The sweet spot

Hi! No April foolin’, just me with a check in. Nothing major to report, but I’ve found that if I don’t periodically post a little shout out, people start to get nervous. Let me assure you, no news is always good news – I promise, you all have been so good to us, I will not keep you in the dark. We appreciate your love and support!

Not much has changed with my vision this past month. I’m sure it’s gotten worse, but it’s happening so slowly that I’m adapting to it pretty well. I’m getting a little better with the depth perception (although anyone in my Godspell cast will probably disagree – I’ve tripped up and down the stage steps more times in rehearsals than I can count. But then, that could just be my clumsiness. And that’s nothing new).

This past week was devoted to “making sure all the other stuff works.” Four doctor appointments in four days, including a mammogram, Pap smear, multiple blood draws and a colonoscopy. I have been violated in the name of science in just about every way possible, but the good news is that everything else does in fact work just fine. I learned the hard way that you do not want to be driving when your colonoscopy prep starts to work. Disaster was averted, but not without me screaming at the slow driver ahead of me, “MOVE! I’VE HAD A LAXATIVE!!!” Good times.

Editor’s note: the following is another post-turned-extremely-drawn-out-story, so grab a sandwich or a cup of tea or something and get comfortable. Or just skip it, that’s totally fine too. I won’t know.

So I titled this post “The Sweet Spot” because for the past month that’s what I’ve been
seeking – that perfect balance between being completely blissfully ignorant, and being entirely over informed. Somewhere in the middle is the sweet spot: an informed patient who advocates for herself – not someone who blindly (ooh, bad pun) goes with the flow, and not someone who immerses herself in her condition to the extent that she becomes a hypochondriac and total nut job – just the comfortable middle place between the two extremes. The sweet spot. I haven’t found it yet, but after a rough month of dealing with my health care (and, in some cases, not dealing with it), I think I might be on my way.

As I described in my last post, I was having trouble getting through to my doctor or his assistant. I had concerns that the tests that had been ordered weren’t the appropriate tests, and there were some things he had said would be happening that weren’t. Every time I called his asssitant’s direct line, I instead got some snippy lady in ophthalmology who clearly thought I was a nuisance and wasn’t interested in passing along any of my questions or concerns. And when one of these aforementioned snippy ladies huffed that of course I couldn’t get through to him, he has more patients than he can handle, well, let’s just say it did not inspire confidence. At the time, I resolved to just leave it and take these issues up with Dr. Pulido at my next appointment. And initially I thought I was ok with this. But then I started waking up with horrible jaw pain, and my neck got so tight I couldn’t turn it all the way to the right….yeah, turns out I was a little more tense than I thought. So, after talking with some girlfriends and crying to Rich about it, I came up with a brilliant idea: the next time I called the assistant’s direct line and a Snippy Lady answered I would simply ask for the assistant’s voice mail. Ah ha! Then I would be able to ask my questions and get some peace of mind to last me until my appointments. Perfect.

So Rich came home the next day and asked, “Did you call Mayo?”
“Because I was having a good day.”

See, that’s the other thing: some days I just don’t feel like having cancer. The sun is shining, life is going well, I’m busy with things that make me happy – and I don’t want to wreck it. So I don’t. I pretend for the day that cancer is someone else’s story.

That’s one end of the pendulum, the blissfully ignorant, blindly trusting (bad pun again) person. But it’s amazing how fast and unpredictably the pendulum can swing to the other extreme: the total nut job. Out of nowhere, on a seemingly fine day, I found myself again scouring the internet for some assurances that I was having the appropriate tests. And to be clear, let me just say this is not about the tests. I mean, yes, the tests are important because the more sensitive the scans, the earlier they can catch any spread of the cancer. It doesn’t mean you’ll live, but catching it earlier gives you more time, and that is important to me. But the real issue with getting the right tests is feeling confident in my care, being able to rest in the knowledge that I’m in the best hands possible. And when everything I was reading was saying that the tests that had been ordered for me were not enough, I started to worry. What if Mayo wasn’t the best place for me? What if I had just placed my life in the hands of an overburdened system that simply couldn’t handle one more patient with an obscure cancer?

Like I said, the pendulum swings quickly and without warning sometimes. But for whatever reason, I woke up one morning and decided that I was going to call my doctor’s assistant, and this time I would ask for her voicemail. So I did exactly that. As expected, her direct line was answered by a Snippy Lady, who informed me that she wasn’t there that day. But this time I was smug.
“May I have her voicemail please?”
“Nope. It’s just me.”

Yeah. Did not expect that. I hung up, defeated once again by the Mayo brick wall. Unless… I have no idea what made me think of it, but I got out my iPad and looked up the number for Wills Eye Hospital in Philadelphia. They are, to my knowledge, the number one place for ocular oncology, featuring a husband and wife team of doctors that are at the forefront of ocular melanoma research and care. I hadn’t been able to find out anything about their follow up testing online, but what if I called? I found a general number for the ocular oncology department, and when I dialed it spoke with a very nice (read: not Snippy) lady. I asked her point blank what Dr. Shields’ follow up protocol was after plaque brachytherapy, and she promptly rattled off the components of their “metastatic workup” – and it was exactly the tests that I had read in other places that I should be having, not what Mayo had me doing. So there. A definitive answer, and confirmation that I needed to pursue changing my tests, or at least talking with my doctor about that. And the lightbulb here for me was the realization that I am not shackled to Mayo. It would be a pain, yes, and I don’t know what my insurance would think of it, but if I need to I can go to Philadelphia for my care if that’s the best place for me to be.

Armed with this fresh sense of boldness, I went to my ever growing medical file and searched through all my Mayo pamphlets, packets and various papers, looking for anything that sounded like “customer service.” Which is how I found the Office of Patient Experience. To make an already long story less long, after about five phone calls with three people over four days (not kidding), I was able to speak directly with my doctor’s assistant. And, I must add, unlike the Snippy Ladies, she is one sweet woman. After sharing my concerns with her, I asked if she could check with Dr. Pulido about my tests. She was more than happy to connect with him on my behalf.
“So what are you asking for?”
Commence nervous babbling…
“Well I’m not trying to challenge his authority or anything like that, I mean it’s not like I have a medical degree or anything, and really, what do I know anyway? I’m just some crazy lady with cancer and access to the internet, and I’m scared and -”
Stop. Deep breath. Put on your big girl panties and start over.
“I would like to follow the Wills Eye Hospital protocol.”

I received a phone call two days later saying that my tests had been changed.

And I am the closest I’ve come yet to the sweet spot. The closest to being an informed patient who is willing to take the time and effort to advocate for herself when necessary, without going all crazy cancer lady (my kids’ term for when I lose it). I feel good that my doctor clearly is willing to let me have a say in my care, so I’m staying at Mayo. For now at least. Because as captain of my care team I know I can switch to somewhere else at any time. I don’t think I ever wanted to be captain, but I’ve learned that the person most invested in my cancer journey is me, so I’d better buck up and take some responsibility. Big girl panties are on.

Whew, that was a long one. Thanks for hanging with me and as always, thank you for coming with us on this journey. We are blessed beyond measure to have the support and love that we do. So thank you.

I have my Mayo scans and appointments at the end of the month, so I don’t expect to post again until then (unless I have another freak out – I’m told I’m funny when I flip out). I would appreciate your prayers and positive thoughts for good appointments – that the scans will show that the radiation is causing the tumor to shrink, and that there is no spread to other organs. And that the nerves in the weeks leading up to those scans don’t get the best of us.


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