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."
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