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?”
“Nope.”
“Why??”
“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.”
Whaaaat???

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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The scoop

Ok this is going to be a long sucker, so go get a snack or something to eat while you read. Or, just skip all the paragraphs where I describe my panic attacks and profuse sweating and go to the end where I talk about actual stuff. Seriously, it’s ok. I won’t be hurt.

So here’s the scoop from yesterday that I was just too fried to type out (thanks for your patience, by the way!)…

The day started ridiculously early (Rich actually walked the dogs at 4:30) because my first appointment was at 6:50. Chest CT, piece of cake (and they didn’t have to inject that contrast dye that makes you feel like you peed yourself. Nice). Had a small break after so we grabbed coffee and breakfast. I don’t even know why I wasted the money on the oatmeal. I mean seriously? Too nervous to eat. But we got out our iPads and did some Christmas shopping to distract ourselves. Then up to opthamology for another 5 billion pictures of my eyes. The second I got there, my nervousness turned to full-on panic. I mean this was it – after all of our waiting, we had just some pictures and an ultrasound standing between us and the oncologist and…answers. And to make it worse, it lasted f-o-r-e-v-e-r. Everything took longer than we thought, and then just when we thought we were set to finally meet him, we were told that he wanted more pictures. More pictures?? Why? Hadn’t my eye already been thoroughly documented at this point? Nope, we did a set of infrared pictures. By the way, all of these pictures basically involve getting dilated and then being told to look in a direction that is so severe it feels like you’re going to pull an eye muscle, while a blinding light is aimed directly at your defenseless, dilated pupil. And you can’t blink. Oh, and the ultrasound was kind of creepy – the guy actually put the thing on my eyeball, along with all that goopy gel they use for ultrasounds. He put a bazillion numbing drops in first so I couldn’t feel it touching my eye, but I could feel how hard he was pushing. By the time we got home last night the drops had worn off and I felt like I’d been punched in the eye. But I digress…

We were finally called into an exam room to meet the doctor. And then I remembered: he’s a Big Shot, and Big Shots always have fellows training under them, and the fellows always go first. So instead of getting answers, we did what by now we’ve gotten very used to doing – we sat with racing hearts and sweaty palms and studied the guy’s face for any kind of reaction as he read my records and charts. He then did the longest eye exam I’ve had in my life, while I said scripture in my head and tried to breathe. He even left to get colored pencils so he could draw a picture of my eye. For real. It’s the Mayo Clinic, and I have just had zillions of pictures taken of my eye, using every kind of state of the art machinery, and he’s drawing a picture. It would have been amusing if we weren’t totally dying inside. But then as he was finishing and putting all the papers back into my folder, he glanced at one and remarked casually, “I see you already had your CT’s and MRI. Nice to have those done and looking good.” And before we could really make sense of it, he was gone. “He said they look good!” Rich whispered as the door closed. I just nodded. I wasn’t sure – good, like good quality, or like the news we had been waiting a week to hear?

They moved us to the room next door, which looked exactly the same as the room we were in. I have no idea why, except maybe they noticed the puddle of sweat on the exam chair and decided I needed a dry one. At any rate, Dr. Pulido finally entered the room, a jaunty looking man with funky glasses, a Christmas tie and bright blue and red dress socks. For the entire time he was with us, we had the feeling that he had nowhere else to be that day, that he was prepared to talk to us for as long as we needed. He told us what he knew, what he thought about various things, and answered every one of our questions. An incredibly kind man, with a sweet smile and a gentle way about him. Don’t get me wrong – he made it clear the second he stepped into the room that this was very serious. It wasn’t a happy appointment by any stretch of the imagination, but we immediately felt like we were in good hands. He put us at ease with the CT and MRI results quickly. Apparently I have multiple pulmonary nodules. He turned to me and looked me in the eye. “People get those. Don’t worry about it.” Ok. Next, there was a cyst on my liver. “People get those too. Don’t worry about that.” Ok, this is good. This is very good. And then the bad news: we can’t do the biopsy. If you really want the nitty gritty on that let me know and I’ll discuss it in a future post, but suffice it say, we are not going to be able to find out if I have class 1 or class 2. Very disappointing, to say the least. But, he also said that he doesn’t treat patients with class 1 and 2 any differently. We all get the same monitoring. The other thing he said that was reassuring was that they are making great strides in treating metastic ocular melanoma. He listed off a slew of drugs that have just recently been approved for use. And while there currently isn’t any prophylactic pill that they can give to class 2 patients, they’re getting really good at slowing the progression down. He told me that I am in better shape getting this now than even 3 years ago, that’s how fast things are improving. So basically, if I do have class 2, it’s possible that it won’t metastasize for a bunch of years, and by then who knows what treatments they’ll have in their arsenal.

And speaking of spread, the tumor is doing exactly that (there has been “retinal invasion”), so we have to move fast. That’s apparently why I jumped to the front of the surgery line – the sooner we get that plaque in, the better. And it takes a minimum of 7 days to make a plaque, so by doing the surgery next Wednesday we’re treating it as soon as possible.

Then we talked about my vision. Which was odd, because we just haven’t thought about that much. I mean, since this whole thing started we’ve been focused on saving my life, not what it was going to do to my eyesight. But Dr. Pulido handed me a prescription. “It’s for glasses with polycarbonate lenses. You need to get them now.” he said, and then explained: I’m going to have significant vision loss in my affected eye (from the radiation), so suddenly my other eye becomes very precious. As such, I will have to wear glasses every waking hour to protect it, and wear safety goggles any time I do yard work. The interesting thing is, the radiation will take a pretty long time to destroy my eyesight. It won’t happen immediately, just gradually over a period of 1 1/2 – 2 years. So my girlfriend Jeannine came with me today to pick out a sassy pair of specs. I don’t wear glasses so it’s going to take some getting used to, but it’s fine.

So the plan is to be in the hospital – St. Mary’s in Rochester (run by Mayo) – from Dec 18-23. After I’m released, I’ll only have to wear an eye patch at night (to protect me from poking myself). I won’t be allowed to exercise for a month (this is going to be very hard, I can already tell you that) so as not to put any strain on the eye. My eye will look “mealy” for a while and I will probably have double vision for a few weeks. I’ll also have a droopy eyelid, and this may or may not get better. If it’s still drooping in March, I’ll need to get a lid lift if it’s bugging me. I’ll go back a month after my surgery to see how the stitches are dissolving, and see if the tumor is shrinking. 3 months after that I’ll have more scans, but just of my liver. And if everything is looking cool, I’ll go onto a maintenance schedule of scans every 3-6 months.

So I think that’s the scoop on our day yesterday. I’m sure I’ve forgotten something, but this post is already way too long, so I’m going to have to cut it. I’ll talk about more stuff in future posts. They’re mostly f words (no, not that f word): faith, fear, friends, family and the future come to mind. I’ve got some stories about the incredible support we’ve received that I can’t wait to share with you. But I’m still pretty disorganized in my head, and I know I’m missing things here and there, so if you have any questions or think of anything you’d like me to cover here, just let me know.

Bet you finished your snack by now, so I’ll stop yapping. Until the next post…

On our way to Mayo

So if I can do this without getting totally carsick, I’m going to try to do a journal entry while Rich drives us to Rochester for our first day at Mayo. Today should be pretty easy: blood work, something called “computer”, and a ton of pictures of my eye, including a fluorescein angiogram. I had that last week – they shoot you up with dye and then put an industrial strength flashbulb one inch from your eye and flash it at you while you look various directions. Not enjoyable, but not hard either.

For those of you not on Facebook with me, I had tests done last week to see if the cancer has spread. At this point I’m not expecting to get my results until Wednesday when I see my oncologist. I’m not happy about waiting, but it doesn’t look like I have a choice.

Ok, ok, I’ll try to do the backstory now… This came completely out of the blue. Would it be inappropriate to say it blindsided me? Well anyway, I noticed about a week and a half ago that I had this weird shimmery effect in the periphery of my left eye. Then, the next night when I was lying in bed, I noticed a small shadow in my vision. The next day I looked it up on google, and after brushing off ocular melanoma, saw detached retina as a possibility. Now, my mom has had a retina tear, so I decided I’d better get in to the doctor in case I had that. That is the only reason I went in, because the symptoms really weren’t all that bad. The ophthalmologist examined me and was very quiet. When he finished he said, “I’m going to take some notes, and then I’m going to talk to you.” My heart sank a little. I knew something wasn’t good. He turned to me, and as gently as possible said, “There’s a mass.” He went on to explain that he was very certain it was melanoma, but I needed to see a retina specialist to confirm the diagnosis. He said a lot of other things too, but I don’t think I heard them, because by now I had this tingly, weak feeling flooding me from my head to my toes. I was getting hot and cold and the doctor’s voice was echoey. He said he understood I probably had a lot of questions, but I really didn’t. I was too shocked, too numb. He said he would pray for me.

The next day I went to the retina specialist and he confirmed the diagnosis, and gave me a card with the name of my ocular oncologist. That was the first time it hit me. I looked up at Rich, held up the card and whispered, “I have an oncologist.”

After that it was a whirlwind of telling people and making appointments for tests. Then, in the middle of that, we got a text from Riley: a classmate had died in a car accident that morning. We went and picked him up from school, because the one-two punch was too much for him. It’s still proving to be a weighty thing for him as he grieves the loss of a friend, and fears the loss of his mom.

His friends have been amazing. And his teachers too. And his small group leader. And his coach. His school counselor….We are grateful.

We’re arriving in Rochester so I’ll leave the writing for now. In future entries I will explain what I know about ocular melanoma, as well as my treatment. Let me know if there’s anything else I need to cover – I’ve been so scatterbrained from the stress and not sleeping and eating that I can’t always remember what I’ve told people. Thanks for being patient with me 🙂