Off the Evening Dose of Prednisone

To start with some good news, I am officially off my evening dose of Prednisone, the most toxic drug in my arsenal of poisons that keeps the GVHD away. This is a milestone that I have been awaiting for some time. The next step is to taper off the morning dose, which is currently set at 100 mg. I should be at 50 mg by the end of the month. That is still high and not where I want to be, but it's much better than before.

Because I have been on Prednisone for so long and at such a high dose, it will take months before many of the side effects are gone. I have lost nearly 50 pounds, but I look as though I gained 50 (all in my face and gut). My muscle is nonexistent, I have severe joint pain due to the taper, there's an odd hormonal imbalance that resembles pregnancy and menopause, and other things I'd rather not discuss. I look in the mirror and do not recognize the person I see--very Kafkaesque. I've probably used this word in the past, but my memory is still recovering and I really don't feel like reading old posts to see if I'm repeating myself.

Speaking of transformations/transmutations, I can tell that others notice the difference immediately. Anyone who knew me from the past instantly remarks that I'm the only cancer patient they know who has gained weight--an assumption based on my bobblehead appearance. I don't mind the comments; cosmetics are the least of my concern and it's all in jest. However, I do notice how differently I am treated by strangers based on my appearance.

Recently, I caught a few infections and my joint pain has increased sharply. As a result, not only does my body look incongruous, but I walk very slowly and with a noticeable limp. The glares and looks I get from others are so appalling you'd think I was a leper. I ventured into Whole Foods today after a appointment in order to get a cake for my wife's birthday. I walked through the store and noticed that I was getting some very intense stares. Even my wife noticed the fowl and disgusting gapes from others and let me wait in the car rather than remain on display.

My initial reaction was anger and misanthropy, but after some reflection I feel fortunate and grateful. Although my appearance is likely to revert back to normalcy in several months, others must live with a disfigurement throughout their lifetime. Obviously, I am aware that they are the victim of discrimination, but I never realized how ubiquitous it was--you can't even walk down the street without some teenager, middle-aged, or elderly person looking at you like they would a zoo animal.

I want this and other experiences of mine to be an indelible memory so that whatever life I have left, I never make someone feel like I have felt during this treatment. I loathe going out in public in my current state, and it's not because of vanity or an isolated incident; it is just plain awkward and disturbing. When my blood counts are low, I wear a mask and gloves--people will usually clear a sizable radius fearing that I'm infected with something. Then there's the usual "ewww gross" stares that I really thought were in my head until recently. This has been very eye-opening, and my heart truly goes out to those who have a life-long disfigurement.

In other news, I mentioned that I contracted some new infections. Life is going to continue like this for another few months I'm afraid. Yes, I have tapered off the evening dose of Prednisone. But, that only amounts to about 30 percent of the total immunosuppressants that I am taking. I still have a long ways to go before I can even begin to feel normal and be clear of infections. It is also going to be awhile before I get to enjoy the sun which can trigger my skin GVHD. The silver lining there is that I'm probably the only person in Seattle looking forward to the rain. Wearing hoodies and sweatpants throughout the heat has not been fun.

Actually, If I weren't in Seattle, I'd think that peoples' stares might have been because of the way I was dressed. However, throughout the West Coast, there's an element of sartorial splendor that rivals modern art. Out here in the Wild West, you see the result of children whose parents never taught them how to dress. Portland takes the lead on this, but Seattle and the Bay Area aren't far behind.

Finally, I would like to present a link that describes how I feel as I met my first milestone while still being GVHD free:

http://www.desiringgod.org/articles/lord-keep-me-desperate

In keeping with the spirit of indelible memories, I never want to forget how desperate for God I have been throughout this ordeal. God willing, I continue to progress physically; but I would pray for a halt should I ever regress spiritually. Even now, with only a bit of healing, I notice the pull to become absorbed in former temptations. I wish it didn't take cancer twice to open my eyes, but it did. There is no third chance, and I don't intend to test that notion. Instead, I pray that I remain steadfast, like the Psalmist: "Before I was afflicted I went astray, but now I keep your word." Psalm 119:67.