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.
Monday, September 26, 2016
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.
Monday, August 22, 2016
Long Overdue Update
The following is an excerpt from Spurgeon on Genesis 28:16: Some of you are in deep affliction. Your difficulties are so great that you do not know where things will end and you are deeply depressed. But remember, "Surely the Lord is in this place."
It has been awhile since my last update. I have been frustrated with my progress, and I notice that when I relay my frustrations, it irritates or disappoints others who are reading and following. Recently, I caught another infection which led to an increase in treatment, more visits to the hospital, and a general step back in terms of my physical condition. I got the call the same day I was supposed to sit for an exam. It seems that every time I try to move forward in some small way with my life, the treatment has something else in store.
The infection is not serious; it just means more time at the hospital, my appetite has decreased, the joint pain has increased, and my energy levels dropped such that I would give anything for an uninterrupted week in bed without any responsibilities. Nevertheless, the show must go on and there is something to be said for maintaining a lifestyle beyond treatment.
During this period, I cope by making a list of things to do. I keep up with paperwork (a never ending saga when dealing with the government or healthcare); I continue my studies; I exercise as I am able, which means pushing through the joint pain and avoiding heavy lifting for the moment; I read the Good Book or listen to sermons for comfort, I try to follow politics and business, and I keep track of upcoming milestones. For example, it has now been over 100 days since my transplant.
Not too long ago, the 100 day milestone was a benchmark of sorts. It was the sole indicator as to whether a patient would likely pull through or not. With the addition of new treatment and medicine, this milestone is a bit of an anachronism. Now, if a patient is still struggling with GVHD, there are other methods of combating GVHD. I am currently undergoing several of those methods which appear to be efficacious for now.
The next milestone that I'm eager to hit is September 3. On that day, I will have completely tapered off my evening dose of Prednisone, the nastiest drug in my arsenal of necessary evils. From then on, I will be at 100 mg of Prednisone in the morning and the taper for that will commence shortly thereafter. Getting off Prednisone will be a major catalyst in my return to physical and hormonal normalcy. I also continue to reduce my narcotics intake at a faster than recommended pace. I believe in the necessity of these drugs, but I also believe that getting off the pharmaceuticals is a must.
On a final note, people ask what I eat. I don't go on any crash diets such as the goshen diet, drinking your own urine (not joking about that at all), or relying on some snake oil that so and so is pushing or a panacea that Big Pharma is hiding. Instead, here is a typical meal which consists of water, kefir, mixed greens, a whole avocado, carrots, broccoli, olive oil as dressing, cheese and croutons for taste, a tuna wrap, and some fruit. Now, to dispense with the fact that I'm a perfect angel, I'll admit that I load up on some ice cream or a shake if my weight starts to drop too much.
I have tried Blue Apron based on the suggestion of a good friend. I think there's a market for the product, and I was very pleased with the taste. The problem is that prep time is long and we are often away from the house during delivery. If I take a turn for the worst and need to be hospitalized, it isn't easy to freeze the order. I think Blue Apron and other such products would be a viable choice for patients with set schedules.
For now, I will continue pushing forward and using most of my free time to prepare for this final exam that I hope to take ASAP. Despite the concerns I have over my situation, I am very thankful for my supportive wife, family, network, and a God who is present with me always and greater than cancer or death. Also, Kudos to U.C. Berkeley for being so supportive of this situation. I received a very gracious email from them today. In fact, I have received nothing but good news and support from the school. Go Bears!
It has been awhile since my last update. I have been frustrated with my progress, and I notice that when I relay my frustrations, it irritates or disappoints others who are reading and following. Recently, I caught another infection which led to an increase in treatment, more visits to the hospital, and a general step back in terms of my physical condition. I got the call the same day I was supposed to sit for an exam. It seems that every time I try to move forward in some small way with my life, the treatment has something else in store.
The infection is not serious; it just means more time at the hospital, my appetite has decreased, the joint pain has increased, and my energy levels dropped such that I would give anything for an uninterrupted week in bed without any responsibilities. Nevertheless, the show must go on and there is something to be said for maintaining a lifestyle beyond treatment.
During this period, I cope by making a list of things to do. I keep up with paperwork (a never ending saga when dealing with the government or healthcare); I continue my studies; I exercise as I am able, which means pushing through the joint pain and avoiding heavy lifting for the moment; I read the Good Book or listen to sermons for comfort, I try to follow politics and business, and I keep track of upcoming milestones. For example, it has now been over 100 days since my transplant.
Not too long ago, the 100 day milestone was a benchmark of sorts. It was the sole indicator as to whether a patient would likely pull through or not. With the addition of new treatment and medicine, this milestone is a bit of an anachronism. Now, if a patient is still struggling with GVHD, there are other methods of combating GVHD. I am currently undergoing several of those methods which appear to be efficacious for now.
The next milestone that I'm eager to hit is September 3. On that day, I will have completely tapered off my evening dose of Prednisone, the nastiest drug in my arsenal of necessary evils. From then on, I will be at 100 mg of Prednisone in the morning and the taper for that will commence shortly thereafter. Getting off Prednisone will be a major catalyst in my return to physical and hormonal normalcy. I also continue to reduce my narcotics intake at a faster than recommended pace. I believe in the necessity of these drugs, but I also believe that getting off the pharmaceuticals is a must.
On a final note, people ask what I eat. I don't go on any crash diets such as the goshen diet, drinking your own urine (not joking about that at all), or relying on some snake oil that so and so is pushing or a panacea that Big Pharma is hiding. Instead, here is a typical meal which consists of water, kefir, mixed greens, a whole avocado, carrots, broccoli, olive oil as dressing, cheese and croutons for taste, a tuna wrap, and some fruit. Now, to dispense with the fact that I'm a perfect angel, I'll admit that I load up on some ice cream or a shake if my weight starts to drop too much.
I have tried Blue Apron based on the suggestion of a good friend. I think there's a market for the product, and I was very pleased with the taste. The problem is that prep time is long and we are often away from the house during delivery. If I take a turn for the worst and need to be hospitalized, it isn't easy to freeze the order. I think Blue Apron and other such products would be a viable choice for patients with set schedules.
For now, I will continue pushing forward and using most of my free time to prepare for this final exam that I hope to take ASAP. Despite the concerns I have over my situation, I am very thankful for my supportive wife, family, network, and a God who is present with me always and greater than cancer or death. Also, Kudos to U.C. Berkeley for being so supportive of this situation. I received a very gracious email from them today. In fact, I have received nothing but good news and support from the school. Go Bears!
Wednesday, August 3, 2016
Experiencing the Grind
It has been awhile since my last update, and I am pleased to say that things are progressing, albeit slowly. Nevertheless, there is still a long ways to go and things could change instantly.
The hardest part about life now is the schedule. I wake up at 6:30 am, I'm at the hospital between 7 and 8, I finish the morning appointment between 1 and 2, I get 4-5 hours of free time, and I'm back in the evening for more medication that runs until 10 or 11 pm. Also, several times per week there is an afternoon appointment that sucks up my free time. With my current state, I'm finding it very difficult to keep up and not get burned out.
Through this schedule, I also need to find time to study for one remaining exam and play catchup on life. If I continue to progress towards recovery, I should see my things lighten a bit in September, and I may get some days off by October or November. Since this whole ordeal began in March, I have had only a handful of days off from the hospital.
Also, I have to squeeze an hour of exercise into my day or I get extremely weak because of the steroids. The doctors are very concerned about the amount of muscle atrophy that I have experienced, especially in my legs and chest. It will take several months after I am fully off the steroids before I am able to physically recover and start making some gains again.
In short, I am very burned out and frustrated; yet I have to remember that compared to a month ago, life has improved. It is hard not knowing whether things will continue to improve or what will become of the future, but I'm just going to do the best I can and trust in God for the remainder.
The hardest part about life now is the schedule. I wake up at 6:30 am, I'm at the hospital between 7 and 8, I finish the morning appointment between 1 and 2, I get 4-5 hours of free time, and I'm back in the evening for more medication that runs until 10 or 11 pm. Also, several times per week there is an afternoon appointment that sucks up my free time. With my current state, I'm finding it very difficult to keep up and not get burned out.
Through this schedule, I also need to find time to study for one remaining exam and play catchup on life. If I continue to progress towards recovery, I should see my things lighten a bit in September, and I may get some days off by October or November. Since this whole ordeal began in March, I have had only a handful of days off from the hospital.
Also, I have to squeeze an hour of exercise into my day or I get extremely weak because of the steroids. The doctors are very concerned about the amount of muscle atrophy that I have experienced, especially in my legs and chest. It will take several months after I am fully off the steroids before I am able to physically recover and start making some gains again.
In short, I am very burned out and frustrated; yet I have to remember that compared to a month ago, life has improved. It is hard not knowing whether things will continue to improve or what will become of the future, but I'm just going to do the best I can and trust in God for the remainder.
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