First Post…

I attempted to do a similar blog while mom was in the hospital for in-patient chemo at Sarah Cannon in Nashville and I had nothing else to do while she slept, but I quickly realized that tumblr is still tumblr and not a great place for actual blogging.
If you’re here, you likely already know a lot of what went down during those six months. Since mom was fully booked with nail clients, weeks in advance, she had asked that I keep everyone updated through facebook posts. I know a lot of people likely judged me for being so open about her cancer battle, but it was her wish and it quickly became obvious that it was too difficult responding to people, individually.
I named this blog “Living with a purpose after loss”, because I’ll eventually be blogging more about school as that journey progresses. If there was one good thing that came out of that ordeal, it was me finally realizing my purpose in life. I beliefly thought about switching back to the English degree route at one point, a couple of weeks ago, and then quickly brushed that off. This route means so much to me, because there are so many people like mom who are misdiagnosed or just don’t get adequate treatment because of how little is understood about rare hematological malignancies and other disorders.
I recently did a research paper for my english class and chose T-Cell Lymphoma and why it’s near impossible to prevent this cancer and others. As I was digging more into HLH, I realized that mom likely had an HLH flare up during that last bit and it was likely too severe for her to succesfully undergo another round of chemo to get it under control. I’d been adamant that I thought the MDS was the culprit and although I’m sure she still had that as well, I truly believe that the cryptococcal meningitis + shingles + rhinovirus + enterovirus was too much and activicated the systemic response that caused the HLH to get back into gear. The cryptococcal meningitis had been cleared up that previous hopsital round with amphotericin b, aka “amphoterrible”, and the shingles cleared up relatively quickly. The amphotericin does such a number on the body and then getting rhinovirus + enterovirus, which are just the causes of the common cold, but it was too much for her body.
If it was the HLH, which I believe it likely was, that puts my mind at ease to some degree – because I’ve been beating myself up thinking “If I had just taken her straight to Sarah Cannon, rather than Tennova in Turkey Creek that last time..” I’ve felt like there was more I could have done this entire time, but I’m now coming to terms that there wasn’t. We still got more time out of her than we should have, thanks to Sarah Cannon and also Tennessee Cancer Specialists in Knoxville. I do still wonder if it would have made a difference if we had taken her to the Cleveland or Mayo Clinic.
Ultimately, I’m not sure it would have. I begged her for months to see a doctor, before she had no choice and went into septic shock. I know not having insurance scared her, but I also think she didn’t want to acknowledge the possibility that she had cancer again.
Ignorance is not bliss. Stay up on your blood work.