franny is soooooooo scared!!!! spooky!!!!

Wednesday Torrey pines hike with my best buddy Claudia! aka T.

Pretty San Diego sky running in the evening

my brain feels like MASHED POTATOES

so, here we are.
fighting the good fight.
this shit sucks
if its not one thing its the other.
melanoma is definitely gone from the small bowel
so, thats very nice.
double checked with the oncologist today and just confirmed expectations for the braf and mek to continue working.
i have my hopes up to a few years and thought that i had made it up, because i can pick and choose what i want to read and listen to.
she confirmed that she expects about a year.

went to the neurosurgeon on thursday with new MRI of the spine, i was confused with the reading because all of a sudden i couldnt really tell where the tumor(s) was and if it was growing,  etc
apparently, "the tumor" is not A tumor, but diffuse tumors along and in the spinal cord that are no longer amicable to surgical intervention.
so, was basically told by the neurosurgeon he is at the end of the line with surgical intervention right now.
referred us to neuro oncologist at UCSD to have them addressed "medically"  (which is really either by medication and/or radiation)

ran it by oncologist that treats the melanoma and pretty much thought it was a good idea, but medically or chemo is not an option to treat the spinal tumors because 1) it does not have efficacy 2) if its tried that would mean melanoma meds that are working would be stopped and that aint a good idea.  guess we go see him and get ideas,

there is talk of the neuro oncologist sending to radiation oncologist and perhaps getting radiation to the spine to slow those tumors down.

so basically, yeah!! we have a year or so till the melanoma goes crazy, but in the mean time, get spinal cord injury so bad that its disabling.

which in intself is okay, i suppose people go around in wheelchairs and have a life.  we just need to figure out how that looks.

the VA has a regional program with hubs of spinal cord injury primary care and phil was accepted to their program.  which is HUGE.  there are alot of opportunities and this is what has happened over the last few weeks.

was accepted to the program
had an inital couple hour visit to met the physician and staff
yesterday, went to their PT/OT/rehab clinic and was assessed and fitted for a custom wheelchair.
hopefully it will be something lightweight that phil can manage himself from the truck.
started PT there, which is good because its all spinal rehab, its in lajolla, so short drive, is going there 2 a week now (has completed his outpatient PT with ella and cancelled project walk)
set up telemed and now has the capability to have "clinic" visits from home via video

so much spinal support there, that i dont even know what i dont know.

as you may be able to tell, adjusting to the new normal.
we may be slow learners, it seems that we should be able to have anticipated this, but adjusting to not being able to reverse the inablity to walk sucks.
we are adjusting to what the the day/weeks will look like
its just super weird to not be industrious in a workplace.

it also just sucks not being able to plan anything
or a future
or anticipate anything.

things that are good:
- had a nice visit with maryann and phil
-had a good visit with maxy and his girlfriend sarah
-phils sister susie and family are coming for fall break
-the weather is spectacular and we were BOTH in the pool exercising today
-side effects from the endoscopy were NOTHING
-we are set $$ wise, so no worries there
-phil is still cute
and smart
and funny
and caring
and my #superphil


so, there ya have it....mashed potato brain.
however, as usual, if i blogged more, betcha a million dollars i would feel better, cause i do now.

try to keep ya posted as life changes.

-

sunday paddle with my girlfriends plus ms sarah!

Sarah

claudia and gretchen

lori

hey, here is my "personal statement" for school

decided to apply for a masters degree in nursing w/ family nurse practitioner.

here is the first draft of my personal statement:

 How I became the "Accidental Nurse"

After a seven year stent in the US Army, becoming a Radiology Technician and a Certified Respiratory Therapist, my main goal in life was to go to college—I had no idea how that would look, what I would study, how it would impact my life for years to come.

I was accepted into a BSN program and began a three year, year round, full time program and graduated as I now fondly refer to myself as the “Accidental Nurse”.  I had very little idea of nursing as profession, even after schooling.  I understood the theory, I understood lots of practical assessment and skill related information.  But, I really didn’t understand how I would take those skills and apply them to a daily practice.

Because I had invested seven years in the military, I was attracted to returning to the military as an officer in the nursing corp of the US AirForce.  I completed a four year tour in the AF and was utilized as the military had needs, four years in labor, delivery and newborn care, as the military has a very young population and quite fertile.  Again, I mastered the skills and readily performed efficiently and was a productive member of the nursing corp. 

However, after a four year tour, I was not anywhere close to merging my own nursing theory, my own concepts of health, wellness, compassion or helpfulness with practice.  As I followed my spouse on an adventure of 20 or so years of geographical locations across the nation and across the pond, I slowly developed a deep set yearning to deal with clients, patients, beneficiaries, HUMANS, with a sense of addressing immediate needs and anticipating, educating, facilitating their care to address their overall wellness, their whole person-mind/body/soul, assist them with taking any modes of control of their health that they could. 

Throughout my job history and the progression of my work, I have been able to meet my patients in their realm, and assist them to a higher level of wellness.  Weather that was working within a HMO type of customer service environment, having them learn to navigate the healthcare system for an improved outcome, or work within the system to utilize services, make the best of their primary care, or manage themselves with specialty care.  Working in community care to assist in coordinating care as a case manager, became one of the closest positions I’ve had, assessing clients with their initial needs, and then assisting them to develop and become owners of their own health.

Throughout this process of working in different staff nursing positions, managerial positions and within the insurance industry as a utilization manager and case manager, I have finally moved from the fortuitous nurse to the nurse with a core statement and the understanding of self and client to pursue a higher education to improve my practice.  The experience throughout different modes of the healthcare environment, the difference in geographical and socio-economic areas, has broadened my understanding of different clients, different needs, different understanding of the system, of their health, of their ability to improve their own health.

Because of the growth of my own and the maturity of my nursing practice, the opportunity to pursue a higher degree, Masters in Nursing, would be ideal to take all the moving pieces of my experience, my strong desire to assist patients/clients into their own health, wellness to achieve their optimum selves.

I am sure that this program would be a great match for the school and me, as I am eager to participate fully with the curriculum for the enrichment of my practice and for the enhancement of the school.

sunday funday runday

Saturday bike ride at ft rosecrans

 

 
 
 

Mary Ann & Phil visit ...went GREAT!

Really happy that they made the trip, especially because Phil wasn't in the hospital and not nearly as stressful for all ;).

They got some good one on one time with Phil and Phil with them.  And, I got a good amount of the same time for some much appreciated alone time.  

Lots of here and there appointments, etc

Hopefully, it was as nice for them.

On their way home, just took off and looks like air traffic is in their favor and fingers crossed they get home without any delays from the east coast and hurricane matthew.

 

 

 

 

I swear Maryann and Phil are here

I just keep forgetting to

Take any photos.  Will do it tommorow! Promise 

mummy

 I was trying to swipe materials in order to make a mummy for Halloween decoration.  Not quick enough.

Mold for a new appliance to assist walking. 

Fun 
 

100 miles at camp pendleton bike ride....it was a toughy, for sure!!!!

dave and phil, then

seriously, i dont think this could be any sweeter!

Phil's AirForce Academy roomate, Dave came into town to spend time with Phil.  It was just super kind and sweet of him to come and hang out with Phil.  Escorted him to some of his appointments and offered such a good change in pace for Phil, as well as a nice little break for me.  Still a great conversationalist and I believe they could sit and talk about the world together forever.

Dave brought a the picture on the left framed for phil, taken in daves home/backyard during one of their visits from the school.

the first night, there was a group five way call that was hilarious.   not sure where anyone found the pictures, but they kept popping up mid conversation.

 commisionings, 1991

Rich

Lane

cutest of them ALL, Phil

Dave

Aaron

friday swim pics