Surgery Recovery , Day 1

As we said our prayers before going to bed last night the wee one told me “le bo-bo à Maman est allé au ciel.” (Maman’s illness has gone to heaven, or the sky)


The wee one was up at 7:30 this morning so I was up too, but only half awake. I called the nurse to ask about Pace. The nurse said that she had a good night considering the pain she’s in. However she had a reaction to the morphine and so they had changed to a different injectable pain killer.

When I talked to her Pace about 10:30 was feeling lonely wanted me to come immediately to the hospital to be with her, and I was not in a position to help her out. The wee one knew something is up, and hung on me as if I’d disappear if she let go.

About noon I tried to get her to the babysitter. Oh my goodness, my daughter is a drama queen! The tears and the screaming “Popa nooooooooo, I want to be with youuuuuu! I want to see Maman?!” Then Pierre called, he’s Pace’s Mom’s boyfriend, and we made arrangements for him to drop off Francine, visit with Pace then come trade places for the babysitting the wee one. He got here at 3:00.

Traffic was brutal. It took over 2 hours for a trip that’s usually max 30 minutes.

As I walked into Pace’s room she seemed immediately relieved. Turns out she knew when I had left Oka and was concerned something had happened to me. She was anxious enough that the nurse gave her a pill to calm her down.

Suffice it to say Pace is feeling a little fragile at the moment.

I kissed the 8 points of her face, rubbed her peach fuzz, buzz cut and held her hand. It was a brief yet emotionally deep moment for the both of us.

She told me that they have switched pain killers again, this time to something ingestible. The fragile state of her veins as a result of the chemotherapy is reducing the therapeutic options for her recovery. Most importantly she is sleeping, that’s the best medicine for healing.

Pace asked me to thank all of you for the positive energy and prayers that everyone sent her way. One measure of life’s wealth is friendship and the empathy of others; in that respect, by the grace of all of you, we feel like multi-millionaires.

2 short nights, 2 long days: Getting to the operation

Wednesday August 16
about 4:00 am finally get to sleep
9:30 am arrive at work
5:30 pm leave work to drive to Montréal
7:00 pm pull over at the Trenton Rest Stop for a nap; I was ready to sleep at the wheel
8:30 pm wake up and drive off again
10:30 pm I had to pull off the road, to make a couple of calls stretch and look at the stars, I could see the Milky Way, big dipper little dipper, Pegasus (and Sagetarius I think)
10:32 pm a shooting star lights up the sky, I made a wish

Thursday August 17
1:30 am arrive in Oka
5:50 am alarm sounds, in a fog I hit the snooze button, Pace doesn't get up either
6:30 am: lots of running around and expletives
7:30 am: Rush Hour Traffic Jam
7:45 am: We arrive at the hospital
11:00 am: I kiss Pace goodbye as she goes to surgery
11:30 am: Surgery starts
12:30 pm: I nap in the car
3:00 pm: I get the room number and move Pace's stuff in
5:45 pm: Surgery ends 6.25 hours later
5:45 pm - 9:00pm: I hang out in the hospital room waiting for Pace or the Doctor
9:00 pm: The nurse tells me all is well and the operation was conducted as planned
9:15 pm: I have to leave to pick up the wee one from the baby sitter
11:00 pm: I call the nurses station and they tell me she is in a lot of pain but on a morphine drip and sleeping
Sometime after 11:00pm I fall into a deep sleep.

I'm thankful that we are into the second stage of healing!

Notes on tomorrow's operation

We've got confirmation that Pace is the first patient tomorrow for surgery. So hopefully as of this time tomorrow Pace will have completed the second leg of the cancer triathlon. (Chemotherapy, Surgery, Radiotherapy).

She'll be Hôtel Dieu in Montréal.

I drive up tonight after work, we get to the hospital for 7:00am she should be on the table by 10:00 at the latest and then it's a four hour proceedure. Dr. Rami will be performing a double mascetomy and stripping out the lymph nodes on her right side. Then Dr. George steps in and will perform stage one of the breast reconstruction.

Please say a special prayer for Pace tonight.

Breast Reconstruction

Breast Reconstruction is what they call the cosmetic surgery following a masectomy. Many women want the proceedure as breasts are a definition of femininity. Our culture is breast obsessed, albeit in a dysfunctional and twisted way. For some it's not polite or considerate to breast feed in public, while breasts, partly concealed in a little black dress is considered chic.

When Pace asked me what I thought about the reconstruction, I suggested that maybe she go for one size bigger and get a "C" cup. (Note to the guys, if your girl asks this question, she proably doesn't want an answer.) Her retort can only be catagorized as quid-pro-quo.

Dr. Rami said that 100% of the husbands say the same thing and that given her frame and mass, Pace's breasts we already on the large size. plus they have to remove some skin and the nipples in the operation so "going big" is not recommended.

Sigh...

Sunday July 24th 1988

As I was winding down for sleep last night I picked up one of my old journals, it's a black leather, blue paper, 8.5"x5.5" and embossed with golden initials of my Grandfather and I. In a finger of God moment, the notebook the fell open to this entry.

July 24, 1988

I watched my namesake dying today
And saw the pain he pays in spades
cloud over his tired, sky blue eyes.

Frustrated with one way communication
and gesturing for the things he needs
All he can do is listen and nod
To my emotionally strained monologue

He lies there holding my hands
Fading in and out of sedation
The man who never showed me weakness
Not wanting to let go of my hand

God the father, God the son and God the Holy Ghost
How does his pain fit into your plan?
When a man no longer has his pride
When he can not move
from his hosiptal bed to a chair unaided

When nurses cheerily suction blood
out from his thorat
Jokingly telling him to "pee in there"
And another nurse later
rummages the vacuum
through the hole in his throat
His eyes full of panic and tears of pain
She cleans up around the tube
He collapses back into his pillows
Sedated beyond the point required
He's the man I love, but he's not the same
I wonder how strange is his percieved world
What he feels and sees

Courage wells up from my soul
As I think of my strength and health
I wish I could find some dignity in this
But my prayers go unanswered
and my soul rings empty

My Grandfather died four days later.

An Eventful Montreal Turnaround

Couldn't sleep Thursday night, maybe 3 hours and work was a whirlwind of activity.
Got home, packed and ate to avoid rush hour, then drove to Montreal getting in about 1:30am.

Saturday was another busy one. Pace wasn't feeling well she's getting back pain and chalking it up to stress. Then there's the whole emotional experience of being back in Oka waiting for Surgery.

So the wee one and I went grocery shopping. Oh the joys of potty training, three separate trips to the toilet. She missed her nap and alternated back and for between laughing and acting out like a pint-sized Jeckyll and Hyde.

We spent a wonderful evening at Susan's. It was her annual bbq and she had originally shifted around the dates due to Pace's surgery. I caught up with a couple of old colleagues and spent time swimming with and chasing after Vianne. Susan suggested we crash there, which was a good idea considering we were seeing Pace's dad in the same area the next day. The wee one and I crashed at 10:00 (whatever happened to Bob the party machine?) Pace and Susan stayed up till 2:30. The wee one was up at 7:30 per usual. Ouch!

It was a little difficult to see Pace's dad. Tracheotomies weird me out and bring up bad memories. My Grandfather Keith never wanted medical heroic measures used to keep him alive. I still get visions of my once strong Grandfather confused, frustrated, angry as hell and unable to talk after my Dad and Aunt allowed the doctors to cut open his windpipe to keep him from choking to death. Seeing him in pain was stomach turning as the nurses vacuumed the red blood and, on the afternoon he died, brown masses of cells of something out of the hole in his throat. I elieve the tracheotomy took away his dignity and subsequently will to live.

Gilles, is 20 years younger than my Grandfather was. Although it was evident he is sick, he definately had his game face on. If not for the hole in his throat you'd think he was doing fine. Just the same way some people think that Pace is making a fashion statement with the bald/buzz-cut look.

As we were leaving the wee one gave him a kiss on both cheeks and sang her cheerful "buh-bye." His face lit up happiness. Once again the wee one leaves a wake of good humor.

I caught the 7:35 ferry and got back home at 1:00 am this morning. 7 o'clock came far too early.

News about Pace's Dad

We got a call today telling us that Pace's Dad has advanced throat cancer, he's only 63. He can't talk anymore because he required a tracheotomy. The cancer has gone into Metastasis. It's been found in his lungs and he's starting to have unexplained headaches; cancer spreading to the brain is fairly common and headaches are an indicator.

We'll be making the trip in a week to pay our respects. I don;t know what to say or do, Pace is getting it from all angles.

This last 12 months has been to quote Liz Windsor the "Annus horribilis" for Pace's family when it comes to cancer: her dad, her aunt, and her cousin.

Good times, longtime friends and looking to the future

This long weekend we were able to catch up with long time friends, Jackie and her family was in town from Vancouver and Liz from New York.

It was a great afternoon. We feel blessed to have friendships where months can go by between contact and things pick up again as if it was only yesterday we last got together.

The kids played together, we talked and laughed, it was a really good time.

Pace and I talked this morning and given our current circumstances we're both a bit envious of their stability. Its facile I know, and so much easier to look at our friends' greener grass.

We'll be finished most of this by the end of December and by that time we will be living a new chapter in our lives. 

Home for a rest

The only news we got was that we're looking at a delay for the surgery until the 17th of August. So Pace and the wee one came back to Toronto with me.

It's nice and also different to spend time together as a family. I can't say that finding a rythem again is a easy, but I'm glad to have my family back again!

Private vs. Public Health Care and $99,680.00

In the realm of American style health care, operations are revenue generating and are rarely cancelled, in our Canadian system operations are costs that need to be contained.

I am grateful that Pace benefits from the universality of Canadian Health Care. It cost $8,000.00 per treatment of Abraxane and $920.00 per treatment of FEC, totaling $99,680.00 for Pace's chemotherapy drugs alone.

How product managers at any oncological pharmaceutical companies expect the middle class to keep up with these kind of bills is beyond me.

Homeopathic Weapons In the Fight against Cancer

The medicinal properties of Phellinus linteus in treating illnesses have been well known in oriental medicine since ancient times. An old Korean saying states that if you are able to find a yellow lump that grows on a mulberry tree, then you can bring a dying person back to life.

Researchers based at the Boston University School of Medicine in the USA studied extracts of Phellinus linteus They tested its effects on prostate cancer cells and found that when it was combined with the common chemotherapy treatment doxorubicin it increased the number of prostate cancer cells killed by the drug.

I'd be interested in knowing if it had the same effect on Breast Cancer Cells. Phellinus linteus is available for purchase over the internet, albeit from Korea or Japan.

For more info...
Exotic Mushroom New Weapon In Cancer Fight - UK News Headlines

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.