Some Final Thoughts before Heading Out to Canada

So it’s almost here, 6 days until Ironman Canada and it’s hard to believe that this goal I have been working towards for over 8 months has finally arrived.

You can probably tell based on the lack of posting here on my blog that I have busy. In addition to training I’ve also had some projects that I have been participating in at work have also gone into production. And there has been all the organization and finalizing details for my trip to Canada. While the workout time has been cut way back in the past few weeks (aka the taper), the day to day stresses have not been. And then there’s sleep – I’ve been getting lots and lots of sleep. Between 8-10 hours a night and often a nap at lunch time or at 5pm.

I expected to feel fantastic during the taper as I usually do when I am training for a half ironman. My typical taper pattern over the last couple of years was to feel rested and energetic. Not this time, I generally felt lethargic and irritable. The irritability could definitely have a lot to do with the stress going on at work and personally but the lethargy was definitely bringing me down. I also have just a lot of little ouchies going on, my typical shin splints but also a sore left knee, tight calves, sore right shoulder, etc. Coach Mary reassured me that this was normal and that I was only experiencing what a lot of other people do during a taper. Lesson learned: ironman tapering doesn’t necessarily compare to previous experience and don’t expect it to.

Do I feel ready? Absolutely! I have put in the training and I feel confident of my ability to swim 2.4 miles, bike 112 miles, and run 26.2. This training has been KILLER and I have had some training sessions that tested me to my limits but I know I can do all of this even in tough heat so I feel ready to go in that regard.

During my last long-ish taper ride a couple of weekends ago I experienced one of my most dramatic low blood sugar episodes of the season. It was my own fault in a way, I had forgotten to turn down the basal rate on my pump before leaving the park lot but I still ended up getting an uncharacteristic drastic drop very quickly. I think a lot of people have heard stories about diabetics who get very angry when they have low blood sugar, to the point where they get outright violent. Well, I wasn’t violent but I was very ANGRY about the situation. My trusty training partner and friend, Sarah, recognized that I had a low blood sugar and tried to suggest that it might be time for a break but I wasn’t having it. Sarah had to pretty much scold me off the bike because she began to get concerned for my safety when I was weaving on the white line when it was a little wet outside. It took about 10 minutes for me to recover and Sarah had to endure about 5 minutes of my negative attitude and thoughts. Here’s a picture we took to commemorate the experience, keep in mind that this is after I recovered so I actually do have a little smirk on my face.

Don't let this be your low blood sugar face.

And finally, my thoughts about what is coming up in 6 days…

I have thought a lot about what might happen if something goes wrong race day. I have a plan for almost every scenario but I have also been giving some thought to the biggest question of all – what happens if I don’t finish? I feel like this is a little taboo to talk about. Like it’s a thought that I shouldn’t even entertain but I will none the less.

So there is a lot that could go wrong for me on race day. I’ve got plan A, B, C, and D for all the potential diabetes issues but a ‘perfect storm’ of issues could happen that I can’t recover from. I’ve occasionally had some stomach cramping during the past few months that has been very painful and very intense, if that issue rears its ugly head on race day it may be too much to bear.

But the biggest challenge I see now is my fear of descents. I think it must be really hard for people who are not familiar with anxiety and fear to understand how a person can be so debilitated by fear but it is worse for me to experience that fear than it is for me to experience pain. My plan is to just take the course as it comes and to pull over to the side of the road if the fear gets so great that my body and bike begin shaking.

On the bright side though, I really think once I get on the run that the hardest MENTAL part of the race for me will be over. That is not to say that I will not suffer on the run since I most definitely will but there won’t be any fear and that will be a tremendous mental boost for me.

But what if I don’t finish? I have given it some thought and I am ultimately OK with that and here’s why.

 In the list of words that describe who I am - ironman won’t be in the top 5 and possibly not in the top 10. Some of those words are:

Partner

Daughter

Sister

Friend

Care Giver

Fighter

Survivor

I have completed this training and had to bear through a lot of difficulty. No one gets to the end of ironman training, if they’re training sincerely, without perseverance and difficulty. But they were already found qualities and they aren’t qualities that will go away if I don’t finish my race in 17 hours on Sunday, August 26^th. So if I don’t make it – that’s really OK. I’ve already completed – an won – this not so literal race.

Race day updates will be provided in real time on Facebook via the Susan.K Ironman Canada Tracker page. It will be pretty late for those of you on ET since I will be on the West Coast so feel free to wake up on Monday morning to the news of how it went. I will be posting some pictures and maybe some brief thoughts pre-race on the Facebook page but this will likely be the last blog post until the full race report.

Thank you, thank  you, thank you for all the positive thoughts, energy, and prayers. I will take all I can get.

Much Love,

Susan

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: http://www.amensupport.org/susan-kent-men-1-story/

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. :)


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Edited on 7/27 to add:

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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. :)

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: http://www.caringbridge.org/visit/stevekent

Debbie, Susan, and Steve - Sept. 2008

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.