The stem cell journey:
krys v ms, 2020
Saturday, January 25th, 2020
Krys vs. Multiple Sclerosis
Last chemo. Done. When it comes to the chemo, it's a knockout! 4 - 0.
(OK, sure, I might not feel effects for a while, but the medical team here is confident I'll do fine.)
Next up: My STEM CELL TRANSPLANT!
This coming week should be the hardest week of all, as I will have a much diminished white blood cell count (although stem cells will be infused back into me). I will go through a period called "neutropenia" where I will be left with a much diminished immune system, much like that of a newborn.
I have to quarantined for a few days as I recover, and looking ahead, I will likely need some months before I can go back to "normal as usual." More on that later.
For now, I'm trying to make the most of this rollercoaster journey.
Thursday, January 23rd, 2020
STEM CELL HARVEST WENT WELL!
I had to undergo surgery to get two catheters placed in me (including this bothersome one on my neck), but the short-term discomfort is worth a brighter, healthier future.
[Left: Image of me holding up a peace sign after stem cell harvest.]
Sunday, January 19th, 2020
Week 2 Update
Hi Everyone! I’m generally low in energy these days, but wanted to use up some of my battery power to let you all know…
1) I’m OK!
2) The incredible gratitude I feel to all of you who’ve supported my journey.
I started my first two rounds of chemo last week, and this upcoming weekend, I'll get back in the ring again for Rounds 3 and 4. (Then it'll be transplant time!)
Prognosis has been good so far. Aside pesky, pre-existing issues with pain and sleep, I’m doing quite well. It hasn’t been an easy experience by a long shot: moments of this trip have been downright frustrating, annoying, boring, long, painful.
Meditating, however, grounds me, and I start to re-examine the situation: I'm a good candidate for this procedure. This 'hell' is only temporary. It is actually quite great to take a break from the world and reflect.
I will get through this. And I'm grateful to have the opportunity to both start my life anew as well as share the journey.
Much love, light, and gratitude!
CALL FOR HELP: PREPARING FOR CHEMO-BASED STEM CELL TREATMENT TO BEAT MULTIPLE SCLEROSIS
Sunday, December 29th, 2019
5 days until #KrysBeatsMS
Right now, I'm reaching out because I still need a good amount of immediate support to lessen the burden on my family: my parents are elderly, working-class immigrants who've already lost a son, and my disabled younger brother just came out of hernia surgery.
If you have some resources & capacity to spread some holiday cheer, I'd be incredibly grateful to anyone who could glance through this list and provide some support. I can be reached at firstname.lastname@example.org.
WAYS YOU CAN HELP ME (KMR) NOW:
The most obvious way to support is through a recurrent donations:
- Donate to gofundme.com/krys-beats-ms;
- VenMo (@KrysMendez88);
- Paypal (email@example.com).
(Note: Other arrangements can be made, but not while I'm quarantined in the clinic. If you don’t have access to these accounts and want to help, you can reach out to someone who does.)
ITEMS NEEDED DURING THE STEM CELL TRANSPLANT
A) Hygiene/Cleaning Supplies
- Hand sanitizers and cleaning supplies for electronic devices (e.g. laptops, phones, a borrowed X box, etc); medical gloves, masks, hand sanitizers, etc.
B) Medications (current and post-treatment)
- I'll need help re-stocking medications I've been taking regularly for years, and which can be bought OTC (over-the-counter) in Mexico.
C) Products to Help Manage Chemo, Fatigue, and Pain
- CBD products--those *without THC*--work quite well for me.
- I'm also open to trying homeopathic herbs & ointments/topicals (with doctors' approval). Not to mention exercises and physical therapy routines.
POST-TREATMENT SUPPLIES & NEEDS
D) Extended Housing in Monterrey
- My parents and I decided it made most sense to stay another month in Monterrey because February in New York City--historically one of coldest months in one of the germiest & most crowded cities in Americas--sounds too risky for someone with a baby immune system.
- If/when possible, I will try to come up with an average estimate for a hotel, house, or Airbnb in February, with some possibility of extending this to March. The location would need to accommodate a wheelchair/walker and need to be in a less populated & well ventilated environment.
E) Transportation Costs
- Mostly for transportation assistance to medical appointments (particularly when I return to NYC or SD).
- Without enough time to apply for Access-a-Ride, my father and I have easily spent hundred$ in the last 6 weeks alone in New York City. I no longer have an income, and my father has a limited pension as a recently retired janitor.
F) Co-pays for doctor visits and Rxs.
- I've been using a walker now for nearly six months; the road to freedom of movement and unassisted walking will require even more intensive physical therapy (PT).
and last but not least....
G) Fun things to do while sick & quarantined
- Thanks to months of illness, I've already spent countless hours going through shows and movies on Netflix & Amazon Prime. Boredom & pain make a horrible mix.
- Anything bingeable I likely haven't considered?
- Any *light* reading (pref. Spanish/English literature)?
- Any other thoughts for how to maintain my sanity between chemo and keeping it together around family?
THANK YOU ALL FOR HELPING ME GET TO THIS POINT!
I will do my best to provide periodic updates, from the clinic and during post-recovery.
It might take a while to see the benefits, but I can finally say: MS, you’re going down!
a mendez x-mas
Sunday, December 29th, 2019
5 days til #KrysBeatsMS!
Late as always in posting holiday pictures (#criptime). Here I am with my parents and brother.
Any support right now would be much appreciated! Helping me re-adjust to New York City has been taxing on my elderly parents and disabled brother, so all forms of support are welcome!
You can read about me, share my story, (and if you can) donate here:
— at Ozone Park, Queens, NY.