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"...like 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 them...it 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 far...no 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 pee....off 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 hospital...in 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 back....it is a struggle to do anything.  The hospital stay killed my mojo...my energy...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 Day...no cheating.  It is in writing so...it has to be done now!

Just swimming....

Friday, February 5, 2016

So.....

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.
Labelled.....














Labelled....

I adore this dresser from Ikea...it 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 there...hair everywhere.  Calling all friends...wine/cheese/shaver!

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 his...man 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 down....my 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 moment....as 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 cancer...it 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 busy....crafting....living.



Tuesday, January 12, 2016

May the force be with me....

Today was day one of ten days of radiation....going to nuke these puppies right out of my head.  I had a very positive meeting with my naturopathic oncologist.  We went over the CT results and good news...the two lesions are no where near my cortex so...my functions will not be impaired (okay, quit laughing...I am not already impaired).

We are putting the LRHT treatments on hold for my lungs and nailing my brain cancer with five of them.  Dr. Parma says my lungs are stable enough to hold off and...they are already "primed" to receive the treatments so...apparently, they will get residual affects from the brain treatment....two this week, two next week and the last one on the final day.

Not feeling too bad...tired.  The swelling in my head doesn't seem to be going down fast enough... trouble with my vision...floaters everywhere.  Seems like a lot of pressure pressing on my eyes and the headaches are settling down to just aches but, the doctor increased my Dexamethazone to three a day hoping to get this taken care of.

So...my Buck Rogers ray gun is up and running and I am merrily swimming.

Saturday, January 9, 2016

Hello....


Hang onto your hats...it's going to be a bumpy ride!


I had been having issues with my vision for awhile and I attributed it to chemo as...my vision craps out right after chemo and sucks for about two weeks.  I had my eyes examined by a specialist on December 10th and he couldn't find anything wrong.  Then we went on the cruise...no chemo for six week and my vision was great...I could see everything without my vision glasses. On the cruise I had started to develop migraines....thought it was vertigo induced migraines caused by the motion of the ship.  One day we were sitting in a restaurant in Cozumel and I tried to read the menu.  The words were all over the page and I couldn't make out what they said...Rick had to tell me what was on the menu.  After lunch, we went back to the cruise ship...popped some Tylenol, had a nap and everything was fine.

Christmas Eve I was reading my tablet and it started again...I knew the letters in the words but, just couldn't make the connections.  When I saw Dr. Keith before my chemo on the 30th I mentioned it to him and he scheduled a CT Scan for January 5th and set up an appointment with the radiation oncologist, Dr. Hsu.  While we were waiting for the results, Rick was driving me into town last Thursday and the "halos" of the migraines started up and I couldn't see half the road signs...I mean, one side was a bit blurry but the other side of it was...just not there!

We got the results yesterday.  Dr. Hsu walked into the room and I said, "Still here!".  He was quite surprised and pleased to see me (I mean, I had beat his time frame),  I told him my friend said to tell him I do not have an expiration date stamped on my ass.   He asked me if I knew why I was there and I said, "CT results".  He said, "Yes.  What do you think?"  I took one look at his face and I knew...my world just dropped through the floor...I said, "cancer in the brain" and he said, Yes".

I have developed two lesions in my brain, one on each side.  Hello, the cancer in my lungs is still stable but.....  I knew already that there was a possibility of this happening as lung cancer almost always spreads to the brain...and, I am Stage 4 metastatic. 

Radiation right away...fourteen treatments and I will lose my pretty silver hair again.  He is scheduling an MRI as he wants to see exactly how many lesions there are...the CT shows two (one the size of a nickel and the other the size of a quarter).  The treatments will be done in Abbotsford but, there is one treatment he wants done and his machine is only in Vancouver.  If there are more than the two and...maybe one tiny one...he can do the second radiation treatment. 

I asked Dr. Hsu how much time I had....he said, "You don't have an expiry date".  I told him there were things I had to do and things I needed to do for my kids and grandkids and I needed to know how much time I had...he said one year but, with you....could be longer.

Then I asked him when my hair was going to fall out...he was reluctant to say...hello, I am not going to fall apart because my hair is going...I will rock the bald!  I don't want to find it all over my counter, on my pillow...in my food.  He said by the end of January....head shaving party!

So...we are back on the rough road again.  Yesterday was hell - telling all the kids and family and close friends...if I missed you personally...it's not because you aren't important to me...just was too much!  I couldn't find my footing...was alternating from numb to terror and getting lost in the middle with nothing to hang onto...I was becoming overwhelmed with all the I things I was going to miss out on doing...projects, learning...the new stuff I bought for the craft room.  I called Haroldine and cancelled my order for stuff...Rick lost it and came up behind me while I was on the phone...put his arms around me and pleaded for me not to give up.  I cancelled the cancel!  I had a beautiful conversation with Haroldine and I am eternally grateful.

He took the dog for a walk and the walls closed in on my...panic set in and i couldn't think of anything but to grab the phone and...call Marj....my friend...I love you to the moon and back...you gave me back my courage and strength...then the doorbell rang and my step-sister and brother-in-law (Judy and Gord) showed up and gave me what else I needed...hugs, two bottles of wine and a taste of normalcy and I got "me" back.  My mojo, my strength, my determination.

I won't tell you I am not terrified...I won't tell you I am not looking forward to this at all.  After being stable for so long...it was a real kick in the teeth.

I am not going to concentrate on the negative...I am not going to focus on what I will never do but, on what I will be able to do.  I am going to live as much as I can...I am going to love my kids and grandkids as much as I can.  I am going to fight as long as as hard as I can.  I was going through my notepad on my phone and found this that I had saved ages ago and haven't got around into my chemo book: 

Hope is powerful.  
Hope can be your everything when it feels like you have nothing.
Even if all signs are pointing to demise, have a little hope.
It can be your light at the end of whatever tunnel you are going through.

So, my children...I adore you...I love all five of you and my five and tidbit grandchildren to the mood and back...hang on to this...I am!

Then there is Dory...she landed in my Christmas stocking this year.  

There are two links with this...play them both and hold on with me.  I feel every one of you in the water with me swimming...I feel the love coming my way and it gives me courage and strength.

Just keep swimming...for I am!