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.

Saturday, November 9, 2013

Athlete's Guide to maintaining fitness during chemotherapy

Back in 2011, I wrote this post: Tips for Staying Fit and Healthy While Undergoing Chemothreapy.  I can say with 100% certainty that not only was I able to maintain health and fitness during chemo in 2011, but I was able to build and regain a very high level of fitness post-treatment.  Women often speak of their new "normal" after undergoing breast cancer treatment.  My new "normal" was healthier, fitter, and stronger.

May 2013 (Photo: Anna Pocaro Photography)

That was until my axillary recurrence this May and four more rounds of chemo followed by radiation.  Between chemo, radiation, and surgeries, I have spent 1.5 of the past 3 years undergoing active cancer treatment!  Based on my unwanted, however increased experience with maintaining health and fitness while undergoing chemo, I am expanding my list of tips.

11 Tips to Staying Fit and Healthy During Chemo:

Tip #1:  Move!  While it is easy to justify laying on the couch when you feel crappy, there is a time when you just need to get up and start moving.  Start with a walk and stretching and build from there. I absolutely guarantee it will make you feel better.

Getting out and moving with my pal, Dizzy

Tip #2:  Take your anti-nausea medications.  I'm not a big fan of filling my body with potentially unnecessary medications, however it is hard to stay active if you are hovering over the toilet, and once the nausea sets in, it is difficult to overcome.  Stay ahead of the nausea and take those darn anti-nausea least for the first few days after treatment.

Tip #3: Nutrition.  Indulging in a sugary treat feels good for about 30 seconds.  Eating a well balanced meal helps you feel good all day.  Cooking healthy can be time consuming, however with experience and planning it becomes quite manageable, and certainly worth the effort.  I plan a dinner menu for a week at a time and build a shopping list.  While creating the weekly menu does take time, I save time at the store being more efficient and don't waste precious time by avoiding last minute trips for missing ingredients.   When planning my menu, I schedule meals that require more prep for less busy evenings and make enough for leftovers to last 2 or 3 more meals.  The rest of the nights of the week, healthy meals are prepared in less than twenty minutes.  

Tip #4: Don't be afraid to exercise routinely.  Research shows that women who exercise during chemotherapy experience less side effects from treatment.  If nothing else, let that be your motivation.  Chemo side effects suck!

Tip #5: Combine cardio, weights, and stretching.  My chemo exercise regimen included cardio at least 5 days/week to increase circulation, flush toxins out of my body, and help maintain my cardiovascular fitness.  According to one of the exercise physiologists at Huntsman, cycling is one of the very best activities for increasing circulation.  Convenient for me!  The duration and intensity of cardio should be dependent on fitness level prior to starting treatment and remember that even when you are moving slowly you are still moving faster than if you were on the couch!

I also included a weight/core workout 2-3 times/week.  This is especially important for women undergoing chemo and even more important for young women.  Chemo causes hormonal changes simulating menopause which puts us at significantly increased risk for osteoporosis and bone fractures.  A solid whole-body weight program can help maintain bone integrity.  Additionally, maintaining muscle mass helps burn fat more efficiently.  No fancy gym membership is needed.  All of my exercises were done with 8 or 10 lb. hand weights, a 10 lb. kettle bell, therapy ball, and a weighted vest.  My favorite exercises were a variety of squats, lunges, jumps, and kettle bell swings-I prefer whole body moves as opposed to focusing on single muscle groups as they are more efficient when time crunched.

Squeezing a weight workout in the comfort and convenience of my home

My core program focused on both abs and back extensors.  Additionally, side planks were done every single session.  Maintaining shoulder stability and mobility is especially important for women who have undergone breast surgery and radiation.

I also incorporated a short stretching session every single day with an emphasis on shoulder mobility and tight cycling muscles.   

Tip #6:  Plan ahead for workouts and keep a training log.  Fitting workouts in may seem overwhelming, however it too is manageable with some planning.  Although I love riding my mountain bike in the mountains, somedays in order to squeeze a ride in, I would resort to riding the foothills near my home.  Additionally, when possible, I would ride my bike to doctor appointments and always to chemo.  Not only was I squeezing a workout it, but I was arriving to the hospital relaxed and with a smile on my face!   Weight workouts and stretching can easily be done at home.  A solid weight workout can be done while dinner is cooking and stretching has become part of my nighttime wind-down routine.

You can see my 2013 chemo exercise log here.

Tip #7:  Make a list to help with time management.  I found that while undergoing chemo I became more easily distracted and if I didn't have a plan in place for the day I could burn hours doing......nothing.  A simple list of daily tasks helped me stay focused, relaxed, and productive.  Ha!  This is even helpful when not undergoing chemo! On my daily list I may write specific workouts to accomplish, errands I need to run, and food I want to prep.  

Tip #8:  Make exercise fun.  Do something you enjoy with people you enjoy.  Many of my rides turned into social events.  Talk about multi-tasking; I was able to socialize with friends while doing something I love AND exercising.

Riding with one of my favorite buddies

Tip #9:  Pay attention to how your body feels, but understand what it is telling you.  For example, while undergoing chemo I learned that even after a restful night my body often felt sluggish in the morning.  If I didn't know better, I would probably think that I needed more rest, but most of the time a morning workout helped improve my energy throughout the day.  Make sure to get plenty of rest, but don't be afraid to push yourself.

Tip #10:  Protect yourself from illness/infections.  Frequent hand washing is imperative to reduce risk of contracting colds and flu.  While It may seem impulsive to wash your hands multiple times daily, I did this and was fortunate to not experience a single cold while undergoing chemo even though I work in public schools and did not get Neulasta to support my immune system.   Additionally, mountain biking is an inherently dirty sport.  While mountain biking, scratches from tree branches, scrub brush, and tall grass are imminent.  To protect my skin and decrease my risk of infection, I wore long socks and arm coolers.   Despite my precautions I still sustained a fair share of small skin abrasions.  I would shower right after my rides, use tea tree oils on cuts, and fortunately I did not experience any infections.

Mountain biking in CEP arm coolers and tall socks to help protect skin from abrasions

Tip #11:  Finally, allow yourself to feel empowered by taking care of your body.  Know that while maintaining fitness and healthy nutrition you are doing your best to protect your body from cancer and help it to tolerate treatment better.  

October 2013

Other tips:
1-Coconut oil:  Chemo makes skin dry, scaly, and delicate.  In my opinion, coconut oil is the best all natural skin moisturizer!  I used it all over my body especially on my hands, feet, and hairless head! 
2- Mouth care: Chemo can cause mouth sores and tooth sensitivity.  A soft toothbrush and sensitive tooth toothpaste made a big difference.  Additionally, brushing my teeth after every single meal helped reduce mouth sores and the metallic taste that chemo causes.

Tom's Sensitive:  My favorite chemo toothpaste

3- Buff head band:  I tried trendy scarfs, but found that my Buff headband looked just as chic, was simpler to put on, and cooler when temperatures were warm.

4-Don't force yourself to eat your favorite foods or foods that are essential to a healthy diet (like kale) on your bad chemo days.  A strong aversion to these foods, referred to as the "scapegoat effect", may develop.  On these bad days, when nothing tastes good, eat foods you are willing to part with.  I was able to break my addiction to cereal by eating it on my bad days!

6-CEP compression:  I remember from 2011 the heavy feeling in my legs every morning.  Athletes call this lactic acid buildup.  Wearing compression sleeves on my legs during the day helps them to feel so much better.  This morning lactic acid buildup lasted a full year after I finished treatment in 2011 and it has returned since finishing my second round of chemo in September.

Radiation update:  Four weeks down, Two to go!!!!!!  Radiation post to come soon!