[cancer] Field notes from Cancerland, post-operative recovery edition

The surgery

As previously indicated, the surgery went very well. There were no complications in the OR, and two tumor masses about 1.3 mm each were sent off to the TIL lab for extraction, and eventually, a great deal of expansion growth. With respect to thoracic surgery team, they were able to successfully complete my surgery with the VATS procedure. This has made my post-operative recovery much less brutal than previous procedures. Even the GI restart has gone better, presumably because of the lower levels of anesthetic required for the procedure. I am very happy with that outcome.

The TIL cell growth

Though it’s early days yet, we have received strong positive reports from the TIL cell lab. The target cells are present in the hoped-for quantities within my extracted tumor tissue, and process of enticing them out for further growth is going quite well so far. This doesn’t have any particular predictive clinical significance, but is something nice to note.

Whole Genome Sequencing (WGS) and TIL cell selection

Dr.s Klebanoff and Klemen, who are managing my participation in the study, inform me that they are making good use of of the WGS data. Having a map of my mutations is allowing them to filter the TIL cells by affinity, producing a truly personalized immunotherapy poocess here. Again, my thanks to everyone who supported that fundraiser last year. It continues to pay dividends.

Post-operative complications and getting out of the hospital

We had a couple of minor-but-annoying post-operative complications. For a while I was running a fever which climbed into the danger zone, but climbed back down again. We also had issues with lung drainage and my O2 saturation. The O2 sat dropped below 80, which caused much excitement in certain quarters. I seem to have since recovered. Based on eventual post-operative healing, I should have 95-97% of my original lung capacity. Subtract from this whatever effect the dozen or so tumors in my lungs are having and I should still be oky.

All of which is to say, I’m probably fit to be discharged today, but they’ll want to recheck my lung function, recheck my infection status, and go over the state of my surgical wounds and any requirements for wound care.

Having the chest drain pulled out

This is the second time I’ve had a chest drain pulled out, and I remain convinced that is is my least favorite somatic experience, ever. The doctor was patient and let me take a dose of Lorazepam to chill out before he came in and did the deed. My dad watched, and tried for some photos without getting in the way.

photo 1

Telling healthcare professionals things they don’t want to hear

I’m a “hard stick”. To a phlebotomist or to an IV or chemo nurse, that means someone with difficult to reach veins that don’t cooperate well. Unfortunately, a great many patients with perfectly normal veins consider themselves “hard sticks”, because of bad past experiences, a dislike of needles, a desire to be treated more carefully than average, or some other reason. So when you tell someone you’re a “hard stick”, they tend to smile and nod and go about their business, because they’ve heard it all before.

Some years ago, an exasperated phlebotomist ignored my declaration that I was a “hard stick”, then poked about five dry holes in me before telling me with some surprise that I was indeed a “hard stick”. This was not news to me, I pointed out. They coached me how to explain to a phlebotomist in very specific terms that I was in fact a “hard stick”, truly a patient with difficult veins, and by-pass the natural cynicism that declaration engenders. It’s been useful.

I’ve since found another medical issues where so many people call it out to clinicians that clinicians essentially ignore that as background noise until the evidence presents itself. One is that I experience profound constipation from even relatively minimal dosages of opiates. Everybody gets constipated from opiates, so this statement from me tends to be ignored with a patronizing smile. No, really, I say, my personal best is nine days post-operative with no bowel movements, followed by a bounceback admission to the hospital to be treated for pathological constipation. That sometimes, but not always, gets their attention.

This time at NIH, I hammered on this point so frequently and so hard that I eventually got a low-opiate anesthesia and pain management plan for both surgery and post-operative recovery. When they finally took me off the epidural yesterday, the nurse told me she had my hydromorphone ready. I refused her, which startled her so much I wondered how many other patients had ever refused hydromorphone. Instead, we managed pain control with Toradol, gabapentin and Tylenol.

Meanwhile, we were pouring quite a few laxatives down me, and I was eating meals that typically cause me to have heavy, loose bowel movements. Yesterday afternoon, that dam broke with a vengeance, producing a truly astonishing amount of stool. There have been sufficient encores for us to conclude this is the real thing and my GI is back on line.

Next steps at NIH

I’ll probably be discharged from the inpatient facility today. I would expect a follow or two over the next couple of days. Our next formal involvement is coming back in a week ahead of the completed growth of my personalized TIL cells. The WGS-driven selection process may add some time, as in effect, they’ll be designed a new section of the protocol for that. I’m the first patient who’s ever com through the door with that much data.

We have asked for a tour of the TIL cell lab this week, so I can write about it here. That seems to be in train, but with no dates yet.

The earliest I’ll be back here for the next phases of treatment is a little less than two weeks. It could be three or more.

The fundraiser carries on even in the face of success

The Science Fiction Author on Trial (NIH trial, that is!) fundraiser made goal. Thank you! The expenses are what they are, now and later in the year. To respond to the interest from you guys, we are working on some stretch goals. Keep an eye out.

15 thoughts on “[cancer] Field notes from Cancerland, post-operative recovery edition

  1. uriel1998 says:

    Wow. That’s totally different than my approach – if someone knows enough to say they’re a hard stick (or to ask for IV Therapy, or knows which veins are their best) I almost always do exactly what they say.

    That said, I’m glad it all went well.

  2. JD says:

    Another one that turns off our attention almost immediately: allergy lists as long as my…. arm (and we just love it when people are “allergic” to all opiates except hydromorphone). My personal favorite was a woman telling me she was allergic to saline.

    Hope the recovery goes well, and quickly.

    1. Jay says:

      I get confused by the term “allergic”. Morphine gives me a histamine reaction (hives), which is an allergy. Oxycontin works beautifully, but it makes me higher than God tripping balls, and I try to dance with my PICC lines in and so forth, which is an idiosyncratic drug reaction, not at all an allergy in the histamine sense. Ibuprofen administered orally gives me acid reflux, which is not a histamine reaction either insofar as I know. And anything in the opiate family gives me pathological constipation, which is not an allergy at all but rather an expected side effect taken to an extreme. In other words, just me being the lucky son of a bitch who sits at the far end of that particular bell curve.

      1. JD says:

        The spectrum of expected side effect adverse reaction allergy can be murky (demonstrates well why we joke medicine is an “art” rather than a “science”).

        Opiate constipation can be terrible, you have my sympathies. As a radiologist, we frequently see the serial abdominal radiographs to follow post-op constipation, and it can be extreme. 9 days is something else…

    2. Stacia says:

      In my experience (medical transcriptionist, not a trained medical provider, as well as my own personal experience) patients are sometimes told that allergies and adverse reactions are the same thing. This happened to me just last Thursday, when the intake nurse classified my adverse reaction to morphine (loss of consciousness) as an allergy on the chart. Between lack of knowledge and conflicting info, it’s no wonder the layperson gets confused.

      1. JD says:

        Very good point. A lot of the confusion comes down to us, the providers.

  3. Lisa Deutsch Harrigan says:

    Big Harold had Rheumatic Fever as a child, all his veins are armor plated. He refuses all out patient blood tests. He starts demanding a PICC line as soon as we enter the hospital. At worst it now takes them a day as the one bad line they sort of got to work starts failing… The PICC line nurse knows us real well though. I’m not so sure that’s a good thing.
    And I’m completely unresponsive to Tylenol. It doesn’t lower a fever, doesn’t do anything for pain. Luckily, just make sure I have a laxative and opiates and I do fine. I can even stop them as soon as needed with no withdrawal. But they work beautifully for my pain.
    Yep, every body is different.
    Hope you continue to recover well, and that they can extend your life a while longer.

  4. pelican says:

    So glad to hear that your procedures went as well as can be expected- gotta say, that’s some might cool science that’s happening in and around your body!

  5. Laurie Mann says:

    It sometimes helps to really hammer things in. I wasn’t as proactive as I could have been before a 2007 surgery. When I had a similar surgery in 2012, I was able to say I MUST have free access to nasal saline solution to prevent dry hospital migraines and I MUST have access to anti-migraine drugs immediately should one develop. Since I was able to use the saline spray whenever I felt I needed it, I didn’t have a migraine this time. I failed to talk them out of making me wear the pneumatic boots the first night post-op, which meant I had no sleep at all (after 2 nights with very little).

    1. Laurie Mann says:

      Should add, as another thing we have in common, I am a hard stick. I stopped being a blood donor because it often took two sticke to get to a vein. And it’s worse when you go into a hospital for surgery since you don’t eat or drink for a while you’re a little dehydrated which makes hard veins even harder to find.

      1. Linda D. says:

        I’m lucky. I have two large veins (one at each elbow bend) that are easy to find, and the needles can be almost painless, depending on who’s taking the blood.

  6. Jeff P says:

    Holy shit!!!! (Sorry.)

    I’m glad things went as well as they did for you. Onward!

  7. Barbara says:

    thanks for the update, and mini-review of having to be your own doctor, hey, you’ve been through a lot with your body, and you’ve been taking notes! I look forward to hearing about the TIL lab..

  8. Stacia says:

    Despite the complications, it sounds like good news, and a fascinating write-up, too.

    As a fellow “hard stick,” I feel your pain. After my ER visit three years ago, I remained completely out of it for two days. When I finally woke up enough to understand what was going on, I discovered four huge bandages wrapped around my arms, two on the inner elbow, two on the wrist, from several unsuccessful attempts to draw blood while I had been unconscious. My husband was beyond frustrated as this was going on, as you can imagine.

    Hope you get your tour of the TIL cell lab as soon as you’re up to it!

  9. Erica says:

    I’ve been told I have “good veins” (by a phlebotomist with a Transylvanian accent, no less), and I’ve had some uncomfortable iv experiences. So I can only imagine what it’s like for a hard stick. Adverse opiod reactions run in my family too, and it is frustrating to have health care providers brush off your concerns and warnings. Glad things came out all right in the end (omg, can’t believe I wrote that). Seriously, hope you feel better and this procedure yields the best possible results with the least possible discomfort. You definitely deserve some breaks.

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