Oh Creativity, where have you gone?

First, I need to update my previous post-I wanted to see Trainspotting 2 but due to circumstances and $5 Tuesdays I saw the new people version of Beauty and the Beast. As an  8o’s mom I have seen the Disney animated version of this story at least 1,000,000 times but this is a slightly darker story and I really enjoyed it. Being the total romance skeptic that I am it was a little too sugary at the end but hey there must be someone out there that lives happily ever after?

I used to be a pretty creative person-creative and crafty and full of ideas. Lately I am just dry-black and white-parched. Not sure if it’s due to my situation, unstable living arrangements, break ups or just general malaise. I currently have a crochet project sitting untouched and a whole stained glass work shop set up but gathering dust.

I recently had a gush of awake-day dream-imaginative ideas about my garden. It felt good and something I used to feel quite often so just like a lusty libido-which also has left me-i know it’s still there buried under the weight of “life”.

I am pushing myself, browsing Pinterest for ideas and building on some success in the time management department. I learned that if you repeat something 16 times it becomes a habit. I’ve proved that to myself with my boot camp attendance, it took many attempts but I’m finally there. Maybe I can transfer this approach to my stained glass? If I make a commitment to go to the basement everyday after work and just “be there” after 16 times it will be a habit and something creative will come out of it? Kind of twist on fake it til you make it?

My daughter gave me a piece of glass that I made long ago and said it doesn’t have any hanging hardware so maybe that will be step one. Yes, that’s it. Step one— add hardware to hang a piece that is already complete. How hard can that be?

Lion

I’m on a roll-I did in fact move from the comfort of my bed and go see movie with my daughter. We chose Lion.

It was good, really good. Set in India and Australia which is always nice to see something other than the same run of the mill American drama/comedy. It did a lot to show the reality of childhood, families and poverty in India.

I’m not saying everyone will love it but I would definitely recommend it.

One thing-the lady who sat two seats away from me, older with a cane, alone…cried through the whole movie. I got a tear or two but she cried-nose blowing crying.

Best of all, this fulfills my new years resolution for February!!

2016 was not a good year

In fact I will contend that it was in the top 5 worst years of my whole life. And when you compare it with the year my parents got divorced and the year I found out (with three small children) that my husband of 15 years was addicted to heroin that’s some pretty stiff competition.

I’m not sure if i mentioned how it started – although technically it was the last week of 2015 it set the whole year off with a bang…or should I say squeak.

My then boyfriend, roommate, potential soulmate left for Christmas to visit his family on the east coast-totally fine, his parents are getting old and he wants to spend time with them. What wasn’t fine is that we had seen a few mice before he left and with his usual carefree, nothing will go wrong attitude he said he would wait til he got back to call an exterminator.

I’m all for taking responsibility and in this case I failed to express my very deep disgust for mice.

So we both have our nice respective Christmases except the day after he is still with his family but I am alone in his apartment. So, feeling a little lonely I take a nap and then go to run a bath. As I glance at the sink, I see this:img_0771

Now I don’t have great vision these days but I know something is up so I get closer to see what this is and of course what it is is a mouse-in the bathroom sink!

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I text this photo to boyfriend and this is where his supreme lack of concern takes on epic proportions-he replies “How cute!”

By the time he realizes that was probably not the best choice of responses I have my bags packed waiting for my sons to pick up my stuff.

This becomes the 2016 “mouse incident”. It becomes my go to example of how little regard he has for me.

At this time we are co-owners of a medical cannabis associated business which is having lots of issues and everything becomes more complicated and strained since we don’t talk to each other for most of January and February.

He periodically takes sides against me in the business and resorts to screaming at me and criticizing my lack of business knowledge-I’m just a “government worker”–I don’t have any management skills…even though I was only supposed to be an investor and have a full time job already.

By April, we kind of make up and I have surgery looming so he mans up and says he will take care of me afterward especially since I wasn’t able to drive for 6 weeks. The surgery went as well as could be expected but hey, surgery is not pleasant under any circumstances.

The undercurrent throughout this whole period is of course the presidential campaign and for whatever crazy reason my hippie peace loving boyfriend was enamoured and sucked in to the Trump bullshit. I really just ignored most of it thinking that he was either A) trying to get a rise out of me or B) just wanting attention by posting Trump shit on facebook. Either way, I tried to ignore it and honestly I don’t care who people voted for but I draw the line at listening to fake news at breakfast. Some of the insane items he tried to force down my throat were 1) Hilary had a neurological condition 2) Michelle Obama was a man 3)Michelle Obama never gave birth 4) of course Barack Obama was not born in the US 5) climate change is not real…

I give him credit for taking some good photos of my incision, img_1094picked me up promptly from work~~~~but I still did an awful lot for myself and for him during that time.

The other shoe dropped on July 15, 2016. the day of the attempted coup d’etat in Turkey. we were with his son at Chipoltle and still taking in the whole situation. Again keeping in mind that I lived in Turkey for one year, I have friends there and I just visited in 2015 and he knows that. He went on to tell his son that everyone who had been killed in the coup were Muslims and nobody should be surprised because the Koran tells Muslims to “kill”. WTF??? what the bloody fucking hell??

On the way home when I expressed my displeasure at his total disregard for facts and disputed his broad sweeping generalizations…he screamed at me me that I was “naive” and not as informed as him.

Again, I packed my belongings and left while he laid on the sofa playing with his phone. no apology. Later his excuse was that he’s Italian, he shouts, get over it.

in addition to this drama, my daughter got a divorce and my brother was undergoing chemo and all that associated palova.

The year has ended-the business has closed and I am single. i recently told my ex that I used to put up with bullshit in relationships, I have been trapped in unhappy relationships because of financial/legal constraints but no more. I have a home, a home he refused to live in and rarely even visited.

2017 is off to a good start. I got a bonus at work based on an excellent performance review, got a big fat tax refund, recovered some of the money I lost on the business and enjoying my grandson. I have a few vacation plans swirling around in my head~~

  • California drive vs fly. obviuosly driving makes it a cross country trek
  • England-canal boat
  • European vacation-fly to England, Eurostar to Paris, rent a car and drive to Italy. Stay in a quiet place in Italy and reverse.

 

England….again?

After living in England for 8 years, working as a nurse for 7 years and 180 days and having a small house over there… I maintain a precarious immigration status called ILR-Indefinite Leave to Remain.

It’s more than a work permit but less than citizenship. In the event that I eventually want to exercise my right to apply for British citizenship I will have to show:

  • Indefinite leave to remain or “equivalent” for this purpose must have been held for 12 months
  • the applicant must intend to continue to live in the UK or work overseas for the UK government or a British corporation or association
  • the same “good character” standards apply as for those married to British citizens
  • the same language and knowledge of life in the UK standards apply as for those married to British citizens

There is a caveat to ILR in that “intend to live in the UK”  is generally interpreted as no more than 2 years without a visit. So I have visited my friends and house/tenants 3 times in the past 6 years for the all important passport stamp in my second/expired passport that holds my ILR.

Once again in January, I traveled to England like I was just sporting off to the other side of town. Seriously, I have made this trip so many times it’s like second nature. On this trip I really thought about how this is the only place, of the many I have visited, that I have returned to again and again.

I have lots of emotional connections to this particular part of England and there are several friends I love to see

Maybe someday I’ll move back there…

The cancer rollercoaster

My brother has been so ridiculously optimistic through all of this. I feel both conflicted and guilty-I don’t want to squash his hope but somebody needs to be realistic here. Does anyone really survive T4N3M1 tongue cancer more than a year…or two max?

I just spoke with Dr. K and I guess I’m some kind of oncological wunderkind.  That’s great.  Wunderbar.  So keep your peepers peeled for my article in the New England Journal of Medicine.  I’m going to title it “The Man Who Kicked Cancer in the Balls and Ran Away Laughing”.

The next day  I spoke to Dr K and she addressed my concerns that either she was not being clear with him, he was not processing what she tells him or he was sugar coating everything for my benefit-she assured me that the exact word she used when talking to him was “incurable”. After his visit with his primary care MD I got a text~

Apparently unwilling to leave any parade unrained upon, Dr T hastened to explain that the masses in my mouth and neck are still there, they’re just smaller. And the average life expectancy for my type of cancer is 10 months.

During my discussion Dr K had told me that in cases like his they are usually talking months but my brother has never asked her details like that. Can you blame him??

He must have texted me as soon as he left the office because I got this awhile later

It’s a drizzly, shitty day.  I passed a funeral procession on the way back from Hines and I pictured what mine will look like.  I see 1985 Ford station wagon with a cargo strap across the back to keep my mortal remains from sliding out at red lights, and you in your little green Fiat with the headlights on, slamming a double cheeseburger because you’re on your lunch hour and have to get back to work.
It’s part of her job to not let patient’s hope grow to unrealistic proportions.  Maybe it’s unfair of me to think that Dr. Tran seems to like that part of her job.
I told him that I don’t think any doctor likes telling a patient news like that. From my experience though a doctor (or nurse) has to come off with a sense of authority so as not to be seen as wavering or weak. If my doctor is going to tell me I’m going to die in 10 months I don’t want them to giggle through that talk.
He went very quiet for a few hours and I wondered what must he be thinking – would he just decide to end it all now that it has been laid out in black and white? That’s what he told me months ago when he first arrived. So, imagine my relief and happiness to get this characteristic message
I ain’t beat.
Dr. K had mentioned T-Cell Immunotherapy.  There was a segment on NPR about it today and it is well worth looking into.  The American medical community is, of course, reluctant to try anything until Big Pharma signs off on it, which could take years.
There are clinics in Mexico who can deliver it right now, today.  It’s only been proven effective against a limited spectrum of cancers.  I need to find out if the one of my have is in that group.
Dr. T gave me some anti-anxiety pills.  She wanted to put me back on Prozac, which caused me to lay awake all night thinking of the best way to kill myself, or back on Celexa, which made me feel like my head was full of sawdust.
We settled on the minimum dosage of hydroxazine.  Truth be told, anxiety is much less of a problem than it was before I was diagnosed.  Death is no longer some mystical, distant thing.  It’s at the door and asking for me.
I am recovering well from my surgery and was able to have him and my son over last night. He actually does look very well and ate like a king. He enjoys the conversation and is genuinely an interesting and funny person to be with.
I worry about the future, I worry a lot but we have some fun stuff coming up and I am determined to help him enjoy life as long as he can.

Caregiver’s Holiday

I am at loose ends

being hit from all sides-because it’s not not like I’m some spinster with nothing and nobody else to worry about…

I have a full-time job, 3 adult children in various stages of divorce, under-employment, quarter life angst….and  a boyfriend who just wants me to be “close to him”. Really?

Did I mention I have my own surgery coming up April 28th?

The reality is I am close to tears most of the time as in all day, every day. Almost anything anyone says to me-good, bad or indifferent (hate indifferent) sets off a cascade of physical reactions. My heart races and my head gets very warm. I can’t think, I pace, I mumble and take deep breaths.

Recognizing this crisis situation, I now have an appointment with a counselor on Monday. I’m not sure I will make it to Monday or if counseling will help. Today I considered calling the vets crisis line…I am a vet…Xanax seems like a good option.

Oh, wait-I titled this post “caregiver’s holiday” and forgot that I actually went away overnight last weekend. Feeling the need to escape and disappear I booked a posh room at a nice hotel about 100 miles away for BF (boyfriend) and me. The hotel was fab, he was mediocre. No, I do not feel rested or rejuvenated – the room as nice as it was did not have a bath…

I’m back to the same incessant demands-my brother is now complaining about the water pressure in my house. Not once but several times…with links to wikipedia and plumbers.

He is now 5 weeks in and is feeling the effects of the chemo and radiation. He says he is cold all the time-he has a space heater set at 82 degrees and still wears a hoodie. The radiation is causing swelling in his neck and he is coughing a lot.

The silver lining on this dark, dark cloud is that we are entering birthday season in the Inner Fire family. Everyone except my daughter in law has birthdays between now and June 24th. The plan is to squeeze in as many summer nights around this puppy as we can!

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The homecoming

My brother will be coming home after an unexpected 3 week stay in the hospital. The routine appointment that turned into a trach, g tube and port placement.

Coming home means going to my former apartment upstairs in my big bungalow 2 flat.

I’m tickled pink to have my space back-I moved out 18 months ago on a roundabout of trying to find happiness. To New York and back-not that any of those places was bad…in fact I loved them all but now?

Now I want to be in one place. I need to have one home, my home.

I own this place, I work to pay the mortgage on this place.

I am more than happy to share it with my brother, my son, daughter in law, grandson and younger son.

Tomorrow I will unpack boxes and set up medical equipment-suction, IV pole, humidifier….

I have designated a whole counter for my brother to set up his tracheostomy and feeding tube accessories

This is my life now