Hello family and friends, We took a couple of weeks break from our original stem cell transplant schedule so we could attend the multiple myeloma conference. More importantly though, Dave was hoping to get the pain he has been in under control before undergoing the grueling next several months. Unfortunately, the pain has continued to get worse! This has been a terrible blow to the exciting news of being in complete response. He is in more pain in remission that he was with cancer. I'm getting really frustrated because it seems that nothing is working and I could really use all of your positive prayer to get over this hurdle. I am so grateful that we got the response we got, but the drugs used to help him have in actuality hurt him in terms of quality of life.
Me, Dave, my mom, Cory, Aunt Wanna, and Clifford got together a couple weeks ago to go over all the information we learned at the conference and to discuss all our options. We all agreed that we probably should proceed with the stem cell transplant. This really wasn't an easy decision and the fact that Dave wanted us to be a part of his decision was a wonderful, memorable, blessed family moment. After the decision, we all joined hands and grandpa said the most beautiful, loving prayer I've ever heard. There really isn't anything like seeing the love of a mother and father for their son. It doesn't matter how old we get or our children get, they will always be our baby. I saw my grandma and grandpa loving their baby son in that moment and I will hold that memory in my heart forever.
Wednesday, mom and Dave will be in Standard for a few days getting blood work done, meeting with a pain managment specialist, getting the catherter placement inserted, and having a first round of chemo. He then heads back home where he will begin the neupogen shots. You can review the entire stem cell process by clicking on the February 8 blog update. The schedule is pretty much the same, but pushed back a couple of weeks. Most likely the actual transplant will occur mid to end May.
I want to thank everyone who has been so loving and helpful during this time. You truly learn who your real friends and family are when you are in need. I know my mom and Dave appreciate everyone's concern, phone calls, emails, and drop bys. I want to personally thank my closest friends: Cory, Donna, Michelle, and Sue who have supported me, prayed with me, listened to me vent, and hugged me when I cried. My relationship with Dave has grown so much over the last few months and I cherish our connection and our ability to express to each other what we feel. Every day should be that way, shouldn't it? We shouldn't let pride and fear stand in the way of truly connecting with people.
Please pray for my mom and Dave. Pray that God wraps his healing arms around Dave and gives him mercy from the pain he is enduring. I know Dear Lord that your are in control and it is you that we all need. Much Love, Jeana.
Monday, March 14, 2011
Wednesday, March 2, 2011
Dave Update- March 2, 2011
Jeana, Dave, Carol, and Cory at the MM Confernece in LA
No, they did not serve cocktails at the conference- we just enjoyed one the night before the event.
In order to go to the Multiple Myeloma conference, Dave had to cancel an appointment he had in Stanford for the start of the stem cell transplant process. It was important for him to attend the conference and Stanford felt there was no reason why he shouldn't or couldn't. I completly supported this idea because I really wanted Dave to meet Dr. Berenson, who was going to be one of the speakers at the conference.
I have been researching multiple myeloma from the day I found out Dave had it. I want to be armed with as much information as I can possible get so I can be a support system to him and my mom. In my research, Dr. Berenson kept popping up. I read everything I could find on him and I was just drawn to him in general. I don't know if it was: vibes, women's intuitition, or I'm just crazy.... but I felt something about him. When I found out he was going to be there, I wrote him a letter and let him know I was coming and that I would love to meet him. I received a call back from his office. I guess the doctor was flying in from Paris, but they told me that they would be sure to give him the letter before the conference. The caller also reminded me I was NOT a weirdo. In my letter, I told the doctor that I felt it was meant to be that he was speaking at the conference that I would be attending after I had been following his research all these months. I didn't want him to think I was some kind of stalker so I wrote, "I promise I am not a superstitous weirdo".
What is unique about Dr. Berenson is that he does not utilize stem cell trasnplants and a part of his practice. He relies solely on combinations of medications, individually tailored to the patient and closely monitored in amount and release time. There is a lot of provocative conversations going on about the benefit and necessity of a stem cell transplant in the year 2011. I must add though, the majority of doctors continue to believe that stem cell transplantation is a benefit and continues to be a part of their care plan for multiple myeloma patients.
I know, I know... I've always liked the bad boys, the black sheep, the Mavericks! I just can't help myself. I was so excited to hear him speak and find out the latest in Multiple Myeloma research. The Muliple Myeloma Research Foundation put on the event and it was well organized and along with Dr. Berenson, had three other highly regarded specialists in the area of multiple myeloma.
I would say over 250 were in attendance. I saw women, men, young, old, white, black. Cancer does not discriminate. I also saw young teens in attendance whose parent have the disease. I had the opportunity to talk to a husband whose wife was just diagnosed and we talked about her experience. I know that each of us at one point got to talk with someone and learn about their personal journey.
I really wanted to meet the doctor though. The thing is-- and this will probably shock you--I am terribly shy. I know what you are thinking, ya, right? Seriously, I am! I can talk to anyone for hours if they make the first move, but for me to go up and introduce myself.....ahhhhhhhhhhhhh. Sadly, Dave had to all but drag me to meet the doctor during break. Dave started talking and introduced us and said, "This is my daughter Jeana. She has been following your work for awhile, etc. etc. I can't remember most of what he said because I was getting nervous and anxious. The doctor looks and me and says, "Brooks?" I say, "yes". I manage to get one question in before he gets whisked away. Funny though, the very thing I wanted answered I got answered. I told him that Dave's doctor believe that he has to do a stem cell transplant immediately because he has the 4;14 abnomal chromosome. You see, the 4;14 chromomose is one of the most diffifcult to treat and makes Dave's cancer very agressive. The doctor tells me, "No we don't do stem cell transplants at my practice." and most importantly, he tells me, "4;14 is nothing, makes no differentce." I got this to mean that he didn't think just because Dave has 4;14 that stem cell transplant is his only option. I wish we had more time, but... there were so many others who wanted to ask questions as well. I wish I could have been more aggessive. It's like I froze. I acted like some love-struck teenager or even worse, some kind of multiple myeloma groupie! Urggggg! I vow to work on this! During the question answer section, one of the speakers was talking about a revolutionary medicine in trial for the chromosome 4;14. He asked if anyone in the audience has 4;14. We raised our hands. The president of the multiple myeloma foundation, Walter Capone, was sitting in front of us and gave Dave his card and asked him to contact him. This was great news for us- and something Dave's local doctor previously mentioned.
I think each of us left with even more questions. I believe that is what it should be when you are talking about your health and your life. You have to take control of the decisions that are going to be made and becoming informed on ALL options in a necessity. Dave's doctor still supports Dave going through with the stem cell transplant and Dave is still leaning that way, but also looking at other factors like: quality of life, time off work, and a million other things he could only share.
I left this weekend loving my husband more for joining me, loving my mom more for the fun and supportive person she is, and loving Dave more for allowing me to "see: him. And when I say "see" him I mean more than just seeing the good, but also letting me see him when he is in pain, when he is scared, when he is questioning, when he is frustrated, etc. I just love "seeing" all of him.
.
Friday, February 25, 2011
Dave's Update-February 25, 2011
Hi family and friends, just a very short update. We are in LA today with mom and Dave and will be attending a Multiple Myeloma conference tomorrow. I am excited and blessed to be able to meet others who are going through this journey. I am also excited to meet with some of the leading experts in Multiple Myeloma research. Dave is hanging in there. He had a doctor's appointment yesterday where they made some adjustment to his pain managment and did a more thorough body scan to see if anything is else causing his extreme discomfort. I will update you all on what we learned once we return. Thank you for everyone's concern and continue to pray for Dave's healing. We have had some bumps in the road, but with the love and support of family and friends, we will continue to battle this disease. I not only have dedicated my life to Christ, but I have dedicated my life to finding a cure for this disease. Much love. Jeana
Tuesday, February 8, 2011
Dave Update-February 8, 2011
Hello family and friends, sorry for the lapse in blogging, but we had some deciding to do. Stem cell transplant or no stem cell transplant, that is the question. The answer is...drum roll...Stem Cell Transplant! Since finding out Dave is in "Complete Response", Dave and I went about researching, ponding, questioning, is a stem cell transplant the best or only option? Well, 9 out of 10 doctor agree... okay, more like Dave's doctor believes... this is the best option for long term remission.
As you know, Dave has been experiencing Peripheal Neuropathy (nerve damage that causes extreme bone pain) and it has yet to subside. Peripheal Neuropathy is a side affect of one of the medications Dave was taking during chemo, called Velcade. This is common side affect that is supposed to go away after Velcade is stopped. Well, we all know Dave is not a "common" kind of guy, and the pain has worsened instead of gotten better! They have tried some pretty potent pain relievers, but they have only mildly made things better. Please pray for Dave to receive relief from this pain. He needs a break before we take on the next part of the MM fight.
We've been so lucky, luckier than most. Getting complete response at this stage is nothing short of a miracle and Dave is in the best place going into the stem cell transplant. Stanford is wasting no time in getting this process going. I've read through all the materials and frankly it is overwhelming. I broke down and cried, not because I'm scared that Dave won't come out of this in remission, but just over what my mom and Dave have to do and go through to get there. I get so angry some times. I mean really angry! Not at God- because I don't believe God zaps people. Just angry that Dave and my mom have to go through this. I hate cancer more than I've hated anything in my life. I just wish it would go away and things would be like they used to be. No, not like they used to be- better. Why can't we appreciate things before something like this happens and makes us appreciate things?
"S" (stem cell) day begins on February 14 and 15 with Dave and my mom traveling to Stanford to sign consent forms, have blood drawn, and attend classes on "the transplant". Wow, what a romantic way to spend Valentines Day! Nothing says "I love you" like learning how to take care of your catherter and self inject yourself... But, in reality...what says "I love you" more than a commitment to one another and the vows that were said, "I will love you in sickness and in health".
Timeline Summary:
End of February: Catherter Placement (tube is inserted into a large vein in chest) Done in Stanford
Beginning of March: Mobilization (moving the stem cells out of the bone marrow and into the blood for collection). This is accomplished by administering chemotherapy (high dose) and a growth factor (Neupogen) to stimulate the recovery of the white blood cells. This is as an out patient. Dave will inject himself with Neupogen.
Mid March: Apheresis (the collection of the stem cells from the blood and then froze. This occurs at the hospital (Stanford) and can take 1-5 days.
Beginning of April: Second mobilization (more chemo and Neupogen) at home
Begining to mid April: Second Apheresis (stem cells collected, then froze) 1-5 days in Stanford
Mid to end of April: Test, tests, and more tests. Last week in April Dave will be staying local to receive two large doses of chemo in preparation for stem cell transplant.
Beginning of May: Stem cell transplant. The process is very similar to a blood transfusion. Dave and Mom will have to live locally in Stanford possibly until the end of May for observation.
Side effect vary by person. Nausea, diarreas, hair lose, skin rash, vomitting are some possibilities. Please pray that Dave has an easy reaction to the high dose chemotherapy and that no infections enter his body. Dave will be very suseptible to infection and will have to wear a mask, adhere to a special diet, hand washing, special mouth care treatments, and avoid ill people.
We would appreciate everyone's prayers during this time. Please pray for God's loving presence to be with Dave and Mom. Pray for my mom and Dave's patients and strength as they will be leaving work, home, and family often over the next four months. Please feel free to call me at (559) 972-5754 or email me at anytime jeanabrks@yahoo.com during this time with questions.
As you know, Dave has been experiencing Peripheal Neuropathy (nerve damage that causes extreme bone pain) and it has yet to subside. Peripheal Neuropathy is a side affect of one of the medications Dave was taking during chemo, called Velcade. This is common side affect that is supposed to go away after Velcade is stopped. Well, we all know Dave is not a "common" kind of guy, and the pain has worsened instead of gotten better! They have tried some pretty potent pain relievers, but they have only mildly made things better. Please pray for Dave to receive relief from this pain. He needs a break before we take on the next part of the MM fight.
We've been so lucky, luckier than most. Getting complete response at this stage is nothing short of a miracle and Dave is in the best place going into the stem cell transplant. Stanford is wasting no time in getting this process going. I've read through all the materials and frankly it is overwhelming. I broke down and cried, not because I'm scared that Dave won't come out of this in remission, but just over what my mom and Dave have to do and go through to get there. I get so angry some times. I mean really angry! Not at God- because I don't believe God zaps people. Just angry that Dave and my mom have to go through this. I hate cancer more than I've hated anything in my life. I just wish it would go away and things would be like they used to be. No, not like they used to be- better. Why can't we appreciate things before something like this happens and makes us appreciate things?
"S" (stem cell) day begins on February 14 and 15 with Dave and my mom traveling to Stanford to sign consent forms, have blood drawn, and attend classes on "the transplant". Wow, what a romantic way to spend Valentines Day! Nothing says "I love you" like learning how to take care of your catherter and self inject yourself... But, in reality...what says "I love you" more than a commitment to one another and the vows that were said, "I will love you in sickness and in health".
Timeline Summary:
End of February: Catherter Placement (tube is inserted into a large vein in chest) Done in Stanford
Beginning of March: Mobilization (moving the stem cells out of the bone marrow and into the blood for collection). This is accomplished by administering chemotherapy (high dose) and a growth factor (Neupogen) to stimulate the recovery of the white blood cells. This is as an out patient. Dave will inject himself with Neupogen.
Mid March: Apheresis (the collection of the stem cells from the blood and then froze. This occurs at the hospital (Stanford) and can take 1-5 days.
Beginning of April: Second mobilization (more chemo and Neupogen) at home
Begining to mid April: Second Apheresis (stem cells collected, then froze) 1-5 days in Stanford
Mid to end of April: Test, tests, and more tests. Last week in April Dave will be staying local to receive two large doses of chemo in preparation for stem cell transplant.
Beginning of May: Stem cell transplant. The process is very similar to a blood transfusion. Dave and Mom will have to live locally in Stanford possibly until the end of May for observation.
Side effect vary by person. Nausea, diarreas, hair lose, skin rash, vomitting are some possibilities. Please pray that Dave has an easy reaction to the high dose chemotherapy and that no infections enter his body. Dave will be very suseptible to infection and will have to wear a mask, adhere to a special diet, hand washing, special mouth care treatments, and avoid ill people.
We would appreciate everyone's prayers during this time. Please pray for God's loving presence to be with Dave and Mom. Pray for my mom and Dave's patients and strength as they will be leaving work, home, and family often over the next four months. Please feel free to call me at (559) 972-5754 or email me at anytime jeanabrks@yahoo.com during this time with questions.
Thursday, January 20, 2011
Date Udate- January 20, 2011
Hi everyone. I've got some really good news to share. We got the results back from Dave's bone marrow extraction and the results show zero multiple myeloma cells!!! When Dave was diagnosed in September, he had 80% presence of multiple myeloma cells. The doctor is waiting back for one more test to determine 100% Dave is in Complete Response, but it looks really good so far. With multiple myeloma, there is no cure at this time so they don't define where Dave is at this point as "remission". But Complete Response would be the "remission" of Multiple Myeloma and is truly the best scenario we can be at!
I know I'm constantly placing my own spirtitual beliefs in this blog, but I believe so much with all my heart that this is by the grace of God. I've prayed every night for this specific outcome, that there would be no cancer in Dave's bone marrow and that is where we are. I know that this is solely by the grace of God and I constantly remind myself to praise him when things are good (like now) and when they are bad. This is our first victory in this fight!!!
I will let you know a definiitve when we get the rest of the tests back, but keep those prayers coming because they are working! So, what is next? This is up to Dave obviously. He is in his 6th round of chemo and is having a rough batch of it. This round has really affected him and he is experiencing a lot of discomfort. I knew it was too good to be true that he was responded that well through 5 rounds with few side affects. But thank you God for giving us that. The doctor did mention he would check with Standford about the necessity of completing these last round due to his extraordinary response to initial therapy so far. From everything I've read, the pain and side affects should end as soon as he completes chemo. So, lets hope that he can end chemo early...
Typically, through my research, patient choose stem cell transplantation after intitial therapy. There are different ideas on this and Dave is looking into it. But, if he choses to go this route, research shows that high rates of Complete Response after induction (which is where he is) often translates into high Complete Response Rates after trasnplantation and prolonged event-free survival.
Treatmentment, pills, chemotherapy, decisions all place a lot of pressure and stress on any indiviidual. Dave has been amazing and we need to continue to pray for Dave strength, hope, will, and spirit to get him in fighting shape for whatever is next. God is good.
I know I'm constantly placing my own spirtitual beliefs in this blog, but I believe so much with all my heart that this is by the grace of God. I've prayed every night for this specific outcome, that there would be no cancer in Dave's bone marrow and that is where we are. I know that this is solely by the grace of God and I constantly remind myself to praise him when things are good (like now) and when they are bad. This is our first victory in this fight!!!
I will let you know a definiitve when we get the rest of the tests back, but keep those prayers coming because they are working! So, what is next? This is up to Dave obviously. He is in his 6th round of chemo and is having a rough batch of it. This round has really affected him and he is experiencing a lot of discomfort. I knew it was too good to be true that he was responded that well through 5 rounds with few side affects. But thank you God for giving us that. The doctor did mention he would check with Standford about the necessity of completing these last round due to his extraordinary response to initial therapy so far. From everything I've read, the pain and side affects should end as soon as he completes chemo. So, lets hope that he can end chemo early...
Typically, through my research, patient choose stem cell transplantation after intitial therapy. There are different ideas on this and Dave is looking into it. But, if he choses to go this route, research shows that high rates of Complete Response after induction (which is where he is) often translates into high Complete Response Rates after trasnplantation and prolonged event-free survival.
Treatmentment, pills, chemotherapy, decisions all place a lot of pressure and stress on any indiviidual. Dave has been amazing and we need to continue to pray for Dave strength, hope, will, and spirit to get him in fighting shape for whatever is next. God is good.
Monday, January 17, 2011
Dave Update-January 17, 2011
Hi family and friends, I hope everyone is having a great start to a new year. With a new year, there is a renewed hope and a feeling of a fresh start. For Dave, his new year starts off with tests, tests, and more test. Dave got the results back from his body scan and there was no real changes in his lesions. I give praise to God that there were no additional lesions and his current lesions are about the same. Eventually, I'm hoping that the lesions will shrink. This is our goal. Last Thursday, Dave had his bone marrow tested (See definition of bone marrow biopsy below) and we hope to get the results back soon. His blood count continues to be normal. Of course this is Dave's normal, meaning normal and not unusual for a patient of MM. I pray daily that the bone marrow results show that we a "kicking" butt on those annoying myeloma cells.
Bone marrow biopsy is performed to assess the percentage of myeloma cells in the bone marrow and to determine how much they differ from normal plasma cells. Special testing is done on the bone marrow biopsy sample to assess prognosis based on chromosomal abnormalities.
Dave has been experiencing some body pain due to peripheral neuropathy which we believe is a side affect to one of medications Dave is on called Velcade Dex. Neropathy is the tingling and pain from nerve damaged caused by the side of affect of the drug. Dave has been experiencing this in his knees and legs. The doctors have given him some pain pills to help. Being the super hero that he is, he continues to work and even drove to LA for a work-related training the day of his bone marrow biopsy. Okay, Dave, we know, we know....You are the man!!!
Please keep the prayers coming. Can you read the prayer at the bottom of this blog. This is my specific prayer for Dave and I would love it if you could join in with me....
Bone marrow biopsy is performed to assess the percentage of myeloma cells in the bone marrow and to determine how much they differ from normal plasma cells. Special testing is done on the bone marrow biopsy sample to assess prognosis based on chromosomal abnormalities.
Dave has been experiencing some body pain due to peripheral neuropathy which we believe is a side affect to one of medications Dave is on called Velcade Dex. Neropathy is the tingling and pain from nerve damaged caused by the side of affect of the drug. Dave has been experiencing this in his knees and legs. The doctors have given him some pain pills to help. Being the super hero that he is, he continues to work and even drove to LA for a work-related training the day of his bone marrow biopsy. Okay, Dave, we know, we know....You are the man!!!
Please keep the prayers coming. Can you read the prayer at the bottom of this blog. This is my specific prayer for Dave and I would love it if you could join in with me....
Tuesday, January 4, 2011
Dave Update-January 5, 2011
We had a great New Year's Eve and a last night with my baby brother Ben and his family before they headed back to Washington. We listened to music and danced around to Squeeze Box while the kids ran through the house chasing each other. Do you ever have those moments of complete happiness and contentment that you wish you could bottle up? Watching my mom and Dave dance and seeing everyone laughing and enjoying each other was one of those moments for me.
In terms of Dave's health, he has been experiencing some bone pain lately. This is not unusal at all due to the fact that he has (osteolytic) lesions on both legs, both arms, and his scull. 70% of MM patients have lesions. The presence of more than one lesion is why they call this cancer "multiple" myeloma. The unusal part is that Dave hasn't had much bone pain since being diagnosed. Bone pain is a very common symptom and the doctors are putting him on calcuim to strengthen his bones and he will also have a monthly treatment specifically aimed at treating and strengthening his bones.
Monday was a full day at the doctors for Dave. He had his regular chemo treatment, his replacement immunoglobulin therapy treatment, as well as a battery of other tests, including a full skeletal scan to check on his bones. Dave has a full week off until next Thursday when he will have chemo and a bone marrow biopsy. This is very important and is the best overall picture we will get on how the chemo is killing the cancerous plasma cells (myeloma cell) found in his bone marrow. And this is where I need your help. Can you please say a special, specific prayer for Dave that his bone marrow test will come back as showing NO cancer!! We need to see as little myeloma cells as possible to know we are on the right track and ready to make the next move.
Much Love
Jeana
 |
| Ben, Granpa, Grandma, and Dave (New Year's Eve) |
Happy New Year to family and friends. I can imagine everyone is making some kind of resolution for 2011 and I'm no different. My resolution is to love more, appreciate more, and pray more. My prayer for 2011 is that God will heal Dave's body and provide a loving embrace around Dave, my mom, grandma, and grandpa.
We had a great New Year's Eve and a last night with my baby brother Ben and his family before they headed back to Washington. We listened to music and danced around to Squeeze Box while the kids ran through the house chasing each other. Do you ever have those moments of complete happiness and contentment that you wish you could bottle up? Watching my mom and Dave dance and seeing everyone laughing and enjoying each other was one of those moments for me.
In terms of Dave's health, he has been experiencing some bone pain lately. This is not unusal at all due to the fact that he has (osteolytic) lesions on both legs, both arms, and his scull. 70% of MM patients have lesions. The presence of more than one lesion is why they call this cancer "multiple" myeloma. The unusal part is that Dave hasn't had much bone pain since being diagnosed. Bone pain is a very common symptom and the doctors are putting him on calcuim to strengthen his bones and he will also have a monthly treatment specifically aimed at treating and strengthening his bones.
Monday was a full day at the doctors for Dave. He had his regular chemo treatment, his replacement immunoglobulin therapy treatment, as well as a battery of other tests, including a full skeletal scan to check on his bones. Dave has a full week off until next Thursday when he will have chemo and a bone marrow biopsy. This is very important and is the best overall picture we will get on how the chemo is killing the cancerous plasma cells (myeloma cell) found in his bone marrow. And this is where I need your help. Can you please say a special, specific prayer for Dave that his bone marrow test will come back as showing NO cancer!! We need to see as little myeloma cells as possible to know we are on the right track and ready to make the next move.
Much Love
Jeana
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