Hello there @twohorsepony, apologies for not welcoming you to the forum sooner. I’m sorry you had reason to find it here in the first place and how upsetting it’s been. I see we both live with myeloid types of blood cancer and are both in the US, although in my case it’s Polycythaemia vera ('PV') and California rather than Myelodysplastic syndrome ('MDS') and Pennsylvania. Howdy over there!
I see dear @Ceri_BloodCancerUK has pointed you towards Blood Cancer United which is similar to Blood Cancer UK but has more information localised to the US and is also great. They have some useful information about Myelodysplastic syndrome ('MDS') that may be of interest: https://bloodcancerunited.org/blood-cancer/myelodysplastic-syndromes-mds/diagnosis
I wonder, have you checked out BCU’s information and support? Like here they also have blood cancer information specialists who can be emailed and called free Monday to Friday 9 am to 9 pm (Eastern Time) on 1-800-955-4572. BCU hold free conferences around the US which are very informative and we get to meet other folks there also living with similar conditions and hear from experts at lectures. Highly recommended, you can read more here: https://bloodcancerunited.org/resources/educational-resources/blood-cancer-conferences
BCU also has a community like this forum where there’s lots of interesting blood cancer-related information and other survivors sharing experiences, you’ll find that here: https://bloodcancerunited.org/resources/patients/community
Have to say, looking at the various test results and gene mutations you’ve shared I’m not surprised it’s confusing you—it is very confusing! That’s why we need experts with these complex diseases. I’m 3 years in from my diagnosis and would say it takes time but following along your blood test results each time will help them become more familiar. I’m definitely still learning.
From my non-medical understanding, at a cellular level the BMBs you’ve had will show any transformation of disease, maybe you could compare results from those? These questions are best asked of your specialist who did the testing, they’ll explain why they did them, what they found, and what to expect going forwards.
If my haematologist explains something new or beyond my understanding I just ask him to explain in plainer language! I also ask my nurses questions about my test results when I see them as they often have great practical tips, maybe yours too when you pop in for CBCs?
As for your final very poignant question @twohorsepony, it’s really tough living with something in the long-term that is also low-risk. The Polycythaemia vera ('PV') I live with is considered a chronic type of blood cancer, is incurable, and currently has no way to gain remission. It could be worse, it could be better, and of course I’d love not to have it at all. Acknowledging the reality of it does help though, I hope it does for you sharing these difficulties here.
Something I practice, but have yet to perfect, is reassuring myself that despite the slow dread of having a chronic, slowly developing illness it is less risky than an acute, fast-changing one. Polycythaemia vera ('PV') can in some cases change into Acute myeloid leukaemia ('AML') so I can likely empathise with a similar sense of threat to you of watching and waiting. Isn’t it vile?!
I try to see the slowness of the disease progression as offering more time for further treatments to be found. It helps me at least, but is easier said than done. You have options for further treatments so they are something to research with your doctors. Don’t forget, stay away from Dr Google and AI, they do not know your unique health history.
Do let us know how you get on and do consider giving Blood Cancer United a call, I bet they have resources available for you too @twohorsepony.