When Do We Catch the EBUS ?

It's been a while since the last update and perhaps it's because this whole process is exhausting.  Not in the sense that a little extra sleep will cure but more from the pit of your stomach anxiousness that has become part of our everyday new life.

In the first few seconds when you wake up in the morning (if you have had the good fortune of sleeping through the night) there is no cancer.  The day is full of possibility and the world is your oyster.

One minute later it creeps up from under your bed, where all boogymen hide, to give you a little pinch and bring you back to reality.  The reality that this process is E X H A U S T I N G ! 
Now I am beginning to wander.  Back to the reality that is, careening down this rabbit hole.

We met with Dr. S on Thursday.  He was positive, upbeat and razor sharp.  While still nothing is conclusive he is expediting the process to get some results.  During our meeting with him, once we had been through the history and many details of the diagnosis, surgery and CT scan; he said something that caught my attention.

Please understand that we are neophytes in this world of both the medical "system" (notwithstanding Jody being on the giving side as a nurse years ago) and the process of treating cancer.  So we don't know how long things take and the hoops that must be jumped.

Here's what he said,"when the head of Oncology ( at Sunnybrook ) asks you to see a patient, you make time in your schedule".  His current available booking dates start in February !

I can't tell you how good that was for Jody and I.  This all goes back to a special friend of the family who referred us to Dr. T in the first place.  When this all became VERY real on Sept.26th, (which feels like a century ago but really happened a second ago if you count your time in epochs) Dr. F in Edmonton spoke with Jody in a calm and reassuring way, then put us in touch with the best in the business.  Yes, the very best in the business.  As time goes on I hope to include these doctor's names in this blog because they and their support nurses are incredible and deserve praise, not anonimity.

Back to where I left off.

Meeting the EBUS Driver

Dr. S, in the middle end of the meeting, picked up his cell phone and called first the office of a thoracic surgeon regarding booking times, then the actual surgeon.  With a few brief words electronically zipping through a local cell tower Jody was set to see this surgeon this coming Tuesday.  While it is a consultation meeting, Dr. N. S is one of only two surgeons in Toronto that do endobronchial ultra sounds ( EBUS).  The other one is the originator of the process.  Very impressive. 

The process uses ultrasound to accurately locate the area in the lungs to take the biopsy.  As I understand it, in the past this was done blind.
Dr. S will be presenting Jody's case this Tuesday to his colleagues both on an educational basis and as a consultation, the same day we will be seeing this surgeon.
I have always thought the Jody was special so there is no reason why she shouldn't be treated the same during this traumatic mess of a situation :-) .

Here is Jody's original take on what we just went through.  We were referred to an appointment, to make an appointment to make another appointment to have a biopsy done by EBUS.  The special part is, that this all takes place within two weeks, phenomenal.  I left out her colourful use of the "F" word but some of you experienced it first hand either in text or email.

We find out if we get to board the EBUS on Tuesday.

Jody's Mom "A Force To Be Reckoned With"

During our meeting with Dr. S, Aunty Brenda made a wonderful understatement that needs to be acknowledged.  She said to the doctor she was Jody's surrogate parent ( to explain how she fit in).
Well, besides the fact that she and Mitch have been there with us every step of the way, it reminded me of what might have happened if Jody's Mom was still alive.  No disrespect to Aunty Brenda but I think she would agree that if Nancy was still in prime fighting shape watch out.
Nancy was a force to be reckoned with.  It makes me smile to think how ferociously she would have been part of this process.  For those who knew her, tell me if this wouldn't be a reasonable scenario.

Day one she'd be on her way down the 401 with bagels, a brisket and some special cream cheese that you can only get in Montreal.
Day two our house would be spinning around to make everything clean and right.
Day three the smell of chicken soup bubbling on the stove and cheese bagels warming in the oven.
First meeting with the doctor's she'd be charming, insistent and let you know how special Jody is (see previous posts).  Every relative in the extended family, including all contacts in Rosemere, would be updated to the nth degree and she would probably be instructing me on what to put into this blog.  And strange as that just felt when I typed that, she just may be (thanks Nanc). 
Perhaps she is the force that is helping me to "find my voice".
Now a special note to family members and "the street". I was tearing up on this as I entered it but there are strange forces swirling around in this universe that can not be explained.

More on "the street" in future posts.  And Tuesday is just around the corner.

Do something special with someone you love today.  Time is a cruel taskmaster and our allotment is never what we think it is.  To quote Joni Mitchell (one of Nancy's favourites)...
"don't it always seem to go that you don't know what you've got till it's gone".

The New Center of Our Universe

After a very wonderful, distracting weekend with friends and family we now appear to me moving forward at a glacial pace.  Glacial in the sense that if you looked at a map of Greenland 20 years ago then
re-examined it today; much has changed (speedy with a global warming sense of urgency).

Squeaky Wheel


Late Friday afternoon I had a rather tense phone exchange with Dr. T's nurse.  She had had a long day by the time we spoke. And I felt like there was a giant hour glass in front of me with a wicked witch bidding her time and rubbing her hands in glee.  Our time was running out but no one was getting back to me, so I exercised my new found skills (taught so lovingly to me by Jody) of being a squeaky wheel.

On Wednesday of last week I was sure I heard that we would be getting a call from the pulmanologist to schedule a biopsy.  If we were not contacted by Friday I should call Dr. T's office, so I did.
My first call was at 10:43 am, yes 10:43 that is the miracle of our smartphone age.  We always know when we made or received a call, text, or email.  This makes it either easy or hard to look back on situations like this.

The message left was simple.  It's Friday and we haven't heard about the biopsy so I am calling to let you know.  At 1:00 pm I was getting the feeling that I was in some kind of Franz Kafka book.  Look him up, he was part of my University life and from time to time he swirls around in my head.
I called the administrators office and left a message; then left message number two with Dr. T's nurse.  That was 1:02 pm.  For added measure I also left a message at 1:06 with the other nurse we had met on day one.  A little over kill but now you see where my psychological state had drifted.

As 3:30 rolled around I gave up on messaging the Odette Center folks and took to the directory to track down the biopsy doctor himself Dr. S.  Let me take a moment and put things in context.  I was envisioning further delays would occur if we did not get this scheduled immediately.

Here's what I heard on Dr. S's answering service..."this office is now closed through Nov. 21".
Yikes !  Should I have started with his office first?

The first "call back" came from the administrator at Dr. T's office at 3:45, assuring me that all was good and that scheduling would be taking place.  At 4:15 came the icy blast from Dr. T's nurse.  I will not share details but let's just say "terse" would fit the beginning, middle and end result of that conversation.  Since you only have my point of view ( and it is the right one :-) I certainly had her attention.  And briefly, in her defence, she did keep her cool.

So off into the wonderful weekend I went smouldering about how I may need a refresher course in squeaky wheel theory.  Yes the outcome was fine but my dismount was way off balance and I don't think I needed to add that 3.5 degree of difficulty with multiple phone calls.   I'll do better next time.  As I learned from Marx and Engels "the end justifies the means".

As you will see by the picture above I am spreading my technical wings.  While words can be fun, words and pictures double the fun.  This is the sight we see every time we arrive at the Odette Center.  Every time you are expected to check in at the main reception.  They notify everyone you are going to see that day, you are in the building.  Kind of like checking in for a flight but this one is headed to an entirely different land.

Welcome to the land of cancer treatment.

 Here is the latest update... 

The biopsy is scheduled for Thursday afternoon.  From this we will get a pathology report by November 30.  Until then we twist in the wind.  

Happy Thanksgiving to our US family and friends this Thursday. 

Lessons Learned

I told Jody I was thinking I should stop writing this blog. We talked late into the night and Jody said “you have to continue, no matter what comes next, for the sake of our children and their children”.  Well let’s just say I could now see the bottom of the rabbit hole.

I have read a lot of books and I am always fascinated by how the author can paint a word picture of stark emotional honesty. Maybe I had a naïve vision of how “this can’t be so hard, millions of writers do this every day”.  Well I think I need a moment of sober second thought.

Chronicling the ups and downs of our life as we go through this was, in my estimation, a great way to keep all who know and love Jody up to date on her progress.  Unfortunately there is one element of everyone’s life story we all try to ignore.  I know because that’s what I have been doing.  I don’t know if it was a comedian or some dialogue from a movie but this was the summary of life that got my attention, “no one gets out of this alive”.

I guess the hardest part of this experience is to accept that there are two outcomes.  One unspeakable; the other a celebration of beating the odds and living long enough to be a problem for our childrenJ.  I really like the sound of that last part.

Positive thoughts.  Positive outcome. Positive thoughts. Positive outcome. Postive thoughts...

This would be a very good time to change subjects and talk about “Jody the nurse”.  This always makes me think of our early days together.  See, now I am smiling again.

Many of you do not know Jody as a “rock star” nurse.  I use the term rock star in the current vernacular that describes people who are INCREDIBLE; head and shoulders above their contemporaries in their chosen profession.  Jody was that “rock star” nurse.  She graduated near the top of her class and was in the top 3 percentile in Canada on her board exams.  Her specialty was and still is pediatrics.  While she says she liked the challenge of diagnosing people that couldn’t tell her what was wrong, I think she is just a baby nut. 

She was fierce when it came to advocating for her patients and berating doctor’s who didn’t quite know their stuff.  She also still has an uncanny ability to diagnose illnesses.  Those who have experienced this will testify to that but I for one have seen every single time this has occurred.  Many people have said she should hang out a shingle, I agree wholeheartedly.

In her first job (Houston, Texas) she was held up at gunpoint on the ward by two thugs wanting the narcotics keys. It was Halloween and they were dressed in masks.  Jody laughed at them thinking it was some prank until one of the long time local nurses said “honey, that’s a real gun, better give them what they want”.  A week later two guys pulled guns on each other in her apartment.  They apparently were her roommate’s dates for the evening. If you are thinking you may want to relocate to Texas, think again.  It was time to leave Texas and move to Vancouver; that is where we began our life together.

Miracles Do Happen

Vancouver hospital was where all the most traumatic, life threatening pediatric cases in B.C. would go.  There were regular flights in Medivac planes which Jody went on from time to time.  One day their ward got a call from somewhere north of Williams Lake in the interior.  A woman had given birth prematurely at 23 weeks and several days.  The caller asked what they should do with the baby, it was breathing.  The response was “wrap it in a warm towel it should die shortly”.  It was born too early and all the scores and indications for survival were very poor. Seven days later there was a second call, the baby is still alive!  On the tenth day the Medivac plane took this baby down to Vancouver where the combined skills of Jody’s neonatal intensive care unit brought this child back to a point where she could go home after 6 months.  This was a true miracle.

Somewhere in this country there is a thirty year old girl that is a walking miracle.  To give some perspective I just Googled the current earliest survival record, it is 21 weeks and 5 days.

And here is a more recent story that gave Jody chills.

On a quiet afternoon in the early summer of this year Jody was buying some groceries at Battaglia’s on

Lorne Park Rd.

.  A young girl that worked there stopped her and asked if her name was Jody.  When she responded in the affirmative she said “I am alive today because of you”; stunning words to say the least.

Back in the days when Jody worked at Mount Sinai Hospital she was often “floated” to the emergency ward at Sick Kids.  On one particular day an 11 year old showed up and coded. She had a condition that Jody had seen many years ago in Vancouver.  When the doctor’s were saying it was time to give up Jody refused.  The girl’s father said it was like something out of a movie.  The girls was saved by her singular effort.

Rock star?  You better believe it.  Now I am getting chills typing this.

Now for a real moment of serendipity…yesterday before seeing the doctor a fourth year student came in.  One of his first comments was, “you look familiar”. Here’s the connection, his brother (age 30) spent a lot of time at Sick Kid’s Hospital when he was young and that was where he met Jody for the first time.

We humans are strange and wonderful beings, but I do digress…

So now we wait.  A biopsy will be done soon.  We will then have something very real to worry about or blast off into the world of chemotherapy (or both).  Staying positive has now become a full time job. 

Repeat after me, staying positive is a full time job.  Now write it on the blackboard 365 times.

One Step Forward Two Steps Back

Nov. 16, 2011 Pre-chemo day

SHIT !  No chemotherapy tomorrow.
Another kick in the stomach. 

Dr. T broke the bad news to us gently but it didn't really help.  Here's what I heard.  "The CT scan showed two small nodules in the lung area that appear symetrical but will require a biopsy to find out if they are breast cancer cells or something that could be treated with steriods while chemotherapy starts.  The biopsy will be sometime next week".

This news really hit us hard.  We were ready to go.  It took every ounce of emotional energy to be strong for Jody.  Again having Aunty Brenda with us was a godsend.

We were so prepared to get started but now we have to lean on something we've shared together since the day we met, things happen for a reason.  I don't know why this is so, it just is.

For all you romantics out there the day Jody and I met ( May 19, 1979 ) we both knew we had met our soulmate.  Now back in those days the saying "soulmate" was rarely used. Now it is used so often that there is a sense that the rare instance of really meeting your soulmate happens every day.  Perhaps we new each other in a previous life.  Perhaps we were inexorably linked by some kharmic energy field.  Either way meeting that day happened for a reason.

In our life together there have been so many examples of strange occurences that we have become card carrying members of the "kharma bank club".  Sometimes, like now, it's hard to believe there is a reason for what we are going through. 

For example on June 22nd this year, we decided it was time to sell our house and simplify our lives.  Downsizing, as most would call it, was part of our plans for a very long time.  We didn't need to sell, it just felt like the right time to take this step.  On July 4th Jody had an ultrasound and a magnified mammogram.  It was the inconclusive results of those tests followed by Jody's sense that something wasn't right which made her insist on a biopsy.  The purchase offer for our home of 17 years went through Aug. 12 while a sterotactic biopsy on Aug. 18 would confirm the breast cancer diagnosis.  Now, as all hell is breaking loose in our personal life, we are in a managable 3 bedroom townhouse a few kilometers away from our previous address.  We are still close to friends and familiar surroundings, all with the extra added measure of the amenities of condo living; no raking, cutting, shovelling, etc..  All of this allows us to face this terrible disease with relatively few distractions.
Things happen for a reason.

Special Technical Note
I took some pictures today at Sunnybrook but don't feel like including them in this post.  Okay, I also don't know how but I am sure it's easy.  We wanted to show: where we were spending our time; talk about the processes that run so smoothly at this hospital; and add cool pictures.  This all seemed like a good idea prior to the kick in the stomach.  I am sure I will feel a little more energized tomorrow or the next day.

Surrounded By Family And Friends

Nov. 5, 2011  Big Night

If you ever get the chance, watch the 1996 movie Big Night featuring Tony Shalhoub and Stanley Tucci.  It is a great “restaurant movie” filled with comedy and pathos; much like our evening at Sonia and Warren’s.  It started out as a “Girl’s Night” that was sangria centric.  About 10 to 12 ladies were expected to visit with Jody and eat the food prepared by me and Warren.  Paella was the main course and I came outfitted with my Superman T-shirt as inspiration for our Big Night.  With the inclusion of some out of town guests, Jody’s sister Lianne ( from South Carolina ), Brenda and Aileen ( Toronto and Sterling, Ontario) this evening was a little more special than usual.

As the night began more and more male family members showed up.  I considered this either a testament to the rich skills of the chef’s or the usual Geller event status that, “it can always get bigger”.  In fact it is this sense of inclusion that I have long marveled at during my life with Jody. 

Around my house when I was growing up it seemed that every big dinner or small family gathering always excluded either kids, cousins or certain extended family. Friends were persona non grata and if someone that lived on our street wandered by; they were probably selling Girl Guide cookies or chocolate bars to support their hockey team.

By contrast a “Geller occasion” often includes Aunt’s, Uncles, cousins, Montcalm street members, long time friends and even family members of other families that feel at home and included.  Jody and her family have taught me about inclusion.  We are all richer when we can exchange ideas, laughter and sadness together.  In fact the more diverse the backgrounds the richer is the experience.  This is the Geller dinner table.  Mostly a legacy from Bubby Jean but certainly carried on by all her children.  Just say the words Skootamatta, Rosemere or

Smart Avenue

and all who have been there know this inclusion and acceptance. 

This tradition continues tonight on

Grey Avenue

.

The paella was a big hit with the “sangria set” while the men folk “chowed down” on steak.

There was one rather poignant moment during the night for Jody.  She was speaking with one of ladies about the early parts of discovering her lump and thus the cancer.  As Jody will, she lovingly instructed this person to be more proactive during her regular mammograms and pursue any irregularities despite what a doctor may advise is “probably just a cyst or fatty tissue”.  As she finished her listener began to cry.  She had not been for a mammogram in a very long time and seemed to have put her health on the back burner while tending to family things and everyday life.

Public Service Announcement ( PSA )

Jody wants everyone reading this to promise “today” to make a doctor’s appointment and get screened and have regular checkups for all of the many preventable conditions that exist today.  Ignorance is not bliss; it is merely an opportunity for problems to get bigger than they should.  Besides both Jody and I want you in our lives for a VERY long time.

End of PSA, thanks for your prompt attention.

November 14, 2011 Chemotherapy School

Today we graduated a course no one should ever have to take for a reason no one should be faced with.  The Odette Cancer Center runs a very good orientation program.  All the questions were answered regarding who, what, when and where but I for one felt a little queasy.  Once again Aunty Brenda was on hand to keep us on a level keel.

So the world of chemotherapy now waits on our door step; full of new vocabulary and scary references.  Starting with alopecia and ending with diarrhea this is not my idea of a gentle walk in the park.  How do people do this alone?

Tomorrow we set out to buy a new thermometer, a good one.  Infection is a common side effect and 38 degrees is the balance point, at 38.5 get to the emergency room without delay.  Mucositis sounds delightful; we picked up some baking soda tonight to ward off its symptoms (you don’t want to know).  Then there is the wonderful juxtaposition of constipation and diarrhea.  Both were covered in detail so I guess the result is a bit of a crap shoot (punning is intended for an older audience so I apologize to generations X and Y in that order).

Now this whole cancer shit gets very real.  Blood tests and a visit with Dr. T are this Wednesday and Thursday chemotherapy begins.  The clinic uses the short form “CX” on the appointment card to denote chemotherapy. I don’t like the use of the X in that abbreviation but can’t really suggest a better alternative.

The next treatment is scheduled for Dec. 8 if all goes as planned.

They suggest that you set aside the entire day for the first chemotherapy, maybe you'll get out early but just in case set your expectations low.  What a lovely beginning.

As of today chemotherapy is just a word.  We can still dream that this will be the easiest course of chemo in the history of mankinds effort to poison cancer cells.  No side effects, no vomiting just effective destruction of cancer cells all according to schedule and with perfect results. 

This must be the freefall part of falling down the rabbit hole.  The breeze blowing by us.  A feeling of weightlessness and bliss surrounds us for now.  Jody is the healthiest she has been since the surgery.  The need for pain pills has completely dimished and she was able to get back to yoga for the first time today. Our family and friends have been slowing our progress as we cascade along our way.  This is such a comfort to both of us.  You have no idea what your support means to us.

When I look down the rabbit hole I don't see any bottom in sight.  Maybe it's time for some glasses ?

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.