Joys of Summer with Heavy Doses of Dread

It has been a good summer.  Weather has not been great but no chemo.  Still on a rest from carboplatin after having a severe reaction in June.  Making sure to find joy in every day.  Sure is tough especially with my Dad suffering with pancreatic cancer.  He has deteriorated quite a lot and my Mother is still able to provide care at home.  I don't know for how long.  She is adamant that she will keep him there as long as possible.

Dad has just finished 2 weeks of radiation.  Radiation is used to alleviate pain, it is not used for treatment in his case.  There is no treatment for him and the inevitable will occur within 6 months to a year, at best.  The family has come to accept the seriousness of the situation and we try to spend as much time together as possible.  It is a time to make my Dad as comfortable as possible and make his remaining life as pleasant as possible.  It has been very tough for my Mother as you can imagine.

Franca came for a visit in July and we had a lovely time.  During her visit we celebrated Corina's graduation from Conestoga College.  She is a Health Administrator and is working at Stratford Hospital in Patient Registration until her contract is finished.  Tough to find those permanent full time positions!  She will persevere!

Corina's Graduation Day

Graduation

Corina's Graduation Party in July

Franca making herself useful

This past summer we were able to get my Mom and Dad to Pat's cottage for a couple of great weekends.

Mom at the helm

Dad enjoying the cruise

Viewing the Sunset at Cordova Lake

Dylan is at Mohawk College and has just started his program in Applied Music.  We miss him but we hear from him via texts all the time.  I wish I could see him doing the laundry!  :)

As for me....  I have been having some pain in my abdomen which means the cancer is making itself be known.  CA 125 is up to 386 which is up from 40 a couple of months ago.  It never was gone but it was quiet in a sense.  It gave me the time to relax and enjoy the summer without dealing with chemo side effects.  But now I must begin chemo again.

I have been scheduled for the 1st infusion for Monday, September 16th  in the chemo lounge.  Should only take a couple of hours and I will do this every 4 weeks perhaps for 8 treatments.  This time around we are going with pegylated liposomal DOXOrubicin or Doxil for short.

Wish me luck.  I will post my experience with this drug.

Enjoy the weekend!

Ovarian Cancer Walk of Hope - 2013

This year's walk was quite successful.  The participants in the K-W region raised over $75,000 which is more than double last year's efforts!  My team, 'A Late Summer Knight's Dream' raised more than $2700. It was a beautiful Sunday morning and the weather was perfect for our 5 km. walk.   Thanks to my teammates: Caroline Robic, Angie Felgendreher, Carol Dewar and Joanna Mackie.  A special thanks to my husband David for participating as well!  

So many people participated in the walk that they ran out of t-shirts for the registrants!  This is a good problem in that many more people join us on the day of the walk.

Our small but mighty team!

Making sure my toenail colour is perfect!

Ribbon cutting ceremony before the walk

Follow up with Oncologist July 15th

Blood work is great and CA 125 is down to 40.  I am prepared to be admitted for my next chemo and Dr. tells me that my reaction to Carboplatin on June 25th was a 'severe'one.  Who knew?  I knew that I did not care for how I felt during that reaction and that my recovery after chemo was not as easy as the last time.  I had a week of headache and lethargy.  Not myself at all.

Doctor explained that reaction was not good and that more Carboplatin may cause another reaction (very probable) with risk of lowered blood pressure which is not good at all.  Could end up in ICU.  We discussed the idea of taking a break for 6 weeks and revisiting chemo with another drug.  I was all for this.  I feel good.  The CA 125 is in a better place and I feel I can monitor my body to let my doctor know if anything is amiss during this 6 week period.

So for now I am in hiatus of sorts!  Glad not to have to get chemo but a bit nervous about what is happening inside.

Update on my Dad:  We have seen a surgeon, an oncologist and a radiologist.  All are quite negative regarding his prognosis and there is little hope.  We have been in contact with a pancreatic cancer specialist in Toronto and he ordered new scans and diagnostics.  They were all sent to him late last week for second opinion regarding his diagnosis of pancreatic cancer.  We are hoping for a slim chance of surgery or something.  Dad's quality of life is good and he is in good spirits.  Many people have come to see him and he enjoys the company.  We just wish he would eat a little more.  He is losing weight and can be quite weak at times.

Pictures of Europe

Promised I would post some pictures of our trip to Europe!

The iconic Eiffel Tower

View of Arc de Triomphe down the Champs Ellysees

Pyramid at the Louvre

Arc de Triomphe

Medieval Castle at Carcassonne, France

View of Nice from Castle Hill

Promenade des Anglais, Nice

Riomaggiore, Cinque Terre

Riomaggiore, Cinque Terre

Replica of Statue of David in Michelangelo Square in Florence

Another replica in the Palazzo della Signora.  Original is in the Ufizi Gallery.

View of Duomo and Sante Croce

The Vatican

Castel Sant'angelo

Colosseum

Trevi Fountain

Recurrence # 2 - Treatment #2

We are back from Europe and I will get my act together to download some pictures and post on this blog.  In the meantime there are a few pictures on my Facebook page.  And I could not resist and posted some internet pictures at the end of this posting.

The day after returning from Rome I was in the doctor's office at 11:30 am for my scheduled appointment.  Since we were away my regular appointment should have been 3 weeks after 1st treatment.  It was now 4 weeks.  Since my next treatment was imminent she found me a hospital bed and I was admitted within the hour.  (check my last post regarding the reasons for admittance)

Having done my paperwork they gave me a pass to return home as long as I was back by 10:00 pm.  The night nurse kindly was informed me my CA 125 count was at 65, down from 125.  This is good news in that it means the treatment is doing the job. 

So on Tuesday, June 25th my Carboplatin chemo started and as you will recall it is a long infusion.  My first treatment back in May went without a hitch but within the hour I started experiencing a reaction.  What a f**king drag.... Some of the symptoms were headache, red and itchy hands and red and itchy feet.  I also starting breaking out with some hives.  Usual course of action is to stop everything and give me more benedryl and steriods.  They have also starting using something called Singulair. 

Instead of finishing up by 9:00 pm it was well past 10:00 pm and the on call doctor wanted me to spend the second night.  What can you do?  Suck it up and read.  Up by 4:00 am though.....  All the steriods in my system have me wired and I found a computer in the family lounge.  What luck!

In other news we are unhappy to report that my Dad has been diagnosed with pancreatic cancer.  Had a visit with the surgeon while we were away but my Mom and Dad came away very unhappy with his negative prognosis and his lack of empathy.  So my brother has arranged meetings with several oncologists and radiologists to get second opinions and hopefully a treatment plan.  So at this point we do not know much.  This on top of his stroke in March is not great but we all pulling together as a family.  We have much strength!

Here are some pictures from our trip that I culled from the internet.  Just wanted to give you a taste of what we saw.  Michelangelo's Pieta is breathtaking in terms of the subject matter and the beautiful work.  It is made of marble and a fun fact... Mary is represented very youthful when she was probably a woman in her 50's with her 33 year old son.  Michelangelo was 23 when he sculpted this piece for a cardinal funeral monument.  Amazing.

La Pieta, St. Peter's Basilica in Vatican City

 

Coleseum in Rome

Eiffel Tower in Paris

Medieval City in Carcassonne, France

Beast is Back.....

When I am dancing with NED (no evidence of disease) you may notice that I don't post very often.  While I am living my life I don't always  relay all the good things about living life to it's fullest.  Things like the warm sun on your face, the smell of fresh cut grass, the look on your dog's face when you ask if it is time for a walk, the taste of a well crafted cocktail, the thrill of an upcoming vacation, a good laugh with family and friends, good food, etc, etc,......

These are the things I love and try to experience and enjoy everyday.  Then something comes along to knock you down.  And I hate to sound like a downer but sometimes it just pisses me off.......

The Highline

My last follow up appointment with the oncologist was April 25th.  My bloodwork indicated the CA 125 marker came back elevated.  This warranted a CT Scan which was scheduled for May16th.  By the way on May 17th we headed for New York with Dylan for the long weekend.  We had a great time and although the weather did not cooperate we did not let that stop us.  Unfortunately, Corina did not come with us.  She has finished her college program and is looking for work.  Anyone know of a health administration job opening?

Freedom Tower

Near Battery Park and NJ in the background

Dylan 

On May 22nd my oncologist let me know that the cancer was back once again.  There is a 3.5 cm tumour on the upper left hand side of my abdomen and some nodules through out the peritoneum.  Next we had the discussion of treatment which she wanted to begin right away.  I also wanted to start right away because we are leaving for Europe on June 7th and I want to have some semblance of health to enjoy ourselves.

My treatment protocol has been Taxol/Carboplatin regiment.  Very common and widely used for ovarian cancer all over the world.  However, like many people the Taxol has been debilitating to my body and so it is no longer an option.  It has left me with neuropathy in my hands.  Thankfully not my feet like some people.  Having more Taxol would only ensure further nerve damage in my hands and then my feet.  Not a good thing!  The treatment of cancer involves toxic chemicals that build toxicity in the body.  Major drawback...

Another factor in the treatment discussion is the length of time since my last treatment.  Last time I had chemo was September 2012.  In the chemo world the treatment is considered ineffective if there is less than 6 months since the last treatment.  I am at the 7th month mark and my oncologist had to decide whether to give me Carboplatin alone or with something else.  In addition you may recall from my earlier post that I reacted to Carboplatin the last time.  The answer to this is an extended infusion period to mitigate any reaction.

We decided together to go with Carbo only and very next day I had a call from hospital at 2:30 pm to ask me to come around 4:00 pm to be admitted so chemo could be administered all the next day.  How to make a dull situation a little more lively?  There is not much that can be done.  When I was not passed out from the benedryl I was fully awake and able to read.  I had several room mates during my time at hospital but I know from past experience that other cancer patients are not that chatty and I was not either.  I finally got to go home @ 9:30 Friday night.  Good news is that I did not have any reaction.  Just bored out of my mind.....

Genetic Testing

I just read a news article about Angelina Jolie and how she had a double mastectomy and reconstruction surgery.  She was found to have the BRCA1 mutation.  To me this just shows how she was proactive to get the testing done and take action to protect herself from breast and ovarian cancer.  I think this is awesome!

In my situation I had genetic testing after my treatment ended after my first bout with ovarian cancer in March of 2011.  Genetic testing is very easy.  It is a simple blood test.  It is sent to a special lab and the results come back within a couple of months.  Before any testing I sat down with a genetic counsellor at the cancer centre.  We discussed my family history and all incidences of cancer within the family.  There are actually very few incidences in the family but I qualified for paid genetic testing by our provincial government because of my recent cancer and my age.  I was found to have the BRCA2 mutation.

Some background info:

90% of all breast and ovarian cancers are considered sporadic, due to a combination of factors such as age, lifestyle, environment and chance.  The average woman's lifetime risk of breast cancer is in the range of 8-12% or about 1 in 10, and the average woman's lifetime risk of ovarian cancer is about 1.5% or 1 in 70.  The remaining 10% of breast and ovarian cancers are considered hereditary, due to an inherited mutation in a cancer-related gene such as BRCA1 or BRCA2.  Mutations in the BRCA1 or BRCA2 genes are associated with a high lifetime risk of breast cancer and ovarian cancer in women, as well as male breast and prostate cancers and possible other cancers to a lesser degree.  For individuals who carry a BRCA1 or BRCA2 mutation, each of their children will have a 50% chance of inheriting this mutation and also be at increased risk for these cancers.

A POSITIVE result indicates that a mutation has been identified in BRCA1 or BRCA2 which is known to be associated with increased lifetime risk for breast (40-85%) and ovarian (20-40%) cancers, male breast and prostate cancers, and possible other cancers. Genetic testing would then be available to blood relatives.

This means my chances of breast cancer has greatly increased and with this information we can take preventative measures like Angelina Jolie.  We had several meetings with the genetic counsellor to discuss what this all means and you can imagine how stressful this is.  I have not chosen the same route as AJ but my screening for breast cancer has stepped up a couple of notches.  I have an annual mammogram and a MRI.  This is the standard for high risk screening.

What this also means is that I inherited this mutation from one of my parents and it was found to be my father.  It also means he is at higher risk for certain cancers.  This also means he is now screened more frequently than before.  It also means my siblings may be at risk as well. And my children......

With this information it also means that my father's siblings and their children and their children may be carrying this gene and this gives them the opportunity to have meaningful discussions with their own physicians.  But I know that even though the information is out there it does not mean that people take action.  This is why I am so impressed by what Angelina Jolie did and at her age.  It is a brave thing because it is human nature to deny and therefore delay.