Really a lot has gone on since back in early fall but at the same time not a lot has. In Dec. I had another surgery for the colostomy and to see if the primary cancer mass could be removed (it could not). I did 2 wks of (intense!) radiation getting done in 2 wks what most receive over 6wks apparently. At the time I did not realize it was so much and honestly I think i'm glad I didn't know!
I've been on the oral drug now since last fall and has been ok. I've seemed to find the ways to prevent side effects (eating before taking it for 1!) and lots of lotion but otherwise I can't complain to much. CT Scans done about 3mo after diagnosis showed the main cancer area had stayed stable-no changes and the smaller lung nodules appeared to have shrunk with the 1 being virtually un-detectable now. That was an AWESOME result and also surprising to both my Cancer dr and I (I think he was almost taken aback honestly but not unhappy!). Was nice to get some not bad news about that all and to have seemed to surprise my team.
Plaque given at a get together my Church held
Special Educ. Sunday - a really nice get together!
In all reality though its a fairly uncertain and a little unnerving time. I am glad to live close to my parents now as my Dad drops food off my Mom has made but in truth its like we are so close and yet so far apart. Easter is in just 2wks (?) and its just mind-blowing really to know we'll all be apart this year.
My Church has been doing online and video services and honestly I am incredibly appreciative for those! A continual reminder God has this and to not stop trusting!
The symptoms I was admitted by my PCP to St.Mary's for a mo or so ago have slowly crept back and cause a endless cough that gets worse if I sit back or as the day goes on. PCP and Cardiology have upped the meds to get fluid off again which helps a little but this cough is nagging and super annoying!
I started the new study/compassionate approval drug about 4wks ago vs the Aldurazyme I was receiving (for near 15yrs every wk!). Honestly the seeming cardiac stuff has been so constant during this that its a little hard to tell if there are improvements. I do think it's helped joint discomfort atleast. a little though. I am grateful to have been approved for it and we have enough for 1yr. We had tried speeding the rate up to just under 5hrs but are going back to around 6hrs starting tmrw due to the cough and other symptoms get worse by the end. I LOVED getting done an hour earlier but at same time the slower time will be worth feeling better after I guess.
Say a prayer things calm down in this country and nationally and that God willing this coronavirus pandemic goes away. I worry some about it for those I love and feel a lot stir crazy cooped up!
Thanks for stopping by,
Erica
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