I have been away from awhile and just saw your post to Jamie.
You are always in my thoughts....I hope you are doing well. Please post an update. We all love you!
I am still here. Not feeling well, tired from radiation. But it seems to be making my leg feel a bit better. I am worn out from doing ALL the leg work of getting me in the ipi compassionate use trial. I have had nothing but roadblocks for any targeted therapy, even though I know that's what would work best for me. I am tired of fighting that losing battle. I just have too many things that exclude me. So I'm trying to get behind this ipi plan but Iam so so sick and tired of doctors and their offices dragging their feet and not doing what they are suppose to do. Hello - your job people! Me - the patient, suffering, dying blah blah. Handle your own administrative shit. But no, as I learned long ago: You the patient have to drive the bus. If you don't then nothing gets done. I learned that from a very smart man. One who has lived this life of professional patient far longer than me. But I am nothing if not a stone wall of determination.
So I am headed to bed for a nap. I will continue with skeletal radiation for a few more days then get started with the ipi compassionate use trial. Also squeezing in a million other family responsibilities. Including my daughter's 15th birthday! A milestone I am blessed beyond belief to be celebrating tomorrow.
PS - Good news in the brain front, LMD seems smaller & decreased in activity and my spinal fluid has stayed clear! Yeah! Intrathecal IL2 may suck but it can sometimes get the job done.
I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"
HEY GIRL.....SO good to see you posting. You are an inspiration to all of us here. You are one strong woman, one strong fighter. on terrific warrior, and an example to everyone here. Glad to see you are getting some relief from the radiation. Hugs to you.....
I am sorry you have to fight so hard to get anything done ....You shouldn't have to do that....But, now I'm fighting to get an appointment for Jim with the VA....He hasn't been in in over a year.....so they can't just send to ever they assigned him to before, no, we have to go thru admissions and get sent to a new PCP, before we can get in. Jim is having groin pain, he can not sit up (drive), it hurts to walk, He can recline and that is all he has been doing for about 5 to 6 weeks...Finally, says he wil go.....then probably can't get in for yata, yata, days...etc...you have to do this, yata, yata.I am fortunate enough to have a wonderful daughter-in-law that is trying to help me get all this arranged. Jim only worked 5 days in Sept...So, only 1 day in October. He is in direct outside sales, where to go to the company.....well, it's straight commission....so no money coming in either....He now has numerous tumors over his body. The patients should not have to fight so hard to get help.
Thinking of you daily, and see your updated on
My mom is still making her blue-jean quilts.....news one every week.
Sherron, wife to Jim
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