Dave Update-March 29, 2011

Hello all, as quickly as they left to Stanford, they just as quickly are on the return.  Dave had collection most of the morning and was able to collect enough stem cells in one day to be released!  Typically, it takes between 1-5 days to collect, but Dave being the overachiever that he is did it in one!  This is great news because he will have a full two weeks off of everything before he reports back to Stanford on April 14 for round two.  Dave has hit Carl's Jr., Jack in the Box, and the Cheesecake Factory since yesterday!  Who knows what he'll eat on the way home.  We take the taste of food and other simple pleasures for granted don't we. 

Score:  Dave-1  Cancer- 0

Dave Update-March 28, 2011

Hello family and friends, just a short update on Dave.  After a difficult last week, things were starting to turn around for Dave by this weekend.  Friday, Saturday, and Sunday he didn't have to be hooked up to a IV for dehydration and he started getting some of his appetite back.  On Sunday his white blood count started to rise finally.  The doctors are able to determine if he is ready for stem cell collection by the level of his white blood cells.  Well, this morning when Dave and my mom reported to their daily doctor's appointment, Dave received a call from Stanford stating he was ready (based on the blood draws Dave's doctor has been forwarding to Stanford) for stem cell collection.  As I type, my parents are on their way to Stanford. Talk about no notice.  They quickly rushed home to pack and headed out.   If they arrive before 5 p.m. Dave will start with the preliminary testing they have to do before collection.  If not, he will report early tomorrow morning for testing (about 3 hours worth) and then they will hopefully begin stem cell collection.  The collection can take from 1 to 5 days.  The good news is that the doctor gave Dave the okay to eat whatever he wants.  He has been on a very strict, specific diet so he is looking forward to some old fashion comfort food.  I think he has Carl's Jr. in his immediate future.   Dave sounded great on the phone.  I think they are excited to get Step 1 completed and they will have about a week in a half of pure freedom before having to repeat this whole thing over again.  Obviously, Dave is not excited about that because he knows what a difficult time he had with the first round of chemo.  On the hair front, he hasn't lost any yet.  Maybe when you don't have much to lose, you get a reprieve.  Who knows, maybe the next round.  Sorry for the poor writing, but I'm on my lunch hour and wanted to get you updated. 

On a separate note for those who follow for research purposes.  Some did not know this, but Geraldine Ferraro, who passed away last week actually had Multiple Myeloma.  She had it for over 12 years and had it long before all of the advancements is medicine were made available to Multiple Myeloma patients today.  I think for us that research and follow Multiple Myeloma it is upsetting that they say she had a "blood cancer".  The difficulty in finding a cure and getting support for MM is that it isn't a well known cancer.  Geraldine Ferraro was actively involved in the Multiple Myeloma Foundation and was a honary chair of their board of directors.  In addition, she did much to raise awareness about the disease and went before Congress to do so! 

If you are interested in learning more about her story, please click on the following links:

http://www.cnn.com/2011/POLITICS/03/26/obit.geraldine.ferraro/index.html?hpt=T1&iref=BN1

http://www.dana-farber.org/pat/patientprofiles/firstperson/geraldineferraro.asp

Dave Update- March 22, 2011

Hi family and friends, just a short update.  Dave is doing better than yesterday when he felt like he was dying.  Ends up, he really could have died if my mom didn't take him in when she did.  The doctor said if she waited much longer she would have been taking him via an ambulance to the emergency room due to kidney failure.  Thank you Lord for guiding my mom to the doctors.  Dave spend most of the day at the doctors yesterday and is there now getting IV fluids for dehydration and they are helping him with all his medications, including anti-nausea medicine.  He is feeling some bone pain due to the growth factor shots, which is to be expected.  They gave him morphine yesterday to calm him from the pain.  Today, he still isn't eating (probably fear of throwing it up).  I am thankful that Dave has a wonderful Oncologist that is taking care of him.  He stated that Dave has 7 times the norm amount of chemo than he gives his patients.  This is expected because the chemo is to completly demolish the cancer cells before collection.  What angers me is why the heck they released him after this amount of chemo.  They should have kept him in the hospital under observation for a couple of days.  Oh, let me at them..... !

Dave Update- Part II-March 21, 2011

I just spoke with my mom to check on Dave.  She said she took him into his doctor's this morning because he was really sick.  He hasn't been able to hold anything down, including his medication.  He will be at the doctors most of the day.  He is extremely dehydrated so they hooked him up to an IV.  The doctor is closely monitoring him and they are giving him medication for the nausea.  He is scared.  My mom is scared.  I am scared.  The doctor's and nurses and all the material my mom and I have read state this is to be expected.  Try telling that to the guy who is suffering.  Urggggggggggggggggggggggggggggggggg!

Dave Update-March 21, 2011

Hello family and friends, just a short update on Dave.  Dave was released from the hospital in Stanford on Saturday afternoon.  He had his hard-core chemo on Friday and they kept him overnight.  He text me that morning that he was feeling surprisingly good, but unfortunately that did not last long.  Dave and my mom thought he was doing well enough to start heading home after being released.  It was not too long into the drive that Dave started to get violently sick.  It was raining hard and my mom was attempting to get home and worrying about Dave at the same time.  There was a second there that they thought they'd have to take him to the emergency room.  Thankfully they made it home without having to make an emergency stop.  Dave has been extremely sick ever since.  Burning through his body, nausea, and other extreme flu-like symptoms.  He also threw up for the first time last night after eating a bit of food. 

Dave was sleeping when I went to visit last night, which is a good thing.  His neurapathy hasn't been as bad either since the chemo.  He hasn't had to take as many pain pills.  We are not sure if it is actually getting better, or if he is in so much other pain, that concentrating on the nearapathy has lost its muster. 
Obviously, his spirits are very low and this can all seems too much to bear.  My mom is a "ROCK" though.  Talk about an amazing women.  This lady does not get enough credit for the amazing care taking she is doing.  I've learned a lot about my mom through this experience.  She is stronger than I ever gave her credit.  I'm not saying this is easy on her because it is not.  But, she stays positive for Dave and lifts him up when he is sad and tells him to "buck up" when he feels like everything is too much.  If you could see all she has to do in a day it would blow you away.  She has memorized all his medications (and there are tons!) and knows exactly which one he needs to take and when.  She has educated herself on everything so she knows exactly what to expect every step of the way.  Anyone that knows me, knows that I am a hopeless romantic, I will repeat, I am a hopeless romantic and watching my mom take care of my dad has given me a new view on what love and commitment really looks like. 

    Please feel free to email and write Dave and my mom.  I know that all your positive energy and prayers will help him get through this rough patch.  Much love, Jeana

Dave Update: March 17, 2011

Happy St. Patrick's Day to all and a Happy Birthday to my sister-in-law Erika!  I hope everyone gets the opportunity to enjoy some green beer, corned beef and cabbage, or whatever Irish tradition you might have in store.  March is also Multiple Myeloma Awareness Month.   If you would like to make a donation on Dave's behalf, please click on the following link https://online.myeloma.org/NetCommunity/SSLPage.aspx?pid=285.  Donations go to finding a cure for multiple myeloma.

As I mentioned in my previous update, mom and Dave are in Stanford.  This morning Dave had a catheter placement which is an in/out procedure whereas the surgically place a catheter in his chest area.  This is where they will harvest the stem cells from.  Dave emailed me not to long ago that all went well!  He met with a pain mamangement specialist and they have recommended increasing his neuropathy medicine (Duh!) and looking at some long term solutions for managing Dave's pain.  Seriously, as much as he'd like, he can not live in the 60's forever (wink, wink).   Tomorrow, Dave will go in for some hard core chemo and will have to stay overnight.  He will then return home sometime Saturday for mobilization.  We are lucky to have wonderful family in the area who have allowed my mom and Dave to stay with them.  Thank you Pam and Happy Belated Birthday to you!  Her birthday was yesterday.

Following his return on Saturday from the chemo, Dave will give himself daily injections of a growth factor.  Dave will have daily blood work done at his local oncologist to determine when he will be ready to head back to Stanford for step 2- the collection process.  Collection doesn't typically occur until 10-14 after chemo.  It is during this two week period that Dave's white cells and platelets may be very low, and he is at significant risk for infection.  He will be required to wear a mask, be on a special diet, etc. 

Feel free to call before visiting during this time and just be sure to stay clear if you have any kind of illness symptoms. 

Dave has been having fun looking a pictures lately, so I thought it would be fun to start a photo gallery.  If you have any photos of Dave from he youth or your time with him, please email them to me at jeanabrks@yahoo.com.   Take a look at these beauties:  Maybe someone can help me with dates:

Dave (far left), Dave Crow (third from left), and Pat (fifth from left)

Clockwise:  Dave, Carol, Steve, Jerri, and Carlene

This is when my mom and Dave were dating (tee, hee)

Dave and Carol (1988-89?) from the look of my mom's hair

Dave Update- March 14, 2011

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.

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.

Hello family and friends, before telling you about the Multiple Myeloma conference we attended over the weekend I wanted to give you an update on Dave's overall health.  As you know, Dave has been experiencing a lot of pain (constant and very uncomfortable).  Most likely the pain is due to peripheral neuropathy and his doctor has had to try multiple medications to try an alleviate some of this pain.  Last week, Dave and my mom communicated to the nurse about the type of pain Dave is having in his hips, leg, and lower back.  The nurse questioned if there might be more to this than peripheral neuropathy.  Peripheral neuropathy typically forms in the hands and feet.  The nurse contacted the doctor who suggested an MRI.  No problem, right?   Unfortunately, getting an MRI is a problem for Dave due to a Stapedectomy he had done many, many years ago.  This is a surgical procedure done to the middle ear to improve hearing.  The piston-like prothesis that is placed in the ear is where our problem lies.  I guess this device, in combination with the MRI, can cause permanent hearing loss.  Dave was desperate enough due to the pain to take a chance, but the doctor decided to do a different scan that should get a better picture of what is going on.  The results show a little bit of a pinched nerve, but nothing that would cause the pain he is going through.  The doctor has changed his medication to a pain patch, upped his bone strengthening medicine, and will continue to monitor Dave's pain.  In terms of his numbers, everything looks real good.  He is still in complete response. 

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.
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