Hi there gf. I've been hiding out, waiting for the holidays to pass and the dust to settle. Thank you for the Christmas wishes. I've read along on yours and other's threads. Glad your days were peaceful .Sorry about CMM's gout.
I wish for you a 2020 filled with health, prosperity and beauty. Thank you for all your support over the years. It means a lot. xoxoxo
M 20+ T25+ S ~15.5 (BD) BD 4/6/15 D 12/23/16
"Someone I loved once gave me A box full of darkness. It took me years to understand, That this too, was a gift." ~ Mary Oliver
Well CMM is still suffering from what seems like really severe sciatica which started before New Years. He went for an MRI to investigate it yesterday but couldnt lie still for the scan, it was too painful. They’re going to try again next week.
Meanwhile he got results from last weeks CT scan of his lungs - his main tumor has shrunk a bit, but he has four lesions in the “good” lung that look like metastases, the largest 1.6 cm. We meet with his oncologist today to decide about his next treatment.
I played a couple of music gigs yesterday and the day before; the first one opening for David Lindley. For those of you too young to know, he’s a multi instrumentalist known for his incredible lap steel guitar playing. He played with big names like Jackson Brown and Linda Ronstadt and had a very successful solo album in the 80’s called El Rayo Ex. He covered this Greg Copeland song that I can’t get out of my head - go on YouTube and search David Lindley Revenge Will Come. Also look for El Rayo Ex - Mercury Blues or She Took Off My Romeos for his 80’s hits.
Last night was a house concert at the home of a well known novelist. He teaches at a prestigious college and the audience was full of professors, mathematicians and philosophers, many of whom were also musicians. That was great fun.
I am so sorry that CMM is still suffering. I hope that they can get to the bottom of his issue next week. Hopefully the oncologist will be able to give both of you an update and how to move forward w/his treatment.
I am glad that you are able to get out there and play music. Music is wonderful for the soul and a great outlet for the tension and stress that has been in your life.
Good luck today!
Sit quietly, the answers will reveal themselves when you least expect them to. The past is gone, the present is a gift and you need to focus on today, allow the future to reveal itself when it is ready.
Well the oncologist wants to put him on a new chemo regimen. This involves one standard chemo drug and an antibody drug that works on VEGF ( meaning it inhibits the growth of new blood vessels that feed the tumor. ) I’ve only had a little time for research but it looks like this combination gives a smallish survival advantage (like, 10 months instead of 8).
I’m going to add some things to his adjunctive regimen. He’ll have his MRI of his back next week (doctor gave him some morphine) and chemo should start next Friday.
Prognosis is poor at this point but he has done surprisingly well so far. Hoping he can have another good year.
Gosh, I am sorry to read that he's getting ready for a new chemo regimen. I hope that the survival advantage will be more than 10 months. He's been through so much already and is still here w/you. He's a fighter and I hope he doesn't get discouraged and give up.
I am keeping all of you in my thoughts and prayers.
Sit quietly, the answers will reveal themselves when you least expect them to. The past is gone, the present is a gift and you need to focus on today, allow the future to reveal itself when it is ready.
I have chaga tea and have given it to him although he's not a fan and nt currently drinking it. I'm basing his supplemental tratments on this great book, How To Starve Cancer by McClelland.
Well CMM couldn't get his MRI done yesterday because he was hiccuping! (He has a history of intractable hiccups twice in the distant past - once for 6 months! - and takes a muscle relaxant daily to control them). Hoping he can get it rescheduled to be done before Friday's oncology appointment.
I was mentioned in a very nice interview of my friend who I play percussion for today. I'm going to have to stop calling myself an amateur if I keep getting name-checked in her press
Hoping my middle son gets a new job soon and we can both thumb our noses at his cheap-azz dad. Poor kid, he went to a new doctor yesterday (pain management referred him for trigger point injections). The new doctor repeatedly questioned his diagnosis of Ehlers-Danlos syndrome-hypermobility type and revealed his deep ignorance. "But you're not tall" (Do you mean Marfans???). "Who diagnosed you?" (The geneticist - yes, YOUR geneticist at Kaiser, look in the chart!). "Trigger point injections are only helpful for the neck" (Well, no, lots of EDS patients get relief from injections in the muscles that are spasming around their weak/subluxing joints). At least the doctor refunded his copay and told my son he "learned something", but what a frustrating waste of time!
I know it's a relatively new concept that not all EDS patients look like circus contortionists but really, some of my medical colleagues are really embarrassing. My son is bright and educated and managed to work his way through the system to get his diagnosis, I feel for all the poor people who can't.
There was a winner of the IgNobel prize a few years ago that did a study on how rectal stimulation cured hiccoughs. SNAP - on goes the rubber glove
Although I think he was from Florida and we all know how odd "those" people are
On BD H52, W50 T27, M26 S21, D23 BD-9-Mar-16 D-15-Jan-18 Final-19-Apr-18 I am a storyteller. The story may do you no good. But a story is never for the listener. It is always for the one who tells
HAHAHAHAHA!!!!! I looked in Pubmed and sure enough, there was a letter to the editor report of it working in a guy in the ER who'd had hiccups for 3 days. Hysterically, they reported that the hiccups ceased immediately once they started but that they continued for 30 seconds "in a slow, clockwise fashion" lolol. There are also several older reports of it working.
I will have to ask CMM if his doctors ever tried that, and if so, did they do it in a clockwise fashion?
