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The Travellers aren't going anywhere too fast.  The snow just keeps coming!

The Travellers aren’t going anywhere too fast. The snow just keeps coming!

A few things have happened in the last week that have had some impact on our circumstances.  First and foremost, my sister-in-law has been taken off of her chemotherapy treatment.  She has had a series of issues with her ileostomy that appear to be aggravated by the chemo she was on.  As a result, at her last meeting with the Oncologist, he made the decision to stop her chemotherapy until her stoma has had a chance to heal.  She had her picc line removed as well, since the Oncologist believes that it is unlikely that she will be able to commence this type of treatment again.  There are other options for her, but until her stoma heals he is reluctant to put her through anything more.  It’s somewhat bittersweet – there’s relief that the chemo has stopped, but it is likely short-lived and, as well, there is the ongoing fear of the potential for the disease to return.  So although it was nice for her to not have to endure the physical pain and associated issues with her treatment, there is still a need for treatment and this reprieve is likely a short one.  At present it is a “wait-and-see” approach.  She’s still tired and has limited energy but at least now she can focus her energies on healing.

As for my husband, his cervical spine has been very painful and is draining all his physical energy.  He hates taking pain killers because they make him feel dopey but it is better than being in agony.  Sleep tends to evade him since finding a comfortable position is a challenge.  As a result of his discomfort we spoke with the Radiologist to explore what his options were.  Out of that conversation an MRI was scheduled at the hospital to look at his spine to get an accurate assessment of what is going on.  So today was MRI day – it was a long scan taking about one hour to complete.  We meet with the radiologist next week to get her recommendation on treatment.

We are entering the final days of waiting for our third grandchild to be born, our daughter’s first child.  She is having a little boy who already has been nicknamed Chip.  She’s had a good pregnancy, but in the last couple of weeks developed a cough and subsequently dislocated a rib.  That was about two weeks ago and things had started to heal and then yesterday doesn’t she pop it again – poor kid, she’s in a fair bit of pain and knows that the rib could be an issue at delivery time. This baby has been one of the most key motivators for my husband in staving off his cancer and we are almost there!

The weather here continues to be cold, cold, cold.  We have had some serious snowfall and now we are entering a deep freeze.  So cold that my outdoors cats will only sniff the air when I open the door to let them out – they sniff and then run back in the house.  My little dog lasts about a minute outside, I’ve never seen her be more efficient at doing her business.  There are a few more days of this weather and then hopefully it will break.  When it gets to minus 20 or minus 30 Celsius the air literally can take your breath away.  So no walks for us at the present.

More Tests

Last week was a fairly eventful week on all fronts.  My husband, his sister and his niece all went for their chemo sessions.

For my husband the chemotherapy was significantly different from his first round with Cisplatin and he has not had the same severe nausea and vomiting (so far!). Not feeling great, the fatigue is significant, but it is not the nasty vomiting and consequently he has not needed hydration.  His biggest issue has been the persistent pain in his shoulder/neck area – this is what has knocked him down this time.  During his pre-treatment discussion with the Oncologist he identified this problem and the Oncologist reviewed his CT scan and shoulder x-ray stating that nothing really popped out to indicate an issue.  However, he scheduled my husband for a bone scan which set for this coming Tuesday; hopefully we will find out what is happening in his shoulder and neck.  The pain has become unbearable and he has had to increase his pain meds to the point where he is sleeping most of the day.  His mind, when he is awake, is whirring away wondering if this is the cancer back and spreading.  His one greatest fear is that it will spread to his brain.  So Tuesday is the bone scan and by Wednesday or Thursday we will find out what is going on, if the pain is related to spread of the bone cancer, if it is neural in nature, if it is arthritis, whatever, he just needs to know.

My sister-in-law had her treatment on Wednesday.  It seemed to go well, once they addressed her allergic reaction.  She’d had her treatment in the chemo suite and had gone downstairs to wait for her ride home.  While she was sitting in the lobby she noticed that her hands had gone quite red.  A few minutes later a nurse, one that actually worked for her Oncologist, saw her sitting in the lobby and asked her how the first chemo went.  My sister-in-law stated good, except I can’t believe how fast I developed the hand and foot syndrome associated with this chemo.  The nurse looked at her hands, actually saw that my sister-in-law’s neck was turning bright red, and hustled her upstairs to address the allergic reaction she was having.  After they pumped her full of meds and were satisfied she was okay, she left the hospital.  She was still hooked up to her “baby bottle”, which kept the treatment going for another 48 hours.  We saw her that evening and she was in good spirits, probably a little buzzed out by the meds to treat the reaction, but quite mobile and upbeat.  Her son was coming up to stay overnight with her and all seemed well.  The next day she was okay, had a bit of a headache and the baby bottle didn’t seem to be infusing the meds. There had been a kink in the line and once straightened out the meds started flowing.  The fatigue hit by Friday as well as high blood pressure.  She still is dealing with high blood pressure but looking forward to feeling better as the week progresses.

My niece has been flattened by the chemotherapy.  Her treatment is aggressive, she knows she will have severe nausea, she knows she will lose her hair, and she thought she was prepared for the fatigue – but she wasn’t.  What she could do previously without thinking about is now out of the question.  Just doing a load of laundry is exhausting. She doesn’t live close by so we haven’t been able to see her.  She’s phoned my sister-in-law on a regular basis and they are comparing their chemo experiences.  Fortunately this often results in a bit of laughter as they try to rationalize what the hell is happening to them.

The road ahead for all of them is quite different but likely the physical trials will be similar.  I have to say from my perspective, sometimes it feels like I am living someone else’s life and not mine, that is how different things have become.

Koyaanisqatsi

Koyaanisqatsi is a Hopi word that loosely translated means “life out of balance.” (Ref – Wikipedia).  This is how I view my life.  It has no balance, it swings from high to low and it is like quicksilver, changing with a fluidity and momentum that defies description.

Today was results day for my husband’s most recent CT scan so went to the hospital to meet the Oncologist.  The results were not great but not the worst either.  In this CT scan the radiologist identified a blood clot in my husband’s lung that apparently had shown up on previous scans but not been mentioned or brought to anyone’s attention until our discussion today.  A little worrisome but hopefully the Fragmin (blood thinner) will continue to allow the body to break the clot down over time. The Oncologist advised that my husband’s cancer has progressed from his last CT scan.  The cancer’s progression has manifested in a couple of nodules and lymph nodes in his lungs.  Not huge increases but significant enough to put my husband back into the chemo grind starting this Thursday.  The original “mass” is still not in evidence, however, another large nodule was identified in his lower right lung.  So the chemo is without a doubt the way to go.  The drug administered, however, has been changed to Docetaxel which has different side effects from the first combination of drugs used. I suspect that the last of his hair will go and the fatigue again will be an issue – I am hoping that the nausea is not.  This remains to be seen.  The chemotherapy sessions are three weeks apart and there will be three.  So the next nine weeks are scripted.

The visit to the hospital today meant I got to meet up with my sister who works there.  She always pops over for a visit, if she can, her schedule permitting we’ll have a coffee or lunch.  Today was a brief chat – just long enough to hear that she had her own issue – the week before she’d had a minor heart attack.  She attributed it to stress, which is likely correct, but how do we remove the stress out of our lives?  Even when we think we have a handle on things oftentimes we still feel stress or strain or frustration or fatigue or concern (and so on) about events occurring within our lives.  The usual response to something like this is a prescription which makes it all seem better but never really addresses the underlying causes.  Needless to say hearing this news from my sister was very upsetting.

My sister-in-law commences her first chemotherapy treatment tomorrow.  She has a cocktail of chemo drugs that include Oxaliplatin, Fluorouracil and Leucovorin.  Her treatments are every two weeks and will continue for approximately six months.  She will have the chemotherapy treatment at the hospital but will leave with a “baby bottle” that continues the treatment and will be removed approximately two days after the initial hospital administered treatment.  Reading up on these drugs it appears that fatigue will likely be a significant factor throughout, but everyone has a different response and we can only hope that for my sister-in-law she has a good response to the treatment.  Her attitude is great going in – just get ‘er done.  Likewise tomorrow my niece (in-law) starts her chemo treatment for breast cancer.  This is the start of a very aggressive program since it is her second go round with breast cancer,  I can’t imagine how she is feeling.

This is the chaos of my life – all around me crazy things are happening – life altering or life threatening things.  It’s out of control – which is the one true thing, the utter lack of control.  This is the reality we all face, we do the best we can but still nasty stuff happens.  Right now it is “koyaanisqatsi” for our family and we seek ways to bring things back into harmony and balance.

The Infusion

On Friday my husband had his second intravenous treatment of Zometa®, a zoledronic acid often prescribed for bone cancer patients.  The first treatment, four weeks earlier, had been relatively uneventful with no noticeable side effects.  Whole different story for Friday’s – it was like stepping back to mid-July and how he felt then.  The treatment was administered Friday afternoon; a fairly hectic day for us between doctors appointments (him and me), me working half a day, this treatment, and friends and family stopping by.  He was dog tired by the time he went to bed, relatively early for him at 10:30 pm, and I attributed it to the activity during the day.

On Saturday morning when he woke up it was apparent he was under the weather.  He had a low grade fever, headache, and a general body ache.  I left him in bed until noon and checked on him again then.  Ever mindful of the implications of lack of activity, I suggested he get up and start his day.  He needed to take his daily meds and have some food anyway.  I went to the kitchen to make his morning smoothie and get some food ready for him.  A half hour passed and I went upstairs to see what was going on.  My husband was awake but still in bed.  He had felt dizzy when he tried to sit forward and the dizziness had aggravated his headache which made him feel sick.  He needed to get up but didn’t trust himself to be steady enough to make it to the washroom, he wanted my assistance in case.  So this was his start to the day.

As the day progressed none of his symptoms alleviated, they just worsened.  We brought his mother’s old rollator in from the garage to use as a support to help him get around. By the time it was 6:00 pm he was feeling nauseous and the body ache had worsened.  All he would do for nourishment throughout the day was sip on water or tea.  The nausea turned to vomiting by about 8:00 pm and the vomiting made his headache worse.  There was no discussion about going to the hospital – this was not an option as he has a deep distrust of our local hospital.  The hospital where he takes his chemo treatment is a half hour away and he knew they would only send him home with a script for more meds.  I looked on line to see if this reaction could be attributed to the intravenous he had on Friday and sure thing – all of the symptoms were there.  This alleviated some of my stress but didn’t help my husband feel any better.  Bedtime was shades of July when I had to help him into the bed since he couldn’t lift his legs onto the bed.

Looking back, a similar response occurred with his second CT Scan.  He had the first one with no issues, drank the liquid and had the IV, but the second one knocked him for a loop.  All I can figure is that this is the case with the Zometa®.  The first was fine, the second wasn’t; obviously the chemicals disagree with him.  As I write this it is Sunday morning and my husband awoke to still feeling awful, the headache persists and his stomach is still unsettled.  When he is feeling better we will chat through whether this is a treatment he should continue with.  We will ask the Oncologist about other options mainstream medicine has in this regard.  We will also consider TCM and alternative treatments that work to strengthen the bones.

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.