Hanging in (Day 21 on Prednisone)

So things havent been going so well. Really last Wednesday was the last day I would say it felt like the steroid was having a positive-effect in terms of energy and me feeling good. But, seemingly overnight, its like my body has said enough is enough; and my immune system has started to reject the steroid therapy.

SUMMARY OF FEVERS SINCE START OF THIS DRUG ------------------------>
Day 1-3 --no fevers, miracle, I had 36.5 C day and night for first time in 2 months!
Day 4-7 --fever (38.5 C) starts around the time right before single 50 mg dose (at noon). I dont take any Tylenol at this point (prednisone resolves fever)
Day 7-14 --fever (38.5 C) starts 3 hours before first half dose 25 mg (at 9 am); no fever after first dose and before second half dose (at 2pm). I start taking Tylenol (one per night) as advised by respirologist
Day 15-today --fever (38.5 C) starts at first 3 hours, now up to 8 hours before first half dose at 9am (one Tylenol); after this another fever (40 C) returns (2 more Tylenol) and lasts well into the afternoon hours.

I am dealing with fever management for 12 hours (half) of the day now. Switched to Advil as well as it is a bit faster-acting, and the 40 C fevers have me out cold, with whole body chills and barely able to move. It takes about 2 hrs to get the fever down to 38.5 C at which point I start feeling remotely able to function.
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From noon to midnight (my span of no fevers on a good day), my energy level is already not what it was in week 2. Much lower. I cough more.

I saw Dr. Mao last Friday and today for a follow-up. I had taken Chinese herbal tea for past 3 days to:
- eliminate cough (tea not successful; actually coughing more)
- help body rid of phlegm (tea was sucessful; cough was more productive)
- help my weak kidney (detected from my pulse) as evidenced by frequent urination (tea was successful/ woke up less frequently in night for bathroom visits). Side note: he believes weak kidney after chemo/transplant to be cause of fever as doctors have found no evidence of infection and besides that and cancer heat, kidney (blood filter) could be the only other source of fever

Today I got 5 more days of tea to work on the fever/cough. His instinct is for me not to cover-up the fevers with Tylenol (I'm up to 3 per night) as its just stopping the immune system from fighting something; he is hoping the tea will prevent fevers from getting so high.

For relief, today I got suction cup treatment on my back --this is an ancient technique which he suggested to remove any dampness in the lungs (though they have always appeared clear of fluid in scans). This was to help reduce cough and phlegm.

It concerns me that Dr. Mao has said the dose of prednisone I am on, and the length (he just about fell over when he heard they planned to keep me on this for 9 months) is too strong, and very hard on the body.

All this with Christmas right around the corner and less and less doctors around.. I am by no means dropping what the specialists have given me; but my fear and uncertainty would be sky-high if that were my only hope right now. I see its not working; and I am happy to put my hope in the prospect of these herbal tea mixtures helping me, and for those that may worry, I am confident it is perfectly safe with the prednisone. The Chinese doctor is aware and has not given me anything to interfere with or affect immune function. Simply something to relieve the cough/fever symptoms now that the prednisone has suddenly stopped working. I am thankful he caught the weak kidney, and I like the holistic approach of this doctor. In his diagnosis, to my surprise he even detected jaw pain as I have experienced lately. He basically said my condition is simple, "Lung infection that is 'like' pneumonia".

One may ask what about the specialist looking after me.. As of Monday morning, the voicemail at the Respirologist office was, OFFICE CLOSED UNTIL JAN 4th, PLEASE DONT LEAVE A MESSAGE AS WE WONT RETURN YOUR CALL. Very comforting..

I contacted my oncologist at Princess Margaret so that it is at least on file that I am not feeling well, and sadly all he had to say was 'I'm sorry you are not doing well on the steroids and experiencing these fevers; if you feel you cant handle it anymore come to Princess Margaret and we'll get you admitted'. He offered me another CT scan of the chest for tomorrow, but I politely declined, and he didnt push me to come at all, agreed it was better for me to rest and I will get the scan in the new year..

Meanwhile, the natural herbal approach that comes with this new doctors confidence that in a week or so the cough will be better and doctors can start taking me off the steroids, gives such a breath of fresh air. I cannot say how happy I am to have something like this to believe in, at a time when I can see that the therapy that seemed so promising at first, was unfortunately short-lived and the tea brings hope of a desperately needed alternate direction.

On the home front the boys are doing great. Karolek is more and more excited each day that leads up to Christmas. So many events this time of year, they have something to attend almost everyday it seems, and its exciting and I'm so proud of them and happy that they show up in my name as well (as I have been simply unable). I know I have to take it slow, and have been lucky to have friends/family visit me so I'm not alone in this weak state when they are out.. So things are working their way out, we are on eggshells, but just taking it slow, one night, one day at a time :))

I will try to write more frequently when I am able, otherwise Konrad will step in and update as he has been. Thank you all for your concern and well-wishes. Sorry for a long and maybe too-technical update.

Paulina