Christmas Passed

Daphne the Christmas Pooch!

Daphne – All dressed up for the occasion.

So we are through part one of two for the holidays.  Christmas is now over and we have New Year’s to get through.  This new phase in our lives has meant some significant changes to how we “do” Christmas.  In years past we would go carolling up and down the street or get together with friend’s at our house, their house, it changed from year to year.  We’d have a nice Christmas Eve dinner – usually surf and turf, drink Bailey’s and watch The Christmas Story.  We go to bed late, and get up late the next day.  Christmas Day would be turkey with all the trimmings and generally people arriving throughout the day for appetizers, drinks, carol singing, dinner and later on games.  We’ve always been sure to take pictures and plenty of them.  This year was a much different affair.  We managed to do a bit of a drive around our city to look at the Xmas lights on Xmas Eve, my husband and I along with his sister, two of the kids and two couples that are dear friends of the family.  The next day we had more family, including our two grandchildren, stop by but it was for a few brief hours, no meals, no games, no drinks.  The only consistent thing from years past is that we took pictures, and lots of them.

My husband had a poor response to the Zometa infusion and it took him down for about 8 days.  Today, the 28th, is the first day he has had an appetite and been able to participate in conversation with the family.   It was just bad timing for the reaction to the Zometa, but it did make me realize that I had slipped a bit on my research on recommended treatments.  If I had read up on Zometa and chatted through the side effects with my husband prior to commencing the treatments I doubt he would have opted for it.  This is what WebMD states regarding Zometa Intravenous under Common Side Effects:

The following side effects are associated with Zometa intravenous:

Common side effects of Zometa intravenous:

  • Bone Pain –  Severe
  • Feeling Weak – Severe
  • High Blood Pressure – Severe
  • Low Amount of Magnesium in the Blood – Severe
  • Low Amount of Phosphate in the Blood –  Severe
  • Low Amount of Potassium in the Blood –  Severe
  • Trouble Breathing – Severe
  • Backache –  Less Severe
  • Chills –  Less Severe
  • Chronic Trouble Sleeping – Less Severe
  • Cough – Less Severe
  • Diarrhea – Less Severe
  • Dizzy –  Less Severe
  • Feel Like Throwing Up  – Less Severe
  • Fever – Less Severe
  • Fluid Retention in the Legs, Feet, Arms or Hand – Less Severe
  • Head Pain –  Less Severe
  • Incomplete or Infrequent Bowel Movements – Less Severe
  • Inflammation of Skin caused by an Allergy – Less Severe
  • Joint Pain –  Less Severe
  • Low Energy – Less Severe
  • Muscle Pain  – Less Severe
  • Throwing Up  –  Less Severe
  • Urinary Tract Infection –  Less Severe

Click on the link if you want to see the other side effects listed under Infrequent or Rare.  There is also a good site in the UK that I often refer to when looking up this type of information, Patient.co.uk.; it provides suggestions on how to deal with the side effects.

Back to our situation and nope, we definitely would have considered other holistic ways to enhance his bones rather than infuse them with a bisphosphonate.  There is plenty out there too – therapies like mind body healing, osteotapping, Tai Chi, Xi Sui Jing; a wide range of supplements and dietary supports.  We just need to get through New Year`s and then settle back into a routine where there is time to do the much needed research.

Halfway There

The good old days.

The good old days.

This day is almost in the books and we move on to tomorrow.  There is an ominous feeling that just doesn’t want to go away.  My husband reminded me that the last time he had a CT scan he got the worst news of his life.  Consequently, having this second CT scan does not generate a feel good sensation.  He’s quiet and preoccupied.  For him he views it almost as a lose-lose.  His reasoning: if it is working then he has to have more chemotherapy which knocks him out and makes him feel awful; if it isn’t working then he’s spent three months feeling lousy for nothing.  It’s hard to reach him and futile anyway.  This is his own private hell.  Nothing I say has any weight – because we don’t have the answer yet.

I truly do believe that the chemo has helped.  I also think that if he gets a good or at least decent report as a result of the CT scan his spirits will lift considerably.  Today is just a point in time and tomorrow will bring a whole new perspective.  We’ve had a large number of communications via phone and text from friends and family today, and I’ve shared every one with him.  There is a world of love around him and he knows it, it may not seem like he does, but he definitely knows it.

His sister’s surgery went well and we even had a chance to get a quick visit in with her.  She was in good spirits, a little drugged which made it quite funny.  It was good to see her and it took a large part of the worry away.  So on to our major hurdle for this week – finding out if we gained more quality time with a special guy.

Monday Looms

Sometimes it takes a while to stop even with the brakes on.

Sometimes it takes a while to stop even with the brakes on.

We have been remarkably preoccupied this week and the stress is beginning to show.  Monday of next week has taken on enormous proportions because it is a big day for us.  On Monday we have two separate events that will influence, impact, shape, change, and a dozen more verbs, the future of this family.

On Monday my sister-in-law, my husband’s only sibling, will be in our local hospital undergoing surgery to remove a cancerous growth.  Also on Monday, my husband will be at the same hospital having a CT Scan to determine how he is responding to his chemotherapy treatments.  Together these two events have become the sole focus of our energy.  The days can’t go fast enough until we are on the other side, until the surgery is over, the scan completed and the results are in.  Regardless of the outcome, I am sure that more chemotherapy is in the future – which is a whole lot more palatable for my husband if it is working versus not.  For my sister-in-law the indication is that chemotherapy will be a prescribed treatment – let’s hope that the surgery is successful and the chemo required is minimal.

Even though worrying accomplishes nothing I find that all I do is wonder about what Monday will bring.  For my husband the CT Scan will have one of four outcomes: 1) the cancer has shrunk; 2) the cancer has stopped growing; 3) the cancer is still growing but has slowed its growth; and 4) the cancer is still aggressively growing.  I spoke with our GP today and she wanted me to recognize that 1, 2 and 3 were all wins.  Number 3 she likened to a car putting on the brakes, so she wanted me to see it for what it was – a good outcome.  Whatever the outcome is, we will deal with it.

For my sister-in-law the surgeon needs to get in there and remove the tumor.  Once they operate they can better assess what is going on.  Optimally they are able to remove the tumor and there are no surprises in the depth of it (which is the unknown variable).  During surgery the doctor will also be able to assess the proximate lymph nodes to ensure they are healthy and robust.  So the results and findings of the surgery will determine the treatment path she is assigned.

For me – I am a little distracted and worried – just like the rest of the family.  Monday looms large and there’s not a darn thing we can do about it.

Today Was a Decent Day

The title of this painting is "The Musicians".   With all that chemo splashing around in his veins, it will be interesting to see what his next painting looks like!

The title of this painting is “The Musicians”.
With all that chemo splashing around in his veins, it will be interesting to see what his next painting looks like!

For the first time in weeks it seems, today was a decent day.  It started off a little rocky, there was some nausea, but as the day progressed my husband started to visibly improve.  He knew that today had to be heavy on the proteins.  The chemo has gone through him and wiped out all his blood cells so he needs the protein to rebuild.  The toxins from the chemotherapy also still need to be flushed out – so a day that would also be heavy on fluid intake.  He was game.  By mid afternoon he was starting to perk up.  This was a good thing.  His taste buds are still off – at dinner tonight he informed me that most of the food I served him was a little “off” but since it didn’t seem to bother me, he ate the food anyway.  This was quite funny really – the two big culprits were white rice and water.

He’s busy painting a submission for an art exhibition right now – which is another good thing.  We’ve rigged up an arrangement where he can keep his left leg elevated in deference to his blood clot and still paint at an easel.  The clot is still very apparent and his leg is still very swollen.  By the end of the day his foot is smooth and shiny and his ankle is completely puffed up.  Despite the swelling the pain has begun to subside which suggests he is well on the way to recovery.  Not out of the woods completely but hopefully close.

There’s always a hitch though.  On the 20th of this month he goes for a CT scan.  There are three potential outcomes: 1) the chemotherapy is not working; 2) the chemotherapy has managed to stop the progression of the cancer, and 3) the chemotherapy has managed to reduce the presence of some of the existing cancer.   He told me tonight that the chemotherapy has taken a significant toll on him physically and mentally and that, depending on the outcome of the CT scan, he has decided that he may take a break from the treatment.   I know that when he starts to feel better, like he is now, he’s loath to go back in for another treatment.   It’s important that he have a sense of control in his own wellbeing, and also the knowledge that he can and will feel better.  There will be much more conversation in this regard prior to the 20th but for now there will be no more dialogue on this topic – decisions will be made after we get the CT scan results.

The sun shone today in more ways than one.

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.