Category Archives: Learning

Im a survivor

In November i heard about this new advancement – a new treatment passing out of stage two clinical trials. Friend showed me an article i also received an email notification about the youtube from the scientists doing the clinical trials. They were sharing their findings at a symposium in San Antonio. Reading about this new drug was inspiring. It was very promising and showing super promising results.

Fast forward to December and the drug was fast tracked and approved by the FDA – seems others also thought it was showing results that were over and above.

I gathered the information and carried it to take it into my oncologist. She entered the room so excited to share some information about the same drug!! She too had heard and read about it and wanted to gauge my interest. She felt confident she could get it for me but that i might have to travel to San Antonio (where the trials are in phase three) or Houston (MD Anderson) every three weeks for my treatments.

Fast forward to getting approved and the first treatment starting tomorrow. She was able to get the treatment at my normal office.

A few things about this is that its a new sort of chemo. Their trial cases are people in my condition, and they are just having very good results. I feel very hopeful for positive results and here is to being in the 65% with little to no sideeffects and just super effective long term results.

We went to kerbey lane today – and one of my favorite waitresses bought my breakfast! Its one of my favorite places for breakfast/lunch and this was an amazing treat. – just another example of bliss in this decade of gratitude.

I am strong. I am working to help my body stay strong and fight cancer and heal itself. Some days i get some hiccups, learn to get past those and endeavor to let them help me be stronger. I will beat this, just gotta keep learning until i master it.

Currently im working towards my next blissful trip the end of April- p is taking me to the little haystack in Oregon- pretty excited about this prospect- just have to get strong enough to enjoy the trip!

More again soon when i have outtakes from the new treatment.

Awe push it

Or rather dont. A few years back i went to fitness ridge – commonly called biggest loser camp. I learned some incredible lessons that how far we believe we are capable of going isn’t necessarily the same as how far we can go – and i learned how to push it. How to enjoy the satisfaction that comes with going beyond.

This wasn’t my first experience with this lesson but it was one i designed intentionally to be long enough to form brain patterns to guide me to the ability to push vs relax.

I started having what i have dubbed flashy things – picture in picture of flashes in my eyes. There are alot of “probables” for the root cause of this – and sufficed to say ive had them periodically rarely since the seizure/reaction i had in july.

Ive never really liked taking medicine im not sure anyone really does – so i have endeavored to be overly frugal with my medicines available to help with this. Sufficed to say i did not take enough to prevent a massive four hour seizure- assuming on the time since we are judging from my last memory of texting and when they were stopped. Apparently they pulled a significant amount of fluid out of my lungs – i apparently continue to live my semi charmed life and am so so grateful to be alive.

They started me on some anti seizure meds which cause delusions and paranoia as the side effects this was a really bad mix for my overactive personality. I had a few very bad days. Once i got into a regular room (out of ther icu) apparently i started a routine of “let me go home”- calling P and R at four am to pick me up.

Most of the crazy things i really don’t remember my body was fighting to be alive for the right to live and to keep enjoying life.

I got home. There are so so many needs after a visit like this a troupe of new doctors- figuring out my next steps. The new chemo is awaiting final approval from insurance so that’s very hopeful. It has really good results so far with a fairly low rate of incident.

I was doing really well getting around and recovering until i decided to be too quick getting the dog in the rain and tripped on my purse getting out of the car – its so funny to me because i had and was actually using the walker still, but i was rushing to get out and it was slick from the rain. My saving grace literally is the love and care of the people around me. I feel – i think it was well? As well as can be when you suddenly know your falling and there is no stopping hitting the hard wet concrete.

On the plus side, everything seems to be working as intended just vert bruised and sore- again. Life’s reminder to slow down.

They found blood clots in my arm from the hospital but im getting another medication to help with that – and im finally starting to feel a bit adjusted to the other meds – or i should say reality is once again a part of me.

I have been praying alot lately – i know there is more work i am responsible for doing so it isnt yet time to stop fighting. Its easier to pray for direction, love, guidance, hope and healing than it is to be focuses on what isn’t working as intended. Although i do feel a bit like the 45+year old i am these days.

Special blessings and thanks for all the light love and help from all the staff, friends, family and loved ones. Prayers and positive thoughts always help.

Best Laid Plans

So new surgery plan is Jan 30th. This is for a full laparoscopic Hysterectomy – will entail an overnight stay at the hospital.

Oncologist is working on trying to get me access to the new treatment option – which is a new drug that was just FDA approved for my condition Dec 20th – hurray for new drugs.

Will have next set of tests in Feb, here is to hoping for no huge changes.

Phil and I have a trip planned for just after my birthday, to head out to Oregon, will be an interesting time with lots of rest and relaxation.

I’ve decided, I’d like to take a trip out to SFO to “walk” actually walk over the golden gate bridge. I’ve been many times, and driven across it atleast 8 or so times, but the recent thought or idea that has kinda come to me is that the perspective difference is so huge from actually walking it, that I’d kinda like to “see” that place from my feet. Its a little bit of a walk for me right now, 1.7 Miles – but I should be able to get up to that not being a big deal by the time I’m going to do it, which will be sometime after April.

There are alot of good things going on now, my meditation room is finally starting to come together, its very usable, and quite pretty. The painting and carpet got done towards end of the year, and the furniture is coming together. R is putting together one of the “assembly required” pieces I got, which I had thought were “some assembly” but turns out are “full assembly” type pieces. Thank goodness for brothers capable of building things.

My biomat is set up on my massage table in there, and I used it yesterday. It was heaven. Which is a good thing, because a new symptom showed up over the past few days. A weird sharp pain in my right Rhomboid, that isn’t exactly muscular pain. I feel, from intuition that its somehow cancer related, or rather atleast an offshoot, it could be, or seems like maybe its one of the joyous benefits of long term steroid usage – I’ve come to realize that its been about 4 months of twice a week steroid shots at this point, and unfortunately doesn’t seem like this is going away anytime soon. Its possible that “something” has started to degenerate, to the point of rubbing against something else, that is causing kinda of muscular/nervous trickle down impact in this area. Its mostly inconvenient more than excessively painful. To quote Gin Blossoms first album “new miserable experiences” – they are just thankful little reminders that I’m alive and still winning my battle.

I have decided that not only is 2020 a year of gratitude, but basically this is a brand spanking new decade of gratitude. Going to usher it in and welcome it into my mind, heart, soul and house. Thank you for joining me on this new exciting journey of just being thankful for EVERYTHING.

There is no such thing as too thankful, and while its possible to upset or offend people by thanking them, I think that’s a pretty rare thing and possibility of thing to occur. Thanks is self energy generating, as well as healing energy generating, and I’ve decided I can’t surround myself with too much of this…. so I’ll just be spending all my time effort and energy in a plethora of thanks.

I have started my 2020 playlist – its still a work in progress – as they all are until close to the end of the year lol 🙂 but its coming along pretty nicely

Pretty excited about plans for the year, and progress for the year. I have things in progress, and hopes to work towards.

Here is to more time healing, more time sharing, and more time loving. So much thanks for blog posts that come easily.

2020 the Year of Gratitude

20/20 has always been a thought about being able to see things with clarity. Being able to see all the angle,s and the perspective that isn’t necessarily where you are currently positioned or framed from.

This year, is about being thankful. I am so so thankful I’m here, alive and able to write out my thanks. It will be four years soon that I’ve been blessed with cancer. This year, is about seeing it for the blessing that it is, for all the time I have had, unexpectedly, the gift.

I’m grateful to god, the universe, and all my lived ones for being with me on this journey. I have overwhelming gratitude for all of the lessons and information I have learned, the amazing people I have met, and the experiences I have had that have helped me grow, become stronger, and shown me how to focus on the most important things.

The best things, the most cherished, have always been the things that I had to endure and struggle to achieve. I think that’s part of my hard headedness, but I am blessed both for my hard headedness and for the mountains I have climbed.

I love my life. I love life. There are so many amazing things in life, so many things to be blissful and enjoy.

I’m thankful for sunrises. For watching the sun crest over the trees in my backyard. For feeling the wind blow, and hearing it blow against my windchimes. For hearing the birds in the trees, nesting and enjoying life. Grateful for the sun, and the warm humbling feeling of it against my skin. Thankful for hats 🙂 – knitted by kind caring people to protect my head.

I’m thankful for smiles on strangers, and even more so on friends and loved ones. I’m so blessed for hugs, the long sort, and the short sort, the random ones for people as an expression of gratitude, and the ones for loved ones for imparting more feeling than words alone are capable of doing.

I’m am blessed, to have a life filled with so many joys, so many people that bless me with their expressions of thanks, and prayers, and well wishes. So many loved ones that check to see how I’m doing, and provide me with things to make me laugh, and smile and to just continue with my joy in life.

I’m am humbled by the magnificence and glory of my body. How it is able to endure, things that I don’t know what they have done and are continuing to do, but I am thankful and can feel when it lets me know, we are okay, we can endure, we can keep fighting.

I am so thankful for small wonders, like a self created “dirty chai”. Chai I’ve brewed myself, mixed in with a little coffee, a blessing all its own sort in my mouth, that opens up my senses, and reminds me of all the wonders that exist in life. All the passions I still have to explore and to share. All the magic and wonder that exists, and the miracles that are within my grasp.

I am hopeful for this year of gratitude, may I experience it in present moments, from moment to moment, and generate an entire year of 20/20 that is blessed with grace. May all the people I love, all the people in my life, all my support, all the random people I will encounter, that will cross along my path, may they have this same inspiration, and overwhelming gratitude for life, and have an amazing year of experiences.

A long December

Another day, another song that has such a meaning and profoundness to my head and thoughts. Counting Crows has been a long time favorite of mine for a very long time. This song, ended up on my “ho ho ho” play list – the play list I’m making for our family outing tomorrow. I’ve been working on this playlist for a bit.

The thought came up in conversations the other day, where in another life I would have been a DJ. Music has always been my art form. I’ve had alot of conversations this year, about Artists and Facilitators. Its kinda one of my running theory/beliefs that there are parts of the mind that are either, Artists, Not Artists (maybe we could/should call those Statistic people?) and Facilitators. That is to say, in more depth, there are people who focus their lives on passions, that are for the purpose of bringing them joy. There are may types of art forms, acting, singing, scientists, politicians, gamers… I could keep going. Artists, are people that when in the midst of their particular flavor of passion, time has no meaning. I mean truthfully, time really has no meaning anyway, so being in that passion that art is the truth – time is the lie. These people are of all walks of life, and all types and qualities, but the single thing they share, is when they talk about the thing they are passionate about, because it so integral for them to life – they are inspiring. Knowing nothing about what they are passionate about doesn’t really matter, if they are a kind artist, they are able to take you on the adventure they experience when they are in their art, when they are working, and you want to be there with them, you want to do whatever you can to help them do it. It makes you feel alive. These people are “artists” – I truly feel most people have the ability to be artists, but its not something that all of us gravitate to naturally.

There are “not artists” – this is not to say they people are any lessor. They are good people, they are practical people, living happy lives, finding things to make them happy. Purchasing the art of the artists, speaking about life. They can enjoy art, from a distance, but the things that bring them joy are not related to the work. They can lose track of time in other ways. These people are even more varied than the artists. And having spent alot of my life as one of these people. The practical people. The people that form a routine, and enjoy the pleasure of the expected, the predictable. They plan, they pick, they chose, they want structure. They find Joy in so many more varied ways than artists, its kinda hard to explain this, although I will say one thing that brings them joy – atleast in my experience Most of the “not artists” is the completion element. That is not to say that Artists do not get joy out of completion, but they get melancholy more from it, in a way that Not artists tend not to get. Not artists, enjoy the completion, because it brings the excitement and the vexation of the starting something new. The frustrastration and struggle that comes with something new that is a new challenge, with the confidence, and predictability that comes with knowing that it too will complete, and there will never be an end to the things that will need to be accomplished.

There are Facilitators – these are people with the Artist and Not artist traits more in balance in their lives. They are driven to not artist tasks necessarily, but they do enjoy them. They do however enjoy the artistic tasks equally or even sometimes more. They however, have a passion driven from inspiring, and being inspired, by both Artists and Non-Artists. They are the ones that can see both sides, and they walk the ground in middle. They can see the passions in artistic works, the ability to transcend time to change things, to bring about something that hasn’t ever existed in some form that is new and helpful, maybe not to themselves, but to the world. They can see the steadfast competence of the non-artists, the predictability, the loyalty, the mountains of accomplishments, and achievements, they can see the goal oriented driven to a predictable result that is helpful and dependable, the task oriented accomplishment. They see both, and they want to help both improve, they stop and listen, and watch, they share a word of positive thought or encouragement, helping see an external perspective for both the Artist and the Non-Artist, they challenge thinking, and help keep both the Artist and Non-Artist from falling into an abyss of anything other than Joy. This is what brings Joy to the facilitator, they know that their passion is in helping other people achieve, and seeing the results are inspiring and hope minding and they have more work to do, always seeking out for that next person to help.

For much of my adult life, I have been a facilitator. I have spent the majority of my life trying to help other people reach their passion, of finding incredible joy in seeing their passion. It has inspired me to be surrounded, many times, by artists. It has inspired me to be surrounded by non-artists. I have been good at facilitating. I have learned and mastered many lessons. This has not necessarily been a natural thing for me. I feel that this was a compromise for me, a way of not fully embracing my artistic self, my artistic nature, of being afraid of what it would mean if I were an artist, what art would I be? Where would I be? What would I do? How would I support myself? All of these self doubts, are what drove me to stay comfortable in the happy place between Non-artist and Artist – to carve out a niche of competence that wasn’t giving up artistic ideas, and pursuits while not completely forcing me to embrace the non-artistic, which while I am competent at, does not bring me a joy. As I have gotten older, I have gotten more comfortable, been able to find joy in many of the non-artistic tasks, the completion of many tasks bringing me a satisfaction much like joy. Each time however, it has left me with mild feeling of frustration, feeling more like I have missed something.

In reflection of my life, I can see many times that the universe has presented me with a Door, a pathway to artistic pursuits, many many times, I can see that at each turn, I was scared and too afraid to step over and open that door. I can not say I have missed all of the doors, there are many I have opened and walked thru, and those few times in my life seem to have been incredible, and brief, as I have fallen back into old patterns that have led me back to that facilitation pathway again and again.

Its a different time in my life, and I am finding great joy in as many artistic things as I can put my heart into. And smiling at myself for the blessing I have each day, to do these things – that its not too late, for me to find my bliss in these things.

Tomorrow we are doing a family “lets go see the lights” trip. It should be a blast, we have a limo to drive us around, and allow us all to have just camaraderie together without someone having to focus on the road. We have dinner reservations, and we decided to do this event together, instead of presents, as the time and company is the best present we can give each other right now. We have tasty baked goods to indulge in – sufficed to say, it will probably NOT be a good eating night – but it will be a TASTY eating evening 🙂 – we have some ideas about where and when we will be about, but mostly it will just be a party together. Its a very odd holiday, and this is a very odd year, and I think this will be a fun adventure to share.

Wouldn’t be make believe if you believed in me….

So many thoughts, so many of them spider webbing in different directions, but so closely forming a knitting pattern.

“Pretty paper, pretty ribbon of blue… wrap your presents to your darlin a few… pretty pencil to say I love you”… Loved this song by Willie – its always been one of my favorites. Its actually pretty easy for me to say this is one of my favorite holiday songs.

Then there is the song of the title of this post, Paper Moon – by Nat King Cole – another favorite of mine.

Belief is such a powerful thing. A powerful tool.

Went to acupuncture today, its one of my top 5 things I do to work on curing my cancer. Its a self care treatment that works on all of my symptoms, and helps me physically feel better. The particular place I go, and the therapist who does my treatments makes me mentally and emotionally feel better too, which makes it an extremely valuable tool in my arsenal.

I say we, because I haven’t been driving in the past year. Having agreed early in the year to relinquish this, due to where the cancer is currently taking up squatting rights in my brain. As an uninvited guest, its there, and I’m dealing with the mechanisms for evicting it, slowly. Giving up my freedom for driving is one of the things I have had to embrace gracefully. This has meant that every appointment I have to get to for labs, or doctors, or self care requires someone, one of my family, one of my support group to assist me in getting there.

I am blessed in some many respects, because the people in my support group have had the ability to do this with very little issues, and have been truly gracious in their assistance. This might not have been the case for many other people, but it is the case for me. Its one thing to love someone, its another thing to have to make adjustments to your work schedule every week, and shuttle them around from appointment to appointment. This is just a quick thank you to the universe for them being in my life and for the blessing of having been provided such a wonderful and gracious accomodation to help me with my needs.

We today, was me and my mum. She helps me when she can to get from point a to point b. When we go for the appointment, she is very kind and waits loyally and lovingly and never has negative things to say about the time or the wait or the drive – even when she gets stuck driving early or late, or in icky Austin Traffic.

Today after the treatment, we went to Kerbey Lane, for Brunch ish. We do this when we can, because Kerbey is one of my favorite places to be pampered and enjoy coffee and some seasonally tasty and healthy foods. Today we were talking and I was telling her stories of the experiences I had over the weekend.

This is a case where I’m going to relay something that was impactful, both for her, and for me… because there are as always with everything more than one side to ever story – perspective makes life such an interesting thing.

Anyone who knows me knows, that I am loud. I was classically voice trained, and I learned acting things as well as just generally showmanship things at a very young age, and they have stuck with me throughout my life. I also have a mouth like a sailor 🙂 – I learned cussing at a very young age, and while I learned there was a time and a place for it – my mothers company has always been one of those places where its always been comfortable and accepting of my use of profanity to accentuate a point.

I was telling my mother a story, and I cussed. I used an expression “They are so fucking annoying” – apparently my words were so loud, so as to interrupt or bother the person at the other table. This middle aged woman turned around and glared at me. We made eye contact, I nodded to her, as her look to “stop me in my tracks” did – it interrupted my trail of thought, and so I could nto recall where in my story I was, but I attempted to lower my voice, and I restarted my story, to my mother in a voice slightly lower – I thought it was lower, and started the story back with the cussing line, that had clearly been what caught this woman’s attention. I didn’t think anything over the interaction. In my life, it is not uncommon for people to pay attention when I speak, and not uncommon for people to lookylou into my conversation.

I continued my story, and my mom and I continued talking. We had ordered breakfast and generally I was feeling okay today, and we were talking about things for this weekend, and the holidays.

This woman, as she left her table, waited until her companion had left, and then she stopped at my table, and she made a point to direct her full force of attention at me and explain how I was effectively a horrible person. How she was out having a nice time with her son, who she never gets to see, and my loud lewd words had both offended her and she was sorry I was so rude to my breakfast guest. She further indicated she couldn’t believe I had continued talking when she had stared me down and had clearly made contact with her. I apologized to her, and expressed my sympathy for causing her to have a less than desirable time at her breakfast. I offered to pay for her meal. She indicated they had already paid, and she would NOT be taking my money as it wasn’t about money. I again apologized to her, and I asked her if there were any way I could correct the situation. She further went on to rail on me again from the beginning, repeating all of her accusations, and detailing how I was effectively the worst person in the world. I apologized again to her, looked her in the eye, and reached out to touch her arm with my apology. She snapped back and cringed back from me as if I were a viper, and again started her loud beratement of me for my rude behaviour. I again apologized, and asked her again if there were any way I could make reparations for ruining the enjoyment of her visit. She started again with her litany of insults about my rude behaviour, and again repeated her loud boisterous talking down to me. I sat silently, and allowed her to finish, and leave.

I sat a moment, and felt the weight of all of my energy sources bolster up to shield me and protect me from this army of toxicity. I felt my angels bolster and shelter me. I felt the weight of 10000 armies of light step in to wall and protect me, and the true humility that comes from being chastised for something to which you own, and the weight and the responsibility that goes with knowing what you have done, and being okay with the fact that you did it, but also allowing someone else to not be okay with it. The weight of this all hit me like a tidal wave as the emotional weight of the ocean cascaded over, around and thru me. I cried.

A waiter choice that moment to arrive with food at our table, having caught the lady tyraid he looked me humbled, and he apologized to me, he asked if I was okay, he asked if I needed anything. I told him it was okay, and it was perfectly okay.

I looked across the table at my mother, who was on the verge of crying. I told her it was okay. She nodded, and we talked about it. There have been many times in my life, that I would have been that woman. So profoundly offended by my right to have everything in life precisely as I felt it was deserving, that when someone else was just being themselves, I would have felt the obligation to scold them and tell them whats what about the fact that they ruined my time too. Probably, although I’m not usually one for feedback that is not actionable, but probably some or one of the time my feedback was also completely not actionable, and my “unintended intent” was just to drop a negative ball of hurtful emotion upon another human being too… I mean Misery does love company…. I hope her day improved. It was definitely a moment of life lesson for me.

So many thoughts about this – I talked to my psychologist about this, and I thought that maybe I needed to blog out a perspective for this lady, but I have since come to recognize, that not only do I not need this, it’s not really relevant. I took the lesson from the experience, and it’s done now. Blogging it in general has just allowed me to document my lessons so that hopefully I don’t need to repeat them.

Its been an interesting week all the way around, so many memories, so many thoughts and I get to have an exciting family time this weekend.

Christmas is not my favorite holiday, it would probably be number 4 of the annual ones, falling behind St. Patty’s day, Thanksgiving, Valentines day, my birthday – oh I guess that means it falls to 5. I think part of what I don’t care for about Christmas is the feeling of obligation around presents. I am all for presents, I love buying them, giving them and getting them. But I enjoy it so much more when its just random or when I see or find that thing that makes a person so joyful – or when they find a thing that is so joyful for me. I don’t enjoy the “well its that day” so we have to shop and have to settle and have to pay prices that are higher for the time of year – because its “expected” – so Please don’t take it personally if I don’t buy christmas presents anymore. If you aren’t a young child, too young to explain the concept of obligation vs fun – probably you won’t be getting anything from me…. Unless I randomly happen to see the perfect thing for you that strikes me as a thing I should get – and hopefully it won’t be around Dec 25th.

This is not to say I am a scrooge at all, I love the decorations, and the flashing lights – but I enjoy them for the spirit that they represent, not the presents.

I will say, I have always enjoyed christmas cards – the concept of sending and receiving them. Of hearing from friends I haven’t conversed with in a long time, or of family. The cute sayings and just the practice of writing them out and signing them. Something about mailing things has always seemed magic to me, and even more so this time of year. Somehow the mail carriers have always seemed like the best sort of Santa around, carrying a bag full of letters, with stamps and happy wishes to brighten up my day.

May your time with family always be memorable, may your moments of quiet be revitalizing, may your hopes for the rest of 2019 be heard, may your 2020 start with progress to your dreams for the year.

Taking over the world is a slow process

“Apollo you have to crawl before you can run” – said Alethia to the small baby trying to understand why his feet were not strong enough to just run now.

The quote of Pinky and the brain of “what are we going to do today brain?” “why take over the world of course” keeps going thru my head.

There was good news, interesting news, work to be done news, and news that might not seem good, but is actually not overly bad. Got test results. The MRI looks “not bad” – this is the good news – in case you might have been wondering. By not bad, I mean that while I still have the oh 20+ tumors in my brain, the ones that were treated, and roughly 10+ of the largest ones, do not look larger. They look reduced, and the cool word the radiation person used was “necrotic change” – personally, when referring to the cancer cells I’m trying to kill off, this seemed like a kinda cool way to say “hey I’m with you lady, you go keep killing those things off” The interesting news is that the two tumors that are not showing reduction were not spots that were radiated, and while they do show a small increase, even my radiologist who is by far the most detail oriented and realist of my entire support team, blew up the pictures, to specifically show the growth size, and then let me know he wasn’t overly concerned with these two spots enough at this time to try and radiate them now.

On to the Pet Scan results, and the work to be done, and other news. First its worth mentioning that the Pet scan was being compared to my last Pet Scan which was last year this time. Also marginally compared to my multiple CT & Bone scans this year. Pet Scans show more detail in some areas, while CT and Bone scan show more detail in others. Its not exactly a 1-1 ratio of what they show, and while they will often show “no progression” or “some progression” … its difficult to precisely indicate on any one scan what this means. Part of why I recommended/asked for us to do a PET scan, was to have comparative results, and to make sure we are keeping those, also because I had this nagging feeling since I had the super good CT/Bone scan in October, and still had these things that I feel were more of a concern than those scans indicated… that it was time to do “this type of scan” to see “other things” The scan showed progression year over year, and it showed active tumors in 7 lymph node spots in my chest. This was Not at all a surprise to me, these are palpable spots, that were not showing on the CT I had in October. So yeah, seems like from the pet scan they are cancer too? Joy – not a shock, but work to be ongoing to resolve this, more movement, more treatments – also worth noting that if the lymph nodes are getting cancer again, then the chemo is NOT stopping progression so it will likely be time to change treatments. There is no active cancer showing in my heart, lungs, liver. These are actually kinda good things, a new treatment and cancer free organs means I am still doing a good job of fighting the cancer, and still doing my best to keep alive and healthy.

There have been some concerns on my blood scans. Nothing specifically noteworthy other than Red Blood cell count being low enough, coupled with problematic experiential intuitive confirmations about it not being the right time to do the surgery, have postponed the surgery and put me on the scout for a new surgeon. This is not an especially hurried thing, as I’d like the counts to return to a more normal range before we do surgery, and I’d like to ensure that I have a surgeon I feel more confident will be available for communication and concerns during the process. Seven unreturned contacts is too many for me to consider this person a good fit for my team.

I’ve been working on redoing my guest/meditation – “my spare room to do things in” room – and it recently got painted and I finally picked out new carpet. I’m pretty excited it will be installed in a week so I’m much looking forward to my newly gained time from the cancellation of the surgery, for some rest and relaxation.

I’ve been feeling a bit stir crazy lately, with that travel itch gnawing at the parts of me that are somewhat emotional, a little spiritual, a tiny bit mental and while normally the physical would be all over this too… its kinda like “please let us just rest here at the house for a bit” — so I’ve kinda been telling the other parts to slow down and savour the good things for a bit. This has had some odd ramifications – mostly more emotional temper tantrums with myself, and more feeling the need to spiritually cleanse cleanse cleanse, because somehow my spirit, when I’m not traveling is perpetually calling things into me for every purpose – many are so so good, like “yes yes give me that healing energy” or “yes yes I’ll take those prayers and that love and that hope” … but some of the things like “donate to this political campaign” or “save the environment by supporting the ants in indonesia” – I’m not saying that there is anything wrong with the later two at all; just right now my dance card for helping other people and helping the world outside of me – while it is never quite full; having been dedicated to god as a baby somehow gives me this part of me that is always available to help others, its not quite full, but it is spending a good bit of time over allocated and a bit slower than its ever been in my life.

I am finding myself to be a more thought-full person. While I have often had my mind full of thoughts, the times now when I find myself spending more time thinking than acting is … odd. I have always considered myself to be a thoughtful person – meaning showing considerations of others – but now I’m finding myself absorbed in thoughts, which somehow is causing me to frequently have more discretion and discernment towards my formerly thoughtful actions. This is not at all to say I have stopped them lol – easier to stop breathing or to damn a raging river – more that they are more decided, decisive and show how with the slightly more slower speed, more deliberate and significantly more rewarding. Its weird to think that somehow in my past just act and action ways, I somehow missed out on a significant amount of joy and happiness by not pausing to add more of the element of thought and refinement to my actions and there by producing just a small amount more joy and happiness to the final result. I like being thoughtful, so maybe this is the thing that brings me one of my greatest joys. I’m not sure, but I do know this “thought-full” ness seems healthier for me.

This time of year, its so so much fun. I love being surrounded by all the joy and happiness that randomly appears at odd moments. The random acts of kindness I happen to bear witness to, or participate in, or just enjoy the tales of…. Holidays are so good for universal energy. They lighten the spirit and the soul somehow, with the overwhelming realization that we are all connected, even if we just see it as the brief holiday moment of time, it still lifts the shroud of imaginary disconnect long enough for true peace, comfort and joy.

I’m am blessed to be here to enjoy this time of year, blessed to be surrounded by amazing people, caring, considerate, and thoughtful, to share this season with, to share the joy of being alive with, and to look forward to amazing things in the coming year.

Life is good.

With a different cover for the shade.

Have been feeling the desire to blog, mostly about anything not related to my health. While I know blogging about my health is important and is valuable both from the documentation perspective and from general dissemination of information as well as receptacle of information history, its less fun to share information that I find somewhat abhorrent than to share information that is fun and joyous.

So I’ve been waiting for inspiration to strike me about a topic I felt happy to be speaking about or at least felt inspired to be speaking about – not all subjects are happy ones after all, even if you can put positive rose colored glasses on easily and see things from a perspective and frame that allows you to view them as positive. I digress. Engaging topic search….

In the course of discourse with a friend today, we happened upon a button topic of mine that is not actually related to my physical condition. Although, in saying this there seems to be some element of it that IS related, so maybe its a good side piece for how I’m doing with the ability to transcend and allow me to see the picture from a small spec left field element.

I live by choice, at this time, in America. Its a society that is run, controlled, dictated by business. I’m not entirely certain that it has always been the case, but it is 100% confirmable the case today, 2019. There are good elements to this, and there are toxic elements to this, pretty much like everything in life. Accepting this is just a par for the course and then realizing its impacts, and the things that add value, and take away value.

I could write several pages about this as a method for persuasion, but I’m really not feeling the desire nor the need. The fact that having a “job” is something that we consider to be a laudable thing, and lack of having a job is something we shun people for… the fact that working until you “get” to retire – when seemingly you get to “work” on the things you find important, instead of what someone else tells you is important. The fact that all the necessities of life, a home to live in, health care and self care for your body, require this job or a nefarious form of finance, as money is the “energy” of business. All of these things, just self propagate my point.

My thought, this morning was, I wonder where I would need to live that business didn’t drive the society. I wondered if there were a place on earth that this pre-business society still exists. Or a post one, although I honestly don’t feel that a successful revolution of business society has existed yet, as I have not felt its tendrils of back lash within my society of “that place isn’t right, we can’t go there”

I feel that maybe, if the place exists/existed, it would probably be in India/Asia – not just from the perspective that its the largest populous source, but also also one of the most devote spiritual sources devoted to the “pure” energy devoid of finance, that comes with source, soul, heart, balance. Maybe in Tibet, or Parts more rural of India or China… where people still live to live, vs live to work. I feel I had many examples of this in my visit to India, and even could think of some examples in my visit to both, where I can reference examples that might be points for this, however the tendrils of business society have definitely built and fostered seeds in all of the countries I visited, where the opulence and courting sales pitch of “look how great business can be” is definitely lauded.

I know, in our society here in America, there are many subservents, that are not content with this business controlling society, I also know that most of them still shop, buy and consumer, which are the pillars of business, and what keeps this self replicating business society model functioning.

Maybe the business society model isn’t all bad, but it is definitely flawed, because it fails to consider the individual as an individual, and works like the medical profession has become to label everything by category and standardization. This is clearly flawed, and has been proven so by many different areas of study with regard to “not everything that is like is really like” and “standardized practice produce sub quality results” — not to mention the potential harm that forcing someone to do things that their mind, body and spirit are not in alignment with is just bad for humanity, the planet, and life in general. But then, there is the rub, Business is not alive, its not even an entity with a specific form, its a construct, which means even though our entire society is based upon it, its really only an imaginary fabrication given form and stability by shared collaborative thoughts, actions, and repetition.

Enough about this rabbit hole of thought that really isn’t leading places, and just rambling onward to a heartbeat drum.

Speaking of heartbeats…. Medical update information. Had my chemo infusion last week, after discussing the latest test results with my doctor. My labs, which have always looked perfect, no longer look perfect. They were not concerning to my doctor, the nurse staff or to pretty much anyone but me. The levels that are now out of range, are not significantly out of range, but they are noticeable, and concerning to me. They are liver levels, and blood levels that impact my bodies ability to purge toxins, and to sustain healing skills. I have requested them to monitor them again – yesterday in fact, so that I can keep track of them and ensure they are not shifting more, its always possible that the little bit off was “a weird day thing” – blood does fluctuate. The other test results we went over were from my Echo cardio report. Due to my cancer being HER2 positive (triple positive in fact) the chemo drugs I take, have this side effect of causing permanent damage to the heart and liver. Hence my reason for OCD monitoring. The echo monitors many aspects of my heart, but there are 3 things particularly they are watching for to see if the drug has had an impact and needs to be terminated. It had been, a little out of regime for this test, and I’d had 3 prior treatments since my last screening. Again with these types of tests, there is the possibility of it having been an “off day” for my body. That does not feel like the case in this particular result however, and I have asked them re-screen before we do the next treatment after christmas (delayed to allow me to heal some from the surgery) – this is actually quite good, because it will allow for my body to be in a better/best possible place before the next test, so if it were an anomaly, it should be clear.

The particular aspect of concern, is the % of the blood my heart is or was during this test, capable of pumping. A healthy human heart pumps more than 50% of its blood a second. They measure this % by this test. In previous tests, my heart has pumped between 68% and 64% of my blood thru, filtering things out, and oxygenating every second. In this test, my heart was reduced to pumping 58% thru. The doctors get concerned if you drop below 50% or if you shift more than 10%. As my previous test was only 64, this one with a shift of 58 was only 8% shift, so not a concern for a doctor. Highly concerning for me. I was not at all surprised by this result, and learning about it more explained a few things. I have been experiencing random tightness in my heart. Its been more of a ‘wow wonder what that is’ thing than a something I remembered or considered a symptom. I have experienced heart tightness before – when doing a super high intensity workout – where you feel your heart constrict and you know you are pushing it. Its not exactly a painful feeling more just an uncomfortable tightness, that has never lingered more than a breath or two, before returning to its normally scheduled program. That is the same with lately feeling this – like I will be washing dishes, and a tightness will come on, and a breath or two later, all gone. No harm no foul. There is a valid, real point to be made for the fact that I am over 45 now, and that hearts change as you get older, and maybe this 58% is my “new normal.” The time now is for monitoring and staying vigilant, but this isn’t anything new lol, just the job I have right now for “staying alive”

I have been praying more. To say more is kinda amusing, I have pretty much for the majority of my life prayed daily. I am finding myself praying, at more routines and times in the day, giving light and heart to spirit. I have also started cleansing my chi two to three times a day. This has very interesting ramifications.

My body as a temple is something I’ve always known, but seeing it manifest is an interesting thing, feeling it center, and feeling the connection to the people around me that I chose, – yes choice the thing that business tries to elude you into forgetting you have – the people I chose to keep in my life … feeling them working thru their own mysteries, marvels and wonders. It is very awe inspiring, and it brings me great joy to be able to share and revel in their wins, and to help provide comfort and sometimes positive spin on their struggles/challenges.

An adage I am perpetually reminding myself, which has echoed and been tested time and time again in my life – is the thought that the best things, the most satisfying and joys in my life – have always come as products of great striff, great effort, and often times long times of challenge and discomfort or satisfaction. They were worked/fought/harvested for, and they were not without burden or struggle. I try and focus and remember this when I have something happen which threatens to take my mind out of the happy positive places, when the thing isn’t what I’m hoping or right. I also try and let spirit guide me to not stressing over it, the work will happen, I will do what needs to be done, and I will keep fighting to win this battle.

I had an MRI yesterday, it was actually one of the easiest, fastest and best I’ve had – and that’s quite a bit to say since I believe it was my 7th in the past 4 years. I have begun to be enlightened to the fact that most of my suffering and struggle is completely self generated. There is a profound joy in embracing these unpleasant things, and conquering them for myself in my mind. I am hopeful the MRI will have something good to share, I will see the results on Friday.

I have a PET scan scheduled for thursday, and while its not for the doctor I see on Friday, the beautiful part of my medical support team is that he will have access to the report, and will allow me the opportunity to see if nothing else, the highlights from the report.

This is a source of great joy to me. Every member of my medical support team is a human I cherish. They are good to me, they are helpful to me, and while their information is tempered and restricted by the confines of the medical laws, doctrines, and general regime, they are human and will listen, and embrace with me the best treatment courses for my healing. I have an incredible team, from the administration, nurses, and doctors I have hand selected, and screened over time – to the licensed care providers for acupuncture, massage, physical therapy, and psychological care. All of my team is rooting for me, and working to listen and help me find the best possible solutions to solving my heath issues.

Its an incredible feeling, that all the work of tending my garden, of fighting for my patient advocacy – while still perpetually ongoing. Its such an empowering feeling to know that I have these quality personal, individuals to help me along this journey. This is a universal thank you to each and everyone of them.

Its going to be a long busy week, with many things to tick off before surgery next tuesday, but I am feeling strong and capable, and recovering from the chemo last week. I got blessed with an unexpected day off today, to just play and care for myself – hence the blog, and now on to more things around the house 🙂

Gobble Gobble Toil and Trouble

Happy Holidays! I just love this time of year, truly the fall and winter and early spring just my favorite time of year. Something about fall makes everyone seem happier. People do more random acts of kindness, something about the holidays make people realize they are humans, we are all humans and being kind to your fellow humans feels good. I’ve never understood it, but the power of it is palpabile. It helps people feel better, stronger, and heal, or atleast me 🙂

I had planned a pre-thanksgiving day event. I love having parties, they are a labour of love, especially now when my energy is just often times so dynamically low, because parties are super high energy. Thanksgiving has always been a holiday I have enjoyed, turkey, cranberry sauce, pumpkin, family, friends, happy memories, and so so many things to be thankful for… whats not to love. I decided back in August that I wanted to plan a party for this year. This year has been a hard year for me, it isn’t the last hard year (at least not that I’m allowing yet) but it is a hard year, so many health things on a difficult path, I wanted a chance to get lots of hugs, and to celebrate life.

It was a fun exercise to plan this party. To pick out cute invitations, to plan for the count, and send them, and then to see who would be able to attend. I planned this for the weekend before the actual holiday, because I know the holiday is kinda difficult and tricky for alot of my family and friends – with inlaws and so many family, sometimes the actual holiday becomes an exercise in planning. I figured with it on a Saturday, it would be so much easier for people to negotiate, and while I knew that it being the weekend before it might work out better or worse for some. Just all the best of hopes.

In past years, I have really enjoyed cooking for this holiday. I love the pagendry of preparing a turkey and a feast. Its alot of work, but the labour always feels somehow satisfying in a way that many other things do not. This year however, I am recognizing my limitations, and physically being able to do this work was beyond my current capacity. I started looking at alternative options, because I didn’t want my invitees to need to do anything other than attend and enjoy. I was blessed by finding an incredible helpful site, that had amazing reviews (https://www.bestmobilechef.com/ ) I got connected with a really great lady, and it was both reasonable, and overall amazing. She helped develop a menu and get me a quote that was – well it was more than if I’d have bought all the individual components and cooked it myself, but it wasn’t double that cost, which really felt remarkable.

We have paid for the “get it from the grocery store” type of thanksgiving spread in the past, but since it requires you to do all the cooking, I’ve been very let down with that in the past, because it seemed like “oh here we are going to charge you a little more than if you just bought the stuff, and oh the only time savings you will have really is that you can be dumb and not know how to cook things, and we will give you step by step instructions.” Don’t get me wrong, it wasn’t horrible, but most of the stuff they gave us was heavily processed, with a ton of preservatives, and so it ended up tasting much less delicious than when I did it myself, so it was both more expensive, and no real time savings. Overall, not the way to go for “the best”.

This catering option, which was something I’d never really considered is a different type of situation. I am not going to say that I would absolutely repeat it – if I were able it would always be my preference to buy, prepare, cook it myself – its just more satisfying. I will say however, this option was serendipitously perfect. I had a chef show up at my house about an hour before our planned meal time, with all of the food, hot and ready to eat. The chef had made a menu I knew precisely what to expect, and accommodated my vegetarian and vegan guests, as well as the specific number of RSVP I had made. Overall 10/10 of experiences.

The party itself was magical. Just what I had hoped for when I was envisioning it in my mind. There were many of the people I had invited that were not able to attend. We had invited a few folks last minute that were not on my original invite list. We had a good blend of family and friends. We had a good blend of generational mix, we had happy people that showed up, we enjoyed each others company, we laughed, we gamed, we ate, and then they left and went home. Due to the catering, the clean up was pretty straight forward, and there were a few left overs but not too much, just the right amount.

I went to bed after the party feeling both exhausted and satisfied in a way that I haven’t felt in a long time. It was a happy pleasant feeling. Those types of feelings that you want to linger, but your also glad when you get to rest like a bear hibernating thru winter.

Happy Thanksgiving.

This week I am recovering, because I also used this day of my party as an official, planned, and hedonistic cheat day. I had so much horribly bad for me foods that day, that it will be a week or more to fully recover. I had round rock donuts, something I haven’t done in like two years. I had butter beer (thank you to my sister, and the universe for making both warm and hot) – which I also tried alcoholic – something I haven’t enjoyed in probably closer to 4 years… I had pie – so so glorious pie. I just love pumpkin. All of it made me feel pretty sick, but enjoying it and enjoying time with family and friends was worth every moment.

This week is about recovering. Getting my tummy back to its happy place, so it can keep healing cancer. Detoxing from all the carbs, and the sugar of the cheating day, and generally getting myself ready for the upcoming treatment tomorrow, and then surgery in 2 weeks. I have a plan, we are back to working the plan.

While I’m happy for the rest of the world for the holiday this week, for me, my thanksgiving was on Saturday. I am thankful for all the loves, and family in my life. I am happy for those that attended, and I am happy for those that were unable. I am happy that life is good for so many of the ones I love. I am happy that life is so good for me.

I am thankful for being able to celebrate life being good.

Odd things, that have given me pause.

I’m going to have surgery. Dec 10th to be exact. Going to have a full hysterectomy. Originally the discussion was about just doing an ovary removal, the surgeon has encouraged the full hysterectomy and after some review, consideration, general prayer, and practical intuition I was led to the general opinion that this is for the best.

There are several reasons.

First, after several years of avoiding/opting out of the genetic testing for cancer, I went ahead and pursued it, only to find I am in the 1%. Yes, you heard me right. I won the proverbial lottery sports fans. It was wildly believed years ago that cancer was a genetic disease, however it has recently been widely confirmed that it is generally a metabolic disease – meaning not so much genes as lifestyle controlling whether or not you get cancer.

The particular gene which I am in this rare minority of cancer sufferers to have, is also one of the more rare genetic mutations. Its one that causes a 14% increased risk of Ovarian Cancer (as well as 5% increased risk of breast cancer – but I am still of a quite consistently content mind that my particular cancer was caused from too many poor lifestyle choices catching up with me)

This is one of the reasons for the surgery. About the worst possible comically morbidly sad thing would be for me to be completely successful at eliminating all of the breast cancer in my body, only to have my body spontaneously develop ovarian cancer. No Ovaries, no ovarian cancer.

My particular breast cancer is triple positive. This means it has a plethora of food sources in my body, and the most prevalent and common is hormones, which I’m really not able to control. My body has done a bang up job my entire life of producing much and many more of these than I have ever needed, and my cancer has found them as a buffet of a food source. The particular chemos I am doing right now, struggle at blocking off the cancer, but with the fact that the cancer in the brain doesn’t seem to particularly be overly receptive to the chemo, or rather I’m just too healthy to allow the chemo to act on the brain, eliminating this food source is sort of a really good idea if your goal is to slow down and starve cancer.

Also practically speaking, I’m over 45. I have had radiation, and chemo for many years at this point. Prior to the first chemo they did warn me about the fact that if i were planning to have children, it was probably the best choice to fast track that at that moment. While it isn’t that I ever really decided to not have children, I feel alot more comfortable in the decision that its not something that is going to happen this lifetime for me. I have recently recognized and embraced the concept that while it wasn’t a conscious decision on my part, I am pretty consciously happy with the decision. Its not so much that I have any issues specifically with children more that I am acutely comfortable with never being personally responsible for their rearing or parenting.

The surgeon, in our discussions pointed out that the difference in the surgery for the ovary removal, or the full hysterectomy is a 7 minute difference of time. The surgery is a laparoscopic surgery, meaning they will open 5 small holes across my abdomen, inflate my stomach, and then use cameras to remove the parts, and perform the surgery. I will have 5 scars about the size of my port across my stomach.

The ovaries are supported by the fallopian tubes, and the uterus. While the ovaries have many functions in my body, the tubes & the uterus are somewhat sympathetic organs that work with the ovaries to assist in reproduction and growing babies. As these are not things I intend to do, it makes sense to remove them to prevent a dormant organ from producing possible negative things in my already compromised body.

The odd thing about all this logical things, about this entire thought, is that I’m weirdly happy about this surgery. I can’t imagine a time or a thing of being “happy” to have a surgery like this, but I am, somehow overly happy about the prospect that I’m doing this… It was suggested to me today by my psychologist that maybe its my feeling like I’m taking the attack on the the offensive, maybe I’m being proactive, and I feel that maybe this is accurate. I felt this same way, happy about doing keto… where I was starving the cancer of sugar. There is something cathartic about feeling like some part of your body is causing you more harm than good, and feeling like you have the power to slow it down, or break it or remove it.

So while I am apprehensive and casually optimistic about this surgery, overall I am weirdly happy to be having it upcoming. Now my focus is just still recovering from the radiation and chemo to make a fast recovery from the surgery.

I have been finding some things with balance more prevalent lately. I made a promise to my doctor that if/when a fall actually occurs, I’ll look at walker options or some type of cane to help me be steadier. Its rather a difficult thing to consider, particularly when I’ve just always been overly clumsy the entirety of my life.

Some of the other symptom things that are less, actively visible, but equally troubling are the difficulty in finding the right words more frequently. Again, this is something I’ve had the entirety of my life, however now it is often occuring where I don’t’ notice I spoke or typed the wrong word, and the word I was intending is no where near my mind. Pulling words has become significantly harder, and what I mean by this is that I have always had a very robust mental library system of cataloguing concepts and phrases, and when a word has been misplaced I have been able to locate it thru many filing cabinets of knowledge that were linked. My brain is not working the same anymore, and while the filing cabinets are still there, and I still have access to them, they are scatterbrained, it takes longer if I’m able to use them and often times the information is just not there. Luckily I recognize this is partially chemo, partially radiation, partially age, and partially cancer. Not just a one hit wonder type of thing, and there is also very precious little that it is worth doing anything other than “letting it go” and moving on to something else.

Living in the moment has somewhat become more of a mantra. I still have tons of personality tendencies that want to drive me towards planning or organizing or dewling in what will becoming, and what I have learned in the past, but somehow these brain things are helping me spend more time just being in the present.

Hopefully things will work out like I hope, and I’ll just keep on finding new things to fight the good fight for a much longer period of years. Because of the surgery, I’ve opted to go against my previous decision, and I’ll be getting new scans before the end of the year, this way I can see what happens in a few months from the surgery by having a good baseline from around/before its impact.