April progress, good and bad

gollum
Sketch of Tolkien’s Gollum character, by Guillermo García-Pimentel Ruiz (public domain)

Summary: Although everything is finally in place for my clinical trial trip to New York next week (M-F), I saw Wednesday’s scan results this morning. The bone scan wasn’t much news, but the CT scan they compared to my PET scan that was done only seven weeks ago. I now have have a 7mm nodule in my lung (I will call it Gollum) and “numerous new hypodense hepatic lesions” in both lobes of my liver, the largest lesion measuring 2.4 cm. Also a little new (or enlarging) lymph node development. Sobering, but on with the trial. I don’t have a more attractive option at this point. Here’s hoping 225Ac-J591 does a number on my cancer cells.

I’ve had a very preoccupied couple of weeks getting everything lined up for my clinical trial trip to New York next week. It doesn’t sound that complicated. Book flights to New York, get a reservation for a place to stay, and … what else? A lot else.

First I had to wait for confirmation from Weill Cornell in New York of which days I needed to be up there. Only then could I buy a plane ticket. An expensive one, or rather, two. The other one was for Liz, as she planned to accompany me. However, she’s now not feeling well enough to come along, so I had to cancel her ticket. We are sad about this. But I had a ticket for nonstop flights between Knoxville and LaGuardia, so one hurdle cleared.

Then there was the small issue of scans. Before I arrived in NYC, they wanted me to have a CT scan and a bone scan done here in Knoxville, sending the results to them. First I had to wait for the doctor’s orders for the scan. Once I got those, I called the hospital where I’ve had those scans done before. They seemed confused. And didn’t call me back. Finally I went over to the hospital with my scan orders in hand and sat there until a scan scheduler reluctantly materialized and talked with me. He said the scan orders say “clinical trial” at the top, and they’d already done as many clinical trial scans as they could handle, so his boss wouldn’t approve mine. When a clinical trial pays for a scan, they have to set up an account and use a different billing process. Or maybe they don’t make as much money–who knows?

“But aren’t these two scans just ‘standard of care’ that can be billed to my insurance?” I asked. Maybe, but they would need a precert number from the insurance company, or a reference number if they didn’t require a precert. I didn’t have either of these magic numbers. So I wrote back to the folks in New York, asking whether my scans were standard of care or not, and if they could get a number that would get me the scans. This was all late last Friday. The day after I caught a nasty cold that has wiped me out for a week.

The first reply I got said the scans were definitely standard of care, and the diagnostic labs they usually work with run the pre-cert through insurance. Unlike my hospital. So I’m stuck in the middle? I stew about it all weekend, watching Easter service on live stream and being too sick to go to Easter dinner at our son’s house. On Monday I decided to call my oncologist’s practice and beg for help. They said they’d be happy to help me. Right before I left to head over there with my scan orders (the email address they gave me to send them electronically didn’t work), I got an email from a new person in NYC saying they in fact DO run the precerts themselves, she’d run mine, and I didn’t need one. So she sent me the reference number.

Even so, I did not go back to the hospital. I went to my oncologist’s office. I handed over my scan orders and the reference number. They said they’d take care of it. And they did. I was scheduled to get my scans two days later (this past Wednesday). Not at the hospital, but another facility that is typically much faster and less bureaucratic. I love the oncology practice I go to.  A second hurdle cleared.

Simultaneous with the scan-scheduling excitement, I tried to find a place to stay in NYC for four nights. Teresa’s dad’s place, where we stayed during my last trip, wasn’t available as they had other guests.

Weill Cornell cheerfully told me that there’s a nice huge tower right across the street from them where I could stay. Only $300 per night. More ominous was the word “Helmsley” on the building (it is the Helmsley Medical Tower). I don’t know if it was named for Leona Helmsley, but she and we go way back. Long story. Now I avoid anything with that word on it. But it was too expensive anyhow.

AirBnB was my next choice. The place I liked the best had two flights of stairs to climb, and I knew that would be no fun for Liz (when she was still planning on coming).

So I did more research and ended up on the phone with a helpful fellow at the American Cancer Society (ACS). They have a FREE place to stay called Hope Lodge. But if there was no space available for my stay, they also have a program with participating hotels to offer much lower rates to cancer patients. Was there room at Hope Lodge, I asked. He couldn’t tell me. They first require a referral from my doctor. Typically a social worker handles that, he said. But the hotel deals didn’t require the referral, so they could work on it while I worked on getting a referral for Hope Lodge.

“When will I hear something?” I asked.

“It may not be until next Friday [today!],” They said.

This was only a week ago. So I might not know about my accommodations until three days before my trip. What else could I do? There was always the option of sleeping in Central Park if I didn’t get caught, but for all I know, benches in Central Park rent for $200/night. While I waited to hear back from the ACS, I did my level best to track down a social worker at Weill Cornell and eventually got a call from one, a nice woman who knew exactly what she needed to do. She filled out the Hope Lodge referral form, would get the doctor’s signature, and then contact the ACS. Another thing to wait to hear back about.

Meanwhile, I was checking remaining affordable AirBnB properties–tiny shared bedrooms with strangers that were under $100/night. And shared bathrooms. And me still with major GI issues. Not ideal.

Midweek, the ACS called to say I was waitlisted for Hope Lodge but there were people ahead of me on the list. However, they got me a much reduced rate at a Courtyard Marriott and had already booked it for me. A third hurdle cleared.

By the end of Wednesday this week I had a plane ticket, a hotel reservation, and two completed scans. What more could I need? One more thing. Next Thursday, the same day I’m scheduled for the clinical trial treatment infusion, I am also scheduled for a bone biopsy, a pleasant affair where they stick a “drill needle” into a cancer lesion on one of my bones (I have many, growing lesions) and take some of the bone cells out for analysis. They don’t give them back to me afterwards.

The hurdle was that they would not perform the bone biopsy if there was no identified person who would escort me safely away afterward. They would not release me alone. So I started thinking of crazy ideas like hiring a pre-med student off of Craiglist to keep me company for all my appointments that day. But Teresa again came to my rescue by suggesting that their son Tyler might be interested.

In fact, my nephew Tyler was very interested, called me right away, and said he’d be happy to take a day off of work. He would spend the day with me, coming along for my treatment infusion and being a second pair of ears at my doctor’s appointment. In addition to springing me from the bone biopsy holding cell. A fourth and final hurdle cleared.

I could now allow myself relax a bit before my trip and do my best to shake free from this head cold. But for me it’s never that simple. I got curious about whether the radiologist had read my scans and sent them to NY and to my oncologist here. I called locally and found that the reports had at least been sent to my oncologist here. So I drove over to pick up copies because, well, I was curious, and I wanted to scan and email the documents up to NYC just in case they hadn’t received copies.

My curiosity killed my relaxation (as I no longer have a cat). The bone scan showed some progression over my last bone scan, which was a year ago. I expected that. Especially there were new lesions in my right hip and at the top of my right femur, which had been hurting. Notice I said “had”. When I caught my cold, I stopped my exercise classes. After a week of sedentary coughing and nose blowing, my hip no longer hurt. Hmm. Change my exercise routine? I must investigate.

But the CT scan held scarier news of metastasis to new lymph nodes, a lung, and my liver. And this “soft tissue” progression had all happened in the seven weeks since my PET scan at the beginning of March. Sheesh. Slow down, cancer, would you?

Spread to lungs and liver is disconcerting, though I haven’t yet reviewed these reports with my oncologist to find out if it’s really bad, somewhat bad, or not too bad. Today (Friday) I’ve been going through my usual reaction to bad cancer news—sadness, thinking I don’t have long, and wishing I had the energy to do the things I want to do–tidying up my files and photos, making sure the right people will have the right passwords, and all that stuff.  Will I live long enough to see my book finished? I want to visit family (not doctors) and spend time talking with friends (not insurance companies).

I will end this post with (mostly) good news. The husband of a friend of mine is an artist–I like the abstract work he’s done, and I have one of his prints in my office. I asked him if he would be willing to supply art for my book cover, as I want something abstract rather than a photo of a happy cancerous person walking two miles or even a lovely forest path bordered by fir trees. I need abstract. Something that captures dark irony and underlying joy at the same time.

He said he’d be happy to work with me. Then five trees fell on their house. Really. There was a tornado near Chapel Hill where they live, and they (or their house and chicken coop, rather) got the worst of it. The three of them (they have a little girl) were not injured, thank God. But they have a major project putting their house back together. I wrote, saying he shouldn’t worry about my book cover–he had weightier matters to attend to. However, he still wants to do it and sent me some photos. I feel very sorry for what the family is going through. And I will be delighted and honored if I can feature his artwork on my book cover.

In other happy news, my hotel is very close to the Morgan Library, so I can finally visit the Tolkien exhibition there. I will be even closer to the New York Public Library, another must-see for me.

This has been a long, long post. It has been a long, long two weeks. If you’ve read this far, I suggest using the bathroom soon, and then eating some ice cream. My sincere thanks to those of you who have been praying for, thinking of, or encouraging me. Please keep it up.

12 Replies to “April progress, good and bad”

  1. Thank you for sharing so deeply and honestly. I’m praying for you!!! Hope Liz feels better soon as well!♥️🙏♥️🙏

  2. Mark, I appreciate your humor and honest assessment of this ordeal. We are praying for the clinical trial to go well. Ed

  3. Mark, best of luck with trial, yes I was going to mention about free housing for traveling cancer patients thru ACS, but you covered that..sorry to hear about scans, you will prevail, we are Warriors.

  4. Great writing 🙂 Really sorry you have to wade through so much bureaucracy, but it does sound like you have a lot of support and caring people. I hope your clinical trial goes well and you enjoy the Tolkien exhibit.

  5. Mark,
    Thank you for sharing your walk through this faith-challenging process. I love you and Liz; I’m upholding you before the Lord of grace.

    David

  6. I am looking into this trial for my husband. The results sound very impressive. Please keep us updated on how things go. We hope to be following the clinical trial soon.

  7. Blair, the best way to keep updated is to “follow” this blog. I will post updates here. You can follow it by entering an email address in the space for it, near the top of this page. If you haven’t gone to Weill Cornell for an initial appointment, I would do so ASAP if you can. There is a lot of interest in this trial and not too many slots.

  8. Wow! What a bunch of red tape stuff to wade through! Praise the Lord for clearing the path n for all the helpers along the way. I think I want to support the ACS. You and Liz are always in our prayers. A big hug, Ginger

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