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Bumpity bump. . . just for those that keep me in mind(and I love you and thank you all):
I was supposed to start my first series of injections tomorrow, BUT, that was because my original appointments were thrown off by the 24inches of snow we got LAST week in the big ol storm. . . NOW, things were thrown off because of Christmas, and I am not sure what is going down. I have neither gotten confirmation or declination of the appt. I am heart broken(insert sarcasm).
There have been a bunch of ups and downs, but haven't felt self righteous enough to bump this, because I don't want it to be all "TATTRAT/Jon" involved, if that makes any sense. . . it is just the net, and I know I have a strong support crew, and HT is part of that crew. I won't bore/concern those further with the "latest and greatest", I will just leave it at, it is what it is, I have not/will not throw in the towel yet, and will continue to deal with this hurdle the only way I can and that is a daily exercise in many practices.
I am thinking right now, that I might try to look into booking tickets to get back to the 808 in maybe(HOPEFULLY) April. I am now over the hump as far as work is involved, and need to start listening to my body, and take some time off. I will have 4 weeks+3 day to burn up, so why not, right?
We will never think you're that self-involved. This is your thread, and you didn't start it, after all. Look how many posts it's gotten!
Once the snow melts, call about your appointments. I know they suck, but just to make sure everything's still on track. We're all worried about you! Then if all's well, go to Hawaii! Go, go!! 3 weeks on the beach is just what you need!
Well, it has been a while, and I thought I may owe some of my HT Ohana an update, so here goes. . .
After next Friday, I will have 1, yes ONE more chemo session to go!!! The pills(Etoposide) I have been taking biweekly have treated me rough. . .really rough. I thought it would be something I would have gotten use to, but not really. My last progress report was iffy. I am showing response, but not as much as my docs have wanted. My primary care doctors believes it is because I jumped right back into work as soon as I could. I told her that I wa going crazy feeling like I was useless, NEEDED to get back to work(for financial and mental reasons), but unfortunately, I feel like perhaps I should have been listening to my body more. ***side note: Every see how easy it is for a doctor/doctors to tell you you can't work? I mean, do their bills pay themselves??*** I will be glad to get this part of treatment over, and anxiously await my results from the next series of CT scans and what have you. I am really REALLY not trying to go to radiated treatments, and with any luck, maybe these devils spawns of pills have dome what they are intended to do.
For the sarcoid, my pulmonary tests revealed that I am functioning on about 78% of my lungs. I have been, and will continue to be on aggressive steroid treatment to hopefully stop the progression, and with any luck halt what is already going on, so fingers crossed9yet again).
I have been more and more on the positive side. I have to be. granted, the bad days(mentally) are still there, and the physical side of things can be discouraging, but I know that the darkness of these clouds can only last so long. I am going to be glad, rather then mad, and stay merry.
With any luck, I may be back out on O'ahu late September, not for moving back status, but as a tourist:-(. Will be glad to get back though, at any rate.
Thx for the update, Tatt. Sorry to hear that your recovery isn't exactly where your docs would like it to be...and that you're not letting that stop you from staying positive. We're staying positive, too.
Tatt,
I watched my wife go from 90%, to 80% down to %50% lung capacity, wearing Oxygen 24/7.
I took her to California for surgery and she's now back up to 90% and building that with exercise and aerobics. She survived. Have faith and hope. Expectations count.
K~
Be Yourself. Everyone Else Is Taken!
~ ~
Kaʻonohiʻulaʻokahōkūmiomioʻehiku
Spreading the virus of ALOHA.
Oh Chu. If only you could have seen what I've seen, with your eyes.
well, it was a year ago today I was diagnosed and was in the hospital . . . what a FAST year!
As of late, things have "stabilized", which is better then getting worse, but not the improvement I was hoping for.
I still continue to get blood work done on a bi-weekly basis to monitor kidney and liver function and to watch cell counts. Lungs are meh. I am constantly on a steroid inhaler but hell, I am still breathing. Being back at work full time has been great though!! A very welcome distraction.
will update this post later when I have a bit more time.
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