19 Jun 2011

Father's Day

The most difficult day of my journey hasn't been the surgeries, recurrences or chemos, but the day I had to tell my Dad that I had been diagnosed with ovarian cancer. 
I had been to the oncologist on a Friday and given the news.  They rushed me through all the pre-op procedures and tests so that I'd be ready for surgery the following week.  On arriving back home, I called Dad and asked if he and my step-Mother would be home the next day. 
My husband and I braced ourselves and went over.  I say "braced" as my Mother had died many years earlier from breast cancer and we weren't sure that Dad had ever fully healed from that experience.
We went over, I looked directly at him and said simply - "I've been diagnosed with ovarian cancer and am going to be operated on this Wednesday".  Dad was a rock.  If he was shocked, he showed no sign of it.  To the contrary, he said very calmly and quietly "You'll be all right".  He was so positive and steady in his resolve that it left no room for any doubts as to the outcome.
Weeks later, when chemo was approaching, he told me not to worry about anything that he had it all under control.  He informed me that he was launching "Operation Storming Heaven".  My Dad had recruited everyone he could think of to pray for me and that would be the secret weapon.  Quite possibly, it has been.
I have had discussions with my Dad that most daughters wouldn't dream of.  We have discussed death and dying - his and mine - the possibility that even though he is 88, I could precede him.  None of that has caused him to waiver  - in fact the only thing that has ever upset him was when a gossipy neighbour was exaggerating my condition to others after yet another recurrence - oh yes, and also when an ER surgeon sat at the end of my bed and gave me the "it's the end of the road" speech.
There are no words of sorrow and apology that I can express to my Dad for the pain and worry I feel I have caused him through all the ups and downs of this journey.  If he protests and says otherwise, I know him to not only be a very, very brave man but also a man of tremendous Belief.  
I can never adequately express my Gratitude and Love for his constancy, optimism and conviction other than shouting to the world  "I love you Dad - Happy Father's Day"!

10 Jun 2011

Secondary Oral Cancer

This article reveals the stunning news that long-term use of chemotherapy drug doxorubicin (PLD) is linked to secondary oral cancer.  PLD is very commonly and widely used in the management of ovarian cancer. 
It is known by oncologists, not generally known by dentists, and virtually unknown by cancer patients that chemotherapy drugs exit the body through channels other than urine.  In fact, the second most common route - up to 35% of the drugs - can dissipate through the salivary system - in other words through your saliva glands.
Do you wonder why foods suddenly taste differently when you're undergoing chemo?  Do you wonder why your saliva turns to sludge? 
You are instructed to drink copious amounts of liquids the day before, the days of and for ten days following chemotherapy.  You understand the reason for this to be protecting your liver and kidneys as well as assisting the chemo in its exit.  In addition to these directives,  you  need to pay attention to what it is that you're drinking and when.
Under our tab Coping With Chemo - section on Mouth Sores - I mention a few tricks that will help you activate your saliva glands.  Your saliva glands become very sluggish from chemo so stimulating them with something acidic such as sour lemon drops is an excellent way of  keeping your saliva flowing.  Drinking an unsweetened juice such as cranberry accomplishes the same thing.  (Caffeinated beverages such as coffee and black/green teas do not count in your daily totals as they are diuretics.)   Following up with a neutralizing mouthwash or a simple baking soda solution is essential to prevent tooth decay.    Drinking water throughout the night for the first five days after your chemo treatment is critical...if you find this task difficult, please imagine letting the drugs sit in your mouth overnight and think about the consequences.
While we're on the subject of how chemo leaves your body, you might also be reminded of some other favorite areas of departure - perspiration, nasal passages and importantly - tear ducts.
It's unfortunate that it takes an announcement of this gravity to highlite the very much overlooked subject of oral health and complication prevention while undergoing chemo.  I have more than a passing knowledge of what oral cancer entails - having once been married to someone who died from complications of the disease.  I'm not suggesting that lemon drops nor cranberry juice will prevent oral cancer but avoiding mouthsores - which are no doubt the start of what could develop into oral cancer - is very possible.

8 Jun 2011

The Business of Hope

As announced in my post "ASCO 2011", the annual oncology conference is presently in full swing.  Interestingly, CNBC has chosen to feature breaking news,  cover junior and senior drug companys' presentations and other items of interest this week on a daily feature they are calling The Business of Hope.  Big business from every possible angle.  As many of you know, corporate finance is my background so this is a subject - sadly, along with the subject matter - that is near and dear to my heart.
Of particular interest this week was the presentation by drug giant Roche/Genentech on their multi-billion dollar product known as Avastin.  This chemotherapy drug is widely used in a number of cancers and is currently in clinical trials for its potential use in ovarian cancer.  So far this week I've seen headlines about the drug which include the words "Roche Scores Again", "Statistically Significant", "Blockbuster Drug", "Boosts Survival"...are you excited yet?  Me too. 
Except... not.  The fine print reveals a 1.5 month increase in progression-free survival using Avastin plus standard chemotherapy versus receiving standard chemotherapy alone in newly treated patients.  The jury is still out on a separate ongoing clinical trial for the drug's use in women who have had previous chemotherapy cycles and are most likely to recur.  So far, the evidence indicates a possible 4 month progression-free advantage.  I've read estimates of the cost per cycle (normally 6 treatments) to be between $58,000 and $88,000. 
I don't know whether to be encouraged or discouraged.  On one hand, millions and millions of dollars are being spent to extend lives but at what real cost?  Not only do I mean hard dollars calculated almost on a per day basis, but nothing has been mentioned about the side-effects associated with, short or long term, living disease-free for that extra month and a half or four months.
We have a friend whose wife died on the ongoing Avastin trial.  The drug, which is a VEGF inhibitor (cuts off the blood supply to tumours) was so effective that it left a hole in her colon.  She is very much one of science's martyrs - a nurse, who knowingly participated for the overall good of others. 
We're all dealing in the business of hope - but we can do without the hystrionics in the headlines.

7 Jun 2011

SunflowerSisters is now on Twitter

For the Social Networkers - You can now follow us on Twitter @Sunflower_Sis. Hope to see you there!

3 Jun 2011

Don't Be Afraid To Ask

Remember my blog on Chemo #1 (see Chemo Plus 7) saying that I spent the first five days afterwards in a green funk?  I ended up requiring home nursing to administer an anti-emetic (nausea drug) by I.V.   I also mentioned that this side-effect was a first for me.  A first in almost four years. 
At my checkup this Tuesday, before Chemo #2, my medical oncologist asked "What happened?".  He couldn't figure it out and nor could I.  We both attributed the nausea to the proximity of the chemo treatment to my recent surgery and a very slim chance that the usual ondansetron medication that I took could have been stale-dated.  We left it at that - but I wasn't finished puzzling.
The biggest Chemo #1 mystery to me remained the speedy delivery of the carboplatin infusion - normally taking between 6-7 hours and took a remarkable 3 1/2 hours.  At the time, I questioned and questioned when the nurse said I was finished as to where the second bag of carboplatin was as I'd never seen such a small one.  I also questioned why we had a second set of anti-reaction drugs left over that had always been used in the past.  The only comment she had to offer was the efficiency of her care - I'll give her that.  She never let the I.V. pump beep more than twice without being on top a things - a REAL first.
Yet I kept a "niggling feeling" about the whole thing...  Always questionDon't be afraid to ask.
Yesterday was day two of Chemo #2.  The same small bag of carboplatin was hung  and before the nurse had a chance to open it I questioned its size again.  She was extremely co-operative after I told her that I thought something was not correct; something had changed and that possibly "that something" could have been the reason for my five-day nausea marathon. 
She dug deeper into my file and noted that all previous chemos used a  500ml bag of this drug.  The bag she was about to hang was 250ml.  Somehow, somebody in pharmacy decided put the same amount of drug in a more concentrated solution without changing the timing on delivery.  Are you confused yet?  Well, I wasn't.  What it meant was that the drug was essentially delivered to me at twice the speed so the concentration and speed must have been responsible for the reaction that set in immediately afterwards.  Upon that deduction, I insisted that my medical oncologist be notified and consulted on the change.  He was.  And he re-iterated his standing order for the original concentration - in 500ml.
Unfortunately, the pharmacy suffered the financial loss of having to destroy the prepared 250ml infusion - but hopefully, as a result, I've  gained back those five days.
Last night, I ate a full dinner.  This morning, I woke up hungry, not nauseated and haven't even taken my ondansetron yet.
As I looked around the chemo suite yesterday, I noted that the average age of patients being treated was probably 70+.  I worry about who advocates for them.  I worry about them not having adequate chemo coaches and I worry whether or not they're keeping medical diaries - even to the extent of noting specific drugs and their volumes.  How many of us have the courage to challenge and re-challenge the system? 
Listen to your inner voice and don't be afraid to ask.