes is just scar tissue and radiation damage.

 

Like a good patient, I met with my breast surgeon 10 days later and she agreed that this mass is most likely scar tissue.  She is suggesting that I start physical therapy again to see if the therapist can work out this mass with some deep massage.  This is not a soothing or relaxing type massage- I am not looking forward to this.  I am just hoping it can release some of the pressure I feel in my side-it is so tight.  I wish the story ended there but it does not.  While she was showing me how to massage the scarred area, she said she wanted me to have an ultra sound of the area.  She truly believes it is scar tissue but there is an area closest to the original tumor site that is much harder than the rest of the ‘scar tissue’ area.   This could just be from the radiation damage but since the cancer I had was so aggressive, she cannot risk ignoring it.  She also wants them to scan closely my right under arm because during my exam, she found a swollen lymph node.  She had me feel it and sure enough it was.  It could be nothing but my body reacting to my most recent cold but it is still there today and my cold is gone.

I really do not want to start this process but it looks like I have no choice.  So, back in the vortex I go.  My ultra sound appointment is March 6.  It is so hard to not think about the ‘what if’ and stay in the moment, but I am trying my best though.

 

So for those of you that think that it is over; it will never be really ‘over’ until they find a cure for cancer.

 

My tests will be benign and it will be nothing but a big fat waste of time.  I cannot think of any other possibility.  

  

Thank you for reading and for sending any extra good vibes. 

S.M.  

Beating the Odds.

Final Ride of 2011

We are already a few weeks into 2012 and tomorrow will be my 38^th birthday!  The time between the holidays and my birthday seemed like a blur.   Actually the time between all of my birthdays can sometimes seem like a blur.  Where does the time go?

I use to worry about getting older, but now I usually just smile when I hear people say “oh my GOD, I am getting so old!”  Getting old is a gift.  Since my cancer diagnosis, age is sort of game of Beat the Odds for me now.  How many birthdays can I get to celebrate from here on out?  I would not mind 40-50 more years please.   Is that too much to wish for?

 

I know it may seem strange to others, but it has not been until recently that I have thought about how not-sick I really was before my diagnosis with cancer.  Cancer is and can remain for a long time, a very silent killer within someone’s body.  I do know that I was not too far away from being in a world of trouble, but I really did not feel sick.  I felt great- probably the best shape of my life.  It was not until they gave me treatments to make me ‘better’ did I truly feel sick. What I am really recovering from is the treatments, not the cancer.   I powered through most of it, rode my bike, worked, and lived the best I could every day. Yet, I still have a hard time comprehending whether or not I was really ‘sick’. 

  

I feel like my riding is coming together and I am starting to feel my strength returning.  This has only really occurred in the past two weeks.  We have been able to get some pretty good miles in since the weather had been so warm.  My endurance is coming back and I am actually feeling pretty good -most days.   I think my body has recovered from most of the treatments, but then I overdo it on rides and working long hours, and then I feel exhausted.  I would like to think that goes the same for most people so I won’t give it too much thought.

   

Winter has finally hit the New York area.  It would not be my birthday without below freezing temperatures or a snow storm.  That is more like it! While I do wish tomorrow was going to be 50 degrees and sunny, I will take the day as is.  

Beautiful day for a hike...20* and sunny!  

  

So, here is to me turning 38 with a strong 40 or 50 birthdays in my future!

Thank you for reading.

S.M.