Sorry to anyone who may be reading this...
This post was originally written on August 27, 2013, but I just corrected a typo, and the post was re-dated with today's date. Lame...
Well, it's been a couple weeks, and I figure about time for an update. I'm writing this from my iPad I got for my birthday/Father's Day because I'm not allowed upstairs. My medicine regimen currently has me on 110mg/day of a steroid called Prednisone. Dr. Peterson, the head of the BMT program at LDS Hospital, says a low daily dose of Prednisone is 7.5 mg, and I'm almost 15 times that amount. With all the fuss over steroids in pro sports, I figured steroids would make me stronger, but they make me weaker...extremely weak. I think I've actually gotten weaker - not stronger - since my release from the hospital on July 12. Due to this weakness and the fear of falling down the stairs and breaking my neck, Noelle and I had to move downstairs from our master suite into Abby's room and now Abby has the master bedroom and bath a week or so ago. My doctors are tapering the level of steroids I'm on (we began at 180mg/day), but we'll get down to about 80 or 90mg/day and have to slow or stop the taper until we feel like my body is ale to progress without GVHD getting in the way. Gratefully, there have been no signs or evidence of any GVHD in the eyes, skin, gut, etc. since a couple days following my release from the hospital last month. Just some dry skin (no rash) and that's it.
This post was originally written on August 27, 2013, but I just corrected a typo, and the post was re-dated with today's date. Lame...
Well, it's been a couple weeks, and I figure about time for an update. I'm writing this from my iPad I got for my birthday/Father's Day because I'm not allowed upstairs. My medicine regimen currently has me on 110mg/day of a steroid called Prednisone. Dr. Peterson, the head of the BMT program at LDS Hospital, says a low daily dose of Prednisone is 7.5 mg, and I'm almost 15 times that amount. With all the fuss over steroids in pro sports, I figured steroids would make me stronger, but they make me weaker...extremely weak. I think I've actually gotten weaker - not stronger - since my release from the hospital on July 12. Due to this weakness and the fear of falling down the stairs and breaking my neck, Noelle and I had to move downstairs from our master suite into Abby's room and now Abby has the master bedroom and bath a week or so ago. My doctors are tapering the level of steroids I'm on (we began at 180mg/day), but we'll get down to about 80 or 90mg/day and have to slow or stop the taper until we feel like my body is ale to progress without GVHD getting in the way. Gratefully, there have been no signs or evidence of any GVHD in the eyes, skin, gut, etc. since a couple days following my release from the hospital last month. Just some dry skin (no rash) and that's it.
So, for now, I have once-weekly outpatient physical and occupational therapy appointments, along with weekly clinic visits with a nurse, a PA or NP, and a doctor (or two) and bi-weekly blood/lab tests. In mid-September, I'll have another bone marrow biopsy. That will be a big defining moment for me, as it will show weather we are in or heading into remission or if the cancer is back. If I'm in remission, that's good, and we continue to just check in with my body through the regular clinic visits and watch for Graft vs. Host Disease. If the cancer is back in force, then there's really nothing that can be done, as we have already exhausted our treatment options with the two transplants. I'm optimistic, as my body has responded very well thus far to everything we've done to/for it. I came out of three months with no "maintenance chemotherapy" following my autologous transplant with only 1% cancer cells in my blood. Dr. Ashe said that was much better than expected. Now that my donor's stem cells are producing my blood, we can hope that it's all clean. If not, we'll cross that bridge when we come to it.
It will be about a year before I begin to feel "right," as I'm without an immune system and have to wait until next May/June to receive my first immunizations. Yes, I'll have to be immunized like a baby, starting from scratch. MMR, tetanus, everything a baby gets. I have to start over.
A few weeks ago, I was blessed to have another visit from "the guys." They were here for about 2 1/2 days, and it was great. We ate some really good food and had a great time hanging out together. We went to a Salt Lake Bees game, took a walk along the Jordan River Parkway. Oh, also around Silver Lake, now that it's not covered in snow like it was back in March when they came then. Tanks for your visit, Mike, Steve, Tim and John. Here's a shot of us up at Silver Lake.
Well, somehow, I can't think of anything else to write right now, perhaps other than this... The Philpott family is and has been extremely blessed through these past ten months. We recognize and acknowledge the hand of the Lord in our lives every day. He has been so good to us in sending people to our aid when we have most needed their help. From gifts and food left on our doorstep during the holidays to annonymous deposits into a trust account that was set up for us at Key Bank to people coming over just to check in and say hello and let us know they're thinking about us. We're grateful for it all. It just goes to show that God uses us as His hands and feet for Him on earth.
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