My sister-in-law is the best good fairy ever!

My sister-in-law made this the best ever Thanksgiving. She surprised me by bringing my niece and grand nephews from Texas. I had not seen my niece for 15 years since her wedding.  We brought other family and friends together for a rousing celebration of tears and laughter.  Twenty around the table from 80 to one  expected to arrive in January.

Today we surprise my almost 93 year old mom who is too fragile to go out.  Should be great.

It is a lot for which to be thankful.

Recovery is the “b” in my qbu nickname and this is a gentle post

Lying here listening to meditation music, playing around on my phone and Kindle because I overdid stuff about three weeks ago (pulled some chest muscles) and got sick on top of that.  Family insisted.  Friend suggested stapling me to the bed.

Between mental and physical breakdowns, I am still trying to build a business, get my cataracts fixed so I can do my arts projects. Would really like to use my kiln and finish an embroidery I designed more than a year ago. The new camera is sitting in its case.  Have to use automatic focus. Not much fun yet.

I am a bed bound advisor to family and friends.  Cooking coach to husband and daughter (they are doing very well). Have to read a political thesis by a young friend at RIT.  Just saw a great video of my Godson’s son at 11 months.  Viewed pictures from various family members who went to various places in Europe. Decided I wanted some Elvis music.  Need to order it. Listened to Poolside’s music. Some is good. Grandson is DJing at Drew’s campus station.  Miss teaching crazy Vampire & Sci-fi courses at OLLIRU.

My ranting is down, but acceptance of things as they are is not to my liking and is hard.  I have turned off talking heads on TV, pass over reading articles that light my fires and stopped trying to help organize everyone and thing around me or answer every question or request.   Unfortunately, I am still trying, not doing.

BUT I’M ALWAYS WONDERING IF THE CANCER IS STILL THERE.

 

Some ZOMBIES appear to be smart businessman ala this morning on CNBC

Here is a privileged tech savy guy explaining how an app with access to the pricing data of medical services, he used an example of 3 locations that provide MRI services, will allow “consumers” of medical services to make better financial decisions and choose the one that costs the least.

Obviuosly we do not live in the same world.

I might agree if all the stars line up, and the patient, not a consumer, was looking for wellness services and/or help with a minor problem, AND that person had a doctor who knew, what his services cost AND gave the patient options of what other service providers could be chosen or hospitals could be used while retaining said doctor’s services AND if the patient’s insurance covered said services AND the patient had several weeks to sort through all the options needed to resolve one minor health issue.

This is not normally the situation for the ill child’s parent, the accident victim, the college student who contracts a serious illness like meningitis, the person who has a heart attack, dog bite, cancer diagnosis, sports injury, depression, or just a high fever and pain.

Also just because three places offer the same service via an MRI device, does not mean the quality of service, staff and availability are the same. Not even businesses always take the low service bid.

Then comes this individual truly believing that all of his “consumers” have easy access to and can use tech, multiple doctor and hospital choices, etc. He also assumes they can read and reason at an above 4th grade level.  Check USA literacy stats and the latest reviews about the lack of the ability to reason our college graduates now exhibit.

HEALTH CARE IS NOT A CONSUMER BUSINESS.

 

Saying Good Bye to A Good Friend. Cancer took her one month ago.

I met a “Wonder Woman” two years ago on BCAN. Something clicked between us.  We have the same first name but lived on opposite coasts.  We both love reading, the arts, and travel.  The different intrigued us.  We had both lost sons way too early in their lives.  We are both outwardly hard and difficult but soft and gooey on the inside.  We love food and deplored exercise. We often felt like we were separated at birth some how.  She was truly my sister in every sense of the word.

We used email to communicate.  I loved getting one late at night or early morning. Knowing from the sound of my phone it was she.  She survived breast cancer, having stents in her veins, other problems and then bladder cancer.  We emailed when she got treatments and when I had surgery.

We promised to get together but cancer kept getting in the way.  Then in early Autumn, she and her husband just came to my east coast location.  We had two days to hug and talk and eat.  It was an unexpected present.  She travelled to Vermont to see the leaves, a real New England Autumn.

Then she collapsed and an inoperable brain tumor was discovered.  She managed to get home and we were in constant communication. She was to see the doctor on Monday. She had a hemorrhage and died Sunday night.

I miss her.  I know she is around me in all the wonder of the universe.  She was a beautiful, unexpected gift. I miss her.

Know your definitions

Just read a NY Times Reply All letter in Sunday Magazine.  A respondent about A.C.A./Obamacare is mistaken in her belief about nonprofits.  I wrote a letter to the newspaper with my issues with her letter and that they published it with no comments.  I am sure it will be lost in the ether.

Just know that nonprofits can and do make “profit”. They just call it net or excess revenue.  Any questions just ask or look it up.

Being in Clinical Trials for Cancer Treatment

I am now in my second clinical trial.  This time I am in the control group.  I receive what is known as standard care, not the medical bio/genetic treatment.  Who gets to be in which group is a random computer decision according to the paperwork I received.  Since we lab rats don’t actually get to be involved in the selection process I can only report what is told to me. Since I am a cynic by nature and have seen/read too many conspiracy stories and live in a world in which everyday businesses , ie the people who run them, cheat, cut corners, enslave people, etc for the need to be the biggest billionaire on the block, please excuse my skepticism on what “they” tell me.

That being said, I do hope that this process proves successful and quickly.  That likelihood is slim and probably 5 years away.

Zombies Are Obviously Running Things, Good Faries seem to be missing, but Cancer is still here.

In a bad mood. Chemo over, surgery over, recovery on going.  Zombie goverment (the brain dead) are still unable to design a citizen oriented healthcare system.  Good Fairies are seemingly staying out of the battle and talking heads (more Zombies) encourage people that all would be fine if they just inegotiate with their doctors for healthcare services.  This presumes that the doctors themselves can realistically price their services under the current plethora of insurance systems and service costs, unexpected outcomes, etc.  It also presumes that most patients can read documents beyond a fourth grade level and understand how to question doctors about treatment.

I have been one of the lucky ones. I have good coverage.  If you have read my other posts you will know some of my history.  I can not imagine what it is like for others without my education, insurance, savings and support system of family and friends.  This did not come to me without work but I recognize that too many people who work hard can never achieve what I have. It should NEVER mean that, at least in treatment, they should be made to suffer with either no treatment or less treatment than I have.

 

 

Zombies can show up as Fellows who think they are comedians; Good Fairies show up as the aide who hangs out past his end of work to make sure the Dr. is paged at 8 pm

Unable to sleep. Not too much discomfort.  Just can’t sleep. Dr. says give it 2 weeks for body to start to adjust.  Slight depression.

Biopsy report good.  We seemed to have removed the last tumor, still inside the walls of the ureter and all lymph nodes are clear. My right kidney is gone as well. 

Was advised I am still recovering from chemo too. I am impatient because everyday is precious to me and I feel they are wasted in this fatigue and recovery. 

One friend sent me a beautiful small glass globe with thin glass stems inside and flowers painted connecting them all into A 3-D patch of flowers.  Another friend ( adopted daughter) announced her engagement to a wonderful man. 

Life goes on and I want to be more involved. Obviously patience is a virtue I need to work on developing more fully.

Complained enough so signing off for tonight. 

Chemo last 9 weeks plus an infection made for very bad days.

Got through first 2 rounds of 3 weeks and did pretty well. Next 2 rounds of three weeks were pretty ugly.  Lost hair, appetite, got fevers, fatigue, brain fog, etc.

Next three weeks, while we set up of surgery, were much of the same. But once they put me on antibiotics things started to clear up.

CAT scan showed infection or inflammation of left lung.  By PET scan Thursday night it seemed to be resolving.  As o surgery has come and gone yesterday. Feeling better lousy and OK.

Will write more later.
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ZOMBIES can be unintended consequences of trying to be effecient; good Fairies are found in unexpected places; Chemo strange side effects

Been off the grid for a week+ because of Chemo side effects.  Just started my third round on Wednesday. So let’s tackle the issues raised in my title.

Zombie procedures and poor communication are at the center of what we now hope will be a thing of the past.  It is interesting that if I had been provided complete information at the beginning of my chemo, my stress levels would never have risen.  An information sheet of what to expect and how to handle the long waiting periods between drawing blood, clinic visit, lab results, (make note here) compounding of chemo drugs by pharmacy and the “efficiency” process of scheduling patients would go a long way to have avoided the qbu in me to come out on Wednesday.  The good Fairies were my two nurses, one from chemo and my best good fairy from clinic finally explained everything AND we decided on a plan of action that should eliminate stress.  NOTE that it was not explained that the chemo drugs could not be compounded until the labs came back and were okayed. Thus the long wait times. AND the lab and pharmacy are in different buildings.

Good Faries in unexpected places is the man who is at the garage where we park on chemo days and doctor visits.  He keeps our car on the main level, pulls it out so I can sit down in it before he gets paid and even makes sure the car is pointed to the correct exit.  He also told Paul about getting there before 10 am for the special.

Chemo side effects. Hair thinned but the hair cut I have is good for now. No need for a turban.  But I now have a very minor case of acne of the scalp.  My follicles are revolting against the drugs.   Also had a minor bout of nausea which is spelled “nasuea” on my prescription bottle.  Pill worked but stayed with smoothies yesterday.

Hoping to get back to communicating and being more active but will try to avoid stress as ordered (ha) and limit activity.

More than halfway there.