Disregard the last post

To make a long story story, I was given the wrong endoscopy report so the GVHD may still be present. Second, the very next day I was told that they have found another infection; and this time, it's definitely true since I'm feeling much worse than I was before. Third, recent evidence from a chest x-ray shows that I might have pneumonia. I am being monitored closely (more VA visits and longer stays!), I am on additional antibiotics, and physically I have taken some major steps back. Every day I have 10/10 migraines, I'm often too weak to even get out of bed, food has gone from having no taste to simply tasting awful (and I've developed mouth sores which makes eating hot food painful), general malaise has increased, and several other ill effects that I'd rather not disclose at this point. Mentally I am so burned out that I find myself breaking down nearly every day.

In addition, I am getting flooded with paper work from various government agencies. Most of the problem lies in the fact that the Exchange, as established by the ACA, really screwed up with providing appropriate documentation. So I get to deal with an insurance provider that is now out of business and was a complete failure, the IRS, and the VA. None of the agencies communicate with each other and the right hand has no idea of what the left is doing. This is true externally and internally. Even today I received a call about endoscopy results that was represented as being recent but was in fact several months old. Why does this happen? Because pathology does not communicate with oncology. It's the same thing every time I go outside the oncology unit or if I have to deal with the administration. That being said, I am still more impressed with the oncology unit here in Seattle than I was with the initial treatment I received in Arizona from a private hospital (and Tucson's VA was dreadful).

Right now I feel as though I am fighting for my life again or at least simply fighting to stay out of the hospital. Pain management is becoming increasingly difficult, and I am in despair that I might not be fit to work this summer. That means I'll lose my job opportunity for sure.

Yet when going through such trials, I do feel better after turning to the Lord in prayer and focusing on Him. He has kept me alive this long for a reason, and I am thankful that I have the chance to glorify Him in what might be my last days or the beginning of a new life. Being human I often fail, and it's getting hard to maintain the faith that things will turn around in this life. Thankfully, there are several truths of which I am reminded; below is just one:

For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your way and my thoughts than your thoughts. Isa 55:8-9.

I don't know what God is thinking, but He's thinking something. And I'm thankful that He is with me as I go through these trials.

Quick update: No evidence of GVHD

I recently had an endoscopy which did not reveal any evidence of gut GVHD; however, the CMV is still present. So what does this mean?

The bad news is that I still have this nasty CMV that is contributing to my fatigue, general malaise, and will require additional antibiotics until another endoscopy reveals that the CMV is gone.

The good news is that I can start tapering some meds again. Going down on prednisone will help me recover my immune system, which can ultimately help fight off the CMV. It will be slow, and I still have to contend with CMV; but this is a positive step forward.

Please pray that the GVHD does not return as I begin the steroid taper. I am very thankful that God has sustained me this far and coming down on prednisone is truly an answer to prayer. That drug has really taken it's toll over the past year, and I was beginning to break down both mentally and physically. I really don't know how much longer I can take being on all these immunosuppressants and steroids. It feels like a slow march to death despite being told that I'm "progressing."

Contaminated vial

In order to confirm whether the recent "infection" was real or the result of a contaminated vial, the hospital took another sample which came back showing nothing. Nevertheless, the doctors want me to take an additional antibiotic twice daily. This is definitely a check-the-box solution.

I think that the duration of time and the amount of medication I've been on has had a very damaging effect on my body. I keep reiterating that although I'm told that I'm recovering, I certainly don't feel as though I'm recovering. In fact, I felt better in September and October than I do now. Ever since I contracted gut GVHD and CMV, I've been on a series of antibiotics that are really wiping me out physically. Moreover, the CMV and GVHD are proving to be very resilient. Adding additional antibiotics to an already toxic and lengthy list of medication is not something that I'm eager to do; and I have started to push back a bit, questioning the direction that my treatment is taking.

Another Infection?

I just received a call this evening saying that one of my blood cultures came back positive for another infection. However, with this particular about sample type, every time that I am called in about an infection, it is because of a contaminated vial.

Nevertheless, I may be hospitalized until the results come out. This game is getting very old. I went from having a couple of days off, to having less days off, and not I might be hospitalized again--all within a matter of hours.

Anyhow, I'm going back to bed. I'm in no rush to get to the hospital.

BK Back Again

Recently I was told that the BK virus is back; however, the silver lining is that I am not experiencing any dire symptoms at this point. Thankfully, it was caught early and I began treatment with cidofovir today. But still, all this medication is pushing my counts down and comes with a lot of negative side effects.

To all those who have been contacting me recently, I'm sorry for the lack of response. It has been pretty hectic with appointments and treatment. Thankfully, my family visited for the holidays. It has been very uplifting having them here, especially during this difficult period.

GVHD and CMV still present

I was just told that my recent endoscopy confirmed three separate ulcers, CMV, and GVHD in my gut. This means that I go back up on the immunosuppressants, I continue ECP treatment (more appointments), and I will continue either foscarnet or ganciclovir. Most likely, I'll be at the VA every day for several hours, and I may have multiple appointments. I am so burned out at this point; this is the worst news that I could have received. Upon hearing the news over the phone I broke down.

At this point, I wish that God would either heal me or take me home. This treatment is destroying me and there seems to be no end in sight. Just when I thought there was a light at the end of the tunnel, it was only a gap before another dark and endless tunnel that I really do not have the energy to traverse. If it were not for God, I don't know what I would do at this point. I alone, certainly do not have the energy to continue. All I can do is pray for strength to proceed.

After His Own Heart. 1 Samuel 13:14

The following is a quote from Spurgeon while discussing David and the trials he endured:

There is a reason for your season of heaviness. Great soldiers are not made without war. Skillful sailors are not trained on the shore. It appears that if you are to become a great believer, you will be greatly tested....The uncut diamond has little brilliance, the unthreshed corn feeds no one, and the untried believer is of little use or beauty. There are great benefits to come from your trials and depression.