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

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

Saturday, January 9, 2016


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

I had been having issues with my vision for awhile and I attributed it to chemo 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 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 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 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'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 friend...I love you to the moon and 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 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 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!