Wednesday, March 5, 2014

Not-so-quick 5-week post oophorectomy update

The original title of this post was "Quick 5-week post oophorectomy update", but after reading how lengthy it is, I changed it to "Not-so-quick.......".

In my last post I mentioned that my short-term goal was to ride dirt by the first weekend of March.  Well, it seems that my recovery from surgery is right on track.  Warm weather and dry trails tempted me to sneak in some short dirt sessions a week early; just enough to allow me to feel confident that my body was ready for some legitimate mountain biking on our trip to St. George the first weekend of March.
While the rest of the country is experiencing the Polar Vortex, 
it has been a springlike February in Salt Lake City.  
All the snow is gone!

It ended up being a quick weekend getaway to the desert, but it was the perfect test of my progress without over-doing it.  I started off riding a bit conservative. I was afraid to cause pain or damage by over-contracting my core to get up and over obstacles on the trail.  By the end of the weekend, I was confident that I could safely engage my whole body, however it was also clear that some strength had been lost over the past five weeks.   The past three years of my life have been all about building strength and fitness, just to be knocked down by surgery (six in total), chemo (eight months), or radiation (30 treatments).   Phew.  That's a lot of knockdowns!  I also know that with patience, time and a whole lot of hard work my strength and fitness will be back.

Being silly in the desert

Dizzy wasn't sure he wanted to leave the desert

While my active treatment (with the exception of Arimidex) has thankfully come to a close, I will continue being closely monitored indefinitely.  To kick things off, last week I had my first mammogram on my non-mastectomy side.  I got the dreaded call-back (anyone who has had a mammogram knows what I'm talking about), but it wasn't dreadful at all.  Instead of getting bad news, the radiologist just wanted to say hi and see how biking was going.  I loved it!  I truly appreciate when my medical providers identify me as not solely a cancer patient.  While cancer is (unfortunately) a big part of my life, I refuse to let it define me.  I am an athlete, occupational therapist, wife, sister, daughter, friend, animal lover (I could go on and on) who just happens to have (had) cancer......

That said, while I am moving full steam ahead from active treatment, it is always good to stop, breathe, and reflect on where I am in my recovery.  Here are some notes regarding my current state of recovery:

Post-Salpingo Oophorectomy:
-Yoga pants became my best friend.  Blue jeans became my worst enemy.  Since I am a blue jean girl, I compromised and ended up investing in a pair of jeggings that are much more comfortable on the incision line than my other jeans.  They're pretty cute too:)  Of note: Cycling bibs are pretty comfy too!
-After a Salpingo Oophorectomy there is a lot more pain on the right side of the abdomen than left.    This is normal, but weird.  I think it has to do with everything getting pulled out of the right incision.....
-Three weeks post-op I had some interesting tingling/sensation/itching in my abdominal/pubic bone area.  I think it was my skin waking up and regaining sensation.  The appropriate pants were key to comfort.  I still have some numbness.
-Four weeks post-op I was finally able to push hard on the bike.  Helllo intervals!  Did my first set of threshold intervals since May 2013.  Felt sooooo good!

Post radiation:
-Stretching of the shoulder, neck, and pecs EVERY SINGLE DAY is mandatory!  My pectorals muscle(s) seems to get especially tight, which makes sense as they were hit hard with radiation.  Without stretching, range of motion is impacted, and I can see how frozen shoulder can easily develop.  I was told that radiation continues to have an affect on tissue for up to a year after treatment concludes.
-Moisturize, moisturize, moisturize.  My favorite moisturizers on my radiated skin include calendula oil and beeswax lotion.  I also massage the radiated breast daily in hopes of limiting capsular contraction.

Post chemo:
- Like I was warned, two rounds of chemo have hit my bone marrow hard.  My white blood cell counts remain slightly depressed, therefore I seem to be wandering around in a state of mild immunosuppression.  Despite this, I have not had a single cold/illness since, well, long before I started treatment in July.  I attribute my good health to quality nutrition and exercise balanced with ample recovery.   Balancing hard workouts with quality recovery isn't a something I "should" do, it is something I "must" do and my training program and current lifestyle reflects this.  Instead of following the typical three weeks of training followed by a week of recovery, my training program is a bit more conservative with two weeks of training followed by a week of recovery.  While this may cost me a bit of fitness, I am hoping that a rested, healthy body will allow me to train harder and be faster in the long run!
-Another residual effect of chemotherapy is an elevated heart rate, especially while exercising.  My perceived effort just doesn't match up with what the heart rate monitor reads.  I recall this phenomenon after my first round of chemo in 2011, and for this reason I didn't even don a heart rate monitor for six months after treatment finished.  I am now almost six months out from finishing chemo, but I have also had radiation.  I am hopeful that my (exercising) heart rate will normalize soon.......That said, it is my understanding that at this time I am NOT at increased risk for exercise induced cardiac arrest.  So while it does perhaps affect how hard and ultimately how fast I am able to go, I am not going to let it slow me down (hehe, no pun intended).
-Neuropathy is also a common side effect of chemo.  While mine is mild, I do notice that my hands become cold and weak very easily.  Despite wearing the warmest cycling gloves I can find, when I return from winter rides my hands are so cold and weak and my dexterity so poor that I can't press the key code for our garage.  I don't miss the irony of the occupational therapist having poor fine-motor skills:)  Anyone want to help me develop heated bike grips?!?

So while I do have lingering effects from treatment, I really can't complain.  Considering everything..... I feel pretty damn good, my current status is NO EVIDENCE OF DISEASE, and since active treatment is over it is GAME ON!  First race in six weeks!  BRING IT!

The current state of my hair: 
 I'm probably told 5 times/day that I look good with short hair and
while I appreciate the complements, my opinion: Blah.
Certainly better than no hair at all, but does not come close to a ponytail. 
(My kitty's tail photo bombed this photo.  Looks like I have a tail:) 

Tuesday, February 11, 2014

Recovering from Bilateral Salpingo-Oophorectomy

Today is a big day.

First, I got a haircut.  My hair is not exactly long, but it was out of control and in need of some 'shaping'.

Post first haircut (20 weeks after finishing chemo)

Second, I am now two weeks out from my Bilateral Salpingo-Oophorectomy and 'officially' cleared to lift more than a milk jug (not that I drink milk:).  Hellllllo independence.  So many daily activities that I don't even think twice about require lifting.  Going to the grocery store alone?  Out of the question.  Grocery bags are heavy!  Carrying my bike up the basement stairs?  Nope.  Not even my bike weighs less than 10 lbs.  Even moving a student chair at work?  Well.  I admit I did do that, but very carefully:)

So while I am celebrating my increased independence, I do want to spend a minute reflecting on the recovery that has taken place these past two weeks.

Tuesday February 28th I underwent a Bilateral Salpingo-Oophorectomy.  It was an outpatient surgery which means I returned home that same day.  The gynecologist who performed the surgery performs this procedure routinely on patients with high risk ovarian cancer and/or breast cancer.  I felt very confident in his skills.  I detailed day of surgery here.

First, I want to say that my final ovarian pathology results came back negative.  No cancer whatsoever was found in my ovaries.  This officially made a crappy situation 'best case scenario'.  As always, I am thankful for small victories.

Recovery from surgery thus far has also been going very well.  I went into surgery after a solid block of early season training feeling fit and strong.  My plan was and continues to be patient with my recovery, erring on the side of caution, as opposed to pushing my body too quickly.  With everything my body has been through since May including axillary lymph node dissection surgery, chemo, radiation, and now oophorectomy, I truly feel that allowing my body to fully recover will help it to bounce back more quickly as I start to ramp things up over the next few weeks.

Here is my rehab over the past two weeks:

Post-op Day 1: Walking was still 'uncomfortable' at this point.  Went for a short, slooooow walk with Shannon and Dizzy.  I am a firm believer in walking as soon as possible after surgery to improve circulation, promote healing, and get the gut working again.  All I will say is that it worked:)

Post-op Day 2: Another short, sloooow walk.  My good friend drove all the way down to Salt Lake  from Midway to walk with me.  She led the doggies while I just tried to keep up and stay upright on the snowy sidewalks.

Post-op Day 3:  Today was my first day out of the house.  I drove myself to acupuncture which presented its own challenges.  Getting in/out of the car and onto the acupuncture table requires more abdominal engagement than I imagined.  I will say that I quickly learned many compensatory techniques on how to NOT engage the abs for these tasks.   I also went to the gym and sat on the recumbent bike for 30 minutes and went for an afternoon walk.

Post-op Day 4:  Went for a very easy and very slow hike.  Turns out uneven terrain also requires abdominal engagement which was 'uncomfortable'.  Who knew?  Rode recumbent bike again.

Post-op Day 5:  Same hike.  Twice as fast with same level of 'uncomfortableness'.  I took the increased speed as progress!  Tried to ride trainer.  Once again I underestimated to amount of abdominal engagement required to swing my leg over the bike and to maintain the lower, more aggressive body position on my road bike (versus the recumbent or stationary bike at the gym).

Dizzy on one of our hikes.  No he didn't dig the hole.  But he (obviously) wanted to see if he fit!

Post-op Day 6:  Resorted to the stationary bike at the gym as riding my road bike on the trainer was difficult.

Post-op Day 7:  Returned to work.

Post-op Day 7-11:  More easy hiking and stationary bike riding.

Post-op Day 12-14:  Easy road rides on MTB.  Hurray for beautiful winter weather and being able to ride outdoors.

For the past week, on a scale of 1-10,  I have maintained a pain level of less than 2 for all of my workouts.  My plan for the next few weeks is to increase duration, intensity, and structure of my workouts as my body allows without eliciting any pain or using medication to mask it.  I also plan to ease into some body resistance workouts.

Short-term goal:  Ride dirt the first weekend of March

Long-term goal:  Race April

Me and my boys

Wednesday, January 29, 2014

Surgery #5

I think I caught a few people off guard with my recent surgery.  Sorry about that.  Obviously it wasn't a secret....I blogged about it....but, honestly there are more fun things to talk (and think) about than an upcoming surgery.

So since Christmas break I spent most of my time and energy focusing on "other" things.

I consumed myself with gaining as much fitness and strength as possible going into surgery.   There I go talking about surgery again, but from experience I know the stronger you go in the stronger you come out!  This meant starting a structured training program for the first time since May.  It felt great to have workout goals every single day and since at the moment I am a self-coached athlete, I have been having a lot of fun developing a well-thought out plan for myself.  My program, with the immediate goal of getting me surgery ready and the ultimate goal of getting me race ready, has traditional on-the-bike workouts, however I have added an increased emphasis on weight/strength workouts.

The reason for this is twofold 1-Chemo has already made me osteopenic and my best defense against further bone loss is weight bearing workouts and 2-I could use a little extra strength, especially with an impending surgery and unavoidable downtime coming up.  Ugh.  Talking about surgery again!

My weight program is what I would consider moderately intense with a combination of plyometrics, kettle bell exercises, lots-o-core, and some arms.  By the time I am done I have worked up quite the sweat, but am not so wasted that I can't go for a ride.

So far, I am pretty psyched about my training program.  In a few weeks, I have gained considerable strength and fitness both on and off the bike.  I am now clearing technical obstacles and making steep switchback climbs that a few weeks ago I was struggling with.

One final weekend of desert bliss to divert my attention from surgery

In addition to training, and of course working, Shannon and I have consumed ourselves with getting our home ready to put on the market.  Nothing like adding a little bit of stress to an already stressful life, but this is a good thing.  We love, love, love our is perfect for us, however Salt Lake City's chronically poor winter air quality, has pushed us to move to higher elevation for the sake of our health.  Park City, here we (hopefully) come!!!!

That said, I remain passionate about working toward cleaning up the air in the Salt Lake Valley.  I truly believe that through proper regulation and individuals reducing their pollutant output especially on "high risk" days that Salt Lake City can be a healthy place to live year round.  For this reason, I have teamed up with a new non-profit organization, Athlete's for Clean Air, who is a group of athletes and outdoor professionals dedicated to changing Utah's air quality by addressing the root issues and providing real solutions.  I am proud, excited, and honored to be an ambassador for this group.  As an athlete, I constantly strive to be the best that I can be.  I am excited to work with this group to help Salt Lake City be the best it can be which is an amazing place to live!

Now for the inevitable surgery update and a bit of technical background:

Surgery #5 was an oophorectomy which means my ovaries were removed.  Why did I have my ovaries removed?  The simple explanation is that ovaries produce estrogen and my particular breast cancer utilizes estrogen to spread.  We don't want to add fuel to the fire of any potential renegade cancer cells in my body.   One may ask why my ovaries weren't removed back in 2011 at my original diagnosis.  That is because I was taking Tamoxifen, a Selective Estrogen Receptor Modulator (SERM), which means that it prevents estrogen from binding to and activating cancer cells.  Since the cancer cells in my axillary lymph nodes were growing despite Tamoxifen, it was determined that Tamoxifen (for whatever reason) was not very effective for me.  For this reason, I am now taking Arimidex, an Aromatase Inhibitor.  Arimidex stops the actual production of estrogen by the adrenals (fat, muscle, etc), however does not stop the production of estrogen from ovaries.  Hence the oophorectomy.  The hope is that depleting my body of estrogen will prevent this cancer from EVER coming back.  Lack of estrogen is not without side effects, but I am pretty excited that my gynecologist/surgeon who performed the surgery is an advocate for safe, natural treatments.  Estrogen replacement therapy for obvious reasons is NOT an option for me, so I am hopeful that my side effects are minimal.  Time will tell.....

Surgery went well.  I arrived to Huntsman at my scheduled 6:00 AM time.  It was so early they hadn't even unlocked the reception desk.

I was the first surgery of the day, arriving at a grueling 6:00 AM
 less than 12 hours after returning from St. George! 

As usual, the Huntsman surgical team took fantastic care of me.  It started out with a bear hug.  A "bear hug" is an air blanket that blows warm air.  Seriously, if I could just get a facial and pedicure it would be like a day at the spa, but in an ugly gown.

 Me with the "bear hug" blowing warm air over my entire body

The surgical plan was oophorectomy, however prior to surgery I signed a waiver that if anything looked suspicious and if initial ovarian biopsy came back with cancer cells, a full-on hysterectomy and lymph node removal would be performed on the spot.  (Note:  This surgery was to remove ovaries to stop estrogen production, not because of suspicious ovarian cancer, but you never know...)  Thankfully, everything looked good and I awoke happily to find three small incisions instead of a giant one.  Final pathology results will be back next week.    Additionally, I am happy to say that the anesthesiologists have my anesthetic cocktail dialed.  I pretty much wake up and am ready to go home.  Absolutely no nausea!  Yet another thing to be thankful for on this day!

Feeling pretty good post-op.  I love my anesthesiologists!  

Not bad numbers post abdominal surgery; especially that RHR

So, that is that.  I am hopeful that this is the last of it for a while as I have so much to look forward to in 2014.

Here's to moving forward.......

Note to self:  The morning after major abdominal surgery don't jump out of bed.  1-It hurts!  2-You will pass out from orthostatic hypotension.  Now that I have that figured out the day is going much better!

Wednesday, January 1, 2014

2013 in brief-Review

2013 started with optimism, joy, and hope that our toughest days were behind us.

Our 2013 Holiday card

We started the year off right with an amazing vacation to Tulum, Mexico where we chilled on the beach and explored Mayan ruins.

Tulum, Mexico:  In our opinion, the perfect combination of relaxation and adventure

Chichen Itza

We declared that we would celebrate every single January being cancer-free.

Winter training went well and my health seemed better than ever.  Early season race results confirmed that I was indeed fitter and stronger than ever!

On the top step at the True Grit 50 

Less than two years out from finishing treatment for my original diagnosis and I was starting to feel like a "normal" person, not a cancer patient; however as anyone who has been diagnosed with cancer and is at risk for a recurrence knows, there is always a small, lingering fear that it could come back.

In January, I pointed out a small nodule in my armpit to my oncologist.  She was not concerned, so I was not concerned.

Fast forward to May and I felt like the nodule was changing.  I no longer had to "dig around" to feel it, I could feel it while washing in the shower.  So the week after winning 12 Hours of Mesa Verde with my husband and teammate, I made the call.

The next morning I found myself back at Huntsman for an exam, which led to an axillary ultrasound, which was "highly suspicious".  A core biopsy was done on the spot and two days later it was confirmed that there was indeed cancer in the lymph nodes.

The following two weeks were filled with appointments to determine the extent of the cancer.  Multiple MRIs, a PET scan, and ultrasound were performed along with axillary lymph node dissection surgery which left me with a drain.

 I was looking pretty fit post-op

 ...and the monitor numbers don't lie

The JP drain to prevent fluid build up in my armpit post-op

Eight lymph nodes were removed; three of which had some cancer.

Our optimism, joy, and hope were replaced with confusion, sadness, and fear.

The consensus was that despite a negative sentinel lymph node biopsy back in 2011, the cancer had been lurking in my lymph nodes all along.  For whatever reason, I fell in the less than 5% of false negative sentinel lymph node biopsies.  MRI and PET scan results fortunately indicated no current distant metastases to other organs, however it was disconcerting that the cancer cells in my lymph nodes were growing despite my previous chemotherapy and current Tamoxifen use.

Further chemotherapy and radiation was indicated, however since I was an "unusual" case there was no research-based, statistically supported protocol to follow.

Thanks to some good friends, we were fortunate to have the opportunity to go to one of the best cancer facilities in the country, MD Anderson Cancer Center in Houston, Texas, for a second opinion.  Our trip was a successful one, and we came home feeling confident in a treatment plan.

In July, for the second time in two years, I was undergoing chemotherapy.  My regimen included three of the most toxic drugs including Epirubicin, 5-FU, and Cytoxan.

These drugs are so toxic that nurses have to "gown up" to administer

In addition to my medical treatment and self-directed anti-cancer diet, I started working with Nutritional Solutions.   With the goals of enhancing my cancer treatment while minimizing side-effects as well as supporting my body to ward off future recurrences through research-based anti-cancer nutrition and supplementation, I feel empowered that I am doing EVERYTHING I can to prevent another recurrence.

In anticipation of losing my hair, I got a short-sassy cut that I loved!

Can't wait till my hair grows out to this length again!

Sporting the bald look

Chemo days were dark days, however I tried to fill them with as much joy as possible.  I rode my bike to every single treatment and arrived with a smile on my face.

Getting in some dirt therapy prior to hitting the infusion room

Cancer has a funny was of bringing people closer or tearing them apart.  Shannon was once again my rock, validating that the BEST decision I ever made was marrying him!

May 2013 (Photo: Anna Pocaro Photography)

My crazy hound puppy became my best friend.  He would cuddle with me when I slept, go running/hiking with me when I felt good, and never commented when I looked like sh**.

I surrounded myself with people who were easy to feel joy around.

....and spent most of my energy doing things that made me happy.

Wasatch 360 relay race to raise money for Summit Bike Club

I finished chemo September 20th and three weeks later started radiation.

6 weeks and 30 treatments later I was done with radiation and celebrated with my first trip out of town since starting treatment back in July.  We spent 5 days at our condo in St. George, UT that we purchased this summer.  We were under contract with the condo just prior to my recurrence.  With so much uncertainty, I was tempted to back out of the deal, however following through with it can be classified as our best decision of 2013.  Every day I spend in our little desert retreat, I have to pinch myself that it is ours!

5 consecutive days of bluebird skies and desert riding

My holidays were spent with family and another trip to the desert.

Dizzy reading with his cousins

Helping Gear Rush Skills with their annual junior elite winter camp while on "vacation"

Lots of biking, hiking, relaxation and joy was had in this desert paradise!

When all said and done, 2013 can be summarized in numbers:
8 races, 4 wins
70+ doctor's appointments!!!
4 chemo infusions
30 radiation treatments
0 illnesses (colds, flu, etc....besides cancer)
510 hours on the Bike
168 hours cross training
and surprisingly, although not so surprising when looking back at the photos, lots of joy and happiness

Even though I have another surgery lurking in the near future (either oophorectomy or hysterectomy), Shannon and I are looking toward 2014 with optimism, joy, and hope that our toughest days are behind us.

Here's to a Happy, healthy 2014 and beyond!

Sunday, December 8, 2013

Catching up on the important things.....

Even though it has only been two short weeks since I finished radiation and just over two months since finishing chemo, thankfully both feel like distant memories.  Sometimes I love that my short-term memory is poor!  Seriously though,  there is so much (that I want) to do and even more to look forward to, that I hardly have time, energy, or desire to dwell on the past and am instead focusing on the future.  That said, I don't want to downplay how difficult these past five months have been.  Anyone who has been there, done that knows what I am talking about.......

Moving on.....Since finishing treatment, the past two weeks have been filled with catch up.  Not the bad kind of catch up like cleaning the house, running errands, or doing any of the other life tasks that have taken a backseat since I started treatment in July.  That can wait.  Instead, I have been catching up on FUN!  First up, was a trip to St. George.  I have been looking forward to this trip since, well, July.  It was to be my first trip out of town since starting treatment last summer, however as my skin reddened, burned, and became painful from radiation, I was concerned that I would not be able to mountain bike as planned on our trip.  Fortunately, my poor, radiated skin healed quickly and just in time for me to throughly enjoy our trip and feel "restriction free".

The human body never seizes to amaze me with its capacity to heal.

Above: my burns (almost) at their worst.  A few days after this photo was taken it blistered and became so tight that when I raised my arm it felt like my side would split open....fortunately it didn't!
One week after finishing radiation, my skin was healing beautifully.

Our trip was amazing.  Five fun filled days of mountain biking and visiting with friends.  Needless to say, I came home very satisfied.....and tired.  and unfortunately practically photo-less.  Here is one sweet video of me finally cleaning a techy downhill on Zen.  I proceeded to do it 4 more times!


This weekend, I was back at it, spending three consecutive days riding/racing my BMX bike.  It started with a race Friday night, clinic Saturday, and then another race on Sunday.  Lots of my mountain bike race pals came out to join in on the fun.

I'd consider myself closer to a beginner than pro BMX racer, but I somehow walked away with a trophy and.... lots of muscle soreness!

Giant trophies make me feel like a kid!

If you remember from my last post, this was also the week of me going into ovarian shutdown and starting a new medication.  Well, recent lab work indicated that two rounds of chemo have put my estrogen levels at nil, so no Lupron (ovarian suppression) shot was needed.  Apparently my body is already essentially in menopause.  Although this makes me want to say a giant boooooo, on the upside it is also reassuring because I seem to be tolerating low estrogen levels fairly well (i.e. I haven't gone (too) crazy yet).  Additionally, I was given the go-ahead to start my new long-term medication (Arimidex) and am happy to report that I have not noticed any significant acute side-effects.  On the downside,  I did receive some bad medical news this week.  My recent Dexascan (bone density scan) revealed that two rounds of chemo has resulted in osteopenia (bone weakening).  While I find this quite annoying, especially since one of the primary side effects of Arimidex is further bone weakening, I am taking action.  Research shows that high stress weight bearing activities can reduce and possibly reverse osteopenia.  Bring on the plyometrics, jump rope, and trail running!  All in all, I continue to optimistically look toward the future and a return to the life I so desperately want.

Up next, oophorectomy (ovarian removal) scheduled the end of January.  Even though my estrogen levels are low, my oncologist wants insurance that they remain that way.

You can bet I will be overdosing on fun until then!

Saturday, November 23, 2013

Radiation recap

6 weeks, 30 treatments.  Done!

I was prepared for radiation to be hard.  It was.  Just the scheduling alone was hard.  Balancing 5 days/week treatments with work, exercise, and taking care of my health was overwhelming in and of itself.  Add to that the side effects that increasingly crept up as treatment progressed, and....well, let's just say I am very happy to be done.

My axilla (armpit) was burnt the worst

You can see by the burns on my backside 
that radiation goes through your entire body including organs

Typical of myself, I pushed the limits as much as possible throughout treatment.

Six weeks is simply too long to neglect life.  I was determined to work, exercise, and take care of my body as best as possible.  While this definitely presented challenges, it was better than the alternative, and I did learn a few things along the way.

Here is what I learned:

1.  Some people may be good at flying by the seat of their pants.  I'm not one of those people.  Maybe it is because I like to accomplish a lot in a day.  Or perhaps because of my lack of control over my health situation right now.  Or even the fact that I have had over 60 medical appointments this year alone and get tired of my life revolving around appointments.  Regardless, the time of my daily radiation treatment could make or break a day for me.  I learned this quickly as initially my radiation schedule was very inconsistent, didn't jive with my daily routine, and sometimes would be changed on short notice.  Once we figured out and were able to maintain a more consistent schedule, my energy levels increased as well as my overall mood.  I am embarrassed to admit that there was one day I was downright cranky at my radiation appointment.  I suppose I am allowed to have an "off" day, but (medical providers and patients take note) my mood improved substantially as my radiation schedule improved.   A little flexibility from the hospitals part can make a BIG difference in a patient's mental well-being.  I was fortunate that the amazing staff at Huntsman was willing to work with me to come up with an acceptable schedule.  My point?  Find a radiation schedule that works for you, and if your schedule is not working, don't be afraid to speak up and change it!

2. Move.  Are you noticing a theme from previous posts here?  I always, always, ALWAYS felt better after exercising.  To be efficient, I would often ride my bike to treatment or take Dizzy with me and hike and/or run before or after treatment.  An added benefit is that the increased circulation and body heat generated from exercising helped keep my arm and shoulder loose.  I also found that as my underarm (see photos) became more irritated and raw, my cycling position with my elbows out was one of the most comfortable positions to be in!  Additionally, exercise is good for the lungs and may help prevent/reduce damage from radiation exposure.

A little mountain bike video

3. Along the lines of exercising the lungs, I utilized a Sports Lung and Incentive Spirometer (breathing tools).  My lung exercise regimen was to use the Sports Lung morning and night for 2x10 reps and the Incentive Spirometer after treatment for 10 reps.  I don't know if this made a difference in protecting my lungs, but I do know that I did not develop a cough or sore throat during treatment which is a common side effect due to radiation exposure.

3.  Take a break.  Sometimes 15 minutes of closing my eyes was enough of a rest for me to get through the rest of the day energized.  

4. Lotion.  I certainly didn't figure out a magic formula for preventing radiation burns (once again, see photos, I got burned straight through my body) but I do know that keeping the radiated skin moisturized was helpful.  The routine that worked for me was to use organic AloeVera immediately after my treatment.  Other lotions I experimented with throughout the day included calendula oil, calendula lotion, coconut oil, and beeswax.  My rule of thumb was simply to keep the radiated skin moist throughout the day and night, although my radiation oncologist didn't want any skin care products used for four hours prior to treatment.

5.  Stretch the arm and shoulder.  The exercise physiologist at Huntsman told me that throughout treatment and for the REST OF MY LIFE it is recommended that I stretch my radiated shoulder twice daily!  

4. Take care of the lymph system!  Women who have had a sentinel lymph node biopsy are at risk for lymphedema which is an incurable swelling of the arm that can become quite significant and debilitating.  This risk is increased by axillary lymph node dissection and then increased even more by radiation.  Since I have had it all, I am taking preventative measures very seriously.  I strongly recommend seeing a lymphedema therapist (usually an occupational therapist or physical therapist with specialized training in lymphedema) prior to starting radiation.  Baseline arm measurements can be taken, lymph massage can be taught, and a compression sleeve can be ordered.  I do a quick manual lymph drainage massage every single night to help support lymphatic flow and I have been wearing a compression sleeve while exercising.  I plan to continue this regimen post-radiation.

This is what lymphedema looks like (not my arm).
Fluid gets 'stuck' in the arm due to damaged and/or removed lymph nodes.  

6.  Get a compression sleeve.  A medical grade compression sleeve can be ordered through your lymphedema therapist.  This should always be worn when flying as the pressurized airplane cabin exasperates lymphedema symptoms.  Additionally, you may want to consider wearing a sleeve while exercising.  Since I don't have any active symptoms, I wear a more comfortable sports compression sleeve while exercising.

Sports compression sleeve 

7.  Breast massage:  My plastic surgeon recommended that I massage the radiated breast for five minutes twice daily to try to reduce scar tissue build up from radiation. 

8.  While everyone's skin/tissue responds differently to radiation, most women have some sort of reaction.  I was hoping to fall in the no reaction group and everything was looking good for the first three weeks.  However, week four my skin started to get red and by week five I had legitimate burns especially to my axilla.  By week six, my axilla was tight, tender, and peeling.   Not wanting to be slowed down, I found some creative ways to dress and exercise that reduced irritation to this tender area.

Here are some dressing tricks that brought me comfort:

  1. For the first four weeks I wore a Patagonia camisole instead of a bra and/or sports bra.  This camisole absorbed sweat, provided some (although not a lot) of support, and was very soft against my skin.  Sometimes, when not exercising, I would wear a tight cotton tank. While providing even less support than the camisole, these tanks were soft against the skin, and since there was no built in bra, did not rub the skin under my breast which was the first area to become irritated.  
  2. By week five, I could no longer wear tanks as a base layer.  No matter how soft they were, they rubbed my axilla which by this point was severely burned.  For work, I wore layers.  A nice wrap sweater over a cotton long sleeve shirt (even short sleeve shirts as base layers rubbed my axilla) worked very well.  For exercising, I wore snug breathable baselayer.  While this provided minimal support, it was better than nothing, and not exercising was simply not an option!  
  3. A camelback to carry water on bike rides was out of the question as it also rubbed burned areas, so I used a fanny pack to carry extra water bottles.  Not ideal, as it sometimes slipped and needed to be tightened, but better than nothing.
  4. When things got really bad, I used Mepilex dressing to protect the skin and reduce chafing.  

Many people think once radiation treatment is done, breast cancer treatment is over.  This is the case for some, but not for me.  I still have a few more hurdles.  On December 2nd I will get a shot (Lupron) that temporarily (for 3 months) suppresses my ovaries.  If I tolerate ovarian suppression satisfactorily, and don't, in my oncologist's words "Go crazy", I will be having yet another surgery (my sixth in three years) to have my ovaries removed.  Oophorectomy (removal of ovaries) eliminates the estrogen in the body produced by the ovaries.  I will also be starting a new long-term medication, Arimidex, which blocks production of estrogen by other sources including muscle and fat.  Since my breast cancer was fueled by female hormones, it is the consensus that reducing these hormones in my body provides me the best chance to live a long, cancer-free life.

I admit, having another surgery looming in the future as well as the thought of being forced into menopause at 38 makes me sad.  So, to bring a smile to my face, I will end this post with a funny story and happy news.  Most funny stories in our household involve Dizzy, our dog.  The other day I was running with Dizzy on the Shoreline prior to my radiation appointment.  He has been so good at staying close to me when off leash, however on this day he sprinted around a corner and instead of waiting like he usually does, he was gone.  I ran up and down the trail calling and looking for him.  No luck.  A few minutes later I got a telephone call from the valet parking guys at Huntsman.  Apparently, my naughty puppy ran down the hill to the hospital and right up to valet parking.  I was called and Dizzy was valet parked inside the hospital.  How's that for service? 

The happy news is that I am heading to the desert next week for a mountain bike filled holiday.  My first trip out of town since starting chemo in July.  Yippie!

Tuesday, November 19, 2013

Health Monitor: Breast Cancer Guide

I was recently interviewed and featured in the Fall edition of the Health Monitor Breast Cancer Guide.  The magazine is distributed to cancer facilities nationwide and is packed full of useful information.  I am quite flattered that some of my chemo tips were included in the magazine.