Another good scan

My life has taken on this rhythm:  1 treatment per week for 3 weeks then one week off and then 3 more treatments then a CT Scan.  And another week off.  Cycle starts over as long as CT Scan shows stable disease.  This means not more then 20 % increase in visible disease and a bunch of other criteria that is studied by the technologist and the reasearch team at PMH.   Most of my disease locations are about 1.3 cm to 2.5 cm.  Also there is sprinkling of small spots within the peritoneum.  These are not measurable but exist as is typical with ovarian cancer.

There is also the CA 125 tumour marker measurement that is taken once a month.  This measurement has been creeping up the last several months but taken on its own merit is not 100% foolproof.  Current reading is up to 88.  It is also a test that is considered along with the CT Scans, my physical examinations and my verbal account of my general well being.  Nothing is simple.

Angel knows how to relax......

My scans of December 21st, 2015 and February 9th, 2016 were both good and progression of disease is classed as 'no progression'.  This is very good news and although I continue to worry I try not to think about it and look forward to my one week off when I do not have treatment and do not have to travel to Toronto!  I can't believe I have just started cycle 13.  It is almost a year of treatment on this clinical trial.

On the weeks of treatment my week is up and down in terms of my reaction to chemo and trial drug.  Wednesday and Thursday I am fairly wired and can do all the things I need to do around the house in terms of meals, laundry, cleaning, etc.  Those mornings I can get up @ 4:00 am and enjoy some tea while the house sleeps.  I try and get back to bed by 6:00 am to get some much needed sleep but sometimes it is impossible.  This is all the effect of dexamethasone which is a type of steroid.  By Friday I seem to crash and that day is ususally a down day.  A day to catch up on my shows that I have been recording.

One appointment that I went to in January was to the 'Pain and Sympton Management' department or 'Palliative Care' a name they don't like to use with someone like me who is still high functioning while managing through cancer.  ( I don't like to say fighting cancer.)  They are there to ensure cancer patients have the best quality of life.  And they are also there for the loved ones.  They are team which includes doctors, nurses, occupational therapists, physiotherapists, pharmacists, psychiatrists, social workers, spriritual care provider, and volunteers.

For me we discussed my current challenges with some discomforts and the doctor adjusted some of my meds and prescribed some others. We also discussed the merits of medical marijuana which is a part of their therapies.  These substances, which are also available in pill form without the highs, are most suited for patients with nausea, vomiting and chronic pain.  Luckily for me these are not major concerns for me and I take other good meds for these right now.  I next see them in April.

So I am very happy to be under their care as well are my primary medical team which are more focussed on my physical self, side effects and my emotional well being as a result of the clinical trial.  They are there to to help me deal with the cancer itself and how we manage through the disease with appropriate treatments.

Our 11 year old Cyrus!

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!