Current Scan Results

CT Scans are required as part of this trial every couple of months.  The progression of disease is closely monitored which in of itself causes some anxiety on my part, as you can imagine.  I mostly forget during this 2 month period that there is a test at the end and if the disease locations start to increase in size then there is a good chance I will be taken off trial.

My most current scan  was October 27th. Of course it was my week off from treatment and I had to schelp myself to Toronto for a 7:15 pm scan.  This is how they get scheduled and I have to adhere to the schedule as best I can.  I am grateful for the good old Greyhound bus to get me there stress free!

Thankfully that scan showed stable disease which meant I could continue with the trial and begin cycle 10.  This is the treatment that has given me the most benefit for the longest period of time.  All the side effects are worth it!

In November, David and it went to Mexico for a few days.  We stayed on Isla Mujeres at the same studio apartment as last year.  This apartment faces the Carribean Sea which is pretty rough.  No swimming here but you can sit and stare at the water all day.  It was a glorious and relaxing time!

Our Balcony

At the beginning of December I experienced more than usual fatigue several days after treatment.  I was in fact sick in bed for a day.  My head was especially painful.  At my next treatment appointment they sent me for a MRI on my head.  Luckily they found nothing but I could have told them that!  My doctors suspect I had a virus which is common this time of year.  Good hygiene and hand washing keeps the germs away but sometimes you just get sick.

Now it is time again for another scan on Monday, December 21st @ 9:45 am.  A more convenient time!  Even though I feel pretty well most of the time there is always that nagging voice in my head.     It is a challenge to silence that voice and distract myself.  Naturally with the Christmas season there is plenty to do even though we have cut down on some activities and social events which we might host.  We do have family coming on the 27th and everyone is helping out which is a blessing for me!

I am especially looking forward to seeing my sister and her husband this Christmas.  They are driving up from NYC on December 21st.  This will be a great Christmas!

Our Teal Sisters

Have you ever had to delete a contact from your email contact list because that person had died?

I have recently deleted 2 contact names in the last 2 months.  We lost 2 lovely women in our community.  I knew them as people with generous hearts and courage.  I heard their stories and felt badly when there was no longer any more treatments for them.

This is what many of us fear the most.  These are the clouds that hang over our heads but we must look forward and live life.  I don't believe that dwelling on the worst is good for the soul or body.  So this is why we must keep our faces to the sun so we cannot see the shadows.

Barter

Life has loveliness to sell,
All beautiful and splendid things,
Blue waves whitened on a cliff,
Soaring fire that sways and sings,
And children's faces looking up
Holding wonder like a cup.

Life has loveliness to sell,
Music like a curve of gold,
Scent of pine trees in the rain,
Eyes that love you, arms that hold,
And for your spirit's still delight,
Holy thoughts that star the night.

Spend all you have for loveliness,
Buy it and never count the cost;
For one white singing hour of peace
Count many a year of strife well lost,
And for a breath of ecstasy
Give all you have been, or could be.

Sara Teasdale

Source: http://www.familyfriendpoems.com/poem/barter-by-sara-teasdale#ixzz3m0EG8zCI
Family Friend Poems 

Ovarian Cancer Walk of Hope 2015

This year's Walk was a great success! As a team we raised about $6,000 and our district raised in excess of $83,000.00

It was a cool overcast day but that did not dampen our spirits!

My lovely nieces

The crew milling around after Walk

Katherine and David

That's me giving a short talk before the Walk

I get to cut the ribbon before Walk

A Late Summer Knight's Dream team

Here is a copy of my talk:

• Welcome everyone and thank you for coming!  This includes all Teal Sisters and anyone else living with cancer,  your family and friends and all your other caregivers.  As a person living with ovarian cancer I want to honour the presence of all our caregivers.  They remind us that life is for living.  I also want to thank my family and friends that are a part of my Team today!  I especially want to thank my husband David and my kids Corina and Dylan.  They are my rocks. 
• I was diagnosed in September 2010 after having subtle symptoms in my abdomen for about a month such as indigestion, bloating, difficulty eating and changes in urinary habits.  Within weeks I started swelling in the belly area with fluid until I appeared to be 9 months pregnant.  I had no idea what was happening.......After a series of tests I was diagnosed with ovarian cancer and things happened very quickly.  I started chemo on September 30th, 2010.   Once treatment ended I enjoy a remission of about 15 months but lived with anxiety that it would return and it did.  This disease unfortunately returns for many women and today I am living with Ovarian Cancer.  It is difficult to think of myself as a survivor because I think for the general public it has connotations of disease-free existence.   Since June of 2012 I  have had over 40 rounds of various chemo drugs and am currently participating in a clinical trial at Princess Margaret in Toronto.  I am getting good results in that the disease is stable.  So I think of myself as managing the disease as best as I can. 
• I do not describe my relationship with this disease as a 'battle' which many do especially in the media.  This is not a 'battle' whereby I have weapons to defend myself and therefore have a choice on outcome.  I do not.  I rely on solid research and modern science.   I try to keep up to date with cutting edge research which I can take advantage of and believe me I question everything and insist on knowing everything I can.  I truly have a relationship with my research team of gynecologic oncologists and clinical nurses which is integrated and in partnership.  This is the only way in my mind.  These people are the ones battling cancer by trying to find  treatments and ultimately a cure.  These are the people I rely on! 
• Life changes with a diagnoses with Cancer.  For me my world suddenly became a lot smaller.  Anything outside of my family and close friends is not very important.  The past is yesterday and does not count.  The future is yet to come and we have little control.  But today is for living.  I do not mean that we need to treat every day like it is our last because that would be exhausting.  I enjoy life on my terms and try to keep drama to a minimum.  I take notice of the things that bring me joy and peace everyday.  I try to keep my face to the sun so I cannot see the shadows.  I do not sweat the small stuff as it is really small stuff. 

Remember: 

• There is no screening test and no vaccine for this disease, it’s high time to make a change 
• September is Ovarian Cancer Awareness Month. It’s a great time to get our community talking about this disease because all women are at risk. Initiatives are underway to share the facts on ovarian cancer and to demand improved treatments and more research funding. 

• For lots of information about this disease and initiatives go to the Ovarian Cancer Canada website.   

• A great big thank you again for coming today and have a great Walk! 

Good News.......

I have been participating in this trial for several months and have successfully completed 4 cycles.  My CT Scan in May showed very little disease and my most current CA 125 indicates I am in normal range.  Normal range!  I have never been in normal range since the beginning of this journey!  This treatment is really doing something and I hope it continues.  I am feeling very well and am physically strong.

In June we traveled to Italy for 16 days.  We visited Sicily and then spent time in Rome and then the home town of my mother's.  It was a wonderful time and I am grateful to have had the chance to go to Europe once again.

Typical street in Ortigia

View from our terrace in Ortigia

Street level near our apartment in Ortigia

Fountain in Archimede's Square in Ortigia

Results from Mt. Etna erruption

One of the Silvestri craters

Market in Catania

View of Mt. Etna from Taormina

Another view of Mt. Etna

Study Treament

I have now completed 2 cycles of the clinical treatment.  My side effects have calmed down with reduced dosages of Gemcitabine and increased steroids.  The steroids certainly help but I am wired all the time and this increases insomnia.  When I finally finish taking the dosage 3 days after chemo then I kind of crash and have fatigue and headache for several days.  Impairs my daily living a bit in that all I want to do is seek the couch.  But I try to rest through the worst of it and continue with the things I want to do.

The other side effect that has worsened is the neuropathy.  This is weakness, numbing and tingling in the hands and feet.  My feet started becoming numb during my treatments with Taxol this past winter.  It started out slowly in the toes and then spread to the whole foot.  It ebbs in intensity and can be bothersome at times.  Sometimes I have cramping in the foot and that can be painful.  I have decided to start taking Gabapentin at night.  I have had this drug in my arsenal for quite a while but it makes me drowsy so I only take one capsule at night.  It seems to help calm things down which is my objective.

First Trial Treatment - Yikes

The thing with drug trials is that everything must be done in a timely and methodical way.  There is a schedule to follow and deviations should be minimal.  All parameters must be consistent or at least as consistent as possible.  And this is where it all falls apart.  We are humans and sometimes it is difficult to be consistent.  At least that is my take.  More on this later.......

My first trial treatment was Tuesday March 24th.  The treatment consists of a chemo drug (Gemcitabine) administered via IV and a mystery drug administered orally.  These drugs must be delivered together and the trial drug again within 24 hours.  Before treatment began blood sample was taken and an hour after treatment began another blood sample was taken.  After this blood samples were taken at prescribed intervals until I finished up 8 hours later.  Total chemo infusion time was only about 2 hours from start to finish but I had to wait around for the blood samples.  The very next day I had to take more of mystery drug and then 4 more blood samples were taken on a similar schedule and then I could go home.  This regiment of blood sampling is only for the 1st treatment and I believe at a later date.

The week before I started this trial I battled a cold with a mild dry cough.  Nothing major but 2 days after treatment I was in a bad way.  Fever, nausea, vomiting, diarrhea, and general flu like condition.  Into hospital I go and spend the next 4 days on antibiotics, pain killers, potassium and for a couple of days in isolation.  Not a great start to a trial.  On day 2 of hospital stay I develop a nasty rash on my lower extremities.  Another kick in the head.  Rash is hot and itchy.  So Benedryl comes into the picture.

After all this I have to get back down to Princess Margaret for 2nd treatment on March 31st.  I still have nasty rash but fever is non existent and I am feeling a little better but still kind of beat up.  They take one look at me and my bloodwork and determine I am in no shape for treatment so off I go home to recover from whatever all this was.  And that is the kicker.  No one seems to know what the cause is.  So many things are present:  new chemo treatment, new trial drug (or not), underlying cold and cough, flu bug...... who knows but it just knocked me down.

This past week (April 7th) I had my next treatment.  It is not considered number 2 but number 3 as per the schedule.  No make up treatment here.  This is the adherence to the schedule I spoke of above.  No matter.  Onward and upward.  The good researchers at PMH decided to cut back on my dosages to avoid the extreme reactions I had.  They are not really sure but this is the best option for now.  In addition I have another Skin biopsy and Tumour biopsy taken on April 9th.  I figure all hell is going to break loose again with all the activity but I am coming through it pretty well.  A little help with good meds doesn't hurt either.  I felt a some flu like symptoms yesterday and am still a little weak today but I can do things slowly but surely around the house.

And the best thing......the ascites seems to have calmed down.  I hope this treatment keeps it under control for awhile.  Nothing sucks as much as not having your clothes fit.....

The weather is finally starting to warm up.  It has been a long and hard winter.  All of our snow is finally gone!

Getting Closer to Trial Start

Back from Florida the evening of the 16th and into Princess Margaret by 7:00 am on St. Patrick's Day.  Bloodwork first thing and then a consultation with the clinical nurse and clinical researcher.  Much was discussed regarding the study and procedures namely the skin biopsy and the tumour biopsy scheduled later that day.  A skin biopsy is used to study the effects of the study drug on the tissues of my body.  The skin biopsy is done before the study and at various intervals during the study.  The tissue removed in a tumour biopsy is studied to see the effects of the study drug on tumour tissue.  Again, it is done at various intervals during the study.

Needless to say by end of day I was feeling a bit like a human pin cushion with all the various procedures and was glad to head home to my brother's place.  Thank goodness drugs used during the tumour biopsy (fentanyl) were still in play and pain was not an issue.

On the 19th I had an appointment with my oncologist at Grand River.  Again she likes to keep tabs on me while under the care at Princess Margaret.  I have been having ascites again as I mentioned in previous posts and have had 3 paracentesis in the last month.  It gets very uncomfortable by day 10 or so and my clothes are not fitting.  Each time at least 3.5 litres is removed.  Afterwards my guts feel tender but I am more comfortable.  Is it time to rethink some of my clothing options?  Yes.  I think so.  More looser fitting clothes will be in my future.  I need to look at my pattern and fabric stash!

The oncologist has scheduled me for a catheter to be installed near the hip.  (I picture a little tube like the ones on beach balls!)  This will enable easy access for a nurse to come to the house to remove fluid build up periodically rather than going to hospital every week or so for a paracentesis.  This could be done every 3 days or so and I know it sounds gross but at least I will be more comfortable.

Treatment begins next Tuesday and I am hoping I will get the AZD-1775 and not the placebo.

Clinical Trial Hopeful

Well I am back on track to enter the clinical trial I described back in October 2014.  Now that the Taxol is less than effective the disease seems to be active and is clearly visible on the CT Scan.  As I mentioned before there is also ascites.  I've already had one paracentesis and they removed 3.25 litres of fluid (Feb 27).  Of course the fluid doesn't not stop building up unless there is some chemo treatment or something.

My appointment this past Monday (Mar 2nd) at Princess Margaret confirmed the active disease and the need to get me into that clinical trial as soon as possible.  I have a date for a biopsy (Mar 17).  This is one of the criteria of the trial and other diagnostics that have to take place before treatment can begin.  So I have a bit of time to nip down to Florida and visit with my Mom and Uncle and Aunt.  Franca is also going and I will be grateful for a bit of warmth and sunshine.
Hopefully I will be starting my trial treatment on March 25th.  It will be a start to a new journey!

Well that was a short ride...... My CA 125 as of February 19th is now 222.  Up from a reading in the low 90's (my home hospital)  (42 at Princess Margaret Hospital) and naturally I knew it would be higher because this blasted ascites is acting up.  Again I am swelling in the belly and there is some discomfort.  Don't feel sad for me because I just feel pissed.

I feel angry at my body for betraying me because most chemo treatments start out effective but quickly end up doing nothing.   I feel angry at science because the options for treatment are so hit and miss.  I saw on the news last night how they have come up with a diagnostic test for ebola so that results are available in 15 minutes.  Amazing!  When there is a will and lots of $$$ they will find a way.  Unfortunately for ovarian cancer and for many other cancers or diseases, research dollars are hard to come by and the money must be used judiciously.  OK... That was my rant and I'm over it.

I have an appointment Monday morning at Princess Margaret Cancer Centre.  Hopefully they will come up with a new treatment plan or clinical trial for me.

Good Results from Taxol Treatments

My CT Scan taken on January 12th is showing very little sign of disease!  Compared to the scan taken on November 18th the largest site of disease went from 22 mm to 8 mm.  And my CA 125 is at 42 down from a high of 497 in November!  Queue the fireworks!

The clinical researchers at Princess Margaret Hospital have recommended that I continue with the weekly Taxol treatments rather than begin a clinical trial.  This makes sense.  Why try something new that may not work as well as something that is currently working?  The only drawback is that the neuropathy in my hands is getting worse and now I have it in my toes.  If it worsens too much then the Taxol treatments have to stop but for now I am going for it.  With such good results it is difficult to change the protocol to something else that may not work.

I have already heard from Grand River Regional Cancer Centre and my next chemo treatment is Monday.  It will be 3 weeks out of 4 for the next little while so now I can plan my life somewhat!

Plugging Along with Taxol

I have now completed 6 rounds of Taxol.  Minimal side effects which is awesome except for my loss of hair.... again.....  Not sure of my current CA 125 numbers but they generally go up before they go down so I am hoping for good results with the next text.

I am scheduled for a CT Scan at Princess Margaret Hospital on January 12th.  This one of the first requirements for the clinical trial.  Hopefully I will continue to qualify and participate.

In December, David and I went to Isla Mujeres in Mexico for a one week holiday.  It was relaxing and wonderful to be in warmth.

Playa Norte

Playa Norte

Rocky Beach outside our Studio Apartment

Churros - YUM!

Barlitos Bar

Resident at Barlitos Bar

Creative Mexican Wiring

Local Church - Check out view of Caribbean Sea

Sunset from dock at Barlitos Bar

Punta Sur

Punta Sur

Punta Sur

Strolling Along the Malecon