Dear family and friends,
It was 6 years ago in September that cancer picked our family to screw with.
It wasn't going to go easy on us. It hit Dave with a cancer we never heard of, multiple myeloma.
It gave Dave the latest stage of the disease, Stage III and added "high-risk" to his "poor" prognosis.
By the end of the first round, Dave was covered with lesions on his scull, legs, ribs, and arms and 90% of his healthy blood cells were pushed out and replaced with the cancerous "multiple myeloma" cell.
In an attempt at a KO, Dave went into kidney failure and came very close to losing his life. That is how advanced he was when we found out.
Dave got right in there and fought back, going into stringent complete response after multiple rounds of a threesome of chemo called RVD. To ensure a beat down happened, he successfully went through a stem cell transplant, securing he was the champ.
A year later he found out the he had a secondary cancer, parotid cancer, and had to have a very difficult surgery and rounds of radiation before he became cancer-free again.
He beat down two cancers!!
During this entire time, Dave was heavily on pain medications to control the terrible peripheral neuropathy he suffered from one of the chemos.
He had 3 years of no cancer, but cancer had been training and insisted on a rematch. The cancer was coming back and this time it was determined to win.
Dave put on his gloves, got in the ring, and did his best to contain cancer's aggression. But, Dave's body had been through so much from the first fight that he was having a difficult time dodging the hits.
My mom and I sat on the sidelines cheering him on. Fight Dave!! Fight!!
By the final round, we could tell Dave was tired. The chemo wasn't working and he was spending most of his days getting chemo, platelets, red blood cells, and fluids. He doesn't want to go to the hospital anymore. He was getting sicker and sicker and we new he couldn't take many more hits.
Last night, my mom and Dave called me over to let me know that he was done. He could no longer fight. He was throwing in the towel.
And before cancer could make the decision for him and strip him of what time he has left at home, it was decided to forego anymore treatments.
I laid in him arms and we cried as my mom watched on, tears staining her cheeks. The three of us were in it together from day one. And we will be in it together as we enter the next phase.
Our number one goal is to make sure he is not in pain and has some peace. Dave' s oncologist is setting Dave up with everything he needs from medicale bed to palliative care.
If you want to visit, I'd just try and stop by for a short time. He is mobile and enjoys sitting in the media room or the room by the kitchen. Its difficult for him to talk, but just sitting with him and talking about memories or listening to some music, which he loves would be comforting.
Hugs.
Monday, February 20, 2017
Friday, February 17, 2017
Dave Update- February 18, 2017
Family and Friends, Dave was released from the hospital yesterday after receiving his 5th plasmaphresis. He immediately was dropped off at his oncologists office to receive a 4 hour chemo treatment. He has two more plasmaphresis treatments scheduled for next week, along with two chemo treatments. The doctor is unsure if the plasmaphresis is making a difference. It is supposed to help with symptoms. I think he seemed a little more coherent and able to speak a bit clearer and longer, but he still has some confusion and his swelling is still an issue even though they went down for a bit this week after an infusion of a very strong water pill and by elevating his legs. But they swelled right back up.
He is very weak and my mom is concerned about getting him to take his medication and eat, since she and the nurses struggled to make this happen at the hospital. He is not putting enough nutrients and liquids into his body to make up for all that is being taken from him. The doctor said his numbers were a little better, but that the amount of multiple myeloma cells are still dominating his body.
Dave is having some strong feelings about being in the hospital for so long. It is something that will most likely continue since the chemo is causing his platelets and red blood cells to drop. The doctor wants to try another week of the current chemo combo to see if there is any improvements. The options after that are questionable because some of the more successful options are known to cause excessive bleeding which Dave really can't manage, unless he wants to constantly be in the hospital. Dave wants to continue to fight so we expect that there will be more hospital visits and chemo. A hospital bed is on order. This should help him be more comfortable at home. And he will be getting some sort of feeding bag whereas the much needed nutrients can be given to him through his port. Not sure how this works, but will find out more next week. He is happy to be home and his pup Coco is over-the-moon to have him back.
I worry about my mom. She will be his full-time caregiver and it is truly full-time. She has to help him with most things and actually got a taste of it at the hospital where she spent a great deal of time taking care of Dave. He is using a walker and help from my mom to get up and around.
As hard as it is to see, I also see the beauty in the commitment my mom has made to Dave. To truly see the vows she made to him over 30 years ago "in sickness and in health" come in to play, is probably the best lesson I will ever learn from my mother. She is committed, when I couldn't commit, she is strong, when I was weak, she is loyal when I wasn't. She loves Dave, she always has. She said she can't help but love him because he loves us kids, but I know it is more than that.
I'm just in utter amazement to see love tested at this level. One person caring for another person at their most vulnerable. She has to take the roll on of taking care of Dave and being strong when her life has been turned upside down too! It is not just his life that has been changed, but hers as well. My mom is one of the best people to take care of you if you are sick. She will wait on you and make sure you are comfortable, but she has always raised us to get up, wipe it off, and carry on. If Dave wants to fight this, she will be encouraging him to be an "active fighter."
Thank you to all his family and friends who came to visit Dave while he was in the hospital. It allowed my mom a little reprieve and Dave time to spend with the people he loves the most. If anyone would like to come help for a few hours to give my mom a break just let her know and see if it is a good day for a visit. He tends to not like her out of his sight, but she will need that time away to regroup in order to carry on.
Hugs
Jeana
He is very weak and my mom is concerned about getting him to take his medication and eat, since she and the nurses struggled to make this happen at the hospital. He is not putting enough nutrients and liquids into his body to make up for all that is being taken from him. The doctor said his numbers were a little better, but that the amount of multiple myeloma cells are still dominating his body.
Dave is having some strong feelings about being in the hospital for so long. It is something that will most likely continue since the chemo is causing his platelets and red blood cells to drop. The doctor wants to try another week of the current chemo combo to see if there is any improvements. The options after that are questionable because some of the more successful options are known to cause excessive bleeding which Dave really can't manage, unless he wants to constantly be in the hospital. Dave wants to continue to fight so we expect that there will be more hospital visits and chemo. A hospital bed is on order. This should help him be more comfortable at home. And he will be getting some sort of feeding bag whereas the much needed nutrients can be given to him through his port. Not sure how this works, but will find out more next week. He is happy to be home and his pup Coco is over-the-moon to have him back.
I worry about my mom. She will be his full-time caregiver and it is truly full-time. She has to help him with most things and actually got a taste of it at the hospital where she spent a great deal of time taking care of Dave. He is using a walker and help from my mom to get up and around.
As hard as it is to see, I also see the beauty in the commitment my mom has made to Dave. To truly see the vows she made to him over 30 years ago "in sickness and in health" come in to play, is probably the best lesson I will ever learn from my mother. She is committed, when I couldn't commit, she is strong, when I was weak, she is loyal when I wasn't. She loves Dave, she always has. She said she can't help but love him because he loves us kids, but I know it is more than that.
I'm just in utter amazement to see love tested at this level. One person caring for another person at their most vulnerable. She has to take the roll on of taking care of Dave and being strong when her life has been turned upside down too! It is not just his life that has been changed, but hers as well. My mom is one of the best people to take care of you if you are sick. She will wait on you and make sure you are comfortable, but she has always raised us to get up, wipe it off, and carry on. If Dave wants to fight this, she will be encouraging him to be an "active fighter."
Thank you to all his family and friends who came to visit Dave while he was in the hospital. It allowed my mom a little reprieve and Dave time to spend with the people he loves the most. If anyone would like to come help for a few hours to give my mom a break just let her know and see if it is a good day for a visit. He tends to not like her out of his sight, but she will need that time away to regroup in order to carry on.
Hugs
Jeana
Tuesday, February 14, 2017
Dave Update- February 14, 2017
Hello friends and family, I know so many of you are thinking about Dave and my mom and they certainly needs your positive thoughts and prayers.
Dave has been in the hospital since Saturday. Unfortunately, three weeks into the new chemo combo and there has been no improvement, but Dave's health continues to deteriorate as he fights the cancer itself and all the many side affects and damage done by the medication meant to heal him.
The best analogy I can give is that Dave is like a pitcher of water that has many holes. Every time you cover one hole up with a finger another starts to leak. We are running out of fingers as we keep getting more and more holes.
I'm so happy that many of you stopped by to see him and my mom last week. I know he loved seeing his cousins and his beloved Aunt Wana. We had a little birthday celebration for him on February 1 and although he was tired, he came out to visit with me, my brother Vern and his family, his sister Linda, and momma. I think he was a bit overwhelmed with the amount of people, but it did make my mom happy to have some of her kids there.
The swelling in Dave's legs, feet, and ankles is extreme. He probably has about 20-30 pounds of water retention that water pills won't touch. This has made walking very uncomfortable for him. We found out the swelling has to do with congestive heart failure.
Heart failure does not mean his heart has stopped working, but that is not pumping as good as it should. This has caused his kidneys to respond by causing the body to retain water and salt, thus the fluid retention. Another symptom is congested lungs which they have found some fluid in one of his lungs. This has caused him to have some difficulty with breathing. He has also had a rapid heart rate because his heart is attempting to pump enough blood to the body.
Dave has not been eating which isn't helping the edema (swelling of body tissues). He is having difficulty swallowing. The issues with swallowing has not only made it difficult for him to eat, but also difficult to take his medication. Yesterday when I visited him at the hospital, we were told that he has bronchitis. The nurse tried to give him an oral antibiotic, but Dave struggled to take it. They sent a speech therapist over to get more information and assess his eating and drinking. They are trying adjust his diet to liquid and softer foods.
The reason he is in the hospital, among the fact that he needed infusions of platelets and red blood cells is the doctor has decided to try pheresis. This is a procedure where the patients blood is drawn, separated into certain elements and then replaced back in the body. Dave had this done when he was initially diagnosed and was going into kidney failure. It saved his life. We are hopeful that the procedure will at a minimum relieve the swelling and make him more lucid. It won't help the multiple myeloma, but it can help his body want to fight the cancer.
Have you felt like there was a crack in your heart? I can literally feel my heart slowly breaking as I watch this man I adore fighting such a fierce opponent. I have never felt this type of pain before. I understand the circle of life and I know this is part of it, but having cancer is a cruel fate.
I feel angry. Angry at GOD! I have yelled and screamed and cried in my car driving home. This isn't how things were supposed to happen. I was supposed to take care of Dave in his old age. His grandma lived to over 100 and my grandpa to 90. Why did Dave have to get cancer at 56! And spend the last 6 years literally fighting for his life. And fight he has. He is my hero. He is the bravest man I know. He has not given up. Even would I would have. He still has places he wants to go. It's not necessarily new places, but he loves to share places with people he loves. He told me the other night he would like to go back to Switzerland and Fiji. I wish I could make that happen for him.
Many of you know the heart and spirit of my dad. He is the life of the party. To see him so vulnerable, weak, confused, and scared is causing the crack in my heart to grow deeper. I miss him! I want him back! I don't want him to leave me! It hurts so bad! I try to be strong when I'm with him and my mom, but....
He wants to go home. Every time my mom is with him he asks to go home. He doesn't want to be at the hospital anymore. I don't blame him. He's got a port in his neck, blood constantly being drawn, infusions, chemo; honestly too many things to list. I feel selfish to ask for a miracle. Why would God do that for our family when there are so many more people praying for the same thing.
Dave finished his first treatment last night and is about the same today. He will be there at least 4 more nights for the treatment and more after he gets out. The doctor is taking it day by day and we will keep placing our fingers on each hole in the pitcher under there are no more fingers left.
You can text my mom if you would like to send Dave a message. She will read them to him. He is pretty tired and overwhelmed with all the treatments and not up to too many visitors, but know he appreciates you well wishes and love.
Hugs
Jeana
Dave has been in the hospital since Saturday. Unfortunately, three weeks into the new chemo combo and there has been no improvement, but Dave's health continues to deteriorate as he fights the cancer itself and all the many side affects and damage done by the medication meant to heal him.
The best analogy I can give is that Dave is like a pitcher of water that has many holes. Every time you cover one hole up with a finger another starts to leak. We are running out of fingers as we keep getting more and more holes.
I'm so happy that many of you stopped by to see him and my mom last week. I know he loved seeing his cousins and his beloved Aunt Wana. We had a little birthday celebration for him on February 1 and although he was tired, he came out to visit with me, my brother Vern and his family, his sister Linda, and momma. I think he was a bit overwhelmed with the amount of people, but it did make my mom happy to have some of her kids there.
The swelling in Dave's legs, feet, and ankles is extreme. He probably has about 20-30 pounds of water retention that water pills won't touch. This has made walking very uncomfortable for him. We found out the swelling has to do with congestive heart failure.
Heart failure does not mean his heart has stopped working, but that is not pumping as good as it should. This has caused his kidneys to respond by causing the body to retain water and salt, thus the fluid retention. Another symptom is congested lungs which they have found some fluid in one of his lungs. This has caused him to have some difficulty with breathing. He has also had a rapid heart rate because his heart is attempting to pump enough blood to the body.
Dave has not been eating which isn't helping the edema (swelling of body tissues). He is having difficulty swallowing. The issues with swallowing has not only made it difficult for him to eat, but also difficult to take his medication. Yesterday when I visited him at the hospital, we were told that he has bronchitis. The nurse tried to give him an oral antibiotic, but Dave struggled to take it. They sent a speech therapist over to get more information and assess his eating and drinking. They are trying adjust his diet to liquid and softer foods.
The reason he is in the hospital, among the fact that he needed infusions of platelets and red blood cells is the doctor has decided to try pheresis. This is a procedure where the patients blood is drawn, separated into certain elements and then replaced back in the body. Dave had this done when he was initially diagnosed and was going into kidney failure. It saved his life. We are hopeful that the procedure will at a minimum relieve the swelling and make him more lucid. It won't help the multiple myeloma, but it can help his body want to fight the cancer.
Have you felt like there was a crack in your heart? I can literally feel my heart slowly breaking as I watch this man I adore fighting such a fierce opponent. I have never felt this type of pain before. I understand the circle of life and I know this is part of it, but having cancer is a cruel fate.
I feel angry. Angry at GOD! I have yelled and screamed and cried in my car driving home. This isn't how things were supposed to happen. I was supposed to take care of Dave in his old age. His grandma lived to over 100 and my grandpa to 90. Why did Dave have to get cancer at 56! And spend the last 6 years literally fighting for his life. And fight he has. He is my hero. He is the bravest man I know. He has not given up. Even would I would have. He still has places he wants to go. It's not necessarily new places, but he loves to share places with people he loves. He told me the other night he would like to go back to Switzerland and Fiji. I wish I could make that happen for him.
Many of you know the heart and spirit of my dad. He is the life of the party. To see him so vulnerable, weak, confused, and scared is causing the crack in my heart to grow deeper. I miss him! I want him back! I don't want him to leave me! It hurts so bad! I try to be strong when I'm with him and my mom, but....
He wants to go home. Every time my mom is with him he asks to go home. He doesn't want to be at the hospital anymore. I don't blame him. He's got a port in his neck, blood constantly being drawn, infusions, chemo; honestly too many things to list. I feel selfish to ask for a miracle. Why would God do that for our family when there are so many more people praying for the same thing.
Dave finished his first treatment last night and is about the same today. He will be there at least 4 more nights for the treatment and more after he gets out. The doctor is taking it day by day and we will keep placing our fingers on each hole in the pitcher under there are no more fingers left.
You can text my mom if you would like to send Dave a message. She will read them to him. He is pretty tired and overwhelmed with all the treatments and not up to too many visitors, but know he appreciates you well wishes and love.
Hugs
Jeana
Saturday, January 28, 2017
dave Update- January 28,2017
Hello family and friends, I wish I had better news. On Wednesday, we received the last lab that we were waiting for, Dave's M-Spike. The M-Spike is one of the best ways to monitor the progress of the cancer. Our goal is to be 0.0, this would mean that there is no active multiple myeloma cells and that Dave was in complete response (similar to remission). Dave's M-Spike came back as 3.4.
This, and the fact that his numbers haven't significantly changed after 4 rounds of Dara (new chemo), it has been concluded that this chemo on its own is not working. Thursday, Dave had an infusion of Cart (chemo) and he was started back on Dex (steroid). On Friday, back to the oncologist for his weekly Dara infusions. His labs showed his red blood cells and platelets were low and his calcium is high. So after hours of his chemo infusion, Dave had to go to the hospital for night of blood infusions and an infusion of another drug that helps with the high levels of calcium.
Dave is not doing well. I want to be as forthright as possible. He is not getting better, in fact he is getting worse. Our prayer is that this new combo will take affect quickly because his health is deteriorating quickly. He is very confused and is having a difficult time processing information. This has a lot to do with dehydration, low blood counts, and the high calcium levels. The doctors are doing absolutely everything they can do to treat all of these symptoms. Some of the symptoms are from the disease. Some of the symptoms are from the chemo and treatments he is getting to fight down the disease.
I have to thank all of you for sending your love and kind words to my mom and Dave. They do need that positive support and encouragement. I have to give a special thanks to Steve Strong, a long-time friend of Dave who has been coming by regularly to pray with Dave and just be the great friend he has always been. Thank you as well to Dave and Jackie Benson (Dave's business partner and wife) who came by for a visit even though Dave B. just had serious eye surgery.
It is difficult to watch someone you love in pain, scared, and suffering a cruel disease. Sometimes facing it makes us question our own mortality. Sometimes I want to forget this is happening to our family. I don't want this disease to win. I want to control it. How would I handle having cancer? Would I fight? Would I be as brave and strong as Dave has been? I hate how the doctors look at you all sad like they have a secret, but they don't want you to know. I hate how people avoid you because they don't want to see you sick. I hate that I have done that exact same thing to others I should have reached out to but was too scared because I didn't know what to say. You don't have to say anything. Being present is enough.
I'm not saying it is easy. I tend to joke and go into research mode. It's my way of coping. I try to be strong and helpful, but the reality is I just want to BE with two of the people I love the most in the world and I want them to know I am here for them no matter what. Maybe the three of us are in denial. Hope is a powerful thing. This is Dave's fight. We are in the ring with him and we will stand right by him for as many rounds that he wants to go.
Hugs
Jeana
This, and the fact that his numbers haven't significantly changed after 4 rounds of Dara (new chemo), it has been concluded that this chemo on its own is not working. Thursday, Dave had an infusion of Cart (chemo) and he was started back on Dex (steroid). On Friday, back to the oncologist for his weekly Dara infusions. His labs showed his red blood cells and platelets were low and his calcium is high. So after hours of his chemo infusion, Dave had to go to the hospital for night of blood infusions and an infusion of another drug that helps with the high levels of calcium.
Dave is not doing well. I want to be as forthright as possible. He is not getting better, in fact he is getting worse. Our prayer is that this new combo will take affect quickly because his health is deteriorating quickly. He is very confused and is having a difficult time processing information. This has a lot to do with dehydration, low blood counts, and the high calcium levels. The doctors are doing absolutely everything they can do to treat all of these symptoms. Some of the symptoms are from the disease. Some of the symptoms are from the chemo and treatments he is getting to fight down the disease.
I have to thank all of you for sending your love and kind words to my mom and Dave. They do need that positive support and encouragement. I have to give a special thanks to Steve Strong, a long-time friend of Dave who has been coming by regularly to pray with Dave and just be the great friend he has always been. Thank you as well to Dave and Jackie Benson (Dave's business partner and wife) who came by for a visit even though Dave B. just had serious eye surgery.
It is difficult to watch someone you love in pain, scared, and suffering a cruel disease. Sometimes facing it makes us question our own mortality. Sometimes I want to forget this is happening to our family. I don't want this disease to win. I want to control it. How would I handle having cancer? Would I fight? Would I be as brave and strong as Dave has been? I hate how the doctors look at you all sad like they have a secret, but they don't want you to know. I hate how people avoid you because they don't want to see you sick. I hate that I have done that exact same thing to others I should have reached out to but was too scared because I didn't know what to say. You don't have to say anything. Being present is enough.
I'm not saying it is easy. I tend to joke and go into research mode. It's my way of coping. I try to be strong and helpful, but the reality is I just want to BE with two of the people I love the most in the world and I want them to know I am here for them no matter what. Maybe the three of us are in denial. Hope is a powerful thing. This is Dave's fight. We are in the ring with him and we will stand right by him for as many rounds that he wants to go.
Hugs
Jeana
Wednesday, January 25, 2017
Dave Update- January 25, 2017
Hi family and friends, I know you've been anxiously waiting for information regarding Dave's appointment with the Stanford Multiple Myeloma specialist.
Monday was an incredibly long day. We left at 7:30 a.m. and did not get home until 9:30 p.m. in the evening. It was quite a ride. We hit the blackest clouds I think I've ever seen and the rain was so hard we could barely see.
Upon arriving, Dave went to draw blood. He draws blood so often, I wonder how he has any blood left. Oh ya, he doesn't. Thus, the endless transfusions.
Because of the bone damage due to lesions and swollen, feet, ankles, and lower legs, Dave has a very difficult time walking. He insisted on walking even though a wheelchair would have been easier for him. He is the most courageous and strongest man I have ever met.
By the time his appointment came at 1:20 p.m., we were ready and already tired. People kept getting called, even those who came after us. We were all getting a little restless. It truly is a humbling experience when you are in a unit of the hospital that deals solely with cancer. You see many people fighting the fight and their loving caregivers right by their side. There was a boy around my sons age, wheeled in on a gurney waiting to be seen. Cancer does not discriminate and it does not give pardons to the young. This young boy touched each of us and you can't help but think no matter how hard you have it, someone out there has it harder.
Finally my mom, who I get my patience from, went up and asked about our appointment. Ends up they actually forgot about us. Geesh, not a good start. We did get a free parking pass and a $10 dollar gas card. I think a couple steak dinners would have been nice....
We met with the specialist and one of her team members. They had a lot of questions. The first one being to Dave, "How are you?" Dave, remembering his manners that his momma taught him instantly responded, "Fine." "No he's not!," I interjected. He might as well not have not been there because mom and I didn't allow any information to be left out. If you know Dave, he likes people and he will take the time to ask about others even when we have an appointment to talk about HIM! That's where I come in. I'm the enforcer. "Are you eating,?" the doctor asks Dave. "No, he's not,!" I respond for him. "Are you in any pain?" "Yes, he is. Everything hurts and he is having problems walking, his nose has been bleeding, his feet, ankles, and legs are swollen, he has had to have multiple transfusions...." See what I mean? Dave might of well just stayed home. He was really interrupting MY appointment with the doctor, tee, hee.
The doctor stated she reviewed his numbers that we brought from his oncologist and stated it didn't look like the Daratumumab (new chemo that he started on December 30) was working after four rounds. Daratumumab is a new break though drug that has shown positive response for patients who have relapsed or are refractory to two or three previous options.
She didn't have his blood results back from earlier in the day and after asking what was the date on the labs she was reviewing, it seemed she had yet to receive his latest labs that were conducted that previous Thursday. "Doctor, according to my research, many patients don't see any results until after six rounds. If you are looking at results that are before his forth round and you don't even have today's labs, shouldn't we wait until we get today's labs back before making that assessment,?" I asked.
She agreed and we decided if there was no improvement we would add another chemo and make it a combo of Dara/Dex/Cart. I asked about a couple other combos that I studied and she said they were good options, but because of Dave's low blood red cells and low platelets, they wouldn't be a good option for him.
I asked her to look at Dave's legs and feet so we could determine why they are so swollen. We thought it might be a reaction to a drug he used for the first time that helps him with calcium, but she believed it had more to do with other issues, like perhaps the fact that he is not eating and not getting enough protein among other possibilities that we will be looking into.
Being the mature daughter that I am, I responded, "Ah ha, I knew it!" Then mom and I proceeded to rat him out regarding his picky eating habits (way before cancer). I told the doctor I've raised two kids and I'm very versed on holding someone down to get them to take something they don't want. Man, German doctor's are very serious. I got nothing from her on that one.
We went over some other things to look out for: blood clotting, spine issues, etc. that we will be discussing with his oncologist. "If you have any questions, you can always message me on the Standford's MyHealth page," the doctor shared. I looked at her with all the seriousness I could muster up, "You sure you want to open your email up to me?" Silly, silly doctor....
Let's just put it this way, when I asked for Dave's oncologist's email because I had some questions for him, Dave responded, "You're going to be polite, right?"
"Geesh, Dave, I'm not a monster! I'm your daughter! O.K, same thing!" Mostly when you want your dad to get the best care possible and the only thing he can think to ask the doctor is, "You're German, right?" God love him. He can't help himself.
Needless to say, we left feeling like we didn't get far. I reviewed Dave's latest numbers today and it does look like there has been little improvement. I'm waiting for his M-spike results, which, along with checking his bone marrow and IGa, is a good lab to review in order to track his progress. He will be meeting with his local oncologist on Friday to discuss further, but it looks like we are going to have to try something new. I'll keep you posted.
After getting home, I had a pinched nerve in my lower back and a sore neck from being in the car and waiting at the hospital so long. Mom and Dave have been waiting in hospitals and doctor's offices and driving the drive to Stanford more than anyone should have to endure.
The love, compassion, and respect I have for my mom and Dave are beyond words. One day in their shoes makes be realize what amazing human beings my parents are. I plan to be with both of them, hand-in-hand, through this fight until we can't fight anymore!
Thank you all for the love and support. Keep your positive texts and messages coming. Dave is tired, but he is reading your text messages. Don't forget my mom either. Caregivers often get ignored, but she is in it for the long haul and it is emotionally and physically taxing for her as well.
Dave's number is: 559-740-8815 and mom's is 559-909-0863.
Monday was an incredibly long day. We left at 7:30 a.m. and did not get home until 9:30 p.m. in the evening. It was quite a ride. We hit the blackest clouds I think I've ever seen and the rain was so hard we could barely see.
Upon arriving, Dave went to draw blood. He draws blood so often, I wonder how he has any blood left. Oh ya, he doesn't. Thus, the endless transfusions.
Because of the bone damage due to lesions and swollen, feet, ankles, and lower legs, Dave has a very difficult time walking. He insisted on walking even though a wheelchair would have been easier for him. He is the most courageous and strongest man I have ever met.
By the time his appointment came at 1:20 p.m., we were ready and already tired. People kept getting called, even those who came after us. We were all getting a little restless. It truly is a humbling experience when you are in a unit of the hospital that deals solely with cancer. You see many people fighting the fight and their loving caregivers right by their side. There was a boy around my sons age, wheeled in on a gurney waiting to be seen. Cancer does not discriminate and it does not give pardons to the young. This young boy touched each of us and you can't help but think no matter how hard you have it, someone out there has it harder.
Finally my mom, who I get my patience from, went up and asked about our appointment. Ends up they actually forgot about us. Geesh, not a good start. We did get a free parking pass and a $10 dollar gas card. I think a couple steak dinners would have been nice....
We met with the specialist and one of her team members. They had a lot of questions. The first one being to Dave, "How are you?" Dave, remembering his manners that his momma taught him instantly responded, "Fine." "No he's not!," I interjected. He might as well not have not been there because mom and I didn't allow any information to be left out. If you know Dave, he likes people and he will take the time to ask about others even when we have an appointment to talk about HIM! That's where I come in. I'm the enforcer. "Are you eating,?" the doctor asks Dave. "No, he's not,!" I respond for him. "Are you in any pain?" "Yes, he is. Everything hurts and he is having problems walking, his nose has been bleeding, his feet, ankles, and legs are swollen, he has had to have multiple transfusions...." See what I mean? Dave might of well just stayed home. He was really interrupting MY appointment with the doctor, tee, hee.
The doctor stated she reviewed his numbers that we brought from his oncologist and stated it didn't look like the Daratumumab (new chemo that he started on December 30) was working after four rounds. Daratumumab is a new break though drug that has shown positive response for patients who have relapsed or are refractory to two or three previous options.
She didn't have his blood results back from earlier in the day and after asking what was the date on the labs she was reviewing, it seemed she had yet to receive his latest labs that were conducted that previous Thursday. "Doctor, according to my research, many patients don't see any results until after six rounds. If you are looking at results that are before his forth round and you don't even have today's labs, shouldn't we wait until we get today's labs back before making that assessment,?" I asked.
She agreed and we decided if there was no improvement we would add another chemo and make it a combo of Dara/Dex/Cart. I asked about a couple other combos that I studied and she said they were good options, but because of Dave's low blood red cells and low platelets, they wouldn't be a good option for him.
I asked her to look at Dave's legs and feet so we could determine why they are so swollen. We thought it might be a reaction to a drug he used for the first time that helps him with calcium, but she believed it had more to do with other issues, like perhaps the fact that he is not eating and not getting enough protein among other possibilities that we will be looking into.
Being the mature daughter that I am, I responded, "Ah ha, I knew it!" Then mom and I proceeded to rat him out regarding his picky eating habits (way before cancer). I told the doctor I've raised two kids and I'm very versed on holding someone down to get them to take something they don't want. Man, German doctor's are very serious. I got nothing from her on that one.
We went over some other things to look out for: blood clotting, spine issues, etc. that we will be discussing with his oncologist. "If you have any questions, you can always message me on the Standford's MyHealth page," the doctor shared. I looked at her with all the seriousness I could muster up, "You sure you want to open your email up to me?" Silly, silly doctor....
Let's just put it this way, when I asked for Dave's oncologist's email because I had some questions for him, Dave responded, "You're going to be polite, right?"
"Geesh, Dave, I'm not a monster! I'm your daughter! O.K, same thing!" Mostly when you want your dad to get the best care possible and the only thing he can think to ask the doctor is, "You're German, right?" God love him. He can't help himself.
Needless to say, we left feeling like we didn't get far. I reviewed Dave's latest numbers today and it does look like there has been little improvement. I'm waiting for his M-spike results, which, along with checking his bone marrow and IGa, is a good lab to review in order to track his progress. He will be meeting with his local oncologist on Friday to discuss further, but it looks like we are going to have to try something new. I'll keep you posted.
After getting home, I had a pinched nerve in my lower back and a sore neck from being in the car and waiting at the hospital so long. Mom and Dave have been waiting in hospitals and doctor's offices and driving the drive to Stanford more than anyone should have to endure.
The love, compassion, and respect I have for my mom and Dave are beyond words. One day in their shoes makes be realize what amazing human beings my parents are. I plan to be with both of them, hand-in-hand, through this fight until we can't fight anymore!
Thank you all for the love and support. Keep your positive texts and messages coming. Dave is tired, but he is reading your text messages. Don't forget my mom either. Caregivers often get ignored, but she is in it for the long haul and it is emotionally and physically taxing for her as well.
Dave's number is: 559-740-8815 and mom's is 559-909-0863.
Thursday, January 19, 2017
Dave Update- January 19, 2017
Time goes so fast. It was 2013 the last time I updated you. The good news is that for the past several years Dave has led a relatively normal life for someone who has fought cancer.
Dave was diagnosed with Multiple Myeloma, cancer of the plasma cells, in September of 2010. Upon diagnosis, 90% of Dave's plasma cells were malignant and his kidneys were failing. He was vigilant in his fight. He went through rounds of chemo and had a stem cell transplant in 2011. Both were a success and he reached stringent complete response. Since this cancer is incurable, they don't call it remission. Stringent complete response was the best of the best. Dave chose to not go on maintenance treatment which would require him to be on a non-stop regiment of chemo.
The news was short lived as we soon found out Dave had malignant parotid cancer. Surgery was a success, but he suffered many side affects from the surgery, including facial paralysis, numbness, and other issues. Not much longer after that, Dave was hospitalized with the most painful case of shingles. Dave has also suffered from extreme bone pain do to lesions on is bones caused by the cancer. Since being diagnosed, and up until recently, Dave has worked and has been a major contributor to the success of Miracle Ear. Many multiple Myeloma patients can't even work. It goes to show how strong Dave is in mind and spirit.
Finding out Dave had cancer was like a sucker punch to him, me, and our entire family. He was 56 years old when diagnosed with this disease that typically plagues individuals much older. Sadly, that is not the case any longer as more and more young people are fighting this treatable, but not curable disease.
In 2015, we got the news that Dave was out of remission. His numbers were rising and it was time to get on chemo. There were many new options and Dave was placed on two chemo therapies. The cocktail of chemo seemed to hold his numbers steady until August 2016 when they seemed to rise and continue to rise at a rapid pace. Dave started to lose his voice and was having very bad pains in chest area. We found out that he broke two ribs and the cancer was affecting his vocal cords. He also started having bloody noses that would not stop.
The doctor became concerned and did a full body scan and bone marrow extraction. We found out that Dave had multiple lesions on his scull, ribs, shoulders, and legs. Needless to say, he was in a lot of physical pain. The doctor gave us the news that the cancer is back with a vengeance and that once again 90% of his body has malignant plasma.
His health has deteriorated very quickly. He was sent to Stanford right after Christmas where they started him on a new chemo in hopes that it will beat the cancer down. He is on his 4th round and little has changed. He has been hospitalized multiple times because of low red-blood cells that had to be replaced through transfusions and just this week had to get a transfusion of plasma. Tonight, he has to do another transfusion of red-blood cells. He is also anemic and has had to have liter upon liter of fluids.
I know many of you are concerned as is our entire family. We do not know what the future holds or what is up next for Dave. It is up to him now. Dave is a fighter and he is doing all that he can to sleigh this beast again.
We head to Stanford on Monday to meet with the Multiple Myeloma specialist to discuss options.
If you want to come by for a visit, please text Dave or my Mom to see if it is a good time. You may also contact me at 559-972-5754 if you have any questions or would like an update.
Dave is celebrating is 62nd birthday of February 1 if you would like to send warm wishes.
Hugs
Jeana
Dave was diagnosed with Multiple Myeloma, cancer of the plasma cells, in September of 2010. Upon diagnosis, 90% of Dave's plasma cells were malignant and his kidneys were failing. He was vigilant in his fight. He went through rounds of chemo and had a stem cell transplant in 2011. Both were a success and he reached stringent complete response. Since this cancer is incurable, they don't call it remission. Stringent complete response was the best of the best. Dave chose to not go on maintenance treatment which would require him to be on a non-stop regiment of chemo.
The news was short lived as we soon found out Dave had malignant parotid cancer. Surgery was a success, but he suffered many side affects from the surgery, including facial paralysis, numbness, and other issues. Not much longer after that, Dave was hospitalized with the most painful case of shingles. Dave has also suffered from extreme bone pain do to lesions on is bones caused by the cancer. Since being diagnosed, and up until recently, Dave has worked and has been a major contributor to the success of Miracle Ear. Many multiple Myeloma patients can't even work. It goes to show how strong Dave is in mind and spirit.
Finding out Dave had cancer was like a sucker punch to him, me, and our entire family. He was 56 years old when diagnosed with this disease that typically plagues individuals much older. Sadly, that is not the case any longer as more and more young people are fighting this treatable, but not curable disease.
In 2015, we got the news that Dave was out of remission. His numbers were rising and it was time to get on chemo. There were many new options and Dave was placed on two chemo therapies. The cocktail of chemo seemed to hold his numbers steady until August 2016 when they seemed to rise and continue to rise at a rapid pace. Dave started to lose his voice and was having very bad pains in chest area. We found out that he broke two ribs and the cancer was affecting his vocal cords. He also started having bloody noses that would not stop.
The doctor became concerned and did a full body scan and bone marrow extraction. We found out that Dave had multiple lesions on his scull, ribs, shoulders, and legs. Needless to say, he was in a lot of physical pain. The doctor gave us the news that the cancer is back with a vengeance and that once again 90% of his body has malignant plasma.
His health has deteriorated very quickly. He was sent to Stanford right after Christmas where they started him on a new chemo in hopes that it will beat the cancer down. He is on his 4th round and little has changed. He has been hospitalized multiple times because of low red-blood cells that had to be replaced through transfusions and just this week had to get a transfusion of plasma. Tonight, he has to do another transfusion of red-blood cells. He is also anemic and has had to have liter upon liter of fluids.
I know many of you are concerned as is our entire family. We do not know what the future holds or what is up next for Dave. It is up to him now. Dave is a fighter and he is doing all that he can to sleigh this beast again.
We head to Stanford on Monday to meet with the Multiple Myeloma specialist to discuss options.
If you want to come by for a visit, please text Dave or my Mom to see if it is a good time. You may also contact me at 559-972-5754 if you have any questions or would like an update.
Dave is celebrating is 62nd birthday of February 1 if you would like to send warm wishes.
Hugs
Jeana
Tuesday, January 29, 2013
Dave Update-January, 2013
Wow, I can't believe its been 7 months since I've updated this blog. I can't believe it has been 2 years and 4 months since I met my arch enemy- CANCER.
This is what my children so lovingly call each other. Arch Enemies.
And, yes, I realize this does not reflect positively on my parenting skills.
I hate cancer today as much as I hated it over two years ago when it penetrated itself into my life and the lives of my family.
Since then, it has taken several of my colleagues and one of my favorite rappers of all time, MCA of the Beastie Boys, at age 47!
Yes. I like rap. I realize it is hard to believe, but its true.
As a matter of fact, the only reason I tune into American Idol these days is because of Niki Minaj. "Wow Boo, that song was tappen!" The kids say I embarass them, when I say things like, "Yo, Yo, Baby Pop, What Up, and True dhat. And, God forbid if I get my groove on to a song by Lil Wayne, Pitbull, or Flo Rider while driving.
Hey, I'm sorry, rap is way better than country music. I actually heard a country song on the radio the other day, called, "I drank a beer with Jesus!" Really? Now, I can understand if it was titled, "I drank a glass of wine with Jesus." But a beer!
Sorry, I digress... as usual.
Dave's cancer continues to be inactive. Another words, he continues to be in complete response (remission) since finishing initial therapy at the end of 2010/beginning of 2011. He was in remission when he got the stem cell transplant in June of 2012, and it was, and continues to be, our hope that he will be in remission for a very long time. He still goes to the doctors monthly and has an infusion of zometa for his bones and is still fighting peripheral neurapathy caused by the cocktail of chemo that helped to save his life. Pain management will probably be something he has to deal with from now on. It's part of his new normal.
There has been so much new information and new drug therapies getting approval that are providing more and more options for multiple myeloma patients. It is amazing what is happening in the multiple myeloma community in terms of research.
I've learned more and more and have more and more questions I want answered.
The most interesting information that I've learned is in regard to Dave's abnormal chromosome (4;14) which makes him a high-risk patient. Before, it was thought that if you had any traces of this abnormal chromosome, or other high-risk deletions, you had a poor prognosis, i.e. the high-risk prognosis. Well, it has recently come to light that it is not the fact that you have the abnormal chromosome that makes your prognosis worse, but the amount of cells that are affected by the abnormal chromosome. So, my next question to Dave's doctor is, how much of this abnormal chromosome cells does Dave have?
The high-risk prognosis typically means that the patient doesn't stay in remission very long (Dave has been in remission for 2 years). Note: The average remission for a low-risk patient is 2-3 years. Also, high-risk patients don't respond as well to therapies found to work on low-risk patients. Dave, responded with the best response you can get from initial therapy and from a stem cell transplant!
If, or when, Dave does end remission (at this point there is no cure), he has so many options for continued therapy. There are so many new combinations of drugs that are proving to be very affective and even some combinations that are working on patients that had become refractory to other therapies.
What was once considered a terminal cancer is very close to becoming labeled a chronic illness. I really believe this will be the case in the very near future and that would mean a cure could be not far behind.
Sadly.
Dave has been wallowing in this cancer thing.
I mean, seriously, all he does is sit around a mope.
He doesn't even leave the house.
He makes sure that everyone knows he has CANCER!
NOT!
Reality.
Dave is now on a two-week cruise in the Orient, along with my mom, his brother Steve (and Jerri), and cousin Randy (and Sharon)...
After, spending Thankgiving in Costa Rica with my mom in November...
And, after, spending a long weekend with my husband Cory, and brothers Ben and Vern, in Washington in September.
Dave is living life.
Like there is no tomorrow.
He is loving his family.
Like he'll never see them again.
He is treating cancer.
Like it has no power.
Dave is a constant reminder to me on how unique we are. Statistics don't define us. Cancer does not define us. It is the ability of our human spirit to have hope, curiosity, and purpose. It is only when our spirit dies, that our body will follow.
Please say a special prayer to the family of my Aunt Kay who was laid to rest this past Saturday. Watching the highlights of her life in pictures was beautiful. She had an amazing life, was loved by many, and made a difference in the lives of all that she touched. Until we meet again. I love you Aunt Kay.
This is what my children so lovingly call each other. Arch Enemies.
And, yes, I realize this does not reflect positively on my parenting skills.
I hate cancer today as much as I hated it over two years ago when it penetrated itself into my life and the lives of my family.
Since then, it has taken several of my colleagues and one of my favorite rappers of all time, MCA of the Beastie Boys, at age 47!
Yes. I like rap. I realize it is hard to believe, but its true.
As a matter of fact, the only reason I tune into American Idol these days is because of Niki Minaj. "Wow Boo, that song was tappen!" The kids say I embarass them, when I say things like, "Yo, Yo, Baby Pop, What Up, and True dhat. And, God forbid if I get my groove on to a song by Lil Wayne, Pitbull, or Flo Rider while driving.
Hey, I'm sorry, rap is way better than country music. I actually heard a country song on the radio the other day, called, "I drank a beer with Jesus!" Really? Now, I can understand if it was titled, "I drank a glass of wine with Jesus." But a beer!
Sorry, I digress... as usual.
Dave's cancer continues to be inactive. Another words, he continues to be in complete response (remission) since finishing initial therapy at the end of 2010/beginning of 2011. He was in remission when he got the stem cell transplant in June of 2012, and it was, and continues to be, our hope that he will be in remission for a very long time. He still goes to the doctors monthly and has an infusion of zometa for his bones and is still fighting peripheral neurapathy caused by the cocktail of chemo that helped to save his life. Pain management will probably be something he has to deal with from now on. It's part of his new normal.
There has been so much new information and new drug therapies getting approval that are providing more and more options for multiple myeloma patients. It is amazing what is happening in the multiple myeloma community in terms of research.
I've learned more and more and have more and more questions I want answered.
The most interesting information that I've learned is in regard to Dave's abnormal chromosome (4;14) which makes him a high-risk patient. Before, it was thought that if you had any traces of this abnormal chromosome, or other high-risk deletions, you had a poor prognosis, i.e. the high-risk prognosis. Well, it has recently come to light that it is not the fact that you have the abnormal chromosome that makes your prognosis worse, but the amount of cells that are affected by the abnormal chromosome. So, my next question to Dave's doctor is, how much of this abnormal chromosome cells does Dave have?
The high-risk prognosis typically means that the patient doesn't stay in remission very long (Dave has been in remission for 2 years). Note: The average remission for a low-risk patient is 2-3 years. Also, high-risk patients don't respond as well to therapies found to work on low-risk patients. Dave, responded with the best response you can get from initial therapy and from a stem cell transplant!
If, or when, Dave does end remission (at this point there is no cure), he has so many options for continued therapy. There are so many new combinations of drugs that are proving to be very affective and even some combinations that are working on patients that had become refractory to other therapies.
What was once considered a terminal cancer is very close to becoming labeled a chronic illness. I really believe this will be the case in the very near future and that would mean a cure could be not far behind.
Sadly.
Dave has been wallowing in this cancer thing.
I mean, seriously, all he does is sit around a mope.
He doesn't even leave the house.
He makes sure that everyone knows he has CANCER!
NOT!
Reality.
Dave is now on a two-week cruise in the Orient, along with my mom, his brother Steve (and Jerri), and cousin Randy (and Sharon)...
After, spending Thankgiving in Costa Rica with my mom in November...
And, after, spending a long weekend with my husband Cory, and brothers Ben and Vern, in Washington in September.
Dave is living life.
Like there is no tomorrow.
He is loving his family.
Like he'll never see them again.
He is treating cancer.
Like it has no power.
Dave is a constant reminder to me on how unique we are. Statistics don't define us. Cancer does not define us. It is the ability of our human spirit to have hope, curiosity, and purpose. It is only when our spirit dies, that our body will follow.
Please say a special prayer to the family of my Aunt Kay who was laid to rest this past Saturday. Watching the highlights of her life in pictures was beautiful. She had an amazing life, was loved by many, and made a difference in the lives of all that she touched. Until we meet again. I love you Aunt Kay.
Subscribe to:
Posts (Atom)