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.

Endoscopy

Preliminary results from my endoscopy show ulcers in three separate areas of my stomach. The gastroenterologist took about 12 separate biopsies in order to detect GVHD or CMV. The ulcers do not concern me since they are a side effect of medication, particularly the foscarnet. The prayer is that there is no evidence of GVHD (which could require increasing the immunosuppressants that I have been trying to taper) or CMV (which would result in more foscarnet or ganciclovir). Right now, I am on a break from foscarnet while we await the results. I'm hoping this break is permanent and that I start to feel the good effects of being off the drug. Because I was on foscarnet for so long, my oncologist said that I will not likely see a noticeable difference for at least a week.

I had been feeling very anxious about the endoscopy, fearing the results would show either GVHD or CMV. I started to become frustrated and angry at the thought that I might have to deal with this for another month. (VA policy is that I wait a month in between endoscopies, and an endoscopy is necessary to detect both GVHD and CMV.) It seems like everything that can go wrong, has gone wrong. Moreover, I am tired and burned out from the constant appointments and endless treatment that seems to keep me in a static state where I am like some half-dead animal just trying to stay alive and cope with pain. Today was one of those days that brought all such negativity to light. Once again, what was supposed to be a day off, turned into a seven-hour appointment because of a lack of communication.

Put this into the perspective of someone who has now been going through this ordeal for years and does not know how much time he has left. I can think of better ways to spend my time. At first, I began studying, but not too far into the treatment, I started to hit my wall. Once I hit that wall, there is no point in trying to do anything that requires focus.

Actually, I just hit that wall I was about to describe.

Anyhow, I wanted to finish by stating that after meditating on the Word and reading some of Spurgeon, I suddenly felt a peace that I had not know in a long time. Despite the constant barrage of infections, bad news, losing everything, and feeling awful, I came across the following quote that really made me reflect on my present condition and put life into perspective:

The rest that the Holy Spirit gives under the worst conditions is wonderful. Martyrs have sung at the stake! They have rejoiced on the rack! Bonner's coal-hole at Fulham, England, where the martyrs were locked up, was a wretched place to spend a winter's night. Still the martyrs sang there, and it was the sweetest singing this side of heaven. C. H. Spurgeon.

I would love to write more, but I really have hit that wall. Plus it is late and I have another full day at the VA tomorrow.

Upcoming Edoscopy

Sorry to sound like a broken record, but until I stop the foscarnet, things will not likely improve. This Thursday, on Dec 8 at 10:00 I'll have my endoscopy which will reveal whether I still have CMV or gut GVHD. If I do still have CMV, I'll have to remain on foscarnet until the virus is gone.

I'm really praying that the virus is not there because I am not tolerating this foscarnet well at all. Moreover, I will have to wait another month before I can do another endoscopy confirming the existence of CMV. (The VA has a policy that I must wait one month in between endoscopies.) That means another month at Hotel California and another month of foscarnet.

The headaches are getting worse and my appetite is almost nonexistent at this point. If I don't force myself to eat, I could easily go the entire day without food. I'm convinced the medicine is the culprit because my symptoms are not constant. I wake up feeling relatively okay for a few hours and start a downward spiral as I begin to shove the poison in my body throughout the day. I try to take advantage of the mornings by exercising, spending time in the Word, and eating what I can. By the afternoon, I'm spent and usually in a vegetative state.

I've said it before, but this treatment is making me feel like I'm dying. The doctors say that we are making progress, but after more than 200 days from the transplant, they still cannot provide a clear direction on treatment nor can they provide an endgame.

The bottom line is that a lot is riding on the results of the endoscopy. It will affect my treatment and the time that I remain here in Seattle.