Saving the day

Finding so many things where my brain just isn’t the same – I think I finally have a keen appreciation for the adage “brain fart” – my brain is full of gas and just won’t stop unloading.

P and I have been enjoying more time leisurely driving around – and while he enjoys driving thru new areas, and exploring, I have been noticing more and more that I’m somewhat unaware of exactly where I am – or rather, a thing about knowing where I am that was rather a given for me with my data point brain, is now not only NOT a given, but its a wee bit of a struggle to go from “oh look at all the pretty things” for where I am to “oh this is xyz street, we are SE of ABC” – it feels somewhat like what I recall of preteen times, when I realized I’d kinda need to know how to navigate for when I would be driving, so I started paying attention. Now its more like – do I care about this? I’m safe with P and in a pinch I have tech to show me and navigate for me.

I think I’m starting to become comfortable with the idea that I can just enjoy the smelling of the flowers. Roses are nice.

Speaking of roses, a few months back, I had J trim back my rose bushes, they are alternated in my front garden with my rosemary – which the hedgehog seems to LOVE to burrow in (the rosemary bushes oddly). and the trim back did amazing things, those rose bushes are going gang busters now, they have all grown taller and are budding. It seems to early for buds, but I’m seriously enjoying them. They are almost up to head height so makes them nicer for enjoying.

My meditation room is painted, and carpeted, with new furniture, and will get its first guest next week when C comes to visit. Super excited about this – we have a plan for sushi Friday night and I’ve invited some of my favorite Nurses to join us – although I’m not certain if they will be able to come, a girl can hope! C will get to break in my new fold away guest bed – should be a hoot.

I got to go with T this week to a lecture on essential oils to heal ails in the brain. The lady that gave the lecture actually used conventional things, and oils to heal the cancer in her own brain – it was insightful and informative, and provided one of those quick infusions of hope. Hope is such a powerful thing. I’m so blessed to have so many people in my life that just randomly toss me a banquet of hope now and again. Got some hand written cards from two folks this week – and there is just something that touches my soul about opening up letters – like christmas cards, cards thru the rest of the year are even more impactful because they aren’t around that all overriding holiday – they are more well – they seem more powerful because they required more activation energy. Christmas seems to have alot of activation energy surrounding it already. These cards were so kind, so nice, and beautiful

The universe seems to be in a state of testing me right now. Not bad tests, just “are you really at this point now? ” – with a few right turns, unexpectedly. I’m adapting and showing “yes, yes I am” – and things seem to be improving. I’m not overly anxious about these tests, but they are – well I’m finding them more amusing as time goes on. Little things like the fact that after years and years of using water bottles all day, every day. and not having damaged or broken any. The past three months I have broken one a month. Including one of those hard plastic ones that just isn’t supposed to break. I have told the universe, no problem, we will use something else, I have had a plethora of alternative water bottles so it really is no sweat, just a little clean up. The unusualness of them breaking though has created one of those shake my head things. Go figure. Sometimes odd coincidences – maybe odd coincidences? If not, I’m certain I’ll get instructions on how to resolve this the best.

I am really thankful for all the incredible people in my life, and all of the prayers, and blessings they share with me on the regular. I’m working with God. He is working to cure my cancer, and heal my body. I’m a little stubborn, so I’m certain it would go faster if I’d step more out of the way. Here is to learning how to stop being my stop sign, and to helping things go as fast as they are able to go. For the most part many many more good days than anything else, and alot of learning as I heal.

Expect the unexpected

So had first chemo this week of a new treatment. (Enhertu) Seems to be doing well, but it will probably take a few for my body to get accustomed to it, and to learn how to maximize its abilities. So far mostly very tired – which is actually kinda a good sign, since generally, that would mean it’s doing something.

I have to say, this one has an unexpected unpleasant unusual side effect. I’m usually very good about keeping my gut in – well lets just say I’m regular – very regular – almost like clock work. This medication, is mucking with this. For the first time in a very very long time, I’m horrible constipated. When I say horrible – I mean with a capital H. I’ve got this gut that doesn’t do well with gas or bloating – and it somewhat makes me feel like the movie aliens, where things are trying to break out of that area. I feel like since having had surgery a few years back on my gut, it made a minor thing alot worse. I don’t think it was intentional but somehow the surgery made a space that was already pretty constricted much more constricted so discomfort feels so much unpleasant. This medication or some combination of it is accentuating this problem in all the wrong ways. Unknown to me last night, when I tried to massage my gut, I inadvertently unset my back – which made for quite an unpleasant night. Working now to double down on finding foods and things to fix this problem – its a bit of a struggle because its something I have made certain to be good at for a few years – but new meds mean stronger solutions. Go Figure.

On the positive side. There have been a few times over the years, when I have done a treatment that I KNOW it was working. This isn’t to say that all of the treatments have been bad, just a few were significantly better than others. For example, the first radiation I had last year, while I lost the first day, the rest of that series, I could feel it was working. I could feel a tiny bit of pain in the places where the radiation was killing off cancer cells. Small things, but powerful and important. This treatment feels the same! Its super exciting and inspiring. I’m working on curing my cancer, I have prayer, hope and god on my side. Lots of people working and believing in me, and this new treatment just makes me hope even more.

There are so many good and inspiring things in life right now. P turns 50 this year, it’s an inspiring year of good and positive things. I’ve been going with P to his veterans teaching class. He has been doing these classes for a bit, and I’ve talked to him about them alot, as well as talking to the students after the classes have finished. Its basically a non-profit that helps veterans learn a new skill of quality assurance testing. P thrives in teaching these, and the students are always interesting and diverse. This class is no exception, and I’ve met some amazing people already in these few weeks.

One thing I’m dealing with – or working thru dealing with – is from my recent hospital stay. I’m struggling with a sincere fear of being alone. It took until a few years ago for me to develop an appreciation for being alone at all, for the majority of my life its never been something I particularly enjoyed. The recent hospital stay made me somehow – maybe it was the situation that sent me to the hospital – not sure – just know that I’m super nervous to be alone. This has created some amazing opportunities to do some really fun things with the people I love. Its not that I couldn’t have done these things before, just now I’m doing them out of an odd sense, but it doesn’t seem to be making them any less enjoyable.

I’ve always been alot of a do-er type of personality, and now is no exception – I enjoy the going and doing, and its somewhat – well it just feels good. Somehow I just wish it wasn’t motivated by a discomfort for being alone. I’m hopeful I’ll get out of this rut or feeling of discontent eventually. I had finally, over the past few years, gotten to the point where I greatly enjoyed my time alone, and enjoyed my own company. Its not that I don’t enjoy my own company now, just more that I’m nervous to not have others around me.

I think its partially because I made a mistake. Over the past few years I’ve worked very hard to protect my liver, and minimize the amount and quantity of medications I’ve taken. Erring often on the side of avoiding them. I feel like in this case, I erred too long and low. I feel that perhaps if I’d have taken enough medication I wouldn’t have landed in the hospital. Its kind of a case of learning your limits by failing, just in this case it was a dangerous and uncomfortable lesson. I guess the time of dabbling with this is over, time to just take what the doctor says, and hope they are doing more help than harm.

Speaking of doctors and medicines. The doctor at the hospital put me on these incredible harsh anti seizure meds, and sent me to find a new neurologist to prescribe the next dose – they gave me 30 day supply. The neurologist I contacted can’t see me until 12 days after I run out of meds. So this because an interesting challenge to ensure that I get more of these controlled substance meds that I apparently now must keep taking to avoid the potentials of a seizure from failing to take them, while somehow getting a non-neurologist to prescribe for me. Go figure, interesting doctor things. In conversations with friends and family, this is apparently NOT a new problem. One would think that a hospital would provide enough of a prescription to cover you until another doctor could take over care, since it somewhat seems like they are “doing harm” which is against the doctors hippocratic oath, to prescribe something that is really bad for you if you stop it, but failing to ensure you have enough of it to not have to stop it. I suppose this is like the fine line between love and hate – fine line between help and hurt.

Its similar to the fact that this hospital – non profit one – that is close to my house, that I just love. None of my doctors have privileges at this hospital – and this hospital will not use my port for blood and medicines. Port that was installed at a hospital surgery 2 years ago to allow for me to not need to get all bruised up whenever they must give me fluids or meds. Instead, this hospital accessed six of my veins and left me with horrible bruises up and down all of my arms – including the one with the lymph nodes removed that they are not supposed to even try and access. I guess I can just keep hoping that they will get better and smarter and get certified to be able to use the port, and somehow my doctors will get privileges to see their patients at this hospital. I like this place – So probably it will be the one I’ll be back to if I need the hospital again, but it certainly would be nicer to know my doctors could see me there, without having to jump thru all sorts of hoops – its worth mentioning 2 of them did jump thru hoops even without privileges – this is why I love my doctors.

Going to wrap this up for now, with the hopes that I’ll have more things – exciting and promising things to talk about again soon. I’m being led to some things that are a little fuzzy right now, but I feel they will be very fun to share, soon.

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.