Thorn in the flesh update

So after throwing myself a pity party on Monday night, I got a good night of sleep. Things definitely felt better in the morning, even if my arm was still puffy.  It helped to go to bible study the next morning and be supported by my sisters in Christ there. I realized that lymphedema is my thorn in the flesh. We all have one. This one is mine. It's a bummer because it reminds me of the fact that my body has been forever changed by what happened three years ago. I can run miles and miles, do things I never thought I could physically do. But I will forever be changed because of breast cancer.

I've been pretty aggressive about staying wrapped in my full set of bandages most of the time. I let my arm out for air for a few hours in the late afternoon. Otherwise, I'm all wrapped up, or at a minimum I have my compression garments on. It is hard to move the arm all wrapped up, but I think that is what helps move the fluid through-the combination of compression and movement.

Is it working? I think so. I just had Eric re-measure my arm. This is now 48 hours since the last measurements.  Here is where I stand as of this afternoon:

	goals	best	03/25/13	03/27/13
Knuckles	under 20.0	19.2	19.2	19.3
Wrist	under 16.0	15.8	16.5	16.1
5 c.m.	under 17.5	16.5	18.8	19
10 c.m.	under 21.5	21.3	23.5	24
15 c.m.	under 25.0	24.5	28	26.5
20 c.m.	under 26.0	25.5	27.3	26.5
25 c.m.	under 26.6	26	28	27
30 c.m.	under 28.5	27.9	29.4	28.7
35 c.m.	under 30.0	29.7	31	30.6

Numbers in black means that the measurement is on target. Numbers in orange mean that it has improved (gone down), but still is too big. Red means they have increased.

At first I was bummed to see a couple of reds, but when you look at it, they are only up .5 cm at most. My physical therapist always said that a change of 1 cm was the threshold of being significant. So a .2 and a .5 increase isn't a huge deal-in fact, it can be attributed to variances in the measurement. (Yeah...let's blame Eric for bad measuring, lol!)  But when you look at the orange numbers and compare them to the reds from 2 days ago, the decrease is significant in several places.

So we are going in the right direction. I just need to keep doing what I'm doing for awhile longer. Ideally, I'd like to be back in the black in all spots. I'm not sure where I started, honestly. I had gotten lazy about taking care of it and I know my arm was bigger in some places.

I appreciate everyone's prayers and support. I have been blessed this week with so many friends showing concern and love. Thank you so much.

I guess this is why it's called "chronic."

Well, my lymphedema has decided to rear its ugly head. Sigh.  I don't really know what triggered it. Perhaps it was me riding my bike more last week?  (I took a week off of running to let my right shin get rid of some discomfort. I rode my bike over 84 miles last week.) Perhaps I jammed my hand during my duathalon? Perhaps the weather? Who knows. It is what it is.

It has been quite awhile since I've had a flare up. Sure, my arm and hand would swell a bi† while I was training and doing the 3 Day. Walking 6+ hours a day will do that to anyone. But aside from my ini†ial flare up back in December 2010, this is the worst it has ever been.

I think I've been kind of slowly swelling in my arm. Nothing major, and I just decided to live with my left arm being a bit bigger than my right. But then about a week ago, my hand started puffing up. I started back up with the manual drainage massage at night and bandaging. I didn't see a whole lot of change, but kept it up. Last Thursday night, I was particularly tired. Rather than bandaging, I used my Juxta-Fit sleeve and glove. The next morning, my hand was like someone had blown air into a surgical glove. Not pretty.

Last night, I decided to give it a rest overnight and see what happened. I dreamed that my arm blew up like a balloon. When I woke up, it didn't seem too bad. I went on a 10k run and was feeling good, not focused on my arm at all. (I always wear compression sleeves when I work out, by the way).

My in laws are visiting from France right now. I thought it would be fun to bring my mother in law with me when I picked Jean-Marc up from preschool today. I figured she would enjoy seeing a slice of his little life. I was right. He enjoyed showing her around his school and introducing her to his teachers. They took a picture of his teacher and us in his classroom, it was really sweet.

A few hours later, I saw the picture. My left arm is front and center and my lower arm/hand especially looks foreign to me. Oh my gosh.. that's how it looks? Really. Look at my wrist/hand. Thankfully, the worst part is cut off in the photo.

I need to do something. Now.

I had Eric help me measure my arm. I have always kept track of my measurements on a spreadsheet. When I opened it, the last time we measured was September 2nd.  I started the spreadsheet back in early 2011. We measure at various points on my hand and arm: knuckles/palm and wrist. Then from the wrist, every 5 centimeters up my arm. For each measurement, I have an "ideal" that my physical therapist and I set way back when. The bottom line was that I am up significantly in all but one measurement....my hand.

	goals	best	7/11/2011	09/02/12	03/25/13
Knuckles	under 20.0	19.2	19.8	19.7	19.2
Wrist	under 16.0	15.8	15.6	16.1	16.5
5 c.m.	under 17.5	16.5	17.2	17.7	18.8
10 c.m.	under 21.5	21.3	21.6	23.2	23.5
15 c.m.	under 25.0	24.5	24.5	25.8	28
20 c.m.	under 26.0	25.5	25.2	25.5	27.3
25 c.m.	under 26.6	26	26.2	27.2	28
30 c.m.	under 28.5	27.9	28	29	29.4
35 c.m.	under 30.0	29.7	29.8	31.2	31

I went upstairs at 5 p.m. and did massage and wrapped my arm up. I was a little disappointed not to feel the tell-tale "tingle" that the massage is actually moving the lymphatic fluid. But whatever. I'm going to either wear the bandaging or compression sleeves for a few days and then re-measure to see if its helping. If not, I guess I'll give the physical therapist a call.

So your prayers would be appreciated. Frankly, it sucks to have to wear bandaging when I'm not sleeping. Poor me, pity party. Sorry. Lymphedema is something that is part of my life. I've had a stretch of several months without being symptomatic, but it looks like that is over. At least for now. I guess that is why its called a "chronic" condition.

Poser no more!

I know it has been quite awhile since I blogged. In a way, its a good thing. While not a day goes by where cancer/recurrence does not cross my mind, I have been able to kind of move on and be busy with life. God is good!

One of my goals this year was to get into doing triathalons. As part of that, I joined the Tri Club of San Diego (TCSD).  I first heard about the Tri Club when I bought my bike last fall. The guy I bought it from recommended it since they have group workouts, practice races, and was full of nice and helpful people to a newbie like me. I went to a informational meeting last January and joined that night. At the meeting, I got the cool "Tri Club of San Diego" sticker and put it on my car. Time to start thinking of myself as a triathalete, right?

But I felt like a poser.

I wasn't a total slug-I was training for my first half marathon of the year after all. Who had time for the biking and swimming. I finished the Carlsbad Half Marathon on January 27th at a respectable pace. Not a personal record, but not too bad. (I still would like to break the 2 hour mark-this time was 2:08 and change).

Then I took a daring step and signed up for my first sprint triathalon. That is coming up in May-the Encinitas Sprint. I'm doing it with another survivor friend of mine, one that I met doing the Komen commercial awhile back. (Hi Nancy!)

Time to seriously think about training, even though I still am focusing a lot on running, since I have the La Jolla Half Marathon in April-a notoriously tough race. Those who have done the San Diego 3 Day-it is basically that first half of the first day up Torrey Pines from Del Mar to La Jolla Shores.  But I still needed to start doing more biking and swimming. (Don't even get me started on my need to get used to swimming in the OCEAN....)

One of the cool benefits of TCSD is club races. They are free to sign up, they are timed, and its a way to race/practice/work the kinks out. This morning, I participated in my first club race-the Carlsbad coastal duathalon. A 2.5 mile run, followed by an approximately 12.5 mile bike ride, finishing up with the 2.5 mile run again. On paper, it didn't sound too bad.  And honestly, on the road, it was doable. My main goal was not to be last.

I learned a lot from it!

I showed up early-they said to check in between 6 a.m. and 7 a.m., with the race starting at 7 a.m. I am always early to stuff, being late stresses me out. So I showed up at 6:15 a.m. They aren't even set up. I didn't know a soul, and they all looked like serious athletes. Intimidation!  Not that they had attitude, not at all. They just knew each other and did this a lot.  I felt my goal of not wanting to finish last and not totally humiliate myself slipping through my fingers!  I felt like a dork just standing there, so when everyone started helping set up, I went over too. They were unloading these long wooden boxes with pieces to put together. It reminded me of a challenge you would see on "Survivor." Turns out they were racks to put bikes on. It was kind of funny to be putting it together, when I had never even seen one before, but I just faked it and did what everyone else did.  When they were open for signups, I checked in and got my timing chip. You're supposed to wear it around your ankle. Cool.  But the note that came with it said it needed to be activated online. Okay--I have an iPhone. So I entered the code and all on the TCSD site, but it didn't recognize it. Sheesh.  Okay, well, I have my nifty new Garmin 910XT that can tell me my time, and this is just for practice anyway, right? So I left the timing chip in the car.

Matt and me pre-race

My friend, Matt, showed up with his wife and one of his kids. It was great to have someone to talk to. Matt helped me program the Garmin for the duathalon so I thought I was all set. After a quick trip to the bathrooms, we were ready to go!  There were not that many women-I would say 10 or less. And most of them looked uber-fit as well.

The first leg of the race was fine. I actually did a pretty awesome pace for me-in the 8:30 range. That made me happy.  I came back to the transition area to get ready for the bike. I hit the button on my watch and started changing my shoes.  My bike shoes are easy to get in/out of, no problem. Helmet? Check. Sunglasses? I didn't wear them for the run, but I like to wear them on the bike because it protects my eyes from the wind. I put them on and they instantly fogged up. Ugh. That'll go away-just keep moving. Gloves? I start to put them on and THEY ARE INSIDE OUT! Argh! So I'm messing around with turning them right side and sticking my hand in one. I'm halfway into putting on my second one and I realize I have them upside down! That is, the palm is on the back of my hand. Too bad, so sad. I'm not taking the time to change it now. So lesson #1:  MAKE SURE YOUR GLOVES ARE RIGHT SIDE OUT!

Struggling with the gloves

I hopped on the bike and took off. I was glad for wearing long sleeves because it was cloudy along the coast.  I wasn't a half mile into the bike ride when my Garmin beeped at me, signaling a lap. Wait a minute....its not supposed to do that when you bike. Did I hit "stop" instead of "lap" at transition? What does Garmin think I'm doing? Still running?  I started pushing stop/pause/lap to try and get Garmin into sync with what I was doing. Not a good idea while riding a bike. First of all, its dangerous. Second of all, it slows you down. After awhile, I just figured, to heck with it.  Which leads me to lesson #2: THERE IS A DIFFERENCE BETWEEN "LAP" AND "STOP." MAKE SURE YOU HIT THE RIGHT BUTTON IN AND OUT OF TRANSITION!

I was a little concerned that I would get lost on the bike course, so I made sure to keep up with the couple in front of me, the woman was wearing fluorescent yellow.  Not much to report on the bike course, other than marveling at how fast people can go on bikes. I was pushing it for me, and people still passed me. Of course, by now, I felt like I was probably very near the rear, but I didn't take the time to look back-I just kept pedaling.  One of the participants had some kind of accident-I'm not sure what happened, but one of those fit looking dudes I saw in the beginning ended up being tended to by paramedics by the side of the road. I hope it wasn't serious.  As I was coming up near the end of the ride, I saw that guys were already out on the second run lap. Not too surprising, but still. I didn't want to be last!

I came back into the transition area after the ride, and saw that many of those fit dudes were already done and were snacking on apples and bananas!  I got back into my running shoes as fast as I could, put my ball cap back on and took off. As I was taking off, I heard someone yell..."The first female finisher is in!"  Oh man. I don't want to be last, I don't want to be last!  At that point, I didn't see anyone behind me. Oh well. Worrying about it isn't going to do me any good. Just keep going.

Well.  I have never run immediately after biking. It is a sensation that is hard to describe. I wouldn't say your legs feel like jelly. More like wooden. I felt like I was clumping down the road at an incredibly awkward gait and slow pace. I hoped that after a half mile or so it would go away. It did kind of, but was exchanged with an overall "my legs are really tired" feeling.  I know that feeling, I can work with that.  I was happy to be able to pass a couple of men on the run, one of whom I know was just taking it easy. He was one of those fit guys from the early morning.  (He actually is one of the ones doing a "real" triathlon tomorrow in Coronado.) But who cares? If I could stay in front of them, I wouldn't be last!  As it turned out, I was going about a 9 minute mile. For me, that's pretty good. Not as fast as my first run, but still decent for me.

As I came in, there was a TCSD volunteer who asked me for my chip number. Chip? Uh, yeah. I left it in my car because I couldn't activate it. Turns out, he was recording times and I could have been "official" in the race. Lesson 3: WEAR YOUR CHIP NO MATTER WHAT!   By that time, I figured...whatever. My times are all screwed up anyway. This is all about learning lessons so I don't make the same mistakes in a "real" race.  My friend Matt and his family were there to cheer me on over the finish line, which was nice. His son hi-fived me as I crossed the finish. And it was done!  We made our way over to the snack table to get some water and stretch. After a few minutes, I realized I hadn't stopped the Garmin. Oh man! Lesson 4: STOP YOUR GARMIN AFTER YOU CROSS THE FINISH LINE!

I am happy to say, I saw at least 3 people (all men) come in after me, so at least I wasn't last.  Boy, I have a lot to learn. And a lot of room for improvement in my fitness. It was a pretty fun event, and I'm glad I did it.  There is a club practice triathlon in April that I would like to sign up for.  Lord knows what kind of goofy mistakes I will make trying to transition from swim to bike!  Not to mention that I'm not that experienced in the open water swimming department.

I got home, and Garmin uploaded my data to the website. As I looked at it, it thought I did an hour and 32 minute run that went 16.88 miles. What?  Just a run? Which brings me to the final lesson 5: MAKE SURE YOU SET GARMIN FOR MULTI-SPORT! I had programmed it for run-bike-run, but never actually switched from just run to the multi-sport. At least I know my total time, although it did take me a few minutes to stop the watch after coming in.  So my time was probably around 90 minutes.

In any event, I can sport the sticker on my car now without feeling like a total liar. Maybe just a little since I haven't actually done a "tri" athalon. But I am no longer a complete poser!  In the coming months I'll make it all the way. I may be near the back of the pack, but I will cross the finish line, Lord willing!