Day -8, Monday

While proofing my photos, I sneezed. It was a big sneeze, the kind that you feel coming on a full minute or two before actual blast-off. And while my lungs were expanding, the top parts pressing up against my central line, I just knew this sucker is going to HURT. I was right, and it did.

I never want to sneeze again. Ever.

Other interesting medical news? My toes look like little sausages; yeah, not fun for me or you. My Team wants me to hold Spironolactone, a medication that I’ve taken for 10 years for Polycystic Ovarian Syndrome (PCOS), and that’s great – no problem on my end. Except that Spiro also acts as a diuretic and my body, until last Wednesday, was used to this medication. And then – cold turkey – so I’ll add two words: “Fluid” and “Retention”. Yeah. Apparently sausage feet are a thing. No photos of that, thankfully.

Finally, the past two mornings I’ve awoken around 3 or 4 am, after shifting in my sleep and disturbing my line. The sharp jabbing pain wakes me more than four espresso shots ever could, but then getting back to sleep hasn’t been easy. This is partly because of the line, but also because of my mouth biopsies from last Friday; I enrolled in a Dental protocol researching Oral Graft vs Host in bone marrow transplant patients. From the first moment I set foot in the NIH, I have always wanted to help scientists and medical folks better understand my illness, so that others don’t have to suffer. So if my mouth has a heartbeat? Well then, OK. Sleep will have to wait.

Today was, eh. It started early with bringing Andy to the airport. I cried while saying good-bye, and didn’t even bother with the brave face, just let tears fall where they may. The drive back to the lodge was OK, and I managed to sleep for another hour or two before attacking the laundry and working on this project. The library holds a special place in my heart and sipping coffee while immersed in a creative process makes me feel happy.

Later, I hit up Rock Creek for a walk and spent a little time with Harry Potter (onto Book 2!) before meeting two friends for dinner. Both have loved ones at the NIH and I sincerely admire their strength and courage. It’s not easy being a caregiver and as wonderful as the NIH is for patients, I wish there was more – especially in this time of COVID – that the NIH could do for our loved ones who selflessly sacrifice. COVID has stripped away our ability to be with loved ones during our most vulnerable moments; as humans, we need this connection. I am saddened for my friends and NIH Family at what has been lost.

I don’t know how to change this aspect, but I wish that families could receive additional support – even something like an acupuncture or massage service, tickets to local attractions or events, an assigned social worker. (And some do – that is wonderful! ) It’s not an easy thing, to sacrifice career, school, family, geographical location in order to support a loved one; we need to do more for our caregivers.

OK – off to bed. Tomorrow I report to inpatient, but for tonight, I’m hoping for good sleep, gradual deflation, no line pulls and definitely no sneezes. Somehow, I think this is too much to ask, but I’ll ask anyway…never hurts, right?