Getting Better....

I am just now recovering from our last trip to Chicago to see the docs there. Our appointment was on Wed. morning, so as we do customarily, we drove up on Tues., arriving at about dinner time. We have been looking for different places to eat, not wanting to necessarily stay with the same chain restaurants we could eat at in Louisville. We found a place that from its web description sounded like a good steakhouse, for those in Louisville think Fifth Quarter. When we got there it was more Ponderosa. We should have left, we didn't, and I relearned a lesson that anyone with a compromised immune system should know. STAY THE BLEEP AWAY FROM SALAD BARS!!! Through all the chemo, radiation, anti-rejection drugs, I don't think I have ever been that sick. When we went to the doctors the next morning, not having slept at all, he walked in and said you don't look so good. My first thought was , wow, you had to go to med school for that? We explained what happened, got scolded for eating "that food that just sits there and rots". He did finally check me out, a task made more difficult by my illness, and found some early signs of Graft vs. Host disease, or GVHD. He said it looked mild, and even continued to lower the dosage of my one remaining ant-rejection drug. He didn't want me back until the end of Sept. so I suppose he's not too worried. So, I guess I won't worry too much either. I'm just glad to be back on solid food!
Deacon John
Feast of St. Rose of Lima
Aug. 23, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Pneumonia...

...stinks. But, I saw the doctor Friday, and she said I was doing very well considering it had only been a week. I don't need Oxygen full time any more, and I am feeling stronger. This was a bit of a setback, and it did upset me because I really was starting to feel much better. I am taking it easy, not allowing this to slow progress on recovery anymore than necessary. Hopefully within a week, maybe two, I'll be back to where I was before this episode of pneumonia. I'll admit I was a bit discouraged, but I will not stop fighting. Before I said my brother and his wife gave this whole fight a theme song, Tom Petty's "I Won't Back Down." Ive decided to add another song, "No Surrender" by Bruce Springsteen. Even the lyrics seem appropriate. Never back down, never quit, this battle can be won.
Deacon John
18th Sunday in Ordinary Time
Aug. 1, 2010
St. Peregrine Pray for Us.
Blessed John XXIII, Pray for Us.

100 Day Tests

Some good news and some,not bad, but a bit odd news. I did hear from the docs in Chicago, and most of the 100 day tests results are in. Everything is looking good, going well, and right on schedule. But, somehow, in the middle of July, I managed to come down with pneumonia. I struggled into my primary care doctor's office yesterday and she immediately put me on oxygen. She almost sent me to the hospital, but instead I went home and am now tethered to an oxygen machine, taking breathing treatments and steroids. But, I do feel better, I guess I didn't realize how bad I felt until I couldn't breathe without struggling. I had a cold in late June but I thought I weas over it. Guess not! So I suppose it's time to slow down a little more, and give myself plenty of time to heal. I am considering a lottery on which body system fails next. Any takers?
Deacon John
Feast of St. Charbel Makhlouf
July 24, 2010
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

100 Days

We just returned from Chicago last night after a long day of testing. The tests were done because it has been (almost) 100 days since my allergenic bone marrow transplant. Tests ran all day, a full skeletal survey, pulmonary function, and a bone marrow biopsy. There was also a visit with the Nurse Practitioner, sitting in for the doctor. Everything seems to be going well, and my recovery is moving along as well as or even better than expected. I was concerned about a rash I have developed since this could be a sign of graft vs. host disease or GVHD. But, there are no other symptoms, and everyone in Chicago agreed that this was probably not GVHD, just dermatitis. They will know more after all test results are in. I am feeling better everyday, getting stronger and able to do more. Everything seems to be on track, and hopefully Poindexter is down and out for good! One small thing though, I would not recommend a 5 hour car ride immediately following a bone marrow biopsy. OUCH!
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Thursday of the 14th Week in Ordinary Time
July 8, 2010

24 Hours...

...from now we will be well on our way back to Louisville. We are getting to go home a full month sooner than we expected, and to say we are excited would be an understatement. We've already packed all we can, and all that is left is seeing the doctor today, coming back to our apartment and loading what we can in the car, and saying goodbye to this neighborhood. It's a very nice place, and for the most part we have enjoyed being here, but it's just not home. After today we only have to see the doctor twice a month. I'm feeling well, have had few problems, so as long as I'm doing well there is no compelling reason to stay. We are just grateful to God that things have gone so well. Getting the chance to continue my recovery at home is wonderful. I believe I can rest better there, and really start getting stronger. Thanks for all of your prayers.
Deacon John
Friday of the Eighth Week in Ordinary Time
May 28, 2010
St. Peregrine. Pray for Us
Blessed John XXIII Pray for Us

Homeward Bound????

Last Wednesday the doctor brought up the possibility of our going home by the end of the month, a full month sooner than we thought. He was quite positive, test results were good, the central line could be removed, and if all stayed well we could go home, since he would want to see us only every two weeks. Unfortunately layer that evening the Nurse Practitioner called to say they wanted me to take magnesium by IV for two days, then regular hydration by IV for 7 days, so the central line isn't coming out yet. But, both anti-rejection drugs have been reduced, I am feeling better, although I'm still very tired. We see the doctor again tomorrow, and hopefully get the ok for heading home. I can't wait to see the Louisville skyline come into view.

Deacon John
Ascension of the Lord
May 16, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

To Sleep...

I don't think I have ever slept this much in my life. Most nights I am in bed by 10:00 or 10:30, and I have to force myself to get up by 8:30. By 1:00 or 2:00 in the afternoon I am struggling to stay awake. I am tired of being tired. I finally managed today to garner enough energy to read e-mail, and write this. I am amazed at how exhausting this is. I have more energy than before, but it is coming back slowly. Ah well, patience, patience, all in good time. God will teach me patience yet.

Deacon John
The Ascension of the Lord
May 16, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us