Until recently, if you’d asked me who my team is, I’d have said the Denver Broncos. I even found a graphic for this post in their team colors! They’re still my favorite sports team, but I have a much more important team now. My medical team. My oncologist and his wonderful staff. I couldn’t ask for a better team. I just hope I get to keep them.
After my last visit to the oncologist’s office, when I got such stellar PSA numbers (.16, my lowest result ever, down from 1.3, my previous all-time low) and great care, which I talked about in detail in my last post, I received an email from Centura Health, where I get all of my treatment. Cypress Hemotology and Oncology at Porter Hospital here in Denver, Colorado is the actual oncology office I visit most often. They are part of Centura Health. In the email, Centura wanted me to fill out an online survey about the care I received.
I almost never fill out online surveys about anything, but this time, I made an exception. Each page of the survey asked a series of questions about my visit, from the reception staff to the doctors, nurses, and assistants. Each question asked for a rating, from Poor to Excellent. There was a box for comments at the bottom of each page.
As you can probably guess, I gave them an Excellent rating on almost everything. I think I gave them a Very Good on one thing, but I don’t remember what. And I typed glowing reviews in the comments box on most of the pages.
On the reception page, I talked about how most of the receptionists seem to know me by name now, and how nice that is. On the page dedicated to the nurses and physician’s assistants, I asked if I could give Melanie, my cancer care nurse and Nikki, who is the PA who does most of my blood draws, a ten. The ratings only went up to five. I love these ladies. And on the oncologist page, I raved about how my doctor is just the kind of doctor I want. A no-nonsense science guy who gives it to me straight, and always respects my treatment choices.
As I filled out that survey, the feeling that began after I posted Melanie And Me grew very strong. These people are my team. I honestly hadn’t thought of them that way until recently. But the incredible, unprecedented response to Melanie And Me had brought that idea home to me. So many responded about their own cancer care team, or the team a loved one has or had. I realized that I love my team too.
After that visit, I felt so good about the way my treatment is going, I said in this blog that, since what we’re doing seems to be working, we’re gonna keep doing it. That is certainly my hope and intention. But it all depends on my ability to continue this treatment, and my ability to keep seeing my team.
Because, in spite of my good PSA numbers, I still have aggressive, Stage 4 prostate cancer. My prognosis has not changed. We’re very hopeful that the good numbers will continue for a good long while, but that can only happen if I can keep getting treatment as planned.
There’s a reason I’m writing this and posting it on Inauguration Day. I’ve talked about it before in this blog. I’m concerned that I’ll lose my coverage. If I do, I’ll have to stop seeing my team, and these good numbers won’t last long.
I’m not here to blame anyone. I know that people who love me, and care about me deeply voted for this result. It’s hard for me to reconcile in my head how that could be, but I have to accept it. And of course, I know it’s not all about me. Everyone votes based on the issues that are important to them. I can’t honestly say that I had the fate of my health care in mind when I voted. I can’t expect you to be thinking about me when you vote.
I know that everything government does takes time, and even if they repeal my coverage tomorrow, there will be a period of some months, at least, before it expires. So I should have some time to keep going with my treatment. I should be able to keep seeing my team for a little while longer, at least. Maybe I’ll even be able to get my next Lupron shot six months from now. But I fear that won’t be the case. There are too many in Washington, D.C. who subscribe to the “makers and takers” view of society. There has never seemed to be a great desire on the part of those who share this philosophy to help those who are viewed as takers. I’ve been a maker for my whole adult life until I was diagnosed, but now I definitely fall into the taker category. I need help. A lot of it. Much more than can be raised in a GoFundMe campaign.
So just as I realized what a great team I have, I’m faced with the prospect of losing them. I know that the current system forced many to change their coverage and doctors, and if that happened to you, I don’t minimize your experience at all. But it didn’t take away your ability to get coverage. It may have made it more expensive and less convenient, but you probably still have it. And it provided a way for self-employed people like me to get coverage. Many of us, for the first time in our lives.
If I have to buy insurance on the individual market with no help, insurance companies will be able to charge me whatever they want. I have a $9,000 prescription every month! What will my premium and deductible be? If that’s my only choice, I’ll have to go without insurance, and without care. Nightmare scenarios involving paralysis, forced hospitalization or institutionalization with no insurance, followed by a seizing of all of our assets to pay the bills, leaving my wife with nothing but debt race through my head.
You may try to reassure me, but this possibility seems all too real to me. It happened to many people before the Affordable Care Act was passed.
I’m sorry if this post went off the rails for you. If it did, you probably haven’t read this far. And I realize that my team extends far beyond my medical team. Everyone who prays for me, supports me, and loves me is part of my team. My extended team comes in all political stripes. I love each and every one of you, regardless of how you voted. But I still really hope I get to keep seeing my medical team for as long as I need to. #waroncancer