pie for breakfast

pie for breakfast..

Today, this morning I’m having pie for breakfast since it’s been a rough few weeks and damn it, I want leftover pumpkin pie to help sweeten my day. I’ve not said much regarding my health publicly. I’ve just not felt comfortable enough to.. however I feel I should come clean on some things because I know there are times I don’t look very sick and when I post photos (although usually none of me) it appears I’m doing ok and or doing a lot.. what is not said is that almost of the photos are taken at the same time my doc appt is and to offset these I try and do something however small like getting a coffee just to have something positive on these days. Also when I see people around town it’s on my “good” days (which are about once a week) since I don’t go out much and save up my going out to do errands on these days and also make up does wonders 🙂 It does take all my energy and strength so even if I talk to one or two people by the time I get home I’m exhausted and have to recover.. same for all my doc appts.. even worse when I have to go to Boston.

What has been very much a constant is how much my chronic graft vs. host disease (cGVHD) has impacted me.. I’ve been in the middle of a flare up since the summer. Started off with steroids and lots of topical ointments and creams and when that didn’t control it ( I do have steroid refractory cGVHD) my transplant doc had me on Cellcept which is an anti-rejection med.. was on that for about 2 months along with the same topical things i’ve had to use since it’s on my skin, eyes, scalp, gynecological and also my liver.. went to see my local oncologist a couple weeks ago and my liver function tests show that my liver is more affected then it was the month before.. not a huge amount but enough to show that current meds don’t seem to be working. After consulting with my transplant doc I will do Plan B which is a chemo med infusion.. it will be given once a week for 4 weeks starting on the 3rd.. mentally, I’ve been having a hard time wrapping my head around that this is going to me my 4th chemo round.. it’s also a chemo med I had a bad reaction to when I first had it for my first cancer and though my transplant doc said I should be fine my local oncologist isn’t taking any chances so they have set aside 5 hours for the infusion (not to mention the two hour total drive) to be sure and will have meds at the ready just in case. Needless to say with everything else going on this is just adding to my concerns. I’ve also been dealing with chronic all over pain that is due to the cGVHD.. the cold weather is making it much worse and has me seriously considering moving to a warmer climate during the winter although this wouldn’t likely happy for quite a few years. At the beginning of October I had to have my second surgery in a year which was also related to the cGHVD and still dealing with recovery regarding this as well as some not great news concerning it.. also my eyes are not great.. I went to see a specialist in Boston at Mass Eye and Ear and I’m on drops and an ointment however if on the 15th when I  go back, my eyes are not better they will put me in a trial study.. more trips to Boston and more meds.. I have to say I’m very tired of all the meds and continued issues..

I’m finally telling all this after much internal struggle with wanting to keep to myself and probably needing to open up for words of support and help.. I’m not sure how the chemo will affect me and if I’ll be sick.. therefore I may need to humbly ask of local folks for soups or small dishes that can be frozen and reheated as I may not be able to cook which I so love to do and one of the few things that brings peace for me..

Remembering in the early days of my first cancer and when I had my transplant I know that all the words of love and prayers and thoughts sent my way helped me to heal and feel better.. so here I am again… trying to be open as I was before and maybe along the way I can help someone else as many readings have helped me..

Phew.. now I need a cocktail.. haha.. (j/k can’t due to my liver)

Feel free to ask any questions as I am most willingly to answer..

Thank you for taking the time to read this.. I very much appreciate it..

Posted in My words

“You could find beauty nearly anywhere if you stopped to look for it,
but the battle to get through the days made it easy to forget that this totally cost-free luxury existed.”

~Robert Galbraith (Career of Evil) ~


Posted in Quotes

monday thoughts…

“Bottom line is, even if you see ’em coming, you’re not ready for the big moments. No one asks for their life to change, not really. But it does. So what are we, helpless? Puppets? No. The big moments are gonna come. You can’t help that. It’s what you do afterwards that counts. That’s when you find out who you are.”
~ Joss Whedon ~

Posted in My words