Wednesday, May 10, 2017

Now what?

Still going for blood work every two days...my kidney levels are still up and down.  All treatments have been cancelled and my oncologist says I may lose out on the program but, there are other options.

I am scheduled for a kidney biopsy on the 15th and I am being weaned off of Prednisone and down from 100mg per day to 50mg and now I am on 25mg per day.  Restless legs were driving me crazy and my family doctor put me on Gabapentin....not working so, she doubled the dose and that seems to help a lot.  I keep teasing that I am falling apart!

All tests and lab work should be in by the end of the month and I do my follow-ups with the Nephrologyst and my oncologist on the 31st.

Forgot to take my pills at 9:00 and I am wide awake and doing paperwork.  Got everything done and I am hoping in another hour the pills kick in and I can go to bed. 

Off to read my Kobo for awhile....swimming in the dark!!!


Tuesday, April 25, 2017

Insoimnia is driving me nuts.....

I am on so many pills right now....Meniers Disease, A-Fib, Prednisone etc., etc. and no sleep.  It is like the old days when I was swinging from the trees on Dexamethasone. 

Treatments were going really good.  I had an awesone CT Scan result at the beginning of March...everything is stable and shrinking.  Then I had a treatment on March 24th and I crashed.  Major dizziness, nausea, weekness and super tired...no energy.  I got a phone call from my oncologist at 10:00 telling me my kidneys had stopped filtering and I was to go back on high doses of Prednisone and get blood tests every day for 10 days.  Not impressed!

I was scheduled for an ultrasound and it came back....no stones, no damage but, no one knows what is going on.  One day my kidney level may be down and the next day it is through the roof again.  I am now going every second day for bloodwork. 

My treatments for April 7th and 21st were cancelled and we had tentatively scheduled the next one for May 5th.  According to the doctor two days ago...that is not going to happen.  He did reassure us that I am still on the program and when and if we get my kidneys functioning...treatments will resume.

So, my life consists of visiting the "vampires" every second day....not sleeping...so flipping tired and week all the time.

To add insult to injury...we got rear-ended in February.  So now we are dealing with insurance companies,..car got fixed and I am off to therapy for my neck and right shoulder.  When the seat belt retracted it wrenched the heck out of it.  As if that wasn't enough some jacka*ss tried to break into our RV in the compound.  Couldn't get passed the deadbolt...love old reliable RV's.  But, they did destroy the door and a new one is on it's way.  I have a dream catcher in the window in the door and the repair shop ordered a blank door so they can transfer my window to the new door.  Wonderful people at Cottonwood RV.

No plans other than caming in between hospital labwork.

Just swimming!

Saturday, December 31, 2016

Reflections...

It has been a year of surprises...some good...some not so good. 

We started the year with a scare as they found two brain tumors and they stopped my maintenance chemo and it was on to full radiation with LRHT for ten treatments.  It seemed to work as the cancer stopped growing and shrunk.

My oncologist sent me to another oncologist and an application for immunotherapy was approved and I started the new wonder drug Nivolumab....and...the cancer kept shrinking and shrinking and shrinking to the point the tumors are too small to measure.

It was a year of living a normal life for the first time in almost three years...travel, camping, visiting children...enjoying life.  It was also a year of babies...in March our son and daughter-in-law presented us with our sixth grandchild, Clare Elizabeth and she is perfect.  Our niece and nephew-in-law in Kamloops had a baby girl in October, Jade.  Our nephew and niece-in-law in Chilliwack had a baby boy, Tate.  But, sadly we lost him one month later.  Our other nephew and niece-in-law had a baby girl, Amy and...we ended the year with our niece and nephew-in-law in Arizona had a baby boy, Asher.

It was a year of finding other people going through the same thing I am and on the same treatment who quickly became a friend (yes Lisa, that is you).  It was being able to walk into the doctor's office on the 20th to see my old oncologist who gave me eight months three years ago and tell him, "Told you I wasn't going anywhere" and getting a smile from him.  I will take every opportunity to turn a negative into a positive...helps with living.

The year started shaky but ended up on a very high note.  I am eternally grateful for the love and support of my family and friends...who, without you I would not have made it this far...Rick, who loves to push my buttons but, who has my back...drives me everywhere, including crazy...sits through every treatment...travels with his Kobo because he never knows when I say, "Can we stop at Michael's".

I wish everyone a happy new year and may your next year be full of blessings....no matter what, keep swimming.

Sunday, December 11, 2016

Man, it's been awhile....

Trust me...nothing major has happened.  I have been going for blood work every second Wednesday...followed by treatment on the Friday.  The only issue there is..it is getting harder and harder to find a vein.  Last treatment it took four pokes and two of them hit a nerve...ouch!  The nurse talked to my doctor and they are finally going to put a port in.  I don't know what was up with Dr. Keith in the beginning as he doesn't like them.  Well...he can deal with all the pokes!!!    I am scheduled for surgery on the 14th and I can't wait...treatment on the 16th...no more pain!

It has been wonderful to have a "normal" life for a change...lots of camping...though we stay close to home.  Meniers is under control...thanks to drugs.  Babies, babies...nieces and nephews having babies...we have two girls and two boys.  Sadly, we lost Tate as he was born two months and two days early.  Complications and I now have another angel watching over me.  I love being a great auntie!

Last CT scan came back with more awesome news.  The brain cancer:  One tumor gone...the other is still shrinking.  Lung cancer:  Both tumors are too small to measure.  I am slowly relaxing about it and starting to believe.

Swimming merrily.


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

Update.....

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 growth...in fact, the cancer is shrinking in half...yahoo!!!

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"...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....