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!