Sunday, April 24, 2016

Grab a coffee/tea/wine...this is a long one....

So, back in February I was bouncing on pills and doing manic cleaning....finished my craft room, re-organized the pantry, spice cupboard and tupperware cupboard.  Then I started on the filing cabinet and sorted everything into piles.  Doing all of this being weaned off the pills...and I crashed.  No energy at all...dead weight...on the couch....sleeping all the time....curled under a blanket.  Everything is done except the family room has piles of stuff everywhere.

The end of February I woke up with a fever and it slowly climbed over the day.  I know anything over 38 is dangerous and I am supposed to go to the ER right away.  Just after supper it climbed to 39 and we headed out the door to Abbotsford ER.  Got seen relatively soon (for Abby) and they took blood pressure and checked heart and sent me for xrays.  Got xrays back...pneumonia...lovely!  They moved me from the front door where the police and security outnumbered the patients (typical weekend) to a private cubicle and brought in the defibrillator....ok...I saw the episode on Emergency at VGH where the lady's heart was racing and they zapped her.  Apparently so was mine!  They gave me a couple of shots in the IV to slow it down....please, please work...don't want to get zapped!  Phew...rate came down...oxygen levels were really low...blood pressure is really low...I now have something called "atrial fibrillation" I don't have enough to deal with!!  I guess I am not going home....nope.  12 days later I get released and go home.

Heart meds not only slow your heart down but, also everything else.  They have me on beta blockers...really low dosage because they can't put me on blood thinners (could cause a brain bleed).  As for the brain...Dr. Hsu cancelled the stereotactic radiation....guess I no longer qualified for it.  Good news though...the CT scan showed the brain cancer was shrinking and no new lesions.  The lung cancer is still growing but, just a bit.  We expected that as I haven't had chemo since the end of December.

Good news...February 15th I saw the new oncologist, Dr. Carol Mariano in New Westminster.  She is lucky if she is 5 feet tall and weighs 90 lbs.  She is a tiny, tiny dynamo!!!  There is a new drug on the market called Nivolumab getting great results in studies and trials in the USA.  Unlike chemo which attacks the cancer cells and kills them...along with the good cells....this drug is immunotherapy where it boosts your immune system to kill cancer cells on their own.  Anyway...Health Canada approved it for use in Canada but...not paying for it.  The drug company will fund some patient's treatment so...she is sending me for another MRI to see where we are at and then we will apply to the drug company to see if they will fund me.

March 23rd I had the new CT scan and it showed the lung cancer still growing but, again, just a bit.  To me..what is a bit?  To means nothing.  I remind myself that my cancer is still too small for biopsies so...I am still in good shape here.  The brain cancer had shrunk in half and there are no new lesions...good to go.

Back to Dr. Mariano's office on the 29th and we see Dr. Noble as Dr. Mariano is out of town.  She has her nerve!  We fill out the paperwork and the application form for the drug company...and we start praying!  We are back again on April 4th to see Dr. Noble and when I get to reception...she mentions my drug has arrived at the pharmacy.  Eureeka....we have drugs!.  Dr. Noble confirmed that I have been approved for the new drug and my treatments starts on April 8th. I have just had my second treatment on Friday and so side effects.  Still have nausea, weakness and tiredness from the heart meds...but, no reaction to Nivolumab.

We saw Dr. Mariano on Thursday and apparently Health Canada has now approved payment for the drug...again...eureeka!  Now to just get it administered in Abbotsford (her new project) so we don't have to drive all the way into Royal Columbia every second Friday...Rick really hates paying bridge tolls.

Then...along comes Saturday....feeling crappy....hurts to to emergency.  Worried I have a bladder infection and it could end up backing up into the kidneys...don't need that...Nivo is hard on the kidneys and they are monitoring them every treatment.  I love Chilliwack and out with a prescription for antibiotics in just over one hour! 

So...feeling better....drugs are working (at least the antibiotics).  Dr. Mariano says it will take about five treatments to see if they are working or not....fingers crossed!

Where I am at?  I will be glad to get some energy is a struggle to do anything.  The hospital stay killed my upbeat positive attitude.  I cheated on a card I made for my granddaughter's 4th birthday (and boy do I feel guilty)!!! I have been barely treading water lately.  However, getting the new drug...writing this posting has helped a great deal.  At least I can paddle around in the water now.  No matter how rough the past two months or so have been...I never gave up!

AND...I have lost 13 lbs....wouldn't recommend the journey but, will gladly accept the fallout!  Now I have to make a card for Mother's cheating.  It is in writing has to be done now!

Just swimming....