https://www.periscope.tv/w/apSSUDFxTGpHb0JrTnBqSlp8MU1ueG5uQXluVk94T8JYDYojlOnwGCjydLmRwgLJ47g5ltM_uPRV-E4tC32F
ya know how people get in a fist fight when they are angry? yeah, i get in fist fights with my blog. i won the last round. but, we made up. here we are together again
Tuesday, August 30, 2016
wish i had more videos....this was an incredible day. adaptive basketball. balboa park indoor gymnasium. i periscoped a bunch of video....took some with phils camera. but pretty much...just KNOW these guys ROCKED...i was cracking up at phil within minutes. he was slamming that ball. hauling ass down the court, pretty much bumper chairs.....it made me so happy to see him that mobile and that happy. the therapist told him to take it easy and use his wheelchair about 10-15 min a day......so, 4 hours of basketball is how he rolled! hahahahhahah there was a LOT of biofreeze going on those arms saturday night!!
wow! what a whirlwind of emotions swirling through my head. as i have shared previously, i would just love to blog and update every day..
.all day long, stay in touch..
.reach out and be with all of you, share the love, share the struggles, ask for help, connect with others.
it's just super difficult when things aren't going well-- so confusing--- so i just keep waiting for the storms to pass, the down feelings to swing back upwards, the agony to change to joy. and when those feelings don't change, days turn into weeks, and no blog entries...then it gets to be an insurmountable task to update and share.
so, that in a nutshell....that is the genesis of me not blogging.
however, here i am. blogging. no time like the present.
medical updates, please forgive if it's redundant, out of order, missing parts....im just going to sketch the down and dirty and hopefully it will paint a clear picture.
-braf & mek (also known as targeted therapy) been on it about 6 weeks now.
some very minor skin side effects, but NOTHING that cant be handled. a skin rash on phils neck and chin, some kinda thick looking itchy stuff on his upper leg. can NOT handle ANY sun.....we have gone to lathering industrial strength sunscreen products head to toe in the am when we wake up, staying out of any sun during the day, but even going out to the car etc...the sun burns phil and something crazy....like in 5 or 10 min. we have figured out how to enjoy the pool after 3 pm with the shade of the house covering most of the pool. one day phil was grilling burgers, and the tops of his burnt in 5 quick minutes. so much for living in sunny san diego.
-all the radiation side effects, the crazy bowel stuff has settled down, phil was pretty much housebound for a bit there. just explosive and unpredictable.....and the nausea, painful stomach, discomfort has pretty much cleared up.
-the month that he was having radiation, our favy physical therapist as on vacation home to the philippines, and as she returned he returned to being able to go to therapy. so, he started again last week. ella was a little shaken with his decline vs improvement after not seeing him for 4 weeks. she worked him like crazy, but also suggested and agreed to possible day rehab or even a stint inpatient neuro rehab to get him 4-8 hours a day of intensive therapy.
-we went to the va for the first time and had an absolutely insanely fantastic visit with a pcm from the va and specifically got a couple of things going:
FYI we called for an appointment on tuesday and were seen on thursday!
-- a new wheelchair. which we picked up the same day. lighter in weight, specific to his measurements, better cushion support, easier to maneuver
--PT assessment for home, ordered on thursday and a PT home care therapist came friday! the next day. did a home assessment and placed started the process of home modification, specifically a ramp for the front of the house. since there are 3-4 steps and phil is not able to get up them with the walker anymore.
--a referral to the VA neurology, who will assess and hopefully get phil into a rehab unit
other medical updates include:
-gi consult next week
-holding off performing a scope til later, because the bowels may be compromised after the radiation and don't want to perforate anything. so, it would be nice to know if the small bowel tumors have shrunk, not reasonable to find out right now.
-holding off on a pt/ct scan because after all the treatments, all sorts of things will probably highlight and it wont be very diagnostic.....so as it would be nice to know if the meds were working....not going to happen.
-did have an MRI of his c-t-l spine and things are looking very fishy and very yucky.....so, the spinal tumor is growing, into the c spine, t spine, there are additional areas of cysts or syrinx one in the t spine and one in the l spine.
-have an appointment with neurosurgeon, but not till late sept......have no idea why phil isnt walking better and seems to be worse as the days pass. not sure if its the disease process of previous ependymomas or there is something to be taken care of now. we have been calling every few days to see if we can't get in a for a sooner appt...perhaps someone cancels, etc.
its just a big ole decision on how much phil can do to stay upright and do what little walking he is doing or transitionto a w/c.....we had a great discussion with the home PT and just trying to alternate walking and w/c.
the other thing about the braf/mek is that it's really hard to know what the oncologist is thinking or expecting. at first she said definitively, 12 months is a long shot and that was best case scenario, then last visit i got the feeling that she was expecting longer than that.
i try to peg her down every visit.....even tried to get "paula feisty" on her and it's just driving me crazy that she has no clue.
i guess the other thing is that phil and i really thought at the beginning of all this, that we would sort of get on a path and get stable on that path and then go out and tool around in the RV, visit family, screw off, camp under the stars, swim in the sun, play around all day long and enjoy each other and every minute that we had left.
and that's not how this is playing out. there are ridiculous appointments, day after day of "lets see how this goes", stay here for this treatment and that treatment. its just insidious. and who in their right mind would say, "screw it, im going to go camping" when there just may be the next thing down the road that would change the landscape of my life forever.....
just goes on and on and on....til it doesn't.
.all day long, stay in touch..
.reach out and be with all of you, share the love, share the struggles, ask for help, connect with others.
it's just super difficult when things aren't going well-- so confusing--- so i just keep waiting for the storms to pass, the down feelings to swing back upwards, the agony to change to joy. and when those feelings don't change, days turn into weeks, and no blog entries...then it gets to be an insurmountable task to update and share.
so, that in a nutshell....that is the genesis of me not blogging.
however, here i am. blogging. no time like the present.
medical updates, please forgive if it's redundant, out of order, missing parts....im just going to sketch the down and dirty and hopefully it will paint a clear picture.
-braf & mek (also known as targeted therapy) been on it about 6 weeks now.
some very minor skin side effects, but NOTHING that cant be handled. a skin rash on phils neck and chin, some kinda thick looking itchy stuff on his upper leg. can NOT handle ANY sun.....we have gone to lathering industrial strength sunscreen products head to toe in the am when we wake up, staying out of any sun during the day, but even going out to the car etc...the sun burns phil and something crazy....like in 5 or 10 min. we have figured out how to enjoy the pool after 3 pm with the shade of the house covering most of the pool. one day phil was grilling burgers, and the tops of his burnt in 5 quick minutes. so much for living in sunny san diego.
-all the radiation side effects, the crazy bowel stuff has settled down, phil was pretty much housebound for a bit there. just explosive and unpredictable.....and the nausea, painful stomach, discomfort has pretty much cleared up.
-the month that he was having radiation, our favy physical therapist as on vacation home to the philippines, and as she returned he returned to being able to go to therapy. so, he started again last week. ella was a little shaken with his decline vs improvement after not seeing him for 4 weeks. she worked him like crazy, but also suggested and agreed to possible day rehab or even a stint inpatient neuro rehab to get him 4-8 hours a day of intensive therapy.
-we went to the va for the first time and had an absolutely insanely fantastic visit with a pcm from the va and specifically got a couple of things going:
FYI we called for an appointment on tuesday and were seen on thursday!
-- a new wheelchair. which we picked up the same day. lighter in weight, specific to his measurements, better cushion support, easier to maneuver
--PT assessment for home, ordered on thursday and a PT home care therapist came friday! the next day. did a home assessment and placed started the process of home modification, specifically a ramp for the front of the house. since there are 3-4 steps and phil is not able to get up them with the walker anymore.
--a referral to the VA neurology, who will assess and hopefully get phil into a rehab unit
other medical updates include:
-gi consult next week
-holding off performing a scope til later, because the bowels may be compromised after the radiation and don't want to perforate anything. so, it would be nice to know if the small bowel tumors have shrunk, not reasonable to find out right now.
-holding off on a pt/ct scan because after all the treatments, all sorts of things will probably highlight and it wont be very diagnostic.....so as it would be nice to know if the meds were working....not going to happen.
-did have an MRI of his c-t-l spine and things are looking very fishy and very yucky.....so, the spinal tumor is growing, into the c spine, t spine, there are additional areas of cysts or syrinx one in the t spine and one in the l spine.
-have an appointment with neurosurgeon, but not till late sept......have no idea why phil isnt walking better and seems to be worse as the days pass. not sure if its the disease process of previous ependymomas or there is something to be taken care of now. we have been calling every few days to see if we can't get in a for a sooner appt...perhaps someone cancels, etc.
its just a big ole decision on how much phil can do to stay upright and do what little walking he is doing or transitionto a w/c.....we had a great discussion with the home PT and just trying to alternate walking and w/c.
the other thing about the braf/mek is that it's really hard to know what the oncologist is thinking or expecting. at first she said definitively, 12 months is a long shot and that was best case scenario, then last visit i got the feeling that she was expecting longer than that.
i try to peg her down every visit.....even tried to get "paula feisty" on her and it's just driving me crazy that she has no clue.
i guess the other thing is that phil and i really thought at the beginning of all this, that we would sort of get on a path and get stable on that path and then go out and tool around in the RV, visit family, screw off, camp under the stars, swim in the sun, play around all day long and enjoy each other and every minute that we had left.
and that's not how this is playing out. there are ridiculous appointments, day after day of "lets see how this goes", stay here for this treatment and that treatment. its just insidious. and who in their right mind would say, "screw it, im going to go camping" when there just may be the next thing down the road that would change the landscape of my life forever.....
just goes on and on and on....til it doesn't.
Friday, August 12, 2016
oh Mr Rodgers, where are you now?
You Be My Neighbor? (Song)
Written by Fred Rogers | © 1967, Fred M. Rogers
It's a beautiful day in this neighborhood,
A beautiful day for a neighbor.
Would you be mine?
Could you be mine?
It's a neighborly day in this beauty wood,
A neighborly day for a beauty,
Would you be mine?
Could you be mine?
I have always wanted to have a neighbor just like you!
I've always wanted to live in a neighborhood with you.
So let's make the most of this beautiful day,
Since we're together we might as well say,
Would you be mine?
Could you be mine?
Won't you be my neighbor?
Won't you please,
Won't you please?
Please won't you be my neighbor?
Thursday, August 11, 2016
Check this out! Home made ice cycle freezer pops
You can make your own...I made sugar free zero calorie berry flavored and frozen ice coffee
Going to make adult beverage pops next
Tuesday, August 9, 2016
a website I would like to share
This is a little lengthy (65 pages) so please don't feel obligated to read the whole thing.
I have been pretty stressed out lately and was doing some research trying to figure out the specific reasons why and possible ways to alleviate some of my anxiety, anger, grief.
I found it so helpful that it and another article I'll try to post, also, clarified a lot for me. But, also what Phil could be going through and how to address some things, helpful hints and ways to improve coping. Already my day today has gone much smoother, and gave me some good ideas of things I can do now and in the future.
Hope you find it as helpful as I did. The intro did include, you can read all the way through or just some portions.
Sunday, August 7, 2016
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