Strong Like Mom

We have some positive news to share today (finally!) 

I was discharged from the hospital yesterday after completing my fourth cycle of SL401.  I had fewer side effects this time, and the remaining lesions on my skin (thanks to this cycle plus the radiation treatments) are the smallest they've ever been.  I'm thrilled that the cancer is at its lowest presentation to date, because I also learned yesterday that my bone marrow transplant will take place later this month.

I am scheduled for transplant on March 21st with the new 9/10 matched donor.  As I mentioned in a prior post, on paper, this donor is a bit riskier than the last donor.  One issue is that she weighs less than I do, so the concern is that they may not be able to extract enough marrow for me.  Another is that she is female and has had prior pregnancies, which increases the risk I will develop more severe graft vs. host disease.  And, there is still an increased chance of engraftment failure with my antibodies.  Those issues notwithstanding, this donor is still my best available option.  So, I'm throwing out the "what's best on paper" notion in hopes that this donor is better suited than the last.

The donor's medical clearance will be down to the wire again.  My team at the James should receive this donor's clearance forms March 13th, and I'm scheduled for admission March 14th.  Although this timing is enough to drive my Type A personality insane, the team has reassured me that failure to clear for donation is truly a rarity.  So much so that last month's snafu is the first time my Transplant Coordinator has encountered the issue.

Barring any other problems (fingers crossed!), my transplant schedule is as follows:

• March 14th (BMT Day -7) - admission to the James, removal of existing port and placement of new, larger port (Central Venous Catheter)
• March 15th, 16th, 17th (BMT Days -6, -5, and -4) - total body irradiation (TBI) twice daily (radiation treatments to my entire body).  This is part one of the myeloblative conditioning regimen that will destroy my bone marrow to make way for the new.
• March 18th and 19th (BMT Days -3 and -2) - high dose chemotherapy each day.  Part two of the myeloblative conditioning regimen.
• March 20th (BMT Day -1) - rest day
• March 21st (BMT Day 0) - Transplant Day, aka my new immune system's "birthday."  My donor will undergo surgery (she is donating marrow instead of peripheral blood stem cells), and her donation will be flown to the James.  I will receive the donation the same day via transfusion through my port; no surgery for me.  The transplant could take less than an hour or up to a couple of hours and will likely occur in the late afternoon or evening.

I should be in the hospital for two to three weeks following transplant.  From what I've heard, I will feel my worst during that period as the substantial side effects of chemo and radiation kick in and my blood counts are at their lowest.  We will also be waiting with baited breath during that period for my blood counts to start rising and showing successful engraftment.  

Visitors to the hospital will be extremely limited during this period.  Anyone who visits cannot have so much as a runny nose, and must wash their hands and wear a mask in my hospital room.  If I walk the halls on the transplant unit (which they will expect me to do to avoid pneumonia), I must be masked.  I will not be allowed to see Caroline until I'm discharged (no children under 12 are allowed on the transplant floor).  Thank goodness for FaceTime! 

After my blood counts reach a certain level, I will be released from the hospital to return to stay with my aunt and uncle in Columbus for a much longer recovery period.  The post-discharge recovery period depends on a number of factors, including the extent to which I develop graft vs. host disease, whether I relapse, and how long I remain immunocompromised.  I will require 24/7 at home care for approximately four to six weeks after being released from the hospital (they won't discharge me without having that support).  I will visit the James at least three times a week, will be unable to drive, and will not otherwise go out in public.  John and my mom are both going to take time away from work and take turns managing me and Caroline during this period. 

Ultimately, I have to stay in Columbus for outpatient treatment during at least the first 100 days after transplant.  The first 100 days poses the largest mortality risk, and there's a good chance I could be re-hospitalized during that time.  In addition to taking a number of prescription medications, I will have an overwhelming amount of environmental and dietary restrictions in place to maintain a sterile environment and avoid exposure to bacterial and viral infections.  My body will have virtually nothing to defend against infections while my new immune system develops, so we will take many of these precautions for a long time (some of which, particularly the medications, could last years). 

My medical team also told me last month that I will likely not begin to feel like myself again for at least six months after the transplant.  They also shared that while some patients are able to return to work around six months, for most patients it's typically a year or more before they are cleared to return to work.  If you know me, you know this news was particularly frustrating.  But we have a mountain ahead of us with a number of milestones I need to hit before I even think about going back to work.  It's a constant battle to remind myself I need to take this one day at a time.

In the meantime, I'm planning to thoroughly enjoy the next two weeks with John and Caroline in between follow up appointments at the James.  Although I certainly have fears about what lies ahead, I also know transplant is my only chance at a cure.  Caroline asks that you help us get our game faces on and, as her t-shirt says, be "Strong Like Mom."  It's time to beat this thing!