day +90 post hsct update

If you follow me on Instagram, you know I am much better with updates on that platform! lol I am sorry my blog has been the recipient of so much neglect. Honestly, I have been busy living - truly living! I even start a (very) part time job tomorrow guys! Currently, outlets like Instagram seem to be an easier, quicker mode to update my readers. Plus, chemo fog is still incredibly thick, and busting out a blog post isn't as easy as it used to be - darn chemo brain! lol I'll take it over the oxygen and feeding tube any day though! ;)

My last update was way back at day +50 after a few boughts of CMV. I am happy to report the CMV hasn't come back, however, new problems seemed to arise in the past 40 days. My bone marrow stopped producing for close to 3 weeks, which caused my counts (blood levels that indicate my immune system strength) to plummet back to non-existent! It had my transplant team pretty worried. Talk of starting an emergency treatment such as IVIG was being thrown around. Yuck! Luckily, we figured out the low counts were due to a medication I had been taking that, in a small number of patients, can suppress bone marrow production. Since I discontinued the medication my counts have begun to rise! Woohoo! I am still no where near having a normal immune system, but it's better than none at all! I got myself some delicious ice cream to celebrate.

I had the absolute incredible opportunity to film with the BBC for a documentary series called Amazing Humans. The videographer flew all the way from London to film a woman named Sara, who provides free Henna Crowns to patients suffering hair loss. I was lucky enough to be the recipient, and share a bit of my story! Her kind act empowers patients - and turns them into Queens! It was a fabulous day, and my crown was breathtaking! The video recently aired on BBC and has spread to all corners of the internet! Woah - I am in a viral video! lol How crazy is that?!

I recently began writing for an awesome company called Clara Health. I wanted to link a few articles I wrote since I think they are very important for patients! Their website helps connect patients to clinical trials on one, easy to use platform! It's a million times better than Clinicaltrials.gov, but has all the same information! Super patient friendly - It is amazing. Here is a feature I wrote demystifying a bit of the clinical trial experience, and here is another I wrote about my personal experience as a patient undergoing a clinical trial. If you are interested in branching out of the, "standard care" offered by your clinic, I highly suggest you check them out!

Health wise, I seem to be pretty stable, though some recent stress has caused a bit of a digestive system flare. I've been aspirating a bit, which is never good. Let's hope it all works itself out soon so I don't cause damage to my lungs! My lungs, and POTS still seem to be steady - I still have symptoms, but no where near as severe as they were pre-transplant. My body has been extremely sore, and many of my joints feel as though they are out of place... I have been assured that this type of pain is normal post HSCT. That sucks. I find myself taking Advil often, which I never used to do pre-transplant, so that's saying something! Due to the pain sleep has been pretty non-existent. I see my scleroderma specialist from UCLA next month, and I cannot wait to show him my vast improvements! The transplant has improved my quality of life very much, and I am so grateful for however long this miracle lasts.