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June
21
2018

Keytruda

I have been quiet....waiting to see what the side effects are for the new treatment.  It is less hassle than the chemo treatments, as there is no neuropathy or chemo brain or intense nausea.  Instead, I have hives in various places all over my body for which I take Benadryl at night because it puts me to sleep.  There is a constant ache in my back, to the point I must stand and orient when rising from a prone position or risk a face plant.  A few other bits of pain or annoyance are present, but I can live with it all, key word being LIVE.  Over the past month I have been searching for the ideal job working online or in a facility where access to restroom facilities is close at hand.  That narrows it all down and so far, no go.  Being honest with a potential employer about my treating cancer will NOT happen again.  The law says no discrimination for a basket full of situations.  But, they DO discriminate, so no more honesty.  Learning to lie by omission.  Hope your lives have smoothed out, as we all have burdens to bear.  😊 
April
24
2018

Post Biopsy

In attendance today at oncology were my doc and I.  He spent about 15 minutes telling me about the new cancer (size, location, type, etc.) and how we're not going to ever cure it.  Duh.  Like ANY cancer has ever been cured!  As my sister said, the word is remission, not cure.  At any rate, as of now I have gone from Stage II to Stage IV.  I learned a new term...metastasized, meaning traveled to somewhere in the body that wasn't the site of origin.  Not sure I care what it's called, as long as it slows the hell down.  As for treatment, I won't be getting chemotherapy because I did not do well with side effects and will instead try Immunotherapy.  It is new to the "cure" scene and costs around $150,000 per year.  Yep, you read that right.  I am hoping one of my insurances covers it or I will need to go another route.  In response to my question of how long will I need this?...potentially, the rest of my life.  In response to my question am I terminal?....no.  So, long road ahead waiting to find out side effects and applying for SSDI and hopefully compensating funding with my photography....or something.  Same poo, different day.  LITERALLY!  Hair is getting longer slowly and eyebrows are...well, stalled out.  lol  TY supporters!!!!
April
10
2018

RANT

Scan report-two nodes lit up like a Christmas tree on a snowy night.  I went into the oncology office with the anticipation of being told 'you are good to go on with your life'.  How happy it would be.  But no.  Instead there were plans made for a biopsy and future Immunotherapy (new treatment but worse side effects) or a different type chemotherapy.  The more she talked the farther I slipped down in my chair and by the end, I was cupping my face.  CRAP!   I am not optimistic today.  There is no smile on my face and I have cried multiple times.  I am looking into SSDI because I am almost broke.  Even that will not fix it.  She said I may qualify for free or lowered Immunotherapy costs, as it is way expensive.  CRAP!  It pains me to admit that I am in a financial bind because I want nothing from anyone....ever...never.  My gut hurts when I think of feeling nauseated and chained to the thrown again.  Damn.  Just damn.  I want to go back to my private state where I earn a living and live a peaceful, productive life.  Since there are many of you who follow my progress and truly care, I am sharing my thoughts and results to date.  Not my style, but my necessity.  Perhaps a smile tomorrow.

April
9
2018

Apprehensive

Tomorrow is appointment with oncology to find out if the lymph nodes lit up on the scan....or not....or to schedule a procedure to get a sample from them.  My insides are upside down in anticipation.  Wish me well.

April
6
2018

Scan

Scan was uneventful but way freaky.  There's something kinda wrong with putting radioactive material voluntarily in your body.  The stuff was kept in containers like you see in "nuke the world" movies.  The scan tube was quite long and, after about 15 minutes in it, panic set in.  Luckily, I stuck it out another 5 minutes to the end of the test, all the while creating escape routes in my head (none were pretty).  The positives to the visit: lab lady had a good sense of humor, I now know where Aultman is located, and I got a few creative ideas from the magazines in the waiting area.  Results next Tuesday.  
March
30
2018

Oncology Visit 3/27/18

Gave blood (results were fine), got port flushed, and then saw Dr.  The enlarged lymph node is now being referred to in the plural.  The plan of action is this.  If PET scan does not light up, it is probably not cancer, but a biopsy will be needed to make sure.  Affected nodes are located in the rear of the abdomen and in a rather difficult spot to reach.  Oh, yea.  If the scan DOES light up, it is cancer and I will start chemotherapy again.  I am soooo hoping the scan is nice and dark and uneventful because, if I have to go again (and I WOULD choose it), I will be going in with way less enthusiasm than the first time.  I would also be labeled Stage III or IV.  Hurumph.  

Job hunting is at a standstill again.  Four days with my mother and then back for scan next Thursday.  I try not to think about the negatives of a job, more Aliens, money, a disastrous apartment, horrible sleep patterns, owing the IRS, and on and on.  Things tend to work out one way or another.  My sister is on point with sharing ANY funny things that occur in her day.  Thanks for the laughs, Julia!  I'm always trying to find positives.  I simply lose my way sometimes.








March
29
2018

Waiting

Waiting....the name of the game.  Waiting for PET scan time to be scheduled.  Waiting for chemo symptoms to stop affecting my world.  Waiting for some unseen HR person to look at my digitally sent resume/application and acknowledge they received it.  Waiting for the new gym to open.  Waiting for my hair to grow.  Waiting for focus.  Waiting and thinking and plotting and planning.  Just waiting.  Waiting.