Where To Begin ? September 2, 2011

(last names have been omitted and Dr.’s will be referenced by letters both for privacy and the fact that those family and friends reading this know who we are.  For others we expect that you are here as a participant in your own version of a journey “down the rabbit hole”.)

 

Sometimes it is better not to know what’s coming next.  Let’s take Sept. 2^nd, 2011 as an example.

Before Sept. 2^nd two different doctors told us that Jody’s mammogram and ultrasound results seemed to point towards either a cyst or some other tissue.  “Don’t be concerned let’s wait for the biopsy results”. 

Fast forward to Dr. G’s office and the results of the biopsy; it didn’t help that he thought we had already met with our GP to hear the news.

Here are the last few words I remember as we stood on the edge of the rabbit hole J

“okay, so here’s what we are going to do to deal with these cancer cells………….”.

That’s all I heard the rest is a little foggy.  I turned to Jody and she was just staring straight ahead at him in disbelief.  I think I now have a very clear understanding of the true definition of SHOCK.  Yes the clinical version; like when part of your arm is cut off and you look down and see it lying beside you and you think, that’s a little odd my watch is attached to that arm on the floor ……

Now it’s Dr. G’s turn for complete surprise.  He thought we already knew.  Surely our GP was in touch with us and as a surgeon he was just outlining his part in the search for cancer cells.  Suddenly he realizes he’s the one that pushed us off the edge.  There we were looking up at him as we fell in shock and dismay while he looks back in shock and dismay.

That’s how it all began; Jody and Peter’s journey into the world of breast cancer.

This blog is meant to keep our very concerned family and friends up to date on where she and we are at.  Because of the fact that many family and friends are in and around the medical world, future segments will be titled “JUST THE FACTS” for those not in the world feel free to skip through.  This also is very much the spousal point of view, more cathartic than relevant to the final outcome.  Jody will do the heavy lifting on that account.

On Sept. 26^th ,one of the longest days in our life, we entered the Oakville Hospital for a “simple lumpectomy” which included a sentinel node biopsy as well*.

*Just The Facts

A small lump was discovered on the upper end of the right breast.  By external feel it did not seem to have the characteristics of cancer cells but the original biopsy proved cancerous.  The investigation of the sentinel nodes is a procedure to determine if the cancer cells have spread into the lymph nodes.  A dye was inserted (very painfully) into the breast area prior to surgery as a tracking device.

Simon and Danielle arrived at the hospital just prior to surgery and had a brief visit with Jody.  They helped distract me by joining me for lunch at the local Licks Restaurant.  We should have taken the hint and moved on when we found hardly anyone in the restaurant in the middle of lunch time but we were too distracted.  The food was horrible and nowhere near the level of quality I have received at previous Lick’s locations, so it goes.

While we waited and ate we heard from both Matt and Jacob.  They were on their way over.  Once we were all in the waiting room Brenda joined us and she brought a special kind of calm to this situation.

The start of surgery was delayed by about 45 minutes and was then expected to take about 8o minutes.  So by my simple math this whole thing, including delays should be done no later than 2 pm.  With all of us in the waiting room it wasn’t looking good that it was now 3 pm.

I am not sure if I have ever really truly felt that sinking feeling.  You know the one that you get when bad news is coming or you are part of a bad accident and have to explain why things happened the way they did.

Around 3:15 pm I saw the image of Dr. G motioning to me from the waiting room door to join him out in the hall.  That wasn’t unusual as most of the other doctors arriving earlier did the exact same thing.  It was the first words out of his mouth that made me feel my head bump on the side of the rabbit hole…”well things didn’t go exactly as we planned…”.

You will remember my earlier description of shock.  I think this was worse because I didn’t have Jody to look over to.  Instead I am certain the doctor continued to tell me relevant things, I just wasn’t hearing them.  It seemed like an eternity but I gathered up the presence of mind to stop the doctor from going on and asked if I could include Jody’s Aunt in the conversation.  At that moment I felt the calming presence that is Aunty Brenda.  She stepped in and stepped up to be my eyes, ears and thoughts in gathering up what the doctor was trying to communicate.*

 

*Just the Facts

A small incision was made on the upper part of the breast and the tumor was removed with a bigger margin than originally planned.  This was the result of a discovery that cancerous cells were showing up in the lymph nodes highlighted by the radioactive dye injected (very painfully) earlier in the day.  At the same time 19 lymph nodes were taken out.  This required an incision in the armpit about 3 inches long. A small camera was inserted so that an oncologist at Credit Valley Hospital in Mississauga could simultaneously view what Dr. G was seeing.  The more aggressive approach was partially decided upon based on what these two male Dr.’s would have done if this were their spouse.  For that both Jody and I are thankful.

When this all began back on Sept. 2 we thought there would be some radiation treatments, plenty of back and forth with oncologists and that we may not have to tell anyone about this.  This would now not be easy with the very high certainty of chemotherapy. It was time to tell the family.  Now anyone who knows Jody really well will understand this part of her tale.  She was devastated that she was going to be causing all this worry, concern and fuss to her family and friends. Not whoa is me or why me?  Look at all the trouble “I” will be causing.

In this world there are givers and takers.  In my experience everyone operates on a scale of 1 to 5.  For example a taker at the 4 or 5 levels ask for and expects everything with little concern for how that looks or whether it is “fair”; they are about themselves first before others.  But a giver, in the same range, thinks first about others.  Giving advice, money, time whatever it takes to be helpful to family and friends.  Most everyone operates right in the middle of the scale, Jody on the other hand is off the chart on the giving side of the equation.  I have watched in stunned admiration as she has done things to protect her family, assist friends and generally do good, in more ways than I could have ever imagined.  It is this quality that I love about her.  And it is this quality that is now biting into her more than this crappy disease.  Imagine that?

The last thing she wants is to concern or scare her precious nieces and nephews.  The same thing goes for her siblings, their spouses and me.  I have already spent enough time crying about this anguish for Jode.  But of all the people she did not want to tell it was her dad.  As she put it “he’s been through enough anguish in the past 4 or 5 years, he doesn’t need this”.  Like I said she is special in so many ways.

Well the calls were mostly made on Sept. 26; the first to Jody’s father then on to siblings, Aunt’s and Uncles.  To say the least it was painful.  The number one caregiver was now the patient.  Turns out nurses do not make good patients.  Complicate that with a nurse who feels “guilty” for being sick and you have a real mess.  Did I mention Jody is an ex-nurse?

The day after Jody’s surgery was a personal nightmare.  We had moved 3 or 4 kilometers from our old home in Mississauga.  During our 28 years in Mississauga we had the same telephone number.  We were now moving out of that exchange area and we could not keep our old number.  It sounded ridiculous the first time we heard that too.

The previous week a Bell technician came by but only installed one line, we needed two.  Apparently there was some confusion on the first set of orders that required this return visit.

After several phone calls and requests the technician was coming back on Sept. 27^th.  The time frame given was in the morning between 9 and noon.  Jody was not expected to be discharged until the afternoon so all was good.  At 1:07 pm the technician called to say he would be there in 15 minutes because he was delayed on another job.  He even told me he was the original guy who did the first installation.  At 2 pm Jody called to tell me it wouldn’t be long maybe an hour or two before she was “outta there”.

By 3:30 I was stressed to the max.  The Bell technician was a “no show” and Jody was minutes away from needing a ride.  I tacked a note on the door and left.  He never did show up.  Never even called one more time to say he’d been in an accident, his pet dog had died or his alien abduction was completed ahead of schedule…

October 12, 2011

We went to a great birthday party for Carol hosted by Gail and Glen last night.  Our outlook was very positive going into our meeting today with Dr. G about the results of the pathology from the surgery.  No foreboding, no dread, no fear, just positive feelings as we waited in the aptly named waiting room.

We are not sure if it’s his office, Dr. G himself or some other random karmic constellation but he opened his mouth and gave us another kick in the stomach.  Not literally of course, just more bad news.*

*Just the Facts

The good news first, the margins around the tumor were clear, so no more new surgery required for now.  The bad news, 18 of 19 lymph nodes tested positive.  Chemotherapy was now certain and the next phase of investigation would involve searching for cancer cells in the body and doing an ultrasound on the liver.

We drove home in dismay.  I was supposed to go to a business function that night but did not think I would be able to pull off a cheery disposition.  I called to cancel out.

Jody told her friend D she would not be able to make their scheduled dinner party the next evening.  Strike that, Jody got me to call Diane and cancel.  This has become my new role; call screener, plan decliner and situation updater.  It is for this reason that this blog was created.

With great relief Jody decided to go to D’s dinner party and had a great time.  Her friends mean so much to her.  Their support has been amazing and this is only the beginning.

Psychological Update

It appears that most people (couples) going through the cancer process are strapped into a psychological roller coaster but are never told about it.  It’s like a roller coaster in the dark (the one at Disney World, Space Mountain). Try it out if you get a chance; the roller coaster not the cancer coaster J .

Jody has had some laughable shining peaks with some dark dread hopeless views into the abyss.  We have shared the laughs but I don’t recall sharing so many moments of crying and silence in more than 32 years together.  Perhaps we are just a very strange couple.  I do not say this lightly but when Jody was diagnosed I felt it was my diagnosis as well. 
If you don’t believe me, ask Jody.

So psychologically we are a great big blubbering mess, thanks for asking.  Talking positive, upbeat then sliding down into the abyss of “what if’s” “shoulda done’s” and what’ll happen next?”

The only certainty we have is uncertainty!

The following questions belong to both of us in our worst nightmares but I suspect everyone reading these identifies in some manner with them.

Will I be there to see my grandchildren?  Who will take care of Matt, Simon, Jacob and mostly Peter?  Will my passing be too much for my dad?  Will I be remembered?  Will I ever be just Jody not the Jody with cancer?  Is there more surgery to come?  The pain is bad now will it be worse in the future?  Chemotherapy scares the shit out of me, will it work?  Will it change my personality?

There were more questions but please remember this is before we have met the oncologists', more to come.

Oct. 28, 2011

It is now 5 days before we meet with the oncologists at the Odette Center, Sunnybrook Hospital.  The two tests that Jode was supposed to get done bounced all over the place but never did get scheduled.  It was time for Jody to make some calls and get this done.  The people at Clarkson Radiology were very helpful.  They scheduled the liver ultra sound for Friday morning Oct.28 and introduced her to a clinic at Six Points that does body scans.  This will be done Halloween morning (trick or treat J).  The end result is the reports for these should be in the oncologist’s hands before our meeting.  One of the most valuable lessons I have learned from Jody is the art of being a tactful “squeaky wheel”.  The results always speak for themselves.

Nov. 3, 2011

The Odette Cancer Center at Sunnybrook Hospital

Today we make the acquaintance of Sunnybrook Hospital.  We have been recommended to Dr. S and Dr. T.  We are joined in this meeting today by Mitch, Brenda, Larry and Rob.  Quite the entourage and gratefully I will publicly say since the meeting was a lot more than we could have handled on our own.

Interesting side story…as we drove home after Jody commented on seeing some people there alone.  The volunteers were asking if they could sit in with these solo folks and help by taking notes.  Jody was very moved by these people.  And yes it was clear that if she had a little spare time she would have sat in with them after going through our experience.

Yes our experience was interesting.

The first big issue to over come was our concern for completely losing our composure in front of our entourage.  Though we know they all meant well and were very supportive the dread of collapsing into big blubbering messes in front of them was very real.

We even considered meeting on our own first with the oncology team, then having everyone else join us to hear the story all over again.  It was this possibility of having to hear the story twice (and imagining it would not be good news considering our track record so far) that convinced Jody to just do this once with all in attendance.

This experience was very gentle and kudos to the Odette Center for their process.  After registering we were put into a many chaired waiting or holding area.  On a white board were the names of the Dr’s working that day, the number of patients they were seeing and the patient appointment time they were on.  A very nice touch that made us feel that things were moving along promptly.  Once we were called they settled us into a very spacious windowed examination room.  Chairs were available for all and we immediately met the nurse that was taking the history.  Lauran was great, in fact she kind or reminded me of Nurse Jody (many of you don’t know Jody as a nurse but she was awesome in that role).  Perhaps I will tell some stories about Nurse Jody later.

Dr. S the radiation oncologist was kind and gentle but clearly wanted us to know that her part would be played further down the road post chemotherapy.  Instead it was Dr. D who preceded Dr. T , that shared good news for a change.*

*Just The Facts

I have no great knowledge of breast cancer cells but I suspect my knowledge is now about to grow.  While those in the medical world may disagree I get the impression that they are divided into two categories; "beatable cells" and "we are in for some very big problems cells".  The cells we are dealing with are the beatable kind.  Still it is a very aggressive cancer that will require very aggressive chemotherapy and radiation.  The chemotherapy treatment is called FEC-D (Fluorouracil, Epirubicin and Cyclophosphamide, then Docetaxel).  The treatment is given on a single day, every 21 days 6 times.  Some or total hair loss generally starts 2 to 3 weeks after the first treatment.  There is a list 3 pages long of “common side effects”.  I have read it twice and feel nauseous just reading them.

Nov. 4, 2011 Hanging On To The Positive

The very next day we are on the road to Montreal with a lot of time to talk and mull over the days ahead.  During phone calls, immediately after we got home last night, I began to describe this as a beatable cancer.  You really do grasp at every positive you can on this journey.

There was a noticeable exhale of relief from all the members of our entourage as we left the hospital.  I don't know if it's self assurance or expertise but Dr. T gave us all this sense that we can win this fight.  She showed up with silver running shoes, sparkling nail polish and a distinct air of both calm and determination.  She looked Jody in the eye and stuck to the facts and details.  No sugar coating but with plenty of examples of success with other patients in the same condition.  It is funny how we have latched on to every positive word, phrase and feeling during our visit at Sunnybrook.