Here we are bouncing around emotionally and physically somewhat like the weather. From being snowed under one day to blowing around the next, and drenched the third. Much like today which looks more like a spring day heading for the promise of melting snow and fresh buds to appear on the trees. Wishful thinking? Perhaps, but it never hurts.
Things have been relatively quiet on the medical front in terms of appointments and visits, tests and treatments. I've had one phone in check up with the Nurse Practitioner which was most helpful to put all things in perspective of late. I had a list of questions, she had a list of answers and so we bounced back and forth clearing a path of much better understanding on both sides. I must admit my mea culpa for not hearing back as soon as I'd hoped. She responds to patients by triaging her messages and emails and what do I do? I say, Oh sure, go ahead, I'm fine for now. Respond when you can. Take care of others who may need it more. All to only fuel building resentment, only so obvious now, of wondering when my turn to be called back would come. Ok lesson hopefully learned. She is NOT a mindreader and can only respond to a direct call for help. Got it?!
My biggest physical challenge over the past two weeks is the inability of my body to absorb fat due to decreased liver function. So what's the big deal with that you might wonder. Well I learned first hand by the number of times I couldn't control bodily functions when feeling reasonably ok to be out and about. Needless to say the first thing to do would be to stop any and all laxatives which only work to make me a whirling dervish racing around in circles trying to find the closest restroom! The aftermath of weakness and sense of physical draining leaves one like a damp rag being wrung out to the extreme.
Another important factor will be to have a conversation with the dietician to determine what I need to be eating and drinking to have something stay with me. Only now am I starting to understand the concept of how people lose weight without trying when they are in these situations. Over the course of two weeks I've lost 7 pounds. While it puts me back close to my 'old' normal, this certainly can't continue for any great length of time! No wonder they want me consuming lots of calorie packed food and drink.
Listening to my body continues to be a high priority, reducing activity as needed without pushing through. Now, more than ever, my body needs rest, it simply can't keep up. A rest in the afternoon may become mandatory - oh my, that long held feeling mid afternoon when working, to simply lay your head down on your desk and catch a few zzzz's! It's now totally permissible. Activity is only a means of feeling better and, if beneficial, keep going to the pool. If acupuncture is helping overall, go as regularly as is recommended. Hydration, important but not a means of reducing levels of jaundice; my theory not theirs. Overall I thought if I dramatically increased my liquid intake, I could dilute the toxins in my system. Apparently not so easy. It's all part of the process of the reduction in liver function.
I even asked about medical marijuana for pain but was advised there is no good evidence it helps with cancer pain; it's ok for nausea related to chemo but apparently opioids remain the primary answer for cancer pain.
Probably the most important piece of information served to me at the end of our conversation is as follows. I said I wanted to know, but didn't want to know, but sort of did, of time we're talking about based on some number thrown around at previous appointments.
The medical teams admit and agree they have no idea of accurate prognosis of time left in one's life - ain't that the truth from what we've all witnessed time and again. Here though, is what they look for, Level of Function.
If one's overall level of function changes (decreases) month over month, they likely have months.
If one's overall level of function changes (decreases) week over week, they likely have weeks.
This all depends on what they are able to do and overall activity level. I don't know about you, but I sure found it a helpful approach. In my case I was told I must give serious consideration to reducing my level of activity and consider more rest during the day.
While I think I've cut back, even looking at the calendar over the past couple of weeks leaves me wondering about myself! We've been out for dinner at least twice, but then who wouldn't rather have dinner out than having to think about cooking? Both times were with family which also fits right in with our growing priority of spending time with those closest to us. We spent time with Doris, my Dad's dear companion of 17 years, who turned 97 on the 6th of February and is living in a nursing home. We always enjoy our visits once we settle in and recall the times we've spend together over the years.
I've had lunch out twice with friends whom I have special connections to. One of those friends I met during a silent retreat we've attended for several years now at the Manresa Jesuit Centre in Pickering. She has prayed over me in the past with direct and immediate impact. This time we left the restaurant, packed into my car, as she'd been directed all through lunch she was to pray over me, if I was open to it. Well, of course!
From there though, I went into a full decline in my feeling of wellness but perhaps to slow me down yet again! I had a lovely visit the next day with my son's very first girlfriend who I've know since she was 15 and is now the mom of a delightful 3 month old baby girl and recently turned 34! How special is a visit like hers? We have always been close in a very special way, with usually her contacting me out of the blue with lots of things to say.
This afternoon I hope to get to get in a visit with my Terminal Twin, Geneva and see where Holy Spirit leads us in our fun and laughter. Spending quiet times together with people is very much what it 's all about these days although I've attended a couple of learning sessions at the church which continue to feed my soul in ways hard to describe other than an overall general sense of wellness and security.
The last week or so has included prepping for our third Granddaughter fashion show which takes place this Sunday here at our house. The models will include 4 of our granddaughters, ages 8,7,4 and 3. Last year we didn't get the time nailed down soon enough to have many, if any visitors other than our own family. Oh my, this time we are up over a dozen so far! It will be interesting to see the outcome now, with them all a year older. The collection comes from the clothes I buy twice a year from a former colleague whose daughters have grown out of their own lavish assortment of attire!
No I am not taking on all the work. I've recruited dear friends who will prepare the refreshments, others who will do the photography so I can create for each of them a post show photo book and the moms of course to help with organizing the selection of styles they will wear. Should be lots of fun and mayhem.
On a final note, I am pleased to let you know I made an appointment with and had a meeting at the Jump Plus Store in Kingston last Friday about backing up my blog and next steps of figuring out what to do with not only my blog but cleaning up, purging, saving and organizing my MacBook. What a great feeling to get a logistical issue underway when I have such little knowledge, or interest in learning how to do it all. This is one of those times to call in the experts! And I had saved my comments from previous posts and have them stored on my computer. Just so you know.
Also, at the start of my blog, there is a large notice from I think Google+ which starts out as rules of the European Union. Today it went on in fair detail about how many items will be 'stripped' from my blogspot account. Well, I've never added anything and am almost wondering if the overall change will have less impact on my little blog than originally anticipated. I'm still glad though to have gone ahead with plan to back it up! More on that as time goes on.
Oh and on one final, final, note I'd like to thank an individual who emailed me out of the blue to say they were thinking about and praying for me. Never realized I'd find it so touching especially when I've known them for 30+ years on a work related, casual basis to have them reach out in such a heartfelt way to offer prayers of support. Wow, thanks!
Take care, I'm hopeful the rest I've been affording myself this week has helped lower my body's need to rebel against itself and I look forward to sharing more insights about lessons I've been learning rather than focusing so much only on things medical. By next post I will have been to one more appointment.
Hugs and God Bless,
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive".
No comments:
Post a Comment
Please feel free to submit a comment about my posts.