Rough day yesterday for sure. Probably the worst Ed has felt since the beginning of this journey, except for the incident with the cooling mat in the hospital. This last chemo (the ARA-C) REALLY put him in the dirt, along with 8 days of antibiotics and antifungal meds IV - they were very strong. His body is just in a really intensely toxic mode from all that so he's feeling super weak, mentally foggy, shaky and full of anxiety because he feels so bad. RN Lisa came and assessed him yesterday and reported to Dr. Menco. They made some changes to his medications and she talked to him at length about the value of continuing consistently with the ones that will help him get better, instead of just resisting and deciding to stop everything at once. I believe he heard her a little better this time so he was more cooperative with it yesterday, but it was rough for sure.
I'm at the office this morning and will go home now to work there so he won't be by himself - it feels too precarious to leave him alone today. I just talked to him and he says he's feeling a tiny bit better than yesterday, so that's a good sign. A couple more days and he should be much stronger. He hasn't eaten for 2 days again, but I'll try and get a few bites of something in him today.
We got word yesterday afternoon that Dr. Menco & Dr. DeVos have agreed that it's best to skip the 6th chemo round (the last ARA-C) because its just too hard on him. He will have his scheduled CHOP chemo next week and then we'll proceed to the stem cell transpslant, but I don't know the schedule of dates yet. Hopefully he'll get a little break, but I know they want to move quickly during the window of time that the cancer is very suppressed and not give it a chance to get the upper hand again.
Thank you once more for the continued prayers and thoughts. It is surely a rough time right now and he has the toughest part yet to come with the stem cell transplant just around the corner. Its a confusing mixture of fear and hope right now as each tough day feels long and unending for him. This is truly a battle to be won by the journey of putting one foot in front of the other each day, even when taking that step feels like crap. And believe me, a lot of days, it does! But his strength and perseverance is amazing as we take turns leading the fight.
Hoping today is filled with healing progress.
Excellent read, I just passed this onto a colleague who was doing a little research on that.
ReplyDeleteHe hasn't eaten for 2 days again, but I'll try and get a few bites of something in him today.
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