Category: Cancer Update (Page 2 of 7)

Last Monday, 4/10, I went in to my oncologist, Dr. Hu, to schedule the follow-up chemo we had agreed to a long time ago, before the surgeries. I had been keeping them updated through emails, mainly to ask for yet another refill of the Fentanyl patch because my reconstruction had been delayed, yet again.

I was expecting a very simple consultation where we set our start date and discussed the new agent we were going to be using. They had mentioned Doxil, or doxorubicin, in passing, in an email, so Mark had done some of his own research on it. It is a liposomal version of adriamycin, one of the dreadful chemos I had fared so poorly with before, but because in this form the molecules of chemo are encapsulated in fat, the delivery mechanism was changed. It minimizes the heart damage and nausea. I might not even lose my hair this time. But mouth sores and peripheral neuropathy are still a distinct possibility.
Okay. That doesn’t sound so bad.

But what my oncologist said when I finally saw him was not, “Okay, let’s get started.” It was “There’s a complication. We’re going to get another CT scan, and then decide how to proceed.?”
“What? Why? Has something changed?”
“Well, protocol usually dictates that we initiate the follow up chemo within 84 days of the tumor removal.”
And then my head started spinning and my stomach clenched. My tumor was removed at the beginning of December. It is now the beginning of April. The repeated delays in the manufacture of the prosthesis had pushed out my reconstruction incrementally, weeks at a time, to three full months after the tumor extraction. Then there was the requisite month of healing before chemo. Did I miss some kind of deadline I wasn’t even aware of? Was there no point in the follow up chemo because it was too late? Any micrometastases I might have had were beyond treating? AM I DYING NOW BECAUSE WE’RE PAST 84 DAYS?

Which reminded me of an observation I made to Mark the night before, that I thought anyone who ever had cancer had forever stuck in the back of their heads an addendum to any response made to the common question “How are you?” That no matter how far out of the process you are, the specter of recurrence is always with you. You respond normally,
“Oh fine.” But in your head you continue with,
“So far.”
“For now.”
“Until the next scan comes back positive.”

But we don’t say that part out loud because, while truthful, it’s a downer at parties. And really, any of us could get hit by a bus tomorrow.

But what I very calmly said to my oncologist was, “What’s so magical about the number 84? It sounds a bit arbitrary.”
He shrugged and said, “That’s just clinically how we do it.”
“So, we’ll get the scan and see if anything shows up? How long does it take for a metastasis to become detectable anyway?”
“They’re detectable at about a centimeter, and it takes the average tumor about six months to get that big from a micrometastasis.”
“Well it hasn’t been six months yet… Ah. Mine wasn’t an AVERAGE tumor. So it might show up this early. So. So… If nothing shows up on the CT scan, we assume that IF I have micrometastases, then they are still as susceptible, IF they were even susceptible in the first place, to chemo as they would have been within 84 days, and we proceed as planned.” (So many caveats.) “If something shows up on the scan, then what? How do we do things different?”
“Well. If that’s the case, then we have to come up with a new plan. Probably a new combination of surgery and chemo… Let’s leave that discussion for if it comes up (i.e. I should make sure my will is in order). We’ll schedule you for the CT scan and bloodwork this Wednesday. If that looks good we’ll start the chemo as planned next Monday. We’ll go ahead and make that appointment too.”
“So I won’t find out what we’re doing Monday until I get here.”
“No. No. Email us when you’re done with the scan and we’ll take a look at it and get back to you right away.”
A tense couple of days later, during which Mark and I very pointedly didn’t discuss the potential results, and Kristi, the member of the oncology team who had kindly been renewing my Fentanyl patches, emailed me the same night to tell me my scan was clear. THE SCAN WAS CLEAR. I AM NOT DYING (yet).
They were really busy on Monday, 4/17, when I went in for the chemo. I ended up at the cancer center 8 hours for a 3 hour transfusion. It gave me some time to chat with some of the people there.
The cheerful, well-dressed and coiffed, chatty grandma across the way knew all the nurses because her colon cancer, gone for 5 years, had come back and was now everywhere, including, coincidentally, a bone in her shoulder. We bonded over how yes, actually, that is quite painful. When she left she gave me a concerned look, meant to be reassuring maybe, and stuttered, “But I hope you don’t have any, I mean I wish you all the best.. You probably won’t have any.. Well. I hope everything goes well.” She was too self-consciously aware of providing the object proof to the fear we all walk around with. She wanted me to know that just because it happened to her, didn’t mean it would happen to me, and even if it did, she had managed her metastases on and off chemo and with surgeries for another six years after the recurrence. And still managed to be dapper.
I got the message.
Later one of the nurses brought me some literature on the drug, since I hadn’t had it before. I’m glad she did, because while I knew about the potential peripheral neuropathy, apparently it’s a little bit different with this drug. The liposomal delivery system gives it a propensity to collect in the hands and feet, and can cause open sores, especially if you expose your extremities to too much friction or heat, like cooking, or too-hot baths (nooooooo not the hot bath).
And just as we were discussing this, the disembodied voice of the man in the next chair over, on the other side of the privacy curtain, volunteered, “Oh yeah. That happened to me. About two months after the chemo, I lost so much skin on my hands that I couldn’t so much as lift a water glass for two weeks.”
So my infusion was yesterday. I didn’t sleep last night. I thought I would crash today, but don’t really feel tired yet. I don’t know if it’s a side effect of all the changing levels of too many chemicals in my body, or if it’s more psychological. I’m waiting to start vomiting my lungs out. Or for my hands to flat out rot off of my wrists.
But so far, the first day after my only infusion for the next three weeks, I feel completely … normal.
I keep waiting for the hammer to fall.
But maybe.
Maybe it will be fine.

I’m almost at four weeks post surgery. In another 2 weeks, I’ll be allowed to start my PT (physical therapy).

The first 6 weeks are all about the meat package woven around the prosthetic scapula healing down, solidifying in to position. After all, it’s the only thing holding the arm to my body. I’ve been concerned about the position the shoulder has been healing in. The sling and the overzealous pectorals had been pulling the whole thing forward, so that it was jutting forward at almost ninety degrees. The plastics guy gave me permission to sleep without the sling, which, thanks to gravity, gave me a nice flat shoulder by morning. But then, the sling would have it pulled forward again by the end of the day. Too many repetitions of this are also obviously bad for the shoulder solidifying in one position, so I’ve given up on the sling entirely for now, and lean back or lie down most of the time.

(OK. This was all true except the magnetic brace part.)

When I got out of surgery, on a Monday almost three weeks ago, I had four drains in. The bulbs were all safety-pinned together to the front of my sling so I didn’t sit on them or get them caught on anything, and the bloody-looking, rubbery cables draped between the bulbs and the holes in my body. Their uphill/downhill placement isn’t so important, thank god, because they work via vacuum. After unstoppering and emptying the drain, one squeezes the air out before stoppering it again, leaving a flattish disc, like a red blood cell. The negative pressure keeps the drainage going in the right direction, until the bulb fills up, and the sides pop back out, making it look more like a sated tick. Struggling up from the couch, I would sneak my right arm under my left for support, getting tangled up in red, rubbery bulbs and tubes. It’s like wearing your viscera on the outside.

Outside is a terrible place for viscera.

My first post-op visit was Thursday of the same week. One of the drains was low enough that they took it out right then. One down. Three to go.

The next week there was some interdepartmental jostling about who would get me for the post op visit, since I refused to get through one appointment, then turn around and wait in another office, and have to get in and out of the sling again (a complicated and exhausting prospect). I ended up going to plastics, and orthopedics sent over a member of their team to see how the healing was progressing. Both teams were delighted with the incision. I posed a concern to both teams that my arm was healing hunched forward, in a tendency very much reminiscent of the one that extruded the cadaveric scapula. While that ended up being a good thing for the reconstruction, I didn’t want it to now result in my being a hunchback. Not after all that work. Both teams assured me that it could be fixed later with PT, and that I shouldn’t do anything to stress or tear the muscles in the first six weeks. It was actually going to be *healing* for the next year, so don’t stress out about what it does in the first few weeks.
I also had some concerns about the drain coming from under the armpit. It was leaking a little bit at the insertion point, and there was no way to bandage it. Well it was a slow leak, and we were still getting a volume over 30 ml daily, so I was just going to have to put up with it for now. They would see me again in a week.
They took out one of the other drains instead. Two down, Two to go.
Like a slow, grisly striptease.
I spent the next few days trying to manage the leaking drain. It wasn’t much, volume-wise. Some gauze tucked in the armpit kept it from bloodying my clothes. But the moisture wicked down the tube, wetting my underarm in a way I could not prevent with any number of dry washclothes. By Monday, I had a diaper rash so bad on the under side of my arm and left side of my breast, that there were open sores. And the drain hurt. Carefully rotating the flesh of the arm up revealed that the tube had pushed itself out about an inch, the suture dragging irritated skin tightly behind it. The sutures were actually cutting their way through.
I contemplated the mess while Mark was logging that day’s drainage. It was only 15 ml, well below the 30 the doctor said he would take it out at. There was no pushing it back *in*. That was a guaranteed infection. At the least we needed to cut the sutures, but that still didn’t solve the problem of the rash.
So I said to Mark, “Get the scissors. This drain has to come out right now.”
And my beloved partner, who has patiently drained numerous drains, injected numerous injections, and bandaged numerous bands, said, “Ok.”
After snipping the sutures I gave him the option of pulling the drain or applying the direct pressure. “I ought to pull, don’t you think?” he said. We did it that way, but I’m pretty sure I could have done it. I was highly motivated. He pulled about eight inches of tubing.
Three down. One to go.
I called the office to let them know the next day. They had a lot of questions, but seemed satisfied finally to wait to see it until my already scheduled appointment later in the week. I could call them for antibiotics if there was any sign of infection in the meantime. There wasn’t. The rash started healing almost immediately.
Which brings us to today. My dear neighbor Renee drove me in, not for the first time, because Mark was working and Mom was home for Sarah (it takes a village, right?). They took out all the many, many staples, even fishing the suture remnants out of my armpit for me. AND pulled the last drain. That hole is the only part of me that is bandaged right now, and the surgeon says I can take that off in a couple days and take a bath this Saturday.
A BATH.
That was all pretty great, but I was still concerned with the conformation of the shoulder. It had pulled forward even more extremely, and, yes, I had plenty of time to fix it with PT, but considering how much damage those muscles had inflicted on the previous scapula ( and I’m not entirely sure the pressure from those same muscles didn’t cause the leak and extrusion of the underarm tubing) maybe we shouldn’t underestimate what was going on there.
I don’t want to accidentally extrude my new scapula.
So I got permission to sleep with the sling off, letting the arm rest at my side rather than being held forward, and he prescribed a muscle relaxant which I could take before bed.
I’ve never taken a muscle relaxant. ADVENTURE.
So that’s where we are. There’s a pronounced and glorious dearth of tubes, staples, and adhesives, and going forward is all about healing and straightening and getting stronger.
Oh.
Except for the next round of chemo, but that’s not… Aw. Dammit.
Well.
One thing at a time.
No more surgery! Yay!

The doctor’s office gets really excited when you tell them you were having so much trouble with one of the drains that you took it out yourself. Cross your fingers no infection.

Ooooow. It hurts to move, but it’s bearable because it stops hurting when I stop moving. Having control over the pain makes all the difference. This surgery was definitely different. So many people came to talk to me in pre-op, I felt like a minor celebrity. I guess that happens when you have two surgery teams. I hadn’t spent nearly as much time with the plastic surgeon, so it was nice to get some things clarified. For one, I asked why the orthopedist kept talking about using the pectoral, but the plastic surgeon didn’t. It turns out they don’t like to use that technique on women, because they have to cut straight through the entire breast to get to it. (What! Again, my imagination had betrayed me, since I thought they could just slip in behind the breast to get what they needed.) They would see what they had to work with during surgery, and decide then. Then, just to mess with me, they veered from this highly distressing revelation, to a side comment about how there had been a lot of success grafting free muscle tissues onto this kind of injury to restore motion, if I was interested in multiple successive surgeries. Having had my hopes thoroughly dashed in this regard already, I was really not prepared to process the possibility.
Also, I hate surgery.
So much.
(It turns out if you just start quietly crying to yourself because you really hate surgery, and here you are having surgery, again, your pre-op nurse mistakes it for pain, and quietly authorizes an extra dose of dilaudid, because she figures you’re in pain from your mangled shoulder.
I didn’t correct her.)
The surgery was over in a blink, or 4-6 hours if you’re not drugged.
I woke up to a couple pieces of good news. Remember how my two main sources of pain over the past three months were from muscle cramping and distended skin from the shifted space-holder? The cramping reduced the atrophy in the deltoid so much that, in addition to the latissimus, there was plenty of muscle for wound coverage – no need to go after the pectoral at all. AND, the shifted cadaveric scapula had distended the skin SO MUCH that there was plenty of that too. No skin graft of any kind required. That’s pretty good news for my anticipated recovery time.
I was feeling so much better than I thought I would, that I really pushed for getting home the next day, instead of staying in the hospital longer. That almost didn’t happen, though, because I fell. The first time I got up to use the bathroom, I was standing in front of the bathroom sink and my knees gave out. This terrified my nurse and the PT who had just come by to see if I wanted to try walking. Of course there was plenty of reason to be terrified, what with all the muscles that had been shifted around and sewn together elsewhere, and the not one, but four drains sprouting from my left side.
But get this, it was the perfect fall. I felt my knees give out and immediately dropped to my butt, then rolled back tightly, no arms splayed for balance. I put some pressure on my lower back, but shoulders and head didn’t hit anything. But by the time the nurse burst in, I had unrolled enough to be resting my head and shoulder against the bathroom wall, so when I told her, “Actually, I’m fine,” she heard “I have a concussion and I’m dying.”
I would like to take a moment in the story for this public service message. Everyone should take some aikido. It could save your life someday.
I had some trouble standing up after that, so I was very slow and careful about getting my legs under me just so. An OT came in later to take my blood pressure sitting, standing, and after leg exercises, through which we discovered my blood pressure was plummeting every time I stood. I promised to be very careful about it though, if they would just let me go home. The nurse still made me change my socks from cheerful purple to shame yellow, though – passively announcing to everyone that I had fallen and was not to be trusted.
But really I was fine. They grumbled about maybe getting an x-ray to make sure I hadn’t ripped something, but when it became obvious that my pain levels hadn’t changed at all, and I was, in fact, fine, they let it drop.
So they let me come home yesterday, back to my beloved couch where people let me sleep through the night and don’t keep taking superfluous blood samples.
I feel good. Yes, I’m in a lot of pain. Yes, I have to be supervised when upright. But there’s something so very reassuring about how tightly attached the shoulder is after months of instability, that it also feels good. And watching the drug schedule, tending the drains, taking the daily shots, struggling up and down from the couch… We’ve done it all before. It’s finite.
Phew.

Surgery is set for 3/6.
When I told my brother Joe that all the shoulder muscles were gone and there wouldn’t be any return of function, he had a lot of questions. Which ones were gone? What were they reattaching? I couldn’t answer. My conversation with Menendez had been startling, dismaying, and vague.
So I scheduled yet another pre-op appointment with him this week, when my orthopedic physician assistant brother was in town.
Joe and I went together yesterday.
We met with six people total. There was the guy who took my blood pressure, a succession of two surgery residents, in increasing order of seniority, the nurse practitioner Connie, who calls me with updates, then Menendez himself, and finally the guy responsible for ordering the replacement part.
I feel like Joe had a pretty great time. He loves his work and talked to everybody enthusiastically about their jobs and how things worked at their hospital.
When Menendez finally made his appearance, and I told him I was still unclear on what to expect from the surgery since our last meeting, Menendez didn’t wait to find out what clarifications I needed. He launched right in to the exact speech he had given last time. Joe and I each had to talk over him several times to get the additional information we had come for.
For one thing, Joe got the exact list of muscles that were taken out, and was able to see the xrays. Joe admits there’s more missing than he originally thought would be. However, we found out that the deltoid from the arm IS going to be attached, if not to the scapula itself, then at least to the ‘meat package’ around it.
I was also concerned about the notion that he was going to take the pectoral. Since the plastic surgeon hadn’t mentioned it last time, I hadn’t had a chance to really ask about it. The thing is, it’s hooked up right now. It helps me hold my arm to my body. Am I going to lose that function? Probably not, it turns out. IF they end up taking the pectoral, they probably won’t take the whole thing.
So, between the deltoid and the pectoral, while I won’t have much range of motion, I’ll at least have the ability to hold my arm in position and not have it flop around like a dead thing. I had been trying to imagine what kind of pillow-and-strap contraption I would have to arrange in order to keep my arm in position to, say, type, but it looks like I’ll have a lot more stability than I thought.
I also asked for clarification regarding the prosthesis. If we weren’t going to see a significant return of function, or really any much at all, why did we wait MONTHS for this super sparkly 3D scanned highly tailored prosthesis? Menendez informed us that the part I needed didn’t exist otherwise. There was no such thing as getting it off the shelf. This or nothing.
And then, because I was curious, he called in the guy whose job it was to order it. He informed us it was ~$21,000 for the humeral head, and another ~$28,000 for the scapula itself. Uninstalled.
Woof.
I made them promise to get a good photo of it before it was installed, because I was going to print and frame it as the most expensive piece of art I own.
So, I’m glad we went. I feel a lot more sure of what to expect, and while it’s still not great, it’s better than I thought. But even Joe commented on our way out, “Man, you really have to pin that guy down.”
You do. We did.