Post Treatment Diaries II

[Pancho and Lefty]

Hi Y'all,

I'm probably creating confusion by starting a post tx thread here. One already exists in the 'Prayer and Friends' dept.

My problem is that post tx is a real issue right now for me and I go to "Friends" and get lost or confused or both.

I stopped tx ten days ago. My brain isn't clear. . . my emotions aren't totally stable. The physical sides may be abating. . . ever so slightly.

It's hard to get myself up and moving. I wake up with an ambien hangover and it takes almost 2 hours to get organized. My mind and body are telling me to find a normal rhythm.

I guess that means it's about time to try sleeping without pills. I also take tramadol by halves about every second or third day. Those things are a better tranquilizer and mood elevator than pain pill. I think acetaminophen is all I really need for headache and stuff these days. . . I actually take the tram as a means to calm the mind and emotions. .  . and for discomfort.

PS I'm not. . . not posting to the other post tx thread because I want to be different. . . I'm not doing it because I can't without creating stress. Of course, you're all welcome to join or ignore. . . whatever puts you in your comfort zone.

Sincerely,

Max

[DougV]

Relax Max, won't be much longer now.  I've gone through it twice and both times about the same post tx.  Couple weeks, and things improved.  Month, things improved a lot.  Three months, dang near normal, at most minor things, hair, fingernails. and skin not fully recovered, otherwise all back to normal.  Six months post, as normal as I ever am. 

I never took sleeping aids or other drugs during tx so I can't comment much there, but to say ('cause never can I really not comment at all) I would think that the quicker you get off all things related to tx the quicker you will get back to "normal".  Both from a physical point of view and the even more important psycological point of view.

Crank up exercise a bit, really watch what you eat for a bit to help your body heal.  Lots of rest, fresh veggies, water, little sun don't hurt either. 

Doug

[robin]

Hey Max...post treatment can be hard and lots of people will agree with you that the party doesn't begin with the last done of Peg and Riba. Sleep is so important, can you reduce your ambien dose or maybe take it a couple hours earlier so you don't get the hangover effect. Best thing is TREATMENT is OVER!!!!!! WhoooHooooo. Keep your spirits high...robin

[Corbell]

Hi - I'm glad you posted here - I never found the other one anyway....brain just aint what it use to be...Yep - sometimes I think I'm worse post tx - been 2 months today and am still up most the night fighting pain. Got ice packs on the hips right now where I got he steroid injections today - hope to be able to walk tomorrow if all goes well. The oncologist i saw today informed me that with us delcate ones (those with pre-existint conditions - RA in my case) that nerve damage is a side effect and seems it may have got me pretty good from the waist down. Doing some tests in the next few weeks.
 
Anyway I just thought I'd try to make you feel a little better knowing I'm suffering with you and "I feel your pain" it really sucks when you have such high hopes all wll be better at he end.....maybe in 6 months huh.

Don't worry to much about the sleeping pills - they really help for me now - when I'm better I won't need them anymore (yea like they work anyway - still up and took a Lorazipam and a Soma 2 hours ago...oh well)

Saying a little prayer for you - hang tough and keep journaling - it really helps,

Corbi

[Pancho and Lefty]

Hi Y'all,

You're all a great inspiration. I guess I've traded the side effects of treatment for some confusing head games. There's nothing really wrong with me. . . I just can't figure out what I should do next. . or how to make it happen if I did know what to do.    Course, that's not really a problem. . . things that have to be done will still be waiting when I get to them.

Good luck with your testing Corb. . . I hope things are the best they can be. Thanks for sharing about your condition. I tried to do some organized research about treatment and the sides and never learned about the auto-immune stuff until after I started. Hang in there.

Hey Robin and Doug: thanks for the words of encouragement.

Right here. . . just for today. . . I'm going to do my best to make sure any confusion is a result of things that happen outside my head. 

Peace,

Max

[Lee]

Max...though I can't quite relate to post yet, I certainly appreciate the input and the insight to know potentially what to expect...that is so very important for it is the next step after tx.  I agree with my fellow posters...this is a good place for the thread...it is very difficult at times to find what you are looking for.

I know that all will be well for you, will just take a little time...you are a strong and loving spirit...and you know yourself far better than most...hold on to the thought that things will improve....and as you see the little bright spots...add them to your post tx gratitude list.

Blessings always,

Lee

[Pancho and Lefty]

Hi Y'all,

It's been two weeks since the last chemical infusion. I can see I'm getting stronger. I can ride harder and farther on a bicycle. It is taking effort and commitment to regain strength, and I'm nowhere near back to where I was pre-tx.

Had a couple real confused days last week. Overall it's been a bit of a roller coaster mentally and emotionally.

The riba tension seems to be lingering. If I let it take hold things get confused in a hurry. 

Right now. .  I breathe in. . . . breathe out. . . and relax between breaths.

I try to focus on things that are real and true in a world of false images and misrepresentations.

Adding the tx curriculum to my resume has added a perspective to my general outlook. I'm reminded that all life is sacred. . . never any exceptions.

Peace,

Max

[Mongo]

Nice, nice work, Max.  This path of discipline is already paying dividends, or at least appears to be...

As my physical self heals, I am very much looking forward to a more active life.

Thank you for sharing...and i agree; all life is sacred.


Good Night,


Kerry

[Hank's mom]

Max and Kerry -

The welcome back committee has done all they can, but now it's time for you to head out on the wonderful voyage of post and abbreviated tx. As with everything else in life, the greater the difficulty, the greater the reward. I never thought I'd think of it that way and am happy to report - it's pretty darn terrific

I have been enjoying the happy world of confusion and can tell you it sure keeps my days interesting and filled with adventures. I got upset at first, but now I find to be pretty darn amusing. I can imagine watching some chuckle-head like me and making bets about where I'd land and what words would fall willy-nilly out of my mouth. It's been one of those times during which I'd be in a world of hurt if I took it too seriously, so I don't, Tee Hee.  Life is so precious, more so to me after all the trials with my health, that I won't allow it to be diminished any more by giving the current state of affairs any more attention than I absolutely must.

One very good thing that has come out of both the whole getting lost thing, and the price of gas is that I am back to walking. The beach of course is available, but the mileage happens when Hank and I walk to town for a big cookie to share and lemonade for me, the ice for him. Woohoo - we're getting about 5 - 10 miles a day and believe me his butt  is really showing the benefits of our outings.

As the Beatles sang - Ob la di, Ob li da, life goes on, hey, la la la la life goes on - ain't it grand!

Keep smiling,
Susie

[robin]

Ummm...you could make everyone's journey easier Mom if you made enough cookies and lemonade for us all. 

Keep your spirits high...robin

[Hank's mom]

Robin - Asked for and you shall receive.

Susie

[Pancho and Lefty]

The welcome back committee has done all they can, but now it's time for you to head out on the wonderful voyage of post and abbreviated tx. As with everything else in life, the greater the difficulty, the greater the reward. I never thought I'd think of it that way and am happy to report - it's pretty darn terrific

Well Susie,

All in all, things are coming back pretty well. I get out about every day. The time line on getting back to pre-tx fitness level is yet to be determined. The stuff has some interesting effects on muscle strength and aerobic endurance. Willy. . if you're out there. . . some interesting data could be gathered by testing for VO2 max before, during, and post tx. It leaves with the treatment. . . and takes a surprising amount of work to reclaim.

Course, age is a factor. It was before tx. 

Peace,

Max

[Pancho and Lefty]

Hi People,

Life goes on. . .  Had an interesting episode the last few days. It's time for my six month dental check up. I was very interested in x-rays, cleaning and the like.

I got a robot call on Friday, and a call from the scheduler on Monday for a Tuesday appt. Then I got a call Tuesday, the day of the appt by what must be the x-ray taking tooth cleaner. She wanted me to reschedule at the last minute. She used some interesting (very primitive. . . I'm going to examine them) communication techniques to get me to go along. Anyway, I held my ground against an aggressive woman. . . didn't get angry. . . and made the point to the office manager that I expect never to have a similar experience.

No, this doesn't sound like anything special to me either. . . except that it's something I haven't been able to do for the last six months. That is, without going ballistic and leaving everyone with the 'justifiable' opinion that I'm the asshole.

I'm going back for some work by the dentist in about ten days. I'll leave a gentle reminder about communications by his staffers.

Man, I love having my mind back. 

Peace,

Max

PS Wow, I just got a call from my sister who has been getting chemo and radiation for brain cancer. She can return home to Odgen, Utah from Omaha after October 6. Apparently the potential bad sx for her treatment didn't materialize. She's had a great outlook all along and isn't surprised those bad things didn't happen. I believe it reflects her level of faith. She believes the prayers offered for her made the difference. I know there were a lot.

I just canceled airline tickets for my mom and me. We were ready to go out there.

Life is  very good.

[Helen]

Max,

 Thats wonderful news about your sister. I love those days when life is Really good. 

[Pancho and Lefty]

Hi Y'all,

Thanks Helen. . . it was great news. It's been three weeks today since the last dose of IF/riba. I did not take riba a week after the last shot.

Went out on the bike ride this afternoon I've been trying to get ready for. Last time I rode it was last March just before tx. . . today was another good day. 

Made the climb. . . it took almost 45 minutes for what I used to do in just over 30. Got up there and noticed a whole bunch of little blisters in a V shape on my chest. They stop right at the shoulder line. No, never used to happen. Guess there's still some chemicals in the system.  The hair is still falling out. It's incredible there's any left on top. Ain't much.

The brain fog cleared up quite a bit this week. There is some physical stuff still going on that wasn't happening pre-tx. And it occurs to me to not go out in public more than before. All in all, things are good for three weeks post. Hope all you other tx and no tx and post tx heppers are in a good place today, too. 

PS Whether or not the virus comes back isn't something I think too much about.

Peace,

Max