Update 28 December 2020 - Three year Cancer-versary

It was three years today that I woke up at my sister’s place and my brother-in-law told me that the CT scan showed I had fibrosis around my esophagus, tumours in my lungs and liver and metastases in my bones. That was such an absolute shock that I dropped an f-bomb, something rarely heard in their Christian household. 

In the days and weeks that followed, as I went through the medical processes, I sought to process this startling development. I was convinced I would die within weeks or months and spoke with my siblings about administrative details, assets etc (without giving passwords because I am dying, not crazy). 

But after many medical appointments and treatments, ups and downs, hopes and disappointments, here I am 3 years later. Still alive and still feeling reasonably healthy.

Since I last wrote, I have continued with the oral chemo and the initial reaction from the oncologist based on blood tests was positive. I had a CT scan at the end of November which provided some some good news. The scan was not entirely clear but which it did show that there was no progression in the lungs. However, it also showed that the metastases in the bones have progressed. :/ I’ll have to talk to the oncologist to see if anything more can be done for the bones. I can get radiation but that is only for pain relief. It doesn’t necessarily get rid of the cancer cells.

Overall, though, I feel stronger and more energetic than I did earlier in the year apart from the odd aches and pains due to the disease or aging. It is still a struggle to gain weight, particularly because of the reflux, but I still have an appetite and eagerness to eat. The upside is that I am able to embrace a fat-filled diet. Yoghurt with 10% fat, full fat sour cream, ice cream and anything with butter - bring it on. My hair is growing back — with a vengeance, it seems, requiring some strategic waxing and clipping. My head is definitely warmer with some insulation on top although I still wear a light cap most of the time to avoid a chill.

Other than that, things have been very quiet, including over Christmas. I spent Christmas Day with Verla and Randy (all in our pjs) and we opened gifts, watched movies, played games and had a lovely turkey dinner. We had made fruitcake again this year, along with tarts and cookies, and also made a carrot pudding, something our mother used to make when we were younger. We were too full to have it on Christmas Day so we enjoyed it last night.

I expect that New Year’s Eve will be similarly low-key apart from the nearby fireworks display, which Ginger does not enjoy. Like many of you, I will take the opportunity to reflect on 2020, with all its challenges and benefits to our lives, and our hopes for 2021 (including a vaccine). 

And with that, I wish you the very best for the New Year!

Deborah

All dressed up and no place to go.

Halloween

Ginger out an about

Ginger's two ear salute

Ginger in camouflage

Hopeful outdoor art

Best score yet at Five Crowns

Trying to do yoga with Ginger around

Prepared for the extreme cold

Christmas Eve

Update 21 October 2020 - Fall edition

After the joys of summer at the lake, life has returned to normal back in Prince Albert. Or as normal as life with Stage IV cancer gets.

I had a CT scan mid-August to check on how the chemotherapy is working. While waiting for my appointment with the oncologist, I decided to check out my eHealth records that I had recently signed up for. The CT report was already posted. It was very detailed with a lot of medical terms but when I read it, I thought it said there was progression in the liver. Not big tumours but a few of them.

So, the next day the oncologist called, a week before my appointment - never a good sign. He confirmed that the chemo had quit working and that we would have to look at other options.

Here we are again. 

I had very mixed emotions about the news as it had worked for over a year though this had been at a cost, including my strength and energy levels. I lost my appetite and had reflux so wasn’t eating enough (not helped by the stresses of the lockdown). Over the year I lost 30 pounds which is not good when you have cancer. 

It’s also frightening to think of the cancer mutating so that the drugs are no longer effective. It also makes me wonder once again if it’s the beginning of the end. It’s hard to avoid going down that rabbit hole. 
I’ve switched to an oral chemo drug which I take twice a day (two weeks on, one week off). The pills are big and because I would have trouble swallowing them (constricted esophagus) I first tried them dissolved in water which was disgusting. Then I cut them in half which was better but still tasted terrible. Now I have smaller pills but more of them - 10 in the morning and 10 in the evening. 

The side effects so far have been not too bad, mainly continued neuropathy in my hands and feet, dry and cracked fingers, and fatigue. Fingers crossed that the side effects do not become more severe. (As an aside, the neuropathy in the fingers is tingling and a loss of sensation and, in the feet, it is as if my sock has slipped down and the extra material is under the ball of my feet).

In our consultation, the oncologist essentially asked me if this was where I wanted to end treatment or did I want to try something else. One the one hand, I think it is a good question to ask a patient who may be depleted by the treatments. On the other hand, it does remind me of his initial comments that the median survival rate is something like 18-36 months. Something I very much have in mind as I near my 3 year diagnosis anniversary (cancerversary, in MBC lingo).  I know that in the concrete, statistics do not mean anything. At this stage, I feel healthy, am tolerating the medication well and try to remain optimistic about the future. 

One very positive thing is that I don’t have to do IV chemo or drive to Saskatoon for the weekly treatments. I went to Saskatoon the other week just because I could! There was no medical appointment involved, either for me or my sister.

With fall here and the cold weather (and second wave) looming, I try to focus on keeping busy, being productive. I am going through my clothes and donating lots of things that I no longer need or use. I need to go through my work and fancier clothes as I don’t fit them anymore, no longer work or am unlikely to get invited to a fancy reception or dinner. With a little bit of regret, I have to close that chapter of my life.

I’ve gone through many of my papers and recycled or shredded or burned the rest. The last big batch included my medical papers which was a history of wrong diagnoses over several years. It felt good to get rid of the papers, most of which were just paper copies of insurance claims.

I am trying to get more exercise. Walking is easier now that I am no longer on the other chemo. I have so much more energy that I did this summer. Not as much as Ginger who would prefer to play or walk all the time. Luckily for me, she like to nap as much as I do.

As part of my exercise regime, I am taking a restorative yoga class that should help with my flexibility. It is a semi-private class that I take with a friend in her house. I am really lucky because both the teacher and my classmate are very understanding of my limitations. I am thankful to be practicing yoga once again although it does remind me that my body is not is not what it was, one of the many things I have lost to cancer.  

So, I will end this update with more focus on those things for which I am grateful: family and friends for their continued love and support, yourself included; the Ginger care team who take this bundle of energy out for long walks; a very professional and caring medical team that supports me; and medicare and health insurance. I am also grateful that the weather has been mild (relatively) and that the sun comes out most days. And for Halloween candy.

“The days are getting shorter and colder, but I ask you to remember: even as the winter comes in, there is hope and there is light." 
Perseverance.
Seamus Heaney (thanks to Patricia McCullagh for posting).

Deborah

Ginger on the boat with ill-fitting jacket

Vandy

At a local gallery

From a NYC fortune cookie circa 2003.

Always a good reminder that all is not bad.

Brian & Tracey

Purple Prairie Clover

Unusual summer sundog

Yes, we are odd.

Christopher Lake, 5 am

With Sandra & two of her girls

Candle Lake is just as beautiful

Princess Ginger getting groomed

Ginger letting Echo share in the cuddles

Beauty of fall

State of hair, as of today

Update 15 July 2020 - Summer edition

Greetings from the lake. I am here for five weeks with my sister, brother-in-law and, of course, Ginger. I don’t have any significant plans while I am here. Mostly resting and trying to recuperate as best as I can. I have chemo for three of the Fridays so there is that. 

A few weeks ago, I woke up very early and felt grateful. Not so much about being up early but aware of how much that I have for which I am grateful. That I woke up after a restful sleep, feeling rejuvenated. I am grateful for the first coffee in the morning, sipping it while I play Words with Friends, Scrabble and check out Twitter and FB. Also I am grateful for the internet - it is hard to imagine what a pandemic lockdown would be like without access to the internet, streaming services and on-line shopping. I’m grateful for a positive dental check-up with only one small repair. I’m also grateful for books, naps and video calls with family and friends. I have plenty of food and the time and interest to cook and bake. So, I have lots to be grateful for.

I am grateful, too, for the timing of my MBC diagnosis. Even if it could have been earlier, it meant that I could return home to my family in Saskatchewan and retire. I’ve built a life here, with family and friends (and Ginger). I read recently that researchers have found that in some patients, the cancer had started spreading before the main tumour was detectable. I am grateful that I read this so that I feel less guilty about what I did or did not to to cause the metastases. Having been raised Catholic, it is hard to get rid of all of the guilt but I do what I can.

So far, Saskatchewan has not been hit hard by the pandemic and most of the outbreaks have been localized. The province opened up in stages and now even the casinos and bingo halls are operating once again, though not to the same extent. I’m still not comfortable with going in the stores so when I do, I wear a mask and do my best to stay away from people. It’s a way of life now until a vaccine is developed and available. 

I miss going to the grocery stores, and checking out Winners and the Dollar store. I miss hanging out with people without having to worry about whether I need to wear a mask and whether I am far enough away from them. I miss the casual hugs and kisses from family and friends. I miss planning trips and excursions.

I’ve found that I have more blue periods than normal and have learned how easy it is to spiral. I need to get out of the house every day, even for just a short errand or a short walk or to get a bit of sunshine or fresh air. 

I recall my previous commitment to do more exercise and go to the gym. Well, the gym is out for obvious reasons. I tried to do some exercises at home, from a sheet I got from my physiotherapist.  After the second day of doing the exercises, I went for a short walk and had trouble with a pain in my side and difficulty breathing. The pain is on the site of one of my metastases so it was clearly related. As was done in the past, I had a shot of radiation to the area but that did not resolve the pain. It hurt intensively when I stretched those muscles or put weight on them. I had a temporary nerve block done which essentially turned off the nerves in the region. It was diagnostic and lasted less than a day but it did the trick. It is possible I might have one done permanently, if needed. I find now, though, that the pain is not as frequent or as intense. The hardest part of this all was just dealing with the constant pain. It made me wonder if this would be my life from now on and whether it is the beginning of the end. Luckily it does not appear that I am at this stage yet. 

I also have some recurrent pain in my spine and right tibia due to metastases that I will try to get treated with radiation.  I feel like my body needs constant tuning and adjustment.  

As time goes on, I seem to acquire more medication - for the pain and neuropathy, reflux, digestion, anxiety, insomnia. The annoying thing is that with each medication I take to treat a problem (many of which are side effects of chemo), there are more side effects, including fatigue, constipation and nausea. I feel like I am constantly trying to find the right balance. Take something to deal with the one thing but not too much otherwise it could cause constitpation and/or diarrhea and/or gas  so then I have to take something else and so forth and so on. (Sorry for the graphic nature of this line of conversation but this is a blog about cancer.)

I did have one odd experience last month. I had difficulty breathing and a few other symptoms so I went to emergency. They did tests and ruled out pneumonia and a blood clot.  A blood test showed that I had low hemoglobin so I had blood transfusion (my first). It feels odd to think bc of someone else’s blood circulating in my body but it worked. After a few days I felt much better.

So one of the challenges I had was that I was losing weight, due to the reflux. After years of thinking about losing weight, it’s odd to have to think about gaining weight. I switched to higher fat products and am making a conscious effort to eat consistently. I have gained a few pounds so I hope it continues. 

Finally, there is a lovely article by a woman with MBC about how having MBC has prepared her to face the pandemic. She writes this incrediblly beautiful passage about grieving:

“Since my diagnosis, I have lost a lot and I have grieved a lot, over and over again. Loss, grief, assimilation. Repeat. With each cycle, different pieces of me are stripped away. Sometimes it’s physical — different breasts, a thrust off the cliff into early menopause, and the challenging side effects of never-ending cancer treatment. Then there are losses of identity and purpose, roles I have long played, or roles I thought I might play in a future I once found reliable. Living with metastatic cancer requires a persistent relationship to uncertainty, loss of control and the prospect of death.”

https://www.marketwatch.com/story/i-recognize-this-weird-silver-lining-of-the-terminal-cancer-experience-how-metastatic-breast-cancer-prepared-me-for-the-coronavirus-pandemic-2020-04-21

That is all for now. I hope that you and your loved ones are weathering the pandemic well (and in good health). It seems so long ago that this all started but the fundamentals are still good - wash your hands, cough into your elbow, don’t touch your face, maintain social distance and, if you can’t (or otherwise need to), wear a mask. 

Deborah

Sisters birthday video call

Verla's birthday party

Sure sign of spring - the beautiful crocus.

At U of Sask

Selfie with Verla and Ginger

Field of daisies on our walk

Christopher Lake

Field of canola between Saskatoon and PA.

Update 21 March 2020: Pandemic edition

So, obviously the Morocco trip did not go ahead. I had been watching the news since late January and finally made the decision to pull the plug and cancel. At the time, there were only a few cases and things seemed to be ok but given what was going on in Italy and other European countries, I wasn’t comfortable about taking the risk of being stranded there. As it turned out, it was the right decision at the right time. Morocco turned into a hot mess in the meantime and many tourists remain stranded in the country. So, no trip to Morocco nor to Squamish for a retreat in May that I’ve been trying to go to for two years. We’ll be renting the cabin for 5 weeks this summer so I’m looking forward to that.

The pandemic has underlined one thing to those of us with metastatic cancer or other terminal/chronic diseases and even to the elderly - that if we catch the virus, we will be screwed. In the face of limited medical resources, the medical professionals will have to triage and we may not make the cut. That is a really ugly fact of life so we have to take measures to guard our health. Luckily, many of us already practice social distancing and know the value of hand sanitizer and disinfecting wipes. I am an introvert and can happily spend the day at home by myself without talking to anyone. (I have gone for years without talking to the people sitting next to me on planes.) I’m lucky to have that sweet wacky dog Ginger who makes me go outside a couple of times a day.

I've been so lucky to have family and friends nearby that can help me during this time. I really have been humbled by the number of people who have called or sent me messages to check on me and to see if I need anything.,

I recently read a lovely book, The Unwinding of the Miracle by Julie Yip Williams, about the life and death of an extraordinary woman. She was born with cataracts in post-war Vietnam where medical help was non-existent. Her family left by boat to Hong Kong and immigrated to the US. Despite being legally blind, she graduated from Harvard Law School, worked for a firm in NY, travelled the world by herself and had a family. She was diagnosed with Stage IV colon cancer when she was 37. She writes about her life, its challenges and the realities of living with and dying from cancer. And finding peace. It’s really quite an amazing book and I recommend it. While I have a different form of cancer, she writes about issues that concern many of us who have terminal diseases.

To continue on this theme, I have some interesting readings to suggest for you.

Swedish Death Cleaning - now would be a good time

https://nohalfmeasures.blog/2020/02/10/swedish-death-cleaning/

Getting your things in order

https://time.com/5640494/why-you-need-to-make-a-when-i-die-file-before-its-too-late/

What does it feel like to die - really interesting and not too morbid 

https://m.youtube.com/watch?fbclid=IwAR24P_2ZIIznTbhIlaZBSgAb0OfFurZKBgGMgsTfDjtUhcsSqmvlVFkpjjM&v=Vcrur4wpuGw

In these difficult times, I wish you the very best. Be kind and patient with others, and yourself. And don't hoard toilet paper.

Deborah

Siblings at retirement party

Some family members still think I am a spy!

I was presented with the Cancer Card to get me out of awkward situations.

Update of my buzzcut.

Chatsis sisters like their Patagnonias.

Update February 7, 2020: Good and good-ish news

Today was my trimonthly meeting with my oncologist to discuss scan results and treatment.  There was some good news - the fluid around my heart is gone and there has been no progression in the tumours. No spectacular progress in reducing the size of the tumours though, so the chemo treatments will continue. I’ll be assessed again in another 3 months. After much discussion, the oncologist confirmed that I will be on this current medication until it quits working, the side effects are too bad or I decide to take a break. The problem with the latter is that there is no guarantee that the current drug would continue to work after a break and one of the other options would need to be considered.

So, I continue with the chemo and managing the side effects. I was in a slump in January but my medications were sorted out and I feel better. Plus it helps that the weather has been warmer (even if I know the cold weather will return) and it is lighter earlier in the morning and later in the afternoon. One of the benefits of living further north.

While I was in my slump, I watched escapist TV shows and movies but I also watched “The Big C”, about a woman diagnosed with stage 4 melanoma. Sounds like an odd thing for a woman with stage 4 breast cancer to watch, no? Well, it was interesting. I could relate to some of the things in the show although not the general craziness of the storyline. One thing I found funny was how easily the main character was able to access her oncologist. Perhaps that is the case in some ritzy private clinics but that is definitely not the case in Ontario or Saskatchewan. I feel lucky that I can pass on messages to my oncologist’s nurse.

Generally, things are going well. I had a great Christmas with family in Regina and Prince Albert. Just before New Year’s, I went to Saint Lucia for a week. I met up with my friend Michelle who is on a 7 month sailing trip from Saint Lucia to Australia! Anyway, I enjoyed my time on that beautiful island, especially being warm. 

I have a 2 week trip to Morocco at the end of March to look forward to. The oncologist wasn’t super happy with the timing of the trip as it will interrupt the chemo schedule but it’s difficult to plan as the schedulers only book the appointments a month ahead of time, at best. Anyway, I can’t live my entire life around the chemo schedule so I have to make other plans. I want to do as much as I can while I still can. Now if I could only get back into the habit of going to the gym.

So, my readers, that is about all for now. No inspirational quotes or book recommendations, just a few pictures. 

Sisters

Ginger models for Christmas

Brian, Tracey, Tiffany

May we help you?

Tired of the hair falling out

Once it's done

NYE pic

The Pitons

Beach near the guest house

Infinity room at AGO in Toronto