Thursday, July 26, 2012

My Longest and Toughest Training Week

Just a quick post this week - this is it folks, my longest and toughest training week. Here it is for posterity:

Monday: Strength Training and 1:15 Masters Swim
Tuesday: 93 min. Bike Intervals
Wednesday: Strength Training and 4000 yd. Swim
Thursday: 95 min. Interval Run
Friday: Open Water Swim
Saturday: 110 Mile Ride
Sunday: 2hr. 45 min. Run

After this I start tapering so the workouts will get much shorter.

Throw in a few doctor's appointments and it's a crazy week. I'm headed to the endocrinologist this afternoon and crossing my fingers that my A1C is still on track though my early reports show that I may have not done as well managing my diabetes over the last 3 months. We'll see.

My MEN 1 story has been posted on the American Multiple Endocrine Neoplasia  Support website at:

Linda Hageman who runs the non profit for AMEN Support has been a good friend to a lot of us in the United States who have MEN. She is working hard at increasing the awareness and support for those of us with Multiple Endocrine Neoplasia and I was honored to share my story.

More to come after this hell week is over. :)

Edited on 7/27 to add:

So the endo appointment went about the way I thought it would - not as well as I would have hoped. I've gone a little off track the past few months and my A1C was higher than we (me and my endo Dr. Gilligan) would like. We made some adjustments to my insulin basal (all day insulin drip) rates but I will have to start doing some tracking to determine whether this is a basal or bolus (insulin I take when I eat) issue. 

Dr. Gilligan gave me an assignment to help us track down the issue. So when my blood glucose is normal before a meal I will eat/bolus as usual and check my blood 2 hours after my meal. If my BG is within 30 points of normal than my bolus factor is correct. If not, then we will have to adjust the bolus factor. 

I also talked to Dr. Gilligan about my swim concerns. I am worried about getting low blood sugar during ironman because I will be in the water between  80 and 90 minutes. I told her that I observed a lot of other diabetic athletes who have tubed pumps which forces them to actually take the pump off before they get in the water. That way they are pretty much assured they won't go low because they aren't getting their basal drip. My pump stays on 24/7 and I don't typically turn it off or even down too low out of fear of going high. After explaining this Dr. Gilligan's eyes got a little wide and she told me to turn my basal rate down by 50% 2 hours before I get in the water. And then this warning... 'If you ' go low <and therefore drown being the implication> in the water I will raise you from the dead and kill you myself'.

Bwa ha ha ha! I loved it. My endo cares. :)

Wednesday, July 18, 2012

Sigh - Here we go again

This Sucks.

There is no way to candy coat this, I’ve been dealing with some bad news on the family front and have been reluctant to talk about it. As if somehow not talking about it will make it go away or make it easier to deal with.

My brother is sick.

Actual Facebook exchange between Steve and I re: this photo:  
Susan: Christmas 1977 - Poor Stephen Kent - already putting up with my dramatics.
 — with Stephen Kent in Mary Esther, FL.
Stephen: LOL, those tinker toys pissed me off, I remember asking mom to rid me of the foreign objects in my sisters head…. I remember you saying that you were an alien…. don’t get me started susan.
Susan: Steve, I know, it’s hard to have such a creative and imaginative sibling. Hit it Steve! Ha! J
Stephen: shut up susan… LOL

I mentioned in several posts here that in addition to me, both of my siblings inherited MEN1.  This post is looking back on what it was (is) like for all of us to be diagnosed and treated.

It is almost exactly four years ago that my sister called me to say that she had gone in for an MRI and asked if I remembered Dad’s symptoms. The Olympics were happening as Debbie began her journey of treatments. We sat on her couch and watched swimming and gymnastics together. Some of my earliest memories with Debbie were watching Nadia get perfect 10s in the 1976 games and it was bittersweet to watch her last Olympics with her in the summer of 2008.

So here it is the summer of 2012 and my brother is on the similar journey of treatment. Steve has been impacted by several complications of MEN1, but most seriously by thymic carcinoid. It is a rare, but abnormally aggressive form of neuroendocrine cancer. Steve had surgery in 2009 to remove his parathyroids, thymus, and a tumor that was close to his heart. It left a very impressive scar on his chest. In 2010 he had a recurrence that he managed to fight off with some intense radiation. His oncologist told him then that this radiation treatment was a onetime deal, the next options weren’t promising.

And life went on, amazingly without recurrence for quite a few years. Steve would have PET scans and they would come back clear. He was even beginning to think about the possibility of a pancreatectomy, because he has the same malignant pancreatic tumors that my sister and I had but his medical team would not operate as long as something far more aggressive and malignant was at his doorstep. But he had been clear for so long that it was starting to look like maybe it was worth considering the pancreas surgery.

No matter how many times I go down this path with my family and friends it is always the same; there is what you dare to hope and what you logically know when it comes to cancer. I get through a lot of this by being a logical and methodical person. I knew with my logical mind that it was all but certain that the carcinoid would come back but my heart held out quiet hope for a different, miraculous outcome.

Many weeks ago my brother called and told me that he had been having tremendous back pain that had sent him to the ER a couple of times. They finally ordered an MRI which showed suspicious ‘growths’ on his spine and neck. (BTW – I would like to compile a list of what words have been used on radiology reports in an attempt to not say tumor. Hot spots, suspicious areas, etc., etc. Yeah, yeah, we get ya.) Steve’s oncologist ordered a PET scan which confirmed what was on the MRI, and a biopsy of one ‘spot’ made it official; stage IV metastatic spread of his neuroendocrine cancer to his spine and neck.

Like I said, this has been going on for weeks. This is the part of cancer that many people don’t see firsthand. The initial discovery of something suspicious, the confirmation of something suspicious, the biopsy, the treatment plan, the next treatment plan. And all the WAITING in between. Going from I *might* have cancer to it’s *likely* I have cancer to I *do* have cancer. The waiting and testing is so slow and tedious that by the time you get to a definite place you’re like, LA, LA, LA I have cancer. As pictured below:

October 28, 2008

Yep, that’s the day I got diagnosed and that’s exactly how I felt. For God’s sake let’s get it on already.

But you don’t get it on already because then there’s MORE tests to rule out something like spread to your bones. My brothers metastatic spread to his bones is what I had to have ruled out before having my surgery. So I had radioactive injections a couple times, laid on a metal table, and had a scanner pass over me at a mind numbingly slow place checking my skeleton from head to toe for any spread. Any little blip had to be analyzed and you find out weird things about yourself like having a bone island in your hip and a bone scar on your scapula. (“Are you sure you didn’t do anything to your shoulder?” Uh, not that I’m aware of and who cares if it’s not cancer.) All the time just praying and hoping that I’m OK and mourning that my sister is not. Not having the time or energy to be too upset for myself because my sister is going through something far worse and more painful and just wishing and praying that will somehow go away. And then the prayers turn from miracles to just wanting a good option and then, finally to prayers for peace and rest.

Steve has already been through treatment option #1. MIBG isotopes  - didn’t work. Now we’re on to treatment option #2 – Tasigna. It’s not a great option because Tasigna is primarily a drug for Chronic Myeloid Leukemia but it does work occasionally on carcinoid and makes me feel good about being a supporter and fundraiser for the Leukemia and Lymphoma Society all these years. If that doesn’t work we’re likely on to chemo which doesn’t have a great effective rate either.

I suppose I could get very angry about the lack of effective treatments for endocrine and carcinoid cancers. I wouldn’t wish chemo or radiation on anyone but do sometimes regret that there had been a second line treatment for me after having my pancreas surgery to just quash the threat of recurrence. But the fact is that these treatments wouldn’t have been productive and who needs that level of suffering for nought? It’s hard to hold a grudge when the treatments others are receiving are so debilitating. There are no ribbons that symbolize our cancer but I don’t think I would wish for a bigger affected group. I find a lot in common with other survivors regardless of whether our treatments are the same and I’m sure they are envious of my getting to skip those treatments that have left them scarred physically and emotionally. If anything, I only wish for more and more research for ALL cancers as one will hopefully lead to an effective treatment for ‘my kind’.

So things with Steve are as good as they can be right now. His pain meds are working which is pretty amazing if you’re familiar with the intricacies of getting that precise mix going correctly. Here’s hoping there is a treatment we can find to stop or slow down the tumor growth and the pain meds keep on working at the level they’re at.

I'm keeping up a Caring Bridge site for Steve at:

Debbie, Susan, and Steve - Sept. 2008

Monday, July 16, 2012

Late Season Ironman Training... the numbers

Here are the completed distances and durations for the last 90 days of IM training:

Completed Distances

Completed Durations

It's hard to see the numbers on these diagrams, here's how they break down:

161.42 Hours Total
78.51 Hours Cycling
40.26 Hours Running
21.11 Hours Swimming
10:00 Hours Strength Training
10:57 Hours Racing (Triathlon)

1418.75 Miles Total
1117 Miles Cycling
199 Miles Running
26.25 Miles Swimming (46228 yards)
76.5 Miles Racing

A note about the swimming time and hours... my swim time and distance is actually a little higher than reflected here because I don't typically get my open water swim time accurately reflected in Training Peaks. But... if there is anywhere that I am going to slack it is on a Monday due to vacation/day off after a race/sickness/etc. So say goodbye to one of my two swim days. I also don't do a third swim during the week - so there you go.

For comparison sake here are the numbers from three months ago:

132.23 Hours Total
61.15 Hours Cycling
31.64 Hours Running
21.48 Hours Swimming
15.75 Hours Strength Training
2.21 Hours Racing (Running)

916.85 Miles Total
726 Miles Cycling
163 Miles Running
27.5 Miles Swimming (48800 yards)

So that's a 22% jump in time and a 54% jump in distance in the last 90 days. Yowza. No wonder I am T-I-R-E-D. 

Sunday, July 8, 2012

I'm sick - and actually that's a relief...

Sarah, Eric, Me, and Monika. The IM Canada crew.

Yesterday Coach Mary had a 100 mile ride and 40 minute transition run on the calendar. So I headed out to Silk Sheets to ride a couple of 50 mile loops with the IM Canada crew and Ellen along to SAG. The IM Louisville crew was out doing 3 33 mile loops so we knew we would run into them and their SAG support, Katie and Carlos.

I had explicit instructions from Mary to ride my pace, not waiting at any point, and to minimize my stops. I felt  great for quite a while. I know that route very well so I know where to maximize my effort and where to rest. I was easily on track to finish easily under 6 hours and maybe as quickly as 5:45. Around mile 47 I went through a super sunny and hilly portion that sapped my strength but I recovered pretty quickly and made it back to what I planned to be my last full SAG at mile 56. I fueled up and was off for the last loop. 

The first 10 miles of this loop started pretty well and then the heat began to wear on me again. By the time I made the turn to head back to the park around mile 70 I was suffering a little bit and got some extra water from Carlos to pour over my head and back. At mile 72 I had to get off the bike for a minute because I was feeling dizzy and overheated. A break in the shade and some water over my head made me feel like I could go on again but I wasn't sure how it was going to go. It was real ugly. I pedaled up hill when necessary but coasted every downhill I could. About 5 miles before the park I dropped my water bottle and had to stop on the side of the road. Two other cyclists rolled up and seemed concerned whether I was going to make it but I assured them I only had 5 miles to go to my SAG and that I would make it. 

All this time I had been pondering what I did wrong. Did I not eat enough (1500 calories?), not drink enough, (6 bottles of fluid), not enough sodium (3500 mg?), was it just the heat? I usually hold up in heat better than this. My chest was super tight - maybe asthma?

It was a tremendous relief to reach the park and see Ellen, Katie, and Monika. They got me settled in a chair with my inhaler and cooled down. I debated the cause with Katie and Monika and thought I might recover enough to finish the last 6 miles with Sarah and Eric. My inhaler wasn't helping the tightness in my chest. When Sarah and Eric showed up about 20 mins. later I was still dizzy when standing up and knew my day was over.

88 miles 
15.7 mph avg. - down from 16.8 avg. at mile 66

So this morning when my alarm went off at 6:45am and I felt body aches, tightness in my chest, and a sore throat it was actually a relief because I knew yesterday's bad ride was a combination of the heat and this cold setting in. I'm of course not happy about being sick but it's a much better feeling than being concerned that I'm possibly not ready for IM.

So the 3 hour run on the calendar wasn't possible today. I thought about doing a short run to try to shake out my legs but after lying in bed for a few more minutes and talking with Sarah I knew that wasn't a good idea. Next weekend is yet another opportunity to do a long ride and transition run. There aren't too many more weekends available to me so I'm hoping for some cooler weather.

Only 49 more days to go!

Long Run - July 1st

Another training pictorial, courtesy of Ellen. The map and GPS info is courtesy of our Garmin Tracker Unit (GTU 10). This allows Ellen to keep up with where I'm at when out training.

I went home to Fort Walton Beach, FL to visit my mom for her birthday. Coach Mary gave me a reprieve from Saturday's long ride - I sat on the trainer Friday night for two hours - but I still had to get in my long Sunday run.

So Saturday night I drove around my home time finding a lap that would get me about 9 miles before returning home for a bathroom break. 

Running in Florida pros:
Cooler than Georgia (at least on July 1st. Only 92 vs. 106)

Running in Florida cons:
No shade anywhere

Lets call it a draw:
Sidewalks - easy to route, hard on the body

 Sun still isn't fully up and feeling good. 

About an hour later and really starting to struggle.
Missing the shade in Georgia at this point.
Really suffering. Pain in my hip - hello gluteus medius -
that is making my limp and sun is wearing me out.
Post run - shaking out my hip as we pick up ice at
Liza Jackson park.
Time with Mom at Cinco Bayou's Frances park. And I'm
not wearing work out clothes. Happy 71 to my wonderful Mom! :)

Reward! Time at the beach. Ahhh.....