Long over due (though not alot) update

It has been another long while since I've written here. I update on fb but not very good about coming here to update. Sorry for any who read this and aren't on fb!

                                                         

   

Not actually a lot to update really. Still struggling with the ever annoying, ever increasing in size parastomal hernia and ostomy. I saw my General Surgeon the other week who then talked to a colleague of hers on the colorectal side and saw that dr. earlier this wk. This 2nd opinion was very nice but clearly very skeptical to do anything with the ostomy prolapse and hernia due to my underlying MPS I and the cancer. Honestly it is very frustrating when drs. repeatedly go around to how this cancer will be terminal and she wasn't sure fixing it would help longer term. I do understand this thinking but feel quality of life is important in the grand scheme. She in turn talked to Dr.Henkel who sent me a mychart msg today.

The plan is after I have the CT Scan for Oncology and see him then my General Surgeon will talk to him, see what his thinking is and if stable (please God, I beg that it is ) she said we could discuss how to deal with this. I pray (as much as I don't want surgery) that we can somehow fix this and make it less noticeable and thus also the ostomy not leak so much. Please pray if you will. 

Otherwise I saw Rheumatology last wk and restarting the humira (was my decision to stop it for a little while). The benefits are worth the small increased risk for infection and heart failure so this should perhaps help the seeming increased joint stiffness. 

I see Cardiology next months with Echo. Sadly my Cardiologist (for 11yrs in August :( ) has left CHW and moved to a new practice in Chicago (where he is originally from so I was not to surprised even if it stinks). I am seeing 1 of his newer colleagues; Dr.Gerardin who trained at both UofMn and Emory - 2 MPS treating centers. I've emailed with her numerous times since she has been at CHW re our mutual interest in MPS and see seems very nice so I am hopeful she will fill Dr.E's very tall shoes! I will definitely miss working directly with Dr.E's nurse (Jane) who is woeking w/other Cardiologists now.  There where concerns for R heart failure and some other pulmonary-heart issue on last scans so hopefully that isn't a big issue (but no one seemed overly concerned so maybe a good thing). 

I say it every time but will try to update again sooner then this last time!

Thanks for stopping by,

Erica

Other 

Long time update...

It has been a really long time since I updated this... 5mo apparently. I often think about doing so but then don't.

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!        

Christmas came and went and so weird now, 3mo later to be locked down essentially in our homes due to the coronavirus pandemic. This I

s the rare time I might actually wish I lived with someone vs alone!
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