Radioactive Me

Nephew Tyler after our big day on Thursday, and after Italian food.

What a week. After two weeks of being sick while trying to arrange everything for this past week, this past week actually happened, or is almost finished happening. I’m writing this on my homeward flight Friday afternoon. Summary: I got the clinical trial drug yesterday afternoon. The trial only has a single infusion, so all my future NY visits are for follow up. In three months they will scan me and see how well it is working. Main objective achieved, through the help, prayers and love of many. Thank you!

Last Sunday and Monday, I was able to pack for my four nights in New York. If I start a day earlier than I otherwise would have, make a list, and allocate two to three times as much time and energy as I used to need, I can pack without forgetting anything major, and without taking too much more than I need. I do end up going up and down the stairs too many times, in part because I don’t always keep my objective in mind. If I see or think of anything else, I may well forget why I’m doing the stairs yet again. (And please don’t tell me, “Oh that happens to me all the time! You’re just getting old.” It is a big change for me, and it’s not because I’m 61.) I was ready ahead of time, so I could sit around saying prolonged good-byes to Liz and the puppies. My good friend John picked me up to drive me to the airport.

I had a few main anxieties going into this trip. One was my GI issues. When my stomach is acting up, an airplane isn’t my favorite place to be. A second issue was how my energy level would be during the trip. Being in and traversing New York is exhausting, both physically and mentally. Finally, I was concerned about whether any last minute lab test or biopsy result would make me ineligible to participate in the clinical trial.

For the GI issues, I ate very little food before my flight, and increased my steroid dose. Success. For my energy level, I bought a cane, requested a wheelchair at the airports, and decided to just take a cab to my hotel instead of taking a bus, then a train, and then walking. Having a nonstop flight into LaGuardia helped. The flight is under two hours, and LaGuardia is the closest-in airport. I made it to my midtown hotel by 3:00, checked in, unpacked everything slowly into the closet and drawers. Then I took a rest.

My nephew Tyler lives and works in the city. He planned to accompany me to my Thursday appointments, but he also offered to meet me for dinner as often as I wanted. So Monday we went to a German place that was a short walk from my hotel. I like German food: sausages, sauerkraut and potatoes. We shared a piece of apple strudel for dessert–I think the one piece weighed about a half pound.

The dinner was delicious, but I paid for it during the night and in the morning. Too much fat, too much fiber (sauerkraut), and really just too much food. But by the time I needed to leave for my 9:00 AM Tuesday scan appointment, I was done with the bathroom for awhile. I walked a third of a mile to the Q-line subway, went to the wrong platform, then corrected myself. I took the subway to the Upper East Side, and walked the half mile to Weill Cornell Medicine for my Gallium PET scan. En route, I saw my first NY dog of this trip, and it was a Cavalier King Charles Spaniel, Blenheim coloring like our Lord Digory. I took this as an encouraging sign.

Like all medical appointments, this one began with the ritual of filling out forms with information I’ve provided before, signing consents I don’t care about, and then sitting in the waiting room until they were ready for me. They started an IV (after two tries), injected the Gallium radioisotope, and then I sat there for a couple of hours letting the Gallium find all my cancer cells.  I changed into a maroon Jedi robe, leaving all my real clothes and possessions in a locker. Then came the PET scan. It took about a half hour, but it wasn’t bad–I didn’t have the sore tailbone issue that had afflicted me during my last MRI. And at 1pm, that was it for the day.

No lunch to speak of. I walked back to the subway, found my way back to midtown, walked to my hotel, ate some peanut butter crackers, and rested. There was enough of me left to do something I’d wanted to do on my previous trip to NY but hadn’t had time: I went to the Tolkien exhibition at the Morgan Library and Museum (another short walk from my hotel). As a lifelong reader of Tolkien and collector of his books, whether published during his lifetime or posthumously by his son Christopher, or by others, I figured there wouldn’t be too much I hadn’t seen before in a book. But there were a couple of surprises. (If you have no interest in Tolkien, just skip the next four paragraphs.)

Much of the exhibit was Tolkien’s art, illustration and maps, along with some interesting handwritten letters and invented scripts. I had seen most of his illustration in books I have, but seeing the original work was more vivid. There was one illustration, “Lothlorien in the Spring”, I went back to look at three times. It is my favorite. I also liked his small, mysterious drawing of an owl, “Owlamoo”, which he drew according to his young son Michael’s description in order to help him get over his nightmares and nighttime fears.

So there I was, walking slowly along the walls, as one does in a gallery crowded with other people. And suddenly I’m looking at a black and white photograph of Joni Mitchell and her husband Chuck. Apparently they had some correspondence with Tolkien, asking permission to use some people or place names from his books as names for a recording label they wanted to start. I didn’t know that.

Another item I hadn’t seen before was a six-page typed letter to the Scottish novelist, Naomi Mitchison, answering at length some questions she had about the Lord of the Rings. Mitchison was one of the proofreaders for The Lord of the Rings. The letter is in a private collection, so I don’t think it has been published anywhere. And photography wasn’t allowed, so I couldn’t make my own copy.

The exhibit was very well curated, with most of the materials drawn from the Bodleian Library at Oxford or the manuscripts Tolkien sold to Marquette University. I thought about buying the exhibit guide, because the book had information and items beyond those on display. But I have other books about Tolkien I haven’t read yet. And this one weighed about five pounds! The Morgan gift shop had many cat-related items. No dog ones. I asked about this. People who come here, she said, like cats. I said I used to be a cat person. What changed you, she inquired. I showed her a picture of dogs. She understood.

Tyler and I met for dinner again, this time for fried chicken in a K-town Korean food court. It was delicious. It was bad for my GI issues. Will I never learn?

Wednesday, I had a repeat Gallium PET scan, for the good of science, to help establish the reliability of synthesized Gallium or something like that. But afterwards I met up with the clinical trials nurse for my blood draw. Eleven tubes of blood. That’s a record for me. She also showed me where I’d need to go for my treatment after my bone biopsy the next day.

I bowed out of Wednesday night dinner with Tyler and sensibly bought some yogurt and rolls at the nearby Whole Foods. And three bananas for a dollar from a street vendor fruit cart. This was all much better for my digestion. To and from Whole Foods, I walked through Bryant Park, which is directly behind the New York Public Library. Bryant Park is beautiful and crowded. A dance band was setting up and teaching the crowd (mostly young tourists, I think) how to dance. It was not warm and sunny in NY, but that doesn’t keep people indoors. In fact, one day it was 88 degrees at home in Knoxville and 30 degrees cooler in NY. I wore my coat every day.

The big day, Thursday, finally arrived. I had to be at the hospital by 6:30 AM for my bone biopsy. I took a cab instead of the subway, because it was too early for my usual trains to be running and I wanted to conserve as much energy as I could for my long day. I arrived at 6:15 and found the Interventional Radiology department. I filled out forms. I waited. Then I went back, had my vitals checked (of course), and changed into a hospital robe. They started an IV, but then put me on a CT scan bed. They did a quick CT scan of my pelvis, as that’s where they were going to drill me with the 4mm diameter drill needle. I thought that seemed quite a large needle. They assured me it wasn’t

As they were getting ready to give me my local anesthetic, a doctor ran in saying he’d had a late-night message from my doctor, who wanted liver and lymph node biopsies instead of a bone biopsy. Okay then. Smaller needles, so I as happy. They took some samples from a large lesion in my liver (2.4cm in length), and they drilled an enlarged axillary lymph node under my left arm. Neither hurt much and the procedure was quick. But of course I had to be kept under observation for a couple of hours to make sure I didn’t have a bad reaction to the local anesthesia or explode or whatever. I convinced the nurse to leave my IV line in on the off chance that my treatment appointment could use it so I wouldn’t have to get poked again.

By this time, nephew Tyler showed up, so he sat with me during recovery and we chatted about things medical. They would not release me from Interventional Radiology without an escort. We next tried to find the place I was supposed to go for my clinical trial treatment. I didn’t remember exactly where I was supposed to go, but everyone I talked to thought I should check in, even though I remembered being told not to bother. But I checked in. Then Tyler and I sat in the Nuclear Medicine waiting area for about 20 minutes. Nothing happened.

So I emailed my doctor, and in two minutes he replied, saying I was in the wrong place and someone needed to take me to the CTSC research area, which was just one hallway over from Nuclear Medicine. Someone finally took us there.

Then, of course, they took my vitals for about the fifteenth time that day. They were happy to use my existing IV line from the morning (yay!) and took another tube of blood for a genetic test they wanted to run. Then we waited. A long time. There was someone ahead of me getting, I believe, the same treatment. They had some problems with his IV and had to restart everything. This took a long time. Meanwhile we talked with my doctor. The most interesting part of that discussion was his statement that the cancer lesions in my liver appeared to to be all or mostly necrotic (dead). This seemed a good thing. Maybe the Keytruda got them. Then we waited longer. Finally I sent Tyler out for a walk as he looked sleepy, and my ability as a conversationalist was flagging.

He came back as they had just started putting the clinical trial drug, 225AC-J251, into me. There was a medical physicist with his Geiger counter there, making sure the drug was making its way down my IV line, into my arm, and then collecting in my heart area initially (rather than staying in my arm, which would be bad). Tyler and I asked him to turn on the beeping part of the Geiger counter so we could listen. He gratified us. Briefly. The Geiger counters I’ve seen in my medical adventures all look like they were made just after WWII. The physicist told me even the new ones look the same. Why mess with perfection?

All went well with my infusion. Afterwards, they hung up a 20-gallon bag of saline to drip into me while they observed me for two hours. Well, not 20 gallons, but it was big. I wheeled my IV pole over to the bathroom several times.

They explained to me my discharge instruction. I have to be very careful with my urine for the next two weeks, as most of the radioactive isotope will be departing my body through that channel. I need to flush twice. I need to wash my clothes and sheets separately. If I’m going to read a book or handle something for a long time, I should wash my hands first. I should shower freely. I don’t know what that means, but I plan to enjoy showering freely. Life’s little pleasures.

The half-life of the 225 Actinium is six months. So if I do contaminate something with that radiation, it could be contaminated for a long time. I will be careful.

We were finally released from the hospital at 5:45 PM. An 11-½ hour day at the hospital for me. I had only a little lunch–packages of crackers, some fruit cups and applesauce. So when we left, we found a good Italian place. I tried to eat sensibly. But it is so difficult to get non-fatty, heavy food at restaurants, especially when you can’t eat salads or other high-fiber foods. Back in my room, I distracted my overtired mind by playing Minecraft.

That night I was awake from 4-5:00 AM with GI amusements. I finally fell back asleep and woke up at 9:45 AM. I haven’t slept that late in eons. It was wonderful. I showered freely, finished packing, checked out, and bought some yogurt and a brioche to go with my coffee for breakfast. Despite my sleeping in, I felt too tired to visit the Museum of the Dog, another nearby attraction. I was certain their gift shop wouldn’t just have cat items. But I took a cab to LaGuardia instead and got wheelchaired out through TSA and to my gate.

At the gate, I started working on my next trip to NY–next week! I have four trips in May. Next week’s appointment, on Thursday, will be short, and I’d planned to just stay one night. But the fares I was finding were over $1000. Discouraging. In the midst of discouragement, amazing things can happen. A generous friend of mine bought me a roundtrip, nonstop ticket using his frequent flyer miles. I can’t imagine anything I do or have done to deserve such largesse. So I had no choice but to accept it as undeserved favor. What, in Christianity, we call grace. It’s humbling. I called the American Cancer Society to see about a discount hotel room and they will let me know. There have been other such graces recently–people offering hotel points, sticking cash in my pocket at church, offering to troubleshoot travel arrangement problems for me, or sending us a check in the mail. I mention these not to brag, because, as I’ve said, I’m undeserving. God is good, and has provided abundantly in so many ways.

I made it home on time. Liz met me in the airport–so happy to see her after a long week apart. Once we got home, the two dogs jumped all over me, briefly, and then ran outside to play. They live in the moment.

If you’ve read this far, have a mango popsicle. You deserve it.


15 Replies to “Radioactive Me”

  1. I look forward to seeing you back at CSC on Monday evening. Hooray for necrotic lesions.

    You may have my mango popsicle-I am one of the odd group for whom mango tastes like fish. Frozen fish on a stick has never been my obsession.

  2. Mark,

    Praise the Lord! You’re back home and in the midst of a long distance NYC commuting “adventure”. I’m happy to hear that some bad things in you are dead and that bananas can be digested. 🙂

    Btw – your writing (both style and content) is fantastic.

    Your brother, Alan

  3. Enjoyed reading this update about your trip to NYC since I live here! Hope you get to the Museum of the Dog the next time! Would love to hear about that! Wishing you good success with your new treatment! Enjoy your visits to NYC! We welcome you!

  4. Sounds like a rough week! At least with all the up and down stairs you get extra exercise? Stairs are difficult even at the best of times, though, so I imagine it’s even less fun for you. Especially with the frustration of unaccustomed forgetfulness. I’m so glad you are able to take little things and find the humor or pleasure in them! Praise God for all His mercies to you in this time!

  5. What a week it was. I am amazed with all you are going through that you remain so organized and analytical. As you know, you are in my prayers.

    1. The organized and analytical part, which used to be my strong suit, only happens if I clear the deck and proceed very slowly and deliberately. And give myself mental breaks. But thank you!

  6. I’m keeping a list: Necrotic lesions, Tolkien, good dinner, better pastries, family and friends loving you, dog museum to look forward to, controlling what you can. Yep. And a side bonus: gifted writing. Oh, and cavaliers and Liz to come home to. Not in that order.

  7. I am exhausted just reading about your week. Good to hear you are finding ways to make getting around easier and that you always find time for some joy in your life. Will you be seeing the Tolkien movie?

  8. Very interesting story, Mark, e..g., about the Tolkein stuff. Also the PET scan (I had one a few years ago; as you may know or could guess, the machines cost millions of dollars) and the eleven tubes of blood (you blew me out of the water; I was in a clinical study for a long time, but it was for only a minor variation on the standard of care, and I’m pretty sure they never took more than seven tubes, if that). But hey, I think I have you beat in terms of lesion size: my big one was over 9 cm! So I’m not impressed with your 2.4 🙂 .

    In terms of chemo brain, I was a lot luckier than you. Of course I was luckier to get multiple myeloma in the first place instead of your nasty prostate thingy.

    But by far the main thing, of course, is you got the drug! I’m sorry I’ve forgotten, but is it immunotherapy or some kind of personalized medicine? A close friend of mine — Craig Stewart; you probably met him in your IU days, no? — was diagnosed with Stage IV colon cancer about 15 months ago. Not the preferred type of cancer or stage. He’s in an immunotherapy trial now and is doing very, very well. So…

    Oh, w/r/t undeserved favors, I don’t think many of us “deserve” them; fortunately there’s a lot of grace in the world!

    1. Sorry it took me so long to approve your comment, Don. WordPress initially decided it was spam, so I didn’t see it. No idea why….

  9. It’s interesting that both you and my husband are drawn to NY for care at this time. There are so many things I love about NYC but I never thought of it in this way!
    You are never alone. Thank you for your blog, taking your friends along with you. Enjoy the rest and welcome at home!

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