Day 42 - All rain and no sun makes motivation hard

As a born and bred Vancouverite it's never really been in my nature to complain about the rain.  From early October until the end of April, it rains here ... a lot.  One of my best friends who moved here in his teens always complains during these months, personally I think he's just jealous because he wasn't genetically engineered with gills like the rest of us who were born here (that and sometimes he can be a bit of a delicate flower).  In truth, typically in the past when it rained, I just didn't go outside.  Rain isn't nearly as bothersome when your lying on a comfy couch playing Tetris.  But, since I'm trying to do the right things and also get ready for my 10k coming up in a few weeks I can't let a little drizzle stop me.  Unfortunately, that little drizzle has actually been a consistent down pour since Sunday night.  I gotta say there's not much out there that is less motivating then looking outside and realizing that after about 7 seconds outside you'll be soaked and if this rain keeps up, you're pretty sure that you'll be able to do the backstroke instead of a walk or run.  Now in the past all I would have had to motivate me is sheer force of will and lets be honest, that only works for so long.  So I've tried to look at this rationally, a stretch for me I know.  The truth is, there will always be reasons that can sap my motivation.  In the summer it'll be too hot, in the winter, too cold.  One of the other cf bloggers I've been talking with gave a great perspective.  He was talking about how he was tired one day, hadn't done his exercise and really wasn't feeling to jazzed about the thought of doing it.  He then thought about it and realized despite the fact he was tired, what was the worst thing that was going to happen by doing his exercise, he'd become what ... more tired.  So it's wet ...  so what I'll dry, it's cold ... I'll warm up and if it's summer and it's too hot, I can just pretend I'm Homer and make a fridge tent.

The truth is, short of legitimate illness or injury, there really aren't many excuses that we should let keep us from doing our exercise.  Especially when you consider the ramifications of taking the easy way out.

Day 38 - Yes Todd, stretching is good.

Well it's been ok week, still plugging along on my goals.  The weight seems to finally be starting to plateau a bit, but that's to be expected at this point, I wasn't going to be able to keep up the 2 lb per week gains forever.  The main thing I'm starting to notice though is the dreaded muscle fatigue.  If I'm being honest I started noticing this a couple weeks ago but, as I've said before I'm a bit stubborn so I just kind of ignored it.  If you think about it I've been pushing myself to do 5 days a week of hard cardio for 30-40 minutes along with three 30 minute gym workouts.  It's not surprising my muscles are getting tired.  It's not so much the upper body, but my quads and calves just feel, well tired.  And oh yeah until a couple days ago I was neglecting a fairly important element of any fitness regiment ... stretching.  Now, before everyone out there starts rolling their eyes at me and saying "oh Todd" let me explain myself a little bit.
Historically I've never had much patience for stretching or the whole warm-up thing.  Growing up you always heard "If you don't stretch you'll pull a muscle.".  In truth I always kind of put it in the same category of things adults say like " If you keep making that face it'll freeze that way."  Playing hockey I always hated wasting energy before a game trying to take wicked shots on the goalie or stretching hard in one of the corners.  I figureed I'd rather save my energy for the game.  Instead I'd do a couple of laps, toss a few pucks towards the goal and then hang out at the bench waiting for the opening buzzer.  When I played baseball I never stretched because ... well, c'mon, it's baseball.  And while I stretched a lot when I did track and field and cross country that's because the coaches always led the stretches and EVERYBODY had to do it and it was only on practice days.  On event days though, when the coaches were busy with other things I never bothered.  And to this day my number of pulled muscles due to improper stretching still remains 0.  However, the thing I've noticed is that I'm 32, and while I'm not pulling any muscles, I don't recover with the same speed as I did when I was 14.  And I'm not just talking about the next morning after a night spent with Mr Alkie Hall.  What this means, is that I need to be a little bit kinder to myself.  What I've started doing is some basic stretching before and after exercise the last couple of days and it has already started to help in that regard.  I also found a great DVD we had from when we invested in the whole P90X fad.  There is a disc in the set that I've been using on off days that's just a stretching routine intended for off days.
So, other than my educational lesson in stretching there hasn't been a whole lot else of great excitement in the land of Todd.  However, with the Sun Run and my Hernia surgery less than three weeks away, I'm sure things will be getting more interesting soon.  Oh yeah and my daughters are both walking now ... but that shouldn't change things much ... should it?

Day 34 - Ahh PFT's how I've missed you (sort of)

It's hard to describe the gamut of emotions over the last day as I went in for my first clinic appointment since my general health overhaul.  In my first blog I talked about the different excuses/reasons I could use for any declines in my health.  The truth is, for the better part of the last three years there have been a variety of perfectly valid and justifiable reasons that I could use as my wife and I went through the highs and lows of IVF, pregnancy and new born infants.  Now this doesn't mean that for the last three years I shirked all responsibility for my health, when meeting with my doctors and health team I generally took ownership of any short falls or disappointing results.  However, in the back of my mind I would always know that if I applied myself the results could and would be better.  The problem with taking hold of your life and doing the right things means that you no longer have that little voice in the back of your mind saying "it's ok, if you actually decide to, you can step it up, you can be better".  No, that voice now has to say "Well, this is it, this is the best you can be" and you just have to hope that you're ok with the results.
That thought process is what actually led me to be nervous for the first time for as long as I can remember, maybe even ever,  when it came time to do my PFT's.  I knew they'd be better, the question was how much better.  I wasn't nervous about my weight since I've been able to track that at home (more about that later), but with PFT's you just don't know until you blow.  Was there only going to be a modest improvement of a few percent or would I see results of the sort that I haven't seen for the past five years.  The truth of the matter is, the results were somewhere in between.  On February 8th my FVC which measures my total lung capacity was sitting at approximately 95% from what the predicted measure should be based on my size and weight, my FEV1, which measures the amount of air I can expel in 1 second, was sitting at 58%.  These are the two key metrics the doctors use in monitoring lung function.  Today my FVC had gone up by 6% to 101% a good number and fairly consistent with my past as I've hovered between the 95-105% range for most of my adult life.  My FEV1 moved up by 9% to 67%.  I can't explain why, but if I'm being honest, my first reaction to those numbers was disappointment.  I know that's not being fair or realistic.  Those are dammed good improvements and I wasn't deluded enough to think that just by picking up jogging a couple times a week, going back to the gym and riding a stationary bike for a few weeks all my ills would be cured.  I just wanted more ... but that's not a bad thing.  If all it took was 6 weeks of work to undo years of malaise the lure of allowing yourself to fall into old habits wouldn't be as hard to resist.  This will take a while, and I WILL have to earn it.  The harder I work, the more reluctant I'll be to allow myself to waste that effort.  My goal for my next clinic appointment in May is for my FEV1 to be above 70%.
Now for the funniest moment of my appointment which happened at my initial weigh in as Joanne, the Clinic secretary, had me step on the scale then went to write my result in the chart, only to come back because she was sure she had misread the scale ... I'd gained 15 and a half pounds since they'd seen me six weeks ago : ).

So all in all, when asked if I'm happy with my results today I'd have to say yes, but am I satisfied? Not a damn chance.  When I started this a month and a half ago, I knew it was marathon, not a sprint.  All today really did was reinforce that belief.  Today marked the first mile.  And thanks to all my family and friends that have been encouraging me so far because you have no idea the impact you've had in helping me keep going.  It helps to know that I'm not on my own in doing this and if I start to let my foot off the gas a bit, there'll be a full bus load of people right behind me to kick me in the ass and get me back on track : ).

Day 31 - Birthday goodness

So, it's been a few days since my last update.  And oh it's been busy.  I was doing some time math the other day.  I average about 7-8 hours a night of sleep, I work for 8 hours a day, you add in two hours commuting and an hour for getting ready in the morning, that leaves 5-6 hours.  The first 2 hours after work is with the girls, giving my wife a little bit of a break before their bed time and allowing me to spend some time with them.  Now we're down to 2 or 3 hours for treatments, exercise and maybe a little unwind time.  So, needless to say, days are a little jam packed.  The great news is that after one week of that schedule, I'm still feeling great.  I'm doing a better job of letting my wife know when I need to take time for my health and as always, she's been amazing at picking up the extra slack.  It's always tough for me to step back and say I can't do something, or that I need to step away from my responsibilities as dad and husband.  I always feel guilty that I need to do more around the house, feel like I'm carrying my weight.  I even say this to my wife at times, which is invariably followed by a look of incredulity from her as she cites the above daily routine.
Whats made this week even more crazy is that Today we had the girls FIRST birthday.  It was the greatest scene of disorganized chaos.  The present unwrapping was done in breakneck speed as the girls cousins Madi and Abbie tried to see who could bring the presents to Auntie Carrie the fastest.  And the girls first birthday cake seemed to be a hit as is evidenced below:

Besides the sheer awesomeness of my daughter forgoing the use of hands to simply faceplant into the icing, my favorite part of this picture is in the background.  If you look closely you can see Fiona lurking, just hoping that one of them will pitch some cake her way.  The party was awesome, Carrie's parents got up at 5am in order to make the trek down and arrive on time.  And another thanks to my mom for coming out yesterday and helping us with the preparations.
On top of all this, my goals are still going great.  Despite the increased activity of working and continuing to exercise consistently, my weight managed to go up by another 2.5 lbs this week.  That means I'm now halfway to my ideal weight goal.  Next update will be my first post clinic update.  I'm actually looking forward to this appointment as I can see just how much progress my hard work has brought for my PFTs.  A read  great point on one of the other CF blogs, it doesn't matter what your PFT's are compared to others, its how they do compared to yourself.  6 weeks ago my FEV1 was sitting at 58%, I'm really interested to see where they are now.

Day 26 - Hi Ho, Hi Ho, it's back to work I go.

Decided tonight would be a good point for a one month recap.

Over the last four weeks I've been slowly adding ball after ball to the juggling act.  In week one it was making sure I was 100% compliant with my diet and treatments.  I've been tracking my daily nutritional intake so that I can see if I have an off day, I can know I need to pick up my socks the next day.  I also haven't missed a single treatment in the past four weeks.  All the pills, all the nebs and all my physio.  This may seem like a simple step, an easy win that anybody with what I have should be able to do, but for me I've always struggled with a memory block.  When I was a teenager my doctors and parents worried about why I didn't take my enzymes consistently.  People were convinced it had to be that I was maybe ashamed or trying to hide my condition, or maybe I was just trying to rebel.  It just didn't seem fathomable that I was just plain and simply forgetting to take them.  Looking back I can only imagine how inane it sounded and to this day when I tell people that this was the case they just look at me with incredulity.  Generally it ends in this face

This is actually a look I probably get at least once a week from my wife ... and usually deservedly so.

Anyways, week 2 was the introduction of 5 or 6 days of exercise a week made up of a combination weights and cardio.  I've been managing 3 weight work outs a week where I've been slowly ramping up the intensity as my muscles return from their exile.  I've also been doing three days of walking or running for between 30-40 Minutes and two days on an exercise bike for a similar duration.  So far so good.

Week 3 was the reintroduction of my awesome family.  I missed them like heck for the two weeks they were visiting my wife's family, but having them here does mean I can't be as selfish with my time.  As many people have told me, taking care of myself now will help them in the long run, it's sometimes hard to see the forest for the trees, but I'm doing my best and my wife has been awesome and amazingly supportive picking up the slack.

Now it's week four ... the re-introduction ... of work, dunh dunh dunh.  This is the last ball that needs to fit into the juggling act and so far so good, it's only been two days, but my energy level has been good.  I don't feel like I'm going to pass out at my desk as the day goes on.  Yesterday I took my rest day from exercise, but today I managed both a gym workout and a 30 minute walk/run along with a full day of work.

I know there will be set backs, but so far it's been nothing but positive results.  As for my quest for the sun run, looks like it is officially a go.  I've already hoodwinked my 60+ year old father and my Brother-in-law into joining me in my personal flagellation, but any one else who wants to step up to the challenge are welcome.  My surgery is booked for April 17th, which is two days after the run.  So while they may have to wheel me in because I can't move, but it's on like Donkey Kong.

Day 22 - Freedom from the tubes and thieving is bad.

So first I'll start with the good news.  Yesterday was my last day of walking around all tubed up and carrying my manly man satchel.  My weight has also kept going up, not as much as before, but that's to be expected.  It's now up to 142.5 which means I've gained 12 pounds over the last 4 weeks.  I've added a little weight graph tracker to show my progress towards my ultimate goal on the left there.  I'll be adding a new one showing my lung function's progress once I get my PFT's done on the 21st of March.

Now onto the Sesame Street Lesson of the day for Todd brought to you by PBS.  Last night I went to the gym and took the dog out for exercise.  While I was playing with the dog I hid my wallet, phone and iPod under the seat.  On the way home from that I opened the window a crack for some air.  This morning I realized that I had left all of those things under the seat last night and hadn't rolled the window back up.  I realized this because when I went to my car my glove box was open and its contents were sitting nicely on the passenger seat.  Wallet ... gone, cellphone ... gone and yes, iPod ... gone.  Now the easy road to take would be "Stupid Thieves" and "Thieves Suck" maybe with some more colorful language, but I'm trying to keep it classy here.  The truth though, is that this was my own damn fault.  The last month, I've been focusing hard on my health, doing everything right for it that I can, no missed treatments, no missed workouts, no missed meals.  Very focused ... and perhaps a bit too focused.  The lesson I'm choosing to take from this is, that while its great to focus in on one element of your life, you have to be careful not to miss the rest of the stuff that needs doing. I can be bit of a victim to tunnel vision, focusing to the point of obsession on one thing and letting all else slide.  The key to making my life and my CF Life as good as possible is finding that healthy balance where I'm doing everything I can for myself, but also trying to juggle work, being a father and all the other little minutiae.  It's not an easy task by any means but it is doable, and its just one more thing I'm working towards :).

Day 18 - Running ... you cold hearted b@!#$

So, for anybody who knew me when I was a kid, knew that I used to be pretty good runner.  Cross Country, Track & Field, Sprint or Distance, it didn't matter.  Around the time I was 15 I was doing the 10km Sun Run in just under 50 minutes.  I'm not sure what changed, but somewhere around the age of 16 or 17 I began running less and less.  Probably had something to do with getting a license and absolutely nothing to do with the fact that, oh yeah, running is kinda sweaty and requires effort.  I was still physically active, I still played sports like hockey, I just didn't really run anymore.

Now, why am I rehashing this fascinating history from yesteryear.  Because, two days ago I tried running, and then today, I tried it again.  And I've come to the conclusion that ... wait for it ... running is hard.  I've learned two key details and come to one clear yet subtle conclusion, all of which some of you may be unaware of.

Observation #1: Running downhill seems easier
Observation #2: Running uphill seems tougher
Conclusion: All runs were all downhill, people would probably do it more.

Unfortunately, I've yet to find a running route that departs from my house and then arrives back at the same house that meets this all downhill requirement, but I promise to keep searching.

The only bad news that resulted from this is that I'm afraid I'm going to have to disown my dog.  She seemed to take far too much pleasure dashing ahead of me, turning around and looking back at me as I gasped towards her. She is impertinent and needs to know her place ... show-off. (I'm only kidding, I could never get rid of Fiona, she does too much good work cleaning up after the girls)

In all seriousness, even though I was unable to go for more than a couple hundred meters at a time without needing to walk for a stretch, I was still really happy just to be out there moving.  And I know if I work at it, it'll only get better and better.

So with that being said, I'm going to lay down the public smack down gauntlet on myself.  It is March 4th today, the Vancouver Sun Run is on April 15th.  That gives me 42 days or 6 weeks to work towards a point where I can complete it.  I'm not saying I'm going to run the whole way ... in fact I'm saying right now that's probably not going to happen, but I will complete it and do my best to run for as much of it as I can.  There is only one out that I will provide to myself that will prevent me from doing this.  I'm still waiting on my Hernia surgery date, so provided that that date does not fall between now and the Sun Run, I will be taking part and anybody can see how I do by reading a copy of the April 16th Vancouver Sun Newspaper.  I may also let people know on here as well ... if I'm still moving afterwards ; )

Day 15 - PICC's or Ports ... you decide

One of the topics I've noticed among CFer's is the debate between whether or not to take the plunge and get the surgically implanted port or stick with getting PICC line's every time you need IV antibiotics. Before I get into the pros and cons, I want to give a brief background for people reading this who are not overly familiar with CF patients and IV antibiotics.  When our lung infections get bad enough, CF patients require heavier antibiotics via intravenous infusion.  The problem with these meds is that they are so strong that they cause the veins to collapse, typically in less than 24 hours.  Meaning we would need a new IV daily ... obviously, not a fun idea.  This leaves two alternatives, PICC lines or IVAD ports.  PICC lines (Peripherally Inserted Central Catheter) are a catheter/tube typically inserted into the arm just above the elbow (I've heard they can also be done on the leg as well), the tube then follows the vein all the way to the patient’s heart.  This means there is no vein that can collapse and the meds get dispersed so quickly by the blood flowing through the heart that they don't cause damage there (This is a VERY rudimentary description, but good enough to allow people to get the gist).  IVAD's (Intra Venous Access Device) are a small domed port inserted subcutaneously beneath the skin and stitched into the muscle with a tube that in my case goes from my port into the jugular vein and then onto the heart. 

First here are two pictures of my port, one from the side and one front on (please pardon my pasty whiteness, it rains a lot here):

Now I'm not going to get into the medical benefits between the two because ... well, I don't really know them and I'm not a doctor.  All I'm going to do here is describe the pros and cons of having a dome as I've see them for myself.  So the pros first:

1)Whenever I go on IV antibiotics I just stick in a needle slap on a Tegaderm op-site bandage and I'm good to go.  With PICC's I always just found the insertion process to be a bit of an ordeal, uncomfortable and yes, painful.  When I'm sick, the last thing I wanted to go through was something that hurt.

2) Perhaps one of the more superficial benefits, but one that is really great, is the ability to shower properly.  With a PICC, I always had to shower with one arm covered and elevated away from the water while I tried to shampoo one-handed.  With the port, when it's time for my weekly dressing and needle change, I can just remove it all, have a good long relaxing shower without worrying about keeping any specific area dry.  It may seem like a small thing, but I find it really nice.

3)The next pro is a bit more specific to my own circumstances.  I have two infant daughters who grab at EVERYTHING.  They’ve already accidently pulled the needle out of my port once.  Fortunately, because I had the port, all I had to do was replace the needle and redo the dressing over top of it.  With PICC’s I’ve accidently gotten my line caught and given it a good tug which then resulted in me having to go into the hospital, having them re-position it and then do an x-ray to make sure it’s in the right place again.

4) The last pro and probably most important for me, you can still do things while on IV meds.  I'll admit that when I was younger, I would actually play in full hockey games with a PICC line in my arm, under my pads.  Now, while there were never any complications that resulted from this, that may have been more just good luck.  With the Port I can just pull the needle and dressing and then just redo it after whatever activity I wanted to do to try and keep myself fit.  I have no limitations even though I'm on IV meds.

Now here are the cons as I see them:

1)You do have to have minor surgery to have it installed and as a CFer, general anesthetic is not an option, that means you're awake for the procedure.  Now for me I've had a half-dozen hernia surgeries while awake among other small surgeries and procedures, so this didn't really bother me much and yes it hurt a little bit more afterwards than having your average PICC line installed, but not by that much.

2)You have to access and flush the line once a month when you are not doing IV antibiotics.  That means one needle poke a month and while I've heard from some people eventually the skin covering the dome will go numb and it won't hurt anymore, for me this is still not the case.  It does still feels like I'm stabbing myself with a needle in the chest.

3) As with anything there can be complications, my first dome's tube failed after two years due to a random defect.  I still chose to have it replaced even though I’m only on IV antibiotics once or twice a year and have had the new one for two years and a half years now without problem.  Also, because the dome is permanently under your skin, you run the risk of it getting dislodged and needing to have it replaced.  For those who know me, they know I bump into things all the time. Also, as I said earlier, I have two 11 month old girls so there are lots of opportunities for this to happen.  Luckily for me, so far it hasn't.

4) The superficial element.  When you have a PICC and you’re done your IV meds the docs just take it out (or if you’re me, you take it out yourself … not usually recommended, but I was young and impetuous at the time).  With the dome, it’s always there depending on where and how they insert it, it can be fairly prominent.  I decided I just didn’t care anymore and was fed up with PICC’s.

5)Lastly, and this sort of stems from the last point, it can lead to some awkwardness sometimes.  I had my port installed before I met my wife.  Understandably, without going into too much detail, inevitably there came that first time when she noticed it and wondered what that weird lump on my chest was.  Now, luckily for me, my wife was awesome about it and didn't make me feel awkward or self-conscious about it at all.  But of course it is yet another thing for us to perhaps feel self-conscious about.

So all in all, I am very happy with my port and don’t regret it at all.  Hopefully this’ll help people decide that either a dome isn’t worth it, or that, like me, the upside outweighs the downs.