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
Saturday, January 28, 2017
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
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