What Will You Gain?...

The past few days I've continued to think about the Special K advertising campaign that says "What will you gain when you lose?"  It sounds ridiculous that with all the support Brad, Avery and I have had, I feel like I need to put extra time focusing on this campaign to lift my spirits and think about the big picture of what our family is gaining during Brad's bone marrow transplant process. 

Today is Day -6.  If you're unfamiliar with how a transplant works, the days start out negative, counting down the number of days of conditioning treatment a patient has before receiving new, healthy stem cells on Day 0.  Brad started off at Day -8.  Today begins the transplant process for Brad's brother Chad.  For the next 5 days, Chad will go to the transplant clinic to get a Neupogen/Neulasta shot to help him produce the extra white blood cells needed to help make this transplant a success.  On Monday, Chad will donate his cells in a process that will take anywhere from 6-8 hours.  If he's able to donate enough on Monday, Brad will receive them on Tuesday, which is predicted as Day 0 for him.  Yep, May 6th is Brad's anticipated re-birthday and we need him to healthfully get to +100 days, which are the most critical days for engraftment of the new cells in his marrow.

Brad has had 3 radiation treatments already since Monday night and is beginning to feel the side effects.  He has started to lose his taste and says his throat feels like it's getting smaller.  Hearing him say this is confirmation he's likely beginning to develop the anticipated mouth/throat sores that will continue to get worse over the next several days before he begins chemo on Saturday.

While I know this process is a grueling one and I'm trying to be strong, I can't help but feel so weak and helpless right now.  I want to be present every second Brad's in the hospital, but know that's impossible.  I feel like I've "lost" him, our son Avery, our dog Max, our friends, our church, our home...you know...everything that's comfortable and familiar.  The reality is, nearly all of those things are even more present than ever before.  I keep telling myself that this is a temporary situation and I need to stop feeling so emotional about it.  Brad has been fighting this fight for 4 1/2 years and this transplant is his chance to stop fighting.  Certainly, I can do anything for 100 days, particularly for the man I love most in this world.

Since Brad's diagnosis, my faith has continued to grow and become stronger, a journey that is reminding me daily of God's grace.  I think about so many decisions I made when I was younger that I wish I could relive and have a "do over."  As I have continued to think about what I'm losing to gain, I've also been thinking about what He lost so we could gain and am reminded of John 3:16  "For God so loved the world that he gave his only begotten son, that whosoever believes in him should not perish, but have eternal life." 

Thank you Lord for all the blessings You present before me every day.  Even when things are tough, I know Your hand is on my family and we are being protected by You during this storm.  I ask You to calm my anxious heart and give me strength to have faith and hope in this process as you heal Brad.  Continue to watch over Avery and show Your presence while we are away.  I'm asking all this in Your name.  Amen.

+100 days.  I've got this.  We've got this. What are you gaining on the days you feel like you're losing?

Blessings,
Sandy

p.s. If you're looking to help support my Relay For Life goal of selling 100 luminary bags, each one representing the 100 days of good health for Brad, click HERE.  Your bag will be displayed at the Roanoke Relay For Life event on Friday, May 16th.  Each bag is only $10 and is a tax deductible donation.  So far, 58 bags have been purchased!!  Help me light up the track at Northside High School and raise money for the American Cancer Society's fight against cancer.  Thank you for considering a donation!

That's What Faith Can Do...

Have you ever had the feeling that you're receiving the same message over and over?  It can be as simple as a tugging at your heart to go out and do something, a phrase or bible verse that keeps popping up in places you wouldn't expect it or turning on the radio and hearing the song?  You know the song that has become a cornerstone in your life and seems to present itself at life's pivotal moments?  Since Brad's cancer journey began in December of 2009, that song has been the Kutless song, That's What Faith Can Do.  If you're not familiar with it, listen to it here: 

https://www.youtube.com/watch?v=WTNBWv33-QI

I remember shortly after Brad's diagnosis, changing the radio station from my normal country music station to our local Christian station and this was the song playing on the radio.  It hit me in the heart so much I had to pull off the road because I couldn't stop sobbing.  For us, this song has certainly become the song and I haven't changed the radio station since. 

Time has come and gone so quickly since my last blog entry in January after sharing the news that Brad will be having a bone marrow transplant due to another relapse.  Each successive return of this horrible disease has become significantly more aggressive and it's really the only option remaining for a potentially cancer free life. 

Since January, Brad has gone through chemo here in Roanoke to put his cancer into remission in order to take the steps necessary to push us forward to transplant.  On Monday, April 7th, we received the news we've been waiting for.  Brad's treatments were successful and he is currently showing no activity so off to transplant we go. 

On Monday we returned to Duke for pre-transplant work-up.  Brad and his brother Chad (who's his donor) spent the day being poked, prodded, x-rayed and talked to about the upcoming procedure.  As a complete side note, Chad has done an amazing job of caring for his and Brad's soon to be marrow.  We like to refer to him as Brad's "marrow daddy".  Although it took us by surprise, the date for the transplant was set and we officially head to Duke on April 27th.  Nine days from today.  Yep.  Nine days from today.  We'll get checked into the hotel and Brad will be in surgery at 7:00am on the 28th to get his Hickman catheter installed and his existing port removed, with his intense radiation beginning the same day.  Durham, NC; our new home for at least 100 days.

When we left Duke on Monday and were heading back home, Brad stopped at a gas station so we could grab a couple drinks and a snack.  When I returned to the car after a very full day, guess what was playing on the radio?  You guessed it!  The song.  I'm not gonna lie, I'm scared to death.  I repeatedly run the statistics and success rates through my head and then I counterbalance it with the statistics presented if Brad doesn't have the transplant.  It's an easy decision and I have faith that the God I serve has a plan for Brad and our family and that this journey is a destination yet to be discovered.  I honestly feel like it would take about a million blog entries to fully explain how I'm feeling about all the thoughts and emotions that incessantly run through my head.  Instead of writing all those blogs though, for now, I'm just going to have faith.  Gotta run...there's a song I'm dying to hear.

Hugs,

Sandy

What is a Bone Marrow Transplant?

You know, the reality is, we spend so much of our time talking about Brad's BMT, that sometimes we forget others haven't been planning for this event like we have for the past 4+ years.  If you haven't followed our blog from the beginning when Brad was diagnosed in 2009, he had extensive cancer throughout his body, similar to what we're seeing now.  Dr. Fintel was pretty confident we would see the cancer in his bone marrow and that we would likely be moving forward with a transplant (which we soon discovered other treatment options would be tried first).  In preparation for a possible transplant, Brad's 3 brothers were tested to see if they were a match.  It turns out that Brad's fraternal twin brother Chad was (is) a match, which wasn't a guarantee since they're not identical twins.  It has been a HUGE blessing for us that we have known for the past several years, that when God's timing was right, we had a donor on the sidelines, unlike so many others who have to agonize whether a match exists for their loved one.

Brad will be having what's called a myeloablative allogeneic transplant.  The "myeloablative" word refers to the hospitalized chemotherapy and/or radiation combination Brad will receive when he first arrives to Duke, completely eliminating his body's ability to make any blood cells.  The "allogeneic" word is the type of transplant, which in this case indicates that Brad has a donor and is not using his own harvested cells in hopes of becoming cancer free.  I keep telling Brad he needs to send Chad a big roll of bubble wrap to protect himself up until transplant!!

For Chad, the donation process, while time intensive for him, is an outpatient procedure.  A couple weeks prior to transplant, Chad will travel to Duke for a day of tests and blood donation.  Two weeks later, he'll return for a one week stay and he'll have daily visits to the transplant center where they'll be harvesting his blood cells in preparation for Brad to receive them.  We need to think of a really phenomenal way to say thank you to Chad and his family!  Really, how many times can somebody say they've saved a life??  Chad, you have NO idea how thankful we are to you and Lisa and this truly wonderful gift you are providing.

For Brad on the other hand, this is where many of his/our life changes begin.  At the point Brad is hospitalized to begin the intense chemo and radiation, he'll be hospitalized in an ICU environment for approximately 30 days.  Because the chemo is so intense and as indicated above, completely wipes out Brad's ability to make its own blood cells, Brad will have zero immune system. The slightest cough, germs, anything of the sort, can be deadly to him, which is why his environment and his visitors will be so restricted.  It's strange to think about, but Brad's immune system will be likened to that of a newborn baby.  Brad will even have to have his childhood vaccinations all over again, once his transplant oncologist indicates it's time to do so.  The actual bone marrow transplant and the placement of cells into Brad is a quite simple process.  Once Chad's cells are placed into Brad's body, they'll get settled into the marrow areas (where the good and bad cells were killed from the chemo) and begin to regenerate themselves.  Is the transplant a guarantee that Brad's cancer will be gone?  No, there's no guarantee, but this is the only hope we have that it could be and we're banking on that to pull us through!

Once Brad is released from in patient care, we'll continue to live at Duke for a couple of months so Brad can have tests and blood drawn daily.  Brad has to be within 5 miles of the hospital for any potential emergency that could arise, which can happen easily since his immune system will be severely weakened. Although the first full year after a transplant is challenging for most, the first 100 days are the most critical for transplant patients and Brad will be monitored closely and tested often.

We know that there are lots of tests and procedures coming before we continue to move forward and we couldn't be more blessed with our cheering section of family and friends lifting us up.  You know, the reality of all of this is that right now, as I sit here today and in this moment, I'm more excited for this process, than afraid.  I'm excited about the opportunity for a new beginning.  I'm excited about the potential for our family to live cancer free.  I'm excited for my husband to start his life "over" and for us to move beyond cancer.  Lately, it seems like everywhere I turn I'm seeing the exact same bible verse (no less than 5 times this past week - it's like it's hitting me in the head!) and I want to share it with you:

Isaiah 41:10
Do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.

It's amazing how the right words, can make an impact at the right time.  Here's hoping you hear the words you're looking for this week!!

Love,
Sandy

Happy New Fear...

Wow and we're sorry is really all we can say. We've been slackers since our last post in 2012 while we were keeping everybody up to date about Brad's radiation therapy that took place during the week of Thanksgiving 2012.

Unfortunately, the return of our blogging does not bring us with the most enthusiastic of posts, but since we anticipate the need to continue sharing Brad's story, it's important we share the back story. In November, Brad had a CT scan (his PET scan was denied because it wasn't "medically necessary"). The results showed that Brad's cancer was active again, resulting in his Oncologist requesting a PET scan to obtain additional information about the activity. Sadly, it was denied AGAIN. I won't elaborate on my thoughts about Obamacare. After having to submit a special request, Dr. Fintel was able to obtain approval for the PET scan in December.

The information from the scan showed pretty significant activity all throughout Brad's body again, which was such a surprise given that both Dr. Fintel and Brad's Radiation Oncologist were predicting several years without activity. Needless to say, the option immediately presented was a return visit to Duke University to determine if now is the time for his bone marrow transplant (BMT) or stem cell transplant (SCT). That visit took place this past Monday on January 6th.

What we found out was both frightening and a relief all at the same time. Brad's cancer has progressed to a point that the chemo is no longer working the way that it should be. As a result, we were given 2 options:

1. Continue taking chemo, knowing that there would be shorter remission periods that would continue to diminish over time or

2. Have the bone marrow transplant

Particularly after hearing that if Brad continues to have chemo, his life expectancy is 2-5 years based on progression, we clearly are choosing the most aggressive treatment option available and Brad will be having a bone marrow transplant. Although it’s easy to think in your mind, well, doctors don’t really know when somebody’s body can’t fight any longer against this horrible disease, when your loved one is being told 2 years, it’s like a horrible lifeline that you can’t help but think about and cling to as a clock that’s ticking.

Beginning next Monday, January 13th, Brad will once again undergo chemo here in Roanoke as pre-transplant preparation. He will have 2-4 cycles, each cycle taking place every 21 days. Once he has completed his chemo he will have a PET scan to determine whether the cancer has gone into a temporary remission. Once that occurs, a very grueling transplant process will begin and we will "move" to Duke for a minimum of 90 days. During that time, Brad will spend the first 30 days in the transplant center in an ICU environment. Once he is given the opportunity to leave the transplant center, Brad/we will move to approved medical housing "off-site" that is within a 5 mile radius of the hospital, for daily appointments of blood work and other tests to make sure he is staying healthy.

Dr. Rizzieri, Brad's Oncologist, has said it will be a year before Brad is able to return to work on any full time schedule. Brad may be begging at the 6 month mark for some medical clearance for part time status and if he's lucky he may get it, although right now, he's been told no work for one year due to the risk of illness and the general stress imposed in the work environment. The recommendation is that he allows a full year for recovery.

I'm not gonna lie. This upcoming year will be a true test of faith and spirit for us. Although this process is so frightening and comes with some serious risks, we have so many pieces that have already come together that show us this is God's plan and that his presence is here. Brad's corporate offices for East Coast Metal Distributors are located in Durham, so he has a ton of employer support. We were told today when meeting with the President, that Brad needed to take his year or however long it took to recover and that his branch and his position would be waiting for him when he's able to come back to work. Another huge blessing is my recent change in positions with the American Cancer Society, which gives me significant flexibility to work remotely, with access to one of my offices in Raleigh, NC, only about 20 minutes from Duke. This flexibility means we won't also have to worry about my loss of income and will allow me the opportunity to continue working and being fully available and present for Brad while he's in Durham.

We ask that you continue to pray for a healthy spring leading up to Brad’s transplant in March or April (to be determined once he has a clean PET scan). It is really critical we keep Brad illness free since his immune system is so compromised right now. So, if any of our friends making visits have any of the yucky bugs going around, we ask that you give us a call instead of a visit. We love you, but not your germs!! Please also keep Avery in your thoughts and prayers. This is going to be a REALLY tough year for a 15 year old that has such a great relationship with his dad and their contact will be minimal while we are at Duke. Pray that he has strength to allow his concerns, feelings and questions to be met with an honest and open heart and that he and Brad can maximize their time together before Brad heads off.

There’s lots more to share, but this is certainly enough for one post. Thank you for all your love and support.

Love,

Sandy

Happy NEW Year!

Things have been a little crazy since the last post with lots of Dr. appointments happening for Brad and we apologize for not sharing the updates.  On November 19th, Brad received his combination of his Rituxan chemo and Zevalin radiation.  We're hoping that will be his last treatment for a very long time.  The picture to the left is Brad's special radiation "cocktail".  It was mixed the day of receiving his treatment and came in its very own protective case.  What we found out is that due to the outrageous cost, the radiation is not created until there is confirmation that the patient has arrived to the hospital.  What we also found out is that Brad was the very first patient at LewisGale Hospital to receive this particular radiation therapy.  It's typically performed at another local hospital because there are only a few licensed medical practitioners in Roanoke who are able to administer the treatment. This radiation flows throughout Brad's body and attaches itself to his cancer cells to decrease them in size.  Because of Brad being the first at the hospital, he generated lots of interest from the nurses not only in the chemo treatment room, but also in the Nuclear Medicine area of the hospital.  We all had lots of questions! 

We were initially told by Brad's primary oncologist that the cost of this radiation was quite expensive compared to the $18,000 per treatment sessions he has been having all year. According to Dr. Fintel, the cost would come in around $40,000.  That cost was our primary reason for pushing treatment to take place prior to the end of the calendar year since our out-of-pocket maximum had already been hit.  We have a very high ($10,000) threshold on our out-of-pocket each year, so we didn't want to start 2013 by adding that cost to already existing medical bills.  You want to hear the kicker?!!!  Brad and I were reviewing his medical claims for 2012 and guess what the actual cost of his radiation was?  $81,701!!  Holy crap is all I can say...well, actually, I could use another word, but will refrain.  Totaling his 2012 claims for the year, several of which haven't hit yet, we're currently at $293,019.  That is completely insane. 

I know I have gone on before about the cost of health care and won't do so again, but we are so blessed to have a great insurance plan that allows us the luxury of choosing Brad's treatment facilities, physicians, etc...  HOWEVER, to those who cannot pay those premiums and out-of-pocket deductibles, even if it means setting up a billion payment plans, which is what we have done, somehow this has to be recognized as unrealistic for many.  Because it cost an arm and a leg, it only seems appropriate that you see a picture of Brad receiving his injection since it's so different than what most people think of when they hear the word "radiation."  Needless to say, he'd had a rough day and looks a little sleepy, but here's our little "pot of gold"...

Brad is being closely monitored by Dr. Fintel because of the side effects that start approximately 3-6 weeks post radiation.  The treatment actually causes his blood counts to decrease significantly, putting him at a high risk of getting sick easily.  During his last check two weeks ago, that decline had already begun.  He goes back again today to have his blood checked and get the results of last week's PET scan to see how the radiation is working for him.  Because of his decreased immunity and the flu epidemic that is currently in Roanoke, we've been laying pretty low at home for about the last month and doing our best to avoid those who have been ill. 

As mentioned above, we're hoping this treatment will last for several years.  Statistics show that about 72% of patients will relapse 6-18 months post radiation.  We're praying Brad is not part of that 72% and that this is truly a Happy NEW Year for us.

We wish each of you the very best in 2013.  Thank you for the constant love and prayers you send our way!

Love,
Brad, Sandy & Avery

I'll Take ALL The Toothpaste You Have...

A phrase that was recently used at work was that it was time to "put your big girl panties on."  That's how this entire week has felt for me.  It was another anxious week as we waited to meet with Dr. Fintel on Wednesday for the results of Brad's bone marrow biopsy (to ensure he was able to withstand the pending radiation), as well as to obtain the results of his PET scan. 

Of course Brad's appointment fell on Halloween - it seems that big announcements and test results typically fall around some kind of holiday for us - very strange.  The results were exactly what we anticipated, but not what we wanted to hear.  The cancer has not entered Brad's bone marrow, however, it has spread throughout his lymphatic system again.  He has many enlarged lymph nodes throughout his body, nearly all of which Brad had been unable to directly feel himself.

Brad got a call yesterday from his Radiation Oncologist (Dr. Hess).  We have an appointment first thing Monday morning to discuss all the ins and outs, answer questions, talk about safety protocol, etc... of Brad's upcoming treatment. We feel confident Brad will likely have his procedure within the next two weeks, but we'll keep everybody posted.

We have received so much love and support from family, friends, co-workers and our Sunday School class that at times, it has truly taken our breath away.  Yesterday, I received the most incredible Facebook message from an amazing person who crossed my path about 18 years ago (OMG...can't believe it's been that long!).  While I don't normally share these personal messages, every word she wrote rang true. Here it is...thank you Giovanna for such a loving message:

"I still believe in God. He doesn't always listen or give us exactly what we want, does He? What is His plan? It isn't for us to know, but geez, it sure makes us wonder. The love you two have, you three, is stronger than in most families. Sure, you have a marriage, like lots of people have a marriage, but after going through so much of Brad's cancer stuff, you two have a marriage that is olympic gold medal worthy, probably more so. Your love is so strong and your honesty is so real, maybe at the end of this, Brad will be healthy and you'll go around and talk to others about pulling through adversity. I don't know God's plan... but I am praying for you. It's gotta suck... give them a break, Lord... give them health and love and more tubes of toothpaste! A long life, with those big smiles, and lots of years to use lots of toothpaste! Love you Sandy for your patience, willingness to share, and your heart.  xoxoxoxoxoxoxoxoxoxox, giovanna"

Today, I'm choosing to put my big girl panties on and as soon as we leave Brad's appointment on Monday, we're going to sneak out of town for a couple of days.  It's time for a small break so we can return to Roanoke and get ready to once again step into the unknown.  Cheers to more toothpaste!

Much love to all,
Sandy

The Lymph Nodes Are Swelling Again...

Several weeks ago Brad noticed that he had a swollen lymph node in his groin.  Since we're hyper-sensitive to the lumps and bumps, he wanted me to verify he felt something there.  By the following week it had nearly doubled in size.  This quick growth prompted an immediate e-mail to Dr. Fintel (who responds super quick to our random inquiries).  When he didn't respond, Brad called the office to find out he was on a European cruise.  Damn it. 

We were able to see Dr. Fintel last Tuesday and he verified that a lump was indeed identifiable.  While we both knew this, and nothing new was discovered in Dr. Fintel's office, I did have a meltdown knowing in my heart that the treatments Brad has been enduring since February have not been successful. 

When discussing how we move forward, we were given a couple of options:
1.  Continue having the same infusions that Brad has been having throughout the year or
2.  Move into radiation therapy

You're probably asking yourself "why would Brad continue having the same treatment he has been having if it's been unsuccessful?"  Trust me, I asked the EXACT same question.  Dr. Fintel's response was that although Brad's treatment has not discontinued the growth of the lymph nodes, it has isolated them to one area, which would likely not have been the case without the infusions.  I followed that question up with "what is the anticipated outcome if Brad continues the infusions?"  The exact response word for word from Dr. Fintel is that we should "expect the bear to come out of its cave in the next 6-12 months."  When clarifying this, Dr. Fintel indicated he would expect an aggressive change in Brad's health if we did not change our course of action.

We decided on the spot to move into the option of radiation therapy and we left with an appointment to Brad's new Radiation Oncologist, Dr. Hess, who we met last Friday.  Before Brad can have any radiation, he has to undergo another bone marrow biopsy to ensure that there is less than 25% cancer within his bones (we are confident this will be the case).  If Brad were to have radiation and had more than 25% cancer within his bones, it would likely kill him.  Yes please, we'll take the bone marrow biopsy.  His biopsy is scheduled for October 23rd with the anticipation that radiation will take place shortly after all of his preparatory appointments. 

The great news about this treatment is Brad can still have a bone marrow transplant afterward or if decided, he could even have this particular radiation again.  Thankfully, the side effects should be less than when Brad was on chemo.  The biggest danger is that because the radiation is so strong, within a few weeks all of his red and white blood cell counts will bottom out.  This puts him at a high risk for getting sick - perhaps we'll package him in bubble wrap!

Since last week, a second swollen lymph node has been found.  I have to admit, I'm a little anxious for the next PET scan to see what else may be detected (this will be done before radiation).  I'm praying there's nothing more than we know now, but we'll keep you all posted. 

There's lots more to share, including some of the precautions after Brad's radiation takes place, but I'd hate to ruin the surprise.  This means you'll have to read it in another update very soon.  Thanks for the many continued thoughts and prayers.

Hugs,

Sandy