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Still on a downward spiral...not so good at PT

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Posted 2/7/2013 4:21 AM (GMT 0)
It was time for another assessment at Oncology Rehab.  This one was more thorough than the normal monthly ones.   Didn't turn out good, for about the 4th month in a row, my range of motion tests and strength tests decreased even more rapidly then the previous ones.

They also did another test and determined that I was declared to be pretty dehydrated.  This surprised me, because I never restrict liquids, and mostly only drink water.  Because of the neck/throat cancer I had years ago, I am always thirsty - so I am always sipping on something.  They recommended that I start drinking something like Gatorade, and actually start measuring and monitoring my liquids, so that I can see how much I am really taking in.

Also, for the first time, got a steady trend of higher than normal blood pressure readings.  This is odd also, because my long term B/P readings have always been good, and with the weight I have been losing, one wouldn't think it would be increasing.  Going to have to go to my GP to have that checked out.

They want me to see the oncology dietician again, and they are going to modify the mix of exercises I have been doing, to see if they can make any improvements.  My left side how become almost as weak as my right side, covering both sides of my hips and upper legs in particular.  Being a hardened lefty, for all of my life, my left side of my body was always my strong side.  Because of all the damage and pain in my right side, I am guessing that I am overworking the left side, to compensate for the weakness in the right side.

The main person at PT is a great woman.  She came up to me to give me a hug (something she doesn't normally do), and she whispered to me, that I would not be seeing her again, she was having to voluntarily retire, as her breast cancer has come back for the 3rd time, and now it is the worse Type 4 category possible, and they were going to make a final attempt at chemo, but it wasn't hopeful that it would slow things down this time.  She is about 55.  Kind of shocked me, because she looks like the perfect example of health.  Made me feel bad for her, as she is in such rough shape yet still trying to work with me and my problems.

The only thing we still all agree upon, that even though I am still going downhill, that eliminating the PT would only cause the downward spiral to increase.  And that what I am doing, is still better for me, than not doing anything.  It was all I could do to make it through the session today, as I woke up in severe pain, and the PT only made it worse.  But I toughed it out, determined to finish what I started.

Hasn't been a good day, pain wise.  When I finally got home from that and my other errands, I spent the next 4 hours in bed.  Don't like days like this.

david

Posted 2/7/2013 4:47 AM (GMT 0)
David, is there a possibility to swim at PT?
When my dad had advanced PCa, I remember he felt better after swimming.
Sorry to hear about your PT instructor too.
Posted 2/7/2013 5:52 AM (GMT 0)
not the best day for you. Wish there were better words to say.

Still praying for you.
All the best,
Andrew
Posted 2/7/2013 6:02 AM (GMT 0)
Hang in there David. Let's hope for a better day for you tomorrow. no need to convince you to keep gong to PT since you know the benefit. The sun will come up in the morning and you are blessed with a brand new day to do what ever you want to do and what to make of the day. You have a blank canvas to paint or draw on what you are going to do today and what you finished doing this day. Have some fun in the process and best wishes.
Posted 2/7/2013 7:16 AM (GMT 0)
Hi, David
Sorry to hear of the latest developments. I hope the gatorade helps give you some more energy and nutrients in addition to addressing the deyhdration issue. Hang in there! Any update from your bladder specialist?

Best,
David
Posted 2/7/2013 9:39 AM (GMT 0)
A bad day, praying for a good one for you today David. One day at a time.
Thinking of you.
Susan
x
Posted 2/7/2013 12:54 PM (GMT 0)
David, it's actually very easy to become dehydrated. Proper hydration involves consuming half your body weight in fluids (excluding caffeine and carbonated beverages). Dehydration can cause a long list of medical problems, including bowel, kidney and bladder problems, high blood pressure, joint problems, fatigue. The average adult loses about 10 cups of water every day, simply by breathing, sweating, urinating and eliminating waste, according to the Mayo Clinic.

I've cut and pasted a piece I found about the effects dehydration can have on the renal system: As with all of the organs of elimination, when the body is dehydrated, toxins are not eliminated as well. The accumulation of toxins and acid waste create an environment where bacteria thrive. Thus, when dehydrated the bladder and kidney become more prone to infection, inflammation and pain.

When was the last time you had your creatinine levels checked through a blood test (this is usually done as part of an annual physical)? Sounds like it's time for a general physical with your GP to check these things out.
Posted 2/7/2013 1:24 PM (GMT 0)
David, I hadn't read about your neck/throat cancer before. You can't catch a break it seems. Sorry.

Sephie - good helpful post. I have to drink more water. We forget how healthy something as simple as that is. I don't know why it's so tough to manage properly.
Posted 2/7/2013 1:26 PM (GMT 0)
Oh David....I am so sorry to hear that. What a tough day! Stick with that PT and keep your spirits up
Posted 2/7/2013 1:30 PM (GMT 0)
David,
I'm sorry about all the pain and trouble you are going through. I can't even imagine how you can wake up in the morning to face each day. I wish well.
Posted 2/7/2013 1:45 PM (GMT 0)
Davidg, I too struggle with taking in enough fluids. One of the pieces I read said that if you wait til you're thirsty, you are already dehydrated. I also read that it's best to sip water throughout the day...2 to 3 sips at a time constantly throughout the day is thought to be better than gulping a glass or two at the kitchen sink (that's what I've done!). Another interesting piece I read estimates that 75% of Americans are dehydrated to one degree or another, with the elderly and chronically ill being at the top of the list.
Posted 2/7/2013 3:08 PM (GMT 0)
squirm - we have talked about water therapy before. I have access to all kinds of hydro therapy, pools, tubs, etc at oncology rehab - but there's always a catch with my case - with my Urostomy (stoma) - if it gets soaking wet, it will ruin the appliance (device) and cause it to leak. They are difficult to replace without some assistance, because my stoma is both convex (vs. the normal concave) and instead of being shaped oval, its shape almost almond shaped. I would have no easy way to replace a device when it got ruined in a pool, etc. plus my uro feels I stand too much risk of infection being in any kind of public facility like that. great idea, but I can't even safely use our hot tub/spa at home for the same reason.

pro - going shopping for some sugar free gator ade today, I know they make cases of small bottles, just got to find a flavor that I can stomach. I see the bladder specialist on the 18th in Charleston

sephie - some good advice there on dehydration. did not see a cut and paste piece from you, did I miss something? also, did you make a mistake - half your body weight a day in liquids? I took that literally and doesn't make sense, that would mean a 200 lb guy, i.e. would have to take in 100 lbs? that would be like 12 gallons of water, or did I miss something there.

edc - its getting harder to want to wake up some days, giving up has a certain appeal to it when I have a bad day like yesterday, but fortunately - quitting or being a quitter is not in my normal nature.
------------------------
my wife went to bed around 10, late for her, I was still wide awake at 530 this morning, never slept a wink. finally did and got up at 10. you can only imagine how long a day that was for me yesterday. while my name here, purgatory, has never had anything to do with my condition, it has almost become prophetic unfortunately. to be awake for 20 hours a day (like yesterday) just prolongs the torture of being awake.

david
Posted 2/7/2013 3:08 PM (GMT 0)
David -

I have said this to you before, and I may say it to you again and again and again.

Namely, the courage you constantly display in dealing with the lot that life has given you is exemplary, and such a model for the rest of us!

For each of us, there is often a single human quality that we most admire in others, and for me it's courage.

And I see a ton of it in you, my friend.
Posted 2/7/2013 3:16 PM (GMT 0)
81,

I appreciate your kind words, but sometimes I wonder, perhaps its not courage, its just that I am too dumb to duck, lol.

bless you brother, regardless

david
Posted 2/7/2013 3:17 PM (GMT 0)
So sorry to hear about your latest situation, David. You're in my prayers.
Posted 2/7/2013 5:04 PM (GMT 0)
David,
I forgot about your stoma device. It makes sense to stay away from the pools etc, at the risk of infection.

BTW, how is your wife doing from her back surgery?
Posted 2/7/2013 5:38 PM (GMT 0)
David, the piece I cut and pasted was in my post...it just didn't look any different than the rest of what I typed.

No silly...100 ozs. of liquid...the average person should have 8 to 10 full (8 or 10 oz) glasses of water each day. Obviously, the amount is adjusted according to weight.
Posted 2/7/2013 6:34 PM (GMT 0)
sephie, sorry, was looking for something that stood out. they told me at pt yesterday, to aim for 8 glasses a day, min. like you, I am constantly sipping. but with a greatly diminished appetite and a sense of feeling full most of the time, its hard to force extra liquids. got to work on that, I guess.

david

p.s. today is a "normal pain day" for me. I am use to those on a regular basis, but at least it is not horrid like yesterday.
Posted 2/7/2013 8:21 PM (GMT 0)
Oh that you could get some relief. And I feel so bad for this nurse you mentioned. I pray for some good news on your behalf.
Posted 2/7/2013 11:50 PM (GMT 0)
David, I'm so sorry that you are continuing to have such a difficult time.  Prayers continue for you and your family.  If the Gatorade doesn't appeal, try mixing some 'original' gatorade with a bit of lemonade, or even just adding some lemon- makes it taste alot better.  Also try to new 'clear'  Ensure drinks.  Or the kid's Pediasure.  It is for kids with stomach issues. 

 

Posted 2/8/2013 12:08 AM (GMT 0)
David, you could always sip on some POM smilewinkgrin

Ron

Posted 2/8/2013 12:56 AM (GMT 0)
no comment to that, ron
Posted 2/8/2013 2:48 AM (GMT 0)
David,

So sorry to read about your troubles. Thinking about you and hoping that you get some relief.

Wishing for better days ahead for you.

Zimac
Posted 2/8/2013 7:49 AM (GMT 0)
David, sorry things are still not stabilised.
I hope some drinks (not just gatorade) with extra nutrients in them will help. I remember having to have beef jelly to help me recover from meningitis when I was about 10. Perhaps that's an idea or some chicken soup.
I think you definitely need to keep an eye on your kidney function; I've been surprised lately to read about men having kidney problems after things like heart surgery. When you're bagged it must be almost impossible to work out the equivalent of how often you need to pee. (I guess you can tell if the quantitiy changes by how often you have to empty.)
We all need to watch what we drink as I thuink we can have a tendency not to want to drink if it makes us pee too much. But I have found that I prefer to drink too much and have to pee too often than to not drink enough and end up with bad head aches etc.

As ever, wishing you all the best
Alf
Posted 2/8/2013 3:10 PM (GMT 0)
thank you, zimac. hope things are better on your end.

alf - I am luck in that aspect with my "bag". I never restrict liquids, because I have no sensation of urinating. there is no building up, since the bladder is bypassed, so never any urgency, etc. same at night, I do hook up to the "big catheter" bag, only because my device only holds at most, 2-3 hours of urine and they recommend that you don't let it get more than 1/2 full - or you risk having it tear loose from your body and spring a leak.

I do monitor my output at night. I hook up typically to the big bag at 2 AM. by the time I get up, my average is 800 ml. if it drops below 600 ml, I get concerned. some nights, not often, I will find 1000-1200 ml. I believe my record was 1400 ml.

my hooking up to the big bag, I never have to worry about overfilling the device, because even if I did, I would have no feeling or sensation, other than the weight of the urine in the bag.

so back to thirst, worrying about peeing isn't an issue. lack of appitite I believe is playing into it. while I do sip on water all the time, you still have to feel you have room in your stomach to want to chug down a lot of liquid. and if you feel full, you feel full.
kind of a catch 22 going on with all of this eating and drinking stuff.

types of liquid for me - easily water only - 80% of the time. may drink 2 cans of sugar free caffine free soda a day, and perhaps 8 oz of orange juice a week (not a day). I do not drink coffee or tea, or anything that has caffine in it. so mostly water only, which is suppose to be best for you. I don't drink beer, wine, or booze of any type.

hope you are doing better yourself

david
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