Last Tuesday we reported to the Oncology Clinic for the first appointment of the day. We being myself of course, Mike and our loyal and dear friend Tess, a retired nurse and our translator as needed. She has faithfully followed and even led me to appointments with doctors, clinics and treatment, sitting through treatments keeping my spirits up or sitting quietly when and as needed. The true qualities of a good nurse. After the usual discussion with and examination by a Medical Student, Dr. B. arrived to share the results of the Cat Scan from May 3rd.
Bottom line of the report, last sentence: 'No evidence of progression.' Also, the CA125 blood test which topped out at the beginning of this adventure at over 1600, is now down to 66. Yes you read that right - 66. (Normal healthy person is about 35). We discussed options of remaining on chemo, as some people are frightened of knowing they have cancer and not 'doing anything about it'. Well I've been told more than once I'm not medically curable so am not expecting it to simply go away without some divine miracle. If the chemo has done it's job, it clearly has yet again, then we all agreed with the results we have in hand, let's return to 'Watchful Waiting'. Dr. B. was very clear. It is anyone's guess as to when things might act up again. It could be six weeks, six months, or much longer but no one knows. By taking a break from the chemo, it remains a tool for future consideration if and when needed. Sounds like a plan to me and as the doc suggested, we have better things to do with our time than to be scheduling our lives around medical appointments. We agree.
Oh, you know that clinical trial I started writing about last August or so? The one my doctors were so excited about and had everything in order to start in Kingston as a satellite? It still hasn't opened! While it might sound frustrating to some, I'm actually relieved. Why? Because it not opening yet means it is still out ahead of us as another possible tool in our box to fix things up again sometime in the future.
On top of all that, I took my last hydromorphone capsule on the morning of my appointment! Yay. Dr. B. started the discussion wanting to confirm I'd actually weaned off the stuff. It was wonderful to say I'd taken the last one only that morning. Even better was to flip back the page in my medical journal to say on April 10th he'd suggested I keep reducing and try to get off it! Since then though, even though I'd only gone down from 3 mg. once a day to zero, the past week has had its share of withdrawal consisting of a sort of malaise, fatigue and restlessness at night. I can report being off the narcotic I no longer sleep for 10-12 hours a night, often with a nap during the day. I'm feeling much less 'snowed under', my mind is clearer, and I can rely on Mother Nature for 'evacuation' rather than having to rely on laxatives. (It's true and a vitally important function. Trust me on that one if you've never experienced problems lol) For the past week I've been relying on 1-3 Extra Strength Tylenol to deal with my recurring back pain. Oh if only I could have some Advil (Ibuprofen) but not so being on blood thinners.
At the end of our appointment, the medical staff had left and as we were gathering our things to leave, Tess pointed something out on the covered windows. We looked around and could not identify anything which could possibly be creating the reflection we were seeing. I also happened to be sitting at the end of the reflection during my appointment. Here it is:
Being someone who has difficulty doing one thing at a time, I've also embarked on the physio, massage and continued pool workouts to contend with my back issues. Hands on physio, coupled with massage while weaning of a narcotic leaves me wondering a little bit as to what my baseline for pain is right now. It's hard to say. This week I'm only doing the pool and trying mainly to stretch out those muscles that are wonky as a result of the fusion in a big part of my spine.
An appointment with my family doc tomorrow will assess whether an x-ray would be in order to determine if the degenerative disc disease has advanced (arthritis in our spine which I believe we all have), whether I should consider getting a prescription for a stronger pain med in the non narcotic field (Tramacet which I've used before with reasonable results) and ask if she has any additional recommendations to ease what can often be a constant discomfort.
Well this has been the longest medical update in a very long time, but hopefully useful information for anyone who has health issues themselves or wonder what comes along with the dreaded diagnoses of 'The Big C'. As I mentioned last time, think of it becoming a chronic illness which is probably being researched more than any other disease on the planet meaning advances are being made all the time in terms of treatment and care. One thing I didn't mention last time about ringing the bell at the end of treatment. Someone told me it's actually often referred to as the Bell of Hope. I'd not heard that before and knowing that tidbit helped me understand the importance of giving it a good ring.
I've been involved in doing what I call 'good things' these past couple of weeks, especially related to my newly referenced ministry of being in contact with friends and acquaintances . Having said that I have one call I have not returned for no good reason and just have to do it. I'm not sure why it is, we sometimes get hung up on such simple things. One thing I've noticed though, by not having too much on the go this week is how I've been keeping busier than might be good for me from a healing perspective. This is one of the biggest adjustments to living with a chronic illness. You can't just push on, work through it, pick yourself up by the bootstraps. No, no, no, hard as I'm trying I don't think I've been listening to my body as much as I need to.
One intriguing visit is having tea one morning last week with someone I'd never met before. I'd heard of this person through my son and his wife from a dinner party they'd both attended. The similarities were such that my son thought it would be a good idea for us to connect. I learned she works full time caring for the Sisters at Heathfield who have Alzheimer's and of course I have more than one dear friend who I continue to keep in contact with there. The amazing thing she shared with me is her charity work. Ten years ago, she was on a humanitarian trip and ended up spending 3 months in Kenya. Since that time she has returned every years, sometimes for 3 months but mostly for a couple of weeks each February. She has, single handedly, with the help of local residents, built a school, opened a Women's Empowerment Centre, set up a clean water filtration system and much more than I can remember. Each year she goes with the view of scoping out the next project, then costing it out, coming back home, and, in her spare time fundraises for the costs of the project(s). She does not charge so much as a postage stamp to her charity account with is called Kenya Help, but bears all administrative costs personally in order to ensure every donor dollar is spent on building the infrastructure in 'her' village in Kenya. I was absolutely spell bound by her passion, organization, thoroughness, and boundless energy. It has certainly left a lasting impression on me and I look forward to our next visit.
What I gleaned from our conversation was how any one of us, given the right calling, can do so much more than we could ever imagine (her words to me) with our God given skills and talents. Having worked in a large local charity I kept wondering how in the world she could do all and everything herself. She does receive administrative support from another charity CanAssist, through a local physician who has also spent countless days and weeks in Africa. Not only does she do the fundraising, she develops the actual charitable and humanitarian projects and, with some help from others, manages to continue to develop the infrastructure for the folks who have so little.
If you are the least bit intrigued by this story feel free to browse her website at www.kenyahelp.ca.
Before I go, just want to let you know about the mental reframing I've done about that long, planting row at the back of our house. After scouting out a couple of plant places I realized they were selling perennials I was yanking out as weeds. Hmmm, I better rethink things. Why not start with scoping out our own yard and moving those plants I refer to as weeds (only reason is they pop up anywhere and anytime they please) into the planting row? No good reason I concluded so have made up a list of 'replanting requests' for Mike to undertake while plants are still moveable. Today a friend dropped by to leave me part of her elephant hosta to take up residence as a new friend to the garden. We know just where it will reside. Off to the garden we go to play and reorganize.
While plant stores and nurseries everywhere will be jammed with anxious shoppers this weekend I will be learning about Moses for the entire long weekend. I've been doing much less in hopes of rebuilding my reserve of energy. I'll let you know how I made out next post. Until then,
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."
No comments:
Post a Comment
Please feel free to submit a comment about my posts.