Some people in this world are truly special. One of dad's doctors called shortly after my dad died, and he sent a letter saying the same thing. For four months (and even now) I thought constantly of the details of dad's cancer like it was a nefarious puzzle I was trying to solve. No matter how many different ways I considered it, I couldn't solve it. You would think that such a letter would come from an oncologist who was used to patients' families being haunted by the complicated choices of fighting cancer, but it actually came from one of his urologists. He is an exceptionally thoughtful doctor and a kind man, and my mother and I are grateful to him.
Dear Mrs. Shute and Family:
I am very sorry about the passing of your husband, James Shute. As you know, I did not get to know him for very long but I can tell you that he never seemed to complain despite his many medical problems. I know it was difficult for you to make decisions about him but I think it is important to let you know that I think everything that you did was correct. I do know that he was lucky to have such a loving family around him.
If there is anything that I or my office can do for you, please do not hesitate to let me know.
Showing posts with label Dad's cancer. Show all posts
Showing posts with label Dad's cancer. Show all posts
Friday, December 3, 2010
Thursday, November 18, 2010
Fade Away
This week is hard and sad and cruel. Dad is no longer responsive. We're waiting when there's nothing good to wait for and no more memories to make.
This is my childhood friend Wednesday's song with her band Pigeons, who lost her wonderful mother three years ago, Fade Away.
This is my childhood friend Wednesday's song with her band Pigeons, who lost her wonderful mother three years ago, Fade Away.
Monday, November 15, 2010
Dad's Time
We don't know how long dad has left but it's matter of days now. He's in pain and he's suffering. He's on a lot of pain medication, so he's incoherent or asleep most of the time. But we figure that's better than him being in more pain.
To say that he doesn't deserve this is a vast understatement. He's a wonderful and generous person. For the 25 to 26 years that I've known him he exercised and ate well and encouraged me to do the same. He practiced yoga, meditation, and tai chi. At 61-years-old, he looks ten years younger. He helped all his elderly neighbors. He gave money to people he didn't even know who needed his help. Even now in the hospital he worries about my mother and me, and even about the nurses. Some of the nurses have cried for him.
That's the easy stuff to explain. It's so hard to explain what he's done for me and for my mother. I can't speak to the entirety of my parents' relationship, but he is the kind of husband other people envy. He worked and he also cooked and ran the household chores. He was devoted and faithful to my mother for over 25 years. She tells the nurses and anyone who will listen that he never so much as raised his voice to her. The evidence of their mutual love is that my mother has been at his side every day all day throughout his illness, and she has never considered it one minute more than he deserves.
My dad has always put me before himself. Without him, I wouldn't be half the person I am. I read the books he gave me, learned the big words from him, and followed him around the house to talk to him. I would talk to him about everything, from the possibility of alien life forms to boys and kissing. He chaperoned my enrichment trips. He came to my field hockey games even though I wasn't very good and sometimes he had to see me get hurt. He came to my concerts even though I was worse at music. When he got kidney cancer the first time in 1999, his biggest concern was that I be able to finish college. I was blessed that I got to keep him for another 11 years and that he was able to walk me down the aisle and dance with me at my wedding. (I waited for 30 years to marry a man who I thought was as wonderful as my father.) He came to my graduations for kindergarten, eighth grade, high school, college, my masters program, law school, and to my bar swearing-in ceremony. When I told him I was pregnant he cried with happiness and kissed my hand because he couldn't reach up to kiss me from the hospital gurney. At a foot taller than me, he has called me "Shorty" my entire life.
Occasionally, I explain to someone that my dad is actually my stepfather, but I never once heard him call me his stepdaughter, and not once did he ever make me feel like anything other than his child completely. When I look around I see that not only do I have a wonderful father, but I have a better father than almost everyone else. The expression, "you can choose your friends, but you can't choose your family," doesn't apply to us. We chose each other to be family. I love my dad.
To say that he doesn't deserve this is a vast understatement. He's a wonderful and generous person. For the 25 to 26 years that I've known him he exercised and ate well and encouraged me to do the same. He practiced yoga, meditation, and tai chi. At 61-years-old, he looks ten years younger. He helped all his elderly neighbors. He gave money to people he didn't even know who needed his help. Even now in the hospital he worries about my mother and me, and even about the nurses. Some of the nurses have cried for him.
That's the easy stuff to explain. It's so hard to explain what he's done for me and for my mother. I can't speak to the entirety of my parents' relationship, but he is the kind of husband other people envy. He worked and he also cooked and ran the household chores. He was devoted and faithful to my mother for over 25 years. She tells the nurses and anyone who will listen that he never so much as raised his voice to her. The evidence of their mutual love is that my mother has been at his side every day all day throughout his illness, and she has never considered it one minute more than he deserves.
With mom in Charlottesville in 2007
With me on Cape Cod in 2004
Occasionally, I explain to someone that my dad is actually my stepfather, but I never once heard him call me his stepdaughter, and not once did he ever make me feel like anything other than his child completely. When I look around I see that not only do I have a wonderful father, but I have a better father than almost everyone else. The expression, "you can choose your friends, but you can't choose your family," doesn't apply to us. We chose each other to be family. I love my dad.
Sunday, November 14, 2010
Dad's Calcium and Growing Tumors 2010
So things have taken another turn for the worst. This Friday, dad had radiation on his leg. Since then, it doesn't seem to have helped, and his leg pain increased. Saturday morning one of the oncologists told us that his calcium had gone up due to the cancer. They gave him very strong medicine to reduce the calcium, but it's not guaranteed to work, and high calcium can lead to coma and death. Sometime around the same time the oncologist delivered the news that all his tumors had gotten bigger.
Previously, the doctors had said that if the Sutent didn't work we could try other drugs. His calcium has gone down a very small amount, but at this point he is not stable enough or strong enough to try another drug. Due to the progression of the tumors it's not likely he will be able to try another drug. His pain and other problems have increased. We raised his pain medications. The pain medicine puts him to sleep, and when he wakes up he's often in pain. The ironic part is that he looks really healthy and handsome. My mother has been sleeping overnight at the hospital since last night, and I go for about 10 hours a day and stay overnight at my parents' place. I'm going to be living here for the time being.
Update: His calcium came down, but it's a sign of the cancer progressing rapidly. He's weak and in a lot of pain and his kidney stopped working again.
Previously, the doctors had said that if the Sutent didn't work we could try other drugs. His calcium has gone down a very small amount, but at this point he is not stable enough or strong enough to try another drug. Due to the progression of the tumors it's not likely he will be able to try another drug. His pain and other problems have increased. We raised his pain medications. The pain medicine puts him to sleep, and when he wakes up he's often in pain. The ironic part is that he looks really healthy and handsome. My mother has been sleeping overnight at the hospital since last night, and I go for about 10 hours a day and stay overnight at my parents' place. I'm going to be living here for the time being.
Update: His calcium came down, but it's a sign of the cancer progressing rapidly. He's weak and in a lot of pain and his kidney stopped working again.
Friday, November 12, 2010
Dad's Emergency Leg Radiation 2010
Dad has been in the hospital since Friday. His kidney improved its function on its own. The nausea and stomach problems he developed in the hospital also improved after my mother asked for a number of interventions. But during this time his leg tumor grew very rapidly and is pushing on the bone (also noted because my mother demanded someone look at his leg). The doctors decided to send him to emergency leg radiation surgery today at the facility where he had his brain radiation surgery done. This is his third leg procedure he's had done. I'm dubious because as a rule radiation does not work on kidney cancer, which is what he has in his leg.
This weekend, I watched Joel Osteen, as I sometimes do if I come across him while changing channels. He gave a sermon about God helping those that help themselves and ask for God's help. He gave the example of David fighting Goliath with the only weapon available to him- a stick to make a sling shot. The idea is that God makes an otherwise inadequate weapon powerful. So here we are, here is our radiation stick. God, this is the part where you step in and make it work even though it otherwise wouldn't. Please and thank you.
This weekend, I watched Joel Osteen, as I sometimes do if I come across him while changing channels. He gave a sermon about God helping those that help themselves and ask for God's help. He gave the example of David fighting Goliath with the only weapon available to him- a stick to make a sling shot. The idea is that God makes an otherwise inadequate weapon powerful. So here we are, here is our radiation stick. God, this is the part where you step in and make it work even though it otherwise wouldn't. Please and thank you.
Sunday, October 24, 2010
Dad Progressing in Rehab 2010
October 24, 2010:
Dad took a walk outside and enjoyed the sun
Dad and Mom
Sunday, October 10, 2010
Dad's Kidney-Bladder Stint Surgery 2010
The urologist thought that a stint between his kidney and bladder might fix his problem. He had surgery early this morning. The surgery appears to have been successful. Mom is ecstatic. Dad seems to be in high spirits as well, making jokes and looking forward to returning to his non-intensive physical rehab.
Happy 10-10-10!
Happy 10-10-10!
Saturday, October 9, 2010
Dad's Mysterious Ailment 2010
So dad is still in the hospital. They don't know what's wrong because he's still having kidney failure-like symptoms. They wanted to release him yesterday because "his numbers look okay," but my mother knew he wasn't okay and argued until they ran more tests. She was correct. His new test numbers are not great. They don't know if there's a problem with the kidney, a blockage in the kidney due to blood clots, a problem due to the infection, or the theory that I am leaning towards that he is having side effects from Sutent such as swelling and blood clots. The oncologist dismissed the blood clots part of my theory, but did agree that taking him off Sutent while they figure it out makes sense.
I was frustrated that the oncologist didn't realize that dad had been on the higher dose of Sutent for only 4 days. (Around the time when all of these symptoms started.) Let me explain why this drives me crazy.
Here is the way this works: Mom and I get here around 8 am or earlier and talk to dad about the night before, then we meet the new nurse for the morning shift and she fills us in on any events during the night shift (important because dad is on a lot of pain medication and isn't always accurate) and any blood test results. If we're lucky we haven't missed any doctors because some of them sometimes come before 8 am, and dad is neither the best advocate for himself nor the best reporter on what the doctor said.
On a day such as today where his problem is complex or confusing we can expect unscheduled visits from a general doctor, a urologist, an oncologist, and a nephrologist (kidney specialist). Each doctor only knows about his particular area, and can only offer tests and theories based on his areas. Let's say the urologist is here, and I have a cross-over question such as "can the problem with urination (urologist) be caused by the kidney cancer (oncologist) drug?" The urologist will promptly throw his hands up and tell me that's a question for the oncologist. No one can tell me anything even a little out of their specialty even when my question seems to require both specialties.
So when the oncologist comes in, here's what I want from the oncologist: I want him to be a master of all of my dad's personal oncology-related information. I don't just want him to know that dad is on Sutent, I want him to know the entire course of my dad's Sutent treatment, including the fact that he started a higher dose 4 days ago, and that's when the symptoms started.
I am an attorney, and my job is arguably less important than that of a doctor, because if I mess up, probably no one will die. But it would be unthinkable that I would not know all the facts of my case, because if I don't know the facts, how am I ever going to apply the correct law? So that's what mom and I do, we talk to all the doctors and 1) remind them of the facts in dad's medical chart, 2) form a unified theory based on what all the different specialists say to us, 3) ask them leading questions regarding what we think might be wrong, and when all else fails 4) mom just flat out argues with them that dad cannot be released.
Anyway, dad is getting a kidney sonogram right now and that will tell us whether he has a blockage and we'll take it from there. Kevin's mother is also on her way to visit us today so she'll come see my dad at the hospital too.
Update: He has a blockage in his kidney and will have a minor surgery to let the blockage pass. It may or may not work. All these procedures are extremely frustrating to my dad and our family.
I was frustrated that the oncologist didn't realize that dad had been on the higher dose of Sutent for only 4 days. (Around the time when all of these symptoms started.) Let me explain why this drives me crazy.
Here is the way this works: Mom and I get here around 8 am or earlier and talk to dad about the night before, then we meet the new nurse for the morning shift and she fills us in on any events during the night shift (important because dad is on a lot of pain medication and isn't always accurate) and any blood test results. If we're lucky we haven't missed any doctors because some of them sometimes come before 8 am, and dad is neither the best advocate for himself nor the best reporter on what the doctor said.
On a day such as today where his problem is complex or confusing we can expect unscheduled visits from a general doctor, a urologist, an oncologist, and a nephrologist (kidney specialist). Each doctor only knows about his particular area, and can only offer tests and theories based on his areas. Let's say the urologist is here, and I have a cross-over question such as "can the problem with urination (urologist) be caused by the kidney cancer (oncologist) drug?" The urologist will promptly throw his hands up and tell me that's a question for the oncologist. No one can tell me anything even a little out of their specialty even when my question seems to require both specialties.
So when the oncologist comes in, here's what I want from the oncologist: I want him to be a master of all of my dad's personal oncology-related information. I don't just want him to know that dad is on Sutent, I want him to know the entire course of my dad's Sutent treatment, including the fact that he started a higher dose 4 days ago, and that's when the symptoms started.
I am an attorney, and my job is arguably less important than that of a doctor, because if I mess up, probably no one will die. But it would be unthinkable that I would not know all the facts of my case, because if I don't know the facts, how am I ever going to apply the correct law? So that's what mom and I do, we talk to all the doctors and 1) remind them of the facts in dad's medical chart, 2) form a unified theory based on what all the different specialists say to us, 3) ask them leading questions regarding what we think might be wrong, and when all else fails 4) mom just flat out argues with them that dad cannot be released.
Anyway, dad is getting a kidney sonogram right now and that will tell us whether he has a blockage and we'll take it from there. Kevin's mother is also on her way to visit us today so she'll come see my dad at the hospital too.
Update: He has a blockage in his kidney and will have a minor surgery to let the blockage pass. It may or may not work. All these procedures are extremely frustrating to my dad and our family.
Thursday, October 7, 2010
Dad's Sutent Side Effects 2010
Dad was moved from rehab back to the hospital. He was having some unpleasant symptoms, possibly from the Sutent, that looked the way the kidney failure looked. After two days the rehab sent him to the ER. Mom was there with him until 1:30 a.m. He doesn't appear to have kidney failure, but he did have a fever and some of his other levels were of concern so he's staying over night. His ct-scan showed no change from the last scan which is good since he's only been on the second round of Sutent for a few days.
Of course, in the meantime, his old job is in the process of changing insurance companies, so he's not showing up on either insurance and I'm trying to sort out the new insurance for my parents. This process is not fun considering that dad has many doctors and needs so much care. I'm worried that a wrong move will mean much larger bills.
Update: Dad has an infection. He's staying at the hospital on antibiotics while they watch him. He's going to keep taking the Sutent. He's not feeling too bad, and he's eager to return to rehab which I think is a good sign.
Of course, in the meantime, his old job is in the process of changing insurance companies, so he's not showing up on either insurance and I'm trying to sort out the new insurance for my parents. This process is not fun considering that dad has many doctors and needs so much care. I'm worried that a wrong move will mean much larger bills.
Update: Dad has an infection. He's staying at the hospital on antibiotics while they watch him. He's going to keep taking the Sutent. He's not feeling too bad, and he's eager to return to rehab which I think is a good sign.
Thursday, September 30, 2010
Dad Back in Rehab 2010
Dad finally moved to rehab yesterday, now that the doctors are comfortable that his kidney is back to functioning well on its own. Dad was transferred to a different facility than before, because his on-going leg pain in his right leg prevents him from returning to aggressive rehab.
He no longer needs speech therapy because his ability to speak has now fully returned thanks to the second brain surgery. Though as result of that surgery, his hairdo is still very punk. He started being able to read on his own again about two days ago. And now he can sit up for an hour or two which he couldn't do in rehab before. He still can't walk much or without assistance. He worked on his left leg today, and will be working on upper body strength.
Because his kidney is working again he can also metabolize the kidney cancer drug Sutent. The lower dose had no effect and his tumors got larger. He will start on a higher dose today or tomorrow, and hopefully that will take effect.
Mom continues to be a superhero and helps care for dad 12 hours a day every day. That's a more rigorous schedule than even Big Law attorneys have.
He no longer needs speech therapy because his ability to speak has now fully returned thanks to the second brain surgery. Though as result of that surgery, his hairdo is still very punk. He started being able to read on his own again about two days ago. And now he can sit up for an hour or two which he couldn't do in rehab before. He still can't walk much or without assistance. He worked on his left leg today, and will be working on upper body strength.
Because his kidney is working again he can also metabolize the kidney cancer drug Sutent. The lower dose had no effect and his tumors got larger. He will start on a higher dose today or tomorrow, and hopefully that will take effect.
Mom continues to be a superhero and helps care for dad 12 hours a day every day. That's a more rigorous schedule than even Big Law attorneys have.
Friday, September 24, 2010
Dad's Kidney Working 2010
After three days of dialysis and a little patient waiting, dad's kidney is working on it's own again. We are all tremendously relieved. My mother, who I am pretty sure is superwoman, is positively exuberant. Things are still a struggle but at least dad isn't immediately threatened. I'm glad I was able to spend the whole week with dad and with mom.
Wednesday, September 22, 2010
Dad's Dialysis 2010
We are not catching a lot of breaks here. The dye used in dad's second leg embolization caused his one kidney to fail. The doctors didn't even mention this possibility to us because he had already had a procedure with the dye and had no ill effect. That coupled with the news that his tumors had grown made for a bad weekend.
Finally the doctors decided to try dialysis for three consecutive days. Monday was day 1. I grilled the doctor before he started the dialysis machine on everything including why he was choosing one port spot over another. The doctor assured me that any risks were minimal, especially the way he did the procedure. I tried to explain to him that our luck was such that the most unlikely bad things were going to happen to us. The doctor started the procedure, and we discovered he was allergic to the regular dialysis chemicals. He had respiratory trouble and a team of people had to come in and treat him with a nebulizer and tons of Benedryl. Not good. One nurse said that in 19 years of working there, only one other person had ever had an allergic reaction to the normal dialysis. They changed him to a radiation-based dialysis (which they only had available because of that one other person with the allergy). He was extremely cold (and I have never seen him cold before) and uncomfortable throughout the procedure, but that seemed to be the result of the original distress.
The next two days of dialysis have been uneventful, but his kidney has not started functioning again. And without his kidney he also can't go back to taking the kidney cancer drug Sutent. But right now he looks good, and feels okay, except for the pain in his leg and the exhaustion he feels from all the other medication. Hopefully the doctors tomorrow have a good plan for us.
Finally the doctors decided to try dialysis for three consecutive days. Monday was day 1. I grilled the doctor before he started the dialysis machine on everything including why he was choosing one port spot over another. The doctor assured me that any risks were minimal, especially the way he did the procedure. I tried to explain to him that our luck was such that the most unlikely bad things were going to happen to us. The doctor started the procedure, and we discovered he was allergic to the regular dialysis chemicals. He had respiratory trouble and a team of people had to come in and treat him with a nebulizer and tons of Benedryl. Not good. One nurse said that in 19 years of working there, only one other person had ever had an allergic reaction to the normal dialysis. They changed him to a radiation-based dialysis (which they only had available because of that one other person with the allergy). He was extremely cold (and I have never seen him cold before) and uncomfortable throughout the procedure, but that seemed to be the result of the original distress.
The next two days of dialysis have been uneventful, but his kidney has not started functioning again. And without his kidney he also can't go back to taking the kidney cancer drug Sutent. But right now he looks good, and feels okay, except for the pain in his leg and the exhaustion he feels from all the other medication. Hopefully the doctors tomorrow have a good plan for us.
Thursday, September 16, 2010
Dad's Second Leg Embolization 2010
Yesterday dad had another leg embolization on his most painful leg tumor to cut it off from the blood supply. The first embolization was done with wires and this one was done with alcohol. We went to Teaneck Holy Name hospital for the surgery because apparently they are the regional embolization specialists. The surgery cut off about 80% of the blood flow so it is considered successful. However, the actual alcohol is very painful, so he temporarily has more pain than he did before the surgery. He is on a lot of pain medication so his rehab is on hold. Hopefully once the alcohol exits his system, he should go down to less pain than before. The doctors also got his dangerously high levels of calcium down. Hopefully when he recovers he will be going back to some sort of modified rehab.
Monday, September 13, 2010
Dad's Second Leg Ct-Scan 2010
Since the weekend began, dad's leg pain has been at an all-time high and has made it impossible for him to continue with rehab to walk. He's on his way to the ER now to have the leg scanned again so that we can figure out if there's something we can do to alleviate the pain.
Update: More bad news. The tumor in his leg grew so we're trying another surgery to cut off blood supply to it. The tumor can't be cut out because it's vascular.
Update: More bad news. The tumor in his leg grew so we're trying another surgery to cut off blood supply to it. The tumor can't be cut out because it's vascular.
Tuesday, September 7, 2010
Spoke to Dad on the Phone!
Because he can talk again! (Though it's not 100% yet.) If speaking to your parents whom you love isn't one of the happiest, most exciting things in your life, it's time to reconsider your attitude about life. Like right now.
Sunday, September 5, 2010
Friday, September 3, 2010
If there's anything I can do...
Absolutely all of my family and friends have sincerely offered their help. Most of the time I can't think of anything they can do to help, but by virtue of having had offers from everyone, every time I do need someone, I have a full mental Rolodex of people to turn to. I have had family and friends give medical advice, legal advice, rehab facility advice, send food, and one time when I thought I would actually need physical help, I felt like I knew who to turn to (even though I ended up not needing it). All of this is to say thank you. Even if I haven't yet called upon you to help with something, your offer is of immense value. And if I have asked you for something, it means the world to me, no matter how small it seems to you. Love you.
Moving dad to rehab tomorrow.
Moving dad to rehab tomorrow.
Tuesday, August 31, 2010
Dad's Brain Surgery 2010
Dad is scheduled for a "left frontal temporal awake craniotomy" at 7:40 a.m. tomorrow. I will update when he gets out.
Update: Surgery went well though it seems it was extremely unpleasant for dad. He's in ICU for now being observed.
Update: Surgery went well though it seems it was extremely unpleasant for dad. He's in ICU for now being observed.
Monday, August 30, 2010
Dad Back in the Hospital 2010
Mom and I were concerned about Dad's progress after the Thursday seizure. He wasn't regaining his speech and his right side was getting worse so we called his doctors and decided to admit him on Sunday. We went straight to the hospital from Vermont. They did a ct-scan that shows swelling. I feel awful because I know he hates the hospital, but if he can get back to where he was on Wednesday, I know he'll be much happier. Seriously, I know I said this already but visit your parents, hug them, and don't argue about unimportant things.
Update: Dad is getting an MRI today to determine whether he will need traditional brain surgery.
Update: Dad is getting an MRI today to determine whether he will need traditional brain surgery.
Friday, August 27, 2010
Dad's Seizure 2010
Dad had a seizure on Thursday that set back his progress with his speech and the use of his right side. It's possible that his antiseizure medication was set too low. It's frustrating, because things like this we can't even check or double guess. Kevin and I were at my parents yesterday and today, and dad seems better today than yesterday, so hopefully with the medication adjustment, it won't happen again. Hug your parents!
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