Last Update

Sunrise this morning seen from Pam's room at Riverview (that's the Moon up there)

This morning I lost my wife and my best friend. Pam passed away peacefully in her palliative care room at Riverview. Her sister Theresa and I were there holding her hand.

I wrote in the last post about the symptoms that were causing Pam such discomfort - the retching, nausea and dizziness/disorientation that prompted her admission to Riverview. While the retching and nausea were able to be sorted out with some medications, the dizziness and disorientation worsened over the course of her 12-day stay. Some treatment with scopolamine (a drug often used by cruise-ship passengers to ward off seasickness) was used with a little success, but it made Pam very drowsy. The symptoms were almost certainly caused by advancing brain tumours in the cerebellar region of the brain, and no treatment could be had for those - the metastatic disease advancing everywhere was always going to mean our journey would soon end.

Fortunately despite COVID protocols Pam was able to have many visits from her parents, nieces, and of course me and Theresa. She had phone calls from others including my parents and my sister. While she was having real difficulty communicating with us near the end, we could see from her face that she was understanding what was going on. She also showed her superhuman stamina and endurance by having a conversation with doctors on Thursday when we hadn't expected she could even muster the energy to talk. But it was important to her and she obviously dug deep. She was a true battler and was the most determined person I've ever known.  

Pam was also selfless and generous. She never wanted to be the centre of attention but always did her best to help others. She knitted innumerable projects - scarves, hats, and especially stuffed toys - and her nieces, nephews, and friends' kids were the beneficiaries. She really enjoyed the delighted reaction of kids who got her toys. She always supported me in my work and other activities. We were really a team, always rowing in the same direction, and when one person's arms got tired the other rowed that much harder.

I don't know what I'll do without Pam but I know she wanted me to carry on - she told me that often. I know when I watch one of our TV shows or see something funny or interesting, the first thing I want to do is share it with Pam. I guess it will take some time for me to come to terms with that.

Anyway, thanks for reading and I wish you all love and peace. 

Rabbit this morning on the way home from Riverview

 

An update

A Monarch butterfly I saw while on a walk last week

As I write this, I’m sitting with Pam in the Palliative Care Unit at Riverview Health Centre, not too far from our house. She is resting with her eyes closed so I thought it would be a good opportunity to update the blog. As well as being a way to send out news to our friends and family, I find the writing somewhat therapeutic as well.

For some time this year Pam’s legs and lower abdomen had been very swollen and getting worse. This was apparently caused by internal blood clotting around her IVF filter, a small device that was installed below her heart and lungs in 2010 to help prevent catch stray blood clots from her lower body and prevent them causing more serious problems. It seems that the filter has done its job maybe too well, because a recent CT scan revealed that the massive swelling was caused by poor return of blood to the heart caused by clotting in and around the filter, and through the inferior vena cava. Pam was started on dalteparin and lasix to try and dissolve those clots and purge water from the lower body.

This course of treatment didn’t work that well at home as the swelling got worse and Pam’s weight increased to almost 145lbs (!) Finally her breathing was getting bad enough that her palliative care nurse recommended she go to the ER. This was on July 5.

Pam spent two weeks in the hospital but it really was beneficial in addressing the swelling. Aggressive treatment with injected lasix and dalteparin resulted in her losing 25lbs of fluid weight, and she came back home last Sunday, July 19.

Last week was not bad and although Pam was pretty weak from two weeks in a hospital bed, she wasn’t gaining anymore weight. Last night we had her sister and family over to the house for pizza from Tony’s (it was excellent) and a visit.

This morning Pam woke early and was terribly sick and dizzy, retching like crazy and unable even to stand - a real shock considering she’d been feeling relatively good the previous evening. It was bad enough that we phoned the on-call palliative care nurse and she recommended Pam come in to a bed so they could try to sort out the problem. So she went by ambulance to Riverview this afternoon.

We really don’t know for sure where we go from here. The idea is to try and get Pam’s meds sorted to address the dizziness and nausea. We reckon that these are being caused by the advancing brain tumours and since no treatment to address those directly is possible, the steroid that’s being used to treat the symptoms might need to be bumped up a bit. If that works out then she’ll be able to return home. In the meantime the palliative care unit is very comfortable and quiet with a private bedroom, and the staff are wonderful. Since all of the cancer treatments have now been discontinued the objective is to address these issues and try to have Pam be as comfortable as possible.

As promised last time, here are some little friends Pam has knitted recently 

Chemo has started and PleurX update

I'm trying to update the blog a bit more regularly now as things are happening quickly with Pam's treatment. In the last update I noted that Pam would be starting a new course of chemotherapy and this has in fact happened - she had a new port-a-cath installed on schedule and had her first infusion of doxorubicin a week ago today.

There does seem to have a bit of a side-effect to this one as Pam has become quite nauseated from time to time. However we seem to have figured out that this is triggered by having an empty stomach. Eating several small meals throughout the day is standard chemo advice and once Pam has started snacking a bit more to keep her stomach full, it seems to have helped somewhat.

One thing I didn't mention in the last update was that Pam's respiratory doc had recommended that she have her PleurX catheter re-installed in her chest, to help drain the pleural effusion fluid that's been accumulating again around her lung. She had that done on 16 April as a day surgery. Unfortunately, although the procedure went very well, the drainage of fluid (done with a vacuum bottle) was extremely painful for Pam and she had to be admitted overnight for pain control. The next day I picked her up from the hospital around suppertime. She was tired but feeling OK.

Subsequently the homecare nurses have been coming three times a week to drain fluid. This has been causing Pam some pain but with a prophylactic painkiller taken beforehand it's manageable. She's been having some issues with getting up and down, as well as being very tired, but we're hoping this may improve a bit over time. Fortunately I'm still working from home (as is most everybody) and it's therefore easier for me to take her to chemo and other appointments - I'm thankful for that.

Now to the more fun part of the post... it was our cat Leonard's 22nd birthday this month! We found her as a kitten at the Birtle Post Office and we couldn't leave her there. We advertised around the town to see if she'd been lost but no responses... she probably was just dropped off there. Anyway we've been looking after her for 22 years now and she's lived in four different homes with us. Leonard is still doing well (she's on a few different meds though) but arthritis and old age have taken a bit of a toll on her grooming ability. Once the vet clinic is able to provide non-essential services again we'll take her in for her twice-yearly grooming/"spa day" :-)

Pam has been keeping pretty busy with her crafty knitting and I'll post some pictures of what she's been up to in the next update!

Stay healthy everybody and look after each other.

Love, D.

Update (Social Distancing Edition)

Hi all,

Looking back, it's been some time since the last update. There has been a bit of late-breaking news so I thought I'd take the opportunity to update the blog.

Pam's been taking Kisqali (ribociclib) since mid-2018 as noted in the post below. The drug did seem to work to slow progression and was basically free of undesirable side effects. It was also easy to take, being in pill form. However Pam's oncologist, Dr. G., has noted that the metastases are now progressing more steadily again and a change in therapy would be appropriate.

So the plan is that Pam will be starting on a more traditional IV-infusion chemotherapy with doxorubicin. She's going to have another port-a-cath installed to facilitate infusion. This will avoid having to start an IV in her arm each time. The install is set to happen on Monday 30 March (!)

It remains to be seen exactly how chemo is going to work given the current pandemic situation, but obviously it's important enough that the CancerCare chemotherapy clinic will stay open regardless. We're not sure what side effects the new therapy will have, but hopefully they'll be manageable.

That's it for now. I hope you and yours are staying healthy - both physically and mentally - in these challenging times.

Oh, and since we try to end these posts with something positive, and in keeping with past updates on the bathroom reno at the old house, I'll mention that after over four months (!) our upstairs bathroom renovation here is almost finished. There's just a few small things for our contractor to finish - paint touchups and installing drawer pulls and doing some final tweaking on the vanity. We're able to use the shower and everything, and the heated floor and towel bar sure are nice :-) Planning to get some new towels as well!

Love to all,

Dallas

Post-Radiation Update

Hi all,

Just wanted to post an update now that Pam's been done her brain radiation for about a week.

The first week of treatment was pretty tough as Pam was in much pain and nauseated as well. However the second week was much better once her sense of taste improved so that she could drink lots of water. That really seemed to help. So drink your 8 glasses of water a day, everyone :-)

While she was undergoing the brain radiation, Pam was on a break from chemotherapy. This seems to have allowed some of the other mets to progress a bit, unfortunately. However, she's been accepted to a program for a new chemotherapy drug, this time in pill form. The drug is called Kisqali (where do they get these names??) and is new. It's intended specifically to treat metastatic breast cancer. Some of the other women at Pam's group are also taking it and it seems to be well-tolerated so we're hopeful of a result.

Other than that, Pam's been feeling OK, although her chest is bothering her a bit. She's resting at home today and waiting for the delivery of her new drugs.

So to finish this update with something cheery, here's a photo of our garden obelisk we built a few weeks ago :-)

 
Dallas

Update

Hi family and friends,

Just wanted to post an update with the latest.

As some of you will know, Pam's been on and off chemotherapy a couple of times this year. She happens to be "off" right at the moment. That's because the brain tumours (last actively growing in 2009) have become active again and been making tiny nuisances of themselves. So Dr. B. (radiation oncologist) has recommended that Pam have some whole-brain radiotherapy again to address them. They don't like to do whole-brain radiation more than once unless it's really necessary, as it can damage the healthy brain tissue. However Pam's noggin has had nine years to recover from the last round of treatment and the doc reckons it's important to treat the tumours at this point. This has necessitated taking a short break from chemotherapy.

So Pam has now completed four of ten scheduled radiation treatments. They happen once per weekday for 10 days and will be complete next Friday. Unfortunately yesterday and today were not five-star days, as Pam's oncologist told her yesterday that the metastatic disease has been growing somewhat. She also was in a lot of pain yesterday and today that didn't respond to her usual meds, as well as throwing up a bunch - very reminiscent of 2009 and not in a good way. The upshot was that we spent most of today at Health Sciences Centre for Pam to have an x-ray and get some new meds prescribed for pain and nausea. 

So I'm back at the office for a bit and Pam is resting at home. She's very tired but some IV medication helped ease the pain and she just needs to nap. Fortunately she's no longer working outside the house so she can concentrate on her health - although the many appointments and treatments take up quite a bit of time.

There is a glimmer of hope on the horizon though as Dr. T. has prescribed a new chemotherapy program to start after radiation is over. It's a newly approved drug for metastatic disease and we're hopeful that it will show some good results.

In the meantime, here's a picture of our neighbourhood turkey, "Kemal", sitting on our front step. :-)

Love to all,

Dallas

Post-Surgery Update

So Pam has been home for a couple of weeks after her surgery and things have been mostly OK. She is still having some pain in her side which bothers her in the evenings, and she gets quite tired still.

Dr. T., the oncologist, has recommended that she take a bit of a break from chemotherapy for now as the cancer seems to be moving pretty slowly. The most recent blood work bears this out as the markers are down slightly. They're going to keep a close eye on those markers as well as CTs to keep track of fluid around the lungs.

Homecare finally got themselves straightened out and are coming once a week to drain the pleurex catheter for the fluid around the lung. Things are reasonably stable for now so that's good.