Hi,
We said we would update you once we had the results of the CT scan and then frankly, we forgot to! Oops!
The Doctor sat down that Monday a few weeks back and said "I have good news!" The tumours are stable, they are responding to the treatment. They haven't shrunk and they certainly will never go away but they are stable. This means that I am able to continue with this treatment for the time being and we will do another CT in a couple months to track its progress.
It was pretty incredible to hear the words "I have good news" come from one of my Doctors. It was also interesting to think about what "good news" has now become. It wasn't "they are gone" or "they are shrinking" the good news was that things had stayed the same. The perspective of what "good news" is/means has changed for us a lot in the last almost five years. I did chemo that week and I am doing chemo this week. Chemo is fine, it is a 1/2 hour and the biggest side effect for me is that I am tired for a day or two. I don't mind doing chemo.
The big issue lately has been pain. I was in a lot of pain before Christmas and was giving a regime of medicines that really helped to combat the pain. I felt wonderful, there was zero pain for weeks. One of the medications I was on was a steroid and it was starting to affect me emotionally. I was becoming over sensitive and quick to anger - essentially I was experiencing some "roid rage". The Doctors said that steroids are great for combatting inflammation but after awhile the side effects outweigh the benefits and this was becoming the case. So they began to ween me off the steroid and the pain surged in a new way and in new spots in my back. I have since met with the pain clinic. There were 2 doctors and a pharmacist and they listened to my story and the symptoms I have had. They came up with a new pain plan and I have been trying that out this week. It has not been a magical cure. My lower back is in a lot of pain despite all the medication I am on. The pharmacist has called a couple times to see how I am doing & make suggestions. I am glad to have so many readily available resources. The great thing about the pain clinic is that they have many options and ideas and it is hard to stump them. If what I am trying doesn't work we will try something else until there is a proper solution. For now I sit with either an ice pack on my back, my heating pad, or my fancy new shiatsu massage pillow. They all help in some way but the pain is chronic and it is exhausting.
We haven't had the chance to escape for a trip yet but maybe in the spring. For now I am just really needing this pain to get under control. It is frustrating and causes me to miss out on things and I HATE missing out on fun things!
For a number of reasons, we have decided not to share the blog link via Facebook anymore. If you wish to receive updates you can automatically have updates emailed to you if you fill in the "Follow by Email" spot at the top of this page on the right (on the web version). We will also update our statuses but we are no longer going to share the link via Facebook. We love your comments and encouraging words (although we're sorry we can't always reply to all of them) and there is a place below where they can be left or you can also email us directly at carolsunshine4@gmail.com .
So that is the latest,
Thanks again for reading and for your love and support!
Jacqui
Jacqui
Jacqui - Thanks for this blog. I hear you ! Finding relief from the pain is paramount in order to "have a good day". It's funny how that little sentence can become so vital . I understand you! Your grateful now for "having a good day". I understand how maddening it is to have to miss out on times you would have normally been 'in on'. You're words are honest and brave and believe it or not, very helpful to many of us. It goes without saying how much you're loved and how much we all are pulling, praying, hoping, wishing for even better days ahead.
ReplyDeleteSilly side note ----When are turkey bones dried, I got the wishbone from it, and Barry and I pulled..... I won ! Rumour has it, we can't say what we wished for, but..... you get my drift !
Love and gentle embracing hugs
Suzi
It's me, Connie, from across the waiting room to you, dear Jacqui: As you know, I have a similar list of first-line pain-management efforts (except I have this long-acting morphine too now, along-side the 'tweeners I may need for break-through pain) But--every cancer, every pain is unique. I have nothing for you but trying to manifest lightening flash bolts of insights for your doctors… and hope, hope, hope; love, love, love…. these are everything it seems to me. So here's to hoping you'll soon be leaving the heat and ice behind, and back to your usual Let's-Go-Have-Some-Fun self!! I know, I've been charged with magical thinking on my own behalf, but we've only just begun this particular equation; many more infinitely complex ones have been solved before this; why not now? Love, love.
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