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

Lapsed Blogger Update...

I have been HORRIBLE at keeping everybody up to date on Brad's progress and am so sorry for that. To say that things have been busy is an understatement, but several folks have asked how he's doing so I wanted to share the latest.

Brad completed his 4 rituxan infusions in March and did really well with the treatment. Compared to his chemo, there were virtually no side effects except for extreme exhaustion the day of and the day after treatment. We did see a slight increase in his energy level, but aren't sure if that was because Brad mentally knew he was on the right course again or was really regaining some strength.

When Brad returned to Dr. Fintel the decision was made to continue treating Brad with the infusions for the next 2 years. We were and continue to be really up and down and all over the board with our emotions about this. While the infusions will only take place every other month, instead of weekly, there's the down side that while he is in active treatment we cannot say he's in remission. I know there are so many patients and caregivers out there that would give and do anything to be in the position we are in right now where we do have treatment options. However I have to say, this process and this relapse has been much more challenging than I ever thought it would be.

The decision was made this past Friday to reinstall Brad's port into his chest since we know he will continue treatment for at least the next two years. We should find out this week when that surgery will take place. I'm not sure if it will happen prior to his next treatment on May 3rd. What I do know, is that it's going to knock Brad out of commission for about a week if the process goes anything like it did the first time around.

This has been a really tough week on so many levels. Without going into the details, please pray for strength, an ongoing commitment to healing and having the desire to fight the good fight.

Thankful for so much,
Sandy

Treatment Plan...Round 2

This past Tuesday we returned to Dr. Fintel to discuss the results of Brad's testing at Duke. The great news is that no secondary cancer has been identified and his blood tests were normal. Brad was given several options for his treatment plan which included the following:

1. Watch and wait (just like it sounds - do nothing to see how the cancer continues to develop)
2. Rituxan infusions (Rituxan is an antibody that attaches itself to the B-Cell in one's body...the cell that is the "weakest link" for Brad).
3. Bexxar, which is a Rituxan-radiation blend.

After hearing the pros and cons for each course of treatment, Brad chose the Rituxan infusions. Unlike the Bexxar treatment, the side effects of the infusions are significantly less, Brad doesn't need to have his port reinstalled AND he won't lose his Richard Simmons like, full head of hair.

The infusions, which will begin on Valentine's Day, will be done intravenously and according to Dr. Fintel, can last anywhere between 8-12 hours each. Brad will have four infusions, one each week for the next 4 weeks. It's our hope that the side effects will be minimal and that Brad's energy will soon return.

While we realize this treatment is more like a temporary band-aid, it's our hope that the infusions will help put Brad's cancer back to sleep for at least the same 1-1/2 years that his chemotherapy lasted. We're a little unsure whether the infusions can officially put him back into remission, because the goal of Rituxan is to slow the growth of the cancer cells and this course of treatment is often used as a maintenance option once a patient goes into remission. Keep your fingers crossed and prayers coming that we have success with this new plan.

Thank you for the kind thoughts and cards that have been coming our way. It's so comforting to know we have lots of cheerleaders and we are confident Brad is going to beat this.

Hugs,

Brad, Sandy & Avery

Good News & No News...

Today was our much anticipated re-visit to Duke University's Adult Blood and Marrow Transplant Center to gain additional insight into what we thought was going to be Brad's next step to recovery...a bone marrow transplant. Well, that's not what we walked away with.

After spending some time with Dr. Rizzieri and sharing his list of recurring symptoms, Brad was told that the symptoms he's experiencing, do not match the type of cancer he has been diagnosed with. Follicular Lymphoma affects the "B Cells" in one's body however, the symptoms Brad is experiencing are more commonly found in "T Cell" type lymphoma. This has Dr. Rizzieri somewhat stumped and raised some concern that something else could be going on. As a result, he ordered about 12 different blood tests for Brad to test his liver, kidneys, thyroid, allergies and several other things that could be impacting the way Brad is currently feeling. Those results will be back at the end of the week. If everything comes back normal, Dr. Rizzieri suggested that another lymph node be removed and biopsied, because it's possible that his body is developing a secondary cancer. I asked whether it's possible that a B Cell Lymphoma develop into a T Cell Lymphoma and he indicated that could not happen. So that's where the "no news" part of the blog comes in.

The good (in my mind GREAT) news is that Brad will not move forward with the transplant right now. Although his cancer has returned much sooner than anticipated, what we found out today is that the transplant is the last ditch effort to a cure AFTER all other treatment options have been exhausted. We were quite frustrated with this (not only because Duke is a 3 hour drive each way!) but because we have been told Brad is a great candidate due to his health, age, donor match, etc... and was even told again today that he will indeed need the transplant at some point in his future.

Why wait? That was EXACTLY what we were wondering and so frustrated about. If you know that a transplant is coming, can't/shouldn't we do it now? What we didn't know is that the type of transplant Brad would have has about a 20% mortality rate. However, chemotherapy, regardless of the type one is having, has a much lower mortality rate. If chemo keeps a patient in remission for a couple of years at a time, the quality of life is still much higher than that of most transplant patients. Once a transplant takes place and should another relapse occur, there are really no remaining treatment options. So yes, this is the "good news" and it also means we don't need to get rid of our puppy dogs, so Avery is quite thrilled at the moment!

We will return to Dr. Fintel here in Roanoke on February 7th and will hopefully be able to discuss the blood test results and whether we should move forward on chemo, radiation or both to treat the existing cancer.

Bless Brad's little heart...I know he wants answers, we all do. We will get them, but it's just not going to be today. We'll keep everybody posted on our next visit to the Dr. From the bottom of our hearts, thanks for all the prayers and positive thoughts you're sending our way.

Love,
Brad, Sandy & Avery

God Gave Me You...

Dear Brad -

Even though I'm in Atlanta, I want to wish you (us) a HAPPY ANNIVERSARY! I can't believe that 10 years ago today, I had the most amazing opportunity to not only marry my very best friend, but the most incredible loving father. I feel so blessed to have you right next to me each step of our crazy journey together. I'll need your music skills to get it up on the blog, but the Blake Shelton (or Dave Barnes) song, "God Gave Me You" describes exactly how I feel. I love you with my entire heart and soul - thank you for being such an amazing husband.

I've been a walking heartache
I've made a mess of me
The person that I've been lately
Ain't who I wanna be

But you stay here right beside me
Watch as the storm goes through
And I need you

God gave me you for the ups and downs
God gave me you for the days of doubt
For when I think I've lost my way
There are no words here left to say, it's true
God gave me you

There's more here than what we're seeing
A divine conspiracy
That you, an angel lovely
Could somehow fall for me
You'll always be love's great martyr
I'll be the flattered fool
And I need you

God gave me you for the ups and downs
God gave me you for the days of doubt
For when I think I've lost my way
There are no words here left to say, it's true
God gave me you

On my own I'm only
Half of what I could be
I can't do without you
We are stitched together
And what love has tethered
I could baby, never undo

God gave me you for the ups and downs
God gave me you for the days of doubt
God gave me you for the ups and downs
God gave me you for the days of doubt
For when I think I've lost my way
There are no words here left to say, it's true
God gave me you, gave me you
Gave me you.

Take Courage. Do not be afraid.

If you have followed our blog from the beginning, you may remember an entry from December 2009, where I mentioned Avery had received a Max Lucado "Fearless" flip calendar as a Christmas gift. The calendar has daily biblical verses and inspirational thoughts to help one be strong during times of uncertainty. Well, since Avery didn't pay too much attention to the calendar, it has lovingly found a home on my desk at work. Yesterday's reading was simply this from Matthew 14:27: Take courage. Do not be afraid.

Wow...what a "hit me in the gut" moment as it was the perfect match for what I was feeling. I read that verse as I was preparing for my usual Monday morning staff meeting and mentally preparing to go to Brad's oncology appointment to discuss his upcoming treatment plan that will take place due to his relapse.

During the past 10 days, Brad and I had truly spent some quality time discussing the options we thought would be presented to us. More chemo, maybe radiation, maybe both, maybe a bone marrow transplant...you know, the typical husband/wife coffee talk.

What we found out yesterday is that Brad's cancer is much more aggressive than we originally thought. He has some pretty significant "activity" below his waist (get your mind out of the gutter) as well as in his neck on the right side. When Brad was diagnosed 2 years ago, a large lymph node was removed from his neck, but on the left side. Because we are fortunate enough to have been down to Duke 2 years ago for a discussion of a bone marrow transplant and found out that Brad's brother Chad is nearly a 100% match, Brad's Oncologist has suggested that we move forward on the transplant process.

This is a very scary time for us. We now wait to hear when Brad's appointment at Duke will take place, likely by the end of February. Due to ensuring that Brad's body is ready to accept Chad's bone marrow, a series of preparation procedures will be done, including pre-transplant chemo to put his cancer back into remission. He will have his heart, lungs, liver, kidneys and many other tests performed as well as again going through a psychological evaluation to see if Brad has the support system in place to manage the transplant.

Because the transplant process is one which will require some significant time for Brad to recover, as well as the need for him to have easy access to the transplant center at Duke, Brad will need to "move" to Durham while he recovers. For most patients, this is typically about 100 days, although full recovery time for a transplant patient is about a year.

We know that a long, emotional road lies ahead for us. I ask that you pray specifically for Brad, Avery, Brad's parents and brothers and me to have the strength and courage to travel the road in a way that will ultimately be the healthiest for Brad. Several of you have already asked "what can I do to help?". To be honest, we don't know at this point in time. What we DO know, is that we have the most amazing support system in place, including our family, friends, a loving church and Sunday School class, as well as a loving God who knows what lies ahead and will lead and guide us. Yes, we are doing our best to take courage and not be afraid.

A Relapse...

Yesterday, Brad went for his 6 month PET scan and we were able to get the results yesterday afternoon. Sadly, the news was not what we wanted to hear and we have been told that Brad's cancer is "active" again. We were really hoping to get past July 16, 2012. Why do you ask?

If you haven't followed our story from the beginning and are just catching up, when Brad was diagnosed with his cancer in December 2009 and started getting information from his Oncologist at the beginning of 2010, one key piece of information that stuck with us, is that if Brad could make it past 2 years without a relapse, it would significantly decrease his chance of needing a bone marrow transplant. Because his cancer has again become active prior to the 2 years, we're not quite sure what this means regarding his treatment options.

We will meet with Brad's Oncologist (Dr. Fintel) on Monday, January 23rd. Please keep him and all of us in your thoughts as we explore the options that may be available and make the best decision possible. We're nervous, anxious and emotions once again run high for all of us. Thank you for your prayers and positive energy - we'll keep you posted on what happens next.

Much love,
Brad, Sandy & Avery