Thursday, September 15, 2016

Don't ever give up.....

Today we had my monthly appointment with my oncologist and my CT Scan results from last Monday are in. The two tumors in my brain:  The left one has shrunk even more in fact, barely able to see it.  The right tumor can't be seen anymore at all.  My left lungs are clear and the two tumors in my right lungs:  One tumor is gone and the other barely registers.  Everything else is clear.  My oncologist says that the tumors are almost too small to register for the technicians....Yippee!!!!

I will admit...inwardly, I have been secretly down lately.  I have been having headaches daily and I thought for sure the brain cancer had spread and...I have been coughing so much lately...I figured the same thing for my lungs.  Nope...just issues with crappy eyesight is causing the headaches and probably early COPD is causing the lung problems.

And...I was feeling down because a friend of a friend was cancer free and I was jealous of her...not envious as I was happy for her results but, still jealous.  I have been walking around since I was diagnosed believing I was terminal (because the doctors said I was) and I was only trying to extend my life span.  It was hard celebrating her victory when I have been planning my death. 

I had myself all prepared for bad news today....I was not ready for the good news but, boy did I need to hear this and to see it in black and white with the CT Scan report.  I have been so scared to believe...even though I presented such a positive front...inside I have been shaking in my boots.  I can now stick my tongue out at the doctors who gave me eight months and say..."See, I told you not to count me out"...that was March 2014...still here!

As to other issues...somewhere I picked up an inner ear virus and ended up with severe vertigo and nausea.  A ear/nose/throat doctor confirmed it is Meniers Disease and am now on meds.  I feel like a drug store with all my pills.  But, it is working and that is all I care about.  I still want to sleep all the time (heart pills cause that) and my energy level sucks but, I feel like I am living for a change.  I hated the other chemo as it took almost the whole time to recover and I was back at treatment again. 

With the Nivolumab I can have a life and we can get away camping...seeing our new granddaughter...visiting family and spending the day with my brother and sister-in-law on the lake in a boat...having supper with the family...feeling normal.  I miss normal!!!!

So...we keep on with the treatments and see where the next six weeks takes me.  I am so swimming!

Tuesday, July 26, 2016


I have had a few Nivolumab treatments and it is going fine so far.  We had a CT scan at the sixth treatment mark and it showed no fact, the cancer is shrinking in!!!

I have lost my food aversion and I am eating regularly now...except chicken...still can't get that down.  I lost 23 lbs. so far and, thanks to visiting Quesnel this weekend...I have gained five back and I am going to lose that!!!  The dizziness, tiredness and weakness have let up and I am trying to walk each night again.

The only issue now the vertigo and vomiting.  That usually hits a week after treatment.  I went two treatments without it and I thought it was over...nope.  We went camping and the last three days I was sick.  Try packing up while the room is spinning...hubby wants to drain the tanks and I am still throwing up!!! It was interesting.

Nothing new to report....every second Wednesday is blood tests, Thursday is Dr. visit and Friday is treatment...then I get two weeks off until we do this again.

I am merrily swimming!!!

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....

Friday, February 5, 2016


What does one do when one wakes up at 1:00 a.m. and it feels like I had a shot of Red Bull and can't sleep....I go to the craft room and usually surf the internet. Last night I decided to gut and de-stash and re-organize everything including temporary labels...I don't have as much as I was worried I have and what I do have is now organized and labelled and so much easier.  Now I know what I have and can craft better.  I will replace the temporary labels with chalkboard ones later after everything is done and finalized....still may shift things around.

This is still the current mess. I have to clean some of the garbage up and figure out the last little stuff on the table.

Love, love my new paper shelves...color coded and everything.  Left side is card stock...right side is patterned paper.

I just need to sort and organize the far right which is all my beading supplies.


I adore this dresser from hold my embossing folders....dies....unmounted stamps, acrylic inks and the bottom left is deep enough for file folders.

The punches and stamps on the floor will be up for sale on Frazer Valley Craft Sight

I have to format this flipping computer as something went wrong when I went to Windows 10 and back to 8.1 cuz half my stuff was misiing....going for a clean install up to Windows 10 and try again.

Merrily swimming!

Off to finish this mess

Thursday, February 4, 2016

Head Shaving Party....

Hair here, hair everywhere.  Calling all!

My friends Jan, Gillian, Susan and Shannon came as friends do...Rhian brought out her razer...of course...a simple head shaving wasn't enough....she had to give her mother a mohawk!!!

Streamlined swimming now....

I feel like Harry Potter....

Do you believe in spirits?  I sure do.  I lost my friend Jose to cancer...actually, she beat the damned cancer and ended up with Lou Gehrig's disease.  I could feel her at my right shoulder but, no longer so...I am assuming she made the next leg of her journey.

I lost my dad April Fool's day last year (God can't believe it is almost a year).  His hand has been on my left shoulder and I can feel actual pressure.  Dad's hand has never left me and I know he is right by my side. 

Patrick and Don...Rick's two brothers we lost from cancer.  I never felt Patrick at all and I believe he just kept on going.  Don is here.  When I got my original diagnosis I could feel Don.  I miss that guy.  We used to have some really good battles...he loved to push my buttons and I loved to push we would get into some heated arguments! Anyway, I feel him around me all the time.  He and Val gave me a candle for my 60th birthday.  When Don is strongest I will light the candle and enjoy the peace it brings to me.

When I got the diagnosis of brain cancer and I blogged about it...I broke mom came and is at my right side.  My brother Butch is here too....I could feel him hugging me from behind.  That day was pretty rough but, I could so feel dad, mom and Butch surrounding me and holding me as I cried it all out.

So, like I said....I feel like Harry Potter who had his parents etc. at the end of the movie.  I find it such comfort and peace to feel my spirits.

Swimming nicely, thanks

Sunday, January 24, 2016

Houston....we have a hiccup!!!

Saw my chemo oncologist and we are no longer stable in the lungs.  Some tumors in the right lung are growing larger and he has taken me off chemotherapy for the it is no longer working.

He is sending me to New Westminster to see another oncologist there, Dr. Carol Mariano.  Apparently there is a new drug on the market (nivolumab)  that has been approved for use in Canada....of course, our government is not paying for it.  The drug company is providing it for free in some cases....I may not qualify because of the brain cancer.  All they can do is say yes or no!

He is also forwarding for the targeted treatment (even though my cancer does no qualify me) and also to the P.O.G. program.  All...based on my brain could disqualify me across the board.  The issue with the targeted and the genetic testing is my cancer tumors in the lungs are too small and they require five biopsies.

So...where does that leave me?  Waiting for the cancer to grow large enough for the biopsies.  Finishing my last radiation and LRHT tomorrow....waiting for the MRI on February 5th...see Dr. Mariano on the 15th.

As for the brain cancer....all I can do is hope that the radiation nuked them and there are no more tumors hiding so I can get the pin-point one shot radiation in Vancouver.

It was a rough week as my daughter Rhiann came to visit and go to all the appointments with me...rough time for her. She is strong...she has my genes.

I am swimming....keeping