Please say a little prayer for our dad as he begins chemotherapy this morning at 10am. He seems nervous, but resolved for this next phase.
We learned last week that our dad will participate on the Study Arm of the E1505 research study. This means, in addition to his 4 rounds of chemotherapy, he will also receive the drug Bevacizumab, which is currently being researched and tested with our dad's cancer. This portion of his post-surgical treatment will continue on past the 4 rounds of chemo and will be infused once every three weeks for up to a year.
Each "round" of chemotherapy will follow a three week cycle. Day 1 and day 8 are infusion days. He has the third week "off. Today, just prior to his infusion, we will receive a chemo tutorial by Dr. Treisman's oncology nurses. We have heard the nurses are wonderful.
We will try our best to keep our dad's spirits up as he begins this next phase.
Tuesday, May 5, 2009
Monday, May 4, 2009
Sunday, April 26, 2009 Preparing for Chemotherapy
We have had a fairly peaceful series of weeks, in preparation for the next step--chemotherapy. Our dad is still in pain, but he is managing it quite bravely and without significant complaint. It seems he is trying to physically and mentally adjust to his newly changed body and his outlook on his life, too.
The physical adjustment, in addition to the pain from the incision, seems to be ongoing for our dad. He has recently made attempts to describe the way his body now feels, which is difficult for him to describe in a way that makes it possible for one to imagine. He has said that when he breathes through his nose, he can feel his breath, or the air, passing through his body into the lower part of his lungs. He has also expressed a feeling on emptyness in his chest, a vacancy where the upper lobe once was. He definitely, in his attempts to describe his breathing, makes attempts to illustrate the newness and the absence of what once was.
Chemotherapy is likely to begin sometime this week, we think. We have had a second consult with Dr. Treisman regarding the E1505 clinical trial and have agreed to participate in the study. Our dad will receive a standard post-surgery chemotherapy course of four rounds of a "chemo recipe," taking place twice every three weeks, and, if randomized to a specific group in the study, will receive an additional non-chemo drug for up to a year. We will not know whether our dad will receive this additional drug until after he is "enrolled in the study."
Our dad underwent a series of tests on Friday (4.24.09) for study enrollment. He needed to have a series of labs done for baseline bloodwork, as well as a chest xray and an ECG. Once the results of the bloodwork are received, it is our understanding that our dad will be enrolled in the study and will find out whether his post-surgery treatment will extend beyond chemo for the additional non-chemo drug being currently tested.
Over the course of this coming week, we should know which portion of the research study our dad will be assigned, and will have our start date on the calendar. Our dad will also have his second post-surgical visit with Dr. Krishnan. We hope our dad continues to look forward positively as he regains his strength in body and mind for the next difficult steps ahead.
The physical adjustment, in addition to the pain from the incision, seems to be ongoing for our dad. He has recently made attempts to describe the way his body now feels, which is difficult for him to describe in a way that makes it possible for one to imagine. He has said that when he breathes through his nose, he can feel his breath, or the air, passing through his body into the lower part of his lungs. He has also expressed a feeling on emptyness in his chest, a vacancy where the upper lobe once was. He definitely, in his attempts to describe his breathing, makes attempts to illustrate the newness and the absence of what once was.
Chemotherapy is likely to begin sometime this week, we think. We have had a second consult with Dr. Treisman regarding the E1505 clinical trial and have agreed to participate in the study. Our dad will receive a standard post-surgery chemotherapy course of four rounds of a "chemo recipe," taking place twice every three weeks, and, if randomized to a specific group in the study, will receive an additional non-chemo drug for up to a year. We will not know whether our dad will receive this additional drug until after he is "enrolled in the study."
Our dad underwent a series of tests on Friday (4.24.09) for study enrollment. He needed to have a series of labs done for baseline bloodwork, as well as a chest xray and an ECG. Once the results of the bloodwork are received, it is our understanding that our dad will be enrolled in the study and will find out whether his post-surgery treatment will extend beyond chemo for the additional non-chemo drug being currently tested.
Over the course of this coming week, we should know which portion of the research study our dad will be assigned, and will have our start date on the calendar. Our dad will also have his second post-surgical visit with Dr. Krishnan. We hope our dad continues to look forward positively as he regains his strength in body and mind for the next difficult steps ahead.
Tuesday, March 31, 2009
Dr. Krishnan and Dr. Treisman visits
Our dad had his first post surgery visit with Dr. Krishnan today. Prior to his appointment, our dad has a Chest Xray, and then proceeeded to his scheduled visit. He met with Dr. Krishnan's Nurse Practitioner, Kristin, first to briefly discuss how he has been doing since his discharge. Kristin is warm and positive with our dad. She remarks that our dad looks good and reminds him to continue to challenge and strengthen himself with activity, including his physical therapy exercises. Kristin then removed our dad's sutures from the chest tube incision.
Dr. Krishnan enters soon after and launches into his perspective on our dad's Chest Xray. He comments that it has improved a lot, but is not perfect yet. Dr. Krishnan explains that our dad's lower left lobe had a significant amount of scar tissue from his heart surgery in 2000 and as a result, he likened the view of his lower lobe to a "tight knot." Our dad's continual and frequent exercises with the incentives spirometer and flutter valve, along with increased activity--walking, deep breathing, coughing, etc.--ought to help 'loosen the knot,' open up and clear that lobe for optimal function. Dr. Krishnan remarks that our dad's oxygenation seems quite good. He removes the oxygen and wants to 'test' his level without oxygen during activity. He sends our dad and Kristin for a walking test. Our dad's O2 remains in the mid-high 90s. As a result, Dr. Krishnan tells our dad he may use the oxygen "as needed" for the interim until he sees Dr. Nadeem on Friday for further instructions. This, definitely, was a positive development. Our dad was visibly pleased.
Dr. Krishnan also offered us the opportunity to see images of our dad's lung, tissue, ribs, and, of course, tumor, from photos taken post surgery. Our dad seemed very interested in seeing the photos. It was amazing to listen to Dr. Krishnan explain the contents of each slide and show us the tumor from different imaging perspectives. Dr. Krishnan obviously loves his profession. Fascinating to me was his eagerness to share and articulate as multidimensional a picture as possible for our dad his disease. The opportunity to see his tumor gave our dad and us an incredibly concrete visual of this insidious enemy and how it had invaded our dad.
Dr. Krishnan and Kristin wish our dad further strength in his recovery and schedule another visit in one month for another Chest Xray followup.
The next visit, with the oncologist, Dr. Treisman is scheduled for 3:30, though as we wait for our dad to be called, we learn that scheduled appointments rarely follow "schedule." Our dad, already nervous for this appointment, becomes increasingly anxious and frustrated that we are not seen. Finally, over an hour past his scheduled time, we are seated in a room. Dr. Treisman comes in and begins to talk about the chemotherapy recipes that are used with our dad's nonsmall cell lung cancer, naming each drug and talking about the combination "recipes" that can be chosen. It is overwhelming for us, as patients, to listen to these foreign names and follow as Dr. Treisman speaks of combining one drug with another, and offering perspectives on the merits of choosing drug B over drug C. He explains that this portion of chemotherapy followup is recommended for patients whose tumors have been completely resected as an added measure to prevent recurrence. He suggests that the research indicates more favorable outcomes for patients who undergo a short course of chemotherapy post surgery over those who do not have chemotherapy. It is unclear that precise difference, but it is clear that chemotherapy is strongly recommended. This "recipe," as it is called, will be followed in a course of 4 infusions, once every three weeks, beginning in approximately 3 weeks.
Dr. Treisman continues by adding that a national Reseach Evaluation Study "E1505" is currently underway and recommends to our dad to add this chemotherapy element to his course. This added component would extend his chemotherapy, as it would include a specific number of infusions for the next year. Dr. Treisman explains that he really likes this drug and believes it is tolerated well by patients. He suggests that our dad would benefit from participating in the study. He sends us home with a 28 page consent form packet that discusses the treatment drugs, their potential side effects, and other basic information to consider before proceeding the chemotherapy course.
Our dad seems emotionally drained by the day's end. Despite knowing that chemotherapy was an almost assured inevitability, he still remarks that he had "hoped he would not have to go through chemo." Chemotherapy seems ultimately scarier and more daunting than the excruciating pain of even his surgery. He is quiet and accepting during his appointment with Dr. Treisman, but (to me) seems upset over this next step. Dr. Treisman's professional style and personality are markedly different than Dr. Krishnan's. While we have the reminder of Dr. Treisman from our dad's sister, Rose's, experience (and her deep affection and adoration of him), he is nevertheless new to us. This relationship is new, scary, and will take time to develop, we agree. Everyone we talk to seems to love Dr. Treisman and think he is fabulous. We trust these testimonials. As we look ahead, we must begin to put our faith in the process and help our dad see this future with optimism and light.
Dr. Krishnan enters soon after and launches into his perspective on our dad's Chest Xray. He comments that it has improved a lot, but is not perfect yet. Dr. Krishnan explains that our dad's lower left lobe had a significant amount of scar tissue from his heart surgery in 2000 and as a result, he likened the view of his lower lobe to a "tight knot." Our dad's continual and frequent exercises with the incentives spirometer and flutter valve, along with increased activity--walking, deep breathing, coughing, etc.--ought to help 'loosen the knot,' open up and clear that lobe for optimal function. Dr. Krishnan remarks that our dad's oxygenation seems quite good. He removes the oxygen and wants to 'test' his level without oxygen during activity. He sends our dad and Kristin for a walking test. Our dad's O2 remains in the mid-high 90s. As a result, Dr. Krishnan tells our dad he may use the oxygen "as needed" for the interim until he sees Dr. Nadeem on Friday for further instructions. This, definitely, was a positive development. Our dad was visibly pleased.
Dr. Krishnan also offered us the opportunity to see images of our dad's lung, tissue, ribs, and, of course, tumor, from photos taken post surgery. Our dad seemed very interested in seeing the photos. It was amazing to listen to Dr. Krishnan explain the contents of each slide and show us the tumor from different imaging perspectives. Dr. Krishnan obviously loves his profession. Fascinating to me was his eagerness to share and articulate as multidimensional a picture as possible for our dad his disease. The opportunity to see his tumor gave our dad and us an incredibly concrete visual of this insidious enemy and how it had invaded our dad.
Dr. Krishnan and Kristin wish our dad further strength in his recovery and schedule another visit in one month for another Chest Xray followup.
The next visit, with the oncologist, Dr. Treisman is scheduled for 3:30, though as we wait for our dad to be called, we learn that scheduled appointments rarely follow "schedule." Our dad, already nervous for this appointment, becomes increasingly anxious and frustrated that we are not seen. Finally, over an hour past his scheduled time, we are seated in a room. Dr. Treisman comes in and begins to talk about the chemotherapy recipes that are used with our dad's nonsmall cell lung cancer, naming each drug and talking about the combination "recipes" that can be chosen. It is overwhelming for us, as patients, to listen to these foreign names and follow as Dr. Treisman speaks of combining one drug with another, and offering perspectives on the merits of choosing drug B over drug C. He explains that this portion of chemotherapy followup is recommended for patients whose tumors have been completely resected as an added measure to prevent recurrence. He suggests that the research indicates more favorable outcomes for patients who undergo a short course of chemotherapy post surgery over those who do not have chemotherapy. It is unclear that precise difference, but it is clear that chemotherapy is strongly recommended. This "recipe," as it is called, will be followed in a course of 4 infusions, once every three weeks, beginning in approximately 3 weeks.
Dr. Treisman continues by adding that a national Reseach Evaluation Study "E1505" is currently underway and recommends to our dad to add this chemotherapy element to his course. This added component would extend his chemotherapy, as it would include a specific number of infusions for the next year. Dr. Treisman explains that he really likes this drug and believes it is tolerated well by patients. He suggests that our dad would benefit from participating in the study. He sends us home with a 28 page consent form packet that discusses the treatment drugs, their potential side effects, and other basic information to consider before proceeding the chemotherapy course.
Our dad seems emotionally drained by the day's end. Despite knowing that chemotherapy was an almost assured inevitability, he still remarks that he had "hoped he would not have to go through chemo." Chemotherapy seems ultimately scarier and more daunting than the excruciating pain of even his surgery. He is quiet and accepting during his appointment with Dr. Treisman, but (to me) seems upset over this next step. Dr. Treisman's professional style and personality are markedly different than Dr. Krishnan's. While we have the reminder of Dr. Treisman from our dad's sister, Rose's, experience (and her deep affection and adoration of him), he is nevertheless new to us. This relationship is new, scary, and will take time to develop, we agree. Everyone we talk to seems to love Dr. Treisman and think he is fabulous. We trust these testimonials. As we look ahead, we must begin to put our faith in the process and help our dad see this future with optimism and light.
Sunday, March 29, 2009
Preparing for Home
Well, I suppose I never realized how truly out of touch with time I have been until it dawned on me a couple of days ago that Easter is not next weekend. I am completely screwed up with time, it seems, and have been seriously operating under the assumption that Easter was sooner than its actual date on the calendar. And no one was kind enough to correct me either. Oops. So with Easter two weeks away, we will likely spend the next two weeks continuing to help our dad recover and regain strength, in preparation for chemotherapy that will presumably begin shortly after our Easter holiday.
This week has been a good one for our dad. He decided to spend the week with Gina, to continue his course with the visiting nurse and physical therapist, and to be surrounded by people and activity throughout each day. It is clear to us he feels safer when surrounded by others throughout the day. The days continued to be positive times for our dad. He seemed to enjoy his time with Gina and her little ones. His kinship and connection with Gianna seemed to grow and be a mutually adorable experience. Evenings still remained a struggle. Our dad experienced pain most intensely and palpably at night. Since last Tuesday, his evening "bedtime" routine began with one Advil PM and a prescribed pain med to help get him to sleep; though he still had trouble sleeping for an extended period and would inevitably wake in the middle of the night for the additional Advil PM to help carry him through the evening hours. His body now appears regulated to a 3 hour sleep cycle. He remains troubled to find a comfortable position in which to sleep and is restless. Gina wonders if our dad is generally restless, as she hears him moaning or making plaintive comments in Italian during the night. She wonders this especially because when she checks on him--worried for his restlessness--he is actually sleeping.
By Thursday, our dad had begun to spend daytime hours without dependence on his walker, a major step in the right direction. He is showering every day and seems to have a witty sense of humor, Gina reports. She says he is "hamming it up" with the visiting nurse and physical therapist and is cracking jokes, making hilarious and sarcastic one-liners with Gina as they hang out together. Carmelo visits on Thursday with his son Vincent to watch NCAA basketball. They spend the entire day and into the late hours of the evening together. Our dad was delighted. An added surprise guest on Thursday for March Madness visiting was our dad's nephew, Matt Regan. The guys all hung out together and watched the games and seemed to enjoy a laid-back, relaxing time. Our dad was truly touched by Matt's visit and was so happy to see Carmelo again as well as his grandson, Vinnie.
Our mom and Tony arrived for the weekend on Saturday morning. Our dad, of course, was happy to be with them again too. Saturday seemed busy and bustling at Gina's house. Our dad seemed to be in pretty good spirits on Saturday. He looked great. We had a low-key day, played 'reindeer games' with the kids while our dad watched basketball, and enjoyed a fantastic family dinner, compliments of Mr. and Mrs. Aiello. It was a good day with good energy shared by everyone there.
Today our dad prepared for the journey home--back to Milwaukee. He has his followup appointment with Dr. Krishnan tomorrow afternoon and his oncology appointment with Dr. Treisman immediately after Dr. Krishnan. Our dad seemed nervous about going home...not for anything except the change, it seemed. My guess, too, is the impending appointments tomorrow have him unsettled as well, especially the oncologist. Gina told our dad that he is welcome to return to her house for the week if he would like and assured him that he should do whatever makes him feel most comfortable. It is apparent, to all of us, that he does quite well and is good for his spirits when he has people around him throughout the day. Both he and our mom seem to be concerned about imposing too much on any of us, though. They are assured there is no imposition.
He is now home safely. Our mom seems glad for it and is, no doubt, looking forward to their physical closeness...saying goodnight at bedtime and greeting him with a kiss in the morning. She seems to miss not taking care of him herself. It is obvious they have missed each other. While there is some natural trepidation from both of them for this homecoming, we all hope his first night back home is restful and comfortable. Equally important, we hope he feels secure and proud of how he has evolved and strengthened these two weeks post-surgery, especially as he anticipates his big appointments tomorrow. His belief in himself is both essential and critical, and seems (true to him) the most difficult hurdle to overcome.
This week has been a good one for our dad. He decided to spend the week with Gina, to continue his course with the visiting nurse and physical therapist, and to be surrounded by people and activity throughout each day. It is clear to us he feels safer when surrounded by others throughout the day. The days continued to be positive times for our dad. He seemed to enjoy his time with Gina and her little ones. His kinship and connection with Gianna seemed to grow and be a mutually adorable experience. Evenings still remained a struggle. Our dad experienced pain most intensely and palpably at night. Since last Tuesday, his evening "bedtime" routine began with one Advil PM and a prescribed pain med to help get him to sleep; though he still had trouble sleeping for an extended period and would inevitably wake in the middle of the night for the additional Advil PM to help carry him through the evening hours. His body now appears regulated to a 3 hour sleep cycle. He remains troubled to find a comfortable position in which to sleep and is restless. Gina wonders if our dad is generally restless, as she hears him moaning or making plaintive comments in Italian during the night. She wonders this especially because when she checks on him--worried for his restlessness--he is actually sleeping.
By Thursday, our dad had begun to spend daytime hours without dependence on his walker, a major step in the right direction. He is showering every day and seems to have a witty sense of humor, Gina reports. She says he is "hamming it up" with the visiting nurse and physical therapist and is cracking jokes, making hilarious and sarcastic one-liners with Gina as they hang out together. Carmelo visits on Thursday with his son Vincent to watch NCAA basketball. They spend the entire day and into the late hours of the evening together. Our dad was delighted. An added surprise guest on Thursday for March Madness visiting was our dad's nephew, Matt Regan. The guys all hung out together and watched the games and seemed to enjoy a laid-back, relaxing time. Our dad was truly touched by Matt's visit and was so happy to see Carmelo again as well as his grandson, Vinnie.
Our mom and Tony arrived for the weekend on Saturday morning. Our dad, of course, was happy to be with them again too. Saturday seemed busy and bustling at Gina's house. Our dad seemed to be in pretty good spirits on Saturday. He looked great. We had a low-key day, played 'reindeer games' with the kids while our dad watched basketball, and enjoyed a fantastic family dinner, compliments of Mr. and Mrs. Aiello. It was a good day with good energy shared by everyone there.
Today our dad prepared for the journey home--back to Milwaukee. He has his followup appointment with Dr. Krishnan tomorrow afternoon and his oncology appointment with Dr. Treisman immediately after Dr. Krishnan. Our dad seemed nervous about going home...not for anything except the change, it seemed. My guess, too, is the impending appointments tomorrow have him unsettled as well, especially the oncologist. Gina told our dad that he is welcome to return to her house for the week if he would like and assured him that he should do whatever makes him feel most comfortable. It is apparent, to all of us, that he does quite well and is good for his spirits when he has people around him throughout the day. Both he and our mom seem to be concerned about imposing too much on any of us, though. They are assured there is no imposition.
He is now home safely. Our mom seems glad for it and is, no doubt, looking forward to their physical closeness...saying goodnight at bedtime and greeting him with a kiss in the morning. She seems to miss not taking care of him herself. It is obvious they have missed each other. While there is some natural trepidation from both of them for this homecoming, we all hope his first night back home is restful and comfortable. Equally important, we hope he feels secure and proud of how he has evolved and strengthened these two weeks post-surgery, especially as he anticipates his big appointments tomorrow. His belief in himself is both essential and critical, and seems (true to him) the most difficult hurdle to overcome.
Monday, March 23, 2009
Exactly One Month
Today marks one month after learning of our dad's tumor...a "large," rarely noncancerous mass in his upper left lobe. It is strange--still--to me that the night before this whole nightmare began, I did not sleep well and did not understand why. I remember tossing and turning that night before 'the news' and being awake while the whole house was asleep. When the 7am phone call came, I remember looking at the caller ID and wondering whether my mom was calling early to chastise me for not making a Sunday, "how is everyone?" pbone call to my parents' house. If only I could have been so lucky. Instead, I recall screaming--screaming, when my mom called with the news--hysterically asking her "why did you not call any of us during the night?!?" and not being able to stand while I tried to shower while sobbing. I wonder, with much pain in my heart, how our mom must have felt hearing the words from the ER doctors; and then, I cannot bear to imagine how she managed to bear the agony of repeating the words--four times--to each of us that day. True strength. Unimaginable.
I know I did not sleep well last night and believe it had a great deal to do with this one month marker. I had dreams that woke me in a start. I suspect none of us slept well, thinking of the reminder of last month's crude awakening. This month has gone by so quickly, and yet, so slowly, if that makes any sense. Our dad has been through the most intense and physically painful month of his existence. And we would each do anything for him to take this all away.
I heard from Gina that our dad, despite an active and happy day, did not sleep well Sunday night. She said when our mom and he parted with their tender kiss and loving goodbye, he saw tears in our dad's eyes. The two of them have this crazy connection--intense and fiesty, yet deeply committed. Gina said she could not handle our dad's stifled tears. I said I had to leave prior to seeing my mom weep in her goodbye. Gina again mentions how horribly she feels that our dad cannot sleep. Gina and I talk about how, even with a small, seemingly insignificant problem, sleeping can be difficult. We know, with our dad, the quiet of night must be agonizing. He is left alone with his thoughts and is tormented. Gina hears him sighing restlessly and in pain through the baby monitor. She does not know quite how to handle the pain. She wants him to sleep. She does not want to interrupt him by visiting his room. Yet, she does not want him to feel ignored. She just wants him to have rest. He remains restless until she, at last, distributes another pain pill. It was a difficult night, especially since he did well all day. The night, with its silence, seems to feed on the pain.
He is running out of pain meds and is getting frustrated. Gina called Dr. Krishnan's nurse today to ask them to reissue his pain meds. Kristin only offered one of the two for refill. Our dad felt noticeably upset when he learned his "round the clock, every 12 hour med" would not be refreshed. Gina, clinically, did not quite understand it either. Nor did any of us. It has not even been a week since he started these meds. "Too addictive," remarked NP Kristin. Yet, at the same time, Kristin informed Gina that our dad would feel a host of agonies, "numbness, dullness, pinching, prodding, and throbbing (to name a few) for weeks." But no more "biggie" pain meds. Gina expressed distraught for our dad. She said he was visibly annoyed, to say the least..."they never said it would feel this bad." We all feel miserable for him. He is moving; he is trying to be active, both physically, and while seated, with his Incentives Spirometer and his Flutter Valve. Yet his pain remains. Bone, cartilage, muscle, organ--all removed--just over a week ago. Pain. Real pain. Why can we not modify it a bit longer?
I keep thinking about last month--February 23rd. The phone call that literally has changed my life, and that of our entire family. I feel selfish sometimes when I think of us....every family has its problems. Every person has his or her Big issues. But I cannot help but feel deeply for our dad. I still do not understand all of this. Every health problem he has seems to be a "biggie:" prostate cancer=aggressive surgical removal; heart problem=double bypass surgery, not angioplasty; and now lung cancer. Even writing the words seem to stop me in disbelief. Why? And why? Not just a lobectomy, but a thoracotomy too. Why?? Maybe our strong and ever faithful dad will not ask. I will. I do not have his strength.
This all has begun for us on the eve of Lent. As I drove to Milwaukee to see my dad this very day last month, I thought about this shock to our family and this unfathomable diagnosis for him, presenting itself on the Eve of Lent. I wondered, and still do, why our dad is a constant sacrifice and symbol of pain, for our family. I am weeping thinking about this amazing man and his unbelievable gift of himself to all of us. I understand, but at the same time, do not.
Our mom told me, when we talked last week about our dad and Lent, that Carmelo's wife Michelle poignantly said it is interesting that this is all happening--for our dad and all of us who are closest to him--during the Lenten season: the Holiest time our our year. The Holiest. He was diagnosed the day before Ash Wednesday. The meaning for Catholics could not be greater. I still cannot get the symbolism out of my mind. I find Michelle's perspective full of so much Wisdom--wisdom I never would have seen. I see it only as Sacrifice and Pain. But I am holding on to Michelle's wisdom. She is right. Somehow, in spite of this unbearable pain, I do believe in the meaning of all of this, during the most Holy time for our Faith. And I would like to believe that his hospital discharge on the day that symbolizes our "Irish Luck" would bode well for our dad somewhere, somehow.
Optimism. It makes so much sense. Yet it can be such a difficult concept. I know I am trying my best. I do believe in our dad. I do. I desperately want to feel confident that he has optimism too. 12 more days until Easter. Hope. Hope. Hope....
I know I did not sleep well last night and believe it had a great deal to do with this one month marker. I had dreams that woke me in a start. I suspect none of us slept well, thinking of the reminder of last month's crude awakening. This month has gone by so quickly, and yet, so slowly, if that makes any sense. Our dad has been through the most intense and physically painful month of his existence. And we would each do anything for him to take this all away.
I heard from Gina that our dad, despite an active and happy day, did not sleep well Sunday night. She said when our mom and he parted with their tender kiss and loving goodbye, he saw tears in our dad's eyes. The two of them have this crazy connection--intense and fiesty, yet deeply committed. Gina said she could not handle our dad's stifled tears. I said I had to leave prior to seeing my mom weep in her goodbye. Gina again mentions how horribly she feels that our dad cannot sleep. Gina and I talk about how, even with a small, seemingly insignificant problem, sleeping can be difficult. We know, with our dad, the quiet of night must be agonizing. He is left alone with his thoughts and is tormented. Gina hears him sighing restlessly and in pain through the baby monitor. She does not know quite how to handle the pain. She wants him to sleep. She does not want to interrupt him by visiting his room. Yet, she does not want him to feel ignored. She just wants him to have rest. He remains restless until she, at last, distributes another pain pill. It was a difficult night, especially since he did well all day. The night, with its silence, seems to feed on the pain.
He is running out of pain meds and is getting frustrated. Gina called Dr. Krishnan's nurse today to ask them to reissue his pain meds. Kristin only offered one of the two for refill. Our dad felt noticeably upset when he learned his "round the clock, every 12 hour med" would not be refreshed. Gina, clinically, did not quite understand it either. Nor did any of us. It has not even been a week since he started these meds. "Too addictive," remarked NP Kristin. Yet, at the same time, Kristin informed Gina that our dad would feel a host of agonies, "numbness, dullness, pinching, prodding, and throbbing (to name a few) for weeks." But no more "biggie" pain meds. Gina expressed distraught for our dad. She said he was visibly annoyed, to say the least..."they never said it would feel this bad." We all feel miserable for him. He is moving; he is trying to be active, both physically, and while seated, with his Incentives Spirometer and his Flutter Valve. Yet his pain remains. Bone, cartilage, muscle, organ--all removed--just over a week ago. Pain. Real pain. Why can we not modify it a bit longer?
I keep thinking about last month--February 23rd. The phone call that literally has changed my life, and that of our entire family. I feel selfish sometimes when I think of us....every family has its problems. Every person has his or her Big issues. But I cannot help but feel deeply for our dad. I still do not understand all of this. Every health problem he has seems to be a "biggie:" prostate cancer=aggressive surgical removal; heart problem=double bypass surgery, not angioplasty; and now lung cancer. Even writing the words seem to stop me in disbelief. Why? And why? Not just a lobectomy, but a thoracotomy too. Why?? Maybe our strong and ever faithful dad will not ask. I will. I do not have his strength.
This all has begun for us on the eve of Lent. As I drove to Milwaukee to see my dad this very day last month, I thought about this shock to our family and this unfathomable diagnosis for him, presenting itself on the Eve of Lent. I wondered, and still do, why our dad is a constant sacrifice and symbol of pain, for our family. I am weeping thinking about this amazing man and his unbelievable gift of himself to all of us. I understand, but at the same time, do not.
Our mom told me, when we talked last week about our dad and Lent, that Carmelo's wife Michelle poignantly said it is interesting that this is all happening--for our dad and all of us who are closest to him--during the Lenten season: the Holiest time our our year. The Holiest. He was diagnosed the day before Ash Wednesday. The meaning for Catholics could not be greater. I still cannot get the symbolism out of my mind. I find Michelle's perspective full of so much Wisdom--wisdom I never would have seen. I see it only as Sacrifice and Pain. But I am holding on to Michelle's wisdom. She is right. Somehow, in spite of this unbearable pain, I do believe in the meaning of all of this, during the most Holy time for our Faith. And I would like to believe that his hospital discharge on the day that symbolizes our "Irish Luck" would bode well for our dad somewhere, somehow.
Optimism. It makes so much sense. Yet it can be such a difficult concept. I know I am trying my best. I do believe in our dad. I do. I desperately want to feel confident that he has optimism too. 12 more days until Easter. Hope. Hope. Hope....
Sunday, March 22, 2009
March 22, 2009
Our dad has had a front seat for March Madness this weekend. It started off with a delightful and welcome visit from Carmelo on Friday, who drove down to watch basketball with our dad Friday afternoon. Our dad was very excited to see Carmelo. He got up and seemed to eagerly await his arrival, as he hadn't seen either of his sons since Monday evening. Carmelo arrived with a few favorite treats from home, including our dad's beloved Stella Doro breakfast treats (a no-no, given his erratic post-surgery blood sugar). The two of them watched Marquette play, and our dad seemed a bit more himself. As soon as Carmelo arrived, our dad made efforts to ensure Carmelo was properly fed: "Gina, fix your brother a sandwich" (no comment on Gina's response to that :)). He seemed so happy to have the company. Gina said it made his day.
The visiting nurse and physical therapist also visited on Friday. The visiting nurse again checked our dad's incision and reported it looked very good. Later, the physical therapist consulted with our dad. She helped him with additional range-of-motion exercises to perform while seated, and also worked with him on stair climbing. The physical therapist encouraged and complimented our dad on his strength, which she felt was impressive. She recommended he (and we) work with him on endurance and confidence. Follow-up visits with our dad are scheduled for Monday, March 23. Overall, both Friday visits were quite positive and reassuring for our dad.
We are so pleased to see our dad becoming increasingly more independent. It is definitely a gradual, careful, and tepid process, but he is doing it and he is proud of himself in his ever-so-modest way. On Saturday, our dad began to complain of a "pinching" like pain around his incision, which necessitated additional pain meds; but by Sunday, our dad reported with some pride that he had skipped his (every 4 hours as needed) pain pills. He also privately expressed pride in the fact that he had used the stairs both Saturday and Sunday to shower. After he woke up on Sunday, he--to everyone's surprise--got out of bed on his own and moved to the kitchen for breakfast. Throughout the day, he got up without assistance to take his repeated walks around the first floor circuit of Gina's house on his own, without prompting. Additionally, since we were fortunate to have a beautiful, sunny, warm spring weekend, our dad spent some time outside both Saturday and Sunday.
During a quiet, private moment on Sunday, I mentioned to our dad that he seemed a bit restless. He did not seem at ease, no matter where he sat--outside wasn't satisfying, nor was his preferred chair indoors. I asked him whether he was okay and if I could do anything for him. He, really, looked contemplative. In response, he said he was a bit tired-that he may need to rest for an hour or so-but, yes, he was okay. I asked him how he had been sleeping, as he seemed to look very good and much improved from Tuesday. He said the pinching pain was interrupting his sleep, but he was managing okay. We looked at each other for a brief time and I again asked if everything was okay. He did not seem to want to share a lot, though I felt by looking into his eyes that anything he would say would mean a great deal. He, simply said, "this is hard." I felt my eyes begin to well-up instantly, but tried (not very successfully) to contain my emotion. I responded by telling him, again, that he is going through so much, but is getting better every day--visibly better, and that we are all here to help him both with the recovery and rehabilitation and with being here for him to share his feelings. He told me he did not want me to start crying, (which, thankfully, I did not) though I could see the (contained) tears in his own eyes. I told him we are all so proud of how much strength he has shown thus far, that we are taking one day at a time, that he is cancer-free today, and that we are all with him...all of us. I told him we just do not want him to give up on himself. He quickly responded that he has not, is not and does not intend to give up. We ended with an embrace, kisses, and more I love yous.
Soon after, our dad had a very restful pre-dinner nap. Carl then prepared a fabulous and enjoyed-by-all steak dinner. Our dad ate very well. He seemed to sincerely relish the family time, in his unspoken way. The babies, Gianna and Ava, have a keen affection for him, which is adorable and so endearing. He seems to know it too, but never draws attention to their special connections. After dinner, Tony, Carl, Kevin and our dad spent time chatting politics and watching the disappointing end to the Marquette game :(. Tony reminded our dad of his placement in their basketball "picks" and complimented him on his predictions thus far. Life, for a moment, again felt "normal."
This week, we hope, will be more promising for our dad. It surely will be different, as our mom will be back in Milwaukee at least through Friday. No doubt they will miss each other tremendously. He does seem to feel safe and content with Gina, which is really a special dynamic to witness. We continue our prayers for positive days ahead and hope each new day offers the promise of greater strength, endurance, and confidence for our forever faithful, quietly emotional dad.
The visiting nurse and physical therapist also visited on Friday. The visiting nurse again checked our dad's incision and reported it looked very good. Later, the physical therapist consulted with our dad. She helped him with additional range-of-motion exercises to perform while seated, and also worked with him on stair climbing. The physical therapist encouraged and complimented our dad on his strength, which she felt was impressive. She recommended he (and we) work with him on endurance and confidence. Follow-up visits with our dad are scheduled for Monday, March 23. Overall, both Friday visits were quite positive and reassuring for our dad.
We are so pleased to see our dad becoming increasingly more independent. It is definitely a gradual, careful, and tepid process, but he is doing it and he is proud of himself in his ever-so-modest way. On Saturday, our dad began to complain of a "pinching" like pain around his incision, which necessitated additional pain meds; but by Sunday, our dad reported with some pride that he had skipped his (every 4 hours as needed) pain pills. He also privately expressed pride in the fact that he had used the stairs both Saturday and Sunday to shower. After he woke up on Sunday, he--to everyone's surprise--got out of bed on his own and moved to the kitchen for breakfast. Throughout the day, he got up without assistance to take his repeated walks around the first floor circuit of Gina's house on his own, without prompting. Additionally, since we were fortunate to have a beautiful, sunny, warm spring weekend, our dad spent some time outside both Saturday and Sunday.
During a quiet, private moment on Sunday, I mentioned to our dad that he seemed a bit restless. He did not seem at ease, no matter where he sat--outside wasn't satisfying, nor was his preferred chair indoors. I asked him whether he was okay and if I could do anything for him. He, really, looked contemplative. In response, he said he was a bit tired-that he may need to rest for an hour or so-but, yes, he was okay. I asked him how he had been sleeping, as he seemed to look very good and much improved from Tuesday. He said the pinching pain was interrupting his sleep, but he was managing okay. We looked at each other for a brief time and I again asked if everything was okay. He did not seem to want to share a lot, though I felt by looking into his eyes that anything he would say would mean a great deal. He, simply said, "this is hard." I felt my eyes begin to well-up instantly, but tried (not very successfully) to contain my emotion. I responded by telling him, again, that he is going through so much, but is getting better every day--visibly better, and that we are all here to help him both with the recovery and rehabilitation and with being here for him to share his feelings. He told me he did not want me to start crying, (which, thankfully, I did not) though I could see the (contained) tears in his own eyes. I told him we are all so proud of how much strength he has shown thus far, that we are taking one day at a time, that he is cancer-free today, and that we are all with him...all of us. I told him we just do not want him to give up on himself. He quickly responded that he has not, is not and does not intend to give up. We ended with an embrace, kisses, and more I love yous.
Soon after, our dad had a very restful pre-dinner nap. Carl then prepared a fabulous and enjoyed-by-all steak dinner. Our dad ate very well. He seemed to sincerely relish the family time, in his unspoken way. The babies, Gianna and Ava, have a keen affection for him, which is adorable and so endearing. He seems to know it too, but never draws attention to their special connections. After dinner, Tony, Carl, Kevin and our dad spent time chatting politics and watching the disappointing end to the Marquette game :(. Tony reminded our dad of his placement in their basketball "picks" and complimented him on his predictions thus far. Life, for a moment, again felt "normal."
This week, we hope, will be more promising for our dad. It surely will be different, as our mom will be back in Milwaukee at least through Friday. No doubt they will miss each other tremendously. He does seem to feel safe and content with Gina, which is really a special dynamic to witness. We continue our prayers for positive days ahead and hope each new day offers the promise of greater strength, endurance, and confidence for our forever faithful, quietly emotional dad.
Thursday, March 19, 2009
March 19, 2009 1 Week Post Surgery
Our dad is accustoming himself to his temporary new home with Gina, Carl, Carl, Sophia and Gianna. The kids seem so happy to have him at their house and he seems to feel safe with both our mom and Gina helping him. Despite the bustle of family life, our dad has managed to finally catch up on much needed sleep at Gina's house. While his first night home was a bit uneasy, he was able to sleep uninterrupted for 5 straight hours. Last night was a bit better. Gina actually had to wake him to give him his pain pill in the middle of the night instead of hearing him call out first.
While he still has post-surgery nausea, he has been eating well. On both mornings, he has enjoyed good breakfasts, eating a little bit more each day. He has made dinner requests too, which is amusing and delightful to us all.
For activity, he is continually exercising his lungs with the Incentives Spirometer and his "flutter puffer" and is sitting upright for the entire time he is awake. He walks his laps around Gina's first floor numerous times throughout the day and is using the cardiac rehabilitation exercises to increase his range of motion, especially on the left side. His visiting nurse stopped in yesterday and is scheduled to see him three times per week. She checked his incision and reinforced the post op orders from Dr. Krishnan. No one can stress enough the need for him to push himself to stay upright and active...deep breathing, deep breathing.
Our mom is being so helpful, both in encouraging and nurturing our dad, and in sharing time with their grandchildren. It seems she is enjoying plenty of laughs with the kids, especially always amusing Sophia. Our mom took 4 year old Sophia and 2 year old Gianna for a wagon walk around the block yesterday when our damsel-in-distress little Sophia stopped her--serious as-can-be--and in her high-pitched, desperate voice said, "I just cannot walk anymore Grandma. I just cannot stop thinking about (the love of her life) Noah." It was easy to imagine her, stopped in her tracks, with her hand on her forehead: ah, woe is me! Our mom just looked at Sophia, dumb-founded. She said she cracked-up the whole way home, after telling her she needed to get a move on and could think and dream about Noah all night when they got back home. Everyone had a great laugh when our mom reported that news back at home. Hilarious Sophia.
And Gina, well Gina gets an A+ for effort and caring for our dad. Of course, she is doing it with her own usual sense of humor too. Her clinical experience coupled with her daughterly love are honestly a perfect combination for our dad. He, without a doubt, needs both. It is clear he trusts her fully. We hope, with each new day, he becomes a bit stronger and a bit more confident so that he may begin to again trust himself as well.
While he still has post-surgery nausea, he has been eating well. On both mornings, he has enjoyed good breakfasts, eating a little bit more each day. He has made dinner requests too, which is amusing and delightful to us all.
For activity, he is continually exercising his lungs with the Incentives Spirometer and his "flutter puffer" and is sitting upright for the entire time he is awake. He walks his laps around Gina's first floor numerous times throughout the day and is using the cardiac rehabilitation exercises to increase his range of motion, especially on the left side. His visiting nurse stopped in yesterday and is scheduled to see him three times per week. She checked his incision and reinforced the post op orders from Dr. Krishnan. No one can stress enough the need for him to push himself to stay upright and active...deep breathing, deep breathing.
Our mom is being so helpful, both in encouraging and nurturing our dad, and in sharing time with their grandchildren. It seems she is enjoying plenty of laughs with the kids, especially always amusing Sophia. Our mom took 4 year old Sophia and 2 year old Gianna for a wagon walk around the block yesterday when our damsel-in-distress little Sophia stopped her--serious as-can-be--and in her high-pitched, desperate voice said, "I just cannot walk anymore Grandma. I just cannot stop thinking about (the love of her life) Noah." It was easy to imagine her, stopped in her tracks, with her hand on her forehead: ah, woe is me! Our mom just looked at Sophia, dumb-founded. She said she cracked-up the whole way home, after telling her she needed to get a move on and could think and dream about Noah all night when they got back home. Everyone had a great laugh when our mom reported that news back at home. Hilarious Sophia.
And Gina, well Gina gets an A+ for effort and caring for our dad. Of course, she is doing it with her own usual sense of humor too. Her clinical experience coupled with her daughterly love are honestly a perfect combination for our dad. He, without a doubt, needs both. It is clear he trusts her fully. We hope, with each new day, he becomes a bit stronger and a bit more confident so that he may begin to again trust himself as well.
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