I was so excited about the weight increase, that I forgot I hadn't posted after rounds today. Well, the liver levels continue to go down. Dr. Meade was quite happy to see Trish's billirubin break below 25 today. He made no promises (especially since he is going off service tonight and Trish will have a new attending on the floor tomorrow), but he thinks she could be released tomorrow (Wednesday) to IPOP. Assuming all goes well we will be in IPOP through at least the 26th of September, since this is the designated date of re-examination for the cytoxan study she is in. We just finished our longest lap round yet -- 5 laps (walking around the nurses' station. By Trish's post chemo standards this is not very much. Also, I still feel she can't walk alone, just a little wobbly, so while everything is looking up, it still as a bit to go.
Trish feels that the GvH tortures are almost worse than most of the tortures she has endured so far (6 rounds of chemo, hysterectomy, transplant, temporary blindness, hematoma, my cooking...). We are starting to get so close to the finish line we can smell it. This morning Trish was asking Dr. Meade about how often she would have to go to IPOP -- with an eye towards moving back to Aunt Mary's and then to home.
I have written in the past about this sub-culture we now belong to and how we all must learn our new roles through our own school of hard knocks. This weekend I was able to help a sister frustrated, in that she did not know what to do for her sister. I talked another new friend through the options of applying for disability for her significant other. As I had these conversations this weekend, I decided that there was something more I could do to help folks who are new to our situation. I decided I would write a book collecting all of the pieces of information we have discovered over the last two years. How to deal with insurance, how to deal with a large teaching hospital and be an advocate as well as a caregiver. If it helps one person, I will be happy. Between working and care giving, I will start writing. I plan on making it a free download and available in print from Cafe Press -- cause I am not looking to make money, just save some folks some time. One thing I did last night was create a web site for this effort -- nothing to really see there yet, but it is http://www.ohcrapwehavecancer.com . Notice the pronoun is we, not I. A diagnosis of cancer never affects just one person.
Subscribe to:
Post Comments (Atom)
Posts
1 comment:
Chip, in reading this particular blog entry, I was reminded of a group that I recently "tripped across" online. It is called the Well Spouse Association. The group defines itself as "the only national organization focusing exclusively on the needs of all spouses caring for a chronically ill and/or disabled husband, wife, or partner." I thought you might find this interesting. You can find them online at: www.wellspouse.org/
Congrats on the daily improvements. We're behind the scenes reading and following each day. (P.S. I worked with Phil at EAPD.)
Post a Comment