Athletics and Post AN Life

[Doc]

@niveklmartin

Oh my...!  

I also had CK in January 2010; two hour sessions over five consecutive days. The dosage I received was established to finish off what was left of my AN after Translab Surgery back in Jul '09. 3cm remained on my Brain Stem. Obviously my treatments were different than yours.

Unlike you, I didn't experience any side-effects from the treatments. None at all! I have no idea which way you should even look for relief but certainly hope things get better for you and soon!

Take Care!
  
Doc

[sunfish]

It is very difficult when you are left wondering if a certain symptom could be the result of CK.  For years, my blood pressure was 115/75, more or less.  The first day of CK treatment, my blood pressure went up to 155/100.  Although it has certainly came back down and stabilized somewhat since then (7 months ago), I'm now on blood pressure lowering meds, and still frequently have borderline hypertension readings.

Have asked several doctors about it, but no one seems to know why this would be.  No one seems inclined to investigate further, either.  I guess hypertension is such a common problem now, I'm just supposed to accept it.

I think that, years from now, a lot more will be known about the potential side effects of these various radiation treatments.

[Seal]

Hey All!!   

Sorry I haven't been around lately, but with family, kids, work, etc., things stay pretty busy ALL the time.    I thought I would update this thread to acknowledge that the next Wednesday April 13th, this will be my two year anniversary of the Grand Event at MGH.    I think at this point, I can leave this thread at its conclusion since there does not seem to be much change now.      No complaints at all.   I have been back to biking now for a good year and a half.    My love for fishing and the open sea has not changed nor does it need to.     I read back over some of the earlier posts, and the comments still ring true.    If you put your mind to it, you'll be able to to whatever you did before.     Sure there will always be those moments in a dark room or a quick turn of the head.     However all in all, I am thrilled to have the ability to still do EVERYTHING  that I loved and still enjoy doing.    On a very positive note, the whole AN process made me step back to re-evaluate my life and family, noting what is important.    So backing off of the heavy duty training or other hard core activities only helped me realize what a wonderful life this is that we lead.   I hope that other AN patients that find themselves in my situation back two years ago can read this progression and know that there is  a bright solid light at the end of the tunnel.      Your life does not have to drastically change, and much of what changes is up to you......in your own hands.      The AN is certainly a life changer, but if you make the effort, this can also be a huge positive change for the good!!!!

Best wishes!
SteveK

[Keri]

great perspective! i hope you come around some of the time!

i do more than before i had an AN. i think i have less fear; i don't want to say i take more chances, in a risky, crazy kind of way, but i don't get as afraid to try something (i guess you figure if you've done brain surgery... )

speaking of biking, i'm more of a distance runner, but i'm going to try to do a 2 day ride to benefit wounded warriors. it's next weekend. yikes! i wish i had a bit more training time; i'm kind of scared but excited too. 65 miles one day; 45 the next. DC >>> Gettysburg. i'm a slow biker and slow runner, but like to give it a go anyway. i don't want to go too fast and fall and whack my head. but biking is a lot more fun than running, in my opinion.

happy ANniversary! there were quite a few of us about 2 years ago.

keri

[Jim Scott]

Steve ~

I cannot add a thing to your genuine, positive comments regarding your recovery.  Your outlook is great.  Your fresh perspective and sincere appreciation for everything you have is refreshing and uplifting.  Kudos for a great recovery and thanks for posting your very positive update.  I hope things continue to go well and that you'll consider revisiting the forums to help encourage and support AN patients feeling a sense of despair or just frustration in reaction to a slow or unsatisfactory recovery pace.  Meanwhile, I know you'll continue to enjoy your post-AN life.

Jim

[Seal]

Hi All !!!

Well I haven't checked in very much lately, and I do apologize for that.   This was another challenging year having been diagnosed with prostate cancer, going through the decision process, and making the same call as done previously with the AN which was "yank it out now while we still can!!"     Again the top team I could find at MGH did a great job; I can't say enough good things about the top shelf professionals at MGH.    So just to at least make a quick comment on athletics, I rode my bike hard leading up to the surgery in July, and the hard work paid off.    Again, I have been way ahead of the curve.     Athletics do pay big dividends both prior and post surgery.   Whether it is walking, swimming, biking, or whatever you can do, the activity will only help the situation.     I know its not pleasant what we all have gone through, but the exercising can help in several ways, most importantly the heart and soul which is the most important part.    I only missed two weeks of fishing this summer, but they kept me off the bike for at least three months (for obvious reasons).    Now with the green light, its back to winter training and getting in shape for next summer.      Best holiday wishes everyone, and keep MOVING !!!

Steve

[HoosierRick]

Steve,

Read through your posts and think it is great!  Sorry to hear about the latest obstacle.  I was thrilled when I saw this post because I enjoy playing basketball and running, as well as casually riding my bike with my wife.  And to hear all the posters and what they have been able to accomplish, gives me confidence that I will again enjoy those things post-op that I did pre-op.

I agree 100% that athletics pay dividends when we are faced with challenges.  Exercising is good for the heart and good for the mind.  When I have a stressful day, the best way to reduce that stress is exercising.  I will either run or play basketball or lift weights, whatever it is, it takes my mind to another place and gets some good endorphins flowing.

Here is to being AN and cancer free!!!   

Rick

[Keri]

Hi Steve,
It's been awhile since I've been on the forum too. Wow, a challenging year - you weren't kidding. I'm glad for your recovery and hope it all keeps going well. Your perspective is true - when you're able to keep active before surgery and all that, it really helps afterward.
I did one marathon pre AN, and have now done...umm, I think 8. I'm going to try a 50k in a couple of weeks (trail). Then maybe try a 100 mile bike thing next October (I can do a 100k option instead if I'd like).
Not everyone feels so good post op, and I feel for them and am always hoping they can recover well.
Thanks for checking in and sharing. Happy new year!
Keri

[Seal]

Dear All,

I just wanted to return since tomorrow will be my 3rd year anniversary of the blessed event at MGH.    Thanks for the previous notes, especially from Jim & Keri.   In fact Jim, I think Keri is making us look like a couple of couch potatoes with all those marathons!    Anyways, I was back to biking before the holidays, and this winter and spring, I am back to full on training for the upcoming biking season.   The cancer scare is in my rear view mirror, and the surgeon at MGH has given me a full green light.     I am very lucky to be 2 for 2 with major surgeries at MGH.    I know not everyone is as lucky, but I also believe that keeping ourselves as healthy as possible certainly improves the odds.    Surgery is difficult enough on a healthy person, but the recovery time is certainly less than normal if your body is already in good shape.   At my age now 55, every day is important to maintain a healthy lifestyle from walking & biking to eating well and passing on "most" of the sugar and bad calories.     From a personal perspective over three years, it is still strange not to have a functioning right ear, and the scalp area of the operation is still without some feeling.    These two issues will never resolve, but that's a small price to pay.    The balance issue for those of you reading this is that it is more than serviceable.   Yeah sure, there are times that you are in a dark room, a quick turn, or just leaning one way too much that you realize that your "old balance" is just not there anymore.     But hey!  We're not 22 yrs old anymore either!!      So with that understanding, what we have left -- post AN surgery -- is just fine and will certainly suffice.    No complaints here.      Plus I have definitely found that the better shape I'm in when biking like I do right now only enhances my balance.     So that alone is a reason to get out and MOVE!!!       Best wishes to everyone, and keep on biking, running, walking, or just moving!   With this weather here in New England right now, we have to take advantage of every day!                     

Regards,
Steve

[Jim Scott]

Steve ~

Thanks for the great update!  I'm so glad to read about post-op AN patients that have a good recovery.  I'm (14 years) older than you and don't engage in strenuous exercises (but do maintain a relatively healthy lifestyle) so I concur with your observation that being in good health is an important factor in experiencing a solid recovery.  Recognizing our post-op deficits (balance, hearing) and adjusting to them is also helpful.  Like you, I've done that almost reflexively, with excellent results. 

Enjoying the slowly-but-surely approaching spring in New England, too. 

Jim

[Keri]

Hi Steve,
It's been a while since I was on here too. Glad to see your progress and your great perspective on things. I'm so glad you've made a good recovery and haven't missed too much fishing time!
I'm still trail running and biking. I'm thankful I am able to.
Keri

[wonky head]

I was wondering more from a healing skull perspective.  My dog and I head butted on the side of the craniectomy and it put me out of commission for a good 10-15 minutes.  Extremely painful.  I was wondering how much a risk it would be to do anything that could subject my skull to being hit say with a ball or something like that?

[pjb]

I was wondering more from a healing skull perspective.  My dog and I head butted on the side of the craniectomy and it put me out of commission for a good 10-15 minutes.  Extremely painful.  I was wondering how much a risk it would be to do anything that could subject my skull to being hit say with a ball or something like that?

I would also be interested in the responses to your question and sorry you were out of commission for that long hoping you are feeling better...

Best Wishes,

[Keri]

You may want to start this as a new thread to get a lot more responses hopefully.
Keri

[MDbluz]

Even though they severed the vestibular nerve I was back on my road bicycle about 6 weeks later. I've already logged a 48 mile ride. I have avoided working out mornings before work until my energy level & fatigue levels return to normal because I want to reserve my strength for my work day. The more activities you do post op, the more your good side is stimulated & the faster the brain adjusts. Enjoy your walks, initially & soon you'll be doing everything you used to. I even got a special earphone that pipes both channels to my good ear for when I ride.
MD