Settle in, friends, for one of my Stacey-style medical epics
You might want to grab a cup of coffee or refresh your water bottle.
As you know, on August 9, I had unplanned major, complex spinal surgery to:
remove the T5 vertebra in order to decompress the spinal cord, which had moderate-to-severe spinal cord compression from a tumor in the epidural space;
to debulk (take out) as much of the tumor as possible;
and then to fuse vertebrae T3 through T8 to stabilize my spine after the T5 removal.
The 7-hour surgery was a success. The next day, I was up and walking the halls, and the day after that, I had passed my PT assessment.
The remaining issue that kept me in the hospital for 5 days post-op was the J drain in my back, which was removing blood and other fluids from the surgical site. That finally came out on Sunday morning, August 14, and was such a blessed relief. A lot of the back pain I’d had was actually around the drain site. (There was plenty of back pain to go around though, as having a spinal fusion feels to me like someone has nailed a coat rack to my skeleton.)
One of the reasons I’ve been incommunicado on this here platform (substack) is that it turns out it doesn’t really work well for me to work on substack on my iPad (which is what I’d planned) or iPhone (backup option). Only my laptop will do, and my laptop (MacBook Pro) is rather heavy (like 3 pounds) and it turns out that post-spinal surgery there are a whoooolllllleeeee lot of things you aren’t supposed to do.
You can technically hold something that’s 3 pounds. But you can’t bend over to pick it up - even if by bend over you mean bend at the waist at a 20-degree angle. And you can’t do any twisting motion to try to grab it from somewhere nearby. And basically, any time I needed my laptop for the first several days post-surgery, I had to inconvenience someone else to get it for me and to me. It was an annoyance to me, and I ended up mostly using my iPhone for things I needed, and it was easiest to update on Facebook when I was using just my iPhone.
There are a lot of other inconvenient things about life post-spinal surgery for those first two weeks, but I will not bore you with a rundown of them. I will say that it is very, very hard to try to help get a child ready to leave for college:
when you can’t lift, bend, twist, or carry;
when you are sometimes vomiting (sorry!);
when your right leg needs to be propped as much as possible because of swelling;
and when you feel like someone has nailed a coatrack to your skeleton.
College Trip
As my neurosurgeon had promised, two days after my J drain was removed, I was able to restart my blood thinners. My neurosurgeon and oncologist both signed off on my plans to travel to South Carolina with my family to get our son Rob installed at Furman for his freshman year.
We were extremely slow and delayed getting out the door on August 17, due in some part to my physical slowness and challenges. We got on the road late afternoon and with only two available drivers - our son Charlie doesn’t yet have his license, and I was not yet allowed to drive post-surgery. We arrived in Greenville at 3:30 in the morning, really worn out. Another family arrived to the hotel at the same time we did, from Columbus, Ohio (where U-M’s rival OSU resides). They seemed as worn out as we felt.
We were to be on campus at 10:00am for Rob’s move-in slot. We overslept. I still don’t know what happened to all the alarms I had set, or how I missed a phone call at 9:30, but the first thing I knew that morning was at 10:08, Paul jumped up and said, “We’ve messed up!” Fortunately, I had worked with deliverbees college, an amazing business in Greenville that allows families to ship all of their dorm room items there for storage and then they’ll deliver them onsite the day of move-in. Between deliverbees and the incredible Furman move-in volunteers, all of Rob’s dorm stuff was already right outside his room when we came rolling up to the school two hours late.
It was a long hard day on my body, despite the fact that I didn’t do any lifting, bending, twisting, or carrying. And then that night, just as we were settling in for sleep at our hotel room, we got a call from Rob that he’d tested positive for COVID and had to leave campus. Turns out that students and their families are responsible for getting their students off campus and into some kind of isolation housing for five days. It was an extremely challenging experience, especially in my medically fragile state. We somehow managed, with fantastic support from my cousin and her family, to get things all sorted out. But we had to say goodbye to our son under less-than-ideal circumstances. I never did get to finish helping set up his dorm room. We got on the road and made our return a 2-day trip, which was much more civilized, especially with only one driver now.
COVID
Somehow, Rob ended up being the only one of the four of us to come down with COVID. We think he got it on his last night working as a server at a local pub, which had a big event two nights before he left for college. We spent 12 hours in the car with him on the drive to South Carolina and another several hours sharing a hotel room with him, so we assumed we would all get sick. But as soon as we knew he had Covid, he and we masked up around each other for the very limited amount of time Paul and I brought provisions to his hotel room and helped him get set up. Charlie only saw him in the parking lot outside, where we all masked to say our goodbyes.
After returning home, the three of us quarantined as much as possible and masked up in public (which had been our norm anyway) to keep from spreading COVID in case we’d gotten it from Rob. But somehow none of us got it. I’m really grateful, because as a high-risk person, I’ve needed to avoid it as much as possible anyway. But post-surgery, I especially have felt the need to avoid getting it. Glad to have dodged it this particular time.
Staples out, etc.
Last Wednesday, I got my 43 staples out. In a previous post I mentioned that my incision was 12”, but it’s really more like 15”, maybe a bit more. Because I had so little time to prepare for this surgery, I never really thought about what my body might look like or feel like post-surgery. It didn’t really occur to me to think about how long the incision might be, how many staples I might have, what the scar would like like. The scar is going to be quite something, I think.
The nurse who took out the 43 staples used something that looked to me kind of like needle-nose pliers to clip and bend them out. She showed me. I was impressed. You might be impressed if I showed you pictures of my back (both with and without the staples), but I don’t want to gross anyone out or cause anyone to faint. Trust that it is really an amazing piece of work back there.
At that appointment, I got cleared to drive again (as long as I haven’t taken any painkillers - and at this point, I’m down to a single 5mg pill at bedtime), and just as importantly to me, I got cleared to bend over and pick stuff up, including things I’ve dropped on the floor (life-changer after 2 weeks of not being allowed to do that!), as long as it’s no heavier than a gallon of milk, and as long as I’m not repetitively bending, like with gardening or vacuum cleaning or whatever. No chance of that, y’all! Now I can also pick up my laptop and carry it anywhere I want or need to go.
Next Steps
The big next step for me post-surgery is to have radiation to whatever remains of the tumor at my T5. I have my radiation oncology consult on Wednesday, with the co-head of the spine oncology clinic at University of Michigan (the other head of it is my neurosurgeon). Then I’ll be set up for simulation scans and then three radiation treatments to the T5 and potentially elsewhere.
Potentially elsewhere? Ah, yes! There’s a spot at my L1 that has grown some since my scans in June, and I want to make sure I’m not going to have any additional cord compression there, so I’ll be asking about the L1 on Wednesday.
There’s also the issue of my left shoulder, where we’ve known for awhile I had a small met. In late May, I began having pain in this area, and since mid-June, I’ve been asking for imaging of that area. My big concern was the possibility of a pathologic fracture, since we knew I had a met there. I was assured that there was little risk of a fracture and that the bone where the met was located was not a load-bearing bone anyway, so even if it were to fracture, it shouldn’t be a big problem.
To me, any skeletal-related event is a problem that can have life-altering outcomes. But I couldn’t very well order imaging for myself, so I just waited for my clinical trial to start on July 6 and hoped it would impact what was happening at the shoulder.
And then on the early morning of July 23, on our drive to our annual family beach trip, I had a severe pain event happen in the car. My shoulder felt like it had ripped - I thought at the time perhaps it was a soft tissue injury rather than a fracture. It was extremely intense pain that ultimately let up if I held my arm close to my body (as if in a sling). Anytime we hit a bump of any kind, however, the shoulder shrieked its pain throughout my body. It was awful.
Imaging I had on August 12 showed exactly what I’d been concerned about since mid-June: a new nondisplaced pathologic fracture of the coracoid process of the scapula, associated with a lesion. A pathologic fracture is one that happens because of a disease process (like a cancer tumor) as opposed to trauma. A cancer patient whose cancer is in their bones can have a bone break while doing absolutely nothing. That’s what had happened. This is now the third time this has happened for me - the first was when the T5 originally fractured in September 2018; the second was when my pelvic bone fractured in September 2021 (I was told it hadn’t fractured, but then imaging in December and ever since then shows it did have a pathologic fracture); and now the shoulder.
Let me assure you that, though the coracoid process may not be load-bearing, if it fractures in the car on the way to the beach, you will discover that:
you are unable to do any of the driving (ah! just like on the way to Furman);
you are unable to do any of the unloading of the vehicle;
you may be useless when it comes to the meal prep you ordinarily do;
you will be useless for getting any gear down to the beach and back
you may not even be able to hold the 5-month old family member you’d been looking forward to holding.
There was absolutely no reason for me to end up in this situation, and yes, I’m angry about it.
The pain I’m having in my left shoulder now is a completely unnecessary counterpoint to the discomfort of having what feels like a coatrack nailed to my skeleton. If I’d had additional imaging in June, we could’ve seen the reality of the situation potentially in time to get radiation to prevent a fracture. The concern at the time was to not do anything that might result in delaying my starting the clinical trial. I agreed with this concern, but I wish I could’ve/would’ve at least had the imaging I wanted so we could’ve made a more informed decision about addressing the possibility of an impending fracture.
Other issues
The big other issue is the edema in my right leg. As I mentioned in my day 2 post-op post, I developed swelling in my right leg on our trip down to the beach - the same day, as it turns out, that my left shoulder fractured. I was on blood thinners at the time, so it was a bit surprising - I’d never had this issue before.
The right leg is the same one I’ve been in physical therapy for over the last many months. My femoral nerve was injured last September when a hip flexor tumor pressed on it (and when a pelvic bone fractured). I’ve had occasional swelling around the knee due to improper mechanics. My physical therapist believed I was hyperextending my knee when walking and this was causing the swelling there. On July 23, as we traveled, I figured I was having additional swelling just due to being on that leg too much. However, the swelling never resolved, no matter how much I rested and elevated the leg.
Getting back on blood thinners on August 16 did seem to help some with the edema, but not enough. And here is the horrible reason why.
My primary tumor, in my right thigh/groin (the inguinal region), has grown since June and is now compressing my femoral vein. According to a DVT ultrasound I had in the hospital, that compression is essentially a total occlusion. This is really not good, y’all.
Over the years, my primary tumor has sometimes grown and sometimes shrunk and sometimes just quietly remained stable. Last year (April 2021), I had radiation to it - the first treatment ever to specifically target the primary tumor (as opposed to just hoping systemic treatment - chemo or targeted therapy - would cause it to shrink). My understanding is that this tumor cannot be re-irradiated again so soon. And I don’t want to wait to get back on systemic treatment (whenever that might be!) to hope that this tumor will shrink and my circulation will finally be okay and my right leg will finally quit ballooning up. It makes me unsteady on my feet and it’s just dang uncomfortable, y’all.
I’ve got to push for what I really want, which is a surgical consult. I had a surgical consult for this tumor back in September 2018. At that time, I was told by both a general surgeon and a vascular surgeon (who would have to be involved) that they could surgically remove this tumor. However, the general surgeon was hesitant to do the surgery since I had disease elsewhere. Because I had no issues from this tumor - like limping or edema - she didn’t want to do a surgery that could potentially give me those issues. She left it up to me to decide, but before I could make a choice, my T5 fractured and we had to turn to seeing about that.
Well, now I have those issues in my leg that she didn’t want to give me - limping, edema. And no amount of blood thinner in the world will cause the tumor to quit compressing my femoral vein.
And because all of this isn’t enough
In the hospital, my hair started falling out. I don’t know why. It could be a response to the trial drug I was on, though I quit taking it on August 3. Maybe it was a response to the steroids I was on, though I’ve been off those now for 2 weeks and I continue to lose bits of hair. Maybe it was just the stress of surgery and hospitalization? I don’t know. My hair feels different, like something happened to it. I don’t seem to be losing all of it, but the top has gotten quite a bit thinner than it was before I went in the hospital. It’s not a massive loss, but it’s ongoing and it’s noticeable, at least to Paul and me.
My hair has never gone back to what it was before my first chemo.
This picture was taken on February 27, 2018, and it was the last time I had what I consider to be my true hair. Two days later, I was in the ER with hemorrhaging liver tumors requiring an emergency embolization, and by the end of my hospitalization, my hair was matted and coming out in chunks. This was presumably from the fact that my cold caps, which I’d done for my first doxorubicin treatment, couldn’t fully reach my scalp due to the thickness of my hair.
I lost my hair, though rather slowly - it was May before I was completely bald. I started wearing wigs in March 2018 and wore them until August 2019, when we got home from Europe. My hair has never been the same, and it’s never come fully back. I think I have about 25% of what I had before that first chemo. It has come back with some curl but not the amount of curl I had before. It came back red, but most people other than me don’t see it that way. Turns out the red depended on volume and curl to reflect light in a particular way. The fact that it didn’t come back grey or white is a surprise, given that I’m 51. My redheaded mom didn’t go grey until her 60s, but I sort of expected all the chemo I’ve done to cause my hair color to go grey.
I’ve been glad for any amount of hair I’ve had in any color, though I had sort of thought it I wasn’t doing chemo that caused hair loss (which I haven’t since ending doxorubicin in August 2018) that my hair would come back and keep growing. I would’ve expected that after 4 years of treatment that didn’t involve hair loss that I could’ve grown a lot of pretty good-looking hair. It hasn’t really worked out that way.
I’ve accepted it, bu that doesn’t mean I don’t grieve it. My hair was my trademark, and for so long it was a trademark that Rob and I shared. It was as hard for him as it was for me when I lost my hair and we no longer had this in common.
In that last picture, you can see what my hair has mostly looked like lately. It seems to be rapidly looking less like that post-surgery. I don’t know what to expect as to how much more I might lose. But I also don’t know what systemic treatment I’ll end up on next, and whether it will involve hair loss.
I try to hold all this lightly.
It’s hard to hold all this lightly, even when faced with morbidity and mortality, because I want to look like myself. I want to feel like myself.
Hair is an extremely personal journey for anyone living with cancer, and we don’t all have the same experience as each other. But if there is one thing I could impress upon people who are not living with cancer, it is this: please don’t ever tell someone with cancer that it’s just hair. If you haven’t lived this reality, you have no idea. You have no idea what you’re saying to them when you say that, or what pain you are dismissing it. Is it just hair? Sure. Is it more than that? Yes.
In sum
Wow, this went on quite long, even for me. There was a lot to catch up on after 17 days of silence. I hope it hasn’t been too much.
I was back at church leading worship yesterday for the first time since before we left the beach and came back from the beach and learned I’d have to have complex spinal surgery right away. It felt so good to be back with my people. I was surprised to discover I was in full voice, even for singing - something I’d been concerned about post-surgery since my back feels all misshapen and I know that can affect how lung capacity.
I’d appreciate any and all prayers, as usual. Especially for the radiation next steps but also for what’s going on with the primary tumor. It feels a bit like I’m playing chess now, or perhaps the glass stepping stone game (non-blood link) from Squid Game, as I try to maneuver successfully through each next step while preserving the possibility that the steps after those will also be good ones. I believe BIG and I believe BOLD and I appreciate any audaciousness on my behalf as I keep taking these leaps.
Oh my, Stacey, that is so much to deal with. Praying for you. And thank you for sharing about your hair--this is something I think so few people really understand (and your hair IS you!). Continued prayers.
Being able to share this journey with you through your writing is so meaningful. I wish you weren’t on this road. At all. But you are. And because of your graciousness in sharing - we’re able to be on the road with you. You have my prayers. My hope. My rage. My support. My love.