Well let me tell you it's been an interesting time since I last spoke to you, by the written word of course. I started chemo on March 2nd - more of an update on that shortly, a homily from our Deacon who also happens to be on chemo that has given me an aha moment when it comes to why we give things up for Lent and sort of finally, a notice that I hadn't gotten permission from the creator of an image I copied from Google and had used in a post. Hence, no pictures this time, but hopefully by next post, I will have attended at least one self study class and figured out how to relatively efficiently do the credit piece along with the image capture. You may know by now that I have a natural tendency to make things more complicated than they may need be!
Oh me, oh my, just when I thought I was a little bit caught up and could coast along the river, I feel like I caught in the Niagara rapids not really knowing which way to turn and wondering if the future would require me to defy the odds and go wildly tumbling down the falls in no more than a wooden barrel. One of my greatest learnings since starting on these adventures is that the level of stress I can manage (successfully) is close to nil. Maybe I say that because my entire being is dealing with a fair bit of stress so it's not how much I can tolerate but rather how much MORE I can tolerate. Hey, I hadn't thought of it that way until just now when sharing this thought with you. Hmmmm, maybe my tolerance meter is actually much greater than I had ever given it credit for especially as I ponder the numerous comments I've received about how seemingly calm I've been in dealing with my situation. That insight is going to have my brain create yet another new path to explore, luggage to unpack taking only what's absolutely necessary to ensure I have the space to stay open to what might reveal itself on the journey.
I must share with you one of the greatest blessings of being thrown into the unknown with the full knowledge of being totally out of control on this one. That is, I have the priceless opportunity to just 'be' and allow myself the time and freedom to travel to places in my heart and mind that make up the 'authentic me' and not just the day to day facade that I think others see. You know, living a life that's successful as a result of the belief that if one just does enough, leads, I think, to what might be known as 'imposter syndrome'. During a counselling session a number of years ago, this theory was suggested to me and it was shared in terms of an airline pilot who was highly successful, knew the role inside out and yet felt totally inadequate about their own performance. I'm going to leave that thought for a few minutes and provide an update on the medical front for those who really only want that update and not all the other mental wanderings that seem to take hold of these posts. As I've said before, those are the 'Dragnet' (TV show from the '60's) readers - 'give me the facts ma'am, just the facts.'
I started chemo as mentioned in my last post, on March 2nd and have now had three weekly treatments. I can now enjoy a week off before starting the next round of three weekly treatments. After three such cycles of three weekly treatments, a review will be done to determine the effectiveness of the chemo. When this was all coming together, needless to say I was a little obsessed with the whole thing, much like a vinyl album that was skipping and repeating the same few words and bars of music over and over until someone manually gave it a slight nudge to keep it on track. Well I started nudging my brain by replacing the 'skip and repeat' with mentally singing Psalm refrains consciously, over and over and over. The easiest one of course is "This is the day the Lord has made, let us rejoice and be glad". Another that could be used less frequently or at least I find, is "Be with me Lord when I am in trouble, be with me Lord I pray". I say less frequently because I don't want to brand my brain with the fact that I might be in trouble. It's way to important to keep looking for the growth opportunity in all this which I will share shortly.
Chemo has gone rather uneventfully although a different after effect experience in each of the three weeks. First week, fabulous snooze when I got home day of, next day felt great and very active, then slept most of the Saturday away. Second week felt ok coming home, no need to sleep and next day was so active I thought, wow I feel like the energizer bunny - on steroids - and then thought, hey wait a minute, I am on steroids. Prior to receiving the chemo drug, I get three smaller doses of drugs to manage the side effects which include a stomach drug, a steroid (hmmm) and Benadryl which has the oppose effect on me than putting me to sleep. After round 1 I asked about the protocol for post treatment which, from memory, was fairly specific and allowed me to get through the experience pretty much unfazed. This time I was prescribed an anti nausea drug that I was to take as needed which meant that I now had to treat symptoms rather than prevent them. What's that all about I asked and did request more specific directions. I'm not sure I understood the answer correctly or fully as I don't want to be putting words in the mouths of my care team. What I thought I heard was that Cancer Care Ontario deemed that too many post treatment anti symptom medications were being provided thereby changing the protocol to this new plan. Needless to say not everyone was in agreement and I received a prescription for another, well known anti nausea drug to take evening after treatment and next morning. Week two though left me more queasy than I expected and I only got to the pool once. Week three, chemo was yesterday and I was wide awake until 3 a.m. after which I only dozed fitfully, was up by 6 a.m. and not feeling nearly as alert and energetic as last week.
After two more such cycles, there will be an assessment of some kind to determine if the chemo is working and if so, how well. In the meantime I am now 'off' until March 30th when round two begins.
At the Week 2 mark we also decided we needed to make a decision if we were going to carry through with our plan to go to Isla Mejeres, a tiny island off the coast of Cancun on April 2nd through to April 10th with our eldest stepdaughter Krista and her husband Mike Jones. Yes, you read it correctly, Mike Jones. You see Krista Dobbs married Mike Jones a year before Liz Dobbs married Mike Jones. No relation and we've always laughed about how much fun we would have if we were to ever to travel together. My intrigue came from the fact that they have been to this tiny island at least four times previously as has my former colleague Denise who has been there I believe at least 2-3 times. What's the draw I've wondered and so we booked late last summer. Sadly today, I made the final calls to cancel our trip although Krista and Mike will continue on and see this attractive little place for the fifth time. It sounds like the place is perhaps just a little further than going to Wolfe Island which we are all familiar with at this end of the province. A direct flight from T.O. to Cancun, a drive across the city and a 20-30 minute ferry ride to the island which does have a walk in clinic.
With the recent adventures and the re-entry to 'poison alley' of Chemoland, I know I would worry from the time we left the house to our return. Before even sorting out the convoluted flight, drive and ferry in the event of having to return, how do you even begin trying to get to Neverland? Do I need a wheelchair (yuk) to get through the airport? I guess probably but then a bonus would likely be to get pre boarding. Oh ya, but then I likely would need to wear a mask on the flight because I'd be right in the middle of chem. But wait a minute, since I've had blood clots, do I have to wear compression stockings even though I'm on heavy duty blood thinners? I'm already exhausted and that's only a few things that came top of mind. I'd probably have to go through some check list that in and of itself would scare me off the plane!
Ah, wait one more minute, I received a 'Fever Card' with instructions with an opening message 'This may be a Medical EMERGENCY', when first starting the truly toxic drip. On the way to treatment yesterday I realized that I had forgotten the verbal instructions and have not been taking my temperature on any regular basis.
If you've heard of this, humour me in sharing the Patient Instructions:
If your temperature is 38.3C (100.9F) or more or 38.0 (100.4F) for over an hour - Go to your nearest Emergency Department. Make sure to bring this card and a written list of all your medication with you. That's it! That's all.
Included on the reverse are instructions for the emergency department staff that I'm not sure unless I went to nursing or medical school for several years!
Imagine deciding to go to a tiny island with that card in your travel documents! Even with the understanding that it's in close proximity to the trip to Wolfe Island, I'm not sure I'd spend 8 days off the Kingston mainland! City girl I must admit that I am.
To close the medical update, I haven't started losing my hair yet and was told I may not lose all of it this time, it might just thin out, which, in my case, might as well get lost! I looked at photos from 2012 and there is one that's actually sort of a Sinead O'Connor look which I think I might dare to wear. Maggie has been doing some retirement packing and I'm so thrilled to say I've lost 18 pounds since my all time high in July. I must confess that I tried so desperately hard to accept the Pillsbury Dough Girl look, it wreaked havoc with me in a number of ways, most of all the difficulty of carrying an extra 80 pounds on a 120 pound frame. My shortness of breath has improved dramatically and part of that I attribute to the weight loss. In a recent phone conversation with my dear friend Martha who lost her son Tim last summer at age 39 (whose story is in a previous post) continues working through her own grief which, I've learned from experience, must be done in your own time and in your own way.
I surprised myself during our conversation when I told her that I have nothing to complain about - and meant it. I'm not sure what happened but to speak the words out loud and have them come back into my own ears created some sort of uplifting feeling that felt like it penetrated my soul.
The Deacon of our church, Phil Carney, is also going through chemo right now and shared his last homily in writing as the side effects kept him from 'preaching from the pulpit'. My aha moment from the written word was that Lent is a time of conversion which can only happen on the inside of us and, contrary to my comments of a couple of posts ago, where I thought we might become too inwardly focused, it's actually a time to start cleaning up our own internal act. He shared words of Pope Francis for this Lenten season. He said that God desires mercy, not sacrifice, and he said "Let us not waste this season of Lent, so favourable a time for conversion". Throughout our lives, and mine for sure we lose track of what we are being offered by God and convince ourselves that we can find our own happiness. That's why we need conversion. As Phil says, the need for the season of Lent is to allow us to focus us back on what this God who loves us so much has done for us.
A popular Lenten story is of the blind man healed by Jesus and restoring his sight. It's a way to look at what Jesus did - He used mud and saliva to perform the healing miracle. It's also to see the reaction to what was done - the man who was healed of his blindness, saw what had happened, tried to explain it to the Pharisees, and finally accepted Jesus: "Lord, I believe." Conversion!
It seems the more we can allow the possibilities into our own lives, the more open we are to what could happen, the greater the probability of being blessed in ways we've never dreamed of. My friend Tess and I were discussing the concept of miracles in our modern world and we agreed that the more open we can stay, the more opportunity exists for one to come our way. My own feeling though is the challenge of remaining open which challenges me to accept vulnerability and expose it to the light ever so gingerly, ever so carefully, always with a deep sense of snatching it back and hiding it beneath the facade that I have built much of my life on. That facade I mentioned earlier that so many of us build up to convince us of our worth, to show the world that we can do many things successfully but often for the wrong reason which is what causes so much internal turmoil.
During a recent three night course at the church called Priests, Prophets and Kings I learned that a worldy god or idol can be honour which opened my eyes to this lifelong practice of 'doing' to be considered worthy. No wonder the success has so often felt hollow, the recognition and praise empty because it was being bestowed and received for the wrong reason. It was a practice of chasing external honour to counteract the internal sense of unworthiness. Oh, so many years of running doing what everyone else wants done, losing your identity along the way and wondering who is really the authentic person inside this high strung, ever so energetic perpetually smiling bundle of energy. Except on the home front of course when recharging that Eveready Battery for the next round of activity. I remember once saying to my son Matt "If I seem cranky, please understand it's nothing you've done, I'm just very tired". Once, much later he challenged me by asking if I was tired which was a great way to let me know that Miss Cranky was present and be counted!
On to my final subject before signing off as I wonder what I might write about every two weeks only to sit down after praying to the Holy Spirit and before I know it, the post is written, the pictures added which takes longer than writing the blog and now I've learned I have to go to 'Blog School'. I do recall shortly after I started that I really must look further into some of the tools that are offered and read up on it. Recently there was an article about the need to get permission before using images on the internet which I wasn't doing primarily because I had no idea how. As time passed, I just kept adding images that I thought would fit the theme and out of the blue got an email from someone whose drawing I used chastising me for lack of credit while suggesting that they typically would charge for such use. While I may sound cranky on how I'm sharing this information, I really am not because it's through such communication that action is taken. I have since figured out at least how to give credit - there's a little comment with a website by each image that can be copied into a space below the image which allows for a comment. Ok well, that takes care of some of the stress. I also got some notice from the European Union about using content and them putting some courtesy comment on my blog. Imagine that, my little personal blog about nothing political, financial, international being reviewed by the EU!!!! I should be flattered rather than feeling scattered! I was going to publish this post without pictures but decided that I can, at least this time, put the credit below each image and see if I happen to get any further feedback from Cyberspace. But now that it's after 6 pm, I have figured out it's not as easy as I thought so am publishing without images.
I'll close with a little reverse story on how 'open' the internet really is. In order to protect privacy this will come across a little conceptual but I'm sure you'll get the point. Recently Mike was in contact with someone out and all that was provided was the person's cell phone numbers. Period. The other day the information of the was somewhere on Mike's Facebook. I have no idea where or really what all was there because as you know I don't 'do' Facebook. The point is one wonders who is out there looking at our information, how they are cross referencing personal data about us and others we come into contact with and what is actually being done with the information. Oh, too much for me to think about. Too far above the stress meter.
Here we are, another memorable day to be honoured, St. Patrick's Day. So I will close with wishing you all the best whatever you may be doing, if you're celebrating, and will be back in contact at the end of March. I'm off treatments now until the 30th so will try to write before, or, actually the 31st might be better as it's been the day that I've been super-charged.
Take care, God Bless and have a good couple of weeks,
Hugs
Liz
dobbsjones@gmail.com
"Prayers that are sent with faith and wrapped in love are the greatest gifts we can receive."
