Timeline of a Setback

In complex systems, when one thing goes wrong, it can trigger a chain of events leading to a setack regardless of efforts to correct the process. In the aftermath there is a lot of finger pointing, anger and unnecessary anxiety.

Back in June 9th Pace's operation was set for July 28th, it was confirmed on July 26 pm for Hotel Dieu.

July 27th Pace gets a voice mail at 4:00 saying that the operation has been moved to Notre Dame and that it would be a day surgery. We're confused as the doctors have said she'd be in the hospital for 3-4 days following surgery. However, we can't reach anyone to answer our questions and so with the attutide that all is good and on track.

July 28
7:00 am - Pace, her Maman and I arrive at Notre Dame and Pace gets her blood work done
7:30 am - assigned a room where Dr. Rami's patents await their turn for surgery.
Pace and I spoon together and nap on the gurney.
9:00 am - Another patient arrives she's 81 and is going first to get a lump the size of a cherry removed. Nurse 1 takes Pace's blood pressure and other vital signs.
10:15 - Our senior patient comes back from surgery
10:30 - Patient 2 arrives, I'm a little P.O.ed as she appears to be late and may be holding up the process for Pace. Suppposedly her tests at St.Luc took longer than expected. I'm annoyed but wish her well as Nurse 2 takes her to surgery.
11:30 - Operation starts on Patient 2
11:45 - Nurse 3 comes by and gives us Pace's room number for her 4 days of recovery at the hospital
12:00 - Nurse 2 comes to get Pace and take her for her radiation injection
12:30 - Hospital Administration takes the decision to cancel Pace's surgery
12:45 - We get back to the room and settle in for the wait again
1:15 - Nurse 4 comes in to tell us the operation is cancelled.
2:30 - Dr. Rami shows up, he's upset and explains that;

• The surgery was cancelled along with 6 other ones
• This happens more often that you would think
• It happens in Ontario too
• Not to worry about the radiation from the injection; it was not that high a dose
• The prime window for surgery following Neoadjuvant Chemotherapy is 4 to 6 weeks.
• June 29 to July 28 is 4 weeks
• The next date for surgery will be August 18, which is 7 weeks following the end of the chemotherapy but because Pace responded so well to the chemo "he's" not concerned about the extra week past the recommended window.
• It's vacation time and the hospital is short staffed
• We may be able to get the surgery performed earlier of there are other cancellations

About this time I'm ready to turn into the Hulk and break things. However, I channel my anger (anger is an energy) towards doing somehting positive and head off to find the hospital's ombudsman.

2:45 - I show up at the "complaints office." it starts awkwardly. The secretary can't find Pace on the list of surgeries to be performed that day, but she does show as a patient. I'm told they'll get on it and a report will be issued within 45 days. Just then the ombudsman comes out of her office gets Pace's information and starts making calls.

3:30 - I catch up with Pace and France, we leave and go get some sushi before heading back to "la maison"

And the nurse said “We’re so sorry, we’ve got some bad news…”

So we got to the hospital for 7:00am. Pace went through all of the necessary tests and she was told the room she would be recovering in. We settled in, waiting for the time they’d come to get her for surgery. We’ve known about this day for a month and I’ve rearranged my schedule and taken holidays to be here to help with the start of Pace's recovery. Two other patients of Dr. Rami were put in the same room. An 81 year old woman was getting a tumor the size of a cherry removed from her remaining breast, and younger wonan in her late 30s was getting a lumpectomy. One by one they were taken to the operating theatre.

About 12:00 I accompanied Pace to the room where they injected her with a radioactive serum. They made 5 injections into her breast to check if or how far the cancer had spread to her lymph nodes. There is a blue dye or a radioactive isotope used for this proceedure. The radioactive one is supposed to reduce the possibility of error for the doctor.

Pace was told there would be a small burning sensation. I’ve learned from experience when a nurse or a dentist or doctor says there will be a small amount of pain, they’re usually lying. She said it burned going in and stayed that way for 10 minutes.

About 12:45 that proceedure was finished and we were taken back up to the hospital day room because they isotope needs to settle into the breast for a bit in order to do it’s job.

About 1:15 a small soft spoken nurse comes to Pace and says “We’re so sorry; your surgery has been cancelled.”

Pace looked shocked, I felt like I’d taken a heavy punch to the gut. Pace’s mom Francine was lost for words; and let me tell you that when my mother in law is lost for words it’s a rare moment.

Then she said. “they always make us tell the patient. The doctor will be coming to see you.”

“So what’s the new date for the operation?” I asked.

“You’ll have to call the Doctor’s secretary for her to reschedule.” She replied.

The 81 year old lady who had been operated on first speaks up, “they told me if they didn’t operate on me this morning that there would be nothing available until August 18.”

I imagine myself expressing my anger by throwing things, and denting the lockers with my fists and feet or maybe knocking a couple of heads together. The feeling loses some intensity bit still remains.

The nurse says again “we’re so sorry” and leaves.

Ninety minutes later we’re still waiting for the doctor. Pace is sleeping and her mom went to get something to eat. I can’t eat, I am beyond angry and adrenaline has shut down my appetite.

The tyranny of genetics

Dr. Rami called Pace today and told her over the phone that the results of the genetic test that started in Late January. I'm not a fan of getting medical news over the phone.

Pace has tested positive for a variation on her BRCA1 gene. The lifetime chance of developing breast and potentially ovarian cancer increases if she inherits an altered BRCA1 or BRCA2 gene.

Women with an inherited alteration in one of these genes have an increased risk of developing these cancers at a young age, before menopause, and often have multiple close family members with the disease. These women may also have an increased chance of developing colon cancer.

There is a 50% chance that the Wee One also carries the altered gene. Given the rate of progrss with genetics, I am somewhat concerned but not borrowing trouble.

He's back!

Good news today. Pace's oncological surgeon, Dr. Rami arrived back in Montreal on Sunday night. Things appear to be a go for the operation on Friday. We're keeping our fingers crossed.

disbelief and the forgetfulness of chemo brain

We’re both feeling kind of dragged out this weekend. I think it is the stress of the impending operation and the fact that we still do not know if her surgeon has been able to get out of Lebanon.

If someone was writing a script I don’t think this situation would never make it past an editor. The whole scenario as a possibility is too implausible; “The Young and the Restless” maybe, but in any other media that takes itself seriously, I doubt it.

Pace commented that for the last couple of days that she was having trouble with the side effects of her chemotherapy. Her face has been numb; she’s been feeling ill and not herself, really tired generally right out sorts. In my guy way, the solution according to logic was that it must be the cumulative effects of the chemo and that it is going to take some time to flush from the system.

Last night Pace told me that she’d forgotten to take the meds for the side effects of the chemo. Once she started to take them again she felt better, but still not 100%

What did I ever do to Hezbollah?

As I'm talking to Pace last night she tells me the nurses called... We knew Pace's oncology surgeon was on holidays, what we didn't know was that his holiday was in Lebanon.

So how do you get home to Canada, on schedule, when the Beirut airport was bombed and can't be used, bridges on key highways are bombed out limiting internal transportation and there is a naval blockade?

The Hezbollah oath to eradicate Israel has created a ripple effect on Pace's treatment schedule. We are a global village and the impact of the $h!t-disturbers respects no borders.

We won't know if surgery proceeds on July 28th until we know. Why they chose to tell us now I have no idea. Tenterhook time!

I can't wait till when the pendulum swings back and incredible things happen in a good way.

It's amazing what active listening can do

On Pace's request our good friends Louise and James, came to our aid the evening of our meltdown. James asked Pace and I to come to his office the following day.

His synopsis is that we're both "type a" personalities and that we both want to have our version of "the answer" prevail. So I sat, listened and kept my mouth shut while Pace talked. Pace then had to listen to me without interupting. The goal was to improve our mutual understanding, as we were both formulating a response to what is being said, rather than listening attentively.

I think we'd both heard each other saying the same thing time and time again so that rather than paying attention, we'd focus on winning the argument. That could not happen in this structured conversation.

It was time well spent. All of the stress is hard to compartmentalize at times.

In praise of ... Kylie Minogue

I never would have imagined myself as a Kylie Minogue fan, but she's used her celebrity status to make a difference. Even if I think her music is disposable pop dance fluff, I respect her resolve.

Here are some quotes from her interview this weekend about fighting Breast Cancer;
"...I was just completely thrown into another world"
"I don't want to go into the doom and gloom of it. It's hard"
“The family's totally ... it's like a bomb has dropped"
"It's a very steep learning curve"

Asked at what moment the news she had cancer sunk in, she replies: "It's still sinking in."

Minogue admits her parents were upset when she opted to have chemotherapy in Paris, the home of her boyfriend, rather than near their home in Melbourne. Sound familiar?

Keep up the fight!

Guardian Unlimited Arts Arts news In praise of ... Kylie Minogue

So some think the blog's too clincial? Well here's some schadenfreude for you!

Pace got feedback that the Blog's name should be changed from "Keeping Pace" to "Breast Cancer: a Technical Journal." For future reference, the easiest and least hurtful way to be a critic is press the comments button at the bottom of the post. Please direct your commentary on this blog my way not Pace’s.

So this entry's for those who've been waiting for some great schadenfreude.

Pace got in on Friday and we've had an unmitigated emotional fiasco, more crying and yelling episodes in these days than I can remember in our entire relationship.

I know my stress comes from: the potential of losing Pace, the uncertainty of raising the wee one on my own, having exhausted my financial resources, reduced to living from paycheck to paycheck, obliged to the charity of family and friends to make ends meet, being stuck with a frustrating contract that doesn't pay the bills, watching as new and necessary expenses for drug treatments add onto the existing prescriptions, and then the necessary expenses just pile up.

It just doesn't seem to matter how much I cut back, cancel services and sell off assets, new carcinoeconomic expenses eat the surplus and more. (Anyone want to buy a CD collection?)

Add to that the reality of maintaining a 5 1/2 room apartment where I sleep only 4-5 nights a week. The place has been falling apart, (4 water leaks from the apartment above since December, to start). Two weeks ago I discovered my clothes and the plaster wall of my closet was soaking wet from a bathtub leak upstairs. It took 3 long nights of washing to get my clothes clean. Then there’s the drywall and plaster dust that the contractors left behind, try getting that out of your stuff.

My insomnia is such that I'm getting only 4 to 5 hours of sleep a night. Only the nights I take sleeping pills do I get eight to 12 hours or more. But I'm wading thought jello for the next day. I know the lack of sleep wreaks havoc with my brain chemistry, but what do I do?

I try to believe I'm maintaining a brave face and trying to provide steadfast support for my family but in some ways I’m not. Being 600 kilometers from my wife and daughter and getting only 46 hours total with them per weekend has been rusting me from the inside.

The sad thing is that rather than pull together, it feels like we're unraveling. I'm not sure what will mend us.

I took two sleeping pills last night and felt a lot better this morning. As I pulled Pace close to me this morning she pushed away. After yesterday's meltdown she's not ready for that level of intimacy. Then Pace feels that I am going out the door all sad and suicidal; ready to die in a single car accident. It's an odd projection. I’m sad yes but suicide is out of the question.

I am wondering what I have to do to make our 12 year marriage and 15 year relationship together survive. "If I can’t deal with the pressure for a year, for her, what kind of husband am I?"

The short answer is, just a man dealing with a plate filled to overflowing.

Preparing for Surgery with Healing Supplements

When someone you love has cancer there's always someone trying to sell you something that may help. I do believe that supplements can be a good thing.

It seems as if the only evidence these "Internet Doctors" offer is either anecdotal or it is contained in the book that is available for $39

However, he does give the pre-surgery supplement recipe.

When there are not enough white blood cells

Normal levels of white blood cells are a number between a low of 4 and a high of 11. You can see how Pace's white blood cells took a hit at the start of treatment with abraxane. They recovered somewhat but not enough to get back to normal. Then, once the FEC treatments started to build up toxicity, Pace's white cells plumited below 4 and have remained there since.

White blood cells help your body to fight infections. When there are not enough white cells in the blood serum it's easier to get infections. Special precautions should be made to avoid infections when your white blood cell count is low.

Most every cancer patient carries with them a little book that carries information on their bloodwork and treatment. When blood is tested before a chemotherapy threatment, the nurse ususlly fill out another page in the little book.

We are what we eat

John Verrall, a member of a government advisory committee, in Britain has defied an attempt to keep him from talking about his concerns on a potential link of cattle growth hormones to beast and prostrate cancer.

He noted the rate of breast cancer among women in the U.S. is 97 per 100,000. In Europe the rate is 67 per 100,000. Thats' a 31% differential.

Verrall's advisory echos that of Boston researcher Carlos Sonnenschein, from Tufts University School of Medicine. He said that hormone residues appear to be the most likely cause of the onset of early puberty in young girls in recent decades.

While this blog focuses on breast cancer. The rate of prostate cancer in men in the U.S. is 96 per 100,000 but only 37 per 100,000 in Europe, according to Verral. A 61% difference in prostrate cancer rates of America over Europe! Kinda makes me wonder about the t-bones on the bbq.

My Dad fought prostrate cancer, he is now 76 and healthy.

Alarm over beef link to breast cancer

A Delicate Chemical Balance

We had a great long weekend. The sun shone and it was a beautiful summer weekend in Quebec.

Sylvie and Pierre gave us the keys to the pool. Between God, exercise writing and memories like going swimming with Vianne and Pace on a sunny afternoon help give me the strength I need.
Pace was going on strong. She is not going to look weak if she can. She can sleep for 12 to 16 hours a day but when she's up, she's up!

We got to the train about 10 minutes before I had to go. The chemical equation had unbalanced. Pace was white as a sheet. Her lipstick looked dark even though it was flesh tone. "I don't have my pills" she said as she took off for the bathroom. She made it back for a couple of minutes to get me on the train and then disappeared to the car. I knew there was going to be a few nausea stops on the 30 minute trip from Dorval to Oka.

Pierre and Vianne waved me off. Vianne loves the "choo-choos, just like her Papa. I know Lucienne Fortier is up in heaven smiling and reminiscing as her great grand daughter and grandson thrill in the momentum of the train rolling by. Watching my family disappear from the window is bittersweet, but it brings smiles to everyone’s face.

When I got home Pace and I traded messages; they stopped 4 times on the way back to "la maison." Once she got to her pills the delicate physiological chemical balance was re-established, once again life is as rosy as it gets these days.