A Check-in with Remission Control

In the first few days after my diagnosis I relayed my news to a college friend who I knew to have several personal experiences with cancer in his family. One bit of advice that he had came from his mother's long battle--Some time has passed so I'll paraphrase a bit: "Doctor's are human too, do your own research and don't be afraid to make suggestions based on what you learn".

For those who have followed the blog from early on, or who have read back enough to have caught my "Remission Control" post on October 22 may recall my struggle with what little I control in the recovery process. At that time I concluded there was little within my control than to make myself available for treatment and another category of behaviors that I had labeled 'attitude' into which I was able to find a bit more to do that is helpful.

My friend's advice, which springs from watching his mother's long struggle with cancer, has served as a foundation for my actions as patient that I have put into the category of 'attitude'. It is actually better described as staying informed and it has recently borne fruit in several comforting and helpful ways that I thought I might share. My angle in using this advice has been to do what I can to help my busy care team keep on top of my complex treatment protocol and to better understand what they need to know from me so that I am prepared to give a full status report when asked.

Early on I had spent a fair amount of time learning about the Hyper CVAD treatment protocol and I have included a link to a very, very helpful article on both versions of my blog for anyone who would like to learn more about what I'm going through at any time. This research has enabled me to ask pertinent questions like: "I see this list of medications does not include the Steroids that were a very important part of round A1. Shouldn't I be getting them here in A2?" Whether I am right or not isn't as important as my becoming a consultative part of the treatment team.

Last night as those same steroids interfered with sleep a bit I drummed up an analogy where I'm part of a team of Tree Surgeons in charge of the health of a forest full of trees. While the real experts are trained to treat all manner of tree-issues across a wide variety of trees I might be likened to a Jr. Tree Surgeon assigned to know a single tree (me) with a single issue. While I might not have the breadth of training or the clinical insight of the oncology doctors and nurses, I do have a whole lot of experience with this single tree's health and well being. That experience coupled with a burgeoning knowledge of my single issue certainly has value that should be brought to bear on my overall treatment.

It probably doesn't surprise many of you who have worked or studied with me to know that I've become very data-driven in this process. I have been keeping track of my blood counts as I move through treatment phases. I can't recall if this was suggested to me from somewhere or if I just started doing it on my own. In any event it came in handy this week as I attempted to figure out what my plan might be for Thanksgiving. Could I see the extended family coming down from Pennsylvania or will I still be bottomed-out on white blood cells and at severe risk of infection?

Yesterday's test on day 13 of treatment revealed that my counts were still dipping a bit and seemed to point to my having to remain home from Thanksgiving festivities. However, my treatment team seemed to think that the counts should return by the day after Thanksgiving and changed the plan for my outpatient treatments to skip today and tomorrow's visit in favor of a visit on Friday where my counts should be up and planning for round four (or B2) can begin. Yesterday, I discussed my handling of Thanksgiving with my treatment team and mentioned that I would like to factor in any trends I might have noticed on blood counts thus far. I was met with enthusiasm and encouragement.

I went back to the numbers that I've faithfully been keeping and was able to identify a trend. Using the hospital admission date as day #1 of a new treatment round I was able to determine that the white blood cells hit bottom by day #12 and in the first two rounds returned to normal ranges by day #15. I'm happy to announce that day #15 is tomorrow and that I feel that there is good reason to believe that I should be in the normal range of WBC's in time for Thanksgiving!

So, while I'm not curing my own cancer or revising my treatment plan I do feel that my efforts to become an informed and good patient are helping if only to assist my treatment team and to bolster the positive feelings that have buoyed me through the process thus far.