Hey everyone, sorry for the wait. I really did intend to do a more comprehensive post last night, but once we got home I was so exhausted all I could manage was opening a bottle of wine and making dinner (in that order, thank you very much. Ok wait – first I hugged my kids, and then I put on sweatpants. THEN I broke out the booze. I know, I know, nice way to celebrate a healthy liver…). And now I have family visiting, which is awesome for me, but not for anyone who was hoping to get some more details on my day at Mayo.
It’s a weird, surreal thing being at Mayo. It’s like time completely freezes. You never go outside because all the buildings are connected by this huge underground level. And there are shops and restaurants down there, along with tons of other things, so you really don’t have to leave. And all around you is this mix of sterile, professional doctors and administrator-type people, and tense patients and families. There is a palpable sense of emotions being held back as we all swim in this weird dimension where there is no time. Which is probably why it is such a jolt to return home, to a place where time as been happening while you were gone, and now you have to somehow re-enter it. It’s like suddenly having to jump onto a moving treadmill. Which is hard, because after all the physical and emotional exhaustion, all I want to do is find a quiet place to just sit and reflect. To exhale slowly and say to myself, “Ok, so what really just happened?” I feel like I should take a walk in the woods, or sit on a bench overlooking a lake or something. Instead I jump onto the treadmill and sprint to catch up. It’s all good – I’m grateful to be living a full and busy life – it’s just an awkward transition sometimes.
So it was a looooong day, but it was only one day (not two, like before), which was very nice. All of my did-the-cancer-spread tests were in the morning, then we had a break before we headed up to ophthalmology for the rest of the day. That’s always tough because they turbo dilate me right away, leaving me with nothing to do but observe the other people in the waiting room (more about that in a later post) and listen to bad musak (“Nadia’s Theme” AGAIN! Seriously, they need to get some more uplifting music).
Some things about the opthamolgy department don’t change. I see a lot of the same nurses, doctors and techs. I was in the same exam room for my visual acuity check as I was last time – I know this because there’s still a sticky note on the desk with words scrawled in red sharpie: “If you ‘borrow’ it, bring it back!” The same woman dilated me, and the same guy, ZB, did my eye ultrasound (maybe it’s Zeebee or Zibi, I don’t know. By then I can’t read name tags). He makes having an ultrasound wand pressed really hard directly onto my eyeball actually rather tolerable – a sweet man with an awesome Russian accent, who likes to whisper to himself during the exam. “Now I have to find scan I like and I measure…” He always makes a joke about the chair having an eject button. And I know that when I see Dr. Pulido, he will be wearing a cool tie, cooler glasses and fun socks. Oh, and my favorite: I know that at the very end of my stressful, emotionally exhausting day, when I finally know my results and am walking out of the exam room, Dr. Pulido’s assistant Kim will give me the world’s most awesome hug.
I find all this sameness very comforting.
I was also comforted and encouraged by all the messages of support and love – comments on my post here, facebook messages and comments, emails, texts and phone calls – it was amazing. I felt so completely surrounded (in a good way), it just warmed me from the inside out. So thanks to all of you who reached out. And thanks to everyone who sent thoughts and prayed for me. I continue to be blown away and deeply humbled by that. I felt those prayers, I know I did. And the ways God has shown up big in this whole thing is material for another post. Suffice it to say, He rocks.
Ok, so details – you thought I’d forgotten about that, didn’t you? All right, you may have been correct. I did get off on a tangent a bit there. Well as I nervously sat there in the exam room for my last appointment of the day, waiting for my results, with my heart racing every time I heard footsteps near the door, suddenly Dr. Pulido threw the door open and burst into the room. Before he was even fully in the room, he grabbed my hand excitedly and exclaimed, “You’re doing GREAT!” Oh, those are sweet words to hear, and the best way ever to see your oncologist! He proceeded to tell me how fabulous my scans and lab work looked, and then he pulled up the pictures of my eye – side by side with pictures from back in December. Quite honestly, I’m never really sure what I’m looking at. It kind of looks like the Death Star with a big, ugly cloud of smog over part of it. But Dr. Pulido was very excited to show it to me. The tumor is thinner now, which is fantastic, and the base hasn’t gotten any wider. Apparently that won’t shrink until the tumor gets thinner, and this is normal, so it’s all good. But what he was positively ecstatic about was the color. “Do you see the change?” he asked. Ummm…yes? It was pretty subtle to me, but to his trained eye it was a dramatic and definititive shift to a “battleship gray” color. “That means it’s dying. We hit it hard.” Sinking the battleship. Oh yeah.
So my tumor is sinking – I mean dying – and my scans showed the cancer hasn’t spread. I don’t have to go back for 6 months now. The only negative bit that I encountered in the whole thing was the realization that my oncologist and my rheumatologist do not see eye to eye on how to treat my RA (oh ugh, totally unintentional pun). So this is going to be an ongoing project: trying to bring the two parties to the table to negotiate. So far, we’ve been doing this whisper-down-the-lane thing with me and the doctors and their asssitants, but I’m going to have to find a way to get them to talk directly with each other. Maybe I’ll have to enlist my fearless internist to act as secretary of state, brokering a deal. Whatever it takes. We just need to find a way to treat my RA without compromising my immune system to the point that I’m at greater risk of the cancer spreading. And it would help if they agreed.
But, that’s a project for another day. I’m still celebrating the sweet victory of clear scans and a tumor on the run. I’ve never been a big fan of the color gray, but I kind of love it now.
Thanks again for going on this journey with me! I hope you’re savoring the victory too. Score one for my battleship-sinking army!