For once I took the time to write down, in detail, my adventure from our last night in Halifax, the physical pain and how I dealt with it. Pain here, pain there, shifting, throbbing, piercing, abdominal, around the back, generally in the midsection. Took hydromorphone when Tramacet; didn't do much but provide a dull ache. Aha, mistake number one as I found out on a subsequent visit to my 'symptom doctor', a breakthrough using hydromorphone is to be used in addition to regular pain meds, not in place of! Oops, maybe pain dulled my brain cells too? No wonder I had difficulty managing the pain let alone getting ahead of it. You'd think by this stage of the game I'd be well versed in all these details but obviously not. I was going to say embarrassingly not, but a good thing is I don't feel embarrassed at all, and ok with a firm review and guide for the future.
When my oncologist entered the exam room he looked at me almost with surprise, I think expecting me to look half dead or doubled over or something. His first remark was if the pain I'd experienced during our trip was due to disease, it would not have been relieved, it would get worse. Hey, there's a good sign since it has eased dramatically since coming home.
His summary was I look too well to do anything and he's not prepared to put me on chemo or do any testing even to establish a new baseline. And here we are at the centre of the spokes of the wheel. The wheel of life goes round and round, sometimes fast, sometimes slow, sometimes so slow you feel you might tip over but catching your balance and continuing on. At the centre is the reality of living with a chronic illness. There is a mass in my abdomen, made up of who knows what, some dead tissue perhaps, some tumour cells, maybe growing, maybe not, but since 2013, deemed not medically curable. It's there and regardless of what it might be doing, the principle measure is how I am feeling.
After a short physical exam poking and prodding my belly and ribs, he didn't think the mass had increased in size. His instruction - carry on and react only to symptoms, not to results of medical reports, so no tests either. When the day comes I cannot enjoy quality of life due to physical symptoms, we'll consider chemo. This further reminder causes the smallest of shifts in my mental paradigm. It goes like this, 'I feel well today. In the absence of the information from the last six years, would I be making an appointment with my family doc for how I'm feeling today? No. Well then, who's to say there's anything wrong with me? I am not limited in my activity or diet. Sure I feel more tired at 61 than I did at 55 (when I was diagnosed), but isn't that normal as we age? Let's continue to age gracefully by accepting our limitations and living life well every day. Next followup? Just before Thanksgiving. Good time to recharge my batteries of hope and optimism.
Another observation of a shift in my own reaction to things was when my doc told me both of the Gyney Oncologists I've been dealing with for the last number of years are leaving, or have left, the hospital to pursue other opportunities. My old reactions of fear and panic didn't crowd out my rational thought. What a welcome change! You might wonder how I did react. It was by confirming to the Medical Oncologist I'm being treated by how I believe God puts the doctors we need in front of us and we don't need to waste precious time and energy seeking second or third opinions. My conscious reaction was a calm thought "I guess I don't need those doctors anymore." How liberating is that?!
Interestingly at the appointment with my symptom doctor the following week, I was advised there may be a change in protocol where long term patients (whatever that means and I didn't think to ask) will be referred back to their family doctor for ongoing monitoring. Again, no fear, no panic, even though we've developed a very good relationship. I understand the system is always changing to streamline care, make it more efficient and, let's face it, save money. The optimist in me sees this as almost an advancement in the area of cancer care; people are living much longer with the disease and if resources can be freed up to provide better care for those much further along the path of their illness, then so be it. In my case, I have the epitome of good care. My family doctor is the best I've ever had. She willingly sees me every 6-8 weeks for a check in. When looking at the big picture, if I am truly stable in my illness, do I really need three doctors recharging me with the same news? Not when there are people who have difficulty getting the care and attention of one doctor! My experience has been, when I really, really need care, it's there so I'm prepared to give so others can at least get.
Last week at daily Mass, a friend who regularly sits in front of me showed me a little caption in her daily Mass readings book which caused her to think of me. She promised to save it for me at the end of August as the books are printed a month at a time by the 'Living with Christ' organization. It was certainly thought provoking. By the end of Mass, she simply tore the page out of her book, turned around and handed it to me. Why not she said, she had no further need of it and it was clearly for me (in her mind anyway).
"Accept your illness as a sign of God's special love for you. It is a sign that you have come so close to Him that He can draw you to Himself on the cross. It is no longer you suffering but Christ suffering in you." St. Teresa of Kolkata
I'm guessing you may have found it as powerful as I did and have reread it and shared it with others.
As I review my self directed goal of maintaining a good exercise routine, of late I'm so far behind I think I'm ahead. Since returning from the east coast, I've been spotty at best in getting to the pool either at the Y or even at my friend Carol Ann's heated outdoor pool. Well maybe not so much because when we enjoy the outdoor pool, it's usually for a couple hours at a time. Suffice it to say my routine has not been so routine and my goal for September and beyond is to renew the daily pool walk. The heat of the days has been such that any thought of walking outdoors during the daytime has remained just that, a thought.
Something which has come to my attention at least twice just recently is how we have become so detached and insulated from the earth. As I watched a video and read an article it occurred to me how true it is. When is the last time you were outside, connected to the ground, in your bare feet? Not on the deck, not wearing shoes but really standing on the grass like you did as a kid? One of the pieces talked of the electro magnetic fields of the earth and how we too are electrical beings. While there's lots of hype and sales talk to get you to buy some 'earth like' product, I believe there's something to just getting back to nature. I've been trying to deliberately get out there, sink my non calloused, tender feet in the green grass to simply feel the feeling. Given how much free time I have in a day, I've been pondering how little I've been devoting to what could be another form of recharging. Hmmm, I plan to make an effort every day to get out there for at least a short while. When I sat out the other evening on a lawn chair on the actual lawn, I couldn't help but wonder if the fact of me listening to a talk on my iPad neutralized any benefit gained through my feet. Aren't you glad you don't have to live in my brain??????
I'm going to finish up by sharing a story from another three day course I took through the Church called Cursillo (pronounced Kur-seo). It's a time of reflecting on our goals or ideals in life, better define them and creating a framework by which we can carry out our life's work in a deliberate Christian fashion. That description is mine which, in a nutshell, is what I got out of the course. If you're curious to learn more simply click on Cursillo . Having worked 35 years in the corporate world I learned much about myself and my work style. I've always had fun brainstorming ideas using creativity and even humour to set new goals. At the other end, I became well trained in being results oriented by carrying out activities which would promise success. What my ongoing challenge seemed to be, was creating the framework by which to execute the plan. As an intuitive, my brain automatically sees the big picture without much concern about how we're going to get there from here. Hey, we'll just figure it out along the way. Not so in the real world. As they say 'fail to plan, plan to fail.' We were being provided with a well defined framework.
What this course did for me was help define my ideal, or mission, for the balance of my life here on earth. And by definition, where I will spend my time, energy and resources. My corporate life is over but it's taken me six years to come to the realization I can accept it's over, embrace the training and learning I've received during all those years and stand ready for the rest of my life. What does the 'rest' look like? A simple life of being good by doing good, being open to the gentle nudges of God through Holy Spirit to act - or not - which was my biggest learning of the weekend.
You've read many times how I've been practicing letting go, slowing down, decreasing my activity, not jumping in at every opportunity. Yeah, yeah, yeah. What is different with this experience is I've been gifted with a framework of just how to carry out the ideals of my life without jumping feet first into every interesting opportunity that comes along. It can help keep me on track to focus on the good things without getting sidetracked by all the 'shiny things' along the way.
On arrival at the course (all women) we were put into preselected groups with an identified secretary and table head. And guess what? Yup, table head assigned to me! Oh boy. My role was to simply keep us on track, allow all participants a turn to speak. Piece of cake, done this for years, hands down. Without going into detail, while I got through Friday, by the end of the day, I was an overwhelmed sobbing heap in the chapel. More to come on that,
During one of the talks one of our groups did an illustration which, among other things, presented how we are to be true 'human beings' vs. 'human doings'. Notice the 'dew' on the grass which is tiny in comparison to the large 'bee'. I didn't really pay too much attention to it at the time other than agree it was a cute way of showing us the difference. My full attention and focus was on 'getting the job done' with six other table participants who all had their own thoughts and views on how to proceed. Yes, I can facilitate discussion and make sure everyone has their chance for input but, for some reason, in this case my old shadow self came out in full colour, driven from a long ago place of fear, of not 'bee-ing' good enough and in compensation, having to 'do' enough to be accepted. For me it was all work, work, work, get it done, no time for play until the work is done. Oh my, I can just imagine what the members of my group thought of this control freak!
In many ways it was a wonderful experience given everyone was in attendance with the same goal in mind of becoming better Christians and spreading the word of the Gospel each in our own way. God had an entirely different plan for me, little did I know.
In my room at the end of the day still overwhelmed, realizing I simply couldn't do two more days of being table head. At breakfast the next morning I happened to sit with a member of the organizing team with whom I shared my feelings. On giving her context by sharing the last three months of my life, she simply put her hand on mine and told me to speak to the team member from my table and tell her I couldn't carry on. Well, I can tell you now, it was probably the most difficult thing I have done in over 25 years! To say the words, out loud, to another person, "I can't do this".
In the meantime, early on in the day I was given a card in a sealed envelope. It happened to be from my dear friend Sister Patricia Ann who lives at the Motherhouse which houses the Spirituality Centre where our course was being held. I carried that card around all day long, from table to chapel, to lunch, to table, to dinner, to table, even all the way back to my room at bedtime. It was only then I opened her card. What it said inside isn't my message here. It's the photo on the front of the card.
The feeling was so profound and remains so even today, I now have a visual for discernment each and every time choices are in front of me. For example, at the end of the course we had a wonderful graduation ceremony attended by previous course attendees and family and supporters of the course. We were invited to share a testimony of what the weekend meant to us. Normally I would jump at the chance. Not then. Consciously and deliberately I sat quietly in my seat listening to the stories of others.
In the last couple of weeks I have been working hard, talking things through with Mike, on what to do and what to leave alone. Another example; an invite came through for a leadership team meeting for an upcoming course at our church. Taking a deep breath, I replied confirming I will be taking the course but not taking on a leadership role. Whew, did it again!
Our son Matt and his wife Jaclyn were moving during August so of course I was all revved up to jump in as needed to organize, coordinate, and yes, subliminally control the move. Another deep breath, turned it over to them, helped pack for a couple of hours and showed up on moving day as a cheerleader. Oh man, look at that! It got done. Ella and I had great fun the day a new sofa was delivered. We got to take all the packaging and play a game of folding up the plastic and cardboard to have it all fit in two large plastic bags (much smaller than garbage bags) then leave it there for them to dispose of. Hey, there's something to be said for this standing back and JUST BEE-ING.
The summary of this whole experience is to fully recognize and accept, my old life is over, my new life just begun and I must change my ways in order to clear the path for what's coming my way. There is no longer room for a frightened little girl to over achieve, over function and over control everything, even those things not within her control. There is only room to accept God's will in my life and remain open to the surprises He is sure to bring my way as I follow His lead.
On that note, I take another deep breath and thank you for letting me dare to just let all this flow. As I may have mentioned before, at the beginning of each post I invite Holy Spirit to do His work through me in order to share messages with those who are reading and may benefit in their own way from what He has to say.
Until next time, take care, God Bless and Just Bee,
Hugs,
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."
