Here We Go

We'll do this one mostly by pictures. Port was placed today (I have a picture of that, too, but will spare you). It was a very easy procedure and all went well. Most of the day was just waiting around but by about 4:30 or so, I was in the room. It's not quite as big as the photo makes it out to be, but it's private, quiet, with a mini-fridge and a TV, a couch-ish area and a comfy chair besides the bed, and of course, a private bathroom. 

While I still have an appetite, and in the midst of lots of tests (taking some blood, COVID test, Mersa test, EK), was able to get a dinner order in.

And finally, after dinner, my belongings made it up to the room, including my cozy new blanket, lovingly handmade by my sister.

Chemo starts tomorrow so the road will get a bit harder. But we've found a place for my Believe light :)

The Transplant Schedule

 This is a little weird. Since 1989, I haven't taken more than two weeks off work. And yet, here I am with an open-ended leave that will last a couple months at least. I have two emails in my inbox. I have no meetings on my calendar. It feels like I'm leaving my job, or getting ready for a big vacation. After all, I have my suitcase packed for my 3+ week stay at the hospital. 

My bags are packed (almost),
and I'm ready to go (sort of)

But of course, this isn't a vacation. 

The Stem Cell Transplant calendar all centers around your transplant day. That's day zero. But the process starts before that. Tomorrow, I get my port placed and admitted to the Brigham. Then Saturday through Tuesday (days -5 through -2), it's chemotherapy or conditioning to eliminate any potentially lurking lymphoma cells that might not show up on PET/CT scans but could be hiding out, waiting to divide and conquer. 

Day -1 (Wednesday, the 15th) is a rest day. It's  also the drop date for season three of Ted Lasso, so there's that.  Then on the 16th, it's the new stem cell party. It's not an overly long process, and from what I understand, it's akin to getting an infusion of any blood product. Days +3 and +4 bring an infusion of cytoxan, an immunosuppressive treatment. After that, it's recovery as my immune system starts to build itself anew.  And if all goes to plan, about 13-16 days after transplant day, my immune system will be strong enough that I can be discharged and begin the home recovery period.

So definitely not a vacation, but maybe the prelude to a long-term vacation from lymphoma. And that's something I can believe in.

Caregiving and the Heaviness of It All

 Stacy was discharged from the hospital Monday night.

That's how I had intended to start this post. I'll get to that story shortly, but there's a lot rattling around my brain this week. I'm now five days from being admitted; five days from voluntarily turning my life upside down; five days from making myself feel like shit so I can hopefully feel better for a long time; five days from stepping away from my friends and colleagues who occupy so much of my time and account for so much of my identity; five days from making life so much harder for my family.  

That's been weighing on me a lot these past few days, with a physical heaviness that I could feel pushing down on my shoulders and back, and so loudly that it was sometimes hard to hear a casual conversation. 

Part of the weight is the uncertainty - I just don't know how I'll feel or how quickly I'll recover. Will I be able to work part time after two months? I don't know. When will I be able to walk my dog again? When will I be able to see people again? When will I feel "normal" again -- and not a new normal, just plain old normal? When will I be able to run again? I don't know any of that.

But part of the weight is the heaviness of the burden that this will put on my family. I got a brief glimpse of the caregiver role this past week when Stacy spent three days in Miriam Hospital  After experiencing intense abdominal and back pain that had us flashing back to the summer and my symptoms, and understandably freaking out a bit, a trip to the  ER led to a diagnosis of a whole lotta gallstones and an emergency gall bladder surgery for Stacy, and a taste of caregiving role for me. She was discharged last Monday night and is recovering well. But in the short time in the hospital and the ensuing week at home, I caught sight of the emotional burden of caregiving. And it's not light.

But here we are. We start down the path in five days. Some uncertainties will go away; others will emerge. And in the process, we will begin what we hope is the road to long-term recovery.

 

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.