After two weeks of being in the hospital, I have once again been discharged. Physically weak and mentally exhausted, I am very happy to sleep in a real bed--and just five minutes from some good, uninterrupted sleep.
Thank God for Yeonsil who is taking care of me. I was so physically drained and comatose that I don't even remember how I just got home.
Thursday, September 29, 2016
Monday, September 26, 2016
"On the Mend"
I was told today that I am back "on the mend," which is a phrase I hear often. As much as I hate getting the infections, at least I seem to be fighting them off. The short term goals are to be discharged by the end of this week, get the gut GVHD under control, and continue with the immunosuppressant taper. Once the drugs are issued at a more manageable rate, my immune system can kick in, which will serve as a major catalyst towards physical progression.
I may have mentioned this prior, but because of the situation I am in a completely different ward. Yes, I am fighting off the desire to go ballistic and rant incessantly, I am constantly biting my tongue as I try to remember that we all make mistakes, and I am again confronted with the disparity among personnel quality. Nevertheless, I am in a unique position to demonstrate my faith to people whom I never would have met before. It would be a severe waste of my cancer to sit here in anger, complaining and yelling at the staff like some other belligerent patients that I hear throughout the night. That does not help the patient, the nurse, and it certainly does not make others comfortable.
At any rate, I need to get out of here and fast. For another few weeks, my days will likely be long with multiple appointments; however, sleeping at home is much more preferable than "sleeping" at the hospital.
I may have mentioned this prior, but because of the situation I am in a completely different ward. Yes, I am fighting off the desire to go ballistic and rant incessantly, I am constantly biting my tongue as I try to remember that we all make mistakes, and I am again confronted with the disparity among personnel quality. Nevertheless, I am in a unique position to demonstrate my faith to people whom I never would have met before. It would be a severe waste of my cancer to sit here in anger, complaining and yelling at the staff like some other belligerent patients that I hear throughout the night. That does not help the patient, the nurse, and it certainly does not make others comfortable.
At any rate, I need to get out of here and fast. For another few weeks, my days will likely be long with multiple appointments; however, sleeping at home is much more preferable than "sleeping" at the hospital.
Tuesday, September 20, 2016
Inpatient Again
I've felt better so I'm going to keep this update short and sweet:
I'm back in the hospital with the following issues: GVHD in my upper and lower gut, C-Diff (this is a truly awful disease and my second time having it), CMV throughout my stomach, a very large ulcer, parainfluenza (nothing serious but we have to ensure that it does not develop into pneumonia), and a small remnant of the BK virus still remains.
Basically, my stomach has seen better days, but we are hopeful that nothing in isolation is life threatening and can be treated separately with antibiotics. The pain is intense, but I am thankful to be alive and will continue to stay strong in my faith while praying for physical healing.
I'm back in the hospital with the following issues: GVHD in my upper and lower gut, C-Diff (this is a truly awful disease and my second time having it), CMV throughout my stomach, a very large ulcer, parainfluenza (nothing serious but we have to ensure that it does not develop into pneumonia), and a small remnant of the BK virus still remains.
Basically, my stomach has seen better days, but we are hopeful that nothing in isolation is life threatening and can be treated separately with antibiotics. The pain is intense, but I am thankful to be alive and will continue to stay strong in my faith while praying for physical healing.
Sunday, September 11, 2016
Results from Last Week
The initial results from last week's tests show that I have a very large ulcer in my stomach. Whether this is related to GVHD or not will be revealed in the biopsies, which should come out at the end of this week or the following week. The bad news is that the ulcer is very large and covers a good portion of my stomach. The good news is that the ulcer has not yet begun to bleed and my team already has a plan to get things under control. There is no discussion of surgery or anything else invasive at this point.
Now that I know the cause of my stomach pain, I am making some dramatic changes to my diet. My wife has been good about cooking some very bland food and researching home remedies that might help. She already has a plan that we've put into practice, and I can already feel some results.
Today I was really hoping that I could begin attending church again. There's a local pastor who has been very good about keeping in touch and providing support. Unfortunately, I was up all night from the stomach pain and continue to battle pain management. The doctors assure me that my pain medication will not exacerbate the ulcer; however, it just seems to make sense that the more medications I can reduce, the better off I will be in the long run.
So let's recap here:
It has been 125 days since my transplant. I still have a small remnant of the BK virus plus two other viral infections, which have left me very fatigued and in a state of general malaise. I now have this ulcer, which we are praying is just that--an ulcer and not gut GVHD or worse. Physically, I feel very disabled and can only walk a mile on a good day. Meanwhile my muscle has almost completely atrophied, my weight is now close to the 150s (down from the 190s), and my body shape is like some amorphous blob. My appetite is gone, I hate meal times, and I can't taste food. After eating I usually need an hour in bed for my stomach to calm down. My days are still busy, but I do seem to get one full day off per week. As for good news, the cancer is still in remission and my body appears to be accepting the donor's cells. Also, I am very thankful for all the treatment which has kept me alive this long and continues to show promise.
I'm often asked how I'm doing--a question that I really don't know how to answer. I certainly wasn't expecting this many setbacks nor was I expecting this much physical pain. Instead, I was expecting to be further along than I am now, and I was hoping to be on a more defined road towards recovery. Yet, God has grown me in ways that I could never imagine. I wish that I could say He were done so that my family could get on with their lives, but His plan is not mine and He knows what is best. I have to continue to stay strong in my faith and push myself when I can.
Now that I know the cause of my stomach pain, I am making some dramatic changes to my diet. My wife has been good about cooking some very bland food and researching home remedies that might help. She already has a plan that we've put into practice, and I can already feel some results.
Today I was really hoping that I could begin attending church again. There's a local pastor who has been very good about keeping in touch and providing support. Unfortunately, I was up all night from the stomach pain and continue to battle pain management. The doctors assure me that my pain medication will not exacerbate the ulcer; however, it just seems to make sense that the more medications I can reduce, the better off I will be in the long run.
So let's recap here:
It has been 125 days since my transplant. I still have a small remnant of the BK virus plus two other viral infections, which have left me very fatigued and in a state of general malaise. I now have this ulcer, which we are praying is just that--an ulcer and not gut GVHD or worse. Physically, I feel very disabled and can only walk a mile on a good day. Meanwhile my muscle has almost completely atrophied, my weight is now close to the 150s (down from the 190s), and my body shape is like some amorphous blob. My appetite is gone, I hate meal times, and I can't taste food. After eating I usually need an hour in bed for my stomach to calm down. My days are still busy, but I do seem to get one full day off per week. As for good news, the cancer is still in remission and my body appears to be accepting the donor's cells. Also, I am very thankful for all the treatment which has kept me alive this long and continues to show promise.
I'm often asked how I'm doing--a question that I really don't know how to answer. I certainly wasn't expecting this many setbacks nor was I expecting this much physical pain. Instead, I was expecting to be further along than I am now, and I was hoping to be on a more defined road towards recovery. Yet, God has grown me in ways that I could never imagine. I wish that I could say He were done so that my family could get on with their lives, but His plan is not mine and He knows what is best. I have to continue to stay strong in my faith and push myself when I can.
Wednesday, September 7, 2016
More setbacks
This week I will be undergoing a series of tests to determine if my GVHD has returned. Because I am exhibiting symptoms of gut GVHD, I'll undergo an endoscopy this Friday and other procedures as well. It's highly possible that this is all related to an infection that I've contracted, but until confirmation we are going to halt the immunosuppressant taper.
Saturday, September 3, 2016
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.
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.
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