Test and Test again (and again)

As you might imagine, there's a lot of testing before you undertake a stem cell transplant. It's an intense procedure and before they put you through it, it's understandable that they want to make sure all your major organs are working well. 

And the joy of this start and stop and start process is that I got to do most of that testing twice, or even three times. The first time I went through the process was in late October in anticipation of a November auto stem cell transplant. When that plan changed , I got set up to go through the process all over again in late January. Fortunately, I did not have to do another bone marrow biopsy. 

Given how well I've been feeling, most of the tests were little more than an inconvenient interruption. Echocardiogram - long and annoying but hardly uncomfortable. EKG - short and easy. Lung volume test  - interesting the first time; annoying the second. Blood work, urinalysis, cheek swab -- check, check, check. All pretty routine, although collecting 16 vials of blood was a new record for me.  

And this second go round on all those tests didn't give me any pause for concern. I've felt healthy, wasn't feeling pain (save for my ongoing calf tightness), and I could actually feel myself getting better. So I knew I'd ace the heart and lung tests; was very confident that my blood work would reveal no surprises. (Sure enough I've found out twice that I'm HIV negative among other things). No, the only thing that kept me up at night was the PET/CT Scan. 

Of Two Minds

When it comes to anxiety over scans, I'm of two minds. I say that, almost literally. In the soothing light of the day, my rationale mind is in control. So when my back twinges with pain, I can logically connect it to too much time hunched over a computer, or relocating a backyard shed, or just the simple fact that I'm getting older. But in the unknown dark of night, my wilder imagination takes over, and I bully myself into believing that my harmless aches are harbingers of cancerous doom. After all, it was agonizing abdominal and back pain that presaged my six days in the hospital and the ensuing four rounds of chemo to put my transformed lymphoma into remission. 

So as the January 30th scan day approached like a storm rolling in from the west, nighttime thoughts turned to what if: what if it was back? Would I still be able to do the transplant? Would it be delayed to squeeze in some more chemo? How much chemo? Would it be off the table completely?

Inside A Scan

A PET scan is considered nuclear medicine. It involves being infused with a small amount of a radioactive tracer that collects in areas of your body that have higher metabolic activity. Some of these areas are normally highly metabolic; some are abnormal. Cancer cells would  be one of those abnormal areas. That makes sense since cancer is essentially a disease of uncontrolled cellular growth. 

So you get your little tracer injection, you wait an hour or so for it to collect in your body and then you slide into a CT (computed tomography) scanner to capture some images and see what lights up.

The PET/CT scan on January 30th was a problem from the start. When I showed up for the scan, they were running at least an hour behind. Given that I had seven other appointments that day, that wasn't great. After a little rearranging, we were able to shift around the schedule and I went to a few other appointments first, and eventually made it back for my PET/CT scan.

Typically it takes about 1-2 minutes to infuse the tracer into your IV. Except when it doesn't. On this day, in the middle of the infusion, the machine goes beep and the technician looks at the screen with a puzzled look on her face. She presses a few buttons but her puzzled look remains, so she excuses herself and returns a few minutes later with another technician. And they explain to me that it only gave me about two-thirds of the tracer and then shut down. They don't know why. Safe to say, neither do I. But they debate a few options - try to give me the remaining one-third by the machine or give me the remaining one-third manually. Both seemed like logical options. But in the end, they decided to just double the scanning time and that would somehow compensate for the lighter tracer dose.

Later that afternoon, when I saw Dr. S for my last appointment of the day, he could see the images from scans, but the actual report wasn't in from the radiologist. To his eye, it looked good. And for a moment, I was relieved, but I wouldn't be happy until the actual results were in.

The next day I saw the results in my electronic record with something I'd never seen before: It read:

Due to infiltration of radiotracer at the site of injection, the image quality is limited and requires repeat imaging. Patient will be not be charged for this study.

Do Over

We scheduled a new scan for Thursday, February 9th. Nine more days of waiting. Nine more days of trying to keep my nighttime imagination subordinate to my daytime rational thought. The scan itself on the 9th was routine - on time and with fully functioning equipment. And the rest of the day was very busy, keeping my mind off the results. When Friday rolled around, I found myself checking frequently for notification of the image results in my online patient portal.   

There's a debate in cancer communications about whether or not imaging results should be released to patients before they had a chance to talk to their physician. While lab results are visible almost immediately (and always before I see my oncologist), I'm a little wary of trying to read an imaging report, let alone the actual scans. So when I saw around 1 pm that the PET/CT results were in, instead of opening them, I emailed one of my oncologists. It took her all of about 20 minutes to get back to me, with the following: 

"The scans look perfect!" 

Hearing that, I felt brave enough to look at the actual results. 

In my head and neck, no abnormal FDG uptake (FDG being the tracer); in my chest, no abnormal FDG uptake; in my abdomen, no abnormal uptake; in my spleen, no abnormal uptake; in my musculoskeletal, no abnormal uptake.  The overall impression:

1. Unchanged prominent retroperitoneal and mesenteric lymph nodes, now with uptake similar to/less than blood pool. Deauville 2.

2. No new FDG avid lymphoma.

Perfect! I didn't really appreciate how much the uncertainty of the scans were hanging over me until I got the results. 

So now we are all systems go for the transplant process to begin on March 10th. I'll post in the next week or so about what the actual process looks like. Until then, will leave with this image of my small  celebratory dinner from Friday night.

 

Still Moving Forward.

Just when you thought it was safe to circle a date on your calendar, my dates have changed. We are now planning to start on Friday, March 10. We'll start with the good news: the dates moved based on confirmation with the donor. So we have a donor. They are a full match. They have agreed to donate their stem cells; and they have dates on their calendar for donation. 

The last part is the key, of course. While the actual collection of the stem cells takes place over a day, there is work to do prior to that - a series of shots to stimulate stem cell production. So the fact that we have all that lined up is pretty good news and pretty inspiring, too. That's a word I've heard a few people use in recent weeks. People have commented to me with variations on the theme that I'm inspiring them, simply by how I'm "handling this" or how positive I remain. I do get that people are being kind and compassionate when they offer up these compliments. To be honest, it makes me scratch my head a bit as it feels like I'm doing nothing but waiting.

Sure, I continue to work, to see people (carefully), to be myself. But what's the alternative? Even if I weren't angry at the things that I am missing or will have to miss in 2023; even if there are many times when I look back with nostalgia at how simple life seemed pre-lymphoma;  times when I just wish that this wasn't part of who I am and who I have to be; most of the time, I can find the positives.

I fall back to the great response I had to R-CHOP; to the science that discovered the mutations that would have likely made an auto-SCT a futile effort; to the advances that has made this possible; and to the hope that a successful allo-SCT offers. 

That to me is inspiring. 

Moving Forward

Very quick update to say that we are tentatively planning now for a transplant starting on 2/17 (or 2/18), with the conditioning (aka, chemo) happening for five days and then donor stem cells transplanting on 2/24. Have to go back and do heart and lung tests as well as a PET/CT and bloodwork on 1/30. That's it. 

More info when I have it.  

The Wheels Are In Motion

Around 4 pm last Friday, heading into the New Year's Day weekend, I got a call from my nurse: we have a confirmed fully matched donor. 

That is exciting news, although not surprising, Given that we had identified 65 matches, it seemed like a given that one of them would be confirmed. Still, it's a bit amazing to think that a random stranger, with no vested interest in my health or life, is going to donate their stem cells to me. I'm grateful that so many people are registered donors that the search for a match was as productive as it was. And of course, I'm grateful to this stranger whose stem cells I will hopefully receive in the very near future.

Who is it? Where are they from? When will it all get started? Good questions to which I don't yet have answers. I expect to have them -- or some of them -- this week as the scheduling begins, and so does the reality of the transplant. 

I find my mind oscillating between fear and hope, between dark and light. There's the fear of the known - the risk of infection, relapse, and graft-versus-host disease; the social isolation and the myriad restrictions -- and fear of the unknown - how will I tolerate the chemotherapy conditioning, the actual transplant? What will my daily life be like for those first 100 or so days? What will it be like after it?  

The Shed, after hours of
 assembly, site preparation,
 and a short move across the
 lawn to its final location

It seems a bit trivial but one of the things I fear the most is the stillness, the lack of doing things. The advice I'm getting from many a well-wisher these days is to take time to rest and recover. And I appreciate that, but I do so much better when I'm mentally or physically active. 

This past week, the holidays brought with them some time off work. Not only did I get to celebrate with my family, but I also got to tackle a few projects  - including the building and siting  of a new shed in our backyard. It took many hours of assembly, of trips to Lowe's to prep and level the site where it sits. And  then today I spent a good chunk of time cleaning out the garage to take advantage of said new shed. Not exactly a day of fun, but accomplishing something, being productive fills me up. On top of it, I even got in a short pain-free run that was a lot closer to my normal pace. It was a very good day.  

The moon tonight,
shining through the clouds

In all the talk of the war on cancer, the battle between darkness versus light feels like an almost unforgotten fight. Darkness, with its fear and anxiety, can be a powerful force -- strong enough to obscure all the light. But the light has power too. It illuminates hope - hope of better days ahead, of a future without cancer. Hope of more days like today.