We have been in Respiratory Isolation at the U of W Medical Center for the last 15 days. It matches the same time we were here post transplant. We had hoped to be released on Good Friday, but I am still battling life-threatening complications. Something as simple as a common cold can trigger a domino effect of other transplant related medical conditions. We just had a visit from two Drs. from the infectious disease department. It was both sobering and encouraging. They were very honest with us about the possibility of things spiraling out of control and that I could die from these complications. However, they see lots of positive results from a new chest X-Ray this morning and feel like it is just time and vigilant care that will turn the tide. Being here over Easter makes me feel like I am going through my own version of Calvary. The Apostle’s Creed affirms that Jesus descended into Hell between Friday night and Easter morning. I Peter describes what He did over those three days. He proclaimed the hope of the Gospel and led a train of believers out of the darkness of despair and into the light of life.
My best estimate is that I will be in the Hospital for at least another week. I have to get to the point where I have an appetite and can consume enough calories to sustain myself and get the diarrhea I have under control. I have just passed the 50 lb. weight loss mark since I arrived for transplant. I don’t know how much more I can lose and have any strength left. I am weaker than I have ever been in my life and it is very difficult to consistently exercise. I have a great physical therapist, working with me as much as he is able, but ultimately, I have to make the effort myself on a daily basis. Being in isolation makes it that much more difficult, since I cannot walk the halls like I did the first time I was here.
God continues to sustain us through your love, letters and support. We simply would not be able to face all of this without your unconditional love and God’s faithfulness. I was very frustrated and discouraged on Friday. One of the Drs. actually signed discharge papers early in the morning, only to cancel them before noon. It was the correct medical decision, but it is just an example of the roller coaster we seem to be on. I am learning how to be more patient and trust God for each day. My life is not in my hands and I pray that God will bless all of you with a wonderful resurrection weekend. We will be home in God’s time and look forward to seeing all of you. Robin and Kriss
Saturday, April 23, 2011
Thursday, April 14, 2011
IN THE BELLY OF THE WHALE
No one knows for sure what kind of fish swallowed Jonah, it must have been a whopper. He had a distinct aversion for the Ninevites verging on hatred and racism. When God called him to go and proclaim a message of repentance to the Nivevites he took the first public transportation the opposite direction and thought that was the end of it. God’s sense of humor is only rivaled by God’s sovereignty. Though a series of adventures culminating in his expulsion from public transportation, he landed in the belly of a fish and was regurgitated on the outskirts of Nineveh. He must have made a spectacular sight. Bleached like Clorox, whiter than white. Half decomposed strings of skin falling off of his extremities, fish odor and God only knows what other kinds of fish smells. It must have resembled a Norwegian/Swedish Holiday Party with lutefisk and Grog. God gave him a clear message to walk the entire length of the city calling the Ninevites to turn from their sinful ways and embrace the hope of the one true God. Jonah was less than enthusiastic, but with all that he had gone through the last few weeks, he went ahead and obeyed, not expecting, nor particularly wanting much of a positive response. God’s compassions go so far beyond our capacity to love or care. Here were hundreds of thousands of people who didn’t know their left hand from their right and God loved them in spite of it, maybe because of it.
Of course Jonah goes out and sits under a tree and pouts because of his tremendous success as an evangelist. Frederick Buechner notes that “envy is the overwhelming desire to have everyone else as unsuccessful as you are.” God doesn’t seem to condemn Jonah for his callousness of heart. It’s hard to overcome generations of prejudice and begin to see people as God sees them. Now it’s time for Jonah to repent and it was the greater miracle to change that one heart than the thousands of Ninevite hearts.
I have latent prejudices towards cities. It was here, beginning in 7th grade that my father left our ancestral home and went to work for Boeing Aircraft Company. He vowed to come home every weekend to visit us, but one weekend turned into two and then three. One a month was good enough over the winter months when the roads were dangerous between Seattle and Wapato. The money was essential and my parents seemed to get along better apart than together at that stage of their lives. They drifted apart and created friendships and support groups and mutual interests that didn’t include one another. It was inevitable that it would put a fatal strain on their relationship and they just drifted apart. It was a prolonged and nasty divorce. Both sides trying to gain the allegiance of the 11 living children any way they could. Kriss and I and our children were caught in the middle since we had moved Mom back from Vancouver, BC where she had also attended Regent College, quite successfully.
By this time the Wapato Community Presbyterian Church was phasing out of one pastoral relationship and seeking a permanent ordained/installed pastor. The Presbytery of Central WA took me under care as a Licentiate, which category no longer exists, and so I was able to fill the pulpit, administer the sacraments, moderate the session and even qualify to accept the position as ordained/installed pastor with 2/3 vote of the Presbytery after having finished a Master of Divinity Degree from an accredited institution. We moved out of the Blue House on the Ranch and moved into the parsonage belonging to the church in Wapato. I continued teaching French at Yakima Valley Community College and also took German on the side. Hanna had been such a compliant and perfect baby that we thought we had the parenting thing pretty much figured out! What a miscalculation that is on the part of any parent. Each child is wholly unique unto themselves and you have to start from scratch and just know that you have no idea what is going to be in each of their best interests. I guess that’s how God has to deal with each of us, as well. I learned how to be a pastor during those two years in Wapato, the best and the worst of it. We took a mission team to Southeast Alaska for three weeks and saw many lives changed mostly those in our group. Amos was born August 6, 1977 and six weeks later we arrived at Fuller Theological Seminary in Pasadena, CA. How little did we know that we would have been followed by one of the most renowned Serial Killers in the history of American criminal annals.
PASADENA, CA, FALL OF 1977
Fuller Theological Seminary took great pride in considering itself the Princeton Theological Seminary of the West Coast. It wasn’t, except in expenses and a self-inflated set of its own California mystique. Having already received two advanced Theological degrees from truly world class international theologians, I was in no way intimidated when they paraded “super-star” Southern California Mega Church Pastors in front of us as if to say: “ this is what you could become, with our guidance and training.” Horse-pucky. Who would want to be chauffeured around in a luxury automobile to avoid having to drive yourself on the freeway system? You would be amazed how many of those mega-stars went down in flames of public disgrace and humiliation. Jesus calls us to a life of servant hood, not rock star status. I wrote scathing critiques to the professors, but not a single response from any of them. Their Assistants did all the reading of papers and the professors were too busy going out to lunch with the superstars and their Hollywood clientele. It was a valuable lesson to learn in idolatry both within and without the church. In Canada, you could enroll full time as a student and take as many classes as time allowed. At FTS, they nickel and dimed you out of every credit you took and after registering the first day, I had to go home and tell Kriss that all our money was practically gone and only God knew how we could survive the next 9 months. Pollution was at its worst in early September, the kids were not adapting well to their environment and Kriss began to develop a series of bouts with strep-throat that would plague her the rest of the year. And then Anthony Bono showed up on the streets of Pasadena.
Of course Jonah goes out and sits under a tree and pouts because of his tremendous success as an evangelist. Frederick Buechner notes that “envy is the overwhelming desire to have everyone else as unsuccessful as you are.” God doesn’t seem to condemn Jonah for his callousness of heart. It’s hard to overcome generations of prejudice and begin to see people as God sees them. Now it’s time for Jonah to repent and it was the greater miracle to change that one heart than the thousands of Ninevite hearts.
I have latent prejudices towards cities. It was here, beginning in 7th grade that my father left our ancestral home and went to work for Boeing Aircraft Company. He vowed to come home every weekend to visit us, but one weekend turned into two and then three. One a month was good enough over the winter months when the roads were dangerous between Seattle and Wapato. The money was essential and my parents seemed to get along better apart than together at that stage of their lives. They drifted apart and created friendships and support groups and mutual interests that didn’t include one another. It was inevitable that it would put a fatal strain on their relationship and they just drifted apart. It was a prolonged and nasty divorce. Both sides trying to gain the allegiance of the 11 living children any way they could. Kriss and I and our children were caught in the middle since we had moved Mom back from Vancouver, BC where she had also attended Regent College, quite successfully.
By this time the Wapato Community Presbyterian Church was phasing out of one pastoral relationship and seeking a permanent ordained/installed pastor. The Presbytery of Central WA took me under care as a Licentiate, which category no longer exists, and so I was able to fill the pulpit, administer the sacraments, moderate the session and even qualify to accept the position as ordained/installed pastor with 2/3 vote of the Presbytery after having finished a Master of Divinity Degree from an accredited institution. We moved out of the Blue House on the Ranch and moved into the parsonage belonging to the church in Wapato. I continued teaching French at Yakima Valley Community College and also took German on the side. Hanna had been such a compliant and perfect baby that we thought we had the parenting thing pretty much figured out! What a miscalculation that is on the part of any parent. Each child is wholly unique unto themselves and you have to start from scratch and just know that you have no idea what is going to be in each of their best interests. I guess that’s how God has to deal with each of us, as well. I learned how to be a pastor during those two years in Wapato, the best and the worst of it. We took a mission team to Southeast Alaska for three weeks and saw many lives changed mostly those in our group. Amos was born August 6, 1977 and six weeks later we arrived at Fuller Theological Seminary in Pasadena, CA. How little did we know that we would have been followed by one of the most renowned Serial Killers in the history of American criminal annals.
PASADENA, CA, FALL OF 1977
Fuller Theological Seminary took great pride in considering itself the Princeton Theological Seminary of the West Coast. It wasn’t, except in expenses and a self-inflated set of its own California mystique. Having already received two advanced Theological degrees from truly world class international theologians, I was in no way intimidated when they paraded “super-star” Southern California Mega Church Pastors in front of us as if to say: “ this is what you could become, with our guidance and training.” Horse-pucky. Who would want to be chauffeured around in a luxury automobile to avoid having to drive yourself on the freeway system? You would be amazed how many of those mega-stars went down in flames of public disgrace and humiliation. Jesus calls us to a life of servant hood, not rock star status. I wrote scathing critiques to the professors, but not a single response from any of them. Their Assistants did all the reading of papers and the professors were too busy going out to lunch with the superstars and their Hollywood clientele. It was a valuable lesson to learn in idolatry both within and without the church. In Canada, you could enroll full time as a student and take as many classes as time allowed. At FTS, they nickel and dimed you out of every credit you took and after registering the first day, I had to go home and tell Kriss that all our money was practically gone and only God knew how we could survive the next 9 months. Pollution was at its worst in early September, the kids were not adapting well to their environment and Kriss began to develop a series of bouts with strep-throat that would plague her the rest of the year. And then Anthony Bono showed up on the streets of Pasadena.
Tuesday, April 12, 2011
10 Days in the Perfect Storm
University of Washington Medical Center, Seattle
I thought it was April Fools Day, but it was real. My body had been telling me for days that things weren't right. Somehow your body knows when you are at high risk. I had been telling my care providers that things seemed to be going backwards. Without absolute confirmation they were in a "wait and see" mood. From 1:30am to 4:30am I developed a severe case of para-influenza III. Normally this is a 24-hour flu bug that your immune system can tolerate and recover within 24 hours. But without much of an immune system, it driggered a domino-effect of four major, distinct medical crises. Graft vs. Host Disease reimmerged in my upper and lower intestinal tract. This teamed up with my CMV, which also appeared in my blood-stream. Influenza developed into a lung infection, verging on pneumonia. Oxygen saturation levels dropped to the point of having to start 24-hour oxygen at the hospital. I was admitted once again to the UW Medical Center after a steady and constant decline physically, emotionally, and spiritually. I had three doctors reveal to me after the fact that things might have spiraled out of control and consequences might have been dire. It was at this time that I wrote the blog that I hope didn't offend people about not quoting scriptures to me. I was just trying to focus all of my energy on trying to stabilize. I would welcome anything the Lord put on your heart to share with me. I appreciate all of the concern and cards. I am at a point where I have the energy to read them and will try to respond as I am able.
We are getting legal counsel with my brother's estate which is taking a huge load off and allows me to concentrate fully on getting healthy and putting all my energy into my recovery. It is uncertain how long I will have to stay at the UW Med Center until my gut is stable and the brochial problems are cleared up. I need to be off of oxygen. We are making progress on a couple of fronts, but are still needing improvement in other areas. We appreciate your support and prayers through this time so we can come home as soon as possible. Yesterday was exactly three months from the transplant but we may have to stay beyond the 100 days obviously. Kriss is in Walla Walla taking care of things and Hanna is here helping do what I need to have done. We are learning a lot about patience and perseverance. God is providing everything we need right now through all of you and a lot of prayers and support. Thank you so much for all the work on the house and many many things people are doing to make a recovery possible.
If I can't be in Walla Walla for Easter, I wil communicate a special Easter message to you one way or the other. To quote a famous Easter message from Anothy Campolo, "It may be Friday, but Sunday's a-comin'!" Thank you in advance for all your love and care.
I look forward to hearing from you. Robin
I thought it was April Fools Day, but it was real. My body had been telling me for days that things weren't right. Somehow your body knows when you are at high risk. I had been telling my care providers that things seemed to be going backwards. Without absolute confirmation they were in a "wait and see" mood. From 1:30am to 4:30am I developed a severe case of para-influenza III. Normally this is a 24-hour flu bug that your immune system can tolerate and recover within 24 hours. But without much of an immune system, it driggered a domino-effect of four major, distinct medical crises. Graft vs. Host Disease reimmerged in my upper and lower intestinal tract. This teamed up with my CMV, which also appeared in my blood-stream. Influenza developed into a lung infection, verging on pneumonia. Oxygen saturation levels dropped to the point of having to start 24-hour oxygen at the hospital. I was admitted once again to the UW Medical Center after a steady and constant decline physically, emotionally, and spiritually. I had three doctors reveal to me after the fact that things might have spiraled out of control and consequences might have been dire. It was at this time that I wrote the blog that I hope didn't offend people about not quoting scriptures to me. I was just trying to focus all of my energy on trying to stabilize. I would welcome anything the Lord put on your heart to share with me. I appreciate all of the concern and cards. I am at a point where I have the energy to read them and will try to respond as I am able.
We are getting legal counsel with my brother's estate which is taking a huge load off and allows me to concentrate fully on getting healthy and putting all my energy into my recovery. It is uncertain how long I will have to stay at the UW Med Center until my gut is stable and the brochial problems are cleared up. I need to be off of oxygen. We are making progress on a couple of fronts, but are still needing improvement in other areas. We appreciate your support and prayers through this time so we can come home as soon as possible. Yesterday was exactly three months from the transplant but we may have to stay beyond the 100 days obviously. Kriss is in Walla Walla taking care of things and Hanna is here helping do what I need to have done. We are learning a lot about patience and perseverance. God is providing everything we need right now through all of you and a lot of prayers and support. Thank you so much for all the work on the house and many many things people are doing to make a recovery possible.
If I can't be in Walla Walla for Easter, I wil communicate a special Easter message to you one way or the other. To quote a famous Easter message from Anothy Campolo, "It may be Friday, but Sunday's a-comin'!" Thank you in advance for all your love and care.
I look forward to hearing from you. Robin
Saturday, April 9, 2011
ONE STEP FORWARD AND TWO STEPS BACK
We are learning more and more about our bodies and the magnificent and delicate way God made us. Like – oxygen saturation – and how essential appropriate levels are to keep us going. This is Kriss writing as Robin is resting in a hospital bed at the University of Washington Medical Center as of Friday evening around 10 pm.
It has been a very eventful week. Last Friday late night through early Saturday morning Robin was hit very hard with vomiting and diarrhea. We went to the Cancer Center Triage for weekend assessment on Saturday mid-morning. Upon consulting with our primary doctor Robin received his first of three IV Prednisone infusions over the next three days. Then, as life would have it, I had my turn of violent GI issues on Sunday night. Monday Robin had to drive himself to the Cancer Center or cancel his appointments, which was not really an option. They took a nasal culture, which showed he had Para-influenza 3, but due to Robin’s compromised immune system he did not recover as I did. He has been suffering from an irritating cough and post-nasal drip for over three weeks. He has had a weekly chest x-ray to determine what is precipitating the cough, showing nothing conclusive. So, Robin is back on Prednisone. After daily blood draws he had more drug changes this week than ever. Then on Thursday, along with various other appointments, they did a chest CT; and on Friday he had an endoscopy & sigmoidoscopy. During and after these procedures was when his low oxygen absorption levels became apparent. One more big drug change came about, and this was rather overwhelming. He was taken off the twice daily home infusions of Ganciclovir and scheduled to come into the Cancer Center for twice daily infusions of Foscarnet with 2 hours of hydration infusion at home prior to the 8am dose and 4 hours of IV hydration before the 8pm dose. I was really wondering how we were going to get it all done, along with all of his meds at six different times a day (some with food, some on an empty stomach) and 4 blood sugar tests and insulin. We also had numerous appointments to keep. At this point a 12 hour nursing shift sounded pretty good. I could use a good nights sleep without worrying I was going to forget something Robin needed. Robin was getting so tired I had to wake him up to go to the next appt. or take the next meds. And walking to the car and through the Cancer Center really wore him out. When we went in for his first infusion of Foscarnet on Friday at 5:30pm the nurse was concerned about his shortness of breath and, of course, the oxygen levels. She didn’t want to start the drug until the PA on duty saw him in person. It took over an hour for her to get to us, but she was great. She was able to track down our primary Dr. and he said two words: Get going! Since he was on oxygen and the drug infusion he was transferred to the hospital by ambulance. It was a relief to both of us to know he was getting the attention he needs along with the oxygen. Now we found out that the chest CT revealed some bi-lateral infiltration of his lungs. They took a sputum culture and found evidence of a bacterial infection so he is on a three day high dose antibiotic.
So, for the past two weeks Robin has been donning a disposable respiratory mask at the Cancer Center. Now it is my turn. Anyone entering his room at the hospital must put on a gown, gloves and mask, and keep them on the entire time there. At least now Robin can get the rest he needs and his meds and treatments without having to go out in the weather and walk the halls of the SCCA. This is a bit of a set-back and we will surely be here in Seattle past our 100 day mark of April 19, but we feel confident in the medical care and mostly in God’s provision. Thank you all for your continued love and support throughout this medical adventure.
It has been a very eventful week. Last Friday late night through early Saturday morning Robin was hit very hard with vomiting and diarrhea. We went to the Cancer Center Triage for weekend assessment on Saturday mid-morning. Upon consulting with our primary doctor Robin received his first of three IV Prednisone infusions over the next three days. Then, as life would have it, I had my turn of violent GI issues on Sunday night. Monday Robin had to drive himself to the Cancer Center or cancel his appointments, which was not really an option. They took a nasal culture, which showed he had Para-influenza 3, but due to Robin’s compromised immune system he did not recover as I did. He has been suffering from an irritating cough and post-nasal drip for over three weeks. He has had a weekly chest x-ray to determine what is precipitating the cough, showing nothing conclusive. So, Robin is back on Prednisone. After daily blood draws he had more drug changes this week than ever. Then on Thursday, along with various other appointments, they did a chest CT; and on Friday he had an endoscopy & sigmoidoscopy. During and after these procedures was when his low oxygen absorption levels became apparent. One more big drug change came about, and this was rather overwhelming. He was taken off the twice daily home infusions of Ganciclovir and scheduled to come into the Cancer Center for twice daily infusions of Foscarnet with 2 hours of hydration infusion at home prior to the 8am dose and 4 hours of IV hydration before the 8pm dose. I was really wondering how we were going to get it all done, along with all of his meds at six different times a day (some with food, some on an empty stomach) and 4 blood sugar tests and insulin. We also had numerous appointments to keep. At this point a 12 hour nursing shift sounded pretty good. I could use a good nights sleep without worrying I was going to forget something Robin needed. Robin was getting so tired I had to wake him up to go to the next appt. or take the next meds. And walking to the car and through the Cancer Center really wore him out. When we went in for his first infusion of Foscarnet on Friday at 5:30pm the nurse was concerned about his shortness of breath and, of course, the oxygen levels. She didn’t want to start the drug until the PA on duty saw him in person. It took over an hour for her to get to us, but she was great. She was able to track down our primary Dr. and he said two words: Get going! Since he was on oxygen and the drug infusion he was transferred to the hospital by ambulance. It was a relief to both of us to know he was getting the attention he needs along with the oxygen. Now we found out that the chest CT revealed some bi-lateral infiltration of his lungs. They took a sputum culture and found evidence of a bacterial infection so he is on a three day high dose antibiotic.
So, for the past two weeks Robin has been donning a disposable respiratory mask at the Cancer Center. Now it is my turn. Anyone entering his room at the hospital must put on a gown, gloves and mask, and keep them on the entire time there. At least now Robin can get the rest he needs and his meds and treatments without having to go out in the weather and walk the halls of the SCCA. This is a bit of a set-back and we will surely be here in Seattle past our 100 day mark of April 19, but we feel confident in the medical care and mostly in God’s provision. Thank you all for your continued love and support throughout this medical adventure.
Friday, April 1, 2011
TRANSPLANT SHUTES AND LADDERS!
SEATTLE,WA,4/1/2011 CLOUDY,RAIN,45DEGREES,
When our children were young one of their favorite games was SHUTES AND LADDERS. It was a simple board game where everyone started at the bottom of the board and rolled a die and moved that number of spaces and the winner got to the top of the board first. However, along the way were spaces with ladders attached that you climbed one or two levels as a bonus, but there were also shutes or slide spaces which caused you to go backwards one or two levels. Looking back, it was a pretty valuable game in that it taught some fairly sophisticated life lessons. Don't get too cocky when you are winning, because you could end up behind on just your next turn. Don't get too discouraged if you are behind everyone else, because ladders exist and you could vault over the top of everyone else and end up winning. Win and lose as graciously as possible. Enjoy the time with the people you play with, especially if your parents play with you.
This week has been my own version of Stem Cell Transplant SHUTES AND LADDERS. We have landed on some ladder spaces and vaulted forward. The final results of the bone marrow biopsy were as good as we could have possibly hoped for. Hanna's stem cells not only make up 100% of my bone marrow stem cells, but they have eliminated all the abnormal chromosomal Myleo-Dysplastic cells. For now I am free of that pre-leukemic condition. But we have landed on several chutes and taken a free-fall backwards, as well. My (CMV) Cytomegalovirus has returned. It originally teamed with Graft vs Host Disease to land me in the U of W Medical Center two days after trasplant. I spent 15 days battling a severe intestinal tract disruption, but this time it is showing up in my blood stream. Treatment consists of putting me back on IV infusions twice a day of Gansciclovir. In addition to CMV reimergence, I have a Herpes Viral outbreak in the roof of my mouth that has grown from the size of a pencil eraser to a half-dollar in just a few days. The meds I am taking for that have stopped its growth, but drinking and eating are very painful. It's like you were too greedy and took a big bite of hot pizza and burned the roof of your mouth. We all know what that feels like and how long it takes to heal. I'm making progress on the blood sugar front and require less insulin every week. All of these problems are typical of post Prednisone treatment and they anticipate them during the last three weeks prior to discharge. I had hoped that by this time, I would be having clearer sailing and an increase in energy and vitality. Unfortunately, the opposite is true and I have to force myself to take walks and eat much of anything. We see our PA again after a blood draw on Monday, so she can keep a close eye on these new developments. I hope and pray that we can get all of these new complications under control before our scheduled discharge date of April 19th. We would covet your prayers in that regard.
I suspect that there are other outside sources of stress that are contributing to my medical free-fall. Watching my brother Tom slowly lose his battle for life for six weeks in Harborview's Neuro-Intensive Care Unit is impacting me in some strange ways. Having made the decision to remove him from all life support and walking with him through the Valley of the Shadow of Death for 5 hours, I am feeling some deep feelings of survivor guilt. It is a new experience for me to have to cope with the question of why he died and not me. It is a common struggle for survivors of war and massive loss of life in accidents. Having daily reminders of his legal and financial affairs keeps that grief wound open and bleeding. It is a new path I never anticipated taking and I don't know how God is going to bring healing to this wound. My body is telling me that I am going downhill at this time. It is disappointing not to have each day get better and better. I don't know how far this shute I'm on will descend, but wherever we land, we will regroup and with God's help and all your prayers, we will persevere. Sois misericordieux envers moi, Seigneur! Je suis epuise et surmonte par mes douleurs. Ceux qui m'entourent ne savent comment me consoler. Toi and toi seule connaisses les fardeaux qui m'ecrasent. La vie deroule peniblement et les nuits se moquent de moi. Revele-toi comme l'aube, et delivre-moi par ta main toute puissante! Some emotions can only be expressed in a language with more subtle emotional depth. (Translation) Be merciful to me, O Lord! I am exhausted and overcome by my sufferings. Those who surround me don't know how to console me. You and you alone know the burdens that threaten to crush me. Life rolls by painfully and nights mock me. Reveal yourself like the dawn, and deliver me by your all powerful hand. Some emotions seem easier to express in another language that lends itself to more subtle emotional nuances. My translation cannot truly reveal those nuances, but it will give you a good idea of my own version of a Psalm of David crying out to God for God's intervention in his life. It is the same kind of desperation that led Jesus to cry out, "My God, My God, why have you forsaken me?" Maybe we all have to experience some moments of deep sense of isolation to recognize the miracle of God's presence that we sometimes take for granted. Keep us in your prayers, we are approaching a critical period in this transplant process and it feels like life itself is hanging in the balance. Robin
When our children were young one of their favorite games was SHUTES AND LADDERS. It was a simple board game where everyone started at the bottom of the board and rolled a die and moved that number of spaces and the winner got to the top of the board first. However, along the way were spaces with ladders attached that you climbed one or two levels as a bonus, but there were also shutes or slide spaces which caused you to go backwards one or two levels. Looking back, it was a pretty valuable game in that it taught some fairly sophisticated life lessons. Don't get too cocky when you are winning, because you could end up behind on just your next turn. Don't get too discouraged if you are behind everyone else, because ladders exist and you could vault over the top of everyone else and end up winning. Win and lose as graciously as possible. Enjoy the time with the people you play with, especially if your parents play with you.
This week has been my own version of Stem Cell Transplant SHUTES AND LADDERS. We have landed on some ladder spaces and vaulted forward. The final results of the bone marrow biopsy were as good as we could have possibly hoped for. Hanna's stem cells not only make up 100% of my bone marrow stem cells, but they have eliminated all the abnormal chromosomal Myleo-Dysplastic cells. For now I am free of that pre-leukemic condition. But we have landed on several chutes and taken a free-fall backwards, as well. My (CMV) Cytomegalovirus has returned. It originally teamed with Graft vs Host Disease to land me in the U of W Medical Center two days after trasplant. I spent 15 days battling a severe intestinal tract disruption, but this time it is showing up in my blood stream. Treatment consists of putting me back on IV infusions twice a day of Gansciclovir. In addition to CMV reimergence, I have a Herpes Viral outbreak in the roof of my mouth that has grown from the size of a pencil eraser to a half-dollar in just a few days. The meds I am taking for that have stopped its growth, but drinking and eating are very painful. It's like you were too greedy and took a big bite of hot pizza and burned the roof of your mouth. We all know what that feels like and how long it takes to heal. I'm making progress on the blood sugar front and require less insulin every week. All of these problems are typical of post Prednisone treatment and they anticipate them during the last three weeks prior to discharge. I had hoped that by this time, I would be having clearer sailing and an increase in energy and vitality. Unfortunately, the opposite is true and I have to force myself to take walks and eat much of anything. We see our PA again after a blood draw on Monday, so she can keep a close eye on these new developments. I hope and pray that we can get all of these new complications under control before our scheduled discharge date of April 19th. We would covet your prayers in that regard.
I suspect that there are other outside sources of stress that are contributing to my medical free-fall. Watching my brother Tom slowly lose his battle for life for six weeks in Harborview's Neuro-Intensive Care Unit is impacting me in some strange ways. Having made the decision to remove him from all life support and walking with him through the Valley of the Shadow of Death for 5 hours, I am feeling some deep feelings of survivor guilt. It is a new experience for me to have to cope with the question of why he died and not me. It is a common struggle for survivors of war and massive loss of life in accidents. Having daily reminders of his legal and financial affairs keeps that grief wound open and bleeding. It is a new path I never anticipated taking and I don't know how God is going to bring healing to this wound. My body is telling me that I am going downhill at this time. It is disappointing not to have each day get better and better. I don't know how far this shute I'm on will descend, but wherever we land, we will regroup and with God's help and all your prayers, we will persevere. Sois misericordieux envers moi, Seigneur! Je suis epuise et surmonte par mes douleurs. Ceux qui m'entourent ne savent comment me consoler. Toi and toi seule connaisses les fardeaux qui m'ecrasent. La vie deroule peniblement et les nuits se moquent de moi. Revele-toi comme l'aube, et delivre-moi par ta main toute puissante! Some emotions can only be expressed in a language with more subtle emotional depth. (Translation) Be merciful to me, O Lord! I am exhausted and overcome by my sufferings. Those who surround me don't know how to console me. You and you alone know the burdens that threaten to crush me. Life rolls by painfully and nights mock me. Reveal yourself like the dawn, and deliver me by your all powerful hand. Some emotions seem easier to express in another language that lends itself to more subtle emotional nuances. My translation cannot truly reveal those nuances, but it will give you a good idea of my own version of a Psalm of David crying out to God for God's intervention in his life. It is the same kind of desperation that led Jesus to cry out, "My God, My God, why have you forsaken me?" Maybe we all have to experience some moments of deep sense of isolation to recognize the miracle of God's presence that we sometimes take for granted. Keep us in your prayers, we are approaching a critical period in this transplant process and it feels like life itself is hanging in the balance. Robin
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