I’m a planner…always have been. Where should I go to college, what career am I interested in, where are we going on vacation next year, how many children should we have, where are we going to retire, …you get the picture. One look at my daughter’s itinerary for her Disney vacation and it clear it’s a skill (or character flaw) I’ve passed along.
As you might imagine, living in the world of cancer treatment where your visibility for planning is literally from day to day (sometimes hour to hour), can be a little disconcerting for someone like me. The big planning items are definitely off the table, no vacation plans for the foreseeable future, avoiding major financial decisions, suspend plans to visit new grandchildren or even the existing ones, and no major home improvements. Instead you spend your time on mundane daily activities like your schedule for when to take the multitude of pills (I need a spreadsheet to track it), what foods to eat and when (not to conflict with pills), scheduling DR appointments, wound care and general hygiene. Simple things like mouth care take on a whole new level of importance as you try to avoid mouth sores and prevent any bleeding. Turns out an open sore in the mouth is the fastest way to get an infection given the amount of bacteria present. Something as simple as making your gums bleed while flossing can mean a free trip back to the hospital for more antibiotics/antibacterial meds. As an aside, for all you dog lovers, your dog’s mouth is not cleaner than a human’s. One look at where my dogs’ lick or stick their noses when meeting other dogs makes that clear (not to mention what they are willing to eat given the chance).
The other things that get priority are of course the health ones, like scheduling DRs appointments, lab tests, dentist appointments, and of course going back in the hospital for the next round of chemo. Most of these fall more in the hurry up and wait category. You have to love the irony of being told it is critical you be kept in the hospital because you have a cardiac reaction to meds or fever, told to follow up with the DR when you are released, and then you call for an appointment and he can’t see you for 2 months because he is booked up. I guess if I want to see him sooner I’ll need to have a heart attack or something.
Other day to day items are more stressful, like getting an answer on whether the next level of treatment will require a Bone Marrow Transplant or Chemo Consolidation. No small issue given it affects not only when you go into the hospital and how long you will be there but also minor issues like finding donors, financial implications, and survival rates. As I mentioned last week, we were waiting on test results that would tell us which path we needed to take next. First round of tests showed I was favorable for going straight to Consolidation but relapses are frequent which is why survival rates are measured over 5 years. Leukemia is a tricky bugger. Because it is in the marrow/blood the little buggers can hide in multiple places and tests can’t always determine if all the cells have been destroyed. In getting a second opinion from the Fox Chase Cancer Center they run an additional chromosomal test called C-Kit that determines the likelihood that you will have a relapse and ultimately need to get a Bone Marrow Transplant (sometimes called a stem cell transplant). It was this test we were waiting on.
Friday came and went without an answer and given pathology labs don’t work weekends (because of course patients love to be left hanging), Monday was the new target. Monday too came and went without an answer which delayed plans for getting me back into the hospital for the next round of Chemo. Tuesday brings an answer…C-Kit is negative (prayers answered…thanks everyone). With that one result, the 5 year survival rate just doubled to 50%.
So it is on to Consolidation Chemo this week. We will be doing it at Fox Chase in Philly where there is a 3 day/3 week regiment…3 days of high intensity chemo in hospital followed by 2 ½ weeks of recovery at home with out-patient support for blood transfusions, medications and labs. And to make sure I don’t do any long term planning, this will essentially put me on a day to day schedule for the next 3-4 months. More on this next week as I get a feel for what this will be like.
Of course I can’t let the week pass without mentioning Monday’s Boston Marathon. For a short while I actually thought I might be able to make it up to see the race but between Pam and my DR clearer heads prevailed. So on race day I was riding the couch (instead of the bus to the start), watching the run online (instead of being at the starting line with the other runners) and sharing the experience with Pam and the dogs (vs 26000 other runners and 1million spectators). Totally selfishly, I earned the right to be there and to say it was disappointing is an understatement. Another good example of just letting go and taking things day to day for a while. Not sure I’ll ever get use to this.
Till next week….