Ok, the title of this post might sound strange, but let me tell you, the last couple of weeks have been the source of several paths that one might take while exploring the netherlands of these latest rabbit holes. I recall a book I read faithfully for several years, The Language of Letting Go by Melodie Beattie that included daily inspirational messages. One in particular was about life handing you nothing but manure and your response to dealing with it. One option was to keep wallowing in it, while the recommended option was to grab a shovel, turn it over and turn the manure into fertilizer to produce new, fertile growth in your life. That has stuck to me ever since, I suppose like manure can, causing me to think about it when feeling down and out. Just as this blog period was coming to a close, it's like the fertilizer of late has been stuffed into planters all around me and exploding into almost an instant garden of promise with faith bursting through to the sun. No need for darkness at this point, just bright blazing glory and thanks to God! What a welcoming image of spring to fill our hearts.
What is this all about you may be asking yourself. Well at the beginning of April we managed to squeeze four activities into one day - I must still have been wearing off the residual steroid effect from the Wednesday treatment. The emerging trend though is to jump on the back of the Energizer Bunny on steroids and push through, while pulling in any outstanding items on my to do list while I have the energy. The down side of that of course is that when Saturday arrives, I crash and burn spending the weekend on the couch rather than stockpiling at least a little bit of that energy for the days to come. Last week that was the intended effort, or at least an attempt. Thursday was down to two activities and Friday, only the drive with a friend to Pickering for a silent weekend retreat at Manresa, a Spiritual Centre centred around the teaching of Ignatian Spirituality which I've touched on in previous posts. And yes, believe it or not, I can remain speechless for almost a full weekend. Back to the retreat shortly though, as I need to provide the medical update.
A special blood test, called CA125 can be done to determine if drug protocols are having the desired effect during the course of treatment. Why punish someone with a longer treatment cycle if there is a means to measure and not prolong the experience if not having the intended results. The common name for the test is a Tumour Marker and is correlates with the disease activity. The higher the number, the less effective the outcome. As the number decreases, the better potential outcome. The actual numbers don't mean nearly as much as the trend. Apparently I had such a test done at the beginning of March - one of those vials of blood they poke and prod me for each week the day before treatment included this special CA125. At that point it was 1042. By the time another was ordered at the beginning of April, it had reduced by 50% to 511. Ok, let's keep that shovel and pitchfork in hand to keep turning the bad over - and out! The greater fireworks came this week when I received a phone call at home to say it had decreased this past week to 309. Yay! As Jan, the nurse practitioner who called, said 'It's about time you received some good news'. The tumour marker is typically checked after 3 cycles of treatment and I didn't ask who or why it was decided that I would once again be that odd ball case that experiences an 'off the beaten track' means of followup.
All that I have known or heard to this point was that after 3 cycles (of 3 weeks treatment followed by a week off), a tumour marker would have been done to determine effectiveness of treatment. Why I was chosen to have a test done after 1 treatment in cycle 2, who knows, but I thank God and whoever medically decided it should be done. It sure makes the experience much more worthwhile. The overall protocol of this treatment is normally to go 6 full cycles or 18 treatments with a week off at the end of each cycle. After 3 they may decide to just keep going or plan a cat scan during the 'off week' after 3 cycles.
It appears that I have been doing remarkably well and responding well to the chemo which may affect the decision to do another cat scan in four weeks or so. The most important thing to determine is what will be done with the result. If nothing, there is no point to ordering the test. Is the outcome going to change what we are doing? In my case, if we continue on such a positive path, they may decide to continue doing the tumour marker test and head into the second half of cycling. Oh my, I almost feel like I'm trying to do the Tour de France through these recent rabbit warrens. Maybe even on a unicycle rather than a regular bike!
The protocol we're following, I've just learned, has research supporting the treatment - after all, why would I think any differently? Apparently after 6 cycles, the bone marrow weakens and is not easily built back up. Because of the potential negative side effect, either way a break will be taken should we complete the full 6 cycles.
My choice is not to project too far beyond mid June, let the medical team collaborate and determine what's best in next steps of managing my illness and leave the rest in God's hands.
These last couple of weeks have also included some changing of medications to try to achieve a more stable system of managing pain that comes with chemo, like achey bones and weary muscles. The other is then to manage the side effects of the pain meds which, being a narcotic, presents its own challenges to the body's 'evacuation system'. I once discovered at our beloved, chosen family, Laithwaite's Apple Park Farm on Lake Huron, an endless array of large, commercial size medicine bottles which were apparently stored while a drug store moved premises, only to never be picked up again. The date on one of the bottles, I believe, was circa 1932. It still had a tiny residual amount of mineral oil at the bottom with a label affixed to the side that advertised its ability 'ease evacuation'. I couldn't help but think 'What a civilized description of a bodily function!' Clearly, assistance in bodily functions is nothing new and we continue to try to achieve maximum performance through all circumstances. Need I say more on that subject? Not there yet but working on it!
The hair thing continues to keep me in somewhat of a state of wonder as to why it is so much easier this time to go out in public without the beautifully stylish wig which remains at my finger tips. Yesterday I pondered whether it's sort of old news now, whereas in 2012, I had gone in for a routine procedure that turned into anything but and that the following months turned into a critical period of maintaining some sense of normal and what used to be. In many ways, it's a grieving period, giving up what was without knowing what's coming. Much like the unknown being faced during the loss of a loved one. Another 'thought drop' at this moment is about the experience I've gone through with people I've know for 30+ years not recognizing me and walking right past without a second glance. Perhaps the physical change during Maggie's time with me 'trumped' losing my hair. People didn't recognize me with our without hair, so who cares!? Maybe it's that I've accepted what is, not knowing what's to come, and to more seriously 'lighten up' about the whole thing. We've teased at church that we are imitating one another's hair styles - Father Leo, Deacon Carney (also going through chemo) and myself - to the point of starting to take photos for posterity!
On Wednesday as we entered the Cancer Centre quite a breeze was blowing, as it usually does, at the front entrance. A volunteer, smiling pleasantly on the other side of the entrance, was watching our entrance to which I responded, 'Oh I'd better fix my hair' and proceeded to pat down the wispy remains of my baby fine fuzz. After checking in, I paused at her table to let her know I was going upstairs for my weekly styling. Maybe I'm just getting comfortable with the direction that God is leading me in, including my usual wacky sense of humour.
A further thought on a comment from last time, about my two professional counsellors also diagnosed with serious cases of cancer and about how I somehow had a feeling that for all of us, the experience was one of a graduation of sorts. It's almost like when we reach a fork in the road of life, if we can't make our own decision(s) about what to do next, it will be made for us. Our challenge of course is to accept with gratitude whatever comes our way rather than becoming frustrated at not getting what we want. It's important to remember that God gives us what we need - not necessarily what we want - but He always does answer our prayers. From the writings and discussions with these two individuals, it's clear how well they are embracing their situation and projecting a deep, faith based approach to what we are going through. One even said they feel like the last 25 years of counselling (primarily cancer patients) was all in preparation for this time of life. How profound is that?
During a very quiet and reverent period on Monday evenings our parish holds an Exposition of the Blessed Sacrament, where we are invited to come and pray to the Holy Spirit for the future of our parish and our own lives. On one such evening Father Leo dropped by where I was sitting to ask, in a very hushed voice how I was doing and, as is usual, I asked in return the same question. His reply was that he wants to spend whatever years he has left helping others, helping the suffering but admitted he struggles with not knowing 'how to do it'. Does that comment surprise you as much as it did me? Yet, without hesitation and knowing full well that the following words were those of the Holy Spirit, I simply replied 'You don't have to know how to do it'. In my mind it was clear that if he was willing to be God's Hands on earth, and open to doing His work while here, the way would become clear. Father Leo acknowledged this truth as he got up to leave, and turned back with a smile as bright as a noon day sun and simply said 'Thanks'. My old paradigm, and possibly yours is that doctors used to be like God, never to be questioned, well how much deeper does that belief run when you think about a priest? After all, he is one of God's representatives on earth. What are the chances that one would even dare to offer a suggestion to one of these guys? It may though, be a sign of how things are changing and evolving in our churches.
When we really pause and think about Jesus and the kind of life he was born into, it helps to strip away the facades that so many of us think we have to put up to face the world. As I was pondering this, I couldn't help but think of Nik Wallenda of the 'Flying Wallendas', something like 7 generations of tight rope walkers, usually in a circus setting with flamboyant costumes and the like. Any other show type performers also appear with all the glitter and glamour. But not this guy. No safety belts or harnesses, no fancy costumes to create an exterior facade. Nope, none of that - just homemake deerskin boots (yes made by mom), jeans and a t-shirt. Even for the epic walk across Niagara Falls, with only a balance beam to hold him steady as he traversed heights never done before by hum as using a tightrope and pockets full of faith, knowing God is overseeing his efforts and is the true director of the outcome.
If we are living true, authentic lives, which would you choose?
If Jesus were here among us - which many may believe he is, which would He choose given what we know about his life 2000 years ago? It's not hard to figure out when we read the Gospels of his relatively short public life of preaching - all of 3 years.
His life was truly in God's Hands, willingly taking on what was asked of Him - give up your life to heal the wounds created by sin of humankind - as a measure of God's love for us.
As a measure of my own wellness I am staying open to whatever God has for me to do with whatever time I have yet to help Him out including being the best me I can be. It can be too easy to slide into a state of self pity and wallow in everything that is wrong in my life. Nope - no time for that although I must confess, being only human, there are periods where we need to just feel what we're going to feel.
My trips to the pool at the Y have decreased considerably but the best part was that while sitting here on the couch, getting used to the after effects of chemo and admitting there really are some, I imagined the joy I get from simply walking in the water, gently coaxing these achey muscles and bones to try, just try, to move a little more because it will help.
The day that I ended up having a sleepover at KGH it was a ride from a new Y friend Emelia and her husband Mike. In the interim, the staff of the Y were most helpful and compassionate toward my needs. One of the few times I had to admit I was not ok. I met up with one of those folks, a fitness instructor Michelle Moore. She shared with me how she works at the Y and has a dream to open her own personal training and group fitness business. While I only know Michelle from my few instances of seeing her in the change room and having her help me in a time of need, I offered to share her dream. I have no idea what any outcomes would be but the natural 'connector' in me puts things out there and the rest is up to whoever happens to connect. If you know of anyone with interest or wanting more information please contact Michelle at mvmoorebhf40@gmail.com or call 613-876-3272.
Don't worry, this blog will never take on being a site for advertising, that's not what this is about, it's simply caring people sharing with other caring people and leaving the rest in God's Hands. Before I may have to gently shake you to wake you up after such a long session, I will take my leave and get ready for my date with the pool at noon.
Take care, hope you and yours are well and may we all go out and enjoy what promises to be a fabulous weekend!
God Bless and hugs,
Liz
dobbsjones@gmail.com
'Prayers wrapped in faith and sent with love are the greatest gifts we can receive'.
p.s. No openings at blog school this past little while. Will try again over next couple of weeks.
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