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.
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.
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.
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