Neptune Festival - "Run, Run, Run!"

Since going back to work early August, I had felt pretty overwhelmed between work, doctors appointments, treatments, and trying to stay on top of my health.  It really had not been going well at all.  I was mentally and physically exhausted, and I found myself stress eating often.  I had regained the weight I'd lost during the 4 weeks I had off from work after the surgery.  I was not feeling healthy at all.  A week into my FMLA for radiation treatment though, I was starting to feel a little better.  This weekend was Neptune Festival, and I wanted to go see the sand sculptures and other festivities going on at the oceanfront.  I just needed to do something fun, something to remind myself why I'm fighting to live. Coincidentally, a friend reached out and wanted to do the same.  I did not feel too well the Saturday, but I felt I could manage on the Sunday so we went. 

Every year at the festival there is a sand sculpting contest and that was our first stop.  There were many very beautiful sculptures.  There was one in particular though that really spoke to me and was my vote for People's Choice award.  The sculpture was titled "Run, Run, Run!" by sculptors Thomas Koet of USA and Nikolai Torkhov of Russia.  It was less about the artistry than the theme to me, but it did win 3rd place so I think it must've spoke to some of the judges too.  

Life is short, slow down so you don’t waste it! This sculpture is about the busy times in our lives, where we rush, day in, day out just to get through the week. It is so easy to forget to take a breath and try to enjoy our lives but we might miss out if we don’t take a break every now and then.

On one side of the sculpture there was a man hooked up to an IV, wearing a suit and running to work.  First thing that crossed my mind was "That's me!"  I had been trying to juggle work while undergoing cancer treatment, which has been stressful in many ways. I finally came to my senses and took FMLA/STD again starting this week but I wondered what the future holds for me.  What if I don't tolerate my medication well and feel sick all the time?  What if there is a recurrence?  What if I want to live a healthier lifestyle not working at a desk 40 hours a week?  The healthcare system in US is very expensive so health insurance is very expensive.  If I lose my current work benefits and had to go on COBRA for health insurance, it would cost over $800 a month.  I asked my company a few weeks ago if reducing my work week to 30 hours would be possible.  They said "no" - I had to use FMLA.  What happens when FMLA runs out and I get sick again?  I was really disheartened by my company's policy.  Many people probably continue to work even when they are ill just so they can keep their health insurance.  This is no way to live.  Working 40 hours a week is BS.  Having only 3 weeks of PTO is BS.  Working to age 65 is BS.  I need to get out of the rat race asap.

Radiation Week 5

By this week I was getting tired of trying to work while getting treatments. I woke up not feeling well the Monday and decided to take a day off.  By end of the day, I decided I can't go on like this and requested FMLA and STD for the next 5 weeks.  I cancelled my business trip that I was originally looking forward to.  As treatment went on though, I knew it would be tough on my body to try to go.  I had stopped wearing a bra by the second week of treatments and I couldn't imagine going the whole week with it on.  I also had another week of treatments before the trip and things were only going to get worse.  My supervisor is pretty understanding and missing the business trip wasn't going to be a big deal.  Even if it was, the only thing on my mind now was getting through these treatments and getting better. 

By now, my underarm had started burning pretty badly.  Early on, I did not realize the extent of the treatment area and may not have applied the Strata cream or moisturizer properly in some areas.  The burn came on suddenly though and it had gotten painful since the skin under the arm would crack if I reached for anything.  All the radiation doctor offered me during this week's skin check was to put hydrocortisone on it if it itches.  My skin is pretty unhappy, but I went on to finish the 25 days of whole breast radiation.

Radiation Weeks 2-4

During the second week of radiation they took off some of the stickers.  I realized then that they had tattooed me with blue ink rather than the pink as discussed with the doctor (I have fair skin).  I couldn't believe they made such a mistake and again I was upset.  I don't like tattoos and didn't want tattoos but I deemed it as something medically necessary so I went with it.  Then they mark me with a color that would be quite noticeable on my skin.  It would be visible if I wore a bikini (yeah, 50 somethings do wear bikinis) or if I went to a public bathhouse (I visit Japan often).  Between this and the scheduling mistake of last week, my opinion of this practice was getting pretty low.  When I mentioned it to the doctor, she said that she can put in a referral to get them removed after the treatment finishes and skin heals.  Since it can take months to get an appointment in some places I asked for the referral right away.  The next day I got a call from the dermatology office where she sent the referral.  They didn't do tattoo removals or accept new patients.  Another let down from my radiation doctor.  

The second week was a shorter treatment week since Labor Day was Monday.  I stayed on top of moisturizing the area.  I'm starting to see more redness and hyperpigmentation.  Fatigue levels varied throughout the week.  Some days I felt ok while others were a struggle.  Since any time I take off under FMLA would be unpaid (I only have a few hours of PTO built back up after surgery), I tried to make up all hours I missed.  It was kinda tough.  I was also feeling some nausea this week.  The doctor said that the radiation shouldn't cause an upset stomach.  Maybe I ate something bad.

The third and fourth week didn't get any easier.  Skin is getting darker and I'd still have some bad days fatigue wise.  I wanted to keep up with my exercises though, so couple days a week I would go to the gym.  I didn't have time to go to the garden for long walks but on days I didn't go to the gym I would walk around the apartment complex for about 20-30 minutes day and night.  Every day all I could manage was some form of exercise, work, treatment, eat and not much else. I found myself working late a lot of days since I was working on some really challenging tasks. My doctors appointments also weren't limited to the radiation treatments so on some days I missed more work. These last two weeks I had two radiation sessions on the Friday.  The day after those double doses, all I did was sleep all day.   

Radiation Treatment Week 1

On the first day, they made sure things lined up still but didn't do any actual treatments that day.  They gave me my schedule and told me when to come back the next day. My appointment was scheduled for 3:15 but I had to come in 30 minutes early so the doctor can make sure my incision site that I tore open the week before has closed.  

The next day I went in at the time I was told but the folks up front told me my appointment wasn't until 4:15.  There seemed to be some mistake.  I asked if I should go home and come back and they said "no, we'll get you in."  So I went in to change and waited.  The doctor saw me but then I had to wait... and wait... and wait some more until 4:15 when I actually got my treatment.  I was pretty upset.  Work has been busy and stressful, and I was going to have about 5-6 hours of work to make up each week because of the treatments.  My time is valuable, and I didn't have an hour to waste.  I was pretty sure I was told my appointment was at 3:15 and I needed to show up at 2:45.  The nurses also checked though and said my appointment was at 4:15.  I thought maybe I was losing my mind.  Then I go home, look at the written schedule they gave me, and notice that I went at the correct time.  The only explanation was that someone changed the schedule since it was printed and no one told me.  Very annoying and a little concerning.

The rest of the week went a little smoother.  Check-in is usually really fast and I walk myself to the back to change into a gown and put Strata on.  They say to get there about 10 minutes before.  Sometimes I wait a bit, but at other times it goes a little faster and I can be in and out in about 30 minutes.  Foruntately, the cancer center is less than 10 minutes from me.  I hear some people in rural areas drive hours to their nearest facility for treatment.  I don't know how they do it.  I guess you do what you gotta do.

By the end of the first week I started noticing discoloration and hardening of the skin on the nipple.  It was upsetting to see.  My poor booby is going through so much.

Surgical Wound Reopens - Radiation Treatment Delayed

It takes about a week for the radiation oncologist to plan out the treatment and to get insurance approval.  The latter seems to occasionally cause delays, but mine seemed to have gotten through just fine.  I was slated to start radiation treatments later this week.  I had a business trip the week of September 29th, and the goal was for me to finish my 25 whole breast radiation before I leave, and then to come back and do the 5 boosters after I get back the week of October 6.  I was supposed have the practice run on August 21 and then start treatments on the 22nd.  However...

Now nearly 6 weeks out from surgery, I had gotten the all clear from my surgeon on physical activity the week before.  I hadn't resumed my indoor climbing gym membership yet, but I had my rec center membership and was making an effort to go to the gym few days a week.  Up until now I had been sticking to stationary bikes and really easy weights. Although some pain remained at the surgical site due to fat necrosis in the area, I was starting to feel pretty good and wanted to start doing more so I can get back to climbing.  Yesterday, I decided to try the elliptical machine.  Then after that I decided to try out assisted pull-ups and dips.  Big mistake.

I pulled my back muscle a little but that's not the problem.  I ended up busting open the surgical site on my outer right breast.  This was the surgical site for the actual cancer (if you recall I had two other surgical sites that turned out to be benign findings).  Unlike the incision site at the nipple, I had not had any issues on the side so I was startled to see a bit of blood.  It was a tiny amount, but it indicated that the wound had reopened.  I had to go in to see the radiation doctor who confirmed that there is now an open wound.  I had to delay my treatment start by about 5 days, at which time the doctor will check to see if I'm good to go before starting.  They also had to rearrange my schedule so that I would have couple of days where I would go in for two sessions 6 hours apart, so that I could finish my 25 treatments before my business trip.  I was also told to take it easy on my upper body for a while.  I had to be sure not to stretch out that area and do anything that would risk opening the wound again.  I guess I will not be resuming my climbing gym membership just yet.  

Radiation Simulation

 About a week after the initial consult I went in for a simulation.  During this appointment they created a mold of a cushion that I would lay on each time.  They also permanently tattooed three little dots on me so they can use it to align their machine onto me.  They also made a lot of other marks all over my chest with a pen and placed several stickers. They also did a CT scan of my chest area, which they will use to plan out my treatments.  

I also found out during this time that I would need 30 sessions instead of the 21-25 initially told. 25 full breast treatments and 5 boosters that target the area where the cancer was.  I didn't really get a good explanation for the change except that she sized me up incorrectly during initial consult.  

Consult with Radiation Oncologist

My first consult with the radiation oncologist was about a month after my surgery.  The doctor spent some time explaining the role of radiation in cancer treatment.  Radiation treatment to the breast is to kill any remaining cancer cells in the area from surgery.  Although I had a lot of reservations about radiation treatment, I decided to proceed with it since I wanted to reduce the chance of recurrence the best I could.

I had hoped for a targeted treatment where radiation is directed only in the area where I had cancer.  However, since the margins around the DCIS found during surgery did not have sufficient margins, she insisted on a whole breast radiation.  During the consult the doctor estimated I would need 21-25 sessions of treatment.  It would be everyday, Monday through Friday, for 5-10 minutes.  No treatments on the weekends or holidays.  Once a week, on Tuesdays, I would stay afterwards to be examined by the doctor.

The doctor recommended a prescription cream called StrataXRT to put on immediately before each session.  Insurance did not cover this though, so I would have to pay $89 out of pocket.  It's supposed to provide a protective barrier.  I looked it up after getting home and it seems studies show its benefits to be inconclusive.  The doctor also gave me a sample of Eucerin to moisturize the affected area at other times of the day.  Nothing besides the StrataXRT can go on my skin within 4 hours of treatment though.  The treatment area included the area under my arm, so no deodorant use for a while.

I was sent home with a booklet with some information on radiation and side effects.  Nothing in today's discussion or the booklet prepared me for what I went through with these treatments.