It's been a rough few days while dealing with CMV. I have had it before, but because there were other infections thrown in the mix, I never realized how painful CMV was just by itself. Over the past few days I have been so weak that I have had trouble walking up stairs and opening jars or bottles.
Today and yesterday I spent more than half the day at the VA getting IV medicine. I have tomorrow off, but I still have to administer the medicine myself through a portable IV pump. I feel like an animal whose sole purpose is just to maintain its existence. I wake up, take a handful of pills, I then hook myself up to an IV for a couple of hours, then it's time for the lunch medicine, dinner medicine, another couple of hours of IV medicine, and some evening immunosuppressants. There are a precious few hours in the day where I feel somewhat normal and alert. For the remainder of the time, I am either exhausted, but unable to sleep either due to pain or side effects from all the medicine.
This week my biopsy results from the last endoscopy should reveal whether I still have GVHD in my gut. If not, or if it is minor, my oncologist is willing to continue with the prednisone taper. I am fervently praying that I can get off this medication as soon as possible. Although my faith remains strong, I am battling severe despair as I continue this game of hopping from one infection to another. Currently I am on 85 mg of prednisone, 5 mg of tacrolimus, and 1 mg of sirolimus per day. There is also a laundry list of other stuff, but those three are the most problematic.
Monday, October 31, 2016
Thursday, October 27, 2016
Exhausted but Restless
It's just after midnight, and I'm thoroughly exhausted. Things were looking up for a minute, but I am definitely feeling the effects of the CMV virus tonight: my joints are on fire, my stomach feels like a balloon ready to burst, and now my nose will not stop bleeding thanks to low platelet counts and a ruptured blood vessel. Nevertheless, I have to wake up in six hours so that I can rush off to the VA for eight to ten hours. It's striking that I can go between having a full day off and feeling like I am well on the road to recovery only to be struck down in one day and again wondering in which direction I am progressing.
I have been reading several books recently in an effort to overcome chemo brain. One particular book is entitled Decision Making and the Will of God by Garry Friesen. I have been contemplating what God would have me do should I beat this disease (or should I become disabled). I really do see this chance as my last, and I want to ensure that I use my life wisely. Yet all these setbacks make it hard to finish such a book when you begin to think that the rest of your life might only be a year or so. Right now, I am still at a high risk of the cancer returning or an infection being the end of it all. Thankfully, this 500 page book is really only 200 pages of content so it shouldn't take much time finish. Insightful book, but it didn't need to be as long as it is.
I've also started A Tale of Two Cities, which I really dislike. I went through a literature phase long ago and read many of the classics until I came across A Tale of Two Cities (both Hemingway and Dickens quickly ended my literature phase). The problem is that I got too far into A Tale of Two Cities that I must know how it ends. And because I'm too stubborn, I must find out how it ends naturally; i.e., no looking it up on wiki or reading the synopsis. To make matters worse, it has been so long since I have read the book, I forgot the majority of the plot and have since started over. I bought the Kindle version for 99 cents.
Although cancer wastes a lot of time through appointments or fatigue, it reminds you that time is so precious. There are only a few hours in the day where I feel up to anything. During that time I either want to be physically active or studying something that I have always been curious about. Cancer has really killed my desire for binge-watching television or playing too much video games. Please do not take this as sanctimonious bragging; instead, I am noting that there are good things that can come from cancer or other prolonged periods of suffering.
Anyhow, my nose stopped bleeding, the pain meds have kicked in so my joints are calm, and I need to wake up in a few hours. It's time for bed, forgive any errors above because I'm not proofreading this.
I have been reading several books recently in an effort to overcome chemo brain. One particular book is entitled Decision Making and the Will of God by Garry Friesen. I have been contemplating what God would have me do should I beat this disease (or should I become disabled). I really do see this chance as my last, and I want to ensure that I use my life wisely. Yet all these setbacks make it hard to finish such a book when you begin to think that the rest of your life might only be a year or so. Right now, I am still at a high risk of the cancer returning or an infection being the end of it all. Thankfully, this 500 page book is really only 200 pages of content so it shouldn't take much time finish. Insightful book, but it didn't need to be as long as it is.
I've also started A Tale of Two Cities, which I really dislike. I went through a literature phase long ago and read many of the classics until I came across A Tale of Two Cities (both Hemingway and Dickens quickly ended my literature phase). The problem is that I got too far into A Tale of Two Cities that I must know how it ends. And because I'm too stubborn, I must find out how it ends naturally; i.e., no looking it up on wiki or reading the synopsis. To make matters worse, it has been so long since I have read the book, I forgot the majority of the plot and have since started over. I bought the Kindle version for 99 cents.
Although cancer wastes a lot of time through appointments or fatigue, it reminds you that time is so precious. There are only a few hours in the day where I feel up to anything. During that time I either want to be physically active or studying something that I have always been curious about. Cancer has really killed my desire for binge-watching television or playing too much video games. Please do not take this as sanctimonious bragging; instead, I am noting that there are good things that can come from cancer or other prolonged periods of suffering.
Anyhow, my nose stopped bleeding, the pain meds have kicked in so my joints are calm, and I need to wake up in a few hours. It's time for bed, forgive any errors above because I'm not proofreading this.
Wednesday, October 26, 2016
CMV Back Again
CMV is back again. I'll start antibiotics tomorrow, but at least now there is an explanation for the sickness I started experiencing recently.
Sunday, October 23, 2016
How am I doing?
For those who keep up with my blog, it's no secret that I loathe this question. The answer is that I honestly do not know how I am doing, but here is the state of things:
Physical updates are as follows:
1. I just received a full two days off from the VA. I pray that my appointments continue to become less and less. The more free time I have, the more time I can rest, relax, exercise, and eat healthy--all of which is very important for my physical recovery.
2. We started tapering my morning dose of prednisone. Unfortunately, I have just come from 90 mg to 85 mg. My oncologists are having a discussion about tapering me faster, and I pray this occurs. The medicine is a major obstacle to my physical recovery; it prevents solid sleep and muscle growth. Nevertheless, we have finally resumed the taper after a long pause.
3. Although I still cannot taste anything, I have been eating better.
4. My energy level is still very low, and I have periods where I can do nothing except lie in bed.
5. There are still random episodes of acute joint pain, stomach aches, headaches, and general malaise. Yet overall I have come down on some pain medication so I believe that is an improvement overall.
All in all, things are on the up, and I will do my best to ensure that I progress. Please keep praying that this trend continues; I would like to resume classes in January. Who knows what the future holds or how much time I have, but I am eager to use what time I have left.
Physical updates are as follows:
1. I just received a full two days off from the VA. I pray that my appointments continue to become less and less. The more free time I have, the more time I can rest, relax, exercise, and eat healthy--all of which is very important for my physical recovery.
2. We started tapering my morning dose of prednisone. Unfortunately, I have just come from 90 mg to 85 mg. My oncologists are having a discussion about tapering me faster, and I pray this occurs. The medicine is a major obstacle to my physical recovery; it prevents solid sleep and muscle growth. Nevertheless, we have finally resumed the taper after a long pause.
3. Although I still cannot taste anything, I have been eating better.
4. My energy level is still very low, and I have periods where I can do nothing except lie in bed.
5. There are still random episodes of acute joint pain, stomach aches, headaches, and general malaise. Yet overall I have come down on some pain medication so I believe that is an improvement overall.
All in all, things are on the up, and I will do my best to ensure that I progress. Please keep praying that this trend continues; I would like to resume classes in January. Who knows what the future holds or how much time I have, but I am eager to use what time I have left.
Don't Waste Your Cancer
"What God permits, he permits for a reason. And that reason is his design. If God foresees molecular developments becoming cancer, he can stop it, or not. If he does not, he has a purpose. Since he is infinitely wise, it is right to call this purpose a design." John Piper: Don't Waste Your Cancer.
When I was first diagnosed with cancer in March 2014, I turned to God out of fear. At the time, I was in such poor condition that the doctors were telling my family to prepare for my death. Locked up in the ICU for nearly a month, I managed to survive. However, I was completely disabled for a months: I could not walk, I was blind, I could not eat, I was neutropenic (which leads to many awful infections), and each day was a fight just to remain alive. During that time, I listened to many sermons and prayed about my current and future state. I then underwent six additional months of strong chemotherapy. My goal was to recover and regain my former life. To paraphrase the former BP CEO Tony Hayward after the oil spill, I just wanted my life back. From God, I simply wanted fire insurance, meaning I did not want to go to hell and mortality was certainly on my mind. Nevertheless, once I began healing, I noticed that I was slowly putting God on the back burner while I focused on trying to rebuild and restore my physical life. There were some changes that took place, but most were superficial and not the fruit of a true believer.
"Cancer is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination—all these are the adversaries that cancer is meant to attack." John Piper: Don't Waste Your Cancer.
After relapsing, the pain and suffering from this transplant has really allowed me to focus solely on Christ. The greater the pain, the more I reflect and meditate on His Word without other distractions. It has certainly been a privilege to experience such a transformation--a transformation that I pray remains.
When I was first diagnosed with cancer in March 2014, I turned to God out of fear. At the time, I was in such poor condition that the doctors were telling my family to prepare for my death. Locked up in the ICU for nearly a month, I managed to survive. However, I was completely disabled for a months: I could not walk, I was blind, I could not eat, I was neutropenic (which leads to many awful infections), and each day was a fight just to remain alive. During that time, I listened to many sermons and prayed about my current and future state. I then underwent six additional months of strong chemotherapy. My goal was to recover and regain my former life. To paraphrase the former BP CEO Tony Hayward after the oil spill, I just wanted my life back. From God, I simply wanted fire insurance, meaning I did not want to go to hell and mortality was certainly on my mind. Nevertheless, once I began healing, I noticed that I was slowly putting God on the back burner while I focused on trying to rebuild and restore my physical life. There were some changes that took place, but most were superficial and not the fruit of a true believer.
"Cancer is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination—all these are the adversaries that cancer is meant to attack." John Piper: Don't Waste Your Cancer.
After relapsing, the pain and suffering from this transplant has really allowed me to focus solely on Christ. The greater the pain, the more I reflect and meditate on His Word without other distractions. It has certainly been a privilege to experience such a transformation--a transformation that I pray remains.
Friday, October 7, 2016
More Infections
As an outpatient, I am being treated for two new infections that were discovered this past week. The antibiotics and immunosuppressants are really starting to have a cumulative impact on my blood counts such that platelets, red blood cells, and white blood cell counts are all dropping to uncomfortable levels. Nonetheless, God is good, and these new infections are less painful than the last. For the most part, I'm just very exhausted.
I think that I have resigned myself to the fact that this year will be a constant struggle. I'm not trying to be pessimistic, but I do notice that I'm having a rougher go of things than most other patients.
For someone who used to be physically strong and very self-reliant, this has been an absolute nightmare. However, it has really forced me to focus on what is important in life, and I continue to praise God for the changes that he has effectuated within me--even if it took two rounds of cancer.
I think that I have resigned myself to the fact that this year will be a constant struggle. I'm not trying to be pessimistic, but I do notice that I'm having a rougher go of things than most other patients.
For someone who used to be physically strong and very self-reliant, this has been an absolute nightmare. However, it has really forced me to focus on what is important in life, and I continue to praise God for the changes that he has effectuated within me--even if it took two rounds of cancer.
Monday, October 3, 2016
Back in and back out
Almost as soon as I arrived home from being discharged, I was then admitted to the ER for a bloody nose. While a bloody nose might now be serious for an otherwise healthy person, my case was quite different. My nose had been bleeding for hours a day and for the past two weeks. Moreover my blood counts were low and there was little chance that the bleeding would stop on its own.
Once at the VA's ER, I went through the formal process of checking in, which includes a lot of formulaic questions that have nothing to do with your illness and are merely check-the-box psychological issues: e.g., do you feel safe at home, is someone stealing from you, how often do you drink or smoke, do you have access to violent weapons, etc. Once I passed admission, I was afforded the opportunity to sit in a room and bleed for 14 hours while nobody did anything. I was told no eating or drinking, they would not allow me to take the pain medication that I brought, and they weren't even going to let me take my cancer medicine. Basically, they had no idea what to do with me, the staff took no initiative to deal with the bleeding, and while they were supposed to call the Ear Nose and Throat specialist, they downplayed the situation such that he put me at the bottom of the priority list. This caused me to have to wait a total of 14 hours for the ENT. Again, during that time, with the exception of two individuals near the end of the shift, nobody did anything.
When the ENT did show up, he decided to pack my nose. This means that he shoved an already oversized sponge deep into my nostril. The sponge then expanded further and really pushed everything around in my face; it's quite uncomfortable. I underwent the procedure without any medication because the ER nurse didn't feel like asking for authorization. Thankfully my pain tolerance is high at this point, but some tylenol would have been nice. I wasn't asking for morphine or whatnot.
After the procedure, I was sent back to the Bone Marrow Transplant Unit (BMTU), which really acts more like a family and is very supportive. I have had my rough times and issues with the BMTU, but I've also developed a new appreciation for the unit after having spent time in the ER and ICU.
I'm starting to fade again so I'll work on wrapping up this post for now.
As bad as I felt things were handled at the Seattle VA ER, it reaffirmed my resolve to trust in the Lord for support and never give up the fight. After two weeks in the MICU with C-Diff and everything else, I became very introspective and wanted to have a little pity parties where I focused on the fact that life in the present had become without hope and joy. After reading 2 Corinthians 4:7-18, I realized that though this present suffering is difficult, I will never be given more than I can handle. And while I continue to show my faith and bring glory to God, He is pleased, and I too can find joy in that. Moreover, I have a new appreciation for everything. Just being at home with my wife and free to sleep or read when I please is like a dream vacation.
Anyhow, I think I've used my energy for the day and it's time to sleep. I'll write more later.
Once at the VA's ER, I went through the formal process of checking in, which includes a lot of formulaic questions that have nothing to do with your illness and are merely check-the-box psychological issues: e.g., do you feel safe at home, is someone stealing from you, how often do you drink or smoke, do you have access to violent weapons, etc. Once I passed admission, I was afforded the opportunity to sit in a room and bleed for 14 hours while nobody did anything. I was told no eating or drinking, they would not allow me to take the pain medication that I brought, and they weren't even going to let me take my cancer medicine. Basically, they had no idea what to do with me, the staff took no initiative to deal with the bleeding, and while they were supposed to call the Ear Nose and Throat specialist, they downplayed the situation such that he put me at the bottom of the priority list. This caused me to have to wait a total of 14 hours for the ENT. Again, during that time, with the exception of two individuals near the end of the shift, nobody did anything.
When the ENT did show up, he decided to pack my nose. This means that he shoved an already oversized sponge deep into my nostril. The sponge then expanded further and really pushed everything around in my face; it's quite uncomfortable. I underwent the procedure without any medication because the ER nurse didn't feel like asking for authorization. Thankfully my pain tolerance is high at this point, but some tylenol would have been nice. I wasn't asking for morphine or whatnot.
After the procedure, I was sent back to the Bone Marrow Transplant Unit (BMTU), which really acts more like a family and is very supportive. I have had my rough times and issues with the BMTU, but I've also developed a new appreciation for the unit after having spent time in the ER and ICU.
I'm starting to fade again so I'll work on wrapping up this post for now.
As bad as I felt things were handled at the Seattle VA ER, it reaffirmed my resolve to trust in the Lord for support and never give up the fight. After two weeks in the MICU with C-Diff and everything else, I became very introspective and wanted to have a little pity parties where I focused on the fact that life in the present had become without hope and joy. After reading 2 Corinthians 4:7-18, I realized that though this present suffering is difficult, I will never be given more than I can handle. And while I continue to show my faith and bring glory to God, He is pleased, and I too can find joy in that. Moreover, I have a new appreciation for everything. Just being at home with my wife and free to sleep or read when I please is like a dream vacation.
Anyhow, I think I've used my energy for the day and it's time to sleep. I'll write more later.
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