Another long time away from you all, and this time it is a sign that my mind has been on overdrive. Unlike the first week of tackling this big-time treatment decision when I let my ‘back-burner’ do much of the work, this weekend I focused much of my energy on my next move as a Patient. I spent all of Friday night playing with each option – Ottawa or Seattle – much of Saturday, Sunday morning, and then most all of today, and that has sparked lots of motion, but no final decision, yet. I have begun to put pressure on myself, not stress pressure, but pressure as time is not on pause and I’m due in Ottawa a week from tomorrow to start chemo, should I decide to take the Transplant option.
To clarify, I am weighing the risks and benefits of having a second Transplant in Ottawa or going to Seattle for an experimental procedure called Donour Lymphocyte Infusion (DLI). The Transplant comes with a proven track record and very high toxicity, while DLI is unproven as a cure but has a much lower toxicity. And I can have either treatment first, and should I relapse at a later date the other option will still be available to me – provided I can reach the magical Remission destination again, which is certainly not a given. You should know that as a Patient I really like the words “lower toxicity” and “proven track record” and I’m not so fond of “high toxicity” and “experimental”. The unfortunate part is that both sets of good words don’t match up with one treatment, and there is my Challenge.
At present I can make equally convincing arguments for and against each option, thus my struggle to find comfort with one of the two options. I have had days, or minutes, when I’m leaning toward Seattle, and then other times when I’m thinking Ottawa is my best shot, and of course there are times when I’m just sitting on the fence having a look at what is in each garden – that is most of the time.
I am scheduled to leave for Ottawa on Wednesday and come home the next day after testing, and then I’m planning to go back up a week from today – should I decide to have a second Transplant. Thus the added pressure, as the start of Pre-Transplant chemo isn’t getting any further away.
I’m going to think on the screen here for a minute…
It’s interesting that I only really fully committed to exploring other options after learning that Toronto couldn’t Transplant me under the original Plan A. It was then when we focused ourselves on finding other Transplant Centers. That search was on both sides of our border, and we found solid options in Canada and the US. Once the Canada option became a reality I then decided that Seattle would not be best – and a large part of that reasoning was because of the major cost associated with US medical care. I have felt that if I was to go to a US hospital that we would be able to raise the money required, however much it was, I always felt that it was attainable. But I also felt that it was a major obstacle to tackle and if we could avoid tackling it, then we would have much more energy to focus on the immediate Challenge – my health.
So after our Transplant Center search turned up Ottawa I was comfortable with that choice, at some level. The universe then sent me another gift in the form of a conversation with a friend who wanted to ensure that I was making the best choice. This friend and I have spent a lot of time talking about strategy, and he wanted to be sure that I was choosing the best strategy for me and then filling in the resources, as opposed to checking the resources and choosing the best available option. He was very right, and as soon as he brought those words back to me I knew that I hadn’t followed the strategic decision making process properly. Not the process that I know is best. That began the active process of deciding which of these two options that I have comfort with is best.
Complementing that I have been extremely fortunate to have people step up and offer to help with the financial side of my treatment, as I no longer have medical insurance.
I now ask these questions, that only I can answer…
What reasons are behind Toronto’s inability to Transplant me under Plan A, what is the reason that I found the Seattle hospital – which happens to be one of the best Transplant Centers in the world – and this alternative treatment, what role do the offers to help financially play… there are many many questions, and I have asked them of myself many times over the past 10 days or so. I am confident that I have the answer, it’s just taking me a while to find it. It is in there though, I know that, and when I find it I’ll share.
Always…
Live Life. Love Life.
Geoff
