is
slated
to
begin
tomorrow
morning
at
9am.
please send light.
c.
Monday, February 22, 2016
Tuesday, February 16, 2016
just so you know X2
a bit more of explaining.
two questions were answered by the radiologist:
one was my desire to get a biopsy to confirm cancer in the nodes.
we looked at my scans together which provided outstanding context.
she showed me where the nodes are and how two little ones are near the surface
and the biggest one is right beside the original pee-squeezing tumor.
she said she is 90% sure the big one is cancer.
she said even if we biopsied one of the little ones and it can back negative
she would not believe it given the looks of the bigger node.
and that big one, its so far in it would be risky to biopsy.
number two is that i was really feeling concerned about the original tumor
and the chance that it may have seeded.
on the PET scan it is not showing itself
i was told though if its less than a centimeter it won't show up.
unsettling.
asking dr. uppal this is the way they do it.
you just can't know.
yuck.
i don't like that.
so this radiologist told me that because the 'tumor' and the node are right next to each other
we can point the big boom booms at the tumor too.
well that made me feel better.
git it gone.
like so many other happenings in my life
i am about to embark on doing something i never thought i would do.
I'm feeling good about it in my guts though.
a lot of white light will be going up in there.
i hope to be starting sometime next week.
lets talk about this more later:
how i want to acknowledge that it may be difficult for you to reach out to me.
lets talk about the uncomfortableness of disease and facing mortality.
cause i feel it effecting me.
and i want to be close to you.
and i want you to hold me sometimes.
c.
two questions were answered by the radiologist:
one was my desire to get a biopsy to confirm cancer in the nodes.
we looked at my scans together which provided outstanding context.
she showed me where the nodes are and how two little ones are near the surface
and the biggest one is right beside the original pee-squeezing tumor.
she said she is 90% sure the big one is cancer.
she said even if we biopsied one of the little ones and it can back negative
she would not believe it given the looks of the bigger node.
and that big one, its so far in it would be risky to biopsy.
number two is that i was really feeling concerned about the original tumor
and the chance that it may have seeded.
on the PET scan it is not showing itself
i was told though if its less than a centimeter it won't show up.
unsettling.
asking dr. uppal this is the way they do it.
you just can't know.
yuck.
i don't like that.
so this radiologist told me that because the 'tumor' and the node are right next to each other
we can point the big boom booms at the tumor too.
well that made me feel better.
git it gone.
like so many other happenings in my life
i am about to embark on doing something i never thought i would do.
I'm feeling good about it in my guts though.
a lot of white light will be going up in there.
i hope to be starting sometime next week.
lets talk about this more later:
how i want to acknowledge that it may be difficult for you to reach out to me.
lets talk about the uncomfortableness of disease and facing mortality.
cause i feel it effecting me.
and i want to be close to you.
and i want you to hold me sometimes.
c.
Thursday, February 11, 2016
im so excited for radiation!
i know you think i am messing but I'm not.
i went in like a water bag thinking of my little girl.
how i was afraid she would forget me.
literally.
this has been what the last few weeks have been like.
(oh what a waste my parents have spent so much time fixing up this apartment!)
like that.
yet-
rebirth today.
hope renewed.
gratitude angels.
yes master kim.
context changes everything.
c.
for celebration some celebratory mugs of the last month's thingies.
i went in like a water bag thinking of my little girl.
how i was afraid she would forget me.
literally.
this has been what the last few weeks have been like.
(oh what a waste my parents have spent so much time fixing up this apartment!)
like that.
yet-
rebirth today.
hope renewed.
gratitude angels.
yes master kim.
context changes everything.
c.
for celebration some celebratory mugs of the last month's thingies.
Tuesday, February 9, 2016
still a waiting pause and thank you.
i'm waiting to hear back from my oncologist on many fronts.
its hard to wait.
master kim is helping me empty my brain.
i am very touched and feel wrapped in layers of light and hawaiian rainbows from so many of you.
when i fall into the pit i pull on visualizing that light.
i was wanting to respond to everyone personally
and i am feeling ashamed i have not been able to do so.
i want you all to know how much i want you round.
and i want to say thank you.
please stay around.
please know I'm absorbing your love.
imagine me peering into your eyes and a twinkle.
thank you for loving me.
c.
its hard to wait.
master kim is helping me empty my brain.
i am very touched and feel wrapped in layers of light and hawaiian rainbows from so many of you.
when i fall into the pit i pull on visualizing that light.
i was wanting to respond to everyone personally
and i am feeling ashamed i have not been able to do so.
i want you all to know how much i want you round.
and i want to say thank you.
please stay around.
please know I'm absorbing your love.
imagine me peering into your eyes and a twinkle.
thank you for loving me.
c.
Saturday, February 6, 2016
the very next day.
accupuncture 8:45.
i had an epiphany on the table while laying on my back.
10:15 dr bartolme.
new information.
so i have all along been giving myself injections of homeopathic mistletoe.
apparently these can cause inflammation in nodes.
so maybe those nodes are not cancerous. the report did say 'highly suspicious.'
dr. b. is going to speak with the radiologist to get the exact measures from the PET.
that will help him to know which side we are leaning on.
and we discussed the CAT I'm scheduled for this evening re the stone.
we concluded i could simply request the not very invasive surgery to remove it.
skip the CAT.
if it had been there since august as i suspect it has
it may be too big to pass.
and even if its not, lets just get it out cause i have lots on my plate here and
removing it would make it more apparent hopefully
where the pain I've been having is coming from.
i wrote to dr. hollingsworth and cancelled the kitty.
3:30 dr. lu.
total downer.
so did i mention before I'm one of those 5% wherein the cancer hides and
often cannot be detected?
not the kind of lotto i really want to win but okay god.
so dr. lu who is incredibly skilled
can not give me a clear diagnosis.
he does think the original tumor is still there
and that it may have seeded.
he said he was nervous.
and he looked nervous.
and i no likey.
7:30 jennas dear friends who are cancer biology researchers at the university
responded to my call by inviting me over and plying me with handmade indian food.
they are officially now angels of my way.
they agreed to help me find a patient advocate at the university,
and help me get an unofficial second opinion.
they have also agreed to try to get me into their current lab study
where they take tissue samples and analyze them to literal bits
to see if new information can be gleaned about the specific cancer.
and
they connected me with a site that has studies on a specific new drug
in the industry that has ben successful with many ovarian BRAC1 platen-sensitive cancers.
like mine.
its at carmanos, I'm going to check it out.
sometimes i feel like i might just have a couple years to live,
and I'm trying to be okay with that.
sometimes i think there will be a miracle.
sometimes i think the hard work i am doing on my patterns will pay off.
all i know is that i love my girl.
thats where all my eggs are.
please keep praying positive and if you can leave your comments on the blog proper.
then when i need a cheering squad everything will be in one place for me.
you all have been amazing sending your love.
its warming me up.
bless you.
c.
i had an epiphany on the table while laying on my back.
10:15 dr bartolme.
new information.
so i have all along been giving myself injections of homeopathic mistletoe.
apparently these can cause inflammation in nodes.
so maybe those nodes are not cancerous. the report did say 'highly suspicious.'
dr. b. is going to speak with the radiologist to get the exact measures from the PET.
that will help him to know which side we are leaning on.
and we discussed the CAT I'm scheduled for this evening re the stone.
we concluded i could simply request the not very invasive surgery to remove it.
skip the CAT.
if it had been there since august as i suspect it has
it may be too big to pass.
and even if its not, lets just get it out cause i have lots on my plate here and
removing it would make it more apparent hopefully
where the pain I've been having is coming from.
i wrote to dr. hollingsworth and cancelled the kitty.
3:30 dr. lu.
total downer.
so did i mention before I'm one of those 5% wherein the cancer hides and
often cannot be detected?
not the kind of lotto i really want to win but okay god.
so dr. lu who is incredibly skilled
can not give me a clear diagnosis.
he does think the original tumor is still there
and that it may have seeded.
he said he was nervous.
and he looked nervous.
and i no likey.
7:30 jennas dear friends who are cancer biology researchers at the university
responded to my call by inviting me over and plying me with handmade indian food.
they are officially now angels of my way.
they agreed to help me find a patient advocate at the university,
and help me get an unofficial second opinion.
they have also agreed to try to get me into their current lab study
where they take tissue samples and analyze them to literal bits
to see if new information can be gleaned about the specific cancer.
and
they connected me with a site that has studies on a specific new drug
in the industry that has ben successful with many ovarian BRAC1 platen-sensitive cancers.
like mine.
its at carmanos, I'm going to check it out.
sometimes i feel like i might just have a couple years to live,
and I'm trying to be okay with that.
sometimes i think there will be a miracle.
sometimes i think the hard work i am doing on my patterns will pay off.
all i know is that i love my girl.
thats where all my eggs are.
please keep praying positive and if you can leave your comments on the blog proper.
then when i need a cheering squad everything will be in one place for me.
you all have been amazing sending your love.
its warming me up.
bless you.
c.
Thursday, February 4, 2016
a new chapter.
i had an outoftouch feeling about this upcoming chemo.
i couldnt picture it inside my head.
i somehow knew it would not happen.
it didnt.
my white counts were not high enough to receive it.
that hardly mattered,
the 2 cancerous nodes have apparently become resistant against the chemo.
those nasty bastards.
dr. uppal recommends targeted radiation.
the thought of this makes me want to throw up in my mouth.
i really did not want this.
dr. miller and i had a chat.
we decided to transmute the death ray into a healing beam of pastel light.
that way i can do the radiation and it will be only helpful.
'be stupidly optimistic' he said. 'so much so that people think you are crazy.'
okay well game on there.
i have relented and decided to get the recommended CAT scan to determine the kidney stone size.
that way once its out we can hone in closer to what is causing my lower back pain.
(i do believe the stone been sitting there since late august).
tomorrow:
accupuncture at 8:45
appt w/ dr. bartolome at 10:15
appt w/ dr. lu 3:30pm
CAT scan at 5:30pm
if you want to surprise me with a litter of puppies i can roll in in between any of that
please please seek me out.
c.
oh and if you want to send chi or healing loveness please to make it positive in its intention
instead of angry or scared or dark. i would so very much appreciate.
i couldnt picture it inside my head.
i somehow knew it would not happen.
it didnt.
my white counts were not high enough to receive it.
that hardly mattered,
the 2 cancerous nodes have apparently become resistant against the chemo.
those nasty bastards.
dr. uppal recommends targeted radiation.
the thought of this makes me want to throw up in my mouth.
i really did not want this.
dr. miller and i had a chat.
we decided to transmute the death ray into a healing beam of pastel light.
that way i can do the radiation and it will be only helpful.
'be stupidly optimistic' he said. 'so much so that people think you are crazy.'
okay well game on there.
i have relented and decided to get the recommended CAT scan to determine the kidney stone size.
that way once its out we can hone in closer to what is causing my lower back pain.
(i do believe the stone been sitting there since late august).
tomorrow:
accupuncture at 8:45
appt w/ dr. bartolome at 10:15
appt w/ dr. lu 3:30pm
CAT scan at 5:30pm
if you want to surprise me with a litter of puppies i can roll in in between any of that
please please seek me out.
c.
oh and if you want to send chi or healing loveness please to make it positive in its intention
instead of angry or scared or dark. i would so very much appreciate.
Wednesday, February 3, 2016
cram it all in there OR suspended in jello.
I relent I have strayed.
it's been difficult to write.
I feel like someone is watching me.
it's the watching that causes me to fold inside myself.
hide my real beauty.
this will now here be an old fashioned solid update.
so peewee came out.
some days later I noticed some lower back pain.
some back pain that reminded me a lot of sciatica.
actually it felt like a lesser intensity of the pain I had had that got me re-diagnosed.
but I knew that pain.
i've also continued to have pain in my groin around the area where the tumor is located.
I contacted Dr. Uppal and gave him all this information.
he replied by ordering a PET scan a complete CBC and a urine test.
oh and an ultrasound of my kidneys!
yeah I wass shitting a brick too.
so today being Tuesday all that is done.
I was supposed to get the PET results the day after
yet I'm still waiting.
oh and they did enter them into my records so I CAN read the results online
even though I CANT UNDERSTAND THEM!
I can understand just enough to freak the fuck out of myself. excuse me.
part of the reasons I'm waiting is because I realized I don't want to get the results of these critically important tests from someone who doesn't know my case and doesn't know me. I'm so emotionally and energetically sensitive that I know it would be far more upsetting to me to get results that were not translated correctly for me from someone I don't know than to just wait until I can see Dr.Uppal on Thursday when I'm scheduled for chemo. not to mention that sometimes the PAs translate the information to sound completely different than Dr. Uppals take.
I was able to understand the results put into my record regarding the kidney ultrasound:
so she hung out for a long time there on my bladder and I started to get really nervous.
when she finished she said she had to go talk to the radiologist to make sure she got all the information that was needed. That's the same statement that said to me when I originally got diagnosed with cancer in 2013. So then Im crazy nervous. Basically for a good 20 minutes,
10 on my bladder and 10 waiting in the room with my friend Kate I convinced myself that I must have bladder cancer and I started bawling my eyes out.
mostly thinking about my baby girl.
The tech bless her gentle heart saw my distress and told me that she didn't see anything that looked off with the ultrasound. she is an angel forever to me.
she also told me that I have a kidney stone in my left ureter very close to the connection with my bladder.
so I went home and studied up a bit about kidney stones.
pain as intense as childbirth is what people seemed really jazzed about saying.
I don't remember if I told you this but the pain I had back in August of last year that ended up getting me diagnosed with reoccurring cancer went like this:
I couldn't speak.
I couldn't move.
my dear friend Kirry who was performing a concert in Taos had to leave that concert at break and drive me back to her house I was in so much pain. There was no way I could even get to the hospital. Excruciating pain in my left groin I was writhing. once I got re-diagnosed it took me a while to remember that incident actually but I thought it was the cancer paining me.
now I'm convinced it was a kidney stone passing from my kidney through my left ureter.
yet another CT scan has been ordered for me because of this kidney stone.
why don't they just chop me up into little pieces and put me on a slide?
now I have all these questions that I'm waiting to get answered.
could the kidney stone at the end of my ureter be what actually caused my kidney dysfunction as opposed to the tumor? Has the pain been the kidney stone this whole time? Apparently stones are supposed to pass within a few days but if if what I'm feeling is correct I've had this kidney stone
since august of last year! for now im going to refuse the CT. flippant.
tomorrow is chemo # 7
tomorrow i talk to dr. uppal and hopefully there is clarity up in there.
c.
it's been difficult to write.
I feel like someone is watching me.
it's the watching that causes me to fold inside myself.
hide my real beauty.
this will now here be an old fashioned solid update.
so peewee came out.
some days later I noticed some lower back pain.
some back pain that reminded me a lot of sciatica.
actually it felt like a lesser intensity of the pain I had had that got me re-diagnosed.
but I knew that pain.
i've also continued to have pain in my groin around the area where the tumor is located.
I contacted Dr. Uppal and gave him all this information.
he replied by ordering a PET scan a complete CBC and a urine test.
oh and an ultrasound of my kidneys!
yeah I wass shitting a brick too.
so today being Tuesday all that is done.
I was supposed to get the PET results the day after
yet I'm still waiting.
oh and they did enter them into my records so I CAN read the results online
even though I CANT UNDERSTAND THEM!
I can understand just enough to freak the fuck out of myself. excuse me.
part of the reasons I'm waiting is because I realized I don't want to get the results of these critically important tests from someone who doesn't know my case and doesn't know me. I'm so emotionally and energetically sensitive that I know it would be far more upsetting to me to get results that were not translated correctly for me from someone I don't know than to just wait until I can see Dr.Uppal on Thursday when I'm scheduled for chemo. not to mention that sometimes the PAs translate the information to sound completely different than Dr. Uppals take.
I was able to understand the results put into my record regarding the kidney ultrasound:
so she hung out for a long time there on my bladder and I started to get really nervous.
when she finished she said she had to go talk to the radiologist to make sure she got all the information that was needed. That's the same statement that said to me when I originally got diagnosed with cancer in 2013. So then Im crazy nervous. Basically for a good 20 minutes,
10 on my bladder and 10 waiting in the room with my friend Kate I convinced myself that I must have bladder cancer and I started bawling my eyes out.
mostly thinking about my baby girl.
The tech bless her gentle heart saw my distress and told me that she didn't see anything that looked off with the ultrasound. she is an angel forever to me.
she also told me that I have a kidney stone in my left ureter very close to the connection with my bladder.
so I went home and studied up a bit about kidney stones.
pain as intense as childbirth is what people seemed really jazzed about saying.
I don't remember if I told you this but the pain I had back in August of last year that ended up getting me diagnosed with reoccurring cancer went like this:
I couldn't speak.
I couldn't move.
my dear friend Kirry who was performing a concert in Taos had to leave that concert at break and drive me back to her house I was in so much pain. There was no way I could even get to the hospital. Excruciating pain in my left groin I was writhing. once I got re-diagnosed it took me a while to remember that incident actually but I thought it was the cancer paining me.
now I'm convinced it was a kidney stone passing from my kidney through my left ureter.
yet another CT scan has been ordered for me because of this kidney stone.
why don't they just chop me up into little pieces and put me on a slide?
now I have all these questions that I'm waiting to get answered.
could the kidney stone at the end of my ureter be what actually caused my kidney dysfunction as opposed to the tumor? Has the pain been the kidney stone this whole time? Apparently stones are supposed to pass within a few days but if if what I'm feeling is correct I've had this kidney stone
since august of last year! for now im going to refuse the CT. flippant.
tomorrow is chemo # 7
tomorrow i talk to dr. uppal and hopefully there is clarity up in there.
c.
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