August 12th was when I was admitted to hospice and it is now September 16th. I missed half of summer and probably the best part of it. However, there is no going back and I am so happy to have this amazing chance to get back to a more normal life, strange as it is to have a foreign device embedded in my abdomen.
The plan this week is to get me home. The representative from Medtronic who makes these pumps is coming over from Vancouver and I will learn how to operate the remote control device which is connected wirelessly to an iPad for dosage directions and more. My only involvement will be to learn how to add boluses (breakthroughs for more painful episodes) which will be predetermined along with the daily dosage by the doctor and nurses at the pain clinic. The system is set up so that I cannot “hack” into the pump for unlimited boluses.
Now that pain and the delivery system to reduce it has been “installed,” we are back to considering how to best deal with the cancer that is causing the pain. My oncologist was in to visit last week and the plan is to restart chemotherapy on Thursday which is also the probable day I will go home. I will continue with IV Gemcitabine weekly for 3 weeks with a week off and so long as tolerable this cycle will be repeated. A PET scan has been ordered as we still want to try to find out if possible, what happened to cause the major pain flare-up. Since the most recent CT scan and MRI did not appear to show any progression I hope that the PET scan either aligns with the other tests or does give us some indication of what is going on.
Meanwhile I look forward to getting back to a life with less pain with a goal of forgetting it exists for a few minutes then half an hour and so on. My daughter made a comment this weekend inferring that it would be good if I could get to the point where pain did not interrupt activities including social interaction. That may not have been exactly what she said or meant but I took it mean that I could go back to being a “normal” person rather than being consumed by pain. What a great concept! With the federal election around the corner, one of the first normal (for me) things I can do is volunteer for either one of the Victoria candidates or Dogwood. All I have to do is get home and decide what I can manage with my somewhat weakened body along with a mind that is being weaned off systemic narcotics. 😊
I may have mentioned earlier that Suzanne gave me a Kobo just as I was being admitted 5 weeks ago. From reading one book every few months, I have read half a dozen or more and managed to withdraw three more books from the Vancouver Public Library last night. The reason I almost stopped reading was because I had to put my book down every time I needed to turn the page and that became way too tiring. Much as I love real books, being able to hold the Kobo and turn pages with the same hand has been a wonderful gift. Mary encouraged me with her help to try quilting again. We actually started the process but it was at the time that pain was ramping up and it was impossible. Maybe now though I can try again. I doubt I could walk more than a block now but starting from that point will be yet another challenge. Dick will walk with me, Mary will take time to work with me to get back to the baby quilt we started and maybe I will get a few voters out to the polls October 21st.
I will be home when I write the next post.