Are you bursting with Christmas cheer right about now? Have you had that last little bite of sweets, promising no more until...... well maybe one more and then wondered why you ever took even one more bite?! Our good fortune was not having made a full turkey dinner at home, until tomorrow.
We got to enjoy ham and what I thought was a huge roast beef at Brooke and Mike's but quickly learned it was venison. I heard it was great! Adventuresome as I am not, I passed on the delicacy. We enjoyed the company of twelve of us joining together like the twelve days of Christmas. Blended, extended and somewhere in between. Christmas Day we had our own kids in and out, in and out, in and out, then headed to Mike's brother's for a ham and turkey dinner. My appetite has been much less than normal making it easy not to overindulge. There we had a reunion of their two children, partners and grandchildren including great grandson Baby Kylar who is now 18 months old. A cheerful, happy little boy still in need of our prayers as he explores the world of living with Cerebral Palsy. These two young parents are doing their best caring for and clearly loving this desperately sweet, special needs child. Prayers go on.
Let's end the year with a medical update with some substance. The decision was made not to do interim blood work between chemo treatments given my positive energy levels. Hemoglobin moved up just a couple of points to 91 so at least stable; no need to rush to action (like a transfusion). Weight is 132.6 lbs of which, I would say, a good 10 lbs is a spare tire spreading comfortably around my middle. May be a good thing to focus on next year (sounds so far away huh?)
Blood pressure was in the normal range for me at 104/57. Needless to say I don't have to strictly control my salt intake.
The monthly tumour marker blood test known as CA125 as an indicator of disease activity continues to trend in the wrong direction. This time up to 315 (remember a normal healthy person is 35 yet mine last year was over 1600). The signal this time though, is it's not reacted to chemo this way before. I've had the same chemo protocol three times now since 2016 and the previous two times, the CA125 tumbled nicely into ranges below 100. It's one of those things that cause the doctors to go 'Hmmm'.
The cat scan was described as confusing which is really saying it reflects mixed results. Let me preface the details by saying overall, the cat scan is pretty darn good given where we're at. It's done with a view of the chest, abdomen and pelvis. There has been slight improvement in various areas of my liver and there are no significant changes. The downside is there is a measurable growth in the inferior right lobe of the liver making it about 2 x 3 inches. The other major mass in my liver is about 5 x 4 inches but hasn't misbehaved. Hey if you put them together I'd end up with a 7 x 7 inch square! Don't think it works that way though.
No other abdominal organs appear to be involved.
There are no issues with bony skeleton.
The overall summary is 'Slight progression of hepatic metastatic disease.....no other significant changes.'
Isn't this exciting news to be reading on New Year's??? Feel free to cast it aside as you enjoy your day being grateful for all the good things in life. Overall I must say, this has been good news. What you might be asking is 'well now what?' 'Where do you go from here?'.
It seems the chemo has run its course in effectiveness so we are going to change up the treatment plan in an effort to confuse the cancer cells. Chemo for December 19th was cancelled and I was put on a hormone treatment plan of simply one pill per day. It's called Letrozole and is one step up from Timoxofen, a very commonly used drug used with breast cancer patients. Nurse practitioner Jan went over a review of my file over the phone and concluded:
It's ok to go off the chemo drug Taxol. It's a good decision to go on Letrozole. It is an estrogen blocker which, in my case, is a good thing as the cancer cells feed on estrogen. She considers it a really good treatment option as it may go after the liver lesion, the 2 x 3 mass which hasn't responded during the first half of chemotherapy.
Ideally, everything will remain the same or improve. From here I have a three week review to see how I'm managing on the hormone therapy with a scheduled cat scan for early March. I must tell you the first few days on this drug were questionable. Oh my, night sweats like someone pouring a cup of water over your chest, changing 2-3-4 times a night. On top of this feelings of nausea. Thank goodness I still had medication to deal with post chemo nausea. Ya right. Well my decision to take those during the day left me flat on the couch nodding off one way, turning over, nodding off again, turn, repeat and still sleep at night. And then seemingly out of nowhere I developed a muscle ache in my mid back which made all else pale in comparison to the pain. Welcome back Hydromorphone.
All that pre-Christmas stress and rush I've felt in the past simply fell like melting snow, here for a moment then gone for good. It was a great way to practice mindfulness and staying in the moment.
In amongst everyone's visiting, I am ever so grateful for how kind and considerate our family has been to my latest little tumble down a slippery rabbit hole. When I shared my feelings with Matt, he simply replied 'Then don't do anything stressful.' Funny how sometimes we feel like we need permission. Nathalie arrived home from Victoria on the 20th and while we thought she'd be home with us for most of her stay, she's been doing what most 24 year olds do - jam pack every moment of every day catching up, crossing items off an agenda, visiting friends and basically using our house as a stop over or home base. Her brother Gabe and partner Maddie arrived on I think the 23rd and while we thought they'd be staying with us, they'd brought their cat Ziggy, so they promptly advised they'd be staying with Maddie's sister in Kingston. No cat's in our house. The point I'm making here is how we had an original, tentative plan, yet by remaining calm, only doing what we could, things shook themselves into place relieving us of being the 'Innkeeper' for everyone's night. They are actually quite helpful, clean and considerate so it wouldn't have been a problem but God just said, 'It's ok, I'll give you a break.' Thanks God.
Another friend of Nathalie and Paul's (her boyfriend) was supposed to stay with us last night and tonight but as it turns out, he's opted to stay at Paul's house with gently nudging from Paul. And no, I'm not fretting about what people might be thinking or if somehow we've been rated on Air B&B as not being suitable hosts lol, just kidding.
This morning I received a flustered call from Matt asking me to pick Ella up a Woodenheads where he and Jaclyn work as there was some mixup in the schedule and while they were both to be off today, both were scheduled in. Oh my! Of course I said yes, went into the garage to jump into my super mobile and fly to the rescue only to discover the front driver's side tire was flat. Back in I went, Mike instructed me to take the truck and on he went with figuring out how best to get the tire fixed (he did and we had it back by 2 pm). I am so sincerely and genuinely, almost bursting with joy, at how calm and unruffled I've remained through it all.
For a very long time I've known a trek into the depths of my inner being would be necessary, to reflect on who I really am and poke around until some things started to fall into place. I can't really identify anything specific, but I can watch myself as though watching smart tv with more and more examples of peace filled moments which, in the past were frantic and, as Mike would sometimes say 'like an open nerve'!
Last Saturday, we had Ella overnight and, when we do, usually attend Saturday 5 pm Mass. As we were walking up to the church she looked up and asked if she might be able to light the Advent candle (again). She had done so a couple of years ago and I was thrilled she even remembered!!!!
In an effort not to disappoint her, I gently told her children were usually asked before Mass and they may already have chosen someone. Happy with the answer we quickly found our seats, ready for Mass to begin. Not a minute later, Michel, a seminarian assigned to our parish, walked right up and sat in the row in front of us. I thought, oh sure, he's going to ask if I will serve at Mass just when I told Mike and Ella I wouldn't. Oh no, he turns around, speaking directly to Ella, asked if she'd like to light the candles. Candles you say????? As it turns out she and I were invited to process with the altar servers and priest to the front of the church and, with no help from anyone Ella lit the taper from the candle on the Altar (quite high for her to reach) then confidently walked back and lit each of the four Advent candles in succession. It was so nice to confirm to her God had special plans for us to go to Church that evening as He had a job for her to do. Keep spreading those seeds! She was thrilled and had many parishioners tell her what a good job she'd done.
Earlier that week we drove to Lansdowne for granddaughters Azlyn and Matilda's Christmas concerts at their school. Of course they weren't on the same day but, again the beauty of retirement allows us the luxury of taking the time to offer our encouragement and support whenever they performed. They each sang with their classes one Christmas song and we were able to soak in their in school behaviours and laugh with 4 year old Matilda's serious approach to her role as part of her class choir.
Their 10 yr. old brother Ayden served at a bake table at the entrance to the school. He came to me, absolutely glowing to say a man had just bought a $10 plate of cookies, paid with $100 bill and told him to give the change to the Foodbank where the proceeds were going. He said how he will never forget the incident for many, many years. The magic of true Christmas is everywhere if we just lend an ear, keep open an eye and remain aware of our surroundings.
Mike has been an absolute rock over the past couple of weeks, not like he isn't always, except when he caught the nasty cold mid November! He is forever at the ready, encouraging me to do whatever I need to feel better with never less than a kind word. I cannot say enough about the hero he has been to me not only these last six plus years, but in the more than 14 years we've been together. God has blessed me twice in a lifetime. I'm not really sure of the situations people find themselves in when one partner is diagnosed with a life threatening illness. Nor do I make any effort to find out. I don't need to make comparisons to learn how good my life is right now. All I know is we're able to laugh together, cry together, play together and even work together despite him having to do all the heavy lifting these days. This back pain leaves me wondering if I've met my match. Maybe for a few days, but I rely on that old streak somewhere inside where a tiny, but mighty voice declares 'Don't tell me I can't!!!' Imagine hands on hips and one foot stomped out in front of the other, eyes flashing. Well, I think she's just about had enough of this nonsense. We'll see what the new year brings!.
As I close this message just in time to see the ball cascade down Times Square remember my only resolution for many years now is simply:
To be able to say I'm glad I did rather than I wish I had!
On that note, goodnight, God Bless, and Happy New Year!
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."
Monday, 31 December 2018
Saturday, 15 December 2018
Waiting, Scurrying and Nudges on the Way to Christmas
Here we are mid December having arrived in a flurry of activity yet somehow feeling slightly ahead of the annual priority juggling, while the material world vies for our full and total attention. Something which is helpful, to me at least, is a strong reminder, we are actually in a period of waiting, of joyful anticipation to celebrate and welcome the most popular birthday recipient of all time. I'm not sure why this year it's in the forefront of my mind rather than the usual trappings of the holidays. Maybe I'm getting better at 'Keeping Christ in Christmas', or acknowledging He is the 'Reason for the Season'. However you look at it, I like it!
It's been fairly quiet on the medical front with one round of chemo, a cat scan without results and a general feeling of wellness. Having said that, I was surprised when I was approached during my last session of chemo to say my hemoglobin was low (regular is between 120-150); mine was at 89. This puts me at risk of not being able to get treatment. The typical remedy in a situation like this is to give a transfusion. As it turned out, given my energy level (high even for me!), it was decided to leave well enough alone given my pep and see what the blood results are this coming week. Seems how I'm feeling is considered more accurate than a report. After all, reports can say anything, and anything is possible with prayer!
A more detailed update will follow as we close the year at the end of December. I've had a meeting with myself and Mike, to accept whatever the results are when we get the summary of the cat scan on Tuesday. I don't want to hang in anticipation of what it might say, good or bad and then react badly if the news is less than positive. After all, we are not at the end of the road of options. It would just become a new reality, another adventure on this path. I summarize it this way; Can you imagine what life may have been like had I taken the initial diagnosis and moaned, groaned, cloaked myself in self pity and worn my illness like a rain soaked overcoat despairing over every event along the way? Instead we've had six years of living life every day well until I'm not and then dealing with it! We've created lots of memories and lived lots of life along the way.
The last couple of weeks have been sprinkled with lunch and dinner out with friends, visits and making lots and lots of candy. You've heard about my one and only holiday and year round effort at being a domestic diva. It is to make the best peanut brittle one can ever taste thanks to Doris Lloyd, my Dad's dear friend of many years. She taught me how to make it and now I make it for her given she's 96, living in a long term care home. What a heartfelt turning of the table. Of course a quick story is coming here......I've written before about a Nun at the Motherhouse whose only wish last Christmas was peanut brittle, and she was 99! This year I decided to ask permission from my dear friend Sr. Patricia Ann (Sr. P.A. as we affectionately call her) if it would be ok to make a batch just for Sr. Benilda. Before I had a chance to ask, Sr. P.A. call me a couple of Fridays ago to say Sr. Benilda passed away a month after her 100th birthday. There was to be a visitation attended by her 4 nieces from Winnipeg and B.C. followed by a Funeral at the Motherhouse the next day. Over the weekend I pondered what I might do to honour this fan favourite. I felt a nudge to consider something but was held back by feelings of vanity. After all, who am I to think it might mean anything to anyone to insert myself during their grieving bearing gifts of candy?
Understanding protocol, I called Sr. P.A. on the morning of the visitation to see if my idea was at all appropriate. After we talked back and forth, she agreed it would be lovely to drop by and would meet us at the door. Thankfully I had made several batches of this 'caramel gold' that very morning and made up four little bags for the nieces with a tag 'In memory of Sr. Benilda' along with a larger sack for the Sisters in general. We were ushered to the front of the Chapel, paid our respects and were introduced to the family. Sr. P.A. of course did so with grace and dignity explaining our connection to their beloved aunt. As I handed each one their token of appreciation, in turn, they started to cry saying they had heard about and one had even had the delight of tasting a few morsels. The reaction was so touching, I was almost overcome with joy to realize what an impact such a simple act could have. One of the nieces actually asked to set up an arrangement where she might order it and I ship it to her in Winnipeg. Oh my! As it happened two priests were present at the time, commented on how 'sweet' the gesture was but also said they didn't know I made peanut brittle. My reply was 'It's there for the asking', their response? 'Consider yourself asked'. Too funny. I'm not sure I can impart the overall feeling of true grace we felt during such a brief exchange. For me it was a big, bold step in presuming my actions would be welcomed by the Sisters, even with Sr. P.A.'s nod of approval. All I can say to you is when you get those gentle nudges, remain open, pay attention, and most importantly act when it feels right.
Last Sunday, I was invited to Matt and Jaclyn's to build and decorate a gingerbread house with Ella. On arrival, Christmas music was playing, the three of them were decorating their very first Christmas tree, enjoying every moment of creating a new tradition together. At one point, Matt and Jaclyn, and even I turned away from the tree decorating to do some small task to which Ella reacted by saying "Do I have to decorate the tree by myself?' Oh, my out of the mouths of babes as they say! I have shared the same feeling many times over the years and quickly reassured her it was not the case and how having to decorate by yourself can be no fun. I felt it was important to acknowledge her feelings. There of course can be times when such an activity, on your own can be peaceful and almost restorative, yet most of us clamour for the participation of others closest to us when decorating a Christmas tree. Together we completed the task despite heroic efforts in trying to affix the star at the top which decided it was not the star for the job!
As we built the gingerbread house, Matt assisted with his engineering prowess (after all he has a B.A. in Social Sciences lol) but left the construction to us. It was delightful to have the building come together and have Ella wear the 'white hat', leading the way in architectural design. Oh my, I just realized I didn't take a photo of the final product to share with you. Oh well, I leave it to your imagination to see it with your mind's eye. Matt's comment as I was leaving summed up the afternoon we shared 'It's the most Christmas spirit I've seen since leaving home.' I couldn't agree more as he and Jaclyn settle into their married life together.
Today is the 27th birthday of my favourite identical twin sisters, Michelle and Paige Kasaboski and tomorrow is Michelle's second Christmas concert, this year at the Grand Theatre. She not only has a beautiful voice, a bit like Karen Carpenter, she plays music and has written a number of songs. Sister Paige is the Producer to Michelle's lead on vocals and tomorrow will definitely be a highlight in sparking the festive season. A number of years ago I was asked to be their sponsor for Confirmation in the Catholic Church. During the ceremony, as the candidates line up to be confirmed, the sponsor stands behind with a hand on their shoulder. As the Bishop confirmed one of the twins and moved to the next, I too moved to the next. With a twinkle in his eye, his Grace looked at me to say 'Oh, you're doing double duty today'. I agreed and have been privileged to know these girls and their older sister since they were about 8 years old and watch them grow and mature into lovely young women.
I will leave you with a wish for you and yours to enjoy the next couple of weeks with family and friends. May you share with one another a deep sense of loving community, whatever your circumstances. I wish you good health and peace in your heart. I know the end to our year is better the more we let God take charge - for a change. All the very best and I hope to be back on New Year's Eve.
Take care, hugs, God Bless, and Merry Christmas
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."
It's been fairly quiet on the medical front with one round of chemo, a cat scan without results and a general feeling of wellness. Having said that, I was surprised when I was approached during my last session of chemo to say my hemoglobin was low (regular is between 120-150); mine was at 89. This puts me at risk of not being able to get treatment. The typical remedy in a situation like this is to give a transfusion. As it turned out, given my energy level (high even for me!), it was decided to leave well enough alone given my pep and see what the blood results are this coming week. Seems how I'm feeling is considered more accurate than a report. After all, reports can say anything, and anything is possible with prayer!
A more detailed update will follow as we close the year at the end of December. I've had a meeting with myself and Mike, to accept whatever the results are when we get the summary of the cat scan on Tuesday. I don't want to hang in anticipation of what it might say, good or bad and then react badly if the news is less than positive. After all, we are not at the end of the road of options. It would just become a new reality, another adventure on this path. I summarize it this way; Can you imagine what life may have been like had I taken the initial diagnosis and moaned, groaned, cloaked myself in self pity and worn my illness like a rain soaked overcoat despairing over every event along the way? Instead we've had six years of living life every day well until I'm not and then dealing with it! We've created lots of memories and lived lots of life along the way.
The last couple of weeks have been sprinkled with lunch and dinner out with friends, visits and making lots and lots of candy. You've heard about my one and only holiday and year round effort at being a domestic diva. It is to make the best peanut brittle one can ever taste thanks to Doris Lloyd, my Dad's dear friend of many years. She taught me how to make it and now I make it for her given she's 96, living in a long term care home. What a heartfelt turning of the table. Of course a quick story is coming here......I've written before about a Nun at the Motherhouse whose only wish last Christmas was peanut brittle, and she was 99! This year I decided to ask permission from my dear friend Sr. Patricia Ann (Sr. P.A. as we affectionately call her) if it would be ok to make a batch just for Sr. Benilda. Before I had a chance to ask, Sr. P.A. call me a couple of Fridays ago to say Sr. Benilda passed away a month after her 100th birthday. There was to be a visitation attended by her 4 nieces from Winnipeg and B.C. followed by a Funeral at the Motherhouse the next day. Over the weekend I pondered what I might do to honour this fan favourite. I felt a nudge to consider something but was held back by feelings of vanity. After all, who am I to think it might mean anything to anyone to insert myself during their grieving bearing gifts of candy?
Understanding protocol, I called Sr. P.A. on the morning of the visitation to see if my idea was at all appropriate. After we talked back and forth, she agreed it would be lovely to drop by and would meet us at the door. Thankfully I had made several batches of this 'caramel gold' that very morning and made up four little bags for the nieces with a tag 'In memory of Sr. Benilda' along with a larger sack for the Sisters in general. We were ushered to the front of the Chapel, paid our respects and were introduced to the family. Sr. P.A. of course did so with grace and dignity explaining our connection to their beloved aunt. As I handed each one their token of appreciation, in turn, they started to cry saying they had heard about and one had even had the delight of tasting a few morsels. The reaction was so touching, I was almost overcome with joy to realize what an impact such a simple act could have. One of the nieces actually asked to set up an arrangement where she might order it and I ship it to her in Winnipeg. Oh my! As it happened two priests were present at the time, commented on how 'sweet' the gesture was but also said they didn't know I made peanut brittle. My reply was 'It's there for the asking', their response? 'Consider yourself asked'. Too funny. I'm not sure I can impart the overall feeling of true grace we felt during such a brief exchange. For me it was a big, bold step in presuming my actions would be welcomed by the Sisters, even with Sr. P.A.'s nod of approval. All I can say to you is when you get those gentle nudges, remain open, pay attention, and most importantly act when it feels right.
Last Sunday, I was invited to Matt and Jaclyn's to build and decorate a gingerbread house with Ella. On arrival, Christmas music was playing, the three of them were decorating their very first Christmas tree, enjoying every moment of creating a new tradition together. At one point, Matt and Jaclyn, and even I turned away from the tree decorating to do some small task to which Ella reacted by saying "Do I have to decorate the tree by myself?' Oh, my out of the mouths of babes as they say! I have shared the same feeling many times over the years and quickly reassured her it was not the case and how having to decorate by yourself can be no fun. I felt it was important to acknowledge her feelings. There of course can be times when such an activity, on your own can be peaceful and almost restorative, yet most of us clamour for the participation of others closest to us when decorating a Christmas tree. Together we completed the task despite heroic efforts in trying to affix the star at the top which decided it was not the star for the job!
As we built the gingerbread house, Matt assisted with his engineering prowess (after all he has a B.A. in Social Sciences lol) but left the construction to us. It was delightful to have the building come together and have Ella wear the 'white hat', leading the way in architectural design. Oh my, I just realized I didn't take a photo of the final product to share with you. Oh well, I leave it to your imagination to see it with your mind's eye. Matt's comment as I was leaving summed up the afternoon we shared 'It's the most Christmas spirit I've seen since leaving home.' I couldn't agree more as he and Jaclyn settle into their married life together.
Today is the 27th birthday of my favourite identical twin sisters, Michelle and Paige Kasaboski and tomorrow is Michelle's second Christmas concert, this year at the Grand Theatre. She not only has a beautiful voice, a bit like Karen Carpenter, she plays music and has written a number of songs. Sister Paige is the Producer to Michelle's lead on vocals and tomorrow will definitely be a highlight in sparking the festive season. A number of years ago I was asked to be their sponsor for Confirmation in the Catholic Church. During the ceremony, as the candidates line up to be confirmed, the sponsor stands behind with a hand on their shoulder. As the Bishop confirmed one of the twins and moved to the next, I too moved to the next. With a twinkle in his eye, his Grace looked at me to say 'Oh, you're doing double duty today'. I agreed and have been privileged to know these girls and their older sister since they were about 8 years old and watch them grow and mature into lovely young women.
I will leave you with a wish for you and yours to enjoy the next couple of weeks with family and friends. May you share with one another a deep sense of loving community, whatever your circumstances. I wish you good health and peace in your heart. I know the end to our year is better the more we let God take charge - for a change. All the very best and I hope to be back on New Year's Eve.
Take care, hugs, God Bless, and Merry Christmas
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."
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