Today Lori came with me to hear what Dr L had to say about switching me from Arimidex to a new hormone drug... What is it they say about best laid plans?
Yesterday I noticed that my appointment card listed Dr L at 10:00 and then chemo. I don't have chemo. My infusion, Zometa, is not a chemotherapy drug. I figured it was just a mistake--but it is the kind of mistake that could really freak some people out!
Plus, I need to arrive about an hour before my Dr appointment so the nursing staff can insert my IV and draw blood for labs. If I show up at the time listed as my "Dr appointment" on the card, it can really mess up every one's schedule for the day. (I know, because it has happened.)
I point these things out the the receptionist when we arrive (a little after 9 am). She asks to keep the card to show to the director, saying they hope to find a better solution for these kind of mix-ups between the front desk and the treatment areas.
I go on into the infusion room, set up my ipod, earbuds and laptop and do my best to zone out while the poking ensues. It is a tough one this morning. I have not found any sure fire way to make it easier. Being hydrated helps, having a puff right before helps (but I don't want to do that if I plan on any medical discussions with the doc!), but nothing helps every time. One just does the best one can before during and after the ordeal. I can tell you it is not easy on anyone.
Lori joins me in the exam room and meets Dr L (aka Doogie Howser) who tells us that since I am tolerating the current med (Arimidex) so well, and it has had such impressive results on my liver lesions, he now thinks we should stay the course --at least until we get the next set of scans (in January-- they happen about every 3 months) before we look at switching to the new med (Aromasin).
Well, there's a surprise. But OK.
Back out to the infusion room. We must wait while they finish running my labs before they can give me the Zometa. A couple of staff people stop by to ask about my getting Reiki today. (I had stopped at the downstairs information desk on my way in and requested a Reiki practitioner come up to the infusion room to treat me whenever one arrived. I don't know if this new notoriety is because of that or from my phone calls to the Director and the Spiritual Care people after last month's Reiki fiasco.)
Lynn, the Director-- with whom I had a conversation last month about creating the possibility of quiet in the infusion room-- tells me they have ordered noise canceling head phones. A good start. Not one but TWO Reiki practitioners come by to work on me-- one before the infusion arrives, one after. The Reiki people thank me for raising a squawk. It seems it was helpful.
Nina comes by at the end to say hello and we talk again about the work we imagine being part of together, exploring pyscho-spiritual-social approaches to healing-- methods that focus not so much on "cure" per se, as on finding meaningfulness with whatever circumstances life throws our way, including illness and loss. The current model of battle for victory over disease can prevent us from being present to the life we have right now. I do not know that either Nina or myself are patient people by nature, but we are learning. Slow, patient, steady. It is a long slog, but it is good to have partners in this endeavor.
One step at a time, baby, one step at a time.
My blood work comes back showing my platelets are low. My white and red blood count is fine. Maybe this is some freaky occurrence? The Dr wants me to get another blood draw next week just to keep an eye on things. Maybe this is why I am especially bleed-y when they take out the IV today? Maybe it explains my tiredness the last couple of days? I do not know. I need to do a little more research on this low platelet phenomenon.
But I do know that after a bowl of Tom Kah soup and a whirl around K-Mart and Home Depot (Need new curtain rod!) Lori and I both arrive back in Hood River, about seven and a half hours after we left, totally pooped. One step at a time, people.
My (mostly) remodeled house is (mostly) painted (interiors, anyway)-- but there is plenty left to clean/recycle/toss/re-arrange /etc before my holiday company arrives, and I am just going to have to pace myself. Do not hurry, do not tarry. Tomorrow is another day.