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. 

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. 

With time...

Today, I was given my final Herceptin infusion.  With time, I am hoping this image will be a very distant memory. 

Race report and Timelines.

G and I woke up last Saturday morning and headed out for our morning pedal.  Nothing too intense- just a short spin up the OCA to get our legs to open up a bit and make sure the bikes were race ready.  I was careful to not overdo it the week prior.  I just do not have the same recovery time as I used to and have not even figured out what is really too much.  

Old Croton Aqueduct -OCA

True to form, my Herceptin treatment made my knees and ankles achy and I just felt sluggish.  I am sort of getting used to it but it doesn’t make it any easier.  I cannot wait until my last one on the 18^th!  In the meantime, I just hoped that the next morning, I would feel better.  

Taking a rest at the framers market on our way home.

Some of our yummy treats for the house.

Apricots were off the hook!

Racing not only involves a lot of physical preparation but it takes a lot of time and energy to make sure all the bikes, gear and nutrition are all in order.  This has to be done the day/night prior since we would be up at 5:30 Sunday morning.  I usually like to also plan my dinner well so I eat the right things and early enough.  I don't want to eat too late or I feel too full the next morning to eat my breakfast.  

The alarm went off Sunday morning and G and I both stood around the coffee machine.  “I don’t miss this part of racing” he says.  I grumbled in agreement as I patiently waited for my morning brew and assessed how I was feeling.    In the past years, on race day mornings, I would wake up all excited and do a little chant/clapping thing saying “It’s race day, race day, race day”!   Well, that did not happen this Sunday morning.  In fact, I really was wondering if I was going to make it to the start line let alone the finish line. 

Gear and bikes were loaded in the car and we were ready to head north.  We made great time, rolled into the lot and I realized at that moment-it’s on.  It is officially race day.   As always, it is great to see the familiar faces.  The Dark Horse promoters always put on a top notch event and draw a packed house.  It helped to feed my energy and get my butt in gear.  We signed in, kitted up and decided to warm up a bit.  The sun was already blazing.  It was going to be a hot one!  

The race started off with a 3 mile fire road to break up the field a bit.  They started the women single speeders with the men single speeders but I quickly fell to the back of the pack.  I settled into my spin and just tried to get my body into a groove.  My knees hurt and legs were a bit heavy but overall I felt decent going into the first single track.  It wasn’t until the second half of the first lap that I started to really question my choice of racing my single speed for 40 miles.  It was at mile 14-17 where most of the punchy climbs were and my legs were just not opening up.  I got to the feed zone after the first lap and took a few minutes to regroup.  I did not stop at any of the other water stations so felt I needed to take an extra minute.  I almost stopped too long because my mind started questioning my body and I was pretty close to calling it.  I scanned the sidelines and there were racers that had already given up and they were not going back out.   I started to get myself set to go and I heard a voice yell out “Get going Reba”. It was my friend Jocelyn.  She was not able to race this day due to her own medical issues.  I owed it to both of us to get back out there so off I went.   

That second half was a huge struggle for me.  I did seem to find a lot of strength in the fact that last year, I was on the couch sick as a dog from my chemo treatment and I could not even make it up there as a spectator.  I started to really feel the heat and my left arm started hurting something awful.  By mile 30, my right foot started up with the neuropathy side effects and my hands went numb.  It was a real push to get myself to that finish line but I did it.  It was no record time for me but it was not my worst performance either!

I am grateful that I was able to race and I always have a great time with the whole scene.  But, I think I will be taking the rest of the season off of racing and will just try and enjoy riding my bike...maybe I'll do one more.   

Monday afternoon was my endometrial biopsy.  I was still exhausted from the race and my body was hurting all over.  I was ill prepared for this procedure.  I was told it may be uncomfortable and pinch a bit.  Really? Okay, I can handle that.  Well, let me tell you.  It was outright painful and caught me way off guard.  Once the doctor was finished, I had some cramping and bleeding for a few hours but nothing too crazy. It was just that 10 minutes of hell that I will remember for a long time so I hope I never have to do that again.  Results may be a week or two but I am really not worrying about it.    

So, this has been a long week but the good news is, G and I are heading up to Maine for the weekend.  Cooler temperatures, casual bike rides and good eats!  Last time we went up there, I couldn’t do as much because I was still recovering from my surgery.  I have to look back at these timelines so that I can remember how far I have really come. 

Have a great weekend!

S.M.

Trying to find balance: is it ever really possible?

Out of my handful of doctors, I have/had a Dr. A., Dr. B and a doctor D.  I have been joking all along that all I was missing is a Dr. C. 

Well, not any more- Meet Dr. C. my new GYN that has taken over as one of my many watchful eyes.  I had a follow up appointment with him last week to go over my most recent ultra sound results from the end of last month.  I had no reason to be overly concerned, as I had received a copy of the report from my oncologist when I went in for my Herceptin treatment.  She didn’t seem too worried.  Her response was matter of factly-“they are going to continue to torture you with these follow up tests.”   She then wrote out a script for yet another ultra sound follow up. 

She was right about the constant torture of being poked and probed, because Dr. C. is a bit concerned with the most recent findings.  Among many potential side effects that Tamoxifen can cause, the thickening of the endometrial lining is one of them.  In a rare case this can lead to endometrial or uterine cancer.  This is one of the things they are monitoring when I get these ultra sounds.   The new findings show mine has almost doubled in size in 3 months.   This could be my body just trying to adjust to the Tamoxifen or it could mean that my body is up to no good.  

I am scheduled for an endometrial biopsy in two weeks.  I really wish I did not have to take this drug.  I would be lying if I told you that this biopsy did not scare me.  Frankly, it is causing me a bit of anxiety to have to go in for this biopsy- The last biopsy I had on April 13^th of 2010 set off a whole chain of events, so I am still a bit gun shy if you know what I mean.   

  

I really should not complain because none of this is really hindering me physically, so I am able to work full time again and ride my bike as much as time permits.   G and I have been enjoying the summer and have had some awesome rides trying to get ourselves ready for the next big race.  The Dark Horse 40 is less than two weeks away and I have officially switched my entry so that I will be racing my single speed.   

G took this photo during a great day in the woods.  You should be able to view larger if you click on it. 

My sister has been down from Maine since the end of June and will continue to be here until the first week of August working her summer job.   It has been so awesome getting to spend time with her and my nephew Jesse.  I feel so lucky to get this extra time with them both.   Last year was so different for us since she was pregnant and I was sick or recovering the whole time.  

Me and Jesse -4th of July

 

Despite these new findings and feeling like I am still stuck in the ‘cancer vortex’, I have found comfort in the fact that those days are becoming fewer and farther apart.  I am not immersed in it all every moment of everyday.   Still trying to find that balance.   

Taking in the sunset together on the Hudson River.  

The “Wait and See” approach.

I had my follow up appointment with my OBGYN regarding my suspect radiology report.  It was pretty non-eventful as all we did was go over the report together.  This was helpful because I really did not know what it all meant and using ‘Dr Google’ is not always the best way to find your answers.    Bottom line is I have a fibroid or two : one is pretty large.  I also have a couple ovarian cysts.  This is all very common and usually benign findings for women in their 30’s.   But of course- with my history I will be carefully watched and monitored.  After discussing it all, we collectively decided to push back the follow up ultrasound three months and take the “wait and see” approach.  I am not off the hook but nothing appears to be life threatening or even close to it.  Now I just have to not think about it. 

 

The three weeks were up already between my Herceptin treatments.   The side effects were a bit different this time.  I felt much more tired and achy for a couple days.  Friday morning my knees and ankles were really sore when I woke up.  Was it the Herceptin or is it the Tamoxifen?  The runny nose and headaches usually follow two weeks post treatment.  It is worse at the 10 day mark but it all seems pretty manageable in the grand scheme of things.  I am now only seeing my oncologist every other treatment so I did not see her this time.  To be honest, I was relieved.  As much as I like knowing I am being looked after, it adds more time and anxiety to my day.  

Despite my complaints of aches and pains, I am overall feeling really strong.    I have been focusing on my bike training and nutrition and it seems to be paying off.  

   

After the really bad week I shared about in my last post, I was starting to lose faith in the fact that I could do this huge race on June 5th.  If you don’t remember, I am registered for the Bearscat50 - a 50 mile mountain bike race.  It will not be an easy 50 miles either.  The Monday following that bad week, I walked into the Pilates studio feeling tired, weak and discouraged.  My instructor is really amazing.  She has understood my focus from the beginning and she knew something was up with me that day in the studio.  She asked how my training was over the weekend and my reply was basically – minimal at best.  We talked about what was not feeling right while she quickly got me started on one of the machines to stretch out my legs. It took about 15 minutes into the workout but I was already starting to feel better.  She pushed me hard that day and moved me quicker than usual.  Her goal was to energize me with a fast paced core workout to make me feel strong.  She purposely didn’t work my legs hard so I could go out and ride my bike that evening.   Her plan worked and that night I hit the road for an awesome 34 mile solo road ride and felt stronger than I had in a long time.  I owe a lot to this Pilates instructor and for believing in me and giving me her time and guidance.  My recovery would not be the same and I believe it has made a huge difference.  I am so grateful for the opportunity. 

This jump start to the week really helped get me back in the training groove.   I have had a few weeks of great riding and workouts.  

A couple weekends ago, there was a race at Wawayanda in Hewitt, NJ.  It was the first race of the H2H mountain bike series but G and I both decided not to race in it.  I probably could have raced, but I was not ready to put the pressure on just yet.  I felt I needed the training block so instead we decided to head out to the course on Saturday to ride a few loops.  This is the same venue where the Bearscat50 will be so even though the course will be different, it really gave me a reminder of the lay of the land.  While it is not the hardest mountain biking I have ever done, it is certainly one of the more challenging and rocky areas to ride around here.  A mile into the race loop, I felt great.  I had that extra light feeling on the pedals and was coasting through the first set of rock gardens without a hitch.  This course was no joke and there was one technical section after another.  It really made me have to stay focused and be present.     Lap two, maybe I was a little too arrogant from lap one but I was reminded how quickly it can happen.  I hit a rock the wrong way and slid off my bike only to find my right arm ripped up from the rocks.  It was bleeding quite a bit, but surprisingly it did not hurt as bad as it could have.  It stung as I rode on and I was just angry that I fell on something so silly.  I am still frustrated at times with my new body and my new physical restrictions, this put me in a bit of a tizzy for the remainder of the 2^nd lap.  I could tell G was just trying to keep his distance the rest of the lap.  He knows that I usually work this sort of thing out for myself.  Sure enough, I did and lap three was another experience.  While I was a bit more timid on the really gnarly stuff, I still rode well and we ended up with a good 25 miles of technical riding in our legs.  It was a great training day for both of us.  On the way home, G and I actually talked about how I felt after the crash.  The frustration, the anger is all understood and merited at times but crashing on my mountain bike…that is just mountain biking! 

G was riding like a champ that day! 

A new section of trail.

 

I thought I would be too spent on Sunday to ride the dirt so we decided to go for a road ride instead.   Road riding is not easy but it sure has a different effect on the body.  My legs felt tired in the morning but not as bad as I thought they would.  I still had quite a bit of life left in them.  My lungs felt clear despite the horrible pollen in the air and my heart rate felt right on target. We had a great 45 mile road ride on a beautiful sunny day! 

This past weekend we headed down to Pennsylvania for a family visit and of course we brought the bikes.  We are down to the wire here for training and can’t lose a day let alone a weekend.  We had planned to go Friday night.  The overall week and my treatment took more out of me then I anticipated so we decided to get a good night’s rest and head out first thing in the morning.  We drove right to the trail head at Blue Marsh Lake.  This was by no means a technical place to ride but it had plenty of mileage, awesome singletrack and more climbing than we anticipated.  We had such a great time riding there that we decided to head back the following afternoon before driving back to NY.   This was a great plan as we were able to get another solid day of riding in with over 4000 feet of climbing over two days. 

Stopping for a break in this beautiful field. 

Bikes eye view.

So does this all mean I will be ready to race June 5?  I guess we will have to “wait and see”…

Thank you for reading. 

S.M.

Steady miles and spreading the love.

Despite the predicted snow this past weekend, G and I manged to get 5 1/2 hours of road riding in.  Saturday was a chilly start and we even saw some snow flurries!  Once we got moving, we warmed up and were able to get in just over 33 steady miles.  

On Sunday, I was invited to join some fellow mountain bike racers for a group road ride.  It was so awesome to have the invite and it made me feel really great to have this particular group even think of including me.  I had to graciously decline as I am not feeling quite ready for a ride at a group pace.  I'll get there, but it is so important for me to take it slow right now.  I still got out there on Sunday and finished another 37 miles with my guy.  He is so encouraging and helps me in more ways then he even knows.  I could not ask for a better training partner.   

I felt really great both days.  I was a little more comfortable and steadier on the Sunday ride.  My legs felt strong.  My heart rate was steady and my lungs felt clear.  This is all very promising that I will be back up to speed in no time.  As much as I miss riding my bike in the woods,  being out there on the open road made my head clearer than it has been in weeks. 

My arm felt alright....Not great,  but not horrible.  I need to build my strength up in my arms again so I can lean over on the handle bars for long distances. I am still in physical therapy and it seems to be helping my arm cording a lot.  I wear a compression sleeve while I'm riding.  According to my therapist, I show no signs of lymphedema but she suggests that I wear the sleeve during strenuous exercise or heavy lifting. I am not sure I completely believe that it will prevent me from getting lymphedema but as long as it's not hurting me, why not?! 

I have a busy week ahead.  It seems like my cancer treatment/follow up care is still a full time job.  I already had P/T today and will have my second session on Thursday.  Tomorrow morning I have to head back to the dentist to have my second filling replaced since I ended treatment.  I have read of some patients having horrible teeth problems post treatment.  I just didn't expect it so soon!  Actually my teeth and gum's looks great so it could just be a coincidence that two fillings broke within two weeks....I go straight from the dentist to my  6 week follow up with my radiation oncologist.  Hard to believe I have been finished radiation for 6 weeks already!  My skin looks good and I feel good so I don't anticipate this being a long appointment. 

For the most part, life is coming back to a sense of normalcy for me.  I still have moments of What the hell happened to me?!  but  I am sure I always will.  It will hopefully fade away with time.

It is Valentines Day and at the risk of sounding totally corny- I am so grateful for all the love in my life.  Family, friends and of course my guy.  I could never have done this without all of you.  I am a lucky woman.


Happy Valentines Day to all of you! 

♥

If you must know.

I took my first Tamoxifen pill last night....So far so good. I'm exhausted today,  but I don't think one has anything to do with the other.  After my last post, I had received some gentle nudges from some family ( AuntK) and other loved ones ( G).  I also had a good friend suggest to me to just think of it as another daily vitamin.  So, let the 5 year count down begin.  Only 1,824 pills to go!

It is Friday and they say we have more snow on the way for tomorrow.  Good grief.  I wonder when winter will end and the idea of riding my bike in the woods will stop being just a dream?  I have started back up on my indoor trainer- which is so boring,  But I have to get the pedaling in some how.   G and I had planned to try and get some road miles in on Sunday.  The weather looks like it might clear up and be close to 40 degrees, BUT my poor guy has sprained his knee.  I just hope he feels better soon.  We have some serious training to do!

Have a great weekend!  

Rebecca

I just can't get myself to do it.

Every three weeks I have to go for a  follow up with my oncologist and get my Herceptin treatment.   This will continue on until I am finished with Herceptin in September of this year.  During my last visit with DrW, we discussed a few important things.  Among those topics was Tamoxifen - the hormonal treatment that I have to take everyday for the next 5 years.  Since a strong percentage of my cancer fed on estrogen ( ER + ) this is a continuation of my treatments to help keep this cancer away for good.  You would think I would want to take this pill and yesterday!  Needless to say, I am not overly anxious to start a new drug.  Especially since I finally feel like my body has almost detoxed from all the chemo.  I have been really nervous to start.  Like all pharmaceutical drugs, there is always the potential for side effects.  Some worse than others and it has me very anxious.  While the topic of whether or not to take the pill was not  up for discussion, ( DrW said "you HAVE to take it") when I start taking it was.  "I don't care which day, you pick but when I see you next, I want you to have started." So, it's been two weeks and everyday I take my regular vitamins and I stare at this bottle of pills.  I pick them up, I think about when my next appointment is and I ponder, Is today the day I should take this pill?.....With a week to go until I see DrW, I better take it soon.  I am not happy about it but I'm not really happy about any of the treatments I have had to take.  It just better work!