Remembering Joel

I just posted an entry on the 18th about a friend who had run out of options in his cancer care. When I woke up this morning I did my usual look through Facebook and saw that his brother had posted a couple of pictures of Joel in the very early morning hours. I immediately knew what that meant without having to look any further - Joel had passed.

I met Joel many, many years ago when he was just a little guy. His brother Jason had befriended me in our first year at our local junior college. Jason was a life saver at that point because most of my friends had left for out of town schools and I was floundering because I knew so few people. Jason brought me into his group of friends and made my two year of junior college a lot of fun. I wouldn't be nearly the geek I am today without the influence of that sci fi and comic book loving gang. Jason helped me get a summer job as a youth director at his church and there I met Joel and a lot of other great kids. Joel was cute as a button with a funny voice and a great sense of humor (it runs in the family). I only spent a summer working there and then went off to finish my last two years of college in Alabama.

Fast forward many years to the time when my sister was sick and I was going through my own treatment. Joel reached out to me via Facebook to let me know he was available to talk. I had stayed in touch with Jason a bit throughout the years and knew Joel had thyroid cancer at 15 but I hadn't realized the extent of the cancer at that time or that he had to have continual follow ups since his teen years. Turned out that Joel knew the ins and outs of endocrine cancer much better than I did. This is Joel's story from the MD Anderson website.

We exchanged a lot of facebook messages and a couple of long phone calls. There is something about talking to someone else that has had cancer that strips down your walls in talking about the disease. I could be honest with Joel about how weary I was - for me and my family. He listened to me talk about the grief of losing my sister and my frustration with my brother's diagnosis. I was mostly struck by Joel's unwavering optimism and faith despite the difficult therapies and treatment he was enduring in never ending succession. I told him that I honestly couldn't seeing myself enduring that. There were some other topics as well - but it's a little too real to talk about - particularly today.

In time, I got dramatically better and rebounded stronger in some ways than I was before. Joel and I actually switched up treatments centers and teams right around the same time. He moved back to Florida and went to Mayo and I started going to MD Anderson in Houston. During my checkup last year I got excellent news - all my hormone levels were stable, all scans were crystal clear - I was now clear to go to annual check ups. Joel was one of the first to congratulate me. I was looking over our facebook messages this afternoon and want you to see what he said to me:

Susan, Glad things went well at MDA. You're setting the bar high and an inspiration to me. I just got back from Mayo today, they have a couple drugs in mind... Just so happy for you. Pop is staying with me right now and we've been praying for you and your brother. God is working on you. I'm being wordy at this point but I'm just so joyfully tearful for you. Love you so much, Susan.

I can't be sure exactly what kind of news Joel had gotten at Mayo that day but it surely wasn't as positive as mine was. Tell me what kind of caring, great person sees that a friend got great news when maybe they didn't and gets in touch to let you know how happy they are for you? I wish that was the kind of person I was but I am not sure it is. 

Now, of course, comes the regret. Why didn't I reach out to Joel more often in the past year? I heard from him in September that he was going to be in Atlanta in October and we were going to meet up but I never heard back. Maybe he had a decline and couldn't make it? What was so important in my life in October that I didn't make time to get in touch? Logically I know this is a normal part of loss but that doesn't make it easier.

When I saw the post from Joel on the 18th I knew that he would be gone very soon. He was so relentlessly optimistic and him saying that it looked like the end of the road was a sign to me that it surely was. I sent him a message via facebook but can't bring myself to tell you all the content but do want to share one thing:

I will be keeping you in my thoughts as I train this year for Ironman. I know a lot of people think I'm crazy for doing this training - but you know what I know - this is EASY compared to the journey we've been on and you've been on it longer than me. This training gives me a sense of peace and joy. Your spirit also give me a sense of peace and joy Joel.

Even if he didn't get to read or hear this - I know that Joel knows how I feel now - and I very much doubt he would want me to dwell in regret. So on the way to my ride this morning I thought about Joel and put on the most painfully happy song I could think of, Jonsi's Go Do. (I warn you - Jonsi is a character and you may not love the video. Just listen to the music and lyrics.) One of the odd things about me is that a sad song doesn't generally make me cry, but a joyful happy song? I cry buckets. So I cried and sung along:

You wish surprise, will never stop wonders
You wish sunrise, will never fall under
We should always know that we can do everything

Blog Challenge

Of course I'm new to the world of blogging, but I'm starting to meet some new blog friends via Team Touch Chik. This challenge come courtesy of Too Tall Fritz who has a great blog with a sense of humor. 


Here are my questions:


1. Favorite race/event and why?
2009 Nike Women's Marathon with Team in Training. This marathon was 10 months after my pancreatectomy. When I started training for this race I had never run more than 9 miles but my coach and good friend Jo, convinced me that not only could I run - but I could run a full marathon. During that season I learned to cope with being a diabetic, learned to love running, and worked through the grief of the loss of my sister. I also got to run the last half of the race with my great friend Sarah who got me through all the tough miles. I didn't turn in a good finish time by any means but it meant so much to finish that marathon in memory of my sister. 


2. Were you a princess or a tomboy?
Am I old if I say that princess wasn't really a thing when I was a kid? :) Regardless, I wasn't really a girly girl. I did ballet and gymnastics but enjoyed BMX racing most of all.


3. Who or what inspires you and why?
The memory of my sister and father. My brother who is fighting his own cancer battle. 


Anyone who make the *choice* to better their health or contribute to cancer advocacy/research. I didn't have a choice with cancer - so someone who chooses to commit to advocacy and research is inspiring. I've been privileged to participate in a lot of Team in Training events where I have watched participants bloom into athletes in front of my eyes. Seeing their pride in both finishing an event and having made a contribution is the best inspiration ever.


4. Do you have more online friends or real life friends?
Since I'm pretty new to blogging and virtual teams it's definitely real life.


5. 20 year class reunion... Are you going, legitimately busy, or you wouldn't be caught dead stepping in the door?
Mine was 2009. I went, danced, and loved it. You can see the photos on my FB page.


6. Do you prefer flowers or candy from you S.O. or should they save the $?
Well I prefer jewelry but I have gotten flowers on occasion. My S.O. is very practical so it's a real treat.


7. If you were rich rich and famous and had the guts to name your kid something outlandish, what would that be? First and Middle name, please. 
Alice Turtle (or Rabbit) - I'm a huge Alice in Wonderland fan. I would probably never do this to a real child.


8. You're in a marathon, in first place on world record pace... You have to "go". Do you stop for a port-a-pot, possibly lose the race and a world record or do you go in the street for the world to see?
My predominant sport is triathlon where it is a point of pride to pee as many times as possible on the swim and a mark of your experience to say you have peed on the bike. I have even been peed on while being passed on the bike.


Having said that, I am happy to pee in the water but not once I am out because I am not a podium threat. If I were even close to an age group podium spot though, I would definitely let the flood gates go. There is no end of bodily fluids I would be willing to make public for a world record spot.


9. Why do you run?
Easy, because I can! :) Running, cycling, and even swimming are my therapy and a way of celebrating how far I've come through cancer and loss. I don't know what I would do without these outlets. 


10. Favorite type of run?
Long (10 or more) group runs. Celebrating the finish of a long run with friends is almost as good as race day.


11. Most adventurous "out of character" thing you've ever done?
Mmmm - that's a hard one. I don't consider myself very adventurous. I guess people might think training for an ironman is adventurous but I didn't even get into that easily - it was a very considered and cautious approach over two years to ensure that I was fit and healthy enough to attempt it. So anything I would come up with would be exceptionally lame. 


If I were more of a blogger I would be tagging other bloggers to follow up but since I am just starting out it may stop with me here. I look forward to building more of a blog network.

An almost perfect 24 hours in between the lines

You've seen a picture of my Continuous Glucose Monitor (CGM) on the blog before but here's what an almost perfect 24 hours of control looks like!:

This means my blood sugar was between 80 - 180 for a 24 hour period. That's pretty close to perfection for me and is really difficult to do. There is very rarely a day that I get this kind of 24 hour view on my monitor - maybe once every few months if I'm lucky. The peaks represent meals and that one dip at the end was my run yesterday evening. 


Best of all - I got a night of sleep that was not interrupted by any alarms or buzzing. Booyah!


Of course this streak was busted by a couple of overnight lows and a high after breakfast this morning. Perfection is short lived.

Blogging while training

The weather prevented an outdoor ride today but still have to get 150 mins. in. So here I spin.

It Doesn't Get Easier

I woke up this morning and started perusing Facebook on my mobile phone. The first status update I saw was from a friend that has been fighting thyroid cancer for many years. It appears that he has been told that there isn't anything more that can be done. 


It immediately took me back to hearing the same news for my sister. You know what it means, but it's so harsh and hard to hear. At one point when I was talking to my sister during this time and I started to cry. She looked at me in a concerned and worried way and said 'I thought we were used to this?'. But the truth is, there is never a point at which you get used to this no matter how many times you have been through it with family and friends. 


So I am thinking of my friend today and for many more days to come. He has been a source of strength as I have gone through my own journey. He has fought long and hard, in a way that I don't think I have the strength for. Believe me, training and doing an ironman is *nothing* compared to the constant grind of surgeries, scans, shots, chemo, radiation, and on and on that someone who is fighting cancer for years goes through. 


Much love and peace to you always JD.

About Those Missing Organs

The title of my blog refers to not one missing organ but a few. This post is about my pancreatectomy and those other missing organs.

I should tell readers that one thing I committed myself to when doing this blog is talking about some topics with honesty. If you’re finding your way here due to a search on MEN 1, pancreatectomy, etc., I want to give the real scoop on what it’s been like for me. And really, it’s been quite good all things considered. I have had a fantastic recovery that has made me able to continue with my active lifestyle.  Not everyone that has this surgery is that lucky, there is a lot of room for complications and the chances are high that one will crop up. So while I’ve had a great recovery and it’s been much easier than most – it’s not always as easy as it may seem to the casual observer.

Technically, what I had was a laprascopic pancreaticduodenectomy, but that’s too much of a mouthful to say. Checking out during this procedure were my pancreas, duodenum, gall bladder, bile duct, and spleen. The last three were mostly obliged to say goodbye due to the removal of the first two. Dr. Asbun at Mayo Clinic in Florida did the procedure along with his surgical team and completed the surgery in about 9 hours. Pretty good considering we were told it could be 14 hours. Since the surgery was done laprascopically I only have a few scars. The longest one which is only a couple of inches runs into my belly button. (I assume that’s the incision where these organs came out but perhaps you are like me, and prefer not to think about this level of detail.) There are a few other small incisions around my abdomen adding up to 5 small cuts where the cameras and instruments were positioned to make the cancer go bye bye. If you looked at my belly today you wouldn’t have any idea that I had such a big surgery. I’ve even received some puzzled looks from doctors when I tell them my medical history and they then do an exam. “Oh, it was laprascopic”, I say. “Yeah, not many surgeons do it, he was awesome”. I had great experiences with almost all my doctors at Mayo and Dr. Asbun was one of the stand outs. Funny, caring, and personable in addition to being experienced with this surgery.

I have blogged several times about what the diabetes after effects of the surgery have been like and how I manage them but the piece I don’t often talk about and that you can’t visibly see is what it’s like to live without the exocrine function of your pancreas. In addition to producing insulin your pancreas also produces several digestive enzymes. These enzymes are primarily responsible for digesting fats and proteins. Since I no longer have a pancreas I take a supplement to replace these enzymes, in my case it’s Creon 24. I tried a generic for a while after my surgery but this was definitely a case of generics not working as well as a brand name drug. I take 2-3 Creon with each meal depending on how much I’m eating and how fatty the meal is. God forbid I forget to take my Creon with a meal, particularly if it’s a fatty one. It’s extremely uncomfortable for me for up to 48 hours and unpleasant for everyone in my general vicinity. I think that’s as detailed as I will get. I think you catch my drift. (Get it? Hardy har har!)

In the short term I lost a LOT of weight. I had purposely put on some weight prior to surgery knowing that I would drop a lot. I think the grand total ended up being close to 40 pounds. For about a year there was no amount I could eat that would put that weight back, but gradually I did start putting weight back on and am now capable of gaining weight just like the good ol’ days. The experience did make me appreciate weight gain as a good thing rather than the negative association I had always had. 

Long term I am on a proton pump inhibitor (Omeprazole) and a lot of supplements. I have deficiencies in a lot of electrolyte and vitamin deficiencies due to poor absorption. Primarily magnesium, calcium, iron, vitamin A, vitamin E, and vitamin D. Check me at meal time and you’ll find me swallowing a lot of pills trying to make up for these deficiencies. It took a year or so but those deficiencies seem to be pretty much worked out at this point and there’s always a blood test around the corner to make sure I’m on track.

1 day of pills and supplements

One issue that continues to bug is some occasional stomach pain. From time to time I get a ‘burning’ sensation when I eat that can last for a few days with each meal. It’s not a killer pain but there is enough discomfort to make me wince my way through it. More of a pain, both literally and figuratively is a very occasional ‘attack’ that seems to be textbook bile duct/gall bladder blockage. It’s only happened a handful of times in the past couple of years but is enough to get me doubled over on the floor. Fortunately Ellen has got it timed to not lasting for more than 8 minutes and she counts down the time for me until it’s over. As best as anyone can tell, there may be a little fragment of a bile duct left and bile may be trying to make its way out. Too bad bile – you’re stuck there and it would seem I’m likely stuck with the pain. Crossing my fingers and knocking on wood that this remains a very occasional experience.

All in all, pretty darn good. Better than the alternative!

All this sugar...

...and still got a low 35 miles in to my Saturday ride. What's it going to take? Not pictured - 1.5 bottles of Ironman Perform lemon lime which also has a fair amount of sugar.

Gorgeous Winter Ride

Had a nice training ride today. Showed up to find a big group of folks that wanted to show up for such a gorgeous day in January. Some were getting in their first ride since Ironman Arizona! Also got to hang with Sasha, one of my favorite training partners from the past couple of tri seasons. 


Easy 40 miles and despite the wet roads that kept reminding us that it must have just rained before we got there, we never got rained on. Fantastic because I really hate to ride in the rain. 


Blood sugar was mostly in check though I did go low within the last 5 miles of the ride. I have to remind myself to just keep on sucking in the sugar even if it's an easy ride and I'm almost done. Had a couple of slight mechanical issues with my saddle and handlebars (yikes!) coming loose. Fortunately had Sasha and Sarah around to stick with me while I worked those issues out. Looks as if my last re-fit didn't quite torque those bolts down enough. Oops.


I wish all training rides were this easy and fun! I know this weather won't hold up so I better relish it while it's here.

My Diabetes Arsenal

As I touched on in a previous post, the most difficult part of healing after my pancreatectomy was learning how to manage my diabetes. There is so much information out there pertaining to Type 2 Diabetes and constantly hearing those messages got me confused about how I would or wouldn't be restricted as a  Type 1 Diabetic. Technically, I am a  Pancreatogenic Diabetic since I have no pancreas at all, but trying to explain that to people is even more difficult than explaining the differences between Type 1 and Type 2.

I'm happy to say there are some tools and technology that make being an insulin dependent diabetic a lot easier to cope with - my insulin pump and my continuous glucose monitor.

BTW - sorry about the orientation of the pics below. The blogging software isn't very friendly for orienting and editing photos.

I use an Omnipod Insulin Pump. This pump is the only one on the US market that has no tubing which means I can swim and shower without having to remove it. 

Clockwise from top: Omnipod Pump, Blood Glucose
Test Strips, and Omnipod Controller.

Every 3 days I take the old pod off and 'prime' a new pump with insulin. I then stick it on a good, fatty place - typically my butt - activate the pump and *pop* a cannula gets inserted in my skin and I start getting my insulin. Overall I am really happy with this system though I would appreciate a smaller pod. I'm surprised that more people don't ask what the lump on my butt is. Surprised, but thankful I suppose that I don't have to explain.

I was very reluctant to begin using a Continuous Glucose Monitor (CGM) - I already felt a bit like the bionic woman with one piece of technology attached to my butt - but my endocrinologist kept pushing and I eventually gave in after doing a trial and seeing just how powerful it is to have a constant view of how my blood glucose is trending. I use a Dexcom 7 CGM:

CGM applicator and CGM sensor.

Every 2 to 4 weeks I change my sensor out with the applicator. Wish I could say the application process is as easy as the pump - it's not - this one really hurts when it goes in because the needle in the applicator is bigger and it needs to insert a wire. Typically I put the CGM on my lower tummy where I've got an inch to pinch. A CGM monitors your blood glucose based on interstitial fluid rather than blood. This is not as accurate as blood and your actually blood glucose (BG) can vary as much as by 30 points but generally mine is within 10-15 points of my actual BG. I love being able to follow my BG trends visually and I'm pretty obsessed with checking it throughout the day - even when racing. It's a little less reliable when training or racing than a normal day so if I see it saying anything less than 140 I like to start shoving in some sugar.

You'll notice that in the picture above that my BG was 203 when I took the picture. *Sigh* That's what happens when you eat your breakfast starting with a BG of 80 and don't want to bolus and make your BG even lower - so I forgot to bolus. That's been happening a lot lately - gotta get that figured out.

I carry both my Omnipod and Dexcom controller with me when training or racing over long distances. If I could tell these companies anything it would be to make these things smaller. I had to buy new purses after my surgery just to accommodate all this stuff! I particularly look a little silly running with all this gear. In a future post I'll show you how I accomplish that.

Researchers are getting closer to actually integrating pumps and CGMs together so that they 'talk' to each other and would effectively act as an artificial pancreas. I'm very excited about that possibility and am crossing my fingers it will be soon though I really shouldn't get my hopes up since the pace of FDA approvals is glacier like. I suppose that's fair as a malfunctioning insulin pump will - there's no way to be delicate about this - kill you. 

I'll spare you the PG13 pics of what these devices look like once they're actually attached. :)

Starting IMCA Training

So here it is my first week of no excuses, I am now seriously training for an Ironman. I wanted to record the plan in order to have a baseline on what I started with compared to what I will be 'ending' with before I start tapering in late July/early August. 


For readers who are unfamiliar with tapering, this is the period of time several weeks before an event in which the athlete drastically cuts the volume of their training in order to allow some rest and recovery time. I will also get a few 'rest' weeks during the course of the next 8 months so that my body and mind have time to recover.


Monday
45 min. Strength Workout
45 min./2000 yd. Swim - focusing on form (i.e., Masters)


Tuesday
60 min. Run or Cross Train


Wednesday
45 min./2000 yd. Swim - faster


Thursday
45 min. Strength Workout
90 min. Cycling (i.e., Indoor Training Class)


Friday
Rest


Saturday
2hr. 30 min./40 miles Cycling - long, slow ride w/ some hill intervals


Sunday
40 - 60 min. Run - long, slow run w/ some intervals


Thoughts:
This I can do! I'm so lucky to have Mary Doyle coaching me this season. Mary was my very first triathlon coach back in 2008 when I did Irongirl Atlanta. I met with Mary a few weeks ago to talk about my training goals and I told her it was important to me to have one rest day a week - TGIF! I am very fortunate to have had very little injury in the past but my mind tends to break down before my body does so I very much need a rest day each week just to get my head right. Mary is working with me even though it means I won't be getting in 3 swims a week. Honestly - it will be a feat to get me swimming 2 times a week consistently. I don't mind being in the pool but really dislike the fanfare of getting ready to go to the pool, jumping in when it's cold, and getting out when it's even colder. 


I also have what I assume is a temporary mental block with long rides. I am more than happy to jump on my trainer any day of the week but getting out in the cold to do a long ride is not something I'm enjoying right at the moment. It likely has something to do with the cold and possibly doing El Tour de Tucson in November which had me on the bike for longer distances than I'm used to later in the season. I hope some indoor work doing some hard intervals will get me excited again. 


I may have to move Thursday's strength workout to Wednesday. I will be doing an indoor cycling class on Thursdays through March that truly kick my butt so strength workouts might be better paired with swimming. 


Here we go!