Thursday, July 20, 2017

3 Month Update

So today is 3 months since I finished radiation for DCIS breast cancer.  The actual breast cancer treatment wasn't too bad.  I was lucky.  I sailed through the surgery & for the most part the radiation was easy.  Fatigued yes but I got through it without any major illness or time off work.

Last Day of Radiation
I took May very easy.  I continued to walk instead of run.  I did a couple short bike commutes to work.  We had a great vacation in Washington. I came back to work after Memorial Day feeling healthy.  I continued bike commuting a couple days of the week.  I slowly started adding run intervals to my walks.  I even hit the pool in early June.

Shillito Pool
Then came the second week of June.  It started with a scratchy, dry sore throat.  Then a little burn in my lungs with any exertion.  I figured I had a cold or allergies.  Several folks I knew had hacky coughs so I figured  it was my turn.  I managed to stay really healthy all through the cancer treatment so I was due.  I went to the work doctor & he said it was just a cold.  So I didn't think much about it.  Just went on my way.

The problem was I just wasn't getting better.  I dialed my workouts down even more.  No more jogging, only 1 bike commute each week, used fins at the pool but nothing helped.  I was tired.

We went to New York to visit family for a long weekend at the end of June. We always hike & explore while we are there but this time I was perfectly content to sit & hang out all weekend. That damn cold was really hanging on. Over 2 weeks since the first symptoms.

Queensbury, New York - Mom, Grandma, Steven, Jason & me
The following weekend was 4th of July weekend & we headed to Savannah to visit Nina.  I had to take naps every day.  We barely did anything.  By Saturday I knew I was heading downhill fast.  We had rented kayaks & I could barely keep up.  The effort was exhausting.  I felt bad but I had no interest in exploring Savannah. Just the thought was exhausting. I was so freaking tired.

Tybee Island - Me, Nina & Steve
I had 2 extra days off at home thanks to the holiday so I was just trying to get home knowing I could rest.  By the evening of the 4th I was done.  I was coughing, barely could breathe & my chest hurt something fierce.  I thought I had bronchitis.  I called my GP office first thing Wednesday (7/5) morning.  Thankfully they were able to see me that morning.

To my surprise the doctor told me I had pneumonia or possibly radiation induced pneumonitis.  Huh?  I was stunned.  She sent me to have a chest xray to confirm.  While waiting, I was googling radiation induced pneumonia.  I didn't like what I read at all.

Later that afternoon the doctor called me to confirm that I had pneumonia & that I needed a CT scan.  They got that scheduled for Friday morning & she started me on antibiotics. By Monday (7/10) morning I had zero improvement so I called to schedule a follow up with my GP.  When she walked in she said they are trying to get me in with a Pulmonary specialist ASAP because my pneumonia was severe.  My entire left upper lobe was full of pneumonia.  The CT could not determine if it was bacterial or radiation induced.  She assumed bacterial so they gave me a shot of antibiotics & a stronger antibiotic prescription.  She also told me no work for 2 weeks.  I thought she was nuts at the time but believe me I have needed every bit of those 2 weeks off.

I went to the Pulmonary specialist on Tuesday (7/11) morning.  He showed me my CT scan & explained how the next couple of weeks were going to go.  He re-iterated that they couldn't tell if the pneumonia was bacterial or radiation induced without a lung biopsy.  He treatment plans were this: 14 days of strong antibiotics & steroids.  If I get better, then it's bacterial.  If I am the same in 1 week then we do a lung biopsy.  If I get worse, go straight to the ER.  No exercise, no work, no being outside in the heat until I start to feel better.  Period.

See all that white?  That's pneumonia.
That bright white spot is most likely pneumonia on my right lung
Well, you would think being cooped up inside in July would be the worst thing in the world for someone that enjoys being outside & active.  The reality was I was so miserable I didn't care about the mandatory couch time.  The first 10 days were spent sleeping 9-10 hours each night, a morning nap & an afternoon nap.  When I was awake I watched the Tour de France & HGTV.  Each afternoon I would try to spend a few minutes online checking work emails but that was pretty much the extent of my working.

I had such a hard time determining if I was feeling better.  The improvements were so minor.  I remember telling the doctors that if I stay still & don't move I could convince myself that I am feeling better but as soon I got up it was a completely different story.  I was exhausted.

I had my first follow up with the pulmonary doctor on Tuesday (7/18).  I had little to go on from my perspective on whether or not I was truly improving.  I resorted to my Garmin data & a couple of things others said to me.  First, one of my friends said it didn't sound like I was as out of breathe when I spoke.  OK, that's good.  I still felt like I was out of breathe but that was good feedback.  Second, the same pulmonary nurse saw me each week & she said I looked better even though I still felt rough.  The rest was on my Garmin data. Yeah, total data nerd.

I looked at Garmin Connect to check my average resting heart rate & sleep trends.  My average resting HR on June 4th was 57 bpm.  Through the month of June it creeped up to a high of 67 bpm by July 2nd.  I started antibiotics on July 5th.  By July 9th it was down to 60 bpm & by the 18th it was down to 54 bpm.  The antibiotics & the rest were clearly helping even if I didn't feel better.

The next thing I looked at was my deep sleep time.  Prior to starting antibiotics my deep sleep was 3-4 hours per night even though my total sleep time was 9-10 hours each night.  After two weeks of antibiotics I was sleeping deeply 5-7 hours each night out of the 9-10 hours.  I interpreted that as I was breathing better & not coughing nearly as much in the night.

Using this data & feedback from others we decided to delay the lung biopsy which relieved me greatly.  This was not something I wanted to do AT ALL.  My next follow up is 7/31 & I am optimistic that I will be feeling much better.  I still have a few days before going to work but I have gone 2 days without a nap.  I have much more mental energy than I did even earlier this week.  I am definitely breathing better.  I am still very fatigued & don't see myself doing any real workouts for several more weeks.

In addition to my inhaler optri-chamber, I got a breathing apparatus called a flutter valve this week.  The way the pulmonary nurse practitioner explained it was it is like doing bicep curls for your lungs.  I use it 6 times a day & I noticed right away that it noticeably improved my breathing.

Flutter Valve

The doctors said the total recovery time was 8-12 weeks provided I don't have any other underlying issues.  I go back on 8/21 for a follow up CT scan to see how much my lungs have cleared up.  At that point we should be able to determine if this was just a nasty case of pneumonia or something else is lurking.  Fingers crossed it is the former.

Sammie - My couch surfing buddy
While on rest, I have thoroughly enjoyed watching the Tour de France this year.  I have watched all but 2 stages so far.  It has been the highlight of my days this month while recuperating.

Conversely, I am entirely sick of HGTV.  I'm so over those shows. I think HGTV will now always remind me of radiation treatment & pneumonia.  That channel is always on in the waiting rooms.

I read a few free prime books this month nothing worth noting.  Just easy reads. My biggest accomplishment this week was that I finally got our paperwork in order to meet with a financial advisor. I have been putting that off forever.

Tomorrow I go for another craniosacral massage.  It helped a lot during radiation treatment so I am hoping it will help a bit with my fatigue since Monday I go back to work. I am hoping that I can make it a full day but we shall see. 

Stay healthy, y'all!

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