The Crazy Lady has left the building!

Yes friends, I kicked the crazy lady to the curb, just before hopping into the car with Rich and speeding out of the Mayo parking ramp. After two very long and stressful days, we are outta here! (And before you worry that I assaulted someone, the crazy lady is a reference to my last post. Fear not. I totally passed my psych evaluation.)

The news is good! Very good! My chest X-ray, blood work and liver MRI came back clear, and my eye scans look promising. The tumor has shrunk in height, but not in width. Dr. Pulido said it’s very normal for tumors to shrink in height first and then in width, so this is fine. The one thing that was a little amiss was some fluid buildup around the tumor, causing the width of the tumor to appear wider when it’s probably the same. For this reason he wants to see me again in 5 months, rather than the typical 8 months, but assured me that he’s just being overly careful. He’s not worried, so I shouldn’t be either. In fact, he kept repeating “you’re doing well” throughout our entire appointment. He finally told me it was because I totally failed the handshake test. “When I came in and shook your hand, it was freezing. You’re nervous, I can tell.” Uh, yeah. Little bit. Feeling weak, a little numb and kind of buzzy (they turbo dilated my eyes again), I got up to leave and his assistant Kim, who I love very much, hugged me and whispered “congratulations.” And that’s when I lost it. Because that’s when it started to become real. After so many sleepless nights spent rehearsing possible scenarios in my head, the reality that I had just gotten the best one washed over me with that hug. The elation would come later. This was pure relief.

There is nothing more maddening than having THE BEST NEWS IN THE WORLD and not being able to share it. As I mentioned though, they had turbo dilated me, so I couldn’t see anything. I thrust my phone at Rich and quickly dictated a brief Facebook post (after calling my parents, of course. I’m pretty sure my mom’s been holding her breath for the last two days. Breathe, Mom!). And now that the knots in our stomachs had relaxed, we came to the collective realization that we were starving, so we went to grab some food. As we sat at the table, my phone kept lighting up, and each time it did and to Rich’s great enjoyment, I impatiently held it to his face and begged him to read it to me. This continued for the next few hours, until my eyes recovered enough to read the messages myself, and just about when I think Rich’s patience with being my seeing eye husband was wearing thin.

But oh, those messages! Over the last few days I have just been so overwhelmed by all the ways people have reached out to support me. The caringbridge comments, Facebook posts and messages, texts, emails, calls – I have never felt so completely surrounded and held close (except maybe when I’ve been in an MRI machine, but that’s different). I can’t even begin to express how thankful I am for those constant reminders that I’m not alone in this fight, those repeated assurances that no matter what happens, I am loved and supported. I’m also completely humbled by all the people who don’t even know me, but have faithfully lifted me and my family up in prayer. I wish I could hug you all.

Speaking of hugs, we’re almost home and I think I have some happy kids to hug. Of course, this is just one of the early miles in the marathon that is my cancer fight, but I just climbed a major hill, I’m on a really good pace and I’m looking forward to an easy, flat section for the next 5 months. Maybe a water stop too – it just won’t be Gatorade in my cup. ☺️

So grateful for you all,

Scans Tuesday

I almost titled it, “Scans tomorrow”, but just realized it’s almost tomorrow already, so that would be confusing. And speaking of confusing, I didn’t mean to be vague about my scan dates in my last post. I just said they’d be “at the end of the month,” and as a lot of folks are preparing to turn the page on their calendars, I’ve started getting inquiries as to whether I’ve had my scans yet. Fear not gentle reader, I did not have my scans and forget to post the results, I just haven’t had them yet. Sorry about the confusion.

imageSo yes, I head to Mayo tomorrow for a full day of fun – 5 appointments spread from 7:45 to 4:15 (and that last one is the MRI, so I don’t think we’ll be leaving until at least 5:30). We’re back at 7:30 Wednesday for one more exam, then finally results from the doctor, followed later in the day by one more appointment, after which we will hopefully be skipping happily back to Lakeville with good news to report. Two very early mornings, but I haven’t been sleeping much, so it’s fine.

I’ll be honest, this past week has been tough. Directing Godspell was a fantastic distraction, but as soon as it ended, the reality of what was coming hit me hard. And I didn’t even realize it at first. I actually thought I was doing pretty well, but then I found myself getting very snappy and irritable, my jaw and my neck started to ache again and I wasn’t sleeping. And the sleep deprivation and stress combo hasn’t exactly given me the grace of a gazelle, let me tell you (not that I have any inherent coordination usually, but most of the time I fake it well. Not this last week, and I have the bruises and scrapes to prove it). So yeah, we need to get these scans done and get on with life.

I know scans are going to be a big deal every time I have them, but I feel like these ones are particularly important. Because clean scans will mean that every little ache and twinge I’ve felt over the last few months are merely that, aches and twinges. It’s easy to start to panic that any random pain or discomfort is a sign that the cancer is spreading, and as much as I have tried not to succumb to the gravitational pull of hypochondria, well, I have to admit I’ve gone there a few times.

Me: Rich, I’ve had this side stitch feeling for a while now. I’m worried.
Rich: Why?
Me: Because it’s on my right side! And that’s where the liver is, I googled it!
Rich: Ok….
Me: What if it’s the cancer spreading?
Rich: What if it’s gas? You’ve been eating a lot of vegetables…

This crazy woman who has taken over my body needs to leave. I hope to be evicting her on Wednesday.

It’s really amazing though how many wonderful people I have surrounding me and my family right now, despite the presence of the crazy lady. Seriously, not a single one of them has fearfully snatched up their small children and run away. I mean I understand that crazy can be entertaining, but these folks are here out of love, I know it. And that is a very cool, very reassuring thing.

I included a picture from Godspell (and if I had any technical ability at all I’d have it inserted here, but honestly I’m just happy I successfully uploaded the picture). I wasn’t sure when I was diagnosed if I should stay on as director or not, but I’m so glad I did. The show, and the amazing people involved with it, blessed me more than I can say.

If you are inclined to pray, I would ask for your prayers Tuesday and Wednesday. Prayers for safe travel back and forth to Mayo (they’re seriously predicting snow. Seriously.), for scans to show that the tumor is responding to the radiation and that the cancer has not spread, and most of all for peace as we wait.

Thank you all for your love, support and grace,

The crazy lady
(leaving Wednesday!)

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.