Kissing This Blog Goodbye- May 5, 2017

Family and friends, ending this blog is another goodbye for me.

It is just another reminder that Dave is no longer here.  Having the blog meant we were still fighting. 

That he was still living.

When I found out Dave had cancer, I researched and read anything I could on multiple myeloma.  I followed a lot of other blogs from patients of MM and/or their caregivers.  One thing that always stood out to me would be the long duration between posts or no updated post at all.    Is this person in remission and has nothing new to update or did the person pass away?

Even though this wasn't the outcome I wanted, I do want MM patients who see this blog to know there was an ending.  I also want them to know there is a lot of hope for a cure.  I will be watching and cheering each of you on and will continue to support a cure for Multiple Myeloma. 

Writing has always been a passion of mine and therapeutic as well.  Blogging made me not feel so alone. 

I always wanted to be the strong one.  I never let my mom or Dave see me cry.   My goal was to make Dave laugh or provide information and support.  I was all business. 

But, I would cry.  I would cry at home.  I would cry at work.  I would cry every time I updated this blog.  I would cry after every hospital visit.

I cry now. 

It's been eight months since he passed and I still cry.....

I feel like purpose has been stripped from my life.  I feel an emptiness that used to be filled with hope and concentrated purpose.  Fighting for Dave gave me purpose.

I guess this would be considered similar to the empty-nest syndrome for many mothers.  My whole life revolved around multiple myeloma.  Way more than my mom or Dave ever knew.  Way more than Dave would have liked for me.

It was my way to control something I could not control.  Now it's gone. 

Dave is gone. 

Things that used to matter seem so insignificant to me now.

 I might be depressed.

If I pretend that he is not gone, just busy, it hurts less.  It's not like I saw or talked to him every single day. 

But I thought about him every single day. 

His essence and spirit is sprinkled all over my life and the lives of my children. 

My heart physically aches.  I guess that's where "they" came up with brokenhearted to describe a break up or death. 

I realize I'm not the only person on this earth that has lost someone.  But I feel like I am.  I know I'm not the only person mourning Dave.  But I feel like I am.

Everyone mourns differently. 

Some people want to deal with it head on.  Some people want to live in denial.  Some people want to curl up on a ball and cover themselves in the pain. 

I'm having a difficult time, honestly.  I've certainly have felt a lot of anxiety about getting together with family and friends outside of my immediate family.  I feel like I might cry and people won't understand why I'm not dealing with this better.  Why I'm not stronger.  Why I'm different.

I miss him. 

That part that I'm having the hardest time dealing with is that we didn't have that "final" conversation where you say goodbye. 

We didn't want to say goodbye.

We didn't want to believe that we were losing.

But, I needed that conversation with him.  I needed him to tell me everything was going to be okay.  For me to be strong.  And, that he would always be with me. 

But that would be admitting defeat.  That he was dying.   And Dave just couldn't do that. 

I knew he was dying.  I knew for a while because I tracked his numbers and could see that the cancer was taking over.  The day it really hit me was when mom and I took him to Stanford for the very last time.  He could barely walk.  We had to get a wheelchair to wheel him into the hospital.  While waiting for his appointment, he decided he wanted to walk.  It was painful to see this 62 year old, who has always been so full of life, look and walk like he was in his late 80's. 

When the doctor told us that the new regimen of chemo was not working, I new then.  But denial creeps in like a soft warm blanket that covers your body and offers comfort.  The doctor said we could try to add another chemo and see if that works, but I could tell from her eyes that she knew it wouldn't.

I knew.  The doctor knew.  But Dave seemed clueless.  His brain was not working well by this time and he was easily confused.  Perhaps, Dave knew, but didn't want to believe.  Why couldn't the doctor tell him?  Why couldn't I tell him? 

The weeks after Stanford were filled with doctor's appointments, chemo, hospital visits, and so many transfusions, we lost count.  My mom was by his side every step of the way.

A month after Dave died, Cory (my husband) had a medical situation that required him to go to the emergency room.  I sat with him for over 5 hours in a freezing hospital, in an uncomfortable chair, for what seemed like forever.

The whole time I was there, all I could think about way Dave and my Mom.  They spent so many hours in the hospital.  Too many to count.  I felt so much compassion for both of them!

The last several weeks of Dave's life was the most difficult time for all of us.  My mom had to singlehandedly take care of him day and night. Dave was becoming increasingly confused and my mom had to stay alert to make sure he didn't fall or get hurt somehow.  She barely got any sleep. 

I told my mom he was dying.  He thought he was going to beat it so she believed he would too.  I researched everything on the dying process.  I know that seems morbid, but knowledge is control for me. 

I needed to know what to expect, what to do, what it might look like, what we should do.  It was incredibly helpful knowing what to expect to some extent.

I needed to prepare my mom though.  She started getting more direct with the doctor until he confessed that things were not working and that he was basically staying alive by having all the transfusions. 

Dave was done being at the hospital and just wanted to be home.  Bless my mom's heart.  She had to be the one to sit down with Dave and tell him what no one else would.  Later that night, my mom called me over and her and Dave told me that he was no longer going to do anymore treatments.  I cried in Dave's arms. 

I felt like such a failure and kept telling him I was sorry.  I couldn't save him!  He just held me and cried.  Still, there was no acknowledgment from him of acceptance.  No goodbyes. 

The doctor had told us if we stopped treatment he would probably only live 4 days.  I didn't think this could be true.  We called hospice.  After the nurse assessed him, she privately told my mom he would probably have two weeks based on his condition.

Thankfully, my sister-in-law, Sara was over every day to help my mom.  She was such great support to both me and my mom and I will be forever grateful.  It was painful to see Dave face and it was equally painful to watch my mom try to care for him and stay strong when she herself was scared. 

Watching him die plays over and over in my head.  Watching him take his last breathe surrounded by those that loved him most has changed me.  I dream about Dave.  But in my dreams he is not alive,  his spirit still has Multiple Myeloma.    

I understand the concept of time heals.  I don't cry everyday any more. 

It really hit me about a month ago when I was a work and I walked across the parking lot to my office and my great staff and I was smiling.  It actually stopped me in my tracks.  The smile on my face quickly faded and I finished my walk back to my office with my head down.  I felt guilt.  Guilt that I could actually smile.  Guilt that my life continues even without him.

I know that life goes on.  It has to.  But I feel so different.  I feel a huge shift in my life.  I've become trapped in a small area of safe places.  I know I'm letting family and friends down.  It's so hard to dig yourself out of a hold of darkness when the person that brought so much light is no longer here. 

But each day I wake up, I take care of my family, I go to work.  I look forward to the day when I think of Dave and it doesn't hurt. 

My mom is now at their coastal home and Cory and I have purchased their home in Visalia.  I refused to think of anyone outside the family living there.  Dave is everywhere in the house.  His love for the house, his many special touches throughout the house makes me feel closer to him.

It is hard not having my mom down the street, but she always belonged by the beach and she has some loving friends taking good care of her.  We talk most days and have gone back and forth to see one another.   She misses Dave more and more each day. 

I've started and stopped writing this final blogs too many times to count.  But I'm determined to finish it. 

This is the end on Earth for Dave, but not for the many of you fighting and winning against this disease.    And to the many caregivers who fight along their loved one, you are not alone.  You are in this fight too and you need comfort and love too.

Hugs

Jeana

Dave Update-Obituary and Celebration Information

                   DAVID "DOC" ORLEY CALLAHAN                     

FEB 1, 1955 - FEB 24, 2017

Muhammad Ali said it best, “Float like a butterfly, sting like a bee.  His hands can’t touch what his eyes can’t see…”  

And for seven years, David Orley Callahan “DOC,” 62, of Visalia, CA floated like a butterfly and stung like a bee, fiercely fighting and defeating the greatest of opponents, multiple myeloma and parotid cancer. 

On Friday, February 24, 2017, surrounded by loved ones, David chose to lay down his gloves and go on the most beautiful and mysterious adventure of his lifetime. 

David was born on February 1, 1955 in Fresno, California.  Affectionately known as “the favorite,” David was the second youngest of four born to Glick and Edna Callahan.  A self-professed “mama’s boy,” nary a day went by that David didn’t call his beloved mother.

David graduated from Mount Whitney High School in Visalia, CA in 1973 where he earned both a high school diploma and a squad of life-long friends.    A free-spirit and risk-taker, David spent his early 20’s traveling and exploring the world in awed wonder of what life had in store for him. 

In 1985, David married Carolyn “Carol” Joyce Maness, his wife of 32 years.   It was on this magical day that a 28-year-old David was presented a dowry of three teens and a five-year-old.  Run, he should - but stay, he did.  

After working for years in the airlines business, David’s thirst for personal improvement and success led him to purchase Miracle Ear, a hearing aid business that he co-owned and operated with his close friend Dave Benson. 

David will be best known for his love of life, adventure, knowledge, and his genuine interest in every person that he encountered.  He will also be known for his love of the Lakers and Dodgers, golf, wacky dance moves, and his penchant for misplacing his wallet and car keys.

David is preceded in death by his father, Glick Callahan and younger brother, Jeffrey Callahan.  He is survived by his mother Edna Callahan of Visalia, CA; wife Carol Callahan of Visalia, CA; brother Steve Callahan of Visalia, CA; sister Linda Callahan of Visalia, CA; daughter Jeana Brooks of Visalia, CA; and sons Ben Lackey of Sedro Wooley, WA; Vern Lackey of Hanford, CA; and Jason Lackey of Vancouver, WA.  He also leaves his adored Aunt Wana and Uncle Clifford of Visalia, CA; countless cousins that he cherished; and numerous grandchildren and great-grandchildren in which he took great joy.

Known for being the life of the party, a celebration in his honor will take place at 2 p.m. on Saturday, March 4 at the Visalia Country Club.  In lieu of flowers, the family asks that you consider donations to the Multiple Myeloma Research Foundation. 

My mom's address is:

Carol Callahan
5819 W. Buena Vista
Visalia, CA  93291

Dave Update- February 23, 2017

Family & Friends,

This has been the hardest week of my life.

We met with Hospice on Tuesday. 

On Wednesday, my baby brother Ben flew in to see the man that raised him.

Probably for the last time. 

This morning he took a turn for the worse, or in some ways for the best.

He hasn't slept in weeks.  Because he was scared he wouldn't wake up. 

Mom and I spent a lot of time talking about how bad he needed to sleep- so she could sleep.   

This morning that changed.  Dave has entered the last stage.  After a few conscious moments, one of which he asked his son, "How are you?"- Dave has been sleeping.  Finally, he rests. 

He is not in pain.  We are in pain.  The hospice nurse said Dave probably only has a couple of days.

I'm in shock.  I knew this was coming, but I don't want to believe its really happening. 

I feel different.

Like I will never be the same.

I've changed.

I look at the world differently. 

Life will never be as bright, as adventurous, as intellectually stimulating. 

I don't know what else to say. 



  

Dave Update- February 19, 2017

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.

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

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 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