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Back in Oncology Rehab again, finding it difficult.

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Posted 3/1/2012 5:33 AM (GMT 0)
boogee, i will check with my oncology rehab folks, and see if they know of any "star" qualified centers in the area you mentioned.

david
Posted 3/9/2012 4:23 AM (GMT 0)
UPDATE: THURSDAY

I was unable to keep my PT session on Tuesday this week, too many conflicting appts, plus wasn't feeling well.

I did go today (Thursday), for a full session. I want to tell you, it was all I could do to make it 45 minutes. We went through all my normal routines (the therapist kept asking me if I wanted to back down on some of it), but I was insistent that I wanted to go 100%. My thought - I wanted to see if I had lost all the stamina and strength they claimed I did.

By the time we got through, it was tough just getting back to my car. Fortunately, I was able to drive straight home, and boy, did I ever hit the bed. I am expecting to be very sore tommorow.

Such a tough decision here, do I keep pushing and trying to stay in the PT, and pay for it for days after, or do I drop out for good. I cant find an easy answer, and I can make good arguments for both sides.

My oncologist says, with the damage I have, since no progress has been made in over a year, if it's causing more pain than good, then what's the point?

I don't have to go again until next Tuesday, so I will have the chance to rest up before then. Haven't made any decision, want to go to both sessions next week, and re-evaluate.

David
Posted 3/9/2012 6:18 AM (GMT 0)
Hi David,
Sorry to hear that. However when you say "sore", what do you mean? There can be a good sore, as your muscles have been worked and are recovering for a day or so, or is it a "painful" sore as the nerves got irritated and causing pain that takes days to recover from?
Posted 3/9/2012 3:47 PM (GMT 0)
Squirm,

Definitely not normal "sore" because one works out. Talking about taking the existing pain level back to 6-8 levels, and once it's there, it can take hours of rest, and max. level of my pain meds to bring it back under control. While my oncologist consented to let me back in the program, his personal concern is that the "exercise" is causing more damage than good. It's a real catch-22 situation, because in the 2 months I stopped going, all my levels of strength, endurance, etc, went down 40% (according to the PT therapist). If I don't go, I will just get weaker and weaker, and if I do go, it inflames the chronic pain. And trust me, at PT, all we are doing is baby steps. The guys on the HW Exercise thread would probably snicker if they saw how little I am doing, and how limited I am at expanding any of the routines. Sometimes, just wish I could close my eyes and make this whole thing disapear. Not ready to give up by any means, but deeply discouraged and disapointed, seems like a no-win situation to me.

david
Posted 3/9/2012 4:05 PM (GMT 0)
David,

Do your physical therapist(s) have any recommendations? Have they seen this before in any of their other patients? ...My concern is if you stop, you risk getting weaker and weaker esp in the spine and pelvis area. Definitely sounds like a catch 22 here...

(BTW, with everything that has been thrown at you, I doubt anyone here would snicker, probably the opposite).
Posted 3/9/2012 4:13 PM (GMT 0)
David,
No words of wisdom, just want you to know that, as always, you are in my thoughts and prayers.
Sending a pain free hug from UK
x
Posted 3/9/2012 7:22 PM (GMT 0)
<<The guys on the HW Exercise thread would probably snicker if they saw how little I am doing, and how limited I am at expanding any of the routines>>

David,

Hardly. You've been demonstratively strong and determined when lesser men would have given-in to self-pity and flat given-up. Goes to exceptional character.

Keep hanging in there rolleyes

Mitch in SC

Posted 3/9/2012 7:55 PM (GMT 0)
David in SC, consider embracing the concepts in this booklet, “ Exercise for Cancer Patients .”   It was written for patients experiencing cancer fatigue and pains when starting a new exercise routine.  It stresses that exercise should be personalized & based on individually rational expectations.  A whole section on starting "Slooowwwly" (section title) to avoid over-doing it when you are just getting started (when the pain common).   Many tips given for exactly the symptoms you describe, used by others to overcome the “hump” of getting going. LINK .   (also posted several times in the PC/Aerobic Challenge weekly threads)           Post Edited (Casey59) : 3/9/2012 3:00:54 PM (GMT-7)
Posted 3/9/2012 10:35 PM (GMT 0)
casey:

That is an excellent link -- nice well-written informative document

Mel

Posted 3/10/2012 12:07 AM (GMT 0)
squirm - they reccomend that i try to tough it out, if possible, because they view the good more than the bad, but again, it's me that's bearing the pain, not someone else. every patient there - has an assigned therapist, i have been seeing the same woman for a full year, so she knows me very well. just one patient per therapist at the same time.

overthepond - thanks, that's good enough for me.

mitch - thanks for the encouragement. never been a quitter, i don't know if i am stubborn in a good way, or a bad way, lol. sometimes it pays to duck.

casey - i will look it over, sounds similar to the guide books that i have from the oncology rehab center, they fully embrace the "start" program, which includes mind, body, and soul in dealing with cancer
Posted 3/10/2012 7:44 AM (GMT 0)
... they fully embrace the "start" program, which includes mind, body, and soul in dealing with cancer.

David, I am sorry to hear of the pain you are going through.  I don't totally understand how rehab works, but is it possible for a therapist to come to your home and outline a program for you.  Maybe having a basic piece of exercise equipment which will meet your needs.  Your wife may be involved or maybe a therapist can come to your home if insurance covers it?  I am concerned about you driving your car when so tired.  I wish you the best as you make this decision.

Hugs,

Aimzee

Posted 3/11/2012 2:58 AM (GMT 0)
Aimzee, I meant they are a certified "STAR" oncology program, not start, lol. my mistake.

I had home-therapy when I first came back from the Urostomy surgery, but not qualified at this time. No way to be in a program like I am in at home. There are times, where I am so tired when done, just glad my car knows the way home, lol.
Only takes me perhaps 20 minutes to get there on the average.

I am thinking about dropping to one day a week instead of two sessions. Keeping the Thursday appointments, that way I have plenty of time to get over the session befoe starting still another one.

david
Posted 3/11/2012 6:22 AM (GMT 0)
David,

Although I haven't been posting much recently, i have been lurking. It saddens me to read that this excercise program is taking such a toll on you. Unfortunately so many of you decisions are so tough now. Pain medication, exercise, HT to name a few.

I'm happy that you have good doctors who understand what you are going through. Hoping and praying that things will go better for you.

When I joined this site two years ago I recall reading in horror about your dreadful bladder spasms. I'm glad that pain is gone.

Regards,
An
Posted 3/11/2012 6:41 AM (GMT 0)
Thanks An,

My PC journey has so many chapters in it. The original surgery, and all the strictures and catheters that followed. THen the dreaded radiation adventure, and all the damage it called. Then we went to the Urosotmy surgery, and all it entailed. Not soon after, began the period of all the worsening chronic pain, which I am still living daily. And of course, a rapdidly rising PSA, despite having both primary and secondary treatments. It certainly has been exicting the past 3 1/2 years, or a never ending nightmare, lol. When it rains, it pours, it would be nice if it would stop raining for a while. about as wet as I care to be.

david
Posted 3/16/2012 1:47 AM (GMT 0)
UPDATE: 3-15-12

Didn't make either PT session this week. Tuesday, too weak feeling, felt just like flu symptons - full body ache, etc, but no fever, think the fatigue was just overwhelming. Called and canceled. Thursday - today, after doing 3 hours consulting work - was so drained and achy, couldn't handle the thought of driving across the city to the PT center, and going through 45 minutes of torture.

But PT therapist called me, and we had a good talk. We are going to try a new approach starting next week. Just one session, on Wednesday's (mid-week), and go back to the early morning appointments, so I can get through the PT before I become some fatigued in the day. I had changed appts. to early afternoon to accomodate the consulting gig. That needs to be reversed. Perhaps if I am too tired after PT, then no consulting work that day.

My health is more important than the money to me. The money is just extra at this point, not required or depended upon. But I do have to depend on my health, and I have enough physical limitation as it is. I feel the PT is more important than making the money.

If all goes well, then we hope to get back to 2 sessions a week, within a few weeks. The original goal back in 2010. was to build up to 3 sessions per week. That had never happened, couldn't comprehend that, I would have to spend all the time I wasn't at PT in bed recovering from the previous session.

At least they are good and accomadating at St. Francis Oncology Rehab, they know that every cancer patient has a different situation and different needs. I am thankful for that.

david
Posted 3/16/2012 1:51 AM (GMT 0)
Sounds like a good plan.

You may have to take a few steps back before moving forward

Mel

Posted 3/16/2012 1:52 AM (GMT 0)
Hope to see you sticking with it. Would hate to see you losing more function.
Best wishes.
Posted 3/16/2012 2:03 AM (GMT 0)
That I don't want to do. I know I face a tougher battle ahead, and I am never going to make it, if I can't at least build up to some reasonable level of strength and endurance. That is the whole point to me, and one reason my oncologist isn't eager for me to seek additional treatment at this time. He knows that the additional baggage associated with either HT or Chemo would overload me with what I am dealing with now.

I do get frustrated with me, myself, in these situations. My mind knows what it needs to do, but the body won't cooperate.

To show a real life example. When I did get home today, about 3 pm, I was so wasted (fatigue). Took my next med pass of Loratabs, and laid down in bed. An hour later, laying pefectly still (had the tv on watching a movie), my body was still so wracked with pain. All of my back, right hip, left and right legs down to the ankles. Couldn't sleep (that would have been a blessing), and was almost on the edge of panic from the hurt. Ultimately, the meds kicked in, and took me away from the edgy feeling, and started to get some relief. Ultimately, I fell asleep for perhaps 30 minutes.

This level doesn't happen every day, but pretty well 3-5 times a week. One would think with the level of morphine that goes in me 24/7 and the other meds, there wouldn't be much left to hurt, but such is not the case. I don't want to be even more drugged up. Right now, the balance is pretty good, as my mind stays clear, clear enough to still do complex advanced accounting and forensic accounting work on a consulting basis. I don't want be doped up to where I couldn't think clearly. I would rather feel the pain, then to mess with my head (hope that makes sense).

david
Posted 3/16/2012 4:31 AM (GMT 0)
Hey David,

Do you get fatigued when doing something out of routine? For example, my wife has CFS and whenever she does something that isn't part of her routine, such as taking time off work to go to the dentist, she'll be exhausted for the rest of the day. I say that because I wonder if part of your fatigue could be contributed to something similar?
Posted 3/16/2012 2:19 PM (GMT 0)
squirm - i was disagnosed with CFS back in 2000, after I went through extensive neck/throat radiation for previous cancers. I was under control until I went through the SRT for PC in 2009. Now it's much more severe. Yes, if I do anything (doesn't have to be real physical) outside my careful dailly routines, it can hit me hard. Regardless, by 2-4 pm every single day, whether I am busy or just sitting around, the wall of massive fatigue hits me hard. The only remedy I can do, is to take a 1-2 hour nap, to get enough energy to make it through the evenings. I don't always sleep, wish I could, but it helps just to get off my feet. I can say I understand what your wife is going through.

edc - yes, part of it, is the normal aging process. but a lot of people don't understand the disabilating nature of true CFS. There's a lot of difference between just being normal tired and achy - and that of Chronic Fatigue Syndrome.

david
Posted 3/18/2012 1:27 PM (GMT 0)
Hello David, we were talking about you yesterday and I needed to see how you are doing.  I certainly hope that you can do the once a week rehab.  You do seem determined mentally!  I am sorry your body has not been cooperating.  The type of pain you describe is so much worse than what Ron has been going through.  I know how difficult this has been for you.

Update on Ron isn't good.  He was evaluated by a specialist at the University of Michigan regarding his testicle pain.  It seems he is back on that merry-go-round again.  He had the epidermus removed from the other testicle.  Two years later, it was removed.  Now, the doctor is saying he should have the epidermus removed on his left testicle.  The intent is not to completely remove it.  Seems like we've been through this before.

The pain he is having is "the worse ever" and he's back on the pain killers again.  My poor husband just wants to be away from pain period.  I know you can relate to that.  What is frustrating is this is the same song and dance they gave him the first time.  Now, he is worried they will find cancer.  This has been mental torture for him.  All of these surgeries, and he still has pain.  He says, "What I am going through is nothing compared to David on the forums."  He says you have strength that one can only dream of.  Surgery will be within a month.

In your case, if the doctors could say you have three months and then the pain will be gone and you WILL feel better - the journey would be so much easier to handle.  You are in our thoughts and prayers...

Hugs,

Aimzee

Posted 3/18/2012 5:17 PM (GMT 0)
Aimzee:

Just curious: are you seeing a PC specialist at Umich and if so, who?

You can respond to me via email if you prefer (your email is not available, and I don't want to hijack this thread)

Mel

Posted 3/18/2012 7:13 PM (GMT 0)
Aimzee,

Thanks for the update on poor Ron. I think about him too, and his own private battles. And as his wife, I know how frustrating it must be for you too, to see him suffer so, and you only having so much you can do help him. Aside from the obvious love and support you have for him. I definitely don't ever compare battles from one to another. Each person's journey has its own ups and downs.

Yes, I would love for a doctor to say, if you can just tough it out for another 6 months, thing will start to get better. Unfortunately, that is not meant to be for me. My situation is chronic and permament in every sense of the word. As the cancer continues to progress, its only a question of time (not if), when it starts affecting other areas of me.

Without the pain meds, I would say I would be feeling level 6-8 pain 24 hours a day without any break. On a good day, its controlled to level 3-4, even with the meds. But there is never a time where there is no hurt. According to my own records, I haven't had a day without moderate to severe pain now, since July of 2010. Almost 2 years. Hard to believe.

The human body and mind is amazing, in the fact that I have had to adjust to this new "world", this horrible reality. Considering how much I hurt, and how little I sleep, I keep a pretty good mood most of the time. I refuse to let my hurt rub off on my loved ones and friends. That wouldn't be the real David.

I keep pushing myself in other areas, because through it all, I refuse to let this cancer and this pain dictate who I am as a person. I am constantly helping others in my real life as I have always done. I just can't do as much, or as quickly as I use to be able to do. And I still can't say no to people in need of my help or expertise. It's funny, the last time I was at PT, the therapist said that I really need to learn how to say NO to people, lol. But it's just not me to turn my back on those in need.

I start the once a week therapy this Wednesday. My therapist thought it was a good plan too. And I will do it in the morning, before the fatigue takes over. On Wednesday, if I have any consulting to do, or other errands, it will have to if I have the energy after Pt, not before. That's the new rule. Got to do this for my body.

Give my best to Ron, he must be a tough bird too, lol. There is so much suffering in the world, I don't feel that I am exempt from it, as the good book says, it rains on the just and the unjust, so I never take suffering in a personal way. Some of these people we eye and think, "gee, they get all the luck", I don't see it that way, I don't envy others, as I don't really know what goes on in their lives. I wouldn't trade lives with anyone else. I like my life. I am happy with my life, and in the bigger picture of things, I have no worries. In my mind, eveyrthing is meant to be, nothing is by chance.

David
Posted 3/18/2012 8:21 PM (GMT 0)
Hang in there David. If it does not kill you it will make you stronger. I always hated that saying. It is true though. Todd
Posted 3/19/2012 12:39 AM (GMT 0)
Todd, I have never been fond of that old saying. I would re-word it sometimes, and say If it doesn't kill you, you get to live and suffer through it, lol. Dying isn't the worse thing that can happen, we all have to do it once.

david
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