Sunshine!

     The weather outside is transitioning from winter to spring and for that I'm so very grateful.  I love the blue skies, the spring rain, the feeling of sun on my face and the spring flowers coming up through the dirt after a long winter as life begins again.  Today as I was out in our backyard I looked over to see "popcorn" on our little apricot tree and interrupted the pair of ducks courting in our front yard.  I love the smell of flowers and the uniqueness that each flower brings. Spring is a wonderful season of transitioning. 

     Our lives are also changing and hopefully providing new life.  Because most people proceed directly from collection to transplant, we were a bit nervous that insurance would decline collection only, but we heard this week that they have approved collection and things are moving forward.  Collection will start late next week. 

       We're still learning about collection and will understand more after our consent appointment next week.  I thought however I'd try to share a bit about what it is.  There are two types of transplant, autologous (from Chris) and allogeneic (from a donor, usually a sibling).   In order to do to transplant they must first harvest stem cells.   Stem cells are the basic building block of many cells in the human body.  The collect these "baby" cells, then during transplant us a high dose of chemo that kills everything.   Shortly after they reintroduce these stem cells into his system in hopes that these new cells will develop correctly. 

      There are two overlapping parts to collection.   It starts with daily shots that will cause his body to overproduce stem cells, which can often cause bone pain as they kick into overdrive producing stem cells.  As described above stem cells then develop into other types of cells.  In the case of blood cells they will become red blood cells, white blood cells, and platelets. Luckily stem cells are found in the blood as well as the bone marrow, and they will be collecting them from his blood.

      In a process very similar to dialysis (and likely plasma donation) called aspheresis they will temporarily remove blood from his body and filter out the stem cells and then return the blood.   The cells will then be taken to a lab, processed and then stored until transplant.   Most people tolerate it pretty well and there are usually very few complications. 

    So as we celebrate Easter this Sunday we are very grateful for the opportunity to be soon undergoing collection.   A break from chemo has been a wonderful blessing.   It has allowed Chris to continue to regain some of his strength.   He's had a bit more energy, and is in great spirits.  We both are still reveling in sleeping in bed, and also enjoying the luxury of a safe and relaxing shower.   We've enjoyed going out a couple times together for errands other than doctors appointments and driving around with the sun roof open.  May all of you enjoy this weekend and the coming spring weather.

He is Listening

     The past couple weeks have given a reprieve from the endless appointments and procedures with the main item on the agenda each week being chemo.   Being able to meet Jonah and catch up with Carmen and Jim is something that we've looked forward to.  Life is so very unpredictable from week to week that planning anything besides medical appointments is tricky but we enjoyed the time that we were able to spend together.

     Today we met with Dr Sborov for the beginning of cycle #6.  He explained the results of the bone marrow biopsy from the March 1st and it was.... good news!    The chemo has worked very well and he's doing well enough that instead of another cycle of chemo that they canceled his chemo for today (and the next few weeks).   Instead (pending insurance approval) we are doing collection in about 2 1/2 weeks.   Until then he won't be doing chemo.  Actual transplant is still on hold and possibly won't happen until next year, but we are OK with that.  Aside from the one week off we got the week of Valentines, he hasn't had a week without chemo since he started in October. 

       After collection he will likely start a new chemo.  Bortezomib which is likely the biggest offender for his neuropathy will be discontinued, so hopefully his numbness, pain and tingling will get better.  Instead of CyBorD (Cyclophosphamide, bortezomib and dexamethasone) he will likely do DRd.   His drugs go by different names so it also has several aliases it can also be called DLd, Dara-Rev-dex, Dara-Len-dex.  

daratumumab (Darzalex®)

revlimid (lenalidomide)

dexamethasone (Decadron®)

     The best news about the new chemo is that depending on how he responds his infusions could gradually be dropped to bi-weekly and eventually monthly.   I can't even put into words how glorious that sounds.       

     Compared to the news we got today this seems to pale in comparison but we've reached also an amazing significant event.   For the first time in about a year and a half we've been able to return to sleeping in bed.   When Chris started to have problems breathing in the fall of 2016 we moved to sleeping on the couch.  I could have stayed in bed, but being together helped us sleep the best we could in the circumstances.  When my Grandpa got him an amazing recliner Chris started sleeping there, and I was able to claim the couch for myself.   We're fortunate that our couch is fairly comfortable but still nothing quite compares to a real bed.   Luckily he's been able to build strength and his new trach has made sleeping back in bed a reality.  Sleeping in a real bed and being able to cuddle up next to your sweetheart is incredible.  It does however come with one drawback, getting out of bed and facing the day!  I treasure the days I get to sleep in. 

     The slower pace has been great to allow us to recharge and recoup.   It's also provided time to reflect, which is in many ways overwhelming.   All that we've been through and all the medical challenges we've dealt with in the past few years have been unrelenting.   Last year I think we were so busy surviving that we haven't had time to really process much.   I cried very little during those many days in the hospital, but looking back tears instantly come to my eyes. Several people have told me recently that I'm strong.   I know they mean it as a compliment, and I should take it that way, but it reminds me that just below the surface most days I feel like a fragile porcelain figurine.  As I've been searching for bamboo items to carry over the theme from our bedroom into our new bathroom I came across this quote.  "The bamboo that bends is stronger than the oak that resists".   We both have really tried to just take things one day at at time and go with the flow.   I'll have to remember being bendable is different and that I am strong, like bamboo!  Today's appointment was a perfect example.   We went in expecting it to just be a typical appointment only to take a 180 degree turn and go in a different, but good direction. 

      As someone who likes to be prepared, not being able to plan anything much in the future is a challenge.   In pondering the difficulties of the past I want to do what I can to make the future easier.  I think one of the most difficult challenges of his myeloma diagnosis is that the future is terrifying.   I try to focus on living in the present, but it's not an easy task and it's the prime reason why tears are always just below the surface.   Very few people know how long they will live, or when they will lose a loved one.  I don't know this either but I do know that there's many difficult days in our future, transplant being one of them.   In a caregiver support group I'm in people so frequently post about a loved one who is now on hospice or who has lost their battle that it's hard not to be constantly reminded that myeloma is not curable.   We hope and pray that he will beat the odds, or that the new treatments on the horizon will drastically increase his life expectancy but we know the odds aren't in our favor.  However now while he's feeling better we are talking about plans for his funeral.   It's not easy to do but it will be a lot easier now than whenever in the future when it might be needed.

     At church recently the closing hymn made me cry.   At the time I couldn't understand why the tears, but in rereading the lyrics again later they again touched my heart.  The pioneer's weren't able to stop when things got hard, and neither can we...

Then work and watch and fight and pray

With all your might and zeal.

Push ev’ry worthy work along;

Put your shoulder to the wheel.

Put your shoulder to the wheel; push along,

Do your duty with a heart full of song,

We all have work; let no one shirk.

Put your shoulder to the wheel.

  With the good news today a "heart full of song" seems a bit easier tonight than it was this morning.  Even though collection isn't a walk in the park, it's a relief to be storing his stem cells for the future.   Having things be easier for a little while will make it easier to fight will all our might and zeal.  So we'll put our shoulder to the wheel and keep pushing.   We're developing the strength with need for the challenges ahead.   We're being given the opportunity to gain strength that likely will be needed.   

    When looking to pioneer's who have overcome difficult trials I need look no further than my mother.  In 2010 she suffered a stroke that drastically changed her life.  It took away from her all of the things that she enjoyed doing and made life incredibly difficult.  Even though basic things like reading, writing and even driving are now difficult she has taken then time to send me several encouraging notes.   It is always such a nice surprise to check the mail and instead of bills, ads or junk mail to find an envelope with my name on it written with love.  She, like many of you, prays daily for us to have "strength to handle the challenges".  This week she mailed a small package with the reminder to celebrate my worth.   I know it wasn't easy for her to mail the package, and I know she knows hard hard it is to face and overcome very difficult challenges. 

    The first blog I wrote about the diagnosis of multiple myeloma was called "Close Around Me" and as part of it I quoted the song "A Child's Prayer".   Here is part of the the second verse, applicable to today as I feel like we are soon to be entering the second chapter. 
 

Pray, he is there;

Speak, he is list’ning.

You are his child;

His love now surrounds you.

He hears your prayer;

He loves the children.

     Thank-you for all of the prayers, thoughts and concern on our behalf, it is because of them that we've been able to make it this far.   As you say a prayer, please express gratitude for our wonderful news today and for continued strength.   May hopefully this coming chapter be easier and have time to be filled with happy memories.   

    

Humbling Experiences

Just under two years ago, my sweet niece and her husband showed up at my door and asked to name her son after me. It was one of the most humbling moments of my life. This past weekend I finally got to meet him. Say hi to my great nephew, Jonah Christopher! Such a cool little dude. He is almost 18 months and is so smart, he even does a tiny bit of sign language. Such a cool little dude!

Another humbling moment has been having my brother come down, for almost two weeks, and work himself ragged to give me a safe shower. Throughout the whole process, all I wanted was for it to be safe, so let me explain a little. There is a nasty side effect of the chemo I am on, that gives my feet and hands neuropathy.  Basically, they are numb, or feel like they are getting numb or in a state of pins and needles. It makes it hard to walk, as you cannot feel the ground. It is even worse with shoes on. If you have seen me walk recently, and saw how funky it is, it is because of the neuropathy. The best way to experience it, I think, is if you duct taped blocks of wood to the bottom of your feet and tried walking around. It is why I have an awesome cane, for the balance. Anyways, because of it, walking is frustrating, but steps up or down can be hazardous. Even one step. Previously, the shower we had, had a 4 or 5 inch lip you had to step over, and if you add water and numb feet, well, it is a recipe for disaster. Enter my brother. He listened to what we needed, added his expertise, and went to work. What we have is an amazing walk in shower that is comfortable and safe. Oh yeah, and he added heated floors and then extended them to the bench. Yeah. It is that awesome. 

Recently, I had another bone marrow biopsy. This time the went into my femur. I can happily report that no drill bits were broken. However, to date, it was the single most painful moment of my life. The humbling part though, was the doctors and nurses in the room were amazed that even though they knew I was in so much pain, I could remain completely still.  At the time, I thought it was best not to move thinking it could be disastrous!  I still feel pain in the bone, once in a while, but I am using it as a reminder that this battle is far from over, and if I can survive a little drill in the bone, I pretty much can survive anything.

And finally, my bride. Michelle humbles me as I observe her. She recently had a conversation where someone told her she was so strong. She declared, "I have to be!". Of everyone I have seen or met on this journey, I know that it is the hardest for her to go on this ride with me. The thing is, she IS strong. In every way. Physically, she has kept me from falling numerous times!  I am no small man at all, and when I need her, she is rock steady, every time. I have pushed away nurses twice her size, because they just aren't as reliable. Mentally, she has run a house, a store, appointments, finances, and does it all with a smiling face. Spiritually, she shows me every day that her faith can move mountains. She has never wavered, and never lets me waver too long.

I have my weak moments, but I see her and if Michelle can handle what she does, then I can handle Multiple Myeloma.

In Like a Lion, Out like a Lamb

      I didn't get around to writing a blog last week because we were in the midst of the bathroom remodel.   We are so grateful that his brother was able to come and was willing to share with us his skills and his time.    The bathroom turned about amazing!   It's hard to explain how much of a difference that having a shower where he feels safe will make.   It is a huge blessing, that has already added some peace of mind and relaxation to his life.   His sacrifice and hard work on our behalf is something we will think of every time we take a shower.  I've still got to finish painting and add all the finishing details, so you'll have to wait for a full before and after picture but here's a picture of Fred's amazing work.

      Aside from chemo, the main thing that has been on our appointment list was the bone marrow biopsy on March 1st.  They did it up high up on his femur and were able to get the samples that they wanted.   There isn't anything that they can do do to numb bone and Chris said it was the most pain he's ever felt, but they were astonished at how despite the pain Chris was able to stay still.   His last one was on Halloween, but he'll likely have to have one every three months.  
       The results have come back in we're waiting to hear from Dr Sborov the interpretation.  There are many things that they use to monitor his myeloma and many of them we do not understand, this is one of them.   The bone marrow biopsy has a few tests, one of them is called a FISH panel (fluorescent in situ hybridization).   "FISH can be used to look for specific changes in chromosomes.   It's very accurate and because cells don't have to grow in a dish first, results are often available within a few days".  (To read more about Myeloma Testing Visit Cancer.org) 

Here are a few of the things that come back on his FISH results:

1q21 (CKS1B)
9q34 (ASS1)
11s13 (CCND1)
14q32 (IGH)
15q24 (PML)
17p13 (TP53)

    Another test is called Immunophenotyping and gives us results involving these and many more:
%CD28
%CD200
%CD46
%CD45
%CD19
%CD20
% Cytoplasmic Kappa
% Cytoplasmic Lambda

     They say that being treated by a myeloma expert can make a very big difference in the life expectancy of someone with myeloma, now you can understand why. 

      It was nice with everything going on the past two weeks for me to also have visitors.   My parents were kind enough to come by and bring some tools that Fred needed.   I also enjoyed breakfast with my Aunt Shari the day of his biopsy.   It was something that we did before his diagnosis and it was so nice to have some "me" time.   My brother, sister-in-law and niece also stopped by for a short visit.   They had been sick, so didn't come in to visit Chris and it was wonderful that they were sensitive to the fact that Chris's immune system is weakened (and pretty much always will be) and didn't want to risk getting him sick.

    March also is Myeloma Awareness month.   It is represented by a burgundy colored ribbon.
      In 2017 there were approx. 30,280 people in the US diagnosed and approx 12,590 lost their battle.   In comparison Breast Cancer which had approx had 252,710 cases and 40,610 deaths.    (Cancer.gov)

    A year ago I don't recall ever hearing of multiple myeloma, now it has consumed our life.   It's a roller coaster full of emotions and while I strive to remain in control those emotions, I am always but one thought away from tears.   Our hopes and dreams for the future are simply that we have one together and that somehow Chris can beat the odds.   It's hard not to think of the many difficult things that may lay ahead of us, it's a terrifying road.  They often say to take things one week, one day, one hour, one moment at time whatever you must to make it through.  Myeloma is unpredictable and for me, someone who likes to be prepared, it's hard not to be able to plan, but part of being brave is doing what we must in the face of trials to survive.  It's letting go of the things we wish we could do and embracing what we can.  Yesterday Chris was feeling well enough to be able to run errands with me and enjoy some beautiful spring weather.   I treasure our time together.  Despite all of his battles he inspires me everyday and makes me feel so loved.