Getting the News

It’s been months since we first received the news that my husband had cancer.  Up until now it was just too hard to relive those initial days but for the benefit of those who don’t know how it happened – here is our story.

It was Wednesday, June 25, 2014 when I took my husband to Emergency.  He’d been complaining of a sore back since the May long weekend.  He’d dug up my garden that weekend, using the good old fashioned shovel instead of borrowing his buddy’s rototiller.  He thought at the time that he may have pulled a muscle and by the beginning of June he had visited the family doctor who prescribed rest as the answer.  Through this time he continued to ride his bicycle to work, play tennis with his buddies and do all the normal things one does. However, on the evening of the 25th of June he was in significant pain, not only with his back, but he had started to experience a pain in his chest.  Although he didn’t want to go to Emergency, he knew something was wrong and allowed me to take him over.

Due to the fact that he was experiencing some pain in his chest we were processed through quite quickly.  They did some blood work and hooked him up to an ECG to monitor him.  After a couple of hours the ECG was removed and his numbers appeared to be okay.  The Emergency Room doctor was not satisfied with any of the results that had come back, he felt that there was definitely something at play here and asked my husband to stay overnight so he could arrange for a CT scan for first thing in the morning.  That settled, I left for the evening advising my husband that I would go to work in the morning and then swing by to pick him up around noon – if he needed me sooner to call me at work.

When I arrived at Emergency at noon on Thursday the Triage Nurse took me right back to my husband and asked me to wait for the doctor.  A little odd, but okay.  I asked my husband if he knew what was up and he stated he had no idea.  The doctor came in, this was a different doctor from the one who had admitted and dealt with my husband the night before.  He started off by telling us he had some difficult news for us.  He had the results of the CT scan and it showed that my husband’s pain in his back was attributed to his T10 and T11 which were deteriorating as a result of bone cancer.  There was also a lesion at T6, as well as some deterioration to his sternum.  After he told us this, the doctor paused.  In that brief lapse of time I remember my husband just looking at me.  We were shocked beyond words.  Finally he said to the doctor, “Well I didn’t see that coming.” A brief and flat statement.  However, that was not the end of the doctor patient conversation.

The doctor stated that unfortunately the CT scan also showed widespread lung cancer, both lungs.  The main tumour appeared to be located adjacent to my husband’s heart.  He stated that his observations were very preliminary that we needed to speak to our family doctor as well as an Oncologist.  The doctor stated that it appeared to be at least Stage 3 cancer.  Although the ER physician chatted through a few other things at this time we were no longer listening.  We were together but apart, both of us lost in our own thoughts.  When we left the hospital we went home and sat outside on the deck.  There were a few people to call, but first we had to do some strategizing.  We needed to figure out how much we could share with our family and friendsWe needed to see our family doctor to talk this thing throughWe needed to find out how cancer could get to stage 3 (although it turned out to be stage 4) without any real indicators.  We needed to find out what happens next.

This was our world from June 25 – 27, 2014.  Everything turned upside down and we weren’t ready for it.

Visit Pre-Chemo #4

We will take a lesson from Oblio and focus, focus, focus.

Oblio – the mighty hunter.  Every night we have a mouseacre in our backyard!

Yesterday was blood work and consultation with the Oncologist prior to chemotherapy scheduled for today.  This would be the fourth and final session in this treatment cycle.  We attended the clinic and had the blood work drawn and then waited to meet with the Oncologist.  Previously, after the third session of chemo, the Oncologist had reviewed a CT scan taken at that time and had given my husband very positive feedback but had identified a potential infection in his lungs.  Since that time, my husband had been for repeat CT scan to see if the pleural effusion in his lungs had cleared up as a result of the antibiotics he had been prescribed.

Again, yesterday’s results and discussion with the Oncologist remained quite positive.  The pleural effusion has not cleared up completely but has reduced slightly.  This led the Oncologist to believe that perhaps what was happening in my husband’s lungs was actually a reaction to the chemotherapy.  Based on that, and on the fact that my husband’s physical response after three sessions of chemo was likely to be optimal, we considered whether a fourth session would provide any benefit, or if in fact, it could present risk.

We were presented with two options.  First, my husband could have his fourth session of chemo as scheduled (today), after which they would enrol him in a maintenance program where he would get a small infusion of chemotherapy every three weeks.  The second option was that he could stand down from his chemo treatment, with no oncology treatments for two months. At the end of this period he would have a CT scan and blood work to determine the status of the cancer in his lungs/bones, and an appointment with Oncology.  With the first option he would remain immune-compromised, however, Oncology would have close scrutiny of the status of his disease.  With the second option he would be required to self-monitor and advise Oncology if anything was presenting that could show the disease was back in action prior to his two month appointment.   Needless to say, he elected to go with option two, and consequently he was able to have his picc line removed.

For us this is a slight reprieve.  We have an opportunity to make serious modifications to lifestyle and diet.  We have two months to continue to work towards improving my husband’s health.  My goal has always been to make him “that guy.”  The one the Oncologist will reference at the discussion table when considering what the optimal outcome is.  The guy that beats the odds or pushes the boundary just that much further.  Whether he will be that guy or not remains to be seen, however, we will explore all options and research thoroughly what is available.

Our first objective – switch to an alkaline diet.

The Conversation

Dark, cold and the weight of the world on your shoulders.

Dark, cold and the weight of the world on your shoulders.

I’ve come to realize that there are certain conversations that are almost universal for cancer patients.  Just like the emotional stages one goes through, shock, anger, denial, acceptance – there are conversations that support each of those stages that must be remarkably similar.  There is one conversation that we had repeatedly in the few months previous to this.  It’s basis stems from  a meeting we had in early July of this year.  It was our first meeting with the oncology radiologist and occurred right after my husband got his cancer diagnosis.

In his mind, my husband had gone from healthy to stage 4 lung/bone overnight.  When we met with the oncology radiologist we asked a number of questions which resulted in a prognosis which I have summarized.  It is not a verbatim summary, rather it is what we “heard” and may not be exactly what was “said.”  But remember this is not about the radiologist – so what we “heard” is all that matters.  In short the radiologist said something like this: ‘You have Stage 4 Cancer.  Your prognosis is three to six months.  You will never be cured.  You will never go into remission.  Our work will be palliative, to hopefully provide you with a greater degree of physical comfort during your remaining months.’  Nothing wrong with this, probably based on years of experience and observation as a Rad.  However, let’s spin this differently and put it into a simple perspective.  It’s like a tennis coach saying to a player just before the big match, ‘The player you are up against is stronger than you. You’re going to lose.  It may go three sets or four, but you will lose.  Just make the best of it and soon it will be over.’

As a result of that meeting with the oncology radiologist we, my husband and I, have repeatedly had one conversation in particular.  It is a conversation that I think could have been avoided if the “facts” were presented differently. The conversation was never the same, but in general here’s how it went:

Him: “I don’t know what this is all for.  Why am I doing this?  I’ll never be cured.  What’s the point?”

Me: “The point is you don’t know what lies ahead – the radiologist doesn’t know what lies ahead.  The radiologist doesn’t know you.  All the radiologist told you in that meeting was the general statistics on this particular type of cancer.”

Him: “But I will never go into remission, I will always have cancer.  I will never not be without cancer.”

Me: “True.  But lots of people live with disease their whole lives and are never without them.  People with HIV will always have HIV, diabetics will always have diabetes.  Amputees can never get their limbs back. You have cancer.  It needs to be controlled and can be.  What we need to do is focus on progression remission.”

The thing is, I don’t think we ever should have had to have this conversation, no one should have to have a conversation like this.  It is a waste of energy at a time when energy is in short supply.  I think that first meeting back in July, a meeting which is embedded in his brain, has taken on monumental proportions.

Definitely the patient needs to know that their prognosis is dire, but even then provide some hope.  Qualifiers such as “at the present”, “at this time”, “based on the existing indicators” suggest that the patient can have some influence on their situation.  I am not suggesting giving false hope – lord knows we had no hope when we left that initial meeting.  I believe that medical professionals should be able to offer their observations and informed opinions when asked, but how they present them is quite significant.  When we were querying what the goal was with the treatment there was no mention of progression remission – this is something I went out and found while researching cyberspace.  And yes, most Stage 4 patients are unlikely to achieve this – but still some do.  Hope, even a glimmer of it, can make a difference in the outlook and determination of a patient.

Whew – Not My Best Day

Today was one of those days in life that will stand out forever.  It was a life-changer and will have huge implications looking to the future.  I still have to work on sorting out my thoughts and getting my game together on how I need to proceed.  One thing that is for sure, that is that the friends and family that we make in life make such a difference to success and failure, to health and wellbeing.  I have been leaned on many times in my life, and never regretted it once.  It shows the regard and respect that others have for you that they would allow you into their trust and life in such a significant manner.  When I am ready, I will open my arms up for the embrace of my circle of friends and family and lean heavily on them.