Managing Your Care - Round III
Success at last! I made it into the hospital for my second round of chemo.
But our third attempt at admission wasn’t without incident. Although my platelets were actually ordered to be transfused before my Hickman procedure this time around, the order was placed for the wrong day. Fortunately, the nurses in Infusion scrambled and got me hooked up with platelets within a couple of hours so I could get the procedure.
As I walked into the procedure room, I was informed by Dr. Hickman’s very thorough nursing staff that I was getting a double-short Hickman. Upon further inquiry, I discovered that this is a slightly thicker Hickman line and somewhat more painful going in; it’s given to patients receiving autologous transplants (where one’s own stem cells are taken out before particularly strong chemo and then given back). Interesting…I thought. I’m not receiving an autologous transplant. Fortunately, I was able to have my nurses call my oncologist and get the order corrected before I was sedated.
So here’s yet another lesson in managing one’s care, especially in a large, academic medical system. I’ve discussed the series of issues I’ve faced with my oncologist, and he agrees that this is not ideal patient care - it happens when there are multiple teams and a big system. However, this is no excuse, and he has pledged to work extra hard to ensure that we are well taken-care of going forward.
As for this week’s treatment, it was delightfully uneventful! I was put on a kinder, gentler chemo regimen (similar to my first, induction round) since my blood counts never recovered fully. With God’s grace, I’ve had exactly zero side effects from the chemo so far (next week may be different). I’ve actually spent the week getting caught up on work and all the loving emails from around the country. I can’t reiterate enough how overwhelming the love and support has been!!
Yesterday morning, the medical team caring for me in the hospital told me that they’d need to keep me here for another 2-3 weeks until my counts recovered. I was not at all excited about this drastic change in plans from what my primary oncologist had told me. Since my oncologist and the medical team at the UW operate independently, I had to ask the two to talk. It was finally decided that I would indeed be going home Saturday even though I don’t have a functioning immune system at present. There are different views on this topic, but according to some, there are equal chances of catching an infection staying in the hospital as there are from going home, so back home I go tomorrow!
Reena’s off to NJ and will be at the drive at Piano’s in NY Sunday - come show your support and bring your family and friends! There are drives all over this country, so show your solidarity and let’s hit this 50,000 goal within the next month!!
