Scans and Plans

An update on phase 2 of this adventure

The humidity here has defeated plans to walk outside, so my friend Frith whisked me to the mall where we could lean into our Mall Walking Ladies sensibility and get in some good quality steps.

The past two weeks I have done much napping and chatting in this phase of recovery. What I have not done is much texting or typing, so getting an update written and posted has taken a while. Let’s dive right in!

Treatment News

Surgery recovery: I had a follow-up appointment with the surgery team a week ago, and they were very happy with how well I’m progressing. My new hardware seems to be cooperating, my scar looks great, and I’m feeling good.

** Prayer note—Pray that the bones will fuse properly to their new scaffolding and heal well. It takes months for that fusion process with healthy bones, which mine are not. I’ll need to continue being careful not to damage the fusion for a long time.

Occupational/Physical Therapy: I’ve had a home health team of OT and PT visitors, and today I graduated! There was, alas, no certificate or cap and gown or processional music. But there was enthusiasm for how well I’m managing and a review of safe movement patterns to protect my spine while it’s healing.

** Prayer note—I’m gradually increasing my walking, which is going well. My balance has definitely regressed, which we expected with the surgery and break from neuro rehab exercises, so pray that the balance will also improve as I’m able to add in more exercises and walking practice.

Radiation Therapy: I met with the radiation oncologists last week to review their recommendations for treatment following surgery. I was a less-than-enthusiastic potential patient. After three previous rounds in the past five years, I did not feel like I wanted any more trips on that fun ride. The doctor was patient with my many questions and gave helpful, clear answers, especially to the “Why or why not?” question, and after an extensive discussion we agreed with their assessment that it does in fact make sense to do this and to do this now. The hope is that after the surgery the radiation will be able to hoover up the remaining active cancer in that part of my spine.

This treatment will use stereotactic radiation, which to quote Cancer Research UK: “Stereotactic radiotherapy (SRT) gives radiotherapy from many different angles around the body. The beams meet at the tumour. This means the tumour receives a high dose of radiation and the tissues around it receive a much lower dose.”

At the end of last week, I had my planning scans, which was an extensive process of bloodwork, CT scan, MRI, and bean-bag molding. Yes, a bean bag. For a morning spent at the Cancer Center getting poked and prodded and flopped about, it was delightful. At the end of it, I told Dave that I had a whole group of new best friends.

Fun Time #1: I had to have an IV placed for the scan contrast. Normally I don’t mind IV’s, but I had a terrible time with them in the hospital with three that failed and one hematoma that has left my arm still several shades of swirling cerulean. So … not looking forward to another IV. But Nurse Andrew, who was an angel in the form of a burly, bald, bearded dude, put in the smoothest, easiest IV I think I’ve ever had. And we got to chat about his child starting kindergarten that week.

Fun Time #2: Nurse Lauren walked me down to the CT scan room. She had the most glorious glossy mane of long auburn hair and I was really tempted to ask her for conditioning secrets. She said that they would be putting marks on me, and I said oh yes, I know—not my first radiation rodeo—I’ll soon have enough tattoo marks that I can play “connect the dots” on my torso. “Oh, we don’t use tattoos anymore,” she told me. “We just use a Sharpie and then put a sticker over it.” I was mildly disappointed that I couldn’t trot out my old joke about getting a panda tattoo instead, but overall a Sharpie mark seemed less invasive.

Or so I thought, until I got home and actually saw my Sharpie marks! I have about 10 thick, long lines of marker in both black and green all over my torso! They aren’t dots at all. THANK GOODNESS those are not tattoos! [In the photo above, you can see part of one of Sharpie marks. Imagine about 10 more of those, each several inches long.)

Because stereotactic radiotherapy requires such precision, they have to make sure you are completely immobilized in the position for treatment. For a spine treatment that means I had to lie on a special bean bag, and then Lauren and another nurse wedged it tightly around me to form a tight mold. I’ll have to lie in my bean bag for treatment. It’s not uncomfortable—except that because it is so tightly molded I can’t easily get out of it. For my planning scan session, they decided that rather than have me get out after the CT scan, get back in it for the MRI, and then have to haul myself out again, they would just do a table transfer.

While we were waiting for the MRI table to come, those two angel nurses let me choose music to play and said nice things like, “You look so young!” and “You’re walking so well!” and “Your music is fine and not driving us crazy!”

Fun Time #3: Angel Nurses Patrick and Wanda arrived to slide me on to the MRI table and roll me to the MRI room. We talked about music and concerts and how I was disappointed that I can’t make it to a great show with my son in Edinburgh in a few weeks. Patrick suggested I tell them I want to be wheeled into the arena in recliner, but I’d have to stay out of the mosh pit. Wanda and I laughed. Turns out that Patrick is from the area near where I went to high school and dated a girl from my town, and we bonded over how much we do not miss living near snow belts and six months of winter. The MRI was long, but Wanda let me choose music again and chatted occasionally to be sure I was OK. At the end, they maneuvered me out of the bean bag, and to seal our new friendship status Patrick complimented the cool shoes I was wearing. Nurses and medical techs, you are just the best.

Treatment starts next week, and I’ll have three sessions total, one on Monday, Wednesday, and Friday.

** Prayer note—Pray that the treatment will in fact zap the active disease remaining in that area, that side effects will be minimal, and that travel back and forth will go smoothly.

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Amazing Generosity

Twenty years ago, July 2002, my sister-in-law Deborah flew to Chicago to help us move. We had a 5-month-old baby and were moving out of our apartment into a sublet for 6 weeks and had to put most of our things in a friend’s garage. It was not great timing for her—she had just broken her foot and was in a boot. After limping through airports, we then made her limp several blocks in Chicago because there was a restaurant we wanted to try. And she was on baby duty while we were packing and sorting and trying to organize this move. I never heard her complain.

Twenty years later, July 2022, she flew to Durham to help take care of me while David went to California for a conference. It was not great timing for her—it was five days after her family made a huge move to Tennessee and a week before her kids start in a new school. But she flew here from Tennessee and kept me fed and entertained and in clean clothes, and I never heard her complain about the inconvenience or the sacrifice.

Deborah is just one example of the amazing generosity and help that we’ve received that has made this entire project of surgery and recovery and treatment possible. My sister came to help for a week that coincided with one of the most demanding weeks of her work, and she pulled off working 50-60 hours while also supporting us. Friends offered places to stay, a car to drive, comfortable chairs, driving to appointments, preparing meals and grocery shopping, dropping off special treats, and some heroic drives from out of state to come visit and chat and share some time together. From cards to notes to super-cool care packages and more, we have been buoyed along by the outstanding community of people we are so blessed to know.

Super Deborah and I, somehow managing to not melt in the humidity of a North Carolina summer day.

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