The Twisted Adaptability Of The Human Life Form

Cycle 13 Day 24. Wednesday, June 3rd. 5:22 in the morning.The twisted adaptability of the human life form.I realized, laying here in my new all-time low in life, how completely twisted our human life form is. How completely devoid of context it can be in its search to adapt to new oncoming environments, contexts, and challenges.Let me just prop up the phone so I don’t have to hold it. Maybe that’s better.Okay.So I’ll give you guys the rundown. This will be quite a long rundown indeed, on my all-time low.The DescentPicture yourself being Victor, having gone through your third retreatment with aggressive systemic therapy, but still in a context where you feel like you’re in control.You have the clear downward spiral of the four-day systemic treatment, surrounded by a six-day concomitant water fast, going into the slow but often somewhat steady recovery, which normally requires an additional week to get your bearings straight and to be able to refeed, to gradually strengthen yourself, and to get back into an active life.Even getting back into strength training and other reparative and restorative protocols, such as good diet, sauna, social life, creativity, et cetera.A lot of hassle has gone down the road during all of these treatment cycles.But what happened specifically, how this actually kicked off, was me, on a Friday, expecting to start treatment on a Monday for the 12th cycle, suddenly being informed that my oncologist had delayed treatment without informing me prior to postponing the treatment.Of course, that put everything in limbo.I was there on a Friday. I wasn’t able to revert that decision because the oncologist didn’t give me any head notice, and once I was informed, it was too late in the day to make any changes.But the initial thing that triggered that delay in his mind was that one blood marker especially, LD (lactate dehydrogenase), had doubled. It was still basically within the reference interval, but it had doubled from one reading to the next.So he was concerned that I had had some kind of reaction to prior treatment that we should monitor, to see that this value didn’t escalate, but rather came down.Then we monitored it for a few days and it remained stable.A week later, I went through the third retreatment, my 12th cycle.Then I was able to recover from that.There were some further delays for me to get the scan follow-up because of scheduling mishaps and mistakes that are directly blameable to my contact nurse, basically.Anyway, once we got the scan back and had a meeting with the oncologist, things looked a bit bleaker.It was my first scan whilst having ongoing treatment where not all of the signals we picked up prior showed clear signs of regression.In addition, there were new signals. And those new signals were no longer just inside the lymphatic system. They were namely seen in the liver.There was some increased activity picked up in the hilum, or potentially adjacent to the hilum in a lymph node pushing on the hilum.Then the radiologists commented that they saw vague increased uptake throughout the liver, basically. That might be an anomaly, in terms of it just being an artifact. But they also saw some diffuse areas, at maybe three or four points in the liver, that could be explained by diffuse tumor activity or by some inflammatory state.Anyway, this didn’t point in the right direction in terms of my treatment working efficiently enough, which was a bummer.I was basically standing with the choice of whether to proceed with the current treatment or to change it.And it seemed straightforward to change it.I had two options, basically.One was to switch to another chemo that was similar to the one I was doing. The same kind of cocktail, but instead of FOLFOX it would be FOLFIRI.A bit of an increase in risk to damaging the gut, but I was reasoning that this risk of damage should be offset by me fasting.But then we had the other option, which was potentially more potent and, importantly, a new mechanism as opposed to the other mechanisms of action of the treatment.This one is quite different from the other ones.Namely Enhertu, which is an antibody. But it’s an antibody specifically binding to the HER2 receptors that are overexpressed in my tumor, as evidenced by numerous tissue samples.These antibodies also have bound to them a chemo drugs.So once they are bound to a tumor cell, preferably, and that tumor cell engulfs the antibody, it will also engulf these chemo drugs. And if effective, they will have the cell collapse in on itself.Once that cell is broken down, those chemo molecules can exert a second-level “bystander effect” on new cells in the adjacent territory, where they could have additional damage caused to either healthy cells or tumor cells.So I was placed with this decision.And I made the decision for the more aggressive, potentially more effective option in Enhertu, which had many more unknowns.This bystander effect and the mechanism through which it is taken up by cells firstly makes it less advantageous to combine with water fasting, because the other chemos are mainly taken up by cells that are metabolically active.They are taken up through the growth pathways.So if you’re fasting, your healthy cells will be less receptive to those.Whereas with HER2, it’s less about how metabolically active a cell is to decide whether something will be taken up or not.However, you could have some protective effect by fasting still, as once those molecules are in the cell, they might be less likely to cause damage if a cell is in a protective fasting state.So I decided to go with that treatment and do a three-day fast instead.The Treatment ShiftNow we’re already going into the week starting with Monday, May 11th.What had occurred the week before that was that I had my last strength training session, and since then I haven’t been able to go back to the gym, which we’ll get to.On Sunday, May 3rd, I had my last strength training session. Already during that session, but especially the day after, I felt this strong sensation of tenseness and stiffness in deep muscle tissue around the thoracic spine.From Monday, May 4th onwards, that pain persisted.Within that week, it progressed quite quickly with other sensations that hindered me from being physically active.I started to feel pain and pressure around my ribcage, at the lower level of my ribcage, where the abdominals meet the ribcage. And I was starting to feel drained of energy, gradually more and more lacking energy.But I was still able to eat normally, so I kept eating.I wasn’t training anymore for the rest of that week, basically. I was less and less physically active.Then the next week came.On May 11th, I started fasting.There was also a plan here for me to be extra vigilant going into this new treatment. So it wasn’t only that I wasn’t able to train a lot during the week prior. Part of it was also planned for.But still, I was starting to feel very weak the week before.Then I had my last meal at lunch or breakfast on Monday, May 11th.I started fasting.I did not do an HBOT on Tuesday because I thought it would be too aggressive for this new treatment.Then on Wednesday, May 13th, I had this Enhertu infusion.And the Enhertu infusion took two hours. Then I went back home and started to feel the effects of the Enhertu treatment, which was low to medium-level nausea throughout the day, and no real appetite.But from day three onwards, I started to do minor refeeding anyway.I reckoned it wouldn’t impact either side, whether the treatment would be taken up or not.Also, by this point, I was feeling weak. So I actually gave myself the option to potentially fast up to five days, but I wasn’t feeling up to it because of the weakness I’d started to feel already the week prior.When I started fasting on Monday, May 11th, my body weight was clocked in in the morning at 89.5 kilograms.I looked in the logs. For two weeks prior, I’d been consistently walking around 90 kilograms. So that is kind of my goal weight for having recovered and gotten back to training. I was even up to 92 kilos at one point during that recovery cycle, I think.But what happened now was that I started to drop in weight because I wasn’t able to refeed myself fully.This persisted.A week into the Enhertu treatment, I still wasn’t able to refeed sufficiently enough.So I was gradually losing weight, losing even more energy here.HospitalizationIf we move already up to two weeks after the Enhertu infusion, we’re at the low point where I was feeling so bad that there was nothing else but to have someone put me in the hospital.And I tried to escalate this already earlier.We’d known about liver involvement already from the latest follow-up scan in beginning to mid-April.Even before that, in March, we knew about the increase in LD and AST, ALAT markers.But no one had really done any proper follow-up.I was given a date for biopsy which was like a month in advance, so the lead times to do anything were just ridiculous.But then now that I’d come to this f*****g end point, where I was feeling like there was no life force in me anymore, completely devoid of life force, I was just—This had been going on for almost two weeks already, that I had literally just been sitting down, hunched over in a fetal position all day, deep breathing to just get through the day.And then throughout the night, just fighting to get some increment of sleep through collapsing.Throughout this last month, I’ve only been able to sleep on the back because of the pressure from the ribcage.So sleep has been collapsing on my back, and then soon thereafter waking up from overheating, drenched in sweat, and trying to somehow reboot my system to be able to do it all over again for four or five rounds, if I’m lucky, accumulating like four to five hours of sleep effectively.We’re now at the 27th or 26th.So Wednesday 26th, I’m finally given a time to meet my oncologist.And when he sees me, he knows it’s real because I’m all yellow.My liver values have started to point heavily downwards, and now I’m all yellow as well, which means my bilirubin is through the roof.And my liver is basically not functioning.Thursday, I’m given a spot in the hospital.And I’ve been there ever since.So now we’re on June 3rd. Are we?Yeah, I’ve been here for a week.Life On The WardBeing put into a ward is a f*****g nightmare.I f*****g hate it.The ward bed messed up my back after two nights.Luckily, my brother sourced me a much harder mattress that I’m now laying on and living on in the corner of the room.It’s cold down here at floor level, but at least it’s somewhere where I can accumulate a few hours of sleep.For which I’ve had to start taking morphine since three days ago because of the pain and pressure around my chest area.Three nights ago, I took 15 milligrams.Luckily, yesterday night, I went down to 10.Today, I felt like I didn’t want to overdo it, so I just took 5 milligrams.Ideally, I should take in the second one, but now I’m not even allowed.I could take one now to get a few more hours of sleep, or maybe one more hour max between five and eight, or six and eight.But I’m currently supposed to not take in any liquids whatsoever since midnight yesterday, because this morning at 10:40, I think, they’ll be taking medium-sized biopsies of my liver to try and get closer to an answer here.Because we don’t have an answer.The Liver QuestionWhat they initially did was a new CT on my liver, which was done on Thursday already.There they found an obstruction in the main vein of the liver outlet, the vena porta, the portal vein, which is the biggest vein going through the liver.But then they said now, post hoc, when they looked at the last PET/CT follow-up scan FROM April, that they see that thrombosis there already.So they saw a blood clot there, and they claimed that they see the same blood clot already in mid-April in the scan.So that’s probably not the whole story, even though it can be a contributing factor.And they don’t want to treat that thrombosis too aggressively, so they put me on anticoagulants.I’m now daily taking a dose of Fragmin to anticoagulate my blood.Lovely.With hopes that, over time, that will gradually decrease the blood clotting.Because of thrombosis being in that big vein, and veins being much more sensitive as vessels, the risk of bleeding would be too high from doing a thrombectomy to remove the entire thrombosis, the entire blood clot.So they claim the blood clot is not the main culprit here.But I think it can definitely be a contributing factor, right?Especially if it’s been there since mid-April. Couldn’t it have gradually worsened the environmental conditions in the liver, to have a lot of downstream effects?Then they keep looking at the liver through the scan, and they claim they don’t see any clear—And this was actually today. Only today they came back, after having a second CT follow-up yesterday.They came back with that they still can’t see any clear areas where the biliary ducts are obstructed.So they don’t see, on a macro level, a clear enough area where they suspect obstruction, which, if they’d identified it, could have been something that you could potentially alleviate and treat by putting in a stent or doing some manual drainage in that area.They cannot identify such an area.So what remains the main theory now is that, because the main problem with my liver health right now in terms of short-term survival is drainage, my liver is able to synthesize molecules at a good enough level, but it’s not able to drain effectively all of the byproducts and the products from the liver.So instead of them going into the bile, they go into the blood.Bilirubin is rising.My bilirubin is now up to 200, 190.Heavily jaundiced.And this affects my overall health state very heavily.If it keeps going up at the same speed as now, my bilirubin will be around 400 in two weeks from now, which is very critical.The challenge is what they’re going to do now with the biopsy.The analysis they’re going to put that through has a lead time of one to two weeks.So I don’t know where I’ll be health-wise when that analysis comes back.It’s a big question mark.But what they’re trying to look at now is whether this drainage issue can be found on a micro level.Whether it’s inflammation or tumor activity or both that’s causing this drainage issue on a micro level in these micro ducts, the biliary micro ducts.And that will not be identified until they take these biopsies and test for a lot of stuff.So I’m a bit annoyed with how this process has been so slow moving, given the criticality.My tumor burden is large enough as it is.I’m going through very aggressive treatment that I need to be able to bear with and repeat with such a steady pace.This process could definitely have been escalated earlier from the hospital system, and then I wouldn’t be in as critical a state health-wise as I currently am.Food, Weight, And The Full-Time Job Of Passing StoolThere is no way for me to repair my system right now in an effective manner.I’m not even able to hold down food effectively or push food through my system.Another challenge now has been that, gradually, it’s been harder and harder to pass through, to get food through my system.Instinctively, it’s meant that I’ve had to eat much less.And I’ve had to eat much less ketogenic as well, because without the liver functioning, you don’t produce the bile, you don’t have the correct movements in the bowel to be able to break down and process those fat-heavy foods.So I’ve had to start to stray away from my diet as well.But that’s only helped somewhat.I basically made it my full-time job to sit on the toilet trying to pass stool.Literally.I sit there for hours on end.And in the last two or three days, I’ve started to make use of medicaments to help me as well.I’ve taken Movicol four times a day, which is supposed to help by binding fluids and having those fluids more bound into the stool.Then yesterday I did my first enema, because I hadn’t passed stool for two days.That was successful.Then yesterday night I took 10 drops of Laxoberal, which is supposed to help with the peristaltic movement in the motility of the gut.Another downside there is because I started taking morphine.Morphine has a constipative effect, so it ups the ante in terms of being able to pass stool.My weight has been dropping continuously.Until two days ago, it dropped all the way down to 81.4.But then two days ago, I weighed in at 81.8.Yesterday, 81.8 again.We’ll see what my body weight is today. It’s probably a bit lower because I’ve been able to pass stool now, so I’ve lost a lot of fluids.Matter of fact, we could actually have me weigh in right as we speak.Just bear with me.Okay, so I’m weighing in now.81.5.So, 81.5.Sorry, I had to get my shirt back.81.5, so basically the same.I was able to have a full-size meal, at least full-size in terms of the hospital meal sizes, which are probably half of my normal meal size, to be honest.Oh yeah, coughing has also been a new phenomenon since starting Enhertu treatment, actually.So it might be an initial indication already that Enhertu is affecting my lungs, because that’s a known adverse effect of the treatment: interstitial lung damage.Another lovely topic maybe to be had later.As you reckon, I was standing up just to use the scale, but that was a big exertion from my side.Just really trying to catch my breath.Why I’m Recording ThisSo where are we at?Where are we at, team?Well, it’s six. We’ve been talking for a while. I’ve been talking for a while.Soliloquy. Monologue. Solipsism.What I’ve been trying to get to with this reflection is firstly to relay what’s happening to me health-wise, because I do care about any of you listening and I want you to know about this health journey of mine.It’s more or less a substitute to us being able to hang out in real life, because I don’t have the life force and the bandwidth to do that with basically anyone nowadays.Even less my partner, who sometimes just has to bear with our existence, some days just focusing on supplying me with some bare essentials, which I’m so appreciative of.But it’s not an ideal way for any relationship to work.So I want to tell you guys about what’s happening right now, as I’ve been radio silent for the last month or so.I haven’t had the energy to do this until now. Suddenly, I felt I had the urge to do this recording.But yeah, my energy levels are non-existent.You might sense that I have this energy now that I’m ranting, but it’s mainly just adrenaline speaking.I find myself having to take long pauses as well.And after stopping this recording, it’s not like I’m going to start publishing it straight away, because I’ll have no more energy for the rest of the day.The Twisted AdaptabilityThe starting note I had was about how wicked the system of our body is.How crazily adaptable it is.It’s both beautiful and ugly.It makes us able to endure and withstand harsh circumstances and adapt to those.But that can also turn us into a brute.It can also turn us into a blind warrior.And you never know where the balance is.At many points in my life, I think I’ve overshot that balance.I’ve been too much of the one grinding my teeth, just keeping calm and carrying on.But in this sort of circumstance, obviously, it’s helping me.As I’m very much in here and now, I’m trying to focus on any bit of action I can take to be able to once again pass stool, or to be able to get one more hour of sleep, or to not have the nurses wake me up in the middle of the night to take blood samples, as they came and stated to me that they had to do around midnight yesterday.Which they didn’t have to do.They were just wanting to follow protocol…But life is a struggle, and I’m f*****g sick of not seeing any upsides here.It’s been over a month where I have no—It’s been a month where I haven’t really felt any clear upward turn in anything.It’s just been a downward spiral.And that’s very taxing mentally, but foremost physically.For me, it’s very taxing that you never get these visceral sensations of: now I’m recovering, now something is up, now there’s some life force tingling in me.And you just have to make do.But it’s hard to make do in these situations.I’m just hoping that there can be some upward trend soon, sooner rather than later.But we never know in life, right?If we cannot find a resolution to this liver issue, if it is in fact tumor activity triggering all of this, and the tumor activity is so widespread but diffuse inside the liver, I could maybe try and get to it with steroids to ease that inflammation.But what then?Then I need to retreat that tumor.Which would probably trigger another inflammation.So is that at all sustainable?We might be at way’s end.End of the road.As Boyz II Men so beautifully put it.But we’re not there yet.One day at a time.I’ll monitor everything.I’ll monitor the s**t out of everything, as I always do.Unbroken streak of morning scale measuring for the last two years.I mean, I’ve missed a day or two here and there.But I know my weight.I know what I put in my system.I have a big log of my symptoms.I’ve gathered so much tacit knowledge throughout these two years about my body and how it works.I have good support from my partner, my brother, and a lot of other people around me.Good emotional support.Emotional stability within myself.Psychological stability.These bodily systems are somewhat shutting down on me, but they haven’t turned on the off switch yet.There are still support systems functioning.So let’s not kill the mood by supposing anything beforehand.And yeah, we make use of that adaptability.That twisted ability that can turn anything into a new normal.Anything into a Groundhog Day.ClosingAnd I’m hoping you guys are having better situations in life right now, where you don’t have to adapt as brutally to your circumstances.Maybe you can even sway some of those circumstances in your favor, in a way to lead a more life-affirming and creative life.So be mindful of your life force, fam.Namaste. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit victorsalander.substack.com