Welcome to summer! This year's summer solstice also boasting a 'strawberry moon' which won't be visible again for another 50 to 70 years, long past my expiry date! In between the start of summer early in the evening of June 20th and the glowing moon, a severe weather watch flashed across our TV screen including the possibility of tornadoes! Oh my, I was feeling much like Dorothy from the Wizard of Oz although no need to click my heels together to get back home. Rather, just a curious look outside to see the wind whipping and the rain pouring, bringing much needed nourishment to thirsty plants and flowers. Maybe this is the experience that has brought some of my pondering thoughts to the surface that I will share momentarily.
The next day, June 21st another visit with my oncologist who provided an update:
All bloodwork for chemo was ok meaning round 5a would proceed the next day.
Weight was 166 which is ok since I am now definitely starting to feel the difference with 35 pounds gone. As is, I'm sure, my heart and lungs.
The most exciting news is that my CA125 as of June 7th was 52! Remember how it started at the beginning of March at 1064 when the 'normal' person has a count of 35 or less? Wow!!! Keep in mind though, it's the trend, not the exact number that's important. That's what I keep telling myself.
I have developed some neuropathy in my feet and maybe hands. (Sort of loss of feeling). What I learned is that despite still having feeling in my feet, it's like my toes are somewhat swollen and I'm walking on 'pads' which affects one's overall sense of balance leaving me feeling unsteady on my feet when I first get up. Now that I better understand this strange sensation I can make a mental check on my list of side effects. One of the best ways to manage this is to walk. Ok, that's within my sphere of influence, so whether I walk in the pool or on land, I will keep walking. The rest I can accept.
We confirmed that we will complete 6 cycles ending the first week of August and then keep monitoring by the numbers after that. Should further treatment be required, we'll explore the options at that time. In between, I will continue to focus my energies on optimizing my state of health, which is Job 1 these days.
I asked if immunotherapy is being used in clinical trials for my type of CA. It is, but in my doc's cautious and reserved way, she advised that we don't know if I would be a candidate. There are numerous screening tests that must be applied with a full review of any potential candidate's medical file. Any single, seemingly small find can affect whether the patient is eligible. As well, since the current therapy is working so well, a clinical trial would not be considered right now. It will be kept in mind though as time goes on. In summary, my inquiry was just that, something potentially to be considered in future, to be put on my giant whiteboard and weaved into the greater picture if and as time, need and interests arise. I can accept that.
Without going into a full description of what immunotherapy consists of, not that I could anyway because often the details escape me, it's about boosting the immune system, I believe through drug therapy, to ramp up its ability to focus on and only kill the bad cells and leave the healthy ones alone. This, as compared to chemotherapy, which strips the body's entire system of all fact growing cells, hence the hair loss, nausea, and other disagreeable side effects. All good to know and my physician is most pleased with the progress we're making. I'm sure even for them, it must be most satisfying when they can see positive outcomes from their efforts of using their training, education and experience.
Now back to the pondering I mentioned at the start of this post. I've been thinking back on how four years ago I was going through the midst of various medical tests, much the same as so many other people, trying to keep on top of the areas of my health over which I had some influence. To this day, I thank my friend Brenda for 'pushing me' to see my doctor about a vague pain in my lower abdomen. Nothing specific, nothing scary or frightening, as is the case with how a cancer diagnoses can suddenly mushroom like an atomic bomb in the midst of an ordinary, everyday life often accompanied with minor aches and pains. This led me to consider how traumatic the loss of my hair was at the time. After all, hair loss is the number one stark, visual and constant reminder of what's going on inside an otherwise healthy body. It's like walking around with a neon sign or sandwich board announcing to the world "I've got cancer". No wonder it's so devastating. Too often, we barely have time to process or get used to what's even happened, when we start losing our hair due to, thank GOD, relatively immediate treatment. In an effort to maintain some sense of normalcy, I know in my case, was to keep that external visual as it was. Even getting the cutest short hair cut I've probably ever had, it was monumental.
Almost four years later, I've had the longevity and the benefit of being able to go through the stages of grief that are usually reserved for the survivor's of death. You may have heard of a book by Swiss psychiatrist, Dr. Elisabeth Kubler-Ross, 'On Death and Dying' which was inspired by her work with terminally ill patients. It speaks to a series of emotions that the survivors of the deceased go through, often not in any logical order: denial, anger, bargaining, depression and acceptance. How did I learn about this book or its contents? Believe it or not, on a week long course I attended while working at Bank of Montreal. And later, another two day session while working for the Hospital Foundation. The purpose of both was providing support to Change Management. The concepts of the book have gained wide acceptance and, for me, a model that I have returned to many times given its application to so many areas of life and work. Even positive experiences can lead to a slide through the downward emotions before coming out the other side with interest, exploration, and acceptance. All you have to do is google Dr. Kubler-Ross' name and come up with a wide range of information. I'm thinking it might be my turn to read her original book. The purpose of this 'rant' is to share how I believe that I have come to a much greater place of acceptance at this stage of my life. For me, one of the key learnings has been on just how much communication must take place as it relates to any change in a person, in a family, in a workplace, on a team - you name it! This model has become my own personal 'gold standard' of managing change within myself and with those around me. The 'diamond standard' of course is my relationship with my faith and with God.
My relationship with my faith, as you may know if you've been following this blog with any regularity, is that it has been growing almost in leaps and bounds. It's been making the slides down the various rabbit holes much smoother allowing me to get to the place of acceptance much easier. More like a calm canoe trip down a lazy river rather than white water rafting, dodging boulders while having little to no effect on the gravitational pull of nature's power.
The exploration of Ignatian Spirituality has been I'd say, the greatest source of growth for me with a continued focus on 'praying with indifference' rather than praying for any specific outcome. I've talked about this before and continue to experience days when, I can accept God's Will for my Life, I can face just about anything. On the contrary, when my own, puny, self centred ego gets in the way, it's like I've made a leap from that canoe into the white water raft and, only later, wonder why I ever made the attempt. Don't get me wrong, I admire people who find a true rush by such experiences; it's just not how I want to navigate what's left of my life. The driving factor behind that leap is usually something external to self that causes the somehow immediate shift. Like something I hear or see, that causes my brain to jump to a conclusion without having any facts to support that conclusion, causing me to come to a potentially rash judgment and then dwell on the issue. It happened to me just this week, leading me to be fussed and bothered about something that wasn't! Oh what a lesson. By applying another concept of Ignatian Spirituality, called the Examen, I was able to step back and realize that I was not only leading the charge on misinformation, I was the only one suffering as a result of wrong conclusions. Had I simply taken an 'indifferent approach', left it in God's Hands, I would be been just fine thank you very much. As I write about it, I'm able to smile at my own behaviour and more importantly, learn from it. I can accept that.
Part of my plan for the future is to explore more fully the short life of St. Therese of Lisieux. The reason for this is that she has now come at me from at least two very trusted people in my life. I've learned this means 'pay attention', you are being guided. Besides, knowing my eclectic personality and tendency to bounce from one subject to another, I benefit from having placeholders to return to after chasing a rabbit down another hole. Sort of like having order within a brain that can become disordered by the distractions of an insatiable curiosity about just almost anything. My Dad used to say I was just plain nosey. I like my description better. It's why having overall life goals is so helpful - God First, followed very closely by Health and Family. I can accept that.
I'd like to close today with a comment on a phone conversation with my friend Carol Ann when she was helping her mom in Halifax last week. She shared with me how she took some time to walk the beach in the midst of what could be a fairly challenging situation. I couldn't agree more with how walking the beach is so decadent. It reminds me of when I lived at home in the Niagara area where a sand beach was available within a ten minute drive in almost any direction. Whenever I was distressed, I'd drive to the beach and just spend time playing in the sand, listening to the waves while my head and my heart took a time out. The summer I was 15, I was a maid in Crystal Beach for a wealthy American widow (78) and her bachelor son (50). They had a 7 bedroom, 5 bathroom cottage on about 200 ft of waterfront sand beach with a view of the amusement park in the distance which hosted one of the remaining wooden roller coasters. Sigh, all since replaced by condos now but leaving many Kodak moments in my mind. Some of our most cherished memories can come from what, at the time, seem like mundane, necessary tasks to achieve greater goals. Only as an adult do I realize how much I learned that summer, about relationships, about responsibility, about confidence, about humility and much more. What a great way to frame that learning - living it out at a cottage on the beach. Thank you Nick, my former neighbour who invited me to consider the job. After all, he was the part time gardener after working full time at the local Nickel Plant.
Thank you for taking the time to share a little more of my adventures in prayer and medicine. It was my hope to get this out before the 30th of June, or even later. High fives - it's done!!!! A day before my self imposed deadline. Have a wonderful Canada Day weekend, good health, safe travels and much fun with friends and family. More on that next time after our weekend with eldest step daughter Krista, hubby Mike Jones (yup we have two in our immediate family) and granddaughter Rylee, Grandaughter Emily, Rylee's sister will be with her mom so we send her virtual hugs.
Take care and God Bless,
Hugs
Liz
dobbsjones@gmail.com
'Prayers wrapped in faith and sent with love are the greatest gifts we can receive.'
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