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Sometimes the craziness is certifyable

I want to document this, so I have it for well bluntly for explanation on all the papers at my desk – the four page package on the new “protocol” we are doing – and also to let me poof it into words and let it go.

Yeah this is a very strong technique for me, that once I write something out I forget it completely.

I’ve often said that the reason for alot of people dying to cancer is the fact that they give up and give in – They decide that dealing with the frustrations are more than they are willing to bear. It has often struck me like my time at the fitness camp where they kept pushing and pushing and you learned that what you “thought” was your limit was clearly far away from your limit because not only did you not die, or pass out — you really didn’t get much more than super tired and a little – yes really only a little sore after 8+ hours of fitness. I am capable of enduring alot more.

The new protocol is three medicines – we are going to shorten for the sake of ease of speech the H one – that I have taken for 5 ish years, that is a part of wholely a part of the protocols from the past – It will be the infusion part and the only part that my doc office is able to get/give me.

The other two parts of this protocol are the C/K part and the TT part – both of which I need to get from a specialty pharmacy. I thought that meant “I could get these from the same place, just a specialized place” Like medical mamajuana I have very few choices – apparently when it comes to chemo drugs – one of the tools you fight the second likely killer of humans you only get specialized places. Okay I understand.

Apparently there are “specialty pharmacies” that my insurance approves – they can pick and chose. Apparently not all of them can source the C/K or the TT – so it would seem after days of struggling to get approved thru one or another – having talked to the handful available at this point – there isn’t one that is “allowed” …. I wonder who it is giving permission for my drugs? — there isn’t one “allowed” to supply them.

My mind goes back to snow apocalypses to the not being able to get my anti seizure meds – to there being supply shortages – to the fact that all of these specialty pharmacies are NOT in Texas – to the mail issues and the delivery concerns …. so so many things …. to P deciding about potential transitions…. so so many things.

After spending more than 8 hours – closer to 10 of my time on my phone talking to super nice, very unable to assist me, people at many of these different companies – I still do not have medication on the way or in hand for a treatment my docter had wanted/planned to start on Thursday.

There is a larger portion of me that knows that stress is extremely counter to healing. Time and planning and the unknown in this is extremely stressful? Its like playing my own game of iron chef. “will she make the deadline” …. who sets the deadline? what is the purpose of the deadline? “are my thoughts helpful, how do they behave?

Most challengingly is the fact that I don’t feel any closer to a resolution on this then I was at the beginning when my oncologist said to me “we aren’t doing chemo today” ….. well news flash we might not be doing chemo every again! …. Because as the song goes “I have the power” and Healing > Stress over meds. …… Leaving aside the huge huge swing of super ridiculously annoyingness of having to “take multiple chemo pills twice a day, as well as get injections” and the likely really super uncomfortable side effects of said meds …. “like super likely to get diarrhea! YEAH SIGN ME UP!” or “hair likely to thin even more” “WOOT! an opportunity to shiny my inner bald again”….. and the side effects less likely hat could mean untimely demise — but hey its supposed to extend my life right? …. Maybe.

Frustrations how you vex me into shaking my head and understanding – finally – why someone would call uncle about these things — I mean lets just say that the cancer overall hasn’t caused me as much pain, suffering, annoyance as the multitude of “things to make it less, things to help me live longer, things to fix things” … have done for me.

Overall, and in great abundance – Life is good – just all the tribulations are making me shake my head and wonder.

I would like to see this…

Had an interesting thought roaming around in my brain this morning of a “role reversal” of James bond – what I mean by this is a reverse of every character cast in that series.

I could see Lucy Lui being an incredible Jamie Bond – and Johnny Depp being a great Agent M – and I can see such a rich diversity intermingled with the recast.

I feel like while there are blant sexual innuendos and down right half the plot is about sexual exploits – I feel it would be interesting to watch.

Could just be a mental rabbit hole – I go thru alot of these, but that is a powerful character – has been both the good and the bad of the instrument of learning how to say something without saying something – and it just didn’t occur to me how I missed the obvious that I was letting my “hero” be a man vs a woman.

This realization somewhat occurred to me from the perspective that I don’t have many female role models in my head – the characters that I feel are the “strong guiding source material” for many of my thoughts are men. Apparently my mind state is far more critical of women then men – I find faults more easily with women then I do with men – while I don’t quite understand the why of this – it is a very interesting/profound thing for me to recognize.

Its a time for me filled with different untraveled paths. I’m finding alot of those all around me and the exploration of the ones I’m endeavoring to peek at is incredible.

Life is an adventure always. When we chose a path that is so different it sort of makes the view of everything equally so different. Somehow the internalization of the concept that different isn’t bad or good has finally sunk in more and I’m chosing often to find what could easily be bad as good.

The adage that what doesn’t kill us makes us strong is stucking in my head alot lately – I’m also finding ways to magic myself into amazing circumstances – Its like my own personal tilt-a-whirl of life.

Overall Life is good.

Sometimes its not in the clouds

My head is doing a caucus race – something it does on the regular and I’m beginning to learn how to better catch, redirect, clear this. Still quite a challenge.

Went yesterday to get the next chemo, really really didn’t want to get it – when the doc asked “how are you doing today? ” I laughed – as I normally do when people ask this question – let them think whatever they want for my reply – its the most honest way to reply to that question. It is saying so much and nothing at the same time – no violation of my internal ethic system maintaining the pure honesty I feel is an absolute – but at the same time not taking on the burden associated with telling them verbal answer to their actual question – which is normally not what they were after when they asked. I answered in words “welp I don’t want to take this chemo today”

She, in her infinite wisdom – the reason she is on my team — small spiderweb here – when I spoke my response my little kid inside immediately got her little kid out and she replied “we aren’t doing chemo today” …. but I digress, she wants to start me on a new “protocol” — the pc way of saying — we have some other drug that we think will do other things that might be better for your circumstances “Protocol” —

Should be mentioned, when you go to the doctor they basically take a outline of where and what you are – with where and what your cancer stuff is — and then they match that up to the “flow chart of medicine that they have established thru university trial and error and thru predictive insurance approval.” — So you start with A, and move thru the alphabet depending upon how dangerous it is, and how drastic it is and how effective it is……. So lets go back to me –

When I started the protocol I specifically requested, I jumped ahead a bunch of “letters” — mostly because a friend recommended the lecture about this med, and I was actually inspired by the research symposium because the professor of the students presenting their research/findings – was joyous with the response. The FDA fast tracked this drug, and I requested it – as did my oncologist at the time, and I started it. Effectively I skipped ahead from protocol C down to Protocol H —- That isn’t to say that protocol D, E, F, G would have been any less effective for me – but this H seemed like what I wanted, and my oncologist agreed. So now we will be going back …. well a new medicine was released shortly after my H protocol and they actually put it earlier in the listing. Its now the new “G” – so we are stepping back to go forward.

This is an interesting thing in my life – and the most positive confirmation about this new protocol there is — for the best possible results life moves forward and backward – often for me the more challenging the problem the more I have to step back and clean up the room before we continue to go forward to place the new things.

So this protocol will suck — alot and have alot of very not fun aspects — however, I looked at some of the stats and some of the possibilities and it is somewhat remarkable. As I have indicated many times, chemo doesn’t kill cancer, the body does that job — this drug however, gets in to the cells, does the similar thing to the past protocol of “preventing replication” and also makes the cancer cells dazed and confused – and the outcome is they often self destruct. This should be helpful to my body in eliminating these self invaders, but will be alot more taxing on my system in terms of elimination of the bad and the chemicals.

There are alot of pictures on the web of “how this medicine impacts the cells” …. and there are a slightly higher risk associated with this medicine then the previous – but I still think its fairly low — bad if you won the lottery of symptoms —– but I think I already won the lottery because I’m here to type this 🙂

We will “fast track this new protocol” and the hope is that we get to start it next week – little kid is still a little upset about more icky …. but we all grow up and learn how to embrace that child and navigate thru the climate we are privileged to exist in…

Overall, and with great abundance – Life is Good.

Skate or Die

Was a quote from a game that R spent hours at the arcade playing – and I loved loved watching – 720 – which just seemed appropriate since today is that day.

Funny how things like that make your mind giggle. Like the fact that someone shared an amusing thing with me about how Convenient a day 711 was…. Small things, always the small things.

Today is wrought with appts with doctors. Both of whom are ones I deeply respect and actually enjoy the appts usually, but there is still an uneasy sense of apprehension that settles around my head every time before a dr appt. …. I mean bluntly, if you are “going to the doctor” its not so he can tell you how “great you are” — its for the other side, there is something you need expertise beyond your own self on your own body and the conditions occurring – so normally not going to be a thing to look forward to…. in a sense.

I’m working right now to help my mind reframe this – that its the equivalent of going to the library when you are doing research – clearly you have exhausted the resources within your immediate grasp so the doctor is the overly helpful librarian to give you direction where to seek or hunt next. — Yeah thats the ticket Alethia – there we go with a frame I can use.

So many great things happening right now, I get to share on the fringe and within my circle, such a powerful time to be alive. “with power comes responsibility” — or “infinite cosmic power, itty bitty living space”

Both quotes seem wildly appropriate and still very limiting. Watched a video about upcoming walk outs planned to help “produce change” – there is a great part of me – and apparently many others that feels like our class “diversity” has been shifting to the “haves” and the “have nots” — and as one of those units in the middle – its quite scary. This has occurred times in the past, in Americas past; and the results were while dynamic – it seems like we should have the capacity to learn from our history, learn from our challenges and advance or get thru this in a better less apocalyptical way – but it also seems like that is unlikely to occur.

I’m torn with staying “aware” of what’s going on in the macro cosmos … and sticking my head in the sand for the moment to focus on the apocalyptic things going on within the macro cosmos of me. The internal struggle I’m having right now with things is very parallel to the one going on to society and life – I’m humbled by alot of the contrasts.

Of course all these retrospectives don’t really serve me towards accomplishing the “one goal” or the “other” and two many pots means one of mine is probably going to get overcooked.

Speaking of cooked! I made the most wonderful Suppa Tuscana the other day! Pretty excited how it turned out – going to have to make it again for T when she gets back from holiday – I think this is what she was expecting/hoping for when I made the last “potato” soup…. and it wasn’t….. but this one — I have mastered you now, because you turned out exactly as I expected, soup – its on!

Overall, and in great abundance – Life is good.

One fruit, two fruits

Smoothies of banana mango apples freshly juiced are so so good. We started a few weeks ago making these mostly because I had apples that needed to get used, and we had a surplus of Bananas – as they have been a thing we added to costco – now with our ability to vacuum seal we are ordering bananas and avacodos there which when the ripen we freeze what we have left.

The mango gives such a unique flavor – its a fruit I have never really had extensive experience with but P in his infinite wisdom searched and found “the way” for how you easily separate it from the skin/seed to get the most of the tasty delicious goodness. Its a fruit, much like apple super rich in nutrients.

As re-scan week comes to a close I’m struck by how much I’ve come to recognize these as very much like the little notes my bug guys leave outside my door. They are neither solution nor bane they just happen. Hopefully doctors will have fun stories to tell me next week.

Apparently congress in their infinite wisdom passed some law that obligates medical establishments to pass on results of these and other tests within 24 hours. I mean I’m not at all complaining because “getting” and “knowing” whats what sooner is … well its appreciated. I do not have a medical degree however and its not something I’d have interest in obtaining and the results never just say “good” “bad” they use a butt load of jargon that I have to search for and hope that I’m finding some “smart” not some “silly” result ….. After all, the bane of the anonymity of the web is that all the information is not as factual and correct as it may have started out in the past when it was university based. Now its littered with the same marketing propaganda that the rest of life finds itself riddled with – we have Termites of the web folks, too bad the best pesticide for this is to get the pirates to be bug guys of the web.

Sufficed to say another 3 month of status obtained and now its time to zen into the next little bit and enjoy the beauty of life. Takes a little longer to clear the contrast from my body than it did five years ago, but it will clear and I’ll feel better and less tired than I do today.

Chemo is next week, and we are “moving on up” as they would sing at the beginning of the Jefferson’s. — I wonder if that show was prejudiced. So many spider webs, so little time.

On to fun things!

Life is good.

Straightening loops

There are certain aspects of oneself that the more you learn about the easier it is to find the source, and to evolve.

I’m a data analyst – before it was cool to be a data analyst – more as a personality type or “what I do when you tell me something” – I’m certain alot of personality types do this – but I’ve got it down to a science …. I’m effectively a black belt in data analysis – meaning to say there are many many times when I get it “wrong” because my mind takes this or that rabbit hole then I take a significant amount of time and energy to convince myself we are off course and retrace my mental steps – but overall the entire process is my “skill”

Most people I’ve met have this skill in one for or another, they take given piece of data and they “process it” – what that process looks like I’ve done extensive evaluation on — (Hint data analysis on people) and while it seems like it could or would be the same – its not at all the same.

What one person hears, the specific words, tone, inflection, pauses – are NOT the same as another. Every filter: Visual, Auditory, Smell and other sensory has significant amount of influence, as well as state of mind. Perception of the information is excessively important in the data anaylsis that most people do….. which part of me finds extremely amusing; its like the Theatre of data.

With the theatrical exposure and data I’ve gathered in my life its all about controlling the perception or how people take in what you give them to carry them to a specific conclusion. “manipulation” of a form

That being said, I take the data back to its raw form – clean off the perceptions, and the sensory — not discounting them because gut reaction on things is another point of data – as well as “other peoples take on things” is another point of data – but I digress.

I think this must be alot like what an English teacher does with an essay from an exceptional verbose student. They break it down to the frame work the “outline” of what was intended – if they can do this; then the essay has the structure it needs – and if not, then well it maybe a brilliant piece of fiction but it is neither clear nor concise.

I like Data. It is a form of storytelling. It conveys its truth both in form and function – not always applicable for me, but always of some substance. The ride is worth the ticket.

There are skills I’ve found – some I have, some I’ve observed, and many I am still desiring to master – that are excessively helpful for this data analysis – one I’m struggling with is allowing for the ride when I’ve already bought the ticket.

Like get on the train, sit there enjoy the sounds of the engine heating up – enjoy the heat from the outside as you sit stagnantly at the station – enjoy the vibrations and the whispers of the other passengers are you start to move – then the transition into the wind blowing thru the windows and the hustle and bustle in the cabin as the steward comes thru to help people get situated and for ticket checking.

All these things I find often boring and so I’ve mastered skills to hustle them along and hustle the herd into the stables – but I bought the ticket, and they are part of the ride. Clearly, I thought this experience would be a once in a life time pleasure so it makes sense to enjoy the moments before the roller coast dips thru the loops – those quick pauses at the beginning when the car is getting loaded and situated, the safety instructions over the PA – I should be relishing these things. Learning to enjoy them – is what I’m working with now.

The data analyst in my brain – she rarely shuts up – often times I find her doing the most ridiculous mental loops or calisthenics – you know in gym class where they made you do 50 push ups or 50 pull ups or some other ridiculous number of laps to get to the “goal” — well my head seemed to think that was a requirement so I learned to take a thought and process it upside down, around and thru quickly with many many repetitions, and that is what my brain still does – even in these days when I need to “slow down, life is to be savored” – so even in its modified state, I’m working to teach it to let the things go — not to lose the data analysis but maybe so much review isn’t necessary as I’m limiting what I’m exposing it to – and to whom.

Words have power

Being a gamer, I remember playing Everquest. I remember spending long times playing that game – and forming longtime friendships there. I remember when they heard about this new game coming out Worlds of Warcarft (wow) and how they were all excited. One of my friends was “in the know” with the game development community and got us all alpha invites to help with testing.

I remember playing “wow” before it was released, and “testing” particular things. Learning the game from both the Horde side (commonly thought of as the bad guys but not really) and the Alliance (commonly thought of as the good guys but not really) and trying different classes.

I remember that even though we worked so hard to level up a character in this new exciting game, they would be reset and were when release happened. We started over.

My particular group of friends formed a “guild” (group of friends that all gather together for a common purpose, makes item/currency exchange easier, and significantly makes chatting within the game easier) They named the guild “Apatheia” — which at the time I recall feeling was the same as apathy and felt it was an odd name but what ever type of thing.

Paths diverged as they so often do and I lost touch with those folks.

Today in posting, I had cause to look up both Apathy and Apatheia on the great source of wisdom for this age “google” ….

Apathy:

ap·a·thy/ˈapəTHē/Learn to pronouncenoun

  1. lack of interest, enthusiasm, or concern.

Apatheia: Apatheia (Greek: ἀπάθεια; from a- “without” and pathos “suffering” or “passion”), in Stoicism, refers to a state of mind in which one is not disturbed by the passions. It is best translated by the word equanimity rather than indifference. The meaning of the word apatheia is quite different from that of the modern English apathy, which has a distinctly negative connotation. According to the Stoics, apatheia was the quality that characterized the sage.

In hindsight of life, this makes so much more sense why they named the guild this – and today, of all days I’m struck with a very uncharacteristic sense of apatheia.

It strikes a cord with me that its derivation is Greek – always find it amusing when a word harmonizes with the origin of my name.

This is test week – so far I’ve done my MRI & CT – and due to the mixed blessing/curse of the modern age and posting of results I have gotten results back from both. Mixed bag. I’ll wait for doctors to “translate and put spin” on these things.

It is just striking to me how going into this week I have just had an overwhelming sense of Apatheia.

Next week is chemo and there are so many fun things to be looking into and exploring thats pretty much all I need to say.

Life is good.

Nostalgia

I learned something this morning – its sorta hard to explain and its completely Alethia Insanity. Nine is more important than seven.

No need to further elaborate on this, the lesson came blatantly clear and I had an aha moment. Thank you.

Yesterday was an amazing orange sky – P made a mention so I’d take a breather and appreciate it. It was one of those skies that the universe sends to remind us that we are not the end all we think we are – there is more happening than we have awareness of, and clearly it happened before we arrived, and will continue to occur after we are gone.

It was an amazing holiday weekend – we did nothing. I think thats part of what makes it amazing – Rest is apparently a thing, nothing is apparently a thing – both can be just as tiring as “something” and “some thing”

Today seems to be a productive hopeful day – thank you again to my new knowledge. Faith in the fact that if I get lost, I can just dori and things will turn out fine.

There are some things in the flux of life of which I am apprehensive, this weekend we took some time to clear a few of the things out of my headspace – but its remarkable to me now quickly that space evaporates into being absorbed after its cleared. The thing about life is the ongoing journey of clear, acquire, learn, evolve – so breathtaking so beautiful so often trying and annoying but wonderful in those moments of revelation.

Hurrah coffee – I put in another order for the new place I’ve found to enjoy and am enjoying a cup of it now – I did find the Pumpkin Spice I had did turn out MUCH better with age – the flavors subtled and this has made all the difference.

Had a weird retrospective the other day about the closet doors I painted so so long ago with multiple colors – Four to be exact – and a wonder about someone else covering that up not realizing the amount of joy derived from the pleasure of seeing the fruits of labor evolve daily – Its not unsimilar to the yellow roses we stenciled and painted on the window wall in my home when we first arrived – its a frequent reminder of the joy available to be had – the feeling of the moment for what I’d need down the line – and its so so true. But its much the same – because now its time for a new spark….. Just haven’t yet demised where that will be….. Several things have … crossed my erratic mind of late, and waiting to see which one sticks on the wall – aha spaghetti.

Overall and in grand abundance – Life is good.

Learning to let go

Is often a more than just a little scary….. Had an incident where we went to the “infectious disease doc” the one intuition has told me repeatedly was a good apple….. Her name and my general impression confirms this but I digress.

So we get to the place, and P is like “we have been here before”…. and I’m racking my brain mush to try and connect with how this is possible – the building isn’t very old and I can’t think of any reason other than the reason for the appt we are heading to that would drive us to this place.

This is one of those things that is bugging me, losing things – losing memories – I’ve had to allow myself to let them go, live is more valuable than the past and if I wish to see how I developed from past experiences, I really haven’t much further than my perceptions to explore.

So I’m trying to pull this memory, struggling and thinking and struggling and thinking – and I’m feeling alot like Pooh Bear with his “think think, think think” — and I walk inside the place and BOOM there it is….

The lobby is set up alot like our old HMO in CA, Kaiser – which I loved – its a meat market – but due to current conditions its very sparse, and I can read and negotiate better.

The memory comes pouring back to me – somewhat unrequested, although fully requested because its one of those “oh yeah momma here you go”… type of things – and I recall the experience from the year before not all the details but the waiting for over an hour after check in – being checked into the wrong place – first floor not second floor where the Doc I’m here to see is located, and them telling me “its too late to see me now as they have given my appt away, and would I like to reschedule” — and me being over the top angry in the moment. Why? Because I was practicing patience – P in his infinite wisdom went to his calendar – as mine had been scrubbed of this experience and provided further insight to elaborate that it was the day before my surgery – literally hours before my anticipation was that the issue in question would be resolved the next day so I didn’t need the appt after all….. Famous last words, or thoughts….

So I’m realizing all this as I’m walking to the place I know is the wrong check in – and I wait for them to tell me …. “Yep gotta check in upstairs” and I’m suddenly torn in 3 directions emotionally as I head for the elevator and check in on the second floor and wait in an identical waiting area to the one below on the first floor …

So many conflicting thoughts… and the only thing I can think is “better late then never” …. the Dr was as I expected brilliant and I feel like I have a direction for this obstacle.

The realization that I could so adamantly forget the entire negative experience, but have it flood back into my mind was “new” and well bluntly rather unpleasant. Good on me for letting it go, but interesting that it wasn’t really gone forever – the experience was still there just buried so deep as to be well it feels like the bad prize from lets make a deal – like where you just “know” they shouldn’t be trading the thing that isn’t super great but has some value for the thing behind door 2 because you just “know” its worse.

Gotta get a tad better at letting it go I think, also at reacting in the moment.

Overall, Life is good.

Another Genie in the lamp

**minor rant first about word press** wish they would stop changing settings because the inadvertently messed me up <again> today by deleting a draft I had in process because of their wonderful feature to “auto log you to WordPress rather than your own webpage – which somehow failed to log me in and failed enough to time me out for 20 minutes as well as eat the blog I had in process *** end rant.

On to today – what I can recall of it lol atleast – this brain being fluff is sometimes a little less fun than others.

The George Michael song “gotta have faith” sticks in my head today as I write this…. not that I’m all consumed by faith more that its strong in me – there is a pyramid of my thinking and this is somewhere near the top.

The old adage “hope springs eternal” is relevant. As we are all energy beings, from a cosmic source of energy that is neither ended nor created it exists – hope is like this, a well spring deep inside. Sometimes it needs to be cleaned or restored to remove that muck that accumulates, but its everlasting and a part of the cosmic universe that is one.

When you have hope in “something” or “someone” – the manifestation of this hope is based upon your belief. Belief is the strong sense or feeling that the Hope is not only possible but is likely to occur. The belief that the energy of the hope is strong and powerful and able to overcome small buildings in a single bound – no wait that’s superman – well its a sort of relevant saying – belief is like cosmic super power – when you add Faith into it it becomes powerful enough to move mountains and to shift reality into whatever the hope was behind the belief.

Faith gets a rap of being external – a “faith” in an all powerful sense or existence in the universe that controls the outcome of things. When in reality Faith is internal – a faith in the very essence of your core that your hopes and believes drive you further.

This is not a theoretical discussion/debate/exposition – there are a ton of those in this blog already and while I’m more than willing to stand on what I have external faiths about – there is neither “rightness” nor “wrongness” in the external faiths of others – there is only the power to clean or pollute the well of hope both the one that resides in me, and the one that resides in every other living being.

Hope is a powerful source, belief is one of its tools, and when you add Faith your cooking with gas and all things are possible.

Today is a good day.